Christie Taylor Down Syndrome

Submerged to Surfaced

Wil totally worked the system last night…

Over the summer, Wil greatly anticipated celebrating at his Connect friends’ senior grad parties. However, once at the event, he’d soon become overwhelmed with the activity and number of people and flee.

As many of the grads live in the country, I’d turn my back in conversation, only to find Wil already deep in a field (we live on acreage so he’s very familiar with going on what he calls “adventures”). I’ve chased him through a few fields over the years. Fortunately at one city home, he only rounded the backyard to the front porch. The two of us hung out there, Wil refusing to move, for about an hour.

Matt and I had talks with Wil before and after each grad party: It’s okay to feel overwhelmed. You just need to tell us. Just say you feel overwhelmed and want to go.

Wil nodded in agreement, but the next grad party he’d flee again. So we’d again reinforce Wil using his words. But again he’d flee.

So fast-forward from the summer to last night. Wil did not want to shower but he needed one. I prepared everything for him to reduce any further obstacles; I turned on the water, got his towel, pulled back the shower curtain, then left him to it.

Less than 5 minutes later he came marching up the stairs in his towel, but with hair completely dry.

“Wil,” I asked, “why didn’t you finish your shower?”

“I was overwhelmed.”

“Nice try,” I said stifling a laugh. “Now back downstairs and finish your shower.”

He went back downstairs but switched the shower to a bath. Oh the teenage rebellion 🙄😂

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A Good Morning!

Wil set the alarm on his iPad last night for school (I showed him how after asking the twins if they had an old alarm clock Wil could use. Elizabeth said, “Mom, just use his iPad” 🙄).

On mornings I work, Katherine or Elizabeth typically wake Wil. He is very independent now, and it’s getting rarer for him to have sluggish mornings. Even if he does get stuck at times, he recovers much quicker.

As getting Wil out of bed does not require the patient encouragement it used to, I suggested he try getting himself up. He was all about it.

Just last year, setting his own alarm would not have been an option. He would have felt abandoned. He required our encouragement and our consistency to start his day right. If there was even one chink in the chain, it could throw the whole day off.

Many of Wil’s behaviors have been associated with challenges in communication. But with his desire for independence, his communication skills continue to expand.

He has the maturity now to see how communication gets him where he wants to go. His ability to ask for help when he needs it, and to more clearly identify and express his emotions, has helped him make forward strides. He still runs off when he is overwhelmed or frustrated, and likely will for some time. But again, he recovers more quickly than in times past. The more exposure he has with these situations, such as his recent choir experience I wrote about, the more confidence he’ll build.

This morning Wil woke to his alarm, dressed in the outfit he picked out the night before, ate breakfast, filled his water bottle and put it in his backpack. When I got home from work, he was rocking in the rocking chair watching Wild Kratts.

“Mom! I’m all dressed!” He said as he popped out of the rocking chair with both arms raised.

Whenever Wil hits a growth spurt like this my head spins in wonder. Only a year ago, this leap wasn’t possible. Whenever I force time on Wil, he forces back. But when the foundation is laid, and we progress the best way we know how, the time reveals itself.

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Proudly Hail’d

At last Friday’s homecoming game, Wil and five choir companions formed a half circle in front of a microphone. The spectators, packing the stands, rose with hats and hands placed over hearts. The perfectly uniformed Manchester marching band spanned the field behind the semi-circle of singers and began their patriotic play. I held my breath.

The stands full of spectators would not challenge Wil’s nerve (he likes to be on stage!) It would be the volume of the band; he becomes un-nerved with loud, unpredictable noises such as the cymbals. During practice rounds, when the cymbals were up, Wil was out.

Kristi Campbell called me to form a plan (thank God for amazing paraprofessionals!). Though Wil has made vast progress in his tolerance for loud noises, the chance of him fleeing the situation still wasn’t 0%. We both wanted Wil to shine; of his own will. So Kristi said she’d stand nearby, but unobtrusively. I said I’d take a spot in the front row of the stands (I wanted a front seat anyway!).

When the band played and the choir sang, it was flawless. Jacob Mann conducted the band forward — as he did a conductor’s walk backward. Mr. Throneberry conducted the semi-cirlce of singers. Wil smiled and seriously recalled his lyrics — I even detected some of his high notes over the microphone.

It was beautiful, inspiring and right on note (Wil may have been a few beats behind in places, but that’s right on note too). I’m so very proud of Wil, and I couldn’t more proudly have hail’d the way our town comes together!

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Out-Turn

Most mornings these days Wil wakes up happy and cooperative; he’s nearly sixteen years old now. We have a few morning struggles but nothing like his earlier years. He enjoys school, seeing his friends, and his independence. We talk about what day of the week it is, the month and the season. Wil keeps close track of the days and the month, but occasionally will get thrown off on the season (Mother Nature herself does the same!).

