How hospice became big business. A new investigation in The New Yorker reveals an industry that at times puts profits before patients.
Best-selling author Buzz Bissinger has relived the birth of his twin sons for nearly three decades. Gerry came first, weighing just over two pounds. But Zach, born three minutes later, suffered brain damage from a lack of oxygen. Gerry had no serious complications –- he became a teacher and is studying to earn a PhD. Zach bags groceries and will likely do so for the rest of his life. But while Zach accepted his 8-year-old comprehension skills, his father struggled to do the same. Buzz’s youngest twin remained a mystery to him until the two men took a cross-country road trip together. Diane and her guest discuss how he found peace with the fact that his son will never grow up.
- Buzz Bissinger Author of "Friday Night Lights"
Read An Excerpt
Excerpted from FATHER’S DAY: A Journey into the Mind and Heart of My Extraordinary Son by Buzz Bissinger. Copyright © 2012 by H.G. Bissinger. Used by permission of Houghton Mifflin Harcourt. All rights reserved.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Buzz Bissinger is the best-selling author of "Friday Night Lights," a prayer for the city and "Three Nights in August," all works of narrative non-fiction. His latest book is something totally different, a memoir about his autistic son, Zack.
MS. DIANE REHMIn it, Buzz describes a road trip that helped him understand the son who had remained a mystery to him for nearly three decades. The book is titled "Father's Day" and Buzz Bissinger joins me in the studio. He is the Pulitzer-prize winning author of four books, including "Friday Night Lights" and we will take your calls throughout the hour, 800-433-8850. Send us your email to firstname.lastname@example.org. Feel free to join us on Facebook or send us a tweet. Good morning, Buzz, it's good to have you here.
MR. BUZZ BISSINGERGood morning.
REHMThank you. And Buzz, you've said that you wanted to write this book for a long, long time. Why did it take you so long?
BISSINGERWell, I wanted to write it initially because the birth of the twins, Jerry and Zach, was so utterly traumatic. They were born in 1983. Jerry was the first one out by three minutes and weighed 1 pound and 14 ounces. Zach was the second one out and weighed 1 pound 11 ounces and tragically had some birth, brain damage.
BISSINGERAt that point in time, male twins that small, that premature, did not live. It was a miracle that they survived and, you know, journalist, author, you're always mining territory and, you know, they were a miracle to me, that showed the sheer will of their fight to make it.
BISSINGERAnd so I thought about it and I remember I mentioned it to an editor and she said, no, now is not the time. You really need to wait until the boys are older when certain decisions crystallize. And so I always took notes and I always took notes, but I felt when Zach became an adult, now was the time because, among other things, there's the crucial, absolutely wrenching choice of where he should go.
BISSINGERShould he be in a group home? Should he stay with his parents? All parents of disabled children face this and I have no resolution except, frankly, for the first time, I'm able to think about it.
REHMHow soon did you know that there was something wrong for the long-term?
BISSINGERI think we knew at the very beginning. I mean, I remember him -- I was actually there when he came out of the womb and then, mercifully, a nurse took me away because it's just there were -- It seemed to me like there were a million doctors and million nurses. You knew that it was iffy and it was going to be traumatic.
BISSINGERThey told us fairly soon that he had oxygen deprivation which is what caused the damage. He was intubated constantly. He was in intensive care in the hospital for seven and half months and came back on oxygen. And we just knew that something -- he was going to be different, something was going to be wrong. And, you know, it obliterated every dream I had, not only of fatherhood, but being a father of twins.
BISSINGERYou know, you think, God, I'm going to have twins. It's fantastic and you think they're going to be mirrors. Jerry miraculously had no side effects so all my life, it's been these two mirrors except that one is unblemished and moving up the curve and, you know, Zach in many ways, was flatlined.
REHMFlatlined, not really...
BISSINGERTo some degree, he would show sparks of lucidity. There's a lot I learned about him on this cross-country trip that I took that is the basis for "Father's Day." And you're right in the sense what makes Zach complex is there would be this moment, these sparks and you would, you know, I would get excited. Maybe it's irrational, but I think parents do this.
BISSINGERYou know, he's going to make it. One morning he's going to wake up and everything is going to be gone, but his progress was very, very slow and his comprehension level that of, probably, an 8 to10-year-old. That really is not going to change. I mean, I think he's going to be like that the rest of his life.
