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Neurodiversity

Nelson mum pleads for funding as 9yo son with Asperger's told to leave third school in three years

Nelson mum pleads for funding as 9yo son with Asperger's told to leave third school in three years

Warning: This article discusses suicidal ideation.

A Nelson mum is crying out for support after her son, who has Asperger's Syndrome, was excluded from his third school in as many years because the Ministry of Education (MoE) was unwilling to provide funding to address his behavioural issues.

Rebecca* is at a loss about what to do after nine-year-old Henry*, who has severe anxiety and depression and has struggled with suicidal ideation, was dropped by his most recent school for kicking a teacher.

She attempted to get Henry some support - reaching out to Child and Adolescent Mental Health Services (CAMHS), Oranga Tamariki and the Ministry of Education - but every avenue she's tried has proved a dead end.

As a last resort she has contacted her local MP, who has agreed to meet her - but the fight to get her son what he needs has left Rebecca exhausted, frustrated and pleading for change.

'I had to ring the police on my own son'

Rebecca, a third-year social work student, first sought out support for Henry while he was at his second school.

While it was better than his first school in many ways - the school took her seriously, for one, and Henry wasn't returning home crying about his teacher every day - she was still worried, and increasingly so when Henry started becoming withdrawn, fleeing from class and talking about suicide.

She took him to CAMHS - a referral service that allows children to access specialised input from mental health professionals - but says they just put Henry's behaviour down to an adjustment disorder.

From there, things quickly went downhill. Henry started to become violent, lashing out at fellow students, and during last year's COVID-19 lockdown hit his mother for the first time.

But it was when he returned to school that "things just exploded".

"He became more and more violent, and it was quite serious injuries. I ran back to CAMHS and was banging on their door saying 'my son is going to hurt someone'.

"And then he did; he hurt children, and it got worse and worse at home… it got to the point where I ended up, late last year, having to ring the police on my own son because he was so violent, his episode was so intense."

Rebecca is adamant this isn't Henry's fault; his behavioural issues stem from his Asperger's, which makes it difficult for him to regulate his emotions and consider the best way to express how he's feeling.

"He was just a child who was so misunderstood and so overwhelmed with the world," Rebecca said.

"He doesn't quite have the time to think, 'oh, I shouldn't kick or hit' - it's like an overload, and it's got to come out - but he feels extremely bad afterwards. Once he's had his episode, he's a mess; he knows what he's done and he hates hurting people."

At this point, Henry's school opted to exclude him for six months while his mother sought help from the Ministry of Education. The ministry devised a plan for Henry's return to school, but Rebecca says staff "didn't really listen to what I had to say".

"He was being forced to go to the classroom, but for a child with autism - he's got high anxiety, sensory overload and had been out of school for six months - they weren't seeing it was wrong, and it only lasted two weeks," she explained.

"I was going into the MoE and saying 'this isn't going to work, my son's going to explode', and he exploded. He hit a teacher with a skateboard and we ended up losing that school."

Desperate for it not to happen again, Rebecca sought help from autism and child development specialists before starting Henry in his third school. She also worked closely with the principal to discuss his needs.

But "things didn't happen that should've happened", she said - there was a lack of training and support for staff - and within weeks Henry had kicked a teacher aide and been excluded again.

"It's not the school's fault, but they don't have what they need to look after him," she explained.

At the end of her tether, Rebecca went to the ministry alongside the school's principal, her father and Henry's dad to explain the predicament, pleading for support from the ministry.

She had been assured by the school that if the ministry agreed to provide funding for Henry, he would be allowed to stay on.

"I thought we'd all come to the agreement that my son needs a trained teacher aide, he needs his own space... We all thought it was agreed upon," she says.

But it wasn't to be. The ministry said they wouldn't provide funding, meaning the school had no choice but to exclude him.

'It's not fair they get left behind'

Rebecca doesn't know what the next step should be from here. She's yet to tell Henry he's been excluded from his brand-new school as she doesn't want to upset him more, but expects he'll figure it out soon.

"He's very, very smart, really intelligent. But he has high anxiety, he's depressed. He thinks he's a bad kid, which is heartbreaking as a mum - I reassure him it's not him."

Rebecca says without funding, there are limited options. For his own wellbeing, she doesn't want Henry to go to another school - it'd mean more change and new routines, and failure would be "so damaging".

Part of the problem is there are no schools catering specifically to children with Henry's specific neurological condition. He's not disabled, so wouldn't fit in at a special needs school, but he also struggles at a mainstream school without targeted support.

Rebecca says the Ministry of Education has told her she can home-school Henry, but she has no interest in doing that and doesn't think she should have to.

At a loose end and desperate for help, Rebecca has reached out to her local MP, Labour's Rachel Boyack, for assistance. She's hopeful a meeting with the politician will prompt some change.

"I'm hoping we raise awareness and get more help," she told Newshub. "People know what's actually happening. I'm not the only parent experiencing this; we know what's going on in the community.

"We've had to slip through so many cracks in every single system - the health system, the schooling system - and I don't think it's acceptable."

The Ministry of Education told Newshub it has been providing support to Henry and his family alongside other agencies, during "what has been a particularly stressful time".

"We all want to see this child learning and supported in an environment that meets their needs. We will continue to support them," said Katrina Casey, deputy secretary sector enablement and support.

But Rebecca believes schools need to invest in other forms of support, such as the creation of quiet, low-sensory environments for neurodiverse children and more training for staff.

She says the current support system is fractured.

"There isn't just one place you can go to one. One person tells you one thing, 'you can't do this', then another person will tell you 'you can do this'. There's just so much mixed information and not just a clear outline of what you can have, what help there is.

"These agencies need to work together for these children, you know? There's like multiple different departments in each agency and it just gets so messy.

"At the end of the day, these are young children who are lost in society and it's not fair they get left behind just because they see the world differently.

'Damaging cycle' of exclusions must stop - principals

In response to Newshub's Mindfields series and the Children's Commissioner's calls for schools to be more inclusive, the New Zealand Principals' Federation said schools needed more support.

President Perry Rush said it's difficult for some neurodiverse kids to find a school suitable for them - sometimes because the resources are insufficient, and other times because the environment doesn't work for them.

On some occasions, it simply becomes too dangerous for some children demonstrating extreme behaviours to remain at school.

"There are some excellent schools with suitable low sensory rooms, teachers trained in neurodiversity, and experienced teacher aides yet some of them have had to exclude a child because another child or staff member has been unexpectedly attacked and physically injured," he said.

"In one survey principals reported over 600 examples of physical violence including sexual assault, biting, spitting, hitting, knifing, stabbing and throwing objects which have harmed either a staff member or another student," he said.

However Rush says the "damaging cycle" of successive exclusions needs to stop.

"What is clear to us is that we can end the practice of exclusions from school by improving the provision and resourcing for our most complex young people."

For Rebecca, she just wants Henry to live a full life.

"I want him to have friends… I want him to be able to go to school and feel safe in the environment, be able to access education and the help he needs.

"I don't know what that will look like… but we need the right funding to get him the right help and awareness." 

*Names have been changed to protect their identities.

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