Dad To Dad 442 – Jeremy Warren of Tulsa, OK, Founder of DOSA (Dads On Special Assignment & Father of 6, Including 1 With A Rare Disease

Transcript:

Jeremy Warren: My son has taught me a lot more about who I am. He’s taught me a lot more about who I am as a man and as a dad, and he’s never spoke a word.

David Hirsch: That’s our guest this week, Jeremy Warren, a graphic artist and founder of dosa Dads on Special Assignment, an Oklahoma based nonprofit that builds community for dads of kids with special needs. Jeremy’s married to Heidi and they have six children, including Landon, 6, who’s had many health challenges since birth. A fascinating conversation that you’ll hear on this Special Fathers Network Dad to Dad Podcast.

David Hirsch: Dad to dad, you’re not on your own. We walk this road together, hard and whole.

David Hirsch: Now say hello to the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network Dad to Dad Podcast. Two brief messages. First, I’m thrilled to announce our new book, Dads Raising Children with Special Needs and Disabilities. A Guide for 21st Century Dads is now available on Audible, Amazon, Barnes and Noble and other sites. Second, the Special Fathers Network US tour, a month long 50 state 60 plus stop tour, took place from May 21 to June 21. Mission accomplished. It was quite a journey with hundreds of new connections which will have a ripple effect for months and years to come. Thank you to the following partners, Gigi’s Playhouses, John’s Crazy Socks, Rotary Club of Chicago and Special Olympics. Thanks also the 60 plus venue hosts, which included 12 Special Olympic State offices and 15 of the 62 Gigi’s playhouses. Special thanks to the RV crew mentioned here in order of appearance. Zane Kooks, Andrew McDowell, Nelson Raskoon, Charlie Hirsch and Steve Harris. You guys were amazing. And special thanks to all those who offered their prayers and provided financial support. This was clearly a team effort.

David Hirsch: Through every season, in every stride, great dads are present.

David Hirsch: 247365 now let’s listen in to this conversation between David Hirsch and Jeremy Warren.

David Hirsch: For the record, we’re here at Special Olympics Oklahoma and it’s day 14 and stop number 26 of the SFN US tour 30 day 50 state 60 plus stop tour to strengthen the Special Fathers Network and distribute complimentary copies of the new book Dads Raising Children with Special Needs and a guide for 21st Century Dads. I’m thrilled to be talking today with Jeremy Warren, Tulsa, Oklahoma, who was formerly in the graphic arts and printing business and now is founder of DOSA Dads on special assignment and father of six, including a son with special needs. Jeremy, thank you for taking the time to do an interview for the Special Fathers Network Dad to Dad Podcast.

Jeremy Warren: Absolutely. Really looking forward to it.

David Hirsch: David, you and your wife Heidi, have been married for 22 years and are the proud parents of six boys ranging in age from 2 to 18, including your second oldest, Landon, 16, who has rare disease, was officially diagnosed just a few years ago with Pura syndrome, a secondary condition also known as polg. Both of which have resulted in severe neurological delays and intellectual disabilities, plus a slew of other side effects. Let’s start with some background. Where did you grow up? Tell me something about your birth family.

Jeremy Warren: Yeah, sure. So I actually was born and raised here in Broken Arrow, suburb of Tulsa, and have a younger sister. Grew up in a family of four, you know, a typical American family, you know, and just always loved drawing as a young kid. Went to Broken Arrow High School, did two years of advertising and design and graphic arts at VO Tech Vocational Technology community here and immediately went into that career. Really just enjoyed the time as a young kid.

David Hirsch: Excellent. So let’s take a step back before we jump into your career and beyond. What does your dad do for a living?

Jeremy Warren: My dad spent a majority of his career as a machinist, worked in a machine shop in Tulsa, and my grandfather was actually a career machinist. That’s how my family ended up in Oklahoma. He was in aircraft and got transferred here from Huntington Beach, California.

