Christie Taylor Uncategorized

Mixed Medley

I dropped Wil off on the second morning of his first all-day camp.

He talked about camp for weeks; water balloon tosses, scavenger hunts, a trip to the beach – and parent-free. There were no tears at drop-off; Wil and I were both ready for this leap in independence.

This summer has been the Mom & Wil show. As 17-year-olds, Katherine and Elizabeth have taken trips, worked, and enjoyed the freedom of driving teenagers. As such, this summer has been a sneak-peek into life with Wil when Katherine and Elizabeth are away at college. As close as Wil and I are, we both require a level of time on our own. I knew it was time to find a way to spread our wings — but how and where?

This first all-day camp experience would be an ideal situation for Wil. It is where he takes taekwondo, so he is familiar with the staff and the venue. Master and his staff are very understanding of Wil’s abilities. They know when to push him, and when to give him space. Wil would enjoy time with typically developing peers and two of his taekwondo buddies who also have Down syndrome.

Even so, it would be a long day for Wil. He was focused on the fun; I was focused on preparing him for a full day.

“Wil, you know camp is a full day; the same as a school day. You’ve got to hold it together.”

“Ok, mom.”

“You are going to have a lot of fun. But you may get tired. And that’s ok. Just tell someone. Find Master, or one of the helpers in a red shirt. Tell them you need a break. Use your words. No plopping or running off. Got it?”

“Ok, mom. Camp! Yay, woohoo!”

I played my preparatory words on repeat in the weeks leading up to camp. It may seem redundant, but I knew from experience that he’d fly in blazing, only to find that it truly was a long day. He’d then fizzle into an exhausted plop on the floor, or flee overwhelmed out the door. His words, or words by others spoken to him, would be lost. Only time and space would unravel him.

Wil is fully capable of communicating that he needs a break. He just needs to be prepared to use his words before overwhelm or exhaustion overtake him. Therefore, we play things on repeat around here.

Wil focuses much of his life on the fun side, and I’m on a joy-ride with him. The flip side of that is anticipation, preparation, and words on repeat — and I’m on a replay-loop of constant-ness with him. Sometimes I need to step out of the loop and take time for myself, while Wil needs to take a step away from me, and forward into independence.

On the drive to camp this morning, Wil sang his own impressive a cappella medley of Luke Bryan songs — I thought dang! Even Luke would be taking notes on what Wil put together. But then again, Wil knows better than most how a mixed medley works.

Christie Taylor Uncategorized

Yesterday Was a When

Yesterday, Wil and I had lunch and a conversation on the back porch.

One night, I sat on the edge of Wil’s bed. It was the school year of 2016. In the quiet before sleep, Wil was most apt to share his day. I always started with questions about his friends and lunch; they were (and still are) his favorite topics. I also knew the answers, so could prompt him if he got stuck.

“Who did you sit with at lunch today?”

“Ashley.”

“And…”

“Lila.”

“And…”

“Sarah.”

“Did you play on the playground?”

Wil nodded.

“What did you play?”

“Hmpf.”

“Did you play with a ball?”

“Hmpf.”

“The swings?”

As I prompted him, word-by-word, Wil shared pieces of his school day.

Then the tears came. They seemed out of nowhere, but I knew they came from somewhere.

“Wil, what is wrong honey? Why are you crying?” No answer.

This is where it got tricky. Did I continue to ask questions? Questions could further frustrate Wil, causing him to clam up. Or questions could do the opposite; open Wil up and help him feel understood. I’d ask leading questions, as he wouldn’t be able to offer what happened. But even the leading questions had consequences.
On another occasion, when Wil was unexplicably upset, I asked: “Was someone mean to you?” He looked up at me like “Why would anyone be mean to me?” And there I did it, his very own mother, who most wanted to protect him from mean people, put the very idea of mean people in his head.

“Wil, do you feel sad?” He nodded.

“Wil, do you feel mad?” He nodded.

“Can you tell me one thing that upset you?” He nodded.

“Would you like a hug?” He nodded and we hugged for a long time. My tears started too. I needed to understand his emotions, and he needed me to understand them, too.

Communication barriers are very sturdy. They take extreme patience and diligence to break through. I never know what question will lead to a hairline crack. Or what question will seal it shut.

What I do know is the answer to most things with Wil is time.

Given enough time, the words would come. I just didn’t know when.

I’ll never know what happened that day. It may have simply been overwhelm from everyday life. Wil’s teacher and paraprofessional were a dream team that year. If anything had happened to Wil at school on their watch, I’d know about it.

There are so many painful memories; days I wished I could even make a hairline fracture in the communication barrier. But Wil couldn’t meet me where I was, and I didn’t know how to meet him where he was.

Over time, we made progress. Like Thor’s mighty hammer, we made big, clunky breaks. Some on purpose and some by trial and error.

But when you make a break, you can’t miss it.

It flows — like a lunchtime conversation carried away on a summer breeze.

