There’s Just Something in the Atmosphere

Over the years, I have found it less important how people approach Wil than how they have left an experience with Wil. Wil demands a shift of heart without demanding it at all.

I’ve been involved in our Down Syndrome Support Team’s annual Buddy Walk since Wil was 7 months old. Many walkers who attend this event are long-time attendees such as myself. And it is no surprise why. When new friends attend, a look of awe crosses their faces at the sheer uplifting feeling of it all. You may say it’s the music from the band, mixed with excitement from the silent auction, heightened with a sugar-high from the cotton candy. But I know it’s something far less tangible than that.

I do not know with what expectations or intentions people walk into our event, but I do know the feeling with which they walk out. And that they will come back again. There are no strangers at the Buddy Walk. Each and every participant is folded in like family no matter where they have come from or why they chose to attend. Come as you are and you are accepted as you are, no matter your level of acceptance. Though a welcome banner announces the entry, it is the atmosphere that invites you in. You may have no musical talent but pick up a guitar, the bongo drums or a tambourine and you are part of the band. You may have two left feet, but you will meet a favorite dance partner as soon as you step foot on the dance floor if you aren’t pulled onto it first. You may have been part of the Buddy Walk for years or just walked onto the scene, but you will be received with open arms and a mighty hug just the same. It’s just how our loved ones with Down syndrome roll. 

The Buddy Walk lives on in whoever has attended the event. But you needn’t have attended the Buddy Walk to know of the atmosphere with which I speak. It is our loved ones with Down syndrome who create this atmosphere and live their lives in it. And like any atmosphere, it knows no boundaries.

I’ve seen kindnesses emerge from a multitude of strangers upon entering the atmosphere Wil lives in. I have literally felt the shift in people. Not once or twice, but on a daily basis. Tight-lipped strangers visibly loosen – their eyes become softer, their shoulders relax and my personal favorite is seeing an unconscious smile spread across their faces. As they walk past us their smile holds on. You can’t smile on the outside without feeling it on the inside. 

I can try to teach a belief system about acceptance of our loved ones with Down syndrome until I’m blue in the face. But the atmosphere created by our loved ones with Down syndrome meets everyone exactly where they are, accepts them as they are, and gives rise to a new level of understanding without a single teacher at the lector. Our loved ones with Down syndrome demand nothing less of us without demanding it at all.

Steps to Independence

I walked Wil into his first day of camp, then I walked back to my car. I shut the car door and cried for 5 minutes straight.

I couldn’t stop seeing Wil’s face in my mind. His big, wide eyes looking up at me above his mask. I knew that look. He was trying to be brave. He was trying to do what I wanted him to do. He was trying to do what he wanted to do. To do camp by himself. But he was scared. The innocence and trust in his eyes is so pure. It’s beautiful and terrifying at the same time.

Wil was all a bundle of joy on the drive to camp. Country music a-blaring, he was bouncing in his seat and yelling his songs out the window. No matter it was 19 degrees, the music in him was too big to be contained within the walls of the car. It needed to be released into the winter air.

He was most excited about his lunch. We stopped on the way to camp to pick up a Lunchable to pack along with the carrots, cheese, crackers and water bottle I packed at home. The Lunchable was a special treat – he chose the ham & cheese sub with the little Pringles packet and 2 Oreo cookies.

With weeks of virtual school, and now Christmas break, Wil’s mojo has slowly been declining. Wil is an energetic kid by nature, and I am very mindful of nurturing that energy. Wil has low thyroid, so it would not be hard for him to fall into sluggishness. For both physical and mental health reasons, it’s key to keep his energy high. And I know, personally, how physical and mental health go hand-in-hand.

For Christmas, Wil received a mini-trampoline and Luke Bryan CDs. I knew he’d love jumping around to his favorite country singer. I also bought one Luke Combs CD, because I knew Wil would want me to take turns with him jumping to music, and Wil has me about burned out on Luke Bryan! (Wil is agreeable to adding Luke Combs, Alan Jackson, Blake Shelton, Johnny Cash, Zac Brown and Kenny Chesney to his music selection on occasion). 

