Episode Transcript
[00:00:00] Speaker A: Welcome to Shining Through Inspiring Voices with Autism with show host Jennifer Dantzler. My name is Bryant and I have autism. Thank you for taking the time to learn about the world of autism. If you enjoy what you hear, make sure you like and subscribe and follow this podcast.
[00:00:17] Speaker B: Hey, everyone, this is Jennifer Dantzler, and I'm the executive director and founder of inspirend, a nonprofit whose mission is to create truly inclusive communities through education and engagement. The goal of this podcast is to shine a light on real people and their stories in hopes of inspiring others who are on this journey of autism. Either themselves, their child, their loved one, their co worker. I truly believe ignorance is not bliss, and we cannot be inclusive communities if we do not understand the people in the community.
With autism now affecting 1 in 31 people, we need to get louder about this topic. We recognize that autism is a spectrum. There are a lot of people with a lot of different needs, a lot of resources available or none available. And we know that in every episode, we can't meet everyone's needs for their specific interests.
However, we hope that in each episode you do gleam some kind of insight as to how you can help your child or yourself be a better advocate. And as we go through our podcast, our goal really is to address the entire spectrum, the various needs, the various environments that we're going to be in. And we hope that there's something in every episode for each one of you. So let's get started.
Today we have a really interesting guest with us who has many, many hats, to say the least. His name is John Fella. He's the father of a son with severe autism.
He's a former educator, a national disability advocate, and speaker, the author of Faith Like My A Special Needs Dad's Journey of Faith and Redemption. John, thank you so much for being here.
[00:01:47] Speaker A: Absolutely. Thanks so much for having me.
[00:01:49] Speaker B: Well, and I love this because I think there's a lot of conversation out there for the moms of the world and even for your neurodiverse or autistic people. And I think dads, we don't talk enough to dads and about dads and how to support dads. So thank you for being here.
[00:02:04] Speaker A: Of course, this is what I do. And you hit the next the nail on the head in terms of the need for support, certainly for all parents and moms, of course, but definitely the dads, because again, there just isn't enough out there. And the things that are out there, unfortunately, a lot of guys don't know they exist.
[00:02:19] Speaker B: Right. So talk to me a Little bit about. What do you think the greatest challenge as a special needs father is?
[00:02:24] Speaker A: So I think there's several. Some of those early experiences I had as a dad, the first thing I really experienced was essentially just the loneliness. I learned early on that I really just didn't have a lot of support as a dad. There's a story that I frequently tell called a tale of two Parkinson lots, which involved two parking lots, and that's why I called it that. But I remember in the early years of my son's diagnosis, he was probably about four at the time. It was a season of life where basically just everything was going wrong. My wife and I attended a church, and the church had a men's group that met on Friday night. So I was waiting in my car to walk into the building to go to this men's group. But. But again, in terms of everything going wrong in life, we were struggling to figure out what to do with our son's diagnosis.
[00:03:05] Speaker B: He.
[00:03:05] Speaker A: He technically didn't have the autism diagnosis yet. It was actually pervasive developmental disorder. If anybody REM with that is. We were struggling to figure out where to place them in school, what that was going to look like. I had actually suffered a job loss earlier in the year. We were struggling in terms of our finances, our marriage, you name it. And I remember I had placed a call to a couple of dad friends of mine. They were old buddies from high school and college, and they kind of knew what was going on, but not really. And I laid it out for them. I will correct myself. They weren't dads yet at the time, but they were married. I explained everything that was going on, and their response was basically, sorry, man, we got nothing for you. We love you. We don't know what to do for you. And in fact, one of my friends said, if I were you, I just. Just walk away. I can't do that. And they were like, well, you know, we're here for you. Just keep us. Keep us in the loop. And so I go into this meeting, this men's meeting, and most of these guys were at least 20, 30 years my senior. I was in my late 30s at the time. And I'm thinking, I'm going to get some sage wisdom, some really great advice, some really great, you know, pats on the back or a hug or something. You know, we're here for you in the group, when everybody kind of goes around the circle and shares what's going on. Again, some of these guys knew a little bit, but not everything. And I just laid it all out there. And after I was finished, there was like dead silence for about 30 seconds. And finally the group leader chimed in and said, you know what? That's tough. We're really sorry to hear that. But what you need to hear is that it's going to be okay sitting here today having this conversation. Do I know it's going to be okay? I do. But that's not what I needed to hear in that moment. What I needed to hear in that moment was, we're here for you. What can we do? How can we support you? Let's figure out a way to walk beside you. And that's when I learned I had no support, but nothing that would really support me in my journey as a special needs dad. So for most men, it really starts out with, you don't have anyone that understands you. And then, oh, by the way, are you interested and willing to find support? In my case, I was. And to be fair, there are a lot of special needs dads out there who are wonderful guys and like me, have either looked