The Reason It Is What It Is…

I kind of touched briefly in my intro about the reasons sometimes why I act as I do. My brother is 22 he’s got autism, severe learning difficulties, and epilepsy and he’s non-verbal. Growing up in our house has been hard and from an early age, I knew that sometimes I’d have to sacrifice myself to protect him. I also knew that I could use him as an excuse from time to time as to why I just didn’t want to exist socially.
Ben’s my big bro he’s 6ft 4 and 17 stone he loves tickles, has a huge smile, is cheeky when he steals my Pepsi max cans and food and plays Belinda Carlisle “circle in the sand” continually on repeat for hours (but only maybe 1 verse)

He can also be challenging and aggressive to the point of hitting us all, pinching us pushing us downstairs and screaming right up to our faces.. sometimes it’s really scary… I mean really scary like to the point you think shit I need to run. Not many people have been into our world for long because trust is a big thing… at school so-called friends would call him a freak or a weirdo and their parents wouldn’t let them come over to my house because they thought he was dangerous. That hurts me so much because I just want to protect him, he’s vulnerable and it’s not his fault why he does the things he does. My mum and dad have hardly had any help with him over the years but they have always protected and loved us all equally a lot of the time at the expense of their own sanity. Dad will never be able to take him out for a pint to the pub or go the footie with him and mum will never see her boy married with a family of his own, their life’s maybe have not turned out the way they expected but they never complained they always as my mum says “smiled and waved”.

When Ben got diagnosed with Epilepsy life changed again because his seizures can be so unpredictable, he’s been in the hospital so many times with them and relies on rescue medication. It’s also really sad to think that sometimes some people’s negligence has caused him to be ill. He can’t tell anyone when he’s not feeling well, he can’t tell anyone if something is wrong and that’s scary beyond words.
But with helping to care for him has come opportunities for me, it’s helped me to decide where my career lies, to have more patience and empathy that is possible to know and it’s taught me to love unconditionally.

I’ve been a Young carers champion both locally and nationally and I’ve had my ugly mug featured in a national exhibition called “hidden” focusing on the lives of young carers, I was even on Granada Reports talking about my life. 

I’ve got lots to thank my Ben for I wouldn’t change him for the world .. well may be just a little less of Belinda Carlisle would be nice 🤣

~Some people with autism may not be able to speak or answer to their name but they can still hear your words and feel your kindness~

Em xo

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