When I came across an email that the Saline Rec Center was having a winter camp, I read into it further. Then my heart sank when I read the age group was for kids ages 5 through 12. I knew Wil would not want to be with the 5-7 year old children, as he’s very much a teenager, but I also knew he’d enjoy the activities the 10-12 year old’s would be doing. As Wil is 13, I thought the camp director may make an exception. No hurt in asking, so I did. 

When I called the camp director and mentioned that I had a 13-year-old son with Down syndrome I’d be interested in signing up for the winter camp, her first questions surrounded Wil’s interests. This may sound routine, but whenever I mention Wil has Down syndrome, the first questions typically surround what his limitations are. Let that sink in a minute…when you are asked about your child, are the first questions about what they can’t do? 

Raising Wil, there are multiple micro intricacies like this that pop out in our daily lives. Many times, people are not being unkind, it’s truly a matter of not knowing. And you don’t know until you do know. I just happen to live in the know in this particular category. So when you meet people who are in this type of know, you don’t miss the cues, no matter how small. And the cues usually are small –which is what makes them so big.

The topic of Wil’s limitations never came up directly. In discussing who Wil was as a person, the conversation naturally unfolded into what his triggers were for certain behaviors and what extra help in certain areas he may need. The camp director determined that how the camp was structured would be a good fit for Wil, and described the group she would place him in (with 10-12 year olds). It also so happened that the staff member leading that group has an adult sister with autism. Though Down syndrome and autism are very different, there is a deeper understanding gained in growing up with a sibling with special needs. 

When I met the staff member leading Wil’s group at the camp, I knew right away he would be a good fit for Wil. Wil had a Master’s baseball hat on, and he said to Wil, “Ahh, the Masters! I love watching the Masters. So you play golf, Wil?”

“Uh huh,” Wil said. Wil looked around at the other kids that were playing ball. His eyes were wide and nervous, but he also wanted to join in the fun. The staff member got Wil settled and I asked him about his sister. 

“She’s doing great. She has her own agenda, you know?” I nodded. In his words were a whole world I knew. I didn’t know him, I didn’t know his sister, but I understood what lived under those words. There are pieces of this life that are difficult to articulate. They have to be lived to be truly understood. Even though each piece has its own personality, underneath it all the emotions are the same. And that’s where we met. It’s the same place I meet my friends in our Down syndrome support group. We don’t have to explain, thank goodness. Explaining takes too much energy and the words always fall flat. It’s an enormous comfort when you meet someone underneath the words. 

With the combination of the camp director and the leader of Wil’s group, I knew he was in good hands. It was time for me to go, and give Wil his first day at camp. I gave Wil a hug, said good-bye and walked back to my car. 

These are my first steps in opening Wil to greater independence. It’s a feeling I’m not sure I’ll ever be able to articulate accurately with words. But if you saw Wil’s eyes, you would know exactly what I mean without my saying a word.

Of Mice and Squirrels – Defying Categories

“Look at me, Mom.” Wil held a sandwich close to his mouth and nibbled bit-by-bit.

“Look at you. Such a cute, little mouse.”

“Ugh, Mom, no. I’m a cute, little squirrel,” he said emphatically, then rolled his eyes upward. Wil is an expert at merging the aspects of childhood with the antics of teenage-hood.

Wil’s voice has grown deeper, there is the faintest hint of peach-fuzz on his upper lip, and he has a huge crush on Luke Bryan’s wife, Caroline (ask Wil what he wants to be when he grows up and he’ll answer, “married”). Wil has a mean left-handed golf swing, he knows every word to no less than 100 songs (99% of which are country), and he gives a hug that melts the grumpiest heart. 

