I was tagged in Aditi’s Instagram page by Annie – a foodie blogger and was instantly captivated by her words. As you’ll see below, Aditi has a raw and candid way of writing – an unapologetic way of expressing herself with so much passion. It’s so refreshing to see an Asian talk so openly about Down Syndrome and the treatment in our society. Though on the whole the response hasn’t been bad, Aditi explores how they dealt and continue to deal with any toxicity – something I’m slowly learning to do through Saajan. He is my strength, he has given me that ability.
As I’ve mentioned in several posts, I feel that the Gurdwara and other places of worship could really play a pivotal role in assisting those with learning difficulties to learn basic life skills and also to give them a sense of responsibility – Kiran is an absolutely perfect example of this as Aditi explains.
Thank you Aditi for your open and honest words!
My name is Aditi and my little sister’s name is Kiran. She has Down Syndrome. Both of my parents were born and raised in Mumbai and my sister and I were both born and raised here in the US, about an hour and a half outside of Chicago, so we are first generation American. I was about 3 years old when my sister was born. My mother’s pregnancy did not feel any different with my sister than it did with me. The doctor offered my mom and parents the option to have an amniocentesis, which is the use of a hollow needle being inserted into the uterus to sample the amniotic fluid to screen for developmental abnormalities in the fetus. My parents opted out of having this done. My mom did not want to have this done and if for some reason there was something abnormal, she would be stressed out the rest of her pregnancy and felt it would effect the state of my sister in the womb. She knew either way she wanted her baby, no matter the circumstance.
After Kiran was born, the doctor suspected that she had Down Syndrome, but at that time (1991) they had to do a blood test which took a span of 2 months to be completed. My mom and dad also noticed the low muscle tone while holding her as well, and had suspected she might have Downs. Once the test came back, of course, they concluded that she did indeed have Down Syndrome. Thankfully she did not have any heart disorders or holes through her heart, which can sometimes be common amongst those with Downs. She did have a slightly imbalanced thyroid though, for which she has taken something to balance that her whole life. Other than that, super healthy.
As I mentioned above, my heritage is Indian. No one in our family, friends or community had anything negative to say to my parents regarding my sister, and I’m sure if they did, my parents would not go around someone with that type of mentality anyway. However my dad’s mother exclaimed when my sister was born, “A mad girl is born.” And used to call her ‘ghandi’ all the time. I am actually Kutch, but our family speaks in both the Kutchi and Gujarati languages. The word ‘ghandi’ in Gujarati means ‘no brain.’ So my grandma would call her that all the time. Anytime my little sister would try to hug her or go near her, she refused to hold her and as my sister got a few years older, my grandma would tell her she ‘was tired’ and wanted to go to sleep and to go away. There was an assumption on my grandma’s end that my sister was quite literally stupid and didn’t realize what she was doing.
Of course as we know, children and people with Downs are just as (if not more) smart and intuitive as us so my sister knew not to go near her. Our dad passed away when I was about 8 years old and when my sister was around 5, and after that my mom didn’t allow my dad’s mom in the house (go mom!) so my grandma moved (and stayed, thank god) back in India. We don’t speak to her for many reasons, her treatment of my mom and sister are just one of those reasons. Here’s the thing about toxicity: you need to cut it off immediately. Doesn’t matter who it is. And in my opinion and from the experiences I have been through in my life, blood is NOT thicker than water. If someone is being toxic and verbally or emotionally abusive, get them the hell out of your life. Not only was my dad’s mom verbally and emotionally abusive towards my sister, but she was towards my mother as well. The same goes for the whole ‘in-law’ thing. If you accept it as ‘normal’ or that people should just ‘deal with it,’ it will never change or get better.
Back to my sister: it gets talked about all the time that culture is a ‘reason’ for this type of negative behaviour towards someone with special needs. Well it might be a reason but it is certainly not an excuse. And this type of behaviour will only continue to persist if you ALLOW it to persist. If people and by extension, communities as a whole continue to allow this behaviour, that is basically saying that it is CONDONED. This must stop. The NOT tolerating of it has to start with the individual, as does any other type of change, because where else can we start but with ourselves?
