Happy is as Happy Does

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

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

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

“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).