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

Down-right!

I’ve heard Down syndrome called Up syndrome. In the beginning, this upend in terminology enabled me to rise above the mess of emotions I was entangled in to better sort them out.

Then an interesting thing happened…over time I became increasingly grounded in my daily life; more than I had been in a long time. Wil was the gentle hand who guided me “Down” to my roots; to the person I was always created to be.

His ability to do this is not intentional. It is, simply and powerfully, because Wil unerringly stays true to the person he was always created to be.

I no longer think of “Down” in a negative sense. It’s a place to ground ourselves, and in so doing find we are moving in just the right direction, at the right time, and in the place we were meant to be.

Christie Taylor Uncategorized

The Game is Afoot!

When Wil was born, why a 3rd copy of the 21st chromosome occurs was — and still is — a scientific mystery.

When I struggled to gain acceptance after Wil’s diagnosis, I sought out a support group. My new support group friends hugged me and said I would know a great joy, even though I couldn’t see it now. A deeper mystery.

When Wil’s physical therapist said he had low muscle tone but would most definitely walk, I asked when. She answered that was up to Wil. An enduring mystery.

We live in an Information Age. And yet, I am thankful to know mystery is alive and well. Without it, I would have got caught up in how Trisomy 21 happens, rather than the more important fact of how my son will grow and thrive with Trisomy 21.

I’m thankful — and now understand why — my fellow support group friends could not explain the great joy I would soon come to know. It is an answer learned only by living; and extends beyond words. I now make quick friends with other Trisomy 21 parents as we share in this knowing that we have lived to learn.

And if I knew, or had a baseline idea, of when Wil would walk, I would have overlooked any millimeter of progress I then so desperately sought. Every success was a surprise gift, no matter how seemingly small.

Yes, mystery still exists! Just ask anyone who loves someone with a disability.

Our world is one of highly anticipated outcomes, interspersed with daily surprises — all the makings of a great mystery. And that’s no sh*t Sherlock!

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

Showing Up

Friday morning Wil refused to go to school. Elizabeth called me at work to let me know what was happening. Wil had ridden his bike down the driveway and wouldn’t budge. Elizabeth put me on speaker on her phone so I could talk to Wil. Wil threw her phone in the snow.

I called the school to let them know the kids would be tardy. I then called Wil’s paraprofessional to let her know. After trying a few tactics it was clear I needed to come home and the kids would then be very late. I was just on the road when Elizabeth called back.

A friend they drive to school called her mom to let her know she was going to be late to school due to Wil being planted on his bike in the driveway. Her mom hopped in her car, drove up to Wil on his bike and said, “Hey Wil, want a ride to school?”

“Sure!” He said and got in her car just like that after a mornings long standoff!

I was so relieved they all made it to school and Wil turned his day around (with an added bribe of McDonalds). It wasn’t until later in the day that a coworker brought to my attention that it was funny Wil threw the phone in the snow so as not to talk to me.

Katherine and Elizabeth deserve a medal because this is their normal and they work hard to navigate Wil’s tough times. And wow, there are amazing people who show up just when you need them; and who remind you to laugh! ❤️

Christie Taylor Uncategorized

Extra, extra!

Elizabeth’s basketball games are loud and overwhelming to Wil, so sometimes I get a babysitter for him, and sometimes I bring him to support his sister and for the exposure. He never forgets to bring his ear protectors.

Wil handles the games well; he gets a hot dog and pop out of the deal and enjoys seeing friends.

Even so, each break in the game Wil asks if it’s time to go. When it is, he is up the bleachers and off to the car in a hot second. Last night, he headed up the bleacher steps as I collected our stuff hurriedly to catch up to him. I knew I could catch him, but fortunately a friend met him at the top of the bleachers and talked to him. The gift of extra time and seeing Wil connect with a friend was a breath of fresh air. His friend’s mom walked by me as I was about to head up the bleachers to meet Wil. I told her how grateful I was for the time her son afforded me. So she called up to her son to keep talking to Wil til I met up with them. Then she said to me, every extra minute we get counts.

Her son also has a disability. So she knows all the extras involved in all we do. And to know those without having to explain them to someone else is also a breath of fresh air.

I met up with Wil and his friend, we said our goodbyes, zipped up our coats, and walked out together, Wil dancing in the parking lot, “Mom dance with me!” on the way to the car. I breathed in the cold air, grabbed Wil’s hand and danced, thankful for all the extras.

Christie Taylor Uncategorized

Naturally

Yesterday Wil struggled to get ready for school. With my new job, Katherine and Elizabeth get Wil ready for school four mornings a week. When I coached early mornings, the twins got him ready for school two mornings a week so it’s not a new experience.


With this increased time that I’m gone in the mornings, I hug Wil goodbye while he’s still in bed and make his breakfast. Though Wil can make his own breakfast, my making it gives him forward momentum to know Mom made it and it’s waiting for him. So far so good until yesterday.


I did let him stay up later than usual the previous night as Luke Bryan was hosting the CMA awards (as you know by now, Wil adores Luke Bryan), and Wil loves most country music, so that likely played a part.


Anyway, Wil wouldn’t get out of bed. The twins know all the tricks but nothing worked. Elizabeth remembered one time I left him home when he had this behavior. I drove Katherine and Elizabeth to school so they wouldn’t be late, then returned to find Wil had eaten and gotten dressed in the time I was gone. He didn’t pull that stunt again until now.

So Elizabeth, fortunately having an online class her first hour, drove Katherine and their friend Kimmy to school, then returned for Wil. Sure enough, he had gotten dressed, eaten breakfast and was ready to go.


When I arrived home from work Wil said to me, “Elizabeth left me!” (That’s a milestone in communicative expression for Wil, and I love how it has teenage drama in it).


“Why did she leave you?” I asked.


“Hmpf.” He shrugged his shoulders.


“I think you know why. Tonight we’ll go to bed early so you aren’t as tired. And be good for your sisters.”


“Ok mom!”


I’m impressed with Wil’s expression, and impressed with Katherine and Elizabeth. They have no idea how much they navigate as a natural part of their day, and yet they do it so naturally ❤️

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!).