November 3, 2010. The other night we spoke about the mid-term elections over dinner and Peter asked whether I voted for Daddy. Rather than embark on yet another Who’s on First dialogue, Pat instead asked, “Peter, why do grownups vote in elections?” “To vote,” he replied. At age 9, our son still has little understanding of the world beyond himself, despite his exposure to media, family discussions, and school lessons. Given how “normally” he presents, it’s an increasingly worrisome reality. The other day he asked if the Civil War was at our house, casually commenting that our yard was peaceful and he liked it that way. When asked, he couldn’t recall where he had heard about the Civil War, all he could say was, “it’s real Mom, the mens are fighting.” I tried to explain that it took place 150 years ago, that I had relatives who fought for the South and that the war almost destroyed our fledgling country. He then asked if my father, who died in 1994, was still fighting, and was that why he doesn’t visit often. No matter what I said, he couldn’t grasp the idea of a distant past, not even slightly. There are times when he can envision a future – he’ll make comments about buying his own iPod or car when he grows up, but he has no real inkling that life occurred before the scope of his own memory. This restricted style of thinking is one of the countless reasons I agonize over Peter’s ability, one day, to navigate independently his environment: to recognize the difference between friend and predator, to make the correct snap judgment in a dangerous situation, or even to remember to eat dinner if there is no one present to model the task. At our first CSE meeting with the new school the other day, his teacher astutely commented that Peter has difficulty orienting himself in time, which by his age, in particular, can be a major source of confusion and frustration. She said addressing this difficulty should be a top priority. Pat and I agreed, of course. How refreshing that this new teacher is concerned with the same things that worry us. She realizes that Peter needs to master the fundamentals, like where he is in time, both in the larger context and in terms of daily living, before he’s exposed, uselessly, to grade level lessons such as the scientific principles of electricity, a unit he was made to endure for weeks on end last year. Maybe, just maybe, we’re now on the path toward real improvement, cooperation, and better spirit. I do hope so. Last month Peter announced he wasn’t going Trick or Treating this year. The decorations that adorned the village neighborhoods scared him, as did many of the costumes. I suggested he pick out a costume anyway, which he did, just in case he changed his mind, which he also did. And I’m so glad. We met up with friends and had a wonderful time, Peter included. I think the kids enjoyed jumping in the countless mounds of raked leaves best of all, especially Sophie, who made a terrific mummy. I only hope the villagers forgive the mischief as they inevitably embark on raking their yards all over again. Dare I say it? Things are starting almost to feel normal. Not normal “normal”, but more relaxed, more supportive, less combative and definitely more hopeful. I ran into a friend the other day – she later emailed to say how wonderful she thought I looked, which I found funny because I was wearing sweats and a t-shirt and I’m fairly sure I had pieces of mulch stuck in my hair. But what she meant was the stress – she said for the first time in months, stress no longer seemed to be my most prominent feature. What a nice compliment, and reminder, of what matters, what I must strive for, and what I must never forget to gauge. The difficulties of raising two children with complex, often misunderstood needs are plenty, but at the same time, the daily joys, the occasional soaring triumphs, the quiet moments – these are the things worth carrying.
November 3, 2010
Tags: adoption, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, international adoption, post-institutional autism, red hook central school district
September 13, 2010
Tags: adoption, autism, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, orphan, post-institutional autism, post-institutionalized, red hook central school district
September 13, 2010. These last few nights have been wide-open window nights, a sure sign that autumn lurks around the corner. I lay awake, unable to sleep, my thoughts racing in seeming synchronicity to the breeze that tickles my hair as it gently spirals through the room from the window over our bed, an uninvited but welcome companion. Rest eludes me, this time, because the head of special education is saber rattling, and in a not so subtle way. Because we don’t expect a ruling on our due process hearing before September 30, our son’s psychiatrist, who is well known and respected in the community, wrote a letter to the district requesting homebound services until the hearing process was resolved. She agreed to this course of action, in part, based upon Dr. Federici’s recommendation. Under New York education law, the district is required to provide such services upon written request of a child’s physician. But the head of special education is balking, trying to scare us with poorly disguised threats and vague, sinister language that conjures up images of truant officers and Child Protection Services. He’s gone so far as to say that the fact that we are in the D.C. area today and tomorrow does not constitute “legal excuse for [our] children’s absence”. The fact that he’s targeted both kids with this pronouncement, and not just Peter, isn’t lost upon us. Even our son’s hospital stay, scheduled for next week, remains legally unexcused, whatever that means, in the official eyes of the school district. Peter’s recovered substantially from the disaster of last year, physically, emotionally and psychologically, and we have no intention of compromising his health and welfare by putting him in harm’s way again. The double whammy of psychological abuse delivered at the hands of “educators” intent on turning him against us, coupled with the emotional damage and physical stress of having to sit through day after day of a curriculum that for Peter might as well have been delivered in Swahili, caused his brain literally to deteriorate. Now that we know what really occurred last year, its no wonder he came home raging every day and began suffering from visual and auditory hallucination. Peter’s mind is fragile yet as these past few months have proven, its also incredibly resilient. Our son is healing, he’s coming back to us, and until this sordid affair is settled, home is not only where the heart is, its where safety resides as well. So if the school thinks a nasty-gram or two can scare us into submission, they’re sorely mistaken. Our child’s life is at stake. Safeguarding who Peter’s able to become – his soul, his happiness, his very potential, is our sacred obligation. It’s an obligation from which we’ll not run and for which intimidation tactics are destined to fail. I take a phone call during a break today from a new friend who lives in Minnesota. She too is an adoptive mother of Russian born children and knows a thing or two about loss, love and primal struggle. We have so much in common, it seems, but mostly we share an eerily similar tale of family dynamics. We’re able to speak for 20 minutes about a number of issues and the very sound of her voice releases some of the festering tension within me. We talk about how the Peter’s of the world, and their parents, have no organized voice, certainly no lobby power, and therefore little means to convince the decision-makers in their children’s lives – be they social workers, educators, physicians, mental health providers or clergy, of the extent of impairment. Because there are no established or widely accepted treatment protocols for post-institutionalized, alcohol-exposed children, those in a position to render decisions affecting our children’s future tend to take one of three courses. They treat our kids like throwaways, the most catastrophic approach, they apply a one-size-fits-all mentality, which is dangerously simplistic, or they borrow from other models like those developed for autism. Using autism protocols to treat our kids, however, especially those with normal or above-average IQs, makes about as much sense as forcing a husky-sized child into slim-fitting jeans. Such a decision only makes sense in the absence of other options. As my friend and I hastily say our goodbyes, I hang the phone up thinking about this predicament, how our lack of voice as a community, and our society’s lukewarm interest in our children’s welfare, is largely responsible for the grief and trouble our families have endured. I want to break this cycle of tragedy, suspicion and misunderstanding, both in ways large and small. I want to help find a way to form a voice, a united voice, that advocates not only for our children but for parents scattered across the country, well-meaning people who either suffer in silence or bear the unmistakable brand of righteous battles fought and lost. There’s something terribly wrong when its not safe for a 9 year old boy to attend school, when lines in the sand are drawn not only from ignorance and indifference but because there’s no clear solution – no path toward recovery, that ordinary, every day people can follow. I know a little about how those “refrigerator mothers” of the 50s and 60s must have felt as they tried to raise their autistic children in the midst of constant misunderstanding, accusation and lack of science. Fifty years later I’m still outraged on their behalf. They were unwilling pioneers (and victims) in a field not yet born. I wonder if 50 years from now the plight of mothers raising post-institutionalized, alcohol-exposed children will have gone through a similar renaissance. Better yet, maybe us modern “refrigerator parents” can band together with courage and unity of purpose to eradicate the problem, along with the accompanying stigma, once and for all in our lifetimes. Now wouldn’t that be something?
September 6, 2010
Tags: adoption, alanna ramirez, autism, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, orphan, post-institutional autism, post-institutionalized, red hook central school district, Trident Media Group
September 6, 2010. I haven’t been completely honest with myself, writing recently about all the beautiful moments with Peter. The truth, the whole truth, is that there have been a number of alarming incidents sprinkled among our more encouraging moments, moments I cling to as evidence that there’s real hope for Peter’s future. I suppose I’m both reluctant and afraid to consider how these disturbances lessen the benefit of the positive experiences to which I so greedily cling. Peter is complicated, his moods and reactions sometimes vacillating on the turn of a dime. On the way to the Jersey Shore, for instance, he lay down on the seat and began kicking the rear window with all his considerable, adrenalin-laced might. The reason? Sophie wouldn’t share one of her DS games. I had to pull the car over on the middle of the interstate to wrestle him back to stability. We all could have been killed. With little room and a steep drop on the shoulder, even a slight sideswipe would have sent us tumbling down the ravine. But I had no choice. Peter had turned violent and could have punched out the window, opened the car door, or even worse, turned his temporary but psychotic attention to Sophie. There have been at least three other incidents more or less like this in the last few weeks. They are part and parcel of what living with and loving Peter entails on a daily basis. There are times when our son is his own worst enemy and requires someone else, usually me, to pull him from his dangerously disorganized cogitations. What this holds for his future, I don’t know. His tendency to disassociate, to so easily break with reality and escape into what can only be described as psychotic thought, scares the hell out of me. When these episodes are through, and thanks to lithium they’re much shorter in duration than they used to be, he’s always remorseful, sometimes even reflective. But the remorse doesn’t translate, at least not yet, into ability to prevent or abort the next episode, and that’s the real tragedy. Peter doesn’t, and possibly may never, learn from his mistakes, a crucial, fundamental ability the rest of us take for granted but one that is always, it seems, just beyond his reach. Saturday we went to Mudge Pond, one of our favorite watering holes, to fish, picnic, swim and enjoy the day. Autumn arrives early in this part of the country, often in spits and spurts, and so even though the temperature was in the 90s most of last week, yesterday the high struggled to reach 70. Considerable wind and low clouds rolling across the horizon further conspired to strip us of one of our official last days of summer, but we didn’t mind. With fresh prosciutto and rolls packed for picnicking, and the kids busy with catching minnows and frogs, we had the park mostly to ourselves, relishing the brief snatches of sunshine as they appeared. Two parallel floating docks jut into the lake and form the sides of the designated swimming area. For a while, I teetered on one of them, intent on catching a fish for the kids despite not knowing what I was doing and feeling like the wind was about to launch me into the choppy water. At one point, a youngish man in khakis and a blue shirt walked out on the dock directly across from me and made a call from his cell phone. I didn’t think much of it but as we packed up to leave, Pat’s mother pointed to a pile of clothes on a bench. Earlier, she had watched the man in khakis strip to his bathing suit and dive into the lake. Apparently, he hadn’t come back, and by then we were the only people foolhardy enough not to leave because of what had become questionable weather. His clothes neatly draped across the bench, we puzzled over what to do, searching the expanse of empty lake for signs of human activity. Pat tromped to the parking lot and reported that one other car besides ours was still there, with a rear-facing car seat in the back. I checked the clothes at one point for a wallet, I’m not sure why, but there was nothing but a few dollars and his cellphone, which we dared not use. Eventually another woman in Levi’s appeared next to me as I continued to scan the lake and companionably asked whether there were many swimmers today. “Not many,” I replied. “But there’s still one out there.” After telling what we knew, she explained that she often swims across the lake and back, and that it can take half an hour in good weather and considerably longer under rough conditions. “I wouldn’t chance it today, though,” she added, concern rising in her voice. “I’m going to run home and get my kayak and look for him. Give me 15 minutes.” Her presence and knowledge both relieved and worried us. It was possible our mystery man could still be exercising but here was an experienced lake swimmer telling us she wouldn’t risk it in that kind of weather. Was he merely taking a foolish chance or had he drowned? We didn’t know. With Grandma wrapped in a few beach towels for warmth, we huddled near the picnic tables waiting for the woman with the kayak to return. She was gone longer than 15 minutes, which turned out to be a blessing. “I see him!” Pat shouted excitedly. “He’s coming in.” And sure enough, he was. I could just make out his bobbing form a hundred yards or so from the shoreline. I’m not sure why, but I met him on the dock with his towel like a scolding mother, and told him in a cheerful voice that he had given the LoBrutto family and another woman in Levi’s a real scare! Luckily, he was a jovial guy and we all had a good laugh about the experience, though the woman with the kayak was not pleased when she eventually returned. “I guess I shouldn’t have done that,” he said, an impish smile crossing his face as he toweled off in the quickly chilling air. “Well, at least it’ll make a funny story to tell your wife,” I offered. “I, uhm, think maybe I better keep this one to myself,” he replied. “She might not think it’s so funny!” We all said our goodbyes and he volunteered that he would never again take off, alone, across a lake in bad weather. It was an afternoon destined to become part of our family’s lore, especially because there was such a benign resolution. Driving home that evening, my thoughts, as usual, drifted back toward Peter. Our mysteriously missing swimmer, a young father with a cell phone and a few dollars in his pockets, did something a little foolish and caused a few well-meaning strangers, us, a bit of anxiety in the process. My bet is that he, whom Pat and I have dubbed “the almost dead guy”, won’t do it again. He’s learned from the experience and will adjust his future decision-making accordingly. What grips me with sudden, unyielding anxiety, whether in bed, driving the car, or working in the garden, is the realization that the wiring in our brains that allows us to make such adjustments, to learn from our mistakes, is either missing or irreparably damaged in Peter. Our son’s brain lacks the protective checks and balances so necessary to survival. He’s destined to live, thanks to his birth mother, in a permanent state of intoxication. If compelled to do so, by desire, impulse or stubborn drive, he would swim across that lake and back, no matter what the danger, again and again, until one day he finally vanished, for good.
August 31, 2010
Tags: adoption, alanna ramirez, attachment, autism, biro, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, orphan, post-institutional autism, post-institutionalized, red hook central school district, Trident Media Group
August 31, 2010. Peter keeps asking about school supplies and I keep telling him that I don’t know what he needs yet, a half-truth or white lie, depending on viewpoint. Today he’s going to a water park with the son of one of my close friends, a slight, quiet boy with a sharp mind and sensitive soul. Sophie and I are spending a girls-only day with the boy’s sister. We have a few errands to run, but we’re also planning lunch and an outing to the movies. The forecast high is a blistering 94 degrees, a temperature I abhor unless I’m in close proximity to a cool and inviting body of water. Sophie’s a little tired of the town pool, however, and since her friend is nursing a sore knee, we decide to plan the day around indoor activities. As we execute the kid switcheroo this morning, reminding my friend as we say goodbye to take Peter for frequent bathroom breaks, I’m struck with the dichotomy that at times exists within our son. At the county fair on Friday night, we ran into a boy whom Peter played with during recess in his summer school program. This child is 11, and as his dad later shared with us, he’s mildly retarded. When the boys’ eyes met, they ran into each other’s arms with beautiful surrender, as well as a complete lack of social awareness. Although Peter is higher-functioning than his new friend, he shows no awareness of the boy’s disabilities. “He’s my best friend, Mom!” Peter proclaims, jumping up and down in time to his buddy’s constant, agitated motion. The father looks relieved to have someone with whom to tag along. There’s a great sadness about this man, I sense it immediately, and Pat and I fall into easy conversation with him as we scurry to keep pace with the children. He’s eager to tell his story, the story of his son, a phenomenon I’ve encountered frequently on both sides of the special needs aisle. On the few occasions where I’ve had the opportunity to meet other parents in even remotely similar situations, I sing like a canary. Parenting a special needs child, regardless of the type of disability, is an undeniably lonely, isolating experience. When there’s a chance to make a connection, when there’s an opportunity to relate, to understand and be understood, we grab it. And so I listen, intently, and without interjecting too much of our own story, in order to give this heart-broken man a chance to be heard. He doesn’t mince words or sugar coat the obvious as he knows instinctively that he can speak frankly with us. Pat and I, just like he and his wife, are lifetime members of a club for which we never sought membership. His son is delightful in that overgrown puppy way, a fact I can appreciate and enjoy completely only because I don’t have the responsibility for his future. We exchange contact information when we leave and promise to stay in touch. Peter and his friend hug goodbye and the father tells us as we’re leaving, with a hint of incredulity, that his son has never had a play date, much less a friend, before. I email the father photos of the boys the next day and by the following morning the phone rings. Because Peter’s new friend can’t stop talking about him, his mother calls the next day and asks whether they can stop over. I’m thrilled, of course, that the boys have another chance to play over the weekend and when its time to say goodbye, Peter waves frenetically, a grin as wide as I’ve ever seen, as his friend and mother drive away. I sling my arm across his shoulder to let him know I’m proud of the way he behaved. Perhaps, rather than a dichotomy, Peter’s more like a bridge between two worlds – one typical and the other not. There are strong arguments against assigning him to either environment, especially when it means to the exclusion of the other. He’s comfortable and happy around children like his mildly retarded friend, its where he fits in and feels both calm and competent, but at the same time, he needs the social and physical challenge that more typical kids offer. But regardless of the challenge, Peter’s learning to teeter between two worlds with grace and ever-increasing aplomb; he’s compassionate and sensitive with his less functional peers and when ridiculed or left behind by the regular set, he’s cultivating a sense of stoicism and self-acceptance that at times belies his age and disabilities. As I finish up tonight, I gaze happily at our son, who’s sprawled across the sofa watching Scooby Doo with Sophie, exhausted but content after a very hot day at the water park. Sometimes I’m so preoccupied by what Peter needs to learn, understand, and appreciate that I overlook the valuable lessons that his example often offers. Our son, at times, is a veritable ambassador of good-will and acceptance. Wholly nonjudgmental about the various gifts people have, or sometimes lack, he instead finds value, at least some value, in all those whose paths intersect his own. Thank you, Peter, for showing me the remarkable, and beautiful, benefit of your philosophy.
August 30, 2010
Tags: adoption, attachment, autism, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized, red hook central school district
August 28, 2010. Last week the kids and I, and Lindy, drove to the Jersey shore for a few hastily arranged days of fun and sun at the beach. We stayed in a cruddy hotel with a wonderfully open-hearted receptionist who made the entire experience tolerable. Despite some uncooperative weather, the four of us had a great time. I only wish Pat had come along. The days consumed by our Due Process Hearing, however, have robbed him of time for even a brief summer break. It seems the two of us are destined forever to waltz in orbit around the demands of raising our developmentally disabled, emotionally scarred son. Sophie carries her own baggage, at times a heavy, trouble load with which we’re desperate to help her lighten. Like gravity’s effect upon the moon, our children’s pasts continue to dictate the future course of our lives, to the point where it sometimes seem we have no ability to choose our own path or change course. Missed summer vacations pale in comparison to the situation hanging over our heads regarding Peter’s impending school placement. With only 9 more days to go, we still have no decision regarding where our son will be permitted to attend school. I used our 60 hours at the shore to wash away the insult caused by having to endure, day in and day out, school district “professionals” perjuring themselves in an effort to best the LoBruttos, and of course in the process, poor Peter. Luckily, it worked. Unsuccessful but comic attempts at fishing, along with boogie boarding, shell seeking, over-priced carnival rides, and mediocre seafood, all conspired to strip me of my worries. Our only full day at the beach was cloudy, but it didn’t matter. Sophie regaled us with her crab-walking antics across the sand as Peter dug endless holes with a well-used yellow shovel. The next day was beautiful, the waves particularly impressive due to the front that had passed. We allowed ourselves, with varying degrees, to be bounced and tossed in the surf. Lindy holding tight to Sophie and me to Peter, we’d stick it out until our laughter became choked with seawater, then we’d scramble to the beach, covered in bits of sand and shell, to catch our breath and rest. “I’m not going in there again,” Sophie would pant. But within a minute we’d hear, “Come on guys, let’s do it again!” We left happy and tired and arrived home, 3 hours later, to Pat’s smiling face and the beautifully affirming knowledge that we were missed. I don’t know why Peter and Sophie were given to us, I’m not prepared to say it was God’s will, or even destiny, but the challenge, and the privilege, is ours. Even a few days away had me missing my husband and partner more than perhaps he knows. I can think of at least a dozen or more people whose temperaments are better suited for daily life with our rambunctious duo, but I know in my heart and mind that the two of us have given ourselves entirely to improving their fates. As we close in on six years as a family, I sometimes worry that we’re still reaching for that elusive equilibrium, that place where hard work, dedication, and old-fashioned courage keep a family united, turning to each other for both contentment and companionship. But we’re getting close. It’s time I let my guard down in this respect. Our progress as a family, and as individuals, is real and measurable. I sensed it the minute we walked in the door and Sophie launched into a blow-by-blow description, for Daddy’s benefit, of our adventures. I also sensed it looking around the kitchen and living room, which were neat as a pin, a welcome home present from Pat. But mostly I sensed it in my heart, where I felt full with the knowledge that the four of us are bound together not just by the decisions of our pasts but by the hopes and prospects of our futures. Our children’s needs may indeed dictate the general direction of our family’s future, as is the case in all families, but they need not demand the course. Our job, as parents and partners, is to appreciate and embrace the difference.
August 17, 2010
Tags: adoption, alanna ramirez, attachment, autism, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized, red hook central school district, Trident Media Group
August 17, 2010. Today is Peter’s second day of art camp at a wonderful space housed in an old chocolate factory called Imagination Station. Yesterday he was very excited, though nervous, to begin this new adventure but he became verbally assaultive as soon as Sophie and I walked in the room to pick him up. “The juice is rotten!” he hisses. “I had nothing to drink at snack.” I know what he’s talking about because we’ve gone through this before. The design of his favorite juice box changed a few months back and its new persona is something with which he just can’t cope. Really, I understand. Peter struggles through so many changes – they’re all so difficult for him and yet some are so miniscule they’re nearly invisible to the rest of us. If he has to put his foot down about a manufacturer’s audacity to change its packaging without first consulting him, if that’s where he decides to draw the line, then I want to be sympathetic. But at the same time, I don’t want his obstinacy, his perseverative tendencies, to overtake all reason. In truth, I also don’t want to throw away a perfectly good case of his favorite juice – a flavor Sophie won’t even touch – because he’s dug his heels in over something nonsensical. “Let’s read the expiration date together,” I begin, pointing to the stamped “use by” date that clearly says May 2011. “No, it’s rotten – you want to poison me, you bad mother person!” I desperately want to avoid a meltdown in this sanctuary dedicated to creative exploration, so I steer him out and mumble something over my shoulder to the woman who runs the program. Once outside, away from the other children, he regains some semblance of composure and we head toward home. Over lunch the underlying cause for the assault reveals itself: Peter had first day jitters and it seems some of the “older kids” (all of whom are younger than he) were staring and making fun, among other things, of the way he speaks. Teasing is a cruel reality when it comes to a child like Peter, and constant vigilance is required to combat it. “I cried in my head, Mom, but not on my face.” He can be so brave, our young son. He wanted to cry – he felt like crying, but he held it in. How many times has this happened without our knowledge? Of the handful of episodes about which I know, there are bound to be dozens more, little acts of unkindness, left unacknowledged and unrevealed, in the clandestine recesses of Peter’s fragile psyche. After lunch I speak with the art instructor, who listens carefully and promises to help ensure tomorrow’s a better Peter day. Sleep doesn’t lessen his anxiety, however. He spends breakfast laughing uncontrollably, without provocation, partially chewed biscuit crumbling from his mouth as Pat struggles to corral him. “You can’t go to art camp if you keep this up,” I interject. “I don’t want to go,” he laughs back. A staccato half-squeal, half-moan accompanies every physical movement. And this is where I trip up: I shouldn’t have brought up the possibility of not going unless I was ready to not send him. I need the break, I really do – its only three hours, and Peter needs the opportunity to work on his social skills, hopefully learning a little something about art in the process. Never mind the fact that we’ve already paid in full. Plus, I have work to do regarding our endless Due Process Hearing, and no matter what I start Peter doing – whether its riding his bike, playing with Legos, or practicing his soccer, the independent activity lasts no more than three minutes, then he’s back to circling me like a lost but plucky pup. “Peter,” I try reasoning. “You can do this. You love art. You just have to calm yourself down. Everybody gets nervous when they start something new.” But he keeps insisting that the other kids stare at him and make faces. He doesn’t know why, he says, but he insists they don’t like him. “Did you stare at anyone yesterday?” I ask. “No way, Mom. I didn’t. I swear!” And that’s when I know I’ve hooked him, the faintest hint of a smile betraying his plaintive voice. Peter and I spend countless hours working on his at times obsessive habit of staring at people – he can bore a hole right through a person’s skull, and so I know he’s just made a little joke on himself. “Okay, Mom,” he says, smiling shyly. “I’ll try.” When we arrive at camp, I walk him inside where the instructor asks Peter where he prefers to sit for table work. He chooses to sit with the younger group, some of whom are just four, and I nod my head in agreement. He’s more comfortable with this age child, and that’s okay. Yesterday he told me he preferred to sit with the younger kids, and together we agreed he’d make a wonderful “helper”. I linger near the exit for a moment, sensing his insecurity, but the instructor clearly wants me to leave, her body language signaling that its okay, that she’s in tune to the situation. I’m becoming more adept at recognizing early on whether a new adult in Peter’s life will help or hinder. This kind woman exudes helpfulness, and so without further hesitation, I say a quick goodbye and walk away. My hope is that when I pick Peter up three hours from now, he’ll be full of chatter about paper mache and drawing, and will have forgotten yesterday’s difficulties . . . maybe even to the point of forgiving the crime of changing the juice box design!
August 14, 2010
Tags: adoption, alanna ramirez, attachment, autism, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, orphan, post-institutional autism, post-institutionalized, red hook central school district, Trident Media Group
August 14, 2010. Peter’s difficult week continues. His entire person begins to undulate, vibrate, and gyrate, sometimes simultaneously, at the slightest correction or request. When he’s like this, his body language resembles more of a personality-disordered belly dancer high on crack than a 9-year old boy. Our hearing recessed earlier than expected yesterday, allowing me to pick up the kids from my friend’s house in time for Lindy and Peter to have their regularly scheduled session. That’s the good part. Routine is key to keeping our son in his happy zone. The bad news is that we now have one more day of hearing scheduled for next Thursday. When Lindy came up from the basement at the end of the day, she was shaking her head and laughing to herself. “He just can’t keep it together right now, Mar,” she says. “Whew! He’s feeling it, let me tell you.” What she means is he’s feeling the stress. The stress of the hearing, the unspoken worry that hangs over our summer like an angry storm, his recent birthday and upcoming party, and the transition with which he must cope now that summer school ended yesterday. A few seconds later he leaps up the stairs and catapults himself onto the couch, nearly knocking over a lamp, a low-pitched moan accompanying his every move. Lindy had plans to eat out with us – we were supposed to be celebrating the end of the hearing, so she reminds him that the two of them could stay home while Sophie, Pat and I go to the restaurant if he can’t pull himself together. Luckily, he recovers. Once he was calm enough, I pull him aside and ask him to think about why he’s had such a difficult week. This is something on which we’ve been working – his ability to recognize, at least to some extent, what triggers his behavioral breakdowns. He’s made incredible progress in this area, which makes me very pleased. “It’s my birthday coming up and school got over,” he offers meekly. I watch as his left leg wags to some interior rhythm. Though I’ve corrected the mistake a thousand times, he keeps calling his birthday party, which is tomorrow, his birthday. Peter knows he doesn’t enjoy a loud affair with lots of kids, so he decided to invite three friends for cake, a movie and then the local arcade. A boys afternoon out. But the anticipation is more than he can manage. “You’re upset that summer school’s over?” I ask. His lip trembles as he nods his head. “I miss Miss Katy forever.” And then a single tear hurdles down his face. He made a real connection with one of the teaching assistant’s in his summer TEACCH program (which is called PEACCE where we live). This is not a minor thing. Peter struggles with and resists intimate feelings just as vigorously as he avoids touch and noise. Strong emotions overload the unbalanced and carefully guarded way in which he allows the world to interact with him. The fact that someone he’s known for 6 short weeks has been able to wiggle her way into his heart is amazing and cause for celebration. So we talk a few minutes about why its okay to feel sad about leaving someone you care about but that because of their friendship, memories of him will always stay with Miss Katy and he will always have his memories of her. Maybe a little too conceptual for Peter, but he hangs on every word nonetheless. I can tell, though, that he’s still gearing up, I’m getting better and better at reading his signs, and so I wait for him to continue. “Okay Mom,” he says. “But I don’t want four grade! I want summer school. I get smart there,” he proclaims as tears begin flowing in earnest. “And I’m dry,” he whispers. Only my anger, and my deep commitment to not reveal it, at least openly, to our children, keeps my own eyes dry. Our son is smart enough to know that he’s found a place where he fits in, where he can learn at his own rate and experience the joy and satisfaction of completing his work himself, but its not within our control to send him there. “Everything is quiet, Mom, and the teachers don’t let me be wild. My body feels good. I’m good here!” he cries. And then I ask, “which school do you think is better for you to be at all the time, the summer school or your regular school?” His unequivocal answer is summer school, a program modeled after the TEACCH methodology that’s run by a public corporation formed by New York State to assist local school districts. Much of our town has puzzled over why the school won’t send Peter there year-round. I always assumed it was a budgeting issue but after yesterday, after hearing it from the horse’s mouth, I now know otherwise. Now I know the cost of sending Peter to this program year round is equivalent to the cost of maintaining him in an inclusion classroom. So what in the begonias is going on here? Are school districts now allowed to mete out revenge against parents that challenge their collective wisdom by withholding appropriate, cost-effective options to their disabled children? All I can say at this juncture is that I hope the injustice and heartache we’ve suffered, that the harm our child’s endured, is an aberration and not an epidemic. I can feel myself revving up. Although I’ve done a lousy job of protecting my family against this particular cancer, I’m fairly skilled at safeguarding the rights of others. Bullies should not be tolerated, whether encountered in childhood, family, career, or government. Peter’s going to a birthday party today for a boy whose looks he can’t recall, though he’s known him since first grade, because they haven’t seen each other since June. Pat and I use the rare opportunity of Peter’s all-day absence to spend some special one-to-one time with Sophie. We take her fishing at a nearby lake, where she gets the chance to try out her new pole, a birthday gift from my sister Patty. Unfortunately, because Pat and I have no idea what we’re doing, the equipment remains unchristened. We have a great time anyway, watching Sophie wrestle mammoth frogs on the shore as Pat and I continue in vain to snag something, no matter how miniscule, on the line. Later we stop by a favorite creek and let Sophie catch minnows with her net. We share little private jokes as Pat skips rocks and I take photos. Sophie keeps interrupting to ask what we’re laughing about and we playfully shush her away. The subtlest hints of fall are present, a slightly different quality in the air, a dusty darkness to the leaves, the way the water sits low and lazy, and we’re happy together, in nature and with each other. Those who wish our family ill, who try to test our commitment to our children, even our marriage, ultimately will fail. I believe this today. I’m reading a book right now entitled the Boy from Baby House 10. It’s about a disabled Russian orphan, Vanya, who now lives with his adoptive mother in Pennsylvania and will soon be heading to college. The Russian system of government, with their still Soviet-era concept of family and obligation, almost rubbed this boy off the planet by assigning him, at age 6, to permanent bed rest (i.e., cage) at an adult insane asylum. The orphanage and health authorities did this even though he had a lively mind and a reputation for charming anyone honest enough to notice with his wit, compassion, and intelligence. Decisions regarding this child’s life, the book reveals, often hinged on personal, even petty, alliances and hostilities. I can’t help but think of our situation as I finish this book, which is both horrifying and uplifting. We liberated Peter from Russia, where surely he’d have met a similar fate, only to have the fragile egos and trivial grudges of American public school officials dictate to our family whether and when he will be blessed with an opportunity to thrive. It took an army of people from diverse backgrounds and nationalities, and who were strangers to each other, to save the life of that disabled but vibrant youngster from Baby House 10. We thought the saving part of Peter’s odyssey ended on October 25, 2004, the day our children’s adoptions became final. But apparently, our son’s in need of an encore rescue. Who, in the end, will serve his cause? Who will be part of Peter’s army?
August 11, 2010
Tags: adoption, alanna ramirez, attachment, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, orphan, post-institutional autism, post-institutionalized, red hook central school district, Trident Media Group
August 11, 2010. There are only twenty-seven more days to go until the new school year begins and we have no idea where or even if our son will be attending. I’d like to say I’m the kind of person that can let the suspense fall off my shoulders, but our predicament is wearing me down as surely and inevitably as a rising sea erodes its shore. And like the sandy dunes, surrendering themselves in miniscule amounts over continuously vast expanses of time, I feel the pressure of our circumstances slowly, even sneakily, gnawing at the contours of my morality, my belief in the fundamental principles of right and wrong. Our last hearing date is this Friday, August 13. Peter was scheduled to spend up to five nights in the pediatric video EEG ward, starting yesterday, to reassess the status of his seizure disorder. Although the school dismisses our neuropsychologist’s latest concerns and report, Peter’s neurologist takes them quite seriously. To ensure his seizure medication isn’t masking a change in seizure pattern or brain function, his doctor intends to take him off his seizure medication and observe him for several days while he’s hooked up to the video EEG equipment. I admire Peter’s neurologist tremendously and trust him implicitly. He’s been with us every step of the way, repeatedly exhibiting an interest in Peter’s entire presentation and well-being, a rare quality, in my experience, among specialists. If he says Peter needs this again (he endured this process in the summer of 2006), then we’ll do it, despite the discomfort, expense, and inconvenience. A potential side benefit of the upcoming hospitalization is the possibility that the testing will indicate that Peter has outgrown his seizure disorder, allowing us to discontinue his powerful anti-convulsant drugs. But whichever turns out to be the case, we need to do this. Having said that, Pat and I decided to postpone the hospital stay late last week. The first reason is that I’m so depleted that I literally might have become postal if I had to face being trapped in a hospital room with an uncomfortable, bored child for up to 6 days right on the heels of the horrendous weeks of preparation, testimony, and acrimony that constitutes the LoBrutto family’s Due Process experience. The second is that none of the other hearing participants were willing to rearrange their schedules to accommodate an alternative date. Pat’s mother is having an out-patient procedure in Poughkeepsie that day, a procedure she already rescheduled once because of our hearing schedule. He cannot be in two places at once and there’s no way I’m leaving Peter alone all day in a hospital 45-minutes from home. It’s impossible to predict whether he’d have been discharged by the 13th. We just couldn’t take the chance. It was clear that I was obligated to be present for Friday’s hearing date whether Peter was discharged or not and though we tried, Pat and I could find no one able to spend the day with Peter in the hospital should the need arise. We’ve already relied on the kindness and compassion of friends one time too many to watch our children throughout the duration of this process. Once again I struggle to comprehend why the needs of our son always seem to take a back seat to the agendas of the local paid professionals, whether actual or aspirational. But in this instance, the predicament is my fault. I should not have agreed to make the date work. The decision was left up to me and I should have said no, I should have said we needed to find another date. But here’s the thing: as I try with all my energy to shield our kids from the seriousness of what’s taking place this summer, to hide my anxieties and give them the rich summer experiences they deserve (sans the actual summer vacation), I’m nearly paralyzed with fear over the coming decision. We have no options left. Every single private school within an hour’s drive of our home has turned Peter down. Catholic, Montessori, Christian, Waldorf, and Prep. No, no, and no. Private special education schools require our home district’s blessing, in the terms of a referral, before they’re even permitted by charter to contemplate our son’s suitability and acceptance. I cling to the possibility that justice prevails, for the sake of our son and future of our family, and that it prevails sooner than later. No decision can occur until the process is completed and the countdown to school, the place that is chipping away at our son’s IQ and functional skills with unforgiving determination, has begun. Peter’s not yet recovered from the sensory trauma of Sophie’s championship swim meet on Saturday. His recent behavior has thrown both Pat and I for a loop because he’s been so happy, calm, and connected recently that we’ve let our guard down. In fact, he’s been so stable all summer, thanks to the palliative effects of the PEACCE program, that I find myself daydreaming over the possibility that we might one day say goodbye, forever, to handling Peter like a crisis management team. Unrealistic, I know, but the point is that when his sensory and regulatory needs are being properly addressed in school, like they have been this summer, he’s able to manage his time at home much more capably, and amiably. There will always be swim meets and family parties and other events to throw Peter off-track. I understand that. What I desperately long for is a flip-flopping of the ratio, an opportunity to experience more happy days with our son, and as a family, than days spent cleaning up the mess the school generates inside our son’s brain as thoughtlessly as a serial litterbug. When this process exhausts itself, I hope with all my heart that the experience results in the reaffirmation of my beliefs in both the fundamental goodness of people and the opportunity for logic, reason and fairness to rise above institutional prerogative. What I guess I really need, to counter all the corrosiveness, is a beach restoration project for the soul.
August 9, 2010
Tags: adoption, alanna ramirez, attachment, autism, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, orphan, post-institutional autism, post-institutionalized, red hook central school district, Trident Media Group
August 9, 2010. Peter’s birthday began as usual, and as predicted, without the difficulties experienced in previous years. Sophie bounced into our room at 6:15 on the dot, rousing us into instant wakefulness despite having crawled into bed only a few hours earlier. Pat and I had brought the cake, candles, lighter, hat, glasses and candles upstairs when we dragged ourselves, exhausted, away from the kitchen table where the Due Process Hearing materials were piled in mounds of semi-organized chaos. For this forethought, I was extremely grateful. The “shushes” and “you’re being too louds” eventually woke Peter, who tip-toed down the hall to catch a peek. We immediately shooed him away and back into his bedroom. At approximately 6:18, the five of us (I’m including our dogs Pippin and Scout) entered Peter’s room to the tune of Happy Birthday to You. Our son’s new chapter as a 9-year old boy began with him sitting straight up in bed, clapping his hands with excitement, smiling ear to ear, and surrounded by the people (and some of the pets) who love him most. By 7:06 he was waving goodbye as he marched up the stairs of his school bus, cupcakes in tow and his backpack stuffed with new presents. We don’t normally allow Peter to bring toys or personal belongings to school because they don’t make it home, but we made a birthday exception for two reasons. First, he is in a small, highly structured program this summer for autistic children. Based on the TEACCH methodology, the system allows his brain to work more optimally, which means his thoughts are clearer and he has greater capacity for self-regulation. Because he’s thinking more clearly, he can handle more responsibility. Why our school district will send him to this specialized program in the summer and not year round is literally beyond my comprehension. The second reason we let him bring some presents to school that day had its genesis in guilt. Peter usually plays hooky on his birthday and we spend the day together as a family. But that wasn’t possible this year due to three straight days of hearing last week, the first of which commenced on his birthday. He spent his entire day at school and then afterwards, at my neighbor’s, who I’m sure gave him plenty of love and attention and general birthday cheer. The boy the school claims is afraid of his family wanted nothing more than to be together that night for dinner. He didn’t want to go out, not even for ice cream. All he wanted was a pancake dinner (Pat’s specialty) and time to play with and explore his birthday presents with Mom and Dad. How far we’ve come, in myriad ways large and small. Despite the victorious birthday, however, the hearing itself continues along its restive pace, blanketing our summer, our family’s very future, with a sense of foreboding that’s difficult to shake. Emotions at the hearing are running so high. It’s honestly hard for me to comprehend because Pat and I, and Peter and Sophie, are the only four people on the planet that have to live, for the rest of our lives, with the benefit or consequences of the outcome. By late Friday afternoon I was so spent and emotionally drained that I could barely operate the car to drive home. Though Saturday brought little relief in terms of physical recuperation, the day proved joyous and uplifting, a gift from the god of resilience. Rising before 6 am, we were on the road within a half hour for a marathon of a swim meet in Rhinebeck. Eight teams from the surrounding region, consisting of kids ranging in ages from 6 to 18, participated in this annual championship event involving a parade, costumes, body painting, raffles, and of course, lots of swimming. The day was uncharacteristically pleasant for August and spirits ran high. The little girls, including Sophie, whittled away the long periods of waiting by drawing on each other from head to toe with washable markers. At some point I joined in, drawing colorful mosaic designs on their backs as they threw their heads back in laughter whenever I hit a ticklish spot. Sophie swam her heart out, as did all the other kids, and when the Red Hook Sea Raiders were the declared champions 13 hours later, I cheered wildly alongside the other parents, Pat jabbing me playfully in the side the instant my jubilee turned a little weepy. As for Peter, he spent most of the day playing with the brother of one of Sophie’s teammates. These two boys have developed a friendship forged from the common boredom of having nothing to do while their sisters swam and I couldn’t be more delighted. With frequent checks, Peter made it through the day playing on the adjacent playground and basketball court. Although he didn’t manage to stay dry, he did manage the day, more or less, and for that I’m grateful and proud. It was a long, loud and rowdy event, not the usual type of venue to which we’d subject our sensitive son. However, as is typically the case, the four of us paid the price the next day. For some reason, Peter more often than not is able to hold himself together during an over-stimulating experience but then falls apart, often miserably, when the fanfare dies down. Yesterday was no exception. He tantrumed over using the bathroom, brushing his teeth, the way the couch felt and the sound our injured Jack Russell made as she wobbled pitifully about with her lampshade dragging across the wood floors. Pat and I tried are best to stay calm, and we did, but we also know from our many years of parenting our son that the behavior cannot be indulged. For this reason, I’m now trying to cultivate an air of firm compassion. Yesterday I wanted him to know I understood how difficult the swim meet was for him, just as I want him to learn to make the connection himself, but he also needs to clearly realize that his responses are not acceptable. When I kissed him goodnight, his demons finally satiated, he handed me a note that read, “Sory Momy. I love you.” Just like on Saturday when the championship team was announced, the tears of love, pride, and happiness flowed again, but this time, Pat wasn’t there to jab me. Though if he had been, I’m pretty sure he would have been crying too. Happy Birthday, beautiful boy.
August 1, 2010
Tags: adoption, attachment, autism, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized, red hook central school district
August 1, 2010. Friday began a blizzard of excitement, danger and exhaustion that continues to whirl around our lives for the third straight day. I testified at our Due Process Hearing from 10 to 4 on Friday, doing my best to convey as honestly but pointedly as possible the school district’s unacceptable conduct over the past 3 years and the ensuing, and tragic, impact its had on our son. Sophie’s theater debut was also Friday night, the culmination of a month-long camp. A friend picked her up because our hearing wasn’t over in time to get her to the theater by the appointed hour. When I called to wish her luck, she informed me that I didn’t need to tell her to “break a leg” because she had been stung in the underarm by a wasp an hour earlier and was therefore already injured. Poor baby! Pat and I raced home from the hearing to pick up Grandma, Peter, and Lindy. We grabbed a quick bite and then drove the 7 miles to Rhinebeck a good 90 minutes before show time because we had to wade our way through the mob of paparazzi and gawkers trying to catch a glimpse of the famous. Yes, it’s true. Our little neck of the woods has been taken over by the likes of Oprah, Ted Danson, Madeleine Albright and the former first family. Chelsea Clinton married yesterday, and many of the guests, including dignataries, are staying in what’s touted as the oldest inn in America, which happens to be directly across the street from the theater where Sophie made her grand debut! During the lunch break on Friday, our hearing officer drove to Rhinebeck to drink in the scene and returned with a photo of Bill Clinton on his cellphone. Apparently the former President exited his motorcade directly in front of him. What a crazy day. Streets were closed, parking was a challenge, vendors were selling t-shirts that said “The Wedding” (no kidding), and police officers congregated at every possible turn. Nonetheless, the show managed to open without a hitch, more or less. I was so nervous for Sophie, who had lots of little parts, ranging from a thief, a dressmaker, a bird, to a sack of straw, that my heart caught in my throat every time she walked onstage. But the show was wonderful in the way that any production involving 22 kids and a gifted director-teacher is bound to be: colorful, exciting, hilarious, creative, and inspired. Sophie jumped into my arms with exuberance afterwards and melted all the difficulties of the day away. Peter behaved beautifully the entire time, which was icing on an already scrumptious cake. Despite her exhaustion, Sophie insisted on getting up bright and early for her swim meet yesterday morning, which Pat and I had been on the fence about because the second performance was last night and the final matinee is this afternoon. But the day was one of those gloriously rare mid-summer gifts where the humidity disappears, the temperature drops, and the sky is a brilliant blue, without a hint of the heat-induced haze that so often shrouds the horizon, and so I didn’t protest too much. Fighting through her fatigue and still-sore underarm, Sophie managed to win two of her four heats, which is always exciting because she gets an on-the-spot ribbon. The day took a stormy turn however when Pat called shortly after her second race. He and Peter had left early so that he might steal a few hours work before commencement of Round 2 of The Clinton Wedding v. The Cocoon Theater’s Grimm Tales. A few minutes later my cell phone blared, the panicked expletives flying across the wireless network the second I said hello. When he was calm enough to speak, my heart sank as I realized Pat was telling me that he ran over our cranky but beloved Scout, a 15-year old Jack Russell Terrier, in the driveway. Peter had told him that Scout was behind the car and out of danger but she wasn’t. “The sound, the shrieking cry, I knew right away what I’d done!” Pat was already on the way to our vet when he called and didn’t know how badly she was hurt. All he knew was that her back left leg was bleeding and she was conscious. I didn’t want to tell Sophie during the meet, especially since I assumed we’d be putting her down. Scout’s been ill with a kind of doggie encephalitis for years and though she keeps springing back, bout after bout and to our vet’s amazement, I doubted she had the strength to survive this latest catastrophe. But Sophie overheard me on the phone when Pat called back to tell me the vet was examining her. She burst into tears with the news, which of course triggered the waterworks in me too. “What can I do, Mommy?” she pleaded. I suggested we offer a little prayer. It’s all I could think to say. And then my little girl did something that took my breath away. Right there on the deck of the pool, with frenzied activity all around us, she solemnly clasped her hands together, put them to her lips and nose, and closing her eyes, bowed her head in silent prayer. For that moment, the world around us disappeared, and I watched in awe as Sophie, still wearing her swim cap and goggles, quietly begged for Scout’s life. I hugged her so tightly when she was through that her wet form left an almost exact imprint on my clothes. When the phone rang again, Sophie’s tears began anew but this time the news was good: Scout would be okay. Nothing was broken, no ligaments torn, but she did have a significant gash on her paw that required 12 stitches. Our vet was amazed, especially given her age and precarious health. She would need anesthesia to be sewn up, and she was in significant pain – the lacerations went all the way to the bone, but with antibiotics and pain medication, she should heal. When I told Sophie the great news, she asked to speak to Daddy so she could hear the prognosis herself. Relieved but still unsettled, she kissed me goodbye when it was time for her next race. Yelling over her shoulder, grim-faced and determined, she announced “this one’s for Scoutie.” She won her heat by half a pool length, matter-of-factly delivering her ribbon to me for safe-keeping as she wrapped herself in a towel. By mid-afternoon Pat was home with a doped-up Scout, affording Sophie a few hours of vigil before it was time yet again to leave for the play. Pat, who is still a mess over the accident, stayed home to nurse the dog, and I took Peter with me to the performance. The stress of the day showed however, because Sophie started barking orders onstage, under her breath but clearly audible, whenever one of the other children missed a cue or line. It was funny, I laughed along with everyone else, but I knew the antics were born from the day’s traumatizing events. As soon as the show was over, Sophie ran out to ask how Scout was doing. She also told us that the director had the kids walking outside before the performance and the spectacle, 22 ducklings in a row, caught the attention of one of the newscasters hoping to catch a glimpse of the Clinton elite. “We’re going to be on TV, Mom!” Whew, what a day! Sophie was dead asleep as soon as her head hit the pillow but Pat and I had a restless night because Scout was feeling lousy and couldn’t stop whimpering. One more performance to go this afternoon and then we’re through. Until Wednesday, that is, when Peter turns nine and the Due Process Hearing resumes for three more days.
