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.
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.
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.
Last night I made “healthy” chicken tenders (soaked in almond milk, whole wheat bread crumbs, etc). I took the tenders out of the oven, hollered to Matt, Elizabeth and Wil, who were outside, dinner was ready then took Katherine to Crossfit. I returned to Elizabeth telling me Wil ate almost 2 pounds of the tenders, as when she and Matt came inside, only 2 tenders were left.
Late this afternoon, when I returned home from work training, Elizabeth told me she caught Wil in the basement eating chicken tenders! Apparently last night, after eating a few tenders, he put all but 2 tenders (kindly leaving one each for Matt and Elizabeth) in Tupperware. He hid the Tupperware full of tenders in the basement fridge so he could have them for lunch today.
“The gate is closing in four minutes, ma’am.” An airline representative said to me as I sat on the floor with Wil.
“Yes, thank you. I just can’t get him up. I’m trying.”
Katherine was standing by our bags and Elizabeth and I tried to lift Wil up into a wheelchair to roll him onto the flight. When an 110 pound boy with low muscle tone doesn’t want to move, its like lifting an extremely heavy noodle. Once you do get him up, he seems to fold within your hands and slip out.
I saw him falling apart about thirty minutes ago. When it started in his mind I can’t tell you. I saw his shoulders start to slump, then he muttered to himself. That was not a good sign. When Wil gets like this he needs time to unwind. My guess was he was becoming overwhelmed by the prospect of going to Florida. It’s not that he didn’t want to go, it was the opposite. The anticipation of it all was overwhelming him. He’d see my parents, he’d swim in their pool, he’d go to the beach. He loves my parents dearly and the thought of swimming every day was a dream. Especially after being homebound for so long with the pandemic. But all of that anticipation was building to the perfect storm. Unfortunately I only had four minutes left to quell it.
When I saw the first signs of Wil starting to shut down I enlisted Elizabeth’s help, as she jokes around with him a lot and can typically turn his mood around. She already saw what I did. She knew something was happening with Wil and knew it wasn’t a good sign. Katherine was reading a book, and I explained what I saw happening. I asked if she wouldn’t mind standing by the bags if things didn’t go well. She agreed.
Elizabeth and I had tried to perk Wil up with jokes and talking about seeing Grandma Leigh and Grandpa. Through all this, the line of people getting on the plane shortened. I knew our time was running out. And with Wil, time is what we always need. He slumped down further. I knew if he sat on the ground we’d likely not get him up. I scanned the room and saw an empty wheelchair owned by the airline. Likely someone had used it to board first class and now no longer needed it. I quickly ran over to grab it and wheeled it next to Wil.
“Look Wil! Do you want to go for a ride?” He looked up then looked down again. Nothing I had in my arsenal was working. We’ve been down similar roads before. Again, time is what we needed and it was quickly running out. And then, he sat on the floor. I didn’t want to do this, but I could think of no other options.
“Elizabeth, we have to lift him up. Can you help me?” And so, the two of us lifted him and he adamantly refused. The passengers that were still in line began to stare. They knew nothing of the build up of this moment. All they saw was the force being used. I felt sad. I felt anger. Not at them, not at Wil, but at myself. How could I, the mother, be forcing my son against his will. What message am I sending to Wil? What message am I sending to his sisters? What message am I sending to the outside world? That force is the answer? But that was the problem, I didn’t know the answer. I simply didn’t know what to do at that point to get Wil on the plane. I knew he needed time to process. I knew he needed time to tell me what was upsetting him. I knew, with time, he would willingly stand up on his own and board the plane. The problem was that the plane would be long gone with the time he needed. And so, I resorted to lifting him into the wheelchair, which he would then slide out of back onto the ground.
At this point I was sweating. I was frustrated. I was on the verge of tears. I racked my brain for options. I thought of sending Elizabeth and Katherine on the flight without myself or Wil. They were almost 15 years old and they’d been on this flight many times. I’d find another flight for Wil and I to Florida. But when would that be? I also knew how incredibly upset Wil would be when the plane left without us. But I certainly was not going to penalize Katherine and Elizabeth by making them stay back, too.
