Parul and Ram on parenting Dev

Parul and Ram speak candidly about raising Dev – living with Down syndrome – alongside their neurotypical daughter Neha, in this film, and how they nurtured both their children with love and understanding.
For parents who may feel overwhelmed, this film is filled with practical guidance, real-life experiences, and honest reflections from Parul and Ram.
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Having Dev has always been a blessing.
He’s, you know, by his own nature, Dev has been a very happy, very content, very routine-based child, very easy to take care of.
So, in fact, he’s non-verbal.
So, you know, after the initial efforts of trying to get him to speak or trying to help him to speak and find his voice, I realized that he’s very content, you know, the way he is and when he needs to really communicate, he can.
So, that is what is important, you know, I think.
So, I think having a special-needs child has made us focus more on, you know, real living rather than fancy notions and something your brain tells you should happen, which is all nonsense.
So, yeah, that’s, that’s what I feel.
I think adding on to what Parul has said, I think it is very difficult for me to say how would life have been because this is the only life I know for the last 20 years.
And by all accounts, particularly from my lens, it has been as good as it can be.
So, I would say having Dev in our lives gave us a sense of priority, sense of focus.
But as Parul said, more importantly, got us working together as a team.
I think also Dev teaches us to live in the moment, be content with what you have and find happiness in small things.
I think as we grow, we sometimes tend to forget it.
Dev being the eternal child, that is, he always reminds us, to be the child, find happiness in small things.
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How did you manage the dynamic of raising Dev, your eldest child with Down Syndrome, alongside Neha, your neurotypical child?
Having had Neha, who is a typical, neurotypical growing child, has been wonderful.
I’ll tell you why.
Because of Dev, now Dev, you know, kinda set a routine in our house because he eats at a particular time, does things at a particular time.
That really helped us with Neha because it was easy to tell her, okay, this is now food time, this is…and you have to sit on the feeding chair, you are not going to be running around.
If you don’t want that food, you can leave it.
In half an hour, I’ll ask you again, you’ll get the same food.
Then when she would go downstairs and, you know, she would throw a tantrum, immediately she would be brought back into the house, put in the cot.
Then in two minutes, she would scream, “Mamma, I’m okay now”.
So, things…disciplining Neha has been easy peasy because of Dev because, you know, he was there, right there to set an example.
She never realized he had special needs till we moved to England and Dev was 11 and Neha was about 6, 5 and a half, 6.
Her friends immediately knew and they came to meet him.
And at the door they said, “Oh, we heard, Parul, that you have a son, Neha’s brother, he has special needs and we want to meet him”.
So, Neha used to think till that time that there is something very special about Dev.
So, that’s why we called him a special child.
She used to be so jealous of him because of that.
And of course, you know, because everything was for him, catered for him, right?
So many things that he used to do and therapists were coming and this is happening, that is happening.
So, only then she realized what having a special needs child means.
And it kind of then gave her slightly more and then, you know, she went into, they have a carer’s center where you are a primary carer, caregiver.
For example, I am a primary caregiver for Dev and then a sibling is also part of a caregiver because even if they are not doing anything per se, it becomes part of your life.
You know, you would say, “Oh, please see if Dev has done this or can you put his iPad on charge or something like that”.
So, that gave her a very elevated status because there were lots of special things done for carers and she thought that’s a really good thing.
And lots of positive things happened to her.
I would also not scream and shout at her or raise my hand because I was, I knew, you know, I used to always weigh the scales on what is it I want from this child, you know?
And I felt I have learned a lot from both my children.
Because as a parent, it’s a first time parent, right?
You don’t know how to be a parent.
And I’ve never had preconceived notions about I am this and this is how my kids should be.
Dev taught me that, that a child cannot be, they cannot live your life for you.
You have to learn from them what is it they want and how you can enable your kids to be the best of what they are.
So, because of that attitude, it helped me raise Neha to be very mature and very responsible.
But she’s generally more independent thinking.
She can take care of herself very well.
She can travel.
She’s traveled without us.
Like from school trips, she’s gone to Europe, she goes to America.
Well-traveled, both children, both Dev and Neha are very well-traveled.
They know how to behave with, you know, lots of other people, new situations.
And because they are together, they have been together in many things, it has helped them learn from each other.
So, that security is also there.
You know, okay, so if she can do it, I can do it too.
And vice versa.
So, it has helped me a lot because she can see that there are so many things Dev cannot do that she can.
On the other hand, there are so many things that Dev can do that she cannot do, you see.
And she really admires his art.
So, yes, overall I think it’s been great.
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Could you share the story of Dev’s artistic journey?
