Yesterday, checking out at the grocery store, the grocery clerk commented on the cupcakes I bought. I said the cupcakes were for my son’s classroom for his birthday.
The grocery clerk asked how old my son was. I replied that he was my baby, and it was hard to believe he was already 16 years old. I shared that he has Down syndrome and his Life Skills class really enjoys birthday celebrations. She nodded her head silently and continued to check my items without another word. Ugh, I thought, I overshared.
After that pregnant pause she said her baby was 35. She went on to say her son was recently diagnosed with Schizophrenia. But he didn’t believe he had Schizophrenia; that everything happening to him was real. He was in the hospital, so at least they could be sure he took his meds, but when he got out, she’d be the one to ensure that.
Wow, you just never know what people are going through. Here I thought I shared too much with the grocery clerk; but rather unknowingly created a vulnerable space for her to share what was heavy on her mind. Though it was heavy, in a way we were both lifted by that encounter with one another.
I shared with Wil’s friend, that during the snow days off school, “Wil and I played with these big blow-up things that you put over your hands and then punch each other with.”
Wil interrupted me with a flat-toned, “They are called Socker Boppers, Mom.”
Wil is at a stage where he reads everything around him — even the words printed on the big blow-up things that you put over your hands, that I clearly took no time to read. But when you discover you can read about anything around you, then that’s what you do!
So within that one sentence Wil interrupted me with, I felt elation for his high interest in reading everything around him, mixed with an internal chuckle over his very typical teenaged eye-roll comment.
Life may be found in the present moment. But I have also found that observing the progression of moments over time fill the present with more life.
I remember, when Wil was a brand new baby, I walked into my first Down Syndrome Support Team (DSST) meeting. Young kids with Down syndrome were running around playing like young kids do. Everything was so normal, and yet it wasn’t to me, because all these kids had Down syndrome. I went home, though very supported by the parents, crying my eyes out. My mother-in-law, who was at our house watching the twins (who were not even 2 years old yet), asked how it went. I broke down crying again. My emotions felt too big to process.
Yeaterday, at a DSST teen event, our kids acted like…you guessed it, total teenagers. They went between competitive games of pool, foosball, and Apples to Apples, to being cool and aloof. We finished the event with a dance party, and our teens got down like James Brown! I went home floating on a cloud.
What was the difference between then and now, other than age? Its the same, but also not. And in the process of learning the “not” I fell in love with the whole.
And when you can embrace the whole, there is an elation with a depth to it. Kind of like a James Brown charasmatic scream 🙂
I made Wil’s breakfast and busied myself in the kitchen awaiting Wil’s typical wide-armed entry into the living room with a hearty, “Look at me, Mom!” (He takes great pride in his clothing selection each day.)
“Oooo, fancy!” I’ll reply. This morning, however, just enough time had passed to suspect something was wrong.
“Do you need help, Wil?” I called out from the kitchen. I received no response.
I walked into Wil’s bedroom. He sat on the floor, shoulders slumped, still in his pajamas. The underwear drawer hung open in front of him.
“Wil, you have underwear in your drawer.” I picked up a pair.
Wil put his hand up. “No mom.”
“What’s wrong. Do you want a different color?”
“My new underwear, mom.”
“Oh, I have some in the dryer. I’ll be right back with them.” (I recently bought Wil new bamboo-based underwear for his skin sensitivity.)
I returned to Wil’s bedroom and playfully tossed him 2 pair of underwear in different colors (I was trying to keep the mood light. I didn’t know if this was simply about underwear or if it was a deeper problem.)
“Two pair!” He exclaimed as he caught the underwear. I relaxed. It was just about underwear.
“Hey Wil, thanks for telling me what was wrong. That way I could help you. See how easy that was? Next time, just come and tell me what you need. If you tell people what is wrong, then they can help you. Otherwise we just don’t know, and then we don’t know how to help.”
A short 2 years ago there is absolutely no way I could have had this conversation with Wil. He would have stayed on the floor without a word. His shoulders would have slumped further, and any more words from me, no matter how reasonable or helpful, would not be reasonable or helpful to him. More words would drive him deeper into his frustrated state.
A short 2 years ago I would have sat next to him, and maybe even silently cried because we had so many such mornings. Like many teenagers, hormones and body changes put him in challenging moods, and with a communication barrier I had to guess at the reasons for his upset.
Different underwear than what was in his drawer would have been the last on my checklist of guesses. Because school was challenging for him at that time, my mind would have leapt to problems at school. I would have become increasingly upset and sad for him. I then would have texted his paraprofressional (who is wonderful!) and probed her for any clues as to what may have been setting him off. We both would have poured over recent events trying to discern what was wrong so we could unravel it for him.
And yet, for all our surmising, the solution was a different pair of underwear.
And so, this very morning, I was the happiest mom on earth. I had a conversation with Wil, and Wil responded back to me. His back step of getting stuck with lack of communication was also a forward step in expansive conversational communication.
Over and again, Wil reminds me that what seems simple on the surface often is not; and what seems complicated on the surface often is not. And that no moment — be it simple or complicated — is to be taken for granted.
