062 – Non-Profit Leader John Wagner wrote a book about his son David who has Down Syndrome.
On this Dad to Dad podcast, host David Hirsch talks to John Wagner, a father of three, including David who has Down Syndrome. John has also written a book his about his family called “Perfect: Sacred Stories From The Heart of a Dad,” and he’s our guest on this Dad to Dad podcast, presented by the Special Fathers Network.
Dad to Dad 62 – Non-Profit Leader John Wagner wrote a book about his son David who has Down Syndrome.
John Wagner: Let me tell you what she did say in the hospital. Literally like the first words out of her mouth, when we, I found out was I will raise this kid. I will love this kid. I will be this kid’s mom. And I’ll never be happy again. I mean, when we look back on that, it’s like, it couldn’t have been further from the truth. Gaye would say that boy has been my light, my life, my joy. The greatest gift God ever gave us.
Tom Couch: That’s John Wagner, a father of three children, including David, who has down syndrome. John’s also written a book about his family called perfect sacred stories from the heart of the dad. And he’s our guest on this dad to dad podcast.
Here’s our hosts, David Hirsch.
David Hirsch: Hi, and thanks for listening to the dad to dad, podcast, fathers, mentoring, fathers of children with special needs. Presented by the Special Fathers Network.
Tom Couch: 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 connect with mentor fathers in a similar situation.
It’s a great way for dads to support 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’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 let’s listen now to David Hirsch’s conversation with special father John Wagner.
David Hirsch: I’m thrilled to be talking today with my friend, John Wagner of New York city, a father of three and a nonprofit leader. John. Thank you for taking the time to do a podcast interview for this special father’s network.
John Wagner: You’re welcome. It’s my privilege.
David Hirsch: You and your late wife, Gaye were married for 32 years.
One of the proud parents of three children, Michael 27, Jesse 25 and David 21 who has down syndrome. Let’s start with some background. Where did you grow up? Tell me something about your family.
John Wagner: I grew up in the DC area, a little South of DC. I was, um, Kind of raised in a typical suburban family. I’ve older sister and a younger brother.
My dad worked for the phone company for 35 years, never switched jobs. We lived in the same house. I grew up with the same kids. I went to first grade with, I graduated high school with. I love sports growing up and I enjoyed school to some degree, but, uh, really just enjoyed mostly the, I guess, the social part and hanging out with my friends.
But, uh, yeah, it was a great place to grow up. My family owned a little beach place down on Chesapeake Bay and we used to spend a lot of time, water skiing and catching crabs and, uh, fishing and all that. So I had a great childhood. Growing up my grandfather, I was a fireman with the DC fire department and he retired at 50.
If you can believe that on disability. So I felt like I had two dads. I mean, my, my grandfather was almost like my. Sports that he came to all my games and hung out with me, uh, quite a bit and pitched them all around. And he was young. A lot of people thought he was my dad and he was a great guy. It was a great guy.
He loved to fish who he would go down to the Florida keys in the winter and be down there for six months. And all he do is get on his boat every day and go out and fish. And so I’d go down there for. Yeah, our family would go down there for, you know, a week or two at a time on spring break. And we just had an amazing, so I had a great childhood.
Yeah. And still very much connected to my, my family. My folks are still alive, both of them. And, um, my sister lives right near them on the Chesapeake Bay. And I have a brother living in North Carolina.
David Hirsch: Excellent. Well, um, it doesn’t sound Beaver Cleaver, but it sounded like a typical upbringing. Um, and dad, grandparents are involved.
You have siblings, so you’re, you know, common experiences that you’ve shared with a lot of people as you’re growing up. I’m wondering how you would, uh, describe your relationship with your dad, you know?
John Wagner: Uh, I would say great now. Um, it was challenging growing up. My dad was a, uh, Yeah. As I say, an alpha male, he was a leader.
He was strong. He was traditional, had a certain way of thinking about things. He was also a product of the depression and world war two, et cetera. You know, we, weren’t a wealthy family, but things and being secure and having a good job were very important to him. I guess I came to faith as a, as a high schooler.
And that was a challenge for him because he kind of thought all of a sudden that I was judgmental of him. Yeah. I didn’t think he was a Christian, whatever. And that just, that just drove him nuts and then decided to go into quote unquote ministry as opposed to going into business. He always thought I should have been a lawyer.
I should have been a businessman. I would have made a lot of money. I could have provided better for my family. I think that was almost for him. He took it personal. Like I raised you a certain way. You know, he actually paid for me, this was a big deal. All of my. Friends family. My older sister all went to the university of Maryland public school.
Back in those days, probably cost 3000 bucks a year. I went to a private school down in North Carolina and my dad was like, I paid for you to go to that really preppy. Private school. And now you’re going into ministry and you’re earning $15,000 a year. I don’t get it. So, I mean, there was, there is places where we really struggled and yet today my dad’s 86, he’s calmed down and slowed down quite a bit.
And, uh, we’re best friends. I mean, in a lot of ways,
David Hirsch: Well, thank you for being authentic. Um, it sounds like, uh, it was challenging when you were a teenager and maybe into your twenties, you are getting into your career. You know, it’s a blessing. If your parents are still, you know, in their eighties, like your parents and, uh, that the relationship is improved and the way that you just described, I’m wondering if there’s any.
Advice or important lessons that come to mind when you think about your dad?
