What’d You Say?

“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.”
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No Words to Describe the Words that Do

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. ❤️

Upgrading the Lens

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.

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The Morale of the Story

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.

Remembering Leading Hands on the Journey to Acceptance

Reading a passage on a special needs social media page, I came across a sentence about our kids’ first friends being their therapists. Tears immediately flowed with that sentence. Have you ever found your emotions processing words faster than your intellect? My heart felt the words before their literal meaning reached my brain.

Then when my brain kicked in, I thought, “here I am, 13 years into this journey, fully embracing this journey, and still find myself crying at the drop of a hat over an early memory.” No matter where you are in your journey of acceptance, even if you have come full circle, you never, ever forget your early days of passage into what you now embrace.

In the early days, I didn’t know many people who knew what this life was. That is likely true for many. Those around you either don’t know what to say, or try to console you. So, those first steps are full of so many questions, but you are unsure where to direct them at that point. The therapists, for many of us, are those first people to ask real questions of. The therapists, for many of us, are our first solid signs of hope. The therapists, for many of us, give us more than words. They give with their actions.

Wil’s first therapists were on the side of acceptance I valiantly wanted to find my way to. In the way they were there for Wil, they were also opening the passage to me. I could ask very real and upfront questions, and they responded with very real and upfront answers. They were people in the know. And they cared. I may not have been there of my choosing, but they were there because this was their chosen life’s work. That is some powerful stuff.

Wil’s therapists moved Wil’s limbs and motivated Wil to learn in their knowing ways. I watched the ease in which they did this. Then I would try. I immediately failed. What looked so easy for them was so very new to me. They patiently showed me again and again. And again and again. In the process, I learned the beauty of patience–that not all things come when we want them, but in their own time. As Wil was learning, though he took many trys, there would be small advances. Advances I never would have noticed if I already knew what to do. I learned there is beauty in the space between the advances. I learned there is never an ordinary moment. What we call ordinary means we are glancing over too quickly. I learned that not everything that comes to us is natural–we need to go through the process to acquire our second nature.

I learned my second nature through Wil’s therapists. I learned patience through Wil’s therapists. I learned to pay attention to the space between the advances with Wil’s therapists. I crossed the bridge to acceptance by the leading hands of the therapists.

Though I have come full circle to acceptance, within that circle there are still the broken parts I pieced together to create the whole. The emotions my heart registers before my brain, never forgot those broken parts. They are the building blocks that I ever so learningly, patiently, lovingly and dedicately worked to link together with the leading and helping hands of Wil’s first therapists, Wil’s first friends, on this journey.

Thank you, always for helping put those pieces together Wil’s very first therapists:
Theresa, Janet, Cathy & Shelly

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Timberlake vs. Timbuktu

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!”

Play, Pray and Don’t Say Beer at School

I ran into Wil’s room and started cheering, “It’s Friday, it’s Friday, it’s Friday!”

He rolled over, giggled, and pulled the covers over his head. I put my hands on his back, and pushed down, then released, pushed down, released, over and again, bouncing him on his bed, singing, “It’s Friday, it’s Friday, it’s Friday!”

He laughed, craned his head up to look at me and said, “Ok, ok, ok, Mom, just calm down.”

“I will if you get out of bed.”

Still laying on his stomach, he scrunched his body up, his tushy sticking up in the air. I gave it a swat and said, “Get your little booty out of bed.”

“Look Mom, I’m an inch worm” and he wiggled on the bed.

“You are a very cute inch worm. And you are going to be a late inch worm if you don’t get dressed soon.”

“Ok, Mom, hugs.” He sat up and reached out for a hug. As I leaned in to give him a hug, he bear hugged me. I lifted him up and out of bed. He curled up his legs, so his feet wouldn’t touch the floor. I felt my neck and back sinch up, and leaned him back over the bed.

“Dude, you are not little anymore. You can hurt Mommy doing that. Ok, up and at ’em!”

“Huuuuugs.” I hugged him again, then he laid back down in bed.

“Wil, up, up, up!”

“Oh, Mom, too much energy. Hugs.” I hugged him again, and pulled him up.

“Ok, Mom, go.”

