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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This Is How We Do

This morning I said to Wil, “You have school today.”

Wil was sitting criss-cross applesauce on the couch. He had his lap desk balanced on his legs, upon which was a plate and his breakfast sandwich. Mickey Mouse Roadster Racers played on the TV.  Wil turned his head to look at me, careful to keep the lap desk perfectly balanced. With his mouth full of breakfast sandwich he yelled out, “Noooooo!”

“Oh, wait, wait, sorry, I didn’t mean you are going back into the school today. I meant you have your Google Classroom call today. It’s Monday. I thought you may have forgotten since we haven’t had a call since Thursday.”

“Oh, ok.” And he resumed chewing and turned his attention back to Mickey Mouse Roadster Racers.

In a way, I was relieved by his immediate refusal to go to school. In the beginning of this pandemic situation, Wil was very upset he wasn’t going back to school. He wanted to see his friends. It was also very close to Spring Break. He then thought it was Spring Break, but the problem with that is we were going to Florida for Spring Break. We cancelled our flight due to the pandemic. As with any change in schedule for Wil, we really talk it up so he’s prepared. We had been talking about the Florida trip to see Grandma Leigh and Grandpa for quite awhile. How he would swim every day with Grandpa. How he’d go for walks with Grandma Leigh. Everything we had talked up over time, we now had to repeatedly break down in explanation.

Wil misses his friends a lot. Zoom calls are both helpful and hurtful. He loves seeing his friends, but then he misses them more when the calls are over. So we decided we’d make a plan. A plan to see his friends in the summer. That way he had something to look forward to. Now, if it’s a warm day, he asks me if it’s summer. We look at the calendar and take note that it’s not summer yet, but every day we are getting closer.

I’ve been lax with Wil on schoolwork during this time. We have been very active outdoors. In many ways, Wil is an old-fashioned kid. He enjoys and learns most from functional movement. He’s very observant of what is around him. I’m always learning when I take walks with Wil. He doesn’t miss anything. He loves collecting sticks so he takes note of different types of bark, how two sticks sound hit together (one more hollow than the other), how certain sticks break and others are strong. He truly does take time to smell the flowers and take in what is around him. If there is a sign to read while outdoors, he reads it aloud to me. We were watching the movie, “Onward” last night, and there were a written signs and notes. He read all of them. We’ve had a natural learning environment, of sorts.

I’ve made him aware school work is to be done, but I haven’t forced it or created a strict schedule. As the beginning of this situation was so confusing to him, getting Wil to sit down to homework was a long stand-off.  I weighed the checks and balances and decided at that time, it just wan’t necessary to have a stand-off at that time. We would take our time and find our way through this. I let him know what school work was available to do, and then he chose which options. In fact, one night at 8pm, he looked at me and said he wanted to do school work. It’s not exactly what I wanted to do then, but I wasn’t about to turn him down. So he did about 30 minutes of school work and then he went to bed. For some kids, a strict schedule brings security. For some kids, if you get off a schedule you’ll have a near impossible time getting them back on. It’s a very individual process. I decided we’d do our natural learning and then the time would reveal itself when more of a regular schedule was needed.

There are memes swirling around on social media from Phd’s in psychology about it being ok to be lax with school work right now. That it’s good for your mental health. That we as parents have a lot going on and we are not teachers. And conversely, there are memes swirling around from other Phd’s stating statistics on the learning our children will lose if we don’t stay on a schedule at home. They are likely both right. But here’s one thing I’ve learned from raising a child with special needs. There is no “how-to.” It’s, “this is how we do and maybe it will work for you too.”  I’ve found taking a deep breath, stay focused on the goal, and rolling forward in our own timing is what works best for us. Suggestions are great. But be careful with assumptions that are made with those suggestions.

I’ve seen it said that this situation is the same for our kids with special needs, that we are all confused. I’d agree we are all confused, but I don’t agree it’s the same. I believe that by saying it’s not the same, that’s interpreted as a bad thing. But it’s not a bad thing. It’s just different. I’ll never forget when I met a school psychologist and he said, “When I was in school for this job, I heard people with Down syndrome were stubborn. And I thought, well, so what? Lots of people are stubborn. Then I started working with people with Down syndrome. And I realized there is a whole different level of stubborn.” We both laughed at that. Because it’s true. It’s not bad, it’s just a different. And those differences don’t have manuals. Ask any special education teacher or parent. There is no true “how-to.” There is “this is how we do and maybe it will work for you.”

So this is how we do–Step 1: A loose structure of time outdoors mixed in with chores, some reading or online work, have been effective. This has kept the momentum rolling forward. However, with Wil’s reaction to going to school this morning, and with our day to day life, I’m now seeing that Wil has begun acting less confused and disappointed about all of the changes in his life. He’s begun to settle into a new normal. Though Wil still wants to see his friends, in person, and he still wants to go to Florida, he’s come to terms with our current situation. It’s now time to schedule blocks of specified school work. So this is how we will do–on to Step 2. 

When Wil finished his breakfast, he set his lap tray aside and walked behind the chair I was sitting in reading. He leaned his chin on my head, and wrapped his arms around me. He took a deep breath in and said, “Ahhhhh, what a beautiful day.”

Let’s all take a collective deep breath with him, and go on with our day, rolling our own way. This is how we do.

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If We Really Want To Change the World

FDAD6FC0-E4D8-41C5-8351-0F31377C8D35There are many beautiful pictures of our young children with Down syndrome. Their bright, shining smiles. Their eyes that truly sparkle. They tug at our hearts. They pull us in. They truly are special. They will change the world, we proclaim. And we mean it. This is a story of embracing acceptance and running full speed ahead with it. Those around us are drawn in by the bright, shining smiles and sparkling eyes. Those around us cheer us on. It is a story of triumph we all feel good about. This story is one of acceptance, and once this acceptance is embraced, we live happily ever after.

If we really want to change the works, where is the rest of the story? Where are the pictures of these shining, world-changing children as teens? Going through puberty, with pimples and hormones? Where are the pictures of our world-changing children facing the social isolation many teens go through and then some because of communication processing barriers? Where are the parents navigating this with very few pictures and stories to lift them as they did when their children were younger?

If we really want to change the world, where are the stories of these shining, world-changing children as adults? Unless these beautiful children have grown to land modeling roles or started a small business, we hear nothing more from them.

If we really want to change the world, we need the rest of the story. We need to see how our kids navigate puberty and social isolation. How kids with Down syndrome’s behaviors change when mixed with hormones, communication barriers and cognitive delays. How there is no “American Girl” for puberty book for our kids.

If we really want to change the world, adults with Down syndrome need to be seen for the valuable individuals they are. They don’t need to own a store to do that, or fill the cover of a magazine. Those accomplishments are to be applauded, but so is our friend who is volunteering at the food bank or the library. The steps it took to get them there may be downright heroic. But we don’t know that, because many of us don’t know the rest of the story. When adults with Down syndrome continue to be seen as “cute” they will never been given the value and respect they deserve.

If we really want to change the world, we need to see the rest of the story. The book full of fresh new chapters each and every year. Smiles with braces. Sparkling eyes that have grown crow’s feet. I know those faces forever tug at my heart. They will forever pull me in. Because I am dedicated to the rest of the story.