REHMTell me about Zach as a very young child and how he and his twin brother interacted or didn't.
BISSINGERThey sort of did, they sort of didn't. Zach's communication skills were very, very limited. Then, you know, he had no real friends. Jerry was 6. Jerry had friends. Jerry would have them over. Zach's only way of getting attention and communicating would be to disrupt, turn off the television set.
BISSINGERIf they were playing a game, he would steal a piece. Jerry got angry and Jerry also felt embarrassed. You know, I'm embarrassed by my brother and then, you know, we would take Jerry aside and say, Jerry, you have to show more understanding, which was unrealistic. I mean Jerry was 6 years old, too. I mean, you can't tell a 6-year-old to be understanding of a 6-year-old.
BISSINGERSo really, up until high school, there was tension, but I think in high school, as Jerry became more mature, more assured of himself, it turned into a relationship of love and protection. I mean, within the book, there's a -- to me, it's one of the most poignant moments where I talk to Jerry. I said, Jerry, you know, you're the inheritor, when I'm gone and your mom is gone and that's an awesome responsibility.
BISSINGERAnd I remember it was in New Canaan, Conn. at a diner. It's hard to believe there are diners in New Canaan, Conn., but he said, dad, if he has to live with me, I'll take him in and he was in his early 20s at the time. And I said, Jerry, you're a better man than I am and I meant it.
REHMYou talked, too, you mentioned marriage, your wife. A friend of mine who has two grown, fragile (word?) sons, one who is in a permanent facility, another who is in a group home and who is able to work somewhat, has said to me that for the parents of children with such difficulties, the marriage either becomes stronger or breaks apart.
REHMHow did it in your case?
BISSINGERWell, in our case, it broke apart. I just think -- and I think there were several reasons and "Father's Day" is a very honest book. I think when you have two kids, when they're first born and you don't know if they're going to live, the stress is enormous. Jerry got out of the woods fairly quickly. Within two and half months, he was breathing on his own. But Zach, every day you go in, you know you have those infernal monitors, his breathing rate would be good and then it would go down and then the alarm goes off.
BISSINGERYou're up and down, up and down. The stress was unbelievable. And then, I am very success-oriented. I am ambitious. I don't really recommend the level to which I took it. I couldn't get it out of my head, you know. I worried about work, work. I worried about, you know, who is doing what and I think my wife basically said, I don't have time for you anymore and I don't have time to reassure you anymore.
BISSINGERI mean, we have two children. Who knows? They could both die and one of them is going to have problems and I just can't do this. And I think that's the other reason that we split apart. She got tired of my being unable to get off the success train.
REHMHow long were the two of you together after the boys were born?
BISSINGERI think we broke up -- they were about a year and a half.
REHMA year and a half?
REHMAnd who had the boys?
BISSINGERWe split custody. I was actually at Harvard on a Nieman Program. They would come for me for two weeks and then go back to Philadelphia with my wife for two weeks. And then she actually did move to California. Her husband got a job working there for a newspaper and I had them during the school year actually until they were 13.
REHMUntil they were 13?
REHMYou must have had some help?
BISSINGERYou know, I did have help. I mean, I want to make it clear. Zach is ambulatory. Zach is very verbal and he has no physical side effects. I mean, he is able to work. He can work menial jobs. I had -- I mean, I did remarry and that marriage didn't work either, but she was terrific with the boys so I had that help. And then for a period of time, you know, I took care of them on my own.
BISSINGERWhen Zach turned 13, his mom moved back and she moved to a place called Haddonfield in suburban New Jersey and I knew it was time for Zach to go with her. She'd always been a good mom and Haddonfield was perfect. It was self-contained. He could walk around. He wanted freedom. All kids want freedom and he couldn't have freedom where I was in Philadelphia.
BISSINGERHe could walk around the block, but then I was worried if he strayed too far, you know, something would happen. And I have to be honest, Diane, I felt a sense of relief. I couldn't get through to him. I mean, I tried. I tried to find common ground, you know, movies, television, sports, the thing I could do with Jerry, school work and I couldn't do it. And I just felt this is not doing him any good and it's not doing me any good. He needs to be in a different environment and Jerry stayed with me.
