“Oh, me either.” Replied another. Both shared their own beliefs for saying so.
I found myself bristling. Actually jealous. And how silly of me. Who gets to choose how long they live? But what I found myself upset about was how they could take this longevity for granted. I have a child, that even as independent as he becomes, will always be vulnerable. Always.
Who will look after him when I’m gone? Katherine and Elizabeth have already volunteered, but I’d like them to have their own independent lives as long as possible. To grow into their own adult lives without the concern of caring for their brother until they are much older.
I thought deeper on my internal reaction. If I had said something out loud, they would have apologized profusely. It would have turned the light-hearted conversation into something deeper. They would have been “educated” but would have felt “bad.” These were not people who needed to be educated. They understand Wil and love him. But they aren’t living this daily life like I am. There is a time for educating, and there is a time for not educating.
There is absolutely a lack of awareness in what we do as parents of our kids. All of the extra work involved, the daily aspects of life we must consider, and the future aspects of life. Sometimes we just get tired. Tired of explaining; tired of people not understanding. Not because they are bad people, they simply don’t know. With all of this within us, it’s easy to get angry when people simply don’t know.
I have worked with many “new” people who don’t have the knowledge I do, but they put themselves in the crosshairs of tired parents to learn. Rather than beating them down for not knowing, I am grateful they chose a profession of helping.
When Wil was in preschool, his speech therapist didn’t have much experience with Down syndrome as just previous to Wil entering school the kids with special needs went to Chelsea as they had a developed program. I could have gotten frustrated with their lack of knowledge, but instead we watched the videos together, and learned together, and I’m very grateful to say this speech therapist and I have a very strong bond, and she works with Wil in high school now. The colloaboration and learning together, has been a huge asset in Wil’s life and in his success to this point.
Even when you are challenging a boundary, have respect where another person’s ideas are coming from; ask questions rather push your agenda. Find ways to collaborate. Certainly there are those out there that don’t care. Or even worse, those that pretend to care, say what you want to hear, then go do their own thing. It makes my stomach drop.
But as Mr. Rogers said, look for the helpers. I could have wasted my time beating this person down, and those fights are necessary, but I have found focusing on the helpers is what gets Wil what he needs. I put my focus on collaborating with them. Growing my relationships with them. Showing my gratitude for them. And through all the bumps, the helpers have stuck by Wil and my sides.
We all have things we fight for. But some fights aren’t worth the energy. I’d rather choose my moments to decide when bringing up certain things are just for a fight, or are they truly worth making the change.
No one knows enough to know everything. You or anyone else. I have just as much a duty of being open as anyone else. I’m not more “right” because Wil has Ds. And just as much of a duty to listen and understand where others are coming from instead of always pushing my agenda. But I do have a duty, like any other mom, to raise Wil the best I can. And I would love for him to be a helper, by being a collaborator and realizing he doesn’t stand on a special pedastal just because he has Ds. He stands there because he was a good person.
Though the questions remain static; our answers come from different places.
****
Last night Wil and I drove to Elizabeth’s basketball game in Bedford (just north Toledo). A dark sky, flat un-scenic roads — minus the occasional Christmas lit homes — and nearly a full week of school put Wil to sleep quickly.
Wil remained upright in the passenger seat; his neck stretched to the right at 180°, head at rest on his shoulder. (He can also fold himself in half — thanks to low muscle tone — chest on thighs. It was the seatbelt, not his flexibility, that prevented this sleeping position.)
When Wil woke we were 20 minutes away from Bedford High School. He looked out the passenger window. Same dark skies and flat roads. “Too long, Mom.”
“I know, Wil. Almost there.” I knew the basketball game would be a challenge for him with the loud buzzers. He’d been to enough games to know that too. I gave him the choice to stay home with Matt. But he wanted to go. To cheer on Lila, his friend since grade school. She had aged up to play on the varsity team with Elizabeth.
When we arrived at Bedford High School, I was heartened as Wil entered the school with no hesitation. (There are times when he’s very excited to do something, but when the time comes he has second thoughts.)
The entry doors opened to a long hallway that led to the gym. About halfway down the hallway Wil stopped. “Headphones, Mom.”
I set my briefcase-sized purse (for such occasions) on the ground and took out his noise-cancelling headphones. Wil took off his hat and we made the exchange.
As we were ready to regain our progress, a custodian walked by us. He looked friendly so I jokingly said to Wil within the custodian’s earshot, “We better hurry or he’s going to put you to work.”
(Though I wasn’t conscious of it at the time, writing this now, I realized it’s become a habit in me to keep situations as light and upbeat as I can when there is an opportunity for Wil to become over-stimulated.)
“Oh, yes,” The custodian said and smiled. “And there is a lot of work. I just finished cleaning the ceramics classroom. That’s the most challenging. Scraping clay off the ground. Every day.”
The three of us chatted our way down the hall; our moods remained light as I hoped with this friendly interaction. Wil and I parted ways with the custodian and peeked into the gym. There was a stack of bleachers about four-high from the gym floor. There was also a second floor balcony with about 20 rows of seating. I suggested to Wil that we go to the balcony; the buzzer noise would be lessened.
