Colwyn signs “airplane” and says “Mexico.”
I say, “Oh nope, we are going on a road trip this summer or camping.”
In my head I curse myself for having introduced this whole travel thing when he was wee, because now we are trying to not fly. Not go to Mexico, preserve the planet by taking fewer flights. But Colwyn, he loves airplanes and family vacations, swimming pools, the beach, buffets, meeting cousins, hotels. He loves it all—to a point.
Colwyn has Prader-Willi Syndrome (PWS) and Autism Spectrum Disorder, he’s relatively nonverbal and as he gets bigger is beginning to explore his independence. Born with low muscle tone, he’s come a long way but still fatigues easily, especially in heat and surrounded by chaos and people.
He likes to travel, though he also feels homesick after about two or so weeks, at which point he begins to count down the days. He likes routine but is okay with small adjustments to it. He’s an awesome travelling companion, who needs a few things put in place.
There are always epic failures, but here are my Top 10 Tips for travelling with a special needs kid:
1. Know what your kid needs and likes.
When Colwyn was a baby, with low tone, our team at the Queen Alexandra Hospital made a memory foam mattress that fit in my suitcase and doubled as a bed for his first trip to the UK and Italy. He grew out of the suitcase while we travelled but fit nicely into a drawer. When he was four, we went on a cross-country camping trip. Though everyone said we’d get to Kamloops in a day, it took us three with stops for bush pees, short hikes, snacks in cafes, and explorations of small towns. A few years ago the whole family (grandparents, aunty, cousins) went to Disneyland. We decided, after much deliberation (the cost!), to stay at the Disneyland hotel so that we could enter the park in the morning but return to the hotel easily for swims, reading and quiet time. Last summer, we rented a car rather than travel by train to provide that necessary down time in an enclosed, private but moving space.
2. Ease anxiety.
One way to ease anxiety is to travel to smaller airports—this tip comes from a friend whose daughter startles and fears sudden loud noises and actions, but smaller airports lessen the possibility of these occurrences. When visiting California, they fly into Oakland and use the hotel shuttle service to get to the hotel fast, have a rest and swim, and use the shuttle service to then send one of the adults to get the rental car. This relieves a ton of early-travel woe. At airport check in you can also be flagged to fast-track customs and security, shortening time in lines. Also, pack lots of distractions. For flying we take ear plugs, calmness pills, snacks, a back-up device in case his iPad goes kaput, books, colouring, fiddles, chewlery, mints, gum and Garfield, which serves as cuddle, pillow, companion, rock. And us, for lying on, holding hands with, low quiet conversations, singing of songs, hands over ears, and reminders to yawn when his ears hurt during landing.
One family I spoke with takes opportunities at Victoria Airport, when it is quiet, to practice going through the full security check with their son. This way, he’ll have done it a few times when his number does randomly come up, and hopefully will go through the procedure easily.
Recently a friend told me that her 23-year-old British niece is coming to visit. Her niece is visually impaired and has autism. She has a loud voice. To prepare her for the flight from Heathrow to Vancouver they took a weekend trip to Scotland when my friend was visiting England. As a blind person, the sensation of take off and flying was immense. The presentation by the flight attendants on safety made her wonder if they were going to crash. The ear popping during the landing was tremendous—she wondered if she’d go deaf. Once flying, she relaxed, and said, “We are flying!” and all the passengers clapped!
We have had a family goal of going on an overnight hiking trip, so every weekend we practice hiking, and lengthening the distance Colwyn can go. He carries a pack sometimes, we take snacks and meander on these practice walks, slowly working our way toward a hiking vacation.