REHMBuzz Bissinger, he's the Pulitzer-prize winning author of four books including "Friday Night Lights." His latest is titled "Father's Day: A Journey into the Mind & Heart of My Extraordinary Son." You can join us, 800-433-8850. Send us your email to email@example.com. Feel free to join us on Facebook or Twitter. So the thrust of your book is that you decided to go on a cross-country trip with Zach...
REHM...after you had taken Jerry to Europe, but you did not feel you could take Zach to Europe.
BISSINGERYeah and I mean, and Zach expressed concern and we just -- Zach can get antsy, Zach can get picky. We asked him and it was a good faith ask, but he said, I just don't want to go.
REHMThe strangeness of it...
BISSINGERThe strangeness, the length of the trip and, yeah, the strangeness, you know. Zach is all, his brain, it's all in the concrete. It's all right-hemisphere oriented, which is concrete thought. He doesn't have abstract thought so going to a new place, you have to interpret things. So his mom's family was going to Spain for two weeks. He did not want to go and I had him for two weeks and I wanted to do something really, really special.
REHMAll right. We'll take a short break here in the conversation with Buzz Bissinger on his book "Father's Day." Short break and right back.
REHMI'm talking in this hour with Buzz Bissinger. He's the author of the brand new book titled, "Father's Day: A Journey into the Mind and Heart of My Extraordinary Son." The focus of the book is his son Zach who is autistic. He is now 28 years old. He is totally capable physically, but he is autistic as was, I gather, Buzz, diagnosed when he was quite young. How old?
BISSINGERYes. Diagnosed with autistic-like symptoms among other things. I mean, I think the diagnosis came when he was 5 years old.
REHMFive years old.
REHMSo, in thinking about this trip, you did not want to get on a plane because you felt that he might get antsy, he'd feel confined. So you thought about a car trip.
BISSINGERYeah. And I also wanted to spend concentrated time with him. You know, you go on a plane ride if we went to Chicago or, you know, did it in little skips, it would not have been concentrated time. I wanted to focus on him. I mean, I -- it's not that -- I love Zach to death, but I wanted to see if by spending a lot of time there was a way I could break through and perhaps see things that either I sublimated or really didn't know about.
BISSINGERNow as it turned out, Zach actually said, you know, if it comes to flying or driving, I'd rather fly. So that was a little, you know, glitch in the works. But we worked out a route that would appeal to him because of the way he thinks. We went back to places where we had lived before, which he really likes.
REHMAnd doing that did what?
BISSINGERZach is a savant. And savantism is having genius-like qualities in an otherwise dark and cognitive landscape. This is in the area of calendaring. So, Diane, if he went to you -- if you went to him and say, Zach, what day did October 23, 1992 occur? He would tell you the day of the week. If you said when's your birthday, he would ask once and he would remember it the rest of his life.
BISSINGERAnd his recall of events stretching back 20 to 25 years wherever he's been is phenomenal. So he likes to go back. And one of the things I discovered, if memory for him is not memory I think as we see it. It's almost like he's back in the present. It's almost like he can see where he's been. And he loves seeing people that he knows and he loves seeing buildings and places. He gets very, very excited. And so I knew that would appeal to him.
REHMAnd did that generate conversation between the two?
BISSINGERWell, at the beginning it was, you know, look, I was nervous. I was stressed. I'm doing all the driving and I wondered, you know, could -- what would we talk about. Would we sustain? Would the driving be too much? And, you know, I admit, at the beginning, I would get frustrated and volatile. And I got lost all the time. And one of the great discoveries I made about Zach, he's very steady in the storm.
BISSINGERSo this is not a hypocrital. He was the one calming me down. He showed a lot of empathy that I really had never seen. More than empathy, I truly believe that in his own way he felt, my dad's getting upset and I'm his son and my role is to try to calm him down and reassure. He said, you know, dad, it's going to be okay or he would rub my back. And it would soothe me and it would kind of bring me back, you know, to earth because of my temperament. And that was marvelous to me. I never had ever seen him do that.
REHMDid you perhaps in any way think of yourself in any way responsible for Zach's autism?
BISSINGERI think you inevitably do. I mean, I say that in the book. I mean, I just say, you know, this was my fault. I can be very negative, pessimistic. Somehow I contributed to this. It may be rational, it may be irrational. But you have that guilt and you carry it all your life as you carry all sorts of different emotions, which is what the book tries to get across. I did. You know, what did I do? I must have done something to cause this.
