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.  

Advertisements

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.

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.

add to del.icio.us : Add to Blinkslist : add to furl : Digg it : add to ma.gnolia : Stumble It! : add to simpy : seed the vine : : : TailRank : post to facebook

February 7, 2010

September 14, 2007 Journal Entry and Chapter 15

 

 

 

 

 

 

 

 

 

 

 

 

 

Summer 2006

September 14, 2007.   I just read a news article about a sparsely populated region near the Volga River that is giving away free cars, money, refrigerators and other prizes to couples who procreate now and give birth on June 12, Russia Day.  Workers who signed up for this contest, now in its third year, were given a half day off on September 12 to boost their chances of winning.  President Putin claims Russia’s falling birthrate is its most acute national problem and he applauds the creative genius of the regional governor.   I have a problem with this.  Quite a few, in fact.  Foremost has to do with the host of overcrowded orphanages generously scattered across the country, institutions in such poor repair they are crumbling on their own foundations.  In late 2004, when we adopted, over 600 children under age 4 were living in the baby home in Birobidzhan, a city of approximately 220,000 people.  Extrapolating this figure to age 16, the age of emancipation, means there must be roughly 2,500 institutionalized children in Biro at any given time.  There is such a shortage of jobs, food, and services that parents give up their children because they know even the skeletally staffed orphanages can better provide for them.  Alcoholism is so prevalent in Russia that health officials don’t ask pregnant women about their drinking habits because they don’t want to compile the sobering statistics.  What percentage of Russian children born on or around June 12 will end up alcohol exposed, neglected, malnourished, learning disabled, and residing in an orphanage?  I’m not sure the free car is worth the price.  My son often doesn’t know right from wrong, has severe memory deficits, may never understand the relationship between cause and effect, is learning disabled, lacks impulse control, is devoid of judgment, suffers from multiple physical disabilities, and has a whopping 60% statistical chance of being arrested between the ages of 12 and 21.  Sophie is doing well but even she carries telltale, perhaps permanent, signs of her early institutionalization.  I will always love Russia because my children are Russian.  But I still wish Peter was whole, so he could grow with the potential God intended rather than stumble through life impaired and disoriented, a tragic symbol of everything wrong in his country of birth.  Perhaps, just perhaps, the national crises that seed children like my son should be addressed before Russia gives too many more free cars and refrigerators away.

 

Chapter 15:  We’re Home (Almost)

Lunch, homemade cake and a beaming Galina awaited our new family when we arrived back at the apartment after the hearing.  But despite the festivities, picking up the children, seeing them for the first time since they were “ours”, I remember this time as quiet and peaceful.  Sophie had claimed every fiber of my being the instant our eyes met in August and although my commitment to Peter was more contemporary, he already was mine too.  I had made a resolute decision about my new son, having sealed our fates together during a restive night less than 48 hours earlier.  Turning back was neither an option nor desire.  Pat and I were happy, certainly, but we were mostly relieved.  We had many more hoops to jump through before going home, including several days in Moscow, but from this point forward none of our decisions, fears, misplaced words or misunderstood actions could in any meaningful way jeopardize the formation of our family.  We had reached the finish line.  Peter and Sophie were ours.

But it didn’t quite feel that way at first.  For one thing, there was no room for the children to stay at Galina’s so they remained at the orphanage and on the same strict schedule until the morning we picked them up at 4:30 am for the drive to the Khabarovsk Airport.  The night of the adoptions I was keenly aware of how incorrect it felt to lay in bed with Pat knowing our children were still being made to fall asleep amidst more than a dozen other toddlers, most of whom, Peter and Sophie included, had never known the comfort of being kissed goodnight.

16 beds for Sophie’s group of 16 (Biro, Aug. 2004)

The authorities waved the post-adoption ten-day residency requirement, which enabled us to leave Birobidzhan once the children’s Russian passports, new birth certificates and adoption certificates were ready.  Ten days in the region post-adoption were suddenly compressed into two, causing us to become a flurry of activity.  We wanted to make a contribution to the orphanage, and had intended to donate cash, but the women in the white coats told us that money had to be declared and that most would be eroded by taxes and “less official” fees. They instead suggested we buy snowsuits, jackets, mittens, boots, and hats at the store because these items could not be easily tracked.  Tamara took us and we bought more than we could afford.  We nearly emptied out the entire children’s section, which was smaller than our kitchen.  We also bought brightly painted chairs that were locally made and that we’d seen in abundance at the orphanage as keepsakes for Peter and Sophie.  Other than the grocery store, it was the only store in town and therefore the only place to buy clothes, shoes, books, toys, bedding, household appliances, cosmetics or baby supplies.   Even though more than 200,000 people live in Birobidzhan, we were its only customers that day.

