“Oxonya,” Wil whispered in my ear.
“Oxonya? Is that someone in a movie?”
“Ugh, no!” Wil said. He leaned again to whisper in my ear, “Oloxonya.”
“Alanya?”
“Moooooom!”
“Sorry, Wil. Can you say it out loud instead of whispering it?”
He leaned in to whisper again, “Olllazanya.”
“Oh, lasagna!”
“Yes, Mom, geez.”
“Wil, say l-l-l-l asagna.” I said emphasizing the “L.”
“Oh that’s silly mom. Lalalala. That’s not how you say it.”
Wil was busy packing his backpack. Then he walked up to me and told me what he was doing and walked out the door. I didn’t understand fully what he said. So I watched him walk down the lane of our back field. If he turns right, that means he’s going to the river. If he turns left, he’s collecting sticks. He turned right.
I threw on a coat and gloves, hopped on the 4-wheeler, and sped down the lane. I hopped off and started making my way from our property to the woods.
But, before I reached the woods, there sat Wil – cross legged in the grass. His backpack was open, the soccer ball he packed had rolled out. In front of him was a spiral notebook. He held a pen in his hand and had written one word: Ashley.
“Hi Wil.”
“Hi Mom.”
“Whatcha doing?”
“Mom, look.” He started writing.
“Ashley summer? Yes, we’ll see Ashley in the summer.” He nodded and continued writing.
“Swimming with Lila? Yes, you’ll have fun swimming with Lila.” He nodded then wrote again.
“Eating? I know you love to eat!” He laughed and wrote again.
“With Mom and Dad. Yes, Wil, that’s right.”
“Mom, look.” And he wrote “I love you.”
“I love you, too, Wil. Very much. I’m also very proud of you.”
He smiled at me, and signed his name.
“I’m cold, Mom.”
“I bet. I’ll give you a ride home.”
Words can’t describe. ❤️
I wonder sometimes, do we view individuals with special needs as angelic, more so than our typical selves, because we do not apply the same societal pressures to individuals with special needs as we do to ourselves?
We see individuals with special needs for who they are.
For the love that they share.
For the hugs that they give.
Every achievement we celebrate for the dedication put in. But the achievement is not attached to the value of their person. They are loved for the whole of who they are regardless.
I wonder what kind of world this would be if we viewed ourselves through the same lens?
And conversely, discrimination exists by those who view individuals with special needs as less than because they only see the world through achievement. They disregard the love, the dedication, the whole of the person for a top grade or an occupation. I wonder what kind of world this would be if this view were broadened, expanded to see the whole of a person.
I wish I could say I always looked through the lens with the broader view. I can not make that claim. Life experiences have allowed me to upgrade my choice. And now that I have upgraded, I realize I’ve had the choice all along. It wasn’t the upgrade that cost me. Rather it was the narrower view.
Down Syndrome Awareness = Hello, meet my child. Once you get to know him, you won’t be so scared of him anymore.
Books upon books. Blogs upon blogs. Stories upon stories. As varied as they are, the message is, Hello meet my child. Know my child. Do not fear my child.
But fear is a big emotion to conquer. Fear doesn’t allow one to look at the whole of the story, rather a very narrow and skewed portion. Only love and knowledge can broaden the view.
And so, we parents, caregivers and educators continue on. Books upon books. Blogs upon blogs. Stories upon stories. We never tire, fueled by the truth and love of our children, enabling us to see the whole of the story in technicolor view. Fear can not live there. Only love.
Hello, world, meet my child.
Wil had a quiz to study for last night. We decided together that he would study while Katherine was at CrossFit. If Wil comes along to CrossFit for a task such as studying, we typically go to Bigby Coffee and he gets a hot chocolate with sprinkles. After a few sips, some silliness and conversation, we get down to the business at hand. Last night he said no to Bigby.
“Where do you want to go?”
“Hmmm, don’t know.”
“How about McDonalds. You can get a chocolate shake, then we’ll study for your quiz.”
“Ok.”
When we arrived at McDonalds, we had an hour until we needed to be back to pick up Katherine. Wil made a quick scan of the play area. It was empty.
