034 – Steve Bundy, father of an autistic child with Muscular Dystrophy, helps parents world wide.
Meet Steve Bundy, author and Vice President of Joni and Friends, providing assistance to families with special needs around the world. Steve is father of two children, Jaron and Caleb who is autistic and has a rare form of Muscular Dystrophy.
Dad to Dad 34 – Steve Bundy, father of an autistic child with Muscular Dystrophy, helps parents world wide.
Steve Bundy: He’s a bundle of blessing, but a bundle of challenge at the same time, I did not know what to do with all this emotion going on inside me, which is one of the reasons I am so excited for the Special Fathers Network.
Tom Couch: That’s Steve Bundy, father of two. Vice president of Johnny and friends and today’s guest on the dad to dad podcast presented by the Special Fathers Network.
And here’s our host, a man who spent decades advocating for fathers 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.
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 Steve,
David Hirsch: I’m thrilled to be talking today with my friend, Steve Bundy of semi Valley, California, a father of two vice president at Johnny and friends in Agoura Hills, California, and an author.
Steve, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Steve Bundy: Dave. Thanks for having me. I’m thrilled to be here.
David Hirsch: You and your wife, Melissa have been married for 26 years and other proud parents of two boys, Jaron who’s 15 and older brother, Caleb 19, who has autism and a rare form of muscular dystrophy.
And is nonverbal. Let’s start with some background. Where did you grow up? Tell me something about your family.
Steve Bundy: Yeah, absolutely. Well, I grew up in Oklahoma, just outside of Tulsa area. Most of my upbringing was out in the countryside. And then later my high school days, we grew up in to the sub our move to the suburbs of Tulsa.
And so that’s where I spent most of my upbringing up until my college days. So, uh, I am a, uh, an Okie, uh, in heart.
David Hirsch: Did you have any siblings growing up?
Steve Bundy: Uh, yes, I have one sibling. I have an older brother and it’s about three and a half years older than me.
David Hirsch: What’s his name? What does he do?
Steve Bundy: So that’s, uh, his name is Kevin, uh, and, uh, so Kevin, uh, lives still in Oklahoma and, uh, he lives with my mother.
Uh, actually my brother, I grew up with a brother. Uh, that has had, uh, his own battles with some mental illness and, uh, some other struggles in life. And so he, uh, continues to live with my mom. We have a, a good relationship, uh, in terms of communication and he helps care for her as she ages. And so we had a great, uh, you know, sibling brotherhood growing up.
David Hirsch: That’s wonderful. Thank you for sharing. So how would you describe the relationship with your dad?
Steve Bundy: Yeah, you know, well, my, my dad, uh, my dad passed away about 14 years ago. Uh, when I was about 33 years old or so 34 or something, I guess 34. Uh, he was pretty young. He was only 54 years old, but growing up, I had a great relationship with my dad in terms of my father, uh, kind of coming, you know, he’s cut from that cloth.
Yeah. He was a blue collar worker. He understood hard work. He was an entrepreneur and he taught me the value of, of hard work. So, uh, you know, he’s in that era where he did not display a lot of affection. Never really heard the words. I love you until much later in life. Looking back as I got older and saw how my dad would take me to work, how he would employ me as one of his first employees in the mini small companies that he started, uh, how he taught me those lessons and those values of, of hard work and.
Making a living for your family. Those were those life lessons that I have always kept with me. And so I had a good relationship with my father. It was not, as I said, it, wasn’t the kind where had a lot of affection or hurt. I love you those kinds of things. But looking back, I recognize how he invested in my life.
And I think deep in his heart, he really understood and knew that his job was to raise me to be. To be a man. It’s interesting because it was later in my dad’s life. When he was, he was actually diagnosed with COPD, a lung disease from smoking. He smoked since he was 12 years old, it was much later in his life.
Uh, after my son, Caleb was born that I saw this incredible transformation begin to happen in him. Uh, when he became a grandpa, he just soft and, uh, tremendously. And that’s when he, I really began to see the affection, uh, come out in him, uh, not just for my grandson, but for me as well. And so, uh, Caleb’s birth, uh, really brought about quite, uh, uh, a change in our own relationship between, uh, my father and me.
David Hirsch: Well, thanks for sharing. Sorry to hear that he passed away at such an early age. 54 seems super young as somebody who’s 57 today. I don’t know what it’s like to be a grandparent yet. We’re going to find out in March, but it is said to be a transformational experience. And I’m pleasantly surprised to learn that, uh, this not only was transformational for him because of becoming a grandfather, but for your relationship as well.
Steve Bundy: Yeah, it absolutely was an early congratulations to you for that coming grandchild. Well, thank you. It was, it was transformational in many ways. And so I have Caleb to think for that.
David Hirsch: So what advice. Did you receive or important lesson beyond this, um, hard work ethic, um, providing for your family? That’s the take away from your dad?
Steve Bundy: You know, my dad was a man who really did follow his dreams and, uh, that’s something that he imparted into me. He had a ups and downs in business life. He graduated with a high school diploma. He and my mom got married very young. My dad was 17, she was 16. And my brother came along shortly after that. So he hit the realities and the hardships of life pretty quick and at a pretty young age.
And so he always applied himself to what was right in front of him with an eye towards something bigger. And so I mentioned he started a number of businesses when I was growing up. So, um, he was quite the entrepreneur. So if one business would fail and you know, he’s not the kind of, it was not the kind of guy that would sit around and, and mourn his losses.
Uh, he would be up and about, and he’d be launching something new right away. And he did have some successes. He and his brother, my uncle, they started a manufacturing company for aftermarket products, for pickup trucks that, uh, had some success throughout the Midwest and throughout the South. And, uh, it was just so proud of him to watch him continue to lean into his dreams and to not give up.
