Monday, 6 April 2020

Life with Maher...

On the occasion of World Autism Awareness Month, I am sharing another article about Maher. This has been written by his younger sister who has always been very eloquent about her experience of growing up with a sibling on the autism spectrum.

If this were a book, its description blurb would be: “The smell of chocolate, the taste of water, the color mauve… how would you describe these to someone who isn’t aware of their existence?
You allow the individual to experience them."
Maher – my Elder brother - was born on 12 December 1997 and I was born on 28 August 2000. It was what transpired in those three years in-between that made my birth slightly more significant and purposeful than is normal to my parents.
Within a year of his birth, Maher was diagnosed with moderate to severe Autism. My mother had to confront this numbing reality virtually all by herself as my father, the sole bread earner of a joint family, was miles away in a different country. I can only fathom the then state of her mind, by the tears that gather in her eyes every time she tells me about it.
She was forced to accept that her child would not lead an independent life, he would have to be financially secured, he would not work, he would not be married, he would not have children. He had to be trained to do even the most menial tasks and he would have no sense of danger. He would always be dependent.
It was in the midst of all of this that I was born. A second child was always a risk but it was one my parents had to take. I was never a pampered child, I found solace in books and my thoughts when my mother and brother were out the entirety of the day attending multiple therapies. I remember sitting on the sofa watching my mother train Maher, rewarding him with a French fry every time he did a task right. I always wondered why I never did those tasks, but again I didn’t need to be taught the difference between a happy face and a sad face.
It never took time for me to accept Maher, he has always been a constant in my life. He was my first friend and till date remains my best friend. Maher does not have developed speech, he does not solve algebra, and he does not write poetry. Maher is different. But, don’t we all strive to be different and to stand out?
Maher gives me a purpose. I learn from him every step of the way, he has taught me perseverance and the importance of trying. He was a kid who took ages to learn how to

use a toothbrush, but in the end, he did learn. He teaches me to appreciate life, to value the choices I have, to be kind to other people, to accept others. He makes me want to make an impact in this world, which I’m sure he would have done if he could do what I do. Yet, he chooses to remain in the shadows guiding me.
Maher will always be the person I admire most in the world. My biggest pride and joy will always be the honor to be his sister. He will always have a special place in my heart no matter where I am in the world. He has made me who I am today and I will always be dependent on him. He is unique. He is kind. He is intelligent. He is strong. Life with Maher will always be a pleasure.
It baffles me as to how humans as a race can accept the increasing possibility of complete automation of the world we live in, and yet we cannot accept each other. We have thousands of different languages and yet we cannot accept the language spoken by a child with special needs. We don’t let them socialize with our children because they behave differently from us. I feel deep – despite claims to the contrary - our belief system remains ancient. 


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