Christie Taylor Uncategorized

It’s in the Experience

The teenaged lifeguard; tall, lean and curly-haired, stood on the edge of the wave pool blowing his whistle — at me.

I saw her face in his; though she was his senior by at least 20 years, with straight brown hair and a brisk uniform. She was resolute to get Wil’s boarding pass — from him.

Though the airport incident happened over 2 years before the wave pool incident, time came together in their parallels.

When a pool or a plane is involved, Wil is the happiest guy on the planet; until he’s not. Both travel and swimming fill Wil with excitement, unless it brims over to overwhelm; rendering him stuck on the spot.

In the airport, Wil was well on his way to overwhelm. I saw it building, so did my best to keep him distracted and on-the-move. But the heaviness was taking him over. Wil has never had a problem going through security, so I didn’t anticipate an issue. But when we approached the podium, either Wil read this security guard’s demeanor, or overwhelm finally overtook him. He sat on the ground, smack dab in front of the security guard’s podium. Not the wisest choice, but there we were.

I offered to hand the security guard Wil’s boarding pass, but she refused. He had to do it. I explained he was overwhelmed and had Down syndrome. That wasn’t enough for her. A grown woman chose a stand-off with a then 13-year-old boy with Down syndrome.

Fortunately, a few podiums over, another security guard was witness to what was happening. She asked how she could help. I explained our situation. She reached her hand out to Wil, he accepted it, and she walked us down to another podium. I heard the stolid security guard, upon our leaving, say to the security guard that helped us, “I was just doing my job.”

“I understand we need to get out of the pool,” I said to the curly-haired lifeguard. “My son won’t get out on his own. Just give me a minute.” (I sent up a silent prayer that a minute was all we’d need.)

I crouched down next to Wil and explained that it was dangerous to stay in the water; that a storm was coming; that when lifeguards hear thunder we need to get out; that we need to respect the rules; that they are there for our safety.

I knew my words wouldn’t motivate Wil out of the water now, but they would have meaning later should this happen again. Wil doesn’t fully grasp danger, but he does have an ironclad memory. When I preface a pool trip with the words “we have to get out if there is thunder” these will no longer be empty words. Experience gives Wil meaning to the words, thus being the best teacher.

A pretty lifeguard with white-blond hair stood only a few feet from us. Wil, being a teenager, would certainly respond better to her than me. I walked up to her and said, “My son isn’t wanting to get out. When he’s like this, he does much better with people who are not mom. Would you mind asking him to get out. Maybe offering him your hand?”

She willingly agreed, and approached Wil with an outstretched hand. Wil lifted his head, but couldn’t quite motivate himself to fully reach back. Though he stayed in the pool, I could see she had released some of his resistance.

Two female sheriffs that were nearby approached Wil.

“Would you like a sticker?” They held golden star badges up for Wil to see. I appreciated their efforts, but there was no way a sticker was going to prompt him out of the water (but maybe a trip to the clink would!).

Then another teenaged lifeguard, with auburn hair, walked up to me and said, “Can I help?”

The clouds parted and angels sang! No, that didn’t happen. Or else we would have got back to swimming. But that’s exactly how those words felt.

Three little words; only 8 letters in their entirety. And yet, I knew they were more than words; there had to be experience behind them.

The auburn-haired lifeguard, with a calm, friendly demeanor, reached her hand out to Wil and said, “Would you like to come with me?” Wil must have read her demeanor, because he stood up without hesitation and took her hand. He then looked at the blond lifeguard and took her hand too. Wil walked out of the water hand-in-hand with the two lovely lifeguards. Then the sheriffs gave Wil his stickers. I hope curly-haired whistle-blower was watching 😉

With Wil now out of the water, my main focus was to keep him moving forward. If this were not the case, I would have circled back to ask the auburn-haired lifeguard what inspired her to ask to help (same with the helpful security guard). What experience is in their back-pocket to step in and offer help?

Could it simply be a strong desire to help? Possibly, but my guess is it goes deeper than that. Is it gained from the experience of inclusion during their school years? Is it gained from experience with a family member or friend with a disability? Is it gained from experience as first being an observer then learning from situations such as these?

What transforms a stolid whistle-blower into an asker? What opens a mind from “doing my job” to “can I help?”

These are key questions that lead to the progression of acceptance and understanding of people with disabilities.

Within each of these questions, and likely within each of the answers, lies one common theme: experience.