And that’s something he passed on to me that I’ve kept with me.
David Hirsch: Um, I remember you telling me that your father in law who still alive at age 84, um, did have an influence over your life in what way?
Steve Bundy: Absolutely. So, yeah, my father-in-law Glenn Pearson, um, is, uh, really a strong man of faith and the influence he’s had in my life was that of stability.
I think. Uh, he’s a man of faith, a man of courage. He’s someone I could turn to, especially in the absence of my father, after my father passed away and bounce off him questions, especially as it relates to life choices in life decisions for our family. So Glen is, is a gentlemen that, uh, I turn to and ask him for prayer requests.
I ask him for wisdom and insight and certain things. And so he has really imparted, I would say in my life, an understanding of faith, a greater understanding of God, a greater understanding of the Bible of scripture, uh, and, uh, that has been invaluable to me. That’s
David Hirsch: fabulous. Let’s switch gears and talk a little bit about, uh, your education.
From what I remember, you went to Bethany global and Minnesota and Viola university, where you got your master’s degree and organizational leadership. When you were going to school graduating, what, what were you thinking you’re going to do? W where was your career pointing? You?
Steve Bundy: Yeah. Great question. So, you know, my journey really goes back to when I was 16 years old and that is, was a pivotal point in my life.
It’s when I made a personal confession of faith in Jesus Christ. And it was at that time, I really said that there was a bigger mission. And that part of my mission in expression of my love back to God was to be a missionary. And so, um, I began to pursue what that might look like. And I had some mentors in my life at that time.
Got some wonderful advice. I ended up at Bethany global university up in Minnesota, and, uh, that was preparation, studying theology, studying cross-cultural missions and anthropology and all the kinds of things to prepare you for a long term success, uh, in, in foreign missions. And so what was going through my mind was being, uh, and spending the majority of my life in a cross cultural setting, working among the different people groups and introducing them to the gospel of Jesus Christ.
Introducing them to the love of God, working in very practical ways with them. My wife and I have always had a heart for people, different ethnic groups around the world. In specifically, we were highly interested in, uh, in Asia. And so, uh, I had big plans and big thoughts and big ideas about how the world was going to look in our, my role in my wife’s role in the world.
David Hirsch: did you actually do some missionary work
Steve Bundy: or not? What we did? We did the in fact, uh, uh, I was married, uh, to, uh, met my bride in college. And so we were married before, uh, we both graduated. And so our first two anniversaries, uh, were spent, uh, overseas in a country called Slovenia. That’s an Eastern Europe at the time.
It was at the end of the Yugoslavia era. Or communism had fallen in 89. We were married in 92 and by 93, we were in Slovenia Eastern Europe. And it was a fabulous, you know, two, two years of marriage for us. We were, uh, working, uh, in universities with students. Uh, who were eager, eager to use their English, uh, at that time.
And then we worked a little bit in the, uh, refugee camps because of the, the Yugoslavia war was still happening. And so those were some very challenging circumstances and situations, and we were able to be. You know, some sort of a, of a light, we think in a blessing to these refugees in their circumstances.
So it was a wonderful, wonderful season of our lives.
David Hirsch: So, uh, from what I remember, you are a missionary, then you’d been a pastor before you went to Johnny and friends. Uh, where, where did you pastor and what type of experience was that?
Steve Bundy: Yeah, so I, you know, I’ve had, uh, Dave, some different roles in different churches.
I won’t go into all of those, but I’ve done some youth ministry I’ve done. Some evangelism type outreach, uh, roles, probably the primary before coming to Johnny and friends, uh, was at first church of the Nazarene in Pasadena, California. And, uh, I was, uh, serving in that particular church as a pastor. Over special needs ministries, the disability ministry, and, uh, that had really come out of the passion that my wife and I had with Caleb was in our lives at that time.
But we were struggling to go to church because we couldn’t find a church with any sort of special needs ministry. And so we ended up launching a ministry. In that church for families that had disabled children and God blessed it, it was a wonderful, wonderful, uh, season and ministry. And I thoroughly enjoyed being part of that, of that pastorate for a number of years there in Pasadena.
David Hirsch: Well, let’s talk about special needs on a personal level first and then beyond. So before Caleb’s diagnosis, did you or Melissa have any connections to the special needs community?
Steve Bundy: You know, I, I did. And, uh, it’s interesting how God often prepares us and we don’t know that until hindsight, but while we were overseas, someone sent me a book by Henry now, and this book was titled in the name of Jesus reflections on Christian leadership.
I love to study leadership. As you mentioned earlier, I have a master’s degree in organizational leadership. And so I, I took this book, I read it. And what, I didn’t know, when I first cracked open the cover, uh, is his reflections were based off his experience of working with adults with developmental disabilities.
No. I didn’t know that at the time until I started reading the book and he began to lay out basically, uh, his journey from the ivory towers of places like Harvard and Yale, where he was a professor of theology to becoming the chaplain, the priest of a community of basically broken people. And this journey took him to a place where.
God transformed him spiritually and emotionally. And the book was written out of this unfolding in his life. I read the book, I was just captivated with it and I didn’t know why, but I was, I read it about three times and it’s a simple book. It’s I mean, it’s not a long read. So when we returned from the States, I said to my wife, you know, I think I want to work with people who have disabilities.
And so I found a, uh, opportunity at a care facility. That was a hundred bed care facility for adults with developmental disabilities. I started there and I helped them launch a vocational program. And I immediately fell in love with the residents there and about a year and a half into it, I was asked if I would become the director, had a great relationship with the staff and the administrator.
