A mum has shared what it’s like having three children, aged between eight and 25, who have Tourette syndrome, a condition involving uncontrollable repetitive movements or unwanted sounds.
Mandy Maysey said dealing with persistent judgement from onlookers and bullies tormenting her kids at school left her leaning on her support network and having a personal “pity party” up to three times a week just to cope.
The mother, from the Gold Coast in Queensland, told Sunday Project her daughter Isabel, eight, developed the condition first, followed by her 25-year-old brother Connor, and sister Jasmine, 12.
Jasmine’s symptoms only began around Easter this year, and first involved her yelling, “I’m a Hobbit”, “Bob Ross is my dad”, and “woof woof”.
Recently it developed into coprolalia, the involuntary and repetitive use of obscene language, a symptom most commonly associated with the nervous system disorder.
The 12-year-old also exhibits violent tics like slapping herself and her mum, while Connor said his condition has been growing in severity since he first developed it as a 21-year-old.
“I’ve been getting more physical, more motor tics so that I find it hard to actually do day-to-day activities. “I’ve been struggling to carry coffee cups and things now,” he told the program.
Ms Maysey, who works as a teacher’s aide at a special school, has grown all too familiar with how hostile and ignorant members of the public can be.
“I can understand that for some people it’s confronting to hear the language that comes out of my beautiful children’s mouths - it is horrific - but that’s just part of life. They can’t help it, they have no intent,” she said.
Growing a “thick skin” was not optional for the mum, for whom unwanted stares had "become the 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 said her children had chosen to see the humour in their conditions, and have joined in her mission reduce the hostility and ridicule often aimed at them because of it.
In August Bianca Saez, from the Sunshine Coast, who has one of the worst cases of Tourette’s in the world, spoke out saying she did not want a cure for the condition.
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