Special, different, disabled

Happy birthday, C.

This week I gravitated to several articles sporting titles that featured the words "special needs children".  I had hoped to learn something relevant to C.  But the writers proved to be totally oblivious to profound disabilities. They focused on children with "different needs; different talents; different fortes" etc.

To their credit, the writers did note that such different children are often mistakenly labeled "disabled" and therefore suffer exclusion from mainstream schools. Here is one example: "Jewish Schools Are Failing Kids With Disabilities - And Themselves".

It's clear that this trend toward a broad definition of disability has resulted in the inclusion of vast numbers of  mildly affected or simply "out-of-the-box" children in this category. They and their families have probably benefited from improved services and assistance as a result.

But a side effect has been that the profoundly disabled now constitute a smaller percentage of the total. Consequently, they are often marginalized or forgotten.

Suggested remedies for this state of affairs?

On a personal note: yesterday was C.'s eighteenth birthday. We did not celebrate in any way. I suppose we could have had a small party and pretended that it was a happy occasion but I'm a pathetic actor - authenticity is more my speed. So we gave the performance a miss. After all, there isn't really anything to celebrate about C.'s sad life.

In our country, when a disabled child reaches eighteen, parents who choose to continue caring for their child can opt to become legal guardians. We underwent that switch two days ago at a meeting with two social security authority representatives held at C.'s school.

An M.D. (inexplicably, his field was psychiatry) was there to assess her level of disability. The maximum allotted is 175%. As in the past, C. aced the exam. In fact, the social security reps agreed to tell us their decision on the spot - something they said they never, ever do.

But, they explained, since our case was so clear-cut they didn't hesitate to tell us.