Transcript
Speaker: Hello and welcome to Thriving on the Spectrum, the podcast dedicated to empowering and supporting young adults with autism on their journey towards a fulfilling life.
Speaker: I'm your host, Arpata Mohan, and together we'll explore invaluable insights, expert advice, and personal stories that shed light on the unique opportunities and challenges young adults with autism encounter.
Speaker: So if you're a parent, caregiver, friend or ally, join us as we explore possibilities to help young adults with autism thrive.
Speaker: Today, as part of our series of episodes on long term planning for codependent living among autistic adults, we are joined by Usha Rajagopal, Managing Trustee of SV Shardha Foundation.
Speaker: Usha is a professional working with young adults with special needs for the past 17 years.
Speaker: It is her passion and readiness to learn and apply herself hands-on that set her on this journey.
Speaker: She has immersed herself in areas such as vocational training, self-help, independent living, and group living.
Speaker: Hi Usha, it's absolutely lovely to have you on our episode today.
Speaker: Hello Arpita.
Speaker: It's a pleasure on my side too to be here to share a few thoughts on the work that we are doing.
Speaker: That sounds absolutely great.
Speaker: And exactly to kick us off, Oshak, could you tell us the story behind Kruha?
Speaker: How did this venture really come into fruition?
Speaker: Yes, as you had mentioned in the introduction, I've been working with young adults the past 17 years and been working in the area of vocation.
Speaker: And we look at the lifespan of persons with special needs.
Speaker: It is the early intervention going on to a school mode and then on to a pre-work and a vocational.
Speaker: So what is it that we find through their journey?
Speaker: One of the most important things that we observe is the dependence that they have on the primary caregiver, the mother or the family system.
Speaker: And at every point, what is it that happens with them regarding their self-help?
Speaker: So this is a question that was being observed by both myself as well as my co-trustees.
Speaker: And we often used to discuss about that.
Speaker: So when it came to a certain stage where the young adults with us were, say, 19, 20,
Speaker: we found that they were still very much dependent on the family for many of their things, right from their personal care onwards, though they were getting to be independent in their activities as such.
Speaker: So we really wanted to do something about that.
Speaker: And as a stepping stone towards, you cannot say totally dependent, but as less dependent as possible.
Speaker: as much as possible to that level we thought we would provide a stepping stone namely a program which we call independent where we developed independent living skills in them and that we found would work very well in a base away from home or away from place where they get trained in their vocation or whatever so we actually got a farm
Speaker: and develop the farm with activities that would empower them towards independence.
Speaker: So typically what we would say in a youngster is they would be going from one place to another for various therapies and various skill building exercises.
Speaker: So what we did at the farm was to provide a one space where they could have a lot of these integrated.
Speaker: So there was therapy, there was training and self-help and training in independent living.
Speaker: So that was the first step towards that.
Speaker: And while we were doing this, many of our youngsters had graduated and out in the world, we saw many youngsters getting employed, many employers willing to include them in their space of work.
Speaker: And when these youngsters keep moving on, they really desired to have something to do by themselves.
Speaker: They wanted peer company.
Speaker: They really lacked friends.
Speaker: And that is what they constantly kept expressing whenever we got to meet them, whether at work or in social circles.
Speaker: So that set us thinking again.
Speaker: And we thought of providing a space to them.
Speaker: a safe space so to say because they certainly need some sort of a backing our youngsters in the spectrum especially they cannot totally take care of themselves and be out in the world so we sort of put up i mean put together a program where they could come live there and from there go to work
Speaker: spend time with their friends once they come back from work, spend weekends together doing things that would give them a lot of pleasure, as well as really, really siphoning all the energies that they have got.
Speaker: So that is where the griha actually emerged from.
Speaker: That sounds really great.
Speaker: And I love the whole story about it because it seems like it's all from experience.
Speaker: You are identifying that there was a gap, there was a need and really built on that.
Speaker: So it's really beautiful.
Speaker: And thanks for sharing that.
Speaker: Speaking more about Gruha, so how did you go about with financing it now that you have this idea about going ahead with this venture?
