Neena Wagh: Empowering Autism in India with ALAP

Welcome to Why Not Me, embracing autism and mental health worldwide. Hosted by Tony Mietour. Broadcasting from the heart of Music City, USA, Nashville, Tennessee. Join us as our guest share their raw, howlful stories. A song was spark laughter, others will move you to tears. These real life journeys inspire, connect and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance and profound understanding of autism and mental health. Tune in, be inspired, and join us in transforming the world one story at a time. Hi, I'm Tony Mietour. Welcome to Why Not Me, embracing autism and mental health worldwide. Joining us today is Nina Wog, the visionary founder of Aalop, assisted living for autistic persons. An organization dedicated to empowering autistic individuals through awareness and support. Known for her inspiring work, including her impactful session on autism awareness from knowing to accepting, Nina is transforming lives with her advocacy and expertise. She joins us today to share her journey in sites and the mission driving Aalop forward. So before we dive into our episode, we'll be back with an uninterrupted show right after a word from our sponsors. Thanks for coming on. It's my pleasure. Thank you for doing this. It's my pleasure. If you could, give us a little background on what you do. I am a parent of a special lady, Young Adal, on the autism spectrum. His name is Amoe. He's a handsome, beautiful boy, young man. And earlier I was working in a facility management and around two years back, he was diagnosed with autism. That's my life on a different track altogether because then it's said that I should leave the job and be a complete hands-on mother because at that time there was hardly much information about autism. In a way, in retrospect, I think I was somehow getting prepared because I knew about autism because I had been in an article before even I got married about autism. Then I had a couple of movies, of course, The Rain Man, The Mercury Rising and all that. I had a faint idea as to what is a miss. So that was actually that helped us to get an early diagnosis. By the time he was free, we started thinking that maybe he has a case of selective hearing because he would not respond to his name. But certain programs which used to come, he would come running hearing those signature cues. So that's how I started. Then I got involved with autism advocacy because I started looking for parents in the similar boat. This was that time when the social networking, the social all these platforms were not there. Only email was there. So there, I'm all used to go for his early intervention. I started meeting other parents listening to their trials and their balances and all. So long then back, I formed a parent group or an association or an assur. Asur is a Hindi word, it means impact. So one thing led to another from the past 20 years, I've been involved with autism advocacy so to say. So how old is he now? He's 25 years old. Okay, 25 and how was he doing? When he was diagnosed, I was told that he was non-verbal by and large. And when he turned six, there was some neurologist who was visiting the mypidagrician from US actually and he did his assessment. He says that, okay, he's good in problem solving. He has that problem solving after due. But whatever speech he will develop till the age of six, seven, that will remain like that. And that he will require assistance to our lives. But then now he can speak, smuggling of sentences. He can express his needs, if not his views. Both mama and the son have developed to understand each other's worldview as well. So when you first learned, he was autistic. How did that affect you? And then how did it affect your family? Surprisingly, I remember. I still remember that phone call I made to my brother. I said that this is what has happened and my doctor has even this diagnosis that he has autism. My brother said so what? So that gave me a great strength actually. Frankly speaking, it did not really don't ask in one go as to what really lies ahead of us. But at least in a sense, it was a relief. We were able to label his condition because I used to think till the time that maybe I'm a bad mom. He will not come to me because you know, resume my work earlier. He was just three months old and he used to and India. We have this joint family system. My mother-in-law used to take care of him. So I thought maybe he's got more attached to my mother-in-law and that, you know, maybe I'm not giving my time. She's all that guilt was there. But then the diagnosis actually gave her sort of an interest in me. It's right to me that at least I was not in the wrong somewhere. Then that gave me the strength to get into the mode of work. Now what can I do? So, you know, that followed with a lot of activities and actions. I think the first 10 years post the diagnosis went in the diagnosis. This trip is that therapist because everybody said that early intervention really makes an impact. So, like I was like totally obsessed with it. Left leg job. I was completely hands on, hotly mom, you know, totally in growth into the action mode. Now after a while, you started a charity of your own. Is that correct? So once I started getting involved with autism advocacy, one thing led to another by the time my son hit a dolly son most of the time when an autistic person hits a dolly and there's a lot of aggression or assertiveness comes and because of that they are probably they understand that they are lacking in the social expectation. So, vision also comes. So that was a very harrowing time for me and I started thinking that I am his primary care about because my husband had to earn because I had stopped working and taking care of my, so I'm always my underchild that by the time I had a young son as well. Yeah. So, I started thinking that what will happen if I got dead? So, what after us? Yeah. So that made on a different trajectory. So I started looking around asking people what are the plans, what are the facilities, but most of the parents were clueless at that time. Whatever the facilities were there across the country, they were, you know, the very old government run institutions with a lot of horror stories going on. First, I started was by the time Facebook had come. So I created a community forum on the Facebook called forum for assisted living