Living with Tourette’s

In many ways Cy Young Walters is your typical teenager.

The Watonga 17-yearold likes pizza, video games and funny Adam Sandler movies like “Hubie Halloween.”

He wakes in the middle of the night for midnight snacks. (Yes, his parents hear him sneaking around, much to Cy’s chagrin.)

He likes to hear the story about how his parents met.

For the record, they met in prison (while both working there, of course.)

“What will people think about THAT?” Cy emphasized.

Like many teens in small-town America, sports play a big part in his life.

He tried baseball and wrestling but didn’t find those to his liking.

“I started running,” Cy said. “We found something that I was good at.”

He is really good at running. So good, in fact, that he was an All-State finisher in the Class 2A State Cross Country Championships, and he signed a letter of intent to run cross country at Northwestern Oklahoma State University next year.

Yes, in many ways Cy Young Walters is your typical teenager.

Except, he’s not.

The diagnosis

The signs were there.

The tics, for one.

“He had tics for a couple years. It started out with him blinking his eyes,” Cy’s father, Scott Walters, said. “We’d be there watching TV and he would just blink his eyes a lot. We just thought it was kind of weird.”

Cy had been on medication to control his issues with attentiondeficit/hyperactivity disorder.

At one point, his primary care physician had changed medications.

That adjustment bought about another noticeable change in Cy.

“We’d notice, when we were sitting there talking to him, he’d roll his eyes at you,” Cy’s mother Stacey Walters said. “We’d get on him about rolling his eyes, and we were like, ‘Why are you rolling your eyes? He’d answer, I’m not.’ ”

He was getting too much medication, said Stacey, who works for the Dewey County Sheriff’s Office.

“So, I took him to the doc when he was like that and told him this isn’t right, there’s something going on,” she said.

The doctor told the family they needed to see a neurologist. When they saw the neurologist, it took only a matter of minutes to get a proper diagnosis of what was happening with Cy

Ṫhe doctor sat down and talked with Cy for just a moment, Stacey said.

“He turned around and looked at us and said, ‘He has Tourette’s.’ It was that quick,” she said.

Before the official diagnosis, the school called Stacey and asked her to come to the school.

The school’s staff thought he was having trouble breathing.

When she got there, he was talking to her, going 90 miles an hour, she said.

“So I was like he’s not having trouble breathing if he’s talking to me like that. I took a video and it sounded like he was making gasping sounds, which is a vocal tic,” she said. “Not long after that, I went to a Christmas program, and he was making all these jerks with his shoulders. I asked him what was going on. And one of the teachers said he’d been doing that for the last month. It was a motor tic.”

His dad tells a funny story involving “American Idol.”

“We were watching American Idol, which we watch all the time, and it was when they had James Durbin (2011) on there, and he had Tourette’s,” Scott said. “The very first time we saw him, they were talking about Tourette’s, and then I saw him, I was like, that’s what Cy has. He’s got Tourette’s. And this was quite some time before he got diagnosed.”

Scott likes to joke that he made the diagnosis before it was official.

Living with Tourette Syndrome

Tourette Syndrome is a disorder that involves repetitive movements or unwanted sounds (tics) that can't be easily controlled, according to the Mayo Clinic. For instance, people with Tourette Syndrome might repeatedly blink their eyes, shrug their shoulders or blurt out unusual sounds or offensive words.

“It’s created a lot of challenges over the years,” Scott said. “There’s a lot of side effects that come with Tourette’s other than ADHD. Some compulsive stuff. Some behavioral issues.”

The Walterses make it a practice to make sure each year that Cy’s teachers and staff know about his diagnosis.

“We let them know about Tourette’s and make sure they understood a lot of stuff that he does, he doesn’t have any control over,” she said.

Tourette’s is just the tip of the iceberg, Stacey said, and she points to a visual that the doctor gave the family.

The illustration shows the tip of the iceberg, above water, listing the motor and vocal tics. Underneath the water, however, is the rest of the iceberg, and it lists ADHD, behavioral issues, anxiety, Obsessive Compulsive Disorder, impulsivity and many other problems.

“He was initially diagnosed with ADHD when he was in kindergarten, first grade, and from there, it’s just kind of compounded,” she said.

The exact cause of Tourette syndrome isn’t known, according to research by the Mayo Clinic. It’s a complex disorder likely caused by a combination of inherited and environmental factors. Some research suggests Tourette can be hereditary.

For the Walters family, there was no known cases of Tourette in the family, save one distant link.

