Child w/Cerebral Palsy + one w/heart concerns - WDW

The refillable cups are only at hotels, and only work in that resort (POFQ and PORS share a mug design, so you can use those at either hotel). As Sue said earlier, you can get a free cup of ice at any CS restaurant, which you can fill at a water fountain. Try not to power through Disney too fast. I know it's tempting to do everything all at once, but even those with no extra challenges will be flagging after a full day of Disney.

If you have any more questions at all, do give us a shout, it's likely that someone on here will have been there and done that already.

Have a brilliant holiday!
 
I use a wheelchair an electric wheelchair full-time, trach, vent, feeding tube, and issues with heat. I did tons of research for our trip last July.

Dining: I made a list of all counter service air conditioned restaurants.

Animal Kingdom: Pizzafari, Tusker's House, Restaurontasaurus (counter service is lunch & dinner only-basically McDonalds)

Magic Kingdom: Casey's (limited seating indoors), Cosmic Ray's, Pinnochio Village Haus, Pecos Bills, Columbia Harbour House

MGM: Backlot Express, ABC Commissary

Epcot: Electric Umbrella, Sunshine Seasons, Lotus Blossom Cafe, Tangerine Cafe, Yakitori House, Liberty Inn

I would NOT go off site for food because you will lose two or more hours. I have the menus saved and if you PM me your e-mail, I will send them as an attachment.

Keeping cool: I bought first aid ice packs from a local sporting goods store. I carried them and when I got hot they really helped. Mister fans from Wal-Mart also helped. Future World in Epcot has a lot of air-conditioned attractions. The hardest park will be Animal Kingdom. Get there early and if the heat becomes too much duck into a shop.

With planning, I am sure you will have a great time!

Good luck!

Christamae
 
The large cups with the animal heads on them at AK are refillable at a reduced rate as well. I don't know if they just started this or if it has always been this way, but I only noticed it a few weeks ago.

We spend quite a bit of time in AK as it is my 4yo's favorite park.

Enjoy your stay!

Amie
 
My youngest DD with CP has issues with heat too. Most of the lines are shaded and some of the outside lines are even air-conditioned (who would have thunk!).

Another thing we do to deal with heat is look at the weather report and plan our park days accordingly.
AK tends to feel hot and humid (probably due to all the foliage there). So, we look at the long range forecast and plan to spend one of the cooler days there. MK also feels hot and 'congested' to us (probaby because MK is usually the most crowded park). For us, because we have to lift DD onto rides that she can't stay in her wheelchair for, MK is the most tiring because many rides are not wheelchair accessible and most of the rides are very short - so it's get on- ride for 45 seconds - get off.
 

As for Zach, my son with CP, he said he will definately write something up and said he'd be specific as possible regarding stamina and fatigue.

For stamina and fatigue issues, Disney's standard policy is to tell you to use a wheelchair, ECV, or stroller. So for that, get the GAC that lets you use a stroller as a wheelchair for your older son. Then, get a GAC for your younger one to wait in a shaded/AC area when the queue is not covered/inside.
 
My sons mind-set is very important to me. While he knows he has CP, he doesn't consider himself disabled. They had a presenation at school about disabilities and he took part in the discussion talking about his CP, but he still came away from the experience feeling he's not disabled. Now its not like we're letting him be delusional - we talk about his CP with him and its limitations, he's had surgeries and does his weekly therapies, but in his mind he can do anything. And its that mind-set that has helped him achieve all he has. We were told he'd be wheelchair bound, but he walks. So I'd like to take as many precautions as I can to help ease his day, but I wouldn't want to crush his spirits with a wheelchair. We want to help him, not hinder his progress, at the same time make it as enjoyable as possible.
 
My sons mind-set is very important to me. While he knows he has CP, he doesn't consider himself disabled. They had a presenation at school about disabilities and he took part in the discussion talking about his CP, but he still came away from the experience feeling he's not disabled. Now its not like we're letting him be delusional - we talk about his CP with him and its limitations, he's had surgeries and does his weekly therapies, but in his mind he can do anything. And its that mind-set that has helped him achieve all he has. We were told he'd be wheelchair bound, but he walks. So I'd like to take as many precautions as I can to help ease his day, but I wouldn't want to crush his spirits with a wheelchair. We want to help him, not hinder his progress, at the same time make it as enjoyable as possible.

