John Fela- not just a dad

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If you want to connect with me, email me at jennifergill68@gmail.com or you can dm me 

Transcript

SPEAKER_00 0:02

Well, hi everyone. Welcome back to the solo parenting podcast. My next guest is John Fella. He's also an advocate for his son, who is 18 years old and has autism. He is also an author. And before I introduce you to him, let me just give you a little bit of his background. John is a trademark of the title Swiss. Sorry, Army Knife of Disability. I have to write this down. He is a parent of an 18-year-old son who is has autism, and he and his son is nonverbal. John is also a formal elementary educator for the last 20 years. John has written a book called Faith Like My Father. It's a book written about his journey of a special needs son and telling his story through the lens of Christian faith. So welcome, John. How are you today?

SPEAKER_01 1:11

I'm doing well. Thanks for having me.

SPEAKER_00 1:14

You're welcome. So what kind of resources should every special needs parent um know about being a good one?

SPEAKER_01 1:24

Yeah, so uh that's that's a big question. Um, but you know, my my advice for for special needs parents and parents of disability, um, and I'm a big advocate if you uh read any of my stuff or or listen to any other podcasts and things, I'm a big advocate for community, right? Um I think the first and best resource for any parent is to have an intentional community around them. Now, when I say that, I I don't mean necessarily your family, your friends, because I ideally you have that and they're in your life, and that's great. But do you have people who understand your experience? Do you have fellow special needs parents you can talk to who can relate to you on whatever level in terms of what you're experiencing and what's going on? So I'm always big on trying to intentionally connect with those families, maybe at your child's school, maybe in your own neighborhood, a church, whatever you belong to, and and try to make those connections. And then in terms of bigger resources, you know, uh there's a lot of great stuff out there. Um, you know, again, I I always encourage folks to, as they're starting to kind of branch out, um, use social media to kind of find things that are close to you in your area. So for example, um in my area in the in Chicago, um, you know, there are a ton of great um, you know, meetups and parent support groups and and things like that. There's even a dad support group that I started many years ago that has now grown and blossomed into uh a much bigger group kind of a thing. So so there there are ways that you can um plug into things that already exist, but also where they don't exist, I always encourage folks to make them. But you know, in terms of bigger organizations, some of the ones that I always like to mention. Uh, so one for sure is called the ARC ARC. So the ARC is a national organization. They have chapters in every state, and they provide um help and support for families, more so in terms of navigating um the legal process, the IEP process, um, long-term planning, you know, setting up uh financial stuff for your kids later in life, housing, residential, et cetera. Um, so they're a wonderful organization because of the um resources they provide. There's a lot of great professionals that are you know attached to that organization. Um, and you know, of course, they do uh, you know, monthly uh, you know, virtual things and in-person things. And then of course they have big um uh they have big conferences, you know, uh specific to your state, but also national as well. So I would definitely check them out for whatever your state is, just go on the ARC ARC and you should find one for your state. Um, another great organization I like to mention is Key Ministry, K E Y. So um I I have a background in the church disability world in terms of doing disability ministry with churches and providing resources and training for them to help develop programs for working with the disability population and their community, kids, adults, et cetera. Key Ministry is a national organization that provides those, but also provides a lot of other support for families, um, a lot of other practical support, whether you're um, you know, homeschooling or let's say looking for some direction in terms of um, you know, your child's future kind of a thing. They provide a ton of great resources and there are a lot of great people connected with them. They have a wonderful uh yearly national conference I'll actually be speaking at next month. Um, so I'm very excited about that. So so they're great in terms of kind of being a hub of information and resources. And then the last one I always like to mention is Special Fathers Network. Special Fathers Network is based in Chicago. It's a national organization just for dads, special needs dads. Um there there are some moms and and ladies attached to it as well. Um, but but the intention is to support dads through uh support groups. Uh so there are virtual support groups, there are in-person support groups around the country. There's a mentoring program. If let's say I my groups are not my thing, you can get connected with one dad in your area, maybe that you can uh kind of um you know have a dialogue with. And then, of course, there's a lot of great resources online, YouTube videos, wonderful podcasts, etc. So that's an organization I always press, definitely for the dads. But you know, even you know, as uh a mom or even in terms of a family, there's a lot of great resources that uh that you can access as well.

