special needs parenting

Turn it Up, Down

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Wil and I left the store and walked through the parking lot to our car. Wil stopped just short of our car, and kicked his legs out in front of him in quick succession. He began humming a tune, then planted his legs and wiggled his hips. His hum broke way to song and he pumped his arms in the air. 

“Mom, dance with me!” He yelled.

“How could I not?” I replied and jumped in with him. 

Wil is rarely without a song. If you utter a word, he’s got a song for it. If I say, “I think it’s going to rain,” he’ll reply with,  “Rain is a good thang!” (A Luke Bryan favorite.) 

Wil walks around our house singing songs. It’s not uncommon for Wil to break out in song at the dinner table. He may have halts in his speech, but his singing words flow. Wil plays and lives by the beat of his own music every day. You don’t have to know music to know Wil –he brings you along for the ride. 

One day while walking the aisles at Target, Wil spied sample headphones sitting on a counter. He put them on and started jumping, twisting and waving his arms. The wire cord attaching the headphones to the counter were his only hinderance. He danced to a beat streamed into the headphones only he could hear, and yet it was quite amazing to watch the effect of his song reach every person passing by. There was not a person who didn’t visibly relax their shoulders, smile and walk taller after passing Wil’s space. You don’t have to hear his music to feel the beat.

Ironically, when I think back to the day I received Wil’s diagnosis, my memoires are devoid of song. There was no dancing, not even to a silent beat. Even Wil barely let out a whimper. 

I learned lots of words and terms in those early days, but none had a note of song. In fact, Wil’s diagnosis had a name that was quite melancholy. The name “Down” was attached to Wil’s syndrome, after Dr. Langdon Down. Though Dr. Langdon Down seemed to be a good man, whose intentions were to make a better life for people with Down syndrome, a name like “Down” is hardly joy invoking. But leave it to Wil to change that.

Wil may have been a quiet baby, but he could soon sing “You Are My Sunshine,” word-for-word (a song my dad always sang to him) before he was able to speak. He rocked to the beat months before he could walk.

As Wil “gets down” to his music every day, I looked up that very term in the dictionary: “to enjoy oneself by being uninhibited, especially with friends in a social setting.” 

I’d say that’s a down-right accurate description. 

To which Wil would likely sing in reply:  “I turn it up, down, up, down, up, down…”

In Wil’s Words

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Wil and I laid on our sectional couch just before bedtime. Our heads together, we made a right angle given that we are almost the same height from top to bottom. My boy is growing up. 

“Mom, we read ‘The Shoemaker.’” I smiled. It takes quiet moments like these for Wil to initiate a conversation. 

“The Shoemaker? Was that in Ms. Kennedy’s class?” (Ms. Kennedy is Wil’s new resource room teacher.)

“Yes, up on the screen.” 

“Did you read it with the whole class?”

“Yes. There were elves.”

“Elves? Were they helping make the shoes?”

“Yes. They are cute.” Wil tilted his head closer to mine and smiled up at me.

“You are cute too.”

“I know.”

 “Tell me how the elves made the shoes.”

At quiet times like these, when Wil’s words are flowing and forthcoming, I wonder how many stories Wil keeps locked inside when the world is moving too fast for him. Wil is quick to laugh with his friends and interjects when he has something to say, but he rarely expands on his thoughts unless the time is laid out openly in front of him. When conversations are moving fast, as they typically do during the day, Wil is prone to stutter. Wil knows exactly what he wants to say but his words don’t come out fast enough and he gets stuck. “Use your soft voice, Wil,” is a cue we learned from Mrs. Charney, one of Wil’s speech therapists. Using his “soft voice” gives Wil the feeling of time and space laid out in front of him for his words to flow into.

When Wil is not forthcoming about his day (he is a teenager, after all), the topic of lunch usually gets the conversation rolling. Lunch revolves around his two favorite subjects: food and friends. Wil easily offers, in great detail, the day’s menu and the friends he sat with at the lunch table: “Seeger, Lila, Ashely, Sarah, Lilly…” This group of friends is gold, and happen to be 100% female. One of Wil’s homework assignments asked, “What do you want to do when you are an adult?” He thought about it for a moment and answered, “Football player.” 

“Hmmm, that’s an interesting answer.” I said. “You don’t play football. Do you want to learn how?”

“No.” 

“I’m pretty sure you have to know how to play football to be a football player. What else would you like to do?” 

