Every week I have a "parent meeting" with our ABA lead therapists where they report all the progress. These meetings are very positive and uplifting. They always give glowing reports.
Every few months or so, the head honcho, the lead therapist, Nancy, comes out to check on the boys' progress and to meet with me. Nancy almost always makes me cry.
She's very direct, is the thing. She does not sugarcoat. She uses phrases like "mental retardation" in the clinical sense of course. And while my brain knows that, my heart is ripped out every time she says it.
So today we discussed what direction to take the therapy. They have basically two roads we could go down at this point; one road continues to work the boys hard to get to a point where they are on par with kids their own age. When they "graduate", they are equal to their peers. They usually don't need help in school.
The other road is more of a "life skills" one. It is the one taken when you have reached a point where you can assume the child is not ever going be able to "graduate." Today Nancy said, giving me a little resigned smile, that we should probably start aiming toward road number two.
She didn't tell me anything I don't know. The kinds of things we need to work on are essentially life skills; drinking from a sippy cup, using utensils, and of course the dreaded potty training. I just am not ready to reduce my expectations of the boys, to say that they'll never be on par with their peers.
One of the sessions I went to at the conference bothered me a lot and I haven't commented on it. It was the one about what to expect as your Fragile X child becomes an adult, and all of the adult examples they gave were doing jobs like bagging groceries. And I don't want to offend anyone who reads this whose child works at a grocery store bagging groceries at all, but I'm not ready to make that the expectation. I'm not ready to put them on the grocery bagger track. And I don't think I should be, when they are only 5 years old. I know better than to assume the medications currently in trials are going to make the boys "normal."
Oh I don't know what I hope for anymore. I'm going for a walk.
Fragile X – 6th Form and Bus Passes
1 week ago