July 29, 2010
Tags: adoption, alanna ramirez, attachment, autism, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
July 27, 2010. Seven is no longer a number that holds purchase in our home. Sophie turned eight last Thursday and celebrated over the weekend with four girls at her very first slumber party. Lindy invited Peter to spend the night, enabling him to escape the mayhem and Sophie to enjoy her party sans her meddlesome brother. Miraculously, the girls were asleep before midnight and remained so until 7:30 the next morning. Sophie’s face still beams with the memories and Pat and I were thrilled to witness her exuberance. For 17 blissful hours, normalcy prevailed in our household, affording our daughter the rare opportunity to form childhood memories unmarred by Peter’s disabilities and the family upheaval they so often trigger. But I missed him. I truly did. And it’s not just because I’ve grown accustomed to the madness, though that’s certainly the case. I resent outright that it’s easier to navigate our lives without him because I don’t want to be without him. We adopted two children because we wanted to share our lives with them and theirs with us, because we wanted them to have each other, to know the intimacy of family life and experience a world suddenly within their reach. But the truth is, it’s not just easier for us to exclude Peter, its sometimes easier for Peter too. He would not have been able to handle Sophie’s party, the gifts, the attention, the noise, and the utter disregard for routine. He would have wound up in his room, raging, utterly unhappy and embarrassed by his lack of self-control. Sophie would have been nervous and on edge, waiting anxiously for Peter to fall apart or otherwise sabotage her celebration, a reality which the three of us each have experienced one time or another. By having Peter sleep at Lindy’s, we avoided the predicted catastrophe and at the same time afforded Sophie some much-needed freedom. So why, then, don’t I feel like the experience was a complete win-win? I suppose it’s because on some level we were admitting defeat. On some level, Pat and I were acknowledging that it wasn’t just that Peter might not handle a situation well, we know definitively that he doesn’t have the tools necessary to handle what for most is an ordinary childhood right of passage. Lots of brothers don’t want to be around for their sisters’ slumber parties, but Peter absolutely must abstain, for everyone’s sake. I grieve over the classic boyhood that Peter will never know, and for the manhood he should by right possess but will never fully inhabit. His birthmother and birthplace have conspired to strip him of these God-given opportunities. It’s my job to rebuild him, slowly but surely, in accordance with his own strengths and interests and without undue emphasis on my ideal of what he could, and should, have been. Peter was happy at Lindy’s, and I need to be grateful for that. At least I’m learning. I’m shedding, also slowly but surely, my own preconceptions about what I want for our son. His childhood may not resemble Pat’s or mine, or even Sophie’s, but he’s finding his way nonetheless. Every day I witness Peter coming more and more into himself, his smile less guarded, his stride more confident, his heart well-tended and beloved. Though my mind reflects back to the feral 3-year old boy standing in our bedroom doorway, covered in feces, I can barely invoke the image anymore. We have come so far, the four of us. Who cares if we sometimes must be apart to stay united? What matters is that we are united, that the feral boy whose piercing eyes haunted my dreams and consumed my thoughts is an ever-fading memory. Sophie is eight and on August 4th, Peter turns nine. Just as Sophie did last week, he’ll awake to birthday cake, lit candles, our silly birthday hat and song. Only a few years ago, he crouched like a frightened animal in the corner of his room when we attempted this early morning birthday ritual. But not this year. Peter’s ready. I know because he told me so.
July 17, 2010
Tags: adoption, attachment, autism, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized, red hook central school district
July 17, 2010. My head spins with the sickening realization that I’m a fool, an incredibly naïve fool. By requesting Peter’s educational records, I learn yesterday that I’ve been the target of criticism, suspicion, malice, and entrapment since Peter began first grade in our picturesque, adopted town of Red Hook, New York. It’s not just been the school psychologist who has maligned my character, questioned my motives, and actively sought to turn our confused, insecurely attached son against me. While I was striving for an open, honest relationship with Peter’s educational team, voicing frustrations, concerns, and victories as they arose, many in this group of teachers, aides, and other service providers were interviewing Peter and cataloguing my every word and action. Instead of working on the goals in Peter’s IEP (individual education plan), his “team”, with the school psychologist leading the way, spent a good part of the last three years peppering Peter for information about what goes on in our home. How we discipline him, whether he wants to go home (yes, his teacher asked him this in May), and whether he’s afraid of us (me). Where do these intrusive questions fit within the state mandated curriculum? I’ve been trying for the last three years to explain and educate Peter’s team about the complexity of his disabilities, particularly the double whammy of FAS and the effects of institutionalization, but I now realize my message, at times my grief and pain, was not received with compassion. And shame on me for thinking that it would be. Shame on me for thinking these people, with a few exceptions, would want to understand the difficulty and complexity of our journey, that they had the capacity for critical thinking and the good will to reach across the aisle and lend a helping hand. We have fought tooth and nail to win Peter’s trust and affection, what’s known in adoption circles as a healthy attachment, and the school psychologist and others have been actively sabotaging our efforts every step of the way. Had they the intellect or curiosity to read anything about attachment disorder or FAS, they would know that poorly attached children almost always target the mother; moreover, that these kids are adept at triangulating, lying, and manipulating their way toward temporary favor. Peter loves me, I know he does, but he would sell my soul in a second if he thought it would please any grown-up to whom he was speaking. Even Peter’s medical issues, which at times terrify us, have been the source of gossip, mistrust and circumvention. This past year, the school nurse, in cahoots with the school psychologist and Peter’s teacher, asked to see copies of his EEGs, test results from his urologist, and sought to gain direct access to his cardiologist. She even discussed at least one plot with the principal, informing him of her plan to tell me that she was not a cardiology nurse and therefore needed permission to speak to the doctor to better understand Peter’s needs. In the email to the principal, she states “it would be interesting to see if she [meaning me, Mom] balks at this request.” Are we neglecting Peter medically? Are we over-attentive? What exactly is the concern? I’m becoming nauseated as I write. There clearly was never any possibility that Peter would receive an appropriate education in this school. I’ve been banging my head for years against a steel wall forged from malice and distrust. As Pat and I spend sleepless nights worrying over Peter’s cognitive regression and ever-spiraling confusion, the people legally charged with his educational care for 6 hours a day are preoccupied with catching me in the act of a fictionalized misdeed. Dr. Federici and Dr. Aronson warned us long ago that the present situation in which we find ourselves is a dangerously risky scenario experienced by scores of adoptive parents of children like Peter. Certain schools, like Red Hook, seem to possess the audacity as well as the arrogance to act as judge, jury, and unfortunately for Peter and his precarious brain, executioner. We just didn’t think it’d happen to us, or more accurately, I didn’t think so. I’m the one that opened my heart, my feelings, my fears, and my hopes to virtual strangers with the idea they would one day become partners, allies, maybe even friends. Our family can’t weather my making these same mistakes again. I have to get smarter, stronger, and a whole lot wiser. We may have adopted Red Hook as our hometown, but its school, the fulcrum of this family-centered community, has not adopted us.
July 14, 2010
Tags: adoption, attachment, autism, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, Jane Aronson, orphan, Post-Institutional, post-institutionalized, Ron Federici
July 14, 2010. Sophie and I walk outside to leave for Peter’s swim lesson yesterday and find him standing on the lawn, catatonic. “What’s wrong, Peter?” Sophie asks, and then repeats the question, her voice crescendoing toward hysteria as the seconds proceed. Peter is standing in his Crocs and bathing suit, leaning slightly from the waist, his arms outstretched like a Marionette as drool spills from his mouth. His beautiful brown eyes are expressionless. “Peter!” I command as I quietly approach. I too am beginning to feel panicked. Has he had a stroke? A seizure? What’s going on? He won’t answer either of us, and Sophie’s on the verge of tears. “Peter!” I repeat. I’m about to have her run and get the telephone so I can call 911 when I see a single tear slip over the lid of one eye. I’m standing immediately in front of him and I reach to pat his cheek. “No don’t,” he manages. The tears are flowing freely now and despite the situation, my panic begins to subside. He is neurologically functioning. Otherwise he would not have responded to my attempt to touch him. “What’s wrong?” I say, taking a step back so that he knows I respect his need to work through this. Five minutes later he is composed and rational enough for me to piece together what happened, which is this: he was swinging and some sort of stinging bug flew into his mouth and bit him on the inside of his lip. Although he sounds and looks like his mouth is paralyzed, or perhaps full of Novacaine, I know that his quirky sensory system is completely overloaded by what would be a traumatic experience for anybody, and which is proving a surreally terrifying one for Peter. Each spring we have to coax him outside because he has an overwhelming fear of bugs. He can’t stand the sight, sound, or the feel of them crawling on his skin. The very thought of one stinging him sends him racing for the nearest door so quickly that the trailing sounds of his screams outlives his actual presence. So what happened on the swing is about the most awful thing his little mind could ever imagine, and he spiraled into a full-blown shut down. Although he won’t let me assess the damage, I know he’s okay once he begins drying his eyes and making other purposeful movements. My instinct is to load him in the car and take him to swimming; otherwise, I fear he’d fixate on the trauma and the rest of the day would be lost for all of us. Luckily, I’m correct. The cold water and the distraction of his lesson allow his sensory system to “forget” about the assault, at least for 30 minutes. I watch as he happily shows off his skills to “Coach” and then climbs out of the water with an easy smile when he’s finished. A round of ice pops for the ride home seals the deal. Or at least so I think. As soon as he finishes his treat, he again begins speaking like someone afflicted with facial paralysis. His lip had been a little fat but the temporary swelling is gone. The problem is that without anything else to occupy his focus, every fiber of his being is hyper-alerted to the injury, which at this point is all but imperceivable. By the time we pull in the garage, however, he can barely navigate his way out of the car. I have to keep calling his name and spurting out directions. “Now open the door.” Then, “Peter, get off the seat. Now climb out. Close the door.” And then finally, after what seems an eternity, “Good boy!” A few years ago I would have been annoyed by such a show of helplessness but now I understand its not a ruse. He’s not putting on a show to gain sympathy, treats or favor. A bee or wasp sting in the mouth to a boy like Peter is akin to being shot with a bow and arrow in a vital organ. It is shocking, painful, and most of all, a memory that is difficult to set aside. At least, that is, until tomorrow, when Peter’s world will be fresh and new, like it is everyday, unburdened by the lessons of the past, but equally crippled by the lost opportunity for wisdom they impart.
July 12, 2010
Tags: adoption, autism, biro, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
July 12, 2010. Yesterday Pat and I took the kids to Hancock, Massachusetts to visit a Shaker Village that once bustled to the peaceful, insulated rhythms of more than 300 souls. As we strolled the grounds, stopping to explore buildings or speak with the costumed gardeners, woodworkers, and other caretakers, I couldn’t help but think of Peter. I could almost see him there, transported to the early 19th Century, an young adult working in the fields, wearing rolled up sleeves and a straw hat, his sinewy muscles rippling under deeply tanned forearms. Peter seemed at home there, darting quietly between the slats of the magnificent circular barn, and walking between the apple trees, their fruit plentiful tart with greenness. Somehow his strange body language became exaggerated in this place, almost as though the environment didn’t require any accommodation. It was as though he sensed this, and gave himself permission to be free. His head leaning forward, almost lunging, I watched as he skipped irregularly along the planked walkways, his form shimmering in the heat like a lonely mirage as the distance between us increased. Happy in the private sanctuary of his revelry, a chaotic storyline I try so hard to penetrate, much less understand, I knew he felt peace in this place, a religious compound that closed its doors a half century ago. Although his brain often fails to make the connections that most of us take for granted, he understood implicitly the harmony that still permeates this village. Dr. Federici, when we saw him last month, told us that he knows of several couples who have “given” their troubled FAS adolescents to the Mennonites over the years. Funny how strange but absolutely logical that sounds. Peter would no doubt flourish in such a protected, insulated, simple environment, where members are expected to contribute to the extent of their abilities, no more or no less. Choices are greatly limited but so are temptations; an ideal template for those living with the crippling consequences of prenatal alcohol exposure. Not only could a youth like Peter be safe and remain safe, he could be productive and experience genuine fulfillment. The very notion would be entirely intoxicating except for one serious, sobering drawback: the parents must agree forever to relinquish custody, guardianship, and any future relationship with their child. Although I can envision Peter living contentedly among the Mennonites, I glimpsed as much in a hazy dream during our visit to the Shaker Village yesterday, I cannot envision living without Peter. In the last declining decades of the Shakers, most of the men had left the movement, leaving the remaining women no choice but to hire male laborers to work and live among them. If only Peter could reach across the time-space continuum, he might find refuge there in the fast approaching decade of his own adolescence. Pat and I might find peace too, peace in knowing that we found a place where our Russian son could live safely, in pursuit of a purposeful existence, and where simplicity is a gift, not a hindrance.
July 5, 2010
Tags: autism, biro, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
July 5, 2010. Peter’s newest obsession is water, and like nearly everything with him, it cuts both ways. The positive side of the equation is that one of Sophie’s swim coaches has been working with him in the morning and thinks he has real potential, something Pat and I frankly never considered. Swimming is all about discipline, self-imposed discipline at that, and learning and mastering strokes, at least beyond the dog paddle, requires significant motor planning. For years I religiously enrolled Peter in summer swim lessons, which were more or less disastrous. The water was cold, he didn’t like people touching him, and he couldn’t seem to move his arms and kick at the same time. I wound up teaching him to swim myself, and though it’s never been pretty, I was confident that he was safe in the water. But like so many things with Peter, time has a way of instructing. Maybe he wasn’t developmentally ready then. Maybe he is now, I’m not sure. But wouldn’t it be great if he was? Wouldn’t it be fantastic if he could follow the routines, experience a sense of real physical accomplishment, and be surrounded by typical, positive role models? Maybe at 9 he’s ready. If we did give swim team a try, the coach said he would swim with the younger kids because despite his age, he’d be in the beginning group, which is perfect. Unsupervised showering and dressing in the locker room however, is another matter altogether. Pat would likely to have to meet me at the end of practice because there’s no way Peter can attend to the steps necessary to shower and dress while surrounded by a mob of rowdy boys. He can’t manage these simple skills at home under close supervision. The whole swim team proposition is riddled with maybes and what ifs and but hows, but still, the possibility is appealing. The less appealing part of Peter’s recent interest in water, however, has to do with his pouring it on himself, usually in a semi-private place like the bathroom or his assigned third row seat in my Toyota Highlander. Water bottles are now his new favorite thing to empty, and not via consumption. Because Peter is both clumsy and prone to disruption, we’ve always limited liquids in the car to just water. But for the past several weeks he’s taken to splashing water on himself in the sink and emptying water bottles in the back of the car. It’s not the end of the world – its just water after all, but the behavior both annoys and puzzles. I’m half thinking that because the water tends to be warm sitting in the car this time of year, he may be trying to replicate the feel of hot urine on his skin, which claims he likes. I haven’t caught him in the bathroom yet, but maybe he’s using hot water there too. I can’t think of anything else that would be triggering the behavior, but then again, like so much of what Peter does, often there is no plausible antecedent: just raw impulse and the tools at hand necessary to act on them. In the past, we’ve weathered lotion-dumping themes, carving into leather furniture themes, defecating themes, spitting themes, stealing themes, and night-wandering themes. The water obsession is the most benign theme we’ve encountered in some time, so I guess I should count my blessings. Especially if it transfers even semi-successfully into an interest in organized, and for Peter, brain organizing, swim.
July 2, 2010
Tags: adoption, attachment, biro, birobidzhan, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
July 2, 2010. So much for spending lazy summer mornings in our pajamas. The LoBruttos are rising an hour earlier than the regular school year schedule because Sophie’s on the summer swim team. We are at the town pool, which is unheated, by 7:15 am, five mornings a week. The lows for the last several mornings hovered in the low 50s. Brrr! More than once Sophie has emerged with blue lips and fingertips. By today she may be frozen solid. Peter starts summer school next week, a program initially denied to him by the school under the theory that he is doing so well he doesn’t need it. Luckily our filing for hearing prevents them from implementing such an ill-conceived directive. His 6-week program begins Tuesday. This week has been difficult for him, as it has been for me. Sophie is busy with her activities and friends and Peter has little to do, despite my trying to put him on some sort of recognizable, organizing schedule. Right now he’s downstairs working with Lindy, who will try her best to undo the cumulative damage of several days with no routine. He’s filling his Pullups with so much urine that last night the crotch of his diaper protruded down one leg of his shorts, causing him to walk like an old man with an acute prostate problem. And still he looked me in the eye, insisting he was dry. I’m sending him to use the bathroom approximately every 20-30 minutes, which is no picnic for either of us, but still the problem persists. “I don’t pee in there, Mom,” he announces gaily. “Sometimes, but mostly I play.” The very idea of trying to toilet train an almost 9-year old while preparing madly for our endless Due Process Hearing, instigated because the school has lost its collective mind and continues to adhere stubbornly to the fiction that Peter is educable in a large classroom setting, offers many layers of irony. But its 4th of July weekend and I don’t want to go there. Not right now, anyway. This afternoon we’re going to the pool and then tonight we’re heading to the Fairgrounds to watch a rodeo and after that, the fireworks. I hope the evening is as full of old-fashioned, small town fun as I’m envisioning it will be. All I ever wanted to do was help our son, but when reason, hard evidence and sugar produced no results, I’ve had no choice but to put on my boxing gloves and get tough. In the process I’m afraid I unwittingly may have created the persona of a crazed mother on a jihad, but there’s very little other choice. If I keep shouting our story from the highest ridge, my voice ringing through the dips and crevices of the valleys below, my plea for our son just might reach the heart and mind of someone, somewhere, who’s in a position to intervene, who can and wants to stop this madness. But this weekend I want to set these worries, this mission, aside. This weekend I just want to be Mom. I want to have fun with my kids and my husband. I want to shield Sophie’s eyes from any scary parts of the rodeo and run back to the car with Peter in tow if the booming fireworks are more than he can handle. I want to put the kids to bed early one night and coax Pat into a relaxing, romantic evening where we can escape our problems, if only for a few, stolen hours. Most importantly, I need to remind myself that what Pat and I are doing right now is not a sustainable, much less desirable, life pursuit. It’s temporary, and it will pass. We will have a life beyond fighting for Peter’s rights and his future. But in the meantime, we’ll have to settle for stealing snatches of normalcy when we can, like this weekend, for instance. I smile just thinking of Sophie singing You’re a Grand Old Flag in the backseat on the way to the lake. Such a small little dream, but I sure hope it comes true.
June 26, 2010
Tags: adoption, attachment, biro, birobidzhan, Dr. Jane Aronson, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
June 26, 2010. I spent Peter and Sophie’s first day of summer vacation in our third week of the Due Process Hearing. With still no end in sight, we received yet another affirmation from the school district that they’re unwilling to discuss settlement. As of now we have dates scheduled into August, including August 4th, which is Peter’s 9th birthday. I don’t think anyone involved in the hearing besides Pat and me sees the irony in the fact that none of them, including those who espouse their unfailing commitment to our son’s educational and emotional development, i.e., the school, can suggest or commit to a single alternative date. But that’s okay, we’ll make up for it. Peter knows who loves him, its wonderful to be able to say and believe that, and no one can take that away from us. After yesterday’s considerable shenanigans were through, we picked up Sophie at her friend’s house and met Peter at the town pool, where he spent the day with his best buddy, Montana. He gave me a big wet hug, brown as a surfer and with eyes groggy from spending all day in the sun and water. When we get home he tells us that before they went to the pool, he played video games, watched TV, and Montana’s oldest brother, a nice kid who’s 16, wrestled with them and gave the boy’s Dr. Pepper and lots of sweets. With that good news, we put the kids to bed early and I succumbed not too long afterward. I fell asleep to the click click of Pat’s keyboard as he squeezed in a few hours of work. He was as tired as I, but the nagging worry of falling too far behind kept him energized a while longer. This morning the kids don’t wake until 8:30, which is a minor miracle, so Pat and I head down to breakfast feeling much more human and ready for the day. Within minutes it’s apparent the quadruple whammy of electronics, wrestling, caffeine, and sugar are still coursing through Peter’s body, wreaking mayhem on his delicate nervous system and metabolism. As is often the case, we’ll pay the piper today, and possible tomorrow and the next, for yesterday’s lack of regimen. On all fours, Peter bucks himself wildly on the tiled kitchen floor, his knees already off the ground before I realize what he’s doing. When his legs come crashing down, as gravity always insists they do, he howls in pain. His bewildered expression confirms that he didn’t foresee the consequences of his actions. The rest of the morning proceeds similarly. My son has morphed into a throbbing, pulsating bundle of raw impulse with two moderately bruised knees and a wicked summer tan. When I head barefoot upstairs to put laundry away, I step onto various urine-soaked spots on his carpeting. I also find Sophie’s toys stashed under his bed and soiled underwear stuffed behind his dresser. Where there’s urine on Peter’s floor, there’s usually urine on Peter, and sure enough, I find him downstairs getting ready to play outside, completely unaware or unmoved, I’m not sure which, by the fact that he’s leaving a trail of piddle behind him. I guiltily relish the knowledge that in a half hour I’ll be left alone in the house for a considerable chunk of time. Pat’s taking the kids to his mother’s because his brother and family are visiting for the day. I have cross-examination to prepare for our next hearing date and so I’m meeting them later, around dinnertime. It’s extremely difficult to work with the kids in the house, especially Peter, even more so given the aftershocks of his complete freedom yesterday. As I gather my hearing materials and prepare to work, I find myself surprisingly calm, and without resentment. We’re fighting for a proper educational placement for our son, a program that can stretch his brain toward higher function rather than confuse it into submission and eventual mush. An important and necessary battle, certainly. But what’s clear is we’ve already won the war. Peter’s not going back. One way or another we’re keeping him safe, preserving the promise that’s left in his brain from further deterioration; that in itself is both gratifying and comforting. It’s like his wild, carefree day yesterday. He had fun but at too high a price. He’ll suffer from the after effects, which means so will we, much longer than he reaped the benefits. And it’s really no different with the school. The marginal social improvements simply aren’t worth risking further cognitive decline. It’s a simple cost benefit analysis. The unfortunate part is that the school’s done their own cost-benefit analysis, and I guarantee it’s not a metaphorical one. Inclusion is cheap. An appropriate program for Peter, a program designed to stimulate his brain but not his body, a program based on a neurocognitive approach such as those used with classically autistic children or the brain injured, is not. But he’s going to get it, one way or another, even if it means implementing one myself. Dr. Federici’s recent evaluation once again has confirmed for us that Peter’s not the boy that can fly high all day and bounce back. His brain, his very person, is too fragile. It’s taken nearly 6 years to teach Peter to love and trust. I will never again allow personal agendas, or in some instances, maybe even vendettas, plunge our son into an abyss of regression from which his heart and mind might never again emerge.
June 21, 2010
Tags: adoption, attachment, autism, biro, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism
June 21, 2010. Despite a rough morning, Peter rallied beautifully and we were able to celebrate a wonderful Father’s Day with Pat. His beloved granddaughter, and his oldest daughter Jennifer and her husband, drove from New Jersey for the afternoon. At 19 months, the baby is a dizzying blur of delight. It was a hot, happy day, filled with fresh berries, burgers, hot dogs, and corn on the cob. The waters of the gulf between Pat’s old and new lives were calmer and somehow less vast than they sometimes seem. I think everyone felt it, Sophie and Peter included. I was so grateful that Pat wasn’t made to sit on the fence between alliances. We are one family and we all belong to him, and him to us. Baby Gia, at the age where everything is new and worthy of exploration, found tremendous joy in whacking the dogs’ water bowls with a wooden spoon. Later, after they left, we watched The Indian in the Cupboard with the kids and Grandma. Peter snuggled with me on our big green velvety chair and I drank in the smell of his freshly shampooed hair in the sublime stillness of the moment. These intimate occasions, though still not common, and definitely not a given, are occurring more and more often, and with less and less awkwardness. Pure bliss is what they are. With 4 days left of school and no real lessons on the horizon, we let the kids stay up later than usual. The movie, like the book, captured their imaginations and I listened with great joy to Sophie’s running comments directed at the characters on the screen. This morning they are both like overcooked noodles, though, as we try to pry them from their beds toward a more vertical position. Summer vacation comes late in the Hudson Valley and Sophie and Peter are past ready for the school year to officially end. Peter’s 3rd grade swim party is today which I miss because I’m currently in 24/7 Due Process Hearing mode. Dr. Federici is concerned that Peter is experiencing “break through seizures” and has urged us to get another 24-hour EEG and MRI. None of those have been scheduled yet so now that the town pool is open, I have been keeping an extra vigilant eye when my son’s in the water. Peter had an episode on Saturday that scared us both. He seems to have lost swimming skills over the winter and struggled underwater to the point where he threw up in the pool. I don’t know whether he had a seizure or just panicked but something definitely happened and his proficiency in the water has definitely diminished. “I almost drownded, Mommy!” he cried. “I do not know what happened but I couldn’t get up to the top of the air.” Worried, of course, about today’s swim party, I write to his teacher, who I just have spent two days cross-examining at the hearing, and ask that he stay out of the deep end, explaining in an abbreviated way my reasons. When I pick Peter up this afternoon, exhausted but happy as he sucks on a ring pop that turned his teeth green, he informs me that he “passed” the swim test and was allowed to swim in the deep end. I was terribly angry, of course, with all kinds of colorful expletives racing through my head as I smiled to the other parents as we left, but I also was relieved he was okay. Why certain persons at this school feel entitled to supplant their judgment for ours, I will never understand. If I had relayed this kind of information to Sophie’s teacher, for instance, she would have been on it like a hawk on road kill. I have no doubt whatsoever. But there’s something about Peter, or me, or the bizarro world of special education, that invites constant criticism, constant second-guessing, and endless usurpation of parental prerogative and wisdom. The unforgiveable part is that Peter really could have been harmed, even killed, if something had gone wrong. In three more days though, Peter will be saying goodbye to Mill Road Elementary for good. He is not returning. The stakes are too high. He is done and so are we. A new chapter in his education, and hopefully his future, is around the bend. Don’t get me wrong: I was thrilled to see his goofy green-toothed grin today. He had a great time, and for that I’m grateful. But also make no mistake: I’ll be much more grateful come Thursday at 11:45, when school’s dismissed for summer. Its just one more important step toward divorcing ourselves from the turmoil of Peter’s integrated education that constantly distracts us from the business that matters: our family. Happy Father’s Day, Papa!
May 20, 2010
Tags: "Russian boy", adoption, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, Hansen, international adoption, post-institutional autism, suzanne d'aversa
October 15, 2007. The script for Peter’s synthetic B12 injections arrive today. The geneticist has been trying to track down a drug manufacturing company to make this formulation for the past four months. In June, we learned that Peter lacks the enzyme necessary to metabolize B12, which means the vitamin can’t get into his cells, a genetic deficiency which negatively impacts normal brain development. The kind of B12 he’ll be receiving relies on a different enzyme for metabolism. If we see improvement, he’ll need these shots every other day for the rest of his life. Although I’m excited over the prospect, however slim, of Peter’s autistic features and brain function improving, I’m equally wary that the injections will turn out to be another dead end. There have been so many dead ends in our quest to improve our son’s conditions and I fear the cumulative effect of lost hopes. Later in the day I tell Peter what’s in store and as I focus on how he’s handling the news, Sophie begins to cry. “Don’t do this to my brother,” she says. “Please don’t do it, Mom.” I have never loved my daughter more than I do in this moment. There are so many things wrong in our household, so many days gone awry that end in tears or angry outbursts, yet this tiny five-year old reminds me that first and foremost, we are family, and that we love each other. Peter may be relentless in his efforts to upset and tease Sophie, but he is her brother and in this perceived time of crisis, his offenses slip easily from her mind in favor of solidarity. Sophie reminds me of the need to shed my own resentment and anger, pestilent feelings that too often color how I view, and undoubtedly on occasion treat, Peter. I pull both my children close to me and kiss the tops of their heads. I do my best to explain why Peter needs these shots and how they might help. Then I silently pray my son forgives me for subjecting him to yet more physical assault. I thank God for allowing Sophie to instruct me in the art of unconditional love and I pledge to hold against my heart the gift of her lesson.
Chapter 22: From Albany to Virginia
Our work continued with Sue over the course of the next few months. Peter’s transformation on Risperdal was nothing short of miraculous. Although not a magic bullet, the tantrums, the toileting escapades, and much of the other unmanageable behaviors either diminished significantly or disappeared altogether. Each night I drifted off silently thanking the pharmaceutical company that manufactures those tiny round pills so that parents like Pat and me might occasionally sleep with both eyes closed.
The other noticeable difference had to do with Peter’s speech. Despite speech and language therapy twice weekly, which had begun six months or so earlier, we hadn’t noticed much improvement before Risperdal. I don’t know why the medication helps so many autistic kids and other children with autistic-like brain disorders, but there’s no doubt it works. The medicine didn’t bring him out of his fog entirely, but the change was like the difference between a fog so thick you can’t see your own hand in front of your face and one where visibility is low but its still safe, let’s say, to drive. To us it felt like a clear, crisp fall day, the kind of day where a steady stream of blowing leaves filters and purifies the air. Without warning, pronouns began to show up, as did plurals and even a few conjunctives.
He was becoming another child, at least for a while. Sue began making small but noteworthy inroads, optimism returned, and I found myself anxiously awaiting each Tuesday so that Peter and I could make the trek to Albany and learn something new I could then take home and practice. But then something happened and the medicine seemed to stop working, not all at once but slowly, like a slithering snake. Over a period of weeks the aggressive edginess returned, the dizzying mood swings, the rages that seemed to last for hours and that left Pat and me feeling like we’d been slowly dismembered by a rabid forest animal.
This unexpected downturn lead to more drugs, and sometimes different drugs, though nothing brought back the window of opportunity Peter experienced during those first virgin weeks on Risperdal. We gave Ritilin a try, but stopped after watching our son sob uncontrollably for three days. Then we added Risperdal back but at a higher dosage. The unwanted behaviors only escalated. We’ve since learned the Risperdal dose that works best for Peter is an extremely low one, .5 mg twice a day. So far age and growth have not altered this fact, though we have tinkered with dosages now and again, just to make sure.
Pat and I knew that yielding to the temptation offered by medication would be a tricky proposition, but we had no idea of the emotional rollercoaster it entailed, both for our child and us. We were confused, frustrated and angry. We weren’t happy with the prescribing nurse practitioner because every time we went to see her she asked the same solitary question: “What behaviors are you trying to control?” She barely ever spoke to Peter and she certainly didn’t interact with him or make any effort to evaluate or understand his problems. To us she seemed nothing more than a dispensary. She was also not accessible by telephone. Every single tinker of medication, every little report of a possible side effect, or change of dose required a $75 cash-only, 5-7 minute office visit, with Peter in tow. I found myself making the trip to Albany two or three times a week. It was ridiculous, expensive, time-consuming, and entirely unfair to Peter, who once we arrived, was completely ignored.
Sue was sympathetic when we shared our complaints, but she also offered a gentle reality check. There are very few child psychiatrists within a 90-mile radius of where we live and waiting lists can reach well into the following year. Second, medicating children for psychological disorders is an unpredictable business, even more so than it is with adults. This was especially true in Peter’s case because we had no family history and no confirmed diagnoses from which to make at least a few education guesses.
So we kept plugging along, returning eventually to our original dose of Risperdal, but without much forward progress. For instance, during one session I shared with Sue that Peter threw a stone directly at Sophie’s head, and so then he and Sue reenacted the incident using rubber frogs on the floor of her office. Although she did her best to tease from our son a rudimentary sense of empathy, responsibility, and cause and effect, in the end, her efforts proved largely fruitless. Peter showed no understanding or interest in what she was trying to accomplish and he often behaved sarcastically, certainly passive-aggressively, toward her. Before long, it was clear we had reached another stalemate and Sue finally said as much one afternoon. I knew it too but our sessions, though frustrating in terms of Peter’s progress, benefited me tremendously. I wasn’t ready to give her up, even if she knew it was time to turn Peter over to someone more specialized. In some ways, over the course of our year together, I had become the patient.
I remember Sue smiling sagely when I brought this to her attention. She implicitly understood my struggles in a way no one else besides Pat ever could have imagined. But we weren’t there for me, at least officially. Helping Peter was the goal and primary purpose. “I think his problems are organic,” Sue broached. “I think there’s some physical damage. Neurological. His responses are the same no matter what we do. It just doesn’t add up.” I knew in my mind if not my heart that I was hearing the truth, so I nodded slightly. “It’s beyond what I can do,” she whispered. “Let me make some calls and see what I can come up.”
When we left that afternoon I hugged Sue goodbye and then ambled out of her office with Peter’s hand firmly gripped in mine. When I let go, he ran to push the button on the elevator, something he still enjoys doing, and my stomach sunk as we descended to the ground floor, knowing full well the two of us were on our own again, flung lovingly, but irrevocably, from the comfort of Sue’s nest.
While I waited for Sue to make her calls, I began making some of my own. My first was to Jane Aronson, our trusted ally in what had proved to date a very bumpy adoption journey. I had made this call before, without much to show for it, but I knew I needed to try again. Sometime after we had started vocalizing our concerns about Peter, but while we were still in the stage where everyone kept advising us “to give it time,” I sent an email to Dr. Aronson, asking for help. She suggested we visit a therapist in the city, and so we made an appointment.
Despite hearing the problem was Peter, the therapist asked to meet us alone, as a couple. So we arranged aftercare one day at the kids’ preschool and dutifully drove into New York for our childless appointment. The therapist was stylishly dressed, older, and I distinctly remember her asking whether we’d like some iced tea. I smiled because the offer was so Southern; in fact, I don’t think anyone had ever offered me iced tea since moving up north. After 30 minutes or so of extracting our personal histories, she announced that our problems with Peter, and mine in particular, were a direct result of my not having sufficiently grieved over my miscarriages and infertility, as well as the loss of Ben, the baby we turned down in Russia.
I recall scrambling for the elevator, speechless and in shock, as Pat stayed behind to scribble out a hefty personal check. We were both fairly quiet in the car for the first few minutes but then Pat slammed his hands on the steering wheel. “That was complete bullshit!” he screamed. “My God, did it not even occur to her that we’re doing fine with Sophie?” I began crying after that but not because his outburst upset me but rather because it gave me permission to release all the pent-up confusion and frustration I’d been holding inside since that woman with her pitcher of iced tea first opened her mouth. Needless to say, we chose against scheduling a second appointment. Pat drove home with my head resting in his lap, where the tears subsided in favor of the calming warmth his presence most always offers me.
Luckily for us, enough time had passed since then that I was willing to give Dr. Aronson’s recommendations a second chance. After all, how could she know the therapist she referred us to would suggest I was the one interfering with Peter’s attachment and generally causing all our family’s problems? And besides, by that juncture, we’d spent enough time with Sue, a known and respected expert in the field of attachment, to know in our hearts, once and for all, that Peter’s problems were bigger than us, and that neither of us had caused them.
So the second time I called Dr. Aronson’s office to get the name of someone to whom we might bring Peter, she didn’t mince words. “It’s time to see my friend Ron Federici. He’s the best, Mary. It sounds like this is a serious problem. I’ll call him first to see if he can get you in sooner than later. Give me a day or two, then call yourself. In the meantime, look him up on the web.”
True to her word, Dr. Aronson made her phone calls to advocate on our behalves, and we were able to plan a trip to Virginia to see Dr. Federici within three weeks. As far as I can tell, her intervention saved us about four or five months of waiting for an available appointment, and therefore further decline.
Ronald Federici is a board certified clinical neuropsychologist with a host of other impressive credentials too numerous to list. He’s also the adoptive father of seven children, many of whom were rescued from Romanian orphanages in the 1980s and early 90s. International adoption, and more specifically, the developmental, behavioral, and emotional issues that plague orphanage children, which in turn wreak havoc on the grossly unprepared lives of their new, mostly well-intended parents, is both his business and passion. The prospect of meeting this man, and having him examine our son, felt both exciting and worrisome. After reviewing the materials on his website, and watching some of the video clips from various interviews and public appearances, it was clear this man knew his business. He also seemed tough, a real roll up the sleeves kind of guy. Though I couldn’t predict exactly what he would say when our visit was through, I knew it’d be substantial, as well as life-altering. In the private chambers of my heart, where my deepest fears are lodged, I’d always felt there was something wrong with Peter, something serious and not amenable to an easy fix.
The waiting period flew by because it’s not easy to prepare for a trip to see Dr. Federici. The amount of paperwork to be filled out rivaled what I imagine an IRS audit process requires. But we did it. The extensive background questionnaire, the rating scales, the teacher forms, and copies of all past evaluations. The list goes on and on but I understood then and still do why he insists on being able to study the child’s entire “knowable” past from every possible angle. With kids from Russia, and I’m sure other countries as well, there is no prenatal or birth history, no family medical history, no history of any kind prior to adoption. Even vaccination records, which some orphanages provide, are suspect and which is why many parents opt to revaccinate their children once in the United States.
But none of this bothered me. Like filling out the droves of pre-adoption paperwork, I was very motivated, almost as though I was jump-starting the engine that would lead us toward our son’s restored health.. The only real difficult part of Dr. Federici’s pre-appointment requirements had to do with his position on medication. He feels that children should be evaluated, whenever possible, without benefit of behavioral medications in order to establish both a baseline and to accurately identify any underlying organic or psychological conditions. Although we agreed to this prerequisite, tapering Peter off Risperdal was no romp in the park.
I think after a time, most parents with children on behavior medications often start questioning whether the meds are still working. However, all any of us have to do to reassure ourselves otherwise is to slowly and properly withdraw the medication(s) and observe what happens. It’s not a pretty process, at least it wasn’t with our son, and it was painful to watch him backtrack. Every day a few more of the unbearable behaviors returned, some of which we’d almost managed to forget: playing with poop, “da tee tee da da”, and spinning like a top on amphetamines, just to name a few. By the time we were ready to leave for our 5-day sojourn, Pat and I were pulling our hair out.
But as when we started working with Sue, there was still something invigorating, even hopeful, about embarking on this mission to Virginia. I imagine it’s a little like fearing you might have cancer but are too fearful to visit the doctor. Denying reality has its drawbacks and almost always backfires. There can be great relief in finally confronting the truth and then formulating a plan for addressing it. I felt like I’d much rather go down trying then continue to fool ourselves about the seriousness of our problems with Peter. Cancer can be treated, and more and more often cured, with proper intervention. Despite real trepidation, I was hoping the same held true for our son.
And we wouldn’t be traveling alone. By this time we had convinced Pat’s mother to move from West Palm Beach back to New York to be closer to us, her other son John, and her five grandchildren, old and new. We bought a little house about a mile from ours and Pat used part of it as his office, which worked out perfectly. His mom had company and Pat had a quiet place to work, away from the noise and commotion of our bustling household.
Despite her age (81 at the time), Pat’s mom insisted on taking the 6-hour trip with us to watch Sophie during the first day of neuropsychological testing and participate with the rest of us in the subsequent 2 days of behavior intervention. Pat’s mother has this amazing ability to keep the two of us sane, and perhaps because we try harder to achieve some balance toward the kids when she’s with us, we always seem happier as a family. She’s somehow able to deflate our ever-ballooning feelings of despair and exasperation with her wit, advice and example. Though she loves our kids completely, she worries about their futures as much as we do, especially Peter’s. But she also accepts their pasts as part of who they are, and never seems to take their behaviors personally. If she were only 50 years younger, I believe she would be the ideal candidate for parenting alcohol exposed, attachment-disordered children. As it is, she’s a Godsend in my life.
When we left early the day before the evaluation, car packed, DVD player poised for Finding Nemo, and the cooler filled with snacks and drinks, it almost felt like we were leaving for vacation. Poor Grandma, who’s tiny even by Sicilian standards, was sandwiched in the back between Sophie and Peter, who were both still in car seats. It was a long trip, to be sure, but we arrived early enough to get situated in our rooms and settled. The hotel unapologetically flubbed our reservations and gave away the adjoining rooms we were promised. So Pat wound up sleeping with Peter in one room and I stayed with Sophie in the other. Grandma deserved her own room.
Late that afternoon we walked around Fairfax, which is a beautiful, historic city dating back to the 1700s and within shouting distance of the District of Columbia. We chose what looked like a kid friendly restaurant and enjoyed a decent, if not spectacular, seafood dinner. Peter made himself vomit at the table, but luckily not until we were mostly finished. Thinking he was sick, the waitress was sympathetic. As is usually the case with those who briefly peer into our lives, she undoubtedly failed to understand, much less appreciate, why we left in a disgusted, embarrassed rush.
After the dinner that was cut short, we walked until we found a big green space where the kids could run off some energy before going to bed. Because we wanted Peter well rested for the next day, both kids were tucked in by 7:45. I read for a while and then Pat and I emailed back and forth from our laptops, neither of us savvy enough to have figured out “live chat” or Facebook. In a way it was a little romantic, we’d never been separated in a hotel before, and each time I clicked the send button I’d wait anxiously for his cute, sometimes flirty replies.
Meeting Dr. Federici the next morning was an unforgettable experience. His office was nondescript, very low key, the way I think all offices of this type should be, but as soon as he walked into the waiting area the energy level increased tenfold. Tall and a little lanky, he possesses this booming, fast-clipped voice that leaves no doubt about who’s in charge. We have taken our son to see Dr. Federici three times, but on this first visit he spent 45 minutes or so with Pat and I before he took Peter for testing. He wanted to hear our story, our adoption history, including the foul-up with the baby we called Ben and our decision not to move forward with that adoption.
While in Russia, the orphanage director told us that Peter’s teenage mother came to visit him 3 or 4 times and brought an apple, but then stopped coming. When we got to that part of our story, Dr. Federici interrupted and said, “I know – the mother brought him an apple.” Pat and I just looked at each other. Despair and astonishment swirled inside our foolish brains with sickening synchronicity. How could we have been so naïve as to accept as truth this pitiful, rote attempt on the part of the Russians to prove a bond, a connection, to offer a hint of reassuring hope that someone nurtured and loved our child as an infant? They must think Americans terribly stupid, and at that moment, I wasn’t in a position to dispel any myths.
When we finished unraveling our tale, Dr. Federici paused for a minute, leaned toward us and said in a softer, more solemn voice. “Let’s get this mess figured out.” Standing up, he shook our hands, exchanged Italian niceties with Pat’s mother, and then handed us a stack of additional forms and questionnaires to fill out while we waited. We were to take Peter with us at lunchtime and return him for more testing in the afternoon. Busy banging something on the floor, Peter failed to answer the first time Dr. Federici called his name, which I found surprising because I nearly sprang to attention at the sound of his commanding tone, and so did Grandma and Sophie. He didn’t bother asking a second time. Instead, he leaned over, took Peter by both hands and without a hint of roughness pulled him firmly to his feet. “It’s time to come with me now, Peter,” he said. I bit my lip as I watched them turn the corner. Our son never even looked back.
Although I had a sense of what lay ahead, at least partially, the unknown diagnoses we were on the brink of receiving were terrifying to contemplate. Autism was already a key suspect because of the previous questionnaires we had answered. I had been asking “experts” for two years why Peter flapped his hands, walked on his toes, repeated his name, pulled his toys apart, was often unresponsive, tantrumed excessively, and spun in circles. I still don’t understand why, up until then, the various professionals in our lives couldn’t see the obvious because every single one of Peter’s puzzling behaviors, which he exhibited routinely, was on the parent autism questionnaire. It was abundantly clear to me by the time we reached Dr. Federici’s office that our Russian born son was somewhere on the spectrum, so I was prepared for that. I was also prepared for a diagnosis of alcohol exposure, if not full-blown FAS. Jane Aronson had primed us for that culprit within ten days of our bringing Peter and Sophie home.
When the testing was through, Peter emerged bouncing and toe walking, with an impish little smirk on his face. We had brought plenty of toys and books to occupy Sophie during the long day but Peter simply walked over to the stack of adult magazines and started turning the pages to Newsweek robotically. Dr. Federici motioned us into a conference room, a tiny bit exacerbated, maybe a little amused, and definitely shaking his head.
“The little bugger snuck one over on me,” he said with a hint of disbelief. “You’ve got a sneaky one, there. When we were taking a break, and I saw he was doing a puzzle, I took the chance to use the restroom. I was gone thirty seconds, no more. I swear.” By this point I was fairly nervous. Looking over, I saw Pat squirming in his seat. Whatever happened was not good. “And somehow he managed to destroy my office!”
I remember thinking the damage must be substantial for the unshakeable Dr. Federici to sound so astonished. “In less then a minute, he took my letter opener and slashed my leather desk chair, he pulled every single plug out of the socket, swept my desk clear, he did something to my. . .” and then his voice trailed off. I didn’t know what to say. Either did Pat. We’d become mutes glued to our chairs. Horrified, I envisioned getting slapped, unceremoniously, with a damage bill for $10,000 and a concurrent invitation to never return.
“I gotta give it to him,” he finally continued. Then he looked up, shook his head, and though I can’t be certain, I think he smiled. He must have read our thoughts. “It’s okay, guys. My fault. I got fooled. By a 4-year old. Honestly, it’s a good lesson. I didn’t think it was possible anymore.”
Although relieved we wouldn’t be applying for another equity line of credit, it was unsettling to hear that of all the thousands of children he’d seen, ours was the one to pull a fast one over him. I felt like I needed to apologize, profusely, but as soon as I started sputtering, he waved me off. “Listen. That’s over. Here’s what matters: I know what to do. There’s good news and there’s bad news.” He paused to make sure we were listening. Taking his cue, I did my best to erase the image in mind of Peter slashing a leather chair, but it wasn’t easy. “Okay. I’m gonna start with the bad.”
So we listened and took notes. Peter was autistic. Although his behaviors fell squarely in the moderate range of the spectrum, Dr. Federici felt other factors, including his early institutionalization, were causal factors for his symptoms. He therefore believed the most appropriate diagnosis was “high-functioning autism” or PDD-NOS, which stands for Pervasive Developmental Disorder Not Otherwise Specified. Seems like a catch-all, and maybe it is, but what it really means is that the person isn’t “classically autistic” but also is too impaired, including intellectually, to meet the criteria for a diagnosis of Asperger’s Syndrome. On the spectrum, PDD-NOS falls more or less in the middle. This was not good news, of course, but Dr. Federici made clear that autism was the least of our problems. This was hardly a comforting statement to hear right after being told our child was autistic.
Peter also had full-blown Fetal Alcohol Syndrome, his symptoms and impairments falling within the mild to moderately affected range. This news, though not surprising, was particularly difficult to hear. It was the one possibility that truly terrified Pat and I since the onset of our adoption journey. We tried so diligently to protect ourselves, as well as our future family, against this devastating condition but now we knew our efforts had failed. “But it could be worse,” Dr. Federici jumped in as he watched our faces fall. “Most kids I see with FAS are retarded. Peter’s not. His IQ is low, but in the low average range. And with the right help, I’m certain we can raise it. The autistic traits too – they’ll improve. The autism is secondary, like a side effect – to both his early institutionalization and the FAS. The point is, he can learn. He can improve. Believe me, I often sit in this very seat and tell parents there’s really very little to be done. It’s devastating. But Peter can be helped.”
I have this horrible problem, or maybe condition, I’m not sure, where my face turns beet red whenever I drink (which I rarely do), get angry, upset, embarrassed, even slightly overheated, or when I feel a migraine coming. Since this covers a lot of territory, I’m forever feeling like I look either drunk, sunburned, or on the verge of a coronary. My mother had the same problem so maybe its hereditary. I could feel the heat rising in my face as I took in the news, trying desperately to understand how an IQ of 80, autism and FAS were not such bad things.
Next, he said we should have our son evaluated by a neurologist because he was concerned Peter was having seizures. “Why?” I asked, puzzled. No one had ever suggested this before. “Because of the staring spells – lots of them. Also because most of these kids I see, like Peter, have abnormal EEG findings that need and respond to treatment. And treatment means improvement.” Then he took a breath, exhaled, and said, “but here’s what really concerns me.”
As my flush spread to the point I could have fried eggs on my face, I looked over to see Pat so slumped into his chair that he looked like he could have faded right into the fabric. How could there possibly be anything worse that what we’d just been told? “What really concerns me,” Dr. Federici continued, “are his dysregulated thought patterns – Peter shows little to no grasp on reality. He doesn’t seem to know what’s real and what isn’t. And he’s almost 5. He should know, at least somewhat.” Then he gave a few specific examples. Honestly I think I’ve blocked them out because try as I may I can’t remember any. One phrase from the written report that followed, however, remains etched forever in my brain: that Peter displays “pseudo-psychotic logic patterns.” Holy Mackerel.
“But couldn’t that just be a developmental thing?” Pat pleaded. After all, Dr. Federici also had told us only a few minutes earlier that despite our son’s low average IQ, he was functioning significantly below his potential. His adaptive IQ, meaning how he was using his intelligence to interact and problem solve in the real world environment, was in the high 50s, which put him squarely in the retarded range.
“No. Significant difference between straight IQ and adaptive IQ always indicates brain damage – which is what we’re dealing with here – Peter has FAS. Maybe heavy metal exposure too. You’re right in that he’s functioning like a much younger child, but my concern about his thought patterns, well, that’s a whole different thing. You’re going to need to keep an eye on that. Keep a journal.” And then he gave us a list of behaviors to watch out for and write down.
