Monday, November 05, 2012

Giving Myself a Pep Talk

Excuse me while I have a little chat with myself. I've been stressing over something I shouldn't be.

What happened is, I finally got the call from Frasier autism treatment center that Zack and AJ have reached the top of the waiting list.  The list they've been on since last June. We have our first evaluations there in a couple of weeks. This is kind of a big deal - kind of our first big venture into a therapy regimen since quitting ABA therapy about a year ago. It's very exciting.

And I've been a little afraid to be excited for it.

This will be about the 4th kind of therapy we've tried.

My mind rolled itself up into a ball and went right off a cliff after I got the call from Frasier. Like every other new therapy and medication and doctor we've tried, I was so immediately so excited. We waited for months for this. I'd filled out yet again stacks of forms. Twice.

Exactly like I did before we started the STX209 drug trial. And before we started speech and occupational therapy at Courage Center. And before we started the intense ABA program.

When we were thinking and talking about trying ABA, the head honcho, Nancy, was full of statistics that promised amazing results from ABA. She said a huge percentage (I don't remember exactly what the number was) of the kids treated with their ABA therapy were able to attend kindergarten without any aides or help and with few, if any autism symptoms.

I knew that wouldn't be us. Fragile X is genetic. It can't be "therapized" away. It can be improved upon, assisted, but it's always going to be there. I told Nancy this. We talked a lot, several times, going round and round about it. In the end she convinced me that ABA would be beneficial.

And it was - I admit it! They really have better control over themselves. They express themselves better. They follow rules. ABA definitely helped the boys. But like a lot of things we've tried, it ended without some major goals being realized.

I have to focus on remembering all the good things they got from it. I knew it wasn't a cure.

It was the same thing with the drug trial. I tried to keep my hopes in check and realistic, and while the drug has been helpful and definitely has benefits - it wasn't as mind-blowing as I had hoped.

Admittedly my expectations were way out of whack. The day we gave them the very first pill, we braced ourselves and stared at the boys, knowing it was insane but half daring to hope that that day would be the day that changed everything. The proverbial "first day of the rest of their lives."

Okay, so let's try to be completely honest here. Would I do ABA again, knowing what I know now? I think so. Maybe. I do know it was good for them at the time.

Would I do the clinical drug trial again? Absolutely. No question.

So I give myself permission to be excited and anxiously anticipating the therapy at Frasier. It will be a good thing.

It feels sometimes like I've been chasing something - a perfect treatment, a cure, whatever - ever since we got the Fragile X diagnosis. We've tried so many different medications and therapy routines and styles, and it's easy to look at all we've done through the past 6 years and think - "all that work, and they still have Fragile X." Yes, they do. It's in their DNA. They always will have Fragile X.

But hopefully they can live with less anxiety, better sensory perception, and fewer upsets. I guess that's why we do all that we do.  Why we keep trying different things.




The only Halloween photo I got where everyone is facing the same direction.


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