Kelly Fradin, ADVANCED PARENTING: Advice for Helping Kids Through Diagnoses, Differences, and Mental Health Challenges
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[1:03]Kelly Freiden is the author of Advanced Parenting, Advice for Helping Kids Through Diagnoses,
[1:07]Differences in Mental Health Challenges.
[1:10]Dr. Kelly Freiden is a pediatrician mother of two and child-based advocate in New York City.
[1:16]Child advocate based in New York City.
[1:18]As the director of Pediatrics at Atria Institute, Dr. Freiden was inspired to become
[1:22]a doctor because of her experience surviving childhood cancer.
[1:26]A graduate of Harvard College and Columbia College of Physicians and Surgeons, she has dedicated
[1:30]her career to caring for children with complex medical conditions in many situations, including
[1:35]academic clinics, private practice, inpatient units, and schools.
[1:39]Welcome, Kelly.
[1:40]Thank you so much for coming on Bob's Don't Have Time to Read Bex to discuss Advanced
[1:44]Parenting, Advice for Helping Kids Through Diagnoses, Differences, and Mental Health Challenges.
[1:49]Thank you, Zippy.
[1:50]Thanks so much for having me.
[1:52]This book is so unique and amazing because it's also, it's really helping parents help
[1:58]kids through all these things, too.
[2:00]I feel like this whole thing is sort of a love letter to your mom for all of these, and
[2:04]she did to help you get through when you were a kid, and you had cancer and all of that.
[2:09]I feel like this is just one big gift and I hope that she loves it.
[2:13]Oh, she did like it.
[2:14]It's so funny.
[2:15]I think that it was one of the most informative things about my journey to becoming a pediatrician
[2:22]ian is really understanding that the health challenges of a child really affect the
[2:28]mother and the father, too, but in such a deep and unique way, it has a lasting impact
[2:35]on your experience of motherhood when your children face challenges.
[2:38]Little ones, big ones, any kind of challenge.
[2:41]Parents feel it so deeply because they love their children so much.
[2:45]Can you tell listeners a little bit about what happened when you were four and diagnosed
[2:49]including the traumatic escape through the hospital, that the snatching a crazy story,
[2:56]because I grew up in North Carolina, relatively rural area, and I had fallen on a bed
[3:01]on Mother's Day, of course, and I had a cute abdominal pain, and they thought, oh, she
[3:06]has penicitis, and they took me, and they took out my appendix, and they found a lot
[3:10]of internal bleeding, and at this local hospital, the surgeons didn't have imaging capabilities,
[3:17]and they weren't really pediatricians, they were just general surgeons, and they were
[3:20]like, well, you've been abusing your daughter, that's why she has internal bleeding,
[3:24]and my mom was like, obviously, I haven't been abusing my daughter, something's wrong
[3:28]here.
[3:29]This is not where she needs to be getting care, and they actually snuck me out of the
[3:33]stairwell and drove a few hours to go to Duke Children's Hospital.
[3:38]And you know, the only reason my mom knew to do that and had the confidence to do that
[3:44]was because she had had a lived experience of her own with a sick brother growing up,
[3:48]and knowing that it can make a big difference at the right facility with the right doctors
[3:53]and the right training, but then I was diagnosed with cancer, and I got, you know, world
[3:57]class care through the physician's hair, but it's just one small example of, like, a parent
[4:02]being an advocate and an effective one in changing the trajectory of care.
[4:06]Oh my gosh, yeah, I could believe in later in the book, you started talking about your
[4:09]uncle.
[4:11]What are the odds that two people would get childhood cancer?
[4:14]Is it genetic?
[4:15]Do you think there's some link?
[4:17]Absolutely.
[4:18]We have been scrutinized by lots of geneticists, and I think it's one of those situations
[4:22]where they don't really know, but probably one day they'll figure it out.
[4:26]Interesting.
[4:27]Does that make you terrified for your own kids?
[4:28]You know, terrible things can happen to anybody, you know, we cross the street every
[4:33]day on the way to school, so you try not to let fear consume you too much.
