When Bek Salmon gave birth to her second child, nothing seemed out of the ordinary. She looked forward to making a doll’s house for her baby daughter and one day teaching her how to cook. But by the time Anouk was seven months old and failing to reach basic milestones, Salmon realised something was wrong. 

A visit to the GP was reassuring: some babies just take their time, she was told. “I kept expecting her to catch up but as time went on she didn’t make much progress at all and suddenly they were sending us to all sorts of specialists and having MRIs done and people were looking more and more serious,” Salmon says.

Anouk, now eight, was eventually diagnosed as having cerebral palsy and a global delay. She attends a support unit at school but can’t walk or talk and still wears nappies. “The hardest thing is saying goodbye to the expectations you have when you first have a baby. There was a big grieving process,” Salmon says.

Hopes that Anouk would eventually be able to master all the skills she would need to be a fully functioning adult have faded and Salmon now celebrates whatever progress she does make. “You learn to create new goals,” she says. Anouk has learned to crawl, loves moving to music and can communicate with a hand movement when she has had enough to eat. “When she does hit those milestones, it’s huge. And she knows, too. She’s standing up now and she smiles around the room as if to say, ‘Look what I can do!’”

UNEXPECTED JOY

Salmon says Anouk has forced not only her, but also her partner and two sons, aged 12 and one, to slow down and appreciate every blessing life has to offer. “She has taught us all patience and unconditional love and she has made me realise how incredible my eldest son is because he cares for her so well and has never had a moment of jealousy or anger towards her.” 

There are certainly days that threaten to overwhelm her, though – Anouk has gone through stages where she screams for most of the day for as long as a week. “You have moments where it does seem all too much … I get really angry at the world, not at her, but that I’m in this position and that she’s in pain and I don’t know how to help her.”

Support from her partner, family and friends helps when the going gets tough and, regardless of the challenges she comes with, Salmon says she loves Anouk more than she initially thought possible.

“Even though she is not the little girl that I expected her to be, she is sweet and happy and there are certain things you can do for her that make you feel like a million dollars, like when I play the cello. Anouk sits in front of me full of joy, smiling and clapping her heart out. When she gives you her attention she gives you a hundred per cent of herself.”

BREAKING POINT

Like Salmon, most carers adapt to looking after a child with a severe disability. But some parents, who are faced with a lifetime of caring for a disabled child without enough support, can be pushed to breaking point. Carer hardship was highlighted earlier this year when a NSW coronial inquest failed to determine if the parents of a two-year-old girl with Rett syndrome were responsible for her death.

Before she drowned, Maia Comas faced a future where she would be unable to walk or talk and would require full-time care. Her parents Pablo Comas and Samantha Razniak were pursuing foster care for her, had inquired about legal euthanasia and Razniak had reportedly spoken of jumping off a cliff with her daughter. “I don’t want to wait my whole life to see if Maia will go to the toilet by herself or wait 10 years to see if she’ll drink by herself,” she told the Department of Community Services. “I respect people that can do it. I just can’t do it.” Razniak, a swimming teacher, also told social workers: “I don’t want to see my daughter become a monster … I’d rather her die now than die slowly.”

Maia drowned in an inflatable backyard pool and Razniak told police she was too panicked to attempt resuscitation. The week-long inquest failed to determine if her death was accidental.

Other cases are more clear-cut. In the UK, Joanne Hill was convicted of drowning her four-year-old daughter Naomi in a bath because she was unable to cope with her disability. In New Zealand, a Nelson man was cleared of murder and manslaughter despite confessing to smothering his five-month-old brain-damaged daughter. “I just wanted her to be that perfect little baby that she was; I didn’t want her to have a life like that,” he said.

Australian mother Daniela Dawes also walked free after admitting she had killed her 10-year-old autistic son before attempting to take her own life. “I’d do anything to hold him again, anything,” Dawes said. Dawes had been fighting to get medical, educational and behavioural support and moved to Sydney in the vain hope they would be able to access better services.

LACK OF SUPPORT

Access to support services is critical for the wellbeing of carers but demand exceeds supply in Australia. According to Shut Out, an Australian government report assessing the experience of people with disabilities and their families, more than half of the submissions received during the consultation process said the disability service system was “broke and broken, chronically under-funded and under-resourced, crisis-driven, and struggling against a vast tide of unmet need”.

Past generations of disabled children were commonly cared for in institutions but for the past 30 years these children have been raised in family homes, so support services are crucial. Respite care can provide relief from the often relentless physical, emotional and financial stress of caring for a disabled child. Parents who can no longer care for their disabled children have resorted to leaving them in respite homes for months while they wait for permanent homes to become available. This exacerbates the shortage of respite care for other parents needing a break and waiting lists of two to four years are common.

The future may be brighter for parents and their disabled children with the news in August that the Federal Government has committed to introducing the National Disability Insurance Scheme following intense lobbying and the results of a Productivity Commission report. The scheme, estimated to cost $6 billion and due to be trialled in 2014 in one location (before being introduced nationally), will provide disability aids, lifelong personal care support and respite for families and carers regardless of whether a child was born with a disability or incurred it later.

WHEN DISABLED CHILDREN GROW UP

Peter Rix, author of Water Under Water (Random House, $30), a novel about a family’s journey with an intellectually disabled child, made use of respite care for his daughter, Jo, who was born with Down syndrome for two or three weekends each year from the time she was six. Although Rix, 63, and his wife got the break they needed, the guilt at leaving her there was profound. “Jo hated it … she quickly realised she was being put there because she wasn’t quite the same as her brother or sister and she resented that,” Rix says. “I hated going there myself, I hated it.”

Rix and his wife were among the first generation of parents to care for a disabled child in the family home rather than an institution and Jo is clearly well loved. Now aged 33, Jo lives in a self-contained studio on the ground floor of her parents’ house and they no longer need to rely on respite care for her. She gets herself up and off to work and enjoys regular social outings but she still requires help managing money, learning new transport routes, and assistance cooking, doing laundry and cleaning.

Rix hopes there will be supported living options for Jo by the time he and his wife pass away or are no longer able to support her. Accommodation options are virtually non-existent for disabled children who outlive their parents but a range of options are being explored, ranging from unit developments to assisted independent living.