A 12-year-old boy from Skegness who uses magic as an escape from his Tourette Syndrome has, along with his mum, called for action and support from government after discovering that there is no medical pathway to sufficiently treat his condition.
Currently, no provisions are in place for Tourettes in Lincolnshire, and there are very limited services available at all in the United Kingdom.
One in 100 children have Tourettes, a similar prevalence to that of autism in this country, and Natasha Shaw from Skegness, who has a 12-year-old son called Thomas with the condition, feels care, treatment and support shouldn’t be this hard to get.
Her son Thomas, 12, has coprolalia, which is commonly known as the swearing tic. He often has to work hard to suppress his tics and hold back from cursing or shouting.
This is something that is out of Thomas’ control, but he hates doing it as he is someone who loathes the idea of breaking rules.
The Lincolnite went to visit Natasha and Thomas to speak about his condition, as well as the lack of support that is available for people with Tourettes in Lincolnshire, and the difficult journey Thomas has been on in the quest for treatment and answers.
Thomas is an incredibly polite child who has the strongest imaginable bond with his mother, but there are occasions where he loses control of himself and snaps into an act of violence or verbal aggression.
“It’s like there’s another person inside me who I can’t control,” Thomas explains, “in that moment I go a bit insane and then instantly regret it.”
Thomas described his condition as “similar to shaking up a Coke bottle; eventually it fizzes up and something has to give.”
He developed tics from a young age, and Natasha sensed that it may be a condition that needed treatment, so she sought advice from CAMHS (Child and Adolescent Mental Health Services).
Natasha was told that the service can’t treat for Tourettes, and there was nobody in Lincolnshire who could offer the relevant guidance, so she was referred to Sheffield.
It was there where Thomas was diagnosed with coprolalia, but no form of treatment or advice was given, to which Natasha said: “We’ve just had to learn to manage.”
According to Natasha, there are currently just three places in the whole country that can sufficiently offer support and help for Tourettes among children, none of which are in Lincolnshire, which leaves Thomas in a difficult situation.
Natasha continued: “He’s constantly in pain, he works so hard to suppress any ongoing tics but they become overwhelming. He can’t walk to school alone because he has a freezing tic, leaving him vulnerable in case that is triggered at any time.
“We’ve had to install a camera in his bedroom because some of his tics can have majorly detrimental impacts on his mental health, it makes us so worried every day.
“I feel like a referee most days when trying to look after him, but I’ve always said children with Tourettes are like snowflakes, all beautiful and different in their own unique way.”
Thomas is about to go into year eight at Skegness Academy, where his dad is a science teacher, and he said he’s “never missed a mark” during lessons, despite the occasional instance of being picked on by some of the older pupils.
He loves learning about physics among other subjects, and in terms of hobbies he enjoys building with Lego, playing non-violence games on his Xbox and, most of all, doing magic tricks.
“Magic is my escape, it calms my mind when I struggle with the tics. I got to cut the ribbon at Smyths Toys in Lincoln and was given a voucher, so I bought my first magic kit from there.”
Thomas wowed me with his sleight of hand and magician tricks, that he collects in his large “tricks with tics” box, and he said he loves to make people smile when doing magic.
I asked Thomas how he feels about the lack of support available for people with his condition, and what he thinks needs to be done about it, and the answer was simple.
“Education,” he said. “More people need to understand how difficult it is to live with Tourettes, it eats me alive every day. It’s just something I was born with and have no control over.”
A petition has been launched, calling on government to increase funding in the health sector to provide support and research into Tourettes syndrome, and at the time of reporting that stands at over 55,000 signatures.
A petition needs 100,000 signatures to be officially heard in Parliament, and this one has a deadline of August 16 before it expires.