And I was asked if I’d become the director. And that launched me into about another three and a half years of, of responsibilities and oversight of the organization. And it was me being steeped into working with almost every variety and aspect of disability, physical, you know, uh, cognitive and developmental, uh, at every, just about every stage as well.
So it really became kind of a, a, I think a big preparatory for my son to come along and for what I’m doing now.
David Hirsch: So was Caleb born by that time? Or he had not been born by that
Steve Bundy: time. So, so great question. So Caleb, uh, was born in my fifth year of serving there. And that’s a interesting story too, because of the difference of me, you know, professionally, uh, serving those with disabilities and then having a son born into my life.
And it was a pretty radical shift for me.
David Hirsch: I know that only because I’ve read your book. Um, so what is Caleb’s affliction? And what was your first reaction upon learning of Caleb’s diagnosis?
Steve Bundy: So Caleb is our first and we had a couple of miscarriages before Kayla was actually born. And so I was already a little bit emotionally raw just from having gone through these, these miscarriages.
And when Kayla was born, we didn’t know exactly what was going on at the time of his birth. But we knew that not everything was right. Uh, he came out with some asymmetries, you know, with his ears, told some things just didn’t quite line up. Right. He had a what’s called tongue displacement, or he couldn’t necessarily, uh, suck a nurse appropriately.
So we knew it was something was a little bit of mist. And, um, it wasn’t until about six months in with all these, uh, You know, pediatric appointments. And what we didn’t realize is that we were going to the pediatrician about once a week, or at least once every two weeks, very regularly and were new parents.
We didn’t realize that most. New parents. Aren’t taking their infants in every week. You know, it’s a, we’ll see in two or three months,
David Hirsch: well, you didn’t know any different though, right? Because you are a new parents. So this just seemed to be a reality.
Steve Bundy: That’s right. We didn’t know any difference. So we just thought, well, the dog, you know, we just got a great pediatrician and we did, and we did.
Uh, but I remember once he called us, we were home. Kayla was about six months old. And he said, ah, you know, guys, I think it’s time. We see a developmental specialist and we knew then he was confirming some of our fears, not everything was right. And what he’d been documenting all this time was Caleb’s head was not growing.
Right. He had a muscle lag. He wasn’t holding his head. He knew things weren’t developing properly for Caleb. And then we would, it would take a number of months for us to come to an understanding that he had a partial chromosome deletion out of chromosome number two. So it’s a partial deletion, which still didn’t tell us much.
I’ll tell you what we learned Dave, as you get to the edge of medicine pretty quick. Okay. Medicine can tell you so much, but there’s a lot. Medicine cannot tell you. So they knew Caleb had a partial chromosome deletion, but they couldn’t tell you. Uh, what the DNA, you know, what the genes on that chromosome deletion, w w you know, what was missing, nor could they tell you how that’s going to affect Caleb?
Okay. So, uh, we kinda continued to move forward with, uh, Caleb and it wasn’t until years later that we would get a formal diagnosis of a rare muscular dystrophy. But during that time, Kayla was also diagnosed with autism. Uh, he falls on the autism spectrum, pretty severe. Uh, he is nonverbal, he’s severely, intellectually disabled.
Uh, so cognitively he functions very low and, uh, all of that adds up to be a, I call a bundle of. He’s a bundle of blessing, but a bundle of challenge the same time and getting to your, the heart of your question. How did I handle that as a new father and one who was on a path for ministry, uh, with a theology that was very flawed.
I did not handle that very well. Um, you know, I, I did not leave my family physically. I continued to provide for my family. I was there every day. I showed up, you know, I left for work in the morning. I came home at night, but emotionally I checked out emotionally, emotionally I left. And part of that because I did not know what to do.
With all this emotion going on inside me, which is one of the reasons I am so excited for the special father’s network. I’m just thrilled because I did not have a dad to come around me and to put his arm around my shoulder and to say, Hey, you know what, it’s going to be. All right. You’re surrounded with hope.
You’re surrounded with support, you know, God cares for your family. Uh, there’s a great bright future. Uh, didn’t see. Any of that, the moment I had tunnel vision. Of my very severely disabled child and all the plans that I had in the future for international travel international ministry just began to crumble in front of me.
And so that was a very, very challenging season of life, uh, for me and. And for my wife as well, because I wasn’t leading, you know, as she needed me to leave to lead, excuse me. And so, um, that was hard. Uh, it was a hard season of life for us hard season of marriage. And, uh, you know, it was through grace and Providence that God began to change my perspective.
Of Caleb in the blessing he was and is in our lives today.
David Hirsch: Well, thank you for sharing and being so authentic. Would it be appropriate to say that you experienced a crisis of faith?
Steve Bundy: It would be very appropriate to say that, uh, David and, um, you know, one of the things, uh, you, you, you, you mentioned, and you’ll probably mention, um, the book I coauthored in a little bit.
So I’ll mention a story out of there that I think is somewhat applicable for other dads. And that’s the reality that as men, we are prone, we are wired to fix things and when things can’t be fixed, we throw them away. You know, we really don’t have a place for them. And, uh, what I didn’t realize is that there was a big part of me as a young father that was kind of applying this same.
Uh, perspective on my son. I was trying to fix him. And the fact that he could not be fixed was causing incredible anger in me and unsettled ness. And it was very difficult for me to accept my son for me to embrace him for who he is. And so my son likes so many special needs kids. You know, he didn’t sleep very well at night, still doesn’t without medication, but, uh, but the early years we didn’t really know how to come alongside and support him with some medication to help him sleep at night.
So he would wake up at all hours of the night. It was during this time, this crisis of faith, where I really felt as if I was in kind of a spiritual darkness, I was in a wilderness. If you will try and kind of groping about figuring out, you know, where’s God in the midst of this. I mean, I have a God who loves me and cares for me and cares for my family.
