A Mind of My Own
Posted by Gail | Filed under Autism
Chapter Eight: Advocating At School (Part 3)
When Malcolm went to Grade Three he came upon his first bully. This child, who was smaller than Malcolm, would poke him, call him names and swear at him. The child was a hellion, but his mother was worse and the system didn’t have a clue what to do about him. So I wrote a letter to the school making it clear that if there was another incident between this child and my son, I would be calling the police and filing a formal complaint. That kept things quiet, at least around Malcolm, until the end of the year. The bully continued to wreak havoc in the school and I chose to move Malcolm to another school the following year for a number of reasons, including that child’s continued presence in that old school. (Since my principal and spec ed resource had moved to the same school, next door to where Alex would eventually attend high school, it was an easy decision to follow them).
In Grade Four, Malcolm had a teacher who believed in discipline, rules and learning – things Malcolm understood. Lois had no experience with Asperger’s child and willingly took my reading material and my suggestions when it came to dealing with Malcolm. Everything seemed to be going along nicely until just after the March Break holidays. Then Malcolm went right into the dumper: he couldn’t go to sleep at night, his appetite was way off, he had one and then another toileting accident. He was resisting going to school and kept getting sick, ending with a week-long cold and fever combo that put him in bed for days.
I went into a Mommy-crazed frenzy. There was obviously something wrong, but not for the life of me could I figure out what it was or what to do about it. I spent a half-dozen sleepless nights and tired, stressed-out days pondering Malcolm and his behaviour. Then I went to see my principal. I was convinced this was total school burn-out. As I fanned the tears out of my eyes I explained that I had to see her. No problem, but I would have to wait until Monday since she was having Friday from hell. I headed over to Catherine’s house.
Catherine, Malcolm’s special education resource, had been off on sick leave and we’d kept in close touch. I sat on her couch, sipped tea and bawled my eyes out as she asked questions about him, about what was different, about what I wanted and what he needed. At the end of three hours of sobbing because I was failing my child, I was closer to the truth.
Malcolm was worn out. Intuitively I knew this, but brief bouts of denial and a total sense of incompetence as a mother sometimes leave me confused about the direction I need to take with him.
Malcolm wears out at school. The banging of books, the clanging of the school bell, the shuffling of feet, the drone of lessons, the squirt of ketchup bottles on hot dog Tuesday, sitting quietly at a desk, being a good boy – it all wears him out.
People with Asperger’s experience varying degrees of sensory overload because they are very sensitive to sights, sounds, tastes, smells, and touch. They prefer soft clothes. They like familiar scents. They fixate on certain foods. Some Asperger’s children are extremely sensitive to loud noises or strong smells. Some dislike being touched. In pre-school, Malcolm refused to hold hands with the other children in his class when walking to the gym.
Malcolm’s teacher had been fooled into thinking Malcolm was a pretty regular kid. He had stopped chewing his hand and sucking on his shirt and he hadn’t pulled on his face in a Munnk-esque “The Scream” distortion in months. He looked pretty normal from the outside. But the toll on the inside was significant. He was eroding. And as he wore down, his appetite went away, he couldn’t sleep and his resistance went way down, leaving him susceptible to every disease hanging out in the school.
Coming out of Catherine’s place, I was pretty determined to bring him home for the rest of the year. I’d done it in Grade One, and done it in part in Grade Three, so there was precedent. And that was exactly the problem I was having. It was precedent, and Malcolm’s functional fixedness meant that I could very well be bringing him home in spring term for the rest of his life!
My meeting with his principal, was the following Monday. I had been sleeping a little better so I wasn’t in tears in her office – although I came close a couple times. We talked about what I thought the problem was. We talked about me home-schooling him for the remainder of the year. We talked about the impression that would leave Malcolm with. And we came up with a solution. (Have I mentioned that I LOVE Mary Beth?)
Malcolm would recover from his latest bout of fever and then return to school after the Easter break for a three-day school week – his choice of days. We would make some additional accommodations for him, setting the tone for Grade Five where we planned to do a few things differently. First, Malcolm wouldn’t sit tests in his classroom where he might feel reluctant to ask for help with language. Instead, he would take his tests with his special education resource so that she could explain any language or reframe any questions he didn’t understand. Second, we would try to put more movement into his day.