065 – John Felageller, Father of a Son With Autism, School Teacher, Blogger and Writer
On this Dad to Dad podcast, host David Hirsch talks with Special Father John Felageller, a 4th grade teacher and father of 11-year-old Christopher, who is autistic. John and his wife Elizabeth have been through some challenging times but have emerged stronger thanks in part to their involvement an evangelical christian church. That’s all on this Dad to Dad Podcast, presented by the Special Fathers Network.
Dad to Dad 65 – John Felageller, Father of a Son With Autism, School Teacher, Blogger and Writer
John Felageller: Being in the waiting room that they gave us and, and really just praying to God, whatever you need to take from me to heal him. I’m willing to give you whatever that is. You can have it all. If it means my son will be healed in that moment, it literally took me back to when we struggled the most as a family, I was willing to give everything up. But please just heal my child.
Tom Couch: That’s John Felageller, a fourth grade teacher and father of 11 year old Christopher who’s autistic John and his wife, Elizabeth have been through some challenging times, but have emerged stronger. Thanks in part to their involvement in an evangelical Christian Church.
We’ll hear the Felageller family story on this dad to dad podcast. Here’s our host David Hirsch.
David Hirsch: Hi, and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs presented by the Special Fathers Network.
Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process.
New fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads, to find out more, go to 21stcenturydads.com.
David Hirsch: And if your 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 this intriguing conversation between guests, John Felageller and David Hirsch.
David Hirsch: So I’m thrilled to be talking today with my friend, John Felageller of Northbrook, Illinois, a fourth grade teacher at Frazier prep Academy in Chicago and a father of a son with autism.
John, thank you for taking the time to do a podcast interview for the Special Fathers Network.
John Felageller: Thank you, David. I’m excited to be here.
David Hirsch: You and your wife, Elizabeth, who have been married for 15 years and other proud parents of Christopher who’s 11, who has autism. Let’s start with some background. Tell me, where did you grow up?
Tell me something about your family.
John Felageller: Well, I am a proud Chicago, native born and raised on the near West side of the city in what is technically called the Ukrainian village neighborhood or more specifically the East Ukrainian village neighborhood or East village. If you want to get technical, I am the product of a.
Very typical working class, blue collar, Eastern European, Chicago family, every little joke or funny quirk about Chicago wins you’ve ever heard or known from the funny way that they pronounce the words to the food, to every other idiosyncratic thing. It’s true. I will tell you, I grew up in a household very much like yeah.
My father was, I was a truck driver, so he was a blue collar guy. My mother worked as a secretary. Most of her life. She actually worked for the Chicago Tribune. The last 10 years of her working career. And I grew up, uh, as a child of the seventies in the eighties, very typically a city kid really just went to school, hung out at home.
This was still the time before a lot of technology. I still remember world without cable, TV, and video games and all that. We had a little bit of that, but not much. And really, I just did school, hung out, played with friends, did a little sports, but life, I would tell you what was pretty simple and, and the message was pretty simple.
It was, you go to school, you grow up, you get a job. There really weren’t a lot of crazy aspirations to be. A doctor, a lawyer or a scientist, it was get a good job, be able to provide for your family, be a good husband. And that, and that was pretty much the message I got.
David Hirsch: Okay. Did you have any siblings growing up?
John Felageller: No, actually, as I like to famously say, our family is a family of only one child, so it was my wife. And so it was my son, which people have told us. It’s very rare that only children marry. If, if never. And then certainly having an only child themselves, but certainly due to our circumstances, that’s just how it works.
David Hirsch: That’s interesting. So you said your dad was a truck driver, and I’m wondering, how would you describe your relationship with your
John Felageller: dad? So to begin with, I’m actually going to echo the words of a former podcast, dad, Chicago sports radio legend, Dan McNeil. When he was asked that question by you, he said, quote, my father did the best he could.
And that really was my father as well. My father was not the kind of put his arm around you, coach you up, love you up kind of a guy. He was very rough around the edges. He was actually very intelligent. He loved to at least share his wisdom. He had no problem letting you sit and listen to the things he knew and the things that he had to say.
The word that I like to use sometimes as positive. But to be honest, one is a lot of the things that I got from my father were the things not to do. You know, my father had a drinking problem, for example, I really didn’t understand that it really didn’t make sense to me until I was an adult. And I met other adults with drinking problems.
My mother would always kind of pass it off and say, well, yes, your dad drinks a lot, but he goes to work every day. And then of course, I’ve met people with high corporate jobs who said, Oh yes, I go to work everyday too. And I bring a flask with me for lunch. I experienced a lot of things that I knew personally.
I wanted to change as an adult, that when I was a dad, when I was a father, these are the things that I would do differently. These are the things that I saw that didn’t work. And, and, uh, quite frankly, I had a lot of trauma in my childhood seeing some of the different interactions that my parents had some times and some of the fights and arguments and that type of thing.
And I just said, I don’t want that for myself. And I don’t want that for my family. So I, that really struck me. And I always carried that and I always did my best to, to really in a lot of respects, just not be my father. But at the same time, there were some valuable things I did get from him. One thing in particular, and maybe we can, we can get to that later.
David Hirsch: Well, that’s interesting. Um, that’s something else we have in common. There’s things you, you want to emulate, right? The things you want to be more like somebody, and then there’s the lessons you learned and things you don’t want to do. I’m not going to do that. You know, when I’m in that situation and whether it’s drinking or whatever the situation might be.
And I think about it as trying to emulate the good characteristics and live vicariously through the called a bad characteristics or things you’d just assume learned vicariously. So thanks for sharing. Um, but when you think about your dad and by the way, as he is still alive,
John Felageller: he’s not, he passed away from a stroke.
Um, actually on new year’s day of 1999, uh,
David Hirsch: was a long time ago. Yeah.
John Felageller: Yeah. So it’s been a while. He actually, he suffered the stroke a few months prior, uh, was hospitalized and, and just never came home.
David Hirsch: Sorry to hear that. But was there another lesson or two that you learned from your dad? Something that you’d say, Oh, that’s a, that was an important takeaway.
John Felageller: Well, I think I’ve learned in life and it’s come from my father. And also from a couple of guys that I’ve met over the years, if there’s one thing I’ve learned, it’s fad, usually the best advice, the most profound advice is usually the simplest. And in my father’s case, he gave me something very powerful and I didn’t realize how powerful it was until later on in life.
