Siblings and special needs: the life of the other child
By Zoe Gow
The side-stepped child as you go to help your other child with a seizure. The child who wants to tell you about their day but your other child is crying in pain. The child who misses out on things an average child doesn’t.
Siblings of children with special needs are a special kind of child. A child that has patience, empathy, resilience and unconditional love.
They are the other child who can too easily be forgotten.
As parents, we are thrown curveballs with our children’s health and our other children have to come along for the ride with us.
They have to grow up much more quickly and face trauma and stress like we do too.
Our girls have both had to be the other child. Having two kids with epilepsy forces that, and now with Lizzy doing so well and Kenzie just recently diagnosed with juvenile fibromyalgia, the tables have turned in our house.
Many nights, I have watched Kenzie just going to her room while Lizzy had seizures or meltdowns, unable to do anything to help. I have watched Kenzie be the other child as her sister has been through VEEGs and interstate keto trips. I have watched her want to help and go and get Lizzie’s special teddies to help her through a seizure.
I have watched both girls have Christmas days and birthdays upturned and have the focus on them taken away.
I have watched Lizzy come to terms with being the other child and seen how hard it has been for her to realise that Kenzie needs me just as much as she does.
I have watched her become more patient and have a real understanding of being on the outside and being the other child.
I have watched how these experiences make my daughters understand the ‘quirky’ kid at school and get frustrated when others don’t understand the differences.
I have watched them play and talk to kids with all different levels of disability and difference and treat them equally.
I wonder what it feels like as a child? I have read a few books about siblings and most have talked about the anger of their siblings getting all the attention or missing out on things because their family put their money into getting their child well. They talk about missed special days and a feeling of being helpless and stressed.
But they also talk about the positives their life brings them; they talk about being independent earlier and the insight they have into what life is really all about and how they have used that insight later in their life. Out of all my girls’ experiences (both good and bad) I really hope that they come through their childhood with that insight along with an empathy for people that they never would have got if they hadn’t lived through being the other child.
And what do we feel?
Guilt, that we can’t focus on all our children equally.
Anger, that they may need help psychologically because of the family dynamic in a special needs household or the trauma they have seen and experienced.
Pride, that they can be independent or able to help with seizures or other health issues without being asked.
Sadness, that they have lost their childhood early.
Helplessness, that you can’t change the situation.
Mumma bears, we can’t beat ourselves up about this, but I know we all do. We are all just doing our best with the resources and strength that we can muster.
Our kids inspire awe in us with how they cope and they are part of what keep us going.
We are incredibly privileged to have these other children who just learn to make the best of things.
So tonight when you are telling the kids it’s time for bed, remind yourself to give your other child an extra big squishy hug and tell them how wonderful they truly are. They will become adults with memories of childhood which will shape their lives in so many ways.
They may become nurses, teachers, disability support workers, doctors, health specialists, coaches, community workers and many many more professions where caring and empathy count.
Zoe is the mum of two teenage girls who have both lived with epilepsy and a medical condition called Postural Orthostatic Tachycardia Syndrome. She blogs about life, love, learning, identity, strength, resilience, and their journey with chronic illness at The Carbon Copy Life. You can also follow her on Facebook.