Getting along with Tourette’s
Living with Tourette Syndrome is a lot easier when you have good people around you who understand, says Alex Young.
It was something the Taranaki youngster found plenty of when he attended a special camp over the school holidays.
Alex and his mother Sian attended Camp Twitch, a fiveday getaway for Kiwi young people with Tourette Syndrome (TS), a genetic neurological disorder characterised by repetitive, stereotyped, involuntary movements and vocalisations called tics.
Alex (10) was about seven years old when his parents, John and Sian, first noticed he would sniff or clear his nose frequently.
“We would tell him to go blow his nose. It was frustrating, and he would say he didn’t need to.”
Sian says she and John feel bad now, but at the time, they thought he was being annoying on purpose.
“When he also started doing something different with his eyes, widening or stretching them regularly, we realised there was more to it than just an annoying habit.”
After doing some research, John and Sian thought Alex might have Tourette’s.
“Our research also told us that motor and vocal tics have to be present for at least 18 months before a diagnosis can be made, so we thought we would wait and see.”
That Christmas, Alex developed more tics.
“The excitement of Christmas day seemed to act as a catalyst. Suddenly he developed three more tics in one day. He had a whistle, a neck grimace and a purr sound as well as the original two tics.”
The tics were a mix of verbal (such as the whistle or purr) and motor-based such as the neck grimace, so Sian organised for Alex to see their family doctor early in the new year.
“Unfortunately, that wasn’t a great experience. The doctor told me it was a parenting issue, not normal tics, and lectured me on healthy eating, the need for physical activity. He suggested Alex have swimming lessons and that I take some parenting classes.”
With Alex being one of four children, Sian and John doubted parenting classes were going to be the answer, and instead sought a second opinion.
“We saw a second doctor that same week. He immediately referred Alex to the paediatrician who confirmed our thoughts and diagnosed him as having Tourette Syndrome.”
From that point on, says Sian, their journey has been a positive one.
“We were living in New Plymouth at the time, and Alex’s school was fantastic. The teacher went out of her way to learn everything she could about teaching children with TS. They worked with us to help Alex feel confident and relaxed about his tics.”
Moving to Inglewood this year and enrolling Alex at Inglewood Primary was also a positive experience, says Sian.
“I was worried about the potential for bullying, but the school staff, and children have been great.”
Alex says his friends accept his tics as just being part of who he is.
“They don’t really mention them or talk about it with me. I don’t really think about it much at school.”
Alex also participated in the school speeches, talking about his life with TS, and came third equal in the finals.
The family also joined the Tourette’s Association of New Zealand (TANZ) and Sian says they have received great support from the group.
This year, Alex and Sian attended Camp Twitch, an annual camp organised by TANZ, and both say the experience was brilliant. For Alex, food and swimming were highlights of the camp, along with the chance to meet others his age who also have Tourette’s, while for Sian it was the chance to share experiences with other parents and realising the future doesn’t have to be scary.
“Meeting some of the older children and young adults with Tourette’s was reassuring in a way, seeing how well they cope and can do anything that anyone else can.”
While the children were off doing activities, parents had the opportunity to learn from each other and share information, something Sian says she would like to happen in Taranaki in the future.
“TANZ and the TS online community has been great for us, and there are now some great regional support groups set up around the country, something Taranaki doesn’t have yet. I would love to hear from other people in the region who are living with Tourette’s or have a child with it so we can support each other.”
Having support makes a huge difference, says Sian. When Alex was first being diagnosed, Sian posted on Facebook looking for others in the area with Tourette’s but had no response.
Last week, returning from Camp Twitch, she tried again, hoping she could help others.
“I have already had a couple of people make contact, and I am sure there are others out there, who would benefit from a Taranaki based support group. Even if there isn’t an official diagnosis of Tourette’s but your child is showing signs, maybe just one or two tics, I would encourage people to make contact and talk to us so we can support you throughout your journey. You are definitely not alone.”
■ To talk to Sian or to help get a Taranaki Tourette’s support group set up, join the TANZ Facebook page to stay updated: www.facebook.com/ tourettesyndromenz