When Rain Hurts by Mary Evelyn Greene

August 19, 2013

August 19, 2013

Assateague Island, MD (Aug. 6, 2013)

Assateague Island, MD (Aug. 6, 2013)

August 19, 2013. We’ve been living in Maryland just shy of two months now. We moved the day after Peter was discharged from Green Chimneys. I drove the convertible with Peter, one dog, and the hamster, and Pat drove the bigger car with Sophie, one dog, one cat, and three fish. Our orange tabby escaped the house in the last throes of loading the moving trucks and, to our collective heartache, had to be left behind.  Luckily, our neighbors rallied and he was found the next day. Paying someone to drive a freaked-out cat from New York to southern Maryland was expensive, but it beat one of us having to do it. Fifty-eight days later, we are more or less comfortably installed, and I’m on the verge of coming up for air. It’s funny – no matter how thoroughly I try to prepare for transition – for the down and dirty maladaptive behaviors that are dampened but not extinguished, nothing adequately prepares for the reality of coping with kids for whom change can be a life-threatening sensation. And I get it – I really do. Especially 58 days later when most of the debris has cleared. But it wasn’t easy. In the days and weeks following the move, we changed medications, put new safety plans in place, talked about re-hospitalization, called out the National Park police (risking an outing so soon after the move was a MAJOR mistake), cried uncontrollably for most of the Fourth of July weekend (okay, that was me), and generally prayed for a way to somehow undo what we had done. But then Peter started summer school, Sophie met a little girl down the street, both kids had birthdays, I began my new job, and well, things began to settle in, almost in spite of ourselves. It seems we’ll be okay here after all, although perhaps with an asterisk (or two). Peter has three weeks off between summer and fall sessions, and we had no choice but to plunk him in a day camp. Finding camps in August is tough anyway, even more so in a new city, and I came up empty in terms of locating a special needs camp that would take a twelve-year old. So he’s in regular sports camp with Sophie and he’s overwhelmed, over-stimulated, over-everything. But Pat has to work and so do I – and Peter can’t be left unsupervised. In fact, he still needs someone to interact with him constantly or he strays, both behaviorally and in terms of intrusive thoughts. So we haven’t pulled him out, even though the strain is showing. He’s acting out – arguing and being defiant, threatening to hurt himself or us, scratching at his arms and face, actually punching his sister, sometimes in the face (a new and troubling development). He craves routine and structure and I can’t give it to him right now, except within the confines of this camp, which I imagine for Peter is somewhat like Lord of the Flies. The other kids are making fun of him, calling him “Diaper Baby” and “idiot” and chanting “Peter has special needs”. We’ve talked to the counselors until we’re blue in the face and though I think they’re trying, they also helped create the problem. To alert the rest of the counselors, one of them wrote “has special needs” at the bottom of Peter’s name tag the first day of camp. Peter didn’t notice but you can bet every other child there did. And so now he’s branded (he would have been branded to some degree anyway, but not like this). When he came home the other night, fried and angry, I did my best to explain that although he may have some special needs when it comes to learning and behavior, those boys at camp have special needs when it comes to being good people. As he finally relaxed and let me comfort him, I whispered in his ear that I’d rather have his kind of special needsany day, and I absolutely meant it. Peter would never enjoy hurting another person’s feelings. He smiled shyly with the knowledge of that truth and then we snuggled for a few more minutes. But later that night, when he was taking his medicine, he asked me two questions that took my breath away. “Mommy,” he asked, wringing his hands and standing on tip-toe, “do people still have problems in their brain when they die?” And just as I began reeling from the question, he followed, “What I mean is, uhm, Mommy, when you go to heaven, do you still have to take brain medicine?” I couldn’t answer – not even with a gesture. The questions hit me like a heavyweight’s punch. I wanted to quit my job then and there, or at least announce I had to stay home the next week and a half and risk getting fired. I wanted to make my husband keep Peter at home with him and damn the bills (and his business) if he can’t get his work done. What I wanted more than anything was a solution. But there wasn’t. There isn’t one. We can count on one hand the people we know in Maryland and none of them are willing to babysit Peter all day long. Three more days of camp and then he’s back in school, a wonderful school where he fits in, where there are teachers who understand him, who get what his needs are, and who appreciate that sometimes a little cocooning from the rest of the world is not a bad thing. I thought the folks in our new district were going to fight us on placement – this school is not inexpensive, but thankfully they didn’t. So hang in Peter, just three more days. I hear myself repeating this mantra in my head, over and over, like the lyrics to a song I just can’t shake. Hang in, hang in, hang in. I say it for him, my stoic, soon-to-be teenage son, and of course, I say it for me.August 19, 2013. We’ve been living in Maryland just shy of two months now. We moved the day after Peter was discharged from Green Chimneys. I drove the convertible with Peter, one dog, and the hamster, and Pat drove the bigger car with Sophie, one dog, one cat, and three fish. Our orange tabby escaped the house in the last throes of loading the moving trucks and, to our collective heartache, had to be left behind.  Luckily, our neighbors rallied and he was found the next day. Paying someone to drive a freaked-out cat from New York to southern Maryland was expensive, but it beat one of us having to do it. Fifty-eight days later, we are more or less comfortably installed, and I’m on the verge of coming up for air. It’s funny – no matter how thoroughly I try to prepare for transition – for the down and dirty maladaptive behaviors that are dampened but not extinguished, nothing adequately prepares for the reality of coping with kids for whom change can be a life-threatening sensation. And I get it – I really do. Especially 58 days later when most of the debris has cleared. But it wasn’t easy. In the days and weeks following the move, we changed medications, put new safety plans in place, talked about re-hospitalization, called out the National Park police (risking an outing so soon after the move was a MAJOR mistake), cried uncontrollably for most of the Fourth of July weekend (okay, that was me), and generally prayed for a way to somehow undo what we had done. But then Peter started summer school, Sophie met a little girl down the street, both kids had birthdays, I began my new job, and well, things began to settle in, almost in spite of ourselves. It seems we’ll be okay here after all, although perhaps with an asterisk (or two). Peter has three weeks off between summer and fall sessions, and we had no choice but to plunk him in a day camp. Finding camps in August is tough anyway, even more so in a new city, and I came up empty in terms of locating a special needs camp that would take a twelve-year old. So he’s in regular sports camp with Sophie and he’s overwhelmed, over-stimulated, over-everything. But Pat has to work and so do I – and Peter can’t be left unsupervised. In fact, he still needs someone to interact with him constantly or he strays, both behaviorally and in terms of intrusive thoughts. So we haven’t pulled him out, even though the strain is showing. He’s acting out – arguing and being defiant, threatening to hurt himself or us, scratching at his arms and face, actually punching his sister, sometimes in the face (a new and troubling development). He craves routine and structure and I can’t give it to him right now, except within the confines of this camp, which I imagine for Peter is somewhat like Lord of the Flies. The other kids are making fun of him, calling him “Diaper Baby” and “idiot” and chanting “Peter has special needs”. We’ve talked to the counselors until we’re blue in the face and though I think they’re trying, they also helped create the problem. To alert the rest of the counselors, one of them wrote “has special needs” at the bottom of Peter’s name tag the first day of camp. Peter didn’t notice but you can bet every other child there did. And so now he’s branded (he would have been branded to some degree anyway, but not like this). When he came home the other night, fried and angry, I did my best to explain that although he may have some special needs when it comes to learning and behavior, those boys at camp have special needs when it comes to being good people. As he finally relaxed and let me comfort him, I whispered in his ear that I’d rather have his kind of special needsany day, and I absolutely meant it. Peter would never enjoy hurting another person’s feelings. He smiled shyly with the knowledge of that truth and then we snuggled for a few more minutes. But later that night, when he was taking his medicine, he asked me two questions that took my breath away. “Mommy,” he asked, wringing his hands and standing on tip-toe, “do people still have problems in their brain when they die?” And just as I began reeling from the question, he followed, “What I mean is, uhm, Mommy, when you go to heaven, do you still have to take brain medicine?” I couldn’t answer – not even with a gesture. The questions hit me like a heavyweight’s punch. I wanted to quit my job then and there, or at least announce I had to stay home the next week and a half and risk getting fired. I wanted to make my husband keep Peter at home with him and damn the bills (and his business) if he can’t get his work done. What I wanted more than anything was a solution. But there wasn’t. There isn’t one. We can count on one hand the people we know in Maryland and none of them are willing to babysit Peter all day long. Three more days of camp and then he’s back in school, a wonderful school where he fits in, where there are teachers who understand him, who get what his needs are, and who appreciate that sometimes a little cocooning from the rest of the world is not a bad thing. I thought the folks in our new district were going to fight us on placement – this school is not inexpensive, but thankfully they didn’t. So hang in Peter, just three more days. I hear myself repeating this mantra in my head, over and over, like the lyrics to a song I just can’t shake. Hang in, hang in, hang in. I say it for him, my stoic, soon-to-be teenage son, and of course, I say it for me.

May 5, 2013

May 5, 2013

Mudge Pond, Sharon CT (May 4, 2013)

Mudge Pond, Sharon CT (May 4, 2013)

May 5, 2013.  Spring officially has arrived in the mid-Hudson Valley, but it sure has taken its time.  First came the Forsythia, then daffodils, cherry trees, and now even a few tulips.  Grass has finally transformed the barren landscape just as the spring leaves arrive. The nights are still cold, unseasonably really, but the days are warming gloriously.  I have never taken our town, our beautiful countryside, for granted, and I certainly mustn’t now.  We’re moving to Montgomery County, Maryland, a fact that leaves me feeling both excited and a little forlorn.  I love Red Hook and the Mayberry-like existence that all its residents enjoy.  Unlocked homes, unlocked cars, unlocked bikes, and a friendly smile at nearly every turn.  Given the natural splendor that surrounds us – the organic farms, the Catskill Mountains, the historic buildings, the mighty Hudson River, I don’t understand why the area isn’t overrun with transplants.  But of course, I’m glad it’s not.  We’re moving because I’ve taken a position with an environmental nonprofit in Washington, DC.  I’m going back to work full-time.  It’s a dream job for me but it wasn’t an easy decision.  Not only will it be hard leaving the home we love, it feels like we’re jumping off a cliff when it comes to Peter, and even Sophie.  We finally have both kids in wonderful schools and now we’re yanking them out.  Peter’s time at Green Chimneys has been nothing short of transformative.  He arrived there, almost two years ago, a confused, angry, out of control, and self-abusive child.  We feared for his safety and for that of our daughter.  Today he is an increasingly confident eleven-year old, a leader in his classroom and his dorm.  He’s proud of his accomplishments and so are we.  He is more centered, regulated, and connected than we ever dreamed possible. But he’s also vulnerable, and all involved in his treatment realize that he requires continued intensive support to remain successful.  In every way, his ability to cope with the outside world is as fragile as the many seedlings fighting their way through the soil toward the warm spring sun.  And so what will Maryland bring?  The good news is that Peter will be transitioning from residential treatment to a day program.  That constant feeling that something’s wrong, that our family’s not whole, that I’m missing a limb, will surely disappear.  But the staff at Green Chimneys keeps the kids busy from the moment they wake up until the exact moment the lights go off at bedtime.  It’s a key component of their success formula.  Children with self-regulatory issues don’t cope well with free time.  It’s not possible to replicate this kind of regimentation (albeit benign) in the home.  Peter is going to have to cope with less structure.  He’s going to have to learn to occupy himself, at least a little, after school and on the weekends.  He’s going to have to learn to handle change in plans and the occasional unexpected . . . whatever.  For our part – and wow, I do realize that most of his success (and thus our family’s) depends on how Pat and I handle the every single day around-the-clock challenges, we’ll need to find a way to remain patient, forever consistent, vigilant, and braced against provocation.  A tall order, especially given that all of us are facing so much change.  For me, a new career, a long commute, a relinquishing of some of the day-to-day responsibilities.  For Pat, who works from home, it means more childcare, more Peter, more errands in gridlock traffic.  For Sophie, a myriad of change conspiring to fuel new anxieties: a new school, new kids, a new “forever” home (this will be # 3), and a formerly volatile brother re-entering her daily life.  For all of us, saying goodbye to the landscape we love.  Just today we watched our neighbors sheering llamas and alpacas for the 4-H club.  I doubt we’ll be running into llamas much in Maryland.  All of these changes are stressful but well within the boundaries of what any family faces in the midst of major change.  But as always, the health and tenor of our family depends primarily on Peter’s state of mind, and so his adjustment is the wildcard.  Will a new school district fight us in terms of placement?  We and Green Chimneys feel strongly that he needs to be in a specialized, private day treatment program, and we’ve got our eye on a few. His treatment team laughed, literally, at the idea of Peter re-entering a public school program, even an imbedded self-contained one. I’m hoping the fact that he’s coming from an RTC (where he has a 1:1 aide), and that we’ve already taken a school district to hearing and won, will squash any thoughts on the new CSE’s part that they can handle Peter in district.  They can’t.  We’ll file for hearing immediately should they signal otherwise.  We won’t let another school district rip our home, our family, our stability, and our safety to shreds in an effort to save a few dollars or prove a point.  Hopefully the saber rattling won’t be necessary.  I’m doing my best not to focus on the what-ifs right now and instead attend to what’s before me.  Today it’s sorting through closets, and barbequing, watching llamas and grocery shopping, and hopefully playing cards with the kids and Grandma after dinner.  It’s late afternoon and the weather is perfect.  I drive down my road (in my convertible) and breath in the fresh scents of spring in the mid-Hudson Valley.  I’ve tried for years to come up with viable employment here but it just isn’t possible.  Mine is a city girl’s career.  And so soon we’ll be heading to the city, where energy abounds to help propel us into this next chapter of our lives.  In all likelihood, Peter will become an adult there.  Not in the insulated, blissfully frozen-in-time Town of Red Hook, but in a large metro, urban environment with lots to offer and lots to tempt.  But I’m ready for this.  I’m excited about my job and I’m glad Peter’s coming home.  I just hope everyone else is ready too.

