Visiting Disney World with a Child with Special Needs Part 1

This is the first part of a two-part article.

We chose to go to Disney World because it should be easy. Vacations are a bit tough for our family. We haven’t been on one in over two years.

My husband and I have three children, ages 6, 4, and 2. The 4-year-old, whom I will call James, has a chromosomal disorder. As a result, he has severe psychomotor and cognitive disabilities. He is fed via a feeding tube. So we wanted a vacation where everything was, quite simply, as easy on us as possible. A place where disabilities where easily accommodated, a place that’s good for kids. So. Disney World, ho!

I’m assuming, given Disney’s concern for the bottom line and the massiveness of this operation, that their accommodations of disabilities is profitable. I wonder why other businesses don’t follow suit.

In planning the trip, I admit I was lazy. I started Googling, and there were just reams and reams of webpages offering advice, admonitions, etc. Overwhelmed, I took a shortcut and called their travel agency to explain what we need. That is, wheelchair accessible, on the monorail line (so we could just pop James in without removing him from his wheelchair and return easily for naps), a suite with a bedroom door that closes – kids sleep in the living room. The guy was amazingly friendly and cheerful in helping us find something accommodating, although it was far more expensive than I thought it would be. So we kept in budget by driving rather than flying. When we arrived, I was surprised to find a ginormous suite with Bosch appliances, in-room washer/dryer, and a seriously gorgeous bathroom that is larger than my first New York City apartment. I now realize we are in the most expensive Disney resort. Ah. Still (mostly) happy with the choice. Except when we didn’t have hot water this morning. Spending lots of money makes you far more outraged at life’s little inconveniences.

The hotel’s aesthetic seems to veer between Victorian and the 1920s. There are Victorian dormers and turrets, and our room contains oval-framed silhouettes of Mickey and Minnie. Yet the music playing is strictly 1920s, and the staff wear 1920s style clothes. The overall effect is a bit less Olde Timey Nostalgia and more The Shining. I am happy to report that elevators, however, remain bloodless.

Other planning issues went…not so well. When I received our itinerary, I realized we were paying for a meal plan for James. Who, you will recall, does not in fact eat table food. I called their main number and spoke to one person who told me that we could not take him off the meal plan. But, she suggested helpfully, I could use his meal tickets for merchandise. I deeply, sincerely, do not want lots of crappy Disney merchandise (although I have already been suckered into several pairs of mouse ears and a seizure-inducing light-up bubble gun). So I fired off an email saying that I think it is ridiculous to pay for food for someone who does not actually eat. I received an apologetic phone call saying that they can’t take him off the meal plan “because it’s in the computer,” but in this special case, they will let me exchange any unused meal credits for a refund. She noted, however, that his food total was only a little over $100 out of a massive bill. Which, I feel (and she – to her credit – acknowledged) is not the point. Did it need to be brought up, then?

When I had spoken to the initial super-friendly amazing booking agent, I had asked what to do about disability accommodations at the parks. I was told just to speak to Guest Relations when I arrived. I knew certain rules had recently changed, and I wanted a better idea beforehand, though, so I called their Disability Services hotline. The woman who answered treated me with deep suspicion. (Disney? Seriously? You have, shall we say, inconsistent service in the phone department.) She said that they had “no accommodations” for people with wheelchairs. Which seemed a bit odd, since I already knew that, say, many rides have parts that can be modified to allow him to stay in his wheelchair. And now that I’m here, I notice that there are, in fact, ramps. And curb cuts. Among many other basic wheelchair accommodations. She further said that the only thing that would “work” to get accommodations (which seemed in her mind entirely a matter of skipping ahead in lines) was that my son was cognitively disabled. His motor disabilities are, apparently, simply useless. Useless! She said (correctly in this one case) that we can get a Disability Access Card. For rides with waits longer than 30 minutes, we can get an assigned time to return. “He’s gotta be one of the people going on the ride, though,” she said warningly. Nuh-uh, for realz?! I mentioned that I had heard that if a ride cannot accommodate a disabled child, one parent can wait with him while the other rides, and then they switch without waiting on line again. “No, you can’t do that. It’s just the assigned time now.” As I have learned since arriving, one can indeed ride switch. (Which is a nice accommodation, thanks!)

Here is what is most surprising at Disney so far: many, many, many people come without children. And many of those folks seem a bit annoyed about being adjacent to child-like behavior. Which is a little odd. I mean, it’s Disney World. It’s not Alinea. A childless couple’s desire to come to Disney without children escapes me, but hey, whatever floats your boat. Every vacation spot has its drawbacks, however, and I think at Disney World, one might expect that a major drawback would be the presence of children.

Today marks the halfway point of our trip. So far, so good. Well, our two-year-old bolts toward something dangerous whenever possible and bursts into hysterics on many rides and all monorails. But other than that, very nice. There are, in fact, many many accommodations for James. Even for his motor disabilities! There are maps of parks which list all the access information for each ride: whether he can stay in his wheelchair, whether he must transfer from the wheelchair (possible but not preferable). It really makes things much easier for us. Most of the staff in hotels and parks reach out to say hello to James as well as my other children. This is very very rare. At most businesses, he is ignored. Perhaps “ignored” is not quite the right word. Rather, people are too uncomfortable and afraid of staring or saying the wrong thing to engage with him. But at Disney, even more pleasingly, the staff wait for a response! For James, as with many children with cognitive/motor disabilities, there’s often a bit of lag time in his sign language responses, as messages don’t so much rush around his brain as mosey and meander about. Still more pleasingly, when he signs “thank you,” they always recognize it and sign, “you’re welcome.” To see my son interacting with strangers is unbearably moving to me, and whatever flaws Disney World has, I am very very grateful for the opportunity.

There are many kids with disabilities here; many with disabilities as severe or more severe than my child’s. I am utterly, entirely, unused to this in any situation except the annual conference for families with my kid’s syndrome. So this is nice, too. People are not staring, they’re not even doing the quick-looking-away thing. He’s just another kid in a wheelchair. At one point, James suddenly grabbed the arm of the ride operator who was strapping in his wheelchair. I apologized, and the guy laughed and said it happens to him a million times a day. James loves loves loves rides that spin or make sudden quick jerks. Forgive me the cliche: seeing his grin really does make this all worth it.

The people in the character costumes made a particular point of lavishing affection on James. He was just blown away by this. He was giggling and kissing them and holding their hands. They were extremely patient and kind with him (special props to Eeyore, whom I suspect James tried to French kiss). How could I not be so happy when seeing my kid so happy and finally getting affectionate attention from strangers? One thorn on this rose, however: I did notice they paid relatively less attention to my typical kids. It was subtle, and I’m not sure my typical kids noticed it. But that does seem one of the downsides of having a sibling with a disability, however minor.

In general, I consider myself genuinely lucky to have James. My life is better with him in it. I mean, with him as-is. I would “cure” him for his sake, but not for my own. There is, however, with one major caveat. Having a child with a disability is not the whorling vortex of darkness and despair that I believed it to be when we first got his diagnosis. It’s really more of an everyday sort of pain in the ass. I often think to myself how much easier everything would be if only most families had a kid with similar disabilities. Cars would come with standardly optional wheelchair ramps. Or car seats that fit big kids. I mean, you can get this stuff now, it’s just horribly expensive, ugly, and thoughtlessly designed. Pediatric wheelchairs would be as well-designed and easy-to-use as strollers are. Diapers would come in all sizes. Shopping carts could accommodate bigger kids. Etc. etc.

Disney is not that world, of course. But it is something closer to it than I have yet experienced.