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

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! 

Christie Taylor Uncategorized

Simpler Times

Wil has a karaoke machine in the basement. He flips the “on” switch, dials up the flashing lights, but the microphone remains in its clip. He cannot be tethered by such things.

Every single day, be it a weekend morning or a weekday after school, Wil inserts a Luke Bryan CD in the karaoke machine or cranks up country songs directly from his iPad — the use of the iPad does not exclude the need for karaoke lights. (Currently his favorite starter song is “Buy Dirt,” by Jordan Davis featuring Luke Bryan.) He’ll then grab the handrail of his mini-trampoline and drag it across the carpet. He lines it up directly in front of the karaoke machine and hits play. He then gets to jumping and singing full blast. This can go on for hours. 

If Wil comes across a song he likes but doesn’t know all the lyrics to, he’ll replay a verse over and over until he memorizes it. Then he’ll do the same with the next verse. And the next. Wil knows the full lyrics to over 100 country songs. Without Google. 

When he’s tired, he’ll say, “Phew!” Then stomp up the stairs and walk out to the back porch. He’ll take a seat on the slider and rock back and forth. A breeze will brush the side of his cheek. He’ll tilt his head up and say, “Ahhhh.” He may notice a looping bumble bee, the shrill of a hawk, or grazing deer in our back field. These are not new experiences where we live, but Wil expresses his excitement each time as if they were. “Listen, Mom.” “Mom, look!” “Deer, Mom!”  

Wil is frequently the last one at the dinner table. Katherine and Elizabeth typically set up their homework on the kitchen island. I’ll linger at the table with Wil or clean up in the kitchen. Last night after dinner, as I washed dishes, Elizabeth stayed at the table and talked to me about her AP Literature class. 

“We are reading ‘The Catcher in the Rye,’” Elizabeth said. “Do you want me to read you a chapter? You spent so many years reading to us. Now I’ll read to you, Mom.” 

I sat down next to Elizabeth as she read to me, and Wil finished his dinner. I was transported back to simpler times. 

When Wil was born I worried on all the challenges. The learning curve was high. Like Wil, I replayed new verses over and over again to absorb them. In that I also absorbed something you can’t know through Google. The soul within the verse. 

It is the challenges that shed a light on the soul of the simplicities. It’s like Wil flipped the “on” switch in my life, and the lights have never stopped flashing no matter what medium they illuminate. I’m reminded of the aerodynamic beauty of a bumblebee loop; how the shrill of a hawk cuts through the blue sky; I’m newly refreshed by a breeze across my cheek. Now I’m brought back to the joy of being read to — by my own daughter. I could listen for hours.

Christie Taylor Uncategorized

Complex Simplicities

She usually wears shoes to golf but in this heat, my guess is she wouldn’t leave the house without her flip-flops. She slipped off her flip-flops at the driving range and sliced the golf ball just as expertly as she did with shoes on.

She sat down to brush the dirt off her feet. Her bare feet were lifted to nearly chin level. Hypotonia (low muscle tone) allows our kids with Down syndrome great flexibility. The loose dirt fell off, but a dark stain remained on her heel. She wanted that to come off too, but wasn’t able to brush it off. She knows me as Wil’s mom, so I bent down and asked if I could help. She nodded. I poured water from my water bottle across her heel then scrubbed with my hand. She tilted her foot inward to get a better look, but never let her feet fall below chin-level. The dark stain had faded but she shook her head. Not good enough.

I poured more water on her heel and scrubbed again. She tilted her foot inward, took another look and shook her head. Another parent ran up to the golf course’s restaurant to get some napkins. But even those didn’t remove the dirt to her satisfaction. Her dad soon walked over, as he was volunteering on the putting green. By his expression I could tell he knew what was happening. He bent down and had a quiet conversation with her. She finally let her feet fall down to the ground then slid on her flip-flops. Victory! She took her dad’s hand, I waved good-bye and they headed toward the parking lot.  

The next day was equally as hot, but the evening had slightly cooled, so I sat on the back porch and Wil got his recumbent bike out. He expertly maneuvered the handles to make perfect cuts and turns across the grass. Sweat dripped down the side of his face but I don’t think he even noticed. Wil turned his head toward me and smiled every few seconds to be sure I was watching. 

When Wil was a baby he wore tiny lycra biker shorts with the inseam sown together. Otherwise his legs would flop out as Wil also has hypotonia. The idea of these shorts was to strengthen his hips and train his body to keep his legs in. Every time I watch Wil ride his bike, I’m brought back to those tiny biker shorts.  

Wil clomps heavily when he walks, and has a slight side-to-side swagger. Wil had speech therapy with his friend Teddy this summer. Teddy’s mom and I would always share a smile as Teddy and Wil clomp, clomp, clomped off to the classroom together. 

When Wil was born, I was told by parents who were ahead of me on this journey: “It may be hard to see now, but your life will be so much fuller with Wil in it.” 

That remained stuck in my head because it both struck a chord, and yet felt too abstract. I wanted more details. I wanted to know how my life would be fuller. What did that mean exactly? 