So, I think firstly to begin with about Dev’s journey in art.
I think journey in art started by an accident because the feedback we got from school when he was eight was that he’s good at all the classes.
The only classes that he doesn’t like is art.
And in the house we have seen him playing with mud, clay, everything.
So, I think it was Parul’s strong view that it cannot be that he’s not interested in art.
So, we decided to engage an art teacher.
And it took the art teacher I would say almost three months to get Dev to sit for five minutes.
But we told the teacher we are not in any hurry, neither is Dev, so you shouldn’t be worried.
Make friends, make him comfortable, then we’ll see where it goes.
And I think after three months when Dev did his first art, I think it blew everybody away.
That there is something that this child wants to communicate and express through his art, through his colors.
And I think then, from there the journey started.
He’s 19 now, so it started when he was eight, so about 11 years.
And the first time we decided to exhibit was in 2015 through various friends.
I think we had, he had done a lot of art and it was very well appreciated.
And we felt maybe it’s time to expose, not just for himself, but also for other parents and young adults or children with special needs to be inspired that this is also possible.
So, he had held his first exhibition at India Habitat Center in 2015.
And, and since then the journey has unfolded in many ways, in many different places.
With the latest being his two paintings being exhibited at the Salarjung Museum in October.
So, he is a very accomplished artist.
We keep joking, you know, Dev has earned more money at 19 than we did together at 25, you know.
So, while there is always this feeling that people with intellectual disabilities might be handicapped, you can also look at the other side.
They can be financially independent.
They have skills and talents that can be really rewarding, not just for them, but for other people around them as well.
So, that’s the thing on his journey in art.
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Does Dev have his own bank account?
Yes, he does have a bank account.
Till he became 18, he had a minor’s account with Parul being the main account holder.
After he is 18, we have to apply for legal guardianship.
So, we are the legal, because as a major, for us to make decisions on his behalf.
So he, we became, took the legal guardianship.
So, he has a bank account in his name where he gets transacted.
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What is your perspective on the concept of inclusion?
I am a big believer in co-existence versus inclusion.
And I would like to explain the difference.
Right, sometimes inclusion can be narrowed down to being, ‘everybody is doing everything together’.
Many times it may not be in the best interest of either parties, right?
For example, Dev does not like a lot of noise.
So, it’s okay for him not to be in birthday parties because he doesn’t enjoy it.
I am a big believer and I would say we are a big believer in co-existence.
Which means everybody has the right to find their own happiness in their own way.
They should not be forced to do something else because it is the right…it is what is included, but you respect them for their individuality and really help them achieve their own individuality and their own sense of happiness.
I think that is what we have always been a big believer, is that co-existence is more important than inclusion.
You accept people for who they are.
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What emotions did you experience when Dev was born and you learned that he had Down Syndrome?
As a mother, I went through several ultrasounds. 1st question
And even though the, the gynecological team, they knew that, you know, the parameters are not being met and there might be an issue, uh they chose not to inform us.
And…But I knew.
And although I have a background in child development, which means I worked with children with special needs in my masters, I did my case study with them, everything.
However, you know, to accept that somebody, some life that has come out of you, needs uh special care, it’s like, you know, not that they are out and, oh, okay, you brought some two people into this world or one person and then you are done with it.
It’s not that.
It’s something that you have to kind of, it ties you to that person for life.
When he was born was the time we came to know that he has Down syndrome.
And that too trisomy 21, which means uh it’s complete Down syndrome.
It’s not like, there is another one called Mosaic, where there are some, they are slightly more functional, those children.
And the doctors are, you know, when they kind of, they think it’s like delivering some really bad news.
They are not very objective about it.
So anyway, when they said this, you must do genetic testing to confirm this and that.
Now, when that happened, but when I saw Dev, you know, I had it in a…
It is when they give you that injection when you are still awake.
And Dev was got out and I saw him and he was looking at, although, you know, the children do not really look, newborns, but his eyes were towards me.
I looked at him.
I just gave him a big smile.
And I said, welcome to the world, you know.
And that was our attitude.
It was like, why not us?
I…This little precious child has been born, and to us, and we are the best people in the world to take care of this child, you know?
Who else but us?
And we were so positive.
We took him like a gift.
And so did my parents.
So did Ram’s parents.
Everybody around us welcomed him.
And one of our friends, you know, he gave this advice and said that: Celebrate your child.
Make sure they are well-dressed.
Make sure they are not roaming around neglected.
Because the way you treat your child is the way the world is going to treat your child.
So I got that, you know, down pat.
And we used to celebrate his birthday every month till the first year.
Everybody used to be involved.
