Kelsey Mora 6:47
Definitely, yeah, and the age of the child, and you know, just the situation. Sometimes it’s sudden, and a parent is hospitalized, and there’s a traumatic medical event at home. Sometimes it’s, you know, there’s there’s series of testing that takes place before information comes in. So those experiences can look really different from child to child to family to family.
Dr. Leigh Weisz 7:05
Yeah. And so you typically would, you know, consult with the parents and really, again, understand all these different variables to help them in terms of how they communicate all of this with their child.
Kelsey Mora 7:17
Yeah, yeah, I often try to help parents slow down a little bit and start with like, what’s happening right now? What’s right in front of that child? And then then those conversations can build on themselves over time, I think it can be really overwhelming to feel like you have to cover everything in one conversation. But that’s, you know, not what kids need. They just need kind of bite size information and to understand what’s happening right in front of them. Right.
Dr. Leigh Weisz 7:41
Oh, absolutely. Talk about talk about overwhelming 100%. Yeah, maybe you can share a little bit about I know, you mentioned your really dear friend who was diagnosed with breast cancer a few years back, and kind of how you coached her to talk to her own children about cancer.
Kelsey Mora 7:59
Yeah, so my friend, Laura, it was 2020. And she was diagnosed with breast cancer, it was like, just about a week after I had had my first child. And I remember I got the text from her and was completely shocked. It was August of 2020. And so middle of the pandemic, and she had two young boys, and was like, I don’t know what to say to them. She was a nurse, a mom, and she didn’t have the words, you know, in that moment, she was hurting and grieving and facing so much. At the time, I had just established my resource, the dot method, but it was just a document on my computer. And so I told her, I have this resource that I’m working on, I’m happy to send it to you and let you, you know, play around with it and use it. And so I did I email that to her, she printed it, and used it, there’s a picture of her son using it from from then. And he’s now much older and doing really well. But it’s essentially a body outline where kids learn about the cells, the healthy cells and the cancer cells, and they crossed them out and talk about treatment and side effects. And they walk them through the whole process in a hands on child friendly way. So she used that tool, and it really helped her kids, it gives you the words, but it’s also hands on playful and interactive.
Dr. Leigh Weisz 9:14
I should just show everyone. So this is the workbook The Dot Method. And I was saying to Kelsey, before we started recording, you know, it’s, it’s really, in a lot of ways, like, simple to use rates user friendly. And you can see these pages are really user friendly, but it’s not cookie cutter right? You can make it meaningful to your own experience based on what age what experience if it’s, you know, chemo versus you know, radiation all the different choices versus the surgery. It’s really amazing resource. I’m sorry again that you have had to use this with your dear friend but I’m glad to hear she’s doing okay now.
Kelsey Mora 9:59
Yeah, Yeah, and I think that’s, you know, being able to customize it. And now actually, now that the workbook is it’s actually dedicated to her family. So it’s dedicated to the Welker family, and they now have gotten to seen it and see it and do it again. And the oldest, you know, was reflecting on his experience, like, yeah, basically just put these like dots on a body. And it’s so simple, but I learned so much. And he was really talking about how it could help other kids, but even just putting the sextile to the cancer cells, you know, in the location of the cancer. So in their case, they were putting them on the chest or on the breast and learning about, you know, the body parts and where the cancer is taking place. And if it’s a, you know, a mom who’s going to get a mastectomy, then it’s easier to understand why they’re going to take the breasts away, because they’re going to get rid of the cancer cells. And so, again, these concepts are so complicated, and yet, this approach really helps to simplify it in a way that can feel more approachable for parents and kids.
Dr. Leigh Weisz 10:56
Yeah, and empowering. I got it, like you feel somewhat more in control when you’re able to, like, have this visual and dried. And, you know, I can imagine, yeah, you can suck it out cancer. I was like, yeah, go into, you know, obviously, we don’t really have control, but it feels it feels empowering in that way.
Kelsey Mora 11:12
For sure. Sure. Yeah, the kids like crossing out the dots is really therapeutic and, and making sense. They just, I just worked with a three year old who’s struggling with hair loss. And so we put a bunch of the healthy cells on the head, and then talked about how like, the chemos, you know, getting rid of those healthy cells, which includes the hair, and it will grow back. But that’s why that happens. A lot of people. You know, a lot of kids don’t understand why those things happen, or why, you know, the men normally medicine makes me feel better. This medicine makes me feel horrible. Why, you know, it’s like, well, it’s getting rid of those healthy cells. It’s so so strong. And you know, it’s helping, yeah.
