363 – Jason Tuttle of Atlanta, GA Father Of Two, A Grief Counselor, Author and Blogger Who Very Sadly Lost Son Zachary at 15

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers 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 horizontherapeutics.com.

Jason Tuttle: What I’ve learned and what I typically tell people is in the beginning, when you get all this stuff thrown on you, yes, it’s okay to go in the garage and beat on the wall or beat on the trash can and have those moments of frustration. But after a certain amount of time you got to, you know, pull yourself up by the bootstraps, as the old statement goes. And you now got to start thinking of, what’s the best care for them. And the only person that’s going to be the best advocate for your child is you. Those doctors only know what you tell them. You know what your child is day by day.

Tom Couch: That’s our guest this week, Jason Tuttle, a father of two children with multiple physical and cognitive disabilities. Sadly, Jason lost his son Zachary in 2022. Since then, he’s dedicated his energies to write and share his feelings about grief with the aim of helping other men in similar situations. His is an interesting story and we’ll hear it on this week’s Special Fathers Network Dad to Dad Podcast. 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 short messages. First, I’d like to invite you to attend the 6th Annual SFN Dads Virtual Conference taking place via Zoom on Saturday, May 10th, at 8:00am Central Time. We have a great roster of speakers and there will be plenty of time for breakouts to meet like-minded dads who are committed to their children and self-improvement. Secondly, the Special Fathers Network Mastermind Group Experience is the most comprehensive program the 21st Century Dads foundation offers. Dads raising children with special needs, meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books and sharing heartfelt challenges. One of the highlights of the year is attending an in-person weekend retreat scheduled this year from September 5th to the 7th. As you think about the year ahead, I invite you to join one of the existing or soon to be formed SFN Mastermind Groups and join a group of like-minded dads to become the best version of yourself. It might just transform your life like it’s done for so many others. For more information please go to the Show Notes or Simply go to 21stCenturydads.org.

Tom Couch: Now let’s listen in to this conversation between Jason Tuttle and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Jason Tuttle of Atlanta, Georgia, who’s a father of two medically fragile children, a former physical education teacher who is now a speaker, author and grief blogger. Jason, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Jason Tuttle: Thank you so much for having me.

David Hirsch: You and your wife Jennifer have been married for 21 years and are the proud parents of two children, Samantha, 16, who is non verbal epileptic, wheelchair bound, and has severe neurodevelopmental delays, and son Zachary, who very sadly passed away in January 2022 at age 15, who was diagnosed with Eagle Barrett syndrome, was non verbal epileptic and also had severe developmental delays. Let’s start with some background. Where did you grow up? Tell me something about your family.

Jason Tuttle: Okay, so most of my childhood I grew up in Mobile, Alabama. However, I was born actually of Green Bay, Wisconsin, in a little town called Marinette, Wisconsin, which is practically almost Canada. It’s way up there. And then because my father and his job, we transferred from different mills that he worked at because he worked in the paper industry. So we left there, we went to Marysville, Washington, which is north of Everett, Washington, 1979, 1980. We were there when Mount St. Helens blew up. And luckily we were on the western side and not, the eastern side of that volcano. in fact, I think I’ve got some of the ash in a jars in my house somewhere still to this day. After that, we then moved down to Mobile, Alabama, which, for the company that my father worked for, the headquarters was in Mobile. So it was basically for him coming home because my parents and my two older brothers, they all lived in, were born in Mobile before he got transferred up to Marinette. So it’s like we did kind of a, continental circle, if you will.

David Hirsch: Yeah. Well, thanks for sharing. Is your dad still alive?

Jason Tuttle: He is. He is currently 80 years old and raring to go at 80 years old.

David Hirsch: I’m sort of curious to know what type of relationship do you

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David Hirsch: have with your dad?

Jason Tuttle: I have a much closer relationship with my father as out of college, as an adult versus say, as a child. Not to say that our relationship was never bad. I don’t want to imply that. It’s just I was young, my father was working. he was always doing something with the work he was at. I mean, he was there when he needed to be. But I have a much better relationship now that I’m an adult, and we have a lot, lot more things that we, you know, have in common, if you will.

David Hirsch: Great. I’m sort of wondering if there’s any important takeaways, perhaps lessons learned that, you’ve tried to incorporate into your own parenting style that you learned from your dad?

Jason Tuttle: Sure, certainly I have learned from him just through various experiences. You know, no adult knows exactly how to do this life. We’re all kind of trial and error, if you will, especially in the beginning as an adult and being married and just all these different life situations that whether you make mistakes or not, you can rebound from them as long as you learn from them and you can better yourself from them. And so that’s one of the bigger takeaways I take away from what my father’s taught me. Now, whether he knows that or not, I don’t know. But just in my observation of, of watching him, I have learned that very well, kind of in the non verbal way.

David Hirsch: Were there some examples, of things that he had to overcome as a younger man or as a father for that matter?

Jason Tuttle: Yeah, my father is recovering, from alcohol. As of Christmas this year, it will be 38 years.

David Hirsch: Wow.

Jason Tuttle: and I don’t think you’d have any issue with me saying that he has done very well in it. He is very active in the organization, helping others, which I’m very proud of him for that. I know that takes a big step. Going from what his first years were, just getting in there, trying to do his work, to then transitioning to help others. That was one of the bigger things. And honestly, I don’t know if I’ve ever told him, but that’s one of the things I saw that to most people, dealing with something like that’s a major issue. And for him it probably was. I didn’t necessarily see it that much as a child because I was kind of shielded from it. But as an adult, to understand how he got into it, what he dealt with, what the decision was to get help and to continue to help himself. That is very impressive to me as well as now being 38 years recovering.