Our next stop was the farmer’s market, which was busy and boisterous.  Pat kept whispering for me to keep a firm hold on my purse because he didn’t like the vibe coming from a scattering of young men who patrolled the aisles with heads bent and arms shoved deep into heavy canvas jackets.  He needn’t have told me.  His body language changes so abruptly in these instances, reverting with a flash to his Brooklyn-bred street smarts, that I read his thoughts with a single glance.  We quickly bought a bushel of bananas big enough for King Kong to enjoy, at least 80 bananas, and as much other fruit as the three of us could carry.  We took great pleasure in distributing our bounty when we returned, to the mostly nonverbal toddlers who nonetheless had mastered how to say “Mama” and “Papa” and who still clamored for our touch and attention.  It was both wonderful and profoundly sad to watch these children’s faces light up and their mouths water over the prospect of something as simple as a piece of fruit.  There was nothing they took for granted.

Peter eating with his group (Biro, Oct. 2004)

It was also funny and wonderful to marvel over the way Sophie began exhibiting proprietary behavior in our presence.  To this day we don’t know exactly what she was saying, but whenever any of the children in her group showed us more than casual interest, she would furrow her brow and wag her finger in the direction of the small offender.  She would then fire off a maelstrom of verbal warnings so caustic that any children brave enough to have remained in the wings scattered in retreat, immediately.  With clutched fist and steadfast determination, she also had no trouble establishing ownership over the pink little gingham pillow with our picture in the sleeve.  She carried it everywhere she went and according to her caregivers, whose eyes sparkled with the telling, refused to relinquish possession no matter what the circumstances, including using the potty.  She behaved like a crazed old Babushka rather than a barely two-year-old child.  We loved her for it, and still do.  Immensely.

Sophie eating soup (Biro, Aug. 2004)

That night we sat in the easy company of Galina, Bogdan, and Sergei, another grandson who stopped in frequently, and watched their favorite Russian soap opera, which had become our custom.  There was nothing else to do.  We couldn’t visit the children and roaming the pitch-black streets of Birobidzhan after dark, which by late October was somewhere around 3:00 p.m., was not a safe option.  We had brought books and a portable chess set but were too exhausted and mentally depleted by this juncture of our trip to focus on anything that required even minimal mental acuity.  The wardrobe in the soap reminded Pat of 1974 Staten Island on a Saturday night.  We knew it was time to leave when we earnestly began looking forward to the next episode, checking our watches to make sure we didn’t miss the kickoff.

Peter stopped screaming at me about the time we were ready to say goodbye to Tamara, Galina and the orphanage staff.  He even begrudgingly allowed me to sit near him and interact with the blocks and plastic truck we bought at the store and left behind for the orphanage.  But I still couldn’t interact much with him.  If I picked him up and sat him near me, he’d bounce up and run over to Pat, his short little legs moving faster than what seemed anatomically possible.  But he didn’t scream.  He merely grunted.  I interpreted this transition as progress and cheerfully continued my strategy of inching my way toward intimacy, or at least casual contact, often with food in hand as collateral.

Sophie too began loosening up around this time.  Galina’s living room could be closed off with French Doors and we took advantage of this design to contain our new cubs.  They had never been in a home before and for Sophie, everything was worthy of exploration: the furniture, the kitchen, the television, Galina’s fish tank, her knick-knacks, the light sockets.  The toilet topped the list of curiosities though, as she had never seen one.  The orphanage used pots lined up in rows for toileting, one child next to the other.  The entire contraption, especially the flushing mechanism, fascinated her and it wasn’t long before we realized she didn’t have to really go peesit every fifteen minutes.

Potty training, orphanage style, with Sophie is on left & Peter Barnes next to her (Biro, Oct. 2004)

But even confined to a single room, Sophie was a challenge.  What became obvious quickly was that she had long ago mastered the art of playful defiance.  She understood the limits we had imposed, she just didn’t agree with them.  And the mischief in her eyes, the twinkling intelligence that belied her tender age, was difficult to ignore and even more difficult to curtail.  We would soon learn that we weren’t the only ones under her spell.  People fell victim to her charms wherever we went, and still do.

