Christie Taylor is the creator of the website, www.WILingness.com, and author of "Stories of Wil: Puberty Part 1" (Amazon.com: amzn.to/30mFoZ5) Christie believes that if we all had the opportunity to spend a day with our loved ones with Down syndrome, many of the stereotypes and stigmas would dissipate. Christie invites you, through her stories, to spend a day with Wil. The more the merrier!
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.
“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.
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.
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.
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.
As Wil gets older, fewer and fewer opportunities are available to him. The summer can be a very challenging time for our children with Down syndrome; at any age.
Few summer camps or learning opportunities are available. If our kids do qualify for extended school year, it is typically a few hours for a few weeks of the summer (thank you to all the teachers who stay for summer ESY!!!).
For this reason, our Down Syndrome Support Team decided to run a summer therapy program. Our president found 2 amazing speech therapists, 2 amazing occupational therapists, and 2 amazing special education teachers to provide tutoring over the summer. Wil and his friends thrive each summer within this program. Both for the consistency in schedule they provide, and the education with peers with Down syndrome.
But these resources come at a cost. The support of our annual Buddy Walk is what makes this essential learning possible for our kids.
It’s not so simple to sign our kids up for classes like dance, gymnastics, ice skating, taekwondo, etc. as many of our kids need extra support in this area. These venues either are not equipped, or not able, to offer support, so again our kids are lacking the social and physical opportunities they need. It is the parents within our support group that seek out places that will offer this support, or create classes on our own. Our annual Buddy Walk again is a place where we create community and grow resources for our kids.
As Wil gets older, and his needs change, I rely on the support and understanding of fellow parents in this journey as much as I did in the early days; just in a different way. I can not do this on my own. And I don’t want to do this on my own. We all lean on one another, and grow stronger with one another.
You showing up to walk one mile with us at the Buddy Walk means so much to us and our kids. Thank you to all who support us in any way you can! Your love is definitely spread in the best of ways!
To join us this year, you can pre-register online (t-shirts guaranteed to those who register by Aug 23rd), or at the event starting at 1:30PM. Hope to see you Sunday, September 25th!!! See Wil’s link below for more info, or feel free to message me with questions.
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.
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.
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.
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.
'WIL'ingness = Willing to Embrace Extra in Life 