January 23, 2013

January 23, 2013

Visting the new camels at Green Chimneys with Aunt Patty (Jan. 2013)January 23, 2013. One of the many challenges of
 raising a child like Peter is coming to terms with the unequivocal 
realization that his needs supersede all others. No matter
 what the circumstance, if he’s not in a good place – in terms of
 mood, comfort or temper, then those within the perimeter of his 
reach will suffer too. There was a time when I rebelled
 against the restraints that this conclusion imposes, but I now
 understand that resistance is pointless. I have a number of
 major decisions to make in the next few months, and their impact on 
Peter is forefront in my mind. A few years ago I wrote a
 chapter for a special needs parenting anthology devoted to how I
 finally came to terms with the fact that I had to stop pouring
 every ounce of energy, and all our dwindling finances, into 
improving our son’s fate. I had chased the elusive “cure” for
 so long – and jeopardized the rest of the family’s well-being in 
the process, but I knew it had to stop. Although I wasn’t
 giving up on Peter, I had no choice but to acknowledge that my 
frenetic quest to make him whole was tearing the rest of us 
apart. I’ve tried to honor that reality, though some days I’m
 more successful than others, and Peter continues to do just as well 
(or not) as when my days and thoughts were 100% consumed with 
healing him. I still believe what I wrote in that anthology 
(Easy to Love But
 Hard to Raise), and I think it’s a confession that 
many parents of challenging children might be relieved to hear, but 
what I’m grappling with now is different. Any decision I make
 for myself – or that impacts the rest of the family, by definition
 must 
take into account, first and foremost, its affect on Peter.
 The few people I’ve spoken to about these upcoming decisions –
including some family members, urge me to stop thinking so much
 about his needs and focus a little more on everyone
 else’s, even my own. It sounds a lot like the 
argument I posed to myself when I wrote for the anthology.
  But it’s not – in fact, it’s completely different. I will 
never have the luxury of making a decision that omits an intricate 
analysis of how my choice might impact Peter.  I’ve been very
 optimistic in recent months about our son’s progress and our 
ability to transition him back into a home-based program. I
 detest the fact that on most nights, instead of kissing his 
forehead and tucking him in, he and I are forced to say goodnight 
over the telephone. I want him home; it’s that simple.
 But intrusive thoughts are again encroaching on the landscape of
 his mind, and this resurgence of psychiatric instability is a cruel 
reminder that hopes and dreams do not always proceed in a parallel
 course with reality. Peter hurt his sister a few weeks ago
 and he’s hearing voices again, voices that are violent and scary, 
both for him and us. My gentle son, who wouldn’t normally harm
 a flea, is doing his best to fight off the demons buzzing in 
his brain, at times with deviant intent. For a few days, a
 few weeks ago, he lost that battle. Sophie is working to
 shake off the trauma and I’ve gone back to timing my bathroom 
breaks in a way that protects against an even 30-second window of
 unsupervised opportunity in case the directive of the voices are
 stronger than Peter’s ability to reject them. It was an unwelcome 
but undeniable wakeup call. Peter is not yet ready to leave 
residential school – it’s not safe. He acknowledges that the
 voices and visions are more frequent at home and he told his social
 worker that he thinks it’s because he isn’t surrounded by staff the
 way he is at school. Idleness and alone time are his mind’s
 arch enemies. For Peter, unstructured play in the family room
 while I make dinner in the kitchen – 20 feet away and within easy
 sight and sound of each other, sometimes triggers overwhelming anxiety that 
in turn can trigger aberrant, potentially dangerous thoughts.
 Constant activity coupled with constant staff presence helps to 
keep his wandering mind in check. It’s amazing that Peter can 
articulate this – that he now possesses the insight and the 
language, but it’s also profoundly sad. It means he’s not yet
 ready to come home, it reminds me that whatever decisions I need to
 make in the next few months must take this into account.
 Parents never are free to act solely in their own best interests –
its part of the bargain we honor in exchange for the great
 privilege of motherhood and fatherhood, but parents like me – of 
kids like Peter, relinquish so much more. The reality 
of these circumstances pit financial security against physical
 safety, marriage against parenthood, one child’s needs against a 
sibling’s. There’s a course to chart but its one of discrete, 
not boundless, possibilities. I accept this – it’s an 
immutable fact, but I don’t much like it. When Peter emerged 
from his psychotic rage – the first, by the way, he’s had in almost two 
years, his exhausted body convulsed with waves of horrifying 
self-reproach. “Why,” he implored, angry self-inflicted
 welts rising on his cheeks as he sobbed, “why couldn’t you stop me,
 Mommy?” If only I could have answered his anguished question. If only I could have stopped him. Maybe then we wouldn’t be in this
 position.

November 7, 2012

November 7, 2012

New Jersey (October 2012)

New Jersey (October 2012)

November 7, 2012. As temperatures fall in the mid-Hudson Valley, as late autumn breezes cajole the last stubborn leaf from its perch, I have much upon which to reflect. Superstorm Sandy somehow missed us, the conspiring, unrelenting forces of wind, rain, colliding weather fronts, and warming oceans bypassing our town with an unexpected wink of the eye. I’ve never understood why some are spared while others suffer, God’s role, if any, in the drama of our lives remaining impossibly muddled, at least to me. Another Nor’easter is on its way, though this one is predicted to bring snow, not rain, and I pray it spares the northeast from further devastation. My friend in hospice lost her battle to cancer last week, her last days racked with pain that even the strongest opiates failed to quell. I felt relief when I heard the news because no good ever comes from that brand of agony. This woman led a just and purposeful life, yet there was nothing fair about the way she suffered. Peter, whose capacity for compassion seems almost divinely instilled, also has been barraged with an unfair, overwhelming array of assaults that rob him daily of both faculty and opportunity. These kinds of juxtapositions are impossible to align yet we’re tasked with making sense of them throughout the entirety of our lives. The weekend before last, Peter’s impulses, which can be dangerous at times, prevailed over his increasing ability to control them. Though it’s tempting to blame what became a disastrous weekend on the storm barreling toward our region – along with the preceding uncertainty, stress, and change in routine, it wouldn’t be true. Peter was completely unaware of the storm until Sunday night and even then showed little appreciation for the danger it presented. But both mornings he woke up sullen and grumpy, a fail-safe forecast of how the rest of the day will unfold. On days like these he drags his feet, hunches his shoulders, whines when he walks, and pulls at his hair and glasses in response to even the most mundane request, such as to get dressed or use the toilet. The simple truth is that he labors more heavily on some days than others. The Saturday before last, I hears the unmistakable howl of an injured child and I ran outside to find Sophie trembling, her face pale as she clutched her wrist. She could barely speak but the horror in her eyes let me know that whatever happened was Peter’s doing. He threw a heavy, rock-hard plastic ball at her, with as much force as he could, from very close range. At first I was afraid her wrist was broken but after a half hour of ice and a dose of Motrin, she quieted down. Our neighbor, who is a nurse, stopped by and felt that it was a deep bruise, not a fracture. It turns out she was correct. Peter could not explain his behavior other than to say she had been bothering him. The next day, he continued his out-of-character actions by laughing hysterically while he kicked a boy who had fallen on the ground. By all accounts, this attack, which took place during his best friend’s birthday party, was unprovoked. It turns out that Peter didn’t even know this child. It’s a good thing the father was nearby because the boy he went after was twice his size and apparently ready to beat the crap out of him. And honestly, who could blame him? The father called us, thankfully, and asked that we pick Peter up immediately. I don’t know what triggered these episodes. On the way home from the party, Peter began hitting himself and pulling his hair. He screamed that he wanted to kill himself. He was embarrassed, ashamed, frustrated and perhaps most of all, confused. I’ve learned a trick or two over the course of the last eight years and was able to get him calmed down before he did any further damage to himself or anyone else. By the next day he was more or less back to normal, the incidents forgotten. He went back to school Tuesday night after the storm had moved out and we brought him home again last Friday. The next day, Peter and I were sharing a few quiet moments in our bedroom before Pat and I needed to leave for my friend’s funeral. As he watched me put on my jewelry and comb my hair, Peter told me that he was sad I had lost my friend. I assured him that I was too; but I also tried explaining that it needed to happen. She was not going to get any better and she was in pain. I told him that I was relieved that her suffering was over and that she was now with God. Almost instantly, his eyes filled and he began to sob. My son, the boy who attacked his sister and a stranger only days before, without explanation, was overcome with grief and sympathy. “I didn’t know she was in pain,” he cried. My beautiful, beautiful boy. Until then it hadn’t occurred to him that dying could be painful and that my friend may have suffered. I don’t spend much time anymore imagining what Peter would be like had he been conceived and born under different circumstances – I realized some time ago that it’s the wrong question to frame, but I couldn’t help it just then. Why this child, with astonishing ability to empathize and an emotional intelligence that is blooming with increasing depth and richness, has to endure these deficits, deficits that could have, should have been prevented, is impossible to understand. As I prepared to honor my friend’s memory that afternoon, I made a little extra room in my heart and mourned for Peter’s loss as well. For his damaged brain, for his neurological outbursts that cause him to act in ways that he can’t explain and for which he’s ashamed, and most of all, for appreciating that he now and forever understands that even the last moments of our lives can be – and often are, filled with struggle and pain.

September 19, 2012

September 19, 2012

September 15, 2012

September 19, 2012.  I find anger easier than sadness.  We externalize anger, we tell ourselves but for that other person or event, we’d feel more rational, calm, emotionally even.  Anger can be destructive, it can leave victims scattered far and wide, but it’s also readily dispersed.  I used to be so angry with Peter – for the harm his disabilities did to our family, our marriage, my career, my sense of who I was, and who I wanted to become.  At times, this anger gave me energy that I channeled, using it to wage war against enemies perceived and imagined, anyone who got in the way of reaching our son, of stopping the madness.  I also used it like a shield, protecting myself against the searing pain of self-reproach, allowing it to wedge distance between who I felt I was and that less certain place where doubts and regrets find harbor.  But then it went away.  The anger just went away.  Peter’s and my perilous but ultimately successful journey to intimacy snuffed it out.  With the anger gone, I was left alone to examine my role in our family’s course, good and bad, alone to ponder how to move in my life without this compass forged from ire.  There was space where none had been before.  I’ve been learning to live in that space – to even revel in it, but now a kind of sadness is taking hold.  I find it’s draping my view, the landscape of possibility, choice, and consequence, like heavy, velvet curtains.  For so long I tried to keep my son at arm’s length, the anger helping to protect me against emotions too difficult to absorb.  But I wasn’t successful, obviously, and for that I’m very grateful.  I’ll never be afraid to love my son again.  Peter and I are now as emotionally connected as conjoined twins.  It’s a thing to celebrate and I mustn’t malign what I realize is a soaring accomplishment.  But this lifeline between us is also what’s causing my sorrow.  Peter’s melancholy of late is more contagious for me than the flu.  I ache at night hearing the hurt and loneliness in his voice, a depression growing alongside his mind and body.  He’s becoming more aware of his disabilities.  He’s beginning to visualize the perimeter of his capacities.  For instance, he now confides in me that he’s terrified of the bathroom, of the hallucinations that bombard him when he’s alone.  Sometimes, especially in public restrooms, he emerges ashen, the fear evident on his features.  The other day I took the kids to Subway and I could tell he was upset when he exited the bathroom.  “Those teenage girls were making fun of me,” he explains, his head bowed and shoulders limp.  I saw the interaction – they stared at him, probably because he looked like he’d just seen a ghost, but they didn’t laugh or point or heckle.  They just took notice.  But Peter’s emerging self-awareness is also turning into self-deprecation; he’s not always happy with what he sees.  He doesn’t want the baggage he carries and is growing increasingly sad that he can’t shed the weight.  He’s starting to understand that he’s at Green Chimneys not because he learns differently – as we so carefully preach, but because his brain, complements of alcohol, isn’t assembled correctly, and this causes misfirings mostly beyond his control.  We kept him home Monday even though he had school because Pat and I realize that he’s struggling and needs our support.  My every instinct is to pull him to me, to keep him close, to lessen his pain.  This awakening – both sword and shield – is not something an 11-year old boy should be made to navigate alone, at a residential school, with no one there to hold him through this period of uncertainty and grief.  He needs us to lend perspective, encouragement, acceptance, and understanding.  It’s impossible to do over the telephone, and this too makes me profoundly sad.  Later in the day, knowing that in a few hours Pat would drive him back to school, he waits until Sophie is elsewhere and says that he’s going to miss me.  There’s no yelling or screaming or throwing of objects, just quiet tears accompanying a quiet fact.  When I go to him, when he then asks why he can’t be home with us every day, I do my best to explain that Green Chimneys is helping his brain, that what he’s learning there will help him as he gets older, as he grows up and becomes a man.  I tell him it won’t be forever.  It’s a flimsy overture and one he sees right through.  “But I don’t care when I’m grown up,” he wails, tears soaking my t-shirt as I rock his 86 lb frame.  “I want to be just a boy at home with my mommy, right now!”  He holds me so tight I feel his heartbeat rise in rhythm to his staccato cries.  “I want you with me, too,” I whisper, unable, incapable of lying any further.  We stay locked together until our emotions quell and we regain some hold on optimism and better spirits.  There is no doubt that anger is more manageable than sadness.  After dinner, I help Peter gather his things, long pants and shirts, his new spy glasses, and his weighted blanket, which he now wants in the dorm.  I kiss him goodbye and hold him tight.  I realize that both of us prepared in advance for this moment, we are braced against the flood of emotion that swept through only hours before.  What I let slip earlier is still true.  I want Peter home.  Pat later tells me that Peter draped his weighted blanket over his shoulders for the walk back to his dorm.  It’s an all too-fitting image.  The pain of separation is becoming greater than the turmoil his presence exacts.  Whether we can find the supports to have him home fulltime.  Whether we have the reserves to weather, daily, the inevitable storms.  Whether Peter now has the skills to manage less regimented family life.  Whether we can inoculate against the possibility of another horrifying psychiatric hospitalization.  These are questions I can’t answer now but that deserve real consideration.  Before he leaves the house, I whisper in my son’s ear that he’s doing everything right.  He’s quick to retort, my blossoming son, not in anger or defiance, but with quiet admission.  “It doesn’t feel that way, Mommy.”  My heart lurches.  I know what he means.  Peter and I, we’re in that space right now from where sadness comes.

