National Carers Week is a time to acknowledge and celebrate our amazing community of parents and carers of children with a disability.
Carolyn and Pali, both parent carers and peer leaders for the Southern Region Chinese Parent Carer Group, share their stories.
Tell us a little bit about yourselves and being a parent and carer.
Carolyn: I am a mum and a carer for my 15 year old son, who has a mild intellectual disability. Being a teenager is already a very challenging age, and this makes my caring role even more important. I am also a carer for my husband, who was diagnosed with thyroid cancer six years ago. My role is more than being a parent and a wife — I also support their health, learning and daily needs. Caring has taught me patience and shaped me into a stronger and more compassionate person.
Pali: I am a full-time mother who cares for an eight-year-old child with autism and a five-year-old child. My son was diagnosed with autism at the age of two and a half, coincidentally during the COVID-19 lockdown, which exacerbated our difficulties in accessing information and support. As neither my husband nor I have any family history of autism, the situation was entirely unfamiliar and challenging. Initially, it was difficult, but as parents, we recognised the importance of maintaining our strength for our child. Consequently, I actively sought various avenues to support him, joining numerous carer groups to acquire knowledge and resources.
What is most rewarding about being a parent and carer?
C: The most rewarding part is watching my child develop and grow, no matter how small. Every small step to him is a big step. We celebrate every small step along his journey. Those little milestones remind me why the hard work and sacrifices are worth it.
P: Given that autism was a novel field for me and English was not my native language, I encountered double challenges when initially learning about it. Initially, I felt disoriented, hopeless, and apprehensive. After all, it was my first experience as a parent, and even more so, as a parent of a child with autism. However, gradually, I came to understand that having such a unique child is actually a life lesson, teaching me to develop strengths in areas where I was previously lacking. Through this journey, the most valuable lesson I have gained is learning to appreciate all that I have and to be grateful for the individuals in my life.
What is the biggest challenge of being a parent and carer?
C: One of the biggest challenges is trying to balance caring duties with looking after my own wellbeing and managing family or work needs. Caring can be physically and emotionally tiring, and sometimes it feels lonely. It’s also hard to find and access the right supports and services, which takes a lot of time, effort and persistence. The uncertainty about the future is another worry, as carers want to make sure their loved ones will be well supported now and in the years to come. I always like to be prepared before the time comes.
P: In my opinion, the most significant challenge of being a parent of a child with special needs is learning to accept our child as they truly are. As parents from an Asian background, we were often instilled with the values of obedience and avoiding conflict, which naturally led us to raise our children with the same mindset. However, we frequently overlook the fact that our child’s physical and emotional wellbeing is paramount. Overcoming external opinions can be difficult, and confronting our own inner fears and expectations as parents is often the hardest aspect.
How do you look after your wellbeing?
C: I like doing things that help me relax and feel calm, like going for a walk or connecting with friends. Gardening is like therapy for me and I also enjoy doing arts and crafts, knitting, crochet and listening to jazz music. These little breaks recharge me so I can keep going.
What is your top self-care tip?
C: Take some time for yourself, even a short break for some “ME” time. Do something that makes you happy or peaceful. Looking after yourself helps you stay strong and be a better carer for your family. You need to be both physically and mentally healthy to support the people you love.
You’re a peer support group leader for Connect’s Southern Region Chinese Parent Carer Group, does this shape or influence your role as a carer? How?
C: Yes, definitely. Leading the Chinese Parent Carer Group allows me to connect with other parents who have similar experiences and cultural backgrounds. It reminds me that I’m not alone in my journey and helps me stay strong. I also learn from others and see things in different ways, which in turn supports me to be a better carer for my son.
P: I am humbled to lead the Chinese Carer support group. The most gratifying aspect of this role is witnessing carers who initially appeared weary or distressed leave with smiles after participating in our activities. It has also instilled in me the significance of self-care.
How do support groups, like the one you lead, help to connect parents and carers?
C: Support groups give carers a safe place to talk and share without judgement. They help carers feel less alone and give practical tips and encouragement. In our Chinese group, it also helps break down language and cultural barriers so carers can find the services they need with more confidence.
P: I firmly believe that the primary benefit of a carer's support group is that it offers a secure and helpful environment for carers to take a respite and express their emotions or frustrations. Within this setting, we genuinely understand and accept each other.
This year’s theme for National Carers Week is ‘care for a carer’, how can people show their care for carers like you?
C: People can care for carers in simple ways such as just listening without judgment, saying thank you, checking in with a kind message, or offering help with small things. Giving carers a short break or asking how they are really can mean a lot. Communities and services can also help by providing inclusive services, flexible support options and opportunities for carers to have their voices heard. And importantly, acknowledging the role of carers helps us feel valued and seen.
P: I think it doesn’t take much—sometimes just a simple question like “How have you been lately?” can mean a lot. Many carers simply need someone who can empathise and listen to them, and that alone can give them the strength to keep going. So, don’t hesitate to show care and concern for others.
What is your message to parent carers this National Carers Week?
C: To every parent carer: You are doing an amazing job, even if it doesn’t always feel that way. Remember you’re not alone, and it’s okay to ask for help and to prioritise your own wellbeing too. In this National Carers Week, I encourage you to celebrate your strengths and remember that you are valued and appreciated.
P: You are brave — don’t be afraid.