Empowering Resilient Children: Harnessing Snyder's Hope Theory for Goal-Setting in Pediatric Care

Discover the transformative power of Snyder's Hope Theory as it intertwines with the aspirations and resilience of children facing medical challenges. Ashlyn Thompson, joined by the compassionate child life specialist Kimberly Flood, unravels how setting realistic goals can fortify a young one's emotional landscape. Throughout our heartfelt discussions, we shed light on the delicate dance between parenting and advocating, all while fostering independence and self-esteem in our brave little warriors.

Taking a deep dive into the nuances of goal-setting, we connect with families from various walks of life, learning how they tailor their approach to celebrate each small triumph. Kim Flood brings invaluable insights from her practice, Bridge to Bravery, illustrating the profound impact of play in reaching developmental milestones and the art of being your child's unwavering champion. We don't just talk about challenges; we celebrate the joyous moments that bond siblings, ensuring every family member feels cherished despite the demands of medical care. 

As we round off the week, I warmly invite you to lean on the strength of our shared experiences through the Charlotte Hope Foundation. Here, your stories of perseverance and hope resonate, reminding us all that we are part of a larger, supportive community. Subscribe and join us on this journey, where every parent is equipped to raise resilient children amidst adversity, and every child is encouraged to reach for the stars.

Get your copy of She is Charlotte: A Mother’s Physical, Emotional, and Spiritual Journey with Her Child with Medical Complexities by Emily K Whiting on Amazon

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Transcript

Speaker 1: 0:13

Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while, empowered by hope, is here for you. Though we wish you didn't know this heartache, we're so glad you found us Together. We can walk this journey in hope.

Speaker 2: 0:36

Hello and welcome to Empowered by Hope podcast. This is your host, ashlyn Thompson, and my co-host, emily, is engaged in some homeschooling practices. This morning that could not be avoided. Once again, emily is amazing with being able to juggle way more things than I can. My kid is off at regular school being attended to by someone else, but I had the opportunity to grab one of my favorite guests that we've had, ms Kimberly Flood, who, hopefully you remember, is a child life specialist and owns her own really cool, unique company called Bridge to Bravery.

Speaker 2: 1:19

And the reason I wanted to have you on here, kim, is because we have been talking about Snyder's Hope Theory and why it is so relevant to the world of raising a child with any type of medical needs. And truly, snyder's Hope Theory can be just applied to life in a lot of ways, but understanding the ins and outs of it and the applications, I think really can help us, as parents, think about how to manage our roles as parent, caregiver and advocate, because those are three individual roles, really, that we are oftentimes juggling all at the same time, and so what we will be talking about today is the first part of Snyder's Hope Theory, which is establishing goals, and goals that are obtainable, that are realistic, and goals that make sense for your child and your family. Where you are now, there's nothing wrong with setting long-range goals, but what we find is it's really easy to think in terms of big picture overall, our pie in the sky ultimate goal of I want my child healed, I want my child totally healthy, I want these problems behind my child, and there are a lot of circumstances in life where that's just truly not realistic. And so, rather than those goals giving us hope, they can really be very defeating and that does nothing for us but, more importantly, to us as parents, that doesn't do anything to help our child. Right, and that's what we're in this for is we have to focus on what is best for them, not only from a physical health perspective, but they're a mental health, they're emotional health, the way that they view themselves as a person. And so I'm so excited to dive in with you, kim, and start talking about some unique ways to look at goals for parents because, like I said I just mentioned, a lot of times we zero in on the medical related goals, right, the physical health goals that you can measure, but when we had conversations with you, you opened me up to the idea of setting goals for Emory that honestly felt like more normal quotation marks around, normal parenting goals for raising a child into their own you know future self-person, someday, her own individual. And it was really empowering for me and uplifting to remember there are lots of goals that I can set for Emory, that we can set for our family, that we actually have some control over helping make happen. You know, I cannot control whether or not Emory is going to end up becoming continent for sure someday she will or she won't, and nobody will know until it happens. And you know, that is something that used to really bog me down. But then, you know, working through this hope theory, talking with friends, connecting with you know professionals like Kimberly, I start to realize that, no, I can set smaller goals that have a bigger impact truthfully, on her life, which are how can we start establishing language that she's comfortable using to talk about herself? How can we start empowering her to use her voice when she's around doctors and nurses so she doesn't feel intimidated? What amazing skills to start working on. And so those are just a couple examples.