September 12, 2012

September 11, 2012

Maine (Summer 2005)

September 11, 2012.  Our lives march forward, eleven years beyond that crisp, sparkling morning.  A day that for most of us will remain “that” day, that morning whose awaiting horror quickly would shroud the promise of its brilliant blue sky splendor.  In many ways this day belongs to all of us, and we to it.  I saw things that morning that I was never designed to witness.  I still change the radio station or TV channel whenever the media revisits the details.  I can think about what I saw, a few short blocks from the attacks in lower Manhattan, I can see the events in my head as precisely as I see the screen upon which I write, but then I hit a wall.  I wasn’t in the Trade Towers, I wasn’t close to anyone who died.  As merely part of the terrified, disoriented crowd scrambling to escape, I appreciate my good fortune.  But I remember noticing the glass shards swirling overhead, beautiful, like glitter in the sky, as I fought my way toward Pat’s apartment amid shouts warning of bombs in the subway, the courthouse, and countless other landmarks along my route.  I also remember watching a man and woman join hands as they chose to jump from an impossibly high floor of one of the buildings, the woman’s billowing skirts shrouding her face from death’s approach.  My mother had died in a bizarre accident only four months earlier, her injuries sustained on the day I moved from Atlanta to New York.  The events of 9/11 having mixed together like batter into this most intimate loss, my heart lurches, my eyes well, whenever my thoughts wander too far into the territory of those experiences.  And so I turn off the switch.  It’s an experience I store in a cavernous place, a precarious repository, carefully segregated from the rest of my everyday life.  Or so I think.  I realize intellectually that such an exercise is futile, that we can’t just choose to avoid examining our traumatic experiences.  In some ways I was always vulnerable – “you feel too much,” my mother would warn; even minor acts of unkindness can now invite, if I’m not careful, an over-sensitive reaction, as though my lifelong quota for temperance was fulfilled, all at once, on that horrific Tuesday morning.  That day changed me, there’s no doubt.  It shook a part of me that I thought was secure, and it reminds me of our children.  Peter’s problems may be largely organic, they’re caused by physical, measurable brain damage, yet I can’t deny that his response to the world, with all its promise and at times, predation, is colored by his pre-adoption experiences.  Abandoned by a teenage mother, left wallowing with an invalid, wheelchair bound great-grandmother, and then whisked into an orphanage where he was fed, presumably, but not spoken to, held, or ever soothed.  Sophie’s start was not much better; for all we know, it might have been worse.  My brush with profound sorrow dwarfs the trauma suffered by my children, babies whose only way of assimilating their experiences was to weave them seamlessly into the fabric that would clothe and color their every thought, feeling, decision, and reaction.  Separating that chemical fusing of abuse and neglect with infant development is more difficult than untangling a giant ball of yarn from a roomful of kittens.  It may be impossible.  It’s easy to give up on yarn – you just toss it in the garbage.  But children?  No, with children we’re tasked with trying to tease the damage away, using every possible tool in our arsenals to restore hope.  Some days are more successful than others but at least I now appreciate that we’ve found the path.  Peter’s been back-sliding at school the last few weeks, and at home too.  He’s lost many of his dorm privileges and has to go to bed early, which means our nightly bedtime calls also have been curtailed.  I don’t know whether this is deliberate consequence or just a scheduling problem but I worry that cutting off his lifeline to home is only fueling the fire.  He’ll be with us this weekend and I’ll make my own assessment then.  When he’s like this I lose patience – and sometimes hope.  It reminds me that my growing optimism that we’re equipped to have him home 24/7 again may be over-inflated.  But when he’s home this weekend, if he tantrums and slings acrimonious words, I’ll remind myself of who he is, of what he’s endured, and most importantly, from where we’ve come.  Remembering 9/11 will help.  We’ve emerged, all of us, not unscathed or innocent, but with enormous resiliency and on the part of our children, especially, with undeniable bravery.

August 18, 2012

August 18, 2012

Peter’s 11th Birthday (with new iTouch and headphones), August 4, 2012.

August 18, 2012.  I think this will be the last journal entry I write before irrevocably handing the “final” manuscript over to Red Hen Press.  It’s so hard to know what to say, or where to find conclusion.  Peter is at school and won’t be home until Friday, though he’ll be with us then until after Labor Day.  Sophie is starting a new school, a small Catholic school across the river, and I know the anticipation of new kids and routines looms heavy.  Pat and I thought seriously about rejoining the Catholic Church – after all, we’re sending our daughter to Catholic school, but in the end we decided against it.  Neither of us is ready for the suspension of certain convictions that such a move necessitates.  We both want our kids to have spirituality in their lives and the chance to have a meaningful relationship with God, but it won’t be as Catholics, at least not for now.  Pat and I met with Peter’s treatment team at Green Chimneys last week, and we’re very pleased with his progress.  “He’s definitely a kid moving toward discharge,” words from the attending psychiatrist that resonate like song in my heart.  The when and the where and the under what circumstances are yet to be determined; I continue to struggle but am working hard to resist the urge to plan for and accommodate the future beyond the next few weeks or months.  We stop by Peter’s classroom before leaving to say hello and steal a hug.  The room is naturally lit (no overhead lights), the handful of boys who occupy it quietly attending to their separate endeavors.  It’s the complete opposite of the raucous, crowded classrooms he was made to endure for so many years.  Time to process is needed even when it comes to recognizing Mom and Dad’s faces, and so we wait for him to assimilate our unexpected presence.  When he does – when that light bulb finally flicks on, his pleasure overflows immediately, filling the room with contagious energy.  He nearly bowls me over as he races to grab hold, jumping us both up and down while exclaiming, “Mommy!  Mommy!”  I never heard him call my name this happily when he was three or four or five, but hearing it now, at eleven, is more than enough.  Soon everyone is laughing and saying hello, the vibe celebratory, as when a holiday awaits.  I’ve shed so many tears over the years that moments like these – unexpected moments that cause my eyes to water with joy rather than sorrow, can never go unmarked.  On the drive home, I carefully wrap the memory like a present.  There is plenty for which to be grateful.  As I lay awake last night, somewhere between worrying about special needs trusts and our outstanding tax bill, I thought of a Tim O’Brien story that forever will stick in my mind, called The Things They Carried.  It chronicles how a soldier in the Vietnam War stripped away his memories, his hopes, his dreams, and the accompanying physical possessions he carried in his rucksack as reminders, little by little with each passing day, until he carried nothing.  At first he clung to certain keepsakes but he soon realized they added physical and emotional weight.  In the end, the soldier is left with nothing but the raw instinct to continue living, to kill or be killed.  His memories of being loved and of having loved are erased, forever, leaving the reader to ponder whether physical survival alone can ever really constitute living.  It’s a haunting story and a cautionary tale.  I’m keenly cognizant that I find myself in the opposite position these days.  I don’t want to take the analogy too far – after all, family struggle is a far cry from combat, but there was a time when I also actively engaged in the shedding of self in order to reemerge as something different, stronger, harder, more impenetrable.  But it was a mistake and I’m finished with it.  Parenting my son has made me stronger, yes, but if my heart hadn’t been open, at least cracked a little, we never would have found each other.  I never would have known that Peter’s soul is lush and rich, the opposite of what I feared in those first, unbearably difficult years.  Sophie would never have had the benefit of seeing, firsthand, that even impossible obstacles are capable of being hurdled.  And Pat and I, if we didn’t know before, now appreciate that for us, The Things They Carried – that thing or memory that keeps all of us bound to a world beyond our own existence, is each other.  Never in a million years could I have guessed that two Russian toddlers, both abandoned, neglected, and deprived, and one with significant brain injury, would ever teach me so much.

June 4, 2012

June 4, 2012

Assateague Island, MD (May 24, 2012)

June 4, 2012.  We’re 10 days home from seeing Dr. Federici in northern Virginia for Peter’s bi-annual neuropsychological assessment.  Dr. Federici’s a significant reason why we’ve come as far with our son as we have, his evaluations providing a litmus test upon which we measure past efforts as well as an invaluable roadmap for the future.  These visits are difficult for Peter, though.  They’re demanding of his focus and attention in a way he’s not quite equipped to handle, and the information gleaned from them hasn’t always been easy for us to process.  Words and phrases like psychosis, autism, lifetime care, FAS, significant support, mood dysregulation, and cognitive deficiencies  – they’re difficult to swallow and enough to scare anyone.  But those particular descriptors didn’t loom so heavily this time.  Something has changed – something really significant, and great.  The very best part is that Pat and I knew it before Dr. Federici even told us.  Peter is better.  Not just a little bit better but about 40% better in every area of functioning (except academics where there’s been little gain).  I’ve never seen Dr. Federici look so pleased.  I couldn’t decide whether he was beaming like a proud papa or looking more like a small child ready to bust with exciting news.  Either way, we sat in his office after the testing, relaxed and full of banter, trading complements and accolades like a small band of combatants who’ve just conquered a formidable enemy.  After almost 8 years of constant effort and struggle, we may have turned the corner with the boy I once described – quite accurately, as feral.  Today Peter is happier, more centered, more trusting, showing better reasoning and problem solving skills, demonstrating improved language skills, and exercising more independence and ability to adjust to changing circumstances.  Dr. Federici credits this positive leap to two things: the cumulative effect of our efforts and our success in finally getting him placed in an appropriate therapeutic environment.  The only asterisk that looms over my otherwise warm and glowing feeling is the knowledge that Green Chimneys School is achieving what Pat and I could not.  I realize that we’ve brought Peter a great distance, and in some ways I recognize that many others might have given up where we persevered, but I still ache with the wish that this last, most victorious push could have been achieved in the intimacy of our home.  I’m thankful that Green Chimneys is achieving what we couldn’t, but the truth is, I’m also a little resentful and jealous.  Peter wants to be home, he clings to me during our visits and his eyes well up with tears on our drive back Sunday nights.  It’s hard to reconcile this Peter with the boy who used to smear feces on himself and spit on me;  but I suppose knowledge of our troubled past only makes the hopefulness of the present that much more luscious and remarkable.  The only problem is that I want to whisk my son away, back into my arms, to the love that’s grown as steady and unstoppable as the rising sun, but I know I mustn’t.  Sometimes I feel like an estranged mother contemplating parental kidnapping.  There’s a cost to progress, at least in our case, and it comes in the unwelcome form of mutual heartache and homesickness.  Peter needs the 24/7 supervision, the 1:1 staff who help keep his impulses in check, his distractibility minimized, and who constantly talk him down from his various tirades and skewed perceptions.  We can do this at home – I’ve become particularly adept at various strategies, but I can’t sustain it indefinitely.  I realize that it’s only a matter of time – 10 days, maybe 2 weeks, before Peter’s challenges begin to outwit my stamina, patience, and commitment.  I realize, with more than a little melancholy, that the reason he’s 40% better is because Green Chimneys and its plethora of strong young men and women on 8-hour shifts don’t give his mind or body an opportunity to decompensate or unravel, at least not for very long.  I should be grateful for this and in fact, I am.  It just stings a little.  A wise doctor told us almost two years ago that Peter needed a system of supports, a circle of providers that extended further and deeper than two parents could simulate or sustain.  I need to realize and believe that Green Chimneys’ victory is our victory too, that the endeavor is a collective one and that it’s not an either/or proposition.  Although my mind knows this to be true, my heart requires a little more convincing.  After the testing, we drove to Ocean City, MD for Memorial Day Weekend and spent most of the time on Assateague Island, enjoying the beach and the wild ponies.  Watching Peter navigate the cold, crashing waves, the gritty sand, the always changing conditions of the shore, without the stiff and bracing posture, his usual guarded, super-sensitized body language, truly was exhilarating.  For the first time ever, he wasn’t the boy on the beach with obvious issues and challenges.  He was just a boy on the beach, a wonderfully happy boy, who alongside his sister, was filled with the ordinary joys that we as parents all hope permeate our kids’  childhoods.  When we got home, and Peter was tucked into bed before going back to school the next morning, he hugged me fiercely and asked, “Did I have a good trip, Mommy?”  Knowing he was asking about his behavior and not whether he had a good time, I smiled into his eyes, fighting back my tears.  With as much composure as manageable, I assured him that he did.  And it’s true.  Peter, our beautiful, enigmatic, and resilient son, had a wonderful trip indeed.

December 22, 2011

When Rain Hurts – Publication Date Sept. 2013 (Red Hen Press, LA)

November 2011 (Red Hook High football field)

Red Hen Press, a nonprofit literary press in California, is publishing When Rain Hurts, which will be released in trade paperback on September 15, 2013.

In the published book, a narrative chapter will be preceded by a journal entry and photograph.  I have many, many more journal entries than chapters so I’ve picked the ones that I think offer the most complete story.

The personal stories, support, information, and compassion you’ve shown as I struggle to become a better parent and more effective voice for FASD never ceases to amaze or humble.

If you’re new to the blog – welcome.  To read the book’s beginning chapters, please scroll to the bottom of this screen, hit “next page” on the lower left corner, and then scroll again to your screen’s bottom. That’s where you’ll find a brief Introduction & Prologue, then Chapter 1, etc.  Read “up” for each subsequent chapter.   They’re a little like diamonds in the rough – they’ve been edited and polished significantly since posting, but you’ll get the gist.  Older 2010 journal entries are filed under “Pages” on the right hand column.

Thanks – Mary

April 12, 2011

April 11, 2011

Aunt Pattys Birthday Visit (March 2011)

April 11, 2011.  Peter is in a psychiatric hospital for the second time in eight weeks.  It’s taken me this long to put these words to paper because the concept both terrifies and repels me.  In many ways I’ve become numb of late, shut down and unfeeling, or maybe just braced against the inevitable difficulties and choices that await.  Our family’s future remains uncertain.  Pat and Sophie and I are left to huddle, hunkered down in the protective shell of our suddenly peaceful home, hoping for a resolution – or maybe even a breakthrough, that will return our almond-eye son to the bosom of our family.   Pat was out of town on business when I drove Peter the 80 miles to the hospital last Friday.  When he returned, he sat with Sophie in her room, listening as she babbled nervously about the events of the past few days.  When they were finished talking, she offered, almost as an afterthought, “I feel happy Peter’s gone.  Is that bad, Dad?”  Always bold in her convictions, Sophie’s only stating what Pat and I have been afraid to admit.  It does feel better with Peter away, there’s no denying the reality of this fact.  Pat’s anger, my desolation, Sophie’s anxiety, they’ve been doused and rendered inert, like pollen after a warm Spring rain.  But there’s also an emptiness that comes with this peculiar brand of respite.  Sophie wanders the house, looking for things to do.  No matter how strained and contentious the relationship, she misses her brother and playmate.  Another time she wanders over to the neighbor’s house, fishing for fun and a little distraction, but soon returns, disappointed.  They can’t or don’t want to play with her.   Normal kid stuff, but the sting is greater, it seems, due to the present circumstances.  Suddenly she’s an only child with no point of reference.  It’s only temporary, of course, but the gulf caused by Peter’s absence, the price we pay for a brief period of “normalcy” is high.  Our son is not well, that much is apparent.  His psychiatric issues are becoming more pronounced as he grows and we are becoming less able to corral his errant thinking and irrational – even destructive and dangerous, behaviors.  The first time we left him at the hospital I sobbed uncontrollably, grief and relief washing over me in equal measure.  But this time my eyes were dry.  I knew he needed to go and there was no place for doubt in my heart.  I knew I didn’t have the tools to handle the sudden escalation of symptoms; plus, our daughter wasn’t safe.  That same night I took Sophie to the movies.  She quickly spotted some girlfriends, leaving me to sit in solitude with my thoughts.  I sat wishing, praying, even demanding that our son recover, that he improve so that he might one day live a life connected to others through love and friendship rather than the stale, predictable, one-way connections premised on need and intervention.  I want more for him.  I can’t help it.  I’ve given up the hopes and dreams, the highest of my aspirations.  And that’s okay.  They were always about me, not him, anyway.  I have to walk along his path, wherever that takes us, and promise always to steady and fortify him along the way.  It’s all I can do and so it has to be enough.  I know that I can’t heal Peter; I can’t undo the damage in his brain or erase his genetic and institutional history.  But I can continue to work toward, and look forward to, a brighter future for our son.  Part of that is admitting that I have to let go a little, that I have to let others into the sanctuary of our lives so that Peter receives the system of supports he needs in order to keep moving forward.  And right now, he needs more than Pat and I can give.  For right now, at least, the three of us need to settle on a new equilibrium, all the while hoping and praying that the therapists and doctors at the hospital are helping Peter find his own.

