Clinic Spotlight: The Karachi Down Syndrome Program

On Season 11, Episode 4 of The LowDOWN: A Down Syndrome Podcast, Tabish Shazad gives us the lowdown on the Karachi Down Syndrome Program.

Transcript

Thanks, Danielle. This season marks the start of a new series at The Lowdown podcast with our very first clinic Spotlight. We want to highlight some of the amazing clinics and organizations around the world that are dedicated to providing services and supports for individuals with down Syndrome and their families. Today, we are taking you to Pakistan, my home country, to spotlight a remarkable clinic that's making a difference in the lives of individuals with Down Syndrome and their families. This clinic is more than just a place for services. It's a hub for support, education and change in a cultural context where conversations about disability are still evolving. In this episode, we'll explore what disability inclusion looks like in Pakistan, what challenges families face, what progress is being made, and how cultural values shape the experience of parenting, advocating and supporting individuals with down syndrome. We'll also reflect on the similarities and differences between disability support systems across countries, and what we can learn from one another. We are very lucky today to be joined by Tabish Shahzad, the CEO of the Karachi Down Syndrome program. She's an adventurous woman with a passion for helping others. She has experience across multiple industries, giving her a very broad perspective. Currently, she works closely with children with down syndrome. Her work is deeply meaningful and personal, and she believes in the power of empathy and adaptability. Welcome, Tabish. It's really nice to have you join us today. Thank you. Thank you for having me on your podcast. Pleasure is all mine. More love. We're excited to get to know you first as a person. So we have some secret questions for you. Um, and these are a little bit focused on Pakistan because I've never been there and I would love to go. So the first question is, if I were visiting Pakistan or somebody else were visiting for the first time ever, where would you recommend that we go first? Of course, I live in, uh, the biggest metropolitan city of Pakistan, which is Karachi, and it's the most fun city. Uh, people from all over the world and belonging to different cultural background and ethnicity live here in this city. So I would suggest Karachi. It's very lovely. There's a lot to see. I imagine you know Greece. Okay. And a lot. And a lot to eat also. Karachi is famous for its delicious food. Oh, excellent. It's like you knew my next question, which is. What should I be eating first? What's your favorite dish? Um. Well, if I would have to suggest you. And if you're okay with the spices biryani because nothing matches like nothing in this world tastes like Karachi's biryani. I've had biryani all over the world, but I've stopped trying my luck with biryani all over the world. Also, because Karachi biryani just tastes the best in the world. Yeah. Yes, yes. If it's not pointed everywhere else. Yeah, yeah. You know, that's saying if it's not broke, don't fix it like it's. Yeah Karachi knows how to biryani properly and that seems to agree with me And I think you're missing Karachi biryani a lot. Yes. My dad and I constantly talk about Karachi biryani. Tabish asked the last question. Um, if you could learn any skill instantly, what skill would it be? Um, well, these days, uh, in terms of, uh. Because of course, it's been a couple of years now that I've been associated with, uh, kdsp. And, uh, I would really, really love to learn, um, actually giving therapies because, uh, you know, you need hands on. Of course, I know the strategies and the techniques and all the checklists that you know, of we've developed, but hands on, I wish I could do that. Of course, I don't have a degree in that. I would never be able to, but I wish I could get that degree at this age and in this, uh, time of my life, which is very difficult, but something that I wish that I could do some. Some time. But then again, um, on on a personal hobby level, these days I'm learning horse riding. So that's something that has become my morning passion. I don't know, somehow I wake up at like 5 a.m. to go horse riding. So yeah, these days sounds fabulous. Kids are amazed by this new love of mine. But. That's awesome. Like writing. There's a very famous beach in Karachi called Clifton Beach, and there's always horses on there that you can ride. But I was going to say, Tabish, I think Marla and I would agree as a speech therapist and an occupational therapist, it's never too late. If you ever want to do OT or SLP, you can do it at any age. So I take that advice very seriously. Yes, exactly. Okay. Well, thank you so much for answering those questions. It's nice to kind of get to know you as a person a little bit. Um, so let's kind of start by diving into our topic today. I would love to start by asking you what inspired you, um, to kind of take this position as the CEO of the Karachi Down Syndrome program. And can you talk a little bit about the history of the clinic? Um, so, you know, a while back somebody asked me this question that, um, what is that the most joyful moment of your life? Would you would like to relive? Yeah. And then, I mean, obviously, I took a minute to think about it since, Alhamdulillah, there are so many. But then again, you have to if you had to pick one. So instantly, what came to my mind and my heart kind of skipped a beat because I missed that moment a lot, was the first time I held my first born in my arms. Mhm. Yeah. I mean, I could instantly go back to that minute when I held my daughter, my firstborn, in my arms. And I don't think any other feeling could, uh, you know, even match that. And, um, then I also thought of a parent who, um, who's given the news of their firstborn with the words I'm sorry instead of congratulations. And I was like, oh, my God, I can't even imagine. I can't even get there. How those parents must have been feeling at that point of time where they're waiting for the biggest news and the most happiest news of their lives, and that news is broken by the words I am sorry instead of congratulations that trashes their world down to pieces, right? Um, that is exactly what happened, um, in a 2011 where a young couple was, blessed with a girl, their first born with down syndrome, and the news was broken with the words I am sorry. And um, little did they know what does I'm sorry mean? Um. When they inquired what is down syndrome? Um, people had all the