When Rain Hurts by Mary Evelyn Greene

November 3, 2010

November 3, 2010

Halloween 2010

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.

September 13, 2010

September 13, 2010

Poet's Walk (September 2010)

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

September 6, 2010

Long Island Sound (Guilford, CT, Sept. 2, 2010)

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

August 31, 2010

Pure Joy (Long Beach Island, NJ, Aug. 25, 2010)

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

August 28, 2010

Long Beach Island, NJ (Aug. 26, 2010)

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

August 17, 2010

Sesame Place, PA (Aug. 2006)

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

August 14, 2010

August 14, 2010

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

August 11, 2010

DUSO Championships (Rhinebeck, NY, Aug. 7, 2010)

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

August 9, 2010

Peter is 9! (Aug. 4, 2010)

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.

Sophie & her 8 and under teammates (Aug. 7, 2010 - Go Sea Raiders!!)

August 1, 2010

August 1, 2010

Home from the Vet (Scout, July 31, 2010)

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

July 27, 2010

Sophie's 8th Birthday (July 22, 2010)

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

July 17, 2010

Underwater Pete (July 2010)

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

July 14, 2010

Shaker Village (Hancock, MA, July 2010)

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

July 12, 2010

Hancock Shaker Village (Hancock, MA, July 11, 2010)

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

July 5, 2010

Mudge Pond (July 4, 2010, Sharon, CT)

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

July 2, 2010

Painting in the Sun (June 2010)

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

June 26, 2010

Peter, my nephew Steven, and Sophie (St. Pete Beach, FL, May 2008)

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.

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June 21, 2010

June 21, 2010 Journal Entry

Peter, Giada & Sophie in the Bounce House (Father's Day, 2010)

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 9, 2010

October 2, 2007 Journal Entry and Chapter 21

Tweetsie Railroad (Blowing Rock, NC, Summer 2005)

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.

Sophie kissing her new baby cousin (Blowing Rock, NC, Nov. 2006)

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.

Timeout (Spring 2005)

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.

St. Pete, FL (Spring 2005)

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.

Peter's Doorknob Injury (4th Birthday, 2005)

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.

First Birthday Party Home (late July 2005)

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.

A Joyful Moment (Spring 2005)

“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.

March 2005

“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.

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April 8, 2010

September 29, 2007 Journal Entry and Chapter 20

Gill's Farm Stand (Hurley, NY, September 2007)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.

My sister Patty, a/k/a "Queenie" (Blowing Rock, July 2005)

“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.”

Peter (April 2005)

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.

A Truce, Of Sorts (Poet's Walk, Red Hook, Spring 2006)

A Truce, Of Sorts (Poet's Walk, Red Hook, NY, Spring 2006)

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.

Sophie's ER Souvenir (May 15, 2005)

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.

Blowing Rock, NC (July 2005)

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?

Happily Abroad, Pre-Adoptions! (Avebury, England, Sept. 2001)

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.

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March 2, 2010

September 20, 2007 Journal Entry and Chapter 18

Late Summer (2007)

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.

Our Adoption Announcement & Christmas Card (2004)

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.

Peter playing the "Crashing, Screaming, Falling Game" (Dec. 2004)

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.

What's that big thing in the sky? (Nov. 2004)

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.

Sophie strapping in her doll for dinner (Dec. 2004)

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).

The mystery of the dancing Santa

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.

Peter's 1st Christmas (Dec. 2004)

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

September 19, 2007 Journal Entry and Chapter 17

Sophie and Peter (Summer 2005)

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.

Little Tikes Assembly Success (Nov. 2004)

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.

Aunt Paula (Nov. 2004)

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.

Sophie with her cousin Haley (Dec. 2004)

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.

Pat and Peter (Nov. 2004)

Pat and Peter (Nov. 2004)

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.

Sophie watching TV (Dec. 2004)

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.

Dec. 2004

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!”

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February 16, 2010

September 16, 2007 Journal Entry and Chapter 16

September 2007

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.

Peter's room, just waiting (Nov. 2004)

Peter's room (Nov. 2004)

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.  ThudThud. 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.

Sophie's room (Nov. 2004)

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.

Sophie enjoying breakfast (Nov. 2004)

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.

Mark and Peter (Nov. 2004)

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, Mark and me (St. Pete, FL, 1968?)

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.

Patty and Mark, assembling the trikes (Nov. 2004)

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.

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January 25, 2010

Prologue

My first babies were born under the spigot of my childhood home in St. Petersburg, Florida.  Bored with actual dolls, I began filling up hotdog-shaped balloons with the garden hose, transforming them into three-dimensional creatures in the quirky corners of my imagination.  I’d draw faces on the multi-colored balloons with magic markers, strip my various dolls down to their white baked-on underpants, and liberate the dresses and bloomers for my water borne creations.  Then I carefully placed them in extra long breadbaskets swiped from the kitchen cupboard, taking precautions with a dishtowel to protect their fragile latex skin.  Snug in their baskets, I strolled my water babies around the backyard in a green wheelbarrow, singing lullabies and telling magical stories of my own devising.  Sometimes Joy, my best friend then and now, would participate in the ritual.  We’d pretend we were sisters and the water balloons were boisterous, rowdy cousins who required time-outs and occasional spankings.

Since my mother forbade me to bring them indoors, I’d carefully tuck them into their baskets, using dust rags for blankets, and lay them in the back of a garage shelf for the long, lonely night ahead.  I loved my limbless babies and mourned each time one began to leak, or even worse, explode into liquid oblivion.  My obsession with mothering the water balloon babies began when I was in nursery school and ran its course by the time I entered first grade.  I would wait thirty more years to experience again the loving, and at times harrowing, responsibility of motherhood.

I intend to skip everything that happened in my life between the water balloon babies and the decisions leading to Birobidzhan, Russia.  Suffice it to say I met a man and fell in love, tried the traditional means of procreation along with space age medical ones, and finally set about creating our family through international adoption.  Our odyssey has been at times ordinary and astonishing, evoking feelings of shining triumph that are sometimes dwarfed by moments of profound regret and sorrow.  The vision of motherhood I developed as a young child and stubbornly clung to through my mid-thirties did little to prepare me for the challenge of loving and reaching a child whose brain was damaged by unspeakable hardship and poor prenatal judgment.  In the simplest sense, this is a story of rebirth (my son’s) and re-invention (mine).  Every day I work hard to transform myself into a mother who can successfully parent our son, a special needs child who often and actively resists the tug of intimate family life, clinging all the while to the hope that somewhere there is a path that leads to a richer life for him.  This is the story of Peter, our search for a magical path, and my journey toward forgiveness and peace.

Our Water Babies (Fall 2006)

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