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