David Hirsch: Yeah, that’s pretty impressive. You know, there’s a lot of lessons learned there about, perseverance, about staying disciplined. You know, I don’t know what it’s like to have that type of an addiction. but, you know, a lot of people can’t overcome that. It’s just too strong. Right. They fall off the wagon and, you know, their lives are ruined by alcohol or drugs or other things like that.

Jason Tuttle: Yeah, I will say that one of the bits of advice he told me that it shocked me in the moment, and I don’t know why it did, but I was about to go off to college, and my father pulls me to the side and goes, you know, you’re about to go into college. And he said, you’re. He said, you’re going to have some restrictions in a sense, but you’re going to have a heck of a lot more freedom than you’ve ever had before. And he goes, I know college is all about experimenting, and I know it’s about, you know, finding your way and all that. And he said, I just want you to understand. He said, you can drink if you want to. He said, but literally every male in our family, except for probably me and one other, have died from alcoholism. And he said, it’s unfair. He said, nobody said that life was fair. He said, but understand that if you start, there is a chance you could get addicted to it. And he said, whereas a normal person, it might take six months to a year to get addicted, because you’ve got this gene, so to speak, in your system. Yours might be three. Three to six months. It might be that much faster. So be very aware if you decide if you want to go down that road. And, I mean, he didn’t push me away from it. He was just like, this is what you need to know should you decide that you want to go this road.

David Hirsch: So do you drink alcohol or not?

Jason Tuttle: I did on and off for a long while. In my brain, I always had the limit of where I would not go over, which was typically two or three. So that was always in my brain. I can have two or three if I decide to go that route, but I’m not going over that third one, and I never did.

David Hirsch: Yeah, well, an important lesson to learn, and it’s important to understand what you’re predisposed to. Right. From, a genetic or biological standpoint, so that, you know, you’re not going to find yourself on the short end of that stick. Right, sure. Thank you for your openness and authenticity. I’m sort of curious to know if there was any other father influencers and, what, if any, influence your grandfathers played starting on your dad’s side.

Jason Tuttle: Well, in my family, my father’s parents were the older set of grandparents. If I remember correctly, my grandmother was born in 1899, and my grandfather was born a, year or two before. So, I mean, they were. I mean, they were definitely the older of the two compared to my Mother’s parents. You know, in the moment, as a child, I don’t know if there was a lot that they taught me, but as I look back, because of them living through the Depression and all of those kind of major events for our country, you know, I can remember going down their basement and seeing a wall of jarred and can stuff that they had. So, like, if, something should happen, they wouldn’t have to worry about going to the store. I mean, it was almost like a grocery store kind of wall, just floor to ceiling. So they had that and they always reused everything they fixed everything. I mean, that’s just kind of the product of the life that they grew up living. I can remember that my grandfather and grandmother were great cooks. We always ate well when we were over there. In fact, my grandfather used to make homemade peanut brittle. In this day and age, I don’t know anybody that makes peanut brittle. So that was for them. My mother’s parents were World War II age, like my grandfather was in World War II. Although he wasn’t on the front lines, he was kind of in a side country. I think his job was helping maintain some of the bombers and airplanes that they had, which he was based in India, if I remember correctly, is where they went to. I just remember when we would go down to their house in Central Florida, because he lived in Lakeland, Florida, in their retirement age. All the touristy stuff that they did in traveling that they did, and the pictures, and things they would show us from them being all over the world. And, you know, both of my sets of grandparents were very loving and understanding of their, of their grandchildren. But was I like buddy buddy with them? I don’t know if I was that, but I remember both sides very fondly.

David Hirsch: Yeah. Well, thank you for sharing. it’s a blessing to know your grandparents firsthand. And it, sounds like they both were individuals who were successful in their own right. And they, like you said, they lived through a different era. That, Depression era. Ah. Before that, World War I, after that, World War II. And, you know, it does something to you, right, to see the havoc and realize that, you know, freedom isn’t free. And there’s a lot of things we just take for granted today just because it’s been, you know, sort of a long time since, you know, we’ve had any thing in consequence happen, that the United States has been involved with. You probably have to go back to 9/11. Vietnam and Korea were probably the two more consequential things that happened. But most of that took place before you or I were born. So any other men that played an influential role in your life in addition to your dad or your grandfathers?

Jason Tuttle: You know, seeing as I’m a former physical education teacher, I always kind of likened being to the coaches that I had. If anything is just seeing of something I could potentially do when I got older, something that I knew that I liked to do, which ultimately I did go into being a physical education teacher for nine years. But outside of probably my family, not a ton of male figures.

David Hirsch: Well, let’s talk about education. My understanding was that you took, undergrad degree in physical education from the University of West Georgia. And then before that you went, to Huntington College. And, were you a Methodist youth pastor? Is that what I remember?

Jason Tuttle: Well, I started at Huntingdon. I wanted to become a United Methodist youth pastor. But my sophomore year, something that year just changed in my brain and I was just like, you know, I just don’t know if I want this route for my life. In fact, I had actually interviewed and gotten the middle school youth pastor position at Montgomery, First United Methodist Church in Montgomery, Alabama in 1996. And the day after, I called him back and rescinded my acceptance because there was just something in me that said, it’s great that you want to do this, but you’re just not ready for it. Even though I said yes, I wanted to do it. And I mean, they were understandably upset, but I mean, I came back and said, hey, I know you’re upset about this. I know you’ve spent time and to interview and all that, but I hope you understand me saying I don’t want to lead whatever direction your church is going into in a wrong direction. And I just feel like

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Jason Tuttle: like after I’ve said yes, that maybe I’m just not ready to lead it the way you want to go. And so if I remember correctly, he was okay with that. But initially they weren’t happy, I’m sure.

