When Rain Hurts by Mary Evelyn Greene

December 12, 2010

December 12, 2010

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

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


December 3, 2010

December 3, 2010

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

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

November 10, 2010

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 1st 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.

November 3, 2010

November 3, 2010

Halloween 2010

November 3, 2010.  The other night we spoke about the mid-term elections over dinner and Peter asked whether I voted for Daddy.  Rather than embark on yet another Who’s on First dialogue, Pat instead asked, “Peter, why do grownups vote in elections?” “To vote,” he replied.  At age 9, our son still has little understanding of the world beyond himself, despite his exposure to media, family discussions, and school lessons.  Given how “normally” he presents, it’s an increasingly worrisome reality.  The other day he asked if the Civil War was at our house, casually commenting that our yard was peaceful and he liked it that way.  When asked, he couldn’t recall where he had heard about the Civil War, all he could say was, “it’s real Mom, the mens are fighting.”  I tried to explain that it took place 150 years ago, that I had relatives who fought for the South and that the war almost destroyed our fledgling country.  He then asked if my father, who died in 1994, was still fighting, and was that why he doesn’t visit often.  No matter what I said, he couldn’t grasp the idea of a distant past, not even slightly.  There are times when he can envision a future – he’ll make comments about buying his own iPod or car when he grows up, but he has no real inkling that life occurred before the scope of his own memory.  This restricted style of thinking is one of the countless reasons I agonize over Peter’s ability, one day, to navigate independently his environment: to recognize the difference between friend and predator, to make the correct snap judgment in a dangerous situation, or even to remember to eat dinner if there is no one present to model the task.  At our first CSE meeting with the new school the other day, his teacher astutely commented that Peter has difficulty orienting himself in time, which by his age, in particular, can be a major source of confusion and frustration.  She said addressing this difficulty should be a top priority.  Pat and I agreed, of course.  How refreshing that this new teacher is concerned with the same things that worry us.  She realizes that Peter needs to master the fundamentals, like where he is in time, both in the larger context and in terms of daily living, before he’s exposed, uselessly, to grade level lessons such as the scientific principles of electricity, a unit he was made to endure for weeks on end last year.  Maybe, just maybe, we’re now on the path toward real improvement, cooperation, and better spirit.  I do hope so.  Last month Peter announced he wasn’t going Trick or Treating this year.  The decorations that adorned the village neighborhoods scared him, as did many of the costumes.  I suggested he pick out a costume anyway, which he did, just in case he changed his mind, which he also did.  And I’m so glad.  We met up with friends and had a wonderful time, Peter included.  I think the kids enjoyed jumping in the countless mounds of raked leaves best of all, especially Sophie, who made a terrific mummy.  I only hope the villagers forgive the mischief as they inevitably embark on raking their yards all over again.  Dare I say it?  Things are starting almost to feel normal.  Not normal “normal”, but more relaxed, more supportive, less combative and definitely more hopeful.  I ran into a friend the other day – she later emailed to say how wonderful she thought I looked, which I found funny because I was wearing sweats and a t-shirt and I’m fairly sure I had pieces of mulch stuck in my hair.  But what she meant was the stress – she said for the first time in months, stress no longer seemed to be my most prominent feature.  What a nice compliment, and reminder, of what matters, what I must strive for, and what I must never forget to gauge.  The difficulties of raising two children with complex, often misunderstood needs are plenty, but at the same time, the daily joys, the occasional soaring triumphs, the quiet moments – these are the things worth carrying.

