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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

Wednesday, July 25, 2007


We Go On Living

As you read in my last post, we've been really ill around here -- just emerging this week from virus' and Adam's swimmer's ear, the latter which brought about pain and a high fever.

Other than that, I feel a little removed from autism these days. Camp is so wonderful -- a "regular" camp where Adam attends with a shadow -- something I believe all families should be entitled to have and am considering raising funds for. We are all relaxed and Adam is talking a whole lot more. I look forward to his school this September, where he was so happy -- the atmosphere so quiet and suitable to him. It feels so strangely in place these days and I said to Henry last night:

"There was a day when Adam was first diagnosed that I worried all the time -- when I worried about his not talking and such. When he was first diagnosed, it was hard for the first year not to think about what he would be like without autism, for that's what the world would have you believe is possible. Today, I don't care. I don't think twice about it, except when I make a point of it on my blog. I accept Adam for who he is and I like who he is as an autistic person. He is the best boy in the world and I wouldn't change a thing."

Yes, our kids get ill. Yes, Adam can be anxious. Yes, we have to modify some things. But it's the world as we know it and we have gotten to the point where we don't think about it as much any more.

I am booking Adam's fall music and sports programs now, and we are welcome with open arms. I like to commend all the people we meet who have accepted us and who are so flexible in order to let Adam be part of the life to which he is entitled.

So I guess it's why I'm not responding so much to all the Google Alerts I get on autism. All the new news about the cause of autism du jour. It's like we've finally gotten to the point where we float about all that hoopla and nonsense and go on with living.

Maybe it's just summer.


Blogger mcewen said...

I'd put it down to summer myself! Maybe we're just living in a fluffy cloud, or pretending. I like my fluffy cloud, but every so often some kill joy comes along with some unwelcome reminder.
More fluff to you dearie!

10:39 AM  
Anonymous Anonymous said...

Amen to that.

I wish I could enroll my Pete in a camp with a shadow. That is truly something worthy of fundraising. It warms my heart to hear how accepted Adam is and that there are programs for him in which he can excel.

Hope you're all feeling 100% soon.

Karen in CA

12:11 PM  
Blogger mumkeepingsane said...

There was a moment in time when I truly started believing that Patrick was entitled to be a part of his community just like every other child. From that moment on autism became secondary in our every day lives. And we are very lucky that our community has embraced him (us) with open arms.

Waiting for the day when Patrick can attend a regular camp with a shadow...

1:57 PM  
Anonymous farmwifetwo said...

We sent our eldest last year to daycamp with a shadow. Overnight camp without. Speech camp the little one went with a shadow.

Respite covers the camps, mileage and shadows (SSAH - special services at home - Ontario - not income dependant) worth the intrusion into our lives...

Now if only I could afford to send him to private school with a shadow.

3:38 PM  
Blogger bigwhitehat said...

You mention raising funds for shadows. Fantastic.

I have been considering starting a charitable foundation to help with Tiger's expenses. I have hopes that it will get bigger than that as well. I just have to get educated about how to make it work.

10:13 PM  
Anonymous Anonymous said...

Karen, you might want to check out Western Association of Independent Camps. ( I'm not sure where in CA you live, but I found several camps in the LA area that gladly accepted children who needed extra support. There was one in Agoura that went as far as getting the child's team together beforehand to ensure the child's camp experience is as positive as possible. Regional Ctr covers the cost of camp, and while I chose to use my son's shadow that he has during the school year, I believe RC covers the cost of a shadow as well.

11:21 PM  
Anonymous Anonymous said...

Thank you, annonymous!

karen in CA

9:44 PM  
Blogger LAA and Family said...

So glad to hear of the good summer (except for illness!) you all are having. My family has taken a step in the opposite direction this summer. We're trying to do most things from home. I'm doing my best NOT to get the kids in camps. I did make an exception, however, for my oldest boy(who is not autistic). He'll be going to a music/art/sports camp in a few weeks. We also did an alternative to summer school for Samuel, skills maintenance is being handled at home this summer. Change, lots of kids to deal with, and my need to just completely reorganize the activitiy our family's life to fit our philosophy are the main reasons. I'm hoping to get back to more community activities in the next year, once we adjust to the new in-home help we have received (and are currently training).

7:12 AM  
Blogger CrankyOtter said...

Friend of FW2 here.

I have problems with my ears getting very itchy after they get wet. I've managed to keep it at bay for years with this simple fix, and doctors always compliment me on my clean ears. Put a little face toner in a spray bottle, spray 1-2 squirts into each ear after a bath, swimming, or shower, then clean out with a Q-tip. Yes, with a Q-tip. The toner has alcohol to help dissolve the grunge and moisturizers so it doesn't leave the skin dried out.

I put "Sea Breeze" in an old $1 sample size Aussie scrunch spray bottle (now 17 years old and still going strong). I still use it almost every day. But my ears don't itch and I don't get swimmers ear. It may or may not work for you (depending on tolerance of Q-tips) but I thought I'd give you the idea.

11:46 PM  

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