What should we expect from the GAC for our medically fragile daughter?

[Wendydagny]

Hi everyone.

We are taking a trip to WDW in about two weeks with our daughter who is best described as medically fragile. She is four years old, has Down syndrome (functions at about the level of an 18 month old), is in a wheelchair, has dysautonomia and is in intestinal failure, dependent on TPN through a central line 24 hours a day. She has an ileostomy, is cathed every four hours, has two additional bags collecting drainage from her stomach and intestines. I can transfer her from her chair to a ride, but it isn't a super quick process because we have to make sure that none of the million tubes attached to her body aren't getting pulled out, and all the backpacks make it into the ride car.

We brought our daughter to WDW last December on a MAW trip, and she had the best time of her life. For the first time, we felt like she got to enjoy things like a normal kid, and she was able to ignore her pain and discomfort, and just be HAPPY. She is not doing better medically at this point, is about to be listed for a small intestine transplant, and we feel like we want to take her WDW one more time, in case there really is only one more time, you know?

Our general plan is that we will be getting to the parks at opening, taking breaks during the heat of the day and eating all our meals (dh and I, not dd of course) in table service restaurants so that she can be in the air conditioning, as well as several character meals. We are staying at the contemporary to have the convenience of the monorail. We have an MK view room so we can watch the fireworks from our balcony every night.

We know that our daughter will qualify for some kind of GAC, but we are really at a loss of what to ask for for her. Or what we can even expect. Based on what I've read here I know that we can ask for:

1) Stroller as a wheelchair. Easy.
2) Lines out of the heat/sun, due to extreme dehydration risk (we can only rehydrate her via IV), and dysautonomia.
3) Alternate entrance? Not really sure if she qualifies for this one. She does not have autism, afaik, but she does have severe developmental delays that make waiting in long lines difficult because she does not understand. And her freaking out is not an option because of all the "stuff" attached to her.

Am I missing something? Is there something else I should ask for? The reality is that she is a very sick little girl who needs whatever assistance they are willing to give her so she can enjoy just a few hours in the parks each day. I know that we had the special stamp on her GAC for her MAW trip, but I know we can't get that again, so I don't know what I need to know! There really isn't a lot of info out there about taking medically fragile kids to Disney on anything BUT a wish trip. Maybe that means we're crazy.

 

[Wendydagny]

Oh one more question. Is the First Aid station set up so that we could cath her there? (We use the closed system bags.) I don't want to freak people out doing it on the baby changing table in the regular restroom!

 

[livndisney]

Wow! OK first of all-I hope your daughters trip is MAGICAL!

Second, you don't have to "ask" for specific things with the GAC. You need to be able to tell what her needs are and the CM will stamp the card accordingly.

You are correct, you will not get the front of the line like the MAW. But you will be able to use her stroller as a wheelchair.

I am not familar with closed bag caths, but I don't see why you could not do it First Aid. I know they have a treatment room set up. I am sure if you explained to the staff at FA what you needed to do they would advise the best way to go about it. If for some reason you can't use FA, the Babycare center is right next door and has several tables for use in diaper changing.

You can also use FA to cool down if needed.

You may want to check the sticky at the start of this thread. I know there are a couple of rides where the Cm's are not able to slow down the belt. One is Peter pan and another is the TTA.

 

[SueM in MN]

livndisney covered all the main points.
There is more information in post 6 of the disABILITIES FAQs thread about Guest Assistance Cards.
As livndisney mentioned, you tell the CM what difficulties your daughter has and they will figure out what to put on the card.
Avoid medical terms when you are explaining things. I am an RN and know what the terms you used mean and what types of problems your child may have. The CMs are not medically trained and will not know what most of the terms mean. You need to explain in very simple terms what could happen if she overhears or goes into dysautonomia and what conditions you need to prevent it, for example.

At MK and at AK, there are many things where the wait is outside and/ or the attraction itself is outside. That makes planning veyi important. You want to hit the outside attractions - like Dumbo or Aladdin at MK early in the morning or late at tnight to avoid the heat.
We also watch the weather and change our plans to not go to AK if it will be too hot and humid.

Epcot and the Studio have many more indoor attractions where the queue is indoors in air conditioning too. Your problem there will be getting from place to place where a GAC will not help you. A touring plan, or at least knowing which park is likely to be most busy will be very helpful to you. Touringplans.com is one frequently mentioned by posters as being helpful.
If you have a smartphone, like an iPhone or an android, you can also get apps that list the current wait time for attractions. Even though you will have a GAC, it is not meant to shorten the wait in time and you will find that it does not give the same access as the MAW GAC.