John Wagner: Oh yeah. My dad was a man of integrity, you know, he’s honest. He worked hard. Like you say, he was a, you know, he showed up every day. I don’t think he ever missed a day at work rain or shine. Feel good, feel bad. My dad showed up every day, worked hard.
He loved my mom. He and my mom had been married for 60. Some odd years and people would talk about our family all the time, time, you know, just because of the way my dad is a, he, as hard as he worked, the fact that he, you know, he took his whatever two weeks of vacation a year, but he really did try as hard as he could to be with us as kids and to love us.
And it was hard. It was a phone company guy. His division was the two fastest growing counties in America at the time, PJ and Montgomery County around DC. And they were wiring homes and adding phone lines by the thousands. And my, that was my dad’s job. And so he. You know, did everything he could to help and be with and love us kids.
And it was a lot of fun. I mean, you know, when we went, when we were go down to their little beach cottage, if you will, down at Chesapeake Bay, we just had a blast. I mean, I think of some of the funnest things I’ve ever, you know, as a, as a kid, I mean, you’re on the water, in the water skiing, boating, fishing, all, you know, all day long.
And so, and my dad was a big part of that.
David Hirsch: That’s excellent. Well, thank you for sharing. So my recollection was that you went to wake forest, you took a psychology degree, and then you went out to Pasadena and you were at the fuller theological seminary. What was the transition between college and the seminary?
John Wagner: Well, actually when I graduated from wake forest, I came back to DC and went on young life staff, 1982. And young life had a program with fuller seminary through which you could get a master’s degree. Okay. So we made it, we didn’t actually live in Pasadena. We just went like. During the summer, we’d take a class or two, but anyway, I mean, just to let you know about cramming four years into seven, I crammed three years in almost 20.
I didn’t graduate. I did get an endive and I finally got ordained in the Presbyterian church, but it took me almost 20. It did take me 20 years. I graduated in 1999. I started in 82. So what’s that 17 years. And then I got ordained in like 2001. I was not on the fast track.
David Hirsch: Thanks for sharing. It sounds like you met a lot more people by doing it that way than you would have if you crammed it all into a
John Wagner: Oh yeah.
Yeah. Most of the professors are started with ed retired. By the time I finished.
David Hirsch: Well, let’s get into it. Um, we’re going to talk about the role of the special needs initially on a personal level, uh, your family, and then beyond. So what was it like when you first learned of the situation? My recollection was, it was like shortly after. He was born and it’s not lost on me that you already had two kids, a boy and a girl before David was born.
So I know that that creates a different dynamic, right. Because you know what to expect. Right. You’ve been there and done that.
John Wagner: Oh, in terms of like the actual finding out or the event of his birth, as you know, having your third child is not like having your first. I mean at that point, you kind of feel like we’ve been through this.
We know what the drill is. You go to the hospital your way around a long time, you see a bunch of nurses and then you have your baby and you come home. My parents had come to our house to watch the older two. You got an R 1987 Honda civic drove to the hospital. I was pretty relaxed. Gay was doing pretty good.
I wasn’t in any pain. We went up to the room, chatting with, with the nurses, laughing, talking. I think we got something to eat out at a blah K goes into labor. She has the baby, and pretty quickly after that things kind of spring into motion, this is where things were different than the first two. So they started examining him then.
A neonatologist comes in, then they take David out of the room for a few minutes. Then the guy comes back in without the baby and they sit us down. And this is where, yeah, it felt like a car wreck. I mean, I get. Can get emotional now thinking about it. So it’s been 21 years and, uh, when those words, I think your son as down syndrome came out of that man’s mouth.
I, I thought he was kidding. I thought this is kind of some kind of cool joke. I was like, God, wouldn’t do this to us. There’s no way God thinks that we can handle this. I have no idea what you’re talking about. When you say that down syndrome, there’s no way our kid would have a problem or something like that.
I was in total denial and I mean, it literally felt like, you know, the idea of a birth had become a death. I mean, our crowning moment, a victory had become a crushing defeat. And for us, and for me, at least at that point, I thought this is not like for today or for tomorrow or for next week. This is for the rest of our lives.
We will suffer with this for the rest of our lives, for how long it takes him to talk, how long it takes him to walk schools, special needs, trust, finance, everything will now change. It just felt like our world completely crashed. And then I remember, you know, how you, I mean, this is before Facebook and all that stuff.
So you don’t post anything, but you call people and you tell them, Oh, we had a little boy and of course my parents are waiting. Her parents are waiting. My sister and my brother, her brother, all of them are waiting. We call them no one, I mean, for 24 hours, we just sat there and held each other. And again, I think we were just in shock, shock.
You know, the other thing that happens, I don’t know if you’ve been through this David, but they parade in this group of like social workers. And I mean, this is not the time for this right. Telling you all the different services and you can have him in this and that program. And have you heard of this?
And I’m like, what? Ma’am, I’m sorry, I’m just not, we not there. And so that first 24 hours was, uh, was a hell.
David Hirsch: Well, if I can paraphrase what you’ve said, it sounds like you got blindsided, right? Didn’t see it coming. Weren’t prepared at all. And it was overwhelming. You know, the natural reaction is just to sort of, you know, sort of close together.
Right? That’s what I heard you say is that you weren’t comfortable listening or hearing anything. You didn’t even feel comfortable talking to your family members. And that was a real shocker, you know, everybody deals with adversity or. Unanticipated news in a different way. And what I appreciate about the story that you’ve just relayed is that, you know, you’re not candy coating, what that experience was about.
