As much as I love writing about wanks and manhood food, I couldn't let the recent World Autism Awareness Day pass without acknowledging it on my blog. Or avoid mentioning the fact that April is World Autism Awareness month.
Let's get the facts out of the way first.
On April 1, April Fool's Day, the timing of which was unfortunate, famous landmarks including Sydney's Opera House, the Empire State Building in New York, the Kingdom Tower Saudi Arabia, and Brisbane's Storey Bridge lit up blue to support World Autism Awareness Day
In Australia, there was a National Autism Summit, and a video will be released to be shown at schools and on television.
In any case, about 1 in 160 Aussie kids have an autism spectrum disorder (ASD). It is our nation’s most common developmental disorder, and more children are diagnosed with ASD than childhood AIDS, diabetes and cancer combined. No one knows the cause, and there is no cure.
It's no secret that Mr 10 has Autism.
Yes it sucks.
But, thank God, he does not have leukaemia, juvenile arthritis, or tumours, or anything else life-threatening and/or truly nasty.
He has two relatively healthy parents who love him, though we live separately.
But C. still faces challenges every single day because he is autistic.
The reality of his situation means that today, after a perfectly lovely morning at the movies, C. spent almost the whole way home repeating the word: 'knickers', in a variety of silly voices.
Years ago, I may have snapped at him and/or his sister ridiculed him, but we carried on chatting as if this was completely normal. Because we're so used to C's eccentricities, we often only vaguely notice them. (Which is sometimes judged as being weird when we have company).
At home, I did point out to C. that saying 'knickers' wasn't really a cool thing to do, and wouldn't win him any friends. He couldn't remember even saying the word!
Such is the reality of C's life with Aspergers.
(Repetition of words, noises or movements can comfort a child with ASD. In our case, it was negotiating our way home from the madness of the Myer Centre Car Park in the Brisbane CBD to home.)
How else does Aspergers affect daily life with C? Let's see. (And the following are just a few).
C. hates his school uniform, not because he is a rebel, but because it feels 'weird' on his skin and worsens his eczema.
And heaven help us if there are a pair of socks that match but that didn't come in the same packet together. Because C's toes will know the difference, and the socks will be taken off until I can find the exact same match.
He won't eat fresh bread, but he'll eat toasted sandwiches or wraps.
These are all sensory issues ... C. is over-sensitive to the way things feel, on his skin and in his mouth.
While some parents grieve upon diagnosis, I was kind of relieved.
So was Mr 10 for that matter.
'Oh, so that explains why I do things that other people think are bad,' he said on the way home from the paediatrician, following the official diagnosis.
And it was so true. Everything, too much to go into here, fell into place.
I'd known, probably since he was two or three, that there was something different about C.
I never viewed it as something to feel bad about, or an insult to my parenting skills, as some parents do, because I knew I was doing my darnedest! (Except for when some judgmental parents and teachers made me feel that way. And then I'd be hurt, and justifiably angry at their ignorance).
I just knew C. was different to other kids his own age. Not better, not worse, but different. Less understood, less liked by teachers and carers (except for a few wonderful ones, who celebrated his individuality), but different all the same.
I didn't want to 'fix' him'; I just wanted to help him enjoy his life. Basic stuff, like feeling confident and liked at school; Not being punished for doing things he seriously could not help, like fidgeting, having a distracting tic; or repeating certain sounds and words, particularly when stressed/over-stimulated. Which was often.
I wanted to stop him from being bullied or punished for being different. Which was often.
I wanted to end experiences, like not being taking seriously when he was hurt or injured at school, because he'd been prone to putting it on. Which was often.
On the worst occasion, a bone was broken two weeks into grade one and no one bothered to look at it correctly, or treat it, or even phone me to let me know. It took two weeks for staff to find out what had happened, even though it happened in class when he was under their care. Because no one, including his teachers and the sick room staff, really liked or valued C. That hurt.
(I have no medical experience, but it took me one glance to seek that at least one bone had been broken, and I probably would have happily stabbed someone if the need to get my son some medical care had not over-ridden the urge. That is how little the school staff cared for my son after knowing him only a couple of weeks. And yeah, it still hurts).
I tried to advocate for C. without success, and finally found a small, caring Catholic school for our child which, although we aren't Catholic, was better suited to C's needs - and ours!
Having a diagnosis, meant A. We weren't crazy, B. We weren't Bad Parents (though I knew that already, having done all the courses and also turning out a so-called 'perfect' sibling, H*), and C. There was a crapload of help we could now access for our son.
*It's true, other teachers/adults have said in front of both kids that H. is good and not at all like her brother, meaning, not naughty/badly behaved/ and/or unlikeable. And H. is wonderful, and good, and sweet, and a constant delight to me. But so is her brother! They are just different, okay?
Of course, early intervention, which is highly accessible in Australia now, was too late for C; but still, there were things we could do to help our son. Some of it has been trial and error, some has involved medical or hormonal intervention; others medication.
C's official diagnosis is Asperger's Syndrome, ADHD and Pervasive Development Disorder. He has some learning difficulties, but is highly intelligent and above his peers in others. He has an incredibly high vocabulary but has trouble spelling or writing the sentences and words he thinks. Which obviously gets frustrating. For him and for teaching staff.
C. suffers from anxiety, and at times has been diagnosed and treated for depression. (Yep, even before he was 10).
He has trouble making friends with children his own age, and he is 80 per cent less likely to marry or enjoy long-term relationships when he is older than the general population. Less likely to be a parent. But more likely to achieve something else amazing as an adult.
