Episode Warm Up And Context

SPEAKER_01 0:00

It's the journey made with Pod Hypod.

James Guttman 0:05

Hi Pod, it's James Gutman. It's High Pod I'm Dad. Welcome back to another edition of the show. I am a little I don't know, congested. It's October. Maybe you're congested too and you don't even hear it. Maybe your ears are clogged. And that, combining with my congested voice, sounds normal. In that case, welcome back to the show. It is another edition of High Pod I'm Dad. You may have found me in any streaming service. Thank you, Highpodom Dad.com. I am there as well. I love doing these podcasts. I think about this because it gives me the opportunity to talk out loud, think through situations, and understand really what I'm thinking and how I feel about things. Sometimes I discover them as I'm talking during these podcasts, which um I don't know, that's weird. Maybe it's weird, but I like that. I like to think out loud, I like to understand things.

Unpacking The Fear Of Silence

James Guttman 0:51

And the blog I wrote on Monday was very much about that. Uh, it was a blog, again, about my son, Lucas. He's 15, he's nonverbal, he has autism, uh, has never consciously said a word. And when he was a baby, that was my biggest fear, right? When he first started getting diagnosed and he was going through all his delays, I kept thinking, oh my God, how am I going to live a life with a child who doesn't speak any words at all? To me, that was the ultimate. It couldn't get any worse than that. Which is why it's surprising that the blog title this week was My Biggest Fear Wasn't That My Son Would Never Talk. It wasn't. And it's a kind of article, when you do a headline like that, you imagine that reader reaction for those who aren't reading it yet, are going to be like, What? How does that make sense? And here's the crazy part. If I can go back in time with that time machine that I talk all the time on here about, then my God, if we had one, what would we do? What kind of stocks would we buy? If I had that time machine and I went back to 2013, 2012, and I told myself, hey, one day, your son is never going to say a word, and you're going to write an article about it. And your headline is going to be, My biggest fear wasn't that my son would never talk. I would be like, that guy's a moron. Because I'm here. It's 2012, it's 2013. I have a one and a half year old who is showing all these extreme signs. My biggest fear is that he will never talk. But let me walk you through this. You ever have one of those situations where even as a kid, you'd be like, I'm afraid to play baseball because I'm afraid that I'll miss. And you go, what are you really afraid of? And it's like, well, I'm afraid, you know, that I'll miss the ball. But what's the what are you really afraid of? I'm afraid that the kids will laugh at me. I'm afraid that no one will like me. There's always a reason behind the reason. There's always something beyond that superficial idea, right? So like none of us are afraid to really speak in front of a room of people. You're afraid that you're going to mess up and that people are going to judge you and they're going to like make fun of you and laugh at you and talk about you. There are layers and layers and layers to our fears. And when it came to Lucas, when it came to my son, on the surface, the biggest fear was that he would never talk. I thought about this. I was like, you know what? I could take anything else. Anything else. If he didn't walk, if he didn't understand things, all these things I told myself were so much more important than language. And here I am now, 15 years later, looking at life, looking at what we have. And I can tell you 100%, language is a big deal. Don't get me wrong, right? Um, when you have a kid that doesn't speak, it's immediately apparent. When I first started writing these blogs and I learned about autism, I learned about the spectrum of it and different people who were on it, I would read people who would say things like, I had to come out as having autism to my friends. And I'm like, oh, my son is never going to have to come out to anybody. You know, you meet him, you know. He doesn't say anything. When he does say something, he's excited, he'll jump. He gets, you know, very into things. And if you know him, it's adorable. If you don't know him, it could be adorable, but also it could be scary as he's getting bigger. So somebody um near you who's reacting the way he does to certain things, and you don't know why he's doing it, it could sometimes throw you for a loop. I get all that. But it's not about language. It was never about language. And I've told the story about right after, um, not right after, but around the time that he was first getting diagnosed, and I was coming to grips with the fact that he might never speak, talking to someone who told me that her son at 17 had some words. And then I ran into them and I saw that he had words, but he didn't really understand the words he was saying. He was just saying words out loud. And that was the first time where I realized, like, oh, oh, okay. Maybe it's not about saying a word, right? Because keep in mind, my son stims on things. He gets excited about something, he'll watch a show over and over again, he'll do a movement over and over again, he'll clap over and over again. So if he were to have a word or two, there's a good chance that his words would just simply be um, you know, something where he repeats it for comfort, not necessarily using it for what it's used for. And

