Waiting to hear….

Filed Under (Adam) by Estee on 11-12-2009

I’ve decided to use this post for community feedback. We are at a new point in our autism journey that we have not yet figured out. Adam is in a state of pain that seems uncontrollable.

It began over a month ago, longer perhaps, when Adam began jaw clenching which moved into whole body spasms. Usually, when Adam is ill, or is getting a cold, he can’t stop moving his body and manifests his physical discomfort in body jerks and movement so much so, I feel his pain. If his ears hurt, or his mouth hurts, he has come to tell me so. But not this time.

So I’ve reached out to a few of my autistic friends to ask about myclonic seizures or other types of seizures that appear like body spasms and occur while a person is still conscious. It’s the kind of thing that I can’t tell is a bladder infection, growing pains, stress, or something more serious. Yesterday we began a whole new exploration and as I write this, Adam is uncomfortable upstairs and I can understand the moments when parents are beside themselves with worry.

Thanks for input but please make it kind and productive.


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About Me


I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.