3 Must-haves When Traveling With My Angel
Special-needs travel with children requires planning, flexibility, and preparation
Traveling with my 12-year-old Angel, Juliana, can be challenging, but it’s not a task that I shy away from. The holidays will be here before we know it, and that means time with family and friends away from home.
When traveling, our normal staycation routines still help things go smoothly. With this in mind, there are three travel essentials I won’t leave home without: Juliana’s safety bed, the right supplies, and an attitude for adventure.
Essential No. 1: Juliana’s safety bed
Most of our family’s vacation time is spent having staycations. However, out-of-state trips have included a visit to the Angelman syndrome clinic and participation in a sleep study clinical trial. Both events led us to North Carolina.
Traveling with Juliana is hard work. And there’s always the unexpected. So I plan as much as possible to make the trip comfortable and safe. A part of that is ensuring that we have Juliana’s travel bed. Juliana’s safety bed is a zippered enclosure that puffs up into a twin-sized triangle tent. I don’t know what we would do without it.
Juliana relaxes on her travel safety bed, which starts out as a pink blob with netting. (Photo by Sabrina L. Johnson)
Before we got the travel bed, we used a tent with an air mattress. It was a nightmare to lug around and assemble. While some Angels sleep OK in a regular bed, that’s not the case for Juliana. She sleeps well, but she’s active before she nods off.
Once on a trip, we spent half the night trying to keep her in bed. The other half was spent keeping her hands out of my face and hair. Juliana sleeps best alone, and we can easily manage that with her travel safety bed.
Essential No. 2: The right supplies
When Juliana was younger, her gastrointestinal issues and reflux were still fairly complicated. One night while driving to Florida, our car was suddenly filled with a strong and familiar odor. Juliana had what I call a “blowout.” Ever since she was a baby, we’ve dealt with countless scenarios of constipation or the opposite, when the stools are too loose.
On this night, we had the latter. In the dark, I scrambled for supplies to get things cleaned. It wasn’t funny then, but today, we laugh about the soiled clothes I had to roll up in gas station paper towels and leave in a Florida dumpster.
Now, I have a better handle on things when we hit the road. A backup supply bag stays in my car. In addition, I bring extra clothes and incontinence supplies to handle a messy cleanup.
Essential No. 3: A spirit of adventure
Although I’m a planner by nature, some things are impossible to plan. Life with an Angel is unpredictable. When I learned to accept this, my outlook changed for the better. So when we leave home, I know there will be a hiccup or two during our trip.
Sudden changes in an Angel’s environment can also trigger anxiety. To combat it, I make sure to have most of Juliana’s favorite items with us, which helps a lot. But the best effort comes from chalking up any mishaps as an adventure. Plans often go wrong. And when they do, I work hard to make the best of the experience.
For example, last week when we were out of town, Juliana did well during a visit to the zoo. But toward the end of our outing, my husband and I had to do our divide-and-conquer routine. When Juliana got too fussy, he took her inside for a cool drink and rest. While Juliana recovered, my daughter Jessa and I explored the final areas of the zoo.
Juliana, right, and her sister, Jessa, take a break at the zoo before Juliana runs out of patience. (Photo by Sabrina L. Johnson)
Traveling with my Angel takes a good bit of work and a whole lot of patience. Our adventures are not always ideal. But with the right essentials, we make it work.
Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.
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