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Hi, my name is George Abraham and welcome to Eyeway Conversations. My guest today is Ruchi Patil, mother of Arijit Patil, who is visually impaired. Welcome Ruchi to this conversation.
Thank you so much. It's an honor to be chatting with you here today.
So, Ruchi, when and how did you actually discover that ArIjit was blind?
So Arijit was born in the sixth month of my pregnancy. So there were a lot of issues that the hospital and the doctors, the pediatricians were screening him for, vision being one of them. So around the time that he was, I think one month old which is like minus two corrected age. That's the time they found that the retina wasn't growing as it was expected to do and they started with some treatments over here. So that is how, you know the process started. Losing vision was yet another thing that you know, was spread out across two years and multiple treatments. And then when Bombay had exhausted its resources, we were asked to go to Chennai, Shankara Nethralaya, with the best doctors there trying their bit. And after going through four surgeries you know, he started wearing glasses, he loved playing with color. That's how it started, he loved playing with color and those brights of toys and things like that and slowly he started losing vision. By the time he was two and a half, he had lost his vision.
What would you actually call this eye condition? Is it retinopathy of prematurity or something like that or what is it called?
Yes yes Sir, it's retinopathy of prematurity.
So when you as a young mother and your husband, when you kind of realized that your son was going to be blind and had to live his life as a blind person, what was your initial reaction?
We were in total shock, I think overwhelmed, panicked. There are lots of emotions flooding through us, sorrow, guilt, fear, anger, I think it was not just one thing. I think the most important one was guilt. I mean, both of us felt that you know we couldn't give our child something as basic as vision and I more so because he was born premature. So I kept thinking that if I had done something differently, he may not have been born premature, and he may not have had to lose his vision. So yeah, those were the things that we really went through, we struggled through over time.
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You know, it is said that the first 3-4 years of a child's growth is critical to what he becomes in life. So it appears that you guys had a very quick turnaround in terms of emotions, and what actually got you going to look at Arijit as your child and a child who needed your attention and nurture?
So I think the guilt actually worked both ways. It was like I mean, if I have deprived him of his vision, I'm going to give him everything else in this world. So you know, there were small little things, adjustments that I had to make in my mind that you know, I would see small kids you know, looking around and you know, just seeing people, sometimes smiling and I would say oh my god, I mean my child is missing out on the stimulation, what do I do? So I started playing, in fact I had started paying prayer music in ICU itself. And I flooded his life with music, sounds and everything that was possible. I mean, we had around 5000 CDs by the time he was six, I guess. So you know, we just tried to bombard him. So we said that the world is bombarding the sighted child, why should my child be deprived so that was one. The second thing was I think we had a beautiful support system. So Arijit's pediatrician, Dr. Koop Chandani deserves credit here for putting us with developmental pediatrician Dr. Vibha Krishnamurthy who kept looking at Arijit and saying that, you know, now it's time for physiotherapy. Now it's time for you know, he may not walk if you don't do it, you know because children learn by seeing. So in visually impaired kids what happens is that in the absence of vision, they may not learn. And so Vibha was there constantly and I also you know, being an very voracious reader, I knew that the first six years of my child's life are very important. I couldn't just you know sit back and cry, I had to reselect what remained so that came around the time Arijit was two and a half. And when he started walking, in fact my first meeting, I was told, you know, it was a very guarded response by the developmental pediatrician who says that we are not very sure of his brain development. We are not very sure of his hearing. So with the multiples swords on our head, we said we have no power what is not, but we have to make efforts of what we can. So I myself, with him being premature. And with the kind of stringent protocol of very few people touching him, this fellow wouldn't let anybody do anything with him. So I learned physiotherapy, I started doing that. He luckily walked you know with God's grace, started walking at the record age, I was told, then are 15 months, and our journeys to Chennai continued. And every time we would come back, we would take the next appointment, plan for it, go there. Again, get him evaluated, what next, what next. I mean for hours, I would be researching what can be done. Until one day, we were told that we are not sure that he can talk. And we were asked to give him sign language. And they said that you know, the more I delay his sign language, I'm depriving him of communicating. So that was a time that I decided that there is something that has to shift within me, I cannot be fighting over something today, which I'm not even sure of and lose what I have. I need to reselect what is and that's when I said that you know, I need to close this Chennai chapter, I need to stop thinking about it right now and focus on my child's development. So that's when I began intense speech therapy. You know, so when they asked me to give him sign language, I said that give me three months. If he doesn't speak in three months, I get back with sign language. So I just had a window of three months and I researchED whatever was available, tried various things, but thing with Arijit is I think I had, you know whatever I did with him, he'll give results. So I had a little recorder, and I had language baskets, and cognition baskets and things like that. And when I went to see the developmental pediatrician three months later, she says he's fine please go on. I don't think he need sign language anymore. He talks regularly, he speaks 5000 words, I think in three months or something three languages and he's doing well.