You’re just telling it like it is. And the authenticity is at a very high level. And I think that’s what we’re trying to achieve with the special fathers network is that guys have to hear from one another. What the experience is about and put it in perspective. Um, it’s devastating, right? The dreams you had, the ones you weren’t even thinking about, you know, it’s like, uh, somebody has just pulled the rug out from under you and you know, you don’t know where you’re at or how you’re going to make it, but.
You know, you have to keep moving forward. So I’m wondering if there was any meaningful advice that you got, you can reflect on that first couple of days, that first couple of weeks, the first couple of months, but helped you make that transition.
John Wagner: It didn’t happen really in the hospital. And I got to say, the hospitals are amazing and people that work there are amazing.
And, uh, I’ve got lots of other stories about. Angels in hospitals, but it really didn’t happen so much there. I think our greater community of our church, some of our young life friends, et cetera, I mean, one guy said to me, he will be an angel. He’ll be an angel unaware. You will expect. I mean, this was the prophetic word in my life.
You will experience God in a totally different way because of David. I could not see that. I would not see that. But you will experience God in a totally different way because you have this son, he is a gift to you. Okay. I couldn’t hear that. All I could think was, you know, in a selfish way, I think for dads, this is probably a harder, I think gay, my wife, she moved on pretty quickly too.
I’m his mom. Well, let me tell you what she did say in the hospital. We literally like. The first words out of her mouth, when we found out was I will raise this kid. I will love this kid. I will be this kid’s mom. And I’ll never be happy again.
David Hirsch: Oh my
John Wagner: no. I mean, she really felt like her life was over. She felt like I would just serve and I will love him.
I’ll do my best, but my life is over. I mean, when we look back on that, it’s like, It couldn’t have been further from the truth. Gay would say that boy has been my light, my life, my joy, the greatest gift. God never gave us absolutely hundred percent. And she’s not taking anything away from either of our other two kids, but I’m telling you if you, if you made her choose.
She didn’t take in David over any of us, including the dog, which is hard. Like she totally, totally, totally loved that boy. And that boy loves her. And, um, I don’t know if we’re talking about the book at this point, but there’s a great picture of her and him sitting on the back of a boat and him in her arms, that picture.
Pretty much sums up their relationship. He just loved her and she loved him. So lots of people told us these things like this is going to be amazing for you. He is a gift he’s going to teach you things that you can’t learn any other way. He’s got, you know, and I just couldn’t hear it at that point. It took me, I dunno, probably a better part of a year or more before I could start hearing some of that stuff.
David Hirsch: Well, thank you for sharing. It’s a pretty powerful, cool story. Um, what you were just sharing about Gay’s comment about, um, I’m his mom raised him, but I was sad. She was at that point in your lives, you know, it’s like a grieving process, like a death, almost a life you anticipated is pushed aside or. Goes away and there’s this vacuum or this void and the fear that no doubt accompanies that you know is very, uh, challenging.
You know, it sounds like it took a while, not just days or weeks, but it took a while to. Get your footing. Maybe it took you longer than gay in the situation, but, uh, you know, somehow figured it out. So I’m wondering, were there some important decisions you made as parents early on that first year, that first few years that helped you work through that situation?
John Wagner: You know, our community of people. I don’t know how you do this apart from. The body of Christ. I just don’t, but people didn’t really understand necessarily special needs, but they did understand having people, they didn’t understand being dads and being moms, you know, Pam Harmon, people like that in our life, Mark and Pam, the dynamics, the Rhine holds, I mean, I could go on and on.
They just loved us. Our church. No. We were at national Presbyterian at the time. And Craig Barnes was the senior pastor, Jeff McCorey, junior McGarry, Han. I mean, these people were loving us, loving us as well, family. We had close friends in DC that were just with us, you know, and whatever we needed, I guess we made some decisions, you know, I mean, things do change.
Let’s just say things change. And they have to change, you know, maybe for us, one of the gifts was gay, was able to be home for the most part. And that was a big thing because I mean, as I’ve realized in the last year and a half, It’s like a full time job. I mean, there’s so many decisions that have to be made.
There’s so many appointments. There’s so many forms that have to be filled out. There’s so many different things. I mean, we live in a very legal society, et cetera. I mean, you just had to be on the board or you’re going to miss stuff. And gay was gay, was on it from day one. You know, we ended up moving.
That was the other thing we lived in the city. We tried and tried and tried and try. We called and called and called and called. And nobody called us back and nobody came and nobody showed up. And then one of our neighbors had a special needs child and they said, you’re probably going to have to Sue the city to get the services that you need.
And as soon as they said that we moved and we moved out to Montgomery County into a very nice neighborhood. And the second day somebody knocked on our door and said, how can we help? Wow. So it does matter, you know, I moved to New York was a, it was, that was a challenging, very challenging. That was eight years ago.
David was 13, but we had, at that point, he was one, we had to make a move to get to a place where we knew we could get services and we wouldn’t have to. Fight for them all the time. And we wouldn’t have to Sue people and whatever have lawyers and yeah, it just made a huge difference. So was
David Hirsch: the move from DC to New York to be in a better situation for David’s behalf?
Or was it something bigger there?