He tugged on my arm. “Mom, in there.”
“Ok, let’s order your shake first.” We walked up to the kiosk. He squinted.
“Put on your glasses, Wil.”
“No.”
“Here, just try.” I handed his glasses to him.
“Hey, I can see it.”
“Um, yeah silly. That’s why we like you to wear your glasses. You can see so much better.” He wears glasses for reading and occupational therapy, other than that he has no interest in them.
Wil made his chocolate shake order through the kiosk, reading every word on the kiosk proudly out loud.
“Great job, Bud.”
After the order was complete, he pulled off his glasses, and headed toward the play structure, his arm extended back to me with the glasses.
After playing in the play structure with lots of “look at me’s!” two other young boys entered. The increased noise level was enough for Wil. He made a quick exit. I followed him with his shake. He picked a table in the main area and we took a seat.
“Here are your glassesWil. Let’s do a little studying now.”
The subject of the quiz was the Empire of Ghana. His teacher condensed the lesson for him. After we got through the definition of Mali, the Niger River and Mansa Musa, I asked him, “What was the major trading city when Mali was at the height of it’s power?”
“Timberlake!”
“Wil, Justin Timberlake is a singer. He’s the voice of Branch in Trolls.”
“I see your true colors shining through, I see your true colors and that’s why I love you…”
“You love Trolls.”
“You?”
“Yes, I love Trolls too, Wil. And Justin Timberlake is a really good singer, and dancer. But the answer isn’t Timberlake. Let’s try again. What’s the major trading city?”
“Timberlake!”
“Wil.”
“Timberlake!”
“Dude, come on.”
“Timberlake!”
“Ok, it’s Timbuktu. Can you at least say Timbuktu for me?”
“Timberlake!”
“You are so silly. Do you want to watch a Timberlake video?”
“Yes, Can’t Stop the Feeling.”
We watched Can’t Stop the Feeling and True Colors. Then we got back to the quiz. I jumped ahead to the next definitions, we got through those fairly smoothly with the exception of mosque. He looked hard at the word and came out with “message.”
“Wil, good try, it’s mosque.”
“MosKE.”
“That’s right, say it again.”
“Message.”
“Honey, you just had it right. Mosque. Say it again. Mosque.”
“MosKE.”
“Good, again.”
“MosKE.”
“Good, ten times fast.”
“MosKE, MosKE, MosKE, MosKE, Ugh, ok Mom.”
“You got it.”
Then circled back to Timbuktu.
“Ok, Wil, what was the major trading city?”
“Timberlake!”
“Can you at least tell me you will answer Timbuktu on the quiz?”
“Timberlake!”
His swim instructor was showing him how to roll over from his stomach to his back in the water. He’d start, face down, floating, then twist himself around. As he made the twist, he’d flail slightly, body twisting hard, with a little kicking to get himself all the way around.
He’d pop his head to the surface, his clear-lensed wide-eyed goggles—he affectionately calls “Frog power” when he puts them on—showing wide eyes underneath. His breath sputtering, spitting out water. Then catching his breath, laying on his back, realizing he succeeded, a huge smile spread across his face.
Again, he’d twist, kick, turn his body around. Low muscle tone making the task challenging, his observing mom thankful for the important core strengthening that was happening. Again he surfaced, sputtering, eyes wide, spitting out water, catching his breath. Then the smile. Big. Proud.
Again, he’d twist, turn, kick. Sputter. Smile.
Again, again, again.
Each time, the twist would come a little quicker. The sputtering less. Soon, the smile was already there, shining underwater, revealed as he completed the turn and lay on his back. Floating.
And his observing mom found herself smiling too, thinking isn’t life just like that?
“Slippery rocks ahead!” It was a dark, pre-dawn August morning in Michigan’s Upper Peninsula. Headlamp lights bounced off the rocky trail. It had rained the night before, so the trail was slick. The jutting rocks and roots mixed with the elevation proved challenging without throwing in the darkness and slickness. Even though I had read about this trail and watched a video of the race, I was only partially prepared. Traversing the trail with my own feet was the only way to truly be in the know.
