Mum’s plea for Tourette awareness
GROVEDALE mum Ruth Windsor is calling for more education and empathy for those, like her eight-year-old son, living with Tourette syndrome.
The nervous system disorder struck her then fouryear-old Matthew for the first time while enjoying a family day at the park.
The episode was so severe, loved ones thought he was having a fit and he was rushed to the emergency department.
Days later he was diagnosed with transient tic disorder and later, after the symptoms failed to subside, Tourette syndrome.
The condition involves repetitive movements or unwanted sounds, which for Matthew can mean clearing his throat, making a shriek, hiss, grunt or growl, a constant hand shake, throwing his head back, flicking, blinking, sniffing or rubbing this thumb and index finger until he bleeds.
As well as tics, the condition brings with it anxiety, rage issues and obsessive compulsive disorder.
His mother hopes Matthew will never develop the most commonly known Tourette’s tic, coprolalia — compulsive, uncontrollable swearing.
“When things are at their worst point, when he’s feeling pretty low, that’s when those questions come out that I don’t have answers for, like, ‘why me’, ‘what can we do to stop it’, ‘why am I hurting myself’,” she said.
“Come puberty it will go one of two ways, it will either quieten down or get worse.”
Ms Windsor’s life is a constant battle to crack her son’s code and find common themes between triggers so she can make mental notes to avoid them.
“It affects your life, it affects what you do. We haven’t gone to the Geelong Show for past three years because there is too much stimulation,” she said.
“We go to Waurn Ponds Shopping Centre and he starts ticking away but we go to Westfield and he seems to be fine.”
Matthew goes to Melbourne once a month to under go behavioural intervention where psychologists help him to identify the change of feeling in his body when a tic is coming on so he can assert an opposing movement to try and quieten it down.
Sometimes the physical and mental energy required to do this leaves him exhausted, other times the tics have him so wired that he is unable to sleep.
Tourette Syndrome Association Australia — which is running Tourette awareness week — provides information packs to schools with students who have Tourette syndrome and Matthew has been fortunate to have many of the same class mates since prep who know and accept him.
But still he has encountered bullying for being different.
“Any parent worries about their child, but this has increased my worries around acceptance and bullying because at tender age of eight we have already had that experience,” Ms Windsor said.
Her hope for the future is that the public, and the medical industry, will grow in their understanding of the condition so that those living with it can go on to lead full lives as accepted and valued members of the community.
For more information about TSAA awareness week visit tourette.org.au
“Come puberty it will go one of two ways, it will either quieten down or get worse.” RUTH WINDSOR