I was once asked if I felt to blame for Wil having Down syndrome. Rude, yes. But when something happens unexpectedly, we all look for reasons. This person just happened to ask their reason out loud. Asking why something happened is survival. However, our asking usually points to something outside of ourselves. We can dust our hands of it and say, welp, it’s just the way it is; it was the way I was made; it was because of; it’s their problem now.
There is no known reason for why that 3rd copy attaches itself to the 21st chromosome. I might be to blame, I might not. Thankfully, I don’t have the answer to that question. And I love that so much. Because it is initiative in it’s purest form. There are no fingers to point except to myself. Not in blame, but to wrap around myself in this great big hug that says, “I’m not sure what’s ahead, but let’s jump in with both feet and see where this journey leads us.”
Wil and I left the store and walked through the parking lot to our car. Wil stopped just short of our car, and kicked his legs out in front of him in quick succession. He began humming a tune, then planted his legs and wiggled his hips. His hum broke way to song and he pumped his arms in the air.
“Mom, dance with me!” He yelled.
“How could I not?” I replied and jumped in with him.
Wil is rarely without a song. If you utter a word, he’s got a song for it. If I say, “I think it’s going to rain,” he’ll reply with, “Rain is a good thang!” (A Luke Bryan favorite.)
Wil walks around our house singing songs. It’s not uncommon for Wil to break out in song at the dinner table. He may have halts in his speech, but his singing words flow. Wil plays and lives by the beat of his own music every day. You don’t have to know music to know Wil –he brings you along for the ride.
One day while walking the aisles at Target, Wil spied sample headphones sitting on a counter. He put them on and started jumping, twisting and waving his arms. The wire cord attaching the headphones to the counter were his only hinderance. He danced to a beat streamed into the headphones only he could hear, and yet it was quite amazing to watch the effect of his song reach every person passing by. There was not a person who didn’t visibly relax their shoulders, smile and walk taller after passing Wil’s space. You don’t have to hear his music to feel the beat.
Ironically, when I think back to the day I received Wil’s diagnosis, my memoires are devoid of song. There was no dancing, not even to a silent beat. Even Wil barely let out a whimper.
I learned lots of words and terms in those early days, but none had a note of song. In fact, Wil’s diagnosis had a name that was quite melancholy. The name “Down” was attached to Wil’s syndrome, after Dr. Langdon Down. Though Dr. Langdon Down seemed to be a good man, whose intentions were to make a better life for people with Down syndrome, a name like “Down” is hardly joy invoking. But leave it to Wil to change that.
Wil may have been a quiet baby, but he could soon sing “You Are My Sunshine,” word-for-word (a song my dad always sang to him) before he was able to speak. He rocked to the beat months before he could walk.
As Wil “gets down” to his music every day, I looked up that very term in the dictionary: “to enjoy oneself by being uninhibited, especially with friends in a social setting.”
I’d say that’s a down-right accurate description.
To which Wil would likely sing in reply: “I turn it up, down, up, down, up, down…”
Person-first language. That was one of the first terms I learned. Wil is not a Down syndrome boy. Wil is a boy with Down syndrome.
I also learned where the word Down came from: Dr. John Langdon Down. Dr. Down wasn’t the first person to discover Down syndrome, but he was the first person to fully describe the characteristics of Down syndrome. “Down” is thus capitalized for Dr. Down’s name, while syndrome remains in lower case. I heard from many different sources that Dr. Down’s name was unfortunate and that our kids really have “Up” syndrome (be sure to only capitalize the “Up”).
Terms also got Down-right (or should that really be Up-right?) clinical. Hypotonia, hypothyroidism and epicanthal fold to name a few of the most common first terms I heard repeatedly. Except for one genetics class in college, I’d never been presented with so many photos of chromosomes in my life; and not just any chromosome. The very specific 21st chromosome pictured with 3 copies rather than the typical pair. Thus the name, Trisomy 21, the most common form of Down syndrome.
Looking back on this early learning curve full of facts and definitions, I have a visual of a news broadcaster (if you can picture a hybrid of Tom Brokaw and Ron Burgandy) sitting behind a desk. His face is very serious as he taps his important stack of papers on the desk in front of him. He looks straight into the camera, ready to deliver his very important speech. Over his left shoulder is a screen, and on it appears the cherubic face of an infant.
“Good evening, folks.” He says in a professional deep baritone voice. “What you are seeing now is a baby with Down syndrome.” He pauses for effect. “Not a Down syndrome baby. Be sure to use your person-first language only, folks.” “Note the baby’s epicanthal fold, giving the appearance of almond shaped eyes…”
The photo of the cherubic baby is replaced with 3 squiggly lines. “What you are looking at now are chromosomes. Specifically 3 copies of the 21st chromosome…”
“And remember folks,” he says in closing as the screen changes to a stock photo of laughing toddler (who has Down syndrome) with his cheerful mother,” there is nothing Down about it!” Cut to commercial.
