My Experience as the Sibling of a Disabled Person

“I just accepted the situation even though I didn't fully understand it myself. It was weird to know my little brother wouldn't grow up like other children his age.”

Words by Louise Worthington

I can remember being so excited for the arrival of my little brother. The memory is still so vivid in my head : 8 year old me rubbing my mother's stomach whilst we sang the 'Baby In The Belly' song. My mum had her arm around me pulling me in assuredly as if to say , 'it will be ok, it will be alright'. For me, this was a new experience, I was already a big sister to my little sister, but we were born too close to each other for me to remember. I finally had a chance to truly see the miracle of pregnancy and new life. The months went by so quickly and every day excitement would build up. I couldn't wait for my little brother to arrive. And then he did.

My mum has a photo of me and my sister in school uniform peering into the hospital cot where my little brother laid. I felt so happy that I could be a proper big sister to my little brother. Everything was joyous, love oozed out of all the family members who visited, everyone cooed and awed as they held Jerome. 

Soon enough my mum was free to be discharged from the hospital and I was happy to finally be a big sister in a familiar setting. Months went by and everything seemed ok. The happiness was fleeting. My little brother would seem to progress and then not. He would do some things 'normal' babies would do and then do things that were odd. These oddities became concerns.  Soon enough we had found out that he had Downs Syndrome and Autism. Unfortunately, the autism was not detected until much later on. 

My little brother would seem to progress and then not. He would do some things ‘normal’ babies would do and then do things that were odd. These oddities became concerns. 

I don't really remember exactly when I was told. I do remember the normality of it all. I just accepted the situation even though I didn't fully understand it myself. It was weird to know my little brother wouldn't grow up like other children his age. There were responsibilities other young children didn't have that I did. Any other young person may not be too delighted at the prospect of having to change a nappy, or constantly monitor someone or keep someone entertained for hours, but I adjusted quickly and I learned how to cope with this new situation. As a young child I just moved on with life but as an adult I regret that I have this misplaced grief for the person he could have been. This feeling doesn't last long as I'm reminded of how wonderful my little brother is. He's such a bright person who understands the world more than I even thought he could. 

Being the sibling of a disabled person can be troubling and hard at times, but the joy you receive from them , the pride you feel when they achieve something… it makes you realise that the little things in life matter much more than anyone would think. 

Words by Louise Worthington