Taking my niece with Rett Syndrome to WDW, a few questions...

[jenny2]

Hi everyone! We're taking our 20 year old niece, who has Rett Syndrome, to WDW in January, and while my family has been many times to the World this is her first time . We travelled with another family a few years ago who's daughter had CP so we have some idea of what to do and not to do, but I'm looking for some advice here. DN lives with us, as well as my inlaws who are her legal guardians - we're all vacationing together (heaven help me, lol).

DN needs to stay in her wheelchair. At 20 she's just too large and her movements too unpredictable for us to carry her onto anything. I was excited to see the list in the FAQ of rides that she can stay in her wheelchair for.

My first question was about the GAC. What, exactly, would we use it for? It's very obvious by looking at DN that she cannot come out of her wheelchair. She doesn't have any sensory issues, and we plan on bringing earplugs for noise and her CD/favorite music for times she needs to chill. What would we need the GAC for?

My other question is about bathrooms. She wears an adult diaper, and is going to need to be changed in the park. Is there a list of where family bathrooms are? We'll need 2 people to lift her up and change her and it will be much easier in a family bathroom.

And last but not least... Hoya Lifts. I had planned on renting one from one of the companies in the FAQ. DH and I have no problem manuvering DN around, but if we're ever not in the room and MIL and FIL want to get her up I want them to be able to use a lift like they do at home. We're staying at the Beach Club Villas, and DN will have the pullout couch to sleep on. Does anyone have any experience with using the lifts on a pullout couch? My concern is the legs won't be able to get under the bed. Perhaps if I called the hotel they can tell me how high off the ground the pullout couch is? How's that for a strange request!!

Well, I'm sure I'll come up with more questions. Just wanted to get these out while I'm thinking of them!!

 

[OneLittleSpark]

Here's a list of companion restrooms in the parks. There's also a link to some photos of a typical restroom there. All of the First Aid rooms have large restrooms you can use as well.

Can she transfer at all, or not? If she can manage some transfers with your help, she may be able to do some of the Disney rides (though some would probably be too tricky a transfer for you). In case you haven't found the link from the FAQ, The Mouse On Wheels has detailed information on ride transfers.

The Guest Assistance Card is designed to help people who's issues would not be catered for without extra help. For instance, if you have sun intolerances, you may be able to wait in an alternative area before you board the ride (not all rides have alternative areas, though); or if you have hearing or visual problems, you can sit further forward in shows. It's not designed to shorten or skip lines, but can provide assistance to those who need a little extra help. If using a wheelchair will cater for all her needs, you probably won't need to get a GAC.

The hotels are probably fairly used to strange requests, and I'm sure they will have had stranger than that! It's Disney, they'll usually bend over backwards to help you, so I doubt a little thing like getting a measurement will put them out too much.

When you think of those other questions, give us a shout and we'll do what we can to answer them!

Have a great trip!

 

[madenon]

Here we go yet again. No the GAC is NOT a get-to-the-front-of-the-line-card.

Not everybody needs a GAC. If your DN is fine with 'just' her wheelchair, than she's all set to go. A GAC is nothing more or less than a card explaining somebodies (not directly) nonvisible needs to CM's. For instance; letting parents of young children use a stroller like a wheelchair when needed, or waiting your turn in the line in a shaded place for those attractions that have waitinglines in the full sun.

Jenn, great he how accessible WDW is without transferring! I hardly transferred for anything during my trip and I am so in love with the possibility of staying in my chair and not injuring myself (I'm injury-prown so each transfer is a risk). Sometimes you'll have to wait a while longer (especially with the Safari in AK, you'll need to go through the standard line first and THEN the line for accessible vehicles, sigh), at other times you'll get on a bit earlier. It all depends on when the accessible cars/boats/whatever comes around and how many in front of you need to use it. At each ride I was asked whether or not I would transfer or not (for your image; I'm in a powerchair). I simply told them 'no, thnx', and no problem.