John Wagner: No, that was really a calling that I felt that, you know, so at that point that’s a. 2011 Jessie, my daughter had graduated from high school gay, and I really did miss the city. And I think we thought at some point we would love to move back. And it so happened that I lost the regional director in New York about that same time.
And I was looking for the person to replace him. And I was literally at a conference out in Colorado and a guy’s preaching on acts two and the whole world coming to Jerusalem at Pentecost. And I felt like God literally lifting me off the chair saying that’s New York. It is the whole world. You get a chance to preach to the entire world in a city like New York, stop looking for somebody else.
You’re the person.
David Hirsch: Wow.
John Wagner: And I called him yeah. On the phone. And I said, I think God wants us to move to New York. And she said, well, who are you sitting next to? I said, why? She said, because you might’ve heard overheard God speaking to somebody else. She was not exactly in favor. Who are you sitting next to?
David Hirsch: Oh my God.
John Wagner: So she’s from Texas, right. And, uh, you know, DC was a stretch, but New York, I mean, that’s the wrong direction, you know? So that move, what was that? Eight years ago? That was very challenging because David was like middle school. Age. And, uh, I could go on for days about how hard it was to get a school for him and how challenging all that was.
I mean, he’s in a great spot now, but it took us two years probably to get him there.
David Hirsch: Wow. Well, thank you again for being as transparent and authentic about that situation. I, I can only imagine, um, moving your family. You had it, wasn’t so hard for Jessie if she was just graduating from high school, but for the rest of the family.
And most perhaps importantly, your son and your spouse, right? I mean, Holy cow, that a leap of faith and a lot of different regards. So I’m sort of curious to know what a impact David’s had on his siblings, as well as the extended family.
John Wagner: Jesse would say he’s her best friend, for sure. I don’t know. It was probably not a great reference.
Have you seen that movie? What about Mary? She’s got a brother with disabilities and on like the first five dates that she goes out with this guy, her brother’s in the back seat and he’s like, yeah, I’m waiting for an ice cream. Let’s stop. You know, that would be David. Yeah. Then Jesse, I was engaged and all like that.
But Ryan, her fiance is very, very clear where he stands. It’s Jesse and David and then Ryan. Yeah, so she is very, I mean, uh, loves that boy to death. They spent a lot of time together. They were inseparable growing up. You know, Jessie came through some tough times as a teenager and David was her security blanket.
Her just the one that would love her, hugged her whole with her. Laugh with her. They have jokes and jokes on and on it together. They watch Disney movies together. I mean, they’re, they’re just, they’re in sacral.
David Hirsch: I’m sorry. Curious to know if, uh, when she was a teenager and going through high school and college and she was dating.
If David was sort of like a litmus test, how do these guys react?
John Wagner: Totally. Totally. If you didn’t make it with David you’re out and some of them first date they showed up, David was there. They didn’t do well. They’re out. And Ryan has a brother with disabilities. So that made it easier for him to be pretty sensitive.
And, you know, quick to the draw with David. Yeah. So Jesse and David, very close. Uh, Michael, my oldest actually really different. Michael was fairly insecure as a, certainly as a teenager, but even early on, he was pretty insecure. And I think he was somewhat embarrassed by David. So I honestly couldn’t tell you one time that he brought friends to our house because I really don’t think that he wanted them to meet David.
I mean, I don’t think he actually said that out loud, but. He would always go out and always go over someone else’s house. And yeah, I think as close as Jesse and David were Michael and David were not. So that was a harder relationship.
David Hirsch: Has that changed or improved over the years now?
John Wagner: Yeah. Yeah. Michael, Michael and David much closer now.
He misses him actually went my Michael’s now in LA and, uh, you know, a lot of times they’ll FaceTime and want to talk to David and two of them we’ll chat on the phone, but it’s taken a long time and probably Michael moving out of the house has helped honestly. Now let me also say, I think David has had, I think my parents would say out of all their grants, I think they have nine or 10 grandchildren.
David has easily made the biggest impact on our family. Oh, well, easily. I mean, I think of, uh, yeah, my parents, I think of Gay’s parents. I think of our siblings. I mean, nobody in our family had any experience with special needs before David and I think probably, you know, I mean, and I get into this, we can talk a little bit about.
My family was one of those, even if we’re not, we’re going to look good, even if we’re not good, we’re going to all show up. Look great, big smiles. Everything’s fine. Me and my mom, she came to a hospital and saw David. I mean, it was only like three days old at that point. She said he looks great. He’s fine. I don’t think anything’s wrong with him.
So the idea of something that is. You know, and disability that’s forever. That’s permanent. That is profoundly going to impact a family that was not in my, certainly not in my parents or in either one of our families repertoire. So David had, has just blown that whole paradigm up, maybe belong that up and just said, you know, it, ain’t perfect.
And it’s messy and it’s crazy. And you gotta bring a lot more equipment with you when you go somewhere. And sometimes, um, I don’t know, David throws up on the airplane or, you know, speaks out in a crowded room and appropriately, or does something, I mean, but that’s just life with David and, uh, Now we’ve gotten so much more relaxed and so much more.
Okay. Yeah. Then perfect. And sometimes it’s even worse, but we’re great. And that’s okay. And my parents, I think have, I mean, my dad, especially, you know, this whole idea of being an achiever, a go getter, get it done. Kind of guy. That’s not David. You know, and David still reads on a first grade level. And I think all that stuff has been huge.
