Supporting the Siblings of Disabled Children with Katie Taylor of Child Life On Call

Rhandyl: 

Hey y’all! it's Rhandyl with Raising Disabled and this episode we have Katie Taylor here with us. Katie is a certified child life specialist and also hosts a podcast called Child Life on Call. Today we plan to learn how child life specialists can help support families with disabled children and how to better support the typical siblings in our family units.

And so we're very excited to have her on. So first off, Katie, and just introduce yourself and your family career background, anything that you'd like to share about yourself. 

Katie:

Yeah. Well, hi. Thank you guys so much for having me. It's fun to be connected to you and watch y'all kind of come on the podcast scene or however that is. And I've just loved listening to your episodes and learning more about both of you. So thank you for having me.

So. Yeah, I, I live in Austin. So just a little bit away from you guys in Austin, Texas. I've been a certified child life specialist for over 13 years now and have worked clinical at the bedside and both acute and chronic and emergent and outpatient healthcare clinics and hospitals.

So it's really exciting to, kind of, come and talk to you guys who have navigated the hospital and kind of the parent perspective and if there's any kind of you know Suggestions or just talking about what child life can do for families can be really helpful. And like we were talking about not a lot of people know what child life is, so if you haven't heard of it, that's normal, right? I work with people all of the time who still don't know what I do. And they're like, what do you do?

Deonna:

Yeah, why don't you explain really quick so that we can get this started off on the right foot. What child life is? Just what you have to do to become one? Just your background on that. 

Katie:

Yeah, so Certified Child Life Specialists, we’re child development and psychosocial care experts who can support the whole family system. And we, kind of the development of the career started back in the fifties and sixties as a group of volunteers who would come to the hospital and play with children. Oh, wow. So the career really started as kind of a volunteer play based program that really grew into now what is an accredited organization.

So you have to have a bachelor degree in child life or a related field. So usually that's child development, child psychology, many child life specialists go on to get master's programs in child life or another related field. We then go through clinical training— so we work in the hospital for 600 hours, under the supervision of a child life specialist. We sit for a certification exam and then upkeep, you know, with professional development every five years to maintain that certification. I did a practicum at Children's National in DC and then did my internship and fellowship training at Inova Children's, came down to Austin, worked at Dell Children’s, and then at St. David's. And I've been out of the hospital for the past year and a half, really spreading awareness, like what I'm doing with you guys today. 

Deonna:

That's so cool. So y'all aren't all counselors? You don't have to have like a licensed, counseling degree or whatever it's called, I don't even know. 

Katie

Yeah. We're totally separate from counselors. So we don't have an LPC, we're not social workers, we're kind of our own entity. A lot of people see it as like a social worker for kids and kind of maybe that's a good way to explain it. We tell a lot of school age kids, we're kind of like teachers in the hospital. So there's a few different ways to make it easier to understand. 

Deonna:

Okay. So it's its own degree. That's cool. I kind of did not, I did not know that. That's cool. 

Rhandyl:

Yeah. There's a whole lot to it. I actually listening to your podcasts, like to how many hours that you guys have to, before you even take your licensure exam and all of that. I was just unaware of the amount of education and time and everything that goes into it. So you're definitely very skilled in what you do. So…

Katie: 

Thank you. 

Deonna:

Yeah. I knew y'all had to do some sort of, where you were shadowing somebody or something, because when we were at Texas Children's, there was a girl shadowing the music child life part of it. So I, I knew that was part of it, but I didn't know it was its own degree. 

Katie:

Yeah. And many of us don't have a child life degree. We kind of get to it by having a related, cause not every university will have child life. So there's a I really like because I bring a variety  sociology kind of degree and background to it and then have the appropriate credits to sit for the internship. But I like that because it kind of brings this diversification to the field rather than all having the exact same specific training. 

Deonna:

Right. Well, and if you have the right personality for it, I feel like it's going to work no matter how you got there. But yeah. Yeah. 

Katie:

That's, I feel like it's another podcast. I want to ask you more about, like, student shadowing, not just in child life, but like residents and all of that would be really interesting to hear. 

Deonna and Rhandyl

Yeah. We know all about that. Huh. Yeah. So. 

Rhandyl:

Okay. So for, for me, my son Barrett is two and he is our typical child. And Remi she's about to be seven. So, I'm new to the whole typical sibling thing. And, and he hasn't started asking questions quite yet, but I know that he will soon. And so I'm honestly, I'm dreading it, but, but I'm also excited about this episode today because hopefully I can learn, and prepare a little bit myself just the right words and ways to help him understand and you know, there's so much that we don't understand about Remi and the way she is.

So it's going to be hard to explain and answer the “why" questions to him. Other than, yeah, because God made her special, you know, I mean, we, we go through, people ask, You know, we have younger kids ask us all the time you know, what's this? what's that? And we, we have our ways of explaining it, but to a sibling that's going to ultimately end up being kind of take the older sibling, caretaker role as he grows yeah, it's gonna be, it’s going to be different. And we're going to definitely have to figure out how to navigate that. So yeah, so that's kind of, I'm just, I'm really looking forward to hearing what advice you have. I know that you had mentioned that sibling support was one of your favorite topics. So yeah, we're excited to have you on to, to kind of go in more depth with this conversation for sure.

Deonna:

We're kind of having you on today to talk about what that's like to have the sibling experience and so what do you think about her situation?  What could she be doing now to get her son ready to understand his sister someday? Because he's so little.

Katie:

Yeah. Well, I, I thank you for bringing this up and, and talking about Barrett and, and Remi. I think, you know, first and foremost, you'll learn way more from your friends in this space and other parents who have charted it. And what Child Life can do is kind of bring this child development background about what we know about kids development and their relationship with family and support and all that stuff. So, you know, we can talk about child life stuff, but I feel like your, your friends will be kind of the best source of advice and brainstorming. 

