Dr. Sarah (00:02):

Ever wonder what psychologists moms talk about when we get together, whether we’re consulting one another about a challenging case or one of our own kids, or just leaning on each other when parenting feels hard, because trust me, even when we do this for a living, it’s still hard. Joining me each week in these special Thursday shows are two of my closest friends, both moms, both psychologists, they’re the people I call when I need a sounding board. These are our unfiltered answers to your parenting questions. We’re letting you in on the conversations the three of us usually have behind closed doors. This is Securely Attached: Beyond the Sessions.


Hello again, Dr. Rebecca Hershberg. Hi. Great to tell you back again this week.

Dr. Rebecca (00:48):

So good to be here as always.

Dr. Sarah (00:51):

So today we’re going to be responding to a mom who wrote in, and Rebecca, you’re going to like this because she’s a little nod to you, but she says, really loving Beyond the Sessions episodes, particularly the one about screen time and holidays, and Rebecca’s beautiful moment of vulnerability. So incredibly helpful to hear.

Dr. Rebecca (01:11):

Oh, pause. Pause. Oh, how lovely. No, really that I so deeply appreciate that.

Dr. Sarah (01:17):

Yeah, if you haven’t listened to that episode, go back because it was a nice little gut check of like, Hey, we feel all the feelings as parents. It’s really, really hard, and we put so much pressure on ourselves. I loved, I was moved by that moment. So anyway, I’m going to return to this email. She says, I’m a mom of two, so she’s from somewhere that says Mom instead of mom. My kids are four and six years old, both girls and the 4-year-old has a rare genetic condition. We are incredibly lucky that the impact so far is relatively minimal compared to other children with the same condition. However, she’s very small for her age, which lots of people comment on. She’s required to sleep with breathing support, which is also noticeable. She also has some developmental delays, particularly in her fine motor attention and emotion regulation. Recently, I’ve been thinking about how to talk to both of my children about this diagnosis, and I would love to hear your thoughts on things to consider and ways to go about telling my affected child and her older sibling. So Rebecca, what comes up for you in thinking about how to respond to this mom, to this mum?

Dr. Rebecca (02:31):

To this mum. I was about to say always, but I hesitate to use always because I’m sure there’s some exceptions somewhere. But off the top of my head, I’m pretty much always in favor of sharing information with our kids in an honest and developmentally appropriate way. And if I use that as my guidepost, then naming a diagnosis I think is important. And again, we don’t have, in this email from this mom, we don’t have the name of the diagnosis, but she says it’s a rare genetic condition. And to the extent that it’s empowering for a child to know not only I have these five difficult things, I have difficulties with attention. I need breathing support. I’m small for my age, but to be able to say, and that is a syndrome, other people also have these five things that travel together, even if it’s rare and it’s not that many people, I find that to typically be a very positive and empowering thing for kids. And certainly that’s true. I would say with more common diagnoses. I think we had an episode where we talked about, I don’t, was it an ADHD diagnosis? I don’t,

Dr. Sarah (03:55):

Yeah, I think we were talking about supports in school and how some kids have trouble always feeling like they want to be the spotlight on them to go utilize those supports and how to support kids around having a little bit more confidence when they have a diagnosis. And I think one of the points that we made that I think is relevant to this is that it can be really relieving for kids to have a thing they can point to, whether it’s outwardly to other people or just internally for themselves to be able to say, this is the explanation for this versus having, I think that prevents a lot of kids from going inward and saying, there’s something wrong with me because I can’t do this and this and this, versus No, there’s an explanation for this that’s outside of me, outside of my control. And it can be a part of who I am. It’s not all of who I am.