October 14, 2010

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

October 6, 2010

Scout Swimming Next to our Canoe (Summer 2003)

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

 

September 28, 2010

September 28, 2010

Sophie's 3rd birthday (July 2005)

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

September 20, 2010

September 19, 2010

Storm King (Sept. 18, 2010)

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

September 13, 2010

September 13, 2010

Poet's Walk (September 2010)

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

September 6, 2010

September 6, 2010

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

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

August 31, 2010

August 31, 2010

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

August 31, 2010.  Peter keeps asking about school supplies and I keep telling him that I don’t know what he needs yet, a half-truth or white lie, depending on viewpoint.  Today he’s going to a water park with the son of one of my close friends, a slight, quiet boy with a sharp mind and sensitive soul.  Sophie and I are spending a girls-only day with the boy’s sister.  We have a few errands to run, but we’re also planning lunch and an outing to the movies.  The forecast high is a blistering 94 degrees, a temperature I abhor unless I’m in close proximity to a cool and inviting body of water.  Sophie’s a little tired of the town pool, however, and since her friend is nursing a sore knee, we decide to plan the day around indoor activities.  As we execute the kid switcheroo this morning, reminding my friend as we say goodbye to take Peter for frequent bathroom breaks, I’m struck with the dichotomy that at times exists within our son.  At the county fair on Friday night, we ran into a boy whom Peter played with during recess in his summer school program.  This child is 11, and as his dad later shared with us, he’s mildly retarded.  When the boys’ eyes met, they ran into each other’s arms with beautiful surrender, as well as a complete lack of social awareness.  Although Peter is higher-functioning than his new friend, he shows no awareness of the boy’s disabilities.  “He’s my best friend, Mom!” Peter proclaims, jumping up and down in time to his buddy’s constant, agitated motion.  The father looks relieved to have someone with whom to tag along.  There’s a great sadness about this man, I sense it immediately, and Pat and I fall into easy conversation with him as we scurry to keep pace with the children.  He’s eager to tell his story, the story of his son, a phenomenon I’ve encountered frequently on both sides of the special needs aisle.  On the few occasions where I’ve had the opportunity to meet other parents in even remotely similar situations, I sing like a canary.  Parenting a special needs child, regardless of the type of disability, is an undeniably lonely, isolating experience.  When there’s a chance to make a connection, when there’s an opportunity to relate, to understand and be understood, we grab it.  And so I listen, intently, and without interjecting too much of our own story, in order to give this heart-broken man a chance to be heard.  He doesn’t mince words or sugar coat the obvious as he knows instinctively that he can speak frankly with us.  Pat and I, just like he and his wife, are lifetime members of a club for which we never sought membership.  His son is delightful in that overgrown puppy way, a fact I can appreciate and enjoy completely only because I don’t have the responsibility for his future.  We exchange contact information when we leave and promise to stay in touch.  Peter and his friend hug goodbye and the father tells us as we’re leaving, with a hint of incredulity, that his son has never had a play date, much less a friend, before.  I email the father photos of the boys the next day and by the following morning the phone rings.  Because Peter’s new friend can’t stop talking about him, his mother calls the next day and asks whether they can stop over.  I’m thrilled, of course, that the boys have another chance to play over the weekend and when its time to say goodbye, Peter waves frenetically, a grin as wide as I’ve ever seen, as his friend and mother drive away.  I sling my arm across his shoulder to let him know I’m proud of the way he behaved.  Perhaps, rather than a dichotomy, Peter’s more like a bridge between two worlds – one typical and the other not.  There are strong arguments against assigning him to either environment, especially when it means to the exclusion of the other.  He’s comfortable and happy around children like his mildly retarded friend, its where he fits in and feels both calm and competent, but at the same time, he needs the social and physical challenge that more typical kids offer.  But regardless of the challenge, Peter’s learning to teeter between two worlds with grace and ever-increasing aplomb; he’s compassionate and sensitive with his less functional peers and when ridiculed or left behind by the regular set, he’s cultivating a sense of stoicism and self-acceptance that at times belies his age and disabilities.  As I finish up tonight, I gaze happily at our son, who’s sprawled across the sofa watching Scooby Doo with Sophie, exhausted but content after a very hot day at the water park.  Sometimes I’m so preoccupied by what Peter needs to learn, understand, and appreciate that I overlook the valuable lessons that his example often offers.  Our son, at times, is a veritable ambassador of good-will and acceptance.  Wholly nonjudgmental about the various gifts people have, or sometimes lack, he instead finds value, at least some value, in all those whose paths intersect his own.  Thank you, Peter, for showing me the remarkable, and beautiful, benefit of your philosophy.

