Christie Taylor Uncategorized

Sunday Live-Stream

I don’t listen to special needs podcasts.

It’s not that I don’t enjoy them, or learn from them, or feel a connection with them. I do. I have a few of my favorites saved in my library for quick access when I need extra help. But mostly, I enjoy the running podcast of my own life.

Like when Wil goes to Challenger baseball, I look forward to it just as much as he does. It’s as much of a supportive environment for him as it is for me.

There is both structure and freedom in the Challenger games: 3 innings, player placement in the outfield, a batting line-up, and everyone makes it to home plate. But beyond that, and sometimes within that, anything goes. It’s really the perfect parallel to raising a child with disabilities. The parents, coaches and players get it, because they live it. Every day.

Tim stepped up to bat, and Coach H. announced it was Tim’s birthday. Everyone cheered. Coach H. joked that his son, who has autism and scripts (repeats sayings), only told him 55 times that morning. After Tim hit the ball, Tim’s mom quietly told Coach H. that she’s not sure where his son heard it was Tim’s birthday; it’s really in January. But who couldn’t use an extra cheer?

Sandi was next up to bat. She hit the ball and ran to 1st base. But she didn’t stop there. Sandi ran on to join her friend on 2nd base to give him a hug. There Sandi stayed; two players on 2nd base and no one on 1st base.

James enjoys music; the same music, over and over. James’ dad’s cell phone is on a near constant repeat of animated show tunes in his pocket. But James’ dad instilled a rule: music while in the outfield, but no music while waiting to bat.

“I swear I can’t listen to that song one more time!” James’ dad said to me. James, in turn, scripted about the music the entire time he waited to bat. So, by the time James and his dad went back to the outfield, his dad was just as relieved as his son was to play music again!

I jokingly said to James’ dad, “No music on the pitching mound.” He replied, “Oh, there is going to be music on the pitching mound!”

Just before Challenger baseball, Wil, with his strong left-handed throw, tossed Elizabeth’s book into his pool. He wasn’t mad it her. Nothing precipitated his actions. He saw her book sitting on the back-porch table, and his pool was in perfect throwing distance.

He lost his iPad privileges, which means no Luke Bryan. So, he grabbed his Luke Bryan CDs, which I also said no to.

“DVD’s mom?” Wil asked.

“No,” I replied.

At the Challenger baseball game, I shared this incident with my friend, Eleanor. Her son also has Down syndrome and is Wil’s age. I knew she would understand, and sure enough, she laughed and said her son had committed similar acts with his sister’s possessions for no apparent reason. We shared other stories and how our sons always tell the truth, or remain silent, about such incidents. We’ve never heard either tell a lie. Then we watched her son crack an impressive grounder and take on the bases.

Entertainment, sports, connection, support, humor and education; no streaming required, all on a Sunday afternoon.

Christie Taylor Uncategorized

CREATING SPACE

“Mom, I saw Ashley in gym today!”

Wil did not share this fact after school. Nor at the dinner table.

Wil was lying on the couch, shortly before bedtime, watching a Netflix show with Elizabeth and me. He popped up in the middle of a scene— that had nothing to do with gym class, or long-time friends — and made his declaration.

When Wil was younger — and his friends, cousins and sisters were younger — the main goal was play. Though some kids ran and talked faster than Wil, the running and talking didn’t last long. They were all about the play, and that’s what they did.

But now, the play has transitioned to conversations. And these conversations move fast and take lots of tangents. And Wil, though he speaks quite well, simply can’t keep pace with most teenagers and adults when it comes to conversation. Thus activities in gym, and seeing long-time friends like Ashley, are highlights of Wil’s day.

I’ve recently noticed Wil’s increasing silence at large gatherings such as weddings and holiday dinners. Ironically, Wil’s conversational skills have increased, and yet, he still cannot keep up with the pace of group conversation. He joins in where he can; and for Wil, that is in laughter. Unless Wil is addressed or given the space to talk, he sits quietly, staring at his plate, until laughter spontaneously and contagiously catches everyone at the table, and he heartily joins in.

Fortunately most large events come with dancing and games, and this is where Wil knows exactly how to make space for himself. At my nephew’s wedding, he literally did just that. Wil created his own space on the dance floor, got down with his own moves, and his energy was so contagious that no other dancer could resist joining him. He was again at play, everyone around him was about the play, and that’s exactly what they did.

When space isn’t created for Wil, and he is not able to create space for himself, it is when the night grows quiet that he thinks on his day and processes events. It is his time to filter through images without all the tangents and interruptions. And though some of his declarations may seem out of the blue to us, he is creating that space for himself. And as his mom, I can’t help but cheer when he decides to take the floor!

