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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

Thursday, December 15, 2005

 
For those of you who were looking for the segment on Canada A.M. yesterday, it has been postponed to air between Xmas and New Years.

In the meantime, I have refocused on Adam again. He is so cheerful these days. But I need to do more to make him talk and become more independent. Nannies and loving grandparents just put food in front of him and don't give him choices. In a rush to get to school, we don't give Adam enough time to dress himself. We are not giving him opportunities to discover, try and make mistakes. When he's pushed, he does so well, but it does take a great deal of patience and budgeting of time. There is a price to doing exhibitions and writing books -- the price is less time for my Adam.

I went to The Alan Waldorf School yesterday, which is not the school for autistic kids. They claim to be co-educational, but after inteviewing a couple of schools now, I can see how talking the talk and walking the walk are two completely different things. The principal said they would take him but I couldn't talk to a "remedial" teacher (hate that word), until I paid the $100 deposit for registration! She went on and on about how the school "taps into the energy of the universe." Medieaval penmenship is a requirement as well as drawing for every single subject -- the student notebooks look like artifacts but I wonder how much they are actually learning. I asked that principal if a child with motor difficulty could use computers. There was no flexibility -- the penmenship seemed more important than the content. We all know that it doesn't matter how we write, it matters that we UNDERSTAND. In this school, every teacher looked like a hippie -- one teacher may teach Sanskrit while yet another teachers about the Saints and yet another into gnomes (yes, it's true). So when it came right down to it, she said, while using her fingers as quotation marks, that "so called high-functioning autistic children" may not be able to move too far in the school, to which I wanted to reply - why would they?

Discrimination abounds. It is disguised which is the most disgusting kind. It is disguised by principals saying they are "open" to having children who are different, but really, they are not and push you away with rigid programming and lack of flexibility. It is disguised by friendly voices, and the hiring of "remedial staff" and "educational assistants," most of whom know nothing about autism. As parents, we are invited in for tours just so those schools can't be blamed for being prejudiced. As parents and autistic people, we are pushed to the margins so that others do not have to deal with us and our children.

What kind of society are we? THIS IS NOT GOOD ENOUGH. I want to expose all this ugliness and each and every school I encounter that does this to us. I want to tell you of all the good I find in the world as well, so that gets more exposure in the end than those ignorant people that run schools like The Alan Waldorf School, The Willow School, and The Mabin School -- all who have turned us away with disguised discrimination. (The Mabin said to us that there is not enough room in the classrooms for shadows). At least the Willow School -- who told us they have one autistic child as a favour to someone they know -- said straight up that they don't take autistic kids. In the end, ignorance about autism is no excuse and furtive discrimination for those with any special needs is akin to any other kind of racial or ethnic discrmination.

We have schools that are fractionalized, even an autistic community within itself, divided in what we believe is good for our children. There are more schools popping up for kids with Learning Differences. The Public School system tries to integrate and I still have to look at the ones that have been recommended. Discrimination abounds but it always takes me by surprise. I mean, my son is beautiful in every way. I am always shocked that he, and other innocent children like him, are subjected to such naivete.

I believe that we parents are given assignments. Every child requires something. There is a great irony when I hear another parent complain that their otherwise unscathed child is not developing the way s/he likes -- I marvel at the luxury of that complaint.

And yet everything about Adam is a gift. He has taught me to slow down, to appreciate every single step. He doesn't lie, he is not greedy like some other children. Buying him toys where other children would become spoiled does not effect Adam in the same way. Toys are his tools for learning -- much more so than non-autistic children. I see him playing with toys and exploring him in a way that a one year old does easily. Where other parents get caught up in which Ivy League School they would prefer their kids to go to, what cars to buy them (my husband does this with our other kids, so I see it in my own household!) I will receive simpler and what I think are richer gifts -- the gift to learn what it means to be human -- of patience, kindness, of frustration and triumph, the pain of isolation and the utter joy of when he will gain a friend, or even a girlfriend one day. When Adam celebrates his Barmitzvah, it will be a momentus occassion -- instead of getting caught up in the carnal hype of the party -- the party will be woven from the painstaking steps to get there -- and those are the best parties of all. Happiness really does come from the simple things that the rest of us take for granted. From talking and reading other parent accounts, I am preparing myself for the future while also taking in the moments as they occur. Moments of bliss are constructed of painstaking work. I can't write naively about the joys of my son without discussing the pain and frustration which is part of the package.

So I do worry that Adam isn't speaking like his fellow autistic peers. I consider it my fault because he is capable and I'm still doing too much for him. So I do get tired sometimes, impatient too. I make mistakes. All one can do in life is keep trying.

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