A SOUTH-AUSTRALIAN grandmother who has been hailed an ‘unsung hero’ for her tireless work addressing the impact of fetal alcohol spectrum disorder said she hopes the recognition means less children will be born with the disability.
Sixty-seven year old Sue Miers from Normansville has won the Unsung Hero Award at the national HESTA Community Sector awards for her two decades of voluntary work supporting families struggling to manage and understand FASD.
Sue is the founder of the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD).
“There is still not a lot of understanding about FASD in the wider community and in our education system,” Sue said.
“Parents and carers often struggle to get their children understood because these children actually have undiagnosed brain damage.”
It can be a very lonely journey and having other parents with lived experience to talk to can be really helpful.
She said there is still a lot of stigma around the condition – which is often just put down as bad behaviour - and that talking about the issue is key, as well as educating the public about prevention.
“It can be a very lonely journey and having other parents with lived experience to talk to can be really helpful,” said Sue, speaking from experience.
She has been caring and supporting her now adult foster daughter who has partial fetal alcohol syndrome (pFAS) for the past 34 years.
“She came to live with us as a toddler, and I already had three other children. I thought I was reasonably experienced raising children, but my normal parenting wasn’t working with her.”
When her daughter was 10 she read about FASD in a magazine and recognised the symptoms immediately.
“But I still got nowhere. Because my daughter didn’t have the physical symptoms (only one-in-10 have the facial difference) no-one was prepared to diagnose her.”
Sue struggled on for years, and eventually got a diagnosis in Canada. “I remember thinking, why on earth should we have to go over there?”
And so began Sue’s campaigning, sending letters about her family’s experiences to politicians and organisations.
“And here I am now, 20 years on. I’ve been jumping up and down all that time. But FASD has only really started to be recognised in the last six or seven years and in Australia diagnostic guidelines have only been introduced in the past two to three years.”
Although Sue retired from the NOFASD board in 2015, she continues to volunteer and provide support to parents, carers and employees working with those living with FASD.
She is also now a carer for her daughter’s 10-year-old daughter and grandmother of seven.
Sue said while accepting the win was “all a bit overwhelming” the prize money would help NOFASD expand their support services and advocacy.
“You don’t every expect recognition but at the same time this is really great for raising awareness of this really important issue.
“We want to increase the resources and support we can provide parents and children, and at the same time keep raising awareness, which will hopefully lead to less children born with FASD and more positive outcomes for those who are living with FASD.”
Winners from NSW, SA and WA were recognised for their life-changing work and inspiring advocacy at the 2018 HESTA Community Sector Awards in Sydney on October 29.
Other winners were WA-based VisAbility which picked up the Outstanding Organisation Award for its ROAM project team based in Victoria Park which delivers mobility and orientation services to people who are blind or visually impaired using real-time, remote video assistance.
NSW organisation End Rape on Campus Australia won the Social Impact Award for their ground-breaking advocacy, helping to lead the fight to end sexual violence in universities and residential colleges.
What is foetal alcohol spectrum disorder?
- Fetal alcohol spectrum disorder (FASD – pronounced ‘FAS-dee’) is the term used to describe the lifelong physical and/or neurodevelopmental impairments that can result from fetal alcohol exposure.
- FASD is a condition that is an outcome of parents either not being aware of the dangers of alcohol use when pregnant or planning a pregnancy, or not being supported to stay healthy and strong during pregnancy.
- Alcohol can cause damage to the unborn child at any time during pregnancy, even before a pregnancy has been confirmed.
- The level of harm is dependent on the amount and frequency of alcohol use.
- The effects of FASD vary and it is sometimes referred to as the ‘invisible disability’ as it often goes undetected.
- FASD is often not noticed until the child reaches school age when behavioural and learning difficulties become more evident.
- The majority of children and adults who have FASD live with significant cognitive, behavioural, health and learning difficulties, including problems with memory, attention, cause and effect reasoning, impulsivity, receptive language and adaptive functioning difficulties.
For more details go to www.nofasd.org.au or phone 1800 860 613.
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