Posted on: February 17th, 2012 by Sandy
Is it difficult being the only one?
When you’re a child you lean on your family and parents to show you how to be a person. Everyone comes from some perspective, rules, ideals, values, culture, or some understanding of the world/society in which we live. It is through this construct that our parents and family raise us. If a child is black their family teaches them about what it’s like to be black; if they are Eskimos a child is shown how to survive as an Eskimo; if a child is born into a family of politicians they quickly learn about life in public office. But when a genetic mutation happens it means this is a child that has something no one else in the family has. Who does the kid lean on? Who is going to tell the child about the perks or pitfalls? Who serves as the role model? Who is going to show him or her the ropes?
Posted on: February 17th, 2012 by Meg Currell
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.
Posted on: February 10th, 2012 by Sandy
How do you keep above the day-to-day struggles?
This question was posed in one of the OI Facebook groups and (I believe) comes from a parent of a young child with OI. The question got me thinking about the day-to-day struggles of living with OI as the kid vs the day-to-day struggles of the caretaker or parent. But since I will only write from what I know, I wanted to answer this question from the perspective of the kid with OI – with the hopes that it will provide some answers for parents and caretakers.
Posted on: February 9th, 2012 by Amanda
The OI Conference is July 13-15, 2012 in Washington, DC. That means in less than 5 months, so many of my OI friends will be meeting each other or reuniting with each other. I’ve read stories and reviews from conference but I’ve never been!
I’ll be honest, I was ecstatic at the prospect of attending. But, the cost is astronomical! When you add up food not provided by the conference fee, transportation $120, $350 for registration (That’s for two early bird registrations at $175 a piece.), $320ish for hotels, plus parking… well we’re looking at an almost $1,000 trip. I don’t know about you but I don’t have funds like that floating around. I wish I did, I’d register myself and my Dad in a heartbeat. I have until April to determine if I’m actually going. I did reserve a room, just in case.
Posted on: February 3rd, 2012 by Sandy
How do you handle overbearing school nurses or administrators?
It doesn’t seem to matter how many “fracture procedures” you may present the school with before the year begins. And it doesn’t matter how many doctor’s notes you have signed that allow the administration of pain medications, or forms that say “the child should not be sent to the local emergency room..” In my experience, when fractures happen at school all of that is forgotten and most things are done from the perspective of their safety a.k.a liability.
When I was younger and fractured in school, my mother would often swing by the school to put on an old splint or put my arm in a sling and then send me back off to class. Though I was never a part of the “difference of opinions” that she had with the school nurse — when I got home I would never hear the end of it: “the school can’t be calling me every single time for every little bump or accident you have. They can’t expect me to be taking you out of class and driving you to the doctor’s for a shoulder that we both know isn’t broken..” and I can’t count how many times I have heard her say “I know my child best, and I trust what she says the most — if Sandy says it’s not broken, then it’s not broken..”
Posted on: January 31st, 2012 by Amanda
There are so many myths related to osteogenesis imperfecta, it can be comical at times. While perusing the OI Foundation website, I noticed a new section dedicated to dispelling OI myths. Check it out, HERE.
What are the OI myths that annoy you the most?
I personally get agitated with the myth that some individuals with OI can outgrow the disorder. I guess I’m not one of the blessed few who outgrew OI.
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Posted on: January 27th, 2012 by Sandy
What are your own hopes for the disability rights movement?
Earlier this week I wrote about a neat side project I am working on that involves recording a small piece of the disability advocacy history in Massachusetts. As I’m learning about architectural barriers, the ADA, and accessible public transportation — many of my own pursuits towards independence has been put into perspective. As one of my interviewees said, back in the 70′s the goal was to “just get disabled people into the buildings… never mind accessible bathrooms.”
But now that there are laws and standards that allow people with disabilities to have a presence in society, where else should the disability rights movement go? What would I like to see from the movement? I am really happy that a reader submitted this question because it gave me a chance to think about my own small role in the movement!
Posted on: January 24th, 2012 by Amanda
Like almost everyone I know, I live on a budget. I use coupons and buy my clothes on clearance or on sale. I splurge on travel and the occasional designer purse. But really I keep it on an even keel and always stay within my budget.
Life on a budget has brought to life my brand-new second blog, The Affordable Life. The Affordable Life is all about helping others figure out ways to save a buck and learning to enjoy life on a budget. Of course, I’m not alone in this new venture. I’m joined by younger brother Aaron. (He’s a non-OIer.)
Come and join in our fun, oh and share your own money saving tips if you’re up for it. Visit us by clicking HERE or follow us on twitter @theafflife.
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Posted on: January 20th, 2012 by Sandy
How did you learn to advocate for your needs in the classroom?
“Sandy do you want to tell your teachers some things that would help you hear better?” I think I was in the sixth or seventh grade. My speech therapist that I’d been working with since the first grade had prepped me for this part of the conversation. It was early in the school year and we were gathered around a table going over my IEP plan.
In the beginning my speech therapist and I worked on pronouncing my own name. The “S” at the beginning of “Sandy” was pretty much silent to me until I was about 8 or so. “Hi, my name is Thandy” is how I would introduce myself to others as a kid. We also worked on endings of words that had a “t”, “-ed”, “-s” or the one I hated most: “-its.” She helped me learn how to carry my sentences all the way through when I spoke aloud, reminding me to not drop off at the end. I didn’t consider her to be just my speech therapist, she taught me language and how it can be used, how it benefits all of us. But the most important thing I learned from Mrs. B was how to advocate for myself.
Posted on: January 18th, 2012 by Amanda
A special congratulation is due to our friend Jacqueline from Unbreakable Stride. She recently received word that she won the $250 Team Refuel grant. Way to go! Keep up great work and congratulations!
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