One of the gifts of having a child with insomnia is that circadian rhythms are not limited to time zones.
Meltdowns happen at home.
Meltdowns happen in Kauai.
I'll take the meltdowns in Kauai..
I would rather let the world see my family's crazy so that I can see the world.
We have taken our daughter with Angelman’s syndrome all around the world. From the heights of the Burj Kalifa to the depths of the salt mines in Romania, we have made traveling with special needs a priority for our family. Our other daughter has multiple food allergies (wheat, dairy, eggs, and nuts to name a few). Traveling is difficult. But we have been traveling with both of our children since they were six weeks old.
It all started because we were so overwhelmed with parenting. Traveling was our coping mechanism. We didn’t have family around locally to support our addiction, so we learned to travel as a family unit.
One of the beautiful things we experienced traveling internationally is that everyone in our family is limited by language. My non-verbal daughter experiences this frustration with communication everyday. Internationally, we are on the same playing field as her. We rely on body language. We use an AAC (assistive augmentative communication) device called google translate.
Traveling is beautiful. But the honest truth is, it is difficult to travel with special needs.
Traveling with special needs is uncomfortable. Sometimes it feels like a thousand paper cuts to arrive at the beach. It isn't until the sand is felt between my toes that I can relax, and even then, the salt water still stings.
Traveling with a special needs family is not for everyone. Not all special needs are the same.
For the child who is rigid to an exact schedule, traveling may not be worth it.
For the parents who need a predictable routine to survive, it’s okay to stay grounded.
You aren’t a bad parent if you can’t travel.
You are a wise parent who knows her limits.
It's okay to stay home.
We are a family that barely survives each day. We just haven’t accepted that disability will stop our travel experiences. Instead, we have accepted the limitations that we will work around. We choose the places around the world that accommodate our family’s needs.
We are a special needs family that prioritizes travel.
So how do we do it? We manage our expectations before we step on a plane. The more realistic they are, the better we cope with travel curveballs.
What should you expect when you travel with your little crazies?
Expect to be the spectacle. Yes, you will get curious stares. It happens locally and it happens internationally. There are both kind and clueless strangers all over the world. If you care about being socially appropriate, then traveling is not for you. But if you can laugh at yourself instead of getting embarrassed- traveling is for you.
Expect to be triggered. There will be “typical” families traveling alongside you that make it look easy. They can do activities that your family cannot. You can let the comparison trigger you or let it go. You choose your "island" - the comfort of your own home or the one with real palm trees. I choose the real island and deal with my triggers. Sometimes our family splits up in order to do the activities that we want to accomplish. It isn’t picture perfect family time and it is okay. Digital editing was made for families like ours.
Expect worst case scenarios. We plan our locations based on proximity to a major hospital. One suitcase is full of our daughters’ seizure medications, epi-pens, and steroid creams. Another suitcase is full of allergen-free food for other daughter in case we cannot find her foods at local supermarkets. We bring a letter (in the local language) of allergens for each restaurant to review before we sit down to eat. We plan for worst case scenarios so that we aren't afraid of them.
Expect expense. A caravan of luggage is dragged with us wherever we go. We stay at an airbnb so that we can fully relax without the stares of everyone around us. If restaurants cannot accommodate allergies, we have a kitchen available to prepare food. If we have blowouts, we have a washing machine.. We upgrade whenever possible. It is not economical. We just budget around it.
Expect a family bed. Our child has a flight risk, so we sleep with her. We don't want to be in the news for a foreign escapologist.. Yes, there are transitional issues when we get home. We just deal with the aftermath later during re-entry. It’s worth it for us.
Expect the world to not be handicap accessible. The world is not built for wheelchairs with all of its ancient ruins and cobblestone. Old buildings do not have elevators. Historic tours often involve stairs. So plan out your radius and activities based on your limitations. I would love to say that we are limitless when we travel - but that just wouldn’t be true. We have learned to be resourceful with how much we can do.
It's overwhelming.
So why would we even leave our comfy home bubbles to see the world?
Because the world needs to see your family.
And we need the world to see our families.
Our kind of family matters.
If you go into traveling with your eyes wide open, you will see amazing places in the world. You will have memorable experiences for all of your family. And the world may shift their perspective about disability when they see how you do it. It will be uncomfortable. And it will be okay.
Getting over our discomfort helps our children get over theirs.
If you are uncomfortable with travel, they will be too. But if you love how travel can break up your Groundhog Day routine, they may even love it too.
Bon voyage, my fellow travelers! I hope you find the courage to do what feels impossible. May you have fantastic memories along with the frenzied ones!
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