to either find community with other dads like us or build it, or in my case, both. A lot of guys start out with, you know, the guilt and the shame of I've got a child with a disability the way that most men are wired, and this is something that I've gotten from a lot of dads and moms around that I've spoken to. You know, men are fixers. Something's going on with your kid. We want to figure it out. What does it take? So usually what that amounts to is let's find the doctor, let's find the therapist, let's find the treatment. But oh, by the way, when something doesn't work or many things don't work, especially in our case, for example, then what. How do you wrap your mind and heart around the fact your child may be like this the rest of their life? Right? And for a lot of guys, they honestly just can't handle that because they have expectations and dreams for their child. And especially where it's a male child, by the way, where I think a lot of dads saw them as being able to do the. Let's play the travel sp sports or go hunting or fishing or, you know, whatever your thing is. Now all of a sudden, none of that may happen, or at least not in the way you expect it to. So for a lot of dads, they. They just shell up and, and they don't want to share it again out of guilt and shame. And then the issue then becomes, if they're not sharing if they're not getting that support. What you also then find is for a lot of dads, even the well meaning ones, they throw themselves into their work. They try to make as much money as possible to pay for all these things. What's interesting about my story is I was never the guy who could just write the blank ch educator for many years, as was my son's mom. Technically, she always made more money than me. So I had to also figure out what I actually contributed. I, I wasn't the sole breadwinner. She did a great job with managing everything in terms of insurance and doctor's appointments and all these things. And that was great and I was okay with that and that was something she wanted to do. But then I had to figure out what I actually contributed. And so a lot of men, I think, also get lost in the shuffle. They, they get lost in their family and they lost in their marriage because they don't know how to cope and deal with this new kind of role. Maybe they understand what it is to be a dad, but a dad with a child of a disability, a special needs dad, that's a whole different journey. And if you don't have guys who have been down that road who can speak into your life and talk to you about how you manage these things, then you're going to find the guilt and shame for sure. But you're also going to find the emotional separation from your family, from your child, from your spouse. That's where the real problems happen. And that's where hopefully we can get guy support long before it even gets there.
[00:07:21] Speaker B: Wow. So much there. So much there. So you left that men's group and you realized you were still a lonesome soldier. Like, what'd you do after? First of all, how old is your son now?
[00:07:31] Speaker A: He's 18.
[00:07:32] Speaker B: So what did you do after you left that group?
[00:07:34] Speaker A: I don't have anybody, at least anybody that gets me now. I'm going to tell you that it was a long, slow climb. I had to somehow find community or make it or both. Some of the early things that I tried and by the way, things did get better. You know, we did kind of come out of that really struggling season we were in. My son grew up in the Chicago suburbs, so we moved from one town to another where it was a much better setup in terms of the school district and, you know, support and everything like that for him. And so one of the early things I tried was just a meetup group with the guys from the families that he went to school with. And this is something that I often encourage people when I talk about, you know, how do you do this if you don't have anything? And I always say, start out small, start out local. Just connect with the folks around you because you're probably going to find somebody. So I remember that I started, started a men's group and we met at this local restaurant. You know, we got about 10 guys out there and I'm like, wow, this is great. We all had a good time, great sharing, wonderful experience. I tried it again the next month and I had two guys. I tried it again the next month, I had one and then I'm like, I'm good. It was a struggle because that's another thing is that many times for guys, it might be something you try once or twice. But again, if you're not intentionally seeking this out or really making a committed effort to it, you know, it's just kind of this throwaway thing. Yeah, maybe I'll go, maybe I won't. You know, it doesn't really matter. I don't care. That's not to say that guys who are like that, you know, they, they don't, they aren't good dads or don't have strong families or marriages. But it just means that again, most men are just not wired that way. There, there's a joke I like to tell. If you put 10 special needs moms in a room and they don't know each other, but you stick a bottle of wine in a box of Kleenex in the middle of the table, by the end of the night, they're best friends. You try to do that with a bunch of guys, you get two words from them. It was a long, slow climb after that. And that was a good, interesting experience. But after a few, the things that I did was I tried to reboot that men's group. Now this time the difference was I had joined a Facebook group for special needs dads. I had found they actually did an in person meetup. However, it was too far from where I lived. It was basically about a couple hours away, but there were a lot of local guys in there. And I met a guy who actually asked, hey, is anybody interested in starting a group in my area? And I'm like, sign me up. So me and him put this group together. We actually met at the same restaurant in my neighborhood because why not? It was right down the street from me. And we wound up meeting there and getting it off the ground. And that group lasted about 10 years.
