Well I was told to write a few words on my little sister Khadija on the occasion of World’s Downs Syndrome Day and here is what I came up with.

Link to the article on Times Wellness.

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“Well it was the December 14, 1987 and I was about two years when Khadija was born. My mother did share with me what she went through when she conceived her. My mother used to go to all kinds of sonography tests but probably her doctor didn’t inform her about the disorder, probably because technology wasn’t that developed then.

I clearly remember my mother saying that after she had delivered and the doctors told my dad about it, he didn’t break it out to her immediately. He gave her time to settle down. My dad could better understand what Down’s Syndrome was all about – simple reason being that his side of the family had a child (his first cousin is a Downs child).

When the doctors and dad showed Khadija to my mother (and at that point just after birth, her skin tone was very dark due to some reason), she was somewhere disappointed. She just couldn’t express her anger towards God at that point of time. As I was the first kid after eighteen years of birth and she was the next one, she did have some expectations.

 

Time moved on and my parents realized that they need to live with this and make the best out of it. In a year – somehow she became very fair. The complete point of finding acceptance in one’s family and friends was the reason they were initially scared of disclosing about a Downs kid, but with the immense support from all, guess they were really proud of her.

Last what I remember when I was small was that I loved her a lot to ever try and differentiate her as a “Special Kid”. I have faint memories of picnics where my parents would say that I can go enjoy with other kids and I would say that I wouldn’t want to without her. I eventually lost many friends because they either were uncomfortable having her around and guess they’re weren’t mature enough.”

 

Education

“My mother was a teacher for the junior classes and initially she had kept a help at home to take care of Khadija, but due to some physical abuse, they decided to take her to school. My mom taught at Carmel School, Kuwait and this was a convent. The nuns at the school welcomed her with open arms and put her in the kindergarten classes. She didn’t move to the next class but she did start interacting with normal people and received a lot of love – one of the most important factors that has made her the way she is and what she is today.

After a few years – about 1995 – my mother found out that there was this institute in the US that would help my mom learn speech therapy and special education for Down’s kids and my parents decided that Mom and Khadija should go and stay there for a few years. Initially I didn’t like the idea of them going away, but I thought that it was for the best.

At that point – my Dad was diagnosed with cancer and they dropped the idea. She found a good school in Kuwait (which was really expensive and we were going through a tough patch at that time) yet they decided to keep her there for a while to see if something improved – and today if I see why my parents did this is because they somewhere believed that there was something missing in her which they were trying to fill – they somewhere expected her to become a normal kid.”

 

Health

“Her health has always been good. Her physical stats have always matched that of a 10 year old kid, but she has always been healthy. My parents always used homeopathic medicine as she loved the sweet taste. Such kids do gain a lot of weight and have to be controlled.

Sometimes seeing such kids – we usually do not ask them to do the daily chores, which is a wrong thing as they get accustomed to sitting in one place. My mom tried to make her do a lot of running about just so that she would be healthy. I have hardly seen her ill – but its usually fever, diarrhoea, headaches and cold. Also a few years back, my mother decided to stop her periods, hence, they did a hysterectomy.”

 

Life with her

“I myself have taken care of her alone several times but it has never been at a stretch as I’ve always had my parents around and now my aunt is around. But yes it is difficult at times. She has gone through a lot of behavioural changes after I put her in a boarding school here in Pune after my parents passed away.

She was very close to my Dad and when he was on his death bed, she slowly started to distance herself from him. She somehow understood something was wrong and I always saw her consoling dad and spending time laughing and making him laugh rather than crying.

I still remember this particular incident – when he passed away in the morning and I was giving my first year exam and was called back – I went home and saw her she was in the balcony and she was crying faintly. When I moved her she immediately wiped her tears and gave me a smile. I said to myself that “How can a child who we say is mentally slow have such an emotion and understand what death is all about” – but she did and the same happened during my mother’s death – she understood and supported me.

Life is not that easy with Downs’s kids due to their behaviour. Sometimes we need immense patience to handle these kids and the pressures the world has to offer. Your daily routine changes – the people you hang out with change – the things you do change and there is a lot of sacrifice that needs to be put in to move on with such kids – but at the end of the day what you need is Love – you need to love them from your heart and all the things that you leave behind will sum up to nothing.”

 

Behaviour

“She has always been moody, stubborn and sly in getting her point across (I shouldn’t say this, but its a point worth noting – these kids are very smart in faking emotions to get their work done or point across as they know we immediately melt down. That somehow taught me to be a little strict with her). She is super stubborn – simple reason – she doesn’t like being told what to do but likes being asked and requested and pleaded. If you say please – she might really think about listening but if you insist – you’re history!

Well for me – I intend to get her home as soon as possible. Once probably I’m settled, I plan to have a house help 24×7 for her and have her home and keep her back at her old school Prayatna, which is an awesome place as they teach the right things these kids need.”

 

End message

“My ending note – to all parents or guardians of such kids – please love these kids. Its love that these kids need. If you treat them specially (negatively), then they will never be happy and in-turn you will never be happy. If you treat them as your own kid, then they are all yours. I spoke about the love that she got at Carmel School in Kuwait – well its this love and acceptance due to which she has developed self-confidence.

These kids are not very approachable and they for sure are not that friendly at first. But its this love and acceptance that made her into super approachable – and this is not a hyperbole – but I do have friends who like to spend more time with her than me. She loves socialising and I owe the school for involving her in all dance programs, skits, games and extra curricular activities and the students eventually used to give up in the competition just to let her win to help her build her confidence.”

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