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First In India To Adopt A Child With Down Syndrome, Kavita On Highs & Lows In Parenting

  • IWB Post
  •  November 26, 2019

“When I approach a child, he inspires in me two sentiments — tenderness for what he is and respect for what he may become,” said the famous French Chemist and  Microbiologist, Louis Pasteur. And that’s how we came across the story of Veda, a wonder-child for her parents, Kavita & Himanshu.

To the world, she might be a child with Down syndrome, but to her parents, she’s an amazing child blessed with an extra-chromosome and an extraordinary perspective which makes her special as an individual. We had a heartwarming conversation with Kavita and Himanshu – the first and the only couple in India, who chose to adopt a child with Down Syndrome. 

Excerpts,

So what inspired you and your husband Himanshu to adopt a child who will need special attention? How did you come across this idea?

Kavita: To be honest, adopting a girl child was always on my mind. So before marriage, Himanshu and I came to this conclusion that we would absolutely adopt a girl-child rather than having a biological child, in future. And, we came across Down Syndrome condition when we were staying in US. It immediately clicked our minds with a question that why hadn’t we seen such children in India! Why ain’t we aware about such conditions and the special need in India? Eventually, we started reading articles, watching videos and researching about what is actually Down Syndrome and what are the causes for this condition. For days, we could think of nothing but only this condition. Therefore, we thought about not just adopting a girl-child but a child who needs special attention. And especially in the orphanages in India, such kids do not receive any early intervention. 

Veda

Veda

How has your relationship with your husband evolved after the adoption? 

Kavita: When I met Himanshu, I had this intuition that only he can fulfill for what I was dreaming of. He’s an amazing person and someone so different in terms of thought process. He’s a feminist and since the very first day, we have been sharing our responsibilities equally towards Veda. Also, I used to tell him that no matter what kind of Mother I’ll be but I think you’ll be an amazing Parent, not a father, but a Parent. In our case, he’s the mother to our child. At night, whenever Veda needed anyone of us, he would always be there with her. Also, before he leaves for his office, he makes sure that the breakfast is ready for Veda. It has been more than seven years that we are married and I believe we both have become more mature, and Himanshu is just not the best husband but the best father to our child.

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In the story shared by you, we read that your decision of adopting Veda wasn’t welcomed in your Family. Can you tell us more about the judgmental environment and isolation that the parents of children with special needs have to deal with?

Kavita: So in the initial years of our marriage, we had been asked questions about when we were planning a baby or if we had problems conceiving. But we both were so much into each other that these questions hardly mattered to us. Eventually, things got better when we moved to US. People there has always adopted kids with severe disabilities. And when we shared our thoughts with our families, they took a step back and didn’t agree with our decision. Although, I was missing those times when I had no one who could take care of me while I was taking care of my daughter, but above all of this, I had the best partner with me – my Husband. He took paternity leave, where in the meanwhile we were visiting doctors and settled Veda with us. Since Veda got her glasses within that one month, she still looked like a three-months-old baby and people around us used to comment recklessly upon Veda having spectacles. But we as a couple were strong enough to face these little issues, we actually never cared about what society says or thinks and also, we never expected any kind of help from them. So as such journey wasn’t tough for us, but for Veda. 

Since Veda is being educated at home, how well will she be able to blend with the world outside? Also, what challenges do children like Veda face out there in the world?

Kavita: Of course, I am a bit tensed and for now, all I can do is to save her from the world outside. She is a very sensitive and loving child. For her, it is really tough to understand the difference between people who are laughing with her and people who are laughing at her. She loves unconditionally. Since, she has been through a traumatic past, she’s really fragile and sensitive when it comes to emotions. She had been shamed for her glasses, and this is the reason we chose to home-school her.

I, myself, have faced bullying issues in school life, so I know what is good for my child. We want to maintain a balance. The best part is that she loves being around us since she feels secure. But yes, if she wants to go out and make friends – well, who am I to stop her! She’s a person who makes friends easily, not with the children of her age but with the adults. Her IQ & EQ are much higher than any normal kid. Since I have been a preschool teacher, I know the competition outside. I am not even a bit scared about how Veda will blend in the world, rather I am more worried about what the world will do to Veda. And I have seen people who do not make an eye-contact while talking to her. They cannot keep up with the slow pace of Veda. So yes, until she’s not comfortable, it’s okay for her to be home-schooled. For a fact, I know that with her such an amazing aura, she’ll be loved when we are not around and the world needs her, not that she needs the world.

