1% by 1%

Last night, there was a story on the news about a young man with Down syndrome training for a full ironman. Yes, a FULL! I fanned my hands in front of my eyes. Just freaking WOW!

His motto was 1%. Every day do 1% better than the previous day. That’s something we can all commit to. A very smart and dedicated man.It’s a feel good story for sure. And it’s a barrier breaker. It’s likely getting shared all over, as it should be. These stories are powerful not only for individuals with Down syndrome, but for all of us. Who knows who just needed that 1% nudge and decided to take it after this story.

I love these front stage stories. But as a parent of a child with Down syndrome, I also want to pull back the curtain. I want to talk to his parents. Beyond the typical questions that are asked. This is how they go: We were very concerned that my child had Ds. But what a blessing! Look what he/she can do now. These are success stories, and we can relate. I know I can.

But I want to go deeper. What is the day to day like? In many ways, our kids need some support. So in giving Wil independence, he’s not always aware of dangers. How did his parents give their son independence? How did that look over time? When did they push? When did they step back? Who put the Ironman idea in his head? Did he discover it? How was he made aware of it? Was it a fitness progression over time? That is the 1% I want. What were the 1%’s each day that added up to this place for your son?

I’m not asking because I want Wil to do an Ironman. If he wants to, more power to him. But my question is more 1%. I want to know the day to day for Wil to reach the highest level of independence he is capable of. I want to know the ideas to open him up to that. I want to know the parts they opened for their son to discover on his own. All the pieces that add up to the whole, whatever that whole may be.

Last night as Matt and I watched this show, Wil was out in the back field collecting sticks. He got cold, so came in grabbed a hat then dug through the glove bin. He picked out one glove and one mitten: one fit the right hand, one fit the left. No time to find a match, there were sticks to be collected. He flew out the back door, grabbed his wagon and pulled it up to the sticks he had piled. He hefted up one after another, stacked them across the top of the wagon (they were too long to fit in the wagon). Then he pulled his wagon down the hill to the fire pit, stopping a few times to retrieve a large stick that would slide off the pile.

I didn’t want to interrupt his busy work, but I also wanted to know where he was. So I went to our master bathroom window, that has a view of where the firepit is. I watched as Wil carefully unloaded each stick into the pit. Some weren’t quite right, so he put them back in the wagon. I yelled out “Good job!” from the window.

“Oh, hi mom! Look, we can have a fire!” Then he marched back up the hill with the remnant sticks and piled them all up on our back porch. I’m not sure of their intentions as they are still there today.

Wil walked in the house, nose pink and declared, “It is time for a 4-wheeler ride now, Mom.” I was nice and snug inside. It was a grey day and dusk. I really didn’t want to go on a 4-wheeler ride. I wanted to get under a blanket on the couch. But that wasn’t happening. I’m so thankful how active Wil is and I want to keep it that way. I don’t want him to get lulled by the couch. Activity for Wil is incredibly important for his health. He has low muscle tone and low thyroid, and his independent activity keeps him fit and energized. So I wasn’t going to put the stop sign on the 4-wheeler ride. Out we went. We zipped around the back field, then up and down the hill about 1,000 times in front of our house. Oh that fresh air! It woke me up, and I felt vibrant. Wil yelled out, “Giddyup Yeehaw!” every time we sped down the hill.

Wil picking up sticks is so much more than that. It’s 1% toward whatever goals he wants to achieve in life. But he needs my support. He needs the people behind the curtain. Every 1% adds up to the whole. It’s so much more than a feel good story; it’s about adding up the 1%’s. Next time you see an inspiring story like this, take a moment to look behind the curtain. To wonder what it took to get to that place. It’s more than an inspiring story, it’s about learning. It’s about growing 1% better every day. And when you do that for someone else, you do it for yourself too. It’s about us ALL being better.

Person First

Person-first language. That was one of the first terms I learned. Wil is not a Down syndrome boy. Wil is a boy with Down syndrome. 

