When Rain Hurts by Mary Evelyn Greene

August 19, 2013

August 19, 2013

Assateague Island, MD (Aug. 6, 2013)

Assateague Island, MD (Aug. 6, 2013)

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

June 8, 2013

June 8, 2013

Peter's Pokemon drawing (June 7, 2013)

Peter’s Pokemon drawing (June 7, 2013)

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

May 5, 2013

May 5, 2013

Mudge Pond, Sharon CT (May 4, 2013)

Mudge Pond, Sharon CT (May 4, 2013)

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

January 23, 2013

January 23, 2013

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

November 7, 2012

November 7, 2012

New Jersey (October 2012)

New Jersey (October 2012)

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

October 18, 2012

October 18, 2012

Fall 2005

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

September 19, 2012

September 19, 2012

September 15, 2012

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

September 12, 2012

September 11, 2012

Maine (Summer 2005)

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

August 18, 2012

August 18, 2012

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

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

July 15, 2012

July 14, 2012

Peter tubing with his cousin Danny and daughter Amelia (Boone, NC, July 2012)

July 14, 2012.  The air quivering with heat and lake levels low from lack of rain and blistering temperatures, we greet the scorching day with folding chairs in arms, intent on staking out a shady spot amidst the dusty, burnt terrain.  Sophie, Pat and I have taken the one hour trek to Green Chimneys, where the annual family picnic is being held at a nearby sister facility.  There is an inflatable obstacle course on the lake for the kids to climb and navigate, but the water is too low and so the kids, mostly boys, stare longingly, arms folded over bare chests, at the now unattainable goal. Pat and I play volleyball with our kids and before we know it, boys of various ages and abilities have joined us on either side of the net.  Soon an energetic if not disorganized game ensures.  Sophie, no longer the epicenter of her parents’ attention, hangs her head and walks away.  Later, Pat and I enjoy a few minutes’ chat with the founder of the school, Dr. Sam Ross, an octogenarian zealously devoted to his mission and the kids he serves.  Still full of energy and verve, I can only imagine the robust force he must have been in his more youthful days.  He is a beloved leader of young minds and hearts and I watch as he surveys the picnic, the mass of healing children and parents, his rheumy eyes benevolent and triumphant, a portrait of pride derived from a lifetime of selfless work and accomplishment. Peter is glad to see us but a little grumpy from the heat and the realization that we are together today for only a few hours. The separation between child and family is unnatural, intuitively wrong, and we all do our best, in our own ways, to ignore this fact so that the reality doesn’t overwhelm and smother what is meant to be a happy day. I try to stay busy with both kids and we spend a lot of time swimming in the lake.  My family shouts playful jeers as I’m made to pass the deepwater swim test, just like the children. Peter and Sophie clap afterward as the lifeguard writes a fat “X” across my hand, memorializing my success.  Pat watches from the dock with towels in hand.  For the most part, Sophie is fine as long as it’s just Peter and us, but when I start talking to other kids or adults, she slinks off sulking, face transformed into an angry caricature of herself.  She resents these outings, the attention given to Peter that is more streamlined and less demanding than the daily routines of home. She doesn’t appreciate that our time with Peter is limited for now and that the nature of our relationship is therefore different – at least temporarily, from our relationship with her.  Though I try to reassure her, there is little I can do to alter this fact.  She has us 24/7, for better or worse, and Peter does not.  After an attempt to chase a few rubbery burgers with several cups of water, we head over to another part of the grounds where a climbable water slide has been set up.  One of the counselors sits atop the inflated climbing wall, ostensibly there to maintain order and safety, but he’s spraying the kids in line below with a hose, setting off rounds of gleeful protest.  Pat and I, seeking yet another spot of shade, strike up a conversation with a couple that recently enrolled their 6-year old as a day student.  It’s not long before we’re swapping war stories of contemptible treatment by our respective school districts.  Forever amazed by the fact that although individual circumstances differ, the overall plot remains unchanged, I listen with amusement as the mother, an educator herself, shares with us that she shoots certain individuals in her district a not so discrete bird whenever their paths cross.  So many Green Chimneys parents are combat veterans who’ve fought their districts tooth and nail to get the appropriate placement for their special needs children.  I’m glad we’ve met a few more veterans today; shared experience breeds hope and comfort and reaffirmation that the prize was worth the fight.  Earlier one of Peter’s friends eagerly approached, wanting me to meet his mother, whom he sees only rarely.  He is a sweet but troubled boy with a difficult background, always happy to lap up the extra interest and attention I try to show him whenever possible.  His mother matter-of-factly tells Pat and me that once she works through her own issues, she’ll be able to bring her son home.  The love in her eyes is apparent but there’s also a deep sadness and lack of confidence emanating from within.  She is the other face of Green Chimneys, a mother fighting just as hard for her child but for very different reasons.  When the picnic winds down, we decide to take the kids for an early dinner and ice cream.  We aren’t quite ready to say goodbye and are grateful Peter’s social worker approves the impromptu off-grounds request.  When we drop him back at school, later than we planned but earlier than I’d like, we remind Peter that he’ll be home the following weekend and that it’s only a few days away.  We kiss goodbye and hug each other tightly.  Then, as I plunk myself back into the car for the long and often quiet ride home, I turn my attention as a mother back to Sophie, one hundred percent. This unnatural shifting of familial rank and place throws her and the rest of us off.  I’ve come to appreciate that this pendulum effect is just one of the many forms that payment for the price of progress takes.


