Travel with an Invisible Disability
I wrote a post on traveling with a disability in Budapest that is focused on physical access but touches on deaf, blind and other access. But I realized after I wrote it that I didn’t cover a lot of things that I actually do while traveling, and how I make things work for myself with an invisibility disability when traveling (with my C-PTSD, TBI, deaf), for Moxie (with Down syndrome) and for Micah (with Asperger’s). And I need to finish telling the story of Budapest, so I’ll do that all in this post.
You can, however, jump to the end of this post for the summary with lists of everything that I use for travel with an invisible disability.
Why I Came to Travel to Budapest in the First Place
To recap: I was originally going to go to Europe with my mom and my 3 little kids. My mom changed her plans last minute, and decided to meet us much later in the trip. With Eurail passes already purchased, I decided rather spontaneously to go to Budapest.
I booked an Air B n’ B and reserved a night train while I was in Amsterdam, and without knowing much more about Budapest, left.
After arriving, I slammed up against grumpy people and things were looking kind of grim. But then I met a deaf lady….
Connecting with Locals in Budapest
Meeting the deaf lady in the train diner in Lahel Ter was a modern day version of meeting a fairy who sprinkled stardust over the world and caused all the smiling rainbows and unicorns to appear. Because everything after that was just great.
Budapest shimmered, people weren’t as grumpy and we made friends.
We went to some famous places
Szechenyi Baths with an Invisible Disability (and Kids!)
It was incredible and all that it seemed it would be. Like bathing in a freaking palace, complete with multiple baths, pools, whirlpools and water jets.
In terms of all of our disabilities, the most challenging piece was staying together.
Moxie does not bolt anymore, but I don’t think I’ll ever really recover from her doing so.
Her suit is neon-rainbow for a reason: it’s easy for me to spot her in it. I also kept her – and the boys – by me for the whole time.
The water means no hearing aids for me, which is fine with the kids, but makes communication with anyone else more difficult (as then I am relying 100% on lipreading, which, as we all know, is an imperfect science).
Unable to go to the bathroom when there is a bathroom stop right there (but then desperately needing to 5 minutes later when there are no toilets around), hard squabblers, occasional whiners. But one thing they sure have down is bathing in hot water!
They are pretty amazing in how adept they are in the baths, how much they visibly enjoy a good soak in quality mineral water.
Both Moxie and Micah’s disabilities lend them a propensity and strong attraction for and with water, but I think that all of the visits we’ve made to hot springs since they were babies have done a lot in developing their hot tub skills.
It cracks me up in how they turn in to little reincarnations of Japanese old people when they get into a hot bath – all, “aaaaaaaaah” and go silent except for an occasional sigh of delight.
Up the Funicular Tram in Budapest
Travel with an Invisible Disability at the Budapest Castle
I’m not one for touristy stuff.
Big crowds wear me out and when I’m worn out, my hearing shuts off and I shut down.
By “shut down,” I mean that my TBI goes into overdrive, I can’t remember much, I get disoriented easily, I can also easily be triggered.
Being prepared goes a long way. That’s both in mental preparation (- just psyching myself up for something that I know is coming), and actual physical preparations. I knew there would be crowds for the castle and funicular tram, and I was as prepared as I could be.
Which by “prepared” means that my watch was programmed to nudge me to breathe more, I was extra set for the day so there would be no hiccups or melt downs from the kids that I’d need to deal with as I myself was having a hard time from triggers (- so, set up with lots of water, enough cash, snacks, zip fizz, external battery charger, extra tram tickets, map apps set with directions).
All the things!
I feel like I should already have received a Master’s Degree in Organizational Motherhood.
I was feeling so prepared and full of Mommy With It-Ness that I decided to chance going into the art museum in the castle.
The Art Museum in the Budapest Castle
When I was a kid, I could (and would) stand in front of paintings for hours. There was so much in it all that I wanted to absorb, right down to brush strokes and light capture.
My parents were unfailingly indulgent with me in this and let me stay as long as possible, only gently peeling me away when the museum was closing or we were going to miss the last train back.
I still love museums to that degree, so of course I had to try. Now, I’m saying, “try” because my kids haven’t really been to museums. I mean, they live in Hilo, Hawai’i – small town in the middle of the Pacific Ocean and before that, they were in a yurt off the grid on the Lost Coast.
Art, they’ve seen and practiced plenty. Museums are kind of a foreign concept for them.
So there they were, all, “MOMMY THAT LADY IS NAKED!!” – with Micah’s eyes widening and looking quickly away and shying his head so he wouldn’t see anymore, walking by fast and Mack and Moxie planting themselves in front of any and all naked paintings
They were loud! They ran around! They got the guards really worried!
I do think that it would have been awesome if it had been more interactive with kids (like a scavenger hunt for finding some paintings? Kid-friendly information on paintings?)
Or maybe if I knew more about it all and could provide that myself.
I think I got some love of it all lightly slathered on for them, I think they like art museums more than they did to start with, so I’ll take it as a win.
