Stephanie Landis (00:06):

Hello and welcome to Unbabbled, a podcast that navigates the world of special education, communication, delays and learning differences. We are your host, Stephanie Landis and Meredith Krimmel, and we’re certified speech language pathologist who spend our days at The Parish School in Houston, helping children find their voices and connect with the world around them. In this episode, we sit down with Ali Awalla and Farzine Ali to discuss their innovative and inspiring work to support families and individuals with Down Syndrome and Karachi, Pakistan. Ali and Farzine discuss their personal journey with the diagnosis of their daughter, what led them to create the Karachi Down syndrome program in ways that is serving their community. Their story of navigating an unexpected diagnosis and figuring out step by step what life can look like for their daughter is when many families will be able to relate to. Ali and Farzine are co-founders and current directors of the Karachi Down Syndrome program. It’s a nonprofit organization in Karachi Pakistan. Launched by a group of concerned parents and passionate individuals who realized a need for a platform for those with Down syndrome due to limited support and resources available to them locally. Their mission is to advocate the value, acceptance, and inclusion of people with Down Syndrome and aim to provide them with the opportunity to lead independent and fulfilling lives.

Speaker 1 (01:23):

This very special episode was generously sponsored by the Carruth Center in Houston, Texas. The Carruth Center provides children therapeutic services to advocate their communication skills, independence, and emotional wellbeing. They offer individual speech, occupational, physical, music and play therapy sessions. They also offer group classes for young children with language delays, as well as groups for school-aged children who would benefit from the social thinking methodologies. If you would like to find out more, visit the Carruth Center’s website@www.carruthcenter.org. The Carruth Center is proud of their relationship with the Karachi Down Syndrome program, and we hope you enjoy listening to Ali and Farzine Allawalla. Welcome! We’re excited today to have two guests who are here in Houston live from Pakistan joining us, and I believe you’re probably our first international guest. So welcome. We’re so excited to have you. We have today Farzine and Ali Allawalla, and they’re here from the Karachi Down Syndrome project. So I’m excited to hear your story and share it with our families.

Speaker 2 (02:30):

Sure. We’re happy to be here. Thank you for having us. I think we can start off with how it all began. Great.

Speaker 1 (02:36):

Yeah. Best to start at the beginning, right, <laugh>.

Speaker 2 (02:38):

So this is about 11 years ago, a little over 11 years ago. Um, we had our first born, uh, her name is Aleah, and she was born with Down Syndrome, and this was in Karachi, Pakistan where she was born. And we didn’t know before her birth that this was going to be her diagnosis. Um, and when she was born, it was, um, it hit hard. There’s a lot of, there used to be, uh, I should say a lot of stigma attached to any kind of disability in our society. And it was, it was difficult to accept the diagnosis at first, and also because many people would not talk about, of course, there are children with disabilities everywhere, but, uh, back then people would just, you know, kind of hide the diagnosis or even hide their children. So that’s where it all began. And, um, so Aleah was pretty unwell when she was born.

Speaker 2 (03:36):

She was premature and she had to spend a month in the NICU. And after we got out, we kind of realized, you know, we don’t have a roadmap at all. There was nobody to guide us as to, you know, what, we need to look out for, where we should go. Are there any experts? So we started reaching out to a couple of parents who we got to know by word of mouth that, you know, they also had kids with Down Syndrome. And it was, it was a very bleak, you know, picture that was given to us. Um, you know, not too many happy stories. And anyway, so that was pretty much the first, nearly the first year of Aleah’s Life. And, um, then we found out about the Boston Children’s Program here in the US because we, you know, tried to look out for resources, um, all over the world, and it, it was apparently one of the best programs as far as Down Syndrome was concerned.

Speaker 2 (04:30):

So we decided to make the journey and come all the way to the US And this is a story that we, we tell everyone that, um, as soon as we entered, um, the Boston Children’s, uh, Down Syndrome program, the person at the front desk was a gentleman who has, who has Down Syndrome. And he was handing out the, the, you know, the, the forms that you’re supposed to fill out. And we were like, What? You know, this is something so unlike what we have been told for the past 12 months, um, that people with Down Syndrome, you know, they’re basically supposed to be a burden on you for the rest of your lives. And, you know, which is why the reactions that we got at the time of Aleah’s birth were the way they were because, you know, everyone was like, Oh, we’re so sorry, and, you know, Oh, don’t tell anyone, you know, she’ll be fine, whatever.

Speaker 2 (05:21):

You know, kind of like telling us to hide it and not really, you know, be open about the fact that that was her diagnosis. So we were very pleasantly surprised to see this gentleman going about his daily routine, like in such a happy go lucky way. And that, I think was a huge perspective shift for us. Um, kind of realizing that, hey, you know, every person has so much potential, we just have to kind of, you know, kind of help them develop it and get them there. And that was the inspiration. So when we got back to Karachi, we were like, Okay, we gotta change things around here. And I think we were in a very privileged place in the sense that we had the resources to travel. We were educated, We had, we had friends and people in the right places who could kind of, you know, gather resources for us. So basically the stars were aligned and we decided, okay, okay, so let’s focus on Aleah for the first two, three years of her life, because that’s prob you know, the early intervention period, which is super important. Um, and then we’ll kind of, you know, try and do something bigger for everyone else. And that’s, that was basically the seed of the Karachi Down syndrome program and how it all began.

Speaker 1 (06:37):

That’s an amazing story. So how did you end up finding resources in your city in Pakistan?

Speaker 3 (06:44):

So, I mean, resources were very limited. Like Farzine said, we were able to connect with a few families who had kiddos with Down Syndrome. We were able to learn through their journeys. But a big part of the struggle was, uh, which K D S P now addresses was, um, you know, we had people, friends, well wishers who would come, and in all with all good intentions, they would, um, give us tips. So, for example, somebody would come and say, Oh, I’ve heard, you know, kids with Down syndrome can have some sort of a heart related issue. So, uh, you know, make sure you watch out for that. Uh, somebody would say, Oh, I’ve heard that, uh, they can have a hearing issue, so watch out for that. Somebody would say, Oh, I’ve heard that, that they can’t really go to a regular school. So you might wanna plan for that as young parents who have recently been delivered that diagnosis, and they’re looking to find the best care for their child.

Speaker 3 (07:46):

And also, I mean, understand what Down Syndrome is. What does it mean to have a life with Down syndrome? How’s it gonna impact our daughter’s future? And to hear these kind of questions and then to not have the solutions available, Right? So I mean, if somebody says, Watch out for education, and there’s no inclusion in mainstream schools, what do you do? Or if somebody says, Hey, look out for the heart and you don’t have a good set up for pediatric cardiologist, what do you do? Um, right. I mean, it was, it was a lot of struggle in terms of getting the whole plan together. And with time, we learned from coming to the US and going to places like the Boston Children’s, at the Texas Children’s Hospital and their Down syndrome programs and meeting with amazing people, therapists, educators here in the us. And we understood somewhat what was needed in Pakistan.

Speaker 3 (08:43):

Because remember, in the US still, you have, So for example, if you have a therapy practice, uh, that’s, there are many practices and many physical therapists, occupational therapists, speech therapists, uh, and, and working in clinics that are ready to help kiddo with different diagnosis of different disabilities. But in Pakistan, uh, you don’t, we didn’t have that many of, um, you know, quality that we were now used to after coming to the US. So now at KDSP what what we do is that this organization is now a OneStop solution for anybody that has anything to do with Down Syndrome. So we actually, where, where, where we started from literally just a support group of seven families. We are now almost at 1500 families that we are directly serving and many others that we are indirectly impacting. But the organization being a one stop shop is, so the, so when the families first come to us, we introduce them, uh, we, we, we have a process with them called a Family First Contact, which is their first interaction with us.

Speaker 3 (09:52):

Um, and we understand their needs and expectations, and we tell them everything that we have to offer. And based on that conversation, we developed a cu develop a custom care plan for that family and for that child. And we tell them. So the little story is that we tell them that we are in a, uh, in a boat with you together. And a boat in, in OU is called a Kashti, right? Spells in English, K A S H T I. And we tell them we are in a boat with you together. And like a boat will go through the waters, in the waters, and in the waters you will sometimes find choppy waters, which implies challenging, difficult times. And then there will be calmer seas, which means it’ll be pretty normal, pretty okay. But the important thing is that we are in this boat together, and this boat, the, the word kashti, the six letters actually, uh, are each of our areas of service.

Speaker 3 (10:46):

Um, so, uh, I mean, K, actually in order do is Hanani Sahara, which is, uh, which, which is actually the same as family support services. So we’ve got various family support initiatives, informational, emotional and financial support for families, um, of children with Down syndrome. Then the A in Kashti stands for Awareness Raising Initiative. So we do a lot of awareness raising work, um, because unless the community around around us understands what Down syndrome is, understands what kids with Down syndrome need, um, you can’t really function. We can’t really function in a bubble, right? We have to function in kind of sync with the community. And then s in, or stands for Seth, which is healthcare. Uh, so we work, we are not a hospital, we are down syndrome organization, but we partner with healthcare organizations in our city, and we’ve set up down syndrome healthcare clinics.

Speaker 3 (11:39):

So now the concern that we were given, take care of your, of heart issues, take care of hearing issues, no family has to take care of them. They just have to come to us. We connect them with the hospital, and that clinic takes care of their, all of their healthcare issues. So now that stress is gone, t stands for thalem, which is education. Uh, so all of our education related work. So we, uh, we power initiatives for inclusive education in the country, partner with mainstream schools. Um, because remember in Pakistan, um, pretty much all of education is privatized. The public education system is pretty weak. So we have to rely on partnering with private schools. We train their teachers, um, and provide them with other facilities that they need to get these kiddos into mainstream schools. We have our own preschool that runs in-house. We have an afterschool remedial program.

Speaker 3 (12:33):

We have a remote education learning program for kiddos that are outside our city or can’t have physical access to us. Um, and then we’ve got an entire program on vocational training and skill building for grownups with Down syndrome. And then we’ve got an entire early childhood intervention program that offers speech, occupational and physical therapy over 450 sessions of therapy every week at our facility. So we’ve got a couple of dozen therapists that work at KDSP. So I mean, if you, if you just kind of go through all of these areas, it has really become a OneStop shop, right? Because if you, whatever needs your child has with Down Syndrome, you come to us and we will find a way to address it, either in house or through one of our partners working in the city.

Speaker 4 (13:21):

So the first few years you guys were here in the us, um, getting services and gathering information, is that kind of where you gathered all the resources? If there weren’t many in Pakistan, did you use a lot here in the US to kind of help launch your program over there?

Speaker 3 (13:36):

We’ve always traveled back and forth. We never stayed for an extended period here in the US but in terms of resources, um, a lot of it was inspirations. And thankfully, you know, by the time Aleah was born, we are, we live in an interconnected world, right? Uh, so you don’t have to be physically present in a space to get those resources. So we were able to communicate and learn a lot. We were able to get people, uh, from the US and the UK to train our people, um, back home. And then, I mean, there were plenty of people who were train there training facilities there, don’t get me wrong. But, you know, that under specific understanding regarding Down Syndrome, uh, was what was missing. So I’ll give you an example. Um, I won’t go into the exact detail, but in one of the physical therapy sessions that our daughter was getting back home when she was not even two years old, the method of, um, trying to address a concern regarding her and to help her, the, the method was more rehabilitative, right?

Speaker 3 (14:50):

So when a person with Down Syndrome needs early childhood intervention therapy, it’s more rehabilitation, it’s more, uh, facilitating them getting to that goal faster, um, so that they can be a part of mainstream society. But that understanding wasn’t there. So it was being viewed as an injury that they’re recovering from, and the methods that were being used were not appropriate. So it was that understanding about Down Syndrome that was missing. The training was there, so we just had to tweak that a little bit. And once we got all of these programs running, one after the other, that awareness started to come. We got some amazing Pakistani people who were working actually in the US in major hospitals, um, like the Mayo Clinic come back, uh, to Pakistan. So they were young doctors with a completely different perspective. Uh, so they helped us a lot with, with our mission. And then everything just start falling into place.

Speaker 1 (15:47):

That’s, So one of the things we hear from parents when they get to The Parish School here on campus is that they feel like they are surrounded by people who understand, like other parents who understand and they have that connectedness aspect. It sounds like that was something that was difficult for you guys to find it first, and that you’ve worked hard to build. How did you build that?

Speaker 2 (16:11):

Right? Yes. Uh, very much so. I think, um, the first six months I would say were, were pretty dark. We were in a pretty dark space. But then again, I would say technology really helped. I think, uh, for me personally, coming out of that mental space where I was just feeling, I would say like much like a victim, right? It was like, you know, just overcome by shame and embarrassment and having born this child. And it was more because that was the messages that were subconsciously or unconsciously being given to me by society. But I, um, obviously started reading up and came across these really cool blogs that were, you know, bio moms of parents with Down syndrome here in the US and that gave me a lot of strength and courage. Okay, hey, you know, it’s not all that bad. And then obviously I found the strength to keep reaching out to people until I found a few who I could connect to, um, emotionally.

Speaker 2 (17:10):

Um, and I think the time when we started, when that community really came together was, um, the day. So we launched KDSP on, uh, World Down Syndrome Day on March 21st, um, in 2014. And we launched it with this photo campaign that we had come up with, um, basically normalizing, uh, you know, the relationship that you have with a person with Down Syndrome in your family. So the photo camp, it was a photo campaign and we had put it up on billboards across the city. Um, so basically it was like, you know, uh, a father and a daughter with Down Syndrome and they’re just hanging out together, or a brother with a sister with Down Syndrome. So it was just like really sweet pictures and we just wanted to put them up so that, you know, it would just normalized stuff. And that was, that was what opened the floodgates.

Speaker 2 (18:02):

I feel like there were so many people who were just waiting for an opportunity like that, right? And to kind of say, okay, because when you kind of know a person with Down Syndrome and you love a person with Down Syndrome, you know what they’re capable of. And the relationship is just like any other, with a person that you love. And I think that, so we had put up a phone number on those billboards and know those on, on those pictures, and the calls started pouring in and they’re like, you know, where are you guys? What do you do? You know, we have a person with Down Syndrome in our family and we love them, and you know, they’re great and they’re fantastic and, you know, how can we come together? And that’s what got the ball rolling. And it was literally just, it was automatic. Everyone just started coming together to our support groups and to our, you know, family meetings. And that’s where it all began. So I think it was just everyone just needed that one person or one, you know, one group to kind of get started and everyone joined the bandwagon.

Speaker 3 (19:05):

Yeah, and I think, um, for us personally, uh, where we really got the support going was, um, when we started talking about Down Syndrome. So when Aleah was born, even from the closest of family where, you know, we had amazing, uh, support from our families, both sides, but, uh, we were still getting a lot of input from, from close ones to not talk about Down Syndrome or to not talk about Aleah’s diagnosis, because where we had their support, they still didn’t really understand. So then their perspective was, Oh, she’s gonna be, she’ll become okay. And we already knew that she’s not broken, she doesn’t need to be fixed, She’s already, okay. So what we did was we, we went 180 degrees and all we did was start talking about Down Syndrome. And what that did was it broke the ice amongst people around us. Our friends, I’ve had so many of our friends come to us and say, We are so glad you initiated the conversation, because we just didn’t know how to approach it.

Speaker 3 (20:12):

We didn’t wanna be insensitive, we didn’t wanna say anything insensitive, but because you brought it up, we not only became comfortable, but we understood about Down Syndrome. Um, so it was little things that, you know, this we did personally. It really kind of brought around a community of supporters, of friends and well wishes around us. And then within our community, we have this, uh, event, uh, that we call the KDSP Carnival. We’ve had seven of these carnivals now. And basically this is one of the events, part of our awareness raising initiatives. And the last one was around World Down Syndrome Day. This year it was attended by around six and a half thousand people. And it started, the first carnival seven years ago was attended by 1200 people. So it grows every year. And it’s essentially, it’s a regular carnival with music, fun games, food, but it’s attended by not only kiddos with Down syndrome and their families, but by regular society, by families of Ty Neurotypical children.

Speaker 3 (21:22):

And what happens is understanding about Down Syndrome has changed, because previously it was like almost all special needs were clubbed in together. Um, but now their specific understanding around Down Syndrome, because kiddos with Down syndrome are generally very social, very loving, very expressive. Um, and so now families are coming together and, uh, hanging out with these individuals and their families and realizing that they’re not much different from us. And yes, they might take that little bit of extra time, Sure, they might approach something a little differently. Um, they might have expressions that are different, but how does that make it a problem? Where’s the issue here? And so learning how to coexist with people of different abilities is something that has really picked up in our community because of the work that KDSP has been doing.

Speaker 1 (22:14):

That’s amazing. Have you noticed from parents that have started the program in the past few years compared to when they first started, that they’re feeling a difference when they get the diagnosis then maybe you guys felt over 10 years ago?

Speaker 3 (22:31):

Yeah, so I mean, absolutely. It’s very different. So the, the, I mean, I can’t tell you when we used to have our early family support group sessions, cuz that was the first thing that we did when we started KDSP before even working with the children, the first thing we did was get the parents to be powerful ambassadors for their children. Because unless the parents are ready to fight, KDSP or any other organization can do nothing. Um, so I wish I could describe the, the vulnerability and how scared parents used to be, uh, in the early years. Um, because they were always made to feel such shame and guilt that they would hide their children. All of a sudden there was this organization that was trying to empower them, but they, they had never experienced it, right? And today these parents are unbelievable ambassadors for not only their children, but we actually have another program within our family support initiatives.

Speaker 3 (23:37):

It’s called the Hamrahe Program, which is essentially, uh, we have trained, um, parents of children with Down syndrome who are slightly older, uh, to become mentors to parents of children who are younger. So they’re like counselors, mentors, they’re available a phone call away at any point in time. We’ve tagged families together, so they’ve kind of become support system for each other. And then also when we launched, so you talked about delivering of the diagnosis, Dr. Brian Scott, who is the head of the Down Syndrome program at Massachusetts General Hospital. He’s a dear friend. And when we started, uh, when we launched our first Down syndrome healthcare clinic in the largest private hospital in the city, um, we actually, the, the, the entire program centered around his lecture, uh, sitting in Boston. And the topic was how to deliver a Down syndrome diagnosis, because that is something that we really struggled with when we got our diagnosis. And, um, we gathered all the healthcare providers. Uh, and, and you know, it, it’s kind of conversations like this that has really changed, uh, from a doctor meeting a parent, uh, or after the child has been born and saying, I’m really sorry, which used to happen 10 years ago to now coming and saying congratulations, Uh, uh, and that, that shift has been because of these initiatives that, that have happened over the past eight years.

Speaker 4 (25:12):

Have you noticed, um, over the past eight years since you started the foundation, that other people are following your lead? Are there other, um, programs or projects happening either in Pakistan or other countries to help children with other diagnoses in their families or, um, help children with Down syndrome in other countries? Have you seen it? Have you guys inspired any of that?

Speaker 2 (25:33):

Well, I’m not sure if there has been a direct inspiration, but there have been many programs. I know there’s one in Bangladesh. Um, and the founders of that program really reached out to us and, you know, for guidance and they asked us, you know, how did you go about doing stuff? Um, and we told them about our journey. Um, there have been programs in other cities in Pakistan that have cropped up, uh, so one in Pishava and there’s one now in Islam that we are helping out with. Um, so yeah, I think, uh, there has been somewhat of an impact. It’s been nice. Yeah,

Speaker 4 (26:07):

It’s amazing.

Speaker 3 (26:08):

Yeah. Yeah, there has even been, uh, there’s a, there’s a down syndrome organization in Ethiopia that we have recently provided trainings to, um, because they reached out to us and it was so amazing for us to be recognized as an organization working out of Pakistan that is helping communities internationally. Um, and like Farzine said, so the, one of the ways we set up KDSP was, um, I mean we are now in the process of going nationwide, uh, and we intend to have chapters in the major cities, but when we, we set up, we set it up in a way that we would inspire families like us to start local support groups because we are a unique organization. Um, because the kind of one stop shop that we’ve set up is not an easy thing to do, and it’s a very complex setup, but that’s not easy for everybody to do. So essentially we inspire families across, across the country to set up support groups and grow organically like we did. And we do have a, a program whereby we train these small organizations, um, to understand how they can grow in a, in a structured manner or kind of understand our growth journey.

Speaker 4 (27:26):

So if I’m doing the math right, and math is not my strength, but Aleah was three about when you launched this project. So it’s from three years from your diagnosis to starting a program to help families in your community. How did you even start that? What was your first step when you realized it was needed?

Speaker 2 (27:44):

So I would say I, so like I’d mentioned before, I would say the first year was pretty difficult. Um, I think emotionally, mentally, um, it was more like, you know, I think there was, I don’t know about, well, I do know about Ali, but for me personally, it was, there was a lot of resistance kind of accepting the diagnosis initially. Um,

Speaker 2 (28:10):

But, uh, I feel like the fact that we did open up to people and did talk about, you know, the challenges that we were facing, that really helped in our own healing and kind of accepting, and also I think just our own connection with our daughter and realizing, hey, you know, she’s just like any other baby and she’s so cute and cuddly and squishy. Um, that, that, that connection with her obviously cemented things further. The first thing that we started off with was, uh, reaching out to other people who we knew other parents, um, and setting up, um, regular meetings with them. Um, and just to get that kind of community feel going, because obviously there’s strength in numbers and we would kind of, you know, pick off on each other’s strengths and kind of build from there. And slowly, you know, kind of realizing that, you know, a formal platform is needed for all of the things that we want to do.

Speaker 2 (29:06):

Um, and the Carnival was one of the first things that we came up with that, you know, this is something that we need, we need to kind of change the perspective of how Down Syndrome is viewed in our society. And instead of it being something sad and something, you know, you know, not, you know, being awkward to talk about, it should be a celebration, which is why we picked 21st March, the World Down Syndrome Day as the launching day for our campaign. Um, but gathering the resources, I feel like, you know, we, we had a lot of supportive friends and family. Uh, we are, we both, uh, went to business schools, which meant that we had friends who were in all the right places as far as, you know, they were placed in, uh, they were MNC so they, they could kind of, you know, sponsor our programs also. So that really helped. Um, so yeah, that’s, it was very, it, it wasn’t something that was so planned out initially. I think it just kind of kept falling in our lap, cahe, you know, why don’t you do this event? Or why don’t you come and talk here and, you know, have this meeting, Our school is open, why don’t you have family support groups here? Um, so yeah, that’s how it all started coming together.

Speaker 3 (30:19):

So I’m just gonna just like to add to that. So the, the growth was very organic cuz we didn’t know where we are today. We didn’t know on the first day that this was the plan. So like I said, first thing, connect with families before the kiddos. So we start the family support group session. So an expert comes in, We, we, we, um, borrowed space from within, uh, a friend, a friend who owned a school. So we used to sit in their multimedia room, uh, have a conversation, get an expert there. Uh, and the expert could be somebody on stress management. The expert could be somebody on who knows about physical therapy, occupational therapy, speech therapy, a cardiologist and uh, an ENT, a nutritionist. Uh, and they would just come and they would talk about their area of expertise. So, and, and relevance to Down syndrome, we would, families would understand that.

Speaker 3 (31:07):

And then those support groups would also give the opportunity for families to connect with other families. Because remember, KDSP as an organization can’t be the solution for everything. Families have to connect with families so that they, and then their children can develop social relationships. And so that was the starting platform. Then the next was raising awareness within the community, even again, before we touched the kiddos, um, once we started our awareness raising work, we were like, we were going to schools. We published a children’s book that is, that is currently taught in mainstream schools. It’s a story about a girl with Down syndrome and a friend and, and how, uh, you know, first half of the book, they are just regular friends hanging out. And then in the middle of the book, the friend who doesn’t have Down syndrome overhears that her friend has this Down syndrome, this condition, uh, and she gets very upset.

Speaker 3 (31:55):

And then a mom kind of explains, and then it transitions out into understanding about the condition and normalizing it and realizing that kiddos with Down syndrome are very similar, doesn’t really matter if what their diagnosis is. Uh, so doing awareness rating, stuff like that. Then we said, Okay, now what’s the most important thing in the life of children with Down syndrome? So, I mean, all of these things are important education, vocational training on healthcare and all of that. But we’ve said, we said, Okay, let’s focus on early childhood intervention, because if you build a strong foundation, then the journey onward will become easier. So we started, our first, uh, clinic was an occupational therapy clinic with one therapist. Um, so we got a small space, we had a small office. Uh, and then, then from occupational therapy, the next clinic we set up was a physical therapy clinic.

Speaker 3 (32:42):

Then the next clinic we set up was a speech therapy clinic. Um, and so we had our early childhood inter inter intervention program kind of in place. Um, and then the same kiddos that were coming to us for early childhood intervention, um, they said, Okay, you guys say, um, mainstreaming is the way to go for arch kiddos, but no schools are really ex accepting us. As soon as we go and we say our child has down syndrome, they say, Sorry, no admissions available. So then Farzine and I started going to some of the major schools in the city and we started having a conversation with them. We said, we, this is what the science is, this is what research suggests. These kiddos need to be in regular schools. What is the problem? Why can’t you accept them? And so some schools would be like, um, you know, they would make an excuses.

Speaker 3 (33:32):

So we, we understood that they weren’t in the right place. And then some schools would say, Absolutely, we agree with what you’re saying. We just don’t have the resources, we don’t have the understanding. So that’s where we came in and we said, Okay, we’ll train your teachers. We’ll get this going. No cost, no money implication for you. Let’s get this started. So we got those programs for education started, and then the education programs grew. And then, you know, one day this group of moms, because we were focusing all on the younger lot, um, because like I said, you work on the foundation and the journey onward becomes easier. But there was this group of moms, of older kids with Down syndrome, you know, 15 and above who came to us and they said, You’re doing everything for the younger kids. What are you doing for our children?

Speaker 3 (34:17):

Cause now you are the Down syndrome organization, so the onus is on you. And we really didn’t know what to do, but we had this great woman who, uh, who did a lot of making handycrafts and she said, I wanna work with these kids. And I was personally, I was thinking, this is impossible. All of those kids were non-verbal. Um, they had, they did not know how to sign a signing was an alien concept in Pakistan back then for kiddos with Down syndrome. Uh, and I just didn’t know how, and they couldn’t even hold a needle. How would they learn handycrafts and how to make them? And she said, No, I’m gonna do it. And she started working with these kids, and it was as we were learning along the journey that kiddos with Down syndrome have a far greater receptive language, then they have an expressive language, right?

Speaker 3 (35:03):

So they were understanding everything, They just weren’t able to communicate it in the same way. And when that lady started working with these kids, they started making these amazing products that to date we sell on their behalf, and a hundred percent of the proceeds go to them. So all of a sudden from being supposed burdens on their families, they’re now income generators for their families. It’s a, it’s an amazing feeling where you see these kids getting their monthly, uh, kind of envelope of money that they’ve earned through the sale of the products that they have made. And then along the way, somewhere, you know, we set up the Down Syndrome healthcare clinic because again, for healthcare, where you go, you go to hospitals, um, you’re scattered around. Uh, and it was a re I mean, as it is to get, just generally just get kids into hospitals for appointments is such a challenge.

Speaker 3 (35:51):

But the concepts of having annual developmental evaluations and getting a, a, a kind of connected team of doctors together to oversee the healthcare of kiddos with Down syndrome, to be one step ahead of the curve, uh, to make sure that, you know, they don’t fall sick or developmentally they’re growing well, or the fact that they’re hearing is okay, they’re hearing well, their eyesight is okay, they’re seeing well because if the senses aren’t working properly, how can we expect them to learn? And that was happening a lot in Pakistan because we were hearing stuff like, if a child isn’t doing so well, the general comment would be, Oh, that’s because he or she has down syndrome. But it wasn’t, it was because that child had fluid in their ears and all they needed was ear tubes. And they would hear and they would learn, or the fact that the child had, uh, needed, uh, help with their eyesight and all they needed was glasses and they would see better and then they would learn. Um, so, you know, kind of plugging all of these services in one by one is actually improving the quality of life of individuals with Down Syndrome. And as a result, they’re learning better, they’re communicating better, um, and they’re generally doing better.

Speaker 1 (37:02):

So as your daughter is getting older, have you seen her trajectory change dramatically from what they gave you as a bleak outlook? Do you have, are you kind of like building it as you go of like, every time we get a little older we’re like, Oh, things are changing and now we can support this. Like, how are you then projecting to continue to support your daughter’s amazing progress and different life outcome?

Speaker 3 (37:29):

So I’ll just give you that little bit of background. When Farzine told you about that early experience that we had when Aleah was born, Aleah was actually when she was born premature. And she, um, she was placed in a regular nursery with 20 other newborns. And, uh, nine hours after her birth, she had a cardiac arrest and she was gone for a minute and she had to be resuscitated and put on a vent for 10 days. And during that time, um, the outlook given to us, and these are the words of a, of a, of a pretty qualified doctor back in, back in Pakistan. And I don’t blame him, it’s just that it was his lack of understanding and awareness. But his words to me were, when Aleah was fighting for her life on the vent, and so were we, his words to me were, Don’t fight too hard for her life because if she survives, her life will be very difficult and so will yours. So let her go.

Speaker 3 (38:28):

So that is the place that we were coming from, um, where we had actually believed we were made to believe like it’s better if she goes and, but Aleah has this amazing quality of whenever everybody gives up hope on her, she’ll fight back. So when she was in the hospital, and she’s done this a few times in her life, but when she was in the hospital in those early days and she had these infections and every combination of antibiotics was given to her and they weren’t going away, and the, the, the head of the NICU basically said to us, It’s now on her. And everybody gave up hope on her and she fought back. And those miraculously those infections went away and we were able to go home. But then we would hear stuff like, Oh, she’s not gonna talk. She may walk, she’s gonna walk late, This, that and the other.

Speaker 3 (39:19):

You know, all these bleak scenarios. And thankfully, thankfully, when we were able to come here, I mean, so when, when in the early days we were told by one of the doctors when we heard about this speech therapy and what it is and how kiddos would Down Syndrome should get it. And one of the doctors said, Oh, she, she think about speech therapy when she starts talking. That’s speech therapy, right? And then we came here, <laugh>, we found out that speech is not about talking, it’s about communication. It’s about activating the muscles in your mouth. It’s about, it’s about, and then there was this, there was a speech therapist that we connected with back home who said, so we were told here, when we went to Boston, we were told that there’s this amazing, um, sign language, uh, you know, kind of resources available. And it’s so funny because we were given those American sign language, um, uh, resources that are developed by, uh, Rachel Coleman from signing time.

Speaker 3 (40:19):

Um, and we would, when we and Rachel, um, it’s an amazing story because Rachel is now a dear friend of ours. And Aleah was actually featured in one of her shows. But when we went back home and we met with one of the speech therapists back home, she said, If you’re gonna do signing, we are now gonna work with your child, because that means your child’s always gonna be dependent on signing and they won’t talk. So, uh, we came back and gave this feedback and the doc and, and the people in here kind of laughed it off saying, Oh yeah, that is 30 year old research. Um, now we have all the research to prove that signing actually facilitates speech. So amazingly when Aleah was three years old, cuz Aleah has moderate hypotonia, and when Aleah was three years old, Aleah had a verbal vocabulary of a dozen words.

Speaker 3 (41:12):

That was it. But she had a signing vocabulary of up to a thousand words. So she never really faced those behavioral issues. You know, when she wanted water, she would just sign Mama Water. When she wanted to go to the bathroom, she would just sign Baba bathroom, right? And so imagine if a person has these basic needs and they can’t communicate. I mean, if I, if I want water and I can’t get it, I would just go bang my head into the wall, right? Cuz I mean, it’s something so basic. So Aleah, as a result, uh, did not have those behavioral concerns, was able to communicate from her early days, uh, Farzine learned sign, I learned sign Aleah, learned sign, um, thanks to Rachel’s amazing American sign language resources and, and no behavioral concerns. So, um, so for Aleah, the early perceptions that we had and the, the news that we were given was the, the bleak picture and how she and her journey is now this beacon of hope for so many families.

Speaker 3 (42:22):

I mean, it was her birth and her coming to this world, um, that led to KDSP being set up and helping this many families, because I personally, Farzine still knew. I did not even know what Down syndrome was when Aleah was born. And I mean, I belonged. I I, I had good education. I had lived in, in London for two years, got my education from there, I traveled the world. I had no clue. And so, coming from that place to where we are now and how well Aleah is doing in pretty much every area of her life, she goes to a regular school. She has friends who are typically developing individuals. She’s loved by the people around her. She adds so much of value. Um, and it’s funny because, you know, we’ve had these conversations with people sometimes and about whether, if we had the choice again, would we want Aleah or not?

Speaker 3 (43:25):

And people think it’s a defense mechanism, and you know, we say that we would a hundred percent have her again. But honestly, there is nothing about this journey that we would change. Um, it has had its challenges, It has has had its hospital visits and struggles with schools and education, everything. But who doesn’t wanna struggle for anything if there is a big reward at the end? And with Aleah and her journey and every milestone that he, she has accomplished, the reward has been so high that, um, it has just been a privilege to go through every step of that journey with her.

Speaker 1 (44:10):

That’s amazing. And you’re that question, it drives me crazy. Nobody walks up to somebody who they think their child is typically developing and was like, Would you have your child again? Or would you pick a different one? And it’s like, so why <laugh>? Like, and

Speaker 3 (44:26):

They ask, but you know, I’m glad, I’m glad that these questions are asked because you know what, all these difficult questions and sometimes inappropriate questions, open up avenues for amazing conversations and changing perceptions. That is very true. Um, so that’s how we view it. We invite literally every kind of comment and question because we can, we are confident that we can always turn it around into something that can change perceptions and create more awareness.

Speaker 4 (44:53):

That’s a great outlook on a hard question. Well,

Speaker 1 (44:56):

Thank you so much. I have learned so much and I’ve really enjoyed speaking with you.

Speaker 4 (45:01):

If people wanna find you guys online, um, we’re gonna include this in our show notes as well, but what, um, what’s the best way for them to find you?

Speaker 2 (45:09):

So we have a website, uh, www.kdsp.org.pk. Um, we are also very active on social media, so we have a Facebook page by the same name, Karachi Down Syndrome program. We’re on Instagram by the same name. Um, so yeah, we can, we’re very accessible. You can reach out to us anytime. Awesome.

Speaker 1 (45:30):

Perfect. At the end of the podcast, we ask all of our guests if they had one piece of advice, and it can be on this topic or it can be as simple as like, listen to your mom or eat your broccoli. Um, if you had one piece of advice to give our listeners, what would it be?

Speaker 3 (45:46):

Take your journey one step at a time. That’s been our mantra, um, since we’ve had our kids because life in its totality can be extremely overwhelming. Um, but it not, it is not if you, if you take it one step at a time, one day at a time, don’t think too far into the future. We’ve had people ask us, Oh, is Aleah gonna get married? Uh, <laugh>. And we laugh it off because you’re like, What? That’s so far ahead into the future. Maybe it’ll happen, maybe it won’t happen. Who cares right now? Right now we are focused on what she needs right now and what we need right now for her. So take your journey one step at a time. Um, having children who have different abilities is, is a blessing. It’s an amazing opportunity to have this unique lens on life, how to value things, how to prioritize the way you lead life. And, um, if we learned, uh, the sooner we learned, accept it, and then to truly embrace it, um, the better off we are.

Speaker 1 (46:50):

That’s beautiful. Yeah. Do you wanna add anything?

Speaker 2 (46:54):

No, I would say, yeah, that has been pretty much the way we’ve lived our lives so far. One day at a time. I, the first time we came to Boston, I bought, I don’t know which shop it was, and I got this little magnet that said One Day at a time. And it’s been on our fridge since then. And, uh, it’s something that we really practice or we try and practice every single day, um, because there have been many situations that have been super overwhelming, but when you break it down and you’re like, Okay, just focus on what’s happening right now and then we’ll see whatever happens later, we’ll take it. Um, so yeah, that’s, it’s been pretty comforting.

Speaker 4 (47:32):

Good advice for everyone.

Speaker 1 (47:34):

Well, thank you so much. We really appreciate you taking your time and being with us

Speaker 4 (47:38):

Today. Yeah. Thank you guys.

Speaker 2 (47:39):

Thank you so much. Thank

Speaker 3 (47:41):

You for having us. It was a real pleasure.

Speaker 4 (47:47):

Thank you for listening to the Unbabbled podcast. For more information on today’s episode, please see our episode description. For more information on the Parish School, visit parishschool.org. And if you’re not already, don’t forget to subscribe to the Unbabbled Podcast on your app of choice. And if you like what you’re hearing, be sure to leave a rating and review. A special thank you to Stig Daniels, Andy Williams, Lesley Hawley and Molly Weisselberg for all their hard work behind the scenes. Thanks again for listening.