Special-needs travel

B.C. (before children), my husband, Jack, and I quit our jobs and backpacked around the world for eleven wild and wonderful months. Becoming parents did little to lessen our travel lust. Over the years, we’ve taken our two daughters camping, cottaging, hiking, cruising and flying. Since our youngest, now 18, has autism, we’ve dealt with bumps along our journeys—especially when Talia was younger. On airplane flights, she often screamed inconsolably. And one summer day, high on a Vermont mountain chairlift, Talia panicked, struggled out of our arms and almost plummeted to the earth. But what we remember most are the beautiful moments: whitewater rafting through a Colorado canyon, horseback riding on mountain trails, and silently watching the sun set over loon-filled lakes.

With extreme planning, creativity and a sense of humour, families like ours have amazing adventures. Below, parents of kids with various special needs share their sweetest travel tales.

Flying to a far destination

One month before their Italy adventure, Katharine Harrison of Toronto gave her son Max (then 11) an Italian phrase book. Because of a congenital birth defect, Max has spinal damage. Although he walks with the help of canes and braces, he tires easily, so a wheelchair works best for longer distances and travel. “I told him he’d be our guide,” she says. On the trip, he expertly ordered pizza on the piazza and asked locals for the nearest loo. With a rented car, the two explored the countryside, visited little towns and dined at outdoor cafés. “He loved being part of a funky, different kind of world,” says Harrison.

Not that their European adventure was glitch free. At the car rental agency, they waited three hours to find a vehicle to accommodate Max’s wheelchair. And the cobblestone streets, though quaint, made pushing and riding in a wheelchair exhausting. “Budget extra for taxis,” advises Harrison.

Helpful tips:

• For extra help and advice, use a travel agent rather than booking online. • “Don’t be a surprise at the airport,” says Harrison. When reserving, explain you’re travelling with someone who uses a wheelchair (or has special needs). • Ask staff if you can join a shorter line at the airport. • Bring a photocopy of your child’s health binder, with doctors, medical history and hospital discharge summaries, advises Sarah Watt of Guelph, Ont. Her son, Ben, seven, has Hirschsprung’s disease and has an ileostomy—a surgical opening in the small intestine leading outside the body. Ben wears an ileostomy bag that collects stool and must be drained, cleaned and changed often. For a two-week European trip, she packed two months of medical supplies, and still ran out. Now before travelling, Watt researches online where they can buy medical supplies at their destination. She also suggests carrying a description of your child’s conditions written in the country’s language. • For a long flight, ask your doctor if your child could use medication to keep calm, suggests Pauline Busby of Guelph, Ont. “Be sure to test the meds before you leave,” she cautions. When her son Aidan (who has an intellectual disability, autism and cerebral palsy) was eight, they travelled to Australia to visit family. On the flight, Aidan had an adverse reaction to the meds, becoming “hyper and agitated.”

Going to the beach

Mexico was a mecca of fun for Cathy Smith, her husband, Kevin, and son Adam, 13, from Toronto. Initially, Smith was apprehensive since Adam has a developmental disability and a seizure disorder requiring ongoing medical care. “I went online and staked out all the medical facilities in the area,” she says. She also made sure there was a doctor on call 24/7. Happily, Puerto Vallarta proved to be wheelchair accessible, with ramps on every sidewalk. For a downtown sightseeing trip, a van large enough for Adam’s wheelchair picked them up at their resort. “The locals were really welcoming,” says Smith. When the family wanted to visit a second-floor restaurant, two waiters lifted Adam up the flight of stairs. “They even brought out a special salsa just for him,” she says. “He loved the food—especially the enchiladas.”

As well as the food, Adam relished his time at the pool and beach. “He’s in his element in the water,” says Smith. Favourite trip memories include a beach day, complete with professional family seaside photos and fireworks over the water. Somehow, sun and sand vacations work miracles on Adam. “He always seems more relaxed and has fewer seizures when we’re away,” says Smith. And the seizures lessen for a while when they return. Their next travel plans? “We’re thinking of England.”

