When the Hospital Stay Ends: Understanding Pediatric Medical Traumatic Stress

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Katie Taylor (1:25): Going home from the hospital is a really important moment that we want to celebrate. And also, the journey of that story is so much longer than that. Because when you're in the hospital, you have a whole care team that is watching out for you. When you go home, it's often just the adults in the house that are the ones watching out for everyone. Well, they're also doing the regular things of running a household, of making dinner and getting kids back to school if they've been out of school and adjusting for siblings who may have been staying with someone else and who are now kind of activated themselves because they've been away from their family.

Katie Taylor (2:05): So all of those pieces can be just such an incredibly heavy moment.

Unknown Speaker (2:14): I saw it at the handwashing station at the entrance of the NICU. I see it in the playroom during medical play bingo. I see it near the fish tank in the surgery waiting room. There is a powerful unspoken language between two parents who have never met, but know in their deepest soul what the inside of the children's hospital feels like. It is joy and it is grief.

Unknown Speaker (2:36): It is love and it is fear. It is miracles and it is loss. This podcast exists to tell these stories. I'm Katie Taylor, a very proud child life specialist, and it's my honor to be your host of Inside the Children's Hospital. Hello, my friends.

Katie Taylor (2:56): I'm so glad you're here. Welcome back to Inside the Children's Hospital. I'm your host, Katie Taylor. I'm a certified child life specialist, and every week on this podcast, we create a space where families can share what it really looks like to walk through health care with a child. This podcast exists to connect parents to one another because when your child has a medical experience, whether it's a diagnosis, a surgery, or an unexpected hospital stay, it can feel incredibly isolating.

Katie Taylor (3:23): But the truth is there are so many families walking a similar path, and when we hear each other's stories, we often find language, validation, and sometimes even healing in places we didn't expect. Today, you get to meet Jen. Jen is a mom, a systems change leader, and the founder of Alongside Network, an organization working to support families and healthcare teams navigating the emotional impact of pediatric medical experiences. But long before she started Alongside, Jen was a parent sitting in the hospital with her infant son. When he was just seven months old, doctors discovered his airway was dangerously narrow, a condition called congenital subglottic stenosis.

Katie Taylor (4:01): He needed surgery quickly and Jen and her husband found themselves surrounded by an amazing medical team in the pediatric ICU. What they didn't expect was what would happen after they went home. Even though the surgery worked medically, their son struggled deeply in the months that followed, and so did they. And as Jen began searching for answers, she discovered something many families don't know enough the emotional and psychological impact that medical experiences can have on children and their family members. Today, Jen shares that journey from those early days in the hospital to the years it took to understand what her family was experiencing and how that eventually led to create Alongside Network, which is working to address pediatric medical traumatic stress for families and providers alike.

Katie Taylor (4:43): I think what you'll hear in Jen's story is something so many parents recognize, that healing doesn't always end when the procedure or hospitalization is over. Okay, let's get into it. Here's my conversation with Jen. Introduce us to you, Jen, who you are, a little bit about you, what you love, your family, and just so we can get to know you.

Katie Taylor (5:02): Yeah. Thanks, Katie. And thank you for having me here. Just so nice to be on today. So my name is Jen Aspengrin, and I am a mom, a wife, a friend, lots of roles I play.

Katie Taylor (5:16): And one of those is the founder of Alongside Network, which we'll end up talking a little bit more about in a moment.

Katie Taylor (5:22): What did you do before you were in Alongside Network in founding an organization?

Katie Taylor (5:29): Yeah. So I spent twenty years working in systems change work. So really looking at some of the bigger systemic questions and working with folks who we call social entrepreneurs who were able to sort of see, you know, kind of had a vantage point from which they could see a larger systemic change that they could propel forward to alleviate some level of human suffering. So

Unknown Speaker (5:56): Wow.

Katie Taylor (5:57): Did a lot of work supporting folks doing systems change work around the world. And that that's sort of the professional framework that I I bring. So that's been a real gift in my life to be able to sort of see the world in that way, see that see the world in these sort of big systemic ways and think about, like, how do we shift those systems to kind of maximize how we can

Katie Taylor (6:22): improve people's lives. So did you ever I mean, obviously, you didn't know what was gonna happen in your family and personal and health life. But was there a part of you that had ever thought, like, oh, maybe one day I'd like to create and become an entrepreneur and do something?

