Tony Mantor: Why Not Me ? - Ali Carbone: Journey of a Sibling: Embracing the Challenges of Growing Up with 3 Autistic Brothers

Episode Date: September 13, 2023

Send us a text As a sibling to three autistic brothers, Ali Carbone has a heartwarming and inspiring story to share. Growing up in a family with unique dynamics, Ali opens up about the difficult decision her mother made to place her youngest brother in residential care at 11 years old and how this experience has shaped her identity. Join us in this enlightening conversation about the challenges and joys that come with being a sibling to autistic individuals. From confronting friends who use derogatory language to understanding her mother's emotional journey, we explore the power of language and the impact it has on our perspectives and relationships. Ali shares how her life has been lived for her brothers and how she found her own identity through writing a book that focuses on her experiences rather than solely on her brothers' autism. As Ali offers valuable insights and advice for those without autistic children to help support those who do, we also discuss the importance of having conversations about disabilities. Listen in and learn from Ali's incredible journey and how it can inspire us all to be more understanding and supportive in our everyday lives. 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 Mantor. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make you 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, our guest has such a story to tell. She has three autistic brothers. She's just written a book entitled What Are You Looking at?

Ali Carbone joins us today, and I'm just so happy to have her on the show. Thanks for coming on, Allie. Of course, I'm excited to be here. This is my first ever podcast. Wow, that's awesome. And I am truly humbled that you picked this one to be your first podcast. So let's jump into it. I understand that you have three brothers that are autistic.

Yes, yes. I like to say, I always say hat trick when people asked me about my little situation. I was actually, I went to like this sibling meet up a couple. was like a week ago. And she was like, oh, you have, you have brothers, you have a brother on the spectrum. I was like, no, no, I got three. And the look, like the looks that I go from people when they hear that is always like, like such hard. It makes me laugh. Like I can't not. Like every time, it's almost like if you got had a really bad injury and you're like, oh yeah, I got it in a shark fight. Like, I almost feel like that's the reaction I get every time I tell my story. But yeah,

that's that's who I am, that's who I pride myself to be. I think that's also kind of the, the preface of this book is that I consider myself the sister of three autistic brothers. I don't consider myself Ali Carbone. That's really interesting. That's quite a story to tell, actually. That's the jump off of my story, is that like my life has been lived for three other people. And that's a badge that I am very proud of. But have now, you know, I turn 32 years ago, I just turned 31. And I realized that maybe it wasn't a badge. Maybe it was a shield that I was trying to protect myself with.

And I've realized that there is a large group of people out there that, you know, go through the same things that I do. And we're not spoken about because we're not the ones. that, you know, we're not the disabled ones. We're not the ones that need the extra help. But ironically, when we're raised in these situations, we end up needing it. So are you in a position now where you're still taking care of your brothers or what's happening there? No. So my three brothers are actually in two separate group homes.

When I was a end of sophomore year, going into junior year of college, three spots. up in a children's residential program, probably like 15 minutes away from my parents' house. And it was like right on the beach and it's through the school that they went through. And that's like super, super rare for three spots to open up. My youngest was 11 at the time. So obviously not ideal. My oldest was, what was he like probably 16, 17? So like, you know, I was in college or no, he was probably 18.

So it was becoming time for him to go into a group home anyway. and they called my mom and they said, you know, we have three spots in this house. Do you want to put them all in? So, yeah, she took that opportunity because that basically guarantees them housing on Long Island for the rest of their lives. So that must have been a pretty tough decision at the time. It was really a decision that she made for me because that's a children's program that they could only be there until they're 21. So my oldest, Michael, he was there for, you know, for four years. And then the two little ones, Anthony and Luke were there for, you know, almost five.

And now all three of them have officially aged out. My oldest Michael lives in one group home that's like 20 minutes south of my parents. And then the two little's moved into a group home that's actually like 45 minutes out east a little further. But kept their same, kept the exact same house with the exception of my oldest brother because he aged out years before them. Same housing manager. not the same staff because it was so much further. But yes, all three of them are in group homes now. So I definitely have a different, I have a different experience than a lot of siblings.

