Relinquishing my son to state care
The Rogers family.
Boyde is the youngest of our four children and he has a disability. As with each of our children, we love him to bits.
All children take you on a journey, but Boyde has taken us on an unexpected one – where the highs are unforgettable but the troughs are so deep you’d never want to go there again.
Boyde has a rare genetic disorder which is undiagnosed. In a nutshell, he has a severe intellectual disability, with autistic behaviours and sensory processing difficulties. Because of this, he is non-verbal, has serious behavioural challenges and, at 13, is not toilet trained.
When Boyde was living at home with us, everything we did and every decision we made was centred on him. It had to be. Keeping Boyde happy meant the rest of us could breathe a sigh of relief. In a sense, our whole family’s mood became tightly intertwined with his.
Boyde’s distress was no picnic – the head banging (on us, the walls, the windows, etc.), the screaming, the kicking, the scratching and grabbing. And unlike a “normal” child’s tantrum, it could go on for over an hour. All of us had our share of bruises, scratches and the like – an awful thing to experience, both for him and for us. So avoiding them was paramount. (Thankfully, we have lots of strategies in place today that mean the tantrums are few, and when they do happen, they are relatively mild compared to what they once were. But that has taken years to achieve and there are still no guarantees.)
Inevitably, without adequate support, sufficient respite and behavioural interventions beyond normal parenting skills – our family began to fall apart. Our daughter avoided coming home. She said that she'd move out as soon as she hit 16. Boyde's other siblings also received less and less attention and time that they desperately needed.
Boyde’s situation also started putting increasing pressure on our marriage. The cumulative effects of the stress weighed heavily on us. I was distressed most of the time and my husband Geoff was slowly sinking into depression. We simply couldn't go on.
In the end, it came down to an impossible decision – we either had to give up Boyde or we would sink. We had heard of other families, where a parent or a sibling had committed suicide because of the stress of raising a severely disabled child, and families where the marriage had fallen apart because of it. We didn't want to slide that far off the edge. And so it was with the painful realisation that our family had finally reached breaking point that we decided to relinquish our son to the care of the state.
That was a traumatic experience as much for Boyde as for us. The sense of loss and grief was heartbreaking, and the feelings of guilt and failure as parents were enormous. No help is offered to you at that point. You have to pick yourself up and find it on your own. You have to fight – and I mean really fight – for your child, to get them into a care facility, at a time when you have no emotional energy or strength left.
As a society, we are often indifferent to people with a disability and the plight of their families. The disability sector of our community desperately needs support and funding, and most people have no idea what a huge difference it would make to the lives of many. My family is only one story. But each tale is different, because each disability and each family is unique.
We’re now moving forward and trying to help fight for the future of families with similar experiences. People with a disability need to have their basic human rights met just like the rest of us. We need to fully support a complete roll out of the National Disability Insurance Scheme – only then will Boyde's world and the worlds of other severely disabled children be a better place.
Boyde has changed our attitude to life. He’s taught us to relinquish judgment and to embrace everyone with an open mind. What are my aspirations for my son's life, and for the lives of my other children? The same thing that every child deserves – happiness. Nothing more, nothing less.
Pam Rogers and her family will appear on SBS’s Insight [www.sbs.com.au/insight] program tonight, at 8.30pm on SBS ONE.