When Rain Hurts by Mary Evelyn Greene

June 8, 2013

June 8, 2013

Peter's Pokemon drawing (June 7, 2013)

Peter’s Pokemon drawing (June 7, 2013)

June 8, 2013.  The saddest and most telling thing happened yesterday.  I normally make the long drive back and forth from Peter’s school on the weekends but Pat brought him home this time.  Peter was drawing a Pokemon dragon in the backseat, and then out of nowhere, began sobbing uncontrollably.  Pat had to pull the car over on the Taconic.  Having no idea what was wrong, he just held our son until he calmed.  It turns out that Peter thought he’d ruined his picture by coloring the dragon wings with a ballpoint pen.  He didn’t like how it looked.  When he walked in the house, Pat still lingering outside, I knew immediately something was wrong.  His normally happy-to-see-me-face had transformed into a portrait of childhood devastation.  Pat did his best to relay what happened, but I didn’t quite get it until I saw the drawing.  And then bam, it hit me like a ton of bricks.  It’s the best thing that Peter’s ever drawn, hands down.  It’s clear that in those few minutes, holed up in the quiet monotony of the backseat, all cylinders were firing.  What breaks my heart is that Peter knew it, too.  I know he did.  I could see it in his eyes.  He thought he had lost the moment, that opportunity to ride the wave of his own capacity until the switch of disability shut down the access.  He doesn’t have that many of these moments, perfect spurts of neurotypicality, and he’s now smart enough, and mature enough, to recognize when he does (as well as when he doesn’t).  How he must thirst for those feelings of completeness within himself.  I hate that mournful look in his eyes, the look that tells me he appreciates that he can’t always accomplish what he sets out to do.  His anguish in the car came not from frustration but from fear, the real fear that he wouldn’t be able to reproduce that drawing again if his life depended on it.  Peter’s journey is one of fits and starts, and though he’s made great progress, he has come to appreciate that it’s a rockier road than most.  I know his burgeoning self-awareness is good, developmentally important even, but I selfishly wish it were absent.  11-year olds shouldn’t have to bear the weight of their disabilities, especially ones thrust upon them not by chance but by prenatal recklessness and post-natal deprivation and neglect.  But  I can’t shield him from himself, not in the end.  So instead, Pat and I reassure him that the drawing is still superb.  I make sure and post it on Facebook so as to provide tangible proof of our parental pride.  It’s a wonderful drawing, and not with the caveat “for a kid with special needs”.   Normally his drawings are a bit nonsensical, they lack cohesion and are disjointed and difficult to interpret.  Often imposing one figure on top of another, I’m never sure whether that’s how he sees the world – a layered abstraction that has meaning only for him, or whether it’s simply a problem transferring thought to paper.  But yesterday he got it right.  Now I have to gently steer him toward a more confident belief that it wasn’t just an anomaly.  That he has many varied and wonderful abilities that he indeed is learning to access more reliably.  And perhaps more importantly, that he will succeed when he sets his mind to it and not just when the window randomly opens.  But that’s a lesson learned over time, and I didn’t want to bore him with a lecture or overdue the praise and make him even more self-conscious. So instead I kiss the top of his head (which I won’t be able to do much longer) and ask about the rest of his day.  My brave boy takes the cue and I listen carefully as events unfold before me.  

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 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.

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.

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.

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 20, 2010

September 19, 2010

Storm King (Sept. 18, 2010)

September 19, 2010. Pat’s mom spent the night for the first time in weeks and we were chatting about recipes when the largest spider I’ve ever seen tiptoed across the kitchen floor.  Without the slightest interruption in conversation, she stands up, walks toward the meaty beast, and smushes it with her slipper.  Eighty-five years old and physically not much bigger than Peter, my mother-in-law is one impressive lady.  After she leaves, I spend the rest of the morning baking quiches and making fruit salad for our brunch guests, who have been unfailing supporters of our efforts to help Peter.  Sitting in the back of the room, through endless hours of testimony during the Due Process Hearing, I can still see my friend’s features fluctuate between outrage, incredulity, even bemusement, as the facts of our case unfolded.  As tempting, however, as it can be to rehash history, today is about friendship and family, and so we steer clear of the elephant in the living room and simply enjoy each other’s company.  Later, when the storytelling winds down and there’s nothing but syrupy goo left in the peach pie dish, I sit at the kitchen table and enjoy the late afternoon sun pouring lazily across my lap.  I love this time of year.  The leaves have begun to change, the nights are now inevitably cool no matter how warm the day, and the light of late afternoon transforms the landscape into a golden hue of mellow, dappled beauty that never fails to astonish me.  Our brunch guests have left and I find myself listening to the dishwasher churn away all evidence of our earlier soirée as Peter and his best buddy play Wii.  I feel calm in this moment but at the same time terribly depressed and tired.  I rarely admit this to anybody, not even myself, but its true.  I can’t sleep – I haven’t anyway, in weeks, maybe months, and I’m well beyond mere simple fatigue.  I’m terrified of what will become of our family.  Peter’s not in school and the decision from the Hearing Officer isn’t expected before September 30th.  I fully expect to lose but that’s not really the point, nor is it what keeps me awake at night.  Our only real chance, in terms of the legal system, awaits us in federal court.  The Due Process Hearing, and the appeal to the State Department of Education that follows, are preliminary steps we must take before knocking on the door of justice.  What I can’t stomach is the idea that in the meantime, we either have to send Peter to a school that both destroys his brain and our home life as surely and predictably as the most heinously-conceived computer virus, or I home school him so that he and our family can remain protected and intact.  Home schooling wouldn’t be such an unpalatable option if Peter still didn’t struggle with significant attachment issues, if he didn’t have a plethora of special education needs, and if I didn’t mind, once and for all, closing the door on the opportunity to resume my legal and teaching career.  It’s clear our local school understands this, as they hold all the cards, and they are counting on us to wave the white flag in surrender.  But what I don’t understand, when I peel away all the layers of acrimony, is why they would choose to force us down this road when there are better options for our son, options that don’t cost the taxpayer a dime but that afford Peter the chance to improve his cognitive functioning and work on life skills, such as toileting.  Why are they continuing to withhold that opportunity?  Don’t these people want us out of their lives as much as we want out of theirs?  I realize they hate us now, particularly me, but they consistently defend their fondness for our son and their commitment to his well-being and growth.  Forget for a moment the debate over academic stagnation and cognitive regression.  What I can’t reconcile is the fact that they would rather try to force us to send him back to their school, knowing we feel we’ve been lied to, accused of child abuse, and been the victim of poorly disguised entrapment attempts, than set him free of their hold.  Why has one child, one fight, become all-consuming to individuals charged with the public trust, including our tax dollars and our children’s futures?  Peter doesn’t understand why he’s not in school and we haven’t done a stellar job explaining it to him, mostly because we don’t understand ourselves.  The Red Hook Central School District will survive this blip in its history, of that I have no doubt.  I wish I could say the same for our family, and our son.  I hear him laughing with his friend, happy for the moment and content.  Pat and I moved mountains to gain the privilege of hearing the song of Peter’s childhood and I have no intention of letting anyone, ever again, turn off the music that is our son’s heart and soul.  Outside the light wanes and the trees rustle in the wind.  If I listen carefully, I can almost hear the first crackles of the leaves, another symphony of sight and sound that in a few weeks will reach its apex, all in preparation for winter.  The certainty of the seasons loosens the leaves from their branches so the breeze can implore them away, once and for all, but always with the promise of new glory come spring.  As autumn creeps toward the Hudson Valley, I hope and pray that the school has the wisdom to loosen its grip on our family.  If they could only let us go, they would realize that new, more productive challenges await them.

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?

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?

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 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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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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April 8, 2010

September 29, 2007 Journal Entry and Chapter 20

Gill's Farm Stand (Hurley, NY, September 2007)September 29, 2007.  Sophie, Pat and I are at the pumpkin patch, tripping over pumpkins littered across a wide field and chasing each other through the deep orange obstacle course.  Sophie picks little pumpkins for Grandma, Lindy, and herself and one big one to carve a few days before Halloween.  Pat and I choose a large, skinny one for Peter, who is home in his room, with Lindy keeping watch.  We made an emergency call an hour earlier and luckily she was able to come over and bring relief.  I had to leave, get away from Peter for a while, but I had no desire to leave Pat and Sophie behind.  In a sickening moment of deja vu, I discovered Peter threw away my new eyeglasses, my engagement ring, my favorite watch, an engraved bracelet Pat gave me as an anniversary present, and a bracelet given to me by my sister.  Like Sophie’s birthday presents, we had come to the conclusion there was no other conclusion that didn’t involve Peter, but we searched and searched for the missing jewelry nonetheless.  Peter participated in the hunt.  An opportunity arose to question him about it and he finally confessed.  He admitted taking my jewelry, which was on top of the vanity, and placing it at the bottom of the wicker trashcan in our bedroom.  My most cherished possessions went out with Monday’s garbage.  The day until then had been going so well.  The kids had a soccer game in the morning, we went by the new house to check on progress, had leftover Chinese for lunch, made silly, homemade Halloween decorations, and were planning an outing to the pumpkin patch later in the afternoon.  One of the happiest days I thought we’d had in a while.  But now I’m numb and dazed, doing my best to feign fun for Sophie’s sake.  She’s nervous but thrilled to have us alone.  I stare at the endless vista of pumpkins and wonder whether Peter will be with us for this annual outing next year.   I should be crying, I feel like crying, but the tears don’t come.  Instead, I chase Sophie and let her chase me.  I take pictures of Pat and Sophie as they zig and zag through the corn maze and scramble into the hay tunnel.  Despite the sorrow burrowing inside, I’m having fun.  As a family of three we’re happy.  As a family of four we sometimes aren’t.  Surely that should be enough to make me cry.

Chapter 20:  Widening our Circle

One sunny morning in May, my sister walked in to find the kids and I playing on the floor.  All three of us looked up when the door opened but only my face registered shock and surprise.  As much as I love the idea of Patty being able to drop in whenever she liked, it’s an impossible wish because she lives in Atlanta.  But there she was, broadly smiling in her quiet way, bracing for the noise and ruckus that her arrival was about to cause.  Surprise!

She had come for my 40th birthday, which was only two days away.  Pat’s mother was turning 80 and with my encouragement, he and his brother had flown to West Palm Beach the night before to surprise her.  I knew I wouldn’t feel alone on my birthday because I had Sophie and Peter.  Despite growing concern for our son, I still reveled daily in the bounty of our good fortunes and felt content and fulfilled with our children by my side.  But it seems Pat and Patty had conspired to make sure the kids and I had company for the weekend.  I couldn’t have been more thrilled.

