Zibby interviews author and pediatrician Dr. Kelly Fradin about her important, empathetic, and comprehensive new guidebook Advanced Parenting: Advice for Helping Kids Through Diagnoses, Differences, and Mental Health Challenges. Dr. Kelly Fradin explains how her mother advocated for her when she had childhood cancer and how she too has had to trust her own parental intuition and advocate for her daughter. She also shares her tips for dealing with difficult diagnoses, building and leaning on support systems, discussing mental health issues without feeling shame, and knowing where to find factual and trustworthy information.

Transcript:

Zibby Owens: Welcome, Kelly. Thank you so much for coming on “Moms Don’t Have Time to Read Books” to discuss Advanced Parenting: Advice for Helping Kids Through Diagnoses, Differences, and Mental Health Challenges.

Kelly Fradin: Thank you, Zibby. Thanks so much for having me.

Zibby: This book is so unique and amazing because it’s really helping parents help kids through all these things too. I feel like this whole thing is sort of a love letter to your mom for all of the things that she did to help you get through when you were a kid and you had cancer and all of that. I feel like this is just one big gift. I hope that she loves it.

Kelly: She did like it. It’s so funny. I think that it was one of the most informative things about my journey to becoming a pediatrician, is really understanding that the health challenges of a child really affect the mother, and the father too, but in such a deep and unique way, it has a lasting impact on your experience of motherhood when your children face challenges, little ones, big ones, any kind of challenge. Parents feel it so deeply because they love their children so much.

Zibby: Can you tell listeners a little bit about what happened when you were four and diagnosed, including the dramatic escape through the hospital with the snatching? I don’t even know how to explain.

Kelly: It’s a crazy story. I grew up in North Carolina, a relatively rural area. I had fallen out of bed on Mother’s Day, of course. I had acute abdominal pain. They thought, oh, she has appendicitis. They took me. They took out my appendix. They found a lot of internal bleeding. At this local hospital, the surgeons didn’t have imaging capabilities. They weren’t really pediatricians. They were just general surgeons. They were like, “You’ve been abusing your daughter. That’s why she has internal bleeding.” My mom was like, “Obviously, I haven’t been abusing my daughter. Something’s wrong here. This is not where she needs to be getting care.” They actually snuck me out of the stairwell and drove a few hours to go to Duke Children’s Hospital. The only reason my mom knew to do that and had the confidence to do that was because she had had a lived experience of her own with a sick brother growing up and knowing that it can make a big difference being at the right facility with the right doctors and the right training. Then I was diagnosed with cancer. I got world-class care through the physicians there. It’s just one small example of a parent being an advocate, and an effective one, and changing the trajectory of care.

Zibby: Oh, my gosh. I couldn’t believe when, later in the book, you started talking about your uncle. I was like, oh, no. What are the odds that two people would get childhood cancer? Is it genetic? Do you think there’s some link?

Kelly: Absolutely. We have been scrutinized by lots of geneticists. I think it’s one of those situations where they don’t really know. Probably, one day, they’ll figure it out.

Zibby: Interesting. Does that make you terrified for your own kids?

Kelly: No. Terrible things can happen to anybody. We cross the street every day on the way to school. You try not to let fear consume you too much.

Zibby: You do talk about how you have your own advocacy with your child’s hearing problems and how you totally picked up on that and were able to solve that whole problem. Talk a little bit about that.

Kelly: As a pediatrician, I had all the information and all the resources. I saw my daughter not babbling and not really making any sounds. She was a happy, easy baby, but she really wasn’t talking at all, making any noises at all at nine months. I talked to the pediatrician about it. I’m not my kids’ pediatrician. The pediatrician was like, “Just wait and see. Watch while waiting. I’m sure it’ll pick up.” Some part of me knew that that wasn’t the right answer. I still waited two, almost three months before I finally took her in to get a hearing test. It just goes to show you that sometimes it’s easy to ignore your parental intuition. It is a really valuable resource if you feel like something’s not right, to listen to your mom gut and continue to ask questions or follow up or advocate for going to do that extra test. When I did take my daughter, she couldn’t hear anything. When we fixed it, she started talking and really hasn’t stopped since.

Zibby: Making up for lost time. I feel like this happens all the time, where I take a kid to the doctor, and they’re so — they obviously know so much more than me and speak with such authority that it’s hard for me to listen to myself because I don’t know as much. It could just be panic and anxiety and ill-founded. Sometimes I’m like, are you sure? Let me just ask one more person. How about another doctor? How do you know for sure this is what’s causing this? It’s hard when you want, maybe, a better answer. All to say, I feel like I try to listen to my parent intuition but also not listen to it too much because I feel like I often overstep. I’m like, I need a third opinion on this rash.