Katie Taylor (6:39): That that's sort of become my network across my professional life. So it I don't know if I so much imagined, like, I wanna do a thing, but it felt like super normal within the culture of friends and professional context that I had. So it's sort of like when a larger problem sort of lands in your lap, I think that that network of folks and that community supports each other in figuring out what to do with it. That sounds So I think that that was the larger gift is just having this beautiful network of people who I had learned so much from and, you know, could really sort of lean on as I was getting alongside off the ground.

Unknown Speaker (7:21): Wow. Like change makers. Amazing. Yes. Well, walk us back to kind of the beginning of your journey becoming a healthcare parent or a medical parent or dipping your toes into the advocacy that needs to happen with parenting and healthcare?

Katie Taylor (7:39): Yeah. Yeah. So when my youngest son was seven months old, He started crawling at six and a half months old and he sort of started developing. It sounded like croup, like just a squeak that sounded surprising. And we brought him in and they said, if this is croup, it'll follow a really clear trajectory.

Katie Taylor (8:03): We'll know exactly, you'll be over this in three days. And it didn't go away. It kept getting worse. And very quickly we realized he had congenital subglottic stenosis. So his airway, they described it to me as it was the size of a little stir stick and it should have been the size of I remember this so vividly.

Katie Taylor (8:25): They said it should have been the size of a McDonald's straw. So Okay. It was very, very narrow for what he needed, and we moved very quickly into a surgery to repair that.

Unknown Speaker (8:38): Is was he your first child?

Unknown Speaker (8:41): My second.

Unknown Speaker (8:41): Your second. Yeah. And do you have another boy?

Katie Taylor (8:44): That's right. Yeah. We have two boys. So they're old now. They're in high school, but all of this is not.

Unknown Speaker (8:51): Yeah. Have you ever been able to drink out of a straw since then without that, like.

Katie Taylor (8:58): Right. Yeah. It is funny that, like, the metaphors that get used in those moments and just how they stick with you your whole life. You know? Like, I think those moments are so raw and so tender and just the language that gets used in those moments is so vivid and sticks with you forever.

Katie Taylor (9:18): Yeah.

Katie Taylor (9:19): Yeah. And also what I noticed from a lot of parents too is remembering, like, down to the day to the hour to even, like, what the reading on the the monitor was, like, how specific you can remember those details. Whereas, like, it's like, what did I do yesterday? But those

Unknown Speaker (9:36): Oh, yeah.

Unknown Speaker (9:36): Stick with you.

Katie Taylor (9:37): Right, right, right. That's exactly right. Yeah. Very vivid for sure. So, yeah, my son had a very sudden surgery, you know, left unaided, it would have meant he was a kid with a trach for his whole life.

Katie Taylor (9:57): Prior to that medical innovation, it would have meant he hadn't survived. So there were a lot of miracles that existed around that experience. And we had tremendous care, felt very confident in the experiences that we have and the doctors that cared for us and the nurses that cared for us and the child life specialists who cared for us, you know, just all of the folks, the respiratory therapists, just this enormous team that surrounded us in those moments. You know, certainly some of the most vulnerable moments of our lives, my husband and I and our son, and, you know, just felt so impressed by the extent to which folks sort of knew what they were doing and were able to step in and do that work that they were so amazing at and, really saved his life. It was an incredible experience to go through and also, of course, very heartbreaking.

Unknown Speaker (10:53): Yeah. Right. And it's so interesting, right, to be so grateful and thankful that these people exist, but the fact that you know they exist isn't so fun to have have know.

Unknown Speaker (11:04): Right, right. Yeah. Do you

Katie Taylor (11:05): remember any specific things? And you mentioned confidence a little bit, but anything that the care team did or a story or just something that really stuck out to you is like, oh, I can completely trust this team. And sure you wanna advocate and and be aware of what's happening, but that you really felt supported. What do you think that was?

Katie Taylor (11:28): Yeah. I mean, you know, I think there was just an ex a a level to which folks were sort of like, listen. We're here every day. We know exactly what we're doing. We we care for each other.

