Living with FASD (Fetal Alcohol Spectrum Disorder)

A Gisborne mother says there is a need for targeted support in schools for children with Foetal Alcohol Spectrum Disorder (FASD). Danielle Takoko is a mother of five and two are on the FASD spectrum.

“There is a constant theme of extreme chaos. It doesn’t come alone — there are other underlying disorders and intellectual disabilities which come alongside it,” she says.

“Things that take other kids only a minute to learn can take our kids 10 to 30 minutes of learning and then reiterating it every day.

“For me as a parent, it’s a journey of constantly learning, regulating and trying to figure out what they need.”

Mrs Takoko and her husband were shown a short video on what living with the disorder could look like, before adopting their children.

“When we first saw the video we didn’t know much, but as time has passed, we have become better at managing it in our whānau.

“For the last 14 years, as each child comes to a new age and stage of life, we learn more about the disorder and evolve our ways of managing it accordingly.”

Mrs Takoko said many people did not know that FASD was a brain injury and that every child presented it differently.

“For example, one of our sons with it has empathy while the other doesn’t.”

There was no medication for this disorder, Mrs Takoko said.

“You can’t medicate something that is not there. Parts of the brain just did not grow while they were in the womb.

“You can’t regrow the parts later on in life.”

Mrs Takoko said there was no targeted help for her whānau because the government still had not recognised the disorder as a brain injury.

“It is not recognised, so it doesn’t fit into the box where there is specific funding to tap into.”

Neuropsychiatrist Dr Gil Newburn, a specialist in brain injury, said alcohol consumption during pregnancy could cause a range of issues to a child’s

brain.

“At three to nine weeks, when the brain does its biggest development, alcohol

can cause physical abnormalities in the baby.

“Earlier than that alcohol can impact the whole neural tube, the tissue which turns into the brain of the child. This can cause spinal bifida, chiari malformation and in some cases, death.”

Dr Newburn explained why people with FASD reacted impulsively.

“It is hard for people with this disorder to hold two things in their mind at the same time, like hearing someone talk and listening to the meaning.

“When a child with FASD is in a situation with a parent or a teacher or the police, they can hear them but can’t get the message and this creates issues.

“There is a network in our brain called the salience network which works as our species survival system. In people with FASD this is not properly reactive.

“So people living with the disorder treat everything as a threat. They become impulsive and aggressive, because that’s how the brain is developed in these children.”

Mrs Takoko said she had to fight persistently and sign many forms for her children to get them help from their school.

“There is some help through the Ministry of Education but it’s more behaviour-based, not FASD-based.

“If you manage to get in, there is IWS (Intensive Wrap-around Service) available through the Ministry as well.

“But there is a huge process to get it. It’s not an easy job, you need approvals and to show you meet the criteria.

“I understand that IWS is only given to 0.05 percent of children nationally. So it is really hard to get.

“And again, that is based on being at home or school with extreme behaviours, not FASD.”

Mrs Takoko wants people to understand that, “any time someone is drinking during pregnancy, irreversible harm is being caused to the baby”.

“The government must acknowledge FASD as a brain injury, not just something to keep sweeping under the carpet. We have got things which need to be done.

“We have whānau who are in extreme situations . . . we are having to ring the police to get help.

“And the police don’t necessarily understand we need help to physically stop the situation but we don’t need our kids cuffed and taken away.”

Mrs Takoko said it was about time the community and schools came on board to provide specialised support to the hundreds of children in East Coast who have this disorder, diagnosed or undiagnosed.

Filmed and Edited by
Ben Cowper

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