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.

In the dark and groping from Mary Silenti on Vimeo.

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.