In this episode we discuss some challenges and resources for siblings taking on multiple caregiving roles with Director of the Sibling Support Project, Emily Holl and Dr. Meghan Burke from the University of Illinois Urbana-Champaign.
Transcript for this episode
SLN's January 2022 SIBPOSIUM 1/24/22
Sibling Support Project
Sibnet
Sib20
Sibteen
BIPOC Sibling Roundtable Series
SLN COVID-19 Resource Center
SLN Caregiving Resources page
In this episode we discuss some challenges and resources for siblings taking on multiple caregiving roles with Director of the Sibling Support Project, Emily Holl and Dr. Meghan Burke from the University of Illinois Urbana-Champaign.
Transcript for this episode
SLN's January 2022 SIBPOSIUM 1/24/22
Sibling Support Project
Sibnet
Sib20
Sibteen
BIPOC Sibling Roundtable Series
SLN COVID-19 Resource Center
SLN Caregiving Resources page
Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information support and tools to advocate with their brothers and sisters and to promote the issues important to us and our entire families. Hello, and welcome to the sibling Leadership Network Podcast. Today we will be talking about juggling multiple caregiving roles. Today, I'm joined by Emily hall with the sibling Support Project, and Megan Burke of the University of Illinois. Hello, and thank you for joining me today.
Emily Holl:Hey, Chris, thanks for having us.
Meghan Burke:Yeah, excited to be here.
Chris Berstler:Can I first ask you guys to do a brief introduction tell us about your current work and what led you down the path you're on now.
Meghan Burke:My name is Meghan Burke. I'm a professor of special education at the University of Illinois at Urbana Champaign. My research is kind of two pronged. It looks at how families navigate and access services for their family members with disabilities. And then more relevant to this particular podcast how siblings transition to caregiving roles, I would say I got interested because I'm a sibling myself. So I have a brother named Ryan, who's 27. And he has Down syndrome. And so just personally, all of these issues kind of mattered to me, I also have a son with a disability. So kind of seeing it from the parents side as well now as in addition to the sibling side.
Emily Holl:Great. And I'm Emily Holl, director of the sibling support project. First of all, I'm super excited to be on a pod with Dr. Megan Burke. I'm a very big fan of your work. And just really exciting to be here. So so at the sibling Support Project, we are the first national program in the United States dedicated entirely to supporting brothers and sisters of people with special developmental health and mental health concerns. Our founder is the incomparable Don Meyer, who created this amazing thing called a SIP shop back in 1982. And really was a pioneer to forge ahead with other kinds of sibling support services first for siblings of all ages. And so I'm very excited to be able to continue his work also as a sibling. Like Megan, I'm a sibling and the work that we do is near and dear to my heart. And we we offer. In addition to SIB shops, we have online groups for siblings of all ages. And this topic comes up a lot particularly in SIB net, which is our online community for adult siblings. And believe it or not, it also comes up in our in our group for 20 Something siblings called sib 20. And then, you know, even some some teenagers are thinking about this stuff in terms of the future what the future holds for their role as a caregiver and how they will juggle those responsibilities. So that's our teen group, which is called SIB teen. So this is a topic that is really on a lot of siblings minds.
Chris Berstler:So what does juggling multiple caregiving roles mean? And how does this relate in particular to siblings?
Meghan Burke:And what does it mean? So it generally means kind of juggling more than one caregiving role. For siblings, specifically, siblings are often referred to as like the club sandwich generation, which means that at some point, it may be very likely that their caregiving not only for their aging parents, but also for their brother or sister with a disability as well as for any children of their own. And so that is kind of unique. I mean, you see, among the general population that people often as they age, they may care for their aging parents, right. And they may care hopefully, for their own children if they have any. Um, so they have that kind of dual roles, but siblings have this kind of additional layer and the club sandwich label. also potentially caregiving for their brother or sister with disability, and really potentially at the same time pursuing all those different caregiving responsibilities.
Emily Holl:Yeah, it's really a nod to the baby boomers, right, who were the first the first generation to be coined the sandwich generation because they were really the first generation that sociologists and other people who are interested in, in social studies of various sorts, coined this term to describe the baby boomers who were caring for aging parents and children and sort of the pressures of caring for two generations. And we're lucky us siblings, we get that extra layer of responsibility I consider the that the bacon you know, if you're if we're looking at a club sandwich, right, it's our our adult brothers and sisters. And I have to say, you know, with all the that we talked about with the juggling and caregiving roles, One of the layers that we don't talk about often enough is caring for ourselves, right? That's self care that we absolutely need in order to be able to care for everyone else. So if I could add a layer maybe of lettuce, maybe I don't know, it would be that self care for ourselves.
Chris Berstler:Can you describe your own experiences with juggling multiple caregiving roles?