PECS And Other Ways To Communicate

James Guttman 5:07

that's what I learned about receptive language. I learned about other forms of communication. And I learned that the most important thing for Lucas wasn't literally speaking, it was having the means to say what he wanted, however that might be. Whether it was through gestures, whether it was through a device, whether it was through uh pecs, which was the first thing we did, very first thing I did with this kid, before we had anything else, before there was a device, and before we had like, you know, hand movements, I went and I started doing pecs. Now, if you've never done pecs, they are for a new parent with a child like mine, one of the most important things you can do. And I promise you, if if you've never done it, you'll be like, oh my God, what because I've had people do that, where they go, What is a peck? And I'll explain to them, they go, Oh my god, why didn't I do this? It's basically a picture, right? You put pictures out there, and Lucas could point to the pictures. If I want to watch a TV show, let's say I say, Lucas, you want to watch television? And I would put out pictures of his show. So there'd be a picture of the Wiggles, a picture of Sesame Street, a picture of Rafi, um, I forget whatever the fourth one was. And I go, what do you want to watch? Color crew, I think it was. I go, what do you want to watch? And he would point to one of them on my phone. To this day, like I would always sometimes show him things on my phone, let him point to which one it is. Um I had those unlaminated little pictures of things, whether it was a cup with a drink in it or a bowl for food. And I would put them with Velcro on a board and he would use that. As we evolved, I started using magnets and I would make pictures and I put them on magnets, and he had a little magnetic board in the living room. And when he wanted water, he would come over with the picture of the cup of water and hand it to me. This was long before anything. And I remember it was something he got immediately, and it was so helpful, and he didn't need to say a word. And that's the first time where I realized, oh, it's not about saying water, it's about letting me know he wants water, that's what's important. So that was important. But the fear I had wasn't about whether or not he would talk, it wasn't even about communication, which is again a surprising thing.

The Deeper Fear Of No Relationship

James Guttman 7:12

So I'm sitting here telling you, like, oh, well, he can communicate and that's what's important, and it is. But the fear, the heart of my fear when my son was little, was that I would never have a relationship with him. And this was a real genuine fear. Um, it was something that I was pretty much convinced was gonna happen, and it sucked. I would sit there with him in a room and he would play with his toys, or I mean, I say play with his toys, but even that, I was like, I don't know what he's doing. He would like spin wheels on a on a car, or he would like flick the pages on a book, and I watch him, and I would try to interact with him, and sometimes he did, don't get me wrong, he would play back and forth, but that was always like an achievement. If Lucas responded, so he was like, yes, but early on, especially, it was like I wasn't even there. And I told that story, and I give this woman far more impressed than she ever deserved. The worst speech teacher we ever had came to the house. I walked in one day, he was playing, and I walked in, and everyone said hello to me, and he didn't look up. And she's like, You didn't even look up when you came in. Oh my God, it's like you're not even there, it's like he didn't even notice you. Wanted to kill her, but she was right, and that's what I had been dealing with. That had been an issue. This kid doesn't even notice that I'm there. And even as he got older and he started identifying things, we'd have pictures in a book or whatever, and we'd go to school, and school would be like, send in pictures of you know his loved ones, and we'll have him pick them out. And I would have a picture of me and his mom at the time, and then uh, you know, Olivia, his sister. And I always would be like, he doesn't know the names associated, which one's daddy, and it would always be a struggle, but he could identify apple juice pretty pretty well. But that was my fear. My fear was that he and I were gonna have parallel lives. And um it felt at the time, I mean, thankless is a word I've used before, but at times it felt pointless. It's like, why am I doing this? This kid doesn't even, you know, know I'm here. I'm gonna read him a book that he doesn't want to hear. I'm gonna sing him a song that he doesn't care about, I'm gonna give him a hug that he doesn't give back. And I did it anyway. Every single thing I did anyway. And I did it for a few reasons. People would tell you, especially when you have a young child with uh autism who's non-speaking, they say, you know, one day you're gonna wake up, you're gonna be like, hey dad, let's go to the store. So you did it almost out of that hope that it'll happen. But as it didn't happen, I kept doing it. I kept doing it. And I promise you, if you are a parent in that position, it comes full circle and it comes back to you. You don't see the reward right away. The relationship I have with Lucas is based on years and years and years and years of working with him and showing him that I'm his person and showing him that I'm here for him, showing him that it didn't matter if he responded to me, I was there. I would be there to take care of his needs. If he wanted to eat, I would anticipate that if he couldn't tell me. If he did come to me wanting food, I would try my best to understand what he wanted so that he knew when there was a problem and he needed something, he came to me, I would do everything I could to understand him rather than just being like, just go inside. I don't understand what you mean. And that's when the meltdowns would happen if you did that to a kid. I will tell you, when it comes to common sense,

