When Wil drops himself on the floor, there are times when someone who doesn’t know him well will step up and say, “Let me try.”
“Have at it,” I say. Then I sit back and observe what I already know is going to happen. I can’t always predict the exact words, but I do know the tune with which the words are played. It’s a sweet tone; syrupy sweet. The notes tilt up as they go, the sentence always ending in higher notes.
I know this tune, I’ve used it before. But it’s not getting him off the floor. Though the tune is sweet, the words are still based in someone else’s agenda, not his. And he knows that. If the Pied Piper came to town, Wil would be the sole remaining child. Unless, of course, the Pied Piper was well-versed in Luke Bryan. Then Wil would fall into step.
If it’s not his tune, he’s not budging. Though he may appreciate the sweetness of the notes, underneath it he knows it for what it is. Your tune, not his. No amount of syrup is going to slide him in your direction. Unless of course, it’s in a bottle of Sprite. Then you’ll be singing his kind of song.
At home, if I want more of a cool, calm vibe, I’ll ask Alexa to play “Van Morrison Station.” Wil will throw his head back and holler out, “Ugh, Mom! Alexa play Luke Bryan Station!” Then he’ll start breaking out his latest dance moves. “Watch this, Mom!”
It’s not that hard to get Wil off the floor, unless, of course, you aren’t playing his tune.
Wil had not slept in his own bed for months. He said he had a bad dream.
A bad dream could mean lots of things. It could mean something scary in his room. A toy, a book, a game. A bad dream could mean a scary occurrence that he couldn’t shake.
I dug deeper. Tell me more about your bad dream. He gave me a clue: Elmo cats. I knew right then the culprit. Mr. Tiger.
Mr. Tiger really isn’t all that scary. He’s a fluffy puppet with soft white mutton chops, friendly eyes and is more prone to smiling than biting. What he does do, though, is come on the screen and let out a roar.
We have a 100lb yellow lab and the fact that he rarely barks and is an intensely laid back dude is the reason he and Wil are best buddies. Other than Woody, Wil is terrified to be in another dog’s presence. The same goes for babies.
Though he’ll look at pictures of round-cheeked babies and floppy-eared dogs all day long and exclaim how adorable they are, in person there is nothing more terrifying.
Babies and dogs belt out loud noises unpredictably. Unexpected loud noises are Wil’s kryptonite. He’ll shrivel up on the ground with hands clamped over his ears. Sitting through his sister’s basketball game with the sporadic buzzes and whistle blows takes enormous convincing complete with the promise of a hot dog and Sprite. He’ll sit up at the very top, hands clamped over his noise cancelling headphones. As he’s gotten older, he’s become more aware that not everyone wears headphones. He prefers not to wear them when he can brave it out. But with babies, dogs and sporting events, even pride cannot win. Without headphones, he’s not going in.
Mr. Tiger has turned into an obsession for Wil. He wants to turn away but he just can’t. It’s like a Jack in the Box. He keeps cranking the handle (or hitting the rewind button) even though he knows one of the turns is going to make him jump.
I took the DVD out of his room. I talked to him about it. Still, he’s not going in.
I’d put Wil to bed, and at some point during the night he’d make his way to the basement, take out a sleeping bag, drag it up the stairs, and spread it out on the couch. It didn’t take long for him to create a deep dip in one of the cushions from his tired tush.
I talked to him again. I showed him the divet in the couch cushion. He was conscientious of his couch imprint. So he moved his sleeping bag to the living room floor.
I didn’t think the floor situation would last long. Our living room floor is hardwood with a wool carpet spread over it. Not the cushiest sleeping material. But he persisted.
I tried bribes. I made promises I’m not sure I could have kept. The call of the tiger was too strong. On the floor he slept.
Yesterday I googled ways to keep your toddler in bed. He’s far from a toddler, but I simply needed a way to get him back into his bed, and there were no resources on how to keep your teenaged son in his bed that fit our situation.
So last night I took Wil’s sleeping bag and spread it on the floor of his room. I told him I was going to sleep there to keep the bad dreams away. He looked at me like I was crazy but he agreed to sleep in his own bed. For the first time in months. Wil went to sleep, in his own bed, without issue. I was so relieved at the success of this idea, that though my sleeping quarters weren’t ideal, my relief relaxed me into sleep.
When I woke up, I silently exited Wil’s room. I went into the kitchen to make coffee and get ready for the day. Not a peep from Wil’s room. His door stayed blissfully closed. He went in and stayed in.
About two hours later, I opened Wil’s door to wake him for school. He was not in his bed. He had taken my place on the floor in the sleeping bag, snoring away.
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.”
“I was just wondering if Wil wanted to be part of the 7 dwarfs. We were thinking he could be Snuggly, Giggly, Silly, or Smiley! Considering Wil has all those traits!” I received this text from Ashley about Halloween costumes. Ashley and Wil, now in 8th grade, have gone to school together and been friends since preschool.
I read Ashley’s text aloud to Wil. He jumped up and responded, “Yes!” Wil chose Smiley, then I received another text from Ashley: “Or Seeger was thinking he could be the prince if he wanted to.” (Seeger is another good friend of Wil’s from school.)
“The prince!” Wil said without an ounce of hesitation. Which is quite apt, as Wil’s friends, who are planning a Snow White-style Halloween, are all girls.
Our Down Syndrome Support Team holds an annual Buddy Walk the last Sunday of September to raise awareness and acceptance for individuals with Down syndrome. With the pandemic, the decision was to hold a virtual event. Wil and his friends were not to miss out, so we held a small, local walk to which about 30 friends participated in. Wil, of course, walked with his close buddies, Ashley, Seeger, Lila and Sarah. At one point during the walk, Wil decided he needed a break and sat down on the sidewalk. Wil’s friends stopped and cheered him on. With their encouragement, Wil jumped up and they all started running. The friends joked it was the “Buddy Run.”
Near the end of the walk, we climbed to the top of school bus loop. Once at the top, Wil’s friends ran down the steep, grassy hill along the side of the bus loop. Wil remained at the top, looking trepid. Once again, the cheering section arose. His friends’ cheers nudged Wil over the edge and he tore down the hill. Once united, the friends jumped, laughed and cheered in a circle. It’s just as rewarding to be the cheerleader as it is to be the cheered.
Last year, I was talking to Ashley after school. She told me about an activity in gym the group of friends enjoyed participating in together. Then she said Wil grew tired and laid flat out on the gym floor. She shrugged her shoulders, smiled and said, “That’s just Wil being Wil.”
When Wil doesn’t have the words, his actions are his communication. Wil’s friends understand his language. Wil doesn’t judge others or create drama; it’s simply not in his arsenal. In that way, his friends are fully free to be themselves. If you are sad, he accepts your sadness without question. If you are happy, he accepts your happiness fully. If you feel goofy, he’s more than willing to join you in the silliness. If you need a hug, he has one at the ready. If that’s your clothing style, then it’s cool. To Wil, that’s just you being you.
As a parent of a child with special needs, I know first-hand the fight for acceptance. I also know first-hand that acceptance is quite fundamental: It’s just friends being friends.
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.