June 10, 2012

June 9, 2012

Assateague Island, MD (Memorial Day Wknd 2012)

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

June 4, 2012

June 4, 2012

Assateague Island, MD (May 24, 2012)

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

May 1, 2012

May 1, 2012

Image

Shaker Village, Hancock, MA, April 28, 2012

May 1, 2012.  I struggle to keep my voice calm and cheerful as I listen to Peter on the phone, which has become our lifeline to each other as surely as it was when Pat and I dated long-distance, NYC to Atlanta, 15 years earlier.  Dropping him off at Green Chimneys last night, we shared the now familiar ache derived from having a 10-year old child separated, more days than not, from the rest of his family.  “When I’m discharged, Mom,” he asks plaintively, “can I join the Boy Scouts?”  It’s an unexpected question, Peter never having expressed any interest in Boy Scouts in the past.  “I don’t want to be bored when I go home,” he explains.  “I know I gotta stay busy.”  On occasion we carpool with another Red Hook family whose teenage daughter also attends Green Chimneys.  When we arrived back at school Sunday night, the teenager announced that she was being discharged in August and will be attending a different but less restrictive special needs all-girls boarding school next fall.  Peter didn’t catch the part about her going to another “sleep away” school, only that she was being discharged from Green Chimneys, and I didn’t have the heart to correct his thinking.  I know Sunday’s conversation is what sparked his sudden interest in discharge, which is of course the ultimate goal of all Green Chimney residential students.  Despite knowing that this has stirred up his homesickness, I’m nonetheless struck by the fact that he has developed enough self-awareness to know that he needs constant structure, that free time is one of his mind’s worst enemies.  When I speak to him on the phone, listening to his doleful voice, I long to tell him that soon he’ll be back with us on a permanent basis, that “sleep away” school one day will be a thing of the past, but I reply more carefully.  The truth is I don’t know when Peter will be coming home, he’s making great progress in so many areas – like social skills, continence, speech/language, and daily living, but at the same time he’s demonstrating little if any gains in terms of his constant, chronic need for supervision and redirection.  It’s only been 10 months but the reality is that he may always need the 24/7 external brain that Green Chimneys provides.  I fully appreciate that his improved emotional and psychiatric stability might quickly deteriorate were he back home where the level of constant intervention that Green Chimneys supplies simply cannot be replicated on a continuous basis.  It’s a harsh reality and one that I push from my mind with some frequency.  I miss Peter terribly but console myself by recognizing that I might never have felt this way, that we never might have been capable of this closeness, had I not fought for and won his love and trust.  When he’s home now, whether for just a weekend or a longer break, I have learned to relax in his presence and enjoy our relationship without the constant burden of having to teach, re-teach, redirect, or provide consequences.  For the most part, I no longer have to teeter along the precipice of enjoying my role as mother and protector while constantly aware that disaster and chaos could plunge all of us into darkness at any moment.  But Peter doesn’t understand this, he couldn’t possibly, and frankly, I hope he never does.  I don’t want our son ever to think that he’s a burden, that the effort needed to care for and protect him is more than we are equipped to handle.  And so as I speak to him on the phone, I distract him by reviewing when he’ll be home next and what our plans are for the upcoming weeks.  I acknowledge that he misses home and that I miss him too, but I do my best not to let his wistful voice tear at the fabric of the faith I have in our decision to enroll him at Green Chimneys.  In so many ways, the school is an oasis, both for students and parents.  I have to remember that it’s a place of growth, acceptance, and healing and that its existence is an extremely positive presence in our lives.  But here’s the thing: I also can’t forget that positive change, at least in our case, is not without toll.  As we say goodnight, I propose that we meet on the moon in our dreams, a game Peter and I always have played and one that makes him truly smile.  I tell him to look for a polka-dotted spaceship and he tells me that his will be blue with a big yellow star on the tip.  We agree that I’ll bring snacks and he’ll bring a soccer ball.  I tell him I love him and kiss the phone, knowing that in our dreams, we are always together.

