The National Organisation for Fetal Alcohol Spectrum Disorders Australia chair Cheryl Dedman has met hundreds of people in her role over the past four years.
She considers each meeting a chance to share some positivity and to acknowledge all the hardships people go through, either living with or caring for someone with the disorder.
Mrs Dedman is a passionate advocate, but also one with empathy.
She’s been in their shoes.
Four years ago, Mrs Dedman was yelling into the void trying to find an answer for her adopted son.
He was given an autism spectrum disorder diagnosis but even with management, his symptoms were worsening.
After going through their own process of attempting to find a FASD diagnosis and being supported by copious amounts of research, Mrs Dedman was still being knocked back due to the intricate criteria of diagnoses.
She came to her wits’ end.
“It got so extreme I Googled, ‘help for FASD’ and I came across NOFASD, so I made a call and from that moment on, I felt like I'd landed on our planet where we belong,” she said.
NOFASD is a not-for profit organisation that works to support families living with the disorder; Mrs Dedman was able to find her son’s diagnosis with the organisation’s support.
But more than just the diagnosis, he finally had access to interventions and management tactics.
Mrs Dedman and her family aren’t alone in their journey.
FASD is a life-long, brain-based disorder caused by prenatal alcohol exposure.
It is the leading cause of birth defects and developmental and learning disability worldwide. It can present as poor memory, hyperactive behaviour, speech and language delays and attention deficit.
It can manifest differently, making it difficult to recognise and harder to diagnose.
It is considered an “invisible disability” — when children and adults have no visible signs, the condition often isn’t picked up or will be classed as something different. This often escalates behavioural problems, due to ineffective strategies.
September 9 marks International Fetal Alcohol Spectrum Disorders Awareness Day, being on the ninth day of the ninth month of the year, it signifies the nine months of pregnancy.
“Effects can occur at anytime during a pregnancy, there are so many myths surrounding FASD,” Mrs Dedman said.
“The day is about trying to raise awareness, which will lead to education, which will hopefully then transfer into support, because that’s what people living with FASD and those caring for them need.
“Because sadly, that support is missing.”
Mrs Dedman said International FASD Awareness Day highlighted the difficulties of living with the disorder but also shone a light on how appropriate interventions can lead to positive outcomes.
To observe the day, NOFASD encourages people to wear red shoes or red shoe items in support of not only those living with the disorder, but carers and families as well.
“Support for these warriors, who pour their hearts and souls into providing the best for their loved ones, is generally a huge void in their lives,” she said.
For more information, go to https://www.nofasd.org.au/ and to be a part of the red shoe movement, visit https://www.nofasd.org.au/red-shoes-rock/