But. He had a phrase. He had a tagline that he always used, and it was two words. Don’t panic. He was the kind of a guy that you never wanted to go to the movies with because the first thing he would do when you would sit down and say, look for your emergency exits. If there’s fire, if there’s some kind of an emergency, where do you go?
What do you do? It drove you crazy. Then he always hammered it home to me, no matter what’s going on, no matter what’s happening, don’t panic. Get calm, assess your situation. And I can tell you that as a kid and as a young adult, That made me extremely frustrated because as I became older and as I saw the relationships that other friends had with their parents and, and especially then as I grew up and became a father myself, and really just had this bigger perspective, I think to myself, what did he really give me?
What did he really do for me? Other than just telling me don’t panic. I really didn’t see any point in that, in that phrase. And, and I did have an interesting experience with that and we can save, save that for later, share it now, whatever you feel like. But one, one thing, again, that has really kind of been pressed into me is that good advice doesn’t have to be a book long.
Good advice can be one life that you understand. And you comprehend that you apply to your life and you use it well.
David Hirsch: Excellent. So my recollection was that you went to national Louis university. You have an ma and elementary education when you graduated. What was it that you were focused on? Where did you think your career was going to take him?
John Felageller: Well, it’s kind of funny when I was an undergrad, my goal was to be a high school, social studies teacher that was originally my goal in life. And then as it turned out, my first teaching job was actually back in my old element. and that’s where I realized I actually liked a little kid. So, um, I had worked prior to getting my masters in my certification, working with elementary.
I’d worked at some private school settings and then. Went back to grad school, got all of those papers and then really looked for just a typical old elementary school teaching job, which unfortunately is a little bit challenging to find. It’s it’s really a flooded job market. It has been for many years, and even with having some years of experience.
And what’s interesting, David, is that when I graduated, um, I really felt that I had. Everything I needed to really just find that one job I would be at for 20 years or 30 years and just kind of settling. My wife is also a school teacher. She’s been a middle school teacher now at the same school, in the same district for over 15 years now, herself.
So I thought that would just be me. And as it turned out, it wasn’t because I didn’t quite land that job. I actually went back working for private schools for a time and doing some different, serving some different roles, classroom roles, even administrator roles. In fact, But because of the instant ability of my career, that actually led to some issues in our family, partially related to the situation with our son’s diagnosis.
And, um, it just kind of bled into just a lot of cracks opening in the relationship and the family and the marriage. And as it turned out, it, that would have been serious enough on its own. But it’s just fascinating how, when you were special needs parents, one crack leads to many, and then those cracks quickly become a Canyon.
David Hirsch: Okay, well, thank you for being so transparent. I’m sort of curious to know how did you and Elizabeth meet
John Felageller: funny story? So back in the spring of 2002, I got invited to a home in Highland park by a close friend. Uh, there was something there called the drum circle. Now, if you don’t know what that is, or that sounds kind of little Kippy shit, I guess it is, uh, essentially what it is is it’s a group of people from all walks of life.
And it was just a reason for people to get together, play instruments, uh, really more percussion, hand drum type of things, and people get together. And it’s kind of like a cocktail she’ll party, but without the alcohol, but you definitely met a lot of interesting folks and, and you really met a lot of people who were really using their creativity to do a number of things in life.
So it was really a fascinating group. And it was there that in the dining room of that house, that I looked across the table and saw a young, attractive blonde hair girl wearing a tie dyed outfit, stuffing a spinach wrap into her mouth. And I’m going to be embarrassing her a little bit, but yeah, that’s what I remember seeing.
And, uh, and it was that moment as they say that you knew. Yeah, you knew then that that was the one you were going to be with. And I don’t think she knew it because we wound up talking. Uh, she shared her email with me, which she kind of sloppily wrote up a little note card and the email didn’t work when I tried it because I couldn’t really read it.
And I didn’t see her for about six months and then interesting. Emily enough, I went back to the same event in the winter. My friend told me, Hey, that thing is going on again. If you want to go. I went reconnected with her and then we actually started talking and then a couple months later we were dating
David Hirsch: and the rest is history.
That’s awesome. Well, thanks for sharing.
Well, let’s switch gears and talk about special needs first on a personal level and then beyond. So before Christopher’s diagnosis, did you or Elizabeth have any connection to the special needs community?
John Felageller: We did not quite honestly, it, it really, I think was more of a mystery to us. I think our real, only real awareness was being teachers and, and being in a school environment, you know, of course you have a special ed classroom, you have special ed students, you have students with visible disabilities, kids in wheelchairs, that type of thing.
But that really isn’t your, uh, it’s not your experience. It’s not your training. It’s not something you really pay attention to. And of course, as a new parent, You have all of the good intentions in the world that your child is going to be just fine and there will be no problems and we will do everything right.
And in some ways I think maybe we put a little bit too much pressure on ourselves as I think most parents do. Um, and I think there were a lot of expectations from friends and family that this is going to be great. And you guys will be great parents and no problem.
David Hirsch: What was it like then when you learned about Christopher’s diagnosis, how old was he?
How did that transpire.
John Felageller: Well, we had a couple of minor concerns, but we didn’t think it was anything too serious. But when we went for his 18 month checkup and generally speaking, that’s where these things really come on the table and we went to his pediatrician and she asked us point blank, a very simple question, but very telling is he speaking?
And we had to admit, well, he’s not really speaking. And at 18 months, the expectation is that the kids will be able to utter some basic sounds, possibly some words, string some things together. And we said, now we’re getting some random occurrences of things, but nothing really intelligible. And she said, well, and I remember these words very clearly.
She said, what do you want to do is take your child across the street to the professional building. And you want to make an appointment? Well, their speech therapist and her literal words that I will never forget where. I don’t know what they do, but they play with your child and make them talk. So go over there and everything should be fine.
So we said, okay, not knowing any better. Let’s do that while we did that. And as it turned out, the speech therapist didn’t fix it. And then there was a suggestion, get his hearing tested, which we did. And they have ways to test kids here. And even at that age, and even if they’re not communicating and they said, no, the hearing is fine.
