Tony Mantor: Why Not Me ? - Victor Antunez:Navigating Parenting and Caregiving for a Child with Autism: An Inspiring Journey

Episode Date: November 15, 2023

Send us a text Ever wondered about the world through the eyes of a parent with an autistic child? Join us as we journey with Victor Antunez - a loving father navigating the unpredictable waters of raising his 6-year-old daughter on the autism spectrum, and 4-year-old neurotypical son. Victor gives a raw and heartwarming account of his family's story, from the initial diagnosis to daily challenges and victories - a testament to the strength and resilience of parents in his shoes. We explore the importance of planning for his daughter's future amidst the uncertainties of her condition. Victor's candid stories shine a light on the effort he and his wife undertake to ensure their children understand and accept each other. Hear about the crucial daily routines they’ve established that help manage their daughter's autism and imbue their lives with a sense of normalcy amidst the complexities. Plus, discover the essential part siblings play in engaging an autistic child and the importance of advocating for your child to get the services they need in the school system. Lastly, we delve into the power of hope as a parent or caregiver. Hope can normalize the environment for our loved ones and provide a beacon of light in what sometimes feels like a never-ending tunnel. He has written 2 books to help others pursue their quest for a better life living with autistic children. So, tune in to this episode, immerse in Victor's inspiring story, and expand your understanding of the experiences of parents raising children on the autism spectrum. You'll walk away inspired, knowing that you're not alone in this world. Let's keep the conversation going - share your story with us at TonyMantor.com. Remember, no matter where you are, you are not alone. Let's spread the word about our inspiring conversations on this podcast https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me The World Podcast, hosted by Tony Mayator. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make your laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. hopefully you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to Why Not Me the World. Today's guest is a father of two, one which is autistic, and he's also an author. So let's welcome Victor Antonez. Welcome to our show, Victor. Thank you for having me, Tony.

Oh, it's my pleasure. I believe that you said that you're living in my mind. Miami now. Well, I was born in Florida, raised in Miami. For 20 years, though, I was out of, mostly the country actually as a merchant marine, is traveling all the world. But Miami's home for me, and it's where I'm at now with my family. So it's where my heart is at, my family's at. Well, it's a great place to live, that's for sure. So I believe you told me that you have an autistic child. Yes, I have a six-year-old daughter. She's on the spectrum, and then I have her four-year-old little brother. He's neurotypical, though. So she's the big one. So it would age was she when you realized that might be something you needed to check out to see if she was autistic?

You know, around a little bit after turning two, it was actually my mother-in-law who read my wife and I had the right. She's like, look, you guys got to get that girl checked. But, you know, we were a first-time parent, and I just thought it was just cute behavior. You know, what do you know when you're a first-time parent? You don't know what is typical and what is not. But the behavior was a little bit off, but it wasn't off enough where I had the other check. But then my mother-in-law, she's like, you got to get a little. get a check. So around two and a half, we try to have her diagnosed. People would tell us, look,

I think she's autistic, but until she's three, we can't give you an official diagnosis. So I would say at three years old, exactly, is when we had her diagnosed. But we knew before that that she was autistic and she's still nonverbal, but thankfully my wife sang to her a lot, which is a little girl. Oh, I think that's just tremendous because being in the music business, I love music. So did you find that that helped her at all? So she will sing all day long. Now, most of it is not intelligible, but it just makes it hopeful in the sense that she is vocalized and verbalizing.

So we hope that she will become verbal, but six years old, you can never tell. Yeah, that's so true. When a kid is young, you just don't know what to expect. So it was the first couple, three years that she really didn't speak much at all then. No, no. And in fact, she had a regressment. She was younger than two.

she was very typical and I have a video of her where she's like trying to talk to me at like a one and a half year old level and it seems very normal and then she had a regression which you know when I've read a lot of literature and that's actually quite common yeah I've heard that that's fairly common as well so in the back of your mind you knew something wasn't quite right yes so after you did get the diagnosis what was the first things that went through your mind I mean how did you react to the news that you had just got? You know, I didn't really react. The one who reacted really hard was my wife and she, she wept, actually.

