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A Sibling Story

 

My brother, Robert, is 14 years old. He has autism, a severe learning disability, challenging behaviours and is non-verbal. He lives at home with my mum, my dad and my other brother, Matthew. 

Being the sibling of someone who has a severe learning disability and behaviour that challenges is very different from other sibling relationships. It requires extra responsibility and a lot of forward thinking. We are constantly monitoring risks and trying to reduce the opportunities Robert might have to run off, steal a stranger’s food or cause some sort of destruction! It also requires a lot more patience and understanding – especially when Robert decides to hit, shove or kick you. Sometimes I worry about my parents just as much as I do Robert. I was 12 when Robert was diagnosed and I can remember the impact it had on my mum and dad. However, seeing the great job they do has also given me the utmost respect for them, and other family carers too.

While typical siblings may have more independent lives as they grow up, Robert will be likely to need me and Matthew more and more. One day in the future it will be our sole responsibility to advocate for Robert and make sure he is cared for and protected. It’s sometimes not recognised that siblings are usually the ones who will know their brother/sister, and have a caring role for them, longer than any other family members. 

Despite the challenges, Robert’s disabilities and behaviours don’t define him. He’s got a cheeky smile and sense of humour, and can be really affectionate. There are lots of benefits of being his big sister and I always feel proud seeing him do things he enjoys, or watching him attempt to use new skills – even if it’s as little as using cutlery to eat with.

My own experiences influenced why I wanted to do an internship with the CBF, and the charity is starting to make plans about what support we could offer siblings in the future. I’m looking forward to contributing to something so close to my heart, and helping to support other siblings.

Eleanor, Robert's sister

 

If you are the sibling of somebody with severe learning disabilities and would like to contribute towards the development of the CBF’s forthcoming support for siblings, please email support@thecbf.org.uk for information about potential opportunities to get involved.

 

This article is from the 2016 Summer edition of 'Challenge', the Newsletter of the CBF. You can download a pdf copy of the newsletter, or read it online.

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