Wil recently ditched watching his favorite show, Doc McStuffins. “It’s a baby show, Mom.” Yet if Sesame Street is playing on PBS, he stops in his tracks for Elmo. It’s the music that moves him, no matter the age it’s intended for. Play anything from Hairspray to FrozenHigh School Musical to Sing, and you’ve got his attention.

I’ve been asked on many occasions what “mental age” Wil is. I think it’s a way for people to understand his abilities. But it’s not a question I can answer. Wil’s interests and skills are much too broad to categorize him under a singular mental age. To understand Wil is to understand his individual interests and skills. And even those could change tomorrow. Except country music — that lives in his soul.

In our Down Syndrome Support Team, we parents share insights on our children’s learning styles in reading, math, and social studies. We exchange stories on their sports, hobbies, and friends. We laugh and cry over the challenges of puberty. Topics most parents discuss. However, many of our stories are elongated and can be quite in-depth. What works today may very well not work tomorrow. There may be a stand-still in progress for what seems like an eternity, then one ordinary day the floodgates of progress fly open. In our world, no day is ever ordinary. Every day holds a surprise gift waiting to be hand-delivered. We know the gift is coming, the surprise is in not knowing exactly how or when. 

Each of our children cross the bridge to a milestone on their own timeline and in their own way. Some bridges have a few extra planks built-in, others circle back to wind forward, and a few crisscross with one another. It’s nearly impossible to speak of our children in linear terms, nor do we want to. I find it highly ironic how often our children are categorized when they defy the boundaries of most any category they are placed in. 

I would know. Just this morning I had mistaken a cute, little squirrel for a mouse. And so life grows…

The Ghost of Pain

Not too often, but every once in a while, and it happens when Wil is doing something active like playing basketball or fishing, a transparent form of Wil superimposes himself over the real Wil.

The transparent Wil moves and plays in perfect time with the real Wil. The only difference is the transparent Wil’s limbs move fluidly, and are slightly longer and lither; his eyelids rounder, his ears higher, his hair wavier.

Just like a ghost from the past, the transparent Wil never announces his arrival. I’m both struck with shock and familiarity when he shows up.

I used to question myself when these transparent visions would appear. Deep down I know my acceptance of Wil’s diagnosis. I took the very steps to full acceptance myself, because no one can take those steps for you. You can be supported, lifted up, and cheered on, but it is you who must cross that very finish line on your own two feet.

I crossed the acceptance finish line long ago. So why do these visions appear? They don’t come often, but shouldn’t they have long faded into the past?

But that’s not the way it works. When Wil was a baby, and I was on my journey to acceptance, I would stare at his almond shaped eyes, cup my hand over his short-stubby fingers, and find myself falling in love with all the features that initially terrified me. The features that are considered “markers” for Down syndrome.

But even with acceptance, sometimes the brain just wonders. When I see these superimposed visions, they are not filled with longing. They are not filled with pain. They feel more like observations. And that is why I can accept the visions too.

I’ve learned so much with this acceptance process. Acceptance always starts with a deep pain. A pain surrounding something you did not expect. A pain that wants to make a home in the pit of your belly and never leave.

Sometimes, though, you have to sit with that pain in your belly for a while. Let it burn down deep. Let it light it’s fire until it’s too painful for you to let it stay. And there will be so many well-meaning people saying to call out for help, and though you desperately need help, you don’t exactly know what kind of help you need. So you have to sit with it. Feel it. Assess it. Journal it. Hold a friend’s hand while feeling the fire. Share what the fire feels like. Don’t paste over it – don’t try to make it look prettier than it is. Don’t stuff it down, don’t cover it. It will burn its way back up with a fury. Just don’t sit with it too long. Or the pain will become part of you. It will hurt, but it will be habit. And you owe yourself more than that. When we find our way out of the fire, it’s never in the same place where it was set.

When I see the transparent Wil, he doesn’t threaten my acceptance. Because I sat with him when he was a fireball of pain. I felt my loss for him. I held my friends’ hands and talked about him. I made peace with him. And I let him go.

