Down syndrome book

Of Mice and Squirrels – Defying Categories

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“Look at me, Mom.” Wil held a sandwich close to his mouth and nibbled bit-by-bit.

“Look at you. Such a cute, little mouse.”

“Ugh, Mom, no. I’m a cute, little squirrel,” he said emphatically, then rolled his eyes upward. Wil is an expert at merging the aspects of childhood with the antics of teenage-hood.

Wil’s voice has grown deeper, there is the faintest hint of peach-fuzz on his upper lip, and he has a huge crush on Luke Bryan’s wife, Caroline (ask Wil what he wants to be when he grows up and he’ll answer, “married”). Wil has a mean left-handed golf swing, he knows every word to no less than 100 songs (99% of which are country), and he gives a hug that melts the grumpiest heart. 

Wil recently ditched watching his favorite show, Doc McStuffins. “It’s a baby show, Mom.” Yet if Sesame Street is playing on PBS, he stops in his tracks for Elmo. It’s the music that moves him, no matter the age it’s intended for. Play anything from Hairspray to Frozen, High School Musical to Sing, and you’ve got his attention.

I’ve been asked on many occasions what “mental age” Wil is. I think it’s a way for people to understand his abilities. But it’s not a question I can answer. Wil’s interests and skills are much too broad to categorize him under a singular mental age. To understand Wil is to understand his individual interests and skills. And even those could change tomorrow. Except country music — that lives in his soul.

In our Down Syndrome Support Team, we parents share insights on our children’s learning styles in reading, math, and social studies. We exchange stories on their sports, hobbies, and friends. We laugh and cry over the challenges of puberty. Topics most parents discuss. However, many of our stories are elongated and can be quite in-depth. What works today may very well not work tomorrow. There may be a stand-still in progress for what seems like an eternity, then one ordinary day the floodgates of progress fly open. In our world, no day is ever ordinary. Every day holds a surprise gift waiting to be hand-delivered. We know the gift is coming, the surprise is in not knowing exactly how or when. 

Each of our children cross the bridge to a milestone on their own timeline and in their own way. Some bridges have a few extra planks built-in, others circle back to wind forward, and a few crisscross with one another. It’s nearly impossible to speak of our children in linear terms, nor do we want to. I find it highly ironic how often our children are categorized when they defy the boundaries of most any category they are placed in. 

I would know. Just this morning I had mistaken a cute, little squirrel for a mouse. And so life grows…

What They Can’t Tell You

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Wil ran up to me, then reached into his pajama pants pocket. He pulled out an adhesive mustache and stuck it under his nose. “Look at me, Mom!” He leaned his face so close to mine that I saw double.

“You are so close I can’t see you!” He stepped back, his mustache upside-down, the edges tickling his cheeks. He smiled at me with that upside-down mustache and I thought, this is what they can’t tell you.

The silliness started at about 7:30 that morning. Wil busted out of his bedroom, in his stripe-legged pajamas, the music from his CD player trailing behind him. He placed his hands on the living room floor and kicked his bare feet up in the air. “Look at me, Mom!”

“Look at you, Fancy Pants! Nice moves.” Though I’m a coffee drinker, there is no amount of caffeine that can lift me higher in the morning than Wil’s dance moves. It’s like being handed a fistful of balloons and feeling your feet leave the ground.

Sadly, I had to bring us back to earth. It was time to log in to school. “Wil, you look very handsome in your mustache. How about you show off your mustache in class? You are going to be late if you don’t log in now.”

“Ugh, Mom, no.” He flopped himself on the floor then laid face-down.

I dropped to the floor, laid on my belly and put my face close to his head. In a deep, sing-songy voice I said, “I see you! Time to log in to school, Wil.”

He lifted his head, leaned his forehead into mine and mimicked my deep sing-songy voice, “Ok, Mr. Mom.” Then he started laughing. When Wil laughs, he laughs with his whole body. I thought, this is what they can’t tell you.

They can’t break through your tears, into your hurt heart, after you learn your child gained one extra chromosome, and explain how a smile under an upside-down mustache, a leg-kicking pajama dance, and a body-racking belly laugh on the floor will make you feel like you hit the jackpot.

Because you did. You just have to live it to know it.

An Evil Queen’s Observation on Acceptance

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I am often placed in the position of being teacher. Not by trade. Not by degree. But by raising a child with special needs.

My favorite way of learning is through storytelling. Allow me to introduce you to the cast:

Grumpy: Lila

Happy: Ashley

Sneezy: Seeger

Sleepy: Sarah

Doc: Olivia

Dopey: Lillian

Bashful: Rebecca

The Prince: Wil

The Evil Queen: Yours truly

I, the Evil Queen, trailed 10 feet behind the Prince, Grumpy, Happy, Sleepy and Doc (we’d join Dopey and Bashful later). The Prince’s red cape billowed behind him as he ran with his knit-capped friends of varying personalities. Grumpy created the route; it was one she had carefully constructed over the years that yielded top candy output. The friends fanned out in the side streets, then narrowed 2×2 down the sidewalks– Sleepy ran ahead to talk with Happy; Happy later dropped back to put her arm around The Prince; Grumpy sped up to catch Doc, Sleepy shared a story making Doc laugh. They were a letter swapping word game; switching it up, creatively making sense in any order.

The Evil Queen lingered behind, careful not to put a kink in the easy moving chain. The Evil Queen’s role this Halloween night was to walk the Prince back to Grumpy’s house when he showed signs of tiring. Other than that, she was merely the observer.

