Down syndrome

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.

Flipping the Coin

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“Mom walks very fast,” Wil said.

I looked behind me, and smiled at Wil. “I do walk fast, don’t I? Would you like me to slow down?”

“Yes, please.”

I stopped, my head turned his way as he walked up and stood next to me. I slipped my hand in his, and we walked forward. I was careful to keep pace with him, and not the other way around.

His hand was soft, his smile was sweet, the lights above brighter, and I felt brighter inside, too. All around me life felt softer, higher, more enjoyable. I breathed it in. Wil noticed my breath, and he mimicked my large inhale. We both broke up laughing. I vow to enjoy this pace more often.

Wil flips the coin every day. While some see his pace as a detriment to his quality of life, I’ve come to know his pace as a great asset in absorbing the multiple qualities of life all around us — at any given time or place.

Steps to Independence

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I walked Wil into his first day of camp, then I walked back to my car. I shut the car door and cried for 5 minutes straight.

I couldn’t stop seeing Wil’s face in my mind. His big, wide eyes looking up at me above his mask. I knew that look. He was trying to be brave. He was trying to do what I wanted him to do. He was trying to do what he wanted to do. To do camp by himself. But he was scared. The innocence and trust in his eyes is so pure. It’s beautiful and terrifying at the same time.

Wil was all a bundle of joy on the drive to camp. Country music a-blaring, he was bouncing in his seat and yelling his songs out the window. No matter it was 19 degrees, the music in him was too big to be contained within the walls of the car. It needed to be released into the winter air.

He was most excited about his lunch. We stopped on the way to camp to pick up a Lunchable to pack along with the carrots, cheese, crackers and water bottle I packed at home. The Lunchable was a special treat – he chose the ham & cheese sub with the little Pringles packet and 2 Oreo cookies.

With weeks of virtual school, and now Christmas break, Wil’s mojo has slowly been declining. Wil is an energetic kid by nature, and I am very mindful of nurturing that energy. Wil has low thyroid, so it would not be hard for him to fall into sluggishness. For both physical and mental health reasons, it’s key to keep his energy high. And I know, personally, how physical and mental health go hand-in-hand.

For Christmas, Wil received a mini-trampoline and Luke Bryan CDs. I knew he’d love jumping around to his favorite country singer. I also bought one Luke Combs CD, because I knew Wil would want me to take turns with him jumping to music, and Wil has me about burned out on Luke Bryan! (Wil is agreeable to adding Luke Combs, Alan Jackson, Blake Shelton, Johnny Cash, Zac Brown and Kenny Chesney to his music selection on occasion). 

When I came across an email that the Saline Rec Center was having a winter camp, I read into it further. Then my heart sank when I read the age group was for kids ages 5 through 12. I knew Wil would not want to be with the 5-7 year old children, as he’s very much a teenager, but I also knew he’d enjoy the activities the 10-12 year old’s would be doing. As Wil is 13, I thought the camp director may make an exception. No hurt in asking, so I did. 

When I called the camp director and mentioned that I had a 13-year-old son with Down syndrome I’d be interested in signing up for the winter camp, her first questions surrounded Wil’s interests. This may sound routine, but whenever I mention Wil has Down syndrome, the first questions typically surround what his limitations are. Let that sink in a minute…when you are asked about your child, are the first questions about what they can’t do? 

Raising Wil, there are multiple micro intricacies like this that pop out in our daily lives. Many times, people are not being unkind, it’s truly a matter of not knowing. And you don’t know until you do know. I just happen to live in the know in this particular category. So when you meet people who are in this type of know, you don’t miss the cues, no matter how small. And the cues usually are small –which is what makes them so big.

The topic of Wil’s limitations never came up directly. In discussing who Wil was as a person, the conversation naturally unfolded into what his triggers were for certain behaviors and what extra help in certain areas he may need. The camp director determined that how the camp was structured would be a good fit for Wil, and described the group she would place him in (with 10-12 year olds). It also so happened that the staff member leading that group has an adult sister with autism. Though Down syndrome and autism are very different, there is a deeper understanding gained in growing up with a sibling with special needs. 