Last Slices of Budapest
Budapest is a beautiful city.
It has a way to go with regard to disability access, and it’s worth going – as in, it’s worth going that extra mile and implementing everything it can to become accessible, because the city itself is so beautiful.
Everyone should be able to enjoy this place, and to connect with the lovely people who live here.
It’s true that Budapest started off rough for us – so much so that I was wondering if we should even stay.
But it ended up so, so sweet. We didn’t want to leave.
How to Travel with an Invisible Disability
Travel Tips for Traveling with Specific Invisible Disability
Obviously, I can’t cover everyone’s invisible disability. I am a seasoned traveler though, and I know the disabilities that I experience with my family very well, and how we “do it” – how we make travel such an enjoyable experience for all of us.
A lot of what I do is unconscious: I just know it works and I do it without a lot of planning, it’s second nature. I had to really stop and think some of these through for you to articulate exactly WHAT I do for my kids and myself, and WHY I do it.
If you have any specific travel questions or you are stumped in trying to make something work for you or your child, please email me and I’d be glad to help.
- Information: my son has Asperger’s and one of the most important pieces in keeping him neutral and happy is for him to have as much information as possible in advance or when there. So, we read up as much as possible about a place in advance, and most importantly, we get a map of the place upon arrival. If they don’t give out maps, I take a photo of the map where I can find it for him, or take a screenshot of a map in an app.
- Rules: he wants to know what the rules are, always, and we go over those too, whenever present for his ease of mind.
- Snacks, water, breaks: Snacks, water and breaks are an integral part of keeping meltdowns at bay. I can’t stress how important this is!
- Processing: he needs to have extra processing for everything we do. So, if we finish going to a museum, for example, I’ll get the kids an ice-cream (- which is a snack and a break) and talk about what happened, what was their favorite part, least favorite part, etc. Then, having wrapped up that activity, we talk about what’s next, the next plan, and look at the map, give him lots of structure.
- Escaping or Bolting: my daughter has Down syndrome and while she no longer bolts, I use these tips for traveling with her. This is not specific to international travel (- I do it while at home at Target too), but I periodically call a family meeting (where we group together in a huddle) and have the children repeat after me, “we stay together.” “We are a team.” “We do not wander off.” “We stay together.” “We are calm.” “We stay together.” (- yes, lots of repetition!). I do this whenever I think it’s likely to get kind of crazy, or when they are excited, or when I think they might be inclined to run off. I also do this when they’ve already done just that, so we can re-group.
- Stranger interaction: she doesn’t have a lot of boundaries with strangers, so I make sure to keep her by me. In some cases, I’ll let her go ahead of me, as long as she is in easy sight and I know I can reach her in a few seconds if needed.
- Clear communication: I give her many “first, then” conversations. “First we go to that pool, then we go to that one.” and so forth. The more clear everything is laid out (and this goes for my son with Asperger’s as well), then the less likely a meltdown will occur.
- Deep breaths: my daughter can be enraged by something her little brother does (or something else!), and will start shrieking or hitting him or the table or is tempted to throw something. We work on deep breaths, and calm downs. Then I try to figure out what is going on. She often does not have words for her rage or the injustice of what just occurred, so it’s helpful if we can breathe, calm down, then figure out how to move forward before it escalates..
I’m deaf and my kids and I are still learning ASL.
- Lipreading: They are aware when I take my hearing aids out and I’m relying solely on lipreading. While this is not an issue in communicating with them (because I’m used to the way their mouths move), it’s extra important that my older son (with Asperger’s) stays close so he can tell me if he hears something important (like on a loudspeaker or someone announces something, or asks a question).
- General communication: my son does tell me when someone says something and I didn’t hear it (- even with hearing aids on), or as a general “translation.” This Is a great role for him, because he likes to be in charge, and he likes to know what is happening.
- Printed material/visuals: in general though, I always use apps or printed materials. I read my way through traveling and it’s really not a big deal. I feel like international travel is absolutely ideal for deaf people, because we tend to be so visual and also tend to be absolutely fantastic with nonverbal communication. In international travel, there is usually a language barrier and most people (who are not Americans) don’t expect you to know their language. I think there is a distinct deaf advantage, in being skilled at figuring out what is going on when you don’t hear or understand the verbiage.
C-PTSD and TBI
I have chronic post traumatic stress disorder and traumatic brain injury.
In terms of traveling, this boils down to:
- Apps: I use a lot of apps! I use apps to remember to breathe, I use apps to remember things, take notes, keep things collected. I think the most important thing is for me to remember to breathe, because if I do, everything else comes together easier.
- Breaks and Rest: it seems like a no-brainer, but I have to remember to take breaks and get adequate rest so that I don’t get triggered or shut down.
It feels weird for me to say how to travel with an invisible disability, or to collect notes on what we do.
But the truth of the matter is that we DO have a lot of disability in our family and we DO enjoy traveling tremendously. I would love to see more families in the disability community traveling (especially internationally), so I hope some of these tips are helpful.