Christie Taylor Down Syndrome

Getting There

“I need him to hand me his boarding pass ma’am,” the security agent behind the podium said. 

“Wil, here, please just hand her this pass.” Wil turned away from me.

“Is it at all possible for me to hand it to you?” I asked the security agent. “Or answer any questions? I’m not sure if you can tell,” (Wil had his balaclava-style mask on) “but he has Down syndrome. Sometimes he gets stuck.” 


“He needs to hand me his boarding pass ma’am.” 

“Wil, buddy, you’ll be swimming in Grandma and Grandpa’s pool soon. Here, just hand her this boarding pass and we can go.” Wil didn’t move. “How about we hand her your pass together?” If I pushed further, I knew he’d be on the ground and then we’d have a real problem. I saw the same thought cross Katherine and Elizabeth’s faces. 

“Is that the mask he is wearing?” The security agent asked. “Well, he can’t wear that,” she said. “He has to wear one of these.” She handed me a blue surgical-style mask. I understand there are procedures to follow. I also know there is a time for grace.

“His ears are lower set and he has virtually no bridge to his nose,” I said, “so this style of mask isn’t very feasible for him.” I heard the security agent mutter an “oh.”

“We’ve flown with the mask he has on before without issue,” I said. I was starting to sweat. I knew I had a short amount of time before Wil was going to be immovable. Wil’s excitement about our trip to Florida was the cause of his overwhelm (he’s typically easy-going on flights home), so I forced myself to remain calm. 

And then grace happened – a security agent tending the line walked over and said to me, “It’s ok, go ahead.” She motioned to a security agent to our far right, who came over and said, “Come with me.” Wil thankfully followed her. As we walked away, I overheard the security agent in line say to the security agent behind the podium, “It’s ok, you were following the rules.” 

As we went through the security process, Wil refused to take off his backpack. The security agent told me I could empty the contents of his backpack, and he could walk through the scanner with it on. Wil felt the release of resistance, and he soon released his. We made it through the rest of the security process with few further hesitations. I gave the security agent a gratuitous thank you. 

At the gate, I made sure Wil didn’t sit down until we boarded the plane. I wasn’t about to lose our forward momentum! Once on the plane, Katherine, Elizabeth and Wil sat three-in-row; I sat directly across the aisle. The man seated next to me bumped my elbow to get my attention. He wore the same balaclava-style mask as Wil; I wondered if he was given issue for that. He lifted up his phone to show me a photo of a young girl with a bright smile and light-brown hair. She had Down syndrome. “She’s my niece,” he said. “She’s eight, the same age as my son. I love her like my daughter.” 

“She’s beautiful,” I said. 

“I know how it is,” he said, “some may not understand our blessings.” 

“Yes, for some it just takes more time to get there…”

Christie Taylor Down Syndrome

Beyond Words

“Give me a hug.” Those were Laura’s first words when she came over for a visit. 

A slanderous word had been directed at Wil that he thankfully didn’t hear (when I learned about it, this careless use of a word hurt me more than him). Even as Wil grows in maturity and in self-advocacy, he will always have a level of vulnerability that is indefensible, which is why it is key that we as parents and friends rise up to advocate for our loved ones with Down syndrome. And that is exactly what Wil’s friends did; they spoke up and their words righted a wrong. 

Words have the power to educate, to elevate, and to tear down. As powerful as words are, words can also fall short; notably in experiences when the day-to-day minutia of our lives vary enough from the norm to be easily misunderstood, or carelessly undervalued. One favorite example is from a school psychologist who was told in his early days of training that individuals with Down syndrome can be stubborn. “Well, ok, stubborn is stubborn,” he thought. After his experience working with individuals with Down syndrome he said, “I learned there was a whole new level of stubborn!” 

Laura’s hug articulated a level of understanding words never could. Laura’s son, Manny, who is almost 16 years old, also has Down syndrome. 

