The voices of rangatahi and adults with Fetal Alcohol Spectrum Disorder around the world is growing, and rightly so – after all, they are the experts on what it’s like to have FASD!

Over the last couple of years, some young people within Aotearoa have been expressing interest in getting together to develop their own voices to raise awareness of FASD. They’re also learning to advocate for themselves, and a friendship group has formed which is proving empowering for them all. 

Our Clinical Advisor Dr Valerie McGinn alongside our Chair Dr Leigh Henderson were instrumental in starting the first Pizza Club two years ago. Since then FASD-CAN created an individuals with FASD stream at the last two annual HUI in Tāmaki Makaurau and Kirikiriroa. There have been wonderful friendships and connections made – and continue to be made.  

Further to the Pizza Clubs and the Hui get-togethers, the FASD-CAN Individuals Development Project (IDP) was formed and project-led by FASD-CAN Navigator Anna Gundesen.  

A special weekend 

In early March, our IDP group of rangatahi with FASD planned and facilitated a two-day hui in Pōneke / Wellington. The three young leaders of the IDP, Byron, Teowai and Noah, had helped to organise the weekend with Anna.  

They were very aware of tikanga and being culturally aware, so both days days began with karakia and whanaungatanga. Day One was a PATH (Planning Alternative Tomorrows with Hope) day with two facilitators – Maraea Pipi-Takoko and Ngatoia Skipper Whaanga.  

The co-leaders came up with three C's for Day Two  - Connection, Culture and Creativity. It was a fun day, with a screen-printing workshop where the rangatahi printed their own bags and tee-shirts with FASD-CAN logos, and a special QR code that was set up to direct people to our website – the aim being to bring awareness of FASD and for people to find out more information. 

Anna summed up the weekend:  

“The focus was 'process, not outcome'.. the priority was to support the leader group (Byron, Teowai and Noah) to initiate and lead the focus of the two days. They wanted to set the tikanga and get all the individuals to agree with that in principle, so that it can be a safe environment for all when they meet.  

“They really wanted to give everyone the opportunity to feel ok about who they are and about getting the confidence to speak up. And they really want to advocate for a better life for those with FASD and to support everyone when times are tough! So admirable and heartening.  

“It was a wonderfully immersive experience for me as project-lead to guide and tautoko in an FASD-informed way in all my interactions and planning – to take things slowly at each meeting and not to overload with too many decisions; take time, give lots of reminders and follow-up texts as summaries of what was agreed at meetings etcetera ... it also gave me even more insight into how easily others can be fooled by our individuals with FASD – they are so beguiling, competent and verbally expressive that it is easy to have expectations that end up being unrealistic. And that there are 'on days and off days' – and that's ok! The whole experience has been a highlight for me.” 

A highlight of the two days was the gift that Lindsay Edwards bought to the event. His expertise in peer support and mentoring gave some of our individuals with FASD a one to one experience of being in a space where they felt heard and valued. They reported back that this made a difference to their overall wellbeing. 

Some of the comments from the individuals after the weekend: 

• “Being there was an amazing experience and a total success with the planning for it. I was real happy to meet everyone and see that the caregivers and parents were having fun too.”
  
  
• “For me it meant a great opportunity and a learning curve for me and the other rangatahi too.”
  
  
•  “Firstly I would like to thank everyone at FASD-CAN and all others involved in making it all happen for us. I'm truly grateful that it has changed so many lives for the better and brought together individuals from all across NZ to create a whanau. In regards to the two days it was great to see majority of those with FASD and their family/caregivers involved with the activities, and all getting along in harmony. I hope FASD is recognised as a full disability in the near future so the organisation can get the funding it deserves and so the individuals can access the support they need without having to face an uphill battle of applications and phone appointments when trying to apply for financial help from the system, which is what the situation is currently. I don't think anything else could have improved the two days but I'm sure we all hope for a 3-4 day event in the future. And we are still laying down the foundations of our tikanga and way of doing things but will soon be ready to handle any scenario.”

And from caregivers / whānau: 

• “The joy and energy from the individuals getting together made my heart sing. The social isolation and judgement they face every day just faded away and they could be who they are with people who get them. That was the highlight for me.”
  
  
• “Although there was a fair bit of anxiety before we got on the plane to Wellington, when we got there he was quite excited to meet up with friends he has made at previous FASD gatherings. He was quite proud of himself for talking to people he didn’t know which is a big thing for him.”
  
  
•  “It was great to reconnect/connect with other parents/caregivers who get it. Sharing stories, ideas, and other valuable pieces of information a worthwhile day for me. It's nice to be with other people whose normal lives are just as chaoticly normal as mine is.”
  
  
• “A gift to be present to see our son relax, connect with others living with FASD, feel part of a community/whanau and to see him step up in being one of the young leaders team. It was like he was blossoming before our eyes. So precious… to also see the original idea of screen printing tee-shirts around FASD logos and FASD education being supported and come to fruition. To see the joy and pride on everyone’s face with their creations was amazing. Like an embracing of their world and feeling confident to put it out there. Also the opportunity to connect with other parents and caregivers was so nurturing and valuable. Thank you so much for these opportunities for our young people to grow and embrace their strengths.”

FASD-CAN is hoping to gain funding to continue this wonderful mahi for the forseeable future. 

Click here to see a short video of the weekend (with thanks to Anna).