Tuesday, January 31, 2006

After reading Elizabeth Moon's "The Speed of Dark"

*NOTE* If you haven't read this book and you don't like to have the story 'spoiled' by information about the ending, do not read further.


I found this novel unsettling and I've spent the better part of the past several days trying to pinpoint why.

I think Ms. Moon did an excellent job in portraying the inner life and thoughts/perceptions of an individual on the autism spectrum. There was a clear sense of respect for the lived experience of autism. The main character, Lou, is portrayed as a full human being who grows and changes over the course of the story. In fact, I strongly identified with many of Lou's experiences and personality traits. There were many times in the story arc where I found myself nodding or smiling, having felt similarly in past real life situations.

I saw Lou as a strong protagonist and cheered for him as his life became enriched by the challenges he surmounted. He was not portrayed as a victim, but as a powerful self-advocate.

And then Ms. Moon chooses to end the novel with the 'deux ex machina' of medical treatment for autism and in a scant few chapters, negates the value of all of Lou's hard earned victories. He, in fact, becomes 'other' than Lou, and loses interest in all the people and things that once were the cornerstones of his life. In fact, one of the reasons Lou persues this treatment is to have a chance at what he sees as a normal relationship with a neuro-typical woman. When he sees her for the first time after his treatment, he says he feels nothing for her.

I found this terribly ironic and incredibly distressing.

As I was reading the book, I also wondered if a neuro-typical reader would find this distressing, but in other ways. Would that reader find the first 3/4ths of the book--in which we primarily see the world through Lou's first person perspective--distressing? Could they accept Lou's logic, his perseverations, his non-linear thinking? Or would they slog though that, then sigh with relief at the ending where Lou becomes a neruo-typical narrator?

I welcome your thoughts.

Friday, January 13, 2006

Sometimes it *is* that simple. . .

My son is happy. I see it in his smile when he comes home from school, in his quick 'debrief' with me, his endless teasing, his spontaneous hugs. At 12, he is still happy to give his mom a bear hug.

He's in 7th grade in a large middle school. He's an aspie. By all rights, happiness is not part of that mix. But he is happy.

So what have we changed that could create such a dramatic difference from just a month ago? Have we started him on some new powerful medication? No. Has the school suddenly expelled all the bullies? No. What has changed is so small, so easy, that I hesitate to attribute anything to it.

Lunchtime.

For the past year and a half, middle school lunch has been like decending into the ninth circle of hell for my son. He's had money extorted from him, he's had his food stolen, he's been kicked out of his seat, he's had his lunch dumped to the floor, he's been told, repeatedly, that he's stupid, a jerk, not liked, not wanted.

I've been talking about lunch and PE to his school team since the start of middle school. Finally, at this years' team meeting, the team came up with an alternate lunch option that was nothing short of transformative for my son. The 7th grade social studies teacher has an open invitation for certain kids to have lunch in his room. It's not a 'SPED' thing, just a group of interested kids and a teacher they respect. It's not always the same mix of kids, though my son has lunch there every day. And it's been incredible.

He feels as if he has a place where he belongs--where the kids accept and enjoy him. A safe, predictable place.

Total cost to the school district: $0.00. Value to my son: Priceless.

As for PE--that's another fight for another day.