Dr. Leigh Weisz 11:47
I worked back in my training at John Stroger Hospital of Cook County in the pediatric oncology unit. And I could have really used this because just those exact kinds of questions would come up a lot. But this was, obviously for the kids who were sick themselves. But yes, when the when the hair is falling out when they are lethargic. To understand why in this visual way is really is really helpful. Can you tell us a little bit about, you know, maybe a family you’ve helped where yeah, like a little bit more in depth where a child was diagnosed with cancer, as opposed to the grown up and how you like what kind of language you would use, you know, maybe someone as young as three to five age range?
Kelsey Mora 12:27
Yeah. Yeah. So I mean, I would use similar language, I always encourage parents to use the language that they’re comfortable with, I want to meet them where they’re at, I can a lot of parents fear the C word, the cancer word. And often I’ll tell parents, you know, the risk is that someone else may use that word. And we do want kids to hear it from their most trusted adults. But with really young kids, there is a way to use this, this approach without using the word cancer, we can talk about six cells and healthy cells or bad cells and good cells. And so I have had some really young kids that have used that language and, and then it’s, or even the colors, so in the workbook, they pick the colors, and then they’re talking about maybe pink cells and blue cells or something like that, and you know, finding their own language, but it’s so empowering for these kiddos who are going through the treatment themselves, they’ve got you know, a port, or, you know, on their chest where they get the chemo. And so being able to, like draw that on the body in the workbook or design the hospital or where surgeries take place. And, and, you know, not be the patient, but be acting more as like the provider and by drawing and creating can be really therapeutic. And there’s just so many ways to modify the book. I’ve, I’ve used it with like dot markers, I’ve used it with pom poms, I’ve used it with pipe cleaners and stickers. And so it’s so customizable. And so that’s, you know, when you’re asking you know about the age or who has the cancer, it can just look so different for every family. And so, yeah, I’m I mean, I’m thinking of a lot of three year olds that I’ve used this with, where we’re doing a lot of hands on work and kind of figuring out what their language is. There’s also a section in the book about feelings so that kids can draw, like faces that match how they feel. And so they’ll draw like a happy face and talk about feeling happy and how it’s okay to feel happy sometimes, but then also sad or scared. You know, especially for siblings, that can be really impactful.
Dr. Leigh Weisz 14:21
They’re a sibling of a child with cancer, right? They think they’re supposed to be sad all of the time throughout this treatment, you know, if they have it, or if they’re, if their sibling has it, or their parent has it and of course, they’re they’re loud to the kids and have normal happy moments where they’re not thinking about the cancer. But it sounds like you do a lot of normalizing all the emotions that you might feel. And yeah, there is no right or wrong way to feel.
Kelsey Mora 14:44
Yeah, yeah. And I mean, I used to just take like a big I still do this sometimes take like a big piece of paper and I’ve even done like body tracings where we’re doing The Dot Method portion of the workbook. Yeah, yeah. That’s how there’s so many ways to use that body.
Dr. Leigh Weisz 14:58
Yeah, we have show Oh, look at the page that you showed me with the port that you made out of. Yeah. What? What are you used?
Kelsey Mora 15:06
Yes. Yeah. So I used to really need the poor and then the pipe cleaner is like the IV tubing. And then here’s the chemo up here. And so, you know, this, there’s treatment was green. And so we use the green pipe cleaner. And then you can see it’s crossing out, you know, the cancer for this child. It was a, it was a, a tumor on their kidney, and then they were grappling with hair loss.
Dr. Leigh Weisz 15:29
So yeah, that’s amazing. Yeah. Again, such a neat way to do it. It reminds me a lot of play therapy and our therapy that we use, of course, with children all the time when they’re going through something that, you know, it’s sometimes it’s too hard to say, I’m going through this, but with little dolls or figurines we kind of enact you know, have them act out what’s happening. And it’s a similar again, a similar concept.
