Jaylen's challenge: A mission to prevent bullying while creating Tourette Syndrome awareness
BY ROGER MOONEY
LAKELAND – Jaylen Arnold was 8 when he walked into his old elementary school to speak with two dozen or so former classmates, many of whom had recently taunted and physically bullied him.
Jaylen was scared. His mother, Robin, walking beside him, was proud.
The meeting was Jaylen’s idea. He wanted to explain what others saw as his unusual life.
Jaylen has Tourette Syndrome, a neurological disorder that causes sudden unwanted and uncontrolled rapid and repeated movements or vocal sounds called tics. He was an easy target, and the abuse from his peers sent his tics into overdrive.
He was classified as hospital homebound by his doctor and Robin removed him from the school.
An education choice scholarship was about to change Jaylen’s life for the better.
It allowed him to attend a private school near his Lakeland home. There, Jaylen found schoolmates who looked past his Tourette’s, autism and obsessive-compulsive disorder and saw a likeable, intelligent and talented friend.
“He was accepted and loved,” Robin said.
It was acceptance and, if not love, at least tolerance that Jaylen wanted for others when he returned that day 14 years ago to his old school and met with his old classmates. He wanted to teach them about Tourette’s, hoping education would lead to understanding and that would reduce the bullying if not remove it completely.
“I wanted to go back and educate those who were tormenting me because who knows what kind of chain reaction that could have,” Jaylen, now 22, said.
There was a chain reaction, and it was nothing Jaylen or his mom envisioned.
The immediate response came from some of the students who bullied Jaylen.
Then … BOOM!
The local newspaper ran a story about the meeting. Then a Tampa Bay area news station ran a story. Then CNN picked up the news station’s story, and Jaylen’s meeting and antibullying message spread around the country and overseas.
Soon, letters of support, some filled with money for Jaylen’s foundation, began arriving at the house from as far away as Italy and Germany.
“I was like, ‘Whoa! This was supposed to be one classroom,’” Robin said. “We didn’t have a foundation.”
They scrambled to start one: Jaylens Challenge, which promotes the prevention of bullying with the mantra, “Bullying No Way!”
In the 14 years that followed, Jaylen has spoken to more than 300,000 students face-to-face in 38 states and the United Kingdom and educated many more online.
He was featured on the Ellen DeGeneres Show and People Magazine.
He appeared in the CNN special “Human Factor” and was one of four children with Tourette’s featured in a documentary on Discovery Health called “Tourette’s Uncovered.”
Jaylen has received the Young Hero Award for Philanthropy, The American Spirit Award from Katie Couric, the Community Hero Award from the Tampa Bay Lightning, and the World of Children Award, also known as the Nobel Peace Prize for youth.
He had his own show on Nickelodeon, received TLC’s Give A Little Award and partnered with NBA megastar LeBron James for an antibullying campaign on James’s Instagram account. Schools have included Jaylen’s story in their antibullying curriculum.
Jaylen is the only American to receive the Princess Diana Legacy Award. He was honored for his philanthropy and traveled to London, where he met Prince William and Prince Harry at the awards ceremony.
Victims of bullying have told Jaylen they contemplated suicide but didn’t go through with it after hearing his story.
“Mindboggling,” Jaylen said.
‘I see you’
Jaylen is a senior at Southeastern University in Lakeland. He’s majoring in film with a minor in business. On a recent afternoon, he and Robin told the story of Jaylens Challenge at a campus food court. Students stopped by to say hello to their friend, always greeting Jaylen with a hug.
It was that way at Victory Christian Academy, the K-12 private school in Lakeland that Jaylen attended first on a McKay Scholarship then on the Gardiner Scholarship. Both scholarships have been combined to form the Family Empowerment Scholarship for Students with Unique Abilities (FES-UA). It is managed by Step Up For Students.
“The kids loved him,” Robin said. “No one held his Tourette’s against him. He got more one-on-one help from teachers also. His Tourette’s was never a challenge for him at Victory. Neither was Autism. He received all the help he needed.”
“The scholarship was very beneficial.”
Robin’s daughter, Jyne’la, also has Tourette Syndrome but tried to hide it until it became severe at the age of 16. She attended Victory Christian also and received the FES-UA scholarship her last 2 years. She now studies dental hygiene at Valencia College. Jyne’la and Jaylen post videos on Tourette Syndrome and antibullying on social media.
While Jaylen eyes a career in Film, he will always remain an advocate for the Tourette Syndrome population and for those who have been bullied for any reason.