I also learned where the word Down came from: Dr. John Langdon Down. Dr. Down wasn’t the first person to discover Down syndrome, but he was the first person to fully describe the characteristics of Down syndrome. “Down” is thus capitalized for Dr. Down’s name, while syndrome remains in lower case. I heard from many different sources that Dr. Down’s name was unfortunate and that our kids really have “Up” syndrome (be sure to only capitalize the “Up”). 

Terms also got Down-right (or should that really be Up-right?) clinical. Hypotonia, hypothyroidism and epicanthal fold to name a few of the most common first terms I heard repeatedly. Except for one genetics class in college, I’d never been presented with so many photos of chromosomes in my life; and not just any chromosome. The very specific 21st chromosome pictured with 3 copies rather than the typical pair. Thus the name, Trisomy 21, the most common form of Down syndrome. 

Looking back on this early learning curve full of facts and definitions, I have a visual of a news broadcaster (if you can picture a hybrid of Tom Brokaw and Ron Burgandy) sitting behind a desk. His face is very serious as he taps his important stack of papers on the desk in front of him. He looks straight into the camera, ready to deliver his very important speech. Over his left shoulder is a screen, and on it appears the cherubic face of an infant. 

 “Good evening, folks.” He says in a professional deep baritone voice. “What you are seeing now is a baby with Down syndrome.” He pauses for effect. “Not a Down syndrome baby. Be sure to use your person-first language only, folks.” “Note the baby’s epicanthal fold, giving the appearance of almond shaped eyes…”

The photo of the cherubic baby is replaced with 3 squiggly lines.  “What you are looking at now are chromosomes. Specifically 3 copies of the 21st chromosome…”

“And remember folks,” he says in closing as the screen changes to a stock photo of laughing toddler (who has Down syndrome) with his cheerful mother,” there is nothing Down about it!” Cut to commercial. 

It’s easy to poke fun now because I’ve lived this life. In the beginning, the diagnosis of Down syndrome scared the heck out of me. Mostly because I knew so little about it. An education in terms was important to me. But there is a vast difference between living a life and learning about that same life. Learning about a life relies on definitions to develop understanding. But when you live that life, everything you need to know is learned by first-hand experience, and most importantly, feeling the emotions that accompany those experiences. 

Today, those stock photos of the 3 copies of the 21st chromosomes are squiggly, little lines that I just want to hug. They are part of my son. And speaking of hugs, have you ever had a Wil hug? Thanks to hypotonia, he just melts right into you. Don’t get me started on those little folds above his eyes. Talk about melting. 

As for Wil’s diagnosis? The coining of Dr. Down’s name is unfortunate,  who wants to be defined as Down all the time? But who is Up all the time, either?  Wil is Wil. We are totally down with Wil’s syndrome (be sure to capitalize the W). 

I would love to see my hybrid newscaster take on the task of presenting our potty-training adventures. The word poop was a common word in my vocabulary as both a noun and a verb. One well-meaning family member convinced my parents that the only reason Wil wasn’t potty-trained was because I was too busy. As my parents would have Wil to themselves for a weekend, this family member mentioned it would be the perfect opportunity for my parents to potty-train Wil. I said have at it! That very first night, my mom called me saying she gave up. We both had a really, good laugh over that. My parents are totally down with Wil syndrome, too. 

Having low muscle tone (aka hypotonia) didn’t help the potty-training process move smoothly, so to speak. Discussions within our Down syndrome support group revolved around this subject on most occasions. We were each other’s best resource, as we had very little other resources to pull from. Typical potty-training books were soon flushed down the toilet in frustration as our kids pulled up their pull-ups and got on with another day, oblivious to our concerns we’d be buying pull-ups through their teen years.