Speaker 2: 5:15

But real quick, let's bring you into the conversation, kim. Hi, I'm so happy to have you here and we were laughing. Everybody. We have our podcast faces on right now. Kim always looks beautiful. I've got my baseball cap on, though, to hide some of that face that has not been properly washed or makeup removed from yesterday, but you are supporting a Charlotte's Hope sweatshirt and I love seeing it, so thank you. How have you been? How are you doing?

Speaker 3: 5:43

Hi Ashlyn, thank you so much for having me. I am good I am supporting my Charlotte's Hope. My new favorite sweatshirt Very comfortable On the side note.

Speaker 2: 5:53

I'm good.

Speaker 3: 5:55

I'm really excited to be here and talk about goals and parenting and all the things. So, as Ashlyn mentioned, I'm a child life specialist, so I have my own private practice in the Columbus Ohio area. So supporting kids with their coping needs outside of the hospital setting a child life specialist you can find in the hospital setting to help with the psychosocial goals for your kids coping or understanding procedures or a new diagnosis. So goals is up my alley and I can tell you as a mom myself, it is so hard sometimes to set goals and stay on track and to focus on those little ladder goals that you were talking about, the smaller ones, because sometimes I think it's so easy to go for the big goals that can feel overwhelming. And so I love this idea of goals setting in a smaller sense and seeing kids in a different way than what our adult minds tend to think about, what the most important thing for them is. And they have their health goals, which are so important, but then their kid goals and that play for kids, for kids thinking about goal-setting.

Speaker 3: 7:06

You know I see play as hope, you know the theme of hope coming in for kids. That is where they explore and thrive and and so I think that's where they find their control. You had mentioned, you know, that big goal of having continents and that's, you know, that's here. But but that might leave you feeling out of control because you don't know what that end result will be. And so, getting those smaller things where I think we, as people, love have, you know, a semblance of control whether we actually have any control or not, we like to pretend we have control, but I think those smaller goals can give us a little bit of something to grasp onto and I think that's where hope is found in those goals.

Speaker 2: 7:47

That's a great opening. I agree with that and it kind of made me think. I almost think that working through goal-setting when you've entered this life really relates to the idea of learning how to redefine what success is, what okay means, what a good outcome is. I know for a long time my husband and I the only probably more so, me actually, if you're listening husband was the only acceptable outcome was complete natural continents. You know that was the only way I could see her future life being one that was really good and high quality, and I think that was a natural part of probably the grieving process really of realizing that. You know her life's not going to be quote-unquote typical. She's going to have challenges that are out of our heads to help her with. We'll do our best, we'll make the best choices we can with the information we have. But if the only way I define her life as being a good one is her being like every, you know, like the average person to go to the bathroom, well, that's a pretty specific, you know, laser focused definition of a good life and that has nothing to do with self-esteem. It has nothing to do with her. You know depth of friendships that she has and partaking in things she's passionate about, and feeling loved and supported. That's, you know, those are all things that actually start to come into creating a picture of a good life, not how she goes to the bathroom.

Speaker 2: 9:31

And so when I think about that and I start to think about goals, I think that's why we've really latched onto the concept of creating ladders with your goals, which we introduced with our my therapist. I'll have to link that episode where we talked about actually it was an introduction to trauma and stress, but we talked about one of the ways to work through those anxieties is to create ladder goals. So instead of setting, you know, that big, giant goal, let's say you want your child to be able to walk independently, and right now they're not able to get from a you know laying down position into a seated position by themselves yet, but your only goal is for them to walk. Well, if you're on the ground level and you're reaching all the way up to that very, very high goal, there's not, it's not realistic. You literally cannot get to the top of that ladder without any steps in between.

Speaker 2: 10:29

And so creating that ladder where it has almost micro goals, if you would, that is what starts to create momentum. That's what starts to give you things that you can actually really focus on and you can help your child achieve. You can connect with your child more, I feel like through goal setting it's a really great way to bond. And, and last but not least, if you set smaller goals that are more achievable, that's more opportunities for celebration, and that is one of the most important things we can do as a parent, as an advocate, is remember to be our kids biggest cheerleader too.

Speaker 2: 11:08

It's really easy to want to go in there and set all these goals and feel like we've got to come out with our sword drawn and you know we're ready to go into battle and a lot of times you know there are times that that's required and, kim, I'm guessing you've seen plenty of families you know show up at the front lines ready to fight. But it's also just as important to celebrate every victory, no matter how small or big it seems. So, kim, I am curious what is goal setting look like for you as families, just in general? How do you work through that? You?