[00:09:57] Speaker B: Oh, wow.
[00:09:57] Speaker A: I've just kind of moved away from it more recently just because it was too many things juggling on. On the old plates there. You know, we. We made it very intentional. We made sure guys were comfortable. There was a structure, but it was a loose structure. What I've also found is if you give guys too much structure, they don't like that. But if you don't have any structure, then you get a bunch of guys who are just staring at each other and not knowing what to say. I did things like, for example, like not only encourage guys to introduce themselves and talk and whatever, but I would also always try to get a guest speaker because guys, of course, they.
Back in the classroom kind of attitude. I'm just going to sit back here and listen to what this nice person has to say and, you know, maybe I have a question or maybe there's something that somebody else is, you know, we have in common or whatever, different things like that. I also learned from, you know, certainly, you know, just doing support groups. My son's mom and I, when we were married, we used to do a support group actually through a church we attended for the special needs parents as well. So we actually ran that out of our home. Early experiences like that with really doing a lot of this grassroots stuff in our community with folks, you know, that, you know, that my son went to school with or, you know, just other special needs, you know, dads I would meet or even the parents, let's say, from. From a church environment and all of those things, you know, kind of trained me and gave me this experience of, okay, this is kind of how you run a group. This is how you can, you know, kind of interact with dads and speak to them and kind of get everybody on the same page. And then of course, that led to much bigger work and working with national organizations that support dads, where not only was I able to certainly contribute some good experience, but I also learned a lot from, you know, a lot of guys who, who, like me, started out really with. Without having anything. And then, of course, you know, you never know where you know how things blossom and grow because you find out a lot of guys actually need this and a lot do want it. You just again, have to be open and willing.
[00:11:39] Speaker B: Okay, so let's talk a little bit about, you know, your church experience, because I know this is a very hard one. I get asked this all the time about what churches do, you know, locally that have special needs groups or whether it's support groups, because back we could have a whole podcast just on the Whole support group concept. Right. Because I see a lot of support groups fail for the reasons you said. Too structured or not structure enough, it just becomes a complain fest. So therefore people don't want to go back, you know, all kinds of things. But especially in the world of faith, for those obviously that have a spiritual faith and then they can't go access that or being online, watching it on Zoom still isn't the same. Right.
So what can churches do? What have you found that's worked? Not worked, like how can we get churches to be more supportive of our special needs families?
[00:12:24] Speaker A: Yeah. And this is actually a very unique area of my work because not only do I have the experience of being a parent and working with the churches that we attended to help support those things, or as I mentioned, trying to put together a support group at a previous church years ago, I also worked for Johnny and Friends, which is a global Christian organization that does a variety of things. But one of the things they do is they actually train churches on how to do disability ministry and put programs together and things. And even before I did that job, a big part of my advocacy work was working with other organizations that are church based for disability. And I actually started out doing, writing and speaking for them. And that actually is kind of what also helped me get my, my advocacy career off the ground here. But in my experience, it's a few things. So first of all, what I always tell people, whether I'm actually just sitting down and meeting with, let's say, church leaders or if I'm actually doing a training, which I still do as part of my advocacy work. People with disabilities are the largest minority in the world. It's 1 billion people worldwide. That's not me saying it. That's the World Health Organization. Studies have shown in the US because there are actually research groups at different Christian colleges and universities around the country that do these studies. Studies that say it's really only one out of ten churches that have a formal kind of support or ministry for them. Now why is that? Well, what we have to understand is that most churches, when they think of disability, it is something that is so far out of left field for them, it's a world that unless they have a direct experience of it, they don't understand, they're afraid of it for a lot of reasons, and in some ways they don't want to touch it. I actually go through this kind of list of these, like five mythologies or urban myths, whatever you want to call them. And I share this with churches. And so a lot of Happens with churches is one, they think, oh, disability, special needs. Well, how much is that going to cost? You know, aren't we going to need to buy a bunch of stuff or we need to add a whole new thing to the church? And I say, listen, this is not about what you can buy or whatever. Like, believe me, if you want curriculum, if you want supplies, if you want this, that, and the other, I can help you buy it. But you know what? It doesn't cost anything. Because this is really more about your attitude, your approach, welcoming families like ours.
