ST. JOHN: This is KPBS Midday Edition. I'm Alison St. John in for Maureen Cavanaugh. Parents want to protect their kid, not just from real danger, but also from sadness and insecurity. So the first reaction of many people if they get seriously ill is to keep their illness from the kids as much as possible. But that's often not the best idea. A book that has helped thousands of families maneuver through the illness and even the death of a parent has now been revised and updated. It's the result of an interesting collaboration between a childhood specialist and a reporter. I'd like to welcome Kathleen McCue, who's on the phone. Thanks for joining us. MCCUE: Of course, Alison. My pleasure. ST. JOHN: Kathleen is with the Cleveland clinic foundation, and the author of the book "How to Help Children Through a Parent's Serious Illness." In studio, we have Ron Bonn who new teaches journalism at the university of San Diego. Thanks for being with us. BONN: Thank you for having us. ST. JOHN: Ron, you were doing a story on Kathleen McCue's work with kids at the Cleveland clinic, and it developed into this book. What did you see there that impressed you so much? BONN: Well, I was working for an NBC Sunday today, and I was the health and science producer. I got a flier from Cleveland clinic about this program that they had to support the children of gravely ill or dying parents, and it suddenly occurred to me, I had seen a lot of good programs to support the parents of very sick children but never anything like this. So I was just blown away by what Kathleen was accomplishing with these children. I sat down and talked to children whose mother or father had died, and the kids wering --. They could talk about it. They were going into their future. They were emotionally sound. So I told Kathleen, we have to turn this thing into a manual for parents. And I worked on it for about a year. And finally, we sat down and we did it. And we produced this manual for parents. But that was 16 years ago. Of the Internet scarcely existed. The American family was two parents raising a bunch of children. The human genome had not yet been mapped. All of these things have changed so drastically, and we decided that we needed to bring this book into the 21st century. And now we have. ST. JOHN: So Kathleen, you know, this is such a difficult area, and the help is sorely needed. Let's start with saying why is it a bad idea, perhaps, to keep information about a parent's illness away from a child as much as possible? MCCUE: One of the most important lessons in childhood is to learn trust, and especially to learn trust in parents. It's a critical stage in every human's development. And so when children are being affected by something in the family, and their parents don't include them, they notice that something's different. They see parents on the phone, they know that mom or dad isn't around as much, and yet nobody has communicated with them about what's happening. And that lays the groundwork for distrust between child and parent. And that's -- that can be a very, very devastating impact on a child's ongoing development through life. So just on that basis, it's so important for help children honestly understand what's happening in the family, and also help them understand how they can successfully manage whatever the challenge or crisis is. ST. JOHN: What kind of things can happen if too much is kept secret from the kids? MCCUE: Well, children begin to suspect that things are happening in the family that their parents don't want to talk about. So communication between child and parent is really reduced. And children begin, especially at younger ages, to imagine what might be going on so that children's fantasies, and their magical thinking take over, and they begin to imagine that their parents are going to be divorced or that they have to move and leave their friends. Or some other kind of crisis. But because their parents aren't talking to them and the children don't talk to their parents and don't ask the questions that would clarify what's happening. And ultimately, if a parent is seriously ill is and isn't informed appropriately, they have no opportunity to learn how to manage that crisis, to get closure if necessary with that parent, and no ability to reach out for support to go on in a healthy way with their lives. ST. JOHN: So are there different kinds of information you should tell children based on their ages? MCCUE: Oh, absolutely. Lots of different approaches paced on different age. But what's most important for parents to hear who may be listening, it's not just about the factual information on the medical situation. At least 50% of the discussion should be about the reactions and emotions that go along with the information that the child is hearing. Children don't need, especially at a young age, a lot of technical information. It's okay to call something a boo-boo. It's okay to use very simple terminology. And to not talk to children about what may be far out in the future, for young children because they can't comprehend that. But it's very important to communicate to them about mom and dad being really busy, or having worried faces, or maybe mom crying sometimes, sitting on her bed. And what that's about and why that's happening and what the child can do. At an older age for kids that are preteens and teenagers, lots of factual information is important. Children really want to understand things. And our book does, it helps patients to understand that most children nowadays will go to the Internet for their information. And it's so inappropriate for children to do that alone because so much of the information is either inaccurate or not applicable to that family. ST. JOHN: Ron, you wrote this book in a very accessible way. And you wanted people to be able to get a lot from it without reading the whole book. How did you accomplish that? BONN: I think maybe Kathleen and I are the only two people in the word who will ever read the whole book. It's designed to help you get to what you're seeing with your children with your illness. And we even have a section right up front that tells you very briefly what's in each chapter. So whatever is worrying, you can go find the answers that need. Nobody's ever going to pick this book up for a casual read. But for the families in this situation, that need it that are in the worst situation of your lives. There's absolutely nothing else like it. ST. JOHN: Kathleen, I noticed there are pictures in this book, and that you use picture drawing in your practice to illustrate how kids are feeling. Can you give us an example of how a picture was helpful for a child to process their parent’s illness? MCCUE: Many children, especially