January 28th, 2008

The Very Beginning is a Very Good Place To Start

Part III: Getting Closer to the Present

I’d spent the greater part of a week or two hand-wringing and analyzing and over-analyzing. Luckily, I’ve got one of those husbands who isn’t afraid to sweetly suggest that I snap the hell out of it, and it didn’t take long before I had circled the wagons and was talking to anyone who knew anything about New York’s Early Intervention (EI) program. In record time, I had Jack scheduled for evaluations by a group of specialists who would determine whether or not he qualified for EI services, and which kinds. This was all between losing my cookies a good two or three times a day.

The results of the evaluations have been a rather surprising kind of good. The evaluations (one by an occupational therapist and the other by a developmental psychologist) didn’t come back with an All Clear like we’d secretly hoped. But, the Something Wrong is actually not so wrong or scary. It’s not the dreaded “A” word that had plagued my nightmares for a couple of weeks. Not that a diagnosis of autism would have been the end of the world—I know Jack enough to know that his kind of Awesome can trump any delay or label, but the person I was really worried about was me. About my ability to be enough for him. Hell, I worried about that when I thought his penchant for flapping his hands together was nothing more than a cute, inventive way to clap. I still do.

What Jack has is something that, after learning as much as I can about it, feels strangely familiar. It’s one of those things that I’m guessing a lot of the kids who grew up with me, and before me, were dealing with, but back then, it didn’t have a name, and the kids (mostly boys) were instead labeled unruly or disruptive or badly-behaved. It’s called Sensory Processing Disorder (SPD). Basically, it means that he has trouble processing or interpreting the constant sensory input that we are all bombarded with daily. Everyone has some degree of this: I, myself, have never liked loud music, for example, and my more obsessive compulsive tendencies (needing hair off my face, needing my finger nails cut short) might be very minor signs of sensory disturbance.

For Jack, it manifests most noticeably in the way he tunes out when there is too much stimuli. He’ll try to hide behind easels or squeeze his body into tight spaces like cupboards when his classmates sing and dance to music. He’ll hum to create a kind of white noise for himself so that other noises will be blocked out. He moves constantly so as to stave off the steady influx of sensory information that surrounds him. It explains so much about his colicky infanthood as well. My sweet babe didn’t have the same kind of “off” switch that most babies do, which would allow him to turn down the volume on the world a bit. As he gets older, I see how this is positively translates into a keen awareness and understanding of his surroundings: Jack doesn’t miss a beat. And the evals also confirmed what we’d always suspected: that his smart skills are off the charts for his age group and he’s pretty much a two-and-a-half year old creative genius. So YAY JACK!

I remember this kid who grew up in my neighborhood and who was in my class during elementary school. His name was Josh. He had a thick head of auburn red hair, and his round face was full of freckles. Josh was always in trouble because he fidgeted in his seat, clicked his pencil against his desk, bounced his chair back and forth, would turn his t-shirts inside out, refused to come out of the cardboard “house” set up in the back of the classroom. I think about him now, and it’s like a million light bulbs go off. Here was a kid who probably hated the way the tags on the inside of his shirt felt against his skin, who, like Jack, would make his own noise against an onslaught of outside intrusions. Of course, Josh was known as a “trouble maker” in our school. The principal would regularly punish his noncompliance by making him sit in a high chair, a fifth grade boy, SIT IN A HIGH CHAIR in the middle of the school cafeteria during lunch time. I think about him, and I want to sink to my knees and cry. But even more so, I want to track down that asshole of a principal and punch his lights out, despite the fact that he’s probably old and frail and has dementia. If I could, I would make that man pay in kind for every time he misread and mistreated that young boy.

But I can’t. I can, however, make it okay for my son. And I will. And that, I have to hope, will make me enough of a mother for him.




Posted by: Sarah on January 28th, 2008
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