← Them Before Us Podcast
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Foreign.
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Welcome to the Them Before Us podcast. I'm your host, Jen Friesen. And today we are having another fun conversation with a friend who runs another podcast, not necessarily an organization, but a podcast called Dads in Autism Land. His name is Mark DeGrasse. Mark, thanks for being with us.
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Thanks for having me. Very excited.
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So on the Dads and Autism Land podcast, Mark shares his real world experiences, both the struggles and the victories, while offering raw, honest, and relatable insights into fatherhood. He understands the emotional weight and uncertainty and sheer love that come with parenting a child on the spectrum while making sure his other child's needs and ambitions are nurtured as well. And Mark both shares advice just from his life and then interviews other folks, other dads who are in the same boat. And so there, there will be a lot of, I'm sure, kind of child centric, why do dads matter? Why does marriage matter? Things as we ebb and flow in the conversation. But I'd love to hear Mark, just as you start, maybe share just a little bit about your family, about your sons, and then just kind of track us to where you are today. What made you want to do a podcast and encourage and interview other parents?
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Sure. It was actually an idea my, my wife had back in January and I was kind of, you know, I, I do branding and marketing, so setting up different media channels is pretty easy for me. And my wife had an idea during church. She's like, hey, you should, you know, she do a podcast just about being an autism father. And I was like, oh, yeah, I could do that. We'll just set up really quick. If it's, you know, somebody wants to hear it, great. We'll see. And, and it kind of just took off like, like right off the bat. We had like a ton of downloads. And what I found was that there's this, this huge community of D that were kind of alienated. You know, I think as, as dads, especially, you know, if you have a severely autistic son, which I'll explain that in a second, you end up kind of, you know, you're kind of back up where your mom takes the lead. She's the one setting up the appointments. She's the one, you know, going through a lot of the technical aspects of the journey. And as the dad, you're kind of like, well, you know, I don't need attention, I don't need help. Like, you're the one doing the work. I just want to support you. But what I found was that there is a group of men that are very dedicated to the task of raising their autism kids. And largely we're just unaddressed because we're not the primary. But it's been fantastic. So just to start that, I have two sons, Damien and Declan. Damian's 12, he's severely autistic, non verbal, probably has the mentality of a two or three year old child, but he's 12 and 175 pounds. So there's unique challenges with that. And then my younger son, who's only 10 months younger, is dead, Declan. And he's very gifted, but also very dedicated. He's kind of a perfectionist, which has its own challenges. So balancing those two aspects has always been important to me and my wife because we know, you know, how much attention the, you know, our son with autism has. So it's been a balancing act to say, hey, you know, both of you are just as important to us. And so we try to dedicate just as much time to him, which, you know, is also a challenge because it's, it's a lot of work. But, you know, having the podcast, I've been able to connect with a lot of other dads that are going through the same thing. So the, you know, the balancing of, you know, the severe special needs and the, you know, parenting a neurotypical child is, is its own challenge. But it's been a fantastic journey and I've, I've actually think I've become a much better person because of it. So I like to expose that to people and also just support the dads out there that are going through some hardships.
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B
Yeah, that's really good. You know, there was an article someone wrote a long time ago, so I was sharing with Mark a little bit outside of the show. And some people know that I worked with kids with special needs in my previous job for about 10 years doing Christian ministry and camping. And so we got a really fun side of hanging out with friends with special needs versus more of like education or the, you know, like medical and things like that, which I think could be fun in their own right. But we definitely had a lot of fun. We just went to summer camp and things like that. But there was an article someone wrote about a woman wrote about having a baby and then learning that they have a diagnosis of having some kind of special needs. She equated to having planned a trip to Paris and ending up in Holland. I don't know if you've ever, if you ever heard that one.
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And she talks about my podcast. No.