Katie Taylor (11:41): We care for your child and we care for you. I remember very vividly, you know, we we stayed over in the hospital with him. He had to be intubated and, you know, sedated for a week after his surgery so that he wouldn't move, and his airway could begin to heal. And, my husband and I hadn't left the room. You know, we'd been staying in the room, which of course, you know, everyone tells you like all of the things about putting on your oxygen mask first and, you know, get out and do all And, these you know, that felt sort of impossible in the moment.

Katie Taylor (12:17): And, you know, we got out a couple of times for, like, walk around the block, we really And hadn't one night, you know, a social worker teamed up with our PICU nurse, and they were like, listen. We got you a room in the Ronald McDonald House. You're four floors away. Go and sleep hard. And, you know, tomorrow he's being extubated.

Katie Taylor (12:41): Like, this will be a big day. We want you to sleep hard tonight. And it it just felt like a gift. Like, were like, oh, I don't know. He's not he's like, he's barely even stayed with grandparents at this point.

Katie Taylor (12:51): Like, was so little. You know? And they were like, we're better than grandparents. We know what we're doing. We we we have been you know, we have amazing grandparents.

Katie Taylor (12:59): But, you know, they were like, this is what we do all day. We we will be so careful with him and we will be here with him every minute and you will be four floors away. If we need you, we will come and get you. And, you know, just sort of instilling that level of care and confidence and really sort of seeing us in those moments felt felt so important.

Katie Taylor (13:22): Yeah. The million dollar question, were you able to sleep?

Unknown Speaker (13:27): To be honest, yes. There was no there was no negotiation around that.

Unknown Speaker (13:34): I think it's just a gauche and just took Yeah. Yeah. Yeah. So I wanna know how he was extubated. How did that go?

Katie Taylor (13:42): And and what has your life looked like since then?

Katie Taylor (13:46): Yeah. So the extubation didn't go as planned. I think maybe it never does or rarely does. We had a really rough few days after that and then stayed in the hospital for a while longer. You know, one of the most surprising things about our experience happened when we got home.

Katie Taylor (14:07): So we had this amazing care team when we were in the hospital. We had folks who knew what they were doing. We took him home and we didn't know what to expect. We expected that we would go back for medical appointments. We kind of knew what was expected of us in terms of, you know, we were doing a wean.

Katie Taylor (14:28): Like, there were sort of all of these pieces, medically speaking, that we were teaming up with the care team to do at home. And what we didn't realize was the emotional toll that it would take on him even as an infant and that it would take on us. So we brought him home and he truly scream cried for nine months straight. So he cried day and night and we could not figure out how to help him. And, you know, to the point where we thought, did you leave something sharp in him?

Katie Taylor (15:08): Like he is in pain, he is suffering and we don't know how to help him through that. So we kept bringing him back to the surgeon, brought him back many times to our pediatrician, wound up in the emergency department in the middle of the night several times. Like he's got an ear infection maybe. Like what could this be that he is so, so unhappy? And, you know, everyone just really kept telling us, he looks great.

Katie Taylor (15:39): He's doing great. And this is really what we would expect. And physically, that was true. He really the surgery had worked. His airway was growing.

Katie Taylor (15:50): He was growing. All of these physical pieces were going exactly as we had talked about, and that was a gift. And also, there was sort of this whole other piece that folks just hadn't been trained on and didn't know what to tell us when we kind of kept asking about this. And eventually our pediatrician said to us, you know, I wonder if this is like a PTSD kind of thing. And she was right.

Katie Taylor (16:20): And also just hadn't been trained on what to do with a family presenting in her office with that question. So it honestly took us many more years until we found the right support for him and for our family to kind of understand what had happened and and what to do about it, you know, kind of how to how to sort of repave some of those pathways and kind of process what had happened. And that felt like way too long. So he was seven when we finally figured that out. And like I said, he was seven months old when he had that surgery.

Katie Taylor (16:56): So it was a very long path for us to get there. And throughout that time, I just kept kind of poking around and trying to understand, you know, what happened? Like, what what is this? You know, did we fall through the cracks? Is this a larger systemic issue?

Katie Taylor (17:15): What does this look like for families that don't look like mine? You know, our family's a white English speaking as our native language family that is comfortable going toe to toe with doctors. You know, what does that look like for other folks that don't look like us? And came to find that there were twenty years of research on the problem. So it's called pediatric medical traumatic stress.

