June 8, 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 had started 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 he 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 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 has 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 the fear, the real fear, that he would not 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 do our best to 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 can learn to access more reliably.  And perhaps more importantly, 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 the events of his day unfold before me.  

May 5, 2013

Mudge Pond, Sharon CT (May 4, 2013)

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

January 23, 2013

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

November 7, 2012

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.

October 18, 2012

Fall 2005

October 18, 2012.  Peter sprained his ankle 10 days ago.  Green Chimneys has him running cross country, which is amazing – and a little unexpected, and he slipped on a rock.  He’s been inconsolable ever since.  When he was home last weekend, there was no obvious swelling or bruising, I honestly couldn’t tell there’d been any injury at all.  But Peter’s sensory system is way off.  Even the slightest assault sometimes causes exaggerated response, while at other times, serious assaults, like wasp stings, completely go unnoticed.  I have no doubt he twisted it, but I also have no doubt its something most kids would shake off.  Because its been bothering him, he wears a brace during the day and he’s not supposed to run or play sports for another week and a half.  It’s impossible to say whether these restrictions are necessary – he mostly only limps when someone reminds him of the injury, but I agree with Green Chimneys’ decision to err on the side of precaution.  Over the weekend, we took the kids to family day at the Haunted Horseman, a very popular Halloween attraction.  One Saturday each October, they transform the park from 10 to 3, making it appropriate, and enticing, for children.  There are games, face painting, pony rides, a bounce house, cotton candy, a “haunted” hayride and corn maze, and more.  The first time we brought the kids, they were 3 and 4 and my sister Patty was in town.  At the time, Peter seemed to love it.  The story of Ichabod Crane is acted out on the hayride and then the riders are dropped off at the corn maze, where they’re left to weave their way through only slightly ghoulish frights and sights.  We still joke about Sophie being afraid, when she was 3, of the person dressed as a cartoonish, kid-friendly version of Frankenstein.  When I tried explaining that there was a perfectly nice man hidden underneath, maybe even someone’s papa, she without hesitation exclaimed, “I don’t like the big papa!”  It’s been a favorite family memory ever since.  Although we couldn’t find the “Big Papa” this year, we did confront, over and over again, Peter’s ever-ballooning fears.  Amid toddlers darting around with balloons tied to their wrists, our 11-year old son had to be coaxed into participating.  He has this way of physically disappearing into himself when he’s scared or over-stimulated, which I’ve dubbed “turtling”.  He curls his back inward, dips his neck toward his chest, and strains his shoulders toward the middle.  Almost immediately upon walking through the entrance, his limp returned and he began turtling.  The costumed man greeting us – standing on stilts and brightly dressed as a pumpkin-headed scarecrow, sent him reeling.  I had no idea Peter would react so negatively to such a generally benign environment.  But we couldn’t just leave – Sophie had been looking forward to this for months and it’s only held one day during the year.  So instead, we played games like skeleton basketball and toilet paper toss, bought the kids cupcakes, and held Peter’s hand while we walked around.  After a while, he relaxed a little and I was able to talk about the need to take control of his fears and fight against letting inhospitable thoughts take over and hold him hostage.  He’s now able to listen to these discussions and tries very hard to implement any suggestions.  In the end, he made it through and I think he even had a good time.  Pat and I were proud of the effort and made sure he knew it.  We have to keep encouraging these treks into less predictable, more challenging environments, because now that he’s home every weekend, we can’t continue to keep him bubbled inside our home, which is what we were doing.  It’s not fair to Sophie and it’s not fair to us.  We don’t have and can’t afford babysitters at every turn.  Having him home every weekend is a step toward having him with us again fulltime, a kind of high-stakes litmus test for the future.  We always will need to be attuned to Peter’s needs, what he can and can’t handle, but at the same time, we can’t become slaves to them.  The challenge is finding the balance between Peter needing to live in our world and our needing to accommodate his.  Last night when I called the dorm, the young woman who answered the phone told me that he’d been crying and angry ever since school let out, and without apparent reason.  She thought maybe he was out of sorts because his ankle has sidelined him.  I didn’t want to argue with her – after all, she might be right, but Pat and I also know that our son’s moods can swing like a pendulum on a rollercoaster.  It’s one of his many challenges.  When he finally picked up the phone, I could hear him crying.  He tells me that he’s too tired to talk and is angry that I called.  This is not like our son – he depends on our nightly calls, and so its clear that he’s in a bad place.  There’s no talking to him when he’s like this, time is the only cure, and so I tell him not to worry, that I love him, and that I bet he’ll wake up in the morning feeling more like himself.  “Thank you, Mommy,” he says, and hangs up.  I’m a little surprised by the gruffness, but at the same time, I just have to smile.  Although I hate that he’s feeling so unsteady, I’m becoming increasingly confident that he’ll find his way back.  In this case, it seems that sprained ankles, lack of physical outlets, and scarecrows on stilts are just too much for one week.

September 19, 2012

September 15, 2012

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

September 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

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

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

June 9, 2012

Assateague Island, MD (Memorial Day Wknd 2012)

June 9, 2012.  Peter’s home this weekend and something curious has begun.  It’s happened a few times in the past month or two but it’s taken me a while to assimilate this new chapter in our relationship.  A few weeks ago at dinner he reminisced, with more than a dollop of good humor, how he used to be such a bad eater – and misbehave so terribly at the table, that we sometimes resorted to having him eat separately in the dining room.  “But then I just dropped it all on the floor for the dogs!” he laughed.  “There was really nothing you could do.”  His grammar, word choice, and articulation are still works in progress, but this is essentially what transpired.  And then a few days ago, along the same line, he comments, “Can you believe I used to stuff the toilets till they spilled everywhere?  And then make my nose bleed all over me?”  Yes, I can believe it.  I survived those phases and to date, all the others.  The part I can’t believe is that he remembers these destructive patterns and now can laugh about them.  I had no idea he possessed that kind of self-awareness, either then or now.  On days like this I can imagine our son when he’s 22 or maybe 25, a young man with a strong, chiseled body, darkly tanned in the summer, and a mischievous smile that draws women like flies to sugar.  He is handsome, yes, but he is also kind.  He’ll struggle with memory, processing, money management, and, perhaps most worrisome, the ability to distinguish between those who wish him well and those with more predatory intentions.  But I imagine him standing on his own.  He’ll have a job – hopefully in an area that interests him, like video games or landscaping, and with any luck, he’ll be proud of his accomplishments.  I hope he’ll continue to look back on his journey with the same brand of humor he’s demonstrating now, the good-natured ability to acknowledge his past in order to help propel him toward his future.   Miraculously, he regularly proclaims that he intends always to live with his mom, or at least next door, a fact that both astonishes and comforts.  Opening my heart to this child was an intense struggle, the boy who hurt himself as much as – or even more, than he hurt me, but now the door to my affections is swung wide open, and the view grows more spectacular.  As long as I have a home, so do both our children.  The four of us spend the day together lazily, with me doing my best to pry Peter and Sophie away from their cavernous playroom toward the beautiful day outside.  When I finally succeed, I wonder whether my prediction that Peter might like landscaping is too ambitious.  He loves to help outside in the fall and early spring, but I realize now that summer is a different matter.  The insects make him swat and spin and growl with consternation.  He jumps on the trampoline and squeals, his body suddenly arched and rigid, whenever a gnat or fly swirls past.  “I want to go inside!” he howls.  And so I concede.  The presence of insects remains a major sensory problem and creates in him marked over-reactions.  Maybe the bugs – or more like the absence of bugs, are the reason I spend so much effort getting myself and the children to water during the summer, either the town pool, our favorite lake, Mudge Pond, or the ocean. Water is a weapon against the creepy crawlies, at least the kind that dominate the skies.  Plus, the kids and I are as drawn to water as beetles are to my rosebushes.  Pat would rather spend the summer hiking in the mountains, but he’s forever the good sport.  Between Peter’s bug issues, my mangled ankle, and Sophie’s inevitable cries of boredom and exhaustion (that ensue after 10 minutes on the trail), the opportunities are few and far between.  Like all parents, the two of us occasionally wonder when we’ll get to resume, on our own or as a couple, some of the activities we enjoyed pre- children.  Given the dynamics of our family, and our alarmingly increasing ages, it seems possible that “our” time might never come, but that’s okay.  We’re growing, we’re stronger, and we’re seeing progress where before we saw only disaster and hopelessness.  The kind of mountain climbing we do these days is virtual, but there’s no doubt we’ve scaled countless peaks to reach and help Peter, and there’s bound to be more ahead.  We try and will continue to do the same for Sophie, though her needs are subtler and in many ways more tricky to traverse.  But for now, with the bugs filling the airways and the sunny day to lure us along, I think I’ll pack the beach bag, load up the kids, and head to the lake.

