Movie, television and Broadway star Joe Mantenga and his wife Arlene discovered that daughter Mia — at two and a half years old — was autistic. Joe shares his journey with listeners of raising an autistic child: finding the right schools and searching for needed resources. He also talks about the special relationship between Mia and her younger sister Gia.
Dad To Dad 5 – Actor Joe Mantegna’s journey with his daughter Mia, who has Autism
David Hirsch: Hi, I’m David Hirsch. This is the Special Fathers Network Podcast, stories of fathers helping fathers.
Joe Mantegna: People say to me, “What’s it like to have a daughter with autism?” I said, “I don’t know what it’s like not to.” I can’t explain that. It’s a tough question. It is what it is.
David Hirsch: That’s our guest today. He starred on Broadway, in the movies, and on television. Joe Mantegna. Joe is the father of two daughters, Gia, and her older sister Mia, who has autism.
Mia Mantegna: Joe Mantegna is more than just a movie and television actor. He is a special person helping special people with autism. And I’m the luckiest reporter on earth, because he’s my dad.
David Hirsch: That’s Mia Mantegna from a video interview with her father, Joe.
Mia Mantegna: What is your proudest achievement in dealing with autism?
Joe Mantegna: Today’s certainly one of them. I mean, this one’s going to come right up there. I mean, the fact that I could sit here and be interviewed by you and be part of this Inclusion News interview is a very proud moment for me.
Tom Couch: For 21st Century Dads, this is the Special Father’s Network Podcast, stories of fathers helping fathers. Our host is the founder of 21st Century Dads, a man who’s devoted his life to increasing awareness of the importance of being a father and who has helped dads to better fulfill their paternal responsibilities. Here’s David Hirsch.
David Hirsch: Being a father is very important to me. Being a good father means being a successful role model for your child, helping them be happier, more fulfilled, and productive members of society. I’ve started a number of charitable organizations designed to increase the role of fathers.
One of them, the Special Fathers Network, is a dad to dad mentoring program for fathers raising children with special needs. We’ve been interviewing some exceptional fathers of special needs kids, and we want to share their stories with you.
Joe Mantegna is a special person and special father, and I’m thrilled that he’s our guest on the Special Fathers Network Podcast. Joe, thank you for taking the time to be a podcast interview for the Special Fathers Network.
We’ve been friends for more than a decade. You and your wife Arlene have two daughters, Gia, and her older sister, Mia, who has autism. So let’s start with some background. You grew up in Cicero, Illinois, was it?
Joe Mantegna: Actually, I grew up in the west side of Chicago, which would be the Garfield Park area. But then around eighth grade, so I was about 12, 13, we moved to Cicero. So that’s where I finished eighth grade and then also went to high school and junior college. So it was kind of split time between the west side of Chicago and Cicero.
David Hirsch: Tell me something about your family, and growing up on the west side of Chicago then.
Joe Mantegna: Well, I mean, I don’t think it was so untypical, at least it seemed so to me. I mean, it is what it is. I mean, you knew who your neighbors were, people from all different walks of life. My dad was in the insurance business, but he was fairly disabled. He had contracted tuberculosis as a young man and was hospitalized during the entire World War II in a sanitarium and only had one lung. And so he was kind of limited in what he could do.
And because of that, he had to retire early, like in his fifties. My mother wrapped packages at Sears. But their main store was in Homeland, in Arlington, here in Chicago. So the neighborhood was like a lot of regular, I guess you could call it just middle class people.
We never owned a home. We always lived in an apartment, initially in a very big apartment building. After that we moved to a building my grandparents owned, and we lived upstairs with my grandparents, which is why I became very close to them. When my dad passed away, my mother actually moved in with my grandparents
Everybody’s got a story. My story, it’s got its ups and its downs, its good aspects and bad aspects of growing up. But I don’t think it’s anything unique or special. So I can’t say, “Oh, well that’s the reason for this or for that,” you know what I mean? Like I say, everybody’s got a story.
My dad battled alcoholism, and he was hospitalized when I was about 15. I think a lot of it came because he was just so couldn’t handle the fact that he was in ill health all of his life. He was from a very active background and grew up on a farm and all that. I think it just bothered him.
But he overcame that with the rehabilitation and stuff. In other words, if I had to say what was the little hidden thing in a closet that you’re growing up with in your life, what made it a little different than Beaver Cleaver’s life, it probably would have been that. But beyond that, life was pretty good. I have no complaints about my growing up in Chicago.
David Hirsch: So you mentioned that there was a lot of diversity in your neighborhood. Was it an Italian neighborhood? You were an Italian family.
Joe Mantegna: Not, not predominantly. There was just as many Italian, Irish—there was a kid next door who was Mexican. I had a couple Jewish friends. But you got to remember that this was the era in Chicago, in the 50s. Ultimately, that’s when the neighborhood really changed, when they had what they call blockbusting.
I mean, there was a pretty much of a racial divide, and pretty much your African Americans all lived on the other side of Roosevelt Road in Chicago. And then there came this time later on, I remember it kind of came up, about how all of this was done illegally. In other words, they call it blockbusting. A bunch of these realtors got together and realized that they could start moving some black families into these neighborhoods.
We can scare these people, there will be white flight, what they called it, and they’d sell their homes very cheaply. And then these realtors would sell them at a great profit to these black family. And that’s kind of what happened on the west side.
And we were among the last to go, because one thing I really give my father credit for, he did not have a prejudiced bone in his body. I mean he brought us up to feel like race has nothing to do with nothing, I think probably because he identified with them. Because he was an insurance man, he sold a lot of policies in black neighborhoods. And he felt they were working people too, you know. So we never had that prejudice, to the point where a black family bought the building we were living in, and we were paying rent to them. And we were one of the last families to leave.
