We’re celebrating a decade of growth, development and support for those living with FASD, so we got in touch with some of those founding members to ask them about the early days of FASD-CAN – and to look at what has happened in more recent times.
FASD-CAN was incorporated on July 5, 2013 and became a registered charity two years later. It was created by a group of passionate people whose tamariki were living with Fetal Alcohol Spectrum Disorder – or suspected to be living with it. They had slowly connected with each other and became determined to find out more about FASD and to support other caregivers, parents and whānau along the way.
Christine Rogan, ONZM – FASD Pioneer
Claire Gyde – FASD-CAN Founder
The Founding Whānau – Tracey Jongens, Lisa Smith, Jaks Prichard
Dr Valerie McGinn – the Clinician
Dr Leigh Henderson – the Chair
What was your experience of FASD before you got involved with starting FASD-CAN?
I joined Alcohol Healthwatch Trust in 1996 as a Health Promotion Advisor. My experience at that time was as a development officer for a charitable health start-up (still in existence), after many years of working in sales and marketing. I was part way through a BA studying sociology and was a solo mum in my mid-forties when I started with AHW.
I had heard of Fetal Alcohol Syndrome but was initially involved with addressing harmful youth drinking. A colleague had spent seven years pioneering awareness in alcohol and pregnancy harm for the Trust. When she left later, in my first year, she handed me the baby! Primary prevention was the sole focus back then.
Was there a specific catalyst that brought FASD-CAN into being?
I recognised the need for connections very early on. I built and coordinated a multi-sector online network to link and inform people with an interest. One of the early struggles was getting FASD recognised and accepted across a generally sceptical medical profession. Denial and misunderstanding was widespread and those who did accept the science were for the most part willing to only recognise published data on the physical differences – facial anomalies and small stature – which we now know is only a small proportion of FASD cases. Many other knew better, but were too hamstrung by barriers to act on their knowledge. The hidden damage to prenatal brain development from alcohol exposure took far longer to gain understanding and acceptance, and many of those barriers are still in place. It required constant effort to maintain momentum and prevent slippage. Being connected to wider circles helps.
I viewed diagnosis as a pivot point for prevention and intervention. It was simply too difficult to prevent what remained obscure and hidden, and unethical to leave people misunderstood and stigmatised. The gaps were huge, but pursuing this eventually led to small numbers of multidisciplinary diagnostic training and service integration, enabling families to gain their own knowledge and understanding to improve lives. It brought the ‘invisible’ into the light. This is so important for reducing secondary harm and building connections for families.
Who did you have around you at the time and what was their input?
Prior to the establishment of FASD-CAN and working alongside its founder Claire Gyde and others, I worked to increase overall FASD awareness and that is where our yearly FASD Awareness Day comes in. In 1999, the late Bonny Buxton from Toronto inspired a small international group of us to start the ball rolling in our respective countries. Our first FASD Day that year focused on action to require warning labels for alcohol containers, resulting in a petition to Parliament and eventually some government support for the move – taking a mere 25 years to become mandatory (this year).
Through media advocacy, community and sector relations, conferences and workshops, collaborative projects, policy advice and resource development over the last two decades, the groundswell built.
I was fortunate to have great support from AHW to maintain my ‘Swiss army knife’ approach to health, enabling me to be an established point of reference across the board. Knowing how serious and preventable the harm was, and how marginalised and misunderstood FASD was, I simply figured there was no one who didn’t need to know!
I found it a waste of my energy trying to convince naysayers. I sought out and worked together with the willing! The people living with FASD were my inspiration and incentive to keep going. The strength of their raw and real experiences, and the trust between us, held me firm to the commitment of reaching and informing others who might be in a position to help. I used to describe this as ‘moving FASD from the margins to the mainstream.’ For many FASD is their key focus and invested far more sweat equity than me! It required and still requires, multiple champions at all levels of activity and usually a steep learning curve. I did my best to ensure each was well informed and supported along their own journeys. Doing that on behalf of FASD-CAN was a privilege.