But then Wil saw Steve, Lila’s dad. Wil adores Steve and ran into the gym to sit with him —only feet from being directly under the buzzer. I followed and thought, well, the more Wil is able to tolerate the buzzers the better (as most of us game-goers do — tolerate buzzers).
The game started, as did the buzzing and announcements over the loud speaker. When the second period was over, so was the honeymoon period of Wil’s chosen prime seat next to Steve and cheering on his friend and sister. Over-stimulation had taken over. I suggested we take a walk.
It was quiet down the long hallway. We took note of the artwork on the walls as we strolled; when we reached a line of the custodian’s trash pails blocking our path, we turned around and slowly made our way back, stopping at a bench for a seat. Wil sang an a cappella version of Luke Bryan’s “Whatcha Doin’ a Little Later On?” In the song, Luke imitates a high-pitched woman’s voice in her response to his titled question; of course, Wil does the same in his a cappella version. We always laugh when Wil hits that high range. In the car, or at home, I sometimes join Wil; the more obnoxiously high-pitched we can get the better! But I wasn’t as brave as Wil to do so in a school hallway, even being the only ones there. I laughed with him on his high notes, and his bravery, and marveled for the thousandth time of how he knows the purity of fun, and I have a standing first-class ticket to join him.
When it was nearly time for the second half to start, it was time to get back to the business of re-entering the game. We walked back toward the gym. About 15 feet from the entry Wil made an abrupt stop. I sandwiched my body behind his and wrapped my arms around his chest. I gently moved forward, which in-turn moved him forward, in baby-steps. He laughed at first, but after a few steps he stood firmly in place. When I tried to push more, he bent his knees which meant he’d take a full seat on the ground if I kept it up. I suggested we go to the second floor balcony and this time he agreed.
There was a large landing at the top of the stairwell with a window. To the right of the landing were propped open double doors that led to the bleachers overlooking the basketball court. Wil walked to the window and looked out. Then walked back to the top of the steps and took a seat near the wall with his feet on the first step.
“Do you want to stay there?” I asked.
“Yes, Mom.”
The stairwell was divided in the middle by sets of railings. Each railing would span about 3 steps, with an open step so you could cross to the other side, then the next 3 steps would be railed with an open step. I saw the logistical wisdom of this with Wil seated at the top. He was next to the wall so people could easily walk by him, but sometimes people would cross over to the other side giving him space.
Teenagers, individually or in small groups, were in almost constant flow up and down the stairs. I mused over a commonality I witnessed; each teen gave a slight pause of surprise at the sight of the blond teenager with noise-cancelling headphones at the top of the stairs, then resumed their conversation and pace up or down the stairs; sometimes crossing over to the other side, and sometimes walking by him. Just business as usual.
During one of the game’s time-outs, the song “Low” was played, which Wil loves, and he continued singing it on his own. The teenagers traversing the stairs gave no more pause than before.
I saw not a single prolonged stare — not a single one —that indicates the processing of something strange or unusual. Every pause, and I’ve become an expert at identifying pauses (and smiles for that matter…I can discern a friendly smile, or a smile of pity, in .001 seconds flat). These teens paused only long enough for their brains to say, hey! Something is happening that on a typical day isn’t. Oh, it’s just a guy sitting on the stairs. Onward.
From the second floor landing, I watched the game through the propped open double doors. I could see one of the nets and about ¾ of the court. To the far right of my view, standing at the railing and overlooking the court, stood a man and who I guessed was his teenaged son, their backs to me. They talked almost constantly, one turning their head to talk to the other, then back to the game, then turning their heads to one another, then back to the game.
I admired their ease with one another. How this father never in his life gave thought to his son sitting in the stairwell and refusing to walk into the game. How they enjoyed the flow of conversation between them, taking this moment for granted without even realizing they were doing so.
Then I looked at Wil, singing “Low” — he rocked to his own beat, his blond hair poked up over the ridge of his noise-cancelling headphones. He looked absolutely adorable and I was flooded to almost tears with my blessings. I, too, take many moments for granted without even realizing I do so. In a span of less than two hours, I experienced multitudes of small-big happenings that are easily overlooked or not even noticed at all; but raising a child with Down syndrome these moments are highlighted in bold bright colors.
****
I’ve never been skydiving so I looked up how skydivers describe it: “Skydiving is quite breathtaking and gives you a refreshing, incredible perspective on the world.”
The word hard never came up. It’s much too expansive of an experience.
Wil attended his first taekwondo tournament last Saturday. The environment had the potential of causing sensory distress within Wil. I had been to many taekwondo tournaments in the past with Katherine, as she worked her way up to a blackbelt. There would be many people moving around on the gym floor, and spontaneous announcements over the loud speaker —both high sensory triggers for Wil. (Though we have a large dog, Wil is leery of other dogs because of spontaneous barking. The same goes for babies crying, sports announcers over a microphone, and events like pep rallies where crowds and loud noises erupt without notice).
