When Wil was diagnosed with Down syndrome, the nurse could have not explained through my tears, “Your norm will be a compilation of random events like your son interrupting you doing homework saying, “Mom look at this!” About some Blues Clues song he randomly discovered and got super excited about.
Just as how I, now, can not sufficiently explain that these seemingly random moments have so much value in their history. In what it took to get here, and now to enjoy his words, his dance, his joy.
My life has been irrevocably changed. Thank God ❤️
Wil wanted to ride his bike to school. We live on a busy road so we agreed on him riding from a park about a mile away. He’s 17 years old so of course did NOT want me with him. We agreed I’d meet him where the sidewalk curves to the high school.
It’s very cold so it wouldn’t be unusual for him to feel cold, get off his bike and just walk off anywhere. So yes, when I saw him crest the hill I was very happy; as was he happy to be given this independence. He even got cheers from a friend driving by!
Wil had to cross the street to the high school, so it was a non-negotiable that I be there to facilitate that. I wish I could see who was in the pickup truck at the Crosswalk. That driver saw Wil’s approach well before Wil arrived at the Crosswalk and waited there extra time until Wil approached and crossed.
That’s what I love about this small community. How we know and look out for one another. ❤️
Wil and I decorated the Christmas tree. It’s the first time we’ve done it just the two of us.
Usually the twins are here so he’ll hang a few ornaments, but then move on to singing or other activities around us.
As Wil was home sick, and we needed low-key activities to stave off boredom, I suggested we decorate the tree. The tree was up, we were just waiting for the twins to come home this weekend. But I said let’s do it.
That’s all I needed to say. Wil got the box of ornaments from the basement and we got to work.
As it was just the two of us decorating, he put up more ornaments than usual. He picked one area of the tree and put all the ornaments there. Fine motor skills are hard for him (such as pinching his fingers together), so when he got frustrated putting the ornament loops over branches, he just shoved the ornaments into the tree.
“Wil, take a break when you need to. I know this gets tiring for you. But watch this, if you hold it like this it’s easier. And feel free to spread out.”
He did take a brief break. Then he tried looping a few more ornaments but stuck to the same spot.
All of his ornaments in one spot, many shoved in, was so darn cute — like a younger child would do. But also mixed with the teenage defiance of “you can tell me what to do but I’ll do it my way.”
Tree decorated, we cleaned up pieces of sparkle and felt that had fallen off of older handmade ornaments.
Wil picked up a red piece of felt, held it under his nose and said, “Look Mom, a mustache!”
Wil is an expert at spontaneous joy. As frustrated as he gets at things that are hard for him, he always has a silly something up his sleeve. It’s these moments that have changed my life. How otherwise mundane tasks can be incredibly joyful in the simplest of ways.
Which is one of the many reasons I don’t like the question: “What mental age is he?”
Ummm, he’s 5, 10, 17, 25 all in one moment. What mental age are you?
Some of us, like Wil, have all our ages all bunched up together in one spot.
Sometimes we need some guidance to spread out, and other times we know exactly how to make the best of right where we are. ❤️
Elizabeth sent me this picture of her and her sorority sister, Isabelle. They were visiting a cider mill and enjoying the day with their sisters.
I love to see her big heart and smile, and loving life on her own. She has more than earned this time. She and her twin sister, Katherine, are great big sisters to Wil. Having a brother with a disability has impacted them. How couldn’t it?
Elizabeth is a sophomore in college studying to be a Physician’s Assistant. Since her senior year of high school, she’s worked as a Certified Nurse Assistant. She’s currently working at the local hospital as a CNA with a full rigorous academic load. As a CNA, she’s worked in many challenging situations, but no matter how challenging she treats each person with dignity. Every story she shared with me shows concern about the person underneath the challenging behavior.
Growing up with Wil, which requires patience and many times schedules built around his timing, plays a big part in this. Yes many times his needs come first. I think many believe this is a burden for siblings. But there is a flip side, there always is. And that flip side is growing a deep compassion within yourself for how others think, feel and operate. This understanding for others is grown strong by living it every day.