Yesterday was a when

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

For What They Do

“Wil, I miss you,” popped up in the chat box from Sarah Stommen. Virtual school started back up again a week from last Friday. Wil kicked off his virtual schedule full of steam, but by Thursday the task of getting him in front of the computer was a feat. Sarah saw the look on Wil’s face at the beginning of their virtual social studies class and knew he needed some encouragement.

When I pointed out Sarah’s message to Wil, he quickly turned his attention to the chat box, read the message for himself and a wide smile crossed his face. He then remembered he didn’t want to be there and turned his head to the side.

“Hey Wil,” Ms. Kastel, their social studies teacher said, “where is your dog?” Sarah was holding her dog, Maizie. Wil usually loves to share his pets along with his classmates, but he shook his head. I ran to pick up Oreo, as he was sleeping in the sun near us. I placed Oreo in Wil’s lap but he refused to share our cat with his classmates, too.  Ms. Kastel then asked Wil a few questions about subjects he enjoys discussing, like country music (she’s fostered a love for Johnny Cash in him). Ms. Kastel has a knack for pulling Wil out of his stuck feelings, but on this day, he was determined to stay stuck.

That same afternoon, Wil’s friend, Lila Harvey, sent Wil a “snap” through Elizabeth’s Snapchat (Elizabeth shares her Snapchat with Wil). Lila knew he’d been having a tough time with virtual school and wanted to cheer him up.  

When Wil was a baby, and his diagnosis fresh, I reached out to support groups and read books. I was in a battle against the “wouldn’t be’s.” How could I prevent Wil from falling behind? What did I need to do? I signed him up for all the therapies. Though these therapies were places of growth and strength for Wil, they became those places for me too. When Wil was only months old, his occupational  therapist laid him on a blanket and dangled a toy above him. The goal was for Wil to develop the strength the reach across the centerline of his body. I never knew such details existed. I never knew such heights of joy as I watched every inch of progress Wil made on his way to reaching that toy. Every new reach, every new grasp, every new step, every new word, every new milestone was celebrated. I found myself celebrating not because I believed Wil wouldn’t; I celebrated because he did.  

It’s easy to say these 14 years later that Wil deserves loving friends and teachers. And he does. Yet I remember well the “wouldn’t be’s.” I remember well the process of growth, strength and joy that shifted my focus in a new direction. So when I celebrate friends like Sarah and Lila and teachers like Ms. Kastel for who they are and what they do, it’s not because I believe that they wouldn’t. I celebrate them because they do. 

Christie Taylor Down Syndrome

A Love Story

The girl stood behind the hospital wheelchair and clasped the narrow top of the plastic seat. Her mother, standing beside her (both about the same height) grabbed a handful of the girl’s pale blue shirt, directly at the small of her back, and wrapped it tight around her fist. The girl stepped forward, wobbly and deliberate, landing each step on the outside edge of her shoes, with a deeper bend in her left leg. I would guess the girl to be fifteen or sixteen years old, not solely by her height, but by her desired independence – her mother’s expert grip allowing for this. 

Further down the hallway the mother asked, “Are you hungry?” The girl nodded. “Well, let me push you then.” The girl kept walking.

“I know you don’t want to sit,” the mother said, “but we can get to the car faster for lunch. Come on, we’ll play race car.” The girl conceded, and supported herself along the edges of the wheelchair to take a seat. The mother grabbed the black-capped wheelchair handles and sped forward. 

Just last week I left Wil home alone while I took his sisters to school. Wil was stuck on which hat to wear. He’d been sitting in front of his plastic bin of hats for 20 minutes. “Sorry, Wil, time is up,” I said. “I’m taking your sisters to school because it’s not fair to make them late. I’ll see you in a few minutes.” He looked up at me and back down again, but didn’t budge. 

On our drive to school Elizabeth asked, “How late do you think he’ll go to school today?”

“Your guess is as good as mine. When I get home he’ll either still be stuck on the floor, or blasting his iPad to Luke Bryan thinking he has the day off, or running away in the back field.” 

When I turned the car back into our driveway, Wil was seated on the porch steps. His coat and backpack were on – he had put them on himself. Wil’s morning, though wobbly and deliberate, was also deeply triumphant for these things. 

It is easy to grow impatient, as hesitations are built into our everyday – I understand the wheelchair race car game well. I was having coffee with my friend, Laura Walsh, whose son Manny is also a teen with Down syndrome. We were sharing stories about mornings with our boys. Manny was taking his time getting dressed. “Put your freaking shoes on already! I wanted to scream. But of course, I took a deep breath and was calm.” We laughed so hard over that. Our patience may seem supernatural on the outside, but some days our brain begs to put the pedal to the medal. 

Our stories have been looked on with pity or sorrow. Our stories have been dismissed with careless derogatory words. Our stories have been seen as reserved only for “special” people. But when you really take a moment to observe, though our stories of navigating independence with our children may look different, in our own ways we are all wobbly, hesitant, deliberate, impatient and holding on tight to what we love, even as we let go. 

