“Siblings tend to know their brothers and sisters in ways that are just different from the ways parents know their children. And siblings tend to have kind of an unsentimental and accurate view of some of the strengths of their brothers and sisters.”



Episode 11: Supporting & Empowering Siblings with Emily Holl

In Episode 11 of Focus on the Future, learn about the role that siblings play in future planning. Emily Holl of the Sibling Support Project joins us to discuss how siblings can be empowered to be a part of planning for the future. Siblings know each other in ways that parents, teachers, doctors, therapists, and others do not. Their ideas and input are a powerful piece of making plans for the future alongside the sibling with a disability. In this episode, learn what support siblings crave when they think about stepping into a caregiver role over time.

About Emily Holl

Emily Holl is the Director of the Sibling Support Project. Emily is a social worker, writer, trainer, and sibling. Over the past 16 years, she has provided workshops, trainings, and groups for siblings, families, and individuals with disabilities. She has written about her own sibling experiences in blogs, magazines, and books, such as Thicker Than Water. Emily was an author and co-editor of the Sibling Survival Guide, Indispensable information for Adult Brothers and Sisters of People with Disabilities, published by Woodbine House in 2014.

Emily earned a Bachelor of Arts from the University of Massachusetts, a master of fine arts from Columbia University, and a master of social work from Hunter College at the City University of New York. Emily and her husband, Tom, reside in Greater Seattle and have two young sons. Emily’s the primary family support for her brother, and she is grateful for the village of people who help. She can be reached at emilyholl@siblingsupport.org.

About Focus on the Future

Focus on the Future is a podcast for caregivers and families supporting people with disabilities. In each episode, a conversation about the journey of discovering our best life and how to achieve it. While exploring legal, financial, and quality of life structures, Focus on the Future aims to get back to what matters most: living a fulfilling and meaningful life that is defined by each individual person. Learn more at arcminnesota.org/podcast.

Episode 11 Transcript


00:15 [Allycia Wolff] Welcome to Focus on the Future, a future planning podcast for caregivers and families supporting people with disabilities. Focus on the Future is a podcast of The Arc Minnesota, a nonprofit organization advocating for folks with intellectual and developmental disabilities. My name is Allycia Wolff. I’m the host and producer of this podcast, and an advocate here at The Arc Minnesota. In this week’s episode, we are going to be talking with Emily Holl about sibling support and how to care for siblings of people with disabilities. She has a sibling. His name is Peter, who she supports and is also the Director of the Sibling Support Project. So today we’re gonna hear from her and her expertise in how to care for siblings of people with disabilities. Thanks for joining.

01:06 [Allycia Wolff] Emily Holl is the director of the Sibling Support Project. Emily is a social worker, writer, trainer, and sibling. Over the past 16 years, she has provided workshops, trainings, and groups for siblings, families, and individuals with disabilities. She has written about her own sibling experiences in blogs, magazines, and books, such as Thicker Than Water. Emily was an author and co-editor of the Sibling Survival Guide, Indispensable information for Adult Brothers and Sisters of People with Disabilities, published by Woodbine House in 2014. Emily earned a Bachelor of Arts from the University of Massachusetts, a master of fine arts from Columbia University, and a master of social work from Hunter College at the City University of New York. Emily and her husband, Tom, reside in Greater Seattle and have two young sons. Emily’s the primary family support for her brother, and she is grateful for the village of people who help. Emily joined the Sibling Support Project on September 4, 2018. She can be reached at emilyholl@siblingsupport.org. Welcome to Focus on the Future, Emily. Thank you for joining us today.

02:12 [Emily Holl] Well thanks so much for having me, Allycia. And thanks to The Arc Minnesota for hosting this.

02:17 [Allycia Wolff] Absolutely. Would you mind describing a little bit aboutthe Sibling Support Project for everybody today?