February 24, 2011

February 24, 2011

Peter and Pat (Birobidzhan, Russia, Oct. 2004)


February 24, 2011.  I haven’t written in a while, though I’ve started and stopped several times.  Peter’s not well right now, he’s disconnected and confused, and very, very vulnerable.  He’s getting the help he needs, and for that Pat and I are grateful.  He’s not in physical danger and his spirits, all things considered, are good.  It’s a terribly difficult time for us, and though I may one day choose to write about the intense panoply of emotions I’m experiencing, right now I need to honor my son’s dignity, bolster his courage, and attend to the needs of my husband and daughter.

For the present, and after discussions with my agent, I think I’ll return to the task of finishing the remaining book chapters.  Our current circumstances more than ever convince me of the need to get this book finished, to get this book distributed, and to hopefully allow people a window into the lives intimately and forever affected by prenatal alcohol abuse.  The older Peter gets, the more evident it becomes that his obstacles cannot be blamed predominantly on the neglect and possible abuse experienced in his Russian orphanage.  Our son’s brain has forever been altered by the devastating presence of alcohol coursing through his birth mother’s bloodstream throughout the gestational period.  And though she may have inalterably limited his cognitive, emotional and self-regulatory capacities, her reckless behavior did nothing to muffle the gentle beauty of his heart, or the genuine kindness of his soul. He is a beautiful but damaged boy who suffers the double whammy of permanent brain damage and significant early trauma.  I hope this project, if it does nothing more, raises awareness of one of the most devastating yet preventable birth defects:  Fetal Alcohol Spectrum Disorder (also called FAS).

A few weeks ago Sophie, our third grader, related a story she heard in school, about a child whose older brother is in jail because he drove drunk, caused an accident, and killed his best friend in the process.  A horrible tragedy for both families, I wondered what Sophie was thinking.  I was about to ask when she beat me to the punch.  “Mom,” she paused.  “Why isn’t Peter’s mom in jail?”  I looked at her calmly, and asked her to explain her thoughts.  “Well, she ruined Peter’s brain by drinking alcohol when she was pregnant.  I thought people who hurt other people when they are drunk have to go to jail.”

January 23, 2011

January 23, 2011

Poet's Walk (January 22, 2011)

September 23, 2011.  My second interview with the nonprofit went well enough, at least I think, but I won’t learn the outcome for another few days.  In the meantime, I have my niece Erin’s visit to look forward to, and distract me.  A junior at Boston College, she’s been my “little cabbage” from the day she was born.  In a few more weeks, she heads to Australia for a semester abroad.  A somewhat timid little girl, she now possesses the quiet self-confidence and adventurous spirit to venture halfway around the world without knowing a single soul.  We pick her up from the train station later this afternoon, a fact that has Peter spiraling toward self-destruction.  Anticipation is one of the hardest emotions with which he copes, largely, I think, due to his inability to place himself or events in time.  To Peter, a relatively casual thing like a cousin’s visit must feel how I might feel if someone told me I was going to the moon, without benefit of training or advance notice, sometime within the next one hundred and eighty days.  In other words, he’s completely freaked.  “Coming Erin today?” he asks.  I’m so glad I’m finally able to tell him, yes, today is the day.  When they were younger, Pat and I kept exciting news from both kids until the last possible moment but we can’t do that anymore, not with Sophie’s sophisticated eight-year-old eyes and ears keeping watch for things good and bad at all times.  But even though we can attribute Peter’s recent burst of unmanageability to his cousin’s visit, the sad truth is that he seems less, not more, able to cope as he gets older, stronger, and bigger.  His tantrums and outbursts are happening more frequently, and even more alarming, they’re being triggered by events so small they almost never can be anticipated.  For instance, Peter spent twenty minutes or so building a Lego racecar in the playroom late yesterday afternoon.  We’d spent a few glorious hours snow shoeing with our puppy and everyone was tired but happy.  Peter normally can’t follow the directions or sustain his attention long enough to put together something like a Lego car, but yesterday he did, and he was mighty proud.  So were the rest of us.  It’s the first time he’s accomplished something so intricate on his own.  “I wasn’t good for doing this before, Mom,” he beamed, “but now I’m ready!”  We urged him to put it on the mantel or some other safe place, to treat it like a decoration, so it wouldn’t fall apart.  But he couldn’t resist the temptation.  A few minutes later, around dinnertime, Sophie came up from the playroom shaking her head, a mixture of frustration and pity flooding her face.  “It fell apart,” she said, biting her lower lip, “and he’s not in good shape.”  Within seconds we heard him stomping up the stairs, then the door to the basement swung open and I watched, helpless, as he burst into tears and undecipherable raging that deteriorated into his throwing his dirty diaper around and Pat having to put him in his room.  By the time he was in control enough to come down for dinner, we learned that only a single piece of the car fell off and all he would have had to do was snap it back into place.  But the disappointment, the frustration, the flood of emotions he experiences over the most trivial problem, were more than he could handle.  And because this is happening more and more frequently, often several times a day, his issues once again are holding us hostage.  In fact, after significant nudging from our family therapist, we’ve allowed a crisis team into our home, to help us sort out what can be changed and what can’t, and to help us plan for our family’s future, its safety and well-being.  The first night the two crisis intervention women came to our home, I found myself bragging somewhat about how much progress we’d made with our son, at least in terms of attachment, trust, and bonding.  But then Peter being Peter, he did the unexpected when one of the women asked him a series of questions, 95% of which he wasn’t processing.  But when she pared her words down, and asked a single pertinent question, he had his answer ready.  “If you could have one wish,” she asked, “what would it be?”  Without pause, and certainly without apology, he looked Pat and I squarely in the eyes and said “to not have a mom and dad.”

January 7, 2011

January 7, 2011

An artist's eye (Dec. 2010)

January 7, 2011.  The snow outside the kitchen window falls like sprinkled baby powder, the whispery flakes fine and silent as they drift, almost apologetically, toward the ground.  Sophie and Peter are outside playing, even though it’s eight thirty in the morning, because both schools cancelled in anticipation of a storm that appears to have lost purchase.  I have so much to do today, including finishing up my syllabus for my Environmental Law class, but I hope to carve out a few hours for the children.  It’s not been a barrel of fun around here lately, and I’d like to make some progress toward turning the situation around.  The holidays have always been rough on Peter, for the usual reasons of lack of routine and schedule, but there’s something else going on too, though I can’t quite name it.  It may have to do with his medication, or maybe it’s just the fact that he’s growing and his episodes and distorted thinking are increasing right along with his physical measurements.  Regardless, it seems like every little change or provocation sets him off at a level higher, and with more frequency, than we’ve previously experienced.  Plus, the issue of his increased urine output, coupled with his occasional inclination to weaponize his pee, has me ready to scream “surrender!”.  Diaper, rubber pants, maximum doses of DDAVP, and no liquids after 6 pm have done little to curb the problem.  Though the DDAVP gave me a few weeks reprieve from washing his sheets every day, the drug no longer seems to be working.  What appears imminent, and his psychiatrist is speaking with a nephrologist today, is that we’re going to have to take him off the Lithium, which is messing with his thyroid and kidneys.  After two years on the “miracle drug” that cleared and soothed his tortured mind, Peter’s body has begun screaming in revolt.  The very thought of doing this terrifies me.  He’s not even doing well right now and I shiver to think what will happen when and if we remove the most powerful weapon in his pharmaceutical arsenal.  It’s times like this that take me to the brink of my strength, my reserves, and whatever sense of hope to which I still stubbornly cling.  Peter’s favorite phrases right now are “I won’t do it” and “You are a damn pipsqueak.”  The latter would be funny except for the venom spitting from his mouth.  And while we’re on it, Sophie’s been less than charming too.  Last night Pat took over the nighttime routine because he knew I hit my limit.  Most days I can handle Peter, but when Sophie starts spiraling at the same time, when her attachment issues flair and her anxiety symptoms skyrocket, I have a hard time coping.  This isn’t fair to her, of course.  She shouldn’t have to time her setbacks so they occur opposite of Peter’s.  But she’s been lying like a seasoned veteran, over things large and small, bringing home one poor grade after the other because she doesn’t feel anyone should tell her what to do (as in take a test), and she’s even begun abusing our animals again.  How do I put out Peter’s fires all day long when Sophie is running behind, resetting them?  It’s too much sometimes, it really is.  Sophie is the child we believed was all right, the one we thought we could truly heal; a little girl whose crooked smile and mischievous eyes hold so much light and promise.  But she is scarred too, maybe not physically, like Peter, but psychologically and emotionally.  They are both unhappy children right now, I know that, and Pat and I are unhappy parents.  But when I try to change the tone or steer us back in masse toward a more positive approach, one or both of them seem to purposely ambush the effort.  I either catch one of them at something – like Peter taking apart the electrical outlets the other day, or they fall apart and start beating on each other the second I turn my back.  It’s such a peaceful day outside, the light, steady snow blanketing the house and yard like a favorite worn quilt, and it saddens me to think that my parenting journey, the choices I’ve made and the paths I’ve taken, have lead to such a tumultuous, and at times hostile, environment inside the four corners of our home.  I love my children, both of them, for vastly different reasons and in countless different ways.  But they’re also robbing me of the best years of my life.  It’s so hard, sometimes, to see beyond the blizzard of problems, doctors’ appointments, teacher conferences, placement battles, or therapists, and think back to why and how we wound up here in the first place.  All I wanted was a family, a chance to mother children who desperately needed mothering.  It seemed a simple concept, but it’s not.  I can’t imagine anything else occurring in my lifetime that will offer a greater personal challenge than raising our two children, one impossibly damaged in utero by alcohol and the other wounded, maybe permanently, by the rigors of life itself.  What’s clear is that I’m not meeting that challenge right now, and am therefore failing our kids.  I have to get myself back on track, to a mindset where their problems and behaviors don’t feel like a personal affront, where I can make hot cocoa for Peter and Sophie and play board games and try to maneuver my feelings and thinking so that they align more naturally with the soundless beauty and tranquility that our snow day has so selflessly offered.

December 22, 2010

December 22, 2010

Waiting to See Santa (Macy's, NYC, Dec. 2010)

December 22, 2010.   The other night, while listening to the cold, slanting rain pelt against our house, I realized something extraordinary.  Sophie is beginning to keep us honest, and maybe even more noteworthy, participate in her brother’s care.  Peter was having yet another one of his becoming-too-frequent screaming fits – this time over having not earned enough points on his chart to play video games, so I looked at him, not so calmly, and suggested that he scream louder, which he did.  His face crimson and his mouth stretched wide, he let fly a primal howl loud enough to be heard from the moon.  And then he did it again and then again.  When the fit finally abated, and he went upstairs to change into his pajamas, Sophie turned to me, hands on hips, her face a little flushed, and asked, “Why’d you do that, Mom?”  Hesitating, I finally stuttered, “Sometimes its good to get the anger out.  I was trying to help.”  One look at my savvy daughter told me she wasn’t buying it.  “Well,” she huffed, “will you please not do that again?”  Accepting my reprimand with as much grace and aplomb as I could muster, which wasn’t much, I hastily agreed.  Pat’s tiny grin did not go unnoticed.  He knew as well as Sophie that I was wrong to have done that, and perhaps even more wrong to try to cover my tracks in front of our precocious daughter.  One thing I love about Pat, and I hope he’d say the same for me, is that he tries hard not to over condemn my slip-ups when it comes to coping with and teaching our children.   We often talk about each other’s mistakes later, usually while we’re watching TV at night, but we’ve taken a solemn vow of solidarity when it comes to our respective parenting slips.  I think it comes from a place of deep respect and love, and the knowledge that our relationship and commitment to each other is more important than anything else we’re doing, including raising our kids.  I’m not sure we’d have been able to stand the pressure cooker that our lives have become otherwise.  Case in point: our recent day trip into the city to see the Nutcracker.  We arrived early enough to see Santa at Macy’s beforehand and devour too much pastrami at Carnegie Deli.  Despite his recent volatility, Peter handled the day’s excitement pretty well, at least until the ballet.  Unfortunately, he felt the need to spray the walls of the Lincoln Center’s Men’s Room with urine and then offer an encore performance during intermission right in front of his seat.  A twice unlucky porter spread cat litter on the floor to sop up the mess, which I must say was embarrassing, and poor Pat had to get Peter cleaned up, for the second time in an hour.  At 9 ½, he’s really too old to take into the Ladies Room.  I thought Pat’s aorta would burst, he was that mad.  His body shaking with frustration, I watched nervously as he hauled our soaked son into the restroom.  As for me, I was more embarrassed than angry, and so I dug through our backpack in search of the “You have just experienced a child with autism . . .” cards that Lindy gave me for just such an emergency.  I swear I could feel the humiliating stares and angry eyes all around me but as it turns out, it was just my own paranoia at play.  The people around us were incredibly tolerant and understanding, as were the porter and ushers.  I don’t know whether Pat is hiding pints of whiskey in his trousers these days (I certainly wouldn’t blame him), but he emerged from the Men’s Room in relatively good shape, his anger dissipated and his temper in check.  Our eyes met briefly as we negotiated stepping over the piles of cat litter, and that’s all that was necessary to communicate that we were both okay, that this particular disaster was survivable.  Despite Peter’s behavior, born I suppose from over-stimulation and fatigue, we were able to rally as a family and enjoy the rest of the performance.  Amazing.  We’ve actually gotten to the point where our son can paint one of the most magnificent performance venues in the world with urine and still proceed with our plans.  Now all I have to decide is whether this fact represents personal triumph over extreme adversity or the inevitable decline of our already dwindling rationalities!  When the ballet ended, Sophie exclaimed that the worst thing in the world was that now she would have to wait 365 days to see it again.  She is a lesson in resiliency, our daughter, and my eyes filled with tears to watch the awe and joy in hers.  A few years ago, an episode like this would have ruined the day, but we’re learning, Pat and I, from each other and increasingly, from Sophie.  We are so careful with each other, not always 100% successfully, but we try.  Knowing that we have each other’s back, as well as appreciating that we’re the sacred guardian of each other’s heart, keeps us moving forward as individuals, as a couple, and ultimately as a family.  At 62, my husband finds himself in the middle of a situation from which most men would run, and yet he doesn’t.  He allows me to talk him down from the ledge when he’s at his breaking point and somehow, always, he comforts me when I’m at mine.  Sophie suffers from tremendous anxiety and control issues but at her core, she’s a consummate survivor.  I have to believe that the very qualities that allowed her to endure, and sometimes even thrive, in the orphanage, the ones that too often cause her trouble in school and at home, can and will be massaged toward more healthful pursuits.  Just like she reminds me when I allow Peter to influence my behavior, I need to gently help her learn to control her impulses, her survival drive, so that these traits don’t wind up controlling her.  I think we’ll get there, I really do.  It takes real pluckiness to be able to lift your legs up so a porter can spread cat litter beneath your seat while pouring through the Playbill, completely unphased, in anticipation of Act II.  Anyone who can survive what Sophie survived, and who endures what she must endure on a daily basis, will find her way in the world.  After all, she’s already taught us a trick or two.