David Hirsch: Okay. And how would you characterize your relationship with your dad?

Jeremy Warren: Oh, boy. Well, I’ll tell you this. I love my dad dearly. He’s one that’s a man of few words. But you know what he’s interested in. He’s always been available, and I know that he’s loved me. Even though he’s not always been great at communicating that, he’s always made that very clear.

David Hirsch: Any important takeaways, lessons learned? When you think about your dad, you

Jeremy Warren: know, a lot of times when you grow up, you realize that you might be very different from your dad,

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Jeremy Warren: but it doesn’t change the depth of the love that they have for you and that you have for them.

David Hirsch: Very important takeaway. Thank you. So you made reference to your dad’s dad, the one that was the machinist. How about your mom’s dad? Did you know your maternal grandfather?

Jeremy Warren: I did. In fact, him and I had a very unique relationship. I grew up across the street from my mother’s parents, so my relationship to my grandparents on my mom’s side was very intimate. I would describe my mom’s dad as my spiritual mentor. He really is the one that helped me understand the value of strong family dynamic, what it meant to just bring the family together, to pray together, to live an adventurous life. He was a career engineer for Zebco or Brunswick Corporation. So he designed a lot of the fishing reels and was a career fisherman. And so I did a lot of fishing as a kid growing up with him. But just a quick side note, my grandfather actually passed away in 2024. I was processing through how to honor him. I’ve had the privilege of officiating three of my grandparents services. I was praying about a way that I could honor him. I felt like the Lord really gave me a special message that ties with what we do with our nonprofit in caring for those with disabilities. My grandfather was a huge supporter whenever I launched our nonprofit. I wrote my very first children’s book this last year, had it illustrated and published it earlier this year in honor of him and his middle name. And it’s a story about a goldfish. And helping people understand that this goldfish loves to camp, loves to travel, and helps people recognize that. A lot of people might see that goldfish in that fishbowl and think that it’s limited to sitting on a dresser or a table somewhere in the home. But this family was a family that loved to travel, that loved adventure, and they took this goldfish everywhere with them. And it helped them recognize that you’re not really limited by the things that the world sees as a limitation. You’re only limited by those that you place around you and you surround yourself with.

David Hirsch: I love the metaphor. So what’s the goldfish’s name or what was your grandfather’s name?

Jeremy Warren: My grandfather’s name was Thomas Audley Pulliam. His middle name is Audley. A U D L E Y. And it’s the adventures of oddly, the goldfish.

David Hirsch: I love it. So I’m sort of curious to know, how did you and your wife meet?

Jeremy Warren: Yeah, that’s a really interesting story. I was actually attending a church in Broken Arrow. We were having a New Year’s Eve party. My wife, a roommate that I actually went to church with, and she invited her to come along. And so it was about a week later we had another event where we were getting together for dinner and bowling just as a kind of a college and career group. And I knew she was going to be coming to that. And I knew if I had any chance at all, I needed to strategically place myself across the table from her at dinner. And the Lord saw fit to make that work. And that’s where it Started.

David Hirsch: So I’m thinking about special needs now. And I’m wondering prior to having children if you or Heidi had any connection to the world of disability or special needs.

Jeremy Warren: Not really. Not really leading up to that. You know, part of my family story was my parents actually had a stillbirth two years before I was born. So I do technically have an older sister, but I never met her. And then I was born and then four years later my younger sister was born. And one unique thing to that story is that my younger sister and my older sister actually share a birthday.

David Hirsch: Yeah.

David Hirsch: Well, thanks for sharing. Sorry to hear about your. What would be your older sister? But she passed like well before you came along.

Jeremy Warren: Well, I believe I’ll get to meet her someday.

David Hirsch: Yeah. That’s awesome. So what is Landen’s diagnosis or diagnoses and how do they come about?