Wil is now a teenager, and thankfully the pull-ups days are long behind us. Poop, however, has not vanished as a common word in this household. He’s a teenage boy after all. Potty talk is considered hilarious in both noun and verb form. As for me, I continue to flush typical how-to books down the toilet and find my friends within our Down syndrome support group to be my most helpful and greatest resource (with a few laughs along the way to get us through our challenges). 

When you know the person first, you wouldn’t live, learn, speak or see things any other way. 

STORIES OF WIL: PUBERTY PART 1 is now available on AMAZON!!

PowerPoint Presentation
It’s here!!! We are so excited to make this announcement! This work of love is live on Amazon in both paperback and ebook format.
The purpose of writing Stories of Wil: Puberty Part 1 is to connect with families through relatable stories and raise awareness.
If upon reading this work of love, you find a benefit to you in these stories, please share your thoughts with others, and I’d appreciate your time in leaving feedback in a review on Amazon.com.
I’ve priced Stories of Wil: Puberty Part 1 affordably in both paperback and ebook format during these changing times (and free on Kindle Unlimited!).
For your copy, please click here: Stories of Wil: Puberty Part 1
Thank you for your readership, your love and support of our loved ones with Down syndrome!
XO,
Christie

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. ❤️

Upgrading the Lens

I wonder sometimes, do we view individuals with special needs as angelic, more so than our typical selves, because we do not apply the same societal pressures to individuals with special needs as we do to ourselves?

We see individuals with special needs for who they are.
For the love that they share.
For the hugs that they give.
Every achievement we celebrate for the dedication put in. But the achievement is not attached to the value of their person. They are loved for the whole of who they are regardless.
I wonder what kind of world this would be if we viewed ourselves through the same lens?

And conversely, discrimination exists by those who view individuals with special needs as less than because they only see the world through achievement. They disregard the love, the dedication, the whole of the person for a top grade or an occupation. I wonder what kind of world this would be if this view were broadened, expanded to see the whole of a person.

I wish I could say I always looked through the lens with the broader view. I can not make that claim. Life experiences have allowed me to upgrade my choice. And now that I have upgraded, I realize I’ve had the choice all along. It wasn’t the upgrade that cost me. Rather it was the narrower view.

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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.

Overwhelmed: Discovering a New Landscape with Down Syndrome

We walked down the hallway of the church, where the meeting was being held. Matt held the baby carrier, swaying slightly with the gait of his walk. It was somewhat dim in the hallway, Matt and my footfalls echoing off the walls. It was evening and the congregation had long returned home from the morning’s service. Though this was the first time we had set foot inside this church, I imagined the vibration of the organ’s music under my feet, the choir in white robes—a bright satin sash of solid color draped diagonally across their chests. White candles being lit, the rise of the preacher behind the pulpit, singing along heartily with his choir–-his flock forgiving his tone deafness for his heart for his Lord.

The sound of voices ahead broke the reverie of the imaginary church service in my mind. The mind is a master of distraction. For that brief moment of choir-filled distraction, I was thankful. My mind had been a swirl of unanswered questions since our son was born just over a month ago. I felt I was living in some kind of surreal dream. Thoughts swirling like Picasso clouds above my head. A cloud is a cloud, and yet, different.

Matt and I followed the sound of voices and found ourselves in a very typical church classroom. Spacious, rectangular, utilitarian. An oblong table had been constructed with two or three long tables pushed next to each other on each side of the room, with one long table connecting the ends of both sides. The tables were lined with chairs. No one was sitting. Women stood around the outskirts of the table, and a few men (I was relieved to see for Matt). The women, and men, were clustered in small groups of four or five. But they didn’t stay in their groups. They would mingle and move around from group to group. There was a sense of ease about them—they all knew one another.

To the far right of the room was an open area. About ten children ran around laughing and playing. Tears started streaming down my face. I couldn’t even place emotions to what I was feeling, it was all jumbled up inside of me. If I had to scoop it all up in my arms and label it, I’d call it “overwhelm.” I was “overwhelmed.”

There were a few adults in this area too, chatting with one another, playing with the kids, or redirecting a child from taking off to a door. It all seemed so normal, but it wasn’t.

