I've had 26 surgeries -- the last one when I was 15. The majority of them have been to straighten my joints of my hands, feet and knees. I've also had surgery to correct scoliosis and brain surgery when my spine began compressing my brain stem.
What daily activities do you find are influenced by Freeman-Sheldon Syndrome?
My daily self-care is influenced -- showering, dressing, meal preparation. Transportation is also affected, but luckily DeKalb has a wonderful handicapped-accessible bus system, so I can go places during the day, which allows me to be more independent.
What Assistive Tech devices did you use when you where a child? (Wheelchair, walker, type aid etc. It can be low tech items too like a bath chair or a grabber tool)
I used a variety of assistive devices growing up. These devices not only helped me medically, but also developmentally and socially. After my surgeries, I sometimes had to wear splints -- though as a kid, I hated them -- and I remember how excited I was when I got my first motorized wheelchair. My mom says that I kept thanking her for getting it for me because I could keep up with the other kids. For once, I didn't feel so different -- I was just like the other kids playing on the playground or in the gym. I also got my first shortly after I started walking, which, because of my FSS, didn't happen until I was around 4.
Did you need any devices for school?
I used my wheelchair most of the day and also met with an occupational and physical therapist; I was taken out of class for those sessions. They were great for charting my progress and making sure I had everything I needed to succeed both inside and outside the classroom.
Were your teachers helping you get AT devices you might have required?
YES! My teachers were always so great. I also had an individual aide from kindergarten through high school, mainly for activities of daily living and any other assistance I might need.
Did you or your parents do research on AT devices on your own to find what might work best for you?
My parents were always my biggest advocates, both when it came to my disability and my experiences in school. They got me my first motorized wheelchair and never let me use my disability as a crutch or an excuse not to try my best.
How much was your wheelchair?
Oh, buying a wheelchair, surprisingly, is like buying a new car. You go to a showroom and look at all sorts of models and figure out if it needs any sort of customization, like the special seat I have on mine. The wheelchair I have now is around $3,500.
How often does it need maintenance?
Thankfully, technology has come a long way! It used to be that my wheelchair needed regular maintenance -- it seemed like the motor was always breaking down. I was lucky that my dad always knew just how to fix it! My wheelchair now is super awesome and actually hasn't required any maintenance in the few years I've had it. I've had to replace the battery every year or so, but that's it -- knock on wood! :)
Obviously, the main device I use now is my wheelchair. I don't know where I'd be without it! I also have a walker, which I need to use more, especially for exercise. For showering, I use a bath chair, which makes it really easy. We also had a ramp installed coming into the house from the garage so I can get in and out by myself.
If you were to design your own house, what would it include to be more accessible to you? (lower counters, wide halls, ramps, elevators, lifts to get in and out of the tub etc.)
That's a funny questions, because my mom and I are always saying, "Why didn't we get this when we bought this house..." We should have been thinking more about how to make this house more disability friendly. If I could design my dream house, I'd get lower counters and cabinets for cooking and perhaps a walk-in shower with one of those big seats.
What do you think about buildings that are not wheel chair accessible? How does this the influence the independence an individual has?
Honestly, it boggles my mind every time I come across a building that isn't wheelchair accessible. The Americans With Disabilities Act is nothing new and it can be extremely frustrating for people who have worked so hard for independence. My parents have taught me the value of independence my entire life and overall, society has come a long way in being a more inclusive culture, but there are still some obstacles we need to overcome.
Is there any AT device you wish you had to assist in daily life? (Car lift etc.)
We've decided that when we get our next car, we're going to hopefully get a lift with it. My mom has become a pro at putting my wheelchair in the car, but it's always good to plan ahead.