happiness

Twist, turn, kick. Sputter. Smile.

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His swim instructor was showing him how to roll over from his stomach to his back in the water. He’d start, face down, floating, then twist himself around. As he made the twist, he’d flail slightly, body twisting hard, with a little kicking to get himself all the way around.

He’d pop his head to the surface, his clear-lensed wide-eyed goggles—he affectionately calls “Frog power” when he puts them on—showing wide eyes underneath. His breath sputtering, spitting out water. Then catching his breath, laying on his back, realizing he succeeded, a huge smile spread across his face.

Again, he’d twist, kick, turn his body around. Low muscle tone making the task challenging, his observing mom thankful for the important core strengthening that was happening. Again he surfaced, sputtering, eyes wide, spitting out water, catching his breath. Then the smile. Big. Proud.

Again, he’d twist, turn, kick. Sputter. Smile.

Again, again, again.

Each time, the twist would come a little quicker. The sputtering less. Soon, the smile was already there, shining underwater, revealed as he completed the turn and lay on his back. Floating.

And his observing mom found herself smiling too, thinking isn’t life just like that?

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Slippery Rocks Ahead!

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“Slippery rocks ahead!” It was a dark, pre-dawn August morning in Michigan’s Upper Peninsula. Headlamp lights bounced off the rocky trail. It had rained the night before, so the trail was slick. The jutting rocks and roots mixed with the elevation proved challenging without throwing in the darkness and slickness. Even though I had read about this trail and watched a video of the race, I was only partially prepared. Traversing the trail with my own feet was the only way to truly be in the know.

I have made no hidden remarks about puberty with Wil mixed with Down syndrome. I could have guessed what was ahead, I had read enough and prepared myself enough, but there are certain things you simply need to experience to fully be in the know. I talked to Wil’s teacher consultant for ideas in working with his new behaviors associated with puberty–she has worked with multiple children with multiple diagnoses. I noticed the first thing she did was ask questions. Lots and lots of questions. I respected that greatly. She wanted to know all about Wil and his behaviors. She didn’t make assumptions based on him having Down syndrome. Though she is someone “in the know”, it was important for her to know and understand Wil.

The other morning, Wil was being extremely willful. It took him a full 30 minutes to get out of bed and ready for school. The pattern continued through the day into the evening. He didn’t want to go to Katherine’s CrossFit class that night, but Elizabeth was at basketball, and Matt was out of town, so going to CrossFit was his only choice as he is not able to stay home alone at this point. Katherine and I finally convinced him to get in the car, with the promise of a stop at Bigby Coffee for a cup of hot chocolate with sprinkles. I took a deep breath when we got in the car, played some music, and all seemed to be going well. After dropping Katherine off at Crossfit, Wil and I headed to Bigby Coffee. I ordered his hot chocolate and he drank most of it. We shared a conversation, with a few pauses and prompting. When it was time to pick Katherine back up from CrossFit, he refused to leave. Again, with lots of prompting, I finally got him up and into the car. When we arrived home, he had some time to watch tv and then go to bed. Again, he refused. Thankfully, we didn’t have anywhere to go so I walked him to his bedroom and told him he could stay in there until he was ready to put on his pajamas. This is usually a successful tactic as it gives him time to unwind and feel back in control of his situation. It can take anywhere from 15 minutes to an hour. Well, it took an hour. By the time I got Wil into bed, I wanted to go to bed too I was so exhausted from the constant negotiations and patience required the entire day. Though I knew I would have fallen asleep the moment my head hit the pillow, I felt the need to unwind and feel back in control of my situation, too. So I sat down and read a book, as exhausted as I was, until I felt calmed down, then I went to bed. And indeed, I fell asleep the second my head hit the pillow.

When Matt returned to town, I told him about this experience. How the entire day, Wil had been willful. How I had tried to get him to communicate, but he was being obstinate with anything I did.

“Hmm, sounds like a teenager to me,” Matt said.

That next week, the kids had Friday and Monday off for President’s Day weekend. On Thursday morning, Wil popped out of bed singing, “Friday, Friday, Friday!”

“Actually Wil, it’s Thursday.” I replied.

“No, it’s Friday, Friday, Friday!” He continued singing.

“Huh, you know, you are right. In school days, this is your Friday. Hooray Friday, Friday, Friday!”

