Clinic aims to give answers
Published at: 10 Dec 2018
A new clinic dedicated to diagnosing fetal alcohol spectrum disorder will provide much-needed support for regional parents dealing with the condition.
The new Goulburn Valley Health facility will provide a one-stop shop for those seeking diagnosis using a multi-disciplinary model.
In the past, parents who were seeking a diagnosis were required to make multiple appointments and visits to doctors in order to get answers. Often, specialists would be located in another regional centre or in metropolitan areas, meaning patients and their parents could spend a week attending different areas to attend appointments.
For children with FASD, travelling can be just one of the many things that triggers poor behaviour.
The clinic will also work to break down the barriers and create awareness surrounding the disorder, which often has a stigma attached to it.
The reality is, many mothers simply do not know that absolutely no level of alcohol is safe to consume while pregnant or simply do not have the social support to cease drinking alcohol while pregnant.
Mothers often feel incredibly ashamed and guilty and this can also act as a barrier to seeking diagnosis in what was previously a hugely complex process.
It was unclear if Shepparton was chosen as Victoria’s first location due to the number of local cases of FASD.
Experts said there were a number of factors that resulted in Shepparton housing the clinic including accessibility for regional people.
For Greater Shepparton-based mother Susan*, caring for her child who was diagnosed with fetal alcohol spectrum disorder has become a 24/7 job.
Susan faces daily challenges, both home-schooling and caring for her son, who has several developmental and behavioural problems.
But perhaps Susan and her partner’s biggest challenge was actually figuring out why their son was so different.
‘‘We noticed differences at a young age,’’ she said.
‘‘But it wasn’t until toddlerhood that we noticed he was not getting out of toddlerhood.’’
Initially thinking their child may have autism, Susan was given a diagnosis of moderate autism but she knew it did not explain her son’s behaviours.
‘‘The strategies we were using for autism were making it worse; he became really overwhelmed,’’ she said.
Still seeking answers to their ongoing questions, it was not until a chance encounter with someone on a train who encouraged Susan to watch a show on FASD.
Within two minutes of watching the documentary, Susan had to turn it off.
‘‘It was terribly confronting because I kept thinking what is the future going to be for our child,’’ she said.
At the time, with no facility in Victoria to diagnose FASD, Susan was given acknowledgment from a psychiatrist.
‘‘So we trundled on for two to three years until it became really hard to function,’’ she said.
‘‘I contacted NOFASD (the National Organisation for Foetal Alcohol Spectrum Disorder) and I got a life-line.’’
Soon Susan had begun making changes around the home to make life more bearable for the family.
Locks were added to every door in the house, including the dishwasher, making the home safe from risk and absconding.
But there were still many problems outside of the home where Susan’s son would often become overwhelmed.
Finally, the family travelled to Perth to seek an official diagnosis, which was an incredibly big challenge in itself.
Now in his teenage years, Susan said they saw a regression in their son’s behaviour and development at about 10 years old and now shespend all her time equipping the family with strategies to deal with his behaviour.
‘‘It’s like having pool-side supervision all of the time,’’ she said.
‘‘It’s like being his second brain; you’re thinking about how something might affect him differently.’’
Susan said they must consider things that would trigger her son’s behaviour, which could range from colours and preservatives in foods to overwhelming sensory information.
‘‘Technology is a huge problem,’’ she said.
‘‘We carefully source books that won’t have concepts that are difficult to understand.
‘‘I’m doing a constant risk assessment.’’
Susan said she had heavily relied on having a good relationship with her GP and paediatrician and she was committed to setting up the best future possible for her son.
She said having a child with FASD had also impacted on their social lives as well as her own ability to care for herself.
With a supportive group of close friends, Susan said she did the best she could to find time to relax and self-care.
‘‘Now I see things through a different lens,’’ she said. ‘‘It is hard what we deal with.’’
But Susan said tshe worked hard to find positives from their child, who was caring and empathic.
‘‘It’s seeing magic through his eyes,’’ she said.
‘‘Our love for him has no end.’’
Shepparton now houses Victoria’s first clinic solely dedicated to treating Fetal Alcohol Spectrum Disorder which officially opened yesterday.
The facility will run through Goulburn Valley Health and was opened in conjunction with the PATCHES Paediatrics Group in Western Australia.
GV Health’s paediatrics clinical director Dr Dan Garrick said the clinic would use a multi-disciplinary model.
‘‘That works well and it’s necessary. It is made up of neuro-psychologists, speech pathologists, occupational therapists, paediatricians, and a co-ordinator who works across all those disciplines putting it together,’’ he said.
‘‘Having all these specialists available in a one-stop clinic format makes assessment much smoother for families who previously would have had to travel to Melbourne and attend multiple appointments.’’
Dr Garrick explained FASD was an umbrella term for a range of disorders which resulted directly from prenatal exposure to alcohol.
‘‘These are complex medical, developmental, social, psychosocial issues that need to be brought together and underpinning that is getting a diagnosis so that we can make a difference in how we go about improving the lives of the children and their families,’’ he said.
He said there was no safe limit when he came to pregnant women consuming alcohol.
‘‘It’s quite a challenging area, both in terms of the medical understanding and well as the social side of coming to grips with this concept and problem.’’
Dr Garrick said FASD affected some brain and nervous system development as well as some physical features.
‘‘What we find progressively is that these children have significant problems in the areas of relating, behaving, sensory system and of course cognitively and intellectually.’’
PATCHES clinical neuro-psychologist Candy Cheung said there was often stigma surrounding FASD and a lot of blame and guilt sat with the mothers, but said the clinic was all about a big-picture approach.
The clinic will focus on patients up to 16 years of age, taking on two clients per clinic with enough funding to operate one day every two months.
Clinical co-ordinator Kim Cowen said there were a number of reasons why Shepparton was chosen as the first Victorian location.
‘‘It has evolved over time with collective interest,’’ she said.
‘‘It’s been progressed by people who understood our region does have problems.’’
She said the clinic would play a vital role in treating some of the Goulburn Valley’s most vulnerable children.
*Not her real name