Carol's teenage son Josh was diagnosed with Tourette syndrome (TS) when he was seven years old. She tells her story about coping with TS.
We started becoming aware that there might be a problem when Josh was six years old. I noticed he wasn't learning as quickly as the other children at primary school and he was having trouble retaining information.
Then there was the eye-blinking and twitching, which eventually developed into a shoulder shrug. After that he started losing control of his arms and leg. We soon realised that the tics weren't simply a twitch, and that his slow progress at school wasn't, as the teachers referred to it, down to laziness.
Sifting the information
We went to our GP who referred us to a paediatrician – the waiting list was so long we ended up going privately.
We also found an educational psychologist independently because the school wouldn't assist us. She spent four hours with him and gave us a very detailed report. She was the first person to mention Tourette syndrome (TS) – we hadn't heard of the condition so she downloaded lots of information for us to take away.
As we sifted through the information, suddenly everything made sense – we were reading about Josh. It also dawned on us that the ‘Bale family twitch' wasn't simply a twitch and that there was obviously a history of TS in the family.
When the diagnosis came it was such a relief to finally get some answers. In some ways I felt guilty because there are families out there who might not be able to find that professional help, after all we had gone privately. I decided I wanted to help other families.
I started going to a support group in Salisbury organised by the Tourette Syndrome Association (TSA). I wanted Josh to meet other families and children and show him he wasn't the only person with Tourette syndrome. After two years we were encouraged to set up our own group closer to home, which we did.
Knowing that there are other families out there is a key factor to coping. With TS no two days are the same and it really helps if you can ring up someone who understands the condition.
Josh sometimes thinks he's going mad because he can't control himself but then he sees the same sort of symptoms in other people. Taking him to a TSA conference also helped to show him that there are adults with Tourette syndrome who have succeeded in life.
After the diagnosis we decided to move to a village because we felt a small school would be much better for Josh. There were only 80 people in the whole school, as opposed to about 500 in the last. Josh was able to get the bus and he loved it – the people were very caring and supportive.
Secondary school was a huge change for Josh and his tics got very bad. He was lost in a bigger school; he couldn't get to grips with moving from class to class and all of the different subjects and teachers.
Eventually we took him out of mainstream school but, even though he is in a smaller school now, he only attends classes off and on. He feels the tics interrupt his thought processes. He gets the answer in his head but something comes along and chops it up – and he has to search for it again.
Initially medication helped us to keep a lid on the symptoms and he was able to do things to his best ability. We've tried about seven or eight different medicines over the years but they tend to become ineffective after a while; the longest period one has worked for is just two years.
Coping with Tourette syndrome
No two days are the same with Josh's tics. One day he might be vocal – he has coprolalia (repetitive swearing) – and another time he might get aggressive and confrontational, especially to his family. He never travels on public transport and he never goes anywhere on his own for fear of someone saying something to him. He constantly worries about saying inappropriate things in the wrong place and is scared of how people might react – that they might even hit him or knife him. But he can't stop himself – he wishes that people understood him more.
The teenage years are proving the hardest – with a younger child you have more control. Josh is much taller and stronger than me and, now he's a teenager, much more wilful, which makes it difficult.
At home he gets very angry that we don't have it and that we can't understand. When he's out with his friends he calms down a bit but as soon as he returns home he gets angry again.
His only relief from the tics is riding his mountain bike.
When it comes to the tics, you have to develop a thick skin. When Josh was younger we would sit on the bus and he would make loud comments about the other people, like ‘why has that man got a big nose?' It was embarrassing – my husband found it particularly hard to handle. But my attitude is that if Josh has to learn to live with people staring at him, so do we. We need to be strong for him and show him that we can cope with it. We were lucky that nobody ever confronted us. Although they definitely gave us looks.
Josh's TS has affected the whole family, not just the immediate family because they get upset when they see him. At one point CAMS organised some family therapy, which really helped at the time.
As a parent, I desperately want to take Tourette's away from him, or even have it instead of Josh. All we can do is try to understand and find the right services for him.