Christie Taylor Down Syndrome

Some-Day

Our family arrived at our rental condo at about 8pm on a Thursday night. We were in northern Michigan for a two-day ski trip, but Wil doesn’t ski. Our condo advertised access to two pools at the ski resort. The plan was for Wil and I to bounce between the two pools on Friday (Wil loves to swim) while Matt, Katherine and Elizabeth skied. On Saturday, Matt and I would swap places.  

The pool pass, a large blue wooden rectangle, was laid out for us in plain sight on the condo’s kitchen counter. Wil spied it immediately. “Go swimming, Mom!” 

I called the resort to inquire how late the pools were open. I was informed both pools were closed temporarily, but there was another pool open in the resort, only our pass didn’t give us access. My disappointment welled, but I tried to keep calm for Wil. Matt got on the phone with the rental company. How could they make this right for us, he asked; how about giving us access to the open pool? Sorry, the rental company answered, nothing we can do, but hey, you have access to free nature trails.

We racked our brains for other options for Wil. With the pandemic, most activities required advanced ticket purchase. Trail biking was not an option for Wil. The dog sledding looked really cool but they were booked through mid-March. We did have tubing tickets for Friday and Saturday, which secured an hour of fun each day. What to do with the other hours?

Friday morning, Wil and I dropped Matt, Katherine and Elizabeth off at the resort to ski. I drove away with no idea where to go. I passed a building labeled “The Nordic Center,” made a quick U-turn and cut back into The Nordic Center’s parking lot.

Once inside, Wil and I met Lee, the young woman working behind the desk. I explained our pool situation to Lee; that we were seeking an alternative. Wil is active, but he does have low muscle tone so cross-country skiing may quickly zap his energy and we’d be right back where we started. Did she have any suggestions?

Lee suggested snow shoeing for our next adventure. “Wil, these snow shoes are really easy to take off if you need a break.” (Lee spoke directly to Wil about anything pertaining to him, rather than to me. Though this may seem logical, it is often not the case. I appreciated her greatly.) 

The snow on the trail was packed down tight, the temps a balmy 40 degrees; near perfect conditions for Wil’s first attempt at snow shoeing. We made it further down the trail than I anticipated before Wil dropped to the ground. “Break, Mom,” he said.

Wil laid down and turned his gaze up. I laid down next him and breathed in the crisp, earthy smell of the trail. “Look, Mom,” Wil said. I followed his gaze to a tall, narrow, spindly-branched tree arched high above us; beyond it an expansive sky that answered every question you might have had about infinity. Wil turned his head toward me and smiled. I turned and smiled back.  

This was a someday moment. A moment I promise myself I will stop and enjoy — someday. A moment easily shielded by dashed plans and what-could-have-beens. A moment when I recognized time must stand still to grasp the unboundedness of it. A moment that I knew was exactly what I was looking for, without knowing I was looking for it at all.

Christie Taylor Down Syndrome

The Dance

When Wil was born, I wondered on his differences. How would they separate him from making friends? How would his differences separate him from living a full life? What I didn’t know was Wil’s differences would become woven so deeply into our daily lives that they would be our norm.

One example is Wil’s dancing. When the mood strikes, Wil busts a move down the aisles of Target, Busch’s or Meijer. Wil gets jazzed going shopping with his sisters, because there are mirrors hanging everywhere to dance in front of. 

Chopping vegetables with me for dinner is always a hip wiggling activity for Wil, and a car ride another opportunity to belt a tune out the window.  

Wil’s had the music in him for so long, it’s ingrained in our lives. I forget that not everyone dances whenever the mood strikes, or bounces to the beat in their car seat, until a stranger gives Wil a smile as he rocks out to his own tune. I smile inwardly to myself, as I smile outwardly back to the stranger, how one-dimensionally I once viewed what differences meant. 

Wil’s dear friend, Sarah, is a ballerina. Sarah is graceful in every sense of the word. She is tall and lithe, and practically floats on air when she walks. Wil has low muscle tone so he lands flat-footed with a slight side-to-side gait. I love watching the two friends walk together, because they could not carry themselves more differently. Sarah, however, always makes a point to walk at Wil’s speed, and when he talks, she leans over so they are eye-to-eye. Then, I can almost predict at some point during their conversation, Sarah will throw her head back laughing at something Wil shared with her. And they always find time to share a dance. It’s been that way since preschool. 

On Wil’s 14th birthday, Sarah wrote in a beautifully-crafted handmade card to him: 

“I am so lucky to know you. You are so amazing and always make me laugh. Goodness, you’ve gotta be the funniest person on this Earth! Your laugh is so contagious. I always have fun walking around with you and talking about lots of things. Hope you have the best birthday bud!” 

As I read Sarah’s words, my eyes welled with tears. I now wonder, these 14 years later, how on earth did the differences I once so worried on become a true blessing? That this life, that such friends, have woven themselves into the dance of our lives as our norm. 

At one time differences stopped me in my tracks. Now, all I see are blessings in the dance.