Maggie McKay (Host): Welcome to the Peds Pod by Lebonheur Children's Hospital. I'm your host, Maggie McKay. When your kids are away from home and they have a medical issue, how do you teach them to advocate for medical needs when you're not there? Today, we'll find out with Kerri Crawford, Child Life Specialist. Thank you for joining us, Kerri.

Kerri Crawford: Thanks Maggie. Thanks for having me.

Host: Absolutely. This is such an important topic. I can't wait to learn more about it. So, let's just start with what is a child life specialist? What do you do?

Kerri Crawford: Yeah. So, child life specialists work with patients and families usually in the healthcare setting to reduce stress and anxiety and promote positive coping within their healthcare experience. So, that's what I do here at Lebonheur.

Host: That's great. What are some of the most common medical needs children might have to advocate for when they're away from home?

Kerri Crawford: I think there are a lot of common diagnoses people think of when we think about medical needs, ones like diabetes, asthma, allergies. But truly, any medical diagnosis, whether it's acute or chronic, can come with unique needs that children may need to advocate for. And so, I think that's why this type of conversation is so important to start as soon as possible and to have it early and ongoing.

Host: I can't imagine having a child far away and not being there to help them. So from your experience, what are the emotional or psychological challenges that kids face when they're trying to speak up about their needs?

Kerri Crawford: So many. So, there are so many reasons why a child might feel worried or uncomfortable speaking up for themselves. And I think something that's important to note is that the reasons can vary from child to child. So, what might be concerning for one child might not be a big deal for the other, but they might have something that really is concerning for them.

So, I think as trusted adults, the most important thing we can do is to ask kids how they feel about speaking up for themselves. So, not only some of the things we'll talk about more, I'm sure during our time together, but also spending time asking them how they feel about these things we're practicing or these things we're talking about, and really helping them find their own way to express how they're feeling and validating their feelings.

Some common ones that I have heard from kids are concerns that they might be dismissed by an adult they're talking to, so an adult saying, you know, "You're fine. Shake it off, you'll be okay," or even being judged or made fun of by a peer. So, the idea that they might not be taken seriously or might be different than others can be a big barrier, and I think it's also important to talk to them about how we can't promise those things won't happen, but we can equip them with the coping tools and the advocacy skills to work through those tough moments if and when they do happen.

Host: And at what age do you typically start teaching kids how to express and advocate for their health needs?

Kerri Crawford: It sounds silly. But you can start the conversation really as soon as a child is able to point to a cut or scrape on their body or say the word "ow." I think it starts with modeling. So, just narrating what's happening. "So, you hurt yourself. Let's get a bandaid and clean it up." Talking through those things because kids, even very young toddlers, they're sponges. They're learning from everything that we do. So just narrating for them, talking them through next steps and what it looks like to take care of ourselves when we need help. And so, even as very young toddlers in the hospital, we start by offering narration, modeling for them, what it looks like. And even as young as like two and three, offering them really simple, realistic choices and following their lead so they feel like they have some control over the situation. That can feel hard sometimes.

Host: So, what are some age-appropriate ways to start teaching young kids to speak up about their medical needs? Are there tools or resources that you use to help kids build these advocacy skills?

Kerri Crawford: All of the above. And I think the foundation of self-advocacy skills comes from creating an emotionally safe space for kids to practice what it would be like for them to speak up so that when they're in those moments, it's sort of familiar to them. They've tried it before, they know what to say. So, that involves like us as caregivers or as the medical team, making sure we are coming in without expectations, allowing them to go at their own pace and practicing these advocacy skills. We trust caregivers to know them best. So, the tools that we offer would be based on what the caregiver thinks would be most successful for them, or even the child choosing what would be most successful for them.

So, that can look like a short script that they can use and try to say out loud; a visual aid, which I'll talk more about what some of those could be; and then, even roleplaying scenarios. "You practice your script, I'm going to practice responding, and then we'll go from there." But I think just giving them the space to not have expectations, not expecting them to be perfect at it, but having that practice so that when the time comes, like in your example, they won't feel as scared of what the response might be because they've practiced saying the things out loud before or doing the thing that they're going to do before. And then, as their confidence grows, we can practice some of the challenges that we discuss. So if you feel really comfortable with your script, then let's start talking about what if someone doesn't take you seriously, or what if someone does make fun of you, like a peer? What do we do then?

We talked about scripting, I think to just following the child's lead. So, they know themselves best, their caregivers know them best. So if they're a child that they think is too challenging to speak up, you know, giving them a secret signal that we can communicate to their teachers or their counselors, or whomever they're going to be with. Maybe they tug on their ear to let them know that they're not feeling well. Maybe they touch their nose. In our diabetes clinic at Lebonheur, we have a child life specialist who works with kids to make a personalized key chain with their name and their information on it so that they can choose what it looks like, what it has on it, but it helps be sort of a visual cue to the people around them that they do have a medical condition that might need some attention at some point.