David Hirsch: Well, thank you for sharing. So, you mentioned you were a PE Teacher. I think that was for about nine years in the Fayette county public schools. And then from there, my understanding was that you, worked for a short bit of time with Chick Fil A, which is a very, very well respected company.

Jason Tuttle: Yes.

David Hirsch: A bunch of our dads, are also Chick Fil A former employees. And, most of the years recently you’ve been a personal caregiver.

Jason Tuttle: Yes.

David Hirsch: Then, more recently you’ve become a special education peer professional in the, Coeta county school district. We’ll Talk a little bit about it. That you’re like a grief counselor with your blog and the work that you’ve been doing since Zachary passed away. And I’m wondering, when you first started out as a PE teacher, did you have a sense for where your career was going to take you?

Jason Tuttle: No, not really. The situation that kind of got thrown into my lap, if you will. I graduated from University, of West Georgia with a degree in health and physical education. And the wonderful and probably bad thing about physical education positions is it’s a position that when you get into it, especially if you’re good at it, you can do it for 40 or 50 years. So, what I’m implying is for the new people that are coming out that are wanting to get into these positions, they’re hard to come by, especially at a good school, because you’ve got some legendary or beloved coach that’s there. And when they do retire, everybody and their brother wants to go there. So what’s left? What you would call some of the harder school districts that you have to go into to kind of make your name. So I graduated and couldn’t find anything. Couldn’t find anything. And so I had to make a decision. And at the time I was working summers for Delta at Atlanta Hartsfield International Airport. So I graduated in 2000. I couldn’t find anything. So I said, I got, I have to live, I need to make a paycheck. So I got on full time as a ramp agent, the one that brings the plane in, offloads it, loads it, that kind of thing. And I did that for two years. And then it just so happened that the school that my mother was going to was a brand new school because my mother was in education as well. She was following the principal there. The PE teacher that was supposed to follow them decided at the last minute that he didn’t want to teach anymore. My mother immediately called me and said, you need to hand deliver your resume to this person today. And so I did. I got the interview, I got hired, and that’s kind of how all that started. But in the beginning it was more I got the job. Now I’ve got to plan a program around, you know, what I want to do for K through 5th grade and how I’m going to do this. And so at least in those first couple of years, it was kind of survival, if you will, going. I’ve been taught all this stuff, now I’ve got to use it. How am I going to do it?

David Hirsch: Yeah, I love it. Thanks for sharing. So I’m sort of curious to know, how did you and Jennifer meet?

Jason Tuttle: Well, we met the non traditional way. Especially. Well, in today’s age, it’s pretty common. But when my wife and I met in 2001, I was working for the airport in Atlanta. I had a fixed Wednesday, Thursday shift schedule, which for where I live in Atlanta, nothing is going on on a Wednesday and Thursday night. So I got on my computer and this was back in the day when like chat rooms were, popular online. And so I got into a Yahoo chat room of all things. There were three different rooms for the Atlanta area. And I got into each one and I basically said, is there anybody from, you know, X side of Atlanta? at the time my wife was online and she immediately messaged me and said, hey, I’m from this city, which was pretty close to me. And we chit chatted for, honestly about 15 minutes. And I finally just said, look, you know, this is the kind of work I do. I’m off today. I said, I haven’t gone out in several, days off. And I said, I really just want to get out of the house. Would you like to meet somewhere public? I said, it can be very public if you’re not comfortable with it. I’m okay with that. I said, I just don’t want to be in these four walls. I said, I’m kind of going stir crazy. And to my surprise, she goes, sure, where do you want to meet? And we met at a Waffle House not far from where I lived. We met up there and we, if I remember correctly, it was like 8 o’ clock at night. We sat there probably four hours talking. From that point forward, we’ve been together ever since I proposed to her a year to the day that I met her.

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Jason Tuttle: In fact, she disagrees with this statement. I literally told her that night that I was going to marry her. And to this day she goes, you never told me that. I said, you just never heard me. And I told her, I said, I will propose to you in a year to the day. I did.

David Hirsch: Yeah, I love that story. So you took a little bit more away from the Yahoo chat room and your visit to the Waffle House than the average guy.

Jason Tuttle: Yeah.

David Hirsch: Well, let’s talk about, parenting, and special needs.

Jason Tuttle: Sure.

David Hirsch: And I’m sort of curious to know. Prior to Zachary and Samantha’s births, did you or Jennifer have any connection to the disability or special needs community?

Jason Tuttle: We did not. The interesting thing about that is we got married. We got through our full honeymoon year before we Decided we wanted to start having a family. We decided that we wanted to start because we were both a little bit older, mid to late 20s. She was almost 30. She came to me and said, well, if we’re going to have kids, I want to have whatever kids we’re going to have by this age. At that point, we were ready to start trying. I said, well, then, let’s go for it. As we were trying, my father got real big into ancestry.com and doing, you know, just family tree stuff, and he went back 10 generations, so we didn’t have anything in 10 generations on my side. My wife’s family happened to go through theirs, and there was nothing in five generations on her side. So at the time that we were deciding to have a family, we had no reason to believe we were going to have kids with any issues, let alone the multitude of issues that we eventually had.

David Hirsch: Yeah, well, thanks for the backstory. What were Zachary’s diagnoses and how did they come about?

