Parenting comes with a natural expectation that you must advocate for your child at some stage. As a parent of three boys, including twins with cerebral palsy, Amy talks about her experiences advocating within the world of disability.
Over the last couple of years, I have advocated for my boys and my family on a few different levels, from advocating within my disability networks to advocating for my twins with NDIS matters and in the health system.
The first experience I distinctly remember was when my twin boys were around a week old; I remember walking into the NICU and looking at Ollie and knowing something wasn’t right. He was paler than he had been and didn’t seem ok.
I asked the nurses to investigate, and while they did, they soon reported that all his vital signs were normal and everything looked okay. I kept mentioning this throughout the day, just knowing something wasn’t right.
Eventually, with some pushing, a blood test found he was significantly iron deficient and required a blood transfusion. I was so glad to have advocated strongly for him and that timely treatment could be implemented.
I think a lot about how I can best advocate for all three of my boys and try to ensure I stand up and advocate for what they need when I can. Sometimes, I walk away happy with how I supported them and where I have achieved the required outcome; however, a lot of the time, like most parents, I walk away and think about what more I could have said or done to advocate for them.
Advocating within the Sector
Last month I was fortunate to be invited to attend a NDIS Review workshop, and a family workshop with the state minister for Education a few weeks later. It was a privilege to attend both events to advocate for the needs of children with disabilities, including my boys.
The other families and I advocated for a NDIS that supports the whole family through early intervention and beyond, inclusive schools, and an education system that supports all children in their chosen setting and provides the highest education quality.
Advocating on the Frontline
In the last week, I put my mum’s advocate hat back on in the healthcare system when one of my twins needed an Emergency Department visit, and the experience was far from positive. As usual, I advocated for him but walked away, wishing I had expressed my opinion more.
I decided to provide feedback to the hospital through their online feedback site. I was happy that I had this opportunity to give feedback on the experience and express my concerns, which in part related to the level of staff education around ensuring the unique needs of a child with a physical disability are met.
As a parent, advocating for our children can be tiring, stressful and confronting. I am not naturally assertive and often find it very challenging. I reflected on the notion of advocacy and wanted to share some of my thoughts on this. Take home tips for Advocating.
Listen to your instincts: Like you are the expert on your own body, a parent or carer is the expert on the child they care for. Learning to listen to your intuition, to your ‘gut feelings’ is an integral part of advocating for yourself or others.
Consider what the other person has to say: Whether it’s a doctor or an assistant principal at school, taking on board what they have to say is important. I then use my expert knowledge of my child to help inform how I advocate for them and get what they need.
Reach out for support: It’s also helpful to get some support when advocating, perhaps advice from a family member or a professional organisation (like CPSN).
Online information can be useful; however, consider the source: Be careful when looking for information to support your advocacy. There is a wealth of information online; however, be aware of its credibility. Sites like WebMD and Wikipedia are not very reliable. However, sites like Raising Children Network and My CP Guide can be great starting points. Support Coordinators can also offer effective support.
Self-Care is important: As always, self-care is important. You need to look after yourself to be able to effectively care for and advocate for others.
Connect with an Advocacy organisation if needed: If you have tried to advocate for yourself or another person and cannot achieve the outcome needed, reach out to a formal advocacy service.
Advocacy Services
This article first appeared on disabilitysupportworkers.org.au on May 26 2023