David Hirsch: Yeah. Well, thanks for sharing. Um, it sounds like everybody has had a little bit different experience, right? You as parents, uh, your older siblings, like you’ve described and the impact of your parents, uh, has been profound as well. And, uh, you know, it’s. God, I think working on our hearts in different ways.
I’m wondering, um, were there some supporting organizations that you relied on your family’s relied on to help David reach his full potential?
John Wagner: Well, absolutely. I will say I don’t want this to be a soap box, uh, and it’s not, it’s not at all. The church is pretty ill-equipped quite frankly, to deal with it.
People like David and we’ve been in two or three churches since they was born. And they’re all equally in that if you will. And I don’t point fingers at anybody. I am. I’m a, I’m an ordained Presbyterian minister. I’m currently serving in a Piskel church in New York. I’m very involved and very invested.
I’m just saying my experience. People don’t know what to do. And there are usually a lot of kids like David, because most parents after about, I don’t know, six weeks of trying or maybe 10 weeks they give up and they don’t go to church by and large. So you don’t have a lot of other parents. So you’re kind of joining forces with, unless you go to some mega church, maybe somewhere.
In the South or something and they’ve got a program, but that’s, that’s unusual. So as much as our church really loved us and helped us and walked with a certain people, our church in general did not know that. And it, it made it very difficult for us even to want to. I know, and I’m a, I was on staff at this church part time and we started, we still struggle with going, I want to say later on.
There was two or three organizations that I can point to one young life’s Capernaum. So Pam Harman became our Capernaum leader in Washington, DC. That’s young lives, special needs program to kids with special needs, teenagers who special needs. And David got involved in that. We had a young life Capernaum in our neighborhood or in our area.
And he loved it and, uh, went to camp with them a few times. I mean, the first time that we put him on a bus to go to camp, we’re scared out of our minds. I’d worked for young life and I’m still scared. Well, he had never spent a night away from home and he was 15 years old and never been there in a way, you know, from us for probably more than a couple hours.
And that’s, that’s true for a lot of special needs parents, you know, they’ve never been separated from their kid. Like golly, he loved it and went every year after he loved it. I’m telling you David, every second of it, he just loved. And he loved being with these kids and he loved camp and he loved, I mean, he’d been with us to camp because that’s part of my job, but he’d never been at a camper by himself without his parents and staying in a dorm and hour in the cabin.
He just loved it. So we did that when I moved, when we moved, I moved to New York, the cook school. I could go on and on about how long it took us to get him into the cook school here in New York. But that place basically saved our life. I mean, they were amazing and he was there for six years. So his last four years, a high school, basically.
And then these last two years in the program, they call skills and cook was, um, it was all special needs kids. David was probably one of the lower end. Of that spectrum, but he loved every second of it. So anyway, cook Capernaum, and then the last, last one is camp that he’s at right now. He’s at a place called camp Lee Mar up in the Catskills in Pennsylvania.
And it’s a seven week camp. About three years ago. Gay said, you know, all these parents keep talking about this camp and how much. Fun their kids have and how amazing it is. And, you know, summers are kind of challenging for parents with special needs and you know, your kid’s not on the swim team and your kid is not whatever, you know, in baseball or going to the camper that or whatever.
But this place hundred kids who have special needs, they do it every summer. They’ve been doing it for 60 years. They know what they’re doing. It’s too long, almost two months. Of camp. And when we signed David up, Gabe was like, I don’t know if I can do this. I mean, he’s going to be gone for seven weeks. I said, honey, this could be, it can be great.
You know, if he likes it, he loved it. He loved it. So this is his third summer there. He learns a ton he’s swims every day, they play soccer, baseball, basketball, tennis. He does horseback riding. They’re going to a water park. I mean, he just, he just loves it.
David Hirsch: Well, I have to look into Camp Lamar and Pennsylvania is what I think you said
John Wagner: camp Lee Mar.
David Hirsch: .Okay. Thank you. Was special Olympics involved at all? Did he ever participate in special Olympics?
John Wagner: A little bit when we were in DC, particularly in Bethesda. Actually that’s where the Shriver family was that founded special Olympics. So he got to be in the back of unit Shriver’s house in the, in the pool with, uh, Arnold and you know, a few of our relatives.
Uh, there’s a picture of him with Arnold in the, yeah. But anyway, uh, he did that. He did basketball. I think he did swimming. So, yeah. Yeah, he did a little bit of special Olympics when we moved to New York. Unfortunately their hands, there’s not a lot of special Olympics here in the city as Juju has Playhouse there in New York city.
David Hirsch: Do you know?
John Wagner: Yes. And he didn’t do that. That’s great. He did a two different programs there where he was in like a play or a musical kind of thing that they did. David. He loves performing. Okay. He loves me up front. He’s very, uh, confident and very, um, he’s a showboater a little bit. And so anyway, he loved that.
He’s, he’s obsessed with cats, the musical he’s obsessed with cats, the musical to the point that he actually got a letter from Andrew Lloyd Webber. And I’m not kidding with a tee shirt. Of cats. I don’t know who, what somebody said. Andrew Lloyd Webber, a video of David dancing to one of the cats songs. And Andrew Logan, when we were so taken with it and he sent David the letter and just said, thanks for loving them the show.
David Hirsch: Wow. That’s amazing.
John Wagner: Yeah.
