My super special autism twin

DR RADICA MAHASE

LAST Friday, April 10, was Siblings Day. Although it is not celebrated to any large extent in TT, it is an unofficial holiday in some countries especially the US.

Siblings Day celebrates “the very important but often under-appreciated special relationship and bond of love, friendship, and respect shared between siblings.”

Growing up with a sibling with special needs usually mean that a brother/sister is often required to display superpowers of their own, especially infinite patience and understanding. Here’s the story of one special boy who shares a deep bond with his sister, who is also his twin.

My name is Kha-Vi and I am 14 years old. My sister is Valeshka. She has autism and she is my twin.

At a young age it was extremely difficult having a twin sister who was different and who I could not understand. It was difficult when I spoke to her and she would not respond. I felt like she would always get her way. I felt that she got most of my parents’ attention and so many times it was what we could and could not do because of her. I felt like I had to tiptoe around her.

For example, I didn’t have the luxury of simply listening to music on a car ride, and watching an episode of my favourite TV show was close to impossible.

On top of that, she always wanted to play by herself, leaving me alone.

Today, we are both teenagers and things that we dreamed about in the past are our reality now, although with some limitations. We can listen to music in the car now once it’s at a certain volume. She comes to my room to check on me to play with my aircraft models, or even to play a video game with me. She absolutely loves to sing on her karaoke machine, which we bought her for her birthday and she invites me to be a part of her numerous "performances." She always creates drawings for me and slides them under my door. Sometimes she invites me to attend a "sleepover" in her room but then she quickly changes her mind.

When we were younger it was difficult for me when we went out in public and people would look at us because of her "quirky" ways. Honestly, I felt embarrassed because of her. I looked at the way strangers would snicker at her. But my mom ignored them and all I wanted to do was confront them. I wish I could be as strong as my mom.

The hardest thing for me to deal with was when our father passed away two years ago. For weeks, maybe months she kept asking for him, picking up the phone and trying to call him. The fact that she did not understand what death is was devastating, especially not being able to share her feelings. We just used to tell her that “Daddy is up in the sky with Jesus,” and she accepted that. She stopped picking up the phone to call him. In a way I think she know he isn’t here any more.

What I love most about Valeshka is how she can say or do something silly so randomly that make us all laugh; believe me, she’s quite funny. I love how if she accidentally bumps into a door or chair, she ends up hitting it and exclaims, “Bad door!” or, “Bad chair! Naughty!"

She is a huge fan of the movie Annie. She sings all the songs and now we also know the songs, so much so that I sometimes find myself humming "The sun will come out tomorrow."

I wish that she could be accepted more in society and that people could be more compassionate towards special needs people. I wish she can be a successful children’s author and illustrator as she loves making storybooks. Trust me, her drawings are excellent.

She has come a long way. There were times in the past I wished she would be normal, act normal, behave normal, but now over time I can say I have become nearly as patient and strong as my mother and I wouldn’t trade my sister for the world. I have learnt to love her just the way she is.

Thank you to all the special brothers and sisters who unconditionally love their super-special siblings with autism! You are also superheroes!

Dr Radica Mahase is the founder/director, Support Autism T&T