So do you think schools should start treating every child as an individual rather than looking at their progress in a group? 

Kavita: Yes, I believe so that we need more of an inclusive education system for our kids and there are schools in India, which provide such kind of system. I came across many parents who have experienced that these days schools do not give admission to children with disabilities. Even the most inclusive schools are very expensive. So I think that these schools should be made economical for the parents. Plus, education begins at home. We need to preach what we teach our children. And looking at the present scenario of education, I am glad that my child is not going to such schools. I have worked as a preschool teacher, have seen things which were not right.

Hence, we as parents should learn to accept our children the way they are. Fortunately, there’s a huge community of parents for Down syndrome across the country, and they were so welcoming and caring. So yes, I feel good.

There are many stigmas attached to Down Syndrome. Can you please shatter some of them while telling us about Veda’s little victories and achievements?

Kavita: I would like to be very firm with my statement, a child will become what parents will work with them to be. Veda has missed 15 months of early intervention. When we met her for the first time, she had a terrible eye-sight, her eyes were squinted. I was shocked to see that she was suffering from severe dermatitis. She was severely anemic and she didn’t have a single tooth at the age of 15 months. The worst part was that nobody had taken care of her in the Orphanage. When we brought her home, we did not think about what her past was like, rather we accepted her as our child. For the first six months, we did not visit anyone, we cocooned her – we shared with her the attachment parenting. And when she was two and a half years old, people used to tell us that these kids couldn’t do anything on their own. But Veda was an independent child who could eat on her own with a fork and spoon, just like any other typical kid. Now that she’s three years old, she can count, she can speak well. Above all of these, she can empathize with the pain of others. The key reason behind all of these is that we never thought that she wouldn’t be able to do anything. It’s very easy to create a stigma out of this because parents often treat this condition as a disability.

You have been working for the cause of adoption. We wish to thank you for your dedication towards the cause.

Thank you! How many parents have actually talked about Down syndrome openly on social media or anywhere? The answer will be not many. But we are doing it, we are putting up videos, activities which she does, and I often write about Adoption. But people around me have tried to shut me down, commenting that you should stop writing about adoption. I have received calls from the media asking me about why am I doing this! My main purpose is to spread awareness amongst the future generation, and people who want to adopt or having kids which such condition.

Secondly, nobody has a role model to look upon – and now that they see our videos, they feel that their child can do this too. Veda started walking at three due to severe physical issues and I know a child who lives on the outskirts of Aurangabad, in Maharashtra, he has been eating on his own since he was one. The stigma sustains in our society because people don’t talk about this condition. And since our society fails to provide jobs and an education system for such children, this stigma shall continue for a longer time period. But hopefully, our generation has started talking about this, I feel maybe in 10 years we’ll have a better society.

Veda

How does Indian Adoption system fail those ready to adopt a child today? What amendments are urgent?

Kavita: To be honest, we never faced any issues in adoption. Although, I feel that Indian government needs to take some steps to create awareness regarding adoption in India. And now, since past two years CARA has started sharing videos, also advertisements have been created which are often played in Cinema halls. But somehow, the lack of awareness amongst the people can be seen. Whenever I share my articles on adoption, people often ask me what is CARA and how can they register for adoption. All the process for adoption is online and of course, the waiting period is quite long. Well, we have 30 million children who are abandoned in our country, out of which only 1000-10,000 children are in orphanages. Some of these kids are trapped in human-trafficking or begging in the streets. But are we doing anything for this issue? There’s a complaint phone number-1098, where we can inform about children begging on the streets. So how can we blame the government for this? Being a responsible citizen, we need to inform the concerned authority. Rather than sympathising with the whole scenario and failing the government, we as citizens need to take action.