Emily Holl:So as I mentioned, before, I I have a brother, who I'm a sibling, I have a brother who has intellectual disabilities, He's two years older than I am. And a number of years ago, this is more than a decade ago, he approached me at one point, and he said he was living with our parents. And he said, you know, Emily, when mom and dad are gone, I'm not going to be able to stay in this house by myself. Right? And it was kind of this. And I was like, Oh, we're having that conversation. Okay, great, let's, let's do that. And I was, I was honestly quite grateful that he initiated this conversation, because it honestly was a conversation that we had to have as a family. And it was really my brother, Peter, who was kind of driving the bus, as it should be, you know, to the greatest extent possible. And so it really forced me to look at my role, my expectations of what my role was going to be, and align those expectations with what our parents wanted, and what Peter wanted. And so I had always assumed that Peter would live with me, and we would live happily ever after, or, you know, and drive each other completely bonkers in the process, right simultaneously. And when we started to have that conversation, as a family, he let me know, in no uncertain terms, very kindly, very polite about it, but that he had no desire to live with me. And this is something that I didn't know, we had never talked about it, I just assumed. And so we really had to think about options as a family. And so luckily, I worked for an organization at that time in New York City. And I could turn to my colleagues to help me navigate a very complex system, to get my brother on the waiting list for residential services, to help me understand what we needed to provide for documentation, you know, to go through that entire process. And so my role today, as a caregiver for my brother, it looks a lot different than I expected it to, you know, 1520 years ago. And, and I am still his sort of primary person, his primary contact, and my mother passed away, my dad just turned 85. And he's in, so So health, but he's not in a position to care for my brother, really. So I'm the person who attends his ISP meetings, I talk with his employer when that's needed. And when, when when he lets me when Peter, you know, thinks that that's a good idea. I manage kind of his weekly, whatever comes up, you know, I'm his point person. And I do that from afar. You know, I'm in Seattle, Washington, with the sibling Support Project. And he's in Brooklyn, New York. And so. So there's that element. And I'm also looking out for my dad, as I speak to you right now, my dad is in the hospital, he just went into the hospital over the weekend. And so I'm trying to manage this from a distance. Also, my dad's in Florida, retired to Florida. And I have two little boys who are nine and almost six. I have a career that I love with a sibling Support Project. And I have a spouse who's very thankfully patient, and very helpful. But it really, you know, it takes a village, I have a network of great friends too, because we don't have a lot of family here. But to help me manage all of that juggling. It really does. It takes a village. So I don't know if I answered your question, Chris. But it's kind of a big hot mess, I guess you could say, you know, at any given time, and thankfully, like my dad's in the hospital, but my brother's doing really well right now. So it literally is, you know, however, the scales balanced at any given time, you know, and the kids are okay, and we're healthy knock on wood. You know, it's just kind of a day to day by day thing.
Chris Berstler:Yeah, you definitely answered that question. Thank you very much for sharing.
Emily Holl:I don't know if Megan wants to take a turn to answer that one. I don't know. I don't know if you can compete with my hot mess over here. But
Meghan Burke:he does not sound like a hot mess. You sound like my superhero. I mean, the way you're able to coordinate all of that you should probably teach a class about how to do those things. From a distance from like the greatest possible distance you could be at within the continental states.
Emily Holl:Literally, literally look at a map folks, Seattle and somewhere near outside of Orlando, Florida. Yeah. But what I
Meghan Burke:like about to tease it out, is that caregiving, I think, traditionally we really thought about it to mean that your brother or sister would live with you. And that was really what we were thinking is going to happen. And for the most part, it doesn't really seem to be what's happening with a lot of people with disabilities, right? And so, um, I like this idea of fleshing out the term caregiving and even questioning like is caregiving the right term, right thing, sometimes people think of caregiving, and they think it means the act of providing actual physical, tangible assistance. But all of the things that Emily just mentioned, like service coordination, and talking to employers, providing companionship, future planning, all of those are during caregiving responsibilities, and all of those feed into different tasks that you'd be doing at different times. And so from a research perspective, we really don't think through those things. And from like, a real support perspective, I think, you know, targeted support may vary depending on what kind of caregiving are you doing at a given time knowing that it may change, right? You know, there in my family, there are five siblings, so my brother is number four, or five, and I'm the oldest, and he right now lives at home with my parents, and is very happy and does not want to move out. And I think I always thought he would live with me, and my siblings thought maybe he would live with them, he doesn't want to live with any of us, actually, is not a big fan of little kids and a few of us have little kids he does, he definitely doesn't want to live with us until they get older. Um, but the caregiving I'm doing right now is maybe helping my parents find certain services for him kind of keeping tabs on that, maybe doing some respite kind of things for him. But I also have two kids of my own, I'm pregnant right now with my third. So we're kind of busy with our own family, you know, doing caregiving that way. And my parents, thankfully not gonna let her in very good health. So it kind of shows you the different dichotomies of like where you could be at right across the lifespan, and how things can change and the unpredictable nature of all of this.
Chris Berstler:Absolutely. Thank you. And congrats on the new baby. Thanks. How has the pandemic impacted the lives of people juggling multiple caregiving roles?