But you kind of had to at that point, because there was violence connected to it. When the first black families moved into the neighborhood, I remember a night coming home on the weekend from visiting relatives, there’s smoke in the air. And it was because they tried to burn this house down some black family had bought just down the block.
But little by little, the entire neighborhood changed. It became an all black neighborhood, which it is today pretty much over in the west side. And it is what it is. So I mean, that was what was going on, but it was pretty diverse up to that point, I would say, because I look in my grammar school pictures at the mishmash of all kinds of people.
David Hirsch: So thinking about those years, did you have any siblings when you were growing up?
Joe Mantegna: I have an older brother. He’s eight years older than I am. And because of my dad’s health, he was very influential in my life, probably because of the age difference. Because the times when my dad did work, he traveled. He was in the insurance business, and they would send him to local areas in the Midwest.
So my memory of my dad was a strong one of taking him to the Midway airport on Monday morning, and then he’d be gone for two weeks, and then picking him up at Midway airport. They did that a lot, so I wouldn’t see my dad very much except every second weekend, like for the whole weekend. And of course he would get vacation time, and then he was home all the time. That was kind of routine.
Because of that, my brother filled in. My brother did a lot of my early education. He’s the guy that took me to the library. He was an avid reader, and he kind of got me interested in books. “You should read this. You should read Catcher in the Rye, you should read Ray Bradbury. You shouldn’t read this. The Iliad. He taught me how to tell time. I mean, these are things I remember about my brother.
David Hirsch: So one of the things we have in common, sadly, is that, our moms passed away earlier this year. They played a huge role, my mom did, in my life, and I suspect your mom did too, because she lived as long as she did, to age 101 was it?
Joe Mantegna: 101, yeah.
David Hirsch: Yeah. So how would you characterize your relationship with your mom, or maybe what’s your favorite memory of your mom?
Joe Mantegna: Well, I think part of the reason she made it to 101 is that there really not a window, like one spectacular feature, about my mother. She wasn’t the most educated person I knew. But she was solid as a rock. The thing about my mother is she did not let stress come into her life. There was a dichotomy between her and my father. Especially if you’re from an Italian American family you can relate to this more, because my father was Sicilian, and then my mother’s Bari, and among Southern Italians, that’s almost like interracial marriage.
My dad was kind of a typical Sicilian guy. I mean, all my relatives on that side had a serious side to them. But even when they laughed and smiled, you kind of wondered, “Is there some ulterior thing behind this or something that’s kind of dark there?”
Well, my mother’s side of the family, they all thought they were Frank Sinatra and Dean Martin, and there’s a more jovial kind of thing. And so in a way it was a yin and a yang, but it was a good balance between the two. And again, my brother and I are a result of it.
But my mother, what was great about her is…let me give you an example. I mean, there’s a million examples. But just recently, in the last few years, at my mother’s wake, my brother happened to mention something. He said, “Here’s something my brother was probably not even aware of, but when he started doing this television series Criminal Minds, after a whole career of being a theater and mostly motion pictures,” our mother called my brother.
She says, “I need to talk to you about Joey.” And he goes, “What is it?” She goes, “I’m worried about him.” And my brother goes, “Why?” She says, “Because he’s only working an hour a week.” Because she saw that I was on this TV show, and she has no general concept of show business. And I really believe for a long time she didn’t really know what I did for a living. Kind of, but it didn’t matter.
And in a way that was a good thing because of the way it made it hard for me to get to wound up in what I do for a living with my own mother. I remember when I won the Tony award, she had no concept of what that was. Of course when people would ask her, she goes, “Yeah, he won like the Oscar, but for the play.” So it was that kind of thing.
But it was a good thing. My mother was very, I don’t want to say naïve, because she wasn’t. She was very street smart. She was very simple in her lifestyle, and everything was pretty cut and dry. It was either this or was that. She didn’t ponder over things. You hear about people, oh, they have anxiety, or they have to take pills, or they have to go to a psychiatrist. Not my mother.
David Hirsch: Thank you for sharing that insight about your mom. All this might be a little bit more about fathers and the influence that fathers have. I think we have acknowledge that moms play a really important role in our lives as well.
So you’ve talked a little bit about your dad, and if you had to think back on your relationship with your dad when you were younger and then before he passed, what do you remember?
Joe Mantegna: The thing I remember most is the respect he had from everybody else, because one thing about my dad, he was not that educated, but he educated himself. To the point when I was young, I used to almost make fun of it. Because my friends would come over when I was a freshman, sophomore in high school.
And my dad was already kind of disabled at that point. So he’d be home all the time. He took care of the house, he cooked, he did everything. He’d get winded just walking up a flight of stairs. I have this image of him lying on a sofa. I’d come over with my friends, and he’d be reading, and I’d say, “What are you reading?”
And he’d be reading Shakespeare. And he read all the works of Shakespeare. And I’d look at my friends, like, I don’t know, I think he’s crazy too. Why would this guy in Chicago in the early sixties be reading Shakespeare? I wasn’t even reading Shakespeare, and I was intending to be an actor. But that he was very educated. He would always read the Reader’s Digest, and always play word games, and this and that.
And because of that, the whole family depended on him. If there was any crisis, they would go to my dad. And I don’t think I appreciated that until many years later. He never went to college. He never finished high school. But he really loved to learn. And he always wanted to world travel and never had the opportunity. He traveled a lot in the Midwest because it was his job. He never had the money or the wherewithal or the ability to travel.
