Lost Voice, New Insight

It's the journey made with Hi Pod I'm Dad. Guys, it's James Guttman. It is HiPod I'm Dad. Thank you once again for finding us. It is another Friday. As you know, I am the host of HiPod I'm Dad. I am the dad behind Hiblogom Dad.com. And rarely, if ever, is there a week off from the podcast or from the blog. But last week there was no podcast because in a rare moment I was sick, which normally doesn't stop me. Um I try to come in, I try to still do the podcast when I can, but the universe decided that I wasn't going to have a voice anymore. So I literally lost my voice, which is incredibly rare. Never happens, and I know it never happens because when it did, I thought to myself, oh, this'll be a good test. My son Lucas, he's nonverbal, he has autism, he's 14 years old. I don't need words to communicate with Lucas. We can just, you know, pantomime to each other and kind of get through it, and he'll follow along and I'll follow along. But like most things when it comes to um autism and interacting with my son, I learned that things that I assume aren't always things that happen. And in what I can only describe as surprising, we both needed words, right? So it was almost impossible for me not to say things to him. Like I'm doing hand gestures and waving and hi and come on, but I don't know, man. I live in my world, and in my world, silence can sometimes feel a little uh disconnected. So rather than doing that, I'm sitting there gargling at him, like you know, Robert Kennedy trying to get him to come with me. I'm like, I'm waving to him, like, come on, come on, come on. And he's ignoring me, and I'm like, come on, and then he gets up and he goes, um, which is also him, because Lucas, again, has no words of his own, but his receptive language is really good. So if you tell him, give me your cup, he'll hand you his cup. If you do the motion for the cup, he might give it to you. But I find that he's more um in tune with what you want when you're able to use your words. So that was a surprising moment for me last week, but that's why I was gone. I'm here this week, and I'm glad, and I appreciate you guys uh finding us once again. Now, I wrote on Monday a blog post that kind of piggybacked off of this quote that I had posted on Facebook and Instagram about autism appreciation, which, as you guys know, is the crux of what I do here, explaining how you know my son's personality because of autism is beautiful. There's things that he does that other people don't do. And I've had others try to turn around and say, well, if he if he didn't have autism, he'd still be the same person and he would, but there are definitely social restraints that are put on all of us, right? If I'm excited about something, I have to be excited in a way that's presentable to the rest of the world. I can't run through a restaurant clapping and jumping and screaming with delight because I'm worried about what everybody would think. My son does not care what anybody thinks, and a big part of that is because of autism. Uh, Lucas is not fake with his emotions. If he loves you, he loves you. If he's sad, he's sad. If he's angry, he's angry. There's never manipulation. There's never the attempt to um portray himself as something other than what he is. If he wants pirate booty, he wants pirate booty. He doesn't want it because you bought it for him and you're gonna feel bad. I might as well eat this. That's not what he does. You know, Lucas doesn't care. I had one day, I remember we were downstairs watching TV and he wanted to run upstairs to his room. I'm like, Lucas, no, come, come here, stay with me. Come on, hey, buddy, come on, stay, stay. And he's like sitting there listening to me beg him to stay downstairs. I'm like, come on, you don't have to go upstairs. And he's looking at me, I go, fine, you want to go, you can get it. And before I even got the words, you can go fully out of my mouth, he was gone. Um, so yeah, that's what's and it's cute because on a selfish level, you turn around and you go, Well, he left you. That's not cool, but no, man, on a purity and um and being true to himself level. I have so much respect for that. I'd rather be around a person like that than somebody who's gonna play word games or dance around, or you know, I didn't really mean it. When I told you that, I thought that you wanted, you know, and he doesn't do that. You know, Lucas doesn't, if there's one slice of pizza left, he's not like, hmm, should I eat it? Someone else might want, he doesn't do any of that. If he wants it, he wants it. If he doesn't, he doesn't. You know, and it's up to me as his dad to be like, no, Lucas, you gotta wait. That's for somebody else. But I don't know, there's not a lot of people like that. And that's what I respect and that's what I love about him. Now, so I write this blog post about autism appreciation being more about me than about him. And the response was huge. This was like one of the most responded to um posts that we've had on High Blog on Facebook. It was amazing. Just like a thousand reactions and like a hundred comments, and like 99% of them are all, you know, oh, I see it in my child too. Now, we don't have the exact same lives, right? Like we all have different kids, we all have different situations. So I don't know or expect anyone ever to agree 100% with what I do. But I had people on the flip side turn around and be like, well, my child has this, and I don't love autism because of this. And they'll tell me their situation, which is in some ways different than my situation. Lucas has severe autism, profound severe autism. I dance, I'll say dance around because that's not the right way to put it. I respect his privacy, right? So I won't tell you specifics on what he can and can't do, the things that I need to help him with and not help him with. I say tying his shoes as a catch-all to give you an idea that there are things that you do for toddlers and even earlier than that, that I still do for Lucas, right? I'm not gonna betray him, I'm not gonna tell you what those things are, but just rest assured. If