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
My twin severely autistic brothers were institutionalised at the age of 7. I was 6 and our younger brother was 5 at the time. This was in 1962. I do not remember our parents explaining to us what was happening, nor why our family was being broken up. I remember that my twin brothers were … Continued
I was 6 years old and my sister, Sophie, was nearly 5 years old, when Kathryn was born. Kathryn was a really easy baby, but when it came to her two year check – things weren’t quite right. Physically she was fine, but she wasn’t meeting milestones mentally and didn’t have any language. That has … Continued
When people hear I have an autistic sibling, they always seem to jump straight to an apology… like I should feel sad that my brother has autism. Personally, I have never understood this. I love my brother more than life itself and he is the greatest person in my life. It’s hard to say whether … Continued
I am the youngest of four children to two loving and amazing parents. Two of my siblings have severe learning disabilities and epilepsy. My sister, Mira, who is 45, and my twin brother, Prasad, who is 38. Their disabilities were caused by medical failures at birth. It has been an emotional roller coaster being part … Continued
I remember the night my brother was born – I was two and a half and it was probably the first time I’d been away from my parents. I was put to bed at our neighbour’s house in a big double bed. I was wary of the size of the bed and the sheets felt … Continued
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
After the sudden death of a mother, the elderly father reluctantly turned to his son and asked if carers would possibly help with his daughter. A lady who lives with a learning disability, cerebral palsy, epilepsy, anxiety and mobility issues. His son had spent the past 30 years working within Adult Social Care, to understand … Continued
Living through the pandemic coronacoaster has been even more challenging for those of us who have been shielding to protect clinically vulnerable siblings. My brother Dan has Profound and Multiple Learning Disabilities due to a rare genetic condition called ATRX. Our younger brother Sam who had the same condition passed away suddenly from sepsis … Continued
Where am I? Almost 2 years on – that is a good question and it feels like it is very difficult to answer. I really want to write this update and tell a story of everything being great – that I am back to doing the things I love. The reality is that I feel … Continued