Autism

Caleb is 4 1/2 years old now. He has a long list of physiological abnormalities and an equally long list of developmental delays that make up the "constellation of symptoms" that his doctors have been working with and pondering over as they try to determine what syndrome he has and what makes him who he is. Each year when we meet with Genetics they come up with new ideas of what it might be. So, blood is drawn and while we wait for the results I go home and read about each of the possibilities. When the results come back negative I am relieved. "Oh good! I didn't want him to have THAT!" As if there would be a syndrome I do want him to have. And as if I don't already know who Caleb is, with or without a name to put on his condition. Then last year, a new doctor, a developmental pediatrician who we were meeting with for the first time and who is young, suggested that Caleb was autistic. I didn't realize that day that he was giving a diagnosis. I took it as an idea to ponder. And I did ponder. What I decided was that this young, well-meaning, inexperienced doctor had mistaken the characteristics of ACC (Agenesis of the Corpus Callosum), which Caleb does have, for autism and misdiagnosed him. I felt that autism was being used as a catch-all so I dismissed it.

This year, we returned for a check up and Dr. N. spoke of Caleb's autism just like that, like it was him. Like it was real. I asked him about the mirrored ACC symptoms and about how you can be sure of something like this without a blood test. (I love the apparent clarity of a blood test.) And the answers the doctor gave made sense and addressed the concerns I had. Still, I am dense and this has taken awhile to sink in and for me to accept it. And after all the discussion when do we know it is real?

It's weird that I am having such a hard time with this. We have been looking for several years now for an identifiable diagnosis to pin to Caleb's symptoms. But I think there is a part of me that doesn't want a diagnosis. I just want Caleb to be Caleb.

So I am just starting to accept this, have only told a few people about it. I'm not keeping it a secret, it's just that there is no smooth segui in a conversation to say, "Oh, did you hear that Caleb is autistic?" And it seems strange to announce it on Facebook like an engagement or baby birth or something.

Also, inwardly I worry that once I tell people Caleb is autistic they will just hear the diagnosis, put him in a compartment in their mind for what they understand autism to be and not really get to know him. Perhaps that is why I don't accept his diagnosis easily. I know him and he does not fit into the autism compartment that I have formed in my mind by my media-led view of what this disorder is.

The diagnosis does open up opportunities though. We are working on getting him into some intensive therapy here in town at a facility that works just with kids ages 3-9 who have autism. Who knows what will come of it, but I am hopeful.

At times I feel overwhelmed because I feel that there must be so much that I need to do to help him reach his potential, and that there is a time limit in which to put forth that effort. If it's not done on time that he'll just be trapped and never become who he could have been. I am fine with who Caleb is now. I have always been fine with who he is. But I don't want to be the reason that he doesn't get more out of his life. This stresses me out.

I have been reminded several times in the past couple of months that although I may not know how to help him, and although I do not know what is going on in his mind, God does. And because God does He has put in place those things that Caleb needs. I see it with his siblings. Evander and Jayne are some of the best therapy that boy could ever receive. And he reciprocates. They need the training he gives them as well. When I look at it this way, it's not nearly as overwhelming and I can in fact be grateful for the whole situation