Jeremy Warren: Yeah, so his story is really interesting. My wife had a full pregnancy, 39 week gestation. Everything was healthy. We go in for delivery and during delivery they were noticing just some stress on him. And as soon as he came out, they noticed a true knot in his umbilical cord. So they wanted to evaluate that. He was completely purple, not breathing. As soon as he was born, they rushed him and I back. We spent a couple hours kind of getting him stabilized. 12 hours old, both his lungs had collapsed, you know, ICU, no movement. But it became pretty evident early on that there was more complications than just what had occurred from the hypoxia that was a result of the true knot. And so they started doing a lot of genetic testing and things like that, but nothing ever came back positive. And so we just started down the road of therapies and just what’s the level of treatment and care that we can get him now that’s going to give him the most success to being able to function? And it wasn’t until he was 13 years old, actually, David, before they came back and said, hey, we’ve had a lot of development over the last 10 years. We would really like to do another

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Jeremy Warren: panel and do some more testing. And that’s when it came back with what’s called Pura Pura syndrome. And it actually wasn’t wrote into medical records until 2014. So he was about five years old before they had really discovered this rare disease of Purita syndrome. And right now there’s only David. As we’re sitting here talking, we’re part of a pure syndrome organization. And there’s only about 750 known cases globally. So even within the rare disease world that’s fairly rare, but there’s enough research and information to kind of know some of the indicators which he has, every single one, you know, seizure disorder, low muscle tone, non verbal, and then of course the underlying condition of plg, which is a mitochondrial disease that affects some of his DNA. So he’s got a couple of different things going on there. But it was a long journey to get the diagnoses. And part of the challenge my wife had, David, was really working through that diagnosis. You know, there’s value in knowing what it is that your kid has so that you can know exactly how to care for them. But there’s also this double edged sword of I don’t want that label. And so kind of working through that process. And so,

David Hirsch: yeah, there’s a lot there to unpack. Thank you for sharing. So you knew that there was something from the get go, right? Based on the circumstances of Landon’s birth, you didn’t have a full understanding, which is what I heard you saying, an official diagnosis for a dozen plus years, but you knew that you had something consequential going on and you embraced that with the ot, ptst, all the different therapies that, you know, even without a diagnosis that you need to pursue. And when you think back to those early days, the first couple of weeks, the first couple months, the first couple of years, for that matter, what were some of the fears that you and Heidi had? Can you think back to those days?

Jeremy Warren: I can certainly. You know, Landon for the first year had really no movement. At nine months old, he couldn’t hold his head up. He was on a ventilator and oxygen for about two and a half years. So the first three years were very medically fragile. And I remember, you know, those three months in icu, you know, sitting in the hospital and his machines are going off, it’s late at night and I’m sitting there just looking out the window at the intersection and just the traffic going by and it just seemed like the world was just moving in. It was like I was in slow motion and the world was just moving at a, at a blazing speed. And it was just a very surreal experience of just really processing, like, okay, this is not like our first son, you know, who is very typical and knowing that there’s going to be a lot of challenges ahead and just really questioning like, why God, why, why me? Why my son? And then, yeah, just trying to process like what, what it was going to look like. You know, we try and kind of establish an idea of what this is going to require of Me?

David Hirsch: Yeah. Well, thank you for your transparency. Was there some meaningful advice that you got early on that helped put this situation and perspective?