Speaker 3: 11:43

know that's really interesting. Goal setting looks different for everyone, you know, I think. I think for parents, even goals and I in that medical goal is so important. You know, those treatment goals are up here and, as you said, like there's a part of you know your parent, you're an advocate, you're, you know you're all these extra things, and so sometimes in the hospital setting, the goal might be to figure out a communication style for your goals and how you, you know, I think, for parents, that you remember that your goals for your child are just as valid as medical teams and you know you know your child best. And so I think there's this element of communication and goal setting that's so important. And it's communication with the medical team, it's communication with your child about what's going on with their body. It's communicating how you're going to get through something together. You know, I think so.

Speaker 3: 12:40

I think, when I think of goal setting, sometimes one bigger goal is how do you handle the communication piece of things, because that affects so much of things.

Speaker 3: 12:52

You know, I'm curious, ashlyn, if you found, when you first found yourself in the hospital and you're learning all these things, how you felt like you could communicate with the medical team, because that impacts your coping. That impacts, you know. I know Emory was a baby, so but but her coping, because you know you don't, she might feel your stress and vice versa. So I think, you know, I think sometimes goal setting, communication, and then there's all these little ladder pieces, because there's so much within communication that you need to figure out within the hospital setting that can feel so daunting. You know, as a mom you go from from figuring out your household environment and running it. So all of a sudden, like you have this other like chain of command right of your child's care, that you're not just the primary person here to communicate with. There's doctors and nurses and therapists, and you know there's like all these people involved. And so that's a long winded answer, for communication is a really important goal that I that I feel a lot of families struggling with when things feel overwhelming.

Speaker 2: 13:54

I'm so glad that you brought that up because once again, my head was not anywhere near that and hearing you say that, I think what I'm hearing you say is that by making communication with the team, establishing basically a strong foundation of communication pathways, right who you're going to connect with for what, having a clear understanding of that, how you're supposed to communicate with them, I can see how that it's certainly like having a really good game plan established up front Could really lower your stress levels from the start. Because when you think about it especially, you know if you're in the hospital or you have a child with multiple specialists, you're often dealing with a lot of different people. It could be you know you've got your specialist but let's face it, a lot of times there's there's only so much FaceTime actually with them and a lot of communication is going through nurses, assistants. It's going through, you know, sometimes students. You know who are on their rounds and they have to communicate. Is it going through a portal? Is it a phone call, is it a text message, is it? You know there's so many ways that communication takes place and I remember thinking that I would have one nurse and that's who I would communicate through everything.

Speaker 2: 15:16

But I didn't realize all the hoops that my nurses would have to jump through to get anything done. And like I remember requesting a child life specialist that had to go through a nurse and then it ended up being a nurse manager, I believe, who was finding the one to get that rolling. And same thing when I wanted a physical therapist to do an assessment, my doctor didn't think it was necessary because she was just a baby. It was like she hasn't moved for a month. So I think she probably needs to be assessed, you know, but I didn't know how to go about that because I couldn't just reach out to the physical therapist and I was like I'm going to get this in the office. And it didn't create stress. And now that I look back I'm like there probably was some undue stress that kind of clouded our environment for a while.

Speaker 2: 16:02

That had we had a really clear plan up front of this is who you contact for pain management, or your nurse is going to be your point person. And I wanted to have your plan established because what I found was, with all the nurses we went through, it wasn't uncommon that a nurse had to find out who to go to for a problem, right, and if you have a child with something that's rare like Emory surgery, they only did like four or five of those a year. So some of her needs were not common needs or you know struggles that they face. So it took a little bit of searching to figure out who could answer certain problems.

Speaker 2: 16:43

Those were moments that I wasn't exactly at my best, my finest at that point, and I remember just like when to pull my hair out, like what do you mean? You don't know the answers. Why are we having to delay solutions even longer for my child? So I love that as a goal because it almost seems like it could just give you just more confidence as you move forward into whatever challenge you're about to face.