Speaker: So basically, our trust believes in working in niche areas.
Speaker: And we are a founder, S. Vishwanathan is a person who always looked at the gaps that are there in the society where to which he could really make a difference by addressing that.
Speaker: So as you rightly mentioned, this is a gap that we thought we could really address in the area of special needs.
Speaker: And we basically started, have started this
Speaker: We have the funds as such as we are funding it and we are charging a fee from the families.
Speaker: The basic, what I would say is the charges which are, the establishment charges are totally borne by us.
Speaker: And yeah, the monthly charges, which would vary from time to time, that would be shared among the residents of Griha.
Speaker: Yeah, that's the way it would go.
Speaker: That's the way it goes.
Speaker: Yeah, it's now eight months since the Griha began.
Speaker: It began on the December 4th of 2022.
Speaker: And so, yeah.
Speaker: That is how we have been running it.
Speaker: I see.
Speaker: That makes sense.
Speaker: And as you mentioned, it's been running for about eight months since 2022.
Speaker: So there are a couple of residents there.
Speaker: So curious to understand what impact this has had on the individuals, like the young individuals who are living in the facility.
Speaker: And even from the perspective of parents and family, how do they feel?
Speaker: Yes, we do interact with them.
Speaker: The one thing is our observation.
Speaker: The other most important thing is the feedback.
Speaker: so we do have what we call a grand meeting once in a while where we talk to the residents and by and large we find that they are very much relaxed one of the first things that we got to hear from them you know but the usual we have a counselor who talks to them once in so many weeks so every time the first time they came to the counselor
Speaker: It was like, wow, we are out of our home and we are on our own and we are really looking forward to great times.
Speaker: And thereafter, we found a little, yeah, I'd like to visit my family at times.
Speaker: And now has come a stage where they choose.
Speaker: they are able to tell us see there is a long weekend coming with all the festivals uh now there is this Ganeshya Turti and then after that there is the uh October 2nd Gandhi Jaintri two long weekends um can we celebrate one of them here and one of them at home so this sort of a choice looking at understanding choices
Speaker: And being able to verbalize or at least even make known that I would like to do this is something which I observe as a great growth in these youngsters.
Speaker: Because when they came, even regarding the menu, when we used to discuss with them, it was like, yeah, everything is fine.
Speaker: We are okay.
Speaker: Taste is good.
Speaker: I like it.
Speaker: those they were all single words or single phrases like that but now when we talk to them they say you know auntie one day we can have uh full cars and another can you give us parathas so yeah so they it really it's wonderful to hear them say that so that is a very very lovely thing and social uh structure here you know the
Speaker: they really take to mentoring amongst themselves.
Speaker: It's such a beautiful thing that we see.
Speaker: They don't say, oh, he or she does not know what to do, what he or she is not able to do and sit back and just do their own thing.
Speaker: they come forward each one goes to the other at a time of need and they express I am there for you which is a very very special normally we say that expression is very very less but here we find a lot of expression this comrade which we see amongst the group is very very heartening and sometimes we hear from parents also
Speaker: that my god my adult has become such a chatterbox it's yeah yes we do find them talking a lot more and making choices this is making choices is something which came as a very fantastic revelation to us that is a very great impact for the families it's a very different story
Speaker: The families came to us actually with the thing saying, we are trying to plan what after us.
Speaker: And we think that the griha would be a wonderful opportunity for them to actually see how they feel living away from us.
Speaker: And for us also, it is a test to see whether we are able to let go.
Speaker: And we have a single parent, a mother, who says, I feel very lonely without my daughter, but I don't want to be selfish.
Speaker: I have to think of her future, and I'm ready to sacrifice my own interest or my, I would say, she used the word happiness.
Speaker: So I would, my happiness to see her happy.
Speaker: and when she went about talking about griha to her relatives initially she expressed that she was very hesitant to tell them that her daughter has gone to live in another place but later on when we celebrate we had a couple of celebrations here she brought her family and introduced all of them to say that this is where my daughter lives now and she's happy
Speaker: And thereafter, we had those relatives touching base with us and saying, can we come and visit her there?
