Wednesday, August 08, 2012

My Son's Life Is Worth Saving

Why do hospitals and people without disabilities so firmly believe that people with disabilities are somehow "less"? That they don't deserve to live their lives, just because those lives are sometimes different from their own? Why do I have to sit here in fear that Joey might one day be denied a life-saving medical intervention, simply because he is autistic? That is a mistake that you can only make once, and you can't take it back.

Please support Paul Corby and his family, friends, neighbors, and community, and send a crystal-clear message that denying medical intervention because of disability is wrong, intolerable, and... well, it is evil. Pure and simple. Sign the petition and take a stand against discrimination.

And this is not just random discrimination against a faceless other. This is direct, horrifying discrimination against my own son, my Joey. If this happens to the Corbys, it could happen to us- and happen that much more easily.
This is a life worth living, and a life worth saving. I have dedicated my own to both of these beautiful lives. Please help make t unthinkable to deny these lives a chance, because of discrimination and ignorance of autism.

Tuesday, August 07, 2012


Mountains are not mountains...
Mountains are mountains. 
                          -from Zen Master Dogen

I walked into the OT office to bad news this morning. The social skills groups my guys have been in for the last year are no longer considered "occupational therapy" by the insurance company- they have to go private pay only, because they are now considered "educational." But trying to get the school to pay for this "educational" but vital program is going to be... impossible. According to them, Joey gets plenty of service already- and certainly "appropriate." And we have learned how far "appropriate" and "adequate" are from what we consider the definition of either term.

We find ourselves in a war of semantics and a labyrinth of language. Part of the problem is how people view Joey and autism, and the goals different folks have for him. We always make sure to include our long-term goals for Joey in our IEP presentations: we want him to be happy, we would like him to independent, we want him to be able to live as an autistic person in what is a non-autistic world and be able to self-advocate. His therapists want him to be able to self-regulate, communicate, and move. His teachers want him to be able to read, to write, to be able to consider concepts and analyze information effectively. These may all seem like worthy goals- more or less- but they are all our goals for Joey. That is an important distinction. Keep that in mind for a moment.

Because Joey speaks and has made solid progress towards all of these goals, he has a number of labels added to him, in reference to autism. Mildly/Moderately autistic. High functioning. Low impact/mildly or moderately effected. With these labels come judgements, comments, ideas. And though some, such as "he is doing well!" seem benign, I sometimes wonder what kind of value judgement that entails. Does that mean a person who is "severely effected" or "severely autistic" is not "doing well"? And what is "well"? After all, we had an entire year of regression and missed goals, from which we have never recovered. When I see how children around Joey's age function, act, and respond, and see what Joey can and cannot do, how "well" is he really doing? Or am I drowning in another morass of labels, semantics, and language?

After all, Joey is Joey. He develops at his own pace, in his own time, and I'm just here to help as he needs it. And like my buddy Snail, he does things in his own Joey way. He's been Joey a long time now, he's gotten pretty good at it; but its nice for him to get help when he needs it.

So how much does help does he need? And doesn't that depend not on my goals for Joey, but Joey's goals for Joey? At what point do we transition from raising a child and helping them form a plan, to the plan they form for themselves? I worry when I see other fifth graders who seem to be able to self-advocate and have goals for themselves, and I'm still trying to play the super-sleuth in figuring out what Joey thinks, feels, and understands. I worry about getting caught up in words and goals and losing sight of Joey being Joey.

Because Joey is not the words, or the goals, or the thoughts we have about him. He is himself. And that is a very important distinction.