And I’ve done a ton of it. Part of the reason I do it, or embraced it when I did do it…I love going to places, but I hate the travel part of getting there. But I embraced it because I feel so grateful to be able to visit the places my father would only talk about. A dream of his would have been to make a trip to Europe, to go to the ancestor’s homes. And I’ve done it. I’ve been to these places today.
He grew up on a farm in Oklahoma. My grandfather came over from Sicily at the turn of the century, along with a lot of others. I just went there just two months ago. First time visiting my grandfather’s grave. They came over from this one town in Sicily and worked in the coal mines in Oklahoma. He worked for five years, saved $500, and bought a 50 acre farm from the Indians. My brother has the records and the bill of sale and tickets off the boat and all that stuff.
He bought this farm. And because there’s just one little pocket called Krebs, Oklahoma. When you drive through, there is a sign that says “Krebs, Oklahoma is little Italy.” And it’s based on the fact that for the most part, these Sicilian immigrants came over from this one part of Sicily.
They must have heard from one of the guys, “Hey, there’s these coal mines where you can work, and if you work long enough, you can make money to buy your own farm.” Which was a dream come true, because in Sicily…I’ve been to the town of [?] where my grandparents were from, it’s like at the top of a mountain. The only thing you can grow there is old. Forget about having a life as a farmer.
So now there’s this 50 acre farm that’s still in my family. We still own that farm. The only reason we have the farm is because my grandfather died on the farm. He got an appendicitis attack in 1928, and so when he passed away, my grandmother picked up the eight kids, and her only connection was relatives in Chicago. She picked them all up and went to Chicago. But the farm was paid for.
So I have these very fond memories of my dad. I wish I’d gotten to know him better, and I wish I’d gotten to spend more time with him as an adult. Because I think I was 22 when he died, and I was just starting to kind of….
He got to see the first professional play I ever did, Hair. Then he died while I was still doing it. So he never got to see any of my career or anything. But hey look, half of my chromosomes are his. So I owe a lot to him, and then I have my memory.
David Hirsch: Well, thanks for sharing. So you made reference to the fact that your dad’s dad died in 1928. So you didn’t know him personally.
Joe Mantegna: No.
David Hirsch: I’m wondering if you got to know your other grandfather, your mom’s dad?
Joe Mantegna: I did. I was very close to my other grandfather. It’s like I said, we lived upstairs from them, and they were very instrumental in raising me. So my grandparents were very important. Because like I said, when I would go to school, my mother would be at work, my father would be out of town at work for the most part, so I would walk home for lunch from grammar school, and my grandparents would always be there to give me lunch
And they spoke Italian, so I kind of picked it up. And it was later in life when I became an actor and I was going to be gone a year for the first time, touring with this theater company out of Chicago, that my grandfather begged me to just go visit the relatives that were in Italy that we always had heard about. But then they never came here and we never went there. All we knew was they existed. So it was a favor to him that I went and did that.
To make a long story short, I’ve become closer to those relatives, literally, than I am to most of my relatives here. So I’ve been going there on and off since 1975, and they come here. And I’ve been able to explore my roots that way, which has been great.
So I never knew my paternal grandfather, I certainly know as much as possible about his life. And my maternal grandfather was very close to him, and my grandmother, and luckily they lived to be well into their late eighties. And like I said, having lived with them, that was as close as you can get. And he was just an immigrant, came here and worked for the railroad, worked for CTA, worked as an electrician. It was like his first job and his last job. He applied for the job as an immigrant. I guess he knew a little about electricity, and he wound up working for the CTA all his life, like 50 plus years.
David Hirsch: It sounds like you’ve got some good genes as far as longevity, particularly on your mom’s side.
Joe Mantegna: Oh, yeah. That has worked out. I mean, I think my dad’s death was kind of a fluke, because two of his brothers died from the same thing. They think they contracted it from a cow on the farm or something. But outside of that, the younger kids in the family lived to be in their eighties.
David Hirsch: But let’s talk about your education. You went to the Goodman School of Drama.
Joe Mantegna: It was the Goodman School of Drama at the time, and now it’s called the Theater School at DePaul University. So it was 1967 to 1969 I was there.
David Hirsch: So you originally were into music, from what I remember.
Joe Mantegna: Yeah I was in a band. It was a band in the sixties, and to this day, I’m very close to the band Chicago, because we used to tour with them when they were actually called the Missing Links. I’ve been friends with them for over 50 years now.
Then I started doing musicals. Actually my initial theater work professionally was doing musicals. I did the play Hair in Chicago for over a year. Then I did the national tour. Then I did Godspell in Chicago for about a year.
Then I went to Broadway with the play Working, and I have two songs actually on that album. Then my career just took a turn primarily through the work I did with David Mamet. Like much of life, you play the cards that are dealt you. You go where the heat is. And so my career took a turn in that direction, and I just followed the turn, and it worked out. I’ve got no complaints.
David Hirsch: Going back to the music part, what is it that you did? Were you a vocalist or did you play an instrument?
Joe Mantegna: I was the lead singer and the bass player for a band called The Apocryphal. So we were a moderate success back then. I mean, there were a lot of local groups, and some went on to make it, like the Buckinghams and the New Colony Fixed and the Ides of March and the Flock and the Shadows of the Night.
And then there were groups like ours that, you know, we had a couple of records that did a little something, but not all that much. But we were popular. We worked a lot. I mean, it actually took me years as an actor to kind of catch up to how I was doing as a musician, because we played every weekend. We always had work.
David Hirsch: Well you’ve been very fortunate, career-wise. You’ve been in somewhere in the neighborhood of a hundred movies and TV shows. Most people recognize you as the voice of Fat Tony in The Simpsons.
