'Where do we turn?' Mum of high needs boy with neuro condition says 'helpless' families are crying out for more support

Getting people to understand Brody's neurological disorder and the impact it plays in his life is important to mum Sam (pictured left).
Getting people to understand Brody's neurological disorder and the impact it plays in his life is important to mum Sam (pictured left). Photo credit: Supplied / Getty

When Hawke's Bay mum Sam finally received a long-awaited diagnosis that her young son, Brody, had Sensory Processing Difficulties this year, it brought a feeling of relief. 

After desperately trying to find a 'why' behind reactions noticeably differently to his peers in everyday situations, she finally had an answer that could open doors to therapy to help.

But finding funded programmes and services available has been a nightmare, being put on long waiting lists for the ones that do exist.

She's opened up about the struggles her family have faced in their fight to get Brody help and the isolation she's felt by other parents along the way.

For seven-year-old Brody, a condition affecting how he perceives the world around him has a profound effect on the way he regulates emotions and responds to situations. 

He lives with Sensory Processing Difficulties (SPD), which makes the way his senses take in information different from his year 2 classmates. 

Every sense is heightened to the point where an everyday experience, like supermarket shopping, is difficult or impossible. He can become overwhelmed in large spaces with echoes or lots of bright lights dominating his ability to focus.

Brody takes risks without thinking, like being too hot in the car so trying to jump out while it’s moving or trying to climb the railing of a three-storey mezzanine, as he doesn’t have an understanding of consequences.

Every tiny scratch is met with the intensity of a broken bone, toilet training is still on-going and shopping malls are a definite no. He’s had seven ACC claims at Sam's last count.

Clothes become too itchy, so pyjamas are the go-to as soon as he gets home from school. Toothpaste is too "spicy", while bland food has "too much flavour". He doesn’t like to be alone and rarely plays solo, requiring more attention than most toddlers. 

Getting people to understand the neurological disorder and the impact it plays in Brody's life is important to Sam. 

She says Brody is a sweet, kind child, but has to work very hard at relationships because he misses social cues and craves affection, however, sometimes this blurs boundaries for him. 

"The callousness of some parents' behaviour towards him in regards to this especially has been tough."

During Brody's time at a kindergarten in Napier, Sam says other parents were quick to judge, and he was treated "like a criminal" during an investigation into his behaviour. 

Newshub understands observations of children may be undertaken by teachers or, with parental consent, other agency professionals, as a way of identifying and assessing their needs. 

Sam says the process was "ridiculous and heartbreaking", putting her in a really "dark space" at the time. 

"There was were a couple parents who went around telling other parents that my child was 'evil' and made up rumours about him of things that never even happened," she says. 

"It was actually one of the worst things I have ever been through." 

Sam noticed differences between Brody's development and her first child's early on. But when she raised it with his GP she was told there was a long waitlist. When she was finally seen by the Child and Family Services, she was told there was no help available and she should attend a parenting course. 

"I felt patronised and like a bad parent. I carefully reworded my concerns and said I had noticed some sensory issues, and that finally triggered a response – a response to a question she was never going to ask me."

Three years on, Sam is making an emotional plea to Jacinda Ardern for increased resources and easier access to children’s mental health services. 

The mother-of-two says she has networked with a large number of families in the same boat and says families are at breaking point, and more occupational therapists and child psychologists are vital for barriers to be removed for those requiring help. 

"We feel unheard and unsupported," his mum says. "These children are growing up to be adults with real problems that could have been helped from childhood."
"We feel unheard and unsupported," his mum says. "These children are growing up to be adults with real problems that could have been helped from childhood." Photo credit: Getty

She says the ability to access what is currently available is difficult because the criteria to be seen is tough to fit into, wait times to see a specialist have made a tough time even tougher and can be very expensive. 

She struggled for four years before even being taken seriously, with nowhere to go in the interim other than parenting courses that are not aimed at helping high-needs kids. 

"The system overload then causes the criteria to meet too high, as they are already struggling and have to prioritise the critical children, which by that stage is often too late - as it affects the whole family. By then children have been kicked out of schools, and families are in crisis.

"Knowing you are struggling as a family but having no one take you seriously until things are dire can’t be the way this system is supposed to operate.

"We are constantly fobbed off and made to feel crazy for asking for help. Resources are too low and demand is too high. There is no respite care without a diagnosis - and even with one, it has to be the right 'kind'. When our children are harming themselves or others, where do we turn?"

Sam says she tries her hardest to make life as easy as possible for Brody. The family has to plan every outing carefully and tailor it to his needs on the day, as often they don’t know what he will react to.  Doing things spontaneously often doesn’t work for Brody, which can make it hard if plans need to change.

Routine is key; if something changes that he hasn’t been warned about, "full-blown meltdowns" are likely - especially after a long day of trying his hardest to sit still and follow the rules at school. 

Sam says this can consist of running away from school or home, throwing furniture at the windows, or punching his mum in the face. Therapy has made these meltdowns much more manageable by giving parents the support and knowledge to try and minimise them.

"Mental health care should start at the bottom. I have many families with stories like mine."
"Mental health care should start at the bottom. I have many families with stories like mine." Photo credit: Getty

But they can't do it on their own, and Sam says it's distressing how difficult it has been to access services that can help. 

She says the system urgently needs to change to ensure Brody and other neuro-diverse children have the best chance to lead full lives. 

"We are trying to do the very best we can for our kids. I have had to fight so hard to even make it to an appointment where someone would listen to my concerns, and after listening, initially told me they couldn’t help me."

Sam says some days, it’s like walking on eggshells for the entire family. Time off work increases, relationships suffer within the home and outside the home as other families often don’t understand. 

"Families with neuro-diverse children are crying out for support, it takes an enormous toll on them, they are divorcing through the pressure and once these kids get it in their head that they are 'bad kids', it’s hard to remove that view from them," she explains. 

"It also can alienate us from friends and family who simply don’t understand, leaving us to feel like we are failing our kids and are judged for not living up to their expectations, which creates a low sense of self-worth in both the children and the parents.

"Constantly fighting and advocating for our children means we are always in battle mode."

She says dealing with children being kicked out of schools, and there isn’t enough support at home. 

"The mental health of the parents living with these children and managing their day to day needs is declining. Families are breaking up. I have never experienced anxiety as an adult until having a high needs child." 

"I talk to other families all the time. This is not just mine and Brody’s story, it’s theirs too. There are the parents who can’t afford private treatment, who won’t know where to look, who are struggling, who may just be blaming their parenting, or their 'naughty' kid."

Above anything, she says there is a strong need for more mental health services and for them to be fully-funded. 

This year alone, Sam's spent roughly $2000 on mostly unfunded therapy and treatment for Brody. 

She says this has put a huge financial strain on the family, but they are still doing as much as they can to get him the care he needs.    

She says a huge number of families don't have the $85 a week it costs for private therapy, and there needs to be education for teachers and schools trying to deal with so many neuro-diverse children, especially for SPD as it’s a condition that most teachers are unaware even exists. 

"The teachers are often stretched to their limits on being able to offer support. Brody does not qualify for extra support at school as the criteria is very high. There seems to be a grey area that many kids fall into even in the school system."

She has launched a petition asking the Government to encourage more training in the system to help decongest the system. 

"Brody is such an incredible child, and with the right help, he’s going to be a fantastic adult. But the system is failing our kids. Every child deserves to have access to the help they need. If you fail a child right from the get-go, why would they turn to the health system as teenagers or adults at breaking point?"