“The journey of autism, comes with heartaches, but also suprising warm hugs.”
“Before my younger brother Andrew was born, the doctor said, ‘The umbilical cord is wrapped around his neck.’ My father felt helpless. I saw him in tears as he approached grandma. He sobbed and said, ‘The hospital believes Andrew has about 72 hours to live.’ Fortunately, Andrew pulled through and won the first battle of his life.
At 3, he was diagnosed with autism; he was constantly rushed to hospitals during his epileptic attacks. My parents were always on their toes–Andrew was the apple of my father’s eye. Dad moved everything around for him–he’d wake up early, cook, give Andrew his medicine and home-school him with puzzles and threading beads. But our parents treated us equally, even though Andrew required more attention. As his sister, I felt lonely. It was a challenge for me to bond with Andrew; we couldn’t play, share stories or discuss sibling secrets.
But I’ve always felt protective of Andrew. I’ve lost count of how many times he’s been called a ‘retard’ and a ‘home grown vegetable’ by strangers. It would hurt when relatives said the same. On Andrew’s birthday, mom and I were shocked to hear my uncle telling my cousin, ‘You are fortunate you’re not spastic, like Andrew.’ I was furious! Even Dad became bitter when gifts weren’t bought for Andrew because of his condition. It was sad, but I was always the discussion at gatherings as I was the class topper, while Andrew would be left in a corner.
Andrew has severe meltdowns; he has them because he cannot be understood and not because he’s throwing a tantrum. Sometimes, he flings and breaks things. In the process, he causes self-harm by hitting himself. When he first started having meltdowns, our society thought we were hurting him. We’ve even been advised to take Andrew to holy places to be cured.
All of this pressure from society and our relatives mounted on Dad– over time, he felt like having a child with a mental disorder is shameful. He became depressed and in 2016, suffered a cardiac arrest and passed away. Still, every day, Andrew waits for dad to return home from work. When he asks about dad’s whereabouts, we tell him, ‘He’s in Jesus’ house.’
Today, I’m completing my PhD in Rights for Persons with Disabilities. I want to understand my brother better and I’ll always be there to hold his hand. I’ll only marry someone who also accepts Andrew. I enjoy filling up a pen drive with his favorite music to play to him. I feel happy teaching, feeding, bathing, cutting his nails and hair.
Autism is a painful journey, it comes with sleepless nights and heartache. But it also comes with unexpected warm hugs from Andrew, and that rare smile which lights up the room. It’s not all happy, but it’s not all sad either. These small moments with Andrew are enough… our home wouldn’t be a home without him.”
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