A New Plymouth family wants to start a support group for parents and patients suffering from auditory processing disorder.
Parents Nikki and Darryl Greenem believe there is not enough awareness about the disorder, also called APD.
Their son Xay, 8, has the condition. APD patients may pass a hearing test, but they struggle to understand what they hear.
The Greenems noticed problems with Xay's learning and behaviour last year. He had low concentration levels in class and often wandered off.
"When he comes home from school we get the major melt downs, screaming, not listening, and that is also a symptom of this," Nikki said.
When she approached Xay about having an eye test he said, "Why Mum, I can't hear. His eyes, obviously, were fine. When we went to the hearing place his hearing was fine."
APD was suspected so Xay was referred to a Taranaki Base Hospital audiologist.
This took a long time so they took Xay to their doctor, who referred him to the hospital's child and adolescent specialists.
"They did their testing and came back with he had a low IQ and we should do a parenting course, bearing in mind they don't test for APD."
The hospital's audiologist referred them to SoundSkills in Auckland for a proper diagnosis.
They discovered Xay also has amblyaudia, meaning one ear is weak and results in the two ears not working together properly.
APD is not recognised as hearing loss and so tests and treatment are not funded through the health system.
The National Foundation for the Deaf chief executive officer Louise Carroll said recent research on about 1000 12-year-old children uncovered about a third had APD.
"It's a huge problem in New Zealand."
The Greenem's explain APD can be treated with an FM system that the speaker wears and a hearing aid that the child wears. Some children
only have to wear the device for several years because it retrains the brain function.
"He's got two years of primary school left so what we want to do is get onto it now before he gets to intermediate. It could be fixed by then," Darryl said.
Funding for this system for children can be gained through the Ministry of Education, or people can pay for it privately for about $5000.
"They don't fund it if there's no learning disorder," Nikki said. "This affects about 50,000 kids around New Zealand and they funded 50 last year."
So the family, which doesn't want to deal with the bureaucracy, has decided to privately fund the system for Xay.
Carroll said the Government had recently developed an expert reference group to get better outcomes for children.
Several years ago the Ministry of Health said it didn't have the budget to support APD children and passed responsibility to the Ministry of Education.
"So education then had to provide hearing aids and all kinds of things for these children at school. Some schools even decided that the kids would only have the hearing aids from 9am to 3pm and they couldn't take them home.
"We had to work on that to stop these stupid stupid things happening."
The foundation advocated for many families at Government levels.
"We really rattled a lot of cages."
This prompted a review, which resulted in the formation of the expert reference group.
Carroll is pleased with the Government's action so far and recognises that there is no easy resolution.
She explains that APD is a form of functioning deafness.
The Greenem's said going public with their story was not an attack on any of the specialists they have seen so far.
"Everyone needs to be aware of this because people aren't testing for it. My story is very similar to lots of other people's stories. It's not like it just affects us. It affects everyone trying to get the diagnosis so it's very frustrating," Nikki said.
"We've got to bring it out into the open so that people realise it needs funding," Darryl said.
"I believe it's as high as one in every class," Nikki said.
For more information about forming a support group ring the Greenems on 751 0766.
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