Four or five months after our visit to Virginia, I almost hit a deer on the way home one day, with both kids in the car. A little shaken, I pulled over to settle my nerves. “Peter say go button,” he offered. “Make car zoom on air. Flap Flap.” He was referring to something recently we’d watched on Lilo and Stitch, a kids cartoon. He thought I could press a button and make the car hop and fly right over the deer, literally. When I tried explaining, for the zillionth time, how cartoons aren’t real, that lots of things happen in them that can’t happen in real life, he began to tantrum. “Peter fly car. Peter fly car. Mama don’t know. Peter fly car!” So into the journal it went.
By the time we were through with our post-evaluation debriefing, Pat and I were wobbly and on the verge of hallucinating ourselves. In addition to learning our son was autistic, had FAS, possible seizures, and psychotic tendencies, we also learned that he suffered from ADHD, a mood disorder (probably bipolar-type), severe Post-Traumatic Stress Disorder (PTSD), sensory integration dysfunction, severe Attachment Disorder, and a host of learning disabilities across all domains.
When Pat and I lay in our separate hotel rooms that night, thinking our separate thoughts but occasionally emailing each other, we realized our reaction to the day was basically the same, and went something like this: Oh my God! Now what do we do? Are our lives over? Should we dump the kids with family members and disappear into the Alaskan Wilderness? But as our panics waxed and waned, we tried to remind each other that Dr. Federici had a plan that he promised would help our son and return some semblance of normalcy, or at least functionality, to our home.
The next day we arose and met downstairs for breakfast. Sophie was in a foul mood over the thought of spending another day in Dr. Federici’s waiting room, and Peter was on the loose, medication restarted but still incredibly jumpy. I had wanted to switch rooms with Pat so that he didn’t bear the entire brunt of spending every night with Peter, but he characteristically declined the offer. He looked so tired that morning, the kind of fatigue that derives from worry more than sleep deprivation, and I fought back a rush of emotions as I watched my deflated husband shuffle toward our table. I realized right then how angry I was, at Peter, at our situation, at the fact we were spending four days with a neuropsychologist when we should have been enjoying D.C.’s glorious Cherry Blossoms. I was angry at the world, at God, for what felt like perpetual punishment, and all because we wanted a family. Because I wanted a family.
Pat’s mom sensed the change, the gravity, and as usual intervened. She suggested we finish breakfast quickly and enjoy the morning sun for a few minutes before we left for our appointment, which was day 1 of Behavior Intervention. At this suggestion, Peter began his ceremonial purging at the table but we caught it in time. In no uncertain terms Pat made clear that he would be a very unhappy boy were he to pursue this particular line of sabotage any further. Something in Pat’s eerie tone convinced Peter to stop.
Despite the early hour, the day was already hot and hazy as the D.C. area can be, even in early May. We strolled slowly around a few neatly trimmed blocks. The characteristic brick buildings, with their blooming window boxes and glossy black doors, reminded me how much I enjoy the greater D.C. area. Our leisurely pace felt inconsonant against the hurried gait of business people rushing to catch their trains. I’m sure most, if they even paused to notice, thought us tourists. But tourists we weren’t.
I had the same feeling that morning watching the throngs of people passing that I had in the airport the morning my father died. The news we had received only the day before in Dr. Federici’s office had turned my world upside down, completely, and was as difficult to process and accept as the news of a death in the family. I was envious of these oblivious people, who had ordinary thoughts on their minds, and who neither knew nor cared that our lives were now changed, forever. Theirs was just another day, indistinguishable in all likelihood, from a thousand others. This day for us would be forever frozen in time. Our son was damaged, seriously and permanently. There was no turning back the clock of our lives. We’d have to find a way to move forward. I hoped Dr. Federici was right when he said he could show us the path.
May 9, 2010
Tags: adoption, attachment, autism, biro, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized, suzanne d'aversa
October 2, 2007. Dr. Federici, the neuropsychologist who evaluated and diagnosed Peter in May 2006, wants us to send our son to the Scar Residential Psychiatric Treatment Program in Jasper Mountain, Oregon. An enticing opening salvo on the Scar website states “Achieving Success with Impossible Children”. One fact-finding phone call and I’m convinced the people at Scar have seen children like Peter before. In fact, there are so many “Peters” in the United States, children adopted mostly from Eastern European countries who are “scarred” beyond the realm of what even extraordinary rehabilitative efforts can address, that an entire (and expensive) medical, psychosocial, and educational system has evolved to support them. Until recently, Pat and I never had considered the possible need for residential treatment, but the idea has crept into our consciousness like a slow but steady cancer. Peter at some point may well require residential treatment and if so, then it becomes a question of when, how, and whether we’ll be able to afford it. The thought of existing, indefinitely, on a rollercoaster ride would fill any normal person with dread. But imagine the rollercoaster was designed and operated by a person with frontal lobe damage, a person who can’t remember the peril he put his passengers in yesterday so is destined to repeat the same misstep today that he’ll in turn repeat tomorrow. This is life with Peter. I can cry and hug and hold and reassure until I’m more tired and drained than I ever imagined possible, and little changes. I still believe Peter is reachable in those moments, but I’ve come to realize, and begrudgingly accept, that sustained emotional growth must be measured in miniscule increments, and over long periods of time. His brain lacks storage capacity for the kind of complex, emotional learning that even newborn babies are equipped to internalize. The old behaviors return the next day, or the next hour, not because Peter is defiant or merely shedding crocodile tears, but because the moment is gone. Vanished. His mind is more permeable than Swiss cheese but much less malleable, at least when it comes to shaping healthy concepts of love, family, and respect. Sometimes I worry that we’ve missed our opportunity, if there ever was one, to leave our imprint inside the echoing, dark caverns that form the mystery of Peter’s brain. I’m not sure how residential treatment would alleviate this problem. I imagine, rather shamefully, that the mollifying aspect of a place like Scar accrues not so much to the children themselves but rather to the benefit of parents, like us, who have reached the zenith of their capacities. At some point, if ever we need to set this course in motion, we’ll have to acknowledge a painful paradigm shift: the welfare of Pat, Sophie and me may become inconsistent with and need to take precedence over the welfare of our son. Our beautiful but damaged son. The very thought of sending Peter away, even temporarily, is anathema and yet sometimes I feel myself yielding, all the same, to the slow caress of temptation.
Chapter 21: Attachment 101
One of the first things Sue made clear was that attachment work was serious, all-encompassing business. Because Peter was institutionalized from the age of 5 months until he was almost 3 ½, he was deprived of certain crucial developmental steps that permanently affect his psychological and social functioning. Children attach to a caregiver when their needs are met on a continuous and predictable basis. A baby cries when he’s wet and he gets a clean diaper. The same holds true for hunger, thirst, temperature control, tiredness and boredom. At birth, any baby will seek comfort from any person as a matter of survival but as early as two months, all normally developing babies start to discriminate, relying on familiar caretakers to meet their immediate needs and provide a sense of security.
Most of us take this cause and effect relationship for granted because someone, a mother, father, grandmother, aunt or foster parent, routinely responded to our cries and subtle signals when we were infants. Our primary caregiver’s consistent, loving, and nurturing responses provided the essential sustenance our brains required to develop normal, healthy abilities to process and cope with feelings, thoughts and complex relationships. These interactions are as essential to normal brain development as nutrition, sleep and physical safety. Children deprived of early attachments risk lasting neurological impacts that interrupt not only their abilities to relate socially and emotionally, but also their cognitive capacities.
During WWII, babies and young children were sent away in droves from London to avoid the bombings. When they returned, sometimes years later, parents were shocked to discover their formerly happy, well-adjusted youngsters had regressed, both socially and intellectually. The disruptions in attachments were responsible. In the 1960s, researchers studied a group of babies and toddlers ranging in age from 7 to 36 months who were moved from an orphanage to an institution for retarded adults because of overcrowded conditions. The retarded people cared for, played with and loved the youngsters on a consistent and regular basis. When these same children were returned to the orphanage several months later, their IQs had improved 27.5 points on average. The children who remained in the orphanage during the trial period however, continued to lose IQ points.
There are plenty of other studies as well. One of the most heart wrenching took place by a researcher named Harry Harlow from the late 1950s through the early 1960s. Taking day-old monkeys away from their mothers, he put them in separate cages where they could see other monkeys but had no physical contact. He then placed these monkeys in a room with man-made “mother” dolls. One was made of wire but offered milk through a bottle secured between the slats. The other was furry and warm, but offered no nourishment. The newborn monkeys without fail chose the security of the “living” doll over the nourishment offered by the wire doll. The monkeys permitted to receive comfort from the warm, furry doll, though feeding occurred elsewhere and antiseptically, fared far better than their counterparts, in terms of both cognitive and psychosocial development. Those monkeys exposed only to the wire doll and who had no physical contact with other monkeys became highly disturbed and incapable of rehabilitation. Though controversial for a number of reasons, including the ethics of animal research, these studies were responsible in part for the birth of the foster care system and the demise of orphanages throughout the United States, Canada, and Western Europe. It seems the profound damage in these monkeys caused by the lack of physical touch and maternal bond simply could not be ignored.
This was weighty stuff to consider in a cozy office in upstate New York as we watched our disorganized, hyperactive child bounce from corner to corner making quick work of destroying the room. I hated to think our son, and maybe even to some extent Sophie, had been treated like one of those horribly deprived monkeys in the black and white films.
“Peter,” Sue said. “Come here.” He looked up from whatever he was pulling apart and obediently walked over. “Now look at me.” He wouldn’t. With eyes diverted toward his shoes, he simply smiled and grunted as she attempted to grab him lightly by the wrist. Once he shook free, he quickly returned to his corner and his purposeless activity.
I found Peter’s reaction to Sue very curious because usually when he met someone new he happily ran to them, often plopping himself backwards into their laps. He would kiss and hug and say “Hi, I Peter” to countless strangers’ delight. In fact, he was much more social and affectionate to people he didn’t know, or at least didn’t know well, then he ever was with us. But with Sue, it was as though he sensed something different about her. His body language was pensive, his eyes wary. He seemed to understand, somehow, that this benign looking woman knew what he was all about. Pat felt the same way. I realize we were assigning a lot of credit to a very damaged, trouble little boy, but it’s the feeling we had all the same.
I remember watching with fascination as Sue attentively followed our son’s every odd move, his back to her almost the entire time. After a few minutes she pulled out a bin of Lincoln Logs and asked whether he would help build a house. “Peter no build. No thank you,” he mumbled, returning to the puppet he was manhandling. Sophie, of course, immediately dropped what she was doing and joined the activity. When Sue finally coaxed him into joining them, Pat and I realized he had no idea how to follow her lead. She’d put one piece down, show him where the next went, and then ask him to follow suit. But he wouldn’t. Or couldn’t. At the time we could never be sure, it’s a paradox with which we still struggle today. He didn’t know how to interact with her, or Sophie, and he certainly didn’t know how to play – at all. Left to his own devices he began throwing one Lincoln Log at a time into the air, watching with awe and horror as each came crashing back toward the floor.
He repeated the pattern over and over as Sue mostly ignored the behavior and spoke directly to Pat and me. She didn’t seem to mind that Peter was fixated on throwing toys into the ceiling, though she did at one point redirect him toward the softer stuffed animals. “This is what you need to do,” she said. “You have to start from scratch. I’ve seen this over and over with internationally adopted kids. He doesn’t know how to play, think, organize or take direction. He’s confused and scared and completely inside himself. He’s missing a lot. He doesn’t trust. It’s not your fault but you’re the ones who’ve got to deal with it.”
She sent us home that first week with instructions to nurture and treat Peter like a baby. The idea was that he needed to experience the developmental stages he missed so that his brain might make new connections and fill in the gaps. I was to cradle him several times a day, rock him before bed, sing lullabies, devise tricks to engage eye contact, even give him warm milk with a bottle while I held him in my arms. We were never to look him directly in the eye when we were correcting his behavior or if we lost our cool; eye contact from this point forward was reserved solely for bonding and making up for three years of lost parenting.
We were also instructed not to let him jump into other people’s arms or otherwise monopolize their attention. “You just need to explain ahead of time,” Sue said. “Or when it happens, just politely remove him and tell the person that hugs and snuggles are for parents only right now.” Easier said than done, certainly. Some people understood but others would look at us like we had Medusa heads as we bent down and removed our soon to be screaming son from the joyful contentment of their laps.
But other than committing social suicide in public places near and far, the approach seemed to be working, at least somewhat. If Peter could receive physical comfort only from us, then he would have no choice but to allow us to meet his needs, both physical and emotional. We played Peek-a-Boo (still Koo-Koo in our house) to encourage eye contact. After dinner we sang and softly drummed our hands on the table to a song we dubbed Abu De Abu Da, which was something of a rhythmic chant. Peter couldn’t sing, he can’t to this day, because he can’t process the words and the music at the same time. We didn’t know that then, not specifically, but we did realize he garbled the words and sounds of the simplest children’s songs but was able, with practice, to manage the four sounds in our LoBrutto after dinner mantra.
In the ensuing weeks and months, I dutifully drove Peter the 60 miles to Albany and back once a week to see Sue. Sometimes I took Sophie, occasionally we went as a family, but mostly Pat took a half day off each week from his business to stay home with Sophie. During our sessions, Sue would interact with Peter, trying to engage him in purposeful play while she and I rehashed the previous week’s progress, or in some instances, regression. I found her incredibly helpful and understanding when it came to expressing my worries and frustrations, as well as celebrating our small but significant strides forward. She understood what Pat and I were going through in a way I hadn’t previously experienced, and it was tremendously comforting to let my pent-up concerns pour out without fear of judgment.
By this point into our adoption journey, I was having thoughts not unlike the single mother from Tennessee who’s been in the news lately. Although I can’t pretend to know the facts, the media reported the woman was so distraught over her 7-year-old Russian adopted son, who had been “home” only 6 months, that she sent him on a one-way United flight back to Russia. He had nothing with him other than his book bag and a note directing a prearranged driver to take him back to his orphanage. I’m neither qualified nor inclined to pass judgment on this woman, but I will say I can understand the sheer terror and frustration that might lead to such an ill-conceived solution. By six months into our adoption journey, I was a deer in the headlights, working on autopilot, doing my best to survive Peter’s inexplicable behaviors one day at time. But unlike the Tennessee woman, at least I had an incredibly loving, supportive, though equally perplexed partner on whose shoulder I could lean. We also, within the year, had Sue.
After our very first meeting she suggested it would take about 6 to 9 months of intensive work both at home and in her office for Peter to become more securely attached to us, and for us to notice measurable change. A lofty goal, for sure, and one I dreamed longingly about as the endless days continued. During the times Sophie was with us, she’d leap around Sue’s office like a Kangaroo on speed, often refusing to take direction or calm down. I could see the unspoken worry in Sue’s eyes, but because she always returned to me once her blitzes had run their course, I felt we were okay, that we were bonded. In short, that Sophie’s problems were fixable. It turns out I was a little naïve in this regard too, but at least not entirely off the mark. But I couldn’t say the same about Peter, not even remotely. I believed in the work Sue was doing with our son, and maybe more significantly, I needed to believe in it, but secretly I struggled to see an end in sight.
“That’s okay,” Sue would laugh, whenever I confessed my reservations, usually when Peter was taking one of his lengthy bathroom breaks. “As long as you keep doing what we talk about.” So every week I would leave recharged, ready to give the bottle another try, which never did work, and stay committed to practicing our other assignments, which did seem to produce some improvement. For whatever reason, Peter could not tolerate either Pat or me trying to give him milk (including chocolate milk) from a bottle. He would squirm and giggle maniacally. Any milk that made it into his mouth would come out in a bubbling, spurting mess that would then invoke another wave of hysterical laughter. He simply couldn’t handle physical contact, and certainly not the intimacy.
One thing I realized early on though, was that Peter would look at me using the rearview mirror from his car seat. At first I thought it merely a coincidence, but then I started noticing how he’d stare at me while in the car more and more. It was as though the mirror was a go-between, a metallic medium that made the interaction for Peter somehow less intense. When I shared this theory with Sue she was thrilled, and not particularly surprised. She said it wasn’t that different from sending an email to someone you’re afraid or unwilling to confront face to face. So this was progress, I learned, though of a variety I hadn’t expected. Just one more reminder that improvement for a child like Peter must be measured in miniscule, sometimes barely perceptible increments that nonetheless add up, slowly but surely, over the course of a month, a year, or in some cases, a lifetime.
But in other ways he wasn’t improving, at all. Peter still smeared feces and sometimes hurt himself. The worst injury he ever inflicted was the day before Sophie and Peter’s joint birthday party, which was our first as a family. Sophie turned 3 on July 22, 2005 and Peter turned 4 two weeks later, on August 4th. He had been screaming and stamping his feet about something, and Pat and I had sent him to his room. When he began swinging the door open and closed with such ferocity that we were afraid he would hurt himself or pull the door from its hinges, Pat closed it, which sent Peter into some kind of frenzy. As best we can tell, he leapt from the bed directly at the door, the left side of his face making impact with the doorknob.
Pat was still upstairs when the screams began and by the time I turned the corner to peer up the stairs to the landing, tears were streaming down my gentle husband’s face. “I did it to him,” he sobbed. “It’s my fault. I closed the door. This is no good. I just can’t do this. I can’t,” he continued.
The blood pooling beneath Peter’s skin and along his cheekbone and brow formed an exact replica of the doorknob, including the push lock. By morning, his face looked monstrous. Pat had deep circles etched beneath his eyes from sorrow and regret on a day that should have been filled with happiness and celebration. It was no fun explaining to the other parents what happened as they watched Peter flit from present to present with obsessive, bug-eyed interest. I remember some of the other parents nervously laughing, doing their best to reassure me that all kids do that kind of thing on occasion. I couldn’t help but wonder whether they were referring to the doorknob impression on my son’s face or his compulsive interest in the birthday presents to the exclusion of everything else that was occurring around him.
Although another incident that severe never reoccurred, he was still banging his head, throwing his body against doors and walls, and occasionally hitting himself several months into our therapy. We also weren’t making much headway with the attachment parenting except for the small gains regarding eye contact. Peter routinely cringed whenever I tried to hold him. He became so stiff that his joints locked. My feeble attempts at reenacting his lost infancy felt more like snuggling with a tire iron than a child. But I kept trying. And so did Pat.
During our rare times alone we would discuss how things were progressing with Peter, sometimes fooling ourselves, sometimes not. By then I had taken a post as a Visiting Professor at Bard College, teaching environmental law and policy to graduate and law students who were mostly in their early to mid twenties. It was an exciting and terribly welcome change to be able to channel at least a portion of my nervous “Peter” energy into an intellectually stimulating pursuit. The only problem, which any first year teacher knows, is that my course load was more time-consuming than I anticipated. I was a part-time faculty member, earning a part-time salary, but easily working 50 or more hours per week. Each 2½ hour lecture had to be prepared from scratch, using a textbook and other materials with which I was wholly unfamiliar. I also found myself often covering for our program’s director, who is a dear and important person in my life, but whose substantial expertise in international environmental policy was far beyond the realm of my more modest federal environmental law background.
So in short, I was busy, very busy. I often graded papers and worked on upcoming lectures starting at 7 pm when we put the children to bed and continuing until 1 or 2 am. I did this so that I was able to spend every minute with our children that they weren’t in preschool. This was especially important for Peter, but Sophie needed me too. Pat and I didn’t travel half way around the world on two separate occasions to turn our children over to someone else. It just wasn’t going to happen. My only concession, which was unavoidable, was that on the two afternoons a week that I was physically teaching, the kids stayed for both the morning and afternoon preschool sessions.
But despite my fatigue and the welcome distraction that teaching provided, I was never able to shake the feeling that our situation with Peter wasn’t really improving. He was still unengaged with us, he still didn’t interact with other children, and he could alternate between screaming over the simplest injury, such as a slightly torn fingernail, to not reacting at all upon being stung by a wasp. He laughed when others hurt themselves, and sat down like a wooden puppet, refusing to move, whenever he became irritated or angry. And most alarmingly of all, he began directing more and more of his hostility toward Sophie.
After a while Sue began suggesting that we double our sessions, which we did. She and I would do our best to engage Peter in meaningful, organized play, but to little avail. She also had me read to him in her office, cuddled on a couch and wrapped cozily in a blanket. They were always books that addressed attachment, whether directly or indirectly, such as Llama Llama Red Pajama or Twitchy. Although Peter still struggles to read, he’s always been drawn to books, a characteristic very much in his favor and one that certainly endears him to his book-loving Mom and Dad. At the time, books were one of the few and easy inroads into our son’s troubled and heavily cloaked heart.
But not all our sessions were about books, snuggling and play. Often Peter was very angry in Sue’s office, he didn’t like what she was doing and let us know loud and clear. He would throw toys and stuffed animals across the room and dig his nails into the walls. Sometimes when I was trying to cradle or otherwise physically comfort him, he’d bite me.
When he wouldn’t calm down in her office after one or two verbal warnings, Sue made him practice “strong sitting”, a technique we still use with Peter and on occasion, even Sophie. It entails having a child sit cross-legged (something Peter physically cannot do so we relax this requirement) with hands on lap, back straight and head held high. The psychological point of the exercise is to allow the child to regain the strength and self-control that was obviously lost as a result of the outburst. “You need to get strong again,” Sue would whisper softly but with authority. Peter would face a wall and practice his strong sitting until she thought he had regained his composure enough to rejoin us. In the meantime, she and I would talk as though he weren’t present.
Although Sue hinted about the possibility that Peter was alcohol-exposed, and definitely thought he exhibited attachment problems, she never addressed the concern head-on. But she did acknowledge he had trouble with impulse control, distractibility, organization, problem-solving, and self-regulation, all telltale signs of executive dysfunction. Not a good thing. The executive function center of the brain, which is located in the frontal lobe, is responsible for working memory, cognitive flexibility, abstract thinking, rule acquisition, initiating appropriate actions (and inhibiting inappropriate actions), and selecting relevant sensory information. In short, although Sue was a social worker and not a diagnostician, she sensed that for Peter, the wiring in the area of the brain that makes us uniquely human was riddled with short-circuits, missing links, and faulty pathways.
“He can’t organize his play,” she commented one afternoon. “He moves around so quickly from one thing to the next. And he never chooses people to play with. Only things. He won’t let me in. It’s as though we’re not even in the room with him.” I hadn’t heard this level of frustration in the six or so months we’d been coming to see her so my ears, as well as my heartbeat, naturally perked up. “Mary,” she paused, her hands dropping heavily in her lap. “I would have hoped to have made more progress by now.”
So there it was. Pat and I weren’t the only ones at our wit’s ends. The “Adoption Whisperer” was frustrated too. “I’m thinking you and Pat should consider a short-term round of medication, Sue offered. “Just to see whether there’s something that might help lower his resistance a bit.” I hadn’t thought of medication, Peter was only 4, and the very idea terrified me. Pat didn’t receive the suggestion any better than I; in fact, he was even more opposed to the idea.
But then another month or two elapsed, the conversations continued, and Peter’s behavior and development was at best stagnating and at worst deteriorating, despite our constant efforts and our weekly double sessions with Sue. Pat and I were also becoming more and more exhausted. Any unsuspecting babysitters we cajoled into our home fled so quickly upon our return, puzzlement and fear evident in their eyes, that their otherwise bouncy ponytails remained suspended by the sheer loft created by their hasty escapes. The only young woman whoever came back more than once was the 20-year old daughter of our friend and house cleaner. She worked as an aide at the Children’s Annex, an area school for autistic children, so we thought she might have the training and stamina to handle our kids, especially Peter. But we later found out she would call her mom several times during the three hours we were out for tips, survival advice, and general encouragement. We couldn’t keep doing this to either our friend or her daughter, especially knowing they were basically having to conduct a sort of spiritual séance over the telephone wires just to make it through the evening.
Finally the proverbial shit hit the fan. When Pat went out of state for one of his writer’s conferences later that winter, which are absolutely necessary to maintain business and attract new clients, the director of my teaching program also happened to leave for China at the same time. It was a double whammy that left me with twice the teaching responsibilities and no help at home. Although I’m not the type to fall apart when my husband leaves town, I have to say this particular trip was a cathartic experience. Peter never does well with change, and certainly didn’t then, but what happened over those three or four days cemented my decision to medicate our son. The strangest part is that I can’t even tease from my mind a single event. I do recall, however, that I endured a constant onslaught of unrelenting attacks, tantrums, and waves of nonsensical laughter that caused chills to run up and down my arms.
As I came gradually upon the little love notes that Pat leaves me when he travels – an “I love you” in the medicine cabinet, or an “I can’t wait to be back in our bed” on my nightstand – I tried to survive being bitten, spit on, kicked, hissed at, and vomited upon by Peter. Sophie was so overwhelmed by his behavior, as well as the anxiety, no doubt, oozing from my pores, that she began putting forks in her eyes and jamming crayons in her ears. Despite my efforts otherwise, I found myself sobbing on the phone almost every time Pat called, which I knew was a horrible thing to do to him. And I don’t know what’s worse: being in the middle of a blitz or knowing the one you love is fighting for her life and there’s nothing you can do.
We were both miserable, and we knew it. As hard as it is to admit, we decided then and there to medicate Peter, if not for him, then for us. Within two weeks we obtained a prescription of the anti-psychotic drug Risperdal, prescribed by a psychiatric nurse practitioner with whom Sue worked. That night we gave him the tiny terra cotta colored pill and kissed both our children goodnight. We had been warned that the drug would need to be in his system for a few days before we could hope to notice any changes. That night Pat and I stayed up watching dopey horror movies, neither of us able to sleep. The decision had seemed so huge, and it weighed heavily on our hearts and consciences.
But at some point I obviously did fall asleep because I woke to the familiar plop of a small body at the foot of the bed. I opened my eyes expecting to see Sophie, who loved to burrow under the covers and snuggle in the morning. But instead I saw Peter, who had never, not even once, come into our room to say good morning or seek comfort because of a nightmare or thunderstorm. “I love you, Mama!” he announced, his eyes shy, his voice monotone, and the smallest of smiles creeping across his face.
“I love you too,” I cried. Within seconds the tears gushed unchecked down my face and neck and onto my silly, flannel nightgown. I opened my arms to receive him but he couldn’t move any closer, and that was okay. “I love you, too, my darling Peter.” I could barely choke out the words. I had waited more than a year to hear that phrase from my son and it was the most melodic, beautiful, and divine declaration I’m likely ever to have the privilege to hear.
April 8, 2010
Tags: adoption, attachment, autism, biro, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized, sisters, suzanne d'aversa
September 29, 2007. Sophie, Pat and I are at the pumpkin patch, tripping over pumpkins littered across a wide field and chasing each other through the deep orange obstacle course. Sophie picks little pumpkins for Grandma, Lindy, and herself and one big one to carve a few days before Halloween. Pat and I choose a large, skinny one for Peter, who is home in his room, with Lindy keeping watch. We made an emergency call an hour earlier and luckily she was able to come over and bring relief. I had to leave, get away from Peter for a while, but I had no desire to leave Pat and Sophie behind. In a sickening moment of deja vu, I discovered Peter threw away my new eyeglasses, my engagement ring, my favorite watch, an engraved bracelet Pat gave me as an anniversary present, and a bracelet given to me by my sister. Like Sophie’s birthday presents, we had come to the conclusion there was no other conclusion that didn’t involve Peter, but we searched and searched for the missing jewelry nonetheless. Peter participated in the hunt. An opportunity arose to question him about it and he finally confessed. He admitted taking my jewelry, which was on top of the vanity, and placing it at the bottom of the wicker trashcan in our bedroom. My most cherished possessions went out with Monday’s garbage. The day until then had been going so well. The kids had a soccer game in the morning, we went by the new house to check on progress, had leftover Chinese for lunch, made silly, homemade Halloween decorations, and were planning an outing to the pumpkin patch later in the afternoon. One of the happiest days I thought we’d had in a while. But now I’m numb and dazed, doing my best to feign fun for Sophie’s sake. She’s nervous but thrilled to have us alone. I stare at the endless vista of pumpkins and wonder whether Peter will be with us for this annual outing next year. I should be crying, I feel like crying, but the tears don’t come. Instead, I chase Sophie and let her chase me. I take pictures of Pat and Sophie as they zig and zag through the corn maze and scramble into the hay tunnel. Despite the sorrow burrowing inside, I’m having fun. As a family of three we’re happy. As a family of four we sometimes aren’t. Surely that should be enough to make me cry.
Chapter 20: Widening our Circle
One sunny morning in May, my sister walked in to find the kids and I playing on the floor. All three of us looked up when the door opened but only my face registered shock and surprise. As much as I love the idea of Patty being able to drop in whenever she liked, it’s an impossible wish because she lives in Atlanta. But there she was, broadly smiling in her quiet way, bracing for the noise and ruckus that her arrival was about to cause. Surprise!
She had come for my 40th birthday, which was only two days away. Pat’s mother was turning 80 and with my encouragement, he and his brother had flown to West Palm Beach the night before to surprise her. I knew I wouldn’t feel alone on my birthday because I had Sophie and Peter. Despite growing concern for our son, I still reveled daily in the bounty of our good fortunes and felt content and fulfilled with our children by my side. But it seems Pat and Patty had conspired to make sure the kids and I had company for the weekend. I couldn’t have been more thrilled.
“What should we do?” Patty asked, once the hoopla settled. “I mean, after we go to Albany . . .” So Pat had told her. Thank goodness. Within the hour I needed to be in the car, heading to Albany for our appointment with a pediatric infectious disease specialist named Dr. Martha Lepow. Peter’s pediatrician had called three days ago to inform us that an x-ray taken of his chest showed a lesion on his lung, an indication of active tuberculosis that could not be ignored. His preschool was not thrilled though the director took the news fairly well. Although we agreed Peter should stay home, she would wait until she heard from us to inform the other parents. We had called Dr. Aronson about the x-ray findings and she urged us to stay calm and wait for the specialist’s opinion. “In all my years of practice,” she said, “I’ve never seen an active case of TB in any of my kids.”
When Dr. Lepow walked in the examining room, a short, commanding woman with a gray pixie and tortoise-rimmed glasses, she took one look at Peter and proclaimed that he didn’t have TB. “So you’ve looked at the x-ray?” I asked. “No, not yet,” she admitted. “I can tell just by looking at him. He’s got other problems – we’ll talk about those, but let’s get this TB thing over with.”
Sure enough, she examined the films and confirmed that Peter didn’t have active TB. The “lesion” on the x-ray was his arm. I was so relieved I couldn’t even get angry with the idiot radiologist who read the x-ray locally. But even I could pick out the outline of the tiny elbow once Dr. Lepow showed my sister and me the film. Clearly he had moved during the procedure. I’m sure Peter wasn’t the first 3-year old to squirm during an x-ray either. Still, he was okay, and that’s what mattered. There would be no mass hysteria at the preschool and we wouldn’t have to embark on some awful, long ordeal that may or may not have restored his health.
It’s amazing how much a word like tuberculosis can hang over your head, clouding your thoughts and feeding your very worst fears. Our perplexing son was physically healthy, at least relatively, and I felt free to enjoy Patty’s company and my impending 40th birthday with an unburdened mind. Like other doctors who had met our son, Dr. Lepow was worried about what she saw, and perhaps more to the point, what she didn’t see, but I naively downplayed her observations. After all, he didn’t have TB, and wasn’t that the take home message?
But she did point out a few things that I dutifully committed to memory. His range of motion was abnormal, for instance, there were prominent and dark circles under his eyes, and despite his being much sturdier than Sophie, Dr. Lepow said he needed to gain weight. She suggested we supplement his diet with Pediasure and keep a close eye on his growth. If his height didn’t make the chart in three months, she suggested we take him to a pediatric endocrinologist.
“He’s not catching up like you’d expect,” she said. “It doesn’t mean he won’t, he may just need a jumpstart. His gait’s off too – this little fellow’s got low muscle tone.”
Patty and I discussed the doctor’s concerns on the way home and by the time we’d driven the 60 miles back to Marbletown we agreed that Peter’s odd behaviors were of greater concern than his unimpressive growth rate. My sister hadn’t seen Peter since January and she felt his strange affect and behaviors were every bit as peculiar as they’d been last winter and maybe even more pronounced. She also gently pointed out that Sophie, who was a year younger, was speaking much better than Peter. I assured her that I’d speak with Pat when he returned from Florida about getting some assessments done.
Thanks to the eradication of the TB scare, the rest of the weekend was remarkable in that it was unremarkable. That is, until Sunday rolled around, which was my birthday. I don’t remember what we did that morning but when we came back home after lunch, Patty insisted we go shopping even though her plane was leaving later that afternoon. She said she wanted to see the new outdoor adventure store at the mall, which I did think was an unusual request (my sister’s not really a mall person), but I was happy to oblige. I was just glad she was there. So we left again and walked around the big retail space, complete with camping equipment, kayaks, fishing poles and hunting gear. Stuffed bear, deer and bobcat heads hung from the walls, and we quickly made for the exit sign once Peter noticed the taxidermy displays and began screaming inconsolably. On the way home we stopped for milkshakes at Stewarts and laughed at the sight of Peter and Sophie trying in vain to suck the thick contents through their flimsy straws and into their mouths.
By the time we got home the kids’ clothes were covered in milkshake and the four of us were hot and sticky and smelled like melted ice cream. When I walked in the door I was instantly bombarded with SURPRISE and the sight of Pat’s smiling face. He and my sister had fooled me, and fooled me well. Our living room was stuffed with family and friends, many of whom had driven from the city to celebrate. I had no idea how Pat arranged to come back from Florida early or how he managed to throw the party together in the short time we’d been away from the house that day. But somehow he managed it and so I kissed him, my face turning flush as the guests cheered.
It would have been a great party, too. As it turned out though, I never even got the chance to say hello to anyone. In fact, I was still standing in the doorway when Sophie came barreling around the kitchen island, tripped over a bar stool and suddenly became airborne. I saw the coming catastrophe clearly in the split second it took before she landed face first onto the corner of the island and then bounced toward the floor where Scout, our child-loathing dog, stood waiting. I lunged to catch her but it was too late. Sophie landed on top of Scout and the only thing I remember after that was a horrible yelping, screaming noise. I pulled Sophie one-armed from the snarling mayhem and held her to my chest as I quickly dashed around the corner into the mudroom, which was unoccupied. I held her tightly for a moment and then gently lifted her quivering chin to assess the damage. I could hear Pat gasp “Oh my God!” behind me. Sophie’s face and my shirt were covered in blood. “Get a towel,” I yelled. My voice shook with fear and my body began trembling. “I’ll be in the car.”
Pat drove like Robin Williams on speed to the hospital while I sat in the back seat and cradled Sophie, whose screams by then had dwindled to the occasional muffled sob. By the time we got to the Emergency Room, she’d stopped crying altogether. The gash responsible for the copious outpouring of blood was less than a half-inch long and ran perpendicular to the ride side of her upper lip. We tried to keep her still in the waiting room but it was nearly impossible. Holding the towel to her face, she played peek-a-boo with a young man who was also waiting to be seen. “Koo-Koo,” she smiled, wincing in pain.
The only blessing that came out of the whole ordeal was that the emergency room doctors adamantly confirmed that Sophie’s injury was not a result of a dog bite. Scout caught her lip with her toenail, which is not good, but the news was a relief because it meant we didn’t have to consider finding another home for our beloved old dog. If she didn’t bite Sophie in that kind of situation we felt confident she never would. There was no plastic surgeon available but after waiting over two hours, an ENT finally showed up to stitch the wound. The ER doctors felt an ENT was the next best thing to a plastic surgeon because they do so much facial work. Because of Sophie’s age, they had to sedate her, which was no fun, but I was allowed to hold her the entire time, even while the surgeon sewed her bruised and broken lip.
As we were leaving the ER, a nurse approached us with a wonderful ink drawing the young man in the waiting room drew for Sophie. He too was obviously struck by our daughter’s amazing resiliency and charisma. By the time we got home the party was over. Pat’s cousins, who stayed to watch Peter, were cleaning up.
My sister’s plane had left two hours earlier. The cake was eaten, the food and drinks were decimated, and the couch was littered with unopened presents and cards. Pat had periodically called home to check on Peter and our guests, so everyone knew that despite the horrific amount of blood, Sophie’s injuries were minor. It seems our guests were so relieved that Sophie was not seriously hurt that they decided to celebrate in earnest. We later heard that Pat threw the best party he never attended.
Because Sophie still clung to many of her orphanage ways, she insisted on wobbling up the stairs from the garage into the house on her own drunken volition. Her lip was twice the size of Tammy Faye Baker’s and the right side of her face and eye, where she bounced off the corner of the kitchen island, was grotesquely swollen and purple. “Where the peoples?” she asked, in the most pitifully small voice. “I want cake.”
We quickly explained that cake would have to wait and shuffled her upstairs, where I took off her blood-soaked clothes and changed her into pajamas. She was asleep midway through the process and I fought back tears as I tucked her in and lightly kissed what I prayed was only her temporarily misshapen face. After changing my own clothes and throwing the entire bloody pile in the garbage, I sat on the floor next to Sophie’s bed and watched her sleep. The rhythmic sound of her breathing beckoned me toward a calmer mindset and after a while, I too relaxed.
While Sophie healed over the course of the next week, I forgot all about the Big 4-Oh. After all, any trauma I might have been willing to entertain regarding my 40th birthday had been snuffed out instantly in the wake of our daughter’s accident. However, once it became clear that Sophie would not be permanently disfigured, and that we wouldn’t even need a plastic surgeon to improve the scar, our worries slowly migrated back to our son and his unshakeable troubling traits.
As we grew to understand Sophie’s moods, including some new twists because she was cranky and sore in a way we hadn’t yet experienced, the continuing sense of not knowing our son was horribly disturbing and more than just a little eerie. Pat and I could ramble on about Sophie, her likes and dislikes, her funny and perplexing habits – as amiably and confidently as any other set of parents. But Peter was an enigma, and as his behaviors began escalating, he seemed more like an explosive device waiting for the last tick-tock before detonation than a cuddly toddler.
The floodgates opened just as we began taking some proactive steps, making appointments for various evaluations despite our pediatrician urging us to wait. Peter began rubbing feces on himself and his belongs again, peeing everywhere and on everything, ripping wallpaper, raging, hurting Sophie, biting, spitting, refusing to eat, vomiting at the table, bolting from us in crowded places, and destroying his toys. It was as though he had been in a trance and all of a sudden he went into some frenzied overdrive. Looking back, it seems one minute we had an oddly robotic child who was nonetheless generally compliant and then we blinked and found ourselves staring at a feral child who could neither be consoled nor contained.
As we waited for the appointment dates to arrive, and the written reports of the evaluations that followed, Pat and I did our best to support each other. Leaving the kids with a babysitter simply was not an option. How do we explain to a teenage girl or grandmotherly woman about Peter’s behaviors? That she needs to wrap duct tape snugly around our son’s diaper at bedtime so that he doesn’t pull it off and cover himself and his bedroom with unspeakable mess? Or to not pay any attention if he vomits his meal at the dinner table – just clean it up and offer him another plate of food! I just could never play out these conversations in my mind. So we stayed home, always.
But at least we had our evenings, thanks to our rigidly imposed 7:00 pm bedtime for all those under the age of 30, and on weekends we’d take the kids hiking, do our best to wear them out, and then take a long, leisurely drive afterward. On the days when all went according to plan, the kids would nod off from exhaustion and boredom and Pat and I would escape into our own private revelry as we cruised the back roads in search of a yet-undiscovered treasure. Every once in a while we’d come upon a fantastic barn or homemade road sign – even an interestingly posed cow, and I’d swat at Pat’s arm to pull over so I could take a picture.
Also, our virtually symbiotic ability to read each other’s signals, to jump to the rescue with a silly joke or a supportive squeeze or maybe even something as small as knowing smile, is what keeps us afloat, as parents, partners and individuals. I suppose we’ve always had this kind of relationship, we certainly had our share of hardship as a couple before adopting the kids, but combating and coping with Peter’s problems made us consciously aware of it. I’m not sure I possess the strength or resolve to parent our son without Pat by my side, I shudder to think what’d it be like, and so I pray each night that our health remains intact for at least a year or two beyond Peter’s undoubtedly prolonged adolescence. We are one of the few couples I know where adversities, sometimes the size of land mines, have failed to corrode the seams of our marriage. I truly look forward to that time when Pat and I can go out to dinner again, maybe even catch a late night movie, or take an exotic trip. So what if he’s 81 and I’m 64?
I was engaged in just this sort of day-dream, renting a house for a year in Ireland, to be exact, when Pat walked in with the mail, which turned out to contain the key to unlocking Peter’s access to special education and preschool intervention services. Peter’s speech and language evaluation indicated significant delays in both receptive and expressive language skills, as well as profound difficulty processing auditory information. In light of his normal hearing test, these results more than supported the need for preschool-based speech/language intervention. The occupational therapy evaluation was no different. Peter was significantly delayed in both gross and fine motor skills and demonstrated great difficulty with motor planning and oral manipulation.
Within a few weeks the county had arranged for therapists to work with Peter twice a week at home. Having professionals in our living room, their bags of therapy toys in tow, felt wonderfully productive. Peter’s new therapists were confident and knowledgeable about child development and their respective disciplines. Within no time, they had him blowing bubbles, crawling through nylon tunnels, stringing beads, working on single step directions, pronouncing the letters of the alphabet and matching pictures to their corresponding words. We were assigned a case manager who’s job was to oversee Peter’s therapies, assess his overall improvement, and make any changes or recommendations to services based upon observed progress or newly identified need.
Overall, we couldn’t have been more pleased. After months of waiting and hoping for Peter to turn the corner, it felt good to be taking action. In my heart I’d always known something was askew with Peter and the escalating turmoil our family endured over the last several weeks solidified my resolve to seek help. When I confessed to our new case manager, a can-do woman with curly red hair who was also an adoptive mother, that I thought we were struggling with attachment issues, she immediately wrote down the name and number of Sue D’Aversa. “Contact her,” she said. “You won’t be disappointed. People up there,” she laughed warmly, “they call her the Adoption Whisperer.”
“Up there” turned out to be Albany, which is the Capitol of New York and over 60 miles from our home, but I didn’t care. After what seemed like months of Pat dragging his feet when it came to facing Peter’s problems, it was a relief to hear him agree so readily to yet another intervention. Although I’ve since lost a good deal of my naivete, there was a time when I greeted each newly identified specialist, therapist or intervention with great anticipation, as if wellbeing and normalcy for our son was only a single appointment, drive, or office door away.
So on that cool, sunny morning in June when Pat and I discussed making the appointment as we pushed the kids on the swings of their newly installed jungle gym, I felt hopeful. Sophie was thriving, growing stronger, wittier and sharper every day, Peter finally was getting help, and I was certain the social worker named Sue was about to throw Pat and me a priceless lifeline.
By the time our appointment rolled around, the children looked healthier than we ever imagined possible. They no longer had translucent-colored complexions, their skin now radiated health thanks to nutritious food and plenty of warm sunshine. Their hair had thickened up and grown shiny too, though Sophie still didn’t have enough for pigtails and had to settle instead for a Pebbles bow on the top of her head. Although Peter’s growth would not skyrocket for a few more months, Sophie was growing by leaps and bounds. By that summer she was still tiny for her age but had outgrown four sizes of clothes and just as many if not more shoe sizes.
We went together as a family the first time we drove to Albany to meet Sue, who apparently had a true gift for healing adopted children. She shared office space with other counselors on the floor and there was a large cabinet in the waiting room that Sophie soon discovered was filled with books, toys and puzzles. For whatever reason I felt the need to dress the children as though they were attending some sort of socialite tea party, and I felt a little self-conscious about this as they plunged into the heap of grubby toys in their brand new, overly dressy outfits.
Within a few minutes Sue opened her door and beckoned us inside. She introduced herself and I liked her immediately. It was clear she was a no-thrills, middle-aged woman with an open face and an interesting, hopefully insightful, perspective. I would also soon learn that she possesses a great sense of humor and loves to laugh as much as I do. Her office was arranged like a comfortable living room, with a sofa on one side and two chairs with a table on the other. Multiple toy boxes were placed against the walls and Kleenex boxes were conveniently available on every table. Either someone had bad allergies or there were a lot of tears shed in that room. Still conflicted and confused about my feelings for Peter, I hoped and prayed she had an unusually allergic clientele.
As soon as we sat down and she spent a few minutes talking to the kids, she asked us the inevitable question. “So, tell me why you’re here?” Pat and I just stared at each other, dumbfounded. We were at a loss when it came to discussing our feelings toward our son. We could barely express our complicated feelings to one another much less to a stranger we’d met only five minutes earlier. When it became clear we needed to be walked through this initial process, she instead suggested we tell her about our adoption story, how Sophie and Peter came into our lives, and what our initial impressions were of each. That we could handle, barely.
We gulped, almost in unison, as we wordlessly determined who would speak first. Our year of intensive attachment therapy had begun.
March 13, 2010
Tags: adoption, attachment, autism, Dr. Jane Aronson, fetal alcohol, international adoption, orphan, parenting, post-institutional autism
September 23, 2007. Peter wet himself for the third day in a row. Yesterday, while catching minnows at a nearby creek, he peed his pants while boring his gaze into Pat’s mother and us. It seems whenever we let negative behaviors like wetting pass without consequence, Peter interprets our inaction as weakness to be exploited. For the last two mornings we ignored the wetting on the advice of our new Red Hook pediatrician. She is a sensible, well-meaning woman, but like most doctors we encounter, lacks experience with post-institutionalized children. She can’t imagine Peter pees with purpose and so she offers a plausible explanation. “Maybe his sleep pattern has changed. It happens at this age,” she tells us. “He may be overtired and not listening to his signals.” We’re so desperate to believe one of Peter’s problems is “typical” that we take her advice and try ignoring the problem. I recall this conversation vividly as I confront Peter about his renewed interest in extramural peeing. I tell him I’m aware he’s wetting because he went without consequence the last two days. The kind doctor no doubt would reproach me for saying so, but I know my child. He scoffs and hides his face so I can’t see him relish in the moment, his smirk re-enforcing the terrible truth Pat and I have known for some time: we often are at war with our son. The Normal Frontal Lobes (us) versus The Flying Neurons (him). When pushed to speak about the reason he’s begun wetting again, he looks up and says, “I like to upset you.” “Does it ever upset you?” I ask. “No, I like it.” He walks off without looking back and crouches behind the kitchen island. I soon hear him crying. I peek over and find him sobbing with great shuttering waves of shame, knees drawn up to his chin as he rocks, repeating to himself how sorry he is, that he’ll try harder. I start crying too. “Come here,” I say, picking him up. I expect limp, dead weight but he wraps his arms tightly around me, squeezing my neck for dear life. I think he understands, for the moment, that he’s his own worst enemy. Peter can be the boy who wants carte blanche to disrupt our family at every turn as well as the boy who desperately needs and craves love. There is an epic, primal war waging inside him. The stakes are so high it dwarfs the battle he’s waging against us. If I think too much about which boy will prevail, which of our Peters will emerge to face us as his body and mind edge toward manhood, I’ll lose what’s left of my mind. And so I squeeze him back and surrender my fear in favor of this rare, connected moment.
Chapter 19: Something’s Not Right
Somewhere around the six-month mark, Pat and I realized denial was no longer a rational pursuit. By this time Peter was attending preschool three mornings a week and I was grateful for the break. It gave me the opportunity to focus on Sophie without the distraction of Peter’s increasingly more difficult presence. During this time we still clung unsteadily to the “give it time” theory, continuing to hope that Peter’s odd behaviors would eventually resolve. Clinging to this possibility made about as much sense as running a marathon with one shoe but we weren’t yet ready to face reality. It didn’t help that everyone we turned to, doctors, preschool teachers, family, and friends, urged us to practice patience. He needed time to heal, acquire language, and discover a sense of self.
Another reason we didn’t move sooner was that although his puzzling behaviors and social interactions were worrisome, they didn’t scream out for attention. The bed soiling hadn’t stopped but it hadn’t escalated either. He was acquiring language, but at a slower rate than Sophie, who was chattering happily and nonstop. Peter still only had a few dozen words but more importantly, he had a habit of stringing them together in a way that didn’t quite seem right. For instance, he called the bathtub “bath tonight” and referred to the sink as a “drink of water.” It was easy though to dismiss these language mistakes, especially since he was still transitioning from Russian to English.
