From the beginning of our relationship, my husband and I bonded on our love of exploring and traveling to new places. Whether it was an hour-long road trip or a plane ride to a new part of the country, we knew that once we started a family it was important to both of us to share our love of traveling with our kids. Our firstborn son came into this world with difficulty. A 14-day stay in the NICU would uncover our son's brain bleed, and we were told that he would likely have a challenging life.
Despite our son's rocky first years, we were able to expand our family with three more children. As a family of six, with one child who uses a wheelchair, experiences daily seizures, and is unable to walk, talk, or see very well, we found it even more important to get out on the road and explore our country. It's important to us to be together and make as many family memories as we can. I hope to share a few tips on what we've found useful while traveling and making memories with a medically fragile child and his three energetic siblings.
Planning
First, prepare for your trip. Plan out the mode of travel and itinerary that works best for your family. It became clear to us pretty early on that plane travel was not the best for our son who uses a wheelchair and cannot transfer in and out of it on his own. We purchased a wheelchair-accessible van that was larger that could accommodate the wheelchair, our son's extra equipment, our luggage, and all six of us. We have been fortunate that our son travels well. We have crisscrossed the United States seven times, in addition to shorter, more local trips. Before leaving for our trips, we plan figure out how many miles/hours our family can manage cooped up in our van. We research the route, looking for fun places to stop and break up the trip. We plan our itinerary very carefully.
Packing
When packing for our trip, we make sure to pack every piece of equipment, extra medicine, and other supports our son may or may not need. We pack enough medicine for our travel plans, plus more. We pack medicine for "just in cases" - colds, injuries, breathing issues, emergency seizure medications, etc. We pack extra diapers/wipers/pads. We pack extra changes of clothes that are easy to grab for the bathroom or other accidents while en route. We pack tons of disposable grocery bags for wet clothes & shoes and trash. We make sure to pack any kind of distractions for the kids: their chosen favorite toys, music, books, and video games. The kids pack their coziest blankets and pillows, too. There's a lot of down time while traveling. We pack snacks, drinks, lunches, and even more snacks! Also any type of special foods our son may need. We tend to pack as if our destination doesn't have any stores. This may be over the top, but we've found in some of the locations we've traveled there isn't a store nearby, and if there is, it may be super expensive. We travel as our own self-sufficient unit!
Hotels
When making hotel reservations, make sure you inquire about the floor space of your hotel room and the ability for a wheelchair to actually get to that room. Hotel chains focus on the in-room bathroom accessibility for a wheelchair user, which is wonderful. But we've found that with a family of six - one in a wheelchair - it's very difficult to find a spacious room with lots of floor space and beds. I can't tell you how many times we have requested an accessible room only to not get one, or a room that doesn't have enough space to even allow a wheelchair to enter the room! We definitely have to be flexible while traveling. Air mattresses and those extra blankets and pillows come in handy.
Accessible Restrooms
A huge issue for families like ours while out in the community is a lack of accessible bathrooms. They're few and far between, but thankfully as awareness has increased, there are more available at rest stops and there are even websites to help find these accessible restrooms while traveling. For us though, we travel with a portable, foldable cot. It's only slightly bigger than a foldable camping chair. After years of changing out son on a mat on the dirty, sometimes wet and bug-infested ground, it finally occurred to us to purchase a foldable cot. This has been life-changing for us as caregivers, and also for our son and his dignity. While road tripping, we find it best to stop for bathroom/rest/stretch breaks at a local park or playground if it's an option. This way, everyone can stretch and get some fresh air and fun! Our family has enjoyed some amazing playgrounds across this country!
The Destination
Lastly, a few tips on the most important part: the destination! As a family, we have enjoyed visiting a ton of National Parks. Always check out the visitor center. There is usually an accessible brochure to show you where a wheelchair can be accessed. You might be surprised to learn how many accommodations the parks make to families like ours. These accommodations can allow us to travel on roads that are often closed to the public, or to use specialized wheelchairs or elevators. Popular amusement parks have all sorts of systems in place to accommodate families like ours, from special passes to special calming rooms. It's the same for local parks and beaches. You just need to ask! There is almost always an accessible beach entrance and an option to rent or borrow beach wheelchairs. We've found some beaches easier to navigate than others (how compacted the sand is, or distance to the water). Through or son and his preferences, we've discovered locations with hot springs. Our son does his best in warm water. We have all enjoyed traveling through some breathtakingly beautiful locations out west to find the latest hot spring pool location! Find what motivates your family and incorporate those motivations into your trips.
My biggest tip is to be flexible! As a parent to a child living with disabilities, being flexible is already your jam! I find that if I can, it's great to be out on the road exploring new places with my family. Yes, it's definitely work, but at least I'm out with my family together, making memories in some amazingly beautiful locations. I find the chance to get away and change the scenery helps me return to my everyday, sometimes challenging life.
Our family has made some great memories while traveling. I know we are lucky. I hope these tips help you to plan for your family to get out there and explore.
About the Author
Rachel A. is mom to four children. Her first son was born full term, but with difficulty leading to a life that wasn't what she had prepared for. Rachel has found strength and support from other caregivers of children living with special needs. She hopes to share a little of what she's learned over these 25 years with other families. Rachel lives in Maryland with her husband and four children, dog, cat, and various foster kittens. She loves traveling, especially out west and to Sanibel Island, FL. She also enjoys spending time with her husband and kids, cooking, thrifting, listening to music, and spending time outdoors.
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