So, what I know about kind of child development is that toddlers are very much kind of in this egocentric world. So it makes a lot of sense that he's not so concerned yet with what's happening with sister cause he's like more concerned about himself. Right. And like the pickup truck and me getting this or that. So that makes a lot of sense. And it's really similar to grief when children have to grieve as kids. If something happens when they're two, they'll have to process it when they're three, four, five, six, seven or eight. Right? Because as you grow in this development, you're constantly changing what you know about the world and how your brain functions. 

So I wouldn't be surprised if, you know, you started talking about things now, but then the conversation happened again, like kind of as Barrett is growing. And I think what you say already about God making Remi so special is like such a beautiful place to start. And generally kids start to ask questions when they want to know the answers to them. So they're asking these things and they're saying, you know, what is this? What is that? Because they're ready to receive the answer. So you'll might notice Barrett start asking questions and noticing things and that's kind of his sign. Like, mom, can you clue me into what's going on? 

My, my favorite responses are always like, well, what makes you ask that? You know, why did you ask that? And then that gives you more context into why Barrett may be bringing something up. 

Rhandyl:

Okay. 

Deonna:

Well, and when he's growing up with her right now, he thinks that everything about her is super normal. And then over time, as he starts comparing to, he'll probably be like, wait, my sister has this thing in her neck and none of my friends siblings do or whatever. Yeah, school will change that. 

Rhandyl:

He's just recently started coming up to her with toys and different things and saying— sissy, come play! And developmentally, she, yeah, she can't do that. I mean, she can, but not at thE level that he wants to, yeah. But then it's a quick thing, It’s not like he continuously asks. But it also, in a way, breaks my heart. But it's also like he, he's going to learn, daily, that that's just sister's normal. So..

Katie:

When that happens, you could start naming that experience, so be like, what do you notice? Or, you asked her to play and,  she plays like this, and just stating it out loud. And so you're kind of giving some language, which is like really when language develops two, three, and four, putting some words to what his experience is looking like.

Okay. Um, It just can kind of start as like— she doesn't hold toys like that, she plays like this. And just naming it out loud can kind of start the conversation there where he might one day say, well, I want her to do this. Yeah. You know?

Rhandyl:

Okay. Yeah, that's great advice. 

Deonna:

That's a tough one.

Mm hmm. Well, my, my experience so far with child life, we've been in four different hospitals with her, but the longest one was in Houston at Texas Children's. And my son was, I think, a third grader when my daughter got hurt. She was four at the time. And so he was, you know, he had a front row seat to the trauma.

It was bad. He witnessed her get hurt. He's witnessed her almost die many, many times. And we uh, this actually happened during COVID. So we were talking, me and Rhandyl, were talking yesterday. Child life didn't get to have a big role in having this sibling experience because he wasn't allowed in the hospitals.

But I do remember, I mean, we can talk about what child life did with Allie later, but there was therapists, music therapists, there was Adair and her dog Bailey, and then the regular child life too. But I remember, they did try to give us advice about how to handle the injury with my son and what to do and what to tell him because we weren't really getting any advice from anyone outside of them and what we should do.

And I do remember them at the beginning, we were like, should we tell him that this is, most likely, permanent? This isn't something we're going to walk out of here fine from, like life altering, and basically, they said, you need to tell him the truth now. If you tell him, you know, several years down the line, you need to rip off the bandaid, tell him now. That way he can start

grieving that and healing now, while everybody's going through it at the same time, because they said it'd, it'd be so hard to keep a secret from him like that. That's huge, you know? So they were, they were trying to counsel us even though he was not there, which I thought was really cool. I know that's not a really typical situation, but. 

Katie:

Yeah. I love that they gave that advice because it's so true and it's not that you have to give them like the scariest version of the truth. You can give them truth that they can handle at their age and sometimes the truth is like we honestly don't know either, you know, kind of asking those why questions like Rhandyl you were saying at the beginning, like why did this happen? Why was Remi chosen to be that way? Yeah. 

But what happens when we don't tell kids the truth that the two things are. They start to make up their own stories in their head about what it is and why it's happening. And sometimes those are way scarier than the truth, they really can be. And then secondly, it's kind of this development of mistrust; although, I always tell parents you're questioning this because you want to protect your child from feeling this fear, and this reality which is terrifying to you as an adult. And like, yeah, every instinct is telling you I don't want my other child to have to feel this too. The trauma. The trauma of it, but the truth is that, not feeling like you can rely on your parent as a trustworthy person to always be really honest with you is way scarier, and harder to handle than getting through the reality of something that's scary with somebody that you love. So it's like the connection of navigating the hard truth together is always going to win over protecting or lying to them to keep them from having to be a part of it. 

Deonna:

That's so true. And I, and I mean, I think he would 

Rhandyl:

I love that.

Deonna:

I do too, cause I think he would have known, oh, this is serious because me and my husband were like shaking and going through this incredibly traumatic experience throughout that stay at the hospital. So he would have been like, why are y'all acting this way? If everything is gonna be fine. I mean, you have to tell them if they're a certain age, because otherwise it’s confusing.

Rhandyl and Deonna:

Oh yeah, they pick up on your, they pick up on your behavior. They definitely do. Kids are smart. They are.

Katie:

And like when you're shaking like that, be like, do you see how mommy like, I am shaking like this because this is how my body is handling this. I notice your body does this when you hear this news. You know? And just really having the human experience in front of your child. A lot of parents tell me they don't want to lose it or cry or be upset in front of their kids. And I totally get that. Yeah. But there is a part of this human experience that is very real, and that's a really  understandable way to react when you're in trauma. Oh yeah. So validating that for them so that when those things come up for them, they're not trying to shut it down, they’re willing to share it with you too. 

