The Enormous, Ridiculous Burden on Parents Caring For Severly Disabled Children

~ Laura

The New York Times has an article about a clinic in Kentucky that specializes in helping people with intellectual disabilities. A video goes along with the article, and it’s incredible because the video is so much more than the article. It isn’t about this clinic in Kentucky. It’s about the parents.

http://graphics8.nytimes.com/bcvideo/1.0/iframe/embed.html?videoId=100000003417322&playerType=embed

Published by Laura

6 thoughts on “The Enormous, Ridiculous Burden on Parents Caring For Severly Disabled Children”

  1. my grandmother kept my aunt at home till she died at the age of 21 in 1963. she was strongly encouraged to institutionalize her at birth but refused.

    i worked in such an institution in Massachusetts in the late 70s. it was far and away better than what would have been available for my aunt decades earlier, but still quite horrifying.

    i remember reading a lot about a family who had opted for surgery for their profoundly disabled daughter to keep her from growing up. it kept her small, and prevented puberty, enabling them to continue to provide for her in their home. many people were scandalized by that choice. i think it was brilliant. i wish i could find those articles.

    Like

    1. Ian Brown, a top Canadian journalist, wrote a book in 2008 about raising his severely disabled son with his spouse, fellow journalist Joanna Schneller. It’s called Boy in the Moon and is enlightening and heartbreaking. The toll is huge on the families.

      Like

    2. The surgery was done in Seattle Children’s Hospital:

      http://en.wikipedia.org/wiki/Ashley_Treatment (for the wikipedia version).

      I was very uncomfortable with the family’s motivation and explanation, especially because articles persistently repeated that a motivation was to “avoid the discomfort of large breasts and to avoid the discomfort of menstrual cramps.”

      Like

  3. I’m curious, what’s the conventional wisdom within special ed circles about institutionalization? (I know this has been very problematic in the past – I can’t help but think of One Flew Over the Cuckoo’s Nest.) Then again these days we accept nursing homes, understanding that you need to monitor the staff closely. Do special ed families view institutionalization, if done right, as a viable option?

    Like

    1. “Do special ed families view institutionalization, if done right, as a viable option?” Absolutely. Caring for severely disabled adults in the home is extremely isolating for the person and for the caretaker. It’s actually dangerous for the caretaker in some cases. There was one woman in Ohio – a political scientists named Laura (ugh) — who was killed by her severely autistic son.

      Like

Comments are closed.