Speaker 3: 17:11

Right, and if you have there's all these little things. I think that go with communication in the hospital. I know we'll get with goal setting with your kids, but I think when you have this team approach and this solid communication, there's just more of a flow. That happens if you have a primary care nursing team, that you have your four group of nurses that are signing up for shifts and have your child every shift that they're on, so that creates a better flow of communication. If there's a family care conference, there's all these different things that you might not know of right away, and if they're not offered or maybe they're offered and the reality is that if you don't have a pen and paper and you're writing stuff down which you don't always, you're not going to remember all the messages that are relayed to you as a parent there's just no way to physically, to mentally, store all of that information and support your child and all these things. And so that is even in my private practice. That is usually always. My first goal is figuring out what communication looks like in the moment. First Because, as a child life specialist, that helps me understand where the child's coming from, and then that's where you get, once you know what they understand or what they don't understand, what they're fearful of, what they're not, what coping skills they have. That's all kind of a communication umbrella with what's going on with them personally, and then that's where you can set those play goals and know what's going on.

Speaker 3: 18:39

Or sometimes with goal setting with that, you don't know the goal until you have the capacity to be able to handle the goal. That makes sense. Some goals evolve when you're ready for them. It's always retrospectively you look back and say, oh, why didn't we think about that? Then, like we spoke about recently with Emery, she has an upcoming ultrasound and she's too, and now you've mentioned that. Now you're ready for her to get some control and understand and cope. That wasn't a realistic goal maybe six months ago or maybe a year ago and now it's a realistic goal that you can put as a priority for her. Play needs to understand the ultrasound now, to cope with it and gain some skills that will help her start to have the language and everything that evolves with what might be a personal goal for her now. I love that. So I think once you get your communication skills down, then you can start to know some of the extra stuff that goes along with that. You've got me thinking.

Speaker 2: 19:48

So what would you recommend? Or I mean, I don't think you can put a time frame on it. Maybe it's just using this conversation as a way to encourage mindfulness and awareness that allow your child to evolve and let those goals evolve. And goals can change just as easily as anything else and maybe a setback happens and you need to readjust your goals. How do you help families, or how can families look at that as a way of, or how can they find encouragement? Do you think, when a child has a setback and goals have to change Because I'm assuming you've experienced that I have what are your encouragement?

Speaker 3: 20:39

I think my encouragement is to not be discouraged. Maybe you had a positive experience your last visit and then this time it just the stars didn't align. Maybe your child was extra tired, maybe you had a procedure that just didn't go well that day. That doesn't mean you can't retrospectively step back and look at what happened and frame things in a different light. So kids are always capable of learning and adapting and changing and growing in their skills, just like adults. Kids sometimes more so because they have less.

Speaker 2: 21:15

They're less jaded. Is that what you're?

Speaker 3: 21:18

saying they can bounce back. But even my own kids, when we've had a hard day and sometimes I wake up like, ooh, ok, that's a hard day, can I reset my mind to make this day a great day. It takes mindfulness on my part to say, ok, I need to reset as a parent. But they wake up in the morning and they're ready to go. The slate is cleared. They can learn and adapt and change and I think with a medical goal.

Speaker 3: 21:47

Say, you had an emergency room visit and you weren't prepared for that emergency room visit. Your child wasn't mentally prepared, it was surprising and they didn't cope well with the IV that they needed right away in the emergency department. That doesn't mean all IVs will go poorly. It just might mean they might need some extra time to play and explore and process and gain a little bit of control back into what was a really hard experience. They might need a minute away from the medical team if you have that luxury where I know we talked about last time to make sure we're going to treatment rooms for procedures and they might need a reminder that their room is a safe space and that the adults around them are mindful of that.

Speaker 3: 22:30

So I think when you have something that feels discouraging, especially in a medical sense, like a procedure goes wrong, that there are always times to play and process and heal. Play for kids is where hope comes. Play is where healing happens. Play is where connection happens with a parent and child after a really stressful situation where sometimes I think there's so much going on your mind is a parent just swirling, but what your child needs is for you to just see them for a second.

Speaker 3: 23:01

And that might just be and that's where sometimes for child life, that was probably some of my most beautiful moments, where, when I noticed a parent and child needed to connect and to be able to step into their room and give them something fun to do or talk about Taylor Swift, do something that was fun and shifted this really heavy moment into something that was lighter, where you can make eye contact with your child again and connect and hug and snuggle or whatever that looks like. So I think you know, summarizing that I think after a child has had a setback in their goals and you know I tend to look at the coping goals, you know. So a setback with a procedure, what they need usually after that is just a time to connect and play and have those kid moments Right and a break from the hospital, if you're afforded that in that moment, you know.