Emily Holl:It's funny, I was just talking with a friend about this the other day, I think, I think that the pandemic has really just amplified, you know, all of our family dynamics, from from those underneath our own roofs, to family dynamics with extended family, and the pressures of caregiving, I think have just been magnified. And we were, you know, we were talking about how, you know, self care really has kind of gone out the window for many of us. Because, you know, some of us that last year, we were homeschooling kids, you know, we were helping them with remote learning, we were trying to manage our careers in this new normal, you know, this unprecedented situation, and worrying about maybe our aging parents and keeping them safe. You know, I spent a lot of time first of all, lecturing my dad about why he needs to, yes, you do need to wear a mask, right? Yes, every time you go into the store, and which is funny because the tables kind of turn right like all the times that he and my mom like told me that make sure I'm wearing a coat and a scarf and a hat when I go outside, right? He needs to know where he's masked when he goes to the store, scheduling, you know, his vaccines online, my dad does not really do anything online, he might surf surf around on his iPad, but you know, scheduling a COVID vaccine is like out of the question. So just sort of, you know, I think just navigating this really sort of unprecedented time, has amplified all of our responsibilities and roles as caregivers for the various layers of people who rely upon us.
Meghan Burke:Yeah, and I would just echo the amplification of, you know, for a lot of caregivers, you lost a lot of your formal services and supports, right, because there's a shortage in the workforce, people weren't coming into the home, you weren't getting your respite, all of those things that you may relied on, kind of stopped a lot during the pandemic. And so you lost access to that, which then amplified your caregiving responsibilities. And of course, really, I think, showed a lot more of the equity issues in caregiving, right. So definitely, you know, females being hit much harder, with kind of be more likely to pursue caregiving roles and then taking a bigger hit because of the pandemic. And then people who are from marginalized or different racial and ethnic backgrounds also being hit harder people who are from low SES or socioeconomic backgrounds being hit harder. There's definitely differentiation, kind of in response to all of those things, but overall, it has definitely amplified the caregiving responsibilities.
Emily Holl:For sure, and I think also for people with disabilities for our siblings, right and this is something again, we're hearing a lot lot we've been hearing a lot in our, in our sibling communities, that the pandemic has really hit their brothers and sisters pretty hard in terms of again, not, as Megan said, not having access to the services that they, you know, have come to rely upon. Not maybe really having great supports in terms of understanding the pandemic and what's going on, and why we can't go to work or day program or, you know, out to the store, or whatever the situation might be. And many, many siblings are struggling with how to best support their brothers and sisters with disabilities. Especially if they're doing that, you know, now on a screen, which for some people disabilities, like really is not an easy option.
Chris Berstler:What advice or resources can you share for anyone listening who is struggling with their own juggling act,
Emily Holl:you know, for siblings, in particular, I would invite anyone who was not already part of our online communities to come in and join the family. So that SIB nets for adults sub 20 for 20 Somethings and 17 for teenagers, because, you know, this discussion is, is quite rich in all of those spaces. And it's a space where siblings are sharing with with very much honesty, and I think courage, you know, to be truthful, sharing the challenges of juggling these multiple responsibilities, and also not not only just validating, which by the way goes, I think such a long way. validation, I think is is a really powerful tool and really powerful way to support anyone, especially siblings. So validation, for sure. And also sort of allowing people encouraging people to allow themselves the grace of not carrying the world on their shoulders all the time, every day, right, that we can support each other and encourage each other, that it's okay to have boundaries, to not be everything to everyone at all times. It is essential to take time for ourselves and to care for ourselves. We always talk about that metaphor, that when you're on the plane, and it's going down, and I think a lot of us feel like we're on that plane that's going down right now, right? Because the pandemic and so many other things, we have to put on our own oxygen mask first, before we can help our dependents right, who are sitting next to us who need their own oxygen mask, we need to take care of ourselves first. Or else we're not going to be able to play these these multiple caregiving roles. And so I am so grateful that these online communities are spaces where where those conversations and that kind of encouragement is really happening.
Meghan Burke:My only other thought is I mean, the sibling leadership network itself, right is this huge support and just meeting other siblings, whether you go to the conference, or you're involved in your state chapter, that itself can be very powerful support is just that peer support of knowing that somebody else is been in a similar situation.
Chris Berstler:Thanks. Thank you very much. Caregivers often talk about being prepared and organized as strategies for successfully quote unquote, managing at all. But of course, you can't plan for everything. There are always unexpected events. Any person, you as a sibling, your parent, your sibling, or your child might unexpectedly get sick or encounter a setback or crisis might arise. That requires immediate decision making. How do you manage the unexpected when you have multiple caregiving roles?