There might be something else here. So then we got him into, um, what’s known as EDI, early intervention services in the state of Illinois. They really didn’t have answers for us. And then by the time he was around. Uh, I would tell you that he was probably three and a half. We saw a neuro site that was referred to me by some other families at the school I was at at the time.
And, uh, she diagnosed him with at the time, what was called PDD nos, pervasive developmental disorder, not otherwise specified, which essentially now just falls under the autism umbrella. So now we would just say he’s autism spectrum disorder.
David Hirsch: looking back on that experience, the 18 month checkup, you know, is he talking or not?
And then the next 18 months, or maybe two years until the diagnosis was actually made, which was PDD at nine O us knowing everything, you know, now, would you have done anything differently? Is there any advice that you could give to other parents, other dads for that matter? You know, if their child is sort of tracking, you know, the same path that Christopher was on,
John Felageller: I would say that first of all, what you want to know is that.
One person can’t always give you the one answer you’re looking for. I would really encourage you to get a second opinion on anything just because, but also too, you want to start gathering as much information as possible talking to as much people as possible, networking as much as possible. The intention is not to make you crazy because you can very easily go crazy because there is a lot of information out there.
Which is a good thing. And there are a lot of people that you can connect with, which is also good, but you can get too many voices and then difficult to kind of filter through what really is true or not for your child. But I would really encourage that if you have any concerns earlier is always better looking back.
I don’t know that there’s anything we could have done more or differently based on what we knew. I think we certainly know more about who he is, but that’s also part of the equation too. Him and the puzzle really is that you really, you don’t know how your child will present with some of these things until you’re maybe five, six, seven years down the road.
Some things may actually get better on their own. Some may not, or some may get worse. And that’s the tricky thing with autism is that if you know your child say has, you know, cerebral palsy, well, that’s a firm diagnosis. If your child has downs, that’s a firm diagnosis. Your child can be autistic and look perfectly normal.
Many days, your child can be autistic in the case of mine. I mean, as soon as they walk in the room, you know, he has something cause it’s very obvious with his actions and mannerisms, but I will tell you get as much information as you can talk to as many people as you can. You don’t want to doubt what your doctors or specialists are saying, but you want to get a clear picture.
She had a
David Hirsch: confirmation for what it is and err, on the side of engaging, as opposed to we’ll just cross that bridge when we get there mentality.
John Felageller: Right.
David Hirsch: I’m wondering if there’s any meaningful, meaningful advice that you received early on that you look back and say that was instrumental to developing the path that we’re on.
John Felageller: We did have someone who was a very good therapist for Chris early on. And again, probably sometime around when we got this diagnosis, she was speech therapist and she was great because what she pinpointed with him was that. He’s not traditionally or what you might consider presenting as classically autistic.
He’s a practic. No Praxia is essentially a, what they refer to motor disorders or motor dysfunction. So in other words, a fine motor skills are impaired or are not progressing, you know, in terms of normal growth in his case, for example, My son is classically nonverbal. Now that doesn’t mean he doesn’t make a noise or doesn’t have some language.
But the problem is is that when people have worked with them and especially this particular therapist, you could see that she’s trying, there is clear intention on his part to communicate the language. His, body’s not letting him do it. And given the right environment and circumstances. Yes, you will get some clear speech.
And sometimes it’s funny because when we have least expected it, a clear phrase or clear word or something just comes out and we have to all stop and turn around and say, did he say, and
David Hirsch: it’s in context?
John Felageller: Yes, he has very much said things in context. I’ll just tell you one quick example of this we attended and I’m sure we’ll get into this a little bit more later, but we attended.
Family retreat under the Johnny and friends organization, who of course were, we’re both friends with John Ebersol from there. And, uh, the first year we attended, every child gets a one-on-one to be with them the entire way. So the families can get a break. And even though my child was at that point, you know, around the age of five, he was still.
Just constant movement and you needed to always be active with them. And the one-on-one that was with him was a woman that was probably, you know, middle-aged and in good shape. But I think it had, you know, some physical, um, yeah. And, and she was but concerned and, um, they were hanging out. There’s a, um, Main building at the retreat center and there’s kind of a common area and they were hanging out on some couches and there was another woman was talking to my son’s aid and she was just kind of, you know, looking at the situation, reflecting on.
And she told the woman, she said, well, you know, I’m really going to be praying for you this week that you have the strength to keep up with him. And all of a sudden, out of nowhere, my son said, amen, God. And they both kind of stopped and looked and said, you said, what? So he understood the conversation. He heard what they were talking about here.
She knew that they were talking about him and he responded appropriately. So, or as appropriately as you can, I guess so. So that was really fascinating. Um, the fact that we now know that he, you’re not going to sit down and have a full conversation with him. But he’s listening to everything and he’s taking in everything and he’s remembering everything.
So we, we have to also then be conscious about what we’re saying, how we’re speaking about him. You know, we’ve kind of learned the trick to tell him we’re talking about you. We acknowledge you’re here. We know you’re in the room, kind of a thing, or even those more serious conversations have with them in a way, because, you know, we can’t do it well, he’s just not hearing us.
We know he’s hearing us and we have to be a little bit. More general with some of our phrasing. So,
David Hirsch: yeah. Well, that’s fascinating. Thank you for sharing and what a blessing it was to get that call it additional diagnosis about practic is that,
John Felageller: uh, you can say a practice or that he’s a practicum. Okay.
David Hirsch: What were some of the more important decisions that you’ve made as parents raising a child with special needs along the
John Felageller: way?
I think it affects a family on all levels. Here is probably the deepest and most profound thing that we’ve had to face as parents in terms of raising him and kind of planning for him is that when you have a child with special needs, you don’t plan for the next grade level necessarily, or high school, or how are we going to pay for college?
You literally have to plan for the rest of his life at some point. Mom, dad, grandma, auntie, whoever that’s around him, that’s in his environment will not be there either. Physically will not be here. We will pass on someday or physically. We just can’t keep up with you. And we don’t know what you will look like at 20 or 30, you will probably be bigger than you are now.
Stronger, faster, et cetera. 70 or 80 year old dad can’t do these types of things. So certainly one thing we have to look at is how do we care for him? The other tricky thing is, is that with many special needs families that have siblings, the conversation is had at some point in those families. And I know many of them where they say, okay, sister, brother, however many there are, we’re gone.
