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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 15, 2006


Through the Looking Glass

I watch Adam observing the dust particles spotlighted by the beam of sunlight through the window. Daddy tried to make him pee on the potty until I heard "mom, mom, mom...come!" He was happy to see me, obviously not wanting to sit to pee, but more interested in the dust particles happily dancing in front of his eyes. Yesterday, it was the reflection of water against the wall, again aided by the sun's reflection. He was swimming with grandpa in the pool of their condominium, and the water performed a dance like it was just for him.

I've heard other people with autism express how they can SEE the air moving. My Adam is intrigued when rain or snow is falling from the sky -- no small miracle in his eyes, I presume.

He is interested in putting on my sunglasses -- whoa -- the world must look interesting through those, or putting the coloured water blocks to his eyes and then to the window, to see how the outside looks all blue, yellow or red. These are quiet moments, totally entralling for Adam. His babbling stops and I want so badly to see what he sees like I am missing out on one great miracle, or secret, exclusive to his eyes, his world.

Other days I want to give him rose-coloured glasses - the kind that might make the world look like a jollier place. A mother's interest to protect her son.

Adam is busy today -- Sunday. He has O.T., P.T. meeting with his new consultant with our lead therapist and I'm meeting a possible new therapist. If I have time to write more today, it will be by the graciousness of my husband....

Adam is in a session now with his new consultant and our lead therapist, Laura. He is tired after O.T. and P.T. and barely eating because of a stomach virus that's been plaguing us on and off all week. But he always has such a happy disposition. This part of me leaves me amazed and wanting to be like that -- although his happiness must be, in part, genetic.

I feel like describing my days as cup half full or half empty ones -- perhaps I'll begin a daily barometer so you, the reader, can tell from which side of the fence I will be talking about our lives and autism. Today has been a waffling kind of day. The weekends are tougher because I have less supports around. I began thinking about freedom as standing in the Starbucks line with a bunch of other adults. Ahh...and coffee -- definitely associated with Nescafe moments.

Does Adam feel free? Is he affected by "the big black nothingness"(Donna Williams), the sense of imprisonment? Will he as he gets older? "Exposure Anxiety is a invisible cage and to those who live with it, that invisible cage is either their prison warder-monster-saboteur or their saviour, helping them to cut off, shutdown and keep the world of overload at bay." (Williams, p.83) Overall, freedom is based on perception -- entirely resting upon our daily barometers. Freedom can exist in the mind even behind bars, I've heard. How much is autism a prison within? And then there is the prison outside of autism, those that the rest of society constructs.

How much of looking at dust particles is Adam's prison, or personal world, or escape? "It's like trying to remove a parasite which has become finely intertwined with the person's own functioning; they may respond to this `help' as though it were an assault on selfhood...the self of mind which may be free, and the self of will which opposes the desires and needs of the mind..." (Williams, p.83) When I read that I can't help but think about the box, the way of looking at the world, depression, and all of that which suck like parasites on all of us.

I have to move on, paradox keeps tripping me up!

Now to MacLeans Magazine: The Next 100 Years. One Child's Journey to 2105 - How She'll Live, Love and Never Really Die. By 2055, scientists state that there "will be a cure for everything." Yikes. Consider this want ad for a mate:

Tall Blonde. Attractive SWF 29 who is educated looking for SWM 25-35 who is of good moral fibre, monogamous, yet extremely loving and playful. DNA screened for all neurogenerative and metabolic diseases including diabetes, Alzheimers, [Autism] and Parkinsons. Carrier of longevity gene.

Not only will we live forever, but the species that we are attempting to create is perfect. What does that say about my son and his future? What does that say about society's true goals for supporting and enabling the "disabled," and of acceptance of difference? I certainly never wanted to live that long, not until I had Adam. Still, I do not want to live forever as I believe it will effect the quality of my life in the sense that if we have an endless supply of something, we cease to appreciate it.

Yesterday, I laid down on my couch and watched the air move. I watched the clouds drift by on that windy day, undulating swiftly. Sadly, I was missing the transparent coloured blocks.


Blogger SquareGirl said...

Oh Estee...this was such a lovely, heartwrenching and beautiful post. Thank you, thank you, thank you so much for sharing...

11:43 PM  
Anonymous Anonymous said...

Your column touched my heart because the basis of true success is understanding and love.


8:48 PM  

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