Also, when it comes to adopting a child, Indian parents want to adopt a healthy child and they don’t want any issues. But if a child is in adoption pool or panel, how can you expect them to be healthy? They are coming from a certain background where they might have been abused. And since there are so many parents who want to adopt a healthy child, hence they have to wait for two years at least. Recently, there was an article published which mentions that there is a decline in the availability of healthy children. There are thousands of kids in disability section, but people don’t even think of them. But fortunately, in our case the adoption got finalised in 45 days. In the case of a healthy child, the parents get a referral but you won’t believe that these parents reject such referrals on the basis of color, height, less hair growth, etc. And upon all of this, we still choose to blame the government. We as a society are doomed. Sometimes, I wonder if parents want to adopt a perfectly healthy child, then are they even perfect for parenting? Imagine, if kids were given a choice to choose their parents, I am sure they won’t even think of choosing such judgmental parents. So Adoption is facing issues because of citizens and lack of resources.

Kavita with Veda

Kavita with Veda

Parenting is all about the ups and downs. Would you love to open up about your low phases as a parent to a child with special needs? 

Kavita: The biggest phase for us was unlearning those things which we had learned for years. When Veda came into our lives, I knew that she would have delayed milestones, we were ready to accept it. She has achieved her milestones very quickly, like drinking water with the straw which is quite a difficult task for kids with such conditions. But she could not walk for three years, and that was a time when I felt low. We are going to therapies regularly – I’ve seen her struggling. I thought I have failed as a parent. I could not see anything apart from our pain. But when I looked at her, I felt like she’s saying to me that please don’t give up. We regularly went to parks, for all 365 days for crawling, making her walk and other sensory stimulation exercises. She took her first steps in the month of January, on her third birthday and since that day, I made a point, I am not giving up on my child. There were times when we had sleepless nights. Times when she skipped her heartbeat, which became a matter of concern for us. After her adoption, we found out that she gets emotional triggers. So whenever one is going for an adoption, one should be prepared mentally more than physically. In our case, our child cannot tell what she has been through, but we feel her pain. When she came home, she was scared of women, and she easily trusts male. We had to shift our mode to a special-needs parent from an adoption parent.

07

How does Veda help you in discovering your own bigger mission for life?

Kavita: Veda has changed my perspective towards life. Often, my family, my friends, they say that I have changed. Yes, I have or maybe, this part of mine had always existed in me. When I became a mother at 27, I felt like what have I done with my other 26 years! Back then, I was a travel and food blogger, I was not comfortable in my skin and had issues. But she gave me a vision, which allows me to express my gratitude towards what I have been blessed with. I feel, I see the world in Veda’s glasses now. Here, small details matter the most. I feel like my life is on a slow pace, just like a snail. When I look at her, she’s the happiest person even when she listens to her favourite song or she finds a piece of bubble wrap. And I am glad that unlike other parents, I don’t have this tension of sending her to school or stressing upon her progress. Whenever people ask about how I am making her learn things, I say that it’s not her who’s learning, I am the one who’s learning from her and unlearning things which I was taught. I am learning everything with her, from collecting leaves, counting numbers and how to paint. I guess I’m the student and Veda is my teacher.

How expensive is it to be a parent of a child with special needs in India? Is the medical system supportive enough?

Kavita: I won’t say that the family can be financially stable if they have kids with special needs, biologically. There were some therapies for Veda, which were expensive. Hence, all her Speech and Occupational therapies are being performed at home. We do take her for muscle therapies. Also, I believe that children with Down Syndrome can do wonders only if their parents are equally involved in all their therapies.

But yes, the medical system in India is not supportive enough. Since the very first day, when a child is born, Doctors here instead of congratulating a parent, they will give a list of issues, your child might suffer from. Though Down syndrome is still manageable, but in some cases, people do need medical facilities for physical deformities. But the medical system fails to help. Even the Physiotherapy centres are not fully equipped. And those, which have all the facilities, are expensive.

In India, Parents are not really comfortable in accepting or sharing the fact that their child has special needs or attention, what message do you have for such parents?

Kavita: I would just say one thing to them – just go with your child! Also, spread awareness and educate other people around. Every parent should start talking about their stories on Social Media. Share your experiences and struggles. Definitely, people will judge but then that’s what people are meant to do! Just be there with your kid. There have been times when we visited a mall or a park, people around have recklessly commented that such a tiny kid, with such huge spectacles! But as parents, we have always educated them. Take your kids out and stop hiding them from the society. The society has to see the world through the eyes of these kids and they are not meant to be home-bound. Please don’t put your adult brain in your child. Your child is first. Society is secondary. That’s all.

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