A podcaster who has a daughter with severe disabilities recently said that when raising a child with disabilities, you need friends who are doing the same. That these friends innately understand the specifics of your life because they live it too. She added that if at all possible, these friends would be your friends anyway. 

On St. Patrick’s Day, Laura and I were at a coffee house. We chose an outside table as it was unseasonably warm. Laura’s attention turned over my shoulder. I followed her gaze and saw a group of four young men walking in our direction. All of the men were dressed for the holiday; including the group leader with them. The men stopped by our table, and flipped the sheets of paper they held, conferred with each other, then looked down at flower pots, and up at signs. 

“Are you on a scavenger hunt?” I asked the young man closest to me. He had a slight speech delay and was not the least bit shy. He showed me his sheets of paper, and told me what they found already, and what they were now looking for. He was clearly enjoying this activity with his friends. Laura and I exchanged a warmhearted smile. An entire conversation passed between us without a single word. 

Like most mothers, Laura and I want our children to be happy. Laura’s two other children will soon be leaving home for college and careers of their own. I’ll be in the same position just over two years from now. Many of our friends are either experiencing, or soon to be experiencing, an empty nest. Our nests will look different; Laura and I are on the cusp of navigating what that will look like. Having a friend who understands the entirety of this upcoming new adventure, without explanation, lifts me beyond words. 

Though Laura and I connected through our boys, somehow I know we’d be friends anyway. There are some things you just know. 

Christie Taylor Down Syndrome

Receiving Butterflies

I was about two years younger than Wil when I hopped a fence with my friends. The top of the fence caught the back pocket of my favorite jeans and ripped them. I was devastated. Then my mom found a butterfly patch and ironed it over the rip. I loved that butterfly patch. Those jeans, once my favorite, now held special meaning; a memory I hold nearly 40 years later. 

Those jeans, though a simplified analogy, are resemblant to raising a child with special needs. The diagnosis ­­­­­­­­— the unexpected rip. The devastation. 

But you don’t know about the butterfly yet. 

In just this last week alone, I received a text from Wil’s friend, Lila Harvey, sharing a photo of what she called Wil’s “awesome hair.” Wil had piled up his sweatshirt on his head. I also received a video clip from another of Wil’s friends. The video showed not only Wil sinking a free throw in gym class (she told me he sunk two), but also of his friends jumping up to cheer and congratulate him. I received another message that Wil’s Connect friend, Jacob Mann (Connect is a program that connects typically-developing students with students who have special needs), is going to help Wil deliver a joke in the school announcements on Monday. I also received a photo of Wil and another of his Connect friends holding pizzas they had made on English muffins. Thursday night, Elizabeth had a basketball game in Chelsea — Wil entered wearing his noise-cancelling headphones. The ticket taker made a special effort to be friendly with Wil. When Wil and I sat down in the stands, he laid his head on my shoulder multiple times. He’s never outgrown such shows of affection. 

These are the threads of the butterfly. They are not large in size, but they are brilliant in color and meaning. The butterfly is personally delivered with nothing expected in return; the giving as transformative as the receiving. The butterfly is the gift of seeing anew what you once believed to be lost. The butterfly does not take the rip away, nor should it. The process of melding the butterfly to the rip is what creates special meaning; and memories you will hold close for years to come.  

Christie Taylor Down Syndrome

A Love Story

The girl stood behind the hospital wheelchair and clasped the narrow top of the plastic seat. Her mother, standing beside her (both about the same height) grabbed a handful of the girl’s pale blue shirt, directly at the small of her back, and wrapped it tight around her fist. The girl stepped forward, wobbly and deliberate, landing each step on the outside edge of her shoes, with a deeper bend in her left leg. I would guess the girl to be fifteen or sixteen years old, not solely by her height, but by her desired independence – her mother’s expert grip allowing for this. 

Further down the hallway the mother asked, “Are you hungry?” The girl nodded. “Well, let me push you then.” The girl kept walking.

