Friday, January 31, 2014

A dose of expertise

C. working at her Tablet at home
It's been a C.-centered week.

On Tuesday, we had a round-table at C.'s school with an expert from a top American school for the blind and deaf. I will call her K. Several school staff members who work with C. attended too. This meeting eventuated only after my meddling, inquiring, pleading and insisting. The administrators were intent on keeping this visit off the parents' radar and we only learned about it serendipitously.

As we headed eagerly to the assigned room for our precious 35 minutes with K., the school's Stalinist-ish organizer of the event tried her darnedest to exclude C. from the encounter. Ms. Stalin, a.k.a. school guidance counselor, insisted that K. "already knew C. well enough". (In reality, K. had once met the entire class on a previous visit, and briefly.) She instructed us to leave C.behind in her classroom.

Normally I'm a first-rate wuss. But somehow - and hubby's presence no doubt helped - I insisted on C.'s inclusion in the meeting and I prevailed.

O. trying out our Tablet with C. She preferred
a Switch
C. performed for K. at the Tablet with both her thumb and hand. I also demonstrated our "alternate clapping" which I learned from K.'s partner when the pair last visited and have worked on tenaciously ever since.

The occupational therapist, O., who handles all the tech-related work at C.'s school, also proudly demonstrated what she and a volunteer have been doing during her half-hour-once-a-week sessions with C.

O. had recently told me that C. has been pushing the switch with her head which left me skeptical. You see, for about 2 years, at O.'s urging, I pursued that "head-on-switch" gambit and got nowhere.  The Tablet is clearly a superior tool. It is portable, accessible, elicits a better response from C. and utilizes her hand which, of course, is so much more "normal" than the head.

Well, at the demo C.'s head made absolutely no contact with the switch despite O's delusional insistence to the contrary. I was thrilled to hear K. recommend, as delicately as she could, that O.'s head-on-switch approach be replaced by tablet. Sweet victory!

Head-controlled switch and
clamp of the kind that O. likes
K. also advised us to download a greater variety of music and make the hearing of it alone C.'s reward for pushing on the Tablet. i.e. to stop giving her sips of water after each push because that confuses the message.

In addition, she recommended recording requests of her most common desires (a drink, food, etc.) so she can "communicate" them by touching the Tablet.

Among K.'s succinct, insightful and practical comments we heard her say: "C. is a smart girl". Honestly! And since we audio-recorded the entire session, those delicious, coveted words can be replayed for the dubious (and to re-inspire us believers). Never, in her nearly nineteen years on earth, has C. been described that way.

K. further amazed us when she explained that communication involves three stages: input, processing and output. She said that C. absorbs the input and processes it but primarily has trouble with output. That's two out of three!

But K.s visit also brought this disappointment: the realization that the entire staff at C.'s school is sub-standard. In the twelve years that C. has been attending, we have encountered only one, now retired, teacher - and no therapists - who come anywhere near K.'s league.

Today we drove out of town to provide blood for that genetic epilepsy study I mentioned last week. There we learned more details; it truly is the answer to all our genetic-testing dreams. The full run down in my next post.

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