Why we let this happen? I’ve dedicated my life to ministry. Now. I’m not a bad person, et cetera. And my appeal to God was would you, would you fix my son? Yeah. Would you heal my son? You know, you’re the God of the universe. Surely you could do this. And it was one of those nights where Kayla wasn’t sleeping very well.
It’s about 2:00 AM in the morning or so. He’s crying. He wa he would wake up crying sometimes and I’d go into his room and I would kind of rock him back and forth until he had fallen asleep again. And I did this again on this particular night and got him back to sleep and I put him in his bed and then I just, I lay there on his floor and I was staring up at the ceiling.
And my thoughts were very similar and tears began to roll down. My, my, uh, my cheeks is, um, next to my, my disabled son and all his brokenness. And I, I, I said again to God, you know, God, why won’t you fix my son? And now a lot of times that question I was asking Dave was, uh, with, with the fist, it was clipped, you know, why.
You know, why, why you’re, why aren’t you, why won’t you fix my son in this particular case? I think God had allowed me to come to a place where my fist wasn’t clinched quite as much. It was more a matter of, okay. Now know why won’t you. Fix my son. Why won’t you heal my son? Why, why can’t I come across a miracle of some sort or a drug or something?
And, um, in this particular case, I personally sensed, uh, the presence of God fill that room. And, um, for me personally, this is my, my personal story. I, I can’t speak for others, but I sense that God was there. And, uh, in a very clear tone, not audible, uh didn’t that didn’t have any audible experience or anything, but I sent a real clear instruction or words from God, brother that just simply said to me, Steve, my son, aren’t you glad that I did not require you to be fixed before I accepted you.
And as soon as those words pierced my heart, I recognized and realized that this God of the universe loved and accepted me with all my brokenness, all my own disability, if you will, almost my own lack and in my own, uh, despair. That he fully accepted me without me having to be fixed. Um, I didn’t have to clean up if you will.
I didn’t have to figure everything out. Didn’t have to figure out life before God poured out his love into my life, uh, through his son, Jesus Christ. And it was a milestone moment for me, a watershed moment, as I’ve often called it. We’re I had a new understanding, a new perspective that my son wasn’t the one that needed to be fixed.
I was the one that needed to be fixed. I was the broken one, um, and that God had fully accepted me and that he loved me for who I was. And so it was one of those pivotal moments that had a significant impact in my life. And, uh, This point, uh, I just realized this unconditional love of God that was poured out on me.
How could I hold that from my son? How could I withhold that from my son, Caleb? And so in that moment, I, I grabbed Caleb and, uh, it was even though he was asleep and he wouldn’t have understood the words anyways, they meant a lot to me. And they were life changing for me. And I grabbed him and I embraced him and I said, Caleb, you are my son.
And I am your father. And you do not need to be fixed for me to accept you. That’s
David Hirsch: very powerful. Thank you. Thank you so much for sharing.
Steve Bundy: Yeah.
David Hirsch: So what were some of the more important decisions that you and Melissa made raising two children, including one with special
Steve Bundy: You know, I, I think, um, Probably the most critical decision that we made.
And it’s, it’s a decision Dave that we have to continually make. And that is that no matter what God was going to be at the very center of our family. Now, the center of our marriage, the center of all the dysfunction we experienced sometimes with disability and, um, What I did learn very early on as I began to embrace my son’s needs.
As I began to lean into, uh, wanting to provide a home for him. Where he could become everything that he was going to become. As I began to look around, I realized that what often, you know, fragmented families, what often happened when family struggled in many times didn’t make it is because the, the child with the special needs, uh, became the very center of the home.
And that’s very natural. I understand that because my son’s needs are incredibly consuming. And at the same time, you know, one of the things I said to my wife, Was, you know, Melissa out of everything, we can give Kayla out of everything we can do for him, all the therapies, you know, all the education, all the, uh, respite care givers and caregivers and everything we can do for our son.
The most important thing we could possibly give him is a loving home. That is founded on and based upon, uh, God and scripture. And so that was a decision that we made very intentional through the ups and the downs the hard times. And we’ve not done a perfect, I’ll be the first to tell you, we have made our share of mistakes and continue to do so.
And, uh, we’re far, far from perfect too. Uh, but we have made a commitment that our son’s needs. Won’t be the center of our home. That God would be the center of our home, that we’re going to care for each family member. And we’re going to do what we need to do to care for our son with special needs. But at the same time, recognize that the family is not built around him.
It’s built around God. So that was a pretty significant intentional decision we made early on that, uh, has helped us, I believe, sustained through some very, very challenging years.
David Hirsch: And I will. Thank you. That sounds like maybe a modest shift has had a profound impact on the way you think about. Prioritize and the decisions you make about allocating, you know, limited resources.
Every one of us has limited resources, time, financial resources, et cetera. And it’s easy to get sort of sucked into doing everything you absolutely can. You know, you might realize that you shortchanged your marriage or you shortchanged a sibling or other extended family members because you weren’t present.
And that would be a tragedy as well. Yeah. So what impact has Caleb situation had on Jaron as well as the rest of your family for that matter?
Steve Bundy: Yeah. So Kayla has had a significant impact on, on Jaron. Uh, so Jaron is, um, 15 years old and he is our, what we call typical sibling. He’s our typical child. And Jaren is kind of, um, he is your overachiever, if you will.
So, you know, one extreme, we’ve got Caleb, uh, with a very physical and cognitive limitations, and now we’ve got Jared on the other side and he’s kind of right. Brain left brain. So he’s high academics, he’s high musically skilled he’s high on athletics. Uh, you know, he’s a sports player. Um, and so. Jaren has just kind of this thriving kid, but he, he is what I would call a 15 year old where the, the waters run deep.
