Family support

My New Year Resolution is to keep this blog up to date! I thought I would take snippets from my presentation at the ‘Creating Connections’ conference and expand different sections through this blog. I look forward to any comments.
When we start thinking about siblings of children and adults with a disability or chronic illness or mental illness (I will use the term ‘disability’ to encompass all these meanings), we have to start with the family. What do we know about families? What support do they need? When?
We know that the number of families which include someone with a disability is increasing. In Australia there are over 200,000 young people under 25 years who are living with a severe or profound disability. There are many more with chronic illnesses and mental illness and there are many more who are older than 25 years. Families which include disability are more like other families than not – they love and laugh and cry just like all families, and want to connect with the community just like other families. However, there can be more stresses and these stresses affect the WHOLE family. This time I will focus on the experience of parents, my next blog will focus more on siblings.
If we consider parents, we know that some are enriched by the experience of having a child with a disability and cope with the stresses very well. Some parents need more support to move forward and manage the day to day experiences.
We know that parents of a child with a disability have higher rates of depression. The 2008 AIFS report The Wellbeing of Australians: Carer Health and Wellbeing (the largest ever survey into the health and wellbeing of Australian carers) found:
1) More than 1/3 family carers in Australia are severely depressed and/or stressed and
2) The presence of a person in the household who requires care severely compromises the wellbeing of other family members, whether they have primary carer responsibility or not.
We also know that families which include disability have a higher rate of marriage breakdown. Why might this be so? We know that a mother and father’s reactions can be quite different. Most people, when expecting a child and asked what they hope for, will say that they “don’t care as long as it is healthy”. When the child is not healthy it can create a huge amount of grief and uncertainty that can go to the core of a person’s self perception and world view. So many things come into play – in particular, the meaning they place on having a child with special needs. A dear colleague, Dr Liz Bruce, now deceased, spoke at our 2004 conference about parents’ reactions as being akin to post traumatic stress disorder. Through the many workshops I have run both in Australia and overseas I have seen firsthand how the grief can affect individuals and their relationships. And not many have an opportunity to really work through the feelings. Parents are tired of the clichés, “you must be so strong to cope with this”, or “you only get given what you can cope with”, or “you were specially chosen to care for this special child”. All of these comments result in parents not feeling they can talk about their true feelings. They can struggle with expressing the grief as they can be concerned about what that means in terms of their feelings about their child. It can be too difficult to share even with a partner. Many mothers and fathers just cannot support each other and, without outside support, it can become all too difficult to maintain the relationship. And many parents don’t ask for help for themselves as the focus is on the child and what he or she needs.
Of course, many relationships are strengthened by the experience of having a child with a disability. Parents can become closer and learn to share the challenges, joys and triumphs along the way.
But, in general, we do not provide enough support in the early period after diagnosis. All members of the family should have support immediately in order to process feelings, both individually and together. Parents need help to understand that feelings of loss or grief or anger for what they envisaged of the future are totally understandable and do not mean they love their child any less. Their idea of the future might eventually need adjusting. Once they feel able to grieve for ‘what was’ they are more likely to move forward with ‘what is’ in a constructive way. If we can support WHOLE families in the early stages it sets the scene for families to be stronger and more able to support each other in the longer term – and that includes siblings.
Again I welcome your comments.

Further reading:
Cummins, R.A., Hughes, J., et al. (2008)The Wellbeing of Australians: Carer Health and Wellbeing
Bruce, E.J. Elite Parenting: Mother, father, siblings and children adapting to disability. Sourced from http://www.emotionalhealthcentre.com.au/elite.htm