Speaker 2: 23:58

That reminds me of something else that we talked about last time that I think we could discuss as a goal. That's maybe not something that we typically would think about right offhand and that would be working on or setting a goal for your child to be able to self-regulate. You know a little better and I think that comes with these coping mechanisms that you talk about. You know there are things that are just. Maybe there's a treatment that you have to do at home on a regular basis and it is just awful. There's no way around it. You know, making it feel better or less disgusting for the kid, or maybe pain is a difficult part of it. Whatever it may be, and your child gets upset consistently.

Speaker 2: 24:43

Maybe a goal could be you know the amount of time that it takes for your child to regulate after getting upset to work on that, you know, okay, and after you know we would do this.

Speaker 2: 24:56

Maybe a child screams or is really upset for an hour. I know my child has had the capacity to be very upset for a very long time. But maybe working on ways to figure out how you can help your child learn to whether they're self-soothing or you're finding new ways to help soothe them. I think that's something that can make us feel really good is because we hate seeing our children upset right, because one of the hardest things about this reality is seeing your kid hurt. You just don't want to. It's so uncomfortable. It's to me, it's incredibly painful watching my child in pain or be scared, and so I think looking at that as a possible goal to work on is something that can once again, you know, give you a sense of hope that you're doing something to help your child. That's so much what we're desperate for right when we're setting goals, because we want things to be better for our child.

Speaker 3: 25:50

I'm curious what are some goals that you often set or don't have to be regular, but what are just some goals that maybe you help families try to set for at home life First, I want to say you're totally right with that calm down time and I actually have it in my notes that, like, sometimes the goal might be that it took an hour to calm down and to regulate and we're down to 30 minutes, and I think those are those little shifts in mentality where it's like, okay, this was look at you like this, I'm so proud of you. You know it only took 30 minutes and you were able to start using your deep breaths or you were able to start blowing bubbles, and that's a big shift and a big difference. And you know if you can achieve that. You know halftime capacity that it's. They have that potential to get smaller and smaller. Before you know it it might be a five minute calm down time.

Speaker 3: 26:43

You know, like those shifts and goals. I love that you mentioned that because sometimes sometimes people miss that calm down time like that, that change, because they're still upset and crying. But that does show the ability to regulate and calm and it shows a sense of growth in that and so I love that you mentioned that. I think you know, with goal setting at home, obviously it depends on what is going on at home. If you're needing daily enemas, you know what does that look like for their coping skills. If they can, you know, do they fight you for the enema? What does that look like? Are you playing at home? Are you helping them? And, you know, can you find a tube and help them play out that process? So goal setting might be their own understanding of what's going on and if they can't verbalize it yet, can they play out this scenario and the steps to what's going on so that that you can tell that they're starting to have some understanding of the why? So you know, I think, whenever there's an opportunity to play out something and gain control, I think that is a sweet spot with kids, you know. I think, for coping skills, when you practice something outside of the stressful situation, that is when kids can access it during the stressful situation. So if you're blowing bubbles and you know practicing blowing your bubbles out and seeing, you know sometimes for kids will have that active release of look, this is that ouchy going away. You can see the bubbles going away and that's your ouchy. You're going to take a deep breath in, burn those and blow the ouchy away, blow the bubbles away. You know practicing that outside of the stressful situation, when you're in for a poke again, you, your child, most likely will be able to access that better or know what to do when that pinch is coming or that uncomfortable procedure. You know the part that's uncomfortable is happening. So I think sometimes we underestimate a child's ability to learn outside of the stressful situation. It's not just in that moment where growth happens, it's in those everyday kind of mundane moments of practicing. You know you're just sitting around, okay, can you leave below the birthday candles out. You know one thing all kids can access and I, by the way, for listeners I was holding up my hands, my five fingers, and having all my fingers go down as I blew it out, because sometimes kids need that visual to see what their breath is doing. And I tell kids all the time it's, the one thing you always have on hand is your breath to help you regulate, to calm down, and so practicing those moments at home can be really helpful for managing the stressful situations in the moment, you know. So that's a goal.

Speaker 3: 29:28

If there's an upcoming procedure, just like you are starting to do is to play with the upcoming ultrasound. You know kids need time to understand it. You know I believe in sometimes it's a little bit different, I think, than other child life specialists. I think the more time we have to play through something you know, if you know an ultrasound is coming and that's stressful and you have, you know that schedule for two weeks, well then, if you can access materials you can play with to help a child hope and have control and understand, you are helping them achieve that goal of you know. Maybe then the goal is to sit five minutes during the ultrasound to make it happen and they did it because you played with them and practice that.

