Spend a morning in class with Zak Hollis, and the next with Johnathan Liptak, and you’re likely to come away convinced that these kids have precious little in common. Sure, they’re both White 5th grade boys in Albuquerque public schools. Yes, they both have quirky senses of humor. But the similarities seem to stop there.
Johnathan is freckle-faced and lanky, quiet and serious. Mid-morning in a modular classroom at the Family School, you’ll find him hunched over a workbook, brow furrowed in concentration behind his wire-rim glasses.
While the other kids sit in clusters at communal desks scattered around the room, chatting and collaborating, Johnathan zeroes in on his reading, one hand keeping up a steady drumbeat with his pencil — taptaptaptap. His eyes are glued to the page. You get the feeling he could keep this up for days.
Zak is husky, with a bowl of black hair and a mischievous grin he flashes frequently. As he reads aloud to his teacher at Chelwood Elementary, his head and shoulders jerk and twitch. His lower body squirms. His legs fold up under him in a variety of painful-looking positions.
His eyes dart up from the page, his attention carried away by the slightest noise or movement in the classroom. He reads well. But when he’s done, he’s done.
"Want to read another one?" his teacher asks. "Unh-uh!" Zak says, stuffing the reading materials back into his desk drawer.
If you know a little bit about Tourette Syndrome — from Ally McBeal, Not Another Teen Movie, or the best-selling novels Icy Sparks and Motherless Brooklyn — you might guess that Zak has the neurological disorder, which is characterized by a wide range of vocalizations and body movements called "tics." You might not guess that Johnathan, lost in quiet concentration, also has Tourette.
But contrary to popular myth, more Tourettic kids resemble Johnathan than resemble Zak. Fewer than 15 percent of people with Tourette, for instance, ever experience the most infamous of tics — coprolalia, or involuntary swearing.
Most have mild to moderate tics that can be temporarily suppressed in social settings like classrooms. But even the mildest manifestations of Tourette induce thorny learning and behavioral problems that are hard for teachers to detect and understand, and hard for schools to accommodate.
If the biggest myth about Tourette Syndrome is that it’s "the swearing disease," the next biggest is that it’s rare. Some studies have indicated that the condition is present in one of every 100 Americans; others have put the number at one in 1,000.
But a recent report in the journal Neurology contends that Tourette is quite common among the school-age population: Of 1,596 children observed in the Rochester, N.Y., school district, a whopping 8 percent of special education students met the criteria for Tourette; in the general school population, a full 3 percent of students had the disorder.
Despite those numbers, very few schools in the United States are ready to meet the needs of students like Zak or Johnathan. "They just don’t fit into the usual boxes of disabilities," says Sandra Hollis, Zak’s mother.
As a result, students with Tourette often flounder, both academically and socially — even though many of them, like Zak and Johnathan, have unusual intellectual gifts. One of the schools’ biggest problems is that kids with Tourette differ so drastically from one another; you can’t find a one-size-fits-all approach to the condition.
Just ask Johnathan’s teacher, Ray Maseman, who has another student with the disorder in his afternoon class. "You wouldn’t believe they both have the same thing," he marvels. "They seem like totally different kids. It’s fascinating, really."
Fascinating and challenging. You’ll see, when you spend a little more class time with Zak and Johnathan.
Watching Mary Ann Putnam work her classroom, smiling her way from desk to table to computer station with a calm admonition for each of her eight special education students, you might imagine that nothing could faze her. For the most part, you’d be right.
But in the summer of 2001, when she found out that Zak Hollis would be joining her 5th grade class in the fall, Putnam admits to feeling a momentary stab of panic.
"I thought, ‘Uh-oh, my year’s going to be turned inside-out.’ "
Putnam had never taught a student with Tourette Syndrome before — at least not one who’d been officially diagnosed. And with his severe full-body tics, Zak isn’t just any kid with Tourette.
Putnam knew through the grapevine that his first four years in school had been anything but smooth. His tics had begun to multiply during that time, a typical pattern with Tourette.