Kelsey Mora 15:52
Yeah, yeah, I had one child, who was really a new emojis. You know, emojis are really exciting for kids. And so, yeah, so she was actually wanting to use emojis on all the pages. So with the feeling face page, she used like, specific emojis. And then there’s a page for side effects she wanted to, we were actually working virtually. So I would share my screen with like Google Images of emojis and she’d pick like, Oh, I like that throw up emoji. Like, I’m gonna put that on the side effects page, because my dad would throw up a lot or, you know, the really tired one. And so using lot of those emojis and then there’s, it talks about coping skills. So on the coping skills page, she was she found an emoji of someone, like meditating, because she would use meditation with her mom when she was upset. So like, that, like those, like unique ways that kids are like, Yeah, I want to use emojis. I’m like, Great, let’s do it can be so so cool. It’s like it’s yours. It’s your little workbook.
Dr. Leigh Weisz 16:43
Ya know, it’s, again, really powerful, just to kind of hear how you’re utilizing this in different ways. What would you say? For parents who know they have terminal cancer? I know that I have several adult clients where this is like, their fear life. They don’t even have an illness. But their fear is, what if I die before my time? You know, and I’ve kids who need me? What, tell us a little bit about the work you’ve done with with parents who are in that stage? And obviously, how it how it differs from the kids who are being coached to kind of understand what the treatment is, but we assume the parents will actually be survivors.
Kelsey Mora 17:25
Yeah, yeah. I mean, I actually work with a lot of different prognoses and outcomes. And of course, there’s so much unknown and uncertainty that comes with a cancer diagnosis and to begin with. And so for the, for the purposes of the resource, I’ve actually incorporated a page where I talk about, you know, we all share the same goal of getting rid of the cancer cells, when that’s not possible, we might focus on you know, keeping them small, keeping them calm, like having good days. So I do incorporate that for kids whose experience is uncertain or unclear. But I think the big thing is like starting those conversations earlier, so that if you know, we’re starting to talk to kids, at the time of a diagnosis, we can build on those conversations, rather than waiting till there’s a big change in prognosis or a recurrence. And then we’re sitting down and having chalk about everything all at once that can be so hard for parents and for kids. And so I really talk about starting early and starting small with like bite sized conversations, and then you can build on it over time. If you’ve had a whole conversation about cancer cells and how treatment works, you can go back and say, you know, I have some hard news or I have some sad news, you know, the treatments not working, it’s not getting rid of those cancer cells. That means that I will die, right? And it’s a really hard conversation, but you’re not starting from zero, you’re starting from remember, we talked about those cancer cells, and we talked about the treatment. And then I always recommend that warning sign of like, I have some sad news to tell you and then kind of, you know, getting into the honesty of what’s happening. Sometimes that’s not possible to start early. And that’s okay, too. But again, you know, you want to start small and simple and just talk about what’s, you know, what’s right in front of them what they need to know.
Dr. Leigh Weisz 19:09
Wow, yeah. Wow. And I know, there’s they do have typically child life specialists, like in the hospital too, but it’s really nice that you don’t have to wait till you’re in a hospital setting to get this information if you’re, you know, earlier diagnosis or not at that stage that you can actually consult with you about about these things.
Kelsey Mora 19:28
Yeah, yeah. And that, you know, as a previous hospital based child life specialists, the landscape is tricky. There are times when a family doesn’t meet a child life specialist, or the interaction is maybe brief, or it’s focused on like a procedure and then they you know, don’t have the time and the space to really dig into these deeper conversations. And so a lot of childlike teams have requested copies of the dot method or you know, I consult in my private practice I could so a lot with home based Child Life teams, I might work with the child at home and then I’m telling the child like Just like, here’s the coping plan we came up with for the report access, there is actually very limited childlike support for children who have a parent with cancer, we would get paged a lot to the adult side, and we just weren’t able to engage in the way that we would have liked. And so I said this, again, the workbook is available for all cancer experiences. But I’m also the Chief Clinical Officer of Pickles Group, which you mentioned at the beginning. And that’s a free nonprofit organization, I do a lot of talks on how to talk to kids about cancer, we have, you know, many free resources, and then youth, youth groups for the kids, so kids to meet other kids who have a parent with cancer. So that’s really trying to fill that gap, when you know, a parent is in the hospital, and there’s not a child like special so there’s not a dedicated social worker for that need. And that question they can they can be provided with pickles, group resources as well.
Dr. Leigh Weisz 20:52
Amazing. Can you tell us a little bit more in depth about working with a child who had cancer or has cancer and in terms of like you said, there’s pain management techniques that you’ll do with them. But addressing again, if this if it is, and that’s a good stage, addressing just missing school, and normal child kind of things kind of get a little bit more in depth, just so we can get a sense of that kind of work to?
