“Fee, Fie, Fo, Fum! I smell the blood of… Dad, whose blood is it?”
And so begins my third wheelchair evaluation of Charlie, a very spirited 5-year-old who likes the toys in my office more than getting evaluated.
Charlie, as you can see from the pictures, has one of those faces and personalities that quickly steals your heart. To truly understand Charlie, you need to know about him from the beginning.
Charlie came in for his first evaluation in December 2011. At the time, he was 18 months old and commando crawling everywhere due to his decreased leg movement from his spina bifida. He was referred for an evaluation for a wheelchair and a mobile stander.
Back then, his parents were carrying him most places when they were outside the house. They had a standard stroller they used at times, too. But Charlie was a precocious young man, and he wanted to move! We got him a mobile prone stander and eventually some hip/knee/ankle/foot orthoses, but neither were ever going to get him functional mobility.
Fortunately, I keep at least one manual chair in my office that is 10″ wide by 10″ deep — a size that was too large for him, but close enough that he could sit and play. He quickly inspected every toy I had in the office, as well as all the other big-kid wheelchairs that live here.
Upon evaluation, it turned out Charlie had good sitting balance and strong arms. So all he needed was a manual wheelchair with an upholstery back and side guards, and he was set. No extra positioning, just in case he developed problems down the road.
Figure 1: Charlie in his first wheelchair with his highmount footplate and room for him to grow.
We picked a pediatric wheelchair that had three important features. First, because he was going to be propelling all day, every day, it had to be a lightweight with a rigid frame. At the time of his evaluation, Charlie only weighed 25 lbs. We did not want to put him in a chair that weighed more than he did. He’d never be independent and high functioning with a chair that weighed a lot.
Second, it needed to allow us to get the center of gravity (COG) of the wheel exactly where it needed to be for him: right under his body. This is hard when the child has an 8″ sitting depth. So many pediatric wheelchairs on the market get tippy in the small sizes when the COG is in the correct position because there is not enough weight in the front of the chair.
Figure 2: An 11″ seat width enables Charlie to reach those wheels very well.
The final important feature was growth. We picked a frame that could not only easily grow in width (2″) and depth (3″), but that could also have the front and rear seat height easily adjusted. Most pediatric chairs do not have the ability to easily and fully adjust the front seat-to-floor height, so we were limited in our choices. Knowing Charlie was likely to have his chair for five years, we needed something that would remain appropriate both in size and sitting height during that time.
For Charlie, the best chair was a TiLite TWIST (Figure 1). With his small size (7″ knee to heel), we needed a high-mount footplate. We got him 4″ light-up casters, because every 1-year-old needs light-up casters. The only positioning supports on his chair were extra-small side guards and tension-adjustable upholstery. Given his size and weight, he has been able to safely use a standard foam cushion.
To many people, his seat sizing was daring for a wheelchair for a kid his age. His hip width at evaluation was only 9.5″, so we chose a seat width of 11″. As you can see from his initial delivery, he does not have much room for growth in width…something that scares a lot of people. If we had gone wider, given his small size, he would have never been able to reach his wheels. But as you can see, he’s able to get to the tires well with the current setup (Figure 2).
Figure 3: Now 5 years old, Charlie needs to sit taller to better interact with pals.
The Life & Times of Charlie
Nothing has slowed Charlie down since getting his wheelchair. The week that he got it, he ran into a wheelchair athlete in a local mall and he raced her…with no fear! He happily goes up to strangers and talks to them, like any other outgoing child his age would do. He and his family have never seen his wheelchair as a burden or something to be sad or frustrated to use. They see it as an enabling device, and they love it. Charlie has been and is a very independent young man, and nothing gets in his way.
Charlie recently came back to visit me to make a few modifications to his wheelchair (Figures 3-5). He’s had the chair for almost four years, and this is the first substantial work we’ve needed to do on this chair. He recently had heel cord lengthenings, so he was wearing bright green casts that weren’t slowing him down a bit.
Figure 4: We grew the seat depth, but are NOT widening Charlie’s wheelchair.
Since he got the chair, he’s lost his baby fat and grown 5″ taller. He’s now sitting too low on his wheels, and his seat depth is a bit short. So we’re growing the seat depth of the chair, giving him a pressure-relieving cushion, and raising him up to sit 2″ taller so he’ll be at a better height to interact with his peers. All these things can be easily done with his wheelchair. Aside from the new cushion, he doesn’t even need any parts to modify the wheelchair.
Important to note for those people shocked that we only gave him 1.5” of extra hip width: We are not widening the wheelchair. Yes, a small child has grown for four years, and the width of his chair still fits him properly. This is a very important lesson to learn. We picked this frame partially because we could easily widen it if needed. But so far, he hasn’t outgrown that width.
Figure 5: Here’s how Charlie will look with the modifications.
So often I see kids in wheelchairs that at the five-year mark, are still 2″ too wide for the kid. With the ease of growing width in pediatric wheelchairs, we need to be making them narrower at the start. If a chair is 2″ too wide after five years, I wonder what the chair looked like when the child first propelled it.
Charlie will be riding the bus when school starts.
You can glimpse the future of what Charlie will look like once his chair is modified. We put him in a chair I have in my lab that sat him taller. He looked much better both from a sitting height and a propulsion standpoint. Much to the horror of his parents, with the better height for propulsion, he’s even faster, and he can maneuver even better. They’re happy for him, but not so overjoyed that they’ll be running even faster to keep up with him.
With Charlie’s energy and his high functioning in the wheelchair, he’s going to be starting with the local wheelchair sports program in the fall. I refuse to name it for fear of getting the director in trouble because he’s not really supposed to let kids start until they are 6 years old. But considering that I started bugging him to let Charlie play when he was 2 years old, I think he’s held out long enough.
The best part of seating clinic: Checking out the new toys.
So Charlie has lots of firsts ahead in the next few months. He’s going to be riding the bus to school for the first time. He’s going to start playing sports with other kids with physical disabilities. And, he’s a new big brother.
He’s got great family support, a personality that makes you want to do anything that he wants, and the wheels to do it. His mom says he wants to the President of the United States when grows up. I’d vote for him!