Some would say Joshua Patrick sees the glass half full, but in reality, he’s a glass full to the brim kind of kid.
On top of the regular issues and stresses of a normal teenager, at 14-years-old he has also experienced and seen things far beyond most young people his age. Things that would challenge many adults, resuscitating his little sister on many occasions, assisting with port accesses and administering seizure medications.
His journey as a carer began very early in life when his sister Charlotte was born with an undiagnosed genetic condition. She has endured 61 operations, is continuously PEG-fed, and has countless other unexplained physical anomalies which result in her requiring round-the-clock, intensive medical care, much of which Josh provides.
“The thing which made me become a carer is the fact that I saw my mum struggling Charlotte’s increasing needs,” Josh said.
“I had a feeling of guilt, and that feeling made me want to start caring for Charlotte to take the load off my mum and get a better relationship with my sister.”
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Despite ever-evolving daily challenges, Josh’s attitude to life and his circumstances are inspirational.
He takes everything in his stride and manages to put a positive, and often quirky spin on everything he deals with.
“It’s fairly easy to learn how to do CPR to the tune of ‘Row, Row, Row Your Boat’ – your favourite song as a seven-year-old,” he laughed.
On the surface, he’s a normal kid and that’s mostly due to the way he has normalised his status as a young carer.
“I’ve been doing this since the age of six so I just see it as normal,” he said.
“Charlotte does have some very difficult challenges that she and our family have to face, like when her tube comes out of her mickey button. It floods the entire floor and we have to clean that.
“But just that feeling of getting to nurture a child and see the triumphs that she makes day after day, that makes up for it.”
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Challenging days aside, Josh focuses on all the positive qualities, connections, opportunities and memories he has made as a result of having Charlotte in his life.
“I've learnt a lot of practical things like Auslan, what a kangaroo pump is, and many other things that happen with Charlotte’s day-to-day procedures,” he said.
“But the big thing that I've learned about the world is the perspective of a person with a disability and what's happening on the receiving end of those stares that you get in the supermarket.
“I understand the isolation that you get from the rest of society just because you have a change in your physical or mental form.”
Josh’s passion for caring has recently evolved into disability advocacy.
“My strongest desire is to shine a positive light on caring as I genuinely view Charlotte as a gift and an opportunity,” Josh said.
“For all the small sacrifices and challenging things I have seen, Charlotte has endured far greater hurdles and challenges.”
He spends much of his time at schools and conferences inspiring his audience to reframe the way they see their distinct challenges.
“The three central ideas and ways I deal with the comparatively meagre challenges I face is by choosing to make tough situations as good as possible and choosing to approach them positively, seizing every moment and opportunity to make the most of the time we have with Charlotte and self-regulating,” Josh said.
“Self-care and regulation is vital, but how I approach these situations and perceive my life in general has a huge bearing on how I feel generally”.
Josh’s maturity and sense of humour are obvious. But it’s his adoration for his sister that is most evident.
“Let's be honest, I think Charlotte's favourite siblings are the dogs,” Josh joked.
“I love the experiences that I've had with Charlotte, the only thing that I would probably change about my life is for Charlotte not to feel sick day after day.
“Charlotte's being Charlotte, that caring person that she is on the inside, I don't want to change one bit.
“But maybe if we could just put that personality, that upbeat little girl into a different healthier person, that would be perfect.”
Josh is also member of the Australian Youth Affairs Coalition, a National SWAN Sibling Ambassador, a maths tutor, a Carers Australia Media Ambassador and a TedX Youth speaker.
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A lot of the time parents or adults presume what the child wants and what the child needs. Adults can start by actually asking us questions as individuals. What would you like? What do you want to do? What do you want us to help you with? That would give us a chance to have more of an opinion and help us to have our perspective heard.
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Watch Josh's TedX Youth at Kings Park (42:28)
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