Christie Taylor Uncategorized

Perpetual Student

“On page 65 and 66, you said you used creativity and silliness to encourage Wil to do things. How did you think of using silliness?”

“From Wil,” I answered. “He’s the master of silly. He uses it all the time. It’s an incredible motivational tool…for me too!” 

I was the guest author of a book club meeting. The book being discussed was, “Stories of Wil: Puberty Part 1.” Upon answering the question, I realized something I had known but never consciously registered — almost everything I do to motivate Wil was originated by him. 

As I grew into adulthood, much of my silliness faded. It was revived by raising Wil. He adds silliness to nearly everything he does. And so I learned to do the same. Just last week, Wil refused to brush his teeth. I knew if I pressed the issue he would dig his heels in deeper. The night before, Elizabeth showed our family a salsa dance she learned in Spanish class. So I grabbed Wil’s hands and said, “Let’s salsa!” We salsa danced from the living room to the bathroom while I sang, “Let’s go brush, brush your teeth,” to the tune of “La Cucaracha.” The song and dance flipped a challenging morning into a joyful one.

“On page 92,” a reader from the book club stated to me, “you said that ‘I may be missing a lot of clues that someone from the outside looking in could see plainly.’ I find that astounding, that when you were struggling like you were with Wil’s behaviors, that you could step back like that and have perspective.” 

This process of stepping back, too, I learned from raising Wil. Wil’s behaviors, at times, can be challenging and difficult to identify the underlying triggers. When Wil was born, I felt the most stuck I ever have in my life. I knew I needed to take a step forward, but I didn’t even know which way forward was. So I reached out to people who were already living this life, and though the road stretched out long before me, I was guided by those who had a much wider perspective than I did at the time.

On the occasion the reader referred to, Wil was knee-deep in puberty. I was navigating new behaviors I had never seen from him before. Neither his teachers nor I knew what to do. I was receiving almost daily calls from the school. After one such phone call, I pulled into the parking lot at work and broke into tears. I knew Wil was hurting, I was hurting and his teachers were hurting. I was in that stuck place again and didn’t know a way out. I had to go into work so I took a series of deep breaths to calm myself down. I reminded myself there was a solution, I just didn’t see it yet. With each deep breath, I repeated to myself, “there is a solution, there is a solution.” A name popped in my head. Julie Feldkamp. She has been Wil’s teacher consultant since preschool. I called her quickly and she soothed my nerves immediately. She said I was not alone, she had worked with many students with varying behaviors, and we would get through this. We still had a long road ahead of us, but her words pulled me out of the abyss and placed us on the road of progress. 

At the end of the book club, the readers shared how much they learned through Wil’s stories. “As I have, too,” I said.

I may be the author, but Wil is the teacher. 

Christie Taylor Uncategorized

Unfiltered

This morning Wil sat on his bed. He wouldn’t get dressed. The frustration rose in me. The clock doesn’t stop for him. School would start ready or not. Inside I have to give my heart a deep breath. Why do the simplest things have to take such patience? Every.single.day. I ask, in my calmest voice, if he needs help. No. I say ok, and walk away. I don’t know what he’ll do. I know I can’t push it or he’ll push back. The tension rises in me. I exhale it again.

A 14-year streak of sitting on his bed, and he won’t move, and the clock is ticking, and the only way to get him to move is to be your calm damnedest self when you just want to scream for him to please just do the simplest thing in the world. Please just put your pants on.Then you hear him move. And it’s like the best thing in the world. The absolute best. And he emerges from his room victorious, with his long-sleeved T-shirt with Luke Bryan on the front, and yes, his pants on. He raises his arms, “Look Mom!”

It’s an event so much smaller than those filtered close-up selfies proclaiming “gratitude!” and “seize the day!” I mean, my selfie would be me in my pjs, holding a cup of coffee while playing air guitar in response to Wil’s clothing choice, because we just freaking seized the day.

Yes, so much smaller than those filtered, designed proclamations. And yet, so much bigger.

Christie Taylor Down Syndrome, Uncategorized

With Chocolate chips on top

“Well, you have enough challenges raising Wil.”

I write about the challenges raising Wil, so it’s expected to frequently hear that, and I’m thankful. I used to hear, “well, he’ll always be happy.” To wrap Wil into one emotion both undermines who he is as a person, and the value of what it means to be his mother. 

There are few constants raising Wil; I live in a guessing game of interpreting his thoughts and ambitions. He very well knows, but he doesn’t always have the words to communicate his thought processes. So I am left hypothesizing, considering, deducing, reaching in and reaching out. One common saying in our Down Syndrome Support Team is: “What worked today may not work tomorrow!” To place Wil in a happy corner is laughably simplistic. He is fully, frustratingly, beautifully, imaginatively, ubiquitously challenging. Aren’t we all in our own multi-dimensional ways? 

I am in daily awe, however, of one constant in Wil’s life. That is how open and loving he lives it. His friends find a level of peace with him. He will never judge them, and that provides an internally settling feeling few other emotions can match. Wil will never grow jaded. Wil remembers slights and hurts, but he doesn’t hold on to them. He travels light. I’m ever the student when it comes to Wil.

Last Thursday night, I sat on the edge of Wil’s bed as I tucked him in and we had a conversation. His school was going virtual again and he’d just had his last day of in-person school for what we hope only lasts 2 weeks. He was feeling sad about not seeing his friends and teachers so we talked it out. Then suddenly he changed the subject. “Mom, pancakes.”

“You want pancakes for breakfast?” 

“No, made pancakes.”

“Oh, you made pancakes in school today?”

“Yes, with Kennedy.” Rachel Kennedy is Wil’s resource room teacher. Sometimes he refers to his teachers by their last names: Campbell, Kastel, Kennedy. 

Then he smiled and held up two fingers. “I made two. With chocolate chips.” 

My heart leapt with joy. That smile of his was for more than just pancakes. It was a smile of connection. A connection made through his own self-initiated words that invited me into his world.  

In Wil’s early school years, there were few words. He would get frustrated, the tears streamed, and he couldn’t tell me why. I could only ask questions, hoping I’d strike something with some accuracy that he would nod to. At times he would nod for the sake of nodding. He desperately wanted to say yes to something. To connect. So I would hug him and hide my tears, aching for the day he could express his own thoughts. You don’t know the value of a word until you know what it’s like to wait to hear just one, please just one word, that tells me what you are thinking.

I used to believe I knew what optimism meant, but I confused it with positivity. Positivity is rather one-dimensional, as is slapping someone, or something, with a happy label without care to delve deeper. Optimism lengthens with patience. Optimism holds on tight with faith. Optimism searches, reaches, climbs, knowing there is an answer, it’s simply not ready to appear yet. Optimism feels sadness but never stops believing. Optimism rejoices as optimism knows it grows through the challenges.

Yes, I have enough challenges raising Wil; as is the reason I brim with optimism. He’s grown my heart to believe with every part of my being…with chocolate chips on top.

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.

Christie Taylor Down Syndrome, Uncategorized

Extra-Awesome

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. 

Christie Taylor Uncategorized

Flipping the Coin

“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.

Christie Taylor Uncategorized

In Kindness

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
Christie Taylor Uncategorized

Leveling Up

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.