Sunday, April 7, 2013

Mom, do I have autism?

My son Dominic has autism, specifically PDD-NOS. He was diagnosed around when he turned 4 and has been receiving special services since, mostly with social skills, but also OT to help his sensory needs (he also processes sensory stimulation inadequately and needs more sensory stimulation every day--which explains a lot, LOL!) I don't post a lot about his autism because it is only a part of who he is, and I want to record his whole life, not one part. Still, since April is Autism Awareness month, I make a page and share some of what his autism diagnosis means he is working on and going through right now.

I made this page recently about something I knew I would have to talk with him about eventually: the fact that he has autism. I'll post the journaling in case you can't read it above:
Because Dominic has autism, people sometimes ask me if I watch Parenthood. I tell them no, I watch TV to escape, not to repeat the stress in my life. The last episode I remember seeing Max wanted to participate in a fundraiser for kids with autism. His parents wrestled with what to say to him. This made me wonder what I would say to Dominic someday about his autism.

I recently encountered that situation. When I drive the boys to school, we listen to NPR, one day to a news story about autism. Dominic listened and asked, “Mom, do I have autism?” This was the moment I’d wondered about for a while. I told him yes, he had autism. He asked me what that meant, so I said that people with autism had brains that were different from people who didn’t have autism. People with autism, I said, have a harder time learning to communicate with others. Dominic reacted pretty casually, telling me that he did have trouble talking with people. Sometimes when people were talking, he would say something that didn’t fit with what they said.

I remember reading a book by a man with autism who said he had started to understand that he was different from others when he was around 9 years old. This year Dominic appears to be starting to come to that realization himself.
This conversation happened last fall, which means some time has passed. I couldn't remember Dominic's exact final words in our conversation, just that he had a sense that he had trouble talking with people but that it was OK. He didn't dwell. I suppose I dwell more on his diagnosis than he does. My job as his parent is to not shower him with my worries but instead to share my hopes for him and my belief in him.

I tried to write a lot in a small amount of space, so I worry that it is a bit compromised story-wise. The name of the book was Look Me in the Eye by John Elder Robison. I read several books about autism, and I found this one to be valuable because it shows someone who is a successful, functioning adult, something I think gives a fuller picture of autism (Not everyone with autism is Rainman, e.g.). The book also shows his journey towards self-awareness, which included pitfalls and quirks that tend to circulate around people with autism. I recommend the book if you haven't read it.

If you are interested in scrapbooking, here are some details from the page:

Thank you for letting me share my family's story with autism. I cannot emphasize enough what a privilege it is to be Dominic's mother.


alisonm said...

I can't even begin to comment as i am still dealing with this issue, I hope your journey is smoother than mine has been... love to Dominc.

Andrea said...

The page is beautiful and I am glad that you captured the story.

Keshet said...

This is beautiful, Jenny.

Diana Waite said...

this is TOTALLY lovely!

csewy-csescrap13 said...

A beautiful layout.....Dominic is very lucky to have you as his mother!

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alexandra s.m. said...

Wow! The first thing that comes through my mind after reading your post jenny is Dominic is such a lucky boy to have you as his Mama. The second thing is how beautiful your page and words are, how simple you make it look and how very graceful you always are.

Thank You~