clinical, um, definition of what down syndrome meant, but nobody had answers to their list of questions of, okay, what next? What can we do to make to give a purposeful life to our daughter? Um, but of course, all the questions were either answered or not answered at all because there were no solutions in the country at that point in time. So of course, that young couple and their world crashed also. Right. And uh, few hours after the birth of their firstborn, she went into cardiac arrest. Um, and, um, the every time they would go, every day they would go to the NICU. In the morning, they were being told by the bestest of the doctors that stop fighting hard for her life. And I mean, you know, that statement and the thought, um, made me realize how important it is to have that kind of community support, to keep yourself going, to have a positive approach to life. Every day they would be confused whether to hope for her life or stop fighting for it. Anyways, that little baby fought for her life. She came out of the NICU. She, um, was of course on vent for a few days as well before that. And she got discharged. That's the day when the parents decided that we would try and, uh, give her the best life ever. So obviously, they had all the resources and means to take her to the best clinic of down syndrome in the world. Um, and, uh, when they did, they were welcomed by an adult with down syndrome in that clinic. So the contrast, um, gave them a lot of hope. And, uh, and that's the day when they decided that they're going to give the first 1000 days of her daughter's life to her dedicatedly. And then they will form this organization. That's where Cdsp was born, Boston Clinic. Um, the thought was born. And, um, fast forward to 2014. Cdsp welcomed its first six families. Um, and of course, there's there was no manual to start. Um, how to start an organization for people with down syndrome. Right. And, um, um, that's everybody just got together and started doing what they felt it was right and needed because, um, when obviously the founders started meeting the families, uh, the other families who had kids with down syndrome, they had the similar list of questions to be answered, waiting for somebody to answer their questions. Um, that, for example, if your kid needs therapy, which is very specific to down syndrome because of hypotonia, okay, where can I take my child? But nobody had any answers. If the kid needed some development. Pediatrician consultancy. Where is that development pediatrician? Well, there is none in the city of Karachi. So? So you see, that's how all the parents started as a kid, started as a support group session. And um, look where we are today. We have a six service areas, um, offering to two people with down syndrome. And your question of why I joined Cdsb. I've been in the development sector since the last 20 years. I worked in multiple social organizations related to different causes, for example education, health, and so on and so forth. Um, and my last was, uh, pediatric emergency. Um, of course, when you work in a pediatric emergency, you kind of, um, see a lot of, uh, real struggles of masses in this country. Um, that's where I was approached for Cdsb. And, you know, I, I tell this to people, but I definitely don't do justice to my feelings, because when I came to Cdsb the very first time to meet the founders and the board, there was an instant feeling of there was something in the air, I just couldn't tell what. And every time I would come here, I could feel that. And, um, I have a little issue that I have to know the organization and understand the kind of expectations that are linked with this job so that I can do justice. So before I even join any organization, I do pay some number of visits to understand the organization and whether I can bring about any positive change, um, in, in the organization. So every time I would come to Cdsb, I would get that feeling and and I couldn't tell what it is actually, because, um, you know, um, I was working in even, um, developing certain skills in my previous organization related to pediatric emergency rooms amongst nurses and doctors. And I was failing miserably. Um, but then when I came to Cdsb, when I joined Cdsb, I realize what is that thing that was in the air and that was the compassion. I mean, it's it's easier to say, but it's extremely difficult to inculcate compassion into your employees. And I would ask the founders, did you do any kind of, uh, transfusion or compassion into every employee I met? How did that happen? How did you do it? Yeah, I've been trying to do it in my previous organization among nurses and doctors, and I don't know what is going. I couldn't identify what I was doing wrong, not being able to inculcate compassion, but what happened here? But then I realized it's it's the work. It's the people we serve. It's the kids we serve. And you cannot do that without having compassion for these children. Um, so that is exactly what made me decide to join Cdsb that if if from the level of the highest level of the hierarchy to the level, who's the person who's at the reception. Everybody was wearing demonstrating compassion. And, uh, you know, when you have those, uh, those that question mark, that how did that happen? You want to be part of that organization or that team to understand something draws you to it. Yeah. Mhm. Right. So that was it. That was it. That's the time I decided that I it's so beautiful and such a beautiful feeling. So I have to be part of this team and I, and I can't be thankful enough to God for giving me this opportunity. I'm super thankful. Yeah. Oh, that's such a lovely story. Feeling all. Um, I do agree with you. I think it is one of those things where it feels like a calling. I think Marla and I feel very similarly. We have both very different avenues for how we got to But the reasonings are very similar, where we feel like it's a calling and it's something that we're meant to do with our lives. So we wholeheartedly understand exactly how you feel. Um, can you talk to us a little bit about so Kdsp has they use, um, a or which is both in Urdu as like their, um, kind of model for how they provide supports for, for the families. So can you talk to us a little bit about what that is, and what are some of the services that Kdsp offers for individuals with down syndrome and their families? Um, so, of course, Kdsp has taken over a mission of advocating for, uh, people with down syndrome, right, to be able to, um, to, to, you know, cater to all their needs, um, be it personal or even professional. Um, and how do we do that? We