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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, January 27, 2006

 

Between a Rock and a Hard Place

I run, with therapists, a facilitated playgroup at my home. It has been going very well -- a mix of kids with and without autism. But I have to admit, keeping the mix is getting harder.

Yesterday, a mom pulled her kid (autistic) without warning because there were other programs she enrolled him in -- she said. That really irked me -- not because people naturally move on, but because she did this without warning, so that the dynamic of the group is now affected.

I am also looking for a new therapist too...one of my leads is pregnant, and I'm finding it really hard finding a therapist with experience who is willing to work fifteen hours a week.

Running a home-based program, without agency support is rewarding, frustrating and terrifying some days, like all of Adam's progress and development is at stake because of what I do, or don't do for him. If I hire an agency here in Ontario, I don't receive adequate communication, (my team talks weekly, meets bi-weekly), and the therapists (the one's I've met), have been doing something that looks and talks like ABA, but it's not ABA.

I think most parents who use agencies, go to schools, or try to find play groups might also feel caught between a rock and a hard place. Speaking for myself, I feel we have to seep through the system, find a way to glide through the cracks, in order to get the services and education that Adam requires. Work with the system the best you can, I say to myself, and after that, do it yourself.

Today, tears well in my eyes about Adam's social world...he is just beginning to really observe and WANT to do what his peers are doing. This wouldn't have happened without our playgroup. And now, it seems to be falling apart. So I consider charging the $250.00 that the other Facilitated Play Groups here in Ontario charge. But how on earth will that attract the parents of kids without Autism? The whole thing seems screwed up and no matter how hard we try, this will stigmatize Adam.

Adam got his passport photo taken the other day. He obeyed the photographer, taking a step on to the stool, standing still, facing him. He gleamed a smile. One of the store clerks insisted strongly that Adam close his mouth (it was hardly open).

"Close your mouth!" Adam wiggled, still smiling.

"Close your mouth! They won't accept the photo like that. Close your mouth!" The stout little man with no hair pursed his lips. His angular features punctuating his words, and effeminate voice beginning to feel like steel wool on my skin.

Finally, I blurted, "it's hard for him...he has Autism." My gut sank. For all of my wishes to not label Adam, I labled him anyway. I suppose I could have just said, "it's difficult for him," without any further explanation. Yet, it was his utter lack of empathy, or obeservation, or assumption, that I found repulsive. This is the dilemma -- to not identify Adam in times of need (I'm not saying this was a time of need, but there will be other times), will not allow him any special acommodation or support he may need. To identify him (his label), will lock him out of other opportunities that may benefit him.

"Close your mouth!" shouted a number of times at Adam felt totally foreign, and I realized how difficult it will be for him for a while. Or maybe me.

5 Comments:

Blogger Kristina Chew said...

Your title describes how most families with a child with autism feel often if not all the time--agency or no agency, it often seems that we have to make life-altering decisions for our children every day and can't take them back.

6:12 PM  
Blogger Christine said...

I admire you a great deal for your attitude, ability and gumption! Deciding to take the reins and run Adam's program yourself takes a great deal of courage, I'm sure.

Oliver is in a peer-model program at our local elementary school. Ironically, before we had the diagnosis, I called the school because I wanted him to be a model!! I wanted to do this for two reasons: 1) exposure to kids with differing levels of ability. We have downs syndrome and some other learning disabilities in our families and so I have always wanted my kids to grow up sensitive to these things; 2) it is free and that was ever so appealing. But I still would have paid something if it was the right program and it gave me the child-free time that I needed. So I don't know what the $250 would buy a parent but it doesn't sound like a tremendous hurdle depending on the situation.

8:37 PM  
Blogger Christine said...

Oh, a question for you re: the non-ABA, ABA. This is an interesting topic because I think there are many different approaches to ABA being offered out there and it is hard for a parent to determine what is valid without becoming an expert ourselves. I would be very curious to hear what you and the other bloggers think.

8:40 PM  
Blogger SquareGirl said...

Oh Estee, You are doing a beautiful job of meeting your child's needs. I think the looks like ABA, yet isn't is the best most individualized approach and applaud your amazing team.

Oh, and "close your mouth" is something that should never be told to a child who has autism...I never want Adam's mouth to close.

1:23 AM  
Blogger Estee Klar-Wolfond said...

I think the best program is one that is reaching each child. Rigid ABA that doesn't look at the child, but assumes the child must be taught "like the book" ignores the child. We can learn from books, but there is no better teacher than one who cares about the child and who creates and amends a program that helps this child learn.
This is what I mean when I talk about ABA. There are too many teachers that think they know everything, but close their eyes to what's around them.

10:25 AM  

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