“Hi, have we met before?” A woman was standing in front of me.

“Oh! Um, I’m sorry, I just…um, we are the Taylors. I’m Christie. This is my husband, Matt, and um, this is our little guy, Wil. He’s just over a month old now. We have twin girls too. They are home with my mother-in-law right now.”

“Very nice to meet you, I’m so glad you came,” she said, and put her arm on my shoulder. “Let me introduce you to some parents.” When things don’t feel normal inside, the simplest normal responses are breathed in deep like the fresh air they are.

I don’t remember all of the people Matt and I met, but we met almost everyone in that room. The common theme, over and over was, “yes, this is a challenging journey, but a very joyful and gratifying one. Though you may not see it now, you will. I promise, I promise.”

I didn’t see as far into the journey as they did, but their promises were my beacon. Though I didn’t grasp the full meaning of their statements, I could now see beyond the blur surreal clouds I was living in, heavy with question marks.

Soon, the meeting began and we all sat down in one of the chairs that lined the oblong table. The majority of the meeting was about learning styles for our kids. Before Wil had even reached 2 months old, I discovered that day that our kids with Down syndrome are mainly visual learners and math tended to be the most challenging subject. I don’t remember many other details about the sit-down portion of that meeting.

However, I did take home one key element–questions are good, but you can also get too far ahead of yourself. I wanted to know everything, right now. I wanted those funky, surreal clouds to disappear and the answers to make themselves known. And they would, in time. In time I would learn about Wil’s math skills. In time I would learn about Wil’s visual learning. But right then, I realized that what I most needed was having my feelings validated. For someone to say, you know what, I was there too. For someone to say, yes, you have a beautiful baby, but it’s also ok to feel sad, to feel scared, to feel like you don’t know what is happening. For someone to say, we have tried to decipher the same Picasso clouds too, and we have walked through them, and we promise, and promise again, the sun is shining on the other side. It may be a Picasso sun, and you will appreciate this type of sun more for having known the Picasso clouds.

Time is hugely discomforting as you wait for answers. And that is exactly why time is also a healer. Some things must happen with time. With experience. With day-to-day learning. Living in the unknown is an unsettling place to be. I thought knowing the answers would heal my pain. But it was the time with my son, and experiences with my son, that opened my eyes to the beauty of our new landscape.

On the last Sunday of September each year, I walk into a big park. Some years there is sunshine. Some years there are clouds. And some years there is rain. But every year, you will find multiple volunteers assembling long rows of tables lined with chairs. A big truck will pull up and unpack banners, balloons, t-shirts, food trays and such. Another big truck will arrive with a stage and band equipment. Once the stage, instruments and speakers are set up, the music begins to play. There are many spare instruments laid out for anyone who would like to play with the band.It doesn’t take long before a huge group of kids and adults with and without Down syndrome are dancing and playing with the band. There are multiple families and friends clustered around the stage. They mingle and move around and talk with one another. There is a sense of ease about them—even if they don’t know one another, they all have a common bond that brings them together.

This is a surreal dream. One that I now can’t imagine not living in. Those funky Picasso clouds and sun I once wondered at, are our normal. The promises I held so tightly to those years ago did come true. Time, experience, and support truly are healers. If I had to scoop it all up in my arms and label it, I’d still call it “overwhelm.” Overwhelm of joy, gratitude, fortitude and community.

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A Breath of Fresh Air at the Special Olympics

When you go to a Special Olympics event, there are some participants who talk to themselves, there are some participants who decide they are done and sit right down on the spot, there are some participants who decide to break out in song, there are some participants who spin in circles, there are some participants who hold things for comfort, there are some participants that go around talking to everyone they see, and the list goes on.  And there is always a volunteer to support them.