It’s up to you guys. Let’s make a plan for who was going to be the caretaker who was going to manage his care state, et cetera. We don’t have that because we’re only kids and we have extended family, but they’re either far away geographically, or we just don’t have that close relationship. So you have to plan for, okay, how will we pay for care when he’s 50 and.
You know, we ourselves are on, you know, Medicare or, you know, whatever in terms of longterm care insurance or needing that. So we’ve had to have the conversations with people like Brian Rubin, for example, who were, um, you know, both acquainted with and, uh, do a special needs trust because all of the assets and, and thankfully, um, in terms of my wife’s side of the family, my mother in law, specifically, who has been very supportive of us and very involved in, in us every step of the way.
So I really have to commend her on her role. In our lives and in the life of her grandchild, but all of the assets, uh, from the family essentially we’ll go to him. But of course that has to be protected. So we did have that conversation about the trust. We have looked at organizations say like Clearbrook or Misericordia in terms of where mighty goal.
Um, we would love for him to stay in our community in Northbrook. And there are different ways you can do that in terms of a sellout or a group home type of thing. But there are limitations with that as well. And of course you have to see is that really. The best fit for him. And ultimately it comes down to, again, someday we will not be here to make sure these decisions.
We have to make sure we have the right people in place to make those decisions, but the resources are there. The assets are there, but also the right people are in place to really facilitate all of that. And so if you’re a special needs parent and. You know, maybe, you know, you’re still very early on in the game, but if you think that this could be something longer term or more serious, it’s not too early to start thinking about 30, 40, 50 years down the road.
You may not have it all planned out. We don’t, a lot of people make changes along the way, certainly, but it’s not too soon to start having those conversations about what might it look like? What can we do what’s possible and then seeking out those resources professionals.
David Hirsch: Okay. Well, thanks for sharing.
You don’t want to get too far ahead, but you do have to plan because things happen and hopefully not for decades and decades, but, um, maybe it gives you some peace of mind to know that you’ve buttoned up some of those bigger picture issues so that you can be focused on the here and now to be present and not Rob yourself of all the things that are going on today, as opposed to.
I don’t want to think of it negatively, but prewiring your worries, right? Cause there’s a lot of things to worry about in life, but, uh, thank you again for sharing and not to focus on the negative, but I’m wondering what if some, some of the bigger challenges that you and Elizabeth have encountered?
John Felageller: I would say that biggest challenges have really been in terms of how we personally have shown up in the family and in the marriage.
One thing that I will say absolutely. And that I kind of hinted at earlier. Is the fact that when you have a special needs child, all of the issues that you have personally in your marriage, uh, career wise, financially, et cetera, all of those get exacerbated, small problems become big problems and big problems can seem insurmountable very quickly.
I kind of hinted at some of the things that were also going on in terms of at the same time as his diagnosis. And as those things were progressing, we definitely had financial issues. We had a little bit of a back and forth with insurance. We’ve actually had great insurance coverage over the years for the most part that has really covered most of his therapies.
Uh, but we actually did have a lag because of my work situation. And my wife took off for a time when he was born. So initially we didn’t have great coverage. So we were paying for a lot of things out of pocket, regardless that we were getting some things from the state, um, as well as the fact that. When you have a special needs child, if you’re looking to do anything extra, if you want to try something with, you know, maybe something that’s either amount of pocket, not traditionally covered, you know, your money goes quickly and you spend money quickly.
You spend money quickly when you have kids, but it’s even more so when you have a situation like that. And so we found out. A couple of years in that we also were struggling, not just financially, but then that put pressure on our marriage that forced a lot of infighting and just the two of us kind of grading against each other.
Uh, you also get exhausted very quickly, especially when you have a child like ours, because he really needs 24 seven care with toileting, with feeding, et cetera. So at that time, These things started to kind of grow exacerbate, put a strain on the marriage. And it literally got to a point where in 2011, I was laid off from a job.
And that really put us in a financial hole. My wife, although she was working, felt a lot of pressure to kind of carry the family while I figured things out on my end. At the same time we were dealing with all of my son’s issues and we were still trying to figure a lot of things out and he really wasn’t in.
The place he is now in terms of a firm educational setting, we were doing some private schools that really weren’t meeting his needs. He was doing a lot of therapy, but the therapies, again, we’re still kind of hit and miss. And we really got to a point in 2012 where everything kind of imploded and I’ll say imploded because literally the bottom fell out financially.
We were struggling greatly in terms of our marriage. We were kind of at our wit’s end, there were friends around us who were married. Several of them were actually in the process of either separating or getting divorced. So there was an environment around us which was really leading to, well, if our marriage isn’t working yours probably isn’t either.
And so whatever. Uh, so we didn’t have a lot of support around us. We didn’t have people speaking into our life. We didn’t really know any other special needs families that we were close with. We couldn’t dialogue any of this with anyone. We weren’t seeing a counselor. So
David Hirsch: you’re in the cave if you will.
John Felageller: Absolutely. Absolutely. And. It got to a point. And I know we touched on this, uh, personally earlier, but I got to a point where I really felt as though I could not see a way out of this. And one of the conversations my wife and I started to have was that it looked like, Oh, separation might be best. Uh, she certainly didn’t kick me out of the house, but she gave me some, uh, I’m gonna use the word deadlines in terms of look you.
You need to have work. You know, we need to fix this. You need to be doing this or else we’re, we’re done essentially. I didn’t see a way out. And it got to the point probably by the spring of 2012 that I’ve ever really recall. I sat down in front of my computer and I wrote three letters and I wrote a letter to my wife, to my son and to my mother.
And all three of them were suicidal. Oh my God. Okay. And to be clear, I never tried anything. I never attempted anything, but I was in a place that I did not see any way out of. There was no magic fix to it. Even if I landed a great job, making a lot of money that wasn’t necessarily fixing our marriage at the same time, I still felt a lot of insecurity.
A lot of defeats, a lot of loss because I wasn’t the guy. Who I wanted to be. I wasn’t the man I wanted to be, I wasn’t the father, I wasn’t the husband. I want it to be, and I really didn’t have anybody in my corner. So luckily it never got to that. And thankfully people did start to show up. We can get into, but the bottom line is for me at that point.
