Sunday, August 06, 2006

Green Envy

Dear Son was three years old when he got his first wheelchair. It was 5:45 p.m. and I had gone to the wheelchair vendor to pick it up and bring it home. It was late, close to closing time and the vendor gave me a crash course in how to put it together and take it apart. The wheelchair, was a dark green metallic and black seating. Basically, there was a lot of black and not much color. I chose the color because I definitely didn’t want black, too morbid for children, I thought.

I took it out to the car. You had to break it down (take it apart) to get it into the trunk and I was having trouble already. It all seemed a little bit foreign to me and the last thing I really wanted to learn was how to assemble a wheelchair. Never in my wildest dreams, had I imagined a wheelchair. Frustrated, I set the wheelchair upright in the trunk and tied the trunk down. I was not off to a good start.

The rain began soon after. Not only was the wheelchair getting wet, but the trunk was as well. The wheelchair seat was a black fabric, that would have to be washed and then dried, before he could use it. Tears began to stream down my face; I was so frustrated trying to put this thing together. How was it ever going to work?

We arrived home. The wheelchair, sat in my kitchen like a big black hole. It was the ugliest thing you could imagine, a big dark depressing hole right in the center of my kitchen. Why couldn’t they make these things more beautiful or even cheery for the kids?

The next few days didn’t seem much better. I tried sitting Dear Son in the wheelchair, properly as I should, with his feet strapped in for support, along with the strap over his hips and the one across his chest. All of the straps seemed so confining to me, like you were strapping him in an electric chair. Worse yet, was the fact that he couldn’t do anything in the chair but sit. I decided very quickly that this was not the life I imagined for Dear Son. I don’t know what is normal, I don’t know how people use these chairs, but to have a three year old sit in a wheelchair like a vegetable, was not my idea of a good time. I wanted things to be less restrictive, not more confining and I removed him from the chair.

The chair was used only for school, feeding, transportation and our daily walks on the Riverwalk. I rarely if ever used the chair in the house. Instead, Dear Son would play in his ball pit, where he would sometime fall asleep. We had a triple French door that looked out into our back yard and out to the pond. I would open the center door and Dear Son would lie there with his head on his Barney and look out at the pond, listening to the sound of the water drop from the aerator. Soon he would fall asleep. Anything was better than the wheelchair, at least he was living and enjoying life.

I had a special rule though, that I would never take pictures of Dear Son in his wheelchair. Whenever I would view a picture of a person in a wheelchair, I always saw the disability and never the child. This is not to say I don’t have any pictures of him in his wheelchair, but I “rarely” took them of him in his chair. I had to get pretty creative over the years, always trying to find something with some back support so he wouldn’t fall over, but it was definitely doable.

The wheelchair lasted for many years and soon Dear Son outgrew it. This time, I chose a candy apple red metallic for Dear Son’s chair. By this time, they had made some advancements in the chair, and you could get them to fold together so you could put it in the trunk of your car. The cost of this chair was $9,500, all of the customizations that were required to support him definitely added to the cost. I bought him a red down jacket for the winter to match his chair and the color seemed to capture Dear Son’s essence.

Earlier this year, we had to order a new wheelchair. Dear Son had deteriorated significantly and his current chair no longer supported him. He required a new “tilt” wheelchair, that I wrote about here. The tilt feature would make it easier for Dear Son to sit up, since you could tilt him back and allow better support to keep his airways open. After many months, both insurance companies approved the new chair. It was almost a done deal, until last week.

The new chair would require a fitting. In addition to the fitting, I had to select a new color for the wheelchair. I checked the brochure and went on-line to the website to see the new colors. I was trying to select a color that I thought would be appropriate for “high school”. I decided on a sapphire blue metallic. This color reminded me of the color of a Jaguar XJ8 that I liked many years ago. It would also complement Dear Son’s leg braces with the NFL logo on them in our home team’s colors of navy and orange. It was all a done deal.

At the fitting, I asked for the sample metal chips so I could see the color in person. The color was nothing like the brochure or the web site. Actually, it was the ugliest color I had ever seen. It was a dark blue with some silver glitter tossed on it. It looked way too girly for Dear Son. I went through all of the paint chips and none of them appealed to me. All very old and odd colors. It was like selecting a paint color for your new car using 1970 paint chips. In the end, I picked a color called, “Apple Green Metallic”. It is nothing close to an apple green but rather a sage green. It was the best I could do providing I didn’t want black. I really don’t feel too good about the color selection but there weren’t any great colors. If I were working full time, I would have the chair re-painted in that sapphire blue metallic by a custom car shop. But since I work part time, I’ll have to live with it.

