Article
5 steps to navigate vacations for kids with CVI
People with CVI and parents of CVIers weighed in with their best tips for navigating travel and enjoying vacation.
With summer break coming in hot, I know I’m not the only CVI parent making lists, sketching out calendars, and hoping for the best. The next few months will be wild — between camps, conferences and, most exciting of all, vacation. Buckle up!
It’s easy to get overwhelmed by the planning phase and never follow through with some much-needed R&R. I know we’ve become creatures of habit out of necessity. To protect my daughter’s energy – and, if I’m being honest, ours too – my husband and I tend to plan most of our trips around visits to grandparents. Their home is a known environment, we focus on loving quality time and it doesn’t hurt that they live in a beautiful location with a pool. It’s ideal for us and we have it mastered.
But there are other adventures waiting for us. After a few positive experiences in urban areas like NYC and Boston, I can suddenly envision our family branching out. It helps to set a reasonable pace, build in breaks and allow our kids to pick activities that suit their interests. For example, Grace, my daughter with CVI, chose to take the family to a board game café – a quiet location with familiar entertainment tucked away in Greenwich Village. My younger daughter, Liz, wanted to shop. We didn’t subject Grace to this, as she would say, “torture.” She stayed back to rest with a good audiobook.
No matter where you’re going or for how long, vacation planning and execution take forethought and honesty about what your child with CVI can truly enjoy. This guide is full of tips from fellow CVI parents who have embraced travel and lived to tell about it.
1. Outline your trip requirements
Before booking a trip, dream a little. What are all your needs and wants for the holiday?
“My dream itinerary would be someplace within two hours of driving or being able to get a flight at a really quiet time at the airport. The hotel has a suite with a kitchen, blackout shades, an allergy-friendly restaurant, an accessible indoor pool with a water slide, easy access to riding trains, quiet places to eat and get a snack, indoor play, a sensory gym that is not loud or crowded, respite care so mom and dad can enjoy a few hours to themselves, weather is 70 degrees… Not sure if this place exists. 😉” – Rachel Bennett
“A dream vacation for me would be somewhere we could drive to pack all necessities, including a bath chair, wheelchair, and all other needed medical equipment. Once we arrive at the oceanfront hotel, we need full accessibility. The hotel would have more than a mini-fridge to store packed snacks. I would also love the option of an indoor pool with a transfer chair to the pool, and accessible walking paths in nature.” – Lacey Smith
A few considerations when planning a trip:
Location
Will you drive or fly? How long can your child manage to sit still? Do you think an urban or remote place would work for you? Where would you seek medical care in an emergency?
“My child hates the noise in an airplane and also hates headphones,” Jessie Zheng explains. “He tolerates the noise on the highway a little better. So an ideal itinerary for us will be a coastline road trip with lots of stops with scenic views. But it also has to be on warm (not hot), cloudy days; he doesn’t handle sunny days well, even with sunglasses.”
Length of stay
What are your lower and upper time limits on a vacation? Don’t short-change yourself. You’re investing considerable energy and money to travel, so once you arrive, how much time away do you need for it to feel like a true vacation? How much time does your child need to become accustomed to a new setting? On the flip side, how long can you be away from appointments, therapy, school, and work?
“Our son dreams of things like swimming with whale sharks and going on an African safari, which maybe one day that might be possible – though with inflation at this rate,” Colleen Nguyen laughs. “It’’ll take a lot of practice before we ramp up to that. We have done a ton of road trips, which he seems to like and have even driven across the country and back. We hit up the national parks, like Arches, Canyonlands, Yellowstone, and Grand Tetons. We were able to go at our own pace, have our own space, but obviously it all comes at a cost – not just financially speaking, but time.”
Environmental factors
Is your child sensitive to lighting, noise, or temperature? Does the hotel or rental have the accessibility features you require?
Rachel Bennett recommends finding a home away from home. “We invest in a nice AirBnB, so we can have all the essentials and comforts: full kitchen to cook allergy-friendly foods, space to relax and play, recharge time… making it as close to his routine at home is incredibly helpful.”
CVIer Tina Zhu Xi Caruso reminds us to, “Check the weather. Weather can affect CVI; too much heat can equal no vision.”