Jason Tuttle: My son’s rare condition is called Eagle Barrett Syndrome, or affectionately known as prune belly. It’s one in 40,000 births when he was born. They don’t officially know what causes it. They do know it’s related to a kidney issue. My son was born with one kidney. That one kidney did sustain some damage while in utero. So the question once he was born was always, does he have enough good kidney, the bigger he gets to full adulthood to sustain normal function? So that’s kind of the general sense of prune belly. There’s a lot of other factors and symptoms that go into it. We didn’t know in the moment. But later on, probably six months down the road, we realized he has developmental delays. And as times went on, they became severe developmental delays. One day I was just goofing off with him, and I was kind of doing, like, what a father would do, kind of toss him up in the air a little bit and catch him. And he would giggle. And the last time I did it, I think he was three years old, two years old. The last time I did, I went to catch him, and he immediately went into a grand mal seizure.

David Hirsch: Oh, my God.

Jason Tuttle: The typical, arms out, shaking, rigid, couldn’t get his attention. So as you can imagine, as the first seizure I ever saw, it freaked me out. And we learned at that point that he had epilepsy. And he never, at least at that point, kids, can outgrow it, but he never did. So he had epilepsy. We knew from the beginning, because he had areas of missing white matter in his brain just from, you know, being formed in the womb, that he would probably have speech issues which turned out to be non verbal. He had areas in his cerebellum that were having issues which, that’s the area that deals with, I believe it’s talk and balance and kind of equilibrium. So he could walk with assistance, but not by himself. We found all that out probably in the first two or three years of his life.

David Hirsch: Wow. And lightning struck twice. Right. Because Samantha wasn’t born a lot longer after, Zachary was. And what were Samantha’s situation or diagnoses?

Jason Tuttle: In the beginning she was, it’s going to sound bad to say, but in the beginning she was the normal child. I mean she was born. We didn’t see any delays. We didn’t see anything like what our son had. However, right. At about six months, she got tested for a skills assessment test by One of the OTs that had an intern that was just practicing on her. And they told us that she had some delays. And as you can imagine, I didn’t want to hear that because I had so much going on with my son. We then took her to our pediatrician, which happens to have a special needs child. And she looked at us and said, well, I tend to agree with the, OT says, which is the occupational therapist, and I think you probably need to see a neurologist for your daughter. I think she’s delayed. And I then said, what makes you think she’s delayed? And she said, well, if you’re basing

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Jason Tuttle: her development on her brother, your son, she’s going to look normal. But if you base her on a normal timeline of just functioning and what they learn how to do, she’s delayed. It, was at that point that the ball started rolling where she started getting more delayed and it went from moderate delays to severe delays. At this point we learned not in the same fashion with her brother, but she started having different kinds of seizures. And so we learned that she was epileptic. She can say some basic words, but overall she’s non verbal. She has the same kind of brain structural issues. So she has issues with talking and her balance. And she can walk with assistance, but like her brother, she’s basically wheelchair bound.

David Hirsch: Wow. So these kids are just a couple, three years apart.

Jason Tuttle: Correct.

David Hirsch: And I’m wondering if you could roll the clock back to one. She was maybe a year or so old. What were some of the fears that you and Jennifer had as parents to two children with, you know, all these things going on?

Jason Tuttle: Well, in the beginning, it was just the unknown. We know a lot of people that have kids with epilepsy and developmental delays and nonverbal and, some of you, what I would call your typical things, that’s big in the disability community. But what set us apart was the fact that my son had a rare condition and just the combination of issues that we had. There was nobody probably in a thousand mile radius that knew exactly what we were going through. And so the fear of the unknown, how am I going to take care of these kids? How are we going to provide, whether it’s just emotionally, mentally, even financially? Because in the beginning we didn’t have the government assistance that we do now. And we were thinking, well, how are we going to pay for all this? Because anything in the special needs community, as a lot of people know, if it has special, needs or adaptive written on it, it’s probably 40% more in price just because it’s got that label on it. And we were thinking, how are we going to provide for them? We’ve never been, why us? But in that moment, we were going. We had no reason to believe we were going to have issue, any issues. We’ve had nobody in generations to have any issues. Why are we getting two kids born almost two years to the day apart having almost identical issues? You know, why are we being chosen for this? So that was more what we were going through. And then what I see now that I didn’t see back then was we were in a state of grieving because we were grieving the life that we thought we were going to have versus the life we got.

David Hirsch: Yeah, very profound. Was there any meaningful advice that you got from others that helped you put these things in perspective or help navigate these tricky waters?

Jason Tuttle: We got bits and pieces here and there. For those of us in the disability community, there’s an uphill curve that you learn. There’s a lot of us in the beginning, that when you get into it, you’re kind of, I want to say, almost timid, if you will. You believe everything the doctor says, you don’t question them, you believe everything all these different specialists say, and you don’t really put up a fight, if you will. But then the more you get into this and the more you understand your child’s care and what you think is best for them, you start, I hate to say it, growing a backbone. Like, there’s been several times me and the neurologist have butted heads a lot and she would come in and do something. I go, no, I’m not going to do that. That’s not what’s good care for my son. I know my son better than you do. I’m not doing that. And so we would have arguments about it. You know, I just go, that’s fine that you have a degree on the wall, but you’re not. And like I told one of them, I said, you’re not God’s gift of medicine. I can Google what, you know, I had to change doctors after that statement, but that was fine because we didn’t get along anyways. But what I’ve learned and what I typically tell people is in the beginning, when you get all this stuff thrown on you, yes, it’s okay to go in the garage and beat on the wall or beat on the trash can and have those moments of frustration. But after a certain amount of time, you got to kind of dry yourself up. You gotta, you know, pull yourself up by the bootstraps, as the old statement goes. And you now gotta start thinking of, what’s the best care for them. And the only person that’s going to be the best advocate for your child is you. Those doctors only know what you tell them. You know, what your child is day by day. And so those were the kind of statements that I kind of gravitated towards, was, yeah, it’s intimidating

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Jason Tuttle: that doctors have all these degrees and all that, but at the end of the day, you know, they’re not God’s gift of medicine.