I love to see Lizzie in pics like this enjoying time and living life for herself. She deserves time that is all about her and all about her dreams. And with that, she also always carries with her the knowledge and compassion of what it means to care about another. There is always a flip side 😊
It happened after an event in the high school gymnasium. I don’t remember the event, but the after-scene is a moving photograph vivid in my mind. Wil approached a group of male high school peers on the gymnasium floor. At his approach, the circle broke with fist bumps, hellos, and high-fives with Wil. Two boys asked him a few questions, which drew Wil into the circle. Wil’s words – spoken with a slight stutter as he often does when he has so much to say, but his brain struggles to push the words out as quickly as he thinks them – had their attention. When Wil finished sharing, the boys resumed their conversation. The boys talked and laughed; the circle grew subconsciously tighter. Wil stood in the same place but found himself on the periphery.
These boys were not consciously excluding Wil. They were engrossed in their own stories and had forgotten Wil was there. It broke my heart to watch Wil walk around the circle of boys trying to find ways to re-insert himself.
Contrast this with Wil choosing to sit with a group of boys in the lunchroom mid-year. He one day, seemingly randomly, positioned himself at their table. They all welcomed him in and he joined them every day after that. The lunch table is also a more conducive environment for Wil to remain prominent while everyone is seated around a table. He can more adequately speak at his own pace. A few years ago, I spoke with a classmate about when Wil randomly sat at her lunch table. She said that at the time there was a lot of drama and gossip happening at their table. When Wil joined them, the drama stopped and the fun returned.
Wil recently went to his friend, Will D.’s, graduation party. Will D. also has a disability but has a much higher athletic ability than Wil T. Will D. has run ½ marathons and was on the track, cross-country, and baseball teams. As such, many typically developing athletic classmates attended Will D.’s graduation party. Two of these teammates were playing cornhole out in the sideyard when we arrived. These two boys gave a hearty hello to Wil T. and invited him to play cornhole with them. All the players found an equilibrium; their conversations were well-matched, relaxed, and fun. Watching this filled my heart.
At the water park yesterday Wil was floating down the lazy river in his tube. The lazy river is designed like an oblong circle, which splits and rejoins at one end. At the split, you choose to go under faucets spouting water or take the faucet-free dry option. Wil would alternate his decisions at the split, weighing more heavily on the “get wet” side. I watched as he by-passed certain tubers, and slowed to join others. He hung around a group of tween girls for some time, laughing when they laughed, choosing the same split in the river as the girls did. He then moved on to join a group of three young men. The men engaged him in some talk and fist-bumped him. When those young men exited the river Wil joined other young-ish groups. Down syndrome was on his side in this environment. No one questioned him, they immediately accepted him when he floated into their circle. Even if they didn’t converse, they shared the enjoyment and togetherness of the moment.
I wonder, what would the world look like if we all just opened our circles a little?
Just 2 years ago during graduation party time I needed an eagle eye on Wil. At one party he fled the party and would not leave the front porch. At another he ran to a side street and sat in the middle of it. Yesterday, at each grad party he hung with his buddies. And made new buddies. He played cornhole with known and new friends. He joined a basketball game with upper classmen from MSU. At each party, I only went to check on him here and there. A stark contrast from two short years ago.
He’ll be a senior next year, and then likely on to a young adult program. When he’s 20 he may have a whole new level of independence from what he has now. Time, opportunities, supports and his own will will tell.
Every individual is their own, no matter their disability. We cannot define nor predict their growth, but we can observe, we can open doors, and we can learn where to step in and offer supports, and as I’m currently learning, when to step back.
I sat in my seat as Wil walked up on stage to receive his school honors. He needed no support or assistance. He, like his peers, walked from his seat to the stage and back to his seat.
As he returned to his seat, I waved so he could find me, but he didn’t need my wave. He didn’t even look up at me as he made his way back. He knew where he was going without me.
Last Tuesday while in a class I’m taking, I watched a Youtube about people with physical and cognitive disabilities living on their own with support. If I was at home, I would have had a full-on sob. I consciously held myself together the best I could. Tears silently escaped the corners of my eyes that I discreetly brushed away.
What I was watching is fought hard for. These individuals’ independence, and the supports required for their independence, is what’s right and what these individuals fully deserve. And yet, this terrifies me for my own child at the same time. Wil will always have a level of vulnerability. I have to put a helluva lot of trust in someone else’s hands if he does choose to live independently with outside support.
And yet, here I am, the one who has worked so hard for his independence for the last 17 years, waving for him to find me. In many ways it’s we parents of our vulnerable kids who can’t let go. Our hearts are just as vulnerable as we navigate impending adulthood for our kids.
