MAX has always been prone to violent outbursts as a result of severe autism, but now he is getting too strong for his parents to control.
IT’S a gut-wrenching choice. Do you risk the safety of your family, or make the heartbreaking decision give up one of your children because of actions that are beyond his control.
Victorian parents Liz and Sean Whelan, both 43, may have to face that dilemma if they can’t find a way to keep the rest of their children safe from one of their son’s violent outbursts.
Their son Max, almost 12, has severe non-verbal autism as well as an undiagnosed intellectual disability, which often makes him prone to destructive meltdowns that turn the Whelan’s home into a war zone.
His mum says he doesn’t fit with people’s perceptions of autism.
“He is unpredictable. One minute he will be aggressive, hitting and punching anything he can reach, and the next he will be like a cuddly two-year-old,” Liz told news.com.au.
Max lives with his parents and three siblings, Thomas, 13, Harrison, 9 and Georgia, 7, in Mount Martha on the Mornington Peninsula.
Liz and Sean Whelan with their children Georgia, Max, Thomas and Harrison, and pet dog Kimba. Picture: Katie BrannaghanSource:Supplied
Since Max was diagnosed with autism when he was 20 months old, his family has tried countless therapies to make sure Max has the care he needs.
“We have tried everything from specific diets and oxygen chambers to countless therapies and medication. It has financially ruined us,” Liz said.
“There is not enough awareness for this severe level of autism. It’s not something that’s looked at in Australia and, there is no understanding of how to deal with it.
“My biggest fear is that we will be forced to relinquish Max to the state and have no rights.
“I won’t know where he will end up or what they will do with him. I worry that he will end up in a psychiatric ward somewhere and filled with medication.”
Four separate times in 2015, Liz and Sean had to consider giving Max up because they couldn't afford to continue caring for him.
“We eventually got some funding but there is a strict criteria on how we can spend those funds that just don’t cater to Max’s needs. We need flexibility,” Liz said.
In one incident a few years ago, Max became increasingly aggressive and violent.
“We noticed a change in his behaviour at around Christmas 2014. He had quite severe tooth pain but it took a while for us to figure out what was wrong because he has no way of telling us.
“So because he was in pain, that was the trigger for an outburst.”
These outbursts have become more and more frequent and he is increasingly hard to control. He often needs physical restraint so he doesn’t hurt himself or anyone else.
“Our whole family lives on lockdown. We have locks on every window and door in the house. He will try to escape whenever he can,” Liz said.
“We have had a few police searches for him which is terrifying because he has no sense of road danger.
“We all live at an extreme level of anxiety all the time.”
Max can be a very affectionate, sweet boy but is prone to violent outbursts when he is frustrated. Picture: Katie BrannaghanSource:Supplied
The family has learnt to avoid certain trigger words. Simply saying the word “no” can cause a meltdown. When that happens, anyone in his way is a target.
“Usually I am the one getting hit, but he has figured out now that if he hits the dog or his little sister then we all react. And he likes getting a reaction,” Liz said.
One outburst that sticks out in Liz’s mind occurred while they were driving to a respite facility they often visit.
“I was driving him up there and his sister, who was six at the time, was in the car seat in the back. He was in a good mood. We had shown him pictures of where he was going and he seemed calm,” Liz said.
“We were driving along the freeway at 100km/h when something triggered him. To this day we still have no idea what it was. He completely snapped.
“He turned around and started belting Georgia in the back seat then climbed on top of me and was hitting me.
“I managed to pull over and had to physically push him off me. Georgia was crying and we both had to jump out and lock him in the car.
“Every time I got back in the car he would start hitting me again.”
They had to keep Max locked in the car until Sean came and was able to restrain him until he calmed down.
Liz said that because Max knows he is now physically stronger than her he will often lash out at her, but if Sean is there he will often be calmer because he knows his dad can overpower him.
“I don’t ever take him out on my own anymore because he will immediately act out and I can’t control him,” Liz said.
“He will do all kinds of things out in public. He will take off all of his clothes because he has no idea about what’s appropriate and what isn’t.
“These things are really frightening to me and my husband, especially with young children in the house.”
Liz and Sean are hoping to turn their home into a private care facility for Max. Picture: Katie BrannaghanSource:Supplied
It isn’t just Liz and Sean that are impacted by Max’s behaviour, with the violence being so bad that all of the children have coded locks on their doors so they have a safe place to hide.
“Max only cares about Max,” she said.
“And we know that he loves us as his family and we love him, but it is always his needs get met or else.”
At just 13, their eldest son Thomas has taken on the role of protector while Sean is at work to prevent Max from hurting himself or the rest of the family.
Harrison has severe anxiety and low self-esteem as a result of his brother’s outbursts. Georgia is scared to go into her own home when Max is around.
“They have all been physically hit by Max and it is incredibly psychologically damaging as well,” Liz said.
“I am so proud of all of them and how they take everything in their stride but they shouldn’t have to live in this environment.”
Even though Max’s behaviour takes a toll, his family all love him to bits and the last thing they want is to be forced to relinquish him.
He is a dearly loved member of the family and can be very affectionate, but Max’s complex condition means that he lashes out in frustration.
Liz and Sean know that it is only a matter of time before Max seriously hurts himself or someone else, but with no facilities or government options available to cater to his needs on a permanent basis, they have had to come up with an alternative plan.
The Whelan’s family members - including former Neighbours star and Hollywood actress Nicky Whelan who is Sean’s sister - have set up a GoFundMe campaign to help them convert their family home into a care facility that will meet Max’s specific needs.
They have managed to raise over $48,000, with the funding going towards employing specialist carers for Max and allow the rest of the family to move into a small rental home nearby so the other children can have a safe, peaceful home.
Liz and Sean will still have regular contact with Max and oversee his care.
It will also allow them to fit the house out with the necessary equipment like security fences and non-slip surfaces to ensure Max’s safety.
The recent story about the young autistic boy who ran away from his carer and was hit by a train really hit home for Liz, as Max has had multiple escapes from the home.
“Just after Christmas was our latest police search because Max escaped from the house.
“He managed to get out of the laundry door which is always locked and never used, so we have no idea how he managed to open it.
“There was a search and Max was found running down to the road, barefoot, in the dark at 9pm.
“It is only a matter of time before something like that happens to us unless we get help.”
Editor's note: Victoria has an Office of Professional Practice with a Senior Practitioner in Disability. Has this office been involved in this particular situation? What did the Office do to address/resolve the issues in this matter? If the Senior Practitioner can't solve this situation and others like it, then is that approach appropriate for the impending national Quality and Safety Commission?