His preschool teachers were happy to have him even though when pressed, they confessed that he kept to himself and wouldn’t join in with the other children. He also didn’t follow directions, even simple ones. I remember these kind-hearted women almost whispering these confessions, as though it were impolite to discuss a recently adopted child’s lack of progress. “But he’s no problem,” they’d say, grabbing my hand warmly. “And he’s cute as a button . . . those eyes!”
Then there was the sitting down behavior, a precursor to the tantrums and rages that still pepper our daily lives. Whenever Peter was upset, because he didn’t want to do something that was asked of him, like stop a preferred activity, or leave before he was ready, he’d drop to the floor. It was the strangest thing. He’d sit with his legs straight out and his hands resting rigidly in his lap, silent as the night and staring blankly ahead. And he wouldn’t budge. One of us would have to hoist him, one-armed, and carry him like an unwieldy mannequin.
These were warning signs, certainly, but except for the bed soiling, they felt manageable. Peter was a little boy who was obviously having trouble adjusting and who was withdrawn and reliant on maladaptive behaviors to express his needs and frustrations. We accepted this and tried our best to embrace the adage that patience and love were the greatest of all healers.
But then the other shoe fell off. About six months after the adoptions, Peter abruptly abandoned his passive approach to living in our house. Almost as though an alarm bell sounded inside the deepest recesses of his brain, our son awoke to the sounds of his own primal screams. His demons became loosed and consequently, our family’s course, laid from hopes, dreams, and a pinch of folly, took a turn toward a future we never expected or imagined.
One early Sunday morning when the bulbs had bloomed but the grass was still brown, Peter ran into our room and uncharacteristically jumped in bed. Despite the darkness that still blanketed the day, the house was awake from the rumbling of a springtime storm. Sophie had already beaten him to the punch and was lodged deep under the covers, hiding from both the thunder and the high-pitched howl of the wind whistling through the newly leaved trees. Peter wiggled his way between us in search of a spot where he too could disappear. Despite the children’s fear, I was grateful for the banging storm, for the intimate opportunity it offered.
Because it was still mostly dark, I didn’t notice anything unusual when Peter stretched his arm out from under the quilt. But I quickly smelled the odor. “What the . . .,” I gasped while Pat fumbled for the lamp switch. To our horror, the light revealed what we already suspected. Poop, coming from Peter. And it wasn’t a simple accident. He was covered in feces. He had taken his own waste and smeared it all over his body and pajamas and into his hair. He was completely covered in poop.
Sophie started crying as soon as she realized what happened and this caused Peter to run screaming from the room. The place on the bed where he lay was fouled and so were Sophie and I. Because Pat was unaffected, he sprung into action while I remained stunned and on the verge of getting sick. “Get him,” I groaned as I fought back the urge to vomit. Lifting Sophie gingerly from the bed, as if she were injured, I carried her into the bathroom. Stripping her pajamas in the tub, I scrubbed her delicate skin under water as hot as she could stand until the germs fell off and her sobs subsided. After wrapping her in a towel, I handed her over to Pat as he long-armed Peter toward me.
It was a morning I’ll never forget. By early afternoon the house was sanitized, as were the human occupants. I remember sitting at the breakfast bar, sipping strong coffee while I stared numbly at the rivulets forming and reforming on the windowpanes. I couldn’t manage much more. Peter was busy rifling through our junk mail, stacking the flyers and advertisements into a big messy pile, and Sophie was engrossed with her Little People farm. Every once in a while the blare of Cock-a-Doodle-Doo would rouse me from my thoughts and I’d turn and smile toward our daughter. Surfing the Internet from his perch on the coach, Pat too would look up and smile briefly. We had so much to talk about and were biding time until we had some privacy.
Before we put Peter down for his nap, we explained very simply that he would be spanked if he ever did that again. Unsure whether he knew the English word, we gently but firmly demonstrated the spanking process. “Peter know,” he nodded solemnly. “Peter know.” I don’t know whether he knew or not but two days later he delivered an encore performance. Enough was enough. We’d been tolerating the “poop on one end and pee on the other” bed routine for six months. Every possible solution we tried to stop the behavior, including putting a potty in his room, either backfired or didn’t help. Not charts, not rewards, not consequences. And he had upped the ante substantially.
So as promised, the second time around we spanked him. It felt like a defeat, certainly. During all the years I dreamed of becoming a mother, my imagination never took me to a place where I resorted to spanking a toddler I’d brought home from Russia only six months earlier. But I also never dreamed of parenting a child who willingly covered himself in feces. I was at a loss, and so was Pat.
It’s not that I think children should never be spanked or that any parent who chooses to spank is a borderline abuser. But spanking our kids? That was different. Sophie and Peter had been neglected and half-starved and who’s to say they hadn’t been physically or even sexually abused? We just didn’t know. But we also felt like we had no other choice. Perhaps the worst part of all is that the spanking worked. He never did it again. As we would soon discover, Peter experiences some kind of psychic release when he’s thoroughly punished, whether spanked or disciplined in some other way, which by far is the more usual scenario. It’s almost as though he’s hit rock bottom but doesn’t realize it until a strong punishment intercedes to alert him. Only then can he pull himself together and resurface.
Looking back on this phase of our lives, I now understand that Peter wasn’t able to hold himself together, that the strain of keeping his behavior and impulses in check was too great for him to bear any longer. The honeymoon was over. Maybe by that point he felt secure enough in our home to shed the perfect robot routine. Conversely, maybe the sudden change in course signaled his inability to cope with the demands and nuances of family life. To this day I’m unsure which is the more probable explanation or whether there’s even a third or fourth consideration that would shed light on the shift that occurred.
Unfortunately, the feces smearing incidents, though perhaps the pinnacle acts of his rapid descent, weren’t the only issues with which we found ourselves faced. During this period he also became destructive, ripping wallpaper from the walls in the middle of the night and pulling toys apart piece by piece. “Truck broke,” he’d complain, showing me the various pieces he plucked apart. “Garbage time.” Whenever Pat or I tried making him acknowledge his role, so that he understood his actions caused the toy to break rather than random fate, he would scream red-faced, “Peter no break. Truck broke!”
It was in this manner that I gradually came to understand that Peter had trouble making logical connections. For a long time I thought he was just being stubborn, that like most young children he didn’t want to admit his mistakes or his role in a particular misdeed. But over a period of time I realized that Peter constantly overlooked, even angrily denied, the most obvious cause and effect relationships. Twisting the arms of sunglasses will cause them to break. Ripping the wallpaper will bring about a consequence. There’s no dessert when dinner is left uneaten. The doorbell always signals a visitor at the front door (as opposed to another door). Dishes will break when dropped. Peter simply didn’t register these kinds of unshakeable facts.
Not only was his inability to make logical connections a serious source of concern, it made disciplining difficult because Peter doesn’t learn from his mistakes. More likely than not, he’s destined to repeat tomorrow and the next day the mistake he made today. Maybe on some level he understood this, or at least sensed on a basic level that he lacked the tools to navigate the complex world of family and expectations. Maybe that’s why he opted to take no risks or make even the simplest of choices during those first months home.
In the orphanage there were no choices. Peter was never left alone or unattended, not even at night. Fifteen other children slept with him and a caregiver stood watch, or at least remained minimally conscious, throughout the night. Meals were eaten in groups with caregivers combing the aisles to help or maintain order. Toys were kept high on shelves and to the extent they were brought down, they weren’t scattered across the floor so children could pick and choose. Children were given one toy at a time. Use it or lose it. In the orphanage Peter was told when to potty, when to play, when to go outside, when to eat, when to shower, when to sleep, when to be quiet and when it was okay to make noise. It’s the kind of system where independent thought is not encouraged and certainly not required, and where a lack of independence or self-regulation might actually make yielding to the rules easier.
But in a home, he was free, at least relatively. Free to explore his environment, free to make certain choices, such as what he wanted for snack, and free to express his thoughts. The same held true for Sophie but the difference was that where Sophie learned from her environment and adapted, Peter became more bewildered and frightened. He didn’t have the tools.
Once he began showing his frustration, whether by smearing feces, ripping wallpaper or launching rocks at Sophie’s head, other telltale signs emerged. For instance, once he realized there was plenty to eat, always, and that he would never go hungry, he began using food as a weapon. He often refused to eat dinner. Keeping a single piece of food in his mouth, whether a pea or a bite of chicken, he would chew and chew but never swallow. Over time, his refusal of food evolved into a more active assault where he made himself throw up at the table, especially in restaurants. Logical consequences had zero effect. He either never made the connection or he didn’t care. Sometimes Pat and I still catch ourselves uselessly debating which is the more prevalent of Peter’s states of mind, can’t or won’t. It’s impossible to say because the two are inextricably intertwined.
The behavioral regression we began witnessing during this time was further complicated by what seemed like developmental backtracking. His rate of language acquisition reached a sort of plateau and he began exhibiting unusual physical movements. He repeated himself constantly, particularly his name, and always in a loud, monotone voice. Busily engaged in the “crashing, screaming, falling game,” he might for example, hear someone ask for the time. Without awareness he’d parrot the question, “Is it 6 yet?” He also could spin on the middle of the living room rug for thirty minutes straight, oblivious to any action around him. He regularly walked on his toes and flapped his hands. Sometimes he rolled his head so violently he looked like a ragdoll drunk on a rollercoaster.
By May, we knew something was seriously wrong. Despite varied opinions and our own desire to wish them away, Peter’s behaviors could no longer be ignored or casually explained. Instead of lying awake wondering who Peter was and how spooky it felt to live with a child we barely knew, our sleep soon became interrupted by an entirely new brand of torment. Namely, whether our son was missing a few key ingredients, components essential for normal childhood development. Afraid to waste any more time, I made appointments at Vassar Brothers Hospital to have his hearing and speech evaluated and at our local hospital to have him seen by occupational and physical therapists.
The wait and see game was officially over. Peter had let us know, loud and clear, that time would not heal his wounds. Frightened as we were, at least we didn’t miss this last desperate scream for help.
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March 2, 2010
Tags: adoption, attachment, autism, biro, Christmas, Dr. Jane Aronson, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
September 20, 2007. Peter raided our bathroom in the middle of the night. Pat found loose pills and open bottles. Somehow he figured a way to bypass our safety precautions. In the past, his midnight adventures revolved around smearing the walls with lotion or shampoo and pouring Pat’s aftershave down the drain. This morning he tearfully admits the mischief, which I take as a good sign because like most kids his age, his strong inclination is to lie. He is still upset when I pick him up from school. His sister is also having a hard day though I nearly miss learning why. Sophie wanted to share the adoption book we made last summer with her class but felt too shy when the time came. I try listening to her on the drive home but get distracted when Peter throws a soccer ball into the front seat. It grazes my head before bouncing to the floor. I pull over immediately to address the behavior and start to reprimand Sophie for interrupting. Then I realize what she’s saying. She’s trying to tell me she didn’t show the book because she was afraid the other kids would tease her for being adopted. I’m so angry with Peter that I nearly miss the confused, timid tone in her voice. My daughter, who until now has soared through her short life with us with enviable confidence, is becoming aware of differences. We have always celebrated the difference in how our family was formed but at five, Sophie for the first time is venturing beyond the protective confines of home, where other perspectives abound, and where differences aren’t always celebrated. I spend so much time searching for a solution or even a temporary salve that might soothe Peter’s tortured soul that I’m failing to focus sufficiently on my other child’s entirely rational fears and needs. Sophie can be helped, really helped, and yet concern for Peter, a concern bordering at times on terror, preempts all else. This has to change. Although it would be wrong to give up on Peter, the real crime would be surrendering Sophie’s chance at emotional wellness in furtherance of his. As part of this family she’ll always be more than just a bystander when it comes to Peter’s troubles, but I have to minimize the collateral damage. I must learn to listen to Sophie even with soccer balls whirling overhead.
Chapter 18: Is That You, Santa Claus?
I never think back to our first six months home without feeling flooded by memories of ambivalence, confusion, joy, and relief, a mixed bag of feelings that don’t typically complement each other. On the one hand, the children were home, they were ours, and we were a family whose members were learning to adjust to the cadences and demands of one another. I was quickly becoming a competent parent and Pat was re-discovering some tricks of the fatherhood trade he had shelved more than a decade earlier. We were on the path toward becoming a whole, healthy family and should have been content and satiated with the bounty of our blessings.
And there were blessings. When Sophie first got home her legs were so spindly and weak she couldn’t climb the stairs or pull herself onto the couch. If she tried walking without assistance on a path with even a slight slope, she’d wobble and fall, exhibiting what Dr. Aronson called “poor motor planning.” Pat and I called it “poor bruise prevention,” often joking that Sophie’s skin tone, especially during those first months home, was a mottled black and blue. All elbows and knees, our precious bundle of occupational hazard doled out as many bruises as she suffered.
Dr. Aronson strongly encouraged us to have her evaluated through our county’s Early Intervention program, reminding us that institutionalized children lose one month of development for every three months they spend in an orphanage. Sophie’s motor skills were so delayed, and her rickets so severe, that she didn’t think we should risk waiting. However, in the three weeks it took to arrange for the Early Intervention therapists to come to our home, her health and ambulation improved tenfold. In fact, she’d caught up. She didn’t qualify for occupational or physical therapy services, and astonishingly, her English language skills, both in terms of what she was able to speak and understand, were age appropriate.
At the time, Dr. Aronson suggested we have Peter evaluated too, but because his motor skills were more developed than Sophie’s, she thought giving him time to adjust was the greater priority. She felt the bed soiling incidents likely were attributable to stress, including stress that was possibly derived from fear over leaving his room to use the bathroom. She suggested we put a potty near his bed and let the issue resolve on its own, without giving the unwanted behavior negative attention. This was important, she advised, because orphanage children, even those as young as Peter, quickly learn that certain unacceptable behaviors will cause even the most immune and indifferent caregiver to perk up and pay attention. In adoption speak, these are called maladaptive behaviors, maladaptive because they may help a child survive in an institutional environment, but they interfere with bonding and general integration into normal family life.
Her line of reasoning made sense to us, and it helped assuage our worries over what we considered disturbing behavior. Plus, as pleased as we were with Sophie’s progress, we were also encouraged by the positive changes in Peter. To begin, he grew so quickly I had to replace clothes and shoes every month. By the end of our first year home, he had grown ten inches and gained twelve pounds. During a checkup, I remember the nurse apologizing for the “mistake” in his chart when she wrote his new measurements down. After listening to me explain that he really had grown that much, that it was “catch-up growth” and not an error in transcription, she just stared at me, mouth agape.
During this time he learned how to pedal his tricycle like a champ, discovered the simplistic beauty of Thomas the Tank Engine, experienced the joy of sledding, and poured with devotion through endless picture books. He used the potty (peesit!) regularly and never had any accidents, although we still struggled with the bed soiling trick. The bald patches and wispy hair began to thicken and grow with regular haircuts and plenty of healthy food. Physically, he was thriving.
But in other ways, he wasn’t. Week after endless week Pat and I waited for Peter’s personality to emerge, for the memory of the adoption trauma to subside enough so he could show us who he was. That’s what we thought, and what we told ourselves for a very long time: that he was traumatized, shell-shocked, but with enough patience, love, and understanding, he would learn to trust and become less guarded, less inhibited.
As weeks turned into months though, our largely unspoken fears failed to subside while the nervous glances Pat and I exchanged over breakfast began to increase. We could never quite put our finger on it, but there’s no doubt we felt the oddity, the inherent lack of synchronicity, settling like fog over our new young son. We kept waiting for the boy hidden inside the boy to emerge, but he hadn’t, at least not yet. There was a distant, detached, almost hollow quality about his demeanor, as though the boy we saw, the one we called Peter, was shielding someone else entirely; a child who was darker, more complicated, and definitely hurt.
And there were more than just the uneasy, hard to define feelings. His overt behaviors were odd too. For example, he wouldn’t look us directly in the eye, though he happily smiled for the camera. Whenever he sat, he kept his legs straight out in front, just as he had in Russia, and he had this way of stomping his way across the floor, knees locked. He was as rigid and inflexible as the action figures we encouraged him to play with – he only seemed to bend in a few key places. He also wasn’t speaking much, though this was lower on our list of concerns because I’d read online that international adoptees must first lose their native language before their brain can acclimatize to learning a new language.
Play was another area of concern. Peter could occupy himself for hours with a solitary car or wooden block. At first this seemed like a good thing because I could get all kinds of chores done around the house, but it wasn’t. He wasn’t exploring his environment, the way Sophie was, or interacting with his toys in any purposeful way. Early on, Pat dubbed the phrase “the crashing, screaming, falling” game to describe Peter’s favorite activity, then and now. No matter what’s at hand, whether car, penny or cereal bowl, he’ll lift it over his head, look at the object with growing trepidation, then lower it quickly in a simulated crash, all the while screaming “awwwwwgh.” Although there’s nothing unusual about a boy amusing himself this way, Peter will do it all day long until someone interrupts the ritual and makes him stop. That’s the unusual part.
We understand that now but at the time we gave this strange fixation, along with all the other odd behaviors, the benefit of the doubt. Peter didn’t know how to play, he was living in the shadow of Sophie’s big personality, he was a naturally wistful child, or maybe he was reacting negatively to the potent mix of medications he took on a daily basis. Both Sophie and Peter had to take Isoniazid (INH) for nine months to kill their latent TB infections as well as multiple rounds of medication to eradicate giardia from their intestinal tracts. Perhaps, we told ourselves, the combination of these powerful drugs was causing side effects that impacted his behavior and mood.
When we began confessing some of our concerns to Peter’s pediatrician, at least the more objective ones, he suggested we enroll him in preschool. “He needs socialization,” he told us. “He doesn’t know how to interact in a normal environment – he’s going to have to be taught.” So that’s what we did. After a week or two spent researching our options, we enrolled him in a wonderful little nursery school whose teachers and administrators were thrilled to have him. Peter wasn’t their first internationally adopted preschooler, but he was their “freshest” in the sense that he hadn’t been home very long. He would start in January, right after the holidays. As for Sophie, I enrolled us in a Mommy and Me class that met at the same school every Tuesday morning. She would get to meet and socialize with other two-year-olds and I would get to know their moms.
Having made that decision, Pat and I did our best to shelve our worries and resume the business of becoming a family as well as adjusting to our new relationship as married parents. Pat had an easier time with this than I because my list of worries rose as high as a mountain where his resembled more of a hill. But I tried, and in large part, I succeeded. Bringing home two toddlers at once from an orphanage in Russia is a formidable undertaking, one we clearly hadn’t appreciated sufficiently at the time but that was becoming abundantly clear with each new day. Pat and I were exhausted. As in dead tired, asleep on our feet, is today Tuesday or could it be Friday, and how many years before they leave for college tired.
But when the units were nearly up, the children bathed and cozy in their fleece pajamas and perched on our bed watching Corduroy or listening to Goodnight Moon, I allowed my thoughts to drift toward Pat. Childless for many years, we had long ago discovered a beautiful rhythm to our relationship that could be sustained indefinitely with love, attention, humor, and respect. Although becoming parents to Sophie and Peter hasn’t challenged the depth of our commitment, it has altered the composition somewhat. For instance, patience, a quality rarely called upon before the kids, has become a key player in our successful alliance, as has perseverance and humility.
Once we recovered from the first exhausting month or two, when we’d fall into bed, flat on our backs and still fully clothed, approximately three minutes after we kissed the children goodnight, Pat and I in earnest began reclaiming ourselves and our marriage, at least somewhat. By three months into the adoptions, we were capable of staying awake long enough, at least on most nights, to watch a movie or participate in a conversation lasting more than five minutes. Little by little we became less like deer in the headlight and more like the human beings we once resembled.
Although our waistlines suffered, our grammar deteriorated, our love life cooled, my cooking abilities declined, and we both sloughed a good ten points off our IQs, we were adjusting. Our first Thanksgiving came and went without much fanfare because we opted not to travel to the mountain house in North Carolina, where my siblings meet for the holiday. We had a quiet dinner at home, just the four of us, but with all the usual trimmings. Afterwards we watched the geese practice their landings on the fallow cornfield across the road. Sophie and Peter had no real sense of the holiday, but like every other day, they absorbed the experience eagerly, each in their own way. Sophie made a place for her Cabbage Patch doll at the table, carefully removing a booster seat in the kitchen to help prop her up while Peter greedily inhaled the luxurious smells of Thanksgiving dinner, making sure to stay nearby so as not to miss out.
Our first Christmas was memorable for all the reasons first Christmases are always memorable. Sophie and Peter whizzed through the holidays with wide-eyed stares and disbelief, their innocent joy and unaffected sense of wonderment spreading like a contagion to anyone lucky enough to have mingled with them. Everything they saw, everything they touched, heard or tasted was so new and captivating that they became wholly mesmerized: Christmas lights, the tree, jolly music, sparkly decorations, scores of sugary treats. Nothing was too small or insignificant to explore and appreciate. A bowl of candy canes at the Dry Cleaner’s produced the same level of enchanted euphoria as the grand spectacle of Santa and his Elves at the mall. We made batch after messy batch of holiday cookies with overnight guests while dancing in a floury, sprinkle-strewn mess to Chipmunk Christmas music.
Between gifts and books we bought ourselves, we must have acquired 90% of the children’s holiday books ever written, from Corduroy’s Christmas and Madeleine’s Christmas to Father Frost and Twas the Night Before Christmas. We read them religiously every night even though we knew the children couldn’t decipher most of what they were hearing. But as Christmas drew near, Sophie could sing a good many of the words to Rudolph the Red-Nosed Reindeer and was able to ask Santa, when the opportunity arose, for a brand new kukla (doll).
Peter participated actively in most of the festivities and I smiled with relief to see his normally doleful eyes sparkle in a way I hadn’t imagined possible. Pat, who was always willing to yield to the deceiving caress of Peter’s apparent wellness, was more convinced than ever that time and love would heal. Christmas came and went that year without snow on the ground. Pat gave me a Lladro figure of a little girl to match the figurine of the boy I’d bought in Moscow on the way home from our first trip. He catches me by surprise sometimes, that husband of mine, and that Christmas morning I found myself crying, tears of joy and blessing mixed with fading melancholy for Ben, the baby I had begun allowing myself to forget. But it was okay, and surely Pat knew that. The Lladro figurine wasn’t Ben, it was Peter, and after I opened my present and felt the cool delicate porcelain against my skin, Pat lifted it gently and placed it next to the other on our shelf. Our family was complete.
I look back on the thousands of photos I took of Sophie and Peter over the course of our first holiday season and wonder where that bright-eyed boy is now. Peter was at his best then, as though he’d been granted a temporary reprieve from the demons and disasters that play havoc with his mind. He loved the presents, adored the attention, and had his hand in a plate of cookies every time I turned around. As Pat and I watched our sleepy children play in front of the crackling fire toward sundown, I began to trust, really trust, that Peter would emerge from whatever protective cloak he had constructed, and that one day soon, he would be okay.
Slumped with Sophie against the nylon wall of their new play tent, talking on a toy phone, his new cowboy hat perched cockeyed over one brow, Peter seemed a beautifully typical 3-year-old boy. As usual, Sophie controlled the scene, barking weary instructions to her new brother with what had become their secret, indecipherable language, some sort of scaled down Russian with a sprinkling of mispronounced English words. Not only was he listening, he was interacting, and playing. Not with Sophie’s characteristic display of complex thought and imagination, but he was holding his own.
Pat and I fell asleep that night watching an old Judy Garland Christmas Special aired on PBS. Her voice gravelly and strained from years of alcohol abuse, we watched as she floated around her living room with Mel Torme and her three children singing carols and reminiscing in black and white about Christmases past. As nutty as it seems, I found myself searching our television screen for glimpses of her children’s philtrums, including Liza Minelli’s. Did she drink while she was pregnant? Could her children be alcohol exposed? I don’t know. I never caught a good glimpse because the film was grainy and I was too tired to keep pursuing such a pointless line of thought. But what I did notice was Judy Garland’s eyes, the ever searching, soulful way they could seduce you into believing even the gayest Christmas carol was meant to induce melancholy.
She had Peter’s eyes, our new son who was asleep down the hall and who had been momentarily distracted by the gaiety of Christmas. I saw that instantly. But unlike Judy Garland, whose life can be dissected and studied on the Internet, I knew nothing of Peter’s past, the little boy whose dark, plaintive stare can convey a life’s worth of sadness, hurt, and disappointment.
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February 20, 2010
Tags: adoption, attachment, autism, biro, Dr. Jane Aronson, fetal alcohol, international adoption, parenting, post-institutionalized, rickets
September 19, 2007. Peter and Sophie went to the dentist today. They both have hypoplastic teeth, Peter’s two permanent teeth are coming in paper thin and nearly devoid of enamel, and Sophie is congenitally missing two permanent teeth on the bottom. Dental problems are common with Russian adoptees, resulting from some combination of poor nutrition and rickets, overexposure to antibiotics, and inutero alcohol and/or drug exposure. So this is really no surprise though it’s not welcome news. Some form of dental insurance will need to be part of our future. Having someone poke around the inside of his mouth with sharp instruments and whirring contraptions is not Peter’s idea of a fun way to spend the morning. And so I braced today for the worst. But it didn’t happen. He was as cool as a cucumber and instead, Sophie proved the crankpot. There’s a lesson in this for Pat and me. Sometimes we’re so on edge about what may happen in a given circumstance that we forget to give Peter the benefit of the doubt and more importantly, the gift of our confidence. He frequently surprises us with his abilities and tolerances but it’s the catastrophes that lurk in our memories and too often drive our expectations. To reward Peter’s even keel, and perhaps to help me remember to be more optimistic next time, I take the kids for ice cream on the way home. Probably not what I should be doing for two kids with lousy dental reports, but what the heck. Sophie’s face and shirt, covered in dripping chocolate mess, juxtaposed against Peter’s meticulously clean face (he carefully eats his strawberry ice cream in a way that ensures minimal food to skin contact), makes me smile. Eating ice cream in the middle of a late summer day, when one rightly should be in school, is an equal opportunity pleasure.
Chapter 17: The Parade Marches By
Pat and I decided not to tell Patty or Mark about that first bed-soiling incident. We were horrified of course, and worried that something was terribly wrong, but we were also confused. I wanted Patty’s take on Peter’s behaviors, but this discovery was in a different category altogether. My siblings knew even less than we did about the complicated psycho-social issues involved in international adoption, and we were cognizant of not wanting to set off alarm bells that could not be later unrung. But why would a child do that? What did it signify? What was Peter trying to tell us? None of it made sense. If he needed to relieve himself, why didn’t he just go in the Pullup he wore for safe measure, or better yet, use the toilet? There was not a speck of mess on either his pajamas or Pullup. Whatever the reason, one thing was clear: his actions were deliberate.
After Pat and I cleaned what we could and stripped the bed, we tried talking to him, which was an exercise in futility, of course. Peter didn’t speak English and we didn’t speak Russian. But we did know a few key words: nyet (no), da (yes), peesit (pee) and kakut (poop), which enabled us to say something along the lines of “nyet peesit, nyet kakut, nyet in bed (and then we pointed to the bed). Peter just stared at us blankly, picked up a familiar book, and walked out, repeating “nyet, nyet” as he began clomping down the stairs. I walked him back up and into the bathroom, where I pointed at the toilet and implored, “da peesit, da kakut.” He nodded. Da da.
Mark left that afternoon and Patty flew back to Atlanta two days later. Although I can’t imagine asking any of my siblings to keep their distance, I know now it was a mistake to have visitors, especially as many as we welcomed, those first weeks and months home. Having Patty and Mark with us those first days was a tremendous comfort, especially for me, but it wasn’t best for Sophie and Peter. They needed time to adjust to their new environment – language, diet, smells, routines, clothes, weather, a home; they also needed time to become accustomed to us, their new caregivers. They’d been taught in the orphanage to call us Mama and Papa, but they had no reference from which to attach meaning to those words. They were coveted titles we would have to earn.
Over the next two months we ran a bed and breakfast for an impressive number of family and friends. After my sister left, my brother’s wife Paula arrived to take over the helm. She wasn’t working at the time and was able to stay 5 or 6 days. Her presence was incredibly welcomed and helpful. She taught me about cutting grapes in half, as well as how to introduce new foods, clip wiggly toe and fingernails, buy shoes for toddler feet, cut juice with water, and even assemble an outside Little Tikes jungle gym.
And like Patty and Mark, she has an amazing sense of humor, an ability to bring levity and laughter into the mix of genuine challenge.
In fact, she’s the one who devised the unit system, to which we all still fondly refer. Somewhere around 10 days into the adoptions, Pat and I began looking terribly ragged, primarily because we were losing the battle for control of the premises. The children’s needs and activity levels were eons beyond what we anticipated; not only were we struggling to keep pace, we were losing ground. It’s not that we didn’t count on their being busy, we knew they were toddlers, we just failed to estimate the extent of their frenzy. Russian orphanages may be called Baby Homes, but they don’t look like homes, and they aren’t run like homes. Consequently, Sophie and Peter arrived with no understanding of what family meant and with no experience to help them safely navigate either the hidden or avert dangers present in all homes. For instance, neither of them knew that stoves are hot, couches are for sitting, electrical outlets are dangerous, fireplaces aren’t for hiding, refrigerators are cold, washing machines make noise but aren’t dangerous, bookshelves aren’t ladders, toilets aren’t just for flushing, drawers pop out when tugged, and most knobs and dials turn something on.
They were blank slates on greased-up wheels. Thank goodness Paula suggested the unit system to help us through the day. One thing we were successful in doing right off the bat was establishing a wake/sleep schedule. I’m not sure how we did this, but I do know our will to succeed was fueled by some brand of instinctual desperation. We were exhausted and would not survive without rest. So the children went to bed at 7 p.m. and woke, most mornings, by 7 a.m. That meant there were twelve waking “Rooskie” hours per day, and Paula suggested we divide the time into half hour units, which equates to 24 units a day. One unit taken up with breakfast, one with lunch, three to four with nap, 1 with bath time, and so on. Not only was this incremental approach great fun, “One more unit to go,” or “Hey, if you keep the kids up late, you’re gonna owe me a unit tomorrow,” it also helped preserve our tenuous sanity.
Buoyed from the help of my siblings and sister-in-law, and armed with the unit system to fool us into thinking what we’d done to our lives was survivable, Pat and I began to fall into some semblance of a schedule. Except that is, until our next round of visitors arrived, with presents, cakes, hugs, kisses and loads of heartfelt enthusiasm, and we’d have to start from scratch again. My other brother Lee, friends from Atlanta, Pat’s daughter Jenny and her husband, Patty again with her teenager children, Mark again with the rest of his family, my grown nephew and his wife, and then in masse, the rest of Pat’s family. It was wonderful, exciting, and comforting for Pat and I to be showered with so much love and support, and yet this extended period of celebration really did nothing more than prolong what was already a difficult adjustment period for Sophie and Peter.
I remember when Pat’s clan came to visit, in masse. At least I had the presence of mind to know that eight or so strangers showing up at the house would overwhelm the kids, but there was nothing I could do. They were excited to meet Sophie and Peter, and we were anxious for the visit to go well, to prove that our decision to adopt was correct, that our decision to start what for Pat was a second family was not destined for failure, heartache or division. His family is fiercely protective of him and they’d always been reticent about our plans to start a family. After countless years of being lost in his own grief over the death of his two sons and the failure of his marriage, and almost paralyzed with fear over how those events would shape his surviving daughter, he had emerged into life again. He and I were so happy when we first met and throughout our first childless years of marriage. I understand now that his family was worried, if not terrified, that we had gone too far, had moved too fast, and mostly, had taken on more, in terms of the children, than he ever should have been made to handle. Just as Pat was getting his footing back, we decided to bring home two busy and demanding toddlers capable of shaking the earth off its very axis.
But I believed in Pat, and still do, with the bold confidence of the newcomer who, unlike the people standing in our doorway, never had to shoulder the burden of walking beside him through those dark, lonely years. I believed him when he said he wanted to give fatherhood another try and I clung to this belief in the days and weeks after we first brought the children home. I especially clung to this construct as I welcomed Pat’s family into our home on that late autumn afternoon. I remember thinking the first snow was near because I could feel the heavy air as it swirled around our property, plucking without apology the last few remaining leaves from their branches.
They were all smiles and hugs as Peter jumped into arms and laps as casually as though he had spent every day of his life with my husband’s family. It was a worrisome pattern Pat and I had begun to recognize but rarely voice beyond the privacy of our bedroom, and one that we still combat today. Peter displays indiscriminate friendliness, meaning he’ll seek affection, when he needs it, with expert adroitness. The boy who screamed if I tried holding him more than a minute, who’d tilt his head away from my body as though we were opposing magnets, nonetheless knew how to charm and win the affection of Pat’s family, and all the other visitors who revolved through our door those first two months home. Even then, I remember thinking his over-friendliness toward people he barely knew really was like that of an addict willing to trade actual happiness for momentary, fleeting euphoria. To this day, Peter favors the quick fix of a stranger’s praise or affection over lasting intimacy and closeness.
Pat and I barely understood what we were witnessing during this critical time period, but we knew there was something wrong. In my mind, the visit by Pat’s family cemented my concern. Sophie was so overwhelmed by the number of good-intentioned family members fawning over her that she retreated to the bathroom and refused to come out. She didn’t speak the language, people she didn’t know were asking for hugs and kisses, and she became overwhelmed. In fact, she would not come out of the bathroom until everyone left, two hours later. Although I was disappointed that Pat’s family would have to meet the “real Sophie” another time, her behavior was understandable, and developmentally normal. But Peter was holding court, and not in a happy, healthy way, either. He bounced from lap to lap, briefly hugging and squeezing necks and repeating paduski as he worked his way around the room like a spinning top.
But with the exception of the bed-soiling incident, which unfortunately evolved into a chronic problem, and the dichotomy of Peter’s over-affection toward visitors but under-responsiveness with us, our initial transition was easy. Sophie delighted in every way and with every move, her spunk, cognitive prowess, and resiliency evident to all who met her. And Peter was compliant. Other than the bizarre behavior regarding his bed soiling, he was incredibly easy. Though we didn’t understand it, Pat and I weren’t even sure the bed soiling was deliberate conduct. This was partly because Peter never did anything else wrong. He was a picky eater and aloof, he repeated the few words he knew, whether in Russian or English, with annoying consistency, and he was still stiff and robotic in his manner and physical gait, but he also was completely obedient. He never tested a single boundary we established and would become visibly upset whenever Sophie did, which was often.
But it was also like he was a ghost, or maybe an empty shell. One night when the units were up and we lay exhausted in bed, Pat and I confessed that neither of us had any idea who Peter was. He was our son, he was living in our house, we were meeting his needs, but he either lacked or would not reveal any of the personal traits, habits, or preferences that distinguish a person, even a 3-year old person, as an individual. It was an uneasy, hollow feeling we shared, and we talked at great length as to the reasons we felt that way. Were we doing something wrong? Letting Sophie steal too much of the show? Our questions were as endless as they were unanswerable. We only knew we had no inkling into the heart or soul of the little boy we named Peter, a child who needed and deserved parents, and to whom we had committed to love and nurture the rest of our lives.
Other than the hundreds of mistakes we made during those first weeks home, and the uneasy feelings we’d begun to accumulate about Peter’s odd behavior and almost surreal submission, the visit into the city to see Dr. Aronson also remains prominent in my memory. We had taken the children to our local pediatrician, Roger Green, in the first days we were home so that he could make sure we weren’t overlooking any urgent problems. Knowing we planned to have the children fully evaluated by Dr. Aronson, he graciously agreed to wait for her workups and reports and then implement any care or interventions she recommended.
Although Dr. Green, who also is an adoptive parent, withheld his initial impressions at the time, he later shared that when he first met the children, his immediate reaction was that Sophie was in dire shape. Grossly underweight, nearly bald and the size of a 10 month old, he thought her more physically frail and medically fragile than Peter, who despite his short stature, had a certain robust quality.
We would eventually exchange knowing smiles over the irony of those first impressions as Sophie grew stronger and livelier with every passing month while Peter’s clinical and psycho-social presentation grew more troubling and perplexing. I couldn’t help but recall, and in many ways recoil over, what Dr. Aronson said to Pat and me during the days we agonized over the baby Ben: you can heal the body, but the brain’s a whole different ballgame.
In fact, when we brought the children to see Dr. Aronson, she repeated this mantra, but in the context of reassurance. Sophie would heal. We would make her well and strong with the basic ingredients of parenting: food, love, nurture, and attention. Her head circumference was good and she showed no signs of alcohol exposure, either physical signs or cognitive patterns. Peter did have telltale signs of FAS, as her personal inspection revealed, but as she wrote in his report, “only time will tell.” His weight was good and so was his head circumference. He was incredibly short, a finding she labeled “psycho-social drawfism,” but she felt this would resolve in time, and it did. Blood work revealed they both suffered from rickets, which is caused by a lack of vitamin D (which is found in both milk and sunlight), they were both infected with giardia, and they both tested positive for TB.
We weren’t exactly happy with the news, but we weren’t shocked either. Lots of orphanage kids have these diagnoses, and as for the TB, a lung x-ray would hopefully reveal they had been exposed but not actively infected. I filed the possible FAS news news away in the same part of my brain as I had filed the apprehensions I’d felt upon first meeting Peter in Russia. We were moving forward, he was ours, and there was no going back. I spent the rest of our time in Dr. Aronson’s office relishing in the excitement of being new parents, of having taken this journey with her for nearly a year, and the triumph and excitement of having her meet our children face to face, in flesh and blood. She had helped us weather many storms during our tumultuous passage toward parenthood, and she would continue to guide us in the years to come. “They’re here,” I felt like saying. “They’re real and they’re ours!”
Even though I knew she met parents with their newly adopted children on a frequent if not daily basis, she shared our joy and excitement genuinely, with open heart and reverent respect for the incredible milestone our visit represented. As we left her office, with Sophie and Peter irritable and still howling over having been probed and stuck with needles, she yelled to us over the din, her wild gray hair flying as she sped to catch us. “Don’t forget their vaccination schedules!”
February 16, 2010
Tags: adoption, attachment, autism, biro, Dr. Jane Aronson, fetal alcohol, post-institutional autism, post-institutionalized, siblings, sisters
September 16, 2007. Peter is so difficult on the way home from school Friday that I ask Sophie to go inside so he and I can have a private discussion, right there in the car, inside the garage. No distractions, no getting out of his car seat until he at least hears me out. Peter can’t or won’t answer “why” questions and so instead I offer several suggestions to open him up, hoping something finds purchase. When I finally ask whether he thinks I love Sophie more than him, the usual parroting stops and he answers “yes”. My heart sinks. We’ve covered this territory before but Peter doesn’t understand cause and effect. He doesn’t understand his behavior affects how people treat and feel about him at any given point in time. For instance, he shouldn’t expect to be showered with affection on the heels of throwing Sophie’s presents in the garbage bin, but he does. I try explaining again, a wrenchingly sad task because Peter also doesn’t accept or trust the permanence of love, but then I stop. What he does next takes my breath away. My emotionally blunted son, the boy who hurts himself and tells me I smell, crawls over the seat into my lap, takes a tissue and gently dries my teary eyes. I suddenly ache with a pang of love so big that it catches me off guard. I can’t stop crying now and so he comforts me, “I know, Mom, I know,” he says. “I’m sorry, Mommy.” I tell Pat that night and cry again all over. But the same volatile, moody boy wakes us the next morning; the talk has had no effect and my renewed hope wilts. The opportunity arises again later in the day, and the talk begins anew, as though Friday’s discussion never occurred. This time Pat is with us. Twenty minutes later, we arrive at the same emotional, cathartic end point that we reached in the garage the day before. And again, Peter is wiping my eyes, gently following the path of my tears with his fingers. He’s not faking or manufacturing a moment. It was as real to him last night as it was Friday after school, and so it is real for me too. I have no choice but to sway in time to Peter’s rhythms, no matter how inconsonant. This morning he runs into our room and tells me he loves me. The second talk, it seems, has taken hold. Sophie and Pat go downstairs to start breakfast and we play a game where I hug all his parts. I hug his feet, and his knees, his thumbs and even his hair, careful not to tickle or squeeze too hard. This moment feels so good, so natural. Peter feels it too. He smiles easily at me and my heart soars. A moment later I feel his body tense, slightly, and he kicks me; not so hard it hurts, but it’s not friendly. He turns his face away and swings back, anger flashing, revealing, if only briefly, the aggression that lurks beneath the surface. He doesn’t know why this happens. I ask and he says he doesn’t know. He is sorry. I’m sure he is. He can’t seem to hold a mood. He tries but something dark inside grabs hold, snuffing his will away. The spell can be broken, though I’m not sure by him. Someone else has to intercede, and usually it’s me. I’ve become chief guardian of Peter’s happy moments and easy mood, all the while staying vigilant against the undulating lability of his mind. The boy I love traces my tears with his fingers while his own drip shamelessly down his face. That boy deserves protecting. That boy deserves to know, deep in his bones, that I love him with every fiber of my being; that my love, though imperfect, is complete, whole and inalterable, just as my love for Sophie and Pat.
Chapter 16: We’re Home!
Before we adopted, most of my career was spent working as an enforcement attorney for the United States Environmental Protection Agency. Eight years in Atlanta and almost four in New York City. Pat playfully still refers to two of the attorneys in my division, Carl Garvey and Tom Lieber, as my “office husbands”. Carl was a fellow staff attorney and Tom was our supervisor. Both are exceptionally kind and generous people, and kidding aside, they and their families are among our most cherished friends.
When we finally made it through customs at JFK, where a bewildered Sophie and Peter were welcomed as U.S. citizens for the first time, Tom and Carl were waiting for us, happily waving a stuffed horse for Peter and a blue elephant for Sophie. They had picked up our car, which had been left at the Lieber’s in Oyster Bay, and driven it to the airport during rush hour so that we could leave directly for upstate. I was so happy to see my office husbands, with their goofy grins and bouncy steps, I audibly gasped with relief. We had gone through so much, our new family of four, in such a short time, and the finish line was within sight. Exhausted, scared, disoriented, and excited, we were in one piece, and thanks to our friends, would be home for good in just a couple more hours.
I don’t know how Pat managed to drive the 100 miles or so in his near comatose condition, but we arrived home in one piece. It was about 8 p.m. in New York and we decided to put the children to bed in their new rooms without fuss or fanfare. There would be plenty of time for exploration in the days and weeks to come. Sleep was priority number one. We changed them into pajamas and Pullups, brushed their teeth, and tucked them gently into their new beds. I remember them staring up at us, confused and disoriented but too exhausted to complain. Bending down to kiss the downy soft skin of their foreheads, I forever marked the memory of this occasion in the quiet refuge of my heart.
I was shocked to wake up that next morning and find the children still sleeping. I had listened for the better part of the night to the hushed sounds of the house, napping in brief snatches in case Sophie or Peter woke. I had every right to be dead on my feet but instead I felt exhilarated, ready to plunge into the life and role I’d been longing for since Pat and I first met. I’m not sure what I expected – pouncing, screaming, general chaos certainly, but what I found that early morning was a stillness that belied my newfound status. With Pat still sleeping too, I decided to tiptoe downstairs and survey our depleted breakfast stocks. It felt strange being in the house without our dog Scout, whom we would board for another two weeks. Normally she shadowed my every move. Though the size of our family had doubled, I felt oddly alone as I rummaged through the pantry, finding nothing to eat accept cereal with Parmalot milk and instant oatmeal. In the stillness of the kitchen, I noticed the sky blue boosters already strapped onto our kitchen chairs, standing empty but ready for action. Like the car seats, we had installed and tested them before leaving for Russia. I smiled a little nervously with the knowledge that our quiet home was about to come alive with the noisy throng of children.
Before we bought in early 2002, a 93-year-old spinster, the last of her line, had been born, raised and died in our old stone house. Her death ended 250 years of continual residency by one or more members of the same Dutch farming family. How many decades, I wondered, had it been since the old plank floors shook with the patter of little feet, the high-pitched squeals of laughing children reverberating off the thick plastered walls? Too long, I guessed.
But change was coming. There was no misinterpreting the sound of heavy thumping I soon heard upstairs. Merely 26 pounds, Peter nonetheless walked as heavily as a lumberjack, an undeniable fact Pat and I recognized almost immediately upon meeting him. Thud. Thud. My son was up. Our life as a family was beginning in earnest.
My sister Patty was due to arrive from Atlanta in four hours. Since our own mother had died a few years earlier, she would be filling the expanded role of mother, sister, friend and all-important crutch. Sophie and Peter adore Patty because of the way she treats and loves them, but also because children are programmed to intuit from their parents who is good, who is dangerous, who will protect, or who is trustworthy. Patty exudes goodness and quiet confidence, and when I was little I wanted to be just like her. Although some might say we’re more different than similar, I do believe we bring out the best in each other, and I’m certain Peter and Sophie sense our closeness. When we’re together, we have this way of filling the spaces around us with laughter, happily retreating into the center of our shared, occasionally secret, and always silly experiences. I desperately wanted her to meet Sophie, and to watch and study Peter, without the benefit of Pat’s and my concerns or preconceptions. I suppose I was looking for her reassurance that our fledgling family would be okay; whole, healthy and in possession of all of the ingredients needed to grow and thrive.
By the time I ran upstairs to check on Peter, the whole house was awake. Pat was wrestling into sweats, greedy for a cup of non-instant, fresh ground coffee. I gave him a quick kiss and hug, and then followed the noise across the hall. I found Peter in Sophie’s room, touching her new possessions one by one with wide-eyed wonderment. Stroking her pink and yellow quilt with one hand as she clutched the blue elephant given to her by Carl and Tom in the other, I watched as she studied, mouth agape, Peter’s near reverent explorations from the quiet command post of her new bed. Furniture, rugs, rocking chair, wallpaper, books, closets, clothes, stuffed animals, drawers, and hampers: items commonly found in children’s bedrooms around the world but notably absent from Russian institutions for orphaned babies and toddlers.
After having them use the potty, Pat and I tried carrying the children downstairs but both insisted on walking. Sophie was particularly unsteady on her feet and was already covered in bruises from the collective effect of her newfound freedom. She didn’t want me to hold her hand on the stairs but I insisted. I counted one two three as we slowly stepped down, Peter’s footsteps pounding heavily behind us.
“Gera, Gera, Gera . . .” he repeated.
“Peter-Gera,” Pat suggested.
Since Peter had not stopped repeating his name, Pat cleverly decided to use this preoccupation to introduce the American name we had chosen for him. After the adoptions we began calling them “Gera-Peter” and “Katya-Sophie” but once home, we reversed the order in an effort to gradually drop the Russian familiar. At the time, I was convinced of the correctness of our decision to change their names, especially since German LoBrutto and Ekaterina LoBrutto don’t roll easily off the tongue, but now I’m not so sure. In the name of rescue and family, we stripped our children of every ounce of their former, tenuous identities. There’s no doubt they are forever Peter and Sophie now, their names imbued with our love to the same extent as would have occurred if we’d named them at birth. But still, it may have been an unwise choice. Their Russian names were the one part of their former lives we could have left intact.
Pat managed to make pancakes for breakfast thanks to a squirreled away box of Bisquick, and the children gobbled up every bite. I remember Pat staring at the two of them, happily belted into their new boosters at our breakfast bar, and noticing that the bags under his eyes were deeper than they should have been.
He was so tired. At 56, he was no longer a young man, and we had committed to an incredible, life-altering undertaking. Sophie and Peter were needy, not necessarily healthy, and undoubtedly carrying emotional and developmental scars that had yet to reveal themselves. They were also virtual strangers. I could see the self-doubt in his face but there was nothing to be done, at least not then. This was Sophie and Peter’s first morning home, and they needed us.
I needed them too. I was desperate to interact with Peter and excited to strengthen the fledgling bond I was cultivating with Sophie. Because we had read so many books about adoption and attended Dr. Aronson’s adoptive parenting classes, we were careful not to overload the children’s sensory systems with too many new toys. So I took out the same few Duplo blocks from Peter’s backpack and the doll and kitchen toys from Sophie’s, and placed them on the floor in front of the fireplace. Then I patted the rug to entice them to come toward me. My efforts were interrupted, though, because the kitchen door swung open and I found myself staring at my brother Mark, who was standing impishly in the doorway with a small duffle bag in hand.