Activities and relaxation
Is your child (and family) into chilling or seeking activity? What supports does your child need to enjoy the time away?
As far as activities are concerned, Stacey Matthias says her family enjoys “sensory sites and experiences – waterfalls, take a rickshaw or boat instead of a taxi or bus,” going on a “language safari, counting the number of different languages heard in a day in touristy places,” and, of course, finding tasty ice cream.
“If you are visiting a site that offers audio description devices, definitely use them!” says Christi Boomer. “As a parent, I thought my son was too young and waited to try it out at Disney until he was eight years old. Despite having been on rides multiple times, knowing the plot from movies, seeing ride previews, and my describing things to him, he was mesmerized on the rides that had descriptors. It opened up a whole new world and gave him another bit of independence.”
Colleen says that their family focuses on getting her son outdoors as much as possible because it is “very regulating for him.” Dana Moss Mashburn likes a calm itinerary. “My son is entering the 7th grade and I am thinking about a trip to Williamsburg. I feel like we can go at our own pace and keep it low-key.”
2. Plan your itinerary
The parents surveyed for this guide agree that your plans are probably going to be driven largely by energy conservation and accessibility. They recommend the following:
Set realistic expectations about how much and what you can do.
Plan frequent breaks and ample rest. When the brain is working overtime to take in the sensory inputs, fatigue is a real concern.
“Allow time in your schedule for slow and quiet days to recharge,” suggests Renee Cook-Rabideau. One adult with CVI agrees, “For example, if I’m going to a city centre, the next day I only plan something light, usually in the afternoon. Allow flexibility for plans to change as CVI is variable, no matter how well you manage it.”
“It’s a huge mindset shift,” Rachel explains. “We can’t overbook the day, let him get too hungry or overheated. He loves riding the trains, so we have to choose a place where a daily activity is riding public transportation. And also just be ready for the unexpected, for the meltdowns, for the migraine episodes, etc.”
Get away from the crowd.
You may travel at off-peak times or go off the beaten path. If you’re traveling with a large group, set expectations about how much you’ll be able to participate in the plans and, if possible, give input on the agenda. And know what you’ll do if there is a CVI meltdown.
Renee says, “Find parks and gardens away from the crowds to explore. Being in nature always relaxes my daughter.”
“We try to have an escape plan for times of meltdowns or just being overwhelmed!” Ruth Craig emphasizes. “We try to talk ourselves through the bad days, understanding what he will actually enjoy. Be realistic with your plans, taking everything into account.”
Make medical and emergency plans.
Murphy’s law is a bummer. I can’t tell you how many times we’ve arrived to our destination with a suddenly sick kid in tow. Think through the following…
- If your child takes prescription medication, call your insurance provider to request a vacation override to ensure you have plenty of stock.
- Know where the closest acceptable hospital will be when you arrive and get details about your insurance policy’s rules around out-of-network care and emergencies.
- Ask the insurance company to add the dates you’ll be traveling to your file, in case something happens.
- If your insurance provider requires referrals to a doctor while you’re away, inform your child’s physicians and ask about the best way to quickly get one.
- Buy travel insurance in case you have to cancel due to a medical emergency before you leave.
Marisa Lynn Smith reminisces about a medical emergency on the road and how her family adapted.
“My boys came down with high fevers while we were on a 14+ hour drive. They spiked around hour nine, so forward was better than turning around to go home. We had planned to stay at a dear family friend’s house while she was on a trip. See, when we travel with my delicate boy (the little one) we plan to always stay in places where we have a safety net. He has a host of medical conditions, including seizures.
“He ended up having a rough time and we had to go to the ED and then stay in the PICU and EMU for five days total. My friends took my older son with them to their church family camp. My little one ended up needing to explore and learn where things were at a hospital 900 miles away from home. We had to try new formula because I had left most of his regular stuff at our friends’ house. He needed to learn the new sounds and scents too.
“Eventually he was comfortable and was able to use his vision to look beyond the length of his own arms. He found some buttons that he shouldn’t push. Example? The hospitals should really not put a glowing Code Blue button right by the head of the crib. The nurse and I moved the crib so he couldn’t reach,” she laughs.