If you know what I mean, he’s got a very deep sense about him, of life. He, he knows how to have fun and be joyful, but. There’s a maturity about him. Uh, there is a, uh, an aspect of appreciation of life and a care for people that, uh, I, I, I know him dad, so I’m biased, but, uh, I will tell you from the observation of other.
People who know a Jaron and a other parents that he’s a very mature young man. And I attribute that not so much to Melissa and me and our parenting. I wish I could say that, but, um, I really attribute it to the impact of KW on Sharon’s life. And, uh, I think like a lot of siblings, you know, he has. He’s learning how to work through his emotions.
Those some days are easier than others. Uh, but one of the ways that Jaron, uh, for example, has worked through his emotions is, uh, as a soul, he’s a songwriter and he wrote a song about his brother and, uh, the song is titled half to wait. And, uh, the song is, is as its title. It’s it expresses. The joy, but the anguish of a sibling.
Oh, when the reality of this life has not everything you want it to be with your, with your brother, brother. I love you more than words can say, no, you would say the same, I guess with
all the time. I know that you would just have to wait.
you don’t know how many lives you have.
Straw, you go through spy that we love every day, get a blessing and someone can explain,
and there are some things. We’re just going to have to wait for that will come someday, but it’s not going to be now. And that’s painful, you know, and that’s what the song reflects. And so you, you hear the, the emotion coming out of this sibling with a profound maturity at the same time, recognizing that, you know, I love and appreciate my brother.
Uh, but there are some things, some really hard. Things about it. And some things that we’re missing, there’s a loss. And yet he has an eye towards the future. He knows there’ll be a day in eternity. That those things there won’t be those barriers any longer. And all those things you’ll want, you would want to do with his sibling will be a reality brother just can, I’ll wait till then one day and we’ll play it.
Never have to go away.
So Caleb’s had a profound impact on, on Sharon and it goes without saying a profound impact on my wife, of course. And I’ve got, uh, the greatest wife in the world. I definitely married up. There’s no doubt about it. I can relate. I think most men listening can, so my wife is pretty amazing. She is not just a wonderful wife and a wonderful mother.
She’s also a nurse by trade by training. And here’s a woman who knows the definition of sacrifice early in her career as a nurse is when Kayla was born. And so my wife set her career aside for 14 years as a nurse to care for Caleb, basically. And that’s a huge sacrifice. I mean, we talk about sacrifices and our kids and so forth.
Um, and sometimes we just overshadow, we overlook these things, but you know, like me, she had dreams and hopes and aspirations that she set aside to care for Caleb in all of his disabling conditions. And it wasn’t until Kayla was about 14 years old where my wife came and she said, you know, I think. We’re in a season that may be a, we have enough care givers around us and some support that maybe I can return to my passion of nursing.
And I’m so proud of her. She’s done that. She’s picked that back up, reinstated her license and she’s gone for it. And I’m proud of her for doing that, but she’s an amazing. Woman who has now not only the skills of being a nurse, but the compassion that the heart of knowing what it’s like, uh, as a caregiver, as watching a loved one suffer.
So she has this added dimension of compassion to her then, and that was that’s from Caleb. That all of that credit goes to Caleb.
David Hirsch: Yeah. Well, it’s amazing how. Influential different individuals in our lives can be men. Traditionally, we think about it as older individuals passing along their wisdom. And what you’re describing is just the opposite.
You know, you’re learning about yourself and your strengths and weaknesses from one of your offspring.
Steve Bundy: That’s very powerful. So
David Hirsch: beyond your personal experience, With special needs. I’d like to spend a few minutes talking about the work that you do at Johnny and friends, which is a Christian disability ministry.
What’s the background on the
Steve Bundy: organization. So John and friends was founded nearly 40 years ago by Johnny Erickson, Tada and Johnny is our founder and still our CEO. She is an amazing woman that God has sustained through now, 50 years of quadriplegia. So when Johnny was 17 years old, she took a dive into a river, broke her neck.
I think it was a C4. And it’s given her quadriplegia since that day. And the short of it is as a 17 year old devastated now by quadriplegia, her, her prayer was basically, you know, God, I can’t live this way. And, uh, she wanted to end her life. I mean, she didn’t see a reason to go on, but obviously as a quadriplegic, there really wasn’t anything she could physically do.
And so she cried out to God and she said, if I can’t die, would you teach me to live? And I will give my life to you. And long story short, 40 years later. We are an international disability ministry. And so our mission really is to communicate the gospel, but it’s also to come alongside churches and to equip them that they would be able to be inclusive.
They too would be inclusive of people affected by disabilities. And so we come alongside, we cook the church around the world and we do that through a number of programs. Our wills for the world program. Uh, we distribute thousands of wheelchairs around the world in developing countries. And these are countries where individuals would never have access to a wheelchair.
They just don’t exist. Resources aren’t available. And we provide wheelchairs. We take therapists and professionals. We fit them to the wheelchairs. We do that with our international partners, INGOs and churches. We also have what’s called family retreats. We welcome the entire family that has a disabled loved one.
Now this could be children, it could be a spouse. It could be a disabled parent, a to five day retreat for the whole family, filled with fun and laughter and we have small groups and. It’s a faith base. It’s surrounded centered on biblical teaching and it’s just life changing for the whole family. And we do that around the world.
This year. We, I think have 68 family retreats. About half of those are in the U S and the other half, or spread out about 15 countries around the world. So we do a lot around the world from the Institute as well.
David Hirsch: Is there a television series as well?
