The Autism Dad

In this episode, we talk to Rob Gorski AKA The Autism Dad about his 3 autistic sons.  

You can learn more about Rob, his mission to educate about autism, and his podcast at theautismdad.com

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Deonna: [00:00:00] Hey y'all. Welcome back to Raising Disabled. So today we have Rob Gorski with us. He is the parent of three autistic kids, and we're just so excited to have you on today. When I first joined the disability community back in 2020, I was just seeking for anyone who knew how I felt. I felt incredibly isolated and alone, like just an island basically.

And I just kept in the last few years I kept seeing this dad in his car with a beard, just keep showing up and showing up in my feed. And I'm like, who is this guy? And at first, you're talking about autism. At first I thought my kid doesn't have autism, what, do I have to learn from this guy?

And then you just kept talking about your experience and I thought, oh my gosh, it's the same feelings. Like the disability might be different , but the feelings and everything were the same. And [00:01:00] I was really intimidated by autism just in general. And I know a lot of people probably feel this way.

It's, there's a lot of mystery behind it, I feel like, and a lot of misunderstanding and things like that. And so I was very intimidated by it. And I started listening to your stuff and it just stripped some of that fear away from me. And, I know you've probably made other people feel that way, but like even the last few days, I've been listening to a lot of your videos and you say kindness helps when you're just trying to understand and judge less, learn more.

And I think from the autism world, just that lack, like no judgment, just try to learn something is huge. Huge in just disability in general, but especially autism. And so we're so thankful that you're with us. So first just tell us a little bit about your family. 

Rob: Thank you for having me. I [00:02:00] appreciate that. I'm a single dad to three autistic kids. My oldest is 25 19 and almost 17. They were all diagnosed as being autistic and just like different places, you know? Mm-hmm. on the spectrum. My oldest he was officially diagnosed in 2005. But he, he developed typically, and he was actually very advanced until he was about four years old. And then , it feels like we put into bed Gavin, and he woke up somebody completely different because there was just a massive global regression. And, , I don't know that it actually took place that quickly. I think it was more of a gradual process, but we hit like this threshold where you just, you can't not see it anymore. But it was, I grieved the loss of a child that I still had. It was that profound. 

Deonna: Yeah, I can relate to that. 

Rob: You don't fit anywhere, right? Because there's no where do you go to for support, right? Because you [00:03:00] have parents who actually lost their kids. You don't fit in there. No, because I'm sure they would trade places with me in a heartbeat. But it was almost like someone with like late stage Alzheimer's where they looked the same. They're, They're just not. And so we had to get to know him all over again. He lost a lot of skills that he had mastered everything that he was like super advanced in was gone.

And , that's sort of what started this whole path into the autism world. 'cause ultimately he was diagnosed with childhood disintegrated disorder way down the road. Which is a very rare form of autism. So I don't even think it's into DSM anymore, but he was officially diagnosed as being autistic in 2005. He was five years old when he was actually diagnosed. And then it's been a lot of health issues with him. He lost his immune system developed epilepsy, an autonomic disorder , where his brain would just stop controlling like blood pressure and body temperature and heart rate and stuff like that.

Had a wish granted in 2017 'cause his health was, pretty dire. Yeah, [00:04:00] my other two were just born who they are. It sounds weird saying it like that, but it's true. I mean, There, there was no 

Rhandyl: it wasn't as dramatic as your first Yeah, 

Rob: there was, there wasn't, it wasn't like. My youngest was non-speaking until he was about four. So like we knew something was going on there. And then he was diagnosed before my middle child Elliot. Because when I learned autism back then, it was what Gavin was. I didn't know that you could be in various places, 'cause I thought it was like diabetes where everybody experiences something the same way. So if someone else is diagnosed as being autistic, this is what is gonna happen. And so when my kids were turning four or five that age where he started to regress, I was getting really nervous and Sure worried but they just have always been the way that they are. Emmett started talking when he was about four and a half. Complete [00:05:00] conversational speech. Like he just started talking.

And Elliot has been who he has been forever. These guys, they've come a long way. They do really well. Emmett he's a junior in high school and he is just finishing up his freshman year in college. Oh, whoa. So he's got his last final exam today for his first year of college full-time. It's a big leap from where we were to, to where we are.

But I've experienced a lot and seen with the spectrum being as broad as it is I've experienced the bookends. Of it. Yeah. Yeah. The whole and, and learn to recognize what a lot of people tend to not recognize is just like how profoundly different every person can be especially the higher needs, , families that are really struggling, they tend to get forgotten a lot. Yeah. Yeah. Or dismissed because nobody wants to present autism as this , more difficult [00:06:00] side of it, you know what I mean? Mm-hmm. Like, they wanna, they wanna build it up. It's like a superpower and all this other stuff, which is really frustrating. Like for some people it might be, I would say probably Emmett, that would be a fair assessment for him and mm-hmm. probably even for Elliot, but not for Gavin, 'cause to me autism is what took him away. Because he wasn't that way and then he was I understand how. Families experienced this in different ways. And so 

Deonna: And that's interesting hearing that he has autonomic issues because my daughter who's paralyzed has those same issues like crazy blood pressure problems and heart, her heart can vagal and she can pass out and it can nearly kill her. And she has temperature issues and things like that. I've never really associated autism with some of these medical things, even though I know a lot of kids who have medical issues, but usually it's a double diagnosis. It's autism and then something else as well. You know,

Rob: It's kinda morbid something, but they've not, they've never [00:07:00] connected it for us. Yeah. Like we, we spent about a decade trying to figure out what was going on. And he had full, sequencing done and mm-hmm. everything that you can imagine done at the Cleveland Clinic and everything always came back normal. And so nobody has been able to explain. What has happened or why it's happened. Yeah. And then for the most part, he's 25 now, and now his immune system is still compromised. It'll that just gets worse over time. Doesn't get better. But everything else seems to have dissipated, as mysteriously as it entered his life. It's just been, it just kinda left no idea why or how, or, if it'll resurface. Yeah. Nobody could tell us anything. So it's a lot of unknown. A lot of unknown. 