Katie Taylor (17:40): You as a child life specialist, I know about this probably more than most. And I also saw that and part of finding that research was also finding that this impacts up to eighty percent of families who have a child who has a you know, life altering medical experience.

Unknown Speaker (18:07): It's a

Katie Taylor (18:07): high number. Yeah. So, I mean, it means that we can really assume it's virtually everyone. Right? Like, we can assume that many more people than not are having this experience.

Katie Taylor (18:20): And that means that we wanna put systems in place that are responding to that. When we see that, you know, it's like nearly ubiquitous across every one situation, they're coming home with this emotional toll and not having the tools, not having the heads up and then not having the tools once they get there to know kind of how to cope with that And not having the community as well.

Unknown Speaker (18:47): I

Katie Taylor (18:47): think many of the conversations I've had then in the last several years have been parents sort of saying like, I thought there was something wrong with me that I couldn't just move through this quickly and sort of get my kid back into third grade. Yeah. I think COVID was helpful in a sort of backward way that we wouldn't want to learn. But there was more conversation around post ICU syndrome syndrome or the ways that people were sort of like, I spent three months on a ventilator and I I can't go home and go back to work now. Like I'm not the same as I was.

Katie Taylor (19:24): And then we try to think about like, let's try to put that in a four year old's body, you know, or let's try to put that in a teenager's body. And those same things ring true for for younger people as well. And so as I was digging around, I also found that there were a handful of incredible solutions that had grown up around this problem across the world but had rarely spread beyond the researchers who had developed them. So started alongside network with the idea of kind of bringing all of those solutions into one place and putting families at the center of question so that families are the ones kind of navigating us forward and helping us understand, you know, what do you wish your provider knew in these moments? What do you wish you knew before you had this experience?

Katie Taylor (20:18): How about before you went home? How about three months after you went home? You know, really sort of helping to guide the organization through so that we're responding to family needs in the best ways we can. And then also expanding that to think about provider needs as well.

Katie Taylor (20:40): I have so many questions and thoughts. One is, can you talk about what the research says on what symptoms of this pediatric medical stress looks like in kids? You talked a little bit about your son scream crying and I just kind of see the layers, right, that form after that initial experience. What what else do researchers say they see in these kids? And when should parents kinda be putting an antenna up to say, hey.

Katie Taylor (21:11): We we may need more help.

Katie Taylor (21:13): Yeah. Yeah. That's a great question. I mean, I think I also just wanna make the point that it's not just the kids who are impacted. So it's looking across a family, its siblings, its parents and caregivers.

Katie Taylor (21:28): Really, the research supports the fact that the whole family is impacted. In fact, there's research that sort of shows mothers in particular often have a level of traumatic stress that can be up to 20% higher than the child themselves who was impacted or in the hospital.

Unknown Speaker (21:45): Oh, I believe that so much. I know. I feel like

Katie Taylor (21:48): every every mother is like, uh-huh. Yep. Like, I

Katie Taylor (21:52): I mean, I feel like it's, like, the reason we have a year long waiting list for this podcast is there are stories to be shared about what that parent experience is like? And for other parents who are, like, in the depths of despair to say, like, I've been there too. And I you're I I recognize that that's where you are.

Katie Taylor (22:12): Yep. Right. Exactly. So, I mean, it can look a lot of different ways. A couple of examples are hyperarousal.

Katie Taylor (22:20): So this is, you know, high anxiety, hyper focus on either what happened or in a parent or caregiver, it might be really holding that child very close, not feeling comfortable, letting them ride their bike or sort of be outside. It can just look like a very elevated activated state. So everything feels a little bit like a crisis. It's hard to move through those crisis moments and then bring it back down. Just sort of means you move on to the next sort of hyper aroused experience.

Katie Taylor (22:55): It can also look like hypo arousal. So, you know, numbness, disassociating, checking out, feeling like you're not really there, overwhelmed. So, you know, just some of those it sounds extreme, but I think it also feels very familiar to a lot of people who've had this experience. But, you know, just you know, it just doesn't feel the same as it did before. And and you notice that in yourself or in your child.

Katie Taylor (23:28): And and I think part of it is just shifting the expectation. So shifting the idea that, you know, like the going home from the hospital is it's a really important moment that we want to celebrate. And also, the journey of that story is so much longer than that. So, yes, we want to see balloons on those days. Yes, we want to get lots of encouraging texts.

