Christie Taylor Uncategorized

Once Upon a Hat

On Friday morning, Wil sat on his bedroom floor rifling through his bin of hats. He couldn’t decide which one.

“Well, no hat then!” Wil announced to himself. 

“Do you need some help, Wil?” I asked.

“No.” I sat down next to him and laid his hats on the floor. He turned them all down.  We had to leave for school in 10 minutes. 

Wil had a Manchester shirt on so my best guess was he wanted a Manchester hat too. I presented his Manchester hats to him but he turned them all down. I convinced him to get off the floor, even without a hat, which was a good sign. 

A few months ago when Wil couldn’t decide on a hat, he stayed on the floor. I told him I was taking his sisters to school so they wouldn’t be late and I’d be back to get him. When I returned, he was seated on the porch step with a hat and backpack on. I was proud of him for turning his day around. 

On this Friday morning, however, when Wil stood up he fled the house without a hat or backpack. Katherine dashed after him. I grabbed Wil’s Manchester hats, his backpack, and flew out the door behind them.

I found Katherine standing in the dog kennel which is attached to the side of our garage. Wil was attempting to climb through the dog door which would have been hilarious to all of us, if we hadn’t been in a time crunch. 

“Silly Wil,” I said. “Woody is going to be jealous of you using his door. Come on, you don’t want to be late to see Ms. Campbell, do you?”

“Kristi Campbell!” Wil jumped out of the dog door and exited the kennel as he said his paraprofessional’s name. Then he stood unmoving in the driveway ­— two steps forward and one un-moving step is still a step forward in our book.

I walked behind him, put my hands on his waist and said, “Chugga-chugga choo-choo!” As I pushed him forward, he leaned back in resistance, yet kept putting one foot in front of the other. When we reached the car, Katherine opened his door but he stood firm by it. 

“All aboard,” I said. I bent his head down and kind of hoisted him into the car. He laid on his stomach with his legs hanging out. At this point his resistance was becoming a game. I was in part thankful for that, as I knew he was pulling out of his funk. But I was also running out of patience as he was in jeopardy of making his sisters late for school, which wasn’t fair to them. 

Elizabeth was in the back seat with Wil and talked him into sitting up straight and putting his backpack and seatbelt on. 

“Hey, Wil,” Elizabeth said looking at the Manchester hats I threw in the car, “that Manchester visor is mine.”

“No, my visor,” Wil said. They bantered back and forth. I knew what Elizabeth was doing. Sure enough, Wil chose the Manchester visor.

I reached my arm over the seat and splayed my hand. “Give me a turkey, Wil. You turned it around! Now you are going to have a great day.” He fist bumped my open palm. “And how about those sisters of yours? They are awesome.”

“They are bratties.” Wil said and laughed.

“No, you’re bratty,” Elizabeth said and playfully nudged Wil. (Typical sibling banter is as refreshing as it gets when life isn’t feeling so typical.)

By some miracle, we all made it to the school with 90 seconds to spare and in good spirits.

Sometimes it’s the simplest things that throw us off track, the simplest things that place us back on track, and the simplest things that we appreciate most. 

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 Down Syndrome

Simply Powerful

Kristi, Wil’s paraprofessional, sent me this photo of Wil cooking at school with his Connect mentor, Victoria. It was Cinco de Mayo and they were making tacos. Kristi told me he ended up eating 3! 

It’s awe-striking to me, still, even though Wil is a teenager, how powerful the simplest joys with him are. I mean, they were making tacos on Cinco de Mayo. How simple is that? But look at their faces. I think of the support he is encompassed with. Simple never is with Wil. 

When Wil was born, I knew so little about Down syndrome. I didn’t know how powerful the simplest actions could be. 

Though there was a high learning curve in early therapies and doctor’s appointments with Wil, my deepest learning came from knowing him. Knowing Wil’s smile. Knowing Wil’s hugs. Knowing Wil’s first words. Knowing a community that embraced him. 

When I reached out to Victoria, she shared, “it’s kids like him who have really made me want to go into the profession. He is so caring.”  

Victoria is way ahead of where I was. Her knowing will change lives. Not only for her chosen profession in the future, but also right now. The way she interacts with Wil, simply by being who she is, sets an example that shatters stereotypes and alleviates fears. It is not scary to know Wil. It is not hard to know Wil. In fact, it’s really darn cool to know Wil. 

Whenever I hear words like Victoria’s, I’m always drawn to thoughts of my mom’s close friend, Martha. Martha has three sons. Her oldest, Paul, is my age and has Down syndrome. Paul did not have friends like Victoria. In fact, for Paul, general classroom opportunities were scarce to non-existent. Early therapy was not available or encouraged. And a Connect mentor program would have been a far off dream. Martha navigated this life with a tiny fraction of the awareness and advocacy Wil is surrounded with. 

Wil and Victoria’s experiences are not just for Wil and Victoria. They are for the families who navigated this life before us, and for the families Wil and Victoria will open doors for. The power of advocacy is not always found in picket lines. Advocacy is also spread by our daily actions in simple, yet powerful, ways. Simple never is with Wil.

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

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, 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 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.