I’m not sure our pains ever leave, but how we look at our pain is what changes. Now when I see transparent Wil, he is a reminder of how far I have come on this journey. How I can sit with the pain. How I can let it go, even when it comes back.

Open Book Ice Cream

My high school science teacher was amazing. And I had very little interest in science. He practically leapt off the floor explaining the periodic table. It was like someone just put this amazing hot fudge sundae in front of him and he couldn’t wait to dig in.

What amazed me the most was that he taught this same lesson again and again, year after year. Yet every single day, he brought the excitement. To that same old periodic table. Everything fit in this nice, little box. The combinations, even if dynamic, were predictable. No surprises. I was bored out of my mind. But I loved my teacher. He almost made me want to love science, just because I loved his enthusiasm for the subject. 

Then, in college I discovered blue book tests. I could scrawl my thoughts, in glorious freehand, across the blissfully empty white pages with pale blue lines. An empty white page to me is one of the most beautiful sights there is. And to take your own pen and feel the flow under your own hand, now we are talking digging into rich, luscious hot fudge sundaes!

And I could make it a different sundae every day! Carmel on smooth, groovy days. Strawberry on fresh, sticky, summer days. Pineapple when I was feeling prickly and tart. Blue books were so beautifully, uniquely open-ended — there were no predictable combinations when interpreting a book or poem, even if the character’s names never changed. Every person is full of surprises!

When Wil went from preschool to kindergarten, he was able to string beads — big beads with big strings. But he had to take a test to evaluate his skills. In the test, he was to string a small bead with a small string. He couldn’t do it. There were only two boxes to check. A yes box and a no box. 

As a result, Wil entered kindergarten testing at a 6 month old fine motor skill level. He was well beyond that. The test failed, Wil didn’t. The same thing happened when Wil went to his 1st endocrinologist. Wil didn’t fit in the predictable boxes. As soon as I checked the “no box” that he hadn’t achieved a certain skill, I was told to skip to the next page. “But, wait, he can do some of the other skills on this page.” “No, he can’t.” Was the answer I received. Where was the blue book for me to fill out about my unpredictable son?

Upon the news of Wil’s kindergarten testing results, his speech therapist spoke up and said that there will be very open communication between Wil’s preschool teachers and Kindergarten teachers. That though the test measured certain skills, it will be the open communication that determines where Wil will start with his ability level. I felt the beautiful, crisp new pages open upon her words. 

I also found a new endocrinologist. I knew she was the one because when I told her of our experience, she handed me a blank sheet of paper along with the test. She said to write down all the skills the test does not cover and we’d go from there. Hot fudge sundae, anyone?

On February 5th, 2007, I learned first-hand that you can change just like that. That the person you were one second can change in the next. I couldn’t force Wil to be a typical boy. My choice was to learn what all of this meant and to write our own pages with it. That is why I’m deeply offended by any claims to “cure” Down syndrome. He is a beautifully, varied and valuable human being and his story is just beginning to be written. Why burn the pages when being part of the story is so much more meaningful?

I loved my science teacher even though I never grew a love for science. What I learned most from him is we all have our different passions. And not a single one of us fits in a perfect, little box. That may be why he felt the love for his periodic table. How everything had an answer when life didn’t. And for that, I love my blue book pages. Where I can scrawl out, in long free-hand, the ever changing and evolving interpretation of what’s around me. As long as we can make our life new every day, be it by the periodic table or a blue book, then it will be a place we can’t wait to dig into…and we get to choose the topping! 

Drop It To The Floor!

When Wil drops himself on the floor, there are times when someone who doesn’t know him well will step up and say, “Let me try.”

“Have at it,” I say. Then I sit back and observe what I already know is going to happen. I can’t always predict the exact words, but I do know the tune with which the words are played. It’s a sweet tone; syrupy sweet. The notes tilt up as they go, the sentence always ending in higher notes.

