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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, May 06, 2007

 

Life is not a Preparation

This Tuesday, I'm speaking at MIT. I'm talking about all the fear and fascination we see and hear about autism and what respect means. I'm talking about a fair way of talking about autism. I'm so heartened to hear others who talk the same way. It strikes me that our autistic children are put under unfair and impossible microscopes -- every behaviour scrutinzed, pondered, with therapists often wanting to change it. Is this really fair? Do we put other five year olds who tantrum and are being stubborn, or who do not want to do something under the same microscopes? Have we set the bar a lot higher for children with special needs?

This focus on changing behaviour that isn't harming anyone strikes me as a waste of time when Adam needs to focus on learning and living, but not always preparing for the future. That really does happen naturally. We have decided that it's also important to spend time enjoying life and being together. I think today I'll take him out for lunch, walk the dog, and we'll do what we want -- it's Sunday. I don't book anything on Sundays so we can discover what's out there, discover ourselves, and who knows what else. What we want is some quality in our lives, and we are happier when we don't have to worry every single day of what may be or what may become of Adam. Life is about living. Yes, it's also about working. But we want to live today, not worry about tomorrow. Here's a great post by Aspie Home Education. In order to learn and to discover ourselves, autistic or not, we need some time and space to experience.

8 Comments:

Blogger Tibetan Star said...

Just wanted to say "hello"
and good luck with your talk!

10:12 AM  
Blogger mcewen said...

My pal [who knows all the psychobabble speak] is convinced that we are raising a 'set' of children who surpass the 'mainstream' in any number of different fields, not the least of which will be an enhanced sense of humanity.
Best wishes

10:17 AM  
Blogger kristina said...

Hope it goes very well and look forward to your recounting of what was discussed. Just finishing a fine Sunday in NYC with Charlie as you describe with Adam.

7:51 PM  
Blogger Nicky Palmer said...

It was very enjoyable reading your blog and sensing the peacefulness you have with yourself and your child. I think it is very freeing to accept, love and embrace a person. Identifying the positive feelings and allowing the future to unfold is a gift. Resisting the urge to do interventions to the person(a response to our own crisis) is important when considering how the person with autism feels about those interventions.
Nicky Palmer Family Therapist
www.asdhelp.com

8:46 PM  
Blogger bigwhitehat said...

How did Tuesday go?

2:18 PM  
Blogger Fridlund Family said...

I have often thought about this. Are we setting the bar for our own nearly-5-year-old son higher than if we had a NT child? When we first recognized that he was autistic we read all of the books and changed our basic daily structure. This 'tightening' of our schedule and life worked great... at first. We also have had to learn how to flex. We are letting go of some specific behaviors and are beginning to prescribe to a similar point of view. He is a child and needs to grow for life's experiences. We can't shape who he is or all of his experiences.

The first desire is to protect our child- as if he was not capable. He is capable- his mode is just different and we need to find his strenghts and build upon them.

Thanks for your excellent ability to share this point of view. As a parent struggling with the same issue, it was refreshing!

Eva

11:33 PM  
Blogger Estee Klar-Wolfond said...

Hi Big White Hat:
The presentation went well. MIT will be putting it on You Tube and I'll let you all know when it is up.

4:31 PM  
Anonymous Anonymous said...

Nicely put! I do not always find myself in agreement with many of your stances. In this instance I do. I think there is too much fixation on behaviors. I believe in the gfcf diet, but I disagree when every time the child does something out of the ordinary, it must be related to food. It is one of my pet peeves. Autistic children are like any other children, some days are good and some are not. All of us have less than perfect behaviors, mannerisms and habits. Having a child with autism has been the ultimate in teaching me to live by the great cliche: "Don't sweat the small stuff".

8:40 PM  

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