He picks out his clothes and what he wants for breakfast the night before so both are set in his mind. These choices, even made ahead of time, are what can make or break a morning.

One morning I made a ham, cheese & spinach wrap per his previous night’s request. Elizabeth woke him up as I was coaching. When I arrived home, Wil was seated on the Lazy-boy, still in pajamas, the ham, cheese and spinach wrap on a plate next to him untouched. There were only 10 minutes left before we needed to leave for school.

“Mom,” Elizabeth said, “he won’t eat it. I’ve tried offering other things but he gets more upset. So I’m giving him a minute. And I need to get ready for school.”

“Well, good! I’m starving!” I said and took a huge bite of his wrap.

“Mooooom!” Wil said. I was relieved to hear humor in his voice. I jumped on the opening he provided before he slammed it shut. I took another bite and danced around.

“Geez, mom!”

“What do you want to eat? I’ll make it quick. You need to get dressed.” I said.

Wil looked up at me; he contemplated.

A long time ago a sales manager commonly repeated an acronym: SUAL (shut up and listen).

It’s sound advice. Any further rushing or pushing takes control from him, and thus requires even more time for him to unravel.

I SUAL.

I SUAL.

I SUAL.

“Turkey hot dog!” He said.

I sighed in relief. “You got it! Go get dressed, quick like a tortoise!” (I used to say fast like a rabbit, and he’d reply slow like a tortoise, so this joke usually got him moving).

If this were a game of curling, I’d be the sweeper. Vigorously, patiently, tactically, I smooth the path for Wil to make his way — curving at times — successfully, independently onto the target.

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Blending Scenes

“The Buddy Walk is only one mile walk. I think you can handle it,” I joked. “And really, with so many people with Down syndrome, we don’t move fast!”

When The Peanut Butter Falcon was available for streaming, I didn’t want to watch it on my own. The viewing experience would be fuller with friends who knew Down syndrome. Whether the movie was good, bad or otherwise, we’d share in that knowing together.

A group of us moms got together at my house. The majority of us were raising teens, or kids that teetered on the edge of teenage-hood. We poured generous glasses of wine, loaded tiny decorative paper plates with dense dips, sturdy crackers and crunchy veggies, squished together on the couch, pulled up spare chairs, and settled in.

We erupted in laughter in the same scenes together, we shared audible silences in the same scenes together, tears leaked from the corners of our eyes in the same scenes together, and we enjoyed scenes of pure entertainment in the same scenes together. And we all wondered together, over the rolling closing credits, why Zak’s (the main character with Down syndrome) duration in underwear was deemed necessary.

Then in our post-movie review, we all first recalled the same scene together: Tyler’s adamant assertion to Zak that he stop asking him questions; there was a slight pause then Zak picked right back up with more questions. We broke out in laughter again and remarked on how our kids would do the same.

Our review continued along the same vein; how relatable Zak’s behaviors were to our own kids’. And where there were varied differences, we could still fully relate.

If you are a parent, it’s highly likely you have your own friend group of parents who have children in a similar age group.

Though your kids are fully their own individuals, you easily laugh together over shared traits; you easily share audible, thoughtful silences over certain situations, and likely enjoy the pure entertainment in others. Though each child has their own unique differences, a group of friends raising children of a certain age group can fully appreciate and relate to another’s experiences through their own.

There is running joke at our annual Buddy Walk: “Who is going to win the Buddy Walk this year?”

I’ve been to 15 annual Buddy Walks (since Wil was 7 months old). I can guarantee about 70% of the kids will either decide at some point to sit it out (more than once), run to a play structure, or take some sort of tangent. Our kids can be very quick, and cunning in their moments of escape, but typically in any other direction than the paved walk. (Some may argue my statistic is on the low side).

Laughing about our kids taking their time to get to the finish line is not a slight against them. Its relating a typical scene in our lives that we share together. Any one of us parents would say our lives are fuller for it.

So sometimes I forget when I make “off the cuff” comments like that. It’s not a familiar scene to everyone yet — it wasn’t one to me once — and we are both watching a movie of our own. When those scenes find a way to merge, I have no doubt we’ll share in that laughter together.

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Unwrapped

Wil double-stepped down the broad concrete steps. He paused. Then he threw both arms back, hinged forward at the waist, and propelled himself over the last step. Mid-air he hollered, “Jump!”

He landed flat-footed and straight-legged.

Dang, when will he ever bend his knees?

“Mom, jump!” He yelled.

I exaggeratedly swung my left arm back, but kept my right elbow tucked in tight to protect a cup of lidded coffee. I jumped and landed softly with bent knees, then lifted my right arm in an effort to match the flow of my coffee. A deep brown dribble of coffee escaped the small hole in the lid and slid into the rim. I sipped it from the rim and raised my cup to Wil.