How did you track down information on FASD when you first started out? What was your first lightbulb moment?
I benefited from evidence provided by the international pioneers, researchers and experts in the field, particularly the teams from Canada whose work to improve outcomes had received recognition and their government’s support over decades. Their generosity and support for our own mahi here in Aotearoa is legendary!
What were the biggest struggles you dealt with at the time?
The lack of supportive funding for this issue in New Zealand has multiple causes, but in my experience, FASD was considered too big (floodgate fear), too complex, too expensive and too stigmatising, and being outside the established status quo, too easy to ignore. What little funding was found were crumbs compared to the cost of FASD harm, but convincing otherwise was, and still is, a hard slog.
What do you remember as big steps forward?
Developing the FASD Action Plan was a positive and collaborative step forward, creating a bridge between the Crown and the people. It was aspirational in scope but in practice lacked standing to effect much change at the service provision level for those living with FASD. The continuation and growth of FASD-CAN is critical in this framework. It has had to fight too hard for status to receive even low and inconsistent funding. For such a serious and preventable harm proven over decades – both primary and secondary – this denial is shameful.
How far do you think we’ve come and what are the biggest challenges we face going forward?
The first recognition and documented harm from alcohol in pregnancy in Aotearoa came in the form of an 1874 petition to parliament regarding the devastatingly negative effect of waipiro on Māori communities. That we succeeded in achieving a warning label on bottles 150 years later, is little cause for celebration. It is a very overdue step, not a destination.
What’s your vision for the future of FASD?
Having recently retired, I humbly accepted colleagues’ nomination for a New Year’s Honour and was made an Officer of the New Zealand Order of Merit (ONZM) for my work. What a privilege! It’s gratifying to look back and see that yes, we did make some recognisable progress, and to see the mahi and collaboration continuing. That honour belongs to many, not just me.
Looking forward, I want the same as I have always strived for, that alcohol availability and harm be taken seriously in policy and legislation, an end to stigma and blame, coherent, collaborative and sustained action across the board to address FASD – not just words on paper – with whānau leading, contributing and benefiting. The knowledge and relationships to guide that work is in your hands. Let nothing stand in the way! Kia kaha.
What was your own experience around FASD before you began FASD-CAN?
My working life has mostly been in finance in the commercial/manufacturing sector. Most recently I worked as an accountant for a kaupapa Māori Community Health organisation and currently I am a business manager for a large secondary school in New Plymouth.
25 years ago, before we went to Russia to adopt our son, I researched the issues of trauma, neglect, attachment and malnutrion on children in orphanages. Through that research I also read an article on FAS. That article highlighted the physical signs of FAS but skimmed over the most devastating symptoms of pre-natal alcohol exposure. I recall receiving a photo of the little boy who would become our son and thinking he didn’t have any facial features of FAS ... and he doesn’t. Of course we know now that only a small percentage of those with FASD have the facial dysmorphology but all have varying degrees of brain damage.
Was there a catalyst that made you decide to form a support group?
Our son was diagnosed with ARND (Alcohol-Related Neurodevelopmental Disorder) in 2012. I remember meeting with the diagnostic team and not entirely understanding what they were telling us. The line I did hang on to though was, “you need to understand this is a significant impairment”. I went home and began (almost fanatically) researching. After a few weeks I emailed the diagnostic team and basically said, so where do we go now, is there some support? The answer, of course was, ‘well, no’.
About this time I was in touch with Christine Rogan at Alcohol Healthwatch and she suggested that I go with her to a conference in Canada. So, in March 2013 I went to Canada for a week with a fantastic group of professionals from around the country. This conference was an eye opener for me. Everything and everyone was so much further along in this journey than we were in NZ. I attended a dinner for caregivers hosted by NOFASD and they were talking about the ‘warrior mom’ – this was a bonding term and also a means by which they raised some money (they sold warrior mom themed goods such as necklaces, badges etc). This got me thinking about what a Kiwi version of this would look like. My husband was a bone carver, so I set him to work as soon as I got home!
