Stroller as Wheelchair stares and comments

[oynk]

My daughter is almost 8 and has a whole bunch of crazy health issues that we treat with varying degrees of success. The biggest issue when we are at WDW is that she has very little stamina and gets agonizing pains in her legs if she exerts herself too much. (She played on the playground for 15 minutes during recess the other day and was up in agony for 3 hours that night. At school she still has to have a 2 hour daily nap.)

We have solved this over the past few years with the "stroller as a wheelchair" GAC which has been wonderful. (She also uses her stroller this same way on school field trips and when we go shopping, so it's more than just a Disney thing). We are very careful not to abuse the privilege, and it is incredibly helpful.

The problem is, she is becoming more aware of the comments and stares of people around her. At school she just tells her friends she had back surgery (which she did), but strangers usually don't come right out and ask. It is even more complicated by the fact that she can get in and out of the stroller to walk around, and can even run and play for short periods of time (which is something we try to encourage). Quite honestly, we, as adults, have really had to develop some thick skin to ignore some of the nasty things we have heard, but it is really starting to bother her, too.

I've been thinking of putting some buttons on the stroller canopy to kinda explain things, but most of the ones I can find (or think of) end up sounding either rude or pitiful.

I'm wondering if any of you guys have any other ideas or anything that has worked for you. Thanks!

 

[jdb in AZ]

Sorry that people can be so rude. How about a button that says, "Royal rehab in progress."

 

[A Mickeyfan]

I would not feel the need to explain just because people are giving her glares.. I would decorate but not to "explain". I would decorate for fun, with buttons that say "smile" or "smile, someone is watching you" or Royal Carriage .... Princess in Training..... nothing that explains why she is in there.. that is non of their business..

 

[csarenz]

I would say just to not let it bother anyone, but I know that is much easier said than done, and a lot of us are in the same situation, or will be in that situation as our kids get older.

Unfortunately, there's nothing that can be done to stop some people from making comments, they just don't understand, or they don't want to.

Maybe you can let your daughter help so she can customize the stroller to what will make her feel the most special and proud of it.

But whatever the case, just have a great time with her.

 

[Earstou]

CafePress has lots of buttons and shirts for disabilities on their website. Some can be considered rude, some just support the condition. Do a search there for disability buttons or for your dd's disability.
I have a shirt I bought there that says Brain Surgery Survivor with a blue ribbon for Chiari Malformation.

 

[Lisa71]

My son is huge for his age (wears a size 8 and is only 4, almost 5) and has CP. He "looks" typical for a 7 or 8 year old..when he is delayed and younger. He has to have a stroller and we get all kind of looks. I am over it now and going to buy shirts that say "I have CP, what is your problem"..or my fave new find "I am raising a special needs child, what is your super power". Smile and wave, smile and wave.

 

[Sunnywho]

Is the stroller still comfortable? Maybe if the health issues are going to continue as she's 9, 10, 11, 12, she could benefit from a child-sized wheelchair instead? No idea how much that costs or if insurance would cover it.

 

[buffettgirl]

Is the stroller still comfortable? Maybe if the health issues are going to continue as she's 9, 10, 11, 12, she could benefit from a child-sized wheelchair instead? No idea how much that costs or if insurance would cover it.

or a rental perhaps? I know we all shouldn't care what other people do or say or look at, but I think realistically we all know that it's not fun to be on the receiving end, and it's hard for a child to get to that point. So perhaps if her stroller was more wheelchair looking then maybe the comments would be less and you also wouldn't feel like everyone was staring.

not that it's the best option, but one to consider . The medical looking larger strollers might solve that problem. They are strollers, but they clearly look a little different.

 

[oynk]

Is the stroller still comfortable? Maybe if the health issues are going to continue as she's 9, 10, 11, 12, she could benefit from a child-sized wheelchair instead? No idea how much that costs or if insurance would cover it.

She actually just broke 40 lbs this past year, so the stroller is still OK. Even so, she is getting fitted for a wheelchair next week. We are crossing our fingers that the insurance does approve it, because they are expensive!!! Either way, it won't be here in time for our next vacation.

The ones we are looking at, though, are still stroller like. (There are ones that are much more heavy duty, and expensive, but we don't need those types of features; however, the more basic models don't allow her to get comfortable and sleep if she needs to. Also, we are looking at portability for our family).

I have seen other kids using these types of stroller/wheelchairs (we're looking at Convaid ones) and while I don't think it takes much to tell they are wheelchairs, I have seen people that are given a hard time because they also look like strollers.

On a more positive note, we did spend some time on looking at various buttons (thanks to those who suggested it) and she got all excited about several pretty pink "disability" pins as well as one that said something about hidden disabilities.

 

[mistysue]

When DD was 7 we were at Disney and she rode in half of our double stroller. It seemed like the only time people really did the mean looking was first thing in the morning and at the end leaving and getting to the buses. We are lucky enough that she didn't care yet, but like the PP I wonder if stroller or wheelchair that looks medical might help.

While at Disney it seemed the only time people cared was when the stroller was an object competing for their space. Getting on the bus people looked at her size getting out of it and had a "really? Come on!" sort of expression. It made waiting for parades and fireworks less comfortable too, but general walking around there were actually a couple of adults who verbally referenced wishing they could relax in there (misting fan and all), which we took as a wishful joke rather than a jab.

 

[seashoreCM]

Everybody understands this statement, which can be put on a T-shirt or on the stroller.