Showing Up And Refusing Dismissal

James Guttman 10:37

the easiest way to handle a kid like mine, and what I did was I just always put myself in his shoes. So I would think, what would I do if I came to someone with a want or a need and they just dismissed me? I would probably freak out, right? Like you're hungry and no one's feeding you. And you're little, you don't know if you're ever gonna get fed. Of course you're gonna have a meltdown. Who wouldn't have a meltdown over that, right? And that mindset taught me something else. Something that's important, something I think every parent to a child like mine should have because Lucas has severe autism. It's profound, right? It's not like I know people turn around and they go, Oh, he's he's a poet in his head. I don't know if he's a I doubt he's a poet in his head. I know my son very well. My son has a lot of um milestones he's never achieved, but he also has a lot of things that I can tell he doesn't fully understand. Um, if he had words, it would be easier to pinpoint, oh, look, he doesn't get this, he doesn't get that. But I I know as his dad that there's things he doesn't understand. Um, so it's not the kind of situation where the things that he comes to me with are always readily understandable, right? Like if he comes to me and doesn't have the words for something, it's not like I can always tell there's something behind it. And it's easy when you have a kid like that to dismiss them out of hand, right? So he comes over to me and it's like just bothering me. Okay, what do you want, buddy? You want a drink? He doesn't want a drink, he doesn't want this, and I go, just go, just go. You just don't bother daddy. I didn't do that. And the reason why I didn't do that was I made it a point to never assume that anything he was doing was just simply it's autism. He doesn't want anything, he's just tapping me to be annoying, you know. No. If my son comes to me, he's gonna walk away with something. Back in the day when I didn't know what it was, we would figure it out. And if I couldn't, he would get something. Comes to me asking for, I don't know. And by the end of it, he just gets a cookie. Here, take a cookie, go. It's whatever I could do to show him, listen, I'm here, I'm never gonna dismiss you. And that has played out so often. I've talked so much about pizza, and when he wants to eat dinner and he comes to me, I show him that the pizza's cooking, I explain it to him. I try to do whatever I can so that he understands me and to show him that I understand him. And that is what built our relationship.

How Years Of Trust Pay Off

James Guttman 12:55

And that's how, you know, this kid who doesn't speak, who grew into this man, this young man, that I early on in his life never envisioned being able to have a relationship with, ended up becoming honestly, and I could say this because his sister's away at college out of New York, he's my best friend in New York State. You know, his sister is my best friend everywhere else. And um, it's amazing to me. And it's not even pretend. And that's the thing that gets me too, because sometimes, especially when when he was little, I'm like, well, I'll always love him, and I'll just be, you know, like one of those kind of like ho hum, you know, we love each other. No, dude, honestly, my son is like amazing. I had a rough week this week and he wasn't here in the first half of the week. And I'm like, wait till I get Luke. I get excited to see him, I get excited to be around him because Lucas doesn't let you be upset too long. If he's in a good mood, you're in a good mood. If you're in a bad mood, he's still gonna put you in a good mood. Lucas is perpetually happy, at least around me, because he knows that I have his best interest at heart. He knows I'll never dismiss him and he knows whatever he wants and whatever he needs. I'm right here. And because of that, um, it has made our life easier. Um, it has taken this insurmountable challenge that scared me when he was little and turned it into something that is not only manageable, but at times it almost feels easy. It feels like second sight, you know, just knowing what he wants just from a look, you know, a visceral reaction. I feel it. Oh, he wants this. He knows that. And I've been lucky. Um I've just been lucky. I've been lucky to have this kid that loves me like he does. And to be honest, he's lucky to have me. I'm patient with him the same way he's patient with me. You know, I will sit there and I will figure out what he wants as long as it takes. And Lucas will sit next to me for as long as it takes to try to get me to understand. And there's been times like this, but he'll sit next to me, he'll want like something to eat, and he'll just come over with his hand on his mouth, like that's like, what do you what do you want, buddy? He'll look at me with this look of like waiting for me to get it. He doesn't get frustrated with me, he doesn't walk away. That means a lot to me. Like it means a lot to me that um that I can understand him, but it also means a lot to me that he believes in me enough that if he comes to me with something that he wants, he knows that I'm gonna figure it out. And that's not the kind of thing that you're born with. That's not the kind of thing that I sent him an email about. That's the kind of thing that you earn through life and through years and years and years of proving it. I've proven myself to Lucas and he's proven himself to me. And my biggest fear on the surface may have come true that he would never talk, but my true biggest fear didn't come true because we have the best relationship I could ever hope for. And hopefully you do too. If you have a kid like my son, there's not too many people like that, and there's not too many opportunities to get to have um this pure love on a level unlike anything else, where it's not built on trying to impress people and it's not built on him seeing how other kids treat their parents. I'll act like this because they're like that. He doesn't do that. That's how he genuinely feels. And the love that he shows and the way that he is with me is because he wants to be. And it means the world to me. And that does it for me,

Closing And Where To Follow

James Guttman 16:18

guys. I will be back on Monday with a brand new blog and hiblogomdad.com. I will be back next Friday. Every streaming service, hipodomdad.com. Follow me on social media, hi James Gutman, H I James Gutman. Uh by the book, Hi World I'm Dad. You can find it everywhere. Audio, digital, paper, whatever. You got it. That does it for me. Till then, James Gutman's hanging be well. Byepod. I'm dad.