David Hirsch: well, let’s switch from talking about your personal experience and thank you again for sharing. To talking about young life and Capernaum in particular. And then, um, as time allows to delve a little bit into your book as well. So, um, first of all, let’s start with young life. What is it? Who does it serve?
How does it work?
John Wagner: Well, it’s, um, we’re an outreach to teenagers, so kids 13, 12, even up to 22 now a hundred different countries around the world. Every 50 States and every state, uh, we started in the forties in, uh, Texas, Gainesville, Texas, and basically a Presbyterian minister or a guest of like a seminary student.
The minister said, Hey, we’ve got these kids here in the church. We’re doing fine with, but there’s a whole bunch of kids over there in that high school that never. Show up at a church. I want you to go focus on them. And so Jim Rayburn started hanging out with teenagers and basically, you know, on their turf getting to know them, building relationships, loving them.
Didn’t really think he was starting an organization, but that’s what it turned into. And, and so we pride ourselves on being relationship. You know, with kids, we pride ourselves on going where they are building relationships on their turf, listening, earning the right to be heard. And then sharing the gospel.
So I mentioned that that was a huge turning point in my life. 1975. I went to Saranac Lake up in upstate New York and changed my life forever. We do a lot with camping, so we do take kids away to camp every summer. Now it’s probably 80,000 kids in the us, probably another close to 80,000 and internationally.
And, you know, we started as a suburban white honestly organization that was working primarily with upper middle class and middle class white kids in suburbia and in the sixties here in New York, Chicago, LA young, I started reaching out to city kids, urban city kids. So we just finished a basketball camp here up in Erie, Pennsylvania that had 250.
Black inner city boys in it. You know, we were in camps all over the country now for what we call young lives, which is our teen mom program. Uh, if you go internationally, we’ve got programs in Spanish and Russian in, uh, I. Was a couple months ago in Hong Kong where we have a programs in Cantonese. So yeah, it’s, it’s obviously, uh, we’re no longer just a white, super, uh, community kind of ministry.
Now what, 30 years ago more a guy named Nick Palermo. Was, uh, in one of these high schools, realizing that all these kids in wheelchairs and special needs are sitting in a different part of the lunch room, they’re sitting off to themselves, lots of people aren’t paying attention to them. He started going over and talking to him and just gotten to know these kids with special needs.
And one thing led to another and he said, Hey, why can’t we bring these kids to camp along with our other kids? And so they did and young life quickly realized we’re not set up for this. We don’t have ramps. We don’t have ways of getting these kids in and out of the dining hall. We don’t have ways of putting these kids on the ropes course.
We don’t have, so things began to change because Nick was bringing his special needs kids and he got some special needs bands and he. You know, that were wheelchair accessible, et cetera. And he started bringing these kids to camp. And so things started changing. So like in most big organizations, especially organizations like young life.
There was pushback. There was like, Hey, maybe this is not, you know exactly what young life is set up for. Maybe this is another organization. Maybe you should spin this off and do something different. Maybe somebody else should take this on. Nick just hung in there and said, you know, young life is going to embrace this eventually.
Well, I don’t know exactly now. I think we’re in probably a little over 250 communities in the U S probably 13 or 14 countries around the world. They’re working with about 25,000 kids with special needs. They’ve just teamed up with Tim Tebow and the night to shine. We’re doing amazing. Amazing. Uh, Johnny and friends has been very involved with life Capernaum.
I think Johnny was actually on the board for awhile. It’s one of the most impactful ministries in young life. And, uh, Pam Harmon, good friend I mentioned earlier, uh, is the vice president of Capernaum. She leads the whole thing. So I don’t know, maybe 150 200 staff that are just working with kids with special needs around the country.
David Hirsch: Okay. Well, you didn’t mention this, but I’m thinking about it from. Not the campers perspective, but the parent’s perspective, this has gotta be invaluable for your respite, Stan.
John Wagner: Oh, I mean, gay and I were in yet or in young life for 30 years, we know a little bit about camp and all like this, and we know about club and all that stuff.
Right. When we would, we’ve been doing this for a while, but when we put our kid on the bus, we were like, this is amazing. Well, we had met, I mean, we went out to dinner for like five hours, you know, we hadn’t been out to dinner for more than 40 minutes. I mean, to have five or six days was just the two of you.
It was phenomenal. Yeah. And you know, it breeds a little bit of a community between the parents as well, because you get to know the parents that are in, you know, their kid is in the same program as your kid. I mean, in. And so we’ve gotten to be friends with a lot of people that we probably wouldn’t have otherwise just through the Capernaum network.
So it’s a real gift to parents.
David Hirsch: Yeah, well, it sounds like a win, win, win situation. Um, it’s obviously having a positive impact on those individuals with the special needs. Uh, you’re impacting the other campers. Are there groups are mixed or they’re getting together so that there’s a lot of learning going on.
You know, it’s a sense of relief, a respite for the parents. So it’s something that, you know, everybody looks forward to. For different reasons, and it’s amazing how it’s grown and how you’ve been able to perpetuate my hats off to you guys at young life and in particular at Capernaum. So just talk about the book briefly, the title of which is perfect sacred stories from the heart of a dad.
The book came out in 2015. Um, I’m sort of curious to know what was the inspiration for writing a book? I mean, it takes time. There’s a lot of energy. How did that come about?