I think there are a lot of siblings that are, you know, they're responsible for the day-to-day care. I'm fortunate enough to have a mother that took, you know, that it wasn't a risk. It was another sacrifice because think about how hard that must have been to put here, 11-year-old baby in a group home, but was also doing that for her, you know, her 18-year-old baby at the time who she knew would not be able to handle all of that on her own. Wow, that's pretty awesome of what she did for you because a lot of people might not have been able to done that. Yes. So tell me a little bit about your brothers. You've got three of them, all autistic, and I'm sure that each one of them are unique to themselves. I like to say that

this spectrum is represented beautifully under my roof because it really is they all are on different levels. So Michael is two years younger than me. So that would that would make him, oh my God, he's almost turning 30. He's 29. Michael is complete. He's the lowest and the lowest lowest functioning. So this is like also not like this is a conversation. People don't like high functioning, low functioning labels. I was six years old when my brother, you know, or I was four years old, when my oldest was diagnosed. So I don't know like the new terms. Like this is how I refer to it, you know?

Michael is the lowest functioning. So he's completely nonverbal. He is also completely blind and epileptic. The blindness didn't happen until 2008. So I was a sophomore in high school. So he would have been in middle school. Like my parents just noticed like they would hand him things and he'd start like grabbing for it like and it was like a slow progression but because he's nonverbal he can never say

hey guys i can't see anything and you know between neurologist and with him being nonverbal and so low functioning it's so hard to get even get a doctor that'll see him you know that and examine him like michael my oldest gets put under general anesthesia to have his teeth cleaned every year wow that's uh that's very rough and and and i'm sure just overwhelming for your parents and you had to go through that as well. So you said you had every level pretty much covered. So how are the others? Yeah, so then Anthony, Anthony is super verbal, super social,

but has very, very bad OCD. So it, like, makes it very hard for him to function in this world, you know? Like, he also is terrified of dogs. He loved dogs when I was younger. And I brought one of my best friends' puppies. over to meet him and he like nipped him in the eye and ever since ever since then if he sees a bee it's like he screams bloody murder and like i don't know what it's like for you in Nashville in New York everyone looks at dogs like children so like and especially i live in the city you can't

go to a restaurant without a dog being next to you so like i can't take my most social and most verbal brother pretty much anywhere he's so terrified and that's not it's also not a dog person thing he's got bad OCD. But he'll have a conversation with you. Like when you look at my social media, that's the one that I'm always sharing. He loves to sing. He loves to dance.

He's a performer. He's dramatic. You know, he's the star of the show. And then you've got Luke, my baby, who was two years younger than Anthony. He is very, very smart, but he's not social and not like he's verbal, but only what he wants to be.

So like, if you ask him a question, he'll answer it for him. you, but he really likes to kind of do his own thing. He's definitely like a solid mix. Okay, so you've got three brothers. Each one of them have been diagnosed autistic. So as you was growing up, was that discussed with you and did you have to be told why your brothers were a little bit different from you? What was some of the conversations that might have gone on far as you understanding what autism is? I wish that I could answer that for you, but I cannot like it's in me like i we never had that conversation it's funny so like when i started

writing my book um put together a book trailer because i crowdfunded like the money for the to actually to write it for production so um i'm going through all this old family footage that my dad sent me old home videos and peppered in there was michael's diagnosis video and it's it's the video that one of the therapists asked my parents to take of him displaying like ticks like early kind of signs. And you see in the video clip of me, like, I keep trying to get in front of the camera. I'm like, and my mom is getting frustrated. And she's like, Ali, please. And she's getting angry because they're trying to figure out what's wrong with my brother. Like, there was never a conversation with me. I mean, I was four years old. Maybe there was, I remember. But for me,

I've always just been protector. So basically, you grew up not knowing, but you knew they were different, but it still was one of those things that you didn't have to take and be explained to. You just accepted it and moved on. And I wonder if that's because I didn't have any other typical siblings. Like maybe if I had other typical siblings, it would be like, well, why is this person and not this?

But for me, it was just, okay, I'm here. This is what my brothers look like. This is what brothers are to me. Well, that just shows you that basically, you grew up where autism was the norm. It wasn't looked at completely different because you had to live it and be with it with your family. Yes. Autism, autism is normal and I'll tell you. Autism is so normal for me that I cannot look at a word that has A and you in it and not see the word autistic. Wow, that's really good. That speaks very highly of the way that your brain functions as well. So here you are. in high school trying to have a social life.

