Just Friends Being Friends

“I was just wondering if Wil wanted to be part of the 7 dwarfs. We were thinking he could be Snuggly, Giggly, Silly, or Smiley! Considering Wil has all those traits!” I received this text from Ashley about Halloween costumes. Ashley and Wil, now in 8th grade, have gone to school together and been friends since preschool.

I read Ashley’s text aloud to Wil. He jumped up and responded, “Yes!” Wil chose Smiley, then I received another text from Ashley: “Or Seeger was thinking he could be the prince if he wanted to.” (Seeger is another good friend of Wil’s from school.)

“The prince!” Wil said without an ounce of hesitation. Which is quite apt, as Wil’s friends, who are planning a Snow White-style Halloween, are all girls.

Our Down Syndrome Support Team holds an annual Buddy Walk the last Sunday of September to raise awareness and acceptance for individuals with Down syndrome. With the pandemic, the decision was to hold a virtual event. Wil and his friends were not to miss out, so we held a small, local walk to which about 30 friends participated in. Wil, of course, walked with his close buddies, Ashley, Seeger, Lila and Sarah. At one point during the walk, Wil decided he needed a break and sat down on the sidewalk. Wil’s friends stopped and cheered him on. With their encouragement, Wil jumped up and they all started running. The friends joked it was the “Buddy Run.”

Near the end of the walk, we climbed to the top of school bus loop. Once at the top, Wil’s friends ran down the steep, grassy hill along the side of the bus loop. Wil remained at the top, looking trepid. Once again, the cheering section arose. His friends’ cheers nudged Wil over the edge and he tore down the hill. Once united, the friends jumped, laughed and cheered in a circle. It’s just as rewarding to be the cheerleader as it is to be the cheered.

Last year, I was talking to Ashley after school. She told me about an activity in gym the group of friends enjoyed participating in together. Then she said Wil grew tired and laid flat out on the gym floor. She shrugged her shoulders, smiled and said, “That’s just Wil being Wil.”

When Wil doesn’t have the words, his actions are his communication. Wil’s friends understand his language. Wil doesn’t judge others or create drama; it’s simply not in his arsenal. In that way, his friends are fully free to be themselves. If you are sad, he accepts your sadness without question. If you are happy, he accepts your happiness fully. If you feel goofy, he’s more than willing to join you in the silliness. If you need a hug, he has one at the ready. If that’s your clothing style, then it’s cool. To Wil, that’s just you being you.

As a parent of a child with special needs, I know first-hand the fight for acceptance. I also know first-hand that acceptance is quite fundamental: It’s just friends being friends.

Our Own Little Buddy Walk



The DSST Buddy Walk was virtual this year, but thanks to Wil’s amazing friends and this caring community, we had our own fun walk of about 30 people (and dogs!) in Manchester. Our local Steelegrafix LLC made our shirts this year and not only donated a portion of the proceeds to DSST, but also matched that amount! Manchester Mirror wrote an article about the event: http://themanchestermirror.com/2020/09/28/annual-buddy-walk-goes-virtual-for-2020/?fbclid=IwAR0_R7peFOfYsXal3REQWOTEXy-oZogfEFm6ps0SZ3y43ET1ofljqRZO11Q


Thanks to all who supported and/or walked!! If you’d still like to donate, Wils link is:
https://secure.frontstream.com/buddywalk2020/team/924124

Champs of the Day

Two weeks ago, I shared a story with you about our tubing adventure on Lake Lansing with friends Cheri, Randy and their son, CJ. Thanks to Cheri’s patience, Wil overcame his fears and very tentatively got on the tube with her. With much coaxing, Cheri convinced Wil to go for a very slow ride. Wil’s fear morphed into thrill that day, and he couldn’t wait to come back for another try.

Wil’s second attempt was vastly different from his first. Wil eagerly hopped on the tube with his friend CJ, who also has Down syndrome. CJ is very adept at water sports. He tubes, wakeboards, ZUPs – you name the water sport and he’s likely an expert. He’s also fun to watch as he has great enthusiasm and knows lots of tricks. CJ, thus experienced, easily got up on his hands and knees on the tube. Wil followed CJ’s lead and propped himself up on his hands and knees. We all cheered Wil on from the boat.Wil and CJ bounced over big waves and even went outside of the wake. Wil’s smile never faded. What a transformation from his first ride!

After the tubing fun, we were all hungry. We decided to make a trip to Culver’s for a bite to eat. Wil loves a cheeseburger so he was pumped up. CJ was also pumped up to eat a cheeseburger with his friend, Wil. Cheri and I exchanged stories how Wil and CJ can tend to swallow things whole, as it’s so much work to chew certain foods. (Many individuals with Down syndrome have low muscle tone, making chewing certain foods a challenge.) Cheeseburgers are one of those challenging foods for CJ. He typically removes the bun and cuts up the cheeseburger. This day, however, CJ was determined to eat a full cheeseburger complete with the bun like Wil.

