Monday, October 10, 2011

A million little pieces

No, not the semi-autobiographical novel by James Frey, but the million little pieces, things about Hannah that B and I know inside and out because she is our girl, and she's been in our world for six years, and it's second nature to us to see when she's slouching and sneak behind her and scootch her tush back, or put some peanuts next to her while she's coloring if it's been awhile since she last ate, or encourage her to "get a good base of support" when she's washing her hands at the bathroom sink.

How do you teach someone about all of those things so they can take over this role for you for 7 hours a day, 5 days a week?  How do you let go of the control you've had over managing this and trust that the new adults in Hannah's life will catch on quickly, or the learning curve won't be so steep that Hannah will be hurt physically, emotionally, socially or academically until everyone gets it?  How do you try to calmly advocate for her when really you want to charge in like a mama bear, claws out, ready to swipe at anyone who suggests what they are offering is enough, when really it is a pittance of services to begin with, and what you're asking for is an increase to a somewhat acceptable but still not ideal amount?

This is the dance I've been doing since we sent the girls off to kindergarten.  It's a big leap of faith for all parents, to give up the last vestiges of control over the bulk of your kid's day.  Even in the best of situations, kids don't always get what they need at school and some degree of muddling through and figuring out is commonplace.  And learning how to support a bright, motivated, "very aware of her disability and wanting to be like everyone else" kid when her body does not always allow her to participate like everyone else or be as independent as everyone else is a tall order.

Thankfully the teaching staff-Hannah's teacher, teaching assistant and individual assistant are all compassionate and want to do right by Hannah and by us.  Also gratefully, we have an amazing special ed case worker who is on our side too.  But it's a work in progress and while we're honing in on the first few hundred little pieces, there are still a pile more that need to be sorted through.

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