02:23 [Emily Holl] Sure, love to! So the Sibling Support Project is the first national organization designed to support brothers and sisters of people with special developmental health and mental health concerns. We are, as you mentioned, located in the Seattle area, and we’re a proud program of Kindering which is Washington State’s largest early intervention provider. And we do our work with siblings in a number of different ways. We have a number of publications and books written for and largely by siblings. We also facilitate some online communities for brothers and sisters of all ages. We have SibTeen for adolescent siblings, Sib20 for brothers and sisters who are in their twenties, as you might imagine, and also SibNet. So SibNet is our group for adults. It’s our largest and longest standing group. It’s got probably close to 6,000 members now. They are from all over the English speaking world. All three communities are wonderfully warm and reflective. Groups where brothers and sisters can share information and resources and really does validate one another’s experiences. So it’s really a very positive place for siblings to convene, and we also host a number of trainings and workshops on siblings and sibling issues. Probably what we’re best known for is our work with young siblings through SibShops. And SibShops are workshops for school age brothers and sisters, where young siblings can go meet other brothers and sisters because we know that having a sibling with a disability can be kind of an isolating experience, especially for a young person. So they’re really places for brothers and sisters to meet each other, to talk about the good, the bad, the in between of having a sibling with the disability and, first and foremost to come and play and have fun. So we’re very proud of our work with SibShops, which now exists all over the United States and all across Canada and in about a dozen countries around the world.

04:32 [Allycia Wolff] Wow. Is that all on siblingsupport.org? Is that where people find that info?

04:37 [Emily Holl] Yes. Yeah, you can find a lot more information about all of our work at siblingsupport.org.

04:42 [Allycia Wolff] So for you personally, what brought you into this passion? Because it seems like you’ve been in the work of sibling support for a really long time now.

04:52 [Emily Holl] Without giving away my age, I’ve been in the work of sibling support for several decades because first and foremost, I am a sibling. So I have an older brother. He’s 2 years older than I am, and he has an intellectual disability, and his name is Peter. He is really at the center of many of my personal & professional decisions, and I’m really grateful to him because he’s a pretty cool guy, and he’s kind of fun to hang out with. Don’t tell him I said that. [laughs]

05:20 [Allycia Wolff] [laughs] Don’t build up his ego too much.

05:22 [Emily Holl] Don’t build up his ego too much. Uh, no, he knows that I think he’s a pretty cool guy. Because of my experience with my brother, I think that really has kindled my desire to help support other siblings, to help create supports for other siblings, and to help continue the work of the Sibling Support Project that really began with Dylan Meier, our founder and the creator of SibShops. He started in the late 1970s, believe it or not, and was just building the SibShop model when when Peter and I were kids. And so I’m so grateful for the opportunity to be able to continue that work and provide young siblings with supports that I know I wish I had when I was a kid.

06:05 [Allycia Wolff] This whole podcast, Focus on the Future, is about future planning, when it comes to supporting people with disabilities. How has future planning affected your life personally if you want to share. But then overall, professionally, as far as future planning goes?

06:20 [Emily Holl] I think that future planning is one of the most important topics that families and siblings approach together. And let me correct that by saying that people with disabilities, families, and siblings approach together, right. In an ideal world, future planning is a process that involves really every member of the family, first and foremost, a person who has a disability. And so, personally, I can share a story that when Peter and I were a little bit younger, probably this was 15 or so years ago, our mom was in the hospital for a short period of time. And during that time, my brother- So we grew up outside of Boston in Massachusetts, and I was living in New York -and my brother called me and said, “You know, Emily, when Mom and Dad die, I can’t live in this house by myself.” And so I think our mom being sick for a short period of time, really, really got him thinking about his future and what that was gonna look like without our parents. And so we started talking about what the options were and my brother decided that he was interested in exploring a future in New York where I was living. And so my first reaction was “Okay, [laughs] this is gonna be a lot of it is gonna be a lot of work” because, you know…and also to set his own expectations. My brother is independent enough to travel. And so he would come and visit me in New York, and we would go to baseball games and go out for pizza and have a grand old time. And the first thing I had to do is to help him set a realistic expectation of what life might be like. It wouldn’t be all baseball games and pizza, and so… And he said, “You know, I understand that, but I I don’t want to be here by myself. I really want to be close to you and my now husband.”

08:26 [Allycia Wolff] Family. Yeah.

08:27 [Emily Holl] Yeah. And so that started our conversation. It was really my brother who started that conversation, which I think is ideal in some ways, but because really, it’s his future that we’re talking about, and he needs to be at the center of that conversation and really participating actively in it to the greatest extent possible. That really just set us on a path of finding out a lot more information and getting on a lot of waitlists. And my brother moved in with with me for a period of time to become a resident. Yeah.