CJ watched Wil (an experienced cheeseburger eater) devour his cheeseburger, then looked down at his own cheeseburger with doubt. Cheri reminded CJ he could do this and she helped him cut the cheeseburger, with the bun still on it, into quarters to make it easier to chew. CJ picked up a quarter and bit into it. He chewed it slowly and tentatively.“CJ, you are eating a cheeseburger!” Cheri cheered. CJ looked at his mom with a huge grin. It was an exciting moment and we all cheered CJ on. By the third quarter CJ was eating like a champ. In fact, Cheri had to remind him to slow down! He finished his fourth quarter and we all reveled in his accomplishment. Not a light in the room beamed brighter than CJ.With the power of friendship, that tube and cheeseburger never stood a chance. Cheers to the champs of the day: Wil and CJ!

~Photo credit: Cheri Vincent Riemer

~Thanks for sharing this story Manchester Mirror: http://themanchestermirror.com/2020/09/07/stories-of-wil-champs-of-the-day/

Opening the View

I’m embarrassed of things I said before Wil was born. I was ignorant. I just didn’t know. Now, when I hear or read certain words, I cringe immediately. My kids cringe immediately. We know better, thank God.
When words hurt, our primitive drive is to react with a fight. Eliminate that word! It is evil. Words are easy targets. They are tangible. Something to go to war on. But is it the word? Or the feeling behind the word? The feeling is in the soul of the word. Once the word is killed, the soul will live on. Like a disease, if the spirit of the feeling goes untreated, it will come back in a different form.
So how do we fight a feeling? How do you fight the spirit of something? Or is even putting up a fight the right thing?
Nobody had to fight me to change my mind. I was instantaneously in a place where I needed to listen. I needed to learn. All that I thought I knew, or better yet, what I thought I didn’t want to know about, was staring me right in the face.
I may have opened my mind over the years with life experiences without having a child with special needs. I already was a fairly open-minded person, but I still closed my mind to things I didn’t want to know about. But now, oh how I want you to see this place. I want so badly for you to understand what I once didn’t. I want you to see how incredibly amazing this place is. How full, vibrant and enriching it is. How you would never, ever think think to throw stones in our direction if you only knew.
I don’t want to fight ignorant feelings. I don’t want to throw the stones thrown at us right back at the thrower. I want to open eyes. I want to open ears. I want to open all senses to the beauty that is right here in plain view.
You can’t eliminate a feeling with a fight. But you can transform a feeling by opening the view to meet all of the senses.
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Wil’s Growing Independence

Lately, I’ve been thinking a lot about Wil as a young adult. Will he live with Matt and myself? Will he live independently with help? Will he have his own apartment with a friend? Wil is a very social person; he loves to swim, golf and hang out with friends. I know he’ll want to be involved in various activities as a young adult. Right now, with the pandemic, I’m always looking for ways to keep him active, healthy and interested in hobbies as there is less available. Recently, he had a virtual theater class with his Down syndrome support group. He greatly enjoyed singing and dancing with his friends he hasn’t seen for months.

Wil values his independence.  He takes walks by himself in our back field with our yellow lab, Woody. He calls these walks his “adventures.” While he handles most of his self-care on his own, he does not fully appreciate the dangers of traffic and strangers. He also doesn’t understand the value of money.  Over time, his understanding of finances and dangers may come. Or it may not. As I have not been gifted a crystal ball, what I can do is find ways to broaden his independence and foster his growth.

I thought Wil having time home alone with his good friend, Lila Harvey, would be a great independence booster for Wil. I asked Lila’s mom, Rebecca, if she would be comfortable with Lila staying with Wil for just over 2 hours without me home. Wil enjoys Lila’s company greatly, she is smart as a whip, and stands firm on her ground. She’s also very good at finding activities they both can enjoy; which is no small task especially for someone her age. I’m always impressed and thankful for their friendship. Rebecca and Lila were both on board.

When I told Wil he would be home alone with Lila, he looked up at me in shock, then said, “Yay!”

Wil and Lila both love music, so when Lila arrived, Wil got out his iPad and they started singing songs together. I left on that high note.

When I returned home, they were both racing their bikes in the driveway. Two pairs of mud-caked boots were on the porch and Woody was wet and muddy; his tail was a-wagging.

“Hi Mom!” Wil yelled out as he sped by on his bike. The scent of lemongrass bug spray hung in the air behind him.