Jeremy Warren: No. And I, you know, David, it’s hard for me to say that, but, you know, in the hospital, there’s. I was working two jobs at the time. You know, I was running a printing business. I was also driving delivery route to provide insurance for my family. And there was a few occasions where, you know, I’m staying at the hospital and, you know, doctors would come in and say, hey, I’m going to give you a few minutes, because we, you know, we don’t know when you get off work today, if your son’s still going to be alive, you know, and then having to go and provide financially for my family throughout the day with those things playing through my mind. And, you know, the thing about it, David, is my wife and I were very plugged into a church family at the time. We were actually hosting small groups in our home. I had some guys who I considered to be very, very close to me. But what I found, kind of going back to your question, was those guys really had no idea how to relate to my circumstance. And a lot of times when guys get together, hey, man, how you doing? You know, they wouldn’t even ask that question, David. They knew how I was doing. I wasn’t doing good, you know, and so they just stopped asking the question. Over time, those relationships really were strained, you know, not to any fault of theirs. We were just in a season that was unrelatable. And so there wasn’t a lot of great advice that I was receiving at the time because it was uncharted waters. It was uncharted waters for us, for our family, for our extended family, and I would even say for our church family. And so there was a lot of time of just feeling isolated

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Jeremy Warren: and having to kind of navigate that alone.

David Hirsch: Yeah, well, thanks for the authenticity about that.

David Hirsch: We’ll be back with more of the conversation on the Special Fathers Network Dad Today dad podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a great dad coin. Thank you. Now back to the conversation.

David Hirsch: You made reference to your faith and your spirituality a number of times. I’m wondering, did you have what most people would refer to as a crisis of faith? Along that journey early on, for sure.

Jeremy Warren: Absolutely. Yeah. Yeah. You know, I grew up in a Christian home, grew up in a small church. I had accepted the Lord as a teenager, actually adolescent. I felt like I had a pretty solid foundation up to this point. And now everything changed because you start asking those questions of, why would God allow this? You know, why did these things happen? Why me? And so it really did. It led me down that journey of having to answer some really hard questions and really come to the conclusion to recognize, hey, this is not about me. This has nothing to do with me. This has to do with God using circumstances to display attributes and characteristics of who he is and overcoming adversity and challenges. And we even see this in the book of James where it says that to consider it pure joy when you face trials of many kinds, how is that even possible, David? How can we consider it joy when we face trials of many kinds? But if you go on and read more about that, it actually talks about how it builds character and perseverance and all these different attributes, attributes that we carry as those who have surrendered our lives to Christ. And so it really led me down a path of recognizing that I was not really fully living it out in the way that I think that God desired me to. And I needed to be broken down to a point where I could be fully surrendered to him and recognize that he was writing a story that was not my story. Because here’s the reality for you and I, David. If any one of us was given the opportunity to write our story, our stories would look very different.

David Hirsch: Oh, my gosh, yeah, I’d be a major league baseball player.

Jeremy Warren: But the reality is our stories have aspects of it that we never planned. But yet for a lot of men, they can look back on that and go, you know what? That isn’t at all how I would have wrote it. But I see what God’s doing through it. And I can tell you this, David. My son has taught me a lot more about who I am. He’s taught me a lot more about who I am as a man and as a dad. And he’s never spoke a word.

David Hirsch: Yeah, that’s very profound. Yeah. Well, thanks for sharing. As the tears well up in my eyes as they do yours, it’s palpable. Right. And there’s been a lot of lessons, maybe not from advice that you got from others, but like, you just reflected on. And I’m sort of curious to know over what period of time this revelation, this understanding take.

Jeremy Warren: You know, David, I would say it was over about a 10 year period. It’s about a 10 year journey for me to really work through that, that process.

David Hirsch: Yeah, very powerful. So not to focus on the negative, but what have been some of the biggest challenges that you’ve encountered? You mentioned that Landon’s non verbal. So no doubt communicating has been a little bit of a challenge, but what comes to mind beyond that?

Jeremy Warren: Yeah, I think currently one of the biggest challenges is just the fact that he is very low muscle tone. So he’s in a wheelchair most of the time. Transferring him and being able to participate in a lot of activities is a big part of it. You know, a lot of times you get invited places. Most places are not actually handicap accessible. And there’s just some things that you enjoy doing as a family that become much more difficult when you have someone like Landon as part of the story. I love mountain biking and that was one of the things that I had always desired to do with my boys is mountain bike. My, my older son and I mountain bike. And so, you know, just trying to navigate some of that, like, okay, how can we make this work? You know, doing a trailer, you know, which by the way, mountain biking with a trailer is not an easy task.