Because I had no support because I had nobody speaking into my life because I had nobody there to lean on and I did have a couple of friends I could reach out to, but they really had no idea. And in fact, I had one close friend who literally told me if it were me, I would, I would leave because I don’t even know how you’re going to fix this.
And in some ways, as I related it to him, he felt in some ways that some of this wasn’t even fair to me, but I said, I’m not leaving my family. I’m going to figure it out and we’ll see how it goes.
David Hirsch: Wow. Well, thank you for being so transparent. Um, I’m wondering, what was the turning point? What, what was it that helped you get from that low point to a safer ground and then beyond?
John Felageller: Well, I, I, this is where I unabashedly refer to my faith and I will tell you this, that. I’ve always been a spiritual person per se. I’ve always had a strong, deep belief in God, but that has looked differently over the years. I was raised Catholic. I kind of abandoned that when I was a teenager, because I felt it wasn’t for me.
Um, I explored a lot of different things through my life, a lot of different philosophies and traditions and all that kind of thing got into meditation and yoga and, and whatnot, and a lot more of the new age type thing. But I really didn’t have a foundation. I didn’t have a faith. I didn’t have anything to lean on.
We did not belong to a church. We actually briefly joined a Unitarian church because my wife’s background is Jewish. And again, mine is Catholic and really the Unitarians kind of welcome anybody. It is a branch of Christianity, but it is very open and liberal and, uh, and that was great. But the problem is, is that the community really wasn’t what we needed it to be.
So, what I didn’t realize though, is that my wife had been talking to a close friend of hers at work who was a Christian belonged to a church. And my wife was kind of watching her and kind of how her and her husband interacted and said, well, do you have a men’s group at your church? Because I think it would really help him out because, you know, I, I’m not really having too many issues myself, but I think he could use it.
So I said at that point, I’m willing to try anything. No problem. So I wound up going to. Her friend’s church, which was an evangelical Christian Church in Libertyville. I went to the men’s group there one night and it changed me forever, mainly because I saw guys that were total strangers that didn’t know me from anyone and just walked in the door, embracing me, listening to me and legitimately asking, not only how are you doing, but also how can we help?
Is there something we can do? Is there something you need. And that struck a chord with me so deeply because on the one hand, it really started me on my faith journey as a Christian, but also it reminded me how much we need other people in our lives. And specifically as a man, how much I needed other guy.
So as a guy, as I’ve shared who you are now, I have a strong father figure in my life, really at all, up until that point. All of a sudden, I saw that I had guys were willing to be friends, brothers, and some of their older men there that were really willing to mentor me. And I came away from that noticeably different.
And my wife noticed that and I told her, I think I like this. And I think I’m going to keep going. And I kept doing that. And eventually we started attending the church and eventually we both became Christians and, uh, that helped to create an environment where our marriage started to get repaired. Now I will say we did see counseling.
We did seek an excellent counselor that was actually recommended by also a friend of my wife’s. And so with the more pragmatic approach of the one-on-one marital counseling, but also the environment we were starting to create in terms of people who, regardless of how long they knew us cared enough to say whatever your needs are, whatever you need to share, we’re willing to be here, listen, help you out.
And that then helped us on the road to repair. So, yeah. You know, my advice there, the wisdom I took from that experience up until that point, at least is this that you cannot do this by yourself. It’s great to have a faith community. You may not be a religious or a spiritual person. You need a community without a community.
You will suffer. You will fall. Communities don’t want, they have to be large. They don’t have to meet in one particular place or a big building, but you need a community, whatever that looks like for you, a network. Someone you can lean on whether that’s 10 guys in a room, one person you meet for a coffee or a beer sometime you cannot do this alone.
I learned it the hard way. Luckily I got out of it, but I got out of it because really good people showed up at the right time and spoke into my life.
David Hirsch: Wow. Thank you for sharing. I don’t know that you would refer to it as a God’s siding, but a, it strikes me as being such. Now that these men that you got plugged into with that men’s group that really have transformed your life?
John Felageller: Absolutely. Absolutely. And I also took from that a deeper, more profound lesson, which is that as was done for you do for another. So I have, because of my experience, I have always been willing to reach out connect. With any guy, wherever they’re at specifically special needs dads, but regardless, um, I have certainly made those relationships with the guys who are dealing with other issues in their family.
Marriage would have you, uh, because I know what it meant for me. And sometimes again, it doesn’t have to be a big wow event. Um, I think for me on some level it was personally, but sometimes it only takes one guy only takes one guy, one conversation. In my case, it took that one night with that group of guys.
And it was enough. It was enough to get me through it.
David Hirsch: Well, thank you again for sharing. One of the questions I asked you earlier, John was what are some of the bigger challenges that you’ve had and maybe this might be an opportunity for you to share what that, what medical crisis or emergency was that you had to address this past year?
John Felageller: So, um, back in March, uh, it was a Saturday and interestingly enough, I was on the phone with our mutual friend, John Ebersol. And as soon as I got off the phone with him, I got a phone call from my wife and she was bringing my son back from his therapy in Vernon Hills. And she said, listen, uh, he threw up in the car.
I need you to be ready so that you can help clean them up. Now, when I first heard that there was no issue at all, because it’s something that’s happened before. Sometimes like any kid that somebody gets upset and maybe he ate too much. Okay. No problem. When I got to the car, I opened the back door where his seat is and.
Essentially, I was looking at a stroke victim because eyes were glazed back. Uh, his head was tilted back. He had vomit rolling down his face. He was unresponsive. I pulled them out of the car. He basically collapsed in my arms, so he couldn’t stand or walk. We brought him into the house, uh, tried to take him to the bathroom, to clean him up.
He became incontinent, uh, and essentially just lost complete control of his body. And he essentially was having a what’s referred to, I know what it has a different term now, but essentially it’s a grand mal seizure. So we debated, um, if we should just rush him to the hospital or call the ambulance, we decided to call the ambulance, which is actually a good thing because once they stabilized him in the ambulance, he had two more seizures on route to the hospital.
We get them to the hospital and, uh, you know, first glances, he swept up to a bunch of, uh, tubes and sensors and that type of thing. And we decided to make a plan. Now, uh, one of the first conversations they had with us was because that, uh, they took him to the Glenbrook hospital in Glenview. When they said, because we’re not a pediatric hospital, we’re going to send him either to Evanston or to park Ridge.