Kelsey Mora 21:19
Yeah. Wow. Yeah, there’s a lot. So I think, obviously, explaining the diagnosis is so helpful for so that kids understand why things are happening. You know, why? Why am I tired? Why am I missing school? Why do I have to go to clinic? Why do I have a poor? Or why does my sister have a poor all of those questions. And then so much is like validating the feelings that come with that. I think parents really struggle with typical child development and parenting, when a child has cancer, like, suddenly bedtime is really hard, or there’s challenging or concerning behaviors happening. And so the more we can coat, I coached parents a lot on trying to maintain some of that typical child development, routine structure, discipline, even, just to make to provide a sense of control because things feel completely out of control, chaotic, unpredictable, and kids need that structure. But parents do as well. As I always hope that there will be, you know, a time when we’re not so overwhelmed with cancer, you know, that the things that are better for regardless of what outcome and so if we get too far from what’s normal, it can be really hard to restore that. And so trying to coach parents on how to find that balance of, you know, nurturing and supporting their child, but also maintaining some of that normal growth and development. So we do we do a lot of that the pain management pieces, coping with, you know, procedures and hospitalizations, and side effects. helping empower kids with their own story for navigating like peer interactions, how do I talk to my friends about this, when I do go to school, you know, why I don’t why I’m losing my hair, or why I wear a mask, or, you know, why I don’t feel good or things like that. You know, for siblings, as well, there’s a there’s a lot that goes into this, and some of it is addressed at the hospital, but so much happens at home. I was just working with a young child who was really struggling with like bath time, because they had an incision from their surgery and a port. And we had to work up some comfort and an understanding just about, you know, bath because the parents were like, that wasn’t her favorite thing before this. And it’s like, well, her body is so different now. And so there’s a lot, there’s a lot food, food, eating, sleeping, you know, just a lot of a lot of changes that can happen.
Dr. Leigh Weisz 23:35
Yeah. Can you give us an example of a of a method for the pain management? Like, is it more visualization? Or what kind of things like almost as though you’re doing, you know, what would you do? Yeah, a hospital with a child or, I guess prep the child for this in advance? Yeah, yeah. And so there’s medical treatments, you know, in addition, hopefully more benign struggle. So I would love to hear more about this, too.
Kelsey Mora 24:00
Yeah, absolutely. So I try to work on like establishing what I call coping plan. And so we always want to prepare kids for what to expect using age appropriate information. I have an Instagram page Child Life therapists where every Monday I post like how to teach kids about something and so today, it was how to teach kids about CT scans. Last week was a spinal tap or lumbar puncture, which is a common cancer procedure. And so a lot of it is preparing the child what pain management strategies are possible. So for like a blood draw, let’s say I’ll do one that’s maybe a vaccine a shot. Yeah, like there’s there’s numbing cream. There’s a buzzy bee. There’s like a shot blocker. Some of these things are available on like Amazon.
Dr. Leigh Weisz 24:42
Some are more recently but yeah, yes. Yeah.
Kelsey Mora 24:47
And then comfort hold. So you know, sometimes you go to the pediatrician like I I’m a really strong advocate as a child life specialists and a mom that you know, if I’m told to like, hold my child down, a lot of times, I’m like, wait a minute, like I think we can find a more comfortable position, if kids can be upright, that’s always better. We obviously want things to be safe. We don’t want to compromise, you know, the comfort of the provider, but certainly, like, upright is always better. And then, you know, prepare. So preparing the child operating in a croissant.
Dr. Leigh Weisz 25:15
You’re saying sometimes a pediatrician in a procedure was to like hold the child down, like horizontal.