Helpful tips:

• Go online to research weather and your destination. Will your child need special sunscreen? Food from home? Check the accessibility of your hotel, transportation and sidewalks. • The concierge at most resorts can arrange for private babysitting. Call ahead to see if they have experience with children with special needs. Some all-inclusive beach resorts have one-on-one nannies. Ask if you can hire a nanny for a weekly flat fee. • If your child is high-need, consider bringing your child’s caregiver from home. To get a break on vacation, Smith and her husband took turns being with their son. “Next time, I might bring a caregiver with us,” she says. • To increase your child’s independence in the water, consider buying a life jacket (about $200) designed for people with special needs. Smith brings Adam’s life jacket on every trip. (Check out Life Jacket-Adapted Inc. International at pfd-a.com.) • Ask if your hotel loans specialized beach-accessible wheelchairs with supersized wheels.

Traveling in a big city

Two years ago, Renná Bruce and Mike Paonne of Guelph, Ont., took a road trip to Montreal to celebrate their eldest son Steven’s birthday. “He’s a huge Montreal Canadiens fan,” says Bruce. To prepare her younger son, Matthew, then four, she showed him the hotel and city attractions online. “Since he loves to swim, the hotel was an easy sell,” she says. Like many kids with an autism spectrum disorder, Matthew can have a hard time with new situations. “Not preparing him can sometimes create a breakdown, tears or a tantrum,” says Bruce.

During the five-day trip, the advanced planning continued. Every night, Bruce and Paonne showed Matthew brochures and maps for the next day’s destinations. Even though some outings (such as the planetarium) didn’t thrill Matthew, he knew he’d score a swim and dessert at day’s end. “Rewards helped Matthew to stay focused and more accepting of the changes in routine. Throughout the day, he would check in with us to make sure we hadn’t forgotten the promise of a swim.” Since their hotel was central, they visited most sites by metro or on foot. “I did a lot of piggybacking,” says Paonne. “Next time we’d take more taxis!”

Helpful tips:

• Travel can be especially hard for kids with special needs since their routine is upset. Pack a portable entertainment kit with favourite books, small toys and snacks. Bruce also includes small objects (Lego pieces, tiny figurines ) that her son likes to hold. (Avoid small objects for younger kids who can choke.) For the car and hotel room, try a portable DVD player that can play their usual movies from home. • So that your child knows what to expect, make a book with symbols, and photos of the journey, hotel and city you’ll be visiting. Many kids are soothed by looking at this book. • For long road trips, some families swear by an iPad. Even kids with poor fine-motor skills and cognitive challenges can access programs and watch videos about their special interests. One friend’s child (with autism) especially likes watching YouTube videos of roller coaster rides. • Take your time. On the 6½-hour drive to Montreal, Bruce says they stopped three times so Matthew could have “body breaks” to move around outside the car. • When visiting crowded attractions, bring a portable refuge. At the Fishing Show in Toronto, Heather O’Brien of Guelph, Ont., made a “nest” of blankets and pillows in her son’s wagon. Her son Stuart (now 10) has been diagnosed with Tourette’s, ADHD, PDD-NOS, sensory processing disorder and anxiety disorder. When tired or overstimulated, he hopped into his wagon, burrowed under blankets and wore noise-cancelling earphones from his MP3 player. • Consider a super-accessible city like Washington, DC, if your child uses a wheelchair, says Harrison. Plus, most museums are free in Washington.

Going to a cottage

For the past seven summers, Pauline Busby and her sons, Colin, 14, and Aidan, 20, have rented the same cottage for one week. “I refer to it as a tent with walls,” she says. Since Aidan has cerebral palsy, autism and an intellectual disability, he needs constant supervision. “The cottage doesn’t have a lot of knickknacks. It has a comfy couch that can be wiped down and linoleum floors and a simple Formica table. It works well for us because we can relax and not worry about people’s stuff.” Other selling points? It’s all on one level and is a five-minute walk to the beach.

