Traveling with a Disabled Child (or Two!) by Elena Croy, Writer/Editor + National Down Syndrome Society DS Ambassador

Hope in her stroller at the USS Arizona Memorial, Honolulu, Hawaii.

I laugh a little when we pull off a major vacation, and staff or other families at our destination think it looks like we have it all together. To be honest, if we didn’t need a vacation from daily life, we certainly earned a vacation by the time we completed all of our prep for one! But when we get to where we’re going and can finally put our feet up and bear the fruit that comes from hours of meticulous planning, I know we made the right choice in getting away.

The start of summer dishes up different experiences for different families. For some, the end of June brings with it camp programs and extended school year commitments. (Extended school year, or ESY, typically runs for 4 to 6 weeks during the early summer weeks and is legally required to be offered by school districts for students who receive special education services who are at-risk for regression over the summer or who will struggle with skills recoupment at the start of the new school year; though on the flipside, families have the right to opt out.) For others, summer simply means the constraints of the school year are over and our days are ours to fill. Hope will only receive 8 days of ESY this year due to our vacation schedule, but as I’m writing this I’m sitting on our hotel balcony, listening to the waves crash in Waikiki during an unusually vibrant surf with the perfumed aroma of plumeria blooms wafting through the air, and I feel so happy with our decision to travel. 

Waikiki, Hawaii

For my milestone birthday and our 10th wedding anniversary, this year we decided to venture out to two Hawaiian islands for a couple of weeks. In the abstract, this seemed like a great idea, and I figured that if the kids could manage a 10-hour car ride to Ohio, they could certainly manage a 10-hour flight to Hawaii. Also, I found the idea of staying in the U.S. extremely appealing, from avoiding an additional stop in the airport at a customs agent booth, as would be required if we were traveling internationally, to having faith that my kids would generally be accepted for who they are in most spaces we visit. Though for better and for worse, we can’t control the people we encounter. 

While in Oahu, we chose to take some time to pay our respects at the USS Arizona Memorial at Pearl Harbor. Everything was going pretty well, but on the return ferry, a National Parks Service employee came on the loudspeaker to share some additional facts and stories. What he was saying, I couldn’t tell you, because the frequency hurt Hope’s ears so badly that she was screaming, covering her ears, and by the end of the short trip had tears streaming down her cheeks. We were doing everything we could to calm her, but she was in pain and she was scared, and the only thing that was going to make it better would be to dock. 

Many people were glancing over at us, which I would expect, but there was something different about the woman three rows up from where we were seated. She was visibly annoyed, unempathetic, and then crossed a line for me when she mouthed to the woman next to her, “That screaming is just so disrespectful.” Long story short, she received a lesson from me in that moment about disability that I do not think she will forget. 

As any family who has traveled with young children and any family who has struggled to travel with a child with a disability knows, you can’t just spontaneously plan a trip and go. I used to feel so burdened by the idea of traveling that going on vacation was just about moving all of our stuff to a new place, and it would be so much easier to simply stay home. But over the years, we’ve mastered a few tricks… 

First and foremost, we always consider how people with disabilities are treated at our intended destination. 

Are there accessibility laws, such as those we have in the U.S.? Are children with disabilities educated among their peers, or are they shut away and rarely seen in public spaces, or is it somewhere in between? This can affect how you navigate a mobility aid into a hotel or restaurant, or whether a babysitting/nannying service or hotel kids club supports your child. 

Layering the support of a 1:1 at family summer camp means Hope can safely join activities on the lake or after dark.

Speaking of kids' clubs, double up on support.

For us, this means scouting out a company at our destination that can provide someone to babysit for a few hours. We ended up hiring a registered behavior technician in Oahu to oversee the kids' dinner and safety in our room while my husband and I went out to a five-star, adult-only restaurant in the hotel. There is a kids' club at our hotel on the Big Island, which is great for my son, but my daughter needs a 1:1, so we hired a nanny through the hotel for an extra layer of support. And our most beloved annual family summer camp in Vermont reduces Hope’s daily rate, knowing that we are paying out of pocket the additional cost of a 1:1 for the week. But if taking a chance on a sitter you haven’t met feels too uneasy, we even have some close friends who bring their beloved home babysitter on their family vacations with them–Jamaica and Alaska and counting! 

Pre-boarding for a quiet jetway experience.

Get through security quickly!

