What the death of a young-adult FASD sufferer shows about NZ's health systemby Sarah Catherall
That night, Heke was subdued as he ate a plate of butter chicken. “What I didn’t realise was that would be his last meal,’’ says Willcox.
Heke, who had the cognitive age of a 10-year-old, was a child in a man’s body.
“He usually gives me a big hug, but this time he didn’t. I said, ‘See you on Sunday,’ partly because there’s nothing in those units for them to do, so I wanted him to have something to look forward to. He said nothing, looked at me and walked away.’’
At 8pm, he phoned her – a daily occurrence – and asked her to remember a song he wanted played at his funeral, which Willcox pretended to ignore, hoping it was the right approach. Heke then rang his sister and asked her to play the same song – by the band Hollywood Dead – before he hung up.
Not long after those calls, Willcox phoned the head nurse at the unit, saying she was worried Heke was going to take his life. “She reassured me they would keep a good eye on him.’’ At 11pm, Willcox and her husband, Peter, got a call that Heke had died in a suspected suicide.
The couple are still grieving over their loss and demanding answers from health officials. They also don’t want Heke’s death to be in vain, speaking out with the hope that children and adults with Fetal Alcohol Spectrum Disorder (FASD) – and their supportive families and foster families – may finally get recognition and help. “His whole life was made difficult because no one understood his condition,’’ says Willcox. The DHB has ordered an independent review.
Heke, who came into the Willcox’s care at the age of one, was their second foster child with FASD. His disability meant he was slower to crawl and walk, and needed help with eating. At times, his behaviour and the level of care he needed were so difficult that the couple asked for extra support from the then Child, Youth and Family agency.
They never got it. Heke was sent to a youth-justice home, where Willcox says he began mixing with naughty kids. “He started breaking into homes. It was completely the wrong environment for him.”
From intermediate school onwards, he was put in a special-needs unit, which Willcox says was the worst environment for him. “He needed to learn at a different pace, but not to be in a special-needs unit. There was no place for him. He’d come home so angry and stressed.’’
Parents and caregivers get no respite from FASD’s effects on their children. Over the years, though, the Willcoxes needed it. “When these kids are stressed, they go nuts,’’ she says.
At 13, he went to a boys’ home, but the Willcoxes saw him regularly and continued to care about his wellbeing. At 17, he returned to live with them, until, in his early twenties, he began hanging around with a group of troubled kids. “He was functioning a lot younger than them. One day, he just had this massive breakdown and he was taken to the mental-health unit.
“For three years, he had lived with people who were suicidal. He was living with people with serious mental-health issues. One of the big problems was that he often adopted copycat behaviour,’’ says Willcox. On the Sunday before his death, he spent two nights with Rita and Peter. When Willcox returned him to the unit on Tuesday, another patient had reportedly taken his life.
Particularly heartbreaking for the couple was the fact they had just secured funding for Heke, and hoped he’d be shifted into a communal-living environment.
Willcox says adults with FASD need the equivalent of a community home staffed by experts who understand their condition. “Tamaki needed to be in a supported-living environment. It’s like making sure a nine-year-old is parented and looked after.
“Although we are angry and we are demanding answers, you can’t really blame the hospital, because the staff aren’t trained to look after people with FASD. It’s a lifetime battle for those with the disorder and their families.”
Heke’s doctor, Valerie McGinn, understood his condition, as the Auckland neuropsychologist has spent the past decade helping hundreds of children and adults with FASD, she says. “No one was willing to listen and do things differently to meet his disability needs.”
Where to get help
- Free call or text 1737 any time for support from a trained counsellor
- Suicide Crisis Helpline: 0508 828 865 (0508 TAUTOKO)
- Lifeline: 0800 543 354 (0800 LIFELINE) or free text 4357 (HELP)
- Youthline: 0800 376 633, free text 234 or email email@example.com or online chat
- Kidsline: 0800 54 37 54 (0800 KIDSLINE) for young people up to 18 years of age, 24/7
- Samaritans: 0800 726 666
- Healthline: 0800 611 116
- Depression Helpline: 0800 111 757 or free text 4202 to talk to a trained counsellor, or visit depression.org.nz
- Anxiety New Zealand: 0800 269 4389 (0800 ANXIETY)
- Supporting Families in Mental Illness: 0800 732 825
- Solace Support Auckland: Call 09 425 6750 or 021 998 949 for information on monthly meetings
- In an emergency, call 111.
- For more information, visit mentalhealth.org.nz
- Additional specialist helpline links: mentalhealth.org.nz/get-help/in-crisis/helplines/
This article was first published in the June 15, 2019 issue of the New Zealand Listener.
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