Speaker 3: 30:13

So I think whenever kids can have a chance to practice a stressful scenario at home, there's always an important goal practice coping techniques at home and just have time to play and connect. And you know, when you have all these medical, huge medical goals and like household stuff and all the things that come along with being a parent, it is so hard to just sit down and be right with your child at eye level. Even for me, you know, I know I know how important play is and I know how important it all is is it hard sometimes to make even 10 minutes for my kids, you know, just for that one-on-one time. It is that's just the reality of life. Like, sometimes it's just hard to connect. But I think, especially when you're focused on the big medical goals sometimes and all the stressful things, that taking a moment to connect and see your child where they are can be huge for achieving a goal of connection and understanding and see your child for the lovely kid that they are.

Speaker 2: 31:18

You know, I'm always so touched by every time you speak about something because I love the level of understanding you have for not just for being an ad, not just for advocating for your child, but valuing connecting with your child, because it can be really easy for the medical aspect to take over your relationship with your child and our children. I think our children feel that they know when mom is always frantic and worried about your medication schedule and your next appointment and insurance and all those things. And those things do have to be dealt with. But, first and foremost, to be the parent is an honor and is a joy and I think making that's even a goal, I would say to consider is make a goal of creating more opportunities, intentional opportunities of connecting with your child on the parent-child basis. What does? Maybe a goal could be and, kim, I don't know if this is something that I would assume this is something you helped with in the hospital and maybe now. But maybe you have a child with who is very limited in certain abilities. But what are ways that you can learn to play with it? You can play with your child. How can you make play accessible with them? How can you make things entertaining for your child, how can you connect with your child on a different way? And that's a really beautiful goal to set for yourself and your child, because that's focusing on quality of life and at the end of the day gosh, I think, at the center of everything we want, it's really quality of life that we're after. Right, that's really what truly matters. When we say we want ultimate healing, it's because we want their quality of life to be as great as possible. But quality of life doesn't have to only be obtainable by perfect health not at all. I love the idea of another goal being to making this the year, or maybe this month, you are going to find a professional whether it's Kim or somebody in that field, and you are going to get an appointment set, so that way, somebody can help you create some goals and help you establish some things that you can do at home, or maybe it's.

Speaker 2: 33:51

I love the idea of having a goal of finding a way that siblings can interact more, or how a sibling can be more involved in the relationship with a brother or sister who has medical needs. Maybe it's been kind of a, maybe there's been some blocks to establishing that relationship or being able to grow that relationship the way that you had hoped and dreamed prior to your child's diagnosis. I think children have far more capacity to accept one another and connect, regardless of what's going on. There's so much to be learned, but as they get older, I think sometimes it can get harder to figure out. Okay, how can they play together? How can they communicate? How can big sister feel a part of this journey or feel like she's just as important and gets our attention? So those are other goals that I'm kind of thinking outside the box.

Speaker 3: 34:52

I do. I think those goals as you're talking, it makes me think of this. This is an overarching goal, but how do you create joy in your house? How do you create, how do you facilitate love and respect and kindness? I think those are overarching parenting goals and sometimes that might look like for siblings again taking that intentional time with them or recognizing them to acknowledge I see you right now, I know, especially if it's a long hospitalization period and you guys have there's a lot of hands on deck to help out that just to acknowledge that you see them. This is challenging schedule special time with just them or sometimes they might kids.

Speaker 3: 35:41

I think sometimes we forget that, even though kids are like in this environment, always any environment that they should just learn. But sometimes kids need to be intentionally taught certain things and that could be responsibility needs in the house that they need to do, but they need to be specifically taught. They won't always do that and that could be connecting through play. They might need to be directly taught how to play with their sibling who has a disability and what that looks like and also let them know that that looks different for them and we're gonna have so much joy and find the joy in every and all those little things. That's sorry. That's just what that made me think of how do you find joy?

Speaker 2: 36:23

Don't say sorry. That's actually probably my favorite thing. I think that's my favorite goal that's been brought up, because that, to me, makes it so easy to think about creating a ladder to that right. The overarching goal is bring joy into the house. So then you stair, step it right.