3. Packing up and preparing for launch
To me, the ramp up to departure is the hardest part of vacation. By the time I’ve finished checking my lists twice and packing (way too far in advance), I’m wound tight. We all know the feeling! Here’s a list to help you get started, courtesy of CVI parents.
What to pack (or ship)
- Snacks, dietary-friendly food and feeding tube supplies
- Toileting needs
- Special bedding for safety
- Comfort items and entertainment
- Sensory kit
- Extra clothing to layer or change if there’s an accident; a hat and sunglasses
- For children learning to be more independent, use packing pods and mark belongings with bright colors and/or accessible labels so they are easy to find.
- Comfy noise-cancelling headphones
- Did anyone say iPad?
- Mobility aids (e.g., white cane, stroller, wheelchair). You may also consider renting equipment when you arrive, for example, a wheelchair with jumbo tires for the beach.
“We take an adaptive jogging stroller with us whenever we venture out (sometimes on typical errands),” Daisha Beck Archer shares. “It allows her to take a break from navigating and we can be in the community for longer periods of time. Life changing. (She is 11 years old and about 5 feet tall).”
Amanda Koegler says her son benefits from traveling with his white cane. It’s “mostly a signal for everyone else to get out of his way. This is a ‘hack’ we use in most crowded situations.”
Preview, preview, preview.
Start talking about the trip, the activities you’ll experience and the people you’ll see. Discuss what you’d do in case of an emergency, if appropriate for your child.
“Point out important things,” Gayla L. Boomer says. “What to do if you get separated, who to ask for help, put your phone number inside their forearm in case of emergency. For example, what should they do if they get out of an elevator and you don’t? Tell them to stay put and you’ll find them.” Her family had a stressful experience where “Mom was searching and Gramma was heading toward the airport police” because their CVI kiddo went looking for them.
4. Bon voyage
A strong theme emerged when it comes to travel days: Take any help you can get! In a recent interview with CVI parent and advocate Stephanie Kung, she describes an 800-mile road trip that she and her daughter took to a therapy intensive.
She shared that she “relied on the kindness of strangers at different points.” At hotel check in, Stephanie brought Rosalie in with her and started to scheme about how she was going to manage the luggage and parking too. “I had been thinking I’m just going to go to the room. I’m going to set up her sleep safe bed, so she has a safe space. I’ll get her safe, and then I can run out to the car and bring things in.”
The receptionist had a different idea. She offered to watch Rosalie while Stephanie unpacked the car. When Stephanie came through the front doors with her cart, the receptionist saw the load of food, medical supplies, stroller and luggage. She offered to wheel the cart up to their room. “I don’t know how I would have done that part without her, to be honest. Sometimes people will see that you really do have your hands full,” and you have to be “willing to accept help at different points.”
Much of the advice from CVI parents centered on air travel, which can be complicated, to say the least. Here are a few ways you can plan for the assistance when you fly.
Pack strategically.
Every child is different and you know what your child needs to be most comfortable on a flight. A few ideas to get your list in order:
“We still need to travel with a car seat so that my daughter has a safe place to sit on the airplane and once we reach our destination,” says Lacey. “For her car seat, I have found the traveling toddler strap to be a lifesaver, allowing me to attach her car seat to my carry-on so that I have the ability to pull our luggage and push her stroller. I also always wear a backpack. Meds stay in the backpack at all times, including emergency meds and liquid thickeners, extra wipes/diapers, and a change of clothes (or two). I attach a lunchbox with safe drinks and snacks to the outside of the backpack. We always pack familiar items from our routines – cups, utensils, stuffed animal, brush, toothbrush, and our storybook Bible.”
Arrive early.
Reduce stress levels by allowing for plenty of time, double-checking arrangements and printing tickets before you leave for the airport, if that’s easier for you. Aside from foot traffic and security delays, any number of incidents may slow you down. My daughter benefits from a more leisurely pace. And the last time we flew, she had a seizure as we walked through the automatic doors to the concourse. This made her tired and disoriented, so we were glad to have the extra time.