Rhandyl: I can relate in that matter. Like I said, my daughter's undiagnosed and she'll have a few years where we're just [00:08:00] coasting along and then all of a sudden a. Something new or different happens medically and we're like, okay, what is this? Why is this happening now? She's a lot more stable than she was, six, seven years ago. But now it seems every few years something new will come about and we're like, okay. So there's always these peaks and valleys and a lot of not knowing what the future holds. I am glad that your oldest is, on a good plateau and that those scary things are It is, but it's one of those you don't know. You're like, okay, what's coming next?

Rob: It took us his specialists. He was on so many medications to manage all of this stuff. And even when he was in a balanced place where he wasn't experiencing a lot of these health issues anymore, nobody wanted to touch anything because they were like, we don't know. Yeah. Like [00:09:00] why? He was on salt tablets to balance his to help with blood pressure and stuff. All this stuff. And nobody wanted to remove anything because they weren't sure what they did. That actually, of course addressed the issue. And so it took us years to wean him slowly off. And it was like one at a time, over a six months period of time. And we're gonna wait. And if we're in a clear, then we will, we'll move to the next one and we'll do it again. I see 

Deonna: how that would take a decade. We've had that before where, the doctors are like, we don't wanna poke the bear. She's doing okay. We don't wanna play with anything because if you pull a med or do something wrong, she could take a dive. We've, yeah, it takes forever. But

I wanted to ask you, because you talked about he your son Gavin, getting diagnosed in 2005. This is gonna show how old we are, but I was in college in 2005. Facebook was just coming out. My kids, it blows my kids' minds that [00:10:00] I was alive, when the internet was invented and things like that. They just crack up. They're like, mom didn't have a cell phone. And but I tell 'em, I remember when Facebook came out, which was, I guess MySpace was the original social media maybe. But, but you know, Facebook was the big thing and you didn't have that. You didn't have what I have where , my kid gets disabled and I have millions of people that I could try to create some sort of community with, and I don't know what the climate was toward autism back in 2005. Tell us a little bit about what that would've been like. 

Rob: So there was nothing yeah. To, if you would look online, it was YouTube was a thing still, I think back then, barely. Even, yeah, you could find video clips online of Rain Man and stuff like that. That's what you would find. And . I was really struggling with the whole grief side of [00:11:00] things. And then having no one, I didn't know any other people who had any experience with autism. 

Deonna: That's what I was wondering. Yeah. 

Rob: And so I started writing what I thought was this private journal on a WordPress site. I was newer to the internet. Familiar. But newer. Yeah. And so I set up this WordPress site and I was using it as like a digital journal. 'cause then I could, write for my phone, which was really convenient for me and yeah. And I could just download everything and emotionally dump and not carry it with me. And I was doing that for, I don't know, a couple of weeks. And I started getting messages from people. And 

Deonna: Oh, like you didn't realize people were reading your blog, but they were No, 

Rob: I thought it was private. Oh, wow. Because I had to sign in to write. I thought you had to sign in to read. I thought I was the only person who could see this. That's not how WordPress works. No. This was back this is when it was first it was a new thing. Yeah. Yeah. It's not how, it's not how it works. 

Deonna: That's so funny. 

Rob: And What happened was, [00:12:00] because there was no one else doing that back then. When you would look up autism, you were directed to my website. It was called Lost and Tired at the time. 'cause that's what I felt like lost and tired. That's relatable and Right. That's what I thought it was, I didn't think it was, I had people complain that they thought it was like a negative connotation, whatever. But it was like, I think it's pretty, 

Deonna: it's real yeah. Yeah. 

Rob: And what happened was I filled this vacuum where no one else was doing this. Yeah. Everything that I was putting in there was being read by parents anywhere. Like when they would look up something for autism and yeah. I was mortified because I was like, I didn't want it in my head. They're not, it's not bad stuff. It's just the stuff that you were like, you were trying to just process. Yeah. Yeah.

And what I found was that people were finding comfort. And it was validating what they were experiencing. It was showing them they weren't the only ones out there who [00:13:00] were going through this stuff or feeling that way and I started thinking like, wow. That, that kind of feels good to be able to turn something that I'm struggling with into something that is positive for other people. And it's how I process. Things so it turned into this positive thing. And then,, as years went on, other people started to do the same thing or it spread into other yeah. Other things.

But yeah, there, there was nobody, there was no one doing that back then. And I inadvertently threw myself into the void on that. Yeah. But it's been a, very positive thing, I ended up creating what I needed when he was first diagnosed, if that makes sense. On accident and then, yeah. And then it filled that for other people. And it's just been, it's going on. 

Deonna: And it's always interesting when you're doing something and you don't realize it means a lot to someone else. And then someone comes up to you and tells you that something you do [00:14:00] is helping them go through something and you're just like, wow. I don't know. I didn't know that was happening. Or, I've had experiences with that too. I used to update everyone on what was going on with my daughter. 'cause it was real dramatic at first,. And then those updates turned into like me trying to explain what my life was gonna be like.

And now I, try to do these little devotionals. People will come up to me and tell me that those little videos mean a lot to them. And you just are like, oh I didn't even know, you know? yeah. So it's like cool when you realize you're contributing to someone else's healing or whatever that may be.

Rob: I always, I looked at it as like a purpose for the pain mm-hmm. kind of thing where not helping my kids wasn't important enough to me, but sometimes we can drown in that. Kinda get lost. I was a fire medic before all this stuff happened. And so my, my whole thing was like helping people was like my thing. And I ultimately had to give that [00:15:00] up to stay at home with my kids. And this became that for me. It became like a replacement for that. Where I found I could use what was happening in my life to, to help other people navigate what they were going through, yeah. And it, and I think it, it honestly saved me. 'cause I don't know that I would have made it this far if I hadn't had that, if.