[Note: Paul Gyde's resulting manaia koru bone carving became the emblem of FASD-CAN and is now the graphic part of our logo. There's more information about it here.]
Who did you have around you at the time and what was their input?
Christine Rogan was absolutely key to the beginnings of FASD-CAN. Following the trip to Canada she was always available at the end of the phone and we threw lots of ideas around. Dr Valerie McGinn was also heavily involved and very supportive of the idea of a national support network to help connect and strengthen families. Tracey Jongens and Lisa Smith were two parents who were also very active in the beginning as we ‘themed’ our group. My husband Paul was also quietly integral to the start of FASD-CAN as we only had the money to pay the incorporation fees through selling off some of his bone carvings.
How did you find tracking down information on FASD ten years ago?
Internet. Books. I remember reading Damaged Angels by Bonnie Buxton which was life-changing for me. Such a strong, loving woman writing about going through hell with her daughter. When I finished the book I emailed Bonnie and she sent a long response back telling me how things were for them now and how adulthood had brought some more stability. It was very hopeful. I also read Diane Malbin’s Trying Differently and made contact with her too. Her response and approach to FASD made sense although I do need to admit to not changing environment and parental approach as quickly as I should have. It is a difficult thing to shift. We are brought up and entrenched in a parenting style that is consequence-based and full of expectations of development of independence.
What were the biggest struggles you dealt with at the time?
Getting people interested was the biggest struggle. In the beginning it was just about connecting parents, offering parent to parent support. Being spread throughout the country meant that we relied on virtual connection and started the Facebook page. The issue we had is that whilst people signed up for the Facebook page, we didn’t always get them signing up to be members of the organisation. We needed more people to jump on board so that we presented as a credible organisation with a groundswell of need. With that, we felt we could advocate for FASD recognition at a national level.
It took lots and lots of door-knocking, letter-writing and begging for meetings. I worked out that it was about relationship-building and so connected with people like the Commissioners for Disability and Children by sharing my story at a personal level.
Alongside the struggle of bringing people along for the ride was the lack of funding. We sold some bone carvings which helped with some basic admin costs. We charged a small membership fee which helped with some travel costs. We received some small donations. It was a real struggle financially.
All of this was going on while our son was being kicked out of school, disappearing for days on end, doing drugs, being suicidal and extremely violent. So whilst I was needing to advocate for help for my own situation, I often felt I was pulled in to helping other families first. In hindsight, that might have been a problem. It burnt me out.
What do you remember as big steps forward?
Our first meeting with Ministry of Education felt surreal, but the reality was very little came from that other than getting an empathetic ear.
The FASD Action Plan was a huge body of work that we put a lot of effort into. It is a good plan and it brought with it a lot of hope that things were going to change. Sadly, the implementation of that Plan has been woeful. MOH just couldn’t get the cross-agency buy in. They often engaged with the wrong people. However, in the end, it was through this mechanism that FASD-CAN received the first decent amount of funding in 2021, so some good has come of it.
The other big deal for FASD awareness in Aotearoa was getting the backing of Paula Tesoriero (ex-Disabilies Commissioner) and Andrew Becroft (ex-Children’s Commissioner). They attended several meetings with us and MOH and became very vocal through the media. It has helped the cause immensely.
How far do you think we’ve come and what are the biggest challenges we face going forward?
Awareness of FASD is so much more than it was. I now work in a school and have had several conversations with teachers about FASD. This just didn’t happen when my son was at school – they chose to think he was just being defiant, even in the face of a diagnosis. The Justice sector has begun understanding FASD as a mitigating (or perhaps aggravating?) factor. At Government level, there seems to be a willingness to address FASD. However, putting ‘money where mouth is’ is yet to be seen.
There are pockets of really good work being done but there is also inconsistency across the country. I always say that a service is only as good as the person you strike on the day. Some individuals are fantastic, across all services – health, addiction, education, justice, MSD, etc – and then there is the flip side to that. At grass-roots level, I suspect many families will say they feel like not much has changed. It has. It definitely has but reaching those who need it most is very slow.
