Doug and Korinna Edwards share a family moment on the beach with their children Indigo (3) and Kalden (9 months).
Doug and Korinna Edwards share a family moment on the beach with their children Indigo (3) and Kalden (9 months). Alistair Brightman

The harsh reality of autism

TRACEY Amodeo's tears tell the real story of autism.

They speak of a mother battling against impossible odds, a mother with three, of her four kids, diagnosed with some form of autism.

"There are times where I just think I can't do it anymore," she explains.

"There are times when I'm just so tired, I don't do anything for myself."

How Tracey makes it through a day caring for these children is anyone's guess.

Christian, one of her younger boys, struggles the most.

He is a boy of almost seven and much bigger than other kids his age. His hair is a light brown colour combed forward, his skin a soft white sprinkled with light freckles.

He hardly looks like a child any different from others - but he is.

Christian's autism means he will probably never experience the beauty of friendships, will never feel the bonding love of a partner.

His autism is so severe it keeps him from speaking. He has never said "I love you mum". And probably never will.

He still wears a nappy, and might do for the rest of his life.

He barely sleeps, eats only Vegemite scraped on white bread or salt and vinegar chips, and drinks only apple juice from a baby's bottle.

One interesting aspect of his condition are his compulsive needs.

He has a set of toy cars that are always assembled in the same order and in a straight line on the kitchen table. His brother sometimes messes them up to torment him. But brothers are like that.

Christian's condition demands routine and even then the smallest thing can lead to a "meltdown".

He will bang his head on floors, against walls, whatever is near.

The thing about a meltdown is they can happen anywhere - in a shopping centre, in the car on the way out the driveway, they can even happen at school.

"You can't stop them," Tracey says.

"They can last all day."

The story of how Christian's condition was triggered is also unique.

"He went in for his immunisation, his measles, mumps and rubella, just before he turned two," she explains.

"That night he had a really nasty reaction to the needle, on the site (where it went in) there was a big lump that went really red and he had really high fevers.

"Within days of him coming out of that fever he lost all his speech, everything, he just fell into his autism."

Doctor's disagree routine MMR injections trigger conditions like autism but Tracey is adamant, Christian has never been the same.

For her, the lack of support is most troubling.

She says there are no clear pathways to cater for people with autism.

She says people and governments need to act. She says autistic boys and girls deserve their own schools, to help them become independent, at least, give them a chance.

This constant fight for fairness is about the only thing that keeps a faint flame of hope alight in Tracey's heart. That, and a belief her prayers of one day finding a cure will be answered.

In a suburban Hervey Bay townhouse, Doug Edwards shifts about behind a coffee machine.

Steam shoots from a milk wand. Aromas from a fresh grind scent the air.

The roaring and groaning from the machine has Doug's kitchen sounding more like a metalwork factory 10 minutes before knock-off than a room where meals and coffee are made.

Doug is a 30-something married father of two, and a singer - he loves to sing.

A few years ago his life was much different. He was a student at Queensland's Conservatory of Music, he was going to be a star.

As Doug sits down across the table in front of me, coffee in hand, he explains how it all changed.

"We just knew," he says, of his little girl Indigo having autism.

"And as soon as we suspected and thought about it, there was that period of 'oh God this is terrible', but then it was like 'okay what can we do'."

Doug and his wife Korinna approach Indigo's condition in a way that shows their strength of character.

They speak to me calmly across the table about her tendencies and nuances.

Yes, there are difficulties, many of them. And yes, they know she may be in their care for a lifetime, yet, they find a way to appreciate that.

Sure, she has her own meltdowns, and sometimes it can take a whole day just to have a conversation of some type with her, such is the infrequency of her verbal communication.

But there is hope, a certain appreciation for the amazing journey they are undertaking, together.

While Tracey Amodeo has three children with some form of the condition, one about as bad as it gets, the Edward's have only one autistic child, whose future holds much hope. Indigo attends childcare centre AEIOU, a centre that treats only autistic kids.

There, she has regular one on one time with trained support staff, she does learning activities designed to improve her ability to communicate, she interacts with other kids.

Doug says the centre has given Indigo a chance, given the whole family a chance.

"Some key things, just small things..., she has on a number of occasions as I've gone to pick her up said, 'I missed you'. She has even said 'I love you' to me a few times."

Those are words some parents of autistic kids never hear. Those are words Doug never thought he would hear spoken, ever.

The tears Doug fights to hold back while he's telling me all this, the smile etched on his face, it adds something to the story of autism, it speaks of hope for autism.

 

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