Julian Cullen flips off his mother during a tic. People who have Tourette Syndrome cannot control their actions during these tics, which can include both vocal and physical tics.
Julian Cullen punches himself in the face. It is not a fake or joking punch — Julian’s fist slams into his face with full force.
Rachel Adkins turns to her boyfriend and kisses the cheek he punched.
Julian has Tourette Syndrome (TS) — a condition that causes people to have uncontrollable tics that can vary in effect and type.
“We’re trying to figure out a way to put metal inside a foam neck brace so the TS can’t choke him anymore,†said Michele Cullen, Julian’s mother. “I had to run to him three or four times in half an hour this morning, twice after just noticing the quiet. On both occasions, I ran to him and found him on the floor, face blood red, with his thumbs choking him.â€Â
Julian was not originally diagnosed with TS when he started having tics because the doctors confused those tics with side effects from his ADHD medication.
“For years, we were trying different medications to help the ADHD, and we kept getting more and more tics,†Michele said. “And we thought it was the ADHD stimulant medication, but of course we found out the medication had nothing to do with it.â€
Some people have TS suddenly go away with the help of medication — Julian’s tics suddenly disappeared as well but came back.
TS can be relatively harmless for the many people it affects. It also does not always come with coprolalia, the involuntary use of verbal obscenities. Unfortunately for Julian, his TS is both embarrassing within the public sphere and dangerous to himself.
“A normal person might see a larger person running down the sidewalk from in their car and want to say ‘Go, you!’†Michele said. “But someone with Tourette’s might roll down that window and say ‘Hey, fat-ass!’ It’s the very last thing you would want to say.â€
According to a study by the Centers for Disease Control and Prevention (CDC), 37 percent of those with TS have moderate to severe tics and boys are three to five times more likely to have TS than girls.
At an event called Tourette Syndrome Camp USA, Julian was around other people with issues similar to his own.
“The first night is scary because everyone is screaming, and it sounds like demons,†Julian said. “You start to close your eyes, and you hear ‘suck a dick.’â€
In order to separate him from what his tics do, Rachel asked Julian what he thought of naming his tics.
“We were all in the car — I think we were heading back to my house…and I said, ‘Well, we should give your tics a name,’†she said. “And he immediately came up with the name David. I have no idea why.â€
Julian said it’s much less difficult and awkward to talk about his issues in public by using the nickname “David.†Michele wants to make sure that people know that what is affecting Julian is not another personality but something completely out of his control.
“It’s really important to make sure people understand this is not a separate personality,†she said. “It’s just a way to differentiate between choices Julian makes and the things that the tics do.â€
The Cullens are raising money for Julian to purchase a service dog that can both protect him from taking hits that he directs at himself and prevent him from choking himself.
“Service dogs can lie on concrete with you and protect you, they can fetch your shoe, your phone, your pen,†Michele wrote on Julian’s GoFundMe page. “He can alert others when his master is in distress … This is the exact dog Julian needs to have. This puppy, the very one in that picture, has been inspected and researched and the trainers say this is the dog for Julian’s specific needs.â€
Normally, service dogs cost $15,000 or more, but a couple from Illinois has offered to train a dog for only $13,000. The Cullens still need to raise $7,000 more to afford the dog. People can help raise money on the Cullens’ GoFundMe page at www.atticus.dog.
