What is real about Down syndrome? That’s both a simple and a complex question. What is real is what doesn’t change. But so much does change! So to answer this question I need to dig deep under the layers. To dive deep, like a scuba diver, donning my gear, swimming deeper and deeper, head first, into the ocean. The bright, changing rippling water giving way to the darker, steadier waters below. Where the sand settles and all rises from. That’s where the real I’m talking about is. What doesn’t change and where all ripples and light lift up from.
An easy place to start is; what’s real is Wil is a boy. He likes typical boy things, and like most boys, there are some things that he likes that girls do too. He used to love to dress up in his sister’s princess dresses. All glitter and bows. He even had the spin perfected where his skirt would flair out and he’d laugh in delight.
Though he loved wearing his sisters dresses, I don’t think it was so much the glitter and glamour that made him shine each time he put one on and give it a spin. It was because those dresses were his sisters’. Wil wanted to be just like them. But as time went on the dresses were replaced with tractors and trucks. And hats. So many hats. The kids is obsessed with hats. We have 2 drawersful and every day he knows exactly which hat he will wear. But what didn’t change as Wil went from princess dresses to tractors and hats, is he wants to be just like his sisters. To be and do all the things that they do.
Wil can do many of the things his sisters do, but at a different pace. And in a way, this is the case for us all. We have role models we admire. Some of our role models are siblings, friends, parents, and individuals that have achieved what we aspire to. We model them, learn from them, and are motivated beyond our fears to reach new heights from the examples they have set. In that, Wil is more alike than different. But it still is different in certain ways. Wil has cognitive delays and low muscle tone. Though he can do a lot, he is not able to do all his sisters can do. This is a hard reality for him sometimes.
I remember specifically a time he wanted to swim like his sisters do. He put on one of their bathing suits thinking it would magically allow him to swim like his sisters. He ran out to the lake in excitement. But upon reaching the dock, he stopped abruptly, realizing the suit he wore had no special powers. It was simply his sisters swim suit and it was up to him to learn to swim.
He has since learned to swim, at his own level. He takes swim lessons and loves them. Though the kids around him have learned skills quicker, that takes away none of his zest. He splashes around, laughs out lout when the teacher assists him in floating on his back. At some point, I know he will be able to swim laps. Right now, he revels in being in the water and learning to swim. What will change over time is his ability to swim, but what is real is the excitement of his achievements. What may look seemingly small advances from the outside looking in, are great moments of joy for Wil (and frankly, for all of us that are witness to his joy!).
I believe this one fact is the reason many of us adore individuals with Down syndrome. We see the challenges, the time put in to reach one forward step. But that is exactly what makes each step a joyful celebration. Nothing is too small to celebrate for the heart and soul that goes into it. Where, when and how each step takes place can change, but the joy is unchanging.
Every morning, Wil asks me for a hug before he gets out of bed. One day he may grow out of it, but today is not that day so I soak it in. I used to sing to Wil every night until he fell asleep (poor kid, I’m not a good singer but he doesn’t care). Occasionally he will ask me to sing now, but he’s mostly grown out of that phase. He just says, “Bed now Mom.” So we go to his bed, I tuck him in, we talk a little bit, I give him a hug and he drifts off to sleep. As the singing has changed, the morning hugs may over time, too. I pray they do not, time will tell. Though his hugs are about as real as love gets, in keeping with the definition of ‘what is real does not change’, what will always be there is the pure, openness of love he gives whether it be through singing or hugging. Wil does not hold back his love in any expression. If he wants to hug you, he will, no matter who you are. If he wants to dance, he will, no matter where he is. We’ve even had a dance party in the lobby of Katherine’s Crossfit class because he liked the song playing in the gym!
Ahhh, and the flip side. The famous Down syndrome brand of stubbornness. From what I hear from my friends who have adult children with Ds, this will not change either! I used to peel Wil off the floor in the middle of the grocery store aisle when he decided it was time to stop shopping. Then, later it was figuring out ways to get Wil out from under the table in Kindergarten when he was done for the day. And now he is in a stage of learning to identify and verbally express his emotions. This has helped greatly with the “plop on the floor cause I’m done with this.” But it has morphed into “No! I don’t want to!” when it’s time for reading in school and he’s tired. So we have had some talks about this, and some days it works, and some days we need to do a little more talking. What’s real though, what won’t change, is when Wil is done, Wil is done. This has been a great teacher in patience for me. I can not make Wil do what he does not want to do. It takes calm talking and reasoning. Basically, it takes time and any force applied just delays that time. I’m a kind person by nature, but this experience has brought about a deeper level of kindness in me. I really have to dig deep to figure out where Wil is coming from and meet him there. That is easier said than done when there are places to be and time is short. With Wil’s sisters, they understand urgency when needed. Wil has his own timeline, and any forcing just slows things down further. He does have a great sense of humor about it though. One morning as we were just headed out the door for school, it was at that moment he decided he wanted a different hat to wear. I said to him, “Ok, run back in your room to get your hat. Quick like a bunny!” Wil responded, “Sloooow like a tortoise!” As he slowly clomped his feet to his room. That’s now become our joke in the morning.
So what is Real with Down syndrome? I guess you can dress things up and twirl them around. I suppose you could climb great mountains or take a single forward step. And you can do it all quick as a bunny or slow as a tortoise. And all of those experiences can feel darn amazing and add great meaning to life. Yet still, they are changing and evolving experiences. Those too, shall pass. What stays, what sticks, what lives down deep in us that doesn’t change. What lives forever if you dive deep enough to find it; is the joy derived from these experiences. How you celebrated of every, single step. How we expressed our intrinsic emotions while still finding a place in us to meet people where they are.
Wil lives a truly real life though this world tries really hard to change him and to “cure” him. I believe it should be the other way around. Wil knows what is real and he keeps it that way.
Stories of Wil, my son, who has Down syndrome 