Groping in the dark

Here we are, Chaya 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 movement is welcome. But sometimes even that eludes us, as you see here.

Chaya and her sounds board - May 2016 via Vimeo.

I'm really just groping in the dark, applying 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 OTs at Chaya's school are in the same predicament. They may very well succeed with the less severely impaired children. But when confronted with Chaya and those like her, they seem to be 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. My husband and I once hired such a team for an hour at great expense. Chaya'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 Aleh, to children with disabilities who live at home, this problem would vanish. And Chaya might actually press the buttons on her toy board.

It's that simple.