#EQUIPMENT

Road Rules

Tips for planning a cross-country trip with a special needs child

Steve Carlin
Steve Carlin lives in North Carolina with his wife, Dawn, and two daughters, Eva and Zora. Zora was diagnosed with Dravet syndrome. Despite living with Dravet, she’s happy and according to Steve, has a “crazy sense of humor”—a trait Dawn says she gets from her Dad.

Three-and-a-half weeks. 2500 miles. A 30-foot stretch of living space. Two parents. Two daughters. Two dogs (both boxers, the older a self-taught therapy dog). And one goal: to get out of our comfort zone and make some memories. That’s the plan. That’s the dream. And this is how it came to pass.

As Dawn and I have become closer to and more involved in the Dravet community, we’ve noticed a common, if not disheartening, theme among parents like ourselves. There seems to be an overall reluctance to step outside of their family’s comfort zone. It’s completely understandable. The vulnerability you feel when your child is having a seizure only intensifies when you’re not in your own environment. The stares from strangers seem more judgmental. The local hospital staff, less familiar with your child’s condition. So, inevitably, for many special needs families, vacations are generally out of the question.

Before Zora’s seizures, we traveled quite a bit. And about a year into our Dravet journey, we realized that we really missed it. We missed the normalcy of being able to pile into the family minivan and hit the road. The feeling you get when you temporarily step into a fantasy world. We missed the break from reality. The escapism that, as special needs families, we could probably all use a little bit more of. Because—as hard as it is to admit—with Dravet or other forms of rare epilepsy, unpredictability is a reality. It’s one aspect of the disease from which you can never fully escape. But, for us, it made rediscovering travel even more necessary. We felt compelled to go on adventures with our children, to share every moment and make every memory… because, with or without Dravet, once a moment is gone, there’s no getting it back.

“We felt compelled to go on adventures with our children, to share every moment and make every memory…”

So we started slowly. An hour-and-a-half trip here and there. An annual lake-house rental in a secluded location unlikely to trigger behavioral problems—after all, you don’t need to stand in line to swim in a lake. We‘d select destinations within a 3-hour radius of our home. Would never venture further than an hour and a half from our local hospital. Every state has a lake. Rentals are fairly inexpensive. It was a good place to start. And so it’s become a yearly tradition.

But this year felt different. We felt more ready. When your kid turns 12, time starts to move very quickly. And with our older child, Eva, now 15, it began to feel like she was one step away from leaving the nest. So when the opportunity to take a family road trip presented itself, we thought: “let’s wing it.”

We set our sights on the Dravet Syndrome Foundation conference in Colorado. Instead of having me fly solo as originally planned, we decided to drive there as a family. We’d take the cross-country trip to end all cross-country trips. We’ll swing by the Grand Canyon (and hike the south rim, where the heat is a little less intense and the trails are a little more stroller-friendly). We’d visit our forefathers at Mount Rushmore, spend a night in the Badlands just to say we’d done it, and maybe even get in a little fly-fishing along the way.

“When your kid turns 12, time starts to move very quickly…So when
the opportunity to take a family road trip presented itself, we thought: “let’s wing it.”

Our friends, who have been close to Zora since she was born, caught wind of our plan and insisted we take their fully loaded RV. I’m talking king bed for Dawn and I, bunks for the kids, a television inside the RV and out. And, of course, all of the amenities that make the notion of taking a trip like this with Zora that much easier.

Because, even though we’re somewhat unique in our willingness to travel, we still have our reservations. And we weren’t always so adventurous. But we eventually came to realize that when you have a child with special needs, you’re vulnerable no matter where you are. So there’s really no point in sitting at home, waiting for the inevitable. For our family, Zora’s seizures are always going to be a guarantee, whether we’re hanging around our living room or hiking in Rocky Mountain National Park. What we’ve learned is not possible, however, is bottling time and saving it for later use. 

“When you have a child with special needs, you’re vulnerable no matter
where you are. So there’s really no point sitting at home.”