David Hirsch: Yeah. Well, I think the most important thing you said is that you know your child better than anybody.

Jason Tuttle: Yeah.

David Hirsch: Doctors and therapists, very well intended, well educated. In most cases, you know, they’re just making observations. And like you said, they’re relying on information, anecdotal information, I guess.

Jason Tuttle: Uh-huh.

David Hirsch: Trying to help put the pieces of the puzzle together. But, you know, you’re with your child pretty close to 24/7, you know, you know, a lot more than they do. Not because you’re smarter, but just because of the day to day experience. And I think that’s something that you can’t just read about. I think it’s something you have to experience. You know, you develop a little bit more confidence about your own ability and your understanding of your child.

Jason Tuttle: Sure.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children, 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: So when you were looking back on things, were there some important decisions that you and Jennifer made that you can look back on and say, well, yeah, if it wasn’t for this or if it wasn’t for that, I don’t know where we would be today?

Jason Tuttle: Now, my son was the more medically fragile of the two of my kids. He was the one that was in and out of the hospital a lot. I did all the physical medical care, I did all the hospital stays, that end of the special needs life, whereas my wife did the government dealing with insurance companies on that end. And after knowing my son enough, I started to learn his nonverbal cues. In fact, I got to a point where the moment he made a specific cough, I knew he was getting sick. There was just a sound there that I could. Once I heard it, I went, oh, I need to start my protocol and I need to make sure I get ahead of this, otherwise we’re going to end in the hospital. So there were multiple occasions where I had to make split second decisions to get him to the hospital. I know at least once before he passed that I know it saved his life because when we got up there, not only did he have pneumonia, we found that he had RSV on top of it and respiratory distress on top of it. And that was our longest stay. That was like 12 days in the ICU. It started with just a specific sound of a cough that I heard. And I went, something’s not right. And I just started my protocol and I, when I couldn’t get things to where I thought they were okay, you know, I looked at my wife, said, I’m taking them up to the hospital. Something’s not right.

David Hirsch: Yeah, well, it sounds like you had a good intuition, after a while about, your son and picking, up on the cues, if you want to call it that, not to focus on the negative, but what are some of the biggest challenges that you’ve encountered related to Zachary and Samantha’s situations?

Jason Tuttle: The biggest one is going to be the fact that they’re non verbal. Whereas you and I, when we’re not hurting or not feeling well, we can say, well, my chest is bothering me, my arms bothering me, or some part of your body’s bothering you. Whereas in the beginning, a lot of my frustration and internal anger, if you will, was. I had to guess, I had to go through a thousand different things every time something happened to figure out exactly what was going on, especially if it wasn’t something that I hadn’t dealt with before. And even today with, with his sister, like right now we’re going through a phase where she’s not wanting to eat a whole lot and it could just be because we hadn’t been real active lately. But there’s no other signs to tell me there’s anything wrong in the moment other than the fact that she’s just not real hungry. So that’s the biggest frustration for me is because as you can tell through you and I talking, I can run my mouth and I can talk. And the irony of me being able to run my mouth is the fact that I had two kids that were non verbal. And so I had to forget the talking and learn the non verbal cues and the body language and remember things that had happened in the past. That was probably my number one frustration. Just every time something would happen, I’d have to go through a hundred different things.

David Hirsch: Yeah, well, thanks for sharing. We take for granted that, you know, somebody can communicate what they need or what the issue is. And if they’re not able to communicate in a traditional

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David Hirsch: way, verbal way, then you know, you’re, you’ve got to go to like plan B or plan C. It’s like, like you said, it’s almost like reading body language.

Jason Tuttle: Definitely.

David Hirsch: You know, that’s not like you read a book and you figure that out. That comes from experience as well.

Jason Tuttle: Yep.

David Hirsch: I’m sort of curious to know what impact Zachary and Samantha situations had on your marriage or your extended family for that matter.

Jason Tuttle: Honestly, the situation that was my kids probably brought my wife and I closer versus tearing us apart. You know, the statistic out there is a family that has one special needs child. I think the divorce rate’s like 70%. It’s, it’s ridiculously high. And I mean it could have changed since the last time I looked at it. And we have two kids with special needs. So, you know, I used to joke with my wife, I said, if the divorce rate is 70% for one, I said, we’ve got two, does that mean the divorce rate for us is a hundred percent? And she would just laugh and shake her head at me. But at least for us, we kind of gravitated towards each other as if we were kind of us against the world kind of mentality versus a kind of splitting a wedge between us. And because I’m a researcher and all that, you know, I was Constantly on the computer trying to educate and. And she was too. So that really helped us. My parents were very helpful in the beginning, even with all their medical issues. You know, we would inform them as much as possible and like, one day a week, they would actually watch them one day a week for us. So just my wife and I could have a break in us time and, you know, just some marriage time together, if you will. Just because this life is so all encompassing with just one, let alone two. So my parents were very understanding, and even to this day, after my son had passed, with my daughter still around, they were always very loving and very helping and, you know, always willing to do what they could to alleviate at least something for us. My wife’s parents, they were always very loving. They were less hands on, in a sense. Nothing against that. They just. I don’t think they quite understood what we were really dealing with, let alone anything else related to their grandkids. So it was. We kind of had two sides of the spectrum. Both loved our kids very much, but my side just happened to be a little more active and interactive with them on the care side of it versus my wife’s parents.