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Oh, that's awesome. Yeah. So Anyway, she just says, you know, you go through the whole thing. You're reading all the Paris books, you're practicing French, you're looking up all the places you're going to go, you have all these big, grand dreams and you're going to Paris, and all of a sudden you realize, no, you're actually going to Holland. And you feel a lot of the. I'm not really prepared. I have to totally switch my thoughts and processes to, like, now what am I, like, what am I doing when I'm in Holland? Where. What things should I look up? What's the language I need? And. And. But I like that. She says, it's not that Holland is worse than Paris. It's not that I hate Holland. I. I would give anything if I could just go to Paris instead. But it is a huge adjustment and there is a grieving of what you. When you picture having a baby, and I'm just praying it's healthy and he or she is healthy, and things happen that are really challenging. There can be grief there, but there can be joy there, and you learn. Can you just tell our audience a little bit? Maybe for you and your wife and this was your first child, so, you know, you might. You had expectations of going to be a dad. This is what it's going to look like. What was it like to have those expectations kind of shift over time?
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You know what, it's funny because I never really had expectations of fatherhood. I knew that I'd probably have kids one day and I'll just kind of cross that bridge when I get to it. So it wasn't super surprising. I am Christian, so I think that God places us in the greatest opportunities for learning. And so for me personally, I guess that was having an autistic son. And. And, you know, I. I kind of call both of them, you know, miracle children because they weren't really planned for. But my. If we had found out that my first son was autistic, we probably wouldn't have had my second son. And we had him immediately. So he was actually born before my first son started showing autism symptoms. And if he wasn't, though, he probably wouldn't have had the second one. So I tend to just, you know, approach things as they come. And so when found out and. And I was, you know, and actually, a lot of the dads I talked to have the same reasoning where it's kind of like, I didn't see the autism initially. I was like, well, he's just different. You know, he. He might be slower, you Know, but he'll pick it up eventually. But my wife was very on top of it. Probably within like 18 months, he started showing he had regressions because he had said a couple words and then he stopped saying those words. And then he started getting really lethargic. And then by like 18 months, he was like a different person essentially than he was as a baby. So that, that was some adjustments. And then you go through the stress of the diagnosis and what is it? You know, maybe he just can't hear. Maybe he's deaf. And so he had to go through the deaf. And then if you do think it's autism, we had to go through the elimination of everything else. Like, okay, it's not fragile X. It's not, you know, some speech deficit. It's none of those things. And so then you get the autism diagnosis. I'm not sure how it is now. That was, you know, 10 years ago now. But it was a process. And throughout that entire process, you're wondering if you're doing things wrong. You know, could we have done something differently? Did we do something to cause this? And lost self blame. And so it was, you know, it is a difficult path. And then. But really what, what solved my issue of, of not denial, but. But skepticism about autism was my second son, because my second son was neurotypical. And so we saw the development differences and it was like, okay, Damien's development was much different than Declan's. And so that, I think that helped me personally accept it sooner than I've seen some other dads. But once we were on board, I'm kind of like, okay, here's the situation. How do we move forward and how do we keep living? And like I said, my wife was very active, and so she was driving the thing forward. And I took the role of like, okay, well, I'm going to support this and I'm going to do everything I can to learn about it and then just take action is the easiest thing for me. I, I had gone through many years of. And this is just my whole life of depression caused by kind of undiagnosed IBS is. Is what I call it now, where I was basically nauseous and in a certain amount of pain for every moment of my Life for about 25 years. And so now. And I figured that out about three years ago and. And since then I'm kind of like, well, life's pretty good.
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B
Wow.
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I'm not in pain.
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Wow, that's incredible. Well, and can you tell? So, you know, then before us, our big thing, children's rights first. What? Children's perspective first, always. And, you know, within the community of the special needs community, meaning family, extended family, divorce, which is something we talk about at them before us, is really high. And people can imagine, you know, there's so many challenges that go into it, and then you put on top of it that a lot of parents are trying to do it kind of on their own, or you're shuffling kids back and forth. It just can be so complicated. But can you just share with us maybe a little bit your experience with the challenges and how you and your wife have navigated them and maybe even just from interviewing other folks, what, what anecdotally have you heard or picked up on that kind of help us understand the challenges of that for people's marriages?