Rhandyl: The community is very important. I feel the same way. I remember in the beginning of my journey raising my disabled daughter, you just feel so alone and so down and so isolated. And especially not having any answers. That was initially the hardest I found peace with that now. But, like you said, finding a community that can relate and obviously. That's why Deonna and I started this podcast a couple of years ago because we felt like it would be such a good [00:16:00] resource and an outlet. There's so many resources now, 20 years later from 2005.

But. At least for me, I felt like I was being reached out to by so many caregivers all of the time that were in a similar situation and I was always messaging someone, someone was reaching out to me and I felt really that was something that I should be doing more of. And so the thought of spreading awareness through this sort of platform it's been so inspiring for us and hopefully for so many oth other families. So I love that story, I didn't realize you were kind of like, that's the founder of the autistic, online community in a way.

Rob: Acci accidentally. Unintentionally.

Deonna: I think it's cool how parents of disabled kids can be so real with each other. There's, if a regular person comes up to me and is like, how are you doing? I'm like, I'm [00:17:00] fine. I just, whatever. But then if a parent of a disabled kid comes up to me and asks if I'm okay, I am like, oh, let me tell you. And I tell 'em how it really actually was this week, or how depressed I am about this or that, and, you know, they can take it. And so that's just such a special thing about all of us as we all can be there for each other. 

Rob: Or you can tell 'em you're okay. See right through it. See how 

Deonna: they know you're lying. 

Rob: They know you're lying. Yeah, 

Deonna: Yeah. They're like the real answer. Yeah. Okay. 

Rob: I don't do this anymore, but for the longest time I was so worried about making other people uncomfortable, right? You know what I mean? So I would always downplay things because otherwise people would just be like, oh my gosh. They wouldn't know what to say and then they would get uncomfortable and whatever. Awkward. And now it's you know what? This is what it is. Don't like it. Don't ask me a question next time. I don't, I, what, I dunno what to say. I just don't have 

Rhandyl: you lose your filter. 

Rob: You do. Or you become [00:18:00] more comfortable just not putting it in place. Yeah. You know what I mean? Exactly. You become a little more, yeah. That's. And that's what my opinion, but I just don't care anymore.

Deonna: We, we've talked to a lot of moms, but we haven't got to talk to as many dads. And that's one of our goals this year is to talk to more dads. Because like we were saying before this started, even though you're going through the same experience, I feel like men just sometimes handle things a little differently.

Not always, but sometimes. And sometimes my husband will be looking at me. Someone will ask us a question and I just tell them straight up the reality. And my husband's over there like, oh my gosh, you are really telling him like everything okay. 'Cause that's not his personality.

He's gonna be a little more reserved or not sharing as much. And then I tell it like everything, which that's also just our personalities. I'm more of a open book than him. But yeah, so I'm excited to talk today 'cause it's always [00:19:00] good having a dad's perspective. It's always just a little different, 

Rob: cool. Thank you. 

Rhandyl: Yeah. So to get back to the autism diagnosis in general, so I work with children. I do home health, physical therapy, and so I mostly see like early childhood. Kiddos. And so I do work with quite a few autistic kids. It's usually in the early diagnosis or like prior to diagnosis and then see families in that initial stage.

And I see the impact that it has most of the time I'm there because of gross motor delays obviously. So a lot of autistic kids don't necessarily, I don't necessarily see, but there, if there are delays and then they usually catch up pretty quickly and then I don't. Treat them as long as say, OT or speech. I do see a lot of the initial diagnosis type situations, all the testing and the loopholes that they have to get through to find to get the [00:20:00] diagnosis. And then once they do, I see now, at least in this current world, that once they do have the autistic diagnosis, so many more resources open up for these children.

But my daughter, she's in second grade and she is in a special education class, and the majority of her classmates are autistic. Most of them are nonverbal, but some aren't. And so I'm around that a lot. And I have over the last, probably since she started school, five or six years and then of course with my career, I'm more aware of autism and the toll that it takes on families, but also the diagnosis in general and how broad it is and the misconceptions.

And so I am excited to get into some of that with you as a caregiver. 'cause I'm just an outsider looking in. But I do [00:21:00] see I'm in homes with families that are mostly getting the initial diagnosis and then how they start to deal with it at that stage.

And then now your children are grown. And I know there's probably resources now that you're like, man, I wish that would've been there a decade ago. But, such is life. But,

Deonna: so walk us through just how you felt when he got the autism diagnosis. What were your feelings about that? 

Rob: I felt like my whole world imploded. And it didn't actually change anything, which is the weirdest thing. It doesn't change anything, getting diagnosis, but then it, at the same time, like it changes everything. I was very emotional. I was, I cried a lot. All of that stuff. And then I became with him, I became very resolved to figure out what happened so that we could undo [00:22:00] it. That was my big thing for him. And only because like he was a different person for four years and then something occurred and then that person went away. And he also had this s thing, we would just call it fever effects. Whenever he would run a high grade fever, all of his symptoms would go away. And the Gavin before would come back, oh, oh my gosh. And then soon the fever would go away. He would go away. And so there's a whole, that's why weird. And it's like a documented thing, inflammation or something like that. I guess they, they say that they're not really sure. And so, so that was like, that was like torture. I can only imagine you would, every time it would happen, it would just remind you that he was still in there somewhere.

And so I just became very determined to free him so that he could be out all the time, if that makes sense. Yeah. And eventually it just stopped happening. And then he just, is who he is, and he's amazing. [00:23:00] He's done, he's come so far, but it was a very difficult journey

Deonna: yeah. I can relate too. 'cause my 4-year-old was a typical child and then all of a sudden, bam, she's a totally different person. And I had a lot of people saying, you're just so lucky she's still with you. You need to be grateful that she's alive. I obviously was grateful that she was alive, but I was like, my kid died in my eyes.