I was in the living room. Wil was sitting in his bedroom adjacent to the living room.
Wil often talks to himself – many of us do. It helps us better process our thoughts, and it’s the same for Wil and for many people with Down syndrome. I quite like eavesdropping on Wil to better understand what is on his mind. Every morning he has a back-and-forth conversation with himself on what to wear: “Wear the blue shirt? Yeah, yeah, the blue shirt. Ok, the blue shirt.”
His exclamation about the marble though, was no back-and-forth conversation with himself. He wanted me to hear it. He was waiting for my response. Wil’s sister Katherine was home so he didn’t have my full attention as he’s grown used to since his sisters went away to college.
His attention-seeking strategy was effective. I went straight into his room.
“Wil did you really swallow a marble?”
“Hmph.”
“Wil, please tell me as this could be serious. I need to know. Did you swallow a marble?”
“Yes.” Then a moment later, “No.”
I actually had no idea if this was serious or not. I quickly googled swallowing a marble and found that it was quite common in young children. As a marble is round and smooth, most pass without issue. I sighed relief. But I didn’t want Wil to think he could add marbles to his diet.
I sat down next to him. “Wil, if you did swallow a marble, it’s very important that you tell me if your stomach hurts right away. Ok?”
“Ok.”
“So, did you swallow a marble?”
“No.” Then, “Yes.”
He was getting the attention he wanted from me and was holding tight to it.
“Ok, how about we go watch Olaf’s Frozen Adventure,” I said. Wil loves Frozen, and I love Olaf, so this was a show we both have watched together multiple times, which is why I chose it in this moment.
“Yes!”
I still have no idea whether he swallowed a marble or not. Wil does not outwardly lie. I’ve never heard him lie, and I don’t think he even knows what lying is. In this case he wanted my attention.
Other times, if I ask a question and he doesn’t know the answer, he will throw out a yes or no just to answer me, or whomever is asking. His eye exams can be quite challenging as this happens a lot.
But yesterday, he took one of his friend’s phones as a joke, and his teacher let him know this was no joke. His teacher then Facetimed me, with Wil, about this so we could all talk it out. Wil then understood the seriousness of taking other’s possessions. When Matt and I talked about this incident with Wil after school, he was very honest. As he always is with these types of questions.
After about 5pm every day, Wil will blurt out a detail about his day. This is a quieter time at home, or when we are in the car on the way to a therapy or the grocery store. He’ll blurt out, “Chocolate chip cookies!” Or, “Omelets!” Which is what he made in cooking class that day and then we can talk about it. But if I ask too soon, he won’t tell me. Wil shares on his own timeline when he’s had time to unwind and process his day. Then, he’s an open book.
Sometimes I don’t understand what he’s saying, so I’ll ask him to spell it. Yesterday I asked him what he did in choir.
“Whales.”
“Whales?”
“Yes, whales.” He said. Thinking I misunderstood him I asked what letter it started with.
“W.”
“Oh, ok.” Now realizing I heard him correctly, but the context was out of place for me, I then asked, “Did you watch a movie about whales?”
“Yes!”
It’s really interesting how breakdowns in communication can happen. I did hear what Wil said, but as I didn’t connect whales with choir, I thought I misunderstood him. I’m not the best listener, but with Wil I am because I have to be.
I used to say, “Oh, I’m not that kind of person.” But I quit doing that, because raising Wil I’ve had to be many kinds of people that I didn’t think I was.
Many think raising a child with a disability is a burden. But in fact, my experience has been that Wil has brought so much freedom in my life, in altering the way I think, hear and see the world.
I’m no born-natural. I’m not made to raise a child with Down syndrome.
But here I am. And working as a paraprofessional, no less. I have a lot to offer, we all do. But I have a lot to learn; that’s exactly why am I where I am. Not because I was born with a special gift. I’m here because I have reason to care. And I do care; I care a lot.
The children I work with now have very different skill sets than Wil. Navigating these little humans’ ways of processing their world has been a great challenge and a great joy. I have good days and I have bad days. The bad days are hard. I beat myself up, and I’m working on that within myself. But I’m working with humans, and when I make a mistake it hits me personally. The upside is this is a high motivation for me to learn more – I’m always trying to figure out how to do things better the next time.