Joe Mantegna (clip): Where’s the money? When are you going to get the money? Why aren’t you getting the money now?
David Hirsch: Agent David Ross, as a part of the super successful TV series Criminal Minds.
Joe Mantegna (clip): Good afternoon, ladies and gentlemen. I am SSA David Rossi of the FBI. One man’s logic is another man’s crazy.
David Hirsch: The 13th season or something, right?
Joe Mantegna: We’re in our 13th season right now.
David Hirsch: How have you been able to balance this sort of demanding career taking you in all these different directions and your family at the same time?
Joe Mantegna: That’s all I know. But the other thing is, there was never any exclusion there. In other words, we made the decision early on, my wife and I. We’ve been together a long time. We both were in the play Hair. That was 1969, so we’ve been together 48 years. So we made the decision early on, because we always did stuff together.
In other words, I was working as an actor for a good amount of time before we even had our first child. And I was involved in a lot of travel. Well, my wife always traveled with me. She dabbled in different things. She never had anything like a career thing that kept her grounded. She came with me and we would do this thing together
And we had all these locations I would go on. So when the kids were born that didn’t change. In other words, I didn’t want to have the lifestyle like my dad had to go through, where he’d be gone for a couple of weeks and wasn’t part of our life for that amount of time. I knew what it would have to happen on occasion for short periods of time, but for the most part, we always traveled.
At first there were three of us. The second child was born, there was four of us. And it wound up being of great benefit for a lot of reasons. Probably primarily for my oldest daughter who does have autism, the travel and the exposure to all kinds of different places, and just the way different places, even different countries do things—I think in the end, it was all beneficial for everybody.
In a way that’s ultimately why I gravitate towards doing a television series, because as the kids got older…I could care less about taking them out of school when they were little, for like a few weeks at a time. Because my feeling was, they can learn the capital of Indiana some other time. But they’re going to spend these two weeks with their father and mother in Maine or in Rome or wherever. We went to Russia, Australia. I mean, we’ve been all over the world.
So I’m thinking, is there a better benefit for them staying in class as a third grader and learning, uh, what’s an isosceles triangle, or to be with us in Australia? You know what I mean? So those are the decisions we made, and I’m glad we did. But I think it changes. They don’t want to go. They’re getting to be teenagers, and they’ve got their lives, and it becomes more of a disruption.
That’s when I made the personal decision that it’s not a good idea necessarily to change their lifestyle anymore. So I have to change mine. And I was fine with that cause if my career ended today, and if they said, “Well, you’re never going to make another movie as long as you live,” I could live with that. I’m happy with what I’ve done. So finding a TV series that has legs, it’s something I enjoy doing, and working with the same people, which is very similar to working at a theater company—it’s been great.
And I get to come home at night. Every night I sleep in my own bed. And then they still have three months hiatus, and that’s when we do our traveling and other things that most people kind of do on a regular basis in terms of a schedule.
David Hirsch: Well, it’s great that you were able to take your family on location as you were traveling and expose them to as many things, and in contrast to your dad, right, who only talked about or maybe dreamed about.
Joe Mantegna: Exactly right. And that was always on my mind. It’s almost like a bucket list. Here’s another place, thing, event, that if my dad…if there’s anything to this stuff, and you’re aware of this, I know you’ve got a smile on your face, because this is all things you wish you could have done. And I’m going to do it in your stead.
David Hirsch: So let’s talk about the girls. You have two daughters. Mia is the older one, and Gia is her younger sister. How old are they now?
Joe Mantegna: Mia is 30, and Gia is 27.
David Hirsch: When Mia was born, where were you at the time?
Joe Mantegna: When Mia was born, I was here in Los Angeles. I’d just finished shooting a movie, House of Games. She was due to be born in August of that year, and this was June. It was the first week of June. And I’ll never forget it, because I was supposed to have a bachelor party for my friend Richard Gillman that night. It was Friday, June 5th. And Arlene had this premonition that something was wrong, because the baby hadn’t moved for a few days, and it was just something bothering her.
So she says, “I’m just going to go to the hospital. I just feel something’s wrong.” And she called the doctor, because she felt, “Maybe I’m being silly.” Thank God the nurse said, “Look, it’s Friday. If you don’t come now, they’re not going to be around on the weekend and you’re going to be nervous all weekend. Come to alleviate your anxiety.”
So she goes to the hospital and they checked her out, and they discovered all her amniotic fluid was gone, and the baby was in terrible distress. They said, “If we don’t deliver this baby right now it’s not going to happen.” So they did an emergency C-section, and Mia was born at one pound, 13 ounces. She was one of the smallest babies delivered that year in California.
We hadn’t even started our Lamaze class, and the baby’s here. She was supposed to be born three months from now. She was born at 28 weeks out of 40. To make the long story short, we go through months and months—she’s on a monitor, she’s this, she’s that.
She had to have a couple of broviacs, where she would have tubes going in through main arteries to keep her alive. And she was in a special incubator for two months. And finally, when she got to be about four and a half pounds, they let her come home. But she was on a monitor for about a year.
But she was a strong kid, and she dodged every bullet. I saw kids in that neonatal intensive care unit…even at the transfer hospitals, because the hospital she was born in wasn’t equipped to handle a baby that small. They sent her out to the Tarzana Medical Center in a special ambulance.
But when we brought her home, she was small, but she had nothing wrong. And I saw babies that were heavier in weight that died or were blind or had terrible lung problems and all kinds of problems. And it looked like Mia had dodged every bullet. And it wasn’t until a few years later that we discovered that she had autism. She was about two and a half when those tendencies started to really appear.