Like she is gone and I have to figure this out with this new kid who's highly anxious, is worried she's going to die all the time. Like it was just a huge change. And most people didn't understand that, you don't get this funeral for this kid who's changed. It's just you have to have a mourning in your own mind and then move on and keep going, 

Rob: did you feel too like for for me it was like, I felt guilty for a lot of reasons with [00:24:00] him because I didn't know that's the all. Yeah. You know what I mean? I didn't know, like I have this memory, the last memory that I have of him before everything happened was we were, I came off a shift. I was like, on a 72 hour shift, I was tired. And I took him fishing at the park down the street and he wanted to stay longer and then play on a playground and he liked to chase the ducks or the geese . And I was like, oh man, like maybe tomorrow or , later later this week, whatever. I'm tired, I need to go home and go to sleep. And that was the last memory that I had before whatever happened. Mm-hmm. And I lived with this guilt for so long. Like why couldn't I have just spent five more minutes? Like, why couldn't I have just done this? Or why couldn't I have just done that? And. Who's gonna guess that? Something like that's gonna happen. Of course. And but you still feel that guilt oh, yeah. Apparent. And I think a lot of [00:25:00] that, a lot of the guilt is part of what drove my, fuel for trying to get to the bottom of what had happened. 'Cause I wanted a name for what it was. I wanted them to identify what it was so that we could attack it. Because I, viewed him as being a prisoner. Who's imprisoned by something. Mm-hmm. You know, but

Deonna: No i, I get what you're saying. I think the most dangerous thing anybody can ask is what if I had done this or whatever, 'cause I lived with super bad guilt for years. It was my fault she got hurt, blah, blah, blah. It sounds stupid and I've, I know what you're saying about wishing you'd stayed a few minutes longer. 'cause there's things where I'm like, I wish I'd been playing with her that morning.

Instead, I was like, doing all my busy mom stuff, and just like stuff like that. And I know, Randall, you've said the same stuff about even just your pregnancy. What did I do wrong? What if I had done this? It's like we all blame ourselves and ugh, it's so bad. But it's human to feel that way. I think [00:26:00] 

Rob: it is very human. That was, that's what I learned over the years was that, we're allowed to feel whatever we feel. I was very open about my kid Gavin especially, would drive me crazy, just drive me nuts, me nuts. And I would very frustrated or angry at times like that and people are like, how could you say that about him? He can't help it. I'm like, because you're not living with him. You don't know what it's like. Yeah. 

I'm human. I like, I don't, I used to feel guilty for that stuff and it's like why? Because even if this hadn't happened to him, he would still be eliciting those same emotions for me anyways. Yeah. Like why in the world we want him to be treated just like everybody else. We need to let him be just like anyone else and kids drive their parents crazy. It's their job. We did it to our parents. Why would a diagnosis preclude him from that same rite of passage, right? Exactly. 

Deonna: Oh, I get like sometimes at night , my daughter's developed like very meticulous bedtime routines at this point. And I think it's her way of trying to control a situation. I have to be a part of it. Like she [00:27:00] wants me to do it all and it's very meticulous. And if I don't do it correct, she wants me to do it again or or she might have me fix her blanket.

Eight, nine times or something like that. Mm-hmm. And the other day I walked out and was like, I'm done. And I told my husband, you gotta go in there. I can't do this. She's, driving me crazy. And my nurse was just looking at me and it, I was just like, she would've driven me crazy no matter what, but oh my gosh. I have to get outta here. She's driving me nuts. We all have limits, but they're normal kids who are going to drive. I, I don't know.

I think the world has a hard time when, me or Randall get onto our kids. It's oh yeah. What? You just got onto your disabled, fragile child. Yeah, they're being a stinker. Like they're gonna be in trouble. Like whatever. 

Rhandyl: Yeah. I try my best to not treat my daughter any differently than my typical son. Because she's my child and. I'm taking the parent role and I expect her to behave [00:28:00] the way she should. To the, within her capabilities. Yeah. She has, yeah. Cognitively. And yeah, I think a lot of people from the outside looking in don't understand that. We want our kids , to be treated like humans, like typical kids, and I treat her that way and I expect other people to as well, to a certain degree capacity. Yeah. Yeah. Yeah.

Okay. So Rob, how do you, and did you, they may be totally different, handle the stress of raising your three autistic children? 

Rob: I think, I poured myself into the writing part of things, right. so I was writing a dozen times a day at times. I just kept going, yeah. And for me, like the stress was different. I was used to high stress things, like I, running into a burning house. That's true. Pretty stressful. Making life or death decisions for people in the [00:29:00] back of an ambulance, that's stressful. This was like a different type of stress.

So I think that sort of helped me to condition myself to handle it. Mm-hmm. A little bit better. I feel like, like my body absorbed a lot of that. This used to be red, like all white. I tell my kids it is a hundred percent their fault all the time. Oh, yeah. You guys, it's a hundred percent. This is all you guys. I didn't have anything to do with this. But I just tried, I learned after burnout a few times. I had to make myself a priority in order to sustainably maintain everything, yeah. And when their mom left and it was just me and them I had to kinda relearn that again because now it was, I'm all they have.

Deonna: So like when did that happen? Like, how old were they? 

Rob: To me it felt like they were older than what they were. Yeah. . I think Emmett was like six. [00:30:00] Oh, okay. And Elliot would've been eight. So it was a while back. Yeah, it was. It was a while back. Yeah. Yeah. So then you have all the dis disability stuff on top of trauma and Sure. Post-traumatic stress. And then where does one end and the other begin? And it's but I had to learn to make myself a priority. And 

Rhandyl: it's so hard though, I know as a caregiver and a parent, it's so hard to prioritize ourselves. 

Rob: It is, I had some, I heard this, somebody say this not too long ago any one of us would die for our kids, but would we choose to live for them, right? Mm-hmm. Mm-hmm. And , that was really profound. Like moment, yeah. And, so I do my best to, to take care of myself. Like all those videos that you were talking about, like they're all shot, most of 'em are shot like in the parking lot of the y as I'm willing myself the energy to go in and work out again. Yeah. And it's just become an outlet that, [00:31:00] that allows me to, it purge all the negative energy and stuff like that. But it goes through like phases where I have the energy to do it. Then I, lately I haven't, so I just, I go walking in the morning now.