December 12, 2010

December 12, 2010

Peter & Sophie in their Russian Christmas outfits (Blowing Rock, NC, Nov. 2010)

December 12, 2010.  Nothing I’ve done to squelch the flow or urine at night, whether purposeful on Peter’s part or involuntary, has worked.  I literally have zero idea how he’s outmaneuvering us, but I’m nonetheless giving in and raising the white flag in surrender.  At this point, I have no idea how we’ll cope with the next ten years or so of nightly bed and pajama soaking; I only pray the output doesn’t rise to the level that it overflows the mattress, leaks onto the floor and eventually splatters the living room below.  If that happens, my contingency plan is to design and install a self-cleaning waterproof bubble in which he can sleep, thereby allowing the four of us to continue cohabitating without the threat of ammonia asphyxiation.  In the meantime, I need to turn my attention to Christmas and more pleasant preoccupations.  We’re scheduled to go into the city on Tuesday to see the Nutcracker and visit Santa at Macy’s.  I made the reservations six weeks ago, before Peter’s breakdown.  His behavior, meaning his self-control and frustration tolerance, are still well below what we consider his “norm”, and his grip on reality, though not slipping any further, is nowhere near where it was before this happened.  I hope he can endure the day’s events, and accompanying excitement, so that all of us, Peter included, can enjoy the experience.  Though it’s my most recent, and fervent, Christmas wish, I must admit I’m a little apprehensive.  On the way home from Sophie’s swim meet today, Peter asked why I didn’t just jump over all the icy puddles in the road when he heard that my car had slipped earlier that morning.  “We’re Rudolph now, Mom.  You can fly!”.  Lindy gave us a Rudolph car kit for Christmas last year and though I dutifully installed the antlers on the front windows and red nose on the grill, we lost an antler the very first day.  All that’s left to adorn our vehicle is the big, red nose on the front.  “Really, Mom,” he persists after listening to me explain how tying a red-stuffed nose onto the front of the car doesn’t transform us into Rudolph. “We magic powers now.”  At this juncture, I don’t dare argue with him or even try to restate my point – he’s been very combative lately when someone challenges his fanciful ideas, and so I let the matter slide and signal Sophie to do the same.  She gets the message and stops trying to convince him of the folly of his thinking, but she resents the request and makes sure I’m looking as she roll her eyes and proffers an ominous, low growl.  To de-escalate the mounting tension, I turn on the radio, hoping for a Christmas tune.  Instead, Peter’s nemesis of a song is playing, and I find myself laughing over the sheer absurdity of what was about to unfold. “Mom,” he pipe’s up, exactly on cue. “That is not a nice song you are hearing.”  He’s talking about “I Shot the Sheriff” by Eric Clapton.  “I can see why you’d say that,” I respond, having heard this lament at least a hundred times before.  My favorite radio station plays this song often.  I’m seriously considering calling the manager and asking them to delete it from their playlist. “The sheriff would not like that,” he continues.  “Oh come on,” Sophie bellows, unable to tolerate an iota more of this Who’s on First routine.  “It’s not a REAL sheriff, Peter!  It’s just a S-O-N-G, get it?”  Despite her obnoxious tone, I can’t get mad at her.  It bugs me, too.  As in R-E-A-L-L-Y bugs me, but he can’t help it.  He’s completely black and white right now – even more than usual, and as inflexible as a flagpole in his thinking.   The other day he orchestrated the perfect storm in the playroom, throwing toys, furniture and other objects against the walls and across the room, all because Lindy wanted him to acknowledge that it doesn’t always snow at Christmastimes but every now and then it snows over the Thanksgiving holidays.  This threw a wrench in his rigid construct regarding the seasons – “the leaves fall down at Thanksgiving, the snow comes at Christmas”, and that’s all it took.  Lindy said she was about to “take him down” in one of her last resort restraints because Sophie was on the verge of getting hurt, but somehow this was avoided.  Though licensed and certified to restrain a child who is in danger of harming self or others, Lindy’s as wary as we are of CPS after the school psychologist fabricated abuse charges back in the “Pre-Due Process Victory Era”.  Despite Peter’s significant setbacks however, I’m still returning to good cheer, and I want to count my blessings.   Peter was an angel today – a polite, model citizen during Sophie’s swim meet, and he kept himself nicely together for the rest of the afternoon, until dinnertime, when he fell apart again.  It’s the best day we’ve had with him since early November.  Pat’s upstairs, showering Peter, and Sophie’s dropping chocolate chip cookies on a cookie sheet.  She’s handed her baby doll over to me to “babysit” as she works, and I can’t help but grin as I listen to her belt “Deck the house with balls of Howie”, more or less in time with the CD playing in the background.  I’ll stop writing now because she needs me to put the cookies in the oven and we have a family date to watch A Charlie Brown Christmas in front of the fireplace together.   I’ve always had a soft spot for Charlie Brown.  Maybe because he was meant to remind me, even when I was a child, of the son I’d one day have.  After all, except for the not so small matter of fetal alcohol, those two boys have a lot in common.


December 3, 2010

December 3, 2010

Peter and his cousin Ethan, 4 (Blowing Rock, NC, Thanksgiving 2010)

December 3, 2010.  I’ve chosen not to write lately because I don’t know how or whether to put into words the events of the last few weeks.  The good news is that our lives are back to normal again, at least relatively.  The bad news is that Pat and I, and perhaps even the kids, glimpsed a reality regarding Peter’s future that we had never allowed ourselves to consider before.  To put it bluntly, Peter fell off the sanity wagon for a few days, without warning, precursor, or any other obvious explanation.  It was the scariest experience of my life, and it’s left me a little shell-shocked.  I don’t want to rehash the details, the particulars of those few days that are now branded into the consciousness of our lives, and so I won’t.  But I will describe some of how the incident has left me feeling.  Suffice it to say there was a break, a sudden, catapulting crack in the fragile chemical balance that is our son’s brain, his personality, his heart, his very identity.  Fortunately, it lasted only a few days because with the help of some pharmaceutical intervention, bam!  He was back.  A little dazed, a little more confused, but he was with us.  All of this happened the week before Thanksgiving, a time when I’m usually preparing for our annual 12-hour road trip to Blowing Rock, NC, where my family gathers for the holiday.  We weren’t sure we’d be able to go, because stabilizing Peter, and keeping him stable, was our main priority, but his recovery was faster than his descent, which is remarkable.  We aren’t quite clear about what happened – and we’re still waiting on some test results, but his psychiatrist thinks he experienced a manic episode.  I know my siblings were worried about our coming for Thanksgiving, for Peter, and for themselves.  The news that his psychiatrist cleared him for the trip – she actually thought it would be restorative for us to proceed as originally planned, was received ambivalently.  It seems that no one, not even my family, wants to insert his or herself into the maelstrom of a mental health crisis.  “What if something happens?  We want to see you, you know that, but are you sure he’s okay now?”  I deflected these and other concerns, raised over the telephone lines, with as much grace and confidence as I could manage, all the while holding my breath when it was my turn to listen so that my agitation, the hurt and growing sadness, would remain concealed.  How lonely I felt in those awkward moments as I clung to the promise and hope of family reunion while all the while defusing the doubt, maybe even dread, I was hearing on the other line.  Lately I’ve been feeling like I’m in a rowboat, drifting steadily toward the open ocean, without benefit of rudder or oar, helpless to do anything but watch the throngs of happy, oblivious beachgoers as they inevitably fade from view.  I used to be one of those carefree beachgoers, with nothing more to tow, on any given day, than the normal dose of angst and anxiety, but now I have to wrestle my way toward every lighthearted moment and orchestrate, even carefully construct, our family’s every move.  Peter’s problems, and Sophie’s too, have a way of pulling Pat and me, slowly but surely, ever further from the comfort and easy companionship of friends and family.  Our daily lives, aside from attempting to stay solvent, are filled with doctor’s appointments, therapists, psychologists, special education, strict routine, and therapeutic parenting.  While in North Carolina, I caught up on all the comings and goings of my many nieces and nephews, all of whom I cherish.  One is heading to Australia for a college semester abroad, another just got her driver’s license, and a third grew a foot since I saw him last March.  Their lives, as well as all the others, are proceeding more or less according to plan, and with great expectations for their very bright futures.  My children’s lives are proceeding too, with accomplishments that dwarf by comparison even their most accomplished cousins, but their achievements aren’t as obvious, and Pat and I have had to move mountains, always, to further even the smallest progression.  And its taken a toll, a fact never so obvious as when I’m with my siblings, who are immersed in the important and blissfully ordinary business of making sure their kids get into a good college, have nice friends, are well-traveled, and learn to navigate different kinds of social and professional circles.  Theirs is the world in which I grew up, but it’s not the world our children will occupy, nor is it a life to which I’ll ever return, and therein lies the rub.  I don’t know what our children’s futures hold – I don’t allow myself to envision an outcome beyond self-sufficiency, intact self-esteem, and the capacity to give and accept love.  Sophie is an amazing child whose talents could take her to heights she’s not yet imagined but whose skeletons may rattle her confidence and cloud her way.  Peter has a beautiful heart but a damaged brain, and he’s more vulnerable, I realize, than I ever allowed myself to believe.  I hope and pray he never loses his capacity for love; beyond that, his future is too uncertain to speculate.  Maybe the uncertainty is what drives my present melancholy, that and the growing feeling of loneliness that continues to gnaw at me.  I miss my family so much, especially my parents, now long dead, and yet I worry that there may be more than just geographical distance coming between my siblings and me.  Our lives have become so different that I wonder whether we are losing the glue that is our commonality.  Pat knows I’m struggling with this, the unacknowledged gulf that’s growing like a patient tumor due to our difficult circumstances and the isolation which it breeds, and night after night he holds me tight to let me know that he’s there, and that he always will be.  He is single-handedly nurturing my sanity these days and I cherish him for it.  He appreciates as well as I that my siblings can no more understand, for instance, the extent of the trauma we’ve endured with the school district, or why we lack the money to pay our income taxes, than I can presently fathom the freedom that their lifestyles afford.  Despite the fact that my siblings (and a few of their spouses) are high-income lawyers, no one has ever truly offered to help – monetarily or otherwise, with any of our various legal battles, crises, or just the every day challenges of raising two special needs children.  The entire week we were in North Carolina, no one even offered to watch Sophie and Peter one night so Pat and I might take two hours to ourselves and see a movie, something they know we very rarely get to do.  It’s not a message they mean to send, I’m sure of that, but nonetheless, it seems obvious that we’re alone on this journey, the four of us, and absent a catastrophic event, they won’t be assuming a more proactive role.  On the heels of Peter’s’ breakdown, I craved more than ever the companionship of my siblings.  I guess I thought they might hold me, help us plot a roadmap, or ask what they could do to help.  Something, anything, to alleviate the fear and desperation that has taken root inside me.  I was homesick in a way I haven’t felt in years.  But in North Carolina this past week, in the summer home of my childhood, where I always felt safe and supported, I was genuinely lonely.  It’s not their fault, they’ve done nothing wrong.  In truth, and maybe in part because I’m the youngest, I worship, adore, and admire each of them more than they will ever fully appreciate.   I’m just seeing reality a little more clearly these days.  As we prepared to head back home, I had the strange sensation of looking into the window of normal life, my siblings’ lives, and catching only a flickering glimpse of memories formed long ago, back when I naively believed a true heart and sound mind were the only ingredients necessary for building a fulfilling life. Though the camaraderie of shared experiences and common interests – as well as the comfort it offers, permeated the air around me, what I so yearned to grab hold of this Thanksgiving seemed impossibly past my reach, and eons beyond my current circumstances.  Our son’s challenges are not only a cross I have to bear, they’re fixtures in my life with which I clearly still need to come to terms.  I’ve made a lot of progress, but there’s more to go.  My post-Peter life will never again resemble my former life, but its rich in love and purpose all the same.  I have to remember that, and work on new ways of embracing what we have rather than dwell on what we’ve lost, or what will never be.

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.