Have you been procrastinating applying for that TSA PreCheck or Global Entry? I can’t speak to Global Entry, but the entire TSA PreCheck process only took us a few days from start to finish and gave us access to more security line options, allowing us to choose the fastest one. And if waiting in any line, long or short, is tough for your kiddo, buy that stroller you’ve been eyeing. Hope is too heavy for me to comfortably maneuver her around in a traditional stroller, so we upgraded to a Coche stroller and couldn’t be happier. I was so concerned that she would struggle with going back into a stroller after so many years without one, but she rode her chariot like a queen! Plus, she stayed off the floor and I never had to carry her, which, depending on fatigue level, can be a great, albeit a rather unwelcome airport workout for me! 

Sunflower lanyard attached to Hope’s backpack at the airport in St. Croix.

Sunflower lanyard on Hope’s new Coche stroller. 

Contact TSA Cares ahead of time, and grab a sunflower lanyard when you get to the airport.

I’m not sure if flight attendants are warm and kind to Hope because of her sweet smile or because she’s always rocking the sunflower lanyard, which is an internationally recognized symbol for people with invisible disabilities to receive additional support they might otherwise not get because they look like they don’t need any. Depending on how things are going for us in the airport, because she won’t wear it, I place the lanyard on a backpack or the stroller handle, then drape it over her tray table latch once we’re seated. 

Pre-boarding was helpful when we used to use these FAA-approved harnesses for the kids.

When pre-boarding begins, pre-board for heaven’s sake!

You are not displacing someone who “needs more” assistance, and you are not inconveniencing anyone when you pre-board your family. If walking in a crowded line through the jetway is an overwhelming experience for your child, or if you have special seating to arrange when you get to your seat, just go early. The ADA (Americans with Disabilities Act) prohibits anyone in the service industry from forcing disclosure of a disability in order to benefit from this type of accommodation. Alternatively, if sitting and waiting is hard for your child, board last and spend less time seated before the cabin doors close than is necessary. 

Prioritize sleep as much as you possibly can.

When Hope and Henry were younger, we always had to splurge on the biggest suite possible to make travel work for us. Each child needed their own space, so a second bedroom, an office area with a door, or even an oversized closet all served well for pack-and-plays or inflatable mattresses, though these larger accommodations most certainly drove up the cost of our trips. More recently, we’ve completely swung the pendulum to smaller rooms due to at least one of our children’s acute (hopefully) fears of sleeping alone. And if your child uses a sleep aid, such as a white noise machine or a supplement such as melatonin, pack it. Friends of ours even used a blowup cube to place between their child’s seat and the seat in front of him to create a little bed on their flight to Italy when he was younger. Creative! 

Get those medications filled early! 

I always travel with redundancies to prescription medications, and always with the original containers that include my child’s name, the prescribing physician, date medication was filled, and description of the pills. I travel with them in my carry-on when we fly, but I also keep some in our luggage in case something happens. One of her medications is taken twice a day, so there’s little room for error. Recently, I had trouble filling a 30-day supply early, but when I explained to the pharmacy that we would run out while we were away, the technician requested a “vacation supply” from our insurance company, and it was automatically approved. You may also benefit from switching 30-day supplies to 90-day supplies, though timing can be tricky there, too, so keep an eye on refill dates. 

Kisses at the hotel.

Practice, practice, practice!

This can mean via social stories or with tools you may use on a plane that you don’t use elsewhere, such as headphones. This can also mean booking an overnight stay at a local hotel to see how your child reacts to a change in routine and sleeping in a bed outside of your home. 

Know where you’ll go in case of an emergency.

Think: an undisclosed peanut exposure at a hotel restaurant or a change in activity level that impacts blood sugar. When we went to St. Croix recently, we stayed (by chance) near the best hospital on the island, but I learned through some research ahead of our trip that major medical emergencies could require transfer to St. Thomas by boat. 

Weigh the pros and cons of driving versus flying. 

Most of our earlier vacations involved car rides, including very long ones that took up an entire day, for the convenience of loading up the car with all of the preferred items that would make the vacation itself more enjoyable, such as pack-and-plays, clunky toys, puddle jumpers, snacks, and so on. When driving, you also have more control over mobility aids and medical equipment, and bonus: you’re the only ones handling the devices, so no worries about damage during handling. (See Airline Passengers with Disabilities Bill of Rights.) Flying often involves having to make unappealing decisions, like in our case, forgoing a few nonessential items in order to fit my son’s scoliosis brace. 

No matter what you do to prepare, there will always be people around who don’t understand your family. Some will want to learn; others may try to get in your way, like what happened to us at the USS Arizona Memorial. Just keep living your life, and keep trying until you figure things out. 

Aloha!

Elena Croy with Hope + Henry | At Her Own Pace

Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children. She and her husband are raising their little girl, who has Down syndrome, and their son, who was born with upper limb differences, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com. Elena is proud to serve as a grassroots Down syndrome advocate for the National Down Syndrome Society.