Beyond Accessible Travel
Wonders Within Reach focuses on accessible travel for wheelchair users. I’m sure this is the case with many disabilities, but accessibility needs are only the tip of the iceberg for someone traveling with Spina bifida. Unfortunately, I can’t address the range of needs across disabilities. I do, however, know a little something about the specifics of travel with Spina bifida.
Catheters on the Go
Let’s be real – bathroom needs are probably the biggest obstacle to getting out. Accessible restrooms aren’t found in the center of the Amazon, and adult changing tables are practically non-existent in even the most modern cities.
If Accessible restrooms are what you need, you’re in luck. Apps like accessaloo focus solely on locating accessible restrooms. General bathroom finder apps also have the ability to filter by disabled access.
Somehow, we often find ourselves in areas that haven’t been covered by an app, yet. In situations like these, the most helpful thing I’ve found is to google “accessible _______ (destination name)” and see if it’s already been covered by a disability travel blogger. While I may be one of the few bloggers focusing on disability travel with kids, there is a lot of great content on disability travel, and it usually includes restrooms!
If we’re in town, my go-to is hotels. They’re centered on hospitality and have clean, accessible restrooms that are often rarely used.
Outdoor Adventure
When we’re outdoors, I search for places that have more accessible options. Most national, and many state, parks have accessible restrooms and even handicap porta-potties out on the trail.
Unfortunately, my son can’t transfer to a toilet. We’ll often do his catheter in the van and just limit our outdoor time to three or four hours at a shot. You’d be surprised how much fun you can have in the woods for just three hours. When we’re traveling without a vehicle, it’s helpful to stay somewhere in walking distance from the action so that we can go back to our room for the catheter.
I realize that may sound limiting to people who are used to exploring non-stop, but you get used to the little breaks in the day. They could even be a good way to build in some down time.
We’ve also been able to get closed system catheters. They’re pre-lubricated and include a bag to catch the urine. These can be great for when you can’t get to a bathroom right away. They go into insurance under the same code as any other catheter, so there’s no extra cost.
Enemas on Vacation
This one is actually pretty easy! We pack all of our things and just take it on the road (make sure it’s as dry as possible to avoid mold in closed spaces).
When we’re camping, we bring our own toilet. That way, even if we’re in a nicer campground, my son can stay at our campsite while we do his enema. We started with this regular camping toilet, but because of core strength, we had some tip-overs. GROSS. Now we’re upgrading with a handicap toilet (just line the bucket). There are options, but you’ll want to make sure it’s foldable for travel!
Most medical suppliers can easily change your shipping address, so you can travel long-term domestically and just ship your enema supplies where you need them – even if it’s a different place each month. This is trickier if you’re traveling overseas. You can have them shipped to someone at home who can then mail them to you, but that takes either a lot of shipping time, or a lot of money, or both. It’s easier if you travel for less than a month, and plan to leave just after a shipment has arrived.
Traveling with a Shunt
First, know that there are no added inherent risks in flying or traveling. While air pressure and such may cause discomfort, it’s not a heightened risk from any other child.
Second, know that you’re not alone. Moms have taken their hydro kids all over the world, and have great things to say about it!
My son doesn’t have a shunt, so I don’t have any first-hand experience with this. Previously, I shared content from another mom with better expertise. The article covers risks to be prepared for, and includes information on finding neurosurgeons around the world.
Electrical Spinal Stimulation and other Routines
If you can handle it in the chaos of home, you can handle it in the chaos of travel. This often means a shorter travel day, because some of those routines need to be done at home. A shorter travel day is still a beautiful travel day. In fact, with young kids, this may be a good way to keep us from pushing them too hard, anyway.
We do one or two rounds of spinal stimulation during the enema, to double the use of that time. My son can’t wear his braces with the electrodes on his feet or calves, so we have to do those two at our room OR while we’re traveling. Long drives/flights are a great time for getting spinal stimulation done without braces. We have a fanny pack and take the tens unit on the go for his stomach and behind.
There’s a variety of medical routines that fall into this same category. If you can take it on the go, great. If not, set some time aside in your travel day to get it in. Losing an hour is not giving up the day.
Managing Therapies
Your physical therapist can give you exercises to do on the go that are often more productive than time practicing in the hospital. We typical rotate between PT and OT, with 12 week sessions of each. Sometimes we plan for a week in between – which makes a great time to get away without missing anything.
Similar to education, life is learning – you don’t miss as much from traveling as you might think. In fact, it’s often better. We typically get more exercise in when we’re traveling, because we spend the full day exploring, instead of in the confines of our house.
School Schedules
This one depends heavily on your school. I hear from a lot of families that they talk to their child’s teacher about where they’re going and turn their trip into a type of independent study. I hope that’s your school!
Shortly after Covid closures, it was easy to take our school with us and do it online. That may still be the case for your school.
Our school is really uptight about missed days. We get five excused absences for educational excursions. Period. No exceptions. No long-term travel. We choose those days wisely, usually adding on to an already long weekend or holiday.
Long-Term Travel and Medications
This depends on the medication. Some of our medications we’re able to just refill early. Some, if it hasn’t been the full month, we have to pay for out of pocket. This is another instance where it’s helpful to either have someone mail you your medications, or to travel around your refill schedule. That sounds difficult to me, because we’re already so limited by school, but I know a lot of people who do that. If that sounds like your best option, you can connect with @accessible.adventures on Instagram to learn about how she does that!
We’ve found that our copay is still pretty low if we refill early (one is $3, and the other was around $40), so it may be worth it.
Packing Gear and Supplies for Flying
The normal rules do not apply to you.
You’re allowed an additional carry-on for medical necessities (even if your ticket doesn’t include a carry-on). That carry-on can also have liquids, if they’re necessary. You’ll need a little extra time going through security because your liquids will have to be scanned. You’re the one who determines what liquids are necessary.
The only time we’ve had any issues was traveling with dish soap for a cone enema. Each TSA worker asked why it was medically necessary. I’d explain how it makes his intestines contract to push the poop through, the TSA worker would get wide-eyed and call for his supervisor. This went up four levels of supervisors before they just shook their heads and let us through.
Accessibility
Ok, I said this wasn’t about accessibility, but that’s a part of the package, too. My big go-tos are disability travel blogs for both inspiration and information. Check out people like Simply Emma, The Chronic Traveller, Curb Free with Cory Lee, and, of course, Wonders Within Reach. If you’re already set on a destination, google “Accessible _____ (destination)” and the chances are high that someone has gone before you.
Here are some of the most accessible places we visited last year.
If you’re traveling within the U.S. Travelability has a map that compiles all of this information for accessible destinations!
Some apps, like GoWhee, allow you to filter family destinations by accessibility.
If you absolutely hit a wall, do the hard thing and call the destination with any remaining questions.
Just Try It
I realize that this sounds like a lot, but I’ve found that the level of chaos doesn’t change – it just moves locations. If you’re nervous, start small. Try a staycation at a local hotel and be a tourist in your home town. You can do the same with camping – start somewhere where you can run home for anything you forgot.
I won’t lie: it isn’t easy. BUT, it’s also always been worth it. We’ve never been on a trip that I wish we hadn’t.
If there’s anything I’m missing, or that you’re nervous about, don’t hesitate to reach out! You can reach me by email or connect on IG.