solutions and I started collating information on this subject. I became obsessed with finding more information. So that became like a information, what we hold for other parents who are in the similar. From that I came to setting up my own NGO called alab alab as I said, it means a musical note, but it also means. I assisted living for autistic persons. So I opened up a group home for such young adults. Remise was that they should have the similar lifestyle and opportunities as we have. That's great that it worked that way. So what happened next on your journey? For a friend, he gave his house rent free for a year, for bless him. So we did make good angels along with on the journey. And so we ran like a pilot project, I would say. And I would kick out of the daily reads and the running and everything. I would hire the staff, train them and find nearby other facilities where these young adults will go and do the learning whether it's multimedia or whether getting an occupational therapy or this therapy. What was the requirement for each individual resident? So then a lot of failures happened, a lot of learnings happened. And in 2018 I set up alab. By the time I had since I was already, I would say an established advocacy person. So actually starting my own NGO at that time, I was very welcoming response that people said that this is something we were waiting for. Because I was resisting opening my own NGO. I wanted to help others and somehow complement them in whichever way I could because they were taking care of my child. But then one thing led to another, I thought that what I am expecting from others and I'm not getting, I might just do it more on my own. So I started with a small apartment and my husband is another angel who has always stood by me in whatever decisions I've taken. And they were quite radical because the day when I decided that I'm becoming obsessed with autism and my wife's son is becoming too dependent on me as a primary caregiver. And then he's really not getting that independent. So I started to the decision that he would go in a hostel. So for three years, he was away from us. But then again, I brought back, then we started this initiative with the four parents and didn't work out. Then I started this alab and we started in a three bedroom apartment. And there were four kids. Then the poor would happen. So three parents just left. I was like, back to ground zero. I've been to ground zero a lot. As I think zero is an infinite number. But it's got a lot of potential to go back from there to within any direction. So we have a big house now. We bought a land. We've been in the house. Now we have eight younger dolls and two day, these colors. And we also have a separate vocational unit. So each step along the way, you said you went back to ground zero. I believe that probably gave you an opportunity to learn. Oh yeah. Now that you have it up and running and it's working the way that you want it to, what are some of the things that you learned that you was able to use moving forward? I think a learn and I'm a big champion of that community building because you cannot work in silo. But there's a dichotomy here. You have to build a team, but you have to be the captain because if you have the conviction and you want to translate what you want, you have to come from the position of strength and not from the weakness because if you're vulnerable, if you're not here as to what you want, people will aid you a line. That was one thing. Convention is very much required in whatever you want to visualize for anything. Here I was talking about a child who will not be able to defend himself or would not be a good self advocate for himself simply because he does not have the agency of communication like you and me. So I had to be his voice and so yeah, so conviction and consistency and come what may I was questioned many times even by the family members. Why don't you take it easy? Why don't you just because you had one bad experience, you can put him in some other place in some other city. So I was really bad. No, I am going to create this thing while I do not want to be a helicopter mom, but at the same time I wanted to be nearby him. So I was very clear on those lines and I continued, you know, consistently. So I learned one thing that master has the only difference between a master and a disciple is a master has more failures. Yeah, so I embrace that. I think the second thing which I really learned is that if you want one from the world, you should be willing to give four to the world. That is being my thumb rule. That learning has to really, really from this of your beautiful platform, if this other people, that will be because they are living in a very, very shrinking world where everybody is talking about me, myself, it's very tiring and it's a very old, a turned script. We need to rewrite the script of the human life. So community living, community building is the only way forward. Yes, absolutely. So when you started doing that, what was the reception? How did the community react to everything that you was doing? Was it good? Beautiful. So, you know, Tony, when we were in this rented apartment and we had bought the plot, me and my husband and we started building it, we kept it a secret, we did not tell anyone. And when the house was built, the same parents, I called it as a command, I want to show you some. And then I took them there, one of the mother started crying and she says, you know, Nina, today I'm going to sleep peacefully. And that was, you know, like the best thing I ever heard in my life. All of those parents came forward. How do we want, how can we help? They wanted to contribute in the, whatever the money was spent in the building. I said, no, I got sprays. We have been able to do it. You can help in whichever way somebody gifted a washing machine, somebody bought curtains, somebody got a fridge, somebody got something. I always wanted to have a joint from me and I think I have the joint family, you know, 10 families, you go together, we go for shopping, we go for lunches. Just after tomorrow, there is a festival. So we're going to celebrate that, we go out for trips. So like I said, when you start with conviction and from position of strength and keep going, people will come and will align with you and your energy. And you know, they'll expand. So yeah, I'm there right now. That's