Changing perceptions of Tourette’s syndrome

Ben Pryor, from Liversedge who suffers from severe Tourette's syndrome, with his mum Susan.
Ben Pryor, from Liversedge who suffers from severe Tourette's syndrome, with his mum Susan.

When people talk about Tourette’s the first thing that often comes to mind is shouting and swearing, but the mother of a little boy who suffers from the condition wants to turn that around.

Susan Pryor has had to fight for her son, Ben, to get into the right school and fight for his condition to be taken into consideration.

Now she is fighting to raise money for Tourette’s research and support.

The struggle that Ben, 11, has faced in trying to suppress his symptoms has sometimes overwhelmed him and made it difficult for him to get involved with the things that other children take for granted.

Susan said: “People think Tourette’s is just a lot of telling people to ‘F off’, but it isn’t.

“It’s to do with involuntary movements. A lot people instantly presume it means screaming, but that’s only a small percentage.

“It is heartbreaking – there is nothing worse than seeing your child hit himself because he can’t stop his tics.

“He has had to give up after school activities. Sometimes when he comes home he goes into a major meltdown. It is devastating to see.

“He used to go to dancing school but stopped because he felt embarrassed. None of the girls said anything to him, but he just didn’t want people to see him that way.”

Susan, of Leeds Road, Liversedge, moved to Australia with Ben when he was five and returned to Britain a few years later.

But she had trouble getting Ben, who also has autism traits and obsessive compulsive disorder, into an appropriate school.

Some of the more challenging and sometimes violent behaviour caused by his complicated mix of conditions meant that a mainstream education was difficult.

Of course, his mum understood and loved him just the same but it became clear that neither Ben nor Susan were happy with the way things were going.

“I think he felt isolated in a mainstream school, we knew he should not be there,” she said.

But Ben found a world he felt more comfortable in during this academic year when he moved to Ravenshall School.

The school in Thornhill Lees, Dewsbury, caters for children with special educational needs.

Susan said: “The first day at Ravenshall School he said to me ‘mum, I belong here’.”

Speaking about Ben’s experience of joining the school, Ravenshall headteacher Jeanette Tate said: “That is absolutely fabulous!

“I don’t want to sound twee but our motto is ‘all equal, all different, all important’. It might sound mushy as hell but that’s how it is.

“Our staff are hugely experienced. The teachers who teach Ben all know him inside out and he is able to succeed in a much more specialist environment.

“He can be a challenging pupil but he’s a bright kid.”

Susan will find out in the next couple of years whether Ben’s condition will settle or worsen as he enters a crucial point in his development.

She said: “Between the ages of 10-12 it shows itself most aggressively.

“At 12-13 we will find whether it will stay at a mild setting or whether it will get worse.

“We won’t know until the end of next year and that is quite scary. Will it calm down or will it get worse and worse?”

In the meantime, she has arranged a three-course meal to raise awareness of the condition and money for charity Tourette’s Action.

It works in England, Wales and Northern Ireland and is the leading support and research charity for people with Tourette’s Syndrome and their families.

The fundraiser, on Saturday June 13, will be held at the Lakeside Restaurant, just within the gates of Ponderosa in Heckmondwike. It will include a raffle, auction and entertainment.

Tickets for the dinner are £30. Email susan.pryor41@gmail.com with any ticket inquiries or to make donations of cash or raffle prizes.