Geralyn Arango Deely (00:15): Hello, and welcome to season three of Our Parallel Paths: A Future for my Loved One with a Disability... & For Me. I'm your host, Gerry, Dr. Geralyn Arango Deely, and this podcast is about just what the title says, the parallel paths of family members, certainly parents, sometimes siblings as parents age or pass on, and their loved ones with intellectual disabilities. I'm a parent myself and I always have questions. (00:45): Our Parallel Paths is about creating a promising future for our adult family members with an intellectual disability, and a promising future for ourselves as our role of family member evolves alongside them. There is more than one path, more than one future to talk about, and that's why we're here. Some remarkable people share their stories on Our Parallel Paths, and I really hope these stories and the wisdom that comes with them resonate with you and give you ideas and hope for your path. (01:16): So each season so far, an episode of Our Parallel Paths has featured a sibling story. Maybe you'll remember Suzanne Muench from Season 1 and Eric Goll from Season 2. Brothers and sisters with and without disabilities are (laughs) usually in each other's lives longer than anyone else because, and siblings with disabilities may live longer than their parents and will very likely outlast the presence of (laughs) all the staff and all the service providers who passed through their lives. And we families generally know by now that there are often lots of staff and lots of service providers, and they may be wonderful. They may be necessary. They may even feel like family, but they are paid support. And though they may stay in our loved ones' lives, their shifts that we came to rely on end when the staff is no longer on the payroll. So then what? Then who? (02:15): I have had an ongoing interest in learning more about sibling relationship when one of the siblings has a disability because my own son, Nic, has Down Syndrome, as you know, and his sister Courtney/Izzy, uh, depending on where you know her from, and is here today, is older by just about three years. She has just separated, left the Navy. Thank you for your service, as I always say. And she has a family of her own. She and Nic have always been close, and that's so great, but I know that Courtney is maybe getting a little bit more curious about this positive, stepped-up future role in Nic's life, especially because Nic and Courtney's father passed away nine years ago, and because Courtney doesn't live in Pennsylvania anymore. She's in Norfolk right now. Um, and Pennsylvania is where Nic's services are and where Nic will likely have to stay, which is fine. Um, but when I'm gone, then what? Then who? (03:20): I know I'm becoming more curious. I'm becoming more concerned as I try to support Nic to have a life where his sister will not have a seismic shock when I die. And the stories and wisdom of others, I find them really helpful. (03:37): So holy cow, what wonderful guests I have today. Welcome to my daughter, Courtney/Izzy, depending on where you know her from. And welcome to Emily Holl, sibling and leader in the field of sibling support. And so a bit about Emily. Emily is the Director of The Sibling Support Project, and Emily has over 20 years of experience in the disability field. She served on the board of the Sibling Leadership Network, and she's written about her own sibling experiences in blogs, and magazines, and books such as Thicker Than Water, and I have a copy of that. Check your shelf. You might have one too. (04:14): Um, Emily was the author and co-editor of a book called The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities. And that came out in 2014. Um, it seems that it's out of print. Um, I hope that they come up with a revised version because it's so much good stuff. And the 2014 version, I think I got the last reasonably priced copy, because it must be something people want. It's going for, like, $75 a pop if you want to buy it on Amazon used. But that's where I found Emily's name. (04:47): And I got curious. Emily's provided workshops and training and groups for siblings and families and people with disabilities. If you have heard of SibShops, and Courtney spent a moment or two in SibShops too, you may know Emily's name from there too. She's worked all over the country from my native New York City to Minnesota to where she is coming to us from today in greater Seattle. Emily is a wife and a mom, um, of two boys and a sibling to her brother, Peter. My daughter, Courtney, is a wife and mom of three-year-old Vivi. Snaps to Vivi, granddaughter. Courtney Arango (05:28): (laughs) Geralyn Arango Deely (05:29): (laughs) And older sibling, of course, to Nic. Uh, so welcome, Emily, and welcome to my darling daughter, Courtney. Both of you- Emily Holl (05:38): Thank you so much for having us. Geralyn Arango Deely (05:40): Yay. Courtney Arango (05:41): Yeah, I'm so excited to be here. (laughs) Geralyn Arango Deely (05:43): Awesome. Now, both of you are somebody's ch- somebody's child, right, somebody's mother, and you have a sibling with a disability, so you know that phrase of the sandwich generation? I think I'm going to call you guys the club sandwich generation because, and I don't know if anybody's, that's my original thing or what, but, um, in the midst of the usual, you know, my parents may be getting older and I have children, you've got this in, the, the layer in between with that extra little slice of bread that's your sibling with a disability. And so you have that to think about too. And every, you know, everyone who's listening may have a greater or lesser, you know, degree of