Wil, however, has grown in his ability to manage sensory distress. He’s become more self-aware and only wears his noise-cancelling headphones when he feels it’s an absolute necessity (he still won’t walk into a movie theater without them). He also loves taekwondo. He thrives on his independence in the taekwondo classroom, and also being with his friends, Alex and Nick, who have been practicing taekwondo for years. He looks up to both of them, and works hard to achieve their level of mastery.
When Senior Master practices form with Wil, Wil pays close attention. With his desire to do well, mixed with his growth in sensory rich environments, I knew the tournament would be a challenge for him, but a challenge he would deeply want to rise to.
When we arrived at Saline High School where the tournament was being held, there was a long line out the door. Wil held his excitement throughout the wait for the tournament ahead. The line moved quickly and one of the Masters at the front desk welcomed Wil by name and gave him a high-five. Wil gave him a hearty high-five in return. We were off to a great start!
We made our way down to the high school gym. Wil paused at the entry taking in the crowds. The set-up was the same as Katherine’s past tournaments. There were multiple squares of black mats, parallel to one another, with narrow walk ways in-between. Each square had a pole with a number attached to the top. As Wil’s “Special Abilities” hadn’t been called yet, I suggested we wait by a mat with fewer crowds. I took Wil’s big gear bag from him, so he could more easily maneuver his way, and we walked to the far side of the room where it was less populated. Wil stood against the wall, and I could feel him stiffen by the look on his face. But I also knew he was determined to be brave.
I attempted to break his tension with discussion about Alex and Nick. He nodded but became increasingly quiet. Even if I couldn’t see it, I knew perceptively that the tension within him was rising above his ability to manage it. I suggested we walk over to the bleachers but he shook his head. I pointed to open seats at the very first row of bleachers; I said we wouldn’t even have to climb the stairs. We could just sit and relax for a moment. He started taking little steps away, and I knew it wasn’t to sit on the bleachers. He was plotting his escape. When he took a forward step, I took one with him. I took his hand but he shook it off.
To any outsider watching, when he decided to bolt out of the gym, it would have seemed sudden. I dropped his gear bag on the spot. With the narrow walkways and crowds, I would have knocked someone over with it chasing Wil. I had no idea where Wil was going, and I didn’t want to lose him in the high school, or worse, the parking lot.
He exited the gym and took a sharp left down a long hallway. Closed double doors blocked further progress, so he took a seat in the corner between the double doors and the wall. He curled his knees up to his chest and wrapped his arms around them.
I crouched down to his eye level and talked quietly to him. He dropped his head to his knees. I knew he wanted to be in the tournament. I knew he was disappointed in running away. But he didn’t know how to get out of his emotions.
I reminded him that Master would be excited to see him. I reminded him that once he got on the mat he would be having so much fun, he’d forget everything else. Then I sat down and stayed quiet. I knew he also needed time to process everything. As hard as I tried, right now the moment was up to him.
And inside of me, I had reached my limit too. In efforts to keep Wil calm back in the gym, tension built within me. Would he run? Where would he run? Was I saying the right words or was I making it worse? Do I make him stay? Do I let him go? Do I just kept my mouth shut? Time always gives us the answer, but in situations like this time wasn’t on our side. Wil’s “Special Abilities” division would be called when it was, whether Wil was ready or not.
I was growing increasingly frustrated with myself, mixed with a sadness for him. Here we were, Wil 15 years old, and I’m sitting in a hallway with him. Will this ever get easier? Will things always be this struggle of wondering what will happen? Will I always need this patience and forethought with everything we do?
I know from experience that each tournament will be better. That Wil will know what to expect from his own experience, and we can talk about it with growing effectiveness. He can tell me if he wants to go, or not go, fully understanding the environment he’s walking into. When Wil feels ready to compete in a tournament, it will be the best day ever as we’ll both have grown from this very experience.
But that’s for another day and another time. Right there and then in the hallway, there is no sugar-coating it. It was just plain hard.
I asked Wil if he wanted to go home. He said yes. I told him I couldn’t go get his gear bag without him. That he would have to walk back through the crowds with me to get it, but that we would go right back out to the car.
So we walked back through the gym and grabbed his gear bag. I gave him credit for being so brave to walk back in, and I meant it. I knew that would build strength in him for next time. On our walk back out of the gym I heard my name called. I looked up into the bleachers and saw it was Eleanor, Alex’s mom. She was sitting with Alex, Nick, and Nick’s dad, Jeff. They waved for us to come up and sit with them. I felt envious that Alex and Nick were sitting up there, but we were about to leave. I swiped my hand across my neck symbolizing it was over for us. Eleanor’s nod back to me was like a big hug. She understood exactly what we were going through even though words were not exchanged between us.
Wil and I made it back to the car. I let the tears go silently, so as not to upset Wil, and started the car. As per usual, Wil took my phone out of my purse and clicked on the Amazon Music app, found a Luke Bryan song (right now he’s into the Spring Break album) and started singing with Luke.
It was hard to imagine Wil shrunken in hallway corner moments before as he belted out the lyrics to “Spring Break-Up.” It wasn’t that he’d already forgotten — he’d remember every detail. But to him that moment was over, and a new moment had begun.
I had more tears to let go first, and then I’d be able to move on. I guess we all have our own processing time.
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'ingness = Willing to Embrace Extra in Life 