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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, January 01, 2006

 
It's New Year's Day and we're headed back home today from Miami to Toronto. Not really looking forward to the dank and cold. I write this while Adam awaits to make his final visit to the beach with Bubby while I pack...he enjoys playing with the TV buttons, no matter how many times I say NO. I figure at least a million times, and maybe, just maybe, he'll comply. The compulsion to turn buttons on and off seems stronger than I am. Nonetheless, he does listen to me most times.

I've been looking at the Dan Marino Centre for Autism here in Miami. Next time I come down, I want to check it out. One thing I liked (just from viewing it online), was that the centre's therapists all collaborate, much like what I do with my own team. OT's, SLP's, and other therapists meet weekly to discuss what each child is learning. If a child is doing Mr. Potato Head (I saw this in their promo video online), the OT will also develop motor skills by having that same child draw Mr. Potato Head. I've been doing this for two years. It's been so important to build comprehension about Adam's world. I still strive, with my team that is, to build more synchrony (I always thing that having someone who can really manage and who knows about how important curriculum development is, would be the ultimate for Adam -- he needs a program that keeps him interested and challenged while also working on areas where he is challenged). We struggle with curriculum building (none of us are educators per se). I have very high expectations and I think for the most part, Adam has an excellent team of people and I've been able to build likely a great team of people. The key is for the parent (especially in the absence of centres like the Dan Marino Centre) to be really involved. A parent has to be involved in that case too. Teaching occurs every day, every moment, in every setting. Yes, I feel bad when Adam cries. I want him to be happy. But he must respond when I ask him something. I must wait him out for him to tell me what he wants. Otherwise, he will be a frustrated man.

We are going home and all I think is what I have to do for Adam when we get back. The sense of urgency never leaves me. He is turning four in April. He was diagnosed at 19 months. The first book I ever read, like most parent's, was Catherine Maurice's Let Me Hear Your Voice. According to her, Adam should have been cured by now. So either she is very successful at making most parents feel utterly inadequate, or we all quickly learn that her version of the story isn't all that accurate. On the one hand, I feel I have implemented the best resources for Adam and on the other, I feel there is never enough time in the day to implement the things I want to try for him. I think right now of a mom I talked to in the beginning who implemented a 50-hour a week ABA program for her son, and how she said to me he was in a regular school but never wanted to talk about autism again. All of this puzzles me. Is her child really ok? Did he suddenly turn non-autistic? I don't believe that he turned typical, but instead he learned to function and become less confused about his environment. This is what it is all about, isn't it? Getting our children to function in the world. But is denying his autism respecting him? I really do have such a hard time with denial. Some children will learn to function in a "typical" environment, other's won't. We really have to listen to the autistic -- I am trying so hard to understand autism in order to help, and respect my son.

He has gone to the park first with Bubby. I luxuriate in a dark cup of coffee before I get busy again...something I wouldn't have considered a luxury before Adam. Here, in a different environment, I chase him down the hall, ask him to come back four, maybe five times, insist on mands, ask him questions, keep him from stimming on sand by using it in different ways so that he can still enjoy it, but build on it and understand what he can do with it, teach him how to pick up seashells and put them in the pail, bring them back, count them and stick them in the sand...

It is time to pack our bags and go home. It's a New Year and the goal for Adam this year will be to get him ready for JK and ultimately a regular school, in essence, attending. When Adam is attending, he is so ON. I also want to help him with his reading skills. With all of this, I believe he is capable. I hold high hopes for him. I expect him to have his Barmitzvah and I will be overjoyed. I expect that he will graduate high school and go to university -- all the typical benchmarks of success. I speculate at the other unexpected successes he will bring, and all the possible jobs he may be able to do in life. I will be with him every step of the way. I will find the people to support us who believe that this goal is achievable. And when these goals are achieved, whenever they are (timeframes are quite irrelevant, actually), I will know every memory, every step it took to attain them.

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