About our efforts to keep our profoundly disabled daughter a part of everything we do.

Tuesday, June 21, 2011

The Summer Rig

Like many children who are neurologically compromised, Bug has trouble keeping a steady temperature when it's hot out. We've come up with a system that allowed us to visit Disney World in 90+ degree June weather with no heat-related medical troubles. It's not the neatest thing, but take the idea and run with it, and if you come up with a way to do it that's more aesthetically pleasing, let me know, because I'll want to try it.

Bug uses a KidKart TLC wheelchair. The canopy it comes with is pretty much awful, and was constantly collapsing into her face, so we actually had the dowel-skeleton in there already. When summer came, the idea of putting in a ceiling fan hit us. It's just one of those battery operated ones from Walmart. The batteries last surprisingly long, especially when we remember to turn it off each time we duck in to an air conditioned building. Carry extra batteries with you to avoid paying rip-off tourist prices. Between the skeleton and the fancy gold twine and safety pin suspension network, it's very stable. Necessity is truly the mother of invention.



Our summer kit is actually pretty simple. Sunblock is a given, I'm afraid to keep it in the car in hot weather, so I carry it in our diaper bag. Our mister fan and our Frogg Togg stay in the van, along with the canopy. The Frogg Togg is awesome. It's pretty much a shammy, you wet it down and it keeps you very cool without getting your clothes wet. Ours cost $15 at a sporting goods store, and I absolutely recommend including it in your summer kit. Like I mentioned above, pop into air conditioned buildings often. It's easy to do at a theme park, but if you go to a beach or anything like that the mister fan will be your best friend. Hiking and outdoorsy stuff is still largely off limits to us, so I don't have much to offer in that regard. When we get a wheelchair with a suspension and find some relatively packed trails, I'll be more useful.

Well hello there!

Hello, my name is Tamsen, and my husband and I have 2 daughters. Here I'll call them Bug, 4, and Bean, 2. Bug has Lennox Gastaut Syndrome, which has caused her to be profoundly mentally and physically challenged. She uses a wheelchair, is feeding tube dependent, and is non-verbal. Early on, we determined that we'd try to be as much a "normal" family as possible, and that we'd include Bug in all of our activities and travels. I think we've been pretty successful at it, and want to share with other families like ours some ideas and items that have made it work for us. I don't expect my writings here to be ground-breaking, edge of your seat reading. I'm sort of looking at this as the manual I wish they'd given me the day Bug was born. I figure if I can help one new special family realize that this is not the end of the world, I'll be happy.