Wheelchair for Autistic son

[JohnnySharp2]

Hi all,

Does anyone use a wheelchair for their autistic child? Our son Joshua is perfectly mobile but he cannot walk long distances, his autism just prevents him from being able to....in the past we have taken an over-size stroller with us but now he has grown out of that.
For the 1st time next March we are taking a small (children's size) wheelchair with us.
We have had comments from CMs in the past "that child is too big for that stroller", "why isn't your son walking" etc
Hence I am wary about what will happen now, and have had words with a couple of cm's in the past (a classic case of autism awareness I feel).
We get a GAC pass but rarely use it, and we always let Joshua walk on to the rides and park the wheelchair outside, so we do encourage and insist he walks and stands patiently in line too - if there is only a small queue we do stand in the normal line.
So as you can see we try and treat him like any parents do with their child, I guess it's just a concern over 'peoples reaction' to seeing a perfectly mobile boy getting in and out of a wheelchair.

We only use it around the parks , occasionally at a shopping mall , as naturally we encourage Josh to walk as much as possible.

 

[madenon]

Johnny, first of all; that pic of Joshua is just cute!

Don't worry about the reactions. I know; easier said than done. But let's face it; it looks weird if someone uses a wc and gets out of it. People are having a difficult time dealing with those who stay in the chair, let alone those who can get out. In a weird way, I guess we have to be glad that those people just don't know better as it means they don't have to deal with it.

You'll probably get comments or stares. But anybody who's different will. Those of us using a wc permanently get them. Those of us with a not standard hairdo will get stares. Those of us in "weird clothes" will get them. It's the problem of those whispering, staring and talking that they don't understand, it isn't your problem.

Eventhough I'm not very pro, I know some of those who are just to worried and/or ashamed of having an invisable disability and using a wc etc. will try to make something visable. Like for instance wear a visible brace or large bandage on a limb. While I'm all for being who you are, be proud of that and not to teach a kid to need to "explain" themselves, I can see that there are some situations in which it might be better. If Joshua notices the stares and comments and it is something he can't deal with to such an extend it would ruin his whole day and/or really damage his self-image, I would through all those principles out of the windowd and make his disability visable so at least there might be some more understanding.

For you as parents; I know it must hurt like hell. Try to involve yourself with Joshua as much as possible. If you distract yourself, you are likely to notice less of the stares and whispers. It's a technique enough parents use. Or if you're in line and there's a family with kid infront or behind you; start a conversation. Kids are lovely and open. If they've seen the wc, changes are they'll ask about it. This gives you a great oppertunity to talk about it (which can function as a warning to those around; don't judge a book on it's cover), it helps you relax and those kids can react so sweet to this things that they'll just make your day.

And rather harsh but ment well; you used the phrase "a perfectly mobily boy getting in and out of a wheelchair". While it might look like he's perfectly mobile, he isn't. I know it's a hard thing to hear as a parent, but if he were you didn't need to use the wc. So even if it comes up, just mention the fact that he has limited mobilty. No more, no less.

 

[Mish]

My son has a hip problem and we have the McClaren Stroller/wheel chair that we always take with us because a lot of walking causes him sever hip pain at night. We have never had a problem at Disney but I do feel like people are saying to themselves what is he doing in that stroller. At home is a different story I was at a street fair and someone looked at him and said isn't he a little big to be wheeled around. I just looked at them and politely said he has a hip problem and ended it at that. I have learned I don't really care anymore what people think.

 

[BeckyScott]

Have you considered the "kiss-off cards"?

(cough cough, they go by several names)

Let me try to do a link-
Click Here

Gosh, that's long, I hope it works!

You can make your own and modify the words. Since they are "silent" your DS won't have to hear you defending him (or embarrassing him). And they have a certain "shut the heck up" quality. While it won't eliminate everyone's stares, if anyone gets close enough to you or actually says something, you can keep a few in your pocket to whip out quickly.

edited to add: Okay, link isn't working for me. Ebay, search "autism awareness cards".

 

[sadeeyore]

Our DS is 11, with autism, learning disability, and ADHD. We usually use a WDW stroller, but have decided for our next visit we are thinking of bringing a wheelchair.
DS is very mobile, but also likes his own space. He hasn't used a stroller at home since he was 3. I think it's due to the heat in Florida, but he refuses to walk a long distance.
Also really want it for the airport, as last time we carried DS through security/customs. It was a nightmare.
I am worried as well about peoples comments.

 

[JohnnySharp2]

Thanks for the responses , appreciated.

I am sure people look at us, maybe comment on us, but at the end of the day we are on holiday to have a good time and we ensure Joshua does.

