In the past few years, my family of five has traveled thousands of miles with my son who has multiple disabilities including cerebral palsy, epilepsy, and Crohn’s Disease. Since my children are often all going in different directions based on their needs, especially with my son’s extensive physical therapy and doctor appointments, traveling is a chance to bring our family together in a shared experience. We’ve found that driving — from New Jersey to Florida to Maine to Michigan — is easiest for us, especially since we have a wheelchair accessible van. We can pack everything we need (and more), and it means we’re always traveling with our own setup. After numerous miles on the road, I’ve learned a lot. Here are the things I always do now, to make traveling with my family easier.
Start small and/or go someplace familiar
Traveling to a new place can feel daunting, especially as a parent of a child with disabilities. What if we have a medical emergency? Or forget some of his hard-to-come-by medical supplies? What if a place isn’t accessible? Or we can’t find a large enough restroom? Don’t jump straight into the deep end. Starting off with short trips and familiar places helped ease us into longer getaways. Our family traveled to the same townhouse in Vermont for years and years. After each trip, we felt more confident and ventured further out. Last year, we drove from New Jersey to Key West – a trip of 1200 miles, 22 driving hours and 2 stops each way! – and knew how to manage because of our prior experience.
Set items aside in advance
Planning ahead seems obvious, but it’s easier said than done. Here’s my trick: for the few weeks before our trip, as I go through the motions of caring for my son, I make a list of the supplies I need each day (as well as items needed for emergencies) and set them aside as they come to mind. The less I have to pack right before the trip, the better — and the less likelihood I’ll forget in that last-minute crunch.
Streamline your needs as much as possible
In a perfect world, I would have access to my son’s wheelchair, walker, stander, and bath chair on every trip. But a vacation isn’t fun when we drag along too much. When we first started traveling, I brought as much as possible. But slowly, based on trial and error, I began leaving items behind. For example, we can make do without the bath seat. The wheelchair is a necessity, but we now have a new medical stroller and I’m considering leaving the wheelchair behind on the next trip. So — back to my first tip! — I’ll use a few short excursions to test it out, and that’ll help me decide.
Bring extra of everything
Yes, this may seem like I’m contradicting myself, but while streamlining is important, so is making sure you have the absolute essentials. One of my biggest fears is that I’ll be far from home without my son’s feeding tube syringes or seizure medication. And aside from packing extra medical supplies, one major advantage to taking a road trip is the additional space. There are so many small spots where we can squirrel away an extra duffle bag or two. We also put a roof rack on top of the van (don’t forget to pack a step ladder so you can access the rack at your destination). I always stash a spare feeding tube, formula pouch, and change of clothes in my son’s “go” bag. I do my best to stay organized and try to strategically remember where I put each item, so I don’t add to the stress of our trip as I search for that much-needed extra shirt. I recently started labeling bags so I remember where I stuck everything.
Protect your routines
A time change, or just a change of scenery, can make it easy to fall out of routine. And routine is important. As hard as it may be to watch the clock when you’re navigating a new space, it can pay off in the end. Medication routines, or routines that keep your child safe and happy, are worth the extra diligence…. a lesson I learned the hard way.
Stop as often as you need
Long car rides are hard on everyone’s body. Find places to stop along the way. We look for places as we go but like to stick to welcome centers or chains that are already familiar. Spend time exercising or stretching your child when they are out of their wheelchair, so they burn off energy and are loose and limber for the long drive. I would rather arrive a little later feeling good than stressed and early.
Find out what the hotel can provide
I do my best to call any and all facilities we plan to visit ahead of time to find out what supports they offer for people with disabilities. Is the hotel room wheelchair accessible? Do they have a sensory room or quiet room? Are there staff on hand who know how to support someone with a disability? Researching online is good, but calling ahead and speaking to an employee is even better. That way, they know you’re coming and, hopefully, will look out for you. Even if they don’t, you have a name and contact you can call once you arrive.
Screen time is your friend
We all want to limit our kids’ screen time, but when I travel on long road trips, I download as many movies as possible. For our family, it’s not worth arriving at our destination stressed and exhausted. A little extra screentime in the car might make the experience better for everyone.
Be flexible
Of course, the biggest takeaway for any trip is to roll with the changes. There are so many aspects of travel you can’t predict. The most important thing is that you all arrive back home healthy and safe. So don’t stress the detour if something goes off plan. As long as you’re getting time out of your house, and with your family, you’ll be making memories.
Jaclyn Greenberg is a former tax accountant who became a freelance writer when her son was born with multiple disabilities. Jaclyn now writes about parenting, accessibility and inclusion and has written for The New York Times, CNN, Wired, Huffpost, Parents, Good Housekeeping, Fodor’s and other places. She’s working on a memoir about sticking together as a family of five. LinkedIn, Instagram, X, Website.