TSA Cares and assistance programs
The Transportation Security Administration offers assistance to air travelers with disabilities and medical conditions through TSA Cares. You can apply for TSA PreCheck® for expedited, assisted screening. One adult with CVI also recommends assistance schemes like the sunflower lanyard, which allows people to identify as someone with a hidden disability who may need help, extra time and patience.
Use mobility aids.
Strollers, wheelchairs, and white canes are essential for navigating the airport safely and efficiently. Expect these items to undergo screening. My daughter folds up her cane and slides it down the conveyor belt, then walks through the X-ray, guided by our verbal cues.
“We travel with a more compact stroller (Convaid Cruiser) for portability versus my daughter’s wheelchair,” Lacey says. Rachel also uses the Convaid because her 11-year-old “gets fatigued after walking for 10-15 minutes. We are finally able to travel without it totally breaking us.”
Jordan Peters and her child have “been flying for medical studies since she was born, so airports seem to be ok for her.” She brings “a sling to carry her if she gets tired or overwhelmed.”
Wheelchairs are expensive and difficult to replace. In response to frequent wheelchair damage by airline bag handlers, the Department of Transportation abides by new regulations and fines for incidents. You can learn more about the Air Carrier Access Act and follow the DOT’s public awareness campaign on the rights of travelers with disabilities.
Pre-board flights.
Most airlines will allow you to identify your child’s need for pre-boarding, either at the time of purchase or airport check-in.
Michelle Hughes and her son travel regularly. “At check-in to flights, request to have priority boarding. Getting on first without dodging everyone has been fantastic. We are able to settle in and be seated before the high visual stimulation occurs.”
“Honestly, flying with Southwest has been amazing even though they don’t have assigned seats,” says Jordan. “As long as you tell them your child has a disability, they work with you and make sure you are taken care of.”
When you board early, you have more time to get settled and comfortable. Rachel downloads her son’s favorite videos on the iPad and brings as many snacks as possible. She “narrates everything that is happening when aboard the plane so he can orient to what is happening, like whether the plane is up in the air yet.” She says, “He still has a hard time during landing.”
5. Deep breaths, enjoy!
You’ve made it through the planning, packing, and traveling to arrive at your destination. If you’re like me, it takes a day or two to get into a restful mode. Here are a few ways to make the trip enjoyable from beginning to end.
Use routine as a guardrail.
Routines are predictable and comforting. Many of you reported that you stick to them as closely as possible – even on vacation. Parents also wear a consistent, bright color so that their child can more easily spot them in new places.
Provide an orientation
Give your child a tour of your new space to help them orient and settle. Some of this orientation can happen before you ever leave home.
“If visiting a new place, such as a museum or amusement park, watch YouTube ride experience videos,” Christi recommends. “It gives a preview of what they will see so they can orient during the actual experience. While we think it may ruin the surprise, it actually gives them the ability to enjoy the experience.” Tonny de Vries explains that her “daughter also likes to look at pictures of where she is going.”
Upon arrival, Candy Kessel Moran tries to do some O&M “when not so busy and reorient as needed. Sometimes it can help with anxiety and fear so we all have a better time.” Stacey says one of the first things they do is “walk through how to go from bed to bathroom and how to use the shower. They are always different and confusing.”
Watch YouTube ride experience videos… so they can orient during the actual experience. While we think it may ruin the surprise, it actually gives them the ability to enjoy the experience.
– Christi Boomer
Reframe your expectations and focus on the experience.
Things will go wrong, you will pivot and you can still have a great time. Know that the travel now can set your child up for future independence in ways you never dreamed possible.
Lacey knows you’ve got this. “Don’t forget your cape because you definitely feel like a supermom after a day of travel. It takes a lot to travel with a medically complex child. And don’t forget that the travel may be hard, but the destination is always rewarding, especially when you have the opportunity to spend time with the ones you love.”
Lauren reminds us to practice self-compassion. “Be patient with yourself. Traveling can be hard.
You’re allowed to be upset and overwhelmed. Don’t be ashamed to cry if everything is too much.”
“My son went to LA with his university and sighted guide without me!” Rebecca Hallows marvels. “Never thought he’d manage it, but they do.”
Learn more about traveling with your medically complex child from our collaborators at DEE-P Connections.
