Dima, a child with FASD, reads off a sheet of paper:
FASD is when your brain has been damaged by alcohol when you were a baby in your mother's tummy. When you're in the tummy the alcohol got to you and damaged the brain.
Anita Gibbs, a social worker and Dima’s mother, says:
I've got three children aged 17, 15 and 14. My two boys, 14 and 15, live with fetal alcohol spectrum disorder, and they're from Russia originally.
I am a social worker by training and that influenced, in fact, even the desire to adopt children. It also includes my understanding that they would have had a traumatic background. It's also influenced my ability to go, and find, and get knowledge to help my understanding of fetal alcohol spectrum disorder improve.
Dima has great courage in wanting to participate and tell people about FASD so that they can understand him better, as well as perhaps have courage themselves.
I would like to tell you that FASD can affect you physically and mentally. And affects the way you do everyday things. As a person, it can affect you the way you interact with people, let's say the way you speak, your body language and also the impressions you're giving to other people.
So the video that Dima gave us, a wee speech, at the conference actually in New Zealand last year, and he talks about the things that have helped him, the things that have made a difference and really how other young people perhaps can think about their FASD, as well as avoid getting into trouble because he was kind of aware that, you know, it's easy for teenagers to really go off the rails.
How I advise someone with FASD to stay out of trouble, my advice would be: Get as much as support as you can from your family or maybe counselling, buddies etc. Don't hang out with people who are known to get in trouble and who are naughty because you'll most likely go and follow them and get in trouble with them.
And essentially, I spend most of my time, apart from being a full-time academic at University of Otago, thinking, eating, dreaming, sleeping FASD, because of the lives that we live. I'm variably dealing with five to twenty professionals at any one point in our family's lives and it drives me nuts.
I think the health professions need to believe the family and actually believe the parents, in terms of the parents will be talking about chaos that happens at home, sometimes that doesn't happen at school, and I've known that parents haven't been believed. So believing the parents is really important. And also work alongside and in partnership with the parents to access a range of supports for these people, young people, when they're perhaps struggling at school or in relationships in particular.
So let them discover what they want to communicate to others about FASD, my boys are increasingly doing that. I'm increasingly standing back and going, OK, you tell the world what you want them to know.
My family has given me so much support over the years, like when I've been upset and they have helped me calm down, also in moments of sadness and frustration. They have been there by my side and help me through whatever it is that I needed help with.
I think, I guess for my boys, it's for people to actually appreciate that they have a lot to offer and that they were born with this lifelong disability, they didn't choose to be born with that disability, it's there, it's their reality, but actually with others' tolerance they can lead successful and flourishing lives.
So this is transformative work, whatever it is, whether you're a professional, or a parent, or a young person. I'm trying to help my boys be the best young people that they can be, with this impairment.
Transformative work is actually helping professionals accept there is this disability. That it is a disability alongside other disabilities, like autism or ADHD, so it is a neurodisability. It's also about acknowledging that actually there are some significant impacts at all levels of functioning for children with this disability, and it's about agreeing that the best and effective way to be working with children and families is to work in partnership and to share your collective wisdom to bring about positive solutions.