4. Use services.
Airports have wheelchair and golf cart services to get you to your gate quickly and easily. If your child’s anxiety is on the rise, don’t be shy to use these services. We learned this as our parents aged and needed more support. In fact, my father-in-law was taken from our hotel in Puerto Vallarta, all the way through to the airplane with assistance at no extra charge. Disneyland offers a wide range of support for people with diverse needs. We could gain quick access to rides, had a wheelchair for my mom (which Colwyn sometimes talked her out of for his turn) and more (disneyland.disney.go.com/en-ca/guest-services/guests-with-disabilities/). I had a major Aha! moment in Chester Cathedral where we were seated down a narrow, dead-end aisle in a packed cathedral with a fidgety, chatty, ready to howl kiddo with no way to get out. We were all on the verge of panic. He finally fell asleep (jetlag) before the play began, but we still envisioned having to climb over people to escape. I had seen people seated in accessible seating on the floor below, and will remember to ask next time.
5. Have back ups for your back-up plans.
This could also be a reminder to be flexible. Now which anecdote to share? That time Colwyn silenced the entire Maui airport at midnight with an epic scream or that time we cancelled our booking in London and stayed on with friends in Oxford because he was finished with crowds and heat and I could not fathom how we’d cope with the train, subway, dragging our luggage and him through London? Hmm. Maybe you get the picture?
6. Plan rest days.
Allow for days when you don’t have anything on or where you take it slow. For Colwyn this is especially important if it is hot. I longed to do a short walk between two small villages in England, carrying all we needed for an overnight. We picked a trail near Bath and started at a café near the canal with drinks and conversations, relaxing into the day. We budgeted all day to go the eight kilometers. For much of the way, Colwyn wondered why we weren’t going back to the car. On arrival, we split the party, Colwyn and dad napped in a field while I found accommodation.
7. Keep it light.
On another trip, after being on the road for over two weeks, we arrived in Whitehorse ready for a few nights in a hotel. Colwyn had picked up some unusual habits, such as pressing his nose to people. We were working on diverting this behaviour, and a bit tense about it. In the elevator, Colwyn leaned toward a biker in a leather jacket and pressed his nose to the man. “Sheesh,” he said, “Do I smell bad? I’ve been on the road a while.” We laughed, and quickly explained. To which the biker gave a shy grin and a fist punch to Colwyn’s happy stomping reply. We may not always know how Colwyn will react to new things, or experiences or people. Often, he is curious, mostly he has no filter, so whatever he is thinking, happens. Our job is to roll with it or to anticipate—usually he surprised us.
8. Go with the flow—with behaviours.
Try not to be too embarrassed. On our trip to England last summer, we were in a lot of pubs with cousins. Colwyn loved meeting his cousins. He also touched their food and took to howling like a wolf, especially when the mood at the table shifted, when people were getting ready to leave. Though non-verbal, he wanted to be a part of the energy, so he’d howl. “Oh, he’s fine,” my cousin John said on several occasions. “It’s noisy in here already.”
9. Don’t not travel.
We have had the luxury and privilege to do a fair amount of travel, often with our extended family. Before Colwyn was born and spent his first three weeks in the Neonatal Intensive Care Unit at Victoria General, we’d already been discussing a trip to England and Italy. My parents were on board. Everything paused or fell away when Colwyn was born. He was finally home and began feeding from a bottle, so we looked at the dates again, sat at our kitchen table, and called my parents. Four adults and one new baby…surely we could do it.
10. Make memories.
I find that kids and parents enjoy a trip best if you talk it up before and continue afterward. Sure, there may have been a few near-disasters—that time our boat stopped working in the middle of Shuswap Lake—but we swam every day and played games and it was great. Framing the trip both before and after makes a difference in how it is remembered. For Colwyn, we make Pictello stories on his iPad, which he reads over and over. I try to make photo books as well through Mix Book or other online companies. He reads these books, and they reinforce his love of family, adventure and travel, leading sometimes to a day of constant, “I want to go by airplane to Mexico” while he signs “airplane” and I shake my head.
Yvonne Blomer is a Victoria writer and the past Poet Laureate of Victoria. Her most recent books are Sugar Ride: Cycling from Hanoi to Kuala Lumpur and Regugium: Poems for the Pacific.