Joan’s son Jack is 12 and has a severe form of epilepsy that affects his intellectual capabilities and behaviour. He needs one-on-one care 24 hours a day. Joan also has a daughter, Ruby, and the family lives in Belmont, Victoria.
‘Jack has a form of epilepsy known as Lennox-Gastaut. His development was normal until he was about three years old and the uncontrolled seizures began. The severe seizures have affected Jack’s intellectual capabilities and his behaviour. His condition is expected to get worse with age.
‘Basically, Jack needs one-on-one care all the time. He needs help with dressing, feeding and toileting, and you need to watch him all the time in case he takes off. You always have to be aware of what he’s doing, whether it’s making sure he’s watching videos or making sure he doesn’t become too aggressive with his sister, Ruby. You really have to get everything done at home – like getting dinner ready – before Jack gets home so you can care for him. Because of this, going out gets to be too difficult. Sometimes you’ll give something a go but when an outing turns into a disaster, it’s easy to give up. You tend to base your life around home and not have much of a social life.
‘As a result we have to do everything separately. I might take Ruby out while my partner, Paul, takes Jack out. Without family support you rely on paid carers to get respite. The support we can access isn’t flexible and is allocated on a case-by-case basis. This makes working particularly difficult – I can get funding for a carer to pick Jack up after school and bring him home if I’m sitting at home, but not when I’m at work because it isn’t classified as respite.
‘What’s particularly frustrating is hearing about how society is so accepting of disability, and how disability is catered for in the community. It’s total crap. Most parents I know with children with disabilities have a really hard time taking them out. As a parent you’re given a really hard time when your child looks normal but doesn’t act the way they should be acting. You can feel really defeated.
‘You also lose your close relationships, and tend to mix with other parents of children with disabilities because you can relate. They become your support network. You don’t want to listen to people with pretty easy lives complain about what you see as trivial bullsh*t.
‘At the end of the day, though, the rewards do outweigh the hard stuff. As a parent you get a lot of love back and Jack does have a particularly good sense of humour. As a family we have a really tight bond – everything is out in the open and we all know each other really well.’
At a glance
- In 2009, 3.4% of Australian children aged 0-4, and 8.8% of children aged 5-14, were living with disability, including chronic illness, intellectual or physical disability. The percentage is higher in Indigenous communities.
- The total number of Australian children with disability has decreased from 319 000 in 2003 to 288,400 in 2009.
- 64% of the disabilities referred to movement, self-care, schooling or communication (known as core activity restrictions).
- Most parents adapt successfully to parenting a child with disability, seeing their child as a positive contributor to the family and as a source of happiness.
Grief is one of the most common reactions parents have when they find out their child has disability. Before having a child with disability, parents might have had dreams about how their child might be or how they imagined they’d be as a parent. Shock, anger, sadness, fear and resentment are only a few of the feelings that parents can have when they learn that a child has disability or illness. They might also wonder ‘Why me?’ or ‘What have I done to deserve this?’
These feelings all lessen with time.
Coping with the additional amount of physical and emotional care is a challenge. Children with disability can need regular medical attention, time in hospital or regular therapy, in addition to extra care at home.
Depending on the severity of the disability, your child might need constant supervision. This pressure and the sense of isolation that can accompany high levels of care can place a lot of emotional stress on parents, and might affect the parental relationship or the family’s ability to cope financially. Because of these stresses, emotional disturbances such as anxiety or depression are more common than usual among parents of children with disability.
While stress affects all parents, single parents who have a child with disability can quickly develop a good sense of the resources available, perhaps because they lack the informal supports that couples have.
Families of a child with disability cope better when they’re supported by their partner, other family members or community services. Having two parents to contribute to care, finances and emotional support can make parenting easier. Parents who have a positive attitude and who look at the advantages they have over other parents also tend to cope in a more healthy way.
Although some parents might have mixed feelings about accessing services through the community, respite care and other services – when available – can offer a good opportunity for parents to take a break and get assistance.
Parents of children with disability often worry that their other children are disadvantaged. In fact, studies have shown that having a sibling with disability can encourage growth and maturity.
If you feel as though you can’t cope, it can help to speak to a professional, such as a psychologist or counsellor who will understand the stresses associated with your role.
For further help, you might like to contact the Association for Children with a Disability
, a Victoria-based organisation that offers information, support and advocacy for children with disability and their families (freecall 1800 654 013