I apologise for the inactivity on the blog front of late. Full time work has been keeping me busy, as has turning 50 on the weekend.
Reaching a half century naturally gives rise to thoughts about what has been achieved so far and what remains to be done. There’s nothing focuses the mind as much as realising that you have already lived the greater part of your life. It leads you to think about the impact you can have in your remaining years, what you most want to do with them, and what good you can accomplish.
I always said when my kids were grown up I would try to help others who were bringing up children with disabilities. I’ve tried to do this by writing about my experiences. But I have never yet written about the Worst Years. It’s time I did.
I haven’t written about them yet partly because this blog is meant to be humorous. But mainly because I lacked the courage. I was ashamed to write about what happened to me.
Last month I went to a breakfast fundraiser supporting women affected by domestic violence. I met a woman who had grown children, a thriving career, who sat on several boards and who seemed to me the epitome of the successful professional woman. She confided that she had been the victim of domestic violence at the hands of her husband of thirty years. He had on one occasion broken her arm.
She shared that she had never told anyone about this as she was ashamed. Ashamed that she, a competent, educated, capable woman would ever allow anyone to humiliate her in this way. What sort of message would it send if she told the wider world? How could she hold her head up?
In most cases, domestic violence is inflicted upon women by their partners. Very occasionally, men suffer at the hands of women. And then there is the violence children inflict upon their parents (usually the mother). This is a real phenomenon. The Australian newspaper last year reported that 2013 cases of abuse by children aged 10 – 17 years had been reported to police in the 5 years from 2009- 2014. Substance abuse, mental illness, alcohol all played a part. So did disability.
Family violence is a complex issue. Children learn from what they see at home. We know for a fact that children who witness domestic violence at home are far more likely to become perpetrators themselves. Happy Chin had a flatmate who used to lash out at him regularly and who came from a troubled family background where physical violence was a regular occurrence. Who could blame him? He was severely autistic, confused and also a really sweet young man to boot.
We had to remove Happy Chin from the situation of course, and we did.
But what of the parent whose child is the abuser? Women whose partners are abusive can leave. It is often very difficult to leave, especially where there are children to support and bills to pay. There may still be love in the relationship, almost certainly there is fear, and control. I do not for a moment suggest that escaping domestic violence is easy. But in my case, I could not leave my child. In fact, society dictated that I should love him, even as he was blacking my eyes and pulling out handfuls of my hair.
Right now, all across Australia, mothers are cowering in their kitchens as their disabled children throw punches, bite, kick and scratch. Fathers, too, are regularly subjected to biting and clawing as they try to engage in the simplest of daily routines like getting their child dressed for the day. Carers know this. Any disability worker knows this and will happily trade war stories and scars with me. Who knew that an 18 year old girl with cerebral palsy could crawl out of her wheelchair onto the floor and lie in wait to bite her mother as she walked through the living room door? This happened regularly to a woman I know.
Another family I know have a 6 year old who one weekend cost them $6,000. She threw all of the television sets in the house to the floor because the sequence of the various DVD’s she was watching on each set failed to synchronise exactly as she required. She is 6! Imagine what could happen when she is fully grown.
For around 3 years we lived in a complete state of siege. Life had always been challenging with our eldest boy, but when he hit 15 matters escalated sharply. He would put his fist through windows. He’d scratch and bite our arms regularly (I have multiple scars that will never heal). For 3 years, no one could sit at the dining table with their back to the door as he would refuse to come and eat and throw objects into the centre of the dinner table, smashing plates and glasses everywhere. If he did consent to eat he would, without any warning at all, suddenly fling his bowl or plate to the ground or across the room. We dined off plastic plates for 3 years.