Deonna:

Oh yeah. I think pre injury, our family was very like, suppress it, don’t, don't tell anyone if you're sad or scared or upset. You know, that was sort of our way of life and now we're just, I mean, even this morning my son was like, I am so nervous to go to school. And I was like, I know dude, like, you know, you, the more you talk about that stuff, the more open you'll be even when they're adults. So I think it's  good to be that way but it's hard. It's hard telling horrible truths when they're little. I mean, he was a third grader. We thought, oh, you're so old. He really wasn't. He was a little kid, you know? 

But I have this memory of child life because it was during COVID. So like I said, he couldn't come in, but they felt like it was very important for her to see him. And we were staying across the street at this high rise apartment and her window looked out onto that high rise. And I remember Child Life making all the therapists, and all the nurses, and everyone come in and move everything to the window. And they got her up in this tilt table so that she could look out the window and see him on the top of the roof. And I remember thinking that was such a pain in the butt to get her over there. It was, I mean, it was like a whole production, but Child Life was like, she needs to see him out that window.

And so it was so cool, but I mean, they, Child Life moves heaven and earth to make your kid happy during their stay as much, as they can be. I mean, they were, they were definitely our favorite experience of the whole deal. I mean, my daughter loves these girls still so, it was a good experience. That part of it.

Yeah, yeah, I would say 

Katie

That was so important, probably for him too. Yeah. 

Rhandyl:

Yeah. So as far as Child Life experience goes in our long hospitalization, the one big thing that stands out. So on Remi's first birthday that was August 27th of 2017, and that is the day that Harvey hit Houston, the hurricane. And so, we had made all these plans with Child Life, doctors, all of these things for Remi on her first birthday, she was going to get to go outside for the very first time in her life. She's going to get to go outside.

Deonna:

In her life. 

Rhandyl:

And so cause when she was transferred, she was in a little incubator and literally it was going to be the first time she'd been in fresh air. Of course, that got delayed by about a week. But  they made it happen. And we, I mean, it was like Deonna explained, it was a whole production,   they required a doctor, two RTs, like, of course, Child Life was there, I think a couple of nurses, it was a whole big group of us but we went out to, it was not even like the ground floor or anything, they just had this atrium area and we went out there. And it was a beautiful day, and we stayed out there for probably an hour and we were putting leaves in her hands and it was just, it was so special. Even if it wasn't on her birthday, it was still this huge, special moment.

And then they also, when she was finally discharged months later after that Child Life and the music therapist, they all set up this kind of like a Mardi Gras type parade for her, all the way down the hallway, and they had a boom box, and they were playing zydeco music, and everybody had streamers, and It was awesome.

So a lot of  our child life experience, a lot of it was for, for me and my husband. Of course, you know, and Remi was, she was still really young. She was a baby, but and she was our first child. So there wasn't any siblings involved, but yeah, we had wonderful experience with our Child Life Specialist at Texas Children's for sure.

Katie:

I feel  so  amazed by the profession when I hear stories like these, and it's just so incredible when a hospital really invests in good people to come in and make these experiences because throughout so many dark times in a hospitalization, you have to have bright spots. Yeah. And a lot of times child life is in the background working, like attending every single round to make sure that everybody knows that this is the day that Remi's going outside. And just these kind of inner workings that have to happen in the background and the handoff between child life specialists aren't talking about blood pressure, we’re talking about how the child reacts to this or how they do with this pain. You know, what they said they wanted to do in the playroom today, but all those are so important and crucial to long hospitalizations, but I'm glad that both of you were able to experience some of that. 

Deonna:

Oh yeah, Child Life knows how to do a birthday party. They're so good at helping kids have a bright spot because that's some of the hardest days of my life. It's some of the hardest days of Rhandyl's life. Oh yeah. That's what we were saying. Yeah. Today, knowing even, even us knowing that child life was coming in there and there was going to be something for  my daughter to do. It was huge. And sometimes I would leave when child life was there because it was like, okay, I can go get a coffee and sit somewhere for a minute and get a break, you know?

So, I mean, it was huge. They were definitely the most important part of our stay. As far as I'm concerned. I mean, I know the doctors are important, whatever, but, you know, whatever, but yeah, they were the big part for us, for sure. And that's who we still have relationships with, even years later, we still are friends with these girls, so it's, it's cool. It's a very great profession for sure. 

Rhandyl:

Yeah. You guys have a very special place in our hearts, for sure. Yeah. 

Katie:

Thank you. I feel like I'm, I'm gonna, I know Adair and her dog, actually another mom mentioned them on the podcast a couple of weeks ago, which is amazing. So I'll, I'll reach out to her and make sure that she knows that you mentioned her.

Yeah. Yeah, I am, I’m so appreciative of you sharing that. So thank you. It's awesome. 

Deonna:

We love, we love Adair. And then me and Rhandyl both had Marial, who's a music therapist. She's like a legend. So we love her. Yeah. She, she basically got us through. I remember one day my husband was like, oh my gosh, there's this girl in here, she’s like, Disney princess, like, I, I don't even know how to. And I was like, what are you talking about? Cause we didn't get to go in at the same time; we had to take turns. And she was like singing and she was learning all these songs that Allie liked. She would go learn them that night and come back the next day playing it. And I'm just like, Oh my gosh, how are you learning these songs so fast? It was crazy. And Allie was asking for these really obscure country music songs that Marial had never heard before. She had to go look up online how to play. Oh yeah, yeah, it was funny. 

Katie:

I hope parents who are listening who haven't met Child Life yet can feel empowered to ask your care team about it. Because sometimes you do have to ask for it, which I wish that you didn't. It's just kind of the way our profession is functioning, right? We're shift work. Mostly nights and weekends are in their emergency department and so there's less coverage. But like kind of the stories that Rhandyl and Deonna are sharing, Child Life can help you kind of come up with some of those things to make the hospital stay a little bit easier.