[00:14:29] Speaker B: Right?
[00:14:29] Speaker A: And families like us know. We know when we're wanted. We know when you want us there. We know when you're freaking out the minute we walk in, like, what do we do about this? Right? So more of the issue is what is their general attitude, right? And. And the bottom line is, you know, and again, talking and with and. And training these churches. It comes from a biblical scriptural place. Welcoming people and families of disabilities is a, as I like to say, an obligation and an opportunity. It is an obligation because there are plenty of places in scripture, Old Testament, New Testament, whether Jesus said it or someone else said it, that you need to be welcoming these famil to be a part of your community. You might be afraid, you might not be sure what to do, but your attitude in saying, hey, listen, we don't have a formal anything. We would love to support your family. How can we do that? Can you explain to us what we can do? A lot of churches are just afraid of that. And then of course, it gets into things like, well, we don't have the money, we don't have the space. There are plenty of small churches who. And believe me, my church is very small. And you may not have a lot of room for a kid's ministry or a youth ministry or this or that, but you may make it work. It's the same thing. You know, a lot of these supports don't require you to build a whole new wing onto the church. Some churches believe that, hey, you know what? We don't have the right training. That's understandable. But guess what? There are tons of organizations. I mentioned Johnny and Friends. There are a bunch of others that I'm involved with, and again, I also do that myself. So if you're hearing this, and in the Chicago area, I'm someone you can reach out to, because it's one of the things I do. So you can get trained, you can get your volunteers trained, you can get your leadership trained. You can kind of bring everybody to an understanding of, okay, this is how we can support either the families that are here or the families that might be coming here. You know, some of those other last myths too are, you know, there are churches who will say, well, we don't have anything. But you know what, that church down the street, yeah, they got a big thing for those disability families. Why don't you just go there? That might sound nice, you know, in terms of the intention of it, like we don't have something, but at least let me point you in a direction. But what if that family really wants to be at your church? What if your church is the, is the one that your family wants to be at? Maybe it's a church that your family grew, grew up in, generations grew up in. And now all of a sudden, well, yes, there's a child with a disability in the mix. That shouldn't prevent us from still being a part of that family. It's those kind of well meaning things of, you know, well, we don't know what we're doing, we don't have the resources, we don't have this. Look, all it takes is a heart to love and serve people. If you can do that and do that, well, everything else will fall into place. We can work with everything else. But the problem is that churches get so caught up with, I don't understand this, I don't know anything about it. We have enough going on. And unfortunately it's one family. And I will say this, I think most churches mean well. There are horror stories and a lot of your listeners may have actually experienced them as well, where churches are not very kind and basically say we don't want you here, we don't want your child here.
And to be fair, they're not therapeutic day schools. This is not a sped environment, but it doesn't mean you still can't welcome them and find a way to make it work.
[00:17:25] Speaker B: So true. And even the church I attend, I went to them and said, I really want to help you establish this more. And a lot of what I think some of the churches are seen too is they might have had a special needs preschool or supports for when the child was four and now the family's heavily involved in church and the person turns 13, 14, 15, and then the church has nothing to offer that family. And now that family's been invested in that church for 10 plus years and they're having to still go elsewhere because there's nothing for that adolescent or young adult.