Katie Taylor (23:56): And also, you know, we just really think about how do we sort of shift that cultural narrative so that folks keep the meals coming, so that those encouraging texts keep coming. Because when you're in the hospital, you have a whole care team that is watching out for you. And when you go home, you know, it's often just the adults in the house that are the ones watching out for everyone while they're also doing the regular things of running a household, of making dinner and getting kids back to school if they've been out of school and adjusting for siblings who may have been staying with someone else and who are now kind of activated themselves because they've been away from their family. So all of those pieces can be just such an incredibly heavy moment for parents and caregivers. And so just watching for all of these pieces, but also giving a lot of grace to each other and to ourselves as we see all of these things happening and knowing that it's incredibly normal to have those experiences.

Katie Taylor (24:59): I have two questions I wanna say before I forget.

Unknown Speaker (25:02): Yes. Please.

Katie Taylor (25:03): One is and I think you're talking about that a little bit now is the mitigation of that stress now. And you talked a lot about community support, recognition, validation. And I know alongside is doing a lot to mitigate that. That's my first question. And my second one is, what does this look like for pediatric outcomes when more people are aware and the stress is mitigated?

Katie Taylor (25:30): What does it do for our our health care system as a whole?

Unknown Speaker (25:34): Mhmm. Mhmm.

Katie Taylor (25:35): Like, I'm thinking about a a parent at that three month checkup that has been given and supported during those three months. Mhmm. And what is that doctor's office visit like, that follow-up appointment like versus a parent who hasn't been supported or a child who hasn't been supported in these ways. I can just imagine the conversations are more productive. The parent is more present.

Unknown Speaker (25:58): There's less ER midnight, you know, it's not that saying that that was what was happening with you, but it's like you feel more equipped, more empowered, more engaged with what's happening and I just it's I feel like it's the answer. The answer is the part. Right?

Katie Taylor (26:16): Well, as you know, I agree.

Unknown Speaker (26:19): We've talked at length.

Katie Taylor (26:24): You know, that's exactly right. Like, so much of what this can look like is not only, you know, a calmer heartbeat, but it can also look like from the from the medical standpoint, it can look like compliance. It can look like the ability to separate our emotions from our medical treatment and be able to articulate what's happening medically without kind of coming, you know, essentially to, you know, a place that is not equipped to handle the emotional needs, but then asking that question of, I don't wanna say the wrong people because I think our thought is to equip those providers, really ensuring that providers have some of those answers. And also recognizing they're doing a lot. Are a lot of pieces to their job.

Katie Taylor (27:16): Grateful for the very physical pieces that they do. And also we see that higher levels of trust, a larger ability to kind of meet those emotional needs in the moment, which doesn't necessarily mean a psychology hour. You know, it can really just mean helping someone feel heard in those moments and then sharing a resource or sharing a story of another parent that they've seen to kind of normalize that experience So, it doesn't feel quite so overwhelming to that parent or that child in that moment. You know, a lot of our goal is to equip providers to not only support patient families, but also to support each other and themselves with greater coping skills leading to spaces that are sort of setting the conditions for resiliency in ways that they might not be doing right now. So we know that you know, working in a PICU or a NICU or cardiovascular intensive care, you know, these are incredibly difficult jobs.

Katie Taylor (28:31): You know, everyone listening knows that. And also, you know, we're not solving for all of the pieces that a nurse might experience in that role. But what we do wanna do is if you're I'm not a big fan of war metaphors, but I have to think of a new one. But, you know, when we're sending folks into war, we at least give them the armor that they need to be able to go through that experience. We give them the tools that they need to protect themselves.

Katie Taylor (29:01): And right now, I think there's a lot more that could be done to be supporting providers in those moments so that we're normalizing language, we're normalizing ways of caring for each other, ways of regulating. I worked with a team of pediatricians last year and, you know, they were sort of saying, you know, I might go from one room where a child is coding, and I'm late getting into the next room. And so by the time I arrive in that next room, I am so elevated because not only have I just had this incredibly intense experience, but I know this family's frustrated with me. I'm starting off on the wrong foot.

Unknown Speaker (29:46): Right.