If you have another son or daughter who has a birthday or a special milestone, Child Life can help with that. I was talking with a mom once and she was like, it was the simplest thing, child life walked in with a bag, like a goodie bag for Halloween to send home to the sibling. She was like, I was so grateful because I didn't have the capacity to go out and put a Halloween bag. You're so overwhelmed. And then the sibling at home is like, somebody is thinking of me and it's, it's so simple, but that's kind of the tools and resources that we have. So, you know, brainstorm or feel free to reach out to me and we can come up with ideas. But whatever we can do to, you know, you're a family, your kids are kids, we need them to have that experience in the hospital and outside of it. 

Rhandyl:

I love that. We, so we reached out to other caregivers in our Raising Disabled private parent group. We asked them about topics that they find difficult explaining to their typical children about their disabled sibling. And what difficulties they face as typical siblings and any support that they wish that they had. 

And one of the caregivers, she responded with my eight year old is starting to notice my daughter behaves differently than others her age. And I'm not sure how to explain something he can't see. Like when my other son had a G tube, that was something that he could visually see and understand. But my daughter's developmental delays and her mental issues. I don't really know how to explain it to where he would understand and she wouldn’t feel like I was talking bad about her. 

So it's definitely.. and the physical things, just from my, from my perspective, that's kind of how I feel like I feel like I can explain what this tube is helping her do and the visual things. But it's the other delays that are yeah, I can see how that's so difficult for caregivers in that situation to explain. So do you have any advice on that? 

Katie:

Yeah, I, I think it's such a good question too, like the physical stuff. A broken arm, a limp, a wheelchair is so easy to explain. One of the things that I would recommend is like, depending on where the sibling is, what age they are. 

So this is an eight year old. Think about the context of what in their life they have that they can't see either. Like something is like love, right? Like we can't see it, but it doesn't mean it's not there. Your stomach rumbles,  we can't exactly see it. And so just relating or normalizing this invisibility of what we can't see but can still exist.

So being like, you can't see your love for me, but we know it's still there. Or it's kind of like, we can't see why her brain doesn't work the way yours works. And, I think that is another way to put it differently rather than a label like it's bad or whatever that word would be. It works differently.

And I like to get as technical as the child likes to get, so literally drawing out a brain, and if you don't know what it looks like, Google image a drawing of a brain. Yeah. And then talking about how your brain is in charge of all the different parts of your body— your walking, your talking, your breathing, and this is the section of her brain that makes her talk this specific way, or not talk, or makes it hard to breathe because this is what connects. And it's formulating for them an understanding that although I can't see this, this is the way that this works. 

Rhandyl:

Yeah, you're actually creating a visual for them. Yeah, I love that. 

Deonna:

That's a good idea. 

Katie:

What do you think, Deonna? Have you been in that situation before? 

Deonna:

Well see with my daughter everything's visible, so all her problems are visible. But even the other day, we were getting..and I think this is why siblings of disabled kids are very cool, because we were getting in the elevator the other day, and it was me and my son and daughter and then some older people, and then this kid ran in. And he had probably autism or something, ’m not really sure exactly, but something going on and he jumped in and he was acting a certain way, you know? And when we got out of the elevator, Allie was asking my older son, what was going on with him because the older people, he didn't get a welcome reception from the older people.

And. My son was like, I don't know. He probably has something going on. He probably has autism or something and he can't control what he's doing and saying he just that, you know, and I've never even talked to my son about that really. But he knew something and I knew something wasn't. You know, I hate to use the word normal, but, there was something going on, but my son just knew and it was, you know, so it was cool because that's not even the same diagnosis as my daughter, but he knew there's something going on with that kid where he's not completely going to be able to act the same way as a kid his age. He just can't do it. And so I think that's that's that I mean, you know, I've had experiences like that before but 

Katie:

Yeah, that's impressive. 

Deonna:

Yeah, he knew. 

Katie:

Yeah, and I don't know how you guys feel but I really like to encourage curiosity about things instead of just you know, labeling and walking away and not talking about it.

So you know, bringing up the thing as she's talking about to her 8 year old is noticing, and yeah, and I call it run to the danger. That's what my dad calls anything that you don't know, just like run to the danger and try to find out and figure it out. And I just think it's such a good practice or.. that's funny.

Like, well, how, why do you think her brain, you know, just, it's really staying curious about it, without the labels. And as you know, an eight year old too, might start getting some of those peer input about what's different about a sibling, and coming up with responses together as a family can help prepare them when they're in the moment.

So talking about that ahead of time, even if it hasn't happened yet, like, well, what if somebody else notices, what would you say? And so just having that preparation, preparing for when, or if that does happen so that when, or if it does, they have kind of a response and the more they practice it, the more confident they feel.

Deonna:

That's a good idea. And I, I do think what you were saying earlier is true. This isn't a one conversation and then you're done and you move on with life. As they get older and their understanding gets better, it's just gonna be this constant thing. Evolving. Yeah. Oh yeah. 

So we talked to another mom named Jana, and she was saying, I'm going to kind of read it a little bit.

She said there's lots of advantages and challenges. She said her daughter has for sure started to notice that things are hard for her son, as well as he's great at things that she struggles with, which I think is cool. She said she also comments that meeting people is his superpower, and she'll just stand beside him and wait for him to make friends and introduce her.

And. I do, I mean, it is funny because I've had experiences with that, where people, like everyone knows Allie's name and Cole's always right there and people will be like, hi Allie. And then just, it's like, he is not even there. And I know that's gotta be so hard for siblings to be like the invisible, unknown. And we don't treat him like that, but the world treats the other sibling like that. They're not as quote unquote important, which we tell my son all the time that's not true. But yeah, I mean, everywhere we go, people say hi to Allie and then Cole's just sort of there. Or if they do talk to Cole, it's always related to how he is a brother to her. Like he doesn't have his own identity. It's all about her. Everything is. And so that's hard for me and my husband to watch people treat her that way, but you know, it sounds like she's she's Understanding that that's sometimes their role and I I kind of hate it sometimes but it's the way it is. 