[00:17:56] Speaker A: And that's also a really interesting wrinkle in that conversation too because I was interviewed a few years ago on our local Moody radio station in Chicago, and I was speaking to this topic, and the first question out of the interviewer's mouth was, so, what do we need to be doing for these kids? And I'm like, well, first of all, let's back that up just a little bit. And remember, we're not just talking about kids, because you're correct. There is this default, you know, kind of impression of, well, it's just the little guys. And what do we do for the little guys? I'll just get them a bunch of and whatever, and they'll go on a little break and, you know, we'll give them some fidgets and, you know, it'll all work out. Well, guess what? Believe it or not, and science has proven it, kids grow up. Okay, so what happens to little Joey? You know, Joey might be 4, and everything is great. What happens when he's 10, 15, 20? Does Joey not deserve to be a part of this church anymore? Are we saying, sorry, Joey, we love you, but you grew up and now we don't know what to do with you? My son, for example, again, he's 18. 18. He's currently living. Again, I'm in the Chicago area. He's currently at a therapeutic day school in Wichita, Kansas. That's not a forever thing. He. His public high school here just wasn't a fit anymore, so we had to make a move for the time being. But when he was here, he went through about five churches in his life. So if you average that out, you know, and he left for the school a couple of years ago. So that's about a new church every, let's say, 3ish years. Okay, now, on the one hand, you might say, well, it's great. He at least half had a church, but why did we have to jump to five different ones? And that's not to say that these churches weren't good and that they didn't love and care for our family. But all of them got to a point where it was like, we can't do this anymore. And a lot of it had to do with the fact that he was just getting older. Even a lot of the volunteers would still prefer to just work with younger kids when they get older. It's like, okay, this is out of my wheelhouse. I'm not comfortable. I'm not sure what to do. And then what? What happens? The family suffers. But more importantly, that young person who's becoming an adult may not have a church home as they go into adulthood. And that is something that absolutely terrifies me and I think is something that concerns most special needs families and it should concern most churches in terms of that community aspect of what happens to these folks. Are they just disconnected from the faith because the church says, sorry, we don't have room for you. That's not okay. So we need to kind of be, you know, addressing that and looking it over again and saying, you know what, whatever we put in place has to be now, but also for the future. And maybe it starts with the little guys, but we should be intentionally moving towards how can we support these folks as they are growing up. And also folks who literally may just come, you know, through our doors as an adult. As much as we don't want to turn the family away with the young child, we don't want to turn an adult away either.
[00:20:39] Speaker B: Absolutely. And I think, you know, to that point, like the, you know, the church that I'm working with, I think it's also okay if you have a special needs adolescent in your church build for that child. You don't have to build, to your point, these wings yet.
I think ironically, over time these parents will build that wing, if that's what's needed. But initially it's about, to your point, it's philosophical buy in from the church. And I remember when I went and just emailed one person at the church and said, I want to discuss this. I walked in for a meeting that I thought was with one person and it was all of the church's higher ups. And I said, okay, they mean business. They really want to do this right. This isn't a, a one and done kind of thing.
[00:21:15] Speaker A: And I think that's also too, where when I'm approached by a church or when I meet with a church and they want to talk about getting trained, their default is going to be, well, can you train our volunteers or can you put, put a class together? I'm like, yeah, great, we can do all of that. Guess where we're going to start? We're going to train your leaders, right? Why? Because this needs to be in the DNA of the church. This is not okay. We're, we're going to just make a little room for these kids to, you know, go crazy in and whatever. The families are happy. This needs to be priority, starting at the top and saying, listen, your church has to embrace this. And, and now here's the other way that kind of unfolds because in disability ministry, by the way, there is this dynamic known as siloing, meaning most churches who have A disability ministry. Not all, but many have one. They have an environment, they have their volunteers, they have good people trained. But what's the unfortunate part of that? It's in a room, down the steps, in the basement. Close the door. See you later. Nobody knows you're there. Oh, you have a disability ministry. I didn't know that. I've never seen those folks because they're locked away. They have a place, but it's over there. They are not welcomed. And that's one of the other things too. In disability ministry we talk about something known as the five stages. And it's actually a friend of mine who's a disability ministry advocate who here from Chicago that created them years ago. Churches need to move from this idea of just being ignorant to do we even have these families here and if we do, what do we do with them? And then move to these stages of care, which are great because that's where you kind of put these programs together. And so it makes a way for families to be there. But those last stages are acceptance. Acceptance and what we call co laboring, meaning people with disabilities, youth, adults, not only have value, not only deserve a place, they have gifts, tools and talents too. Maybe they actually want to volunteer in your church. That's a crazy thought. But guess what? They can and they do. And you can encourage that in your church as well. But here's the thing. That's not going to happen if the message is not coming from the pulpit, from, from the front of the auditorium or, you know, whatever you got. And that leadership, that pastoral leadership saying, we're doing this, this is important to us. Let me tell you why. So that you don't get a bunch of folks with grumbles or weird looks or, well, what are these people doing here? Because unfortunately you do get that. And so if the leadership can communicate this to us and to our church family, then eventually the, the goal is that that will all kind of trickle down again into the DNA of the church and everybody will kind of be able to wrap their hearts and minds around it. Without that, it just becomes this isolated thing that no one knows about. No one, nobody really cares. And heaven forbid a person with a disability is in your congregation worshiping someday and oh my goodness, how'd they get in here? It's like, well, they're a part of the church.
