Testimonial: "When families speak to me, they know that they are speaking to someone who has been through it.'

I wish I’d known…

6 October 2022

As a nurse and a mother, I learned quickly that I had both medical intuition and mother’s intuition.

Hi, I’m Amy, and I’m the mum of three boys. My twins, Xavier and Alex, are six and they have cerebral palsy. My older son, Elliot, is nine.

I’m a mental health nurse, so when my twin boys were in neo-natal care, I was lucky because I knew how the system worked, and I pushed to be involved in every aspect of their care.

Sometimes it’s a struggle to connect with the right medical and allied health services when your child is young. My understanding of the system allowed me to make sure we had the right supports after the boys were discharged from hospital, and all the way through to diagnosis when they were 18 months old. From there, we joined the NDIS and started getting funded support.

Now I work as a telehealth nurse at the Cerebral Palsy Support Network (CPSN) and I get to bring my experience as a parent of children with cerebral palsy into my role. When families speak to me, they know that they are speaking to someone who has been through it. I link people to relevant support and resources, sometimes even to resources that I wish I’d known were available when I was first navigating the system a few years ago.

Initially, we had to do a lot of research to find the supports we needed. I see it in my work all the time: families are thrown out into the community with simple instructions like “Find an OT” and that can be a bit tricky. I now say to parents who are going through the NDIS process to ask if they can have a support coordinator. We were never offered that. I didn’t even know they existed until it was too late!

I’m really happy with where my boys are at now, and I’m so proud to say that they’re both really happy too. We had a fantastic journey through kinder – even during COVID – they embraced our boys and the kind of experience we wanted for them.

The twins are in Prep now and they are loving their experience at school. We’ve been able to negotiate an arrangement where they spend three days per week in a mainstream school and two days per week in a specialist school. My boys are non-verbal, so the specialist school offers them extra support with communication. There’s strong liaison between the two schools. I feel that we’ve been incredibly lucky to have people working with us who are flexible and open to what our boys need.

Organisations like ACD and CPSN are doing vital work for families who have children with disability. The information that is available can help people create the life they want and advocate for the support that their children need. In my role at CPSN, I spend time on the phone with families and, even if I’m just giving a little bit of moral support, or advice about how to navigate the NDIS, I’m helping them at that point in their journey.

_{CPSN telehealth service provides over the phone information to people with cerebral palsy throughout childhood and into adulthood.}