August 30, 2010

August 28, 2010

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

August 28, 2010.  Last week the kids and I, and Lindy, drove to the Jersey shore for a few hastily arranged days of fun and sun at the beach.  We stayed in a cruddy hotel with a wonderfully open-hearted receptionist who made the entire experience tolerable.  Despite some uncooperative weather, the four of us had a great time.  I only wish Pat had come along.  The days consumed by our Due Process Hearing, however, have robbed him of time for even a brief summer break. It seems the two of us are destined forever to waltz in orbit around the demands of raising our developmentally disabled, emotionally scarred son.  Sophie carries her own baggage, at times a heavy, trouble load with which we’re desperate to help her lighten.  Like gravity’s effect upon the moon, our children’s pasts continue to dictate the future course of our lives, to the point where it sometimes seem we have no ability to choose our own path or change course.  Missed summer vacations pale in comparison to the situation hanging over our heads regarding Peter’s impending school placement.  With only 9 more days to go, we still have no decision regarding where our son will be permitted to attend school.  I used our 60 hours at the shore to wash away the insult caused by having to endure, day in and day out, school district “professionals” perjuring themselves in an effort to best the LoBruttos, and of course in the process, poor Peter.  Luckily, it worked.  Unsuccessful but comic attempts at fishing, along with boogie boarding, shell seeking, over-priced carnival rides, and mediocre seafood, all conspired to strip me of my worries.  Our only full day at the beach was cloudy, but it didn’t matter.  Sophie regaled us with her crab-walking antics across the sand as Peter dug endless holes with a well-used yellow shovel.  The next day was beautiful, the waves particularly impressive due to the front that had passed.  We allowed ourselves, with varying degrees, to be bounced and tossed in the surf.  Lindy holding tight to Sophie and me to Peter, we’d stick it out until our laughter became choked with seawater, then we’d scramble to the beach, covered in bits of sand and shell, to catch our breath and rest.  “I’m not going in there again,” Sophie would pant.  But within a minute we’d hear, “Come on guys, let’s do it again!”  We left happy and tired and arrived home, 3 hours later, to Pat’s smiling face and the beautifully affirming knowledge that we were missed.  I don’t know why Peter and Sophie were given to us, I’m not prepared to say it was God’s will, or even destiny, but the challenge, and the privilege, is ours.  Even a few days away had me missing my husband and partner more than perhaps he knows.  I can think of at least a dozen or more people whose temperaments are better suited for daily life with our rambunctious duo, but I know in my heart and mind that the two of us have given ourselves entirely to improving their fates.  As we close in on six years as a family, I sometimes worry that we’re still reaching for that elusive equilibrium, that place where hard work, dedication, and old-fashioned courage keep a family united, turning to each other for both contentment and companionship.  But we’re getting close.  It’s time I let my guard down in this respect.  Our progress as a family, and as individuals, is real and measurable.  I sensed it the minute we walked in the door and Sophie launched into a blow-by-blow description, for Daddy’s benefit, of our adventures.  I also sensed it looking around the kitchen and living room, which were neat as a pin, a welcome home present from Pat.  But mostly I sensed it in my heart, where I felt full with the knowledge that the four of us are bound together not just by the decisions of our pasts but by the hopes and prospects of our futures.  Our children’s needs may indeed dictate the general direction of our family’s future, as is the case in all families, but they need not demand the course.  Our job, as parents and partners, is to appreciate and embrace the difference.