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Yeah, you know, a lot of the dads I talked to are still married. And, you know, it's the, the thing. The consistent thing I've said is kind of like the, the mutual engagement of the situation where it's like, hey, you know, we're both in this. We're on the same team, and we're going to get through this together, even if it is extremely difficult. And probably up until Damien was probably 8 years old, it was a 247 job. And, and what we had, because we had about three years where neither one of us really slept, it was like we'd have to trade off, like, okay, it's your turn tonight. You know, and then we, we got. We wouldn't negotiate, but we'd say, you know, what do you need? And then we try to accommodate the other, which I think that that's the key where it's. It's accepting the situation and then it's taking kind of mutual responsibility of it and, and just running support for each other if you don't have that. And I think, you know, sometimes, especially when you're in the. In the thick of it, where it's maybe 24 7, you're. You're having to pay attention to the situation. The divorce looks like, hey, I'd only have to deal with the situation 50% of the time, maybe, you know, and that's. That's. Maybe for some people, it's 100% of the time you don't have to deal with it. But that's the temptation where it's like, maybe it would be easier if we both just had some time off sometimes. And yes, it's sad that it didn't work out and we had to separate the family, but at least we get half of the time you're not full time doing this, but I think that still just leads to other complications in your life where, okay, you do get remarried. Okay, now you have more children and potentially more autistic children. And then you also have this, this autistic child over here. So I don't think it really helps the situation. And honestly, it could always be tough. But for us, like, we found respite. You know, we actually started attending the church we attend called the Ridge in Austin because they had an embrace program where essentially they had one on one, you know, attention for your child, and it was specifically for special needs. And so just that hour per week, it was a blessing. And then we found things like camp, camp, which is the camp they hold in Central Texas. Again, respite for special needs families. And that was helpful. And then we started going to Central Texas Autism center full time, ABA therapy, and then that was even better. And so things have gradually improved over time, and I think our acceptance of the situation was key. And then run, you know, working as a team and understanding that it is completely different than what you were used to. You know, you say, like, oh, kids change things, but special needs kids massively change things. Where you've gone from, you know, living your own life to not only caring for other people full time, but having those that care being unconventional and, and even more intensive than usual. But with all that said, you know, sometimes I, I, you know, Damien's a blessing in a lot of ways. He's a happy guy. You know, it's. It's amazing the things that he could just be satisfied with his life. I use that as an example for myself where it's like, man, I think I need some super complicated situation to be satisfied with my life. And now I look at it as like, no, I just need quiet sometimes. Like, that's, that's enough to be happy. And so it's, it's difficult. But again, it's, it's a blessing in a lot of ways, too.
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B
It's really good. You know, we talk a lot about gender difference in the home that a child does best, one raised by their mother and father, in large part because men and women parent differently, they see situations differently. You talked about that a little bit. Talking about women tend to be the one that are kind of organizing the things, and I'm making the appointments and I'm kind of getting us where we need to go on time and all these things. And, and maybe that leads kind of like you were saying, I just wonder sometimes too, if dads might feel like, hey, in addition, all this pressure and marriage isn't what it used to be. I also don't feel that engaged with what's going on. So it doesn't matter that much if we sort of split up. And like you're saying if, if both people really see it as this a partnership and we are working together, maybe that helps it not feel so, so burdensome on all the appointments, all that stuff feel burdensome just on one person. But can you tell us some ways? Because, you know, we can think about it with typical kids, typically developing kids, that there might be some gender difference, things that are really important. But have you noticed anything in particular, maybe unique between your two sons, where your interactions with your son, who's on the spectrum versus your wife's, really make a big difference and how. And like you working together makes a big difference for him in a little different way than your other son?
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Yeah, yeah. It's, you know, it's kind of interesting because some of the roles are just super obvious. You know, it's kind of like they say, you know, the mom is supposed to be the nurturing side and the caregiver, whereas dad kind of a role is to toughen you up a little bit. And that is mom's role sometimes, too. But I think our role specifically is, is that aspect and we kind of, we fit it. You know, I play with the boys, you know, I rough house and, and, you know, we have fun. And I think they kind of expect that, like, oh, dad's the, the fun, you know, goofy guy versus mom. You know, you go to for care and, you know, some. She's actually, she's good at discipline too. But I, I take that role as well, where you have to give that, that masculine side. And, and as much as society sometimes these days likes to demonize that as like, oh, that's everything. Masculine, sad. While also encouraging women to be more masculine, which is ironic, but, you know, I think we, we kind of fit into those roles. And as the boys have gone bigger, and my son, you know, Damien, he's 175 pounds at 12, he's probably going to be. I'm 200 pounds and six two. He's probably going to be 300 pounds and like six five. And so I'm the only one at this point that could actually handle him physically. So it's, it's almost like, you know, more of a demand than you may have in a, you know, neurotypical child where my other son, Declan, he is getting bigger, but yeah, and even for him He's. They're both about as tall as mom, so we're having to. To establish those kind of physical differences as well. And it's. It's kind of easier because it's, you know, it's not a philosophical debate. It's just like, here's this situation. I'm physically able to handle this situation where she might not be able to anymore. And so some of those roles are. Are kind of switching and going back and forth. I don't know if that answers your question, but I think it's acceptance of. Of the situation, the actual situation, not the idealized version that we would love to have. But, like, no, this is just what we're dealing with allows us to go to those roles that. That are better for us as. As they get older.
