Top tips from carers, for carers

My name is Patricia. I'm a single mum of two kids who are 12 and nine. I've been here in Melbourne for almost 12 years now.
By the time my son turned one year, he stopped talking. By the time I googled that, what was happening to my son was autism.
Their dad was diagnosed with bowel cancer. I was very busy caring for their daddy. Unfortunately, he didn't make it. So by the time the girl, Nyota, turned one year old and Nathan three and a half, he passed away.
One month after they lost their daddy, I went to see the doctor and both together, after maybe a period of two months and half, I got the final diagnosis.
From that day, I looked at my two kids. I realised that they have only me, their mother. I was there and they were there for me as well.
My life was at that time a life of isolation, a life of, I was very stressed, overwhelming and uncertain about the future.
I found a place to educate. There was also one of the staff, or the teacher from Western Autistic school.
So there were people who has at that time the knowledge to answer all the question I have.
The normal day for me will never be 24 hours. It's always 26 hours for me!
I have learned with time to remain calm. Because if I get nervous or frustrated it’s going to impact or affect them.
Being a carer, you cannot care for someone if you are not healthy yourself.
I had made that mistake for a couple of years. And the day when I went to a workshop via Carers Victoria is the first time I realised that I have to look after myself.
Do something for yourself. Do something that you are passionate with during your free time. You need to organise your free time no matter what.
If I need to give advice to someone who just found out that one of their relatives got diagnosed with a chronic medical condition, I can just recommend them first to remain calm, and to be connected to the community, to the services, and through those services you are going to find a way.
My kids are the best thing that ever happened to me. They are my motivation. They are the ones who make me becoming the beautiful woman I am today.

My name’s Jacqueline. I'm 19 years old.
I care for my twin brother and my older brother, who both have autism and a range of mental and physical health conditions, and also for my mum when she had breast cancer.
And I'm a student, I’m in Year 12 in high school.
I started caring for my twin brother pretty much when we were really young because I naturally took on a caring role for him because we were together a lot of the time.
I think for me growing up, it made me take on a lot of responsibility earlier in life than most of my friends and it meant that I was often really focused on the wellbeing of my brothers.
And that meant there was a lot of time and a lot of stress in that sort of role, and it was hard for me to kind of develop my own identity outside of my caring role.
And as we've all grown up a bit, it's been nice to explore who I am outside of my family, and my own interests and the things that I'm passionate about.
It definitely has its challenges. I think especially in my schooling and my education is where my caring roles had the biggest impact.
I think it is quite hard to reach out for support as a young carer because it's not a widely recognised term.
There's not sort of like a defined action plan that schools and other institutions have when you go to them and you say, I'm a young carer and I need support. So I have struggled with support at schools over the years because young carer supports need to be ongoing.
So I think that ongoing care and support is quite hard to come by, but reaching out has definitely made a big difference for me.
Little Dreamers has been the biggest support of my caring role.
Before I was involved with Little Dreamers, I didn't actually know what a young carer was. I hadn't heard that term, and it's been really impactful to have people who know what my experience has been like.
So it's really nice to have an organisation like Little Dreamers be there for you, introduce you to other young carers, and sort of fill in the gaps of things that you missed while you were busy with your caring role.
Other young carers don't really need an explanation for why you can't go for coffee anymore or why you weren't at school that day.
They know that like family stuff is a really legitimate and valid thing that you have to deal with as a young carer.
The biggest lesson I've learned is that it's okay to slow down. So I think slowing down and making whatever decision you need to support your health or to help you manage your caring role on top of life in general is definitely worthwhile.
We won't be the same sort of carer our whole lives, like my caring role has definitely developed and changed as like my family members have done different things and their circumstances have changed.
So as we all sort of go our own way a bit more, it's important to know who you are apart from that role that you're so used to having.
If you've just become a carer, the thing I would like to say to you most is that your experience is valid and it's legitimate and the things you've gone through are challenging, and the things you will go through will continue to be challenging.
But I know that young carers are really strong people and I think young carers develop a really strong sense of community and belonging and also a sense of purpose to help others.
So if you've just become a young carer, know that it will be hard, but there is good support out there and it'll be worthwhile in the end.