On the flip side, Tuesday was not so celebratory. After having Friday and Monday off, Wil was well out of his routine. He refused to get on the bus after school on Tuesday and even took off outside for a brief period. His teacher was on it, rallied him back in, and when I entered the school office to pick him up he was fairly cheerful, no doubt for his bout with fresh air and freedom.

“Wil, you were all excited to ride the bus home when I dropped you off for school this morning. What happened?”

“Mondays are hard, Mom,” he said. I almost said it was Tuesday, then caught myself. In school days, it was his Monday. And yes, I agree, Mondays can be hard.

Refusing the bus ride home on Mondays is more the rule than the exception. If I were to graph his week, it would be an upward slope. As the week goes on, he gets back into the groove of his routine, and though no day is smooth sailing, his days grow progressively smoother and more productive. Wil earns stars for doing work in each of his classes. Wil earned a mere 4 stars that Tuesday, but doubled that count by Thursday. On Friday he promised to uphold that double count of stars. And that he did. Friday, Friday, Friday!

When Wil was a baby, I read multiple books about Down syndrome. First books about babies with Down syndrome (which is an actual title of one of the books) up to books about teenagers and young adults with Down syndrome. I wanted to put myself in the know. I needed to put myself in the know. There were much too many unknowns in the distant future when I learned of Wil’s diagnosis. Reading books helped put me in the know–or so I thought. I really was only partially in the know. Because you don’t know what you don’t know until you do know. Now that I know, I know there is much more knowing to come.

When I trained for the 50-mile trail race in Michigan’s Upper Peninsula, I approached it quite similarly. I read as much as I could about ultramarathons. The terrain I was used to in the lower Peninsula was much different from what I would experience in the race. Where the race’s trail was rocky with steep elevation, the roads I was used to were sandy with rolling hills. I would also start the race in the dark. I wouldn’t be able to see what was ahead of me except for what was illuminated in the small, thin beam of my headlamp. I wanted to be in the know. But until I hit that trail with my own two feet, I was only partially in the know.

At the beginning of the race, we runners were all backed up along the single track trail in the dark pre-dawn with the calls of “Watch out, slippery rock ahead!” We made our way gingery, step-by-step-by-step, careful not to twist an ankle this early in the race. As the dawn spread, and the view of the trail opened up in front of us, we proceeded more confidently, and found the paces we had trained for. Even so, there were many surprises along the way. Along the shore of Lake Superior, I made good time. The ground was a soft bed of pine needles. I enjoyed the view, the soft footing and the flatter terrain under my feet. When I hit Hogback Mountain, I stopped and looked up at the tall climb. I had read about this part of the race, but now I was about to experience it. I was on hands and knees, climbing, crawling, scaling looking for the little orange flags stuck in a crevice, that led the way, so I wouldn’t make a wrong turn. I climbed next to others, and when we’d spy a flag we’d call out, “There’s the flag, this way!” And we’d creep and crawl until we found flatter footing and took off again.

As much as I value preparation, no one could have told me how it felt to know the soft bed of pine needles under my feet. Then, to come to an abrupt halt of a hard rock hands and knees climb, progressing at a snail’s pace, eyes peeled for a sign I was heading in the right direction–all the while knowing, if I made a wrong turn, I wouldn’t make the time cut-off, and will get pulled from the race I trained so hard for. As such, you can’t read about a child with Down syndrome’s behaviors and expect to know what exactly they are communicating without being able to ask questions specific to that child. You can’t know the free flow of milestones being hit, closely to on time, and then bam, a mountain to scale–seeking out any flash of orange to guide you on your way. You can’t know the patience it can take, and also to fully understand when that very patience breaks, until you’ve been through it yourself—all the while savoring your journey, no matter how confusing, exhausting, or exhilarating it may be. As prepared as we may believe we are, we don’t really know until we’ve traversed the path with our own two feet.

I have learned a lot from Wil, but Wil is not a lesson to be learned. Wil is not an object of advocacy. Wil is a 13-year-old boy. Wil has 47 chromosomes and Wil is also a teenager. Wil has tough Mondays and cheers on his Fridays, Fridays, Fridays! Wil has 4 star days and 8 star days. Wil’s week goes in an upward curve quite predictably, but what happens along that curve is anyone’s guess. Sometimes it’s a protest on the basement stairs and sometimes its as close to smooth sailing as he gets. Sometimes I can navigate the journey on my own, and sometimes it takes a team. What I know about Wil is what I know now. Preparation is key, and so is the reality that tomorrow is anyone’s guess.