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

“What should we do?” Patty asked, once the hoopla settled.  “I mean, after we go to Albany . . .”  So Pat had told her.  Thank goodness.  Within the hour I needed to be in the car, heading to Albany for our appointment with a pediatric infectious disease specialist named Dr. Martha Lepow.  Peter’s pediatrician had called three days ago to inform us that an x-ray taken of his chest showed a lesion on his lung, an indication of active tuberculosis that could not be ignored.  His preschool was not thrilled though the director took the news fairly well.  Although we agreed Peter should stay home, she would wait until she heard from us to inform the other parents.  We had called Dr. Aronson about the x-ray findings and she urged us to stay calm and wait for the specialist’s opinion.  “In all my years of practice,” she said, “I’ve never seen an active case of TB in any of my kids.”

When Dr. Lepow walked in the examining room, a short, commanding woman with a gray pixie and tortoise-rimmed glasses, she took one look at Peter and proclaimed that he didn’t have TB.  “So you’ve looked at the x-ray?” I asked.  “No, not yet,” she admitted.  “I can tell just by looking at him.  He’s got other problems – we’ll talk about those, but let’s get this TB thing over with.”

Sure enough, she examined the films and confirmed that Peter didn’t have active TB.  The “lesion” on the x-ray was his arm.  I was so relieved I couldn’t even get angry with the idiot radiologist who read the x-ray locally.  But even I could pick out the outline of the tiny elbow once Dr. Lepow showed my sister and me the film.  Clearly he had moved during the procedure.  I’m sure Peter wasn’t the first 3-year old to squirm during an x-ray either.  Still, he was okay, and that’s what mattered.  There would be no mass hysteria at the preschool and we wouldn’t have to embark on some awful, long ordeal that may or may not have restored his health.

It’s amazing how much a word like tuberculosis can hang over your head, clouding your thoughts and feeding your very worst fears.  Our perplexing son was physically healthy, at least relatively, and I felt free to enjoy Patty’s company and my impending 40th birthday with an unburdened mind.  Like other doctors who had met our son, Dr. Lepow was worried about what she saw, and perhaps more to the point, what she didn’t see, but I naively downplayed her observations.  After all, he didn’t have TB, and wasn’t that the take home message?

But she did point out a few things that I dutifully committed to memory.  His range of motion was abnormal, for instance, there were prominent and dark circles under his eyes, and despite his being much sturdier than Sophie, Dr. Lepow said he needed to gain weight.  She suggested we supplement his diet with Pediasure and keep a close eye on his growth.  If his height didn’t make the chart in three months, she suggested we take him to a pediatric endocrinologist.

“He’s not catching up like you’d expect,” she said.  “It doesn’t mean he won’t, he may just need a jumpstart.  His gait’s off too – this little fellow’s got low muscle tone.”

Peter (April 2005)

Patty and I discussed the doctor’s concerns on the way home and by the time we’d driven the 60 miles back to Marbletown we agreed that Peter’s odd behaviors were of greater concern than his unimpressive growth rate.  My sister hadn’t seen Peter since January and she felt his strange affect and behaviors were every bit as peculiar as they’d been last winter and maybe even more pronounced.  She also gently pointed out that Sophie, who was a year younger, was speaking much better than Peter.  I assured her that I’d speak with Pat when he returned from Florida about getting some assessments done.

Thanks to the eradication of the TB scare, the rest of the weekend was remarkable in that it was unremarkable.  That is, until Sunday rolled around, which was my birthday.  I don’t remember what we did that morning but when we came back home after lunch, Patty insisted we go shopping even though her plane was leaving later that afternoon.  She said she wanted to see the new outdoor adventure store at the mall, which I did think was an unusual request (my sister’s not really a mall person), but I was happy to oblige.  I was just glad she was there.  So we left again and walked around the big retail space, complete with camping equipment, kayaks, fishing poles and hunting gear.  Stuffed bear, deer and bobcat heads hung from the walls, and we quickly made for the exit sign once Peter noticed the taxidermy displays and began screaming inconsolably.   On the way home we stopped for milkshakes at Stewarts and laughed at the sight of Peter and Sophie trying in vain to suck the thick contents through their flimsy straws and into their mouths.

By the time we got home the kids’ clothes were covered in milkshake and the four of us were hot and sticky and smelled like melted ice cream.  When I walked in the door I was instantly bombarded with SURPRISE and the sight of Pat’s smiling face.  He and my sister had fooled me, and fooled me well.  Our living room was stuffed with family and friends, many of whom had driven from the city to celebrate.  I had no idea how Pat arranged to come back from Florida early or how he managed to throw the party together in the short time we’d been away from the house that day.  But somehow he managed it and so I kissed him, my face turning flush as the guests cheered.

It would have been a great party, too.  As it turned out though, I never even got the chance to say hello to anyone.  In fact, I was still standing in the doorway when Sophie came barreling around the kitchen island, tripped over a bar stool and suddenly became airborne.  I saw the coming catastrophe clearly in the split second it took before she landed face first onto the corner of the island and then bounced toward the floor where Scout, our child-loathing dog, stood waiting.  I lunged to catch her but it was too late.  Sophie landed on top of Scout and the only thing I remember after that was a horrible yelping, screaming noise.  I pulled Sophie one-armed from the snarling mayhem and held her to my chest as I quickly dashed around the corner into the mudroom, which was unoccupied.  I held her tightly for a moment and then gently lifted her quivering chin to assess the damage.  I could hear Pat gasp “Oh my God!” behind me.  Sophie’s face and my shirt were covered in blood.  “Get a towel,” I yelled.  My voice shook with fear and my body began trembling.  “I’ll be in the car.”

Pat drove like Robin Williams on speed to the hospital while I sat in the back seat and cradled Sophie, whose screams by then had dwindled to the occasional muffled sob.  By the time we got to the Emergency Room, she’d stopped crying altogether.  The gash responsible for the copious outpouring of blood was less than a half-inch long and ran perpendicular to the ride side of her upper lip.  We tried to keep her still in the waiting room but it was nearly impossible.  Holding the towel to her face, she played peek-a-boo with a young man who was also waiting to be seen.  “Koo-Koo,” she smiled, wincing in pain.

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

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

The only blessing that came out of the whole ordeal was that the emergency room doctors adamantly confirmed that Sophie’s injury was not a result of a dog bite.  Scout caught her lip with her toenail, which is not good, but the news was a relief because it meant we didn’t have to consider finding another home for our beloved old dog.  If she didn’t bite Sophie in that kind of situation we felt confident she never would.  There was no plastic surgeon available but after waiting over two hours, an ENT finally showed up to stitch the wound.  The ER doctors felt an ENT was the next best thing to a plastic surgeon because they do so much facial work.  Because of Sophie’s age, they had to sedate her, which was no fun, but I was allowed to hold her the entire time, even while the surgeon sewed her bruised and broken lip.

As we were leaving the ER, a nurse approached us with a wonderful ink drawing the young man in the waiting room drew for Sophie.  He too was obviously struck by our daughter’s amazing resiliency and charisma.  By the time we got home the party was over.  Pat’s cousins, who stayed to watch Peter, were cleaning up.

Sophie's ER Souvenir (May 15, 2005)

My sister’s plane had left two hours earlier.  The cake was eaten, the food and drinks were decimated, and the couch was littered with unopened presents and cards.  Pat had periodically called home to check on Peter and our guests, so everyone knew that despite the horrific amount of blood, Sophie’s injuries were minor.  It seems our guests were so relieved that Sophie was not seriously hurt that they decided to celebrate in earnest.  We later heard that Pat threw the best party he never attended.

Because Sophie still clung to many of her orphanage ways, she insisted on wobbling up the stairs from the garage into the house on her own drunken volition.  Her lip was twice the size of Tammy Faye Baker’s and the right side of her face and eye, where she bounced off the corner of the kitchen island, was grotesquely swollen and purple.  “Where the peoples?” she asked, in the most pitifully small voice.  “I want cake.”

We quickly explained that cake would have to wait and shuffled her upstairs, where I took off her blood-soaked clothes and changed her into pajamas.  She was asleep midway through the process and I fought back tears as I tucked her in and lightly kissed what I prayed was only her temporarily misshapen face.  After changing my own clothes and throwing the entire bloody pile in the garbage, I sat on the floor next to Sophie’s bed and watched her sleep.  The rhythmic sound of her breathing beckoned me toward a calmer mindset and after a while, I too relaxed.

While Sophie healed over the course of the next week, I forgot all about the Big 4-Oh.  After all, any trauma I might have been willing to entertain regarding my 40th birthday had been snuffed out instantly in the wake of our daughter’s accident.  However, once it became clear that Sophie would not be permanently disfigured, and that we wouldn’t even need a plastic surgeon to improve the scar, our worries slowly migrated back to our son and his unshakeable troubling traits.

As we grew to understand Sophie’s moods, including some new twists because she was cranky and sore in a way we hadn’t yet experienced, the continuing sense of not knowing our son was horribly disturbing and more than just a little eerie.  Pat and I could ramble on about Sophie, her likes and dislikes, her funny and perplexing habits – as amiably and confidently as any other set of parents.  But Peter was an enigma, and as his behaviors began escalating, he seemed more like an explosive device waiting for the last tick-tock before detonation than a cuddly toddler.

Blowing Rock, NC (July 2005)

The floodgates opened just as we began taking some proactive steps, making appointments for various evaluations despite our pediatrician urging us to wait.  Peter began rubbing feces on himself and his belongs again, peeing everywhere and on everything, ripping wallpaper, raging, hurting Sophie, biting, spitting, refusing to eat, vomiting at the table, bolting from us in crowded places, and destroying his toys.  It was as though he had been in a trance and all of a sudden he went into some frenzied overdrive.  Looking back, it seems one minute we had an oddly robotic child who was nonetheless generally compliant and then we blinked and found ourselves staring at a feral child who could neither be consoled nor contained.

As we waited for the appointment dates to arrive, and the written reports of the evaluations that followed, Pat and I did our best to support each other.  Leaving the kids with a babysitter simply was not an option.  How do we explain to a teenage girl or grandmotherly woman about Peter’s behaviors?  That she needs to wrap duct tape snugly around our son’s diaper at bedtime so that he doesn’t pull it off and cover himself and his bedroom with unspeakable mess?  Or to not pay any attention if he vomits his meal at the dinner table – just clean it up and offer him another plate of food! I just could never play out these conversations in my mind.  So we stayed home, always.