Christie Taylor Uncategorized

A Moment in Time: Surprise gifts

Wil and I went to pick up pizza in town. As we exited the pizzeria, we saw Will D., Wil’s friend from school.

We enjoyed a quick chat, then as Wil and I headed back to our car, Wil turned around and called out to Will D., “See you tomorrow!”

I’ve never heard my Wil say that when meeting school friends in town. And yet, there it was, thrown out there just like that.

When the common never is, it’s like your life is dotted with little surprise gifts. 🎁

Christie Taylor Uncategorized

Lifting the Mask

“What do you want to be for Halloween, Wil?”

“A meeeeaaaan pumpkin, grrrr!” Wil lifted his arms up and curled his hands into claws. 

Wil and I searched the Web for a “mean pumpkin” mask. We found the perfect fit! A jagged-toothed jack-o’- lantern mask that lit up. Next was the shirt. We found a black long-sleeved t-shirt decaled with two triangular orange-flamed eyes and an evil orange-flamed smile. 

Wil’s resource room class was invited to wear their Halloween costumes to school last Thursday (as there was no school on Friday). Wil made a mission of scaring his teachers — I heard he made Ms. Kastel jump! After every scare, he cracked himself up (even the scariest jack-o’-lantern is a sweet pumpkin underneath). 

When Wil was diagnosed with Down syndrome shortly after his birth, I prayed there was some mistake. My heart knew, but my brain fought my heart every step of the way. As time went on I realized that it wasn’t Down syndrome I was scared of. It was my vague understanding of what Down syndrome meant. Now that I know my big-loving, super awesome hugging, silly, joke-making, forever singing, strong-willed, Luke Bryan’s biggest fan teenage guy, the mask of fear has long been lifted. I’m just another mom who loves her son. 

I begin work as a paraeducator with Saline Middle School this week (and reduced my fitness coaching schedule to 2 days a week). Before Wil was born, I would not have considered a career as a paraeducator. That was reserved for “special people.” I had a deep admiration for those who worked in special education, and still do, but at the time I only had a vague understanding. Raising Wil, I have seen first-hand that there are most certainly people born with a natural affinity to work in this field. But I also discovered that life experiences can thus equip us. Though not born with this natural ability, life experience has grown in me an in-born desire to contribute in ways I never previously considered. 

I can’t wait to get to know the middle school students that I will be working with. To dive below the surface and understand who they are, what they love to do and what really ticks them off; all that tween and teenage stuff. I also want to know who they want to become and help them to become that. That’s what I now find to be special.

This will be my last weekly article. With my new position as a paraeducator, in addition to my current job coaching, I will no longer have the time to create a quality article on a weekly basis. The Manchester Mirror (our community paper who publishes Wil’s stories) has graciously left the door open if, upon life settling into this new rhythm, I should start writing weekly again.  A very heartfelt thanks to Manchester Mirror in sharing our community’s news and stories; they truly bring our community together.

Thank you for sharing in Wil’s stories. I hope in some way, I’ve lifted the mask of vague understanding and uncovered what is truly special. Until next time, Wil sends his biggest hug (and mean pumpkin scare, grrrr!). 

Christie Taylor Uncategorized

Drum Roll Please, Common Ground at Play!

When Wil entered 4th grade, the gap in his abilities relative to his typically-developing peers took a large leap. Wil’s classmates talked faster than he did and played at a higher intensity. Even so, Wil and his friends, whom he had been in school with since kindergarten, formed a strong bond over the years. Whenever I witnessed Wil and his friends on the playground together, no one was left out. He and his friends created or altered games so they could all join in together. There was no shortage of singing, dancing and laughing.

Wil played recreational soccer with his peers through 3rd grade, but it was clear that would be his last year. Though his coach and teammates fully included and encouraged him, the faster pace simply wasn’t for him. The next season Wil went to  TOPSoccer, designed for people with disabilities. He played with TOPSoccer for the next 4 years. 

Now in 9th grade, Wil is happily settled into the familiar schedule of school with his friends. The friends are just as close as ever, but the reality is they are all teenagers now. Outside of school, Wil’s friends are balancing rigorous homework with multiple extracurricular activities, as are his sisters. Play time together is caught in brief snippets of time. 

Isolation is a reality for many people with disabilities as they grow older. The gap expands and the opportunities shrink. As parents, siblings and friends of our loved ones with disabilities, we constantly seek and create opportunities for common ground. It is in the creation of new pathways, that our bonds grow even stronger. 