Emily Holl:Yeah, I personally love this question. Because even the most organized best intentions of us siblings are not. You know, I think that we learned certainly, if not sooner, we have learned we learned by 2020 that even the best is best laid plans sometimes are not carried out. Right. Many of us had plans for 2020 that the universe quickly shut down when when COVID happened. And so we believe around here anyway, that a really big key to juggling those caregiving responsibilities is to be flexible, and to to to consider planning and kind of an ongoing and fluid way. Right that, that preparing for the for the unexpected, the or maybe the expected preparing for what we think our responsibilities are going to be, really requires a great degree of fluidity and the ability to roll with the punches and to say, All right, well, that did not exactly play out the way I thought it was going to. And now we have to continue the conversation and put our heads together and go to plan B and I think that's where having a really robust support network is so important. And sometimes that's our family, a lot of times, maybe that's our friends, you know, whoever is in your, your village, your support network, I think it's really important to make sure that those conversations are ongoing. So it's not like, Okay, here's our plan, we're going to set it in stone. And that's going to be the plan. Because the truth is that things change. And I think if you have a really good open communication system, and you have set that precedent, you know, that we talk about these things. And when things fall apart, we put our heads together, and we, and put one foot in front of the other and try to figure something else out. I think that also relieves so much of the pressure of feeling like we have to get it right all the time. And we have to have all the answers all the time. Because the truth is, it's impossible, you know, it's impossible to first of all predict what's going to happen. But it's impossible to have all the answers I think we can make the best decisions, we can with the information that we have at the given time. And and move forward. Again, one foot in front of the other, I think baby steps like let's, let's set really reasonable expectations for ourselves.
Meghan Burke:I think what tends to happen, especially with siblings, as we see that the oldest female sibling is tends to be the main caregiver. And so actually, what we've seen in some of our research is that caregiving responsibilities are not shared. Even if there's one sibling, five siblings, 11 siblings, we're not sharing and divvying up those different tasks, we're just loading them onto one person can go back to the self care issue, right? And like expectations, like is that really realistic to put the world on one person? No, it's not. And so when you're planning, the idea is, you know, yes, things can change. And the more people you have involved in the planning, the better off you're going to be, because then you're not relying on one person to kind of execute those plans. And you have backups, and you have people who are in on the plan and know what's going on. And then you know, more people can kind of be flexible and go along with things. As things change.
Chris Berstler:Would you have any advice for any maybe younger sibling who is looking to the future and just kind of dreading the possibility of juggling multiple caregiving roles?
Emily Holl:Yeah, I would start with have a conversation. And and this is probably one of the hardest conversations to have for siblings to have with their parents and with their families. And ideally, with the sibling with a disability. As I said, in my case, I was so grateful that my brother brought it up. Because it was like, Okay, it's not me, but it's on the table. And now we all have to talk about it. Right? You know, I, I really think that not carrying the weight of this, in some cases, kind of self imposed expectation. And that's not that's not true of all families. In some cases, siblings have very direct and open pressure from parents that yes, this, by the way, is going to be your responsibility. And, and that's just the way we're going to do things. But there still aren't a lot of conversations about well, what does that mean? What information do I need to have? What skills and abilities do I bring to the equation that I can help support my sibling? And what are areas that that I really would be overwhelmed that I'm not prepared to take on? Right? I said very clearly, you do not want me managing my brother's finances. Because you know, if you've ever seen me try to balance a checkbook. You know, I'm not your person. Okay? Like that's, but there are, you know, other things, I am a pretty effective communicator. So if there's an issue going on with one of his staff, right, I can pretty effectively get to the bottom of what's going on and help come up with a resolution that works for my brother and for everyone else. So it's really I think, starting to have those conversations about what those responsibilities are going to look like. And to be able to have a voice in those conversations to say, this is what I'm willing to do. This is what I'm able to do. This is what I'm not sure about. Right? These are my worries and my concerns. You know, I'm not sure if I'm going to be able to live with my brother because of XY and Z. I think once we can start having those conversations and moving our worries from our heads and our hearts, into conversations and communication with other people who are part of the picture. It is a tremendous relief.
Meghan Burke:Yeah, I think to add to that, in addition to having conversation, I think what we've seen in one of our research studies, we had a student who Chung and Lee, who's now in South Korea, she designed a future planning training for siblings and we opened it up to siblings who are 18 years or older. And we were just like, let's see what siblings come. It was, I think six sessions. And it was interesting to see that nearly all of the siblings of not all of them were female, not surprising, but also they were all in their early mid to late 20s. And so they were kind of like just finished college, maybe going to graduate school maybe engaged starting their careers. So they're not at the point of caregiving. But they know it's coming right there. Exactly. You're talking about 20 Somethings who know that this is coming and wanting to prepare themselves. And one of the big things in addition to having this conversation with your family, that we see siblings being really worried about is how am I going to learn everything my parents know about services? How am I going to figure this out? Katie Arnold gives this nice example of like, you know, your parents have learned the stuff through 2030 4050 years of advocacy and experience. And then without any planning, you just transitioned into that role. And huge not, it's like falling off a cliff, you just have no idea where to start where to begin. And so it was really interesting to see these 20 something year old saying, Here's a piece of this, that I can learn through this training, I can learn about SSI, I can learn about Medicaid waivers, I can figure out what my brother's entitled to, and start that way and like so it's his baby steps, right? Like take off a little piece of it, of what you can handle right now. Knowing that services change when you when you actually fulfill that role, but at least you're you're starting to kind of chip away at what is your real fear here. And you're kind of taking it into your own hands by learning by arming yourself with information.
