I recently viewed a very moving TED talk on ‘recognising glass children’, a term used by some to describe siblings of children with a disability. I hadn’t heard this particular term before but of course I had heard many variations eg ‘forgotten ones’, the ‘other one’, ‘in the shadows’ etc. It is easy for people (parents, professionals, the community) to not notice these children, to see right through them as the main focus is on the child with a disability and/or parents. Adult siblings often talk about their needs being on the ‘back burner’ during childhood and beyond. It is a difficult thing for a child to grasp.
With the focus on ‘special needs’ it is easy for a sibling to not feel ‘special’ – in fact to feel not very important at all to those around him or her. Paul Keating recently talked about the importance of going through life knowing that someone thinks you are ‘special’. Such knowledge in childhood leads to greater inner strength not only in childhood but also into adulthood.
This is not meant as a criticism of parents who are often stretched both physically and emotionally with the demands of the child with disability. However, it IS a criticism of governments who continue to overlook these children.
Over the years, there has been a lot written about the stress experienced by parents of children with a disability. It isn’t seen as being negative about the child with disability, or assuming that all parents have trouble coping, but just acknowledgment that, under the circumstances, such parents ARE under stress and some struggle to manage. For example, the Australian Institute for Family Studies found that parents of children with disability had the lowest wellbeing of any group in the community. They also found them to have higher rates of depression. In many ways this is understandable. Parents might be dealing with a range of practical stresses as they navigate the service system, but they may also experience a range of difficult feelings including loss, guilt and fear, but not have opportunities to express them. Some also experience a breakdown of the relationship with their spouse/partner due to the stresses. There is recognition of this through a variety of programs designed to supportparents eg the MyTime peer support program, carer programs etc. Parent support is embedded in the policy and programs developed by our national government.
Not so for siblings. How can anyone believe that these children are not vulnerable? If parents are stressed – and they are – how can siblings be immune to this? They are CHILDREN with the emotional and intellectual maturity of children. They should not be expected to cope alone in such a situation. As well as stressed parents, siblings may also live with a brother or sister with difficult behaviours; in some cases, they may be physically hurt. They also face other challenges in the home, school and the community. And yet I repeatedly hear people sugar coating the experience of siblings. They are ‘so mature’ or ‘full of compassion’. Sure some of these children manage very well; many take only positive things from their childhood and develop a range of human qualities. But many others struggle their whole lives with a mix of feelings, including self doubt, anxiety and fear. The Australian Institute for Family Studies found that siblings, like parents, had higher rates of depression.
Siblings are not looking for sympathy but there is a huge need to recognise and support them, starting in childhood and proceeding over a lifetime. It doesn’t stop in adulthood – the challenges just change, as siblings try to navigate through choices about their own life and that of their brother or sister with a disability.
I get many emails from parents around Australia looking for support for siblings. Some are heart-breaking and I wish I could do so much more, but the options are limited, as are my resources. I recently heard from a social worker who was looking for support for an 8 year old whose older brother was in hospital with a chronic illness and permanent ventilation. The young boy wasn’t coping with his brother’s situation, but the hospital couldn’t support him. Another email was from a mother whose 16 year old was not managing well – the mother sent her daughter to a national mental health program but, after one visit, the teen did not want to go again – she said ‘what would they know?’ Another mother was worried about her young daughter who had a stutter and anxiety related to having a brother with a serious disability. She sought help from the local health service but none was forthcoming as they only saw ‘serious’ cases. It is disappointing that our health system cannot respond appropriately to these young people and possibly prevent greater problems down the track.
I also hear from teen and adult siblings, and the stories shared through online services reinforce the huge need for sibling support. But, in spite of a growing awareness of the challenges faced by siblings, and much advocacy by Siblings Australia, they are still nowhere in national policy and programs. How can that be? We don’t even have data on how many siblings there are in Australia or what roles they play in the lives of those who live with a disability! Regarding numbers, we have to extrapolate from the data we have about children/adults with disability. The number is in the hundreds of thousands.
I cannot think of any other group of vulnerable children who do not have some kind of national focus on their needs. As well as data collection and research there needs to be a focussed workforce development program for people working in the disability, health and education sectors. Maybe then, these ‘glass children’ will start to be acknowledged, connected to support and develop greater strength. That would be good, not only for the sibling, but for their whole family.