Speaker 2: 36:39

You, what are incremental things that you can do, that are realistic, that are feasible for your family, for your circumstances, that will bring joy, and stacking those over time. I mean, that's what changes lives and that's what is also a part of helping us accept what our lives are and realizing that, while this isn't what we would have picked, how beautiful and it truly can be and I often use the phrase unexpected blessings that come from this life. And I feel like, by setting that as a goal and working on those goals or establishing those goals, probably as a family, like having the conversation together, I think communicating your goals within your family is very important. I know that I could get a little I don't know selfish with my thoughts in terms of not sharing them Like I should have been with you know whether it's my husband or my mom who is helping, et cetera, but I think establishing goals together also helps the whole family unit be stronger and working towards something together, and that is only beneficial to our child.

Speaker 3: 37:54

We're trying to help Right right and that having that family meeting I think that's an interesting part about having a family sometimes is this idea that you do need to sit down and goal plan. I can feel like business-esque, you know, when you ask what your goals are and what that looks like. But that's the reality of having a successful business, right? You need to communicate, you need to have everyone on the same page and know what the other person is working towards or what's important in this moment to you and how can we accomplish that goal. You know, how often do we sit down and ask our kids what your goals are, and they might be silly goals but they might be important. My son's New Year's goal was for our whole family to play the switch together. I was like, okay, that's his goal in the New Year and it makes me wanna laugh at that, but that's how he wants to spend family time and that looks different than my goals. But I think that time where you sit down and share what's on your mind or share what you're working towards also, I think with goal-setting in community, when you're doing things in isolation or alone, those goals also can seem so heavy and hard sometimes, especially those bigger goals, and when you it's like you're saying, like to communicate to your husband, to your mom, to all these you know everyone who's in your circle and helping you that that can also help your goals feel more achievable, right when, like you're not carrying this by yourself and that it takes you know it takes the community to raise kids. It takes doctors and nurses and you know it goes full circle.

Speaker 3: 39:34

Back to communication. You know communication skills at the beginning. To let everyone in on these shared goals is important and even in that hospital setting a goal could be. I want more moments of joy with my child. You know like that's a beautiful thing to consider outside of these big medical goals, and it can help people, I can tell you, in the hospital setting. No one loves anything more than creating joy In the hospital. That is something that is a gift for anyone. Working around a family is when they want joy. It sparks this beautiful environment in the room. I think when you communicate your goals, that helps these goals feel achievable. It helps them feel hopeful when you're not just holding them on yourself and you're sharing them with other people.

Speaker 2: 40:30

It's like speaking life to them. If you say it out loud, then it feels more real. As always, my mind is flying. We just have a few minutes left Just as a wrap-up I would love to end with maybe just an example of a conversation for some parents who have. It doesn't necessarily be an older child, I'm sure it just depends on each child, but how would you encourage a parent who are recommended to a parent who has a child that's maybe ready to start being involved in goal setting? Maybe just kind of an overview of how you would recommend starting that process, because I think that's a really beautiful gift to give our child is to start teaching them that life skill of what that looks like. How do you help your child set goals in relation to when they have medical challenges going on? Is it better to steer them towards non-medical goals or I have no idea.

Speaker 3: 41:31

Right. I think all of the above of medical and non-medical. It makes me think of what Emily said in the last podcast with Charlotte, how she I know this is in relation to homeschooling, but at doctor's appointments she was having her introduce herself and say her birthday. That goes along with the kindergarten goal, but that's also a medical goal to start getting more involved in care and to speak up for that. It might just be a little blip of information that you're getting, but that's starting to build those confidence skills to start communicating with staff about your medical needs and who you are and what that looks like. I think a part of goal setting is, you know, saying back to communication again is being able to sit down for your child and you know, if your child's five, they might not necessarily they won't get the whole big picture but to say you know you've had a lot going on right now. We've had XYZ, that we're, that, we know that we're managing and supporting and maybe this is, maybe this is a child who needs dialysis and so you know you're going, you're getting dialysis regularly. I think, first off, that check-in to see how it's going is important and to say, you know, is there anything that feels not good right now when you get connected to dialysis or during it. You know what does that look like for you. Are you having fun? Is it to seem really long when you're connected? Do you need more activities planned? You know, try to give them specific ways that they can goal set and shift and say, oh yeah, you know, I don't like. I don't like this part. Okay, you don't like that part. Let's think together how we can make that better. So that's that, those ladder goals. Okay, you don't like this part of your treatment plan. You don't like. You know when you need to get connected and everyone's you know everyone's gowned up and you don't like that part. Okay, let's work through what that looks like. And that's where you get your ladder goals. Then, right, you kind of break that down into achievable things that you can change about that moment. But you wouldn't know unless you had that check in with your child.