great. Now that you've got it running, what's your hopes for the future? What's your next steps moving forward? I'm trying to sort of drill the whole ecosystem into the DNA of each and everybody in world here so that when I am not there, it should not fade away. You know, it has to go. It has to percolate right down to the deepest roots, you know, I have visualized and I'm very positive that, you know, I will always have more people because when you think of as a collective compared to just for yourself, people are very smart. People are very intuitive. They value that in spite of all the shenanigans that is happening in the world, I still feel the world is running only because of the good people, people with good intent. And I think you will have them. I have trained two young adults and they have now with me from past 10 years now. And I'm going them, one or two parents have also started taking active roles, different responsibility. So you can say, I have created a core, then I've created an other circle that is done. Now I'm creating a larger circle, which is of increasingly stakeholder base, like the community, like people from corporate, the neighborhood, you know, people who have nothing to do with autism, but they have good heart and they want to contribute in some way. People from all walks of life. Yeah, that's fantastic. The people that you have working there now along with the autistic people that you're helping. How much of a change have you seen over the years? You look back, see what it was. And now you can say, wow, we are really accomplishing something here. That's such a good question. So my first criteria was that I did not want to choose institutional kind of a setup simply because I did not want my son to get lost in the number. I wanted to grow nurture every individual, according to their needs, their desires, their coquinas, their weight, and whatever. And because we are working with just 10 adults, we are able to nurture them individually by seeing their own individual strengths. So one chap who came, he would not sit even for a second. He will keep running along like a rabbit. He would not hold up. And today he's painting. Today he's sitting. He has reached a level of pre-vocation where he's doing these sortings and matching and also that they're like the pre-skills for going to a vocational lady. So out of the 10, four younger dancers reached the point including my son that if they don't go to the vocational and we say sometimes today it's closed. They will say no, not truly, no holiday office. So within that, they express this thing. And then they will make sure the caregiver is not wearing those, you know, a track or something that they will take them to the Almira and they will make them wear formal clothes because that is their indication, dude, we are not sitting at home. We are getting ready and we are going for work. My son and other, they have the same bed because of this ABA or all these therapies. Make them complied to do one work. We have to reward them with any sweet or some snack or some sweet peat. I is through that system out. I brought them to the point that you have to work because that's how the light goes. It's not only transactional. It is good for your own self-esteem. And they've understood that. We're very proud of that. That's great. It's always really good to feel good about yourself. Now do you see more inquiries coming in? Is it expanding for you? What's that looking at? Every day, every day. Every day. In fact, I am very open to variants who ever need. I said my home for these kids is not scalable because again, I don't want to compromise on the quality, but these are very easily replicable. So I am telling them, reaching out to them that we can have a community outreach where you don't have to send your child anywhere, but because you are living within 50, 20 kilometers radius. If you have a family, we can give you an outreach program where our caregivers can go to your house as and when you need a response. Let's say your child needs to go to a doctor. He wants to go for a movie. He can come with us. I said parents have not opened up to that idea, but I think eventually they will. So this good one, the tab started is one of its kind in India. People are still very much comfortable into having a big number of people all coming together. All kind of sit-ups are coming, but I am very convinced about my own model because after seeing my model, there are two more organizations who have come up with similar models within the nearby cities. So I think I see a future of group homes of smaller scale, but like a boutique property kind of a thing, replicating in all part of the country. So now my endeavor is to help all those parents who would like to replicate this model. Other than that, so next step was I started from seven years, going to all these people who are running such facilities to come together under one umbrella and form a consortium so that we could set up minimum standard of living to establish good practices. So we have, along with some similar people, with a similar vision, we are agreed to this and I will link to work in that. Have come together, we have set up a new organization called Alfock. It's assisted living facility owners consortium. We have started doing peer audits based on this minimum standard living parameters that we have made in our house. Physical environment should be, what should be securities, what should be medical facilities, what should be a disaster management policies, what should be all sort of things that you need when you enter such facility. That is an excellent that we are now working on. That's great. So do you have a website where people can check out what you're doing? Okay, it's www.alap.net.in. That is my website. That can also take you to that community forum which anybody can go on the Facebook. It's called forum for assisted living solutions. In the past five years I've collated, when I started collating that information, they were only 25 to 35 organization. Today it's increased to 75 to 80. The number is increasing. Yeah. Indian parents sitting in New Zealand and he wants to look for a facility in down west, in the western state in our country. He can go to that forum, access that list and there's no chance, it's not free and can get the information. Yeah, that's great because the more information people have, the