Down with Adventure: How a Daughter with Down Syndrome Inspired a Family to Explore

Words and images by Melody Forsyth | Cover image by @zionadventurephotog

I sat on the shuttle bus looking out the window.  “I better soak this in and enjoy the red rock, because I will probably never be able to enjoy this again”, I thought to myself.  I was pregnant with my fourth child, and not only were we surprised to find out I was pregnant, but we were more surprised to learn we were also expecting a child with Down syndrome. We knew having a child with special needs would brings changes to our family. However, we thought that it meant that we would be stuck at home all the time. We assumed that her medical needs would prevent us from being adventurous. We thought that our lives would revolve around our child’s disability.

As I got off the shuttle bus, I saw a family with a child in a wheelchair. They were out exploring in the national park. I suddenly realized as I watched them, that if they were out having fun in the park and enjoying the outdoors while having a child with a disability, we could too. It was all about our mindset and determination. After experiencing Zion National Park and having fun on a hike with my children, I was determined to continue this adventure. We made a goal to visit all the National Parks with all our children, including our daughter Ruby, who was born with Down syndrome. When Ruby was 9 months old, we took her and the family to Yellowstone National Park. I put her in the cheapest hiking backpack we could find, threw her on my back, and had the most amazing feeling come over me. I was hooked.

 

Ruby rappeling in Kanab, Utah

When we started out with our goal of hiking in all the National Parks, it was a simple goal of getting there and maybe doing a hike or two. With each new national park, I realized that Ruby was started 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 travel longer distances 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. We have since changed our mindset. Now, we just want to get out and try it all. Why not try rappelling? Why not try skiing? All the things I thought we could never do as a family because I thought we couldn’t. Ruby taught me that we could try. Her diagnosis doesn’t define her and it doesn’t have to define what we do as a family.  Having a child with Down syndrome actually opened the world up to us and gave us the courage to try new things. We hope all parents make time in the outdoors a priority. It has changed our family and brought us closer together.

 

 

Backpacking as a family

Still wondering how to make this happen?  Here are 3 things we have done that have helped us get outdoors with our children.

  1. Be prepared as much as possible. This is a very important factor to our success to traveling with children, especially children with special needs. We need to anticipate her needs and be prepared for many situations. Many times, this means packing much more than we use. It’s not fun packing extra. It takes up more space and it weighs more. Many of Ruby’s medical supplies are not easily purchased in any retail store so running out would cause problems. Being prepared reduces our stress. It creates peace of mind so that we can enjoy the time in the outdoors instead of worrying about “what ifs”. Create checklists for the things that are the most important. We use those lists over and over so that we avoid forgetting the most critical supplies.
  2. Be flexible. We always have a plan B when we go places. There is no shame in turning around. Sometimes Ruby is not cooperating. Sometimes the other children aren’t cooperating. Sometimes the best thing is to quit. It’s important to really know yourself and your children and to know your limits. Sometimes we push through and we make the children push through. Sometimes we change plans and do something else. The more we hike as a family, the more I am able to understand what my children can do. Remember that the destination isn’t the goal. Time on the trail and time together creating memories is the goal.
  3. Be patient. Be patient with your kids, be patient with yourself, be patient with others. It’s hard and it isn’t easy for me to always be patient. I used to compare Ruby to other children her age. It was hard to watch her behind on many skills. When I watch her go on her own though, I can see how slowly and surely she is becoming more confident and pushing herself to do harder things and test her own abilities. I need to be patient with others who sometimes say negative things or doubt my abilities or stare at my daughter too much. I need to be patient with myself and my family and accept that our adventures look different that other people’s adventures. That’s ok. Different is ok. Ruby teaches me that everyday.

Hiking in Sawtooth National Forest

Most importantly, just get out there in whatever capacity you can. We don’t have a magic formula to explain why we are able to get out and adventure so much. We just go for it and do it and learn from all our mistakes along the way. Trust me, we have had plenty, but the more we do it, the more confident we become. Just get out there and have an adventure. You won’t regret it!!!

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