I pulled up in the driveway at 7:45AM after coaching. Just as I was about to exit my car to go inside our home and check on Wil’s readiness for school, he ran outside and into the car!
He was fully dressed, complete with his hoodie, backpack and even socks (which sometimes prove challenging for him to put on) under his Crocs.
Ever since Wil chose to set his own alarm and get up and ready for school on his own a few weeks ago, he’s been gaining momentum by the day. At first I had to nudge him with a few things. Today, Wil whittled it down to zero nudges, with a bonus of him walking outside to meet me (rather than my coming in to meet him).
Last year he simply wasn’t ready for this next step. There were too many “stuck mornings.” But in true “Wil fashion,” when he’s ready the next step turns quickly into a leap. It’s like what was once stuck is now a well-oiled locomotive that quickly gains forward momentum.
I’ve learned over the years to take Wil’s milestones a day at a time. To not look too far ahead; and yet to keep trying and never give up. Because over and again his readiness builds ever so silently under the surface, and when it emerges for us all to see, it’s like BAM! Here we go!
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 🙄😂
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.
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!
I saw it in his eyes. He wanted to bolt. If he found a crack in the crowd, he’d force his way through like a flower through a concrete slab. At 5’5” and 155 pounds, clad with big blue noise-cancelling headphones, people would step back startled and stare, walk around and give him space, rather than stop him.
And that’s what scared me. Where would he go? When Wil is overwhelmed in a store he bolts straight to the parking lot. He knows exactly where our car is parked. If it’s locked he’ll stand right by it. But in that state, he may not watch for passing cars.
He escaped the eyes of about 20 mothers at Crisler Arena (home of University of Michigan men’s basketball). “But he was just right here!” a startled mother said. “That’s how he does it!” I replied as we all split up to find him. A Crisler Arena employee, once I alerted her Wil was lost, spied him on the security camera. He had located the exact doors we entered, and was just about to exit the building. He was in hot pursuit of our parked car.
Today, though, we weren’t at a store. We weren’t at Crisler Arena. In fact, losing Wil at Crisler was child’s play compared to this venue. We stood upon hundreds of acres of farm field amongst 20,000 concert goers. Our only land markers were identical lamp posts installed for the concert with identical colored square boards tacked to the top of each lamp post. The colored square boards differed only by the number printed upon them, but it was highly unlikely Wil paid any attention to that. The gentle rise and fall of elevation erased any purposeful sense of direction I tried to hold onto. By the time we neared the ticket-taker, I knew only that our car was at least a mile away in the general vicinity of stage left.
I talked to Wil softly, reminding him how badly he wanted to see Luke Bryan. How special it was that his sister Elizabeth and friend CJ, and CJ’s mom, Cheri, were there too. That Riley Green was opening and he’d get to sing with Riley to, “I Wish Grandpas Never Died.” That we just had to get through the ticket-taker, and there would be loads of room to spread out and find the perfect spot. I knew Wil wanted to believe me, that he wanted more than anything to be with the country artist he listens to every day; is a fan club member of, has 2 pillows of and multiple t-shirts of, knows what town he lives in, the names and ages of his wife and children, including his adopted nephew and nieces, and every lyric of every song. I tease Wil that if there was a category on Jeopardy titled “Luke Bryan,” that he would take down the entire column against Luke Bryan himself.
Cheri and her son, CJ who is 2 years older than Wil and also has Down syndrome, were being pushed further ahead of us as Wil held his ground looking for an escape route. Elizabeth did her best to block any means of escape for Wil. Elizabeth and Cheri know how this goes; when our boys have their minds made up, there is little to stop them. I kept my eye on Cheri’s pink shirt and my body only inches from Wil’s. There was no cell phone reception.
“Can I help?” I turned around. He had a very light shade of red hair. I noticed his female partner had the same shade of hair color.
“Yes, please! I so appreciate you asking. It helps to break the spell when it’s anyone but mom.”
The blond-red haired man leaned forward to get Wil’s attention. His partner smiled kindly. They drew Wil in with questions. I don’t remember the questions they asked Wil, but I do remember the gentle, calming kindness with which they asked them. I could both see and feel the grip of overwhelm loosen within Wil. Not fully, but it was enough.
The crowd pushed forward and we started to separate from the couple. I knew Wil would quickly revert. But just as I was having that thought, a man directly to my left, that must have been there for some time but I was so absorbed in Wil that I didn’t notice said, “We will get you guys through tickets. I’m Paul. This is my wife Erica, and my twin boys Mark and Mitchell.” Then Paul, in a sideways comment to me said, “Hey, my cousin is missing a chromosome!” We shared a chuckle.
“Hey Wil,” Paul asked, “how old are you? These are my boys. They are fifteen.”
“Wil, they are the same age as you, how cool!” I said trying to keep Wil’s attention on anything but escape. “And Wil’s sisters are twins! This is one of Wil’s twin sisters, Elizabeth.”
Elizabeth, Paul and his wife, Erin, then struck up a conversation. I was thankful that the focus could now be on Elizabeth for a change.
Paul kept to his word and stayed with us. Wil never fully relaxed, which meant nor did I, but again it was enough to keep us moving forward. We made it through the ticket-taker (halleluiah!) and the security guard actually gave me a hard time for the bag I had (it was a big open bag with no pockets or compartments). I politely pointed to Wil and said it simply wouldn’t be safe for me to carry two lawn chairs, two jackets and keep tabs on him (most people, I’ve found, aren’t trying to be difficult, they simply don’t know). The security guard called his manager over — a huge, imposing man — who upon seeing us, gave us the hugest, heartiest smile and waved us on.
“Sorry, just doing my job,” the security guard said.
We broke way into the concert area and the crowds dispersed like a dense flock of birds exploding from a tree into the sky. Wil visibly relaxed in the open space and recognition soaked in.
Wil and I attended Luke Bryan’s very first Farm Tour in Fowlerville last year. We arrived later in the day, so didn’t have the experience of the crowd. However, we were backed up in traffic for over two hours which led to it’s own set of challenges. Armed with last year’s knowledge, and companioned with Elizabeth, Cheri and CJ, we were in a much better situation. Even so, there are some hurdles that must be crossed to get where you want to go.
Paul said that his family was meeting a large group of friends and we were welcome to plant our lawn chairs with them. He said that way I could relax as there would be many “eyeballs” as Paul put it, on Wil. I smiled, thanked him, and chose not to share the Crisler Arena incident.
We did in fact plant our lawn chairs with Paul’s friends and I felt more of a sense of ease. Every single person in the group was friendly, welcoming and clearly there for a good time, but Cheri and I always had one eye on CJ and Wil. CJ made a few attempts to make his way, on his own, up to the stage. He was unconvinced as to why he couldn’t go up there. He holds his own weather report on YouTube every day, and plays baritone with his high school marching band. He lives on the stage. In one forward attempt, he walked up to a pretty girl dancing and asked her to dance with him. She jumped at the chance, and even her boyfriend, who’d been standing still as a statue, broke a smile and busted a move.
Paul leaned over and said to me, “It’s a beautiful life, but I know you have challenges. Please know that you sharing Wil and CJ with us is a gift.”
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.
'WIL'ingness = Willing to Embrace Extra in Life 