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You know, it's good. It makes me think there's a lot of the wrestling that dads do with their kids, but particularly the boys, is teaching them, you know, that there is a temperance that has to go along with your strength. Like, dad could launch you across the room if you got mad or if you are fighting too hard or the kid bites you or something. It's like, okay, now we're done. Like, you're not allowed to do that. So there's this. They're always butting up against boundary and understanding that, like, yeah, it's good to roughhouse and play and. But you do that differently with different people. You can't, you know, shove your little sibling across the room. But that seems like it would be even more important with. Well, especially you've described now he. That maybe mentally he's a lot younger, so he has the body of growing into an adult, but then doesn't have the sort of capacity to, like, regulate how strong you are. So you don't just like, snap somebody in two. If he doesn't have you teaching him what that looks like or like, really strict boundaries. And mom is only going to be able to do it for a little bit in a certain way to a certain height, you know. Yeah, so that's really interesting.
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No, well, and for Damian specifically, like, we knew he was going to be big. He's always been on the, you know, high percentile in terms of size and weight. And so we're like, you know, you have to picture it like, if it's not appropriate for somebody to do when they're 18, then it's not appropriate for them to do when they're five. And that might look, you know, like, keep your pants on when you go outside, you know, it sounds like, oh, it's so funny. He took his hands off. It's not gonna be funny when you have an 18 year old, 300 pound linebacker. Oh, it took those pants off. Like, nope.
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B
Like legal trouble and stuff. A lot of friends, especially because they don't understand different things that are going on. We talked about that a lot. Like even helping understand, you know, it's not appropriate to hug everybody. Like you're saying, you do a high five, you do a handshake, you know, when you're saying hi to girls, like teaching them how to be appropriate because you, like you're saying you need to think about what they're doing at 40 years old, walking around the community more by themselves and just then just, oh, yeah, it's so cute when they're like, oh, he like whacked me or whatever. I was like, no.
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Yeah. Well then you think like, he doesn't understand language a lot of the time. So if there was, say a police officer, like, stop right there and he doesn't stop, then you start getting into the really scary situation. So, so we've always kind of kept that, that mindset where, you know, what's going to be safe for everybody involved and, you know, how's he going to survive? Which is always, you know, a big concern.
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B
Yeah, for sure. What advice do you have for those ways to focus on your children that then do not have the extra needs or the extra special needs to make them feel valued, to make them feel seen, even though they're not getting maybe the 24 hour kind of attention that other kids require?
