Living with a Disabled Sibling.
July 7 2020
Grace Williams has a brother with severe autism, she has also just finished a finished a degree in BA (Hons) Special Education and has experience as a teaching assistant in special schools. Here she discusses why siblings of disabled people should feature more when care provision is being discussed, and why they need support too.
Living with a Disabled Sibling: Should More Support be Provided?
I have a younger brother with autism who is non-verbal and displays challenging behaviour. I would like to raise awareness of what it is like having a sibling with a disability and promote the need for more support.
Sibling relationships are so important
The sibling relationship is significant. Siblings grow up together and experience important life events together. So having a sibling with a disability is life changing. It has a huge impact on an individual, both positive and negative.
When a child starts to show traits and is then diagnosed, your world is turned upside down. For my family and I, life was straightforward until my brother started to show traits of autism at two years old. He began flapping his arms, constantly humming, he became unresponsive to his name, had a lack of interaction and stopped speaking. It was confusing and heart-breaking to watch him change. After a range of assessments, he was diagnosed with autism. This life changing news is unimaginable for most people. At the time, if I am honest, I did not understand autism or what this meant for my brother. But it did mean that we had to quickly adapt to our new life.
Firstly, I would like to discuss the many joys which have come from having a disabled sibling. It has made me more caring, patient and understanding. I enjoy spending time with him, and we have a good relationship despite me moving away for university. Our relationship is like no other and a bond with a child who cannot speak is something you cannot explain. There are very special moments that I treasure. Such as him coming out of his own world to interact with me. The small moments are important with a child with complex needs.
As I grew up, autism began to interest me more and more and I began to research more about it. It led me to pursue a career as a special needs teacher. I have just finished a BA (Hons) degree in special education. The degree allowed me to expand my knowledge on a range of special needs and the importance of education.
Despite this, growing up there have been many challenges. As a family we had to quickly adapt to an extreme change in our lives. We learned to care for a child who has rapidly changing behaviour and obsessions. We would often get family or friends asking us how we cope. But it is not a choice. You have to carry on no matter how difficult it is or how many sleepless nights you have had.
One of the most challenging things is not being able to have a simple conversation with him. You can’t ask why he is upset or annoyed that the two options of cereal you offered are not correct. You just have to guess and hope you get it right.
Growing up was challenging and my friends did not have similar experiences. Some of them did not understand why they could not come to my house. They would question why I could not meet up with them all the time. They did not have the same responsibilities. It was difficult too during my GCSEs and A levels to concentrate on schoolwork. My brother’s behaviour was disruptive and I had sleepless nights. On top of all this, you worry a lot. You worry about if you’re doing enough for him, if he is getting the right support and about the future.
Worry for the future
The future is a constant worry. It is always looming over me as my parents will not be able to care for him forever. This is something that is difficult to come to terms with. My brother has influenced my career choice. He is very important to me. However, it does not take away my belief that siblings of disabled children and adults need more support.
I have noticed from my own research at university and reading there is a lack of research on siblings. The role siblings take on is rarely acknowledged. Siblings are not mentioned in special educational needs policies. They do not typically receive any information about services or support available. This confuses me as, like their parents, siblings have first-hand experience of the disabled child. They often become carers for their disabled sibling in the longer term and provide a key part of the support structure. This should be recognised in the official paperwork and processes.
Siblings need support too
When family support is provided, siblings tend to be an afterthought. There are a few charities, such as Sibs and the Children’s Society in the UK, but support is patchy, and can be hard to navigate. Many families are unaware of what is available and might not know where to look. Often, support for siblings is not part of the care package offered by charities or authorities. Schools are rarely aware of the stresses a sibling is under.
There must be a change for families, and it is necessary that siblings are provided with support. Siblings can experience feelings of isolation and anxiety and depression. Siblings are forgotten about and often do not have any one to talk to growing up who understands their situation. Therefore, I suggest a need for support. Policy makers, charities, schools, local authorities and mental health services should all look at providing more support. This could include helplines, raising awareness, schools offering someone to talk to and teachers being aware of their situation. Therapy and coping strategies should be offered to siblings as routine by local authorities and mental health services. Finally, siblings should be included and considered in the conversations around care provision and planning.
We love our siblings and improved support for us, would mean improved support and family life for all of us.
Grace has just finished a degree in BA (Hons) Special Education and in September will begin school-based teacher training. She has a range of experience such as she currently works as a teaching assistant in a special school and has undertaken various work placements in both mainstream and special schools. She also has a brother with severe autism who inspired her to work in the field of special needs. Grace is interested in raising awareness of the impact of having a disabled sibling and aims to teach with children with autism in the near future.
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