How do we talk to kids about Health Challenges & Medical Diagnoses
Many of us have been there. We walk out of an appointment with our child’s doctor or teacher and we feel concerned—and a whole host of other feelings from fear to anger to sadness, confusion and of course, love. We all hope that our children are healthy and cruise through life fairly unscathed- so when reality hits and we hear that our child has common challenges like ADHD or learning disabilities or more severe challenges like feeding issues, asthma, food allergies, anxiety or depression, we can become alarmed. As we may flip into roles beyond the typical parenting caregiver to medical scheduler, diagnosis researcher, health advocate and more- we may find that money, time, access and a feeling of calm is in short supply. What can we do to cope with and talk with our kids about challenging medical diagnoses and how to proceed through life with one? For this, we turn to Dr. Kelly Fradin.
Many of us have been there. We walk out of an appointment with our child’s doctor or teacher and we feel concerned—and a whole host of other feelings from fear to anger to sadness, confusion, and of course, love. We all hope that our children are healthy and cruise through life fairly unscathed- so when reality hits and we hear that our child has common challenges like ADHD or learning disabilities or more severe challenges like feeding issues, asthma, food allergies, anxiety, or depression, we can become alarmed. As we may flip into roles beyond the typical parenting caregiver to medical scheduler, diagnosis researcher, health advocate, and more- we may find that money, time, access and a feeling of calm is in short supply. What can we do to cope with and talk with our kids about challenging medical diagnoses and how to proceed through life with one? For this, we turn to Dr. Kelly Fradin.
Dr. Kelly Fradin (@AdviceIGiveMyFriends) is a pediatrician, mother of two, and child advocate based in New York City. As the Director of Pediatrics at Atria Institute, Dr. Fradin was inspired to become a doctor because of her experience surviving childhood cancer. A graduate of Harvard College and Columbia College of Physicians and Surgeons, she has dedicated her career to caring for children with complex medical conditions in many situations including academic clinics, private practice, inpatient units, and schools. She shares realistic and empowering parenting advice and children’s health information on her Instagram account @AdviceIGiveMyFriends, which continues to grow.
Important Messages:
My diagnosis affected more than just me- it affected the family. Children don’t exist in, in isolation. They’re part of a family unit and, and we need to talk about that context when we help a child because a child with asthma in one family may require a totally different plan of care than a child with the same diagnosis in a different family.
Mistake: When you survive childhood cancer, you’re often left with kind of a laundry list of you’re at higher risk for skin cancer. So you see a dermatologist, you’re at higher risk for, for colon cancer, so you have to go to colonoscopy early and all this healthcare maintenance stuff. And when I was in my twenties and early thirties and in medical school and starting a family, it was very tempting to dismiss the preventive healthcare and not make it a priority and not make time for it. And I think that is, is generally speaking a mistake, but the fact that even me with my knowledge of how important it is still made those decisions, we may prioritize just the regular everyday.
Parent impact: Biggest success in my experience and the thing that I think had the biggest impact was that my mom was very empowered to, to advocate for me
Tempted to avoid the conversation. We often want to protect our children from hard things. But child knows there is something wrong even before you say something. Body language of parent. Whispers. Extra doctor’s appointments. Then the child acts out—because of the stress.
Advice: So I would encourage parents to communicate earlier rather than waiting, because that even if, even if the answer is, “I don’t know, but we’re gonna figure it out by asking the right people for help and, and we have a plan to get more information and I’ll update you soon,” that that can make a child feel safe and that can make a child feel like they’re a part of the team and that they’re have some control. And it also invites children then to ask follow-up questions because it’s better that they ask than that they worry or stew on their own.
Warning: Children can get a sense and a sense that something’s going on. And because they have such vivid imaginations, they can actually go to a darker place and wonder if something even more profound is happening to them or somebody that they love. And by talking to them, we put them in a little bit more control, even though it’s out of our control, it makes them feel a little bit more in control, at least knowing what you know, in the way that would be appropriate for that age group.
Self-esteem: It can help a child’s self-esteem to give them that internal script. Sometimes I see children who may be having a learning disability or attention issues in school impacting their learning, and they can tell that it’s coming easier to other kids, or that other kids are, are succeeding more academically than they are. So to give them a script such as everybody learns at different rates or every brain works differently, and we we’ll find the best way to support your learning together. It, it can help it can help them extraordinarily so.
