(Don’t have time to read the whole post? Check out my list of tips at the end!)
We lasted 12 years without taking our kids to Orlando. But this was finally our year to bring them to Universal Studios and Disney World. However, three out of four of us have Ehlers-Danlos Syndrome (EDS). I didn’t know how to vacation with a disability: was this kind of a trip even possible for us? Yes.
I did a lot of research, made some good guesses, and a few mistakes. But I’m going to show you how to vacation with a disability (or at least, how we did it.) I started out by searching for blogs on “how to vacation with a disability” or “traveling with a handicap,” and was shocked when I came up empty-handed. I was on my own (for now.)
The biggest hurdle was going to be ambulation: we can’t walk long distances. I learned about this awesome travel wheelchair.
It is so light, it can be carried on an able-bodied shoulder, and put on the over-sized luggage carousel on the plane. A few things:
- It won’t go on the same carousel as your other bags; keep that in mind when going to baggage claim.
- Have them put a fragile sticker on it.
- Cut an old credit card in half, wrap several feet of Gorilla Tape or Duck Tape around it, and slip it in the chair’s carrying case. The bag is fragile, and it tears easily. The tape is a great fix in a jam.
- The chair has nuts and bolts that can come loose in the middle of your trip, (especially in places with bumpy or cobble stoned paths) so carry the small tool set it comes with at all times. We had no such problem with it, but our friends have.
However, this was one chair that needs to be pushed by an able-bodied walker, and we have three people who need assistance.
I needed to rent a motorized scooter. To rent one from the theme park, (and almost every place, I am learning) a person must be 18 years or older, and only that adult can be on that scooter. (WTF, world? Kids are disabled too…) So, I couldn’t drive it and put my 9 year-old son on it with me, or the security guards would tell him to get off. We decided to rent from an outside company, because they would not be there to police our activity. Ambulation problem solved!
We stayed in a Universal resort that granted us early park admission and express passes for all but the most popular rides. Being right next to the theme park was essential on the day that my son and I needed to go back and nap, and my daughter and husband wanted to stay and tackle an advanced coaster. I called the hotel the day before we arrived, was reassured that there was space for my scooter outside of my room, and was assigned the room next to the elevator so we didn’t have to travel long hallways.
Overall, it was a great vacation, but there were several learning moments along the way.
Lessons Learned #1 – Always Make Plans (But Know the Plans Will Change): I planned every-other-day park trips so we could rest in between the long week that we were there. And then due to several unforeseen issues, we had to switch around our park days and ended up getting only one day to recharge. Also, the weather projected to be between to 50s-70s, but it was really cold much of the time we were there. A word of advice: make sure your warmest outfit is a neutral color. Around the fifth day in a row that I pulled my dirty aqua sweats out, I fantasized about burning them.
Lessons Learned #2 – Ask ALL The Questions: On the day we were scheduled to visit the Magic Kingdom, I didn’t realize that our resort didn’t have a free shuttle over to Disney. (Lots of people had told me that “everyone does,” and I had neglected to ask my hotel if they do. Rookie mistake.) Because of the scooter, we now needed to call an ADA taxi to drive us there (for $100 round trip). I had previously booked a dinner reservation over at Disney Springs for that evening. The taxi driver said that it might be “very difficult” for the return driver to find us, given that Disney Springs was under a lot of construction. I was sufficiently spooked.
When my new friend and now new travel agent Kristy Durso, who had just started helping me tweak my trip, texted me that she had found a coveted dinner reservation at Chef Mickey, I jumped at the chance and cancelled our other booking. My kids had a blast, having never had the chance to get up close and personal with these characters before. But dinner wasn’t until 8:00 pm, and sadly for me, this was all too much, having set out at 7:30 am. I am still only three months post brain surgery, and I was in full-blown migraine by this point and couldn’t eat. Had our day been better coordinated in advance, this wouldn’t have happened.
Lesson Learned #3 – Your Family is Not Like Everyone Else: I got a lot of great advice from people over the planning months, the thing is, we are not like other people. For example, people love the dining plan. I was told that if I did the “extended service dining plan” for the days that we were in the park, I would save a lot of money (about 20-30%). However, we have gastroparesis, and just don’t eat that much. We ended up leaving with credit still on our account. (It rolls over from day to day, but not from trip to trip.) That is an area where I could have definitely saved money. So, take people’s advice with a grain of salt when they tell you what you “have to do.” Ask probing follow up questions about why they liked things.
Lessons Learned #4 – You Will Forget Things: No matter how much I think that I know our bodies by now, and know how to pack all of the “what-ifs,” I still manage to forget at least one or two major things each vacation. It’s important that you remember that when you travel, you are not going to be in your routine. Whether or not you think you have a routine, you do. And when you spend long days in an airport, sleeping in a different bed, walking more or less than normal, using a different pillow, eating different food, drinking different water, less water, all of these factors contribute to the chronic body freaking out. For example, when I leave my home, I am more prone to headaches and constipation, (which is already a chronic issue for most EDS people.) Eventually you will get to know yourself and your family’s needs when you are on the road, but in the meantime, try to at least remember the medications you won’t be able to buy at a pharmacy. Make a packing list that you can use for any trip.
