Boy who feels like the alien in the room: 10-year-old who once told shoppers ‘there’s a bomb in my bag’, bravely describes living with Tourette’s in this moving video
- Ryley Newman, from Maldon, Essex, was diagnosed aged 8 with the condition
- He regularly swears at strangers and often bangs his head on his school desk
- In a new video, Ryley said: ‘My Tourette’s is like an itch or a blink I am holding in’
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A 10-year-old boy has bravely described what it feels like to live with Tourette’s in a touching new video.
Ryley Newman, from Maldon, Essex, was diagnosed aged eight with the condition, characterised by a combination of involuntary noises and movements called tics.
He once told shoppers ‘there’s a bomb in my bag’ and accused a relative of cooking him ‘poo on a plate’.
Ryley Newman also swears at strangers, bangs his head on his school desk and, obsessed with football legend David Beckham, accuses the star of stealing his Jaffa Cakes.
But in a moving new video filmed by his mother, Ryley, who once said his condition can make him feel like an ‘alien’, said: ‘My Tourette’s is like an itch or a blink I am holding in.
Ryley Newman, from Maldon, Essex, was diagnosed aged eight with the condition, characterised by a combination of involuntary noises and movements called tics
‘I would love not to do it because the tics hurt me quite a lot and I hate having an impact on other people.’
Ryley added: ‘It’s fine and perfectly understandable for people to stare, but I wish it wasn’t for as long.’
His support worker mother, Tanita, 29, is determined for other people to understand his Tourette’s.
She said: ‘Ryley is kind and loving and doesn’t mean to upset anyone. He says his only wish is to change the impact his condition has on other people.
‘He wouldn’t give his Tourette’s up, as he says it is what makes him who he is – it’s his personality.
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‘But he feels like the alien in the room when everyone is staring at him and he wants people to understand him and his condition more.’
Ms Newman has since started a support group for Ryley – desperate to find friends for them both.
She has been accused of bad parenting because of her son, who sometimes yells insults such as ‘fat pig’ at random strangers in the street.
As a result, Ryley has ordered t-shirts, emblazoned with the slogan, ‘I have Tourette’s. If you think I’m puzzling, imagine what the world is like for me.’
Ryley, who is on a phased return to school, after being taken out four weeks ago, when his condition became unmanageable, simply wants to be understood.
His support worker mother, Tanita, 29, is determined for other people to understand his Tourette’s, which can make him feel like an ‘alien’
WHAT IS TOURETTE’S SYNDROME? NEUROLOGICAL CONDITION WITH NO CURE AFFECTS 1 IN 100 PEOPLE
Tourette’s syndrome is a neurological condition that is characterised by a combination of involuntary noises and movements called tics.
It usually starts during childhood and continues into adulthood. Tics can be either be vocal, such as swearing, or physical, such as headshaking.
Well-known cases today include former Everton goalkeeper Tim Howard and Big Brother 2006 winner Pete Bennett.
It is named after the French doctor, Georges Gilles de la Tourette, who first described the syndrome and its symptoms in the 19th century.
In many cases it is associated with obsessive compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD).
Well-known cases today include former Everton goalkeeper Tim Howard and Big Brother 2006 winner Pete Bennett
There’s no cure for Tourette’s syndrome, but treatment and therapy can help to control the symptoms.
Children and adults with Tourette’s syndrome may experience associated problems, such as social isolation, embarrassment and low self-esteem.
The cause of Tourette’s syndrome is unknown. However, it’s thought to be linked to problems with a part of the brain known as the basal ganglia, which helps regulate body movements.
Tourette’s syndrome is more common than most people realise. It affects around one in every 100 people, according to the NHS.
The symptoms of Tourette’s syndrome usually begin at around seven years of age and become most pronounced at 10–11 years.
For unknown reasons, boys are more likely to be affected by Tourette’s syndrome than girls.
Source: NHS Choices
Ryley once told shoppers ‘there’s a bomb in my bag’ and accused a relative of cooking him ‘poo on a plate’ (pictured wearing his Tourette’s t-shirt)
Ryley, who is on a phased return to school, after being taken out four weeks ago, simply wants to be understood (pictured with his father, Gary)
A well-behaved boy, who excelled at school and never swore, Ryley’s behaviour started changing three years ago.
He began grimacing and pulling faces at school and teachers noticed symptoms common in ADHD – which makes it difficult to pay attention – such as struggling to sit still.
As the year progressed, his behaviour deteriorated, with Ryley – who was being told off more and more by teachers – having sound tics, making roaring noises and throwing his head backwards, uncontrollably.