call ourselves a Kashti, which is an acronym of our six service areas and means both in English and the reason why we call ourselves a boat and a kashti is that we embark on a journey with individuals with down syndrome and their families from day one of their life till the time they need us. So of course, we have, um, newborns from day one of their lives coming for therapies. And our oldest, as of now, he's 56 year old and he's a crafter. He makes products under our, um, vocational training program, and we sell those products. And he's an entrepreneur, right. So I'll quickly take you through what Kashti stands for. Um, but since it's an acronym in Urdu. So I'll try and translate it into English as well. So, um, the K in Kashti stands for Chandani Sahara, which means family support. And that for us is the biggest challenge because, you know families It's such a deep rooted cultural stigma in Pakistan that the most difficult thing is to bring the family to Cdsb. They would know of Cdsb. They would know of the good work that is happening. Uh, because now that we are 11 years old, especially in the city of Karachi, people are aware, uh, are now aware of, uh, cdsb as an institution who has answered all their questions about the kids with down syndrome. Um, but say, for example, if we opened our chapter in Islamabad last year. So families were on our network, but they just won't come. Why? Because they had certain barriers, which were of course, some of them were perceptual barriers. Some of them were financial barriers, but they the biggest barrier was the societal barrier. And if you know that kind of And you guys are obviously therapists. You would know that the more you delay bringing your kids to the centers, the more delayed their development is. Right? So our our our our hope and wish and our our team's KPI is also just to get those kids at the right time. But it's so difficult. So how do we do that? We engage with the families. We, uh, do a lot of family support group sessions, which includes informational support group sessions and emotional support group sessions as well. Um, we provide financial support to the families, which includes obviously subsidized rates for all our services, as well as giving them traveling allowance as well, because, you know, it takes us a decent amount of money to bring their kids to our centers, right, especially in, um, areas like Islamabad. So because people come from different little smaller cities as well. And we have a very beautiful program known as Hamrahi for our, uh, families, which means, you know, somebody who's going through the journey with you, wherein what we do is, um, parents who have been associated with Kdsp for a longer period of time. We associate them with the newer parents. So half of their problems are solved there because there are certain things you wouldn't be comfortable discussing with the organization, which you would be with a parent who has a child with down syndrome and has been coming to Kdsp for a while. So, um, that is what we work with the families to change their mindsets. Um, we have had, uh, families come to us, mothers come to us with suicidal thoughts, um, because she is being blamed for giving birth to a child, to a kid with down syndrome. So you. Because again, because of the stigma that there is nothing that you can do for them, and they will be a burden instead of, um, you know, a moment of happiness for you. But that's how it works. So that is what we did. We do for, um, the family under our family support program. Next is Agahi, which is awareness. So of course, once the family's mindset has changed and now they are willing to bring their kids outside, not hiding them behind hidden doors. Um, now the society has to be ready to include them, right? So how do we do that? We do a lot of awareness and sensitization sessions. Um, you we get an opportunity and we would like to talk about how to include people with down syndrome, be it universities, colleges, schools, corporate organizations, clubs and so on and so forth, because everybody is part of the society, right? And everybody has to include them because you see, nobody likes to be tolerated. Um, and even if you're not spelling it out, if you are tolerating someone, that person would feel it somehow or the other. Um, so there are a lot of societal barriers that we have to bypass and deal with. Um, say, for example, one of our, one of our intern, uh, our graduate of education for life vocational training program, he was interning at an organization. So his colleague at the time of his farewell endorsed that, um, once. Uh, his name is Danish. So once Danish was coming towards the lift while I was in the lift, I stopped the lift for him. And in the mind I was calculating that I will ask Danish which floor does he want to go to? And I will press that button instead. What happened? He came in the lift and he turned around and asked me, can I help you? Which floor do you want? So it's a societal barriers that we have. Everybody has to bypass, of course, some people out of love and care they would like to support individuals with the intention is good. Yeah, yeah, but but you have to realize that you're kind of not letting that person feel empowered or even stepping towards 100% independence. Um, so that is what we do with, uh, aagahi and awareness. We do the biggest, uh, inclusive carnival in Pakistan. Um, that happens every year. Um, and within a span of five hours, we get a footfall of 7000 people. And what we try to create through that carnival is a small world where everybody gets the equal chance to enjoy and live their life, um, people and kids with all disabilities, they get together. We have 100 plus games who with Which any disability can play. So you don't have to pick and choose. That okay, this is not for me. This is for me. This is not for my child. It's. And our families endorse that. It is a day of ease for us, which is the biggest occasion for us. We we get new clothes. We call our families from different cities of Pakistan to see, okay, this is all what you have to do. It's the same facility within the city of Karachi, same way of having any carnival. You have games stalls, we have food stalls, we have certain activities. But what's the difference is the mindset. The only difference is acceptability. Nobody is is feeling that you're being tolerated. It's for them because these are the standards that we have created, right? That you can go here and you can't go there. Families come to us and say that our own relatives and our friends have stopped calling us at shows and events and