Raising a child with a disability

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• Profile
• At a glance
• The challenges
• For further help

Profile              

Joan’s son Jack is 12 and has a form of severe epilepsy that affects his intellectual capabilities and his 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, 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 that you can care for him. Because of this, going out becomes 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 Paul (my partner) takes Jack out.  Without family support you rely on paid carers to get respite.  The support we can access is not 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 am sitting at home, but not when I am at work because it is not classified as respite.

‘What is particularly frustrating is hearing about how society is so accepting of disability and disability is catered for in the community. It is total crap. Most parents I know with children with disabilities have a really hard time taking them out. As a parent you are 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 bullshit.

‘At the end of the day though, the rewards do outweigh the hard stuff. As a parent you do 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

• 4% of Australian children aged 0-14 years have a disability including chronic illness, intellectual or physical disability. The percentage is higher in Indigenous communities.
• In 2003, around 319 900 Australian children had a reported disability. 
• 69% of these disabilities referred to movement, self-care, schooling, or communication (known as core activity restrictions).
• Most parents adapt successfully to parenting a child with a disability and see their child as a positive contributor to the family and a source of happiness.

The challenges

First reactions
Grief is one of the most common reactions parents have when they first find out their child has a disability. Before having a child with a disability, parents may 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 a disability or illness. They might also wonder ‘why me?’ or ‘what have I done to deserve this?’

These feelings all lessen with time, as parents realise how happy they are to have a new child in the family.

Stress
Coping with the additional amount of physical and emotional care is a challenge. Children with disabilities may 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 may 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 disabilities. 

While stress affects all parents, single parents who have a child with a disability may quickly develop a good sense of the resources available, perhaps because they lack the informal supports that couples have.

Coping
Families of a child with a disability cope better when they are supported by their partner, other family members or community services. Having two parents to contribute to care, finances and emotional support can make child rearing easier. Parents who have a positive attitude and look at the advantages they have over other parents also tend to cope in a more healthy way. Although some parents may 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 a disability often worry that their other children are disadvantaged. In fact, studies have shown that having a sibling with a disability may encourage growth and maturity.

If you are a parent of a child with a disability, you might find that talking through your problems with other parents of children with disabilities can really help. Sometimes just talking about your difficulties helps to ease the emotional burden. In the long-term, caring can become easier as skills are learnt and you adapt to your circumstances. If you feel as though you can’t cope, it helps to speak to a professional such as a psychologist or counsellor who will understand the stresses associated with your role.

Ask your doctor for help if you want to get in touch with organisations or services that can help support you. Most community health care centres offer counselling; look in the phone directory or ask your doctor for more information.

For further help

• Association for Children with a Disability: an information, support and advocacy organisation for children with a disability and their families, based in Victoria. Freecall 1800 654 013.

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