09:03 [Allycia Wolff] As far as the Sibling Support Project, do you do any kind of intentional future planning work with the siblings in the ways that you support people?

09:12 [Emily Holl] Most of the work that we do… of course, we have the online groups for adults. Most of the work that we do is really starting young. So with young children and families and professionals, and helping people understand the importance of including siblings in conversations about any kind of major transition that’s happening in the person’s life, the person with a disability, and we really encourage that conversation to start as early as possible. So it’s not unheard of for us to say things like, “You know, a sibling might be a really good person to have in, for example, an IEP meeting at school” because siblings tend to know their brothers and sisters, we tend to know each other in ways that are just different from the ways parents know their children. And siblings tend to have kind of an unsentimental and accurate view of some of the strengths of their brothers and sisters, right. Whereas a lot of times we hear from siblings, you know, “Oh, my parents are really trying to protect my brother or sister, but I know that they’re capable of so much more.” We love it when parents invite – and I emphasize the word invite and not obligate – but we love it when parents invite siblings to be part of IEP meetings, particularly if there’s a transition, for example, from elementary school to middle school. Right? Who better to ask to be part of that conversation, than maybe an older sister who already attends that middle school and who knows the ins and outs of what teachers are good and what hallways to avoid at certain times of the day.

10:53 [Allycia Wolff] When it comes to the work that you’re doing in the SibShops and in supporting younger children like elementary school children, what do you think it is… What’s the best way to support younger kids as their siblings of people with disabilities?

11:08 [Emily Holl] Yeah. I think there are a couple of really key things that we can do as parents and professionals and other family members to support brothers and sisters. I think one is to provide siblings with opportunities to connect with one another. And SibShops are a great way to do that, but they’re certainly not the only way. Maybe it’s through an agency wide event, like an agency wide picnic or a a party or a dance, or a walkathon. Why not carve out some kind of opportunity, some kind of time for brothers and sisters to get together around this cause or around this event? It might be through playdates. Parents might schedule playdates not only for the child with a disability, but for their siblings that, you know there might be other brothers and sisters that they could connect with. Through pages of books, documentaries, films there so many ways to to connect more, learn more about life is a sibling and to connect more with with the sibling experience. So to connect siblings to one another, to learn more about what it’s like to be a sibling, I think those were really important, to carve out time to talk with the sibling. You know, we were talking about future planning a little bit earlier, and we were talking about how it’s so much easier to do future planning if you already have an ongoing conversation about the person with the disability. If it’s not this taboo topic that we just don’t talk about, right. It’s like we’re a family, we’re all in this together, our experiences of disability might be a little bit different, depending on, you know, a role in the family and and where we stand. But we’re all living with this together. And so a lot of times when we talk with older siblings and older families, it’s really hard for families to start that conversation about future planning because it just hasn’t been part of the ongoing conversation growing up. And I think it makes it so much harder because future planning is a really hard topic to start talking about.

13:15 [Allycia Wolff] Yeah, can be intimidating. A lot of times when I’m working with families that have older children, like their child that they’re supporting is in their twenties, thirties forties, and then as well as their siblings, they have waited so long to have that conversation about future planning because they haven’t wanted a sibling to feel required to step in in any one way. They haven’t wanted to put any implication, and they haven’t wanted to make any assumptions about what kind of care somebody is going to be willing to or able to provide. What do you have to say about that?

13:50 [Emily Holl] It’s a great question, and I think it really goes back to this idea of the importance of sharing information with siblings. And that is another huge way, sort of in answer to your last question too, how can we support sibling? By sharing information in age appropriate language, at whatever stage with the sibling, about not only the disability but also about the plan, the treatment plan, the service plan. Very, very important to share information, and when we think about it, where do parents get information from, right? They get information-

14:29 [Allycia Wolff] Doctors, teachers…

15:26 [Emily Holl] Right! Doctors, teachers, social workers, clinicians, therapists. If they’re lucky, siblings get information from parents, and all too often that really doesn’t happen, and it’s with the best, best intentions that it usually doesn’t happen. It’s for the reasons that you just stated; that ultimately, parents don’t want to burden the sibling with this obligation, these obligations, this responsibility, this idea that ultimately they’re going to be responsible for their sibling. If we think about it, much of the time brothers and sisters will in some way step into the role of the next generation of supporters or caregivers, regardless of how well they’ve been prepared to do that. I mean, it’s just the reality, because we are contemporaries with our brothers and sisters, and we will share the longest lasting relationship out of anyone in our family.