“Facial,” he beamed, addressing me by one of several inexplicable nicknames he’s devised over the years. “Are these the kids?” I nearly broke down in tears when I saw him. Not only was Patty on her way, but Mark was there too. The older brother who terrorized me daily throughout my childhood was at that moment, and in my eyes, the sweetest, most welcome sight in the world. While we were still in Moscow, he figured out a way to finagle his impossibly busy trial schedule so that he could spend 32 hours with the kids and us. Grabbing Pat and I brusquely by the shoulders, he pulled us to him like a quarterback preparing to huddle.
“So what are we doing today?” he laughed. Peter and Sophie hadn’t moved a muscle since their new uncle appeared but they knew enough to stare, transfixed. In the way that big men can be surprisingly gentle, Mark untangled himself from us and made his way toward the children, bending down to their level and then ever so carefully lifting first Peter, then Sophie, into his arms. Any faint doubts I had concerning whether my family would be able to fully embrace our Russian children disappeared in that instant. The tears I’d been holding back flowed freely and with quivering voice I managed to yell shut-up to both Pat and Mark as they began teasing me about the waterworks.
Although I admit I’ve been known to sob without warning over the milk carton children, these tears were fully justified, and personal. I was tired and running on nothing but nervous energy. Pat was near shock too and showing signs of becoming seriously overwhelmed. Even though I always believed my southern siblings would hop on a plane at a moment’s notice if ever I truly needed them, the theory had never been tested. The surprise of watching my brother walk through our door made me realize how wonderfully important it is to be loved, truly loved, to be part of a family or circle of friends larger and stronger than yourself. Mark was standing in our kitchen, grinning like a kid at Christmas, and Patty was on her way. Pat and I could have survived those first few days on our own, but it was a great relief knowing we weren’t alone. Pat and I may have made a mistake changing our children’s names, but the gift of family is one I hope Peter and Sophie will always cherish and appreciate.
Patty pulled into the driveway in a Ford rental a few hours later, ushering in a second wave of energy and a necessary call to action. She was the only one in the house who had more than a week’s worth of bona fide mothering experience, and so she naturally assumed a commanding role. Groceries had to be bought, clothes and shoes that actually fit needed to be secured, and for some reason, the four of us decided that Sophie and Peter needed to have tricycles, immediately.
Patty and I would shop later that afternoon, once Sophie and Peter were napping. I remember being so proud of my children as I watched them interact with my sister and brother. Despite the complete upheaval they’d been made to endure, their resilience, with some notable exceptions, shined through in those first days and weeks at home. Sophie examined every square inch of Patty, looking in her mouth, her ears, her nose, even pulling apart strands of hair to study her roots and scalp. She had done the same to me in Russia and I was tickled to see the routine repeat itself on my living room couch.
Peter was indifferent toward my sister but mesmerized by Mark, whom he followed with great devotion. I watched as they built Duplo towers together and laughed when he showed Peter how to make them crash, causing my new son to scream at the top of his lungs and wag an angry finger in Mark’s direction. It was the loudest noise Peter had made since that first night in Moscow and it caused all of us to stop and take stock. It was also an early clue as to his absolute need for external order and predictability.
One of my favorite memories of those first days home happened on the same night that Patty and Mark arrived. After putting the children to bed, which was shockingly easy as they showed no inkling of being afraid as well as no inclination to wander, we set about unpacking the large Fischer Price tricycle boxes that Patty and I had purchased at Toys-R-Us earlier that day. We planned to spend no more than forty minutes on assembly so that we could devote the rest of the evening to talking about our trip and just enjoying each other’s company. What we didn’t take into account was the fact that my siblings and I are lawyers and Pat is a fiction editor, which means the four of us are largely devoid of everyday, useful skills. It didn’t help that the directions were the size of a hymnal and each box came with six bags of plastic nuts, bolts, and other integral yet mysterious parts. Not even the pedals came preassembled.
In no time at all, forty minutes became four hours and the living room was still strewn with plastic parts whose bright colors flickered ominously in the fireplace light. For reasons that remain unclear, I decided that smores might improve our chances of success and so I searched for the necessary ingredients and a few spare coat hangers. I don’t know if it was the smores that did it, but eventually we finished, a few beer bottles littering the coffee table, somewhere around midnight. We were exhausted, stiff, and punch drunk, but we stood united and humbled in the presence of our awesome, and slightly sticky, accomplishment.
I awoke smiling the next morning with the memory of the previous night’s escapades. I’ll never know why we decided tricycles were necessary for Sophie and Peter to begin their new lives, especially since their legs were too weak to even pedal. But the trikes were downstairs, ready and waiting to be used, and hopefully without serious defect in assemblage. The thought of taking our children to the emergency room on our second whole day home was not one I savored.
Pat was the first to greet Peter that morning and was therefore the first on the scene. In the months and years to come, we would grow accustomed to the ritual though never the shock. Pat found Peter sitting squarely in the middle of his bed, wearing his pajamas and peering serenely about the room. He had defecated on one end and urinated on the other. At three years three months, his caregivers told us that Peter was completely potty trained, day and night. True to their word, he had not had a single accident since becoming ours. That morning was no exception. Upon inspection, Pat discovered that his pajamas and underpants were dry and completely unsoiled. The quest to unravel the mystery of our son, his mind, his motives, his fears and damaged heart, was officially underway.
February 7, 2010
Tags: adoption, attachment, autism, Dr. Jane Aronson, fetal alcohol, international adoption, learning disability, post-institutional autism, post-institutionalized
September 14, 2007. I just read a news article about a sparsely populated region near the Volga River that is giving away free cars, money, refrigerators and other prizes to couples who procreate now and give birth on June 12, Russia Day. Workers who signed up for this contest, now in its third year, were given a half day off on September 12 to boost their chances of winning. President Putin claims Russia’s falling birthrate is its most acute national problem and he applauds the creative genius of the regional governor. I have a problem with this. Quite a few, in fact. Foremost has to do with the host of overcrowded orphanages generously scattered across the country, institutions in such poor repair they are crumbling on their own foundations. In late 2004, when we adopted, over 600 children under age 4 were living in the baby home in Birobidzhan, a city of approximately 220,000 people. Extrapolating this figure to age 16, the age of emancipation, means there must be roughly 2,500 institutionalized children in Biro at any given time. There is such a shortage of jobs, food, and services that parents give up their children because they know even the skeletally staffed orphanages can better provide for them. Alcoholism is so prevalent in Russia that health officials don’t ask pregnant women about their drinking habits because they don’t want to compile the sobering statistics. What percentage of Russian children born on or around June 12 will end up alcohol exposed, neglected, malnourished, learning disabled, and residing in an orphanage? I’m not sure the free car is worth the price. My son often doesn’t know right from wrong, has severe memory deficits, may never understand the relationship between cause and effect, is learning disabled, lacks impulse control, is devoid of judgment, suffers from multiple physical disabilities, and has a whopping 60% statistical chance of being arrested between the ages of 12 and 21. Sophie is doing well but even she carries telltale, perhaps permanent, signs of her early institutionalization. I will always love Russia because my children are Russian. But I still wish Peter was whole, so he could grow with the potential God intended rather than stumble through life impaired and disoriented, a tragic symbol of everything wrong in his country of birth. Perhaps, just perhaps, the national crises that seed children like my son should be addressed before Russia gives too many more free cars and refrigerators away.
Chapter 15: We’re Home (Almost)
Lunch, homemade cake and a beaming Galina awaited our new family when we arrived back at the apartment after the hearing. But despite the festivities, picking up the children, seeing them for the first time since they were “ours”, I remember this time as quiet and peaceful. Sophie had claimed every fiber of my being the instant our eyes met in August and although my commitment to Peter was more contemporary, he already was mine too. I had made a resolute decision about my new son, having sealed our fates together during a restive night less than 48 hours earlier. Turning back was neither an option nor desire. Pat and I were happy, certainly, but we were mostly relieved. We had many more hoops to jump through before going home, including several days in Moscow, but from this point forward none of our decisions, fears, misplaced words or misunderstood actions could in any meaningful way jeopardize the formation of our family. We had reached the finish line. Peter and Sophie were ours.
But it didn’t quite feel that way at first. For one thing, there was no room for the children to stay at Galina’s so they remained at the orphanage and on the same strict schedule until the morning we picked them up at 4:30 am for the drive to the Khabarovsk Airport. The night of the adoptions I was keenly aware of how incorrect it felt to lay in bed with Pat knowing our children were still being made to fall asleep amidst more than a dozen other toddlers, most of whom, Peter and Sophie included, had never known the comfort of being kissed goodnight.
The authorities waved the post-adoption ten-day residency requirement, which enabled us to leave Birobidzhan once the children’s Russian passports, new birth certificates and adoption certificates were ready. Ten days in the region post-adoption were suddenly compressed into two, causing us to become a flurry of activity. We wanted to make a contribution to the orphanage, and had intended to donate cash, but the women in the white coats told us that money had to be declared and that most would be eroded by taxes and “less official” fees. They instead suggested we buy snowsuits, jackets, mittens, boots, and hats at the store because these items could not be easily tracked. Tamara took us and we bought more than we could afford. We nearly emptied out the entire children’s section, which was smaller than our kitchen. We also bought brightly painted chairs that were locally made and that we’d seen in abundance at the orphanage as keepsakes for Peter and Sophie. Other than the grocery store, it was the only store in town and therefore the only place to buy clothes, shoes, books, toys, bedding, household appliances, cosmetics or baby supplies. Even though more than 200,000 people live in Birobidzhan, we were its only customers that day.
Our next stop was the farmer’s market, which was busy and boisterous. Pat kept whispering for me to keep a firm hold on my purse because he didn’t like the vibe coming from a scattering of young men who patrolled the aisles with heads bent and arms shoved deep into heavy canvas jackets. He needn’t have told me. His body language changes so abruptly in these instances, reverting with a flash to his Brooklyn-bred street smarts, that I read his thoughts with a single glance. We quickly bought a bushel of bananas big enough for King Kong to enjoy, at least 80 bananas, and as much other fruit as the three of us could carry. We took great pleasure in distributing our bounty when we returned, to the mostly nonverbal toddlers who nonetheless had mastered how to say “Mama” and “Papa” and who still clamored for our touch and attention. It was both wonderful and profoundly sad to watch these children’s faces light up and their mouths water over the prospect of something as simple as a piece of fruit. There was nothing they took for granted.
It was also funny and wonderful to marvel over the way Sophie began exhibiting proprietary behavior in our presence. To this day we don’t know exactly what she was saying, but whenever any of the children in her group showed us more than casual interest, she would furrow her brow and wag her finger in the direction of the small offender. She would then fire off a maelstrom of verbal warnings so caustic that any children brave enough to have remained in the wings scattered in retreat, immediately. With clutched fist and steadfast determination, she also had no trouble establishing ownership over the pink little gingham pillow with our picture in the sleeve. She carried it everywhere she went and according to her caregivers, whose eyes sparkled with the telling, refused to relinquish possession no matter what the circumstances, including using the potty. She behaved like a crazed old Babushka rather than a barely two-year-old child. We loved her for it, and still do. Immensely.
That night we sat in the easy company of Galina, Bogdan, and Sergei, another grandson who stopped in frequently, and watched their favorite Russian soap opera, which had become our custom. There was nothing else to do. We couldn’t visit the children and roaming the pitch-black streets of Birobidzhan after dark, which by late October was somewhere around 3:00 p.m., was not a safe option. We had brought books and a portable chess set but were too exhausted and mentally depleted by this juncture of our trip to focus on anything that required even minimal mental acuity. The wardrobe in the soap reminded Pat of 1974 Staten Island on a Saturday night. We knew it was time to leave when we earnestly began looking forward to the next episode, checking our watches to make sure we didn’t miss the kickoff.
Peter stopped screaming at me about the time we were ready to say goodbye to Tamara, Galina and the orphanage staff. He even begrudgingly allowed me to sit near him and interact with the blocks and plastic truck we bought at the store and left behind for the orphanage. But I still couldn’t interact much with him. If I picked him up and sat him near me, he’d bounce up and run over to Pat, his short little legs moving faster than what seemed anatomically possible. But he didn’t scream. He merely grunted. I interpreted this transition as progress and cheerfully continued my strategy of inching my way toward intimacy, or at least casual contact, often with food in hand as collateral.
Sophie too began loosening up around this time. Galina’s living room could be closed off with French Doors and we took advantage of this design to contain our new cubs. They had never been in a home before and for Sophie, everything was worthy of exploration: the furniture, the kitchen, the television, Galina’s fish tank, her knick-knacks, the light sockets. The toilet topped the list of curiosities though, as she had never seen one. The orphanage used pots lined up in rows for toileting, one child next to the other. The entire contraption, especially the flushing mechanism, fascinated her and it wasn’t long before we realized she didn’t have to really go peesit every fifteen minutes.
But even confined to a single room, Sophie was a challenge. What became obvious quickly was that she had long ago mastered the art of playful defiance. She understood the limits we had imposed, she just didn’t agree with them. And the mischief in her eyes, the twinkling intelligence that belied her tender age, was difficult to ignore and even more difficult to curtail. We would soon learn that we weren’t the only ones under her spell. People fell victim to her charms wherever we went, and still do.
What wasn’t so obvious at the time, but now stands out as clearly as fireflies against a night sky, was Peter’s complete lack of curiosity about his new environment. I was chasing Sophie around like a madwoman, convinced her frenetic activity would result in instant and tragic death before we ever got home, but Peter barely budged. All he wanted to do was sit with his blocks or look at a book with Pat. But this behavior didn’t strike us as necessarily strange back then. After all, we were strangers, we didn’t speak Russian, and we were planning to whisk him away from the only home he ever knew. We thought he was scared and tentative, which I’m sure he was. Though we’ve seen vast improvement, we understand now that Peter tends to behave this way no matter what the circumstance or environment. He’s uncomfortable navigating the contours of new experience. Rather than struggle to integrate, he retreats into the comforting spaces of his own thoughts or the rituals of repetitive play. It took years of intensive intervention to coax him from this mindset and even today, constant vigilance is required to keep him from withdrawing.
When it was time to leave Birobidzhan, we thanked and hugged Galina, promising to send pictures and updates once we were home. I don’t remember whether we went to bed that night but I’m guessing we didn’t. Tamara took us to the orphanage at 4:30 a.m., where the children were already bundled in their new clothes and jackets, standing with two women beneath the shelter and light of the entryway’s concrete overhang. Since we knew we were leaving before dawn, we said our emotional goodbyes to the women at the orphanage the night before. Two of Sophie’s caregivers had rattled off instructions for us to keep Sophie on schedule and content, tears overflowing while they competed to stroke her tiny back. One of the doctors insisted we take a tube of cream to ease Peter’s itchy skin. They were decent, basically kind people who were forced to look after Russia’s discarded babies under conditions of extreme poverty. Although I was moved by their affection, I also was invigorated with the knowledge that Peter and Sophie were finished with orphanage life. Peter had spent all but 5 of his 39 months in an institution and Sophie, who was 27 months old, had joined him before her first birthday. They had served their time.
Both children were dazed, confused and exhausted the entire bumpy trip to Khaboravsk. Our driver dropped Tamara at her apartment on the way out of town and I watched her wave to us as we began our journey home. Our translator, who in the process became our friend, was gone. Until we reached Moscow, where Sergei awaited, we were on our own, relying on gestures and the few Russian words we had committed to memory as our only means of communication. Sophie sat on my lap and Pat held Peter. There was no room for car seats much less our luggage, which was tied to the roof with lengths of scratchy twine. When he wasn’t dozing, Peter repeated his Russian name the entire ride while Sophie stared, unmoving, out the window. Listening to the eerie rhythm of this cadence, the rise and fall of Gera Gera Gera against the clanging backdrop of the car, I worried whether our new son was trying to hold on, somehow, to his former life, even his very identity. The idea made me shudder.
The plane ride from Khabarovsk to Moscow was uneventful, thanks to a young Russian girl who appropriated Peter, drawing and otherwise entertaining him for most of the flight. Sophie stayed content as long as I kept the Goldfish and Cheerios flowing her way. Neither of them slept during any portion of the 10-hour flight and by the time we arrived in Moscow, they’d been awake, except for momentary catnaps, for almost 24 hours. Their bellies were full, they had their first lollipops – for take-off and landing, found the airplane ride exciting, and were uncharacteristically compliant for children their age. But the poor babies also were dead on their feet.
For me, the most challenging part of this segment of our slow progression east had to do with our flight’s five-hour delay and the prolonged agony this inconvenience caused. Specifically, I had drank too much instant coffee at Galina’s in the middle of the night and desperately needed a bathroom break by the time we arrived at the Khabarobsk airport, which was somewhere around 8 a.m. But I couldn’t figure out how to use the public toilets in the airport and I was unwilling to experiment. The lavatory consisted of several holes in the ground surrounded by slippery filth. Indented footprints flanked the sloping sides, apparently to coax hapless users like myself into the correct position. I envisioned me sliding inexorably into the unspeakable abyss and then spending the next twelve hours living with the aftermath on my clothes, skin and hair. No thank you. Even if it meant keeping my legs crossed for 13 hours, which it did.
The four days we spent in Moscow were exciting, scary and in every way novel. The Presidential Hotel is more than accommodating of newly adoptive parents and we were happy to find two cribs set up and ready to go when we opened the door to our room, which was really a suite. It was the first night we would spend together as a family and I had a raging yeast infection, which for me, was a first. I had ignored the mild symptoms that started to develop our last day in Birobidzhan. With so many important things on my mind, and having no idea how bad this kind of problem could get, I simply dismissed the warning signs as an aggravating nuisance. Boy was I wrong. The culprit turned out to be the powerful antibiotics our doctor had us taking throughout the second trip, to stave off giardia and any other nasties. By the time we reached the hotel room in Moscow, sleep-deprived and with two bewildered and exhausted toddlers in tow, I was desperate for intervention. Pat was uneasy about me venturing into the Moscow night by myself, but there was no reasonable alternative.
Trying to explain to the women at the front desk the nature of my problem was about the funniest and most exasperating experience of my life. The word yeast in Russian has no meaning unrelated to bread-making. After many rounds of passing the dictionary and using gestures not suitable for polite company, a eureka moment finally occurred and they understood what I needed. These otherwise stone-faced women giggled like schoolgirls as they wrote down the address of the nearest pharmacy and showed me on a map how to get there. It was past midnight, I hadn’t slept in God knows how long, Pat was no doubt panicking in the hotel room by himself with the kids, and I had no choice but to venture into the Moscow night in search of over-the-counter feminine relief.
Luckily, the directions were good and I arrived at the pharmacy after a fifteen-minute walk. Then I encountered the next hurdle: the pharmacist didn’t understand what I needed either, and unlike American drugstores, customers in Russia do not have direct access to nonprescription drugs. Products are locked up and out of view. So I started my ridiculous pantomime routine all over again. Eventually a tall, elegantly dressed businessman walked in, saw me gesticulating like a crazed woman, and asked in fluent English if he could help. Ordinarily I would not have pulled an innocent into such a private matter, but I was desperate.
“I need something for a yeast infection,” I said. Luckily I was too exhausted and uncomfortable to worry too much about his embarrassment either.
“Uh, oh. Well, yes, of course. I can help with that.” I thanked him for his kindness and apologized for the awkwardness of the situation. He took my place at the counter and explained to the pharmacist what I needed.
I might have emerged from the store with some semblance of dignity intact if the humorless pharmacist hadn’t then decided to ask the man to translate the package directions. He really was managing well until that point, but this taxed his Samaritan attitude well beyond the tipping point. Bowing his head to review the instructions, he slowly looked up at me with what can only be described as horror.
“I simply cannot do this, Miss. I am quite sorry. But I cannot read these words to you. I just cannot.” His face was beet red and his eyes implored me to release him from this unbearable task. He continued, “You can manage from here on, right Miss? I’m sorry. Goodnight and good luck.” And with a slight bow and what I thought might be the click of his heels, he disappeared into the welcoming anonymity of the Moscow night.
When I entered the hotel lobby, with white paper bag in hand, I was greeted by the sounds of the reserved but jubilant desk clerks cheering my success. I thanked them hastily and then raced to my room and waiting family. Now the middle of the night, Peter and Sophie were still ambulating like Zombies on parade. I was still working off the adrenalin boost fueled from the pharmacy adventure, but Pat was out of juice. I found him slumped like a rag doll in an armchair, supervising our children in a semi-conscious, unshaven and close to delirious state.
We spent the rest of that night with all the lights on and Peter thrashing between us in the big king sized bed. He had screamed with terror every time we put him in the crib or attempted to dim a light, so we thought bringing him into bed with us would help. We were wrong. Sophie fell asleep in the crib after methodically rocking herself for 45 minutes in spite of the considerable racket. Flat on her back with arms stretched toward the ceiling, Pat and I watched helplessly as she swung her body from left to right, the muscles in her neck taut and twisted. She was not ready or willing to receive our comfort.
Despite how exhausted we were the next morning, the prospect of eating breakfast as a family held great appeal. We watched in amazement as Sophie and Peter, regardless of the fatigue and trauma of the last 36 hours, ran with abandon down the long hall of our floor, falling, rolling and generally howling with delight. From their expressions, we guessed they had never experienced any real sense of personal freedom before. In fact, just like that first morning in the hall, Sophie and Peter would continue to react with complete and utter delight in response to the simplest pleasures for the entire first year they were home. The gift of a balloon, for instance, brought shrieks of joy, as did the sight of hamburgers, balls, television, bananas, frogs, honey, open spaces, milk, grass, and even their double stroller.
The breakfast buffet at the Presidential provoked a truly unforgettable feeding frenzy. Eggs, crepes, bacon, sausage, milk, orange juice, oatmeal, fruit, breakfast potatoes and French toast. They devoured everything in sight and then lifted their plates for more. Sophie ate three times as much as Peter, which is saying something because he ate more that morning than he’s ever eaten since.
The rest of our time in Moscow was spent getting mandatory medical exams for the children at a Russian clinic, making sure the U.S. Embassy processed their visas correctly, and generally tagging along with Sergei as he skillfully navigated the remaining post-adoption paper chase. In between appointments we did some sightseeing and bought some incredibly expensive clothes for the children. The clothes I picked out prior to the adoptions, mostly 3Ts and 2Ts, hung from Peter and Sophie as loosely as potato sacks. We wound up buying Peter a few outfits in size 18 months. Sophie easily fit into size 12-month clothes.
Three other memorable events happened while we were in Moscow. The first had to do with bathing. Russians shower, even their babies, because they feel bathing in a tub full of water is an unclean practice. Sophie and Peter were so terrified of the water when we first put them in the tub, screaming like teenage victims in a horror flick, that I’m surprised someone on our floor didn’t call security. But then in a last-ditch effort to salvage the experiment, I splashed my hand in the water and gently splashed their bodies. Sophie paused for one second, considering the implications of this act, and then we watched with amazement as her features transformed and she surrendered, completely, to her childhood instincts. Attack! The ensuing water fight was a moment that will be forever imprinted on my brain. Blood-curdling screams of terror became peels of laughter and Pat and I were drenched and covered in bubbles by the time we wrapped our two happy and clean toddlers in warm towels. Bath time was never a problem again.
The next unforgettable moment occurred at a Moscow McDonald’s, where Sophie caused a considerable crowd to gather. We ordered Happy Meals for the kids but they didn’t know what to do with them. They ate their apples but their hamburgers went untouched. Sergei tried to coax them into eating but they just stared blankly. We finally gave up and began eating our own meals. As soon as one of us lifted our burgers to our mouth, Sophie picked hers up, staring at it curiously. It then occurred to us: they had never had a sandwich before. They either didn’t know it was food (yes, I know, it was McDonald’s) or they didn’t know how to approach it. So Pat picked up Sophie’s cheeseburger and helped her position her infant-sized hands on either side. Then all three of us illustrated the chomping procedure, looking ridiculous I’m sure. And that’s all it took, at least for Sophie. Squeezing both sides of her cheeseburger so hard that bits of grizzly meat squished between her fingers, she took a single bite and paused. Her eyes moved back and forth with measured deliberation and then an impish grin, one of her hallmark characteristics, slowly emerged. She ate the rest of her burger, which was nearly the size of her head, with such gusto and intensity that people began gathering around us in amazement. Half act, half genuine enjoyment, she played to her audience like a seasoned professional, relishing all the while in the glow of the spotlight. Though we never convinced Peter to eat anything else that day, Sophie had seen the face of God, and her name was American Cheeseburger.
To this day, Pat and I refer to the last noteworthy event as simply The Fight, which occurred in the late afternoon of our second full day in Moscow. We were taking a well-deserved break in our room’s big, overstuffed chairs, watching contentedly as the children played and continued to explore their new environment. Sophie played kitchen with her doll and the plastic food, dishes and pots we bought for her while clothes shopping in the fancy Moscow department store. Peter spent his time stuffing everything he could into his new backpack: Duplo blocks, books, cars and trucks, hotel magazines, water bottles, action figures, and even wash clothes. Nothing was too banal for inclusion. When finished, he’d hoist it onto his back, circle the perimeter of the room, dump the contents out, and then start the process anew.
Although Pat and I exchanged worried glances over Peter’s repetitive, ritualistic play, neither of us had the energy to intervene. Instead, I asked whether Pat would get me a pillow from the couch to prop behind my back, which had begun to ache. Both of us were unprepared for what happened next. Peter stopped what he was doing, went over to the couch, and brought me the pillow. He understood what we were saying! What a remarkable moment!
Our joy and surprise over this revelation was soon dwarfed, however, by what began as a simple breach of toddler territory. While praising Peter for his brilliance, Sophie seized the opportunity to snatch what had become a prized book from his otherwise closely guarded backpack. Until that point, neither of them had paid the slightest attention to the other. But all that changed when Peter discovered the missing item and in Sophie’s hand. The boy who we’d begun to worry was completely passive suddenly exploded with a litany of verbal outbursts. Sophie followed suit. With her brow knit in consternation, and her fist shaking savagely in Peter’s direction, she came back with a barrage of her own. The indecipherable argument continued, with both of them charging the other, fists drawn and chests puffed, for a considerable length of time. Pat and I watched in stunned silence as this unforeseen drama unfolded. To this day I don’t know whether we chose not to intervene because the fight wasn’t physical or because we were simply in shock. Regardless, the chaos stopped as suddenly as it began. Sophie and Peter had reached some sort of understanding. Although far from kismet, they no longer ignored each other, and in ways small and large, began acting like the siblings their adoption papers declared them to be.
Overall, our time in Moscow was lovely. The days were crisp and clear and we could see the children’s health improve on an almost hourly basis. Sophie’s skin became less translucent, Peter’s angry red rashes began to subside, and the dark blue bags under their eyes diminished by the minute. Breakfast continued to be a show worthy of charging admission, and running the length of the long halls a favorite daytime activity. At night we’d read to them in the big king sized bed and then let them watch a Russian cartoon with the lights dimmed ever so slightly. Peter never slept well in Moscow but at least the screaming lessened.
In fact, the only real troubling part of our stay revolved around our children’s intestinal health. Although we at first thought the change in diet was to blame, the frequency, volume and room-clearing odor made us rethink our diagnosis. I frankly had never smelled anything so foul in my life, and it was coming from both of them. But without additional symptoms, nausea, cramping, fever, or any other kind of distress, we decided the problem could wait until we got home. Having already obtained their medical clearances, we didn’t want to jeopardize our departure date.
With Sergei serving as our guide, translator and companion, we spent our last afternoon in Moscow exploring the city, which was both exciting and sad. Moscow is every bit as alive and vibrant as New York City, Los Angeles or Boston, with all the noises, energy and pulsations, but there is a crucial difference. The disparity between the wealthy Muscovites and the residents, not to mention the rest of the Russian citizenry, is abundantly apparent. The ostentatious displays of wealth in Moscow make American vanities seem almost modest by comparison. I found it difficult to reconcile the abject poverty my children had experienced with the incredible brand of nouveau riche consumerism on constant exhibit in the streets of Moscow. I truly hope the country one day settles on an economic and social model that allows capitalism to flourish and wealth to accumulate, but in the presence of a healthy middle class, and without so much graft that basic human rights are overlooked.
I was never more aware of the depths of Russia’s troubles than when I stepped on the plane that would take us home. Sophie and Peter had experienced unimaginable hardship in their first, most crucial years, and theirs were the faces I saw when I reflected on the failures of their birthplace. Pat and I were confident we could change their health and living circumstances for the better. What was less certain was the impact we’d have on their psyches, our ability to heal the damage to their developing brains and hearts, damage that was the result of neglect, abuse, and deprivation; the hopelessness, and in some ways, indifferences, of an entire people.
I said goodbye that morning to Russia, grateful for our children and poised for the adventures and struggles ahead. I was ready to go home. And I would not be looking back.
February 2, 2010
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
September 10, 2007. I lay awake wondering how long we’ll be able to keep Peter safely home with us. My thoughts race in the quiet hours before dawn, when worries and fears amplify beyond ordinary bounds. Our son lies and steals and sometimes destroys with an appetite that belies his tender age. The latest is that after ten days he finally confessed to throwing Sophie’s prized birthday presents in the trash. I bought replacements to surprise her but Peter wound up the more surprised. Looking like he’d seen a ghost, and making what lawyers call a statement against interest, he stared at the toys and shouted, “But they gone away in the garbage!” Sophie is too often the object of Peter’s resentments, and though I’m glad he was caught in this particular deceit, I worry that nothing will change. He seems organically incapable of learning from his mistakes. I’m mindful of the time he hurled a fist-sized stone at close range, striking her on the temple with deliberate aim. He was restive and angry the remainder of that day, blaming Sophie, incredibly, for the injury he caused as he watched me ice the swelling knot on her head. He has a fantastical ability, when ensnared, to recast himself as the victim, the misunderstood innocent who should never bear blame. I’m tired of the lecturing, the picture drawing, the social stories, the role-playing, the disciplining, the resort to yelling and the cycle that begins anew when none of the latter works. To a large extent, Peter is right. He is a victim. How can he be held accountable if his brain won’t allow him to learn from his mistakes? Who did this to him? Was his biological mother a teenage binge drinker or had she graduated to a more steady intoxication? What other wrongs has Peter suffered, wrongs so horrible that his psyche is imbedded, indelibly, with feelings of mistrust, contempt, and at times, unchecked rage? Alcohol exposure alone can’t account for all that’s skewed inside his brain. My damaged child holds me hostage, just as Russia itself holds him in the iron-fisted, immutable bonds of alcohol damage and institutional neglect. Escape isn’t possible. I belong to Peter and he to me. And so I continue to love him, knowing full well that love alone may not be enough. For my daughter’s sake, I must remember that Peter acts on uncensored impulses, some of which can be meant to harm. Lest I forget, Sophie gives me her unicorn to sleep with tonight, assuring me as we kiss sweet dreams that its magic horn will keep me safe.
Chapter 14: Adoption Day
My parents were married on October 25, 1948, in St. Petersburg, Florida. They remained for the most part happy and in love for the next 46 years. On October 25, 1994, the first time my mother spent her anniversary as a widow, my niece Haley was born. A day destined to aggravate an open, grieving wound transformed into a celebration of family and possibility restored. The fact this squawking baby resembled my mother and would later become the apple of her eye was another blessing that with time would joyfully reveal itself. On October 25, 2004, three and a half years after my mother’s death, Pat and I began our family in a colorless courtroom in Birobidzhan, Russia. For my family, this date has always resonated with hope, celebration and new beginnings. I never doubted it would be different for Pat and me, and so despite our being halfway around the world, I awoke that morning feeling the enveloping presence of family, their warmth, comfort and companionship a welcoming contrast to the bleakness of our surroundings.
My greatest hope, both then and now, was that we could in turn bestow this gift, this sense of belonging and place in line, to Peter and Sophie. So as I dressed that morning, rehearsing answers in my mind to questions about my suitability or desire to parent, a sense of calm emerged. I realized that Peter and Sophie were already a part of our family and just waiting to go home. They felt as much a part of me as the memories of my brother singing White Wedding at our reception, or the churning sensation of riding in the backward-facing seat of my mother’s station wagon, even the autumn afternoon in Tallahassee that I learned my father had terminal lung cancer. These children were already woven into the fabric of who I was, and who I might one day become.
I clung to this realization like a rudder to help steady me through the next several hours. At the appointed time, Tamara arrived and drove us a mile or two down the main road to the courthouse, which was distinguishable from any other building in Birobidzhan only in that it enjoyed a more official-looking façade and a clearly marked entryway. As with other buildings we encountered, whether official or otherwise, the concrete on the stairs was disintegrating and the handrails offered a minefield of splinters just waiting for purchase. Inside, a number of blown-out light bulbs created a dappled glow to the otherwise décor-less halls. Tamara led us around two or three corners and then asked us to take a seat on a bench next to the courtroom door. She was clearly not worried about the impending hear. Despite what I had read and watched about the topsy-turvy nature of Russian adoption proceedings, how judge’s can and do make unexpected, even arbitrary and devastating decisions, the vibe that day was matter-of-fact and therefore strangely reassuring. We eventually were invited in and took our seats on either side of Tamara in the front of the courtroom. Two female doctors wearing white coats and one other orphanage staff member sat directly behind us. A stenographer was present too. We recognized the one doctor because she was the woman who had taken us around to meet the three boys at the end of our first trip. Through the whole torturous process, she had treated us with kindness and compassion. It felt good to have her there.
Unlike the rest of the building, the courtroom was sparkling clean and brightly lit. Except for the peculiar jail cell that was located to the left of the judge’s bench, I found it completely ordinary. Tamara explained that defendants must sit in locked cages during their trials. In Russia, it seems the presumption of guilt is a difficult hurdle to overcome. The lawyer in me was still contemplating the obvious differences in our legal systems when the bailiff walked in and directed us in Russian to stand for the judge as she walked in and took her seat behind the bench. She was a plain and sturdily built woman in her fifties, and it was clear she orchestrate these proceedings in her sleep. An unceremonious rap of her gavel and the hearing was underway.
The orphanage representative read into the record the case histories of first Sophie and then Peter: their birth histories, social circumstances and the reasons they became wards of the state and were unsuitable for domestic adoption. Even though I knew this was part of the Russian adoption proceedings, the whispered translation of these dire reports, the extent of poverty and deprivation that our children had endured, the defects of mind or body officially alleged, was difficult to endure. This was true even though I knew the sole reason the speaker was making the case, that Peter and Sophie were of no value to the Russian people, was so they might lead the kinds of lives she dared not wish even for her own children.
The judge then asked Pat to stand and approach the bench. Pat answered soberly in response to a number of questions and then I stood and repeated the process. How could we give two needy children the individual attention they each required? What was the state of our finances, our views on education? Did we have proper support to help us through what would undoubtedly be a difficult transition?
After that, the judge asked me to describe Sophie in my own words. Amazing, inquisitive, beautiful, mischievous, headstrong, smart, funny and enthralling. I said all these things and more. “And Peter?” she asked. I held my breath for a moment and stared at my shoes. The moment of truth had arrived. I didn’t know whether the judge was aware of the circumstances that brought us to Peter or was on board with the relaxation of procedures that was clearly occurring on our behalf, but I didn’t want to lie. I didn’t want the start of our family to begin with fabrication and deceit.
“I don’t know him too well, yet,” I said. “We came to Russia the first time to meet Sophie and another baby who turned out to be very ill. We had to say no to him and after we got home, our agency told us about Peter. I hope you already know this.” My heart thumped inside my chest and I couldn’t bear to meet Pat’s gaze. I could see the judge rifling through paperwork and I was afraid to keep on speaking. After a torturous minute, the judge looked up, nodded gravely, and waved at me to continue. “He won’t come near me unless I’m feeding him. He seems to like my husband. I think he’s afraid, which I understand. He’ll come around. He’s beautiful and we want him. I want him.”
And then she asked me to sit down. I was shaky but holding my own until I felt Pat’s physical presence, and then the tears began. He has this profoundly kind way of absorbing my pain, taking it wordlessly as his own, without fanfare or complaint, so that my burden is lessened. To this day I honestly don’t know whether those tears came from the enormity of the moment or the awareness of how precious my life with Pat is.
Tears of worry and relief soon turned into tears of genuine laughter when the three orphanage women stood up at the judge’s request and began describing Sophie’s personality. “There is no one else like her,” Tamara translated. “She is naughty, very naughty,” one of them said. “The mama and papa must not be afraid to discipline her!”
And with that suppressed waves of giggles spilled forth from all three women, their hands reflexively and in unison rising to cover their mouths. “We are sorry,” they sputtered in tandem. “There is something special about this child. She’s a good girl. A very good girl.”
The hearing part of the proceedings ended on that note and the judge excused herself for deliberations. The mood in the courtroom remained light. I was curious about why the judge hadn’t asked the orphanage staff about Peter, but having already said more than what was probably prudent, I decided to keep my mouth shut. Tamara kept us occupied during the ten minute or so wait by discussing our afternoon plans with the children and how we intended to celebrate. Because Sophie and Peter were too young to participate in the adoption decision, they had stayed behind at the orphanage. She knew we would be anxious to see them.
The three of us spoke in hushed tones, Pat and I instinctively assuming the quiet cadence of Tamara’s manner. She reassured me that my honesty about Peter had not been a mistake and that all was well. I took comfort in her words despite the fact that the emotion in her eyes betrayed her soothing tone. Early during our first visit Pat and I had guessed there was a deep and penetrating sorrow inside Tamara that her eyes could never quite conceal and that had nothing to do with us. Though I barely understood it, I came to recognize this melancholic trait in the faces and expressions of many Russians, Peter included.
Before long the bailiff reappeared and we were anxiously on our feet again, watching the judge as she briskly walked, head bowed, toward her place behind the bench. The stenographer shuffled some papers and then gave a slight nod toward the judge, which must have been her cue to proceed.
“Mary Evelyn Greene and Patrick John LoBrutto,” she said, in halting but clear English. “The married couple residing in Kingston, New York, and who are citizens of the United States of America? You are now the legal parents and guardians of the minors known as . . .”
And with that, the judge stood up, walked around the bench and over to where we were standing, and gave me what may be the most hearty, memorable, and unanticipated hug of my life.
Pat’s and my quest to adopt two orphaned children was finally over, but my journey toward becoming a mother had only just begun.
February 1, 2010
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
September 7, 2007. The kids and I are in the diner in Red Hook, having lunch together as a special treat because school dismissed early, at 11:45. Peter is doing well in his new PEACCE class but the effort required to maintain control, to cope with the new routines and expectations, leaves him few reserves by the time he gets home. There is nothing unusual about this; parents of autistic and other developmentally disabled children often report this phenomenon. But I need to readjust. I’d forgotten just how difficult this period of transition could be. He’s rolling his neck at the table like a drunken bobble-head, making sure I notice as he feigns oblivion. When I ignore him, he switches to a refrain of “eggs are like eggs are like eggs are like eggs are like BIG eggs” until the sheer monotony of his echolalia overtakes me and he succeeds in breaking my measured silence. “STOP NOW!” I demand, teeth clenched. Peter laughs. He’s in the mood to celebrate my crumbling composure, a fact that both demoralizes and infuriates me on days like these. I already warned him twice I would squeeze his ear, a handy, covert correction I save for public places, if the nonsense didn’t stop. But he beats me to it. “I squeeze my own ear, Mommy!” And he does. He gleefully squeezes so hard he screams. The pain surprises him. Sophie shrieks, “I didn’t expect that!” I’m astonished too. I have a child who happily will hurt himself to get a rise out of me and anyone else who happens to be watching. I want to be positive, I really do, for Sophie and Pat, and especially for Peter, but some days it’s hard. Some days I don’t know how long, or for how many years, I can keep this up.
Chapter 13: Russia, Part II
We flew Aeroflot to Russia for the second time on October 22, 2004, which turned out to be more comfortable and every bit as hospitable as Delta Airlines. We also changed hotels, opting this time to stay at the President Hotel in Moscow rather than the Renaissance. We had heard from several couples that the rooms at the President were larger, more comfortable and more accommodating of adoption families. Slowly but surely we were learning that American wasn’t always preferable, at least when it came to traveling in Russia.
The little boy who so loyally thrust the picture of his future parents into my face at the orphanage was staying in Moscow, at the President Hotel, with his baby brother and new parents, Cheryl and Peter Barnes. The formal adoption proceedings behind them, the Barnes still had several hoops to jump through before gaining the right to leave Russia and return to their Colorado home. But the nail biting stage was past. With any luck, we would be jumping through the exact same hoops a week or two later, with our own two children in tow.
That night we had dinner with the Barneses, now a family of four, in the hotel lounge. We would breakfast with them the next morning before catching our flight to Khavarosk. Cheryl and I had become friends over the telephone and via email and it was gratifying to finally meet her in person, halfway around the world. The boys, now and forever known as Michael and Kevin, were tired and pale, the stress and upheaval of the process evident in their bewildered, red-rimmed eyes. But not even exhaustion could prevent the celebratory mood that prevailed that night, among both adults and children. We ate soup and sausage and watched the boys devour oatmeal, which the kitchen was happy to prepare. Michael kept asking his new father, who spoke some Russian, when Sophie was being adopted and whether they would see each other again. I felt as astonished and honored to witness this young boy’s profoundly developed sense of loyalty and family as I felt the first time he approached me with the photos of his parents in Birobidzhan, three months earlier.
I would see pictures of Michael and Kevin a few months later and hardly recognize the undernourished, sickly boys I shared meals with in Russia, so complete was their physical transformation. People say the same, of course, about our children, whose appearance and health began improving even while we were still in Russia. But the healing power of love and good nutrition has limits. As we would soon learn, the mind is a more slippery creature than the rest of the body and can be capable of eluding even the most clever means of intervention. Cheryl and I speak frequently, often about this subject, and our families see each other when schedules and budgets allow. Her oldest son, a boy whose heart forever will be branded onto mine, has more emotional scars and difficulties from his first 3 ½ years with his birth family than from the neglect and deprivation experienced in the orphanage after he was removed and made a ward of the state. Like us, though for different reasons, the Barnes have their hands full.
And though Cheryl and Peter knew bits and pieces of the boys’ horror-filled past, concern for the future, for the health and peace of the family, was far from their minds that night. They were basking in the glow of their instant plurality, reveling in the fruition of a double adoption journey more arduous than any “How To” book would ever dare describe. And it was infectious. Bearing witness to the birth of the Barnes family, I borrowed them as a kind of template for my own imagination, roughing out a vague map to mark the contours and terrain of the new family Pat and I were about to create. Though my map was still fuzzy, I felt ready. Through the labor that love imbues, I would succeed at motherhood, restoring Sophie to physical health and nurturing the spirit that even the bleakest of surroundings had failed to subdue. As for Peter? Having already seen the sparkling dance in his eyes, I felt certain I would surrender my heart completely, acknowledging with forgiveness the grief preceding him as necessary initiation into the rite of a mother-son union forged with intention from boundless love and gritty determination.
When we arrived 40 hours later in Birobidzhan, after a tearful and joyous farewell with the Barneses in Moscow, we trudged up the three flights of stairs to Galina’s apartment, with four times the amount of luggage we carried on our previous trip and significantly more confidence and resolve. We were there to get our children. I packed everything they could possible need and then some. The local pediatrician we would use once our kids were home, also an adoptive father, had emptied out his entire storage closet and filled two duffle bags with sample antibiotics, vitamins, creams, and Tylenol, supplies we promised to deliver to the orphanage.
We spent a few minutes unpacking and smiling at Galina, nodding our head in appreciation while we inanely repeated spasiba, which means thank you. She had procured a new bed since our last trip and was excited for us to see it. Summer had given way to late fall, leaving Birobidzhan even more forlorn than I remembered. Galina’s apartment was quiet now that Bogdan was in school. The world outside was more hushed too, the trees having dropped their leaves in silent surrender to the coming elements weeks earlier. Later, when Pat and I walked the apartment grounds, I would listen to the crunching noise of ice splinter the brittle blades of stale grass beneath our feet. We’d leave a trail of ice shards splayed across the frozen earth like broken glass, marking our path as we marked time.
The next day Pat and I were brought to the big sunny room in the orphanage to meet Peter. Once again I was struck by the unnatural quiet of the place. Hundreds of young children lived in this building yet it was as silent as a cemetery buried in snow. Despite evidence of children, such as second sets of low handrails and filthy strips of rags hanging knee-length from a string for communal nose wiping, we heard no laughing, no babbling, not even the occasional cry or whine. We stood in muffled silence, waiting, until finally the doors flanking each side of the room opened as if on cue. Peter raced through one side as Sophie was lead by the hand through the other. In her free hand she clutched the little pink pillow with our picture in the sleeve. What joy!
Wearing a red shorts outfit over red tights and a pair of plastic red fisherman sandals, Peter ran straight to Pat, leaping with short, stocky legs into open arms. Our translator Tamara looked at me and we both smiled. I walked over to look at him more closely but then moved quickly back because he screamed. The astonishing sound pierced the eerie quiet of the building like the public wail of an emergency siren. Sophie was busy with a few new toys we’d spread across the carpet but when Peter screamed she looked up, cocking her head in consideration of the affront, but then quickly resumed her noiseless play. She had changed surprisingly little in the eight weeks since we’d seen her last. Not knowing what to make of Peter’s reaction, I inched my way over toward Sophie and sat down a few feet away. Fascinated by the pretend food and shopping basket Pat and I had purchased earlier that morning at the local market, she smiled coyly and handed me a purple plastic eggplant on a plate. I thanked her, spasiba, and made gobbling noises as I pretended to eat, the whole time watching Peter and Pat from the corner of my eye.
In some ways the lines were drawn the instant Peter loosed his deafening scream. To a certain extent, Pat and I still work to overcome the unexpected allegiances that established themselves that day. Peter, for any number of possible reasons, was drawn to Pat to the point of obsession and Sophie, though interested in “Papa”, was always more curious about me. Pat has always said that more than anything in the world, Sophie wanted a mother. And though I wish for Pat’s sake that I could say the same about Peter’s desire for a father, that Pat fulfills a primal need for our Russian son, I can’t. Peter loves Pat, and when it surfaces, his brooding anger is less focused and intense with him than it is toward Sophie or me. But our son’s dreams and wishes, the desires that dwell in the center of his heart, are often unknowable. Even in emotional moments of breakthrough, Peter’s deepest desires prove too fleeting to catch and are nearly always too tangled to translate into words of healthy expression. But what is true and knowable is that Pat has forged his own lasting and meaningful relationship with Sophie while I continue to make inroads, slow and steady, toward the closely guarded chalice of Peter’s hobbled heart.
In the intervening years since we first met, I’ve begun cultivating a quiet acceptance about Peter, as well as a growing sense of peace regarding the efforts I’ve shown him, that I didn’t possess back then. In fact, when we first met his reaction was so far a field from what I expected, and I was at such as loss as to how to respond, that I began a harmful, self-deprecating inquiry into my ability to mother that I still struggle daily to combat. As is the case with animals of all varieties, I’ve always been drawn to children and them to me. Even mean, unsociable dogs wind up licking the back of my hand and letting me scratch their ears. Until Peter taught me the danger of misplaced confidence, and the virtue of unwavering perseverance that I strive toward now instead, my “natural” gift with children was a trait about which I took pride and upon which I readily, even casually relied.
Unlike the easy bond that developed between Sophie and me, my relationship with Peter formed slowly and with deliberation. I worked for each half smile or stiff embrace my son begrudgingly offered and the next morning we would start again from scratch, without benefit of the memory of the previous day’s progress. That first day I earned nothing. Instead, I listened to the sound of his raspy, monotone voice and watched as he rambled around the room like a wooden soldier with sadly painted eyes, methodically gathering all the new toys and books and heaping them in a pile. Peter made a cross face at Sophie whenever she approached the growing mound but otherwise ignored her. His sole interest lay in what we had brought. He would carry with him as many as he could hold, his knuckles white from the ferocity of his tiny grip, and occasionally extend them to Pat, whom he already called Papa.
Neither the rhythm of Peter’s voice nor his body language was normal, but at the time I was more rattled by his reactions, which were robotic, repetitive and at times, obsessive. For instance, whenever Sophie interfered with his arrangement of toys, which she did and still does without compunction, he’d angrily rearrange them exactly as they’d been before the intrusion, while uttering something to himself that sounded like “paduski”, which we later learned means “pillow”. When he wasn’t guarding his new possessions, he would pick up a toy or book, approach Pat walking backwards, and then plop into his lap, legs splayed awkwardly in front of him like fallen tree trunks. I thought it a strange approach but now I understand that Peter was trying to make physical contact without having to make face-to-face contact.
