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Time to be aware…

I have three beautiful boys. All are dark haired, dark eyed and blessed with smiles that could give the Osmond Family a run for their money. They’re athletically inclined and all know the joy of participating in some form of regular sport. In short, they’re your typical Aussie boys who share a love of the outdoors and the company of their mates, as well as DNA. Similar in so many ways. All except for one – but you’d never know which by looking at them.

The youngest of my boys has autism spectrum disorder (ASD). H is 11 years old and was diagnosed at age 2 and a half.

He is part of the ever-increasing group of children (and adults) diagnosed with this condition every year. In the 1960’s it used to be 1 in every 2500. Current research says it’s now about 1 in every 160 in Australia. In the States it’s about 1 in 110. They’re staggering statistics, any way you look at them.

The Provider and I were devastated by our son’s autism confirmation. After that psychologist’s meeting, I remember sitting in the car feeling totally numb. Neither of us could fully comprehend what “Autism Spectrum Disorder” really meant, or what impact it would have on our family. The only thing that sprang to mind when I heard the word ‘autism’ was Dustin Hoffman’s character in ‘Rain Man’. That thought terrified the crap out of me.

Not much was said during the drive home. What could we say? We were both still shellshocked and grieving for what might have been. The imagined future of our boy had been ripped away by those three little words, leaving a gaping black hole that would be filled with who-the-fuck-knew-what? It was daunting and more than just a little bit scary.

The next couple of years were tough. Doing something as mundane as grocery shopping was fraught with issues. H couldn’t handle the noise or the size of the shopping centres. All that sensory stimulation would turn into overload very, very quickly. I usually had about 15 minutes before H would start to lose it. I had to be fast and efficient while the clock in my head ticked loudly the whole way. How busy would it be there? How quick could I grab what we needed? Would we get stuck behind a long line at the checkout? And would H become too overstimulated and stressed out by all the sounds and lights and movement?

Sometimes it was okay, sometimes not. Dealing with an autistic child having a full blown meltdown IN PUBLIC is one of the most stressful experiences ever for a parent. You literally want to just grab your kid and get the hell out of there. But you can’t. Instead, you mentally slap all those ignorant people who are openly staring, their gaze loudly transmitting their judgment of your parenting skills. The noise is almost as deafening as the high pitched crying ringing in your ears. He doesn’t realise any of this, of course. All he wants to do is leave this bright and noisy Hell and be back in the calm surrounds of home, where he can lie down on the floor and line up his cars in neat, regimented rows. 

But through the dark times, we had some lightness shine our way, too. In big neon globes, and bright! Like the day H’s amazing therapist Monique came to our house for one of his sessions and I heard real, actual WORDS come out of his mouth for the first time. Holy. Shit. He could talk! I cried my eyes out and hugged and thanked Monique repeatedly. And then cried all over again. H meantime looked very pleased with himself.

And that was just the beginning.

Fast forward eight years and H is in Year 6. We are at the beginning of the application process for high school, and a place in the special needs unit for Year 7. There is the usual bureaucratic process we have to follow and hoops we need to jump through but I’m used to that. H has come a long way since those frantic shopping excursions. We continue to be blown away by the things that he is able to do, for if nothing else, H is one very determined dude. In a ‘if you build it, he will come’ kind of way.

The gaping black hole that used to haunt my thoughts is gone. In its place is an optimism that H can and will do anything he sets his mind to. Because that’s what H has always done.

I think, deep down, I always knew that. At least I hoped I did. The only difference is now I can actually feel it.

April is the month for World Autism Awareness. Spread the word, people. x

8 responses to “Time to be aware…”

  1. Anonymous Avatar

    Brilliantly said!

  2. What Sarah Did Next Avatar

    Thanks, Anonymous. We've learned a lot along the way. Life is full of surprises!


  3. Groovy Grandma Avatar
    Groovy Grandma

    It has been an amazing journey for us all – and I know that we have all grown in understanding and pride, as H has matured. Life would be very plain and boring without his outlook on life, and the special joy that he brings to all who know him, is wonderful. He will go far in life – and we will continue to be amazed and proud of his achievements.

  4. sirbearofsydney Avatar

    Excellent. I am a mum of three boys too. I was daignosed with Aspergers last year, late in life, at age 40. Anyway, I just wanted to say I like your blog. Cheers.

  5. What Sarah Did Next: Avatar

    Aha! Another mother of three little men! There are plenty of us around.

    Thanks for taking the time to comment – I'm glad you're enjoying my blog. If you don't mind me asking, how has life changed for you since being diagnosed? Did you or your family suspect you had Aspergers? I often wonder how H will be when he is older, knowing there is a name for the way he is, and whether or not it will make a difference to how he feels about it.

  6. What Sarah Did Next: Avatar

    Likewise, I have no doubt in my mind that he will go far – anyone who has met H is usually of that same opinion too!

    He delights and amazes me every day xx

  7. Sirbearofsydney Avatar

    Hi Sarah, sorry I took so long to reply. You got me thinking – how has my life changed since diagnosis? I would love to say that I've strode off confidently into the sunset armed with knowledge and self-awareness and to some extent that is true. It has helped me understand myself better and why I struggle with some things ie. socialising, learning to drive, being organised. On the other hand it doesn't necessarily make the struggles magically go away. I try not to compare myself as much..still working on that. Your son has an early diagnosis (at least compared to mine) so that should help. I sometimes wonder if it would have helped me, but I guess I'll never know. Anyway, sorry to ramble and I probably didn't help much after all that lol

  8. What Sarah Did Next Avatar

    On the other hand it doesn't necessarily make the struggles magically go away.

    Yes, I imagine that's true but perhaps knowing why you feel like that helps a little?

    We were very lucky for an early diagnosis (I have to thank our local occasional care for noticing signs that started the 'search for a diagnosis' ball rolling there!) and were able to start early intervention therapy soon after. That definitely made a difference.

    I always appreciate any and all thoughts on the subject, Sirbear, so thanks a bunch!

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About Me

Hi, I’m Sarah!

Former wild-child of the 80’s, classic rock fan and loyal friend to a particularly awesome group of people. Forever planning to write more. Fervently wishes she lived at the beach. Loves the mighty All Blacks. Rather partial to a cheeky glass of red.

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