[00:24:00] Speaker B: So part of what you do, part of. I know what our nonprofit Inspire does is we, we help get with churches so they. People can certainly reach out to you. So we'll talk at the end about where they can find you. Let's talk a little bit about your. Your. It's a book, right?
[00:24:12] Speaker A: Faith like my father. Yes.
[00:24:14] Speaker B: Okay, so talk a little bit about the book and what it's about.
[00:24:16] Speaker A: It is literally my memoir. It is my journey as a special needs dad. It's also my faith journey. So as I kind of mentioned in that story I told at the beginning, my faith journey and my journey as a special needs dad are very much intertwined because I really came to faith in that as a Christian. A short time after that experience I had. I was not a Christian yet. The. The church we attended was Unitarian, so. So the beliefs were not necessarily mainstream Christian. Again, the support just wasn't there. So we actually moved to a different church, and then that is kind of where it took off from there. But. But this journey, this memoir, really goes back to my own childhood and how my father raised me. That's actually where the title comes from. Now, if you hear that title, you might say you're doing dad must have been an incredible man of God. And I say, absolutely not. My father was a functional alcoholic. My dad drank every day and was drunk every day he worked. Which, of course, was my mom's way of saying, well, you know, your dad's not really an alcoholic because he goes to work every day. Well, you know, I've met plenty of functional alcoholics in my adulthood, let me tell you. But he was the guy who I really just always told myself, I'm learning what not to do. This is what you don't do as a husband. This is what you don't do as a father. But what's interesting is that my dad had this one piece of advice. Advice, and it was two words. Don't panic. Okay. He would just go on and on and rattle. Sober, drunk, whatever. He'd say, no matter what happens in life, you get stressed out. Things aren't going your way. Relax. Take a breath. Don't panic. Don't panic. Don't panic. And I remember thinking to myself how much I hated him growing up, because especially as I got older and I saw other guys with. With their dads or hearing these stories, and I'm like, I didn't have none of that. Where was this guy? All he told me was, don't pass panic. Well, I had an experience where I actually finally figured out what he was trying to tell me, and I didn't get it until that moment. And I had this total epiphany. And it's like, wow, the book is really kind of about not Panicking and really leaning into not only my faith foundation, but also community. Because, because those are the two things I, I really always hit on in terms of my speaking and presentations. I share my faith. That's important to me. Me, of course, you know, I realize not everyone is religious or Christian or spiritual, that's fine. But the other thing is community. You must have community. You can't do this alone. So the journey takes you through childhood and that experience with my dad, and then the early days, of course, of my, my child's birth, those early years of trying to figure out what this all was going through. Again, some of the things that I mentioned earlier in this interview and then things kind of coming together and then, oh, by the way, guess what? Even though my ex wife and I, we had kind of worked it out in terms of that, that time in life early on where we really struggled when my was very young, we still wound up getting divorced. And I didn't necessarily want it or expect it, but it still happened. And so I identified as a single dad for a few years until I found my new wife, who is a total blessing and incredible woman of God. And I am just very lucky to be with her and my son is very lucky to have her stepmom. But it takes you through all of these ups and downs. And again, I'm going to encourage people. When you hear this faith element, again, if you're not a person of faith, you will still connect to this story. Especially, especially as a parent of disability. I am very intentionally raw and transparent with a lot of these early experiences with the birth, hospital, doctors, therapists, diagnosis, all of it. And again, all, all of these things that you wrestle with as a parent and more specifically as a dad and as a guy. I think there's something in it for everybody. So I, I hope people will, will check it out. It's a little bit more of a long form of a lot of things I talk about in my interviews and presentations. You get more into the, the fine detail of it. I, I've been told it's a quick read. You know, the only negative that I've heard is some folks have said, I wish you would have spoken more to some things or gone into even more detail. I felt the book was great in terms of the length. It is, it's, it's enough, you know, for you to read on a long plane ride or a couple days at the beach kind of thing. So, you know, I hope people will pick it up, check it out, available everywhere where you get books and there's also a link on my website as well.