One day, he went on an absolute rampage, again with no warning, hurling mugs and glasses around the kitchen. I grabbed the 2 younger boys and fled to the shed where we locked ourselves in. 20 minutes later I nervously returned to the house to find complete carnage, shattered glass everywhere and Happy Chin bleeding from his hand where he had punched yet another window. He would not allow me to treat it, so I spent the rest of the afternoon sweeping up broken glass and wiping spots of blood off the floor where he had dripped it. I think I cried for about 3 hours. The younger children were told to return to their rooms and lock their doors.
Our younger boys lived in a state of lock down for 3 years. We received 3 nights a fortnight of respite. The boys became very withdrawn and the Lamington, with his mild autism, struggled a great deal socially and mentally. One day I found Tech Support lying in the foetal position under his desk sobbing his heart out. He would not tell me what was wrong (afterwards he told me that growing up, he hadn’t wanted to add to our anxiety, so kept his own struggles to himself).
Happy Chin was always sorry afterwards, but I grew to hate my own son. More than once I struck him. “I hate you!” I would shout, with my hands wrapped round his throat. I fantasised about placing a pillow over his head and pushing. Luckily I was always able to restrain myself, or at least to walk away. Even walking away was sometimes impossible, as I couldn’t leave the younger children unprotected. I knew how dangerous it was for me to remain in a room with a child I was ready to harm, but what could I do? What must it be like for someone without any support, a single parent living in an isolated place? Or someone struggling with mental illness themselves?
The violence in our family just grew. A violent response to violence is a hopeless way to proceed. We knew it. You can’t hope to teach a child not to hit if you are hitting the child. But we were pushed way beyond our limits so often. Happy Chin slept only a few hours a night. We took it in turns to sleep on the couch to ensure he didn’t wander into his brothers’ rooms and wake them as he wandered around the house. He frequently would not sleep at all. We were both holding down daytime jobs (just), struggling to bring income into the house, all the while paying for constant breakages. Desperate, we sought a group home for Happy Chin. We were at the top of a priority waiting list for 18 months. One worker told me privately that if we were truly at the end of our tether, our best bet was to ‘dump him’ in respite, simply drop him off and never come back.
We just couldn’t bring ourselves to do it. We were so worried about our other boys, but we couldn’t abandon our child, however ambivalent our feelings towards him had become. We just soldiered on, I would wear long sleeves right through summer so no one could see the bleeding, use makeup to cover the bruises, smile and try to be brave. After all, what could I tell people? “My son blacked my eye. But you mustn’t condemn him, he has a disability and can’t help it.” I did eventually steel myself to confide in workmates, braving the appalled looks on their faces. I didn’t really want sympathy, I wanted to forget all about home and use work as my respite. However, when you’ve been crying all the way to work and walk in 10 minutes late with puffy eyes and bleeding hands, even the most unobservant person will eventually twig that something is going on. And I had to fess up in case they thought it was Mr August doing the damage! Mr August, being a gardener, could explain the scratched and bruised arms by lying that he’d been pruning rose bushes.
Post neurosurgery we discovered that much of Happy Chin’s unpredictable behaviour was due to the large tuber on his right frontal lobe. The difficult teen years between 15 and 18 only added to the turmoil in his brain. His teacher did tell me that ‘by the time he gets to 18 you won’t recognise him.’ And she was right, he became our gentle giant. Now at 21 he is sweet and funny, occasionally disruptive but mostly very loving. His brothers adore him. They have had a tough time, I wish their childhood had been easier, but I could only strive to protect them as best I could. I could not even protect myself, only take the brunt and attempt to spare them. I don’t think they blame us, but perhaps they do. They’re entitled, that’s all I can say.
As for me, I got through and our family mended. If there is even one woman out there who is suffering the way I did, reads this and takes some hope, then it is worth having written it down. I am not a hero. I wished my own child was dead. What kind of mother wishes that? I hated myself every day, cried a lot and somehow just kept going. Who could I talk to, after all? Who else could possibly understand?
It took another woman to make me realise that unless we have the courage to speak out, a sister somewhere will believe that she is utterly alone or worse, has brought this on herself. And I can’t, through my silence, be complicit in that any longer.