Kelsey Mora 25:20
Oh, like, even just a baby, like put them down, you know, if I can have my child on my lap, like I feel very comfortable with that position. And if I can, like hold them and keep them from grabbing things, they’re wiggling. Not sure. Yeah, yeah, just like that laying down position is very, very extra frightening, and then distraction and relaxation techniques. So you know, sometimes it’s distraction, where we’re trying to get their mind off of it, like using a show or using a toy or using bubbles. Sometimes it’s actually like more mindfulness strategy. So you know, talk about the difference between taking their mind off of it and turning their mind into something more helpful. So of course, deep breathing, visualization, or guided imagery, sometimes with younger kids will talk about, you know, imagining your favorite place or like a Fantasyland, rainbows and unicorns, like, close our eyes, let’s use all five senses, you know, taking deep breaths, co regulation, all of those strategies that we use in, in everyday parenting, but really applying it in that stressful situation. And then facilitating recovery, you know, helping them recover afterwards. It’s normal for a kid to cry, like, you know, if it’s not like about like, don’t cry, or, you know, it’s, we really just want them to feel like it’s okay. It’s okay to cry, you know, you’re trying so hard to hold still, like, even if the procedure was a disaster, we still want them to feel like they did a good job, because it is scary. And it is hard. So yeah, and I so I talk a lot about just kind of like, setting up and then you know, the during support and the recovery, but giving kids a lot of choices, like do you want to, you know, hold my this hand or this hand, do you want to look and a lot of people say don’t look, some kids want to watch. So that’s like a reasonable choice to you want to watch or look away? Right?
Dr. Leigh Weisz 27:05
Oh, I love that guy. You’re empowering them in any way you possibly can. It sounds like, yeah, how do you decide between distraction? And like you said, kind of like using the senses and really being mindful? How do you know which call is correct in each situation?
Kelsey Mora 27:23
Yeah, I mean, I think a lot of it is assessment, and I, you know, childlike specials are amazing. I mean, I am one but I feel strongly about the field. But it’s a misunderstood field. A lot of people think it’s kind of like, you know more about playing, but the play is so purposeful, so like iPads or something that used in the hospital, and you’ll have the child life specialists walking in with the iPad. Sometimes people make, you know, inadvertent comments like, Oh, thank goodness, the iPad is here. And it’s like, no, like, the professional is here. I’m just using an iPad. So I think it’s like, you know, assessing what the child needs. Sometimes you notice that a child is like not distractible, because their stress response is so incredibly high that they can’t actually engage in a toy. And so that’s when I’m like, Okay, let’s pause, like, take a deep breath, I’m right here with you, like, I’ve got you mom’s gonna hold you whatever we can do to, like, reduce the noise in the room, both physically and figuratively. And then, you know, you’re blowing bubbles. And then everyone’s like, wow, look at the bubbles. And suddenly you have like, 10 people talking, and it’s super overwhelming. And so just like reading the room, and I always say to parents, like, you know, you know, your child best. So trying to figure out what’s going to be most helpful for them. We cannot sometimes we have to stop giving choices. Because if a child’s not cooperating, it’s like, Okay, it’s time for the pope now, like the Pope is not an option. You could choose this or this. And if you’re not choosing, like, I had to choose for you.
Dr. Leigh Weisz 28:41
So I do set a lot of women when I hold my you know, do you want to hold my hand? Or do you want to hold you know, a stuffed animal or something? And they’re like, spending hours deciding the anxieties building and building at some point, right?
Kelsey Mora 28:53
Do it you’re saying of course, yeah. Like, okay, it seems like you’re not in a place to make choices like I’m going to choose for you, I’m gonna help you get through this, that poke is not a choice, like, I’m right here with you. So we do have to set limits, I think we try as much as we can to like, give empower kids and when, at the end of the day, sometimes we just have to get through it, but we just want to try to make it as minimally like invasive and traumatic as possible. And also parents, you know, not reducing your own anxiety and stress response, because so much of kid’s anxiety is is, you know, in reaction to a parent’s anxiety, so taking your own deep breaths, you know, so that you can be your child’s best support.
Dr. Leigh Weisz 29:31
Right, staying as calm as you can under the circumstances in the room with them. Yeah, yeah. Oh my gosh, which again, is like you’re asking, we’re asking you so much of parents. I mean, considering Yeah. Oh, how emotional this must feel to be in the room with with your child who’s going through this procedure, but you’re absolutely right. They read you and they look to you and I okay. You okay.
Kelsey Mora 29:54
Yeah. And so like sometimes it’s the child life specialists that end up being the person like holding the child or talking to the child and now just validate, you know, mom’s crying because she loves you so much. And this is really hard. But I’m right here with you, you know, sometimes we just have to step in and support both the parent and the child. It just depends on the family.