weddings and parties. Because of my child. But here you kind of you do this for our kids, which is huge, right? So which is which gives them a hope that, okay, their kids can also enjoy. Our families come and tell us that we were asked to leave the mall because our kid had down syndrome. Imagine, I mean, who allows anyone to exclude individuals with down syndrome, right? So it's their right to enjoy equal opportunities that are available for all children. Next is Senate, which is of course, healthcare. Um, and you guys know better that, you know, they have some underlying condition. Uh, kids with down syndrome. But what we do is, um, we have very well structured partnerships because Kdsp is a true believer of partnerships. If somebody if some organization is doing a fantastic job in, say, cardiac, um, so we would partner with those organizations. Now those partnerships are not just on paper signing an MOU. They're very well structured partnerships. Say for example, we have dedicated time slots in these bigger hospitals, big, small, whatever partnerships we have, only those time slots we give. We get appointments for our families, we inform our families, send all the healthcare reports to those individuals, the doctors there, making sure sending them a reminder call that they have to go for their appointment and then after appointment, getting their doctor's note and progress notes and putting in that system. So it's a very well structured healthcare partnerships. And then we have a general pediatric clinics going on as well, and developmental pediatric clinics as well. For our children. We have a lot of health camps for our children, so that the whole objective is that, you know, they don't have to go here or run here and there from door to door to get the best quality for their kids. And if there's a financial barrier, we try and cover that as well. And um, very recently we've started doing sleep clinics as well, which is first of a kind in Pakistan for our kids. And, uh, it was just like, you know, one of those things which we would be like, okay, what can we do to, um, prevent sleep apnea or, you know, increased performance of our kids because of, uh, taking care of sleep apnea. But it's just that everything gets together when you have the right intention. Right? So we got we got a supporter from, uh, Philips to give us, uh, the equipment. Then we had a doctor read our reports and write our suggestions, and then everything just got together so beautifully. Now we have a very smoothly running sleep clinic as well. Um, next is Hunar, which is vocational training. That is for our 14 plus age group of individuals with down syndrome, wherein we have, uh, multiple programs running. But, um, the the biggest one is education for life. That is a three year structured program wherein, uh, the first two years, um, all our, uh, kids are exposed to a couple of dozen programs, skilled programs, which includes painting, which includes, um, pottery, cooking, paper, craft, uh, block printing and so on and so forth. And the last year become the year of specialization for them. So if they choose to specialize, say, for example, somebody is fantastic in photography. So the whole year that kid is going to be an expert in photography and they will have huge projects. They will intern with the photographers. You know, just so that they become independent in whatever they choose to for themselves as specialization, like any other university degree. Right? So there are certain basic courses that they have to take, like computers and life skills and cooking, and then they choose a specialization. And um, we recently had our graduation. All our kids who are graduating now have their Instagram pages, their making stuff, what they have learned and specialized in and selling beautifully, wrapping them up and dispatching their first orders is just so beautiful. And now the parents are seeing the impact right. Mhm. And then of course under this um vocational training we have a brand uh which is known as leher which means waves in English. And under that brand we sell all the products that our crafters make. And 100% revenue goes back to the crafter. Yeah. The cost of making that product is borne by Kdsp. So that's the that's the that's the whole change that we wanted to show to the society that from a day where they're being considered as a social burden to the day they become entrepreneurs, they start earning for themselves. They make the beautiful paintings ever. We recently held our, uh, two art exhibitions and some of one of the artist. His name is Hussein. He was standing. So every time a painting would sell, we would put a small red dot on that painting. Right. That this painting is sold. So that kid, he was standing right next to his painting, and of course, his painting had been sold by then, and he was very worried. I said, Hussein, it's okay. Your painting is beautiful. It will sell. But what are you going to do with this kind of money? He had made his decision, and he had made his made up his mind what he had. He said, I want to buy a blue bicycle. Yeah. And I was like, wow. I mean, you know, his aspirations are exactly the same as my kid or any typical child. So what makes him so different that we're trying to treat him so differently? And of course, the moment he saw the red dot, he was dancing all over in the gallery and his mother was in tears. And now, finally, he'll get to buy his blue bicycle, which he's been eating my brain for. So that is what we do in um. And then t is for, which is education. Um, because of course, education is, um, you know, you have to make sure that they get equal opportunity. And the research also suggests that in kids with down syndrome, they learn and thrive more in mainstream schools. So that's what we do. We prepare them for the mainstream schools. Um, we have a school readiness program wherein kids from 1.5 to 3 years, they come first to be prepared for mainstream schools. We get them admitted into mainstream schools. We make IEPs for them. We do awareness and sensitization sessions in those schools, and even if they get enrolled in those schools and they need more reinforcement or remedial, was specific to down syndrome, they come back. They come back to us under a program which is known as Tailored Assistance Program. So they come in the afternoon if they go to schools in the morning, and if they go in the afternoon to mainstream schools, they come to us in the morning. So this is what we do in education. Last but definitely not the least, is the early childhood intervention. That's the eye in which