Deonna: I think working out, my husband has, latched onto that as a way of getting through the stress of it. And I think for a lot of men, a lot of dads, it's like a twofold thing. Especially parents who are having to either, hold onto their kids sometimes if their kids are trying to get away.

Or I have friends whose dads are constantly having to run after their kid who has autism 'cause their kid just runs off somewhere or something. And then my husband we're having to lift, my daughter all the time. And so it's like you're doing it to release those endorphins and have a stress release, but then at the same time you have to do it because your kids are only getting bigger, they're only getting stronger, and or heavier or whatever it may be.

And you have to be that as the dad. 

Rob: Have you seen that [00:32:00] commercial where , an older gentleman, like a grandpa, and then there's like a dad and they're doing like these weird workouts at the gym and people are looking at, I'm like, they're weird or whatever. And then it pans over to their everyday life. And it's the dad doing squats on one leg because his disabled son, that's how he lifts him in and out of the pool

Deonna: i've even seen moms lifting just the bar with weights, right here in the curve of their elbow, which has to hurt. But they're doing that so that they can practice weight. That feeling of the weight, like in your elbows, instead of in your hands. 'cause that's not our reality. Our weight is in our arms, not our hands, so Yeah. I've seen those. Those are cool. Yeah. That's good that you have something that you can look forward to.

Rob: Yeah. Well, And when I went through my divorce and I was in therapy 'cause I thought like I have to get myself put together. 'cause I was devastated. Oh, that would've been so hard. , My therapist told me that I had to be selfish before I could be selfless. [00:33:00] And that changed my whole perspective on everything. Because I hated the analogy of put the oxygen mask on first, that kind of thing because, I dunno, whatever, but yeah, I know selfish before you can be selfless like you have to have before you can give. And now I view self-care as like the kindest thing I can do for my kids because it gives them the best version of me possible. And so then, it, you can kind of, reframe it in a way that kind of motivates you to go, or in on days you don't feel like going for yourself. It's oh, I gotta do it for my kids. And you can guilt yourself into going and as long as you are doing something positive, it all pays off, yeah. It just, you'll have to get there. 

Deonna: I do know what you were saying though, 'cause after my kid got hurt, I felt really guilty that I could still move and that she couldn't. So I found myself just sitting next to her for years. Like I was too afraid to have her see me even roughhousing with my son or working out or anything because it felt like I was betraying her to [00:34:00] do something physical because she couldn't do it.

And then I started to realize if I don't do physical things, I'm going to. Not be able to take care of her. And but I mean, yeah, guilt is seriously strong and I feel like men feel that guilt. They just may not express it the same way a girl does all the time. Yeah. It's nice hearing you say that 'cause it is affecting all of us no matter what.

So what would you say is the hardest part of raising a child with autism? 

Rob: Honestly I don't know any different because it's the only experience I have. I'm the oldest of six. Oh, wow. So I remember what it was like for me growing up. So like I have that frame of reference with my siblings, but I really don't have a frame of reference of having neurotypical kids. And an autistic kid and be able to weigh. The challenges, but yeah, for me, I think a lot of it was just trying to navigate what was within their control and what wasn't. Because I used to write off [00:35:00] a lot of things because oh, they're autistic. They don't know what they're doing, or they didn't. They have adhd, they can't help it,, we just allow that to get my pass on this stuff. And then I realized that I was raising their diagnosis more than I was raising them as kids. Oh yeah. Then I remember my youngest looked at me one time and he is like, dad, you can't, do that. I have autism. I'm like, oh, okay. Oh boy, 

We're gonna, this is not happening. We're gonna have to, we're gonna have to fix this. So 

Deonna: it's not funny, but it is that he said that it, 

Rob: it wasn't funny then. It's funny now because oh man, I tell people that all the time. You've gotta, just because our kids have a disability doesn't mean that they're not. Accountable for their actions, we can't, right? Yeah. We don't bite, we don't hit, we don't hurt people. But knowing what is within their ability was tougher, right?

Because I never wanted to hold them accountable for things that they had no control over or were outside of their control because that wasn't fair. But I think I spent too much time making sure that I was never holding 'em accountable for things mm-hmm. because it felt like their life was hard enough. [00:36:00] And then when their mom left, then it was like the guilt for everything just added on top of that and trying to overcompensate, because I know that they were going through a lot and trying to all that, 

Deonna: and your role, your role was changing whether you liked it or not, 

Rob: yeah. And, honestly, I. And this is the first year actually that I've been like talking about this stuff. 'cause I haven't really talked a lot about it over the years. 

Deonna: Yeah, that's hard. 

Rob: I realized that it was actually easier in a lot of ways when I became a single parent uhhuh, because I was already doing everything that I am doing now.

Deonna: Oh, it wasn't as much of a role reversal as like No, it was, you thought it was gonna be. 

Rob: Yeah, but I was thinking because, now I'm by myself, it's gonna be so much harder. But what I realized was , part of why it was so much harder was because I was the only person doing this stuff.

And there was someone else who could have or at least [00:37:00] contributed Yeah. And wasn't for whatever, various reasons, but, knowing that I'm on my own. Like it just made it easier, if that makes sense. There isn't that 

Rhandyl: That added pressure or you do, you a situation versus Yeah. It was almost 

Deonna: like I was struggling with resentment, like that maybe could go away a little bit. 

Rob: And it was like, there was a fourth person that I was taking care of Yeah. Home. And I didn't recognize it because I didn't see any of that stuff. Like when I was going through it. 'cause I would've, been there forever. I would never have. Yeah. But yeah. The hardest part, I don't know that there's really a hard part one more than the other. I think it was circumstances and everything were just very challenging and having multiple kids and. None of them needed the same thing at the same time. 