So, after my sister was born, both of my parents said they would raise her just as they had started to raise me, so that’s exactly what they did. I used to ask my parents sometimes why my sister would get more attention than me, not because I was jealous but because I literally saw NO difference between myself and her: she was my sister and I loved her and that’s all I knew. My parents explained to me that she just needed a bit more help with things and took a bit longer to learn. At around 6 months old, a local centre for individuals with special needs (where my sister still goes today for classes and activities) came to start doing some therapy with her. They brought different toys which would help her, particularly gripping toys because as I mentioned above, people with Downs have lower muscle tone. Therapy continued for about 3 years, and then at around 3 1/2, to 4 years old Kiran started preschool. My parents noticed that she was incredibly observant, always looking around at her surroundings and analyzing things. She was quiet, curious, careful and meticulous in how she did things (and still is), playful, sassy, innocent, jovial and a very funny sense of humor that started to develop. At about 5 years old she started kindergarten and from then on, elementary, middle and high school.
In high school, there was an internship program for kids with special needs so she participated. She went to the local county city building and vacuumed as well as a local hospital and helped to fold towels. After she graduated high school, she started at YAS which stands for Young Adult Services and is basically a 4 year college program specifically for individual with special needs. Her last two years at that college included interning at Goodwill where she helped to organize and hang clothes. A few months after graduating from college, she started on a trial period at a local Laundromat, but it didn’t end up working out. My mom and some of her close friends started a Hindu Temple about 8 years ago, a few years before my sister graduated, so she started bringing my sister with her to the temple every evening and Kiran really enjoyed it. Since then, my sister goes with her every single evening! My mom gives my sister little jobs to do which she does like clockwork now: she makes sure the doors are unlocked for any visitors to come in, turns all bathroom lights on, makes sure all stalls have toilet paper and that the soap dispensers have soap. She makes sure people are always putting their shoes inside the closet before they go to pray and makes sure tables are clear and ready if anyone is having dinner there. People at my mom’s temple absolutely love her and look forward to seeing her smiling face and big hugs. Lots of people love to bring her gifts just because. I don’t know about you but I don’t have people surprising me with gifts all the time just because. Well, she is just THAT cool!
My sister has a great life, and for that I am so profoundly happy. She keeps busy every single day. She gets to take art classes three times a week at the same centre who has been working with her and our family since shortly after she was born. She participates in Special Olympics Baseball and Bowling. She is always meeting and making new friends. She loves to watch Pixar movies. She loves early 2000s TV shows (The OC and One Tree Hill in particular). She gives the best hugs. She expresses herself. She laughs. And if there’s one thing she doesn’t need, it’s anyone elses pity. She has just as much of an amazing life as anyone else. And that’s all we can ask for at the end of the day, isn’t it?
I can’t even put into words how profoundly grateful I am to have her as my sister. I wish every single human could have the experience of someone close to them having special needs. I don’t like the word ‘normal.’ Never have and never will. Who decides what is normal? Who’s to say WE are not the ‘abnormal’ ones and they aren’t ‘normal?’ I also never liked the term of someone having ‘disabilities.’ Just because someone doesn’t have the same abilities as someone else doesn’t make them less than. These terms imply separation, not inclusion. One thing I know for certain is I would NOT be the same person I am today without having her as my sister. Her name is Kiran, which means ‘ray of light’ in Sanskrit. My parents definitely named her appropriately because that’s exactly what she is: our ray of light, sunshine, constant smiles and positivity. She has taught me how to be more patient, forgiving, kind, understanding, loving, innocent and playful. Any time a situation happens that is about to test my patience, I think, “How would my sister respond?” She is so content. Always laughing to herself, listening to music, dancing without a care in the world on where she is or who is watching. She openly expresses herself without the feeling of fear or judgment from others that most of us can’t seem to shake. She is super soft spoken (unlike me – I’m the loud sister), partially because that’s her personality and partially because people who have Downs tend to have different vocal cords than us, so they often times can’t speak as loudly. She’s funny, playful, and super sassy (guess where she got that from? lol). She’s my sidekick and teacher for life. What I did to deserve such a pure soul as my sister is beyond me. I am so grateful for the lessons and laughs every single day with her.
Thank you again for including me!
Aditi
X