Kelly: It is an important balance. Maybe I’m biased, but as a doctor, I think that it’s so important to have mutual respect and trust between the doctor and the parents because that’s really what helps. I respect my patients’ parents. I listen to them, really listen to them. When I say sometimes that, “It’s really nothing. We’ll just wait and let it blow over,” they know that they’ve been heard. That helps to move forward. I have to also admit sometimes when I maybe don’t have all the answers and when we can get a second opinion or do some extra testing. That’s because I respect their intuition too. I’m always willing to be curious.

Zibby: I didn’t mean to say anything negative. I adore my kids’ doctor so much. Love, love, love. This is my own neuroses at play, is what I’m trying to say, is how to balance that. A lot of the advice in your book also is how to deal when things are not just a normal rash or whatever that blow over. What if it really is actually a major medical problem? How do you parent through that? How do you help your kids through that? How do you deal with the whole family system and all the siblings? It’s not just one person who’s affected. I haven’t researched this category of book, but I haven’t heard of any other books that really address this specific thing and how to parent through times like this. Is there anything, or is this why you did this book?

Kelly: This is why I did this book. I have given parents the bad news sometimes that they have a diagnosis that they have to deal with, that their child needs to take medicine every day for the rest of their life, that they need to see a specialist. As a parent, I have a lot of empathy for that being really hard on families. It wasn’t actually until I had my own kids and I checked out all the parenting books as a consumer of parenting content that I said, where is the help for all this? I hated that parents were so alone during some of these challenging times. What’s important to understand, too, is it doesn’t have to be a big, scary diagnosis to be hard. Certainly, big, scary diagnosis, people need the most help. They might also be too busy to even read the book. Even something like eczema or food allergies, it requires you to have a plan and change what you’re doing day to day and communicate with your team and cope with the stress and monitor something over time. It affects things like sleep and relationships. That’s why I think it’s important to have a forum to think through the best way to parent in these situations.

Zibby: And not just physical maladies, but also mental health issues as well, which can be also terrifying, overwhelming for parents to navigate their way through. What are some of the tips? Let’s say there’s a parent out there. They don’t even have time to read right now. They are going to go buy your book, though, after they hear this. In the meantime, they’re rushing from this specialist to that. They’re getting this extra opinion. They’re just sitting with the news of something that they know will change their lives in some way ongoing and dealing with the mourning of what they thought life with this particular child would be. Instead, this is the reality of life with that child. What do you say to that parent?

Kelly: I think a lot of parents in that situation, when they’re so overwhelmed, they might not think that they can do it. They might think they don’t have the vocabulary or the knowledge base or the skills to do all the stuff that their child needs. One important message for that group of people is for them to know that they are the perfect parent for their child, they can be their child’s advocate and quarterback for what they need, but that they don’t have to do it alone. It doesn’t make you a less-than parent to admit that you can’t do it all on your own. Some of the best parents I’ve seen are the ones who had ways of building their support team and delegating some of the worry work and thought work and activating their networks of support. The truth of the matter is when more people are thinking about your child and helping with the day-to-day of your family life, that’s just more resources for your child, more people who love them and care for them. It’s not worse because it’s not you doing everything. Those grandparents, the neighbors, the kids in the class with them, often, they’re willing to help. They just don’t know how. Sometimes thinking through that is the best thing to do in those overwhelmed moments.

Zibby: What about for mental health? What are the things that even can be done that other people can do? What would that support group look like? Taking kids to appointments? How granular is the book going into how to mobilize networks?

Kelly: I do talk about some different ways to do it. I also talk about some of the reasons people don’t. Sometimes it holds you back when you’re a little embarrassed about your child’s condition. There’s so much uncertainty. You don’t feel secure in your knowledge that you’re on the right track or you have the best plan. Maybe you just want to control everything. These common things that keep us from reaching out for help or leaning on others for help, it’s important to identify those barriers so that you can work through them. With mental health in particular, often, it feels private. Unfortunately, accessing the best therapist or the best psychiatrist or groups to support a family is very difficult and hard to do on your own without asking for help. The truth of the matter is so many kids — it’s made the news a lot. Maybe one in five children need mental health services. Only one out of five of those are getting them. I think what you find as a parent when you are dealing with a child with anxiety or depression or other mental health-related issues, when you do start talking about it, you’re going to find other people in your community who are dealing with the same thing. Maybe it’s not their kid. Maybe it’s themselves. Maybe it’s their brother or their parent. Mental health conditions have touched almost everybody. The more we talk about it, the less isolating it is to be on the end of trying to make a plan.

Zibby: I don’t know if we talked about this before, that I’m on the board of the Child Mind Institute. I feel like this would be such a great book to sell there or for them to recommend to parents because those are all the parents — they could really benefit. Obviously, so many institutions and all the childhood — why am I even talking about the marketing of this book? Not like you need help. I just feel like the parents might not be at the bookstore, but they’ll certainly be with their doctors. If the doctors know, then they’ll be able to get it in their hands more quickly. That’s all.