And then we realized that, “Well, we didn’t dodge one bullet.” And I’m not even saying that her prematurity had anything to do with it, but there is a higher incidence of it among babies that are that small. So at least we had that to point to, whereas a lot of parents don’t even have that. In other words, to this day they can’t really say, “This is the exact cause of why that happens.” But in our case, it definitely didn’t help.
David Hirsch: That’s remarkable that she was born that premature and that she made it for a couple, three years, and sort of got to have more of a normal growth pattern. I can relate to that just a little bit. Our second child was part of a set of twins, and because of the complications the second was not viable.
She was born prematurely, I think at 32 weeks. And she was in the neonatal intensive care unit for a couple of weeks with all the monitors and tubes and everything, and it was like a science fair project. And you just learn that it doesn’t always happen like you might envision. You have a baby, mom and baby come home from the hospital and you’re onto a greater thing. Sometimes there’s pretty serious hurdles like the one you just described. It gives you a better appreciation for life.
So going back to when she was two and a half, what was it that sort of tipped you or Arlene off, that something might be wrong
Joe Mantegna: Actually we were in New York, where we spent that whole year in because I was doing these two projects, a Woody Allen picture, and The Godfather. We also went to Italy for that. So we had basically relocated to New York for about a year. And that was the year Gia was born, because she was born in New York. So Arlene’s whole pregnancy happened while we were in New York.
But it was also during that time that we realized, Mia was just not making the same kind of eye contact. We really realized a lot more when she was around other kids her same age, because you can just see that her development was not quite the same. She wasn’t talking, her eye contact was a little bit off. She was a little sound sensitive, touch sensitive. I mean, as we learned later, these were all pretty much markers for this kind of a thing.
So took her to a regular doctor. Then of course, he said, “You should go see a specialist about this. Because it’s not like she’s got a disease or something, but there’s something going on here.” And so when we did, they basically said, “Look, I think your daughter has autism. She’s got like seven of the ten markers.” You’ve got to remember this is 1990. They know a lot more about it today than they did then. It was a bit of a rarity then.
And of course it was a devastating diagnosis to get at that moment. Then you kind of get it, and you take it in, and then you say, “Okay, now what? Now what do we do?” And then it’s been that ever since, “Now what do we do?” So you do the things you think you should be doing, which is explore the world out there and then try to get as much information as you can, and make your choices and make your decisions, and live your life.
David Hirsch: Now was she able to stay in a regular educational environment, or did you seek out private options?
Joe Mantegna: This was one of the good things, I think, that we learned due to our lifestyle and our travels and this, that, and the other. In other words, when she got to be school age, we figured, “Well, okay. They obviously have special classes for this,” and they did.
We had an early enrollment, like at four years old here in California, in Los Angeles, and it was in a special needs class. So all the kids in there had different kinds of issues and stuff. And we seemed to think, “Well, okay, this is what we have to do. This is what the option is, and you do that.”
But then when she was about six years old, I was doing a movie in Chicago. And while we’re in Chicago, of course, again, we tried to find a place where she could go to school, that may have the right kind of special ed class for her. We went to this Kathryn Cooke school over there near Old Town in Chicago, and we’re talking to the principal. And she says, “You should meet Karen Fendler, who teaches the first grade class.” Which was the age Mia was, for first grade.
So we go to the first grade class, and it was a normal first grade class. So we thought we were just going to go to her for advice, like, “Well, maybe since you are a first grade teacher, which special class should we put her in?” And it turned out they didn’t have a special class, because it’s a private school. It wasn’t like a public school that has to have these classes. She goes, “No, we don’t have a special class, but she doesn’t need that. I have a sister with autism. I know what this is about. She’ll do just fine right here.”
And then she stands up in front of the class of six-year-olds and says, “This little girl’s name is Mia. She has a thing called autism. She’s a little different. She may start to talk to herself, or she may stand up and walk around the room, and she may do this, she may do that. We’re all going to help her out, right kids?” And they’re all like, “Yeah, okay.” So she says, “Oh, we’ll be fine. Mia’s going to be fine. She’ll spend the day with us.” And my wife and I looked at each other, and our jaws are dropping, like, “What?” And that’s how we learned about inclusion.
And so Mia did that. She was in that class for that whole semester while I did the movie, and it changed our lives. And to this day, Karen Fendler has been a big person in her life. She used to fly out here every Christmas until her knees got too bad. But, anyway, to make a long story short, we came back to LA. We couldn’t quite immediately do anything different. We had to stay in the public school system, because that was the only way to get the resources, because of what they call the IEP, and they get all this stuff.
So in other words, you have to be able to protect your child with all this…you know, get in the system. Because you never know what you’re going to need in terms of that. And thank God there are these laws that say, “Look, every kid has to have an equal education.” And because of that, it gave us the freedom to be able to check out all these different public schools and find the ones that would get it and understand and be best for her. You don’t have to go to the school that’s right around the corner, because it might be the worst possible place for her.
So she was in different schools here in Los Angeles from grammar school on through high school, but they were always schools that were perfectly fit for her. And it wasn’t until the fifth grade that we were really able to totally include her. To go to her class was like just a regular class.
And what we learned from Karen Fendler was the way to do it was to walk into that classroom on the first day and just tell those students, whether they’re fifth grade, sixth grade, freshman, high school, “This is our daughter Mia.” We actually wouldn’t have me there initially, just because she wouldn’t quite understand why we’re doing that. But we would tell the other kids, “Look, our daughter’s going to be this kind of a person. She’s going to have these little quirks and tendencies, but you all could be of great help to her if you’ll just understand that.” And that’s all the kids want to know. They just don’t want to be surprised with, why is this kid talking to herself? Why when a loud noise happen, she screams, you know what I mean?