younger children and school-aged children aren't always capable of putting their thoughts and feelings into words. But they can do if through their play, and through their art. And I find art, especially expressive, free art, a wonderful way for children to let us know what's on their minds. It's subtle sometimes. Children might draw a face that's a happy face, but then you notice that there are little tears. And you have to talk about what that tears many with that child. So often the children have secondary messages, and it doesn't take an art therapist to talk to their child about their drawing and what it means to them. Just had a child in my office the other day, you know the commercial about got milk? This child did a picture about got hope, and the same kind of background as the commercial. But with this smiling face, and this child really reflecting the hope that their parent was giving them at the point in time about the illness in the family. ST. JOHN: So it can reveal some hope as well as some of the deeper pain going on. MCCUE: Absolutely. Remember, there's always a balance. There's always the fear, and the anger and the confusion about what's going on, and special concerns that something might not go well. But on the other side, there's resiliency, and there's hope, and there's positive skills that get learned from going through these kinds of things, and I think parents need to remember that balance BONN: Allison, you want to remember, this is it a very hopeful book. The delft position of a child is optimism, is hope for the future. And this book is trying to reinforce that hope for the future. ST. JOHN: Well, I know some children take on responsibility for their parents' welfare, and sort of try to take care of them in hard times. They have can be really strong, can't they? Is there a way to actually enroll your children to getting through this difficult time? BONN: Yes, Kathleen has given us a series of what you can expect of your children and what you can ask of your children. ST. JOHN: And what you can't. BONN: Broken down by ages, and it continues the -- what you want of them gets better and better, and bigger and bigger, as they mature. ST. JOHN: Kathleen, do you have something to add to that in terms of how much you can actually work with your child and share your feelings with them and expect them to deal with it? MCCUE: Yeah, I think parents need to recall that they are the models for their children. And the more willing they are to share their feelings and emotions within reason, still maintaining that parental role, that's what sets the stage for children to be able to do that, to be able to communicate at the level that the parent hopes the child will be able to communicate. And children are extremely helpful in these kinds of things. What you don't want to for a child to take on a parent's role. You don't want a child to think that they have to be the little mom of the family or the dad of the family. But within their own realm of responsibility, there are many things children do. And it makes children feel good to be able to help at whatever level they can based on their age. ST. JOHN: What are the warning signs that a child may not be handling a parent's illness well? MCCUE: Well, there are a number of signs. The first is biggest is any significant change in a child's behavior and developmental skills. A child who's normally outgoing becomes really quiet. That's a concern. If a child who is very social withdraws from friendships, that's a concern. If a young child loses their skills at toilet training for example, or any kind of normal developmental process, that's a concern. So you see any major change in behavior, school changes in school-aged children are the most common signs. Children begin to not succeed where they have been succeeding in classroom or teachers say children aren't focusing, those are concerns. And things like changing in just eating and sleeping. Bad dreams often are one of the first signs that parents see that their child has worries that they're not expressing. ST. JOHN: And Ron, do you see professionals paying much attention to this book? Do you think there are some changing attitudes about how much you can really share with a child when a parent is ill or dying? BONN: I think in these 16 years, yes. And I hope our book has had some impact on that. The best help we have with the book is from medical professionals who are dealing with these families and who know that the families with this guidance are going to are better. Even in the very worst situations, and the tenth chapter is written to a dying parent. But the situation will still be better. If that parent knows that the children will be all right. ST. JOHN: So Kathleen, I think a parent would just want to know, is it possible for a child to get through the illness and each the death of a parent without being traumatized? MCCUE: Right. And that's the whole team of our book. Not only is it possible but it's what everyone should hope for and plan for when working with their children around a parent's illness. Children have an innate amount of resiliency to be able to deal with these things. And with just a little bit of help, a parent can really assist their child in moving forward and having a healthy and positive life, even with tragedies occurring at a young age. BONN: Our last chapter was written for us, not for us, but by her class by a 15 year-old girl whose father died. But the last chapter is called Emily's hero and it shows what you can accomplish, what is in the mind of this girl, coming out of this terrible, terrible situation. And it is just full of hope. ST. JOHN: It is indeed a very touching book. So the name of it is how to help children through a parent's serious illness, written by Kathleen McCue, and Ron Bonn. Thank you Kathleen very much for being with us. MCCUE: Thank you for having us. ST. JOHN: And Ron Bonn, thank you also. BONN: And thank you to help spread the word of the book.
Parents traditionally want to protect their kids, not just from real danger but also from sadness and insecurity. The first reaction of many parents, when they become seriously ill, is to keep their illness from their kids as much as possible. But that's often not the best idea.
A book that has helped thousands of families maneuver through the illness (and even the death) of a parent has now been revised and updated. How to Help Children Through a Parent's Serious Illness is the result of an interesting collaboration between a child life specialist and a reporter. Kathleen McCue is a child-life specialist at the Cleveland Clinic. Ronald Bonn is a veteran television journalist who now teaches journalism at the University of San Diego.