What are you doing now and what’s your vision for your new role?
I’ve been working with Oranga Tamariki since October last year. I’m advocating for FASD awareness in this role and ensuring that it is considered in all the work we are doing to set a Disability Strategy for the organisation. There is a real awakening to FASD at the top level of Oranga Tamariki, and an unmeasured understanding that FASD impacts many children in their care through Care and Protection and Youth Justice.
I consider this to be ground-breaking work, especially around making transformational change within a Government agency. It is a huge undertaking. I am hopeful that this model can reach out to other agencies/organisations and help put a disability lens across their mahi too. Individuals with FASD touch so many services/agencies it is important we get cross-agency collaboration. I’d like to be involved in making that happen.
Tracey is currently Head of Department at Te Aratai College in Christchurch, with a background in specialist teaching and as an RTLB.
Claire and I had recently met via email and phone, through another organisation we were in at the time. FASD was a very new idea for us both and at that time any connection around FASD was word of mouth. Separate to that, I had connected a year earlier with Christine Rogan and Valerie McGinn.
I spent most of 2012 searching books and anything I could get my hands on to learn about FASD as it had been suggested my child might be living with it. I met Christine at a workshop in Auckland and immediately realised that FASD was a message I wanted to share with the education community which I was part of.
Sometime in 2013, I was in conversation with Claire and she suggested wanting to set up some sort of group to support families living with FASD. I was already on my own journey in sharing the FASD message with teachers and education people, but was keen to support the idea, so I agreed to take the next step with Claire.
We approached Christine for her wisdom and guidance and she introduced us to Lisa Smith and Jaks Pritchard. Together we developed our thinking and Fetal Alcohol Spectrum Disorder – Care Action Network was born. With Christine’s contacts we managed to pull together a group of 15 people so that we could register as an Incorporated Society!
A fun memory were the calls we did via tele conference calls on our home landlines across the country. There would always be someone who couldn’t connect or had to dash away and when someone was speaking any other sound would cut them out. However, without the technology at the time we could not have got people from across Aotearoa together. Often it was a number of months or even years before we actually met these people face to face or could put a face to voice and name!
Claire, Lisa, Jaks and I finally met for the first time a number of months after all of this began. Christine had organised a workshop day in Akld and invited us all to join her and meet. We timed our arrivals at Auckland airport and a meeting place so we could physically meet each other for the first time. We had breakfast together and spent the day, in between the workshop, chattering away and connecting. There was lots and lots of talk and sharing of similar experiences of parenting our young men with FASD.
The feeling of community was extremely powerful and the energy we created together palpable – for each of us we were finally amongst others who recognised our parenting journeys!
It was amazing to be part of something new and exciting. We were full of hope for our future. It is incredible today to see the growth of FASD awareness in Aotearoa and the development of FASD-CAN. There is still so much work to do, but the ground that has been gained is immense. Along the way I have met some amazing people and shared some incredible times.
I’m forever grateful for the amazing support and friendship of Christine Rogan, without whom none of this would ever have been possible. I thank Claire Gyde for her vision and the determination to connect families throughout the motu. Thank you to so many people in the FASD community for their friendship and sharing their wisdom and knowledge. Thank you to those who have made FASD the focus and passion of their work, you have given many whānau so much hope. Thank you to the caregivers who live each day supporting their young person and most especially to those who live with the daily challenges of FASD – and who teach us all so much!
Lisa has a paediatric continence practice for neurodiverse tamariki and rangatahi in Taradale, Hawkes Bay.
My son Aaron was six years old when we first knew he had Fetal Alcohol Syndrome, as it was known then, but it was not until he was eleven that we got the full neuropsychological assessment and a diagnosis of intellectual disability – it was a shock. We grieved all over again as we could see ahead the hurdles for our son in a society who did not believe that FASD existed and that these kids were just badly behaved.