But at least we had our evenings, thanks to our rigidly imposed 7:00 pm bedtime for all those under the age of 30, and on weekends we’d take the kids hiking, do our best to wear them out, and then take a long, leisurely drive afterward.  On the days when all went according to plan, the kids would nod off from exhaustion and boredom and Pat and I would escape into our own private revelry as we cruised the back roads in search of a yet-undiscovered treasure.  Every once in a while we’d come upon a fantastic barn or homemade road sign – even an interestingly posed cow, and I’d swat at Pat’s arm to pull over so I could take a picture.

Also, our virtually symbiotic ability to read each other’s signals, to jump to the rescue with a silly joke or a supportive squeeze or maybe even something as small as knowing smile, is what keeps us afloat, as parents, partners and individuals.  I suppose we’ve always had this kind of relationship, we certainly had our share of hardship as a couple before adopting the kids, but combating and coping with Peter’s problems made us consciously aware of it.  I’m not sure I possess the strength or resolve to parent our son without Pat by my side, I shudder to think what’d it be like, and so I pray each night that our health remains intact for at least a year or two beyond Peter’s undoubtedly prolonged adolescence.  We are one of the few couples I know where adversities, sometimes the size of land mines, have failed to corrode the seams of our marriage.  I truly look forward to that time when Pat and I can go out to dinner again, maybe even catch a late night movie, or take an exotic trip.  So what if he’s 81 and I’m 64?

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

I was engaged in just this sort of day-dream, renting a house for a year in Ireland, to be exact, when Pat walked in with the mail, which turned out to contain the key to unlocking Peter’s access to special education and preschool intervention services.  Peter’s speech and language evaluation indicated significant delays in both receptive and expressive language skills, as well as profound difficulty processing auditory information.  In light of his normal hearing test, these results more than supported the need for preschool-based speech/language intervention.  The occupational therapy evaluation was no different.  Peter was significantly delayed in both gross and fine motor skills and demonstrated great difficulty with motor planning and oral manipulation.

Within a few weeks the county had arranged for therapists to work with Peter twice a week at home.  Having professionals in our living room, their bags of therapy toys in tow, felt wonderfully productive.  Peter’s new therapists were confident and knowledgeable about child development and their respective disciplines.  Within no time, they had him blowing bubbles, crawling through nylon tunnels, stringing beads, working on single step directions, pronouncing the letters of the alphabet and matching pictures to their corresponding words.  We were assigned a case manager who’s job was to oversee Peter’s therapies, assess his overall improvement, and make any changes or recommendations to services based upon observed progress or newly identified need.

Overall, we couldn’t have been more pleased.  After months of waiting and hoping for Peter to turn the corner, it felt good to be taking action.  In my heart I’d always known something was askew with Peter and the escalating turmoil our family endured over the last several weeks solidified my resolve to seek help.  When I confessed to our new case manager, a can-do woman with curly red hair who was also an adoptive mother, that I thought we were struggling with attachment issues, she immediately wrote down the name and number of Sue D’Aversa.  “Contact her,” she said.  “You won’t be disappointed.  People up there,” she laughed warmly, “they call her the Adoption Whisperer.”

“Up there” turned out to be Albany, which is the Capitol of New York and over 60 miles from our home, but I didn’t care.  After what seemed like months of Pat dragging his feet when it came to facing Peter’s problems, it was a relief to hear him agree so readily to yet another intervention.  Although I’ve since lost a good deal of my naivete, there was a time when I greeted each newly identified specialist, therapist or intervention with great anticipation, as if wellbeing and normalcy for our son was only a single appointment, drive, or office door away.

So on that cool, sunny morning in June when Pat and I discussed making the appointment as we pushed the kids on the swings of their newly installed jungle gym, I felt hopeful.  Sophie was thriving, growing stronger, wittier and sharper every day, Peter finally was getting help, and I was certain the social worker named Sue was about to throw Pat and me a priceless lifeline.

By the time our appointment rolled around, the children looked healthier than we ever imagined possible.  They no longer had translucent-colored complexions, their skin now radiated health thanks to nutritious food and plenty of warm sunshine.  Their hair had thickened up and grown shiny too, though Sophie still didn’t have enough for pigtails and had to settle instead for a Pebbles bow on the top of her head.  Although Peter’s growth would not skyrocket for a few more months, Sophie was growing by leaps and bounds.  By that summer she was still tiny for her age but had outgrown four sizes of clothes and just as many if not more shoe sizes.

We went together as a family the first time we drove to Albany to meet Sue, who apparently had a true gift for healing adopted children.  She shared office space with other counselors on the floor and there was a large cabinet in the waiting room that Sophie soon discovered was filled with books, toys and puzzles.  For whatever reason I felt the need to dress the children as though they were attending some sort of socialite tea party, and I felt a little self-conscious about this as they plunged into the heap of grubby toys in their brand new, overly dressy outfits.

Within a few minutes Sue opened her door and beckoned us inside.  She introduced herself and I liked her immediately.  It was clear she was a no-thrills, middle-aged woman with an open face and an interesting, hopefully insightful, perspective.  I would also soon learn that she possesses a great sense of humor and loves to laugh as much as I do.  Her office was arranged like a comfortable living room, with a sofa on one side and two chairs with a table on the other.  Multiple toy boxes were placed against the walls and Kleenex boxes were conveniently available on every table.  Either someone had bad allergies or there were a lot of tears shed in that room.  Still conflicted and confused about my feelings for Peter, I hoped and prayed she had an unusually allergic clientele.

As soon as we sat down and she spent a few minutes talking to the kids, she asked us the inevitable question.  “So, tell me why you’re here?”  Pat and I just stared at each other, dumbfounded.  We were at a loss when it came to discussing our feelings toward our son.  We could barely express our complicated feelings to one another much less to a stranger we’d met only five minutes earlier.  When it became clear we needed to be walked through this initial process, she instead suggested we tell her about our adoption story, how Sophie and Peter came into our lives, and what our initial impressions were of each.  That we could handle, barely.

We gulped, almost in unison, as we wordlessly determined who would speak first.  Our year of intensive attachment therapy had begun.

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March 13, 2010

September 23, 2007 Journal Entry and Chapter 19

In Pursuit of Minnows (Late Summer 2007)

September 23, 2007.  Peter wet himself for the third day in a row.  Yesterday, while catching minnows at a nearby creek, he peed his pants while boring his gaze into Pat’s mother and us.  It seems whenever we let negative behaviors like wetting pass without consequence, Peter interprets our inaction as weakness to be exploited.  For the last two mornings we ignored the wetting on the advice of our new Red Hook pediatrician.  She is a sensible, well-meaning woman, but like most doctors we encounter, lacks experience with post-institutionalized children.  She can’t imagine Peter pees with purpose and so she offers a plausible explanation.  “Maybe his sleep pattern has changed.  It happens at this age,” she tells us.  “He may be overtired and not listening to his signals.”  We’re so desperate to believe one of Peter’s problems is “typical” that we take her advice and try ignoring the problem.  I recall this conversation vividly as I confront Peter about his renewed interest in extramural peeing.  I tell him I’m aware he’s wetting because he went without consequence the last two days.  The kind doctor no doubt would reproach me for saying so, but I know my child.  He scoffs and hides his face so I can’t see him relish in the moment, his smirk re-enforcing the terrible truth Pat and I have known for some time:  we often are at war with our son.  The Normal Frontal Lobes (us) versus The Flying Neurons (him).  When pushed to speak about the reason he’s begun wetting again, he looks up and says, “I like to upset you.”  “Does it ever upset you?” I ask.  “No, I like it.”  He walks off without looking back and crouches behind the kitchen island.  I soon hear him crying.  I peek over and find him sobbing with great shuttering waves of shame, knees drawn up to his chin as he rocks, repeating to himself how sorry he is, that he’ll try harder.  I start crying too.  “Come here,” I say, picking him up.  I expect limp, dead weight but he wraps his arms tightly around me, squeezing my neck for dear life.  I think he understands, for the moment, that he’s his own worst enemy.  Peter can be the boy who wants carte blanche to disrupt our family at every turn as well as the boy who desperately needs and craves love.  There is an epic, primal war waging inside him.  The stakes are so high it dwarfs the battle he’s waging against us.  If I think too much about which boy will prevail, which of our Peters will emerge to face us as his body and mind edge toward manhood, I’ll lose what’s left of my mind.  And so I squeeze him back and surrender my fear in favor of this rare, connected moment.

Chapter 19:  Something’s Not Right

Somewhere around the six-month mark, Pat and I realized denial was no longer a rational pursuit.  By this time Peter was attending preschool three mornings a week and I was grateful for the break.  It gave me the opportunity to focus on Sophie without the distraction of Peter’s increasingly more difficult presence.  During this time we still clung unsteadily to the “give it time” theory, continuing to hope that Peter’s odd behaviors would eventually resolve.  Clinging to this possibility made about as much sense as running a marathon with one shoe but we weren’t yet ready to face reality.  It didn’t help that everyone we turned to, doctors, preschool teachers, family, and friends, urged us to practice patience.  He needed time to heal, acquire language, and discover a sense of self.

Another reason we didn’t move sooner was that although his puzzling behaviors and social interactions were worrisome, they didn’t scream out for attention.  The bed soiling hadn’t stopped but it hadn’t escalated either.  He was acquiring language, but at a slower rate than Sophie, who was chattering happily and nonstop.  Peter still only had a few dozen words but more importantly, he had a habit of stringing them together in a way that didn’t quite seem right.  For instance, he called the bathtub “bath tonight” and referred to the sink as a “drink of water.”  It was easy though to dismiss these language mistakes, especially since he was still transitioning from Russian to English.

His preschool teachers were happy to have him even though when pressed, they confessed that he kept to himself and wouldn’t join in with the other children.  He also didn’t follow directions, even simple ones.  I remember these kind-hearted women almost whispering these confessions, as though it were impolite to discuss a recently adopted child’s lack of progress.  “But he’s no problem,” they’d say, grabbing my hand warmly.  “And he’s cute as a button . . . those eyes!”

Tiny and Wearing Madras (Peter's spring preschool recital, May 2005)

Then there was the sitting down behavior, a precursor to the tantrums and rages that still pepper our daily lives.  Whenever Peter was upset, because he didn’t want to do something that was asked of him, like stop a preferred activity, or leave before he was ready, he’d drop to the floor.  It was the strangest thing.  He’d sit with his legs straight out and his hands resting rigidly in his lap, silent as the night and staring blankly ahead.  And he wouldn’t budge.  One of us would have to hoist him, one-armed, and carry him like an unwieldy mannequin.