We recognize that, within the Dravet community, our family is somewhat of an outlier. In fact, we know of only one other set of Dravet parents willing to take their children on trips. And those parents began doing so, in part, because they saw us getting back out there and living to tell the tale. And in seeing us, they realized that maybe it was possible for them, too. So it is in that spirit of inspiration and encouragement that we offer the following advice to other special needs families entertaining thoughts of travel.

Let’s call them the Carlin Family Road Rules:
Don’t be afraid to step outside of your box When epilepsy takes control (because it will), try to shift your mindset and release yourself from fear. Dawn, for example, used to fear the judgmental stares from uncomfortable strangers who didn’t understand our situation. But once she decided to view these encounters as teachable moments—opportunities to show the world hey, this is what life looks like for some people, and it’s okay—she was able to let go of the fear and re-enter the outside world.
Don’t hesitate to ask for what you need Whether you’re booking a hotel room or waiting for a table at a roadside diner, you’ll be surprised by how accommodating most places can be. So go ahead and ask for that booth in the corner, that campsite close to the facilities. Ask to talk to the manager if you encounter resistance. Come upon a “no outside food or drinks” policy? Keep a doctor letter in your pocket explaining that your child is on a medically prescribed diet. We’ve found that most places are more than happy to oblige if we tell them exactly what we need and why.
Prepare for the worst by writing down what works best Make a list of every medication your child is taking or has taken in the past, noting which ones have worked and which ones absolutely have not. Even if you think you’ve committed this list to memory, write it down anyway. Because you never know how the stress of the moment—being in a new hospital, surrounded by new doctors— might affect you. And if the worst does happen, and you’re feeling pressured into a treatment protocol that you’re not comfortable with, don’t be afraid to put your foot down and say, “That doesn’t work for her. I do not consent.”
Avoid known triggers High-stimulation situations, lines, noise, and traffic are all triggers for Zora. Whether it’s taking the scenic route during rush hour or showing up 30 minutes before the park opens, figure out what works for your family and then make every effort to avoid the things that don’t.
Crowdsource Social media can actually be a great resource for families like ours. Passing through Missoula, Montana, and need a low-key, kid-friendly restaurant recommendation? Throw it out to the Facebook community—you’ll be surprised by what comes back.
And finally, be flexible Plan out the trip as much as possible, and then don’t be afraid to throw that plan out the window. If you have a set itinerary and you miss one stop, then you miss one stop. If you have to pull over to the side of the road to count pink and brown stones for an hour, then you pull up a stump and make yourself comfortable. When you think about it, it’s no different from how you’re already conducting your daily life. You might have a plan to go grocery shopping, but then your child has a seizure and, boom, your grocery trip is canceled. You’re already more flexible than you realize. Embrace it and let it empower you to get back out there.

Road rules: Tips for planning a cross-country trip with a special needs child

When you have a child with seizures, it’s important to give yourself and your family an occasional break from the norm. To step outside of your daily routine and experience something new, even if it’s just for a weekend. Heck, even if it’s just for a night. Life doesn’t have to be an endless cycle of stress and work. Life can be fun. Exciting, even—in a good way! There’s a whole world out there to explore. As long as you’re willing to get comfortable with the idea of stepping outside of your comfort zone.

 

 

In the coming weeks, my family and I will be traveling across the country, ultimately making our way to the DSF conference in Aurora, Colorado. We will be reporting back to TakeOnEpilepsy.com, accounting details from our trip and findings from the conference. Be sure to check back for an update on our adventure!

 

The views and opinions expressed in articles on this site are those of their respective authors and do not necessarily reflect the views of Greenwich Biosciences or any of its affiliates. The authors of these articles have experience in the topics they are writing about. Although the advice, tips, ideas, approaches, or resources mentioned in these articles worked for their respective authors, they may not be appropriate for you. Talk to your/your child’s doctor before making changes to any treatment plan.