Speaker: Can we take her out for lunch?
Speaker: Which they never had earlier.
Speaker: They've never had relatives coming out to take them out.
Speaker: They had only visitors coming to visit them at home at their invitation.
Speaker: So these are some very unexpected positive impacts
Speaker: that we hear from parents and other families, the other couple of other families also have expressed that their relatives who live very far away are amazed at the way the communication of the youngsters has improved.
Speaker: The sense of responsibility they find has improved and they really look forward to being amongst their peers at Griha.
Speaker: So that was a very heartening thing for us to hear because the question is always there when they go back home one week in the last weekend of the month, they go and spend with the family.
Speaker: How do they feel when they come back after the weekend?
Speaker: So all the parents tell us that on Sunday evening, they are ready to put their things in the bag and say,
Speaker: Tomorrow morning, we have to be there at 845.
Speaker: So which is the vehicle which is taking me?
Speaker: Are you dropping me or is auto coming?
Speaker: So they are as greedy as that.
Speaker: So this is what I can share with you as shared by them.
Speaker: It's really lovely to hear the multifold positive impact from the individual's perspective and their family.
Speaker: I really find the idea of a feedback loop super valuable.
Speaker: Other than that, the point that you mentioned about building that understanding for choice and sense of responsibility is super encouraging too.
Speaker: It can be hard for families to let go, but it's really great to see how forthcoming they are over time.
Speaker: Going back to the points that you mentioned, you spoke of how the residents go home the last weekend of every month.
Speaker: What do they usually do on the weekdays after work and on other weekends when they spend their time at Kruha?
Speaker: They've got a very structured day.
Speaker: Morning, they are up by between.
Speaker: They are very early risers.
Speaker: They are up by 5.45, 6 all by themselves.
Speaker: No alarm to ring or anything of that sort.
Speaker: And they go for a short walk of about 10 minutes just to get the sun onto them faces.
Speaker: They come back, do yoga for about 20 minutes.
Speaker: And then a little bit of setting, getting ready for the day.
Speaker: their bath and things like that come down for breakfast by eight and pack their lunch, have the breakfast, pack their lunch and they are off to whichever place they are going.
Speaker: And they're back at by five o'clock, by 4.45, five in the evening, they are back.
Speaker: Then they have, they freshen up, go for a walk, a 45 minute walk.
Speaker: come back and they have the evening get together where they light a lamp and sing or say some prayer whatever whatever they feel like but they light a lamp and sit around that for 10 minutes then they come down interact with each other talk to each other about how the day has been and after dinner they have activities they have games
Speaker: So up to 8.30, they are all engaged as a group with their social therapists with them.
Speaker: At 8.30, they are encouraged to go to their rooms.
Speaker: Within this time, they actually, they take turns in doing their laundry in the evening and...
Speaker: But that is, they learn to operate the washing machine and put the clothes out to dry.
Speaker: And those who need to iron their clothes, they go iron their clothes.
Speaker: All this after they gave time.
Speaker: And some of them, they have leisure activities of doing puzzles.
Speaker: Some of them do drawing.
Speaker: Some, another person does embroidery.
Speaker: So each one to themselves.
Speaker: And at times we find them walking across to the other person's room, sitting there chatting for a bit.
Speaker: and then heading to bed.
Speaker: That was lovely.
Speaker: That was absolutely wonderful to see.
Speaker: And we have two girls.
Speaker: So one of them goes to the other girl's room, and then they have chat.
Speaker: And then both of them together go to the caregiver's room, and then they have a chat.
Speaker: And then she says, OK, good night.
Speaker: It's time.
Speaker: Looks at the clock and says, I think it's time you people get to bed.
Speaker: And then they switch off the lights and head to their home.
Speaker: So yeah, their days are packed.
Speaker: And on weekends, on three weekends, they go out on Sunday mornings.
Speaker: So Saturdays are also working days.
Speaker: So sort of the same routine goes.
Speaker: And on Sunday morning, they have drawn up a list of things they would like to do during weekends.
Speaker: So sometimes it's a movie and a eat out.