[00:28:08] Speaker B: And we will certainly be putting that in the show notes too. So you mentioned community. Let's just, just talk for a minute about community. What can the community do? What does an inclusive community look like?
[00:28:17] Speaker A: What I learned again early on was I didn't have it. So I either need to make it or I need to become a part of it. And, and I very successfully done both. But what you learn about community is that it's relationship building. And like any relationship, as, as a pastor once told me a long time ago, relationships are like bank accounts you have to put deposits in. Tough times come and they will. You need to be able to lean on people, but someone is not necessarily really going to support you if you haven't necessarily been there for them. And I'm not saying that some people wouldn't, but, you know, the fact is, is that, you know, you have to show that, hey, listen, I'm showing up here. I want to be in relationship with you. I care about you and your story. If there's anything I can do for you, small, big, let me know because you never know when you'll need that for yourself. So it's, it's not about being selfish with. I'm just going to go out there and collect all these resources, resources and things. And to be fair, I've been lucky and blessed to have been able to collect a lot of resources that have helped my son and family. But at the end of the day, it's really about kind of this service aspect. How can I serve you? To show you that I value you and to be perfectly honest, the true value of this community. Yes, the resources are great and the support has been great, but truthfully, it's these legitimate friendships that I have made with some incredible people that I never would have met if my child didn't have a disability. And not to make that all about me or anything, but the fact is, is that if I was never on this journey and I never felt the call and the motivation to try to build this intentional community, there are some incredible people I totally would have missed out on. And I can tell you there are some families, dads, guys that have really just made such a difference in my life. But let me speak to that second parking lot story, because I think this will perfectly illustrate the point. The second parking lot that I found myself in was on Black Friday. Friday, okay, the day after Thanksgiving in 2019. Now, I was not out shopping. I was parked in kind of a parking lot of this kind of like, retail area. But the reason why I was there was because about half an hour earlier, I was home, My son was out with a family friend and my wife, at the time, my son's mom, was out, presumably with some friends, came home and out of the blue presented me with divorce papers. You know, we weren't fighting. Nothing was happening. It was just, I don't love you anymore. Here you go. Go. And this is what's happening. I'm freaking out. I don't know what to do. Okay, now what? I'm like, I got to go in the car and I just got to go somewhere and clear my head. So I get in the car and again, I just drive like 10 minutes and I, I'm just sitting in this parking lot and I'm like, I have to start telling people because I, I need to figure out what I'm going to do. Here was the difference from 2019 to that first parking lot story seven years earlier.
Now, I had people to call. I had people who understood me. I had people who could support me. I, I had people who could help me. The first guy I literally called was a special needs attorney that I knew who was also a special needs dad and also had been divorced. So I'm like, you're the trifecta, buddy. So he was the first one I called. He was great. He was very direct with me, you know, like, look, man, I, I know this is bad. Unfortunately, your, your wife didn't just plan this yesterday. You need to protect yourself. You need to protect your relationship with your son. He actually gave me the attorney's information that he used, which actually was great. He was the perfect person. But, you know, I had pastors I could read out, reach out to. I had ministry people, disability ministry people, other dads, other, you know, church friends, or, you know, other personal friends. I had folks that were therapists, you know, even gift me, you know, free sessions kind of a thing to help me work through some things. So I had all of these people, all of this community now when I needed them. And honestly, when I look back on it, as hard as it was and as much as I didn't want it in the moment, when I think about how people showed up, it was a amazing. But again, that wasn't just because I was just the guy who needed help. I was a guy who intentionally made time for those people built into their lives, cared about them, show that, you know, I, I was interested in whatever they had going on, disability related or not. And when I needed that, they were there. And I'VE always appreciated it. And you know what? It really made all the difference in the world for me. And it definitely carried me on again, not just through those few years of, of identifying as a single dad, but really, it's because of my, my work in, in this world that I actually was able to meet my current wife because she was actually a longtime volunteer with, with the Johnny and Friends organization I mentioned that I worked for. So life has a way and, and God has a way of making these things work out. It's tough, it's tough on the hard days, but that's when you have to remember, as I had to learn the hard way, don't panic, because guess what, guess what? Hope is just around the corner. And these things can change very quickly.
