down syndrome blog

Extra-Awesome

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It was 7AM. Wil was lying on his back with his chin jutted up and mouth wide open; soft snores were given free passage. I gently placed my hand on his shoulder. I felt his body give a quick shudder of awakening then his mouth snapped shut and he flipped his face to the wall, all without opening his eyes. He knew it was time to wake up for school.

Getting Wil out of bed is not the process it used to be. Last year some days could take thirty minutes of creative coaxing. And even that would not ensure a productive day at school. This year, however, his maturity has expanded. He’s had time to grow into his changing hormones that blossomed a year ago. He’s well into his second year at the middle school where the teachers, his paraprofessional and environment were all new to him. Consistency is everything to Wil. 

When in-person school was halted because of the pandemic last spring, Wil realized within himself the consistency he needed. Friday has always been Wil’s favorite day of the week and lunch has always been his favorite subject. How can you beat pepperoni pizza day? But lunch time is not just about the food, it’s about time with friends. Time with friends at school is what Wil missed the most during virtual schooling. Wil is just as excited for Fridays as he ever was, but now he’s excited for every other in-person school day too. 

Though our morning process has dramatically shortened due to Wil’s growing maturity and his boosted appreciation of in-person school, Wil is still, well, Wil. To motivate Wil, you must be on the same page as Wil. Force only sets you back; but an offer of a piggy-back ride may get you where you want to go. Negotiation falls flat; but bribes can be counted on. If he put the amour on tight that day, a sure-fire way to put a chink in the chains is through silliness. 

 “Waky, waky, Wil.” I started tickling him.

“Ok, ok,” he laughed, his head still turned to the side. “I’m up.” Then he fake snored. I laid across him perpendicularly, arched on my back, and let out some good ol’ cartoonish snores complete with a whistle (the only thing missing was a feather floating up and down).

“Hey moooom!” I kept snoring, ignoring him. Wil sat up in bed and pushed me off. “It’s time to get up!” I made a dramatic rolling fall to the floor. I knew now our morning was rolling in a forward direction.

“Mom, hug!” Wil never gets out of bed without a hug. Wil insists on it, and I never want him to stop. Because it’s what makes me stop. 

Before Wil was born, I thought raising a child with an extra chromosome meant you were born with something extra, too. But that’s not the case. It’s in taking the time to understand Wil’s way of thinking, and jumping full-in, that adds extra value to my everyday life.  Complete with extra daily hugs to back up that extra-awesome fact. 

There’s Just Something in the Atmosphere

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Over the years, I have found it less important how people approach Wil than how they have left an experience with Wil. Wil demands a shift of heart without demanding it at all.

I’ve been involved in our Down Syndrome Support Team’s annual Buddy Walk since Wil was 7 months old. Many walkers who attend this event are long-time attendees such as myself. And it is no surprise why. When new friends attend, a look of awe crosses their faces at the sheer uplifting feeling of it all. You may say it’s the music from the band, mixed with excitement from the silent auction, heightened with a sugar-high from the cotton candy. But I know it’s something far less tangible than that.

I do not know with what expectations or intentions people walk into our event, but I do know the feeling with which they walk out. And that they will come back again. There are no strangers at the Buddy Walk. Each and every participant is folded in like family no matter where they have come from or why they chose to attend. Come as you are and you are accepted as you are, no matter your level of acceptance. Though a welcome banner announces the entry, it is the atmosphere that invites you in. You may have no musical talent but pick up a guitar, the bongo drums or a tambourine and you are part of the band. You may have two left feet, but you will meet a favorite dance partner as soon as you step foot on the dance floor if you aren’t pulled onto it first. You may have been part of the Buddy Walk for years or just walked onto the scene, but you will be received with open arms and a mighty hug just the same. It’s just how our loved ones with Down syndrome roll. 

The Buddy Walk lives on in whoever has attended the event. But you needn’t have attended the Buddy Walk to know of the atmosphere with which I speak. It is our loved ones with Down syndrome who create this atmosphere and live their lives in it. And like any atmosphere, it knows no boundaries.

I’ve seen kindnesses emerge from a multitude of strangers upon entering the atmosphere Wil lives in. I have literally felt the shift in people. Not once or twice, but on a daily basis. Tight-lipped strangers visibly loosen – their eyes become softer, their shoulders relax and my personal favorite is seeing an unconscious smile spread across their faces. As they walk past us their smile holds on. You can’t smile on the outside without feeling it on the inside. 

I can try to teach a belief system about acceptance of our loved ones with Down syndrome until I’m blue in the face. But the atmosphere created by our loved ones with Down syndrome meets everyone exactly where they are, accepts them as they are, and gives rise to a new level of understanding without a single teacher at the lector. Our loved ones with Down syndrome demand nothing less of us without demanding it at all.

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.

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.

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…”