15:27 [Allycia Wolff]  Absolutely. I find that a lot of siblings of people with disabilities start to think about future planning and who’s going to be acting in that role is the support provider, when kids are as young as 6, 7 years old.

15:41 [Emily Holl] Absolutely.

15:41 [Allycia Wolff] And so not talking about it and not giving that information that you shared is so important, it’s meant to give children an opportunity to have a life that is just not necessarily quote unquote bound to their brother or sister. But it in turn, can cause more anxiety and more fear about that future picture.

16:08 [Emily Holl] Right. And I think not talking about it really can amplify that. And so you know, the good news is, while brothers and sisters are in some way- you know there’s not so much of a choice in terms of maybe what that outcome is. That we will, in some way play a supportive role in our brothers and sisters lives, right, if we’re all assuming that this is gonna be the outcome. And this is really the reason that parents are hesitant to talk about what’s going on with the disability and the service plan and in the future plans. But- So if we are going to play this role, the good news is that if we are provided with an opportunity to talk about our vision for the future, to hear what the vision is for our other family members, for our brothers and sisters who have disabilities, what our parents’ vision is, if we are able to participate in that discussion and to share our own ideas and our thoughts and our fears and our hopes and our dreams, we’re much more likely to feel as though we are able to make choices along the way and that it’s not such a big bird in our obligation, because we’ve been part of that process of planning and we’ve been part of the discussion, and our own futures have been considered in that as part of that conversation.

17:35 [Allycia Wolff] Absolutely. That’s powerful. The statistics that you mentioned earlier I’m curious about that.

17:43 [Emily Holl] I think, increasingly, disability service providers are recognizing that siblings are stepping in as the next generation of caregivers or supporters. And if we look at the US, we know that there are more than 75% of adults with intellectual and developmental disabilities who live at home with family supporters. And of those family supporters, more than 25% of them are age 60 or older. And by 2030, so in 10 short years, the number of individuals with I/DD who themselves will be age 60 or older, is expected to reach 1.5 million. And these numbers are a little bit old, so these numbers are probably, these statistics are dated from a few years ago. Honestly, these numbers are probably a little bit higher now. And if we look at the fact that, this is from 2016, only 20% of people in the U. S. with I/DD or known to, are served by state I/DD agencies. And of those folks, only 17% receive long term services and supports, we’re realizing that most people with disabilities receive no government supports. And they are relying solely upon what we refer to in the field as natural supports. Right.

19:06 [Allycia Wolff] Which we all have. Yeah. But it’s…

19:09 [Emily Holl] And which family members always go, “Oh, that’s me, oh, they’re talking about me. I’m the natural support.” So there’s a recognition that his parents age and pass away, siblings most often assume those support responsibilities for their brothers and sisters. So again, if we know that this is the big picture of where we’re heading as a field and as a generation, it’s so important to make sure that siblings are a part of that conversation of planning for their brothers and sisters so that we can plan not only for people with disabilities and make sure that self determination is at the center of their decisions and their lives, but also self determination for siblings. Right, I mean, self determination is for everyone. And so the only way we can achieve that is by having conversations.

19:57 [Allycia Wolff] Yeah, an open conversation that’s ongoing and always changing.

20:01 [Emily Holl] They think another reason families hesitate to plan is because they’re afraid of making this plan and setting it in stone, and what if something changes? Well, you know, the truth is it’s going to change because life changes every day. And so if you start to think about future planning as something that is fluid, as something that evolves, as something that changes, as something that is flexible to meet the evolving needs of every individual in the family, I think suddenly it becomes a little bit less daunting, right? It’s like, “Oh! Well, this is Plan A, but we’re gonna have a Plan B and a Plan C and a Plan D, etc, etc. [laughs]

20:38 [Allycia Wolff] [laughs] Yeah. As you think back to your situation growing up and the hundreds of, if not thousands, of conversations you’ve had with other siblings around future planning and that conversation about caregiving of a sibling with a disability, is there anything that you wish or you’ve heard from other siblings that they’ve wished that their parents shared with them when they were growing up?