June 4, 2012

Assateague Island, MD (May 24, 2012)

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

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

November 2011 (Red Hook High football field)

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

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

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

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

Thanks – Mary

November 11, 2011

 

The Rail Trail, Millbrook, NY (Nov. 13, 2011)

November 11, 2011.  Peter comes home for the weekend this afternoon and I can’t wait to see him.  When he was with us for Halloween, he admitted that Green Chimneys was helping his brain.  “I know its good for me, Mom,” he smiled shyly.  When he’s with us he doesn’t want to do much.  I watch as he drinks in the familiar surroundings, the scents and sights of home that he surely loves but can’t always handle.  He’s content to play with his toys or snuggle with me in front of the television with a blazing fire to keep us company.  Sophie senses that Peter and I are very close and at peace in these moments and it unsettles her.  She’s not used to Peter and I sharing that kind of intimacy and she feels threatened.  I understand, of course.  Our youngest has been terrified that Pat and I are going to send her away, too.  I try reassuring her by explaining that Peter has a problem in his brain that requires 24/7 attention, and that Green Chimneys can help him in a way that we just can’t.  It’s a hard pill to swallow.  Parents are supposed to be able to fix all their children’s problems.  Sophie deserves to be able to believe this, especially given her own traumatic past, but I’ve been put in the unenvious position of dissuading her of such notions, at least of late.  The child who constantly stated she hated her brother now waits impatiently by the window for his arrival on an every other weekend basis.  At least Green Chimneys has taught Sophie that she does indeed love Peter, an unintended consequence for which I’m grateful.  Sophie knows we’ll have a quiet weekend because we’re beginning to understand that Peter just can’t handle the noisily thronged outside world, preferring instead the newfound quiet of home.  Everybody, including educators, therapists, counselors, and us, has finally stopped trying to force, coax and cajole Peter into living a neuro-typical life despite his very obvious neuro-differences.  At night, after the children are asleep, the phone rings.  It’s Peter’s psychiatrist from Green Chimneys.  She wants to discuss Peter’s hallucinations, specifically the Grinch that he sees, hears and feels on an eerily regular basis.   I’m a little annoyed at first, it’s Friday night after all, and I was just settling into the luxurious feel of knowing that everyone I love is safe and sound and under one roof.  But she’s a busy woman, I realize that, and so I shake off the intrusive vibe and listen closely to what she says.  She’s been talking with Peter lately, as well as his teachers, aide, and dorm staff, and she’s come to the conclusion that our son is suffering from separation anxiety.  She thinks the Grinch materializes when he’s away from me.  Yes, me!  I can hardly believe my ears.  The psychiatrist explains, “He says ‘Mommy makes him go away.’” Dumbfounded, I make her repeat her theory, as well as any supportive evidence.  Could it possibly be that the boy who spit and hissed at me for our first years together is now counting on me to keep his demons away?  Could it be that I have actually become the person in the world he most trusts to keep him safe?  My heart beats so loudly I can barely hear her speaking.  I do my best to convey maternal concern but I can’t shake free of the sensation that I’ve just won the lottery.  I’m sorry that Peter struggles with these experiences, I know they scare him witless, but this worrisome news cloaks a brilliant nugget of gold.  After we hang up, my mind reaches back to that late summer day, many years past, when Peter first confided in me, telling me in a near whisper as we trudged across a puddled parking lot that the rain hurt him.  Though I knew it was a breakthrough – to our knowledge Peter had never shared even a snippet of his interior life with another human soul, I couldn’t imagine that such a tiny crack in his armor would lead to this nearly perfect moment.  After we hang up, the salty taste of my own tears takes me by surprise and I swipe at my face as I pad down the hall to kiss Sophie and then Peter one more time.  I realize with bittersweet surrender that we have reached the end of our journey to create a mother-son bond.  My quest to make Peter understand that he is loved, unconditionally and forever, has been a success.  I hate that he’s feeling, hearing, and seeing things but my heart nearly cartwheels knowing that he believes I can  stop these scary episodes.  The rub, of course, and the reason for the tears, comes in appreciating that this epiphany might never have occurred had Peter not gone into a residential school.  The dogged diligence required to keep him and the rest of us safe and at least somewhat functional was clouding the path.  It seems in our case distance between mother and child has actually bridged, rather than widened, the gap between us and perhaps I shouldn’t be surprised.  FAS is a cunning disability, and early neglect, abuse, and deprivation only serve to exasperate an already faulty mindset.  But despite the irony, the sense of loss that envelopes even the most prized epiphanies, I’m more optimistic than ever about my son’s heart, and our futures together.  Whether rain or Grinch, Peter has empowered me to shield him from the ravages of his past as well as the obstacles in his future.  There’s so much ahead, challenges I don’t even want to fathom, but for now I’m content.  I’ve given him my love, and in return, he’s shown me his trust.  I fall asleep feeling luminous and light.  Having reached for the unreachable, I now know that some dreams really do come true.

August 29, 2011

Dutchess County Fair, Aug. 26, 2011

August 29, 2011.  I’ve been a half-hearted insomniac most of my life, teetering on the edge of clinical significance, as seems the case with so many other challenges in my life!  As I lay awake at 2 a.m. watching Mystery Diagnosis in the bonus room – a show Pat claims is at least partially responsible for my insomnolence, I can’t help but giggle to myself.  Our dog Pippin, loyally snug in the crook of my arm, looks up at me, sleepy but enthused.  It seems we share synchronicity of mood, a divine pleasure I think any dog lover understands and cherishes.  I was joking with Pat the other day in the car, accusing him, at age 63, of vacillating between adolescent rage and geriatric forgetfulness.  A little erratic behind the wheel, I honestly couldn’t tell whether he was experiencing road rage, absentmindedness or some combination thereof.  He thought my description funny and the memory of that drive had me laughing in the middle of the night despite the weight of the worries keeping me awake.  But all kidding aside, I think he and I are suffering from the same symptoms, they’re just manifesting differently.  It’s been nearly ten weeks since Peter entered Green Chimneys as a residential student, but we’ve yet to reach a new equilibrium.  I’ve read the Out of Sync Child cover to cover, maybe more than once.  If only it provided guidance for the out of sync parent, which is surely what Pat and I have become.  Before Green Chimneys, we were on a tumultuous ride with our now 10-year-old son, and one that didn’t always produce desired results.  But it was a ride we nonetheless came to understand.  It was familiar.  Now things have changed for Sophie, Peter, Pat, and I.  It’s like we’ve been flung into the realm of some metamorphic process and we’re waiting with bated breath to see how we’ll emerge.  Will we all become butterflies or will some combination of us turn out less desirably, like say, a newt?  Peter came home for his first lengthy break on Friday afternoon.  He doesn’t have to go back until Labor Day.  He’s lost a little weight, seems more wistful than I remember, and is acting more than a little shy.  Despite the awkward melancholy, we picked up his meds at the Health Center, said our goodbyes to staff, and headed straight to the county fair, which was a good thing because we later learned it was closing at midnight due to the anticipation of Hurricane Irene.  Our kids look forward to the fair almost as much as Christmas or Halloween and I would have hated them to miss it.  When we finally got home, exhausted, grimy, and smelling of corndogs and fried dough, I watched as Peter brushed his fingers lightly along the kitchen island and then the kitchen table.  The excitement of the fair had pushed the melancholy aside but now it was back.  When I asked what he was doing, he responded, “It feels like a new home, Mom.”  I couldn’t believe what I’d just heard, and yet I knew exactly what he meant.  Despite the fuzziness that coats so many of his thoughts, in that moment he experienced complete clarity of mind.  I almost broke down in front of him but I fought back my emotions, bit my quivering lip, and gave him the biggest hug he could handle.  “Your home will always be where I am,” I whispered.  I’m not sure he bought the half-truth but he was gracious and stoic enough to leave it alone.  We have changed, our little family of four.  But instead of slumbering peacefully until the final transformation is complete, I remain alert and restless, pensive but also steadfast in my conviction to stay the course.  I must have faith in myself, my husband, of our decision to place Peter in a residential school, and in the strength and resilience of our two remarkable though disproportionately wounded children.  Our metamorphosis, it seems, has only just begun.  I’m hoping all four of us have the stuff from which butterflies are made.

