While I didn’t attend the OI conference last weekend, Sandy from Perfectly Imperfecta did. Check out her reflections on the conference HERE.
And, may I say I’m majorly jealous she was recognized by conference attendees as the “blogger”.
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This will be the last Fracture Free Friday question I’ll be answering until my return in September! Please have a safe summer everyone & continue sending me questions to answer at: oi.perfect@yahoo.com THANKS!!
This is a million dollar question and just like the many ways a person could dream up to use a million dollars, there are thousands of answers to this question — and I don’t believe that any one of them is right. With that said, here is my answer to it:
The above categories and questions are only my own personal ‘guidelines’ of what I consider before I get myself involved – I’m sure there are many other questions you may consider in your own mind!
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Here are a list of a few things that I have been told, or have heard being said — and my response is usually a silent groan followed by a disapproving shake of the head.
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Have you ever given a presentation to your classmates about O.I.?
Yes! When I was younger, my elementary school had a week called “Understanding Me.” This was the week where fourth and fifth graders learned about people with varying abilities via hands-on learning, guest speakers, and presentations from yours truly.
Because my friends had grown up with me since Kindergarten they knew, by then, what to expect from me. So while they saw how I lived my life with them at school, they had no idea what my life was like when the school day ended. And very few knew what my life was like at home. This was the part of the “Understanding Me” week that I enjoyed sharing with my classmates, that other part of my life. Things like how I moved around at home (at that time mostly by crawling around), whether or not my brothers or anyone else in my family had O.I., how many fractures I have had, or what my first broken bone was. I remember talking about how my parents still had to carry me around “like a baby,” that I would never grow to be taller than 3ft., why I needed to wear leg braces, and when it was that my mother found out “something was wrong” during her pregnancy.
What are the upsides to being in a wheelchair?
1. Awesome concert seating accommodations. Whenever I go to concerts or sporting events I have always been appropriately accommodated. This usually means getting seats that enable me to view the stage / field, but also maintains my safety. Sometimes there is a roped off section for wheelchair seating (plus one or two guests), other times accessible seating is intermingled with the rest of the concert goers. Either way though, I have never complained about this and … neither have my friends =)
2. Courteous and chivalrous behavior. Although there will be some obnoxiously rude moments, for the most part I can expect people will treat me courteously. Who said chivalry was dead? Nothing says chivalry like being able to board planes before first-class passengers.
Are there right words to say to a parent who just received an O.I. diagnosis?
I once imagined what a newborn with a disability might tell a parent.
But like I said, I just imagined it. It might be quite awhile before we know exactly what those new additions to our families are really thinking.
I think that to answer this question there are two possible perspectives: you might already have experience with O.I. yourself (as either a fellow parent or as the child), or you might not have any first-hand experience. In this instance I can’t say for certain that one perspective may be any better than the other.
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.
