BIG BROTHER'S LITTLE BROTHER Be the first reader to comment on this story 10:15 - 01 June 2006 It's the hard-to-hide medical condition brought into the mainstream by TV's Big Brother. But what is it really like to live with Tourette's Syndrome? Cat Turnell reports When you look at Shaun Canham, there's not much to distinguish him from a lot of other nine-year-old boys who have bags of seemingly unstoppable energy. Dressed in casual clothes and with cropped blond hair, you wouldn't look twice at him on the street. Well, perhaps not at first. Shaun, who gives the sweetest of smiles to our photographer as his mum, Jenny, puts an arm around him, has Tourette's Syndrome. As Jenny drily notes when we begin the interview in the kitchen afterwards: "Big Brother's brought Tourette's to light, then?" In truth, that's exactly why we're here. When Pete, a rock singer from Brighton, became a housemate on Channel 4's reality TV show a couple of weeks ago, much was made of the medical condition which causes him to twitch and swear uncontrollably. Even now, many think Pete is being exploited by the show's producers so viewers can rubberneck at his expense. Others believe it raises awareness of a condition known all too simply as "the swearing disease". Jenny, a mum-of-four from Beaumont Leys, has not watched a lot of Big Brother, she confides - but she has seen Pete, and likes him. "My daughter's in two minds about it," she says. "She can't decide whether he's being exploited or if it's helping. "She was watching it with a few friends and one lad started copying Pete and laughing. She went, 'You pathetic idiot, shut your mouth'." The hallmarks of Tourette's show themselves in involuntary movements and tics and, like most sufferers, Shaun's tics are worse than his "coprolalia" - the swearing. Only about 15 to 30 per cent of people with the syndrome also have the taboo words aspect. Much more common are the body movements: blinking, throat clearing, coughing, neck stretching and shoulder shrugging. As we talk, Shaun is using a trainered foot to scrape away at his left ankle and occasionally his hands and arms will jerk upwards as if he's conducting an invisible orchestra. He's blinking too, as if he's staring directly into sunlight. These are just a few of the tics he is currently going through. It waxes and wanes, says Jenny. Some days, he can have half a dozen, some days just a couple. "We don't notice now so much, because it's just how Shaun is," says Jenny. "We're just cagey when we see a new one. "You don't know what it comes with or how bad it's going to get." Recently, one of Shaun's teachers confided to Jenny that she felt physically ill watching the nine-year-old spasm in the classroom. Sitting at his desk, Shaun's head would continuously whiplash backwards. It looked - and was - painful. Shaun was diagnosed with Tourette's at the age of five - while his parents were still coming to terms with the news he had obsessive compulsive disorder and attention deficit syndrome (ADS). "I'd never heard of Tourette's," says Jenny. "I was still trying to get my head round the other stuff. "I spent the next seven months on the internet finding out more. But no, I don't think many people are aware of it." It's known that about 29,000 children and adults in Britain have the genetic illness, although many consider the figure to be an underestimate. Some of the condition's involuntary movements can be controlled, for seconds or hours at a time, but it only postpones more severe outbursts for sufferers. It's known that stress also increases the volatility of the condition. Shaun takes fish oils to control his attention deficit, and they work. Then there is Haloperidol for his tics and ADS, and he has Melatonin to help him sleep. While we continue talking, Shaun buzzes in and out of the kitchen like a rocket-fuelled bluebottle. "Do you love me," he says to his mum, who says yes. "Do you love me, though?" he says again. "Do you love me, really?" "This is his calm stage," nods Jenny, as Shaun goes into another room to bring out a folder of Yu-Gi-Oh collectors' cards. He has almost 6,000. "I couldn't have a normal house, Shaun's the most normal one in here," she laughs. "He can't sit still and never sticks to one task." Having a youngster with three debilitating medical conditions is not easy and she gives him as much structure as possible. Take, for example, a family shopping outing recently. "We told him we were going to Tesco. He was fine in there, it was only afterwards in another shop he started to freak out about it. That was because we had only told him we were going to Tesco. He needs to know what's happening in advance." On one occasion, the family were in a queue for the checkout when an old man with a zimmer frame told Shaun what a good lad he was. His mum smiled nervously. Shaun, taking his invisible cue, grabs the zimmer frame from the old boy, telling him, "Yeah, but you can't ! &*ing walk without that, can you?" Life has its moments, all right, says Jenny, taking a hearty drag on a cigarette. "Life with Shaun is like a roller-coaster. Up and down, round and back, you never stop, and if you do, it's only to start again." There are also the obsessions. The youngster can't be woken up for school before 7.50am, while after 8am is too late. He must eat at 4.30pm and, although he really doesn't like much food other than broccoli and meatballs, he is always asking for more. Always. In the 90 minutes the interview takes, Shaun must have asked for biscuits, fruit, sandwiches and tea a dozen times. He had eaten an hour before. But how does Shaun feel about his Tourette's - does he get any stick off anyone at school? "I don't really notice," says Shaun, confidently, before suddenly changing his mind. "They just keep taking the mickey out of me," he says, fiddling with his fingers, and then he's up and off again. "Many times he's come back from school sobbing," says Jenny. "I don't know what the future holds for him. We've got more crime, more violence and more kids who don't care. "It depends who he associates with, who his friends are. To me, that makes the most difference." Walking to the front door, Shaun ambles out of the lounge to say goodbye at his mum's request. "Bye," he says, with a perfunctory interest ably demonstrated by most children who would rather be doing something else. "Mum?" chirps the youngster, eyeing her quizzically and craning his neck to hers, "can I have a sandwich?" There's a look of "I told you so" in Jenny's eyes as she closes the door.