As these thoughts swirled and Elizabeth and I continued our attempts to get Wil in the wheelchair, one of the women from the airlines walked over and bent down to Wil’s level on the floor. “Can you get in the chair –” she paused and looked at me.
“Wil,” I said, “his name is Wil.”
“Wil, can you get in the chair?” He looked up at her. She was a break in his pattern. He wasn’t fighting me and he wasn’t fighting his sister. This was a fresh, new face. I took a deep breath full of hope. Please, please, please I prayed.
“We are going to see his grandparents. He’s very excited for all the swimming he’ll be doing.” I said to the airline representative, so she’d have more personal information to persuade Wil.
“Wil, don’t you want to go swimming? And see your grandparents? Let’s get you in the chair so you can do that.”
When Wil stood, I felt as if 100 pounds was lifted off my shoulders. And in a way, it was. Wil sat in the chair and the airline representative wheeled him to the gate. I then took the handles, and as I did, I looked her in the eyes and said, “Thank you.” She looked back at me and nodded. I couldn’t tell if she understood what was happening or if she thought I was an awful person for forcing my child against his will. I have no control over her thoughts but I do have control over mine, and I was thankful beyond measure that Katherine, Elizabeth, Wil and myself were boarding that plane together.
That is one of the challenges of awareness. It’s rarely the act of what is seen that’s the full picture. When I saw what was happening with Wil it was thirty minutes prior, and likely whatever was happening in his mind started earlier than that. But what everyone saw was the five minute breakdown. What message was received in that time to contribute or take away from Down syndrome awareness? It’s rarely black and white. It’s this process that happens over time, and though I’ve been raising Wil for 13 years, every day I’m figuring out the grey areas.
Once on the plane, Wil was back to his silly, fun-loving self. We had crossed whatever barrier was in his mind. On that flight, I was already mentally preparing for the flight home. Going back over the signs of Wil breaking down. What I could do to prevent them. For the flight back home, my mom packed his favorite snacks. I downloaded favorite movies. And I didn’t need a single one, Wil breezed through security and onto the plane without a single halt. It was all gloriously uneventful.
But that flight on the way to Florida stays with me. It’s a puzzle to unfold. And I do know it needs to be unfolded with extra time. I’m better at reading Wil’s cues, but I need to find them earlier and earlier when I know time is not on our side. Even so, there will always be those times when he shuts down and I don’t have time. What to do then, I still need to figure out. Force is not the answer. Domineering someone is not the answer. Time is the answer. Anticipation is the answer. But what if you don’t have those things? What then? I don’t know yet, but after that flight, when I do have time, that experience reinforced that I need to take it.
The day after we arrived back home, I needed to make a Costco trip as our cupboards were bare. Katherine and Elizabeth love going to Costco. We had not been there since the pandemic, so the girls were extra excited with the prospect. Wil, not so much. Earlier that morning, Wil had gone with me to the school to return his sister’s Chromebooks and textbooks as school just ended for the summer. We saw his speech therapist and he enjoyed a conversation with her. Wil missed seeing all of his teachers in person with the pandemic, so this was a real treat. He was in great spirits so I was surprised that he immediately turned down the prospect of going to Costco.
“Wil, you love their pizza. Remember those huge slices of pizza?” His answer was still no.
When we returned home from the school, he went directly to his room. As both Katherine and Elizabeth were looking forward to the Costco trip, I wasn’t about to ask one of them to stay back with Wil. So, how to convince Wil to go? I knew, in time, I could figure out what the roadblock was. And unlike the plane incident, time was on my side.
“So, Wil, why don’t you want to go to Costco?”
“Humpf.” (His favorite answer when he doesn’t want to explain.)
“Wil, aren’t you hungry? It’s been awhile since you had breakfast.”
“Yeeeeeeees,” he said and looked at me. His sense of humor was there. A great sign!
“Sooooo,” I said mimicking his drawn out “yes.” “Let’s go to Costco.” And I did a little dance.
“Mom, you are silly.” He said, laughing.
“I know, so are you. Let’s go silly.” I tickled him.