So this is what we learned to do, and it made it very successful in her time in school. The kids loved her, and I think they profited by it. Just like my daughter Gia did, in the sense that they matured by it, because they learned what it was like. When I grew up in grammar school, there were those special needs classes. When you saw those kids, you went, “Oh, those kids, those are the kids in that special class.” When those kids are in your own class, there’s none of that bias. All of a sudden it’s like, “Oh, that’s Mia. And she has autism. That’s why she’s that way. But that’s fine.” You know?
So I think it’s a two way street. I think Mia profited by being around just regular kids. So her peer group is not other kids with different kinds of disabilities, which really doesn’t help anybody. And the kids profited by it because they understand that everybody’s different, and not every kid is going to be a cookie cutter in terms of what’s going on with them, you know.
David Hirsch: That’s a great point about acceptance and acknowledging the fact that people do have differences at a young age.
Joe Mantegna: That’s been our outlook on life with this, that the world is not going to adapt to Mia. Mia’s got to adapt to the world. I can’t change the world, but I can change how I taught her how accept and adapt to it. That’s not always easy, but that’s all we know. You do what you do.
David Hirsch: So were the girls able to go to the same schools, then, or not?
Joe Mantegna: Initially, yes. But after that, no. I mean, because that’s when we realized we could do better for Mia. We thought it would be cute if they would be at the same school. But then we realized, well, first of all, we had to keep Mia in a public school, because like I said, it was just better in every aspect because of the resources available to us. For Gia, we thought we could do better, only because of the area we live here in Los Angeles, the public school that would have been convenient for her, we could do better.
And so Gia wound up spending from first grade through high school in a Episcopalian school called Campbell Hall, which is a wonderful school. It’s not a public school, but it’s a private school that gave her a great education. Probably, if I had to do it all over again, I would have maybe, weighing everything….because all I ever had was a public school education, and I did two years of junior college, acting school. And I know things are a little different now, I think you have to take every school on its own merit.
If you find the right kind of school, whether it’s a public school, private school, it doesn’t matter. If you get the right faculty and the right people in charge, the right environment, that makes all the difference. The amount of money you spend on tuition is going to have nothing to do with it. That’s no gauge of how good it is.
David Hirsch: Or you can get a great education in a public school or a private school, right. It’s like anything.
Joe Mantegna: Oh, without question.
David Hirsch: Even though the girls didn’t go to the same schools, did they develop a close relationship?
Joe Mantegna: Oh, we have a lot of questions. And that’s what’s been great about Gia. She relates to me in a whole other way that we can’t cover, because we’re parents. We’re always going to feel like that with the first time baby, and she had this thing as autism. Gia is almost less tolerant of all that, which is a good thing. In other words, she doesn’t give Mia the same breaks we do, because for her, it’s like, “Hey, this is my older sister, but I’ve had to be like the oldert sister for all her life.”
And she especially gets it now. But there were periods where you could see Gia almost resented the fact that Mia had this autism. It was like, “Why the hell does this kid act like this? And why are we accommodating it? Why are we letting her get away with it?” That type of thing.
But all it’s done has been to mature Gia into being a young woman now at 27 who is so sympathetic to all kinds of people from all walks of life, because she knows what it’s like. She knows what it’s like to be a sister who’s three years younger, but yet is really the older sister.
And she gets it that at some point in our lives, Arlene and I aren’t going to be around. Gia understands that. And I’ve told her, “Look, I don’t expect you to be your sister’s caretaker. I’m not going to put that on you. I’m not going to say your sister’s got to move in with you and do this or that. But you do know you’re going to be responsible for her.
And she gets it. Actually she’s the first one to say, “Hey, no, I would like nothing better, but have a life where it will be Mia, me and the cats. If I get married, and my husband too. That’s great too.
But they have a great relationship, and a unique and rare one, one I can’t even relate to, because I don’t know what it’s like to be a woman and have a sister like this. I mean, it is what it is, and being autistic is just one aspect of it, but that’s not the core of it. That’s not the bond they have. So that’s not a problem.
David Hirsch: And when you think back over their growing up, there was probably a point at which Gia, who is biologically younger but intellectually older….
Joe Mantegna: Absolutely.
David Hirsch: Is there a story or two that comes to mind that really sort of solidified this important relationship they have, or maybe something that was funny or different?
Joe Mantegna: Oh boy. I guess I’d have to think about that. I do remember how distinctive it was over time, when Gia would get frustrated and say, “Why does my sister have to be like this? Why does she have to have autism?” And then that shift happens where she matures and gets it. You have explain stuff. You have to say, “Look, your sister’s not doing this because she wants to do it.”
Then introducing other people to her as well, letting Gia experience what Mia’s world is like. I’ll bring her to her classes, to see how she relates to people outside the family. To me now these are very fond memories, because it got us to the place we are now. Several people say to me, “What’s it like to have a daughter with autism?” I say, “I don’t know what it’s like not to.” I can’t explain that. It’s a tough question. It is what it is. Like I said, everybody’s got a story.
David Hirsch: You talked about the support structure that the school provided, the public school system. Were there other support structures? Special Olympics?
