Traveling Looks Different for Us and That’s Okay: Traveling with our daughter with Down syndrome and Autism

There was a time when the thought of traveling with my daughter filled me with anxiety. Not the typical parenting kind of anxiety. The kind where I would lie awake at night before a trip, running through every possible scenario in my head.

What if she runs out of the hotel room while I’m sleeping?

What if she damages something in the room?

What if she gets overwhelmed and spends most of the trip dysregulated?

What if all the planning, money, and effort end in stress and disappointment?

My daughter has Down syndrome and autism and requires significant support. She experiences the world differently than many people. New environments can be overwhelming. Changes in routine can be difficult. Safety concerns like elopement are always on my mind.

For years, I wondered if traveling was even worth it.

Sometimes I would look at pictures of other families on vacation and feel a sense of pressure. It seemed like everyone else was making magical memories, visiting attractions, and checking experiences off a list.

Meanwhile, I was worried about whether my child could even tolerate the hotel lobby. I was worried about whether she would sleep. Whether I would get any sleep. I was worried about whether she would enjoy any of it.

And if I’m being honest, I was worried about what other people would think.

Over time, though, something changed.

I stopped measuring success by what everyone else was doing. I stopped trying to force experiences that clearly weren’t working. I stopped chasing the version of a vacation I thought we were supposed to have.

Instead, I started paying attention to what my daughter actually enjoyed.

Sometimes that meant spending an hour watching the hotel elevator.

Sometimes it meant walking the same path over and over.

Sometimes it meant leaving an activity after ten minutes.

Sometimes it meant skipping the attraction entirely and spending the afternoon in the hotel room where she felt comfortable.

And you know what?

She was happy.

The more I let go of expectations, the more enjoyable travel became for all of us.

I learned that vacations don’t have to look a certain way to be meaningful.

The goal isn’t to make my daughter experience things the way I think she should experience them. The goal is to help her experience them in a way that works for her.

That doesn’t mean traveling is easy.

I still prepare. I still think through safety concerns. I still pack more than most families. I still create backup plans. I still choose our destinations carefully.

(One item that has given me peace of mind over the years is using portable door and window alarms when staying in hotels. Knowing that I have an extra layer of protection if my daughter tries to leave the room unexpectedly helps me sleep a little easier.)

And yes, there are still moments when I wonder if the trip is worth the effort.

But then I see my daughter’s face light up over something I never would have predicted.

I watch her explore a new place in her own way. I see her build confidence. I see our family making memories that belong to us, not the version of family travel that social media tells us it should be.

What I’ve learned is that adaptation isn’t giving up. It’s actually the opposite.

It’s figuring out how to make experiences accessible so that everyone can participate.

Sometimes that means shorter outings. Sometimes it means more breaks. Sometimes it means changing the plan entirely. Sometimes it means trying something new and discovering it wasn’t a good fit. And sometimes it means trying again anyway.

Because even when travel looks different for our family, it still has value.

It still creates memories. It still expands our world.

If you’re nervous about traveling with a child who has significant support needs, I understand.

The concerns are real. The planning is real. The exhaustion can be real.

But don’t let the pressure of doing things the “right” way keep you from trying.

Start small if you need to. Take the shorter trip. Leave early if necessary. Build in extra support. Bring the tools that help your family feel safe.

Most importantly, let go of the idea that a successful vacation has to look like everyone else’s.

The best trips we’ve taken weren’t the ones where everything went perfectly. They were the ones where we stopped worrying about expectations and started meeting our daughter where she was.

That’s when travel became less about what we thought the experience should be and more about enjoying it together.

– Carly