Monday, July 01, 2013

Apraxia, Captain flavored.

Behold, I shew you a mystery.....

I have this child that I just don't get.  That's not a fair thing to say, because I can't claim to have a handle on any of my children.  But while Sir O usually exasperates me, and the Gentleman usually makes me laugh, I am purely bewildered by our Captain.


In the last 8 months or so the physical manifestations of his apraxia have become more distinct and pronounced. I had him tested for proprioception and balance and he's now being evaluated by an occupational therapist quarterly, because he's struggling with both.  He just can't seem to do any finessed motor planning, and everything he does turns out floppy.  On the one hand it must be very frustrating for him.


On the other hand, it's almost impossible as a parent to distinguish between when he's being floppy because he cannot help it and when he's being floppy because he can help it.  The two identical looking behaviors require a polar opposite response from me the mamma.  I screw this up a lot.

Another pre-church goose.  #afterglow


Luckily he's still got the sweetest, most guile-less personality underneath all the awkwardness.  The way he interprets the world around him is intensely sincere.  He gets attached to people easily and assumes they are equally attached to them.  He's often highly anticipatory of things that are bound to fizzle.  Like last week when he was SO excited to surprise his swimming teacher with his new rash guard.  He was sure she would find it as exciting as he did.  She did not.  But he rolled with it.  He doesn't get all bent out of shape over frustrated expectations the way his older brother does.



I'm still feeling my way in the dark with him.  I don't know how useful expectations are with children anyway, but I have had to hang a lot of assumptive expectations up out of sight for a while.  It's still to early to know what an adult Captain is going to look and function like, or what he'll be able to compensate for with years of practice.  As of now he can't hold a writing utensil well enough to write or draw with intent, and he can't sit in a chair for 5 minutes without falling off of it. He falls down a lot. He cries a lot.   He's smart, but not always able to do the things required to appear smart. I'm learning a lot.  Mostly I'm unlearning a lot.  I struggle to divorce myself from assumptions and judgements and expectations.  Many days I feel like Eustace Scrubb having his scales stripped off.  It's painful and vulnerable.  I know it's refining me, and I'm grateful for that.  I'm still in the middle of it, without the perspective of past tense, so I'm still feeling willing to give it all up and live without it if anyone offers me a silver-bullet fix.  It's funny, and kind of lonely.  But I know there are plenty of mothers going through this with me and before me and who will follow me.  None of us will anticipate finding ourselves here though, will we?

It's odd to deal with such an invisible disability.  It's so nuanced, this one.  It's not obvious to anyone but me his mother and the trained special-ed specialists what it is that he's struggling with.  To most everyone else he just seems a little clumsy, a little awkward, kind of slow, a little bit dumb.  He's not the least bit dumb, and given how much he has to focus to do any motor planning, he's remarkably coordinated.  The kid knows how to work hard, and has had to work much harder than most of his peers to do things that come naturally, even thoughtlessly to them.  But he's done it.  Somewhere down the line having learned how to work so hard has to come around with good karma.

In the meantime, well, I'm the mom.  I'm the cheerleader and coach.  Sometimes I'm all there is between him and the brutality of the world.  I'm pretty sure I signed up for this somewhere, and I'm pretty sure I didn't grasp what it was when I did.  But it's mine and I own it, even as I struggle to figure it out, every single day.

Guess who took over 500 photos with my phone today? #lotsofselfportraits #vscocam

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