Our translator Tamara tried assuring us throughout the rest of our visit that afternoon that Peter’s reactions were not uncommon and under the circumstances, even expected. Sophie was an unusual child she told us, gifted and wise despite her orphaned status, and we were cautioned against comparing Peter’s more typical orphanage behavior to her more advanced capabilities. “He’ll come around. The boys always take longer,” she said. “They especially like the men. Men fascinate them.
The women, not so much.” After a dinner of borscht and a potato dish similar to hash browns, Pat and I talked about Peter late into the starless night, about his beautiful face and worrisome demeanor, and about the quality and shape of his mostly absent philtrum and thin upper lip.
For hours we talked about Tamara’s advice, going back and forth like competitors volleying on a tennis court regarding whether Peter’s behavior and physical appearance were cause for serious concern. We never fought but we also never agreed. As Pat would later confide, he was determined to bring Peter home, no matter what, once we had made the decision to travel back to Russia to meet him. Though worried beyond distraction that Adopt Through Us refused to obtain the additional photos that Dr. Aronson requested, Pat could not entertain the notion of leaving another son behind. It was that simple. He had buried two boys in the span of a decade and walked away from Ben only weeks before. He would not turn his back on Peter.
Unable to properly appreciate the cemented nature of Pat’s resolve, his unwillingness to acknowledge my concerns frustrated me and this in turn lead me to second-guess my intuition and judgment. Maybe I was reacting the way I was because Peter had rejected me so blatantly in favor of Pat. Or maybe my concerns were exaggerated because they stemmed from emotional exhaustion and the inevitable let down that occurs when expectations are beyond proportion to what circumstances should reasonably allow. As I lay awake listening to the Russian night once Pat finally slept, I thought about Tamara’s words. “He’ll come around.” It was a phrase I repeated again and again in my head as I watched the mysteriously peaceful rise and fall of Pat’s chest beside me. Eventually, the delicate hope resounding in our translator’s voice filtered through the firestorm of panic and doubt clouding the vestibule of my thoughts, and I slept alongside my husband.
I began my quest to reach Peter first thing the next morning. I planned to win his attention and trust with food. We went to the local market and bought juice, whole milk, yogurt, fruit and cheese. While shopping with the help of our translator for the few items on the list, Pat combed the sparse shelves for sunflowers seeds with the fervor of a squirrel on the eve of winter’s first snow. He never found his seeds but he did emerge triumphantly with a can of mixed nuts to quell his munchies.
Shopping in a semi-rural Russian grocery store is an experience not easily forgotten. For starters, there were two humorless security guards – one at the entrance and one patrolling the store – for a space much smaller than the average 7-11. I was glad I’d left my green trench coat at home this time. My puffy down parka didn’t seem to attract the same level of scrutiny. Also, the market was stocked much like a 7-11, minus the Slurpee machine. This kind of scarcity is acceptable in a convenience store but not for a place upon which people depend to feed their families. At checkout, customers must buy the plastic bags to carry their groceries away, which is a fabulous eco-friendly idea, even if it wasn’t instituted as part of a Russian green initiative.
Pat and I didn’t understand that we were supposed to buy the bags, however, and Tamara had already gone back to the car. An argument almost ensued but then the security guard took the slightest step forward and we abandoned our protest, deciding instead to resume acting like the model adoptive parents we were trying to be. We presented our rubles with open hands, let the clerk take what she would, and scurried from the market giggling like teenagers about the odd seriousness of the Russian workforce.
After shopping, we picked the children up and brought them back to Galina’s apartment. I planned to feed Peter with a spoon, as though he were an infant. I would do the same for Sophie, though she was mostly along for the ride. The adoption hearing was scheduled for the next morning and there was no time to lose. We already had been informed there was no time to take pictures of Peter, email them to Dr. Aronson and wait for her reply. I either had to get on board with everyone else, including my husband, or stop the train that was chugging full throttle toward the station. I felt blackmailed, hoodwinked and cornered. It wasn’t just Peter on that train. Sophie was on it too. I either consented to adopt Peter, without further inquiry or opportunity to explore my concerns, or risk jeopardizing Sophie’s adoption and the emotional stability of my husband. Visions resurfaced of “back-up” couples hiding in the wings, waiting to snatch Sophie from our arms like a coveted prize the moment we showed the slightest chink in the armor of our commitment to complete the double adoptions.
Having the fate of your family, the child you have met and held, whose room you have decorated and whose face you have memorized, in the hands of disgruntled bureaucrats only just emerging from the collective mindset of communism, feeds anxiety the way greasy food feeds intestinal upset. I was not thinking rationally when it came to finalizing Sophie’s adoption. Every insinuated threat, and every furtive glance exchanged between our handlers and the orphanage workers, sent me into a paranoid tailspin over the prospect of losing our daughter. We had rejected Ben, pushed Adopt Through Us to find us another boy, and right or wrong, had agreed to travel and meet Peter even though we were unable to obtain the additional information that Dr. Aronson requested. The rules were being bent to accommodate the misfortune with the baby and all involved were nervous and on edge. The message was clear. Russia is not America and when things go wrong, there is little if any recourse.
That’s why I didn’t put on the brakes and insist that we slow down, collect more information, and even postpone the adoption hearing, if necessary. Would the Russian officials really have revoked our opportunity to adopt Sophie if we continued to voice concern over Peter? Probably not. But I wasn’t so confident at the time. Pat already had made his decision and was turning an impassive ear against my growing and mostly unsubstantiated neuroses about the undernourished but twinkly-eyed toddler we were scheduled to adopt the following day.
And what if I was wrong? How could we return to New York without Peter? We already had turned down Ben after coming home from Russia two months earlier. What would I have said to family and friends, the hairdresser and mail carrier, the second time around? That I had a bad feeling, that something about him seemed kooky and peculiar? I could have been wrong and I desperately wanted to be wrong, for myself and everyone else, and for Peter most of all. I wanted two children, and I wanted Pat to have a son. I wanted Sophie to have a sibling, a brother who shared her heritage and early circumstances if not her genetic material. And I wanted Peter to be okay. I wanted to want him. In the end, the uncooberated alarm bells sounding in my head were no match for the double whammy of burning desire and nagging self-doubt.
My growing resolve to propel myself forward, to embrace Peter and make myself see what Pat saw, a precious child in need of parents, took hold as I slept. Ben was no longer a part of our family vision and I could not allow that experience to cloud my impressions of Peter with shades of doubt that were incapable of being properly examined. And this, I told myself, is exactly what I had been doing.
So as the morning grew brighter, and the frost that spread like spiders across the windows began to melt, I allowed hope to enter my heart and mind and find purchase. Springing from bed determined to put my food plan into action, I showered, drank two cups of instant coffee, and smiled with the relief that complete surrender offers.
The orphanage officials allowed us to take the children back to Galina’s apartment for a few hours that morning. As soon as we walked in the door, I unloaded our stash of food and got to work. Peter took the bait immediately and Pat and I laughed out loud as we watched two hungry toddlers gobble up every morsel offered.
They loved having someone feed them and opened their mouths like newly hatched chicks. Peter’s eyes stretched so widely I thought he was in shock from the novel abundance of the experience. After ample servings of fruit and yogurt that would later cause minor intestinal distress to their underdeveloped digestive tracts, Pat and I introduced the kids to sippy cups.
Neither of them had any sucking instinct left as they had been drinking from cups since babyhood. Although drinking from a regular cup works the muscles in the mouth needed for proper language development, using them as toddlers can be a messy endeavor, especially while traveling. Pat and I were aware of how thirsty the children were and we wanted them to have unlimited access to water and milk, whether in the car, at the orphanage, or on the airplane. We demonstrated the use of the sippy cups and watched as they struggled to get the contents into their mouths. When they gave up on water and milk, we tried white grape juice. The sugary flavor did the trick, enticing them both to keep working the cups until they figured out how to use them.
I would continue the strategy of building trust and intimacy through the medium of food for several weeks. Though Peter would quickly learn to use food, particularly the refusal of meals, as an expression of defiance, frustration and sensory overload, his basic fear of not having enough to eat was a powerful motivator in the first few months he was with us. During the rest of our stay in Birobidzhan, Pat and I fell into a mini-routine of playing with the kids in Galina’s cramped apartment, taking a break for our feeding/bonding session, and then venturing out in the cold to take walks or kick a ball around the deserted grounds. Pat mostly played with Peter and I mostly played with Sophie. The few people we passed on our walks seemed dumb-founded by the image of the strange Americans strolling the grounds with two Russian toddlers in near freezing temperatures. Most Russians we encountered believed that babies and young children should not be subjected to the cold but if absolutely necessary, at least should be bundled to the point that no skin is exposed. After the second or third cockeyed glance or indecipherable insult, we’d give up and take the children back inside.
The books fascinated Peter while Sophie focused on scribbling with the studied intensity of someone writing a dissertation.
Later we tried on their new clothes and let the kids wear them around the apartment until it was time to go back to the orphanage for their whopping 3-hour naps. We were told not to send them back with anything we intended to keep because an orphanage is a communal place that lacks the luxury of individual ownership. Although Peter continued to scowl and sometimes scream whenever I tried to play or read with him, he happily let me dress him in new clothes and shoes. Like his insatiable craving for food, the instant rush associated with the act of acquisition, in this case clothing, overrode his fear-based impulses. A faint warning bell bleeped inside my head as I noticed the possible connection but I quickly dismissed it. I was done looking for signs of trouble, at least for the time being.
January 30, 2010
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
September 5, 2007. Peter and Sophie start school today in Red Hook, across the river from where we now live. The 1733 Dutch Colonial stone house Pat and I fell in love with before the adoptions, the house we promised the kids was their “forever home”, is now for sale. We’re entering the last stages of building a new house, complete with geothermal heating and cooling and solar panels. We want to plunge ahead with a clear carbon conscience. The decision to move, however, was driven not by ecological consideration but rather by Peter’s educational and therapeutic needs. We fought his school last year to the point of emotional and financial folly; we should have taken our lawyer’s advice and moved thousands of dollars earlier. On the way to school, Sophie tells me she’s a little nervous, which is understandable for a child about to start Kindergarten. Peter claps like a toddler and tells me that bunnies are on the road, which they aren’t. He must be nervous too. Today he starts the PEACCE program, an acronym for the unwieldy title: Providing an Education for Autistic and Communication Impaired Children Effectively. There are five other boys in Peter’s class, one Special Educator and two teaching assistants. Through repetition and data collection, the program promises his brain will learn. To complement academics, social skills are taught and practiced to the point of habituation. He’ll also receive individual and group speech and language therapy, counseling, occupational therapy, and physical therapy. I’m optimistic but at the same time quietly braced for battle. Peter’s issues are permanent; brain damage cannot be undone. At least two of the boys in his class appear lower functioning than he, but they may have more recovery potential. FAS is a stealthy, cunning disability, capable of fooling even the best trained. Our son presents far better than he functions and his former school was all too willing to make snap judgments based on very little other than appearance when it came to Peter’s educational needs. We’re hoping for a more thoughtful, reasoned approach with the new school. But the foremost goal of the PEACCE program is integration, as mandated by state education law. Peter no doubt will thrive in his new environment, which is quiet, predictable, and highly structured. I kiss him goodbye and he waves me away. Because we need this program to work, so that our son’s mind and body can begin to integrate more meaningfully, I feel my nerves gathering hold. As I watch him walk toward the PEACCE classroom, hand in hand with his new teacher, I pray he doesn’t thrive so much they decide to set him free.
Chapter 12: Hello Peter
We were home two weeks when Peter’s referral information arrived. In many ways I feel our son was destined for us and we for him; as though the path leading toward him, a path riddled and fraught with hazard, detour, and impasse, was laid eons ago and in deliberate preparation for the odyssey that lay ahead.
In the intervening days after we returned from Russia, Pat and I slowly acclimated to the reality that Ben was gone. I also had surgery to remove some of the screws and the titanium plate in my lower leg and ankle. The surgery was scheduled for two days after our return but had to be postponed a week because I became so ill with Giardia that I spent several hours in the emergency room hooked up to an IV. While recuperating from the double whammy of surgery and Russian-acquired gastrointestinal insult, I continued to speak with Dr. Aronson about Ben. With her urging, Pat and I also consulted another renowned physician in the field, Dana Johnson, who runs an international adoption clinic at the University of Minnesota.
I’ll always remember the great compassion Dr. Johnson showed Pat and me, two complete strangers. How he dropped his busy schedule to review the information we faxed on Ben, calling back to give his opinion, free of charge, within an hour of being contacted. His conclusions, which mirrored Dr. Aronson’s, extinguished once and for all the sputtering flame to which we stubbornly clung. His remarks, predictable as they were unwelcome, brought necessary closure to our futile, melancholy attempts to keep hope for Ben alight in the waning embers of our hearts.
My conversations with Joan Slipp, the Executive Director of Adopt Through Us, were less appreciated. I endured listening to an endless barrage of excuses and false explanations that spanned the days before my surgery and continued well into the recuperative period. They tried to call us in Russia but Galina never gave us the messages. Our cell phone number had been misplaced. Russian orphanages are often called “hospitals”. Penny, our caseworker, was inexperienced. Lots of babies can’t hold down food (my personal favorite). Even with the generous help of pain medication, complements of my orthopedic surgeon, I was nearing the end of my tolerance. Thankfully, Joan Slipp cracked before I resorted to violence, admitting with trembling voice that Adopt Through Us had made layer upon layer of what she apologetically claimed were unprecedented mistakes.
The Birobidzhan orphanage staff and adoption handlers had asked us to meet and consider three other boys before we left Russia. They knew the situation with Ben was disastrous and that we were unlikely to adopt him. They also knew we had been willing to adopt two children at once. We might still be willing to relieve the state of an additional mouth to feed, they may have wagered, if even a marginally acceptable replacement could be produced. Although Pat and I had no interest in shopping for a replacement child, the staff refused to take no for an answer. Instead, they cheerfully stewarded us through the orphanage halls to meet and observe three boys whom I prayed were oblivious to the stakes at hand.
The first boy we met, Andrei, was three years old and completely nonverbal. The second, Viktor, had a grossly misshapen head and unfocused eyes. The doctors tried persuading us that this poor child was keenly intelligent, despite his appearance and constant grunting, and that the shape of his head would normalize in time. The third boy, who was also three and reminded me of Christopher Robin, was tall, fair, and whisper quiet. Despite his shyness, he was verbal and able to assemble simple puzzles. Of the three, he was by far the healthiest.
At the end of the day, we told Joan Slipp that we weren’t interested in another toddler and that we needed her to locate another male infant, preferably from Birobidzhan, that we could meet and adopt on our second trip to finalize Sophie’s adoption. We had zero intention of taking a third trip. Despite the irregularity of our demand, we knew this was accomplishable because Pat and I had been encouraged to consider adopting one of the three boys shown us by the Russian staff in Biro.
I was nearly manic about this pursuit. Pat was in a downward spiral of grief and despair that I had never seen before. We dated for many years before marrying because of his real ambivalence and fear over having children again, something I knew I wanted and wasn’t sure I could give up. Having lost two sons, along with the collateral damage of a failed marriage and a surviving daughter left fragile from the experience, it was an enormous leap of faith and love for him to find the courage necessary to give fatherhood and marriage a second chance.
But then the floor fell out from beneath him in Russia. “I’m no good for boys,” I’d hear him confess to one of his friends on the phone. “First Vincent, then Joey, now Ben.” Terrified of what I saw in Pat’s eyes, and what the hollow sound of his voice confirmed, I felt compelled to mollify the horrible injustice of what was happening to us. Deep down, I felt his stability, and possibly our marriage, depended on it.
So I pushed. Several days later Joan Slipp called to say there wasn’t a single healthy male infant eligible for adoption in the entire country. We could wait a while longer, she explained, as long as we understood that there was a process we needed to adhere to and that too much delay might jeopardize the ability to finalize Sophie’s adoption. It was an entirely false, maliciously calculated, threat that Adopt Through Us would repeat more than once over the course of the next two months.
And it had its intended effect, which is difficult for me to reconcile. I’ve spent a good deal of time chastising myself for allowing these kinds of bullying tactics to succeed against us. After all, I’m a lawyer who’s trained and presumably inoculated against such transparent strategies. But there was so much at stake and so much had happened to shake the foundation of my more rational faculties. We had already lost one child and after three days spent with Sophie, we were hopelessly in love with her. I had greedily indulged in the silky feel of her baby soft skin, inhaled the lush scent of her downy blonde hair, and had committed to memory the whorls of the cowlick that complicate the crown of her too sparse hairline. Pat and I had heard plenty of horror stories of Russian judges refusing to finalize adoptions and of multiple agencies referring the same child to more than one couple. Whether true or complete fabrications, the very thought of her adoption being put in jeopardy sent chills down my spine. Joan Slipp was hitting below the belt when she brought Sophie into the discourse.
When I later asked about the boy we thought looked like Christopher Robin, she said we didn’t want him, and wouldn’t say more. At the time, her silent adamancy conjured up visions of medical or social conditions too horrible to discuss but in hindsight, I doubt there was anything wrong with that child. What Joan Slipp was doing was laying the foundation for Peter, clearing all obstacles, whether newborn or preschool age, that could potentially block the way.
“But we do have a child in mind,” she said. “He’s three but cute as a button. He only just came available. And he’s from Biro.”
In spite of our reluctance to consider older children, Pat and I agreed to look at the photos and medical report. Although we had been down this road so many times that elation no longer seemed possible, the pictures arrived and I smiled despite myself as I looked upon those happy, cinnamon eyes.
Quickly grabbing a blank growth chart from the top of the stack of materials I had printed from the Internet, I plotted his measurements. His head circumference was reassuring, especially for an orphanage child, and his weight was at least on the chart, somewhere around the 7th percentile. His height measurement couldn’t be plotted because it didn’t make the chart, or for that matter, the graph paper.
But those eyes, the way they managed to sparkle even through the grainy blur of the low-resolution photographs. Peter’s eyes are what captivated me, kept me searching and eventually longing for more positive answers that would give us the strength once more to pry open the chambers of our hearts. They were brighter than circumstances should have allowed and I felt them draw me, nearly without volition, toward a sense of hope renewed.
The video of Peter came the next day and we watched it in the sunroom, the soft light of late morning casting shadows across the screen and Peter’s face. The film was taken in May, three months earlier. We knew this because a Happy Memorial Day banner was plastered in enormous block letters across the screen, obscuring much of the video, including the close-up footage of Peter’s face. To this day I can’t figure out why anyone would think this was a good thing to do, but there it was. Peter looked great, as Dr. Aronson would later confirm, but there were certain crucial things we couldn’t discern, in part because of the Memorial Day banner and also because Peter was so happy and animated in all the photos and the video.
For instance, we couldn’t tell what, if anything, he was actually saying on the tape. Adopt Through Us claimed it had no one to translate Russian videos and at the time, we had no access to native Russian speakers. Joan Slipp admonished that obtaining a translation was an unnecessary waste of valuable time, especially since he was obviously “talking” in the video, which she took as a very positive sign. And though delightful to see, especially given the grim orphanage environment we’d just experienced, the fact that Peter smiled so broadly in the photos and giggled throughout the video made it impossible for Dr. Aronson to tell whether he had a philtrum.
“Ask for another set of photos,” she told us. “No smiling, no facial expression. I need a calm, relaxed face. Front view and two-thirds profile.”
Although Adopt Through Us honored this request, the second set of photos were also insufficient to allow Dr. Aronson to run the computer program that helps identify children who may have been alcohol-exposed based on dysmorphic features and growth parameters. We also weren’t sure at the time, and are even more skeptical now, whether the boy in the second set of photos was even Peter.
Our request for a third set of photos, with detailed specifications, was denied. For the second time in days, Adopt Through Us reminded us not to push the envelope. If we aggravated the Russian authorities too much, Joan Slipp warned, they might deny us permission to adopt Sophie.
The unfortunate truth is that threats work when people are vulnerable because they have something valuable to lose, in our case Sophie. So we dropped it. We thought he looked pretty good based on the video, and so did Dr. Aronson. His healthy head circumference, though not determinative, suggested against FAS and there was nothing dull or particularly alarming in the video about his behavior, appearance, or movements. He didn’t appear developmentally like other three-year olds we knew but we also didn’t know any children who had spent the vast majority of their day tied to a crib or sitting in a playpen, without toys and without anyone with whom to play or talk. For this reason, Dr. Aronson warns prospective parents that an orphanage child loses at least a month of development for every three months of institutionalization. Peter had been in the baby home since he was five months old, which meant at the time of the video he was developmentally more like a two-year old, and maybe even younger.
“Take pictures once you’re there and email them to me,” Dr. Aronson suggested. “Meet him and get your daughter.” And that’s what we did.
January 29, 2010
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
September 3, 2007. Today is Labor Day and my nephew Jay’s birthday. He left for Georgetown last week, a college freshman. Thoughts of Jay (who only yesterday was “Jay-Jay”) make me mindful of how swiftly childhood passes, and that Peter is being robbed of the childhood he deserves. His flaws are not our fault, but they aren’t his either. As the family readies for a Labor Day pool party, complete with games, activities, clowns and swimming, I fret over how well Peter will tolerate the excitement. We are in a difficult place with him right now and it’s important that I reflect on how much we’ve achieved, Peter included. Toward this aim, I have constructed an incomplete list of challenges that our incomplete but courageous son has conquered in the last year: makes eye contact; sits criss-cross; walks up stairs with alternating feet; uses pronouns; brushes his teeth; heel walks (instead of toe walking); refrains from feces smearing, urine spraying, biting, opening car doors (while the car is moving), and tearing wallpaper; draws simple faces; hugs without hurting the person being hugged; allows himself to be hugged; tolerates hair brushing; hoards less; plays imaginatively; has started to play with other children; swims; plays soccer like a champ (never mind he consistently takes the ball away from his own teammates); stays dry during the day again; recites the alphabet; counts to 30; consistently recognizes the sight words “I”, “A”, and “look”; knows most shapes and colors; tolerates a haircut, and to some extent, fingernail and toenail clipping; makes his bed; and, best of all, says “I love you”. The list is larger still, but this is enough to buoy my spirits. We are getting there. Congratulations, my precious boy, I am proud of you.
Chapter 11: Goodbye Ben
Pat and I flew back to Moscow on Domodedovo Airlines and then flew to St. Petersburg the next day. My seat on the flight to Moscow was a middle seat next to a very old, round woman with long gray hair who wore at least 3 layers of clothing, despite the summer weather, and carried a cane. Gauging from the smell, none of her garments had been washed for at least a year. Because the cozy proximity was making me queasy (I was a mere day away from exhibiting overt symptoms of Giardia), I got up to use the restroom and get some air while the plane was still boarding. As soon as I walked down the aisle, Pat switched seats with me and refused to move when I came back. I had no choice but to climb over both of them to the window seat as I gratefully chided his stubbornness. Once I was settled, the old woman draped her coat across Pat’s lap, spread her hips well into his seat, dropped her cane between his legs and then promptly closed her eyes. Pat looked at me, we tried not to laugh, and then he removed the cane, using only his thumb and middle finger as he leaned it gingerly against her. After that he shook and slid the coat off his lap and scooted it toward her with his foot. Ever ready with hand sanitizer, I discreetly slipped the small bottle into Pat’s palm and kissed his newly disinfected hand as he passed it back. The exchange caused the woman to stir and say something incomprehensible in Pat’s direction. When he didn’t answer she hoisted up her skirts, shoving them expertly between sturdy legs covered in knee-hi stockings, and scowled like a bulldog. She must have been senile or drunk because she kept speaking to Pat in Russian throughout the long, uncomfortable flight, becoming increasingly agitated when he wouldn’t answer.
After this treacherous trip, where the rest of the passengers drank and smoked while Pat endured the demented Babushka, we spent a sleepless night in Moscow. Despite our shell-shock, we were happily relieved when, after a short, uneventful flight, we arrived at our hotel in St. Petersburg, which was on a picturesque little canal. After resting a while in a fabulously large bed, we felt semi-human again. We were able to get online in Moscow before leaving and had scheduled a phone call with Dr. Aronson. I don’t recall whether we had to stay up late or awake early to make the call the next day, and it hardly matters. Pat and I slept very little during this entire leg of our trip. We were too fraught with worry over the baby and riddled with anxiety over what Dr. Aronson would say. I had emailed her the pictures of Ben a few days earlier and despite the resignation I’d felt in Birobidzhan, I inexplicably interpreted the fact that she wanted to discuss her impressions on the phone, rather than by email, as a hopeful sign.
The travel agency we used to book our trip to Birobidzhan arranged for a driver and interpreter for us in St. Petersburg. Unlike Sergei in Moscow, this man was petulant, disdainful of Americans, and utterly bored with our presence. But he did take us to the sights, including the fantastic State Hermitage Museum, where we easily could have spent the entire next three days, despite the coat incidents haunting me.
I carried with me a short olive green trench coat and it seems wherever I went, starting with the Hermitage, a security guard would pull me out of the entrance line. I use the term “line” loosely as what really happens at Russian venues is that people elbow and push their way toward an entrance or ticket gate, tossing the young, infirm and elderly aside to gain a better position with the affable casualness of Roman Gladiators. Once out of the line, the coat enforcer, whether an old lady in a chair or a young man with a crisp security uniform, invariably would order me to remove my unassuming frock and either carry or check it. That four people next to me wore coats or baggy pants with mounds of pockets that easily could have concealed any number of contraband items was of no matter. It was either something about me or something particular about my raincoat. Whatever the reason, Pat and I would have several other opportunities to test our hypothesis regarding the visceral disdain my olive green trench coat evoked among Russian venue attendants: at the tourist trap ballet (the dancers were so old they stood and explained what they would be doing had they the energy to actually dance); at Peterhof, the summer palace and gardens of Peter the Great; and at the Alexander Nevsky Monastery, where many famous Russian musicians are buried, including Tchaikovsky, Rimsky-Korsakov and Glinka. I continued wearing my coat not out of sheer stubbornness but rather because the wind, as early as mid-August, was impatiently blowing autumn toward our way. And for this, I was stopped at every turn.
After our day at the Hermitage, Pat and I roamed the streets of St. Petersburg looking for a restaurant. The city is beautiful, and very European compared to other parts of Russia, but peeling paint is everywhere, alongside cracked sidewalks and crumbling brick facades. Our interpreter confirmed what we already knew: that St. Petersburg has suffered in the decade following the collapse of the Soviet Union. Whether related to the coat, or perhaps just the fact that we were Americans, the establishments we tried, one after the other, told us they were out of everything on the menu except caviar and Vodka. Pat could have survived on this fare, but since I don’t like either, we continued looking until we came upon a Pizza Hut, where we ordered a large pepperoni pizza. Although my New York husband normally abhors national chain pizza, and despite the fact that the Russian Pizza Hut is a very poor relative of the American Pizza Hut, we joyfully devoured the entire pie on top of our hotel bed, washing it down with a couple of Cokes. We always try to eat local cuisine whenever we travel, but since the citizens of St. Petersburg wouldn’t even let us eat, we didn’t feel too bad about holding up the culinary white flag and settling for pizza.
Pat and I spent the remainder of the evening writing down a list of questions and concerns about Ben in preparation for our middle of the night phone call to Dr. Aronson. As it turns out, we needn’t have bothered. The “real” medical records, along with the pictures and measurements we provided, were all she needed to tell us that we needed to move on. “You can heal his body,” she implored, cupping her hand over the phone as she called to one of her boys to brush his teeth. “Sorry about that. I gotta get my kids to bed. Mary, it’s his brain that can’t be fixed. The damage is done. That’s the thing. He’s got the head circumference of a two month old. He’s 12 months.”
I wanted to know if he had FAS, and so I dumbly asked. “Looks that way,” she said. “He does. Yeah, he definitely does. All the signs are there.” Well aware of Pat’s history with his own two sons, the adamancy in Dr. Aronson’s voice softened somewhat as she continued. “You guys said you didn’t want this. You didn’t want to take on FAS. This isn’t the baby for you. I’m sorry. You shouldn’t do it.”
She wouldn’t budge from her position no matter how we tried to sway her otherwise. When push came to shove, she shoved, and I’m grateful for it. She must have known Pat and I needed strong handling, the telephone equivalent of a slap across the face. I believed Dr. Aronson when she told us during the adoption classes that her role is to provide information to prospective parents without making decisions for them. Thank God, in this instance, she had the humanity and decency to break her own rule.
With heart and mind aligned, Dr. Aronson attempted to knock some sense into two bewildered and grief-stricken people, who at the moment weren’t particularly interested in hearing medical prognostications. She appreciated the devastating fact that we had been sent halfway across the world on false information and in futile search of a baby whose very existence was a cruel fabrication. But she also knew the Ben we loved was a fiction and that the real Ben, the baby we finally located in the hospital, was beyond the realm of our emotional and physical capacities.
I remember very little of our trip after calling Dr. Aronson, except that we held each other and made love that night, with the kind of passion that blossoms perennially from the love and intimacy that grows deeper with each shared experience, even the difficult ones. The only other thing I recall vividly is stepping onto the Delta airplane, which for me symbolized the comparative rationality of the U.S. I was so overcome with relief that I had to restrain myself from grabbing the face of the hapless flight attendant and kissing her square on the lips. Pat and I envisioned collapsing on the airplane and sleeping the entire flight home, and we quickly settled into our first-class frequent flyer purchased seats. But this turned out to be a naïve fantasy. The plane was filled with new adoptive families, the youngest members of which were intent on screaming and complaining the entire way.
One young couple, probably in their mid-twenties, sat across from us with a baby boy about eight months old. His face was covered in angry red blotches and pinched in obvious discomfort. They thought he was allergic to the formula they brought and didn’t know what to do. No one had told them to feed the baby the same diet (watered down yogurt) he was fed in the orphanage until they were safely home and within shouting distance of their pediatrician. I watched as they struggled to make the baby comfortable and listened to the escalating panic in their voices when nothing they tried worked. They seemed so young to me, probably because most people we encountered during the course of our adoption journey were older, at least in their thirties. At twenty-five, I never would have had the gumption, organizational skills, or driving desire necessary to endure the arduous, seemingly endless, high stakes game of international adoption.
At least our new friends Jackie and Sam, who we had met at the start of our trip in Moscow and who occupied the same approximate age bracket as Pat and me, were on our flight with their new five-month old daughter. We earlier had swapped stories like irreverent, seasoned war veterans (ours of course trumped) in an effort to widdle away the hours in the airport, Jackie bouncing a chubby, chortling Natalie on her knee the entire time. She was exhausted but happy and I envied the completion so evident in her face. After a while we left the baby in the nervous, wide-eyed care of Sam and Pat so that we could walk through the Duty Free Shop. Staring longingly at the delicate porcelain figures behind locked glass, we eventually convinced each other into buying keepsake Lladros, a baby girl for her, and despite the armor of resignation I thought I’d acquired regarding Ben, a toddling boy for me.
The figurine was bubble wrapped and carefully stuffed beneath the seat in front of me, as there was no room overhead. I feigned interest in looking at it to avoid the imploring stares of the new mother from across the aisle. She and her husband were getting nowhere with their baby, who was miserable and becoming increasingly distressed. Four hours into the flight, the woman had resigned herself to a regimen of neurotic hair twirling that eventually evolved into hair chewing and rhythmic rocking. The man cradled and shushed the baby against his chest, doing his best to comfort both the child and his quickly deteriorating wife from the cramped confines of his window seat.
At some point I dug into my satchel and pulled out the file on medical issues I had compiled for our trip. Somewhere, I knew, was a chart from Dr. Aronson explaining how to dose Benadryl, in case of allergic reaction, according to the baby’s weight, or if unknown, age in months. I offered the chart to the woman, who stared at the paper wild-eyed and without comprehension. After explaining that we came prepared with all kinds of instructions and medical supplies from a renowned adoption pediatrician, she hoisted the baby from her husband’s arms and lifted him across the aisle into my lap. “Give him the Benadryl, please. Whatever you think’ll work. Do it. Now. Will you?” And so I did. The baby slept for two hours straight and then awoke with a reinvigorated interest in screaming. The woman begged me to dose him again but I politely refused. Pat and I put on earphones, ate the chocolate ice cream sundaes offered us by the flight attendant I almost kissed, and held hands as we pretended to sleep for the rest of the flight.
We came home to a hot, empty house. The dog was in the kennel, her bowls upside down on the counter next to the sink, right where we had left them. Sophie’s room was still pristinely poised for occupation and I smiled with the thought of the mayhem this catalogue-perfect space would see once we brought her home. The closed door to the nursery, small and cozy and doused with hope for Ben, echoed with the sound of whooshing air as I peaked my head inside. In fading light I stared numbly at the red baseball cap rug on the floor, the letter B adorning the lid, and the wooden BEN letters that had been meticulously painted on the kitchen island and nailed to the wall over the crib. Taking them down was not an option that night, and neither was closing the door.
We would not call Adopt Through Us until late the next day. While Pat unpacked and listened to phone messages, I took a bath and then crawled greedily into bed, waiting for the window units to cool the steamy upstairs of our old stone house. Unable to sleep but too tired to function, I watched a Seinfeld marathon for three straight hours. Glad to be home and drained from our experience, Pat and I eventually fell asleep in each other’s arms, pillows dampening against our heads from the quiet tears that flowed for the boy who nearly became our son.
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
September 2, 2007. Peter is screaming in the other room because Pat is giving him a hold. The house is alive with the eerie sound of grunts mingling with periodic screeches. He sits with Peter between his legs, big arms wrapped around little ones so that he can’t hurt himself or Pat. He can spit but he won’t find purchase. They are like two bent spoons, this grown man and child, stuck together without dignity in search of household harmony. We were taught this technique over a year ago and use it only when necessary. In order to be freed, Peter must sit quietly and without resistance for three minutes. The first time I used a hold on my son I felt like I was breaking a wild animal. Yesterday he scratched the leather seat of our favorite rocking chair with his fingernails. Peter uses this chair the way a cat uses a scratching post, doing it whenever he has a chance, which isn’t often. Except in his bedroom, Peter is never alone. He suppresses the impulse to scratch until our backs are turned and Sophie is out of sight. Once discovered, and despite obvious evidence, he lies proficiently about his role in the vandalism. Last night I asked if he’s ever been able to stop himself once he feels like scratching the chair. “No,” he said, “never.”
This morning I find dirty diapers, bloody tissues and old sandwich parts in his bedroom, stuffed into the bottom of the basket he uses to store artwork. The mystery of the room’s odor is solved. The reason for the hold is that Peter could not stop the tantrum that erupted when he was asked to draw a picture showing how he feels about his recent offenses. He gets to work afterwards, with prompting, and presents a drawing that illustrates perfectly the disordered nature of his mind: he draws a picture of himself, the rocking chair, a rocket, the swimming pool, the hammock, two windows and a calendar.
Chapter 10: Russia, Part I (Something’s Wrong)
The hospital where Ben was kept looked like all the other buildings in Birobidzhan except it was more dilapidated. We walked up two flights of steep stairs, careful to avoid the crumbling holes and badly splintered handrail, and came upon a very old woman sitting in a chair. Her job was to block the door to the pediatric and obstetrics ward. Still in a walking boot and badly swollen from traveling, my ankle screamed displeasure with every step. We had been in Russia for four days and had failed to encounter a single elevator.
Tamara caught her breath at the top of the stairs and said something to the seated woman that made her scowl. She scowled even more as she stood arthritically and dragged her chair aside. We passed through double doors, one of which was locked, and nearly ran into a teenage girl holding her rounded belly with pained concentration. Eyes bulging and bent at the waist, she was definitely in labor. We would see her leave two hours later, hair mussed and wearing the same clothes, now bloodied. There was no baby in her arms and I watched hypnotized as she gingerly lowered her exhausted body down the stairs. She was the first but would not be the only person we saw covered in blood or dirty bandages during our three horrifying days with Ben.
Tamara took us to a waiting room so filthy I was afraid to breathe. A broken couch that smelled like mold and was littered with round, suspicious stains stood against a windowless wall. The rug next to it was thread bare, its last strands of fringe knotted with hairballs and globs of matted dust. There was a sink in another corner with rusted fixtures and green baked-on guck covering the drain and metal pedestal. I looked at Pat and instinctively reached for the security of the hand sanitizer inside my purse as I waited for someone to bring us Ben.
When I saw him my heart ached. He was dressed in one of the many pairs of footy pajamas we had brought with us from home. Someone must have sent them over in an effort to ameliorate the bungled events earlier in the day. Even though they were size 6-9 months, and Ben was 12 months old, the pajamas hung loosely off his skeletal frame, like a tent flapping in the wind. Gaunt and nearly translucent, his delicate blue veins wound visibly beneath the surface of his skin. But for his eyes, which glistened with the same gentle kindness that stole our hearts in the video, I wouldn’t have recognized him. The nurse brought the baby to Pat, carefully setting him in his arms, and smiled kindly at the two of us. Then she handed me a diaper, said something to Tamara, and walked away.
He was so fragile we found ourselves whispering in his presence. Except for the eyes, this was not the cuddly baby we’d come to know and love in our dreams, the Ben in the referral photos generously displayed throughout our home. Something clearly had gone awry in the months since the referral. One of the first things I noticed was the way his hands shook when he tried to lift his wobbly arms. Unlike Sophie, he was hungry for touch and showed no hint of distrust. When it was my turn to hold him, he weakly but without hesitation reached for my face, outlining my nose, eyes and lips with long, slender fingers. Despite his physical condition, he was tender, gentle, and peaceful, just as we remembered him. He was also seriously ill.
When I look back at this moment, I can’t help but compare Ben to Peter. Ben’s issues were substantial, as we were about to learn, and we would be subsequently advised not to take them on. But then two months after Ben, the same set of experts told us Peter was in relatively good shape and so I forced myself to resist and ignore powerful instincts telling me otherwise. Ben is destined to have unfortunate, unfair, and enduring problems, just like Peter. Of this there is no doubt. But strong intuition tells me that he’s free of the psychic wounds that ravage Peter’s soul and mind, the demons that without apology try their best to scratch and gnaw at the very fabric of our family.
After giving us ten minutes to just quietly hold and look at Ben, Tamara dangled the diaper in the air and asked whether one of us wanted to change him. I laid a receiving blanket I had brought in my bag to cover the filthy floor and Pat put the baby gently on his back. We pulled off his pajama bottoms, surprised he wore nothing else except a diaper. The hospital must not have embraced the orphanage’s practice of multi-layer dressing. His knees were so knobby and his legs so thin they looked like Tinker Toy sticks attached at the middle with tennis balls. In fact, the sight of his legs alarmed us so much we asked whether we could remove his top and look over the rest of his body.
I don’t know whether the hospital would have allowed this, the nurses and doctors wouldn’t even let us see where he slept, but Tamara is a truly kind soul who wants the best for both child and prospective family. “Just do it,” she said. “But quickly.” And so we did. We found that he had an equally thin torso and a significantly sunken chest. As my mind began to scan the dozens of articles I’d nearly memorized about international adoption medicine, my sense of worry escalated. A “conclave” chest is a prominent feature of Fetal Alcohol Syndrome. At that point I had no choice but to assume a more investigative role, and so with apology in my heart I poured over his downy body, inch by careful inch, for worrisome signs, taking photos to send Dr. Aronson. I noticed features of his face that weren’t obvious from the video or referral photo and noted them in a little notebook. His chin, for instance, looked underdeveloped, at least to my untrained eye, but he did have a philtrum.
Dr. Aronson sent a sheet of square stickers with instructions to place them in the center of Sophie and Ben’s forehead and take photos from the front and side, with face and lips relaxed (not smiling). She would use these photos in conjunction with a computer program that evaluates facial features against norms for purposes of FAS identification. The sticker on the forehead provides a scale from which to calibrate the measurements. The program allows the physician to more objectively evaluate the philtrum, the upper lip, the length of the eye openings, the position of the ears on the head, the shape of the ear folds, and a few other anatomical anomalies suggestive of alcohol exposure.
After spending half an hour with Ben I knew we needed to get the photos to Dr. Aronson immediately. Tamara already told us the post office in Biro had fee-based public Internet access. I would spend much of the evening downloading the pictures and composing an email to Dr. Aronson that could then be sent from the post office in the morning. Although Pat was concerned too, his alarm bells weren’t sounding as loudly as mine and for his sake, I struggled to keep my anxiety in check. I wanted Ben as much as Pat but I was terrified of his physical condition. He was sick, certainly, and we needed information on his medical condition, but there were other worrisome signs unrelated to illness. I took the pictures of Ben as Pat looked worriedly on, trying to distract him so that we could capture the baby’s face and profile at the appropriate angles.
Although we would later take the sticker pictures of Sophie, neither one of us felt the need to put her through the strange ritual that first day. With proper food, medical care and love, she would be just fine, more than fine, in fact.
Despite having been introduced for the first time only hours earlier, I could appreciate that Sophie’s mind is her most exquisite, intriguing feature. I also was comforted to know, as I had learned in our adoption class, that the kind of cerebral prowess with which our daughter is possessed is incompatible with Fetal Alcohol Syndrome. Unfortunately, Ben was a different matter.
I finished my un-motherly probe as quickly as possible and then Pat and I fumbled to change and dress him. We played for a few minutes more, all the while trying to assess where he was in terms of developmental milestones. At twelve months Ben could stand and take a few shaky steps holding onto our fingers or the edge of the tattered couch. We took this as a good sign. But when we pulled out a new toy from my bag, a hard plastic figure that came apart in three places, he made no move to pick it up. When we held it to his face he would look at it, and when we put it in his hand he would hold it, but he wouldn’t pick it up or manipulate the doll in any way on his own. I knew this wasn’t good. But then he also was intently interested in Pat and me. He made eye contact, he smiled, he explored our faces and outlined the curve of our fingers, and he reached out to us an hour later when the nurse took him away. This part seemed wonderful, so wonderful in fact that the entire episode left us weepy, happy, scared, and hopelessly confused.
That night I wept quietly while Pat slept. We played Crazy Eights and Spades for an hour, watched an episode of the Family Guy on our laptop, split an Ambien tablet and finally turned out the lights. My racing thoughts, however, were no match for the mild sleep-aid our doctor encouraged us to bring on the trip. Although I had written the email to Dr. Aronson and attached the photos, I was frustrated that I had to wait until morning to send it. I might have been less troubled that night had we been able to talk to the doctor before we left the hospital but a cursory search by Ben’s nurse failed to locate her. We had endured a ten-hour flight, a three hour drive on a partially paved road, had been dumped on the steps of the Baby Home by a disgruntled teenager, told there was no baby at the orphanage fitting Ben’s description, screamed and panicked until he was located, driven back to the orphanage to meet Sophie, later taken to a nightmarish hospital to find Ben, and been confronted with a baby who had deteriorated significantly since May and whom I now understood was afflicted with FAS. In short, it had been a very difficult day (or two).
The rest of our time in Biro was spent getting to know Sophie and trying to unravel the mysterious circumstances of Ben’s health, including why his present condition contradicted all the information in the medical report Adopt Through Us had sent us. Later the second day, Dr. Aronson emailed back and said it was imperative that we measure his head circumference and get a current, accurate weight. She didn’t want to say too much more until she had these additional facts before her.
The doctor at the hospital was neither kind nor helpful. She told us Ben had a digestive problem that prevented him from eating and that we should take him to a specialist in the States when we got back. She explained that he had to drink formula in very small quantities several times a day because he couldn’t hold down much food at one time. I later asked to feed him and was brought a bottle with an ounce or two of watered-down formula and a nipple with a hole so large I could have popped a blueberry through it. He didn’t want the bottle when I offered it to him but later, when he finally took a few slurps from the giant nipple, the contents came immediately back up.
After that, Pat and I asked to see his medical records but the doctor refused. We measured his head circumference ourselves and wrote down the results for a later email to Dr. Aronson. Current weight was given in kilograms and when I pulled a conversion sheet from my bag, I was devastated to realize that Ben weighed slightly less than 12 pounds at 12 months of age.
Having an emotionally charged argument is especially interesting when the parties arguing need a translator to convey what they’re screaming about. The doctor refused to show us the medical records, Adopt Through Us was incommunicado, and no one else could tell us what was wrong with Ben. I was near the end of my rope but having to pause every few words so that Tamara could translate made it difficult to sustain my target level of outrage. When I threatened to find the mayor of the town and told the doctor she was breaking all kinds of international laws by withholding disclosable adoption information, she finally yielded. I’m not aware of any actual laws that were broken, but I was improvising and on a roll. Pat later told people that he was thinking of finding a priest to perform an exorcism on me. I was mad, really mad.
After conveying my thoughts, concerns, threats, and intentions in very clear and specific terms, the doctor said the records did exist but they were archived and would take some time to locate. Pat and I said we could wait. This infuriated her even more. Eventually she left and came back twenty minutes later with a fat file that she handed us, knowing full well we didn’t speak Russian. When we asked Tamara to translate the reports, the doctor stopped her, saying she had no right to review the records because she wasn’t a prospective parent. At that point Pat lost it. He turned red as his facial muscles tensed and his hands opened and closed reflexively in preparation for a possible rumble.
We eventually won this inane fight and Tamara read us the records while I jotted down notes. The medical report forwarded to us from Adopt Through Us, it seemed, belonged to a baby other than Ben. I had the report with me and none of the measurements or birth information matched his real records and the disparities were not in Ben’s favor. The real medical records showed his weight and head circumference measurements had been dismally (and consistently) deficient since birth and that he’d been given a very low Apgar score. There were also copious notes about his inability to feed and tendency to vomit.
When confronted with the evidence, the doctor refused to offer any explanation or assume any responsibility for the hospital having sent the wrong baby’s records. Perhaps she knew all along and this was a common scam to lure people into traveling, figuring once they were in Russia and spent time holding a baby, they would come back for the second trip and finalize the adoption no matter what the child’s condition. Maybe she was doing it for the baby. Certainly possible. One aspect of this part of our journey, however, will forever leave me scratching my head. How was sweet, gentle Ben able to appear so lively in the referral photo given the compromised state of his health? Maybe the nurses tucked a few extra layers of clothes under his outer layers to make him look more robust. Unlike other videos, the woman with Ben did not undress him but rather spent a lot of time tickling him, which in hindsight may have been a deliberate move to disguise troubling signs. Whatever the case, the reality is that the video even fooled Dr. Aronson, which I imagine is a very difficult thing to do.
The other reality is that Pat and I were alone in Birobidzhan, thrilled with Sophie but heartsick over Ben. There was a horrible decision looming over our heads and we spent our last two nights in Biro taking walks and talking late into the night in the quiet of our hostess Galina’s bedroom. We had emailed Dr. Aronson the measurements and other information and had no choice but to wait and keep calm until she replied. There was nothing else to do as Birobidzhan has no real restaurants or other venues to distract us.
Galina proved a lovely hostess, and though she spoke little English, she knew something was terribly wrong. She did her best to comfort and ease our strain, cooking three meals a day and washing and ironing our clothes. She even ironed and starched Pat’s boxer shorts, something he never hopes to experience again. She had a 7-year old grandson, Bogdan, living with her on a fold-up cot in the corner of a room.
We knew in advance of our trip that our hostess had a child, so we brought a Spiderman Lego set for him. I enjoyed watching Bogdan play with the Lego’s before dinner and marveled at the extent of his appreciation and enjoyment of such a modest gift. A couple of nights Pat and I even watched Russian soap operas with Galina after dinner.
But leaving proved difficult, very difficult. The day before, a little boy came up to me while I was playing with Sophie and held out a picture of a man and woman. Tamara said he wanted me to know that he was being adopted and that the people adopting him were also adopting his infant brother. He kept asking Tamara to make sure I knew his brother was going with him. He also said he was Sophie’s best friend, that he loved her, and that she was his “sister”. I was so struck by this precocious child’s ability to understand the concept of family, and his ability to bond with Sophie despite the stark environs of the orphanage, that I asked Tamara whether she knew how to get in touch with his new parents. I had taken some pictures of the boy holding the photo of the couple and I wanted to email them.
Pat and I have since become very close to this couple and their two boys, and even though they live in Colorado, we see them at least once a year. But that day the encounter with Sophie’s best orphanage friend had a profoundly unsettling effect on me. We were about to say goodbye to Ben and I knew intrinsically that we wouldn’t be seeing him again. I was hoping for a miracle, of course, but my instincts told me that Dr. Aronson’s report would be grim. We had left for Russia with Ben’s nursery completely finished and waiting for him. We had lived for months as though he was already part of our family. With naïve hope and optimism, friends and family had given us baby gifts, some even monogrammed with the initials BGL, for Benjamin Greene LoBrutto, a name chosen to honor a favorite relative who died in his late 40s from lung cancer. But there I was, resigned to walk away forever. I knew I was about to trim the corners of what family meant to me in a way Sophie’s little friend in the Baby Home steadfastly refused to do.
