The very first day of my son’s life, when he was merely hours old, I was looking at his tiny, beautiful face and wondering what the future would hold. It seems almost absurd to me now, but I remember thinking, “I wonder if we’ll still be able to travel….” You see, he had a surprise diagnosis of Down syndrome at birth, and given that I had very little experience with Down syndrome or intellectual/developmental disability (plus, I was swimming in a sea of raging postpartum hormones), I was trying to figure out what it all meant for our family life.
I should’ve been worrying about other things, right? Like congenital heart defects, the long-term outlook for people with disabilities, and any of a number of other issues. But I wasn’t. That was too much to handle right away. Instead, my brain settled on wondering how this surprise extra chromosome was going to impact one of the things we treasure most as a family: traveling together.
Travel, you see, is our lifeline. My husband’s job is fairly stressful—he enjoys it, but it’s stressful. I work at home, so I can never really escape work unless I physically leave the house. Otherwise, the work is always there, staring at me. And our then-four-year-old son was an adventurer, not content to sit at home, always in search of his next adventure. For the three of us, travel was a welcome break and a definite bonding experience. It was what we looked forward to most each year—even if our budget for that year meant a small, modest road trip rather than anything particularly glamorous.
A month after Sam was born, with his surprise Down syndrome diagnosis, we got another piece of news: Our older son, Theo, was autistic. This wasn’t a huge surprise—we’d long known he was a unique, quirky, intense soul. The diagnosis just kind of cemented it, and one thing I did when we learned of it was to join some online groups of parents with kids on the autism spectrum.
I realized, in joining those groups, that a fair number of parents just didn’t travel with their kids. It was too much stress. Kids on the autism spectrum often have trouble transitioning or breaking out of routines that are comfortable to them, and a lot of families seemed to stay at home rather than face the potential stresses of traveling with their child or children. When they would decide to travel, they’d often ask for advice as to how to make the trip as successful as possible. And so, I finally got the idea that I should write a blog post about this.
Let me say, first of all, that every child is different, and I do not profess to be some sort of all-knowing person about traveling with kids with disabilities. I can tell you what works with my two neurodiverse kids, and perhaps that will be of some help to you. But you know your child better than I do, so take what’s useful to you and ignore what’s not!
Second, both of my kids have developmental (and intellectual, in the case of Sam) disabilities. Neither one has a physical disability, so I am not the person to ask about traveling with a wheelchair, supplementary oxygen, or any other gear associated with physical disabilities. I will say that being a part of the disability community has definitely made me notice accessibility issues more than I did before, but I definitely do not notice it as much as a person with a physical disability would. I suspect there are probably great resources out there specifically about travel and physical disabilities.
With that said, here’s some of what we’ve learned as we’ve traveled over the past nine years—with Theo, and with Sam for the past five of those years.
My aunt once passed along to me something she had read, and it is my go-to mantra whenever travel feels challenging. She read that when you’re traveling with children, you shouldn’t expect your trip to necessarily be relaxing and sometimes not even particularly fun, but that it should just be different from your everyday life.
I cannot tell you how many times that advice has soothed us at the end of a long day, when we’ve spent money on some travel event that turned out to be an utter flop. “Well, it wasn’t easy, and I sure wouldn’t say it was fun, but at least it was a different experience for us,” we’ll say to each other. And then it doesn’t feel like a failure—it just feels like a piece of the bigger picture. A piece we won’t likely repeat, but a lesson learned.
Houses versus Hotels
My kids both love hotels. What’s not to love? There’s often an elevator (big hit with both of mine), often a swimming pool, often a free breakfast buffet. They love it! But we don’t necessarily love it. A hotel means cramming everyone in one room, because we surely can’t afford to buy two rooms each time we stay in a hotel. One of our two kids is particularly challenging to get to sleep sometimes, and that’s compounded when we’re all in one room. Plus, it means Chris and I pretty much have to go to bed at the same time as the boys—when you’re all in one room, it’s not like the adults can sit up talking after the kids are in bed.