“My grandmother’s sister’s grandchild’s child, he’s an adult, and he’s a nurse. He was diagnosed with Tourette’s,” Stacey Walters said. “That’s the first time we had heard anything about it. We had no clue. No one had ever said anything about it. It’s the only way we knew.”

The effects on Cy have changed over time.

At first, it was just motor tics. Eventually, the vocal tics came.

“He’s had multiple different motor tics, multiple different vocal tics,” said Scott, who works for Oklahoma Department of Human Services. “Fortunately, he’s never gotten the worst of the verbal tics, which is the cussing. He hasn’t got there yet, thank goodness.”

That’s called Coprolalia, Stacey said. Coprolalia is the excessive and uncontrollable use of foul or obscene language and is a typical symptom of Tourette Syndrome.

“Maybe I have (developed it) and you just don’t know it,” Cy joked.

For the family, learning to live with tics is an ongoing process.

“Different things can spur different tics. Stress is a big one,” Scott said. “With his running, we’d occasionally see tics, but not very often. When he’s playing video games, not hardly a tic at all.”

Just watching a television show can increase Cy’s tics, especially if a show deals with or shows someone with Tourette’s. Take Barter Kings, a TV show the family likes that features a main character, Antonio Palazzola, with Tourette’s.

“Just watching that would increase his tics,” Scott said.

Words can be a trigger, too, Stacey said.

“He might hear a word, and it just resonates in his head,” she said. “It doesn’t have to be any specific word, just something that sticks, he’ll repeat it over and over and over again. That’s just part of it. He’s just picks up on those.”

If living with Tourette’s is hard for mom and dad, it’s doubly so for Cy.

Going through school as a kid now days is hard enough with the usual adversity kids face. Pile on top of that a disorder like Tourette’s, and all bets are off.

“It’s hard to make friends,” Cy said.

Scott agreed.

All the kids his age that have known him since his diagnosis when he was in elementary school have been great, Scott said.

“They all have kind of watched him, took care of him,” he said.

“They ignored the annoying stuff,” Stacey added.

“They don’t let that stuff bother them because they know how he is, they’ve accepted it,” Scott said.

Both Scott and Stacey admit to being overprotective with Cy when it comes to his friends.

Cy is drawn to some kids that his parents just might not want him to be friends with, ones who might not always have his best interests in mind, Scott said.

“Cy doesn’t always make rational decisions. He doesn’t really think about things,” Scott said. “He’s really sporadic. He’ll almost do anything on a whim. We’ve sheltered him quite a bit for that reason.”

Cy is easily manipulated, Stacey added.

“Where some kids have that ability to think this is right, and this is wrong, he’s just goes with the flow,” she said.

All Cy has ever really wanted is to be accepted by others as much as he accepted them, said Brenda Lee Geels, who’s kind of a like a “mom” to the cross-country team and a family friend.

“Over the years, I have loved watching Cy grow and mature from an unpredictable, squirrely kid to a caring and strong young man.”

For Cy, the bottom line is living with Tourette’s “kind of sucks.”

“It does give me an advantage, though,” he said. “Running.”

A saving grace

Cy started with baseball because his dad loves baseball.

Scott played in college and wanted to pass that along to Cy.

“We tried him in baseball first,” Scott said. “It just wasn’t materializing.”

“He would get bored in between,” Stacey adds. “He’s gotta do something that’s continual.”

Next up was wrestling. The first year was tough, but then Cy made strides in his second year on the mat. He went undefeated in conference, and he went to two state tournaments. In the first state tournament, he suffered his first loss. In the regular state tournament, Scott said, they don’t know what happened.

“He just laid over on his back and quit trying,” he said.

“I was probably just tired,” Cy offered. “I don’t know. I don’t really know what happened.”

Cy was diagnosed with Tourette’s during his time in wrestling. He just couldn’t focus, Stacey said.

“And then we found out about cross country, and we thought with his ADHD, it would be something that would make him work, make him tired. He found his thing with running,” she said.

They didn’t know how good Cy was until his freshman year.

“I met a friend, Dallas (Delao, then a junior on the team). And that’s when I started running with him,” Cy said. “I got to the point where, hey, I can probably try to beat him.”

He finished his freshman season 14th at regionals, and 30th at state.

So they practiced. And practiced some more.

“We did just exactly what coach had us do during cross country season. It would be Sunday through Friday we would practice,” Stacey said. “We would have Saturdays off, because that would be our usual meet days. But the rest of the time, he was out putting in miles. We would take him out and let him run the country roads and we’d time him, push him. And we were riding our bikes for awhile, but then we couldn’t keep up with him.”