The only advice I can offer up to this point is there are Slippery Rocks Ahead! I can’t tell you where until I cross them myself. But when you get there, who knows, the climate may have changed and you may sail right through. Keep your head up, always work toward an upward curve, and ask lots of questions. The little flash of orange is always there to lead the way, though you may need an entire team crawling, scaling and putting one hand and foot in front of the other to find it. Mondays are hard, even if is a Tuesday, and celebrate every Friday, Friday, Friday! even if it is a Thursday. Be weary of those who claim to know the answers–only those who ask questions truly seek the answer. Labels define us, and preparation prepares us, so we feel that we may know. And yet, each day is it’s own, and each of us is our own–so we only partially know. You don’t know what you don’t know until you do know. Once you do know, you can betcha it will change.

Happy is as Happy Does

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I wasn’t feeling very well yesterday. Wil had just gotten over the flu, and I believe a lesser degree of his illness hit my system yesterday. Other than going to work in the morning, and taking Katherine and Elizabeth on a few errands, I laid low and got as much sleep as I could. I decided to sleep in this morning, and Matt had long left before I woke up.

I could smell the coffee in the kitchen when I woke up. It smelled good, so that was a good sign. I could hardly drink any yesterday with the nausea.

It was still dark in our house, as I padded from my bedroom toward the kitchen. Katherine, Elizabeth and Wil were still sleeping. I walked by Woody, curled up in his bed on the living room floor. He didn’t lift his head, but his tail, extending the outskirts of his round bed, gently and rhythmically tapped the hardwood floor. I bent down and gave him a pet.

I made my way into the kitchen, and poured myself a cup of coffee, then turned the desk light on just above the Lazy boy chair. I nestled in the chair with a book. My New Year’s resolution has been to stay off of any media first thing in the morning and read something that will improve my life. Twenty days in, just one more day to cement the habit.

Soon I heard Wil rustling in his bed. He got up and must have seen the desk light in the living room. He walked toward the doorway in his room, and leaned to peer out of it. As soon as he saw me, he quickly stood back upright and shut his door. Privacy has been a big deal lately.

A few minutes later, he emerged fully dressed in a button-up collared shirt and pants.

“Going somewhere special today, Wil?” I asked.

“Hi, Mom.”

“Hi, Buddy.”

He walked over and climbed up in the chair with me.

“You are squishing me, Mom.”

“Hey, I was here first, you stinker. I think it’s you that is squishing me.”

“Ohhh, Mom. You are being silly.”

Hearing his string of words must be how an elementary music teacher feels when the choir comes together in harmony. Hours of practice, working for the notes to come together–to click. Wil used to say “you be silly Mom.” Now, the combination of “You are being silly” strung together in perfect harmony to this mother’s ears.

“Breakfast now, Mom.”

“Ok, let’s have your pill first.”

Wil takes a thyroid pill every morning in a spoonful of peanut butter. 

He has since he was six months old. He first took his pill in applesauce. Then at some point, he decided peanut butter was a better choice.

“Do you want to get out the peanut butter this morning, or me?” I asked him. Along with privacy, his independence was flourishing.

“I get the peanut butter.”

After I scooped up peanut butter on his spoon, and sunk the pill into it, I held it up to his mouth. His independence may be growing, but with his pill he still loves the game of “open the tunnel.”

He took the spoon, and I said open the tunnel, and he swallowed down his pill.

“Mom, guess what. I’m a choo-choo train!” And he started taking straight-legged, tiny steps around the kitchen island. His arms were bent at 90 degrees, making short, choppy swings.

“Mom, you do it with me!” I fell in straight-legged, tiny steps behind Wil and we choo-chooed around the kitchen island.

Once we made it full circle he laughed then said, “Ok, done now.”

He helped me make his breakfast sandwiches. Then he grabbed his plate and walked downstairs to watch Sofia the First on Netflix. I don’t know why, but he only watches that show while he eats. When he’s done eating, he’s done watching and moves on to something else to play with. I went back to reading in the Lazy Boy.

When Wil came upstairs after eating his breakfast, the sun was rising and warm on the window in the living room. He leaned his back up against the glass and said, “Ahhhh warm. It’s a beautiful day, Mom.”

“Yes, it is. Elizabeth has basketball practice this morning, but when she gets back, let’s go outside.”

“Ok, Mom.”

Wil walked off to his room, and put his favorite Luke Bryan CD in his CD player. He started singing at the top of his lungs. I started singing with him.