David Hirsch: I think of mountain biking is sort of dangerous. You’re going up steep inclines, you’re coming down, there’s trees, there’s rocks, there’s just a lot of stuff that happens.

Jeremy Warren: Well, it usually turns into more of just riding around the neighborhood, but, you know, it’s things like that.

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Jeremy Warren: And then, you know, being non verbal really is a big part of it in a lot of ways. He’s very strong cognitively, he understands a lot of things, but you never really know what he’s thinking. And that’s been a really big challenge for me. You know, just not having the ability to have those conversations that you would have as a, as a father and a son.

David Hirsch: So from an educational standpoint, has he been in special ed? Has it been mainstream? Some of both.

Jeremy Warren: One of the things my wife and I personally discussed early on was our kids education and wanting to raise them in a home that puts Christ at the center of our education. So we homeschool, we homeschool our sons. We actually use a national program called Classical Conversations, which is a phenomenal organization. And our boys all participate in that.

David Hirsch: That’s fabulous. So is Heidi the leader of this homeschooling program?

Jeremy Warren: She is definitely the ringleader at home when it comes to their education. You know, I’m out of the home a lot. And so she takes the primary Lead on that. And then she also actually directs a community here in Tulsa, locally.

David Hirsch: That’s fabulous. So I’m sort of curious to know what these challenges, the impact of these challenges have had on Landon siblings, your marriage, and your extended family for that matter.

Jeremy Warren: Well, I’ll touch base on my marriage first because I always want to put my wife first. You know, especially we understand when we look at our family dynamics, for those that are married, prioritizing your wife is a critical aspect of what we do in raising a family, especially a family with special needs. And so I want to touch on that first. We had a few years where we had in home health care, living with us for 12 to 16 hours a day. And let me tell you, that puts a tremendous strain on a marriage when you have a stranger living in your home.

David Hirsch: Lack of privacy.

Jeremy Warren: Yeah. You know, you come home from work, you have dinner, you go over charts, you know, with a nurse that shows up at 10 o’, clock, and then you have a lady sitting in your living room keeping your son alive while you try and go down the hallway and sleep. And so, you know, that raises a challenge for intimacy and just a variety of things. And so it definitely puts a strain on the marriage. I would say, for my wife and I, we’re extremely blessed in the fact that we’re both very open in our communication with one another and being able to try and talk through those things. So to me, that’s a big aspect of just communication, which I think is one of the fundamental things that’s allowed my wife and I to persevere through this is just being able to talk through those things. But there are some things that you don’t want to burden your wife with that you think about. And my oldest son, you know, our dynamic’s interesting because we have one son that’s two years older and then Landon, and then we have four younger. And so we have a very interesting dynamic from the perspective of. In some ways, our oldest son feels like an only child because his closest sibling can’t participate in activities. He’s very athletic, he loves sports, played basketball through his high school years and just graduated last year. But he has an extraordinary love for his brother. And just seeing that early on, just seeing the way that he would interact with him, that he would include him, that he would engage with him. I think he has a real sensitivity to just relationships in general. I see that in him as an 18 year old man now, and even to the point where there’s some camps in states close to here that do special Needs camps through the summers. And he’s gone as a camp supporter and participated in some of those events and has actually gone with Landon on those a couple times. And so he’s developed a real special relationship to just his brother. And I’d say for his younger brothers, I mean, he’s still a 16 year old, so he still loves to pester them the best that he can. He’ll throw a toy or a book or try and grab their hand or whatever. And he gets that grin. He gets that grin. You can just see like, hey, I’m still your older brother. Landon is just to give you some context, Landon. I don’t know the term, David, but it’s part of his diagnoses where he’s very small framed. At 16 years old, he’s equivalent to about an eight year old in size.