These were warning signs, certainly, but except for the bed soiling, they felt manageable.  Peter was a little boy who was obviously having trouble adjusting and who was withdrawn and reliant on maladaptive behaviors to express his needs and frustrations.  We accepted this and tried our best to embrace the adage that patience and love were the greatest of all healers.

But then the other shoe fell off.  About six months after the adoptions, Peter abruptly abandoned his passive approach to living in our house.  Almost as though an alarm bell sounded inside the deepest recesses of his brain, our son awoke to the sounds of his own primal screams.  His demons became loosed and consequently, our family’s course, laid from hopes, dreams, and a pinch of folly, took a turn toward a future we never expected or imagined.

One early Sunday morning when the bulbs had bloomed but the grass was still brown, Peter ran into our room and uncharacteristically jumped in bed.  Despite the darkness that still blanketed the day, the house was awake from the rumbling of a springtime storm.  Sophie had already beaten him to the punch and was lodged deep under the covers, hiding from both the thunder and the high-pitched howl of the wind whistling through the newly leaved trees.  Peter wiggled his way between us in search of a spot where he too could disappear.  Despite the children’s fear, I was grateful for the banging storm, for the intimate opportunity it offered.

Because it was still mostly dark, I didn’t notice anything unusual when Peter stretched his arm out from under the quilt.  But I quickly smelled the odor.  “What the . . .,” I gasped while Pat fumbled for the lamp switch.  To our horror, the light revealed what we already suspected.  Poop, coming from Peter.  And it wasn’t a simple accident.  He was covered in feces.  He had taken his own waste and smeared it all over his body and pajamas and into his hair.  He was completely covered in poop.

Sophie started crying as soon as she realized what happened and this caused Peter to run screaming from the room.  The place on the bed where he lay was fouled and so were Sophie and I.  Because Pat was unaffected, he sprung into action while I remained stunned and on the verge of getting sick.  “Get him,” I groaned as I fought back the urge to vomit.  Lifting Sophie gingerly from the bed, as if she were injured, I carried her into the bathroom.  Stripping her pajamas in the tub, I scrubbed her delicate skin under water as hot as she could stand until the germs fell off and her sobs subsided.  After wrapping her in a towel, I handed her over to Pat as he long-armed Peter toward me.

Early Spring 2007

It was a morning I’ll never forget.  By early afternoon the house was sanitized, as were the human occupants.  I remember sitting at the breakfast bar, sipping strong coffee while I stared numbly at the rivulets forming and reforming on the windowpanes.  I couldn’t manage much more.  Peter was busy rifling through our junk mail, stacking the flyers and advertisements into a big messy pile, and Sophie was engrossed with her Little People farm.  Every once in a while the blare of Cock-a-Doodle-Doo would rouse me from my thoughts and I’d turn and smile toward our daughter.  Surfing the Internet from his perch on the coach, Pat too would look up and smile briefly.  We had so much to talk about and were biding time until we had some privacy.

Before we put Peter down for his nap, we explained very simply that he would be spanked if he ever did that again.  Unsure whether he knew the English word, we gently but firmly demonstrated the spanking process.  “Peter know,” he nodded solemnly.  “Peter know.”  I don’t know whether he knew or not but two days later he delivered an encore performance.  Enough was enough.  We’d been tolerating the “poop on one end and pee on the other” bed routine for six months.  Every possible solution we tried to stop the behavior, including putting a potty in his room, either backfired or didn’t help.  Not charts, not rewards, not consequences.  And he had upped the ante substantially.

So as promised, the second time around we spanked him.  It felt like a defeat, certainly.  During all the years I dreamed of becoming a mother, my imagination never took me to a place where I resorted to spanking a toddler I’d brought home from Russia only six months earlier.  But I also never dreamed of parenting a child who willingly covered himself in feces.  I was at a loss, and so was Pat.

It’s not that I think children should never be spanked or that any parent who chooses to spank is a borderline abuser.  But spanking our kids?  That was different.  Sophie and Peter had been neglected and half-starved and who’s to say they hadn’t been physically or even sexually abused?  We just didn’t know.  But we also felt like we had no other choice.   Perhaps the worst part of all is that the spanking worked.  He never did it again.  As we would soon discover, Peter experiences some kind of psychic release when he’s thoroughly punished, whether spanked or disciplined in some other way, which by far is the more usual scenario.  It’s almost as though he’s hit rock bottom but doesn’t realize it until a strong punishment intercedes to alert him.  Only then can he pull himself together and resurface.

Looking back on this phase of our lives, I now understand that Peter wasn’t able to hold himself together, that the strain of keeping his behavior and impulses in check was too great for him to bear any longer.  The honeymoon was over.  Maybe by that point he felt secure enough in our home to shed the perfect robot routine.  Conversely, maybe the sudden change in course signaled his inability to cope with the demands and nuances of family life.  To this day I’m unsure which is the more probable explanation or whether there’s even a third or fourth consideration that would shed light on the shift that occurred.

 

March 2005

Unfortunately, the feces smearing incidents, though perhaps the pinnacle acts of his rapid descent, weren’t the only issues with which we found ourselves faced.  During this period he also became destructive, ripping wallpaper from the walls in the middle of the night and pulling toys apart piece by piece.  “Truck broke,” he’d complain, showing me the various pieces he plucked apart.  “Garbage time.”  Whenever Pat or I tried making him acknowledge his role, so that he understood his actions caused the toy to break rather than random fate, he would scream red-faced, “Peter no break.  Truck broke!”

 

It was in this manner that I gradually came to understand that Peter had trouble making logical connections.  For a long time I thought he was just being stubborn, that like most young children he didn’t want to admit his mistakes or his role in a particular misdeed.  But over a period of time I realized that Peter constantly overlooked, even angrily denied, the most obvious cause and effect relationships.  Twisting the arms of sunglasses will cause them to break.  Ripping the wallpaper will bring about a consequence.  There’s no dessert when dinner is left uneaten.  The doorbell always signals a visitor at the front door (as opposed to another door).  Dishes will break when dropped.  Peter simply didn’t register these kinds of unshakeable facts.

Not only was his inability to make logical connections a serious source of concern, it made disciplining difficult because Peter doesn’t learn from his mistakes.  More likely than not, he’s destined to repeat tomorrow and the next day the mistake he made today.  Maybe on some level he understood this, or at least sensed on a basic level that he lacked the tools to navigate the complex world of family and expectations.  Maybe that’s why he opted to take no risks or make even the simplest of choices during those first months home.

May 2007

In the orphanage there were no choices.  Peter was never left alone or unattended, not even at night.  Fifteen other children slept with him and a caregiver stood watch, or at least remained minimally conscious, throughout the night.  Meals were eaten in groups with caregivers combing the aisles to help or maintain order.  Toys were kept high on shelves and to the extent they were brought down, they weren’t scattered across the floor so children could pick and choose.  Children were given one toy at a time.  Use it or lose it.  In the orphanage Peter was told when to potty, when to play, when to go outside, when to eat, when to shower, when to sleep, when to be quiet and when it was okay to make noise.  It’s the kind of system where independent thought is not encouraged and certainly not required, and where a lack of independence or self-regulation might actually make yielding to the rules easier.

But in a home, he was free, at least relatively.  Free to explore his environment, free to make certain choices, such as what he wanted for snack, and free to express his thoughts.  The same held true for Sophie but the difference was that where Sophie learned from her environment and adapted, Peter became more bewildered and frightened.  He didn’t have the tools.

Once he began showing his frustration, whether by smearing feces, ripping wallpaper or launching rocks at Sophie’s head, other telltale signs emerged.  For instance, once he realized there was plenty to eat, always, and that he would never go hungry, he began using food as a weapon.  He often refused to eat dinner.  Keeping a single piece of food in his mouth, whether a pea or a bite of chicken, he would chew and chew but never swallow.  Over time, his refusal of food evolved into a more active assault where he made himself throw up at the table, especially in restaurants.  Logical consequences had zero effect.  He either never made the connection or he didn’t care.  Sometimes Pat and I still catch ourselves uselessly debating which is the more prevalent of Peter’s states of mind, can’t or won’t.  It’s impossible to say because the two are inextricably intertwined.

The behavioral regression we began witnessing during this time was further complicated by what seemed like developmental backtracking.  His rate of language acquisition reached a sort of plateau and he began exhibiting unusual physical movements.  He repeated himself constantly, particularly his name, and always in a loud, monotone voice.  Busily engaged in the “crashing, screaming, falling game,” he might for example, hear someone ask for the time.  Without awareness he’d parrot the question, “Is it 6 yet?”  He also could spin on the middle of the living room rug for thirty minutes straight, oblivious to any action around him.  He regularly walked on his toes and flapped his hands.  Sometimes he rolled his head so violently he looked like a ragdoll drunk on a rollercoaster.

By May, we knew something was seriously wrong.  Despite varied opinions and our own desire to wish them away, Peter’s behaviors could no longer be ignored or casually explained.  Instead of lying awake wondering who Peter was and how spooky it felt to live with a child we barely knew, our sleep soon became interrupted by an entirely new brand of torment.  Namely, whether our son was missing a few key ingredients, components essential for normal childhood development.  Afraid to waste any more time, I made appointments at Vassar Brothers Hospital to have his hearing and speech evaluated and at our local hospital to have him seen by occupational and physical therapists.

The wait and see game was officially over.  Peter had let us know, loud and clear, that time would not heal his wounds.  Frightened as we were, at least we didn’t miss this last desperate scream for help.