The attractions wight the longest waits are the 'thrill' rides that you will not be going on anyway because of your daughter's special needs.

First Aid does have rooms where you can do any treatments you need to do. They can also store equipment or supplies for you if you have things you won't be able to carry around with you all day.
You would also be able to use the Companion Restrooms, which are located in various places in each park. They are a single restroom with a lockable door, toilet and sink. Many of them have little counter space, so may not work if you need to lay things out. But they should work for emptying the drainage bags.
There is more information about Companion Restrooms in post 3 of the disABILITIES FAQs thread. You can find that thread near the top of this board or follow the link in my signature.

 

[dclfun]

My biggest concern for you since you are coming in two weeks is that it is broiling, grueling, HOT right now. I live in Orlando close to the theme parks and can barely stand to be outdoors for most of the day. It's like smothering in a sauna and then there are the daily pelting rains. I would look into a cooling vest for your daughter or a cooling blanket to place over her, plus a stroller with a good canopy and perhaps an attached fan. I guess with the heat I'd be afraid that she'll dehydrate since she may not be able to take extra fluids. If you have few hours to spend in the parks anyway, go early and return to enjoy your resort and nap in the afternoons. Then return to the parks when the sun goes down. I just know that for those who don't live here, it's hard to imagine the level of heat and humidity. I hope you have a great trip though and that your daughter can feel as much magic and happiness as she did on her MAW trip. She deserves it, and so do you!---Kathy

 

[KPeveler]

I am just agreeing with what everyone said above. I would definitely look into lots of cooling options. I have a mild condition under the umbrella term of dysautonomia, and I have problems maintaining the proper body temp and hydration here in SoCal, where there is not the awful humidity. Even today I had to take a couple AC breaks when I was in the parks for just a few hours.

I suggest cooling vests (or even just ice packs under clothes if it is too hard to get a vest on short notice), fans, cooling bandanas, etc. You can also get ice or cold water at just about every CS or TS service location.

 

[Wendydagny]

We grew up in Florida, so we know what we are dealing with in terms of heat/humidity.

She already has a cooling vest/mist fan/shade for her stroller. Unfortunately she can't drink ice water (or anything), but we will have extra iv fluids available and running. Our plan is truly to minimize her time out of the sun and heat by touring early and at night. And to not be stupid-- we will just leave and go back to the hotel if it is too bad! We know this isn't the ideal time to take her, but it may be the only chance we have.

I just don't know what sort of accomidations we should get or expect from Disney, and they will definitely factor into our planning!

On a weird note, when we took her maw trip, they actually never took us to the fol, even though she had the special stamp for it. They just sent us to the fp or handicapped entrance. I don't know if it was because it was crowded and Christmas week or what. But that seemed to work well enough tomeet her needs, so it was fine.

 

[SueM in MN]

We grew up in Florida, so we know what we are dealing with in terms of heat/humidity.

She already has a cooling vest/mist fan/shade for her stroller. Unfortunately she can't drink ice water (or anything), but we will have extra iv fluids available and running. Our plan is truly to minimize her time out of the sun and heat by touring early and at night. And to not be stupid-- we will just leave and go back to the hotel if it is too bad! We know this isn't the ideal time to take her, but it may be the only chance we have.

I just don't know what sort of accomidations we should get or expect from Disney, and they will definitely factor into our planning!

On a weird note, when we took her maw trip, they actually never took us to the fol, even though she had the special stamp for it. They just sent us to the fp or handicapped entrance. I don't know if it was because it was crowded and Christmas week or what. But that seemed to work well enough tomeet her needs, so it was fine.

Going at a busy time, things work differently. The CMs are already stretched because of crowds and doing any ‘extra’ things are more difficult.
As long as it worked for you, that’s what counts.
And, just so you know, most attractions don’t have handicapped entrances, so in many of the places where you used a ‘handicapped entrance,’ you were using a different entrance than would be used by people not on a MAW trip.
AK and the Studio were built with mostly Mainstream Lines - accessible thru the regular line. MK and Epcot still have some attractions that are not mainstreamed, but most were renovated to be Mainstream.
Especially at MK and AK, where many attractions are outside, there may not be anything that really helps that much for a GAC. For things like the Jungle Cruise, the line is covered, but there are no air conditioned places nearby where you could wait. If you need the wheelchair accessible boat, even if they put you on right away, if the boat has just left, you will have to wait one cycle (about 15 minutes) for it to come back.
What parks and what attractions are you hoping for?

