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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

Friday, December 09, 2005

The best has happened - the show now has a life of its own. The Toronto Star covered it to a point beyond my expectations. I was on CBC Metro Morning and Global TV and tomorrow we're on Canada A.M. And this is all to raise positive awareness about autism. There is a steady stream of visitors to the gallery making comments in the guestbook like "this is a very important exhibition." I think so. I believe that awareness does change the world one tiny step at a time.

I believe strongly in inclusive education and changing the way we view people with so-called "disabilites." I am currently researching models around the world of inclusive schools -- they don't take the resources and the money that we think they do. And they are so successful in other countries. For reference, take a look at Inclusive Education sites online and the UN Convention on The Rights of the Child, tthe UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities and the UNESCO Slamanca Statement. These documents recognize the human right of all children to inclusive education. Also there is The Ontario Coalition For Inclusive Education.

I am pressed to get back to Adam's programs now. I am concerned that he his displaying some inconsistencies, which may tell me that we have to cut back on some of his programs in order to refocus on some missing component skills. I always feel that if I take my attention away for too long, this happens. It must be a parent's inclination to feel like they are never doing enough. In particular, Adam is having difficulty with making choices. Instead of consistently saying what he wants from two items, he echos both items, or says the thing he doesn't really want (he gets the broccoli and he gags!). We try writing out the sentences (which he likes and can read), but it's not helping with the concept of making the choice. So his SLP at school will give him a blank item (piece of paper) and the item of choice, and repeat it until he grasps the concept. Laura is giving him just the two objects, and that still seems to be the best option yet.

Also, the Neoprene Vest seems to be helping at school. When Adam is motivated, he is so focussed and attentive, but when he's not, or if he's tired, he just keeps moving around. He is seeking out a lot of deep pressure these days -- crawling under pillows and asking for "squish." So the vest gives him some pressure and he seems to enjoy it.

His OT wants to try having a visual box -- a box consisting of visually stimulating toys that he can play with 5 times a day for a limited period. She wants to do this to fulfill his visual stimulation needs. She finds that the visual distracts him the most in the classroom. Although he is easy to redirect and focussed and attentive while doing something, if left to his own devices, most (not all) of the time, he would be looking around the room. I am wondering if the visual stimulation will over-arouse him or fulfill the need. Everything is a test.

He was so tired this afternoon, my Adam. This morning he was so affectionate and snuggled into my arm making the sweetest sounds of contentment. This afternoon, he nested his little head into the crook of my arm and fell asleep. Such a far cry from the days of nursing himself to sleep -- a far cry from the child weaned only two months ago. I tried weaning him for months (years, actually). I tried giving him a bottle from the time he was an infant. He would have nothing to do with it! Then, one day, I decided to try again -- this time with a glass of warm chocolate milk (just a pinch of cocoa for the taste). It worked because he was ready. It didn't work a year ago, or the year before that. One just has to keep trying. One worries so much about all of these steps. Then when they are accomplished, the struggle to get there is easily forgotten. That part amazes me. How we quickly forget the effort. This is the kind of effort an autistic child must make every single day.


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