dd doesnt want to use wheelchair

[sl_underwood]

How do I convince my dd that using a wheelchair or stroller as a wheelchair is what she needs to do? She is 11 and though she is healthy enough for a trip and her counts are up, she is still recovering from 2 years of hospital stays, 2 rounds of chemo (last round ended in September) and still taking weekly infusion treatments. She is so worried that someone will say something and that people will think she is a dork if she is in a stroller or that she is a fake if she is in a wheelchair. She really just wants to be like everyone else. She is in that stage where fitting in is important and other peoples questions and comments really hurt her. Any ideas on how to deal with this one? I am afraid she will just keep going and overdo. Also, can I take all of her meds on the airplane with me? And do I need a doc note to do so? Thanks

 

[Cheshire Figment]

Hi, and to disABILITIES!

Please ask her the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

You can take all of her medications on the plane with you. Do not even think of checking them, include them with carryon luggage. Anything medical does not count against airline baggage limits.

There are a few other threads in this forum (on Page 1) about traveling with medications.

 

[sl_underwood]

Thanks. I know its better for her, she just has such a fear of what others will think. She didnt used to so I think its somewhat of an age thing but it may also come from months of wearing a mask and oxygen out and having rude strangers come up to her and ask all sorts of intrusive questions and children thinking she was a wierdo and teens making fun of her when they saw her. I have already planned to rent a double stroller and get the GAC to use the stroller as a wheelchair for my ASD son. They can both fit in a stroller together. I just really want her to understand that her health is far more important than what others think, not sure how to get that through to her. Maybe hearing positive stories of other kids in similar situations would help.

 

[OneLittleSpark]

It can be hard thinking that people are staring, especially when you're at that difficult age (I used to hate it when people referred to it as a 'difficult age' and now I'm doing it . Always makes it seem as if all your problems are due to your age, not any legitimate reasons or concerns. *hits self on forehead*). Also, I can completely relate to her not wanting to look sick, or to remind herself of her illness by using a chair. However, it will make her holiday a lot easier and a lot more fun.

I honestly don't think people would make negative comments about a child in a wheelchair. If they do, you should give her full permission to run them over in the chair!

Might the idea of decorating the chair up make her warm to it a little? Different people will feel differently about this, but I love decorating my chair up, and when I went to Disney in full decor, all I got was positive comments. It can make it feel more like it's 'yours' as well; by putting your stamp on it, you're claiming it and making it an expression of your personality.

Another reason some people object to using a wheelchair is that they feel they'll be reliant on someone else to take them everywhere. If you reassured her that she could push her chair, or get up and walk, when she felt strong enough to do so, this might ease some worries. Obviously, her arm muscles aren't trained enough for her to push all the way around the park, but she could go off on her own to explore a shop, go through a ride queue or go to the food court at the resort to pick up a drink.

I know that some people find the analogy of glasses helpful. Some people have some problems with their vision; to compensate for these they use glasses. Other people have problems with mobility or stamina; to compensate for this, they use a mobility aid. There is not really any stigma attached to wearing glasses, so why should there be for a wheelchair?

If your daughter wants to talk to someone who's been through this 'adjustment' feel free to get her to PM me, and I'd be happy to chat to her.

Good luck and have a wonderful trip!

 

[ireland_nicole]

Unless the rules have changed since the last time I flew, there should be no problem w/ meds. Keep them in the original bottles, and in carry on luggage(you don't want them getting lost). As far as the w/c situation goes, I can totally see why she's self conscious. People have been looking at her, and she probably hasn't been looking her absolute best (nobody does when they're dealing w/ chemo, etc.) Of course she feels uncomfortable. So here are my version of a few strategies:

1. mean mom. You don't have to use a w/c. I don't mind staying in the hotel room w/ you. But health and safety are non negotiables. No w/c, no Disney. (My kids are used to some version of this, I use it a lot.)

2. Offer her a choice of w/c or stroller.

3. Sympathize. I understand that you don't want to look like a dork. But hey, you don't know any of these people anyway-and you sure don't look more like a dork that that guy over there wearing blue socks w/ sandals and a Pluto hat.

4. Assertive. If someone stares, ask them if they'd like to take a picture so that they can stare as long as they like. If they still don't get the message, run 'em over.

5. Reasonable. O.K., how about we try it your way but make a deal that if you're too tired to enjoy yourself, we try the w/c?

Hopefully one of these strategies works for you. Ya'll need a vacation, and the w/c or stroller is going to allow her to enjoy it a lot more. Have an awesome trip!

