Hello, I’m Rashmi Joshi, uh from New Delhi.

And I’m a mother to a 30 year-old beautiful daughter Devanshi.

Uh she uh she has Down Syndrome and she is a very independent young woman.

When Devanshi came into our lives, like every other parent I had the question, ‘Why me?’.

If a baby who has a problem…this question is sure to raise in their minds, which is very natural.

You might even feel like crying, then cry, there is no problem if you do.

But the point is, you have to start working.

Otherwise, if we keep crying and feel sorry for ourselves, nothing will get done.

Nobody is going to come and help you.

You’re the one who’ll have to go to different sources and gather information, which we did as well.

First and foremost, if there is a problem, if there is a disability, in fact, today there are different groups for different disabilities, these are parent support groups, try and connect with these.

Talk to them, talk to the people in the group, the more you talk the more information you will get.

Parents can guide other parents pretty well as per their own experiences and help them as well because they have already gone through this, so connect to them, particularly senior parents.

And I think parent support groups also have different kinds of activities, where you can go and collect information.

If you come across an issue, you can find immediate help there.

Second is, whatever the problem may be, whatever disability your child may have, we should gather all information there is to gather about it.

Most importantly, we should have all the latest information, we should know what is happening in the world regarding it.

This is because there is new research out there, many good programs and we need to stay updated on it as it might benefit our children and give them opportunities.

What we did is, we started working on it, first gathered information and then began implementing it with respect to our kid so that she can become independent.

So, for that, first get all the information about what it is.

What is Down Syndrome and what are the issues in it and how to tackle it?

It’s important to go step by step, because when there is a lot of information with us, we might get confused about what to do next.

But keep small targets.

For us, if I’m being honest, we had weekly targets.

That for one week we’ll try doing this, then add something extra to it.

Will work towards that target, and one after the other we worked towards it.

Like, for Devanshi, the first aim I had for her was she should know how to properly read and write because this is a really important skill in life.

So, then I understood a bit that Devanshi might not be able to study after a certain level but I had a target of her clearing 10th and 12th, so I made her study.

It could be possible that your ward may study higher than this, may graduate, may also study post-graduate.

So you need to assess their capabilities, accordingly fix a target and work towards it and make them study.

The more they’ll study, the more independent they’ll become.

Beyond a certain level, if you feel they’re not being able to study further, start thinking about some skill development, that going ahead in life, what work will they do?

If the education they received can help them get a job in future, that’s a very good thing, otherwise you can also think of imparting skill training that will help them get a job in the future.

It’s important to think a bit far ahead in the future as well.

Or else, after reaching a certain point, questioning what to do next can be wrong and time may simply be wasted.

Time is very precious for us then.

And the first six years of a child is very important for their development.

So then, we started thinking, ‘where do you see your child after 10 years?’ right?

So, work towards that.

So, firstly I set a goal that my daughter needs to know how to read and write, so I started working on it.

And secondly, it is very important that she should become independent, and not dependent on anyone at all.

So, we started her on life skill training which is very important, so that our child isn’t dependent on anyone and can do their own chores.

And we even had a dream that going forward, if she couldn’t go into higher studies, what job should she be given that she is independent as well as productively busy.

So then, honestly, I myself started trying.

We opened a sort of boutique and involved Devanshi in it right from the beginning, when she was in standard 1 itself.

I got her involved in counting, folding, putting clothes in the packets, separating them color-wise and size-wise, so she started to understand this gradually.

And then I used to put up stalls in exhibitions, meeting different people outside, this was also part of her training working under me.

In my 30 years of experience, firstly, this much I’ll absolutely say, that one should not feel disappointed. Be positive.

Positivity works like a magnet, it will attract positivity only and all you get back will be a positive environment where your child will be happy and will do everything right.

Another thing is you don’t need to overprotect your child.

It’s important to be strong.

Also, very important is, you need not hide anything from people.

Let your child mix with different kinds of people, take her to all the programs or the functions you’re invited to, whatever it is.

Everywhere, at anyone’s place, take the child with you, you need not hide anything.

Talk to everyone.

The more you talk, the more help you’ll get.

After this, what’s important is education.

It’s very important because this is how your child will learn how to live their life ahead, right?