And did you have any issues with anyone looking at your family a little bit different because you do have three autistic brothers? Or did everything just go along relatively smoothly? Like I definitely remember, like there's one thing I have to say is that like regardless of my family's situation, my house was the house that you went to hang out at. I don't know if that's because my parents wanted me to have to have. like the most normal life as possible or maybe like my house was filled with sensory toys and we had a big backyard with a pool because that was all you know good for for the boys um but but yeah I mean like I definitely have one specific memory like it was I don't know maybe it was like my 12th

birthday party 11 12 maybe younger it was my SpongeBob theme birthday party I remember two I saw two of my girlfriends laughing at my brother, like slap, like flapping around doing his thing. And we were kids and like I never said anything to them about it. But that's definitely something that's stuck in my head. But, you know, a better story actually, like one that I actually like made a difference with my best, two of my best friends. One of my very, very best friend, her and I did a Euro trip together after college. And retard is a word that everyone. like my generation, millennials use retard as a descriptor in a way that boomers may have said,

oh, that's gay. Like, that was the word, right? And it didn't really affect me until, like, I used to use it myself. And then there's something kind of flipped. And so after college, you know, we're driving around. And I'm in Europe with my two best friends. And they just keep saying retarded. They keep saying retarded just in normal conversation.

and I stopped them and this was probably because I was overtired and just in a band mood we're in the fifth country by now and I stopped them and I said guys you realize your best friend has three autistic brothers and you continuously use the word retarded

like would you would you call a black person the N word no like and and from that moment on those two people I've never heard them say that word since that's a great story so that just shows

that all we have to do is give a little understanding and hopefully it can change people's minds a little bit. Now with that said, going through high school and college, there's always certain people that tend to create problems. They tend to bully a little bit or just try and impose their will on others. Did you ever run into any situations like that at all? I think, well, no. I definitely dealt with a lot of bullying like myself

because I was like this Italian girl in a very Irish neighborhood at the time so I was like darker and hairier and whatever I definitely have I definitely did have a lot of out in public situations where I had to fight people for my brothers never around my friends

so like in my book like the beginning of my book, like I talk a lot about like getting kicked out of the Pinocchio Cafe at Disney World because people were staring and I lost my mind and I screaming and I have, you know, of me fighting with two little girls at my beach house because they were pointing and laughing at my brothers. I've had instances where my oldest Michael was having a meltdown in a diner and he headbutted me in the middle of the diner while I'm trying to get him out to the van and everyone's looking at him and pointing at him and I turn around and I start screaming at everyone else. Like I definitely have like, I'm always in defense mode.

Like I'm always looking, I don't want to say I'm always looking for a fight, but I'm always, I'm always ready to like confront like what feels like injustice. I hate being stared at. Like that's the, what do you at, you know? Yeah, I get that. So we've covered what you've kind of went through during your formative years in high school and college. But you've got three brothers that are autistic, but you have parents that have three sons that are autistic. I know that there's a difference between the mother and father, lots of times the father will deal with it a little bit more internally.

How does your mother handle that? she i like you could if you look at a picture of her license from like when anthony was diagnosed like she was completely gray like wouldn't color her hair like completely depressed like yes it happens once right and then she's upset about michael and then she has another kid because she doesn't want me to be alone with michael and ha ha jokes on you he's autistic too so now now she's depressed shit did i just do this again uh and i'm giving i'm giving my daughter more. And then she had Luke, that was a surprise, but thought, great, maybe this will be, you know, Hallie's typical sibling. And again, so I think she had to go through it three times.

It was never ending. And yet, it affected me. Like, I wrote in the book and I don't know if, I don't remember if it made it to publishing because I've read it so much that I can't remember what made it and what didn't. But like, when I was younger, when I would come home, I would yell mom up the stairs. And if I didn't hear her, like if she didn't answer me, like I had a serious, I had a serious fear that I was going to find her hanging in her closet. That's like, that is a childhood memory that I have and it doesn't go away. And sometimes I wonder, like, why did I feel like that? Like she was, she was loving to me.