April 11, 2011

Aunt Pattys Birthday Visit (March 2011)

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

February 24, 2011

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

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

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

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

January 23, 2011

Poet's Walk (January 22, 2011)

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

January 13, 2011

Lulu LoBrutto, 5 months (January 2011)

January 13, 2011.  Next week I go for a second interview regarding a position I nearly covet with an environmental advocacy group.  It’s a chance of a lifetime, a chance to jump back into a meaningful career, to contribute, and to turn some much needed attention to myself, to my own goals and aspirations, my own sense of accomplishment and purpose.  When I look back over our time as a family, I realize I’ve been happiest, and most sane, when I was immersed in work, teaching at Bard.  My life is still incredibly busy, but my days are filled disproportionately with managing my son’s physical and mental health, his education, and working, always working, to help him integrate more successfully into daily family life.  And it’s wearing me down.  I know I’m giving him my best, at least on most days, but I’m also getting to the point where I’m not sure sacrificing every ounce of every fiber of my being for miniscule progress is prudent, or even very beneficial.  I may have already brought him as far as he can go in terms of attachment and orientation to his world.  It’s very possible that he’s the best that he can be and the time has come to loosen the reigns and somehow expand his circle of caregivers.  When he became our son, Peter trusted no one, he was lost inside his own disordered mind, and was more alone in the world, literally and figuratively, than any child on the planet deserves to be.  Pat and I have changed those facts, substantially, and I’m proud to acknowledge that our son is now a child who knows how to give and receive love, who knows what it feels like to trust and who shows compassion toward others on a daily basis.  There are times he looks at me, shy at first, and then his eyes light up, all at once, as they meet mine.  My heart soars in these moments to heights I never dreamed possible.  They are transcendent in their beauty, and in many ways, nothing short of miraculous.  I realize that.  But I also realize that despite these achievements, Peter forever will require 24/7 care, there’s no doubt about it.  He can’t regulate his own behavior for even a nanosecond and will always need someone to model and talk him through appropriate choices and more generally, help him navigate the everyday terrain of his life.  The professionals in our lives are telling us that Peter needs an entire system of care beyond what we can provide as parents and that its time to start turning over the reigns, at least in some respects.  But even though I accept the truth in these words, I realize that I’m still thinking and behaving as though his condition can be substantially rehabilitated, that I can will our son toward a more meaningful, more complete future.  Maybe I’m not ready to let go of that dream, maybe certain dreams do help us sustain rather than delude.  Or maybe holding onto the hope that Peter will emerge higher functioning than seems practicable is the only rational course of action – after all, to admit otherwise is to give up, and I can’t and won’t do that.  So where does that leave me?  If I’m fortunate enough to be offered this position, can I in good conscience take this full-time job or will I be turning my back on our needy children, on the 24/7 demands of raising Peter, not to mention the less urgent but just as important responsibility of helping Sophie blossom and overcome her challenges?  I think the answer lies in believing in myself, and in realizing that its okay to have my own life, my own aspirations, and that career, family, children (even special needs children) don’t necessarily have to be either/or propositions.  So many women grapple with this balance, there’s nothing new here, but somehow the stakes seem higher because our children are former Russian orphans, and because Peter has overwhelming needs.  Egocentrism at it’s best perhaps.  But one thing I do know: I’m hopeful about this opportunity.  If I’m able to persuade the folks that need persuading that I can contribute substantially to their cause, then I want to find a way to make this work.  I want a chance to rediscover myself in a manner that expands my identity as Peter and Sophie’s mother to include career and colleagues.  I want to think that diving back into my professional field, coupled with my new teaching responsibilities at Marist College, may even make me a better parent.  I’m too consumed right now with the problems, the heartache, and the never-ending, drive-you-nuts redundancy of life with a brain-injured child to have any sense of perspective, or balance.  Plus, the issue of income and benefits can’t be ignored.  Peter’s problems have caused an enormous financial strain, one that Pat bears 100% right now.  The fact that he’s significantly older than I and under tremendous pressure doesn’t escape me, ever.  Our financial safety net has been chewed clear through by private therapists, evaluations, specialists, equipment, medication, relocation, and countless – sometimes foolishly desperate, interventions.  If Pat were to get sick or injured or worse, well, I’m not quite sure what I’d do to keep our family afloat.  Our lives are insecure in so many regards, a hard pill to swallow for a person who craves security and stability.  The bottom line is that I’m very excited about this opportunity and look forward to learning more about the organization and the people who work there.  At my initial interview, I noticed a dog bowl and a large bone in the building.  I wonder – if I’m fortunate enough to be offered the position, whether I’ll be able to bring our dogs (okay, maybe just one) to work!

 

January 7, 2011

An artist's eye (Dec. 2010)

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

December 22, 2010

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

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

December 12, 2010

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

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

November 10, 2010

Hayride at Hahn's Farm (Oct. 31, 2010, Salt Point, NY)

November 10, 2010.  Pat and I are at as a loss again.  Peter’s behavior for the last few days has been the worst its been in a year, at least.  From hurling things at us in the middle of a Parcheesi game, to calling me a pig, to throwing his Halloween candy in the garbage during a rage, our son is slipping again.  After soccer Saturday, where Peter played better than he has all season, we embarked on a family project, which was to plant a Weeping Cherry tree and create a little memorial around it for our dog Scout, who died last Friday.  We were going to wait until spring, but one of Pat’s clients surprised us – and in doing so lifted our spirits immensely, by sending a tree in the mail!   I wasn’t even aware that such a thing was possible.  She’s a dog lover too, and was particularly touched when she learned that I had gotten Scout right after my father died, as she apparently did the same.  Her thoughtfulness and generosity is allowing us properly to say goodbye to Scout now, instead of next spring, while her spirit is still strong and our grief great.  The project was going well except that Peter wouldn’t, or couldn’t, help.  He’s drifted back into himself of late, relying on old, ingrained habits to occupy his mind and push those close to him away.  Constant nonsense talk, noncompliance, body flailing, behavior generally more fitting of a grumpy baby than a 9-year old boy.  While Sophie, Pat and I were working on the tree, Peter was supposed to be sweeping the garage.  But he wouldn’t do it.  He was making a bigger mess, on purpose.  So we sent him to his room to regroup.  Guess what he did?  He took his diaper off and urinated directly onto his bed.  We discovered the damp, musky presentation several hours later.  He hasn’t done that in over a year.  And I can’t figure out what’s causing him to revert to these maladaptive behaviors.  He loves his new school, and we thought he was finally settling into the new routine.  His state of continence is improving, his work is better, and he’s made a new friend.  I don’t get it.  Maybe it has something to do with Scout’s death, but Pat and I don’t think so, and neither does Lindy.  He didn’t like Scout, shows no interest in dogs, in fact, and really doesn’t grasp the concept or the implications of death.  I guess its possible this is what’s causing his angst – his lack of understanding and ability to get his mind around what happened.  I think I’ll have a talk with him today, if I can steal a quiet moment, and see if it helps.  I have to do something.  Yesterday he spit on me again for the second time in five days and when I asked him to use the bathroom, he grabbed his crotch with both hands and thrust his pelvis toward me, screaming “no!”.  The ghetto display surprised even Lindy, who watched stoically as I did my best to corral the escalating situation.  Where he learned that delightful little trick I have no idea.  Sophie had her first swim meet of the season on Sunday, and though Peter is also on the team, he sat this one out.  He’s not ready for a meet yet, but that’s okay.  We had Sophie sit out her first meet, too.  He’s trying hard and doing a great job of staying on task, at least in the pool, and we don’t want unnecessarily to discourage his efforts or embarrass him.  Sophie also continues to improve, and at times really excel, in the water.  I wish she could handle the ever-increasing demands of school as well as she handles herself in the pool.   If only school could take place in a semi-submerged setting, she’d cope with her academic responsibilities, no doubt, with grace and confidence.   Thank goodness she has a top-notch teacher who’s blessed with an even temperament, a good heart, and an “I don’t let anything faze me” approach to third grade.   She really is the perfect match for our “I’ll give you a run for your money” dynamo of daughter.  Funny how our one positive experience during Peter’s stint with Mill Road Elementary School was the semester he spent in the first grade inclusion classroom.  At the time, Sophie’s current teacher was the regular education 1^st grade inclusion teacher and another capable educator, a woman who had previous experience teaching FAS kids in a residential school, taught the special education kids.  Unfortunately, the folks who make the decision weren’t keen on listening to the thoughts or advice of the only person in the school who had real experience working with our son’s constellation of disabilities.  But no matter, I’m working hard, and so is Pat, at putting those three and a half years behind us.  We still don’t know whether the district is going to appeal the Due Process Hearing decision, but I hope and pray they will decide to leave us alone.  The experience has left me feeling somewhat like a Soviet dissident, as other parents now covertly approach me with their own dismaying, hurriedly whispered, special education stories, some of which sprung to life after our hearing decision.  I had hoped the ruling might stir something within the district’s collective conscience and move them to reexamine their mindsets and practices, but that may have been wishful thinking on my part.  If what I’m hearing from other parents is true, nothing has changed, at least not yet.  But what has changed is our bargaining position and our place at the table, meaning we now have a bona fide say in what happens to our son and his future.  I am so grateful for that.  Despite our recent setbacks, it’s nothing short of hope restored.

