Monday, October 24, 2011

Hauling over the coals...

Next week, when we launch on our California driving adventure, I hope to be free of the millstone we have been carrying for the last 12 months.

This millstone started growing in size about 18 months ago, when we realised all was not well in Billy's world. It took a bunch of steroids in December last year, when our family was shoved from our  bumpy but rewarding road, to being on a dangerous, slippery slope.

Enter an express lesson in disability legislation, child protection legislation and the cost-benefit analysis that is a good strong legal team.

This week, the millstone will accompany us to the Australian Human Rights Commission, where it will (hopefully) be turned into dust.

In our journey as a family, we have made a transition between two worlds - from a world where philosophy principally drives action, to a world where necessity principally drives action.

Before Billy was diagnosed, my feet were firmly in the philosophy world. I believed in frameworks, and theories and scaffolds that drove my every decision. I had a rule for everything, and I surrounded myself with people who shared a similar vision. It worked well for me. I built a career being the 'Nanna', the fact checker, the danger police where kids, creativity and scripts were concerned. I believed what I knew, and I worked hard to keep on knowing more.

Then came autism. The thing that shook me out of my ideas about what kids 'should' be able to do, and into the world of what my child could/couldn't do. I couldn't recreate the 100 Acre Wood with my toddler, because he was sifting dirt between his fingers and struggling to poo. I couldn't let my child climb trees with abandon, because his gorgeous, dirty fingers didn't have the strength or dexterity to hold a toothpick, never mind his own weight.

I lifted my feet out of my fantastical pair of philosophical boots and placed them firmly on the ground.

I read, I asked, I cried, I tried. Together, as a family, we learned how to speak differently so our son could speak at all. We rebuilt our living space to extend our son's physical abilities. We opened our house to therapists and psychologists and early intervention workers and doctors and social workers and all the scrutiny they bring. We acquired a 'team' who are with us to this day, guiding us through each new gateway that life with autism builds in our path.

Every so often, I'd go back to the relics of my past, and lament the fact that the platitudes no longer applied to us. Who really cares about interactive drama experiences when your child can't tolerate a room full of kids, never mind the lights off and the contribution of a booming orchestra. 'He's behind you!' and 'I can't hear you' (the mainstays of kid's theatre) became cruel taunts, not invitations to participate.

I'd listen to radio interviews where people talked about parenting struggles and their dreams for their kids, and I'd think 'I wonder if I'll be trying to cajole my kid to play in the school band, cos right now, I'd settle for a valiant attempt at a three word sentence.'

I didn't lament the loss of my theoretical life, though, in fact quite the opposite. Like any parent, I'd been stripped bare by the refreshing reality of child-bearing and given the cold shower of mummy humility. It was no longer about me, it was about my son, my family and the journey we would all make into the future. Add the special needs aspect to our lives and the path looked more overgrown than before, but not impassable by any stretch of the imagination.

This life certainly beats the shit out of arguing for days about whether it was OK to waste food on kid's TV (though I did get quite good at that one... FWIW, the answer is always 'no'), especially because I was rapidly learning that food (the selection of, intolerance to, and subsequent rejection of) was going to be a central issue in our lives anyway. As would, speaking, writing, learning, independence, emotional stability, listening, walking etc etc etc.

Though our choices as parents will always reference the folk we once were, autism is a more powerful master. It dictates choices, it focusses decisions and it requires constant, dynamic attention.

Here's the thing.

I don't think autism is a burden for me, at all. I think it's a hell of a load for Billy to carry and he carries it with grace and the temperament of the Dalai Lama.

To be honest, I have to thank autism for lifting the theoretical veil off my life and forcing me to live in the here and the now. I'm also grateful for the people it has introduced me to, and the amazing capacity autism has for sending chills down the average human spine (good or bad, those chills remind you you're alive).

The burden, the actual palpable weight I carry is the weight of ignorance and intolerance. Each time someone says, 'He is good, for an autistic kid, isn't he?', add a rock. Each time a request for support is met with eyes that clearly have no intention to follow through, add a rock. Each child that is allowed to stare and laugh without an adult speaking compassionately to them about what Billy is doing, add a rock. Each time someone confects an opinion about us based on what they think they see (without checking the accuracy of those thoughts), add a big, fat boulder.

We all want the best for our kids, unless you have some vital part of your soul missing. After living the exposed and examined life we have lived (the same life anyone with a special needs child has lived), to have our motivations reported as questionable, is beyond offensive. More than that offence, it sets a dangerous precedent for other families of children with special needs.

We are fortunate that we can withstand scrutiny. We are not vulnerable. We have some financial capacity and a good grasp of the English language. We are fortunate we work in the media and so have a slightly heightened ability to source and decode information.

For the record, they call it 'special needs' for a reason. No matter how much we want him to, our son will not one day wake with the magical capacity to be like the 'other kids'. No matter how much belief we have in him (and trust me, the belief we have is not quantifiable), the autism will not disappear. He will gain skills and lose skills and heal some and regress some (as hard as that is to write). We will do nothing but the best we can, to make the road as pleasurable and possible for him as we can.

This is our reality. This is our life. We share it with our 'team' and with a legion of similar families. We do not want a medal, and we do not want judgement. We want questions. We want answers. We want respect for our difference as a family. We are an open book, because the choice to be anything else was taken away by three little letters - ASD.

I hope this week, when the dust settles, I hope that we see (once again) that disability laws exist for a reason, that due process is designed for fairness not for administrative neatness. I hope focus is placed on the idea that one should, as we have learned to, think before every single act.

If that is not possible, then the narrative we share with our son as he grows will be a really sobering one, and I don't think it's right to rest until it is altered. To send him forward into a world that says his unique needs come second to theory or philosophy, seems an abrogation of my job as his parent.

I still have my eye on my old fantastical boots, by the way. They are shiny, after all. They're in the shed with my high school report cards and my uni assignments... those things I valued before I stepped barefoot into the real world.

Maybe Billy can wear them one day when he makes his own 100 Acre Wood.

NB. I know this seems crazy to even say, but if you are feeling like commenting (which would be great), please respect that the matters I'm referring to in this post are legal in nature. I do not want to be in the business of defaming anyone or degrading anyone. It doesn't get us anywhere... and it's illegal.


Simon said...

Best of luck to you all, may the law be on the side of justice.

Anonymous said...

If someone has to take the fight as far as it needs to be taken, well there's probably a good reason he landed with you.

Good luck this week. We all have our fingers crossed that for once the law manages to find some justice.

Lisa said...

Thank you, for finding - no, making- the time to pursue this, on top of everything else that goes with keeping up with life.

On behalf of all those who may not have felt that they could.