Thousands of New Zealand children could be affected by Fetal Alcohol Spectrum Disorder Spectrum (FASD) and one Taranaki mother and Tui Ora staff member is advocating nationally for families to have a voice.
Claire Gyde, accountant at Tui Ora, is the mother of a son in his twenties diagnosed with FASD. Since 2012 she’s been battling to raise awareness, education and co-ordination at a national level.
One key goal is to have the disorder, which results in brain damage of foetus after being exposed to alcohol in utero, recognised as a disability.
“It opens up the pathways to service provision,” she says, which means those diagnosed can receive help and support to live as independent a life as possible.
“However, I’m conscious that service providers won’t know what to do if we get an influx of people so there also needs to subsequent funding to carry out systematic training.”
The disorders are a group of conditions with effects including physical problems and problems with behaviour and learning. Often, a person with an FASD has a mix of these problems.
Symptoms vary and often depend at what stage of the pregnancy alcohol was consumed, hence the use of the word spectrum.
“For many of those with FASD, there is an inability to plan ahead and connect consequences with actions. They can be emotionally dysregulated which makes them volatile…they often have memory issues and can’t recall events in sequence which looks like they are lying. They can struggle to pay attention and have spiky learning patterns so appear to have heard something one day and forget it the next day.
”These symptoms are frustrating for everyone working with individuals with FASD and it takes an informed change in mind-set to understand and help. That mindset change is knowing that these presentations are a result of a damaged brain. They are not wilful actions.”
The most high-profile case in NZ is Teina Pora.
After Claire’s son was diagnosed at age 14 she started researching the topic but little NZ-based information was available and no national support group existed. So, within a few months she had set one up, commissioned her husband (a bone carver) to create a carving they could sell to raise funds and helped create the byline: ‘With shared strength, courage and wisdom those with FASD can achieve.’
The network is called FASD-CAN (Care Action Network) with packs provided for parents, a website set up and workshops held annually. This year it is to be held in Wellington on September 7, with details on the website www.fasd-can.org.nz(external link)
Claire and her husband adopted their son but judgement weighs heavily for some families. “For biological mothers there’s an immense amount of guilt and we as an organisation don’t endorse any kind of blame being laid at the feet of mothers. Often, they have had a drink before they know they are pregnant.
“Unfortunately, it’s New Zealand’s drinking culture. I think we need to be more mature and work out how to support people rather than make them feel worse.”
NZ figures on the number of people afflicted aren’t known, but overseas the estimates are 3% of live births. In NZ, professionals believe the figure could be higher, perhaps around 5% which means out of 70,000 annual births, 3000 children could be affected. “Over a 20-year cohort that’s 60,000 children and young people,” says Claire. “It is a huge and largely ignored problem in Aotearoa.”
The staggering estimate means that at a national level she is a strong advocate. An action plan laid out by the Ministry of Health three years ago is completed but with disappointing results so Claire continues to work alongside professionals, policy makers within ministries together with rallying the support of the Children’s Commissioner Andrew Beecroft and the Disability Commissioner Paula Teroreiro to raise awareness and push for its disability.
On Monday September 9 Tui Ora hosts a workshop for health professionals and educators interested in learning more. It’s also encouraging all staff to wear red shoes, an international campaign to highlight awareness. https://redshoesrock.com/about/(external link)
This event to inform and highlight FASD will be held at Tui Ora in Maratahu St, New Plymouth from 9am – 11am with refreshments provided and the panel of speakers:
- Kiriata Stuart – Researcher – discussion on research into young Māori women drinking during pregnancy (prevention focus)
- Dr Raimond Jacquemard – Consultant Paediatrician – discussion on diagnosis (identification focus)
- Claire Gyde – Lived experience (intervention/working with whānau focus)