 

[winniedapooh]

Tell your daughter from me that if I can do it she can do it...as a woman of size I was vehemently opposed to using a wheelchair. I have a sister that has been in one for many years and thinking my mnay knee surgeries did not compare to her. I don't want people to look at me like some big fat lady in a chair. I had just had knee surgery 13 days before we went last September when Chesire Figment posted to me much as he/she has done for other people. That psot spoke to me and they are right, do it. Tell her from me, it will make her trip more enjoyable and who cares what other people think---sweetie as long as you care about yourself that is all that matters! She will be too busy having a good time to let small minded people ruin her trip

 

[OneLittleSpark]

Also, she might feel happier if she knew she wasn't 'confined' (I know, I hate that word too) to the wheelchair. If she feels up to it, you can use the chair to get to one land or area, then park it and let her walk about and explore it on foot. Then, when you're ready to move on, she can hop back in and you can go on to the next place. If she's flagging a bit, I would recommend she uses the chair in lines, as even if it's posted as 10 minutes, all it takes in a minor break-down to make that line last half an hour (or more) .

Might a stick help her get around when she's not in the chair? If it might, this could give her a little extra help, and maybe allow her to do a bit more walking. I don't recommend it as a 'replacement' to the chair, but as an extra aid. If she's self conscious about using a cane, you could get her a hiking pole, as these look a lot less 'medical'.

Another thing I forgot to put in the last post, you might want to talk to her about the distances involved in Disney. I've heard varying figures, but the general estimate is that people clock up between 6 and 10 miles a day at the World. One thing that has worked for some people here is this: pick a place about 3 miles from your house, that she will know well. Ask her if she could walk all the way there. If she says yes, ask her if she could walk there and back. Then ask if she could do that every day for the length of your trip. She'll probably look at you like you're mad!

Good luck, and I hope she comes around to the idea. As I said before, I'd be more than happy to chat with her about her concerns, if she wants to.

 

[sl_underwood]

That is such a nice offer, I will let her know. She is now swimming each day again (she was on swim team before she got sick and was one of their best) Thankfully her coach is allowing her to swim with the group even though she swims much slower now and has to have a lifeguard spotter with her. They have been very accomodating. She is swimming for an hour 3 days a week and walking about a mile the other two as part of her recovery. I think that she is forgetting how big Disney World is. She thinks that since she can walk a mile she can manage disney world. I will try asking her if she wants to walk to the library (its about 5 miles away) Maybe then she will see the distance thing. I know she would be more comfortable (not feel as weird to be in the stroller) but I am not sure a stroller would be comfortable. She is only about 80 lbs at most and about 4 1/2 feet tall. I will make sure to mention she will never be around these people again and that if anyone is rude she has every right to dish it right back. When she was on oxygen and wearing a mask her sis made her a tshirt that said I wear this mask because I am to beautiful for your eyes and the oxygen is because I dont want to breathe the same air as morons. Sadly this was after people of all ages came up to her asking what was wrong with her or teenagers snickered and pointed. It amazes me how rude some people can be but its these actions that have left my once confident dd insecure. I am hoping as she gets stronger she can compete again, swimming is her one true love, well that and cats.

 

[ireland_nicole]

Don't forget one of my all time fave comebacks. "You don't look disabled..." Comeback- "Well, you don't look stupid, but I guess looks can be deceiving" Maybe not the absolute nicest thing to say, but if someone is going to be that rude/idiotic, they probably deserve the reality check anyway. Nicole Some of my best are unfortunately not going to apply for you because they are autism/young child specific. But feel free to use your creativity-let your daughter help, maybe in a fun way role play w/ her, if nothing else it might give ya'll a chance to laugh together at what you would like to say but better manners might prevent -heehee

 

[henrylovespooh]

What kind of medicines will you need to take with you on the airplane? I can help you with figuring out how to transport them.

 

[sl_underwood]

She takes prednizone and cyclosporin. She may be off the prednizone before our trip, they are slowly weaning her off it. We also will need to bring our arnica pills and gel (these are herbal- no prescription)

 

[sl_underwood]

Thanks Spark for answering dd's questions. She said she will think about what you said. I think that she really needed to hear about this from a younger persons perspective.

 

[DevilDuckie]

In elementary school and junior high one of my very close friends had spina bifida and used a chair. She had a strong fashion sense and a head turning flair for style. Looking back I am pretty sure that part of that was coping with people who stared- although she had the good fortune to grow up in a very disability-friendly community. People stared at her because she was wearing an amazing red dress or a snazzy hat. She *expected* people to look at her- she looked good!

Perhaps your DD would be more comfortable if she was being intentionally stare-worthy. A dramatic makeover involving glitter and fluffy hair ornaments and exotic eye make up might just do the trick.

"Of course everyone is looking at you, honey. That's the whole point of being glamorous."

 

[SueM in MN]

She takes prednizone and cyclosporin. She may be off the prednizone before our trip, they are slowly weaning her off it. We also will need to bring our arnica pills and gel (these are herbal- no prescription)

Medications are not a problem. It's easiest if they are in the original bottles, but they don't have to be - just need to be identifiable. You want to put them all into your carry on bag; don't put any in checked baggage.
Here's a link to the Transportation Safety Administration webpage about travel for people with special needs.
About 2/3 of the way down the page, there is a link to a page about medication..

