When we decided to launch Villakey, a travel platform for families impacted by autism, I knew our families faced special travel challenges. But I never could have guessed the wide range of experiences faced by our families. And I am still learning, every day, every time I meet a new mom or dad who has a kid with autism. With one in 59 kids impacted, I meet these parents all the time. Sometimes, it’s planned and very frequently it’s by chance.
Over the past few months we have spoken to over 30 parents.
I am humbled by them: their tenacity, their selflessness, their sheer willingness to continue on, each day, even in the face of utter exhaustion. My father had Aspergers, so my experience with autism is from the perspective of a child. In a sense, learning from these parents has helped me come full circle. The stories reflect sacrifice but also a great deal of joy.
First, the tough part. Parents face so many challenges, and the idea of travel can be daunting.
- Sleep issues. One father shared with me that his son cannot sleep alone on vacation. Any place they stay MUST have several beds in the child’s bedroom, so his entire family can sleep in the same room. A mom I spoke to — who has two kids on the spectrum — told me she is most comfortable at night if she is can keep an eye on her kids’ bedroom door at all times. Sometimes, she and her husband are desperate for privacy. Once, while on vacation she and her husband squeezed into a narrow space outside the hotel room window — not really a balcony — so they could both have a glass of wine and an adult moment together.
- Dietary issues. So many kids do best when they stick to special diets, or they simply refuse to eat certain foods. It’s a blessing to have the privacy of a kitchen to cook special meals, even if it’s just breakfast.
- Safety issues. Once, when my son was two, he wandered outside the house when my back was turned, and amused himself playing by the street (gravel was HIS thing) with cars whizzing by on the right next to him. Thankfully, a neighbor rang the doorbell and brought him back to me, making sure I knew what a negligent parent I was. Another time, he decided to escape out the window, which was cracked open on a summer day to explore the second-floor rooftop. With my heart in my throat, I coaxed him back inside. Thankfully, he eventually outgrew his wanderlust. But for some kids with autism, the wandering never ends. Parents must be vigilant and watch over them, always. It’s critical to have alarms on the doors to alert them when the kids try to wander outside.
- Privacy issues. When a kid with autism has a meltdown in public, it is exhausting. It’s not always feasible for parents to explain the situation. One dad I spoke to took his son on a cruise, and the wait staff was willing to accommodate them by seating the family in a special area of the dining room. Nonetheless, other diners would stare and make the family feel uncomfortable when their son was acting out.
- Sensory issues. I heard from parents about scratchy sheets. Weird smelling cleaning products. Lights that are too bright. Loud noises. Crowded places. All the things we take in to account as we curate our homes on Villakey. We are still learning and fine-tuning every time we speak to a new guest.
So why travel?
Vacations can be a time for kids with autism to explore THEIR special passion.
Since many autistic children have intense and highly-focused interests, vacations are the perfect opportunity to explore them. One father introduced me to his son David, who is completely fascinated by tunnels. His burning desire is to see tunnels in person, be in them, and drive through them. David’s great dream was to visit London, so he could see the Underground. Another parent saved many months to travel to Tokyo — her son was obsessed with Japanese anime.
For families who also have typical children, we know about how important it is to provide a sense of normalcy.
Vacations are a chance for families impacted by autism to experience this. If the autistic child is able and willing to stay with a sitter, Care.com and other platforms provide sitters who have experience with autism, so parents and siblings can venture out on their own.
Everyone deserves a break. Everyone needs a vacation. We want to do our best to help make this possible for families impacted by autism.