Right. So obviously, by 5-6 it was time for Arjit to go to school. And so what was the checklist you had for yourself to have him ready for school?
So I think I forgot to mention, by the time he was two and a half, we started going to Sheila Ma'am, who was this early interventionist and she says - we thought it's going to be very convenient to go take go to a blind school, because they would have the tools, the techniques, the know how, the acceptance, everything- but she said that no, that wouldn't be a very stimulating environment for Arijit who happens to be a very bright kid. And that's when we decided that okay, the mental decision that it has to be a regular school was made. And I think we have been very lucky, Arijit comes with a great good fortune of being supported by amazing people and schools. So this is his third school now. The first school was ot India inwardly. The second was Beacon High so that was just two years, his preschool years. When it was time to move on. Again, we made some five applications. Three of them didn't respond, two of them did, but when he went to his school Beacon High, his principal, Mr. Jamali very happily told us that you know what he looks like a very interesting kid. I haven't done this before, but I'm willing to give it a try. And the 11 years that Arijit was with them till grade 10 have been the most beautiful years of our lives because I was very sure that he goes to a school that I don't have to fight for him to go, that he's welcomed with open arms. So this was a school that celebrated him that gave him every opportunity. I mean, whether it was sports day, whether it was annual day, this fellows play the piano, music, anything you name it and Arijit was there, whether he had to give a speech, whatever I mean, they just gave him every opportunity and made him what he is. I owe a lot to the school. The third school that he is presently in is Bombay International School, again a very inclusive school, just that the COVID situation has made the situation very very difficult in terms of socializing and things like that but he hasn't lost a day's work. The teachers are very approachable, they are always you know, very forthcoming with any kind of support that he may need. So we have been lucky. But yeah, I think I need to come back to the point of preparing him for school so that is one area which really needs work. And so I was warmed for around a year, I almost try and run a small scale industry making books because I realized nowhere in the world for kids below six, even American AFB had books for kids above six. So being a voracious reader I said that you know, if I have it why doesn't he, so we had a little you know two teachers helping me with making those tactile books. And then we started off with recordings and activity charts and parallel stuff. I think he played the piano and taught at the age of two and a half, and he learned the computer at the age of four. So you know, I always thought, how could I make it equitable, so if kids are scribbling, why wouldn't Arijit do, so it was so sweet in fact, this is something I was telling him a few days ago, he would just scribble ASDF, WERPY whatever, and then make Josh's read it. So Josh would read whatever. And he would laugh, I said, what happened, I see how Josh is reading, you know, that's how he took to the computer. So there was a lot of work that is needed a lot of teaching aids to be made. But luckily, everything fell in place.
So all this happened before he went to the first school?
So I started this journey then. And I think, if this is something that will I mean, you know, my input in his life has been gradually reducing to the extent that this now in his grade 12, I'm just his maths scribe and it didn't happen over a year, this was something that was ongoing all the time. And you know, integration and inclusion are very very different. So first and foremost, I wanted to achieve integration, then I wanted to make sure that he is included. And we actually done a social skills curriculum at school with the Principal's permission, which he was always very happy to do. So you know whether he's a part of the yoga camp, everything that was happening in school, art and craft, as he have 3D diagrams, which he can colour. So everything that was happening, he have something to do. So this was an effort which went on for a while. But yeah, not just before school, it started off then a big sport happened then and it continued.
You know, I remember when I was growing up you know, in fact a lot of what you say kind of resonates with me because in a different context, because I grew up in a different era. But you know, the engagement with the school that my parents had they would regularly visit the school, not on a daily basis, but maybe on a fortnightly or monthly basis, they would interact with the teachers because obviously, having a visually impaired child in class was a novelty for most teachers. So what was the kind of engagement that you needed to have with the teachers that engaged with Arijit?
