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A Darn Straight Day

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“Mom, I worked hard today!” Wil shouted as he threw the car door open and took a seat right behind me. The school day had just ended. Elizabeth slid into the passenger seat and Katherine jumped in next to Wil.

“No way, Wil, not three days in a row.” I said.

“Yes!”

“Nope, not possible.”

“Yes!”

“Put it here, buddy. I’m proud of you.” I raised my hand over the front seat and Wil met it with a strong high-five. “Katherine, did you work hard today?”

“Hmm, sort of.” She gave Wil a sideways smile.

“What!” I rolled my eyes in mock disdain.

“Giiirl,” Wil pointed to her, “you work hard!”

“Elizabeth, did you work hard today?” I asked.

“I did, but I could have worked harder.”

“Darn straight!” Wil yelled out.

“Wil learned that from Ms. Kastel in a game they were playing.” Elizabeth said. “I think she changed one of the words.” We shared a smile.

Ms. Kastel was Wil’s 7th and now 8th grade social studies teacher. 7th grade was a particularly trying time for Wil, with a change in schools and an uptick in puberty. Ms. Kastel was cognizant of this and continually worked to find ways to connect with Wil. When she discovered Wil’s love for country music, she introduced him to one of her favorites, Johnny Cash. She bought the two matching t-shirts which Wil wears proudly. Wil also loves Pringles, so he and Ms. Kastel share a Pringles cheer for a job well done in class. Not surprisingly, social studies is now one of his favorite subjects.

On our drive home, Elizabeth filled me in on her day. Katherine added commentary on their shared classes. Wil listened to both of his sisters, then hollered out, “Mac ‘n’ cheese, Mom!”

“Mac ‘n’ cheese? You had it for lunch?”

“No, made mac ‘n’ cheese.” Wil mimicked stirring a pot. “With Victoria and Anna. My Connect friends.” (Connect friends are typically-developing juniors and seniors who are paired with students who have special needs.)

Oftentimes, Wil doesn’t offer much after school. He’s generally open at bedtime, when the house is quiet and there is time and space to share his thoughts. It can be challenging to create space between his sisters’ words on the drive home. We will often ask Wil questions to create the space for him. Though we typically get a “hmph” and shrug of the shoulders in reply.

When Wil stepped into the car that day, he threw the door wide open to his school experiences. I never know when or how a breakthrough in communication will arrive, but I know it when I hear it. On this day what busted down the gates was a build-up of three straight days of working hard, making mac ‘n’ cheese with Connect friends, a darn straight awesome social studies teacher, and hard-working (even if they tease they don’t), loving sisters who naturally show Wil how to create his own space. And that’s exactly what he did.

Blame Overboard!

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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.”

We’ve Got Ourselves A Runner!

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I intentionally started running in 2013, but when I think back, it really started around late 2009 or 2010. When Wil learned to dash.

The kids and I were part of an amazing parent-based learning program called First Steps (for babies up until your child went to kindergarten). The program was held in a school, within two adjacent rooms. There was a wide door opening between the two rooms.  As Katherine and Elizabeth are twins, and Wil only 20 months younger than they are, it seemed the 3 of them were always going in 3 different directions: Katherine would go immediately to riding the little tractor in one room (one day she earned herself a huge goose egg on her head, propelling herself along as fast as her legs would let her, until she encountered a countertop), Elizabeth in the other room with quieter tasks like the wooden puzzles, and Wil, as soon as he could walk, always found a moment to escape through the door to the open adventure of the long hallway.

With all of the parents in that room, Wil could have eluded even Columbo. He sought his moments in time when we were thus distracted, and he’d slip out the door and tear down the hallway in his little Stride Rite shoes.

Though every mother in that room was understanding, I always had an underlying “bad mom” feeling that my child was the only one constantly trying to escape. Then our Down syndrome support group started having indoor play dates with a University of Michigan student group called Motley Crew (a fun spin on the legendary rock band’s name as student group began volunteering at Mott Children’s Hospital). 

The college students of Motley Crew set up a single classroom at one of our local schools full of crafts and games. Despite this fact, I found that 95% of the kids in that room’s favorite activity was finding just the right moment to escape to the adventure of the open hallway. Instead of being the minority, Wil was just one of the “runners” as we moms called our kids.

Most of our kids would enjoy the crafts for a bit, but before long, even as fun and encouraging as this group of student volunteers was, the majority of the play date ended up being repeated games of Duck Duck Goose (at least that way our kids ran in circles and not out the door!).

As Wil got older, his running and escape methods improved. While at a basketball camp in the ginormous Chrysler Arena, all of the basketball players and their families assembled in the gym for a group picture. Wil was standing next to us one moment, and was gone the next. One of the moms standing next to Wil exclaimed that out loud, “He was just here!” 