October 15, 2010

Pat (Fall 2009)

October 15, 2010.   It’s only mid-October but we’ve already experienced two Nor’easters.  The torrential, prolonged downpours are terrific for the water table but toxic to the autumnal leaves for which our Hudson Valley is so famous.  Still, the scenery is beautiful, the temperature drops further each night, and pumpkins dot the lawns and doorsteps of Red Hook in exponentially increasing numbers.  My husband wishes fall would last as long as summer or winter, but not me.  In my view, the hues of autumn, the reds, oranges, and burnt yellows, are treasured exactly because of their brevity on the palate of our landscape.  Peter’s school driver drops him off this afternoon and though elderly, asks with an almost boyish quality whether we plan to enjoy the outdoors and spectacular views this weekend.  Indeed we do.  This week has been tough for Peter, he likes his new school, I think, but everything has changed, and he’s had to say goodbye to old friends and familiar faces.  After swim practice tonight, we’re picking up his best buddy and taking the kids to their favorite restaurant for dinner.  As much as I want to keep this friendship going, I worry whether Peter can handle the excitement right now.  The idea of taking a friend to dinner wouldn’t overwhelm most 9-year-olds, but to Peter, its like winning a trip to the moon.  The instant I told him, his adrenalin shot up, his body began gyrating, and all kinds of nonsense spewed from his mouth as though a wire had been tripped inside his tangled brain.  Lindy is doing her best to organize his body and mind so that he can attend to the rest of his day, but we’re well aware that he’s experiencing a significant transition, and that to a large extent, its an adjustment we may just have to ride out.  The good news, at least for Pat, is that he won’t be present for tonight’s adventures.  He’s in New Jersey visiting his daughter and granddaughter, a beautiful duo the children and I rarely get a chance to see.  Pat’s daughter struggles with this chapter of her father’s life, which means she struggles with Sophie and Peter and me and all that goes with us.  I do understand, I can only imagine the complex set of emotions I’d feel if my father had embarked on another try at parenthood, but still, I wish things were different.  I wish compartmentalization were not necessary for such a kind, generous, and loving man as Pat.  I wish his daughter could understand that Pat has love enough for all of us, and appreciate, just a little, how difficult, and tragic, his primary shot at fatherhood became.  Our life is so much more complicated because of where we live – financially, educationally, in terms of career, and support, and the sole reason we live here is because of Pat’s unwillingness to be too far from his adult daughter.  He’s already said goodbye to his two sons from his first marriage and he can’t bear even the thought of serious geographical separation from his last surviving biological child.  What I don’t get is why she doesn’t see it, why she doesn’t feel, sense, and breath the unassailable love and affection Pat has for her, and now for his toddling granddaughter.  It’s beautiful really, and something that should give rise to joy and celebration rather than constant work and struggle.  But he’s doing it, he’s putting forth the effort with patience and kindness, and I’m proud of him.  Truly, he’s a beautiful man and one that deserves at least some modicum of peace in his life.  By the time he gets home tonight, I hope to have the kids tuckered out and in bed and little Lulu, our newest addition, installed in her cozy box that fits under my bedside table.  No rest for the weary on our home front either, I’m afraid, but I do look forward to Pat’s return.  Family is a more complicated word today than when I was young and undoubtedly requires significantly more creativity, purpose, and determination than perhaps it once required.  I am 45 years old, my husband is 62, we have two adopted children who were born in Russia and he has two long deceased sons, a married daughter, and an almost 2-year-old granddaughter.  How’s that for complicated?  A born and bred New Yorker, he loves opera, books, theater and museums, and though I share all those passions except opera, I’m a southern girl who loves my Gator football games and the kind of barbeque you simply can’t get your hands on anywhere north of southern Virginia.  We work, Pat and I, because of and despite our differences and similarities, and for that I pledge always to be grateful.  This weekend we’ll lug our two rambunctious, hyper children to various venues designed to enjoy the great outdoors, taking photos of the leaves, and occasionally each other, as we scatter among them.  If fall is a brilliant snapshot, then life is a flowing river of endless rolling film.  I hope and pray the documentary of our lives is happy, or at least filled with happy moments, and that when the time comes, and I look back at the thousands of snapshots I’ve taken, the various shades of progress, compromise, resolve, love, and determination, for each other and our children, will shine as brilliantly as tomorrow’s glittering leaves, when the rain clears and the sun rises high above the trees.

 

October 14, 2010

Lulu's 1st Apple Picking Excursion (October 10, 2010)

October 14, 2010.  Pat’s 85-year-old mother watched the kids last night so we could go to dinner, solo, for our anniversary.  How divine!  Never mind we had to eat at 5:30 in an empty French bistro (though it was bustling by the time we left) in order to ensure the kids were in bed by the appointed hour.  For our anniversary, Pat gave me a pendant of the scales of justice.  The perfect gift, he suggested I wear it any time I enter the school – after all, Sophie still attends, or have to meet with any of our former accusers.  We laughed and talked, shared our meals, drank a little red wine, something we rarely do, and enjoyed delicious, seasonal tarts.  When we picked the kids up from his mother’s house a few hours later, she showed us a letter she received from AIG, the insurance company from whom she purchased an annuity.  Basically, the letter was written to ascertain whether she was still alive – no kidding.  It stated that if she didn’t provide proof of her “still living” status within 20 days – and such proof necessitates procuring notarized documents, AIG had the right to terminate her annuity.  My mother-in-law being the sport she is, the three of us laughed so hard I swear I spritzed a little in my panties.  But really, the entire concept is about the most preposterous thing I’ve ever encountered.  And that’s saying something, given the fact that I’m still reeling from the recent school battle.  Death certificates are public records and a company like AIG would have little difficulty obtaining them to weed out the occasional surviving relative fraud.  This letter was nothing more than an ill–conceived attempt to steal from the infirm and aged who are no longer capable of handling their own affairs.  Having become adept at the art of nasti-gram, I offered to draw up a written response.  With chin held high and eyes gleaming like a hawk’s, she replied in a soft, ominous tone, “I’ll be writing that letter myself, thank you.”  There’s little doubt she’ll get the job done, and then some.  On the drive home, I ask Peter again about his second day in his new TEACCH class (dubbed PEACCE in New York), which has 1 teacher, 2 teacher assistants and 6 kids, including Peter.  “It’s stupid,” he says.  “I have homework and not too much recess and my teachers, all they does is make me do work.”  It’s music to my ears.  Peter will grow and learn in this program, even if he’s not yet feeling the joy.  He’s had an extended summer vacation of sorts and it would be tough for anyone to be thrown back into the fray, especially a highly structured one with new faces, new routines, and new expectations.  Hopefully his grumpiness, and the backsliding of behavior, will be short-lived.  Pat and I are praying the school has decided to loosen its grip on our family, allowing Peter, several years late, to begin learning in a way that will build his potential by addressing his deficits, the legacies he inherited and forever will carry as a result of his Russian birthmother’s drinking habits.  Honestly, I don’t understand what’s happened to us as a society, as communities and neighbors, when little old ladies get letters saying they have to prove they’re alive in order to keep receiving their monthly incomes or where little boys with brain damage can’t get the interventions they need because the systems in place protect the process, and sometimes the careers, the pensions and the stock options, but not the individuals whom they’re entrusted to serve.  Luckily, my mood was high yesterday and I smiled broadly as I watched Sophie race from the car into the house to greet our newest family member, Lulu.  Even when bureaucrats and corporations corrupt, cajole, and exploit, there are individuals – friends, relatives, some times even strangers – who buoy our spirits and brighten our souls.  Pat and I need a new puppy in the house about as much as we need bats in the attic, but the offer was so generous, and came at such a precipitous moment, that we felt fate actually may have been nudging.  I really can’t say, but I do know the puppy is gorgeous, sweet as a peach, and full of mischief and demand.  We haven’t slept since Thursday night, when the kids and I picked her up, and I don’t envision sleeping again any time soon.  But that’s okay.  It’s all part of the journey.  I thought our old Jack Russell would have been gone by now, our plan was to say goodbye to her last weekend, but bringing the puppy home has caused her to rally.  Like all things in this world, she’ll let us know when the time is right.

 

October 6, 2010

Scout Swimming Next to our Canoe (Summer 2003)

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

 

September 13, 2010

Poet's Walk (September 2010)