Joe Mantegna: No, the physical thing about Mia—I mean, it’s impacted her in that way a lot. Her small motor skills are incredible. Like she works a computer and the phone like nobody’s business, but her larger motor skills were never quite fully developed. But then in high school, they had a special acting program at the Birmingham high school, and she auditioned for it just like any kid. And they accepted her. And she was the first and only time they ever had somebody with autism. And for her whole four years of high school, she was in the school within the school. So in other words, she’d spend her afternoons with the theater department, doing plays and stuff like that. And her audition case was she read Cher’s soliloquy to Sonny when he died, only because Mia had memorized it. And she did it as Cher, as weird as that sounds.
But that’s one thing she never lacks. Some people with autism have that kind of almost antisocial behavior that they don’t like to interact with others. It’s the direct opposite of Mia. If anything, she tends to overreact. She doesn’t have that edit button. She’ll walk right up to you. “Hi, what’s your name? What’s your birthday? I’m Mia.” No matter who it is, where she is.
We’ve almost had to teach her some about boundaries. I was like, “Hey, there are certain environments where it’s best to be discreet. I mean, it’s great that you’re friendly and all that, but sometimes, depending on the environment, you gotta be a little more careful.”
David Hirsch: I think I remember seeing something, I can’t remember where, Joe, that she was like a reporter or doing some reporting.
Joe Mantegna: Yes, that’s right. She interviewed me, I think it was after I got my star on the Hollywood Walk of Fame.
Joey Travolta. This is John Travolta’s brother. Joey Travolta had this group called Inclusion Films. It’s this wonderful organization. What it does is they take kids in with different disabilities, autism among them, and they teach them aspects of the film business. And Mia went to this school for a couple of years, and it was just great.
And so when I got my star on the Walk of Fame, Joey, in cooperation with one of the local TV stations here, thought it would be good idea, because that was part of their training with the school. So they had Mia interview me as my daughter interviewing her dad, who just got a star in the Hollywood Walk of Fame.
Mia Mantegna: Receiving a star on the Hollywood Walk of Fame is one of the highest honors given to an entertainer in show business. Joe Mantegna will be honored with one later this week. Inclusion Films went to catch up with the actor and talk about something very personal and dear to his heart, helping people with autism.
When did you learn I had autism?
Joe Mantegna: We were living in New York city. This was in 1990, and we were just about to have your little sister. We started to notice that your speech patterns were a little different than a lot of the kids that were your age. You were about two and a half at that time. We thought we should probably look into this.
Mia Mantegna: How much did you know about autism before learning I had autism?
Joe Mantegna: Well, I have to say I probably didn’t know very much about autism. I certainly got to know quite a bit about it from that point on.
Mia Mantegna: What is your proudest achievement in dealing with autism?
Joe Mantegna: Today’s certainly one of them. I mean, this one’s going to come right up there. I mean, the fact that I could sit here and be interviewed by you and be part of this Inclusion News interview is a very proud moment for me.
Mia Mantegna: Joe Mantegna is more than just a movie and television actor. He is a special person helping special people with autism. And I’m the luckiest reporter on earth, because he’s my dad. This is Mia Mantegna reporting from Inclusion News.
Joe Mantegna: Yeah, that was pretty special. It was very special for me. And it was quite something.
David Hirsch: I thought it was very powerful.
Joe Mantegna: Yeah, I would watch that, because that’s what I would’ve thought to do but hadn’t done. I’m so glad we had that chance to do that.
David Hirsch: Well, it reminds me, one of the things we’ve been doing here in Illinois over the last 20 years is having kids write essays about their dads, step-dads, granddads and father figures, and we’ve had well over 400,000 kids do that.
Joe Mantegna: That’s great.
David Hirsch: The dads are really moved. It’s really difficult to touch the heart of a father more than through the words of his children. And in your case, it wasn’t just a written essay, but it was something that was closer to what is that you do occupationally, right? It’s the interacting, camera, lights, everything going on.
So to pull back a little bit, what are the most important takeaways that come to mind when you think about having a daughter with autism?
Joe Mantegna: Well, I think the most important thing for me, it’s just been….I’m going to touch a little bit on where I keep saying, “Everybody’s got a story.” Part of it is just that. We don’t all live in Beaver Cleaver world, like the movies or the TV shows, where life is just perfect. Every once in a while there’s this little problem that you can just kind of fix by talking in a way or having a little group meeting. We’ll solve it and move on.
Sometimes greater things happen and will impact your life a little greater. But it’s okay. I mean, I’ve always kind of embraced more of an Eastern philosophy on life, in the sense that there are no guarantees that it’s all going to be a box of chocolates, and that it goes from point A to point B. Like it’s a graph that goes from the bottom to the top on the curved line 90 degrees up.
But no, it’s more like a rollercoaster. It’s more like it’s going to have tremendous highs and tremendous lows. The trick is to just kind of hang on to the car in the rollercoaster, and don’t get thrown out of the car. Because when you get through the scary parts, there’s going to be some great parts coming up, you know?
But you can’t avoid the ride. You can’t avoid the bad parts of the ride or the good parts of the ride. And some people can get a better ride than others. But you have no control over that. So it’s that old saying, “You control the things that you can control and accept the things you can’t.”
So I’ve certainly learned the accepting the things you can’t part by having Mia. Somebody said to me today, “If you could make a wish, and we’ll grant you this one wish, what would it be?” Instantly it would be, “Yes, I would wish my daughter did not have this autism.”
Because if we remove that, there’s nothing else on the planet earth that I would want, need or care about, and I would give up everything I have for that. Just take everything I own, put me down to zero. I’ll start at zero, because I feel I’ve got the potential. And then whatever comes, I’ll get by. But just make her perfect. I shouldn’t say perfect. That’s the wrong terminology. But let’s give her that even chance that we all had.
David Hirsch: So is there any advice that you would give to a parent or a father about tough situations?
