When Rain Hurts by Mary Evelyn Greene

May 4, 2010


Mystic, CT (June 2009)

May 4, 2010.  Today we filed our second Due Process Hearing Request in 14 months.  Thirty pages long with twenty-seven attachments, it tells our educational story in painstakingly grueling detail.  At the very least, the school district will have to spend significant money on attorney’s fees to prepare and file its answer.  But that’s not why our document is so lengthy.  Because the school has put us through a haunted house filled with trick mirrors and smoke screens, we’ve no choice but to lay it all out, gory incident by gory incident. The school simply doesn’t appreciate our handouts, our books, our statistics, our experts, and generally what has become our doctorate level knowledge regarding educating and rehabilitating children with FAS, attachment issues and the other countless disabilities that plague post-institutionalized kids like Peter.  I get it.  They want and need to be the experts.  We’ve offended their sensibilities, their pride, maybe even rattled their confidences, all in the name of helping our son.  Perhaps it really is arrogant of us to acquire such specialized knowledge about these matters; after all, it’s not our careers or professional reputations that are at stake, just our lives, our family, our children’s welfare, and our marriage.  Through a system derived from blood, sweat, and tears, we send Peter to school more or less well-regulated every day but then face a completely unregulated child once school’s dismissed. Our hope is that the Hearing Officer, after reading our voluminous and woeful tale, might declare the LoBrutto family has endured enough, that their most troubled member, Peter, deserves an appropriately tailored educational opportunity that will concurrently allow his family to recuperate.  With a special education program designed to keep Peter regulated throughout the day, while hopefully improving his math and literacy skills, we just might be in a position to reclaim some semblance of manageable home life.  Domestic tranquility is not the goal or even a dream.  Hysteria, screaming, self-hitting, defiance, anger-driven urination, and mood swings so extreme they make the Jim Carreys of the world seem sedate – these are what plague our daily lives and from which we seek relief.  Yesterday I noticed a familiar odor and so I asked Peter whether he peed his pants at school.  The perfunctory answer, of course, was no, that he was dry, but then I looked more closely at his stained shorts and his tune quickly changed. “I peed a little, Mom, not so much.  I was dry, but then I weren’t.”  I had no choice but to feel his clothing, which had dried just enough so that the urine no longer dripped.  When I asked when he did it, he eventually replied “a little at reading, then some more at recess, and then just yesterday [meaning a little while ago] in the playroom.”  This morning his teacher emails that he peed at 9:40 am.  So just like I did yesterday, Lindy marches him upstairs and makes him take a shower.  “We pee in toilets to be clean, to keep germs off our bodies.  When we pee on ourselves, we need to wash.”  This is what she tells him.  I hear him vacillate between screams and maniacal laughter as the echo of the shower sounds above me.  An incredibly fierce and brief thunderstorm rolls through our patch of land shortly after the water stops.  Sophie is ready for horseback riding but wants me to call her instructor and cancel.  She’s terrified of thunder.  Despite the wind rustling the newly leaved trees, I’m about to tempt her into going when a pinging chorus of hailstones interrupts the effort.  A few minutes later Peter and Lindy rush downstairs and the four of us sit on the kitchen window seats and watch as the hail bounces off the grass like rubber gumballs.   It’s strange to admit, but this is the best part of my day.  The fierce but localized storm raging outside while I huddle with my terrified children and our loyal, talented Lindy.  I can protect my children against thunderstorms, at least for the most part.  It irks me no end that I can’t protect our son against a school district more intent on acting like peacocks in a parade than helping a little boy that they must realize, once the pageantry of public education is past, will at best flounder through life but at worst will suffer the consequences of a series of damnable decisions.  I can protect Peter from the dangers of springtime thunderstorms, Sophie too.  But I’m not at all sure I can protect him from the storms raging inside his head, from the inevitable consequences he’ll face one day because his actions were driven by an impulsive, unremediated, and highly dysregulated mind.  This future, this reality that keeps Pat and I rubbing our foreheads with frustrated foreboding while the rest of the world sleeps, is the reason we’ve filed for hearing again.  We can’t keep this pace up indefinitely, its too wearing, draining, and not nearly entertaining enough to hold our interest.  We’ve been dickering with the issue of Peter’s schooling more or less for the last four years.  It’s time to forget the skirmishes and call out the brigade to fight the big fight once and for all.  We need to do it for ourselves, for our daughter, and last but not least, for our son Peter, who in the eyes of God, if not man, will always be an innocent who deserves protection against all storms, whether natural or in this case, manmade.

4 Comments »

  1. Good for you. I will meditate on the highest outcome. Take good care.

    Comment by Amy — May 5, 2010 @ 3:34 pm | Reply

  2. You are a good writer. God speed in finding something that works and can bring healing for your family and most importantly, for Peter.

    Comment by heather finck — May 5, 2010 @ 3:44 pm | Reply

  3. Hello,

    I just discovered your blog and I really like the way you write. I recognize a lot of things having a boy 7 years old with autism, and your son reminds me of mu own child in many ways.
    It gives perspective to hear that’s is not only in France you have to fight against school and teachers that don’t want to do anything for your child. Here in France its really bad for autistic kids, either they are in institutions or at home with their mothers, seldom in regular education. My son is because I fight about it. Now we are soon going back to Sweden, my country, to have better schooling and care for Gustav, my son.

    I just wanted to ask if you are doing an ABA program with your kid? Gustav has made some huge progress only with an homemade ABA program designed by me.

    Thanks for a great blog
    Maria

    Comment by Maria Forest — May 5, 2010 @ 5:41 pm | Reply

  4. Your reference to Jim Carrey just had me dying laughing. Now this is just a thought, and only what I’ve experienced with my kiddo. I had to really, really slow down the day, every day, of just the minimal of activities for my child – when we were in the pull-ups dillema stage. For some reason, and I don’t know what it was, but any extra activity or stimulation (as my daughter perceived it) would start the wet pants situation. When life was boring (but I viewed it as very sane :), my kiddo actually had less accidents. I know you have another child, and I don’t, and it’s not fair maybe that she can be in activities, whereas Peter may need a very almost mudane routine to his day, but it’s just an idea. It sure helped my kiddo start to see what was going on with her body, because everything else was so very routine.

    I really do enjoy your perceptions of your school district personnel. Yes, they are laughable. I’m glad you are going at it full force. They deserve it for being so not humane. I often wonder about these types of educators and their lack of feeling for little ones. They are likely all in the wrong jobs. Yes, I have an amazing grasp of the obvious.

    I will keep my fingers crossed that they let Peter and his family get on with a better life, with Peter in an appropriate educational setting. Everyone deserves peace.

    Comment by Lori — May 6, 2010 @ 11:44 pm | Reply


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