SPEAKER_00 5:40

Okay, awesome. So you've got a group of your own set up. Is it on social media or is that like a WhatsApp kind of a group where if somebody wanted to connect with you, can they do that?

SPEAKER_01 5:52

Yeah, so my the the groups that I personally run are are in person in the Chicago area. Now, I want to stress though that if you are in a different part of the country and you are looking for something, please connect with me because I can definitely uh provide you with some resources probably in your area. For example, Special Fathers Network, you know, there are there are chapters all over the country. And again, the the meetups, the virtual meetups, you know, guys are all over the country, but but it's virtual. So, you know, there are in-person meetups that I host personally in the Chicago area, but there are other great organizations um in my area, but also around the country that that do virtual as well. So if you're looking for something and and you're not sure where to start, feel free to reach out to me because definitely in Chicago I can help you. But otherwise, even if you're in another part of the country, I can probably point you in a direction.

SPEAKER_00 6:42

Okay, awesome, awesome. So you're gonna be a guest on the stage as a speaker, then, is that correct?

SPEAKER_01 6:50

Uh at the conference I mentioned?

SPEAKER_00 6:52

Yes.

SPEAKER_01 6:53

Yeah, so that that is one of the conferences that that I speak at yearly. Um, that I would tell you is probably one of the biggest disability conferences in the country, and and it's the largest disability ministry, meaning church-based disability conference in the country. Um, at that one, um, and I usually speak on topics on uh parenting or fatherhood and that kind of stuff. Uh this time I'll actually be hosting a panel discussion. And I'll be hosting a panel discussion with uh one of my uh oldest and dearest friends in this world, um, who is also a disability mom herself and has her own podcast. So we're gonna be doing a panel for parents with disability parents there. And so, you know, that will be our focus this time. Um, but but also at these conferences, you know, again, I I present on a variety of topics. And of course, now with the book, I'll definitely be, you know, promoting my my book as well, which is very exciting.

SPEAKER_00 7:43

Awesome. And um, if somebody was interested in that, is that like everywhere around in the states? Uh certain dates and certain times if somebody was interested, or how can they get tickets to it? Or is there yeah?

SPEAKER_01 7:58

So it's it's an in-person conference. Um, it's called Disability in the Church. So you can go to keyministry.org or you can just go to Disability in the Church, punch that in, and you'll you'll find the conference page. That's going to be held live in uh Northern Virginia in the DC area um the third week in April, so the week of the 21st. Um and it's uh it's a it's a three-day conference. Now, some of it, the the mainstage uh speakers. So we have mainstage speakers and we have breakout speakers. The main stage speakers will be live streamed on uh on their Facebook and YouTube channel, I believe. So you can always access that, but in terms of the breakouts, those are only in person. However, what I'll tell you is great about that organization is they um are beginning to do smaller conferences, just like the one they're doing in DC, around the country in different venues. So if you go on Key Ministry, you'll see that they're doing what they call uh uh you know, disability in the church on the road or a tour or something. And they'll be in some different towns around around the country for this uh during the year. I may or may not be at all of them, but I'll definitely be at the biggest one for sure. Um, so so that's really a great place to get connected. But but again, a lot of these organizations I've mentioned, you know, have some kind of a conference virtual or in person. So it's it's really just a matter of kind of what you're looking for and you know what what's a good fit for you.

SPEAKER_00 9:21

Okay, okay. So speaking with like from your son, what kind of excuse me, uh, Pacific uh challenges do these children go through that you're aware of or maybe you've heard of that?