When I met the staff member leading Wil’s group at the camp, I knew right away he would be a good fit for Wil. Wil had a Master’s baseball hat on, and he said to Wil, “Ahh, the Masters! I love watching the Masters. So you play golf, Wil?”

“Uh huh,” Wil said. Wil looked around at the other kids that were playing ball. His eyes were wide and nervous, but he also wanted to join in the fun. The staff member got Wil settled and I asked him about his sister. 

“She’s doing great. She has her own agenda, you know?” I nodded. In his words were a whole world I knew. I didn’t know him, I didn’t know his sister, but I understood what lived under those words. There are pieces of this life that are difficult to articulate. They have to be lived to be truly understood. Even though each piece has its own personality, underneath it all the emotions are the same. And that’s where we met. It’s the same place I meet my friends in our Down syndrome support group. We don’t have to explain, thank goodness. Explaining takes too much energy and the words always fall flat. It’s an enormous comfort when you meet someone underneath the words. 

With the combination of the camp director and the leader of Wil’s group, I knew he was in good hands. It was time for me to go, and give Wil his first day at camp. I gave Wil a hug, said good-bye and walked back to my car. 

These are my first steps in opening Wil to greater independence. It’s a feeling I’m not sure I’ll ever be able to articulate accurately with words. But if you saw Wil’s eyes, you would know exactly what I mean without my saying a word.

In Kindness

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Wil was having a challenging day last Thursday. I drove up to the school anticipating driving Wil home. When I walked into his resource room, Wil was seated in his chair with his feet flat on the floor. His torso was twisted toward the back of the chair, his head tucked down. He reminded me of a sleeping flamingo.

“Hi Wil,” I said.

“Hi Mom,” was his muffled reply.

Kristi Campbell, Wil’s paraprofessional, showed me two ornaments given to him by one of his Connect friends, Alyssa. Alyssa had made ornaments for all the students in the resource room. She had delicately hand-painted snowy landscapes, elves, and other holiday pictures on circles of wood. Each circle of wood had a string inserted into it for hanging. Attached to each string was a felted red bow.

“Wil, these are very special ornaments. We’ll have to find a special place on our Christmas tree for them.” Wil lifted his head and a smile spread across his face. That is one of my favorite traits of Wil’s – his joy always finds a way to break through the surface.

“Do you want to go home?” I asked. He nodded. “Ok, let’s get your things and thank Mrs. Campbell.”

Wil came out of his reverie and stood up. He loves Kristi Campbell (as does our entire family) and wouldn’t miss an opportunity to say good-bye. Another educator in the resource room walked over to the microwave to heat up her lunch. Wil watched her.

“Are you hungry?” Kristi asked. Wil nodded. The lunch period had just started so Kristi and Wil talked it out and decided to head to the lunchroom. I hung close on the way to the lunchroom, just in case Wil changed his mind. Wil’s friend, Lila Harvey, was seated at a lunchroom table with her friends. She is a smart girl and knows Wil very well; so I’m sure upon seeing me, she pieced together what was happening. She waved Wil over to their table.

“Lila!” Wil said. After that, I doubt Wil even remembered I was there. He joined Lila and their friends at the table. Wil went on to have a Rockstar afternoon.

As I walked out of the school, feeling thankful for Kristi and Lila, I was reminded of another school morning exactly one week before. It was the first day back to in-person school after restrictions had been lifted for Kindergarten through 8th grade (Wil is in 8th grade). With the new re-opening, only the front door leading to the office was unlocked. When I dropped Wil off at the circle, he ran up to one of the many front doors that are typically unlocked in the morning. Discovering it was locked, he moved on to the next door. Locked. I pulled around the circle into a parking spot to be sure he got in. As I did so, I saw a taller boy walking up to the school. He motioned to Wil and opened the door that led to the office. The tall boy lifted his arm up high on the door to hold it open, and Wil walked under his arm through the door.