By the time Zak entered 3rd grade, he was having trouble reading regular-sized type — not because of his eyes, but because of his neurological idiosyncrasies. His handwriting deteriorated as he started to lose motor skills.
By the end of 3rd grade, a boy who made straight A’s his first two years was practically dysfunctional in a traditional classroom.
For Zak, that wasn’t the worst part. "The other kids made fun of me," he says. "They’d call me Tic Boy and stuff. They’d say, ‘You’re retarded.’ I just said, ‘No, I’m not,’ and I’d try to walk away. Sometimes they’d trip me or something. I tried to tell the teacher but she’d say, ‘Oh, just walk away.’ "
In order to read, write and concentrate, Zak needed tailor-made assistive technology. Instead, his school moved him into a low-functioning classroom.
In the spring of 2001, Zak’s frustrated parents took the Albuquerque school system to court, demanding appropriate learning tools. They won.
The next fall, it would be up to Putnam and her colleagues at Chelwood Elementary to find ways to help Zak learn. The first step was a series of meetings between the Hollises and the staff at Chelwood.
The other kids made fun of me. They'd call me Tic Boy and stuff. They'd say, 'You're retarded.'"
"Zak’s teacher said right away, ‘I don’t know a thing about Tourette.’ I love to hear that," says Sandra Hollis, who knows plenty; she heads up the local chapter of the Tourette Syndrome Association.
"That’s what you need with a TS child — that willingness to learn, to adapt to the kid, because they all need different things."
Glance around Putnam’s classroom, and you can’t miss the creative accommodations made for Zak. In the back corner of the room, two gray dividers create an open-ended cubicle where Zak can work at his computer with a minimum of distractions.
"He usually goes back there to do spelling and math and writing," Putnam says. "Anything where he really has to focus."
Zak’s computer now has a Zoom Text feature that allows him to scan and enlarge documents. "Plus, we put large-print stickers we ordered out of a magazine onto the keyboard so I can read the keys," Zak says, pointing at the keys.
An educational assistant, Martha Sedillo, works with him three hours a day. She blows up worksheets to 200 percent size, fills in the bubbles at his direction on standardized tests and laughs at Zak’s jokes, which flow freely. "I call him Zak-a-roony," Sedillo says.
"I call him Zak-a-riot," says Putnam. "He’s so funny."
Now that she’s offered a compliment, Putnam asks Zak: "Do you want to do a reading thing?"
"Not really," he answers, grinning. He sits down at his regular desk, out in the open classroom, and pulls out a giant-print copy of last night’s reading homework.
When Zak hits a word he doesn’t know — "amuck" — Putnam sends him off to find his dictionary, and the magnifier that helps him read it. Zak comes back with a plastic, bookmark-sized strip of plastic and tracks down the new word, squirming and fidgeting. Putnam puts her finger on another word just below, waiting for Zak’s attention to come back to the page.
"Do you know what that one is: ‘inference’?"
"Yes," Zak says, smiling. "It’s a big word."
"See what I have to put up with?" Putnam says, rolling her eyes.
From Day One, Putnam made sure Zak’s classmates understood what they were dealing with. Zak gave his own "in-service" to explain the condition. "They asked a lot of questions," he recalls. "Like, ‘Is it contagious?’ " He laughs, thinking about his response. "I wanted to tell them it was, but I didn’t."
The Truth About Tourette
The disorder is named after Georges Gilles de la Tourette, a French neurologist who described the symptoms of nine patients in 1885. Before Dr. Tourette’s research, those with the disorder were often considered mad or "hysterical."
The exact cause of Tourette Syndrome is unknown, but researchers do know that it is transmitted genetically. Studies indicate that the symptoms of Tourette stem from an imbalance of messenger chemicals (also called neuro-transmitters) in the brain.
Nobody knows how many people have Tourette Syndrome, especially since many milder cases go undiagnosed. The National Institutes of Health officially estimate that 725,000 Americans have some form of the disorder. Most studies suggest higher numbers. They also indicate that Tourette occurs in all ethnic groups, and that men are three to four times more likely than women to have the disorder.