The parts of my disability that WDW needed to help me with (afterall they can't fix everything, it's magic there but not that magical) were all dealt with. Because of the wc it's very visable that 'hmm, ok, that person aint going to walk miles and miles'. I didn't get a GAC, nor did I need it. Everything was great everywhere I went, no problems at all.

Call special request about the bed!! That isn't a strange question, they get stuff like that all of the time when it comes to those with disabilities or illness and wanting to make sure everything will be allright for them. You can find the direct number in one of the stickies Sue posted on here.

If you read around on this part of the DIS, you'll soon find all kinds of postings of people with their experiences around WDW. Welcome to this part of the DIS by the way!

 

[jenny2]

Thanks for the quick replies!

First of all... I have been poking around here for a while and I know the GAC is a heated subject and that it's not a go to the front of the line card, so no misunderstanding here. Our friends that we went with a few years ago whose DD had CP had been going to WDW for years and never heard of the card. The trip they went with us I told them about the GAC, he went and got one and at the end of the trip said it really wasn't necessary - like my DN, his DD's disabilities were right out in the open. I can see where it would help those with hidden disabilities, but I think in our case they'll know something's up with DN - like madenon said, she's obviously not going to be hopping out of her chair and walking around! She doesn't get out much and so if it seems something would help us I'm glad I know about it, but as it stands now I don't think we'll need it.

OK, I will call the resort and get the measurement under the bed. It'll make me feel much better about getting the lift. I'd hate to get it and not be able to use it to get her out of bed.

Well, I'm not 100% sure about the transfers. DH can lift her up. The problem is when she's out of her chair she tends to rock alot, lol. We'll sit her on the edge of her bed with her legs hanging down and she'll rock and rock. I'm worried that with all the new stimuli (she doesn't get out much, and this will all be very new to her) it may increase the rocking and I'd hate for something to happen in the middle of a ride because she's not happy. I guess we'll play that by ear.

Thanks again everyone!

 

[jenny2]

Ugh, I really didn't mean to open the GAC can of worms.

For the record, I wasn't asking what it was (I know what it is, and I've been with people who have legitimatly used it). I was asking what kinds of things it can help with. I'm trying to be as prepared as I can when taking DN, and I want to make sure I know that if she's having trouble with something it either will or will not be able to help her.

And not to perpetuate the GAC talk any more than necessary but I just had to say

people get wheelchairs or buy GACs from Ebay trying to skip lines

just makes me sick

 

[Mason7AK]

Jenn, Just wanted to suggest when changing your DN you take her to the first aid stations. Our DD is 6 and DS is 5 and we find it too difficult to change them in the companion restrooms. There just doesnt seem to be enough room and no where to change them, except in their chair or on the floor (YUCK) ! So we always use first aid. They are so nice and helpful there. You can use one of the full size beds to lay them down on for changing and have a door for privacy, and there is plenty of room for two caregivers to be in the room and help. It can be a little inconvenient to trek all the way back to first aid, but we find it worth the extra walking. HTH. Have a magical trip!
Angela

 

[OneLittleSpark]

Ugh, I really didn't mean to open the GAC can of worms.

Don't worry about it, we're just eager here to make sure that no one gets the wrong idea about GACs and is disappointed when they get to the parks. We get a lot of people reading the threads here and not all of them post, even if they're unclear on something, so we want to make sure what we're writing is clear and correct.

As for the GAC, as people have said, if the wheelchair will meet all her needs at the park, you should be all set without one. If, however, she has some other, invisible issues (e.g. sun intolerance, visual / hearing problems, problems with crowds etc) you may want to look into getting a GAC. Can you think of anything in particular that you might need extra help with?

Hope this helps!

 

[Cheshire Figment]

Hi Folks

Sorry for the post deletions, but I think that the reasons are obvious.
Jenny -

You might want to click on where it says "disABILTIES" at the top of this page it will take you to the Index. The top item is the "disABILTIES FAQ" which will gives lots of useful information, including some about the GAC.

