Feature

How a young family learns to live with Tourette Syndrome

The documentary 'My F-ing Tourette's Family' shows the everyday challenges of raising two kids with neurological conditions.

Richard, Haley, Lewis and Spencer Davies-Monks from My F-ing Tourette’s Family

The Davies-Monks family from documentary 'My F-ing Tourette’s Family' Source: SBS

Thirteen-year-old Spencer and nine-year-old Lewis are your average kids: they love going for pizza dinners, playing video games, and going on family holidays. Except there’s one thing that makes living a 'regular' life somewhat challenging: they're both growing up with Tourette's Syndrome.

However, their mum and dad are determined to make sure they don't live their lives in hiding. They plan a six-month initiative to gradually immerse them in the ups-and-downs of everyday life: confronting fears, facing judgement, and ultimately, finding their true voices and telling their stories.

‘Suppressing it is like trying to cough,’ says Spencer, describing the stress of holding back his tics in public. ‘You’ve got the tickle in the back of your throat. You’re trying your best not to cough.’ One particularly poignant moment comes up when Lewis admits how scared he is that the unwelcome guest in his throat – the Tourette's – might cause him to say something potentially racist, sexist, or homophobic. 'I don’t want anyone to feel like' – a swear word erupts from his mouth, which he quickly corrects – 'their feelings [get] hurt.'

One of the silver linings in My F-ing Tourette’s Family is being able to witness how much both of the boys' confidence grows alongside that of their parents. As they slowly make their way from takeaway dinners at home to pub meals outdoors, Spencer gives his first public talk to a group of students after rehearsing in front of his family and the family embarks on its first European holiday together, Lewis and Spencer's parents have the opportunity to become as brave as their children do.

As their dad says, reflecting on the highs and lows of the six-month experiment: ‘Having Tourette’s in our life is our normal, isn’t it?’

 

My F-ing Tourette's Family is streaming at SBS on Demand:




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Published 1 November 2018 10:44am
By SBS Guide
Source: SBS

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