What wasn’t so obvious at the time, but now stands out as clearly as fireflies against a night sky, was Peter’s complete lack of curiosity about his new environment.  I was chasing Sophie around like a madwoman, convinced her frenetic activity would result in instant and tragic death before we ever got home, but Peter barely budged.  All he wanted to do was sit with his blocks or look at a book with Pat.  But this behavior didn’t strike us as necessarily strange back then.  After all, we were strangers, we didn’t speak Russian, and we were planning to whisk him away from the only home he ever knew.  We thought he was scared and tentative, which I’m sure he was.  Though we’ve seen vast improvement, we understand now that Peter tends to behave this way no matter what the circumstance or environment.  He’s uncomfortable navigating the contours of new experience.  Rather than struggle to integrate, he retreats into the comforting spaces of his own thoughts or the rituals of repetitive play.  It took years of intensive intervention to coax him from this mindset and even today, constant vigilance is required to keep him from withdrawing.

From left: Sergei, Galina & Bogdan (Biro, Oct. 2004)

When it was time to leave Birobidzhan, we thanked and hugged Galina, promising to send pictures and updates once we were home.  I don’t remember whether we went to bed that night but I’m guessing we didn’t.  Tamara took us to the orphanage at 4:30 a.m., where the children were already bundled in their new clothes and jackets, standing with two women beneath the shelter and light of the entryway’s concrete overhang.  Since we knew we were leaving before dawn, we said our emotional goodbyes to the women at the orphanage the night before.  Two of Sophie’s caregivers had rattled off instructions for us to keep Sophie on schedule and content, tears overflowing while they competed to stroke her tiny back.  One of the doctors insisted we take a tube of cream to ease Peter’s itchy skin.  They were decent, basically kind people who were forced to look after Russia’s discarded babies under conditions of extreme poverty.  Although I was moved by their affection, I also was invigorated with the knowledge that Peter and Sophie were finished with orphanage life.  Peter had spent all but 5 of his 39 months in an institution and Sophie, who was 27 months old, had joined him before her first birthday.  They had served their time.

Goodbye orphanage (Biro, Nov. 2004)

Both children were dazed, confused and exhausted the entire bumpy trip to Khaboravsk.  Our driver dropped Tamara at her apartment on the way out of town and I watched her wave to us as we began our journey home.  Our translator, who in the process became our friend, was gone.  Until we reached Moscow, where Sergei awaited, we were on our own, relying on gestures and the few Russian words we had committed to memory as our only means of communication.  Sophie sat on my lap and Pat held Peter.  There was no room for car seats much less our luggage, which was tied to the roof with lengths of scratchy twine.  When he wasn’t dozing, Peter repeated his Russian name the entire ride while Sophie stared, unmoving, out the window.  Listening to the eerie rhythm of this cadence, the rise and fall of Gera Gera Gera against the clanging backdrop of the car, I worried whether our new son was trying to hold on, somehow, to his former life, even his very identity.  The idea made me shudder.

The plane ride from Khabarovsk to Moscow was uneventful, thanks to a young Russian girl who appropriated Peter, drawing and otherwise entertaining him for most of the flight.  Sophie stayed content as long as I kept the Goldfish and Cheerios flowing her way.  Neither of them slept during any portion of the 10-hour flight and by the time we arrived in Moscow, they’d been awake, except for momentary catnaps, for almost 24 hours.  Their bellies were full, they had their first lollipops – for take-off and landing, found the airplane ride exciting, and were uncharacteristically compliant for children their age.  But the poor babies also were dead on their feet.

Leaving Biro (Nov. 2004)

For me, the most challenging part of this segment of our slow progression east had to do with our flight’s five-hour delay and the prolonged agony this inconvenience caused.  Specifically, I had drank too much instant coffee at Galina’s in the middle of the night and desperately needed a bathroom break by the time we arrived at the Khabarobsk airport, which was somewhere around 8 a.m.  But I couldn’t figure out how to use the public toilets in the airport and I was unwilling to experiment.  The lavatory consisted of several holes in the ground surrounded by slippery filth.  Indented footprints flanked the sloping sides, apparently to coax hapless users like myself into the correct position.  I envisioned me sliding inexorably into the unspeakable abyss and then spending the next twelve hours living with the aftermath on my clothes, skin and hair.  No thank you.  Even if it meant keeping my legs crossed for 13 hours, which it did.