September 13, 2010.  These last few nights have been wide-open window nights, a sure sign that autumn lurks around the corner.  I lay awake, unable to sleep, my thoughts racing in seeming synchronicity to the breeze that tickles my hair as it gently spirals through the room from the window over our bed, an uninvited but welcome companion.  Rest eludes me, this time, because the head of special education is saber rattling, and in a not so subtle way.  Because we don’t expect a ruling on our due process hearing before September 30, our son’s psychiatrist, who is well known and respected in the community, wrote a letter to the district requesting homebound services until the hearing process was resolved.  She agreed to this course of action, in part, based upon Dr. Federici’s recommendation.  Under New York education law, the district is required to provide such services upon written request of a child’s physician.  But the head of special education is balking, trying to scare us with poorly disguised threats and vague, sinister language that conjures up images of truant officers and Child Protection Services.  He’s gone so far as to say that the fact that we are in the D.C. area today and tomorrow does not constitute “legal excuse for [our] children’s absence”.  The fact that he’s targeted both kids with this pronouncement, and not just Peter, isn’t lost upon us.  Even our son’s hospital stay, scheduled for next week, remains legally unexcused, whatever that means, in the official eyes of the school district.  Peter’s recovered substantially from the disaster of last year, physically, emotionally and psychologically, and we have no intention of compromising his health and welfare by putting him in harm’s way again.   The double whammy of psychological abuse delivered at the hands of “educators” intent on turning him against us, coupled with the emotional damage and physical stress of having to sit through day after day of a curriculum that for Peter might as well have been delivered in Swahili, caused his brain literally to deteriorate.  Now that we know what really occurred last year, its no wonder he came home raging every day and began suffering from visual and auditory hallucination.  Peter’s mind is fragile yet as these past few months have proven, its also incredibly resilient.  Our son is healing, he’s coming back to us, and until this sordid affair is settled, home is not only where the heart is, its where safety resides as well.  So if the school thinks a nasty-gram or two can scare us into submission, they’re sorely mistaken.  Our child’s life is at stake.  Safeguarding who Peter’s able to become – his soul, his happiness, his very potential, is our sacred obligation.  It’s an obligation from which we’ll not run and for which intimidation tactics are destined to fail.  I take a phone call during a break today from a new friend who lives in Minnesota.  She too is an adoptive mother of Russian born children and knows a thing or two about loss, love and primal struggle.  We have so much in common, it seems, but mostly we share an eerily similar tale of family dynamics.  We’re able to speak for 20 minutes about a number of issues and the very sound of her voice releases some of the festering tension within me.  We talk about how the Peter’s of the world, and their parents, have no organized voice, certainly no lobby power, and therefore little means to convince the decision-makers in their children’s lives – be they social workers, educators, physicians, mental health providers or clergy, of the extent of impairment.  Because there are no established or widely accepted treatment protocols for post-institutionalized, alcohol-exposed children, those in a position to render decisions affecting our children’s future tend to take one of three courses.  They treat our kids like throwaways, the most catastrophic approach, they apply a one-size-fits-all mentality, which is dangerously simplistic, or they borrow from other models like those developed for autism.  Using autism protocols to treat our kids, however, especially those with normal or above-average IQs, makes about as much sense as forcing a husky-sized child into slim-fitting jeans.  Such a decision only makes sense in the absence of other options.  As my friend and I hastily say our goodbyes, I hang the phone up thinking about this predicament, how our lack of voice as a community, and our society’s lukewarm interest in our children’s welfare, is largely responsible for the grief and trouble our families have endured.  I want to break this cycle of tragedy, suspicion and misunderstanding, both in ways large and small.  I want to help find a way to form a voice, a united voice, that advocates not only for our children but for parents scattered across the country, well-meaning people who either suffer in silence or bear the unmistakable brand of righteous battles fought and lost.  There’s something terribly wrong when its not safe for a 9 year old boy to attend school, when lines in the sand are drawn not only from ignorance and indifference but because there’s no clear solution – no path toward recovery, that ordinary, every day people can follow.   I know a little about how those “refrigerator mothers” of the 50s and 60s must have felt as they tried to raise their autistic children in the midst of constant misunderstanding, accusation and lack of science.  Fifty years later I’m still outraged on their behalf.  They were unwilling pioneers (and victims) in a field not yet born.  I wonder if 50 years from now the plight of mothers raising post-institutionalized, alcohol-exposed children will have gone through a similar renaissance.  Better yet, maybe us modern “refrigerator parents” can band together with courage and unity of purpose to eradicate the problem, along with the accompanying stigma, once and for all in our lifetimes.  Now wouldn’t that be something?

September 6, 2010

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

September 6, 2010.  I haven’t been completely honest with myself, writing recently about all the beautiful moments with Peter.  The truth, the whole truth, is that there have been a number of alarming incidents sprinkled among our more encouraging moments, moments I cling to as evidence that there’s real hope for Peter’s future.  I suppose I’m both reluctant and afraid to consider how these disturbances lessen the benefit of the positive experiences to which I so greedily cling.  Peter is complicated, his moods and reactions sometimes vacillating on the turn of a dime.   On the way to the Jersey Shore, for instance, he lay down on the seat and began kicking the rear window with all his considerable, adrenalin-laced might.  The reason?  Sophie wouldn’t share one of her DS games.  I had to pull the car over on the middle of the interstate to wrestle him back to stability.  We all could have been killed.  With little room and a steep drop on the shoulder, even a slight sideswipe would have sent us tumbling down the ravine.  But I had no choice.  Peter had turned violent and could have punched out the window, opened the car door, or even worse, turned his temporary but psychotic attention to Sophie.  There have been at least three other incidents more or less like this in the last few weeks.  They are part and parcel of what living with and loving Peter entails on a daily basis.  There are times when our son is his own worst enemy and requires someone else, usually me, to pull him from his dangerously disorganized cogitations.  What this holds for his future, I don’t know.  His tendency to disassociate, to so easily break with reality and escape into what can only be described as psychotic thought, scares the hell out of me.  When these episodes are through, and thanks to lithium they’re much shorter in duration than they used to be, he’s always remorseful, sometimes even reflective.  But the remorse doesn’t translate, at least not yet, into ability to prevent or abort the next episode, and that’s the real tragedy.  Peter doesn’t, and possibly may never, learn from his mistakes, a crucial, fundamental ability the rest of us take for granted but one that is always, it seems, just beyond his reach.  Saturday we went to Mudge Pond, one of our favorite watering holes, to fish, picnic, swim and enjoy the day.  Autumn arrives early in this part of the country, often in spits and spurts, and so even though the temperature was in the 90s most of last week, yesterday the high struggled to reach 70.  Considerable wind and low clouds rolling across the horizon further conspired to strip us of one of our official last days of summer, but we didn’t mind.  With fresh prosciutto and rolls packed for picnicking, and the kids busy with catching minnows and frogs, we had the park mostly to ourselves, relishing the brief snatches of sunshine as they appeared.  Two parallel floating docks jut into the lake and form the sides of the designated swimming area.  For a while, I teetered on one of them, intent on catching a fish for the kids despite not knowing what I was doing and feeling like the wind was about to launch me into the choppy water.  At one point, a youngish man in khakis and a blue shirt walked out on the dock directly across from me and made a call from his cell phone.  I didn’t think much of it but as we packed up to leave, Pat’s mother pointed to a pile of clothes on a bench.  Earlier, she had watched the man in khakis strip to his bathing suit and dive into the lake.  Apparently, he hadn’t come back, and by then we were the only people foolhardy enough not to leave because of what had become questionable weather.  His clothes neatly draped across the bench, we puzzled over what to do, searching the expanse of empty lake for signs of human activity.  Pat tromped to the parking lot and reported that one other car besides ours was still there, with a rear-facing car seat in the back.  I checked the clothes at one point for a wallet, I’m not sure why, but there was nothing but a few dollars and his cellphone, which we dared not use.  Eventually another woman in Levi’s appeared next to me as I continued to scan the lake and companionably asked whether there were many swimmers today.  “Not many,” I replied.  “But there’s still one out there.”  After telling what we knew, she explained that she often swims across the lake and back, and that it can take half an hour in good weather and considerably longer under rough conditions.  “I wouldn’t chance it today, though,” she added, concern rising in her voice.  “I’m going to run home and get my kayak and look for him.  Give me 15 minutes.”  Her presence and knowledge both relieved and worried us.  It was possible our mystery man could still be exercising but here was an experienced lake swimmer telling us she wouldn’t risk it in that kind of weather.  Was he merely taking a foolish chance or had he drowned?  We didn’t know.  With Grandma wrapped in a few beach towels for warmth, we huddled near the picnic tables waiting for the woman with the kayak to return.  She was gone longer than 15 minutes, which turned out to be a blessing.  “I see him!” Pat shouted excitedly.  “He’s coming in.”  And sure enough, he was.  I could just make out his bobbing form a hundred yards or so from the shoreline.  I’m not sure why, but I met him on the dock with his towel like a scolding mother, and told him in a cheerful voice that he had given the LoBrutto family and another woman in Levi’s a real scare!  Luckily, he was a jovial guy and we all had a good laugh about the experience, though the woman with the kayak was not pleased when she eventually returned.  “I guess I shouldn’t have done that,” he said, an impish smile crossing his face as he toweled off in the quickly chilling air.  “Well, at least it’ll make a funny story to tell your wife,” I offered.  “I, uhm, think maybe I better keep this one to myself,” he replied.  “She might not think it’s so funny!”  We all said our goodbyes and he volunteered that he would never again take off, alone, across a lake in bad weather.  It was an afternoon destined to become part of our family’s lore, especially because there was such a benign resolution.  Driving home that evening, my thoughts, as usual, drifted back toward Peter.  Our mysteriously missing swimmer, a young father with a cell phone and a few dollars in his pockets, did something a little foolish and caused a few well-meaning strangers, us, a bit of anxiety in the process.  My bet is that he, whom Pat and I have dubbed “the almost dead guy”, won’t do it again.  He’s learned from the experience and will adjust his future decision-making accordingly.  What grips me with sudden, unyielding anxiety, whether in bed, driving the car, or working in the garden, is the realization that the wiring in our brains that allows us to make such adjustments, to learn from our mistakes, is either missing or irreparably damaged in Peter.  Our son’s brain lacks the protective checks and balances so necessary to survival.  He’s destined to live, thanks to his birth mother, in a permanent state of intoxication.  If compelled to do so, by desire, impulse or stubborn drive, he would swim across that lake and back, no matter what the danger, again and again, until one day he finally vanished, for good.