And we prefer advocate Lutheran in park Ridge because he had had some procedures done there before. So we said, let’s get them ready for transport there. In the meantime I got in the car, went home, started to pack some things up and it was on route that I’m getting a variety of texts and it’s the messages and it’s kind of thing from people what’s going on.
And my wife texted me back that he has something called the Chiari malformation. C H a R I and I say yes myself. Oh no, he’s got a brain tumor. Cause I’d never heard of that. I don’t know what it is. And it really sounds scary. And then I punch it into the Google and it tells me that it is a malformation of the brain in which essentially a brain matter or fluid pockets at the base of the skull on the top of the spine.
Creates a great amount of pressure that relates to a variety of things, mainly headaches, but also a loss or a disruption of motor of proper motor function. And as I read into it, I said, huh, the therapist years ago, who talked about the Praxia, might’ve been onto something because these are all the things that he suffers from.
And it’s all apparently related to this malformation, which we never knew about. So they did some further scans. They transport them to the hospital. So advocate in park Ridge. Uh, we met with a neurosurgeon and he explained that, yes, this is what he has. It is correctable. He will have to have brain surgery, uh, the sooner, the better, et cetera.
We got him on some seizure meds to control the seizures until that time. And then we took him to the hospital. April 15th had the surgery. I will tell you that as a parent, it was probably the scariest day of my life. Scary, not just because of the degree of the surgery he was having, but. My son literally was shaking in my arms, taking him into the hospital because he knew he, he knew on some level to whatever degree he understood.
This is serious and I’m scared. And it’s the hardest thing as a parent to hold your child. When they’re shaking like a leaf and telling him it’s going to be okay, when you realize what’s about to happen to them. And we finally got them relaxed and sedated, and then they put them on the card and they have his iPad playing his favorite music to Sue them and a blanket and everything.
And they wheel them off and eat as much, which is I knew he was in good hands. My heartache form. And, and the tears were still present because first of all, I didn’t know. My assumption was, yes, this will fix things, but I don’t know. And I don’t know to what extent things will be fixed. I don’t know what my child will be when he comes out of this.
There were still just a lot of uncertainty and anxiety on my part. And I just remember how challenging of a morning that was in terms of just being in the waiting room that they gave us and just praying and spending some of that introspective time and really just praying to God, whatever you need to take from me to heal him.
I’m willing to give you whatever that is. If there is any special blessing or grace that you have for me, or have given me or plan to give to me, you can have it all. If it means my son will be healed. And I think any parent would be willing to give anything to heal their child. But in that moment, it literally took me back to, you know, when we struggled the most as a family, when I felt I had nothing, I was willing to give everything up, but please just heal my child.
Let’s please just get him through this. And luckily he made it through the surgery. Surgery was great. He’s recovered. He’s recovering well. And although he has few limitations, We are seeing improvement, um, in some areas, which, which is a wonderful thing. But when you have medical issues, you know, a lot of families that have, uh, kids on the autism spectrum, you don’t always have medical emergencies to the group, to the degree that we do.
You don’t always have to live in that state of, uh, crisis medically for your child. You don’t always have to worry is my child going to get into this seizure and not come out of it as much. I’m going to go into the surgery, not wake up. We walked through that. We were able to get through it, but again, This time when we did it, we had a lot of support.
We had a lot of friends lifting us up. We had a network and a community around us that spoken to us that checked on us that visited us. And I think this time you could see the clear difference in that when you have those people in your life, being able to walk with you in those hardest times, regardless of the fact that it all turned out okay.
This time without them there, it just wouldn’t have been as easy. So we thank God
David Hirsch: him. Yeah. Well, thank you for sharing that as a. Powerful story and I’m emotional, right? It just seems like an emotional roller coaster that your whole family is on. And thankfully that you did have people around you to help buffer that experience.
And what came to mind is something we talked about earlier about this table you had, from your experience with your dad, about the two words don’t panic. Did that seem to resonate at the time? Did that help or was that not part of the
John Felageller: situation? I will tell you that I finally figured out what those two words were about.
And I’ll tell you a story of something that happened to me back in 2013. This was still when we were kind of figuring things out and still on the road to recovery in terms of some of the issues we had had, but we were in a pretty good place. Our counselor had told me about a guy that was coming to speak at her church.
Christchurch and like forest, a man named bill Farrell, bill wrote a book years ago called point man. And I went by myself, didn’t know anybody, but just sat there and listened. And he was a really fun guy to listen to a very much a football coach, kind of a mentality kind of in your face, really challenging guys, encouraging them, all that.
And on the Friday night he was preaching on something from Matthew chapter five, which essentially is the part of, of the gospel where Jesus is saying do not. Fear for your life. Consider the birds of the air. They’re taken care of, you know, consider the flowers, how they’re taken care of. You have nothing to worry about essentially.
And these kinds of going on and on, and I’m unpacking this and I’m sitting, listening. And then after maybe 10 minutes of this, he stops any point bank blankly stares at everyone and says, now guys, look, what’s Jesus really saying here, I’ll tell you what he’s saying. It’s two words. Don’t panic. And I sat there and I said, sat back in my chair.
And I said, you got to be kidding me because all these years after everything that we had just experienced and we’re still really wrestling with, I finally got the message about what those two words were. And in the car, driving home that night with tears in my eyes, I finally forgave my father. I thought I had forgiven him in the past with all the counseling work that we had done and some other things I had done in the past as well.
But I really forgave him then because I got that, no matter what he meant in the past, all the things that he didn’t do, all the things that I wished he would have done or said, he essentially gave me everything I needed. It was just two words. Don’t panic. It was stay calm. You’re going through a crisis.
It will be okay. But if you lose control, nothing’s going to get better. So don’t panic. That has resonated with me since then. And I’ve always remembered the true meaning of those words and applied them and said, okay, get calm. We’ll get through this. Don’t panic.
David Hirsch: Wow. Very powerful story. Thank you for sharing.
And I think you said it I’ll just paraphrase. The other implication of don’t panic is don’t lose control, right? Try to be present. Um, yeah, I think you can’t change the past, so you don’t want to worry about that. And if you get too far ahead of yourself, you know, you’re just going to lose control. So you just have to be.
