Monday, June 6, 2011

Sometimes, I forget how unusual we are…

Over the last six months, I have had the perverse pleasure of raking through our family life and presenting it as though it is a story, to complete strangers. It’s a decidedly odd thing to do, to be honest. Mostly, it’s odd because it makes me realise how we have redefined words like ‘usual’, ‘normal’, ‘standard’ and ‘understandable’.

Billy is autistic (just in case you are reading my blog for the first time). His diagnosis is Autistic Disorder. He has a lot of language (though if you listen closely, a lot of it is the same thing repeated joyfully again and again, and is sourced from various corners of the cable TV universe). He is a lover, a thinker and a genuinely amenable human being.

He is most content in the company of those he knows. He is capable of learning just about anything from what we can tell, but practically nothing will be learned in that natural osmotic mode of learning that many kids experience. He has gigantic compromises in the areas of immune health, sensory processing and tolerance of babies (his nemesis).

He is an only child by choice – his choice fed heavily into our choices. He loves animals with a passion that can be quantified both emotionally and intellectually. He is bright, without a doubt, and he has the natural attention span of a hummingbird with ADHD. He is especially distracted by leaves blowing in the wind, which is surprisingly hard to avoid without carrying around a portable tent for use when concentration is required.

I know I am lucky to be able to say, he is a genuine joy to live with. While the homeschooling part of my Mummy persona often threatens to abduct every single one of his toys (out of pure frustration), my remaining Mummy bits are completely charmed by his company. Poo hell, not withstanding, our lives are pretty damned good.

Except it sure doesn’t look like that when you have to explain it to the non-ASDians among us.

'You feed him the same dinner every night? Why would you do that?'

'You don’t go places where there are babies? Are you kidding me? You can't avoid babies!'

'You allow him to ride the volume control on your TV? What if a really good bit comes on?'

When people say these things to me, I usually suck in a huge breath and begin a long conversation about why. I’m thinking ‘Hey, 1 in 58 boys with a diagnosis, this person needs to know this stuff.’ And then usually, I see their eyes glaze over, and they get that I’d-rather-be-talking-about-colonoscopies look to them. And I stop.

I stop because I think my mother once told me that boring people to tears is not a positive life skill. And I kick myself into asking about football or what Jennifer Aniston is doing (both of which I have a passing interest in, for sure). I also stop because I realise that there’s a certain type of person who will never understand the neurological/physical/cognitively different road less travelled.

It’s like trying to get me to understand what would get you out of bed pre-dawn to strap yourself into a kayak. By choice. It just doesn’t compute. I have ultimate respect for anyone who can put themselves through that kind of physical horror, and not end up with an Olympic medal of some colour. But it does not compute.

Just as it clearly does not compute for some folk, that we would put our child first.

It’s logical to us, but others have a massive problem with the fact that Billy’s needs factored just as highly as ours in our decision about having more kids. It’s natural to us, but unbelievably affronting to others that we would put Billy’s health and well-being ahead of anything else. It’s all in a day’s work to us, but very strange to others that we sometimes eat in separate rooms to avoid mealtime dramas.

In the murky, quirky nether regions between recommended therapeutic approaches and what-works-for-your-family, there is the world of ASDian families.

We try. We choke. We invent. We fail. We innovate. We re-innovate because our previous innovation ended in the dog being brought down like a gazelle and taking a cautionary swipe with a giant set of claws.

It’s been interesting, in the broadest sense of the word, to have to open our family life to the scrutiny of those who neither live it alongside us, or have any kind of emotional attachment to it.

I’ve been forced to list activities, breakdown decisions, share emails, justify doctor’s appointments and chronicle therapy choices, all to people who understand autism about as well as I understand why Brad Pitt chose Angelina over Jennifer.

The last six months have truly been the definition of the examined life. And it really has made me wonder.

I wonder if people realise the privilege life is. I wonder how the self-righteous prop up their precarious perches. I wonder if their lives would stand up to similar scrutiny.

The pleasing thing about the scrutiny, is that I know, for sure, that despite the tsunami-like curve ball that life has thrown us, we have made a lot of damn good decisions. I know this because I am now frighteningly au fait with every possible piece of legislation that relates to disability, education and child protection in this country. I also know it because my deeply vulnerable child is alive and happy.

I feel like I've gained a PhD in life. An odd PhD in odd life. A PhD in putting fear to rest.

I’ve said it before, but I’ll say it again. I would not wake up screaming for it in the night, but special needs parenting ain’t all bad. It’s introduced me to lovely people, it’s awoken a fearsome capacity for research and it has distracted me from the spectacular flatline that is Jennifer Aniston’s film career.

Speaking of which… Am I the only one who thought her child in The Switch was probably an aspie?


Valerie's increasingly random ravings can be found at Jump on the Rollercoaster. She is the author of The Autism Experience - a collection of international perspectives on autism parenting. 



  1. Valerie, I really like how you are so 'out there'. Your posts always lighten my day - I know it is not easy having a child on the spectrum, however, the way you tell your stories and the love that shines through for Billy is incredibly motivating, non judgemental and really really special. At the risk of sounding gooey... thanks for sharing!! :)
    Di and Nick x

  2. Hi. I haven't read your blog before but after this post I certainly will. I really enjoyed your writing. Kudos to you for doing what is best for your family. My 2 favourite parts of your post were ... " I wonder how the self-righteous prop up their precarious perches. I wonder if their lives would stand up to similar scrutiny" ... and ... "I would not wake up screaming for it in the night, but special needs parenting ain’t all bad." Thanks for sharing.

  3. So much to love about this post.
    "It’s like trying to get me to understand what would get you out of bed pre-dawn to strap yourself into a kayak," had me laughing.
    "I wonder if their lives would stand up to similar scrutiny," had me nodding along, shaking my fist.

  4. Love you V :)
    I totally know why Brad chose Angie over Jen .... she's like waaay hotter and like... you know.....a tomb raider...I mean duhhhh! lol.
    I wish my life consisted of these life changing conversations, don"t you? lol