Tuesday, September 6, 2011

Sailing the good ship autism...

This weekend I left Billy for the second night in his lifetime.

It was odd.

For me. He was fine. The homefront was stable with Daddy and the dog and the same dinner he always has, and he was just fine. I feel great about this (a little irrationally miffed, but I’ll get over it) because it opens up a whole new world for me.

And that raises a question. Who am I as a person now?

As I stood in a theatre foyer (more about why in a sec) clutching a glass of champagne (ugh… but it’s alcohol) I was utterly discombobulated.

I didn’t have anyone to check on. I didn’t have anyone to worry about. I wasn’t fishing in my handbag for trains or snacks (hell, I didn’t even have a handbag). I wasn’t thinking about how long we could push it before I’d have to force anyone to go to the toilet lest the lack of replacement underpants in the already lacking handbag became a glaring issue to all around me.

I was released from parenting duty, and almost released from special needs parenting duty… it was equal parts thrilling and depressing.

Thrilling, for the late night room service I was planning on ordering from the hotel and eating in the empty fluffy bed with a TV not playing animal documentaries or Phineas and Ferb.

Depressing, because it really brought home how much my life has become about avoiding disaster. Without a looming Titanic style collision between autism and the world, I was really unsure what to do with myself. People coughed (Billy’s biggest threat) and I braced for the tears. People screamed happy greetings to each other and I had my hands ready to cover a pair of little ears. The theatre itself was big and echo-y and cold, and I was on edge despite the fact that none of those things actually bother me.

Clearly, I need to alter my focus from the Titanic to yachting safely somewhere in the sunny South Pacific.

Now, the reason I was lurching about in unfamiliar waters was something quite special.

A couple of years ago, to mark the opening of the Asia Pacific Autism Conference here in Sydney, I wrote a song called Through My Eyes. I should clarify that I wrote the lyrics, not the music, that was written by the lovely Fiona Johnson. My musical ability rates somewhere above my salsa dancing ability. And if you’ve met me in real life, you will keenly understand how far down in the bowels of hell you would have to be to witness a meeting between me and salsa dance.

The song was first recorded by the wonderful Thanh Bui, who sang it live at the conference with a choir of children from a groundbreaking school called St Lucy’s here in Sydney. Thanh has also recorded a Vietnamese language version for release in Vietnam in 2011. Next it was recorded in the UK, by Scott James, a truly extraordinary young man with Aspergers who braved the slings and arrows of X-Factor in the UK to bring the world to tears with the beauty of his voice.

On Saturday night, Through My Eyes was sung by a choir of children from the Hunter Autism School. They were accompanied by a beautiful singer called Amanda Streete, and the choir from Newcastle University.

From the moment I saw the kids’ stage places marked with smiling photos, I started blubbering. When they came on stage, and sang with their hearts and their hands and their beautiful spirits, I lost it completely. Some kids cried, some kids grimaced, some kids yelled at the top of their voices.

And I cried, and cried and cried. And I wasn’t alone.

It reminded me why I’ve become someone who feels like I’m coordinating the gradual defusing of an underwater minefield.

It’s because these kids are beyond precious. They are invaluable. They are impressive. They are immediate and honest and full of integrity. And, for what it’s worth, they are pretty awesome singers.

I know for sure, I am not the best mother I could be. I’m navigating my way through rough waters some days. But if one attempt at protecting Billy from the assaults of the world results in retaining his self-belief, then I know I’m doing the future a favour.

And as an added bonus, I am gathering quite the collection of cheesy seafaring metaphors.

Until next month, ‘Arrrrrrr, me hearties!’

(Sorry. I couldn’t resist)



Valerie’s increasingly random ravings can be found at Jump on the Rollercoaster.

If you want to read even more of her words, try The Autism Experience (a book with lots of other autism mothers’ words in it as well).


  1. You are a very uber cool mum.......... and I so want to see a video clip of those kids! :)
    p.s. How can you NOT like Champagne?!!

  2. you made me tear up Miss Valerie
    What a fantastic expereince and what a lovely role you played in that

  3. Valerie,
    What an amazing experience it sounds like you had. Thank you for sharing with all of us out in cyber world. I can only imagine how powerful that song must have been for you in that moment with the clash of emotions you were experiencing. You're an amazing woman. Keep up the great work!

  4. Congratulations on your song! How wonderful. And how wonderful for you to have a night of freedom from the daily responsibilities to celebrate it.