December 22, 2011

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

November 2011 (Red Hook High football field)

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

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

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

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

Thanks – Mary

November 17, 2011

November 11, 2011

Filed under: FAS,fetal alcohol syndrome,Green Chimney — whenrainhurts @ 3:57 pm
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The Rail Trail, Millbrook, NY (Nov. 13, 2011)

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

August 29, 2011

August 29, 2011

Dutchess County Fair, Aug. 26, 2011

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

July 3, 2011

June 30, 2011

Mudge Pond, Sharon, CT, Father's Day 2011

June 30, 2011.  “Don’t forget to bring my Pokemon cards,” Peter repeats as I tell him Lindy and I plan to visit today.  “I need ALL my stuff, Mom.”  Hearing his voice, so upbeat and focused on the here and now, his mind incapable of worrying over the future or dwelling on the past, offers both comfort and distress.  Ten days ago, Pat, Sophie, Grandma and I took Peter to Green Chimneys School, a nearby residential treatment facility, to live, grow, and hopefully heal.  It turns out I’ve been living a lie these last few years, telling myself I could handle Peter’s escalating needs, his unpredictable thoughts and warp speed impulses.  No one wants to admit her child is more than she can handle, especially an adoptive mother, and especially someone like me, who takes pride – or at least solace, in a certain stubborn resolve to march through adversity.  But his attempt a few weeks back, to catapult from a second story window in the middle of a tantrum, disabused me of that notion once and for all.  No psychiatric hospital would take him after the window incident – we were told his management needs exceeded their current staffing capabilities.  So we held our breath, crossed our fingers and said a little prayer until his admission day at Green Chimneys arrived.  We also bolted his bedroom windows shut, used an alarm on his door and kept him downstairs all day every day until bedtime.  He’s been at his new school for 10 days now, and we can visit whenever we like, though he can’t come home or leave the grounds for one month.  After this period of acclimation, we will bring him home every other weekend and for holidays and school vacations.  My hope, laced with regret but steady with resolve, is that this experience can soothe his tortured soul in a way our home, our love, our daily family life, could not.  A child like Peter has a way of consuming one’s thoughts, and it’s no different – at least not yet, now that he’s at Green Chimneys.  This renowned school was an original pioneer of animal-assisted therapy and the unfulfilled farmer in me drinks in the many sights of the lush, well-tended farm and immaculate barns and pens.  Peacocks roam the grounds freely, as do guinea hens and other birds.  The year’s crop of baby lambs, goats and cows are still small and cuddly enough to illicit involuntary sighs of joy, and there are miniature horses, ponies and standard horses at almost every turn.  Children are riding horseback while others help train a group of 4-month old Golden Retriever puppies slated to become therapy dogs.  I immediately wish I could work there, both to be closer to Peter, whom I ache for despite the obvious peace and calm his absence has brought, and to be a part of this healing community of people, livestock and pets.  Right now Peter is still uninterested in the animals, the flies, the odors, the work involved are more than he wishes to navigate.  But with time, and tremendous support, he may come to understand that there is a path, a way to live in and view the world that makes sense, where effort produces results and where good choices lead to positive outcomes.  Right now his mind, his world, his every waking minute is filled with fiery chaos, and for any number of reasons, Pat and I aren’t the ones who are going to be able to douse the flames.  It’s a difficult thing to admit, but I know its true.  We have brought him so far, but we reached a wall we simply could not scale.  He needs more.  Does he mourn the temporary tear in our family’s fabric?  Is he wondering why he’s sleeping away from home, or consider when he’ll be returning?  I don’t think so, and for Peter’s sake, I hope not.  It’s our job to shoulder those burdens, to decide what’s best for him in the context of what’s necessary for the rest of us.  So right now I assure him that I’ll do my best to locate his beloved Pokemon cards, and I look forward to taking him in my arms so I can feel his silky skin and hopefully convey – on a cellular if not conscious level, that he is cherished.  I need him to know that he is and always will be my special boy, a child who held my heart hostage for years but who with bravery and brawn has transformed us both into persons with unexpected capacity for resilience, compassion and love.  

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