Rhandyl:

Yeah, I've actually met her son and that really is his superpower, like, introducing himself and  like meeting people. It is, it's awesome.

Katie:

I think. Yeah, it's like then having her name, her superpower, like, what do you think your superpower is? And, you know, it was kind of, I was reading that and it's amazing and it sounds like she's really good at caring for her brother and then just pointing out like, how are you good at caring for yourself? Just pointing out that she has a responsibility, as we all do in our family, to care for one another, but it's also our responsibility to care for herself and have her start naming those things.

Deonna:

Yeah, that's a good idea. 

Katie:

I, yeah, I've, I've loved the idea of like naming everybody's superpowers and gifts. And it's like, oh, there's that gift again. There's that again. Yea highlight it. it's really cool when you can pull it out of each other instead of your family's usually all under a microscope and you're seeing everything they do wrong or at least that's how I feel.

Rhandyl and Deonna:

Oh yeah. Oh man. For sure. 

Deonna:

Well, and she also is saying that she knows that that the daughter, is it the daughter? Oh, that's passed him up in academics and everything, even if she's younger. And she just had to learn to be patient and to be encouraging. And that the mom loves how they can just see their strengths and weaknesses and can help each other out, which is super cool.

Katie, Rhandyl, and Deonna:

Yeah, it's amazing. Good job, Mama. I know, right? 

She's amazing. Yeah, she's doing it right. 

Rhandyl:

So another mom, she wrote in that her her disabled child is the youngest of three and so she feels like her other kids have more responsibilities than other children their age, of course, and they explain that this is our family and we have to work together to make it work, and all families have different walks.

But she has a lot of guilt that they do have a lot of responsibilities and don't get to be kids all of the time. But she does think as a positive that it's made her older kids more aware of others and making them better at helping. And serving and that they're fierce advocates for their little sister and they often explain to other kids why she does things a certain way.

But she and another mom also made a point to say that they try to make sure and spend one on one time with their typical kids separate from their disabled children. So that they don't always feel like they're caregivers to, or so that there's so much attention on the disabled children with therapies and just all the things that come along, like just to spend some one on one time with those typical siblings swear they don't feel left out or kind of like Deonna was saying with Cole, so yeah..

Katie:

I, yeah, that guilt. Is very real. I'm thinking about my friend Effie right now who does that Once Upon a Gene Podcast and her son, Ford is at a camp for the first time away and in my head I was thinking oh my gosh, she's never been away from him, he’s now at overnight camp. Yeah/ And she's going to have this one on one time now with her daughter and how special that is  but it can also take so much energy, right? You're getting a few nights without him there and now so much energy pouring into this other relationship. Which is amazing when you can make that happen but not to discount those like one on one moments that happen really fast throughout the day are still making an impact. Like, you’re helping with dinner together, or just these small things.

Sometimes it can be really big, right? Like a couple of nights away or even a date night or letting them pick out something, but these small moments that happen throughout the day, just integrating them, they all do add up and make a difference. So I have a, another kind of funny, not funny story, but funny story about a friend who grew up with a cardiac condition and also acquired HIV during her first open heart surgery and her older sisters were always made the ones to do the chores. And she was like, I never had to do anything. Yeah. And she's like, and my sister would take out the trash and I'm just sitting there relaxing, and now they resent me for it. 

Deonna:

That was, that's basically our house. Like my daughter is always like, I don't have to do any chores cause I'm paralyzed. And we're like, oh my gosh, I can't believe you're saying this. And Cole and I, and I can totally relate to this girl that said this stuff. She's my friend and the kids do have these responsibilities that are just so different than their friends. Like my son, when we don't have nursing for sure, like some of these nights, but my son completely does all of our dishes and cleans our entire kitchen every night.

Like what other sixth grader is having that type of role? But we don't have time to do that. Me and my husband are so busy doing all the caregiver type stuff at night. Which he gets an allowance and all that stuff. But it is, he does these things that people just don't get or understand. I mean, things that even adults, it's just such crazy responsibilities. And so I feel her on this whole guilt thing, because there are times I'm like, I wish Cole could have just had a normal childhood. And he, he can't because of what we have to use him to do, as part of our family, but I'm not saying it's bad to make kids work a little bit it's, it makes them, you know, better adults in the long run.

Rhandyl:

I was going to say like in the long run the responsibility now, I, I would assume later in life that he's going to be a pretty good, responsible adult, for sure. 

Deonna:

Yeah, we're like, we're training you to be a good husband someday, basically, so, you'll, you'll do a good job.

Rhandyl:

I'm like, I need a, I need one of those Cole’s around my house. I mean, I have a Cole, my husband, but he doesn't go around cleaning my kitchen at night, that would be, that would be quite..

Katie:

You know, Ashton Kutcher, Ashton Kutcher talks a lot too about like being that different sibling and it's sometimes nice to find people in the spotlight who are going through similar things and seeing how successful they are or not even that, but just like the perspective that it brings and just everyone’s..

Deonna:

Does he have a disabled sibling?

Katie:

Yeah. I can't remember the exact diagnosis if it's I can't remember. Yeah. But he's very vocal about it. 

Deonna:

Oh, that's cool. I'll have to look into that. 

Katie:

And, like, even if you see them taking on these responsibilities, like, saying, like, it makes sense that you would feel a little bit bitter about having to do this tonight. I would feel that way too, you know? 

Deonna:

Well, and I was telling Rhandyl this yesterday, but it, it goes beyond them just having chore responsibilities. My son, the other day, was talking to me because I just lost my sibling. So now it's just me. And I was saying something about, oh yeah, I'm going to be taking care of Nana and Grandpa when they're old. And I was kind of making a joke about it, like saying, I don't have a sibling to help me. And my son was like, oh my gosh, that's going to be me someday with you guys. And I was like, oh no, I didn't mean to put this burden on him as a responsibility. And what 11 year old is thinking about caregiving to their parents, or even their disabled sibling when they're older. That's not something most kids have to think about. And so they think about things, I think that they, the parents don't even know, unfortunately. They, they deal with these difficult thoughts that hopefully they tell us and we can talk through with them, but they just live a different life. It's, it's tough sometimes. 

