On Tourette Syndrome: Being your child’s first champion
Rachelle lives in a quiet leafy street in Melbourne’s suburbs, but she didn’t always live here. Several years ago, the family lived in busy cosmopolitan Hong Kong due to her husband’s work. She has two boys, now aged 14 and 15. Her eldest, Jake was diagnosed with Tourette Syndrome when he was around eight years old and they were living in Hong Kong.
Tourette syndrome (TS) is a neurological disorder characterised by repetitive, involuntary movements and vocalisations called “tics”. The disorder is named for Dr. Georges Gilles de la Tourette, a French neurologist who first described the condition on a patient in 1885.
Early symptoms of TS are usually noticed in childhood, generally before the age of nine or ten. Most people with the condition experience their worst tic symptoms in their early teens, however it has been found that improvement occurs in the late teens and adult hood.
“We were living in Hong Kong for my husband’s job at the time of Jake’s diagnosis,” recalled Rachelle, “Jake’s teacher called me in and told me that she felt some of Jake’s behaviours were showing that something was going on and she felt that it was out of his control and he was not displaying these behaviours to be naughty. She suggested we have a full psychological assessment done which we went on to do immediately.”
The assessment results did not list Tourette’s Syndrome at the time but stated he had ADHD, anxiety and OCD. After some recommendations on how to manage this at home and at school, they were then told to monitor how he was going. Soon after though, Jake began to display physical and vocal tics so Rachelle took him to see a paediatrician who specialises in behavioural conditions and he was diagnosed with Tourette Syndrome.
“The other conditions he was previously diagnosed with by the psychologist are conditions that are extremely common with a TS diagnosis and fall in the bracket of conditions a TS child can have,” explained Rachelle. “It took us a little time to come to terms with this diagnosis, however we were also relieved to know what was happening with our son.
“Being so far away from home we contacted medical experts in Melbourne to discuss this diagnosis and scheduled an appointment with a specialist at the children’s hospital for our next visit in Melbourne where his diagnosis was confirmed.”
The next challenge the family faced then, was explaining to their young son what his condition was and how it would affect him. Then began the process of explaining to the school, teachers, students and of course their own family and friends in Australia and in Hong Kong.
“This was all very confronting and not an easy thing to do; although once we had gone through this process, it actually lifted a weight off our shoulders and made things easier, as people understood that there was a reason for Jakes actions/tics and he wasn’t being judged.”
Once the family moved back to Melbourne, Rachelle had to put Jake back to school and despite initial trepidation, has found that the school has been outstanding in its compassion and understanding of Jake’s condition. They took it all on board, ensured that every student and teacher was aware of Jake’s condition so he would be treated like all other students and not be considered as being “naughty” if he tics.
Over the years Rachelle said that Jake has had a few bullying situations but that he has become a stronger and more resilient child because of it. “We as parents are extremely lucky, as Jake has taken his condition on board… I have learnt that being a mum of a child with Tourette’s or any condition really makes you a stronger person as you are your child’s advocate, and you need to be there every step of the way to help your child fit into situation.
“Whether it be at school, sports club, social situations, you need to always be present and explain your child’s condition to others to avoid bullying or judgment. Jake is very open to telling people he has TS especially if he is out and tics.” The biggest piece of advice Rachelle has for parents of children with Tourette’s is not to be scared. “Be open and tell people about their condition… as once people know your child has TS they will make the necessary allowances for your child which makes life easier for him/her.”
Article written by:
Janice Zheng is a Melbourne-based writer and editor. Born and raised in Singapore, she has also lived in Vietnam, China and Australia. She has written and edited across a variety of genres including hard news, feature articles, technical and specifications writing and press releases. Her coverage of a 2009 Australian oil spill disaster and its impact on the marine environment earned her a nomination to the Professional Online Writers Guild. In 2013, her family moved to China for her husband’s work. She joined the expatriate women’s volunteer-based society and wrote prolifically for its print publications and contributed to other expatriate magazines. Since her return to Australia, Janice has turned to writing and blogging about parenthood.