Thirteen-year-old Remi Seminara has lived with both physical and verbal tics. He also has OCD, anxiety and depression, which add a whole new level of complexity to living with Tourette’s Syndrome.
For a six week period last year, he had what’s known as coprolalia – a symptom of Tourette’s that involves involuntary swearing and obscene language. Speaking to Mamamia, his mum Leesa said he would swear from the moment he woke up to the moment he went to sleep.
“We are not just talking voice level, we’re talking screaming. ‘F*** off, s***. F*** you, f***’. It would roll in patterns. He would pause for 10-20 seconds and then it would start again. The only thing that would give him relief was to play computer games, where he would get into a sort of trance. But the second he’d stop, the swearing would be even worse,” she explained.
WATCH: Living with Tourette’s. Post continues after video.
Remi has had kicking tics, violent head thrashing tics, throwing tics, tics where he’d hold his breath or close his eyes. Tics where he’d freeze – sometimes for up to an hour. Tics where he’d jump and then have to spin around. Others where he’d have to shrug his shoulders up and down. Tics that saw him have to punch his sister, or his mother – which would make him burst into tears.
The violent stomach tic was one of the worst. He’d pull his stomach in as far as it would go and then hyperextend it. He’d catch his breath, and then do it again.
“It was severe. He was vomiting, he couldn’t eat, he didn’t have quality of life. He was in constant pain,” Leesa told Mamamia.
Living with a child with Tourette’s Syndrome is exhausting not just for Remi, but for the whole family.
“People don’t get how hard it is to live with an unpredictable condition. You put your kid to bed at night and you have no idea what you’re in for the next morning,” said Leesa.
Every new tic can last hours, days, or weeks. It depends. Remi can have a really intense period where he might have six at the one time, then they’ll start to wain off, and he gets a bit of a break. They never completely go, they just subside for a little while.
In February, he had a two week tic that saw him unable to use his legs. He had to use a wheelchair everywhere he went. Tourette's is affected by emotion - and having just started at a new school (after a negative experience at his first choice of high school) Remi's anxiety and stress was at an all time high.
Just as he started to settle in to his new routine, coronavirus hit and Remi became terrified of contracting the deadly virus.
"The kids were pretend coughing and sneezing on each other and saying ‘you’ve got corona!’ and just being silly. But Remi is such a serious little boy, and these jokes really upset him,” Leesa said.
Since being in self-isolation, Remi has lived in a bubble, finding it hard to even leave the house to go for a bike ride with his dad.
This time, it's not his Tourette's that's debilitating. It's his OCD, which Leesa thinks has tripled during the last few weeks.
It's Tourette's Awareness Week this week (May 4-10), and with up to 85 per cent of people with Tourette's experiencing concurrent conditions such as OCD, ADHD, anxiety or depression, isolation has thrown up a plethora of new challenges.
For Remi, his experiences are also expected to worsen in the next few years thanks to puberty. Last year, he got so upset with his condition, he told his mother he didn't want to live anymore.
"Nobody likes me, I hate my life, I hate Tourette's," he told his mum.
"I didn't stop crying for five weeks straight," Leesa told Mamamia.
As the Seminaras, like lots of families, work out how they're going to support Remi's education, while managing the challenges of a global pandemic, Leesa wants to use Tourette's Awareness Week to remind the community that her son can't help his tics. It's a neurological disorder.
She's had parents mumble under their breath at her, or blatantly tell her she's a "bad mum".
As she tells Mamamia, "He's not naughty and he's not spiteful". There's nothing he can do about it. In fact, if people with Tourette's 'hold' their tics in, it only makes them worse when they eventually let them out again.
With 45,000 Australian kids living with the incurable disorder, Leesa wants the community to learn more about what families like hers are living with - instead of judging from the sidelines.
Feature image: Supplied.
To coincide with Tourette Syndrome Awareness Week (4th-10th May), the TSAA are promoting a Pandemic Panic Pack to support families and adults through this unprecedented time along with resources to generate understanding and educate Australians on how the pandemic is affecting those with TS.