Speaker: Sometimes it's going to a library.
Speaker: Sometimes it's a temple or beach or just walk around in a mall.
Speaker: And one weekend they choose to do housekeeping.
Speaker: Yeah.
Speaker: They do all the cobweb cleaning and changing of their sheets and all that, you know.
Speaker: They are happy.
Speaker: They choose.
Speaker: We are...
Speaker: we ask them what they would like to do, we talk to them about it and they are they feel quite free to tell us what they want to do.
Speaker: Sometimes they say this weekend could we just stay back here and just chat can we have somebody over to visit us instead of us going out so okay who would you like to have and then they have a couple of friends whom they have made friends over here or somebody some
Speaker: personal friend of theirs can i go out for lunch with my friend say okay please we would like to get introduced to that friend of yours and then you can go so we do a little bit of check on that and then with yeah they go out and come so these are the way yeah that i think they keep themselves occupied all the time they don't allow themselves to get bored
Speaker: They organize everything themselves.
Speaker: There's no need for us to intervene and do anything for them, we find, which is very, very heartening and very beautiful to experience.
Speaker: sounds absolutely very very structured and lovely they have that opportunity for social and personal experiences which I find really great and moreover they also have the chance to engage in other life skills and to me that's really nice we are nearing the end of our episode so to my last question I mean it's been several months since you've started Graha I'm sure it wasn't always a direct path to success so what are some of those challenges you faced along the way
Speaker: The first and major challenge is the acceptance of the parents for the need of a griha type of a setup.
Speaker: That's a very, very major challenge because what is it that we are offering?
Speaker: This is a safe space for an empowered person.
Speaker: So the empowered one is happy at home, is going to work, is able to do all the things he or she wants to do.
Speaker: So the parent or the family doesn't have any problem with them, doesn't look at them moving away from home at all.
Speaker: So why would they consider a griha at all?
Speaker: So that trying to get them to understand the concept of looking into the future of their children,
Speaker: to make sure that the child is the or their child is able to move away from them see them happy during their own lifetime and make sure that they are safe and fine for the future after after a time when they may not be able to actually do all the caregiving for them that is a major major challenge
Speaker: That is so far as the community or the families go.
Speaker: With the youngsters too, there is a question amongst those, the highly cognitive ones is, why should my parent spend on a place like this when I can still live with them?
Speaker: Why should I move from home?
Speaker: See, one of the things, when there is a television here in the common room, then it becomes a TV time, very much like home.
Speaker: So as of now, we're just trying to avoid a television set coming into the living space.
Speaker: If there is something that you want to see, yeah, you're most welcome to do that in your room.
Speaker: You have your tablet or your tablet.
Speaker: mobile phone or laptop, whatever you want to see, you can see your room, but we will not be looking at a common television.
Speaker: So there are youngsters who would like to have a common television and big screen and television times, loud music.
Speaker: That is one aspect.
Speaker: Another aspect that could be a challenge so far as the youngsters who come in is the social norms that they have to follow, the social system that they have to get used to.
Speaker: At home, it is the parents who are used to them the past 20 years, 30 years.
Speaker: And in many households, what the child says goes with the parents.
Speaker: There is there's been a beautiful understanding already what the child would like and what the parents would like to offer.
Speaker: So here is a different setup altogether.
Speaker: They have to understand the setup and the give and take is at a totally different level.
Speaker: It's not at a parent child level.
Speaker: It is not even at a sibling level.
Speaker: It is at a peer level.
Speaker: So when the give and take is at a peer level,
Speaker: It is very, very different.
Speaker: We find that there could be challenges.
Speaker: There could be challenges.
Speaker: They have not expressed so far, but we find that there are times there is a little bit of a struggle.
Speaker: They go within themselves.
Speaker: There is no external struggle, but they just sit back and then come forward again.
Speaker: So this sort of adaptation to a new environment with mainly the peer group could, yeah, for each one of them could really be a real work with themselves, work unto themselves.
Speaker: That could be a challenge for the concept of griha itself at times.
Speaker: For example, there was one resident we had who came in.
Speaker: He said, I would like to try griha for three months.