BISSINGERWhy did my son get those three minutes? Why didn't he? If he gotten those three minutes, he would have been like Jerry and that will always haunt me.
REHMAnd do you think that that got in the way of your relationship with your wife as well?
BISSINGERYeah. And I think she felt guilt as well. I think she felt, you know, I think as a mother she felt guilt. You know, you're going to feel guilt. You know, why couldn't I carry the full term? Could I, you know, she -- and trust me, she was an incredible fighter. She was on bed rest on two weeks before the -- really a month before the kids were born. She got through sheer will four extra days, otherwise they would have died.
BISSINGERBut I know she felt terrible guilt. You know, why couldn't I go to term with them? Why can't I go to 27 weeks or 28 weeks? It would have made all the difference in the world. And so when you bring that back into your marriage, I mean, there's just so much going on, you get lost. And as I say, you know, I said, hey, what about -- it sounds awful but, you know, what about me? What about my needs? I just think, she said, Buzz, I can't deal with you right now. And I think she tuned out.
REHMAnd what about the guilt that Zach's twin Jerry must feel?
BISSINGERWe talk about that in the book. Jerry -- and this is the first time he ever had said this to me. I sensed it. He said, I feel tremendous guilt. I felt, you know, why did I get those extra three minutes. Why was it me? Why wasn't it my brother Why can I do all the things that my brother will never do? A full-time job, masters in education, driving a car. He's going to get married. He's going to have kids. Zach is not going to do any of those things.
BISSINGERBut I also feel Jerry had a few learning glitches of his own that he worked out. And I always felt that he was terrified that somewhere within him Zach was embedded, some aspect of Zach that would cause him to kind of lag behind. And so I think it was twin-phobe. I think there was relief on one hand and I think there was terrible guilt on the other.
REHMBecause perhaps for a brief while Jerry believed that growing up with a twin, not just a brother...
BISSINGERThat's right, that's right.
REHM...that they share those qualities.
BISSINGERExactly. And Jerry did have some learning problems. And I remember there was a moment in eighth grade I thought that Jerry needed to be in a special high school. I just thought he was lagging behind in learning. And I remember saying that to him and he just said, dad, don't do this, please. Don't do this. I will work as hard as I can and I will keep up. You cannot do this to me. It will destroy me.
BISSINGERAnd I think he was saying, dad, I love Zach but I'm different. I'm different. I don't want to go to a special school. My brother goes to special schools. I don't want to do that. And you know what, he made it. He made it.
REHMHe came through.
BISSINGERHe did. He came through. There was a sea change in the way he worked. He works very, very hard. But I think he was saying, please, please. I just don't want to be -- I don't want to have that tagline, I'm special needs.
REHMAnd how did Zach do in school?
BISSINGERZach was in special schools all his life. He was in what they called an approved private school for about six years, which is a specialized school for brain injured children. He was always in self-contained classrooms. In high school he went to a public high school with an excellent self-contained program. Basically his skills, they taught vocational skills. His high school teacher, and I thought he was exactly right, said I could spend two years trying to teach him math where he can add 100 plus 100.
BISSINGERIt's not worth it. I want to teach him vocational skills and social skills so he can be productive in the workplace. You know, which he is.
REHMWas he disruptive in the self-contained school?
BISSINGERNo. Zach has never been -- he's never been disruptive. He has never acted out. He does have a very loving temperament. It's not his style. He's actually very intentionally funny because, look, he doesn't know how to lie. He doesn't get jealous. He's not competitive. He's happy for the success of others. And I mean this. I mean, he's pretty much the opposite of me, where I spend much of my life comparing myself to others.
BISSINGERSo he just says what he thinks. And it can be hilarious, often unintentionally. But then beautiful things pop out of his mouth. He just...
REHMGive me an example.
BISSINGERWell I just remember we were, you know, I played the Peggy Lee song, you know, "Is That All There Is?" And I -- it's mournful and I like it. I love her voice. And I asked Zach, just I was curious. I said, Zach, what do you think it means. And he paused and he thought and he said, well, you know, that's life I guess. And in his own way that's true. That's what she's saying. There's ups and downs and that's life.
BISSINGERNow, I don't care if he meant it or not, I mean, he was exactly right. I remember saying another point, I said, do you know what love is. And he said, well, you know, love is love. And that's as good a description as I've ever heard.
