My name is Moon (pseudonym) and I am a caregiver for my autistic brother. This is my story.
My younger brother was diagnosed with Autism Spectrum Disorder (ASD) when he was 4 years old. When I was young, I did not know what autism was. I played with him a lot as we were pretty similar in age but I did not think much about it. It was only when I grew older that I realised he is very different from me.
Since his diagnosis, my parents have been sending him to different programmes like vocational trainings, speech therapy and schools that are dedicated to children with special needs.
As I have school commitments and my parents have to work, we currently care for my brother on alternate days. We also hired additional help from a helper because my brother requires supervision 24/7, even when he showers.
My First Step into Caregiving
When I was young, my parents would ask me to talk to him whenever he did not listen to them. They thought that since we were similar in age, I could communicate better with him. Sometimes, I would succeed and other times, I would not. As he is unable to express himself, he would cry frequently. Initially, I would feel frustrated as I could not understand what he wanted. I thought that if I were to look after him more often, I would be able to understand him better, increasing my ability to help him with his needs. That was my motivation to be a caregiver for him.
Lo and behold, it worked. Now, I would look out for his gestures and be able to interpret them instantly. For example, whenever he points at his cupboard, I would know that that is his way of telling me that he wants to go out. If he points at the clock, he is informing me that he wants to eat.
From Resentment to Pride
However, being a caregiver did not always come easy for me. I was in primary school when I first started looking after him. As my parents were working, the duty of fetching my brother home from school was delegated to me. My friends would ask me to hang out with them but I always had to decline as the responsibility of caring for my brother was on me. At that time, I was quite resentful. I kept thinking to myself, 'Why can other people my age hang out with their friends as and when they'd like but I am not able to do so?'.
As I grew older, the feeling of resentment waned, and pride blossomed in its place. A moment that left a great impression on me was when my parents and I taught him how to spread kaya on toast. To us, spreading kaya on toast is easy. We would just grab a knife and spread it but for my brother, it was a challenging task. He took about a year to learn and when he finally managed to spread kaya on toast, I felt this overwhelming sense of pride. The feeling of pride I had felt was incomparable with the happiness attained from my own personal accomplishments.
His never-give-up attitude, despite the constant struggles, inspires me to be a better person too. He taught me the value of empathy and perseverance. If he can do it, so can I.
The Challenge Called "COVID-19"
Like any caregiver, my journey has its ups and downs. My breaking point came when COVID-19 struck. During that period, my mum was not in Singapore and my dad was constantly outside working. My school transitioned to home-based learning and my brother's school was closed. My brother, my new helper and I were cooped up at home. As my helper was new at that time, she did not know how to handle him. Furthermore, my brother did not really understand her as she did not speak much English. Thus, I was the one who was in charge, spending 24/7 caring for him.
As his routine was disrupted, he had a hard time adapting and was throwing tantrums almost every day. While having his tantrums, he can actually get quite violent. He would start to hit, scratch and bite me. Imagine having to go through that every day. I felt suffocated as I could not go out and take a breather. I had no one to tell my problems to either. That was the period of time when I truly felt helpless.
A Lack of Understanding and Empathy
Another memorable moment where I felt helpless was during circuit breaker. At that time, we were allowed to leave the house to purchase food so, I brought my brother out with me while doing so. While I went to buy food, I placed him in a seat near the hawker centre. All of a sudden, he started shouting and having a meltdown. He was rolling on the floor in anger but I did not understand what he was angry about. I had to rush back to him and ask him what was wrong but he just kept screaming. I felt like crying as I did not know what to do.
Some of the hawker stall owners started gathering around us, calling him names. A few of them wanted to call the police. I had to constantly explain to them that calling the police would not help the situation at all. However, they just kept creating a commotion and some even started to take videos of us. I felt like I was placed in a tough spot. On one hand, I had to calm my brother down and on the other hand, I had to also calm the bystanders down.
A Wish from Me to You
I sincerely hope that more people would empathise with us, caregivers. I hope you acknowledge and understand that caregiving is not an easy job. As caregivers, we are also trying our best.
The Golden Advice
To all the caregivers out there, my advice to you is to prioritise yourself. Always take care of yourself first. If you are not in the position to be able to even take care of yourself, how are you going to look after your care recipient? If you endlessly devote your focus and attention to your care recipient and neglect yourself, you will eventually fall sick, either physically or mentally. After that, who will care for your care recipient?
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