When Wil was younger, he had a small drum set. Though Wil is a joyous bundle of energy most of the time, at times he would get overwhelmed with friends and run off. During one such time, Wil’s friend Lila spied his drum set, and they played together on that for hours. From then on, if Wil became overwhelmed when friends were over, they’d all circle back to the drum set. 

I just put up a trampoline for Wil last week. My intention was for the trampoline to be his teenage version of the drum set (but quieter). It’s both a fun activity for Wil to enjoy on his own, as well as with his friends and family. 

Last night Elizabeth and Wil, now equal in height, chased each other around the trampoline. Laughing, jumping and bouncing, they circled the perimeter over and over. 

Over the course of these near 15 years of Wil’s life, I’ve uncovered a few core truths:

  • Connection is not guaranteed with full inclusion, but strong bonds are rarely formed without it. 
  • Preparation alleviates fear of the unknown, but the unknown will present itself without it.
  • Creation is necessary to move forward, but circling back also leads us where we want to go.  
  • And no matter how many hours you’ve heard a drum roll, when common ground is at play, you’ll want to shout “drum roll, please!” 
Christie Taylor Uncategorized

Happy Endings

Wil leaned his head against the passenger-side window. His brand-new and carefully-chosen checkered shirt, maroon tie and navy pants were dry, but his spirits were dampened. My dad was parked next to us in the United Methodist Church lot, which was just a flight of stairs above the football field. 

“I know it’s raining, but do you want to roll down the window and talk to Grandpa?” I asked. 

Wil didn’t answer me, but he lifted his head and pressed the window button down. My dad asked Wil multiple questions to elevate his spirits. (Thank goodness for amazing grandparents!)

The MHS homecoming game had been delayed by a lightning strike. Then by another strike. A downpour of rain followed. We were now nearly into an hour of delay. During the school day, Wil had practiced walking across the football field with his paraprofessional, Kristi Campbell. Wil and I talked about his being on the homecoming court all week, so he was well-prepared to cross the field with Memphis, who also represented the freshman class. I anticipated a chance of rain, and knew Wil wouldn’t want to cover up his new clothes with just anything, so we bought a new raincoat. The largest obstacle I foresaw was the band. Wil doesn’t like loud noises, and he might refuse to move. I assured Wil that he’d be crossing the field after the band played, and I’d have his ear protectors on hand. What I didn’t anticipate was a lightning delay. 

My cell phone rang. It was Kristi Campbell. She and Memphis were headed up to the parking lot to meet us. Kristi suggested taking pictures under the front overhang of the church. 

Wil’s eyes widened at the sight of Memphis. She was gorgeous in a full-length, sparkling seafoam-colored dress. Wil stood tall and proud linking arms with Memphis for pictures. Though they weren’t on the football field as planned, this was definitely a moment for Wil. (As Kristi knew it would be. Thank goodness for amazing paraprofessionals!)

Multiple cars exited the parking lot as the delay continued. I knew Wil wouldn’t want to go home. Fortunately, his sister Katherine was working as a server at a local restaurant.  I suggested we visit Katherine and order some food.

At the restaurant, Wil asked me about the homecoming dance. I sadly didn’t have an answer for him. Then, almost as if on cue, my cell phone rang. It was Kristi Campbell. The game was cancelled but the homecoming court would now be at 9:00pm followed by the dance. It was 8:58pm. Our food hadn’t arrived, so I asked Katherine to change our order to a carry-out that we’d pick up later.

We met Memphis back in the parking lot, as her family had quickly returned too. The rain, and the band, had taken leave, so Wil walked onto the football field without hesitation (and without his raincoat). He smiled for every picture and soaked it all in.  

Wil’s friends, Sarah and Seeger, ran up to congratulate him. They asked Wil if he was going to the dance. The dance would be a major independent experience for Wil. When Wil gets tired, there is no turning back. Not everyone can read his cues, and by the time they do, he has shut down. But Wil’s friends know him well. I asked Sarah and Seeger if they could text me when Wil grew tired and I’d be right up at the school to pick him up. They accepted that responsibility without hesitation. Wil made it through nearly the entire dance with his friends. After the dance, Wil’s friend Ashley texted me videos of Wil dancing the night away. (Thank goodness for amazing friendships and happy endings!)

Christie Taylor Uncategorized

Preparing for Homecoming Court!

Wil was elected to homecoming court by his freshman peers at Manchester Junior/Senior High School. As you can imagine, my heart swelled — for Wil and for his friends, and for any positive ripple effect beyond the borders of their school. Wil’s friends didn’t vote for him to make a statement. They voted for Wil because he is their friend. And yet their example makes a statement.