So, we now rent houses/apartments if we’re going to be in a place for more than two days or so. The cost is usually fairly comparable to a hotel, and we get a lot of side benefits. The boys can have their own rooms (or they can share one, depending on the property). We have space to relax at night after they’re in bed. There is often more than one bathroom, which is helpful when you have four people who all need to go to the bathroom at once. There’s almost always a kitchen, which means we can prepare some meals at home—which saves money and keeps us from having to drag the kids to restaurants every meal. Both of our kids tend not to be at their best at dinner time, and taking them to a restaurant can be, um, unpleasant. Being able to just pick up some simple food and prepare dinner at home is a huge benefit to us.
If we’re driving and particularly if we rent a house/apartment, it’s easy to bring along a few creature comforts that make our boys feel at home and settle into their new digs better. We usually bring a white-noise machine that they use to sleep at home, plus their nightlight. One has a stuffed animal he’s attached to. The other has a blanket he generally has in his bed that we try to bring. Sometimes we’ll pick a toy or two to make them feel at home, too. All of this is much easier when we do a driving trip, because we can just throw stuff in the van. Checking luggage for a flight means not necessarily having the room to put in extras like nightlights and special toys.
Another thing that has helped us tremendously is adjusting our expectations for what we want to do on vacation. In the old days, when it was just Chris and me, we loved finding quaint little towns or college towns, wandering into bookstores there, poking around at antique-type shops, and relaxing with a cup of coffee. Does any of this happen with our kids? No sirreee!! We have active boys who are not the type to sit and look at books for twenty minutes while mom and dad browse. And taking small boys into antique shops is just a recipe for disaster, in my opinion. So we don’t even try it.
Instead, we balance kid-friendly activities with a few things we like. For example, on this last vacation, both boys wanted to ride bikes as much as possible. (Well, Sam was riding in a trailer, but he loved it. And Theo was a biking madman!) Chris and I wanted a good cup of coffee. So we compromised and rode bikes down to a coffee house. We sat outside and enjoyed coffee while the boys played in the town square, and then we hopped back on the bikes for another ride.
Often, we end up spending a large chunk of time at a kid-friendly science museum or something along those lines. That’s somewhat fun for Chris and me—we like science as much as the next person—but is it something we’d do without kids? Probably not. So if we plan a kid-centric activity like that for the boys, we’ll then mix in something for us after—maybe we’ll pick a restaurant we like for lunch. And if the peanut gallery complains, we’ll say, “The morning activity was for you; now lunch is for us. I’m sure you’ll find something you like on the menu.” And inevitably, they do.
The point being, I think we’d feel frustrated if our vacation was all about the kids and nothing about us, so we try to make it a balance—a lot of stuff the kids like, with some bits for Chris and me mixed in.
We have also learned that one main activity a day is usually all they can really handle. So we rarely plan to, say, go to a museum in the morning and then head to another event in the afternoon. Instead, we’ll plan one main event for the day, and everything else will be easygoing and simple. Yes, that sometimes means we miss out on doing a few things we might’ve wanted to do. But in the long run, it makes for happier kids and more relaxed parents.
Flexibility and Secrecy
As I mentioned earlier, it’s not uncommon for kids on the autism spectrum to have difficulty with changes in plans or transitions. It’s also not uncommon for kids with Down syndrome to have the same difficulty. So one thing we’ve learned is to hide our plans from the kids until we’re sure they’ll happen. We’ve learned the hard way that if we say we’re going to do something (say, go to an air museum) and then the plans have to change for whatever reason, it’s likely to cause incredible frustration in the kids. So no matter how much they nag (well, the verbal one of our two, that is), we generally won’t tell them the plan until we’re certain it’s going to happen.
Along the same lines, when we do reveal the plan, we usually follow it up with “That’s a plan, not a promise. It could change.” It doesn’t alleviate all frustration if plans change, certainly—but it seems to help a bit.
