Cooper was diagnosed with Tourette Syndrome in February 2018. We began noticing his tics in April 2017 because he began jaw stretching and making a honking noise. We realised that he has had various tics since he was 5 such as whistling and clicking his fingers.
Cooper started year 2 and was referred to a paediatrician as his tics became far more prevalent, occurring on a daily basis at school and particularly at home after trying to suppress them in school. Cooper would suffer big explosions of tics including arm and leg movements, cheek puffing, humming, grunting and head jerks amongst numerous others. Unfortunately, whilst we were trying our best to support him at home, he was unlucky enough to have a teacher that was very unsupportive and had no understanding of Tourette Syndrome. This increased Cooper’s anxiety and stress which lead to even more tics. He became very sad and angry and began displaying signs of OCD. He had very low frustration levels and couldn’t cope with making a mistake at school. His self-esteem had plummeted. We decided to see a private neurologist as the NHS route was taking a long time. Cooper was referred to the Child Development Centre at Addenbrookes where he has seen a psychologist for coping strategies. He has also been through CHUMS to help him deal with the anxiety he was feeling last year. These have all had a positive impact in helping Cooper cope with his tics although he has suffered a tic attack in his swimming lesson which meant he missed school due to the pain and exhaustion he suffered after.
Christmas was difficult for Cooper with a lack of routine and seeing family he was unfamiliar with. Cooper experienced his first complex vocal tics during this time shouting out random words. Cooper’s tics wax and wane and he can develop new tics seemingly from nowhere as is the nature of Tourette Syndrome.
Cooper has been incredibly brave, explaining in a powerpoint presentation to his classmates what it feels like to have TS and the challenges he faces. We have also joined the local support group so Cooper can meet children and adults also living with Tourette’s.
As a family we talk openly about it in the hope that Cooper will grow up in an environment of tolerance and acceptance.