Most of these participants live in a world not made for them. They are constantly learning to function in that world. This takes a lot of work on a daily basis for both them and their caregivers. The Special Olympics and other such events for our kids is a breath of fresh air. Our kids have the opportunity to learn, grow, showcase their talents, all while being exactly who they are. To an outsider looking in, this scene may look strange, but to us it’s downright refreshing. Everyone “gets it.” We get to take a step back, to not always be on guard of where our kids may run off to, when they may shut down, or how they may fall apart. Our kids can be themselves without judgement and without reservation in a world designed for them to do just that.

We  the Special Olympics!!
#SOMI

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Hula Hoop With Me: How friends with Down syndrome put a positive spin on our lives

Yesterday evening, when I left for work Wil’s comforter was still in the wash machine. I told him I’d put a different one on his bed. As I fanned it out over his bed, before it had even fully settled, Wil jumped up and landed spread eagle across the comforter on his bed. He closed his eyes, smiled and uttered an, “Ahhhhh.”

I’m not a scientist. I’m not a psychologist. But I do know one thing. Spending time with people with Down syndrome sure brings out those feel good feelings we are all looking for.

And it’s a lasting happiness. Each time I see that comforter fan in the air and Wil jump up upon it and live his simple joy out loud, I’m lifted a little higher. It may be simple, but it is no less powerful. I can do today in a better way. I truly believe a positive biochemical change happens in us spending time with people with Down syndrome. Our instinctual feel good hormones are released naturally, without the aid of substances.

I have a vision — a vision of a large gym room. Wil is there. Friends with Down syndrome are there. They are jumping rope. Twirling with hula hoops. Shooting baskets. Some basketballs “swooosh” through the basket while others bounce off the backboard. Wil is attempting with all his heart to keep the hula hoop around his hips. It continues to fall to the floor. He laughs, picks it up, and tries again. A small group of “typical” individuals who are struggling in life walk in. They are desperately seeking happiness. They may be overly competitive. Have social anxiety. Low level energy. One grabs a hula hoop. Another picks up a jump rope. And some others gather to shoot a baskets. The social anxiety kicks in. They can’t hula hoop. They haven’t jumped rope in years. The intensely competitive feel their juices flowing. I’ll hit every one of these and drown these suckers. Wil urges the woman next to him to try the hula hoop. His laughter as the hoop falls and he picks it up again is contagious. She tries. Hers falls. She picks it up again. She still feels self-conscious. Others are watching. But Wil encourages her. She tries. She finds the trying is more fun. She forgets others are watching for brief seconds at a time. This is the most fun she has had in years. 

Our competitive friend shoots and sinks every basket. Another friend with Down syndrome congratulates him. He starts to talk to him. Our competitive friend can’t quite understand. He nods his head like he does understand. Who has time for this? He’s got things to do. But does he? The two guys shoot more baskets together. They start to talk again. Our competitive friend really has to listen this time. He’s been asked a question. He has to talk a little slower. They get into conversation. They shoot more baskets. Though their success rate differs, they both find each other congratulating or encouraging another effort. But now it’s time to go. Our competitive friend doesn’t know what just happened, but somehow, he feels like he just took in a huge breath of fresh air. And he hasn’t done that for a long, long time.

They meet again in the gym the next day. Our friends with Down syndrome yell out the visitors names and run up for high-fives, fist-bumps and hugs like long-time friends though they have only met the day before. They pick up the hula-hoops, jump ropes and basketballs. They pick up right where they left off, but somehow feel years lighter than only a day before.

They come back again the next day. And the next. And the next. They start to make real friends. They get better at shooting baskets, jumping rope and hula hooping. Those that made their first full twirl before the hoop fell are congratulated just as enthusiastically as those who just hit their 20th. What is recognized is doing better than the day you did before. Each and every day, big enthusiastic greetings are the norm. The talking is slower, the listening needs to be more intense. While this may have first resulted in impatience in our visiting friend’s “outside” life, they begin to see how gratifying slowing down is. How taking time to listen is actually a “feel good” mechanism. Go figure.

