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June 10, 2011

The nightmares of reality

http://www.jewishjournal.com/blog/item/the_nightmares_of_reality_20110609/

I don’t spend much time worrying about vampires, mutant aliens or even earthquakes (okay maybe a little) but the fear monster that lurks in the back of my head is: will someone else ever be able to take care of our teenage son Danny with multiple disabilities as well as we do?

This fear was intensified the other day while reading the NY Times article of June 5th, 2011 with the blood curdling headline of   A Disabled Boy’s Death, and a System in Disarray, part of a larger investigative series,  highlighted the problem of low-paid staff, some with criminal backgrounds, who often provide the hands-on caregiving on a daily basis. After just finishing reading “The Beautiful Girl” by Rachel Simon, which provides a historical fictionalized account of similar state institutions during the 60s , including many acts of cruelty and violence against disabled residents, I had felt thankful that we were living in better, more enlightened times; the NY Times article felt like a slap in the face.

Because of this investigative series of articles, I am sure that a full government investigation will take place, some people (mostly lower level) administrators will be fired, and things will improve, at least in the short run. But the fear that a crazed, stoned minimum wage worker can hurt or harm our son remains high.

While worrying about this distant future, I do have something far more pleasant to look forward to (as does he)—the Camp Ramah California Tikvah program which starts in just a few weeks.  Danny will be accompanied by a wonderful aide, who we have literally known since his birth, and I know that Danny will be well-cared for, even spoiled by having tons of attention from campers, and staff. We have already begun to pack the first duffel bag, and almost every day Danny finds another toy, a book, that he wants to see packed.

We will all benefit from the 26-night break (but who’s counting?), and will enjoy a happy reunion mid-July The question is, how can we take that wonderful away-from-home intensive Jewish experience (with a pool to boot!) and turn that into an adult lifetime?

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