When Wil and I went shopping for his homecoming outfit on Thursday night, Wil made very thoughtful choices. He sought out a maroon tie as Manchester’s school colors are maroon and gold. He then found a checkered shirt to match his tie, though I’m still unsure if the checkers are maroon and black, or maroon and navy blue. It was of no consequence, however, as Wil was determined to find navy blue slacks. (Navy blue is his dad’s favorite color, and these were grown-up slacks, so I followed the logic). As Wil typically wears casual pants that come in S-M-L sizes, I was shocked to discover Wil has grown into a size 32X30! 

Each piece of Wil’s outfit, once tried on, deserved a dance in the mirror. Wil didn’t want to use the dressing room so I helped him button the checkered shirt over his t-shirt, then put on his tie. He opened his arms wide in front of a mirror, commented on how good he looked, and spun around to get the full 180-degree view. I helped him pull the navy blue slacks up over his shorts. He wiggled his hips with moves that would make Elvis stop and take notes. He then put on his new shoes and kicked out what looked like an Irish jig. 

Satisfied with his selection, Wil removed the new clothing, stacked it up to carry it, but chose to wear the new shoes home. We made our way to the cashier, though it took us some time. Wil stopped for a high-kicking dance in his new shoes at each mirror along the way; his new wears draped over his left arm.

Wil never meets a stranger at the store. And no wonder. Who wouldn’t be drawn to the refreshing energy of a teenager that so quickly and freely shares their joy? By the smiles on our fellow-shoppers’ faces, I have no doubt a positive ripple effect extended beyond the borders of the store.

Wil reminds us how amazing the simple pleasures of life really are, even if we are all grown up! Wil’s not living his life in an effort to make a statement. And yet his way of life does exactly that. 

By the time you read this he will have walked across the court. So that will have to be a story for next Monday.

In the meantime, whenever you pass a mirror, remember to kick up your heels and do a quick dance along the way for Wil and his friends. Every positive ripple counts.

Christie Taylor Uncategorized

Growing Together

Families and friends gathered for the annual Down Syndrome Support Team Buddy Walk the last Sunday of September. It is traditionally held on that date— though here and there over the years the Buddy Walk has jumped up or back a week. The Buddy Walk takes place on a one mile loop in Gallup Park, then walkers return for Pizza House pizza, music, a silent auction, raffles and games. Last year due to the pandemic we cancelled the walk. It felt good to be back, even with a few changes. 

With the strain of the pandemic on businesses we chose not to solicit for the silent auction. However, many beautifully generous raffle baskets were donated and we held a 50/50 raffle. The popcorn machine was going and the band, Know Obstacles, was playing. Leonardo, the lead singer, always packs extra instruments for the kids to play and invites them to jump up on the stage. We chose not to have open pizza due to the pandemic (though we sure missed our Pizza House pizza!) and instead offered pre-packaged snacks that the kids loved.

The weather was an incredible blessing. The skies were a high, bright blue and the temperatures hovered in the low 70s. A light breeze offered just the right refreshment. 

Wil’s first Buddy Walk was when he was 7 months old. At the time, the University of Michigan gymnastics team volunteered at the Buddy Walk. I have a photo of all the gymnasts gathered together holding baby Wil. It was 90 degrees that day. 

The next year the Herron family joined us and have nearly every year since. Theresa Herron was Wil’s speech therapist at the time. I met her daughters, Ivy and Amelia, and they began to babysit Wil. Each year at the Buddy Walk, it became tradition for Wil to take turns getting piggy-back rides along the walk with Theresa, her husband Jordan, Ivy, Amelia and their brother Elijah.

Beckie Brewis, Wil’s Early On coordinator joined us each year, too, as did the Helquists, Desbroughs and Gregorys; friends we made through a program led by Beckie called First Steps. When Wil entered preschool then elementary school, he met Sarah Stommen, Ashley Bobo and Lila Harvey. Their families have joined us nearly each year since. As Wil grew, the love from our Manchester community grew too, and many more families have joined and supported the Buddy Walk. Manchester’s very own SteeleGrafix made the Buddy Walk t-shirts this year! 

The Buddy Walk love has now extended to the friends I have made in my workplace, Orangetheory Fitness. It always awes me how love can spread. 

This being our family’s 15th Buddy Walk (we had our own personal Buddy Walk with friends last year in Manchester), we have walked through rain, sunshine and unprecedented heat. We now walk through unprecedented changes in our lives. However, the spirit of the Buddy Walk remains constant – the love and support of individuals with Down syndrome. 