Wheelchairs are boring which got me thinking about what they could do to make them more interesting, if cost weren’t an option of course. I think I would like to see more chrome on the wheels, to make it more like a car. It would be cool if the wheels maybe lit up with words on them, like the wheels featured on the HGTV show, “I Want That”. You can program messages into the wheels and then when Dear Son comes up, his wheels on his chair would flash, “hi” in lights and he could talk to people.

Or how about a line of NFL or NBA wheelchairs? These wheelchair would come in the colors of the NFL or NBA teams with perhaps an autographed signature across the headrest of a current favorite player or Hall of Fame player. How cool would that be? Maybe it could come with an autographed picture of the player too. Kind of like a whole package. Wouldn’t that be something for the boys at school to talk about. Gee, Dear Son, you have an autographed headrest by Michael Jordan! Or what about a Michael Jordan wheelchair that comes with a pair of Air Jordans? Certainly some disabled kids may not know who these players are, but they do recognize and love the attention from their peers. At the very least, I’d love to see NFL logos that could be printed on the chairs or even the headrest to customize the chairs.

I would also love to see a wheelchair that could convert to a bed/cot. This way, is the child needed to be changed in a washroom, you could just fold the chair back into a bench position and change them without lifting them out of the chair.

A wheelchair that could convert to a stander by remote control would be great too. Then Dear Son could stand and look people in the eye when he meets them. There is a big difference looking someone in the eye than having someone look down at you. I read recently that there is a saying that when you should, "Look straight into a person's eyes when you talk to them, especially if they are disabled. That way they know you are actually communicating with them, not pitying them." A wheelchair that allows them to stand would make a big difference since they could look them straight in the eye.

I would love to see custom backpacks designed to fit on the wheelchairs that were customized to match the paint on the wheelchairs.

I would like to see accessories that could be purchased to go with your chair-perhaps customized lunch boxes, back packs, diaper packs, etc. that would attach to the chair. Or even, some fabric options to match your own home. The vendor gives you the fabric measurements and you bring in the fabric for your chair. The vendor’s seamstress then cuts and makes the fabric for your chair.

The bottom line is that I’d like them to be more personal, so that they would give kids something to talk to these kids about their chairs. It would also help other people see the kid’s personality and not their disability.

6 comments: said...

Quickie wheelchairs are actually still pretty well-known for actual color choices, but that IS only the frame (from what I saw on the site, anyway). I remember hearing they're great about listening to customers - any idea if that's still true? Obviously you're not the only parent out there whose kid needs a chair like that.

My ex-girlfriend is actually training to become a wheelchair designer - I'll ask her if there's anything on the market like this. If not, hopefully she can change that! I'm no engineer, but most of the suggestions you make can't be THAT hard...

Also, first comment. Hi. ^^

Dream Mom said...

Thanks clover-elf for you response. Yes, we've had Quickie's before and they had much better color choices!

This is a newer manufacturer that actually makes a good chair and is willing to make some good customizations. This chair was hard to find because I needed a tilt chair that could be taken apart and put in a car vs. the vast majority of tilt chairs that are not broken down (taken apart) and instead are used in a wheelchair van. Because I can't afford a new vehicle, the vendor had to search around for a tilt chair that could be taken apart and yet was still sturdy.

We looked at one manufacturer, whose name escapes me, that had a tilt chair that could be taken apart and put into a car, however it wasn't very sturdy.

Overall, I think I will like the chair for it's function, I was just disappointed in the colors themselves. Many of the other manufacturers make better colors for their wheelchairs.

I also recall the vendor telling me some time ago that U.S. wheelchairs are designed according to what Medicaid will pay (we don't have Medicaid) whereas European wheelchair designers design more for comfort and design.

I am flattered at your "first" comment and look forward to hearing what your friend has to say.

zoe said...

My son was 16 when he got his first "set of wheels" a shiny black wheel chair. He is ambulatory, however does not have the stamina to go long distances. We use it mostly for when he has to do a lot of walking out in the community or when seizure activity has left him immobile. Because he does not have to be in it at all times I never gave much thought to the color, just the function of being able to get him from here to there. I love your idea of the chair folding down so Dear Son could be changed wherever you go and the standing converter--now that's really thinking outside the box (or the chair). And really how hard could it be to customize the chair as you described--you are on to something Dream Mom--

Terry said...

Great ideas! You're absolutely right...those customized chairs would create conversation with the kids, that's for sure.

The MSILF said...

I'm glad you're back!

purplequilter said...

Just a thought--try calling your local vocational-technical high school to see if they would be willing to repaint the chair in a cool custom color. They may be willing to do it in the automotive tech class for the cost of the paint. It couldn't hurt to ask, right? And you'd get a nicer looking chair for a whole lot less $$$! (I have a friend who recently retired as a vo-tech HS teacher, who says this tye of thing is not uncommon where he worked.)

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