Steve Bundy: There is. We have a television series on our website, television and radio, and our television series are just an amazing collection of 30 minute episodes that revolve around hold true life stories.
And these are well done. David, I got to tell you these aren’t, you know, just done with a, with a hand phone or, you know, video camera or something. These are professionally well done. Television episodes that walk through life, uh, and tragedy often with a disabling condition, but it also focuses and points on the issues of hope and they’re inspirational.
I encourage any listeners to go to our website, click on any television episode, you will be inspired.
David Hirsch: That’s fabulous on the radio program. Is that a weekly, how often has that aired?
Steve Bundy: The radio program is a very short program by Johnny Erickson, Tata herself. And so those are on thousands of outlets across the country.
However, you can go onto our website and you can find out stations. You can also listen to some of those episodes that have been translated. Into podcasts and so forth. They’re really short little like devotionals and encouragements from our founder, Johnny arcs and Tata. And we have thousands and thousands of people listening to those around, around, well, not just the country.
We do them internationally now as well.
David Hirsch: So they’re translated into various languages.
Steve Bundy: They are translating to Spanish and Chinese at the moment. I think maybe a couple of other languages. And we’re continuing to look at ways to, to expand that. Okay,
David Hirsch: wonderful. So let’s switch gears. Um, what brought us together was that, uh, I read.
The book that you and your coauthor, Doug Maza wrote another kind of courage. It’s an excellent read. What was the impetus for the two of you? Doug is the president and COO of John and friends. What was it that brought the two of you together to write this book?
Steve Bundy: Really the impetus for that was how do we come along?
Side other dads, especially new dads, or even if you’re not a new dad, even dads that have been at a, for a while, how do we come alongside them and tell them, you know, first of all, you’re not alone. You know, you’re not the only one on this journey. Tell him, secondly, you know, it’s okay. You’re not going to be perfect.
You’re going to make mistakes. You’re going to have those moments, which are not your greatest moments as a dad, but guess what? There is hope there’s encouragement, and we want to help you figure out a way to navigate that. So, Our desire. You know, Doug is about 20 plus years older than myself. Uh, his son, Ryan is, uh, in his late thirties.
He has, uh, his son, Ryan has special needs, and then you have my son Caleb. So we kind of come from two different generations. And so we thought, well, why don’t we come together with advice as fathers, different generations coming together about some of the things we learned along the journey, along the way.
And we want to pass it on to other fathers so that they would know they’re not alone in this. Try to give a little bit of a, of a roadmap to the degree that we could help them figure out, you know, These are where the landmines are. Don’t step on the landmines. You know, here’s a path, here’s some tips, here’s some guides best practices that we’ve learned along the way.
If we can pass those on to other dads, and then we’re thrilled that we’ve helped another dad get further down the road, have a healthy family, thrive in this marriage, thrive as a father. And, uh, I I’ve been honored and blessed. Dave, too, to hear from dads all around the world that have been impacted by the book.
And so I give, I attribute both Doug and I. Attribute all of that to our sons, not us, but to our sons.
David Hirsch: Yeah. Well, it’s fabulous. Uh, what I really enjoyed in addition to learning about your situation about Doug’s situation and you both speaking from the heart, is it that these are real life stories from dozens of dads, raising children with special needs.
So it’s not two dad’s perspectives, yours and dogs, but it was literally dozens of dads sharing their stories.
Steve Bundy: That’s right.
David Hirsch: And it was this like pallet. Right with all these different. Colors and socioeconomic groups and situations. So it’s not one size fits all. Disabilities is not one size fits all. So I don’t want to say there’s something in that book for everybody who has a child with special needs, but you covered a lot of the basis.
And while there’s some overlap, some of the grieving and some of the different stages that you go through, I think it’s important that people can sort of see themselves. Um, and what it is that you and Doug put together.
Steve Bundy: Yeah.
David Hirsch: So I’m going to read an excerpt, very short exert, and I’d like you to share your thoughts.
One of the quotes from the book is real men don’t walk away physically, emotionally, or spiritually. And what struck me about that is that you may or may not be familiar with the great dad coin that we created about five years ago. And these are coins that we give to dads to honor them. For being a great dad and on the face of the coin, literally on the face of the coin, it says, great dads are present physically, emotionally, and spiritually.
And those words . Off the page at me, it’s like, Oh my gosh, we are talking the exact same language. What was it that motivated you to think about things at those three levels, physically, emotionally, and spiritually?
Steve Bundy: Well, first of all, that’s really exciting. And I, I did not know about the coin, but I want to get one.
David Hirsch: I will make sure that happens when I’m in California.
Steve Bundy: Thanks, David. I think. What we were attempting to do there. David is hit the three areas where a man is, is prone the tobacco. And so you, we could spend I’ll hit it on the surface of it. Cause we could go deep in all those areas. But each one is an area where a man can get weak in the knees.
It’s physically, uh, as men, we, we tend to be physical. And so there’s ways that we need to physically be present with our families because we tend to, to want to be physically somewhere else. We want to, when we can’t figure out a situation when we don’t have the answers. We would rather go somewhere else.
And these aren’t bad things. It may be another place where, uh, you’re getting, uh, you know, the ball games for, and that may be at, or maybe the bar may be some other place where, you know, not that these are bad things, but they cannot replace our family. And that’s where I seen so many dads and husbands check out and the real big ones at work.
Well, you’re just a, well, I got to be a work. And so work becomes, you know, 24 seven almost. Anything to avoid having to be physically in this place where I don’t have the answers. And then emotionally, uh, we can be, as I shared my own story, uh, I was, I was home. I didn’t physically check out or leave, but emotionally I checked out or I didn’t want to deal with anything emotionally.
