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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Sunday, September 25, 2005

 
I am moving around now and hoping to take Adam to school this morning. So much happens when you're not looking. I need to really know how Adam is doing at school this week. I didn't even know that the language group he partakes in has begun...no one told me when I called the school this week, and the shadows didn't tell me either.

I will try my damndest to find a school that fits him. I don't want him in the public schools where they will funnel him into the special needs classes. I will be looking for integrated schools. As difficult as those curriculuae can be to organize, I believe in integration, philosophically.

My team of therapists is great, but I still have to stay on top of paperwork, Adam's programs. No one cares as much as I do, and I'm always trying to up the ante, to find a new way of doing things, or use the most effective way. It's a constant quest on what and how to teach. Sometimes, I wish I had someone who could expedite the management of the team.I am always trying to stay on top of everything at home and school, and I take a large part in what is important to teach. Everyone has a different style of teaching, and he is doing well by them. So this is the most important thing. Yet, with my pneumonia, I do notice that letting go a little makes me feel uneasy. Just being part of taking him to and from school let's me know how he's doing because I get to see and hear for myself. When I'm lying in bed, I don't get to see a thing and I don't have a real handle on how his week went. It all sounds good, and he seems well, so I'm sure he is fine.

This is the obsessive part of being a mom with an autistic child. Maybe some moms don't do as much or trust more people... so called "experts," but I don't. His life is in my hands. I don't believe anyone will care about him more than I will. Adam is engaged for almost the entire day. His down time is spent with me. As he's engaged with therapists, I come and go. Adam is such an active guy that if he wasn't engaged, he would have ended up in repetitive activities. This way, he learns and he is happier for it. He plays a lot and always wants to play with others.

I do notice his peers in the neighbourhood have surpassed him in play and verbal skills. They play together, group together...Adam tries to join in but can't keep up with all of them. It always appears as if he's a step behind. At school, there are enough varied kids, that he seems to do better there. There are other non verbal children as well as autistic ones. Some kids in Adam's neighbourhood group are quieter than others. I just hope he finds the crowd that he can interact with. Everyone has to find where they belong.

I can't say that I don't worry. Some days I do, but it depends on HOW I think. If I think of those other kids in the neighbourhood and the cafe klatches I'm missing because he can't keep up, I may feel down. If I think about how far he has come, that he actually does make some buddies at school, I feel fine. I can't expect him to be like everyone else overnight and there's a part of me that doesn't want him to be like everyone else. I do want him to feel socially competent, though. Enough to have a few friends.

He's three and a half. I don't have him toilet trained yet. It's another thing I have to work on when I'm better. I'm going to cancel all therapy and people in the house so that it's just Adam and I for a couple of days doing this. He's so good with me. And it's really something that should be done with mommy.

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