‘It’s impossible to truly understand the depths of despair that confronts a parent of a child with special needs.’

Content warning: This article discusses suicide. 

In June this year, my husband and I had a rational discussion about ending our lives and the lives of our three young children.

Don’t judge me. Don’t assume anything. Let me take you, as best I can, to a very dark place.

Hours earlier, doctors sat us down in a small boardroom at the children’s hospital during what we believed would be a routine visit. A team of doctors — together with a geneticist and psychologist — warned us that our three-year-old son, who had been in and out of hospital since birth with various health complications, likely had a severe genetic metabolic disease which would see him live to a maximum age of 10.

His muscles and bones would slowly waste away. He would stop growing once he’d reached full height (approximately one metre), and would then be wheelchair bound. Our bright boy would gradually fall into the grips of full mental retardation. He would die a very horrible and painful death, most likely due to cervical spine instability and spinal cord compression.

The medical staff asked our permission to conduct genetic testing on our two other children — a five-year-old and a brand new baby. We were told at the time they both had a fifty percent chance of carrying the faulty gene.

In a single moment, we were faced with the possibility that our three beautiful children — who we had fought so hard to make, following years of IVF — were slowly dying. And it was our genes that were killing them. We were responsible.

We battled through two arduous months of genetic testing. The results came back negative for our eldest and our baby. But the testing on our three-year-old was inconclusive and he remains undiagnosed to this day. We are still riding the rare disease roller-coaster, with full genome mapping currently underway. But while we wait for answers, he is receiving treatment and care, and his outlook is promising.

My husband and I bounced back. Life went on. We never spoke of that conversation again. Until this week. Following the events in Davidson, on Sydney’s northern beaches.

Maria Claudia Lutz and children. Image: Facebook.

It is easy to judge. It is easy to blame. But I challenge anyone faced with the prospect of watching their children die a painful death not to go where we went. Even just for a fleeting moment.

We are a normal family. We are educated, professional, contributing Australians. Neither of us has any history of mental instability. Yet we went there.

It should be noted that the Davidson family faced very different circumstances than we do. It's widely reported that the two children involved had autism. Autism is not a terminal illness like that which our family has had to grapple with. But parents of children with autism face similar barriers to services and support that family of other special needs children.

It's impossible to truly understand the depths of despair that confronts a parent of a child with special needs. When you have a sick or disabled child, so much of their care plan is centred around primary health outcomes. But perhaps it's time that we -- the community, the support services sector, and all spheres of government -- put the mental health of parents front and centre.

That also means addressing other gaps within the current support networks for carers, and the pressing need for additional support and easier access to services. For many special needs children, government assistance is sparse and ends too soon. In the case of those with an Autism Spectrum Disorder, for example, many families don't receive a formal a diagnosis until their child is six. They then run the very real risk of missing early intervention funding altogether. In other cases, the availability of government and non-government assistance goes nowhere near far enough to cover the variety of expensive therapies the child requires, such as occupational therapy, physio, speech therapy. For many already vulnerable families, the out of pocket medical costs can be crippling.

In the wake of the terrible events at Davidson this week, much has been said and written about the overwhelming sense of grief for a beautiful young family lost. And rightly so. There has also been wider debate about whether a close-knit community failed to protect its own. Discussion is important but the blame game must stop.

I in no way seek to speculate or exploit what has happened here. But while so much about this case remains unknown, the extenuating factors cannot be ignored. We must recognise the significant stress on parents of special needs children if we are we prevent further tragedies of this nature and magnitude. Until adequate mental support services are in place for parents, everyday mums and dads will continue to suffer alone ... in many cases, faced with the looming inevitability that their children are a day closer to death.

If you or anyone you know is suffering, don't suffer in silence, you can reach Lifeline on 13 11 14 any time. 

The author of this post is known to Mamamia, but has chosen to remain anonymous.

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