REHMThere are a number of callers who'd like to join us. So, let's open the phones. Buzz Bissinger is with me. His new book titled, "Father's Day" is a journey into the mind and heart of his extraordinary son. Let's first go to Toledo, OH. Good morning, Denise, you're on the air.
DENISEHi. Thank you for having me.
DENISEI actually saw, is it Bissinger?
DENISEI saw you on "Pierce Morgan" last night.
DENISEMy question is, I realize taking care of extraordinary children takes a lot of resources. Did Zach qualify for Medicaid or any other governmental aid as he was growing up?
BISSINGERNot growing up. Zach now is on Social Security, so he does get Social Security for disability and therefore will be entitled to health insurance. Look, there's no doubt that Zach was lucky in that his parents had resources. And I believe for those who don't, particularly because the incidents of prematurity is very high, particularly in urban areas among single mothers.
BISSINGERAnd hospitals do a great job of saving, but not a very good job of any kind of social work or what the reality is going to be. So Zach was very lucky in that regard.
REHMDoes that answer it, Denise?
REHMAll right. Thanks for calling. One of the places you visit on your trip is Odessa, TX.
REHM"Friday Night Lights" was set there and some people there are still angry with you because you had written about open incidents of racism. How were you received?
BISSINGERWell, there's been a lot of cooling of the temperature. There are going to be some people who always hate me. I have been back before. And, you know, once the movie came out they sort of didn't forget about me, but the book kind of went into the background. But I'm always a little nervous going there. I don't know what's going to happen. I don't know who I'm going to run into. Now ironically, Zach loved Odessa more than any place on the trip.
BISSINGERHe talks about going there constantly. There's a particular family that he loves. Somehow Odessa, TX has now become our favorite vacation spot. And we are probably the only two people in history who actually go to Odessa, TX on vacation. So we'll probably go within the next six months or a year because he just adores it and adores this family.
REHMAnd do the people there return that?
BISSINGERThey do. And it's an interesting question because one of the things, you know, Odessans can be Odessans and they become too obsessed with football and went totally out of control. But they're down to earth and they have no pretense. And one of the loveliest moments of the book is that they just embrace Zach for who he is. And he's talking and one of the guys says, hey, Zach, do you want a beer?
BISSINGERNow he'd never taken a sip of beer in his life and he said yeah because he wanted to be one of the boys. And he takes a sip and everyone's clapping him on the back. And he was, I mean, he was one of the boys. And it was just so great to see. And I really, really attribute that to the attitude of Odessans because there's a tendency I think either to coddle too much or to back away.
REHMBuzz Bissinger, his new book is titled "Father's Day" and you're listening to "The Diane Rehm Show." Let's go now to a caller in Fairfax, VA. Good morning, Alfred.
ALFREDGood morning, Diane. How are you?
ALFREDI just like to say to the father, I work with the homeless mentally ill. I help them get housing and help them just get benefits and move on with their lives. And one of the biggest things I try to impart to them from my own experience with my own mental illness, my own mental health issues is that the word can't shouldn't be in their vocabulary. And I just would like to say that all of the empathy that you show your son and all the beautiful empathy that he's able to show you, just have a little bit of hope and faith that, you know, maybe marriage is a possibility.
ALFREDMaybe moving on in his life not to the degree that you may have once hoped or dreamed of for your son, you know, it's a possibility. It might be all that he ever wants to be. I'm sure he is. But the thing is that in this society I've noticed that people just don't have empathy. And family connectivity that you have shown and that his brother's shown, I mean, that's just beautiful. And not everyone gets that.
ALFREDAnd I think that that's just one of the key indicators for people is just to have their family, to have love and to have the support of their society around them. And I just commend you for writing the book and I just would like to just offer you’re the word, can't is, axing it out of your dictionary. That's all. Thank you.
BISSINGERWell, I think -- you know what, I think you make a great point. And you should never say never. And, look, I mean, if Zach falls in love and it seems right and they can take care of each other and mutually benefit each other, there would be no one more happy than his mom and myself and everyone around him. So I think you're right. I mean, I think it may be hard, but you never know what happens in life because, frankly, on this trip I found out so many things about Zach I didn't know. And the wonderful thing about Zach is he continues to grow.
REHMYou know, there is a place in the book, around page 192, where you're in Las Vegas and you try to have a conversation with Zach. Talk about that conversation that you tried to have with him.
