2016

Light at the End of the Spectrum 


2016 is a Census year in Australia. Anyone following the news, even overseas, will have heard of the massive debacle that befell the Bureau of Statistics on August 9th. For the first time, the survey could be completed online, and when the entire population logged on, with the apparent help of some conveniently placed hackers, the servers collapsed and brought the whole operation to a screaming halt. 

This year, thanks to a combination of foresight and boredom, I completed our Census the day before. Needless to say, I was in a self-congratulatory mood on the 9th, having avoided the catastro-fuck engulfing the ABS website, but I was also a little stunned. 

This Census, I selected yes beside a question I had previously marked as no

This Census, I became a carer. 

My son is on track to be diagnosed with High Functioning Austism Spectrum Disorder, a developmental disorder where a person will have  difficulty with communication, social interaction and restricted and/or repetitive interests and behaviours. 

I’ve known since he was little that he was different. He had a difficult birth and a terrible time as a newborn. He was always behind on his growth and development, never put on much weight and had quirky little traits that triggered a little alarm in my head. For months now I have berated myself – I should have known. I did know. 

Whenever I mentioned these behaviours, my concern was dismissed. He was ‘normal’, just acting up, just doing it for attention, or just a ‘funny kid’. Then suddenly, at 3 years old, those funny, cute behaviours became inhibiting. Those quirky little traits became restrictive and rigid and what I’d known in my gut for years exploded with fluorescent, neon clarity. There was something wrong with my boy. 

His kindy, new to caring for him but very experienced, noticed the problems right away and directed us to professional help. His initial assessments, within the first session or two, were indicative of ASD and a creeping, hateful, knowing sensation edged up my spine from the dark place I’d hidden it in my gut. I knew what this was. I knew when he was tiny. I’d always known. 

The knowing feeling morphed quickly into anger, then apoplectic rage. I’d know what this was years ago and been led to believe something else. I’d known, by the sense parents have of their children, that this poor kid was struggling, and each time I’d expressed this knowledge, I was ignored, dismissed and placated. I was patted on the head by well meaning folk and told not to worry, when instead I should have been hunting for answers. 

I was furious. I hated everyone, everything. Every hippie moron who blames ASD on vaccinations, every fool who dared tell me ‘God only chooses the strongest mums to have disabled kids’. I wanted to knock their front teeth out with a bat and watch them bleed.

This had nothing to do with a non-existent, cloud dwelling, robe wearing deity. It was all about genetics and the stupid, stupid way that stupid nature takes its stupid course. My chromosomes, mixed with my husband’s, had caused this. It was all on us. All on me. 

Then the anger became desperate, shuddering sorrow. How was he going to manage at school? Would he be accepted into classes, or shunted around and rejected because of his lack of emotional control? Would he make friends? Would he be invited to birthday parties…? 

My heart was paired open with a rusty knife when I realised making friends, keeping friends, understanding social cues would be harder for him than it was for me. I was an awkward, anxious, almost-ASD child and I struggled. I’m still very much the same as an adult. What future awaited him? 

That almost broke me. That loneliness, that awful, crippling anxiety, that awkwardness, was not what I wanted for my son, nor was I willing to accept it. I would not. I could not. But what choice did I have? Was there light at the end of this Spectrum, or only a shadow of the life I imagined for my sweet child? 

For now, we are waiting and working, pushing on with efforts to help him and building networks with parents in similar positions. I have days when I don’t feel the weight of the disorder on us, and those days are magnificent. There are other days, sometimes weeks, when it falls so heavily that I’m sure it will crush us all. Those are the days when my claws come out and I drag the three of us through to the other side. We emerge filthy, exhausted, bloated from eating take out food and not getting enough sleep. We’re surrounded by piles of laundry and mess and Paw Patrol DVD covers, but we are alive. We are alive and we are together and we are safe. We are battered, but we survived. 

This is no short or easy road, nor is it a story with its ending written out. It’s been hard and it’s going to be hard, but if there are no ups and downs in life, it means you’re dead. It’s going to take passion and love and hope to see it through, as any parent knows. I know. I’ve always known. 

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