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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

Saturday, October 29, 2005

My eyes are blurred. I've been up every night this week -- either from 3 a.m. on (Adam's sleep patterns are changing again and he wakes talking about the things he's seen the previous day), or, I've been out until 3 a.m. at fundraisers. Met some genome researchers last night from Toronto Western Hospital.

Then today, I took Adam to the Snoezellen Pool at Bloorview Macmillan Centre. The word snoezellen is actually taken from two Dutch words: "snufflen" meaning to seek out and explore and "doezelen" which means to relax in a wonderful place. The idea is to expose children with various issues to relax and in Adam's case, the visual stimulation and relaxation enables him to talk more and focus.

So I take Adam to the change room -- there is another mother needing the large flat changing table to change her child with cerebral palsy who must be around 7 years old. The girl is listless and her eyes are nearly closed, leaving the impression that she could be sleeping. The mother talks sweetly to her child, getting her ready to enjoy the pool -- a shallow pool where the lights are dimmed so we can see changing-coloured fibre optics, lights and shapes on the walls, with soft music piping in.

Another child -- a young teenager cannot move around much. She is taken from her wheelchair and placed in the shallow water path that leads like the yellow brick road into the actual pool. I'm afraid she is going to drown as she sucks in some water and cannot move her head well.

A young boy -- not much older than Adam is also autistic. He is afraid of the water and screams as he's being placed in it while the bright lights are on. Soon, the lights are dimmed, and he calms down. His mother can gradually take him into the water as they watch the shapes move on the walls and he is relaxed and learning to enjoy the water. He cannot talk.

Adam is delighted (we taught him how to swim with a suit that keeps him afloat -- he was no longer as fearful and he learned how to doggy-paddle with a look of glee). He wants to jump in. He is yelling "water, water!...1,2,3 Rocketship!" as he pleas with me to throw him up in the air on the count of three. He is singing "twinkle, twinkle little star" when is sees the stars projected onto the walls. He swims to the lights, to the bubble tank. He lets me swish him around. He jumps up and down and sings with me in the shallow end. He says "splash, splash" as he kicks the water around.

I felt at odds, really. Adam was having a ball. He could move his body at will. The visual stimulation fulfills his sensory needs so he can talk more (although he is talking more in general at home too).

Here I am talking about CURES for diseases without considering the thoughts and desires of those who cannot move their bodies at will. While Dr. Sacks talks even of paraplegics who learn to adapt, I take a deep breath about my recent arguments and what they imply. I can talk only of the community I am directly in -- the community of autism, and from a parental perspective, not an autistic one. I honour the words written and spoken by autistic people and I encourage them to keep talking about themselves and their perspectives. I can only hope to facilitiate some of this.

I cannot speak for the parents whose children are physically disabled, for instance, but I do know one mother of a child with CP who talks with pride about the major achievements of her child -- milestones that are part of everyday life for the rest of us. These are the miracles that the "abled" world cannot partake in. They make us appreciate life, in all its forms.


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