October 28, 2010

October 28, 2010

Scout, Peter and Sophie (Spring 2005)

October 28, 2010.  Tomorrow we’re putting our nearly 16-year-old Jack Russell Terrier to sleep, at 11:00 am to be precise.  We’ve already changed our minds numerous times and even cancelled one scheduled appointment.  But we can’t put it off any longer, there’s no denying what has to be done and I need to believe that this will be in fact the last act of love we’ll ever give her.  I remember picking Scout out of a litter of 9 as vividly as if it was yesterday.  The man selling the pups sized me up in about 30 seconds and warned that Jack Russells don’t make good lap dogs.  I smiled politely, thanked him for the information, and went about deciding on the puppy I intended to name Scout, the one with the diamond marking on her forehead.  Having buried my father only three weeks earlier, Scout has been a tremendous comfort and loyal companion from the start, and this despite all her typical Jack Russell characteristics.  Although weighing only 13 ounces, she nonetheless had the gumption, at just 8 weeks of age, to growl at me the first time I took her food away.  Even so, only a few days of convincing were needed to transform her into a snuggly, if tenacious, lap dog.  The first time Pat flew from NYC to visit me in Atlanta, when we were just beginning to see each other, he walked in my home, immediately reaching to pick up Scout before I had a chance to warn him that she can be nippy with strangers.  I had visions of his hands being sewn up in the Emergency Room and our fledgling relationship ending before it really ever began.  But she surprised me.  Or maybe it was Pat who did the surprising.  At any rate, they became fast and furious friends, meaning tomorrow’s appointment will be as hard on him as it will be for me.  She’s been every bit his dog too for the last dozen years.  As for the children, we’ve decided to lie, and I hope it’s the right decision.  Sophie especially was traumatized after being graphically exposed to the process of euthanasia by watching Marley and Me, a PG-rated movie whose advertising as a “family holiday” film still infuriates me.  Neither of us feels she’s of the mindset to handle being told we put Scout to sleep.  When they get home from school tomorrow, Sophie and Peter will be told she died at home, peacefully.  We began preparing them weeks ago for the inevitable and I hope they handle the news.  Of course, having Lulu, our new puppy, will help.  As I sit here contemplating the most difficult task of dog ownership, I can’t help reflect on how effortless my relationships with animals, especially dogs, always has been.  I seem to earn their trust and affection almost instantly, a feat I’ve not quite achieved with our two Russian-born children.  I know they aren’t comparable, children and dogs, but still, this journey with our kids has shaken the belief I had, and relied upon, regarding my ability to reach and keep the hearts of those I love.  I’ve earned Peter’s love and trust, something for which I’m immensely grateful, but it took five years and enough sweat and tears to fill a lake.  Only recently have Pat and I realized we’ve been fooling ourselves regarding both the solidity and nature of Sophie’s attachment to us.  This child I love more deeply than I imagined possible, it turns out, has very complex and troubled feelings toward us and the very concept of family, what it means, and requires, to be part of a family.  In the midst of Peter’s endless tornado, I allowed myself the fiction of believing that Sophie was secure, that she was ours and we were hers, in the most usual and heavenly ways.  But it wasn’t entirely true.  She was playing a part, acting a role, and now that Peter has emerged substantially from the storm of his early trauma, she’s adrift and unmoored, unsure of her place in the family and rejecting the fundamental tenet that parents’ love for their children is not an either/or proposition.  She’s angry, seething, boiling mad.  I have to find a way to reach her, show her that I love her as completely as I always have even though in her eyes, I now love Peter in the same “outward” way.  Despite our efforts to talk these issues through, she is young, and emotionally much younger than her age, and to her, our tough love approach with Peter seemed, I think, like the absence of love.  Also, for years, Peter wouldn’t allow us to hug, kiss, or snuggle him.  But now that we no longer feel like sandpaper against his skin, I take full advantage whenever the opportunities arise to make up for all the intimacy he missed, and of course, deserved.  But Sophie doesn’t see it this way.  To her it’s a threat, that much is clear.  What’s not clear is how we address it, how we help her heal wounds that have been festering, it turns out, like a bubbling low grade infection the entire time Peter’s more urgent injuries were being triaged.  But we must, and we will.  In many ways it’s going to be harder than what we went through with Peter.  As Pat sagely pointed out, Peter’s thought processes are simple, his trauma finding purchase in the way his brain and body reacted to demands and stimuli.  We had to break these patterns, to be gruff about it, much the same way one goes about breaking a horse.  But Sophie’s mind is complex, terribly complex.  Her injuries are emotional and psychological and because in large part we missed them, or more aptly, were unwilling to see them, they’ve been brewing and multiplying for years within the interior of a very capable, clever brain.  There’s no doubt Sophie is the Jack Russell of our family, or as Pat likes to say, the Jack Velociraptor.  As I prepare to say goodbye to my oldest and best canine friend, I hope and pray I have the strength to convince my daughter of the completeness and unassailability of my love for and devotion to her.  To be honest, not many people love Scout.  She’s bitchy and ornery and generally ill-tempered.  But I love her and so does Pat.  I hope tomorrow that our old girl senses we’re there to help her and that she accepts our love this one last time.  It’s all I want for our daughter, too.  That she be able, in the privacy of her own thoughts, to acknowledge that we love her, no matter what, for who she is and who she’s not, for what she’s done or might never do, because we are her parents and we love her, forever, without condition, judgment, or pretense.

October 6, 2010

October 6, 2010

Scout Swimming Next to our Canoe (Summer 2003)

October 6, 2010.  Two days ago I received an email from the school district’s attorney, with a copy of the Hearing Officer’s decision attached.  We won.  Across the board, on all counts, and on all points.  Even though we shouldn’t need the outside verification, its rather satisfying to read, all the same, that we aren’t nuts, or crazed parents, or unrealistically looking to our public school to provide Peter with a designer, top-of-the-line, private school caliber program.  We were looking for the district to adhere to the requirements of state and federal law, and to respect our rights under the same, as parents.  I can’t say the last three years of sparring with the school have been worth it, the manufactured abuse charges, the lies and cover-ups, the damage to our son’s fragile mind and bewildered heart, as well as the substantial collateral damage to our daughter, which we’re only now beginning fully to realize, but winning certainly helps.  Regardless of whether the school district appeals, for us, its over.  The day after tomorrow, Peter will start his new school, a program that will provide him one on one learning and life skills training within an intensive, neurocognitive rehabilitative framework.  It’s a day that’s long overdue, but hopefully not too late.  Lindy asked him yesterday whether he was excited about starting the new school. “I don’t want to go,” he replied.  The next part is what made me heart skip and my eyes well.  When she asks why not, his response was simple and matter-of-fact.  “Cuz I want to stay home with Mommy.”  Wow!  How very far we’ve come, the two of us.  Last night I looked back through my journal and reread some of the entries I wrote just a little over two years ago.  Though I haven’t forgotten the all-encompassing sense of hopelessness, rage, and absolute chaos that daily life with Peter entailed, those worries no longer hold me captive.  Never could I have imagined then that our son could ever feel, much less absorb, the love for him that I’ve fought so hard to first find and then instill.  My words feel awkward today, I know, but I think its because my heart’s so full.  Peter’s courage, his vivacity and plucky determination, have touched so many lives, and of course, transformed my own. Yesterday I received a call from a woman who lives about an hour south of us.  She raises golden retrievers, has an autistic child, and has been following our story.  Her dogs, which sell for about $1200, are bred specifically with mellow temperament and family companionship in mind.  This complete stranger, out of the goodness of her heart, wants to give Peter one of her female pups.  To top it off, the call came on the same day that I spoke to our vet about whether the time has come to say goodbye to our crotchety but cherished Jack Russell Terrier, Scout.  At 15 ½, she’s deaf, incontinent, uncomfortable, and very disoriented.  Her quality of life is diminishing quickly and I worry that we may be keeping her alive for selfish reasons.  I don’t know when we’re going to bring her in – though it’ll likely be soon, and its something Pat and I are dreading.  I also don’t know whether we’ll be able to bring the new pup into our home, despite how eerily fated, and connected, this chain of events feels.  For me, the love and companionship that our pets provide outweighs, several times over, the undeniable labor involved.  I’m a true animal lover, and though it may sound silly, or perhaps even juvenile, the very presence of our pets shores me up, helps me feel less homesick when those moments come, less alone, more needed, and yes, more unconditionally loved.  But I don’t think Pat feels the same, and I can’t much fault him.  We have so much on our plates, and for him a puppy means work (which it is), added stress, and everything else that goes with the territory.  But still, even if we end up declining this incredibly generous, almost fortuitous offer, I’m grateful beyond description.  The fact that Peter, and his story, have touched so many lives gives me hope, real hope, that we’ll be able to heal the hurt that’s been hidden so deep inside Sophie, a hurt that’s only now beginning to surface, and one we only barely understand.  Our cherished little girl has the tenacity, stubbornness, and the agile mind of a Jack Russell Terrier.  In fact, Pat and I often joke that she and Scout must be biologically related.  She has all the right stuff, and so I have to believe in my heart that she can overcome these troubles.  As I quietly relish our victory over the school, all the while preparing for Scout’s farewell, Peter’s new school experience, and Sophie’s worrisome struggles, I reflect on how far we’ve come, as individuals and as a family.  I hope love continues to blossom in our home, despite setbacks and emerging issues, or the inevitable loss, now and then, of one of our much-loved furry friends.

 

September 28, 2010

September 28, 2010

Sophie's 3rd birthday (July 2005)

September 28, 2010.  Peter keeps asking why my face and eyes are red and I do my best to convince him that I’m having an allergy attack.  He and I are closer than ever now that he’s been home from school on doctor’s orders – at least for the next few days, and he’s very attuned to my feelings.  I hope he forgives the small lie.  The decision regarding our Due Process Hearing is expected September 30, two days from now, but I can’t presently afford to dwell on the possible outcomes.  Every fiber of my being is churning with despair over the latest news we’ve received from Dr. Federici, and this time Peter was not the focus.  Yes, it’s true.  We took Sophie to see him, too, a few weeks ago, because her behavior, as well as her school performance, has been gnawing at us like a festering wound.  The results of his testing are not good.  Our precious little girl – who is bright and capable in so many ways, is battling her own set of demons, psychological debris that is robbing her of the right to experience properly the simple beauty and gift of childhood.  What’s clear from neuropsychological testing is that she suffered significant trauma, though we’ll never know the forms it took, during the first 2.3 years of her life, prior to the adoption.  What’s also unavoidably clear is that the level of family stress and turmoil that she’s experienced in our home, byproducts of our efforts to redeem Peter’s heart, soul, and mind, has exacerbated the problem beyond our wildest prediction.  Our quest to reach the most obviously affected child – in our case, the one who screamed and kicked the loudest, has been more than Sophie’s fragile ego could handle.  According to Dr. Federici, she is lost, unanchored, severely depressed, melancholic, dissociative, unhappy, without empathy, and consumed with thoughts of death and dying.  A walking anxiety attack with blonde hair, brown eyes and a trumped-up bravado that belies her profound insecurities, our daughter is not the picture of psychological health.  What happened to our mischievous, precocious, funny, engaging, and emotionally connected little girl that we so often brag about?  I feel like Pat and I have been deluding ourselves into thinking she was healthy, maybe because we’ve been so overwhelmed with Peter’s crises that we had no capacity to think otherwise.  God, I could kick myself.  How could we have messed this up so profoundly?  I love Sophie with absolutely every fiber of my person.  She is an amazing child with more spunk than any one person by right should have.  When I daydream about pregnancy and birth, Sophie and Peter are the newborns I imagine delivering and cradling in my arms.  Always.  So why does it have to be so hard?  Why isn’t love enough?  I’ve had to claw and scratch to get Peter the help he needs, and still my efforts fall short.  And he has brain damage.  Measurable, quantifiable, undeniable brain damage.  I never imagined it’d be such an uphill, at times acrimonious, battle to address such unambiguous needs.  Sophie’s issues, on the other hand, are emotional and undoubtedly much more difficult to trace or treat.  It’s also a good bet we caused a fair percentage of them.  I recall those early years, when Peter would scream for hours, biting me, spitting on me, saying I smelled as he ripped wallpaper or ran his nails across leather furniture.  The days when he used to vomit at the dinner table or pull his pants down and pee on the floor on the rare occasion we had company.  Our reactions – my reactions, weren’t always textbook, they weren’t always calm, and hardly ever did they qualify for an outstanding parenting award.  Pat too has been less than perfect throughout this journey.  Already a grandfather at 62, and having suffered the deaths of his two biological sons, his stamina and optimism could use replenishing.  Sophie is a beloved it not easy child, and it seems she’s suffered the consequences of our fallibilities.  Her fragile sense of self, and the extreme insecurity caused by her uncertain but dark past deserved a Leave it to Beaver fresh start.  But we weren’t able to deliver that.  We’re not June and Ward material, and Peter in no way resembles Wally, the even-tempered big brother of the 1950s.  We’re two people who love each other and our children, who mess up all the time, lose our tempers, as well as our senses of humor and perspective, and then do our best to pick up the pieces and resume our forward quest and our commitments to each other.  I hope we have what it takes to reach her, to help our daughter heal as we’ve done with Peter.  She deserves so much, they both do.  I worry that I’m losing myself in the process, though.  I have so little that’s my own in terms of accomplishment or things for which to look forward.  I’ve given up my career, I’ve moved away from family and my closest, oldest friends, and we’ve largely become pariahs in our town because we’ve called into question the integrity and judgment of the local – and only, public school district.  This would all be okay, or at least more tolerable, if what we were doing was building our children’s characters, healing their hearts and improving their minds.  But now I’m not so sure.  Sophie, I now realize, is not secure in our home despite what I know in my heart has been my very best effort.  I guess my latest challenge, one from which I hope to gain a renewed sense of purpose, is to find that extra something inside myself so that I can improve the way I parent, and in doing so, help heal my child.  I have to admit, I never dreamed parenting would be this difficult.  I also never appreciated, despite voracious reading on the topic, how much damage a couple years in a Russian orphanage can exact on an innocent child.  What a lousy, lousy day it’s been.  As I reflect on this dreary, rainy day, a day filled with self-doubt and accusation, I recall how we finished watching Annie, as a family, just last night.  When I was eleven, I had no greater aspiration than to one day play the leading role on stage.  I begged my mother to buy me a red wig and drive me around to regional auditions in her station wagon.  Though I never realized that goal, I still cling tightly to the belief in dreams.  And so as I say goodnight to our children, both troubled, significantly, in their own ways, I kiss them and hug them tight.  I turn off their lights, one by one, and tell myself, with barely held back tears, that I do so hope the sun will come out tomorrow.

September 22, 2010

September 21, 2010

Go Gators! (Sept. 2005)

September 21, 2010.  “Annie’s not real?” Peter asks.  I don’t quite know how to explain, my previous 1,000 attempts haven’t done the job.  “No Honey, she’s acting.  It’s pretend.  Like when Sophie was in her play over the summer.  She was pretending, right?”  We watched the first part of Annie last night and Miss Flanagan’s rendition of “Little Girls” gave Peter nightmares.  “So Annie’s a robot?” he continues, undeterred.  The inflexibility of his thinking frustrates me and I struggle to remain patient as I think of ways to help him understand.  Peter at 9 still is unclear about the distinction between fantasy and reality, fiction and fact, film versus life.  If someone on TV, or even on stage, is a real, live human being, rather than a cartoon character or puppet, he stolidly clings to his belief that they are “real”, and therefore in many instances, an immediate trigger for his countless fears.  Carol Burnett’s rendition of Miss Flanagan might have hit too close to home for Peter’s fragile sensibilities to assimilate.  We don’t really know what our children consciously remember of orphanage life, if anything, but the preverbal memories are undoubtedly there, lurking in the corners, ready to spring at the slightest provocation.  Peter later tells me, on the way to the public library, that he wants to watch the rest of the movie tonight, if there’s time, and that he’s not afraid anymore.  “Why not?” I ask.  “Because that bad lady only gets mean to girls,” he answers.  It’s a valid point and I tell him so.  “Plus,” he adds, looking at me over the top of his glasses like a mini-version of his father, “she don’t talk Russian.”  That’s when I realize I’m not reading too much into our son’s distress.  He really did make the connection between his past and the movie.  Despite Annie being my favorite Broadway show when I was eleven, perhaps it isn’t the best choice for our family right now.  On the way home I distract him with chit-chat about which of his newly borrowed books we’re going to read first.  He’s dead set on reading a Magic Tree House book that’s well beyond his ability so we agree to read it out loud, together.  I don’t hold much hope for making it through the book – Peter’s not one to read (or listen) to a chapter or two a night and then continue the next day where he left off, but we’ll give it a try nonetheless.  Pat’s in the city today and I want to make sure I have a quiet, snuggly evening with the kids.  Sophie’s been out of sorts about Peter staying home from school and getting my attention all day and she could use some reassuring.  On the way home from the library this afternoon, Peter comments how Pippin, our little terrier mutt, loves to sit on my lap while I drive, preferably with my left arm draped around him.  Then he exclaims, “Mommy, I wish I was Pippin’s size!”  When I ask him why, he says because then he’d be little enough to sit on my lap all the time and be carried around.  “Wouldn’t that be nice, Mom?”  I’m so struck with the pronouncement that I have to fight back tears as my eyes meet his through the rearview mirror.  Not so many years ago, that mirror was the only medium through which Peter could tolerate eye contact.  I used to catch him staring at me in the car, his head whipping around, his gaze growing vacant, the instant our eyes met.  Then slowly, slowly, and with the mirror to cut the intensity, he began risking a brief moment of eye to eye contact.  Today, nearly 6 years our son, Peter not only looks at us directly, without the crutch of a mirror, he pines for those intimate moments -particularly with me, he either never had or was never able to tolerate.  There was a time I pined for them too, but not anymore.  Today I look at Peter and see my son, a loving, beautiful boy who greets the world with an easy smile and ready heart.  I never allowed myself to even dream that he would get to this point, that he and I would make the progress, as mother and son, that we’ve made.  So it’s true.  I’m through mourning the loss of the infant I was never able to hold, nourish, and protect.  That child is gone.  The boy in the car, the one wishing to be small again, that boy is my son, my Peter.  So tonight I plan to hold him tight, for as long as he can bear, so that together with his sister, he’ll know that intimacy, protection, and a mother’s embrace isn’t just for baby boys and furry friends.  They’re for Peter too.