Over time, I’ve realized that inclusion has many meanings. And from what I’ve observed, so do kindnesses. Whether done in big or small ways, they all have great meaning in their own way.

Wil and Lila

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…

Leveling Up

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As the kids are in school virtually, we packed their Chromebooks and headed to the airport. We decided to visit my parents in Florida for ten days.

We checked our luggage with the airline, then made our way through the security line. When we stepped up to the security guard at the podium, he took our boarding passes and asked our names, stern-faced, one-by-one: “What is your name, young man?”

Wil wore a buff as his face-covering. His ears are small and lower set, the bridge of his nose is nearly non-existent (which makes wearing glasses a challenge too, but sure makes for a cute face). A buff stays put on his face, unlike a typical mask, and thus the only face-covering he is agreeable to wearing for extended periods of time.

The security guard asked again, and his sternness intensified. With this second request, I understood what was happening.

“Sir,” I said to the security guard, “sometimes he pauses when he talks. But it’s hard to see that with his mask on. Could I pull it down so you can hear him better?” I pulled down Wil’s mask and I heard the security guard gasp.

“Oh, I’m ah, oh I’m sorry.” The security guard said. “I just, ah, needed to know his name.”

“It’s ok. He can tell you. He just needs an extra minute sometimes.” I looked at Wil. “Tell him your name.”

“W-w-w-wil Taylor.” If the security guard had asked Wil to sing “Knockin’ Boots” by Luke Bryan, Wil would have belted out every single word without hesitation. But sometimes when Wil talks, the words get stuck. But the security guard didn’t know that. By his reaction, he likely didn’t know Wil had Down syndrome until I pulled his buff down.

“Thank you, Wil Taylor.” The security guard said and handed Wil his boarding pass with a smile that I didn’t know existed moments before.

We placed our carry-on bags on the conveyor belt to be inspected. The security guard behind the conveyor belt flashed Wil a huge smile. She leaned forward and asked me, “Are you Mom?”

I responded affirmatively and she asked Wil’s age. “Oh, he’ll have to take his shoes off then,” she said almost apologetically. “Can he take his shoes off by himself?”

“Yes, thanks. Wil, take off your shoes.”

“Will he be able to walk through the security panel and lift his arms over his head?” She treated Wil much younger than his years, but I knew her intent, and that was to make this as pleasant a process as possible. I appreciated her kindness.

Later as we went out for dinner, the server asked, “What would you like to order, Sir Wil?” She waited patiently as he got stuck on getting out the word “cheeseburger.” Once he did, she then asked him what he’d like on it, without giving me a glance. He listed the condiments he wanted then he added, “and a Sprite.” She came back, not with a kiddie cup as some servers do, but with a big, clear glass full of bubbly Sprite.

We all meet one another at varying levels of understanding and acceptance for our life experiences. I’ve discovered that no matter how varied our understanding is, we can always meet one another on common ground through an extended smile or an added kindness. And sometimes, as you watch the bubbles of a Sprite rise to the top, all feels level. It’s both the easiest thing to take for granted and the biggest thing in your world.

Time after Time

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Wil was an easy-going baby. I had to wake him to eat or he would have slept right through his feeding time. Which makes me chuckle now because his favorite subject is “what’s for dinner.”

Picking up his first Cheerio with a pincher grasp took miles of work. I still remember the day he picked up a singular Cheerio not with his fist, but between his index finger and thumb. Each time Wil picks up a pencil, holds a sheet of paper, or places his fingers on a keyboard, I’m brought back to the celebration of a singular Cheerio.

Wil smiled a lot as a baby, and he still does. He is quick to laugh and I know there is a silly bone in there somewhere. Many of his frustrations, and mine, are in his speech delays. When it was quiet and relaxed at night, just before bedtime, I’d sit on the edge of his bed and we’d talk about his day — which consisted of me asking questions and he’d nod or offer one-word answers. On certain occasions, the tears would flow. It was hard for both of us. He simply couldn’t tell me what hurt him, and the best I could do was guess and give him lots of hugs. Now, when he jumps in the car after school and says, “I had a good day, Mom!” and opens up about his day, it’s as if a tidal wave hurls me back in time to the success of a singular word or a head nod.