August 31, 2010

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 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

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.  Peter’s difficult week continues.  His entire person begins to undulate, vibrate, and gyrate, sometimes simultaneously, at the slightest correction or request.  When he’s like this, his body language resembles more of a personality-disordered belly dancer high on crack than a 9-year old boy.  Our hearing recessed earlier than expected yesterday, allowing me to pick up the kids from my friend’s house in time for Lindy and Peter to have their regularly scheduled session.  That’s the good part.  Routine is key to keeping our son in his happy zone.  The bad news is that we now have one more day of hearing scheduled for next Thursday.  When Lindy came up from the basement at the end of the day, she was shaking her head and laughing to herself.  “He just can’t keep it together right now, Mar,” she says.  “Whew!  He’s feeling it, let me tell you.”  What she means is he’s feeling the stress.  The stress of the hearing, the unspoken worry that hangs over our summer like an angry storm, his recent birthday and upcoming party, and the transition with which he must cope now that summer school ended yesterday.  A few seconds later he leaps up the stairs and catapults himself onto the couch, nearly knocking over a lamp, a low-pitched moan accompanying his every move.  Lindy had plans to eat out with us – we were supposed to be celebrating the end of the hearing, so she reminds him that the two of them could stay home while Sophie, Pat and I go to the restaurant if he can’t pull himself together.  Luckily, he recovers.  Once he was calm enough, I pull him aside and ask him to think about why he’s had such a difficult week.  This is something on which we’ve been working  – his ability to recognize, at least to some extent, what triggers his behavioral breakdowns.  He’s made incredible progress in this area, which makes me very pleased.  “It’s my birthday coming up and school got over,” he offers meekly.  I watch as his left leg wags to some interior rhythm.  Though I’ve corrected the mistake a thousand times, he keeps calling his birthday party, which is tomorrow, his birthday.  Peter knows he doesn’t enjoy a loud affair with lots of kids, so he decided to invite three friends for cake, a movie and then the local arcade.  A boys afternoon out.  But the anticipation is more than he can manage.  “You’re upset that summer school’s over?” I ask.  His lip trembles as he nods his head.  “I miss Miss Katy forever.”  And then a single tear hurdles down his face.  He made a real connection with one of the teaching assistant’s in his summer TEACCH program (which is called PEACCE where we live).  This is not a minor thing.  Peter struggles with and resists intimate feelings just as vigorously as he avoids touch and noise.  Strong emotions overload the unbalanced and carefully guarded way in which he allows the world to interact with him.  The fact that someone he’s known for 6 short weeks has been able to wiggle her way into his heart is amazing and cause for celebration.  So we talk a few minutes about why its okay to feel sad about leaving someone you care about but that because of their friendship, memories of him will always stay with Miss Katy and he will always have his memories of her.  Maybe a little too conceptual for Peter, but he hangs on every word nonetheless.  I can tell, though, that he’s still gearing up, I’m getting better and better at reading his signs, and so I wait for him to continue. “Okay Mom,” he says.  “But I don’t want four grade!  I want summer school.  I get smart there,” he proclaims as tears begin flowing in earnest.  “And I’m dry,” he whispers.  Only my anger, and my deep commitment to not reveal it, at least openly, to our children, keeps my own eyes dry.  Our son is smart enough to know that he’s found a place where he fits in, where he can learn at his own rate and experience the joy and satisfaction of completing his work himself, but its not within our control to send him there.  “Everything is quiet, Mom, and the teachers don’t let me be wild.  My body feels good.  I’m good here!” he cries.  And then I ask, “which school do you think is better for you to be at all the time, the summer school or your regular school?”  His unequivocal answer is summer school, a program modeled after the TEACCH methodology that’s run by a public corporation formed by New York State to assist local school districts.  Much of our town has puzzled over why the school won’t send Peter there year-round.  I always assumed it was a budgeting issue but after yesterday, after hearing it from the horse’s mouth, I now know otherwise.   Now I know the cost of sending Peter to this program year round is equivalent to the cost of maintaining him in an inclusion classroom.  So what in the begonias is going on here?  Are school districts now allowed to mete out revenge against parents that challenge their collective wisdom by withholding appropriate, cost-effective options to their disabled children?  All I can say at this juncture is that I hope the injustice and heartache we’ve suffered, that the harm our child’s endured, is an aberration and not an epidemic.  I can feel myself revving up.  Although I’ve done a lousy job of protecting my family against this particular cancer, I’m fairly skilled at safeguarding the rights of others.  Bullies should not be tolerated, whether encountered in childhood, family, career, or government.  Peter’s going to a birthday party today for a boy whose looks he can’t recall, though he’s known him since first grade, because they haven’t seen each other since June.  Pat and I use the rare opportunity of Peter’s all-day absence to spend some special one-to-one time with Sophie.  We take her fishing at a nearby lake, where she gets the chance to try out her new pole, a birthday gift from my sister Patty.  Unfortunately, because Pat and I have no idea what we’re doing, the equipment remains unchristened.  We have a great time anyway, watching Sophie wrestle mammoth frogs on the shore as Pat and I continue in vain to snag something, no matter how miniscule, on the line.  Later we stop by a favorite creek and let Sophie catch minnows with her net.  We share little private jokes as Pat skips rocks and I take photos.  Sophie keeps interrupting to ask what we’re laughing about and we playfully shush her away.  The subtlest hints of fall are present, a slightly different quality in the air, a dusty darkness to the leaves, the way the water sits low and lazy, and we’re happy together, in nature and with each other.  Those who wish our family ill, who try to test our commitment to our children, even our marriage, ultimately will fail.  I believe this today.  I’m reading a book right now entitled the Boy from Baby House 10.  It’s about a disabled Russian orphan, Vanya, who now lives with his adoptive mother in Pennsylvania and will soon be heading to college.  The Russian system of government, with their still Soviet-era concept of family and obligation, almost rubbed this boy off the planet by assigning him, at age 6, to permanent bed rest (i.e., cage) at an adult insane asylum.  The orphanage and health authorities did this even though he had a lively mind and a reputation for charming anyone honest enough to notice with his wit, compassion, and intelligence.  Decisions regarding this child’s life, the book reveals, often hinged on personal, even petty, alliances and hostilities.  I can’t help but think of our situation as I finish this book, which is both horrifying and uplifting.  We liberated Peter from Russia, where surely he’d have met a similar fate, only to have the fragile egos and trivial grudges of American public school officials dictate to our family whether and when he will be blessed with an opportunity to thrive.  It took an army of people from diverse backgrounds and nationalities, and who were strangers to each other, to save the life of that disabled but vibrant youngster from Baby House 10.  We thought the saving part of Peter’s odyssey ended on October 25, 2004, the day our children’s adoptions became final.  But apparently, our son’s in need of an encore rescue.  Who, in the end, will serve his cause?  Who will be part of Peter’s army?

August 11, 2010

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

August 11, 2010.  There are only twenty-seven more days to go until the new school year begins and we have no idea where or even if our son will be attending.  I’d like to say I’m the kind of person that can let the suspense fall off my shoulders, but our predicament is wearing me down as surely and inevitably as a rising sea erodes its shore.  And like the sandy dunes, surrendering themselves in miniscule amounts over continuously vast expanses of time, I feel the pressure of our circumstances slowly, even sneakily, gnawing at the contours of my morality, my belief in the fundamental principles of right and wrong.  Our last hearing date is this Friday, August 13.  Peter was scheduled to spend up to five nights in the pediatric video EEG ward, starting yesterday, to reassess the status of his seizure disorder.  Although the school dismisses our neuropsychologist’s latest concerns and report, Peter’s neurologist takes them quite seriously.  To ensure his seizure medication isn’t masking a change in seizure pattern or brain function, his doctor intends to take him off his seizure medication and observe him for several days while he’s hooked up to the video EEG equipment.  I admire Peter’s neurologist tremendously and trust him implicitly.  He’s been with us every step of the way, repeatedly exhibiting an interest in Peter’s entire presentation and well-being, a rare quality, in my experience, among specialists.  If he says Peter needs this again (he endured this process in the summer of 2006), then we’ll do it, despite the discomfort, expense, and inconvenience.  A potential side benefit of the upcoming hospitalization is the possibility that the testing will indicate that Peter has outgrown his seizure disorder, allowing us to discontinue his powerful anti-convulsant drugs.  But whichever turns out to be the case, we need to do this.  Having said that, Pat and I decided to postpone the hospital stay late last week.  The first reason is that I’m so depleted that I literally might have become postal if I had to face being trapped in a hospital room with an uncomfortable, bored child for up to 6 days right on the heels of the horrendous weeks of preparation, testimony, and acrimony that constitutes the LoBrutto family’s Due Process experience.  The second is that none of the other hearing participants were willing to rearrange their schedules to accommodate an alternative date.  Pat’s mother is having an out-patient procedure in Poughkeepsie that day, a procedure she already rescheduled once because of our hearing schedule.  He cannot be in two places at once and there’s no way I’m leaving Peter alone all day in a hospital 45-minutes from home.  It’s impossible to predict whether he’d have been discharged by the 13th.  We just couldn’t take the chance.  It was clear that I was obligated to be present for Friday’s hearing date whether Peter was discharged or not and though we tried, Pat and I could find no one able to spend the day with Peter in the hospital should the need arise.  We’ve already relied on the kindness and compassion of friends one time too many to watch our children throughout the duration of this process.  Once again I struggle to comprehend why the needs of our son always seem to take a back seat to the agendas of the local paid professionals, whether actual or aspirational.  But in this instance, the predicament is my fault.  I should not have agreed to make the date work.  The decision was left up to me and I should have said no, I should have said we needed to find another date.  But here’s the thing: as I try with all my energy to shield our kids from the seriousness of what’s taking place this summer, to hide my anxieties and give them the rich summer experiences they deserve (sans the actual summer vacation), I’m nearly paralyzed with fear over the coming decision.  We have no options left.  Every single private school within an hour’s drive of our home has turned Peter down.  Catholic, Montessori, Christian, Waldorf, and Prep.  No, no, and no.  Private special education schools require our home district’s blessing, in the terms of a referral, before they’re even permitted by charter to contemplate our son’s suitability and acceptance.  I cling to the possibility that justice prevails, for the sake of our son and future of our family, and that it prevails sooner than later.  No decision can occur until the process is completed and the countdown to school, the place that is chipping away at our son’s IQ and functional skills with unforgiving determination, has begun.  Peter’s not yet recovered from the sensory trauma of Sophie’s championship swim meet on Saturday.  His recent behavior has thrown both Pat and I for a loop because he’s been so happy, calm, and connected recently that we’ve let our guard down.  In fact, he’s been so stable all summer, thanks to the palliative effects of the PEACCE program, that I find myself daydreaming over the possibility that we might one day say goodbye, forever, to handling Peter like a crisis management team.  Unrealistic, I know, but the point is that when his sensory and regulatory needs are being properly addressed in school, like they have been this summer, he’s able to manage his time at home much more capably, and amiably.  There will always be swim meets and family parties and other events to throw Peter off-track.  I understand that.  What I desperately long for is a flip-flopping of the ratio, an opportunity to experience more happy days with our son, and as a family, than days spent cleaning up the mess the school generates inside our son’s brain as thoughtlessly as a serial litterbug.  When this process exhausts itself, I hope with all my heart that the experience results in the reaffirmation of my beliefs in both the fundamental goodness of people and the opportunity for logic, reason and fairness to rise above institutional prerogative.  What I guess I really need, to counter all the corrosiveness, is a beach restoration project for the soul.

