Experience with PMD at WDW?

Joined
Oct 16, 2016
Messages
13
Has anyone had experience taking a younger boy to WDW that has PMD (Pelizaeus-Merzbacher disease)? My nephew is currently 2 years old and has PMD. I want to start planning a trip for him but wanted to see if anyone out there has had some experience with the challenges I might have and how I might create a great experience for him. I have done all the basic reading up on accessibility and transportation. I am looking for anyone with perspective on what he would like best or experience with other boys with PMD and what they liked. Any and all suggestions, stories and perspectives are greatly appreciated!
 
Do you mind telling us how his PMD affects him?

And (more importantly) what age will he be when you all go to WDW?

That way, maybe we can offer some really concrete ideas for you to incorporate into your planning! :)
 
disney dose offer stroller as a wheel chair so that ( I do believe most of not all children with PMD have a hard time walking or can not walk) so that you can take his stroller in line with you. I am not too familiar with PMD so I can not really tell you much more.

you are welcome to go to GR and talk to them but like us they are not DR so telling theme has PMD say nothing you will need to think of what he needs in line to make it easer for him
 
Mamabunny, He has Classic PMD so is currently able to stand on his own and move by himself while holding objects or with assistance from a person but can not do it very long. He can crawl well but most likely he will not ever walk on his own. He has the specialized wheel chair that we can adjust to make him comfortable. At his current age getting him in and out of appropriate rides should not pose an issue but as he gets bigger it could. I would like to take him in the next couple years 3,4 but will try to take him several times through his childhood. Like other little boys with PMD we are seeing cognitive delays but do not know yet where he will fall in this area. I hope this helps a little and thanks to each of you for the posts.
 

I would recommend taking him to the local zoo amusement park or even a crowded mall, may be if your town has a 4 of July event ( since you are not planing with in a year) and see how he dose dose he have problem there that he is having a hard time with. this will give you some idea of what he might need. but it sound like he will need a wheel chair or a tag for his stroller
 
@gap2368 has a good starting strategy - by taking him to local venues (like the zoo, State/County Fair, busy stores/malls, festivals, etc.) you can help acclimate him to some of the conditions that he will encounter at WDW. Just practicing staying seated is a great place to start. If he gets "rabbit fever" and hops out of his chair at WDW, he could easily get bowled over by another Guest who wasn't expecting him to jump out of the chair.

Since he has his own chair, you don't have to worry about getting the "stroller as a wheelchair" tag at Guest Relations. If you decide to ask for a DAS for him, remember that you will focus on WHAT his symptoms are and HOW the DAS helps him in the Parks, NOT the diagnosis. There's *tons* of DAS-related threads here; go to the top right corner of any page and type in DAS next to that magnifying glass in the "search" box! :) And don't forget to use the resources that Sue and the other mods have "pinned" to the top of this forum's main page - there's a *lot* of good information there for you.

Don't worry too much about what rides, attractions and shows to do or not do - unless you have a specific issue (for example, strobe lights cause seizures, or claustrophobia causes a catastrophic reaction, etc.) everything at WDW is made to be enjoyed by people of all ages. It's still amazing to me - the first time I went to WDW was in July 1972, at the age of 12. As a kid, I saw the Magic Kingdom through completely different eyes than my parents did. If you had asked our family about just one ride afterward, my brother and I would have had an entirely different experience than our parents did! And that's OK; it's meant to be that way!

If I was going to say "avoid anything", it would probably be things like Hall of Presidents & Carousel of Progress at MK, or American Adventure at Epcot. Those kinds of shows aren't going to be as interesting or visually stimulating for him, and let's face it... a stage full of Animatronic Presidents is a great place for adults to sit and cool off on a hot day... but most likely a form of torture for wiggly little guys (and girls!)

You - his family - knows him better than anyone in the world. If he gets overstimulated easily, then plan your days with breaks at the Resort hotel, and don't pick an over-themed room so that everyone has a visual "break" from all the Disney-ness. If visual stimulation isn't a problem, but auditory issues are (too much sound, crowd noise, sudden noises, fireworks, etc.) then practice wearing some of the headphones or ear plugs that others here have found for their kids. If he has any touch issues - fabric sensitivities, or texture issues, you may want to consider how to mitigate those, especially for the fur character meet-n-greets.

If he's one of those kids that is just like a sponge - he will soak it all up as long as someone can keep up with him - then start by showing him some YouTube videos that people have posted of rides, attractions and shows. Frequently remind him that there will be LOTS of people who want to meet Mickey Mouse and all the other characters, so we have wait our turn! At his age, don't overwhelm him, but maybe show him one video a day, but let him watch it several times so that he gets a chance to really learn and absorb what he will see when you are there. Don't worry about ruining the trip; lots of kids do better if they know what to expect before they ride Peter Pan or 7DMT!

The main thing I would NOT do to prepare him (or any other family member, for that matter) is to show him Disney's own videos. In their marketing materials, it looks like the Parks are not at all crowded... everyone gets a front-row spot for everything! And we never see anyone pay for any of the food, drink, or souvenirs that the family is happily consuming. Disney produces beautiful, heartfelt marketing... but it bears no resemblance to the reality you will encounter.

Last but not least, please don't despair if you get there, and it seems like all he wants to do is ride the same few things over and over, and eat the same foods over and over. That's OK! If that's the *worst* thing that happens - you are still at Disney World! Take your lead from him, and try to see WDW through his eyes, and you'll both find the Magic!
 











Receive up to $1,000 in Onboard Credit and a Gift Basket!
That’s right — when you book your Disney Cruise with Dreams Unlimited Travel, you’ll receive incredible shipboard credits to spend during your vacation!
CLICK HERE











DIS Facebook DIS youtube DIS Instagram DIS Pinterest DIS Tiktok DIS Twitter DIS Bluesky

Back
Top