[4:39]What you do, talk about how you have your own advocacy with your child's hearing problems
[4:44]and how you totally picked up on that, and we're able to solve that whole problem, talk
[4:48]a little bit about that.
[4:49]Well, you know, I think it's, it's just an example, like, as pediatrician, I had all the
[4:54]information and all the resources, and I saw my daughter not babbling and not really making
[5:00]any sounds, and she was like a happy, easy baby, but she really wasn't talking at all,
[5:05]like, making any noises at all at nine months.
[5:08]And I talked to the pediatrician about it because I'm not my kid's pediatrician, and
[5:12]the pediatrician was like, oh, just wait and see you watchful eating, and I'm sure it'll
[5:15]pick up.
[5:16]But some part of me knew that that wasn't the right answer, but I still waited, you know,
[5:22]two almost three months before I finally took her in to get a hearing test.
[5:26]And it just goes to show you that sometimes it's easy to ignore your parental intuition,
[5:31]but it is, it is a really valuable resource if, if you feel like something's not right
[5:35]to listen to your mom gut and either fall, you know, continue to ask questions or follow
[5:40]up or advocate for going to do that extra test because when I do take my daughter, she couldn't
[5:45]hear anything.
[5:46]And when we fixed it, she'd started talking and really hasn't stopped since making
[5:51]it for the last time.
[5:53]Yeah.
[5:54]I feel like this happens all the time where, you know, I take a kid to the doctor and
[5:58]like they obviously know so much more than me and speak with such authority that it's
[6:02]hard for me to listen to myself because I don't know as much.
[6:06]So it could just be panic and anxiety and ill-founded.
[6:09]But sometimes I'm like, are you sure like, let me just ask one more person like, how
[6:14]about another doctor?
[6:15]Like, how do you know for sure this is what's causing this?
[6:18]And it's hard when you want maybe a better answer or I don't know, I'll just say I feel
[6:24]like I try to listen to my parent intuition, but also not listen too much because I feel like
[6:31]I often know over his death and I'm like, I need a third opinion of this rash.
[6:35]It is an important balance and I feel like maybe I'm biased.
[6:39]But as a doctor, I think that it's so important to have like mutual respect and trust
[6:47]between the doctor and the parents because that's really what helps because I respect
[6:52]my patients' parents and I listen to them, like really listen to them.
[6:58]So that when I say sometimes that it's really nothing, we'll just wait and let it blow
[7:03]over.
[7:04]They know that they've been heard and that helps to move forward and I also have to also
[7:10]admit sometimes when maybe I don't have all the answers and when we can get a second opinion
[7:14]or do some extra testing and that's because I respect their intuition too and I'm always
[7:20]willing to be curious.
[7:22]I didn't mean to say anything.
[7:23]I adore my kids' doctors so much, like love, love, love.
[7:27]So this is my own neuroseals at play is kind of what I'm trying to say, it's how to
[7:32]balance that.
[7:33]But a lot of the advice in your book also is how to deal with things are not just
[7:38]a normal rash or whatever that that blow over.
[7:41]But what if it really is actually a major medical problem and how do you parent through
[7:46]that and how do you help your kids through that?
[7:48]How do you deal with the whole family system and all the siblings and that it's not
[7:52]just one person who's affected?
[7:54]And I don't know.
[7:55]I haven't researched this category of book but I haven't heard of any other books that
[7:59]really address this specific thing and how to parent through times like this.
[8:04]Is there anything or is this why you did this book?
[8:06]This is why I did this book because I have given parents the bad news sometimes that they
[8:13]have a diagnosis that they have to deal with, that their child needs to take medicine every
[8:18]day for the rest of their life that they need to see specialists.
[8:21]And as a parent, I have a lot of empathy for that being really hard on families.
[8:27]And it wasn't actually until I had my own kids and I checked out all the parenting books
[8:30]as a consumer of parenting content that I said like where is the help for all this?
[8:37]And I hated that parents were so alone during some of these challenging times.
[8:42]And I think what's important to understand too is it doesn't have to be a big scary diagnosis
[8:49]to be hard.
[8:50]Certainly big scary diagnosis people need the most help.