August 17, 2010

August 17, 2010

Sesame Place, PA (Aug. 2006)

August 17, 2010.  Today is Peter’s second day of art camp at a wonderful space housed in an old chocolate factory called Imagination Station.  Yesterday he was very excited, though nervous, to begin this new adventure but he became verbally assaultive as soon as Sophie and I walked in the room to pick him up.  “The juice is rotten!” he hisses.  “I had nothing to drink at snack.”  I know what he’s talking about because we’ve gone through this before.  The design of his favorite juice box changed a few months back and its new persona is something with which he just can’t cope.   Really, I understand.  Peter struggles through so many changes – they’re all so difficult for him and yet some are so miniscule they’re nearly invisible to the rest of us.  If he has to put his foot down about a manufacturer’s audacity to change its packaging without first consulting him, if that’s where he decides to draw the line, then I want to be sympathetic.  But at the same time, I don’t want his obstinacy, his perseverative tendencies, to overtake all reason.  In truth, I also don’t want to throw away a perfectly good case of his favorite juice – a flavor Sophie won’t even touch – because he’s dug his heels in over something nonsensical.  “Let’s read the expiration date together,” I begin, pointing to the stamped “use by” date that clearly says May 2011.  “No, it’s rotten – you want to poison me, you bad mother person!”  I desperately want to avoid a meltdown in this sanctuary dedicated to creative exploration, so I steer him out and mumble something over my shoulder to the woman who runs the program.  Once outside, away from the other children, he regains some semblance of composure and we head toward home.  Over lunch the underlying cause for the assault reveals itself: Peter had first day jitters and it seems some of the “older kids” (all of whom are younger than he) were staring and making fun, among other things, of the way he speaks.  Teasing is a cruel reality when it comes to a child like Peter, and constant vigilance is required to combat it.  “I cried in my head, Mom, but not on my face.”  He can be so brave, our young son.  He wanted to cry – he felt like crying, but he held it in.  How many times has this happened without our knowledge?  Of the handful of episodes about which I know, there are bound to be dozens more, little acts of unkindness, left unacknowledged and unrevealed, in the clandestine recesses of Peter’s fragile psyche.  After lunch I speak with the art instructor, who listens carefully and promises to help ensure tomorrow’s a better Peter day.  Sleep doesn’t lessen his anxiety, however.  He spends breakfast laughing uncontrollably, without provocation, partially chewed biscuit crumbling from his mouth as Pat struggles to corral him.  “You can’t go to art camp if you keep this up,” I interject.  “I don’t want to go,” he laughs back.  A staccato half-squeal, half-moan accompanies every physical movement.  And this is where I trip up: I shouldn’t have brought up the possibility of not going unless I was ready to not send him.  I need the break, I really do – its only three hours, and Peter needs the opportunity to work on his social skills, hopefully learning a little something about art in the process.  Never mind the fact that we’ve already paid in full.  Plus, I have work to do regarding our endless Due Process Hearing, and no matter what I start Peter doing – whether its riding his bike, playing with Legos, or practicing his soccer, the independent activity lasts no more than three minutes, then he’s back to circling me like a lost but plucky pup.  “Peter,” I try reasoning.  “You can do this.  You love art.  You just have to calm yourself down.  Everybody gets nervous when they start something new.”  But he keeps insisting that the other kids stare at him and make faces.  He doesn’t know why, he says, but he insists they don’t like him.  “Did you stare at anyone yesterday?” I ask.  “No way, Mom.  I didn’t.  I swear!”  And that’s when I know I’ve hooked him, the faintest hint of a smile betraying his plaintive voice.  Peter and I spend countless hours working on his at times obsessive habit of staring at people – he can bore a hole right through a person’s skull, and so I know he’s just made a little joke on himself.  “Okay, Mom,” he says, smiling shyly.  “I’ll try.”  When we arrive at camp, I walk him inside where the instructor asks Peter where he prefers to sit for table work.  He chooses to sit with the younger group, some of whom are just four, and I nod my head in agreement.  He’s more comfortable with this age child, and that’s okay.  Yesterday he told me he preferred to sit with the younger kids, and together we agreed he’d make a wonderful “helper”.  I linger near the exit for a moment, sensing his insecurity, but the instructor clearly wants me to leave, her body language signaling that its okay, that she’s in tune to the situation.  I’m becoming more adept at recognizing early on whether a new adult in Peter’s life will help or hinder.  This kind woman exudes helpfulness, and so without further hesitation, I say a quick goodbye and walk away.  My hope is that when I pick Peter up three hours from now, he’ll be full of chatter about paper mache and drawing, and will have forgotten yesterday’s difficulties . . . maybe even to the point of forgiving the crime of changing the juice box design!

