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.

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.

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