So basically with India, I think we don't have these TVIs, as they're called in the US. So this gave me a very open platform. I never came back with no for an answer. Whatever I asked for Mrs. Giamatti always made sure that she had made the way. So you know, whether it was miss can I do this, of course, let me call the teacher. So it was I mean I had a playing field where I could actually you know, do whatever I wanted to, Ma'am, can I not to do the diagrams this way, can I do it this way, of course you can, what else can you suggest. So I think they have a very very open and the teachers and I think it was a culture of inclusion. So I think it was easy, but yeah my level of engagement was high and slowly started reducing. So I sent a special educator for his initial years, started off with full time and we started weaning off only in areas where he needed support, the special educator would go and I think by the time he was in grade six, the special educator was out, except for you know, any kind of diagram questions or whatever. Or if there were any notes that the teacher wanted, she would just type it and give it to him, anything that was written on the board, she would just provide to him. But by the time he was in grade six, that had just come off completely.
Were there other children with disability also in the school or Arijit was the only one?
Yes, there was. So this is a school which you know, their motto is something which they have lived, "we dare to care" was the school's motto. So there was another Down Syndrome kid, they were multiple kids with disabilities. And we never got to know who was who was what because I think they never made a big deal about it. But these were kids in and around Arijit's class, which I know, there were two kids with autism, there were kids with learning difficulties. So there were multiple kids with multiple issues. I remember seeing a child on a wheelchair. So yes, there were kids like this. And there's one incident that I recall at this moment. So there was this girl I used to go to you know, I would be around school for the first year or so wouldn't come back home just in case Arijit needed something, the teachers needed something. So I was just fetching him and there was a Down Syndrome girl who was coming down, and this little child he goes to the teacher and he says miss you know what this fellow has said this to this girl. So I knew that this is a culture which does not encourage not being kind to a special needs child, that always stayed with me.
So I think you didn't pay the inclusivity of the school stems because of an ideology or a mission that the school had set out or was it entirely to do with the Principal?
So this was a school set up by the Principal only. In fact, I think they made sure that the culture seeped through the teachers, the children, the parents, I think they made sure that they lift that culture.
Yeah, a lot of schools do say that other parents do object to having children with disability in the class because the progress of the students generally gets delayed because of children with disability may be slowing them down. So that did not happen this school appears.
Not at all, not at all, in fact you know, for some quizzes, in some classes, Arijit was the one who was chosen and said that you know, people would make sure that Arijit's strengths are shown, so that people could respect him equally. So kids would say no no, we want Arijit in our team because this fellow's an encyclopedia, he read so much, our team will win. So I think they made sure that his strengths also get highlighted you know, this is a child who can do so many things. What you say, I do see that you know, there were parents who thought that the children are not getting very stimulated and they would not send their kids and you know, things like that. But there was always the other group you know, there was this other kind of parents and the other kind of kids that we focused on.
This brings me to another thought, how easy or difficult was it for Arijit to make friends? You know, friends would mean people with whom, not only people to whose houses we would go to, but they would come to your place or maybe go out for outings and so on. Was that something that happened often with Arijit?
So I think disability does pose that issue and one should not be in denial. But Arijit has been lucky, a I said COVID has made the school, socialization with this school a little difficult. But the previous school, we had kids very often over and you know, they were kids over here for sleepovers, Arijit would be invited. And you know, I think there was a level of inclusion. And there were times and let me just come to that also, there were times that I felt that he was not being you know, is not here, Arijit is not here but luckily Arijit's nature is such he would say mom I don't really, it doesn't bother me. And that's when I realized that I should not cloud his mind with my perceptions. He is very happy with his setup and he is not complaining and why am I bringing it to you know, his notice something that I'm seeing and he's choosing to overlook, why am I bringing it into his you know field of thought. So that way we were lucky we have lovely friends, you know, he's still in touch with and I think post COVID they're already planning a holiday and things like that so we have been lucky that way.
I'm just kind of dying to ask you this question. Has Arijit come back to you with his frustrations because very often you know, being a visually impaired person myself, I find that I have to work extra hard, put in those extra hours to actually keep pace. And it could be very frustrating and sometimes even depressing. Have you had any experience where Arijit kind of said, why the hell is this happening to me, you know that kind of thing?