Dr. Leigh Weisz 30:11
Oh, unbelievable. I mean, it’s so it’s just so emotional thinking about this topic, honestly, it’s, it’s really, we’re blessed that we have you doing this type of work, because I don’t know that many people were like, This is my life’s dream to be in the hardest moment. And you really are. But it’s also probably really fulfilling because you’re also really helping people in this deep, meaningful, impactful way. How do you feel for you when you’re, you know, in these moments with these families?
Kelsey Mora 30:41
Yeah, I mean, that has always kind of been my motto is like, I can’t control the situation, either. But I can control like helping and supporting a family, I used to always say, like trying to make difficult moments into better memories. I mean, I was in the pediatric ICU for almost a decade. And it was really alongside extremely hard moments for families, including both like acute and critical illness, as well as end of life support. And it was amazing, I loved it, I didn’t leave the hospital because I didn’t love it, I left just to take on like different opportunities and also as a mom now, but now I’m helping parents and families in kind of the heart of illness that happened at home. So you know, taking medication coping with going to school coping with friendships, you know, getting in the bathtub, going to bed, you know, kind of the day to day functioning and the anxiety management in the context of medical illness. So I’ve now, you know, I went back to school several years ago for counseling. And so now I’m kind of bringing those two professions together the child life and the counseling to help people cope beyond the kind of that acute crisis response, but I wouldn’t have, you know, I always say like, that my time in the hospital definitely makes me a better, you know, independent professional. And I think, you know, also, being a child life specialist makes me a better mom, and being a mom makes me a better child life specialist, because I, I can relate differently now too.
Dr. Leigh Weisz 32:02
Absolutely, absolutely. Can you tell us a little bit about working with a teenager, and we talked a little bit about the little ones, but teenagers have their own developmental tasks, right, and often is being away from home and being away from, you know, parents and separating? So I’m curious kind of how that looks in the context of if they have their own illness?
Kelsey Mora 32:23
Yeah, absolutely. And before I do that, actually, I’m thinking, you know, I want to add that everything we’ve just talked about also applies to like, really young kids, like my one and a half year old had a surgery, and I was preparing her and showing her like the anesthesia mask. And so, you know, we shouldn’t dismiss these infants and toddlers, either because they, you know, they actually know and understand so much, and it can really help them. And for T and D, I think that the infants and the teens are kind of the two that get them get missed. Sometimes. I think not under estimating what a teenager understands. They may have misconceptions as well. And if, if we don’t help them know that it’s okay to talk about it with their adults, they may not feel comfortable talking about it, they may talk to their friends about it, they might research and get unhelpful or inaccurate information. So we can be that, walk that path with them and for them. But also, the big thing is not forcing teenagers to talk, just being like a consistent, supportive presence. You know, I’ve had I’ve had teenagers shut the door on me, as you know, there isn’t a counselor, and I’m often like, that’s fine. Like, I’m gonna stay here, like, I’m not giving up on you. So I think just being that consistent, reliable presence, I think the I think parenting teens with chronic illness is so much about trust, just being present trust, and, and empowering them, right? They are, it’s their body. It’s you know, a lot of times teenagers want to be in the room having discussions, you know, with the doctors, but not overlooked that they’re still a child and they need their parent. And so it’s like that tricky balance of like, you are the patient, this is your body, I’m going to empower you I want to protect protect your privacy, and like you don’t have to navigate this alone. I think finding that balance looks a little bit different for teenagers.
Dr. Leigh Weisz 34:08
Absolutely. And are they’re usually in the hospital setting other teenagers like do they do more group work at that age? Because I imagine they would respond well to having more peer support, too.
Kelsey Mora 34:20
Yeah, yeah. I mean, pre COVID We and we had a teen lounge at the hospital and a playroom. And so we would get kids together and out of the room as much as possible. I mean, I think with virtual there’s a lot more options now to get kids cook together in different ways. Because there’s also sometimes in the hospital kids are on like isolation precautions where they can’t leave their room. And so that can be really isolating. So, I mean, we’ve done like virtual proms we’ve done you know, virtual like different ways to engage teenagers that peer support is huge. For sure. And yeah, there was something else you said, but I lost my train of thought maybe it’ll come back to me.
Dr. Leigh Weisz 34:55
Amazing, ya know, again, I’m hoping I’m hoping we don’t have enough people. In these situations it merits it. But I was gonna say, Do you do any of these things in your private practice in terms of like setting up support groups or networks for families who are struggling?