Elizabeth heard the exchange and came into Wil’s room. “Suddenly I feel very tired. I’m going to take a nap.” She sprawled out on Wil’s bed. This is a regular joke between them.
“No,” Wil said and jumped on Elizabeth. “This is not Lizbeth’s bed!” Elizabeth fake snored. “Lizbeth get up.” Elizabeth continued to fake snore and Wil bounced on her. “I’ll go on Lizbeth’s bed.” Wil got up and ran to her bed.
“Hey, not my bed,” Elizabeth jumped up and chased him.
“Yes, your bed,” Wil said laughing and running to Elizabeth’s room. Elizabeth bear hugged him before he reached her room and turned him around. They both fell down laughing on the ground.
“Ok Wil, let’s go to Costco.” Elizabeth said.
“No!” Wil ran back to his room. I thanked Elizabeth for trying, then went back to Wil’s room. I sat down next to him. He picked up his Ipad and started playing a game. I sat with him awhile. After some time and discussion over his game, I tried again.
“Wil, what’s the problem? You love Costco pizza. And it will be a fun trip.”
He was quiet so I waited him out. Then I asked him again.
“Too long of a trip, Mom.” He replied.
I remained calm and nodded my head, but inside I was doing cartwheels. He didn’t simply respond yes or no. He told me why! He told me what he was thinking and why he didn’t want to go! And all it took was giving him the time he needed. Time is both a challenging and simple answer to unravel all that holds Wil back.
Simple: give Wil time and the answers come. Challenge: I don’t always have the time he needs. And, it takes a lot of patience. Time and time again. But when the answers come, they are always worth the time. The milestone of Wil telling me why filled my heart to overflowing. I would wait to the ends of the earth to hear words like that. Every parent out there who waits for milestones to happen, never knowing when or how, and then when the milestone emerges, unplanned, unscheduled, of our child’s own will, knows this feeling of joy I speak of.
“So that’s why you don’t want to go? It will take too long?”
“Yes,” he said. And just like on the plane, where many see the one snapshot in time, and not the build-up, so was this conversation. So simple on the surface, and yet, for me to have this conversation over his “why” was a build-up in time. It was a beautiful moment. A breakthrough. An answer I had coveted and now could enjoy sharing with my son.
“Ok, how about this?” I asked. “How about we make it a short trip? Then a big slice of pizza at the end of the short trip.”
“Ok,” he said and stood up and slipped his Crocs on. No fight, no domineering. His feelings were expressed, heard and validated. Oh, sweet time how I could hug you!
I was thankful, too, that Katherine and Elizabeth were witness to the process of the Costco trip. That the message being sent was the gift of time. I told them I wasn’t proud of the incident on the plane. That I still don’t know what the right answer was. But I do know, when we have time, Wil needs that time extended to him. To unwind, to unfold, to process. How would we feel if people were always running over us with their agenda? That’s likely how he feels all the time. It not about giving him what he wants all the time. It’s about giving him the time to tell us what we wants and how he feels so we can work with that.
When we arrived at Costco, Wil wouldn’t get out of the car. I reminded him that he agreed to a short trip. Katherine and Elizabeth joked with him. Katherine and Elizabeth tickled him. Katherine and Elizabeth eventually got him out of the car. The patience these girls have with most things we do is their norm. We rarely just get in the car and go somewhere. There is always the element of time required. I expressed to the girls that I know it can be tiring to always be extending extra time to Wil, and that they are wonderful at making that extra time fun. But when we make the challenges fun, the joy on the other end is bigger. Just like the big, ol’ slice of pizza at the end of the Costco trip. Wil held his up like a king.
Elizabeth has said, “There are good days, bad days, and Wil days.” Her sentiment sums this up beautifully. Acceptance of the WHOLE. Every day is new, and I learn from each one of them. When I know better, I do better. And as Wil proved, uncovering the “why” behind it all is the joy of a lifetime, no matter how much time it takes.
I’m thankful to know ALL of the days, and my deep breath of hope is, you are too.
“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.”
“Sorry, Wil. Can you say it out loud instead of whispering it?”
He leaned in to whisper again, “Olllazanya.”
“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.”