Joe Mantegna: Well, again, it would almost have to be specific as to what advice they’re looking for. But at the end of the day, if I had to give that one general piece of advice, it’s just to think of it this way. If somebody asks you, “What’s it like to have an autistic child?” your answer has to be, “I don’t know what it’s like not to. This is my family. This is our life. So we will now go forward.”
Then you have to do it together. I think that’s a big thing. And I know there’s a lot of families that get broken up over this, you know? So one parent can’t handle it or whatever it may be. I’ve been around it, and I’ve seen it happen with families I know. And it’s terrible, because then you’re basically putting the burden often on just one of the two, who has to step up. And there were many cases where it was the mother, because it’s the father that will sometimes feel, “Well, a mom can handle this. I can’t.” I don’t mean that as a blanket statement
And that’s a thing— you can’t let, that, you can’t let that be a wedge between you. If anything, it should be something that brings everybody tighter together. And don’t be afraid to reach out and get as much information as you can. We tried all kinds of things. We did sound therapies, we did this and that. We traveled to different places. Like I said, because of my line of work, I was able to get exposed to stuff all over the world. But at the end of the day, there was no magic bullet. There was no one thing that said, “Oh yeah, this is the key. This will fix everything. No.
But every bit of information, every everything you do, every little class that you or maybe your son or daughter takes moves you forward. Like right now we discovered Mia has a savant ability with art, so she’s had a couple art shows. She had one of her paintings at the Sacramento state capital here.
And this just came out of my wife, God bless her. She would constantly push Mia to take all kinds of classes, whether it was piano, whether it was singing, whether it was arts, whether it was whatever it may be. And by taking the art classes, we discovered she has this incredible savant ability to look at something and then paint her own take of it. It’s almost like French impressionistic. It’s amazing. And she’s done very well with it.
David Hirsch: Do you think, getting back to the issue about doing it together, you mentioned the importance of trying to perpetuate your relationship. Obviously divorce in society is at a pretty high level. One out of two marriages end in divorce, but with families with special needs kids it’s estimated to be 75%, 80% or more, due to the added stress and pressure, maybe financial obligations for that matter. Do you think you and Arlene are closer as a result of it?
Joe Mantegna: You know, it’s hard to say, because what do you compare it to? But I’d like to think so. Because I look at it now, and I’ve said…it’s funny, I was just saying this to somebody yesterday who’s also in a long term relationship. We came to the conclusion that things are better now. Better now than it was even 20 years ago, 30, even before we had kids.
So I think there’s a natural growth that can happen. But also the fact that we did have children and had a child with that one little kind of twist to it, that special needs may have created a stronger bond with us. Because only the four of us know what it’s like to be the Mantegna family, and all of a sudden that makes us a very unique kind of family.
Just like your family are the only ones that know what it’s like to be your family, or the guy next door knows what it’s like to be his family. So yeah, I guess there’s no avoiding the fact that it’s helped bring us closer together and stronger together, because every day we’re together. It’s just one less day we’re all going to be on this planet. That’s what you’re doing, so you try to make it as good as possible.
David Hirsch: Good. So, I’m very thankful for your willingness to be involved with the Special Fathers Network and just be one of the dads that would be willing to take a call.
Joe Mantegna: I think being a dad is important. I mean, like I said, there’s a reason they’re called moms and dads, you know what I mean? It’s funny, even with the show I did, Criminal Minds, I’ve been on the show personally 11 years. And if you’ll get into the scripts about the crimes, and start examining the root causes for so much of it—even as a fictitious show, it’s still based on real incidences, or the writers are still basing it off of those things. And so often it points to, well, what were the parents like? What kind of upbringing did this kid have that they would turn into this? You know what I mean?
And that’s the way it is in life too. I mean, it happens that the perfect parents, wonderful people, can turn out a kid that turns out to be Hitler. I mean, that can happen. Sure. But there’s certainly a correlation that the leaf doesn’t fall far from the tree. If the tree’s in pretty good shape, it has a better chance of dropping a healthy leaf than one that’s not. So being a dad is 50% of that person’s chromosomes, and it shouldn’t stop there. It’s got to continue on as long as possible in a positive way. So that’s the way I look at it.
David Hirsch: And well part of its DNA, right? Your chromosomes, and then part of it is…
Joe Mantegna: That’s what I mean. You contributed that, but it doesn’t stop there. You can’t just say, “Okay, I’ve done my work. Bye, see you later. Good luck.” There’s a reason that kids tend to look like their parents sometimes, and have the same tendencies. You have a responsibility. You and this other person have created the human being. Now it’s your choice as to how involved you want to be with the caretaking of that child.
David Hirsch: Good point. So, was there anything else you’d like to add before we wrap up?
Joe Mantegna: No, not really. Just that I’m glad you’re doing this. I’m glad you created this thing. If it’s of any benefit to anyone out there, it’s all worthwhile. So I hope I added something.
David Hirsch: Well, Joe, thank you again for your time and many insights. As reminder, Joe is just one of the dads who’s agreed to be a mentor father as part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, you can go to the 21st Century Dads website, which is 21stcenturydads.org.
Mr. Mantegna, thank you so much for
Joe Mantegna: You’re welcome ,and good luck with this. I’m sure we’ll cross paths again over the coming months.
David Hirsch: And thank you for listening to this Special Fathers Network Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Again, if you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org. I’m David Hirsch, and thanks for listening to the Special Fathers Network Podcast.
Tom Couch: The Special Fathers Network Podcast was produced for 21st Century Dads by Couch Audio. To find out more about 21st Century Dads, go to 21stcenturydads.org.