Our story: juvenile attitudes towards people with Down syndrome

A hike through Cumberland Gap National Historical Park provided a teachable moment.

Having an open weekend, I decided to take my kids to see where our home state of Kentucky started for colonial settlers.

The Cumberland Gap is a notch in the Appalachian Mountains near the juncture wherethe State of Tennessee meets the Commonwealths of Kentucky and Virginia. It is in the southeastern-most part of Kentucky and a three-hour car ride from Louisville (where we live).

In the 1700’s, settlers in the original colonies were looking to expand to the West, but the Appalachian Mountains proved an obstacle difficult to traverse on foot or horseback, and much more challenging if traveling with children, livestock, and loaded wagons. This is why the Gap was such a significant passageway.

The area had been well-known by the Native American tribes. The Gap sits along what became called the Warriors’ Path, for the well-trod north-south trail used by the Cherokee in North Carolina and the Shawnee in Southern Ohio to attack one another. But, to the white man, discovering the Gap opened the promise of new land.

The colonial settler associated most with the Gap is Daniel Boone. Though not the first white-man to discover the Gap, it was after his passage in 1769 that in the following years hundreds of thousands would be led by and follow after Boone into the new land of Kentucky.

It was in the footsteps of this forefather of Kentucky that I planned to lead my children.

Detail from David Wright’s Gateway to the West: Daniel Boone Leading the Settlers Through the Cumberland Gap – 1775

I had chosen as our destination the “Saddle of the Gap,” where the trail cuts through the mountain pass with the ridge line then rising to either side of you. There was were Boone had led the settlers through. There was where our state began. And, there is where my kids would stand.

But, as romanticized a notion as that sounds, the reality of hiking with an 11-year old daughter and her 10-year old little brother quickly came crashing in to ruin that idealized image of mine.

I tried to enjoy all the bubbling streams coursing down the mountain from the winter snow run off on an unseasonably warm February weekend. I sought to point out interesting rock formations or the lushness growing up around a fallen tree. I wanted my kids to enjoy the fresh air and history of starting out on the Warriors’ Path to join the east-west Wilderness Road that led to the Saddle.

But, what I had forgotten was that these were two little kids who had just sat in a car for hours, and then worked through the Junior Ranger activity book while their history-geek of a father read every written word at the Visitor’s Center. It was now 3 pm, and they were too young to have a cup of coffee or a shot of 5-hour energy to overcome the afternoon slump.

Plus, for all the talk of the Gap providing passage for settlers with their wagons, the Warriors’ Path to get to the Wilderness Road is not so easy-going. Far from it. Instead, it’s a trail that was used by warriors and so is fit for adults who can handle steep inclines all the way up until reaching the relative plateau the Road runs along.

Instead of me being at the front leading my children as Boone has been depicted leading settlers, I found myself in the middle of a strung out hiking party with James 20 yards in the lead and Juliet 20 yards behind me, complaining and asking “how much farther, Dad?”

This resulted in me hollering at James to hold up (the multitude of signs and brochures throughout the Visitor’s Center and on each picnic table warning of how the black bear population was on the rise can cause a father to fear the worse when his son is out of sight over a rising ridge) and then hollering back to Juliet with encouragement of “Just think, it’s steep going up, but it’ll be all downhill coming back!” (which did not seem to provide any comfort to Juliet).

James would stop. I’d catch up. Then we’d wait for Juliet to join us. From the start, James did not hold back from expressing his exasperation at how slow Juliet was moving. It did not matter that James has been with his sister through many of her physical therapy sessions as toddlers, to accompanying her to her private therapy she now receives. Or that he should know that such a steep climb, if it’s a challenge for him, then it’s that much more of a challenge for her.

None of that logical explanation or empathy, both of which James is usually quite adept at either employing on his own or understanding once explained, would staunch the never-ending grousing by him about his sister’s slow pace.

So, having reached the Saddle and then turned to head back down the hill, with James now 50 yards ahead of us, and still grumbling about how Juliet was slowing us down–well, I had had enough.

I shouted for James to get running back to us and on approach, he could see that his father might as well have had war paint on for the disciplining he was about to get.

While James could see my anger at his behavior, I didn’t explain the internal thoughts that were exacerbating my frustration with him.

Put aside that I had planned this trip into the wilderness for the purpose of not having to rush, not having to get someplace, but instead to enjoy each step along the trail as it took us deeper into the woods and higher up the mountain.

What was really aggravating me was that here was this otherwise almost-always incredibly sweet and caring brother who was disregarding his sister’s needs and acting and saying things in his complaints that, re-worded with synonyms, could express the idea of Juliet being a burden, slowing us down, keeping us from making progress.

All I said to James at the time was:

Look, the problem here isn’t however fast or slow your sister is moving, it’s how you’re behaving towards her. Now you can decide to be frustrated with her or you can instead decide to encourage her and enjoy your time here in the woods with us.

I think it’s that James would have preferred being confronted with a black bear than how his father looked is more the reason why his attitude improved than my words of advice. But, the trip down from the Saddle was much more enjoyable and relatively complaint free.

But, James’ complaints going up the mountain troubled me the rest of the evening.

It was only after having three more hours on the drive home the next day that I was able to have the needed perspective on James’ behavior.

For as great of a little brother as James is, he remains a 10-year old boy with an older sister. When I was that age, I can’t recall a trip into the woods–or anywhere else for that matter–that my Dad planned where my brothers and I didn’t bicker and fight with each other pretty much non-stop.

And, while what James said in telling Juliet to “hurry up” and “stop taking so long,” could be processed through my mind as akin to adult economists, bioethicists, obstetricians, geneticists, public health officials, cfDNA screening lab CEO’s and some of the trolls on this blog who say people with Down syndrome are “burdens” and “costs to society,” that wasn’t what James was saying.

He simply wanted us all hiking together but at his pace.

And, unlike those highly-educated adults, James is only 10 years old.

In the end, I decided to heed my own advice to James. I could decide to just be frustrated at his behavior. But instead, I was encouraged because James learned a lesson at 10 years old he’s not soon to forget about caring and being compassionate towards others.

Maybe I should invite some of those educated individuals who want to judge which lives are burdens and costs to be avoided on my next hike so they might learn the same lesson.

At the Saddle of the Gap