I have made no hidden remarks about puberty with Wil mixed with Down syndrome. I could have guessed what was ahead, I had read enough and prepared myself enough, but there are certain things you simply need to experience to fully be in the know. I talked to Wil’s teacher consultant for ideas in working with his new behaviors associated with puberty–she has worked with multiple children with multiple diagnoses. I noticed the first thing she did was ask questions. Lots and lots of questions. I respected that greatly. She wanted to know all about Wil and his behaviors. She didn’t make assumptions based on him having Down syndrome. Though she is someone “in the know”, it was important for her to know and understand Wil.
The other morning, Wil was being extremely willful. It took him a full 30 minutes to get out of bed and ready for school. The pattern continued through the day into the evening. He didn’t want to go to Katherine’s CrossFit class that night, but Elizabeth was at basketball, and Matt was out of town, so going to CrossFit was his only choice as he is not able to stay home alone at this point. Katherine and I finally convinced him to get in the car, with the promise of a stop at Bigby Coffee for a cup of hot chocolate with sprinkles. I took a deep breath when we got in the car, played some music, and all seemed to be going well. After dropping Katherine off at Crossfit, Wil and I headed to Bigby Coffee. I ordered his hot chocolate and he drank most of it. We shared a conversation, with a few pauses and prompting. When it was time to pick Katherine back up from CrossFit, he refused to leave. Again, with lots of prompting, I finally got him up and into the car. When we arrived home, he had some time to watch tv and then go to bed. Again, he refused. Thankfully, we didn’t have anywhere to go so I walked him to his bedroom and told him he could stay in there until he was ready to put on his pajamas. This is usually a successful tactic as it gives him time to unwind and feel back in control of his situation. It can take anywhere from 15 minutes to an hour. Well, it took an hour. By the time I got Wil into bed, I wanted to go to bed too I was so exhausted from the constant negotiations and patience required the entire day. Though I knew I would have fallen asleep the moment my head hit the pillow, I felt the need to unwind and feel back in control of my situation, too. So I sat down and read a book, as exhausted as I was, until I felt calmed down, then I went to bed. And indeed, I fell asleep the second my head hit the pillow.
When Matt returned to town, I told him about this experience. How the entire day, Wil had been willful. How I had tried to get him to communicate, but he was being obstinate with anything I did.
“Hmm, sounds like a teenager to me,” Matt said.
That next week, the kids had Friday and Monday off for President’s Day weekend. On Thursday morning, Wil popped out of bed singing, “Friday, Friday, Friday!”
“Actually Wil, it’s Thursday.” I replied.
“No, it’s Friday, Friday, Friday!” He continued singing.
“Huh, you know, you are right. In school days, this is your Friday. Hooray Friday, Friday, Friday!”
On the flip side, Tuesday was not so celebratory. After having Friday and Monday off, Wil was well out of his routine. He refused to get on the bus after school on Tuesday and even took off outside for a brief period. His teacher was on it, rallied him back in, and when I entered the school office to pick him up he was fairly cheerful, no doubt for his bout with fresh air and freedom.
“Wil, you were all excited to ride the bus home when I dropped you off for school this morning. What happened?”
“Mondays are hard, Mom,” he said. I almost said it was Tuesday, then caught myself. In school days, it was his Monday. And yes, I agree, Mondays can be hard.
Refusing the bus ride home on Mondays is more the rule than the exception. If I were to graph his week, it would be an upward slope. As the week goes on, he gets back into the groove of his routine, and though no day is smooth sailing, his days grow progressively smoother and more productive. Wil earns stars for doing work in each of his classes. Wil earned a mere 4 stars that Tuesday, but doubled that count by Thursday. On Friday he promised to uphold that double count of stars. And that he did. Friday, Friday, Friday!