I wanted to write a blog about the difficulties that come with raising a boy like him, I could do it. I could complain all day long. I could do it about anything, though, right? We all can. I could complain about being an adult, paying my bills, I can complain about raising my neurotypical daughter who's 17, and oh my god, being a single dad with a 17-year-old daughter. There's a lot of things that are easy to complain about, and Lucas is a part of my life, and he's one of them, and there's a lot of work and worry and concerns and at times misunderstandings that play out in our lives. I don't ignore those things. In fact, I acknowledge them throughout my writing. I don't focus on those things. That's the only difference. They exist and they're real, and a big part of autism appreciation is accepting that those things exist and they're real. And that's why I don't portray him as a superhero. I don't portray him as telepathic. I don't pretend he understands everything. Because the reality of who my son is is why I love him. He doesn't need to be anything different. He doesn't need to have some sort of hidden power. He doesn't need to count toothpicks or whatever things people associate sometimes with autism. He doesn't need to do any of them. He doesn't need to catch the football at the end of the movie. He doesn't need to go to prom. He doesn't need to be a scientist or do artwork. All these things that exist in our world, he doesn't need to do them. He could. I'll be proud of him if that's what he wants to do and that's what he goes on to do. But autism appreciation is the fact that I am proud of my son and I love my son simply for being my son. Even if everything he does is only in his world, I love him for it. They don't make a lot of movies about people with autism and where the happy climax at the ending is they're just themselves. You know, the movie doesn't end with the kid sitting on a couch playing on his iPad, eating pirate booty, drinking orange juice. Mine does. That's my boy. I love who he is, and I look at all the beauty in his life. Now, some people can't. I get it. I've explained before who I am, why I am the way I am. I've always kind of been like this to an extent. I had a Quintemple bypass in 2012. It was a near-death experience, and I've had others. There's been moments in my life where I thought I was gonna die, and you come out of it, and you're like, oh, all right, this is life. That was the most pronounced one, and that was the most recent one, and that was the only one as an adult that I had. I thought I was dead the night that I was in a Quintumple bypass. It was an emergency, I had had a heart attack. I've told the whole story a million times. But I went into that hospital worried about my son not speaking. And I had surgery, and I came out of that surgery wanting to see both my children and not caring about who speaks and who has what. These are my kids, and I loved them, and it changed my point of view on things. I focus on the positive moments because why not? No one's gonna give you a new set of cards because you complain about your cards. All you're gonna do is just remind yourself of the difficulties over the positives. That's how I live. That's how I live every day of my life. I talk about the waiter uh analogy. If you get the world's best pasta served by the world's worst waiter, where do you lead when you tell the story? Do you start with the waiter or the pasta? I talk about the pasta. I had this great pasta, it was amazing. Waiter was not so great, but oh my God, you should try it. That's how I would do it. I know people, and maybe even earlier in my life, I was one of those people that would be like, dude, this waiter, oh my God, the pasta was good, but oh my God, he was terrible. I don't want to live a negative life. And unfortunately, negative and positive is really our own perception. It's what we choose to have it be, right? There's positives and there's negatives in every single one of our days. And if I talk constantly about the hardships and the heartache and the problems, that becomes my reality. This is only for me, right? So if I've had a day where there's like a hundred bad things and there's five good things, and all I talk about are the bad things, it sounds like I have a pretty awful life. But if I talk about the good things and kind of let the bad things go away and move past them, I have a good life. And I've learned to do that. And not only learned to do that, but it just kind of naturally happened as the years went by. I looked at everything that was happening and I saw with my son, like, this is a very difficult situation. This is something parents fear. I feared having a child who at 14 is non-verbal, has severe autism. I'm sitting here helping him get dressed in the morning. It's it sounds like such a difficult life. But I also get to have this unique relationship that I would never have with anybody else. There's nobody like Lucas. I've never, I mean, I've been around people with autism, even severe autism, but I live with this kid and he's in my house and he loves me and he relies on me and he makes me feel important and he makes me feel cared for. He shows up in my house. He came over, you know, last night, he came back to me and he walks into the house and he sees me and he jumps in the air and he claps and he screams and there's that big smile on his face. He makes me feel like a celebrity. He makes me feel wanted, he makes me feel loved. And a lot of the way he expresses that is part of autism. And that's why I can't hate it. Now, look, Lucas has had autism since I met him, since he popped out. This kid has had autism. This has always been a thing. It's not the kind of thing where, you know, oh, he was advancing and then he fell, but no, he's always been on the spectrum and he's always struggled with certain things because of his autism. So this is his personality, right? Like Lucas, a lot of his personality is wrapped around being on the autism spectrum, the way he sees the world, the glares in the mirror, the glares in the window, the glares in people's