What it means to me to be a carer of a child with a disability
By Heather Cox
When you are first thrust into this parenting gig of raising a unique child or child with additional needs, delays and/or a disability, you start hearing yourself described as a ‘carer’. Initially I was a bit confused by this word. ‘But, I am a parent’, I thought. ‘Why are they referring to me as a carer? Are not all parents carers?’
I guess I thought that you only could be a carer if you were still looking after your child when they reached 18. But as time has gone on I realise that what we do as mums of kids with disabilities is extra, it is a carer role, and I wanted to outline what this means to me.
Being a carer means going to numerous specialists in the hospital for check-ups with my child.
Being a carer means staying up at nights joining Facebook groups for my child’s numerous diagnoses and learning all about them from other carers and their experiences.
Being a carer means organising life around therapy and doctor appointments.
Being a carer means navigating the NDIS, budgets, applications, reviews and everything that comes with that!
Being a carer means a night out for me has been attending ‘school readiness’ courses and ‘toilet training a child with a delay or a disability’.
Being a carer means always worrying about the impacts of my child’s disability on my child, their sibling, my relationship and my own mental health.
Being a carer means driving from one side of the city to the other for the right therapists for my child.
Being a carer means knowing what hydrotherapy, hippotherapy and conductive education are.
Being a carer means having a tribe of other carers who ‘get it’ and are navigating this crazy life. It means always having some on messenger when I have those ‘urgh!’ moments where things don’t go as planned or ‘woohoo’ moments when your child cracks a goal!
Being a carer means being passionate about inclusion and making life better for people with disabilities.
Being a carer means that our days are not predictable, and neither is our child! Whether that be behaviour or health, some things are not in our control, though we try to control as much as possible. It means picking ourselves up after things go awry and remembering to take one day at a time.
Being a carer means that conversations with mums of typical kids can seem like a totally different world to us sometimes!
Being a carer means it is vital to also take time to care for me.
Being a carer means understanding that the role is sometimes the hardest but also the most meaningful role you can have.
No one grows up hoping to be a carer of their child, it’s the Plan B for many of us, but we are finding our joy, digging deep, pushed by love for our child and learning so much from them. Many of us feel we are better people; kinder and more empathetic because of our children and we wouldn’t change a thing.
About Heather and Arianna
Heather is mum to two girls, Erica, who has developed typically and Arianna, whose journey will be different. Heather writes a blog and has a FB page called Arianna’s Army which she uses to share her journey, educate and raise awareness and as an outlet for her own feelings.
Arianna has an overgrowth condition called Sotos Syndrome, for her it means she is developmentally delayed and has scoliosis, which she wears a brace for. She is showing her mum every day that she is a fighter.