“Get married.” 

“I’m not surprised to hear that. I hope whoever you marry loves listening to your stories as much as I do, Wil.”

“You are silly, Mom.”

Typical Truths

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“He will always be happy.” “God only gives special children to special people.” “Kids with Down syndrome are angels on earth.” Or the dreaded, “I’m sorry.”

Words meant to heal. Words meant to help. Words meant to fill the gap of not knowing what else to say.I have experienced, however, these words don’t fit the truth. Wil is not always happy. I’m not any more special than anyone else. Wil may be an angel, though, because he has brought me to my knees in prayer on many an occasion.

So what are the words that heal? What are the words that help? What words effectively fill the gap when it seems there are no words to say?I didn’t know the answers to those questions myself after I received Wil’s diagnosis. I was shocked and confused. My typical hopes and dreams were instantly dashed. A large void stood before me. What do I fill that space with? I simply didn’t know.

In tears, I called a childhood friend, Kelly. As I blubbered on about my child having Down syndrome, she said, “Well, how much does he weigh?” I stopped my crying in shock. Such a typical question of a newborn. I realized I had not yet been asked any typical questions. I didn’t even know I wanted to be asked such a question until that moment. When everything felt a-typical, feeling typical was a healing balm.

Words such as “Congratulations!” “What a beautiful baby!” Or, like my friend, “How much does he weigh?” And the helpful yet typical lie, “You look amazing and you just gave birth!”

In those early days, as a mother, I was flooded with information on how different our life would be. I didn’t want to feel special, I wanted to feel “normal.” I already was feeling sorry for myself, so I didn’t want anyone sorry for me. Hearing such typical words was the healing balm I craved yet I didn’t know it until I heard it.

Every baby is a gift. Every baby is an angel. And every mom deserves to feel special after giving birth.

Champs of the Day

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Two weeks ago, I shared a story with you about our tubing adventure on Lake Lansing with friends Cheri, Randy and their son, CJ. Thanks to Cheri’s patience, Wil overcame his fears and very tentatively got on the tube with her. With much coaxing, Cheri convinced Wil to go for a very slow ride. Wil’s fear morphed into thrill that day, and he couldn’t wait to come back for another try.

Wil’s second attempt was vastly different from his first. Wil eagerly hopped on the tube with his friend CJ, who also has Down syndrome. CJ is very adept at water sports. He tubes, wakeboards, ZUPs – you name the water sport and he’s likely an expert. He’s also fun to watch as he has great enthusiasm and knows lots of tricks. CJ, thus experienced, easily got up on his hands and knees on the tube. Wil followed CJ’s lead and propped himself up on his hands and knees. We all cheered Wil on from the boat.Wil and CJ bounced over big waves and even went outside of the wake. Wil’s smile never faded. What a transformation from his first ride!

After the tubing fun, we were all hungry. We decided to make a trip to Culver’s for a bite to eat. Wil loves a cheeseburger so he was pumped up. CJ was also pumped up to eat a cheeseburger with his friend, Wil. Cheri and I exchanged stories how Wil and CJ can tend to swallow things whole, as it’s so much work to chew certain foods. (Many individuals with Down syndrome have low muscle tone, making chewing certain foods a challenge.) Cheeseburgers are one of those challenging foods for CJ. He typically removes the bun and cuts up the cheeseburger. This day, however, CJ was determined to eat a full cheeseburger complete with the bun like Wil.

CJ watched Wil (an experienced cheeseburger eater) devour his cheeseburger, then looked down at his own cheeseburger with doubt. Cheri reminded CJ he could do this and she helped him cut the cheeseburger, with the bun still on it, into quarters to make it easier to chew. CJ picked up a quarter and bit into it. He chewed it slowly and tentatively.“CJ, you are eating a cheeseburger!” Cheri cheered. CJ looked at his mom with a huge grin. It was an exciting moment and we all cheered CJ on. By the third quarter CJ was eating like a champ. In fact, Cheri had to remind him to slow down! He finished his fourth quarter and we all reveled in his accomplishment. Not a light in the room beamed brighter than CJ.With the power of friendship, that tube and cheeseburger never stood a chance. Cheers to the champs of the day: Wil and CJ!

~Photo credit: Cheri Vincent Riemer

~Thanks for sharing this story Manchester Mirror: http://themanchestermirror.com/2020/09/07/stories-of-wil-champs-of-the-day/

Person First

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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.