Emily Holl:Yeah, and I have to give a little plug to the sibling survival guide here, too. This is a book that we put together a number of years ago, edited by Don Meyer and myself. And this was designed to be kind of a one stop information source for siblings, you know, everything from common childhood issues that siblings have, you know, experienced, right through navigating the service system funding sources, right up through, you know, end of life concerns, you know, kind of everything in between. And the way we generated the chapters and the topics for this book, we did a national survey of siblings, and we basically said, what keeps you up at night, right? Like, what, what are the things that you need to know more about, and per Megan's point, this navigating the service system, understanding waivers, understanding what supports were available was a huge, huge topic that siblings felt that they desperately needed to know more about. So. So little, just plug for the sibling Survival Guide, because we did ask X sibling experts who are very knowledgeable about these different areas, to contribute and to write chapters about these topics. So kind of a nice little resource for folks to know about.
Chris Berstler:Definitely a very important read in my own personal journey. So thank you, statistically speaking, women are more likely to take on a caregiver role for their sibling than men, as women who have taken on multiple caregiving roles yourselves, what factors do you think influenced this?
Emily Holl:I think that, you know, much the same way that daughters are, you know, historically, the folks who care for aging parents, it is sisters, adult sisters, who often step in as caregivers for their brothers and sisters older, that hold or later in life. And it's interesting, Megan, that you mentioned, you know, this idea that even when there are multiple siblings, it comes down to, you know, one, I always thought, Well, gosh, if my parents had just had more kids, you know, we could just divvy it all up like that would have been really great of them. And then as I started to do more work in this field and meet more siblings and read more research and hear more stories, I realized, oh, no, no, it's really just usually one, regardless of how many siblings there are. So and I think that there are probably, I think there's probably some research that that tells us sort of like who in the Family Constellation is more likely to, you know, be closest to the sibling and take on those caregiving roles, although that's not true of every family, I think cultural influences and just other things that impact family dynamics, my my sort of guide that that process of who winds up being the caregiver, I think that for me, personally, for five and only, you know, I'm Peters only sister, so it was going to come down to me anyhow. And I have to say that I think that I was always very open to being a caregiver for my brother with my brother. I don't know if you can say with but, you know, to the greatest extent possible in partnership with him. Because growing up my parents never put pressure on me to serve that role. Right. In fact, I remember when we were younger, we were in grade school. Well, we were, maybe we were in middle school or probably a middle school, because I remember we were latchkey kids. So this is going to date me. Okay. I'm a gen x star. So we were latchkey kids. So we would be home alone after school. And I decided that like I was going to be in charge of Peter, you know, what I would make sure that he had, you know, a snack and not too much of a snack, and not too much, you know, Pepsi, or like, whatever it was. And my mom caught wind of the fact that I was doing this because I would give her a little report. And she would say, Emily, you know, by the way, you're the sister, right? You're not the mom, you got that right, she kind of very quickly put me in my place, and helped me understand that that was not my responsibility. And so I think the fact that I was always given the space to go out and do my own thing, to explore sports, or, you know, drama, or music, or whatever it was that I wanted to explore. To figure out who I was, as an individual, I think that really helped me want to decide to play a supportive role in my brother's life, I think it was directly related to the fact that that pressure was not placed upon me. So in terms of Now, assuming these these multiple caregiving roles, juggling all of these roles, I think that I have that there's that sort of footprint, already embedded in my brain of being able to care for myself, and be being able to consider my own needs in this constellation of caregiving for other people, doesn't mean I always do it well. Okay, you can ask any of my friends about that, or siblings after all, so self care is not the first thing we think of. But, but I do think that it really helps us manage when we can look to self care and self preservation first.
Meghan Burke:And the only thing I'll kind of piggyback on is, in the research, yes, we harp on this idea that females are more likely to be the caregivers, we know that we talk about it a lot. But what's kind of lesser talked about are people like Emily, who are the only other option, or if you're the only other option that we've found is like, then there it doesn't matter what gender you are, or identify with, like you are it, you know, and so those are siblings, too, that we really need to be looking at and thinking through, like, what are the differences there? What are what are the issues that they may creating, even though we know certain caregiving responsibilities don't tend to get diffused across people? Like, are there different interventions or supports that we should be offering to people who are the only other sibling without a disability in the family, and therefore kind of by default, might be the caregiving sibling or feel the pressure to be the caregiving sibling, there's, there's lots more to do there. But it is something a variable, a predictor that we don't talk as much about, but I think really, really matters just as much as gender does.