BISSINGERWell, the one stop we really made to a place we had never been was Las Vegas. I guess this was my "Rain Man" fantasy that, you know, Zach, because of his savantism, could card count and, you know, we'd make lots of money. And I think I was trying to make this prom date that we would have a beautiful meal and we pal around the casino like I would do with Jerry. And, you know, we go to a show and it would perfect.
BISSINGERStay in a beautiful hotel room and none of it worked. Zach was overwhelmed. But there was, interestingly, we did have a conversation. And we were at dinner and I said, Zach, do you know what sex is? And he acknowledged that he did. And I probed a little bit further and he finally said, dad, you have to stop asking me these questions because I don't really know what you're getting at. I don't know how to answer them.
BISSINGERAnd it was the first time in his life in a very gentle way he had basically said, dad, back off.
BISSINGERI have my own identity. I'm not -- there's a tendency, you know, where these kids can't make any decisions. I think the previous caller is right. And they can't, you know, I'm his legal guardian. His mom is his legal guardian and he was saying back off, I have an identity, I have feelings of self-worth and I have feelings of privacy.
REHMBuzz Bissinger, the book is titled, "Father's Day." Short break here and more of your calls when we come back.
REHMAnd welcome back to a conversation with Pulitzer-Prize-winning writer Buzz Bissinger. His latest book is titled, "Father's Day: A Journey into the Mind & Heart of My Extraordinary Son." He's talking about his son Zach, a fraternal twin born three moments after his twin brother Gerry. Apparently Zach had oxygen deprivation and is now autistic. He's 28 years old. Buzz Bissinger is writing about a trip the two of them took when Zach was 24. Let's go to Charlotte, N.C. Good morning, Charlotte.
CHARLOTTEGood morning, Diane. I so much appreciate Buzz being able to put his point of view in words. When I was 10 years old my brother was born with cerebral palsy. And I guess I felt like ever since that my childhood ended then. Eventually my parents' marriage ended. And I don't wanna make this about me, but I just know that my brother lives in a group home because my mom made sure there were group homes available. She helped found the group homes...
CHARLOTTE...that take care of adults with special needs. And what's important is that not only do they have special needs, but they have special gifts. And you just have to dig for them.
BISSINGERWell, I think what you said was absolutely beautiful. And I really credit your mom and you for what you've done. And we, you know -- group homes that would be the ideal. Parents have done that, founded group homes in the community in which Zach lives and it has his friends. He does have friends. He loves his friends. And one of the things I learned on this trip, I have to begin to think in terms of what is in his best interest; as opposed to thinking what I think is in his best interest.
BISSINGERHe needs to be with friends. He does have a social life. And I think that has to be honored. And I think the best place probably to do it would be the right, you know, group home. There's some marvelous ones. They go on outings all the time. And I think he could do it.
REHMTo Dallas, Texas. Good morning, Dick.
DICKGood morning, Diane. I've been listening to this with a lot of attention since it started. And I believe the author, Mr. Bissinger really loves his children, but the first part of it all revolved around I, me, over and over again. And I think that he missed out on a lot of what was going on with his kids. And yet it finally took a journey of self discovery with his child. I think a lot of these answers were there all along he just didn't take the time to see it.
BISSINGERWell, that's why there's a lot of I and me in the book. That's why the book is so brutally honest about myself. I mean I, you know, whether you appreciate it or not is certainly up to you, but I felt in this book I had to describe myself honestly as the type of man I am and the type of father I was and say very openly that because I was addicted to success at an early age because my parents coveted it, I did miss a lot of things. And I lived inside my head to a large degree. It has nothing to do with, you know, loving Zach. And I was the one who took him to specialist after specialist after specialist.
BISSINGERBut you're right. I mean you're right and that's why I'm in the book. Not to be self indulgent, but to show that part of the problem all parents have is, you know, what is inside them and the kind of aspirations and hopes they have for their children based on their own backgrounds. And it was not until this trip that I began -- I found acceptance, then you find appreciation and then you find joy.
REHMAnd here's a tweet from Doug who says, "Parenting disabled children begins with grief over the destruction of our own expectations for them and then moving on."
BISSINGERIt's a beautiful way of putting it. There is grief. There is self pity. There's always the plateau of love, but the book expresses this. There's frustration, there's rage, there's anger, there's a sense of feeling cheated. And I'm the first to admit it took me longer to move on than others, but at the end, I believe this is a book of great uplift and a testament to a son who I realize has a soul, has a character and really is the man I admire most in my life.
