The Ability Expo this weekend … TOTAL SUCCESS!
We got there early Saturday morning thinking we would need the entire day…it turns out we didn’t. The expo has a LOT of stuff but I think it’s mostly geared towards adults with disabilities. They had a few things for children but not too much – it seems to be mostly for people who have had accidents or injuries who can talk, sit upright, etc…Not so much for children with severe cerebral palsy. So there wasn’t too much to see that was applicable towards our situation.
But we did accomplish a couple of major goals:
While I was busy scouting around for wheelchairs and/or therapy equipment or devices to help Nathan gain more function, Owen found something entirely different:
Meet the Chill Out Chair
Nathan LOVES his little prince chair. We brought it home with us and he is HAPPY as can be. Finally he has a chair where he is fully supported, his head’s not flopping, where he is entirely and completely comfortable. It was a total SCORE.
From the same company, Freedom Concepts, we also found an adapted tricycle. At first I thought there was no way they’d have something that would just “work” for Nathan – I figured they’d have to custom-make one for him. But we tried him in the triciclye and it WORKED!
I posted this video yesterday but I’ll post it again today:
[youtube http://www.youtube.com/watch?v=xbkcW0qOV4Q&hl=en_US&fs=1&rel=0]
And here are some pics of him trying it out at home with daddy:
I can’t tell you how happy I am to have something that Nathan can use that is both enjoyable to him and therapeutic! At the moment we have to push him in it, but I have no doubt he will learn to pedal it on his own in due time. My plan is to use this when we go to the mall, when we go to the park, and all sorts of places – so instead of sitting in a wheelchair, he can actually exercise while we’re out and about!
Another SCORE!
We also worked with the VP of Prime Engineering, the makers of the KidWalk. As it turns out, one of the parts on Nathan’s kidwalk was, and always has been, broken – which was making it that much harder for Nathan to move in it. We also didn’t have all the right components for it. He took the kidwalk with him and is going to switch out all of the parts that need switching and really customize it for Nathan, then mail it back to us by the end of the week.
Guess what? Yet another SCORE!
As you can see, these 3 things alone made for a super successful event for us.
A few other things that we learned/figured out at the expo:
* We saw a whole bunch of adapted vans and asked about van conversions. Our conclusion – there’s no way we’re going to tackle this any time soon. I didn’t like the side or rear conversions, as you lose a lot of space in the van. Plus they are VERY expensive! So my plan is to get a little ramp that I can manually attach to the back of our Toyota Sienna to wheel the wheelchair and trike into the car, and then to buy him a car seat that swivels out so he’s easy to load in and out of the car. My hope is that this will work for a few more years.
* The “ideal” wheelchair that I was looking for does not exist. Sunrise Medical was there (makers of the Zippie/Quickie/KidKart) and Convaid was there and a couple of others. What I realized – I really really don’t like any of those chairs and I think I made the right choice the first time with the Ormessa Bug. It’s light, maneuverable, and easy to take when we’re out and about. I’ve decided that, instead of going with something like the Zippie, I’m going to stick to the same style of chair. My three favorites for now are the Kids Fast, the next size up of the Ormesa Bug, or the Chunc 45. Here’s a pic of a little girl in the Chunc 45 . We are seeing Nathan’s DME supplier on Wednesday who will measure/fit him for a wheelchair – then we’ll take the necessary next steps. At the expo I did see some kids in their wheelchairs and saw some on display and at least it convinced me that what I want for Nathan doesn’t exist – lightweight, supportive, easy to transport, fun. So we’ll have to settle for one of the above.
The rest of the expo really wasn’t very interesting, and fortunately we were out of there and on our way home by 2 pm – which allowed us to grab the RV and head to the beach!
And one final adaptation, which is unrelated to the Abilities Expo.
Sue, from Grandma’s Babies, custom-made this chair for Nathan:
It took some tweaking but it’s getting there! What’s cool about it is that I can toss it in the car and take it with us when we are going somewhere just to eat or to chill – so I don’t have to load and unload the wheelchair. We’ve used it to go to the movie theater, to restaurants, and today – at Starbucks. I am also trying to set it up with a tray so I can attach it to any chair at home or at friend’s house and he can sit in it and play.
So we seem to be moving forward with giving Nathan the tools to “access” the world around him. Hooray!!!!
