By BERN MORLEY
“Today wasn’t a good day.” This statement is delivered to me quietly and matter-o-factly by Sam, my 11 year Autistic old son, as I arrive home from work.
It’s taken me many years to refer to him as this. Autistic. I’ve clung to Aspergers, like it’s not as damning or extreme as Autism. How dare I really. Because this is what Sam is.
He is a high functioning Autistic child. He can speak, he can engage, he can look you in the eye and he can make you laugh like no other child I’ve ever met. He can do everything my other two children can do. Almost.
He can do many things my other two children cannot do. Yet it breaks my heart every day that he struggles so much in this world that you and I see so simply.
Sam is a high a functioning Autistic child. This was, up until recently, labelled Aspergers and is now diagnosed as ‘On the Autism Spectrum’. Sounds kinda daunting huh? Not really – let me tell you about Sam.
Sam is sometimes baffled and sometimes baffling, always beautiful and heartbreakingly vulnerable. He is often acutely unaware how to make friends and read social cues. I recently read a novel written by Graeme Simsion that I think sums it up beautifully – “Asperger’s is a variant. It’s potentially a major advantage. Asperger’s syndrome is associated with organisation, focus, innovating thinking and rational detachment”.
Sam is incredibly intelligent when it comes to a topic that he loves. He becomes obsessed with certain areas, and in turn, can talk about these, often, without reprieve. He will become consumed by prehistoric sharks or Minecraft or Velociraptors.
There’s no telling how long or how intense each obsession will last but a child like Sam will make it his mission to find every available fact regarding the subject of choice. He will talk endlessly and contextually about how, “If you stand a good distance away, skeletons will usually miss destroying your soul” in Minecraft or how the “T-Rex has a warm blooded metabolism’. I know far more about Jaws, Jurassic Park and prehistoric shark teeth than I ever really thought possible.
Yet, academically, he struggles with the fundamentals. He finds it difficult to read. To write. To comprehend in the most conventional of ways. Trying to do so comes with large amounts of fruitless hard work, difficulty and tears.
Handwriting is painfully laboured and he is a good two years behind his peers in most acceptable areas. He has an obvious difference in his social ability and general physical gait. I don’t say any of this as an estimate, this is all measured fact.
He gets bullied. Daily.
Sam is eccentric and sweet and engaging but I know, as a parent and as possibly his biggest fan, he can also be annoying. See Sam will relay a joke and it may be vaguely hilarious in an 11 year old kind of way, the first time around. After the 14th or 15th time however, it just becomes grating. And whilst we try to tell him to say it once and see how it lands, he just doesn’t get it.
He’s the kind of kid that is engaging for a little bit, but then, to a peer, his awkwardness, his physical differences, his extensive vocabulary, they become a sticking point for those kids that just need a soft target and I guess, if someone told me the same joke 15 times in a row, I’d get kind of ticked off too.
But being an adult, I’d politely (and I do) tell him that, “that’s enough now”. But Sam wants friends. And the fear of being disliked is greater than the fear of being physically harmed. He has often come home with bruises from being pushed, choked, punched or tripped over. Upon asking him if he has reported these to his teacher, he tells me that no, he doesn’t want to be a “dobber” and for his friends to no longer like him.
The last time I wrote about Sam, we were experiencing difficulty at his mainstream state school. They, in not so many words, told us that his current school was not the “school for him”. Subsequently he has been tested, educationally and medically. All results put him, basically, in the “too hard basket”.
To gain an aid in the Victorian School System, he requires to test 70 or lower. He scored a 74. Too high to access funding yet clearly too low to function without it. Let it be understood that a score of 70 is considered to be intellectually disabled. So… Yeah. Medically, they tell me if I could have him labelled with some kind of behavioural disorder, he’d get help.
If he had some kind of chromosomal issue, again, help. It appears, in this flawed system, if I can’t somehow make him 4 points more disabled, consistently naughty or chronically sick, then there will be no help for Sam. Ridiculous? You betcha.
The thing is, after speaking with so many people, I know I’m not alone. Not one of us are trying to gain any kind of advantage over another child by asking for a part time teacher aid in the classroom, we’re simply asking for the basic fundamentals every single Australian child should expect and receive – the chance, support and tools necessary to learn to read, write and progress in life.
This is where, as a parent, it gets so freaking frustrating. I have three children, all at State schools. I went to State Schools. My husband attended Private Schools.
The provider has never been an issue, the fact that children, regardless of wealth or privilege, should be able to access the education they require, is the issue here. What the hell are we all working for, contributing taxes to a government for, if not primarily to educate our future generations?
Sam has always been asked, whether it be in Victoria or Queensland, to quietly forfeit his right to sit the Naplan test. Isn’t the Naplan meant to indicate exactly how the students in each school are performing?
Isn’t this system completely flawed then, if the less than academic students are being asked to “sit this one out”. Isn’t this why the correct funding isn’t getting recognised and/or at least questioned?
I’ve done my research on Gonski. I know it’s not perfect, nothing is, but at least it’s a great start. It’s asking for transparent funding. Funding from the government to be directed where it is needed most. This year is important, it’s an election year. I don’t care who you vote for, I don’t care who you’ve ALWAYS voted for. Can you do this, can you just look into what each and every party intend to do with education and disability?
We, for the first time ever, I believe, are suddenly on the front foot as voters. For the first time ever, in this new world of social and digital media, with instantaneous access and response, can loudly dictate the issues that we see as the most important.
Because quite simply, if we get this right now, we will allow all children, regardless of wealth, education or privilege, a better chance at life.