Monday, July 08, 2013

Finding our way

In just a few days I will pack up the car with probably far more than we will need, point the front bumper North, and hit the road. Oliver and I will be attending the 2013 Summer Institute on Communication and Inclusion at Syracuse University. This conference has loomed large in my mind since I first considered attending. Could we attend? How would that work? How would Oliver respond to being in such an environment? Would he be overwhelmed? Would I be overwhelmed helping him navigate? What would he get out of it? What would I get out of it? As I wondered about these things I started trying to find out as much as I could about Facilitated Communication (FC), because, I discovered, that's how the world understands Oliver's ability to write. He still needs support to get his words down on paper. Without another person's touch he cannot locate his hand properly in space and the effort of writing becomes an exercise in frustration.

When I first heard about FC, at about the time it was getting lots of negative press, I dismissed it almost immediately. I wasn't interested in anything that was controversial. There were far too many other topics to get smart about and I wasn't going to waste my time on some kooky "therapy" that promised things that seemed too good to be true. I never thought about it again. Not, that is, until a little more than a year ago when I discovered that Oliver could both read and write. And let me be clear about this: Oliver is no ouiji board, as one commenter here once suggested. He writes, with the assistance of three different people, in his own idiosyncratic way. He is on his way to being independent, but basically I don't really know how to be helpful in any kind of systematic way. So I'm looking for help.

Lucky for me, I discovered that there are many amazing individuals out there who have succeeded in making their voice heard through FC.  Together, Oliver and I watched an amazing documentary, Wretches and Jabberers, about two autistic men who travel internationally connecting with other non-verbal autistics who communicate through writing. Oliver sat, uncharacteristically rapt, through the entire documentary. The next day we watched it again. Surprised that Oliver was paying such close attention, I asked him about it and he replied that he didn't know that there were others like him in the world.  That's when I knew that there was something important that needed to be done for Oliver. I needed to find a way to connect Oliver with other people like himself. And I needed to start educating myself about how to teach Oliver about self-advocacy. Because I don't know how much support Oliver will need in his future but I want him to have both the self-awareness and the confidence to ask for it when he needs it.

So Oliver and I are both registered participants for the Summer Institute. The schedule of events features an impressive lineup of speakers and workshops. My goal is to come away with strategies for helping Oliver to become more independent in his communication and for making it more integrated in our lives.

When I asked Oliver what he was looking forward to he said: "I might be able to meet other men with autism like me."

I am giddy with excitement!

video
Mile 25: Something tells me our little biker dude has the makings of a strong self-advocate!





4 comments:

  1. I'm excited for both of you to attend. What a wonderful opportunity for both of you! I hope you will get a chance to write about your experiences.

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  2. I hope you both will find some kindred spirits!

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  3. I hope it rocked for you guys! Love, Ib

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  4. Christine - I am so happy to read about how you came to all of this. Very exciting!

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