Christie Taylor Down Syndrome

True Nature

When Wil said, “Walk to the river, Mom,” I left my phone on the countertop, took off my watch and grabbed our mud boots. With the constant tug of a virtually agenda-driven world, I was more than ready to leave behind the volitional tools that bound me to it. Woody, our yellow lab, perked up his ears at the word “walk” and was quickly on our heels as we hurdled out the door.

It was late April and the temps had recently warmed so the bugs were sparse. We reached the tree-cover and squished through mud over imprinted deer tracks. Deep puddles and fresh, bright green undergrowth lined the path. We could now hear the river and it sounded cold. Woody ran ahead and plunged in as if it were a hot summer day. He plodded around the shoreline looking for water bugs that weren’t yet existent, then swam out to the center of the river. He paddled against the current like he was on a treadmill; running hard but getting nowhere. He eventually grew tired of the grind and veered off to the other side of the river and played along that bank. 

Wil slid down a muddy embankment and stretched his legs into the river. His muck boots filled with water. “It’s cold, Mom!” He got his footing and waded out until the water reached the bottom edge of his shorts. Then he reached down into the river and pulled out a smooth, black rock. He held the rock up to admire its sheen, then threw it in the air. “Catch Woody!” 

Woody swam back across the river, even as the rock sank to the bottom; his loyalty to Wil’s call. Wil reached down for another rock, again admired its smooth surface, and tossed it. “Go get it, Woody!” Wil found a few more smooth rocks, taking a moment to admire each one, tossed them, and Woody swam toward each splash. Wil moved on to tossing sticks, which were retrievable for Woody, but watching the two play this game, I saw that winning was not about retrieval. The win for both was in the play.  

A red-headed woodpecker flew across the river, landed on the side of a tall tree, turned his head toward us and called out. He then silently stared at us for a moment, decided we were not a threat, hopped up the tree and went on with his business. 

I sat down on a low, flat rock and breathed in the earthy smell. Green buds popped out on branches all around me. The scene was picture-perfect; and yet I was thankful I had no means of taking a picture as it would steal the nature of the moment.  

Thank you Wil, for leading me on this winding, earthy, budding, flowing, green and boundless path, where there is always something found to admire and the win is in the play. Your true nature always circles me home to mine.

Christie Taylor Down Syndrome

For What They Do

“Wil, I miss you,” popped up in the chat box from Sarah Stommen. Virtual school started back up again a week from last Friday. Wil kicked off his virtual schedule full of steam, but by Thursday the task of getting him in front of the computer was a feat. Sarah saw the look on Wil’s face at the beginning of their virtual social studies class and knew he needed some encouragement.

When I pointed out Sarah’s message to Wil, he quickly turned his attention to the chat box, read the message for himself and a wide smile crossed his face. He then remembered he didn’t want to be there and turned his head to the side.

“Hey Wil,” Ms. Kastel, their social studies teacher said, “where is your dog?” Sarah was holding her dog, Maizie. Wil usually loves to share his pets along with his classmates, but he shook his head. I ran to pick up Oreo, as he was sleeping in the sun near us. I placed Oreo in Wil’s lap but he refused to share our cat with his classmates, too.  Ms. Kastel then asked Wil a few questions about subjects he enjoys discussing, like country music (she’s fostered a love for Johnny Cash in him). Ms. Kastel has a knack for pulling Wil out of his stuck feelings, but on this day, he was determined to stay stuck.

That same afternoon, Wil’s friend, Lila Harvey, sent Wil a “snap” through Elizabeth’s Snapchat (Elizabeth shares her Snapchat with Wil). Lila knew he’d been having a tough time with virtual school and wanted to cheer him up.  

When Wil was a baby, and his diagnosis fresh, I reached out to support groups and read books. I was in a battle against the “wouldn’t be’s.” How could I prevent Wil from falling behind? What did I need to do? I signed him up for all the therapies. Though these therapies were places of growth and strength for Wil, they became those places for me too. When Wil was only months old, his occupational  therapist laid him on a blanket and dangled a toy above him. The goal was for Wil to develop the strength the reach across the centerline of his body. I never knew such details existed. I never knew such heights of joy as I watched every inch of progress Wil made on his way to reaching that toy. Every new reach, every new grasp, every new step, every new word, every new milestone was celebrated. I found myself celebrating not because I believed Wil wouldn’t; I celebrated because he did.  

It’s easy to say these 14 years later that Wil deserves loving friends and teachers. And he does. Yet I remember well the “wouldn’t be’s.” I remember well the process of growth, strength and joy that shifted my focus in a new direction. So when I celebrate friends like Sarah and Lila and teachers like Ms. Kastel for who they are and what they do, it’s not because I believe that they wouldn’t. I celebrate them because they do. 

Christie Taylor Down Syndrome

Girl Time

Wil sat down on the bench. I sat next to him and watched a droplet of sweat slip down the side of his forehead. It was 88 degrees and he’d already been walking for 90 minutes. Katherine was to our left crouched in front of a hyena. She snapped a few close-up photos. The hyena was belly up, legs splayed, mouth open in what I swear was a smile, pink tongue hanging to the side, with the cool earth on his back and the hint of a breeze ruffling his coat; just like our pet Labrador on a hot summer day. Elizabeth and my dad were to our right watching an anteater splash himself in a pond. 

I knew there would be a point when Wil abruptly declared himself done with the zoo. I was impressed, though, that he’d made it this far. Earlier that morning, Wil jumped out of bed, stripped off his pajamas, took his still damp swimsuit off the dry rack, and pulled it on as fast as you can pull on a damp swimsuit. He jumped in my parent’s pool and played for 2 hours forgetting all about breakfast, until I reminded him it was time to eat and head to the zoo.

Wil and I sat together on the bench talking; I knew the only place he’d go from there was the exit door. After about 10 minutes, Katherine, Elizabeth and my dad joined us at the bench. Katherine and Elizabeth wanted to stay for the safari show which was in 2 hours. We came up with a plan: my dad would take Wil out to eat while Katherine, Elizabeth and I completed a tour of the zoo and watched the safari show. After that, we’d meet my dad and Wil in the parking lot and head back to my parent’s condo.

It’s a balance raising typically-developing children and a child with Down syndrome, but not an equal one. If my dad wasn’t at the zoo that day, then Katherine, Elizabeth and I would have left after we coaxed Wil up from the bench. Or, I would have sat with Wil while Katherine and Elizabeth continued the zoo tour on their own, because when Wil is ready to go, there is little chance of convincing him otherwise. Katherine and Elizabeth are deeply patient, compassionate and understanding individuals for that fact. They haven’t been outwardly taught to be that way; it’s part of their daily lives and ingrained in who they are. 

After my dad and Wil headed off to the car, Katherine, Elizabeth and I visited more animals, took pictures, browsed the gift shop, and watched the safari show — all on our own time, at our own pace, in our own way, just us girls. As we sat at a picnic table and sipped $4.00 lemonade under the shade of the Naples Zoo banyan tree, I took notice of the way the roots, stump and branches articulately wove together over time to create this magnificent tree. 

I sent a silent nod of reverence to the banyan tree, as we share the knowledge that balance is not always created in symmetry; that intertwining segments woven together over time form a foundation well-grounded. I looked my girls, and thought of sharing this, but they are teenagers and would have rolled their eyes. Instead I told them how proud I was of them, how thankful I was for this time together, and that one day they would also know their deep magnificence. 

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

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 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.