[00:32:48] Speaker B: Wow. So, you know, you should be a national speaker. You're incredible. I love it.
You're definitely a fan practice. You have definitely found your calling. So I'm gonna ask you one last quick question, then we're gonna go back to where everyone can find you. It's something I ask everyone on my show. If a parent of a newly diagnosed child is listening, what's one piece of advice you would give them?
[00:33:09] Speaker A: My ex teacher brain. I always say it's number one little A. Number one little B. Again, number one little A for me is my faith. I'm nothing without my Christian faith. That is the foundation of who I am. If you are not a spiritual, religious person, Christian, whatever, okay. But one B is community. You must have community. You must have support. So especially if you have a young child, fresh diagnosis, and I, I get it. Life is chaotic, it's frantic, it's hard, and you're scared legitimately. I, we were scared. You know, I, I, I think everybody is scared in those early moments, but that's where you need go to community the most. As much as you might not be thinking about this is the priority, you have to find a place for it because you will not be able to manage your emotions, you won't be able to manage your anxiety or even your expectations for a lot of these things. You know, will my child be healed or not, or will this ever get better kind of a thing. Folks you know, who have been down this road can really guide you and support you. And if you reach out to me or if you connect with me either through my website or see some of the resources I'm connected to, there are a lot of wonderful organizations and ministries that support parents and support families and will walk alongside you. Also, very clear about this too. If someone is listening to this, especially a dad, but whatever. If you're listening to this and you're saying, well I don't have anybody and I don't know where to start, hey, reach out to me, that's fine. I'm more than happy to be, to be the person you connect with. I may pass you off to someone or something else but I will always, always make time for someone who just needs to connect and just have someone listen to, listen to their heart and say, hey, you know, this is where I'm at. Do you have an opinion? Do you have a perspective? You know, I probably do. But you know, the fact is, is that you should not do this alone. Get with somebody. You can start locally like I did, you could start small, connect with your school, community, church you can reach out to. There's a lot of great things, you know, online these days, virtual. That's a lot of the organizations I work with. There's a lot of in person things as well. But don't do it alone. You don't have to. You can't and you shouldn't.
[00:35:03] Speaker B: Okay, so they're not going to do it alone. Where can find you?
[00:35:06] Speaker A: I do have a website. It's just my name, john fella.com so john fella.com you can see hours and hours of podcasts just like these presentations, writing, etc links to books and all of those things. I will tell you that my webmaster is, has been working very hard to try to fix kind of a wonky contact thing on there. So you're free to try to contact me through there. But just in case, if you find me on social media you can always reach out to me. I'm on Facebook. Facebook. I have a couple of different accounts. My main account for my work is called John Special Needs Blog. John Special Needs Blog on Facebook. I'm on Instagram, I'm on LinkedIn, X alignable, all of it. Just punch my name in, you'll find me. And also out there you should be able to also just get my direct contact info. You know, you're always welcome to email me or even give me a call. That's totally fine as well. I absolutely encourage that. Would love to hear from anybody again, again, especially who is struggling and ways that we can just support somebody on their journey.
[00:36:01] Speaker B: Well John, this has been a true inspiration. I'm so grateful for you being a voice for the dads out there saying the hard things, being vulnerable and hopefully some dads that were listening feel a little less alone at this point. And for every listener right. I think the main message is don't do it alone. And if it starts with something as simple as reaching out to John John, thank you so much much for being here.
[00:36:23] Speaker A: Thank you again. It was great.
[00:36:24] Speaker B: If you need help or resources, whether you're a parent, someone on the spectrum, a business or a community organization who want to know more or need help or want to share resources, please reach out to us at Info.
[00:36:39] Speaker A: If you enjoyed this episode, be sure to follow us, leave a review and share with others who want to celebrate neurodiversity and until next time, keep shining.