Emily Holl:For sure, and and when we work with young young siblings in sub shops, so we're talking about primarily school aged siblings, we are trying very intentionally to create that idea of support, like early on, and create this space where siblings can not only explore who they are and what they want in life, but to also explore this idea of, you know, maybe taking on roles and responsibilities later in life as caregivers, and what that might look like and what their fears are around that, what they might be looking forward to around that. You know, some siblings say, like, I can't wait to live with my sibling, we get older, you know, because I love living with him. Now, you know, or other siblings say no things like I can't wait to have my own space, like I need to, I need to be away from it, especially, you know, if there are some behaviors that might be, you know, hard to be around. So, so, I agree, I think it's really important to consider when you're the only show in town, as I am, and as so many other siblings are, you know, what can we do to help siblings navigate that, but also kind of find their voice along the way? Because let's face it, if we are the only other sibling, and ultimately we are going to become the caregiver of our brother or sister, whatever that means, you know, however that looks and it doesn't. It looks in a number of different ways that doesn't necessarily mean one thing. But whatever that means, whatever that looks like if we are going to become a caregiver for our brother and sister. How much more empowering is it to take on that role if we have if we have followed this path, leading up to it being able to express our voice and our preferences and our concerns, and to have some say in the decisions sort of leading up to that point, how much more money powering is at how much more willing are we going to be able to step into that role. If we feel some real ownership and some that consideration for our needs has been made, then if it's just an expectation that has been sort of, you know, put upon us without much discussion, without much consideration of really, every really, really every day, what is that going to look like? What is that going to look like? If I'm a caregiver for my brother? Right, if we've never had a conversation about that, and it seems to me that no one especially cares how it's going to impact me in the future? How am I gonna feel about taking on that role? As opposed to, you know, having really been part of the process leading up to it? It's big, big, big difference?
Chris Berstler:Absolutely. Can you talk to the relationship that your kids have with your sibling? Are there are there any conversations that you have with your children about your role in your siblings lives,
Emily Holl:I can start you know, as a caregiver from afar, my kids have only really met my brother, you know, a handful of times, really. And when we we lived in Brooklyn, and much closer to my brother and his girlfriend, they would spend a lot of time with us when he was a baby. And they would, you know, hold him and they just thought he was like the cutest thing ever. And I was like, great, do you want to change a diaper and that, you know, that they were really too interested in that. But you know, I think that's one of the real challenges of living so far away. He, they have come to visit us. But of course, with the pandemic, that has not been possible recently. But we talk on the phone. And, you know, my kids talk to uncle Peter. And we have had conversations, I think, really, mostly through conversations about my work with siblings, I can always kind of draw upon my experiences with Peter, to help them kind of understand the work that we do with siblings. And so they know that the Peter has a disability, we've talked about what a disability is. So we try to talk about disability within that sort of spectrum of things. Things that we're good at, and not so good at. And they, I have to say I think that they have a really, you know, for ages nine and almost six, I think that they have a really solid understanding and appreciation, you know, because they're the kids who, who do notice when you know, the little girl down the street with Down syndrome is being teased by one of the neighbors, you know, and they don't like it and they say something about it. And so I really have to thank my brother for that because he's given all of us this sort of lens through which we view the world.
Meghan Burke:I feel the same way. I feel like we only live two hours from my parents and my brother. So thankfully, we get to see them often. And Rogen is very excited always to see Uncle Ryan, Uncle Ryan does not feel the same terms of Brogan. Ryan in my parents house is like the basement as his own domain. And so when any of his nieces or nephews want to go down there, he's not a fan of them going down there and messing up his stuff and playing with his things and all of that. So it's not it's not equally reciprocal relationship. But I think they, it's really important to me that they have relationships with him and I see it with my niece was a little bit older than my son, her relationship with my brother as her uncle Ryan, and then her relationship with Rogen, who's now her cousin who has a disability. And even when she was really little, and Rogen wasn't speaking much yet, we were trying to figure out what Rogen wanted for dinner. And she was like, I'll figure it out. And she drew pictures of like macaroni and cheese, pizza, pasta, and then she was like, Rogen, point two, which one you want. And I'm like, this is exactly what I teach my undergrads, there's rules, like, and she figured it out at like, six, you know, it's just mind boggling to me. How these experiences have shaped her in ways that you know, she just thinks it's so normal. And that was like, just the right thing to do and just jumped in there and took charge and gives me a lot of hope for the future that I think, you know, we have people like that who are getting exposed to people with different support needs, and just learn how to adapt and they think that's just the way of the world. It's like, Yeah, that should be the way. That's what we're, that's what we're going for. So
Chris Berstler:that's amazing. Thank you very much, both of you for sharing that. Do you have any resources to share for any sibling caregivers in the bipoc community who are listening, or anybody in the LGBTQIA plus community?
