El Rancho in Waikanae again hosted rangatahi with FASD for three days in late February of fun and whanaungatanga / connection, confidence-building, support, encouragement and awesome activities.
Some of our young kaiārahi / leaders have made great strides towards their self-assigned goals of advocacy for FASD awareness over the last year. They’re the experts in how FASD affects their lives, and we organise these weekends to support them to advocate for more awareness.
We are very grateful to Te Pou and CAYAD (Community Action on Youth and Drugs) for their generous funding of this event, as well as some private funders. Thank you.
• We are a diverse, multi-cultural group of individuals with brain differences resulting from pre-natal alcohol exposure.
• We want to create opportunities for us to plant our feet firmly with pride, confidence and certainty.
• We stand together with courage.
• We grow our mana, our connections and our leadership skills so our whānau and communities can hear our voices and improve their knowledge and understanding of FASD.
• We want our voices heard to bring about change.
The weekend generally begins with karakia / setting intentions, whanaungatanga / connection, tikanga / the agreed and right way to do things over their shared time. The majority of the time alternates between sharing and educational sessions, downtime and fun activities.
The workshops this year focused on 'Whakamana – Putting the Power into Empowerment', led by a passionate and skilled advocate: kaiāwhina / facilitator Mike Sansom. There was also a beautiful memorial service led by Byron (one of our youth leaders) for Martin, one of our rangatahi who passed at the beginning of this year.
There were parallel sessions for the caregivers that covered a range of topics including somatic techniques to calm the nervous system, pre- and post-vention for suicide, de-escalation and aggression as well as lots of time for whanaungatanga and sharing support and understanding with each other.
Fun activities included river walks, kayaking and raft-building, pool swimming, Clip n’Climb wall climbing, relaxation techniques, an all-out Nerf gun war and a wonderful bonfire (with marshmallows of course!).
Click here to read some of the feedback from the weekend.
Our kaiārahi / leaders at this event were Byron Jones, Teowai Te Moana-Clayton, Noah Langdon-Reidy and Lindsay Edwards. We asked them, and some of our kaiāwhina / facilitators and caregivers, how they felt about the weekend.
Byron
“It's great to see the community growing and friendships and bonds strengthening organically. At the beginning, this was my only goal when I was asked to support Anna and FASD-CAN as a leader. The goal was to bring individuals with FASD together as a group to meet each other and to help bring those individuals out of isolation so they can know that they are not alone, and that they have a community and a safe place they can call home. This has been a huge success! And I hope that more individuals in need join our community soon, so they can know they have a family of like-minded brothers and sisters.
“The goals in mind for me now are how can we strengthen our foundation and bring in more funds to offer more support and events for our people. And most importantly: healing. How do we begin to offer healing to the individuals and caregivers in our whānau who have been deeply wounded and scarred? The answer to this will be discussed among our group in the coming weeks…”
Teowai
"As a leader, going to the IDP in Wellington was another awesome opportunity and another achievement in our journey together as a group. I felt more connected than ever on this specific one, for I learnt new ways to lead once again and to become more confident as I speak more to the group and help with the activities. I had very deep talks and chats with certain individuals and had more fun catching up with the former og's (original gang) from the first pizza night I attended in Albany, Auckland. I personally found solace and calmness due to how stressful the last two were on me (which I punched through regardless) – this one was special for me to find calm and silence among the nature and being away from the noisy city area of Wellington.
"I was super-excited to attend again as a kaiārahi with Noah and Byron. I feel as a team we have once again achieved another milestone to be proud of and be excited for the next one to come – and future ones as well."
Noah
“Seeing people come out of their shells and being able to talk and advocate for themselves is amazing. At the last event there were still quite a few of us who were quite reclusive and introverted, but now almost everyone is participating… this is why it’s so important to get more funding for this because we can all interact on a level we don’t get to in our daily living and we can make these healthy connections.
