Saturday, November 02, 2013

The Special Needs Rat Race

I'm tired of it.

Ever since they were diagnosed with Fragile X, seven and a half years ago now, (or at least, ever since I came to terms with the diagnosis), I feel like I've been racing toward something.  If we couldn't have a cure immediately, we were going to make sure we had the next best thing - whatever that was.

We tried all the proven therapies and some of the experimental and controversial.  We tried most of the medications, both FDA approved and common, and one still in trials.  Whatever people were telling me was the best and most effective, that's the direction I'd head. 

Our little babies weren't  getting any younger.  Brains just become harder and harder to mold as they age.  I couldn't see any point in spare time.  I tried to fill most of the boys waking hours with some kind of therapy, ever since they were eleven months old.  Now they are eight.  We've done occupational and speech therapy at school, Courage Center, and Fraser.  We had ABA therapy in our home for a little over three years.

Around two years ago, we had to take a break from our ABA therapy.  Not because we wanted to, but because the insurance company wanted us to.  Seems that if the data doesn't show a significant improvement resulting from therapy, the insurance company forces a "break" which makes you reevaluate the process and figure out whether it's the best course for this child.  As much as I understood why, I was not okay with it.  Not making progress should initiate stepping the therapy up - increasing hours or intensity or both.  Not backing off.

But the insurance company did decide.  Since they wanted Zack to take a break, AJ took one, too, while we looked into going back to have therapy at Courage Center, which ended up being a good move for us.  We did need a break from ABA.  Not just Zack.  All of us.  Hosting therapists in our house for eight hours a day was wearing on us.  It is easier not to have to bring the boys out somewhere for therapy, but the nonstop rotating door of therapists was hard too.  However I'm not going to say "if the insurance company hadn't made us take a break..." and give them any credit for it, because like Mark likes to say, if ifs and buts were candy and nuts, we'd all have a Merry Christmas.  I'm not sure what that means but I think it refers to the irrelevance of saying "if."

Anyway, we've spent the last seven years cramming in as much therapy and support and help as I could.  Forever, or until I saw a significant change in their capabilities.

And I'm burning out.  I'm tired.

After we wrapped up our ABA routine, I started thinking about trying out a new therapy center I'd heard was really good.  I filled out all the necessary paperwork to get us in to Fraser, and secured our place on the waiting list.  Six months later, in November of last year, we finally got the call - our boys had reached the top of the waiting list and could be evaluated.  The evaluations took the better part of a day, and then we shifted to a new waiting list to secure therapy appointments.  That wait took another four months (while we were waiting we had some therapy at Courage Center).  So, ten months after the whole process began, we finally started therapy at Fraser.  Unfortunately they couldn't get us in to the location closest to us, so we had to drive into Minneapolis for 5 and 6 PM appointments.  I had to entertain one boy in a crowded, loud waiting room for one hour and then the other.  The appointment timing couldn't have been more brutal.  It directly ran into rush hour and lasted into the start of our bedtime routine.  And I swear, every other week, it rained.  Or that could have just been the way it seemed.

So we are taking a break.

I'm careful not to say quitting -- we will be back to running the therapy circuit again before too long.  And of course, they are getting speech and occupational therapy at school right now, so it's not like there's nothing.

We are just going to pause long enough to catch our breaths.

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