Supported on the spectrum
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Pat and Theresa Tongi’s first baby boy, Henry, was diagnosed with autism at the age of two. When their second son, Andrew, turned three, it was clear that he also had the condition.
“The red flag was the lack of speech,” says Theresa.
Because of their experience with Henry, the two police officers knew all too well what challenges lay ahead. “It was very sad. We were gutted, but at least we knew what to expect.”
The couple have always been a good team and good friends, ever since they first met in Auckland in 2003 during the recruitment phase of a pilot course aimed at getting more Pacific Islanders into Police. Pat is Tongan and Theresa is Samoan.
Theresa joined Police first and Pat followed a few months later. After graduation they worked in Auckland, Pat on the frontline and Theresa in inquiries, youth aid and the CJSU.
They married in 2007 and daughter Victorhea was born in 2008. Henry came along two years later and then Andrew – two children with ASD (autism spectrum disorder) who need constant high-level care.
Pat and Theresa felt it might be a good idea to shift from the big city to somewhere with a slower, quieter and, hopefully, more manageable pace.
Pat was a detective by then and when a job came up in New Plymouth, they pursued the opportunity, with Theresa able to transfer on welfare grounds.
She worked FEO and Pat was working shifts, which meant family life was still far from easy or cohesive. The couple were “ships in the night”, and eventually Theresa left Police to be at home fulltime.
“We realised just how challenging it is with ASD children. It can be quite isolating and it’s difficult to spend time with these children in public spaces. They can’t be left on their own as many are like toddlers and don’t understand danger.”
Henry and Andrew are Level 3 on the spectrum – non-verbal, not toilet trained, don’t sleep well and have to be fed, washed and dressed. It’s full-on for all the family, which now includes three-year-old Viola.
“We knew how challenging our boys were, and we knew there would be other families out there,” Theresa says. “We knew we all needed support.”
Christian faith is important to the family and the local church was an obvious place to start. They started organising ASD family support days for up to eight families at a time, with volunteers watching the kids play so parents could have a break and catch up with each other.
Theresa always made a point of ensuring there was lots of nice food and treats for everyone.
From small beginnings in the church hall, the family support day has evolved into a charitable trust, ASDConnex, set up by the Tongis and administered by a board that includes parents.
Today, the monthly family support days have catering staff and can call on up to 30 volunteers, working in a more structured community hall space that has separate indoor and outdoor areas for play and educational and interactive activities. Up to 80 families are now registered with the charity, which is the only one of its kind in New Zealand.
It also runs mums’ nights out, mums’ coffee groups and men’s breakfasts and is working on a siblings programme to be run by and for the siblings of ASD children.
ASDConnex is made possible through donations and grants. “It’s very important that it’s all free for the parents,” Pat says. “There is usually no potential for two incomes in these families, so they don’t need any further financial burden on top of having to look after their kids.”
The Tongis hope that at some point soon, the family support days can be held fortnightly, and in a purpose-built facility that can cater for higher-needs kids. However, that requires more resources and funding. To that end, last year they organised a spectacular, black-tie fundraiser – the ASDConnex Sapphire Ball at the TSB Showplace in New Plymouth. It coincided with Autism Awareness Month with its name, Sapphire, representing the blue of autism awareness campaigns. Guest speaker was the patron, All Black legend Sir Michael Jones, who is Theresa’s cousin.
The ball was a huge success, raising $22,160 for the cause. ASDConnex says that at the centre of it all is the desire to create an environment where parents are celebrated, supported and encouraged and where children are happy and safe and all behaviours are accepted.
A bittersweet irony for Pat and Theresa is that the family days are not always suitable for their own boys, now aged 9 and 7, whose needs are such that it can be overwhelming and stressful for them to be in crowded or noisy environments.
And looking after Henry and Andrew can be a very physical job. “We have to stay fit so we can physically handle them,” Pat says.
For him and Theresa, it was a bonus that in New Plymouth they were able to buy their own home, instead of renting, as they had done in Auckland. When you have ASD kids who can break windows and kick in walls and doors, that’s a situation that doesn’t go down well in rental accommodation.
Despite the challenges, they see their boys as a blessing in their lives – lives that have changed so much because of them. “They have made us better people,” Theresa says. “We don’t sweat the small stuff and they have taught us sacrifice and patience.”
The two boys have a special bond and are very protective of each other. Like many autistic children, they love swimming and going to the beach. They are showered with unconditional love from their parents and have the support of teacher aides and extended family. Police managers and colleagues are also understanding, Pat says, when the boys’ needs must come first.
“When we moved here, we didn’t have anyone,” Theresa recalls.
Now, thanks to the Tongis’ vision and dedication, all Taranaki’s ASD families do have someone.
For more information, visit the website asdconnex.org.nz.