Five adult siblings tell us about their experiences of genetic screening and genetic counselling. “I’ve had genetic screening and genetic counselling twice, the first time I was 16 to see if I was a carrier for the DMD [Duchenne Muscular Dystrophy] gene. I would want someone to know that there is no shame in wanting … Continued
I listened to the TED Talk – Alicia Maples, Recognising Glass Children. As a ‘glass child’ I found this difficult to listen to but very interesting. So much of what Alicia said made sense to me and it made me very reflective of my own childhood. My childhood was wonderful in so many ways, but … Continued
I’ve recently made some new friends. I want to explain about my brother and how he is severely Autistic and non-verbal. People often hear the Autistic part and don’t really pay attention to the non-verbal part. This can be difficult as it means people make an assumption about what my brother is like. They might assume … Continued
The thing about being a sibling to someone with a lifelong disability is that it is very difficult to know how you feel about it. The depth of emotions are never linear and only as an adult have I realised the significance of what this has meant, how it has shaped me, and how it … Continued
It is difficult to talk about the realities of being a sibling without feeling I am doing my parents an injustice for the incredible job they did raising us. Ultimately, however, no amount of love can ease the pain of experiencing just how cruel the world has the potential to be that young. … Continued
Sibling Truths Important: This is a personal account that may/may not be reflective of other people’s experiences. There are many times when having a sibling with a disability is hard; life-changingly, cripplingly hard. I feel we don’t speak about this enough. Social media is full of posts of parents celebrating their children’s disabilities, sharing moments … Continued
Being the sibling of someone with a disability is a story that’s hard to tell, not because it’s difficult to remember or describe, but because, for me, it’s just life. My sister is three years younger than me, and from the very beginning, her journey has been completely her own. She was born with a … Continued
My brother Richard is two years younger than me, and has severe physical and learning disabilities. He presents as if he has Cri du chat syndrome, but he is much more aggressive and hyperactive with significant behavioural difficulties. He can’t talk, he needs 24 hour care and he has a lot of health problems associated … Continued
Hellooo everyone! Thank you for taking the time to read this. My name is Emily, and I currently live in Brighton, around 125 miles from Suffolk, where my mum, dad, and sister, Kate, still live. I usually see my parents about once every three months and my sister about twice a year. Honestly, one of … Continued
Hear more about the experiences of siblings in the video below, which was created in 2021 to celebrate Sibs 20th anniversary