Like she, my parents were not, they did not ignore. me. They did not. I think it's just watching her, just feeling her sadness. Like, I think I also like to say, like I call myself an empath. Like, I have a hard time not embodying what people feel around me. And I think that's because of the environment that I was raised in. And it was hard, it was hard for her. And it's, it's an ongoing thing for her. She never, she's to this day, like she's not just guilty about them now especially with this book and like with me moving in the house and starting therapy she's guilty about me and it's like it's just like never ending compounding sadness for her well that's just a lot of of weight to carry on anyone's shoulder and i'm sure that she did the best that she could

given her situations this is where like the glass children conversation kind of comes into play. And like, I didn't learn about that term until after I wrote an entire book about being a glass child. And if you don't know what it is, a glass child is basically any person that's raised in a home with a special needs sibling. And a special need sibling doesn't need to be disabled. It could be someone that's troubled that has a drug addiction, that's sick. Anybody that's going to take, you know, more attention. That's a lot to take, especially as, a, young age and being a kid? There was really not a lot of room for me to be a kid.

Like what I like to say, I describe my childhood, my family life as three on three. I wasn't a kid. It was the three of us versus the three of them. It was always who's got Anthony, who's got Michael, who's got Luke. So, yeah, that was kind of, that's kind of how it went. there was, I actually went back my dad the year that my brother lost his sight. My dad wrote a letter for Christmas to send out with our Christmas picture. And I read the blurb he wrote about me and he wrote that, you know,

Ali were so proud of her. She's so responsible. And, you know, she does, you know, her studies and her activities and her friends, all with little prodding for us, like, so responsible. Like, I think my biggest thing was that I had. to I don't want to say raise myself because that's not fair to my parents but I I had to, you know, I had I had to be a third adult from the time I was probably six years old. Well, it's it's a situation of where you, like you said, three versus three, you know, you have to stop in

And remember, you know, you're still a child, okay? But yet you're taking on all these responsibilities of an adult to help your parents with three kids that are, that have issues, you know, in dealing with life. Yeah. And like, even if it's not like the responsibility per se, like I, you know, I couldn't drive them or I couldn't, you know, if I was too young, I couldn't stay home with them. But it's like that it's that mental portion. Like I had no innocence.

Like there was no sense of ignorance as bliss in my life. Like I was not free. I was not free to grow and develop in my own brain without like the harsh reality, like without knowing like what life was like. You know? And I think that's what really did me in. It's not even like my parents had me wiping ass, which like, yeah, I definitely helped them go to the bathroom.

I definitely would help get them ready. I definitely would do their meds if my parents needed. When I got older, I would drive them back and forth and do drop-offs so the group homes. But for me, the biggest impact was not being free to develop in my own mind as a kid. I was always ready for something bad to happen. Yeah, that's really tough to take. And I'm sure that a lot of people that are listening to this can actually probably relate with you. So we've talked about everything that you've gone through. We've talked about your mom.

And how was your dad with this? My dad is the polar opposite of my mom. And he just, he just deals with a smile. I like to call Mr. It's All Good. Like he definitely, he definitely, I'm sure, I'm sure he was sad, but I never saw him cry over it. I think my dad's way of dealing with it was being a very, very reactive partner. So like my dad did the showers and got them ready for bed at night and my dad did the lunches in the mornings. My mom did the notebooks and my dad did the, my mom did the scheduling for the ABA and my dad did the cooking. Like it was very much a partnership. I think the way my dad dealt with it was by being the best possible partner he could to my mom who he knew was going to steer the ship regardless.

You know, there was never, yeah, maybe also, I think how my dad dealt with it was also by throwing himself into me. Like, you know, daddy's little girl regardless. But I think he definitely knew that my mom couldn't show up. So like my soccer game or like whatever games after school because she had to be with the teachers for the boys. So like I like to say that like the boys and I both had our own parental representatives. my mom was the boys, my dad was mine.