And that gives me hope, because we can all learn from experience, if we choose to.

Christie Taylor Uncategorized

A Little Can Mean a Lot

Yesterday I went to Wolf’s Westside Automotive Service for an oil change. I had been there the previous day to have my tire patched. When I came in for my tire, the front door was propped open, the garage bay doors rolled up, and a refreshing breeze flowed through the lobby.

Yesterday was just that much warmer, so the bay and front doors were closed; a unit air conditioner cooled the lobby.

The owner, Pete, came into the lobby from the garage, sat down across from me, and delivered an update on my car’s service. Our conversation transitioned from the car to fitness and then into a story about his friend who has an adult daughter with Down syndrome. Though I don’t know Pete beyond the walls of his garage, in his storytelling, I heard true understanding. To attain that, without a child of his own with Ds, requires an openness to understand.

His shared story, and openness, were especially timely and meaningful to me as I’ve recently experienced the challenge of closed minds at a new level. I admit I’m somewhat naive in this area; thankfully. My fighting skills are weak; again thankfully. This town has always embraced Wil. I’ve needed to advocate, yes, but advocation is a conversation when you advocate with open minds.

With Wil getting older and other certain circumstances, I have now experienced lack of understanding, and the unwillingness to understand, on a broader level.

It’s hard to explain this life because a little means a lot. How do I explain, that every time I drive in the car with Wil, and he belts out Luke Bryan lyrics with complete accuracy, the elation I feel? That every word he forms beams me back to stretched-out years patiently waiting and diligently working on forming his first words? I have a million such stories.

All I need is a little crack in the door of a mind to get through. And yet, I physically feel the air fall dead between myself and a mind that is closed. I find this disconnection rarely intentional, and not meant to be hurtful. It’s not lack of experience with a disability that is the issue, it’s the unwillingness to open a door to understanding. Even the slightest creak of a hinge is all I ask. But for reasons of their own, deep within, they don’t want to know. The door remains closed. I find ways to keep knocking.

But not yesterday. There I sat, in our small town, for an oil change of all things, and with the natural flow of conversation a story was shared with full understanding. There was no knocking, no prying, no trying. The air conditioning was working, but all I felt was a needed breath of fresh air.

A little can mean a lot.

Wil and his friend, Manny
Christie Taylor Uncategorized

Heavy and Light

Wil loves riding his recumbent bike around our property. The challenge is I can’t fully trust he won’t go out to the road. And it’s a busy road.

I was talking to fellow mother yesterday. Her 16-year-old son, who also has Ds, is in summer speech and occupational therapy with Wil. As much as her son loves swimming, she will never have a pool. For the same reason I need to check in on Wil on his bike. She can’t fully trust he won’t go in the pool unsupervised.

Our children are teenagers. They know they are teenagers, their bodies tell them they are teenagers, and they desire the independence of teenagers. And as a parent that has raised 3 babies to teenage-hood, I enjoy a certain measure of independence too.

Last night, Matt and I were enjoying relaxing together after dinner. Wil wanted nothing to do with relaxing. He went outside to ride, and sure enough when I went to check on him he was getting close to the road. He was likely trying to make the biggest circle around our yard that he could, but again, I can’t be fully sure.

Even at 15 years old, he requires an extra level of supervision. And possibly, or possibly not, for many more years to come. With Wil one thing is certain — I won’t know until I know. (If you are a neurotic planner like me, a child w Ds is your best cure! 😂)

Many of my friends are becoming empty nesters. Matt and I may or may not be. I knew this uncertainty would be a reality when Wil was born, but now that the reality is closer, its an interesting feeling of limbo to be in.

I love my life with Wil. He is so fun to be with. We sing in our off-key voices at the top of our lungs. He still surprises me with new milestones, and huge bear-hugs that now knock me over as he’s grown. I’m thankful to fully share in his youthful exuberance.

But I also have a child that may never fully grasp the risks of certain fundamental independences into adulthood. The fullness of that can feel very heavy at times.

And yet, when life feels heavy, it’s being in Wil’s presence that purely and fully lightens the load.

Christie Taylor Down Syndrome

Just Make Him Do It

One of the most common things I hear (and what many of my friends who have children w disabilities hear) is, “well, just make him do it.”

I literally feel a huge distance grow between us with this seeming logic. And yet, it’s a very difficult distance to close as there is no logical explanation. It’s a “living it” thing.