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March 2, 2010

September 20, 2007 Journal Entry and Chapter 18

Late Summer (2007)

September 20, 2007.  Peter raided our bathroom in the middle of the night.  Pat found loose pills and open bottles.  Somehow he figured a way to bypass our safety precautions.  In the past, his midnight adventures revolved around smearing the walls with lotion or shampoo and pouring Pat’s aftershave down the drain.  This morning he tearfully admits the mischief, which I take as a good sign because like most kids his age, his strong inclination is to lie.  He is still upset when I pick him up from school.  His sister is also having a hard day though I nearly miss learning why.  Sophie wanted to share the adoption book we made last summer with her class but felt too shy when the time came.  I try listening to her on the drive home but get distracted when Peter throws a soccer ball into the front seat.  It grazes my head before bouncing to the floor.  I pull over immediately to address the behavior and start to reprimand Sophie for interrupting.  Then I realize what she’s saying.  She’s trying to tell me she didn’t show the book because she was afraid the other kids would tease her for being adopted.  I’m so angry with Peter that I nearly miss the confused, timid tone in her voice.  My daughter, who until now has soared through her short life with us with enviable confidence, is becoming aware of differences.  We have always celebrated the difference in how our family was formed but at five, Sophie for the first time is venturing beyond the protective confines of home, where other perspectives abound, and where differences aren’t always celebrated.  I spend so much time searching for a solution or even a temporary salve that might soothe Peter’s tortured soul that I’m failing to focus sufficiently on my other child’s entirely rational fears and needs.  Sophie can be helped, really helped, and yet concern for Peter, a concern bordering at times on terror, preempts all else.  This has to change.  Although it would be wrong to give up on Peter, the real crime would be surrendering Sophie’s chance at emotional wellness in furtherance of his.  As part of this family she’ll always be more than just a bystander when it comes to Peter’s troubles, but I have to minimize the collateral damage.  I must learn to listen to Sophie even with soccer balls whirling overhead.

Chapter 18:  Is That You, Santa Claus?

I never think back to our first six months home without feeling flooded by memories of ambivalence, confusion, joy, and relief, a mixed bag of feelings that don’t typically complement each other.  On the one hand, the children were home, they were ours, and we were a family whose members were learning to adjust to the cadences and demands of one another.  I was quickly becoming a competent parent and Pat was re-discovering some tricks of the fatherhood trade he had shelved more than a decade earlier.  We were on the path toward becoming a whole, healthy family and should have been content and satiated with the bounty of our blessings.

Our Adoption Announcement & Christmas Card (2004)

And there were blessings.  When Sophie first got home her legs were so spindly and weak she couldn’t climb the stairs or pull herself onto the couch.  If she tried walking without assistance on a path with even a slight slope, she’d wobble and fall, exhibiting what Dr. Aronson called “poor motor planning.”  Pat and I called it “poor bruise prevention,” often joking that Sophie’s skin tone, especially during those first months home, was a mottled black and blue.  All elbows and knees, our precious bundle of occupational hazard doled out as many bruises as she suffered.

Dr. Aronson strongly encouraged us to have her evaluated through our county’s Early Intervention program, reminding us that institutionalized children lose one month of development for every three months they spend in an orphanage.  Sophie’s motor skills were so delayed, and her rickets so severe, that she didn’t think we should risk waiting.  However, in the three weeks it took to arrange for the Early Intervention therapists to come to our home, her health and ambulation improved tenfold.  In fact, she’d caught up.  She didn’t qualify for occupational or physical therapy services, and astonishingly, her English language skills, both in terms of what she was able to speak and understand, were age appropriate.

At the time, Dr. Aronson suggested we have Peter evaluated too, but because his motor skills were more developed than Sophie’s, she thought giving him time to adjust was the greater priority.  She felt the bed soiling incidents likely were attributable to stress, including stress that was possibly derived from fear over leaving his room to use the bathroom.  She suggested we put a potty near his bed and let the issue resolve on its own, without giving the unwanted behavior negative attention.  This was important, she advised, because orphanage children, even those as young as Peter, quickly learn that certain unacceptable behaviors will cause even the most immune and indifferent caregiver to perk up and pay attention.  In adoption speak, these are called maladaptive behaviors, maladaptive because they may help a child survive in an institutional environment, but they interfere with bonding and general integration into normal family life.

Her line of reasoning made sense to us, and it helped assuage our worries over what we considered disturbing behavior.  Plus, as pleased as we were with Sophie’s progress, we were also encouraged by the positive changes in Peter.  To begin, he grew so quickly I had to replace clothes and shoes every month.  By the end of our first year home, he had grown ten inches and gained twelve pounds.  During a checkup, I remember the nurse apologizing for the “mistake” in his chart when she wrote his new measurements down.  After listening to me explain that he really had grown that much, that it was “catch-up growth” and not an error in transcription, she just stared at me, mouth agape.

During this time he learned how to pedal his tricycle like a champ, discovered the simplistic beauty of Thomas the Tank Engine, experienced the joy of sledding, and poured with devotion through endless picture books.  He used the potty (peesit!) regularly and never had any accidents, although we still struggled with the bed soiling trick.  The bald patches and wispy hair began to thicken and grow with regular haircuts and plenty of healthy food.   Physically, he was thriving.

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

But in other ways, he wasn’t.  Week after endless week Pat and I waited for Peter’s personality to emerge, for the memory of the adoption trauma to subside enough so he could show us who he was.  That’s what we thought, and what we told ourselves for a very long time: that he was traumatized, shell-shocked, but with enough patience, love, and understanding, he would learn to trust and become less guarded, less inhibited.

As weeks turned into months though, our largely unspoken fears failed to subside while the nervous glances Pat and I exchanged over breakfast began to increase.  We could never quite put our finger on it, but there’s no doubt we felt the oddity, the inherent lack of synchronicity, settling like fog over our new young son.  We kept waiting for the boy hidden inside the boy to emerge, but he hadn’t, at least not yet.  There was a distant, detached, almost hollow quality about his demeanor, as though the boy we saw, the one we called Peter, was shielding someone else entirely; a child who was darker, more complicated, and definitely hurt.

And there were more than just the uneasy, hard to define feelings.  His overt behaviors were odd too.  For example, he wouldn’t look us directly in the eye, though he happily smiled for the camera.  Whenever he sat, he kept his legs straight out in front, just as he had in Russia, and he had this way of stomping his way across the floor, knees locked.  He was as rigid and inflexible as the action figures we encouraged him to play with – he only seemed to bend in a few key places.  He also wasn’t speaking much, though this was lower on our list of concerns because I’d read online that international adoptees must first lose their native language before their brain can acclimatize to learning a new language.

Play was another area of concern.  Peter could occupy himself for hours with a solitary car or wooden block.  At first this seemed like a good thing because I could get all kinds of chores done around the house, but it wasn’t.  He wasn’t exploring his environment, the way Sophie was, or interacting with his toys in any purposeful way.  Early on, Pat dubbed the phrase “the crashing, screaming, falling” game to describe Peter’s favorite activity, then and now.  No matter what’s at hand, whether car, penny or cereal bowl, he’ll lift it over his head, look at the object with growing trepidation, then lower it quickly in a simulated crash, all the while screaming “awwwwwgh.”  Although there’s nothing unusual about a boy amusing himself this way, Peter will do it all day long until someone interrupts the ritual and makes him stop.  That’s the unusual part.

We understand that now but at the time we gave this strange fixation, along with all the other odd behaviors, the benefit of the doubt.  Peter didn’t know how to play, he was living in the shadow of Sophie’s big personality, he was a naturally wistful child, or maybe he was reacting negatively to the potent mix of medications he took on a daily basis.  Both Sophie and Peter had to take Isoniazid (INH) for nine months to kill their latent TB infections as well as multiple rounds of medication to eradicate giardia from their intestinal tracts.  Perhaps, we told ourselves, the combination of these powerful drugs was causing side effects that impacted his behavior and mood.

When we began confessing some of our concerns to Peter’s pediatrician, at least the more objective ones, he suggested we enroll him in preschool.  “He needs socialization,” he told us.  “He doesn’t know how to interact in a normal environment – he’s going to have to be taught.”   So that’s what we did.  After a week or two spent researching our options, we enrolled him in a wonderful little nursery school whose teachers and administrators were thrilled to have him.  Peter wasn’t their first internationally adopted preschooler, but he was their “freshest” in the sense that he hadn’t been home very long.  He would start in January, right after the holidays.  As for Sophie, I enrolled us in a Mommy and Me class that met at the same school every Tuesday morning.  She would get to meet and socialize with other two-year-olds and I would get to know their moms.

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

Having made that decision, Pat and I did our best to shelve our worries and resume the business of becoming a family as well as adjusting to our new relationship as married parents.  Pat had an easier time with this than I because my list of worries rose as high as a mountain where his resembled more of a hill.  But I tried, and in large part, I succeeded.  Bringing home two toddlers at once from an orphanage in Russia is a formidable undertaking, one we clearly hadn’t appreciated sufficiently at the time but that was becoming abundantly clear with each new day.  Pat and I were exhausted.  As in dead tired, asleep on our feet, is today Tuesday or could it be Friday, and how many years before they leave for college tired.

But when the units were nearly up, the children bathed and cozy in their fleece pajamas and perched on our bed watching Corduroy or listening to Goodnight Moon, I allowed my thoughts to drift toward Pat.  Childless for many years, we had long ago discovered a beautiful rhythm to our relationship that could be sustained indefinitely with love, attention, humor, and respect.  Although becoming parents to Sophie and Peter hasn’t challenged the depth of our commitment, it has altered the composition somewhat.  For instance, patience, a quality rarely called upon before the kids, has become a key player in our successful alliance, as has perseverance and humility.

Once we recovered from the first exhausting month or two, when we’d fall into bed, flat on our backs and still fully clothed, approximately three minutes after we kissed the children goodnight, Pat and I in earnest began reclaiming ourselves and our marriage, at least somewhat.  By three months into the adoptions, we were capable of staying awake long enough, at least on most nights, to watch a movie or participate in a conversation lasting more than five minutes.  Little by little we became less like deer in the headlight and more like the human beings we once resembled.

Although our waistlines suffered, our grammar deteriorated, our love life cooled, my cooking abilities declined, and we both sloughed a good ten points off our IQs, we were adjusting.  Our first Thanksgiving came and went without much fanfare because we opted not to travel to the mountain house in North Carolina, where my siblings meet for the holiday.  We had a quiet dinner at home, just the four of us, but with all the usual trimmings.  Afterwards we watched the geese practice their landings on the fallow cornfield across the road.  Sophie and Peter had no real sense of the holiday, but like every other day, they absorbed the experience eagerly, each in their own way.  Sophie made a place for her Cabbage Patch doll at the table, carefully removing a booster seat in the kitchen to help prop her up while Peter greedily inhaled the luxurious smells of Thanksgiving dinner, making sure to stay nearby so as not to miss out.

