Have Disability, Will Travel

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We’re leaving for Europe soon. 

It occurred to me recently that this is kind of funny, with regard to disability.

All of us except for one person (- Mack, my youngest child), has a disability!

We’ve got my mom, who has an Acquired Brain Injury, PTSD, post concussion syndrome and dizziness and balance issues (related to her ABI). Then there is me, deaf neurodiverse. Micah has Asperger’s and Moxie has Down syndrome!

I feel like this is a great thing – our disabilities play off of each other well. I also feel like us traveling is really teaching the kids so many valuable lessons in accommodation, organization, planning, and preparation.

I’m eager to connect with disability community in Europe.

So far, I have only managed to strum up the cool Deaf Club in Amsterdam, and this interesting blind-experience museum in Nijmegan. If you know of any cool disability-related spaces in Netherlands, Germany, Sweden, Denmark, Scotland, and Ireland (the countries we are definitely going to), tell me!

Preparing for Travel When You Have a Disability

This is definitely part of our configurations.

We’ve got my stuff (for my C-PTSD, neurodiversity and TBI and my (lack of) hearing. Moxie’s Down syndrome (elopement), Micah’s Asperger’s (need for scheduling and structure) and for my mom.

I’m just going to use this post to talk about some of the things that we are considering as we get ready to travel around Europe together for 5 weeks.

Preparing for Travel with You Are Deaf or Have C-PTSD or TBI

I’ve been traveling for my entire life, and most of it on my own. I know it’s immodest, but I’m comfortable calling myself an expert traveler.

The things that I usually need to contend with when traveling solo are:

• flight changes: are invariably  announced over a loudspeaker, sans captions, and the airlines have yet to alert me to any change, despite my always disclosing with them!
• hearing aid issues: moisture or change in climate can get them to shut down, like that one time in Peru
• hearing aid batteries: like when I got stuck without in Macau and had to jet-foil over to Hong Kong for them! (this was in the 90’s; I’m sure Macau must have them by now)
• my memory: I need to things printed and be available in multiple formats
• triggers: I need coloring/collaging/journaling to help calm my triggers and/or music

When I travel with my kids, I just need to make sure I have all of this down and tight so that I can take care of them and still do what I need to do to take care of myself. For this particular trip, I’m not terribly concerned about hearing aid batteries. I know people wear hearing aids in Europe too! It’s more like, making sure that I have enough batteries for this trip (so we won’t have to spend a day tracking them down if I do run out).

My main concern was my Phonak Compilot. You see, I use these Phonak Compilot things which are hilariously alike a Star Trek communicator.

I can’t even begin to say how addicted to the Phonak Compilots I am and how important they are to me.

They connect sound directly into my hearing aids via bluetooth, and that means that I can talk on the phone, I can listen to Hawaiian music when the kids are stressing me out and I can actually participate in a guided meditation at any time. They keep my triggers from C-PTSD down, they allow me to fully participate.

My compilots have broken before, or had issues, and I am at the point now where I can’t function without it.

So I have two: one to use and one to charge and have as backup.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][vc_column_text]In terms of my memory, I started my lists and back-ups for plans, prints and more a long time ago to be able to adjust for things that I (or my mom) forget.

I check, check and re-check and it feels pretty solid, like we aren’t forgetting anything.

Preparing for Travel When Your Disability Changes

This has been a learning curve and adjustment for me in preparing to travel with my mom. You see, my disabilities (and Moxie’s and Micah’s) are pretty static. They don’t change, and I’ve had them for a long time and I’m very used to them.

My mom, on the other hand, has migraines has setbacks from her brain injury and post concussion syndrome. These affect her by the day – she can have a migraine or something else will set her off that will have her out for days. This means that we need to be really careful as we plan.

We need to:

• have a fairly flexible schedule with reservations that can be cancelled
• stay in an accessible venue: no stairs
• be in scent-free environments
• have our organic, healthy, sugar-free food with us (or access to health food)

Noise, light and commotion also adversely affect my mom, so noise cancelling headphones (and maybe backups) are super important, as are eye-masks and neck supports.

Preparing for Travel with a child with Down syndrome and Asperger’s

Moxie, who has Down syndrome, has no chronic illnesses or immune fragility. She’s a strong, healthy little tiger. It has been a long, long time since she has bolted or eloped or just run off. She seems to have outgrown it, but my own nervousness isn’t going away as easily!

I’m bringing the double BOB stroller again for this trip. It’s probably going to be our last run with it, but I intend to really milk it for all it’s worth in having a safe space for the little ones to be in.

Micah does not require much in the way of accommodation. He simply is most happy with a lot of structure and plans.

That’s pretty easy to work with: I just involve him every step of the way and he feels calm and in control.

Packing Light with Disabilities

We’re packing light. Since my mom has a chronic illness and the kids are all still pretty little, I will be doing most of the schlepping.

With that in mind, I have a sturdy suitcase with great rollers that the kids and I will use for all of our stuff. With my mom’s food issues in mind, we are bringing a spare small suitcase whereby we can tote non-perishables. My mom will also have a small suitcase with rollers.

I’m color coding the space bags for the kids and I, making it easy to find whomever’s underwear I’m going to be looking for.

Added to that, I’m downloading All.The.Books on kindle, audible, and the movies from Netflix. We’re going to be on 4 flights between Hawaii to Amsterdam, taking over 36 hours; I want to be will be as prepared as is humanely possible!

Read More Travel and Disability Posts!

• How to (and Why You Should) Travel with a Child with Down Syndrome
• The Road Less Traveled: the Connection Between Travelers and People with Disabilities
• Why Frida Kahlo Remains Relevant

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