After occasional teaching in New Zealand and a brief, desperate bid to teach in a bizarre Toronto private school, I landed my first contract public school board job in a Toronto “Self-Contained Behaviour MID” classroom. Being a wide-eyed, excitable new teacher, I was very optimistic that it would be “no problem” for me to launch my career in such a class.
In the meantime, I was feeling significantly less hopeful about what to do with my brother. With his high school life being officially complete, I was Googling everything under the sun with the search terms “Ontario”, “disability”, “adult”, “programs”, “options”, etc. At that time, I didn’t even know he was officially autistic. The process was like trying to herd puppies in a snow storm. I was zooming from one voicemail to another, trying my best to keep track of who I was talking to and where they were recommending I go to seek further help and support. Invariably, this game of passing the buck would end up with me calling the same organization or person I started with. It was (and often still is) demoralizing, to say the least. You know those anxious dreams you have where you’re asking tonnes of people for help only to receive blank, zombie-like stares from all of them? That’s how it felt. “I’m sorry, we are unable to help with that, but you may want to try x, y, or z…” became an all too familiar refrain.
That’s when I began learning the first lesson of supporting someone with complex needs: don’t take no for an answer. Some may say that the meek will inherit the earth, but they most certainly will not inherit the resources and services for a loved one with disabilities. I discovered that if I speak to someone via email or phone, and they say that they will get back to me about such and such, that I have to call back the very next day and ignore the part of my brain which knows I may risk coming across as annoying or even rude. Don’t forget about us! Don’t forget about us! is the mantra for getting the supports you need.
At school, I was also struggling. Having had no experience or training in working with people who had emotional or behavioural exceptionalities, I was on a marathon of fails. The first time I had a student suddenly jump across the classroom to pummel a classmate for no apparent reason, I knew I had some serious learning to do. Every one of the kids in my class was different to one another in their behaviours. And then there was Timothy (not his real name).
Timothy was autistic. Anything would set him off. A sound, a movement, a word, a look. In a room with half a dozen other kids with serious self-regulation issues, he was the bellwether. Looking back, I realize that Timothy had a sixth sense for anticipating conflict in my class. He was almost like a human alarm. His scripting, shaking, and moving around hysterically usually was a precursor to a fight in the room. Each day was so exhausting. That year I developed a full body rash for what I realize now was stress induced eczema.
To use the popular urban proverb with a twist, I’m not sure how or why I ostensibly ended up with my “brother from another mother” as one of my first students ever. Timothy exhibited every single strength and need my brother did. Strangely, at the time, I don’t recall explicitly making this connection in my mind. Was it because I was compartmentalizing my professional and personal challenges? Was I too concerned with simply surviving each day?
It’s too bad that my students didn’t have a teacher with more knowledge and experience in special education. I look back on that year as a constant stream of mistakes building upon mistakes, likely making any behaviour issues my students had worse.
But if it wasn’t for that school year, I’m not certain if I would have started my journey into learning much more about how to help my own brother. Because of my experience with Timothy, I read everything I could find on Autism. I had to. There wasn’t a place I could go where it wasn’t staring at me in the face. I traversed website after website, read any book I stumbled upon, and tried every strategy I encountered, no matter the legitimacy of the source. Even with that, I still had a long way to go (ten years later, I still do). Perhaps the biggest difference maker for me was learning about the power of communication. For all those years, I didn’t realize that many of our family problems with supporting my brother were due to a complete misfiring and comprehension of communication signals.
Part 5 soon.