REHMHere is an email from Jessica who says, "As a sibling of an individual with severe disabilities I've been very grateful for all that my older brother has taught me about the world over the years. I would say that John has been the greatest teacher we have all had and will have in life. I would ask about another level of responsibility that an individual with disabilities brings to all in the family. How has your son been a teacher to shape how you live your life for the better?"
BISSINGERWell, I could say, for the sake of a book or a radio show, that Zach has changed the way I live and the way I behave, but that would be dishonest. I think a lot of memoirs do that because everyone wants a clash of cymbals and a happy ending. He hasn't changed me in terms of caring about success and ambition. What he has shown is a new definition of character. I always equated character to intellect or even to moral stance or even to a big house and a big car. That's not character. Character is taking every ounce within you, how big or how small and working and working and working to create a life and a world for yourself.
BISSINGERAnd Zach has done that. Now whether I carry that lesson with me to change myself -- I'm not gonna say that I do, but that's why I say that I admire him more than anyone. And many, many disabled children -- I was just at a high school graduation and, you know, it was absolutely beautiful. And I know that everyone of those kids wearing that blue cap and gown struggled and struggled and struggled to get to where they were. And I think about it and I begin to get choked up.
REHMDid Zach go through to graduate high school?
BISSINGERZach graduated from high school by state law. He then could stay in the school until 21. It was ceremonial, but he got a degree, he got a certificate of attendance. And I've seen the pictures. The enormous smile on his face. He went to a school -- no. He was never gonna be invited to the parties or anything like that, but the kids there treated him wonderfully. And this is part of what I learned, that these moments are so important. And you have to, as much as you can, grant these kids moments of their independence and self worth.
BISSINGERI mean Oliver Sacks put it best. It's not surprising. He said within all of us, whatever the impairment, big or small, resides this need to be whole. And I believe that. And I believe that's part of the soul of Zach and many children, whether they're impaired or not. The problem is -- and this is sort of seen in the book -- often the parents may be the ones who are impaired, whether by expectation, whether by guilt, whether by denial, you know, whether by sort of trying to imprint their own background onto their child.
REHMWell, talk about your own background and your relationship with your parents.
BISSINGERYou know for better or worse I came from a very high-powered background in New York City. I grew up on the upper west side. I went to private schools all my life. Success was assumed, you know, everyone had gone to great schools. My father went to Dartmouth. My mother went to Smith. My grandfather went to Harvard, which doesn't mean anything, but I at a very early age felt this is the way to get ahead. This is the way to please Mom and dad, particularly Mom, is to get on that success train. My mother was very aware of what other kids were doing. And I got on it. I wanted to be the achiever. I wanted to be the chosen one.
REHMWere there siblings?
BISSINGERI had a sister. And frankly, I always felt that my mother had a very kind of contentious relationship with my sister because she was not achieving up to the level that my mother wanted. And I just sat there and said I don't want a piece of that. I don’t want a piece of that. I wanna succeed 'cause I want Mom happy. And trust me, it's not a life that I recommend upon anyone because success becomes an addiction. And like all addiction it lasts for a very short period of time and then you want some more. I think I'm better, but it's never, ever gonna leave me. And you know, I'm prone to depression and anxiety and I talk about that in the book.
BISSINGERAnd then also I think it made it harder for me to come to grips with a child -- maybe he will marry, but I can guarantee you he's gonna be bagging groceries for the rest of his life. And that's really hard for me. I've never seen him do it.
REHMWere your parents alive when the boys were born?
BISSINGERThey were. They were. And I have to say they were absolutely wonderful grandparents. When they came to the hospital the day they were born and they literally came every weekend from New York for a year. So they were wonderful, wonderful grandparents. And sadly neither of them is no longer with me or my sister. They died back to back in 2000 and 2001.
REHMTo Baltimore, Md. Good morning, Dave.
DAVEHi, good morning, Diane.
DAVEThank you so much for sharing your story, Buzz, and actually all of your stories. I'm a teacher at a public school in Baltimore County and we have one of those inclusion classes that you described.