more the community thrives. Yeah, absolutely. And I keep doing interviews. I started going to, like I said, I'm obsessed with this topic. I started going and personally visiting such facilities and then reporting back to the parents groups. There are more than 3,000 parents and the numbers increasing and started interviewing them online. This happened this spread up during the COVID time. I did a lot of these online talks. So many parents came to know about this thing and especially post COVID, parents have realized that they are not immortal, that they have to start thinking like yesterday already. Because you see India is a very largely populated country with diversity in cultural sensibilities as well as diversity in challenges and diversity in the economic status as well. So government can only reach out to the lowest of the marginalized segment as people from middle classes, you know, even in India, the middle classes have also got four layers. They are left to fend for themselves. So all the community, the facilities which are coming up are parent driven. Government is not funding even one single child. So I started realizing that the building and the for sharing is the way forward. You cannot keep sitting the land of a life that somebody will do something for my child. No, that's where we are. Yes, I agree, that's very true. Now what would you like to tell the listeners that you think is very important that they hear and understand about what it is that you are doing and trying to do? A couple of things, whatever we are doing is perceived. Even in I went to US, I went to Dubai, I met people from UK as well. A because mostly women and other autism advocates because A, it's a social construct everywhere that the man goes to earn the money and women take that choice because they are the nurturers and everything. But they become very obsessed with their child and after a point, the child takes a vaccine and a mother, you know, comes in the front. We have to keep balancing. You have to keep refocusing and bring the child in the front. He is the main hero, not us. We are the side kicks. So that equation should remain like that because ultimately, we are agency. We are agency. We are not, you cannot replace our child. We have to breathe and think on his behalf. Even if he cannot communicate, we have to keep him in front. Keep going back. In their shoes to think how they would perceive the whole thing. That is why I'm saying. Second thing is, let's say in any other country with the government is providing facilities and all, care giving is diluted. As diluting very fast, we want to outsole the renting also. We have come to that point because emotional resilience has really come down. We don't have patients even for regular neurotypical kids and we belong the special-need children. Here in India, still are lucky in a sense that we have caregivers. We have average Indian household. We have a maid. We have a driver. Those who can afford and they have a house made as well. Whereas in the Bay of Dubai, you have to do everything on your own. So in that sense, sometimes the child becomes more independent than his counterpart here in India. From the flip side, because you are dependent totally on the government facilities and all the caregivers, the quality is really not that good. But here because of our community living, we somehow have a little more support. Having said that, what can come across the board is, we cannot just rely on our own thing or just the government. People have to come together. We have to see that we are in the same board. We have the common pain of our children not getting hurt properly. In most part of the world, they are not even the board banks, for the poor, they count them. The more communities come together, the more they start relying on themselves. And God knows, so sharing whatever, even if you are the poorest of the poor in a living in a village in a small potterge, even if that can be shared with two more kids. That will really go a long way. So that is what I am saying, community sharing, listening to your child, history, remain the mainstay and we keep supporting him, being his voice, engage and increase your stakeholder base. Because most of the time wherever we meet, whether it's international conferences, whether it's advocacy, we are just meeting the similar people and we are just crashing each other's back. We are not getting good ideas, we are not getting new ideas. If you want the larger world to become sensitized, we have to increase our stakeholder base, engage with as many people. Hopefully, I think we will, that population process will be complete because once the society through the roots come to know that there is inclusivity in the diversity, then it becomes a major, I think then we are all sorted. What are some of the differences you have seen between India and different spots around the world? I have not personally been, but I have studied because of the various models I had been thinking really about. The first time I come from other people because life, let's say in UK, mostly they are state-run organizations and they are very set rules that only from this area, only nearby area, the people can come. Care-giving is still very institutionalized. I have heard and I have been interacting in fact, Uzma, she was with you with Lynn, I think on your podcast. Uzma and I have been talking a lot. She loved my model and she once said that I would love to send my son to your place. I said, why don't you, I can help you in creating this kind of a community there. A, the expenses are, I think it's become very expensive there, although the land is expensive there, but still we still are way better in terms of economics in that sense. But primarily, care-giving is because I have recently heard two very order stories, although it happens everywhere, they are getting people from different countries, the third world countries, whatever. There's not enough empathicists given on training and sensitization to the caregivers. That needs to be really taken care of. Yes, well this has been great, great conversation, great information. I really appreciate you taking the time to join us today. No, my pleasure. I always, I'm happy to reach out to you know, through as many avenues. Yes, me too, and I've really enjoyed it. Thanks again. 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