August 14, 2010

August 14, 2010

August 14, 2010

August 14, 2010.  Peter’s difficult week continues.  His entire person begins to undulate, vibrate, and gyrate, sometimes simultaneously, at the slightest correction or request.  When he’s like this, his body language resembles more of a personality-disordered belly dancer high on crack than a 9-year old boy.  Our hearing recessed earlier than expected yesterday, allowing me to pick up the kids from my friend’s house in time for Lindy and Peter to have their regularly scheduled session.  That’s the good part.  Routine is key to keeping our son in his happy zone.  The bad news is that we now have one more day of hearing scheduled for next Thursday.  When Lindy came up from the basement at the end of the day, she was shaking her head and laughing to herself.  “He just can’t keep it together right now, Mar,” she says.  “Whew!  He’s feeling it, let me tell you.”  What she means is he’s feeling the stress.  The stress of the hearing, the unspoken worry that hangs over our summer like an angry storm, his recent birthday and upcoming party, and the transition with which he must cope now that summer school ended yesterday.  A few seconds later he leaps up the stairs and catapults himself onto the couch, nearly knocking over a lamp, a low-pitched moan accompanying his every move.  Lindy had plans to eat out with us – we were supposed to be celebrating the end of the hearing, so she reminds him that the two of them could stay home while Sophie, Pat and I go to the restaurant if he can’t pull himself together.  Luckily, he recovers.  Once he was calm enough, I pull him aside and ask him to think about why he’s had such a difficult week.  This is something on which we’ve been working  – his ability to recognize, at least to some extent, what triggers his behavioral breakdowns.  He’s made incredible progress in this area, which makes me very pleased.  “It’s my birthday coming up and school got over,” he offers meekly.  I watch as his left leg wags to some interior rhythm.  Though I’ve corrected the mistake a thousand times, he keeps calling his birthday party, which is tomorrow, his birthday.  Peter knows he doesn’t enjoy a loud affair with lots of kids, so he decided to invite three friends for cake, a movie and then the local arcade.  A boys afternoon out.  But the anticipation is more than he can manage.  “You’re upset that summer school’s over?” I ask.  His lip trembles as he nods his head.  “I miss Miss Katy forever.”  And then a single tear hurdles down his face.  He made a real connection with one of the teaching assistant’s in his summer TEACCH program (which is called PEACCE where we live).  This is not a minor thing.  Peter struggles with and resists intimate feelings just as vigorously as he avoids touch and noise.  Strong emotions overload the unbalanced and carefully guarded way in which he allows the world to interact with him.  The fact that someone he’s known for 6 short weeks has been able to wiggle her way into his heart is amazing and cause for celebration.  So we talk a few minutes about why its okay to feel sad about leaving someone you care about but that because of their friendship, memories of him will always stay with Miss Katy and he will always have his memories of her.  Maybe a little too conceptual for Peter, but he hangs on every word nonetheless.  I can tell, though, that he’s still gearing up, I’m getting better and better at reading his signs, and so I wait for him to continue. “Okay Mom,” he says.  “But I don’t want four grade!  I want summer school.  I get smart there,” he proclaims as tears begin flowing in earnest.  “And I’m dry,” he whispers.  Only my anger, and my deep commitment to not reveal it, at least openly, to our children, keeps my own eyes dry.  Our son is smart enough to know that he’s found a place where he fits in, where he can learn at his own rate and experience the joy and satisfaction of completing his work himself, but its not within our control to send him there.  “Everything is quiet, Mom, and the teachers don’t let me be wild.  My body feels good.  I’m good here!” he cries.  