Basically when you go to get a GAC you would explain what the needs are and you will be give a card with certain stamps which will assist.

And I would agree with use of First Aid rather than the Companion Restrooms as they have tables that will take an adult.

Also, I would suggest calling Special (Medical) Reservations at 407-939-7807 and explain the needs for in the room. they are the ones who maintain the inventory of accessible rooms and would have the best information. If you have your confirmation number they can even block a specific room (or rooms) for you.

 

[mechurchlady]

You need to read the Autism threads because they can help you deal with issues such as getting her prepared for the trip, desensitizing her to stimulus, and handy tips for dealing with a disabled adult who has mental limitations.

The FAQs have lots of great links but here is a short version. Disable placard if you are driving. GAC is a must just in case as it is better to get the GAC than need it later. Definitely use the nurses station for changing clothes for example and care.

Google and Youtube have videos that will show the rides and some the the show lines. The term "transfer" can mean something simple like sliding over into a seat to more difficult maneuvers like getting into a theater chair or climbing into a ride vehicle. When mom came home from the hospital it was almost impossible to lift her and transfer her which wore me out at the end of the day. Remember to not overdo it for yourselves. It is tiring pushing mom around Wal-Mart let alone all day in any public venue. Do not worry if you miss a lot of stuff as long as she is happy.

 

[SueM in MN]

I´m still out of the country, but just popping in to add a few things.

For the GACs, if you find you have problems with lines after you get there, you can always go to Guest Services to request one any time duing your trip. That´s what I often advise people who ask "what kind of assistance will a GAC give". If you don´t have any ideas after reading the disABILITIES FAQs thread section about GACs, you may not need one. If you find you have problems while waiting in line, you will have an idea of what type of assistance to ask for. So, in your situation, I would just wait and see.

You mentioned that she rocks when out of the wheelchair - for the rides where she might be able to transfer, that could pose a problem. Most of the rides have slippery plastic seats that are not very deep. A bit of rocking might rock her right off if she is anything like the 2 young ladies I know with Rett Syndrome. Both of them can get their wheelchairs moving when they start rocking. Given that, I think you may be wise to stick to the rides/attractions where she can stay in the wheelchair. Also, some of the 'transfer rides' would be very hard to do with/for someone who normally uses a Hoyer lift.

I agree that First Aid may be your best choice. The larger/newer Companion Restrooms would defineatly have enough room for 2 helpers in the room with the wheelchair, but unless she can stand up while she is being changed, it would be quite hard. Some have a built in changing table, but they are usually less than 4 feet long and are counter height (about 32 to 34 inches high) - way too high to left an adult.

For the pull out beds at Beach Club Villas - the DVC villas have 2 styles of pull out beds. They are gradually changing the older sofa beds to a new style. So, when you call the Special Reservation number, you may want to ask for the measurement of both styles. I don´t know whether BCV has both styles or only the new ones, but it´s probably best to ask.

 

[jenny2]

I haven't been online in a while... just wanted to say thank you so much for all your help and advice!! I have a call in with BCV for the bed measurements, so that should be taken care of soon (though they did say they think there's over 6" of space which would be fine for the lift).

DN is about 120 pounds and around 5'8" so transferring definitely becomes an issue. I'll leave that up to DH, though, because he's the only one strong enough to pick her up. And yes, Sue, she does get a-rocking, lol. When she was younger we used to put blankets and pillows on the floor and sit her down... and she'd rock and scoot from one end of the room to the other, lol. Nowadays, she can get her wheelchair moving if we don't put the brakes on.

She hasn't been feeling well lately. A few weeks ago she had a tendon release done on her ankles and it's taking a while for her to bounce back. She's not eating much, and is (understandably) crabby. Hopefully when she goes to the doctors in a few weeks and gets the pins out she'll feel like herself again. I miss her smiles

Thanks again everyone!!!

 

[SueM in MN]

thanks for checking in.
hope things go well when you get there and that she recovers quickly from her tendon release.