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. ❤️
It’s those details that you never miss. The telling me about something, when at one time he couldn’t. I used to ask questions I knew he could answer. Because if he didn’t think he could, he’d shut down and I’d get nothing.
When Wil used to eat a chocolate donut – this is no joke – he’d mumble, “mmmmmmm” the whole time! I was like, that’s how you eat a chocolate donut! So my question of “Is that donut good?” was rhetorical but I would get an “Mmmhmm!” out of him.
Wil loves chocolate shakes. When he was younger, though I was the person who ordered the chocolate shake, when he was drinking it I’d ask, “What flavor is your shake?”
“Chocolate!”
Now he just tells me things. It may be sometimes later, well after the fact, but he’ll tell me things without my asking. The other day, well over a week after camp, he blurted out, “Walking tacos Mom!”
“Yes, you had walking tacos at camp. Those are so good! What were your favorite toppings?”
“Cheese, peppers, salsa…mmmm.” (His camp counselor said one of his favorite parts was the food!)
Last night he came home from the new ice cream place in town. As he walked in the door he said, “Want a taste?”
He held out his spoon. I took a bite and remarked on how good it tasted.
That’s when he offered, “It has chocolate chips in it, Mom.”
I suppose it could be said of such moments, “It’s the simple things in life.”. However, experiencing such moments built upon one another day-by-day and piece-by-piece, makes that saying much too rote.
If we do have to summarize such things, I’d much rather it be said, “It’s the chocolate chips in life.” Wil would give a big mmmmhmmm to that!
He has delayed speech but he’s not delayed speech. Some of our traits carry deep meaning, and others just are what they are – we give them little thought. Or maybe they are fun to play with, like changing our hair color. It is our choice in what meaning we give to our various traits. And that can change over time with the experiences of our lives. But we are not the only ones who give meanings to our traits – there are others who may assign different meaning to who we are. For some, Wil’s delayed speech makes his person less valuable. Such limited thinking about who a person in is linked in fear. It gives our brain a certain satisfaction to categorize what we don’t understand, or more accurately what we don’t care to understand:
“That’s retarded. What?! It doesn’t mean anything. It’s just a joke.”
“He’ll always be happy. But it’s a compliment.”
“They are all angels.”
Whether the above is considered positive, negative, or otherwise, these are extremely limited definitions of who we all are as complex human beings, no matter how many working parts we have, no matter how many chromosomes we have, etcetera etcetera etcetera. None of us fit within a box, even an angelic one.
Who were you when you were 7 years old? When you were 12? 16? 25? 32? 41? 52? We are always flexing the margins of who we are due do internal and external circumstances.
My instinctual reaction to Wil’s diagnosis was full of limited thoughts. This is instinctual. Having fear protects us from the dangers of the unknown. Fight or flight. But it doesn’t have to be a way of existence. Though instinct may initially rule our brain, we can then take the next step to make different choices. Situation-by-situation learning opens more doors to new ways of thinking if we allow them to come in.
I don’t want to spend my life fighting for my son. There may be instances where I do. And maybe this writing I’m sharing with you is fighting for my son. But I don’t see it as combative. It’s a sharing of knowing him. I’m sharing with you what I have learned about my son, and how he has changed my life not in easy ways, but in profoundly simple ways. And that is simply getting to know him. Yes Wil has Down syndrome, but Wil is Wil. And Wil changes every day as we all do.
Yes, Wil needs speech therapy. Yes, Wil has moderate cognitive delays. Yes Wil does not understand certain dangers and concepts. Those things are different from me. And some of those things cause me concern. But I see them, I don’t hide from them. I don’t fight them. But they are different so sometimes I struggle with them. Sometimes I get jealous of seeing my empty nester friends have freedoms I do not. But that is just one window of the many I look through in life. I see life in so many different ways than I once did. Though some doors may not be as open to me as others, that is how life is anyway. I am open to opportunities around me, and I walk through those doors and I evolve with them. That is feeling life. That is knowing life. I don’t need to understand life, Down syndrome or many other things in a scietific way, but rather a relational way.
There was a school board member at our school that wanted to reduce special education staff. He went back to a statute in the 1970s to back his cause. If you went to school in the 70s, or even as I did in the 80s, there simply were no students with disabilities in our schools. Or if there were, they were in the basement or otherwise segregated. Inclusion as we know it now did not exist. If it did, that was a rare and very fortunate experience. I’ve read a lot of books on the civil rights acts and how obtuse politicians were about making changes for people with disabilities. It’s hard to read. Have you ever seen pictures of people in institutions? It’s abhorrent to even think of how people with disabilties were treated in the 70s and an antiquated law from this time was used as his reference. This particular school board member was invited to sit in the resource room to better understand what special education staff did. You guessed it – he never did.
All it takes to stop improving the world for our kids is to take a stand (to stand still) on a fear of unknowing.
All it takes to improve the world for our kids is to care enough to know more – then live, evolve, grow and share life beyond definitions.
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 talks all the time. He talks to me, he talks to friends, he talks to himself. I wonder at the time, listening to him today, how one hesitant word was cause to drop everything and celebrate. His verbalization today was once a distant, fuzzy dream. Like reaching for a cloud that my hands couldn’t quite grasp.