I'm Stephanie Black.
I care for my two teenage children, Kia and Aki, who have both been diagnosed with autism.
I knew when my kids were born that they were neurodiverse and trying to get someone to take us seriously – that's where the journey began.
I could tell when my youngest was born that she was autistic and we went and saw a specialist. I feel like we got fobbed off, definitely.
And so then it was up to me and my kid's dad to do the research and fight for and advocate for our kids. We pretty much had to parent them in the dark. People didn't take us seriously for years.
I ended up home schooling our children for the most part, so it took the better part of 14 years to get our diagnosis.
I suppose one of the biggest challenges with autism is their sensory needs. So I'm running a household that’s very calm and soothing.
So I'm constantly on my toes, basically making sure that their schooling and learning environment, and the living environment, is as safe and comfortable as possible.
I really believe in listening to children and keeping in mind the adult they're going to become.
A really big part of my parenting philosophy from the get go is ‘I'm going to trust my kids to communicate their needs and I'm going to respond to them’.
I love spending time with my kids. They’re some of the most fascinating people and they give me lots really unique thoughts and they keep my mind open and really educate me. I feel like I'm as much a student of them as they are of me.
I guess I am [a] pretty positive person and quite resilient, which is I'm grateful for because it hasn't been easy.
It's very tiring and there could have been a factor in chronic illness. I have had chronic illness. Who knows? Could have been a factor in why my ex just upped and left.
It does make life a lot harder because the demands to do the right thing by these amazing children I've been given is fairly extreme.
My children deserve to have a good life where they can express their potential.
They've got great talents, they've got great traits, and I deserve the support to be a good parent.
My philosophy on life is it's going to take as long as it takes. And if we keep taking little steps, we're going to get there eventually.
You and your kids are going to be okay, even though it's not going to be easy, even though people are going to poo poo you and tell you that you're crazy, you're not. You know your kids, you know yourself.
You will have to advocate for yourself and your kids.
And that's okay.
There are amazing things about every carer and every diagnosed person, and that's what you're fighting for.

My name is Ruth.
I'm a carer to my daughter, Michaela. She has Down syndrome. She has a sister, Hannah, and a brother, Max. And she's 31 years old, and she lives home with me.
When she was born, it was a huge shock to us all.
We weren't expecting to have a child to be diagnosed with an intellectual disability like Down's syndrome. She was diagnosed within 5 minutes of birth.
Being a parent, first-time parent, is hard but throwing a disability on top of it and becoming a carer as well – that is a new ball game.
I suppose when she was first born all I was expecting to do was just be a mum.
And then I added the term carer as time evolved and you don't understand what that really means.
Caring is an every-day, 24-hour-day job.
You're always thinking about what I have to do next.
No one actually signs up for that job, and yet you're reliant on government services and helping, helping them to be the best they can be.
But in the long term, you end up forgetting who you are as a person.
I've had to give up working because my caring is full time and I've lost a lot of myself in that period of time.
One thing I recognise is that I see people [in] my own age group who don't have the responsibilities of caring, and they now going off and doing things, like they are semi-retired or retired, and they're going off on holidays and without a care in the world.
So I've got to my stage of life and I'm thinking I would like to really do all that.
But all I can think about is I've got Michaela. I'll just put that thought aside.
I don't know if other parents have done it, but when you first have a child, you have dreams and hopes and you sort of have a picture in your mind of what it's going to be like.
Future's an unknown thing but, yes, so I find it a challenge to think of where I was 31 years ago: baby on the way and not knowing what was going to happen.
And then my thoughts and hopes for the future totally turned around. Not knowing then I didn't know what the future would then be, either.
I think we often leave it to the last minute to put our hands up to say, I need help and it's important for your own wellbeing to say I need help and then to go and find that help.
Speak to other carers if you can.
I've come to realise that I'm more than just Michaela’s carer and I finally realised
I now need to look after my own wellbeing so that I can be the best carer to her, but also be a good person too and a good citizen for the wider community.

So I can honestly say don't forget who you are as a carer. I'm not just Michaela’s mum, I'm also someone else's wife and a mother to two other children. I'm a friend and I'm a sister and yes, so it's a bit of a struggle.
But for carers, don't forget who you are if you suddenly become a carer.
Don't be frightened, don't be scared. And don't be afraid to ask questions. Don't be afraid to ask for help. If you're frightened, that's okay too. If you've got worries, that's okay too. And there's nothing wrong with having those feelings.
So ask for help. That's all I can say.