Christie Taylor Uncategorized

Waves

Wil and I went to see Luke Bryan on his Farm Tour at the Kubiak Family Farm in Fowlerville, MI. We parked in a field, with 20,000 other fans, just over a mile from the stage. I grabbed our bag that Wil stuffed with 2 Luke Bryan pillows, 4 Luke Bryan hats and 4 Luke Bryan t-shirts (Wil wore the Farm Tour t-shirt our friend Jen, who secured us tickets, had gifted him). I squeezed in 2 light jackets and a blanket. I took Wil’s hand and we made our trek to the stage.

When Wil caught sight of the lights on the stage he stopped in his tracks. He let out a breathless, “Mom look!” Though Wil watches Luke Bryan concerts on his iPad daily, the real life experience took his breath away (and seeing through Wil’s eyes, it took mine too).

Wil handled the mile long trek like a champ. Without breaking stride, he put his ear protectors on as the music of the opening band grew louder. When we met the ticket scanner, he came to a complete stop. A long line of fans stood behind us but he refused to move. He knew a threshold was being crossed. I braced myself behind his body, wrapped my arms around his torso, and forced him forward. 

Wil suddenly needed the bathroom excruciatingly. We walked to a long row of porta-potties. Each had an extensive line. I quickly scanned the row for a handicapped porta-potty then walked Wil to the front of the line. I explained our situation. Wil crouched down to the ground and clamped his hands over his ear protectors. 

“What, does he have autism?” The woman in front of the line asked. 

“He has Down syndrome. He is in a lot of distress. And this is the handicapped bathroom.”  I don’t think that authorized me to take cuts but I was desperate. A woman behind us in line said we could take her spot. She then asked to hold my bag. I thanked her profusely. The couple in front of her then said Wil could take their spot. With this overflow of kindness, the woman in the front of the line relented. When the porta-potty door opened, Wil refused to go in! I again braced myself against him and pushed him into the stall. 

When we got past that, we found a space in the field and spread our blanket. Wil relaxed. I stacked his 2 pillows and he sat down on them. When Wil recognized a song the opening band played, he jumped up, danced and sang. 

When Luke hit the stage, Wil never sat down. Wil kept up word-for-word with Luke, rocked his body and pumped his fist. Multiple fans surrounding us walked over to comment on how much they enjoyed Wil’s energy. 

When Luke played “Waves,” it seemed not as well-known as crowd grew perceptively quieter but Wil didn’t miss a beat. How fitting, I thought. Wil knows better than most how waves work. The crest cannot be reached without friction. 

When Wil was ready to leave, he sang with Luke as we walked back to our car; the concert ended before we reached it. We began our drive home and Wil talked excitedly about the concert, then fell silent. A light snore escaped him.  

“Keep coming in waves keep on coming in waves keep coming in waves…”

Christie Taylor Uncategorized

From Monday to Friday in 60 Minutes

This week’s story is an excerpt from “Stories of Wil: Puberty Part 1” (publ. July 2020)…

When I woke Wil up, he was very sluggish. 

“Hey, buddy, time to wake up,” I said. I sat on the edge of his bed and tickled him lightly under his chin. 

“Hmmph!” Wil turned his face into his pillow and commenced fake snoring. 

“Oh Wil, I almost forgot. It’s your favorite day of the week today. It’s Monday. Happy Monday, Wil!” Wil turned his head from his pillow, opened his clenched eyes, and looked up at me. 

“Ugh, Mom. It’s Friday.”


“Hmmm, I’m pretty sure it’s Monday today. Let’s go Monday!” “Mom,” he bolted upright in bed, “it’s Friday.” 

“Ok, I guess it’s Friday. Ho-hum. How boring. The end of a week of school. I think the beginning is much more fun. Too bad it’s not Monday. Time to get dressed now.” 

“Oh, Moooooom. Hugs now.” 

“Yes, we can’t forget our hugs,” I said, and hugged him. “Ok, let’s get up and dressed and ready for our Monday.” 

“Oh, Moooooom. Ok, I’ll get dressed. Go Friday!” 

Later that morning as I was driving all three kids to school, Elizabeth said, “So Wil, what’s for lunch on Mondays?” 

“It’s FRIDAY!” Wil replied. 

“Oh, it is? Phew, I thought it was Monday,” Elizabeth said. Then as they all exited the car at school, Elizabeth said to me, “Have a great Monday, Mom!” 

“You too, Elizabeth!” 

“Sheesh, you guys. It’s FRIDAY! Let’s go Friday!” Wil laughed and took off running to the school. 

A sluggish start can easily extend itself into a very challenging day at school for Wil. Silliness is the kryptonite to his sluggishness—it doesn’t always work, but it’s always worth a try (and the bonus is the silly start added fun for all of us). Let’s go Friday!