Jasmine Maysey, 12, and her mum Mandy on The Sunday Project.
Jasmine Maysey, 12, and her mum Mandy on The Sunday Project.

‘All three of my kids have Tourette’s’

Around Easter this year, Jasmine Maysey began developing signs of Tourette syndrome - involuntary body movements and language known as tics.

The 12-year-old started with strange, random body movements before progressing to vocal tics, shouting abrupt comments like "woof woof", "Bob Ross is my dad" and "I'm a Hobbit".

Just in the past week, Jasmine has developed coprolalia, the involuntary outbursts of obscene language most commonly associated with the neurological disorder.

Both of Jasmine's siblings, 25-year-old brother Connor and eight-year-old sister Isabel, also have Tourette's and exhibit coprolalia. All three developed the disorder within the past five years - Isabel was diagnosed first, Connor shortly after.

"Three for three with Tourette's, three for with the swearing and everything - I really should do a lotto," their mum, Mandy Maysey, told The Sunday Project.

Tourette syndrome affects around one in 100 children. Research suggests kids under 21 are most commonly affected, with more boys than girls suffering from the condition. While symptoms are thought to lessen with age, Tourette's lasts a lifetime.

The exact cause still remains a mystery, but there is thought to be a genetic component. "Looking back, my father had sniffs and grunts … and it's only looking back knowing Tourette's behaviour now that I can see that he will have had Tourette's," Mandy said.

Isabel's tics consist of sniffs, blinks and grunts. Connor's symptoms first manifested when he was about 21 as a head nod and "escalated continuously from there". "I lived most of my life normal and then as an adult I've kinda had to navigate a whole new world and learn how to relive life," he said.

 

 

All three of Mandy Maysey’s children have developed Tourette’s.
All three of Mandy Maysey’s children have developed Tourette’s.

 

The girls involuntarily slap their mum.
The girls involuntarily slap their mum.

 

They also have obscene outbursts known as coprolalia.
They also have obscene outbursts known as coprolalia.

 

Connor has vocal tics, swears a lot and tends to kick and hit people. "I've been getting more physical, more motor tics so that I find it hard to actually do day-to-day activities," he said. "I've been struggling to carry coffee cups and things now."

Jasmine's Tourette's is also violent - she hurts herself by slapping herself in the face, and also hits her mum. "I hate it," she said, slapping her mum. "Every second of it."

Mandy, a teacher's aide who works with special needs students, said it could be tough going out in public sometimes. "You've really gotta get a thick skin," she said.

"I can understand that for some people it's confronting to hear the language that comes out of my beautiful children's mouths is horrific but that's just part of life. They can't help it, they have no intent."

Asked how she copes, she said, "I reserve myself a pity party two or three times a week if I need it I will have a cry. I will drive in my car or listen to a sad song I will bawl my eyes out, or I'll sit in the shower."

Mandy said her children prefer to see the funny side of their tics and refuse to let the judgement and bullying the kids receive affect them. "As a mum, I deal with it because of my support network," she said.

"I'm a teacher aide at a special school. It's become my norm - I deal with disabilities at school and then go home and deal with the same. No one's life is easy, you just have to deal with it. They have a fight on their hands every day just to be accepted."

She added, "The kids have taken it on, they want to raise awareness because they get bullied at school, they know others do as well. Other kids don't understand what Tourette's is. We need to get the word out."

Other children often mimic or leer at her kids - so now they tell people straight away that they have Tourette syndrome to take the wind out of their sails. They also have T-shirts they wear in public to forewarn people.

Mandy said once her children were diagnosed, she lost friends. But through the Tourette's Association, she found a support group. Every year the organisation holds an annual camp where families can relax together.

"That's why it's so important for them to meet other kids who are in their situation, great to connect with others," she said.

"And they can do it in a comfortable environment for them to just 'tic away' - a place where they don't have to suppress their Tourette's. They are free - no one is looking or making weird comments. They are our tribe."



Tips to survive a bushfire if you get trapped at your house

Tips to survive a bushfire if you get trapped at your house

If sheltering in place you need to follow these steps to survive

Community prepares for ember attack

Community prepares for ember attack

"The last three days have been flat out backburning"

Strike teams ready as bush fire risk escalates

Strike teams ready as bush fire risk escalates

"You don't want to be stuck when the winds get up today"