Families talk about how information from their child’s diagnosis helped them on their journey.
Knowledge to get help for your child
Getting a diagnosis can help you get some solid answers about what is happening for your child. It can also give you more ideas about what you and others can do to help them. This can help your child at home and at school, as Aunty Faye says.
“If we understood more about disabilities, if the school would explain, then the parents could work with the child as well. Or get special help … Because the most important thing is our children’s education, right?” – Aunty Faye
One part of this journey is being real and understanding your child’s diagnosis. It’s about asking questions like, “What does it mean?”, “Where do I go?”, “Who do I see?”, “What are their needs?”. It’s about getting the right support for your child. This is what we call advocacy.
A way to keep cultural identity strong
Being an advocate means meeting with professionals, schools and medical people and talking to them about what’s happening for your child – emotionally, socially, spiritually and culturally – and what they need. This is a strong way to keep cultural identity, and to make sure that their support meets your child’s and family’s needs.
Being an advocate on top of being a parent or carer can be tiring and frustrating. But importantly, it is also rewarding, as you are bringing cultural knowledge and behaviours into the disability world, so professionals can relate to your child and family with cultural sensitivity.
Knowledge to help your family
Looking back, Rodney says that knowing more about his son’s autism has made their relationship stronger. At first, he left a lot of that learning to Suzanna, because of his cultural ways. Now Rodney now pushes himself to do it too. He encourages other parents and carers – especially dads – to do the same.
“Push yourself. Bring yourself to people who are going to help you. People who are going to advise you. I know it’s hard … Research about the disability. That’s how I work with my boy. Just watching documentaries and how people relate. And you can see how you can communicate with your child. I used to tell Mum – ‘You go deal with it’, but then I’m not learning anything … it’s worth knowing, so you can enjoy his company, and he can enjoy your company.” – Rodney
When Stacey got the diagnosis for her young one, it made sense of her gut feeling that he had different needs, and gave her information that made everyday life better for both of them. Support from a community or disability advocate then helped Stacey to sort out the right pathways for her boy, and to bring together the shared knowledge of mainstream and cultural understandings of how to support him.
“The doctor said to me, ‘You’re right, he’s autistic’. It was a relief in a lot of ways. But in other ways, I’m thinking, ‘Oh god, what’s the road I’ve got ahead of me’. But since he’s been diagnosed, I haven’t looked back. It’s a bit easier to deal with the day-to-day things that go on with him – his outbursts and things.” – Stacey
Make sure your child gets help at school
Every special need requires a different kind of support, so the child can learn well. If school doesn’t understand your child’s needs, they might miss out. Some children go very quiet if they don’t get the right help in school. They might ‘slip through the cracks’ and drop out, without anyone realising they needed help. Some children get frustrated and muck up. As a Koorie educator, Aunty Faye has seen many children labelled with behavioural problems.