Down syndrome parenting

A Sucker for You

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Communicating with Wil is an incredible experience. Though he has been in speech therapy since he was months old, he has always been one savvy communicator.

A tilt of his head and a smile melts you into a puddle of mush on the spot. When music takes him over, his good vibes serendipitously course through your veins with no conscious thought on your part; you find yourself both curiously and delightfully boosted. When Wil walks out the door and is hit by a breeze, he opens his arms wide and spins round and round. “Fresh!” he says into the air — this one word an invitation to open yourself to the dizzying, fresh new moment with him.

To hear Wil put words to his emotions is one of my true delights. A back-and-forth conversation with Wil was once a dedicated dream, and is now our reality. Though Wil now has a full and colorful vocabulary, he continues to be the master of condensing a myriad of meaning into one word or action.

In October, I shared with you a story about Wil refusing to sleep in his own bed. He was not forthcoming about the reason for his refusal, though he has the words. I peppered him with questions and eventually drew out one key word from him: “cats.” From that one word I had my answer. The source of Wil’s bad dream was from an “Elmo Pets” DVD. There is a “Cats” segment where a puppet tiger pounces onto the scene with a roar. The puppet is soft and cuddly, but the element of surprise combined with the loud noise terrifies and mystifies Wil. Before the bad dream happened, I found him in his room playing the tiger scene over and over. Like cranking the handle of a Jack-in-the-Box, the predictable surprise continues to startle. I removed the DVD, and the DVD player, from his room.

He’ll now sleep in his own bed for short bouts, but invariably I’ll wake up to find Wil camped out in the living room in his sleeping bag. Whenever Wil spends the entire night in his room, I commend his progress: “Great job, Wil! You slept the whole night in your room. How about we go for another night?”

After a considerable moment, Wil replies, “Maybe.” Oh, the ubiquitous power of one word!

Last week at school Wil walked down the hall with his paraprofessional, Kristi Campbell. He held a fistful of Blow-pop suckers he had been given as a gift. It was nearing time to pack up his things. While many days this is not a problem for him at all, on this day the transition built up in his mind and became overwhelming. Though he has the words to express his feelings, when the overwhelm overtakes him, sitting on the floor gets the point across much more efficiently.

Many passersby offered Wil encouraging words to motivate him up off the floor. On certain days, this encouragement breaks up the overwhelm for him. But there are also days when Wil needs a total 180 in thinking to turn his thoughts around. Kristi read what Wil was communicating that day as he remained unmoving on the floor.

“Hey, Wil,” Kristi said matter-of-factly, “can I have one of your suckers?”

“Sure,” he said.

“Ok then, let’s go.” Wil stood up, handed Kristi a Blow-pop, and they walked to his locker to pack up his things.

While Wil speaks volumes with one word or action, cracking his code can be another thing altogether. Yet when one savvy communicator meets another, it can be as easy as asking for candy from a 13-year-old.

(photo: Kristi and Wil)

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.

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.

Yippy!

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Wil was sandwiched between Katherine and Elizabeth in a 3-seater row. At 10 years old, Wil had made this flight to visit his grandparents nearly as many years. Though nestled between his sisters, Wil reveled in his independent position across the aisle from me.

The first two hours of the flight were without incident. Then a high-pitched yipping sliced through the last hour of our flight. Wil immediately clamped his hands over his ears and folded himself in half (a hypotonic trick), his chest directly on top of his legs. A tiny dog, seated in the row directly in front of him, would not let up its rant. Elizabeth snapped her head in my direction. I read her mind instantly: Where were Wil’s noise-cancelling headphones? I thrust my finger at Wil’s carry-on bag in front of his seat. She grabbed the headphones and placed them over Wil’s ears.

Have you ever watched a movie barely noticing a curse word, but when you watched the same movie with your kids you were shocked at how many curse words there were? That is how loud noises are when I’m with Wil. I know they can pop up unexpectedly, even in familiar situations, and I need to have noise-cancelling headphones at the ready.

