I had contact last week with another adult sibling who had recently come across 'sibling literature'. She had read my book, Siblings, (but there are several books for sibs by sibs out there), and talked about how she had cried the whole way through. There was so much resonance in what she read. So much bottled up feeling that was finally having a way to release. This was not an isolated scenario. And I stop to wonder yet again why it is that siblings in their 40's - 50's are accessing other sibling stories so late. We wouldn't dream of saying to a parent of a child living with disability that they couldn't have contact with another parent for decades to come. It is recognised that there is enormous value in having contact with others who share the same path.
Most children are very accepting of differences. Their brother or sister with a disability is just that, their brother or sister first. In many cases they adapt well to whatever it is that a brother or sister can or cannot do. But as they become older there may be some challenges. They may pick up messages from other members of their family or from people outside the family. They may pick up on stress around them or start to feel overlooked within their family. Or they may become aware that people stare or say hurtful things. We can't protect children from difficult experiences but we can provide them with the tools to cope.
There is increasing understanding of what siblings need to become stronger and more resilient. And it isn't difficult. If we support them from a young age not only will they feel better about themselves but also it is likely they will enjoy a stronger, closer relationship with their brother or sister with disability. Given that sibling relationships last a lifetime that can only be a good thing.
Support can come in a variety of forms - here are just a few to start with:
- an adult (family member/friend/teacher) might show an interest in the sibling and be a 'listening ear'
- extended family or friends can include siblings in activities that the child might normally miss out on
- sibling support groups can allow siblings to meet up with other children and share experiences and strategies for coping with challenges - the Siblings Australia website has a directory of sibling services around Australia - you can do a search. See search
Sibling groups are not for everyone but many siblings gain enormously from connecting with other sibs. The children who came to the
SibworkS program we ran last month made new friends; explored the things they enjoy doing with their brother or sister and the things they like doing on their own; explored their feelings; shared ideas on how to cope with a range of challenges eg teasing and bullying (a big issue in this particular group). Feedback from parents was extremely positive, with many of the children seeming more relaxed and more able to interact positively with their brother or sister with disability.
Our dream is that all siblings have an opportunity to connect with other sibs.
Saturday, March 27, 2010
Sunday, March 7, 2010
The experiences of siblings
Hello again. My frustration continues this month with no support from the government for our work. It seems that siblings just do not rate when ‘families’ are considered. There is a lack of understanding about why they might need support. If we can get in early and support the whole family they will be stronger and more able to support each other. This time I am going to look specifically at some of the issues for siblings. We know that siblings are likely to have the longest relationship of all with the person living with a disability.
What are some other things we know about siblings?
• Some siblings are enriched by their experiences, they cope very well (just like parents), but some need more support (just like parents)
• Siblings, like parents, also have higher rates of depression (AIFS 2008)
The Australian Institute of Family Studies report, The nature and impact of caring for family members with a disability in Australia, also highlights the risk of siblings experiencing depression, especially when a parent has also experienced it.(1)
• Each sibling experience is unique and it changes over a lifetime – the experience for a four year old is very different to a 24 year old to a 54 year old
• Siblings play an important role in the family and may add much to the quality of life of the person with a disability – one sibling described siblings as ‘the silent army’
• Siblings have their first experiences as children when they lack maturity to understand, interpret, and work out ways to respond
• Very few siblings meet another sibling during their lifetime
• Very few siblings access support
Many siblings talk about: love and concern for their brother or sister; compassion for those less well off; an understanding and acceptance of differences; developing greater maturity; and learning skills that they take with them into helping professions.
Others report a range of difficulties. And often it is not about the disability per se but how people communicate, the reactions of others, or the type of social connections. There can be a combination of factors?
What are some of the difficulties for siblings?
• Feeling overlooked – growing up they may feel their needs are on the ‘back burner’
• Communication issues
Siblings may lack information about the disability and its impacts; they may
have mixed feelings eg confusion, grief, guilt, resentment; and if they have mixed feelings it may be difficult to talk to anyone about them
• Isolation - social connections are vital for all of us but siblings may miss out. Parents can’t always get them to social situations; families of children with a disability are often isolated; and it may be difficult to have friends over.
I felt completely isolated. I thought I couldn’t share any of that part of my life with my friends. They didn’t understand and I felt alienated from them. Other kids never had the same responsibility (2)
• Siblings may have extra responsibility - they may try protect parents, make things right, be the 'good child'.
• Siblings may have to cope with other people's reactions - there can be stigma around disability – one sibling found that other children did not play with her as she had ‘disability germs’ – one author has described it as ‘disability by association’. (3) There may be teasing of the sibling or of their brother/sister.
For teen and adult sibs there may be other concerns
• Some siblings talk about their concerns about the future eg Is it ok for me to move away from home? What will happen when my parents can no longer provide care for my brother or sister? What should my role be? Will I find a partner who will help me with the responsibility? Should I have children of my own? What if they have disabilities? How will I balance their needs with my other family roles?
