Sunday, May 22, 2011

The Best Birthday Present Ever

After a delicious breakfast this morning the whole family packed in the car and headed a bit south to the New Jersey Abilities Expo. This is a four-day annual event that we missed last year due to travel so we were excited to check it out. We weren't sure what to expect but since it was free of charge we figured there was no harm in stopping by.

The atmosphere was great. It was nice to see so many wheelchair users including lots of happy, healthy adults with similar mobility as Joseph. Every exhibitor was great (including some great wheelchair-bound professionals) and, of course, it was all very wheelchair friendly. Even when Joseph and William managed to team up and plow a power chair through a couple of exhibits there was nothing but good-natured chuckling.

We found several exhibits that we expected and were looking forward to. Many car companies had accessible vehicles on display. We saw lots of configurations for rolling into vans and heard a bit about adapting cars for hand controls. That's a few years down the line, of course, but it's nice to know what's out there. We stopped by a few bathroom renovation tables to pick up information. That project isn't imminent, either, but eventually we hope to have a roll-in shower and roll-under vanity on the main floor. We even happened across the vendor who consulted with us on Joseph's wheelchair and he made a couple of significant on-the-spot adjustments for us.

Then we happened across what I'm starting to think might be the Best Birthday Present Ever: the FreeWheel. In short, FreeWheel is a portable, removable third wheel that you clip on to the front of your chair. That might not sound so impressive so let me back up a little.

Joseph's wheelchair is a fantastic machine. It's really a state-of-the-art manual chair. Wheelchairs are designed with the two large wheels that the operator pushes and then two front casters down next to the footplate. The casters keep you balanced and they swivel and all so they're great and totally necessary . . . as long as you are on a nice, level surface. If those casters hit even a very small bump at any speed the entire chair pitches forward and the operator is either thrown out or, in Joseph's case, suspended in his chair with his face planted in the pavement. Joseph has dumped his chair many times and we are glad that the only injury he has sustained thus far is a scraped chin. But it is a terrifying experience for him (and for me). And it takes some work to get him upright again.

Joseph deals with this caster problem pretty well. We walk around our neighborhood every day and often go out for all day jaunts in New York City. Joseph has gotten pretty good at paying close attention to little bumps in the sidewalk and he just pops a little wheelie to jump the bump. Most of the time this works fine but it means that Joseph uses a lot of energy paying attention to the ground (especially in a new setting) and not as much paying attention to his surroundings. And we we are often stuck at a street crossing with crowded or non-existent curb breaks which means that Eric has to manually bump Joseph up and down. If I'm on my own with the kids this situation can be dangerous if I'm trying to keep an eye on the other three, get a stroller out of traffic and get Joseph up and down a curb. Let's just say I don't take all four kids out on my own all that much.

And then there's the problem of all the "non-smooth" surfaces. In our own neighborhood there are cobblestone driveways or patches of sidewalk that are impossible for Joseph to wheel on. Grass is nearly impossible. Gravel is impossible. Sand is impossible. Going on a trail in the woods is impossible. Ice and snow (even a little bit) is impossible. There are so many places we simply don't go because they aren't wheelchair friendly.

We've known for a long time, of course, that you can get three-wheel bikes. The problem with these is that they are high-end racing models and they are completely impractical unless you are actively working out. You wouldn't, for example, commute to a friend's house in one of these because they'd be impossible in a house. They are also outrageously expensive. What to do? Eric has been brainstorming for awhile how to jerry rig some kind of bicycle attachment to the wheelchair. But someone beat him to it. Check out this video:

Now, an important disclaimer. This wheelchair user is obviously very physically fit and in the prime of his life. Joseph won't be doing quite all those things. But let me emphasize that every single thing pictured in that video is impossible or very nearly so even for that guy without the FreeWheel. If you go to the FreeWheel website you can see other videos--including some of kids--and read more about this.

And the best thing, as you saw in this video, is that the wheel is completely portable and removable. You install a small perch on the back of the chair and the five-pound wheel hangs securely. When you want to use it, you just detach and clip it on to the footplate. The entire round trip is less than a minute. We talked for a long time with the inventor (a quadrapalegic dad who wanted to play in the yard with his kids) and we are extremely excited about this. We couldn't pick one up today because they attachment mechanism needs to be custom-built for a child's chair but we will be calling the measurements in very soon.

I don't think it is an exaggeration to say that this could be life-changing for Joseph.

As for what Margaret and William got out of the Expo, they call these their "I Love Joseph" tatoos (don't worry, they're temporary):

Thanks to Robyn for the "rugged, dirty boy pictures".