Emily Holl:Yeah, so we at the sibling Support Project in partnership with the sibling Leadership Network, and an organization called Special Needs siblings. We launched a series of bipoc sibling roundtables last year, there were four of them. And we, we wanted to recognize in a, in a sort of formal way, the fact that the sibling support space, you know, up to that point, you know, really hasn't been as diverse as we've wanted it to be, and, and probably not as welcoming to siblings of color, as we, as we hope. And I think for many years, we've had these conversations about, you know, how do we make the sibling support community more inclusive? And how do we, you know, how do we extend an invitation to siblings who don't look like us to be part of these conversations? And, you know, if, if we are only having these conversations with siblings who look like us and white siblings, you know, they're not going to go very far. And so we wanted to very intentionally reach out to bipoc siblings and and say, you know, what, we recognize that we don't hear enough from bipoc siblings about their experiences, their perspectives, their insights, we have not discussed enough considered enough the intersection of race and disability and how that impacts our loved ones, how that impacts us. We want to take this opportunity to step aside and to create that space for bipoc siblings to share their stories. And so this series of roundtables we, it was very, they were very well attended, we did one pretty much quarterly in 2021. And, you know, just the insights, and the stories that were shared in that space, from siblings really have so many different perspectives and experiences. Yet, with so many of the similar underlying themes that happen in many of our lives as siblings, it was so gratifying to be able to, to learn and to hear from siblings who were sharing their story. So, so if anyone is interested, first of all, please know that, you know, we are very intentionally, very intentionally working with partners from the bipoc community to ensure that this space is more inclusive, right? And so if anyone's interested in watching those roundtables, they are all recorded. They are on the sibling Support Project website on our blog, where it says news. I'm not sure if the SLN has posted them somewhere as well, probably yes, thumbs up, I'm sure Chris can tell us where they exist on the SLN. In SLN, social or on the website. So that's one thing. And then I think, again, I'm going to turn to communication, I think a lot of a lot of what we need to do is create the space for bipoc siblings to be part of the sibling Leadership Network. One of the beautiful things that resulted from this bipoc Roundtable series is that I think we had more siblings of color than ever before, not only attend the SLN conference last summer, but present, right, share their expertise, which was amazing. And so I think if you are a sibling of color, wondering if this is a space for you, I think the answer is absolutely. And we recognize why and how that may not have felt that way for a long time. And we you know, we want that to change. And we want that to change in partnership with with bipoc sibling. So I think joining the sibling Leadership Network is is a wonderful start, please join our Facebook groups. We have a lot of siblings from really all over the English speaking world right now. And so, you know, we definitely want to encourage siblings of color to, to be in these spaces as well not just be in them, but really be of them and to and to, to share their stories and and build community with us. Yeah, and
Meghan Burke:I'll just echo the same points from a research standpoint is that now in most of the research, it usually reflects white, well educated female heterosexual siblings who are willing to participate in research, and usually have pretty positive relationships with their brothers and sisters. And so in lots of ways that sample is not generalizable. Right race and ethnicity obviously be one of those ways, but there are lots of ways that that sample really is not telling the whole story and is not representative We've all siblings, and it should make us question do we really know what we think we know, based on the research, given that it's only representing for the most part, this very small sample? And I think, you know, researchers in general, hopefully, are trying to think about how do we get more representative samples? What are the problems with the methods that we're using that were not able to recruit more representative samples? Why are we not able to get at that, because really, at this point, nobody should be doing research that's not culturally responsive. And that's really not representative, especially if people that we know face more systemic barriers in accessing services and navigating these issues and issues of equity. So I'm hoping moving forward that the research will catch up to that and start to get a little bit more representative through a lot of the things that Emily mentioned, including community based partnerships
Chris Berstler:for any family or friends or sibling supporters who are listening. How would you say they can help alleviate some of the stress and burnout associated with juggling multiple caregiving roles?
Emily Holl:Yeah, I'm going to go back to self care on that one. And it's something that we siblings tend to be really terrible at myself included. And I think we need to really consider what self care what really is self care, right. And it's, you know, it's not just bubble baths. And although bubble baths are nice, but it's, you know, it's not just kind of the the surface things that we can do that to be nice to ourselves, but to really look at how we can maybe delegate some of our our caregiving responsibilities, some of our responsibilities around house some of our responsibilities with our families? How can we let ourselves off the hook and give ourselves allow ourselves some grace, right. I think that that's really, really important to recognize that, as Megan said earlier, you know, is it really realistic for all of this to fall on one person? And and what is going to be the cost of that down the line? And how can we make some changes, to allow ourselves the time and space to really take care of ourselves? And again, I think, I think that means looking at our roles and what is realistic for us to do, and not beating ourselves up when we can't accomplish it all? You know, I decided, personally, there are some nights where I'm like, You know what, I'm not going to fold the laundry tonight, because I am going to explode if I do one more thing today. Right? And it's okay, I can I can sit and read a book for an hour, right? And the laundry is still gonna be there. I promise it will. Or sometimes it's asking the kids took to help fold the laundry, right? They kind of like that it looks a little weird. But who cares? It's their clothes. Right? So I think delegation and and looking and maybe adjusting our expectations is a really important form of self care.