Rhandyl:

Yeah. And with Barrett, I mean, honestly, we, since he was an infant, my husband and I will, even though we know he doesn't understand it, obviously, right now, but we'll talk about the responsibility that he's going to grow up with, with Remi as his sister. And he obviously doesn't understand the seriousness of it yet, but we are already talking about it to him. And it's hard, it's hard for us, we knew that though going in to our second pregnancy, we knew that that was going to be the way it is, but it's not easy,  

Katie:

Not at all. 

Deonna:

Another thing I wanted to bring up about what she said and talk to y'all about is- she was talking about how the siblings are fierce advocates, and how they see other kids that are different and go up to them. And when I met this girl Samantha, her kids just instantly latched on to my kids because they knew, they knew this was new for us and that it wasn't going to be easy. They became friends. And they're really good with my daughter. 

And it's funny because we have a lot of people who treat my daughter as if she's a little porcelain baby doll. That's honestly how most people treat her. But these kids treat her as if she's just another kid and just appear and they don't baby her; they don't. But they also advocate for her; she’s not even their sibling. But I think that's cool when these older siblings or younger siblings, like what's going to happen with Rhandyl. They're going to advocate for everybody. It's not just their blood. It's going to be anyone who's different. And so I, I love that about Cole, my son, already. I love that about this girl's kids. You know, that's something we've had an experience with already. 

Katie:

It's so impressive to watch these kids just take on such a mature understanding of the world that is Different from so many others. It's like their superpower too.

Deonna:

It is. Oh, they've lived a life that most kids their age, hopefully will never live. I mean as far as like the trauma or the stress and so yeah, they, they're turning it into a good thing, for sure. 

Okay, so we talked to another girl named Megan, and she said, my three year old is starting to ask a lot of questions about her little brother who has brittle bone disease. Which that's another thing that you can't see. She asked why she always has to be so extra careful with him, and why does he go to the doctor all the time, why he can't play like the other babies, and... Why do people always come over to the house and work with him and just so many other things? And she said there's a lot of constant reminding her and other people that we can't do certain things. She said sometimes I don't even know how to answer her questions because we too don't fully understand the whys either. And she's one of his biggest cheerleaders and advocates, but she said we hear her telling other people to be very careful with him because he gets owies very easily.

So what do you think about this experience with her? 

Katie:

Yeah. And OI is so hard to be just because you have to be so careful and so many doctors visits. I think it would be a good idea to just kind of start making a note of what she is asking questions about and then some of that one on one time. Just kind of bring it up, whether you're playing with a baby doll and maybe doing some of the things that. You would do to the baby, on the baby doll, and see if she would want to help. 

The other thing is really getting her involved with some jobs to help her feel like a part of it because she can't play so rough. What can she do? Can she bring this over? And then like a lot of praise right and reinforcement that's really helpful because it is and it's genuine praise because, it is helpful.

The other thing is that we haven't talked about yet that siblings can sometimes do is one express some jealousy over what the sibling who is disabled is going through. So it could seem, seem like the craziest thing in the world that your sibling would want to have that, but it makes sense because they're getting attention. Yeah. They get more one on one time, they get special time with this or that. Mom or dad maybe can't pick them up as much as they want. So just a lot of different feelings can come up there.

And kids can also blame themselves, which feels a little bit difficult to imagine, right? Like how would she play a role in this? But like, Oh, did I touch him the wrong way? And this is why it happened. So just taking this, that off the table that this is not your fault. This is not mommy's fault, daddy's fault or brother's fault. This just is what it is. Yeah. So always kind of keeping those things in the back of your mind.

Deonna:

Yeah,  I've witnessed that. I mean, I don't think my son is jealous of her because he knows how hard her life is. But I do, they do get so much attention, and I do think that is very difficult. Even we do something, I'll tell y'all about here in a minute, but we give toys to the Child Life in our town every year at Christmas, and I called it Stuff The Van with Cole and Allie because I didn't want him to think, well, this is all about her. It was him too. He was helping us organize it and do everything. So you, it is hard though, they do get jealous of the attention, I think, for sure. That's tough. 

Rhandyl:

Yeah. And I hadn't really thought about that, but I mean, so like Barrett, it's funny. There's a couple of things that he'll do. So Remi wears glasses and so all of a sudden, recently, my son has become obsessed with glasses and he always wants to be wearing somebody’s glasses, he'll even take like Mr. Potato head glasses and like put them on his face. And he's always pointing out sissy's glasses. 

And then she has an AAC device that she uses to communicate with, and he sometimes will want to play with it, and we have to tell him, explain to him, like, no this is Sissy’s. But then we're also trying to explain to him how they need to share things too, so, that's a challenge. Because there's, there's really not a lot that's his that sister can't play with or use, but there's a lot of things that are hers that he can't play with and that is totally different.

So I honestly hadn't thought of that perspective yet. If he's going to be like, why can't I have a ventilator? I mean, I, I hadn't thought about the fact that, that he might be somewhat, I mean, I've thought about him being jealous of the attention, but not necessarily the, the accessories and all, yeah, yeah. 

Deonna:

That's funny.

Katie:

Yeah, I mean, it's one of those things, too, where you can normalize that, too. Like, mommy has a razor in her shower you can't play with, you know? Yeah. Like, that belongs to me, but I'll share my food with you. So there's kind of boundaries sometimes around things in the house that can and can’t.. it'll be interesting to hear what you observe and, and see in them as they get older. But yeah, it's hard. I wish I had all the answers. 

Deonna:

Well, even the other, the other day, these kids were at our house and it was really funny because Allie has a big screen TV in her room that she watches while she does hours of treatments every day. And she has the bed that goes up and down and all these things.