eyes, the music he likes, starting, stopping, the way he eats, the way he walks, the sounds he makes. It's all from autism. And I love this kid. So honestly, if there was a magic wand, if there was some sort of magical cure tomorrow to cure autism, and I woke up and I went into his room and he's like, Oh, dad, what's up, man? He's like, I've been waiting to shake this off. Now we can hang out. I would be like, Who are you? I don't know you, right? I don't want that sudden change. I'd like to teach him things, and I still every day I work with him. Lucas, say hi. Hi. Try to get a hi out of him. Now, if he naturally learns how to say hi, that's great. We'll build on that, we'll work on that. But if he never does, I'm good because he's Lucas, and Lucas is awesome. Now, all of this way of thinking, right? This is how I live my life. I've never been happier than I've been since adopting this, since learning to be like this. This is something that I love, something I try to tell people about. On top of everything else, I talk about the trust I build with him and how to have that relationship with a boy like him. But in terms of me and how I see him and how I see the world, this is my own way of doing things. Do you have to do it? No. No one else has to do it. I it'd be great if you did. It it helped me. I think you could help other people. But I don't need people to do the things that I do. And so many people assume that I do, right? Because I've had people try to talk me out of it. I post an article like this. Oh, I appreciate my son's autism. And nowhere in the article am I like, if you don't do this, you're a bad parent and you're gonna be terrible. And no, none of that. This is who I am, this is what I do, this is why I do it. And people will shoot back at me with, you know, well, life is pretty hard, and you don't understand. It's like, well, you're not gonna convince me to be you. Like, you know what I mean? Like, I'm not doing it to you. And the best example of this, I don't know if I've talked about this on here, but since my surgery, I'm uh pescatarian, which sounds incredibly pretentious, but pretentious? Moi. Um, which basically means that I don't I stopped eating red meat, I started eating hard healthy. I kind of cut poultry out. I'm like, yeah, if I'm not gonna eat fried chicken, I'm not gonna bother. I cook all food for my kids, but for me, I the only real protein that I eat outside of you know chickpeas or whatever, are fish of some sort. And I will tell this to people, and you will be amazed. And I don't know how much of it is them being harassed by vegans or whatever it is, how many people will turn around and be like, well, I'm gonna eat meat myself. I'm like, okay, I've had somebody do that. I'm like, well, I'm a pescatarian, I don't eat meat. Well, I'm gonna eat meat, and I'm like, okay, who cares? Eat whatever you want, enjoy more fish for me. Like, what do you want me to say? And I think people make that assumption. When you tell them about something in your life, they assume you're gonna push it on them and make them be like that. That's never been what this blog is, and that's not what our life is. The idea of what I do when it relates to like how to relate to Lucas and trust and building those things, those are things I think are important. I think parents with kids who are nonverbal or on the spectrum should listen to that and try to build trust. I think there's nothing more important than it. I don't think you should videotape your kids' meltdowns and put them online. I don't think you should stoke negative reactions from your kids, which I've seen on TikTok and they make me want to cry for these kids. I don't think those things should happen. When it comes to how you view the world, how you view your situation, I can't make you view it any other way. I can simply tell you that I have never been happier than I am, having seen the world the way I do. I appreciate Lucas, I appreciate my life, and I appreciate the beautiful parts of his personality that come from autism while at the same time, important, acknowledging the things in his life that are difficult because of autism. One does not erase the other. It's just what do you put a focus on? What do you think is more important, and what do you want to tell people about, right? I don't complain about my son. I don't complain about him online, I don't complain about him to people. Don't get me wrong, we have hard moments. We have some mornings where I'm just like, what am I gonna do? And I wrote about that. We've had middle of the night moments that you have to deal with. But at the end, I try to put myself in his shoes and I try to remember as difficult it is for me, how difficult is it for this kid to not know if his wants and needs are gonna be communicated to people who aren't his dad? And that's kind of a scary thing. So I try to always remember this is my son, and I love him, and I look at the things that I've told you about about him that to me outweigh the negatives and the difficulties, the worries, the concerns, the fact that, you know, he's gonna need chronic care, someone's gonna have to care for him, I'm gonna be dead one day. All the concerns that people have when raising a boy like him, I have them too. I absolutely have them too. I just don't focus on them in our day-to-day. You know why? Because all we have is right now. The time that I have with him right now exists today and here, and one day it's gonna be gone. And the time for those negatives of worrying, where's he gonna go? What are we gonna do? And oh my God, what's gonna happen after me? All that's coming, and those are gonna be pressing issues at some point, but they're not pressing issues now. All I can do is prepare for it, get myself ready, and focus on the parts of our lives and on his personality that I love. And that's the whole point of autism appreciation, and that's what I do, and that does it for me, guys. Until next Friday, this is James Gubman saying, be well. Check me out on the blog, hiblogomdad.com Monday. I'll be back with that. Until then, byepod. I'm dad.