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“When he first started swearing, you do a big intake of breath and think ‘oh my gosh, now what am I going to do?’ At that point I don’t think I was even able to support him. The emotions took over and I just literally cried for two days…I was sad. I’d lost part of my son.” Kristy, mum to Connor, age 12
It is believed that 1 in 100 school children are affected by Tourette’s Syndrome, mostly boys. There is no cure, but there is hope, thanks to a pioneering treatment programme at Great Ormond Street Hospital.
This one-off, hour-long documentary follows the lives of three boys and their families over a six-month period as they share the reality of living with the condition and the daily obstacles they face. This is their story, in their own words. They are filmed at home and in public and both the boys and their families share their personal thoughts direct to camera in individual interviews which are woven into the programme.
It offers a compelling insight into Tourette’s and how it can be treated, with unprecedented access to Great Ormond Street’s Clinic, which deals with the most severe and complex cases in the country.
Callum, age 9, wants to be an astronaut when he grows up and proudly shares his impersonation of an alien with Tourette’s. His mum Maria explains he started by getting eye tics and now gets new ones all the time. Callum says: “Other people stare at me and it’s annoying and sometimes I just want to go over there and tell them that I’ve got Tourette’s and I can’t help it, can you stop staring at me? Animals are easier to be with than people because the animals just ignore you because they can’t talk or say anything.”
Connor is age 12. He says: “I look normal but I happen to have Tourette’s Syndrome. I can’t help shout, swear or do movements. I call my Tourette’s Johnny because it’s Johnny who shouts and swears and me who doesn’t shout and swear.”
Connor’s dad Carl describes him as: “Loving, caring, funny, sensitive, drives you mad, pushes you to the limit. And the next minute he makes you proud to be a parent. And then he’ll push you again.”
Connor’s swearing in public is so bad that just a visit to a coffee shop can be eventful. Carl says: “We go into cafes or occasionally a bar and it’s normally quite busy. But then it goes quiet and then you get the looks of disgust, or the smiles, and then slowly one by one they disappear and you end up sat on your own.”
Connor’s grandmother Linda says: “He does come out with some extremely strange expressions, that he doesn’t actually understand himself…I’ve adjusted by finding a lot of it amusing and if we’re upset at all we come home and do that privately.”
Connor describes his tics: “It’s like a volcano. If the volcano doesn’t explode, the world will blow up. And If I don’t do my tics, I get angry and cross and stressed.” Connor can also become physical and at times lashes out at his parents.
Connor’s dad Carl shares his fears: “Today’s society…people aren’t forgiving. If he was to blurt something and then try and explain why he blurted it, they wouldn’t listen. If he said it to the wrong kids at the wrong time he’s going to end up in a mess. That’s what worries me, is him getting hurt physically and that will also hurt him mentally. I don’t want that to happen. Connor is very sensitive. I don’t know if he’ll totally understand it, if he gets a real good kicking, which is quite likely he’s going to get.”
Marco, age 10, has a complex tick that causes him to grimace and breathe in loudly. Marco says: “I used to wonder, ‘Why me? Why did it have to be me?’ When I first got Tourette’s the noise was like a donkey cluck. My mum thought it was a bad habit and she kept saying, ‘Please can you stop that.’”
Marco’s mum Diana explains: “At that time I didn’t know it was Tourette’s syndrome and he never told me that it hurt him not to do the tics. I would say, ‘Look, we’re at the dinner time now, don’t make noises.’ And to think now that he would hold those in and he would be in pain.”
Diana admits: “My biggest fear is that the Tourette’s escalates into swearing. We live in fear of this happening, every day because that’s the way Tourettes is, from one day to the next, from one minute to the next, you don’t know if things could change for him.”
Marco is led out of school assembly by a teacher after becoming anxious, causing his tics to worsen. He says: “I’m very anxious and my tics have got bad so I’m gonna come back and do some origami…I feel like they’re thinking, ‘That’s annoying why doesn’t he stop?’ And I get embarrassed about that because I want to, but I can’t.”
Marco’s dad Ben says: “The main emotion for me would be anger. I’m angry because he has Tourette’s. I don’t want him to have Tourette’s. I know he doesn’t want to have Tourette’s. At the end of the day it’s a disability and no-one wants their child to be disabled.”
All three boys are about to join a pioneering Tourette’s treatment programme run at Britain’s leading children’s hospital – Great Ormond Street. Dr Tara Murphy, a clinical psychologist at the hospital explains: “We have a specialist National Tic Clinic. We also do some group therapies, the idea of which is improving acceptance and education around tics and encouraging the children to get to know each other and accept the condition.”
Callum is most bothered by his vocal tics, which have increased. His mum Maria says: “He’s quite a confident boy but this has knocked him down a bit, this vocal tic…He’s said to me how he doesn’t want to go out or be seen in public. It’s just absolutely awful.”
Dr Tara Murphy teaches the boys different techniques one-to-one on how to control the tics by suppressing them. They learn to recognise the thought or physical signal ahead of the tic, referred to as a tic signal, then to develop a competing response. In his first session Callum manages to suppress his vocal tic for four minutes, leaving his mum feeling like they have been given a magic wand, but with a long way to go and lots of practise to do at home.
Half of the children with Tourette’s also experience the condition Obsessive Compulsive Disorder. Marco explains: “I hate odd numbers except for the number five. I always check if the door is locked or not. I always close the windows.”
When Dr Tara Murphy visits Marco at home he admits he fears being robbed and she suggests therapies to treat his anxieties.
Connor continues to practise his tic suppression at home but seeing him struggle is difficult for mum Kristy to watch: “It’s horrendous seeing him go through it and it’s horrendous seeing him so exhausted at the end of it. I hate it. Absolutely hate putting him through it. But it’s supposed to be for good so hopefully it gets us somewhere.”
But as their treatment progresses, with support and encouragement the boys gradually show some improvements, to the overwhelming joy of their families.
Shocking, emotional and at times humorous, Kids With Tourette’s: In Their Own Words offers an astonishing insight into an often-misunderstood condition.