Ivona's Story

My name is Ivona, I am 16 and live in New South Wales. One unique thing about me is that I am a twin.

I have been caring for my brother for as long as I can remember. My brother requires care because he is a nonverbal boy with autism. I have to care for my brother because my parents work from 4 am to 6pm and I am the oldest in the household.

My responsibilities include cooking, cleaning, waking him up in the morning and getting him ready to go to his special needs school. However, I also have to sacrifice weekends out with friends to look after my brother or days off school to take him to doctors’ appointments if my parents can’t make it because of work.

I also have to keep pretty much a constant eye on him as he has recently been having unpredictable seizures and we don’t know what’s causing them.

A good day caring for my brother looks like a day where we make chocolate chip cookies. A bad day caring for my brother looks like him having a seizure and me usually having to see it (which can be really scary) and calling an ambulance for him.

Being away from my brother makes me feel sad and I am usually constantly worrying about him. Being a carer has changed my life because I have had to grow up faster than other people my age and have more responsibilities. I have had to learn to be independent.

Because of my caring role I am unable to get good grades in school or have a social life or get a job. Being a carer has taught me to be independent, to help others and to not judge people with disabilities.

I would like others to realise that it’s not that bad to be a carer. My piece of advice to my fellow young carers is to talk to someone, don’t bottle up your feelings