And I heard these little kids saying, I'm so jealous of Allie. She has a TV in her room and she has a cool bed. And I'm like, what? Like they're jealous of Allie? Like what is happening right now? But I do think kids don't, they just, they want their stuff or whatever. They don't really think about what Allie has to go through. And I told them, I said, well, she has a TV cause she has to be in here for hours doing treatments. And they were like, oh, you know, so it was like, that's why. I mean, normally I don't think my kid would have a big screen TV in their room. Maybe. I don't know. I'm not really sure. 

Rhandyl:

Yeah, I don't plan on putting a big screen in Barrett's room, but who knows Remi has one too because of the same reason.

Katie:

The sibling rivalry doesn't stop no matter what two kids you have. So, yeah.

Rhandyl:

So we had a, just some different questions about Child Life specifically. So inpatient, cause honestly Deonna and I didn't either one get to experience how Child Life Specialists Facilitate sibling connection during a long hospital stay, because obviously they were hospitalized during COVID and Remi was the only child. So yeah, just kind of explain sort of how you guys facilitate that?

Katie:

Yeah. I think, looking at like the age of the kids, but they're each other's playmates and like rock when they're at home. So really trying to emulate that however we can in the hospital. Sometimes that looks like decorating the hospital room with pictures of the sibling at home and then vice versa. I've done it where like I'll have the doctor or nurse send a note home to the sibling. So trying to connect those two things together. Yeah. 

I also really love those simple art projects where the sibling at home can do a handprint the sibling in the hospital can do a handprint, and they both get copies of each other’s. So just kind of that physical, and sometimes we do bracelets and wear each other's names, and these are all just kind of really simple but meaningful things for both of them. 

And whenever there's education that we do in the hospital, we try to get the sibling involved. And if they can't be there while we're doing any kind of education or diagnosis education, then we make special time or send materials home for the sibling to be just as involved as the child who's in the hospital.

Deonna:

That is cool. Now that you mentioned that, I do remember the Child Life Specialists would give Allie a craft and they would do it with her and, we would give it to Cole or sometimes they would send stuff with Cole and he would do it and then we'd bring it back up there. So I, I kind of forgot about that, but we did do some stuff like that. Yeah. 

Rhandyl:

So, are there different things that you guys do, like, say, whenever the child is getting ready for discharge to go home? Like, tools that you use for siblings to prepare for discharge and out of the hospital, into their home environment with everybody in the family and..? 

Katie:

Yeah, I think preparing them for what it will be like at home because, likely after discharge, it doesn't mean, you probably go back and see the doctor pretty frequently at first for any kind of  updates or therapies or whatever that would look like. So having the plan with like, well, when we go to therapy, maybe grandma or grandpa is going to pick you up from school and  thinking about the logistical impact that it's going to have on the sibling is a good kind of preparation tool.

Also, if there's any kind of devices or braces or whatever may be coming home to letting them ask the questions before discharge is helpful. So I've even done like some videos for siblings, like we're getting ready to welcome your sibling home, here’s what you can expect when they get there. Here are somewhat of what your jobs can be to help. That was during COVID because we couldn't see each other in person, but just any kind of preparation that we can do so that. You can kind of think that when you go home, things are going to go back to normal, but you guys know there's just now a totally new normal.

And so the siblings logistical and kind of going back to that egocentric, how is this going to affect me? Yeah. Reaching out to the siblings teachers to prepare them, their counselors, I say whoever is in that school needs to be on that siblings team. Yes. Because you have only so much bandwidth, so you need the lunch lady to be looking out for him and the principal and the counselor.

Rhandyl:

Yeah. Oh, wow. I hadn't really. Yeah. Yeah. That's great advice. 

Deonna:

Yeah, I remember when we moved here. When we moved here, I walked into school with Cole and this had all happened and then we moved here. So new school, everything and it was so fresh. And I walked up to his teacher and I was like, I don't have a lot of time to talk to you right now, cause it was in the middle of the day. But I said, our entire world has just fallen apart, like he might not be, this isn't normal. Like he, I mean, he might cry in the middle of today. I don't know what's going to happen, but, and I got to talk to her later, but I mean, the whole school came around him, which was super cool, but yeah, you do have to prepare everyone. Cause that sibling is not necessarily going to be okay for a really long time. In our situation, it was a really long time. So. Yeah. Yeah. 

Rhandyl:

So once patients leave the hospital and their family units, their home it seems like most Child Life Specialists are inpatient. And you had mentioned, kind of in the beginning, with some of your experience, like clinics and outpatient type work, how does that look? Are you guys involved in home health in any way? Or what does that look like whenever that inpatient relationship ends?

Katie:

Oh, I know. So this is like my whole mission with Child Life On Call is to expand Child Life beyond discharge. Yeah. And to have it before you even get into the hospital if you happen to have a prepared admission. And so we, we do work inpatient, outpatient, so you'll likely see us in large children's hospitals is going to be the bulk of where you see child life specialists. Right. Even so we're only seeing about 30 to 50% of families who come through our doors. So there is a big inequity there of who gets access to child life services. 

So that's one of the things we're trying to solve with our app. And we're partnering with hospitals so that they can give families this app, which has Child Life resources, information, talking about sibling activities, the podcast is on there, just all of these resources for families.

But I would say if you're ever in discharge, looking for child life, you will be able to find them probably most available on like virtual sessions. So you could type in child life specialist, virtual— Child Life On Call, we have a virtual child life specialist who meets with families. Yeah. You know, and ultimately, what we want to do is almost work ourselves out of a job for you guys to feel so empowered as caregivers. You feel like you know how to navigate it. And then we're just like backup support when you need it. So that when we're in the hospital, you really get those quality visits and that quality time that the child life specialist spent making sure that Remi could get outside for a full hour. Like that's what we want child life concentrating on.

