Tuesday, May 31, 2016

In the dark and groping

Here we are, C. and I (my hand, that is) both struggling. She, to move her fingers on the board and elicit sounds. I to prod her to do that. At times we both succeed. Ever so slightly.

In the world of profound disability, the minutest desired movement is welcome. But sometimes even that eludes us, as you see here.

In this domain, I'm really just groping in the dark.  I rely on whatever meager Occupational Therapy skills I've gleaned from professionals over the past twenty years. It can be an exercise in frustration and futility.

The OT's at C.'s school are in the same predicament. They may very well succeed with the less severely impaired children. But when confronted with C. and those like her, they are rather clueless. In the fifteen years she's attended that school, they've achieved nothing with her.

I know that there are OT's out there whose expertise lies in working with profound disabilities. The Hubby and I once hired a pair of them for an hour at great expense. C.'s school lacks the funds to employ them and we couldn't afford to bring them back to our home.

But our government clearly can. If it re-channeled just a fraction of the multi-million dollar budget it lavishes annually on large, closed institutions, to children with disabilities who live at home, this problem would vanish.

And C. might actually press the buttons on her toy board. It's that simple.


Elizabeth said...

It's so good to see your C and hear your voice. I am wondering if you've ever used an iPad with her?

The Sound of the Silent said...

Great to hear from you, Elizabeth.. I hope all is well at your end. (I was a bit concerned after a certain line in your post "Threads Bits and Pieces of Gratitude and Exercise".)

We tried an iPad but gave up because of the screen's smooth surface. C. seems to need buttons, raised spots, surfaces that will stimulate her but require the gentlest of pushes.

The trouble is that the sounds and music these boards produce are positively insufferable. I can't seem to find one that's got pleasant music/sounds. If you ever stumble across such a creation please send me the link.