Meghan Burke:When I think I think in terms of delegation, something we haven't hit on our siblings in law. Now we're starting to see more and more research come out about siblings and law and our spouses and like the roles that they play, marrying into the situation, right, knowing that maybe caregiving is on the horizon. Not having been exposed to that before, right, it's different when you grow up with it. These people are marrying into it. Right? Um, and so really thinking through like, I don't know that I ever thought beyond that I was a package deal with Brian and my spouse would have to love Ryan as much as I would and like be able to take on caregiving to think through like, oh, like, my husband has a very good relationship with my brother. And it's their own relationship, right? And I never really thought through, like, what would that look like? And what would they enjoy doing together and my brother in law would be the same way like he loves hanging out with Brian and Ryan, I think at this point, very much prefers his brothers in law to his sister's, like he like likes, the guy time any any likes, that they they go out and they go out to breakfast, or, you know, go out and order pizza, and he doesn't have a sister there who's like, don't eat that. Too much food, you know, he likes that he gets to, to do those things. And I think it's really, it's nice when it's not all on you. And you get to witness your brother or your sibling in a role that's different. And does your spouse kind of step into a different role as well? I just think it's, it's something that's a real, we talk about the challenges so often, but it's a real, it's a real advantage to be able to get to watch those relationships unfold. And so I think we should be utilizing them more, as much as possible.
Chris Berstler:Lastly, what parting words of encouragement might you have to share with any listeners who have will be or currently juggling multiple caregiving roles?
Emily Holl:To kind of echo what I said earlier? I think that we all have to have the courage to take care of ourselves and and maybe that sounds dramatic or You know, not quite accurate. But I think for many of us siblings, it really is a matter of having the courage to kind of let go a little bit to let go of this idea that it's our responsibility to take care of everyone all the time, and to allow ourselves to live our lives and to enjoy our lives to the greatest extent possible. You know, the reality is we have caregiving responsibilities that, that that are real and that aren't going away, right, like, my kids are not going to miraculously dress themselves feed themselves and get themselves to school every morning, at least not at this point, they're still too young. So those are things that I have to do. There are times when my brother needs a reality check. And he needs someone who knows him and loves him and understands him to step in. And maybe give him some feedback on a situation that he has not considered right. That maybe he doesn't want to hear first from the nagging sister. But, but, but who understands also that it's coming from a good place. You know, those are things that that have to be done, you know, aging parents have needs that you have to you have to attend to. But you also have to take care of yourself in the midst of all of that. And so my words of encouragement are, you can do this, but you don't have to do it alone. Right, like Do not attempt this at home. This is like, when they show that on the commercial, the guy's like driving the motorcycle through the shopping mall, or whatever. It's like, you know, professional driver, do not attempt this at home. That's what I would say like, you know, don't try to do this on your own. It's okay to ask for help. And the people who, who love us, and who are part of our lives, they want to see us including our siblings, by the way, they want to see us happy they want to see us, you know, enjoying our lives to the greatest extent possible. And if we just have the courage to take care of ourselves, and to ask for help when we need it. There's a much greater possibility of that.
Meghan Burke:Yeah, I agree with the support. And I also think, for the most part, and I hope, I don't regret saying this, but things keep getting better, right? Like we have more people disabilities living longer living in the community being employed. I mean, my brother's 27, and he's employed five days a week, like 20 years ago, maybe even 10 years ago, you wouldn't see that for a person with Down syndrome, right? So we're seeing more supports getting in place, we're seeing people with disabilities, having the self determination and removing systemic barriers that they live the life they want to live. And so you know, hopefully, if you're, if you're in your 20s Now, if you're a teenager now, and you're nervous about what things are gonna look like, I'm hopeful the next decade, things are just gonna continue to improve for our brothers and sisters. And then, you know, kind of by default for us as well.
Chris Berstler:Awesome. Thank you both so much for just taking the time to be with me today and share with everyone your experiences and resources. Speaking of resources, I want to mention that all the resources that have been mentioned during this podcast will be in the description. And you can always check out resources, including caregiving resources and COVID-19 resources on our new and improved SLN website sibling leadership.org. I also want to mention that on January 24, Emily will be leading our very new monthly series called symposiums, they are one hour interactive forums for sibling support. And this month, we'll be juggling multiple caregiving roles as well. So we look forward to seeing you there. That link for registration will be in the description and on our website. So thank you both so very much. It's been a pleasure hanging out and talking.
Emily Holl:Thanks so much, Chris. Thanks, Megan. Thank you so good to see you.
Chris Berstler:Find resources, tools and information about the sibling experience on sibling leadership.org. The sibling Leadership Network is a nonprofit and we rely on support from our audience. Find the donation button on our homepage and contribute to the ever growing sibling movement.