COMMUNITY eNEWSLETTER

Roxie is non-verbal. She doesn’t speak, and for a long time, she had no reliable way to communicate beyond a few sounds and hand-leading us, wordlessly, to the things she needed or wanted. So how do we tell the story of a child who can’t tell her own? How do you speak for someone who doesn’t have a voice in the way the world expects? Truthfully… you can’t, not fully.

We can try to piece together her story… From the way she laughs when she hears her favourite song. From the way she smiles when her swing lifts off the ground. To the way she puts our hands over her ears when she’s overwhelmed, and the way she stomps her foot when she’s frustrated. We can tell you how hard it’s been. And how beautiful.

Roxie is 7 years old – she is radiant, resilient and deeply affectionate. She loves the beach, puzzles, books and music, especially music.

Her entry into the world came with a few bumps – a week in the NICU, some concerns about her feeding, hips and tongue. She wore a harness for her first year of life. By the time she was turning one we were starting to feel like the dust had settled, that we were out of the worst, like we could breathe again. And then everything changed.

Shortly after Roxie’s first birthday, and expecting our second child, Roxie was diagnosed with Tuberous Sclerosis Complex (TSC) – a rare genetic condition that most people, including us, had never heard of. We were told not to Google it. We Googled it. We wish we hadn’t.

TSC brought with it epilepsy, brain tumours, autism, and severe intellectual disability. In addition to this it created an incredibly uncertain future as TSC typically results in the growth of tumours that impacts the brain, heart, eyes, lungs, kidneys and skin as well as a host of other less significant issues. With each wave of seizures, we watched our daughter fade. She lost the few words she had. She stopped making eye contact. She stopped smiling. And in the most painful way, it felt like we were losing parts of her – pieces we didn’t know how to get back.

I remember walking down the street with her or trying to. She’d drop to the ground in distress, and people would stare. We couldn’t go anywhere. We couldn’t leave her for a moment. And then, one day, we got a call from her preschool. She’d been asked to leave. No warning, just, ‘She’s too hard’.

Too hard. She was four.

We were already hanging on by a thread – juggling a baby, work, therapy appointments, the financial strain of in-home care. We were tired, grieving the parenting journey we thought we’d have. And we were lost. We needed help, and we had no idea where to turn.

And then… we heard about Giant Steps.

We reached out, not really expecting much. But when we visited, they said something we’ll never forget, ‘We have other Roxie’s.” That sentence. We had never heard it before. Not once. Not from any school, any therapist, any support provider. They didn’t just say, ‘She’ll fit in’. They said, ‘She belongs’. And everything changed from that moment on.

Today, Roxie still faces enormous challenges, but she is no longer silent. She uses a communication device – her talker. She knows her alphabet, her colours, her numbers, her shapes. She labels the days of the week, requests her favourite songs at dinner, sometimes she uses it to tell us that she went swimming, or to the OT room at school. And every time she presses a button and her voice is heard, we feel like the whole world opens a little more.

Roxie now walks with us to the café, to the bush trail near our home. She’s learning to get dressed on her own. She eats with a spoon. She’s starting to use the toilet. And for the first time in her life, she has friends. They may not play with her in the traditional way, but they sit beside her, sometimes push her on the swing, and they know her name.

All of this – every single milestone, every moment of progress – has been made possible because of Giant Steps.

To support Roxie’s development, each new skill needs to be broken down to its smallest part. Each part often requires hundreds of hours of reinforcement, in multiple settings as often the skills don’t transfer from one location to another. It requires countless hours of printing and laminating to provide visual prompts, it requires musical triggers to help motivate her and assist her to understand where we are, or where we are going.

Roxie requires one on one support for pretty much all aspects of daily life. A child whose very existence is deemed too hard by so many. At Giant Steps she is not only welcomed, but also embraced, she is celebrated and truly supported in ways that work for her!

They have thought of everything. When she wouldn’t wear her glasses, her teacher made sure everyone in the class wore glasses too. When haircuts were too traumatic, the hairdresser came to school. When her behaviour at home became unsafe – pinching, biting, hitting – the Giant Steps Mental Health Clinic gave us tools that worked. Through all the challenging behaviours never, not once, has the team at Giant Steps given up on her. They meet her with patience, creativity, and deep respect. They see past the behaviours and respond to the need underneath. Their love and belief in her never wavers, no matter how hard the day.

Giant Steps has helped with sleep, with sensory regulation, with toilet training. They coordinated her therapies, connected us with specialists, and have helped us navigate the chaos of the NDIS. They’ve even created school holiday programs to keep Roxie connected to her favourite place. They’ve taken her bushwalking, swimming, horse riding – not because these are luxuries, but because they are lifelines for children like Roxie.

And they have wrapped us – all of us – in support. There are Mother’s Day and Father’s Day events. There are sibling days, so her little brother Teddy can feel seen too. There are therapists, teachers, clinicians, and more than anything, there is community.

There is also the hope that Giant Steps will be there for her future — for the unknowns that we still face. With the new Elanora Heights property, for the first time, we’re daring to imagine what the future might look like for her. That there will be a place for her to continue learning, connecting, and being part of something bigger than her diagnosis.

To everyone who supports Giant Steps, thank you. For showing up. For making a difference. For standing beside families like ours and saying, ‘You’re not alone’.

Rob and Mimi Rossano