In the, in the moment and try to, um, stay focused.
John Felageller: Absolutely.
David Hirsch: So, thanks for sharing. I’m wondering if there’s been any supporting organizations that, uh, you’ve relied on, uh, that have been a good help to Christa for special Olympics or things like that.
John Felageller: We’ve gotten involved with a variety of organizations.
I will tell you first because we, I had referred to it previously, but Johnny and friends has been a wonderful. Support organization for us now that really more supports in terms of the family, because of their family retreats and type of thing. And if you’re not familiar with them, I strongly suggest you check them out online.
Johnny, Joe and I and friends. Um, especially if you’re looking for great ways to connect as a family, they have wonderful resources for that. We’ve gotten him involved more recently in terms of more of a therapy background, I guess you could say. The sort of with special Olympics, he actually is involved with two programs, one at the Northbrook YMCA with a wonderful man named Tom March.
Tom March is actually a swimming coach for special Olympics. And Christopher has done private lessons with him now for over a year. And he’s wonderful. As a matter of fact, as we’re recording this, he’s actually at YMCA camp. This week and Tom is actually his one buddy. So that’s been great for us too. Uh, so we we’ve had that relationship.
We’ve also met with, um, a wonderful man named Jeff Cohn in Glen view, North shore dojo. If you don’t think you’re a special needs child can do martial arts. Think again. If you have a special needs child. Yes. You can do that. You can’t access things like swimming, you can’t access things like martial arts and you’re out there.
And, uh, and another great organization that I can’t help not to mention is the Nora project, the Nora project. If you’re not familiar, it’s a wonderful inclusion program in schools. Special needs kids get set up with a buddy classroom at a different school, usually in the community. He did the program for two years, and then they do a celebration.
What they call Nora night more. They actually show a whole video documentary of your child. And the two years they’ve spent visiting and all the interactions and the games and the, everything that the kids have done with them. And it’s extremely touching because what it really shows us, first of all, it shows typical kids that our kids matter.
It gives typical kids an opportunity to interact with. The special needs community, where they may not always have that opportunity, especially on a deeper level. And it’s something that my child will always take with them because one thing I will confess about my child and maybe other special needs parents are kind of in this place.
And it’s, it is a tough thing to share, but I will honestly say that my son does not have any friends. Now. That sounds crazy. He has kids in the neighborhood that. He kind of hangs out with, or, you know, sometimes he goes, if we need to have some babysitting type of thing, he is friends with the kids that are at his school in terms of the classroom, but he doesn’t have a buddy that comes over and we set a play dates with, you know, we’ve had maybe a couple of those over the years.
And part of that is because Christopher doesn’t interact socially in the same way typical kid does. And even with some special needs friends, you know, he tends to kind of do more of his own thing. But what the Nora project allowed us to do was to. Help him to develop some of the skills to interact with typical kids have those friendships.
And if nothing else, it’s a wonder memory and experience. We’ll always have that documentary. We’ll always have that big poster of him, you know, that they showed up. They display at the school on that night, will always have all those things that we can talk about years later about when he used to visit so-and-so at that school, I’ve developed a personal relationship with, with Adam and Lauren, as I know you have.
And they’re a wonderful family. And again, they continue to do great things in terms of advocating for kids in our schools.
David Hirsch: So let’s talk about, uh, special needs beyond your own family for a few minutes. I know that you’re involved with key ministry. And I understand the mission of key ministry to be that they promote meaningful connections between churches and families of kids with disabilities, for the purposes of making disciples of Jesus Christ.
So what has your involvement been with key ministries?
John Felageller: Well, it’s, it’s kind of a long story and I’ll, I’ll shorten it as much as I can, but key ministry has been around for over 15 years and specifically their mission is to be able to make churches accessible for. The special needs community. So often the story is that many families and we were one of them.
I find it difficult to attend a church or a faith setting because what are we going to do with our child? Our child has special needs, literally special needs, but you know, there, there needs to be someone who is trained. There needs to be some kind of a disability, the ministry, or an awareness for how this child will interact in the school community.
There needs to be something in place that when a child or a family shows up like this at are at the doorsteps of the church, what do we do? We don’t want to tell them, no, we don’t want you here, but at the same time, we don’t always have the resources. And what ki does is it works with these churches to provide training resources, coaching, mentoring, all of those things.
Some of those things can be done in person. Some can be done through the web in terms of just some different webinars and they do a wonderful job with a lot of those online trainings and that type of thing as well. But I’ve done blogging for them for, um, now it’s been a year and a half, almost two years.
I’ve spoken at their yearly conference called inclusion fusion live, which meets just outside of Cleveland where they’re based out of during that, uh, these last two years. And I can tell you that I have met so many wonderfully talented people that have a variety of backgrounds, some medical, some more counseling, some in terms of therapy and some just ministry.
And so many people that have got incredible stories and incredible things to share. So what I encourage people also too, is that if you’ve never been to a conference and they certainly have conferences like here, for example, they have something called the arc arc conference that provides resources for special needs families.
It’s an individual it’s. But even if you go to one of these, like the one that ki puts on, and there’s some others that I’m involved with as well, it’s the country, even though they are faith based, there are a lot of resources that apply to anyone. And I strongly encourage you that it is. If it’s something that interests you on a variety of levels.
Come check one out. You know, it is a very welcoming environment and the resources are endless. And so, um, I I’ve been blessed to be a part of it. And growing in, in my, uh, ministry as people have called it, which I don’t really call myself having a ministry, but, but I guess it’s the start of it. And, uh, and it’s been a wonderful experience.
David Hirsch: Well, thanks for sharing. I know that, uh, two names that come to mind who are also involved with ki are Sarah Brody and, um, Becky Davidson. Yes. Who are some amazing women?
John Felageller: Yes, absolutely.
David Hirsch: Let’s switch gears. Um, why is it the agreed to be a mentor father as part of this special
John Felageller: fathers network? Well, based on the story that I shared in terms of all of these experiences, if there’s one thing again, that has really just hit home with me, it’s that you cannot do this life alone.
