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Written by guest blogger Bethany Hildebrandt
Travel is considered a luxury, an amazing getaway, submersion in a new environment filled with limitless possibilities. But for a family with a disabled individual, travel and life in general, is simply filled with limits.
As the parent of a 16-year-old daughter with cerebral palsy I know a thing or two about navigating disability life, wheelchair life and adapting travel so that we are safe always, but having fun! Here’s some overall tips of things you may not have considered when it comes to travel.
On the Way
Let’s talk about getting there. We’ve only ever driven to our vacation destinations. The truth is, we need so much equipment that getting on a plane seems overwhelming. So, if you’re currently thinking travel is out of the question for your family, let’s rethink what travel can look like for you! A memorable trip doesn’t need to be far away to be special. Especially for families like ours that have such rigorous schedules and are constantly traveling for appointments, a change of environment doesn’t have to be elaborate. Determine what length of time is reasonable to be in the car and set those parameters for a web search. Forget about limiting yourself to the tourist destinations and look at areas that may just have new scenery. We frequent Walt Disney World in Orlando, Florida simply because of their consistent accommodations for disabled individuals, but find what best suits your family’s needs.
The biggest tip with packing is evaluate what is necessary for worst case scenarios. Pack those items & let all traveling adults know where those items are located. Over plan for your needs. Much like when you’re traveling with an infant, you need all the things. Every sensory option, headphones, medication, extra diapers, plenty of tubing and feeding supplies, an extra G-tube— seriously, a buffet of all the medical supplies.
Before you want to stop right there in your travel plans because that seems too much, consider this an activity you do once. Create a travel medical kit and then you can actually keep it in your car even if you’re just going to doctor appointments and not a vacation. Once it’s established it’s easy to use and restock as needed. We make sure there’s a backpack on our daughter’s wheelchair at all times with medical supplies along with an additional medical supply bag that stays in the vehicle. Whether we’re in the hotel room, or on the go, or in the vehicle, we are always prepared.
I utilize ziplock bags and packing cubes a ton. Everything gets a specific place when you’re traveling with so many pieces. A bag inside a bag. You know what I’m talking about medical moms! Just try to recreate the setup and items available at home as best as you can.
If you’re traveling to a hot destination, be sure to bring cooling options like portable fans, neck fans, umbrella, hats, and cooling towels. Our family has discovered traveling with a power wheelchair is a must for primary mobility, but bringing an additional push chair is also a requirement. We use the extra chair for showering in a roll in shower and taking her anywhere that water is present like a swimming pool. This preserves the power chair and gives us options for seating especially if the powered chair needs to be charged— there’s the reminder to pack your battery charger for all your electrical equipment!
Assess what equipment you can take that doubles in use to consolidate too, like a bath chair that works at the beach for smaller children. We have taken a low to the ground beach chair for bathing and pool/beach use. As for all the other necessities, well that is packing just like the other travelers except maybe bring double the amount of clothing for…. Well, the unexpected accidents.
Some destinations are obviously more handicap accessible than others. Unfortunately many vacation destinations do not explain what level of accessibility is available online. I recommend calling and speaking with someone who is on site for your specific mobility questions. There’s usually more to the story than what a website offers and I feel you can get a better idea of what to expect when speaking with an actual person. Many hotels and resorts have options they can provide like a shower chair, bed rails, and on-site wheelchairs. Ask for the moon and maybe you’ll get it! Request ground floor or ensure there is an elevator.
AirBnBs may have exceptional accommodations because they’re so individualized. As you search for lodging, look outside the normal hotels, perhaps, to find the accessibility you need. Remember, ADA doesn’t mean fully accessible- it’s usually just a minimum requirement met. I also like to use YouTube, social media, and discussion forums to determine true reviews of a location. Other parents and caregivers are the ones who can give you the true inside scoop. If you want an even easier route, consider working with a travel agent who specializes in special needs.
Plan your days so they are paced with the stamina your child can withstand. Build in nap times and feeds. If your child has the most energy in the morning, plan to have your itinerary filled then. If feeds take a certain amount of time, plan for how that will look and if you can continue to be on the go or if you need to be stationary or in a home environment. We use more manual feeds/hydration while traveling, for example. We have the pump if it’s needed but we alter our normal routine when possible.
Swimming is always a big hit for summer vacations! Consider finding lodging with a zero entry pool for safe access and shallow water. Check for handicap entry seat into a pool for larger kiddos or adults. Bring or confirm availability of a floatation device (life jackets aren’t always best suited for people with disabilities so try out options before your trip to see what is safe and works well with your child’s physical abilities).
If certain environments or crowds are overstimulating, call a destination to see if or when a lighter attended time of day is to correlate. Plan to eat meals at off times (earlier or later than typical meal times) so the patron traffic is lower. Consider parking and transportation needed or available in the area. The Lyft app now has the the option to request a handicap accessible vehicle for ride share in some locations!
Ultimately, recreate as much of your home experience while on vacation. Go at your own pace. Set reasonable expectations and be open to adapting every step of the way. The truth is, if you are a special-needs parent you’ve already determined that this world was not created with our families in mind. Everything we do and everywhere we go we have to think several steps ahead. I wish it wasn’t the case and yet it’s a fundamental part of who we are now. That doesn’t have to restrict us from going. I want families to see that even if it’s not easy, it’s worth it.