I know this tune, I’ve used it before. But it’s not getting him off the floor. Though the tune is sweet, the words are still based in someone else’s agenda, not his. And he knows that. If the Pied Piper came to town, Wil would be the sole remaining child. Unless, of course, the Pied Piper was well-versed in Luke Bryan. Then Wil would fall into step.

If it’s not his tune, he’s not budging. Though he may appreciate the sweetness of the notes, underneath it he knows it for what it is. Your tune, not his. No amount of syrup is going to slide him in your direction. Unless of course, it’s in a bottle of Sprite. Then you’ll be singing his kind of song.

At home, if I want more of a cool, calm vibe, I’ll ask Alexa to play “Van Morrison Station.” Wil will throw his head back and holler out, “Ugh, Mom! Alexa play Luke Bryan Station!” Then he’ll start breaking out his latest dance moves. “Watch this, Mom!”

It’s not that hard to get Wil off the floor, unless, of course, you aren’t playing his tune.

An Evil Queen’s Observation on Acceptance

I am often placed in the position of being teacher. Not by trade. Not by degree. But by raising a child with special needs.

My favorite way of learning is through storytelling. Allow me to introduce you to the cast:

Grumpy: Lila

Happy: Ashley

Sneezy: Seeger

Sleepy: Sarah

Doc: Olivia

Dopey: Lillian

Bashful: Rebecca

The Prince: Wil

The Evil Queen: Yours truly

I, the Evil Queen, trailed 10 feet behind the Prince, Grumpy, Happy, Sleepy and Doc (we’d join Dopey and Bashful later). The Prince’s red cape billowed behind him as he ran with his knit-capped friends of varying personalities. Grumpy created the route; it was one she had carefully constructed over the years that yielded top candy output. The friends fanned out in the side streets, then narrowed 2×2 down the sidewalks– Sleepy ran ahead to talk with Happy; Happy later dropped back to put her arm around The Prince; Grumpy sped up to catch Doc, Sleepy shared a story making Doc laugh. They were a letter swapping word game; switching it up, creatively making sense in any order.

The Evil Queen lingered behind, careful not to put a kink in the easy moving chain. The Evil Queen’s role this Halloween night was to walk the Prince back to Grumpy’s house when he showed signs of tiring. Other than that, she was merely the observer.

As the friends made the climb up to Chi-Bro Park, the Evil Queen saw it was time for the Prince to take a rest. The Prince received a round of hugs from his friends, and he and the Evil Queen made their way to Grumpy’s. (This particular Prince is a fan of Luke Bryan, so he and the Evil Queen jammed out until the rest of the crew returned.)

When Sneezy, Grumpy, Happy, Sleepy and Doc returned to meet up with the Prince and Evil Queen, they all headed to Sneezy’s house for a haunted woods walk and bonfire. There they met up with Dopey (Bashful joining in via zoom). The friends banded together and each carried a flashlight, that doubled as a whistle, to survive the scares from the Evil Queen, Sneezy’s parents and any other spooky spirits that hid in the haunted woods.

Having successfully survived the haunted woods, the friends sat around the bonfire. They flashed their flashlights and blew on their whistles in between conversation. As the pitch of the whistles increased, the Prince became overwhelmed as he is sensitive to loud noises. Without warning, the Prince jumped up out of his lawn chair and disappeared into the dark.

In perfect unison, Sneezy, Grumpy, Happy, Sneezy, Sleepy Doc and Dopey lifted out of their chairs and banded together. Flashlights in hand, they ran together into the dark: “We are so sorry, Wil! We just forgot.”

“That’s ok,” was the reply I heard from the dark. The Prince and his friends began a new game in the dark with their flashlights, but not the whistles.

One afternoon at school, Wil became overwhelmed during the lunch hour. He got out of his chair and bolted. He was chased by a few students and teachers. When he reached the hallway, he plopped himself down on the floor. The well-meaning students and teachers that followed him tried their best to coax him back up. He wouldn’t budge. Seeger (aka Sneezy) stepped up and asked that Wil be given some space. She explained that he needed to feel back in control of his environment. How did she know this? Because she read “Stories of Wil: Puberty Part 1.” She wanted to read this book to better understand her friend. How cool is that for a 13-year-old? Sure enough, Seeger’s suggestions got Wil off the floor and back in the lunch room.