Saying goodbye to Sophie, knowing we were leaving her in that desolate place for an indefinite period of time, was incredibly difficult. Casting Ben from the place he held in my heart left me feeling even emptier than I felt on the days, seven years separated, that my mother and father died. The fact that Pat hadn’t yet allowed himself to confront this reality made grappling with my feelings even more difficult, and precarious. He still was consumed with worry over what we would need to do to make Ben well, what specialists we would need to consult, and whether we could get him help in Russia during the month or two before we came back. We were scheduled to spend a few days in St. Petersburg as a side-trip on our way back to the U.S. and Pat wanted to get on the phone and track down medical help as soon as we arrived.
I kissed Ben goodbye and choked back the tears. If I didn’t stay strong I would crumble, maybe even disintegrate right there on the filthy floor of the hospital’s pediatric and obstetrics ward. I needed to focus on Sophie and my husband. Pat’s state of mind worried me terribly because he was still clinging to the idea of impossible hope, even redemption, when it came to Ben. I knew he was going to crash, that the facts would soon prevail over wishful desire, but I didn’t know when. All I could hope was that I’d be there to catch him when he fell.
January 28, 2010
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
August 28, 2007. One of my more troublesome fears is that my son one day will hurt me. Days like today remind me that such fears are not unfounded. “He’s yours,” I call as Pat walks toward the car. I have delivered Peter to his office. I tell him what happened and leave, my heart banging widely with embittered surrender. For the third time in as many days, Peter has launched himself like a grenade, this time charging me from behind, fists drawn and head down, poised for assault. He was warned at breakfast that this would happen if he started hitting himself or came after me again. His emotions continue to swing like a pendulum hyped on speed, making me worry whether the Risperdal Peter takes to control behavior is failing our family or whether his symptoms are on the rise. He spends the morning cycling through several rounds of nonsensical laughter and unprovoked sobbing, crescendoing all the while toward a full-scale tantrum, the tones of which are evolving in a dangerous direction. Today I can handle him physically, but in a few years he won’t be so easily subdued. I turn on the “The Last Unicorn” for Sophie when we get home from running errands and I sit with her for a few minutes. Both of us are relieved to be free from Peter’s demons, at least until dinnertime, when father and son return. Later I surf the Internet for boarding schools that accept children with learning and behavioral difficulties. I find a school in Connecticut that accepts students as young as third grade. I lose myself in this shameful fantasy only to be catapulted back to reality: the tuition, I discover, is over $100,000 per year. I kiss Sophie goodnight and watch as she rocks back and forth in her bed, upheld arms casting shadows on the wall in rhythmic exorcism of the day’s stress. I walk over to Peter’s room next, thinking about the toll our family circumstances are taking on Sophie. He smiles at me, happy and sleepy. He has forgiven himself, or maybe just forgotten the day. But what’s clear is he’s forgiven me. He says I’m the best mommy ever.
Chapter 9: Russia Part I (Meeting Sophie)
Once I recovered my voice, the questions, along with a few colorful insults, flew like poisoned arrows from my mouth. I was done with pleasantries. What do you mean he’s not here? Where is he? We came from New York, damnit. New York. Did you know that? It’s halfway around the world. Can I show you a map? Find our child. Find him now!
The casual arrogance in the man’s voice, which I first mistook for politeness, infuriated me. I became increasingly hysterical and wild-eyed. The words spilling from my mouth were coming from someone I barely recognized. Pat knew I was dangerously close to blowing my lid and so he put his hand on my shoulder to signal that he would take over the questioning. When he did, his voice came ominously from the bottom of his register.
Whatever Pat said had some effect because we hastily were ushered into the man’s office, where we learned his title was orphanage Head Doctor. We would meet other orphanage doctors throughout our trips but we never spoke to this man after that first fateful day. Pat and I sat down in his computer-less office, both of us rifling through stacks of papers in desperate search for Ben’s paperwork. A woman came in and wordlessly offered me bottled water and Kleenex, though I wasn’t crying. I was too incensed and terrified for tears. We had traveled halfway across the world and without hint of apology were being told that a mistake had been made. I was coming unglued at the seams.
“You should call your agency about the boy,” the doctor said, skimming our documents. “There is nothing I can do. Come back at 3:30 when the children wake. You can meet the girl then.”
After that he made a brief phone call, barking orders of some kind or another in Russian, then stood up and escorted us outside. Pat and I scanned our grim surroundings and wondered whether we were expected to walk back to the apartment. All the buildings looked the same. Without signage or even slight differences in architecture, there was no way to distinguish one from the other. I wasn’t at all sure we could find the apartment.
Thankfully, the surly teenager and driver pulled into the circular driveway within a few minutes of our expulsion. The Head Doctor must have called them. They drove us back to the apartment where we found a small crowd of women standing just inside the door. Heated discussion stopped as soon as we stepped inside. After introductions and repeated apologies for the mix-up, as well as our frigid treatment by the girl with bi-colored hair, a woman named Tamara explained the genesis of the confusion. Tamara, who would be our translator for the rest of our time in Russia, told us she had located the baby and would take us to him after we met Sophie. The orphanage didn’t know who he was because he lived at the hospital, which was in a separate section of town and not part of the orphanage system. The Head Doctor must have read this on Ben’s paperwork but obviously decided to let someone else break the news. Tamara couldn’t tell us why or what was wrong with Ben but she did know he had been hospitalized since birth.
None of this, of course, had ever been mentioned to us. Ben’s medical report did in fact state that he resided in the Baby Hospital, but when I asked what that meant, Penny at Adopt Through Us assured me that it was the name they used for the infant ward at the orphanage, end of story. Even Dr. Aronson accepted this explanation. But Penny was wrong. I tried contacting Adopt Through Us using the rented cell phone as there were a number of urgent questions Pat and I needed to ask. This time I managed to get through, but no one other than the receptionist was in the office. After listening to my distressed voice and frantic plea for help, the woman assured me that someone would call back soon, either on the cell phone or Galina’s direct line. Those were the first and last words we heard from Adopt Through Us until we were back in the States, 10 days later.
We left with Tamara, saying goodbye to the other two women who were “coordinators” of the process in Birobidzhan, just as Sergei was in Moscow. Tamara was comfortable navigating around the orphanage unescorted and so she marched us straight into a large hall with brightly colored murals and sunlit floor-to-ceiling windows. I recognized the room immediately from the referral photographs. Birobidzhan can sizzle in the summer and I knew those windows would act like a heat lamp on blistering hot days. In terms of weather, at least, we were lucky the entire trip. The temperature never rose above the low eighties and the nights stayed comfortably cool.
Sophie walked in right after we did, shoulders back and leaning forward, eyes locked onto ours. One of her caregivers followed and after saying hello, took a seat next to Tamara and began talking in Russian. Although this was a once in a lifetime moment for us, albeit with a strange Russian twist, for Tamara and the caregiver the scene was simply part of their daily routine. A chance to sit down, catch up or maybe gossip.
Pat and I smiled at Sophie and began saying ridiculous things like “what a pretty girl you are,” or “come show me your dress,” in over-enthusiastic English, which we knew she couldn’t understand. She wrinkled her nose and narrowed her eyes, confirming that we really were making fools of ourselves. She looked like a baby much younger than two except for her eyes and facial expressions, which were those of a much older soul. The keen intelligence so evident in her eyes made Sophie stand out from the rest of the orphanage children like a freckle-faced redhead in the middle of a bustling Beijing market. The other children consistently ran up to us and wrapped their skinny arms around our legs, plaintively calling “Mama”, “Papa”. There is nothing more heart wrenching than being the object of an orphan’s unattainable desire and Pat and I choked back tears nearly every time one of their little bodies clamored to grab hold. Sophie, however, was not of that ilk. She was a cool cat who kept a watchful distance. By the end of our trip she would claim us with possessive entitlement, but not just then. We had yet to earn the honor.
Instead, she studied us with the intensity of a scientist puzzling over a newly discovered organism, careful not to express any opinion until all the facts were gathered and analyzed. She had gumption galore. We made a game of scrutinizing her with the same curious vigor with which she approached us. I poured over every aspect of her, instantly memorizing the hue of her skin, the shape of her ears, the deep, perfect groove of her philtrum, even the clumsy, comical way she motored around the room. But in truth this was no game. Despite the plaguing worry over Ben, the moment was pure bliss and has become indelibly stamped into my memory. For the first time I was meeting our daughter. I felt the way a new mother must feel in the moments after birth, when she first lays eyes on the miracle of her child.
Unlike newborns however, Sophie appeared in a pale pink cotton dress, tight enough across the chest to make the seams stretch, and a worn pair of boy’s sandals. Her full face and fiery eyes belied the fact that she was significantly underweight. The little bit of hair she had was light golden blonde, with a swirling cowlick prominent at the center above her brow. Her thinly stretched skin was speckled with angry bruises and she was covered with mosquito bites.
She was also beautiful. The way she circled around us, studying Pat and me like laboratory animals, inching slightly closer with every lap, enthralled us beyond expectation. Though hopelessly hooked, we weren’t sure how to approach her. What do you say to a two-year old child you’ve just met and who’s never heard the English language? Our initial attempts failed miserably. As though reading our minds, Tamara broke off her conversation with the caregiver, took Sophie by the hand and explained that we were her new Mama and Papa. The talk did not have the intended eureka effect. So in desperation I pulled a Fischer Price cell phone out of my bag, hoping it would entice her toward us. The flashing buttons and shiny colors did the trick. She darted over, grabbed the phone and retreated hastily to a safer distance. We watched and smiled broadly as she pushed the buttons. Then she began to “ouhh” and “ah”, the expression in her eyes softening from frank mistrust to unabashed joy. The phone had become a prized possession.
My digital camera was another source of fascination. She examined the lens with an analytical expression befitting a Wall Street banker. When the flash went off, she blinked with surprise, lost her balance, and plunked heavily onto her bottom. This made her laugh lustily. I smiled at Pat, confirming what he already knew. The chinks in Sophie’s amour were already showing, her guard was slipping away.
The next thing she did was truly amazing. Grabbing the camera, she turned it over and stared at her image. “Katya,” she said, matter-of-factly. Her Russian name was Ekaterina Shumilova. At barely two, and despite having spent the majority of her life in an institution, she recognized herself on the LCD monitor and implicitly understood the concept of photography. We would give her a new name, Sophia Katherine, but it wasn’t until the next trip that we started the transition, calling her Katya-Sophie at first, then Sophie-Katya, and then finally just Sophie. Our precious Sophie.
We would have more time with her in the two days that followed, time to take walks and play and get a more complete sense of her mischievous personality, but we didn’t stay long that first day. We were promised an opportunity to see Ben in the hospital and we didn’t want to be late. Kissing Sophie goodbye, to the extent she would permit, we left her with a small Winnie the Pooh photo album that showed pictures of Pat and me, our house, her room, and our child-loathing dog, Scout. We promised, with the help of Tamara’s translation, to return the next morning. We also give her a little pink gingham pillow with a photo of us I had slipped into the sewn-on plastic sleeve. Three years later, she is still sleeping with it.
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
August 25, 2007. I wonder whether Peter feels our topsy-turvy weather on a cellular level; his demeanor can fluctuate as wildly as the untamed rhythms of late August in the Hudson Valley. Some trees are beginning to turn already yet the thermometer reads 95 degrees. Peter complains on the way to the pool that I forgot to take him to the dinosaur movie. He is referring to “Dinosaurs Alive!” which we watched last weekend at the museum. He mimicked the movie for two days straight but now can’t remember seeing it. I can tell by the confused resignation in his eyes that he’s not making this up. I try without success to jog his memory. The good news is that on occasion he now trusts enough to confide in me what he appreciates, on some level, is a devastating impairment; the bad news, of course, is that he will always live with this devastating, unjust impairment. Peter’s bad brain days usually equate to bad behavior days. Today is no exception. Lost in the chaos of a tantrum, he swings at me and misses. He then turns his fist on himself, spit flying as he alternates between pounding his leg and punching his stomach. The guttural sounds are difficult to endure, the stares of friends and acquaintances don’t help. We need to leave. On the drive home I wonder whether (and for how long) my son would remember me if I vanished from his life for any significant period of time. The thought of falling into the abyss of Peter’s forgotten experiences makes me shudder. I punch the knob on the radio and try in earnest to forget.
Chapter 8: Russia, Part I (Where’s Ben?)
On August 8, 2004, Pat and I stepped off the ten hour Delta flight from New York to Moscow, hand in hand, and walked into the airport. The day we would meet our children was 36 hours away and my knees wobbled in anticipation. Ben and Sophie. Although Peter wasn’t then part of our adoption story, all paths were leading inexorably toward him, like snowmelt trickling through the forest to a mountain lake below, waiting quietly for the rebirth of spring. Peter would be reborn to us soon, but not yet. First we would meet his adopted sister and Ben, the boy whose cruel misfortune would become Peter’s salvation. Russian Roulette, orphanage-style.
The airport in Moscow makes JFK look like an exemplary model of civil planning. We began realizing this as soon as we tried passing through the double doors of the gate. Most double doors in large public places are designed to promote orderly egress and ingress. This is not the case in Russia. One of two doors is locked at all times, forcing stony-faced people to ram their way through the narrow single opening, saran-wrapped luggage in tow, while others are doing the same from the opposite direction. Though Russians are a very warm and genuine people in the intimacy and comfort of their homes, their public demeanor is the reverse. This gruff predisposition coupled with the constant frustration of having to navigate buildings, roads, airports, sidewalks and hospitals in a constant state of disrepair lends an angry pulse to the communal rhythm of the masses.
Pat and I struggled to elbow and shove our way through what resembled a glass-walled cattle shoot, furtively searching the crowd for our Russian guide as we followed the herd into baggage claim. We found him before too long, thanks to the handwritten cardboard sign that read LIBUTTI and the I LOVE USA baseball cap perched atop his balding head. The spelling of Pat’s last name, LoBrutto, wasn’t that close a match but it was encouraging enough to make us lunge toward him with relief, grinning like the dumb, bewildered Americans we were. His name was Sergei and he was one of the true jewels of our trips. Three years later, we’re still in email contact.
Our overnight stay at the Renaissance Moscow was brief but memorable. Shortly after we checked into our room we met two other couples traveling from Florida, also Adopt Through Us clients. Both had completed the first required trip, which Pat and I were just beginning. The purpose of this trip is to meet the child, spend time together and officially decide whether the adoption should be finalized. Many people scoff at this requirement, asserting that the Russians are capitalizing on the adoption trade, eagerly collecting the additional fees, charges, gifts and donations that two separate trips can provide. The fact that American adoption agencies counsel their clients to bring duffle bags stuffed with “gifts” – perfumes, handkerchiefs, wallets, small electronics, and “clean” cash (meaning no marks, tears or folds on the bills) – heightens this suspicion of impropriety.
So many aspects of this journey bothered or at times even offended me but not these particular requirements. Adopting a child is very serious business and prospective parents should be made to jump through as many hoops and over as many hurdles as necessary to demonstrate sufficiently their stamina and commitment. Though tempting, it’s a mistake to attribute the incredibly complex set of social and economic factors that lead to abject neglect and deprivation, such as that seen in Russian orphanages, to mere apathy and greed. Americans and Canadians and the occasional Europeans are taking away Russia’s unwanted children by the planefuls. People like Pat and I have been invited to help relieve this national burden, one child at a time, because Russia can’t care for its own. Not an easy thing to admit for a former Super Power and not an easy obligation to assume for people with ordinary means, talents and coping skills, pursuing the very ordinary and natural dream of becoming parents. Because of what happened with Ben, our agency worked out an arrangement with the local Russian government to allow us to meet and adopt Peter on our second trip, within 24 hours of meeting him. There was no time allotted so that the idea of Peter could blend with the reality of the boy we met, to reconcile the twinkle-eyed smile in the pictures with the stiff, robotic child we found ourselves facing in the orphanage. Two trips are good. Had the process worked according to design, had we met Peter and had the time to digest and consider what we observed before a final decision was made, the dynamic of our family might now be vastly different.
As for the gifts, the idea didn’t bother me so much after meeting the recipients, mostly kind people who lacked the money to buy vegetables or even replace a pair of thready, over-darned socks. The abject poverty was humbling to experience. But that night in Moscow, the gifts, the multiple trips, and a myriad of other complaints were hashed and rehashed with the two couples we’d just met over a four-hour dinner. The six of us sat around a table eating grizzly cheeseburgers and drinking beer and soda. Pat and I were thrilled to find ourselves in the company of other American adoption couples. Listening eagerly as they shared stories of their first trips to Tumen, an oil-rich region that is prosperous compared to Birobidzhan, we later peppered them with questions about what we could expect. One couple, Jackie and Sam O’Shea have become lasting, long-distance friends. They have a knack for injecting levity in situations where most would resort to tears or violence, and luckily for us, the O’Shea’s were with us on our return flight to New York, along with their newly adopted daughter, Natalie. Their humor and unabashed joy for their 5 month old baby brought welcomed reprieve from our worries on more than one occasion.
The other couple we met that night was as memorable and Jackie and Sam, but for vastly different reasons. Epitomizing all that is out of proportion with American society, they talked about buying babies, showing cash, making the deal, and “getting a kid”. They expressed anger over the fact they were adopting a boy even though they had requested a girl. The baby, as it turns out, had been quiet and withdrawn during their first trip. “He was floppy,” the woman said, shrugging her salon-tanned shoulders. “Like a rag doll,” the husband added. “The kid wouldn’t do anything.” They admitted with blasé that they had consulted no one regarding the child’s medical records, photographs or video and rolled their eyes when Jackie meekly asked whether they were concerned. Had Jackie and Sam’s impressions been different, or had the photograph of that baby’s hollow eyes not been stamped into my memory, I might have thought I dreamed them up. They were that crass, that naïve and that cartoonish. Unfortunately for the child, they were also very real.
The other interesting aspect of our one night stay in Moscow had to do with Pat’s crowned tooth, which came out in more than one jagged hunk during dinner with the beauty and the beast couples. Pat has an early history of poor attention to dental health and is paying the price now, in locations grand and modest, across the globe. Sergei was scheduled to pick us up at 11:30 the next morning for our eight-hour flight to Khavarosk, the nearest airport to Birobidzhan. Pat would have precious little time to find a dentist in Moscow who could repair his broken crown. Exhausted and suffering a toothache that was only partially quelled by a handful of Motrin and two bottles of Chinese beer, he tossed and turned throughout the night, grumbling in his sleep about the injustice of dental problems with the verve of a television evangelist. The next morning the concierge in halting English gave him directions to the American Clinic. I kissed Pat gingerly on his swollen cheek and wished him well as I watched him trudge toward the inner belly of the city.
Having nothing else to do, I waited in the lobby for Sergei. The couples from the night before had already checked out and I was too nervous and exhausted to read or make meaningful use of the time. But I did have the energy to people watch, which was both fascinating and stimulating. The hotel catered to an odd mix of business people, tourists, and families in various stages of adoption, and none of these factions seemed comfortable with the presence of the other. The crisp click-click of high heels and pointy men’s dress shoes were juxtaposed against the nervous, squeaky shuffle of the sneaker-clad adoption couples. The imposing, austere countenance of the predominantly Russian staff sharply contrasted the soft humming drawl and comfortable clothes of a group of elderly tourists from South Carolina. I found the whole scene a wonderful study in juxtaposition.
I became so engrossed in my observations that Sergei had to come and tap me on the shoulder. He whisked us in a panic to the American Clinic as soon as he heard his latest charge had ventured out on his own. At the time he didn’t appreciate Pat’s confidence in this foreign city or know that he had grown up on the tough streets of Brooklyn and spent the majority of his life happily combing every odd corner of New York City. Except for the excruciating pain part, my husband was thrilled to be given two hours alone to explore Moscow.
While we waited for Pat to emerge, well past the 11:30 scheduled departure time for the airport, Sergei and I became acquainted. He asked what we did for a living and literally jumped off his chair when he learned Pat was a fiction editor. It was a remarkably demonstrative move for a Russian out in public. But Sergei, as it turns out, is a voracious reader of American fiction, particularly science fiction and thrillers, two of Pat’s main genres. I also learned this unassuming, soft-spoken man who drives adoption couples around Moscow, orchestrating the endless appointments and appearances required to complete the process, held a Ph.D. in Cryogenic Engineering. But working as an engineer, Sergei couldn’t afford internet access or pay for his 9 year-old son to attend a week-long science camp. As an adoption coordinator paid with American dollars, he lives a respectable middle class life in Moscow. He has a flat in one of the newer hi-rises and is proud the building has two working elevators.
When I asked why he can’t work as an engineer, Sergei paused to consider how to explain the former Soviet Union’s philosophy regarding the education of its citizens. He told me that the Russian government, for instance, chose him and 30,000 other youngsters to enter university to study Cryogenic Engineering at no expense. His “selection” derived from his secondary school grades and achievement scores. Once his and the others’ education was complete, the government chose the 5 or 6 most accomplished among them for state-sponsored projects. The rest of the newly minted Cryogenic Engineers were left to fend for themselves, feverishly competing for the handful of remaining jobs in an incredibly specialized field. Sergei, though not one of the wunderkind, was lucky and talented enough to land one of those coveted, remaining positions. But his salary was so low he couldn’t afford to stay in his occupation and give his son the better life he envisioned for him.
We would encounter this phenomenon of over-education throughout both trips. Nearly every Russian we met as part of the adoption process was a doctor, lawyer, accountant or engineer but none was working in the field in which he or she had been educated. In this respect, Sergei and those like him aren’t much different from the hordes of discarded children warehoused across the landscape in decaying orphanages. Their hopes, talents, and potential contributions have been pulverized and forgotten under the impossible weight of a crumbling, dysfunctional system that notoriously assigned little value to the dignity and worth of individuals.
Pat and I were confronted with the harsh reality of this lesson when we arrived in Birobidzhan the next day, exhausted, excited and with his temporary crown intact. An indifferent, gum-chewing young woman and her driver met us at the airport in Khavarosk and loaded our luggage into a clunky Zil. I was desperate to go to the bathroom but the facilities in the airport consisted of a series of holes in the ground with foot imprints on either side to guide your stance. I couldn’t figure out how to manage the situation and was terrified I would slip and slide into layers of filth impossible to describe. So I decided to wait. As it turns out, I would wait, with legs tightly crossed, for nearly half a day. There are no rest stops on the poorly maintained road from Khavarosk to Birobidzhan.
The young woman and driver ignored us completely for the next three hours, talking loudly to themselves in Russian, pausing only to put their seatbelts on at police checkpoints and then unbuckling them as soon as we pulled away. I don’t recall either of them saying more than a handful of words to us the entire time. Pat and I whispered conspiratorially to each other at first, trying not to laugh at the absurdity of our situation, but then we fell quiet and let our eyes and thoughts roam. The landscape was desolate and overgrown, the road littered with potholes in the part that was paved and throwing up dirt and dust where there was none. Old women and young Asian men walked along vast stretches of road where there was no place to go or turn off for miles on end. There were groups of scruffy men sitting atop 40-year old trucks filled with watermelons, waving toothless grins as we passed. I also caught my first glimpse of the dachas, the little wood huts passed from generation to generation that Russian city dwellers escape to in summer. Despite cheery curtains and a few ragged flowerpots, for the most part these were grim, one-room structures without running water or electricity. There were few signs of life as we passed. I saw only one woman pumping water into a bucket by hand and another smoothing the hair sticking out of her kerchief as she emerged from what must have been an outhouse.
Although to an outside eye the dachas look like shanties slated for demolition, these rural huts are coveted. People in Russia, especially in the larger towns and cities, live where they are told. Only recently has the concept of property ownership come into existence and for most, it’s a dream far beyond their reach. But the dachas belong to them by birthright and can’t be taken away. And so with dedicated attention they continue to patch the leaky roofs and tack sheets of metal or plastic tarps over rotting exterior walls, keeping the elements and rodents at bay. Sergei told me that he went to the dacha belonging to his wife’s family on the weekends, about an hour’s drive outside Moscow. He hated going there, telling me he found it depressing and claustrophobic, but I had the strong impression that his was a minority view. The air is free from industrial fumes and the land, a swatch of dirt no bigger than the average American driveway, belongs to the Russian family and not the government. For that alone, I can appreciate their value.
After hours of monotonous, bumpy driving, we knew we had arrived in the birthplace of our children when we passed its only noteworthy landmark, a behemoth sign written in rusting Yiddish letters.
Birobidzhan is also known as the Jewish Autonomous Region, created by Stalin mainly to re-colonize Jews in Crimea, Belarus and Ukraine in the early 1930s. Five thousand miles from Moscow and approximately twice the size of New Jersey, it was envisioned as a Zionistic alternative to Palestine. Like so things Russian, the experiment failed miserably.
A few minutes past the sign we pulled into a housing complex and the aloof young woman turned around and announced our arrival at the apartment where we’d be staying. She pointed to the fourth floor of one of the buildings, handed us a key, and said someone would take us to the orphanage the next day. Pat and I had been extremely patient during this leg of our unsociable journey, but we balked at this news. Our agency unequivocally told us that we would meet the children that afternoon. We only had three and a half days in Birobidzhan and refused to surrender a single precious hour of time reserved for meeting and bonding with Ben and Sophie.
The woman seemed surprised that we weren’t willing to accept this news and said she’d come inside the apartment with us to make a phone call. She had someplace else to be, she explained, impatiently twirling the frosted blonde tips of her dark hair, and she wasn’t the person who was supposed to be dealing with us anyway. The actual guide and interpreter was sick. After much back and forth, the woman said she would drop us off at the orphanage and the driver would pick us up an hour and a half later. Hands on hips like the petulant adolescent she was, she said this was the best she could offer.
Galina, the woman whose apartment we were staying in was at work and there was no one else we could consult. We had rented an international cell phone that was guaranteed to work in Birobidzhan so we dug through our luggage, pulled out the leather case with the phone and instructions, and tried calling Adopt Through Us. Although we’d later be able to make a few calls, the reception was hit or miss. At the moment there was no connection.
As promised, they dropped us off at the door of the orphanage, which was about a mile down the road from the apartment, and drove away. Pat and I stared nervously at the structure before us and paused to consider our next move. Like every other building in Birobidzhan, the orphanage was a four or five story complex, built during the Soviet era in the late 1940s or early ‘50s. When people ask him to describe the condition and architecture of the buildings, Pat has devised a standard response. “Imagine this,” he says. “They were built in a month without plans or inspections then abandoned for ten years, at which point the Algerians came and bombed them; they were then abandoned for another ten years, at which point the Russian government, without repair or upgrade, brought in the people to work and live.”
The complex was surrounded by overgrown vegetation and the “playground” consisted of brightly painted truck tires cemented into the ground and the rusting metal frame of what had been a swing set. The grass was thigh high and the weeds grew unchecked, choking out the few neglected ornamental bushes that some hopeful person planted years earlier. There was no sign on the building or other indication of the entrance, so Pat and I approached what we thought was the main door and walked inside. A light-haired man about my age approached us and politely asked in halted English whether he could help. We told him we were there to meet our children, and we gave him Ben and Sophie’s Russian birth names. He was confused and didn’t understand why our translator wasn’t with us, and all we could do was shrug and agree that the situation was not what we had expected.
The next thing he said sent my heart racing and the contents of my undigested airplane lunch gurgling toward my throat. “The girl is here,” he said. “But it’s nap time. You’ll have to come back later. We don’t wake the children up.” And then without a pause, the bombshell dropped. “There is no boy here by that name.”
Pat and I stared at each other, dumbfounded and incapable of responding.
Where was Ben?
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
August 24, 2007. The kids and I are at the local pool and I’m sitting on a lounge chair next to my friend Wendi, who has two young boys. Though Peter has always made her six-year old uncomfortable, something is changing, perhaps a turning point in Peter’s development. Gone, at least for now, is his standard approach to socializing: run up to a child’s face and blabber something incomprehensible or scream outright. This beautifully complete boy is playing happily with Peter. I watch them dodge imaginary volcanoes through wet grass and realize my son is acting like a normal child. He is not off by himself, repeating the few same sequence of events – like crash the truck in the sandbox – with agonizing banality. Though I can’t be certain, I think he has made a friend. Yesterday the developmental pediatrician asked about friends and he failed to name this boy with whom he now has been playing for weeks. He has shown interest in other children before, only to forget about them once he hasn’t seen them for four or five days. But I tell myself that Peter won’t forget this kind-hearted boy he has known for two years but with whom he is only now growing comfortable. Last night at the county fair he kissed his friend, much to the boy’s surprise, on the back of the head while riding the helicopters. I quietly suggested afterward that he limit kissing to family members. Peter doesn’t understand social nuance and was only trying to show affection. I want him to know the beauty of human connectedness so badly and I pledge to help him cultivate this surprising sprout of friendship. A life without friends is hard to imagine and until recently, it was hard to imagine the crowded spaces in Peter’s mind ever clearing enough to contain friends. Smiling, I turn to face my friend Wendi, who is also watching the boys, and I know she understands.
Chapter 7: Sophie
Life has an odd way of instructing sometimes and the take away lesson from the failed domestic adoption was unexpected and as it turns out, a blessing in disguise. I was talking to my girlfriend Suzanne in Atlanta one afternoon, catching her up on the status of our still unscheduled Russian trip and the surreal experience with the Tampa baby. She and I worked together as enforcement attorneys at the EPA’s regional office in Atlanta for eight years before I moved to Manhattan and married Pat. I smile fondly whenever I think of Suzanne’s sassy voice and those impossibly tight curls that assume the same position no matter how her haircuts change. She is one of those wonderful New Yorkers living happily in the Deep South with the same brilliant pizzazz and gumption I once saw her display as she wrangled to snag the last pair of size 7 boots at a Macy’s shoe sale. She has an uncanny ability to make lemonade out of lemons and I rely on her greatly, despite geographical distance, when I need a lift.
On this particular day, and in typical Suzanne style, she let me ramble just long enough to feel better and then posed a question. Now that we had accepted the idea of adopting two children at once, and even figured out a way logistically to manage the insanity of the Tampa circumstances, why not ask Adopt Through Us whether we could bring another baby home with Ben?
A puckish question, to be sure, and one that made me smile. Uncharacteristically, I kept this idea to myself for a number of days. I tend to share almost all my thoughts and ideas with Pat, in stream of consciousness style, because he’s usually a sympathetic but logical sounding board. But I was having a hard time gauging the possible range of his response and he does have his limits. For instance, I don’t have a horse, more than one dog, a duck or any chickens. Was there no one to stop me, I might have acquired many more animals than we currently own over the course of the last several years. Our very old house sits on eight acres and is plenty large enough for the furry friends of my dreams. But Pat unequivocally has drawn the line at one dog, two cats, one rabbit, four frogs and a small school of fish (the children caught the aquatic members of the family in a nearby stream using Dixie cups). I can’t much blame him. He’s the one who lets the dog out in the middle of the night, throws blankets over the bunny hutch in subzero temperatures, disposes of the dead creatures the cats catch and rescues the occasional minnow found flopping on the floor whenever there’s a botched water changing episode.
Adopting another child isn’t the same as acquiring a zoo, but for Pat, the words zoo and life were more synonymous to him than most would consider healthy. The past year of our life together, on the best of days, conjured up images of riotous chimps and squawking birds, causing Pat to duck for cover at nearly every turn. Between fertility treatments, the ski accident, the decision to adopt, the rejected Russian referrals, and the Tampa fiasco, we both felt like we’d been plopped, unceremoniously, into a pressure cooker, and left to boil. Just when we thought the worst was behind us, Pat’s 80-year-old mother fell and broke her shoulder while visiting from Florida. Scared and hurt, there was no way she could fly home and fend for herself. Although I was still in the walking boot, weeks away from being able to drive again, I found myself conscripted into caring for my mother-in-law 24/7, a woman I barely knew at the time. She since has moved to New York to live near us and has become truly one of the great blessings in my life. I miss my own mother with waves of intensity impossible to bear at times and yet this spunky little Sicilian woman, unexpectedly, has become mother, friend and confidante. I value her opinion and insight, admire her sage sense of humor and love her deeply. She has indeed become a mother to me, in the best possible sense of the word. But at the time, and in all honesty, the situation overwhelmed me.
Night after night, when Pat and I lay in bed, we didn’t know whether to laugh or cry. Thankfully, most often, we laugh when given the option, dissecting the absurdities of the day with what I’ve come to believe is restorative deprecation. In other words, we make fun of ourselves. Often and without mercy. But still, there was a lot on our plates, and I didn’t know whether in good conscience I should raise the issue of adopting another child just then. We were dodging catastrophes faster than the ladybugs on the windows could reproduce, and no matter how comic the events of our lives might play out in a Steve Carell movie, I knew better than to assume that Pat’s highly evolved sense of humor and gentle disposition was limitless.
So, before I made any decisions that would involve Pat, I called Penny at Adopt Through Us to see whether a second child was even possible. The short answer was “yes, of course!” The less clear, sticky part had to do with fees and expenses and whether a second referral would substantially postpone or even jeopardize our trip to meet Ben. Penny promised to call back as soon as she had more information. Before we hung up, she asked whether we preferred a girl or boy. “A girl,” I blurted. As long as gender selection was an accepted (and expected) part of the Russian adoption equation, there was no doubt in my mind. I wanted a snuggle bunny with which to cuddle and play dolls with on rainy Saturday mornings, a daughter to whom I could one day share the secrets of the water balloon babies.
I remember distinctly the moment when the subject could no longer be withheld from Pat. Penny had called back with the answers to all my questions and asked in return that we make a decision by the next day. Only that morning, according to Penny, the agency had received a referral of a two-year old girl living in the same orphanage as Ben. The referral was ours to take but we needed to move quickly. Other prospective parents were waiting in the wings for just such an opportunity. The message was clear: talk to Pat.
I found him in the kitchen making lunch out of hot sauce, goat cheese and Italian bread. With the help of Vicodin, his mother was sleeping fitfully in the nearby sunroom, propped up with a dozen pillows so that she could watch the swarm of ladybugs that had been crawling up and down the windows for days. Busying myself with emptying the dishwater, I quietly explained Suzanne’s idea, my phone calls to Adopt Through Us, and the news of the referral waiting to be delivered to our doorstep.
Pat didn’t say a word, though he continued to shake neon green hot sauce out of the narrow bottle with more energy than the task required. Although he didn’t look angry, he wasn’t exactly combing the drawers for celebratory cigars. Instead, he walked out of the room, still wordless, went into the bathroom and came back. “I’ll think about it,” he said. I didn’t have the gumption to tell him he’d have to think quickly. My decision had already been made, as the thudding in my heart reminded me. This mattered, more than I realized maybe, and the clock was ticking. The possibility of completing our family in one fell swoop very much appealed to me.
In fact, the possibility of the second referral quelled the nagging ache that surfaced whenever I thought about whether, realistically, we would find the time, energy, and money to go back to Russia to adopt another child. Hard as it is for me to accept some days, Pat was in his fifties and I was nearing forty (in my heart of hearts I’m only 25 and Pat is 28). Without the driving, raw desire to have a child propelling us through the adoption process, I wasn’t sure we’d be able to rekindle the desire, and energy, to do it again. We naturally would become contented with Ben, overjoyed and satiated by his presence in our lives. I knew it would be all too easy to convince ourselves that he was enough, that he didn’t need a sibling with which to share his childhood or lean on in the years of life that would stretch beyond our own.
The storm that had been threatening all day finally unleashed and jolted us both from our revelries. A bolt of lightning stirred Pat’s mother and I heard her moan weakly from the other room though she didn’t awaken fully. I imagined the ladybugs losing their grips on the window screens as staccato sheets of rain hit the house, one slanted burst after another. Pat put his sandwich down and looked at me.
“You really want this, don’t you?” he asked. His eyes were soft but full of worry.
“I don’t want Ben to be alone.”
“A girl?” He knew the answer but wanted to hear it anyway.
I shook my head yes.
“A girl would be nice.”
The conversation ended without another word and life resumed its hectic pace. The storm awoke Pat’s mother for good and she needed help changing positions. Pat may have needed the sizzling comfort of hot sauce to become sufficiently steeled for the conversation, but in the end, he never even flinched. I would have been happy to adopt two boys when the chance arose and I managed to walk stoically away when that chance blew up in our faces. Pat understood, more than anyone, the extent of my efforts to achieve motherhood and build a family. He also knew the Tampa debacle had been my one and only opportunity to experience a baby from birth. To this day I’m not sure whether he wanted to adopt a second child at the same time as Ben or whether his goal was simply to make me happy.
Every day Pat gives me the extraordinary gift of knowing I’m completely loved. He nourishes my soul in a way that’s more valuable and enduring than any possible combination of possessions. I’m very lucky in this regard, and I know it. That day he chose to illustrate this poignant fact by agreeing to adopt a second child. The reason I don’t brood over whether Pat’s decision was coerced is because it turned out to be the best decision we ever made, a wondrous gift to us both. Sophie makes us laugh on days when only tears come naturally and reminds us why we began this journey in the first place. She is perfect in a delightfully imperfect way and has brought immeasurable joy to our lives. She doesn’t, though, go in much for dolls. On rainy days we snuggle and play, but we’re more likely to play a zany version of zoo with her mounds of stuffed animals, dressed in the clothes she stripped from her flung-aside dolls.
The correctness of our decision however, was not so apparent at first. In fact, when Adopt Through Us sent Sophie’s picture and medical report, we were a little taken aback. She looked more like a ten-month old baby than an almost two-year-old child and she was stuck in the bed of a plastic truck, making the poor baby look like a thanksgiving bird. She was not pretty in the classical sense and she looked bloated and distressed. These are not kind thoughts to have about an orphaned child in need of a family, but they were our initial impressions. Luckily Pat and I are not such horrible people that we ever allowed a child’s physical appearance to impact any of our adoption decisions. If she was healthy, we wanted her.
But there were aspects of the photograph that also contradicted the medical report. For instance, despite her robust appearance in the photo, the medical report stated her birth weight was low and her current weight barely reached the third percentile. Later we found out that the orphanage made a practice of extreme layering, meaning she wore panties, an undershirt, a pair of long underwear followed by wool tights, thick socks over the tights, and then a pair of long pants, a long-sleeved shirt, and a wool sweater. Knowing this explains her balloon-like appearance and the distressed expression on her face but we weren’t aware of this practice at the time.
Instead, we just thought she had a very large, puffy head. Though we joked about it, we never gave it serious consideration. My older sister and brothers still claim I was born with a rectangular-shaped head and they gleefully produce photos in an effort to substantiate these ugly allegations. They do this to tease me, of course, but what if they were right and I had been orphaned and put up for adoption in Russia? Would I have been rejected by middle-class Americans because of the shoe box shape of my head? Maybe these imaginary parents would have thought I had perinatal encephalopathy or some other alarming medical condition. As long as Dr. Aronson gave her a positive review, we would say yes. She would be beautiful in our eyes, if not to the world at large, and that was enough.
The video arrived a day or two later. Her physical appearance had changed in the intervening months. The film was recorded in summer and she had been liberated from the suffocating layers of clothes. Also, her hair had lightened from dark brown to golden blond and her face looked slimmer and much more lively. The video camera showed her tottering around the edge of a play hut, holding onto the rim for support. Her eyes were closed the entire time, about three and a half minutes. We could hear a caregiver in the background urging her to do something, presumably open her eyes, and we held our breath as we watched our future daughter pause to consider the request. When the revelry broke, she smiled slightly, chortled quietly, and continued on with her business, eyes closed.
We shared this video, as we had all the others, with friends and family. While waiting to hear back from Dr. Aronson, we were anxious to know what people thought of her unusual behavior. Most scratched their heads and offered various theories regarding why a toddler in a Russian orphanage might act this way. Some were simply stumped and offered no opinion at all. But one person whom I won’t name suggested that Sophie had serious brain damage and another chimed in that we would be making the biggest mistake of our lives if we went through with her adoption.
One of the problems with planning a family through adoption is that it transforms what should be a closed-door experience between two loving people into business conducted in a public forum, complete with fans and hecklers. But in this instance, the anger and resentment I felt toward the nay-sayers in the stands was of my own making. We had asked for these opinions and I unfairly had expected those within our inner circle to have the good graces to keep their mouths shut in the absence of having something instructive to say.
Luckily, Dr. Aronson was not worried and we were overjoyed with the news when her email finally arrived, as usual, in the middle of the night. She was amused by Sophie’s decision to navigate the taping session blind.
What Dr. Aronson saw in her behavior were streaks of independence, a sense of humor, a keen (and brain-preserving) ability to make her static environment interesting, and an overlaying stubborn disregard for authority. In short, Sophie intrigued her. “This one is smart,” she wrote. “She’s very determined.”
As usual, Dr. Aronson was right. Now that we know Sophie, there is no doubt she was controlling the situation, striving to unnerve her caregivers and make her dull world more interesting. Strangers routinely stop us on the street, in restaurants, and at playgrounds, mesmerized that someone so young has such presence, acumen, confidence, and beauty. Yes, the homely orphan in the referral photo turned out to be a breathtaking beauty. Icing on an already prize-winning cake. Despite having walked out of the same violent storm that pelted our son’s brain with horrifying debris and relentless purpose, Sophie emerged from the baby home in Birobidzhan with abrasions, certainly, but no deep gashes. This is the real miracle imbedded in our daughter’s remarkable, palpable spirit.
In the end, the decision to adopt Sophie has too many layers of significance, even salvation, to express adequately in words. If Pat and I ache over the enormity of Peter’s problems, if we stare at the ceiling at night because the responsibility of caring for a child like Peter robs us of sleep, then Sophie is our sweet elixir. She likes to say “Mommy, I love you so much my heart grows big.” I feel the same way. She is joy and cause for celebration, her impish face a constant reminder that there is good in the world and room for applause in my heart.
At the time, we thought Sophie would make the perfect companion for Ben, who was thirteen months her junior. Little did we know how our ordinary dreams were about to spiral exponentially beyond our imaginings.
January 27, 2010
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
August 20, 2007. Today is a triumph, a blue sky day in brilliant contrast to the banging, gray days that Pat and I have learned to accommodate. I lose myself in a daydream where my son enjoys a regular existence; where everyday I feel like the mother I long to be rather than the commandant I have become, raising children with patience, reason and humor, raising Sophie and Peter the way I was raised. Yesterday Peter gouged his nose for the second time in three days and made himself vomit at breakfast. Hardly a blue sky day. But something changed in the night. His brain is working today in a way that makes sense. Peter is trying and wants to have a good day. He announces this when he jumps into our bed for a rare snuggle before breakfast. Later he tells me in his deadpan voice that he’s not going to “make bleeding” and then later still, that he’s not going to say “butt or stupid or kill”. Peter thinks 100% out loud and so I am privy to hearing what should be his internal dialogue. He is proud of himself, and I am proud of him too. He wants to be like this every day, I know that now, but his better brain days come in unpredictable waves, in biochemical spurts that can’t be summoned at will. I take my cue from Peter and treat the day as the gift that it is. My son tells me he loves me and I can feel myself beam. I waited more than a year to hear this and it’s never a phrase that rolls easily from his lips. Outside the day is cool and rainy but inside, for now, the sky is blue.
Chapter 6: Oh Yeah (The Domestic Debacle)
In the midst of our frenetic effort to complete the additional requirements necessary to receive our travel date, the sacred day on the calendar when we would fly to Russia and hold Ben for the first time, we received a phone call that stopped us dead in our tracks. I had been so consumed with the new round of paperwork that I had forgotten about the little seed we’d planted a few months earlier. I didn’t even recognize the name of the caller when I answered the phone.
Around the same time we signed up for the international adoption meeting in Manhattan, we spread the odds of winning the adoption game by also getting ourselves on a domestic list. We put together an adoption package complete with photos, personal histories, and a dear birth mother letter. We filled out numerous questionnaires in which we indicated our desire to adopt a Caucasian baby through closed adoption. The birth mother needed to be free of alcohol, tobacco and drugs from conception through delivery. Because most birth mothers who contemplate adoption prefer an open arrangement, which allows some contact and periodic updates, we knew our chances of being picked were slim. The fact that we also would accept nothing less than a substance-free pregnancy closed the door even further. Be prepared, we were told, to wait two to three years, possibly much longer.
That was fine with us. We were planning to adopt from Russia. We’d be ready if and when a domestic opportunity arose to help complete our family. If not, then Pat and I would either be content with our one child or we would return to Russia to adopt a second baby. Our plan read so logically on paper. But then the phone rang. A birth mother had picked us. She was due in three weeks and preferred a closed (meaning no future contact) adoption. The baby, a boy, was already over six pounds and due July Fourth. She requested that we be with her in Tampa, Florida, for the delivery.
In the few beats it took before my brain aligned with this unexpected news, the qualifiers began popping from the phone like backyard fireworks. The birth mother had grappled with substance abuse in the past: cocaine, marijuana and alcohol, but swears she’s been clean for nearly a year. She is 38 years old and on her fifth pregnancy. Yes, all her other babies were given up for adoption. The agency placed them all and each continues to thrive. The birth mother knows who the father is but won’t say. The agency is in the process of investigating this issue so they can obtain the necessary paternal releases. Not to worry, these things have a way of working themselves out. To sweeten the pot, the woman on the phone whispers conspiratorially that the birth mother is beautiful and so are the four other children. And best of all: even though we were in the midst of planning our first trip to Birobidzhan to meet Ben, a trip which Adopt Through Us was predicting would take place in mid to late July, and no matter there were hundreds of unanswered questions regarding this birth mother, we needed to make a decision within 24 hours.
My poor husband nearly collapsed when I told him. I really had wanted to experience mothering a newborn, a wish he didn’t passionately share but was willing to support and respect. He had already fathered three newborn babies, after all, and I loved him for the selflessness of wanting me to have this opportunity even though he must have dreaded the sleepless drudgery it entailed. In his mid-fifties, the prospect of going to Russia for Ben was daunting enough. But we both wanted our new son to have a sibling. For me there was never any doubt, but Pat had not felt similarly until a NYC cab ride with his mother helped reorient his thinking. During a drowsy late night talk, he shared with me how he had been listening to her melancholy reminiscences about growing up as an only child and realized he didn’t want this for his son. And as it turned out, a sibling for Ben was landing in our lap, scheduled to drop in on the world, and possibly our lives, in a few short weeks. Never mind I was still in a walking cast and facing another surgery in late summer to remove an assortment of hardware in my lower leg from the ski accident three months earlier. We would find a way.
The news had an intoxicating effect, despite the poor timing and my hobbled condition. Pat walked around with his eyes bulging in disbelief and I found myself giggling like a schoolgirl. However, we knew this was no time to behave like love crazed teenagers or better yet, a couple of geriatrics who just won the lottery and decided to buy a hacienda in Costa Rica, sight unseen. To slow ourselves down and force a more rational consideration of the risks (such as history of drug use) and impossible logistics of the situation, we hastily scribbled a list of questions and criteria that we then ranked in order of priority. Making sure we did nothing to jeopardize the timely adoption of Ben was at the top of our list. In our hearts and minds and every other cell of our bodies he was already our son. The thought of Ben wasting away in some Dickensian institution a minute more than necessary was simply unacceptable. Obtaining empirical proof that the birth mother wasn’t using drugs or drinking was next. Finding the father was third. Figuring out how we could fly to Tampa for the birth, accept temporary custody during the mandatory waiting period under Florida law (knowing this time period would likely overlap with our expected Russian travel date), leave the baby in the care of one of my siblings (probably my sister Patty who would have to come to Tampa from Atlanta and stay there with the baby in the home of one of my brothers, both of whom live in the area, because the baby would not be allowed to leave the State of Florida), fly to Russia, meet and confirm that we wanted to adopt Ben, fly back from Russia and return to Tampa, appear in Florida court to finalize the domestic adoption, fly back to New York with the baby, and then prepare to undertake the entire sequence of events approximately six weeks later when we’d need to travel back to Russia to bring Ben home? Well, that was number four. Obviously we decided against prioritizing in order of complexity.