August 9, 2010

Peter is 9! (Aug. 4, 2010)

August 9, 2010.  Peter’s birthday began as usual, and as predicted, without the difficulties experienced in previous years.  Sophie bounced into our room at 6:15 on the dot, rousing us into instant wakefulness despite having crawled into bed only a few hours earlier.  Pat and I had brought the cake, candles, lighter, hat, glasses and candles upstairs when we dragged ourselves, exhausted, away from the kitchen table where the Due Process Hearing materials were piled in mounds of semi-organized chaos.  For this forethought, I was extremely grateful.  The “shushes” and “you’re being too louds” eventually woke Peter, who tip-toed down the hall to catch a peek.  We immediately shooed him away and back into his bedroom.  At approximately 6:18, the five of us (I’m including our dogs Pippin and Scout) entered Peter’s room to the tune of Happy Birthday to You.  Our son’s new chapter as a 9-year old boy began with him sitting straight up in bed, clapping his hands with excitement, smiling ear to ear, and surrounded by the people (and some of the pets) who love him most.  By 7:06 he was waving goodbye as he marched up the stairs of his school bus, cupcakes in tow and his backpack stuffed with new presents.  We don’t normally allow Peter to bring toys or personal belongings to school because they don’t make it home, but we made a birthday exception for two reasons.  First, he is in a small, highly structured program this summer for autistic children.  Based on the TEACCH methodology, the system allows his brain to work more optimally, which means his thoughts are clearer and he has greater capacity for self-regulation.  Because he’s thinking more clearly, he can handle more responsibility.  Why our school district will send him to this specialized program in the summer and not year round is literally beyond my comprehension.  The second reason we let him bring some presents to school that day had its genesis in guilt.  Peter usually plays hooky on his birthday and we spend the day together as a family.  But that wasn’t possible this year due to three straight days of hearing last week, the first of which commenced on his birthday.  He spent his entire day at school and then afterwards, at my neighbor’s, who I’m sure gave him plenty of love and attention and general birthday cheer.  The boy the school claims is afraid of his family wanted nothing more than to be together that night for dinner.  He didn’t want to go out, not even for ice cream.  All he wanted was a pancake dinner (Pat’s specialty) and time to play with and explore his birthday presents with Mom and Dad.  How far we’ve come, in myriad ways large and small.  Despite the victorious birthday, however, the hearing itself continues along its restive pace, blanketing our summer, our family’s very future, with a sense of foreboding that’s difficult to shake.  Emotions at the hearing are running so high.  It’s honestly hard for me to comprehend because Pat and I, and Peter and Sophie, are the only four people on the planet that have to live, for the rest of our lives, with the benefit or consequences of the outcome.  By late Friday afternoon I was so spent and emotionally drained that I could barely operate the car to drive home.  Though Saturday brought little relief in terms of physical recuperation, the day proved joyous and uplifting, a gift from the god of resilience.  Rising before 6 am, we were on the road within a half hour for a marathon of a swim meet in Rhinebeck.  Eight teams from the surrounding region, consisting of kids ranging in ages from 6 to 18, participated in this annual championship event involving a parade, costumes, body painting, raffles, and of course, lots of swimming.  The day was uncharacteristically pleasant for August and spirits ran high.  The little girls, including Sophie, whittled away the long periods of waiting by drawing on each other from head to toe with washable markers.  At some point I joined in, drawing colorful mosaic designs on their backs as they threw their heads back in laughter whenever I hit a ticklish spot.  Sophie swam her heart out, as did all the other kids, and when the Red Hook Sea Raiders were the declared champions 13 hours later, I cheered wildly alongside the other parents, Pat jabbing me playfully in the side the instant my jubilee turned a little weepy.  As for Peter, he spent most of the day playing with the brother of one of Sophie’s teammates.  These two boys have developed a friendship forged from the common boredom of having nothing to do while their sisters swam and I couldn’t be more delighted.  With frequent checks, Peter made it through the day playing on the adjacent playground and basketball court.  Although he didn’t manage to stay dry, he did manage the day, more or less, and for that I’m grateful and proud.  It was a long, loud and rowdy event, not the usual type of venue to which we’d subject our sensitive son.  However, as is typically the case, the four of us paid the price the next day.  For some reason, Peter more often than not is able to hold himself together during an over-stimulating experience but then falls apart, often miserably, when the fanfare dies down.  Yesterday was no exception.  He tantrumed over using the bathroom, brushing his teeth, the way the couch felt and the sound our injured Jack Russell made as she wobbled pitifully about with her lampshade dragging across the wood floors.  Pat and I tried are best to stay calm, and we did, but we also know from our many years of parenting our son that the behavior cannot be indulged.  For this reason, I’m now trying to cultivate an air of firm compassion.  Yesterday I wanted him to know I understood how difficult the swim meet was for him, just as I want him to learn to make the connection himself, but he also needs to clearly realize that his responses are not acceptable.  When I kissed him goodnight, his demons finally satiated, he handed me a note that read, “Sory Momy.  I love you.”  Just like on Saturday when the championship team was announced, the tears of love, pride, and happiness flowed again, but this time, Pat wasn’t there to jab me.  Though if he had been, I’m pretty sure he would have been crying too.  Happy Birthday, beautiful boy.