SPEAKER_01 9:40

Yeah, so it it it really depends on the nature of uh of the disability. So in my son's case, he doesn't have a physical disability, so he can, you know, get around fine and navigate a space, but his is a cognitive disability. He has uh what they would refer to as level three autism, which means it's the most severe kind of autism, and he's non-verbal, so he doesn't use spoken language. Um, so in in his case, for example, you know, the the challenges are one, um, he will never truly be independent. He will never be able to take care of himself. He will always have someone taking care of him. Now that's that's a tall task because first of all, um no parent is ideally is going to outlive their child, right? Um it does happen, but ideally not. So how do you plan for a child to live, you know, say 30 years, you know, after you're gone, for example? And and certainly even when you get to a certain age, and unfortunately there are families like this where um parents who are elderly, you know, even in their 60s, 70s, 80s, who may also have health issues, are taking care of their adult child who might be in their 40s, 50s, 60s themselves. Um, but cognitively they they cannot navigate the world. So, you know, how how do you manage those things? Now, again, there are there are lots of organizations and group homes and and folks that offer residential services and things, that's fine. But but like with anything, you know, there there might be a lot of choices, but they're not all good choices, or they might not all be the right choices for your family. So, how do you navigate that? So, again, this is where plugging into the things I mentioned previously here with community and some of these organizations and and you know, doing some of these conferences and and classes and things, you know, this can help you navigate that process because again, in in my son's case, we are literally going to be planning out his entire life. Um, and then of course, when when everyone is gone. Now, with a lot of families like mine, um, normally there's siblings, and and many times a sibling, brother and sister, might step in and take on a caretaking role or at least be the person who kind of oversees, you know, the child with the disability when they grow up. Um, in my son's case, he's an only child. Um, I am divorced from his mom and now remarried. We may or may not have other kids. Um, you know, so the the reality is that he may not have a sibling checking in on him. He may not have any family checking in on him, quite honestly. So this is also where I stress the importance of community. I stress the importance of having those intentional relationships and plugging into these organizations, and especially again, speaking from a uh church perspective, because I I've worked with churches for several years now in terms of developing these kind of programs and communities, you know, many times it's it's folks from, you know, that that experience, that church or house of faith experience that can provide community, that can check in on him in the same way they might check in on somebody else, let's say elderly in the community or in hospice or whatever's going on. You know, this is a person who is going to be detached from the world once their family and once the people that have cared for them are gone, because they won't have anybody checking on them. Um and that's and that's a very lonely life, life to lead, right, for anybody. So that's where we want to stress really getting those plans in place and really thinking about who are the people around you that might be able to speak into their life. So so that's you know, those are some of the things that we've had to consider in my son's case now. Is it is it the same for everyone? No, because you know, certainly there are you know adults who you know have a disability who are way more high functioning, who can live independently, who can manage their affairs, and that's great. Um, and and certainly there are good resources for for them out there too, because you know, all of them will need a little help at at some point in some way. Uh, but in my son's case, it's just the most uh extreme version of that. And again, this this is where you know, as as much as you can connect with other people to help support you on that journey, that'll make it easier for you now, but then also certainly, you know, down the road when when you need to make those harder choices.

SPEAKER_00 13:39

Okay. So just a question back, because like somebody like me, then when you see somebody that's got autism, you don't really diagnose them with different stages of autism. That's something totally new to me. And like, is there like different categories that somebody uh goes through? And then and if they do, like what stage does the government kind of step in that that you get help from them in case somebody's listening and they're just wondering what's how do I do this?

SPEAKER_01 14:10

Or yeah, and and that's that's a very big question. So so, first of all, the the levels of autism, quite honestly, they're newer to me too.

SPEAKER_00 14:19

Okay.