I see myself in everyone there – it’s more than learning to be comfortable around each other… it’s also about learning to be comfortable around ourselves.
“I also want to say that it was so great having Mike Sansom there to facilitate for us so we could articulate our key messages and present them to our parents and caregivers.”
Lindsay
Lindsay Edwards brings his mātauranga māori lens to the hui alongside his lived experience and his peer support expertise. He offers 1:1 sessions to our rangatahi, who say his open-hearted wairua and his empathetic manner is very helpful.
I have attended three IDP events and have had the overwhelming privilege to witness the rapid transformation in each person who participates. They grow in confidence, leadership, social and wānanga engagement and so much more as a result of gathering in an environment where everyone feels valued, understood, supported, included, a sense of belonging and safety. Their mana and dignity is empowered, and most importantly, they feel heard and validated in a space with no judgement.
FASD CAN IDP events not only change the lives of young adults living with this preventable, invisible brain injury but also the lives of their parents and caregivers – not to mention saving millions of taxpayer dollars in the health and justice system.
Anna Gundesen
Our FASD Navigator for Tāmaki Makaurau Auckland doubles as the Kaiāwhina / project lead for the IDP events
“Each IDP has been wonderful in its own right. It's incredible to see now that we have held our fourth event how much growth and confidence is emerging, not only with our kaiārahi / young leaders, but also with all the individuals attending these events. Once they have come once, they all seem to want to come back and reconnect with each other. To have a space where they experience acceptance and no judgement is huge for them (unsurprisingly). I’m blown away by the level of compassion they show for each other, and the courageous way they share their own stories of struggling in a world that ‘doesn’t get them’. These events allow their personal growth to flourish, and the workshops we offer gently guides that growth to empower them towards leadership and self-advocacy. We need a secure future of ongoing events and peer support training for our kaiārahi to foster this growth. Mauri Ora."
Gythlian Loveday
The adoptive caregiver of Teowai, Gythlian has decades of social work behind her.
“Truly, the weekend was a rollercoaster of heavy and uplifting, wonderful and ghastly! Life is just so unbelievably hard for these young people and their families – there’s so very little support. But these weekends are so empowering for individuals and caregivers alike. To keep in touch and strengthen connections with other people who get it is just gold.
“The presentation of the key points by these young people, some of whom couldn’t make eye contact a year ago, but who are now enthusiastic, confident and passionate, was incredible.
I’ve honestly never seen anything like it and I will never forget it. These are the authentic voices of lived experience of FASD in Aotearoa – it’s priceless.”
Lee Tempest
Lee is a one of the founders of VisAble, and attended with her daughter. The weekend was challenging for them both, but Lee found great strength from being with other whānau.
“This event is an amazing thing to be part of. It’s so incredible for the mental health of caregivers to be with others who see and understand what we go through. It was just wonderful to have some space to be able to have a bit of fun with others and talk things through... I gained some strength from this.”
Mike Sansom
Mike is an experienced international development specialist who has worked for years in the social inclusion and disability space at policy level. He first heard about FASD when facilitating a series of workshops at Oranga Tamariki disability strategy – and was immediately hooked. He was a key kaiāwhina / facilitator at the IDP4.
“I got home on Sunday night and I realised that after just one weekend, I actually missed this amazing cohort of rangatahi – they just completely blew me away! My goal was, as always, to get people to look outwards and give them the knowledge, skills, confidence and opportunity to self-advocate. This doesn’t have to mean speaking to important people in public – it can mean talking about FASD to an uncle, a teacher, a doctor. These young people have had a chance to get together several times now and it’s changed them. Their emotional intelligence is astounding when they get a chance to discuss their lives.”
The group of rangatahi with FASD spent some time with Mike defining their needs and discussing key points they want to share about their experiences of living with this disability. The headline below is what they wanted this document to be called. They presented these points on the Sunday morning event to the caregivers and organisers.
FASD and Multiple System Failure
Here is a great overview video of the weekend, put together by Anna Gundesen.