We used to have, throw big parties for Dev.
Dev’s birthday parties were something else till he was maybe, you know, when, till he outgrew them.
So even now that he’s grown up and we have, you know, we have a brand supporting him now in his artworks.
Those launches also happen always around his birthday.
Dev’s birthday is always a day of big celebration in our home.
And everybody comes together to do it.
So yes, we have been very positive.
And although we were told by other fellow parents that, “don’t, you, just you wait. You know, you are in this bubble, it will happen to you. You know, when he’s older, he’s going to school, he’ll have some other sibling, they’ll be in the same school, then you’ll be crying. You know, something. Then you’ll be not as happy”.
So I said, look, that’ll come when it comes to that, we’ll see, you know?
I can’t think about that right now.
Right now, I’m really happy.
But that day hasn’t come so far.
We have always been very happy around Dev.
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What advice would you give to new parents on maintaining a positive outlook and raising their child successfully?
Adding on to what Parul has said, you know, how do you kind of deal with the emotional side of it?
And I think, as she said, Dev has been a blessing in our life.
But I also want to say that, you know, you also have to set yourself and your child up for success.
And one of the key reasons is that you ought to be happy first, only then you can keep your child happy.
And the second thing that I would say, particularly for people who also have neurotypical and children with special needs, is that it is not the neurotypical’s responsibility to take care of the special needs child.
It is your duty to provide and set up the required mechanisms so that your special needs child is taken care of when you’re no longer there.
Because don’t forget, that day will come.
Your child is going to outlive you.
And you have to prepare yourself.
But also set yourself up in a practical manner.
And it is also unfair on the neurotypical child to live with this burden of having to take care.
When, if they do it out of their own volition, absolutely brilliant, because most chil…most siblings would do that.
But it’s also as a parent your responsibility to make sure your special needs child is independent of that.
So there are many people who will help you with financial planning, setting up trust, setting up independent revenue mechanisms, so your child is taken care of.
I would say take advice of a financial expert not…who has been through this.
Because there are many stages to this.
Including legal guardianship, setting up a will, setting up a trust, and making all of those necessary procedures done properly.
So that would be my advice and also recommendation, is that set yourself up for success and plan for it.
It’s not going to happen overnight.
Because one fine day, you will not be there.
And the child will not be able to cope, child or an adult at that time.
So make it planned.
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When was the Saath Parent Group formed and why are groups like this important?
So SAATH happened in 2006, around that time, and it was started by Shalini Gupta.
So maybe five, six of us initially.
And then, it was basically started to support each other through these tough times because those days we did not have a lot of information.
We did not have doctors, therapists.
We did not have society that was aware, sensitive.
And people would, you know, just walk up to you and tell you, “Hey, what’s wrong with this boy? Why don’t you try this? Why don’t you give him that medicine? Why is your child behaving like this? Take him away.”
You know, things like that.
So people were a bit shocked, by what has happened to them.
And we are talking about well-educated people from IIMs and stuff like that, who found it so difficult to accept that somebody with an intellectual disability has been born to them.
And other things, you know, husbands leaving wives, in-laws not supporting, society turning against you.
Those are very difficult times for most people.
And the child is the most important thing at that time.
So unless you come together as a community, that is not going to happen.
Because you cannot fight everything on your own.
You need that support.
And sometimes it does not come from your own family.
You need that group.
So it…it started off like that, with that intention.
And Shalini and Shailendra were wonderful.
They have a child, a girl with Down syndrome, Gayatri.
They were also learning, you know, as they went along.
Our culture is so different.
We have help.
We have so many things.
So we live-in with our joint families.
The dynamics are different.
So these care institutes, educational institutes, therapists, everybody has evolved with us.
As parents, we’ve had more say in how to get these outputs for our children.
Just to add on to what Parul has said about the Saath group, I think it’s very, very important to have a group like this that is non-judgmental.
With actual parents, with real experience of both success and failure, who can tell you for what it is.
I think it’s also important to receive critical, direct feedback, which is not sugar-coated.
Which will also help you kind of get out of the doom and gloom and really go and do something.
So in that sense, having groups like this is super important.
Currently, we are about 150 families in our group, on WhatsApp, Facebook, etc.
And any new person who comes in and we meet them, or they come to know about us, we make them join the group.
And it’s so easy.
You have a problem.
You know, there’s a family who’s lately moved from abroad.
They are finding it so difficult to find the kind of therapies and things that will work for their kids.
You know, somebody’s having fits or whatever.
Suddenly, you know, there is advice from some ten seasoned parents telling them: try this, try this, we tried this and it has really helped.