The four days we spent in Moscow were exciting, scary and in every way novel.  The Presidential Hotel is more than accommodating of newly adoptive parents and we were happy to find two cribs set up and ready to go when we opened the door to our room, which was really a suite.  It was the first night we would spend together as a family and I had a raging yeast infection, which for me, was a first.  I had ignored the mild symptoms that started to develop our last day in Birobidzhan.  With so many important things on my mind, and having no idea how bad this kind of problem could get, I simply dismissed the warning signs as an aggravating nuisance.  Boy was I wrong.  The culprit turned out to be the powerful antibiotics our doctor had us taking throughout the second trip, to stave off giardia and any other nasties.  By the time we reached the hotel room in Moscow, sleep-deprived and with two bewildered and exhausted toddlers in tow, I was desperate for intervention.  Pat was uneasy about me venturing into the Moscow night by myself, but there was no reasonable alternative.

Trying to explain to the women at the front desk the nature of my problem was about the funniest and most exasperating experience of my life.  The word yeast in Russian has no meaning unrelated to bread-making.  After many rounds of passing the dictionary and using gestures not suitable for polite company, a eureka moment finally occurred and they understood what I needed.  These otherwise stone-faced women giggled like schoolgirls as they wrote down the address of the nearest pharmacy and showed me on a map how to get there.  It was past midnight, I hadn’t slept in God knows how long, Pat was no doubt panicking in the hotel room by himself with the kids, and I had no choice but to venture into the Moscow night in search of over-the-counter feminine relief.

Luckily, the directions were good and I arrived at the pharmacy after a fifteen-minute walk.  Then I encountered the next hurdle: the pharmacist didn’t understand what I needed either, and unlike American drugstores, customers in Russia do not have direct access to nonprescription drugs.  Products are locked up and out of view.  So I started my ridiculous pantomime routine all over again.  Eventually a tall, elegantly dressed businessman walked in, saw me gesticulating like a crazed woman, and asked in fluent English if he could help.  Ordinarily I would not have pulled an innocent into such a private matter, but I was desperate.

“I need something for a yeast infection,” I said.  Luckily I was too exhausted and uncomfortable to worry too much about his embarrassment either.

“Uh, oh.  Well, yes, of course.  I can help with that.”  I thanked him for his kindness and apologized for the awkwardness of the situation.  He took my place at the counter and explained to the pharmacist what I needed.

I might have emerged from the store with some semblance of dignity intact if the humorless pharmacist hadn’t then decided to ask the man to translate the package directions.  He really was managing well until that point, but this taxed his Samaritan attitude well beyond the tipping point.  Bowing his head to review the instructions, he slowly looked up at me with what can only be described as horror.

“I simply cannot do this, Miss.  I am quite sorry.  But I cannot read these words to you.  I just cannot.”  His face was beet red and his eyes implored me to release him from this unbearable task.  He continued, “You can manage from here on, right Miss?  I’m sorry.  Goodnight and good luck.”  And with a slight bow and what I thought might be the click of his heels, he disappeared into the welcoming anonymity of the Moscow night.

When I entered the hotel lobby, with white paper bag in hand, I was greeted by the sounds of the reserved but jubilant desk clerks cheering my success.  I thanked them hastily and then raced to my room and waiting family.  Now the middle of the night, Peter and Sophie were still ambulating like Zombies on parade.  I was still working off the adrenalin boost fueled from the pharmacy adventure, but Pat was out of juice. I found him slumped like a rag doll in an armchair, supervising our children in a semi-conscious, unshaven and close to delirious state.

We spent the rest of that night with all the lights on and Peter thrashing between us in the big king sized bed.  He had screamed with terror every time we put him in the crib or attempted to dim a light, so we thought bringing him into bed with us would help.  We were wrong.  Sophie fell asleep in the crib after methodically rocking herself for 45 minutes in spite of the considerable racket.  Flat on her back with arms stretched toward the ceiling, Pat and I watched helplessly as she swung her body from left to right, the muscles in her neck taut and twisted.  She was not ready or willing to receive our comfort.

Sophie and Peter’s 1st night away from the orphanage (Moscow, Nov. 2004)

Despite how exhausted we were the next morning, the prospect of eating breakfast as a family held great appeal.  We watched in amazement as Sophie and Peter, regardless of the fatigue and trauma of the last 36 hours, ran with abandon down the long hall of our floor, falling, rolling and generally howling with delight.  From their expressions, we guessed they had never experienced any real sense of personal freedom before.  In fact, just like that first morning in the hall, Sophie and Peter would continue to react with complete and utter delight in response to the simplest pleasures for the entire first year they were home.  The gift of a balloon, for instance, brought shrieks of joy, as did the sight of hamburgers, balls, television, bananas, frogs, honey, open spaces, milk, grass, and even their double stroller.