[8:54]They might also be too busy to even read the book.
[8:57]But even something like eczema or food allergies, it requires you to like have a plan
[9:03]and change what you're doing day to day and communicate with your team and cope with the
[9:07]stress and monitor something over time.
[9:10]And it affects things like sleep and relationships and so that's why I think it's important
[9:14]to have a forum to think through the best way to parent in these situations.
[9:20]And not just physical maladies, but also mental health issues as well, which can be also
[9:26]sort of terrifying overwhelming for parents to navigate their way through.
[9:29]So what are some of the tips?
[9:31]Like let's say there's a parent out there, they don't have time to read right now.
[9:34]They are going to go buy your book though after they hear this, but in the meantime, they're
[9:37]rushing from this specialist to that, they're getting this extra opinion, or they're just
[9:42]like sort of sitting with the news of something that they know will change their lives
[9:46]in some way ongoing and dealing with sort of the mourning of what they thought life with
[9:51]this particular child would be in instead.
[9:53]This is the reality of life with that child.
[9:55]What do you say to that parent?
[9:56]I think a lot of parents in that situation when they're so overwhelmed.
[10:00]They might not think that they can do it.
[10:04]They might think they don't have the vocabulary,
[10:06]the knowledge base or the skills to do all the stuff
[10:09]that their child needs.
[10:10]But one important message for that group of people
[10:13]is for them to know that they are the perfect parent
[10:16]for their child.
[10:17]They can be their child's advocate and quarterback
[10:21]for what they need, but that they don't have to do it alone.
[10:25]And it doesn't make you a less than parent
[10:29]to admit that you can't do it all on your own.
[10:32]Some of the best parents I've seen are the ones
[10:35]who had ways of building their support team
[10:39]and delegating some of the worry work and thought work
[10:43]and kind of activating their networks of support.
[10:46]Because the truth of the matter is when more people
[10:49]are thinking about your child
[10:50]and helping with the day to day of your family life,
[10:53]that's just like more resources for your child,
[10:55]more people who love them and care for them.
[10:58]And so it's not worse because it's not you doing everything.
[11:02]So those grandparents, the neighbors, the kids in the class
[11:05]with them often they're willing to help.
[11:08]They just don't know how.
[11:09]So sometimes thinking through that
[11:11]is the best thing to do in those overwhelmed moments.
[11:15]And what about for mental health?
[11:17]What if there's nothing, what are the things
[11:19]that even can't be done that other people can do?
[11:22]I mean, what would that support group look like
[11:25]taking kids to appointments?
[11:26]Like how granular is the book going into?
[11:30]Like how to mobilize networks?
[11:31]Oh yeah.
[11:32]So I do talk about some different ways to do it.
[11:34]And I also talk about some of the reasons people don't, right?
[11:38]Because sometimes it holds you back
[11:41]when you're a little embarrassed about your child's condition
[11:44]or there's so much uncertainty.
[11:46]You don't feel secure in your knowledge
[11:48]that you're on the right track or you have the best plan
[11:51]or maybe you just want to control everything.
[11:53]These common things that keep us from reaching out
[11:56]for help or leaning on others for help,
[11:58]it's important to identify those barriers
[12:00]so that you can work through them.
[12:03]And I think with mental health in particular,
[12:06]it feels private and unfortunately accessing
[12:10]like the best therapist or the best psychiatrist
[12:13]or groups to support a family is very difficult
[12:17]and hard to do on your own without asking for help.
[12:21]But the truth of the matter is so many kids,
[12:23]it's made the news a lot, right?
[12:25]Like maybe one in five children need mental health services
[12:29]and only like one out of five of those are getting them.
[12:32]So I think what you find as a parent
[12:34]when you are dealing with a child with anxiety
[12:36]or depression or other mental health related issues,
[12:40]when you do start talking about it,
[12:42]you're going to find other people in your community
[12:44]who are dealing with the same thing
[12:46]or maybe it's not their kid, maybe it's themselves,
[12:48]maybe it's their brother or their parent,
[12:51]mental health, conditions have touched almost everybody.
