COMMUNITY eNEWSLETTER

After a few difficult years trying to have a baby, Jamie was born in 2012. From the moment he arrived he was absolutely beautiful, and from the moment he arrived, I also knew something was different.

I couldn’t have told you he was autistic, but deep in the pit of my stomach something felt off.

I would sit for hours gazing at him, waiting for that shared interaction and connection to happen, but it didn’t. Instinctively, I learned to join Jamie in his world, on his terms and somehow, that was enough for him.

Jamie was never typical in his development. He was the busiest, most energetic little boy imaginable. He wanted to sit upright at seven weeks, stand at six months, and when he started running at twelve months, we never caught him again!

Although Jamie seemed bright and physically capable, he didn’t develop language, didn’t respond to his name, and seemed disconnected from the world around him. By the time he was eight months old, I knew something was wrong.

Doctors told me I was overreacting. They told me to wait. They told me that boys develop slowly and every child is different. But the feeling in my stomach only got stronger. At 21 months old, Jamie was formally diagnosed with Autism Spectrum Disorder and Global Developmental Delay.

I still remember sitting across from the psychologist after the diagnosis. I was handed a binder full of therapy recommendations and next steps. Then she said something I have never forgotten. She told me that many children diagnosed like Jamie may never speak, may never become independent, and may require lifelong support.

And so began our journey with therapy. Speech therapists, occupational therapists, behavioural therapists, gut specialists, restrictive diets, apps, visual schedules, programs, equipment – we did it all. Jamie received every therapy and intervention we could possibly access. We turned our home into a sensory gym. We built our entire lives around trying to help him.

Looking back now, I realise something difficult. The therapy was often more for me than it was for Jamie. I think I believed that if I worked hard enough, loved hard enough, researched enough, organised enough, I could somehow rescue him from autism.

But autism is not something you rescue a child from.

By the age of five, Jamie’s world had become increasingly difficult. He experienced violent meltdowns, extreme anxiety, self-harm, sensory overwhelm and complete emotional dysregulation.

As his mum, all I wanted to do was hold him and calm him. But when Jamie was distressed, he would often hurt the people closest to him because he had no other way to communicate how overwhelmed he was, just trying to tell me, “Mum, I’m not OK!”

The only thing that consistently brought him joy and regulation was music, Disney shows and his iPad. And yes, Jamie has destroyed more iPads, televisions and singing Santa toys than I can count. At one point I was buying iPads three at a time. People would say, “Stop replacing them, that’ll teach him.” But autism doesn’t work like that.

At age five, we also received another label – Level 3 Autism.

I remember hearing those words and suddenly realising school was approaching and Jamie wasn’t ‘getting better’. I hadn’t really thought about school until then because somewhere deep down I still believed we would somehow be okay by the time Jamie was school ready.

But we weren’t. At that time, the only schooling option available to us was the support unit in the public school system. I tried to remain optimistic. I wanted so badly to believe Jamie would be understood and supported there.

On Jamie’s second day of kindergarten, he fell face-first into a steel bench and ended up in hospital needing stitches. His teacher handed me his teeth. Things didn’t improve from there.

The phone calls started: “Please come get him.” “He’s having a meltdown.” “He’s hurt himself.” “He’s run away.” “He’s broken something.” “He’s hurt someone.”

I remember finding my child asleep on the floor in a foetal position after exhausting himself emotionally. I remember defending him constantly. Trying to explain that he wasn’t naughty, he wasn’t violent, he wasn’t manipulative. He was autistic.

Eventually Jamie ended up in what felt like the ‘too hard basket’. And when people don’t know how to support autistic children, the answer often becomes medication. As the behaviours escalated, so did the medications. I watched my beautiful little boy slowly lose his spark. He became medicated, exhausted and misunderstood. I felt like I was failing him.

Around this time, colleagues told us about Giant Steps and I applied immediately. Months later we were told Jamie was eligible but there were no places available. Still, I held onto hope.

By Year 5, we had exhausted every available option in the public system. Jamie was described as aggressive, dangerous and vindictive. He was ten years old, profoundly autistic, non-verbal, over-medicated and completely misunderstood.

At the end of one particularly devastating meeting, the school explained they had developed strategies to protect themselves from Jamie. That night, through tears and complete desperation, I wrote to Giant Steps again, begging for help.

Then something extraordinary happened. I still remember exactly where I was standing when I got the call offering us a place. For the first time, Jamie was surrounded by people who truly understood him. People who didn’t blame him for his autism. People who saw his abilities before his limitations. People who respected him. People who genuinely cared about his happiness and wellbeing.

Giant Steps has changed our lives. Jamie is safe, he is happy and he has a voice. For families like ours, that means everything.

One of the hardest parts of this journey is eventually realising that autism is not something that disappears. There is no miracle cure, there is no shortcut, it simply changes over time. Some seasons are easier, some are harder. But the love you have for your child keeps you going even when you think you have absolutely nothing left.

Last year we faced another challenge when Jamie experienced his first seizure. I found him sitting upright on his bed, twitching uncontrollably, and genuinely believed I was watching my child have a stroke. It was one of the worst moments of my life.

Later that evening, I called Dr Helen Appleton who leads our clinic team and she said to me, “We are here for you, Tina. Whatever you need, whatever time it is, we will get through this together. You are not alone.”

That is Giant Steps. Not just education, not just therapy but genuine human care.

Building a place like Giant Steps takes extraordinary people, enormous resources and significant funding. With your support, children like Jamie have the chance to access this kind of life-changing care. And as a mother, I can tell you, there is nothing more important than that.

Tina Papoythis