 

[OneLittleSpark]

Thanks Spark for answering dd's questions. She said she will think about what you said. I think that she really needed to hear about this from a younger persons perspective.

I'm just glad I could help a bit! It's not an easy decision to make, especially if you've experienced the unkindness of strangers, as she has. However, the main thing is to make sure she enjoys her trip, and doesn't burn herself out. As I said in the message, if she wants to talk more, I'm here and happy to chat. I've always been able to talk the hind legs off a donkey, so don't mind in the slightest!

 

[bopper]

It may be helpful is she has the option to use it when she wants, and not all the time. Sometimes just feeling you have the choice helps out.

Just tell her that you don't want her to miss out on fun because she is tired from walking. You would rather her save her energy for fun, but that it is up to her.

 

[bbyee]

I grew up disabled (always use a wheelchair) and something I can remember from being her age is that I was self-conscious not because of using the chair but constantly having to answer questions or just didn't feel like dealing with the stares. I would advise AGAINST the stroller idea - she is 11, and her being pushed in a stroller would make her feel like a really little kid plus it would actually illicit more stares than a wheelchair.

Although you will see other posts on here by me which are pretty adamantly against ECV use (the power scooters) for those who don't use them all the time, your daughter is actually the exeption to "my" rule against this. Since the one thing she will value more than pride is her independence (and I'm guessing that underneath her wheelchair reluctance because of stares is that she doesn't want to give up her independence). I don't think WDW will rent ECVs to people under 12 (or 16 or whatever), some of the private rental companies will, and they are cheaper than WDW rates anyway. You might want to take a trip to a local medical supply company (your hospital can advise you of your local ones) and have her try the scooters at one of the shops. She may find that, although she would certainly want to walk, that using the scooter isn't so bad.

Also, someone else posted the "give them something to look at" theory....I agree with it in principle but I don't know if your daughter has the confidence to do that (I didn't until I was an adult and knew how to dress to distract from the disability angle). Instinctively, I'm thinking that she just wants to blend in as much as possible and not look like "the poor little cancer kid", and if she can suitably use the scooter and be comfortable in it, it won't be such a big deal to her.

Also....good for her in fighting the good fight...I hope it all continues to go well for her.


Hope that helps.

 

[SueM in MN]

I don't think WDW will rent ECVs to people under 12 (or 16 or whatever), some of the private rental companies will, and they are cheaper than WDW rates anyway.

The WDW parks and most of the off-site rental places won't rent an ECV for use by someone under the age of 18.
Cheshire Figment has recently spoken to someone from Randy's and they said they would rent ECVs to someone at least 12 yrs old who is experienced (has one at home and did not want to/was not able to bring it). They may agree to rent to her, but even for a 12 yr old, they said it would be an individual decision on the part of the person who delivers it. Also, the ECVs are adult sized. They can be adjusted, but might still be too big for her (I thought I read that she is pretty short).
If you want to rent a child sized wheelchair or possibly a small scooter from home and bring it with you, the airline will transport it at no cost. You could check with the hospital she is getting care from or the Social Worker/Physical Therapist at school to see if they know of any local lending closets.

If you do rent a stroller for her and your other child to share, they won't be the only kids that big using them. They are more like carts and will fit up to a small 12 yr old. Many people do rent them even for larger/older children

 

[mickey&minniealways]

What about renting an EVC. I realize she may still have issues with thinking people will think she is faking it. But there is also a bias where some people would think that an older person is more likely to fake it. Go figure, but somehow they seem to think that a child would probably not be that cynical. I know a few of these. They fell that the older you get the more disalusioned you get with life and therefore are more likely to take advantage. At 11 she might just think that an EVC is a little cooler than a wheelchair or stroller, then there is the enjoyment of driving the thing. The ones you can rent from an outside company are much nicer than the ones you can rent in the park and you can use the all over WDW not just in the parks. They can help you arrange for this at your resort.

 

[Cheshire Figment]

What about renting an EVC. I realize she may still have issues with thinking people will think she is faking it. But there is also a bias where some people would think that an older person is more likely to fake it. Go figure, but somehow they seem to think that a child would probably not be that cynical. I know a few of these. They fell that the older you get the more disalusioned you get with life and therefore are more likely to take advantage. At 11 she might just think that an EVC is a little cooler than a wheelchair or stroller, then there is the enjoyment of driving the thing. The ones you can rent from an outside company are much nicer than the ones you can rent in the park and you can use the all over WDW not just in the parks. They can help you arrange for this at your resort.

This will not work.

Disney and most of the outside companies will not rent an ECV if the user is under 18.

The one company that I know will rent for a driver of at least 12 if that child has one of their own at home and is used to driving an ECV and did not bring it with them, or for an older child who is in a cast.

Also, Randy's has the policy of delivering to the user and not dropping off at Bell Services, and they will see that the user is competent no matter the age.