“You promise to get dressed if I go?”

“Ugh, yes, mooooom.” From a playful inchworm into an irritated teenager in seconds.

We decided what he wanted for breakfast– “Mac n cheese?” “No.” “Sandwich?” “No.” “Eggs?” “No.” “Oatmeal?” “Yuck, Moooom.” “Ok, hot sandwich?” <pause> “Yes, and tomato soup.”

As I left his room to make his breakfast, I pulled the door almost shut, so I could peek through the crack to make sure he was getting dressed. After putting the sandwiches on the stove, I quietly walked up to his room and peeked in the crack of his door. He was talking to himself about his outfit. He always puts his pants on first, then his shirt. If I’m ever helping him get dressed after his swim lesson, and I forget this rule, he looks at me like I’m a crazy person, then says in a very matter of fact way, “Pants first, mom, then shirt.”

Wil always has a theme in mind when he gets dressed. On Monday, he emerged from his room, threw his hands up in the air and proclaimed, “Grey Power!” He, of course, had on a grey hooded sweatshirt with grey pants. He also happened to match the winter sky that day. I thought, that’s one way to make the most out of a grey day. Especially on a Monday. Unfortunately, even though that day started on a high, it ended on a low. His team and I weren’t sure of the triggers, but he refused to work in his afternoon classes and I picked him up after school rather then him taking the bus.

Today he walked out of his room with a Luke Bryan concert t-shirt his Aunt Carrie bought him. “Look at me, Mom!” (Last night watching Jeopardy, I said to Wil, “if they had Luke Bryan as a category, you would win.”

“Really, what?” He ran up to the television, mistaking my
comment for Jeopardy having a real time Luke Bryan category.

He yelled out, “Kill the Lights!” “Here’s to the Farmer!” “Strip it Down!” “M-O-V-E!” “Drink a Beer” then, under his breath, “No, don’t say that at school. Don’t say beer at school.”)

Wil sat down to eat the breakfast I made him–two warm ham, cheese and spinach sandwiches on whole wheat buns and bowl of tomato soup heated to a lukewarm temperature–he doesn’t like anything hot.

“Which shoes do you want today, black or brown?” This is always a consideration each morning and he enjoys making this choice. The black shoes are his tennis shoes, the brown are a little dressier. Today he chose brown, even though he wore sweatpants. His Luke Bryan shirt must have had him feeling fancy.

When it was time to go, he still had half of one of the sandwiches left and some soup. Occasionally this happens, I believe on purpose, because he wants to bring some of his breakfast to school. I put his sandwich in a baggie with a plastic spoon, and poured the remainder of the soup into a thermos.

He pulled on his backpack, grabbed his baggie and thermos and we were off. He sang Luke Bryan songs the entire way to school. (When I’m driving by myself, I can’t listen to a Luke Bryan song. It’s lackluster without Wil’s backup.)

When I brought the car to a stop in front of the school, Wil bolted out with a quick, “Bye, Mom” and in his low muscle tone way, he ran without much bend in his knees, moving slightly side to side, his backpack bouncing on his back, baggie and thermos in hand. I sent up a prayer for his good spirits to continue.

Every day is a process, with or without a playful start. It’s fun when kids are younger, but now Wil is 13 years old. In many ways I’m thankful for his continued youthful spirit, and in other ways the process gets tiring after so many years. His independence is growing in leaps and bounds, yet still, he requires lots of encouragement to get on with his day and with extracurricular activities. I’ve tried to rush him, and it backfires each time. In fact, a little reverse psychology can go a long way. I used to say, “Quick like a bunny!” but now I say, “Slow as a tortoise.” He’ll start slow, find it to be funny, then get on to the activity.

While a playful start doesn’t guarantee a good day, my own personal calculations show a sharp rise in success with a playful start. So I play the numbers, inch by inch, each and every day. Once he bolts out the car door, in the mix with many other kids and experiences, it’s anyone’s guess as to what may trigger him to turn the day upside down or flip it back around and land right side up. That’s when a good team at school and prayers come in handy.

Give us this day our daily hot sandwich and tomato soup, as we start our day in play, may we keep our day right side up, and remember not to say “beer” at school. Amen.

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