When Wil was a baby, I read multiple books about Down syndrome. First books about babies with Down syndrome (which is an actual title of one of the books) up to books about teenagers and young adults with Down syndrome. I wanted to put myself in the know. I needed to put myself in the know. There were much too many unknowns in the distant future when I learned of Wil’s diagnosis. Reading books helped put me in the know–or so I thought. I really was only partially in the know. Because you don’t know what you don’t know until you do know. Now that I know, I know there is much more knowing to come.
When I trained for the 50-mile trail race in Michigan’s Upper Peninsula, I approached it quite similarly. I read as much as I could about ultramarathons. The terrain I was used to in the lower Peninsula was much different from what I would experience in the race. Where the race’s trail was rocky with steep elevation, the roads I was used to were sandy with rolling hills. I would also start the race in the dark. I wouldn’t be able to see what was ahead of me except for what was illuminated in the small, thin beam of my headlamp. I wanted to be in the know. But until I hit that trail with my own two feet, I was only partially in the know.
At the beginning of the race, we runners were all backed up along the single track trail in the dark pre-dawn with the calls of “Watch out, slippery rock ahead!” We made our way gingery, step-by-step-by-step, careful not to twist an ankle this early in the race. As the dawn spread, and the view of the trail opened up in front of us, we proceeded more confidently, and found the paces we had trained for. Even so, there were many surprises along the way. Along the shore of Lake Superior, I made good time. The ground was a soft bed of pine needles. I enjoyed the view, the soft footing and the flatter terrain under my feet. When I hit Hogback Mountain, I stopped and looked up at the tall climb. I had read about this part of the race, but now I was about to experience it. I was on hands and knees, climbing, crawling, scaling looking for the little orange flags stuck in a crevice, that led the way, so I wouldn’t make a wrong turn. I climbed next to others, and when we’d spy a flag we’d call out, “There’s the flag, this way!” And we’d creep and crawl until we found flatter footing and took off again.
As much as I value preparation, no one could have told me how it felt to know the soft bed of pine needles under my feet. Then, to come to an abrupt halt of a hard rock hands and knees climb, progressing at a snail’s pace, eyes peeled for a sign I was heading in the right direction–all the while knowing, if I made a wrong turn, I wouldn’t make the time cut-off, and will get pulled from the race I trained so hard for. As such, you can’t read about a child with Down syndrome’s behaviors and expect to know what exactly they are communicating without being able to ask questions specific to that child. You can’t know the free flow of milestones being hit, closely to on time, and then bam, a mountain to scale–seeking out any flash of orange to guide you on your way. You can’t know the patience it can take, and also to fully understand when that very patience breaks, until you’ve been through it yourself—all the while savoring your journey, no matter how confusing, exhausting, or exhilarating it may be. As prepared as we may believe we are, we don’t really know until we’ve traversed the path with our own two feet.
I have learned a lot from Wil, but Wil is not a lesson to be learned. Wil is not an object of advocacy. Wil is a 13-year-old boy. Wil has 47 chromosomes and Wil is also a teenager. Wil has tough Mondays and cheers on his Fridays, Fridays, Fridays! Wil has 4 star days and 8 star days. Wil’s week goes in an upward curve quite predictably, but what happens along that curve is anyone’s guess. Sometimes it’s a protest on the basement stairs and sometimes its as close to smooth sailing as he gets. Sometimes I can navigate the journey on my own, and sometimes it takes a team. What I know about Wil is what I know now. Preparation is key, and so is the reality that tomorrow is anyone’s guess.
The only advice I can offer up to this point is there are Slippery Rocks Ahead! I can’t tell you where until I cross them myself. But when you get there, who knows, the climate may have changed and you may sail right through. Keep your head up, always work toward an upward curve, and ask lots of questions. The little flash of orange is always there to lead the way, though you may need an entire team crawling, scaling and putting one hand and foot in front of the other to find it. Mondays are hard, even if is a Tuesday, and celebrate every Friday, Friday, Friday! even if it is a Thursday. Be weary of those who claim to know the answers–only those who ask questions truly seek the answer. Labels define us, and preparation prepares us, so we feel that we may know. And yet, each day is it’s own, and each of us is our own–so we only partially know. You don’t know what you don’t know until you do know. Once you do know, you can betcha it will change.