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A
Oh, that's a great question. And we thought about that too, right from the beginning because we're like, man, you know, Damian's taking up a lot of our time, a lot of our attention, a lot of our energy. Just physically, it takes a lot more energy and my wife has been fantastic about that. So it's, you know, it's really, you know, Damian, we enrolled in Central Texas Autism center, and so we said, hey, if we're spending this much money for his schooling technologies, technically, then we should do the same thing for our other child. So we enrolled Declan in Regents, which is a Christian classical education school here in Austin, and then also signed him up for the, the sports that he wants to do and, you know, just make sure that he's also just as active because we, he's seen what we're doing with Damien. Oh, Damon. Before we went to the Central Texas Autism center, we were at, you know, five or six different therapists constantly driving around to, to get him to the places. And we're like, well, you know, we don't want him resenting his brother because honestly, when we're not around, like this is his family, his other brother. So we can't have his other brother resenting him. We want to make sure that he understands, you know, his role, but also his individuality. Like, it's not like you're just around to take care of your brother. We want to be like, no, we want you to have your own life. We're going to, you know, help you out with that as much as we can for as long as we can. But ideally he would be with you because we, we decided that we never wanted to see him in a home just because he is non verbal. And we had issues in the past where that led to, you know, issues where he can't protect himself, he can't argue his case. So it's, it's more intensive. So we have tried to, you know, my other son is on select baseball team which, you know, if you know anything about club baseball, you're like, that's a full time job too. So it's, it's a lot of work. But honestly, you know, I think that the, you know, it's our responsibility to make sure that they are raised in a way that, that makes them as productive and, and helpful as possible. And even with Damian because he. Well, actually since having my, my podcast, I talked to a dad whose son was severely autistic, non verbal, just like mine and ended up with a job at a hotel. So even, even that I'm like, okay, well this is hopeful. Like maybe there is a place out there for him to contribute back to society. But if nothing else, I see my other son is much more empathetic. He's excellent with special needs kids, he's excellent with young children. And I think a lot has been added to his life just from, you know, being part of our special needs family.
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B
Yeah, that's awesome. You mentioned the idea kind of that culture really is, it's kind of in an effort to elevate women to, you know, maybe there was a point where men were elevated and women were really pushed down. I mean, you look at cultures around the world right now that's still happening, but sort of in an effort to elevate women and oh, we need rights. We, it's like really needed to push men, like act like men are trash and toxic masculine. Yeah, the only kind of masculinity is toxic masculinity. Can you just speak a little Bit to maybe sort of your picture or what you would say is like, what makes good men? What makes good husbands and fathers? Like, what are those qualities? Why do you think those. That's so important to kind of talk about and elevate in. In society?
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Yeah, you know, I take a lot of times a biblical perspective, maybe a progressive biblical perspective, because some of the stuff, you know, you see in, like, the Old Testament, you're like, wow, that's. It sounds pretty harsh right there. But I do think we have, you know, to be a good man. It's really. It's caring for your family. I do believe that it's. It is the man's role to be, you know, the spiritual center. Like, it's our job to say we're going to church and we're following the Bible and we're, you know, adhering to these rules of a greater power that's. That's beyond us. And that actually makes the job a little bit easier because there are a lot of, you know, aspects of the Bible that you could adhere to yourself not sinning pretty. It sounds like an easy directive, but if you actually look at, you know, the commandments and things like that, adhering to them is pretty difficult. And most likely you're going to fail a lot of times, but if you don't try at all, then you're definitely going to fail. So I try, I think, you know, my role is to be an example of, here's what it means to. To live a godly life. Here's what it means to attempt to be Christlike and that. That could be as simple as, you know, encouraging good habits, you know, taking care of family, loving your wife no matter what, and trying to make your relationship and your marriage be an example to your children to say, here's what it means to care for the family and provide and, you know, give them the things that they need to grow. So I think that's. Nothing I've said is easy. And in a lot of ways, I still fail all the time. But I think my attempt to be like that shows. And so over the last three, four years, specifically, I've gone through. Through a big, you know, mental, spiritual and physical transformation. And, you know, for a lot of it, I. I felt like, man, am I being selfish by trying to improve myself in order to provide better for my family? Like, is this just all for me? And what I came up with was that it still wasn't about me because it was, you know, working on the future version of me that should hopefully be able to provide better and do better. And even in the process of trying to improve myself, I'm able to show my. My son Declan, primarily, like, hey, here's what's possible if you just decide to be better. And. And also for my wife to say, hey, I'm. I'm, you know, willing to go through the sacrifices that I've made. And, you know, a lot of times it could be as simple as giving up drinking. You know, let's say that. That, you know, because you're in this hardship and because things are difficult, like, oh, I have a drink every so often, but a lot of times that's just a crutch or an avoidance of what you should be feeling in this moment, and then that just numbs your ability to react properly to it. So giving up those things, you know, like I said, I had dietary issues, and so I had to give up beef and pork and eggs and a number of vegetables and fruits and all that kind of stuff. So my. My crush was mainly food, where I was like, oh, yeah, food's great. Like, I always feel happier eating, and I had to give that up and then a bunch of other things. So I think, you know, my role is exemplifying what's possible with sacrifice, hopefully has made a difference. And, you know, my family's pretty happy, so I think it's working.
