Call for understanding, forgiveness and tolerance from public around Tourette syndrome

A mum blogger hold concerns for her eight-year-old son’s future if the public doesn’t change their perception of a debilitating and incurable condition.

Imagine watching your child live through a condition they can’t control and many don’t understand or unfortunately tolerate.

For mum blogger Kate Wilson and her husband, watching their young son Archie experience what would later be known as tics and still fail to get answers was heartbreaking and frustrating.

Then after 12 months, Archie, now 8, was diagnosed with Tourette syndrome.

“It went from eye blinking to eye darting, shoulder shrugging … there were a lot of things we never realised were tics,” Mrs Wilson said.

Tourette syndrome is a condition of the nervous system that causes people to have tics, which can be sudden twitches, movements or sounds, that the person cannot control or stop.

“We knew what tics were or what Tourettes was from the movies, which was swearing and lots of jerking, but that's really not that common,” Mrs Wilson said.

“Its definitely daily. It probably has progressed since the diagnosis, and it will … but we’re more aware of it now.

“Before, he would do things we didn't know were tics, and we would tell him to stop that, which actually makes it worse.

“Now we can let it go, and it helps him to get it out and feel like he’s in a safe space.”

At 7 years of age, Archie Wilson, was diagnosed with Tourette syndrome, and now, the eight-year-old and his mum Kate are hoping more people can understand the uncontrollable and incurable condition. Picture: Morgan Burley

Last year, Mrs Wilson said Archie struggled to attend school, lasting only 15 minutes of the day.

Now, Mrs Wilson said her son has improved a lot and can last sometime half the school day, but it was thanks to a supportive school environment.

However, as Archie, who is also diagnosed with autism, grows older, he has become more self conscious of his condition.

“I think its very bad. I think I am different from other people,” he said.

While Archie enjoys school, drawing and being outside, Mrs Wilson said she is concerned how he will be when he gets to high school.

Archie Wilson, 8, lives with Tourette syndrome and loves to draw whatever comes to mind, and play outside on his trampoline, in his clubhouse or on the swings. Picture: Morgan Burley

“I worry about how the kids will treat him,” she said.

“Its about making sure he is going to be looked after and respected (in high school), because he should be respected and not kicked out of class for disrupting and doing something that is completely out of his control.”

Mrs Wilson hopes that society will start to accept and embrace those with tourettes, as they have started to with other conditions and “quirkiness that make us all special”.

“People with Tourettes aren’t naughty. They’re not doing it on purpose or for attention. They just need people to understand,” she said.

Described as a perfect and beautiful soul by mum Kate Wilson, Archie, 8, lives with Tourette syndrome, and has started going back to school and learning more each day. Picture: Morgan Burley

“From a parents point of view, we need people to be more understanding and forgiving because there’s so much judgment out there.

“Going places in public, Archie suffers from anxiety so its hard for him to go anyway, so when his emotions are higher, the tics get worse and it's a vicious cycle.

“It makes it harder for all of us when someone stops and stares, or you hear the comments under the breath. Its not nice and there’s absolutely nothing wrong with him.

“He’s a perfect and beautiful soul, and people need to be more understanding of what it is.”

Originally published as Call for understanding, forgiveness and tolerance from public around Tourette syndrome