When Rain Hurts by Mary Evelyn Greene

August 11, 2010

August 11, 2010


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

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

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8 Comments »

  1. May you find the beach restoration process for your soul – and Peter’s and Sophie’s and your husband’s soul.

    It has been invaluable to Susan and I to have a couples’ therapist working with us for the past 18 years. Katie has been in her residential therapeutic school for about 15 months. We as a couple are just now at the point where we are starting to look at each other and see if we still like each. I think we do, but we are both different than when we started this process – infertility, adoption, raising Katie, and her sister, etc. etc. Our therapist used the term horrific recently to describe what we had been through. There’s truth to that. Love and caring and determination and perseverance and everything else as well.

    Chris

    Comment by Christopher Duncan — August 11, 2010 @ 3:45 pm | Reply

  2. Oh Mary, I don’t know what to say…you (especially you) and your family are in my prayers and I wish for you to be able to look back on all this (in the not too distant future) and say “I/we fought our hearts out for our son and WON!!!” Your determination, drive and tenacity are remarkable ~ and I wish I lived closer so I could lend a hand!
    Sending you lots of love, support and prayer,
    Meg

    Comment by Meg Coldwells — August 11, 2010 @ 5:11 pm | Reply

  3. “…days spent cleaning up the mess the school generates inside our son’s brain as thoughtlessly as a serial litterbug.” That phrase instantly reminded me of how I felt about the public school system when my children were very young and we lived in Virginia. With a nebulous “policy” that no one could provide in print, open classrooms, chaos in those classrooms, lower level skills than should be taught, and an experiment with having grade school children ride on school buses with raucous, foul-mouthed high school teenagers, when my kids got home from school I felt I had to spend the rest of the day undoing all the damage that had been done. And that was with perfectly healthy kids! I can hardly imagine how all of you get through each day with Peter and the damage done to him. I so hope that the right situation will be found for him and for you, and I send my love.

    Comment by Kathleen — August 11, 2010 @ 5:37 pm | Reply

  4. You are a true warrior. Peter is so lucky to have you as his mom!

    Our son had numerous eeg’s which never showed “seizures”, but a QEEG showed problems in his temporal and frontal lobes
    which were responsble for his rages and impulse control issues. Don’t know what seizure meds Peter is on but some are
    better at targeting certain areas of the brain than others. They have really helped our son.

    Comment by Cathy — August 11, 2010 @ 6:25 pm | Reply

  5. I wish I had something to offer you that was real. You are in my thoughts and if hope and strength can pass through the internets I’m sending some your way. I still believe in the good fight. And that good will win over evil. I haven’t reached your level of fighting yet.

    When this is over and you have won! I hope we can chat sometime. I’ve been researching neuroplasticity and think there are things out there that can help our kids brains. I’m hopeful anyway.

    Kick ass on Friday!

    Comment by Kristine — August 11, 2010 @ 9:53 pm | Reply

  6. You’ll all be in my thoughts on Friday, as you often are. You can do this! YOu’ve triumphed over big wrongs before and will again. Love to you all!

    Comment by Jenny — August 11, 2010 @ 9:56 pm | Reply

  7. Dear Mary,

    I am the mother of two Russian boys, 8 & 9, they were adopted in 2003 and 2005 from St. Petersburg. I’ve spent the better part of the afternoon reading your story. Mine is similar, but on a much smaller scale. I have the feeling that I will be spending much of the upcoming school year trying to determine if their current school is the right place for my youngest, and I am already nervous about his teacher assignment.

    I want to wish you luck with your school district hearing and I hope you have the opportunity to confront them with the contents of that file as well as some of the other bizzare behaviors of the teaching staff. You probably have enough there for a lawsuit.

    You have my contact info should you ever want to compare notes.
    Good luck!

    Comment by Lisse — August 12, 2010 @ 5:31 pm | Reply

  8. Silly question perhaps, but do you have petitions that anyone can sign on your behalf? This is such an outrage. I live in Raleigh, NC very close to UNC where the TEACH program was established and I know how much it does for kids like Peter. Prayers and positive thoughts your way. That school system is committing a grave crime. I hope you have lots of locals reading your blog so they know about it.

    Comment by Amy FitzGerald — August 15, 2010 @ 12:52 pm | Reply


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