[12:53]And the more we talk about it,
[12:55]the less isolating it is to be on the end of trying
[12:59]to make a plan.
[13:00]I don't know if you talked about this before
[13:01]that I'm on the board of the Child Mind Institute,
[13:03]but I feel like this would be such a great book
[13:06]to sell there or for them to recommend a parents
[13:08]because those are all the parents they can really benefit.
[13:13]I mean, obviously so many institutions
[13:16]and all the childhood,
[13:18]there's, I don't why am I even talking about the marketing
[13:20]of this book, not like you need help,
[13:21]but I just feel like the parents might not be at the bookstore,
[13:25]but they'll certainly be with their doctors
[13:27]and if the doctors now, then they'll be able
[13:30]to get it in their hands more quickly, that's all.
[13:33]Yeah, absolutely, I think the Child Mind Institute
[13:36]has done such amazing work here in the city
[13:38]and they also do like a lot.
[13:40]Their website is so full of like resources.
[13:42]It's a great place, one of the things I talk about
[13:45]in the book is like, where do you get good information?
[13:49]Because that's like the first step for a lot of this
[13:51]is building your knowledge bases of parents
[13:53]so you can seek out the best resources for your child
[13:56]and often if you just Google stuff,
[13:58]you go down like the wrong direction,
[14:01]but having a website like theirs
[14:03]with so many amazing resources, it's really impactful.
[14:06]And so they reach a lot of families.
[14:08]I know even outside of their primary scope of services.
[14:12]In terms of talking to your kids about their diagnosis
[14:15]and you shared how your parents handle it with you,
[14:18]which was one of those pivotal moments
[14:20]and how parents should talk to their kids
[14:23]about obviously it's different based on the child's age
[14:26]and what it is that they have or don't have
[14:29]or what they suspect they have.
[14:31]Like I feel like that is a whole nother, sticky area
[14:34]where parents don't know at what point do you tell your kids?
[14:37]Like do you worry them, but they're getting all these tests
[14:39]and so they know something's up.
[14:41]But like the question of how much to keep to yourself
[14:44]versus how much to share and kids of course
[14:47]don't always keep things to themselves and is that okay?
[14:49]And like what do you do about that whole Kenahora essentially?
[14:53]It is a huge thing for a parent to consider
[14:56]because the truth of the matter is children can pick up
[15:00]when things aren't right.
[15:01]You know, often children know a lot more
[15:04]as they notice little things about your behavior.
[15:07]You know, your stress level, your body language,
[15:10]your reaction and they overhear things, you know,
[15:13]when they're at appointments,
[15:14]when they hear people making appointments on their behalf.
[15:16]And so often I'm in the position of encouraging parents
[15:19]to give the child a little information
[15:22]because it can be more scary for a child
[15:26]to have the incomplete information
[15:28]than to actually have some facts,
[15:29]some developmentally appropriate specific facts.
[15:33]But like you said, there is always the other side
[15:36]to consider because once you say something,
[15:37]you can't really unsay it
[15:39]and you do want to make sure that your child feels safe
[15:42]and that they aren't exposed to things
[15:44]that they aren't prepared to handle.
[15:46]So while I can't give a specific advice in the book
[15:48]about whether or not you should say stuff to your children,
[15:51]I can give you like a framework for how to think about
[15:54]what's appropriate and the timing
[15:56]of delivering those kinds of information.
[15:58]What was it like getting all of the information together
[16:02]even to craft this book?
[16:03]Like how did you get, is it mostly your experience?
[16:07]Did you do a lot of research into the material?
[16:10]Like how did you, and I know it was so great
[16:13]how you woven your own experience
[16:15]because then immediately as a reader,
[16:16]we relate to you like your mom, your a doctor,
[16:19]like you've been through it, like tell us, you know,
[16:21]help us to, you know, it's like you're not too chatty chatty
[16:25]but just like personal enough to make us feel very seen
[16:28]and heard and all that stuff.
[16:30]So in how you researched and put it together,
[16:32]tell me what that process looked like for you?
[16:35]Yes.
[16:35]So, you know, I really identified the need
[16:37]for the book through my own experiences pediatrician.
