Growing up as a Young Carer

Written by Madeleine Buchner, Founder and CEO of Little Dreamers Australia

 

I grew up as one of 2 children. A pigeon pair. Girl and boy. I always believed I could be a good daughter; and I knew that I had perfect parents, but over the years I have doubted what I know many times. Why did my parents seem to care about my brother more than me? Did my parents even love me? Why are there times when everyone is stressed? Was everyone happy?

My brother has asthma, epilepsy, an adrenal insufficiency, fibromyalgia and encephalitis. He has also had pneumonia, whooping cough, chicken pox that went to his lungs, glandular fever and more. As a result of this, I grew up as a Young Carer or “Special Sibling”.

You may not know what a young carer is, but I bet you know one. A ‘young carer’ helps a family member who may have a disability, mental illness or chronic illness. These incredible kids help to care for their sibling or parent; and complete tasks that are way beyond their years, including emotional and practical support.

I was nearly 3 when my brother was born. By the time he was 6 months he was in hospital the first time. Since then I have waited for the ambulance many times, sat next to him in the car as he has a seizure and spent countless hours with him in hospital. At home I often did my homework by torchlight and knew to lift my chair rather than scrape it on the floor to not make any noise.

Growing up I had lots of friends but I was still socially isolated. Nobody, including me, knew the term young carer back then, but I knew my life was not the ‘norm’. I played with my dolls, loved dressing up and dancing. I also helped get my brother’s medicine while my mum held him still; sat with him so mum could shower; and I would walk past his room and check his breathing while he slept.

I grew up quickly, mature and responsible, but also anxious and insecure. When I was at school and my brother was home sick, I worried. Was he okay? Was he going to go to hospital? Would he be at home when I got home? I craved attention and my parents have always felt pulled between wanting to give attention to both their children, who both needed them so desperately.

As I got older, I understood more. I became a teenager, hung out with my friends and left my room in a mess. I also stayed home to look after my brother when my Mum worked, continually checking on him, giving him medicine and reading to him. Now I am the first with my keys if we need to rush him to the doctor or hospital. Now I visit him in hospital with special gifts, including things to make him laugh. I know just what he likes and what works.

When I was 16 I founded Little Dreamers Australia to support other brothers and sisters of sick kids. When I first began it was a side hobby, now it is my full time job and my mission is to improve the emotional and physical health, wellbeing and resilience of Young Carers to ensure that caring is a responsibility shared by Government, community and family. I believe in creating the things that I wished existed when I was younger, and being the role model for other Young Carers that I didn’t have. Little Dreamers has supported over 1,200 Young Carers throughout Australia and runs a number of different programs and one massive Young Carers Festival in October every year to thank Young Carers and raise awareness about how hidden this at risk group in the community can be.

While I run the business, when asked why I do it I always looks back to my brother. He is my daily inspiration and the reason I push so hard at what I do – so the brothers and sisters of sick kids can be the best support for their families but also for themselves. I am a big advocate of making sure a carer takes care of themselves too – even though I am not the best at doing that myself!

Looking forward is hard, you don’t know what every day is going to bring but what I do know is that there will always be kids who grow up in families caring for a parent or sibling with a serious illness or injury. But what I hope is that in the future they no longer feel isolated, lonely and anxious thinking that their parents care about their brother is sister more than them. They grow up knowing that there are other kids around them who are just like them – they grow up knowing that they are loved, cared for and having a circle around them to support them when they need it.

I know that in the future the most important thing to me will always be my family. Living every day to the fullest and proving to myself that a little girl, whose family sometimes struggled to put dinner on the table, can in fact change the world.

My brother is now my best mate, we share our own personal language and jokes. We laugh, fight and gang up on our parents. My brother loves to sit on my bed at night when our parents have gone to bed and confide in his big sister. We have made it so far and I think we did okay!