Today was KayTar's first seating clinic appointment! She has needed mobility support for a long time, but until now we've been making due with regular strollers. The most recent stroller she has used is the Combi Strolee that has a weight limit of 55 pounds (which is why we bought it!). However, it is meant for a chubby toddler, not a long and lanky 7 year old, so it is NOT a great fit for her. Josh is looking forward to putting that thing on the curb!! Her need for mobility support, especially in community situations (the grocery store, mall, the Rodeo, the park, ect), is not going anywhere so it was time to finally take the plunge and look into getting a REAL chair for her.
Initially, we were thinking of just getting her a larger medical stroller because I didn't think she would be self-propelling much with her fatigue issues. However, insurance only pays for a chair every 5 years or so, so this will have to last until she is TWELVE most likely. I couldn't quite imagine a twelve year old KayTar still in a stroller! I talked to a friend who has experience with her kids in a similar situation and she advised me to think about a regular, very lightweight wheelchair, because it had made a big difference for her daughter when going from stroller to wheelchair and she actually was capable of self-propelling for some distances. I talked to KayTar about it and showed her the two kinds of chairs and asked her what she would prefer and she was pretty stoked about being able to push herself! So we went into clinic today with that in mind.
It feels a little weird getting a chair for a kid who can walk, even though it IS medically-necessary. In fact, Josh said, "Can we get her a shirt that says 'METABOLIC MYOPATHY' on it so people don't think we're working the system when she hops out of her wheelchair to go run on the playground?" Haha! She just CAN'T keep using a toddler stroller (I don't know how we've made it work this long!), so this is just what comes next for her. I'm sure we get plenty of stink-eye now from strangers with our 7 year old crammed in a tiny stroller. In fact, there is a whole blog (which I refuse to link to) that consists of people posting pictures of kids that are too big for strollers that random people snap out in public! It isn't a totally uncommon thing for a mobile kid to need a chair for fatigue/stamina problems, but for the general public, it just isn't what you think of when you think of a person needing a wheelchair! I didn't know exactly what to expect from the seating clinic because of her semi-unique situation, but it was very simple and straightforward. I answered some informal questions about her condition, how we thought she would be utilizing the chair on a day to day basis, and what kind of chairs we had in mind. It was a pretty quick process, but I was glad I had done a little research beforehand, because it was quick and they expected me to have some knowledge about what we wanted going into the appointment.
KayTar got to test-drive a wheelchair and she LOVED it! We could hardly get her out of it when it was time to go. She did great with it; driving, turning, stopping...it was neat! She declared it the BEST DAY EVER! After some discussion, we settled on the TiLite Aero X. I had been looking at the TiLite YR before the appointment, but the rep said that it is a very small, non-growable chair so it would not be the best choice for her. The OT recommended getting a swing-away front so she can use both her feet and arms to propel herself when she wants to, because a lot of kids are quicker/better at that duel propelling. Between those two recommendations and my request for a very lightweight chair, we settled on the Aero X. KayTar picked the color...hot pink, of course! And she wanted light-up front casters like the demo wheelchair had. She was so pleased and said, "Now people won't think I'm a baby in a stroller!" If all goes well, she should have her chair in about 2 months. I'm super excited because she is so excited!!
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| You'll have to imagine the light-up casters for now. |
11 comments:
Now she'll be unstoppable! Love the pink!
I'm so glad that went well!
AWESOME! So happy for KayTar; I notice this chair seems to have everything an active kid's wheelchair should, too. The seat seems to be tilted back a bit, and do I see wheels at an angle? Very nice!
Has she already learned to do wheelies, or that'll come when her chair arrives? :-) It's actually not just a show-off trick, you need to be able to do wheelies to get up curbs.
She does have a bike helmet, right? Because you're probably going to want to put it on her when she starts learning how to do certain other handy wheelchair tricks. XD
(Nothing like a post on this lurker's area of interest to make for a randomly LONG comment!)
Corinn: Thanks for the comment! It is good to hear from someone who knows about this stuff that it seems to be a solid choice! The wheels will have a bit of a camber, but I'm not sure how much. She hasn't learned wheelies, just super basic movement stuff which she picked up very easily! We'll have to watch some how-to videos on YouTube for the fancy stuff! :) She outgrew hew bike helmet and is using her brother's old one currently, but I'm pretty sure she's going to need a hot pink one when the chair arrives!
wow. i think she'll rock it.
We TOTALLY need pictures of the light up wheels -that is such a cool thing! People don't really "get" the whole mobility thing. I remember that blog and it really ticked me off: you can't always see a disability. People have the same initial thoughts about feeding tubes - they think they are for people who can't eat. Nolan isn't actually supplementing feeds with his at the moment, but needs it for venting.
I love the color - adaptive equipment should be fun, not "medical beige!"
Hee! Doing wheelies is pretty easy, though it's more effort in some chairs than others. Basically, you quickly push the wheels forward at the same time you throw your weight back--not overly hard, of course!! I'm a total klutz and I have never fallen on my head, but while I was learning I was always cautious enough so failure just meant my front wheels only went up a little. You can, of course, also throw your weight forward again if you feel yourself tipping back too far. Obviously KayTar's chair will have handles, so if she does tip back too much, tucking her chin to her chest will keep her from hitting her head on the ground.
...um, try not to freak out at that idea? ^_^ If you're REALLY worried, someone can stand behind her chair to catch it/her as she's first learning. If her wheelchair has extra anti-tip wheels on the back, falling is even less of an issue--pretty sure the worst-case scenario there is then getting stuck with her front wheels in the air. ;-) But, she can walk and will never be totally alone, so no big deal.
Will she have a seatbelt? It's actually better if she doesn't, since she's mobile; I've used a wheelchair myself (for an engineering class in which we learned to build them... and because for some reason I think they're AWESOME), and I learned the hard way that seriously, seatbelts are not for people who don't need extra support! I managed to fall over going at a curb too fast (silly me, thinking my casters could handle it...) and discovered it's very, very hard to undo a seatbelt when you're in a wheelchair on its side! My only injury from that incident was scrapes on my hands, and anyway I probably should have been wearing gloves. Regular bike gloves should do if KayTar needs any. :-)
...geez, I don't know if I've EVER tested the comment length limit on Blogger before. XD I'm far from an expert, but if you can't reach anyone who is and have questions, let me know?
That is a super cool ride! KayTar will totally rock it.
What a cool chair! I love that she is so excited about it. And I cannot imagine anyone giving KayTar the stink eye EVER.
(Alejna directed me to your post) I think it says a lot that you thought about (briefly, and not so seriously perhaps) getting a shirt for her so people don't "judge" you. Why are people so quick to judge parents and the decisions they make? You don't know the back stories so don't pass any judgement. Why can't people obey this basic rule? *sigh*
I'm unlurking to share first chair experience. I found you back in the beginning while I was still in rehab and doing lots of short reading. I'm an adult permanently injured by way of drunk driver. My chair, which I do not use full time is an Aero Z. Love TiLite chairs. Don't trust DME's and 'seating experts'. Unless they use a chair themselves, they aren't an expert. SingleDad at disableddaughter.com has lots of tips on wheelchairs. Other than TiLite I'm not wild about what they recommended for you. I would go rigid chair, low front angle, no to fold up flip foot rests (they must teach seating experts to say that crap about using feet to propel - nope, notta, just slows you down). Natural Fit rims, removable anti-tippers, adjustable handles in the back (my 6'4" relatives will tell you how important that is for their comfort). Oh, and make sure to get a script for PT learn to wheelchair. Also, you can get blinkie tire tube caps for the back wheels.
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