Strong Voices

This summer Trudy and Paul Masters are expecting their first banana harvest from their rural block near Whangārei.

But there is more at stake for the couple than wanting to join Northland’s recent enthusiasm for growing the fruit.

The Masters moved north from Auckland in 2016 in search of an easier place to care for Ben.

Ben, 14, has the rare Nicolaides Baraitser syndrome, which was only diagnosed four years ago after genetic testing as part of a research project in Japan. He has very high needs, including intellectual disability and physical challenges, epilepsy and many allergies. As well, Ben is non-verbal and needs help with every aspect of daily living.

The family moved from Kaukapakapa, north-west of Auckland, when taking Ben to the specialist Wilson School in Takapuna each day was becoming too hard.

The move has meant a huge lifestyle change for them. “I love it, but it has taken an adjustment for Paul,” Trudy says. They have found it hard to meet people when they can’t go out in the evenings and it’s too difficult to take Ben. Their free time is during the day when Ben is at the Blomfield Special School in Whangārei.

The shortage of trained support staff and respite care in Northland is another major drawback. The couple, who manage Ben’s individualised funding, qualify for respite care because of Ben’s high needs. But they struggle to find ways to use it. There is only one respite facility in Whangārei for children of Ben’s age, which they no longer use after differences earlier this year over how Ben’s behaviour was managed.

They are now trying to employ a support worker with the right training in complex needs. “We have just been managing ourselves,” Trudy says. “There is the funding there, but there is just a shortage.”

As Ben has got bigger and stronger, so have the challenges. “It was lucky that we were already in behavioural services,” Trudy says.

At the same time, she describes him as a happy boy. “He is very social and he’s very nosy. He wants to be part of things.”

When the family first moved to Whangārei, Trudy was able to work remotely, but she gave up her job in accounts and compliance two years ago when Ben’s kneecap dislocated, a condition related to the syndrome. This resulted in him having a knee reconstruction. At the same time, Trudy and Paul were struggling to manage Ben’s escalating and challenging behaviour – not helped by the pain.

“It just got too tiring,” Trudy says. “Paul also gave up work – we started to think outside the square.” Trudy and Paul also do small-scale property development, helped by an inheritance from Paul’s father. “We only do one at a time.”

Then Trudy hit on the idea of growing bananas. “We have got a whole lot of banana plantations up here.” She has planted 100 misi luki (lady finger) and the more common supermarket offering dwarf cavendish. Both varieties do well in Northland. “We put them in in October last year. Hopefully this summer we will start getting fruit,” she says.

“I love growing things, and we have got the land here.”

Caption: Ben Masters on the family’s Whangārei farm.