As it turned out, number four on our list was solvable, especially when we pushed back and persuaded the agency that 24 hours was an unreasonable amount of time to determine whether this could work. We talked to adoption lawyers about temporary custody, the transfer of temporary custody to my sister, getting leave from the court to travel from Tampa to Russia, and a host of other legal gyrations that would be required to accomplish this feat. My sister Patty would have to take time from her law practice and make arrangements for the care of her own two children (her husband constantly travels), but she would find a way to make this work. My brother Mark and his wife Paula would set up a temporary nursery in their home in Tampa. Unfortunately, they had scheduled a two-week trip with their kids to the Grand Canyon more than a year earlier that could not be cancelled or rescheduled. This meant Patty would be on her own with the baby in Mark’s house once we left for Russia to meet Ben.
The more difficult part was related to the issues the domestic agency assured us would work themselves out. The birth mother had not come to the agency until very late in her pregnancy and for this reason, the quality of her prenatal care as well as confirmation of her drug and alcohol status could not be determined. Despite this, the agency continued to assure us that the birth mother was cooperative and willing to undergo any and all drug and alcohol screens. An emergency appointment for her to see the agency’s obstetrician had been made. But the appointment was missed, and so was the next one. We were told she had a fear of taking public transportation, which is why she didn’t make the first appointment. The next time the agency sent a taxicab but the driver left after fifteen minutes when she failed to come out of the apartment the agency had placed her in and for which we were expected to pay. A few days passed. Someone from the adoption agency went over to the apartment and after explaining to the woman that she would not enjoy any of the expected fees or paid expenses if she failed to cooperate with the medical protocol, she agreed to be escorted to the doctor.
My brother Mark is the kind of loud, lumbering guy who in his college and fraternity days used to get thrown out of college football games for drunk and disorderly conduct but who has always had one of the biggest and best hearts on the planet. He’s an attorney now who represents product manufacturers against claims for liability. A seasoned litigator with an innate talent for identifying fraud, he was becoming more and more suspicious of the birth mother’s behavior and growing list of ill-disguised excuses. While the agency was doing its best to corral a difficult client, Mark hatched a more practical, if not extreme, plan. He offered to send out his private investigator to find out who the birth mother was, the extent of her past (and present) drug use, the name and background of the father, and anything else we wanted to know. “Don’t worry,” he said. “I promise you, my guy can find out anything.” Although I didn’t have much experience with this side of Mark, and was a little alarmed to learn he could gather information in this fashion, I was deeply touched by the offer.
In the meantime, the agency wasn’t making much progress with the birth mother. She went to the doctor but refused to submit to a drug screen. The obstetrician did perform a sonogram, however, and was able to confirm the baby was male and probably not due until early August. Anyone but the most desperate to believe in the fiction of this situation would understand what was happening. This woman was on drugs, and probably drinking and smoking as well. She was a professional birth mother who used the 9 months of housing, groceries, medical care, and cash – all part of the private adoption package – to cleanup, rest, and finance the times between pregnancies.
Unlike the wrenching emotions we felt when we turned down the two Russian babies before Ben, Pat and I knew in a matter of days that this was a con and we were the intended victims. I remember the relief I felt on the morning Pat and I decided over coffee and bagels that neither of us wanted to pursue this “opportunity” a minute longer. The initial excitement had passed and we had finally sobered up. That’s not to say, however, that I didn’t feel any regret or disappointment. I knew there would be no other chance to cradle a newborn, an infant that would be mine to hold and keep from the moment of birth. But thoughts of Ben, the baby in Birobidzhan we had claimed by name and in our hearts only weeks before, softened this blow and helped obscure thoughts of this latest bungled experience. He was all we really needed.
The phone rang before we ever had a chance to announce the decision to walk away. I listened to the adoption agency woman explain that the birth mother had gone into labor overnight as I watched a woodpecker accost the wooden swing that hangs under the large oak in our front yard. The baby had been born five hours later, and about five weeks premature, with cocaine and marijuana in his bloodstream. Consistent with Florida law, the state assumed custody and was taking steps to charge the mother with felony child abuse. Seconds after I hung up the phone, the woodpecker flew away, frustrated with the effort of pecking at an uncooperative, swaying object. I looked over at Pat, who was smiling wryly. He knew what I knew. Topping off our mugs with hot coffee, we went about our business of planning for the day ahead. A day that was warm, sunny and waiting to be absorbed. The domestic debacle was over.
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
August 18, 2007. Peter and I are going into the city today, just the two of us. We’re taking the train into Manhattan and then spending the afternoon at the American Museum of Natural History. Afterwards, we’ll spend the night at a hotel. Pat and Sophie are headed to the Crayola Factory for an adventure of their own. Peter requested a trip alone with me a while back and I’ve been eager to oblige. I hear him wake early but he doesn’t come into our room, which I know from past experience means he took off his pull-up and peed on the bed. Sure enough, I smell urine as I turn the corner. What I don’t anticipate is the blood. I find him shaking like a leaf, naked from the waist down, holding his soiled pajama bottoms and pull-up. Blood is smeared on his face and hands and all over his bed and walls. He has gouged his right nostril to make himself bleed, a shocking new trick he’s been perfecting over the last several months. Did he do it because he purposely wet the bed and was nervous I’d cancel the trip? Or did he wet and gouge just so I would cancel the trip? As crazy as it sounds, maybe he is happy about the trip and this was his way of showing enthusiasm. Or more likely still, maybe the trip represents a chance for real intimacy, one on one, and this is more than his damaged soul can handle. One thing is certain, though: Peter is a skilled saboteur. I go about the business of cleaning up what looks like a crime scene and struggle not to look thrown. Our realtor is hosting an Open House tomorrow while we’re away and a generous amount of blood mingled with the smell of stale urine is bound to affect the ambiance. Peter and I need this time together, and we need it to go well. This is what I tell myself to stay calm. I leave the house ninety minutes later, yelling over my shoulder for Pat to make sure his cell phone is charged and turned on at all times. I kiss Sophie goodbye and wish I was taking her and leaving Peter with Pat. Maybe Peter knows this. Maybe my imperfect, frail love for him is the real reason he gouges his nose.
Chapter 5: Ben
We felt fully indoctrinated into the business of adoption by the time the third referral arrived. We had grown comfortable discussing peculiar Russian medical terms such as perinatal encephalopathy, spastic tetraparesis, pyramidal insufficiency, and dyskenesia. These and others are conditions, or more accurately, predictions, commonly noted on Russian orphanage medical reports that have no counterpart in Western medicine. Mostly they denote the poor circumstances of the birth mother, her lack of prenatal care, history of illness or even the fact she gave birth at home. These labels are meant to signal the child was born from persons of unfortunate position; they are in many ways a judgment, a system of branding the unwanted.
Russian medicine enjoys a long history of assigning disease to otherwise healthy individuals. Combine this predilection with the vast number of children available for adoption and it’s no wonder the official position of the Russian government, and the doctors it employs, is that these children are defective. To admit otherwise is to acknowledge a national crisis of family, opportunity, poverty, and hope. This is why Russian orphans by definition are presumed to have defects, and why the compulsion of orphanage doctors to find pathology where none exists seems itself so blatantly pathological.
As perplexing as it is infuriating, the Russian system of assigning dubious medical diagnoses to orphaned infants nonetheless fails to identify the numerous bona fide issues circling ominously overhead. These real issues, like habitual alcohol consumption during pregnancy, are overlooked and unacknowledged, yet they are the true harbingers that alter the destinies of these children. Already having made two informed but difficult choices rejecting orphaned babies in need, Pat and I understood these truths. We were seasoned veterans of the game, appropriately cynical and suspicious by the time the third email arrived. We were no longer capable of being surprised or cajoled.
But there he was, Baby Number Three. Our hearts tugged toward him the moment we opened the picture and saw his tiny, nearly translucent, nine-month old face. He was our Ben. To this day, I can recall his delicate features as vividly as I’m able to remember the contours of my mother’s hands, or the joy shining through my sister’s exhausted, bloodshot eyes both times she gave birth. He had ruby red lips, cobalt blue eyes that did little to hide a certain vulnerable quality, and a budding musician’s graceful fingers. Like a newly hatched chick, his head was covered with downy, yellow fuzz. His name was Aleksandr, a common name among Russian orphans, but he was known as “Sasha”. The other bits of information, growth measurements and gestational length, were all promising. Other than the expected notation regarding perinatal encephalopathy, there were no red flags. The Russians were making sure we knew our Ben was born of suboptimal circumstances, but we already knew that. Not too many patrician children found their way into Russian institutions for orphans.
Penny was called for the third time, and the video, which she assured had been carefully screened by her and others at Adopt Through Us, was sent via overnight delivery. The tape was beautiful to watch. He was a wonderful baby, tender and loving. He laughed and cooed and gently reached for his caregiver’s fingers to grasp. His clothes were not taken off, which would have afforded Dr. Aronson an opportunity to examine his extremities, muscle tone and nutritional status, but there were plenty of other encouraging signs. Pulled to a standing position by the caregiver, for instance, he was able to hold himself up using the crib rail for support. Not bad for a ten-month old baby presumed to be neglected and nutritionally compromised. He also had wonderful eye contact and readily responded to his name being called.
We waited until we heard back from Dr. Aronson to let our families know, which was difficult because we felt so certain this child was Ben. I can’t remember exactly what we did to fill the time, but I do remember how I felt. Edgy. Queasy. Helpless. Angry. I was becoming increasingly resentful of the fact that my destiny was tangled up with medical reports and video reviews and all the other clinical aspects of adoption, not to mention the intrusive, antiseptic year of fertility treatment that preceded it. We had already turned down two babies. The thought that a third child could follow suit and elude us was difficult to stomach. Though I wouldn’t have admitted it, insisting instead to anyone who cared to listen that my life was rich and complete without children, my need to mother was as basic as my need to laugh or feel the warming sun on my face, as elemental and unwavering as my love for Pat.
The business of acquiring children to love through adoption, however, was beginning to damage my soul in a way previously unconsidered. None of us are in control of our own destinies, not really. The trick is in maintaining the charade, but for me the illusion was starting to fray at the seams. I needed good news. I needed this baby to be ours.
My heart thumped wildly when word finally came, eyes scanning the few lines dashed out in Dr. Aronson’s late night email, lines that would change our lives forever. The baby was fine. All signs were positive, not a single finding worthy of concern. We didn’t cry, maybe we were still too stunned, but we were overjoyed. Pat celebrated in his usual quiet way, the death of his sons having taught him long ago that good can turn bad all too quickly. The pictures in our bedroom remind me daily of his deeply private loss. First Vincent, whose infantile features blur over time with imperfect memory and then Joey, the goofy, big-hearted prankster whose light shined so bright but much too briefly. It’s a bitter lesson incapable of being unlearned. I had never been directly touched, however, by such unspeakable tragedy, and so despite my respect for Pat’s reticence, I felt like shouting our news from the highest rooftop. I was ready and eager to plunge head first into motherhood, completely confident in the adoption process that already had culled without mercy two helpless, deserving children. Though arduous, the process had worked. Ben was born! I wanted the world to know.
The first thing I did was stand in front of the TV in our bedroom and record clips of the videotape with my digital camera, producing a fuzzy but animated vision of Ben that I emailed to my family and closest friends. Then I began my lists. What we would need to furnish the nursery, what Ben would need in the way of clothes, shoes, blankets, toys, books, bottles, sippy cups, and diapers. He would also need a car seat, high chair, stroller, port-a-crib, and play gym. Then there was the list of what he didn’t really need but I wanted him to have: University of Florida football outfits, Dr. Seuss plates and cups, personalized towels with embroidered dinosaurs, silly hats, stuffed dogs, horses and monkeys, a puppy snuggle suit, Raffi CDs, organic baby food, and a genuine wooden toboggan.
These were the things that would mark him as mine, brand him as my own in a way that genetics, in this instance, could not. I’m certain Pat had his own list. Ben would first learn to love the things we loved, the favorites on our lists serving as loving placeholders until he was old enough to choose his own prized possessions.
An impressive pile of “to do” lists began overtaking our rumpled bed when the phone started ringing. We took turns listening as the high-pitched squeals of congratulation poured in, one call following another for hours on end, our eyes finally wet with tears that no amount of dabbing could stop. Our child was real. He was in the world, in a city called Birobidzhan, a place in the far east of Russia that takes effort to locate on a map, waiting for a ride home. With the click of a button, we could see his beautiful face and slender long limbs, hear his infectious laugh, and best of all, dream of the day when the three of us were together. As soon as the calls slowed, I abandoned my lists in favor of printing and framing his referral photos, carefully displaying them around the house so Pat and I could see our baby’s face from any vantage. I fell asleep that night staring at his little face, feeling content and relaxed for the first time in months. I was becoming a mother. I could finally feel it. The most difficult part of the journey was over. All that was left was to bring him home.
January 26, 2010
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
August 14, 2007. Peter has a summer school show tomorrow that I’m missing because I have a phone interview. I resigned my job as an environmental law professor at Bard College eight days ago; without warning, the dean asked me and others on the faculty to take a 25% pay cut even though last year I was the highest rated professor in the program. He threatened to cancel my insurance benefits if I didn’t sign the appointment letter, which is illegal. I didn’t sign and our benefits are still in place, for a few more weeks. Bard has always been uncomfortable with lawyers and other professional types mixing with the ultra liberal cadre of artists and bohemians. I suppose the disdain finally caught up with me. Today’s low point, however, is losing my temper at bath time. It’s so hard to tell what Peter can’t versus won’t do. Tonight, for instance, he’s having trouble locating his hair for washing. We have been working on this skill for two years. No matter how I coach him, he can’t do it. After I finally finish the job myself, visibly frustrated, he snickers. At times, Peter enjoys making Pat and me angry. Maybe it’s merely a way for him to vent his own frustration, but the snickering is difficult to take all the same. The boy in the tub tonight can be hard to like and filled with disdain. Moments like this are tough for people outside the four corners of our family to understand. They are dark, lonely moments filled with doubt and self-condemnation. I’m so thankful Pat understands when I tell him what happened. He is my anchor at times like these, and our resolve to confront our obstacles together, with love forged from friendship and shared experience, is a precious lifeline, an immeasurable gift. I don’t know what I’d do without his knowing touch and understanding eyes, the crooked smile that gives me hope and consolation.
Chapter 4: The Referral
The first referral Adopt Through Us sent was for a 10-month old boy whose name I no longer remember. The hoops people have to jump through just to be eligible to receive a referral are enough to overwhelm all but the most committed. Although we motored through the process with adrenalin-laced speed and an undeniable measure of excitement, precious months had passed and we were antsy. We happily had been fingerprinted, photographed, background checked, psychologically analyzed, medically probed, vaccinated against exotic disease, subjected to oversight in our home, and made to swear on the collective writings of humanity that we would be superlative parents. Even our cranky old dog had been scrutinized, and she failed to exhibit the good humor that we ascribed to ourselves during this time period. We were past ready when the email with the baby’s basic information and a one page medical report finally came. The report said he was born five weeks premature but that he had made significant progress and was a “good boy”, a nebulous phrase popular among Russian orphanages.
We had filled out countless forms, meant to provide the agency with a complete profile of our preferences, wishes and fears, and on one of them we checked the box indicating we only wanted referrals of full term babies. But there he was, his picture brought to us in full color through the miracle of digital photography. Adopt Through Us undoubtedly understood the power of the picture, maybe even betting that our desperate desire to have a baby would overwhelm the more sensible side of us that had checked the “no premature babies” box. And if they were playing the odds, they gambled correctly. Lying on our bellies with the laptop on the bed, propped on elbows and ankles intertwined, we opened the attachment and held our breath. Like us, the baby was on his belly, smiling ruefully as he struggled to hold up his head. He looked more like five months than ten. I remember he had straggly wisps of brown hair and a tiny hooked nose. Best of all, he had a philtrum. He wasn’t cute by Gerber standards but we were ready to fall in love.
We immediately forwarded the email to Jane Aronson, with copies going to my brothers and sister. The youngest of five, my siblings and I have always been close. In the years following my parents’ deaths, I find myself relying on them more and more and I was anxious to share our long awaited news. Pat, on the other hand, was more subdued. The concept of international adoption was foreign, even scary, to his Sicilian family. This genetically ingrained mistrust of the unfamiliar coupled with my husband’s history with his own two boys rendered the LoBrutto clan lukewarm, at best, on the subject. In ways clever and common, and all ways in between, his mother, brother, and daughter made it clear they had no intention of championing the cause. They would come around, full circle, in fact, but not for a while.
The video arrived on our doorstep the following morning, overnight mail. Dr. Aronson would receive her duplicate copy a few hours later. We must have watched the videotape thirty-five times. The tiny person we saw in the photo came alive before us, head bobbing for the camera atop a wrinkly, chicken-thin neck. We watched as the Russian attendant undressed the baby, a strange but undoubtedly necessary part of the presentation. He was barrel-chested and skinny, not a single roll of baby fat to pinch. But we weren’t concerned; a calorie-rich and balanced diet would produce a pinchable roll within a few months. We were transfixed.
The female attendant next propped him up to show our future baby could sit, which in his case was more like a slump. Then she pulled him up on his legs and bounced him up and down so many times that the sight of his head jostling over and over left me wishing there was some sort of international child protective squad that could be summoned to his rescue. His legs buckled quickly under the G-force of the bounce and finally he was allowed to sag back into an exhausted yet more sustainable position. And then it was over. Not a single sound was heard in the entire two-minute videotape. We stared at each other for a moment, both reaching to hit the rewind button at the same time. We watched, stared, talked, rewound the tape and then watched again, with breaks here and there for meals and other distractions, until we received Dr. Aronson’s email at 2:30 in the morning.
The baby was a risk, she wrote. His measurements, if accurate, were encouraging in terms of catch-up growth, but there were other concerns. His fists were clenched and one of his legs buckled when he was pulled to a stand. Palms should be open at ten months and weight should be borne evenly by the legs. Also, the wobbly head was a problem, as was the lack of vocalizations. These and other signs indicated neurological compromise, a central nervous system out of sync, perhaps irreparably. So, Dr. Aronson concluded, even though the baby had a philtrum, the concerns noted upon review of the videotape suggested a moderate degree of risk.
The decision was in our hands. The next day we called Adopt Through Us and told Penny, our caseworker, that we were turning the baby down due to Dr. Aronson’s feedback. We reminded her that we had asked not to be considered for premature babies and to please keep this in mind next time. We hung up and then hurried to rid our home and hearts of the evidence. The emails were erased and the videotape was put in the trash bin. Relatives and close friends were called and asked to do the same.
We were disappointed and sad but we also had resolve. We didn’t cause the baby’s problems and nothing in our karmas said we were required to fix them.
But then, I barely slept that night. The rational confidence I summoned during the day gave way to a night dominated by a restless insomniac’s study in self-doubt and second-guessing. I had wakeful dreams about the clothes I would pick out for him, what the nursery would look like and what color his hair would come in once his health was restored. We had decided to name our baby Benjamin, a name we both liked and one that held special significance for me because it was the name of a favorite relative who died when I was in law school. I grieved that night over the realization that this child would not be our Ben. I laid awake, questioning the correctness, the prudence, and the coldness of our decision. Was I perfect at ten months? Was Pat? Would we have passed Dr. Aronson’s scrutiny? Maybe the reason his hands were clenched was because his belly hurt that day and maybe all that brutish bouncing wore him out to the point that he needed to favor one leg. I lean to one side when I’m tired and I don’t have any obvious neurological defect. Did I exhibit any of these signs as a baby? It’s impossible to know since both my parents have died and can’t be asked. Maybe, I told myself, we were wrong.
Daylight brought relief from this self-torture and Pat and I thankfully managed to resume our normal lives for the intervening weeks before the next email arrived. I had broken my ankle in several places while skiing a few months earlier. Although an impressive assortment of titanium hardware was needed to coax the pieces of bone into knitting, the coaxing worked. I had graduated by May to walking on a lunar-style boot without crutches, giving me hope that I would be mobile by the time we went to Russia. We knew that couples just like us, scattered mostly around the United States and Canada, were waiting for their first, second or even third referral, and it was useful to keep this fact in mind. There is nothing unusual, in the unusual game of international adoption, about turning down referred children for any number of reasons. I knew our disappointment was not unique but it did feel uncommon enough to allow the “why me?” mentality to permeate my thoughts. The fact that I was hobbling around on a bum leg didn’t help.
But as usual, Pat stepped in, with his tender-hearted ability to intercede when he feels me slipping. Sometimes we talk about it, sometimes we don’t. But always he jokes and cajoles and gently steers me toward a more hopeful vision. I remember him taking me on lots of car rides during the time my ankle was healing. Pat and I both love to survey the scenery in our beautiful Hudson Valley – the farms, the red barns, the rolling hills, the Catskills on the horizon, the occasional covered bridge. The noiseless beauty, the horses’ manes rustling with the breeze in the pastures, the copper tones of late afternoon: it’s easy to get lost in the natural splendor and forget what in the long run, are minor disappointments. Even with the kids, we still manage the occasional scenic drive, with Pat “getting lost” on purpose. They invariably fall asleep from sheer boredom and for 20 minutes or so, we glide around and about the endless country roads, feeling snug and content, quiet and peaceful in our solidarity.
We didn’t put too many miles on the odometer in the days following that first referral however, because we received our next email shortly afterwards. We were back on the road to parenthood. The boy was full-term and weighed nearly 10 pounds at birth. He had an astonishingly healthy head circumference, enjoyed the height of a giant, and was eight months old. The photo showed he had a full head of dark hair, lush lips, and plump cheeks. His name was Igor. He stared back at us from the computer screen with intense, lively eyes. Igor was Gerber cute. Without hesitation, we called Adopt Through Us and asked Penny to send the videotape to Dr. Aronson and us. She confessed she’d been so eager to rectify the last referral that she sent us Igor’s medical report and photo before she had even received, or reviewed, the video. Copies would be sent, Penny promised, as soon as the tape reached her office.
The news went over the hi-speed wires of our family network with usual lightning speed. Jokes flew across computers about how Igor (our Ben) would tower over Pat and me by the time he was seven. We would need to buy an extra refrigerator to store his preschool snacks. Did we know a place where we could order custom-made baby clothes? Unlike the first baby, Igor looked so healthy and his measurements were so enormous that only the most pessimistic could find cause for worry.
But two days passed, then three, and still not a single word. By day four we were annoyed, though still too naïve to be concerned. I called Adopt Through Us and was told Penny would need to call us back. Several hours later she did, and the news was not good. The video arrived, but the agency would not be sending it. Half of Igor’s face was frozen. Paralyzed. For medical reasons that have long escaped me, the defect wasn’t noticeable in the photo. Penny, of course, was sorry. So very sorry.
After a few moments of mumbled, stunned condolences, Pat and I took to our separate corners to cope. He disappeared into the consoling, silent world of his work. I watched as he plunked heavily down the stairs, head hanging in disbelief. I have always envied this ability of his, the ability to lose himself in books, to let the world drop away in favor of the stories he helps shape, the fictional lives and invented happenings of the written word.
What I needed was to slip into the tub and cry. More nights than not I allow myself the indulgence of an evening bath. Most often I read while I soak, novels mostly, but some nights I close my eyes, dim the lights and try to will my mind and body into letting go of tension and useless worry. Enveloped in my private sanctuary, I should have shed healing tears for the babies I saw in my dreams but would never hold, for the littlest hearts, including Igor’s, that my love would never touch.
But I didn’t take that bath. I was incapable of letting Igor and his 10 pounds of hope slip from our fingers without a fight and so instead I spent an hour or two researching possible benign causes of facial paralysis. Eventually I landed on an appealing explanation. Delivery by forceps, I read, can temporarily damage facial nerves and cause reversible palsy. Eureka! I emailed Dr. Aronson immediately. I barely heard the swoosh of the message being sent when her reply came back. Without being able to physically examine the baby, she explained, and without access to proper testing, there was no way to eliminate the more sinister (and likely) causes of the paralysis. Her message was sympathetic but firm: the facial palsy put him in the highest risk category. There was no need for her to see the video. Like the baby preceding him, this boy would not be our Ben.
Igor probably will spend the rest of his childhood in an institution, and depending on intellectual functioning, perhaps his adulthood too. The Russian orphanage, our agency later explained, should never have referred him in the first place. His condition rendered him “unadoptable”. The best thing to do, we were counseled, was to cast him from our minds and move forward. Good advice, but as I learned in law school, you can’t unring a bell. Igor was in the world; there was no denying this fact. Pat told me recently that he rarely thinks about him; I wish the same were true for me. On occasion I still am struck by the unwelcome vision of his frozen face. In the nanosecond it takes for my brain to shake free of the offending, ghostly image, I wonder whether Igor’s palsy has resolved. I wonder whether the orphanage has been able to provide his basic needs. But mostly I wonder whether he has anyone to love him, that beautiful baby boy who looked so perfect on picture day.
January 25, 2010
Tags: adoption, attachment, autism, Dr. Jane Aronson, fetal alcohol, international adoption, Kazakhstan, post-institutional autism, post-institutionalized
August 10, 2007. We’re eating at a diner this morning because a realtor has brought clients from Woodstock to look at our house and we can’t be there. We’ve been told that buyers won’t visualize a home as theirs if they see other people living in it. Sophie and Peter are coloring at the table as we wait for breakfast. The sight of Sophie’s big-headed person, with purple eyelashes and Tammy Faye Baker lipstick, brings crooked smiles to the row of construction workers sitting at the counter. Peter is drawing a racetrack and racecars. We know this because he tells us. What he’s doing is running the crayon around and around the paper, as though the crayon itself is the racecar. At six, he doesn’t understand that a drawing is representational and a form of communication. His thinking is too concrete to maneuver such concepts. He expects people to understand what he thinks and always seems surprised when they don’t. Breakfast arrives and the children put the crayons away and pull their now-decorated placemats up for safekeeping before the waitress sets the plates down. Peter tells us that his pancakes taste like chicken. Pat and I trade furtive glances. Sophie’s fork hangs in the air in a pregnant pause. Peter has sent the family a signal: from this moment forward, today will be a bad day. I struggle not to let this pronouncement color my mood but the optimism for the day wanes all the same. I eat my meal even though I’m no longer hungry. We have long understood that Peter’s demeanor at breakfast is a fail-safe barometer of temperament and ability for the day ahead. When he was younger he used to hum “da tee tee da da, da tee tee da da” to alert us that an inharmonious storm was gathering in his brain. Sometimes when Pat’s feeling particularly evil, he’ll whisper that ditty in my ear, knowing it makes me crazy. This usually brings on a tickling fest and a much-needed release of tension. Thank God we can laugh.
Chapter 3: The Adoption Agency
Pat and I would be put through an iron triathlon of adoption-related obstacles before a strange marriage of fate and circumstance led us first to Sophie, then Peter. One of the first and most seminal decisions we made, the decision that put us on the eventual path toward our children, was picking an international adoption agency.
After months of interviewing, attending information meetings, reading every possible written word on the subject and otherwise losing our minds over the decision, we chose to adopt through Adopt Through Us, which is located in south Florida. Before choosing our agency however, we had to first decide what color, age and sex we wanted our child or children to be, and therefore from what country. Did we want to “pick” our own children in-country or did we want information referred to us ahead of time? Did we want to travel to the child’s country or did we want the child escorted to us? Did we want an infant or would we consider a toddler, or better yet, an older child? The combinations seemed endless, like the logic questions I studied and answered twenty years ago to gain entrance to law school (if 34 people are seated at a round table, and blonde women cannot sit next to men under age 30, and if tall men over age 30 cannot sit next to short men of any age unless they are also bald, then . . .).
Some decisions were easier to make though difficult to admit. More than Pat, for instance, I wanted Caucasian children. I’m a little ashamed of this fact but the truth is I wanted to be able to walk down the street without advertising that we are a family formed by adoption. I wanted a seamless blend and on some level I suppose I resented the idea of having to wear our adopted status like a curious tattoo. I’m not sure why it mattered so much. I’m open with people and my children about the way in which our family was created and I want Peter and Sophie to be proud of their Russian heritage. Although our adopted status has never been a secret, I suppose I liked the idea of letting it be one, of being able to blend into the anonymity of typicality in case the urge grabbed hold.
Also, I reasoned, we still had not surrendered the idea of having a biological child. Pat and I had tried for the usual amount of time with no success, but at 38, the occasional short-lived pregnancy allowed for lingering hope. And if we were successful at reproducing, I told myself I didn’t want our adopted child to feel out of place because he or she “looked” different. This was ridiculous, of course; my desire to have kids of the same race was not rooted in some kind of misplaced altruism toward our future adopted children. Our new neighbors, who are Caucasian, have a biological son Peter’s age and a younger daughter adopted from China. She is the most precious, happy, well-adjusted child I know. She is a half Irish Catholic, half Jewish, Chinese American. When her ethnicity and multicultural upbringing one day becomes a topic for self-exploration, I trust her parents will help guide her through it with grace and wisdom. No, I wanted white children for myself. I wanted to be able to raise the issue at a dinner party but not be badgered by questions at the mall. I wanted to be able to take my children to the zoo without having to bear that approving nod from strangers that says, “we know you have adopted those kids and we think it’s wonderful!” I wanted to feel like a “real” mother and was scared beyond distraction that I’d feel instead like a fake. Crossing racial lines simply required more strength and character than I could muster.
Now I know how foolish I was, how much my own insecurities about what family means have caused so much of the heartache, exhaustion and desperation that Pat and I experience on a daily basis. Peter and Sophie are Caucasians, true enough. We “pass” in the mall, at the zoo, and anywhere else. The world would never guess our children were adopted and we – Peter and Sophie included – have control over when, how and whether people should know. People even say Peter looks like Pat and Sophie resembles me. In fact, when Peter makes himself vomit in a restaurant or flails around the grocery store like a newly launched pinball, all eyes are on me, as if to implore, “you’re his mother, make him stop.” But I can’t. It seems I naively have traded the appearance of normalcy for actual normalcy. Peter is permanently brain damaged from the effects of prenatal alcohol exposure, his mind further compromised by neglect, abuse and the stark rigors of Russian institutionalization. When he’s like that I can’t make him stop. I’m not sure anyone can.
But I didn’t know any of this at the time and felt only slight queasiness when I thought about the risks of adopting from Russia. We were taking all the right precautions and proceeding in an orderly, even lawyerly, fashion. We had a plan and felt empowered enough with knowledge gained from our adoptive parenting class to march ahead. The first “to do” items on our list were to pick a country and then an agency. We had already decided on Caucasian children, or at least I had decided and Pat was too gentle and kind to make me examine my motives, and this decision left us few options at the time. We would either adopt from Russia or Kazakhstan. Kazakhstan was quickly eliminated however, because all of the agencies we investigated sent parents blindly, without information of any kind. When asked why, we were told they believed that adopting parents should pick out a child themselves, as if somehow these flocks of bewildered, untrained people so desperate to parent will know when they walk into an orphanage halfway across the globe which orphan is meant to be theirs.
Pat is a fiction editor, a hopeless romantic and dreamer, and I’m a tree-hugging lawyer and teacher, champion of lost causes and stranded pond guppies. We both knew better than to put ourselves in that situation. I still can remember the faces of the puppies in the litter I turned down 13 years ago in favor of the one I chose, a scrappy Jack Russell named Scout.
I can still see the faces of all the children in the Russian orphanage we met during our trips and if I close my eyes, I can feel their hands reaching up my legs, soundlessly imploring to be whisked away. I would have taken them all had it been my decision to make. Pat too. At least we knew ourselves in that regard. Kazakhstan was out of the running.
We were going to Russia and we decided that Adopt Through Us, doing business in my home state of Florida, would lead us there. They promised photographs, accurate medical records, videotapes and clean, compassionate, well-staffed orphanages. They only dealt with the best and their own staff had adopted children from the same orphanages from which we would be adopting. They knew and respected Jane Aronson, the adoption pediatrician we had met in the city and whose expertise and insight had become important to us.
Like countless scores before us, we enlisted the aid of Dr. Aronson and arranged for her professional opinion to help inform our decision-making when the time arrived. She was a large part of our plan and to me, a secret ace in the hole. She would help us keep a rational, steady course and I was confident she had the chutzpah to shake me silly if I started acting like a crazed, child-deprived lunatic. It’s not that I felt the lunacy brewing inside me so much as I had witnessed the effects first hand and knew I could benefit from a strong inoculation. My year of fertility treatment, or more accurately, my year of watching and listening to other women in the fertility clinic waiting room, taught me that otherwise sane people can be rendered senseless when confronted with the prospect of a childless life. Dr. Aronson was our insurance policy against emotion, want and biological need driving us toward foolhardy and tragic choices.
Once we had our country, our agency, and Dr. Aronson to guide us, all we had to do was comply with a daunting volume of procedural requirements and then wait for our referral, for the email that would bring us a picture of the child that had been chosen for us, along with a brief medical summary. If the preliminary information looked good, then the agency would overnight the videotape and other records for a more intensive review. For a remarkably modest fee, Dr. Aronson would then intercede, reviewing medical records, photographs and videos sent from the orphanage. If her emails to us are any indication, she does this work mostly in the middle of the night, in the few quiet hours, I gather, when her two young sons, partner, and busy medical practice stop vying for her attention.
Dr. Aronson assigns levels of developmental and health risk based on a number of considerations, such as available growth measurements, facial features, muscle tone, and review of medical records. She studies the child’s videotape, searching for neurological signs and other clues in the two-to-four-minute clips sent by the adoption agency that might indicate a problem. For instance, a baby’s movements should be symmetrical, he should have a pincer with which to pick up Cheerios by ten months, and his fists should not be clenched beyond a certain age. She checks to see whether the child responds to his name, whether weight is borne evenly by the legs and whether he appears to be nearing developmentally appropriate milestones. Like a prosecutor seeking truth from a hostile witness, she digs without apology for truths obscured by scant information and hidden behind the alluring facades of infants and toddlers in desperate need of rescue. She forces prospective parents to see the truth and counsels them when facts are murky and therefore potentially devastating. She is a fiercely devoted advocate for children yet she knows and accepts that not every child can be saved and not all prospective parents are suited for all challenges.
With Dr. Aronson in our back pocket, we prepared to wait, smug with knowledge that we were in control of our adoption destiny. Pat is significantly older than I and was married once before, a father of two boys and a girl. Of the three children born from that marriage, only his daughter Jennifer, now grown and married, survives. His two biological sons are dead. A car struck Joseph on his bicycle when he was twelve and Vincent died from a hole in his heart four months after birth. Pat was robbed of his right to see his sons grow up and I desperately wanted to give him one more chance. We requested a referral of a baby boy, the younger the better.
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
August 8, 2007. Peter wet his pants this morning and has a cold. He has learned to be snuggly when he doesn’t feel good. His cold will be mine in a few days but the intimacy is worth it. He keeps saying his new friend from summer school is coming over even though no plans have been made. The phone rings and he says it’s her. He calls her Maggie but I later learn her name is Maria. Peter only has had one play date initiated by another child, a boy with issues of his own. He stole the child’s coat from school the next day and the day after that he gave him a trinket stolen from the teacher’s desk by way of apology. Twice today I went into the bathroom, which left him unsupervised for thirty seconds, and he got into trouble both times. He kept calling Sophie “stupid” in his repetitive, echolalic manner, and later he went and took out toys that long ago had been confiscated as soon as the bathroom door closed. He knows what the rules are but can’t self-enforce. Though he has severe memory deficits, he can recall without fail where Pat stashed the forbidden toys. Before dinner, Peter tells me he knows how to spell. He says, “flower starts with L.” In a way he’s close and so I praise him for the effort and gently correct the mistake.
Chapter 2: What a Missing Philtrum Looks Like
Peter came to us in the form of three grainy digital photos emailed from our adoption agency, which in turn received them via email from the orphanage in Russia. Seeing the initial photos of your future child are the adoptive mother’s equivalent of looking at a sonogram for the first time. In those blurry images, with heart pumping faster than a pubescent salsa drummer, I saw an Olympic gymnast, a Nobel Prize winning scientist, a Poet Laureate, or even the next Baryshnikov. I saw my son.
Those were my giddy dreams, certainly. The kind of dreams that make your heart flutter with excitement and provide the adrenalin necessary to keep you painting the nursery (or in our case, bedroom) even though you’re so tired your arms wobble like spaghetti noodles. My real dreams for Peter, however, were what nourished hope and provided the sustenance necessary to survive the adoption waiting game. I wanted him to be happy, healthy, secure in our family, and grounded and well practiced in the values that would prepare him for adult responsibilities and a fulfilling life. He would be our Peter the Great, not because of his remarkable, public accomplishments, but because he would overcome his difficult beginnings and grow up happy and well-adjusted through the boundless love, patience, and example provided by us, his parents.
When I look back at those photos, it’s easy to remember why I first fell in love with the idea of Peter, and why I’ve worked so hard to fall and stay in love with the reality of him, our troubled little boy who came wrapped in a package so fuzzy and devoid of information we were able, and eager, to see perfection. What was clear was that Pat and I thought the boy in those photos was one of the most beautiful children we’d ever seen. And in fact, he is an astonishingly handsome child, with twinkling eyes and an infectious, impish grin. He’s blessed with big, almond-shaped brown eyes and eyelashes long enough to harvest and sell in designer salons. At the time I reveled in the perfect chubbiness of his cheeks, rosy and red the way nature intended. Peter smiled so happily in the pictures that I never gave the shape or quality of his philtrum (which his infectious smile camouflaged) much thought. In fact, his face didn’t resemble any of the faces of the countless alcohol-affected children I had seen on websites or in books.
Although Peter would turn out to have certain classic features of Fetal Alcohol Syndrome, like an indistinct, flat philtrum and thin upper lip, he lacks the small eyes, funny ears or dull expression that are equally as characteristic of the prototypical FAS face. At the time I didn’t realize there was little correlation between facial features and the severity of damage caused by prenatal alcohol consumption. Depending on what stage of pregnancy a birth mother ingests alcohol, her child may be severely impacted but show few if any dysmorphic features or growth deficiencies.
At the time the most important thing I saw in Peter’s face was a potential son for us and an older brother for our soon to be adopted daughter, Sophie. I saw in Peter the little boy we would soon be cheering as he turned the corner on third base or kicked his first soccer goal. I saw a budding artist whose drawings would be proudly displayed throughout our home. And most of all, I saw in his beautiful face, which was framed in sparse, lusterless hair, a three-year old child who needed and deserved to be showered with every ounce of maternal love I’d been accumulating for this long-awaited, precious moment.
So what does a child without a philtrum look like? He looks like Peter. A boy so seemingly divine he made my heart flutter and my imagination take flight. The story of our family necessarily includes an examination of the difficult reasons and way in which Peter eventually came to us. How on the heels of a truly remarkable failure of the international adoption system, and the profound grief and disappointment we endured because of it, Pat and I were given this moment of perfect possibility. Our journey toward parenthood, and Peter, was fraught with many twists and turns, highs and lows, and numerous surprises. In order to understand the final composition of our family, and the full circle of hope diminished, restored, and then redefined that Peter’s adoption represents, I first need to tell the story of the series of babies that slipped through our hands and hearts before him. Especially Ben, who for Pat and me has become a sort of ghost child.
There’s no doubt our experience with the baby we called Ben influenced our decision to adopt our son as well as the eclectic range of emotions I harbored when we first met him. My journey with Peter will never be summed up in a Hallmark Card; in fact, he and I have had very few greeting card moments. I have scratched, snarled and clawed my way toward loving my son and for this reason, our beautiful moments together feel nearly transcendent. Someday I may be able to receive a hug from Peter without remembering how far we’ve come, but for now I remember. For now, an easy, casual hug still feels like a remarkable achievement compared to the complex and immutable emotions Peter demonstrated in the orphanage and during our first eighteen months home. The child we were about to adopt ran to Pat and jumped in his arms, but he screamed with sickening alarm if I took even a single step toward him. He covered his ears and yelped angrily when I tried speaking, even in soft, hushed tones. I had no choice but to back away and watch like a polite outsider as he circled around my husband, movements stiff and robotic, rhythmically repeating his name as he marched to the inconsonant rhythm in his head.
I was worried when I first met Peter, certainly, but I didn’t panic, not right away. He was interested in toys and Pat and he liked looking at the books we brought. After a few minutes, he worked up the nerve to come close enough to grab the keys and sunglasses that I dangled in front of him at arm’s length. He was also beautiful, just as he was in the photos, though much smaller than we expected. As I watched from a safe distance, I tried to remember that this was scarier for him than it was for us. Who knows what the caregivers had told him, what he thought adoption meant, or more to the point, where the dark corners of a deprived three-year old’s imagination were taking him. He’d been in the orphanage since he was five months old, had never left the premises, taken a ride in a car, been rocked to sleep, or even seen many strangers. Two adults googling over him, speaking too loudly and in an incomprehensible tongue, naturally might overwhelm his fragile nervous system.
Peter surely didn’t know what a mother was then but he understood enough, or perhaps had endured enough, to know he didn’t want another female caretaker. We were told at the orphanage that these children, especially the boys, are interested in strange men and disdainful and distrustful of unfamiliar women. I don’t know whether this is because the women caregivers in their lives are unkind or act inappropriately or more likely, whether the children simply don’t get enough attention and nurturing and blame the gender with which they’re most familiar. At the time I was willing to chalk up Peter’s obsessive interest in Pat and his active disinterest in me as common, even expected, orphanage behavior. It would be months and months before I realized my child’s feelings toward women were complex enough to worry whether they may have had more sinister roots.
For more than two years, I would strive with varying levels of commitment and energy, and often without evidence of progress, to overcome the prejudice my son had against me, to teach him to relax in my arms, and to trust that a mother’s touch is meant to soothe and not harm. The effort has been successful. Three years after his adoption, Peter is sitting cozily next to me on the couch, his arm hooked into mine. He’s watching Winnie the Pooh as I write these very words. In the last year and a half, Peter and I have achieved intimate milestones I never dreamed possible based on our first hours, days, weeks, and years together. The two of us are living proof that love can blossom in the hostile, foreign terrain of a grossly undernourished, permanently damaged, and even genetically compromised brain. I’ve gone from being the person in the world my son most feared and distrusted to being the person he loves and needs above all else. I’ve fought hard for the privilege, but without hesitation I now can say that I am Peter’s mother.
Tags: adoption, attachment, autism, Dr. Jane Aronson, Dr. Ronald Federici, fetal alcohol, international adoption, post-institutional autism, post-institutionalized
August 1, 2007. “It is four more weeks until my birthday?” “No Peter,” I say, “your birthday is in 3 days.” Four weeks ago the question was correct, and it has stuck in his head as stubbornly as gum sticks to the bottom of his shoe. Last month I told him his birthday was in four weeks and now he can’t alter his question to accommodate the passage of time. “I will be 6 yesterday,” he continues. He flaps his arms and jumps on his toes. He’s excited. What he means is “I will be 6 on my birthday.” The past and the future are mysteries to Peter. He is grounded in the present by the weighty conspiracy of neglect, abuse, prenatal alcohol exposure and genetic anomaly. He’ll receive birthday presents from my husband and me and gobs more from adoring relatives on both sides of the family. He’ll announce every toy is his favorite and each will be cherished for the remainder of the day. Then they’ll be forgotten, each and every one, tossed aside with the growing mound of other toys received over the last two and a half years. He’ll return to playing with a single piece of Tinker Toy, a car, or maybe an Amtrak ticket stub given to him by Grandpa Frank. Ideas, toys, people, hopes, likes, and dislikes are to Peter like bubbles blown from a child’s wand, bursting from existence with the blink of an eye. I look at his gorgeous, bright-eyed face that belies an inner disharmony. I know only scattered and unreliable bits of his past but I fully understand that the future is coming, and I’m scared for my son. Like any mother, I want Peter’s future to brim with promise. But what if it doesn’t? What then?
Chapter 1: The Philtrum
After Russia, I can’t help but stare at philtrums. I think I’m doomed to obsess over this obscure but vital piece of human anatomy for the rest of my life. I see beauty in philtrums, and on occasion I can detect heartache. The philtrum is the vertical groove between the upper lip and nose. In the womb, a baby’s normally growing brain differentiates into the left and right frontal lobes. Near the end of this process, if all goes according to plan, two folds of flesh grow around the skull and meet in the front of what becomes the baby’s face. The philtrum is essentially a seam, the place where the halves of the face fuse. It’s a mark of symmetry, a talisman of sorts. A well-formed philtrum is proof of our grand anatomical design and the centerpiece of a well-formed face. A poorly formed philtrum predicts abnormal brain development.
I have an ordinary, unexciting philtrum. My husband Pat’s is a little nicer. Our daughter Sophie has a deep and luminous groove, beautiful and rich in its perfection. I smile with relief when I think of it. Peter, whom I’ve grown to love with a once inconceivable intensity, doesn’t have one at all. He will always be the half boy underwater, swimming, always swimming toward something, not sure of where he’s going because the weight of the water disorients him and his own air bubbles distort his vision and prickle his hyper-alert skin.
Lost but plucky in the vast expanse of a backyard pool. He is not whole and never will be. The groove between his upper lip and nose is silky smooth.
Well before science was able to explain the developmental significance of the philtrum, the ancients recognized its importance. The word philtrum comes from the Greek philtron, from philein, meaning, “to love”, “to kiss”. According to the Jewish Talmud, God sends an angel to each womb and teaches the unborn baby all the wisdom of the world. Just before the baby is born, the angel touches it between the upper lip and the nose and all that has been taught is forgotten. Other folklores claim that the philtrum is the spot where the angel put his finger to “shush” the baby in the womb from talking about heaven, or from telling another secret. Still other stories say the philtrum is an indent left by the finger of God Himself.
I won’t accept the cruelty of a god who would overlook my son, and so I have formed my own view. To me, the philtrum is a marker of hope. Not a guarantee of health or happiness or even normalcy, whatever that means, but a reason for optimism. Without a philtrum, there is no such thing as a healthy start. And a head start? That’s out of the question.
I haven’t always been consumed with talk of philtrums. The seed of my obsession sprouted in late winter 2004 and fully blossomed two years later. Before then, I can’t honestly say I’d heard the term, and was only vaguely aware of its presence on the human face – mine or anyone else’s.
Some time in the weeks before the tulips bloomed in Manhattan, Pat and I signed up for an information meeting being held by a local adoption agency, Happy Families, at a Jewish community center. We had long ago agreed we wanted to adopt a child, even if we successfully conceived, a possibility that was growing more remote with each passing month. And so our odyssey began that night, the first of many stumbles along the way toward adoptive parenting. The date on the advertisement was wrong, though we didn’t know it at the time, and we were a little late. We slipped into the room and sat down at a long table with several other couples and a few singles. A woman with untamable gray hair, a compelling voice and fiercely intelligent eyes was asking folks to say a little about themselves. Pat and I were nervous. We felt certain we had blundered our way into a Jewish studies seminar and our non-Jewish status was about to be found out. Worse still, maybe we had unwittingly joined a sex therapy group and were about to be asked to share intimate details about our marriage. We needed to leave, and quick.
But the woman with the wild hair asked what we hoped to get out of the “class” just as we were making our escape. I blathered something incomprehensible about a Happy Families mix-up and scurried to the door like a panicked squirrel, Pat and satchel in tow. She laughed and asked us to stay. It turns out we had walked into an international pre-adoption parenting course being hosted by Kathy Brodsky and Dr. Jane Aronson on behalf of the Jewish Child Care Association of New York. Dr. Aronson, we soon discovered, is a world-renowned adoption pediatrician, top in her field and an adoptive mother herself. We learned so much that night we decided to sign up for the rest of the course. Of the thousands of adoption-related mistakes made by us, this was by far the most providential. We never did catch up with Happy Families.
In many ways, our entire story relates back to meeting Dr. Aronson that night. She is the person who explained the importance of the philtrum to me and everyone else in the room. I remember Pat and several other men nodding in agreement when she described it as the mustache area that men hate to shave. I looked around and realized, whether consciously or not, that every single person in attendance was locating and exploring his or her own ribbon of flesh between the upper lip and nose. I was doing it too. How odd we must have looked in the presence of each other, outlining the peaks and valley of our grooves with the pads of our fingers. I remember trying to catch a glimpse of Dr. Aronson’s, as though the shape of her philtrum might reveal the mystery of the person inside.
As I learned about the philtrum, I struggled to process why this information, so seemingly obscure at the time, was so important for Pat and me to understand, and what it meant for our future child. After that night I knew I needed to make sure our own adopted children had one, that part was clear. Prospective children without philtrums are considered “high risk”, an ambiguous term with clear implications, even to a novice like me. The risk of children born with missing or “indistinct” philtrums is greatest, we were told, in Eastern European countries.