It was really hard on her. Yeah, I've talked with a lot of women and the emotions are pretty strong for that. You know, we're worried about her future. What's her future going to be? Sure. I think that's a very natural response for parents to go through at that point in time. So, you know, I took it in stride. But then, you know, I'm 10 years older than my wife, so, you know, I'll don't think more

maturity there. You know, you just seen more, you know. So, you know, and I didn't have my daughter was important until I was 44. So actually, you know, I'm like a late age parent. So maybe if I had been in my 30s, it might have been harder on me, but it wasn't so hard, but it was really hard on my wife. But, you know, we've made our bones with it. And she's coming along. We're getting her speech therapy. And, you know, she is talking a little bit and not great. And actually, I took her yesterday to a playground and it was the first time I think I've seen her interact with another child. Oh, that's great. So what was her interaction with the other kids like at that time? Usually she would just ignore the other kids. Now, it wasn't like a typical six-year-old interaction,

but she was like actually looking at the little girl, responsive to the girl, not in the way that a normal six-year-old girl would be, but it's still, you know, it gave me some of hope, you know. And in situations like this, hope is a great thing to have. Yeah, yeah. So you mentioned that your wife kind of took it hard in the first part of it. Oh, yeah. So do you think that she went through any issues there that some women go through that she was questioning whether she did anything wrong or not?

Oh, no. Well, that's really good because I've talked with a few women that after they had a child that was diagnosed, they started second guessing themselves, wondering if they did anything wrong. during the pregnancy. And in reality, they hadn't done anything, but they were just, again, just questioning themselves. Wow. Wow.

Yeah. I mean, if you think about it genetically, it is our fault because she is our daughter. But it's not our fault in the sense that we did something to her. Like, you know, yeah. So, you know, if my wife took it that way, she never said anything. I never took it that way just because, you know, I've been around enough, read enough to know just, I mean, it is your fault because you are the parents, but it's not your fault because you didn't do it to them.

Right, right. Well, I brought that up because I've taught with a few women, and they just told me that they went through so much emotionally, and they just questioned themselves and put themselves under a microscope because of it. Oh, I see. Ultimately, they realized that it wasn't their fault and focused on what's best for the child at that time. Of course.

I mean, I can see women taking it harder just because, you know, women are women and men, we're stoic. We don't take things flat of stuff, but I think that moms just because of their role in parenting that they're going to take things hard with their kids. That's so true. So now that she's six years old and you've gone through the first three years figuring out what she has to do, what are some of the changes you've seen and what are you doing now in her life?

She goes to a school for autistic kids, five days a week. And then we're also going to be having her going to. into an after-school program three days a week. So we're getting her as much each therapy and occupation therapy as possible. Okay. Do you know who Temple Grandin is? Yeah, absolutely. Okay.

Okay. Yeah, so she was born highly autistic and she was non-roval for a long time. And she gives her mom all the case. She calls her mother. She says, mother would, mother just didn't give up on me. And mother made sure I got all my therapies. And she's a PhD now and world famous with her, with her animal work. So just lots of hope there.

It's amazing that you brought her name up. I did a podcast yesterday the other day, and her name was brought up as well. Okay, she's pretty well known. Yeah, that's a perfect example of a person just never giving up and moving forward. And that's kind of what we all have to do. And you just hope as a parent

that you can eventually get your child to transition into the society the way that you hoped that they would when they were born. Yeah, get a job and just partake and do your part. Yeah, of course, that's what we all want as parents. Exactly. So now she's six years old. You've gone through three years of knowing that she's autistic. What have the doctor's given you for information or feedback on anything that can help her in her future life to make things just a little bit easier for her? Well, I mean, right now it's just the therapies. And her speech is coming along a little bit. And she is making some kind of

eye contact with people outside out of the family. But you know, at six years old, it's really hard to plan. Me, like my little boy, he's four. I actually plan more for him than my daughter just because he's neurotypical. Like, I can plan normal things for him. Whereas my daughter, maybe she becomes durable. Maybe she doesn't. So it's hard to know, like, what we're going to expect for her as parents.

Yeah, absolutely. I've had the opportunity to talk with people that have brothers and sisters that are autistic. I've talked with parents that have kids that are autistic. And the one thing that I've noticed is they have to explain to them why their brother or sister may be a little different than they are. You, however, have a six-year-old and a four-year-old, and they're going to be growing up together, learning together,

and that could be and will be their normal. Yes. So while you're going to be learning and they're going to be learning, it's going to be a situation that they grow up. up knowing what respect from each other. And then you just keep learning and growing. And it could be a good thing. You know, autism is becoming so mainstream now that there's really not that much explanations. People will see her. They'll kind of get it. Or you'll say, hey, we say one time, hey, she's autistic. And that's all you got to say. And they get it. So there still is a stigma out there. And my wife

