"disABLED" or not? (first post here)

[MaryAnnDVC]

teri sent me...

My oldest DD (13) was just diagnosed a few days ago with Chronic Recurrent Multifocal Osteomyelitis (CRMO). She's been in pain to varying degrees (sometimes extreme) in varying parts of her body (mostly back, neck, one ankle) since the beginning of September. She is responding extremely well to treatment after only two days.

We're heading to Orlando on Thanksgiving. When we met with the doctor to discuss the diagnosis last Friday, he was iffy about us being able to "do" Disney for 10 days; I have to get into more detail with him this Friday about any concerns HE has, and discuss our own. (We ARE going for 10 days, even if it means sitting by the pools and RELAXING.) She's had some bone damage in her spine, so even tho she looks good and the pain has subsided alot in these two days (and we assume will continue to lessen), we wonder if she'll be able to manage at the parks.

So...do we just take it easy and go by what she feels she can physically do on her own? Or do we get a wheelchair and any other accomodations (such as??)? I have to admit that having such a healthy looking kid getting in and out of a wheelchair, or not using it when she doesn't have to, does make me feel uncomfortable. I don't think I ever questioned or cared myself who uses wheelchairs at WDW, but I have seen the Great Debates on these boards over the last couple of years, and now I feel uneasy about it. On the one hand I feel like "who cares what anyone else thinks and I don't owe anyone an explanation", and on the other hand, I know that it would just irk me to be aware of any disapproving looks or comments.

Just want to get some perspective on this situation, even tho between now and then, things may change so much for the better that we don't even have to consider it (altho life at home...with an elevator pass at school, 2 sets of books (home, school), no phys ed, etc....is a lot different than running around theme parks all day). I'm just trying to prepare myself...just in case.

Thanks!

 

[MaryAnnDVC]

Never mind! Just started reading through teri's link to questions and answers, particularly the classic threads. Very enlightening.

 

[teri]

Mare, Welcome. I am very glad you are here, because this is a sign that you have decided not to cancel your trip. Hope we get a chance to meet.

Let me get right to the heart of the matter here. You need a vacation. Your daughter needs a vacation. Your whole family needs a vacation. Your doctor has expressed concern about her endurance and ability to tolerate physical activity. My dear, your daughter has a medical special need, her endurance and mobility are limited, strenuous physical activity could make her worse. Stop worrying about how it will look, and start thinking about what you are going to do to give your entire family the vacation they need, while keeping your daughter as rested and comfortable as you possibly can.

Using a wheelchair to get from point A to point B is a perfectly legitimate use for your daughter. Using the GAC to bypass the queue and wait in alternate waiting areas is perfectly legitimate. You are not scamming anybody, and you are not 'taking advantage' of anybody. Disney fully recognizes that some people have special needs and Disney goes out of their way to accomodate those needs. It is a gift - take it.

Using a wheelchair or other accomodations does not have to be a full-time thing. You can use them to conserve energy throughout the day so she can join in activities later in the evening without getting exhausted just trying to go the vast distances between attractions. She will always have a place to sit and rest. If she wants to get up and walk around, that is OK! Be sure to get the GAC so that you can indicate to the CMs that you need special access or accomodation, when she needs it. You don't want to stress her, and you don't want to let her wear herself out. She needs to pace herself, and you need to make sure she does.

Also, think of your other kids, and you... this is your vacation, too. If you are having to leave the parks early with a worn out girl in pain, that will be a major drag for everyone. If you are all slowing your pace to let her keep up with you when she is tired, how much will you get to see and do? Chances are, you WILL be spending less time in the parks and leaving earlier, and you WILL have to avoid certain rides and bumpy attractions... you WILL be doing less, even if you use a wheelchair. You need to make use of the time you have available, without stressing your daughter. This is supposed to be quality time... make it so.

Please be sure to read my FAQ... it isn't pretty, but I think you will find it has come important things for you to consider. And feel free to ask questions!

I think I will bump a couple of threads for ya when I get a chance, so stick around.

 

[Nanajo1]

Mare,
You've come to the right place. Teri is an expert who is so generous with her knowledge and experience. I second the GAC. Also if you explain to the MD what the GAC is and how you can use it he maybe be more encouraging regarding your trip.
I had Osteo as a child but not the chronic type. PD to your family. Have a great trip.

 

[s&k'smom]

Amen to the reply's. Honey, this is you and your family's vacation. I would also get a GAC and wheelchair if needed. Half the fun is relaxing by the pool and I'm sure it's just what your daughter needs. My son is diagnosed as mildly autistic and looks perfect (and very handsome!) but I will for sure get a GAC because he may flip out at any time and I'm sure it looks like just bad behavior to observers (yes I've gotten the looks), but if they knew him they would realize that's not really it. Have a fabulous, fabulous time and give a trip report when you get back.

 

[SueM in MN]

Welcome and ask any questions you can think of!
Don't worry about what people think. There are some who WANT to think the worst about everyone. We have had people comment that my DD "doesn't need a wheelchair" because they saw her sitting on a bench with her legs crossed and she was swinging her foot. That's about all her legs are useful for; she certainly can't walk on them and can't even stand on her own!
A wheelchair or a GAC are tools to help your DD do what she would not be able to do if she didn't have them and, as someone else mentioned, you can use or not use them as needed. Just because they are available, doesn't mean you have to use them all the time. In fact, when we were at WDW last March, we only needed to use our GAC once a day or so. Other times, we used fastpass and arranged our time to go to things that were not busy.
Some things to think about:
Epcot is a large park with a lot of walking from place to place. A wheelchair might be a necessity there. MK has a lot of short rides, so if getting in and out of the rides is going to be tiring, painful for her, you will want to pace yourselves there so you are not doing so many short rides in a row. The Guidebook for Guests with Disabilities will be helpful with that sort of information. There is one for each park and you can get them from Guest Services at any park.