Rhandyl: That's what I was gonna say. You were trying to, you have three autistic children and there are not, obviously they're on various, all different, of the spectrum. And like you said, trying to not just play it off as, oh, it's because they have autism, trying to find what they were [00:38:00] capable of. But then I'm sure all three are completely different in their capabilities. And , I cannot not fathom you have to treat each, I mean, you in general, you have to treat each different Totally different. Find your kids are different in their different ways. Yeah. But this is on a whole new level. Like, 

Rob: well, It, sensory stuff was different for everybody. They would only, they would each wear different types of clothing or some of them would not like to wear clothing at all. And it was three different meals. Every time. Oh my gosh. And then each one might have to be remade multiple times because chicken nuggets looked funny. Or they saw it was discolored or it didn't taste the same as it did the last time. There's all these different things. And there was never one thing that I could, little Caesar's Pizza. I dunno if you guys have a little Caesars pizza down there, but 

Deonna: Yeah. Oh, $5. Yeah. Yeah. 

Rob: It's not $5 anymore.

Deonna: Oh yeah. It used to be. I know I went by there recently and was like, wait, it's more than it used to be. 

Rob: That is the only thing that I could get them, , that all three of them would eat. [00:39:00] They'd all be happy that, so that was being hungry. It's guys, we're gonna just do yeah. Little Caesars, because otherwise Yeah.

Rhandyl: Dad's had a bad day. Or Little Caesars. It is. It's 

Rob: when you do something for one kid and then it triggers the other. Yeah. Yeah. Like the need conflicted a lot of times. So that was probably the, oh, that would be, they weren't like copies of each other. No. 

Deonna: Ugh. I appreciate you talking about, your marriage and everything. 'Cause I know that's probably really hard. But, we've talked about this before. 'cause I think sometimes I think about other parents who have typical kids and I don't know if y'all ever had the thought, but I think in my head, if their child had something happen to them or had a diagnosis or whatever, I don't know how they would handle that.

It would be like, it wasn't their personality, but I think a lot of parents say they're my kid. I'm gonna, I have to do this. But like a lot of parents choose not to do this. They just are like, I can't do this. And it is actually a choice. I know that sounds [00:40:00] insensitive, but it is a choice to stay and do, to do what you gotta do for your kids. And it's, it ain't easy. 

Rob: That's a good point because I don't go into the details about stuff that she did and whatever. Yeah, no, I get it. But I sum it up as basically she made different choices. She made one choice. Mm-hmm. I made another. And her choices took her away. Mine kept me with my kids. Mm-hmm. And it's unusual. 'Cause normally the dads are the ones that will take off. So like most of my audience, probably 80% of my audience is moms. And it always happens. Mm-hmm. Yeah. Because a lot of what we experience is very relatable and

I I did this article once where I talked about being the male version of a single mom and, and it was acknowledging, like I had no idea what single mom had been going through for all this time. I don't know how you, you did it. It's crazy, like and I had this really nice mom reach out and write me this big long letter about how I'm right. [00:41:00] That's, I'm a male version of a single mom, but I have all the male privilege. And I was like offended at first, 'cause I didn't understand what it meant. Yeah. And then it's like, oh, you're a hundred percent right. Because I'd get accolades for every little tiny thing that I would do with my kids. If people would see me with my kids out in public, they'd come up and literally like pat me on the back and be like, oh, it's so nice to see your dad spending time with his kids. I'm like, do you want them have them all the time? I'll loan them to you for a while break. I don't, there's no visitation. Like I have them all the time.

And and I would get offended by that because like why would, that's a lot of times that's how it actually, yeah. And then you have moms who are doing all this stuff. And you never hear a peep. Nobody complains, but they just do it because it's expected of them. And you. It is a choice to Yeah. To do all this stuff. Yeah. But it's just it's bothered me and it's given me that perspective that like moms are in a whole nother league of parenting. Like they just do and do and do and do, and they don't get enough credit, [00:42:00] overworked, underpaid all that stuff. And if I did even a fraction of what you did, people would just shower me with praise, like I was mm-hmm. surprised that I'm capable of doing those things or whatever. That was a hard part too, actually was, but that's more, I, 

Rhandyl: that is ing such a weird dynamic. Yeah. Yeah. 

Deonna: I, I remember the first time after Allie got injured, I went on a trip with my friend and we left town and everything and when I came back and shared a video of how I had left my daughter, I got a lot of hate. And they just said, I can't believe you left her with her dad. I would never leave my kids with. And it was people like who don't have disabled kids. 'cause otherwise I think they would've understood. But and it actually, it made me feel like crap. And then my husband was like excuse me.

I have learned her care exactly the same as you. I am the same as you. As far as like my knowledge. Why are they acting like [00:43:00] I'm this idiot who's, Yeah. Taking care of Ali. Like she, and I remember that feeling of how just gender biased everybody is towards everything. Mm-hmm. But it was funny 'cause yeah, if I leave my daughter I don't have to say a word to my husband and Randall's the same way. You're just like, bye, I am leaving for the weekend. See you in a couple days. Don't call me. But then like, you know, it's, that's not every woman's experience I've come to find. And, so Yeah. It's interesting that you have that perspective of it. 

Rob: So that's, it's a, it's a flipped sort of dynamic on my end. Yeah. Yeah. It's very interesting. But it's given me a lot of perspective that I always try to share with people. Like moms do things that are amazing. Like amazed and you wouldn't always notice a toll that it takes on them, or how tired they are. They just do it and we don't say anything because it's like, as a society, we expect them to do that. Mm-hmm. Right. Which is so messed up, I because Yeah. No, it's when, yeah. Yeah.

Rhandyl: No, it's just [00:44:00] the way that. Our society has, especially, , us in the south. I think it's getting better definitely than it was when we were growing up the role that fathers are taking more of the parent role. But yeah, I totally get what you're saying and I appreciate your positive thoughts. Oh yeah, I just on moms and 

Rob: just call how I see it, not a 

Rhandyl: Okay, so I'm assuming in 2005, you probably didn't have any idea about autism or what that was No. Or if you did. Yeah. So could you, 'cause it is so much, more common or just more. Talked about now, thankfully , some misconceptions that come along with autism.