Cy continued to make improvements his sophomore year, including finally beating Delao.

“About the third or fourth race, he got to Dallas and took off and really never looked back,” Scott said.

That season, he finished fourth in the rain at regionals. At state he got 12th place, which is two places from being an All-State designee.

His junior year, he was seventh at regionals, 11th place at state – one second from 10th place and All-State.

Meanwhile, during the off-seasons Cy continued to work hard.

Just don’t ask him about the riding lawn mower.

Scott would bring the mower to the course, measure how long it would take to drive the course, and then set it up as a race, runner vs. riding mower.

“It was the worst thing ever,” Cy said. “They did the worst thing to me. The mower always beats me, somehow, I don’t know how. I think they’re cheating.”

The family had high hopes for Cy in his senior season with an eye on a state title.

“We knew this year was going to be a special year for him, Scott said.

And it was. Cy didn’t win the state title, but he finished third in regionals and did finally grab that elusive All-State spot, finishing seventh – just six seconds out of a podium spot in third.

“Six seconds is probably about 20-25 yards,” Scott said. “He was right there.”

Watonga Cross Country coach Jim Bob Coleman said coaching Cy over the years has been both interesting and challenging but rewarding.

“Seeing Cy achieve his goals in cross country has been a great experience for me as a coach,” Coleman said. “From day one to his last race senior year at state has been a tremendous journey for Cy.”

The future Cy just loves to hear the

Cy just loves to hear the story about how he got his middle name.

Cy’s middle name is Young. He’s named after the baseball Hall-of-Famer Cy Young, a major league pitcher who still holds the record for most career wins in history.

“I told her when we were still pregnant, that if it was a girl, she could name the girl whatever she wanted,” Scott said. “If it was a boy, I gave her a choice between Cy Young and Ty Cobb. She chose Cy Young.”

“Cobb just wasn’t a middle name,” Stacey said, with a chuckle.

Cy Young Walters will make a name for himself running, not on the baseball diamond.

He will finish out his senior year in the spring by running track. Then all eyes are on college, where he’s already signed to run cross country at Northwestern Oklahoma.

Honestly, though, Scott and Stacey will tell you there’s anxiety when thinking about Cy leaving for college.

It will be a big move for Cy.

“He’s very excited to have signed with a college and that he gets to continue his running career after high school,” Coleman said.

Scott and Stacey have met with the coaches and athletic director at NWOSU and liked what they heard.

“What we got from all of them, their focus isn’t just sports, No. 1. It’s not even necessarily academics, No. 1. It’s really more making sure they take care of the kid, making sure they’re good. Then it’s academics, No. 2, and athletics, No. 3.

It will be a big deal for Scott and Stacey.

“I told (the coach) some of those fears,” Scott said. “She said she’s the kind of coach, where if a kid has a hard time getting up and going to class, she’ll ask them what time do you have your alarm set for? And she will set her alarm and she will call them.”

She will tell the kids, though, not to mistake her kindness for a weakness, Scott said.

“She says, ‘I’m going to be kind to you, nice to you, but I’m also going to make sure you’re doing what you’re supposed to be doing.’ I got a really good feeling from that with those coaches.”

Scott knows the perils of being a college athlete. He had some bad experiences in college with what coaches initially tell you in the recruiting process compared to when you get on campus.

“It’s two different stories,” he said. “That’s what I ran into. But I got a really good feeling with these coaches.”

Cy Young Walters started this life six weeks early, weighing in at 3 pounds, 10.6 ounces.

“He was a preemie,” his dad said. “He started out this world a little bit early.”

He was always the tiniest one, his mom said.

“We have pictures of him when he started cross country,” she said. “And all the other boys were really big and tall, and here’s teeny, tiny Cy.”

“I was tiny. I was just so tiny,” Cy said.

Now, most everyone knows Cy, or about him.

He’ll walk into a store, and they say, “Hey Cy, how are you doing?”

Or competitors he’s never met will wish good luck in a race.

“They just love me,” Cy joked. “I must be FAMOUS or something.”

You see, Cy Young Walters is just your typical teenager.

Except he’s not. Those who know him say he’s overcome much more than most people will ever face and that Tourette’s won’t hold him back. He’s not typical, he’s extraordinary with a bright future, they say.

“We’re just really, really proud of him,” Scott said.