Remember our friend Jackie from The Book of Roo? Well after a nine month sabbatical she’s bag on the blogging scene. Brighten her day and go pay her a visit and see what she’s been up to. Visit her HERE.
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I heard you’re kinda pissed about a year-old Americans with Disabilities Act regulation requiring all commercial pools to be handicapped accessible. According to this article (http://www.huffingtonpost.com/2012/03/28/allen-west-handicapped-access_n_1385186.html) you’re pretty hot that hotel owners have to spend their own money on this “wasteful exercise.” And that the hotel facilities have to make these changes in a “short amount of time” in order to comply with the law. And that you think making commercial pools accessible will “accomplish nothing.”
Last night, Unbreakable Stride posted this incredible video of Nguyen Thi Phuong Anh performing on Vietnam’s Got Talent. Nguyen is a 15 year old from Vietnam and a member of the OI Family. Her performance awed the judges and they quickly moved her onto the semifinals! Read more about Nguyen HERE.
What was it like when you first began walking?
I could name all the major bones in my lower limbs before learning how to walk. It was around pre-school that I had my first long-leg braces (KFO’s) made. They are remembered with great disgust: the plastic was always sweaty against my skin so I would wear tights underneath, my sneakers always looked overly bloated as I tried to jam the foot piece in, and the clunky contraptions seemed to weigh about the same as a newborn elephant. My doctors and parents tried to make them more appealing: When I complained about how hot they always were they cut holes into the braces, then they printed cartoon characters on them – the left foot had Tweety bird and the right foot had Road Runner. Still I would dread putting them on once a day before school and rip off the velcro coverings the second I got home – relishing the feeling of carpet and the denim from my jeans against my skin.
My daughter, as you know, is looking forward to going away to school next year. It’s something I think about for only a few minutes at a time, because if I spend any longer on it, I start hyperventilating.
You think I’m kidding.
A couple of the schools we visited would theoretically work for her. I’ve seen other OI kids grow up and go away to college. At my university, long before I even *had* a child with OI, I knew a woman with OI who had graduated from my school and went on to be a full-time employee on campus. I know it’s possible. I’ve seen it happen.
How do you know how much/little to explain about O.I.?
This might come as a surprise to some, especially given the fact that I have a public blog – but I am actually a fairly shy person. It may take a whole semester of school before I start making friends. It’ll be more than a month before I’m comfortable in any work setting. I’m not likely to strike up conversation with fellow commuters on the train (no matter how many mornings I see the same faces). I would much prefer a party with 5 of my closest friends than a house party of 20+ strangers and 1 friend.
With that in mind, when people on the street or even acquaintances ask me why I’m in a wheelchair – you can bet that I am shy about my response too. It usually goes something like this:
Person: So can I ask you a question? Why are you in a wheelchair?
Me: Uhhm, well I have this thing.. um basically it makes my bones brittle. I fracture a lot.
I’m pretty sure right around the time the first cast was fitted for a broken limb the tradition of signing said cast began. It’s hard to find a cast without signatures or pictures drawn by the loved ones of the injured person. A new company Casttoo is taking this concept to a whole new level! Casts have never been more personal.
Photo courtesy of Casttoo.
On the TV show Parenthood the other night, the character named Max, a pre-teen who has Asperger’s Syndrome, was arguing with his gym teacher about participating in class. Max wanted to sit on the sidelines instead of submitting himself to torment by his classmates. His teacher insisted that he play. Max pointed to a student who was sitting out, a boy in a wheelchair, and said “He’s sitting out-why does HE get to sit out?”
To which the teacher responded “He’s sitting out because he’s disabled.
