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Video transcript - Challenges and hope

Neil who looks after two children with FASD says:

“With these kids, the critical thing is that they have lots of weaknesses, but hey have some fantastic strengths.

Life with a child with FASD is interesting, challenging but also lots of fun.”

Sam who cares for Jazpa who has FASD says:

“Jazpa’s very very loving, he’s very affectionate, he’s um, very polite, a really down to earth kid.”

Clinical Psychologist Shelli Hastings says:

“It’s the same issues day in day out, they’re unrelenting, they’re chronic, they’re severe.”

Sam says:

“I’m pretty much his external brain for everything. He forgets to drink unless I tell him. Sometimes he, he I have a belly ache and not realise he’s hungry till I offer food. So pretty much their external brain is, is how you’ve got to be.”

Neil says:

“Lina and Michael are very very difficult on a day-to-day basis. They don’t understand why their emotions go off track, and they don’t know how to control them, and they have to be taught those things, they have to be supported and shown.”

Amanda who cares for Faith who has FASD says:

“When you think about a child with FASD ah, being developmentally half their chronological age. That’s hard for you to, for you as a parent to keep remembering that. So what would you expect from a five year old not what would I expect from a ten year old. She doesn’t like to sit at the table and eat with us. So we accommodate that by not putting her at the table she sits at the breakfast bar on her own and eats. Yeah, so just changing what we would expect.”

Sam says:

“If your child’s having a breakdown, which mine has had, you know meltdowns out you know people shake their head and, and say what a horrid kid. You know don’t judge someone else child because, you know FASD is a brain injury. It’s a visible disability. So, when these kids are having meltdowns, they look normal, but on the inside, things are not right. And they can’t control those meltdowns.
We do one instruction at a time. Just keep your instructions simple and, and don’t expect too much.”

Neil says:

“The critical thing for these children is to have structure and concrete, consistent, um programs around them to be able to help them survive. So everything has to be the same, everybody has to be on board and we have to support them. And if you do that, and if you’re strong about it you can be successful.”

Amanda says:

“So the most important thing I’ve done is learnt the neurobehavioral model of trying differently not harder. And understand why, um she does the things that she does and think brain, not behaviour.

Its proof that if you do accommodate these children, and work with them, not against them, that they can achieve and they can be happy learners.”

Sam says:

“I want him to follow his dreams. He wants to be a builder. He loves working with woods, and tools so anything that he wants to be I will support him.”

Amanda says:

“For Faith’s future I think if she can live semi independently or independently that would be fantastic but um just to, be happy and to be supported by the community, by us and to help her achieve whatever it is she wants to achieve.”

Neil says:

“The thing about these kids is that they just want to be like everybody else. And if they’re given the chance and structure they can join in and they can be part of the community, and then when you’ve got that, you can achieve great things with them.”