Well I went to the People in Motion show yesterday and saw not one thing that would assist me in getting a new wheel chair for Dev, but I did find out some new stuff for him, like information on air travel, a camping spot that is totally accessible for him, a sledge hockey team in Toronto here where the coach thinks that Dev would really enjoy playing. His Dad could push him and we could attach the stick somewhere onto his sledge.
Like the coach said, it’s not so much about ability as it is about having fun. He seemed like a really nice guy and he gave us some advice on getting Dev skiing and end everything.
We also came across a booth that had vendors for disabled bikes and we asked them about getting a tandem bike for Dev and they said that they had some bikes that would work as well as a bike trailer. But the sledge hockey coach gave us the name of a recreational therapist and said that he’d be the best guy to ask because he deals with sporting equipment all day long.
We looked at adapted vehicles because in the future we’ll need to be getting something like that. One company does an amazing job and the sample full sized van that they had on display looked like it was the only thing that would work for our family. We spoke to the rep and he agreed with us that modifying a mini-van makes for a very cramped ride. He said that if you are willing to take out the passenger front seat it makes it a bit better, but really that’s not an option for families.
We got a list of charities that assist in the financial aspect of modifying the van, he told us that if you hit every Charity that you can and can get money from all of them you’d be looking at somewhere around $40,000 in funding for the van. Sadly it looks like the van with all the adapted conversions will come in around $80,000 before taxes.
I’m thinking that it’s time to look into setting up a Charity fund for Dev so that we can raise money ourselves, as well as going to other charities like the March of Dimes, Variety Village, Easter Seals, PC Kids, etc. I just don’t know much about how to raise money for charity, I guess you’ve got to do some fundraisers but how do you get your name out for just a simple donation?
The purpose of this entry was to tell about the things we saw at the show, not to go on about how we need to raise so much money all the time. Although if we were able to raise the money, think about how nice it would be to have the big expenses for Dev not coming out of our own pocket all the time. Hmm.
But I should get back to writing about all the great stuff I came across at the show. I found an awesome company that does transportation and I now have a way to plan large family outings with my Mom, Brothers, Sister-in-Law and Nephew with my own family. Which is something that my kids have been wanting to do for a long time. Not to mention it just made planning birthday parties for the kids a bit better, since everytime we’ve wanted to plaln a birthday as some great spot we’ve always had troubles planning on getting all the kids there along with LB. Now I know there is a company that can transport LB along with up to 11 other folks. WooHoo. It’s not the party limo or anything fancy like that, but it does make planning things easier and that’s a lot. Of course when just my family is going someplace for the day, like Great Wolf Lodge or something, we can always book the Limo for a great trip.
I found clothing providers for folks in wheelchairs, which you think might not be that big of a deal but believe me folks sitting in wheel chairs have very different clothing needs from you and I.
I met a man that makes rain ponchos for folks in wheel chairs. The ponchos are made with a zipper in the back to make it comfortable for folks who have head rests, because without that zipper there would be a large hump behind their heads and it would pull on the neckline, making it uncomfortable. With this poncho Dev could walk in the rain and the cushions on his seat would not get wet!
There was another company that makes winter jackets, complete with a boot that fits over the legs and completely encloses them so that they don’t get drafts. They also have a zippers up the sleeves so that it’s much easier to get arms in, even when they are having a super tight day, which Dev has more than a few of.
I saw a lot of pretty neat stuff there, as well as met the guy from the new mobillity devices company that we’re going to be using to purchase a wheel chair from. When I told him my chief complaint about the wheel chair, meaning that LB kicks his feet and slides out all the time, he said that was easy to fix with a molded cushion to create a divet for his butt to rest in, and if that wasn’t enough he could mold a cusioned pommel to assist. I smiled and said that was what I wanted and that his therapist last year told me to just tie down Dev’s legs if he wouldn’t stop kicking. We told them that the problem is that we don’t know all the options available to us because nobody ever really showed them to us, the other vendor brought what she wanted to sell and that’s what we got to choose from.
They said that they believe in brining as much as they can because this is an important choice and you need to be informed. Now, they said that before we mentioned our problem with the previous vendor, so I’m hoping that they weren’t just blowing smoke up my butt.
Anyways, even if there wasn’t any great demonstrations on pediatric wheel chairs, I still came out with a ton of information and I feel really great about having gone to the show.
All in all it was a good day.