DAVEThere is actually a pair of brothers. One of whom is in the -- I’m sorry, self-contained class. And then the other who is in the inclusion classes. And I've worked with one who is in the inclusion classes and his father -- I've always interpreted a -- I don't know if defensiveness is the right word, but there's a heaviness whenever we interact with the father, whenever we're talking about the boys. So I guess my question is multifaceted. Did you experience that growing up with Zach? Have you gotten past that?
DAVEAnd if so, as somebody who will continue to interact with these kinds of children because I'm a career educator, how can we more effectively interact with the parents of these students to help the students and the families and the parents feel part of the community and better educate ourselves, as well as the other students to just more fully provide a holistic environment?
BISSINGERWell, you know, it's a great question. I did feel that heaviness. I particularly felt that heaviness when he was probably in the best school he ever was, which was a private school for brain-injured children. But that meant all the children there had disabilities of one sort or another. And it was really hard for me. Every time I went on that campus I felt uncomfortable. I would go into the classroom and see all these beautiful boys with all sorts of disabilities. It broke my heart, but I have to be frank, I wanted to get the hell out of there as quickly as I could. I felt much better about Zach when he was in a public high school in a self-contained classroom.
BISSINGERWhat I appreciated and the one thing that worries me, as I'm sure you know, is funding for special ed is always on the edge.
BISSINGERAnd that worries me a lot. I felt better about Zach and some parents agree with this or not. He had a teacher in high school who I felt was both realistic and showed a pathway for his life, which was, you know, he's limited in what he can learn. But he can be part of society. He can hold a job. He can take care of himself. And this is a realistic goal that I want to teach him so he can work. And some parents chaffed at it, but I felt really good about it because it showed -- you know what -- he can be very productive in his own way.
BISSINGERAnd I have to say that the school set a great tone where he was with other kids. They loved him. They appreciated him. He was an assistant manager on the wrestling team. So they did want to make him a part of things as well. I credit this teacher tremendously. And tragically there's no longer a self-contained classroom at that school.
REHMWhat does self-contained mean in a sense?
BISSINGERI mean it pretty much spins that he will spend virtually all his time, with the exception of certain almost non-academic courses, in a self-contained classroom with kids with other disabilities. Zach was with about seven or eight kids with disabilities.
REHMAnd you're listening to "The Diane Rehm Show." To Somerset, Ind. Good morning Carol Joy.
CAROL JOYHello. There was a caller earlier -- and I should say that I listen to you and enjoy your program daily...
JOY...whenever I can. But there was a caller earlier who was saying about I can't. I had a grandson, our very first one, and his mother did everything to have a healthy baby. Turned out that he has cerebral palsy and retardation from, they think, the baby having oxygen cut off. But every time his doctors would tell him you can't or you never will be able to walk, you never or you can't talk ever, that's when he stuck his whatever he had in and accomplished what he was told he can never do.
REHMSo he tried harder each time.
JOYI don't know what it was. They told him he couldn't and he never would be able to do this.
BISSINGERIt's interesting. I talk about that in the book. We all have a blue box. Mine was a blue file cabinet filled with reams of reports from psychologists and psychiatrists and psychopharamacologists about all the things Zach couldn't do. And I repeat them in the book. And then I finally stopped 'cause I realized, you know what, I know my child better than these guys do. I saw these surface diagnoses that were ridiculous. He was given medication without any thought. And I said, I'm not playing this game anymore. I know my child and I wanna encourage my child the right way. I know his limitations, but I also know his strengths.
REHMAnd finally to Little Rock, Ark. Good morning, Charlie.
CHARLIEHello, Diane. And hello, Buzz.
CHARLIEHow are you doing?
REHMQuick question, please.
CHARLIEYes. I wanted to Buzz to elaborate for the listeners on his own ordeal in writing this book and how long it took him to write it and some of the self revelations that it caused him.
REHMAll right. We've got just a tiny bit of time, Buzz.
BISSINGERWell, it took me much longer than I thought. It took five years or four years. I thought it would take two because it was very, very painful to write 'cause I had to open the vein and let it out and be as honest as I possibly could.
REHMBuzz Bissinger. His new book is titled, "Father's Day: A Journey into the Mind & Heart of My Extraordinary Son." Congratulations on the book.
BISSINGERWell, thank you.
REHMAnd I hope Zach stays well.
BISSINGERHe will. He's doing great. And happy Father's Day.
REHMHappy Father's Day. Thanks for listening all. I'm Diane Rehm.
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