Like most families, we’ve been thinking about what we want to do when school gets out and summer vacation is in full swing. We have two young children, and our oldest daughter is disabled. Since the last time we traveled, our daughter has changed a lot. We are realizing more and more just how hard it is for families with disabled children to travel, especially as their children grow and age.
Last summer, my daughter had hip surgery that put her in a waist-down cast for six weeks, effectively grounding us. And the year before that, I was inching down the home stretch of pregnancy and we were moving. 10/10 do not recommend. Finally, this year we don’t have any major plans that would theoretically keep us from doing some fun things as a family. Personally, we would love to go to California to see some family and friends.
But before we get too excited and book a trip, we have to think about the logistics.
The Struggles of Traveling with a Disabled Child
Driving halfway across the country would take about 20 hours. Heck, half of that would just be getting through Texas. With my husband’s PTO considerations and generally loathing the sound of carseat-bound kids screaming to the Moana soundtrack, a three-hour flight sounds a lot more appealing.
But that appeal is lost pretty much immediately when I see the cost to fly our whole family to California. And if that wasn’t enough to deter us, I’ve been terrified to fly with my daughter’s brand new wheelchair ever since hearing horror stories from travelers whose custom wheelchairs were damaged by airlines.
So instead of flying with her new wheelchair, we’d buy a lightweight, foldable travel stroller, and because of my daughter’s size, we’d be shopping in the adaptive section (read: “special” super marked up section.)
The thing is, it wouldn’t look like a wheelchair. This has caused problems for us before. Once, airport security wouldn’t let my girl be patted down in her stroller, something TSA CARES never mentioned when we called two days before. I have a feeling if we’d had her actual wheelchair, they would have let her stay in it… but I’m not going to risk it.
That time, we carried her through security while her stroller was loaded onto the conveyor belt. But this is not really a great option for us anymore. Not with her growth and with her toddler brother, who runs into the most dangerous situations he can find.
Even if she was allowed to stay in her not-really-a-wheelchair, we’d still have to carry her onto the plane ourselves, carseat in tow, or at least bring our airline-approved strappy contraption since she can’t sit up on her own. And we’d still have no way to change her diaper on the airplane, which she would inevitably leak through. Let me tell you, the stash of burp cloths I keep in my diaper bag might as well be a couple of sheets of one-ply toilet paper under my urine-soaked child. And that is not something I care to experience (again).
How Do Other Families Do It?
The trouble with traveling is that our home is filled with equipment that my daughter relies on. Even though her list is fairly short compared to some other families with disabled children, at home we have a wheelchair, special seating, bath chair, a bed she can’t roll out of, DME-supplied diapers, and so many other conveniences. Except they aren’t just convenient. They’re necessary.
My mother-in-law was still trying to find a way to make it work. A few times she asked the question, Well, how do other families travel?
A few months ago, we were at a get-together that included my friend and fellow disability parent, Elizabeth. (I’m sure you’ve read some of her posts about her own experiences.) Her son is a few years older than my daughter so my mother-in-law asked her the same question.
Her answer?
We don’t.
A Complex Life Makes Travel Complex
I am not trying to be cynical. And I’m also not saying it’s totally impossible for families with disabled children to travel. But our circumstances have forced us to not only be realistic, but also to prepare for every situation. There are a ton of variables to consider. If we forget something we need, we don’t always have the luxury of picking it up at the closest Target.
Besides all of our equipment, my daughter takes controlled medicines that can only be refilled every 30 days (which we had to spend months conditioning our pharmacy to even carry). We have to pack emergency meds that probably and hopefully won’t even get used. We have therapies she’d miss and appointments we’d have to reschedule that sometimes take months to get in the first place. And we have routines that help me maintain my sanity, even if just barely.
Sure, (lack of) accessibility plays a big role in our travel plans, but maybe an even bigger part is that our life is complex. We can’t just simplify or “play it by ear”.
So this year, our biggest family trip will probably be traveling to San Antonio to check out Morgan’s Wonderland, a park designed specifically for people with disabilities. And the rest of the time, we’ll be here in Houston. If you need us, you’ll find us in the pool or anywhere there’s air conditioning. I will also now be accepting donations for a personal pebble ice machine as our family enjoys our summer staycation.
About Lauren Weaver
Lauren found her way to Houston in 2018 with her husband, Collin, and their daughter, Emerson. They came here for Emerson’s medical care, who was born with a rare gene mutation that most doctors haven’t even heard of. They welcomed their rainbow baby, Rhett, into their family two years later. Lauren likes oversharing about hard things. These include disability and accessibility, mental health, and all the uncomfortable, messy parts of motherhood that not everyone likes to talk about. You can find her on Instagram @laurenbweaver.
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I just stumbled across your story. Bless your heart and your beautiful baby’s, too.
I hope you’ve already been in touch with Retts foundation.
A young friend of mine has a daughter who has Retts, too. I contribute to them.