Thursday, June 6, 2013

Lots of stories to tell

Everything's OK.
Sometimes I feel like autism is everywhere I look.  I talk to parents, teachers, therapists, and doctors about autism.  It fills my Facebook feed, podcast feed, e-mail, and a good portion of my thoughts.  I am a little pleased that only about half of what I read is autism-related. 

All this information forms a network that exists in my head/computer/iphone/cloud.  It's my 2013 mental model of the world.  It's not very orderly, but rarely am I surprised when things get added to it.

Ben sometimes likes to drag a partially unwound roll of duct tape around our house and back yard.  Things get stuck to it, and after an hour of wandering, he's usually amassed quite a collection.

We encountered people with autism in their lives twice in the past 24 hours.  Out of the blue, Ben picked up two living, breathing people with his magic duct tape and stuck them right on top of my freaky cyborg mental model of the world.

Balloon Lady

Last night, we went to Bubba's end-of-school picnic.  It was quite a lot of fun.  We spent a good bit of time on the slides and swings.  It was great - Ben's motor skills are coming along and he at least tried to interact with the other kids.  He was listening to them and occasionally interjecting things, even if his voice was too quiet to be heard.  It was especially poignant to see him recognize a kindergarten teacher for a class we tried unsuccessfully to get him into.  He wanted to talk to her, but I don't think any of us knew what to say.

A little girl on the swing asked me to hold her balloon so she could swing more effectively.  We agreed that I would hold it while she got on and then she would hold it.  Ben wanted his own balloon animal and she was very helpful in describing where the balloon lady was.

We ran into Mommy on the way, and Ben stuck with her while I got in the long line.  A few minutes later, Ben showed up with a very nice balloon animal.  Lovely Wife had been hanging out with him at the front of the line where his excitement had been overflowing.  She whispered to me, "The balloon lady has an autistic kid.  She made one for Ben and said to come back when he popped it."  Which he did, of course.  I took him back to Balloon Lady and she graciously fixed the problem, no questions asked.  She was too busy to tell me her story, but I have her card.  We'll need a Balloon Lady one of these days.


The second random autism encounter happened today.  After school, Ben and I headed to the grocery store in the half hour that we have before picking up Bubba.  It was to be a lightning strike trip.  I had my list...we would be in and out and in line to pick up Bubba and some friends.  Then I saw the fire truck.  I couldn't resist...I parked next to it.  We got out and ambled over to look.  A firefighter said, "Would you like to see inside the truck?"  He started asking Ben some friendly questions which were met with little coherence.  I said quietly, "He's autistic" and the firefighter took a breath and said, "My two sons have autism - they're 17 and 22."  He looked me in the eye for only a moment, but his eyes held decades of experience.  "Come check out the truck!"  He opened the door and I popped Ben up on my shoulders to see.

We talked a little.  I told him about an idea I have to get autistic kids to meet firefighters, police, and maybe search and rescue people at a barbecue.  It might be worthwhile the next time a kid wanders.  He was just starting to tell me about his kids when Ben needed to leave.  I wanted to hear his story and his kids' stories, but time and tide and autism wait for no man (I added the autism part).

I was struck by twice meeting parents of autistic kids in so short a space.  Thanks, Ben.

Sometimes the steepest paths are the most rewarding.
I have a new role...I'm heading up the Utah Autism Coalition this year.  We're trying to make it so that autism is covered by health insurance in Utah.  As part of that, I feel it's my obligation to bring the stories of Utahns dealing with autism to the attention of their elected officials.  If you live in Utah, and autism has affected your life, feel free to tell me about your experience...anything you want to share, anonymously or not.  If you don't think autism should be covered by insurance, I'd especially like to hear your reasoning.  You can e-mail me at vorpaljon (at) or comment here or on Facebook.

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