was concerned about that. But I'd ever felt it. And we'd ever hit it from my family. She's autistic. And, you know, we don't, we don't instill any stigma on it. Unfortunately, you know, people are becoming much more accepting of it just because, you know, autism is on the rise, unfortunately. Yeah, it is. I think I heard the other day that one in 45 kids last year were born autistic. Which is a lot. That's a lot. Yeah. Yeah, it is. And I also heard that one in seven people worldwide either know someone or have someone that's autistic in their family. Well, sure, the six degree separation, I totally believe that. Yeah. Yes. People are becoming more aware of of it. I think the biggest thing they have to do is understand it. You know, because if you have to,

if you say that they're autistic, you know, hopefully, you know, people will, you know, try and find out a little more and, and try and help in ways that they can help so that those barriers kind of get knocked down. Sure. So she's six years old now and you're learning every day about her autism. So are there any daily routines that you've developed? What's it looking? like every day for you? A normal day as we get her up, like around 6.30 to be out to her by 7 to go to school. And she doesn't like going to school. So there's a lot of weeping and gnashing of teeth.

Fortunately, her little brother like Utah, like, he's time to go to school. He gets right up. He loves school. My daughter likes it too once she's there. So the morning routine is get her up, a lot of crying. But once she's at school, she likes school. She gets out at noon. But now at noon, we'll be putting her into an after school program for an hour.

hour. Okay. And then we get her home and we'll feed her and there's like a nappy time and you know, she's still sick. So it's just it's still, you know, even though she's autistic, it's very normal little kid stuff in the sense that they play in their sleep, you know? Yeah, sure. That makes sense. And that's really good because what you're doing is, is creating a normal environment even though she's autistic. And that way she can grow, develop, become who she's going to become. And that's to me what that I try and put out there for all our listeners on this podcast is that as much as things are the same, things can be different. And that's what people are. And sometimes if you let them, people will go into their own little shell and not communicate. And

this is something that we need to take and hopefully make a better situation for so that it allows the children to expand, grow, be themselves, and then that will take them out of their shells, just make a better environment for everybody to live in. Yeah, you know, speaking of shells, when she was little, she would try to just retreat to a corner of her playroom. And we were told that this was very normal behavior for autistic kids and not to allow it. So I would tell parents of autistic kids, that when your kids want to retreat, you have to engage them and get them out because,

If you let it become a habit, they'll just get used to retreat into their corner. And because we never allowed it, she still does it a little bit, but not as much. And then her little brother also is a big help because he's a little, little sibling. It's only the older kids alone. So he's always engaging her. But if you don't have that dynamic in your home, I'll tell parents that autistic kids across the board, they want to retreat. And for their social well-being, you just, you know, in a general way, just engage them and get them out of that shell. because socializing for autistic kids is not easy.

And I know other neighborhood kids are autistic and it's hard. And we as parents can have such a big positive effect on their social lives. But it's on us, not on them. Well, that is such great information. If one person can hear this realize that they might have to make a change, that's the whole goal of this podcast is to break down those barriers and help people and make a difference. I hope so. Well, it's people like you coming on to podcast telling others what you find, what you learn,

and then it's the ability to tell them how you dealt with it, what you learned from dealing with it, and hopefully they can use what you've learned to adapt and put into their families and help them moving forward with their lives. I'm sure there are. I mean, I'm on some different Facebook groups for autistic kids and parents, and you read the stories. And they're all very similar. You know, what's good about those groups also on Facebook that I like is that no matter how hard it is for you, there are parents that are going to do situations 10 times harder than yours. I mean, like, pretty brutal situations out there. So, yes, it is good to hear other stories to just put your own story in perspective.

Exactly. Yeah, there's a lot of stories out there that people don't want to hear. the biggest one that I've heard that resonated with me was a young kid told me that he was bullied through high school and because of that he kind of felt alone. With everything that's out there now, there's no reason why anyone in this world should feel alone. You know, and talk about that kid was bullied in school. You know, it's not the parents' fault because, you know, things are being much more mainstream now. But, you know, we as parents, If we can educate the teachers and their schoolmates of what their kids are going to,

we can make their lives so much better and so much easier. Yeah, I think the school system is a huge instrument that can help. I talked with one lady where she went to a school system, and because of the American Disabilities Act, she was able to get the school to help her get a lot of things that she couldn't get herself. Yes. You know, so I think the school system is a big tool. that a lot of people don't realize that's there to help them,

you know, make the, help their transition of their kids where they can, you know, live and move along and learn and grow. Yeah, you know, and talking about the school system, it is there for you, but as a parent, you have to advocate because they won't come to you. If you go to them, you can get, you get these services for your kids, but they're not going to come knocking your door and ask you. So you definitely have to advocate for your children.