We parents, special education teachers, para educators, and caregivers are constantly on the alert for “triggers” that cause our kids to dig in their heels.

Some of these triggers are constant, and we have created ways to work with them.

Some of these triggers are only known to our kids and appear spontaneously to us. And when triggered, there is no “make him do it.”

When Wil refused to get on a connecting flight, how I wish I could give the “make him do it-ers” a chance to use their logic on Wil that day. That would have been a helluva education.

Heck, I don’t know even know it all and I’ve been raising Wil for over 15 years, not to mention knowing many other children with Down syndrome quite well. And each and every kid defies this logic.

So next time you want to think it’s logical, and fits some kind of mold, I challenge you to spend a day with Wil, his friends, or in a life skills room, and let me know how that logic goes for you.

Christie Taylor Down Syndrome

You Go Girl!

At the airport yesterday, Wil was struggling a bit with some young children crying.

As a Starbucks was nearby, I asked Elizabeth to walk him over there while I stayed with our carry-on luggage (as Katherine was in another shop).

Wil was reluctant at Starbucks too, so Elizabeth walked him back to sit with me. She then walked back to Starbucks to get herself something to drink. A woman walked up to Elizabeth while she waited in line for her drink. The woman said she observed Elizabeth with her brother, and expressed her admiration at Elizabeth’s mature patience and how she talked to Wil. Then the woman said, God Bless, and walked away.

Elizabeth was surprised, yet pleased, by this. She was just being a sister to Wil as she always is (and Katherine has this same mature patience with Wil, as well), and didn’t see her actions as anything different than normal behavior.

In Elizabeth’s everyday life, she lifted the spirits of another, and she was uplifted in return.

I’m proud of Elizabeth (always), and also proud of the woman who had the courage to step up and acknowledge Elizabeth.

Katherine, Elizabeth, Wil

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

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 Down Syndrome

Where There’s a Why

“Wil, are you going to get dressed?”

“Why?” 

“Because its morning.”

“Why Mom?”

“Because the earth made another full rotation.”

“Oh, ok.” Wil went to his bedroom and got dressed.

Though Wil’s 8th grade year had its challenges, in comparison to his 7th grade year, it was smooth sailing. But it took what we learned in his 7th grade year to break way to the “oh, ok” of where we are now. 

When 7th grade hit, so did puberty and hormones. And they hit hard. Wil developed multiple new behaviors that stumped his teachers and me. With Wil’s communication delays, I repeatedly asked my own series of whys to uncover his thought processes. I knew we would break way to that “oh, ok” moment, but I didn’t know what that looked like or how many whys it would take to get there. 

My first personal experience with a behavior plan was in Wil’s 7th grade year. Behavior plans are more “if then” plans that follow their own timeline. Wil’s teachers and I planned ways to support him through his pubescent changes. We learned from each experience, asked more why questions in relation to that experience, and revised the plan with what we learned. In this way we inched ahead, why-by-why, experience-by-experience.  Eventually, one of his barriers would break and he’d fly forward at full speed. I stood there with my head spinning at the seemingly instant transformation.

Wil has a recumbent bike that he drives like a madman. He cuts corners burning rubber and flies down the grassy hill in our front lawn. The fenders over the front and back tires are bent from spills. Fortunately a fall from a recumbent bike isn’t far. Wil gets back up, and gets back to riding full speed ahead.

Wil recently rode his bike over something sharp— likely a big rock, but he won’t tell me what that something was. Maybe in time he will tell me. Whatever it was, it tore a hole through the actual tire and into the inner tube. His bike was sidelined.

I’ve never fixed a tire on a bike before. I checked the sizing of the inner tube and tire, bought a new one of each, and set to work on replacing it. When I googled directions on how to fix a bike tire, I read that a proficient cyclist can complete the task in about 7 minutes. For the novice, like myself, it can take 20 minutes or more. I didn’t time myself, but I can assure you it took me all of that 20 minutes and more.

After replacing the tire, I gave Wil’s bike a quick test spin. Then I called Wil to come outside. Seeing the new tire, he jumped on his bike and tore around the driveway without hesitation. 

“It’s fixed mom!” He said in surprised awe. 

“It took me some time but I got it done for you, Wil.” 

“Why?” Wil asked. 

“Because I love to see you fly.”

“Oh, ok,” he called back to me already nearly to the bottom of the hill.

When fueled by our why, no matter the timeline, we find a way to fly.