Raising a child with a disability I have come to learn one truth: life does not move in a straight line. When you think you’ve got one strategy down, you get thrown back 3 feet the next day. It reminds me of a game my Grandpa used to play with my sister and me as young kids. He’d sit on the back porch, leaning back in a cushioned chair blowing out smoke rings from a Viceroy cigarette. My sister and I would stand all the back at the end of the yard. He’d call out if we were to take small or giant steps forward and back. If we forgot to ask “Mother May I” we’d have to go all the way back to start.
Some days there is this invisible trigger within these children that I trip, and just like forgetting to say Mother May I, I get sent all the way back to start. But I get smarter, and I learn more and forget less. And finally, when I’m able to help one of these children through their emotional distress and they open up in communication, and they look up and smile at me, I float higher than one of my Grandpa’s smoke rings that I loved jumping up and catching on those long, summer days.
My work is hard. Raising Wil is hard. But so is just about everything else that we at first do not understand. Seek first to understand. Within those four wise words is enrichment in life. I’ve never lived so deeply as when I fully accepted my son. I still revert at times. I still go back to wanting the kids I work with to just do it my way. It’s easier that way – for me. But it’s not their way. It’s not the way their brains were made to work. And it’s also not all about everyone having their own way either. It’s about learning to work together.
Wil and I are recovering from Influenza A. He was all excited to get out of the house, but when it was time he got stuck. I sat down with him. I asked him what his upset was. Wil takes time to process and time to share. So I just sat there for 5 minutes. Not because I’m made for this, but over the years I made myself for this. And we unwound his wound-upness and we left the house without further issue. No one pushed anyone. We both had our say. It’s just time.
That’s what I am navigating now with the kids I work with. I’m learning again like I learned with Wil. I’m learning their way of doing things. Their way of thinking. And when I find that patience within myself, and I give these kids the space they need, it’s the most enriching experience ever. But sometimes it’s really, really hard to get there. Sometimes I’m just worn out from a 45-minute bout of emotional deregulation with still no progress and I walk away in tears. Because this is a human being and I’m disappointed in myself for not finding a way, and I’m tired and frustrated. Again, I’m not made for this but I’m finding my way because it’s so worth it. But like that game with my Grandfather, even though it can feel like it’s a setback, it’s really a setup for growth. A setup for being made for this. I get smarter, and I do better for these kids.
Inclusion is not easy, but it’s not evil either. On paper, it looks beautiful, and there are many proponents of inclusion that are more in love with the thought of inclusion than the reality of it. On the flip side of the paper, I still hear people say they “don’t want my kids with those kids.” Both stances are ignorant. Inclusion takes work. Inclusion takes listening and understanding what our kids with disabilities need just as we do for typically developing kids. It’s a game of Mother May I. When Wil had his first behavior plan in middle school, the first thing the educators told me was that it was a very fluid plan. We knew where we wanted to go, and we set parameters to get there, but the exact timeline and the exact steps would have to be navigated and adjusted along the way. What mattered most was that everyone at that table cared. We cared a lot. And that is what got us all through Wil’s puberty years to successful high school years.
No one is special and we all are special. We all belong together, no matter how pretty or messy it is and how many steps it takes and in how many directions we have to go.
The only requirement is to care. And that I know is natural within all of us. We just need reason to find it.
My Grandma used to wrap presents in newspaper. In the opening, my fingers would be covered in smeary black smudge, but as a kid who cared? My Grandma didn’t much care either, which is why she didn’t spend time buying pretty wrapping. What was important to her was the giving.
Now I look back and both chuckle and endear the memories of gifts covered with my black fingerprints. The receiving of the gift also had my mark on it.
Curiosity, to me, is like those black smudged gifts.
There was once a day I did not want a child with Down syndrome until I birthed a child with Down syndrome. I got as curious as I have ever been in my life that day Wil was born.
My experiences were messy. I didn’t know what I didn’t know. Oh, I had advice. Lots and lots, but even in our community of parents raising kids with Ds, we laugh together about how what works one day likely won’t work the next.
Our culture also draws hard lines about what is right and wrong. But maybe, with experience, those lines may be smudgier than you realized.
No matter how much we know, or think we know, think back on all those smudgy experiences that led you to your beliefs today. Allow space for curiosity in yourself, allow space for curiosity in others.
Sometimes unwrapping the best gifts are when we have to get our fingers dirty first.
'WIL'ingness = Willing to Embrace Extra in Life 