When the only choice is the hardest one to make
At the time, watching my three year old son on life-support in Intensive Care, and being told he would probably die, I thought it was the hardest thing I would ever go through. Joel was left with a profound disability, after sustaining a brain injury when medical treatment for gastroenteritis went wrong.
But even after that, with 15 years as a single parent of three children and 30 years of experience as a Registered Nurse, the hardest was yet to come.
Handing over the care of my 18 year old son, Joel, to Disability Services Queensland (DSQ), after years of fighting for adequate support - that was the most painful thing I have ever had to do. There is nothing that compares to that experience and pain. The nightmares for the five years after relinquishing his care were only made worse by the lack of any level of understanding from DSQ.
At three and a half, Joel had been a very bright child, with a steely determination and cheery personality. Although much of his brightness is gone following the brain injury that almost took his life, thankfully his determination and quirky sense of humor have persisted.
That determination was vital in Joel’s survival, as he had to relearn to walk, talk and feed himself. The daily challenges that lay ahead of us as a family were unknown at the time, but it soon became clear that Joel had been left with a catastrophic injury and that life would never be the same again: our plans for the future shattered along with Joel’s short life.
Our plan to move from north Queensland to Toowoomba to be near my parents was more urgent now, with a child with high medical and support needs, so a few months later we moved.
The cracks in a strained relationship with my partner were now chasms, both of us struggling to cope – with an increasingly aggressive four year old with high needs, a two year old struggling in a world he no longer understood, and an eight year old grieving for the loss of her brother, her family and her world.
Joel’s increasing high needs were coupled with complex health problems. My partner and I no longer communicated, and the relationship soon disintegrated. Along with the daily challenges of coping with all three children, extreme financial pressure with almost no support from my ex-partner further added to our stressful existence.
But we soon discovered that we were a good team and all grew together into a pretty cohesive, though often dysfunctional, family. Susan did well at school, while Kris struggled, having never coped with massive disruption to his world at such a young age.
Despite her age, Susan quickly became my best helper and my ally, as we fought to survive financially and to get through each day. I attempted to work in a casual role to make ends meet and to allow us to be a family. But as the stresses of Joel’s care increased, the need for external help became evident.
While support staff in the home relieved the burden of the physical care, it also added to the stress, as many felt it was their position to have an opinion about how we should do things.
As each year went by, Joel became stronger, his health and behavioural needs more complex, and my own health became worse. Susan and Kris both struggled with a stream of staff.
I began studying Psychology at university to try to understand the best way to manage Joel, as educational experts had no idea, and given that Joel was one of the first people to survive such a catastrophic injury, even the medical profession had very little knowledge on which to draw.
Education became my escape.
As soon as Susan was old enough, the stress of Joel’s high needs, the impact of the support staff on our family, and my own increasing need for her support led her to move out of home. Kris struggled and found his own coping strategies – many of which were destructive. By the time Joel was 18, I had reached the point of collapse.
My decision to relinquish his care to DSQ was the hardest and most painful thing I have ever done. The fight over the years to get aide time in school for Joel and support staff to help at home has now been overtaken by the fight for continuing care for Joel, as he lives as a 24 year old young man in the community.
After six and a half years, many letters to the minister, endless assessments and reassessments to determine that Joel requires 24 hour care, the fight continues. As a family, we continue. DSQ currently do provide 24 hour care to Joel, but this is not recurrent.
Despite this level of support, I continue to be heavily involved with Joel’s care on a daily basis and provide high levels of emotional and financial support. Although we all bear the scars of our caring role, I think we are all better people because of our experience, but the overall cost is huge.
Susan and Kris still struggle to make sense of their disrupted childhood. I struggle each day to fight for ongoing support for Joel, while trying to find my place in the world. And Joel just keeps on being Joel. He is witty and funny and has a refreshingly honest outlook on life, and he just keeps hoping the Broncos will win.
We all just want to be able to live life like everyone else – but Joel needs help with everything he does. This will never change. As a family, we need to know that he will have that help.
Coralie Graham and her family will appear on SBS’s Insight program tonight at 8.30pm on SBS ONE.
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