Dr. Rebecca (04:54):

I mean, I think the outside of me is the piece that I would underline, and people sometimes name it. I worked with a kid who had OCD and I may have even mentioned this in that episode, but we named it, he called it Okta because that was oc. And then you can blame things on it. You can say, I hate that I have to sleep with this breathing machine. Oh, it’s this annoying X, Y, Z condition and I hate that, or I’m mad at it right now, or I don’t need the full me doesn’t need the breathing support per se. But as you just said, the part of me that has this diagnosis does, and the part of me that hates that can put space between me and IT to be able to understand and express some of the emotions that I have. And it can be really powerful for siblings as well. Same thing. I mean, the fact is you are in a family where one of the members has this thing, and so having the language to be able to refer to it and then have emotions about it and not necessarily about the person. From a clinical perspective can be really valuable in a therapeutic one.

Dr. Sarah (06:23):

Yeah, that’s so helpful. And I’m mindful her kids are four and six, which happened to be the age of my kids right now. And so just thinking about from a language perspective, I have ADHD and I have explained to my kids that I have it because they’ll be like, why do you take that medicine in the morning? What sometimes I struggle with certain executive functioning skills and I want, it’s not about giving excuses or justifying things as much as it’s helping my kids understand that we come in all shapes and sizes and we have different strengths and different challenges. And so my brain is an ADHD brain, and so sometimes my brain really has a hard time doing this and this and this. And so I take this medicine to help me do those things with a little bit more ease. Again, I like to talk about how my brain has a hard time with certain things versus I have a hard time with these things for little kids because I think that concretizing language is helpful, that sort of separating things out. If you have breathing support, my lungs have a much harder time to take in oxygen than other people’s lungs because I have this condition. So it’s also getting very specific and granular on what parts of our body or mind are challenged because of this condition. And so that also, I think it’s in the same service of locating it outside of the person and also being really clear that some parts of me aren’t working the way that they might work for you, but not all of me is impaired.

Dr. Rebecca (08:26):

Yeah, no, and it’s such a gift, I think, to your kids, for example, because let’s say, I’m trying to think of a stereotypical example that may not be representative of you, but let’s say at some point you like space and forget to pick your daughter up from school or something.

Dr. Sarah (08:45):

That has happened.

Dr. Rebecca (08:47):

The fact that she could say, I’m so angry at your ADHD brain. I hate your ADHD brain. It’s like saying, I hate the part of you. Now, she might say, I hate you. I mean, let’s not get carried away. But the idea that you’ve helped her make that distinction and that frankly you can connect with her about that. I hate my ADHD brain in this moment, in this moment. My ADHD brain made me forget about picking you up, which to me is the most important thing in the whole world. And so it helps us when we have these diagnoses really be clear about who we are and what our values are and our priorities and be able to have emotions that may not always be positive about the things that these diagnoses sometimes lead us to need to do or to do by accident or unintentionally.


And I think, sorry, I am just imagining a follow-up question of this mom’s, sorry. I’m going to say that as many times as I can might be, well when the timing of when to tell kids about their diagnoses, and that’s another one where I tend to feel like the sooner the better. Once a child is old enough to understand, and I think there can be a lot of weight put on like, oh no, they’re not ready, or, oh, they’re starting school, or, oh, then they’re going to sleep away. A lot of pressure around when are we going to break this news of what they have. And the fact of the matter is you’re just talking about naming something that they know they have and that they’re going to have forever. And that again, it’s this idea which we’ve talked a lot about on this podcast of just naming what’s real. And I don’t think I’m ever on the side of don’t name what’s real.

Dr. Sarah (10:44):

Well, I also think it makes me think a little bit of when you’re treating child anxiety, for example, avoiding the thing or helping a child avoid the thing can actually inadvertently communicate that the thing we’re avoiding is actually really scary and bad. Even if we don’t think that or want to communicate that our actions in helping a child to avoid it might inadvertently communicate that message. And I feel like that could be applied very much to this. If we are avoiding naming the diagnosis or avoiding talking about it, even if we don’t believe that it is bad or that our child can’t handle it, is it possible that we might accidentally be indirectly, implicitly communicating that message by avoiding it? So I don’t get the sense that this person is avoiding it in this case. But I do think oftentimes it’s like parents aren’t like, I’m not actively avoiding it.