John Wagner: I had a good friend that one said, you know, the only thing standing between you and writing a book is sleep deprivation. So if you don’t mind getting up at like four 30 or five o’clock in the morning and write in for an hour, you can do it.
Anybody can do it. You just got to discipline yourself to doing it and doing it every day. So I never really set out to write a book. I was basically journaling. And, you know, I was processing a lot of, I mean, the way I process obviously talking, but also just writing. And I do a lot of processing just in journaling and writing.
And so I was writing a lot of the things that God was teaching me through David. And, you know, obviously this was a little later on in life and in his life. So. I don’t know when this process started, maybe he was 12 or 13, and I just started writing things down that I was learning and different scriptures that would come to mind.
There’ve been things that people had said and, you know, different things that I would notice about myself because of him and. Yeah. At some point, I remember reading one of these things too gay, and she said, you need to be able to share that with other people. There’s lots of people that probably need to hear that.
And, uh, I don’t know, one thing kind of led to another and then, uh, I’ve a good friend. Who’s a publisher. And he said, have you ever thought about putting it into a book and I’ve caught on, on no, I’ve never really thought of that. And he said, well, I think you could. And I think it would be amazing. And so.
It was good. It was hard. I mean, you know, you might only be, cause you have something to say and you’re right, because God’s given you something that you feel like you want to share, and this is one way to do it.
David Hirsch: Yeah, well, I loved it. Thank you for sharing. Um, I like the format. There’s 30 chapters. There’s reference to scripture in equal protectors.
You’ve got questions in the back of each of the chapters so that, you know, somebody can read, reflect on this and just put it in perspective. It’s not meant to be like a, read it as fast as you can, all the way through, you know, it’s meant to be sort of like a journal, almost like you were saying, you know, you really reflected on a lot of different.
Uh, situations and, uh, I think it’s really well laid out. Uh, one of the things that really struck me was, and I’m going to quote this, um, from the introduction, uh, you wrote as David grew older, I realized that God was shaping me and teaching me in ways I had never experienced before hardly a day would go by.
I wouldn’t learn something about me about life, about God and Jesus through David. Things about joy and peace and rhythm and courage and celebration and gratitude and suffering and surrender and what it means to be cherished and loved. That was a very profound here from the beginning of the book. And I’m wondering if there was a favorite chapter or two.
That you’d want to drill down on and I can tell you what my favorites were, but I’m sort of curious to know from your perspective, what that was all about.
John Wagner: Yeah. I would say a couple, you know, one is beloved. I’ve talked a little bit about my dad. I think in general, when we start talking about dads, I think they get a lot of strokes, especially through their sons.
I mean, how much do you sit there and you listen to dads, talk about, you know, my guy. He had two home runs and our last game, he crushed it. It was amazing. You know, my dad, my, my son’s going to USC. He’s, he’s incredible. My son just got into UVA. He’s amazing. You know what I mean? We all brag. Right. And we all want to be, you know, I mean, we, we measure each other through our sons and uh, okay.
Now I have a kid who can’t read or write, you know, and he’s 15. No, I never played sports. She still watches Barney in France. I’m going to, how about that? You wanna share that with your buddies, you know, at the cocktail party or whatever. I mean, so now I got that. So one of the chapters for me is this idea of being beloved and, um, it’s not about achieving.
And I think I grew up. Being an achiever. My dad was an achiever. I was taught that. That’s how you got attention. That’s how you were loved is that you performed and David can’t perform. And so what I learned, you know, that, that, that Luke three verse where before Jesus has done one thing. It’s, you know, basically it’s at his baptism, John, the Baptist God speaks and said, this is my son in whom I am well pleased in whom I love.
And I go, how in the world, why was it that he was well pleased with this son who hasn’t done? One thing. He hasn’t done a thing, walked on water. He hasn’t performed any miracles. He hadn’t changed water into wine. He hasn’t preached any sermons. He hadn’t done a thing. Why is he so well-pleased he is well pleased just cause he loves him.
He just because of who he is just because he is just cause he is his son. And I think that’s what David is. So I mean, that’s probably the biggest lesson is you are loved just because you are. Not because of what you’ve done, not because of how you perform, not because of what you, the grades you make or the job you got or the house you live in, or the car you drive or the amount of money you make, or any of that.
David can’t do any of those. But I think I say in the book, you also can’t get that boy off the dance floor. He knows he’s loved. He knows when he wallows in it, he knows that he is loved just because he is. And I never knew that. I always thought I was loved because of what I did. And how I could perform and I could earn it.
And I could show that I worthy of it. David is only worthy of it because he is. And that, to me, that was mind blowing. He lives in a place of being loved. Like, no one I know. And because of that, he can love. He, he doesn’t need you necessarily. He wants you to love him back, but he, he is, he is the first to hug.
He is the first to slap by five is the first to put his arm around you. That’s why it’s so attractive. So, so for me that was, that was probably the absolute biggest, biggest lesson. The other, the other one was the authenticity, which you you’ve said a couple of times, but I mean, I think what. What I learned growing up was, you know, fake it till you make it put on a good face.
Always act like, you know, things are great. Make a good impression, make a good impression, no matter how you’re feeling. And David doesn’t have any of those filters and David doesn’t have even the ability to fake it. And so what you see is what you get with him. I mean, if he’s mad, he’s mad. If he’s upset, he’s upset.