Ok, I completely understand your point, but even healthy adults have trouble walking the 5-6 + miles a day Disney requires to see and do. Many children his age ride in a stroller around Disney. I've seen 10-12 year olds in them. Disney doesn't have to do more than suggest that you keep his walking/standing to a minimum and that's the solution. I'm sorry.
 
Ok, I completely understand your point, but even healthy adults have trouble walking the 5-6 + miles a day Disney requires to see and do. Many children his age ride in a stroller around Disney. I've seen 10-12 year olds in them. Disney doesn't have to do more than suggest that you keep his walking/standing to a minimum and that's the solution. I'm sorry.
I agree with Forevryoung.
If you look at using a wheelchair or a stroller as 'crushing his spirit', it will do that.
If you look at it as a helpful tool to conserve energy, it will be that.


I know a number of people with CP who walked and looked at getting a wheelchair as a totally negative thing, to be avoided at all cost. Some of them ended up with problems later (arthritis in joints from overuse) that could have been avoided if they had made judicious use of a wheelchair. Some of them were crushed to start using a wheelchair, because they had always looked at it as 'giving up' instead of just another tool (like some people wear glasses, some people use wheelchairs).
My DD has always had a wheelchair, but also used a walker and did walk around the house and short distances with her walker. She never looked too good using it, but she got around.
She had a gait study when she was about 8 and the results of that showed she was using about 4 times as much energy to walk a certain distance as someone who didn't have CP would use. She stopped using the walker entirely after that point because she was starting to get arthritis in her wrists and knees (plus she developed seizures soon after and just was not safe in the walker). If she had been walking better, she would probably be still using a combination of walker/wheelchair, but it gives her much more independence to be a full time wheelchair user. I know other people with CP and post-polio syndrome who don't use a wheelchair in their daily life, but do for activities (like WDW or s afull day of shopping) that cause them to expend more energy.

Because your DS has CP, he's going to be expending even more energy to get from one place to another than other kids his age. And, as Forevryoung pointed out, many kids his age use strollers even though they don't have CP, so he will not be the only child his age using a stroller.

One thing a lot of people with endurance issues do is get a stroller or wheelchair and use it to get to a specific part of the park (like Fantasyland). They park it soon after the enter the area and then walk around and walk in lines. When they have made the 'circle' of the area and gotten back to the wheelchair/stroller, they use it to get to the next area where they repeat the process.
The amount of time and distance spend just walking around the parks is much more than you will spend in lines. That's why WDW suggests using a wheelchair/stroller/ECv for people with endurance issues. If you have limited energy to spend, it makes more sense to conserve it for fun things than to use it all up just getting around.
 
Points well taken. I particularly like the idea of taking the stroller to each "land" and then letting him walk from ride to ride. Hadn't thought of that, it will probably work out best.

Interestingly enough, my son will be having a Gait Study the week before we leave. I doubt I'd get the results before we go, but maybe they can give me some helpful tips as well. The doctor is hoping the results for this test will determine whether he should have surgery or not. I really hope he doesn't have to. :(

But as you know - all the doctors and therapist can get to me a bit much, I'm hopin' this vacation will be a nice distraction from all that.
 
Interestingly enough, my son will be having a Gait Study the week before we leave. I doubt I'd get the results before we go, but maybe they can give me some helpful tips as well. The doctor is hoping the results for this test will determine whether he should have surgery or not. I really hope he doesn't have to. :(
You've got to watch out for those Orthopods; they always want to do surgery. ;)
Interestingly enough, after that Gait Study, the Orthopod wanted to do surgery to correct her feet. He gave us a gloom and doom that her foot deformity (from spasticty pulling stronger on one side than the other) would mean that in a few years she would not only not be able to walk, but would not be able to wear shoes. Her Developmental pediatrician advised waiting a while since (with all the other problems she has), it didn't appear she would be a long term walker anyway. We decided not to go thru with the surgery and just watch the feet. It's more than 10 years later and they don't look any different than when surgery was advised.
It's really tough making decisions sometimes.
 














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