Kelly: Yes, absolutely. I think the Child Mind Institute has done such amazing work here in the city. Their website is so full of resources. It’s a great place. One of the things I talk about in the book is, where do you get good information? That’s the first step for a lot of this, is building your knowledge base as a parent so you can seek out the best resources for your child. Often, if you just google stuff, you go down the wrong direction. Having a website like theirs with so many amazing resources, it’s really impactful. They reach a lot of families, I know, even outside of their primary scope of services.

Zibby: In terms of talking to your kids about their diagnosis, you shared how your parents handled it with you, which was one of those pivotal moments. How parents should talk to their kids about — obviously, it’s different based on the child’s age and what it is that they have or don’t have or what they suspect they have. I feel like that is a whole nother sticky area where parents don’t know, at what point do you tell your kids? Do you worry them? They’re getting all these tests, and so they know something’s up. The question of how much to keep to yourself versus how much to share — then kids, of course, don’t always keep things to themselves. Is that okay? What do you do about that whole kinehora, essentially?

Kelly: It is a huge thing for a parent to consider because the truth of the matter is children can pick up when things aren’t right. Often, children know a lot more. They notice little things about your behavior, your stress level, your body language, and your reaction. They overhear things when they’re at appointments or when they hear people making appointments on their behalf. Often, I’m in the position of encouraging parents to give the child a little information because it can be more scary for a child to have incomplete information than to actually have some facts, some developmentally appropriate, specific facts. Like you said, there is always the other side to consider because once you say something, you can’t really unsay it. You do want to make sure that your child feels safe and that they aren’t exposed to things that they aren’t prepared to handle. While I can’t give specific advice in the book about whether or not you should say stuff to your children, I can give you a framework for how to think about what’s appropriate and the timing of delivering those kinds of information.

Zibby: Interesting. What was it like getting all of the information together even to craft this book? Is it mostly your experience? Did you do a lot of research into the material? I know it was so great how you wove in your own experience. Then immediately as the reader, we relate to you. You’re a mom. You’re a doctor. You’ve been through it. Tell us. Help us through. You’re not too chatty, chatty, but just personal enough to make us feel very seen and heard and all that stuff. In how you researched and put it together, tell me what that process looked like for you.

Kelly: I really identified the need for the book through my own experience as a pediatrician. When I was doing complex care in particular, I was seeing some of the kids who were the sickest, who had transplants or cancer or prematurity. They needed breathing tubes. Some of those experiences really led to the formative ideas about the categories of things the book needed to cover. When I first imagined it, I hoped that I would be able to draw in more research, more data. There’s an interest in the scientific community in this population of children who have chronic conditions. There are some studies about burnout in parents of children with cancer or about the quality of life in children with eczema. I do draw on some of that research. The truth of the matter is it isn’t as action oriented as I hoped. It doesn’t offer parents a lot of, so what do I do about that? The medical literature wasn’t as helpful as I hoped. There’s not as many scientific studies in it as I hoped when I was originally writing it. What there is is a lot of ideas based on my experience and the experience of my friends and patients about what works best.

Zibby: Got it. Amazing. What do you hope will come out of this book? Tell me your biggest dreams.

Kelly: The biggest goal of the book, yes, I want to help these individual families to feel more confident and to help the parents who are feeling most overwhelmed, but I also hope to shift awareness of the public’s perception about what is childhood, then parenthood in the United States. The conversation now is, having a new baby is hard, and parental leave is really important. It is. That’s true. What we forget about sometimes are that so many children have medical conditions come up, or mental health needs or disabilities. We haven’t built our systems to make it easy for these families. If we start to see parenthood as more of a mixed experience, that it’s not like you’re alone if your child has a disability, that it’s actually pretty common and that’s also part of what being a parent looks like, I think we can make our systems better, our school systems more accessible, our community spaces, like airports, more accessible if you start to remember these families and pay more attention to them.

Zibby: That’s amazing, oh, my gosh. Kelly, thank you so much. I feel like this is a big sigh, a big deep breath of comfort to know this book is around for everyone who needs it and also for people whose friends or loved ones are going through something similar. To have something to give as, “I can’t do anything, but here. Take this. This might help,” that’s actually helping the friend, and it’s helping the parent. It’s just so wonderful it’s out there now. Thank you for giving this tool for everyone who really, really needs it.

Kelly: Thank you so much. Thanks for talking to me about it and reading it. Zibby, I really appreciate it.

Zibby: It’s my pleasure. It’s a great, wonderful book. I know it’s going to help so many people.

Kelly: Thank you.

Zibby: Thank you.

ADVANCED PARENTING: Advice for Helping Kids Through Diagnoses, Differences, and Mental Health Challenges by Kelly Fradin

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