There are many occasions I have stared at someone who was staring at us - whether that will happen again I do not know, hopefully we will not have any comments made by CMs again.

At the end of the day, we look after our son's needs and know what's best for him - to be honest I am not worried by what people think or say anymore, the only thing I would add is that they better not let me hear them

Thanks again there is some good advice on this thread.

 

[pcparamedics01]

Hi all,

Does anyone use a wheelchair for their autistic child? Our son Joshua is perfectly mobile but he cannot walk long distances, his autism just prevents him from being able to....in the past we have taken an over-size stroller with us but now he has grown out of that.
For the 1st time next March we are taking a small (children's size) wheelchair with us.
We have had comments from CMs in the past "that child is too big for that stroller", "why isn't your son walking" etc
Hence I am wary about what will happen now, and have had words with a couple of cm's in the past (a classic case of autism awareness I feel).
We get a GAC pass but rarely use it, and we always let Joshua walk on to the rides and park the wheelchair outside, so we do encourage and insist he walks and stands patiently in line too - if there is only a small queue we do stand in the normal line.
So as you can see we try and treat him like any parents do with their child, I guess it's just a concern over 'peoples reaction' to seeing a perfectly mobile boy getting in and out of a wheelchair.

We only use it around the parks , occasionally at a shopping mall , as naturally we encourage Josh to walk as much as possible.

If you need to use it do so! Whatever makes him more comfortable! I have learned a lot throughout the years and I really do not care what people think. I am the type of person that would rebuttal anyone that gave me a hard time and who dared to make a comment. I have a HFA son and we all know it is hard enough to make our vacation a happy one without losers making comments about something they know nothing about. Sometimes I get real satisifaction about putting people in their place! I would never question anyone or give stares. daggers etc. even before I ever knew my child was Autistic. It is rude! That is why it bothers me sooo much when they try to do it to me. It is mainly ignorance! Do not worry you will be fine!!!! Use chair and Joshua and your family will have a magical experience. That is what it is all about!

 

[ORMom2Four]

Our son is almost 5 and is developmentally delayed, hyperactive, super sensitive to any outside stimulation, and has a benign brain tumor that is affecting his behavior & gait. I can't take him shopping, let alone to D-land without a stroller. Definitely take a stroller or rent one if you need it!

We are looking for new wheelchair/stroller for our son, sine he does not fit in regular strollers. He's at the 95% for height & weight

Michelle, do you have the Maclaren Major? How do you like it? That's the one we are looking at.

Jennifer

mom to Ashley, 15
Jacob, 13
Joe, 5 in October
and Jace, 2

 

[Mish]

Our son is almost 5 and is developmentally delayed, hyperactive, super sensitive to any outside stimulation, and has a benign brain tumor that is affecting his behavior & gait. I can't take him shopping, let alone to D-land without a stroller. Definitely take a stroller or rent one if you need it!

We are looking for new wheelchair/stroller for our son, sine he does not fit in regular strollers. He's at the 95% for height & weight

Michelle, do you have the Maclaren Major? How do you like it? That's the one we are looking at.

Jennifer

mom to Ashley, 15
Jacob, 13
Joe, 5 in October
and Jace, 2

Jennifer, Yes that is the one that we have. I have had it for 3 years now and am very happy with it. We were fortunate enough that our health insurance paid for it. My son is 80 pounds and it hold him just fine. It folds easily the only thing I find annoying is the foot rest you have to take it off to fold it.

 

[tmli]

I have done this for my DS (now 11) and had many of the same concerns as you. Most people were very kind and it was a god send. He doesn't need it anymore (we are here right now and he does great now) but honestly you will be glad you did it.

 

[JohnnySharp2]

Thanks for all the responses and kind words.

 

[WildGrits]

We have had comments from CMs in the past "that child is too big for that stroller", "why isn't your son walking" etc
.

I cannot imagine the gall it takes for someone to comment in this way. I am totally flabbergasted.

I know a lot of folks use the above mention cards. I hear people like them because they are silent. Personally I would never use them. If you hand a card out to someone who comments on your childs behavior, should you wait for one in return from said person on their obvious disabilties of social gracies?

People who comment on your child, or other family member, are the same people who stare at a women brave enough to go out in public with out their scarf or turbin. As a rule it is not a fashion statement. It's Cancer. But they will still stare with their mouth a gape (catching flies).

You don't really think you owe these people an reason for what ever behavior your child exhibits do you? I sure don't.

 

[SelfEmployedDebtFree]

It's the problem of those whispering, staring and talking that they don't understand, it isn't your problem.