But I am seeing now there's so much that's coming, so much like healing and like just visibility that's coming out of this book. Like my dad especially, my relationship with him. Like after he read it, he sent me a long message that there's just so much he didn't realize what's going on. It's amazing that they're, and like they are, they just celebrated their 30, 36 they've been together for 36 years they just celebrated their 31st no I'm lying I think they just celebrate their 36 wedding anniversary something like they've been

together for like and they're like in love love like my dad calls her mama they're always kissing he's very very affectionate like he wants to be around her like this is like this is not a man that like stays at work to be away from his wife like they're very in love and I think that's probably the only reason that our family survived. That's a really great story and I'm glad to hear it. I'm sure my listeners will be as well. So tell me a little bit about when you moved out and went on your own. I moved out of my parents' house and I realized like, wow, I have no identity outside of my brothers and my family situation. So I go into a worse depression than I probably ever experienced in high school that I never really realized I was experiencing.

And I'm trying to figure out how can I find my happy again. And I was a dancer my whole life. Like that was how when my brothers were in after school sessions, when their ABA people were over, I was at cheerleading. And then I went to dance until 11 o'clock every night. And that's what kept me saying that was for me. So I found a dance studio and I started dancing again. and I would go by myself to this class as like a 28-year-old and this girl came up to me and she was like, hey, my name's Alana,

like come sit with me and we just became friends. And one night I was driving her home from dance and she told me that she was writing a poetry book. I told her, I was like, what do you mean you're writing a book? Like, I've always wanted to write a book. Well, that's a perfect segue. So let's talk about your book a little bit and give us a little insight on what it's about.

This book isn't about the boys. This book is about me. I feel like the biggest thing for me in writing this was that, and this is going to sound ironic, like I wanted to give a voice to the voiceless. And in this situation, the voiceless is not my autistic brothers. They can't speak. It's like the siblings that we can speak, but we can't because there's other things going on that's more important. And I think that, like, it's so important for parents to, like, I almost like, I say this book is for siblings, but I also feel like this book is for parents of anyone. And educators just that, like, you need to pay attention to the people that don't necessarily seem like they need enough because if someone takes a backseat in the future, they're going to need everything they didn't get. You know, and I'm and I'm learning that now. Like I was, I was at six years old. I was a 30 year old. As a child, I was an adult. And now I am a full-blown adult and I feel like a child. Like every, every bad thing that happens, like my reactions, sometimes I feel like I'm having a tantrum. Sometimes I feel like I don't know how to deal with things. And it's because I was raised. my brain was trained in survival mode, you know?

And, you know, and it's, and this isn't about, not even about parents. This is about community, right? Everyone says it takes a village to raise a kid, right? Where was the village for me? Like, you know, we had all these, we, I come from a very, very large Italian family and bless them since this book has came out. I have gotten so many messages from aunts and uncles apologizing, you know, from like older people in my life for not seeing me or whatever. But like the times that I felt the most seen

were like when the teachers were around because they treated me like, like they wanted to know about my life. Like they didn't talk to me about being a sister. They were my person, you know. And I think like my book is about the village. It's about like your friend has an autistic kid and a typical kid. Maybe you should spend some time with that typical kid once a month and make them feel like they're just as important because at the end of the day, your friend that has that disabled child needs to give that disabled child their attention, help them. That's great information. Now, I know some of our listeners that may not have autistic children do want to help and they'll see someone with autistic children, but they just don't know how to help.

So do you have any suggestions on how they can actually help them? You can help by being normal and by like helping the typical people in those situations still have those typical experiences, you know? Like I like I never, we went on one family vacation. Like I think about like all my friends, they always used to go on family vacations. Like if someone maybe would have invited me with their family. Like my cousin, they took me, they took me on a cruise one year like with their family. And I'll never forget that. Like I have the great. memories from that trip. Like, there's the smallest things like when you think you don't know how to help, you do. That's so good to hear. We've covered so many good things here today. So what's the number one thing that you'd like to have people remember? My number one goal is to highlight the down because everyone loves the, everyone loves Anthony. He's the star. He's beautiful. He's got, you know,

he loves to sing and dance and he loves to be on camera. And, talking, he's a feel-good story. Nobody ever wants to talk about Michael. Yeah, I get that. And I'm just so glad that we was able to cover everything that we could. And just thank you for coming on today. It's been a real pleasure to have you. Thank you so much, Tony. I had so such a great time. 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, every one, every week. that you are not alone in this world.