Siblings of children with SEND should not be left in the cold

Grace Williams shares the positive and negative sides of living with a disabled sibling, and makes the case that all siblings of children with SEND should receive long-term support.

The sibling relationship is like no other. It is the longest relationship one will have, and siblings share a unique bond (Batchelor, 2019). Growing up together, siblings are important influences on each other’s development. Therefore, having a brother or sister with a disability will have a huge impact on one’s life. Currently, there are 2.3 million people in the UK with a brother or sister who has a disability or a long-term illness. Despite this, there is a lack of research on this topic and a lack of support for siblings.

Positives

Firstly, there are many positives of having a disabled sibling. Positives include aspects which contribute to the sibling’s life and personality such as making them more tolerant and caring. It also improves emotional development and maturity and makes individuals more understanding of others’ needs. Having a disabled sibling can also influence your career, as some people go on to work in the field of special needs. They are vital additions to this field, as they have experienced growing up with a child with complex needs.

Additionally, having a disabled sibling makes individuals realise how important family is. A lot of people enjoy caring for their sibling and spending time with them. Having a disabled child changes the family dynamics, and allows family members to forge strong bonds as they experience unimaginable, life-changing events.

Challenges

However, there are also negative emotional impacts on siblings such as difficulty adjusting, anxiety and depression. These are the topics that are most focused on in research. There are mixed findings about how siblings adjust to their disabled brother or sister, which may be because adjustment varies based on the severity of the needs of the disabled sibling.

People who have a disabled sibling are more likely to have anxiety or depression (Frith, 2008). However, anxiety and depression are complex concepts which cannot be caused by one thing alone. There is little doubt that it is difficult for a child to have a disabled sibling and that it can cause emotional and behavioural challenges and affect sibling relationships (Aytekin, 2016).

“siblings have reported feeling heartbroken and struggling to accept their siblings’ disability.”

Often siblings will be involved in caring for their sibling which at times may be challenging as children and adults with complex needs often require constant care and cannot be left alone. In addition to this, siblings have the strain and stress of becoming future carers which therefore impacts their life and the decisions they will make growing up (Smith et al, 2015). This parental role and this sense of responsibility increases with age as there are worries about what the future holds for their sibling and their parents’ ability to care for them as they get older. This is very challenging to come to terms with and means the future is a constant worry.

During the diagnosis stage, siblings have reported feeling heartbroken and struggling to accept their siblings’ disability. They often experience feelings of sadness about their siblings’ lack of typical development and a sense of grief at missed milestones.

Interestingly, the perceptions individuals have of their disabled sibling may change over time (Van der Merwe et al, 2017). Siblings who are older than their disabled sibling have reported that they have learnt to accept and understand their sibling over time, by doing research or spending time with their sibling. Younger siblings may surpass their disabled sibling and take on a caregiving role for their older sibling, leading to negative feelings (Braconnier et al, 2018). But it has also been reported that being younger than your disabled brother or sister means you have never known any different and do not need to adapt to them. Therefore, there are many different factors which contribute to the impact of having a brother or sister with a disability.

The constant emotional challenges faced by siblings can lead to feelings of loneliness and isolation. This is because their parents will be occupied caring for their disabled child and their peers will not have the same experiences as them growing up. This may mean they feel like they have no one to talk to. Often, things that most people take for granted, such as getting a full nights sleep, are impossible. On top of this, other teenagers are unlikely to understand why they aren’t allowed to come over for a sleepover or why you must leave a party early. There is also the pressure of school and exams. School becomes more demanding the older one becomes, and family challenges may be more difficult to deal with due to this stress.

Therefore, it is clear from research that siblings’ needs are overlooked, as their distress goes unnoticed by parents and professionals (Batchelor, 2019). Everyone agrees that there is a need for sibling support, but currently support is minimal. Additionally, special educational needs policy does not address siblings. This is confusing as siblings will often become responsible for their disabled sibling’s care, meaning they must be involved in planning and decision making.

The impact of having a disabled brother or sister is huge, and an individual’s background affects their whole life. This must be recognised. Therefore, siblings of disabled children need to start receiving support while growing up. Schools should be made aware of the family’s situation and they should offer someone to talk to if necessary. Charities dedicated to supporting people who have a disabled sibling do incredible work, but they are limited and not many people know that they even exist. It is vital that  the government supports these individuals as part of support offered to families with a disabled child. Our siblings mean the world to us and my brother has changed my life. He is the reason I am where I am today. We share an unbreakable bond and enjoy the time we spend together, but more support would change our lives.

Sources

Aytekin, C. (2016) ‘Siblings of Disabled Children: A General Overview in terms of Academic Studies’, International Journal of Innovation and Applied Studies, 16(3), pp. 522-527.

Batchelor, R. (2019) ‘The sibling spotlight’, PSYCHOLOGIST, 32, pp.34-38.

Braconnier, M.L., Coffman, M.C., Kelso, N. and Wolf, J.M. (2018) ‘Sibling relationships: Parent–child agreement and contributions of siblings with and without ASD’, Journal of autism and developmental disorders, 48(5), pp. 1612-1622.

Frith, U. (2008) Autism: A very short introduction. Oxford University Press. Oxford.

Smith, L.O., Elder, J.H., Storch, E.A. and Rowe, M.A. (2015) ‘Predictors of sense of coherence in typically developing adolescent siblings of individuals with autism spectrum disorder’, Journal of Intellectual Disability Research, 59(1), pp. 26-38.

Van der Merwe, C., Bornman, J., Donohue, D. and Harty, M. (2017) ‘The attitudes of typically developing adolescents towards their sibling with autism spectrum disorder’, African Journal of Communication Disorders, 64(1), pp.1-7.