Special needs parenting cannot be done on an Island. You must reach out to people. Uh, that is difficult. Especially being a man, men have a hard time connecting, especially with guys that are strangers with guys. They don’t trust with guys. They don’t feel comfortability level with it. It’s just how we’re wired.
But the importance of having organizations like special father’s network, which provides that level of support of mentorship. For me, it’s a no brainer because this is how I have been able to manage and navigate all of these issues in life. And for me, it’s no question that I would find a way to give back in this sense, because that is also another profound lesson that I got is that as it was a done for you as was done for me, now, go do that for another.
If I help one guy in whatever context that is, then I’ve done. My part, I would love to help lots of men. This kind of a program allows me to meet with guys who quite frankly, don’t want to go to some kind of a support group. They don’t want to go to a room full of strange guys. They just like to connect with maybe one guy and keep that personal, keep that as individualized as much as they can and share wherever they’re at.
But this is needed. This is very, very much needed. And if, if anything, if my story can help a guy who was listening to this say, well, you know what? I don’t have anybody to talk to, but you know what, whether it’s me or someone else, but maybe this story that I’ve kind of unfolded here really creates a space for someone to say, you know what, maybe this is something I need.
Maybe I’m willing to give it a chance. Maybe there is a benefit here. And that’s what I would just express is just, just try it. Um, you have nothing to lose, but you certainly have a lot to gain. In my opinion, it’s really critical. You cannot do this by yourself. You must have some support mechanism. And one guy is a great place to start, but I would say at least half an hour.
David Hirsch: Well thank you for sharing. Thank you for being part of the network. And let’s drill down on that a little bit. Um, you know, we’ve talked about the special fathers network. What our objective is, is matching more seasoned dads with dads that are close to the beginning of their journey, raising a child with special needs.
You’ve been involved for a little bit over a year as a mentor father, but you’re also in this unique situation where you’ve been a father for 11 years. You’ve got a lot of experiences that no doubt a younger dad would benefit from, but you have so many years ahead of you, right. And there’s. So many seasoned dads, dads that have been at it for 20, 30 plus years.
I’m wondering if you can reflect on the interaction you’ve had with some of the other special father’s network dads. What your experience has been, or if there’s any insights, what the benefits to you have
John Felageller: been to really answer this I’ll speak to the event we did in may, because I thought that was great for a couple of reasons.
First of all, I got to really be in a room with a lot of the podcast stats, a lot of the dads who are mentors, a lot of the dads who have been involved with the organization on some level. And it’s really just wonderful to have that one on one face to face connection. It all comes back to all of these guys, having a community, having support, reaching out, building relationships, bridging those gaps and it’s folks through with all of their experiences.
So for me again, to have the personal connections with some guys that I may have only known marginally, um, and then also to, to have those concepts, you know, what they really are. Confirming what I already know. And maybe they’ve been doing a little bit longer, maybe their network’s a little bigger than mine, but you know what?
It’s still the same formula. It’s that same formula for life and for success when you’re living this kind of life.
David Hirsch: Yeah. Well, thanks again for sharing. John, let’s give a special shout out to our mutual friends, Lauren and Adam Levy of the Nora project for helping us bring together. So is there anything else you’d like to say before we wrap up?
John Felageller: I would like to encourage. Every dad, that’s listening to this. If you do not have at least one guy in your life. Go get yourself. One guy, get that one day, whether it’s a mentor from the special father’s network. That again is a great place to start. If you know someone in your community through your kids’ school, uh, if you want to connect through say one of the yeah.
It’s meetups that I do, or that, um, is done down by Matthew, at Naperville, um, connect with one of those, but get yourself someone, because you’re not meant to do this along at the end of the day. I don’t believe you can do this alone. And if you are a dad who has a network, if you are a dad who was a mentor, or if you’re a dad who kind of has those supports in place, then reach out and find those guys who may be, are still on the margins and still need that.
Maybe they need that little motivation or pull don’t give up on them because you never know what they’re dealing with in terms of, again, internally their relationship, their family, what goes on behind closed doors. Uh, it would have been very difficult for me to share all these things. I’m sharing it.
You know, in the beginning too, of, of my journey, sometimes a guy just needs someone to put a hand on him or give him a hug or something and tell him I’m here. It’ll be okay. Let me help you.
David Hirsch: Great. So if somebody wants to get information on key ministry, your blog, or to contact you. What’s the best way about going to do that.
John Felageller: I’m all over social media. So, um, I would say the first place, if you’d like to connect with me is I have. Uh, two Facebook pages. I have a personal one and I have one for my blog. My blog page is John’s blog for special needs parents. So he just type in John’s block for special needs parents on Facebook.
You’ll find me, or just find John Felageller on Facebook. I have a link to the blog page as well, and I usually link it, everything that I do on both. I’m on Instagram, I’m on LinkedIn, I’m on Twitter. Um, and I also link to a lot of things there as well. So just type in my name, you will certainly find me.
Key ministry. My, uh, work they’re usually comes out monthly and I would say, just go to them key ministry online and yeah, just explore and take a look at all of their wonderful resources and all the wonderful people that are connected with them. Also, if you’re interested in the dads groups, the dads meetup groups, there was a Facebook page for that North suburban special needs dads, a meetup, it’s a mouthful North suburban special needs dads meetup.
We have a Facebook page for that. We meet monthly and that’ll probably start back in September. Uh, certainly if you’re a North side or if you’re a South sider or in the West suburbs, uh, I encourage you feel free to come to ours, but also there’s, uh, dads of special needs on Facebook dads have special needs.
That’s run by Matthew Lazzarato who runs the Naperville. Dad’s meetup. And even if you just want to be in a Facebook group, there’s lots of resources that guys share in there as well. So if the meetup might not be your thing, at least not yet can at least get in the group and, you know, just at least meet and communicate with some other dads.
David Hirsch: Excellent. John, thank you for taking the time and many insights. As a reminder, John has 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 21stcenturydads.org. There are a host of ways you can support the Special Fathers Network. You can post a review on iTunes, share the podcast with friends as well as make a charitable donation to the 21st Century Dads Foundation. John. Thanks again.
John Felageller: Thank you, David.
Tom Couch: And thank you for listening to the dad to dad podcast presented by the Special Fathers Network.
The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our. Personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers, go to 21stcenturydads.org. That’s 21stcenturydads.org.
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