Yes, yes, that's the one thing that she did say is that she never, She came along and some friends told her that go to the school and ask them. And then she did. And then all of a sudden she got started getting some help. That's fantastic. Yeah, it sure is. We like to hear when people get help, especially when they need it. And so many young parents don't have a clue as to what's out there because they're just so overwhelmed.

So they need to have places that they know they can go to, get help, get what they need for information, and that'll help them moving forward. Yes. This is where podcasts like this and people like you giving information that others might not have thought of that can learn and then from there can spider web out and just hopefully it will help many people along the way. You know, something else that my wife has been doing with both kids is she has started WhatsApp groups, you know, messaging groups with both sets of parents at the kids schools. So whenever there was a birthday party or any kind of social events, no kids are left out.

And my wife, she's a very social butterfly. So she's kind of the queen view of that. So that's just another way that parents can have kids for the children is go to school, start a messaging group with other parents, and just make sure that your kid or no other kids are ever left out. That's a really great idea. I think that's something that a lot of people, once they hear this, will look at and and think about. And that's what, again, that's what this podcast is about, bringing out new ideas, different things, making people think, open up their minds. I applaud you for that. You're doing a

real commendable job and have a really good mindset for it. Well, as I said, you know, I was 44 when she was born, so a little bit older, you know, calmer. If I had been 10 years earlier, it might have been different and not in a better way. So, you know, taking its tribe. Yeah, yeah, I get that. we all go through that. Well, she's six years old, and the last three years you've seen her develop, and she continues to develop, and I'm sure you're seeing your doctors and keeping up with everything. Have they suggested anything or come up with anything that you might have considered it all? Well, we're doing the ABA therapy, which is, you know, she is improving.

Aside from that, I really want to know what else, you know, because there's a lot of, like, non-traditional, you know, out there, but we're just kind of just, you know, just standoffish with that. So we're continuing with the ABA. Something that Florida does have, there's this program, I think it's through Medicaid, where, you know, you apply. It takes years and years to finally get on it, but they'll give you a monthly stipend that you can then use to use for whatever kind of programs that you might want to make a kid to.

So, you know, in South Florida, there's maritime programs and all sorts of outdoor programs that are, that are autism focused. So, you know, once we're, you know, once we qualify for that, we'll start doing that. You know, at six years old, there's just a lot of stuff that she is not old enough for. Okay. So as she gets older, you know, I'm very much into anything maritime that has to do with the water. So I'd like to get her in some of these programs that are working with turtles and with dolphins. And I hope that she will respond to that.

But at six, she's still too young. Just, you know, it's a liability thing. Can't have a six-old on a dolphin, you know. Sure. But as she gets older, we'll try those out and we'll see how she responds. And I'm hoping the maritime is her thing because it's my thing. And we can get together. That would be great.

Yeah, that would be great. Well, you know, we always hope. We always hope that our kids will do things that we hope that they'll do. But sometimes they just grow up and they have different ideas and we have to sit back and just let them do what they want to do because their life, not ours. Yeah, so we'll see how it plays out she gets older. Yeah, that's a good thing. So does she have any mood swings or anything along that line? Because your mother-in-law came up with something that was happening.

And did she see something you might not have seen in that? I don't remember what it was exactly, but her behavior was just off. You know, like, you just know it when you see it. It's been such a long time. I don't remember that. But, you know, now, you know, how does it present? She will have meltdowns. And she tries to express yourself and you try to figure out what does she want?

and you just can't and you know that the meltdowns is because they just get frustrated. And it's funny with the meltdowns is that I can be out in public now. And I know when a kid's having a tantrum and when a kid's having a meltdown, you know, meltdown is autistic. And I can just tell by the quality of the crying and the frustration, whether it's a normal, like, neurotypical kid having, you know, a tantrum or whether it's an autistic kid having a meltdown. It's funny.

Like, you know, you just get in tune with these things. But still as parents, you try to figure them out and you just can't. And you know, you feel bad because they're just getting frustrated, trying to make you understand and you just can't. So the way it presents now, you know, and this is very common with the autistic kids is just the meltdowns. And you just try to figure out what they want and it's really hard. Yeah, I can just imagine how hard it can be. So now you've got a six-year-old and a four-year-old. So when your six-year-old has a meltdown, how's your four-year-old handle that?