There were no other events going on at the arena, so it was basically empty, but my largest concern was Wil getting outside and running near the road. I knew all of the moms there and we immediately split up and ran in search of Wil. Down one hallway, I came across an employee. “Did you happen to see a young boy with blond hair? He has Down syndrome?”

“No,” she responded. “But we have cameras up. I’ll see if I we can spot him.”


We ran down to her monitor room. Sure enough, Wil was going toward the outside doors. I made a mad sprint to get him.

As he’s gotten older, he’s not so much of a runner. However, when he does decide to go somewhere, he still slips out silently. Sometimes he’s still in the house, and he won’t answer me, so I’ve gone in desperate search for him only to find him in the basement bedroom quietly watching his iPad.

This is a common occurrence amongst other parents I’ve spoken with in our support group. One young man used to slip out to other houses in the neighborhood. It wouldn’t be uncommon to find him on a neighbor’s house watching television. One morning before school, his mom couldn’t find him. She called out his name with no answer, so then started calling her neighbors. He decided he wanted to read a book in the clothes dryer that morning, but didn’t respond to a single one of his mom’s calls to him! Not surprisingly, our Down syndrome support group often has discussions on alarms that can be fastened to a door so we will be alerted when our kids slip out the door. 

Now that Wil is a teenager, he’ll go off on what he calls “adventures.” The good news is he takes Woody, our yellow lab, most of the time. So if Woody is out the door, I know Wil is. Wil loves to collect sticks, so I’ll find him along our tree line (we live in a rural area and have 10 acres) finding the perfect specimens. He’ll come home hefting up either an impressive pile, or one solid walking stick. “Look what I found on my adventure, Mom!”

As Wil has low thyroid, as well as low muscle tone, this type of exercise, especially as it’s self-motivated, is good for him physically. The challenge is, of course, his safety, which again, he doesn’t fully comprehend. It’s a delicate balance as I certainly don’t want to quell his adventures as they are important for his health and his independence. I just wish he’d tell me when he decided he was going on one! 

But like everything with Wil, things come with time and lots and lots and lots and lots and lots of repetition and explanation. And I’ll likely always be a runner…at least as long as Wil is. 

Turn it Up, Down

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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…”

In Wil’s Words

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Wil and I laid on our sectional couch just before bedtime. Our heads together, we made a right angle given that we are almost the same height from top to bottom. My boy is growing up. 

“Mom, we read ‘The Shoemaker.’” I smiled. It takes quiet moments like these for Wil to initiate a conversation. 

“The Shoemaker? Was that in Ms. Kennedy’s class?” (Ms. Kennedy is Wil’s new resource room teacher.)

“Yes, up on the screen.” 

“Did you read it with the whole class?”

“Yes. There were elves.”

“Elves? Were they helping make the shoes?”

“Yes. They are cute.” Wil tilted his head closer to mine and smiled up at me.

“You are cute too.”

“I know.”

 “Tell me how the elves made the shoes.”

At quiet times like these, when Wil’s words are flowing and forthcoming, I wonder how many stories Wil keeps locked inside when the world is moving too fast for him. Wil is quick to laugh with his friends and interjects when he has something to say, but he rarely expands on his thoughts unless the time is laid out openly in front of him. When conversations are moving fast, as they typically do during the day, Wil is prone to stutter. Wil knows exactly what he wants to say but his words don’t come out fast enough and he gets stuck. “Use your soft voice, Wil,” is a cue we learned from Mrs. Charney, one of Wil’s speech therapists. Using his “soft voice” gives Wil the feeling of time and space laid out in front of him for his words to flow into.

When Wil is not forthcoming about his day (he is a teenager, after all), the topic of lunch usually gets the conversation rolling. Lunch revolves around his two favorite subjects: food and friends. Wil easily offers, in great detail, the day’s menu and the friends he sat with at the lunch table: “Seeger, Lila, Ashely, Sarah, Lilly…” This group of friends is gold, and happen to be 100% female. One of Wil’s homework assignments asked, “What do you want to do when you are an adult?” He thought about it for a moment and answered, “Football player.” 

“Hmmm, that’s an interesting answer.” I said. “You don’t play football. Do you want to learn how?”

“No.” 

“I’m pretty sure you have to know how to play football to be a football player. What else would you like to do?” 

“Get married.” 

“I’m not surprised to hear that. I hope whoever you marry loves listening to your stories as much as I do, Wil.”

“You are silly, Mom.”

Typical Truths

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“He will always be happy.” “God only gives special children to special people.” “Kids with Down syndrome are angels on earth.” Or the dreaded, “I’m sorry.”

Words meant to heal. Words meant to help. Words meant to fill the gap of not knowing what else to say.I have experienced, however, these words don’t fit the truth. Wil is not always happy. I’m not any more special than anyone else. Wil may be an angel, though, because he has brought me to my knees in prayer on many an occasion.