I met Jackie Pritchard through my CCS Disability key worker. Jaks told me about her eight year-old boy Alex, who was the first to be diagnosed at the Child Development Unit at Hastings Hospital. She was not scared to share her story nationally and very quickly connected with Christine Rogan. That was the trigger: I decided to dip my toe in and reach out to Christine.
Christine asked me to present at the FASD meeting she was organising one year – and that was me hooked. I realised that the only way to make the world understand my son was to educate and advocate at all levels.
A few years later, I was brought onto the first committee and produced the newsletter every three months. There was very little money at that stage, and we all worked so hard in the early days to get the organisation off the ground. This was on top of work and trying to manage our challenging teenagers.
Claire Gyde’s lad was about the same age as my son and we both connected at least weekly to share how our week had gone with our 15 year-olds. It was a crazy time where we navigated similar problems: schooling (or rather lack of schooling); trouble with the police and absconding.
I remember always starting the conversation: “You’re never going to believe what happened this week!” Despite the rollercoaster life, we both were able to have a laugh and keep ourselves mentally intact.
Being part of FASD-CAN was hard work in the beginning, but we all connected, and that connection that grew stronger because we all had a shared goal through FASD-CAN’s mission statement: ‘Through shared strength, guidance and wisdom, those with FASD can grow and achieve’. I remember us taking ages to come up with that – but it’s always in my head every time I ‘go into battle’ for my son.
As my title says: “Once you know better, you do better.” FASD-CAN gave me the knowledge, strength and hope to carry on, when at times I felt I was drowning. I was around people who ‘got it’ – especially when I felt I was advocating constantly amongst a sea of nonbelievers.
I wear the manaia koru every day which was hand carved by Paul Gyde, Claire’s husband. It is very special to me, as each one is unique. At times when there is a bump in our FASD journey with my lovely son I hold it close and feel secure in the knowledge that I am not alone. Each year things are getting better in Aotearoa because of the hard work and commitment from those that continue to fly the flag of FASD-CAN.
After years of supporting and advocating for her son, Jaks is now running a caregiver support group in Ahuriri / Napier. Get in touch if you’d like to be part of it.
Wow, 10 years since FASD-CAN began, and 14 years since I found out about FASD and started this journey.
When we got our son’s diagnosis in 2009, there was nowhere to go and no one to ask questions of to understand what this all meant. I Googled and got stuff from Canada and the UK. I stumbled onto Alcohol Healthwatch and Christine Rogan, who became my saviour – she seemed to hold all the answers!
Christine got me up to Auckland to a talk they had on, just one month after the diagnosis. It was the eye-opener and mind-awakening I needed to begin to understand and it led to four years of trying to work out what this meant for our lives.
I found myself saying yes to anything Christine would ask of me. Partly because she is just hard to say no to and partly because I knew if I didn't do it, no one would. Being a birth parent I felt it was my mission to speak out and do anything I can to let people know it can be anyone that can be affected. FASD does not discriminate.
Slowly, more families started connecting with others that ‘got it’. There was lots of talk about how we wanted things, what was missing, and what we would like. I remember one particular meet-up, sitting at lunch talking about an organisation where people could come and get info and connect – we just needed that person or people that had the know-how and ability to get this moving. That sure wasn't me. I'm good at, “you tell me what you want from me” and I can go forth. Claire Gyde was the right person for the role – she pulled everything together when we started FASD-CAN.
I've seen this grow from nothing to where we are today – more conferences and speakers, and connecting online, which has been great to learn and help support our kids (who have now turned into adults!).
FASD-CAN has been able to bring our voices together even more and amplify them to start getting nation-wide traction. Having that central organisation that can speak collectively for us all is so valuable. We are starting to be able to offer more training opportunities for families and support workers. The wish-list is slowly getting ticked off.