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B
Yeah, well. And then kind of as a final thought, what would you say to encourage, you know, if there's young men who are. I mean, marriage is not looking popular right now. It's. It might feel scary. Our culture doesn't talk about it. You know, we've. I've talked on other podcasts and conversations about the 50% divorce rate is actually a lie. That's. That's. That's kind of old news. It's not that bad, though. A lot of people just aren't getting married anymore. They're cohabitating. They're doing these other things. But, you know, if there's young men listening who are like, oh, man, well, what you're describing actually sounds quite hard. I don't know why I would want to do that. You know, I kind of am enjoying my life doing whatever now. Or they're looking around and, like, thinking there's no women that have the values, alignment or whatever, what would you say to just young men that are. They're like, maybe I'd get married someday. I'll. I'll wait 10 years, or they want to get married now, but they're kind of like, this sounds scary. I don't know if I could do it.
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A
You know what? It's funny because I. I always tell people because you. I. I see that I know guys who are like, even if they are married, they're like, I'm never having children. And I think they're missing out on probably the biggest opportunity ever for improvement. And that's, you know, that's not everybody's cup of tea. And maybe they are satisfied being alone and doing their own thing, but personally, I don't think you could reach a real level of manhood without having children. It's just not possible. What children are to me is the greatest project of your entire life. It is, you know, giving the responsibility of making another person, and it's live and it's dynamic, and you don't know what you're going to get when you go through this process and it forces you into growth that just wouldn't have been necessary had you not gone through this. Now, that, again, that might be like, oh, it's selfish. You're just doing this as a project. It's like, no, no, this is. This is a manifestation of your entire life is creating another life, and you're doing it with somebody else, which also requires a ton of coordination. And honestly, you could think that, oh, I have everything I need. You don't know that. You haven't experienced everything. How could you possibly make that decision? That's pretty arrogant of you to think that you've made it just because you decided that. How does that work? So, and again, I have a pretty different perspective of that. And I don't, you know, pain's necessary for growth as far as I'm concerned. And, and pain. And that doesn't mean physical pain all the time, but a shift in your mindset. And that's supposed to be there. That's what we're here for, as far as I'm concerned, is to grow as much as possible, to learn as much as possible. And I just don't see how you could get that without going through this. Not that you can't, because I. I don't know what that situation is, but personally, before I had kids and before our, you know, I was married, I. You just have no idea what it's like. And I think it is, you know, the most, you know, godly thing you could do, and according to the Bible, that's our job, you know, is to multiply. So there you go.
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B
Yeah, well, I mean, it sounds more like it's the grand kind of adventure of life. And I think a lot of men do feel kind of aimless. Like where is their adventure to be had anymore? There isn't as much of like go west, young man. Like nobody's ever been there. Build a house, get a, you know, get a settlement or whatever. But what you're describing is quite an incredible adventure and you have to think actually helping craft the life of other human beings that go on after you die. It's the only thing in, in a sense that really goes on after we die is you know, kind of some genetic material maybe unless you're really smart and famous and people care about your ideas or your books or something, you know. So that's a pretty exciting thing. Well, wrapping up Mark, where can people find you? Or there's some, anything you're working on or passionate about that you just love people to know before we kind of sign off.
- [29:56]
A
Sure. I got a bunch of stuff going on. If you go to my, my personal website, markdegrass.com I put a lot of my content there and then and dads in autismland.com if you are a autistic father or just any kind of special needs family, it's, it's really good. But you know, especially because there are a lot of resources for, for moms. My wife actually has a non profit called Special with the side of mom and, and it's one of many. And so if you are a dad that feels kind of alone, feels like, you know there's, you don't deserve help because you're not taking the brunt of the work, then you'll, you'll find a lot to learn with, with dads in autism land. So definitely check that.
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B
Awesome. Well Mark, thanks so much for all your work and thanks for joining the theme for us podcast today.
- [30:41]
A
Thank you. It's been fun everyone.
- [30:44]
B
We hope you enjoyed this conversation. Thanks so much for joining the Them Before Us movement.