Kelsey Mora 35:09
Yeah, I mean, I try to connect kids and teenagers within my practice with both of their permission if it feels like it would be a helpful connection for both families. I have done groups in the past, I did a chronic illness group routines. And I did a grief group I was working on I see a lot. I haven’t talked about it on this yet. But I see a lot of kids impacted by food allergies. And a lot of kids should go ahead. Yeah, a lot of kids that are doing like oral immunotherapy treatment. And so I was working on setting up a peer group for that it was just hard timing, like, end of school year. But that’s like been a strong request for, you know, meeting other kids like I’m working with a 12 year old who’s going away to summer camp, and he has to do his MIT jokes. And he misses basketball, when the kids are all playing basketball, because there’s a lot of guidelines around taking the dose that people don’t really know or understand they have to hold still or not hold still, but be kind of inactive for a couple of hours. And so, you know, camp, there’s not a lot of downtime at summer camp. And so, you know, helping kids not feel so alone in that. For pickles group, we do peer group. So for kids who have a parent with cancer, we put kids in peer groups, age based, so we have like exclusive teenager groups. And that was actually the thought I had is when a kid has a parent with cancer, you know, they, they struggle with, like, trying to be a kid and be a helper. And so I try to help parents, you know, prioritize what’s important to those teenagers and not ask too much of them. But also give them a reasonable amount of responsibility so that they do feel involved and helpful. But I think a lot of times the oldest sibling can get like a lot of responsibility. And so we have to be, you know, cautious of finding that balance. But um, but pickles group provides that peer group experience for kids who have a parent with cancer. And I would like to do more of that, in my private practice for some of these other types of illnesses, for sure.
Dr. Leigh Weisz 36:55
It’s incredible. Um, tell us how you got involved into the food allergy realm?
Kelsey Mora 37:01
Yeah, I honestly don’t even remember how it started. It just really took off. I mean, it’s, I just, there’s so much misunderstanding. It’s common and misunderstood. I mean, it is that it makes sense as a child life specialist to work with kids with food allergies, I literally just had skin testing myself last week for environmental allergies, and like, it’s so uncomfortable. You know, my arms were like, Welling and red and itchy and addled still. And it’s like, this is a procedure. This is a medical procedure. I have that expertise, you know, supporting kids with skin prick test, their IT dosing, coping with being you know, quote, unquote, different than the other kids not understanding a life threatening illness carrying an EpiPen. Like, people just don’t understand how much food allergies impacts a child, a family going to birthday parties, Halloween, you know, Easter, like all these, like, holidays that are so food focused and candy focused, and, you know, sleepovers. And so it makes perfect sense. Yeah, and manage managing anxiety because I teach a lot of these kids about the physiological anxiety symptoms and how those can look really similar to allergic reactions. You know, my tummy hurts, my throat feels funny. And so helping them distinguish that because they’re there, they do have a lot of fear. And so yeah.
Dr. Leigh Weisz 38:24
So, it’s just a relation between food allergies and anxiety?
Kelsey Mora 38:28
Absolutely, yeah. Yeah. And I, you know, helping parents to you know, when your child is diagnosed with food allergy, so young, you know, you you’re, it’s so scary. And you have to figure out how to manage the anxiety and, and live with the food allergies. It’s lifelong. It’s, it’s chronic. So, I don’t know, I think I there’s a food allergy counselor network, which I know you mentioned at the beginning, the name just changed. I think it’s like food allergy Academy of counseling or something. But I’ve been part of that for a while. And so I do get a lot of referrals for food allergies, and there’s not a lot of people specializing in that area, especially those who work with young children. So it’s just kind of, you know, taken off in this niche and and I have a physician I work with who says like, it’s usually the anxiety that gets in the way of us completing treatment. It’s not, you know, actually the reactions are the allergies themselves.
Dr. Leigh Weisz 39:15
So, right. Oh, my goodness. Absolutely. I had a family and a family member who had to go through that the dosing treatment. I forgot the official name say it again.
Kelsey Mora 39:25
I owe it oral immunotherapy.
Dr. Leigh Weisz 39:28
Yeah, yes. But we will find creative ways to put what she needed for these all these different knots in you know, cookie for him and smoothie for him. But for Ken was so sick of them.