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

Our first Christmas was memorable for all the reasons first Christmases are always memorable.  Sophie and Peter whizzed through the holidays with wide-eyed stares and disbelief, their innocent joy and unaffected sense of wonderment spreading like a contagion to anyone lucky enough to have mingled with them.  Everything they saw, everything they touched, heard or tasted was so new and captivating that they became wholly mesmerized: Christmas lights, the tree, jolly music, sparkly decorations, scores of sugary treats.  Nothing was too small or insignificant to explore and appreciate.  A bowl of candy canes at the Dry Cleaner’s produced the same level of enchanted euphoria as the grand spectacle of Santa and his Elves at the mall.  We made batch after messy batch of holiday cookies with overnight guests while dancing in a floury, sprinkle-strewn mess to Chipmunk Christmas music.

Between gifts and books we bought ourselves, we must have acquired 90% of the children’s holiday books ever written, from Corduroy’s Christmas and Madeleine’s Christmas to Father Frost and Twas the Night Before Christmas.  We read them religiously every night even though we knew the children couldn’t decipher most of what they were hearing.  But as Christmas drew near, Sophie could sing a good many of the words to Rudolph the Red-Nosed Reindeer and was able to ask Santa, when the opportunity arose, for a brand new kukla (doll).

The mystery of the dancing Santa

Peter participated actively in most of the festivities and I smiled with relief to see his normally doleful eyes sparkle in a way I hadn’t imagined possible.  Pat, who was always willing to yield to the deceiving caress of Peter’s apparent wellness, was more convinced than ever that time and love would heal.  Christmas came and went that year without snow on the ground.  Pat gave me a Lladro figure of a little girl to match the figurine of the boy I’d bought in Moscow on the way home from our first trip.  He catches me by surprise sometimes, that husband of mine, and that Christmas morning I found myself crying, tears of joy and blessing mixed with fading melancholy for Ben, the baby I had begun allowing myself to forget.  But it was okay, and surely Pat knew that.  The Lladro figurine wasn’t Ben, it was Peter, and after I opened my present and felt the cool delicate porcelain against my skin, Pat lifted it gently and placed it next to the other on our shelf.  Our family was complete.

I look back on the thousands of photos I took of Sophie and Peter over the course of our first holiday season and wonder where that bright-eyed boy is now.  Peter was at his best then, as though he’d been granted a temporary reprieve from the demons and disasters that play havoc with his mind.  He loved the presents, adored the attention, and had his hand in a plate of cookies every time I turned around.   As Pat and I watched our sleepy children play in front of the crackling fire toward sundown, I began to trust, really trust, that Peter would emerge from whatever protective cloak he had constructed, and that one day soon, he would be okay.

Peter's 1st Christmas (Dec. 2004)

Slumped with Sophie against the nylon wall of their new play tent, talking on a toy phone, his new cowboy hat perched cockeyed over one brow, Peter seemed a beautifully typical 3-year-old boy.  As usual, Sophie controlled the scene, barking weary instructions to her new brother with what had become their secret, indecipherable language, some sort of scaled down Russian with a sprinkling of mispronounced English words.  Not only was he listening, he was interacting, and playing.  Not with Sophie’s characteristic display of complex thought and imagination, but he was holding his own.

Pat and I fell asleep that night watching an old Judy Garland Christmas Special aired on PBS.  Her voice gravelly and strained from years of alcohol abuse, we watched as she floated around her living room with Mel Torme and her three children singing carols and reminiscing in black and white about Christmases past.  As nutty as it seems, I found myself searching our television screen for glimpses of her children’s philtrums, including Liza Minelli’s.  Did she drink while she was pregnant?  Could her children be alcohol exposed?  I don’t know.  I never caught a good glimpse because the film was grainy and I was too tired to keep pursuing such a pointless line of thought.  But what I did notice was Judy Garland’s eyes, the ever searching, soulful way they could seduce you into believing even the gayest Christmas carol was meant to induce melancholy.

She had Peter’s eyes, our new son who was asleep down the hall and who had been momentarily distracted by the gaiety of Christmas.  I saw that instantly.  But unlike Judy Garland, whose life can be dissected and studied on the Internet, I knew nothing of Peter’s past, the little boy whose dark, plaintive stare can convey a life’s worth of sadness, hurt, and disappointment.


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February 20, 2010

September 19, 2007 Journal Entry and Chapter 17

Sophie and Peter (Summer 2005)

September 19, 2007.  Peter and Sophie went to the dentist today.  They both have hypoplastic teeth, Peter’s two permanent teeth are coming in paper thin and nearly devoid of enamel, and Sophie is congenitally missing two permanent teeth on the bottom.  Dental problems are common with Russian adoptees, resulting from some combination of poor nutrition and rickets, overexposure to antibiotics, and inutero alcohol and/or drug exposure.  So this is really no surprise though it’s not welcome news.  Some form of dental insurance will need to be part of our future.  Having someone poke around the inside of his mouth with sharp instruments and whirring contraptions is not Peter’s idea of a fun way to spend the morning.  And so I braced today for the worst.  But it didn’t happen.  He was as cool as a cucumber and instead, Sophie proved the crankpot.  There’s a lesson in this for Pat and me.  Sometimes we’re so on edge about what may happen in a given circumstance that we forget to give Peter the benefit of the doubt and more importantly, the gift of our confidence.  He frequently surprises us with his abilities and tolerances but it’s the catastrophes that lurk in our memories and too often drive our expectations.  To reward Peter’s even keel, and perhaps to help me remember to be more optimistic next time, I take the kids for ice cream on the way home.  Probably not what I should be doing for two kids with lousy dental reports, but what the heck.  Sophie’s face and shirt, covered in dripping chocolate mess, juxtaposed against Peter’s meticulously clean face (he carefully eats his strawberry ice cream in a way that ensures minimal food to skin contact), makes me smile.  Eating ice cream in the middle of a late summer day, when one rightly should be in school, is an equal opportunity pleasure.

Chapter 17:  The Parade Marches By

Pat and I decided not to tell Patty or Mark about that first bed-soiling incident.  We were horrified of course, and worried that something was terribly wrong, but we were also confused.  I wanted Patty’s take on Peter’s behaviors, but this discovery was in a different category altogether.  My siblings knew even less than we did about the complicated psycho-social issues involved in international adoption, and we were cognizant of not wanting to set off alarm bells that could not be later unrung.  But why would a child do that?  What did it signify?  What was Peter trying to tell us?  None of it made sense.  If he needed to relieve himself, why didn’t he just go in the Pullup he wore for safe measure, or better yet, use the toilet?  There was not a speck of mess on either his pajamas or Pullup.  Whatever the reason, one thing was clear: his actions were deliberate.

After Pat and I cleaned what we could and stripped the bed, we tried talking to him, which was an exercise in futility, of course.  Peter didn’t speak English and we didn’t speak Russian.  But we did know a few key words: nyet (no), da (yes), peesit (pee) and kakut (poop), which enabled us to say something along the lines of  “nyet peesit, nyet kakut, nyet in bed (and then we pointed to the bed).  Peter just stared at us blankly, picked up a familiar book, and walked out, repeating “nyet, nyet” as he began clomping down the stairs.  I walked him back up and into the bathroom, where I pointed at the toilet and implored, “da peesit, da kakut.”  He nodded.  Da da.

Mark left that afternoon and Patty flew back to Atlanta two days later.  Although I can’t imagine asking any of my siblings to keep their distance, I know now it was a mistake to have visitors, especially as many as we welcomed, those first weeks and months home.  Having Patty and Mark with us those first days was a tremendous comfort, especially for me, but it wasn’t best for Sophie and Peter.  They needed time to adjust to their new environment – language, diet, smells, routines, clothes, weather, a home; they also needed time to become accustomed to us, their new caregivers.  They’d been taught in the orphanage to call us Mama and Papa, but they had no reference from which to attach meaning to those words.   They were coveted titles we would have to earn.

Over the next two months we ran a bed and breakfast for an impressive number of family and friends.  After my sister left, my brother’s wife Paula arrived to take over the helm.  She wasn’t working at the time and was able to stay 5 or 6 days.  Her presence was incredibly welcomed and helpful.  She taught me about cutting grapes in half, as well as how to introduce new foods, clip wiggly toe and fingernails, buy shoes for toddler feet, cut juice with water, and even assemble an outside Little Tikes jungle gym.

Little Tikes Assembly Success (Nov. 2004)

And like Patty and Mark, she has an amazing sense of humor, an ability to bring levity and laughter into the mix of genuine challenge.

Aunt Paula (Nov. 2004)

In fact, she’s the one who devised the unit system, to which we all still fondly refer.  Somewhere around 10 days into the adoptions, Pat and I began looking terribly ragged, primarily because we were losing the battle for control of the premises.  The children’s needs and activity levels were eons beyond what we anticipated; not only were we struggling to keep pace, we were losing ground.  It’s not that we didn’t count on their being busy, we knew they were toddlers, we just failed to estimate the extent of their frenzy.  Russian orphanages may be called Baby Homes, but they don’t look like homes, and they aren’t run like homes.  Consequently, Sophie and Peter arrived with no understanding of what family meant and with no experience to help them safely navigate either the hidden or avert dangers present in all homes.  For instance, neither of them knew that stoves are hot, couches are for sitting, electrical outlets are dangerous, fireplaces aren’t for hiding, refrigerators are cold, washing machines make noise but aren’t dangerous, bookshelves aren’t ladders, toilets aren’t just for flushing, drawers pop out when tugged, and most knobs and dials turn something on.

They were blank slates on greased-up wheels.  Thank goodness Paula suggested the unit system to help us through the day.  One thing we were successful in doing right off the bat was establishing a wake/sleep schedule.  I’m not sure how we did this, but I do know our will to succeed was fueled by some brand of instinctual desperation.  We were exhausted and would not survive without rest.  So the children went to bed at 7 p.m. and woke, most mornings, by 7 a.m.  That meant there were twelve waking “Rooskie” hours per day, and Paula suggested we divide the time into half hour units, which equates to 24 units a day.  One unit taken up with breakfast, one with lunch, three to four with nap, 1 with bath time, and so on.  Not only was this incremental approach great fun, “One more unit to go,” or “Hey, if you keep the kids up late, you’re gonna owe me a unit tomorrow,” it also helped preserve our tenuous sanity.

Buoyed from the help of my siblings and sister-in-law, and armed with the unit system to fool us into thinking what we’d done to our lives was survivable, Pat and I began to fall into some semblance of a schedule.  Except that is, until our next round of visitors arrived, with presents, cakes, hugs, kisses and loads of heartfelt enthusiasm, and we’d have to start from scratch again.  My other brother Lee, friends from Atlanta, Pat’s daughter Jenny and her husband, Patty again with her teenager children, Mark again with the rest of his family, my grown nephew and his wife, and then in masse, the rest of Pat’s family.  It was wonderful, exciting, and comforting for Pat and I to be showered with so much love and support, and yet this extended period of celebration really did nothing more than prolong what was already a difficult adjustment period for Sophie and Peter.