Rob: The whole, like autism superpower thing, we talked about that before. Like not every autistic person is a savant. Or have that type of skillset, like everybody's different. , But [00:45:00] there's a lot of assumptions based on old stereotypes. Drop the toothpicks, they know exactly how many are on the floor. It's not like that. I mean, Maybe for some people, but not. Not everybody but probably the biggest ones are, like they don't experience empathy, which is just not even close to being true. 'Cause a lot of times they experience it more profoundly than you or I. Like, they can't make friends or they don't have friends, or they don't want friends or they don't wanna be touched or they don't wanna have, affection or whatever. And that's not always true either. Some kids it is, some kids it isn't. But I think the biggest misconception is just assuming anything. Because we wouldn't, we don't assume things about like neurotypical kids. Right. Like that, every kid is unique. They're not all gonna fall into that same stereotypical thing where they don't like socks or shoes or that kind of stuff. Yeah. I. 

Rhandyl: I think about the assumptions and your kids have all gone through grade school and some high school [00:46:00] and college beyond. Yeah. It's I'm sure the education system, I know just from my experience there's so many assumptions that come along with autism and education and it's getting better, but I know that for the autism spectrum, there's so many kids that are, they're either one in gen ed or two in special education, but there's like this gap, where some of the kids say in the middle. There's just not a good fit for them. We've talked to another mom that was in this situation with her autistic child and she ended up homeschooling and it's been this great thing, but how was the education system with your sons.

Rob: They were in a public school system at first and it was an absolute disaster. Gavin was put in isolation. He would, he used to come home telling us so Gavin, I adopted [00:47:00] Gavin Gavin's not my biological child. They all have the same mom. And I. raised him since he was a year old. Wow. But there was a custody battle on that end for a while. Mm-hmm. And, Gav would come home from school and he'd be like, oh, I gotta go to the beach today. I'm like, oh, good for you, Gavin. That sounds like a great thing. And there were never notes sent home necessarily or anything like that. But come to find out that the beach was a closet that had a poster. And. it was a picture of a beach and when he would've a behavioral issue that's where he would go. Right. Oh my gosh. 

We, we just pulled him out and found, a charter school here that specializes in like autism, A DHD, and other learning disabilities. And so we, we stuck him in there. He struggled for a little while, but then ended up doing really well. The other two started out in public school system, and the public school system here was a disaster. They all ultimately ended up going to the same charter [00:48:00] school, which was very positive. Good for them. They did everything around martial arts, so they taught the kids how to control their bodies and Yeah. Stand for themselves and all of that stuff. And it was really positive.

I probably kept them in there too long. I probably should have tried to mainstream the two youngest earlier than what they did, but. I didn't know any better. They were happy where they were. They didn't wanna be moved academically. They were, doing amazing.

Emmett's first time really being mainstreamed is college. Wow. You know, I mean That's Elliot's first time was probably, I think his sophomore year in high school. Mm-hmm. Okay. You know, And then Gavin was, I had to pull him out his freshman year because of his health. Yeah. Collapsing. And he was constantly being hospitalized and there just wasn't worth, oh my goodness. But yeah, I mean, the education system can be a difficult [00:49:00] thing. . Oh, yeah. Oh, for sure. 

Deonna: We've experienced that a couple times. 

Rob: Yeah. But with the charter school that they were in, everything was built in, they, their IEPs ended up falling off a couple years after they got there because the curriculum was so accommodating as it was. They didn't need, additional help and support 'cause it was already built into the oh, that's great. 

Deonna: Yeah. I love that they did martial arts, like my son did jujitsu for a while, and I can see how that would be really good for a lot of different disabilities because they make you do things in a certain way and it's very respect oriented, but you also get to fight with your friends, so it's like fun. 

Rob: Um, Breaking board ceremonies and Oh yeah. Stuff. And it was, there was a lot of symbolism behind it. Uhhuh, it was all about them up and building character and confidence and stuff like that. So it was a very positive. That's cool. 

Rhandyl: Okay. So Rob, what brings your children joy? Obviously, I'm sure different things with each one, but we just [00:50:00] would like to know, their interest and their favorite things. 

Rob: I would say spending time with me, number one. Number one is not, yeah, I've been bumped. Gavin is very into video games. He always has been. He's got a job now. He moved out a year and a half ago. Wow. Ish. Good for him. Yeah. That's a big deal. He's very much into finding his independence and all of that stuff, and he is doing really well.

Elliot is very into, into gaming. He is doing a lot of stuff with Minecraft and doing oh, yeah. His own mods and coding and stuff like that. He's also very passionate about photography. He's been recognized for some of his photos. He opened up a photo store where Oh, wow. Wow. People have been asking for prints of the stuff that he takes. He does a lot of nature stuff. That's cool. So we're working on building that up.

And Emmett has always been about learning. Like he thrives. He's the a DH ADHD kid that doesn't need [00:51:00] medication at school because his thing was learning. Yeah. It was at home that it was like a nightmare for the rest of us. Um, He thrives in that type of environment and he's. Made his way. He's in culinary is his main focus right now. Oh, is cooking. That's cool. It's he's so good at that stuff. Like I Wow. Eating out at restaurants and things like that. Now it's I'm spoiled because it took so much better most of the time. Nice.

Deonna: I need to push my kid in that direction so he can take over, cooking for me.

Rob: He's the, he was the kid that ate three things. 

Rhandyl: I was gonna ask oh my gosh. And now he's going, now he's just a culinary expert. Yeah. 

Rob: We just started with how having him like helping with cooking and just experimenting and stuff like that. And then during covid is when a lot of the stuff picked up. We were on lockdown for 15 months. 'cause Gavin's being imunocompromised , so it was me and the three boys in a house by ourselves 

Deonna: I like it when your kids come into the videos. I saw one the other day where one of your [00:52:00] sons was saying he hates microfiber. And I'm like, I hate microfiber. Like whenever, like the dusting cloths and stuff. I was like, I totally get it, dude. Oh yeah. It's horrible. He's, that made me laugh. 

Rob: He's, yeah he's, he's so good. He's very charismatic. He likes to share his experience, so we got a lot of stuff planned. But it, it's, they each have their thing, right? Yeah. Yeah. All three of them like video games, but there's some that like them more than others, you know? 

