This post will have many photographs of a camping trip my kids and I took. They are images that many parents can’t imagine when they’re told their child has Down syndrome.
This year, the last day of school led into the Memorial Day weekend. Having a long weekend, I packed the kids up and headed out to a camping destination of my youth: Kentucky’s Red River Gorge.
My father loved the outdoors and would take his three boys camping each year. Once he and my mom became empty nesters, he took up backpacking. His favorite place to go was the Red River Gorge.
Daddy was ahead of the curve, as the Gorge has now become a destination for hikers and rock climbers, drawing a quarter of a million visitors each year. It’s no wonder, given that every quarter mile or so it seems there is a trail head off of the main road that will lead you to some breathtaking vista.
We made camp and set off for a couple of these trails. The first was to Sky Bridge. You drive to the top of the mountain and then the trail traces the ridge line with steep drops on either side, terminating in the Sky Bridge arch.
It is a natural arch, with no railings at all, and a bone breaking 30+ foot fall if one was to go over either side. James and Juliet minded my caution to stay in the middle as much as possible.
We next headed to Chimney Top Rock, where at the trail head, a sign warned hikers what was ahead of them:
Chimney Top Rock is the end point of a mountain ridge that split off from the main body of rock. It is a sheer column of rock towering over the Gorge. Fortunately, unlike Sky Bridge, there were railings.
Having hiked several miles, we called it a day and returned to camp for the night. James made the camp fire while Juliet set the table and helped with dinner, then we enjoyed some s’mores before settling in for the evening. We had a big day ahead of us.
Saturday we spent actually on the Red River, which had cut through the soft sandstone and limestone to create the Gorge. An outfitter drove us eight miles up river where we put our canoe in and spent the better part of the day rowing back down to the campsite.
James sat at the front, Juliet took the middle seat, and I sat at the back of the canoe. We made several stops to fish and to swim and made some unplanned stops when we would run aground or be stuck by a fallen log. Juliet had some difficulty getting her stroke down and paddling on the correct side. After trying several different instructions, at the halfway point, I said, “Juliet, just follow what James does.” That simple instruction was all that was needed. For the remaining four miles she paddled perfectly and on the correct side as I called out “left” or “right.”
The next day, we drove down to Natural Bridge State Park. Sky Bridge is essentially a miniaturized version of Natural Bridge’s massive expanse and height at the top of a mountain. Again, no railings, but a much wider walkway to stand on.
After three days of camping, hiking, and canoeing, it made for a quiet drive home as both James & Juliet napped allowing me time to think back on our time together. I was glad to have returned to the Gorge with my kids and, with James being named after my Dad, I could say that “James Leach is back in the Gorge!”
I was proud of how well both did during some physically demanding days. Juliet did a better job keeping pace with us on the hikes. Both did a commendable job of not horsing around while in dangerous spots (one of the reasons I suspect Daddy never took me and my brothers up on Sky Bridge). And, Saturday evening, we went to the Natural Bridge State Park’s bath house where Juliet and James each showered and dressed on their own. While this may seem mundane or expected to some parents, I know some parents can appreciate how much work had gone into Juliet being on her own in the ladies shower room and doing all her own self-care and dressing on her own.
I share all of this not to bore you with slides from a family vacation (those of my generation will get that reference). Instead, I share all of this in the hopes that should you be finding out your child has Down syndrome, then these are some images that maybe some day you can enjoy with your child. Certainly not the same, as no family or child is the same. But, I know of families still being told out-dated, incorrect information about what their child with Down syndrome “won’t be able to do,” including even walking.
Juliet benefited from three years of early intervention therapies, which included physical and occupational therapy. She received OT while attending school and since receiving the Michelle P Medicaid Waiver, now enjoys PT and OT weekly. All of this has helped her in developing the strength, stamina, and fine motor skills to do all of the activities we did while camping. Fortunately, every child in the U.S. is entitled by federal law to those first three years of early intervention and, increasingly, therapy support is being provided either through state Medicaid programs or through health insurance.
The world is not what it was for a child to be born into it having Down syndrome. These therapies and supports weren’t always provided or could be counted on. But, increasingly now they can be.
That makes these images and these experiences a possibility that new and expectant parents should have as options to envision when they look into their future wondering what their life can be like with their child with Down syndrome.