So I remember just a couple of episodes of that kind. One of them was he comes back home and math was something that I would teach him at home, he would do whatever he could do in school because you know, he had to do on lab tech, and the teacher may not be equipped, he would have to you know, the visual questions would have to be explained to him. So there's this day, I think grade 7 or 8, he comes back home and he says that, you know Sir was drawing quadrilateral on the board, and I couldn't understand and I felt so bad and I felt so shameful, why am I not understanding, that was one episode. And the other episode I remember was Arijit, I think has taken working pretty hard in his stride, he is slightly harsh on himself. I don't know where he you know, no no, I must do it, no I must get this, no I should get it, let me just try. So except for a couple of episodes, he's generally been very easy with, you know things and putting in that effort. There have been times where he's really worked on advocacy also. So when he was asked to in ICSE, when he was told that please don't do math and science, because they're very visual subjects and why don't you take eco and commerce, so ICSE gives this option, this child and even I wasn't sure what he wants to do. So I said, you know beta, why don't you do this, this is what people are recommending. He put his foot down, he says, no I wanted to maths and science, then I thought that you know, when I wanted to do engineering, I didn't have to explain to anybody, why is my child having to explain to anybody about it. And that's how he did his math and science. The second point of advocacy came when he was asked to use a writer. So he comes to me and very frustrated, very angry, very agitated and he says, tell me, what is my problem so I said, what happened, he says, do I have a problem like dyslexia or something. So I said, why what happened, so he says that people with dyslexia are the ones who need scribes, I can, I am not typing on my computer, what is the problem, why can't I write it myself. That's when we advocated for the scribe. So these two three things have you know been the major things for us.
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Bringing up Arijit would have taken a lot of your time. So did you have a career alongside being a mother or were you a full time mother?
I had a career before I became a mother then I think that Arijit became my favorite project. So I have worked with Tata electric companies, the R&D department, I have worked for a good 7 years, worked on research projects with Dr. Abdul Kalam and enjoyed my work a lot. And I gave it up before Arijit was born yeah.
What is it that you might like to tell other mothers or other parents who are kind of listening to this podcast? What is the kind of message that you would like to give them based on your experience?
Your child is a child first, his disability and ability later, please see him as a child first, enjoy him.
Right.
The second thing that I would want to say, which I always say is always see the things he can do and not the things that he can't do. Build it up, stack it up. It all adds up, you know small little things. And the third thing is keep your expectations real and high. I mean, don't be a high pressure parent of course. But just understand that is in Arijit's case, his disability is his vision, not his intelligence, not his perseverance. So I will not tell him that you know, you can take it easy and work just three hours a day, no, I will tell him that you know, you need to put in many hours, you need to build in sincerity, you need to have integrity, you need to have accountability. These expectations are set, right and then whatever you get, you are my hero. So celebrate your child is the next thing that I really want to say. Enjoy him, celebrate him, you know and the last thing is a lot of people give a lot of reactions, because they are not aware, you know they don't know how to you know, I remember that when we would go to restaurants and Arijit was small, people would look at us as if it come from Mars, or people would look at us with so much of pity. And we would say, excuse me, we don't need your pity. We need equal acceptance, we need engagement, like I come and say hi to your child, that you're at the table and do that as well. You know, so I think these are the things that I don't get defeated by these kinds of attitudes. Just focus on your child, focus on your dreams, build it up together, that is what I would like to tell them.
I would like a lot of our listeners to know that, as you said, he is a child, he is your son or daughter. And, you know they need to be enjoyed, they need to be nurtured and they need to be given the opportunity of, you know, moving towards their potential. You know the tragedy is that there are, I have met a number of visually impaired people who have actually been deserted by their parents and family when they were young, you know and it is difficult to kind of grasp that kind of a thinking. But that is a reality and I do hope that people who listen to this podcast would look at children with disability also as an opportunity to love and an opportunity to mold a person who actually grows up to become a contributor to the country and the society. So thank you so much, Ruchi for talking to me and wish you all the best.
Thank you so much, Sir, it's been a privilege. I would want to close it with something that you know I had thought I'm going to talk about and just slipped my mind. My early interventionist, Sheila Singha, I remember when he was two and a half and I was fretting one day that you know, Kay Sera Sera how am I going to do this, how am I going to manage this and she came and told me that Ruchi, I see a George Abraham in him, so she sold me a dream and I just wish that all parents are sold a dream that they can live by.
My God, I'm flattered here but yes, I think it's very very good to have a dream and it is the dream that actually takes people forward in life. Thank you.
Thank you so much, Sir.
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