The breakfast buffet at the Presidential provoked a truly unforgettable feeding frenzy.  Eggs, crepes, bacon, sausage, milk, orange juice, oatmeal, fruit, breakfast potatoes and French toast.  They devoured everything in sight and then lifted their plates for more.  Sophie ate three times as much as Peter, which is saying something because he ate more that morning than he’s ever eaten since.

Peter’s 1st breakfast at the hotel (Moscow, Nov. 2004)

The rest of our time in Moscow was spent getting mandatory medical exams for the children at a Russian clinic, making sure the U.S. Embassy processed their visas correctly, and generally tagging along with Sergei as he skillfully navigated the remaining post-adoption paper chase.  In between appointments we did some sightseeing and bought some incredibly expensive clothes for the children.  The clothes I picked out  prior to the adoptions, mostly 3Ts and 2Ts, hung from Peter and Sophie as loosely as potato sacks.  We wound up buying Peter a few outfits in size 18 months.  Sophie easily fit into size 12-month clothes.

Breakfast ecstasy (Moscow, Nov. 2004)

Three other memorable events happened while we were in Moscow.  The first had to do with bathing.  Russians shower, even their babies, because they feel bathing in a tub full of water is an unclean practice.   Sophie and Peter were so terrified of the water when we first put them in the tub, screaming like teenage victims in a horror flick, that I’m surprised someone on our floor didn’t call security.  But then in a last-ditch effort to salvage the experiment, I splashed my hand in the water and gently splashed their bodies.  Sophie paused for one second, considering the implications of this act, and then we watched with amazement as her features transformed and she surrendered, completely, to her childhood instincts.  Attack!  The ensuing water fight was a moment that will be forever imprinted on my brain.  Blood-curdling screams of terror became peels of laughter and Pat and I were drenched and covered in bubbles by the time we wrapped our two happy and clean toddlers in warm towels.  Bath time was never a problem again.

The next unforgettable moment occurred at a Moscow McDonald’s, where Sophie caused a considerable crowd to gather.  We ordered Happy Meals for the kids but they didn’t know what to do with them.  They ate their apples but their hamburgers went untouched.  Sergei tried to coax them into eating but they just stared blankly.  We finally gave up and began eating our own meals.  As soon as one of us lifted our burgers to our mouth, Sophie picked hers up, staring at it curiously.  It then occurred to us: they had never had a sandwich before.  They either didn’t know it was food (yes, I know, it was McDonald’s) or they didn’t know how to approach it.  So Pat picked up Sophie’s cheeseburger and helped her position her infant-sized hands on either side.  Then all three of us illustrated the chomping procedure, looking ridiculous I’m sure.  And that’s all it took, at least for Sophie.  Squeezing both sides of her cheeseburger so hard that bits of grizzly meat squished between her fingers, she took a single bite and paused.   Her eyes moved back and forth with measured deliberation and then an impish grin, one of her hallmark characteristics, slowly emerged. She ate the rest of her burger, which was nearly the size of her head, with such gusto and intensity that people began gathering around us in amazement.  Half act, half genuine enjoyment, she played to her audience like a seasoned professional, relishing all the while in the glow of the spotlight.  Though we never convinced Peter to eat anything else that day, Sophie had seen the face of God, and her name was American Cheeseburger.

Cheeseburger in Paradise (Hyde Park, NY, Dec. 2004)

To this day, Pat and I refer to the last noteworthy event as simply The Fight, which occurred in the late afternoon of our second full day in Moscow.  We were taking a well-deserved break in our room’s big, overstuffed chairs, watching contentedly as the children played and continued to explore their new environment.  Sophie played kitchen with her doll and the plastic food, dishes and pots we bought for her while clothes shopping in the fancy Moscow department store.  Peter spent his time stuffing everything he could into his new backpack: Duplo blocks, books, cars and trucks, hotel magazines, water bottles, action figures, and even wash clothes.  Nothing was too banal for inclusion. When finished, he’d hoist it onto his back, circle the perimeter of the room, dump the contents out, and then start the process anew.

