Cheers to you, Aussie carers
October 15, 2024
It’s National Carers Week in Australia, so we’re celebrating by diving into some stories, wisdom and advice from our community down under. Here, five parent carers living in the sunny country share a little of what they’ve learned.
What Eliana Joseph found most challenging in the early days of caring for her son, Luke, who has a rare genetic condition.
It’s so hard not to compare – it’s a natural thing we do in all aspects of life. I don’t believe it comes from a bad place, but more of a ‘what life would have looked like’ perspective. We had already been through a lot of difficult and painful experiences so it did hit me hard. No one wants to see their baby struggle or ‘fall behind’.
I let myself feel the hurt and the sadness and when I was ready, I reminded myself of all of the hardships he had faced that none of those other babies had been through. I remembered all of the amazing things that make Luke, Luke. And the special things he can do that many other babies can’t, such as using Key Word Sign to communicate.
Despite his challenges and developmental differences, there was still a smile on his face and to me, that is what really matters. He is loved, he is happy and he is uniquely himself.
Sinéad Quinn on how her relationship with her husband has changed since they welcomed their son, Torryn, who has Down syndrome.
The unexpected diagnosis was a real test of our relationship, as well as our second baby being born prematurely at 28 weeks. We came together to weather through the storms, but on reflection, we weren’t communicating with each other. We were just surviving.
There were few books and no podcasts for us 15 years ago, just monthly parent support groups – which were grim, to be honest – so we felt quite isolated in moments. I wanted to work together to heal and, thankfully, my husband agreed. We started with couples’ therapy and worked on speaking up for ourselves. Just as importantly, we worked on properly listening to each other.
These days, as ever, we are a constant work in progress. We still have seasons of couples’ therapy – not just when things are hard, but when things are good. As with anything in life, our relationship requires maintenance to stay strong. It’s not always easy and we most definitely have bumps along the way, but with the commitment to consciously work on our love and union, we are making it work.
What Grecian Martin, whose daughter Riley has developmental differences and a feeding tube, wishes other people new about life as a parent carer.
That it’s not easy at all! We never know what the day will bring and the unknown is hard to accept. I want people to know that we aren’t ‘strong’ or dealt these cards because we are amazing – we do the best we can in each and every moment and we would do anything for our children. Our brains never turn off and there is always something to do, or an appointment to make or a therapist to email. It’s a never ending list.
I wish people weren’t afraid of our Riley bear. Yes, she may have seizures and be PEG fed, but we can teach you how to support her. Lots of people – including family members – tend to turn a blind eye towards her and us because of her disabilities, and that does hurt.
As a mother of an autistic son, Fletcher, Courtney Welsh shares the hardest and most joyful parts of her caregiving experience.
The thing that I find the most challenging is the constant mental load. Parenting is hard enough, but the mental load for disability parenting is relentless. I am always looking for danger and triggers while finding pockets of time to try and embrace the beauty. The balance is not always balanced.
I also really struggle with not being able to comfort Fletcher in the traditional way. When he hurts, as a mother, my instinct is to cuddle and be close to him, but he is not affectionate at all. He finds emotions quite triggering, so learning how to comfort him in his own way has been a challenge.
My joy comes from seeing Fletcher smile every single day – the moments of regulation when his face softens and he looks genuinely happy and calm. It brings tears to my eyes every single time. Even now, nine years into our journey. Everything I do, I do it for him and his brother.
Her daughter, Arianna, has Sotos syndrome – and Heather Cox has this advice for parents who are new to caring for a child with disability.
Take things one day at a time. Find joy and remember that your family life can be beautiful. It might not look like everyone else’s, but we all have things going on. Connect with others and learn from mentors in this space. Listen to those with disabilities who are adults. Have hope – as often predictions are based on children who had less support and therapy than our kids did.
Feel the feels early on. It’s okay to be upset and angry as you adjust – I still have those moments sometimes. Be kind to yourself, because this was not what you expected and that takes time to adjust to. Know that all parenting is hard – even if ours feels so much more some days. It’s often how we cope with it that makes the difference. And again, one day at a time!