David Hirsch: Yeah. Well, thanks for sharing. And I take away from what you just described is that you’re very fortunate that the situation brought you and Jennifer closer together. And, you were very fortunate to be able to get some respite, even if it was just one time a week, you know, when your parents were able to watch, your children. Because that’s the thing that goes to the wayside in a lot of cases. You know, there’s very little opportunity for us. But so if it’s not family, you know, you’re relying on not for profits or, you know, having to pay people to come, and help, you know, give you some relief.

Jason Tuttle: Yep.

David Hirsch: I’m thinking about supporting organizations. And one of the things that I remember from a prior conversation is that you told me something about Bert’s big adventure.

Jason Tuttle: Yes.

David Hirsch: And I want to know what’s the backstory on Bert’s. Who is Bert? And then what was Zachary’s experience with that?

Jason Tuttle: So I live outside the city of Atlanta, Georgia, and in Atlanta, Georgia, on the north side, there’s a radio station called Q100. Their flagship morning show is what they call the Burt Show. Well, the namesake of the show, Bert, one of the stations he worked on in Dallas, if I remember correctly, he worked with a well known namesake in there called Kid Craddock, who unfortunately has passed away since then. And he had A similar kind of Bert’s Big Adventure style organization. Bert’s Big Adventure is an organization that every year, through an application and nomination process picks up to 12 families to win a trip. The kids have either chronic or terminal illnesses. They have to be at least five years old and they have to have never been to Disney World at all. And they have to not be able to financially afford a trip like what they offer without the assistance of Bert’s Big Adventure. Either individual families can apply for it or a family can be nominated for it. They have a panel of organizational people, they have the Bert show people. And then they have all these doctors and people in the medical industry and they go through all the applications and decide

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Jason Tuttle: which 12 families are the most deserving. What it is is it’s an all expenses paid trip for it’s five days down at Disney, World in Orlando. Literally everything is taken care of. They come and pick you up at your house. They take you to the area where they’ve got their private jet. The private jet flies you down to a private airspace down there. They take you in their private cars to. The place that we stayed was, it was a very high end resort at Disney World. Literally you get all the bells and whistles, there were bells and whistles that we had that I didn’t know were possible. One of the things that we did, we went over to the Epcot area, we went the back way in, we went to a Mulan experience. It was just our crew. We got behind the scenes look of how they did everything and what they did, you know, some of their professional chefs that made these professional looking desserts that look like characters literally from like 6:00am to like almost like 8:00 clock at night every day. It’s non stop. And so you do this whole trip for five days and then you come home, you get into the hangar that they come to and they literally throw a party right there for like that last hour and they give you this tub of just toys and all these things related to your kids that they might like that you take home. And at that point you’re part of the Bert’s Big Adventure family. However, from that point forward, every quarter of every year, so four times a year they have reunion adventures that they do that. If you’ve already been on that trip for life, anybody that was in your family that went on that trip with you can go to these adventures, to have reunions with the year that you went on and every other year that’s went on this trip. So for example, we have been to Atlanta Hawks games. We’ve been to Atlanta Braves games. In fact, this last Christmas reunion was actually in the Delta Club at Truist park at the Atlanta Braves Stadium. If you’re someone that pays for those season tickets, they’re ridiculously priced tickets. And to get in there, whoever gets in there has some cash behind their name. It blows my mind. Some of the places that we get into the Bert’s Big Adventure does. And, you know, I’ve told them several times, you know, I profusely thank them. I said, as a normal person, I said, there’s no way I would have ever been able to get into this. No way.

David Hirsch: Yeah. Very impressive. I’ll be sure to include some information about Bert’s in the, show notes, so it’ll make it easy as possible for somebody to learn more about that. So I’d like to talk, for a couple minutes about this letter to Zachary, the blog that you started on Facebook, which is morphed in a couple different ways. And my recollection was that you started doing this really for your own therapy or peace of mind at, or around the time Zachary passed away in January of 2022.

Jason Tuttle: Yes.

David Hirsch: What were you doing and how has it transpired?

Jason Tuttle: First of all, I’m a very big proponent of counseling or therapy. And right after my son had passed away, I, immediately started seeing my counselor again. And I had gone six weeks at that point. And it was, probably that sixth session afterwards that my counselor said, have you ever thought about journaling? She said, the reason why I’m saying this is because journaling is kind of a mindfulness activity. It’s something to get it off of your shoulders. She said, you don’t have to share with anybody. She said, you can write it out, like, physically and burn it. You can put it in a Word document, then delete it. She said, you don’t have to share it. So that sat on my side table for probably nine months after the fact. And then one day I was watching a Facebook reel, and I forget what it was about, but something struck me in it, and it was a gut punch. And I just started bawling, crying, because it reminded me of my son and just the tough time I was having. And I just, out of the blue, I opened up a Word document and proper, like, letter writing form. I wrote a date name and Dear Zachary. And I just verbally vomited on a page, if you will. And I did that several times a day for weeks. And from that point, it was one of Those things. I’d found an online group on Facebook, and I got to know the admin there very well, and I said, do you mind if I post this here? And without skipping a beat, she said, we never get men in here. We would love for you to post in here because, it’s so rare that a man opens up and shares his emotions. And so I said, okay. And so I posted it. And I kind of braced myself because even though it’s a noble thing, it’s still the Internet. I had to brace myself in case I got negative feedback. Luckily, I didn’t. And I immediately

