I have an incredibly unique family as both my brother and sister have a degenerative disease of the nervous system. My Mum is in the last stages of Multiple Sclerosis (MS). So from the get-go I was in a world of disability, experiencing the good, the bad and the down right ugly!!! The advice I … Continued
Being a sibling can be complicated and challenging. Many siblings grow up not knowing there are other people out there with similar experiences, but it can really help to know that you’re not alone. In this section, adult siblings share their stories of life with their disabled brother or sister.
My parents were foster carers. In 1976 when I was 4, a baby boy named Paul was placed with us. I cannot remember a time before Paul and I grew up together as brothers. Paul has severe learning disabilities and autism. He communicates through rote behavior & echolalia learnt through his lifetime. In the ‘moment’ … Continued
Shamini entered Poetry for Good, a national competition that ran in the Spring of 2021. Her piece ‘Risk Assessment: High’ was highly commended in the spoken word category. Many siblings will relate to this powerful and articulate poem, that highlights the unseen work of sibling carers during the pandemic. “I entered this competition because I … Continued
My sister, Mary Kaye, was born with cerebral palsy (CP). She has had a number of other health complications throughout her life which can go a long with CP. I am 70 years old and Mary is 5 years younger than I. Two brothers fill out our family of 4 children. In our family there … Continued
How have the last 6 months been for you as a sibling? The last 6 months have been immeasurably better and easier than the first 3-4 months of the pandemic. The company providing my brother, Jonathan, with care & support have been fantastic. They had a recruitment round over the summer, which means he’s now … Continued
The day my sister was born, I had no idea this tiny baby would become the most important person in the world to me. Nearly four decades later, we are soul mates. As children, we could be silly together but we were too different to enjoy the same things. That all changed when I took … Continued
My sister is only one year older than me. When I was born, in spite of a very difficult birth and a spell at Great Ormond Street as a newborn, she hadn’t yet been diagnosed with any disability. Everyone thought she was just slower at crawling and moving than other babies. The story goes that … 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
I struggle to think about the last 6 months of life as a sibling in Covid times, such a kaleidoscope of thoughts, feelings and experiences. Some days I feel like time is flying by, other days are long and difficult and loneliness really hits hard. The loneliness of the last 6 months has been really … Continued
My brother is in his 50s and lives semi-independently with the help of myself and carers. Before coronavirus was an issue, he spent his week doing activities at a local centre and enjoyed drumming and ballroom dancing lessons. My brother has anxiety and traits of autism, so these activities were great for helping him to … Continued
Would you like to help other siblings by sharing your own story? Please get in touch.