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State of the Boy, First Edition of 2009

January 26, 2009

I haven’t written much about the Boy, because in a macro sense at least, things are business as usual.  He’s still in his pre-school in the morning and entertaining his motley crew of home service providers in the afternoon.  He’s making progress, in some areas more than others, but it certainly tells us we are going in the right direction.

Except, we still don’t have a real diagnosis.  Sure, hypotonia is a diagnosis in itself, but what causes it?  We’re getting ready to begin the transition from Early Intervention, which covers birth through age 3, into CPSE which takes on ages 3-5.  It’s been hinted that it’s easier to get services approved in CPSE with a “real” diagnosis, which makes sense.  You come into to process knowing that you have a spectrum kid, and then there are some very obvious and some not so obvious therapies that are needed.  With what ails the boy, without a diagnosis, it might not be so easy.  He’s not CP, he’s not on the spectrum, he doesn’t have a syndrome – he’s him.  And it’s up to us to advocate for that.

At our last collaboration meeting, Mr. IT restated how he wished there were an MD to tell us we’re doing the right thing, and could give us a name for what’s affecting Boy.  I’m not sure it was in response to that, but one of his therapists chimed in and said, “Sure, it’s great to get a diagnosis.  You have something to Google, you can find an online support group, and you have something to talk about at cocktail parties.  But it doesn’ t always work that way.”  That cracked me up because in my experience, it’s oh so true.

So we go on.  We are seeing a neurologist (our third) who was recommended by a pediatrician friend of mine, and we’re considering seeing a developmental pediatrician who can, according to some, aid us in getting the right services.  And we go on…he gets his services, and hopefully he will continue to improve.  I do know that he’s thriving in OT – the activity is just what his “out of sync” self needs.  PT is a struggle, because it’s work. Sometimes he cries, sometimes he fights it, but he gets through it.  I have to admit, every time I watch him struggle through a PT session, I have even more admiration for him and what’s he’s accomplishing, even if he doesn’t realize it himself. 

Maybe we’ll never have a diagnosis.  Maybe that’s ok.  We treat what we have, and he makes progress.  Like him, we take it one session at a time, one day at a time, and we’ll see where we end up.

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