Friday, October 14, 2011

Explaining disability

I hope to include resources on explaining your child's disability in the January issue of BLOOM magazine.

I'm interested in any great articles you've read on this topic, or websites that can help parents come up with a simple, upbeat description tailored to different ages.

Please post any resources you recommend we share with readers.

Thanks! Louise

Reactions:

7 comments:

Hi, Louise!

I think one of the best websites for epilepsy is epilepsy.com -- it's cutting-edge, user-friendly, etc.

I'd also recommend the magazine Exceptional Parent.

Thanks Elizabeth! I will head on over to EP to see if I can search specific articles. And also check out epilepsy.com

Thanks!

Hi Louise,

For epilepsy, my favorite site--for kids AND adults--is www.theseeprogram.com. They have an awesome kid-friendly animation describing seizures (http://www.theseeprogram.com/html/s_e_e__animations.html). For parents, there is a 3-part series in their library called "Beating Bad Seizures" that can help parents be the best seizure-sleuths and informed advocates they can be. I wish I'd known about this site (if it was available then) when my daughter's epilepsy was diagnosed.

I always find kids books to be the best. Then I give a small list of other resources (if they want to go for more). But, the best by far from middle school on was a little pamphlet that my daughter and I made together about who she was, what she loved, how people described her, her challenges, how to support her, and how to adapt curriculum. Sounds like a lot, but it really wasn't, and it was graphic and had photos and looked great and teachers loved it (it was different, accessible, helpful), and my daughter loved handing them out. Also, it keeps the focus on the child/person (and how the disability affects them), not just on the disability. These days you can direct most people to good resources on the internet, but the personal manifestation makes all the difference. I could certainly scan it, if you think anyone might be interested.

Hi Louise - I wrote an article about Staring a while back that might be useful but I also have a few other ideas I'll e-mail you as well. In the meantime, here's a link http://www.mlive.com/health/index.ssf/2011/03/to_stare_or_not_to_stare_how_t.html

Tim Gort - A Dad's View

Hi, I just wanted to let you know that I've listed you in the Disability Blog Hub: http://www.squidoo.com/disability-blog-hub Keep up the good work!

Louise,

I absolutely love this idea and will try to help you. However, explaining the vast spectrum of cerebral palsy may proof difficult. For example, on page 26 of BLOOM's summer issue, there is a caption which reads "friendship", and directly below this is a beautiful picture of four kids, each with CP. Needless to say, these same kids do not only possess a wide range of abilities or challenges, but the more severe cases have yet to be fully seen or understood by the general population. In fact, I would go even futher and say, "Most healthcare professionals, outside the realm of pediatrics, are unaware of how to provide treatment for those with disabilities."

Matt Kamaratakis