There are buddy programs in schools that pair typically-developing students with students who have special needs. While many of these programs are viewed as teaching typical kids how to have a better understanding of those with special needs, they are really about creating an understanding that we all have differing needs. And that can change on a daily basis, especially when you are in middle school! We all are a multi-letter swapping word game that requires creativity in putting the pieces together. Wil and his friends do not play by their differences, they play by their understanding.

Though I am often placed in the position of being a teacher, in this story I am the observer. Grumpy put me there. She asked that I be the Evil Queen. Grumpy knew that if the Evil Queen was available in the background, the Prince could join his friends for a night of trick-or-treating. Grumpy not only mapped the trick-or-treating route, she also creatively put the pieces together.

I hope you have learned as much from the story of Grumpy, Happy, Sneezy, Sleepy, Doc, Dopey, Bashful and The Prince as I have. May you find yourself in one of them (or maybe a few of them depending on the day). Play by understanding. Shuffle the pieces. Get creative. You never know who may be learning from your story.

A Darn Straight Day

“Mom, I worked hard today!” Wil shouted as he threw the car door open and took a seat right behind me. The school day had just ended. Elizabeth slid into the passenger seat and Katherine jumped in next to Wil.

“No way, Wil, not three days in a row.” I said.

“Yes!”

“Nope, not possible.”

“Yes!”

“Put it here, buddy. I’m proud of you.” I raised my hand over the front seat and Wil met it with a strong high-five. “Katherine, did you work hard today?”

“Hmm, sort of.” She gave Wil a sideways smile.

“What!” I rolled my eyes in mock disdain.

“Giiirl,” Wil pointed to her, “you work hard!”

“Elizabeth, did you work hard today?” I asked.

“I did, but I could have worked harder.”

“Darn straight!” Wil yelled out.

“Wil learned that from Ms. Kastel in a game they were playing.” Elizabeth said. “I think she changed one of the words.” We shared a smile.

Ms. Kastel was Wil’s 7th and now 8th grade social studies teacher. 7th grade was a particularly trying time for Wil, with a change in schools and an uptick in puberty. Ms. Kastel was cognizant of this and continually worked to find ways to connect with Wil. When she discovered Wil’s love for country music, she introduced him to one of her favorites, Johnny Cash. She bought the two matching t-shirts which Wil wears proudly. Wil also loves Pringles, so he and Ms. Kastel share a Pringles cheer for a job well done in class. Not surprisingly, social studies is now one of his favorite subjects.

On our drive home, Elizabeth filled me in on her day. Katherine added commentary on their shared classes. Wil listened to both of his sisters, then hollered out, “Mac ‘n’ cheese, Mom!”

“Mac ‘n’ cheese? You had it for lunch?”

“No, made mac ‘n’ cheese.” Wil mimicked stirring a pot. “With Victoria and Anna. My Connect friends.” (Connect friends are typically-developing juniors and seniors who are paired with students who have special needs.)

Oftentimes, Wil doesn’t offer much after school. He’s generally open at bedtime, when the house is quiet and there is time and space to share his thoughts. It can be challenging to create space between his sisters’ words on the drive home. We will often ask Wil questions to create the space for him. Though we typically get a “hmph” and shrug of the shoulders in reply.

When Wil stepped into the car that day, he threw the door wide open to his school experiences. I never know when or how a breakthrough in communication will arrive, but I know it when I hear it. On this day what busted down the gates was a build-up of three straight days of working hard, making mac ‘n’ cheese with Connect friends, a darn straight awesome social studies teacher, and hard-working (even if they tease they don’t), loving sisters who naturally show Wil how to create his own space. And that’s exactly what he did.