Down syndrome

Win/Win

Leave a comment

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 guess we both had our wins.

A New Flight Path

Leave a comment

On the day of Wil’s birth, the nurse said he was “floppy” which is a soft marker for Down syndrome. He melted into my chest. The soft, defined curve of his eyes warmed my heart like I’d known this love forever. At the same time, the shape of his eyes sent a hard marker of knowing deep into my gut. I wouldn’t let the knowing climb up to be processed by my rationale. I held it down like a child with hands clamped over her ears, singing, “la-la-la-la.”

We all have dreams for our children. Even if our children do not step into those dreams. Even if we don’t really expect them to. It’s natural to form a moving picture view of the future ahead. Our dreams point the way. When I could no longer hold down the knowing of Wil’s diagnosis, confirmed by a doctor’s solemn nod, I found myself staring into a blank future. In what direction do I go? It was a stand-still in time.

I stared into Wil’s eyes and wondered at the seeming randomness of it all. Though I received many words of consolation and many words of encouragement, I felt directionless. I had no reference point. I was lost even though people all around me shouted directions.  

My first step was to call a trusted friend, Beckie Brewis. She ran the First Steps Parents as Teachers program which Katherine and Elizabeth were enrolled in. She was also the Early On service coordinator (a program for children with special needs ages 0-5). She put me in touch with therapists for Wil. He soon started speech, physical and occupational therapy. Beckie and Wil’s therapists not only helped him take his first steps into speaking, walking and picking up Cheerios, they also helped me take my first steps into this life too. 

When Wil first learned to walk, his physical therapist, Shelly, helped him up onto a balance beam. Shelly held one of Wil’s hands and I held the other.  On a balance beam the only reference point is forward, or you fall off. “Look how he does that,” Shelly said as Wil advanced along the beam. “He doesn’t know how to walk on his own yet, but he is now able to place one foot in front of the other.”

Today Wil and I run like airplanes – our arms out wide, we dip, we skip, we circle, we jump, we zig, we zag, all through the landscape. Our path may seem directionless to some, but we know where we are going because our grounding is solid. Imprinted in the earth are our footprints, one in front of the other, the path of trusted friends alongside steadying our gait. 

Learning to walk through the blank space was how I learned to fly. You can’t spread your wings standing still with your hands clamped over your ears. The knowing that I once held down is now the air that lights my wings….arms out wide, ears open, eyes curved to the sky, la-la-la-la onward we go.

Photo: Beckie and Wil

Proper Pacing

2 Comments

When Wil goes outside, he just goes. Once he’s out there, he figures out what he’s going to do. Sometimes, it’s picking up sticks. Piling them up, or bringing a few choice specimens home.

Other times it’s walking the lane all the way back to the woods. He may get into mischief by investigating a hunter’s deer feed pile. Or he may walk all the way back to the river. He’ll stand there for hours throwing sticks into the river. When he’s done with that, he’ll turn around and come home. No matter what, he finds his way to adventure.

On one of his river trips, I threw sticks with him. Thankfully, I forgot my phone at home. After tiring of the stick throwing, I took a look around. Then I looked up. There, poised on a tall dead tree was a woodpecker. He started his pecking. I watched him for a time, then just listened. Listened to the river, the sway of the trees. And lots of silence.

Wil enjoys the silence. The world is fast for him. Here, in the woods, nature is his pace. It’s funny how hard I try to get him to “keep up.” Come on, Wil, zip up your coat. Come on, Wil, get your shoes. Come on, Wil, it’s time to go.

How often do I go his pace? How often do I go the pace of nature? To listen to the woodpecker. To feel the flow of the river. To feel the silence?It’s amazing how scared of challenges we are, and yet, standing in silence may be our biggest challenge yet.

How silly of me to rush Wil, when instead, he’s the one drawing me forward.

A Darn Straight Day

Leave a comment

“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.

Just Friends Being Friends

Leave a comment

“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.

We’ve Got Ourselves A Runner!

Leave a comment

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. 

Our Own Little Buddy Walk

Leave a comment



The DSST Buddy Walk was virtual this year, but thanks to Wil’s amazing friends and this caring community, we had our own fun walk of about 30 people (and dogs!) in Manchester. Our local Steelegrafix LLC made our shirts this year and not only donated a portion of the proceeds to DSST, but also matched that amount! Manchester Mirror wrote an article about the event: http://themanchestermirror.com/2020/09/28/annual-buddy-walk-goes-virtual-for-2020/?fbclid=IwAR0_R7peFOfYsXal3REQWOTEXy-oZogfEFm6ps0SZ3y43ET1ofljqRZO11Q


Thanks to all who supported and/or walked!! If you’d still like to donate, Wils link is:
https://secure.frontstream.com/buddywalk2020/team/924124

Turn it Up, Down

Leave a comment

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…”