Ryan’s Hope : Teen, Family Learn to Live With Tourette’s Syndrome

Ryan Hughes surrounds him self with images of Bengal tigers. The posters and sketches tell others what he won’t say--that inside this shy, blue-eyed 17-year-old beats a brave heart.

The powerful creatures are Ryan’s inspiration. They remind him to be brave in the face of ridicule. Between the lines of a poem he wrote about man’s cruelty to the beast is the story of a boy unable to contain his outbursts, and the teachers who punish him because they don’t understand his condition.

One of his drawings is torn in two. The Moorpark High School senior ripped it because the tiger was less than perfectly drawn.

To Ryan, the metaphor is strong: It’s the separation he has felt over the years, whenever friends turn their backs on him because of his imperfection.

“I’ve been hurt by kids who did not want to do things with me,” Ryan said.

The “imperfection” is Tourette’s syndrome, a combination of gene disorders that in its most severe form can cause bizarre behavior--cursing, spitting and involuntary flailing of the arms are among its common symptoms.

At one point in his young life, when he was about 10, Ryan simply wanted to give up. Frustrated by his condition and the cruelty of his peers, he wanted to die.

“He wasn’t fitting in any place,” said his mother, Susan Hughes. “He wasn’t getting along at school. He always had a good heart, but his body was out of control.”

Church has been an important part of life for the Hughes family, which moved to Moorpark from Ryan’s birthplace, Cincinnati, in 1984. The boy was in church when he first expressed thoughts about suicide.

“We always told him that when good people die they go to heaven,” said his mother.

“If heaven is such a good place,” Ryan replied, “maybe I should just go there now.”

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Between the ages of 8 and 15, Ryan’s symptoms were so severe that he could not attend regular classes. He was hospitalized three times. He spat. A lot. He struck his mother, leaving her bruised. He swore incessantly. The smallest of insects terrified him. Sometimes he would imagine drains spewing forth spiders.

Eventually, when he was 14, Ryan was forced to leave behind his family--his parents Susan and Jim, and sister, Julie--to live in a residential treatment facility for nine months in 1994.

But Ryan didn’t give up, and today he’s starting to find his way in life.

“The delightful part about it is that he went from being in a mental hospital to being able to go home, and functioning quite well,” said Dr. David Comings, director of the department of medical genetics at City of Hope National Medical Center in Duarte.

Ryan now functions so well that for the last five semesters, he has been an honors student at Moorpark High School, where he is in special education classes.

Last June, he made a big step in his trek toward independence--he got a job as a bagger at Hughes Market in Moorpark. (There is no familial connection between Ryan and the store.)

“Ryan was extremely quiet when he started,” Hughes manager Bud Twitchell said. “That has definitely changed.”

The store has made some allowances for Ryan, Twitchell said, for example, letting him take breaks when it gets too hot. His medication makes him particularly susceptible to heat.

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“He’s always so friendly with the customers,” Twitchell said. “In this business, we say the bagger is one of the most important people we’ve got. They’re the last contact with the public as they walk out of the store.”

For the brown-haired teenager, who has endured plenty of negative and hurtful comments in his life, Twitchell’s words are a pleasant surprise.

“Bagging is fun,” Ryan said. “I stack the groceries so they make a perfect package. It goes with my obsessive-compulsive disorder.”

Depending on the severity of the disorder, symptoms range from attention deficits and hyperactivity to defiant behavior and rage attacks, said Comings.

Not all the symptoms are so disruptive, Comings said. However, they can combine to severely affect a person’s day-to-day existence.

A 1987 study by doctors at City of Hope, and another in 1992 by a group of New York researchers found that 1% of boys in grade school and high school have chronic motor and vocal tics, typical symptoms of Tourette’s syndrome. The disorder affects a similar percentage of girls, but their symptoms tend to be less disruptive to others, according to Comings.

“The females may tend to show more obsessive compulsive disorder, and not the tics so much,” he said.

The condition is not hereditary, but the genes associated with the various disorders can be passed on from parent to child. Advances in medicine allow doctors to identify the genes earlier than before.

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Ryan was diagnosed as hyperactive when he was 3 years old. At 7, he started treatment with Comings, and at age 10 was diagnosed with Grade 3 Tourette’s syndrome--the most severe form of the disorder.

“He’s been a complex case,” Comings said.

Ryan is able to talk about the disorder because of his treatment--counseling provided by the county Department of Mental Health, and advances in drug treatments. He also benefited from an understanding family, said his mother, 48, who gave up a successful real estate career five years ago to stay home with her son.

Ryan’s father Jim, 50, is a technology education instructor at De Anza Middle School in Ventura. Ryan’s 20-year-old sister, Julie, has not only been a great friend to her little brother, but has also made sure to include him in plenty of activities.

“I’ve got my disorder pretty much under control now. All that’s happening now is the little stuff. I can get a little bit goofy sometimes,” Ryan said.

Ryan’s mother, who has had two books published about her son’s disorder and how the family copes with it--”What Makes Ryan Tick” and “Ryan,” published by Hope Press in Duarte--said “goofy” means Ryan is showing symptoms of his old self, before the combination of counseling and 21 pills a day started doing some good.

Ryan’s parents have found comfort from other families.

“Aligning ourselves with other parents has been a real source of strength,” Susan Hughes said. “It does split up a lot of marriages, but we’ve been able to weather it.”

Adding to the pain has been a lack of understanding about Tourette’s syndrome by some relatives, who avoid Ryan to avoid dealing with his disorder. People they expected to be most understanding of children with learning disorders have, at times, instead been the biggest barriers.

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“I grew up thinking that teachers know what’s best, that principals know what’s best. But that was only for the normal kids,” said Susan Hughes.

It’s hard for people to understand.

A few years ago, a county school bus driver brought the bus to a halt and threatened to kill Ryan for being disruptive. However, Ryan’s family, struggling to deal with their son’s illness, decided not to press charges. And the driver eventually apologized.

Ryan understands how hard his family has worked to help him, and how close they have become because of it. But he isn’t comfortable with the idea of having a family of his own, let alone a steady relationship.

“I don’t think I need that burden right now. And I don’t want to have kids. I don’t want to take a chance of giving them what I’ve got. It would just be too much for me to handle,” he said.

For now, he’s looking forward to the day when he can move out of his parents’ house, perhaps into an apartment his grandmother owns in Moorpark.

“I want two dogs. Dogs love you the way you are,” he said. “They’re there for you whenever.”