When Rain Hurts by Mary Evelyn Greene

June 26, 2010

June 26, 2010


Peter, my nephew Steven, and Sophie (St. Pete Beach, FL, May 2008)

June 26, 2010.  I spent Peter and Sophie’s first day of summer vacation in our third week of the Due Process Hearing.  With still no end in sight, we received yet another affirmation from the school district that they’re unwilling to discuss settlement.  As of now we have dates scheduled into August, including August 4th, which is Peter’s 9th birthday.  I don’t think anyone involved in the hearing besides Pat and me sees the irony in the fact that none of them, including those who espouse their unfailing commitment to our son’s educational and emotional development, i.e., the school, can suggest or commit to a single alternative date.  But that’s okay, we’ll make up for it.  Peter knows who loves him, its wonderful to be able to say and believe that, and no one can take that away from us.  After yesterday’s considerable shenanigans were through, we picked up Sophie at her friend’s house and met Peter at the town pool, where he spent the day with his best buddy, Montana.  He gave me a big wet hug, brown as a surfer and with eyes groggy from spending all day in the sun and water.  When we get home he tells us that before they went to the pool, he played video games, watched TV, and Montana’s oldest brother, a nice kid who’s 16, wrestled with them and gave the boy’s Dr. Pepper and lots of sweets.  With that good news, we put the kids to bed early and I succumbed not too long afterward.  I fell asleep to the click click of Pat’s keyboard as he squeezed in a few hours of work.  He was as tired as I, but the nagging worry of falling too far behind kept him energized a while longer.  This morning the kids don’t wake until 8:30, which is a minor miracle, so Pat and I head down to breakfast feeling much more human and ready for the day.  Within minutes it’s apparent the quadruple whammy of electronics, wrestling, caffeine, and sugar are still coursing through Peter’s body, wreaking mayhem on his delicate nervous system and metabolism.  As is often the case, we’ll pay the piper today, and possible tomorrow and the next, for yesterday’s lack of regimen.  On all fours, Peter bucks himself wildly on the tiled kitchen floor, his knees already off the ground before I realize what he’s doing.  When his legs come crashing down, as gravity always insists they do, he howls in pain.  His bewildered expression confirms that he didn’t foresee the consequences of his actions.  The rest of the morning proceeds similarly.  My son has morphed into a throbbing, pulsating bundle of raw impulse with two moderately bruised knees and a wicked summer tan.  When I head barefoot upstairs to put laundry away, I step onto various urine-soaked spots on his carpeting.  I also find Sophie’s toys stashed under his bed and soiled underwear stuffed behind his dresser.  Where there’s urine on Peter’s floor, there’s usually urine on Peter, and sure enough, I find him downstairs getting ready to play outside, completely unaware or unmoved, I’m not sure which, by the fact that he’s leaving a trail of piddle behind him.  I guiltily relish the knowledge that in a half hour I’ll be left alone in the house for a considerable chunk of time.  Pat’s taking the kids to his mother’s because his brother and family are visiting for the day.  I have cross-examination to prepare for our next hearing date and so I’m meeting them later, around dinnertime.  It’s extremely difficult to work with the kids in the house, especially Peter, even more so given the aftershocks of his complete freedom yesterday.  As I gather my hearing materials and prepare to work, I find myself surprisingly calm, and without resentment.  We’re fighting for a proper educational placement for our son, a program that can stretch his brain toward higher function rather than confuse it into submission and eventual mush.  An important and necessary battle, certainly.  But what’s clear is we’ve already won the war.  Peter’s not going back.  One way or another we’re keeping him safe, preserving the promise that’s left in his brain from further deterioration; that in itself is both gratifying and comforting.  It’s like his wild, carefree day yesterday.  He had fun but at too high a price.  He’ll suffer from the after effects, which means so will we, much longer than he reaped the benefits.  And it’s really no different with the school.  The marginal social improvements simply aren’t worth risking further cognitive decline.  It’s a simple cost benefit analysis.  The unfortunate part is that the school’s done their own cost-benefit analysis, and I guarantee it’s not a metaphorical one.  Inclusion is cheap.  An appropriate program for Peter, a program designed to stimulate his brain but not his body, a program based on a neurocognitive approach such as those used with classically autistic children or the brain injured, is not.  But he’s going to get it, one way or another, even if it means implementing one myself.  Dr. Federici’s recent evaluation once again has confirmed for us that Peter’s not the boy that can fly high all day and bounce back.  His brain, his very person, is too fragile.  It’s taken nearly 6 years to teach Peter to love and trust.  I will never again allow personal agendas, or in some instances, maybe even vendettas, plunge our son into an abyss of regression from which his heart and mind might never again emerge.

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