“No, Mom! Just me this time!” (I again heard the harmony with the addition of “this time” when he used to say, “Just me!” )

“Oh, geez, fine whatever. You never let me have any fun.”

“Oh, Mom, you are being silly.”

I gave him a hug and went back to my book. He restarted the song because clearly I messed up his groove. But I still belted out the choir with him from my chair in the living room because I just couldn’t help myself.

Yesterday, I did not feel well, and you never appreciate feeling good more than when you don’t. I was also living up to my resolution, and well on my way to forming a habit. My dog greeted me with the whap of his tail to start the day, and my son and I had already choo-chooed around the kitchen. When Katherine and Elizabeth woke up, I would surely annoy them with my great enthusiasm for the day (it’s so fun to annoy teenagers).

I don’t believe happiness is this big, elusive thing that we wait for to come to us. I don’t believe happiness is merely positive thinking. Happiness is positively doing. Happiness is positively seeking. Happiness is found and taken in lots of small doses that add up. Happiness is choo-chooing around the island rather than grumbling over a daily pill. Happiness is taking note of the sun through the window, leaning into its warmth and soaking it in. Happiness is hearing a harmony in a string of words. Happiness is singing at the top of your lungs because your son’s joy is downright contagious. Happiness doesn’t find us, we find it – in what we do, see, say, sing, and feel.

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Life with Down Syndrome: Never a Dull Moment

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Last night, Katherine had Crossfit at 5:30pm, and during her hour there, Elizabeth, Wil and I grocery shopped. I wasn’t feeling that well (some winter bug), so wanted to make it a quick visit. We picked up the necessary items for dinner, then got into the grocery line. The line was quite long. As we waited in the grocery line, Wil spied a Sprite in the cooler.

“Look, Mom, Sprite!”

“Yes, Wil, you love Sprite.”

He started to walk toward the cooler. I put my hand on his shoulder to stop him.

“Not tonight, buddy. Remember, Sprite is your reward for riding the bus. If you want a water, I’ll buy you one. Would you like a water?”

“No, Sprite.” <of course>

“Wil, if you’d like a drink, water is your choice. We are saving Sprite as your reward for riding the bus after school.”

“Yes, mom, I ride the bus.” He said this very seriously. We’ve had instances where Wil refuses to ride the bus. It’s typically when he is having a tough day for any number of reasons. It’s a way for him to have control of the situation. But his teachers and I want to develop this independent habit of getting on the bus and riding it home every day. When he does ride the bus, he feels great pride in his independence. Though I’m not a fan of soft drinks, right now I’m going with the “whatever works” policy. And what works is his knowledge of a Sprite waiting for him in the fridge when he gets off the bus.

“Yes, you do ride the bus, Wil, and I’m very proud of you for doing that. Sprite is for after the bus. Tonight, your choice is water.”

He pondered this for a moment. Right now I could tell he was on edge. In these situations it was very possible that he would decide to dig his heels in about the Sprite. Which means he would go for the cooler against my protest. If I held him back he would sit on the floor on the spot and refuse to move. If I tried to move him he would kick or push me away. He’s getting too big to pick up, but if I did that, he’d get extremely upset and cry. It’s a very sad cry. A sobbing, body shaking kind of cry. It’s more than not getting what he wants. It’s about feeling out of control of his situation.

I leaned into Elizabeth and said quietly, “If this starts to blow up, I’ll give you my keys to walk Wil to the car.” She nodded knowingly.

“Wil, how about we take a walk and see what kinds of water they have? Elizabeth, would you mind waiting in line while Wil and I pick out a water?”

“Sure,” she said.

Wi agreed, so we walked across the numbered aisles and their accompanying coolers until we found one with bottles of water. He chose the bottle of water that appealed to him and we walked back and met up with Elizabeth in line. It was all gloriously uneventful.

If Wil refused and it turned into a full blown plop-on-the-floor-on-the-spot-and-not-move situation, our best choice is to wait it out. The last time we went to the grocery store, I gave him a choice of whether he wanted to go or not. It was the weekend, so Matt was home. Wil said he wanted to go. However, when we arrived, he refused to get out of the car. Elizabeth offered to wait with him in the car while Katherine and I went in to shop. I don’t always know the reasoning behind his refusal. Sometimes he’s simply tired. Sometimes there is something about the situation that overwhelms him. Sometimes it’s a matter of exerting his independence. A friend gave me a technique where Wil and I would count back from 10 together and then make a new choice. That worked at one point, but does not work now. Sometimes I can reason with him. Sometimes I can’t. We live a life of “sometimes” and “whatever works” with Wil. Yet, even though it sounds contradictory, consistency is a must when responding to Wil. I can’t say yes to a Sprite one time for Wil, and then not another. That’s extremely confusing for him. So though I live in a “sometimes” and “whatever works” with Wil, I must reply in consistency the best I know how.