means and we of course have uh, ECI, which helps us in giving the best chance to achieving full potential to these individuals by giving them physical therapy, working on their gross motor movement, uh, occupational therapy, working on their fine motor movement, and then, of course, speech therapy, working on the Communication and language skills. We also have behavior therapy as well, but that comes under healthcare. So this is what our party stands for. Um, sorry, I took a very long time in explaining, but that is why we call ourselves a one stop solution. Because once the families enter our doors, they we have, we ensure that they don't have to go anywhere else. Yeah, yeah. And I think that's the great thing about the Kashti or the boat model, is that it is an A to Z model, right? Like you're really trying to incorporate everything that you possibly can to make the experience the most meaningful and the most useful, um, for your for your students and for their families. Um, no, I think it was perfect. Um, and that is one of the things that people say is very exhausting, is going around and around and around and around to a different place for every different kind of service. So providing it all in one place is just, I imagine, so helpful. Yeah, it is very helpful. And that's what CCP's mandate is that we go deep with an individual and cater to all their needs. And of course ensuring quality because these are the there were two promises that the founders made. One that at no cost, we are going to compromise on the quality, even if, you know, sometimes, um, the structure suggests that if there is no other organization and no other solution to the problem, then you can give an average quality. We have the best quality. There is no compromise on the quality. Even it took us ten years to go move out of the city of Karachi. Why? Because we were trying to ensure that the same quality gets replicated in other chapters as well. And in Islamabad. And now our latest chapter in Faisalabad, it's the same level of service delivery that we ensure. Second promise was that no family would be denied services because of financial reasons. So 96% of our families are on financial support. Yeah. Yeah. And crisp would be considered a nonprofit organization. Do you think like, do you get a lot of, uh, because I know you do a lot of fundraising. A lot, a lot a lot of fundraising. Um, but obviously operation costs and all those things can get expensive. I've been to Cdsp. I've loved it so much. It's so similar to Dzfe. Um, but there's beautiful equipment and all those things. So can you talk a little bit about kind of that component, and how do you manage to provide financial assistance to the families that need it? Seriously is a non-profit organization. We are a section 42 company and we are a non-profit organization, meaning, uh, we have to raise funds to support our services. So we do that through, uh, of course, a lot of fundraising activities, which includes, um, fundraising events. For example, we do golf tournaments in this city and a lot of the community of golfers, they raise funds for us, they participate, and we do a lot of fundraising nights also. And, uh, a lot of corporate organizations also donate us the corporate social responsibility, um, charity that they do. Um, because every organization in Pakistan is also mandated to give a percentage of their profit to non profit organization. Um, and uh, the government of Sindh also supports us. But, you know, the biggest challenge that we face is that we work on a very niche cause, which kind of doesn't resonate with a lot of people. Yeah. Same here. Say for example, we, we we give them this review rundown of our kashti, uh, and the six areas of service. Some of them can't even believe that this is happening in Pakistan unless they come and see it. So the you know, that's our biggest sales pitch is that please come and see what Kdsp is doing. Yeah, exactly. You have to see it to believe it. Um, you know, for the longest and I. I don't blame them for not being able to believe, because for the longest, there was no solution for individuals with down syndrome, right? So and certainly there is an organization which is providing a one stop solution for to everybody. It's it's insane to believe. Right. But, um, for people to resonate with this cause they have to see it to believe it. Uh, and unfortunately, um, our country has bigger problems to solve. Like food, like shelter, like health, uh, like basic primary education. So, of course, you know, when you talk about giving causes, disability comes really down in the list. And within disability, intellectual disability comes again. Physical is more um, you know, they they want to give it's the instant gratification of providing wheelchair for physical disability. Then intellectual disability comes and then down syndrome. Yeah. Right. Um, so this is this is a very big challenge for us. But of course, uh, the team is doing fantastic in raising funds, as you also mentioned that, um, it is very costly to keep up to the quality. Uh, ah. Education model. Ah, therapy model. Our skills model is a one is to one model. Right. So you've seen our therapy is a one is to one education is a one is to two. Which means if you get a certified education special education specialist it is very costly. Yeah. Um, people do often ask us that. Uh, how why does it cost you so much to educate a child? Um, with down syndrome. And then when they come and see, um, that the child has a specific every child has an individual IEP, that's when they realize, okay, you're giving the best to a child. That's where we see that we go deep within a child. Where is where that a child is standing and where do we have to take them is what we work for, which of course needs certain kind of expertise, needs certain kinds of equipment, needs certain kinds of training, and the whole structure that we have to the organization. Um, but Alhamdulillah, Allah has been too kind that we were able to open our third facility in Karachi as well. So that has been catering to a huge waitlist that we had, unfortunately for many years, and because we were running 100% Percent capacity. Um, that is where we reached out to the government of that. You know, we have a huge waitlist. And it used to hurt me and the whole team keeping me up at night, that how do I start giving services to these individuals with down syndrome? We call them and we tell them to wait, which is the, the, the, the biggest barrier that we ourselves were creating. But now that barrier has gone, Alhamdulillah. And we are catering to all