Ben Lynch-Wilson was diagnosed with Tourette’s syndrome when he was just five. The tics it causes have resulted in him hitting himself so hard he's needed to go to A&E.
The schoolboy is now aged 10 and in his last year of primary school preparing to go to high school next term. During his school days, other children at school have sometimes made fun of Ben so he decided to write a letter to his classmates explaining what Tourette’s is and how it makes him feel.
When Ben’s teacher at St Iltyd’s Primary in Llantwit Major, Vale of Glamorgan, finished reading the letter to his year six class all the children clapped. Ben said no one has made fun of him since.
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In his letter Ben explained what Tourette's is and how it affects him. He explained to his class how his tics can slow his learning at times and how he's not good at team sports: "Imagine needing to blink, but you are trying your best not to, eventually you have to. whether this be within seconds or a minute or so, this is a similar experience with the tics for me, but over and over again."
And he goes on to say that he doesn't like being made fun of and asks his classmates to be kind: "I find it hard to 'take a joke' as I don’t see the world the same way you do maybe but what makes that more difficult is when I am picked on or called names, because 'I just don’t get it'. What you find funny I might not and what you understand I might not. This can be normal for everyone, it doesn’t make me stupid or weird, it just means I don’t find it funny."
Ben admits he can be mean and angry too sometimes but told his class he wanted them to know why he is the way he is and how the world is different for him. His mum Stephanie helped him write the letter but said it was Ben’s idea because he wanted his classmates to understand what made him different sometimes.
“We sat down together and wrote it. He was going to read it out but on the day he was too nervous so his teacher Mr Isaac read it out,” said Stephanie.
“When he finished all the children clapped and where he used to get picked on he hasn’t had a problem since. Not once.”
Ben, who is nearly 11, said he feels “really happy” now: “When everyone claps you feel they are more on your side. I don’t think they understood what Tourette’s is and a few people used to call me “weirdo” and I didn’t like it. They don’t call me that now. We said what it was and my different tics. I blink repeatedly and roll my eyes a lot and have a sniffing tic and squeak like a mouse sometimes. I was nervous before it was read out but I’m glad I did it now.”
Ben's teacher Mark Isaac praised him for bringing in the "really personal" letter: " I was very pleased when Ben brought his piece of writing into school. The way he expressed his feelings about his Tourette's was really personal and emotive.
"The applause from his classmates was very touching and made everyone feel so positive. All the children in our school are very supportive of their friends with additional needs and along with our staff make our school a safe and inclusive place to learn and teach so everyone can achieve their best."
After the letter was read out some children in Ben's class wrote him a note telling him "you're amazing" with messages of support.
Stephanie said there’s not really any help for children like Ben with Tourette’s and it affects the whole family. The schoolboy doesn’t have a statement of special educational needs or any one to one help. He does well with his schoolwork which can mask what he’s going through.
“Sometimes he can’t sleep because of his tics. He’ll be sitting on the sofa and his tics are going all the time, he never 100% relaxes,” said his mum.
“He loves school and isn’t behind academically. But as you get older if you don’t fit in you can be an outsider. Ben just wanted his class to know more about his Tourette’s. The school has been very supportive.” You can see more stories like this by signing up for our daily newsletter here.
Ben’s tics “go up and down” and can put him at risk Stephanie said: “Last year we had to go to accident and emergency twice because he had such violent tics he was punching himself in the stomach. Sometimes he wasn’t sleeping because he was hitting himself.
“No one actually helps you. We were referred to the Child and Adolescent Mental Health Service (CAMHS) but that’s mental health and this is a neurological disorder that can affect mental health. It does leave you feeling awful. Some days it really affects him more than others.”
Stephanie and her husband Rob first noticed something was wrong when Ben developed tics after they moved house in 2016. They took him to the GP and he was diagnosed with Tourette’s.
Ben's letter to his class:
"Tourette Syndrome is a neurological condition. This means that it is a 'brain condition' which cannot be seen, unless I am having involuntary movements. These movements are called tics, they can have many different effects on a person, and each person with Tourette Syndrome may present differently.
"Tics can prevent me learning at the same speed as someone else of the same age, due to what the tics are. My Tics vary and sometimes I don’t have any.
"Some of my most common tics are an eye roll, repetitive blinking or closing my eyes tight for a few seconds at a time. So, if I am reading, sometimes, I have to re-read, over and over again, as I can lose my place quite easily and I can struggle to take in what I have read, as the tics interrupt me. This is because I am trying to concentrate on not ticking but this can be really difficult.