I actually am not sure when to talk about it or how to talk about it. I and I have no problem with it. But then in kind of waiting for the right moment to have all the information and have the right words and know everything, our child may accidentally be inferring, we don’t talk about this. There must be something pretty kind of treacherous about this stuff, even if that’s obviously not our intention. So it’s just something to be mindful of. I think the more we talk about something and the more we sort of have a bit of a nonchalant energy to it, like, yes, this is a thing. It can be really hard sometimes and we can certainly help our child cope with any pain or shame or grief they have around whatever feels lost to them if maybe they can’t do something that other kids could do and that makes them feel have pain or other kids might be mean to them or say things that hurt their feelings. Having that as a space for parents to support their kid in is super important too. And we could maybe talk about that piece also, but in naming it from the get go, it really helps a child to feel like, oh, this is a thing. At least in our family system, I don’t have, there’s so much fluency around this and so much acceptance and it’s just part of life, so much so that there’s no not talking about it. Right. It doesn’t get weighted in that way.

Dr. Rebecca (13:44):

That’s the thing. And also the other thing I always think about, and this has come up on the podcast when we’ve talked about various things, but I always just think about your child hearing it from someone else or hearing, not that a kid at school is going to diagnose your child with a rare genetic condition, but hearing you say it to your friend over the phone or getting a call from the doctor and referring to it and this idea of, wait a second, I have this. Mom’s never mentioned it to me. Dad’s never mentioned it. It must be as you said, really bad because I didn’t even know I had it. And then their imagination runs wild and again, then there’s that implicit, well, you tell me it’s not that bad now, but you didn’t tell me even if you’re telling me now, you kept it from me. So what was that about? I just think you avoid all those possible landmines when you’re open kind of from the beginning.

Dr. Sarah (14:40):

And I’m mindful too, if someone’s listening to this right now and has an older child and they haven’t talked about a diagnosis that they have yet or maybe named symptoms of it, it’s not too late and you’re not going, there are ways to bring it up later on that still can repair any potential filling in the blanks that a child may have done, honestly, just naming that. Right. We haven’t talked about this really in this way before and I realized that you might have even had to guess a little bit about what it meant. You might’ve heard it or weren’t sure, and I just want to let you know that’s totally normal and and also there isn’t anything bad about this or if you have any questions, I will always talk to you about them. You can always ask me questions about it. I don’t want you to feel like you have to kind of make guesses or fill in the blanks on your own.


If you have a question about what this means, we can talk about it. So sort of level setting, if it hasn’t been explicit before, and I always think it’s helpful, I mean depending on how rare it is, it could be harder. But I think it’s also really helpful to do a little research on your own and find out who has this that my child might have as a reference point so that you can point to other people who’ve also had to deal with it, who know what it’s like so they can just feel less alone. I think having books whenever possible, especially if you’ve got younger kids of people who might have this condition or similar types of conditions or just a condition. I’m trying to think of some resources for books. I mean, your library is actually probably one of the best places to go in terms of looking for topics that are very specific because your library and actually has access to incredible databases and can look up books that even your library might not have. So that’s actually a good place to start if you want to find a very specific book for kids or maybe adolescents that has been written on coping with this particular thing.

Dr. Rebecca (17:01):

Yeah, no, I think they’re all really great ideas. And the other thing is I’ve only once as far as I can think, I’ve had a conversation like this with a parent about talking to their kid and their kid really being angry that they hadn’t shared it earlier, which I don’t think is common necessarily. But again, you were talking to the parent of the older kid who hasn’t done this yet, and on the off chance that that is your child’s reaction, the answer was a very authentic, I thought I was doing the right thing. I was trying to cut weight for the right time. And it turns out there never was one. And here we are now again, I think we may be getting kind of off topic, but I think kids can have all kinds of reactions depending on when and how you tell them. And there’s never anything wrong with acknowledging I was doing what I thought was best, and I’m sorry that it turns out I missed the mark. Thanks for letting me know if I could do it differently. I would that kind of authentic apology and repair, which we’ve certainly talked about a million times.