Host: That's really smart. And you touched on this one a little bit. What advice do you have for preparing children to communicate their needs to teachers, school nurses or camp counselors, for example?

Kerri Crawford: So, calling back to emotional safety, I think that is our primary work as child life specialists. We focus on our patient's emotional wellbeing and work with them to build trust and promote resiliency. And I think creating that environment so that they can practice expressing themselves, so that when they get into the real world, they know what we already talked about. They're familiar with it, they've done it before. But really, being ready as adults to listen without judgment, ready to respond with compassion and patients and trying not to correct them. So, trying not to tell them that the way they advocated for themself is wrong or they need to change it, trying to promote autonomy and build confidence through practice.

Host: So, you mentioned, Kerri, sometimes kids might be afraid that they'll be ignored or misunderstood. How do you advise them to get past that? If they want to try to speak up and somebody ignores them. How can caregivers support kids who have had a bad experience trying to advocate for themselves?

Kerri Crawford: Yeah, I think that's really hard. And I'm going to sound like a broken record, but sitting with them in the feeling, like that is a hard feeling, how did it make you feel when that happened? I don't think we can get to moving forward or problem solving before we can work through the feelings that come with that.

So before anything else, I would sit with them in the feeling. And then, once we talk through the feeling, we can talk about ways to cope with that feeling. So, validating how it felt, validating that those things are really hard. And then, talk about ways we cope through that and also talk about what we do next time if that were to happen.

I think a lot of times we as adults want to fix things for kids, and sometimes we have to go against that instinct and instead we have to validate and say, "That feels really hard," and work with them to come up with a different plan moving forward, talking about what went wrong, talking about how the person responded to them, and then talking about how being brave means we can do things scared, and it's okay to feel scared when we do these things.

And then, just talking through a plan for the next time because once bitten, twice shy. It would not be uncommon for a kid who had that experience to then feel even more nervous the second time around. And so, equipping them with those coping tools of how do we cope with things that feel really scary or really hard?

Host: Yeah. On the other end of the spectrum, parents who maybe-- like once my son's best friend was over and he's like part of the family and his tongue was all red and it turns out it was from candy. But he was so scared. He was crying. I felt so bad. I came in, I'm like, "Are you okay?" And he's like, "I think I'm dying but I didn't want to tell you--" because we were out town-- and he said, "I want my mom to come and pick me up," but they were like two hours away. So, I said, "Well, you know what, let's call her and see. Maybe it was the candy." So as a parent, you know, with either your kids or their friends, how do you make the child feel like, "It's okay, don't worry about it"?

Kerri Crawford: I think just what you described, honestly, just kind of sitting with him in that, and like it seems like you may have known it was candy, but letting him have a moment to be like, "Okay, this is something different and new for you. Let's see what happens." Allowing him to advocate for himself. It doesn't sound like you dismissed him out of turn and said, "No, it was a candy. You're fine." So just being like, "Hey, I see that this is hard for you." I think on the front end, having caregiver to caregiver conversations about do they have any medical needs? What do those look like, what do those sound like? What do I need to be looking out for? So that the person that you're leaving your child with has the baseline understanding. And then, just doing exactly what you did. Like, "Hey, let's call your parents. Let's see what they have to say." Because at the end of the day, the people who know their kid best is going to be the parent or the caregiver. So, I think your example was a wonderful example to handle like that

Host: He was so sad. I felt so bad for him. How do you adapt your approach for children with communication challenges or developmental differences?

Kerri Crawford: I think just meeting them where they are. So even if they don't communicate through speaking, if they're non-speaking, every child, every person communicates in some way. And so, figuring out do they have a communication device that they use? Do they sign? What are the ways that they do communicate? Talking to their parents about developmentally, where are they? What do you think we can do to accommodate and support their needs?

And so, I think just once again, getting to know the child and the adult and also equipping them with a plan. So they might be the people that say, "We're not really sure how to address this." So, learning more about them and then coming up with a plan together again so that everyone feels comfortable with the plan, especially the child who will be the person honestly kind of responsible for the plan when their parents or caregivers aren't around. And so, just sort of adapting our approach and honoring where the child is and what feels doable and comfortable to them.

Host: Well, Kerri, this has been so informative and helpful. Thank you so much for sharing your expertise. We really appreciate it.

Kerri Crawford: Yeah. Thank you. This was great.

Host: Again, that's Kerri Crawford. To find out more, please visit lebonheur.org. And if you found this podcast helpful, please share it on your social channels and check out our entire podcast library. For topics of interest to you, I'm Maggie McKay. Thanks for listening to the Peds Pod from Lebonheur Children's Hospital.