Young Siblings

Disability and chronic illness are a part of life for hundreds of thousands of Australian familiesREF. In childhood, such chronic conditions may affect a child’s development, and their ability to participate in their family and in the community.

Families that include a child with disability are much like other families – they live and laugh, have ups and downs, and try to do the best they can. However, meeting the needs of children with disability in the context of the whole family can require additional resources and effort from parents and/or caregivers. Over time, the challenges faced can have a cumulative effect which can put all family members at risk of emotional and psychological difficulties.

Parents and caregivers are reported to more likely experience depression, which can have an impact on all childrenREF. Often parents do not access services for themselves or their other children as the focus is on the child with disability.REF

There may be other barriers that hinder access to family or sibling support services, which can add to parents’ frustration and guiltREF. The more that sibling inclusive practice is embedded in disability, health and education services, the easier it will be for families to access the support they need.

Section 1: The potential impact on siblings

The potential impact on siblings
Challenges for siblings can be within the family and outside the family.

The sibling experience can be confusing. On one hand, many siblings feel love and protection towards their brother or sister. But they might also feel resentment, embarrassment, guilt, sorrow and fear.

Young children might lack understanding of what is happening around them, lack the skills to manage the big feelings they experience, and/or feel like they are less important than other family members. They might feel pressure to take on too much responsibility, to ‘make things right’ and to ‘not make waves’ as they see parents becoming stressed. They might be restricted in pursuing their own interests and activities.

Outside the family, for example, the reactions of others can be distressing, especially for younger siblings.

These are not either/or experiences, meaning siblings may feel a whole range of emotions throughout their life.

Whilst research about siblings can be mixed, there is a lot of evidence to show that some siblings are at risk. Engagement with siblings themselves through Siblings Australia confirms this. Some examples in the literature include:

  • Siblings of people with disability have a significantly increased risk of depression, regardless of any caring role and have increased rates of physical health problemsREF.

  • Some siblings are both physically and emotionally harmed by a brother or sister with disability, and this is often not reported by parents as they are fearful of what outcomes might ensueREF.

  • Growing up with the needs of someone else always taking priority, siblings learn to put their own needs second which can also have implications for relationships over the lifespanREF.

  • Education outcomes may be affected by anxiety, tiredness, depression, social stigma and worry for parentsREF.

  • The complexity of sibling relationships can lead to low self-esteem, shame, or a sense of worthlessnessREF.

Section 2: A case Study

Lucy is an 8-year-old sibling to her older brother, Tom who is 10 is autistic. They live in a home with their parents and have two sets of grandparents involved in their lives. Due to ongoing stress, the parents are finding it hard to cope.

Tom’s behaviour is becoming more difficult to manage – he finds communication a challenge and has multiple ‘meltdowns’, possibly related to being over-stimulated and/or frustrated. Mornings are trying for the whole family as they aim to get ready for work and school, but inevitably they are always late, as it takes some time to help Tom get ready. Everyone starts the day with stress.

Lucy doesn’t always realise it, but she is often acting as a coach or mentor to her brother.

At times, Lucy feels like her brother doesn’t love her as he cannot respond much to her attempts to connect. She also feels left out sometimes as her mum is often taking Tom out from school for therapy appointments. Her schoolmates have started to mock her brother and she doesn’t know what to say. She feels embarrassed but also feels badly for her brother and wishes she could stop them saying those things. She has started to say she doesn’t want to go to school. She has started to switch off trying to engage with her brother.
She sometimes wishes she had a brother like her friend’s brother, and then she feels guilty for feeling that way.

Lucy’s parents feel overwhelmed trying to manage their family and their work, alongside getting as much therapy for Tom as they can. They have a Support Coordinator involved in assisting them with the NDIS, but it still feels so hard getting what they feel they need for Tom to reach his potential. They feel pressure to get as much therapy as they can for their son. They feel no-one talks to them about their family and what all of their needs might be, everything is focused on Tom. Over time, Lucy feels more and more isolated and resentful.

Section 3: How being SibAware can help

Support in the early years might lead to a very different outcome, where family relationships are strong, and Lucy takes a keen interest in her brother and his life.

Support for the family might come through the NDIS or through mainstream services.

NDIS capacity building supports might include assisting Lucy’s parents to support her. These supports might also include helping Lucy to identify her own needs, to understand herself better but also how to understand and engage with Tom more effectively. These supports could help Lucy to respond to friends who may then respond in a kinder way to her brother and other children with disability.

Suitable goals to support the sibling relationship for a young child with disability might include ‘to strengthen my relationship with my sibling’, or ‘to build the capacity of my sibling and me to enjoy a strong relationship’, or ‘to learn ways to interact and communicate with my sibling, to help me to enjoy better relationships in my family and to extend these skills to relationships outside my family’. Goals will depend on the individual needs of the family.

Mainstream supports can include intervention through the health system – GPs, therapists etc, or the education sector. Connecting with other young siblings (e.g., SibWorks) could help her feel less alone and give her tools to manage the various challenges.

With support, the family might learn how to share fun activities together, even if just for short periods. The sibling relationship can be an important one for them both. There might still be rocky periods, but the family will likely feel more united in managing these times – they are there for each other and Lucy knows she can talk about her challenges with her family and with others.

These approaches ensure that Lucy can more readily manage her stresses and interact more positively with her brother. These changes can also lead to greater confidence in her parents in relation to supporting both children.

The SibAware™ approaches do not eradicate stress for families, but they support more opportunities for families to work together to ensure they can function as best they can.

Conclusions

Recognising and supporting siblings is vital for families and therefore it is vital for service providers. Siblings often navigate unique challenges that can impact their well-being. Acknowledging and addressing their needs alongside those of your clients fosters a more inclusive and compassionate approach, contributing to the overall resilience of families and communities. By extending support to both your clients and their siblings, you can play a crucial role in promoting a whole-of-family approach to your practice.

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