David Hirsch: Oh, wow.

Jeremy Warren: You know, four foot. I think he’s four foot, four and about 80 pounds. He’s very small size, but he lets him know that he’s the older brother and he can still play with him at levels.

David Hirsch: So you talked about your relationship with your wife and Landon and his brothers, the older one and the four younger ones. What impact has Landon’s situation on your stagnant family?

Jeremy Warren: For our family,

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Jeremy Warren: it’s been a little bit of a challenge because they love Landon dearly, but it’s definitely put a strain on the extended family. But I’ll tell you that they love him dearly and care for him.

David Hirsch: Yeah, well, thanks for sharing. So I’m sort of curious to know what supporting organizations come to mind that Landon’s benefited from or your family’s benefited from.

Jeremy Warren: Yeah, there’s one in particular here in Tulsa called Little Lighthouse. Little Lighthouse is an organization in Tulsa that provides a school for kids that are six years old and under. And so that was very, very beneficial for him in those early years of just being able to connect, be in a classroom setting, have some therapy, learn some OT skills and just be able to connect with some other families.

David Hirsch: So let’s talk about dosa. This dad’s on special assignment. When did you found it? What was the original vision?

Jeremy Warren: I was isolating a lot at home. You know, I loved building classic cars and so I would just go lock myself in the garage and restore cars as a hobby. At that point, I didn’t really feel like I had any sort of support system. Me and this other dad had a conversation about potentially starting something, you know, getting together and just creating a support system. We came together, we had a meeting, we formed a non profit in the beginning of 2022, started raising support. We had monthly groups that were meeting and was able to form groups for dads that have a son or daughter with special needs.

David Hirsch: So you have some guys that are meeting locally here in Tulsa, and I understand that you also have some programs that are virtual. So your footprint goes well beyond Tulsa or Oklahoma for that matter.

Jeremy Warren: You know, a lot of times people associate grief with losing a child, but really you grieve the loss of the child that you thought you would have. You grieve the life that you thought you would live. And so when you can get together with other men and actually talk about that grief, but also really just helping them understand that they’re not alone, we have to understand that we have a responsibility to bear one another’s burdens. And I think with what you’re doing with the mentor program, it really helps men walk alongside other men and bear that burden with them to understand that they’re not alone.

David Hirsch: Yeah. Very powerful. Well, we’re thrilled to have you. Thank you for being part of the network. Let’s give a special shout out to Brandon Boyd in Oklahoma City for helping connect us.

Jeremy Warren: Amen to that man. Thanks so much, Brandon. Appreciate you being in our lives and being a part of this.

David Hirsch: Somebody wants to learn more about DOSA to contact you. What’s the best way to do so?

Jeremy Warren: Best way is going to be to go to our website, dosausa.org and they can find all the information they need there.

David Hirsch: Excellent. We’ll be sure to include that in the show notes. It’ll make it as easy as possible for somebody to follow up. Jeremy, thank you for your time and many insights. As a reminder, Jeremy is just one of the dads who’s 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 to your own, please go to 21st centurydads.org thank you for listening to the latest episode of the Special Fathers Network Data dad podcast. Hope you enjoyed the conversation as much as I did. As you know, the 21st Century Dads foundation is a 501c3 not for profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a taxactible contribution? I would really appreciate your support, Jeremy. Thanks again.

Jeremy Warren: Thank you.

David Hirsch: Dad to the dead. You’re not on your own. We walk this road together hard and home.

David Hirsch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast the Special Fathers 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 match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21st

David Hirsch: centurydads.org and if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad. 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 david2stcenturydads.org the dad

David Hirsch: to dad Podcast theme was written and performed by Shane Madden. The show was produced by me, Tom Couch. Tune in again next week for another intriguing conversation on the Special Fathers Network Dad to Dad Podcast.

David Hirsch: Through every season, in every stride, great dads are present. 247-365-24-7365.

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