Here I Am

I wanted to say a few words about the Autism and Advocacy conference that Charlie’s father—my husband—Jim Fisher is organizing for the 27th of October in New York City.

The question comes up again and again on email discussion lists, blogs, phone conversations among parents of autistic children:

How do you know what therapies to use?

And there is, I think, no good or true or right answer for one parent to give to another parent. It is a truism but it is, nonetheless, true that “all autistic children are different” and that “if you’ve met one autistic child, you’ve met one autistic child.” Different children have different skills and different levels of skills that vary as much as (to invoke the metaphor of the autism spectrum) the colors reflected off a prism in the sunlight. The ABA that has helped Charlie learn so much and like learning so much may seem like the last thing another child needs, as may the gluten-free casein-free diet he has been on since he was two years old, and the medications, and the Culturelle capsules.

We parents of autistic children are on a spectrum ourselves in regard to the treatments and therapies, the educational programs, we deem best suited to our children. And so, I would say that my central criterion for determining “what Charlie needs” is based on the notion of trying very, very hard to discern—to see—just where Charlie is, just who is this boy we live with and care for so much, just what is he doing right now before our eyes.

In other words, we try our best to see who is the person before us, in front of us, with us. Not, who was the “normal” and “perfect” child before he descended into some awful nightmare autism existence as a result of XY or Z? Not, who do we fear this big, strong, tantrumming nine-year-old will become when he is 29 years old?

Though he has never said it, “here I am” is what Charlie is saying to us, wordlessly, each and every day, with every look flashed to us from his big brown eyes, with his delighted smile to be swimming in the ocean. It is remarkably hard for a parent to hear that “here I am,” and not only because (in Charlie’s case) words are not his best means of communication. Too often, we parents get stuck in some magical thinking and think, wish, that we can change our child into the child we believe we ought to have, and not the child who stands before us.

And to see our autistic children—autistic persons—as they are and not through the lense of what we (magically) wish they could be and were instead, is the underlying theme of the Autism and Advocacy conference that Jim is organizing for the 27th of October in New York City. That is why the the conference is described as a “conference of witness and hope“: Every day, we try simply to be witnesses, to be there for Charlie, and we hope always that we can do our best by him.

I know that many of the cyber-autism-community are not able to travel to actually be at the conference, but I hope that as many of you might be there. The conference is free and open to the public. If you cannot attend, please spread the word about the conference—you can download a PDF file with an invitation here—to any and all you think might be interested. I myself have been more than grateful for the internet, for email and blogs, to connect with others about the subject closest to my heart—-my autistic son, Charlie—-and it would be a tremendous thing to match names to actual faces, and to shake actual hands, for one day in October.

So that we can say, for one day, Here We Are.