As the friends made the climb up to Chi-Bro Park, the Evil Queen saw it was time for the Prince to take a rest. The Prince received a round of hugs from his friends, and he and the Evil Queen made their way to Grumpy’s. (This particular Prince is a fan of Luke Bryan, so he and the Evil Queen jammed out until the rest of the crew returned.)

When Sneezy, Grumpy, Happy, Sleepy and Doc returned to meet up with the Prince and Evil Queen, they all headed to Sneezy’s house for a haunted woods walk and bonfire. There they met up with Dopey (Bashful joining in via zoom). The friends banded together and each carried a flashlight, that doubled as a whistle, to survive the scares from the Evil Queen, Sneezy’s parents and any other spooky spirits that hid in the haunted woods.

Having successfully survived the haunted woods, the friends sat around the bonfire. They flashed their flashlights and blew on their whistles in between conversation. As the pitch of the whistles increased, the Prince became overwhelmed as he is sensitive to loud noises. Without warning, the Prince jumped up out of his lawn chair and disappeared into the dark.

In perfect unison, Sneezy, Grumpy, Happy, Sneezy, Sleepy Doc and Dopey lifted out of their chairs and banded together. Flashlights in hand, they ran together into the dark: “We are so sorry, Wil! We just forgot.”

“That’s ok,” was the reply I heard from the dark. The Prince and his friends began a new game in the dark with their flashlights, but not the whistles.

One afternoon at school, Wil became overwhelmed during the lunch hour. He got out of his chair and bolted. He was chased by a few students and teachers. When he reached the hallway, he plopped himself down on the floor. The well-meaning students and teachers that followed him tried their best to coax him back up. He wouldn’t budge. Seeger (aka Sneezy) stepped up and asked that Wil be given some space. She explained that he needed to feel back in control of his environment. How did she know this? Because she read “Stories of Wil: Puberty Part 1.” She wanted to read this book to better understand her friend. How cool is that for a 13-year-old? Sure enough, Seeger’s suggestions got Wil off the floor and back in the lunch room.

There are buddy programs in schools that pair typically-developing students with students who have special needs. While many of these programs are viewed as teaching typical kids how to have a better understanding of those with special needs, they are really about creating an understanding that we all have differing needs. And that can change on a daily basis, especially when you are in middle school! We all are a multi-letter swapping word game that requires creativity in putting the pieces together. Wil and his friends do not play by their differences, they play by their understanding.

Though I am often placed in the position of being a teacher, in this story I am the observer. Grumpy put me there. She asked that I be the Evil Queen. Grumpy knew that if the Evil Queen was available in the background, the Prince could join his friends for a night of trick-or-treating. Grumpy not only mapped the trick-or-treating route, she also creatively put the pieces together.

I hope you have learned as much from the story of Grumpy, Happy, Sneezy, Sleepy, Doc, Dopey, Bashful and The Prince as I have. May you find yourself in one of them (or maybe a few of them depending on the day). Play by understanding. Shuffle the pieces. Get creative. You never know who may be learning from your story.

Greater Than

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“I made my call. I did my charity service for the day.”

Charity, in its truest form, is an act of unselfish love toward another that is less fortunate. In the quote above, however, the act of charity is about the doer rather than the receiver; time out of our day to do “good” for someone we have put in the “less fortunate” category (even if they do not belong there).

In Wil’s eyes, I could be less fortunate than him. Let’s face it, I’ve got one less chromosome than he does and it’s unlikely I’ll gain another. I do judge others; Wil never does. I do hold grudges; Wil never does. I get too busy for hugs; Wil is never does. In fact, he refuses to get out of bed without one. Thank goodness. Wil never forgets to stop and smell the roses. He never forgets to stop and smell the dandelions, either. To Wil, roses and dandelions are equally beautiful flowers.

Aside from my faults, Wil loves me as I am. He never places me in the less fortunate category, though I have much to learn. The closest he’ll get to it is saying, “Oh, you are silly mom,” or “Whoops.” He gives me permission to laugh and start again. His love for me is unselfish, despite my less fortunate ways.

It’s all too easy to look at the world through our own lens. To do “feel good” things for our own good, when we could open ourselves to “lesser things” that bring greater good. I never would have known the beauty of a dandelion if I had not seen them through Wil’s eyes.

What is a weed if only your perspective of a weed? Who has ever experienced the joy of making a wish upon a dandelion fluff and watched your dreams float upon the breeze?

We only value what we see as valuable. And what we see as valuable is a matter of perspective. To open your perspective, you must open yourself to something “lesser” yet higher.

A New Flight Path

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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

Just Friends Being Friends

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“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.

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.”

STORIES OF WIL: PUBERTY PART 1 is now available on AMAZON!!

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PowerPoint Presentation
It’s here!!! We are so excited to make this announcement! This work of love is live on Amazon in both paperback and ebook format.
The purpose of writing Stories of Wil: Puberty Part 1 is to connect with families through relatable stories and raise awareness.
If upon reading this work of love, you find a benefit to you in these stories, please share your thoughts with others, and I’d appreciate your time in leaving feedback in a review on Amazon.com.
I’ve priced Stories of Wil: Puberty Part 1 affordably in both paperback and ebook format during these changing times (and free on Kindle Unlimited!).
For your copy, please click here: Stories of Wil: Puberty Part 1
Thank you for your readership, your love and support of our loved ones with Down syndrome!
XO,
Christie