Symptoms usually begin in childhood and multiply during adolescence. The types of symptoms change over time. Tics and vocalizations wax and wane in both severity and frequency.
Many Tourettic people see a marked improvement in their late teens or early 20s. As many as one-third experience remission in adulthood.
Three-fourths of people with Tourette also have obsessive-compulsive disorder (OCD), characterized by anxious behavior such as walking in precise patterns or repeatedly washing hands. A large percentage also have attention deficit disorder, with or without hyperactivity (ADD or ADHD).
Most Tourettic people require no medication. When symptoms are severe or disabling, popular medications include Haldol, Catapres, ORAP, Prolixin, Permitil and Klonopin. Stimulants such as Ritalin, often prescribed for treatment of ADHD, may increase tics.
The social consequences of Tourette — from being taunted to being shunned and ostracized — are more harmful to children than the physical. Because their symptoms increase with stress, students with Tourette may underperform on standardized tests. Evaluation specialists test children with Tourette off the clock to decrease their stress and attain more accurate results.
The taunting and teasing have mostly stopped. The year before, Zak was isolating himself on the playground; now he captains one of Chelwood’s floor-hockey teams. And despite his special cubicle, Zak blends fairly smoothy into Putnam’s class.
Just this morning, another student came in with exciting news. "He told me he has a friend at his apartment who has TS and stuff. I just found that out!" Zak exclaims.
It’s been a year full of discoveries — for Putnam as well as Zak and his classmates. "Wow," she says. "We’ve seen so many different phases. You never know what to expect from day to day."
In just the past couple of months, Zak has developed a spitting tic ("I aim away from people," he says) and more vocal tics — whoops, barking coughs and coprolalia.
When he tries to keep them quiet in class, the effort wears him out. It doesn’t help that the tics make it tough to sleep at night. "I fall asleep for about 45 minutes to an hour at school," Zak says. "They let me lay my head on my desk for a little bit."
Far removed from her initial worries, Putnam says she has become a different — and far more flexible — teacher.
"Working with Zak has made me more sensitive to the needs of the other kids. You’re always supposed to see them as individuals, to see their different needs and abilities," she says. "But you don’t always feel like you have time for that.
"It’s been an educational experience," she says, patting Zak on the shoulder. "There’s no doubt about that."
Johnathan Liptak is still hunched over that workbook when his teacher announces it’s time for the class to come together and share the results of last night’s homework.
As the other kids dig out their homework and start to meander toward the front and center of their big modular classroom, Johnathan continues to read and tap his pencil.
"Johnathan," Ray Maseman says evenly. "Um, Johnathan? Would you mind helping us move this table out of the way?"
Johnathan looks up, a thunderstruck expression on his face. It takes him a few seconds to register what’s happening. Then he claps the workbook shut, springs to his feet, and gets to work folding up the table.
"Whose water bottle is this?" he calls out, holding aloft a plastic bottle somebody left on the table. "Whose bottle?" Once again, he’s all business.
Maseman sees this every day. "Johnathan has the toughest time transitioning. He needs more time when we shift from one activity to another. But then once he makes the transition, he’ll lock back in."
It’s one of the behavioral patterns that Johnathan’s previous teachers had a hard time understanding. "His teachers have all remarked that his attention is great," says his mother, Lynda. "But he has deep attention, not broad attention. He gets focused on a specific detail and doesn’t see the whole picture. He’ll forget his homework because he can’t remember he has any. He’s here and now."
That was a problem in 4th grade, when Johnathan’s tics were multiplying — and his teacher was a no-nonsense sort who did not make exceptions. "Johnathan has a great memory for spelling, from when he was very little," his mother says. "Even if he doesn’t know the word, he can spell it, so he’s always the best speller in his class. But because he would forget his spelling homework, his teacher wouldn’t let him be in the spelling bee and he was just crushed. She was treating everyone the same, but it was hard for Johnathan. She seemed to think he was being lazy, but really he wasn’t able to remember that he had spelling homework."
