Getting along together Brothers and sisters Most people with Down syndrome have brothers and sisters. Understandably, signicant resources are spent on addressing the needs of children and adults with Down syndrome. However, research and anecdotal evidence supports the view that illness and disability affects the lives of all family members. The largest ever survey into the health and wellbeing of Australian carers, The Wellbeing of Australians: Carer Health and Wellbeing found the presence of a person in the household who requires care severely compromises the wellbeing of all family members, whether they have primary carer responsibility or not. It is also recognised that siblings of children with a disability often grow up in a situation of considerable stress, without the cognitive and emotional maturity to understand the mix of feelings they experience. On the one hand, a child may feel loving and protective toward their brother or sister. At the same time, they may feel resentment, embarrassment, guilt, sorrow and fear. Without the cognitive skills and emotional maturity to understand and deal with those feelings, a childs self esteem can suffer. If children do not have access to support, then anger and guilt can turn inward and lead to shame and a sense of worthlessness or longer-term physical, emotional and psychological problems. Why we should support siblings of all ages Those siblings who have access to support early are less likely to have mental health problems, and more likely to reach their full potential. Supported siblings are also more likely to contribute to the wellbeing of the person with a disability. After all, siblings will likely be in the life of the person with a disability longer than anyone. Why would we not support them? Support is about strengthening relationships across the lifespan. Sibling support enables the whole family to be stronger and more able to support each other. However, the needs of siblings are still largely overlooked. Adult sibling concerns As mentioned, young siblings can have a mix of feelings. They might feel love and pride but also resentment, embarrassment, guilt, sorrow and fear. It is important to reect on how childhood issues might be reected in adult life. While writing the book Siblings, the author spoke to a brother of a woman with Down syndrome. It was hoped he might contribute to the book, as other siblings had done. However over time it became clear that he could not. He admitted that it had all become too difcult for him and he had, in fact, moved interstate to get away from his family. There was considerable emotion involved in this decision. As a result, he was missing a relationship with his sister but, perhaps more importantly, his sister was missing out on a relationship with him. It is easy to wonder about what had led to such family breakdown. If he had been given more support as a child would he have been more able to remain in touch with his family and contribute to the social network of his sister with Down syndrome? What would have helped reecting back Siblings have identied the following as things that would have helped them in their role as a brother or sister: Cootact .|t| ot|o s|b||ozs to 'oo. t|ov .oo oot alone and that others felt the same; Soot||oz to oao o a s|b||oz oosooct|vo ost books are from the parent perspective; |aoots |av|oz zoato uooostaoo|oz o c|||ooo needing to express all feelings; |ot so uc| osooos|b|||tv o caoz|v|oz. aoo Suooot to ooa| .|t| utuo coocoos bot| o themselves and their brother or sister. Adult sibling needs the present It is clear that the needs of siblings can vary enormously, but many siblings need both emotional and practical support. Unlike parents, many adult siblings have not had the opportunity to meet with other siblings and share experiences, yet emotional support is crucial. If there are longer term mental health issues such as depression by Kate Strohm Siblings Australia Inc www.siblingsaustralia.org.au We know that having a family member with Down syndrome can make a signicant positive impact on our lives, fostering closer family relationships and encouraging greater compassion and understanding of others. However, most families also struggle with the challenges that Down syndrome can present, and parents often have concerns about meeting the needs of children with a disability and other family members. Other concerns often include the lack of integration into everyday family life and the wider community. Voice, Winter 2008. Down Syndrome Victoria Members Journal 9 Getting along together or anxiety, they need support to work through and understand the legacy and develop strength and self acceptance. Many siblings have taken mainly positive experiences from their childhood, and certainly many siblings remain lovingly involved with their brother or sister with a disability. However, they can still benet from greater understanding of the different reactions they have brought from childhood, and the opportunity to share their stories. Even if siblings are happy to be in the lives of their brother or sister they can still struggle with their role and how to incorporate it into other aspects of their lives. Adult siblings from around the world have expressed the same issues, via internet forums and books, and talked about the value of having contact with other siblings. As one Italian brother (31) of a man (33) with Down syndrome said: I joined our group (a support group based in Rome) and since then Ive learnt that the best way to feel better as a sibling is to share ones experience with people who live the same situation. Some siblings have sought counselling and for some it has been a very useful exercise. For others it has been frustrating to nd the lack of understanding of sibling issues amongst the counselling profession. Adult siblings might also need practical support in their role as a carer (primary or secondary) for the person with a disability. Some feel comfortable taking over more responsibility as their parents age. Others are given the responsibility, with little choice, when parents die, often without any resources to cope with the decisions and actions that need to occur. Siblings might need support to deal with a mix of issues including accommodation, nancial planning, and medical care for their brother or sister. If siblings are not in daily contact with the family, they may not be aware of their brother or sisters support needs, or understand community services. Of course it is much better if planning for the future can start much earlier, with all members of the family involved in the discussions, but it is a difcult subject and one that many parents and siblings avoid. The Wellbeing of Australians: Carer Health and Wellbeing http://www.carers-sa.asn. au/healthandwellbeing.html Lamorey, Suzanne. (1999). Parentication of Siblings of Children with Disability or Chronic Disease. In Nancy D. Chase (Ed.), Burdened Children: Theor y, Research and Treatment of Parentication. Thousand Oaks, California: Sage Publications Strohm, K. E., (2002) Siblings: Brothers and Sisters of Children with Special Needs. Wakeeld Press: Adelaide Reproduced with permission from Friends Dont Count Chromosomes, Down Syndrome Association of Queensland Inc 2002 T||o' about vou sc|oo| cu|tuo ooos |t oo|v tolerate or does it welcome the presence of the student with Down syndrome? Suooot coostaot o|vs|ca| oosooco c|assos/ recreation/leisure. |oouco ba|os t|at |ossoo t|o c|aoco o cootact. segregated programs aides even formal buddies can isolate students. Suooot o|at|oos||os |o 'oa| ||o' at|o t|ao |o special programs. |ov|oo ooootuo|t|os o obos o t|o sc|oo| community to discuss disability. Remove the unknown. Allow time and space to work through discomforts. |ov|oo ooootuo|t|os o obos o t|o sc|oo| community to learn about the students support needs, including how the student communicates. Lovo|oo t|o caoac|tv o t|o sc|oo| couo|tv to include a student with Down syndrome. This requires leadership and facilitation. T||o' about .|o .||| |o|t|ato/ac|||tato/suooot o|at|oos||os. Suooot oao|ozu| soc|a| oat|c|oat|oo oot |ust oco|vo of tutoring/help opportunities for authentic contributions. |ocozo|so t|at |uoc| boa's .|t| t|o| |ac' o stuctuo can be difcult times for a student with Down syndrome but /|so t|at suooot ooos oot a|.avs oao ozao|soo activities. Also provide space and opportunities for students to nd their own connections. |ocozo|so aoo uso cooo |otoosts o a|| stuooots. T||o' about t|o '|azo' o stuooots. Lo ot|os soo them as fellow learners? Do they have an authentic involvement in school programs? '|o|oao' soo o vou soc|a||sat|oo aouoo |ooos||o how you dene it, what expectations you have of it. Re-think the nature of how students can be together. To promote friendship at a school level