I recently got a message that intrigued, excited, and impressed me. It was from Mike, the father of a boy called Oliver. Mike shared a letter Oliver had written to the parents and carers of his schoolmates.
I thought it was brilliant and that other people might benefit from reading it too so I asked if Oliver would be happy to share it. He’s gone one step further and written a guest post about the letter and why he wrote it.
Over to you Oliver:
I wrote the letter to the parents of the children in my school so that whenever I go to class assemblies, or any other activity where parents are involved, they know I’m not being naughty in any kind of way.
It was also because some of the younger kids in school say that I’m being really naughty doing my tics all the time. But I can’t I help shouting swears, colours, dates and just screaming, or just squinting my eye, touching the middle part of a book, or anything like that. It makes me super-stressed and anxious, which makes it worse, which repeats the cycle.
It’s been over two years now since we discovered about my Tourettes, and it’s been very hard to cope. I feel as if I’m not accepted anywhere, and my friends only like me because… they feel bad for me. I know it’s not true, but the thought just bites back at me every once in a while.
The tics feel like a firework going off, it’s charging like a fuse then ‘POP!’ off it goes, and it’s hopeless to do anything about it. Sometimes it feels like my head is about to explode. If I hold a tic in, it just comes back louder and worse, and anyway most of the time I can’t manage to hold it in.
I hoped the letter would have cleared everything up, and so far it seems to be helping just that little bit. Everyone is coming to say that it was so brave writing that grown-up letter, but it just came into my mind.
Everyone in my class has been really supportive, and I can’t thank them enough. Sometimes there are bad days, but then there are good ones. It’s like a rollercoaster – you go up at one point, but the next minute you’re back down.
It’s also important to note some people don’t understand, and they will… get mad at you. But this is natural, so you just have to ignore them. This happened to me once, but I don’t like thinking back to it. Right now it’s hard just writing about my Tourettes and it makes me feel a bit sad inside, which is also perfectly natural.
Sometimes I just wish I could go back to 2012, where everything was normal. One year I only screamed about 10 times a week, and that felt amazing. But hey, let’s look on the bright side… I get to play lots of chess: my teacher lets me play it to help me “focus on something else.”
Thank you Oliver for sharing your letter and your experiences of Tourettes. I sometimes feel sad about my tics too and as you say it’s natural to have moments where things feel difficult.
Like Oliver I’ve also found that being open and explaining Tourettes to other people has made a positive difference. If you’re someone who’d find it hard to do this in person, or if you want to reach a lot of people, then maybe a letter could work for you too – it’s worth trying!
Hi Oliver! I think your blog and letter are fabulous, as is our wonderful Tourette’s hero! What you have both done to raise awareness and break down barriers, truly is amazing and although you may not agree, very courageous! I’m sure a very big majority of people are understanding and supportive of you after the way you have taken the mystery out of Tourette’s. People must surely be lucky in enjoying your unique personalities, tics and all! Keep up the good work and I’ll remember your advice to "pretend nothing happened" if I’m surprised by someone’s tic. Those who know you are lucky and privilidged to have you in their lives! Love Alison X