So, after education, it’s important to give them some kind of a job to do next.

They should be productively busy and should also earn while they’re at it.

They should not be dependent on anybody.

After education, try to see if there can be any kind of skill training, if yes, do that, or you can also refer internships to them.

Like my daughter…my daughter was an intern as well.

She did an internship at a place to start with, she did it for 6 months and then gradually they started paying her.

The salary was low, but I didn’t pay much importance to the amount as much as I did to the fact that she was learning how to work. Meeting new people will improve her confidence.

This is very important if we want to venture out into this world.

It’s important to have that confidence, to be able to talk to people.

It is also important to know what the rights of our children are, the different facilities that the government provides them, it’s important to pay attention to these as well.

Disability certificate, UDID Card, Legal guardianship. After they turn 18, this is very important, as how to form a Trust fund so that our children don’t face any problems in the future.

If we want to make a Will, how to go about doing it, we can get all this information easily these days as they’re available on google. Many people are also working on this.

Always keep in mind that you are not alone, parent support groups are there for you.

Like our parent support group is Down Syndrome Parent Society, Delhi, chapter of Down Syndrome Federation of India.

We are always available for parents, whenever they call, whatever they ask, we have all the information.

How to make a UDID card?

How to make a disability certificate?

Which doctor is available and where?

We keep all of this information, and that too area-wise, we keep ready-information about which doctor is available and where.

So, maybe all parent groups do this.

You should ask for this information without hesitation and get it.

I want to talk about something that needs caution, at times we might get some piece of information on social media and we think, ‘yes, we can do this, our child will be cured this way’ but we need to stay very alert regarding this.

It’s not a given, that the information we get this way is always right.

And everything we hear can be applied to your kid isn’t right either.

So, once if you just talk and confirm this with a professional who we know would be right, or a senior parent, then that would be right.

This is so that you don’t go down the wrong path.

And, in our country, this happens that lots of people give different kind of suggestions, that if your child has a problem, ‘take so and so medicines or so and so powder or oil and it will be alright as we’d heard someone else was cured after this’, so at first, find out everything about that.

It’s not okay to blindly follow what anyone else did.

I’m not saying they’re wrong, but what will work for my (your) child or what is right for my (your) child, no one knows that best other than you.

And there are many who might misguide you, because disability is a condition that won’t suddenly go away because you ingested a kind of powder or applied a certain kind of oil.

The more you work with your child, the more you train them, that would be right and your child would be independent and they’ll stand on their own feet to achieve something.

And they will definitely do it.

I had complete faith in my daughter, you should also have faith in your ward, they’ll do everything.

I’d like to say this at last, and this is also very important, that you must create a circle for yourself, stay connected with everybody.

I call it the circle of love.

That is, our immediate family members, they come first in this, right?

Uncle and aunts, grandparents, they’re all important.

And our friends, they might be family friends or our close friends, stay connected with them all.

It’s very important to do this and it’s very important for our kids as well that they have a friend circle.

Even today Devanshi is connected to all her childhood friends.

It is also very important for the child to be connected with their school friends.

Another important thing is that we behave with our kids in an age-appropriate way.

For instance, now that my daughter is 30 years old, I’ll not behave with her as if she was a child, right?

They also do not like this at all.

In my daughter’s case, she absolutely dislikes this.

For instance, yesterday she applied some nail polish and I asked why, so she said it was because there was a party at her office.

I realized later that maybe she didn’t even like that I asked her.

And now, for instance, the topic of marriage is at times discussed.

All her friends are getting married, so we openly discuss her getting married.

She says as well that she wants to get married, or asks when she will get married.

So we explain to her that, ‘if you want to get married, you’ll have to go to someone else’s house to live. So you’ll need to know how to live there, or help out in the household chores like I do in this house. I work in the house as well as outside of it, so when you know how to balance this properly, we’ll think about you getting married as well!’

These kinds of questions are bound to come to mind, whoever that may be.

Not just about getting married, when she was growing up we taught her about “good touch” and “bad touch”, as it is important.

And going out with friends, going to the movies, partying, right?

All the other kids do this, right?

So they would also want to do this, right?

So we should let them do it, let them go out a bit so that they also get to know how to manage themselves around people.