Positive and constructive: Developmental disabilities or even weight issues, children, if they’re, if they’re very thin or maybe a little heavy for their age, they may start to come up with messages of how they’re thinking through this. And as a parent, it’s a gift to give them a message that’s positive and constructive rather than what they glean from, from other children or the media potentially
How you talk to your child has to do with development, age and sensitivity. Younger or a child who has a tendency to get very anxious- they don’t necessarily need to know two months in advance about the surgery. Right. Say your child’s having frequent ear infections and has to have surgery about it you may say, you know, this ear, nose and throat doctor is going help us come up with a plan so you don’t get as many ear infection but you might not say you’re going to have surgery in three months because that’s a long time and they’re not actually going to gain anything by knowing that that’s coming in the future.
Once diagnosed: Can’t live in emergency mode forever. These kids have been diagnosed, especially with something that is chronic or something that is going to take a long time to address like a cancer or chronic or something that they’re going be dealing with for their life, a developmental delay or severe asthma, a food issue, we know from your book that it’s not sustainable to live in an emergency mode and that kids and adults can flip into burnout when they do live there. So what about burnout?
Tie medication to part of their routine- allow the child to take some control and ownership.
Parent has to supervise- novelty wears off. Parent has to troubleshoot.
Be honest: “this is really hard and I haven’t figured this out yet,” or “I don’t know what we’re going to do yet.”
Something can be difficult in the moment without meaning it’s always going to be difficult, that there’s potential for growth, there’s potential for improvement, you’re not, not alone in facing this.
Model positive self-talk: Talking positively to yourself about the challenging moments and sometimes talking out loud because your children will internalize the way you talk through it.
Doctor running late: Model. “Oof, I’m feeling very frustrated. I need to move my body to calm down a little. Like, let’s go for a walk. Or let’s get some fresh air while we wait a few more minutes. And, and then by modeling this kind of coping you can show your child how to respond when they feel the same way (the importance of rest or, or the use of music or humor or relaxing activities).
Top tip: I think the most important thing is to remember that you’re not alone in supporting your child. And while you have a lot of things on your plate, one of the most important things is figuring out who is going to help you and how they’re going to do so. Because in the long run, having that wide base of comprehensive support both for your child and yourself is going to make it sustainable and improve the quality of the care your child gets. So don’t be scared to ask for help and to be open with those in your community about what you’re dealing with.
The only way to break that cycle is, is to be kind of brave and overcome the hesitancy to open up.
One third of children have chronic health challenges in this country, and, and that’s like a snapshot.
Common: That doesn’t mean that somebody had a chronic health challenge a year ago a or will have one next year. The truth is, whether you’re facing the same challenge or not, it doesn’t really matter. The experience of going through and supporting your child who has a developmental delay in getting all the therapies, it shares a lot in common with a child who later is having a mental health struggle.
Feeling left out because child has a developmental delay or chronic illness: it’s a very common experience. I think it’s something people don’t talk about a lot because there’s a hesitancy because you can love your child very fiercely and, and dislike some of the logistics of being their parent and supporting them. Like you can both, you know, delight in your child and adore them and love them and find joy in them and have a hard time with some of the parts of parenting them. I mean, that’s true. Parenting is not always like rainbows and unicorns and, and social media, I think in some ways makes that worse because there’s not always, although I will say I do think it’s increasing people putting themselves out there more in terms of having a dialogue about the ups and downs and the, the, the sort of real experience of parenting. But, but it’s okay to have those mixed feelings.
Notable Quotables:
“Children don’t exist in isolation. They’re part of a family unit and, and we need to talk about that context when we help a child a child…in one family may require a totally different plan of care than a child with the same diagnosis in a different family.”
“It’s definitely a mistake to not prioritize the prevention.”
“As a parent, we can be very tempted to avoid the conversation about childhood illness. We want to protect our child from hard things. We want to wait until we have more certainty or clarity about what’s going on before we have a conversation. But the truth of the matter is that children are very observant and they often know that something is different.
“Something can be difficult in the moment without meaning it’s always going to be difficult. There’s potential for growth, there’s potential for improvement, you’re not alone in facing this.
“The most important thing is to remember that you’re not alone in supporting your child.”
“There is a terrible cycle of, ‘I don’t think anybody else will get it…I don’t think anybody else will understand…So I’m not going to tell anyone…’And then they won’t get it, and they won’t understand and they won’t know how to help. The only way to break that cycle is, is to be brave and overcome the hesitancy to open up.”
“You can’t just assume just by looking at another child that their parents can’t relate. It’s very possible that they can.”
As a parent, we can be very tempted to avoid the conversation about childhood illness, says @KellyFradinMD, on #talktokids podcast. We want to shield our kids from hard things– but they know something is up so let’s open up. Click To Tweet
