Family’s plea for help to keep son with severe autism at home

LOVING: “I know he loves us – he can’t say it, but I know he does.” Mum Martina McNeill is asking for greater funding to allow a safe space to be built for her son, Alex. Picture: DARREN HOWE
LOVING: “I know he loves us – he can’t say it, but I know he does.” Mum Martina McNeill is asking for greater funding to allow a safe space to be built for her son, Alex. Picture: DARREN HOWE

A year ago Bendigo woman Martina McNeill would have never thought about giving up her child.

But out of options and driven by extreme exhaustion, she was faced with the heart-breaking decision.

Her other four children were suffering, her marriage was suffering and she didn’t know what else to do.

“We rang child protection and said we need to relinquish,” she said of her eight-year-old son Alex.

But they wouldn’t take him.

Alex has severe autism and a raft of other disorders including severe sensory processing disorder and obsessive compulsive disorder, requiring constant care. His condition is so challenging that no respite centre will take him and his parents have been through 12 support workers in the past year.

His National Disability Insurance Agency plan doesn’t provide enough funding to sustain the level of care he needs and at this stage, they anticipate they will run out of funding by early next year.

“We won’t be here in six months if nothing’s changed. There’s no way,” Ms McNeill said.

The family doesn’t want to give up Alex, but say they will have no choice if they cannot get extra funding.

An extension to their White Hills home would allow them to create a calm, safe space for Alex that he needs every day, as well as for the rest of the family.

But they feel their plea for help will lead no where.

Desperate to help, family friends have rallied behind the family and called on the community to help raise the money they need.

Greater funding needed for Alex’s care

Alex McNeill will never get married. He will never hold down a proper job, and he will never form relationships.

These are the things mum Martina McNeill used to cry herself to sleep over. But she doesn’t anymore.

“It’s probably only been the last two birthdays that I’ve been able to handle,” she said. 

“Because when you get to a birthday you think, he’s six and you know what other six-year-olds are doing and he’s nowhere near it. 

“And so many nights where you cry yourself to sleep because autism’s stolen your child.”

Eight-year-old Alex has been diagnosed with autism spectrum disorder, intellectual disability, severe sensory processing disorder, obsessive compulsive disorder and infection-induced autoimmune condition PANDAS – or paediatric autoimmune neuropsychiatric disorder associated with streptococcus.

He’s too young to be diagnosed with bipolar disorder, so for now it’s just “mood swings”, and although the ADHD diagnosis has never been written down, his doctors say they’ve never seen a child so severely affected.

In his White Hills home, there are locks on the doors and cupboards, smash-proof glass in his bedroom window and pictures strung up to allow Alex to try to communicate.

Glossy pages lay torn on the floor as Alex loves to shred the magazines kindly donated by a local newsagent. Sometimes it’s 60 magazines a day.

“He went through a phase last month where I couldn’t turn on the tap unless he let me,” Ms McNeill said. 

“The microwave lives in the living room because he goes off his nut if we use the microwave.”

SAFE SPACE: Martina McNeill says the family needs more funding from the National Disability Insurance Agency to provide the care Alex needs. Picture: DARREN HOWE

SAFE SPACE: Martina McNeill says the family needs more funding from the National Disability Insurance Agency to provide the care Alex needs. Picture: DARREN HOWE

Alex is one of six of Ms McNeill and husband Rod’s children and requires constant care. 

He rarely wears clothes and once spent nine months naked and didn’t leave the house.

In his bedroom, there’s no bed, curtains or curtain rod as in the past he has tried to swing from them into the window. 

For now, he sleeps on a mattress on the floor as he has broken every bed he’s had and has a lock outside the door so his parents can keep him safe at night.

Some nights he doesn’t sleep at all, keeping the rest of the family awake with his screams or squeals. 

“We need sleep on a more regular basis than we are getting now,” Ms McNeill said.

“We don’t even have dinner as a family anymore. We used to be so incredibly close as a family and over the last few years it’s just all gone out the window.”

The McNeills have asked the National Disability Insurance Agency for more funding to allow them to build a safe space for Alex and to increase his support worker hours.

They say an extension on the family home would give Alex a specially-designed wing of the house, and a much-needed break for the rest of the family. 

And because of Alex’s high needs, no respite centre will take him, even for a short period.

“We can’t take him somewhere for a night or two to get a break,” Ms McNeill said. 

“It’s physically impossible because no one that I have found will take him.”

Out of options, and after months of sleep deprivation, the McNeills were faced with a heart-breaking decision: relinquishing Alex into state care.

“We rang child protection and said we need to relinquish,” Ms McNeill said.

“They can’t take him. They don’t even want to talk to me about it. They keep telling us there’s nothing they can do.”

Marie McNamara, a private mental health social worker, who has worked with the family, said she received the same response from various agencies.