Sophie with her cousin Haley (Dec. 2004)

I remember when Pat’s clan came to visit, in masse.  At least I had the presence of mind to know that eight or so strangers showing up at the house would overwhelm the kids, but there was nothing I could do.  They were excited to meet Sophie and Peter, and we were anxious for the visit to go well, to prove that our decision to adopt was correct, that our decision to start what for Pat was a second family was not destined for failure, heartache or division.  His family is fiercely protective of him and they’d always been reticent about our plans to start a family.  After countless years of being lost in his own grief over the death of his two sons and the failure of his marriage, and almost paralyzed with fear over how those events would shape his surviving daughter, he had emerged into life again.  He and I were so happy when we first met and throughout our first childless years of marriage.  I understand now that his family was worried, if not terrified, that we had gone too far, had moved too fast, and mostly, had taken on more, in terms of the children, than he ever should have been made to handle.   Just as Pat was getting his footing back, we decided to bring home two busy and demanding toddlers capable of shaking the earth off its very axis.

But I believed in Pat, and still do, with the bold confidence of the newcomer who, unlike the people standing in our doorway, never had to shoulder the burden of walking beside him through those dark, lonely years.  I believed him when he said he wanted to give fatherhood another try and I clung to this belief in the days and weeks after we first brought the children home.  I especially clung to this construct as I welcomed Pat’s family into our home on that late autumn afternoon.  I remember thinking the first snow was near because I could feel the heavy air as it swirled around our property, plucking without apology the last few remaining leaves from their branches.

They were all smiles and hugs as Peter jumped into arms and laps as casually as though he had spent every day of his life with my husband’s family.  It was a worrisome pattern Pat and I had begun to recognize but rarely voice beyond the privacy of our bedroom, and one that we still combat today.  Peter displays indiscriminate friendliness, meaning he’ll seek affection, when he needs it, with expert adroitness.  The boy who screamed if I tried holding him more than a minute, who’d tilt his head away from my body as though we were opposing magnets, nonetheless knew how to charm and win the affection of Pat’s family, and all the other visitors who revolved through our door those first two months home.  Even then, I remember thinking his over-friendliness toward people he barely knew really was like that of an addict willing to trade actual happiness for momentary, fleeting euphoria.  To this day, Peter favors the quick fix of a stranger’s praise or affection over lasting intimacy and closeness.

Pat and I barely understood what we were witnessing during this critical time period, but we knew there was something wrong.  In my mind, the visit by Pat’s family cemented my concern.  Sophie was so overwhelmed by the number of good-intentioned family members fawning over her that she retreated to the bathroom and refused to come out.  She didn’t speak the language, people she didn’t know were asking for hugs and kisses, and she became overwhelmed.  In fact, she would not come out of the bathroom until everyone left, two hours later.  Although I was disappointed that Pat’s family would have to meet the “real Sophie” another time, her behavior was understandable, and developmentally normal.  But Peter was holding court, and not in a happy, healthy way, either.  He bounced from lap to lap, briefly hugging and squeezing necks and repeating paduski as he worked his way around the room like a spinning top.

But with the exception of the bed-soiling incident, which unfortunately evolved into a chronic problem, and the dichotomy of Peter’s over-affection toward visitors but under-responsiveness with us, our initial transition was easy.  Sophie delighted in every way and with every move, her spunk, cognitive prowess, and resiliency evident to all who met her.  And Peter was compliant.  Other than the bizarre behavior regarding his bed soiling, he was incredibly easy.  Though we didn’t understand it, Pat and I weren’t even sure the bed soiling was deliberate conduct.  This was partly because Peter never did anything else wrong.  He was a picky eater and aloof, he repeated the few words he knew, whether in Russian or English, with annoying consistency, and he was still stiff and robotic in his manner and physical gait, but he also was completely obedient.  He never tested a single boundary we established and would become visibly upset whenever Sophie did, which was often.

Pat and Peter (Nov. 2004)

Pat and Peter (Nov. 2004)

But it was also like he was a ghost, or maybe an empty shell.  One night when the units were up and we lay exhausted in bed, Pat and I confessed that neither of us had any idea who Peter was.  He was our son, he was living in our house, we were meeting his needs, but he either lacked or would not reveal any of the personal traits, habits, or preferences that distinguish a person, even a 3-year old person, as an individual.  It was an uneasy, hollow feeling we shared, and we talked at great length as to the reasons we felt that way.  Were we doing something wrong?  Letting Sophie steal too much of the show?  Our questions were as endless as they were unanswerable.  We only knew we had no inkling into the heart or soul of the little boy we named Peter, a child who needed and deserved parents, and to whom we had committed to love and nurture the rest of our lives.

Other than the hundreds of mistakes we made during those first weeks home, and the uneasy feelings we’d begun to accumulate about Peter’s odd behavior and almost surreal submission, the visit into the city to see Dr. Aronson also remains prominent in my memory.  We had taken the children to our local pediatrician, Roger Green, in the first days we were home so that he could make sure we weren’t overlooking any urgent problems.  Knowing we planned to have the children fully evaluated by Dr. Aronson, he graciously agreed to wait for her workups and reports and then implement any care or interventions she recommended.

Although Dr. Green, who also is an adoptive parent, withheld his initial impressions at the time, he later shared that when he first met the children, his immediate reaction was that Sophie was in dire shape.  Grossly underweight, nearly bald and the size of a 10 month old, he thought her more physically frail and medically fragile than Peter, who despite his short stature, had a certain robust quality.

Sophie watching TV (Dec. 2004)

We would eventually exchange knowing smiles over the irony of those first impressions as Sophie grew stronger and livelier with every passing month while Peter’s clinical and psycho-social presentation grew more troubling and perplexing.  I couldn’t help but recall, and in many ways recoil over, what Dr. Aronson said to Pat and me during the days we agonized over the baby Ben: you can heal the body, but the brain’s a whole different ballgame.

In fact, when we brought the children to see Dr. Aronson, she repeated this mantra, but in the context of reassurance.  Sophie would heal.  We would make her well and strong with the basic ingredients of parenting: food, love, nurture, and attention.  Her head circumference was good and she showed no signs of alcohol exposure, either physical signs or cognitive patterns.  Peter did have telltale signs of FAS, as her personal inspection revealed, but as she wrote in his report, “only time will tell.”  His weight was good and so was his head circumference.  He was incredibly short, a finding she labeled  “psycho-social drawfism,” but she felt this would resolve in time, and it did.  Blood work revealed they both suffered from rickets, which is caused by a lack of vitamin D (which is found in both milk and sunlight), they were both infected with giardia, and they both tested positive for TB.

Dec. 2004

We weren’t exactly happy with the news, but we weren’t shocked either.  Lots of orphanage kids have these diagnoses, and as for the TB, a lung x-ray would hopefully reveal they had been exposed but not actively infected.  I filed the possible FAS news news away in the same part of my brain as I had filed the apprehensions I’d felt upon first meeting Peter in Russia.  We were moving forward, he was ours, and there was no going back.  I spent the rest of our time in Dr. Aronson’s office relishing in the excitement of being new parents, of having taken this journey with her for nearly a year, and the triumph and excitement of having her meet our children face to face, in flesh and blood. She had helped us weather many storms during our tumultuous passage toward parenthood, and she would continue to guide us in the years to come. “They’re here,” I felt like saying.  “They’re real and they’re ours!”

Even though I knew she met parents with their newly adopted children on a frequent if not daily basis, she shared our joy and excitement genuinely, with open heart and reverent respect for the incredible milestone our visit represented.  As we left her office, with Sophie and Peter irritable and still howling over having been probed and stuck with needles, she yelled to us over the din, her wild gray hair flying as she sped to catch us.  “Don’t forget their vaccination schedules!”

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February 2, 2010

September 10, 2007 Journal Entry and Chapter 14

October 2006

September 10, 2007.  I lay awake wondering how long we’ll be able to keep Peter safely home with us.  My thoughts race in the quiet hours before dawn, when worries and fears amplify beyond ordinary bounds.  Our son lies and steals and sometimes destroys with an appetite that belies his tender age.  The latest is that after ten days he finally confessed to throwing Sophie’s prized birthday presents in the trash.  I bought replacements to surprise her but Peter wound up the more surprised.  Looking like he’d seen a ghost, and making what lawyers call a statement against interest, he stared at the toys and shouted, “But they gone away in the garbage!”  Sophie is too often the object of Peter’s resentments, and though I’m glad he was caught in this particular deceit, I worry that nothing will change.  He seems organically incapable of learning from his mistakes.  I’m mindful of the time he hurled a fist-sized stone at close range, striking her on the temple with deliberate aim.  He was restive and angry the remainder of that day, blaming Sophie, incredibly, for the injury he caused as he watched me ice the swelling knot on her head.  He has a fantastical ability, when ensnared, to recast himself as the victim, the misunderstood innocent who should never bear blame.  I’m tired of the lecturing, the picture drawing, the social stories, the role-playing, the disciplining, the resort to yelling and the cycle that begins anew when none of the latter works.  To a large extent, Peter is right.  He is a victim.  How can he be held accountable if his brain won’t allow him to learn from his mistakes?  Who did this to him?  Was his biological mother a teenage binge drinker or had she graduated to a more steady intoxication?  What other wrongs has Peter suffered, wrongs so horrible that his psyche is imbedded, indelibly, with feelings of mistrust, contempt, and at times, unchecked rage?  Alcohol exposure alone can’t account for all that’s skewed inside his brain.  My damaged child holds me hostage, just as Russia itself holds him in the iron-fisted, immutable bonds of alcohol damage and institutional neglect.  Escape isn’t possible.  I belong to Peter and he to me.  And so I continue to love him, knowing full well that love alone may not be enough.  For my daughter’s sake, I must remember that Peter acts on uncensored impulses, some of which can be meant to harm.  Lest I forget, Sophie gives me her unicorn to sleep with tonight, assuring me as we kiss sweet dreams that its magic horn will keep me safe.