Thanks to his forgetfulness, Johnathan got sent to detention regularly. As his tics became more noticeable, exacerbated by stress, the other kids started to tease him. As the year wore on, says Lynda Liptak, "He got very depressed. He started saying things that were scary, like he wished he had never been born."
Exhausted and frustrated from trying to hold in his tics, he had frequent rage attacks at home. Lynda tried explaining Johnathan’s troubles to his teacher, and to school administrators, "but it’s so hard to get across. He has a lot of difficulties, but they’re not the kinds of difficulties that show up on state tests."
They do show up in the classroom. After the folding table has been removed, and the water bottle returned to its rightful owner, Johnathan looks up and makes a wisecrack. "Don’t sit there," he tells a girl who’s easing onto a sofa in front of the chalkboard. "The reporter has special privileges for the couch."
The girl laughs politely but uncertainly. "He’ll tell a lot of jokes that he thinks are hilarious," Maseman says. "And I’ll get them. But the rest of the class just thinks, ‘huh’?"
Johnathan’s sense of humor, combined with his intensity, has limited his ability to make friends. "His outlook just doesn’t connect with other kids his age," Maseman says.
I've started writing a book. I'm going to try to publish it.
Johnathan mixes reasonably well into his class though. The Family School is a half-day alternative run by the Albuquerque Public Schools, attracting a wide variety of kids whose parents want to home-school them for half a day. "Everyone’s pretty accepting here," Maseman says.
It helped when Sandra Hollis visited the class at mid-year, helping Johnathan make a presentation about Tourette. "It was pretty neat," Maseman says. "Johnathan was really comfortable sharing. We discussed how everybody’s got something kind of weird about them, and how Johnathan’s just sticks out in a more obvious way."
Maseman has asked Johnathan and another boy to write down the other students’ homework questions on the chalkboard. The students were asked to concoct five "inquiry questions," and they’re going to vote on a few to tackle as a group.
At first, the only thing that seems amiss is Johnathan’s determination to keep his side of the board neat. On the other side, the questions slope and slant and drift off the edge; Johnathan is constantly erasing and straightening his lines.
When a classmate calls out a question he doesn’t like, his frustration flashes to the surface. "You just answered yourself with that question!" he complains, stomping a sneaker. When another student starts chatting rather than calling out her final question, Johnathan gets even more agitated.
"Read your fifth one!" he demands, walking toward the girl and leaning in her face before remembering to add "please." When she reads her question, he sprints back to the board.
"He’s a great group leader," says Maseman. "But he does get a little bossy."
Johnathan’s perfectionism stems from obsessive-compulsive disorder — a second neurological condition that usually accompanies Tourette. "I don’t like to stop things when I start," Johnathan says after school, sitting cross-legged in his room and spinning the wheels of an overturned plastic tractor as he talks.
"Like the one book I’ve read about Tourette’s was God Made Me Special!!!!.” "We borrowed it from Sandra Hollis, and I read it and then I said, ‘Here, Mom, I’m finished.’ And she said, ‘What? Johnathan! You read it too fast!’ "
"I’m always reading things in a day or two. The only reason I stop when I do is that my mom wants me to go to dinner or whatever."
While this year’s teacher has adapted to Johnathan’s compulsive rigidity, his mom can’t help worrying about what will happen down the road. "I’m scared about junior high," she says. "That’s when you go from teacher to teacher and the rules change from class to class, the kids change, and you have to be organized. I see failure looming in that kind of environment."
Johnathan has no time for such worries. After school these days, he’s concentrating on being a writer and illustrator — not when he grows up, but right now.
"I went to the library once and saw a young author’s guide to being published," he says, giving the tractor wheels a workout with both hands. "So I picked that up, and now I’ve started writing a book. So far I don’t have a title, but it’s about a rabbit, a cat and a donkey."