Last night I gave Wil a hug before bed and as a joke he blew on my cheek. I started laughing, and he started laughing. He kept trying to blow on my cheek again and again but each blow was interrupted by his uncontrollable giggles.
This is the magic that you don’t know; that you can’t know, when your world is shattered by a diagnosis. This kind of story would not fill the void you feel until you walk the walk each day to the other side. That’s when every day is filled with pieces of magic, and you can’t help but cheer for the life you have now with each interrupted giggle.
One of my favorite parts about Special Olympics events is when I thank the volunteers for their time, and they say, “No, thank YOU! We are so very thankful for this opportunity.” And in further discussion you find they volunteered once as a “good deed” and now it’s 20 years later and they wouldn’t miss it.
Many of us seek ease as happiness; or to step in for the sole purpose of a “good deed” to check a “feel-good” box without deeper intentions. But when we make a choice instead, to dive under the surface, to see what this “other life” really and truly means, we find the challenges are actually beautiful in their own way. It’s a new adventurous world that cracks open our hearts in a way we didn’t know possible. Like the Grinch’s heart expanding outside of his chest. But he too had to dive off his own hill with one intention, only to come back with a whole new unintended perspective.
Life can be deeper if we allow it to be. It’s up to us to make the dive.
Most of us don’t choose to be caregivers. Then next thing you know, you find yourself standing on a house of cards.
Last night a friend was at a neighboring table for dinner with her husband and another couple. After they had eaten dinner, the other couple left. As our friend tried to leave, her husband refused. As he’s endured multiple severe health issues, life circumstances now have our friend in the dual role of wife and caregiver. He wouldn’t leave because he’d forgotten he’d eaten dinner, and thought his wife was trying to make him leave before eating. Try as she might to convince him he’d already eaten, he sat steadfast.
Though the differences are many, I saw many parallels in Wil’s determination not to be swayed and our friend’s husband’s determination. I intimately knew the tears in her eyes. I felt her frustration not of just that moment, but of all the moments built as carefully, patiently, diligently and lovingly as a teetering stack of cards; that in just one moment, comes falling down.
After the cards collapse a number of times, you just feel so tired of it all. All of those cards, all over the floor, and one by one you must build them back again. Sometimes, it goes smoothly, and sometimes that one card keeps falling so as it’s impossible to build on it.
I knew this cycle with Wil. The only two solutions our friend had at this point were to wait him out until he decided for himself it was time to go (which could be hours) or a fresh voice to break the spell (as the caregiver’s voice is heard so many times, pleas can fall on deaf ears). It is a new face, or a new voice, that often breaks the spell.
My dad was the one who stepped in, and I looked at our friend, our eyes connecting in a knowingness. It’s hard, and no one asked this kind of hard, but there is so much love here, so much that we’d do for our loved ones, that makes the hard parts both more challenging, and yet strengthens us at the same time. And when friends step in to help, the wobbly card steadies and we can start building again.
Just before the holidays, a member at work shared with me that she was bringing her mother, who has dementia and lives in Florida, back to Michigan for a visit. She said, “Though Wil and my mom have many differences, I now know how you feel when you fly with him. You just don’t know if they will cooperate or not, so you prepare the best you can. Then you find out there is always something you didn’t think of, and things fall apart. And other times things go so smoothly that you wondered how you worried at all. You just don’t know.”
While visiting my parents in Florida, Katherine, Elizabeth, Wil and I went to the Naples Zoo. Wil gets hot easily, so we went on the coolest day. When he grew tired and too hot, I found an area by the zebras which was shady and he really enjoyed. Though Wil is very capable of walking the zoo for the day, its his building overstimulation with the heat, with the crowds and with the animal noises that eventually get to him.
Every year I find ways to keep him at the zoo longer. Every year I learn from the previous year. But I never let him sit it out. Because every year Wil learns how much more he can do. I’m fortunate that the twins can walk off to enjoy the zoo on their own, and circle back to Wil and me, instead of stopping every time Wil and I do. They know how this works. We build the house of cards together.
When Wil finally hits a wall after stops and starts, he still has to make his way back to the zoo entrance. As this zoo is near my parents’ home, they are fortunately available to pick Wil up when that “wall” is hit. I sit with Wil as long as he needs me to, as his will to walk to the entrance is his only way out.
We don’t choose our situations; they choose us. But we do choose how to utilize the time within our situation. We do choose whether to keep building, even after the cards have fallen. When times get hard, locking tearing eyes of understanding mean more than words could ever convey. They give us strength to build again and again; as many times as it takes.
Internal victories are what carry you and lift you through the hard times. Even 30 more minutes at the zoo on this visit delivered an internal joy with iron-clad strength—a strength and joy that will not fade with time or circumstances. I can build a million cards with the super-sonic strength of 30 extra zoo minutes many take for granted.
Caretaking is unpredictable and challenging, yet it brings out our best, and brings us all together if we allow it to. It’s what humanity is all about. (But if you challenge a caretaker to a house of card building game, they will mercilessly kick your ass.)
“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.
'WIL'ingness = Willing to Embrace Extra in Life 