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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, March 13, 2008

 

A Person's A Person...









Since Adam has started typing, it's hard for me to write on this blog. What do you say to a little boy who says upon my return from a night away:

"Glad you return."

"Why are you glad mommy has returned," I ask, wondering what he will say.

"because hell forgets boy."

What do you say to that -- a boy who understands what the world is for him, or perhaps makes of him.

What do you say to a boy, not yet six, who refers to his peers as "loquacious" or that "talking is oppressive."?

What can I say to all my theories about Adam when they no longer are theories but are real with each typed letter?

No longer do I have to speculate what letters mean to him -- the fact that he loves the letter A which makes him feel "euphoric," or of his affable nature that recently revealed that "jokes are a staple for the atmosphere." Thank goodness his sense of humour is greater than mine!

What do we make of "autistic behaviour" when Adam, who has explained that when he gets ill, the reason for his constant movement is because it "makes me feel normal," -- a word many of you know that I find relative, but which is his version of normal, meaning, not ill.

What do you say when your son tells you, his baby teeth just falling out behind those still cherub cheeks just beginning to thin, "i feel numbers," but to sit and wait for more?

You see, I am waiting now, which has slowed me down a bit. Adam has begun to email his half-siblings, telling them what he did in his day. He is beginning to use the computer to communicate with others, and as for sharing his words, I must obtain his consent. So, while he can type now, I question where we all have to draw the line. What is the difference between advocating for our children and what we can talk about in public? I liken it to talking about our children with utmost respect for their right to privacy -- that not everything they say and do is for public consumption. It is why I take issue with parents who talk about how their children "hit" them in public to display autism as something terrible. (this is a special note to that certain Ontarian who ambushed me on CFRB during the Joy of Autism: Redefining Ability and Quality of Life event...how perfectly timed was that "hitting" for radio?)

Now, I've tried to be careful in the past, but certainly I am thinking of this more now -- if I ever crossed that line and what a shame it is to only be waiting for verbal or written consent. I think I always have tried to represent Adam and autism with pride. That has been the point of this blog.

I know also that we parents talk like we would at kaffee clatches, reaching out and yearning for support as we figure out how to raise and accept the special literacy -- behaviour, idiosyncratic communication and all -- of our autistic children. We have gathered together for mutual support, but I think that consent piece, that piece where no one is too little to be respected, needs to be thought about again and again and again.

For as Horton says (Adam's favorite book of late), "a person's a person no matter how small." What about, a person's also a person no matter how autistic or disabled??

You see, autism is not on display here -- if you want that, tune into Larry King Live where Jenny McCarthy, Jerry Kartzinel and Toni Braxton go.

No, our pride for who we are is simply worn on our sleeve.

Small people, all people should be proud and I may ask Adam write a review on the Horton Hears a Who movie which comes out this weekend.

10 Comments:

Blogger Camille said...

I look forward to Adam's review. I wish that Horton's voice wasn't the voice of Jim Carrey who is associated with some really idiotic statements about autism via his girlfriend.

I really appreciate your circumspect way of describing Adam. I don't like to see children's daily live described in too much detail. People deserve privacy. I think in some way autistic people above others crave privacy. Not that putting one's life out there means one is not autistic, but I think those who have put their lives out there pay a heavy toll and frequently regret having said so much about themselves.

3:04 PM  
Blogger Another Autism Mom said...

I can't wait to read his review! What a smart kid.

3:33 PM  
Blogger atelier jax said...

I appreciate your blog and your views. Your son is an inspiration to many that cannot express themselves. As parents we have a difficult line to walk, protect or publicize. I wanted to post because I noticed negative feedback about jenny. I just do not get how any parent could ridicule Jenny and other celebrities for putting the spotlight on autism. People need to be aware that our kids exist and in record numbers! My son is only 4.5 YO it is only 2 YO that he was diagnosed - in this day and age it is criminal that so many peds do not have a clue about Autism, the signs, etc, that we just go along with what docs tell us to do. Sorry, but I don't agree - we need more inspiration, more awarenss, more discussion, more questions asked and more questions answered, the CDC owes the public this and so does our govt. I believe in an anything it takes attitude to make this happen. If it means that some day my son will have an easier time then it is my responsibility to do everything I can to make this happen for him. If it means more money to help figure out a cure, then count me in. jax chachitz

5:37 PM  
Blogger Patrick said...

I feel you have been quite tasteful in choosing what to blog about, not overly intrusive into his person. Of course he will have his own opinion about that, but I know from what I have seen on some other blogs that you have been quite well reserved in your presentation.

and Yay Adam!

5:48 PM  
Blogger abfh said...

I also like the word "loquacious." The syllables flow so well together, like a big juicy piece of fruit. When I was in college, I was delighted to discover that there really is a kind of fruit called a loquat.

Does Adam like to try new foods that have interesting names? If so, he might enjoy loquats, or kumquats -- that's a fun word too, and kumquats are in season right now.

Looking forward to his review. :)

11:41 AM  
Blogger Alyric said...

Isn't it absolutely fascinating to see what Adam's thinking. I really like that fresh slant on things. Reminds me of Tito who writes with the same originality, naturally different to Adam, but the same flavour.

Something jypsy maintains: assume competence. I'm thinking that intervention should adopt another one - communication first, behavior second, since the first is likely to resolve the second.

12:46 PM  
Blogger LAA and Family said...

Your sensitivity for your son's privacy is very admirable. I hope that I am doing the right thing in sharing what I have of my son's and family's life on my blog. I do not share everything, just what I think might be helpful for others who are on a similar path as us, and especially for parents whose children are newly diagnosed with autism. I would have given anything 6 years ago to have the kind of "camaraderie" in autism support that I have found via blogging just this past year.

3:36 PM  
OpenID dancingmom said...

I think you have been very respectful of you son and at the same time have managed to help a whole bunch of people. His communications are interesting and delightful and exciting.

abfh and alyric, both of your responses here made me smile for different reasons. I'm grateful to "travel" in the midst of so many insightful people.

karen in ca

5:48 PM  
Blogger aspiemom said...

He is a blessed kid to have you as his mom. I think it's wonderful to see a parent so respectful!

9:25 PM  
Anonymous amy said...

parenting autistic child is hard. bravo to you for having such patience.

9:23 PM  

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