Melody is a mother of four, labor and delivery nurse by night and adventurer by day. Melody and her family are on a mission to hike in all the national parks in the US. She advocates for her daughter, Ruby, who has Down syndrome, and encourages families of children with special needs to get outdoors, travel and have an adventure.
Having a child with Down syndrome opened up the world to us and gave us the courage to try new things and travel to new places.
We never imagined that we would become a family that travels all over the U.S. with our four children.
Because of our 5-year-old daughter, Ruby, and our vacation experiences as a family, we hope that we can encourage all families—especially those traveling with kids with Down syndrome and special needs—to get out, have an adventure and see the world.
It has brought our family closer and taught us how to work together.
While I know that traveling with a child who has special needs is different, we want to make it a little easier for other families by sharing our story and travel tips for kids with Down syndrome.
What It’s Like Traveling with a Child with Down Syndrome
When Ruby was nine months old, we took her to Yellowstone National Park.
I put her in the cheapest hiking backpack I could find, threw her on my back and had the most amazing feeling come over me. I was hooked.
Fast-forward to today: We now have a national park travel tradition in our family. It started with a simple goal of getting there and maybe doing a hike or two.
Ruby is now 5 years old and so far, we’ve been to 28 national parks and 27 national monuments and historic sites since she was born! And we’ve all been loving these special, memorable family adventures together.
With each new national park destination, I realized that Ruby was starting to develop her skills more and was not afraid to push her own boundaries. She just went for everything.
Once she learned to walk, we couldn’t stop her. We would try a new outdoor activity, and she would love it.
We would take longer family road trips, and she would be fine in the car and cope well with the travel. I learned that her disability wasn’t limiting her; we were.
We were letting her diagnosis limit what we tried to do. And we have since changed our mindset.
Now, we just want to get out and try it all. Why not go rappelling? Why not take a family ski trip? All the things I thought we could never do as a family because I believed we couldn’t. Ruby taught me that we could try.
She actually loves road trips and packing her own backpack with her favorite toys now.
We learned that her diagnosis doesn’t define her, and it doesn’t have to define what we do as a family.
Before I get to my three tips for families who are traveling with kids with Down syndrome, here’s how it all started.
I first found out we were having a child with special needs when the phone rang and woke me up after my night shift (I’m a labor and delivery nurse). I was surprised to see that it was my OB (obstetrician) calling.
He wanted to give me the results of the prenatal testing I had done at 11 weeks of pregnancy. He said, “Your screen came back positive for trisomy 21.”
I should have known what that was, but my mind was blank. I didn’t have a clue.
“Which one is that again?” I asked.
“Down syndrome,” he replied.
My heart sank. I didn’t have words. I wanted to cry but didn’t know how to react, so I calmly discussed what my prenatal care would look like moving forward and hung up.
Then the tears came.
Why was this happening to me? How on earth could I take care of a child with medical problems when I could barely take care of the three children I already had?
I work full-time nights, I’m tired all the time and I don’t have the strength. I cried. I ugly cried. I screamed.
My children came up to see what was wrong, and I told them to go away and leave me alone. I honestly felt that my life was over.
When I told my husband, we cried together. We honestly had no idea what to expect.
I understood the medical implications of having a child with Down syndrome, but I didn’t know anyone raising a child with Down syndrome.
We knew having a child with special needs would bring changes to our family. But we thought that it meant we would be stuck at home all the time.
We assumed that her medical needs would prevent us from being adventurous. That our lives would revolve around our child’s disability.
So, we wanted to give the kids “one last vacation.” At least, that’s what we thought at the time.
We decided to take the kids to visit Zion National Park and other areas in southern Utah, all to go and have some fun before the baby came.
At the hotel one morning, we were at breakfast when I saw a family with a child in a wheelchair. They were planning to have a fun day in the national park just like us.
And it hit me.
I realized as I watched them, that if they had a child who was traveling with disabilities and going out to have fun in the park and enjoy the outdoors, we could, too.
It was all about our mindset and determination. After experiencing Zion National Park and hiking with the kids, I was determined to continue this adventure.
I just needed to learn how.
3 Tips for Traveling with a Child with Down Syndrome
Adventure and family vacations 100% do not need to stop. Ruby has taught us quite the opposite, in fact.
You just need to approach them a little bit differently.
After traveling to nearly 12 states (all road trips!) in the U.S. with our four children, here are my top three tips for traveling with a child with special needs:
1. Be prepared and pack more than you think you’ll need.
Preparation is key to traveling with a child with Down syndrome (and all children really).
Kids with Down syndrome all have different medical needs, and it is important to consider them when traveling.
First, ask your doctor and make sure your child is medically stable to travel. We spoke with Ruby’s cardiologist and actually discussed traveling and hiking to places with high elevations. We asked what signs of distress we should look for when we are at those elevations.
We also have a number we can call any time that will contact her pediatrician (or another doctor in the same practice) in case we have any medical emergencies.
Packing-wise, we always travel with common over-the-counter medications for children (Tylenol, Motrin, Benadryl, saline spray, cough medicine and melatonin).
There is nothing worse than being in a hotel at 2 a.m. and needing cough medicine or something for a fever.
We pack extra of Ruby’s prescribed medications so that we won’t have to worry about running out during the trip. Ruby requires oxygen at night, so we always take extra tanks, sensors and cannulas, too.
She requires a special thickener for all her liquids, and it has to be specially ordered, so we always take way more than we expect to use.
And finally, we take a first aid kit that has a thermometer, bulb syringe and stethoscope.
Having these supplies helps me enjoy the trip more because I know that I am prepared for almost anything Ruby may need.
2. Be flexible.
We usually have an itinerary when we travel to places we want to see or hikes we want to do on certain days.
I like having a plan. Sometimes this just doesn’t work out though.
I may want to do multiple hikes in a day, but sometimes Ruby wants to linger and stay at the waterfall, or sit and play with rocks or sand.
And other times, she has tons of energy and can hike a mile all by herself.
We have learned to listen to the children, their needs and what they want to do. Being flexible is key.
Occasionally, we have a perfect day when everything goes according to plan. But when it doesn’t, we don’t consider it a failure.
We know our family is unique and we are ok with that. The goal is to have an adventure and bond as a family.
Our adventure may look different than a typical family, but we have embraced being different.
3. Be ready for adventure!
Having a child with Down syndrome, we thought we would never be able to do anything adventurous as a family again and now, we have done more than we ever dreamed.
We were completely wrong about what it was like having a child with special needs. I’ll say that again:
We were completely wrong about what it was like having a child with special needs.
Yes, it’s hard. And we can’t do everything in the manner most people do things. We constantly have to make modifications.
However, this is our greatest adventure. We celebrate all of Ruby’s accomplishments and are constantly reminded that we are usually the ones holding her back.
She doesn’t know that she has Down syndrome. She doesn’t limit herself based on her diagnosis. So we shouldn’t either.
Her bravery has inspired us to be brave as well and constantly try new things.
So, I’ll leave you with this—my best piece of advice for traveling with kids with Down syndrome or other special needs: Let your child inspire you to try new things and be adventurous.
They have an incredible love for the world. Don’t be afraid to expose them to as much as possible and share what you love, too.
Our guest bloggers are compensated for their writing contributions and honest opinions.
All information is subject to change. This article is a curated guide and is neither sponsored nor considered an official endorsement. Please be sure to check information directly with any/all tours, guides or companies for the most up-to-date and direct details.
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