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Jason Tuttle: got responses like, you know, we’ve never met. I’ve never talked to you. I’ve never expressed to you my feelings about grief. I’ve never told anybody about the grief deep down inside. And this letter you wrote word for word is exactly how I feel. I could have not said it any better than what you just, explained on the page. And I said, you know, thank you, and I appreciate it. You know, my son inspired me to write it. And I kept doing that for several weeks. And then one day after I kept getting the same response, I went, you know, maybe I’ve got something here because I keep getting these same really good responses, and maybe I can grow this. And as anybody that writes like this, especially in the grief community, you get all your. Well, have you thought about writing a book? Have you thought about doing a podcast and all of those ideas? I said, you know, I appreciate, but I don’t think I’m in the mental space for that right now. And finally, the last idea was, have you thought about doing a Facebook page? And I said, well, what’s that? And they said, basically, you know, you go to any of your, like, favorite businesses that have a page on Facebook, it lists just information about them and just, you know, sales and things. Whereas you could do it as a blogger, you don’t necessarily have to create new material. You could just copy and paste what you’ve already got. When you write something new, you can just put it on there. And so I did that. And from there, through just networking and meeting people in the grief community, it started to grow, and I started getting a following. And, you know, I initially did it to share my emotions of, grief, but I did it to connect with other men, because I couldn’t find a whole lot of men willing to maybe not understand the exact same thing that I was dealing with, but more kind of the ballpark. And I couldn’t find it anywhere. And it was just frustrating me So I, in my head I went, well, instead of complaining about it, I need to do something about it. And so I started doing that. So in the beginning it was just for men, but in my brain I went, well, I want to start gaining, ah, a following doing this, especially if it’s as good as everybody says it is. And so I started opening up to more and more groups, to where I eventually opened it up to spouses and girlfriends. And it sounds kind of odd that I opened it up to them last, but I did that because my thought was, well, if men aren’t coming to my page, at least their spouses can find my page. And in an indirect way, it can get to them, Meaning they come onto my page, they read something they like that they feel like they agree with, they tell it to their spouse, and they say, well, if you don’t want to take my word for it, you can go to the page yourself. Here’s what he’s written, here’s other things that he’s written. My thought was, if I can’t get the man, I want to be able to give women a glimpse into the male mind while they’re grieving, to give them an understanding of what’s going on and to help them create a space to where it can help the male in their lives open up. And so that’s kind of what it’s evolved to at this point.

David Hirsch: I love it. Thank you for sharing. I also understand there’s a coloring book that came out this past year. What’s that about?

Jason Tuttle: There is. I always knew that I wanted something in my hands and tangible. So I came across a publisher, ironically, in one of the podcasting groups that we’re all familiar with. And we got to talk, and we were throwing ideas back and forth, and she said, well, have you ever thought about a coloring book? And I thought, well, that’s an unusual idea. And I’ve always been a little right of usual, anyways. And so I said, well, let’s talk about that. And so we got to talking, and basically what we did was we set up a fake website, we set up a survey, and I threw it out to the grief community. And I said, look, I’m coming up with a community effort, and I’m coming up with a coloring book. And all I want you to do, if you’re interested, it costs you nothing to be a part of this. Go to this website, fill out the survey. It’ll ask you who you are, where you’re from, kind of your kid’s first name. I said, you don’t have to give full names, attributes about your kids, special things about your kids, maybe a favorite saying, a favorite poem about them. You’ll fill all this out, you’ll send it to the publishers, they will then give this information, and they’ll either make a collage page or they’ll make a full coloring book scene from your information that you can color. And then on the back, it’ll list your son or your child. It’ll list kind of a, positive, like, paragraph about him. It’ll be kind of a living and active and interactive memorial that we can all have that can be put on what I would say is life’s bookshelf, if you will, that will outlast us all. And so I had a huge response

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Jason Tuttle: to that. And what I thought was only going to be a small coloring book turned out to be 72 pages. The first, probably four or five are like my family, just because I’m the namesake of it, but literally every other family in there I know personally, I’ve talked to online, I’m connected with, on social media. I kind of know their story, and so they’re all in there as well. On top of that, those people that I’ve run across, I’ve done podcasts with and have foundations and those kind of things on the backs of their pages actually advertises for them. They have their website, their podcast on there. And so for those people, I told them, I said, look, it costs you nothing to do this. I said, the only cost to you is going to be you purchasing the coloring book. And I said, where can you advertise for 1499? You can’t. Nowhere. And so when this comes out, the more I promote it, you promote it, and everybody else promotes it, the more people know about it and the more your podcast, your foundation, gets out there. And those people kind of jumped on it. So outside of it being kind of a tangible, living, active and interactive memorial, it was something that I wanted to give back to the grief community, because the grief community, in the beginning, if I hadn’t had their help, I wouldn’t be where I am today. It was something I wanted to do to give back to them. And lastly, because I have a daughter, I thought, how am I going to explain the concept ideas of grief to my daughter whether she has delays or not, and how her brother’s no longer with us? So the idea of the coloring book came up of, you know, she can go to a coloring book page, and I can go see this page that you’re coloring this boy was someone else’s son. And like your brother, they passed away kind of at the same thing. And so they understand what we’re going through. And then on top of that, while she’s coloring, it gives me kind of that lag time, if you will, so I can quickly think of ways to explain these difficult topics to her. And so that was kind of the ballpark of letters to Zachary.

David Hirsch: Yeah. Well, it’s brilliant. I love what you’re saying about this, Letters to Zachary coloring book. And, you know, it’s, something simple, but it’s something that, could be very useful, particularly for families with young children. Right. To be able to, engage them in the ways that you were making reference to. Sure. So I’m sort of curious to know what role spirituality has played on your journey.