A single mom, Busby hires a support worker to join them. “We agree on a set amount of work hours and then we spell each other off,” she says. “It’s great to know there’s another pair of eyes, so that I can get a break too.”

In her “off time,” she reads, visits friends or takes Colin fishing, frog catching or go-cart racing. “I can’t imagine vacationing anywhere else right now,” she says. “Aidan talks about the cottage and looks forward to it.” His favourite summer ritual? “Going to the ice cream stand in town, sitting on a picnic bench and watching the sunset.” Perfect.

Helpful tips:

• Bring a large bin of toys, DVDs and books to occupy your child during meal prep or downtime. • Choose a cottage on (or near) a lake with a long, shallow water entry (not a dock over deep water). If your child tends to run away, look for a fenced yard. • Considering a support worker? Keep communication open so you’ll both have break times. “You have to have a good relationship with them and be comfortable living together for a week,” says Busby.

Summer resorts

Don’t want to bring a support worker but craving a little R & R? “Some resorts will do absolutely anything for you—especially family-run ones,” says Harrison. At Irwin Inn in Lakefield, Ont., Max participated in the kids’ program, with extra staff support. While Max enjoyed pony rides and fishing trips, Harrison walked in the woods, visited town and read on the dock. “They even had night events, such as a reptile show, so parents could have a relaxed dinner,” she says. “It was great to have time together and apart.”

Helpful tips:

• “When you reserve, tell them about your situation,” advises Harrison. Ask if they’ve had other children with special needs. Ask about facilities, staff support, programs and wheelchair-accessible cabins. • Ask about the noise levels in different kinds of accommodations. If your child is a light sleeper, or awake often at night, try a separate cabin where you can easily take your child outside, and not disturb the rest of your family. • If your child requires special foods, such as a puréed diet, ask to book accommodations with a kitchen. • Find out what attractions are nearby. When Talia was younger, we stayed at an Ontario resort near a town with a department store. One day, Jack drove Talia to the store so she could press buttons on the toys—her favourite soothing activity—while my elder daughter, Leah, and I enjoyed quiet time back at the room.

Thrilling theme parks

In early February, Jack, Talia and I enjoyed a four-day theme park extravaganza in Walt Disney World, Universal Studios and Sea World. All three Orlando parks get stellar marks for accommodating people with disabilities. At each, we visited guest services, explained Talia’s needs and got a pass enabling us to wait in shorter lines at rides. And because we visited during a slow week, the crowds were light.

At a musical street party at Disney’s Magic Kingdom, a beaming Talia danced with her favourite Disney characters. At Universal Studios, she conquered endless roller coasters with Jack. While they rode Revenge of the Mummy, I lounged on a nearby park bench in “New York”—complete with facades of Macy’s and the Guggenheim Museum. At Sea World, my eyes teared up as I watched Talia’s reaction to a stunning water show. She was all smiles as she followed the dancing dolphins, plunging bungee jumpers and rainbow parrots soaring through the sky.

Helpful tips:

• For any theme park, go at your own pace and choose times that are less crowded. • Bring family or friends. Deb Fletcher of Toronto has 12-year-old twin daughters, Emma and Quinn. Quinn uses a wheelchair and needs total care. On their theme park trip, Fletcher brought her nieces (13 and 15). While Emma rode thrill rides with her cousins, Fletcher took Quinn for ice cream. • To keep your child calm during ride lines, bring along a bag of her favourite distractions, including books, snacks and fidget toys. If your child is noise sensitive, bring along earplugs or earphones to block out the sounds of the park. • As you enter any theme park, ask for their accessibility guide. For each ride, it details accessibility, height restrictions and so on.

Getting started

Check out these resources for special needs travel: • Access-Able Travel Source • About Special Needs Parenting: Find several articles on cruises, hotels, theme parks • Autism on the Seas: Arranges group and individual cruise vacations for people who have autism spectrum disorders or other developmental disabilities. • Family Vacation critic: Has an online forum for parents of special needs kids.