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Harini’s Story: The Lessons Learnt While Raising a Child with down Syndrome

“I knew I had to do something for myself. Yes, I had Bhargav to look after, but I knew that I shouldn’t make that the only thing I did in my life.”

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Meet Harini Sivakumar, mother to two boys and an entrepreneur based in Gurugram. A typical day in the life of this lady begins at 6 am when she goes out for her daily cycling fix.

At 7:30 am, she gets back home and gets her boys ready for school, after which she completes her emails and pending work.

From 1 pm, it’s again taking care of the children – making lunch, afternoon naps and park – play time till 6 pm. In between, she snatches some time to finish some more work. In the evening, its homework, dinnertime, and bedtime by 9 pm.

This seems like a routine you and I would follow with our kids, right?

The only difference here is that Harini’s older son, Bhargav, has Down Syndrome. This is the inspiring story of one mother and her son.

Unconditional love

Harini Sivakumar was born and raised in Chennai. After completing her MBA in retail management, she worked for a while before getting married in 2009. She moved to Hyderabad post marriage, and within a year, Bhargav was born.

Speaking to The Better India, she says, “I was 22 when Bhargav was born. I vividly remember the doctor giving us the news that our child has Down Syndrome. I had no idea what it even meant, and I lay there on the hospital bed googling it to try and understand what it is. Would he walk, would he talk, would he look different? I had so many questions.”

Harini, like most parents, went through various phases before finally coming to terms and accepting her child.

Just because you don’t look like the other crayons in the box, does not mean you still can’t make the most beautiful picture.

“I was in a state of shock and denial, in the beginning, telling myself that this could not happen to me. That gave way to trying to accept the situation and empowering myself with knowledge about what Down Syndrome meant, and finally, after a long struggle, acceptance came. Post acceptance, it was all about the need and desire to make the environment around Bhargav as conducive as possible.”

It was also a difficult time for Harini because she knew that she would not be able to go back and work full-time in the corporate sector.

“I knew it was next to impossible ever to go back and work. I just had to be there for Bhargav, and take care of him.”

Harini moved to Bengaluru where she enrolled for a Master’s Degree in Special And Inclusive Education. “My primary motive in doing this was to help Bhargav. I felt that there were only limited resources that were available for nurturing children with Down Syndrome. More often than not, it is the lack of understanding.” she said. Harini wanted to equip herself to be able to take care of her son.

“In doing the course, I realised how unaware people are about Down Syndrome. While some of them had heard about it, no one could say for certain what the issue was, and how to address them. Most schools proclaim to have the resources to address special children, but mostly they would just have a separate section in which club all the children with different disabilities together – ADHD, Autism, Down Syndrome amongst many others. That I realised was a huge mistake,” says Harini.

“There is no one size fits all – each of the issues are different and needs different means to address them.”

Down Syndrome is NOT an illness. My extra chromosome makes me extra cute.

Children with Down syndrome are sociable, and they like meeting people and spending time with other children. Children with Autism spectrum disorders, on the other hand, may or may not like being in the company of many others. Clubbing them all together means doing them all a huge disservice.

Inclusivity doesn’t mean putting children with special needs together in one class. The idea is to let them express their emotions and feelings by being among other ‘normal’ children.

Harini with Bhargav

Having to give up a corporate job where she was drawing a salary of almost a few lakhs was difficult for Harini.

“I knew I had to do something for myself. Yes, I had Bhargav to look after, but I knew that I shouldn’t make that the only thing I did in my life. What I couldn’t cope with was the fact that I wouldn’t ever be able to do anything for myself. I didn’t want to blame Bhargav for my not being able to do anything,” she says.

That was when the entrepreneurial bug caught Harini. She started her venture called Soap Works.

“That was the time when many people were shifting to using natural products, organic ingredients etc. I felt that was the right time to launch my soaps as I saw a huge potential for it.”

Wearing the entrepreneur hat

The death of her mother in 2014 came as a huge blow for Harini. “She was the healthiest person I knew. She was only 50 when she passed away from Cancer. She would walk regularly, ate healthy and yet cancer struck. I remember shouting in frustration at the doctor asking him how my mother could get cancer.”

While the doctor didn’t say anything at that time, some time later he told Harini that while we may be leading healthy lifestyles, our environment is becoming so toxic that we are becoming increasingly susceptible to diseases like cancer.

“Soon after Bhargav was born, the one question that was often asked of me was if I ever visited Kalpakkam anytime during my pregnancy.”

Let’s be truly inclusive

“This not only surprised me but also left me thinking about the kind of environment we are living in,” she says.

Kalpakkam is where the Indira Gandhi Centre for Atomic Research is located and also co-habits a nuclear power plant.

That one question remained with Harini even years after Bhargav’s birth. She started making small changes around the house.

She actively started looking for vegetables and fruits that are organically grown. While the changes were small, she feels that they will help her and her children in the long run.

“March 21st every year is celebrated as Down Syndrome awareness day, and that is when I decided to put up a video of Bhargav in a bid to educate people about it. I started doing this in the year 2015. My biggest achievement in making the videos is that I got people talking about it and changed the perception of many,” she says.

Harini says it is very important for parents to remove worry from their lives. There will always be a reason to worry – if your child isn’t crawling when he’s supposed to, if your child doesn’t speak when he is supposed to, and even if you feel your child is underperforming in class.

She urges all parents to try and enjoy the small moments and not worry about everything. Through her journey with Bhargav, the biggest lesson that Harini has learnt is to let the children be. They will all achieve their milestones, some early on in life and some maybe later, but eventually they all get there.

Speaking about the biggest life lesson she has learnt from Bhargav, she says, “Bhargav taught me to truly enjoy and appreciate my life. He taught me that going slow is good.”

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