Monday, November 24, 2008
Friday we took Joe to see a genetic neurologist at Riley. He seemed very knowledgeable and understanding. But basically Joe doesn't match up to any syndrome or disorder just right. So he wants to run a few more blood tests to rule some things out (including Angelman's Syndrome and FragileX Syndrome), but he doesn't really think any of them will come back positive. He did suggest the possibility of Autism, but there's no test for that. So, we got a whole lot of nothin'. We keep finding out what Joe doesn't have... but we still have no idea what is actually causing him to have such severe developmental delays.
I found an online article that was helpful and encouraging to me. It included the quote:
"Acceptance is not submission; it is acknowledgment of the facts of a situation. Then deciding what you're going to do about it." Kathleen Casey Theisen
I've been struggling with that very concept. I've been wondering how long we're going to continue to do test after test that may or may not find anything... is it giving up if we just stop looking for answers? Is it really going to change anything if we find out what is the reason behind the problem? We're already taking steps to help Joe through therapy, etc. That probably wouldn't change if we had a name to put on his "condition" or whatever. I'm getting to the point where I am accepting that we're not going to find a cure for Joe. The best we can do is help him to maximize his growth and development despite his limitations.
On a more positive note: We were pretty excited this week when he sat unassisted in the bathtub for the first time. Here is a video of that!