Katie Taylor (29:46): And and I don't know how to move through that moment and take thirty seconds in the bathroom and sort of do some breathing exercises or whatever it might need to be to sort of bring my own heartbeat down so that I can step into that moment as the provider that I want to be for that family because I want to give every family my best self and the conditions I'm up against don't always allow for that.

Katie Taylor (30:14): Yeah. That's so powerful. So it seems like alongside is looking at, like you said, the bigger system to impact, and those are the people who are with families who are experiencing this every single day.

Katie Taylor (30:31): That's right. That's right. So, I mean, I another group of pediatricians I worked with, this was clinician. So someone working in clinic, a pediatrician, and she said, oh, I have a protocol for when a parent starts crying in my office. And, you know, it's like the whole the whole Zoom call of us was like, oh, this is amazing.

Katie Taylor (30:53): Like, what are what are you saying? And she said, oh, I you know, when I deliver a hard diagnosis, You know, now I've put this protocol in place and I just build it in and that has helped me so much. And, you know, she was talking about how this protocol has sort of like helped across years of working with these same patients. The parents will kind of refer back to, I remember what happened at the beginning. And she was talking about kind of just sort of kept saying this protocol, this protocol.

Katie Taylor (31:24): So finally, someone asked like, oh, this is so helpful. What is the protocol? And she said, oh, I call them a couple days later and ask them how they're doing. And that was the protocol. And it was you know?

Katie Taylor (31:39): And part of part of why she was saying protocol, she sort of figured out how insurance could pay for it and kind of how to follow-up and set a half hour meeting and all of these pieces. But the extent to which that builds trust with those families and those families feel seen and cared for, and like this person is looking out for me beyond my child's heart condition or beyond all of these other pieces that are a part of my child's physical body, but they are looking at our whole family and recognizing how hard it is to hear the news that this doctor was delivering. And it was so beautiful to hear her talk about these connections that she then had, you know, over a lifetime of helping raise this child and make sure that their physical needs were taken care of. It just immediately built this deep trust between this pediatrician and the very often moms that she was speaking with. And it felt so simple, right?

Katie Taylor (32:40): Like this is I

Katie Taylor (32:41): know. Was like, the word protocol denotes that it's gonna be a really complex thing and it it it's not necessarily. And then

Unknown Speaker (32:49): Right. I think

Katie Taylor (32:50): so much about what the pediatrician gets back in return, you know Right. As well. Like the and that's kind of your whole point too is supporting the people who are in the room. It's like this two way street where when I scratch your back, I'm actually scratching mine too.

Katie Taylor (33:05): That's right. That's right. Like, know, we we work with a congenital cardiologist who works with adults who have congenital heart defects. And she talked to me recently about you know, I I used to feel so frustrated when patients would come, and I'm like, don't you care about your health? I haven't seen you for five years.

Katie Taylor (33:31): You're supposed to come once a year. And she said, I felt like I cared more about their health than they did. Like, why aren't they coming? Why is this happening? And, you know, through some training with alongside and, like, doing doing work together, it's been really beautiful to hear her talk about, you know, now I start my patient conversations with, I'm so sorry you're here.

Katie Taylor (33:55): Yeah. Sure. There are so many more places you'd rather be, and I'm so sorry that all of these things happened to you when you were little that probably make it even harder to come here. So how can you and I work together to make sure that you as an adult are coming every year and we can partner together on this so that, you're getting the care you need and also the support you need, to ensure that your your health is the best it can be.

Katie Taylor (34:22): I just timed that. That was like less than twenty seconds. And that's what it takes to build trust and build rapport. You know, often child life specialists, we get asked, like, how did you get them to do that? Or how do they trust you?

Katie Taylor (34:36): Or how and it's like, we spend the first thirty seconds to five minutes playing.

Unknown Speaker (34:42): Yeah. Talking Right.

Katie Taylor (34:43): And chatting. And it saves us so much time in the long run and helps with compliance and helps the family feel supported and gives some autonomy. Like, there's just no downside. And I know in a world where time is limited, especially on the provider side, it doesn't have to be five minutes. It can be twenty seconds.

Unknown Speaker (35:06): That statement is proof of that.

Katie Taylor (35:08): That's right. Yeah, yeah. That's, know, like this whole concept of provider confidence and kind of stretching the confidence to, and understand like, again, these are folks who are the top 1% of people who are literally saving lives on the daily.

Unknown Speaker (35:26): Amazing. Yeah.

