Being the parent of a sibling of a disabled child

One of the hardest things, if not the hardest thing, when Willow was born was the impact on Chops. It sounds a bit ridiculous given my other child was fighting for her life, but my life had revolved around my little boy for the previous 2 years. Two years of imagining what path his life would take, watching his little character unfold, then imagining the impact of a sibling on that, how it would enrich his life, I imagined how it would be in years to come having two children only two years apart. Then we were faced with how his ideal had been shattered, our amazingly precious little man’s childhood had changed, his entire future changed the day willow was born.

Yes, his life would have changed with the addition of a sibling anyway but this was different. Was our son going to have to go through life with a heartache of having lost his little sister? Would he be picked on at school because of his sister? We cried for the loss of the future he was supposed to have.

Then we focused on the positives of having a severely disabled sister, it would make him a more caring, understanding man, he would have an insight into medical professionals, doctors, hospitals, physiotherapy and everything else he would otherwise likely not have experience had life not changed course the day Willow was born.

Lately my mind has been drawn back to the impact of everything on Chops. Willow has all the support she needs around her but Chops has only us, and his preschool for a few mornings a week. So I’ve started some more focused reading on the subject, starting with a book called, “Being the Other One”, by Kate Strohm. She is a  so if of a disabled person herself and the book is a very honest telling of her story and the impact it has on her, intermingled with other sibling stories from siblings of disabled children, now adults but of the impact of being a child and being a sibling of a disabled child.

I’ve shed several tears already and I’ve barely started it but it feels like a vital read for us as parents and will one day be given to Chops.


I think and hope we do pretty well by him, we try very much to make sure we all keep living a full life, do things we would have done had things been different, not just for the kids but for us too. Hell yeah, it’s bloody hard work and we constantly check ourselves and change how we do things to make sure we’re doing things the best way we can for our children and we do let the ball drop from time to time, as we all do, it shows in Chops’ behaviour, then we stop and pick up the game again, it’s usually when we’ve sidetracked off into a less natural approach to parenting!

Reading what I have so far from stories of adult siblings, one thing that seems common is the wish that they had meet other siblings in childhood and I’ve decided to set up an after school siblings group once Chops starts school, it feels important. Watch this space!

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