“I know you don’t want to sit,” the mother said, “but we can get to the car faster for lunch. Come on, we’ll play race car.” The girl conceded, and supported herself along the edges of the wheelchair to take a seat. The mother grabbed the black-capped wheelchair handles and sped forward. 

Just last week I left Wil home alone while I took his sisters to school. Wil was stuck on which hat to wear. He’d been sitting in front of his plastic bin of hats for 20 minutes. “Sorry, Wil, time is up,” I said. “I’m taking your sisters to school because it’s not fair to make them late. I’ll see you in a few minutes.” He looked up at me and back down again, but didn’t budge. 

On our drive to school Elizabeth asked, “How late do you think he’ll go to school today?”

“Your guess is as good as mine. When I get home he’ll either still be stuck on the floor, or blasting his iPad to Luke Bryan thinking he has the day off, or running away in the back field.” 

When I turned the car back into our driveway, Wil was seated on the porch steps. His coat and backpack were on – he had put them on himself. Wil’s morning, though wobbly and deliberate, was also deeply triumphant for these things. 

It is easy to grow impatient, as hesitations are built into our everyday – I understand the wheelchair race car game well. I was having coffee with my friend, Laura Walsh, whose son Manny is also a teen with Down syndrome. We were sharing stories about mornings with our boys. Manny was taking his time getting dressed. “Put your freaking shoes on already! I wanted to scream. But of course, I took a deep breath and was calm.” We laughed so hard over that. Our patience may seem supernatural on the outside, but some days our brain begs to put the pedal to the medal. 

Our stories have been looked on with pity or sorrow. Our stories have been dismissed with careless derogatory words. Our stories have been seen as reserved only for “special” people. But when you really take a moment to observe, though our stories of navigating independence with our children may look different, in our own ways we are all wobbly, hesitant, deliberate, impatient and holding on tight to what we love, even as we let go. 

Christie Taylor Down Syndrome

Some-Day

Our family arrived at our rental condo at about 8pm on a Thursday night. We were in northern Michigan for a two-day ski trip, but Wil doesn’t ski. Our condo advertised access to two pools at the ski resort. The plan was for Wil and I to bounce between the two pools on Friday (Wil loves to swim) while Matt, Katherine and Elizabeth skied. On Saturday, Matt and I would swap places.  

The pool pass, a large blue wooden rectangle, was laid out for us in plain sight on the condo’s kitchen counter. Wil spied it immediately. “Go swimming, Mom!” 

I called the resort to inquire how late the pools were open. I was informed both pools were closed temporarily, but there was another pool open in the resort, only our pass didn’t give us access. My disappointment welled, but I tried to keep calm for Wil. Matt got on the phone with the rental company. How could they make this right for us, he asked; how about giving us access to the open pool? Sorry, the rental company answered, nothing we can do, but hey, you have access to free nature trails.

We racked our brains for other options for Wil. With the pandemic, most activities required advanced ticket purchase. Trail biking was not an option for Wil. The dog sledding looked really cool but they were booked through mid-March. We did have tubing tickets for Friday and Saturday, which secured an hour of fun each day. What to do with the other hours?

Friday morning, Wil and I dropped Matt, Katherine and Elizabeth off at the resort to ski. I drove away with no idea where to go. I passed a building labeled “The Nordic Center,” made a quick U-turn and cut back into The Nordic Center’s parking lot.

Once inside, Wil and I met Lee, the young woman working behind the desk. I explained our pool situation to Lee; that we were seeking an alternative. Wil is active, but he does have low muscle tone so cross-country skiing may quickly zap his energy and we’d be right back where we started. Did she have any suggestions?

Lee suggested snow shoeing for our next adventure. “Wil, these snow shoes are really easy to take off if you need a break.” (Lee spoke directly to Wil about anything pertaining to him, rather than to me. Though this may seem logical, it is often not the case. I appreciated her greatly.) 