Chapter 14:  Adoption Day

My parents were married on October 25, 1948, in St. Petersburg, Florida.  They remained for the most part happy and in love for the next 46 years.  On October 25, 1994, the first time my mother spent her anniversary as a widow, my niece Haley was born.  A day destined to aggravate an open, grieving wound transformed into a celebration of family and possibility restored.  The fact this squawking baby resembled my mother and would later become the apple of her eye was another blessing that with time would joyfully reveal itself.   On October 25, 2004, three and a half years after my mother’s death, Pat and I began our family in a colorless courtroom in Birobidzhan, Russia.  For my family, this date has always resonated with hope, celebration and new beginnings.  I never doubted it would be different for Pat and me, and so despite our being halfway around the world, I awoke that morning feeling the enveloping presence of family, their warmth, comfort and companionship a welcoming contrast to the bleakness of our surroundings.

Birobidzhan (Oct. 2004)

My greatest hope, both then and now, was that we could in turn bestow this gift, this sense of belonging and place in line, to Peter and Sophie.  So as I dressed that morning, rehearsing answers in my mind to questions about my suitability or desire to parent, a sense of calm emerged.  I realized that Peter and Sophie were already a part of our family and just waiting to go home.  They felt as much a part of me as the memories of my brother singing White Wedding at our reception, or the churning sensation of riding in the backward-facing seat of my mother’s station wagon, even the autumn afternoon in Tallahassee that I learned my father had terminal lung cancer.  These children were already woven into the fabric of who I was, and who I might one day become.

I clung to this realization like a rudder to help steady me through the next several hours.  At the appointed time, Tamara arrived and drove us a mile or two down the main road to the courthouse, which was distinguishable from any other building in Birobidzhan only in that it enjoyed a more official-looking façade and a clearly marked entryway.  As with other buildings we encountered, whether official or otherwise, the concrete on the stairs was disintegrating and the handrails offered a minefield of splinters just waiting for purchase.  Inside, a number of blown-out light bulbs created a dappled glow to the otherwise décor-less halls.  Tamara led us around two or three corners and then asked us to take a seat on a bench next to the courtroom door.  She was clearly not worried about the impending hear.  Despite what I had read and watched about the topsy-turvy nature of Russian adoption proceedings, how judge’s can and do make unexpected, even arbitrary and devastating decisions, the vibe that day was matter-of-fact and therefore strangely reassuring. We eventually were invited in and took our seats on either side of Tamara in the front of the courtroom.  Two female doctors wearing white coats and one other orphanage staff member sat directly behind us.  A stenographer was present too.  We recognized the one doctor because she was the woman who had taken us around to meet the three boys at the end of our first trip.  Through the whole torturous process, she had treated us with kindness and compassion.  It felt good to have her there.

October 2004

Unlike the rest of the building, the courtroom was sparkling clean and brightly lit.  Except for the peculiar jail cell that was located to the left of the judge’s bench, I found it completely ordinary.  Tamara explained that defendants must sit in locked cages during their trials.  In Russia, it seems the presumption of guilt is a difficult hurdle to overcome.  The lawyer in me was still contemplating the obvious differences in our legal systems when the bailiff walked in and directed us in Russian to stand for the judge as she walked in and took her seat behind the bench.  She was a plain and sturdily built woman in her fifties, and it was clear she orchestrate these proceedings in her sleep.  An unceremonious rap of her gavel and the hearing was underway.

The orphanage representative read into the record the case histories of first Sophie and then Peter: their birth histories, social circumstances and the reasons they became wards of the state and were unsuitable for domestic adoption.  Even though I knew this was part of the Russian adoption proceedings, the whispered translation of these dire reports, the extent of poverty and deprivation that our children had endured, the defects of mind or body officially alleged, was difficult to endure.  This was true even though I knew the sole reason the speaker was making the case, that Peter and Sophie were of no value to the Russian people, was so they might lead the kinds of lives she dared not wish even for her own children.

The judge then asked Pat to stand and approach the bench.  Pat answered soberly in response to a number of questions and then I stood and repeated the process.  How could we give two needy children the individual attention they each required?  What was the state of our finances, our views on education?  Did we have proper support to help us through what would undoubtedly be a difficult transition?

After that, the judge asked me to describe Sophie in my own words.  Amazing, inquisitive, beautiful, mischievous, headstrong, smart, funny and enthralling.  I said all these things and more.  “And Peter?” she asked.  I held my breath for a moment and stared at my shoes.  The moment of truth had arrived.  I didn’t know whether the judge was aware of the circumstances that brought us to Peter or was on board with the relaxation of procedures that was clearly occurring on our behalf, but I didn’t want to lie.  I didn’t want the start of our family to begin with fabrication and deceit.

“I don’t know him too well, yet,” I said.   “We came to Russia the first time to meet Sophie and another baby who turned out to be very ill.  We had to say no to him and after we got home, our agency told us about Peter.  I hope you already know this.”  My heart thumped inside my chest and I couldn’t bear to meet Pat’s gaze.  I could see the judge rifling through paperwork and I was afraid to keep on speaking.  After a torturous minute, the judge looked up, nodded gravely, and waved at me to continue.  “He won’t come near me unless I’m feeding him.  He seems to like my husband.  I think he’s afraid, which I understand.  He’ll come around.  He’s beautiful and we want him.  I want him.”

And then she asked me to sit down.  I was shaky but holding my own until I felt Pat’s physical presence, and then the tears began.  He has this profoundly kind way of absorbing my pain, taking it wordlessly as his own, without fanfare or complaint, so that my burden is lessened.  To this day I honestly don’t know whether those tears came from the enormity of the moment or the awareness of how precious my life with Pat is.

Tears of worry and relief soon turned into tears of genuine laughter when the three orphanage women stood up at the judge’s request and began describing Sophie’s personality.  “There is no one else like her,” Tamara translated.  “She is naughty, very naughty,” one of them said.  “The mama and papa must not be afraid to discipline her!”
And with that suppressed waves of giggles spilled forth from all three women, their hands reflexively and in unison rising to cover their mouths.  “We are sorry,” they sputtered in tandem.  “There is something special about this child.  She’s a good girl.  A very good girl.”

The hearing part of the proceedings ended on that note and the judge excused herself for deliberations.  The mood in the courtroom remained light.  I was curious about why the judge hadn’t asked the orphanage staff about Peter, but having already said more than what was probably prudent, I decided to keep my mouth shut.   Tamara kept us occupied during the ten minute or so wait by discussing our afternoon plans with the children and how we intended to celebrate.  Because Sophie and Peter were too young to participate in the adoption decision, they had stayed behind at the orphanage.  She knew we would be anxious to see them.

The three of us spoke in hushed tones, Pat and I instinctively assuming the quiet cadence of Tamara’s manner.  She reassured me that my honesty about Peter had not been a mistake and that all was well.  I took comfort in her words despite the fact that the emotion in her eyes betrayed her soothing tone.  Early during our first visit Pat and I had guessed there was a deep and penetrating sorrow inside Tamara that her eyes could never quite conceal and that had nothing to do with us.  Though I barely understood it, I came to recognize this melancholic trait in the faces and expressions of many Russians, Peter included.

Before long the bailiff reappeared and we were anxiously on our feet again, watching the judge as she briskly walked, head bowed, toward her place behind the bench.  The stenographer shuffled some papers and then gave a slight nod toward the judge, which must have been her cue to proceed.

“Mary Evelyn Greene and Patrick John LoBrutto,” she said, in halting but clear English. “The married couple residing in Kingston, New York, and who are citizens of the United States of America?  You are now the legal parents and guardians of the minors known as . . .”

And with that, the judge stood up, walked around the bench and over to where we were standing, and gave me what may be the most hearty, memorable, and unanticipated hug of my life.

Pat’s and my quest to adopt two orphaned children was finally over, but my journey toward becoming a mother had only just begun.

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January 25, 2010

Prologue

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

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

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

Our Water Babies (Fall 2006)

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Introductory Note

Baby Home, Birobidzhan, Russia (Oct. 2004)

When Rain Hurts is the story of how our Russian adopted son Peter came into our lives, the series of events that led us there, and my successful journey toward loving him, while accepting and adjusting to the fact that I will never completely heal him. Peter suffers from Fetal Alcohol Syndrome, Mild Autism, Seizures, BiPolar Disorder, Post-Traumatic Stress Disorder, Attachment Disorder and suspected Mitochondrial Disease. He is also, on most days, our beautiful and loving boy.

Through journal entries, I attempt to demonstrate how love can flourish in the most hostile environments, if nourished with compassion, humor and humility.  These journal entries, and the narrative that accompanies them, aren’t a memoir so much as an exploration of the transcendence toward peace that one can experience in life-altering situations once hope is chosen above despair, and acceptance over resignation.  This project is about the growth that occurs through the examination of grief, the adjustment of dreams, and the acknowledgement of one’s own capacity.

I hope this blog has interest and relevance to readers who have adopted or are considering adoption, as well as those who have suffered loss through illness, trauma, death or disappointment.

I begin by posting journal entries starting in the summer of 2007, when our son was turning 6.  Each journal entry is followed by a chapter, which tells the narrative story of our adoption journey.  I am also including more recent journal entries, which can be found under “pages”, on the right-hand column of this blog.  I haven’t yet determined how they’ll fit into the overall book concept; they may end up replacing the earlier entries. I hope to be finished with the entire manuscript, which is 3/4s complete, by well, who knows?  Sooner rather than later, I hope.

I undertook this project because I felt demoralized after reading the plethora of adoption- and autism-related books on the market. Most if not all portray a family who struggles with their child’s difficulty at first, but who ultimately learns to embrace the problem and become enriched because of it.  Reading these accounts made me feel inadequate, as a mother and as a human being.  I love my child, fiercely in fact, but hate the disabilities that plague his future and pepper our daily lives with genuine chaos.  I want my child to be whole but I will love him every day of my life no matter how damaged or battered he remains or becomes.  This project seeks to explore these feelings. Adoption isn’t always easy and adopting an alcohol exposed child carries with it inherent booby traps that simply cannot be overcome by love, faith, medication or any other kind of intervention.  I know because I’ve tried.  What works is blood, sweat, and tears, a healthy dose of humor, a barrel full of patience, and the wisdom to know when the zenith’s been reached; when its time to let go and let be.

Thank you in advance for taking this journey with my family and me.  I came to this occupation  of “part-time writer” out of what I felt was necessity.  By training and passion, I’m also an attorney who has spent 13 years with the USEPA enforcing environmental laws that help ensure clean water, air, and land, and more recently, I’ve begun teaching environmental law and policy at the undergraduate, graduate, and law school levels.  I’m 40-something, married to the most wonderful man on the planet, have more pets than I care to divulge, and together we do our best to raise our two children, whom we love and adore but who definitely give us a run for our money.

Mary Greene

Mills Mansion, Staatsburg, NY (Jan 2010)

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