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 20, 2010

October 15, 2007 and Chapter 22

Apple Picking (October 2007)

October 15, 2007.  The script for Peter’s synthetic B12 injections arrive today.  The geneticist has been trying to track down a drug manufacturing company to make this formulation for the past four months.  In June, we learned that Peter lacks the enzyme necessary to metabolize B12, which means the vitamin can’t get into his cells, a genetic deficiency which negatively impacts normal brain development.  The kind of B12 he’ll be receiving relies on a different enzyme for metabolism.  If we see improvement, he’ll need these shots every other day for the rest of his life.  Although I’m excited over the prospect, however slim, of Peter’s autistic features and brain function improving, I’m equally wary that the injections will turn out to be another dead end.  There have been so many dead ends in our quest to improve our son’s conditions and I fear the cumulative effect of lost hopes.  Later in the day I tell Peter what’s in store and as I focus on how he’s handling the news, Sophie begins to cry.  “Don’t do this to my brother,” she says.  “Please don’t do it, Mom.”  I have never loved my daughter more than I do in this moment.  There are so many things wrong in our household, so many days gone awry that end in tears or angry outbursts, yet this tiny five-year old reminds me that first and foremost, we are family, and that we love each other.  Peter may be relentless in his efforts to upset and tease Sophie, but he is her brother and in this perceived time of crisis, his offenses slip easily from her mind in favor of solidarity.  Sophie reminds me of the need to shed my own resentment and anger, pestilent feelings that too often color how I view, and undoubtedly on occasion treat, Peter.   I pull both my children close to me and kiss the tops of their heads.  I do my best to explain why Peter needs these shots and how they might help.  Then I silently pray my son forgives me for subjecting him to yet more physical assault.  I thank God for allowing Sophie to instruct me in the art of unconditional love and I pledge to hold against my heart the gift of her lesson.

Chapter 22:  From Albany to Virginia

Our work continued with Sue over the course of the next few months.  Peter’s transformation on Risperdal was nothing short of miraculous.  Although not a magic bullet, the tantrums, the toileting escapades, and much of the other unmanageable behaviors either diminished significantly or disappeared altogether.  Each night I drifted off silently thanking the pharmaceutical company that manufactures those tiny round pills so that parents like Pat and me might occasionally sleep with both eyes closed.

The other noticeable difference had to do with Peter’s speech.  Despite speech and language therapy twice weekly, which had begun six months or so earlier, we hadn’t noticed much improvement before Risperdal.  I don’t know why the medication helps so many autistic kids and other children with autistic-like brain disorders, but there’s no doubt it works.  The medicine didn’t bring him out of his fog entirely, but the change was like the difference between a fog so thick you can’t see your own hand in front of your face and one where visibility is low but its still safe, let’s say, to drive.  To us it felt like a clear, crisp fall day, the kind of day where a steady stream of blowing leaves filters and purifies the air.  Without warning, pronouns began to show up, as did plurals and even a few conjunctives.

Spring 2006

He was becoming another child, at least for a while.  Sue began making small but noteworthy inroads, optimism returned, and I found myself anxiously awaiting each Tuesday so that Peter and I could make the trek to Albany and learn something new I could then take home and practice.  But then something happened and the medicine seemed to stop working, not all at once but slowly, like a slithering snake.  Over a period of weeks the aggressive edginess returned, the dizzying mood swings, the rages that seemed to last for hours and that left Pat and me feeling like we’d been slowly dismembered by a rabid forest animal.

This unexpected downturn lead to more drugs, and sometimes different drugs, though nothing brought back the window of opportunity Peter experienced during those first virgin weeks on Risperdal.  We gave Ritilin a try, but stopped after watching our son sob uncontrollably for three days.  Then we added Risperdal back but at a higher dosage.   The unwanted behaviors only escalated.  We’ve since learned the Risperdal dose that works best for Peter is an extremely low one, .5 mg twice a day.  So far age and growth have not altered this fact, though we have tinkered with dosages now and again, just to make sure.

Pat and I knew that yielding to the temptation offered by medication would be a tricky proposition, but we had no idea of the emotional rollercoaster it entailed, both for our child and us.  We were confused, frustrated and angry.  We weren’t happy with the prescribing nurse practitioner because every time we went to see her she asked the same solitary question: “What behaviors are you trying to control?”  She barely ever spoke to Peter and she certainly didn’t interact with him or make any effort to evaluate or understand his problems.  To us she seemed nothing more than a dispensary.  She was also not accessible by telephone.  Every single tinker of medication, every little report of a possible side effect, or change of dose required a $75 cash-only, 5-7 minute office visit, with Peter in tow.  I found myself making the trip to Albany two or three times a week.  It was ridiculous, expensive, time-consuming, and entirely unfair to Peter, who once we arrived, was completely ignored.

Sue was sympathetic when we shared our complaints, but she also offered a gentle reality check.  There are very few child psychiatrists within a 90-mile radius of where we live and waiting lists can reach well into the following year. Second, medicating children for psychological disorders is an unpredictable business, even more so than it is with adults.  This was especially true in Peter’s case because we had no family history and no confirmed diagnoses from which to make at least a few education guesses.

Spring 2006

So we kept plugging along, returning eventually to our original dose of Risperdal, but without much forward progress.  For instance, during one session I shared with Sue that Peter threw a stone directly at Sophie’s head, and so then he and Sue reenacted the incident using rubber frogs on the floor of her office.  Although she did her best to tease from our son a rudimentary sense of empathy, responsibility, and cause and effect, in the end, her efforts proved largely fruitless.  Peter showed no understanding or interest in what she was trying to accomplish and he often behaved sarcastically, certainly passive-aggressively, toward her.  Before long, it was clear we had reached another stalemate and Sue finally said as much one afternoon.  I knew it too but our sessions, though frustrating in terms of Peter’s progress, benefited me tremendously.  I wasn’t ready to give her up, even if she knew it was time to turn Peter over to someone more specialized.  In some ways, over the course of our year together, I had become the patient.

I remember Sue smiling sagely when I brought this to her attention.  She implicitly understood my struggles in a way no one else besides Pat ever could have imagined.  But we weren’t there for me, at least officially.  Helping Peter was the goal and primary purpose.  “I think his problems are organic,” Sue broached.  “I think there’s some physical damage.  Neurological.  His responses are the same no matter what we do.  It just doesn’t add up.”  I knew in my mind if not my heart that I was hearing the truth, so I nodded slightly.   “It’s beyond what I can do,” she whispered.   “Let me make some calls and see what I can come up.”

When we left that afternoon I hugged Sue goodbye and then ambled out of her office with Peter’s hand firmly gripped in mine.  When I let go, he ran to push the button on the elevator, something he still enjoys doing, and my stomach sunk as we descended to the ground floor, knowing full well the two of us were on our own again, flung lovingly, but irrevocably, from the comfort of Sue’s nest.

While I waited for Sue to make her calls, I began making some of my own.  My first was to Jane Aronson, our trusted ally in what had proved to date a very bumpy adoption journey.  I had made this call before, without much to show for it, but I knew I needed to try again.  Sometime after we had started vocalizing our concerns about Peter, but while we were still in the stage where everyone kept advising us “to give it time,” I sent an email to Dr. Aronson, asking for help.  She suggested we visit a therapist in the city, and so we made an appointment.

Despite hearing the problem was Peter, the therapist asked to meet us alone, as a couple.  So we arranged aftercare one day at the kids’ preschool and dutifully drove into New York for our childless appointment.  The therapist was stylishly dressed, older, and I distinctly remember her asking whether we’d like some iced tea.  I smiled because the offer was so Southern; in fact, I don’t think anyone had ever offered me iced tea since moving up north.  After 30 minutes or so of extracting our personal histories, she announced that our problems with Peter, and mine in particular, were a direct result of my not having sufficiently grieved over my miscarriages and infertility, as well as the loss of Ben, the baby we turned down in Russia.

I recall scrambling for the elevator, speechless and in shock, as Pat stayed behind to scribble out a hefty personal check.  We were both fairly quiet in the car for the first few minutes but then Pat slammed his hands on the steering wheel.  “That was complete bullshit!” he screamed.  “My God, did it not even occur to her that we’re doing fine with Sophie?”  I began crying after that but not because his outburst upset me but rather because it gave me permission to release all the pent-up confusion and frustration I’d been holding inside since that woman with her pitcher of iced tea first opened her mouth.  Needless to say, we chose against scheduling a second appointment.  Pat drove home with my head resting in his lap, where the tears subsided in favor of the calming warmth his presence most always offers me.

Luckily for us, enough time had passed since then that I was willing to give Dr. Aronson’s recommendations a second chance.  After all, how could she know the therapist she referred us to would suggest I was the one interfering with Peter’s attachment and generally causing all our family’s problems?  And besides, by that juncture, we’d spent enough time with Sue, a known and respected expert in the field of attachment, to know in our hearts, once and for all, that Peter’s problems were bigger than us, and that neither of us had caused them.

So the second time I called Dr. Aronson’s office to get the name of someone to whom we might bring Peter, she didn’t mince words.  “It’s time to see my friend Ron Federici.  He’s the best, Mary.  It sounds like this is a serious problem.  I’ll call him first to see if he can get you in sooner than later.  Give me a day or two, then call yourself.  In the meantime, look him up on the web.”

True to her word, Dr. Aronson made her phone calls to advocate on our behalves, and we were able to plan a trip to Virginia to see Dr. Federici within three weeks.  As far as I can tell, her intervention saved us about four or five months of waiting for an available appointment, and therefore further decline.

Ronald Federici is a board certified clinical neuropsychologist with a host of other impressive credentials too numerous to list.  He’s also the adoptive father of seven children, many of whom were rescued from Romanian orphanages in the 1980s and early 90s.  International adoption, and more specifically, the developmental, behavioral, and emotional issues that plague orphanage children, which in turn wreak havoc on the grossly unprepared lives of their new, mostly well-intended parents, is both his business and passion.  The prospect of meeting this man, and having him examine our son, felt both exciting and worrisome.  After reviewing the materials on his website, and watching some of the video clips from various interviews and public appearances, it was clear this man knew his business.  He also seemed tough, a real roll up the sleeves kind of guy.  Though I couldn’t predict exactly what he would say when our visit was through, I knew it’d be substantial, as well as life-altering.  In the private chambers of my heart, where my deepest fears are lodged, I’d always felt there was something wrong with Peter, something serious and not amenable to an easy fix.

The waiting period flew by because it’s not easy to prepare for a trip to see Dr. Federici.  The amount of paperwork to be filled out rivaled what I imagine an IRS audit process requires.  But we did it.  The extensive background questionnaire, the rating scales, the teacher forms, and copies of all past evaluations.  The list goes on and on but I understood then and still do why he insists on being able to study the child’s entire “knowable” past from every possible angle.  With kids from Russia, and I’m sure other countries as well, there is no prenatal or birth history, no family medical history, no history of any kind prior to adoption.  Even vaccination records, which some orphanages provide, are suspect and which is why many parents opt to revaccinate their children once in the United States.

But none of this bothered me.  Like filling out the droves of pre-adoption paperwork, I was very motivated, almost as though I was jump-starting the engine that would lead us toward our son’s restored health..  The only real difficult part of Dr. Federici’s pre-appointment requirements had to do with his position on medication.  He feels that children should be evaluated, whenever possible, without benefit of behavioral medications in order to establish both a baseline and to accurately identify any underlying organic or psychological conditions.  Although we agreed to this prerequisite, tapering Peter off Risperdal was no romp in the park.

I think after a time, most parents with children on behavior medications often start questioning whether the meds are still working.  However, all any of us have to do to reassure ourselves otherwise is to slowly and properly withdraw the medication(s) and observe what happens.  It’s not a pretty process, at least it wasn’t with our son, and it was painful to watch him backtrack. Every day a few more of the unbearable behaviors returned, some of which we’d almost managed to forget: playing with poop, “da tee tee da da”, and spinning like a top on amphetamines, just to name a few.  By the time we were ready to leave for our 5-day sojourn, Pat and I were pulling our hair out.

But as when we started working with Sue, there was still something invigorating, even hopeful, about embarking on this mission to Virginia.  I imagine it’s a little like fearing you might have cancer but are too fearful to visit the doctor.  Denying reality has its drawbacks and almost always backfires.  There can be great relief in finally confronting the truth and then formulating a plan for addressing it.  I felt like I’d much rather go down trying then continue to fool ourselves about the seriousness of our problems with Peter.  Cancer can be treated, and more and more often cured, with proper intervention.  Despite real trepidation, I was hoping the same held true for our son.

And we wouldn’t be traveling alone.  By this time we had convinced Pat’s mother to move from West Palm Beach back to New York to be closer to us, her other son John, and her five grandchildren, old and new.  We bought a little house about a mile from ours and Pat used part of it as his office, which worked out perfectly.  His mom had company and Pat had a quiet place to work, away from the noise and commotion of our bustling household.

