April 18, 2006 by Marj Hatzell
Oh no! There has been another Autism article in the paper, I know that everyone and their uncle will send me a copy of it, call me and tell me about it, etc. I happen to know (well, know of) the particlular family that participated in the article. I think these types of articles can help people demand better treatment for their children, but I also think they can be dangerous and give people false hope.
And then there is the guilt factor. Guilt that I am not draining my savings to pay for more intensive therapy. Guilt that I am sending him to a county program, when it seems like the people who are successful have sued the county to get individual services. I do agree that the more individual the services, the more progress can be made. But how do you work on social skills with a kid who doesn’t ever get to be around other kids? It is a catch-22, to be sure.
But the worse guilt I have is hearing about how many people do chelation and it helps their child immensely, and I want nothing to do with it. I hear too many horror stories. Might just be media sensationalism, but I am not taking the chance with my kid. Bugaboo is happy, loved and functions ok. He isn’t a lab rat, he isn’t here to be cured. Part of me wonders if I should just accept him the way he is and stop trying to find things to cure him. God made him the way he is, after all.
But then the little voice in my head says, “NO! He is worth more than that! He has more potential than that! Don’t let him slip away!” I can look into his eyes, and hear his little voice tell me not to give up on him. And I don’t want to.
The Autism World can be so political. There are many camps, many treatments, many people who claim that XYZ treatment will help/cure/alter your child. They make you feel so guilty, like a bad parent. Like up until this point you have done something wrong! Either you aren’t training him appropriately, or you aren’t feeding him right, or you haven’t done this behavior mod, or you haven’t taken him for $100 an hour therapy for intensive OT. Most of which can be done IN YOUR OWN HOME. And then I have to consider his diagnosis of severe ADHD (on top of the Autism) and wonder if by denying him medications to control his out-of-control brain, I am denying him the possibility of looking into my eyes, pointing to a picture or saying his ABCs.
The only thing that resonates with me so far is Floortime. It is a model developed by Dr. Stanley Greenspan and others. It works with a child in their natural environment, playing with their toys, with their parents. It is very intense, but you can go to trainings (which cost about $250, but the cheapest, by far!). And, it doesn’t involved doing anything special except turning off the TV or computer and spending quality time with your kid. Not that I don’t do that, but I think I can change the way I interact with him and get more affect out of him. And Bug Boy is doing so well with that kind of interaction. I don’t know if he is “growing out of PDD” or just improving on his skills, but he is set to go to a typical Kindergarten next year, with minimal support. That is progress! Do I think Bugaboo with be ready for that in two years? I don’t know, but I am not going to quit trying. He has already come so far!