It’s easy to poke fun now because I’ve lived this life. In the beginning, the diagnosis of Down syndrome scared the heck out of me. Mostly because I knew so little about it. An education in terms was important to me. But there is a vast difference between living a life and learning about that same life. Learning about a life relies on definitions to develop understanding. But when you live that life, everything you need to know is learned by first-hand experience, and most importantly, feeling the emotions that accompany those experiences.
Today, those stock photos of the 3 copies of the 21st chromosomes are squiggly, little lines that I just want to hug. They are part of my son. And speaking of hugs, have you ever had a Wil hug? Thanks to hypotonia, he just melts right into you. Don’t get me started on those little folds above his eyes. Talk about melting.
As for Wil’s diagnosis? The coining of Dr. Down’s name is unfortunate, who wants to be defined as Down all the time? But who is Up all the time, either? Wil is Wil. We are totally down with Wil’s syndrome (be sure to capitalize the W).
I would love to see my hybrid newscaster take on the task of presenting our potty-training adventures. The word poop was a common word in my vocabulary as both a noun and a verb. One well-meaning family member convinced my parents that the only reason Wil wasn’t potty-trained was because I was too busy. As my parents would have Wil to themselves for a weekend, this family member mentioned it would be the perfect opportunity for my parents to potty-train Wil. I said have at it! That very first night, my mom called me saying she gave up. We both had a really, good laugh over that. My parents are totally down with Wil syndrome, too.
Having low muscle tone (aka hypotonia) didn’t help the potty-training process move smoothly, so to speak. Discussions within our Down syndrome support group revolved around this subject on most occasions. We were each other’s best resource, as we had very little other resources to pull from. Typical potty-training books were soon flushed down the toilet in frustration as our kids pulled up their pull-ups and got on with another day, oblivious to our concerns we’d be buying pull-ups through their teen years.
Wil is now a teenager, and thankfully the pull-ups days are long behind us. Poop, however, has not vanished as a common word in this household. He’s a teenage boy after all. Potty talk is considered hilarious in both noun and verb form. As for me, I continue to flush typical how-to books down the toilet and find my friends within our Down syndrome support group to be my most helpful and greatest resource (with a few laughs along the way to get us through our challenges).
When you know the person first, you wouldn’t live, learn, speak or see things any other way.
Wil is an expert at the game of catch-up. It’s a game he plays every day.
Wil has low muscle tone, which adds to the game. In fact, I’ve been told having low muscle tone feels like wearing a backpack all day long. It’s no surprise, then, that Wil’s favorite place to play is in the buoyant water.
Last week while on vacation, Wil was playing in the outdoor pool. Wil recently learned how to do a handstand in the water. So he practiced his handstand over and over.
A brother and sister, about Wil’s age, were the only others in the pool. They were tossing a football back and forth. Observing Wil do handstands, the brother set aside the football and said, “Zoe, let’s do handstands.” Zoe, smaller than Zander, made an attempt and soon toppled over. “Watch this,” he said, confident to top his sister. His handstand was nearly the same as Wil’s – his legs went up in the air, and as soon as he straightened them, he toppled over. Zoe and her brother continued their practice of handstands.
Tired of handstands, Wil pulled himself out of the pool. With a quick walk/run (the kind that kids do when they know they have to walk but really want to run) Wil hustled to the deep end of the pool. Then Wil stepped back and, with a running start, leapt into the pool.
The brother and sister stopped their handstands and watched. Wil repeated the process (with a side eye on the brother and sister).
The brother swam over to Wil. “Do you want to be our friend?” the brother asked.
“Yes.” Wil said.
“Hey Buddy, introduce yourself.” I called out from the pool deck.
“Hi, I’m Wil.”
“Tell them your names,” their father called out from the pool deck. The brother and sister then introduced themselves as Zander and Zoe.
“What do you want to do?” Zander asked. “Do you want to throw the football?”
Wil said yes, but then he swam off. Zander and Zoe, confused, swam after Wil. Wil pulled himself out at the shallow end, then did his walk/run to the deep end. He stopped and waited for Zander and Zoe to catch up. Then he stepped back, took his running start and leapt into the pool.
Zander ran and leapt in after Wil. Zoe ran to the edge of the pool, stopped, then hopped in. They all bobbed and swam to the shallow end, looking at each other as they came up for air, smiling. A game was afoot. Round and round they went.
Each round, Zoe’s fears subsided and her leaps began to catch-up to the length of Wil’s. Zander, who started out as a ball of fire, began to lag behind, catching his breath.
“Getting worn out, Zander?” Zander’s dad asked and smiled. Not to be outdone, Zander gathered back his energy and ran to keep up with his new friend, Wil.