SPEAKER_01 14:19

Um, I I know that's more of a clinical term that you know, so I I always kind of have that in my back pocket. If someone is like, well, what kind of autism does he have? Well, he has the most severe kind. Um, but but you know, when when I say level three, it's level one, two, three. You know, level three is going to be, you know, really, like in my son's case, cannot, you know, manage their own affairs at all, kind of a thing. Uh, level two would be someone who needs some of those supports, but still can make some decisions for themselves, can navigate their environment. Um, they they do need the support, but the support might not be a 24-7 care thing. And then level one can be someone who who has autism, but again, can you know function in society. These are the kids who maybe, you know, still have an IEP, but you know, they may just need, you know, something's tweaked or accommodated in terms of their learning or navigating their environment, kind of a thing. You know, they they still need support, but more than likely they will probably have an independent life. Um, and again, that that's a very generic kind of of a description. So if someone's listening, they're like, well, you forgot this or whatever, forgive me. Um, but you know, in in terms of, you know, the stages and how they present, you know, the the bottom line is that anyone from level one to level three is going to need support. Now, what that support looks like, again, is based on the level and the severity of their autism. And in terms of government support, so again, this is this is a big question to answer. The easiest and most succinct way I can answer it is, you know, you you need to first of all make sure that that you have your child's diagnosis and what that is. And then looking at, you know, what you know, working with your public school district, because, and this is one thing that I'll also say we have a lot of kids of disability who, let's say, they're homeschooled, which no judgment or anything, but they might be homeschooled or go to a private school. But I always encourage families to work with your local public school, even if they're not attending there, um, because you want to at least get them an IEP if necessary and just kind of have that available, because a lot of state or federal-based and funded organizations are going to want to see that IEP to see kind of, okay, what is their level, what are they capable of, and then what might be available now. In my son's case, for example, he'll be accessing SSI and Medicaid funds, kind of a thing. Um, you know, these are funds provided by the government. And to be quite honest with you, it's it's the same funding mechanism that my mother in her 80s with dementia, who is also an adult with a disability, has kind of a thing. So it really is the funding that's provided for someone who is, you know, partially or totally disabled. Um so in my son's case, that's something that he'll probably be getting the rest of his life. Is it enough for him to, you know, cover all of his expenses? No. Um, but you know, that's also where you can have other funding set aside that's protected from taxation and the state because, you know, and and again, without getting into the whole thing here, there are limits on income you can have at any given time in this type of thing. So that's where you're going to want to lean into your um legal professionals, your financial professionals. Again, the ARC is a great organization to start that process and get that information. There is a lot to it, but the one piece of advice I would give to any family, regardless of the nature of the disability or the level of it, is start as soon as possible. Okay. You might be thinking to yourself, my kid is five, I don't have to worry about this yet. Yes, you do. Okay, in in the state of Illinois, and Illinois unfortunately is notorious for this. We have a particular system where you access funding through the state, and that is a system that you need to get plugged into as soon as possible because there is a long list and not everybody gets what they want when they want it. So um, you know, uh get get advice as much as you can, start that process, you know, get kind of get your ducks in a row. It's never too early to start. Um, you know, don't freak out or or panic, as I would say. Um, but but definitely start getting the information that you can as soon as you can.

SPEAKER_00 18:21

Okay, awesome. So being a father of a child that has autism, what kind of struggles did you go through that maybe might help our listeners?

SPEAKER_01 18:35

Yeah, I I went through quite a bit. Um now uh I I speak a lot to the journey of being a special needs dad. My my book that I just came out with is essentially my memoir, and and I speak a lot to what I experienced specifically because uh moms and dads, men and women process this differently, right? And you know, it there's a reason why the divorce rate is precipitously higher with um parents of disability than than normally. I mean, the divorce rate is already high. I've I and don't quote me, but I think the last numbers I heard is that it might be like one in four families. Um, you know, that's that's much higher with families of disability. Again, I don't, I'm not gonna quote actual numbers for sure, but you know, the the percentage I've always heard is like 80%. Okay, so the the bottom line is that there's a lot of stress. Why? Because again, when you have a child with a severe disability, like in our case, um, you know, life kind of stops. You have to throw everything, all of your energy, your resources, your money, your time into figuring out how to support that child, whether you have other kids or not. Now, with a lot of families, um, you know, they have an experience kind of like what I had, which is uh the moms kind of jump in. Um, they, you know, kind of start to manage things in terms of schedules and doctors and therapies and insurance. You know, we we call we lovingly call them our autism mama bears. And and my son's mom is one of them. And and she was great. But the problem is that for a lot of guys, a lot of guys become checked out emotionally. Um, they're frustrated, they're, you know, there's a lot of guilt, shame, et cetera. You know, why did my kid kind of um you know turn out this way? And and a lot of times they have a hard time connecting. Now, that's not to say there are a lot of great special needs dads out there, and I know a ton of them, but there are a lot of dads who just, you know, they they can't kind of, you know, create that bridge to have that relationship with their child when they're not typical. So for a lot of guys, the the knee-jerk reaction is, well, men are fixers. I'm gonna throw myself into my work. And I will throw myself into my work and career. I'll make a lot of money, we'll pay for all these things, whatever the kid needs, and mom will handle the rest. Well, that's fine. But here's the thing: one, that also means that dad becomes emotionally cut off from the family. So the marriage is suffering, the relationship with the child is suffering. Um, dad feels overwhelmed because he's working all the time, mom feels overwhelmed because she's handling all these things at home. Um, you know, so so the marriage is on, you know, shaky ground, the family is on shaky ground and all of this stuff. And and what was especially unique for me was the fact that I wasn't even the breadwinner in our family when I was married to my son's mom. We were both teachers at the time, but she always made more money. So, what what what do you do with that? So, my question all all the time was what do I do? What what is my purpose? What what do I contribute? Now, of course, I loved my son. I love spending time with him, and I did spend a lot of time with him, and of course, I supported everything that he had to do. But what I also found was okay, my gifting isn't necessarily in the details. I mean, I can do a lot of that stuff, but mom is clearly good at it and likes to do it and wants to do it. My gifting is in relationships, my gifting is in networking, my gifting is finding resources. So that's what I focused on. I focused on building and developing those relationships, those friendships, finding resources. And of course, then that blossomed into the advocacy work I do today. But the bottom line is that that all started for me being in a place of Frustration and fear, and feeling like I had no one to even talk to who even understood me. Right. And this is this is a big part of a lot of the presentations I do in person and online. So, you know, I when I speak to dads, it's a reminder that, you know, um you you have value. Your value might not look the same as it does moms in terms of you know what they do and what you do. But the fact is that you can have a relationship with your child, you can have a relationship with your spouse. It's going to look different. It might not be what you wanted, but that's okay because it's still your child. And for me, it's it's always been about how do I connect with my child? You know, they're not going to do these things, but you know what? They may enjoy doing other things. Or maybe there's a different way we can enjoy some of the same things, right? So that's really what it all kind of comes down to. But but again, it's also about as a man identifying who you are in the family, understanding what your value and worth is, but then also making sure that you're stepping up and stepping into your family. But if you're having struggles doing that, of course, I'm going to encourage any parents, moms or dads, you know, separately or or together, get support, get plugged in with some parent support groups, or find those people in your community, as I mentioned, that that can speak to you. And and of course, where you know there are some real issues, you know, good finding a good marriage counselor is absolutely a lifesaver. It very much helped in my relationship in my marriage to my son's mom. And so I would I would very much encourage that as well if if you feel that's needed. But the main thing is don't do it alone. Don't do it alone because you can't. And you need people to help support you on their journey.