Peter, Sophie & Grandma (Christmas 2007)

Despite her age (81 at the time), Pat’s mom insisted on taking the 6-hour trip with us to watch Sophie during the first day of neuropsychological testing and participate with the rest of us in the subsequent 2 days of behavior intervention.  Pat’s mother has this amazing ability to keep the two of us sane, and perhaps because we try harder to achieve some balance toward the kids when she’s with us, we always seem happier as a family.  She’s somehow able to deflate our ever-ballooning feelings of despair and exasperation with her wit, advice and example.  Though she loves our kids completely, she worries about their futures as much as we do, especially Peter’s.  But she also accepts their pasts as part of who they are, and never seems to take their behaviors personally.  If she were only 50 years younger, I believe she would be the ideal candidate for parenting alcohol exposed, attachment-disordered children.   As it is, she’s a Godsend in my life.

When we left early the day before the evaluation, car packed, DVD player poised for Finding Nemo, and the cooler filled with snacks and drinks, it almost felt like we were leaving for vacation.  Poor Grandma, who’s tiny even by Sicilian standards, was sandwiched in the back between Sophie and Peter, who were both still in car seats.  It was a long trip, to be sure, but we arrived early enough to get situated in our rooms and settled.  The hotel unapologetically flubbed our reservations and gave away the adjoining rooms we were promised.  So Pat wound up sleeping with Peter in one room and I stayed with Sophie in the other.  Grandma deserved her own room.

Late that afternoon we walked around Fairfax, which is a beautiful, historic city dating back to the 1700s and within shouting distance of the District of Columbia.  We chose what looked like a kid friendly restaurant and enjoyed a decent, if not spectacular, seafood dinner.  Peter made himself vomit at the table, but luckily not until we were mostly finished.  Thinking he was sick, the waitress was sympathetic.  As is usually the case with those who briefly peer into our lives, she undoubtedly failed to understand, much less appreciate, why we left in a disgusted, embarrassed rush.

After the dinner that was cut short, we walked until we found a big green space where the kids could run off some energy before going to bed.  Because we wanted Peter well rested for the next day, both kids were tucked in by 7:45.  I read for a while and then Pat and I emailed back and forth from our laptops, neither of us savvy enough to have figured out “live chat” or Facebook.  In a way it was a little romantic, we’d never been separated in a hotel before, and each time I clicked the send button I’d wait anxiously for his cute, sometimes flirty replies.

Meeting Dr. Federici the next morning was an unforgettable experience.  His office was nondescript, very low key, the way I think all offices of this type should be, but as soon as he walked into the waiting area the energy level increased tenfold.  Tall and a little lanky, he possesses this booming, fast-clipped voice that leaves no doubt about who’s in charge.  We have taken our son to see Dr. Federici three times, but on this first visit he spent 45 minutes or so with Pat and I before he took Peter for testing.  He wanted to hear our story, our adoption history, including the foul-up with the baby we called Ben and our decision not to move forward with that adoption.

While in Russia, the orphanage director told us that Peter’s teenage mother came to visit him 3 or 4 times and brought an apple, but then stopped coming.  When we got to that part of our story, Dr. Federici interrupted and said, “I know – the mother brought him an apple.”  Pat and I just looked at each other.  Despair and astonishment swirled inside our foolish brains with sickening synchronicity.  How could we have been so naïve as to accept as truth this pitiful, rote attempt on the part of the Russians to prove a bond, a connection, to offer a hint of reassuring hope that someone nurtured and loved our child as an infant?  They must think Americans terribly stupid, and at that moment, I wasn’t in a position to dispel any myths.

When we finished unraveling our tale, Dr. Federici paused for a minute, leaned toward us and said in a softer, more solemn voice.  “Let’s get this mess figured out.”  Standing up, he shook our hands, exchanged Italian niceties with Pat’s mother, and then handed us a stack of additional forms and questionnaires to fill out while we waited.  We were to take Peter with us at lunchtime and return him for more testing in the afternoon.  Busy banging something on the floor, Peter failed to answer the first time Dr. Federici called his name, which I found surprising because I nearly sprang to attention at the sound of his commanding tone, and so did Grandma and Sophie.  He didn’t bother asking a second time.  Instead, he leaned over, took Peter by both hands and without a hint of roughness pulled him firmly to his feet.  “It’s time to come with me now, Peter,” he said.  I bit my lip as I watched them turn the corner.  Our son never even looked back.

Hand-Flapping (Fall 2008)

Although I had a sense of what lay ahead, at least partially, the unknown diagnoses we were on the brink of receiving were terrifying to contemplate.  Autism was already a key suspect because of the previous questionnaires we had answered.  I had been asking “experts” for two years why Peter flapped his hands, walked on his toes, repeated his name, pulled his toys apart, was often unresponsive, tantrumed excessively, and spun in circles.  I still don’t understand why, up until then, the various professionals in our lives couldn’t see the obvious because every single one of Peter’s puzzling behaviors, which he exhibited routinely, was on the parent autism questionnaire.  It was abundantly clear to me by the time we reached Dr. Federici’s office that our Russian born son was somewhere on the spectrum, so I was prepared for that.  I was also prepared for a diagnosis of alcohol exposure, if not full-blown FAS.  Jane Aronson had primed us for that culprit within ten days of our bringing Peter and Sophie home.

When the testing was through, Peter emerged bouncing and toe walking, with an impish little smirk on his face.  We had brought plenty of toys and books to occupy Sophie during the long day but Peter simply walked over to the stack of adult magazines and started turning the pages to Newsweek robotically.  Dr. Federici motioned us into a conference room, a tiny bit exacerbated, maybe a little amused, and definitely shaking his head.

“The little bugger snuck one over on me,” he said with a hint of disbelief.  “You’ve got a sneaky one, there.  When we were taking a break, and I saw he was doing a puzzle, I took the chance to use the restroom.  I was gone thirty seconds, no more.  I swear.”  By this point I was fairly nervous.  Looking over, I saw Pat squirming in his seat.  Whatever happened was not good.  “And somehow he managed to destroy my office!”

I remember thinking the damage must be substantial for the unshakeable Dr. Federici to sound so astonished.  “In less then a minute, he took my letter opener and slashed my leather desk chair, he pulled every single plug out of the socket, swept my desk clear, he did something to my. . .” and then his voice trailed off.  I didn’t know what to say.  Either did Pat.  We’d become mutes glued to our chairs.  Horrified, I envisioned getting slapped, unceremoniously, with a damage bill for $10,000 and a concurrent invitation to never return.

“I gotta give it to him,” he finally continued.  Then he looked up, shook his head, and though I can’t be certain, I think he smiled.  He must have read our thoughts.  “It’s okay, guys.  My fault.  I got fooled.  By a 4-year old.  Honestly, it’s a good lesson.  I didn’t think it was possible anymore.”

Although relieved we wouldn’t be applying for another equity line of credit, it was unsettling to hear that of all the thousands of children he’d seen, ours was the one to pull a fast one over him.  I felt like I needed to apologize, profusely, but as soon as I started sputtering, he waved me off.  “Listen.  That’s over.  Here’s what matters: I know what to do.  There’s good news and there’s bad news.”  He paused to make sure we were listening.  Taking his cue, I did my best to erase the image in mind of Peter slashing a leather chair, but it wasn’t easy.  “Okay.  I’m gonna start with the bad.”

So we listened and took notes.  Peter was autistic.  Although his behaviors fell squarely in the moderate range of the spectrum, Dr. Federici felt other factors, including his early institutionalization, were causal factors for his symptoms.  He therefore believed the most appropriate diagnosis was “high-functioning autism” or PDD-NOS, which stands for Pervasive Developmental Disorder Not Otherwise Specified.  Seems like a catch-all, and maybe it is, but what it really means is that the person isn’t “classically autistic” but also is too impaired, including intellectually, to meet the criteria for a diagnosis of Asperger’s Syndrome.  On the spectrum, PDD-NOS falls more or less in the middle.   This was not good news, of course, but Dr. Federici made clear that autism was the least of our problems.  This was hardly a comforting statement to hear right after being told our child was autistic.

Peter also had full-blown Fetal Alcohol Syndrome, his symptoms and impairments falling within the mild to moderately affected range.  This news, though not surprising, was particularly difficult to hear.  It was the one possibility that truly terrified Pat and I since the onset of our adoption journey.  We tried so diligently to protect ourselves, as well as our future family, against this devastating condition but now we knew our efforts had failed.  “But it could be worse,” Dr. Federici jumped in as he watched our faces fall.  “Most kids I see with FAS are retarded.  Peter’s not.  His IQ is low, but in the low average range.  And with the right help, I’m certain we can raise it.  The autistic traits too – they’ll improve.  The autism is secondary, like a side effect – to both his early institutionalization and the FAS.  The point is, he can learn.  He can improve.  Believe me, I often sit in this very seat and tell parents there’s really very little to be done.  It’s devastating.  But Peter can be helped.”

Outer Banks, NC (June 2007)

I have this horrible problem, or maybe condition, I’m not sure, where my face turns beet red whenever I drink (which I rarely do), get angry, upset, embarrassed, even slightly overheated, or when I feel a migraine coming.  Since this covers a lot of territory, I’m forever feeling like I look either drunk, sunburned, or on the verge of a coronary.   My mother had the same problem so maybe its hereditary.  I could feel the heat rising in my face as I took in the news, trying desperately to understand how an IQ of 80, autism and FAS were not such bad things.

Next, he said we should have our son evaluated by a neurologist because he was concerned Peter was having seizures.  “Why?” I asked, puzzled.  No one had ever suggested this before.  “Because of the staring spells – lots of them.  Also because most of these kids I see, like Peter, have abnormal EEG findings that need and respond to treatment.  And treatment means improvement.”  Then he took a breath, exhaled, and said, “but here’s what really concerns me.”

As my flush spread to the point I could have fried eggs on my face, I looked over to see Pat so slumped into his chair that he looked like he could have faded right into the fabric.  How could there possibly be anything worse that what we’d just been told? “What really concerns me,” Dr. Federici continued, “are his dysregulated thought patterns – Peter shows little to no grasp on reality.  He doesn’t seem to know what’s real and what isn’t.  And he’s almost 5.  He should know, at least somewhat.”  Then he gave a few specific examples.  Honestly I think I’ve blocked them out because try as I may I can’t remember any.  One phrase from the written report that followed, however, remains etched forever in my brain: that Peter displays “pseudo-psychotic logic patterns.”  Holy Mackerel.

“But couldn’t that just be a developmental thing?” Pat pleaded.  After all, Dr. Federici also had told us only a few minutes earlier that despite our son’s low average IQ, he was functioning significantly below his potential.  His adaptive IQ, meaning how he was using his intelligence to interact and problem solve in the real world environment, was in the high 50s, which put him squarely in the retarded range.

“No.  Significant difference between straight IQ and adaptive IQ always indicates brain damage – which is what we’re dealing with here – Peter has FAS.  Maybe heavy metal exposure too.  You’re right in that he’s functioning like a much younger child, but my concern about his thought patterns, well, that’s a whole different thing.  You’re going to need to keep an eye on that.  Keep a journal.”  And then he gave us a list of behaviors to watch out for and write down.

Four or five months after our visit to Virginia, I almost hit a deer on the way home one day, with both kids in the car.  A little shaken, I pulled over to settle my nerves.  “Peter say go button,” he offered.  “Make car zoom on air.  Flap Flap.”  He was referring to something recently we’d watched on Lilo and Stitch, a kids cartoon.  He thought I could press a button and make the car hop and fly right over the deer, literally.  When I tried explaining, for the zillionth time, how cartoons aren’t real, that lots of things happen in them that can’t happen in real life, he began to tantrum.  “Peter fly car.  Peter fly car.  Mama don’t know.  Peter fly car!”  So into the journal it went.

By the time we were through with our post-evaluation debriefing, Pat and I were wobbly and on the verge of hallucinating ourselves.  In addition to learning our son was autistic, had FAS, possible seizures, and psychotic tendencies, we also learned that he suffered from ADHD, a mood disorder (probably bipolar-type), severe Post-Traumatic Stress Disorder (PTSD), sensory integration dysfunction, severe Attachment Disorder, and a host of learning disabilities across all domains.

When Pat and I lay in our separate hotel rooms that night, thinking our separate thoughts but occasionally emailing each other, we realized our reaction to the day was basically the same, and went something like this:  Oh my God!  Now what do we do?  Are our lives over?  Should we dump the kids with family members and disappear into the Alaskan Wilderness?  But as our panics waxed and waned, we tried to remind each other that Dr. Federici had a plan that he promised would help our son and return some semblance of normalcy, or at least functionality, to our home.

The next day we arose and met downstairs for breakfast.  Sophie was in a foul mood over the thought of spending another day in Dr. Federici’s waiting room, and Peter was on the loose, medication restarted but still incredibly jumpy.  I had wanted to switch rooms with Pat so that he didn’t bear the entire brunt of spending every night with Peter, but he characteristically declined the offer.  He looked so tired that morning, the kind of fatigue that derives from worry more than sleep deprivation, and I fought back a rush of emotions as I watched my deflated husband shuffle toward our table.  I realized right then how angry I was, at Peter, at our situation, at the fact we were spending four days with a neuropsychologist when we should have been enjoying D.C.’s glorious Cherry Blossoms. I was angry at the world, at God, for what felt like perpetual punishment, and all because we wanted a family.  Because I wanted a family.

Summer 2007

Pat’s mom sensed the change, the gravity, and as usual intervened.  She suggested we finish breakfast quickly and enjoy the morning sun for a few minutes before we left for our appointment, which was day 1 of Behavior Intervention.  At this suggestion, Peter began his ceremonial purging at the table but we caught it in time.  In no uncertain terms Pat made clear that he would be a very unhappy boy were he to pursue this particular line of sabotage any further.  Something in Pat’s eerie tone convinced Peter to stop.

Despite the early hour, the day was already hot and hazy as the D.C. area can be, even in early May.  We strolled slowly around a few neatly trimmed blocks.  The characteristic brick buildings, with their blooming window boxes and glossy black doors, reminded me how much I enjoy the greater D.C. area.  Our leisurely pace felt inconsonant against the hurried gait of business people rushing to catch their trains.  I’m sure most, if they even paused to notice, thought us tourists.  But tourists we weren’t.

I had the same feeling that morning watching the throngs of people passing that I had in the airport the morning my father died.  The news we had received only the day before in Dr. Federici’s office had turned my world upside down, completely, and was as difficult to process and accept as the news of a death in the family.  I was envious of these oblivious people, who had ordinary thoughts on their minds, and who neither knew nor cared that our lives were now changed, forever.  Theirs was just another day, indistinguishable in all likelihood, from a thousand others.   This day for us would be forever frozen in time.  Our son was damaged, seriously and permanently.  There was no turning back the clock of our lives.  We’d have to find a way to move forward.  I hoped Dr. Federici was right when he said he could show us the path.

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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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