 

[going2wdw]

I've recommended this board to anyone I know that may need special assistance in the parks. Morgan's comfort is your only concern - don't worry about those clods that think that only very extreme disabilities count.

 

[Wheelsie]

*hugs Mare*

WELCOME!!! Mi Casa es Su Casa!!!
GO on your vaccation....DON'T cancel... you will kick yourself BELIEVE ME!!!! (I almost cancelled this week and I don't even have working legs to kick myself with LOL)

 

[JudithM]

MaryAnn, enjoy your family vacation & do whatever you all need to have a good trip. Last year at this time I was reading these boards & realized that it is ok for me to use a wheelchair or an ECV & also to get a handicapped parking permit from my state motor vehicle office. So if your duaghter would be more comfortable using a wheelchair - it would save her energy, for example - then by all means use one. I suspect there are people who wonder why I use an ECV while at WDW. It saves a lot on my knees (I have a chronic knee condition), & makes the whole trip better for my husband & me. ENJOY!

 

[MaryAnnDVC]

Thanks so much for the info, and the encouragement. I've been fluctuating between thinking we're just not going to need any special accomodations (when she's having a good day) to thinking there's no way we can do it without them (when she's having a bad day). If we had to we'd hang out at the pool, like I've said before...I just need to get away! But if we can get out there and have some fun...whatever we have to do...we're doing it, and scr*w the looks and comments! I think I'll start practicing nice responses to people in the mirror. Although I sort of picture myself yelling out every few minutes "She has Chronic Recurrent Multifocal Osteomyelitis...OK?" LOL

 

[Puffy2]

GO! Absolutely and use whatever you need to to make it easier on your daughter and you too - wheelchair, ECV or whatever.
Have a great time and don't think another thing about what "may or may not be" on other's minds!

 

[SueM in MN]

Some of the posters had mentioned ecvs, so I wanted to mention that the parks (and also the outside rental places) won't rent ecvs to children. Depending on your DD's size, she might find an adult wheelchair is too large and not very comfortable. If it's too big, she'll either have to sit far forward (and won't have back support) or she'll have to sit all the way back and have her legs out straight in front of her (since the edge of the seat won't come where her knees are.
If you are working with a physical therapist (privately or thru your school district) they would be able to help you with sizing. I am not sure if pediatric wheelchairs are rented by the usual rental places that DIS posters suggest, but here is how to contact them:
Care Medical:
http://www.caremedicalequipment.com/

Walker Mobility:
1-888-726-6837
www.walkermobility.com

RANDY'S Mobility is in Kissimmee 407-892-4777
http://randysmobility.com/

Colonial Medical
http://www.colonialmed.com/about_cms.html
Also lists respiratory equipment

Someone had suggested also:
ttp://www.all-about-kids.com/main.htm
They offer childcare services (including Special Needs) and they rent children's wheelchairs and other equipment!

 

[MaryAnnDVC]

Thanks Sue. DD is 5'3 1/2" and about 105 pounds, so I think she should be fine in an adult wheelchair. I had wondered about the EVC for kids, but we should do fine with a wheelchair for the amt of time I suspect she'll need it. I think we're going to discuss any need for physical therapy today when we see the doctor.

 

[SueM in MN]

She's big enough that she should be OK. We don't rent a wheelchair since DD has her own, but I think they have narrow adult chairs and wide adult chairs at the parks.
If you want to have a wheelchair available all the time, you can rent one from one of the offsite places. You will have more choice of sizes there too. I know they don't rent ecvs for use by children, but I can't remember if someone had posted that the cut off is 16 years or 18 years. Since your DD is only 13, I guess it doesn't matter.
Have fun!

 

[typhoon canada]

Go on your family vacation. Disney will treat you right believe me. I have to use an
Ecv when I go to the parks since my disability does not allow me to walk very far.
I must say that who cares about everyone else!!!!!!!!!!!!!
As long as your group is happy, POOH on the rest and their little minds.

The wheelchair is good and there are alot of ramps up and down so hang on.
There is no where as far as I know where you can not go.
Disney made sure of that!!!!!!!! So 3 cheers for them.
I enjoyed my trip every minute.

If you are renting a car then I suggest you have a Handicapped sign then you will
be able topark for free and close to the parks entrance.
Except Magic Kingdom but I have found a secret park at the Comtemporary and take the
train over. Works for me!

I hope you have a great trip and enjoy every minute. It is Magical



inkbounc

 

[nancycels1953]

we used to do that, but the last time we were there, they asked for our room key/number and were cking too! We certainly weren't parking in their handicapped spots or the ones near the door that are #'d....but be careful, don't depend on it. But it is a nice way to get around!!! We stay off site, maybe that was the problem. I guess if u took a shuttle over they cdnt do anything/ or a cab.

 

[SueM in MN]

They have been giving 3 hour parking passes at the Contemporary for some time to people who are parking there for viewing the resort or eating at the resort. That is to cut down on the number of people who are parking there and then using WDW transportation to get to the parks.
Also, I have nver heard of them giving free parking at the parks for showing your Handicapped Parking permit. We always stay on site, so we have free parking for that reason, so it may be that I'm just not aware of it.

 

[SueOKW]

Mare! Do it baby! Let her be comfortable - you guys will learn to endure to boors... and think how restful the whole trip will be and the benefits of the warm sun... I'm there!!! ha ha! get the chair. Take advantage of the system Disney freely offers. You will be so glad you did. You just need to learn how to smile down the stares..

have fun.. and here's looking for a great trip report upon your return.
Sue
going to OKW end of March 02
SuperFan of Omar Vizquel - who just won his 9th consecutive Gold Glove award....