And then I ask, “which school do you think is better for you to be at all the time, the summer school or your regular school?”  His unequivocal answer is summer school, a program modeled after the TEACCH methodology that’s run by a public corporation formed by New York State to assist local school districts.  Much of our town has puzzled over why the school won’t send Peter there year-round.  I always assumed it was a budgeting issue but after yesterday, after hearing it from the horse’s mouth, I now know otherwise.   Now I know the cost of sending Peter to this program year round is equivalent to the cost of maintaining him in an inclusion classroom.  So what in the begonias is going on here?  Are school districts now allowed to mete out revenge against parents that challenge their collective wisdom by withholding appropriate, cost-effective options to their disabled children?  All I can say at this juncture is that I hope the injustice and heartache we’ve suffered, that the harm our child’s endured, is an aberration and not an epidemic.  I can feel myself revving up.  Although I’ve done a lousy job of protecting my family against this particular cancer, I’m fairly skilled at safeguarding the rights of others.  Bullies should not be tolerated, whether encountered in childhood, family, career, or government.  Peter’s going to a birthday party today for a boy whose looks he can’t recall, though he’s known him since first grade, because they haven’t seen each other since June.  Pat and I use the rare opportunity of Peter’s all-day absence to spend some special one-to-one time with Sophie.  We take her fishing at a nearby lake, where she gets the chance to try out her new pole, a birthday gift from my sister Patty.  Unfortunately, because Pat and I have no idea what we’re doing, the equipment remains unchristened.  We have a great time anyway, watching Sophie wrestle mammoth frogs on the shore as Pat and I continue in vain to snag something, no matter how miniscule, on the line.  Later we stop by a favorite creek and let Sophie catch minnows with her net.  We share little private jokes as Pat skips rocks and I take photos.  Sophie keeps interrupting to ask what we’re laughing about and we playfully shush her away.  The subtlest hints of fall are present, a slightly different quality in the air, a dusty darkness to the leaves, the way the water sits low and lazy, and we’re happy together, in nature and with each other.  Those who wish our family ill, who try to test our commitment to our children, even our marriage, ultimately will fail.  I believe this today.  I’m reading a book right now entitled the Boy from Baby House 10.  It’s about a disabled Russian orphan, Vanya, who now lives with his adoptive mother in Pennsylvania and will soon be heading to college.  The Russian system of government, with their still Soviet-era concept of family and obligation, almost rubbed this boy off the planet by assigning him, at age 6, to permanent bed rest (i.e., cage) at an adult insane asylum.  The orphanage and health authorities did this even though he had a lively mind and a reputation for charming anyone honest enough to notice with his wit, compassion, and intelligence.  Decisions regarding this child’s life, the book reveals, often hinged on personal, even petty, alliances and hostilities.  I can’t help but think of our situation as I finish this book, which is both horrifying and uplifting.  We liberated Peter from Russia, where surely he’d have met a similar fate, only to have the fragile egos and trivial grudges of American public school officials dictate to our family whether and when he will be blessed with an opportunity to thrive.  It took an army of people from diverse backgrounds and nationalities, and who were strangers to each other, to save the life of that disabled but vibrant youngster from Baby House 10.  We thought the saving part of Peter’s odyssey ended on October 25, 2004, the day our children’s adoptions became final.  But apparently, our son’s in need of an encore rescue.  Who, in the end, will serve his cause?  Who will be part of Peter’s army?