“Wherever I went to there was an answer why they would not consider permanent relinquishment. We just went round in circles and we got nowhere,” she said.

“You’ve got a family that is imploding. They’ve been pushed to a cliff.

“The agencies that are there to help are not helping.”

At a loss of what to do, the McNeills have even thought about dragging Alex kicking and screaming into child protection services and leaving him in their reception.

“That would be so traumatic for him – he’s never going to get in a car again, he’s never going to trust anybody again,” Ms McNeill said.

“If they found somewhere for him to go and we could take him there, that would be one thing. But doing that, dragging him into this office, he’s just going to go absolutely mental and undo any good work we’ve done over the years.”

In August, Ms McNeill had a breakdown with the constant toll caring for Alex was taking on her life and that of her family’s.

“I’ve put Alex first for so many years that my marriage has suffered, my other kids have suffered,” she said. 

“We even talked about splitting the family up but we can’t afford two houses.”

Ms McNeill says it’s not a question of is it worth it? – “Of course it’s worth it”.

“But the others are missing out. I’m missing out. My husband's missing out.

“I just feel like a crap parent. I know I’m a good parent under the circumstances but I want to do more for them. They deserve more.”

HELP NEEDED: Alex McNeill needs constant care but his mum says he's a gorgeous boy with a lot of potential. Picture: DARREN HOWE

HELP NEEDED: Alex McNeill needs constant care but his mum says he's a gorgeous boy with a lot of potential. Picture: DARREN HOWE

While Alex got his first diagnosis just before the age of three, it wasn’t until November 2015 when he had his first PANDAS flare that his behaviour escalated. 

“After that he was a completely different child,” Ms McNeill said. 

“He started self-harming, he started hurting other people, he would just easily get upset.”

Any progress Alex had made previously went out the window and the McNeills ended up in the doctor’s office seeking medication for their son.

But this was only the beginning as no matter what medication they tried, relief was only temporary and Alex always reacted severely to the drugs.

Thousands of dollars were spent on testing and Alex saw health professional after health professional but it got him nowhere.

Ms McNeill says the NDIA funding Alex is currently receiving is good, but it doesn’t allow for the amount of hours he needs with a support worker – at least 34 hours a week.

At this stage, they anticipate they will run out of funding by early next year and are worried their plea for funding for an extension will go nowhere.

“We won’t be here in six months if nothing’s changed. There’s no way,” Ms McNeill said.

“We were at the point when he was on the medication and reacting so badly that Rod and I were there just going, ‘We can’t do this’.”

It was a thought that Ms McNeill says also crossed Alex’s grandmother’s mind.

“What parent and grandparent has to get to this point?,” she said.

“Because I know how unhappy he would be in care. I know just how hard this would be for him. 

“I know every day for the rest of my life if he’s not here I will be thinking what a s*** parent I am and how can I possible do this to my child.

“I just feel like we are destined to be on our own and I’m a very strong person but there’s still only so much that I can do.”

A spokesperson for the National Disability Insurance Agency said Alex’s plan was under review and would take into account the whole of family circumstances.

“We understand the concerns of the family and will continue to work closely with them,” they said.

“The time taken to complete a review varies, dependent on the individual’s circumstances and the complexity of their situation.”

A spokesperson for the Department of Health and Human Services was not able to comment on an individual’s case for privacy reasons.

“We aim to give families – including those with children with a disability – the support that they need to provide a stable home environment,” the spokesperson said.

Friends rally to help support Alex and his family

Seeing the lengths the McNeills had gone to to care for Alex, family friend and Bendigo resident Jen Andrews started an online fundraiser to help raise money for the extension without government funding.

“Help needs to come from somewhere, and no government agency seems to be stepping up to the plate,” she said.

“They love him so much, and have given everything they have mentally, emotionally, physically and financially.”

In four days, the GoFundMe account has raised more than $5000.

“I would love to see the people of Bendigo come together and support this little boy and his family,” Ms Andrews said. 

“I have seen in the past week how much people can care for complete strangers. So many people out there want to help, it's just a matter of co-ordinating a plan to make it happen.”

Other friends are contacting local builders and home improvement shows in the hope of finding people to carry out the work.

For Ms McNeill, she just wants to be able to provide the care Alex needs.

“I know he loves us – he can’t say it, but I know he does,” she said. 

“Every day, somewhere in the day, we will get some tickles in and we will get some laughs.

“He loves nursery rhymes so we sing together an awful lot. He gives me hugs, he lets me kiss him, he puts his head down and I’m allowed to kiss his forehead.”

There are the moments, the small treasures in each day that make Ms McNeill’s day.

“He’s a gorgeous boy with a lot of potential, if only he could have the help to see it.”

To donate money, visit www.gofundme.com/fundraiser-for-alex-mcneill