the parents now who have been on our waitlist for the longest. Yeah, I think you're you're really rapid expansion. I mean, you said it was a decade and I'm sure it felt long, but it's fast to expand to so many cities and so many facilities where one facility we've been there and we, you know, that's not happened for us. Um, but I think it says a lot about the demand for support from all over Pakistan. Um, and I'm wondering, do you feel there's additional needs in other cities still at this point that you're looking to expand more, or how does that look at this time? So we do have our family network all over the country, right? And um, they are on our panel. We do certain waitlist engagement. We do certain one time guidance and home plans with those families because of course we don't have our physical centers there. But now what we are envisioning are like hub and spoke model, right? So we have our centers in major cities of, uh, in every major city of Pakistan like we have in Islamabad. And now we have in Islamabad. And the moment you, you know, launch any facility, we get requests from the remaining cities. When are you coming to Lahore? When are you coming to Sukkur? When are you coming to Hyderabad? Um, our dream is to have that hub and spoke model that we are present in those bigger cities because it's the demand is there, but the scarcity of resources is also there. So that's the reality that we have to live with. Um, we have launched our Faisalabad chapter without an occupational therapist, because we haven't been able to find one that matches our quality. Uh, that that is also a little problem with us that we have to, you know, look for the right quality because we cannot compromise on that at all. We would rather not give the give the therapy rather than giving wrong therapy. Um, so that is our plan. Inshallah. We'll be we are planning, uh, to open a center in Lahore, uh, next year. So, uh, that will cover a lot of areas in the province as well. And then, inshallah, one more in another city of the province of Sindh. Um, just to cater to some of the rural areas as well, because, again, the, the biggest problem, as I mentioned, is the scarcity of the resources. Uh, financial resources are there. It's mostly the human resources where we don't want to compromise at all. Mhm. Mhm. Um, can you walk me through briefly what a typical day. Looks like I had the privilege, uh, about two years ago, two and a half years ago to visit Cdsp. Um, and the original location. And I kind of walked around and I saw all the really great things. But what is a typical day look like for a child who's coming in for services? So of course, we have six different service areas and then kids for they're coming for, uh, different services and different points of time or the week. But if say, for example, if I talk about our age group of 0 to 7 years, um, they would be coming to our center, um, in the morning for therapies. Uh, then they will go to the other center to take education, or vice versa. The first batch comes for therapies. Then they take up the second batch of education or the first batch of education. They take the classes in the morning and they come afterwards for the therapies. So that is something that we have to adjust every time the new session starts because their timings change. So we have to accommodate. Then they start going to mainstream schools. Then we have to accommodate them in the afternoon. So that's what a typical day would look like for a 0 to 7. For uh 7 to 14. They would come in the afternoon for tailored assistance program. They will be going to mainstream schools, and they would come to us in the afternoon for further remedials for 14 plus age group. They come to us. They we have three different years, so they have three different timings. They would have different class timings because everybody Uh, so every year would be at a different IEP and there would be a different student learning objective for every kid within that year. So the instructors would come at different times for the whole day. And then we have certain programs which are open for all. We call them skills Lab. So they're not a three year program. But if we offer like a yoga program so anyone can register in, that program stays on for six months or four months, depending on the on the need of that program and the instructors availability. That is what a day would look like at Cdsb. So our third facility has. So right now the two facilities that we had initially was divided amongst, uh, these two programs. One of them were was known as Learning Center, where our education and skills would be happening. And the other just down the road was Development Sector Center, which would cater to healthcare. and ECI. The early childhood intervention. But our third facility, which is like really in the center of the city now, because the city has expanded so much, is it's an integration of both of these facilities. The same facility, the child is having therapies in the same facility. The child is waiting for his education class. And if they're adults, they're waiting for their skills class and their ESL classes. Do the parents wait for the child? Are they with the child? Do they leave? Drop the child off and come back later? How does that work? So I call it a triangle model. And because it's the teacher, it's the child, and it's the parent that makes the development far more better if they work together. So our model of therapies makes it mandatory for the parent to be sitting inside the therapy room Um, because one, it, um, keeps us transparent. Um, second is that the parent has to learn all the techniques and the tactics that the therapist is using and follow the same throughout the day or throughout the week or till whenever the child is coming next. Because, um, if, say, for example, the therapist is teaching how to say the letter, um, she uses techniques of using bubbles or putting fingers on their lips. The parent must be using some other technique so the child will get confused. Okay, which technique should I follow? So that's the model. Um, we follow in HCI in education and skills, the parents have to be sitting in the waiting room, but they have to be, um, available at the facility, either of the parent or whoever the caretaker they have nominated. They have to be at the facility, because sometimes, of course, the kid might just feel low or showcase some behavior concerns as well. That is where we kind of engage the parent and solve the issue together to make the learning more effective. Mhm. Mhm. I'm so glad that you describe that. I can just