21:03 [Emily Holl] Absolutely. I think first and foremost information about the disability. You would be surprised to know how many siblings really never have had a conversation with their parents about the diagnosis for the disability. And so many of us grow up not really, not really sure of what is going on with our brother or sister. I think that’s really changing with some of the younger generations because we know so much more, for example, about things such as autism, right? I mean, there’s still so much more to learn. But most everyone has heard the word autism. Ah, and so there are, I think, many more conversations happening around diagnoses than there were. So really just starting with even the diagnosis, um, sharing information about what that means, sharing information about where’s my sibling going, who are all these therapists and doctors? And who are these people who are really when you think about it, those professionals play a really important role in the life of a family, especially when kids are young. And so often siblings are just not even really talked to about what’s going on. So that kind of information we hear all the time, and then the future planning. You’re right, kids as young as six are thinking about, “When we get older, what is my role? What is my responsibility gonna be? Am I gonna take care of my brother? And so a lot of siblings grow up wishing that there was more of an open door of communication. That they could ask those questions of their parents.

22:43 [Allycia Wolff] And what have you heard that you and other siblings have been really glad that their parents have shared with them? In growing up in the conversation, even into adulthood, what have people show that they’re happy with?

22:57 [Emily Holl] Yeah, I think first and foremost the reassurance that, um, that future plans are being made. And that we might not know exactly what that looks like today, but it’s not gonna fall entirely on you. And you’re gonna have a say in this as well. We know so many siblings who say that that makes a big difference. That just the ability to be part of that conversation, to know, hey, you know, if you say to your parents, “You know, when I grow up, Peter’s gonna live with me,” right. It’s so reassuring for a sibling to hear, “You know what, honey? That is great, if that’s what you want and if that’s what Peter wants, great. We absolutely support that. But if that’s not what you want, and if that’s not what Peter wants, then you need to know that your dad and I are making plans. We’re talking about it, and you’re gonna be part of those conversations.” Because I think there’s a lot of unspoken assumptions. So, for you know, in my case, for example, I had just always kind of assumed that my brother would live with me at yet whatever point like whenever the time came that he would just move in with me. And that was kind of what we were looking at when he first said, “You know, I can’t live in this house by myself”, and I thought, “All right, well, time to find a bigger apartment.” [laughs] And so once we sat down and started talking about it as a family, uh, I realized he said to me very kindly, but he said, “Well, no offense, sis, but I really have no desire to live with you”. [laughs] I think he used other words like, “No, no, no way. Like that’s not happening.” But, you know, I had had this assumption for so many years, and that was not at all what my brother wanted. And so, um, of course, I think it can be challenging for families, particularly if the person with the disability has not had an opportunity to explore these ideas and options and to think about his or her own future and maybe is not able to articulate as well or in the same way. But it’s still so important for that person to be as involved in the planning process as possible.

25:11 [Allycia Wolff] And on that note, with you sharing that you had kind of always assumed that Peter was going to live and move in with you and and you sharing that the best thing, one of the best things, that parents can do is is have that open conversation and say, “You know, if that’s what you want that’s great. If not, we’re gonna figure out something together as a family.” A lot of families that I talked to are again concerned about the quote unquote burden of all the responsibility. And parents often ask, and are curious of, is it even fair to ask my child that doesn’t have a disability to step into that role.

25:49 [Emily Holl] Right. Well, I think I think it’s important for parents to recognize that their children, I use air quotes here, their “other children” they’re typically developing children, they’re already thinking about this. And they might already be assuming, like I did that that question was being asked anyhow, regardless of how I felt about it. This was just something that I had assumed. That this role that I assumed I would play. And so, many siblings who cannot, do not have that conversation, that who do not have access to those conversations and who do not feel as though they were given a choice in the process. Obviously, that feels a lot less fair. Right. [laughs] I think that’s what I was getting at earlier. If the outcome is going to be the same, right, if I am in some way going to support my brother, whether that’s I’m gonna be his point of contact for his service coordinator or he’s gonna live with me or a million other possibilities in between. If I’m going to be involved in some way, how much better am I gonna feel about that obligation? How much, how much fairer is that going to feel if I am part of the conversations leading up to those decisions, right? And if I can say yes, I want to be involved, I’m willing to be involved. And here’s how I’m willing to be involved.

