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This is the face of a leader.
While there are some in the world who might think of a person with Down syndrome as marginal, let me assure you, that’s a misnomer. Even so, I think it’s safe to say in general, people would not consider a person with Down to be a leader.
What exactly is a leader, anyway? I believe a leader is a thinker. A problem solver. A decision maker. Someone who doesn't wait around for others to make things happen. Things happen because the leader makes them happen. Not by railroading others, or demanding, or coercing. But, by facing the giants.
By giants, I mean facing those things that seem insurmountable. What may seem impossible to some seems a matter of course to a leader. When it comes down to it, a leader sees the need, signs up for the challenge, and then gathers the team to get it done.
A leader sees the abilities in others, calls them to the task, and then gets out of the way and allows them to do it.
A leader inspires others. Not with their elevated sense of self, but by their sense of seeing what's possible and elevating others. A leader is fearless.
Sometimes I forget what a leader Charley is. How he kicks his Down syndrome out of the way when facing his giants. How he summons that extra chromosome like a sword, slaying the obstacles in his path. And I saw it in action first-hand this morning.
Here's what happened...
We'd been staying at a hotel in Louisville for three days while visiting our families. It came time to leave and I told Charley I would go sign out while he finished packing. If you know anything about that twenty-first chromosome called Down syndrome, then you know what creatures of habit they are. Routine-oriented all the way.
As far as Charley is concerned, part of the routine of staying in a hotel is using the luggage cart to unload and re-load the car.
When we arrived, the luggage cart was available. But when we went to check out, all the carts were in use.
“Gweat,” he said, slapping his palms to his thighs. “No carts.” (Can’t say I blamed him. I sure wasn’t carrying all our junk to the car.)
"Sorry honey," I said. "We'll just have to wait till someone brings one back. Then we can grab it." With that, I sat down on one of the chairs and waited. And waited, while he shifted from foot to foot. Was I to stop at nothing? First, no luggage cart, then trying to bore him to death with waiting?
He looked at me, like, see ya, and headed back to the room. I figured he was going to wait there. I figured wrong.
About three minutes later here came Charley, into the lobby carrying my hanging clothes, three bags, his swimming fins, goggles, and my makeup case. Following close behind him was a tall, husky man carrying my suitcase and a Charley’s backpack. Behind him was another man. He was carrying our cube of Coke Zeroes, my journal, some books, and a box of snacks we just had to have for our trip.
"Dis way," Charley said, pointing. The men followed. Forgive me, but my mouth dropped open.
Here was this little guy (Charley), maybe all of 5 feet, directing these two husky six-feet or so men, and they headed outside. "Dat's my Mom," he said to the men, as they went by. "Deese my fwents, Mom."
The men nodded at me and said, "Hiya Mom, nice to meet you."
I don't how else to say this, but I could have dropped and rolled right there. You've got to be kidding me.
There was only one thing left to do; follow them to the car and grovel, followed by some serious apologizing.
"Did he con you into carrying our luggage?" I asked.
"Not exactly," one man said. "He said he needed help, so we helped." (I could just envision Charley in the hallway of the hotel, flagging down people on their way to the lobby; “Need help here,” and pointing to the room where the mountain of luggage waited.)
"Kanks guys," Charley said, and slapped them a high five as the three of them headed back into the hotel.
I pulled the car around to the entrance of the hotel, thinking it would be easier for Charley and me to get the rest of our stuff.
Um, did I say Charley and me?
Scratch that. Because the next thing I know, Charley's emerging from the hotel with a woman following close behind, and she happened to be carrying what was left of the case of bottled waters we had brought with us. Into the back of the van it went.
He turned and grinned at me. “See?”
Again, my chin nearly hit the ground.
"Charley, you just can't go asking people to do things like this," I scolded.
"Welax Mom, I got dis."
He sure did.
Before I knew it, the car was completely loaded, and there wasn't a luggage cart in sight.
Now. You may think this was rude. You may think it invasive. You might even consider it demanding and inappropriate. And I suppose by most standards, it was. But I couldn't help smiling at what a problem solver my supposedly "challenged" son is. There I was, resigned to sit and wait until a luggage cart showed up; while he was busy taking care of the challenge at hand. Facing the giants.
A few minutes later we met my sister for breakfast. When we went to leave, Charley sat down in the waiting area while we paid the bill. He wasn't sitting there very long when a man approached the door pushing a stroller with a small child. I saw the man, and the waiting area filled with people. I also saw the only person who jumped up and raced to hold the door open. It was Charley.
That was a moment of clarity for me. It wasn't that Charley was trying to con those travelers at the hotel into doing work for him. He simply needed help. He had a task at hand that seemed too much for one person, and he set about gathering his team. To him, that seemed logical. And, bless him, he didn't act like me. Not once did he issue an apology for inconveniencing them. To him, people should help people. And that's just the way it is.
When I think of all the leadership positions I've had over the years, it makes sense. Every good leader understands team work. They also understand the concept of paying it forward. (Apparently, so does Charley). You help me, and I'll either help you, or I'll help someone else when the situation presents itself.
It's a simple concept, really, this you help me and I'll help you mentality. And if it’s so simple, then why are we so surprised when a supposedly simple person figures it out?
I'm embarrassed at how often I underestimate him. How little I still know about that extra chromosome called Down syndrome. But I'm equally impressed at the things he teaches me.
Does this mean I'll recruit travelers to help me with my luggage when he isn't around? Probably not. Does it mean I won't fuss at him when he sets out recruiting his team, especially when it’s a team he’s never even met? Probably not.
What it does mean is that I can see him in a new light; that of a person who faces his giants, whether they are people or challenges.
It also means that when he's faced with those challenges, he's a thinker. He finds a way.
As a mother of a special needs adult, my whole life has been about facing the giants…
- The massive preconceived notions of that extra chromosome and all the challenges that come with it.
- The extensive health issues that often accompany Down syndrome.
- The wide schisms that so often cause those roadblocks in his social development.
Yes, life has its hurdles. But sometimes it takes an extra chromosome to show us all how to take a leap.
When I think about it, the world may crumble around us, but the one left standing will be the one who doesn't cower just because the situation seems bigger than he is.
You’ll know him when you see him. Just follow the leader.
Sherry Palmer is the Author of Life With Charley: A Memoir of Down Syndrome Adoption. Available at: Life With Charley
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