Referred, on the school’s advice, to a paediatrician at South Woodham Ferrers Clinic in 2016, then aged eight, following an assessment, he was diagnosed with Tourette’s.
Ms Newman, whose daughters, Indie, five, and Ivy, four, do not have the condition, said: ‘I thought Tourette’s was something where someone swore all the time, but the doctor told us swearing is actually really rare, only affecting about one in 10 people.
‘She said it was common for Tourette’s to start during childhood and while there’s no cure, the tics and other symptoms usually improve and sometimes go away completely.’
But the diagnosis came as a massive blow to Ms Newman and her children’s father, Gary Newman, 35, who she split up with last year but remains on good terms with.
They both feared what the future would hold for their son. She said: ‘I was shocked and couldn’t help worrying how his life was going to be.
A well-behaved boy, who excelled at school and never swore, Ryley’s behaviour began to change three years ago (pictured with his father Gary and two sisters: five-year-old Indie, top, and four-year-old Ivy, bottom)
While some of his random claims were so peculiar they were funny, earlier this year, Ryley’s tics became more offensive (pictured with his mother)
‘I really struggled for a while with getting my head around the idea that his future was going to be completely different to the one I’d imagined for him.’
Given cognitive behavioural therapy (CBT) – a type of counselling – to help him cope with the disorder, Ms Newman also worked with Ryley’s school, putting measures in place to support him.
But, as the months passed, Ryley’s tics became worse.
She said: ‘A year ago he started to make bigger movements with his arms, just suddenly shaking them around his head, like a windmill.
‘This was when people really started to stare at him for the first time.
‘What got to him the most was his classmates at school looking at him, so he wrote down how he felt and asked to read it out at assembly.’
In a moving speech, Ryley told his friends he understood that they wanted to look at him when he had tics, but asked them not to stare for such long periods.
Ms Newman added: ‘He said he hates people staring for so long and it really upsets him. He came home distraught and desperate for people to understand him better.’
Sadly, within weeks of him making his courageous plea, Ryley’s condition became worse and he started blurting out strange phrases at random.
After wearing ex-England star David Beckham’s aftershave, the former footballer’s name seemed to have stuck in his brain.
Ms Newman said: ‘Out of the blue, he started saying things like, “David Beckham stole my Jaffa Cakes,” “David Beckham stole my BMW X5” and “David Beckham stole my sauce”.
‘He also said things like, “I used to be Mary Poppins, but I aged quite a bit”.’
While some of his random claims were so peculiar they were funny, earlier this year, Ryley’s tics became more offensive.
Ms Newman recalled: ‘He shouted, “Nanny’s a grumpy old woman” at his nan, Tina.
Ms Newman added: ‘He hated swearing before he developed Tourette’s, so when he started saying the expletives he hated it’
‘Afterwards he was so upset, as he loves his nan to bits and did not mean what he said, it just came out.’
Continued offensive outbursts saw him shouting ‘fat pig’ and ‘diabetes’ arbitrarily at people in the street, also calling the ice cream woman a ‘b****’ and claiming he had a bomb.
Ms Newman said: ‘People would stare and looked shocked.
‘I’m sorry if they were offended, but my priority was to make sure Ryley was okay and not too upset afterwards.
‘Of course, though, I’d tell people he has Tourette’s and didn’t mean what he said.’
Things became even worse last month when Ryley started swearing at school, in the street and in restaurants.
Ms Newman added: ‘He hated swearing before he developed Tourette’s, so when he started saying the expletives he hated it.
‘People would ‘”tut” at us when we were out and about and a family even left a McDonald’s, because of Ryley’s outbursts, shaking their heads at him.
‘We now call ahead and warn the staff he might swear uncontrollably and ask them if there is a quieter area where we can sit all together.’
As well as drawing disapproval from adults, Ryley’s outbursts lead to him being teased by other children.
Ms Newman added: ‘It’s other people who need to understand Ryley. They think it’s my bad parenting or him being naughty, but he can’t help it and I have always told him it’s not polite to swear.’
Now, determined to educate people, Ryley has begun to wear his special Tourette’s T-shirt and last month Ms Newman started a Facebook group called, ‘Find Ryley some Ticking good friends (Tourette’s support group)’ to find other people with the condition for him to speak to.
She said: ‘He says he would love to speak to someone else who has Tourette’s and it would be really helpful for me to have other parents to talk to, as his condition means it can be lonely for both of us.’
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