Wil was in such an agitated state from the tiny dog’s yipping, that the headphones didn’t calm him. I pulled him up from his seat and sat him on my lap across the aisle. While soothing Wil, I was startled by a flight attendant standing near my seat. She stood in such a way that she blocked Wil’s view from the yipping dog. She handed Wil a packet of pretzels, then discreetly showed me a snack size Milky Way bar. I nodded my head.

“Here, Wil,” she said, handing him the Milky Way bar. “This is what you do. Take a bite of pretzel, then a bite of chocolate. It’s the best.”

I couldn’t tell if Wil was marveled by this idea or by seeing a new, friendly face. Either way, he was blissfully distracted from the yippy background noise. Marcie introduced herself then asked Wil how old he was, his teacher’s name and what he liked to do for fun. Wil made a few sideways glances past Marcie toward the yippy dog, then she’d draw back his attention by asking another question.

When the pilot announced our plane’s descent, I knew Wil would need to return to his seat. Marcie smoothed the way with two extra Milky Ways (“for later,” she said with a wink). She also gave Katherine and Elizabeth a few Milky Way bars for being the best sisters.

Wil made his way back to his seat, nestled again between his best sisters, all richer for their Milky Way bars and for knowing Marcie.

To this day, 3 years later, I could swear I saw a hazy band of light following Marcie as she made her way down the aisle.

Drop It To The Floor!

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When Wil drops himself on the floor, there are times when someone who doesn’t know him well will step up and say, “Let me try.”

“Have at it,” I say. Then I sit back and observe what I already know is going to happen. I can’t always predict the exact words, but I do know the tune with which the words are played. It’s a sweet tone; syrupy sweet. The notes tilt up as they go, the sentence always ending in higher notes.

I know this tune, I’ve used it before. But it’s not getting him off the floor. Though the tune is sweet, the words are still based in someone else’s agenda, not his. And he knows that. If the Pied Piper came to town, Wil would be the sole remaining child. Unless, of course, the Pied Piper was well-versed in Luke Bryan. Then Wil would fall into step.

If it’s not his tune, he’s not budging. Though he may appreciate the sweetness of the notes, underneath it he knows it for what it is. Your tune, not his. No amount of syrup is going to slide him in your direction. Unless of course, it’s in a bottle of Sprite. Then you’ll be singing his kind of song.

At home, if I want more of a cool, calm vibe, I’ll ask Alexa to play “Van Morrison Station.” Wil will throw his head back and holler out, “Ugh, Mom! Alexa play Luke Bryan Station!” Then he’ll start breaking out his latest dance moves. “Watch this, Mom!”

It’s not that hard to get Wil off the floor, unless, of course, you aren’t playing his tune.

I AM NOT GRATEFUL

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November is the month of gratitude, so I thought it timely to share this previously written post on why…

I AM NOT GRATEFUL

I was not grateful when I learned Wil had Down syndrome.

I am not grateful my marriage was challenged by our differing timetables of acceptance.

I am not grateful my relationships with certain teachers have been strained by differing ideas of how to approach Wil’s behaviors.

I am not grateful that I’m entering an era of hormones, girlfriends, and widening gaps within Wil’s peer group.

I am not grateful for the stereotypes and ignorance my son will experience.

I do cry. I do get angry. I do get frustrated. I do things I regret. I am not grateful for these things.

I am grateful for a deeper level of acceptance I would not have known if Wil didn’t have Down syndrome.

I am grateful my husband and I now share a deeper bond and respect for the challenges we worked through.

I am grateful that each day, month, and year, I learn more about special education laws, advocacy, and the fact we are human and make mistakes.

I am grateful for second chances.

I am grateful that I have come to know a strong group of proactive parents I can laugh with and learn from. I am grateful to call these strong, compassionate people my friends.

I am grateful these experiences have compelled me to widen my perspective.

I am grateful for the advancement of acceptance so my son may have increased opportunities for a fulfilling life.

I am grateful I can contribute to the advancement of acceptance and increased opportunities.

I do smile. I do rejoice. I do feel joy. I do things I am proud of. I am grateful for these things.

I am grateful my gratitude creates a deeper well for the times I am not grateful.