August 11, 2010

August 11, 2010

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

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

August 9, 2010

August 9, 2010

Peter is 9! (Aug. 4, 2010)

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

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

August 1, 2010

August 1, 2010

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

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

July 17, 2010

July 17, 2010

Underwater Pete (July 2010)

July 17, 2010.  My head spins with the sickening realization that I’m a fool, an incredibly naïve fool.  By requesting Peter’s educational records, I learn yesterday that I’ve been the target of criticism, suspicion, malice, and entrapment since Peter began first grade in our picturesque, adopted town of Red Hook, New York.  It’s not just been the school psychologist who has maligned my character, questioned my motives, and actively sought to turn our confused, insecurely attached son against me.  While I was striving for an open, honest relationship with Peter’s educational team, voicing frustrations, concerns, and victories as they arose, many in this group of teachers, aides, and other service providers were interviewing Peter and cataloguing my every word and action.  Instead of working on the goals in Peter’s IEP (individual education plan), his “team”, with the school psychologist leading the way, spent a good part of the last three years peppering Peter for information about what goes on in our home.  How we discipline him, whether he wants to go home (yes, his teacher asked him this in May), and whether he’s afraid of us (me).  Where do these intrusive questions fit within the state mandated curriculum? I’ve been trying for the last three years to explain and educate Peter’s team about the complexity of his disabilities, particularly the double whammy of FAS and the effects of institutionalization, but I now realize my message, at times my grief and pain, was not received with compassion.  And shame on me for thinking that it would be.  Shame on me for thinking these people, with a few exceptions, would want to understand the difficulty and complexity of our journey, that they had the capacity for critical thinking and the good will to reach across the aisle and lend a helping hand.  We have fought tooth and nail to win Peter’s trust and affection, what’s known in adoption circles as a healthy attachment, and the school psychologist and others have been actively sabotaging our efforts every step of the way.  Had they the intellect or curiosity to read anything about attachment disorder or FAS, they would know that poorly attached children almost always target the mother; moreover, that these kids are adept at triangulating, lying, and manipulating their way toward temporary favor.  Peter loves me, I know he does, but he would sell my soul in a second if he thought it would please any grown-up to whom he was speaking.  Even Peter’s medical issues, which at times terrify us, have been the source of gossip, mistrust and circumvention.  This past year, the school nurse, in cahoots with the school psychologist and Peter’s teacher, asked to see copies of his EEGs, test results from his urologist, and sought to gain direct access to his cardiologist.  She even discussed at least one plot with the principal, informing him of her plan to tell me that she was not a cardiology nurse and therefore needed permission to speak to the doctor to better understand Peter’s needs.  In the email to the principal, she states “it would be interesting to see if she [meaning me, Mom] balks at this request.”   Are we neglecting Peter medically?  Are we over-attentive?  What exactly is the concern?  I’m becoming nauseated as I write.  There clearly was never any possibility that Peter would receive an appropriate education in this school.  I’ve been banging my head for years against a steel wall forged from malice and distrust.  As Pat and I spend sleepless nights worrying over Peter’s cognitive regression and ever-spiraling confusion, the people legally charged with his educational care for 6 hours a day are preoccupied with catching me in the act of a fictionalized misdeed.  Dr. Federici and Dr. Aronson warned us long ago that the present situation in which we find ourselves is a dangerously risky scenario experienced by scores of adoptive parents of children like Peter.  Certain schools, like Red Hook, seem to possess the audacity as well as the arrogance to act as judge, jury, and unfortunately for Peter and his precarious brain, executioner.  We just didn’t think it’d happen to us, or more accurately, I didn’t think so.  I’m the one that opened my heart, my feelings, my fears, and my hopes to virtual strangers with the idea they would one day become partners, allies, maybe even friends.  Our family can’t weather my making these same mistakes again.  I have to get smarter, stronger, and a whole lot wiser.  We may have adopted Red Hook as our hometown, but its school, the fulcrum of this family-centered community, has not adopted us.

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