Mrs Boney’s teenage son, who she’s cared for since he was four-days old, was born with foetal alcohol syndrome disorders (FASD) and since then has displayed a range of developmental problems.

Mrs Boney said her good-looking son is healthy and lives a happy ordinary family life so people often don’t think he has a disability.

In fact it wasn’t until he started school that Mrs Boney realised her son’s behaviour was different to her older children.

“He just wasn’t able to follow direct instructions or pick up on things as easily as the other children. He was always restless and had a short attention span,” she said

After researching her son’s behaviour, and knowing his family history, Mrs Boney said it became clear he had FASD, which can manifest in a range of physical, developmental and/ or neuro-behavioural characteristics.

“I knew I had to understand his behaviour and where it was coming from to parent him,” she said.

Mrs Boney said before his diagnosis there was an expectation from teachers that he should act according to the developmental age of his peers but it soon became clear he needed more support in the classroom.

“Children like him fall between the gaps in the education system,” she said.

Mrs Boney said she’d like people to be made aware of the problems associated with drinking alcohol while pregnant.

“I think we haven’t got a very good social campaign in the community informing people the impact alcohol can have on unborn children,” she said.

“A lifelong disability can result from it.

“It’s really tragic to see a woman pregnant and drinking but sadly the Australian culture is entrenched in a culture of drinking.”

Mrs Boney said it’s not just ordinary people who know little about FASD, even the medical and education sectors are ill-informed and obtaining a formal diagnosis of the condition is difficult.

Mrs Boney and fellow Orange Wiradjuri woman Lynne Foley, whose grandson has FASD, are telling their stories to community groups in an effort to increase the awareness of FASD in the community.

This week the women will appear in a video presentation about FASD that’s being run by the Bourke Aboriginal Health Service called Challenge to Bourke.