Last weekend I went to Los Angeles to attend the Abilities Expo, or as I call it, the weekend-long infomercial, which is fine if you’re in the mood for an infomercial, which I am. Well, not in the mood so much as in the market.
It was a bit overwhelming, but I got some good info. I saw the folks from Freedom Concepts with their bikes, it was good to see them — they were quite busy! There were at least 2 wheelchair van dealers–much of the place was filled with accessible vehicles. The 1st guy I talked to was real nice, and happens to be less than 5 miles from our house!! The other guy was nice too, but he’s in LA or San Diego, so there’s really no point to talk more to him when we have a dealer within spittin’ distance! I got good info from both of them, and from the talk on vans that I saw. So I’m narrowing down what we want. Just gotta figure out how we’re going to pay for it!
Another interesting talk I went to was about special needs trusts. When an audience member asked what was the biggest error made with special needs trusts, she said, “people set up a trust and then don’t fund it.” Guilty. I set up a trust 3 years ago and still haven’t changed all the beneficiaries on my accounts to the trust. I tried one day, but the forms didn’t make any sense to me, so I need to go pay my lawyer a visit this week so she can help me do it right. The woman, who was from Mass Mutual Financial Group, also said they’ll review your trust to make sure it’s in proper order, because that’s what they do–and they do it for free! (They just hope you like them and buy things from them.) I just may take her up on that, since my lawyer doesn’t specialize in special needs trusts, but she consulted with someone who does, so it’s probably in order, but better to be safe than sorry!
I got several brochures on wheelchairs, asked a few questions, but I’m at the point that I don’t even know what to ask, so at least we have the literature to go over with the physical therapist. Since it will probably take a year to get it purchased, we may as well start now. And I probably need to get the chair before the van, or at least know what chair we’re getting.
There wasn’t as much on aug comm devices as I thought, but I did get some literature and a name of someone to talk to in Phoenix. Then I talked to a guy, I think his name is RJ Reynolds, at least that’s the name of his company. He is very good with the kids, and explained a few things that totally made sense to me. The 1st thing he starts out with is a switch (button) connected to a vibrating mouse. They make the cause-effect connection fairly quickly with that, even those with emerging skills, like Maria. Then you go to music (push the button, get music), then you go to some software that he builds. I don’t know how much the software it, and it looks a bit crude, but I observed some fairly low functioning kids interact with it fairly quickly. He sets it up so if you don’t push the button for a certain amount of time, it calls your name “Hey Maria”, and that seemed to work to some degree. He wasn’t selling much there, but I did manage to buy a switch and the vibrating mouse he was using (the only one he had, but it was near the end of the Expo and he said I could buy it), and got a CD with his catalog so I’ll look into that. so perhaps we can work on communication afterall!
The other thing I bought was a small blanket-like thing filled with something heavy, like beans, and herbs. They said the herbs can clear your lungs, so it might help Maria next fall since she gets so congested in the fall/winter, and the weight might help her organize–I’ve talked with her OT or PT about that before. It wasn’t too expensive, so if it doesn’t work, at least the house will smell nice and I’m not out that much. They told me one older woman bought a bunch of them (the slippers actually, but the herbs are almost the same in the blanket and the slippers) for all her elderly friends who tend to get pneumonia, and it seems to be working!
The one fun thing I did was go to a concert at the Getty Museum –beautiful place across from the Santa Monica Pier. One of my friends is in LA and she came to get me. the band is Sones de Mexico. Each of them plays at least 10 instruments it seems. The entire stage was full of stringed instruments and drums and even a donkey jawbone–no kidding–they played it for at least 2 songs! We were in the 3rd row. It was fun! Maria would have loved it! So i got her their newly released CD which is for kids.
So, now we just have to get those pesky seizures under control…..She didn’t have any yesterday, so perhaps we’re on the downswing (upswing?). I think I’m going to give her teachers a video recorder so they can tape her seizures. Thursday they said she had one where she was jerking a little bit–which is new. Friday they said she had about 10 – 15, mostly short ones. I’d really like to see what they’re seeing and try to decide if we can do anything about it….