Deonna: did they like the Minecraft movie? 

Rob: Yes they did. Okay. They didn't think they were gonna, I took Kelly and Aria and their grandma to. See the Minecraft movie when it first came out. 'Cause Aria's an obsessed with Minecraft. Yeah. And the boys wanted nothing to do with it because they're like, we saw the trailer, it looks stupid. And I was like, you know what guy? Like it's actually really good. Yeah. And so we went the next day and they really enjoyed it. Oh good. Yeah. 

Deonna: So my son plays Minecraft and my daughter's just now getting into it. She has a [00:53:00] Nintendo controller where she can do it. Nice. And yeah, they've been screaming chicken jockey around our house. I'm like, okay, please stop. Please stop chicken jockey. But I didn't know that. I didn't know how the game works, so I kept having to lean over and be like, what's that? What's that? And my son's like, just stop asking me. I can't explain everything. That was definitely made for people who play the game. Like I didn't know what anything was, but it was fun. 

Rob: Yeah they all have some similar likes and dislikes and, they have their own kind of path that they're going down. It makes, yeah. 

Deonna: That's cool. As we wrap up, we just wanna know what you feel like is the best thing that has come out of being a dad to autistic children?

Rob: Oh okay. So I'll be, I'll just be really honest with you. So my my kids obviously are the best thing that's ever happened to me. Yeah. But probably the best thing that's come out of the autism side of things, [00:54:00] honestly, was probably while I was definitely meeting Kelly because mm-hmm. We connected a couple years ago. When her daughter was diagnosed, aria was first diagnosed. And that was life changing for me. That's the biggest thing. Yeah. For me, she has an understanding, and everything. Yeah. I never have to explain myself. I don't have to. We just get it. And when you're in a position like this, because like when I was on my own with my kids, I thought I'm gonna be forever. Who's gonna of course. Wanna take on this challenge, right? 

Deonna: We've all had that thought. If something happened to our husbands, I think for like, well,

Rob: it's a lot. It's a lot. And but she changed my whole life and. The only reason that we ended up connecting was because she stumbled across the stuff that I was doing and needed help. Right. That's cool. And then we found out that we live, I dunno, 20 30 minutes from each other. And then it's just been every day [00:55:00] ever since. Wow.

Deonna: So did she like slide into your dms on Instagram? Is this how this happened or, I want details. 

Rob: She had reached out to me on, we've connected on Facebook and I get messages from people all the time. Oh yeah. 

Deonna: Because I was gonna say, I bet you do. 

Rob: I can't keep, I mean, I can't keep up with 

Rhandyl: No we're lucky you saw our message. I know. 

Rob: I, because I don't see them very often. Yeah. Honestly, But for whatever reason, I don't know, there was just. Yeah, it was just different. That's cool. Oh yeah. Best friends. We've both been through a lot, so we appreciate each other. And she's been in education for, she was in 20 years. Oh really? She has helped with the kids navigating school and picking up on things that I had no idea was even a thing. Yeah. We play to each other's strengths and it's just a, it's just a very positive thing. And the kids now know what, like a mom is supposed to be like. [00:56:00] Yeah. Mm-hmm. You know, So it's, it's 

Deonna: well, and they get this little sister experience and that's, probably fun for them. Yeah. Does she like gaming too? She's, oh. Your Aria, 

Rob: aria. Aria is obsessed with gaming. Yeah. We play Minecraft for fortnite like almost every day. 'cause she'll play, see? 

Deonna: Yeah. I'm trying to get my daughter into Fortnite so she can play with her cousins and brother. But my daughter's rolling into Roblox Minecraft. She's the same age as Aria. 

Rob: They can play Minecraft. We play Minecraft online together all the time.

Deonna: Yeah. Yeah. It's, gaming is such an important thing, I feel like, to disabled kids. It just, connection is their way of playing. Mm-hmm. And it's not, they can't go run outside and play sometimes. Not all of them can and some of 'em don't want to. Gaming is their happy place and their safe place. , We play Animal Crossing and that's my daughter's, place. It's like where there's no problems in animal crossing. There's no, stress or anything, and she just write a wrong thing to do. You just, [00:57:00] yeah. Run around. She loves it and I honestly love it too. I'll get on there sometimes and work on my house, 

Rob: but I find that with Minecraft, like I, I build, I just will hide out and I can make my house might be a mess in real life, but like my Minecraft world can be like uh, perfect, perfect. Everything is goes, everybody puts stuff away when they're done. I know. I, it's like my, it's my like sanctuary sometimes it's just kind of escape. 

Deonna: Yeah. No we totally get that from our house. We do. If Aria ever needs a Roblox buddy or something, Allie will her. She's just getting, she's find her's 

Rob: getting started. Roblox has just been on her radar. 

Deonna: Yeah. It's kind of fun. It's a fun one, but thank you so much for talking. It was really great for me just to learn more about your kids and just autism in general, and we're just so thankful that you took time out of your schedule to talk to us today.

Rob: Thank you for [00:58:00] having me. I appreciate it. It is so nice this is the epitome of the connection that parents raising kids with disabilities have. All of our experiences are different, right? I don't know what it's like to walk in your shoes or your shoes and Right. Vice versa, but there's so much that we have in common. Even though our situations are different that it just bonds. Yeah. There's a bond that we can like just have a conversation like I can have with you guys that I couldn't have with just some random person. Mm-hmm. Sure. Who doesn't know what it's like to kinda live with that fear and that all of that stuff. Stuff flight your parents. Yeah. It's always great. Yeah. 

Rhandyl: There's a connection there that's, it's indescribable, so 

Deonna: Yeah. We all become fast friends, that's for sure. We're village 

Rhandyl: Thanks so much Rob. I enjoyed this conversation so much and we will put all of your social media Sure. Tag you in our show notes and , 

Rob: built everything around you can. Just theautismdad.com mm-hmm. I built my own and everything perfect on my site so [00:59:00] that they'll find everything just by going there. 

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.