His face opens into a smile so wide that it makes two vertical creases down each freckled cheek. "I’m heading for the big stuff. I’m going to try and publish it. Maybe I’m too young to write a novel. Anybody can say what they want, but I’m still gonna try."
Brett’s Tourette’s
A tall, brown-haired boy named Brett entered the movie set. Brett was supposed to be a boy who had Tourette’s in this movie.
"Should be easy," Brett thought aloud, "considering I really have Tourette’s."
Now before I can tell you about what he’s doing in a movie audition, I’ll be glad to give you a brief description of Tourette syndrome: Tourette syndrome is a neurobiological disorder that causes you to have tics. Not "ticks," but tics; which are little jerks or noises caused by the syndrome.
There are motor tics (jerking your arm, leg or neck, to list a few) and verbal tics (weird noises out of your nose or mouth), but those are just a few little things that I listed — there are tons more, like hair-pulling and some other stuff. Now, dear reader, we return to the story.
As time goes by, though: "Cuuuut! Kid I thought you had this Tourette thingamajig and could really do this thingy right — since you really have it! Yer jus’ not jerkin’ your twitches enough! Kid, ya can’t possibly be the boy, nope, not you!" said the director, speaking more rapidly than Brett had ever heard before.
Brett really thought the director was a twitching idiot, so he screamed, "Fine then!" taking things as personally as anyone would ever dare; and at the same instant he ran out of the studio, then turned back and screamed again, "I quit!"
He started walking toward his house feeling extremely mad at everybody and everything. He opened the door and slammed it behind him. He sat at the end chair and started eating the casserole his mother had just served him. It was dinnertime at Brett’s house. A time of stress.
"How was your day working on the Tourette movie?" asked Brett’s mother. Brett didn’t answer. Brett’s mother inquired again. To Brett, this sounded like she was being overly nosy and he felt overcome by feelings of disappointment. Brett stopped eating, looked up to the ceiling and then gave his mother a piercing look. His sister Corretta said, "Don’t try to get anything out of him, mama, he’ll just get mad." She said this very bossily, like most things she said.
"Urrrrgh!" grunted Brett as he kicked at the wall.
"Eeeahoo-hee-hee goo-ya," laughed Veronica, his baby sister, as she always did when Brett kicked at the wall; she liked the noise.
Brett’s mother said, "Don’t kick at the table, Brett."
"I never did! I kicked at the wall, not the table!"
Brett stopped and said nothing for at least ten minutes. The rest of the family kept quiet too, except for an occasional "Pass the butter please," and "Can I have seconds?" and Veronica with her occasional squealing noises.
Brett felt like he had the worst dinner in his life, though he knew this wasn’t true because he had had lots more bad dinners, most notably one where they went to a restaurant on his birthday, and there was a clown that insulted Brett very badly without knowing it.
The family had been at a restaurant when a clown making balloon animals came to their table to make toys for each kid. When he came to Brett, he twisted the blown-up balloon and it made a horrible screeching noise to Brett’s sensitive ears. Brett hated certain noises as they caused him a feeling of pain and intense irritation.
When the clown was done he made a joke about how Brett held his ears shut which made Brett feel humiliated. Thinking about it made him think of lots of other bad events (sometimes innocent coincidences), insults, and people who had bad-mouthed him.
Suddenly Brett got up (trying to cover his tears) and screamed, "I’m going to bed!" and ran out in the hall, then into his room.
As he lay there in bed, a strange feeling overcame him. He didn’t feel quite like he usually did: He didn’t feel as if he should have never been born. He felt — what did he feel? It wasn’t sadness, as it usually was; yet it was nowhere near happiness. What ever it was, it was something different, something as different as his Tourette’s.
And things don’t stay as they did here in the story: they changed for the better, and Brett lives a good life. He didn’t stay as he did in the story; he got better, and begins to understand himself, his friends, and everybody near him.
For the rest of his childhood; whenever something bad happened, Brett tried to remember how different he felt that night, and when things are not right, not at all, or just a tad not right, he thinks of his Tourette’s, and about how strange life is.