Although Pat and I exchanged worried glances over Peter’s repetitive, ritualistic play, neither of us had the energy to intervene.  Instead, I asked whether Pat would get me a pillow from the couch to prop behind my back, which had begun to ache.  Both of us were unprepared for what happened next.  Peter stopped what he was doing, went over to the couch, and brought me the pillow.  He understood what we were saying!  What a remarkable moment!

Our joy and surprise over this revelation was soon dwarfed, however, by what began as a simple breach of toddler territory.  While praising Peter for his brilliance, Sophie seized the opportunity to snatch what had become a prized book from his otherwise closely guarded backpack.  Until that point, neither of them had paid the slightest attention to the other.  But all that changed when Peter discovered the missing item and in Sophie’s hand.  The boy who we’d begun to worry was completely passive suddenly exploded with a litany of verbal outbursts.  Sophie followed suit.  With her brow knit in consternation, and her fist shaking savagely in Peter’s direction, she came back with a barrage of her own.  The indecipherable argument continued, with both of them charging the other, fists drawn and chests puffed, for a considerable length of time.  Pat and I watched in stunned silence as this unforeseen drama unfolded.  To this day I don’t know whether we chose not to intervene because the fight wasn’t physical or because we were simply in shock.  Regardless, the chaos stopped as suddenly as it began.  Sophie and Peter had reached some sort of understanding.  Although far from kismet, they no longer ignored each other, and in ways small and large, began acting like the siblings their adoption papers declared them to be.

Overall, our time in Moscow was lovely.  The days were crisp and clear and we could see the children’s health improve on an almost hourly basis.  Sophie’s skin became less translucent, Peter’s angry red rashes began to subside, and the dark blue bags under their eyes diminished by the minute.  Breakfast continued to be a show worthy of charging admission, and running the length of the long halls a favorite daytime activity.  At night we’d read to them in the big king sized bed and then let them watch a Russian cartoon with the lights dimmed ever so slightly.  Peter never slept well in Moscow but at least the screaming lessened.

Sophie at the Presidential Hotel (Moscow, Nov. 2004)

In fact, the only real troubling part of our stay revolved around our children’s intestinal health.  Although we at first thought the change in diet was to blame, the frequency, volume and room-clearing odor made us rethink our diagnosis.  I frankly had never smelled anything so foul in my life, and it was coming from both of them.  But without additional symptoms, nausea, cramping, fever, or any other kind of distress, we decided the problem could wait until we got home.  Having already obtained their medical clearances, we didn’t want to jeopardize our departure date.

Peter at the hotel (Moscow, Nov. 2004)

With Sergei serving as our guide, translator and companion, we spent our last afternoon in Moscow exploring the city, which was both exciting and sad.  Moscow is every bit as alive and vibrant as New York City, Los Angeles or Boston, with all the noises, energy and pulsations, but there is a crucial difference.  The disparity between the wealthy Muscovites and the residents, not to mention the rest of the Russian citizenry, is abundantly apparent.  The ostentatious displays of wealth in Moscow make American vanities seem almost modest by comparison.  I found it difficult to reconcile the abject poverty my children had experienced with the incredible brand of nouveau riche consumerism on constant exhibit in the streets of Moscow.  I truly hope the country one day settles on an economic and social model that allows capitalism to flourish and wealth to accumulate, but in the presence of a healthy middle class, and without so much graft that basic human rights are overlooked.

I was never more aware of the depths of Russia’s troubles than when I stepped on the plane that would take us home.  Sophie and Peter had experienced unimaginable hardship in their first, most crucial years, and theirs were the faces I saw when I reflected on the failures of their birthplace.  Pat and I were confident we could change their health and living circumstances for the better.  What was less certain was the impact we’d have on their psyches, our ability to heal the damage to their developing brains and hearts, damage that was the result of neglect, abuse, and deprivation; the hopelessness, and in some ways, indifferences, of an entire people.

Bound for New York (Nov. 2004)

I said goodbye that morning to Russia, grateful for our children and poised for the adventures and struggles ahead.  I was ready to go home.  And I would not be looking back.

add to del.icio.us : Add to Blinkslist : add to furl : Digg it : add to ma.gnolia : Stumble It! : add to simpy : seed the vine : : : TailRank : post to facebook

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.

add to del.icio.us : Add to Blinkslist : add to furl : Digg it : add to ma.gnolia : Stumble It! : add to simpy : seed the vine : : : TailRank : post to facebook

%d bloggers like this: