166 – Dr. Taruj Ali – Father of Three & A Pulmonologist Reflects On Raising A Son With Severe Autism

Transcript:

Tom Couch: Special, thanks to horizon therapeutics for sponsoring today’s special father’s network, dad to dad podcast, working tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about horizon therapeutics, mission at horizon therapeutics .com

Taruj Ali: know, don’t be afraid to approach someone and offer help. If you can, when you look at a child who let’s say, you know, you’re traveling and you look at a child having a temper tantrum, if you want to call it and you can see on their parents’ faces, how uncomfortable they are, you know, if you just look at them and you give them a genuine smile, that goes a long way, you know, to just say that I get it.

I understand. It’s okay. We’ll get through this, you know, just, you know, be better human beings.

Tom Couch: That’s our guests this week to our Rouge Ali, a physician, a pulmonologist, and a father of three, including Donnish age 20, who has severe autism and is not. We’ll hear the Lee family story and how they’ve worked together to help Donnish live a happy and satisfying life.

That’s all in this special father’s network. Dad to dad podcast say hello to David Hirsch. Hi,

David Hirsch: and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special. Presented by the special fathers network.

Tom Couch: This special father’s network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.

It’s a great way for dads to support dads. To find out more, go to 21st century dads.org.

David Hirsch: And if your dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad

Tom Couch: so now let’s hear this intriguing conversation between tar uj Ali and David Hirsch.

David Hirsch: I am thrilled to be talking today with taruj Ali of Richmond, Virginia. Who’s the father of three and a pulmonologist to taruj thank you for taking the time to do a podcast interview for the special father’s network.

Taruj Ali: Thanks David. Thanks for having me glad to do this.

David Hirsch: You and your wife have been married for 21 years and the proud parents of three children, Honsa 13, Hommel 17, and Daanish 20, who has severe autism and has not.

Let’s start with some background. Where did you grow up? Tell me something about your family.

Taruj Ali: Hey David, thanks again for having me. So I was born in India, in a city called Hyderabad, which is south central India. I actually spent quite a large part of my childhood in the middle east, in Abu Dhabi to be specific in the United Arab Emirates where my dad was working as an architect.

So my schooling, you know, right from elementary school up to high school was actually in Abu Dhabi. And then I came back to India to have robot to do my. Higher secondary education, you know, 11th and 12th grade, and then went to medical school in Hyderabad. So that’s where I’m from. And I’ve been in the U S since 1999.

David Hirsch: Okay. And did I remember that you have a couple of younger siblings?

Taruj Ali: Yeah, so I have two sisters. Um, Maria is my, uh, second in line. And then, um, you know, who’s our youngest. So I have two sisters. One is in Richmond where I am and our youngest sister is in California, in LA. Okay.

David Hirsch: And from what I remember, you telling me your parents are in the U S now as well.

Taruj Ali: Yes. They’re not in the U S uh, they immigrated to the U S I think it’s been good part of 10 years or maybe longer. And they actually live with us and it’s been an immense help. So they live with us in Richmond. Excellent.

David Hirsch: What did your dad do for a living. So

Taruj Ali: my dad was an architect and. You know, he went to his architectural school in Hyderabad in India, and then he moved to the United Arab Emirates to Abu Dhabi.

So back then, you know, in late seventies, early eighties, there was a big boom in the middle east, especially in Abu Dhabi and Dubai with all the oil. Exploration and the oil money, there was a lot of construction happening, you know, the whole structure of that country was changing. And my dad, you know, being an architect, found a good opportunity and Abu Dhabi, and he lived there, you know, from the late seventies up until early nineties.

David Hirsch: So it’s sort of interesting. You were born in India, you spent your formative years in the middle east, back to India, and now in the U S so three complete and distinct parts of the.

Taruj Ali: Yes, it’s been fascinating. And I think I’ve learned quite a bit about all different cultures and, you know, hopefully for the better.

David Hirsch: Yeah. Well, thanks for sharing. I’m sort of curious now, how would you describe your relationship with your dad?

Taruj Ali: Um, my dad is just an awesome individual. He’s, he’s such a role model for me, and he was always there for us, very loving, very caring, and he was very happy. Um, which I remember, um, you know, he was a big part of our childhood.

He loved us here door does, and, you know, made sure everything was there for us when we needed. So I have a very loving relationship and he’s very loving towards his grandchildren. He loves babies. He just, and he’s very hands-on with them. You know, some, some grandfathers I know, especially in our culture, they’re very skiddish, you know, when it comes to babies, especially, you know, changing diapers and cleaning and those things, but.

Always very hands-on so we really lucked out.

David Hirsch: That’s fabulous. So is there an important takeaway or to a lesson learned a story that sort of emphasizes your relationship with your dad?

Taruj Ali: I would say, you know, just always being there for us and never being someone who we couldn’t approach, or we couldn’t ask a question or, you know, be afraid of be apprehensive.

He was always there. And like I said, very hands-on right from the beginning and you know, up until even, even now, you know, he really cares about his children, even though we’re grown adults with our own children. He’s always asking about us, checking on us, trying to help us in any way he can. And it’s been a really good role model for the grandchildren too.

David Hirsch: Good. Well, it’s a blessing, right? To have your parents around. From a grandparents’ perspective to actually have grandkids, right? Not all individuals get to have that experience. So it’s a blessing all the way around, please. Sure. Any other father figures growing up? You

Taruj Ali: know, the one I would probably like to mention is my uncle, who is the younger brother of my dad.

And the reason he, uh, he has been a role model and I’ve looked up to him is because he’s also a physician. And interestingly, I ended up not only becoming a physician, but choosing a specialty that, that he wasn’t, he was a pulmonologist mean. He had a very similar path. He. Born and raised in India, trained in India and then came to the U S and did all his training here.

He he’s here, he’s in North Carolina and, you know, we still stay in touch. We talk to each other, we visit and you know, his sons are here, so we’re still very close.

David Hirsch: That’s nice to know. I don’t know that it’s coincidental, but he must have had a pretty good influence on you. Not only to become a doctor, but to follow if you will, in his footsteps with the same specialty.

Yeah. So you mentioned you went to medical school and Hyderabad. I think I remember you telling me that you did your licensing exams in Bangkok and then your residency in the U S. Yep.

Taruj Ali: You have a great memory. Yes, I did. So back then we couldn’t take the licensing exam in India. Um, so this was the early nineties, early to mid nineties.

Uh, we had to travel to Bangkok or Singapore, so I actually went to Bangkok with a bunch of friends and that was quite an XP.

David Hirsch: And, um, where did you do your

Taruj Ali: residency? So I did my residency in New York. Uh, it used to be St. Luke’s Roosevelt hospital, uh, affiliated with Columbia university. And now it’s called Mount Sinai.

Uh, it’s part of Mount Sinai network, but affiliated with Columbia university. So I did my residency and my fellowship at the same hospital.

David Hirsch: And, um, from what I remember. You actually took triple boards and pulmonology critical care and

Taruj Ali: sleep. I did. Yeah, I did pulmonary critical care and then, you know, sleep medicine in my final year.

David Hirsch: Excellent. So I’m sort of curious to know how to do you and Dilshad

Taruj Ali: meet. No. So that’s, that’s an interesting story. I don’t know how much you know about arranged marriages, but ours was an arranged marriage. You know, we’re both from Indian background. Dilshad was born and raised here in the. But her parents are from India.

And in fact from the same town from Heather, but she was actually visiting Heather, bud, and it was my sister’s wedding in Heatherwood. So, you know, that’s when the families met and, you know, as it happens in arranged marriage, It’s the elders who kind of look for prospects for the bride or the groom. And if they find someone who’s suitable, then someone who’s elder in the family introduces them.

And then you go from there. So basically, you know, we were introduced to each other and on that trip, I remember we had a supervised date where we went. For dinner at this fancy five-star restaurant, we had a chaperone Dilshad his uncle was the chaperone. And, you know, we sat at a table and her uncle sat at a table, you know, slightly away from us, but, you know, he could clearly see us, but that was our first date.

And, you know, things went on from there. And, you know, we ended up getting married. We got married here in the U S after I came here and you know, 21 years later here we are.

David Hirsch: That’s fabulous. I love this story. And, um, it is culturally different than what happens in the United States. Yes, for sure. Do you think that you and Dilshad will be involved with helping your children find their mates or is that not likely to be the.

Taruj Ali: You know, we’re actually getting there pretty close to that. Dinesh is 20, you know, I actually don’t know if, you know, if he’s going to ever go to have a life partner or not, but you know, I never want to discount anything, but then we have a daughter who’s 17. So we talk about it and I think it’s going to be a variation.

You know, it’s going to be like a hybrid, I think, but we’re open, you know, we can expect the sort of arranged marriages that we have. For our children, because it’s just a different society. It’s different brought up and you know, not that one is better than the other one is preferable to the other, but I think you just have to be, you, you have to adapt and you have to listen to what your children want or you know, what they are comfortable with.

So I hope we’ll have some say in their choice, but I certainly don’t foresee the kind of arrangement is that we have.

David Hirsch: Okay, I’m just curious. Thank you for sharing. I love your transparency. So let’s switch gears and talk about special needs first on a personal level and then a little bit beyond. So I’m sort of curious to know before Dinetia is birth and diagnosis.

Did you or dill shout out any experience with the special needs

Taruj Ali: community? No, absolutely not. I mean, um, you know, who expects that? Right? I mean, You know, you know, me, I was, I was a physician, but I’ll be very honest when we were training. I don’t remember even one lecture in medical school, on autism. I mean, this was back in the day and especially in India where there’s probably even a much lesser awareness about this topics.

I don’t remember ever reading a chapter on autism. I didn’t even, I don’t remember that being mentioned in any of the lectures in medical. So, so that’s at a professional level, but even at a personal level, you know, I don’t remember that now in hindsight, you know, if I think, you know, a certain kid or, you know, certain person in our family, could that person have had autism, then, then it strikes me.

Yes. That person was probably autistic and nobody knew about it. You know, we had a distant relative who used to live across the street from us and, you know, she had a disability. Nobody gave a name to it back then. Unfortunately, everything was labeled mental retardation, this, this, this broad category. And a lot of stuff came under that.

But now that I think, you know, that was probably autistic. I don’t know about Dilshad, but I don’t think she had direct interaction with, you know, any individuals. But again, she had mentioned to me that during school, now that she thinks about it in hindsight, she’s sure that, you know, she came across kids who were autistic or on the spectrum and she remembers, you know, the stigma around it and you know, how those kids struggled in school and all that.

So, yeah.

David Hirsch: Okay. Well, thanks for sharing. I’m sort of curious to know how did the diagnosis transpire and what was your first reaction?

Taruj Ali: So when Dinesh was born, I think they’ll shut. My wife knew much before me that there was something wrong. And let me, let me backtrack a little bit. So they’ll charts, pregnancy was a high-risk pregnancy.

And without getting into a lot of details. They’ll shout had a pretty serious life-threatening illness, you know, few months after our marriage. Luckily she recovered from it, you know, made a full recovery, but not too long after that, we found out that we were pregnant. And right off the bat, it was a high risk pregnancy.

She had to take some medications and stuff to make sure that the pregnancy went along. So we were always a little nervous and on the edge about the pregnancy, but. Besides the fact that he was born a little early and that they’ll show that to add a C-section everything else was fine. I mean, we didn’t expect any of this, obviously.

So it was very unexpected, but Dilshad picked up on it much before me. And even though I was a physician and, you know, should have known this, the early signs and symptoms, I think I was in denial to be very honest. I was also doing internship, extremely busy schedule, and didn’t have a lot of time to give to my family, to, you know, to Dinesh, to deal chart.

And honestly, I was in denial and, you know, she knew it much before me. And, you know, she tried to talk to me about it and gave me signals, but, um, I think it was, uh, for me it was much later and it wasn’t.

David Hirsch: Okay. It was your first child. So it’s not like you’ve got a point of reference, a personal point of reference, like an older sibling, you know, when a second or a third is born there.

They’re not keeping up, you know, with the brother or sister or comparing them at the same age. So I’m not trying to give you a pass, but it’s not uncommon for one of the parents, either the mom or the dad not to be, you know, right on the same page. I think

Taruj Ali: she knew, you know, when he was one and a half, two years old, but I would say two and a half to three years old was when we all came around to it and actually saw someone and got a diagnosis.

David Hirsch: Thank you for being so transparent again. So were there some fears or concerns once the diagnosis was made that either you or Dilshad had that you can remember back?

Taruj Ali: Of course. I mean, it was a w we were stepping into the unknown, you know, we had no idea what to expect moving forward. You know, we were just starting to learn about this diagnosis and what it would entail.

Uh, I don’t think we had any idea of how. Profoundly, this was going to change our lives for forever. You know, it’s a life-changing event. Um, you go from stages of denial to, you know, just being devastated, to being desperate about the situation. You go through a phase where. You know, you’re thinking, is this my fault?

You know, did we do something wrong? Is that why this happened? What could we have done differently? Um, how can we make things better? Um, you get advice from a lot of people who all mean good. You know, who all are trying to give you helpful advice, but you know, sometimes you just get so impatient with them and you just don’t understand you.

You don’t understand what’s going on and I’m sure they’ll Chad went through that much more than me because she was trying to tell us much before anyone else. And, you know, we were just in denial and you know, you also hear from people who are with you. So my parents used to visit us a lot in New York.

And you used to live with us during those early years, uh, as grandparents, especially in, you know, in Indian culture, grandparents are very involved and, you know, they would have. You know, maybe it’s just a speech delay, maybe, you know, Dinesh is just a child who was going to speak late. Maybe he’s going to learn things a little late.

And you know, you go along with that for a little bit, but then you realize, you know, that this is not just a, you know, this is not a minor speech delay. He’s, he’s not just someone who’s going to hit his milestones a little later than, uh, you know, a normal neuro-typical kid. There was something majorly wrong.

So it was a process.

David Hirsch: Do you think that part of that was cultural or not?

Taruj Ali: I know Dilshad feels very strongly about this. I think a lot a culture has a lot to do with it. There’s, there’s a stigma around mental health and disability and mental disorders in general within our culture. And when I say within our culture, not just the Indian culture, I would say, you know, most, most of the subcontinental culture.

Or even the middle Eastern culture, there’s denial, there’s shame. There’s a stigma, lack of awareness, all of the above when it comes to mental disability or even physical disability. And especially when, um, you know, in the case of autism, when you look at an autistic child, the child might look completely normal to you, right?

I mean, if you’re looking at that child and he, or she is having a tantrum, if you want to call it a tantrum, In our culture, you know, a lot of the times it’s like, why don’t you discipline him? Why don’t you discipline her? You know, you got to be more strict with them. You gotta be more, you know, you gotta do better as a parent.

So there’s, there’s that pressure. And you know, you try to explain to everyone that this is not a temper tantrum. This is not us being bad parents, or, you know, the child being a bad child. This is a problem. You know, this is a condition. So there’s a lot of.

David Hirsch: It sounds like there would be a lot of tension right.

In your relationships, uh, in maybe internally to your family. And then, you know what the broader public, it seems like it was like a challenging situation. Uh, looking back on it.

Taruj Ali: Yes for sure. And you know, like I said, unfortunately, I was not there for a lot of it because I was still in internship and, you know, they’ll shout for the most part has had to do most of it.

David Hirsch: So was there any meaningful advice that you got early? That helped put you on the right

Taruj Ali: path? I think it was a lot of, you know, of course, you know, our parents, both my parents and the child’s parents were always there for us, a lot of support. They were the rocks, you know, always there for us, never, you know, They tried to make it as easy for us as possible.

You know, initially of course, just like us, they were also in denial maybe as to what was happening, but when we figured started to figure it out and we wanted to do some things, you know, some things that were not mainstream, you know, a lot of therapies that we wanted to try or Dilshad wanted to try, they were always very supportive, whether it’s, you know, emotionally, morally, financially, they supported us all through that.

So that was always there. So of course advice from them was always helpful. Dilshad was much more involved in, um, you know, getting involved in the autism community, reaching out to other parents. And then she, of course has become an advocate herself. Um, and a lot of people reach out to her now for advice.

And for me, I think, I mean not to generalize, but I think as dads. We don’t tend to talk that much. I’m talking about myself, but we internalize a lot of things and we have this system within our head and we try to keep a lot of it inside. So, I mean, I’m probably telling you things that I’ve never told anyone else right now, but that’s just how it is.

I’m not blaming anyone for it is. How it is for me and probably for a lot of

David Hirsch: dads, you know? Well, there’s a reason that, uh, people think that dads won’t pull over and ask for directions when they’re lost. Right. That’s just how men are wired. Right. And I don’t think that’s cultural. I think that’s just genetic.

Most men from wherever, you know, the us or India or wherever, you know, are wired. Be strong, resilient. And you know, you, you want to figure things out on your own. Right. And, uh, you know, thank God for GPS. That’s what I often say. You know, that’s probably preserved a lot of relationships over the years, but if you really just take a step back and put into perspective what you were saying about it being in your head, right.

Um, what comes to mind is that that’s how men. Think about things, that’s how we approach problem solving. And in certain respects, it’s, it’s really important, right. That, you know, we stay focused and, you know, we applied ourselves and we, you know, get the ball down the field if you will. But we’re just talking about some simple things.

Like how do I get from point a to point B? And if you take that same problem solving approach and you apply it to something more consequential, like raising a child or raising a child with special needs and to think you’re going to figure it out on your own. Um, you know, you’re going to be sorely disappointed, right?

You’re not going to get the results that you anticipate or that your child deserves. So sharing. You’re a story like we are today, hopefully, you know, provides an opening and some enlightenment to some other dads, perhaps much younger dads who might be struggling with some of these same issues to say, Hey, there’s no reason to figure it out on your own, right?

It’s not a sign of weakness, right. To ask for help or to want to be engaged with individuals that have already been there and done that. Right. In fact, it’s enlightened, right. You know, you’re smarter, right? You, you can, you know, engage in a mature. A point in time. And we all know, you know, with the science now that you know, the earlier you engage in the earlier, there are therapies, whether it’s physical therapy or speech therapy or occupational therapy, or fill in the blank that your child’s just going to start, you know, to make those advancements at an earlier age, so that you’re going to get more positive results.

So again, thank you for your transparency and just being so open about things. So at the risk of focusing on the negative, I’m wondering what some of the bigger challenges there’ve been for you and all shod?

Taruj Ali: Well, I think, you know, going from the early, the early stages, when we figured out what was wrong with Dinesh, you know, you go through a phase where you’re actually having.

A lot of friction in your relationship too. Right? Because like I said, they’ll shut knew before me that something was wrong and she was on it and she wanted to do X, Y, and Z. And I was not on board initially, you know, a lot of things that were not mainstream, again, being a person with a medical background, with a medical degree, I questioned a lot of those things.

I was like, where’s the data, you know, where’s, where’s the proof that this works. ABA was a new thing back then. Right. I remember we used to take, Dilshad used to take Dinesh to this clinic called Carbone clinic out of New York city. And she used to drive there. You know, she used to put our young daughter in the back seat and drive out of New York to this clinic, Carbone clinic, about 40 minutes outside the city.

And they used to do ABA therapy, which was still a new thing. You know, talking about heavy metals and heavy metals poisoning and, you know, mercury and stuff like that. And doing culation therapy and those things, all of those things, which are now more accepted were new back then. So there’s a lot of friction, you know, related to that.

We had very little time for each. You know, me being busy with my internship and residency, and Dilshad being a full-time mom, you know, with Dinesh taking care of all the stuff at home. And then, you know, all of his therapy, he started going to school when he was two and a half, three years old, um, you know, preschool.

So that was a very difficult phase trying to figure things out and just trying to figure things out for ourselves within our relationship. We, you know, arranged marriage. Yeah, we didn’t really know each other before we got married and we were still trying to learn about each other when we had done it.

And now we had a child who’s autistic who needed all our attention, and we’re still trying to figure it out. And that comes into the mix. So those were tough years. And, you know, I tell Dilshad that, you know, people always say, you know, it will be so nice to be young again and you know, do this. And then I’m like, heck no, I’m not going to that stage.

You know, we went through hell to get to this stage where I think we finally figured things out, you know, I think we know what we’re doing now. Uh, so yeah, it’s tough.

David Hirsch: Well, thanks for your transparency. Was there a turning point when you look back and say, Can’t connect the dots looking forward, but sometimes you can go back and look and say, oh, this is, this is when we turn the corner.

Was there anything

Taruj Ali: like that? Well, not really to turn the corner, but I can tell you when it hit me. So like I said, they’ll show new, you know, before me. But when it hit me, I remember distinctly we were at a Chuck E cheese and yeah. And Dinesh was in one of those mazes, you know, where you go up into this slide and you know, you’re going up there.

So he went up this maze and he backed himself into this corner of this maze. And all he had to do was turn around and go the other way. And he just could not figure it out. He was stuck there and he was looking down at me I’m and I’m looking up at him. I can go up cause I’m too big to get up there. And a simple thing, you know, just Dinesh turn around and go the other way.

And I just could not get. And that’s when it hit me, this is, this is something much bigger than what I ever imagined, and this is going to be with us for the rest of our lives. And, you know, I’m sure they’ll challenge be like, what have I been telling you all these years, you this long, but it really did.

And I still tell her, you know, you knew it much for me, but that was the, that was the moment that I knew something was drastically wrong. And of course, You know, we had the diagnosis and everything. We had a really tough period when Dinesh went through puberty and, um, you know, without getting into a lot of details, a lot of self-injury aggression, you know, mood swings.

We, I remember a phase when we were very close to considering. Putting them in a, you know, you know, in a hospital so that they could figure out what was wrong medication and all that. And I remember, um, me visiting that hospital in Virginia and, um, I, I went there by myself. They’ll shut, couldn’t even come around to, you know, taking her over there because we never thought it would come to that.

So I visited the hospital. I saw some of the. And I remember, I

I’m sorry.

I went back to the car and

I was crying.

So, you know, I was wondering, you know, how did we get to this point that we.

We’re having to consider, you know, this, a drastic step for our son. And you know, it’s not that I hadn’t seen these things. I was a physician. I had seen bad stuff. Uh, but when it’s your child and you know, you see the struggles that those kids were going through and. You know that

a lot of those kids had, you know, marks of self-injury their face had, you know, blisters and ulcers on their face from scratching or hitting themselves, bruises all over their body. And maybe, you know, I. At that point, I decided, you know, this is, this is not going to happen. We cannot put Dinesh in this business.

You know, nothing against the people who are there or against the kids who were there, you know, I’m sure they were there for a reason, but we just could not get around to them. So we went through that horrible phase, uh, you know, a lot of tension at home, a lot of tension around Dinesh and with the other kids who also needed our attention.

But I think after that, you know, after he went through puberty and we kind of figured things out, we saw another doctor. This was someone in New Jersey who we did virtual visits with. And then that was when we figured out this entity called pan. Um, which is pediatric auto-immune neurologic disease, which a lot of autistic kids have.

And it’s basically inflammation of the nervous system after a streptococcal infection, you know, kids have strep throat and such infections, and then they have this. Immune reaction where their nervous system gets attacked. And it leads to a lot of these symptoms, a lot of aggression and other neurologic symptoms.

So we saw, we saw a neurologist in Northern Virginia, Dr. Latimer, again, they’ll shut, found her through her network. And when we saw her and she diagnosed Dinesh with pandas and we did a prolonged course of antibiotics, and I think we tried steroids for a little bit. And, you know, after that, I think, you know, when you talk about turning the corner, I think, you know, once the puberty was, uh, he was going, uh, you know, in the late phases of puberty and when we figured out it was spenders, got him started on those.

I think that’s when we started turning the corner, not to say that it’s, you know, all Rosie’s since then, but definitely, I mean, we, those that was the worst phase and I think they’ll shadow degree. Sorry about the emotional, but I just, I mean, brought back horrible memories.

David Hirsch: Well, thanks for your authenticity.

It’s obviously a very palpable experience that you had my heart reaches out to the two of you, your family, for that matter. I’m sort of curious to know what impact Donesha situations had on his younger siblings or the rest of your family for that.

Taruj Ali: So our daughter, she’s such a sweetheart. Dennis was born in 2000 and Amal was bought in 2003.

So she was born while we were still in New York. And this was right when we were figuring out to Dinesh his diagnosis and the Chad was. Preoccupied with, uh, Donesha stuff and also trying to be there for Amal. And we’re really grateful that, you know, the grandparents, especially my mom, who was at that point, she was living with us for a long time in New York.

And my dad used to visit the shots parents used to visit, which was a big help, but a mother has always been. A sweetheart and she loves Dinesh more than anything else. And she has always been there for him. I think he has also been a good influence on her. Uh, he has certainly made her a very compassionate individual, a very patient, very understanding individual.

She’s very empathetic. Very grounded, very intelligent girl, you know, she’s done really well. And then, um, our little one Hamza, he was born at, you know, in 2007. So he’s much younger than Dinesh and I think. You know, when he was young, he probably didn’t know what was wrong, but, you know, once he figured it out, he actually is amazing when it comes to communicating with Dinesh or getting Dinesh to do something that we want him to do.

He’s very patient, he has a excellent rapport with Dinesh, and there are certain things that if we want to try to teach Dinesh, when we asked, comes out to do it because he’s so patient and he gets across to Dinesh and Dinesh loves him to. Physically so much bigger and was even when Hamza was a baby, but he was always very gentle with AMS.

I, you know, he knew he was little and they have a really strong brotherly Livan. So we’ve been blessed with two amazing children, of course, after Dinesh and who were very supportive. And, you know, we hope that they’re always there for them.

David Hirsch: Yeah, well, it’s reassuring to hear that the family is close, the siblings are close and that there’s an empathy and compassion for one another.

It’s not just one way. So I’m thinking about supporting organizations and I’m wondering if there are organizations that you can identify either for Donnish has benefit directly or through your family’s benefit that are worth giving out traditional.

Taruj Ali: So, you know, we’re in Richmond, Virginia, and I think one of the organizations has been the autism society of central Virginia, especially the Richmond chapter, which has been very supportive and we have supported them.

They’ve supported us, provided us a lot of resources over here. They’ll shout is, has been involved with them, you know, much more than me, but, you know, we participate in all the events that they have every year. And then the school that we, you know, the private school that Dinesh goes to phase on school enrichment has also been exceptional.

You know, they’re very, well-versed in the autism community and they’ve done a really fabulous job. We tried public school for Dinesh initially when we moved here, but it didn’t work out. So then, you know, we moved him to private phase on school and it’s been a blast. Great,

David Hirsch: thank you for sharing. And I’m wondering what a role munition has played as well.

Taruj Ali: So most in my wife is on the board at Mosen and, um, we’ve been involved with them and they actually do a great job spreading awareness about disability within the minority Muslim community. And they actually have a certification program for mosques across the U S. Where they will get your mosque certified ADA certified, and they have certain criteria for that, you know, th th.

And this is not unique to our community. There’s a lot of communities where there’s a lack of awareness, lack of resources, and still, you know, a stigma around mental and physical disability. And I think Mohsen has been instrumental in trying to break those barriers, spread awareness, and they’ve done some excellent work.