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

August 1, 2010

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

August 1, 2010.  Friday began a blizzard of excitement, danger and exhaustion that continues to whirl around our lives for the third straight day.  I testified at our Due Process Hearing from 10 to 4 on Friday, doing my best to convey as honestly but pointedly as possible the school district’s unacceptable conduct over the past 3 years and the ensuing, and tragic, impact its had on our son.  Sophie’s theater debut was also Friday night, the culmination of a month-long camp.  A friend picked her up because our hearing wasn’t over in time to get her to the theater by the appointed hour.  When I called to wish her luck, she informed me that I didn’t need to tell her to “break a leg” because she had been stung in the underarm by a wasp an hour earlier and was therefore already injured.  Poor baby!  Pat and I raced home from the hearing to pick up Grandma, Peter, and Lindy.  We grabbed a quick bite and then drove the 7 miles to Rhinebeck a good 90 minutes before show time because we had to wade our way through the mob of paparazzi and gawkers trying to catch a glimpse of the famous.  Yes, it’s true.  Our little neck of the woods has been taken over by the likes of Oprah, Ted Danson, Madeleine Albright and the former first family.  Chelsea Clinton married yesterday, and many of the guests, including dignataries, are staying in what’s touted as the oldest inn in America, which happens to be directly across the street from the theater where Sophie made her grand debut!  During the lunch break on Friday, our hearing officer drove to Rhinebeck to drink in the scene and returned with a photo of Bill Clinton on his cellphone.  Apparently the former President exited his motorcade directly in front of him.  What a crazy day.  Streets were closed, parking was a challenge, vendors were selling t-shirts that said “The Wedding” (no kidding), and police officers congregated at every possible turn.  Nonetheless, the show managed to open without a hitch, more or less.  I was so nervous for Sophie, who had lots of little parts, ranging from a thief, a dressmaker, a bird, to a sack of straw, that my heart caught in my throat every time she walked onstage.  But the show was wonderful in the way that any production involving 22 kids and a gifted director-teacher is bound to be: colorful, exciting, hilarious, creative, and inspired.  Sophie jumped into my arms with exuberance afterwards and melted all the difficulties of the day away.  Peter behaved beautifully the entire time, which was icing on an already scrumptious cake.  Despite her exhaustion, Sophie insisted on getting up bright and early for her swim meet yesterday morning, which Pat and I had been on the fence about because the second performance was last night and the final matinee is this afternoon.  But the day was one of those gloriously rare mid-summer gifts where the humidity disappears, the temperature drops, and the sky is a brilliant blue, without a hint of the heat-induced haze that so often shrouds the horizon, and so I didn’t protest too much.  Fighting through her fatigue and still-sore underarm, Sophie managed to win two of her four heats, which is always exciting because she gets an on-the-spot ribbon.  The day took a stormy turn however when Pat called shortly after her second race.  He and Peter had left early so that he might steal a few hours work before commencement of Round 2 of The Clinton Wedding v. The Cocoon Theater’s Grimm Tales.  A few minutes later my cell phone blared, the panicked expletives flying across the wireless network the second I said hello.  When he was calm enough to speak, my heart sank as I realized Pat was telling me that he ran over our cranky but beloved Scout, a 15-year old Jack Russell Terrier, in the driveway.  Peter had told him that Scout was behind the car and out of danger but she wasn’t.  “The sound, the shrieking cry, I knew right away what I’d done!”  Pat was already on the way to our vet when he called and didn’t know how badly she was hurt.  All he knew was that her back left leg was bleeding and she was conscious.  I didn’t want to tell Sophie during the meet, especially since I assumed we’d be putting her down.  Scout’s been ill with a kind of doggie encephalitis for years and though she keeps springing back, bout after bout and to our vet’s amazement, I doubted she had the strength to survive this latest catastrophe.  But Sophie overheard me on the phone when Pat called back to tell me the vet was examining her.  She burst into tears with the news, which of course triggered the waterworks in me too.  “What can I do, Mommy?” she pleaded.  I suggested we offer a little prayer.  It’s all I could think to say.  And then my little girl did something that took my breath away.  Right there on the deck of the pool, with frenzied activity all around us, she solemnly clasped her hands together, put them to her lips and nose, and closing her eyes, bowed her head in silent prayer.  For that moment, the world around us disappeared, and I watched in awe as Sophie, still wearing her swim cap and goggles, quietly begged for Scout’s life.  I hugged her so tightly when she was through that her wet form left an almost exact imprint on my clothes.  When the phone rang again, Sophie’s tears began anew but this time the news was good: Scout would be okay.  Nothing was broken, no ligaments torn, but she did have a significant gash on her paw that required 12 stitches.  Our vet was amazed, especially given her age and precarious health.  She would need anesthesia to be sewn up, and she was in significant pain – the lacerations went all the way to the bone, but with antibiotics and pain medication, she should heal.  When I told Sophie the great news, she asked to speak to Daddy so she could hear the prognosis herself.  Relieved but still unsettled, she kissed me goodbye when it was time for her next race.  Yelling over her shoulder, grim-faced and determined, she announced “this one’s for Scoutie.”  She won her heat by half a pool length, matter-of-factly delivering her ribbon to me for safe-keeping as she wrapped herself in a towel.  By mid-afternoon Pat was home with a doped-up Scout, affording Sophie a few hours of vigil before it was time yet again to leave for the play.  Pat, who is still a mess over the accident, stayed home to nurse the dog, and I took Peter with me to the performance.  The stress of the day showed however, because Sophie started barking orders onstage, under her breath but clearly audible, whenever one of the other children missed a cue or line.  It was funny, I laughed along with everyone else, but I knew the antics were born from the day’s traumatizing events.  As soon as the show was over, Sophie ran out to ask how Scout was doing.  She also told us that the director had the kids walking outside before the performance and the spectacle, 22 ducklings in a row, caught the attention of one of the newscasters hoping to catch a glimpse of the Clinton elite.  “We’re going to be on TV, Mom!”  Whew, what a day!  Sophie was dead asleep as soon as her head hit the pillow but Pat and I had a restless night because Scout was feeling lousy and couldn’t stop whimpering.  One more performance to go this afternoon and then we’re through.  Until Wednesday, that is, when Peter turns nine and the Due Process Hearing resumes for three more days.

July 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 4^th, 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

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

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

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 19^th Century, an young adult working in the fields, wearing rolled up sleeves and a straw hat, his sinewy muscles rippling under deeply tanned forearms.  Peter seemed at home there, darting quietly between the slats of the magnificent circular barn, and walking between the apple trees, their fruit plentiful tart with greenness.  Somehow his strange body language became exaggerated in this place, almost as though the environment didn’t require any accommodation.  It was as though he sensed this, and gave himself permission to be free.  His head leaning forward, almost lunging, I watched as he skipped irregularly along the planked walkways, his form shimmering in the heat like a lonely mirage as the distance between us increased.  Happy in the private sanctuary of his revelry, a chaotic storyline I try so hard to penetrate, much less understand, I knew he felt peace in this place, a religious compound that closed its doors a half century ago.  Although his brain often fails to make the connections that most of us take for granted, he understood implicitly the harmony that still permeates this village.  Dr. Federici, when we saw him last month, told us that he knows of several couples who have “given” their troubled FAS adolescents to the Mennonites over the years.  Funny how strange but absolutely logical that sounds.  Peter would no doubt flourish in such a protected, insulated, simple environment, where members are expected to contribute to the extent of their abilities, no more or no less.  Choices are greatly limited but so are temptations; an ideal template for those living with the crippling consequences of prenatal alcohol exposure.  Not only could a youth like Peter be safe and remain safe, he could be productive and experience genuine fulfillment.  The very notion would be entirely intoxicating except for one serious, sobering drawback: the parents must agree forever to relinquish custody, guardianship, and any future relationship with their child.  Although I can envision Peter living contentedly among the Mennonites, I glimpsed as much in a hazy dream during our visit to the Shaker Village yesterday, I cannot envision living without Peter.  In the last declining decades of the Shakers, most of the men had left the movement, leaving the remaining women no choice but to hire male laborers to work and live among them.  If only Peter could reach across the time-space continuum, he might find refuge there in the fast approaching decade of his own adolescence.  Pat and I might find peace too, peace in knowing that we found a place where our Russian son could live safely, in pursuit of a purposeful existence, and where simplicity is a gift, not a hindrance.

July 5, 2010

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

July 5, 2010.  Peter’s newest obsession is water, and like nearly everything with him, it cuts both ways.  The positive side of the equation is that one of Sophie’s swim coaches has been working with him in the morning and thinks he has real potential, something Pat and I frankly never considered.  Swimming is all about discipline, self-imposed discipline at that, and learning and mastering strokes, at least beyond the dog paddle, requires significant motor planning.  For years I religiously enrolled Peter in summer swim lessons, which were more or less disastrous.  The water was cold, he didn’t like people touching him, and he couldn’t seem to move his arms and kick at the same time.  I wound up teaching him to swim myself, and though it’s never been pretty, I was confident that he was safe in the water.  But like so many things with Peter, time has a way of instructing.  Maybe he wasn’t developmentally ready then.  Maybe he is now, I’m not sure.  But wouldn’t it be great if he was?  Wouldn’t it be fantastic if he could follow the routines, experience a sense of real physical accomplishment, and be surrounded by typical, positive role models?  Maybe at 9 he’s ready.  If we did give swim team a try, the coach said he would swim with the younger kids because despite his age, he’d be in the beginning group, which is perfect.  Unsupervised showering and dressing in the locker room however, is another matter altogether.  Pat would likely to have to meet me at the end of practice because there’s no way Peter can attend to the steps necessary to shower and dress while surrounded by a mob of rowdy boys.  He can’t manage these simple skills at home under close supervision.  The whole swim team proposition is riddled with maybes and what ifs and but hows, but still, the possibility is appealing.  The less appealing part of Peter’s recent interest in water, however, has to do with his pouring it on himself, usually in a semi-private place like the bathroom or his assigned third row seat in my Toyota Highlander.  Water bottles are now his new favorite thing to empty, and not via consumption.  Because Peter is both clumsy and prone to disruption, we’ve always limited liquids in the car to just water.  But for the past several weeks he’s taken to splashing water on himself in the sink and emptying water bottles in the back of the car.  It’s not the end of the world – its just water after all, but the behavior both annoys and puzzles.  I’m half thinking that because the water tends to be warm sitting in the car this time of year, he may be trying to replicate the feel of hot urine on his skin, which claims he likes.  I haven’t caught him in the bathroom yet, but maybe he’s using hot water there too.  I can’t think of anything else that would be triggering the behavior, but then again, like so much of what Peter does, often there is no plausible antecedent: just raw impulse and the tools at hand necessary to act on them.  In the past, we’ve weathered lotion-dumping themes, carving into leather furniture themes, defecating themes, spitting themes, stealing themes, and night-wandering themes.  The water obsession is the most benign theme we’ve encountered in some time, so I guess I should count my blessings.  Especially if it transfers even semi-successfully into an interest in organized, and for Peter, brain organizing, swim.

July 2, 2010

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 4^th 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

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 4^th, which is Peter’s 9^th 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.

: : : : : : : : : : :