imagine right now that other people and families in other places are trying to picture if they could pull this off. This is really a humongous project and really quite spectacular model of care. I'm really just very happy to hear about it. Thank you. Marla. Um, and you know, one more thing we do for the parent is while they are waiting, as I mentioned, we try and align the information and the emotional group sessions for the parents and even the parents contribute in, say, for example, if we have a craft class, um, since the parents help these individuals maybe finalize a product or showcase the product online to be able to sell it. That's where the parents training also comes in. If we're giving employability classes, the parents have to be listening to those classes because, you know, you know, a couple of years ago, when, um, cdsp, uh, graduates were offered internships, none of the parents were ready to send their kids for internships. Yep. Out of care, out of concern that how is my child going to go to the restroom alone? How is my son going to eat his lunch? How is my daughter going to go in a public transport? Get into the office, call the Lyft. Who are the people? So I, the team and even myself, we had to do multiple sessions with the parents to be able to make them understand that you have to let them go to teach them independence. And now we have a huge list of parents requesting us to check their kids internships. Yes, please get them internships. It's that's a that's a cycle, right? Parent empowerment. Right. And that the parents can trust their child to go and be independent. But yeah that's the whole caring for the whole family all at the same time. And I imagine that the parents can connect when they're in the waiting room and spending time together, and that that in itself builds community so that they get to know each other and form some strong bonds that way. Oh, it's a it's a beautiful and a very strong community. And as I mentioned, magic happens in the waiting area. Um, because, you know, whenever the session is ending, say for example, for the school readiness program, the parents, they get more sad of not being able to meet each other every day than the kids. They say, because we created such a strong bond and the beautiful friendships that they have created. They stay forever because it's a it becomes a very strong community and nothing more supportive than the same community that you are. Your kid gets engaged with. So yeah, I say magic happens in the waiting area. It's very true. We see it every day. Yes, we see it every day. Yeah. Um, I know, like it just makes me so happy to hear, like Marla said, that you have. I mean, it makes me happy in a way that you have a wait list, but obviously, it's a lot. It's being a clinic ourselves. It's very hard to manage a wait list, but it makes me really happy because the fact that there are so many kids with down syndrome, so many people with down syndrome that need services, which means that there is a shift in the cultural perception of down syndrome. People are, you know, wanting to bring these kids into the world, and that the fact that there's so many people with down syndrome, the world is a better place. So I'm so happy to hear that the indication of you needing to create so many more facilities means that that's just that many more people with down syndrome out in Pakistan, which is wonderful. Um, have you found over the last 11 years of Kdsp being around, like, what have you noticed with respect to, you know, families that are just beginning their journey with a child with down syndrome? And how are you kind of what message would you like to convey to them? Um, you know, if somebody comes to you and they've just found out that they're going to have a child with down syndrome, what? How would you, you know, help support them in that perspective? I just say one thing to all the parents and to all the people who who are related to the community with down syndrome is just send the child to in the family to kdsp and we'll take care of them. Um, the, the biggest part is and the most difficult, as I mentioned earlier, is getting the family coming to Kdsp. Um, and, and sometimes, of course, you know, um, for example, in Islamabad, I used to do a lot of sessions with the families that you've been on the Cdsp network for the longest. Why aren't you bringing your kids to the center now that we have opened? And people would have different reasons that we don't get support from our households. The mothers say nobody believes that there could be anything could be done for our kid, or they could be a contributing member of the society. People would have questioned, what would Cdsp do that you're not doing differently at home, right? But then we had to do a lot of sessions. But now that they are seeing our graduating graduates getting into the corporate world, our graduates selling stuff on, on Instagram and online, which they make families are now having that little hope that, okay, we get a lot of mothers traveling three hours one way in Islamabad alone with the child. Wow. Changing 2 or 3 public transport just to reach once they believe in in that that okay, Cds-pp is doing the right thing. Um, but, you know, on the other hand, some of the families also shared some dark experiences that they've had in therapy centers. The moment you say like, no, no, no, no therapy centers, sorry, our kid has been abused. Um, we had no idea what was happening. There were big behavior changes in our kid because of that abuse. No, we have a big no for therapy centers. And then when we tell them no, you'll be sitting. You are required to be sitting in the therapy room. And look, this child was not walking. Now this child is walking. This child was not able to talk. Now look at the conversation and the clear communication this child has because of the speech therapy, because of the physical therapy, then they kind of get convinced. So what I would say to all the families and to everybody who is linked to the communities to please send the families and kids to camp. Yeah. That's it. Yeah, I like that and we'll take care of it. Love it. Um, as we kind of end this episode, looking ahead, what are your hopes for the future of individuals with down syndrome in Pakistan? And what would you like the world to know? Somebody who, you know, people have different perceptions of other countries and how, you know, disability is viewed in other countries. Um, so it's a two parter question. What are your hopes for for people with down syndrome in Pakistan? And what would you like the world to know about