My CRS Article Published in Action

I'm pretty excited because I have had an article on CRS published in the May/June issue of Action magazine, which is published by the United Spinal Association. The article is available here.

Kids in the News

Two great kids with CRS were recently in the news. The first is Ganem Mohammad Al Muftah, who plays a lot of sports, including ice hockey.

The second is Cody McCasland, who was recently featured in several stories, including With five pairs of legs, I feel 10 feet tall! and Boy, 7, hopes to follow success of Bladerunner Oscar Pistorius.

Recreation Links

Thank you to Michelle, Micah’s mother, for these great links.Gym Supply has these scooters like the ones they have in the gym at school. We found ours on Ebay. A home-made one was also used for years.

Plasma Car. This thing is AWESOME! Micah is on his second one and all the kids in the neighborhood have one now as well as all his cousins. Again, we bought our on Ebay but last Christmas I found them at Fry's Electronics cheaper than Ebay. I typically bought the 4-pack off Ebay just because I knew so many people that wanted one and we all went in together to split the shipping.

Micah also has a bike that he peddles with his hands. You can see a pic of that on his myspace page.The Ambucs give their hand-powered AmTrykes away for free. Ask your PT for a referral to them.

These are the Benik Knee Pads that we received at Texas Scottish Rite Hospital in Dallas. Micah used the XS for the longest until he developed his callus on his knees. Now he crawls on concrete with no problems. UGH!!!

His most prized possession is probably his 4-wheeler. It is a battery powered Power Wheels. My husband re-wired it so he would have a push button on the handle bars since he can't use the foot throttle. He goes everywhere on that thing.

I'd love to include more links/info from other parents of kids with CRS. Please send me your stuff!

Education and IDEA Links

Here are some helpful links about education and children with disabilities.

US Department of Education: IDEA
Technical Assistance Alliance for Parent Centers
Education Law Center

Preschools and Day Cares
The most essential for preschool and day care is Commonly Asked Questions About Child Care Centers and the Americans with Disabilities Act

Pennsylvania-Specific Education Links
Early Intervention in Pennsylvania
National Parenting Education Network

504 Plans and Universal Design
What is a 504 Plan?
Sample 504 Plans
504 Plan for a Child with Caudal Regression Syndrome

Kurt Fearnley Wins the Marathon in the Paralympics

Kurt Fearnley ended up winning the marathon in the Paralympics after his bad luck in the earlier races (see Kurt Fearnley’s Week from Hell). I liked what he said after winning: "It was as if it was just building in tension and building in hype. I knew in myself every single bad thing that happened just meant the next good thing that happened was going to be twice as good.”

Kurt Fearnley in the 2008 Paralympics

The Paralympics have been going on in China for quite some time now, and they aren't getting a fraction of the publicity the Olympics got. One of the big names in the news is Kurt Fearnley, who is ranked number one in the 1500 meter, the 5000 meter, and the marathon. He has been having some bad luck lately with first being assigned the wrong lane and then being hit from behind during the 1500 meter race yesterday: Kurt Fearnley's Rotten Luck.

Fearnley has sacral agenesis and is Australian. For more, see Athletes with CRS/SA.

Wheelchair Ballroom Dancing

I saw this great story about a woman, JoAnne Fluke, who has CRS and is a wheelchair ballroom dancer: With Groovability, Wheelchair Dancers Dismiss Notions of Disability. In describing why she likes dancing, she says, "I get the opportunity to really express how I feel. It feels like it doesn’t matter that I have wheels instead of feet. It’s in the heart. It’s in the soul.”