My wife has spoken at their events before and you know, I have attended a few of their events and I think they do a phenomenal.

David Hirsch: Yeah, well, very thankful for the work that they do. And importantly, helping these mosques become more open and accepting, uh, people with disabilities so people can, you know, pursue their faith and sort of with that in mind, I’m wondering what role spirituality has played in your family.

Taruj Ali: Wow. That’s a very sensitive topic and you know, again, another topic where they’ll shout and I. Uh, had difference with opinion over the years. Um, I think we’re now at a point where we understand each other and, you know, to be very honest, I would consider both my side of the family and they’ll shout side or the side of the family to be very religious and spiritual people, both sets of grandparents.

And I have struggled to be very honest, uh, through all this. You know, went through a phase when you try to question everything, you know, why, why did this happen to Dinesh? You know, what was his fault? You know, why did it have to be this way? Why did we have to go through this? Why did Dinesh have to go through this?

Why, why did God put us through this? And we’ve had our struggles, you know, I’ve gone through several phases where I question everything and. I would say, you know, when it comes to faith and spirituality, I think they’ll shut has always been much more stronger and steadfast. I had a phase when I was really struggling and I think I’ve covered.

Come around to meet her halfway. I still think she’s, you know, she’s much stronger in her faith and spirituality. And we went through rough patches where we didn’t agree at all on, you know, what I wanted to do or how I wanted to, you know, raise our kids and, you know, talk to them about things and how she wanted to do it.

And, um, I’m being honest. We we’ve clashed on this issue, but I think finally we have reached a point where we. Yeah, on some things we agree to disagree, but on most things we agree, hopefully we can, you know, show our kids the right way forward. And, you know, we always, we want to be cognizant and tolerant of other points of view of other cultures and other religions.

But I think spirituality. Has been very important to all of us. And I think it’s, it really helps, you know, if you have that in your arm or because this is, I mean, this is a lifelong battle that you have, right. You need to have a strong backing to get through this successfully.

David Hirsch: Yeah. Well, thank you again for being open and honest and transparent.

If I could paraphrase, you’ve gone through a bit of a crisis of faith, right? Because of the experience, thank God that you and I’ll include myself in the same boat, have married a woman who are women of strong faith. And I’ve heard often that. Without your faith, you know, you would not be able to do the things that you need to do or that you’re able to do right.

Without leaning on your faith. In fact, there was a rabbi who’s part of the special fathers network out in LA Bradley arts and Bradley arts. And that, um, came right out and said, you know, he doesn’t know how people who are not believers can deal with. Challenges like this in life, because you’re not able to do it, you know, with your human strength, right.

You need something much greater to, to rely on. So again, thank you for your honesty and transparency. I’m thinking about advice now, and I’m wondering if there’s any takeaways beyond what we’ve discussed. Advice that you can offer another dad to Rouge who might find himself in a similar situation with, uh, a child with a different.

Taruj Ali: I think what you mentioned earlier, David being open about it, not ashamed to ask for help, to seek help early, not trying to internalize everything and trying to figure it out by yourself because you won’t be able to do it. And even if you’re able to do it, you’re probably gonna miss things. There’s going to be a delay.

So, and now that we have so many resources, you know, I’m just thinking. You know, back when we were going through this, there wasn’t much awareness. See, you know, even in a place like the U S where there is a lot of awareness, so, you know, talk to people, don’t be ashamed to, you know, to seek help. You’re not going to figure it out by yourself and there’s nothing wrong in that.

You know, it’s not a weakness. It’s just how it is. This is a life-changing event and you need all the help that you need. So that would be one advice. And then the other thing I would say is don’t be afraid to speak up or challenge, you know, if you’re in a community or in a culture that has some misgivings or misunderstandings of this whole topic, so be prepared to confront them and challenge them and try to change the narrative.

You know, we need to be more inclusive. We need to be more understanding of each other more tolerant and. Everybody’s not the same. People are different. We know we just need to be more welcoming of, of people who don’t look like us or behave like us.

David Hirsch: Yeah. Well, thanks for sharing to paraphrase the open, seek help.

It’s not a weakness. Don’t be afraid to speak up. Right. You know, your child better than anybody else. And you’re hearing something or seeing something that doesn’t reconcile, you know, you need to advocate, right. That’s I heard you saying so for our listeners, remember you need to follow the doctor’s orders on this one.

So I’m sort of curious to know, um, why is it that you’ve agreed to be a mentor father as part of the special fathers name?

Taruj Ali: Well, honestly, you know, when you first approached me, I wasn’t sure if I wanted to do it, I want it to be, you know, open about it. But then I was thinking back as to what was lacking when I was going through the initial phase, I was like, this is what I mean.