“How are you going to expect people to understand it or stop looking at you weirdly unless you do your best to educate them?” Robin asked. “I think that’s our responsibility.”
Actor Dash Mihok has Tourette’s. He saw the CNN story on Jaylen, reached out to Robin and has joined Jaylen at many of the events, sharing his story as well.
“Jaylen embodies the courage coupled with the beautiful mindset of, ‘What have I got to lose? I can either be ostracized, or I can do my best to spread love and hopefully expand people’s minds,’” Mihok said. “(He plants the seed) that opens a possibility of someone being reminded that they are visible and, certainly, folks with Tourette’s don’t really have the option to not be.”
Jaylen’s message resonates with children and teenagers, because it’s easier for them to connect with the speaker when the speaker is their peer. But Mihok has seen Jaylen connect with the adults in the room – teachers, school administrators and parents – and he said that goes a long way towards creating and understanding and tolerance.
“Compassion, kindness, bravery and action to create a better space for all to live in and exist is easier than we think,” Mihok said. “We have seen it front and center countless times. It just takes a messenger who cares about every single person, no matter any circumstance. I see you. You are visible, and you matter.”
There is Hope
In 2018, the Florida Legislature addressed the staggering number of schoolchildren who are bullied each year by creating the Hope Scholarship.
Managed by Step Up For Students, the scholarship removes the victim from the adverse environment by providing families with financial assistance to send a child who suffered from bullying to an eligible private school, or to transport him or her to a public school in another district.
“It’s so much better to help one than none,” Jaylen said. “That’s always been our motto at Jaylens Challenge: if you can change one kid’s life, it’s worth it. All the effort is worth it. I think the Hope Scholarship is a great thing.”
Jaylen’s foundation uses rubber bracelets to underscore that point. The bracelets are light blue and yellow. Light blue is the color of Tourette’s awareness. The yellow signifies the dawning of a new day.
They were designed by Jaylen when he was 8 and still searching for that day when he would be normal.
“Normal is a setting on a dryer,” Robin said.
“Who wants to be normal. That’s boring,” he said.
It’s not as bad as it feels
Jaylen will stand in front of a group of schoolchildren, holding a piece of paper.
“This is what happens when you call someone stupid,” Jaylen says as he begins to crumble the paper.
“This is what happens when you call them ugly,” he says.
He stops when the paper is just a ball in his hand. Then he unfolds it and shows everyone the wrinkles.
“These are the scars,” he says.
Jaylen tried to manage the physical (one classmate poked him in the eye with a pencil) and verbal attacks by his original classmates, but his Tourette’s became so exacerbated, that the tics began physically harming him. The tics caused him to rip his clothes and chew the buttons off his shirt due to extreme stress caused by the bullying.
It only made things worse.
The “Tourette’s Uncovered” documentary, made when Jaylen was 8, shows his tics at their worst. He can’t sit still. He can’t sleep because he can’t lie still in bed. At one point, Jaylen yells, “Everybody has a happy life, but I don’t. I don’t have any enjoyment. I just wish I could be normal.”
It’s hard to watch.
“It’s just sad,” Jaylen said now, “because I really had no idea that everything is temporary. The bullying, the severity of Tourette’s. I’m always going to have Tourette’s and autism, of course, but (at that time), I saw no end to that, and that is my main driving force for kids now, because I know there are so many youths who feel the same way, and I’ve been there.
“You don’t have the worst life in the world, it just really, really feels like that because of the way people treat you and the circumstances.”
The tics can be controlled with medication, and they can calm down and become less noticeable with age. Plus, those with Tourette’s become very good at hiding them.
“Hiding it doesn’t do any good,” Jaylen said. “It doesn’t fix anything.”
Jaylen and his peers are older now, of course, and more mature. When a classmate asks him about his tics, he explains he has Tourette’s, then explains what that means.
“And then we move on,” he said.
Thanks to Tourette’s advocates like Mihok and himself, more people today are familiar with Tourette’s, so Jaylen doesn’t need to explain it as much as he had in the past.
Jaylen said awareness has come a long way since that day when 8-year-old Jaylen mustered all his courage and walked into that classroom. He only wanted to tell a small group of kids in Lakeland what Tourette’s syndrome was and how their actions made dealing with it worse – and maybe make life a little easier for anyone who was being picked on.
“We just wanted to help that small classroom of kids,” Jaylen said. “I never dreamed we’d have the opportunity to help kids worldwide.”
Roger Mooney, manager, communications, can be reached at firstname.lastname@example.org.