JUDY WOODRUFF: Velo-cardio-facial syndrome is a genetic disorder that affects 1 in every 2,000 people in developed countries. The only disorder that occurs more frequently worldwide is Down syndrome.
Sufferers usually have a laundry list of physical ailments, as well as learning disabilities. For many, the diagnosis goes undetected for years.
A new memoir addresses the life of one young man with VCFS, as it is called, and his family. The author is 26-year-old Quinn Bradlee, and the book is called “A Different Life: Growing Up Learning Disabled and Other Adventures.”
We know you’re the son of two pretty prominent parents. Your mother, Sally Quinn, is a very well-known writer. Your dad, Ben Bradlee, the former editor of the Washington Post. And it’s great to have you all three here.
SALLY QUINN, journalist: Thank you.
BEN BRADLEE, former Washington Post Editor: For us, too.
JUDY WOODRUFF: So, Quinn, it’s pretty audacious for anybody to write a memoir, much less somebody who’s 26 and somebody with learning disabilities. How did you get the gumption to do this?
QUINN BRADLEE, author: Well, I went to a special school called Gow up in Buffalo, New York. And I saw kids there teasing each other, and I just thought, you know, “Wait a minute. There’s kids teasing each other at a special school for kids with learning disabilities.”
And I just thought there ought to be something done about that, because the whole point of going to a special school is for kids to feel normal with learning disabilities. And I just didn’t see that happening there.
Waiting for a diagnosis
JUDY WOODRUFF: The book is very honest. So much so, it's bracing at points.
Ben Bradlee, you didn't know the exact diagnosis of what Quinn had until he was 14 years old. But before that, you knew when he was an infant there were problems as he was growing up.
BEN BRADLEE: Oh, he had a rough, rough start. He had a heart operation when he was 3 months old and, I mean, a big heart operation. And then he had one other damn thing after another, and it seemed to me that he was 5 years old before he was part of the human race.
He learned how to deal with it. You don't get the feeling that you're in the presence of a disabled person at all. I mean, he has trouble reading, and he has all sorts of little troubles, but it's a collection of them that make it up.
And, I mean, if you didn't -- if we weren't here, I wouldn't be thinking about what he's got.
JUDY WOODRUFF: Sally, why did it take so long to get the diagnosis of velo-cardio-facial syndrome?
SALLY QUINN: Well, it was started by -- I mean, it was discovered by a man named Dr. Shprintzen, sometimes called Shprintzen syndrome. And it was only a few years before Quinn actually was born that he had discovered this. And it took 14 years.
So I think that it's just one of those situations where a syndrome -- people don't know, because it's harder to diagnose. I mean, if you look at a Down syndrome child, you can know right away just by looking at someone who has Down syndrome that that's what they have.
QUINN BRADLEE: We have, scientifically, if you will, abnormal facial features. But you walk down to -- you know, you're walking down the street, you can't point at somebody and say, "You have VCFS."
JUDY WOODRUFF: You write that some of the worst physical aspects of this have decreased. Are there still issues that you deal with, though?
QUINN BRADLEE: I think the only really main issue I deal with is my short-term memory that I have that I'm kind of infamously known for in my family. But that's the only thing that really bothers me.
Coping with bullying
JUDY WOODRUFF: For me, some of the toughest parts of the book where when you write about not having friends. What has that been like? And how have you dealt with it?
QUINN BRADLEE: Well, I've always kind of thought that maybe I'm just a loner and -- except for when it comes to having parties at my parents' house. Then I'm not really a loner anymore.
But, I mean, I have my, you know, few close friends I have, and I've learned that all you need in life is, you know, a couple of really good friends. Only you need -- you can really have one friend, and if you have one really good friend, then you're doing better than most people.
JUDY WOODRUFF: You also -- I mean, there are several things in here that you say you love, surfing.
QUINN BRADLEE: Yes.
JUDY WOODRUFF: What is it about surfing?
QUINN BRADLEE: Surfing is -- I go out there, you know, whenever I have a problem, jump in the water, and everything -- I just forget about everything. I forget about the money, you know, the houses, all the teasing, and I can care less about all that the minute I get out in the water. And it's just -- I feel like -- I almost feel like my soul is risen out of my body.
JUDY WOODRUFF: That's remarkable.
SALLY QUINN: We were talking about bullying, because there was a piece recently about bullying. And that was really one of the hardest things for Quinn and for us to have to deal with is how people would tease him, and Quinn's least favorite word in the world is being called a "retard."
But people can be awfully cruel for children who are different. And as a mother, you know, I'd call the school and say, you know, "They're bullying Quinn," and then somebody would get reprimanded, and then they would tease him some more. And, you know, it just -- it was really hurtful. I'm on a tear about bullying now.
JUDY WOODRUFF: You've been able to deal with it?
QUINN BRADLEE: Yes, I think, you know, high school is hard for everybody, you know, if you're cool or not. Because if you're cool, then you kind of have to live up to your expectations. I mean, if you're not cool, you want to be cool, and you can't have it both ways.
JUDY WOODRUFF: That's a good way to put it.
BEN BRADLEE: I think, also, Quinn's been around adults a great deal, because I had earlier -- older children before Sally, and they're up and out, and so he's been with us more than most children and certainly more than any of my other children.
SALLY QUINN: We've been Quinn's best friends, because for so long there were no friends, and we kind of created an atmosphere. We would invite all of our friends, like you all and your children, for Quinn's birthday parties, and so, therefore, there would be all these people, and it would seem like there was a community of friends, even if we were sort of creating it for him.
JUDY WOODRUFF: It does.
SALLY QUINN: We were told Quinn was completely retarded when he was 8, that he was going to be institutionalized.
SALLY QUINN: He would never have a job, never have a relationship, never have friends. And I was on my knees; for three days, I cried. And then I got really angry. And I said, you know, in my gut, my mother's gut, I know this isn't true. And so we just kept on believing in Quinn and loving him.
Web site helps others
JUDY WOODRUFF: I think people watching, Quinn, would be really interested to know what you're doing now. Your mom -- you've mentioned the Web site. People would like to know, what are you doing? And what do you want to do?
QUINN BRADLEE: Well, the Web site, friendsofquinn.com, which is also part of HealthCentral, they're the ones who really -- if it weren't for them, there would probably be no Web site.
But this Web site is to help people with all sorts of learning disabilities. It's a place where they can feel safe and talk to our experts. And Dr. Robert Shprintzen is on there, as well, for people who have VCFS, and just to feel safe and welcome. And I hope to change people's lives and make them feel like they're not alone.
JUDY WOODRUFF: What message would you, Sally, and you, Ben, have for not just parents of children with disabilities, learning disabilities, but for anybody out there who doesn't really understand what it's like? What would you say to them?
SALLY QUINN: Well, I think that the most important thing is to love your child, just love them and love them and love them, and make them believe in themselves.
There's a thing that the shrinks call "mirroring," when somebody looks in your eyes and they see themselves through your eyes. And I wanted always, when Quinn looked in my eyes, that he saw nothing but love and appreciation and belief in him. And we always believed that he was a magical person and that he would do wonderful things. And you've got to be an advocate for your child.
BEN BRADLEE: And you've got to be friends, too. And that's what I've enjoyed the most out of it, in addition to the love. You give that to children and friends, but...
JUDY WOODRUFF: Well, that comes through loud and clear. Thank you very much for coming in and talking to us about the book. Ben Bradlee, Sally Quinn, and Quinn Bradlee, the namesake of his parents, thank you very much. And thank you for sharing a different life with us.
QUINN BRADLEE: Thank you very much.