Not so long ago, if anyone gave Wil choices he’d pick the last choice offered.
This morning I asked him, “What dipping sauce do you want? Ranch, mustard, ketchup or honey mustard?”
“H — Ranch.” Wil corrected his auto-response for what he wanted.
Life is full of tiny miracles embedded within everyday occurrences. Our kids with disabilities slow life down just enough to reveal these hidden gems for the light they are.
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?
Wil jumps on the trampoline. Free. Fun. Full of joy. His play is not forced; nor is it self-conscious. He hoots, he hollers. He’s in the moment. When tiredness sets in he rests. He sits on the black circular mat, looks around, and soaks in the feeling of his heart relaxing. This is not a conscious action. It’s a feeling. When his breath is caught he resumes his play. He resumes his laughter. The cycle of play and rest continues, not in perfect time, but perfectly all the same. His time on the trampoline is conducted all on his own time. And if someone wants to join in, the net is always open. His play is not pushed or forced; his rest is not laziness. It is a balance of body and mind in time and always open to friendship.
When I watch him, I wonder, can I be as free as that again? Can I still truly play? Can I still hear my inner compass? Can I be purposeful without pushing? Can I still allow my heart to rest without inviting in laziness? Society is so loud today. So many voices telling me what is right and what is wrong.
I went to buy some paint yesterday. As I walked in the young man behind the desk had very low energy. I still gave him a hearty hello and went on my business. When I went up to the counter he still had very low energy. My instinct was to be low energy back, as wasn’t it his job to welcome me to the store? I was spending my money there. But then I thought, “No, that’s an instinctive reaction to match like for like. You have a choice. Just play today. Unzip the net of the trampoline, and invite him in to play. Even on our hardest days, even if we don’t want to play, it’s still important to offer the invite.” So I shared my smile and kept my spirits high as he rang up my items. I didn’t force my joy, I just held a natural joy within me. The man then took out a $5 coupon and scanned it to my order. Maybe he used that coupon on every order, but I received it as the special $5 gift it was.
“Thank you for the coupon!” I said. He looked up at me quizzically. There was a pause. Then he smiled back at me. He accepted my invitation to play.
This summer I’m working with a student who turns very aggressive immediately. He punches, kicks, and swears. He’s called me a freak and a bitch and he’s only 6 years old. This challenging behavior is not in my wheelhouse. I’m raising Wil, a happy, joyful, and stubborn child. He’s not physically or verbally aggressive. My learning curve this summer has been high. But I’m learning a lot as the teachers around me have a wealth of knowledge and are very supportive. They’ve invited me to play.
Being on constant guard with this student is wearing at times. I need to be between him and the other students in case he blows up at a moment’s notice. One day he was particularly on edge. He enjoys going to a room with a swing and a crash pad. So I asked if he wanted to take a motor break there and he agreed. After a few rounds on the crash pad, he laid down and started pushing a bookshelf with his feet.
“Please don’t push on that. It’s not safe.”
“Why not?” He asked defiantly. He was trying to push my buttons. Fortunately, the change of environment was a break I needed too. I was able to think more clearly.
“Because it could tip over. It’s not secured. I care about you and don’t want you to get hurt.”
His attitude lightened completely when I said I cared about him. That was all he needed to hear. With his demeanor change, I also changed because my learning and understanding deepened. I had all the tools that worked with him written down. All the things to say that de-escalated his behavior. But this was off the cuff. It was not on any script. It flowed from my mouth not from thought but from something natural within me. If we had still been in the classroom with both of us stressed, I would have resorted to the script because I would not have been able to access that part of my brain. We would have both been in fight or flight. But now having had this experience, a mental block from my naturalness has been removed. I am now better equipped to handle higher stress situations, and inner knowing will have more space to come through to help this student and future others.
I’m learning to go back to what I already knew while I learn from what I didn’t know. I now recognize $5 gifts as special to me even if they are plentiful for every customer; valued gifts expand well past any monetary amount. I now will change venues when my heart needs rest so I may better serve both myself and others with a calmer heart. I will hold my natural joy and extend it – the shared energy of the giver does not deflate one and inflate the other. Just watch Wil on the trampoline. The joy he feels could light up the world.
“It has chocolate chips in it, Mom.”
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.
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.
'WIL'ingness = Willing to Embrace Extra in Life 