So what are the words that heal? What are the words that help? What words effectively fill the gap when it seems there are no words to say?I didn’t know the answers to those questions myself after I received Wil’s diagnosis. I was shocked and confused. My typical hopes and dreams were instantly dashed. A large void stood before me. What do I fill that space with? I simply didn’t know.

In tears, I called a childhood friend, Kelly. As I blubbered on about my child having Down syndrome, she said, “Well, how much does he weigh?” I stopped my crying in shock. Such a typical question of a newborn. I realized I had not yet been asked any typical questions. I didn’t even know I wanted to be asked such a question until that moment. When everything felt a-typical, feeling typical was a healing balm.

Words such as “Congratulations!” “What a beautiful baby!” Or, like my friend, “How much does he weigh?” And the helpful yet typical lie, “You look amazing and you just gave birth!”

In those early days, as a mother, I was flooded with information on how different our life would be. I didn’t want to feel special, I wanted to feel “normal.” I already was feeling sorry for myself, so I didn’t want anyone sorry for me. Hearing such typical words was the healing balm I craved yet I didn’t know it until I heard it.

Every baby is a gift. Every baby is an angel. And every mom deserves to feel special after giving birth.

Stepping Into the Real Story

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There is a book called “Count Us In” that is written by two young men with Down syndrome (and as the book’s description adds: with some word processing help from their mothers). This book was a symbolic “coming of age” for me.I started out reading beautiful books such as “Gifts 1: Mothers Reflect on How Children With Down Syndrome Enrich Their Lives” and “Gifts 2: How People With Down Syndrome Enrich the World.” I highly recommend these two books over and again. They were immensely helpful to me (I foolishly brought Gifts 2 on a plane ride and found myself in happy tears instantly.)

Oftentimes, the hopes and dreams we had for our child are immediately transformed to enormous question marks when we receive the initial diagnosis. This leaves an enormous void. What do we fill that void with? What new hopes and dreams can we dream? That is where real stories from real people come in. They help answer these questions and create new hopes and dreams. The void begins to fill. But there are still so many question marks. Gifts 1 & 2 filled so much of the void I was feeling. I began to dream new dreams and hope new hopes. I was so emboldened that I moved on to the book, “Count Us In.” What could be more inspiring than a book written by two young adult men with Down syndrome?

I don’t remember how far I made it through this book, but I had to put it down. I cried again, but this time big, sad tears. I wasn’t ready for this book. What specifically go to me was this: the young men’s speech delays were clearly evident in their writing. I wasn’t ready for that level of reality. The void I felt was still too raw, too fresh. I thought I had filled it, but after getting into “Count Us In” I knew I had more accepting to do. Or maybe more accurately speaking, more “knowing and experiencing” to do. In those early days what I needed was hope and faith in a very broad sense. I needed to read real stories from real people showing me that my son had a beautiful life ahead of him. They showed me to way to dream new hopes and new dreams. I wasn’t ready, though, to understand the intricate realities of the daily walk into those new hopes and dreams.

I returned “Count Us In” to the library and picked up those “Gifts” books over and again. As each book has a series of individual stories, as a busy mom, I reveled in the fact that I could open the book to any page and read as briefly or as languishly as I chose. Now, 13 years later, I am as inspired as I once hoped to be with “Count Us In.” (And I continue to absorb and read the stories of Gifts 1 & 2) So what has changed? I have now had the benefit of walking into those new hopes and dreams. This life is up close and personal instead of new territory to navigate.

When I watch Wil read 2nd grade level book, I know every single step it took to get to this place. I’m so proud of him, proud of his teachers and proud of our family. We have all seen every single step of his progress, and it’s an absolute joy to realize every triumph. Nothing is overlooked or taken for granted, and when you live that way, life is a good place to be.My twin girls are starting to drive. Wil sits in the back seat and teases them and they tease back. We have worked so hard on back and forth communication with Wil, and this is how it’s starting to emerge. I sit in the passenger seat listening and loving what is happening. My girls are driving and my son is teasing them. So darn typical! And still, within that typicalness, I could jump through the roof with my gratitude for it all.

Now when I read “Count Us In” I’m so proud of these young men, and I’m proud of their word processing mothers. I’m also thankful they took the time to share their lives with us. I’m also thankful that I’ve walking into a place where I can rejoice with every word they have written, in full and very real detail. Where at once I felt disconnected, I now feel more connected than ever.

We all have our own timeline for getting to where we want to go. And sometimes, it just takes some extra steps to get there. When we do arrive, we know, because we are the ones who have taken those steps. Even better, there are always new hopes and dreams to step(or crawl) into.

Playing Catch-Up

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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.

Wil is an expert at the game of catch-up.

Thank you for sharing Manchester Mirror: http://themanchestermirror.com/2020/08/31/stories-of-wil-playing-catch-up/