Tuesday, April 30, 2013

The Importance of Being Sam

“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, skeltons 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 or wealth, education or privilege, a better chance at life. 


knitwit said...

I wish you and Sam all the best with this. I'm lucky to have one child severe enough to get full funding, and one so high-functioning he rarely requires any intervention (though I never hold my breath on that one!). Having a child somewhere in that no-man's-land, and unable to access what you need, must be incredibly frustrating. Hang in there!

nikkimoffitt said...

'You will love the US - they have to help you there' - famous last words by someone. 'Just on the edge', say the teachers, 'he wouldn't qualify for public funded testing but if you do private testing we might be able to get him some 'parent directed' intervention thingy, budgets are tight and reducing'
The budgets here are on a County level and often involve parents engaging legal representation at a maximum and professional Advocates at a minimum to ensure their children get what they entitled to under State and some Federal Laws. Its a frickin' jungle.

I have spent so much energy in the last three months trying to understand the system here I haven't even looked into the upcoming election and policy 'at home'. I shall do so in time to make my considered vote in September.

I also hope someone invents common sense pills because I would buy a shitload of them - for my child. (I know that was not the reference intended but it reminded me)

thehungrynavigatrix said...

Thank you for writing this Bern. I too know way too much about prehistoric sharks as it happens. The fact that we have to constantly advocate and go into battle for our children indicates a very broken system. We can only hope that good sense prevails and radical system changes such as the NDIS and Gonski become a reality.

Kylie said...

I'm so sorry Bern- it shouldn't be like this. The system should be helping you care for and nurture and extend your children, not making you fight for them... and that bit about NAPLAN makes me furious. Hugs to you all... though I'm all too aware that you'd prefer a bit of funding. xxx

styleunearthed said...

A fantastic post, Bern. What a wonderful advocate you are for Sam. As a teacher, the current funding model is so incredibly frustrating. As you said, Gonski isn't perfect but it would give us so many more options to be able to help children like your Sam. I hope every day that it will become a reality, and we no longer have to feel as frustrated with our current situation.

Twitchy said...

Great post Bern, I'm so sorry Sam has had to endure not only an inadequate educational experience but the mean treatment on top is just such an incredible insult. You know we live this too.

Though you and I come at this from slightly different angles we still want the same things for our sons. (For instance my son would find NAPLAN too stressful and pointlessly modelled for him so I happily opted him out.)

The funding issue is a disaster and won't change too soon. Last night at school I attended a session for parents of kids with all manner of learning differences. The resources are not there, but at least community and awareness are building and in the immediate term, helps us to know we're not alone.

Twitchy said...

And, I should add, our voices are stronger together.

Benison said...

Hi Bern,

Thank you for your beautiful heartfelt post. I know your boy is way smarter than that 74 score indicates - IQ tests always underestimate the intelligence of kids on the autism spectrum - but that doesn't mean Sam doesn't deserve the help he needs to succeed academically and socially.

Do you have a good psychologist, who specialises in autism, for him? Highly recommend it. My boy sees a gorgeous girl once a fortnight to work on social skills and anxiety management. You can get 10 Medicare-funded visits through a Mental Health Care Plan and another 5 through a GP Management Plan (EPC) which helps hugely with the cost.

I agree with Kylie about the NAPLAN - by asking the 'low achievers' to sit it out schools are defeating its intended purpose - to direct funding to those who need it most! The system is surely broken. Bring on Gonski and the NDIS. Ben xx

Jan said...

Hello Bern - I have read your blog for maybe 3 years and always enjoyed reading it. But, this post is exceptional. I am a 65 year old Grandmother and I have been fortunate to have kids and grandkids with no learning or physical difficulties. But I absolutely recognise the need for Gonski and the NDIS. These two things alone are what we should be voting on. Black hole in the Budget? It's not so big and it's manageable - Governments don't have to make profits, they are not private enterprise - they are supposed to provide for their people. Our taxes - our needs. Thank you.

Catherine said...

I agree, Bern -there is so much that is wrong with our current system... the idea that there is a magic number, and everyone under the line gets help but anyone who scrapes over misses out all together, or the fact that to get help under the "autism spectrum disorder" category in Victoria you are measured by tests that don't actually focus on the key features of ASD (my daughter has ASD too)... I agree, we need to speak up, and demand a different approach that supports all children.

Krich said...

I wish you and your son all the best. I know how hard it is. My son has adhd an oppositional defiant disorder. He has managed to learn very little in school and is falling further behind. The school have made it clear that this is our problem and not theirs.we do our best but he is there 5 days a week and not learning. Too frustrated for words.

Just wanted to add - I am a great admirer of your writing and humor. I relly hope you stick with it because you rock!

Ann ODyne said...

Hello B this is my first visit here.

I do hope you are able to enjoy The Big Bang Theory and the mother of Dr Sheldon Cooper battling his genius with her Bible. There are some lovely scenes - from your post above that I just read, her character is the same as your mother.