It’s important to give him the time to make a choice– whether he makes that choice by sitting on the floor, staying in the car, or walking to the coolers in the grocery store. Wil requires extra time to process what his next step will be, and every single one of us has the need to feel we have choices. Rush him and you are asking to set yourself back even further.

Last night, I found his decision to walk with me to the various coolers looking for water to be a sign of maturity. He was thinking beyond immediate gratification. He reasoned through his choices and valued the meaning of a reward in the future.

Milestones with Wil are rarely smooth to emerge. They take a lot of patience, thought and trial and error. So when they arrive like last night, they are never overlooked or taken for granted.

I was recently told by someone that they enjoy my zest for life. Situations like last night are exactly the reason. I was standing in line at a grocery store when all this happened, for goodness sakes. How mundane can you get? Yet, in this grocery line, a piece of magic happened. A milestone emerged. Life can never be mundane for me, thanks for the eye-opening life with Wil.

I know Elizabeth and Katherine see this too. I have no doubt it’s hard for either of them to have the patience they do with their brother. This level of patience with his “sometimes” behavior applies to everywhere we go. But it’s also their norm. It’s just what they do. Elizabeth has said to me on a number of occasions, “I just don’t understand why people can’t accept people just as they are.” Because that’s what she does, every single day.

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Shades of a Smile

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There is something about people with Down syndrome that make strangers smile.

There are the warm, friendly smiles. These are those who have an acquaintance with Ds or have a positive image of people with Ds.

Then there are the he’s-so-darn-adorable smiles—just because he is and it makes you smile.

There are smiles of sympathy (those are where they look at Wil with concern, then the smile appears when they look up at me and there’s a sadness in their eyes).

Then, my absolute favorite, is the knowing smile. They look at Wil a little longer, and this far off smile appears on their face. You can feel the connection. Then they look up at me like we know each other—their smile says “I know you even though we haven’t met yet.” Sometimes they will share with me about the person they love with Ds. Sometimes they won’t. Either way I know they love somebody with Down syndrome. It’s a beautiful connection, if only through a smile.

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Emphasis on Happiness

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“Ok, Wil, here is your sandwich.”
“Thanks, Mom.”
“Uh, oh, there is a bite missing! How did that happen?”
“Awww, Mom, it was you.”
“Me? Huh, no way!”
“It was definitely you!”

“Definitely” adverb. Without doubt (used for emphasis).

Definitely is not a word essential to getting a message across. When kids start speaking, they give you the one or two essential words. “No!” “Hungry!” Soon, they start adding 2-3 essentials together. “Pick me up!” “You go!” “Wake up now!” And then they start peppering in the extras. No big news here, but it’s still darn exciting when those first words come, and then the second words, and soon there are short burst of sentences. By the time our kids are adding in the extras, we are on to bigger things.

Unless your child takes longer than others to put those essentials together. Eliciting one essential word may take multiple techniques to draw out. But here’s the bonus: With every single step toward a new word your perspective starts to change. You are so honed in on what is happening, the essential words become the extras. Words like definitely aren’t even on the radar. If you can just get one word, your whole world will turn upside down. And then 2 words, did your heart just burst in a million pieces for 2 words? Well, yes it did! You begin to notice every little change in sound, a rise or dip in tone, the process in formation of each blossoming word. And with all of that said, some words just bust out of your child’s mouth as if he’s been saying that word effortlessly for years. They will stare at you in awe as you jump up and down with joy for what they have no idea!

Wil has been speaking in sentences for quite some time now. We’ve moved on to working on initiating conversations: “Do you want to play Uno?” (be weary of accepting this invitation, the kid throws down Wild +4 cards with no remorse). Even so, I still feel a deep inner joy each time he spouts off a multi-word sentence. He’s started peppering his sentences with adverbs and adjectives now. They are quite impromptu. While most of his sentences contain the essentials, he’ll throw a little impromptu surprise party on an otherwise typical day saying that it was “definitely” me who took a bite from his sandwich. Then he walks off with his sandwich while I’m doing cartwheels across the kitchen floor.

“Down syndrome.” noun. Essential for happiness (emphasis on perspective change).