At Irabina we’ve been fighting the isolation forced on us by COVID-19 with a regular interview series, sharing stories from Autistic voices and advocates from around the world. We’ve brought everyone closer together even as the pandemic forced us apart.
We’ve been fortunate to speak with the likes of Prof. Temple Grandin, Yenn Purkis, Prof. Andrew Whitehouse, Dr. Wenn Lawson, Kathy Lette and more, hearing their tips for coping with COVID-19 and discovering their thoughts on how the pandemic will affect our community moving forward.
But it’s our heartfelt conversation with long-time Irabina parent and supporter Michelle Payne that resonated the most.
Michelle’s eldest son, Oscar, was diagnosed with autism and a mild intellectual disability in 2011, at three years of age.
Michelle recalls, “all of a sudden I had a three-year-old that I didn’t know anymore… My ideas, my preconceived notions about parenting, they got very quickly thrown out the window and had to be changed.”
Michelle also experienced a feeling of grief, wondering “How is this going to impact him? Is he going to be able to get married? I mean he’s three, and I’m thinking about can he get married?! Can he live on his own, can he be independent! All these uncertainties go through your head.”
“There were two diagnoses that hit me and I just thought, oh my gosh, I don’t know anybody. I don’t know anybody in this position. I’m alone. I’m a mum and I have my husband and we’ve got each other – but that’s it. We’ve got no support in this space.”
We asked Michelle what led her to Irabina Autism Services.
“I can’t remember who referred me or where I got put on, but I got told Oscar needs to go to Irabina, so we had our intake appointment but there was a waiting list back then. It was going to be 6 months or so before we could get Oscar into the Readiness for School program.”
“I wasn’t coping – the lovely intake officer saw that – I just burst into tears when I got there and said ‘I don’t know how to parent my son’.”
Oscar had a very limited vocabulary and was having a lot of meltdowns. “I didn’t understand him and he was trying and he was frustrated and he wanted to tell me what he wanted and I didn’t know. It was just this cycle of stress and anxiety in trying to figure out each other.”
Thankfully, Irabina was able to help.
“The intake officer was so lovely and kind. She said, ‘Would you like to see somebody? Talk to somebody about some strategies for how you might be able to handle your parenting with Oscar?’.”
“I can’t remember how many weeks it was, but I came in every week. and I’d talk about the things I was struggling with. The psychologist would then help me with some strategies, and I’d be able to go home and then the following week I’d say ‘Yes this worked, no this didn’t’ and she’d help me with cards, PECS, visuals, setting up things to create routine in the household… I just thought, ‘Oh, finally! I feel like I’m kind of navigating this space for the first time in months’.”
“That’s where my absolute love for Irabina came from, because I honestly don’t know what I would have done without them. I was at my wits end at that point as a parent.”
From that point onward, the path forward became much clearer for Oscar and Michelle. With understanding growing between the two, Oscar went from strength to strength. He has since represented Victoria in the Junior Special Olympics, winning a gold, three silvers and a bronze, despite being the youngest athlete and competing against 16 year olds.
Michelle credits Oscar’s growth to early intervention and the social skills groups he attended at Irabina, “From a kid who couldn’t even balance, he was running 400m, 100m, 200m, long jump and we just stood there and thought, ‘Wow, how far has this kid come?’.”
From such a lonely, uncertain place, Michelle says it took throwing her expectations out the window to learn to “appreciate everything”.
“Every milestone. Every little thing that they do, you see in their faces and they’re so proud of what they’ve done. It doesn’t really matter what it is. It could be brushing their teeth independently for the first time. It could be showering for the first time.
“Those little faces that just acknowledge that they’ve done something – that’s where you get the joy and that’s the beautiful part of it. You have so many moments, and it’s wonderful.”
For Michelle and husband, Andy, it was a no-brainer to do more to help other families and children living with autism. Originally an ultra-runner, Andy decided to start running to raise money for autism, running 100km in the Blue Mountains and managing to raise over $15,000. Recognising that they were onto something, but also that Andy couldn’t keep “doing stupid things”, they went through the painstaking process of creating the Oscars100 charity and developed the Hut2Hut race.
Michelle says they decided, “let’s use this as a platform for raising funds and get people involved. Not just to raise funds but also to raise awareness and really talk to people about autism and disability and what they can do.”
Since then, the Oscars100 Hut2Hut race has grown into a huge event, attracting runners from all over the world, helping to raise funds and awareness for autism.
With COVID-19 continuing to impact many services and events, Oscars100 has turned to Telehealth to deliver their newest initiative, a special program just for siblings of children with autism.
Partnering with Irabina Autism Services, Archie’s Club (named after Oscar’s little brother, Archie) meets weekly online, providing a safe, supportive environment for kids to expore their feelings, make new friends and learn about autism.
Completely free thanks to the financial support of Oscars100, Archie’s Club filled up within a matter of days, with a long waiting list of parents and carers keen to enrol their children when the next program begins.
Michelle hopes to continue supporting families affected by autism, saying, “I’m just so thrilled that we’ve been able to work together to make that happen. It’s so exciting.”
Irabina Autism Services thanks Michelle Payne and Oscars100 for their continued friendship and support. Watch the full interview.
Oscars100 aims to support autistic children and their families through fundraising for, and partnering with, relevant community organisations. Primarily this will be achieved through the completion and organisation of endurance events and challenges supported further by merchandise sales. At Oscars100 we strive to build a sustainable business that can offer a pathway to employment for autistic children with a focus on respect, creativity and innovation.
Oscars100 is an organisation committed to improving the lives of children living with Autism.