“Hi Miss Christie,” Lila said, “we had a dance party then walked to the river. It was low and muddy, but we had a good time.”

I suppose in our own ways, we all tested the waters that day. Though our waters are not always crystal clear, they are good fun for jumping in and getting your boots muddy. I breathed in the refreshing scent of lemongrass hanging in the air as my son sped by at his own speed, his friend racing with him, and his dog’s tail a-wagging.

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In Sync

As Wil has gotten older, it’s clear he needs closer friends with Down syndrome. He has wonderful friends at school that love and support him fully. As the gap in abilities with his typical peers grows and social lives expand, Wil also needs to cultivate friendships with those whose abilities match his.

Manny’s family lives in the neighboring town, so his mother, Laura, reached out to get our boys together. Manny will be entering 9th grade, and Wil 8th.

When Manny arrived at our house, it was our second get-together. We had met at Portage Lake the previous week and a friendship was formed. Though both Manny and Wil had talked of this second get-together for days, when Manny entered our house he went to the couch and Wil retreated to his bedroom. They were overwhelmed.

I took a big sigh of relief. Why? Because this was normal behavior not for just one of them, but for both of them.

I coaxed Wil out of his room, and Laura coaxed Manny to show Wil the toys he brought. Manny won Wil’s heart by bringing him a can of Sprite to drink with lunch.

The two laughed and were silly with lunch, and that broke the ice. But after lunch, they separated again. Even this separation was refreshing to me as it’s usually Wil I’m coaxing while others wait. This day, we were all gloriously on the same page, even if Manny and Wil were apart. Manny’s older sister, Grace, was there, and she kept the conversation going engaging both Wil and Manny. Like Katherine and Elizabeth (who were at a birthday party), this is Grace’s normal, and she handles it, well, with grace.

Laura suggested a movie to start the ball rolling again. And roll the ball we did — Manny chose Hotel Transylvania 3 and we played a game where we sat on the floor and rolled the ball to each other. When the music in the movie played, that was the kryptonite to whatever was holding them back. Manny and Wil broke out their dance moves. Then Wil broke out his karaoke player and jammed to Luke Bryan while Manny jammed on his Bluetooth mic he brought from home.

After the jam session, we headed outside to the driveway to ride bikes. Manny tried Wil’s recumbent bike while Wil rode his bike with training wheels. The handles on the recumbent bike are what steer it. Manny is used to using an elliptical machine, so he was pumping the handles back and forth zig zagging around. I thought that was a smart technique. With a few more tries, he figured it out and was zooming around, even on the grass!

Then I took Manny on the 4-wheeler. He “woohoo’d” the entire time. The guy has a need for speed!

Soon it was time for them to go, and we said our goodbyes until next time. I talked to my sister that evening, and told her how great it is to have a get-together where the kids are on the same level. It’s something you just don’t take for granted.

A day full of stops, starts, zig-zags, and full speeds ahead — all the while, remaining gloriously in sync.

(Photo: Potato chip lips)

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Its Not Real…Until It Is

I would say this situation is hardest on Wil. He doesn’t understand as much as I’ve explained it. I’ve heard the response, “I don’t understand, either,” which I respect and appreciate. But Wil doesn’t understand what a virus is. We do know what a virus is, even not knowing all the details of this particular one.

In many ways, I’ve related this extended experience to living with Wil as an adult, should he decide to live at home. I’m the one he leans on, I’m the one he has to talk to, I’m the one to motivate his reading/speech/motor skills, and nearly 100% of his way to get to places. Many of his typical peers, in the coming years, won’t need this help and will be knee deep in their own lives. The importance of Wil making friends with those of his abilities is becoming more apparent and essential. I’ve had parents of adults with Down syndrome tell me of the limited opportunities and activities for their kids. They are their kids’ anchors and a great part of their entertainment and continuation of learning skills. I used to think, “Well, there has to be more out there for our kids.” I heard their words, but couldn’t grasp the full meaning of what they meant. While I can’t yet see through the same lens as they do, as Wil gets older I’m grasping more of what they were telling me. I’m feeling it more than just hearing the words. Please don’t misunderstand, none of us would trade this life. We love our chromosome-enhanced life. What I’m getting at is it’s a new reality for us that we have few examples of. Our kids mature and the divide grows between the typical world and our Down syndrome world.

I’ve heard the response, “No one knows what the future holds.” I appreciate respect that answer. But there are situations we grasp even if we don’t have all the details, and situations we don’t grasp simply for the reason we have nothing to relate it to.

Just because we think we understand, doesn’t mean we do…until we can feel it for ourselves. Then it becomes real.106199062_10223431683721660_3233359678270749978_n.jpg

 

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. ❤️

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.

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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