Wil does have a tendancy to stutter when he’s excited — his emotions overtake his ability to choose his words and his words get jumbled up. I get it; even the most poetic words could never fully describe an emotion.
When Wil sings, however, there is no stuttering. His emotions, paired with the words, are set free in song.
When Wil talks to himself, there is no hesitation in his words either.
“Lunch?” He’ll ask himself.
“Yeah, yeah, lunch.” Is his reply.
“What do you want? Hot dogs?” He prods.
“Mmm, hot dogs? Yeah, hot dogs.” He answers himself.
“With mustard and peppers. And relish. Mom! Lunch!”
When his self-talk first emerged, I worried. I remember when I first heard it. He was sitting on the floor of his bedroom in front of his closet. He had a back-and-forth conversation with himself on what toys to play with. It was also at this time that the gap in abilities with his peers was becoming very clear. So this timing had me wondering if he had created an imaginary friend because he felt lonely.
Wil has had the same peer group since kindergarten and they exemplify what inclusion is. Even so, I wondered how this gap in abilities that I saw expanding was affecting Wil emotionally. He didn’t act sad about it. He still talked about his friends in the same way. But there was this self-talk emerging and I didn’t know where it was coming from – other than Wil, of course.
I googled “self-talk Down syndrome.” I found this phenomenon is very common amongst individuals with Down syndrome. It’s simply a way to process thoughts. As Wil grew older and we spent more time with teens in our Down syndrome support group, I realized how typical this is. Now it’s just what Wil does. It’s just what is.
As Wil grows on the outside, I grow on the inside. The stigma of the outside disappears when I find understanding on the inside. I frequently look back and wonder at what I once wondered at. It’s an emotion beyond words.
Last night Wil’s music therapist recapped his session with me. She said, “I know how hard positioning his fingers and his wrist is for him . I can see his restraint from giving up. He has a lot of focus to keep going. That shows me he has been well supported.”
That last sentence 😭 All the years with his educators and therapists and at home. The long stretches of time with few signals of what is working, and what isn’t. Until one day, progress rises up like a submarine shining upon the horizon, revealing the quiet forward motion that had been motoring under the surface all along.
When you see it, you can’t help but feel your eyes sting from the brightness reflecting off the surface.
We historically do not like people who think differently than we do. We want things to work out the way we want them to and we surround ourselves the best way we can so things work out the way we want them to. When things don’t work out the way we want them to we get upset. We may blame ourselves, we may blame others, or we may blame God.
People with disabilities don’t work out the way we want them to. Think on how people with disabilities have been treated through the years. Disability is not seen as a part of the human condition. Disability has been explained away as a curse, a burden; shamed, hidden, tucked away. A therapist once asked me if I blamed myself for Wil’s birth. Hmmm, she didn’t ask me if I blamed myself for Katherine and Elizabeth’s birth.
Wil doesn’t fit into the definition of “things working out the way we want them to.” Sure, you could argue nothing really does, but did people celebrate your baby’s birth or tell you they were sorry? Wil lives outside of the above definition no matter how broad, wiggly or faint that line is.
There is a 5-year-old boy with autism that I work with. When we are out in the hallway transitioning from the classroom to a special, he likes to pretend he is a chameleon. He’ll push himself up against the wall and tell me he’s invisible; that I can’t see him. It’s a stall tactic, of course. I play along, asking where he went. I ask passerby’s in the hall if they can see him. The passerby’s smile, look back and forth down the hall and put their hands up. “I can’t see him anywhere.”
One day I thought of circling my fingers around to my thumb and placing my circled hands up to my eyes like glasses. I twisted my hands saying, “Click-click-click. I’m adjusting my invisibility goggles. Ahh, that’s better, now I can see. Hey, there you are!”
Raising Wil is like wearing invisibility goggles. I never knew this whole new way of seeing things was always available to me until I had a reason to care to see it.
I made my way through life, thinking the thoughts I did, defining things the way I did, without much further thought. I’d look up, I’d look down, and if things didn’t work out the way I wanted them to, I’d make them conform to my definition of what worked for me. My definition of “right.”
But what is right? What is normal? According to whom? Even if we don’t want to, we all have innate definitions of what these words mean to us.
Now I believe a better question is, What is? What is right in front of me? Am I seeing it for what it is?
Click-click-click.
My answers to these questions will forever be limited by my own vision; my own versions of right, my own versions of what works for me. My answers, though, as limited as they are, always have room for expansion. My view is no longer static, but fluid. There is always another level to view, another perspective to consider, another evolution to realize.
Raising Wil, I quickly realized I had to be fluid in my learning or I’d go crazy. The perspective I had at the time of his birth was not conducive to raising a child with Down syndrome. But here I was. It didn’t work for me, but I needed to make this work for me.
I realized then that I had a pair of invisibility goggles burning a hole in my pocket waiting for me to notice them. When I did, I never looked back. Invisibility goggles don’t work in reverse. The just look deeply inward, and expand outward.
'WIL'ingness = Willing to Embrace Extra in Life 