The snow on the trail was packed down tight, the temps a balmy 40 degrees; near perfect conditions for Wil’s first attempt at snow shoeing. We made it further down the trail than I anticipated before Wil dropped to the ground. “Break, Mom,” he said.

Wil laid down and turned his gaze up. I laid down next him and breathed in the crisp, earthy smell of the trail. “Look, Mom,” Wil said. I followed his gaze to a tall, narrow, spindly-branched tree arched high above us; beyond it an expansive sky that answered every question you might have had about infinity. Wil turned his head toward me and smiled. I turned and smiled back.  

This was a someday moment. A moment I promise myself I will stop and enjoy — someday. A moment easily shielded by dashed plans and what-could-have-beens. A moment when I recognized time must stand still to grasp the unboundedness of it. A moment that I knew was exactly what I was looking for, without knowing I was looking for it at all.

Christie Taylor Down Syndrome

How Big Is a Millimeter?

Early animation was created millimeter-by-millimeter. To some, this is a tedious process — much too much work. Others enjoy the sinuous flow of the completed project, unaware of or unconcerned with the process behind the scenes. To the animator, however, the diligence, patience and love poured into every intricate detail has special meaning. Each development in the process, no matter how slight, contributes to the bigger picture. 

For Wil, getting dressed is an event. He may emerge from his bedroom decked out in grey and declare the day “Grey Power!”  There was a “Red Day” when, you guessed it, he wore red from his hat down to his socks. Wil is equally excited about his blended color outfits, or his self-proclaimed “fancy” or “handsome” collared shirts — accurately meeting both descriptions.  

Wil’s dexterity has not reached the point where he can tackle buttons on his own. Wil’s button-down shirts are hung in his closet with the top three buttons undone. That way he can maintain his independence by pulling the shirt over his head, only needing my help for those last few buttons. As I fasten the very top button, I ask, “Isn’t that too tight?”

“Ugh, mom, no!” Clearly, I do not know fashion. 

Wil’s teenaged response reels me back in time, as I often am, triggered by one of his words or actions. I’m reminded of all the still-frames in time pieced together, millimeter-by-millimeter, to create the moment we are standing in now. Such a typical scene, and yet, it’s not. 

I’m brought back to a 3-year-old Wil, his hair nearly white-blond and wispy. His voice light and sweet, with an upturned, cheerful innocence. Wil sits across the table from Ms. Theresa Herron (Wil’s speech therapist since he was a baby through his grade school years). Wil points at one of the flash cards laid on the table; upon each card a picture with a word describing it. Wil is learning how to pronounce the words on the cards. He’s also learning to make associations with the pictures as they are placed into a scenario. During each session, Wil and Theresa find something to giggle about.

Theresa had an iPad set up on the table, which was an advanced concept at the time, and she videoed certain sessions. The videoed sessions, seen one at a time, may appear to be near repeats of Wil pointing at this, then Wil associating this with that. Progress made might be difficult to detect. However, if you chose to press the fast-forward button to view continuous sessions, you would enjoy a sinuous flow of Wil’s clear advances over time. 

Theresa and I were like the animators as we reviewed each session — we rejoiced in every millimeter of change. Theresa would note how Wil enunciated a word in a slightly different way, or how he made an association he hadn’t before. If he’d been experiencing a roadblock, she’d gather the information we had so far and indicate a new direction to move in. Our shared celebration of each session ran deep, as we both valued the magnitude of each millimeter.

Over 10 years later, Wil’s vocabulary has greatly expanded thanks to the strong foundation of his early speech therapy days. Wil’s ability to communicate has been vital to his flourishing independence.  Even Wil’s “Ugh, mom, no!” is so teenage-typical, and yet it’s not. We stand on a mountain of millimeters, special meaning built within every intricate layer, in this sinuous flow of life. 