Dr. Sarah (18:04):

Yeah, no, I think there’s, and the fear of having to do that repair being maybe the barrier to entry and having a more direct conversation. I think I get that. I think sometimes the more we let something we’re avoiding grow the scarier it feels to actually address it, but I do think no child is really going to be upset about you addressing it and repairing about it. So it’s always better to just go there now because in 10 years it’ll be harder. In one year it’ll be harder. One other thought though that I’m thinking of what this mom was saying in her message was that she was also asking about how to talk to the sibling about it, which I think is so helpful and wise of her to recognize that this isn’t really just about one child in the family, it’s about the family system as a whole and everyone in that family, and especially there are other kids in that family, those kids need support around how do we talk about this?


How do I feel about this? Because I know that you, Rebecca, do a lot of work in your practice around family systems. People aren’t really familiar with this idea of a family systems approach. Basically the idea is like everybody within the family system has a role and sometimes those roles can be very fluid and flexible and healthy, and sometimes we can get entrenched in particular roles. And one of the things that a family with a child who has aab medical issue or medical condition is very vulnerable for is for certain parts of the family system. Certain people to again get stuck in the sick child role and the well child role or there’s a lot of things that can happen in terms of the sibling of where there can be, maybe they take on more perceived pressure to be always easy because their other sibling maybe has more needs and so they don’t, maybe unconsciously just don’t want to rock the boat ever.


And so they internalize more. That’s something to be mindful of I, because it can be important to support a bigger, whether they’re older or younger, but sort of the non afflicted sibling so that they know they can take up space and also that they can have empathy for the sibling. That takes up a lot of space sometimes or family resources. There’s other things like sometimes the non-affected sibling can be more reactive or feel like the only way they can get her or get their needs met is that they get really loud. So it can kind of show up in lots of different ways, but there could be a lot of family dynamics that happen as a result of somebody in the family having a medical issue, chronic medical issue. And so more than we’re going to be able to get into on this one episode, but if you are noticing kind of people in the family getting entrenched in a particular role and having maybe some reactivity to it, or maybe you’re just noticing the reactivity and you’re not exactly sure why, that would be a really good reason to potentially consider family therapy or even just consulting with somebody who does that work, just to kind of get a sense of how do I support both of these kids or all of these kids, or how do I support the family system as a whole?


I feel like that’s worth mentioning. It can be really, like I always say a family is like a spider web cannot pull. You pull one thread and the whole thing moves. You can’t isolate anything in the family system. It’s all interconnected.

Dr. Rebecca (22:25):

Absolutely. I agree with everything you just said, and I think a family systems lens, honestly, for so many of the topics we talk about can be so valuable. So I applaud this mom for asking this question in a way that took both of her kids into account, and I hope the way that we’ve answered has been helpful, not only of course to this listener, but also to other listeners who have the same questions.

Dr. Sarah (22:54):

Yeah. Yeah. So I’m glad you wrote in. Thank you guys so much and we’ll talk soon.

Dr. Rebecca (23:00):

Sounds great. Thank you.

Dr. Sarah (23:04):Thank you so much for listening. As you can hear, parenting is not one size fits all. It’s nuanced and it’s complicated. So I really hope that this series where we’re answering your questions really helps you to cut through some of the noise and find out what works best for you and your unique child. If you have a burning parenting question, something you’re struggling to navigate or a topic you really want us to shed light on or share research about, we want to know, go to drsarahbren.com/question to send in anything that you want, Rebecca, Emily, and me to answer in Securely Attached: Beyond the Sessions. That’s drsarahbren.com/question. And check back for a brand new securely attached next Tuesday. And until then, don’t be a stranger.

✨We want to hear from you! Go to https://drsarahbren.com/question to send us a question or a topic you want to hear us answer on Securely Attached – Beyond the Sessions! ✨

213. BTS: What’s the best way to talk about my child’s diagnosis with her and her sibling?