Wednesday, May 22, 2013

Waiting, Chapter II

Scene from the video, 'Calendar Conversations', mentioned below
My roamings around the web just landed me at the blog of another mother of a disabled child: It is one of Babble's (= Disney) 100 Top Mom Blogs for 2012. Needless to say, it suffers from that ubiquitous deficiency of disability writings:  the profoundly affected aren't featured.

Nevertheless, this mother is at once witty, entertaining,  informative and when warranted, scathingly critical and definitely worth following.

On Monday, the hubby and I were treated to another, long awaited lecture from the expert duo that first visited C.'s school two months ago. (I blogged about it under the title "Waiting". Now you understand the meaning of this post's title.) Once again they were edifying, insightful and inspirational. Once again the lecture was accompanied by demo videos. And, sadly, once again, the rest of the audience - the school's team of therapists - were resistant, belly-aching that the new ideas weren't realistic for our school's low staff/student ratio.

Finally, once again, I kid you not, they chatted and texted during the presentation.

Unlike the earlier lectures, these were open to parents so we weren't "crashers" this time. Invitations had been sent home to parents in our children's school bags weeks in advance. Notwithstanding, a grand total of 3 parents (including the two of us) attended. There are over 80 children in the school, plus about thirty more adults in the dormitory. (The paltry showing speaks volumes about this State's attitude towards parents of the disabled. But that's another blog entry)

Here are two low-tech but appealing ideas that the visiting duo suggested:
  1. Most of the lecture was devoted to this: the Calendar System. A means of preparing a child for upcoming activities via any symbols that "speak" to him. Individualized is the key word here. Probably no two calendars will be alike. You can learn more about this here and here (video: "Calendar Conversation").
  2. We learned another tip at a quiet one-on-one chat we had with the visitors after the lecture. "All" the parents were invited which meant we had the experts to ourselves. (The one other mother left after the lecture.) It was a truly enriching half hour.
Now the tip - it is as low-tech as they get:

You rest your child's hand in your palm and toss it up several times. Then stop. Wait for your child to respond by initiating the toss. I first tried it today and, as anticipated, C. did not respond. But it's so very easy and accessible  that I'm hoping to inundate her with this exercise. Hopefully, we'll see some action eventually. I'll keep you posted.

A variation on this theme that the duo recommended is to sit your child on your lap and rock together a few times. Then stop and wait for your child to initiate the rocking.  It doesn't get much simpler than that.

What prompted the expert duo to share those tips with us was my mention of something I learned from a teacher I bumped into on the street last week. She taught C. for several years until she committed the heinous crime of turning 70 and was put to pasture.

The fact that she was more energetic, dedicated, talented and youthful than the teachers half her age - and that she wanted to continue teaching - did not move the powers-that-be. No teacher after her has managed to connect with C. in any way.

But I digress. This teacher told me that the staff had been instructed by an expert in sexuality and the disabled  not to touch the students.  Ever. Not just to refrain from kissing or hugging  but from any physical contact in order to avoid sexual misconduct. I have also noticed that at school nobody ever caresses or hugs C.

When I mentioned this to the American duo they moaned. They then proceeded to tell us how crucial touch is to teaching the most profoundly disabled.

There's got to be a better solution to the issue of sexual molestation. 

Drug update:

C. has been on a therapeutic dose of  Valproic Acid for 2 weeks and yes! - there are fewer seizures/day. On some, it seems there are only 3 to 4, instead of 4 to 7.

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