Wil’s best-loved school assignment is to write his own stories. Getting him to focus can be a task, but when writing or reading his own story, he’s all about it. And you can be sure each story contains a dose of silly. Wil’s most recent story is about an evil bunny who stole a jack-o-lantern. The evil bunny’s name? Luke Bryan, of course.

When I hear Wil read his own stories, a golden rope grabs hold of my wrist. It pulls me back, twisting, turning, weaving through the memory of stories built before this one. There is no place on this intertwining journey forgotten or unrecognized. Each story has been faithfully pieced together, one upon the other, to stand firmly where we do now.

When Wil finished reading his evil bunny story, he knew the next part of his assignment was to type it. “It’s so long, Mom.”

“It is, Wil, but you can do it. One word at a time.” And so he started, one word at a time. Soon he was in the flow of the story, pausing to laugh at his own words.

Nearly finished typing his story, Wil looked at me astounded and said, “Look how far I’ve come!”

Word-by-word, faithfully written, with pauses to laugh; these are the stories that draw you in, indelibly, time after time.

The Ghost of Pain

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Not too often, but every once in a while, and it happens when Wil is doing something active like playing basketball or fishing, a transparent form of Wil superimposes himself over the real Wil.

The transparent Wil moves and plays in perfect time with the real Wil. The only difference is the transparent Wil’s limbs move fluidly, and are slightly longer and lither; his eyelids rounder, his ears higher, his hair wavier.

Just like a ghost from the past, the transparent Wil never announces his arrival. I’m both struck with shock and familiarity when he shows up.

I used to question myself when these transparent visions would appear. Deep down I know my acceptance of Wil’s diagnosis. I took the very steps to full acceptance myself, because no one can take those steps for you. You can be supported, lifted up, and cheered on, but it is you who must cross that very finish line on your own two feet.

I crossed the acceptance finish line long ago. So why do these visions appear? They don’t come often, but shouldn’t they have long faded into the past?

But that’s not the way it works. When Wil was a baby, and I was on my journey to acceptance, I would stare at his almond shaped eyes, cup my hand over his short-stubby fingers, and find myself falling in love with all the features that initially terrified me. The features that are considered “markers” for Down syndrome.

But even with acceptance, sometimes the brain just wonders. When I see these superimposed visions, they are not filled with longing. They are not filled with pain. They feel more like observations. And that is why I can accept the visions too.

I’ve learned so much with this acceptance process. Acceptance always starts with a deep pain. A pain surrounding something you did not expect. A pain that wants to make a home in the pit of your belly and never leave.

Sometimes, though, you have to sit with that pain in your belly for a while. Let it burn down deep. Let it light it’s fire until it’s too painful for you to let it stay. And there will be so many well-meaning people saying to call out for help, and though you desperately need help, you don’t exactly know what kind of help you need. So you have to sit with it. Feel it. Assess it. Journal it. Hold a friend’s hand while feeling the fire. Share what the fire feels like. Don’t paste over it – don’t try to make it look prettier than it is. Don’t stuff it down, don’t cover it. It will burn its way back up with a fury. Just don’t sit with it too long. Or the pain will become part of you. It will hurt, but it will be habit. And you owe yourself more than that. When we find our way out of the fire, it’s never in the same place where it was set.

When I see the transparent Wil, he doesn’t threaten my acceptance. Because I sat with him when he was a fireball of pain. I felt my loss for him. I held my friends’ hands and talked about him. I made peace with him. And I let him go.

I’m not sure our pains ever leave, but how we look at our pain is what changes. Now when I see transparent Wil, he is a reminder of how far I have come on this journey. How I can sit with the pain. How I can let it go, even when it comes back.

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.