But how do you share with a new mom how endearing a flip-flop stand-off is when she is navigating the complexity of acceptance? How do you explain the depth of joy in watching your child ride his bike when she is navigating doctor appointments and therapies? How do you share the feeling of a deep-down connection in another mom’s smile when she is bewildered by a new journey full of new, unknown people. 

My answer to that now is no more detailed than the response I received over 14 years ago. I had to first embrace the complexities before I fully received the gifts of the simplicities.

Christie Taylor Uncategorized

True-Blue Happiness

As I waited in line at the pharmacy for Wil’s thyroid meds, I glanced at the magazine covers displayed below the check-out counter. A woman on one shiny cover sat cross-legged in a peaceful, meditative pose; mindfulness is the way to happiness. Another shiny cover had a full-page close up of a spotless country kitchen; simplifying your home is the way to happiness. Another shiny cover — this one in black-and-white – pictured a shirtless male weight-lifter; a sculpted body is a sure-fire way that happiness will find you.

Though nearly every magazine cover touted a way to happiness, I didn’t see a single one with a denim visor. 

At Wil’s Special Olympics golf last Thursday night, the golfers split into three groups: one at the driving range, one at the putting green and one chipping near the sand trap. Wil and I were at the driving range. As each group made the rotation, we crossed paths with one of Wil’s new friends. She is in her early 20s and also has Down syndrome. I admired her outfit and told her so. She wore a denim visor, and when I complimented her on it she said that a bus driver had given it to her. She then launched into the story behind it. 

I hung on her every word. Her words easily melded from one into the other. There were no pauses; there was no stuttering. It was a good story, and all the better that I could enjoy hearing it from her own perspective.  

Wil speaks in paragraphs, but not yet in stories. If you compliment Wil on his hat, he’s sure to say thank you. He may add that it’s from his grandpa, or his uncle, but that would be the extent of the detail. He has a lot of words to share, but tends to stutter in getting them all out. He’s working on remembering to take deep breaths to slow down his words.  

Every advancement in communication Wil makes, no matter how long it takes, is a thrill. Even the simplest requests that he’s been making for years, like what he wants for lunch, still gives me a smile. When you wait to hear someone’s very own thoughts, and their very own perceptions, it’s nearly impossible to take one word for granted; and I never want to.

A friend of mine in our golf group has a son in his mid-20s with Down syndrome. Her son has had a very recent shift in behavior. Though she has a few guesses as to why, she’s not sure. He’s not highly verbal, so she listens intently to anything he shares with her, be it physical, verbal or situational. Any type of communication from him could be the key that opens the door to what he is struggling with. It’s incredibly trying and frustrating to want to help your child when multiple communication barriers exist. 

As she communicates her situation to me, I feel her pain. I feel her angst. I know her frustration. It’s exhausting. But on this journey, you can’t get tired. You have to keep going. You have to keep navigating, deducting and assimulating. Even if you may never see the whole picture, one shared thought from your child is a beacon of light.  

These are not shiny, abbreviated forms of happiness. What we have is a connection and understanding created through inter-woven threads of time. What may appear simple from the outside — a story, a word, an emotion, a sign — is held up by solidarity and strength. Together we beam brighter under the sun and weather the storms through the test of time.

Just like a denim visor; with a good story behind it. 

Christie Taylor Uncategorized

Behind the Magic

Wil jumped onto the tube without hesitation.

Wil’s friend CJ, who we were visiting, propped himself on the tube next to Wil. Elizabeth laid down on the opposite side. CJ’s dad, Randy, asked if they were ready. All three gave a unanimous thumbs up. Randy fired up the boat and CJ’s mom, Cheri, was already expertly snapping pictures. Heavy clouds loomed; we wanted to tube as much as possible before the storm hit. 

With Wil’s apparent confidence, Randy took the tube over some higher waves. Wil’s smile never wavered.

Last year’s tubing expedition took loads of coaxing to get Wil on the tube. It was Cheri who was finally successful. She climbed on the tube wearing her sunglasses. She told Wil she didn’t want to lose them, so the tube would stay right next to the boat. Wil inched his way onto the tube next to Cheri. He had a tight grip and winced at every slight movement. 

Once Wil secured himself next to Cheri, he looked around the lake in awe. He couldn’t believe it! He’d made it onto the tube. After crossing that threshold, Wil never looked back. His bravery had clearly stuck with him into the next summer.

CJ, who will be a junior in high school this year, gives daily weather reports which he started during the pandemic. His weather reports became so popular that the local news has also broadcast them. CJ is a daredevil with watersports, is on the school’s marching band and bowling team, and shoots a mean 3-pointer. CJ, like Wil, has Trisomy 21, the most common form of Down syndrome. CJ recently started strength training and flexed his biceps for us. CJ asked Wil to join him in a few push-ups. Wil jumped right in with him. It became clear Wil needs to improve his core and upper body strength to do proper push-ups, but he saw CJ do it, so he knows he can do it too with time and practice. 

