A column for a friend with a very special kid
On Tuesday morning I was getting a coffee near my Adelaide office when something really awful happened.
A little boy aged about four or five wandered up to me on his own as I was waiting at the intersection. He was walking around as if in dreamland. He stepped onto the road into the path of a taxi. A woman standing next to me screamed and I stuck out my arm and grabbed him. His parents were nowhere to be seen.
The two of us stood with him, asking where Mum and Dad were. He couldn’t talk very clearly, and was sort of mumbling to himself.
There was a hotel nearby and I thought he might have wandered out of the lobby. Out front there was a harried-looking couple loading suitcases into the boot of their car and clipping another child into a safety seat. I called out to them, asking if the boy was his, saying he had wandered onto the road. The mother let out a gasp. She grabbed her son by the arm and pulled him towards the car, tears starting to well in her eyes. She said quietly: “He’s got autism.”
If I had to describe the look on this mother’s face I’d describe it as a combination of exhaustion and defeat.
I couldn’t stop thinking about it for the rest of the day and emailed some mates telling them what had happened. One of them has a child with an intellectual disability. He wrote this in reply, which with his permission I have reproduced here, as it tells the stark reality of what these families face. He tells the story better than any journalist could, so this column belongs to him and his family. With any luck it will be read by our more small-minded politicians, people such as Queensland Premier Campbell Newman, who would rather play games than fall in behind the National Disability Insurance Scheme.
“What you experienced as shocking - and it is shocking - was just another day for those parents, and the parents of tens of thousands of other kids with autism or any intellectual disability in Australia. A mother’s tears that you witnessed are so often a daily release valve to get through the stress of just another normal day - where packing a car can become a life-threatening experience for a child. The whole family is under constant pressure, with the siblings often the forgotten victims of the stress. Divorce rates are upwards of 70 per cent, and you can see why. You can imagine them saying: ‘Why weren’t you watching him? I thought you were on duty? I assure you, that would have been the argument, or the reason for the deathly silence, as soon as they got in the car.
“What you experienced is a perfect snapshot of why the NDIS is so important to parents with intellectually disabled children. Most people couldn’t comprehend the financial pressures these families face. Special vehicles, wheelchairs, safety equipment, medicines, therapists. It all costs a fortune and much of it isn’t covered by any sort of insurance. As a society, we KNOW - from a statistical/actuarial perspective - roughly the numbers of children who will be born with an intellectual disability or will acquire a brain injury during their lives. We can insure for this, just as we insure for car accidents and other life-changing events that we know will occur at a certain statistical frequency. That’s why the NDIS is so important and why some of the hardcore economic rationalists who question its cost just don’t get why it’s so important. The cost of not having it is what can’t be justified.
“I can guarantee that when the parents of that little boy get into bed each night, the last thing they talk about is how he went at school today, what the speech therapist said, how he seemed a bit aggressive or sleepy. They’ll wonder if the medicine doses are right, they’ll talk about the babysitter coming to look after him for a few hours this weekend so they can take his big sister off to netball together, they’ll plan what has to happen tomorrow with the visit to his psychiatrist, and they’ll fall asleep exhausted thinking about him.
“And always, lurking in the back of their minds not far from their thoughts, is the fear of what happens when they’re gone. Who is going to look after him? Will he improve enough to be able to have the semblance of an independent life; will he be able to live in a group house with some supervision? Will he ever get a job at the local supermarket or washing dishes in a restaurant, something they’d view as an absolute victory? Will they have enough money in their will - Hell, how do they write a will that accounts for all the unknowns? – to ensure he’s looked after when they die?”
My mate wrote at some length in the email about his child’s situation. He describes his child’s needs as “relatively basic - no special equipment, just a tricky set of brain issues that are constantly at play”. He works extremely hard and is financially comfortable, and he has to be, as he spends $50,000 a year on childcare. This covers the cost of an experienced nanny who takes their child to a specialist school in the city while his wife takes their other child to a regular school, a babysitter every night because his wife can’t cook dinner or get anything else done if someone isn’t watching their child with special needs, and another babysitter on Saturday mornings so they can do something with their other child. He says most other families are in a worse situation.
“The vast majority of these families struggle financially because often only one parent can work and, as I mentioned, the costs of life are simply but staggeringly higher. That means many of them never get a break from the pressure. It wears them down until it defines them. I see it all the time and it’s so very sad. Anyway, I’ve written more about this than I had intended. If you ever write about the NDIS mate remember that the little boy you saw today will hopefully go on to live a full, fun life, and a life in which the statistically predictable costs of his care can be shared across the community rather than being entirely borne by his stressed-out and struggling parents and siblings. It won’t solve their children’s problems, but it might make that last few minutes before they fall asleep each night just that little bit easier.”
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