Not Trach Related: Wheelchairs

[JoJoGee]

Lily is nearly a year and a half now. She is slowly making gains in her motor development, but it seems like we are lightyears away from any significant milestone. Lily can sit tripod for 10 seconds, and roll from her belly to her back, that's it. She still cannot roll back to belly, cannot sit unsupported, and we are no where near crawling, standing or walking. I am certain that we are headed to the special needs preschool in a year and a half. And, for some reason, it is stuck in my head that students would need to be somewhat independent before going to preschool. For Lily, I am certain that means she will need a wheelchair. I just can't imagine they would have a child in any school setting who had to be carried everywhere.

Since it can take up to 6 months to get a wheel chair, and since I would like Lily to be comfortable with a wheel chair before going into school, we are beginning to think about wheelchairs now. So, here are my questions...

1) Am I crazy to think about getting a wheelchair now? Is Lily still too young to think about this? Can she go to the special needs preschool without one? (I plan on asking our therapist through EI these questions as well).

2) Do they make motorized wheelchairs for children who are 2-3? Lily is cognitively on par (if not advance) so I think she would pick up the idea of a motorized wheelchair pretty quick. And, it would be really great if she could have some independence in terms of her mobility.

3) What age was your child when s/he got her/his wheelchair?

4) Our PT told us that insurance companies really want wheelchairs to be used for at least 5 years before getting another one. Anything else we should know?

Thanks!

[kharmasmama]

It never hurts to think ahead! I have Kharma enrolled in three different preschools for fall, all depending on what happens with her airway this summer One thing that I have learned in the four years I have been a trach parent is to never underestimate your child's abilities. Plan for the worst, but hope for the best. I always have a backup plan, so pursuing a wheelchair now could save your tail in a year. And if Lily doesn't need it, then what a great surprise!

[Shauna]

Charlie got her medical stroller at just over a year old, so no, I don't thing your child is too young. Like the pp said, go ahead and get it, if you don't end up needing it, then great! But if she does need it, then the earlier the better.

[kadiera]

Have you seen these: http://myzipzac.com/ - they're manual chairs, so I'm not sure how well that would work for you, but still very cool

I *have* seen research that children as young as 9 months can learn to drive a motorized chair.

The other thing to consider is to make sure whatever you get will grow with her. Insurance companies only pay for them every so many years, and it seems to me to be a long time for little kids.

I know Ainsley's mom has had a couple threads here in the last year about features and what to look for - you might try searching to find them.

[IzzyB]

I would talk to your therapist to see what they think. My son is 17 months old and about the same way as your child. Our therapist doesn't see any issues with him crawling and walking. He is very behind, but that doesn't mean by 3 he won't be walking. Our LOs have had a lot of things hold them back and that is hard on them.

If your therapist thinks it is a good idea then I would pursue it. Never too early to start on these things. Your therapist should also be able to help you to start your search. At least I know mine our knowledgeable of this stuff.

[JoJoGee]

Thanks everyone! We have talked with our PT about it. She admits that Lily is on the younger side, but doesn't think we're crazy for looking at wheelchairs. She is actually calling in the "wheelchair guy" for our next visit.

I've thought about a medical stroller, but more than anything I want Lily to have some independence with her mobility. So, I'm really leaning towards a wheelchair. I love the ZipZac, thank you for giving me the link! Unfortunately, I don't think Lily doesn't have the arm or upper body strength to operate one of those. She still struggles to keep her head upright in her bumbo.

More than anything, I am just looking for some first hand experience. I know I didn't really pose the right questions. That's what happens when my mind juggles too many questions at once.

[Ainsley's Mom]

Originally Posted by JoJoGee

Thanks everyone! We have talked with our PT about it. She admits that Lily is on the younger side, but doesn't think we're crazy for looking at wheelchairs. She is actually calling in the "wheelchair guy" for our next visit.

I've thought about a medical stroller, but more than anything I want Lily to have some independence with her mobility. So, I'm really leaning towards a wheelchair. I love the ZipZac, thank you for giving me the link! Unfortunately, I don't think Lily doesn't have the arm or upper body strength to operate one of those. She still struggles to keep her head upright in her bumbo.

More than anything, I am just looking for some first hand experience. I know I didn't really pose the right questions. That's what happens when my mind juggles too many questions at once.

We don't have a ton of experience with motorized chairs. But we did consider them. These are the downsides. They are heavy. If you don't have a wheelchair lift on your vehicle it is unlikely you'll transport it anywhere. Because they are heavy a young child can do some serious damage if they run into walls furniture or people. If you are out in public it could be hard to keep the child from "running off" or into people.

We had Ainsley test drive one during the chair evaluation. She did better with it than I thought, but ultimately for us we needed something to transport her in and a stroller style made the most sense. She's big, and outgrew standard strollers. If you already have bought a manual chair and then need a push style chair you might have a hard time getting funding. But if the child's needs change then you'd have better luck getting a manual chair when they are ready for one even if you already have a push style. Whatever you do make sure there is growth potential. Not all chairs are adjustable.

It sounds like your daughter has significant delays. I encourage you to really think this through because you don't want to be stuck for years with a chair you don't like. You might start looking but give her another 6 months to see what she is capable of. Kids that need more positioning support need more complex chairs with more features. It's best to know all the stuff you'll need and order it at the same time as the chair because the "accessories" (head or lateral supports etc) can be expensive to buy afterward.

The other thing I learned doing my research is that there is no such thing as a perfect chair. Often you really need more than one to fill all your needs. As a mom of three I really wanted a "lightweight" stroller style chair so that I could take Ainsley places. She didn't have the strength to push herself everywhere we go (what kid does?) and I didn't have a lift and I knew a power chair would get limited use. We bought the Convaid Rodeo. For our needs it is perfect. EXCEPT that I wish it reclined for diaper changes (very difficult in public with a large kid) and a flip up foot rest for transfers. They made BOTH those changes a month after we got our chair. The design of the Rodeo is tall and thin so it might not work well for heavier children but I love ours. As far as chairs go it's considered "light-weight" but it's heavy and bulky to lift in and out of the car. But there's no getting around that. So if a stroller is still working then you might want to wait a bit.

Good luck whatever you decide! Here's a link to a place that has good detailed info on lots of chairs. http://www.adaptivemall.com/

[JoJoGee]

Thanks Ainsley's Mom!
We met with a wheel chair consultant today. We learned a lot. We have decided to wait 6 - 9 months and see how Lily's skills develop. Then, we plan to order a wheelchair. That should give enough time to get her wheelchair, and for her to get used to it before school starts. I am hoping she will be ready for a manual, self-propelled wheel chair... we'll see where it goes.