If he is having a bad day, he’s having a bad day, but he is authentic to a fault, you know? And I think for so many of us, we hide, we put things in the trunk and hope that nobody knows, and nobody finds out and we’re, we’re leading very false lodge. I mean, to be honest, And the tension that, that anxiety, that, that creates is crazy.
So rather than do that, I think what I’ve learned is you just live an authentic life and you are who you are. And if you’re, if you’re hurting, you say you’re hurting and if you’re happy, you’re happy. And that’s just who David is and he can’t be any other way. So that, to me, those two things have been, man, I could go on and on, like I said, there’s 30 chapters, but I mean, I think those two things have been markers for me and, and life-changing kind of, yeah.
David Hirsch: thanks for sharing. Um, those two chapters in particular were some of my favorite as well. And, uh, there’s a lot there right. More than meets the eye. And I’m hoping that our listeners will take a look either the Kindle version or buy a new buy. It used on Amazon type of deal. I’m wondering, I’m thinking about advice now.
Um, if there’s something that you can share. With parents, specifically dads who are raising a child with special needs. If you just had to say one or two things.
John Wagner: Well, I would say, Hey, don’t do this alone because this is not a journey that was meant to be walked alone. Have people close to you, especially other guys.
I think of my friend, Keith Callan here, who I run with from the part most days. And Amanda, just think of another brother that you can journey with. And then the other thing I’d just say is be honest and be honest with your, you know, supplements. I mean, I don’t know if I said this earlier, but one, one person said to me, having a child with special needs is as a permanent grief, you know, you go through it early.
Then you go through it in the middle and then you go through it again later, and then you go through it again and again and again, and your kid doesn’t go to college. He’s not going to get married. He didn’t get a driver’s license. I mean, my kid, I’m talking about my kid now he’s not going to have any high powered job or do you know, whatever, those just aren’t things that, so you grieve in different ways.
And I think it’s just for dads. Oftentimes, we, again, we hold that stuff in. We don’t know what to do with it. It’s real. I mean, those things are painful. I just think there has to be places where dads can talk about that stuff and be honest and say, this is hard and yeah, because they’re gonna look, they’re gonna love their kids a lot easier and a lot better if they can do that.
And if they can process that stuff.
David Hirsch: Yeah. Well, I think one of the important points you just made is that the grieving isn’t something that just takes place at the beginning. Get over it, move on. You’re reminded, I think what you were saying is that there’s these milestones, whether their driver’s license or graduating from college or getting a job or whatever it is, right.
That, you know, you’re. A human being, right. We’re comparing ourselves to one another. We’re comparing our kids to other people’s kids and you’re being reminded directly or indirectly of those milestones that, you know, either are going to take a lot longer or might not ever happen. And, you know, we’re impacted by that.
And I’m hoping that just being authentic and open and sharing helps people put it all in perspective. So they’re not. Holding onto these unrealistic expectations any longer than necessary. So thanks for sharing. So I’m wondering, um, why is it that you’ve agreed to be a mentor? Father is part of the Special Fathers Network.
John Wagner: There’s a lot of bands out there like me. Absolutely. I wish. Yeah, those first few years. I mean, I could probably say a hundred different times, not even just those first few years, human, probably in the last six months. There’s something about having a kid with special needs that you understand each other and just automatically, right.
You share something that other people don’t share. You know, my wife had breast cancer. So when she would sit down with another woman who had breast cancer, That was a conversation that was different than any other conversation. That’s how it is. I think with dads that have kids with special needs or just, yeah, in general, but I mean, I think that is a fraternity, if you will, that is special.
So if I can help somebody or I don’t know if I’m mentor, you know, Worthy, but, uh, I can certainly share my experience and if that’s helpful, I’m happy to do it.
David Hirsch: Well, we’re thrilled to have you thank you for being part of the network. Let’s also give a special shout out to our mutual friend, Pam Harmon, with young life Capernaum for helping put up there.
John Wagner: Absolutely.
David Hirsch: Is there anything else you’d like to say before we wrap up?
John Wagner: No David, other than thank you very much. You’ve been amazing and it’s been a real privilege and I’m very grateful for, uh, The opportunity. So thank you.
David Hirsch: Welcome. So if somebody wants to get information on young life, on Capernaum to contact you, how would they go about doing that?
John Wagner: Oh, you go to younglife.org, easiest thing. You can go there. A Capernaum webpage there. I would think you could get a hold of Pam to that. Uh, you can always email me at jwagner, jWagner@scdotyounglife.org. JWagnerknowsc@younglife.org. And, um, yeah. When younglife.org.
David Hirsch: Excellent. John, thank you for taking the time and many insights.
As a reminder, John is just one of the dads. Who’s agreed to be a mentor father as part of the Special Fathers Network, a mentoring program for fathers raising children 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 21stcenturydads.org.
There are a host of ways that you can support the Special Fathers Network. You can post a review. On iTunes share this and other podcasts with friends as well as make a charitable donation. The 21st Century Dads Foundation. John. Thanks again.
John Wagner: Thank you, David. It’s been a privilege and thank you for listening to the dad to dad podcast presented by the Special Fathers Network.
Tom Couch: 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 connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers, go to 21stcenturydads.org.
David Hirsch: And if you’re a 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: If you enjoy this podcast, please be sure to like us on Facebook and subscribe on iTunes or wherever you listen.
The dad to dad podcast is produced by Couch Audio for the Special Fathers Network. Thanks for listening.