We have a similar problem. My son (9) is BIG for his age. He has low muscletone. He's also autistic. No matter how slow we walk, he walks slower. If we walk REALLY slow, he just stops and sits on a bench. You cant win. We considered Heelys, but they are outlawed (no special allowance permitted either... we checked) We cant use a stroller (he's too big) and when we DO use a wheel chair, a number of things happen:
1) When we get him a wheelchair he wants to steer it as well, and hes DEADLY!!!
2) He stores up energy, and JUMPS out of the wheelchair and RUNS to the ride. That REALLY gets bad looks, and I understand why.
3) He doesnt lose any weight, and thats kinda an "alterior motive" (sp?) of our trips.

So we FINALLY... after about 20 trips... figured out something that works SOME of the time. We "casually mention" a ride that he likes thats CLOSE TO where we are, and when he wants to get to it, he all but DRAGS US to that ride. Otherwise we'd NEVER get there!!!

Sometimes I get real satisifaction about putting people in their place!

I'm with you there! I often say "God knew to give the autistic child to the big, cocky, mean as heck bald man with an attitude". Of course I wasnt mean and cocky till I had to start defending him so much. It grows on you after a while. But I have realized sometimes a friendly approach makes them more angry.
I was in the grocery store and (another) big cocky man confronts me, mad as fire, face all red, because my son is "spitting". He drools occasionally. Nothing serious; a drop or two once in a while, especially when he's mad, and he was mad at us at the time. This guy sees my son yelling at us, and the drool, and decides to "straighten me out" about it. So he tells me how my son is spitting and "hanging over the meat counter" (he hangs on the rails... big deal! the meat is sealed, and my son wasnt drooling then; he only drools a few drops when he screams, and he wasnt screaming at the meat counter). So I just looked at the guy and said. "Oh. OK." and then continued my conversation with my wife as if I didnt care and wasnt listening. he REALLY got mad then and blared out something else and I just ignored him and kept walking as if he didnt exist. My wife said "Why didnt you get in his face like you usually do" I said "Ignoring him made him much more mad, and it was more fun too! besides, that guy was like 8 feet tall!!! I might be cocky, but I'm not stupid!"

 

[madenon]

We have a similar problem. My son (9) is BIG for his age. He has low muscletone. He's also autistic. No matter how slow we walk, he walks slower. If we walk REALLY slow, he just stops and sits on a bench. You cant win. We considered Heelys, but they are outlawed (no special allowance permitted either... we checked) We cant use a stroller (he's too big) and when we DO use a wheel chair, a number of things happen:
1) When we get him a wheelchair he wants to steer it as well, and hes DEADLY!!!
2) He stores up energy, and JUMPS out of the wheelchair and RUNS to the ride. That REALLY gets bad looks, and I understand why.
3) He doesnt lose any weight, and thats kinda an "alterior motive" (sp?) of our trips.

So we FINALLY... after about 20 trips... figured out something that works SOME of the time. We "casually mention" a ride that he likes thats CLOSE TO where we are, and when he wants to get to it, he all but DRAGS US to that ride. Otherwise we'd NEVER get there!!!

Did you know that there are aids out there that'll let him walk but do give some extra support? It is meant mostly for those who could walk if they're supported a bit, but maybe it could help him speed it up to a bit more normall speed. I don't know what they're called in english, if I translate it directly, we call them a "walkingbike". They can look like this (cool in the eyes of many kids

http://www.saskindustries.nl/P1010036.JPG

http://www.saskindustries.nl/P1010066.JPG

EDIT: click the links, turns out the pics are a bit too large if I put them in the posting.

These might look rather lame in the eyes of a kid, there are much nicer and cooler ones out there, these were just the first I found a pic of. Overhere they are aknowlegded as a official aid and therefor you can bring them along with you on places wheelies aren't allowed at. The principal is very simple; take a bike minus the peddels (right word??). You walk but because of the seat supporting you, it is very joint-friendly and takes up a lot less energy.
Maybe you could try out with an old bike, take off the peddels and see if he likes it and becomes a bit less slow while walking. Doesn't have to cost a thing, so no loss if it isn't something that fits/helps him.

 

[Christine43]

My autistic 10 yr. old is very slow too and I am seriously considering using a wheelchair this year even if it means he only uses it half the time. I think it will makes things easier for him in the MK and Epcot particularly.

 

[SelfEmployedDebtFree]

I'm going to try it without anything special this trip. He has been very active in P.E. since the last trip, and he is dedicated to losing weight. He has actually made some references to wanting to walk more at WDW this trip so he can lose weight. He's actually losing weight, and checking his weight regularly, and were encouraging it. He is actually walking a lot locally as well, and we have made it a habit to always park at the furthest-most spot in every parking lot just so we have to walk. I think he will be OK this trip. The bike is a neat idea though.