Our visiting friends find themselves bringing some of these attributes to their life outside of the gym. They greet others more enthusiastically. Genuinely. They listen. Like really listen. They’ve slowed their roll some, but notice they actually have made stronger connections. Their accomplishments take on a different meaning. They are more fulfilled for the connections made. In that, they are able to honor their own achievements as well as others. 

I can be any of those people that walk in the gym. I can get overly competitive. I can get anxious about what others will think. Heck, even sharing this post I can hear you saying, “What kind of utopian world does she live in thinking this gym vision would have any impact?” 

But here’s the thing, I walk into that gym every single day. And thankfully I also come back the next day. And the next. And the next. I need the reminders the gym life has to offer. Because the outside world does everything it can to take me away from what is important. How amazing is it that I am greeted enthusiastically every single morning? This fact alone makes me want to greet others the same way. Slowing down is a toughy for me. But my goodness, how incredibly rewarding that is once you do it. To listen, to offer your best self, whatever that looks like for you. Not in comparison to another. And all the while, finding a way to have fun doing it.

Finding yourself in the present moment: When you can’t press time on a child with Down syndrome

I meditate. 10 minutes a day. With Headspace. I get to choose when and where I meditate. My chosen 10 minutes of living in the present. It is bliss. It is zen. It is being. It is da bomb. 

But being put in the present moment when it’s not my chosen 10 minutes? Is there a fast-forward button on this present moment thing?

Last night Matt and I both got home about 7pm. Wil had two sheets of homework. Just one sheet, depending on Wil’s mood, can take hours or minutes. Currently Wil is congested. So he’s tired. Hours, rather than minutes, was the likely scenario. We usually start homework about 4:30 so Wil can take multiple breaks, if needed. Knowing I’d be home later, I asked Katherine and Elizabeth to work on one of the sheets with him, giving him breaks, and I’d complete the rest with him when I got home. Katherine and Elizabeth are very good at doing homework with Wil, and he enjoys his big sisters’ help. But even they could only elicit 3 answers of the 25 questions from Wil. 

In the end, pulling out all the silliness, encouragement and creativity we could muster, 7 questions were answered of the 25. The other sheet remained completely blank. Wil went to bed and immediately fell asleep. I did the same. It was exhausting for all of us. 

You can’t press time on Wil. The minute he senses force, he responds with like force. Taking breaks is a necessity. A brief break can save hours. He requires encouragement. Silliness always wins. Creativity a must. Some days are a breeze, and other days, like last night, are stumpers. 

On school mornings, I wake Wil up knowing it will take him 10 minutes to get out of bed. He requires a hug first. Then another hug. And another. And another. Then tickles and lots of giggles. Then we decide on what is for breakfast. Eating breakfast is a hot topic. He loves to eat, and it’s usually leftovers from dinner or a sandwich. He’s not into cereal. After breakfast, brushing his teeth is another process. He is a sensory kid. This too requires patience, silliness and creativity. Some days, brushing teeth is left until after school because of the time it can take. 

All of these moments with Wil require me to be present. If I press time on him, then it’s like taking 2 leaps back. Though I can predict these times with a fair amount of accuracy, they are not my chosen times to be in the present. This can be admittedly frustrating. When time feels too short to be in the present moment. Can we just move this show along already? 

At this point in my life, I don’t believe that being in the present moment is filled with bliss. That is, if it’s not at a time of our choosing. When I really want to press time on Wil, but know I can not, I have to find my silliness. I have to find my creativity. I have to find another well of patience. Some days I do better than others. When I reach a point of losing my cool, I get more creative. I get sillier. And my well deepens even more. So while the present moment is not what I’d call bliss, I’m still deeply grateful for my growth in it. Because I can’t press time on Wil, the present moment presses on me to grow. Maybe that is the lesson of the present moment–growth and gratitude. At least that is the theory I’m going with right now. And I’ve got about a million morning hugs to back that theory up.