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By: Gretchen Sparling
Photography: Courtesy of the Bono family
Date Posted: 7/6/2010
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The Art of Vacation
Susan Thomas of Grapevine envisioned her son Aidan’s love of all-things aviation taking flight during a mommy-son daytrip to an area airplane museum. But Aidan, 3, who was diagnosed with moderate autism, had a different plan in mind. Minutes after the pair entered the museum, Aidan announced he was ready to leave. “That way, Mommy,” he declared, pointing to the exit.
“I could see the anxiety coming across his face,” says Thomas, also mom to Sean, 6, who’s on the autism spectrum as well, and Aaron, 1. “It was one of those moments of parenting a special-needs child that I just had to say, ‘OK.’”
As the duo made their flight from the halls of airplane memorabilia, they passed the gift shop, where Thomas offered to buy her son an airplane to play with on the ride home. The curious boy then spent the next hour playing at the store’s train table. “He could have been continuing his meltdown. Instead, he was perfectly content,” shares Thomas.
Traveling with kids who have special needs might seem like an amusement ride in itself—with ups and downs, unexpected twists and turns, laughter and tears. But it’s these experiences that provide kids with timeless memories, exploration and joy, notes Thomas.
It’s All in the Details
If you’re reading this, chances are you already know that the first step in mapping out a trip anywhere, whether it’s a family vacation or just a trip to the grocery store, is to start with your child’s needs and interests. Zero in on a destination that will provide enough support to keep everyone in your family healthy and happy, advises mom of two Debbie Bono of Dallas. If your child is dependent on oxygen, rural camping might not be your family’s first choice—but that’s not to say you should view your child’s needs as a limiting factor.
Bono, whose youngest daughter Sadie, 16 months, has Pfeiffer Syndrome (a craniofacial disorder), says not everyone would think to go to the beach with a child who has a tracheostomy tube. “The thought of sand near the trach-tube is worrisome, but we wanted Sadie to experience everything our older daughter Molly [age 5] experienced as a 1-year-old,” she shares. “She wore a protective bib and filter over the trach and was perfectly fine—she had so much fun!”
Research and planning also make unlikely destinations like amusemen
t parks (and even a Disney cruise) accessible for Thomas’ two sons with autism. “It’s easy to automatically think that amusement parks like Disney World are off limits. But, if you prepare, it’s really the opposite,” she says. Disney’s resorts (both Disney World and Disney Land) go the extra mile in making each park accessible for children and adults with varying special needs (including wheelchair accessibility, sensory-themed maps, listening devices and much, much more). Texas also recently welcomed its very first amusement park (the first in the world), Morgan’s Wonderland in San Antonio, catering specifically to children with varying special needs and their families.
With some planning, assures Thomas, the world is at your family’s fingertips—no matter your child’s needs.
After homing in on a destination, it’s time to turn to the Internet … no, really. The ’Net is a goldmine for parenting support. “I don’t know how moms used to plan trips without the Internet,” says Tiffany Hartgraves of Fort Worth. Hartgraves, mom of two (Will, 9½, and Harrison, 4½, who has DiGeorge Syndrome, various learning challenges and mild Cerebral Palsy), says she scours the Web before deciding on lodging, activities and even restaurants for her family to visit.
In addition to researching area venues on the Web, Thomas suggests taking planning one step further and contacting (either via e-mail or by phone) support groups that focus on your child’s condition and are based in the destination you’re planning to visit. (For example, Thomas says if she were going to San Antonio, she would join the San Antonio Autism Yahoo group.) “The parents in these groups can tell you which restaurants are best for a family with a child on the spectrum [or with similar challenges],” she suggests. You might even ask other parents about the medical support available to children with a specific condition, such as, which hospital they would consider to be the best in case of emergencies. Adds Thomas, “It’s unlikely that they’d tell you anywhere they wouldn’t take their own child.”
Pack Your Bags ...
Once you have the framework of your trip planned, it’s time to start planning your family’s packing. Yes, more planning. “It all comes back to getting organized,” states Hartgraves.
Make a list of ever
ything your child might need during your trip, and, if possible, have a spouse or another caregiver review your list to make sure you haven’t left anything out. “You have to be prepared for anything,” says Hartgraves. Harrison, for example, is also a heart-repair child with a pacemaker and severe speech impairment, so the Hartgraves must travel with a pacemaker modem and an augmentative communication device (a mini computer). “This is important for the airlines to know when going through security. He [Harrison] can’t go through the magnetic machine, nor be scanned by the hand held,” she adds.
And the type of travel (whether by air, car, train or boat) will determine your space limitations for what you take with you.
So what if you find that you can’t pack up and take all your child’s necessities along for the ride? “See if your child’s medical supply company has national locations; if they do, they might just have a location that is in or near where you’re traveling. You might be able to make arrangements with them to have the bulkier items ready for you at your hotel or vacation home,” reveals Bono, whose daughter may have required oxygen in case of breathing emergencies.
And besides equipment, it’s likely your child must travel with a number of medications—liquids are not something you’re going to want to pack into luggage that’s checked with an airline. “When we’re flying, I’ve learned that the easiest way to make sure I can carry Harrison’s medications with me on the plane is if I pre-make all of the syringes beforehand. I label each one with a specific time and date to make sure we don’t miss one, and I always pack extras,” Hartgraves details.
Don’t forget other valuable carry-on items that might save your child from having a meltdown: Thomas has perfected packing each of her sons a “bag of tricks,” which includes a change of clothes, a favorite toy, a favorite snack, fidget items, noise-canceling headphones and a new toy that her sons can open during the flight or car ride. “Let your kids help pack this bag, if they’re able; this way, they start getting used to the idea of traveling and even get excited about it,” she adds.... and You’re Off!
No matter how well you’ve prepared, one thing’s certain: Expect the unexpected. After planning a weeklong getaway to Palm
Beach with her two daughters, Bono says she had carefully packed all of Sadie’s carry-on bags and made sure that she and husband Justin had plenty of activities to entertain the kids. “But, on the way home, it was Molly, our typical daughter, who ended up throwing up all over herself, me and the Transportation Security Administration officer—I sure wished I’d packed extras for us, too,” she says with a laugh.
And all the planning in the world can’t prepare you for unforeseen medical changes that could arise. After Sadie had to have emergency surgery (earlier this month), the family feared their upcoming summer trip to the beach would be canceled. “We spoke with our doctor and he said he’d write us a prescription for the vacation; it’s that important to simply live your life as ‘normal’ as possible,” Bono says.
Flexibility is especially key when traveling with children like Thomas’ sons, who struggle with new places and activities. To keep things adaptable, Thomas and her husband adopt a “go with the flow” attitude about the event or activity. “We understand that we may not get any further than the entryway of a museum due to some unforeseen fear or meltdown …. If necessary, we divide and conquer,” she says, describing how she and her husband sometimes split up (one parent staying with the child who wants to explore, the other with the child who might fear a certain activity). “We never push the kids to do something they might show distress over—this will only lead to more meltdowns and frustration for everyone.”
Despite the months of planning, the tireless preparation and endless packing, all three moms agree that the experiences are worth it. For the Thomases, travel leads to progress. “If you stick to it long enough, children will get used to seeing new things. The more you expose them [particularly kids with autism] to new interests and opportunities, the more they’ll grow,” she explains.
Near or far, any journey traveled together should be considered a success. “It’s important to get away, break your routine and be as typical as your family can be. … This is what life’s all about—spending time together as a family and watching your kids have fun,” shares Hartgraves. “It might not be a vacation for the parents, but you’re witnessing your kids making lifelong memories.”
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