Speaker 3: 43:36

I think so often in the hospital things just happen to kids and we expect them just to like, pick up and go with it and it can be overlooked to stop and ask what do you need in this moment? Gosh, I noticed that was really hard for you, so it might not be this formal what are your goals Conversation but it could be retrospect. I noticed that was really tricky. You know, maybe someone needed an NG tube and they need NG tubes, you know consistently that's a part of their treatment plan. To come to the hospital and get an NG tube, that I noticed that was really challenging for you. This is something you're going to need again. Let's work together to figure out what that looks like.

Speaker 3: 44:16

Do you want to drink apple juice? While you get it? You know, while you get your NG tube, do you want to? You know, do you want to sit on the bed? That's where the comfort hole is, you know, that's where like that little glimpse of control.

Speaker 3: 44:28

I think in the hospital setting, especially when it comes to care management, for kids, to know that you respect them and you want them to be a part of it, that facilitates control, that helps them cope, that helps them express what they need and so.

Speaker 3: 44:43

So I think sometimes school setting doesn't look like this formal process, but more so those constant check-ins to let your child know that you see them, you're there, or you know something went really well and you say, gosh, I noticed that went really well. I'm like this, this, this? Do you want to continue that next time? Was there something you want to change there? You know that's where I've always enjoyed being the Child Life Specialist, because that's also, you know, everyone pays attention to different things, and so I feel lucky to be the one to pay attention to those little nuances that might get overlooked. But I think that's where you start to goal set in a medical setting is by just checking in and letting your child know that you see them or that was hard, and work towards achieving something that feels better to them in the moment.

Speaker 2: 45:33

Wow that was. I'm so glad that I asked that question at the end, because your answer I've just I just started to write down. I think, not, not. I think I know I am setting a goal for myself that I'm going to start implementing those check-in moments with Emory and, honestly, goal two, with different circumstances for afterwards. A lot of times I feel like I do the prep work leading up to it and then, when it's over, we just kind of like okay, it's over, we got through it. And then when it's time for something again, then it's all right, let's lead up to it, let's prep.

Speaker 2: 46:10

But I love the idea of taking that mindful moment with your child to say, hey, I, it's wonderful to tell them how proud you are of them. They got through it. Absolutely. I love the idea of stretching this to take it another step and say, okay, how are you feeling about this? If we have to do this again, what would we do differently? And, of course, judging like is this the time to talk to your child? Maybe they need a couple of days before they're ready to talk about it, and maybe you need a couple of days to be able to talk about it in a calm way.

Speaker 2: 46:40

But I absolutely love that, and it's just such a beautiful marriage of being both parent and advocate and teaching your child to be their own advocate and, most importantly, to feel good about themselves, to feel like they matter. That's all we. That's what we really want. Kim, I can't thank you enough for joining us today. Gosh. You just amazed me with your knowledge, everything that you're able to share with us. If anybody is looking for any help in regards to any of the things that we talked about with Kim today, I strongly encourage you to reach out to her, because you do work with people over the phone as well, right?

Speaker 3: 47:17

People can hire you that way?

Speaker 2: 47:18

Yeah, okay, perfect. Well, we will, of course, share your information. Again, I have a very good feeling you're not going to be a stranger to, empowered by Hope, but thank you so much for your time and for everybody who's listening. I hope that this conversation has your brain thinking about maybe some new ways to look at goals, or maybe helping you think outside the box and, if anything, I hope that this encourages you to talk about goals for your child with somebody else. Get them outside of your head. Have that family meeting that Kim talked about. Have the conversation with your kid if they're at the right, if you feel like they're at the right age or maturity to start having these conversations, and I can't wait to hear from you all. I would love to know what goals that you're setting for your family, for your child and even just for yourself personally in regards to being a parent and advocate. So, thank you, as always, for listening to us, and we'll be back next week.

Speaker 1: 48:23

You are capable, you are equipped and you are not alone. Together, we can do hard things for our children. If this episode connected with you and you want to hear more, be sure to hit the subscribe button. We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlottehopefoundationorg. And, last but not least, if you know of someone who could benefit from this podcast, please share.

Speaker 3: 48:53

We hope it bears.