[16:41]And when I was doing complex care in particular,
[16:43]I was seeing some of the kids who were the sickest
[16:45]who had transplants or cancer or prematurity
[16:48]or they needed breathing tubes
[16:49]and some of those experiences, you know,
[16:52]we really led to the formative ideas
[16:54]about the categories of things the book needed to cover.
[16:58]And when I first imagined it,
[16:59]I hoped that I would be able to draw in more research,
[17:03]more data, because there's an interest
[17:05]in the scientific community in this population
[17:08]of children who have chronic conditions.
[17:10]You know, there's some studies about burnout
[17:12]and parents of children with cancer
[17:15]or about the quality of life in children with eczema.
[17:18]And I just drawn some of that research,
[17:21]but the chance of matter is it isn't as action-oriented
[17:24]as I hoped, like it doesn't offer parents a lot of,
[17:28]so what do I do about that?
[17:30]So the medical literature wasn't as helpful as I hoped.
[17:32]And there's not as many like scientific studies in it
[17:35]as I hoped when I was originally writing it,
[17:37]but what there is is a lot of ideas
[17:39]based on my experience and the experience
[17:41]and my friends and patients about what works best, amazing.
[17:45]What do you hope will come out of this book?
[17:48]Tell me your biggest dreams.
[17:50]The biggest goal of the book,
[17:51]like yes, I wanna help like these individual families
[17:54]to feel more confident
[17:56]and to help the parents who are feeling most overwhelmed.
[17:58]But I also hope to kind of shift awareness
[18:02]of the public's perception about what is childhood
[18:06]and parenthood in the United States, right?
[18:08]Because we always think the conversation now is like,
[18:11]oh, having a new baby is hard
[18:13]and Prandaleve is really important and it is.
[18:15]And that's true.
[18:16]But what we forgot about sometimes
[18:19]are that so many children have medical conditions come up
[18:23]or mental health needs or disabilities.
[18:26]And we haven't built our systems to make it easy
[18:30]for these families.
[18:31]And if we start to see parenthood
[18:34]as a more of a mixed experience
[18:37]that it's not like your alone
[18:41]if your child has a disability,
[18:42]that it's actually pretty common.
[18:44]And that's also part of what being a parent looks like.
[18:47]I think we can make our systems better,
[18:50]our school systems more accessible,
[18:52]our community spaces,
[18:53]like airports more accessible.
[18:55]If you like start to remember these families
[18:57]and pay more attention to them.
[18:59]That's amazing.
[19:00]Kelly, thank you so much.
[19:02]I feel like this is a big sigh,
[19:05]like a big deep breath of comfort
[19:07]to know this book is around for everyone who needs it.
[19:10]And also for parents whose friends are going through,
[19:13]people whose friends or loved ones
[19:15]are going through something similar
[19:17]to have something to give.
[19:19]It's like, I can't do anything,
[19:21]but here, take this, this might help.
[19:23]So that's actually helping the friend
[19:24]and it's helping the parent.
[19:25]And it's just so wonderful.
[19:27]It's out there now.
[19:27]So thank you for giving this tool
[19:29]for everyone who really, really needs it.
[19:32]Thank you so much.
[19:33]And thanks for talking to me about it
[19:34]and reading it and to be really appreciated.
[19:36]Oh my gosh, it's my pleasure.
[19:38]It's a wonderful book.
[19:39]And I know it's gonna help so many people.
[19:41]Thank you.
[19:42]Thank you.
[19:44]Thanks for listening to this episode
[19:45]of Moms Don't Have Time to Read Books.
[19:47]Don't forget to follow me on Instagram,
[19:49]at Zebioans and at Moms Don't Have Time to Read Books.
[19:52]Also sign up for my newsletter at zebioans.com
[19:55]and sign up for my virtual book club
[19:57]and meet lots of authors on Zoom every other week.
[19:59]Thanks so much.
[20:00]to Steve and Ryan back texture sound for the sound editing,
[20:03]and thank you to Morning Moon Productions
[20:05]for providing this fantastic intro and outro music.