And so we become very vulnerable there as men, if we’re not careful. And that’s where we have to. Uh, really guard ourselves against allowing, uh, fantasies and thoughts about, you know, another life for another, this or another, that to dominate us. So we have to discipline ourselves to say, you know what, it’s hard, but I’m going to emotionally engage my wife.
I’m going to emotionally engage Mike. My kids are my child and the therapist. I’m going to emotionally engage with the doctors and when emotionally engage. Um, and of course, spiritual. Um, and one of the things I, I bring out there in the book that fear and pride anxiety often leads us to a place of anger if we’re not careful.
And so we have to guard ourselves spiritually from becoming angry men, and that also can be a tendency for many of us. I noticed for me, I share that very openly in the book where I have to guard myself. From becoming angry about life circumstances or shortfalls or, uh, whatever may stir me, uh, to want to have a short temper.
Uh, just to say the wrong thing, you know, just to not talk nice, uh, to my wife and my family at times where I’m irritated, uh, you know, we’re pressures are on, uh, as men, we have to guard ourselves, uh, in all those circumstances and situations. So we can really lead our families in a way that we want to, ultimately, we want to.
David Hirsch: Yep. I love it. Thank you. So another one of the quotes that struck me was that looks of pity, vague parents of children with special needs, want to hide.
Steve Bundy: Yeah. You know, it’s, it’s interesting because, um, I’ve had people ask me before, uh, when I’m giving lectures and I’m speaking, uh, about, uh, welcoming families into your church and your community and so forth.
And people will ask the question. So, um, do you, do you think parents will be offended if I ask about their child? And my response is always no, of course not. Why would a parent be offended? Uh, we welcome interaction. We welcome questions, you know, um, what does become offensive is. Uh, the lack of engagement.
It’s the, it’s the walking away from it’s the walking around, it’s the stairs. It’s the self pity of poor you. Um, and that’s not what parents need nor, or are they looking for, uh, they want engagement with. You, uh, you know, as a family and your child as a child. Um, and so, you know, one of the things that society is attempting to do is call people first language, you know, where we focus on the person and not the disability.
And, uh, there’s, you know, I think some relevance to that. Um, you can’t ignore the disability. That perspective also frustrates me cause the disability is real, but at the same time, you know, Johnny is Johnny, Johnny with a disability. Uh, Susan is Susan with a disability. And so we love it when, when other families and people will engage, not give stares of pity or.
Or other forms of trying to, uh, kind of, I don’t say patronize, but, but forms where it’s not real, it’s not authentic. We want authentic engagement. Yeah.
David Hirsch: Well, I think I understand what you’re saying and what we need to do is make it as easy as possible for all people, not just dads, but moms and every other family member to engage.
Right. To just be curious, not judgmental, you know, it’s easier to say than it is to do like a lot of things in life. And once you do it, it becomes part of a habit or practice, but it’s like a lot of other things in life. If you’ve never been around somebody with disabilities, it’s awkward or can be awkward.
And I think parents have to make it as easier welcoming as possible if they have a child with special needs to help others engage.
Steve Bundy: Yeah, absolutely.
David Hirsch: So, uh, another quote that. Struck me is that you have the right to be emotional when there are no answers for your child’s special needs, but you don’t have the right to give up.
That’s a pretty powerful statement.
Steve Bundy: That’s right. Um, you know, I heard it said recently that, uh, God has entrusted us with the care of our children. We, we have an inherent responsibility. To our children. We brought them into this world. Now we have given them life. And, uh, despite the challenges that may come, uh, with our child’s disabling condition, we have a responsibility to them.
As men, as fathers, I mentioned earlier about not emotionally checking out. We struggle with emotions. No doubt about it. We struggle understanding our emotions. We struggle communicating our emotions, but just because that’s a struggle does not give us a right to abandon our responsibilities. So we have to work through those emotions.
And, uh, no one ever said, it’d be easy. It’s not easy. Well, we have to work through those with family, with our friends and find support to help us work through those emotions. And so those are of God he’s given us emotions. They’re not wrong. We don’t have to be afraid of them. We just have to embrace them, work through them and get our emotions to line up.
With our God given responsibility. And so, um, that’s one of the reasons that quote is, or that statement is in there.
David Hirsch: No Falwell said thank you. Um, another quote is thinking we are in control of our lives as just an illusion and having a child with disability is destroys that fantasy. When was it that you came to that
Steve Bundy: realization?
Well, I’m laughing because, uh, any father listening with a child with autism will get that right away, thinking we’re in control of anything in our lives is a complete illusion. In that regard. All it takes is to walk into a, uh, a noisy room with your child, and you’re going to learn right away that, uh, you, you, uh, are not in control.
Uh, you know, one of the things that Caleb has done. I know from our lives and I know lots of other families and it’s not just with autism. It’s really every, just about every disabling condition I would, I suppose, is take it. You know, he forces you to take away the pretense. You know, um, I mean, people show up and they want to give this image that it’s, they’ve got it all together.
Right? Everyone’s dressed, Ryder ones look, looks right. All the everyone’s hair is combed. I mean, even in the church, we have this pretense, you know, uh, we want to appear like we’ve got it all together. Uh, but I tell you when you have a disabled child, Especially one with an autism man. People know you don’t have it all together.
You just have to work through the realities that, uh, I, you know, there are some challenges in, there are some really difficult circumstances in life. And at the same time, there’s a little bit of freedom in that. Because no one actually has it together. There’s no family that actually has it together.
There’s no marriage that has it all together. There’s, you know, every family has challenges. Every family’s going to work through some crisis. And, uh, w we have just left the pretense of that. Somehow. We’ve figured it all out. We’ve got it all together. Uh, cause we don’t. And so, uh, that, that that’s an illusion and disability will often crack that mirror of illusion.
