You know that “brillance” enhancement on your iPhone photos? How your picture is the same, but a little brighter? That’s how it is raising a child with Ds. There is a lot that is the same. So much that is the same. Then there are the experiences that take longer to emerge; I like to call it active patience. You try and wait, you try and wait, you try another tactic and wait. You continue on with active patience. Then it happens. It all comes together. Even though you’ve been trying and waiting, it feels like this big, magical surprise gift. That’s what makes it the same, but a little brighter.
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.
Wil’s friend, Lila, reads the foreward she wrote for Stories of Wil: Puberty Part 1. Wil is shy at first, but gives Lila some love at the end 😊
To read Stories of Wil: click Here
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)
The previous weekend, a storm blew through town and we lost our power. When Wil woke up, as per usual, he wanted his hot sandwich. I explained to him that we lost power so it would have to be a cold sandwich. Then he realized he couldn’t watch his favorite television show. He was becoming upset as he realized all the things that power provided to us that he wouldn’t be able to use. Wil is very much an outdoor-loving kid, so I suggested we go for a walk in town after breakfast. (With the pandemic, we’d been on multiple walks down our country roads. I knew the suggestion of walking in town would be more enticing to him as it would provide fresh scenery.)
I put the wagon in the back of the car, then Elizabeth, Wil and I (Katherine was spending the night at my parent’s house) drove into town while Matt stayed at home getting the generator running. Wil is an active kid, but with low muscle tone he gets tired easily. The wagon is useful in that he can take breaks and we can all walk together for longer distances. However, at 112 pounds, he’s not so easy to pull around anymore!
When we arrived in town, I bought Wil a Gatorade at the gas station as a “special treat.” We unloaded the wagon and walked behind the gas station to the gravel trail that runs along the River Raisin. It was a beautiful, bright morning. Multiple chipmunks scuttled in and out of the greenery along the trail, and though humidity hung in the air, the bugs were minimal.
At one point on the trail, when Wil was walking, we left the wagon behind as its noisy and bumpy on the gravel. On our return, the wagon in sight, Wil decided he was too tired to make it to the wagon. If he sat down, we knew it would be hard to get him back up again. Elizabeth ran over to Wil and whispered in his ear. “Wil, tell mom her hair is purple!” He ran over to me and yelled out, “Mom, your hair is purple!”
“Purple hair?” I patted my head. “How did that happen? Wil, come here.” I whispered in his ear, “Guess what? Elizabeth has orange toes.” He laughed and ran over to Elizabeth and yelled out, “Elizabeth, you have orange toes!”
We continued down the trail this way, with Wil running back and forth between Elizabeth and myself, sharing our colorful secrets about our arms, legs, noses, ears, toes and fingers. When we reached the wagon, Wil wanted to continue the game, so he walked on as I pulled the empty wagon. Elizabeth and I had to get creative with our colors – at one point I had chartreuse arms and she had a magenta nose.
Wil did hop in the wagon for the last climb up to the car. As I pulled the wagon up the hill, Wil occasionally called out the colors of our chameleon-like selves in-between sips of Gatorade. We made a final stop at Acorn Market for fresh blueberries and raspberries.
The power outage at home made way for a colorful morning out on the town.
STORIES OF WIL: Puberty Part 1 is coming soon! A “proof copy” has been ordered! 💙If the proof looks good, this work of love will be available on Amazon.com in just over a week!!!
Our dear friend, Aaron Garner, came to our home to film this book trailer. He’s a true talent and we all had a wonderful time.
We’d love your thoughts on the trailer!
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.