Take Advantage of Freebies and Benefits
Did you know if your child has a disability, he or she is entitled to a lifetime National Parks pass, good for the child and up to three guests? Chris and I joke that doctors really should mention this silver lining when they deliver a prenatal diagnosis: “Your child will be born with Down syndrome, but hey—free lifetime access to the National Park system! Congratulations!”
In all seriousness, there are a lot of little freebies and benefits you can get if your child has a disability. Disney parks are great about issuing disability passes, for example.
Honestly, I encourage you to take advantage of all such perks. We felt slightly guilty about doing the Disney pass, given that we tend to view our kids’ disabilities as rather minor in the grand scheme of things. But we ended up doing the disability pass at Disneyland, and I have to say, we’ll do it every time now! It doesn’t give you a free pass to cut in line at the rides (which I would personally feel super guilty about!); it just allows you to make a reservation for the ride so that your kid doesn’t have to stand in line and you can come back at the allotted time. So you’re still waiting for the ride just like anyone else, but you have a little more flexibility for kids who have trouble waiting in lines. Theo has some sensory issues that make it very, very hard for him to stand still, particularly in a crowd, so it was a godsend.
These little perks make your life a bit easier when traveling with kids with disabilities, but they also sometimes mean that if you end up having an outing that’s a complete disaster, you don’t feel so bad about fleeing. Take the National Parks, for example. It’s not cheap to get into them, so if your kid had a meltdown fifteen minutes in and you had to leave, you might be frustrated that you had spent the money for essentially nothing. But if you hadn’t spent the money because the entry was free…well, suddenly it’s not really a big deal if your child’s meltdown means you need to leave.
I feel the same way about reciprocal museum memberships. We have one to our local wildlife museum, and it gets us into other science and wildlife museums for free or a heavily discounted rate. It has come in so handy, and it means that if the kids are overloaded and we have to leave after thirty minutes or an hour, no biggie.
Less Is More
Both of my kids are neurodiverse, so I really can’t say what traveling with a typical child is like. This one might be more of just a kid thing than a neurodiverse-kid thing. But regardless, we’ve found that less is often more. If we try to pack too much into a vacation, it just ends up being stressful. The simplest, cheapest, lowest-key outings are often the most successful with my kids. One mother I know mentioned once that while in Hawaii, she spent a significant amount of money to pay for her son to have a “swim with the dolphins” experience. Her son ended up hating it, and she was disappointed that she had spent the money for something he didn’t like.
We, too, have had similar experiences, where the most expensive things don’t always end up appealing to our kids. But take them to a free local park, and they’re happy as clams. The $2 shuttle ride to the top of a lava cone recently was a big hit with both and cost us a total of $6 (Sam was free). Tiny local museums are often inexpensive and much less overwhelming than large, nationally known museums, and both of our kids seem to like them just as well.
In fact, we’ve noticed this to be the case so often that while planning our eight-week Epic Road Trip for next summer, we’re actually making it a Lesser-Known Sights vacation. We’re planning to make use of that free National Parks pass as much as possible, as well as reciprocal museum memberships, but we’re mainly focusing on lesser-known spots. We are planning to visit Yellowstone, but a lot of our other planned stops are in much smaller, much less traveled spots. In the long run, I think we’ll all be happier with that.
If you’re intimidated and wondering whether your child can really handle a trip, why not start small? Plan a small, inexpensive, low-key weekend trip and see how your child does. It’s only a weekend, right? What’s the worst that can happen?
By that same token, though, remember…
Allow Time to Settle In
Both of our kids require some adjustment time. Sam screams bloody murder the minute we pull up to a new rental house every…single…time. And Theo can often be a handful for the first day or two of a trip. But both of them settle in. Try not to feel like it’s a disaster if the first day or so is rough. While I’m sure there are probably kids who really don’t like traveling and would prefer to just be at home, my own experience is that both of my kids settle in just fine—they just need a bit of time.
I hope some of this is of some help to you. Honestly, I think a lot of it is just traveling with kids—neurodiverse or not. As my aunt wisely pointed out, it’s not necessarily easy, but at least it’s different.
And despite any challenges, my two little knuckleheads seem to love it.