All of CJ’s interests may or may not match Wil’s, but it’s important for Wil to see what can be done by a slightly older peer. When Wil was a toddler he watched his sisters, Elizabeth and Katherine, swim in the lake. He wanted so badly to swim like they did but he didn’t like how the bottom of the lake felt on his feet. Even with water shoes, he was hard to convince. One day he put on one of his sister’s bathing suits thinking he could magically swim. He quickly found that wasn’t so. 

My parents, who live on the lake, kept walking Wil to the steps that led into the water. Little-by-little, step-by-step, he eased in. With time, encouragement and practice, mixed with the desire to swim like his sisters, he learned that he didn’t need magical powers. Now when he steps into the lake and jumps on a raft, his smile never wavers. 

Wil doesn’t have to sink repeated 3-pointers to have value (though he’s sunk a few). However, each new jump he achieves adds value to his life. There is no magic behind it — it’s role models like Katherine and Elizabeth, my parents and friends like CJ, Cheri and Randy plus a dose of desire, patience and leaps of faith. 

The smile on the other side of the leap, though…that’s all magic.

Christie Taylor Uncategorized

Tunes of the Territory

Wil had become overwhelmed and fled the situation with little warning. I chased after him and tried to get him to open up. He never did. 

Wil has grown greatly in his communication skills, and each time we go somewhere he grows in independence too. However there are multiple stops that must break way to starts. The unexpected throws Wil off and we find ourselves at a standstill. It’s all part of the territory, but at times the repeated standstills weigh on me. 

I’ve heard you need to fight for your joy. And some days I do. It seems the only way to get through at times. But whenever I take a deep breath, step back, open my eyes (and ears), I’ve found joy has a way of letting itself in.  

Last Wednesday night McKenna Marsh, a senior at Wil’s school, came over to watch Wil while Matt and I had a date night. Though we know McKenna and her family, this was the first time she would be Wil’s caregiver. Wil was very excited about this (as was I) so when McKenna arrived he ran to the door to let her in. We walked to the kitchen and started chatting. Wil’s high energy fell to silence. 

“Wil, you are very quiet. I know you are excited to spend time with McKenna. Is something on your mind?” I asked.

He tucked his head, and with a coy sideways smile at McKenna said, “I’m feeling a little bit shy.”

Joy flooded through me! Wil hadn’t retreated into deeper silence. He hadn’t run away. I hadn’t asked multiple questions to draw out his emotions. He opened up of his own will — by being a flirt! 

The next night, driving home from Special Olympics golf, with the windows down and country music blasting, Wil and I belted out the country songs at the top of our lungs. 

“Mom look!” As I rounded a curve, off to the right, hanging low over a wide-open field, the sun was an oversized fiery pink ball. Scattered clouds absorbed its color creating a brilliant sky. We fell in silent awe. 

Wil and I looked at each other with easy smiles and synchronously resumed our loud and off-pitch tunes. I never regret the weight of this territory, otherwise I may never know such heights.

Christie Taylor Down Syndrome

Open the Door to LEt In the Know

Last night my neighbor came over to deliver some squash and zucchini from her garden. Wil was sitting in the Lazy-boy watching Wild Kratts. He’d been to the pool, then outside playing, and had just finished eating dinner. He was chillin’.

My neighbor, Nancy, asked him some questions. He didn’t want to answer. Nancy takes Wil to the Dollar Store on a weekly basis to help him with life skills. She also has an adult son with autism. She understands how these situations can go. Wil kept making “umf” responses. “Well, I guess I am interrupting his TV show,” she said. “See you tomorrow, Wil.” As soon as she left Wil said, “Dollar Store with Nancy tomorrow.”

As simple as this moment in time seems, it was not to me. First of all, Nancy understood Wil. She urged words out of him, but didn’t force them or give up, either. She took time to understand the situation. And many times, as simple as that sounds, it’s not so simple when you don’t understand.

I wrote recently about Wil having a melt-down at my parent’s house. My sister and her kids were visiting, staying with my parent’s. Wil wanted to spend the night after a day of playing. It was not a good scene and all of us were exhausted afterwards.

The next day, going back to my parent’s to visit, we discussed the incident. My sister said her daughter’s friend works at a camp for kids with disabilities. This friend said it is helpful to anticipate what is going to happen. I sat there speechless. In my mind, my ego responded first. A 16-year-old girl who spent a summer with kids with disabilities knows more than I do? Puh-lease! My next thought was that I live in anticipation. Every single day, even for the simplest of tasks. Just going to the store might take an extra half-hour because Wil gets stuck on what hat he wants. Or he simply refuses to go. I’m always planning ahead for whenever and whatever. That is my norm, as well as the norm for Katherine and Elizabeth. Then I realized she just doesn’t know. She is trying to help. She lives 5 hours away and sees Wil about twice a year.

And that’s what it mainly comes down to. People aren’t trying to hurt, they just don’t know. They aren’t trying to be mean, but our egos kick in because we live this every day. Its easy to get defensive rather than inform. Every single moment is a teaching moment in our lives; not only with our kids, but for the world that surrounds us.