Prakash – “My brother and sister both have severe learning disabilities and epilepsy”

I remember learning about my brother and sister’s disabilities

My first memory of learning about my brother’s disabilities was when I was five years old. I couldn’t understand why Prasad was always shouting and laughing. I remember asking my mother why this was so and she replied “He is a special child”. I was confused as to what that meant. My five-year-old mind had no context. I asked my eldest brother, who replied with the same thing. So at that point, I developed the idea that it was normal for Prasad to be the way he was, and I assumed his behaviour was part of his personality. I was none the wiser at that age.

My sister stayed at a residential school during the week and came home at the weekends. Mira was not hyperactive like my brother – in fact, the polar opposite. She was very quiet and within herself, unless she was hungry (like many of us, she got ‘hangry’ – angry and hungry!).

One day, I remember asking my dad why we kept going to pick Mira up only to drop her back after two days. He replied: “She’s in a special school during the week and there wasn’t one close to where we live”. The school was a 45-minute drive each way, which for me felt like forever. But hey, I did what any child would do in the 1980s and slept in the car due to boredom of counting how many cars that would pass. I don’t think I ever got past 100.

I was bullied at school

As I started to go to school and interact with children of my peer group, it soon became very apparent that I was the only one in school that had siblings who had learning disabilities. Everyone else had siblings that were unlike mine. Ones where they went to the park together or family events/holidays together, or even visit family or have family visit them on weekends. While mine was spent at home or in a car helping my parents with my disabled siblings.

The more I started realising that nobody else was in this position, the more I became within myself. I didn’t show my feelings at school. I just went to school, did what had to be done, and came home to do my homework and help my parents. It was here my two worlds of home and school started forming. I had no way of expressing my feelings and became someone who got things done quietly.

This lead to a many long years of severe bullying at school. Classmates either saw me with my siblings or heard about them through the famous school playground gossips. The more I was bullied the more I just absorbed what was happening as reality. I thought “This is just how life is” and never reacted to any of the things that were said or done. I remember in my pre – O Level (GCSE) year plucking up the courage to speak to my teacher about an incident where I was bullied and punched. The teacher said they would speak to the boy in question. As you can imagine, nothing ever happened and this went on until I finished my exams.

At the time, I felt that all this was normal. I didn’t feel I could share it with anyone at school and I couldn’t share it at home because my parents already had a lot to contend with looking after my disabled brother and sister and running the house.

I had a lot of responsibility from a young age

Childhood was a whirlwind. My eldest brother and I were forced by circumstances to become responsible from a young age. We supported my parents to care for Mira and Prasad, at the same time as balancing school life and everything associated with it. It was important to me to pass exams and get a good education. I feel blessed that my parents made sure we gave 100% to secure this for ourselves.

Mira moved back home in 1998 when her school closed down due to funding issues. This caused its own set of challenges, as she was not used to being at home all the time. In a way, I’m so glad she moved home because I got to spend time with the person I called my sister. I felt I had a family environment, with everyone under one roof.

My sleep was disrupted

I used to get woken up in the early hours by Prasad who hardly slept. We nicknamed him the Duracell bunny, because he would just keep going and going and showed no signs of tiredness.
I have embraced my habit of waking up at the crack of dawn thanks to my brother waking me up when we were children. I now go for an early morning walk or to the gym, come rain or shine. This gives me some ‘me time’, as well as keeping me in good health.

Summer holidays were my respite

Summer holidays were great for me because it gave me time away from the bullying and being beaten up at school. The holidays were also great because I knew I would get to see my grandparents for a few weeks in Malaysia. This gave me some level of normality with the outside world.

My Mum or Dad needed to stay in the UK to take care of Mira while she was in her school and the rest of us would go away. As Prasad grew up it became harder for him to travel on a plane and so it became more convenient for my grandparents to come to the UK instead. This meant we missed out on holidays and special times, like birthdays or extended family weddings.

My worries as an adult sibling carer

As an adult sibling carer to Mira and Prasad their health is a constant worry to me. I worry that paid carers won’t fully understand how important it is to maintain their routine and eating habits – which have helped fend off seizures. I worry about Mira falling, as long term use of her medication have caused her to develop osteoporosis and frailty. She’s already had two leg injuries due to weakened bone mass, which has lead to a reduction in her mobility.

Prasad has difficulties sleeping at times and I know that sleep problems can be a trigger for his epilepsy. Whenever we take them both out together or individually we are constantly making sure they are in environments that are stimulating to them and engaging.

At the moment, both of their medication seem to be controlling things well, and both have regular check-ups so we can stay on top of their health needs….which they both are not always keen on.

The impact on my own life

While pursuing my own life goals I found a partner who welcomed with open arms both my siblings (which was my first and most important requirement). She is now a major part of their life, as they are of hers.

In 2016, I had to undergo open-heart surgery for a congenital heart problem that had gone undetected. This came as a shock to me and everyone in my inner circle. I was unable to have any interaction with Mira and Prasad during the first three months of my recovery after surgery. After then, it had to be slowly increased as I got my strength back and became more mobile. I had to feel safe and comfortable having them around again, so I could be as supportive to them as I was before the surgery.

While I was recovering from the surgery, I became very aware of how important my health was in being a carer for my brother and sister. I had never thought about this before. I just kept getting things done in a systematic way to maintain their routine. But now life had thrown me a new challenge – “How can you maintain their routine, if you are not in good health?” As a result, I have had to make changes to my work-life balance (or as I like to call it, life-work balance). I don’t try to follow the crowd, but try and live life in a way that works for me.