Waikato whānau in crisis frustrated at lack of effective help for young son with severe, complex behavioural needs

Warning: This story may be distressing for some readers.

For parents and whānau of tamariki with severe and complex behavioural needs, it can be like living in a warzone. Often these children can present a danger to themselves, as well as others.

One south Waikato mother describes it like this: "I feel like I'm in a domestic, violent relationship with a son I can't escape. My great fear at the moment is that someone's going to die. That's how serious our situation here at home is." 

She is speaking out to The Hui, frustrated with how hard it is to access the help she desperately needs for her 11-year-old boy.

"He's our little superhero. He just deserves a good chance at life. That's what I'm fighting for," she said tearfully.

The Hui has agreed not to name the mother or the family members.

All three of her children are on the autism spectrum. Her struggle is compounded by the fact that one of her sons also has complex behavioural difficulties.

He's been diagnosed autistic since the age of four and also has attention deficit disorder and global development delay, which means his cognitive skills are of a much younger child. His violent behaviour started early, at around five years old.

"He would be violent towards his brother. He would look at his brother - 'Oh, I haven't hit you today' and he would go and just blatantly smack him in the head. It could be any trigger for him and he can go zero to a hundred quick smart, and we're now dealing with knives. He has been seen to grab a knife and attempt to stab his siblings and at one point, he has been seen to stab himself," explains his mother.

There is no question that this boy is crying out for help, but because he's still under 12 he's considered too young to be properly assessed for his mental health and he's too young for many of the places that deal with children with severe behavioural disorders. 

His mother said she's had no choice but to capture his violent outbursts on camera in her desperate bid for help.

"If I capture it and show the right people, hopefully they'll listen and see. But now he's getting more violent and the incidents are becoming more dangerous, more volatile. It is scary, it's real," she said.

The whānau has received financial assistance and engaged with more than 20 agencies over the years. The mother has also tried parenting courses and various family therapies in search of ways to better manage her son's behaviour.

But the whānau said no one agency has joined the dots and come up with an effective plan her boy so urgently needs. 

Over and above his autism, this mother is convinced that her son's behavioural problems are related to his mental health. But a lack of coordination among services means it isn't being prioritised.

"Trying to access those supports, we're finding it really hard and it's either because of his age or where we live," she said.

This year the whānau received 60 days of respite care, which they used to give themselves a break for a few days at a time.

"It is just a band-aid, really. We're hanging on by a thread. We're doing the best that we can," she adds.

His behaviour has been assessed as putting others at significant risk and the whānau has been so desperate that they've made numerous reports of concern to Oranga Tamariki and Police since September 2021.

She's scared that the issues with her son could see her lose all three of her kids.

This mother said she's left with no choice but to go public - desperate to get help before her worst fears are realised.

"The lengths I've had to go to just to be heard. We are at the media now. Are we going to get the help? Is this going to make a difference? 

"He's a beautiful boy. This is not just about me either. You have plenty of families out there living the same nightmare who don't have a voice," she said.

Since filming with The Hui, the whānau felt the only option left was to sign over care for their son to Oranga Tamariki.

On June 30 the child was prioritised to be a part of the Intensive Wraparound Service, or IWS - a support for young people aged five to 14 who have behavioural, social and or learning needs that are highly complex and challenging.

The Waikato District Health Board has acknowledged the difficulties whānau face in navigating a number of agencies when seeking help and said it is working with the agencies to improve this

Dorothy Taare-Smith is an advocate for children with autism and their whānau. Last Thursday she facilitated a hui with Oranga Tamariki and agencies involved with the family. She said the family wants their boy home, but they and agencies told Oranga Tamariki home is not safe for him until there is support from a transition plan and a crisis plan.

"Right now this young man is in the custody of Oranga Tamariki and he is currently staying in a motel with two support workers or carers," she said.

"Mum has shared with me that she has been in state care, and it wasn't a good time for her so she's worried about her boy."

Child and adolescent psychiatrist Dr Hinemoa Elder told The Hui host Mihingarangi Forbes that in her experience, the most effective and healing support for such children and their families comes from having one person who works with them, and who is the point of contact for all the other services.

"Without that, you have very little."

Dr Elder said tamaiti grappling with developmental delays affecting their emotional growth use their behaviour as a communication. She called for more people to be trained as respite caregivers.

Made with support from Te Māngai Pāho and the Public Interest Journalism Fund.