SPEAKER_00 23:44

Okay, okay, awesome. So if somebody was to look to read your book, yeah, I guess it's available everywhere then, or yeah.

SPEAKER_01 23:53

So it's called Faith Like My Father. It is available on every platform. It's on Amazon, Barnes and Noble Books A Million, all the different ones. Um, if you just Google it or you know, go on any one of those, you'll find it. It's it there's also a uh banner on my website. So my website is just jotfella.com. If you go on there, you'll see a banner you can click on it and it'll take you to the Amazon link. Um, so yeah, so it's it's available anywhere. Um, you know, of course, if I run into you at something like Disability in the Church, you can uh get it for me there as well. Um, but otherwise it's it's available on all those platforms.

SPEAKER_00 24:25

Okay, so somebody wanted to connect, they could go through your website. And also, I guess you're available on social media accounts as well.

SPEAKER_01 24:34

Yeah, uh the website is a great place to start. Um, I have a lot of content on there. I will tell you, I don't have all my content on there because my social media manager doesn't always get it up there uh quickly. But um, you know, I would encourage you to go to my website again, just johnfella.com, or you can just Google me and you'll find a bunch of stuff as well. But I am on all the socials. I'm on Facebook, I have a personal Facebook as well as a blog page. It's John's special needs blog on Facebook. You can connect with me on either or both of those. I'm on Instagram, I'm on uh LinkedIn, X, all of those other platforms, John Fellow. You can just plug me in and you'll find me. Feel free to message me and connect with me on any of those. Happy to speak with you, connect with you, and of course, uh, you know, if I can help in any way, be glad to.

SPEAKER_00 25:19

Awesome. Thank you so much. Uh, to the listeners, I hope you enjoyed this podcast. Um, I I sure did. And thank you, all right, everyone. So that was my guest, John. Um, talks about an 18-year-old son who has autism. And if you want to connect with him, he's got a website. Um, like he said, he's got a lot of videos posted on there that you could reach out to him or just Google him on Google and you can connect with him. So thank you for everyone for showing up. And if you want to connect with me, you can do that with my stand store. I will put the link in there. And I've also got a book on solo parenting, which is available on Amazon, and I can put the link in there as well. And if you want to connect with me personally as being a solo parent, reach out to me at jennifergill68 at gmail.com. That is again jennifergill68 at gmail.com if you want to connect with me as a solo parent. Thank you, and I will see you on the next episode. Have a great day.