“It’s an invisible disability” – By Karina Abadia

FASD: “It is an invisible disability,” says mother

By Karina Abadia
Tuesday, June 5th 2012
Lisa Smith with her adopted son Aaron. Photo supplied

Lisa Smith’s adopted son Aaron has Foetal Alcohol Syndrome. But the fact the New Zealand government barely recognises his disability makes it very difficult for families and schools to know how to manage children affected by this type of brain damage.

Aaron has been through a number of different schools. Initially things would go okay because funding and resources were provided for him to settle in, says Mrs Smith.

“He would do reasonably well with up to two hours a day teacher aide support to keep a close eye on him in the playground and in small group work.

“Then the school would decide he was doing fine and didn’t need the teacher aide anymore. But what they don’t realise is these children need that structure and support.”

Her worst moment was sitting in the principal’s office while he discussed with Board of Trustees’ members whether to expel her son.

“He just felt that Aaron was an extremely badly behaved child. He just did not get it. [As a parent] you feel totally helpless, isolated and frightened for the future of your child.”

Mrs Smith finds it frustrating that some educators do not appreciate her son acts out because he has a neuro-disability. She does not blame them however. It is up to the government to act through policy which looks at prevention and provides better assessment and support, she says.

“It is an invisible disability and is as serious as a child in a wheelchair except the environment around them is not geared up to manage them like it is for the physically disabled. These children have irreversible and lifelong brain damage, which has been caused by pre-natal alcohol exposure.”

She counts herself lucky that she lives in Hawkes Bay, which has the only Developmental Assessment Programme in New Zealand. The staff there have the skills to complete a comprehensive neuropsychological assessment and diagnosis ofFoetal Alcohol Spectrum Disorder (FASD), the umbrella term which includes Foetal Alcohol Syndrome.

Specialists there recommend learning and behavioural strategies for families and teachers. “It certainly made it much clearer for us as to what level Aaron was functioning at and what his abilities and difficulties were,” says Mrs Smith.

Aaron, who is in year 9, now goes to a local special needs school where he is more settled because he is being provided with adequate support, says Mrs Smith. He also attends Rainbow Umbrella Charitable Trust afterschool care programme. The manager Jeannine Bainbridge says there are not many programmes like it in New Zealand, which cater specifically to children with special needs or disabilities. There is certainly a need but obtaining funding is always a “challenge”, she says.

Mrs Bainbridge is unsure how many children at Rainbow Umbrella have FASD. “We only have Aaron who has a formal diagnosis. Some are being investigated for the condition and there are others who I’d say probably have it but have not been diagnosed.”

That is part of the problem, says child and adolescent neuropsychologist Doctor Valerie McGinn. As one of the leaders in New Zealand in FASD she trains teams to diagnose children with the condition but due to a lack of funding they are only reaching the tip of the iceberg.

“We’ve trained three teams now and we’ve just started to train three more through funding from the Ministry of Health. But it’s not good enough. FASD is often not being diagnosed or recognised simply due to a lack of services.”

In Canada and the United States hospitals have specialised clinics, children are diagnosed and their schools have resources but in New Zealand we’re very much behind, says Doctor McGinn.

The international rate of FASD is one to four per cent of all children. “We believe the New Zealand rate is closer to four per cent because of our patterns of heavy drinking and the way alcohol permeates our culture,” she says.

“There are a huge number of children in our schools who are presenting with difficult behaviours and learning and social problems as a result of this disability.

“Many of them are being expelled from schools. It’s being looked at as bad behaviour and willful disobedience when in fact they have got very serious brain damage that underpins their other problems.”

It is actually quite easy to teach them once they are diagnosed, she says. “The important thing for teachers to grasp is children with FASD need to be treated as much younger children because they think, behave and respond as if they are many years younger than they are.

“They need structure and organisation. That means teachers need to give them simple instructions and one thing to do at a time. They shouldn’t be expected to complete the same complexity of work as other children their age. They are capable of doing things but expectations need to be lowered so they are realistic.

“The second thing is they need someone to direct them. You have to make sure they know what they’re doing and how to do it. You’ve got to keep prompting them each step of the way. That is an extra load on the teacher but then again if you’re not doing that, then that child is probably playing up, meaning that the rest of the class can’t focus.

“The other thing is they have poorly regulated emotions so they can really overreact to things. They act out usually because they’re confused and scared and the demands are too high. What it comes down to is people being aware of the nature of their needs and making sure they’re well supervised,” says Doctor McGinn.

“Because it’s not being diagnosed, judges see young people in front of them everyday in the courts who most likely have FASD. They are extremely concerned because these people should be picked up within the schools and health system when they’re young. They should never have to end up in the courts.

“FASD is the biggest social justice issue of our time and those who work in the field realise that as do a lot of judges and academics. But translating that into political change is hard.”



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