"I can walk -- only to first base."

 

[KPeveler]

I always have problems with this comment from others. Something to mention to your daughter is this: those people are rude and there is NOTHING wrong with her or what she is doing. She is being safe and healthy. They are being rude and nosy, and have no manners.

Something else that may make her feel better - I am 27 and a full time wheelchair user. I have a $5000 custom made manual wheelchair that i very rarely leave and never to walk (in public). Those rude people, they STILL stare and make comments. I have even been accused of faking it for the "benefits." I think this proves that those people are going to be stupid and rude no matter the situation and they should not matter.

Here is what I do that is always "Disney approved" behavior and is appropriate, even for a child. When someone is staring or muttering comments about me - I look right at them and meet their eyes. Then I do one of two things, depending on my mood: I either frown at them to indicate my disapproval of their bad manners or I give them a big, cheerful, winning, smile and wave at them really big!

Once I am smiling and waving at them, they start to feel really uncomfortable and leave me alone. What is more, other people start to look at whoever was rude. I say nothing, even if they say something to me. I do not argue with them or anything - you cannot win an argument with a rude idiot, so why bother?

Something I have discovered is that the rude people know they are being rude but they do it anyway,

Anyway, I think making sure your daughter knows that they are rude and she is doing nothing wrong, and giving her the power to "give them a taste of their own medicine" may make her feel better

 

[Heva2015]

I'd agree with everyone else - most grown ups are probably jealous because she gets to lay down instead of walking at the end of a long day!

I have a similar issue - I can walk, very, very short distances and I'm super slow (I have full right leg paralysis, lymphoedema, foot drop as well as Addison's disease and a bunch of other things). People will always comment on something - I use an ECV, they assume it's because of my weight, they see my pouring salt onto my food (needed due to addison's) they comment that this will make me sick...I walk slow again it's my weight...

When I was younger (I became disabled at 17 due to cancer) I used to stick my tongue out at them but as I've got older I will just smile like the previous poster...my dp is a different matter all together - she normally fixes them with her hardest stare!

 

[Cheshire Figment]

I have told people something to the effect of: "I will give you my $3,000 ECV as a gift; however, you must also take all my disabilities which keep me from being as active as you". It generally will make them change their tune!

 

[buffettgirl]

I think any sort of invisible disability is just hard for people to grasp.

So what if you took the education route and got a bumper sticker or something to hang off her stroller which says "this is what a person with an invisible disability looks like"

 

[utterrandomness]

On a more positive note, we did spend some time on looking at various buttons (thanks to those who suggested it) and she got all excited about several pretty pink "disability" pins as well as one that said something about hidden disabilities.

Do you have a link for the one about hidden disabilities? I'm looking for something to pin to my backpack/my knee brace to make my own less visible disability more visible. I don't say invisible, because I do wear a brace most of the time, though it doesn't really make much difference in terms of people accepting my requests for accommodations.

 

[dclfun]

I would just stay away from a shirt or button that says "I have ___ disability or condition, what's your problem?" I find that statement/question incredibly rude and IMO it's not a good idea to meet rudeness with rudeness. I would not have a good opinion of someone who shared that kind of message even passively on printed material. Meanwhile I'm so sorry your dd has to endure stares and unkind comments. Indeed she is the one doing the right thing by preserving her stamina and staying safe while the others are the ones who feel the need to offer their unwanted opinion. I will never understand why people care what others do or how they get around, esp. on their own vacation!

 

[oynk]

Do you have a link for the one about hidden disabilities? I'm looking for something to pin to my backpack/my knee brace to make my own less visible disability more visible. I don't say invisible, because I do wear a brace most of the time, though it doesn't really make much difference in terms of people accepting my requests for accommodations.

Not sure how to post a link, but it was at Zazzle and it was colorful and said, "but you don't look sick."

They had a lot of other ones that I liked, but were a bit too "rude" for our purposes.

 

[lanejudy]

I might be concerned that putting signs or buttons on the stroller could call MORE attention to your daughter, rather than truly help "educate" those who will choose to be rude. We've managed to grow a fairly thick skin and not let the stares or comments bother us - I can see how they might not understand that a little girl who bounds out of the stroller to get in the ride car truly needs that stroller to preserve her stamina and make it more than an hour through the day. You know she needs it, she knows she needs it. I tell my DD that "other people don't always understand or know about your needs, just like you don't always know about them" and will continue into what we don't know about others (i.e., where they are from, how many in their family, did they drive a car or fly on an airplane, what did they eat for breakfast, etc.). She's been fairly accepting of that and stares or comments haven't bothered her much, and I ignore them. It's something we all have to deal with at different times in our lives, being the subject of a stare or comment, but unfortunately some of our kids face this early and often.

I just wanted to point out by trying to "counter-act" the rudeness of others, you may inadvertently call more attention to yourselves - and you'll have to decide whether that would be more troublesome or not.

Enjoy your vacation!

 

[lathamary]

I second the Zazzle recommendation. Love them.

I have a four year old with Autism, so I understand about the stares and comments. I haven't thought about it from my son's point of view before. He doesn't seem to care when people are gawking a him.

Sometimes i just want to hand out brochures to onlookers. I have a friend with a son with Autism who had little business cards printed up with information about her son and his Autism.

I hope your daughter can be comfortable with and proud of who she is. I am sure she is absolutely beautiful. it's really too bad that some people have to judge and stare when they see something out of the ordinary.