He doesn't react hard to it, but I can sometimes see a little bit of just, I don't know if it's fear or if it's just weighing on him and I'll go and I'll pick him up, hey, it's okay. Your sister is just a little bit sad right now. So as he gets older, it'll be interesting to see how he deals with that. And there's actually groups out there, like support groups of teenagers that are like the siblings of autistic kids. So, you know, if he needs it, it's there for him. But it'll be interesting to see how this affects. But I do think that it'll make my better person. It's just, yeah, yeah.

Yeah, that's great. I was talking with a person just the other day, and he said that because of his autistic children, that he believes that it's made his family a better family. So now to switch gears just a little bit, I understand that you've written a book. Well, I've actually written two books. One is about relocating with autistic children,

And the reason I wrote that is that when I relocated back from Peru to Miami, that was like my lived experience with my family. So I wrote a book about that to help other parents. So there's checklists in there. It talks about air travel, car travel. I also wrote a book about renovating your home to be sensory friendly for your autistic kids. Wow, that's great. Two separate books with two separate topics. So what led you to write this?

Yeah, and that's just things that we've gone through in our own home about getting the house ready to have, you know, have kids in there so they don't kill themselves. So like the playroom got padded floors, padded walls, very neutral color, a calming pastel colors. So, you know, I talk about like child gates so they can't just walk around the house on their own. So, you know, I've got books that cover that. You know, of course they're all real estate related because that's my, that's my industry. So the two books that I have out. Oh, that's so good. So have you got good feedback?

Like I've heard a lot of authors that get feedback on books they write, especially when it's about autism. So what kind of feedback have you got? Well, I think probably the most valuable part about the books is the checklist. People tell me, those checklists are awesome. So I have very lengthy checklists in both books about things to cover, you know, and just make sure you do them, you know, cross all your T's and on all your eyes. Absolutely.

So where can they find these books? They're on Amazon. They're also on my website. On my website, you can download the first three chapters of both books. So you can go to Miami Autism Dad.com or you can go to Amazon and look them up there. Oh, that's great. So how have they done on Amazon? Pretty good, I would imagine, because it's a great topic.

Yeah, one of my books, the first book, the relocation book, that was number one for a while. Then it dropped off. That's awesome. I mean, that's just a great thing. you're doing really good things to help a lot of people. And I'm sure that they're going to really appreciate it. So let's plug the books again one more time. What's the name of the first one?

It's the autism and special needs family relocation blueprint. Great. And the second one is? Home renovations for autistic children. So, I mean, the title says what they're all about. And like I said, you can download the first three chapters on my website. And the checklists are in there. And, you know, I think that people will get a lot of value out of those.

And the great thing is I've met so many people that are doing exactly what you're doing. They're finding their niche and they're writing books. And I believe that it's helping a lot of people. You're doing great work. So in closing, and I really appreciate you coming on, this has been a great conversation, great ideas, great thoughts. Do you have anything that you'd like to share with us about your daughter that you think is just kind of special? Well, was that story I told you about earlier? is that yesterday at the playground,

she was actually, like, interacting with another child. And it was the first time I've seen because, you know, like neighborhood kids will walk up to her and try to engage. And she won't even look at them. Like, they just don't exist. And yesterday for the first time, she actually interacted, like, eye contact, you know, what the other kid want, just looking at them. So it just gives me hope because, you know, before that, I mean, I would just tell you, I'd never seen that behavior.

And now I saw it. And so that makes me happy. Yeah. Well, that's awesome. It's always nice to be able to sit back and look at your children and just have that nice, warm and fuzzy feeling and have a smile. And we always need that sliver of hope to believe that things will be better. Yes, that sliver of hope.

Yes. You know what, that's actually a very good point, Tony. Is that you as a parent or a caregiver, you got to look for that sliver of hope. Absolutely. Find it. Finally. Because, you know, maybe another parent that might have happened and they might not have seen it, but maybe because I'm just looking for it. And that little sliver that I went and I found or I noticed that just, it made my day. It just makes me hopeful. So I think that, you know, we as parents or caregivers is, look for that sliver help. Because you know, it's always there if you look. Yeah, sure is. We just have to be open-minded enough to see it. And with that said, I really appreciate the conversation. that we've had. It's been really good with a lot of great information in it. And I appreciate you coming on. Well, I wish you all the luck with that with the podcast. And this has been great having it, you know, beyond what you show would you. Yes, it's been great to have you here and I

really appreciate it. Thanks for taking the time out of your busy schedule to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to tonymentor.com, contact, then they can give us their information so one day they may be a guest on our show. One more thing we ask, tell everyone, everywhere about why not me, the world, the conversations we're having and the inspiration our guests give to everyone, everywhere, that you are not alone in this world. world.