“Woohoo!” He yelled.

“Woohoo!” I yelled back.

“They are angels.” A woman said. I spun around. She sat on one of the ornate ice cream parlor chairs in front of the coffee shop. She was dressed in full-on Kelly green. I could barely discern where her shirt ended and her pants began.

“I’ve worked with many Down’s people. All angels.” She said.

I heard Elizabeth and Katherine, as clearly as if they were there, burst out in laughter. Then in my mind I heard Elizabeth say, “Does an angel throw your favorite comb down the heat vent?”

My mom-mind immediately targeted the woman’s lack of person-first language. But like Wil’s straight-legged landing, a correction would have stolen the meaning of the moment. The woman clearly cared about the person; she cared enough to reach out to a stranger and share the ultimate compliment.

So I smiled. I listened. Then Wil got antsy. I wished her a blessed day.

Still, her comment sat like a lead ball in the pit of my stomach. I needed to reach down deep, lift it up and roll it around until I could identify what the weight meant to me.

Then I saw it…she had put individuals with Down syndrome in a box. It was a beautiful white-feathered box placed on the very top shelf, with the utmost care and kindness; but it was still a box.

I realized I had put myself in a box too; labeled: to educate or not to educate. It’s a grown habit that becomes ingrained over the years of hearing stereotypes both well-meaning and not. Of watching your child reach milestones in micro-moments, so even the slightest bend in the knee does not go undetected.

But sometimes moments are meant to be moments. Moments to take a leap and land just the way you are. Moments to accept a stranger’s kindness by her intent rather than her words. Moments to unravel what sits heavy with you, unwrap it and let it go.

If there was an angel that day, it was one who whispered the vision of Katherine and Elizabeth in my mind; filled with laughter and words to match the moment and burst open the box.

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A Dose of Happy

After coaching this AM, I pulled into our attached garage.

Wil, hearing the garage door lift, opened the side door from our house into the garage. He stood there, with his short hair a fuzzy mess, navy blue donut pj bottoms, and one of his many Buddy Walk t-shirts.

I responsively smiled at him through my car window. I shifted the car to park, lifted my hands and raised the roof. He raised the roof back. I stirred the pot, and he stirred it back. I rocked my shoulders, he rocked his and added a hip twist. I hadn’t even gotten out of my car, it was barely 7:30AM, and our day was already groovin’.


I wish I could bottle this stuff up and spread it around. Our kids w Ds bring just the right dose of joy this world so desperately needs right now.

Our kids aren’t happy all the time, but wow does Wil know how to bring out happiness in others.

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Word Up!

When Wil tries to figure something out, he has a back-and-forth conversation with himself: “Wear the grey shirt? Yes, yes, the grey shirt.” This will go on for his hat and shorts, too; and with most any task that requires decision-making.

He’s been having these conversations for about 5 years now. At first, I was concerned. He didn’t talk to himself, then all of a sudden he did — all the time. I worried these conversations developed because his peer group didn’t speak at his speed, and this was a coping mechanism to keep himself company. I did, however, enjoy hearing his thoughts, as he wasn’t always able to communicate them to me. And when he got stuck on something, I knew why.

Raising a child with a disability, you grow accustomed to digging into behaviors. Behavior is communication, but when your child isn’t capable of communicating, you put on your Sherlock cap and get to work. At first it’s something you figure out, then it becomes part of your everyday lifestyle. You don’t even realize you are doing it.

If Katherine or Elizabeth started talking to themselves, I wouldn’t think anything of it. I talk to myself out loud sometimes. It helps to clarify thoughts. And come to find out, that’s exactly what Wil was doing. But I didn’t see it because I’m always looking deeper than surface level, and not even realizing it. Wil doesn’t have the social filter that Katherine Elizabeth and I do in this area. To him, he’s simply making decisions out loud with no concern about who is listening.

Looking further into this behavior, I discovered it’s very common in people with Down syndrome, and can carry into adulthood. Now that Wil has been doing it for some time, I don’t even notice it as different anymore — because it’s not.

Today was a fun leap in Wil’s personal conversation. When he has his hands full getting out of the car, he’ll say, “Mom, I can’t do it, I don’t have enough hands!” (Don’t I know the feeling!). I’ll reply: “Sure you can!” And give him a few tips, such as tucking things under his arms, or making two trips — but who does that? Then I leave him to it. Some days he gets frustrated and sits in the car, and some days he takes my suggestions right away. Either way, he figures it out.

Today, Wil tried to get out of the car with a stack of CDs and his water bottle. Rather than addressing me this time, he said to himself: “I can’t do it, I don’t have enough hands!” Then he replied to himself, “Sure you can!”

He grabbed his CDs in a stack, opened the car door with his other hand, then got his water bottle, and bumped the door shut with his hip.

Now you’re talking, Wil! 😀

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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.

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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