Jason Tuttle: I am a person of faith, like all of us that are people of faith. I have by no means been perfect in this journey. You know, in just dealing with the grief and the stages that go with it. my stage of grief is pretty much internal anger. It’s not directed anybody. It’s more because I was the caregiver. I was always the one that took care of them. I was always the one that made them better. There were several times that I was always the one that saved them. And so faith plays a role in that, in the sense of when I know I’m getting kind of to that edge, I try to seek my belief system and my faith to help get me back on track. You know, the way someone put it to me was, who better to understand the loss of their son than the Lord Almighty himself? When they said that to me, it hit me like a ton of bricks, in the sense of. I’m forgetting, in the religious aspect, Jesus was basically sent to earth to die on a cross, the Son of God. So even though it’s hard and it’s devastating and it’s all the emotions you can think of, who better to understand that concept than the Lord Almighty himself? I’m not alone in this journey, because the very tenet of my faith is the very thing I’m dealing with.

David Hirsch: Very powerful. Thank you. I’m thinking about advice now, and I’m wondering specifically what advice you can offer a parent or dad who might find himself with a child that has a diagnosis.

Jason Tuttle: I would tell them, well, I’ll say it this way. In my personal life, I’m very blunt. And, for anybody listening to this, it’s not personal. But I would tell you in the beginning, it sucks. It really does. It’s a gut punch. It’s not what you were expecting. It’s hard to deal with. There’s a lot of grief in this process because the life you thought you were going to have versus the life you got, it’s just a process. And just like in the grief of me losing my son, the only way to deal with grief is to grieve. So you have to grieve it however long that is. For me, it was a short while

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Jason Tuttle: because I knew I had to do what was best for my son and my daughter. You know, in the beginning, have your moments go out. You know, if you’ve got one of those punching bags, punch on a punching bag, kick a trash can, whatever you got to do to get it out. But once you’ve got it out, it’s time to put on your big boy pants and pull up your boots and you got to get to work is what you’ve got to do. You can’t do it the whole time. And the quote that I came up with that I tell people all the time that I 100% go by is, though I strive for the mountaintop, it is the valley in which I live. And what I tell people is, yes, we want to have all those glorious moments where we’ve gotten to the summit, we can see everything and everything’s great and all that, but it’s living in the valley where we have these hard moments that teach us what life is all about. And it teaches us perseverance enough to be able to climb that hill again to get to the mountaintop.

David Hirsch: Very powerful. Why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?

Jason Tuttle: Because I think I’m at a point to where I have enough wisdom, if you will, that I can help others through either just the general special needs journey or us, more so on the grief side of it. Because even though I know probably four or five other guys that do this, in the grand scheme of thing, of the whole grief arena, if there’s only five or six of us compared to the thousands of female groups out there, I want people to understand that they’re not alone. You know, men are funny. A lot of men won’t do it on. They won’t be the first one, but the moment they see someone else do it and it’s working out well for them, then they’ll do it. So if I have to proverbially sacrifice myself to show to another guy that it’s okay to do this, then that’s what I’m here for.

David Hirsch: Yeah. I love it. Thank you so much. We’re thrilled to have you. Is there anything else I’d like to say before we wrap up?

Jason Tuttle: I would say to those guys, especially on the grief front, it’s okay to share your emotion now. I’m not saying that you have to share it out in public. You can be in private in your own space. Am I saying that I want you to come cry on my shoulder? I’m not saying that at all because most guys don’t want to do that. Although I’m one of those guys that I will offer it, but that’s not what I’m asking. Give yourself a chance to be vulnerable, to open up, if anything, to your significant other. And what my goal is to help you is to show the wives, the girlfriends, the sisters, that kind of thing, those things that can make it easier and to make you feel more comfortable to open up. That’s what I’m m hearing. I’m a mediator, if you will, to help them understand what it’s like for us as men. What it is to open that door, to get in there. That’s what I’m here for.

David Hirsch: Yeah. Well, brilliant. Thank you. Let’s give a special shout out to special father’s network friend Rena Friedman Watts of the Better call Daddy podcast and who was featured in episode number 351 for helping connect us.

Jason Tuttle: Well, thank you.

David Hirsch: If somebody wants to learn more about your work or to contact you, what’s the best way to do so?

Jason Tuttle: Sure. The easiest place that has everything there would be letterstozachary.com and Zachary is spelled Z A C H A R Y. I know there’s confusion where I’m at, where people want to do E R Y , but letterstozachary.com that’s got, you know, a little bit about me, my media appearances. It’s got the coloring book on there. It’s got, at this point, at least one other book about grief on there. I’m hoping to add more. It’s got grief podcasts on there for those that are interested that may be in kind of my situation. It’s got all my social media. My main page on social media by the same name of letters to Zachary is on Facebook. It is a blog, but I’m on Facebook, Instagram and TikTok all under the same name. You can get to it from my, Letters to Zachary website. I will say I never thought at my age I’d be doing TikTok videos. But here we are.

David Hirsch: Hahaha. We’ll be sure to include that information in the show notes so it’ll make it as easy as possible for somebody to follow up with you. Jason, thank you for taking the time and many insights. As a reminder, Jason 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 Century Dads. Thank you for listening 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 Dads foundation is a 501c3 not for profit organization,

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which means we need your help to keep our content free to all concern. Would you please consider making a tax acceptable contribution? I would really appreciate your support Jason. Thanks again.

Jason Tuttle: Thank you so much.

Tom Couch: 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 21stCenturydads.Org.

David Hirsch: 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 group 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 david@21stcenturydads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.

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