Monday, April 26, 2010

My Special Boy

In honor of Special Education week (if, in fact it truly is SN Week and not just some old Facebook campaign that's been circulating), I post this essay of mine that's been kicking around for some time. Jamie is turning 7 in June, and will be entering his first full-inclusion class for the second grade. This news is just days old. Our journey with him has been at times harrowing, and inspiring, not just in his progress and hard work but in the work of the unexpected kind people we've met along the way. Here's how it started...

My Special Boy

Jamie’s regressed into a lot of baby talk lately. “Ba da beee ba ba.” He says this in a very high-pitched voice as he crawls all over me, twirling my hair. He has a hair fetish, and at the age of just 4, seems to have a foot fetish as well. “Mommy, your feet look hot. Take your shoooeees off.”

Since December, 2006, my son has been deemed technically Special, with a capital S, at least in the eyes of the New York City Board of Education. Of course, to me he always was and continues to be a genius of capital proportions. He memorizes songs from his favorite musicals (The Music Man and The Sound of Music trump others at the moment) and his favorite song from the latter begins “How do you solve a problem like Maria?”

This has become a sort of family joke because Jamie was, in his first year and a half of nursery school, the Problem, with a capital P. While other kids were playing with the little oven peacefully next to one another, Jamie was “talking with his hands” which meant hitting the other children, pulling their hair, yanking on hoods of jackets, thus choking other children, and doing it with a frequency that created pits in my stomach when I’d drop him off in the mornings. Parents who were intoxicatingly friendly at first grew downright chilly in the hallways and at parent meetings. Meanwhile, Jamie was unable to grasp the concept in any long-term way that this was bad. That he hurt people. That he got too close to them when they didn’t want to be near him. And yet, in the short term, his reaction was always the same: He would want to hug the child he’d hurt, regardless of whether they wanted him to be near them or not, and he would cry and feel terrible about himself.

One staff recommendation led to another. We sought outside counsel from psychiatrists and pediatricians. He had multiple evaluations. New terms were flying at us like “low muscle tone” and “sensory integration.” Cognitively, Jamie seemed fine, but was angry and easily triggered. It was agreed that he could be eligible for Early Intervention special services (occupational therapy and speech) that might help him regulate his physical actions and communication skills. His services escalated until he had his own Special Education Instructor at the school, also known as a SEIT, a body guard pulling him out of social situations like circle time, when he would twirl his dream girl Coco’s hair without asking, or jump up and race around the room. But pulling him away from these problematic situations seemed to have a horribly negative effect on his self-esteem. Christmas break brought him the boot… with one tearful conversation with the school’s director we cleaned out his cubby for good. Yet it also brought about, ultimately, our unexpected relief.

I’ve had to relearn what Special Education means. I was reluctant and even petrified to be faced with this term; he’s not mentally retarded, I quietly told myself. I’ll admit I had visions of severely autistic children rocking in corners, or even, in an especially shameful moment, the Special Olympics, which somehow manifested in my mind as a track race with wheelchairs. When my own son found his way, miraculously, into a Therapeutic Nursery school with one available slot, I was scared. Scared he would be on a track that he couldn’t come back from. College would be out of the question.

Five months into his new school setting I could see as bright as the stars the difference that a good, meaning “appropriate,” fit makes for your child. Jamie’s new environment was incredibly structured, down to the minute. His teachers were trained in Special Education, and for seven struggling boys there were three of them. His self-confidence began to reemerge, and his speech and fine motor skills improved. In Jamie’s new school, he wasn’t getting “No’d” all day; for the first time he was getting “Yes’d.” As he grew less frustrated, tense, and upset, so did we. Language skill focus on conveying emotions, and he uses his new words to tell us he’s angry, or sad; he even tried to tell me what “jealous” means a few days back. It takes Jamie a moment longer than “typical” children to gather his thoughts and to process them into following commands, but understanding that and giving him the extra beat he needs gets easier by the day.

It’s a story that’s by no means over yet, but for now I’m so grateful for his newfound status, and can even thank his old school for showing us the door, and leading him into his light.


  1. Wow-what a beautiful boy; he looks just like you.

  2. Thanks, Rachel, for this clear-sighted yet moving piece!