Does Using AT Admit Failure?
Molly and friends
Does Using Assistive Technology Admit Failure?
by Kathie Basten, Mount Pleasant, South Carolina
I remember that hot sunny day when I drove to a nearby town to pick up Molly’s first wheelchair. Although the wheelchair representative said he couldn’t bring the chair to our town for another month, I couldn’t wait. It had been paid for by insurance; it had been ready for weeks, and it was sitting in a storeroom gathering dust. She needed this chair yesterday. Though we went off with a map in hand, in actuality we were driving down the road to a town called "Different."
Molly was tiny when she was born. To see me hold her, you wouldn’t know she had Spina Bifida. When I pushed her in a stroller, you wouldn’t know she had Spina Bifida. If her socks were carefully pulled up over her ankle foot orthotics, you wouldn’t know she had Spina Bifida. Sometimes that made it easier. But I knew, and most importantly, she knew.
She knew, and I knew. Her language skills were behind; she didn’t smile often. Now, I realize that this was because she didn’t have access to her world like most children her age. She could only touch the flowers and delighted in their sweet fragrance if I held her close enough to the flowers. As good a mother as I tried to be between treatment plans and medical procedures, I didn’t take much time to hold her close to the flowers.
At her early interventionist’s urging, we scheduled time for her to "play in the dirt," before she got her first wheelchair. When she was dependent on me, typical "little kid stuff" did not occur naturally. That’s what that first wheelchair allowed her to do. Smell flowers, play in dirt. Experiences that seem so simple. Experiences that are so important.
I knew from the moment she was born that she would use a wheelchair. Still, seeing her in it for the first time took my breath away. Mixed feelings enveloped me… sadness, frustration, but ultimately happiness. The bulky expensive piece of metal that I both loved and hated at the same time was one of the tools she needed to help her become the independent girl she is now.
That first wheelchair was bright red. I refused to order pink. Everyone thought pink was so "cute." I saw nothing "cute" about it. So, down the road in the red wheelchair we ventured - down the road a little further to "Different." Part of being in "Different" was that every time we went anywhere in public, there were the questions. There were many comments, religious interpretations, and tidbits of help from well-meaning people.
What the family saw was Molly experiencing her world, the world from which she would take and give so much. During her preschool graduation she picked her self out of the drawing that had been given to her teacher. She described herself as the "girl with the long luxurious hair." Not "the girl in the red wheelchair."
That’s the story of our first "big ticket" assistive technology item. We are now getting Molly a power chair that will give her access to park trails, playgrounds and more parts of her world. Places that she will miss, if she can’t get there under her own strength or if I’m not there to push her. Much like those early flowers she didn’t get to smell.
It’s been interesting, but sad in a way, that many of the same situations that we encountered with that first chair are here again. Well-meaning comments, such as, "She’ll get lazy. If she can push- she should push." Does getting the powered wheelchair mean that she is worse? Part of me wants to explain. Using assistive technology is not failure. I’ve pushed her too many times through rock and gravel. Even though I have bought the coolest " baby jogger" I can find, even though I never call it that in front of her, she knows what it is.
Using powered mobility is much like driving a little further down that road to "Different." She needs this piece of equipment. No surgery, therapy or prayers will do for her what this piece of assistive technology can do.
Again, I have had that moment when my breath leaves me and I feel sad, even angry. Still, I know those emotions will be replaced with joy - the joy of seeing her wheel down our street with her friends, going much too fast. Chatting about boys with her friends, when they will be on bikes and rollerblades. They’ll all be on wheels - what kind of wheels they are using won’t matter to them.
There is no way to adequately express the help that I’ve received from the South Carolina Assistive Technology Program in our search for appropriate technology for Molly, as well as our effective use of it at school, home, and play. The SCATP staff has given me invaluable information and most of all, friendship as we journey this road to "Different" together.
Although it intimidated me at first, assistive technology has become my friend. In our family, using assistive technology does not admit failure. Using assistive technology has allowed Molly to succeed at what used to be impossible.
Reprinted from the South Carolina Assistive Technology Program’s Assistive Technology News,