Questions about Wheelchairs
JoJoGee
member
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?
TIA!
Re: Questions about Wheelchairs
We are going through this path now as it was brought up to me by our daycare provider (she has a teenage SN child who is wheelchair bound) and also our EI PT when I started asking them questions about IEPs (DS2 is 2.5yr). Because he will turn 3 in October, we have already started this process as I was basically told that "they aren't going to carry him in preschool". I hadn't thought of it so better to be told ahead of time. For functionality, DS2 4pt crawls, cruises a little, can sit on a stool or chair if feet touch the floor (cannot floor sit at all), and uses a walker a little bit but does not have the endurance to walk from a cafeteria to a classroom (at least at this point). Our wheelchair will be a manual wheelchair (a Quickie) and as long as people are on the ball (my doctor and the vendor) we should have his wheelchair in 3mos (so end of summer). Our wheelchair will be intended to use for distance type things vs getting around in a classroom for example. I can tell you that I was highly anxious prior to the wheelchair fitting because, lets face it, no parent expects their child to end up in a wheelchair and I didn't know how I would react. DS2 took to it IMMEDIATELY. Seriously took hands to the wheels and started moving the chair in a back and forth motion (I'm happy to email you quick videos from the wheelchair fitting - PM me your email addy if interested).
1. I don't think you are crazy to think about a wheelchair as it may be a very realistic thing for Lily. I don't think it is ever too young to think about it. The worst anyone can tell you if it is too early is that it may be too early to be thinking about it. :-) If she would need to be carried, then I would assume she would need something (going off of what I was basically told).
2. I do not know how young they do motorized wheelchairs. 2 or 3 may be too young. This is something you would want to ask the PT. I would hope that a preschool would be ok with pushing a wheelchair (vs carrying a child) but you may want to call the preschools you are interested in to verify. How are her arms? Would she be able to use a manual wheelchair?
3. DS2 will be 1-2mos shy of 3yr old when he gets his wheelchair.
4. You can verify with a vendor and maybe even the PT. What I was told during the wheelchair fitting is that insurance companies tend to want the FRAME to last 5yr but that they will replace pretty much everything else on an as needed basis (wheels I think, padding they sit on, etc). The wheelchair should be fitted so the child has some room to grow.
All in all, it is supposed to take 3mos'ish to get the wheelchair.
I am sorry I don't remember Lily's DX. But I can say my DS was very similar in terms of pacing of gross motor development. After age 2, he really took off. He went from rolling to get everywhere to army crawling. He learned to go from laying down to sitting up on his own. And now he is pulling up on furniture at 2.5 years.
While I totally get trying to mentally prepare and prepare your LO, I don't know that you need to start going down this path yet. (Again not sure on the DX, so I hope I am not overstepping here.) We have talked about a medical stroller or even an umbrella stroller to get DS to the bus at preschool (post a little further down the board) but they will work with your child where they are at and help them keep working for the next step toward independence.
Have you talked to your OT/PT.
When DS turned about 15 months they started putting him in a motorized wheelchair, taking him to the gym and letting him play with the controls.
However, I've semi asked them to take a step back from it because he started crawling at 20 months and is now trying to pull to stand.
Thank you for the input ladies. Toastie, we have talked with our PT and OT. In fact, our PT is arranging a meeting with the durable equipment representative next week to look over our options. I just wanted to know what it was like on this end (the parent's end)... and if I was crazy.
For the record, our PT doesn't think we are crazy, but she does admit that Lily is a bit on the young side. That's why I wanted to know everyone elses experience.
Flora, this is not your fault. I don't post much. Lily was a 26 week old preemie. Diagnosed conditions are more medical than anything (trach, G-tube, etc.). However, she does have Low Tone and all of her providers agree that she shows some signs of Cerebral Palsy (left hand dominate, hands are often in a fist, she has maintained a few infantile reflexes, and she lacks a few advance reflexes). She has an MRI scheduled in a couple weeks, and while I know an MRI alone can't diagnose Cerebral Palsy, we meet with a neurologist June 19. So, hopefully we will get our diagnosis then.
Max and Ruby, I'd love to see a video. Unfortunately, I'm so bump illiterate. I can't find you when I sear for friends, and I don't know how to PM you any other way.
Lily's arms are very week. She still cannot bare weight on her arms while on her tummy (she rolls by shifting the weight of her head). And, I worry that she doesn't have the coordination for a manual wheelchair. But, she may surprise me.
It sounds like you are going at everything exactly like I would-- gathering your info and asking around.
I did a lot of asking around, especially when my DS was about where your daughter is in terms of gross motor. You just want to be prepared for every possibility and have whatever they need ready to go. That was a scary time for me, because I felt like everything was a possibility and a question mark. I can say now that it is getting better. I feel like DS "wakes up" a little more each week. I never imagined a year ago that he would be cruising full-speed in his gait trainer at the mall, proudly carrying his bag from "Journeys Kids" shoe store to the car. This time last year he was using a stander and could not go from laying down to sitting on his own.
You are doing a great job, mama!
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