Katie Taylor (35:28): Them, confidence means something different than it might mean to It's like confidence means I can take your narrow airway and give you the McDonald's straw size airway that you need to have to grow, and I can have confidence sending you home that you will survive and you will thrive in your life. That that is incredible. And also, like, this piece of the emotional confidence that it takes to sit with a family through hard moments without necessarily feeling like you need to call in child life or psych or social work, but instead just pausing to say, yeah, like parent to parent, I would really have a hard time in this moment and I understand your tears. Understand why this is hard.

Katie Taylor (36:20): Wow. Well, amazing work. I'm so grateful

Unknown Speaker (36:24): You're welcome.

Katie Taylor (36:25): For the work of Alongside and your vision for what the world can be like. Where can people go learn more about Alongside and and find out about all the amazing work you're doing? And I know selfishly, we're gonna have you in the child life circle, you'll come talk to a child life specialist and very excited.

Katie Taylor (36:42): I'm really excited for that. Yeah. Yeah. So our website is just alongside network.org. And I also just wanna talk very briefly if I could Of course.

Katie Taylor (36:53): About the work that we do with parents and caregivers. Yes. So that that is has been the core of our work from the very beginning. And that has been grounded in an incredibly well researched curriculum called Take a Breath that came out of the Royal Children's Hospital in Melbourne, Australia. And these smart, incredible researchers shared their work with us, and now we use it in The US.

Katie Taylor (37:22): And what it is, it's six weeks. This is for parents and caregivers specifically, knowing that if the adults in the house are doing well, there's a much higher likelihood that the whole family will be doing well. So it's a six week intervention. They're we call them well-being groups. It's an hour and a half once a week.

Katie Taylor (37:45): It's on Zoom by design, so we don't have to leave our kids to do it. And it's really focused on three different things. So focused on first, validation of experience. So some of those pieces that we talked about earlier about, you know, I'm not the only one here. I see myself in your story.

Katie Taylor (38:08): I see the ways that this feels starting to feel normal that this would be my reaction. Two is really focused on community. So, you know, this is where the magic happens in those groups is time when folks are together and able to really process together and share their stories and feel connections to each other. I love your introduction to this podcast where that's exactly what it reminds me of. And then the third is really focused on coping skills.

Katie Taylor (38:39): So this is an acceptance commitment therapy curriculum. It's not a traditional support group. It's very much focused on building those coping skills so that we can move toward thriving and resilience. And that those groups have been, I don't know, such a gift for us to be able to run. We see that parents love them.

Katie Taylor (39:01): They really work. You know, we have a bunch of follow-up supports for folks who've gone through those groups. But very, very often, folks are kind of referring back to the skills that they learned in those groups. So all the groups are offered at no cost to families, and we partner with hospitals or with diagnosis communities, all sorts of other spaces to deliver those groups in those ways. So, it's just something I would love folks to know about and invite them to find them on our website and sign up as well.

Unknown Speaker (39:36): Oh, what an amazing gift you're offering to so many. I feel like any person who's doing podcasts could could

Katie Taylor (39:43): be. It's a gift to be able to do it. You know? I think so much of what we know, you know this very well, you know, the the gift is in meaning making. Right?

Katie Taylor (39:52): Like, the the ways that, you know, alongside is also just sort of built lots of pathways for parents and caregivers to get involved and contribute to ensuring that no other parent goes through the same sorts of things that we might have experienced. And that meaning making just adds an additional layer of healing into the experience and it feels, yeah, just so lucky to be able to do it. So, thank you.

Katie Taylor (40:18): Yeah. Thank you. Well, I appreciate you looking at from, you know, approaches, the provider and also the people experiencing. And I feel like it's less likely for people to fall through the gaps if you're able to see both sides. So, thank you.

Katie Taylor (40:34): Thank you. For those of you who are joining us today, I am not a doctor. I'm not a therapist. I am a child life specialist and the suggestions and tips and resources that I talk about with parents on this podcast may be great for you and they may not be right for you. So the most important person you can talk to about getting support is your care team, your doctor who knows your story and your child's story.

Katie Taylor (41:00): So regardless of maybe what I mentioned or what other families mentioned here, we're not licensed therapists. We're not doctors. We're having a conversation about what the parenting journey has been like. So please keep that in mind as you listen today.

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