So how can we empower families? At discharge and beyond we are branching out to different hospice we're not in a home health that I know of yet. We're in a few schools across the US which is exciting. So working alongside school counselors, and helping kids with coping skills or any kind of diagnosis that they may get, but don't have those long hospitalizations, right?

So we're, we're growing, we're expanding it's new territory for us, but it's, it's all really exciting.

Deonna:

So, your app is called what?

Katie:

It's Child Life On Call.

Deonna:

Child Life On Call. 

Katie:

And right now, it's not available to like the B2C (business-to-consumer) kind of consumer yet where I don't want parents to have to pay for this resource when they should be getting it through their hospital. So, right now, we're partnering with hospitals and if you have to go to the certain hospital, they'll provide the app to you. But that will change here in the next few months. Ooh, okay. Spoiler. I know. 

Deonna:

Yeah. And are there any other journals, or books, or groups or things that you guys recommend for people?

Katie:

Totally. Yeah. On my Amazon storefront, it's Child Life On Call. I have all of my favorite sibling books, diagnosis books, playroom toys, how to decorate a hospital room. And then I just have so many favorite things that I like to work with so it's all on the website, childlifeoncall.com/katiesfavorites. And so you can find those all there but..

Deonna:

We’ll link to that in the show notes. So people can find it because that sounds, yeah, that sounds really good. Even if you know someone who's, I mean, I've experienced situations where we knew someone who was going through this and I think it would be a good thing for even, even if it's not your kids, like, there were a lot of friends of my kids who were going through a really hard time losing, you know mm-hmm. the ability to play with Allie and being so confused about what the future of that friendship was even gonna be so I think this could benefit a lot of people. 

Rhandyl:

Yeah. I mean, so Remi was not the first grandchild, so she had first cousins, and I had a lot of friends that had younger kids. And so I will definitely be sharing these cause even though we're almost seven years into it, we still,  get lots of people asking for advice. And a lot of times it's it is sibling related, and I don't have a personal experience with this. So knowing that these resources are out there and knowing where to find them and share them is, is very helpful. 

Katie:

Yeah. Childlifeoncall.com/siblings-- I have a bunch of free downloadable resources there. It's a good place to start. And just reaching out, DMing on Instagram, happy to help guide you in what direction a great resource would be. There are camps that are just for siblings, which I think are wonderful experience to go with other siblings who are just like you. And it's, there's so many resources out there. So happy to share them. 

Deonna:

That, that's really cool because I know every time Cole meets somebody who has a disabled sibling, they just are instantly connected. They understand each other's life in a way that most don't. It's just like us moms. We understand each other the same time with the kids. 

And the last question we had for you today is, is there ways that people can support their local Child Life Specialist if they know that, like, we live in a town that has two fairly large hospitals, they both have Child Life.

Is there a way that you recommend people who want to support you guys, because I know y'all need money. You need things. So what what do people do?

Katie:

It’s so crazy, right? I know hospital makes so much money and we're like, can we have crayons? 

Deonna:

I know it's kind of messed up, but it’s the world we live in.

Katie:

Yeah, I would reach out to most child life departments have website page and it might be for students, but there might be a number on there. The other thing is that usually around the holiday time, we'll put out like our holiday needs list. And so you can go on there, some have Amazon wishlists, which is always a great way to support the program. And honestly, just asking for child life to be present. And if you're ever in rounds with a supervisor or a director level on the unit, just talking about Child Life and the impact. And those follow up calls that you get that talk about your experience, mentioning Child Life does so much more that we can say, and really helping make sure that our services are more widespread to others in the hospital. 

Deonna:

Yeah, I definitely agree with all that. When we moved here, we started a thing called Stuff the Van with Cole and Allie, and we took the list from the Child Life person, and then we asked for that stuff and it was all sent to our house, and then we went, and we deliver it every year. But the holidays is a huge need because I remember in Houston at Texas children's, we were doing a different over the top activity with Child Life every day, and that has to come from somewhere.

I mean, they weren't, I don't know how they were getting all of that stuff, but even my daughter,  we were hospitalized last Halloween and, or around there, you know. And we even had Child Life bring in like special gowns that they all could wear that were fun Halloween or like she got a quilt that some group had made. So there's so many cool ways you can donate to this group and they'll tell you what to do, I think. But yeah, there's so many ways. 

Katie:

I mean, and donating things that we can give out is great. Donating things that are plastic that we can wipe for reuse in playrooms are always really nice to get really loved on. You know, we try to stay away from any kind of like guns or anything like that. Yeah. Those holiday donations help us the entire year. So, It feels like you're giving a lot and maybe we're getting a lot, but it really does last us. And it's, it's amazing when the community comes together, but I mean, thank you for even thinking about doing something like that because it, it really helps. 

Deonna:

Well, we just, we remember being in Houston and there was so many fun things they did and we started to think, wait, where's this all coming from? It’s, somebody had to give that to them probably. They can't just buy all that all the time. There's no budget in the world big enough for that. 

So, yeah, well, we just are so thankful that you came on. I know I learned so many good ideas and we've been navigating this with my son for a few years now, and I would like to say it gets easier, but as they get older, things can get just, the more they understand sometimes, the harder it can be. But we've learned so much today and we're just so thankful that you came on with us. 

Rhandyl:

Yes, thank you so much. 

Katie:

Thank you for having me. 

Rhandyl:

Yeah,  I'm gonna definitely re-listen to this over the years because there's still so much that I know is coming. And we're so thankful for you, Katie, for coming on, and giving us advice, and sharing information about your podcast, upcoming app all the things. So yeah, we just really appreciate you. 

Katie:

Thanks for having me. It's definitely tricky and y'all know, trust your gut. Nothing has to be perfect. These are always evolving conversations. You can always return to your child, and we're not going to get it right. So you're just such amazing people for making this forum happen for your community, and I'm grateful to be a part. So please reach out whenever you need it.