Ruben is now being home-schooled but he says it has left him missing friends and the school he loved – and all through something which was no fault of his own

A youngster has told how he had to quit the school he loved and leave behind his friends after getting into trouble for daydreaming in class. Ruben says he got detentions and sanctions, missing out on playtime and being unfairly treated.

Tragically the reason behind his “daydreaming” was far from bad behavior. For the 12-year-old has epilepsy which causes him to stare blankly for seconds at a time.

Now he is speaking out of his experiences to raise awareness of the condition which affects thousands of children in the UK – and often in different and individual ways. For Ruben it strikes in the form of “absence seizures”.

He said: “My teachers just didn’t get it. I got punished because they didn’t understand, which was hurtful, and I felt singled out. Some of my teachers would think that I was just daydreaming. I would get detentions and sanctions and stuff, and I’d miss out on play time. I just wasn’t treated as fairly as the other students.

“I am home-schooled now. I had to leave my school because they didn’t understand my epilepsy. I was disappointed because I had to leave all my friends behind, had to leave the whole school, which I loved, and it hurt me. I miss my friends.”

Ruben’s absence seizures present differently to what society expects an epileptic seizure to look like. He said: “I’ll be doing something and when I have a seizure, I stop whatever I’m doing. I will lose my train of thought and stare blankly for about 10 seconds, maybe five, depends.”

There are more than 100,000 children living with epilepsy in the UK, and national charity, Young Epilepsy, is working to raise awareness of the condition in children and young people as well as fundraising for vital support and research. There are over 40 different types of seizures and for many the condition can be frightening and isolating.

Common preconceptions and misunderstandings of what epilepsy is and how it can affect people, often lead to children and young people facing unnecessary barriers in their daily lives. To combat this the charity recently launched the #UnderstandMyEpilepsy campaign, calling for more understanding of each young person’s individual experience with epilepsy and how it impacts them specifically.

With the recovery and impact from any type of seizure varying for everyone it means without understanding each child’s individual epilepsy physically, emotionally, and mentally, many are being left without the right level of support, particularly in school. A recent survey by Young Epilepsy revealed that one in three children with epilepsy are let down by support in school.

Tools to combat this already exist, but, the charity warns, are not being used enough to tailor support to each individual. An Individual Healthcare Plan (IHP) should provide vital information about long-term conditions like epilepsy allowing schools and clubs to ensure each child is supported to achieve their full potential.

Last month schools and organizations joined together to mark Purple Day which is aimed at raising awareness and improving the lives of people with epilepsy. Young Epilepsy said it hoped the day would raise awareness of the challenges children and young people with epilepsy face in society, and the impact the condition has on their education, mental health, and future life chances.

 

Source: nottinghampost.com, Elaine Blackburne

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