27:14 [Allycia Wolff] Yeah, yeah, you’re setting your expectations and your needs and your desires. And it’s also I think a big part of that we’ve talked in this podcast a lot about choice, primarily choice for people with disabilities and how important that is. And in this context, it’s the importance of choice for siblings. When you’re involved in that conversation, it leaves a lot more room to have fun, and a lot more room to have more typical like brother-sister relationship with your sibling instead of just acting in that caregiver role.

27:47 [Emily Holl] Absolutely. Because guess what! I mean, what my brother was saying to me was like, “You don’t- You’re not my caregiver. Like, you know, I don’t really want you to be my caregiver.” And so I think that that really did open a door for us, to kind of go back to being brother and sister. Though… I’m as you said, I’m his primary support right now, and, um, and because we were able to talk about it and plan, it’s a role that plays out in a way that feels more comfortable for both of us, right? Like I’m not pulling this whole like I’m your caregiver thing, even though it like the reality is that I’m his primary family supporter. In terms of interaction with his other supports and in terms of helping to sustain and maintain his network, like I’m the person. But yes, you’re absolutely right. Because we were able to talk and I was able to understand his perspective on what he wanted and what he wanted his life to be and what role he wanted me to play and not to play. [laughs] And I was very open about, you know, what I was willing to do and what role I was willing to play and not play. It does, it kind of, it clears out a lot of those obstacles and barriers that come up.

29:06 [Allycia Wolff] And it gives you the opportunity to say no and say yes.

29:10 [Emily Holl] Absolutely. And I think, you know, I think that the challenging part is like any sort of problem solving process, right? It’s like if we can sit down as a family and say “All right, so here’s the deal. This is Peter. These are his strengths, these are the things he excels at, he’s really good at. These are the areas where he needs help and those needs might evolve and change or become greater as he gets older. Like all of us get older, right. And we have different needs, different health needs.

29:43 [Allycia Wolff] And we gain experiences, and we make better choices.

29:46 [Emily Holl] If we can sit down as a family and say “Okay, here it is like here. Here is Peter in his entirety, these are his needs right now. Let’s think about what his needs might be in the future. Let’s try to anticipate those needs. How are we gonna piece this together? You know who’s willing to do what? What is your dream? What is your ideal vision of what that life looks like? And how can we work towards that? And by the same token, or maybe the other side of the token, what is the nightmare? You know, what is the scenario that we are all trying to work away from? And I think that really kind of helps set the path to- or in a direction that’s really gonna work for everyone.

30:29 [Allycia Wolff] Yeah, when I facilitate meetings to plan for people’s futures and help people create like a more distinct plan, there’s a lot of conversation of let’s talk about those fears and concerns. Not for too long, but it is important to acknowledge where those hesitations and fears are so that you can properly plan for the future. It’s not the happiest thing to think about, but it is a really necessary component to that conversation.

30:56 [Emily Holl] Absolutely, and I think it’s so important for siblings to be part of that because I think that so many siblings have a fear of maybe saying no, or maybe, being perceived as not being supportive. But there is this very real and very valid concern about balancing the needs that we come across in our own lives. So a lot of conversations in SibNet, for example, are about well, how do I have my own career and my own family and my own kids and take care of all of those things, but then also give 100% to my brother or sister, right? It’s like all of us who have many competing needs and interests and endeavors in our lives. Right? So I think that being able to express those concerns as a sibling and to say, Hey, I want to help out as best as I can, but I want to have my own life, too. And I know that that’s gonna come with its own obligations. And I’m just I’m anxious about how I’m gonna balance everything. That’s a great starting point for a conversation.

32:13 [Allycia Wolff] Yeah, there’s a lot of room to grow in there, and a lot of a lot of things to more or less, coordinate and prioritize. And I like in your bio it said that you are grateful for the village of people who help. And so it’s not only you. Yeah, I’m sure that’s a big conversation is reaching out to the key people who are also, you know, in love with somebody and want to be there to help and support.

