The struggles of raising autistic kids in the provinces

Lucy Moses is mum to not just one autistic child, but four daughters - and that presents overwhelming challenges living in the isolated settlement of Tuai, in Hawke's Bay.

"It is tough - they all have their own uniqueness and they're all different, none of them get on."

 Although remarkably calm despite the sheer chaos in her household, Lucy felt alone in her struggles until she went to a meeting for parents of children with special needs.

"You actually think you're the only one in the world with a child with autism. But that first meeting there were heaps of parents."

Kura Precious Ones is a support group set-up by Wairoa mum-of-six Susan Tipuna. Susan's own difficulties raising her seven-year-old autistic son Kiwa was the motivation to start the group, who meet once a month.

Many of the parents who attend have autistic children. They share their experiences, frustrations and swap advice and stories. It's a safe space where they can let off steam, so they can be at their best to look after their kids who have such complex needs.

"Some of the children are being fostered because the parents can't manage anymore. Having one child is tricky, but having lots of children and one with a special need is actually really tiring," says disability advocate Dorothy Taare-Smith, who helped Susan get the group up and running.

autism group
Photo credit: The Hui

Currently, one in 68 New Zealanders are diagnosed with autism - but it's not just the developmental condition Kura Precious Ones caters for, with children with conditions like Down's syndrome and foetal alcohol syndrome also attending.

Studies show that the stresses of looking after a child with high needs like these are similar to that experienced by a combat soldier.

"I always think of all those families and their stories that we share within that time and think there's worse scenarios than what I'm going through, so harden up," Susan says.

Susan's down-to-earth approach was recently recognised recently, named the supreme winner at Trustpower's Community Awards. Her prize will go towards empowering parents in other remote communities who are in desperate need.

"Susan's shown that you actually don't need the experts to come and tell you how to I guess raise your child. As long as you've got a strong community and you've got friends and family who love you, then it will get done," adds Dorothy.

The Hui

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