Friday, May 27, 2011

Stories and journeys and lawyers. Oh My...

It's been much longer than I would like between posts, as Blogger needed me to clear my cookies. In true passive-aggressive internet style, it didn't actually tell me that. I had to spend the week ineptly googling until I worked it out.

No matter, I am here.

It's been a week of illness. Billy kindly shared his bug with me, and I have to take my hat off to the little man's coping skills because it's a stinker. It's one of those throat bugs that makes moving your head painful, and being the vomiters we are, it's been a little unpleasant. It's all coughs and sneezes now (Billy's coughs and sneezes, as other folk are not able to cough or sneeze around him without him retreating to his inner cave in tears.)

Along with the sickness, it's been a week where we've thought a lot about the parents that we are, and the parents that we want to be. I'm not able to include the back story to this examination, but I'm glad (in a perverse way) that it has happened.

And this is why.

I'm 43 this year. I am (if I'm lucky) somewhere between a half and two-thirds of the way through my life. I feel like, around now, It's timely to look back and make some observations about my 'story'.

Don't get scared, now. I'm not going to take you on a long meandering journey through my life. In summary, here are some of the dot points I carry around with me - migrant kid, Irish in Australia, always wanted to write, outsider in an amenable way, fortunate to have great friends, lucky to have found a really decent partner, ultimately privileged to be a mother.

I have a mind that burns, and a heart in constant conversation with the brain. I churn through emotions, and each one of them leaves a mark. I've made some intensely stupid decisions in my life, but overall, I'm fairly proud of what I've done and what I've become...

Before Billy, my life was focussed on little kids. All the work I have done has been about making the world a better place for little kids - through theatre, through television, through words in general. I'm really, really proud of that, even though it has often meant a lot of intense advocacy and tough discussion. I really don't think we live on a world that has genuine respect for the immediacy of childhood.

When Billy came into our lives, my world came full circle. I loved everything about parenting from the start. Not that it is all easy, but it is definitely meaningful, rewarding, important. It is, without a doubt, the ultimate gig to me.

The only thing that autism has done to my perception of parenting, is intensify everything. Most parents find it hard to watch their child struggle with everyday kid tasks. When your child struggles with 90% of everyday tasks... it's hard more of the time. Most parents are proud of their child's achievements. When the achievements need so much leg work before they come to the fore, you feel you've earned a little extra pride. It's also given me an opportunity to use the skills I had before I entered autism world, in a slightly more obvious way.

So, along with the kids TV, I've always done, I've been able to write the songThrough My Eyes and put together the book - The Autism Experience. And I'm very proud of being able to do something positive and practical towards promoting autism awareness.

Why am I banging on about all of this?

Because it's all about my story. And that makes me think about Billy's story.

In his short life, he has faced more challenges than I have in mine, for sure. Between his medical issues and the individual idiosyncrasies autism brings to him, Billy has a lot going on. You wouldn't know it to talk to him. He has the odd moment of sadness (I have a mental picture of him with his head in his hands this week, crying and saying, 'it sucks more than anything, Mummy!' as evidence), but mostly, he is a really happy kid.

It's a brilliant thing that his story so far, if he were to tell it, would be a happy one filled with love and trains and holidays and animals and wrestling with friends. A lot of that can be attributed to him and him alone - the true beauty of his temperament and depth of his passions. The remaining bits, I think, come from the sheer duck-like leg paddling we do as his parents, to keep his life on an even keel.

Unfortunately, the outside world doesn't always respect the value of this graceful on the surface, comic-ly energetic behind the scenes parental activity (remember, I'm not that coordinated). Like most autism parents, we get our fair share of 'just make him do it' and 'he doesn't need any of that'. When it comes from family or friends, you can handle it with a smile and a hastily assembled voodoo doll or two. When it comes from people in a position of authority - doctors, educators and the like, it's not so easy. In fact, it's downright dangerous.

We, as a family, have entered a new frontier, and it's not full of pretty grasslands and horses. It's full of lawyers and legislation and long, detailed letters. It's where we're learning to be aware of the consequences of every action, every word and every single choice we make. In true Little House on the Prairie fashion, there are a few cowboys, snakes and Nelly Olsen types as well.

Why are we here? I hate snakes.

We are here because of Billy's story.

Billy's story will show that his parents fought for his rights, along with their own. It may show that we won, it may show that we lost. That, we don't know yet. We do know it will show that in Billy's world, fighting for what you believe in, is the right thing to do.

He will be able to say, when he was a kid, his parents thought he was important enough for them to risk weathering a few crappy storms. It will also show that his parents believe that the system should never come before the rights of a vulnerable individual, and that there are laws to back up our feelings - locally, federally and internationally. It will show him that if he chooses to do the same in his life, his parents will be totally behind him.

We may not do this right, but we will do our best. We will do it with honesty, integrity and the odd stiff drink.

It's not about the destination, it's about the journey and the reasons why we take journeys at all.

I would quite like to return to the days when journeys were about hotels and pina coladas. Maybe I should write that into my story...


Mama Deb said...'s interesting when you look at life's events from the things-happen-as-they're-supposed-to-happen perspective. I suppose we mothers of children with special needs are actually given a higher understanding of why some turn to religion and some to addictions. And then there are those of us who turn to each other...and I suppose some of us fall into all three categories!

Anonymous said...

Thank you for your this bolg, gave me a tear or two, cause its true its a strugle and a fight sometimes , but its belended with the beauty of the people that they r and joy they creating in holding their hand in this journey, and the knowledge that we havfe that they r worth any fight that is placed before us !!

Alicia Stoeger

Di said...

I really enjoyed reading your story, it certainly is an interesting one! Hotels and pina coladas are a very nice treat but think how boring it could get without autism in your life!! :)
I have visions of a voodoodi and it is making me chuckle!

imawestie said...
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Anonymous said...

:) love reading about your story and Billy's you fight a good fight V and you don't just fight for you but for all the parents of special needs children and I thank you for doing so :) CaRRiE