Laura Smith is 29 and lives in Worthing with her mother Angie and sister Katie, 27. Katie has autism and is non-verbal, which greatly affects her communication and behaviour. Laura tells us what life is like with a disabled sibling.
Katie is always at the forefront of my mind. Sometimes I dream I’m autistic and she’s fine – we’re from the same gene pool so I wonder why it’s her and not me.
My earliest memory is of defending her. I was about four and Mum was walking me to school when Katie ran into the road. A car swerved and everyone was watching in horror, scared someone had been knocked down. Mum grabbed Katie and a little boy said: “She’s a retard.” So I hit him. The head teacher said I shouldn’t have lashed out, but that he shouldn’t have spoken like that either. I felt she understood. Lots of people don’t.
When you’re young, you don’t know your family is different. I just talked and played with Katie and dragged her around with me the way all sisters do. My parents knew something wasn’t right early on and it was a relief for them when she was finally diagnosed around age three, although there wasn’t nearly as much understanding and support then as there is now. For years, my birthday wish was that my sister would speak. When I was 12, I stopped wishing. Somehow I knew it would never happen.
My parents were brilliant at protecting me and making my life as full as possible. They were very aware of all the attention on Katie. I was out practically every night doing things like sport and ballet and Brownies. I’m a black belt in karate because Dad worried that I might be bullied because of Katie and he wanted me to have the confidence to deal with it. I now know many people with disabled siblings grow up with a real resentment at the lack of their parents’ time and attention or at the way everything in life centred on one person, but I’ve channelled that differently.
When Katie was seven, she went to boarding school from Monday to Friday. I got more of my parents’ attention but we all felt guilty without Katie. We really appreciated the time we had together when she was at home, even when she was being very demanding.
I’ve always felt responsible for her which has even affected my career – I work in the charity sector now.
My friends tell me that I’m not good at prioritising myself or looking after my health. My boyfriend noticed that my diet as a child influences how I eat now. We had quick and easy meals in case Katie disrupted everything – fish fingers and chips rather than fish and salad and I’m still not used to the luxury of lingering over a meal. We’ve never gone to the cinema as a family and I would watch friends’ families sitting chatting round the table after a meal knowing that couldn’t happen with us.
No one understands what it’s really like growing up with a disabled sibling unless you’ve experienced it. When I met other people at a support group run by Sibs, a charity for siblings of disabled people, it was amazing.
It sounds selfish but it felt like it was about me for the first time rather than about supporting Katie or my parents. That’s really important, but it is just as important to help the siblings and to consider their feelings and concerns about the future.
It was very difficult for me to go to university in Bournemouth, especially since my parents split up when I was 18. I moved back last year as I was always ready to dash home at a moment’s notice anyway. It felt better for us to all be together, especially because Katie was going through a difficult period with her epilepsy.
Katie’s tall and quite heavy and she can be quite aggressive when she gets frustrated so I worry for Mum and what the future holds. Our family have all been on the receiving ends of head butts but it is worse when it happens to someone outside the immediate family.
I remember Katie headbutted my best friend Holly in the face when we were 10 – I still feel sick when I think back to that. Holly was scared and in a lot of pain but she was fantastic about it. I have always been blessed that my friends have understood.
I love Katie. Sometimes I wear her slippers and she chases me through the house for them and Mum says: “Don’t wind her up!” We squabble over who’s getting the front seat in the car but that’s what sisters do.
Katie will always be a huge part of my life. Anyone marrying me is basically also taking on all the responsibilities that come with that and I sometimes worry about the prospect of having an autistic child myself. Through Sibs, I have seen I am not alone in having those concerns.
I hope that more siblings will receive support when they are younger and as adults in my situation. The future for me is a scary prospect as I consider the role I will play in supporting Katie. I just want to do the best by her and ensure our bond as sisters is a strong as possible.
As told to Joan McFadden.
01535 645 453
Enable, Sep/Oct 2012