Planning his first trip - nephew with Pelizaeus-Merzbacher disease

[LilLisaLou]

My nephew has Pelizaeus-Merzbacher disease (PMD) and has limited mobility. It's his first trip to WDW and my first trip taking someone with mobility concerns to WDW.

We are going at the end of September and staying on points in 2 bedroom villa at AKL Jambo House. My parents are also staying at AKL, just not with us. My husband and at least two of my daughters ages 8 and 10, will be there with us.

My sister (his mom) will be there with us but she's just not a Disney person so she said that I can plan whatever and they'll just go with the flow. He's in kindergarten and he has two types of wheelchairs, one that looks like a traditional wheelchair and one that looks more like a stroller. She said that the stroller is easier to get in and out of the car. We will have my husband and my dad also with us so they can help with lifting it wherever.

I'd like to try to preplan the questions that I'll need to ask her in order to make sure that this is a great trip for him. Asking her for information specific to my nephew's needs are okay, but she really doesn't want to know or help plan anything. When I asked her what were some of the things that she'd like to do, she said visit Cars :-/ Well, I have that here in So Cal, but not in WDW LOL After that she said that she just plans on doing this one trip and that's it. She said I can take him to Carsland when they come to SoCal next

So what are some parameters questions or things that I should be asking her?

I thought of:
how will we get from place to place (WDW transportation or private car)
what kinds of rides will he be safe doing and what would he like to do
how long would they like to be in the park (we are traditionally rope drop then leave at lunch for swimming and naps people) but if we did that, do they want to go back into the park

Does anyone have a good planning for mobility concerns for kids planner for WDW? Even if it's one that I purchase? We are planning on hitting all four parks but not the water parks.

 

[gap2368]

My nephew has Pelizaeus-Merzbacher disease (PMD) and has limited mobility. It's his first trip to WDW and my first trip taking someone with mobility concerns to WDW.

We are going at the end of September and staying on points in 2 bedroom villa at AKL Jambo House. My parents are also staying at AKL, just not with us. My husband and at least two of my daughters ages 8 and 10, will be there with us.

My sister (his mom) will be there with us but she's just not a Disney person so she said that I can plan whatever and they'll just go with the flow. He's in kindergarten and he has two types of wheelchairs, one that looks like a traditional wheelchair and one that looks more like a stroller. She said that the stroller is easier to get in and out of the car. We will have my husband and my dad also with us so they can help with lifting it wherever.

I'd like to try to preplan the questions that I'll need to ask her in order to make sure that this is a great trip for him. Asking her for information specific to my nephew's needs are okay, but she really doesn't want to know or help plan anything. When I asked her what were some of the things that she'd like to do, she said visit Cars :-/ Well, I have that here in So Cal, but not in WDW LOL After that she said that she just plans on doing this one trip and that's it. She said I can take him to Carsland when they come to SoCal next

So what are some parameters questions or things that I should be asking her?

I thought of:
1 how will we get from place to place (WDW transportation or private car)
2 what kinds of rides will he be safe doing and what would he like to do
3 how long would they like to be in the park (we are traditionally rope drop then leave at lunch for swimming and naps people) but if we did that, do they want to go back into the park

Does anyone have a good planning for mobility concerns for kids planner for WDW? Even if it's one that I purchase? We are planning on hitting all four parks but not the water parks.

1 all disney busses are wheel chair assessable so you can take this I find it easer to use disney busses then drive ( but I dislike driving with a passion ) and some say it is easer to drive. since you are staying on site you can park for free

2 as long as he can get in and out of the ride vehicle ( or some one lifts him) and as long as he is tall enough he can ride what ever you and his parents feel like he can ride

3 I think this is up to you at disney you can come and go as much as you like If you have no park hoppers then you have to go back to the same park or if you have park hoppers you can change parks ( I have gone back to the hotel a number of time)

lastly if you are using a wheel chair that looks like a stroller ( even if it looks like one just a little ) stop by GR and get a stroller as a wheel chair tag

 

[minnie mum]

Without knowing which form of the disease he has, it's hard to give suggestions. My understanding is that kids with PMD fall onto a spectrum and that it is a progressive disease. So without knowing how weak or spastic he is, it's hard to suggest which rides would be appropriate, or which would be too difficult. Some kids, for instance, might be able to handle SDMT. Others who can't hold on or maintain their balance while seated, couldn't do it. Also, does he have any of the cognitive or visual problems that these kids sometimes have? If so, you may have to modify your touring choices.

Honestly, if the mother has never been to WDW, and doesn't know the rides and shows, etc, you're probably better off judging yourself whether the attractions are appropriate for him. Nail down just what his physical limitations are. How is his upper body strength? Can he sit upright unaided? How is his endurance? Does he have dietary issues? Will they need to use the companion bathrooms in the park for his toileting needs?

Once you know these things, you can go ahead with your planning. Sounds like the mother would prefer that you make these decisions.

There is a FAQ sticky at the top of the DisABILITIES main page that has great info. Pay particular attention to post 11 and posts 18-21. The WDW site also has a guide for Guests with Disabilities.

 

[ErinTwinmom]

So pmd has so many levels that with out knowing the child its hard to give good advice. That being said pmd at that age often includes speech delays and cognitive issues that can in some ways can be similar to autism, if that is the case I would read up on das, if he is a laid back little man in his wheels all you should need is the stroller tag. You should definitely talk to his mom about any food requirements. Know where the baby stations, assist bathrooms, and first aid are. Remember if any of his meds should not get to hot, first aid will be happy to hold for you. Depending on how well he sits remember at shows just because he came in and will leave in his chair he can still transfer to a regular show seat if he wants to for the effects. All I got right now but all my trips to Disney involve autism and multiple mobility devices, so if you have any questions let me know.

 

[SueM in MN]

Follow the link in my signature to the disABILITIES FAQs thread. (You can also find it near the top of this board)


The first post is an index that tells what each of the other posts is about.
Post 4 is about bus transportation. As was mentioned, all the WDW buses are wheelchair accessible and have wheelchair tie downs to secure a wheelchair to the bus to allow the user to stay in the wheelchair go ride. If his stroller has a transit option, it would be safe to tied down and ride also. If it doesn't, the stroller can't be safely ridden in and would need to be folded.

Post 6 is some basic information about DAS (Disability Access Service) for guests who have difficulty waiting in the regular lines. It includes information about the 'stroller as wheelchair tag' and a link to a post with more information.

Post 8 is about transportation, including parking, monorails and boats.

Posts 18-21 are about transfers and include information about which attractions have wheelchair accessible ride vehicles. Toy Story Midway Mania and the Kilmajari Safari have tie down straps, just like the buses and can be ridden in a wheelchair or transport ready special needs stroller.
If he is using a stroller, he might be sitting to low for some shows and would be better transferring to a theater seat.