“What is his name, that boy by the tyres? The boy with the tangled-up, twisted-up wires?”
“His name is Fergus, he’s fairly well known. He plays in the park, but always alone.”
Fergus Ray Franklin is wired differently to the other kids. He passes time alone, swept up in his own imagination. He spins, he flaps and hums and stares at the clouds, while his peers play together nearby.
Fergus is fictional; a beautifully drawn, fully realised character in the children’s book, Fergus and Delilah. But in the northern NSW beach town of Byron Bay, his real-life inspiration is too learning to navigate the world around him.
That boy is Hugo, the seven-year-old son of the book’s illustrator, Míša Alexander.
“He’s an amazing little boy. He’s very happy and has an incredibly positive predisposition, which really helps him in the world because his communication is really limited,” the mother-of-three told Mamamia. “He’s unable to request things that he needs. We still use a lot of sign language. But he smiles, he’s happy. He wants to interact with other people. He’s really growing.”
Hugo lives with moderate autism spectrum disorder and a learning disability, which significantly impacts his understanding of the world around him. While she's making the most of educational and community resources to help her son integrate, the Canadian-born mum is also seeking to help shift the way in the world understands him.
When he was at preschool, she created and distributed flyers explaining why her little boy seemed different, why he'd stand in the corner and flap his arms and make strange noises, why he wouldn't talk.
"The teachers told me that at the beginning of the year there was one little girl that was really scared of him... After I handed out the flyers, she became one of his closest peer group people in preschool. They hugged when they saw each other," she said.
"It really broke down the barriers between the children, the parents, the teachers, Hugo and myself. It became more transparent and there was more compassion, because they actually understood what was going on."
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Seeing the shift in perceptions among Hugo's peers was a tipping point for Míša. But as he faced primary school, with 300-400 kids, she knew a pamphlet wasn't enough. Besides, he was one child, in one school. One of the more than 136,000 Australians under the age of 25 living with ASD.
"I had Hugo in an intervention system where libraries and materials were available, but I found nothing that targeted a mainstream audience," she said. "There's lots of manuals and not-so-great books. I just thought there needs to be something for that normal kid down the road to really help them understand."
After placing a call-out in the local paper, the former graphic designer found special needs educator Erin Knutt, and together with the help of an ING grant and money donated via a crowd-funding appeal they created picture book, Fergus and Delilah.
More than 2000 copies have been sold in eight months, and even its inspiration is benefiting from its message.
"Last year, I made it clear that I wanted Hugo's school to read that book in every class, and they did. So now they all know Hugo, they know that he's got a bit of a quirk. And it's just accepting and it's loving," Míša said. "To see the effect is just amazing, and I just hope that every child that has a disability or additional needs that they could have that in their school and they could see that level of support around them.
"That's what's feeding the fire."
The book is just the beginning for the Fergus and Delilah story.
Míša and Erin have achieved not-for-profit status, and hope this will help to push for policy change around access and inclusion for special-needs students, so that local primary schools have the resources and provisions to be accessible for everybody. They also aim to create multi-platform educational resources for children to learn about what it's like to live with special needs and to create more books, ones that appeal to children of all ages.
It's Míša's way of helping undo the social prejudices around disability and difference.
"I believe that I was the product of stigmatisation around disability. I'd had very little to do with it as a child and teenager; I didn't have anyone around me with disability. I remember saying to my husband, 'I think if I had a child with disability, I'd have to give them away. I don't think I'm equipped for it'."
When Hugo was diagnosed with autism at two years old, the reality struck with force.
"It was horrific. I just remember falling into an absolute heap of depression," she said.
"I thought what's my life going to be like; what's his life going to be like? It was a horrible dark pit. Hugo cried and cried all through the night, so I was so sleep-deprived and I felt like I wasn't getting anything back from him. All the sign-language, the intervention, the occupational therapists, everything else, but nothing back.
"There were times I thought, man, I cannot do this anymore. This sucks. But [in the last couple of years] he's really come in leaps and bounds, and my love for him has just exploded. Which is a really beautiful place to be, because that's how you want to feel about your child."
In the book, Fergus' peers ultimately find their own way to relate to him, the boy with the tangled-up wires. Because of it, the same has happened for Hugo and for scores of other children.
"I'm hoping that we can put a little dent in society and make it a little bit better, certainly with a younger generation of children having that compassion," Míša said. "And that will keep moving with them through life and that will bring a greater good."
It only took one, to try a small spin, for others to see, they too could join in.
They now were a team, all playing as one wired-up different and yet having fun.
Too much noise and not enough time?