And later adult siblings may juggle the needs of ageing parents, their own children, and their brother or sister with a disability – in this situation, siblings have been described as the ‘Club sandwich’ generation.
Next time I will explore support for siblings. As always, your thoughts are welcome.
References
1 Edwards, B., Higgins, D.J., Gray, M., Zmijewski, N., Kingston, M. (2008). The nature and impact of caring for family members with a disability in Australia. Australian Institute of Family Studies, 2008.Research Report, no. 16
2 Strohm, K.E. (2002) Siblings: Brothers and Sisters of Children with Special Needs. Wakefield Press, Adelaide. P.19.
3 Burke, Peter. (2004). Brothers and Sisters of Disabled Children. Jessica Kingsley, London
What are some other things we know about siblings?
• Some siblings are enriched by their experiences, they cope very well (just like parents), but some need more support (just like parents)
• Siblings, like parents, also have higher rates of depression (AIFS 2008)
The Australian Institute of Family Studies report, The nature and impact of caring for family members with a disability in Australia, also highlights the risk of siblings experiencing depression, especially when a parent has also experienced it.(1)
• Each sibling experience is unique and it changes over a lifetime – the experience for a four year old is very different to a 24 year old to a 54 year old
• Siblings play an important role in the family and may add much to the quality of life of the person with a disability – one sibling described siblings as ‘the silent army’
• Siblings have their first experiences as children when they lack maturity to understand, interpret, and work out ways to respond
• Very few siblings meet another sibling during their lifetime
• Very few siblings access support
Many siblings talk about: love and concern for their brother or sister; compassion for those less well off; an understanding and acceptance of differences; developing greater maturity; and learning skills that they take with them into helping professions.
Others report a range of difficulties. And often it is not about the disability per se but how people communicate, the reactions of others, or the type of social connections. There can be a combination of factors?
What are some of the difficulties for siblings?
• Feeling overlooked – growing up they may feel their needs are on the ‘back burner’
• Communication issues
Siblings may lack information about the disability and its impacts; they may
have mixed feelings eg confusion, grief, guilt, resentment; and if they have mixed feelings it may be difficult to talk to anyone about them
• Isolation - social connections are vital for all of us but siblings may miss out. Parents can’t always get them to social situations; families of children with a disability are often isolated; and it may be difficult to have friends over.
I felt completely isolated. I thought I couldn’t share any of that part of my life with my friends. They didn’t understand and I felt alienated from them. Other kids never had the same responsibility (2)
• Siblings may have extra responsibility - they may try protect parents, make things right, be the 'good child'.
• Siblings may have to cope with other people's reactions - there can be stigma around disability – one sibling found that other children did not play with her as she had ‘disability germs’ – one author has described it as ‘disability by association’. (3) There may be teasing of the sibling or of their brother/sister.
For teen and adult sibs there may be other concerns
• Some siblings talk about their concerns about the future eg Is it ok for me to move away from home? What will happen when my parents can no longer provide care for my brother or sister? What should my role be? Will I find a partner who will help me with the responsibility? Should I have children of my own? What if they have disabilities? How will I balance their needs with my other family roles?
And later adult siblings may juggle the needs of ageing parents, their own children, and their brother or sister with a disability – in this situation, siblings have been described as the ‘Club sandwich’ generation.
Next time I will explore support for siblings. As always, your thoughts are welcome.
References
1 Edwards, B., Higgins, D.J., Gray, M., Zmijewski, N., Kingston, M. (2008). The nature and impact of caring for family members with a disability in Australia. Australian Institute of Family Studies, 2008.Research Report, no. 16
2 Strohm, K.E. (2002) Siblings: Brothers and Sisters of Children with Special Needs. Wakefield Press, Adelaide. P.19.
3 Burke, Peter. (2004). Brothers and Sisters of Disabled Children. Jessica Kingsley, London
Thursday, January 7, 2010
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
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
Monday, December 7, 2009
Siblings as Carers?
Welcome to my first ever blog. Having just had our 2nd National Conference, Creating Connections in Adelaide, it seemed a good time to start. It was a wonderful event with a number of highlights for me.
Of course it was a celebration of the work being done for siblings around Australia, and also in the US. It was also an opportunity to connect with other family members, providers, researchers and policy makers, share current research and think about future directions in sibling support. The adult sibling sessions provided a unique opportunity for siblings aged from 17-73 to come together and share perspectives and future needs.
Through this blog I will reflect on a number of issues related to siblings of people with a disability. Hopefully the posts will encourage some discussion around these topics.