Speaker: And he was very, very clear that he always wanted loud music on his laptop.
Speaker: And he wouldn't like to come and spend time with the others in the common space.
Speaker: And he does not like yoga.
Speaker: And he has no time for going for a walk.
Speaker: So given that and he doesn't like vegetables, he will only eat pasta and if at all he would he wouldn't mind some upmas and that's it.
Speaker: So every aspect of his time here in Griha I would say should have been a challenge to him.
Speaker: the day routine and the food that we have is what the most organic and the very what i would say sattvic and nutritious where you have one with lentils and two vegetables and then roti
Speaker: Sabji.
Speaker: So this is something that she found very, very difficult to contend with.
Speaker: But at the end of three months, he said, Okay, now I'm ready to go home.
Speaker: I'm going back home.
Speaker: And we said, So how did you feel?
Speaker: He said, I will give you my opinion.
Speaker: That's what he said.
Speaker: I'll give you my opinion.
Speaker: I'll write to you.
Speaker: So as soon as he went home, the next day,
Speaker: He said, can I have a conference call with two of you?
Speaker: I said, yeah.
Speaker: Many, many things I have learned.
Speaker: I learned to wash my clothes.
Speaker: I learned to iron my clothes.
Speaker: I learned to eat with friends.
Speaker: I thought I could never have friends in my life.
Speaker: I could never have anybody who's interested in me.
Speaker: But now I find that there could be people who are interested in me.
Speaker: We said, yeah.
Speaker: said yeah this is what i want to say now okay fine and then next day there was another huge message was i like this i like this i like this and what i learned was to eat vegetables two weeks after that he sends a message saying today i bought beans i cut beans and i had beans for real for lunch the learning what is the impact i think they also intertwined
Speaker: And this is a beautiful journey with them, which we are all enjoying together.
Speaker: What a wonderful story.
Speaker: It's great to hear how these challenges could be turned around and become impactful too.
Speaker: I also appreciate your candidness with sharing the potential challenges from different angles as parents, individuals and Kruha itself.
Speaker: I'm sure acceptance can be a tough battle, but recognizing just how empowered and independent the children are is reassurance that it's a step forward.
Speaker: It's been lovely talking to you on this episode.
Speaker: Are there any last thoughts you would like to share?
Speaker: We would really love people to explore this concept of griha.
Speaker: This is set up in a non-commercial manner.
Speaker: And it's the concept as such is something which we want to pose as a model for replication.
Speaker: It is not that we want to run a griha with 20 residents, want it to be a grand hostel for all the persons who are here in Chennai know.
Speaker: We would really like to share
Speaker: our experiences and people to take up this concept, try to understand the needs.
Speaker: And we are open to understand, to understand, trying to understand what could be the need other than what we have understood.
Speaker: So with a certain understanding of the gap, we have started the griha, but we are open to discussion and brainstorming
Speaker: if there are other ideas.
Speaker: Here it is being run totally by a group which knows or knows very little about the persons who come to live in there.
Speaker: How would it be if a person who is constantly associated with them in their part of lives?
Speaker: So how would it be
Speaker: if they were part of the some aspect of this.
Speaker: So these are all questions that are there and we get multifarious answers to that.
Speaker: So right now it's going the way it is.
Speaker: But as I said, we are open to hearing from everybody.
Speaker: This is a learning and what we have learned, we are happy to share and we are ready to learn more.
Speaker: That's really lovely and beautifully put, Tusha.
Speaker: Looking back, what stood out to me through this episode was that some autistic individuals do want to live away from their family, be with their peers, and lead as independent a life as possible.
Speaker: Residential living facilities could be a great way to enable autistic individuals to achieve this, while also inculcating a sense of responsibility among them.
Speaker: Thank you so much for joining us today.
Speaker: If you haven't already, make sure to subscribe to our podcast on your favorite platform so you never miss an episode filled with inspiration, support and hope.
Speaker: On our next episode, we will be joined by Mary Barua and we'll discuss topics related to assisted living at Ananda.
Speaker: Until next time, take care, stay positive and keep thriving.