Kelsey Mora 39:40
Yeah, like I’m sure a kid who doesn’t have food allergies would be like, Oh, that’s so cool. You get to eat like 10 Peanut m&ms every day. And the kid who has to eat the peanut m&ms is like, I hate the smell. I hate the taste. I’m scared of it because I’ve been told it could kill me and I have to do it everyday like medicine. Like it’s not it’s not fun.
Dr. Leigh Weisz 39:55
No, very. Absolutely. No, I think again, there’s such a need to hear Have more expertise in this area for for kids who are struggling with that?
Kelsey Mora 40:04
For sure. Yeah, there’s a lot of pokes too. I mean, the epipens and the, you know, getting blood draws usually annually. And I’ve seen a lot of patients who come to me after they’ve had like an anaphylactic experience. And there’s a lot of fear, you know, after that/
Dr. Leigh Weisz 40:20
I mean, it’s terrifying, for sure.
Kelsey Mora 40:22
Yeah. And most kids are, they can live really well on be safe with food allergies. But you know, working in the pediatric ICU, I did see some of the more severe, you know, reactions. And so I think that’s another reason why I got into it is because I saw the the impact of when it’s, you know, when it’s really severe?
Dr. Leigh Weisz 40:38
Absolutely, absolutely. So, you’ve, you’ve shared a lot of wonderful anecdotes, and kind of like stories to help us understand how you use your expertise, and also your work work book across sort of the lifespan, as an ask if there any other stories or kind of anecdotes that you wanted to share or any other kind of helpful advice?
Kelsey Mora 41:02
Um, that’s a good question, I think. I think that, you know, I, in counseling, they don’t really cover a lot about illness or grief. And in Child Life, we don’t necessarily cover a lot about, you know, traditional counseling, and like mental health diagnoses and treatments. And so being able to bring those two things together, and there are so many incredible therapists in practice, like yourself that are supporting kids and teens, you know, struggling with mental health, anxiety, depression, and so to be able to kind of be in this niche space where, like, if I get a call for traditional anxiety, I’m, I’m often like, there are so many wonderful people who can treat that, like I want to really focus on these medical illnesses and grief, because it’s really, it’s really a specialty, and it’s not something that everybody understands. And for a pet when a parent calls me, and they don’t have to explain, you know, what a PICC line is, or what meds their kid is on, like, it’s such a relief, to not have to share their whole story, you know, my kid is 27 surgeries. And I’m like, Yep, I know exactly what that is, like, it’s just a different experience. And so, I’m really glad that I’ve been able to just specialize and help people that are really in this unique, you know, it’s like situational, like they they might not have the challenges with anxiety, had they not had the chronic illness or the grief. So it’s, you know, I talk a lot about it’s not really like a pathology to fix or change. It’s more like a situation to respond to and to support. And so I just approach it a little bit a little bit differently.
Dr. Leigh Weisz 42:32
Absolutely. Absolutely. You’ve shared a lot of resources with us, including your own workbook, and pickles, big one. Any other really helpful podcasts or books or resources? For anyone struggling with cancer, again, childhood cancer, or a parent who has cancer?
Kelsey Mora 42:55
Yeah, I mean, there, there are several out there on the Pickles Group website, I do oversee like a resources page. And so I try to update that with different organizations and books and things like that both for end of life and for cancer. And so that’s a great place to look. And yeah, I mean, Pickles Group works a lot with like Bright Spot Network and Kesem, and Wonders & Worries worries for like the parent illness piece. And you know, Dragonfly Foundation in Chicago, and Ohio is a pediatric cancer. That’s the organization that has funded the dot method for all the Chicago pediatric oncology centers. So I’m really grateful to them and they do a lot of wonderful supportive work for pediatric cancer in the Chicagoland area. But that probably is just scratching the surface. There’s a lot of great resources.
Dr. Leigh Weisz 43:45
That’s super helpful. Well, thank you so much, Kelsey. For your time and expertise. I want to share your website with everyone which is Child Life. therapist.com. And you can also reach Kelsey at kelsey@childlifetherapist.com. You can also buy her workbook, which is here “The Dot Method: an interactive tool to teach kids about cancer” on Amazon. And everyone, please check out more episodes of our podcast, go to copingpartners.com and click on podcasts and articles. And thank you as always, for tuning in. And thank you, Kelsey, for being here.
Kelsey Mora 44:27
Thank you. Thank you for having me. Thank you everyone for listening.
Outro 44:31
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