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Finding your voice: fighting for your child’s rights

A young man out bushwalking. He stands facing the camera.

By Marie-Louise Carroll

This article is part of My Plan Manager’s guest blogger series.

My son was 11 when he had a stroke and I became a carer. My family’s lives were turned upside down and everything changed.

I was suddenly a wife, a mother, a support worker, a nurse and an OT (Occupational Therapist) but one of the most important jobs I discovered was advocating for my son. 

It’s such a powerful thing to be a voice for those who can’t advocate for themselves, or to help teach people how to advocate.

I originally trusted a system that I thought would cater for my son’s needs and believed I would be able to access all the information I needed. Oh boy, was I wrong. I had to learn very quickly that it was me that would need to find the information, and then somehow navigate that information to help me help my son.

It was at that point I learnt to use my voice and question things that I didn’t feel were in his best interests, and that was when it felt like I was in a ‘fight’. Fighting for information, for support, with doctors, with disability services and even at times with my husband. All that ‘fighting’ soon impacts on your mental health. I can be so fierce when it comes to my son’s needs but then I can struggle with depression and fatigue when it comes to looking after myself.

I think because we are so strong in our carer roles others forget that advocating constantly can wear you down.

I often feel invisible as a person and my life is regarded as my son’s life. You know, people always ask, “how is so-and-so,” but never really ask, “how are you?” They have this perception that you are always so strong and ready to deal with anything and everything, but it’s not true…well that’s how I feel.

Throughout those struggles one day I realised something, I realised I had become ‘that mother’. I don’t remember when that happened, I just started to notice that not everything I was saying was taken seriously, especially with doctors. I was the mother who had too much to say, who argued with doctors or providers and was always looking over shoulders micromanaging my son’s care. I actually had a specialist who told me that I thought I knew more than the medical staff. This was said to me like I was a naughty child and it affected me more than I care to say.

The thing was though, I did know my son’s condition and I should have been my own voice in that situation, but I let myself down. Instead of advocating for myself I let these words hurt me and I was wrong to allow that. I think mental health affects us all and it’s important to be kind to ourselves, a lesson I’m still trying to learn.

I hate when people say I’m amazing or incredibly strong, I’m not, I’m just someone who loves who they care for and will continue to advocate for them as long as I can.

Marie-Louise Carroll is a mother, carer, nurse, advocate and support worker to her beautiful son Jordan, who is 24 years old. When Jordan was 11, he had a massive bleed in his brain which caused a stroke. Marie learnt to be an OT and support worker to him and then (to pay for his skiing goals) she became a support worker at Vision Australia. In ‘past lives’ a singer, dancer, office worker, lollipop lady, dance teacher, Marie is currently a disability rights advocate with regular public speaking engagements.




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