Cdsp and how you're working to shift this, um, cultural perception of disability? Um, well, for the people, I would. And that's what even, um, yesterday I was discussing with my team that what else can we do to change the perception of the community of Pakistan to make People with down syndrome more included in the society, and more being able to participate in the society more. And that's what I through your podcast as well. I want to request everyone that please leave the stigma alone. And why exclude children and people with down syndrome that you have to make an effort in including them? So, you know, few years ago, the glasses Marla is wearing was a big stigma. Nobody would wear these glasses because you were being considered like, okay, your eyes are getting weaker. Um, they would compromise on their writing or their reading or live with a constant headache, but not wear glasses because of that stigma. But now there are no heads turning anymore if people are wearing glasses, right. So you don't kind of bifurcate, okay, people wearing glasses, please come sit forward and in the front row or the remaining. That's what I dream for people with down syndrome that know heads turning towards people with down syndrome. No more. Um, they can do anything and everything, of course, with certain adjustments. But then everybody needs certain kind of adjustments. But it's just that we are willing to provide adjustments to everybody else except for people with down syndrome. Why? Yeah, because even with typical people, with typical children, everybody kinds of adopt different behaviors, different techniques. Right. But why not with people with down syndrome? And, you know, of course, a few years ago you could have said because there was there is nothing for them, but now Kdsp is there. Now we want to make this change, and we want you to come with us towards making this change will be it will be hard. There are going to be challenging times, but we'll get there. But if you have the right intentions, we'll get there. But you just have to join us in making sure that we're making this place more receptive, more warm for people with down syndrome so they don't feel isolated. So though, again, even like I mentioned about, um, the colleague who who spoke about the lift, a lot of parents, the kids say we teach cooking also, right. And they make the most delicious brownie and the most delicious chowmein, I must say. Um, yesterday also, I was asking one of the chefs, I said, you, you just made this delicious jam. And do you make it at home? She says, my mother doesn't let me. Yeah, out of love and care. But how would she discover her potential if you're not letting her experiment? Right? So this is what I wanted to request everybody and to the world. I think, you know, Cds-pp has created a model where in, um, we are, we are open and we want to share this success story with the world so that, uh, people with down syndrome all over the world can be serviced with this one stop solution model that has worked, um, in Pakistan. Uh, that has worked here. Of course, we were able to, you know, kind of do a trial and error because there is no manual in this part of the world. We don't even have the right census. We don't have the right statistics, um, that those are the real challenges that we have to live with. Right. So but those should not be stopping you from moving forward and doing more and more every day for the community. Yeah. So so that's what I wanted. And I share it on every platform as well. Uh cds-pp. Um, one the zero project is Award as well last year. And when I presented in Vienna, everybody was nobody could believe that. Your therapist is giving eight sessions every day. How is that even humanly possible? And you would know that you have been hearing about this for so long. But again, that wouldn't have been possible without the element of compassion in everybody. Even if we have. Yeah, we have male therapists as well. I said, you have that motherly instinct that you deliver the therapies with. Because sometimes I would observe them giving therapies and the love and the care their body language embodies, um, compassion for these kids. So that's what I wanted to request to the world that we have created a model. Anybody who wants to replicate it, we are more than willing to help and support with that. I think it's so stunning that you started with six families and some very, very determined parents. As a support group, I think that makes it feel achievable. And what a gold star of a standard of really high bar, um, for people to try and achieve. But you can start small. I think that it's a very powerful message. Wow. Yeah. Thank you. Yeah. Thank you so much for taking the time to talk to us today. I was so excited for this episode. I've been telling everybody at my job about Cdsp when I came back from Pakistan, and and I've been working, as you mentioned, with, been collaborating with some of the OTS there over the last couple of years. Um, and it's just such a fun partnership because we are so similar, but there's so much to learn from each other. So and I and I hope that people that are listening to this episode, um, understand that, you know, the challenges and the celebrations and all the things are very similar across cultures and across countries. For people with down syndrome, a person with down syndrome in Pakistan is no different than a person with down syndrome in Canada. We all have. They all have hopes and dreams. They all have potential, endless potential. And it's just kind of how you nurture and foster it and support it. And it just I'm just so proud of all the work that you've done and continue to do. So. Thank you so much for for joining us and for sharing your story. We really appreciate it. Thank you for giving me this opportunity. Marla and Glen, I think, um, you have been a great supporter throughout. Thank you so much. I think we I hear a lot of appreciation for you for guiding the OTS throughout. And, uh, and every time I would talk to the team, um, they would say that you'll give us the next target for growth and the next target for expansion. The a lot of systems changes has happened in Cdsp over the years, but that again has been only possible support like people like yourself. So thank you so much for this opportunity and for all the support that you've extended to cdsp. We still have a long way to go. We need more support and friends on the way to make things possible here in Pakistan, and wherever we could make a difference in the lives of people with down syndrome. Perfect. Thank you so much. Thank you.