Right. I needed a medium where we could share our thoughts and learn from each other. And why would I not want to do it if it’s going to benefit someone who’s in that phase right now. And that made me decide that, you know, I should do this and speak about this, you know, in a larger, broader perspective, but also to speak about it in slightly more.

Not mainstream cultural realm, if you will. You know, because we are still a minority within this country. So things that are within our culture, our community. Things that are normal considered normal within our community. It might be completely offbeat for the larger community. So that was another reason I wanted to speak about this from the larger perspective, but then also from a Saudi Asian minority Muslim perspective.

So that more people are comfortable listening about this and talking about in reaching out to other people for help, you know, like you mentioned most in it’s doing excellent work in that, you know, in that community. And I’m sure that. Other organizations doing it within smaller communities. So we have to build that coalition towards the larger, larger audience.

David Hirsch: Yeah. Well, we’re thrilled to have you thank you for being part of the group. And I think I’ve heard it from nearly 500 dads who have said something along the lines of what you just said, which is, I wish there was something like this when I was a younger dad, I didn’t know who to turn to. Um, there weren’t a lot of people that could relate to what I was going through and how isolating it.

So let’s give a special shout out to GE to her at Musen for contacting us.

Taruj Ali: Yeah. Thank you, Julie. She’s a good friend of my wife. They’ll shut.

David Hirsch: So is there anything else you’d like to say

Taruj Ali: before? Well, David, I want to thank you for doing this and, you know, for spreading awareness and for getting so many dads involved, you know, like I said, I wish there was something like this when I was going through this as a young dad, but I’m glad that now there is, and I’m sure a lot of young dads will benefit from this.

And you know, I, I just want to mention spread awareness, wherever you are, be the best advocates for your kid, that you can be. Don’t be afraid. And remember that you’re not. There’s a lot of dads out there and you never know, you know, the person next door could be going through it, but they might be internalizing it and not talking about it.

So, you know, and they’ll chat. And I always talk about this and say, you know, don’t be afraid to approach someone and offer help if you can. You know, when you look at a child who let’s say, you know, you’re traveling and you look at a child having a temper tantrum, if you want to call it. You know, and you, you can see on their parents’ faces how uncomfortable they are, you know, if you just look at them and you give them a genuine smile, that goes a long way, you know, to just say that I get it.

I understand. It’s okay. We’ll get through this, you know, just, you know, be better human beings.

David Hirsch: Yeah. Well, great advice and just, uh, I think people want to be seen, right. Not be judged or criticized, but they want to be seen. As great Pearl of wisdom. So if somebody wants to learn more about loosen the autism society of central Virginia or contact you for that matter, what, what would you suggest?

Taruj Ali: Well, I’m sure you can look them up, you know, on their websites, you know, uh, pertaining to most. And I would say, you know, if you’re. If you belong to the Muslim faith and you’re part of the Muslim community, and you want your mosque to be a more inclusive place, most is the place to go, you know, look them up, reach out to GE, uh, brother Mursal Amman is involved with most, and my wife is one of the board members, you know, so find them on the web, reach out to.

Get your mosque certified to be, uh, inclusive, you know, disability friendly place. I think it goes a long way for people to feel welcome in their places of worship. I think goes a long way. And then of course, autism society of Virginia has done a tremendous job for the autism community at large here in Richmond and all through Virginia.

So reach out to them for resources and I’m sure there’s similar organizations all across the us.

David Hirsch: We’ll be sure to include that information in the show notes. That’ll make it as easy as possible for somebody to file. Terrific. Thank you for taking the time in many insights as reminder, truth is just one of the dads who is part of the special fathers network, a mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation, your own, please go to 21st century dads.org. Thank you for taking the time to listen to the latest episode of the special fathers network, dad to dad podcast. I hope you enjoyed the conversation as much as I did.

As you probably know, the 21st century dad’s foundation as a 5 0 1 C3 nonprofit organization, which means we need your help to keep our content free, to all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your support to ruse. Thanks again.

Taruj Ali: Thank you.

And

Tom Couch: thank you for listening to the dad to dad podcast presented by the special fathers network. The special father’s network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.

It’s a great way for fathers to support fathers go to 21st century dads.org.

David Hirsch: And if you’re a dad looking for help, or we’d like to operate. We would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad also, please be sure to register for the special father’s network.

Bi-week the zoom calls held on the first and third, Tuesday of every month. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@twentyfirstcenturydads.org.

Tom Couch: The dad to dad podcast was produced by couch audio for the special father’s network.

Thanks again to horizon therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to. Develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about horizon therapeutics at horizontherapeutics.com.