"I also struggle sleeping as my tics keep me awake, they can be so annoying even for me. I have been told before, the way to describe a tic could be as simple as this, imagine needing to blink, but you are trying your best not to, eventually you have to. whether this be within seconds or a minute or so, this is a similar experience with the tics for me, but over and over again.
"I also have a tic where I make a squeaking noise, and this bothers me more than the eyes, as you can hear it and you might just think I am being annoying, but I promise you I am not. "I ended up at the hospital a few times last summer because I kept punching myself over and over, and I would also stop dead when walking and start stamping the ground or punching the walls. My mum got really worried in case I hurt myself as this happened when crossing the road also, which could have made me get run over. I could have also injured myself quite badly but punching objects that really shouldn’t be punched.
"When I don’t have tics, Tourette Syndrome can show in other ways, for example I get really, really angry and frustrated. I shout at everyone, and I can be really mean, I don’t mean what I say but I just have no control. There is another part of Tourette syndrome, which thankfully, I don’t have. This is called 'copralia'. This is what everyone thinks that Tourette Syndrome is, which it isn't. It is swearing repeatedly or shouting out obscene words. There is also another one called 'echolalia' which is when you repeat what others are saying - I do get this quote a lot, my mum says it's like having a parrot. We always try and laugh about my Tourette's, as there are some people in a worse position than me, with other conditions, but sometimes it can be really hard.
"I try really hard when I am at school as I don’t want to get into any trouble, but when I get home, I take it all out on my family, and it is usually my little brother I upset the most, because he doesn’t really understand. My Mum, Dad and Gramp used to get upset too, they still do sometimes, but they understand why I am being that way, and we make space between us. I will often get sent to my room to calm down, which really helps. Or if I am shouting at my mum, she will tell me 'We are no longer having this conversation' and she will walk away. She has a way of ignoring me even when I am mean to her.
"I find it hard to 'take a joke' as I don’t see the world the same way you do maybe. But what makes that more difficult is when I am picked on or called names, because 'I just don’t get it'. What you find funny I might not and what you understand I might not. This can be normal for everyone, it doesn’t make me stupid or weird, it
just means I don’t find it funny.
"My world is different to yours, and so is my brain, but do you know what? I really like it. And to me that is what matters. There is not a cure for Tourette's and currently no help from the doctors we just have to manage it the best we can. To be honest, I don’t want a cure as I like having it. It makes me different to you, and it is good to be different, if we were all the same wouldn’t life be boring?
"I am not good at team sports, but I like to join in and try, but I am good at gaming, you might not be, but do you still try? Do you like it when someone says 'oh you are so rubbish' no matter what you say I bet you don’t, and this is how I feel. I do not need a cure, I do not want one.
"But what I would like...... or even love! Is acceptance. I am me, I am Ben, I cannot change what I have, like you can dye your hair or choose your clothes, and I do not want to. We say at home “You might not like me, but I do, and if you don’t like that’s not my problem, that’s yours. I am not Tourette Syndrome, I am a 10-year-old who has had this since at least 2016, that’s six years, and in six years it has been hard, and it may get harder, but I have learnt things and experienced things that you may never get to do. That makes me Lucky.
"May 15th-June 15th is Tourette’s Awareness Month. This is why I thought it would be good to share this with you as with Tourette Syndrome sometimes we have bad days which can affect our thoughts and feelings, which can affect our mental health.
"So, before you judge someone, just think to yourself, can they help what they are doing and if you are not sure just ask. We would rather you asked us than just assumed we were being annoying and then tell us to be quiet or shut up, as this can
make us sad and angry at the same time.
"I can be mean to people quite a lot, but only when I have had enough of people picking on me, or being mean, and then I get so angry I cannot help it. Just be kind, and if you cannot be kind say nothing. You never know how the person you are being mean to feels when they go home, and you never know, one day you might be like them.
"Tourette Syndrome is a disability, but instead of it being physical it is neurological. It does stop me doing some things as I get extremely nervous or worried, but I don’t think of it as a disability, I think of it as a different ability, and if everyone thought the same about disabilities, adults too, I think everyone would be happier."
Tourette's Syndrome explained
The NHS website says: “Tourette’s syndrome is a condition that causes a person to make involuntary sounds and movements called tics. It usually starts during childhood, but the tics and other symptoms usually improve after several years and sometimes go away completely.”