Christie Taylor Down Syndrome

The Dance

When Wil was born, I wondered on his differences. How would they separate him from making friends? How would his differences separate him from living a full life? What I didn’t know was Wil’s differences would become woven so deeply into our daily lives that they would be our norm.

One example is Wil’s dancing. When the mood strikes, Wil busts a move down the aisles of Target, Busch’s or Meijer. Wil gets jazzed going shopping with his sisters, because there are mirrors hanging everywhere to dance in front of. 

Chopping vegetables with me for dinner is always a hip wiggling activity for Wil, and a car ride another opportunity to belt a tune out the window.  

Wil’s had the music in him for so long, it’s ingrained in our lives. I forget that not everyone dances whenever the mood strikes, or bounces to the beat in their car seat, until a stranger gives Wil a smile as he rocks out to his own tune. I smile inwardly to myself, as I smile outwardly back to the stranger, how one-dimensionally I once viewed what differences meant. 

Wil’s dear friend, Sarah, is a ballerina. Sarah is graceful in every sense of the word. She is tall and lithe, and practically floats on air when she walks. Wil has low muscle tone so he lands flat-footed with a slight side-to-side gait. I love watching the two friends walk together, because they could not carry themselves more differently. Sarah, however, always makes a point to walk at Wil’s speed, and when he talks, she leans over so they are eye-to-eye. Then, I can almost predict at some point during their conversation, Sarah will throw her head back laughing at something Wil shared with her. And they always find time to share a dance. It’s been that way since preschool. 

On Wil’s 14th birthday, Sarah wrote in a beautifully-crafted handmade card to him: 

“I am so lucky to know you. You are so amazing and always make me laugh. Goodness, you’ve gotta be the funniest person on this Earth! Your laugh is so contagious. I always have fun walking around with you and talking about lots of things. Hope you have the best birthday bud!” 

As I read Sarah’s words, my eyes welled with tears. I now wonder, these 14 years later, how on earth did the differences I once so worried on become a true blessing? That this life, that such friends, have woven themselves into the dance of our lives as our norm. 

At one time differences stopped me in my tracks. Now, all I see are blessings in the dance. 

Christie Taylor Uncategorized

It’s What Friends Do

Wil’s closest friends are five girls from school; all typically-developing. In our tight-knit community, I hear over and again how special Wil’s friends are. And it’s true. They are. My gratitude is high because I know in another tight-knit community – the community of parents who have children with Down syndrome — Wil’s friendship circle is not commonplace. I wonder, is there a special ingredient these friends have that can be shared? What exactly is it that sets them apart? 

One obvious answer is Wil sets himself apart. Not by intention, but by his nature. Wil is funny, silly and goofy at times; as most of us can be. Wil belts out a good tune, and hugs heartily; as most of us are moved to do. Wil grows tired, grumpy and impatient; as we all can. Wil, however, takes all of the above to a slightly, and other times very, different level than most of us. 

Last year, I drove Wil through the McDonalds drive-thru to get a Sprite (his reward, aka bribe, for not ditching the school bus to hide in the stairwell. Thanks to a team effort with his teachers, we uncovered another motivator before his teeth rotted).  

“We-we-we-welcome back to McDonalds. Wh-wha-wha-what can I get you?” We were asked via the speaker under the drive-through menu. Wil mimicked the words verbatim, then laughed. My child with special needs was making fun of another person with special needs! How could he? Then I thought on this. We all have varying levels of differences. And this was an unfamiliar difference to Wil. A typical reaction for a child, and even adults, is to make fun of what is ununderstood. So, in effect, Wil was responding in a typical way. I marveled at the irony. I also wasn’t going to stand for it.

I turned around in my seat, looked Wil in the eye and said, “Wil, that is how he talks. Just like you talk the way you do, Elizabeth talks the way she does, and Katherine talks the way she does. We all talk differently. There is nothing to make fun of. Sometimes all you need to do is be patient and listen.”