Life with C. is never boring. Or quiet.
But would I change him? If I could take the autism away, would I?
I don't think so. Because he is a super-cool kid, (as is his sister), and the quirks and the challenges just make him more interesting, and often, entertaining.
And as I tell my son, he may not 'fit in' now, but one day, the very things that make him different, will help him make a success of his life.
Without autism, we wouldn't have had ground-breakers like Albert Einsteen, Sir Isaac Newton, Michaelangelo, Mozart, Bill Gates, Temple Grandin, or LadyHawke. There are unconfirmed reports that high achievers like Jessica Watson, the late Michael Jackson, and Robin Williams all have Aspergers.
So I'm at peace with the diagnosis.
C. may not be asked to birthday parties or enjoy team sports, right now, but I'm sure that he will eventually find his niche and excel at it. And I've told him that, and he gets it now.
I do wish I could take away the barriers though. To others liking and understanding him. To those who think he's naughty and wild, without knowing how far he has come and how hard he tries. To learning well at school, and finding a tribe.
Even though we have a school where staff are immensely understanding, we face battles every week.
Why does C. insist on acting differently to the other kids? Why does he squirm in his seat or find it difficult to stay on task? Why can he not focus on certain topics, yet over-focus on others? Why does he sometimes come up with inappropriate statements at inappropriate times? Speak out at wrong times in class, or fall off his chair? When exactly will he be given a drug to help him focus and move around less in class?
These are all questions we are asked constantly and comments from teaching staff. (Erm, C. has Aspergers Syndrome. It comes with the territory.)
Recently, my heart was broken when we were asked not to allow C. to go on a class excursion to Currumbin Sanctuary on the Gold Coast.
He really, really wanted to go; and as for previous excursions, I was totally prepared to go along and help and keep him safe, look after his possessions, and keep him from being overwhelmed.
Instead, my help was declined.
It was suggested I take C. to Currumbin Sanctuary in my own time, when he would not be a distraction to the rest of the class, and an added stress on the teacher and helpers. At my own cost.
Even though the trip was part of the curriculum, included in our fees, and his class - including C. - was tested on it, the day that followed. (Not surprisingly, Mr 10 failed it).
There are so many shades of wrong with this, I can't even begin to get started here.
I get my son the help he needs - paediatrician, child psychologist, occupational therapy and anything else that is suggested. I fill out paperwork, required to ensure he gets the assistance at school he's allowed by the government.
I massage my son and teach him Mindfulness, to help him deal with stress. I've gone along with any medications that have been suggested to help, after years of trying everything else with limited success.
I try my hardest to help him with 'normal' challenges like homework, even though it cuts into quality family time. So much so, that I'm about to become a conscientious objector, given that I can't see any real benefit, and only negatives, like excess stress to all of us. His sister included, who doesn't always understand why C. needs quite so much of my time, and in her words, 'ruins' many things.
I advocate for him as much as possible, but my heart sinks whenever C. is not invited on playdates or to parties (even though I regularly host his friends at home or take them on outings).
It doesn't help that C. has life-threatening allergies, and most parents, understandably, are scared of having to use an epipen. Even though I volunteer to go along, Just In Case.
What I have loved, is watching C. blossom and accept and work with his condition, despite the challenges and his detractors.
When he was choosing school stuff this year, and opted for a hot pink and purple school bag, and matching lunch boxes and bottles, I gently suggested C, might get bullied for his choices.
"That's okay Mum," he said, piling the trolley high with his purchases. "If anyone doesn't like it, I'll just say they're my favourite colours, and if they don't like them, I don't care, because I do! That's their problem, not mine."
C. is fantastic with 'tech', which means anything to do with computers, phones or anything that needs to be put together.
I'm a single, dinosaur-like Mum, so depend on C. to frequently put together bookshelves and computer systems for me, or tune in the TV. Which he does so quickly and expertly, it astounds me.
He can recite passages from books he's read once or twice, word for word.
He desperately wants to go on Junior Masterchef, and can cook a perfect omelette for breakfast, together with a skinny cappucino, just the way I like it.
I have never asked him to do it, he has just wanted to do it. And do it well.
Though he fights with his sister, he'll also do lovely things for her; like read to her or give her a piggy back when she's tired. Or make her fluffy scrambie eggs on toast with a hot chocolate on the weekend.
He'll give ALL his pocket money to charity, and cry when he hears that friends and relatives are sick and/or injured. Or when people lose everything through natural disasters.
With C, I am lucky.
Some autistic kids find it hard to show affection, or be aware of the feelings of others. But I am blessed that there are times when C. craves my touch and affection.
"I need a hug," he'll say, drawing my arms around him. Or "I just need some Mummy time". And we'll spend some time just hanging at home with H. and the pets, and enjoying each others' company.
Even more interesting, for a kid who finds it hard to tune into social clues, C. can tell whenever I'm sad, or happy, or in need of a hug myself.
That's almost unheard of for autistic kids, so I feel very grateful.
So for Autism Awareness Week, all I want is for kids - and adults - like C. to be given a fair go. Don't limit them with what you think they should be capable of, and don't shun them because they are different.
Because just like all of us, they all have something to contribute.
And just quietly? Give their parents a break. Don't assume they are bad or lazy parents, because most of the time, they're trying just as hard as they can. Just as we all do.
My final wish is to do it forever, not just one day or one month. Because like a gorgeous puppy or kitten, Autism is for life.
Not just for a day, a week, or a month.
Buying a lemon.
7 hours ago