I tried to get a support group going back in the early days, but I had no idea what I was doing and had nothing really to offer at that stage. So as I’ve gone through this journey and learnt things from others before me and around me I have found through FASD-CAN I am now able to start a local support group. It’s still early days but with support and a collective pathway we can make a difference in others' lives by setting up somewhere they can go after a diagnosis – something a lot of us didn't have, or had to hunt for. There’s still so far to go but together we can make things happen.
There’s so much I could talk about. But essentially, I'm really looking forward to seeing what the next 10 years will bring.
Christine Rogan enticed me into the FASD world 15 years ago with a ticket to Canada and USA to learn about FASD diagnosis and support. Since then, I’ve had the pleasure of meeting hundreds of amazing people with FASD and their loved ones, who have welcomed me into their homes to diagnose, understand, assist and advocate for them the best I could.
I was thrilled to be a founding member of FASD-CAN 10 years ago. As the networks developed, FASD-CAN was set up to serve, support, advocate for and help improve the lives of those living with FASD. Prior to this there was no mechanism to connect families together. Through our combined efforts we are now a team of hundreds of whānau and professionals who recognise, accommodate and support this vulnerable group of individuals with a disability caused by alcohol.
It has been a slow, step-by-step process with many obstacles in the way – systems were working to punish, blame and stigmatise, rather than to understand and support. FASD-CAN has led the way in sharing knowledge, building support networks and anchoring us all through the many turbulences.
I have steadily kept going, diagnosing children, young people and adults, and through them all learning more and more about resilience, courage and strength. I’ve always enjoyed the company of individuals with FASD and their whanau, but it has been the punitive systems they so often find themselves in that I’ve found frightening.
It is FASD-CAN that provides some protection so that the feeling of being alone, helpless and hopeless can be eased. I see that so much has been achieved without funding or recognition – solely through hard work. I can only imagine what can be achieved in the future with suitable government funding.
I see families standing together as a powerful force that will effect change and lead to a better quality of life for those living with FASD. Through FASD-CAN, individuals with FASD are now also finding their voice to speak out proudly.
Congratulations FASD-CAN on your 10th birthday, and best wishes for accelerating progress in the future.
How fantastic to celebrate the progress which has been made over the past decade and to hear from those who were there from the start. My own involvement doesn’t quite stretch 10 years. While the group was being set up I was still trawling the internet and attending middle-of-the-night webinars to try and figure out what was happening with my own teenage son. However, with a ‘late’ diagnosis I was into the FASD arena, boots and all – as committee member, then Treasurer and then Chair of FASD-CAN.
We stand on the shoulders of those who have gone before us. The FASD-CAN founders had a vision to :
And looking back, it is clear great progress has been made towards these goals. Our website has become the major source of information on FASD in Aotearoa. We’ve developed a range of resources – advice for caregivers, including our much-praised Caregiver handbook, information for schools, employers and police.
We recognise that progress towards making New Zealand a better place for people living with Fetal Alcohol Spectrum Disorder requires a significant increase in awareness and understanding of it.
We have advanced this with training courses and workshops for educational professionals, those working in the justice sector, care facilities and others. We continue to expand our work in this area.
Our major focus has always been to support caregivers and we have done this by setting up social media groups and support groups, through our first Navigators and by webinars, online training and through direct contacts with caregivers. We’ve rolled out caregiver training both in person and online.
Major milestones along the way have been:
As we head into our second decade (oh, those pre-teen years...) we hope to see more changes. Some we can bring about ourselves – the development of the voices of those with FASD and their sense of self and mutual support; extension of caregiver training and support; response to increasing requests for training of professionals and provision of Aotearoa-specific resources.
Others need direct action from the New Zealand government – support for those with FASD and their families; an education system which adequately supports those with FASD; recognition of the mental health challenges faced by those with FASD; removing the stigma around FASD and addressing FASD within the justice system.
We are heartened by the formation of a Māori advisory coalition to government to help make the changes needed and the new initiatives from this coalition to advise the FASD-CAN Board. With a strong team, a sprinkling of optimism and increasing societal awareness, we may have a lot more to celebrate on our 20th anniversary!