32:41 [Emily Holl] Yeah, for sure. And I think siblings are notoriously bad at doing that, asking for help. [laughs]

32:50 [Allycia Wolff] Worse than parents? [laughs]

32:52 [Emily Holl] Maybe, maybe equally bad as parents. How about that? Yeah, but I do. I think siblings are terrible in asking for help. And really, we we always use this metaphor. So this was something that we write about in the Sibling Survival Guide, which was really written as kind of a one stop for adult siblings to get information not only on common sibling issues and experiences, but also things like navigating the service system and legal and financial planning and end of life issues. Like really from childhood up through golden years kind of stuff. And so one thing that we write about there is self care. We use that the metaphor that you’ve heard about when you’re on the plane, they say, you know, should something terrible happened, make sure that you put on your own oxygen mask before assisting your, you know, fellow passengers who might need help. Right? We’re terrible at putting on our own oxygen mask.

33:45 [Allycia Wolff] It’s so simple. And it’s the most difficult thing.

33:48 [Emily Holl] Yeah, it is the most difficult thing. Um, and so I think siblings really need to remember that and feel validated that they’re able to do that and to take care of themselves before necessarily taking care of others, particularly adults.

34:05 [Allycia Wolff] As you think about future planning with siblings, you know, in the forefront of your mind. Is there anything else that you would want to share?

34:14 [Emily Holl] Oh, it’s such a big question. I mean, um, you know, I think, for professionals who work in the disability field, I think it’s so important to try to build that bridge with siblings. And I think that because so many service providers are recognizing that siblings are stepping in as the next generation of caregivers, I think they’re really interested in connecting with siblings, but don’t always know how, because the parents are traditionally, the folks who’ve had the relationship with service providers. Right? And rightfully so. And so I think I would challenge professionals to think about small ways that they can start to build bridges and connections with siblings. To parents, I would really encourage you to keep the doors open for those conversations and to really kind of just find out what siblings are thinking about the future without worrying about burdening people or maybe planting seeds that they might find intimidating or unhelpful. Siblings are thinking about these things, and I think for the most part would really welcome the opportunity to share their thoughts and ideas with parents. And their feelings and their concerns and have those validated. So I think they’re really small ways to make a big difference. I think that’s the good news.

35:41 [Allycia Wolff] And then anything for any adult siblings listening to the podcast?

35:46 [Emily Holl] Keep fighting the good fight. [laughs] For adult siblings, I think if you haven’t connected with other siblings, I would really encourage you to check out SibNet and recognize that you are part of a large and amazing group of people who really are trying to live their own lives to the fullest while also supporting their brothers and sisters and finding ways to balance that. And it’s not always an easy balance. It’s not an easy juggle. And we need each other in that, in that journey, or on that journey. It can be really, really helpful to connect with other siblings.

36:26 [Allycia Wolff] Thank you for sharing. Thank you for being on the podcast today. And I appreciate you taking the time.

36:34 [Emily Holl] Yeah, well, I so appreciate you devoting this time to siblings, so thank you.

36:38 [Allycia Wolff] Yeah. Thank you, Emily. Bye.

36:41 [Emily Holl] Thank you. Take care. Bye bye.

36:51 [Allycia Wolff] If this episode inspired any questions for an advocate at The Arc, please give us a call at 833.450.1494. On the next episode of Focus on the Future, we will be talking about self advocacy. What self advocacy is, how people identify with self advocacy, and why self advocacy – advocating for yourself, especially if you’re a person with a disability – is important. So we’ll be talking with a self advocate and all that goes along with that. Please join us. Focus on the Future is a podcast of The Arc Minnesota. Subscribe to the podcast on your favorite streaming service to stay up to date with the newest episodes. If you’re enjoying listening, please support the podcast and our mission by donating at arcminnesota.org/podcast. Also, we would love to hear from you in the form of a review or a subscription to the podcast. And if you have anything that you’d like to hear in this podcast, please give us a call and let us know. Our podcast music is composed and recorded by Micah Kadwell. Micah is a talented guitarist from New Brighton, Minnesota, and he also has autism. Thank you, Micah. Focus on the Future is hosted and produced by myself, Allycia Wolff, and a team of wonderful sound engineers. Thank you to the team and have a great day. We’ll see you next time.