“Oh, ok,” he said. I pulled up to pick-up window, and Wil leaned forward from the back seat and waved, yelling, “Hi!” Then “Thank you!” Wil has good manners when he’s not being a pistol.

One of my favorite quotes from Wil’s friend, Ashely Bobo is, “That’s just Wil being Wil.” She says this with a shrug and a smile, as any friend would. When Wil grew tired in gym class, he laid flat on the floor as his friends jumped rope. When he was ready, he hopped back into the jump rope game and his friends cheered him on.

Another favorite quote is from Wil’s friend, Lila Harvey. Wil and Lila were playing on the slide at the playground. Wil decided to plant himself at the top. When it was clear to Lila he wasn’t budging she said, “Stop fooling around Wil and get down here!” Wil considered this for a beat, then down he went. Lila knows how to call his bluff, as any good friend would.

Wil and his friends do not have a level playing field, yet they built a friendship on common ground. They are not perfect, either (everyone needs a reminder to use their patience and listening skills now and then). What they have created together is a friendship circle. In the center a revered place to meet, surrounded by a wide breadth of latitude for their varied level of differences. A circle that is absolutely duplicatable; and yet it is not commonplace. That is exactly what makes this group of friends so very special.

Christie Taylor Down Syndrome, Uncategorized

Finding Wil Taylor

Wil may have only been about 4 years old, but he had mapped out every “Employee Only” door in every grocery store he’d ever been to. As I turned to pick an item off the shelf, he’d make his move. 

My stomach dropped as I noticed his absence, then my brain registered what happened. I quickly scanned the area for the nearest “Employee Only” door. In the line of sight from my cart to the “Employee Only” door, Wil would surely be found making his mad dash — if I was lucky. Other times I’d look up to see the door swinging, and knew in a moment an hair-netted employee would walk out holding Wil’s hand. 

When Wil had barely learned to walk, I took him to Kohl’s for new shoes (Kohl’s had the extra-wide high-top shoes that fit over his ankle-length orthotics). Wil was securely seated in the baby seat of the Kohl’s cart. I knew the shoe I wanted so I only had to scan the shoe boxes for his size. In the seconds it took me to find the right size, I turned to find both Wil and the cart gone. My heart seized. Someone had wheeled off with my child. 

“Lost child?” A nearby shopper read the fear on my face. “Is that him?” 

I followed her point to see Wil’s little self, his arms stretched as high as they could reach, pushing the cart down the aisle. Not only had he barely learned to walk, he’d also Houdini’d himself out of the safety strap in mere seconds. 

About 5 years later, Wil escaped the eyes of a group of mothers at Chrysler Arena during our daughters’ basketball camp. “He was just right here!” One of the mothers said. “Exactly,” I replied. Fortunately, the arena was only open for our daughters’ camp, so there were no other visitors. We split up to find him, sprinting down the empty halls. One of the Chrysler Arena employees spotted Wil on the security camera nearing the outside doors. When I caught up to him, he said, “Car, mom.” He was done being at Elizabeth’s basketball camp.  

Now that Wil is nearly 14 years old, he doesn’t run off like he used to. Occasionally I’ll get a call from his paraprofessional that Wil bolted out the door at school, and that she’s chasing him across the soccer field in 20 degree weather without a coat. Most of the time though, Wil tells us when he is tired, overwhelmed and needs a change of scenery. But his taste for adventure has not dissipated with his increased vocabulary.

On the weekends at home, Wil puts on his coat, hat and gloves (the only help he needs is starting his coat’s zipper). Then he says to our yellow lab, “Come on, Woody, we are going on an adventure.” 

I watch them run off into the field together, thinking of all the ground we covered to get to this place.

When Wil returns he throws the door open, pink cheeks lit by the cold air, his whole being exuding an aura of energy only the outdoors can deliver. I breathe it all in thinking, this is what Paul Bunyan must feel like after an adventure well-lived.