Transfers in the heat will take more out of her (and you) than if it were not so hot and humid. It may make more sense since she is so fragile to concentrate more on shows and things where a transfer is not necessary.
When it’s hot, we also try to split up rides that require a transfer with attractions that don’t.
When you think of MK especially, most rides are only 90 seconds to 2 minutes. So, getting on and off means 2 transfers within a less than 10 minute timeframe. If the next attraction you go on also is short with a transfer needed, a shorter wait won’t help much because the transfers themselves may take so much out of her. That can be very draining and you may find that she only tolerates one attraction without actually going inside a restaurant or some other cool building where you can rest. (If you are not at [peak mealtimes, you can go into counter service restaurants and just sit. During busy times, you will not find a table and may be told you can’t sit without food).


We can’t tell you what to expect exactly with a GAC because each attraction is different and even at the same attraction, the same GAC may be handled differently depending on crowd levels and staffing.

I would look at touringplans.com or another website with crowd estimates and check out which parks have the ‘green’ or recommended symbol for each day. You may need to change some of your table service reservations if you find that you have chosen all the ‘red’ park days.
Also, just so you are aware, the counter service restaurants are air conditioned, so you don’t need to get table service to get air conditioning.

The concern I would have for having a reservation for each meal would include whether you are actually able to stay in the park long enough to get to it.
Even with a reservation, you can be waiting for as 15-30 minutes, with some of the waiting areas being outside or rather small. If it’s outside, you can request to wait inside, but they may not be able to accommodate you.

Also, with First Aid, you can go in there just to get out of the heat and/or if she needs to get out of her chair for a few minutes. They would rather have people in there cooling off than needing to be treated for heat stroke.

Before you go, get information from her doctors for suggested places to go if she does need care (Im sure you did that before the MAW trip, but just want to point out so you don’t forget).

I am in Minnesota and yesterday and today, the heat index was higher here than in Miami (so really sauna-like). Our windows are all full of condensation because there is so much moisture in the air that it just settles on anything that is cooler. Cooling vests don’t work as well in those kinds of conditions and fans move the air, but hot air blowing doesn’t really cool.
I am not someone who sweats much, but going to WDW in this kind of heat, I felt like I was going to melt. It’s that way here in Minnesota today, so even going out to get the mail is a major excursion.
This is not to say, ‘don’t go’ because I understand why you want to go not. It’s just a warning that the weather may make her condition change much more quickly than you are expecting.

 

[Wendydagny]

Thank you for taking the time to respond and help. It really means a lot.

Her cooling vest is actually the old school kind with ice packs, not the evaporating one, because she can't get her central line wet. That should still work fine in the heat, right? It's the other kind that don't work if it's too humid, afaik.

Her doctors give us a packet each time we travel, as her medical history is so complex, we just can't show up at the random ER. We are supposed to go to Arnold Palmer if there is a problem.

I used the crowd recommendations from Touring Plans (got them one month out before they go "member only") to determine our locations for meal reservations. I basically have us with breakfast or an early lunch (11:30-12:15) in the park we have planned for each day. Our dinner reservations are all at resorts, again early (5:30-6). I know the CS locations can be ac'ed, but we found on our MAW trip that it was very difficult to do those kinds of places with dd-- we need waitresses to come to us, and to not be fighting for a table, lol.

We plan to go in the morning at rope drop, eat, leave to go back to our hotel for a break. And then go out to dinner and hit the parks again in the evening for a few hours. Does that sound reasonable? If she can handle more, our plans would allow for that, but if she can't, then it's not a big deal.

As far as what we want to do in each park, here's a rough plan, not in order at all.

MK (two mornings and evenings as tolerated):
Dumbo
Snow White
Pooh
Peter Pan
Buzz Lightyear
Monsters Inc
Country Bears
Breakfast at CRT (we have an 8:05 ADR)
Bippidi Boppidi Boutique (we have a reservation at 12:00)
Breakfast at Ohana (I know this is at the poly, but it's a MK day, 7:30 ADR)

And if we have time and the weather permits:
Pirates
Aladdin
Jungle Cruise
Mickey's Philharmagic

Epcot (one morning and one evening after dinner at the Boardwalk):
Nemo/Crush
Imagination
Living with the Land
Spaceship Earth
Akershus Princess Breakfast (8:05 ADR)
Walk around countries in the evening

Hollywood Studios (one morning):
TSMM
Meet Buzz/Woody
Star Tours (no, she is not riding this. This is the one thing WE can't miss)
Beauty and the Beast (may skip this one if the theatre is too hot-- our plan is to do the first show of the day, which is 11:30)
Lunch at Sci-Fi (12:25)
If we have time or B and B is a no-go:
Little Mermaid
Playhouse Disney

Animal Kingdom:
Lion King
Nemo
Lunch at Yak and Yeti
I actually have this day totally planned out already, since it's all things with set times.

Does that help?