This first one will focus on the link between siblings and the term ‘carer’
For some time now I have had some concerns around the use of the word ‘carer’ and ‘young carer’ in relation to siblings. The conference strategy session reinforced this view, and gave a very clear message that siblings needed to be considered separately from the terms ‘carer’ and ‘young carer’.
Let me state from the beginning that I am aware of the tremendous work done by carer and young carer programs around Australia and this reflection is in no way a criticism of that work. I am just highlighting some difficulties around the use of the words in reference to siblings of people with disabilities. So what ARE some of the concerns? In no particular order:
• Often siblings, especially when young, take on a ‘secondary carer’ role, to the parent's 'primary carer' role and so can be overlooked by carer groups
• Siblings do not relate to the term ‘carer’ – they see what they do is an extension of being a brother or sister. They are less likely to respond to ‘carer’ programs than sibling ones
• There is some overlap between the issues for carers and for siblings but there are also some very big differences
• Siblings can have some difficulty developing their own identity. If we start to identify them as ‘young carers’, this process can become even more difficult. Also the label is likely to last a lifetime, of course changing to ‘carer’ as they age.
• There need to be choices in any caring role – young people find it much more difficult to make those choices
• Maybe the term ‘carer’ can be more acceptable as siblings age and parents are no longer around to provide care but it still seems that both the sibling and the person with a disability do not like the term ‘carer’
• We just conducted an online survey of adult siblings and had over 90 responses. Overwhelmingly sibs said they did not want to be seen as a carer to their brother or sister with a disability – they saw themselves as brothers and sisters first
• They believed that their brother or sister with a disability preferred them not being seen as their carer. It is understandable, from a dignity point of view, that people with disabilities would prefer their brothers and sisters to be just that, and not their ‘carers’
• Using the term ‘carer’ or ‘young carer’ legitimises the roles that carers play, which in some ways is a good thing, but on the other hand it also makes it easier for governments to not take responsibility for the lack of services. Does the government expect siblings to take over the caring role? Some would argue this is not reasonable of governments. However, if this is the expectation, surely there should be some open discussion about this. Siblings need to be supported in whatever role they choose to play. And of course that may change markedly over a lifetime.
Of course it was a celebration of the work being done for siblings around Australia, and also in the US. It was also an opportunity to connect with other family members, providers, researchers and policy makers, share current research and think about future directions in sibling support. The adult sibling sessions provided a unique opportunity for siblings aged from 17-73 to come together and share perspectives and future needs.
Through this blog I will reflect on a number of issues related to siblings of people with a disability. Hopefully the posts will encourage some discussion around these topics.
This first one will focus on the link between siblings and the term ‘carer’
For some time now I have had some concerns around the use of the word ‘carer’ and ‘young carer’ in relation to siblings. The conference strategy session reinforced this view, and gave a very clear message that siblings needed to be considered separately from the terms ‘carer’ and ‘young carer’.
Let me state from the beginning that I am aware of the tremendous work done by carer and young carer programs around Australia and this reflection is in no way a criticism of that work. I am just highlighting some difficulties around the use of the words in reference to siblings of people with disabilities. So what ARE some of the concerns? In no particular order:
• Often siblings, especially when young, take on a ‘secondary carer’ role, to the parent's 'primary carer' role and so can be overlooked by carer groups
• Siblings do not relate to the term ‘carer’ – they see what they do is an extension of being a brother or sister. They are less likely to respond to ‘carer’ programs than sibling ones
• There is some overlap between the issues for carers and for siblings but there are also some very big differences
• Siblings can have some difficulty developing their own identity. If we start to identify them as ‘young carers’, this process can become even more difficult. Also the label is likely to last a lifetime, of course changing to ‘carer’ as they age.
• There need to be choices in any caring role – young people find it much more difficult to make those choices
• Maybe the term ‘carer’ can be more acceptable as siblings age and parents are no longer around to provide care but it still seems that both the sibling and the person with a disability do not like the term ‘carer’
• We just conducted an online survey of adult siblings and had over 90 responses. Overwhelmingly sibs said they did not want to be seen as a carer to their brother or sister with a disability – they saw themselves as brothers and sisters first
• They believed that their brother or sister with a disability preferred them not being seen as their carer. It is understandable, from a dignity point of view, that people with disabilities would prefer their brothers and sisters to be just that, and not their ‘carers’
• Using the term ‘carer’ or ‘young carer’ legitimises the roles that carers play, which in some ways is a good thing, but on the other hand it also makes it easier for governments to not take responsibility for the lack of services. Does the government expect siblings to take over the caring role? Some would argue this is not reasonable of governments. However, if this is the expectation, surely there should be some open discussion about this. Siblings need to be supported in whatever role they choose to play. And of course that may change markedly over a lifetime.
Ultimately we need to be mindful of sibling issues being lost under the ‘carer’ umbrella. I look forward to your thoughts.
Subscribe to:
Posts (Atom)
Posts