David Hirsch: Well, I think of it has a silver lining, if you will, right. There was some dark days, dark periods of time. But, uh, you know, when you reflect on that, I think that’s what you were saying. Certain respects, you know, take some of the pressure off too, to try to create that facade that I’ve got it all together, which is very time consuming.
It just SAPs your energy and, you know, you have to question, am I being authentic or are we just doing this to, you know, sort of portray our situation in, in the best light possible, and it’s not misleading. It’s just that, that’s how we’re wired as human beings.
Steve Bundy: Yeah, absolutely.
David Hirsch: So, what are some of the more important takeaways that come to mind when raising a child with differences?
Steve Bundy: Well, you know, there’s so many, and I’ll just try to give a, give a few David. I, um, I think, uh, a couple of things that come to mind is, uh, I refer to this earlier and I’ll, but it’s worth restating. Um, Special needs can be so overwhelming. And I know this well, 19 years with a son with profound disabilities, um, and challenging behaviors.
Uh, I know this well, uh, that all of life can be consumed by these needs and all of your family can be consumed by the needs. And as leaders as fathers, we have to be very diligent to, um, meet the needs of our. A special needs child without allowing. That to overwhelm or overshadow all the other needs of the family members.
Um, and so it’s so important that we’re able to keep that in perspective, uh, keep God at the very center, make sure the other. Uh, needs of the family are being met or at least given attention attention to, uh, which leads me to, to really the sibling point. Um, probably my second point is, is that, uh, as fathers, we have to make sure that even though our special needs children’s time do absorb a great.
You know, a great deal or their knees rather absorb a great deal of our time that we’re given proper attention to are the other siblings in the family. Um, we, what we don’t want is the care we have for our special needs child. To be at the detriment of the care for the typical, our typical children. And again, it takes intentionality, uh, as dads, we have to be very intentional about finding that balance in our lives.
And that I will tell you that may very well and most likely may mean some sacrifice in career advancements. Uh, those kinds of opportunities. It’s just a reality, uh, when you’re. You’re trying to strike that kind of balance in your, in your family. Not always the case, but it may be the case in some circumstances.
And, uh, in the book, I have a little acronym tag, which is time, attention, and guidance. And, and that’s what I’ve learned. Uh, the siblings will need a time of, of dad presence. How the do the time, the attention, undivided attention and, and guidance for life, you know, helping them guide, navigate life, especially with a disabled sibling.
And then I think the third thing is, as a parent, you are the advocate for your child’s development. And so. You know, one of the things we’ve always tried to do is to advocate for what’s going to give Caleb the best opportunities for his success of Laura’s apparent. I can’t create his success. You know, he has to be as successful at the, to the degree and to the, the abilities that God has given him.
Uh, but at the same time, I need to be his. His biggest cheerleader. I need to believe in him. I need to be the advocate for him, um, in, in those circumstances, in those situations. And that almost always falls on the mother. And I would say to dads, you know, I wanna encourage you to step up to the plate. And you take some of that burden off your wife, take it off the off mom, and you show up for the IEP.
You show up to the doctor’s appointments. You show up to the social services or whatever is in your state that helps provide various services for your family and your child, and take a lead in that. And I think you’ll find it’s a big impact on your family and your wife in particular. I think it
David Hirsch: goes back to the message that we were talking about earlier about being present physically, emotionally, and spiritually.
Right. That’s right. You have to be present. Yup. Yup. So why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
Steve Bundy: Well, I tell you, David, when you, you first told me about, I learned about it. I jumped at the opportunity and some of it’s related to things said in this interview, You know, when I was a father in the, in the first, early years of fatherhood with a special needs son, I was looking for guidance.
I was looking for, for a path. I really didn’t find, uh, in my journey, uh, anyone around that had kind of gone before me, so to speak had been on a similar path to, to come alongside and to mentor me and to, to help assure me that not all is loss. That there’s hope there’s a future, you know, just someone to come alongside and say, you know what?
You got this. That kind of encouragement that kind of mentoring someone to bounce off questions? Or what about this circumstance? What are this about the situation? And, you know, Hey, how do I guard my marriage in the midst of all these challenges coming at me with special needs? I wish somebody had been there for me.
Um, and so, um, if I can be that. Mentor to another young father, uh, man, I’m, I’m there. Uh, I look forward to doing that.
David Hirsch: Yeah. Well, thank you for being part of the group. Sincerely. Thank you. So is there anything else you’d like to say before we wrap up.
Steve Bundy: You know, my gratitude, uh, to you David, into fathers, uh, special fathers network, uh, this is so needed.
And, uh, I’m so grateful that you’ve taken up the banner and the mantle to, to take this on and to, to spearhead this. Uh, so I appreciate it very, very much, and God bless you for your efforts. And, uh, I appreciate the opportunity to be a part of it. Well.
David Hirsch: Thank you. So if somebody wants to get information on Johnny and friends or to contact you, where would they go?
Steve Bundy: A very simple, you can go to www.joniandfriends.org.. Ah, and so you can find out everything you need to about the ministry. And if anyone, anyone wants to email me, my email address is simply Sbundy@joniandfriends.org.
Great. Thank you, Steve. Thank you for taking the time and many insights.
David Hirsch: As a reminder, Steve 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 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.org.
Steve, thanks again,
Steve Bundy: David. Thank you.
Tom Couch: And thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of kids with special needs presented by the Special Fathers Network. The Special Father’s Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.
It’s a great way for fathers to support fathers go to 21stcenturydads.org. That’s 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: And again, to find out more about the Special Father’s Network, go to 21stcenturydads.org, 21stcenturydads.org.