I recently spoke to a mother who was worried that her 28-year-old neurotypical son seemed to be distancing from the family and showed little interest in his brother who is neurodiverse. He lives in a different city and has recently become engaged to be married. Like most parents, this mum worries about the future and who will look out for her neurodiverse son when she is no longer able.
These can be difficult topics to discuss within a family. There can be different beliefs and feelings that have developed over many years that can be a barrier to open communication. Parents may feel particularly vulnerable as they age and start to think about the future. They may feel concern, not only in relation to their child with disability, but also the impacts on siblings and the extra responsibility that may fall to them. They may feel some guilt about the extra attention given to one child over others in the family, but also feel unable to manage that effectively, even as children age.
Siblings may also struggle to articulate their feelings. As children they may have felt some confusion about what was happening around them, resentment over their needs seemingly taking a back seat, but also sadness and guilt. Despite feeling love and care for their brother or sister with disability, they may have struggled to connect and not been given skills to support that relationship. As they become older, siblings might worry about possible future responsibilities and how they might balance those with their own goals.
Sometimes adult sibs ‘move away’ from their family to develop greater independence and this can worry parents. However, if siblings are allowed to stretch those bonds to ‘find themselves’, they are likely to spring back in their own time. In the meantime, this is an opportunity for parents to celebrate siblings’ life goals and successes.
For some siblings, navigating adult relationships, especially romantic ones, can be complex, knowing that a future partner will likely need to share some of the responsibility for a brother or sister-in-law. Some might create distance for a while as they try to build such a relationship first. As an aside, some siblings use their brother or sister as a type of ‘litmus test’ – does this potential partner accept the person with disability? If not, they may not be worthy of further involvement.
Siblings might also have uncertainty about what roles they (and their future partner) will be expected to play. They might feel the need to create some distance or independence, especially if they worry that parents might expect more involvement than they are willing or able to give. On the other hand, some parents don’t want to bother siblings at all, but this can, in fact, lead to even more worry for siblings. Most siblings want to be involved in conversations about the future and to know that there are plans in place to support their brother or sister when the inevitable happens.
Communication is always the key – asking sibs about how things were/are for them as they start to develop independence. Share your own concerns and vulnerabilities. Talk openly about possible future plans for the person with disability with the whole family, including the person with disability as much as possible, and what roles will be needed. Siblings Australia has a dedicated resource to assist siblings with their future planning journey. SibPlan, built from the sibling perspective, covers everything from funding options (including what happens when circumstances change), social, recreation and employment, home and living options, guardianship and administration, wills and so much more. It includes personal profiles for both the sibling and person with disability to ensure everyone is working towards the same goals and provides the opportunity to record relevant information about the person with disability – their medical practitioners, NDIS information, their likes and dislikes – so that anyone could pick that up and know all that is needed to ensure the person with disability has their needs met. This is particularly important for people with communication difficulties. It also gives siblings more confidence that you are considering these issues and ensuring that there are various people involved rather than relying totally on siblings. If they feel that your expectations are in balance with their own goals, they are likely to come back into the fold and be willing to contribute to the wellbeing of their brother or sister.
If siblings feel that others are with them on this pathway, they are likely to be more ready to take on some responsibility. A good example of this is a Circle of Support (CoS). A CoS involves a group of people in the person with disabilities life, who they know and trust, coming together to support formulating, promoting and achieving the goals of a person with disability. The circle acts as a community to support and provide practical advice, solve problems and generate creative ideas to contribute positively to a person’s life. You can find out more about Circles of Support via our SibPlan site or via our previous Blog, Understanding Circles of Support (CoS) for People with Disabilities.
These are not easy conversations but, over time and with some support, they can lead to closer families and better outcomes for the person with disability.