Lesson Learned #5 – Two words – Travel Agent: I mentioned my friend Kristy started helping me about a week before we left. Unfortunately for me, I didn’t meet her until months into my planning. But she is an EDS Mom, mother of an EDS kid, an autistic kid, and has food allergies in her family. Booking travel for people with special needs is her super power! (Please note, I am not receiving any compensation for telling you about Kristy. I just think she is wonderful, and I wish I had known about her a long time ago.)
In just one 30 minute period of sitting down with her over coffee, she: bought my Magic Kingdom passes, set up our three Fast Passes, made sure that my reservations were all linked, which, they weren’t and required getting on the phone with Disney, gave me her list of what not to miss in Harry Potter, and answered about 50 questions. Also, she got us the reservation at Chef Mickey the day we were at Disney, and when Storm Jonas was threatening the last day of our trip and forced us to cut it a day short, she was texting me reassuringly that no matter where we were stranded, she would find us a hotel. I was not worried, because I knew she had our back, and keeping a chronic Mom out of the Xanax Zone is an invaluable service, indeed. And all of that cost me…NOTHING! I don’t pay her. In fact I SAVED money by using her. Please understand that travel agents get paid by the companies that you use, even when you get a great deal. That’s their job.
Next time we travel, I will be using her from the start, and I know that I will be saving myself precious time, energy, money, and more “lessons learned.” All of the issues that I had with overspending on food, misfiring on restaurant reservations and whatnot could have been avoided by using her eagle eye on my plans. It’s OK, my “lessons learned” are your “wisdom gained.” (NOTE: We did go back to Universal in February of 2018. I had Kristy plan everything. It was a totally different experience! I’m never planning my own trips again…)
ADA-Friendly: First and foremost, the people who work for these parks are trained to interact with all kinds of guests, including people with disabilities and assistive devices. I have to say, when on a scooter in public at home, I feel invisible. When I was at Universal, I felt like a person to all of those employees. (I get kind of choked up about it, actually.) The staff looked us in the eye, talked to us very personably, remembered our names – it was easy with my daughter in full Hufflepuff uniform – she got a lot of attention! They even made jokes about our wheels, which I LOVED! Also, getting around on the scooter was very easy: all of the resorts, water taxis, monorails, even the Hogwarts express have the ability to handle you and your assistive device with ease and dignity.
Dealing with Lines: We went to Guest Services our first day at Universal, and got a “Disability Pass” which allowed us to get in a special shorter line or to get a return time on any ride with a wait time over 30 minutes, so we didn’t have to stand in a long line. (NOTE: As of February 2018, there is still a confusion among the staff about how to handle disabled guests – do we or don’t we need a pass? Do we go through the line with everyone else or get to bypass the line. You will hear both. Kristy is working with Guest Services to make them get their story straight.)
If there was less than a 30-minute wait, we got in a special line and bypassed most of the line to get to elevators through Gringotts and Hogwarts, (though you will miss seeing part of the castle). My son and I would park the scooter in pram parking and walk onto a ride, but we would push our daughter in her chair on the ride, (which was great for me, because the chair acted like a walker). Also, for those of you traveling with young or very disabled family members, Universal has a “child swap” section on their rides, so that you can bring the baby or sibling all the way through with you to the loading dock where one parent can wait while the other one rides, and then swap them out, so that the person doesn’t have to wait in line again. It’s brilliant, and even though it’s right on the Universal website and app, we didn’t figure it out until a few hours into our first day. You’re welcome! Disney does not have a formal “Disability Pass” as most of their rides are wheelchair accessible. At Space mountain, we got a “return time” just like we did with the “Disability Pass” at Universal.
THE LIST – Things to Help Make Your Trip a Success:
- Use a travel agent that understands your family’s unique needs. To reach Kristy Durso, email her at firstname.lastname@example.org
- Choose wheelchair accessible locations and ADA-friendly staff.
- Ask ahead of time about motor scooter rental policy, and choose an outside company if necessary, so theme parks won’t be legally compelled to kick disabled children off your scooter.
- Travel during non-peak season to minimize crowds. Lots of people make moving with mobility aids pretty stressful.
- Choose a resort that is close to the park so you can go back and rest if you need to.
- Call before you arrive and ask for a room near the elevator, as well as relay other details about your needs.
- Stay on top of the weather, and pack appropriate, neutral clothes, comfortable shoes, hats, gloves, etc.
- Bring pain control: TENS unit, Kinesiology tape, rescue medication, braces, nausea medication (for 3D rides), etc., and other medications for symptom relief (wink).
- Poll friends who have been to the parks about which rides are “hard on the neck,” so if you have issues like POTS or cervical instability, you know which ones to avoid.
- Drink enough water AND EAT SALT! You can bring water and food into Universal and Disney parks, which is awesome for people with food allergies.
- Alternate park and recovery days. (Well, I tried to do that…)
- Visit Guest Services to get Disability Access Passes, if applicable, and identify where the First Aid stations are before you start your day. Call ahead to the park to see if this is necessary so you don’t waste time (I’m lookin’ at YOU Universal…)
- Find quiet places to sit and rest during the day. You will see people all over with napping children – everyone is exhausted!
I hope this post inspires you to plan a trip that you didn’t think was possible. And if you are a seasoned vacationer who deals with special needs on the go, please share your tips in the comments section!
(Please note, I am not a medical professional. I do not diagnose or treat problems. If you have any serious medical concerns, seek the attention of a professional.)