April 16, 2010
I heard this quote while at the Defeat Autism Now! Conference in Baltimore, MD this past weekend. I can’t remember which speaker used it, but it comes from TACA – “They told us to start looking for an institution. We’re hoping for Harvard.”
I LOVE it! what a great quote for all of us biomedical moms and dads to hold on to. If you read my last post you know that I was pretty disappointed by Matthew’s trip to the Karate school. But I’ve had some time to “marinate” (an on-line friend’s word for ruminate) on the issues and Larry and I have talked and we are getting our game plan together. We are looking into other opportunities for him and trying to determine what we should be working on. One great thing that came from the DAN! conference was the idea to write down what we want to “fix” and then prioritize them. This is great when doing biomedical as well as when trying to determine what other interventions to use.
We are looking at HBOT again, to see if that will give us the boost we need, but we are also looking into therapeutic riding, yoga, classes from the local parks and rec which will provide an aide, and just plain old play groups. We have talked a little with our therapist to see what she thinks and I’m setting up a meeting with the PE teacher from his school to see what kind of things he needs to be able to do for next year.
And of course we have already started working on getting him to do jumping jacks. He can’t do it perfectly, but he is getting it. You can tell that it is hard for him and within seconds he is done and wants to move on to something, but I’m taking it as a good sign. God is listening to us and I think He is helping us help Matthew.
It is terribly frustrating, but we are making progress. I just remember seeing a slide at the conference that showed how normal kids are developing on what looked like a 45 degree angle relative to their age, and then showed how the gap grows between the normally developing child and the ASD child as they get older. What seems like a small difference at 5 may/will be a significant difference at 10, 15, 21. That is what scares and motivates me (and Larry). We know that we have to constantly battle that gap, we have to constantly try to minimize it so that as he ages he really isn’t that different from other kids. It is a consuming battle, but one, as his parents, that we are very willing to wage.
Maybe in 12 years we will be looking for an institution – I’m pulling for Johns Hopkins. I really like the way “Dr. Matthew” sounds!