that, but that's real and it can be a lot. So as mom, I'm often thinking, "How can I support my daughter," and hopefully how this podcast can help support people like us on the parallel path. (06:38): So Court, I'm going to start with you. Courtney Arango (06:40): Okay. Geralyn Arango Deely (06:41): Your dad and I tried so hard when you were little to be sure that you never felt less important than Nic, you know, with all the early health issues. You know how much time we spent in the hospital. The ongoing education issues, you know, uh, uh, behavior issues that were kind of scary sometimes. And I know (laughs) your dad and I both hoped we did okay by you, which is typical of any parent and their child, you know. Um, when a new one comes along, "Oh, you know, we never thought we could love anybody as much as you," and you find out that you can but how's the child doing? That's typical stuff, you know. (07:17): Um, but we also kind of tread lightly on what would happen when we're gone, and your dad has passed. Um, I don't, I don't know. Um, I can only say that we may, did we tread too lightly? Did we tread too heavily? But I'm thinking what do you remember about those years yourself? Because I can tell you what I'm thinking but is that what you, um, recall too and the challenges of being Nic's sister or the gifts of being Nic's sister? Courtney Arango (07:48): Um, so growing up, I never felt like I was in, uh, my sibling's shadow in any way except socially because Nic is probably the most social, um, and popular person I've ever met. Uh, and then there's, you know, I was always Nic's sister, which was never because he had a disability. It was just because he always has had this massive personality who everybody knew Nic and Nic knew everybody and it was great. Um, but you guys did a really great job of preparing me for kind of what life would look like in some aspect, and I, I know that we have had conversations about kind of, you know, the future and all these things, but it was never... You in particular never made me feel like taking on Nic was, I guess, it was never a burden. It was always just sort of like of course I'm going to take care of my sibling. Like, what else am I going to do? (08:44): And I've always been a part of planning, you know, even the little things, being part of his PATH meetings where we're just kind of deciding the little, you know, five years in the future, um, and just figuring out little steps. And now that I'm entering into my big girl kind of taking on a bigger part of my brother's care or just kind of helping out in his life, um, I feel, I feel prepared and I just, I'm ready and I'm excited about it and I'm grateful that I'm kind of prepared for (laughs) what's happening, in a way. Geralyn Arango Deely (09:23): All right. Let me get my Kleenex. I think I'm going to cry, but... Courtney Arango (09:26): Oh, don't do that. (laughs) Geralyn Arango Deely (09:28): Okay, I won't. Um, but I'm, uh, that's, that's, that's the best thing you could ever say to me as a starting point, is that you're like, "All right, I'm on board." You know. Um, and so now you guys are kind of old, you know? You're in your high twenties. Courtney Arango (09:48): Thanks. Geralyn Arango Deely (09:48): Well, I'm, don't even ask me how old I am. Courtney Arango (09:49): (laughs) Geralyn Arango Deely (09:50): You already know and we're not going to say. Courtney Arango (09:51): Stop calling me old, Mom. (laughs) Geralyn Arango Deely (09:52): Not going to say it publicly. (laughs) But, um, you're still close even though you're not physically pr- in proximity to one another right now. Uh, and I love that and I feel like it's such a gift. Um, so with Daddy gone and your own life and s- there's so much going on for you: moving, school, motherhood, being a wife, having a husband who has married into this. you know. Courtney Arango (10:19): Yeah. (laughs) Geralyn Arango Deely (10:21): What kinds of things are you thinking about? I think we call this the anticipatory phase. You're not in it yet, but you're, it's something. Things are coming a little bit. What are you thinking about? Courtney Arango (10:34): So I, I'm just, in the next couple years, the goal for my family, um, right now we're in the middle of moving, which as everybody knows is not stressful at all. Um, and I did recently separate from the military. I'm now a veteran and I'm getting out of Norfolk, Virginia, where I've been stationed for the past six years. Um, and finally getting to move up north and now be able to be more a part of my family's life, not only as just, you know, getting to see cousins and uncles and aunts and everybody again because I'll be close, um, but getting to take more responsibility on for Nic. Um, and my husband, who is a religious listener of this podcast, um... Geralyn Arango Deely (11:18): (laughs) Courtney Arango (11:18): ... because he never (laughs) he's never had any kind of, um, interaction, uh, significant interaction with people with intellectual disabilities. So this is all very new to him and he's just now... When we were dating, I was like, "Just so you know, like, this is kind of what my life is going to be like. Either you can get on board or you can go, because there's no negotiation with that." Um, and so now we're just, we're getting ready to start a whole new chapter that we're excited and nervous about and I have a three-year-old who's so excited to be near her Muji. Geralyn Arango Deely (11:55): That's me. Courtney Arango (11:55): Which is what we call her grandmother, yes. (laughs) And she's near Uncle Nic and they all get to gang up on me now. And it's a big, it's a big step, but it's an exciting step. It's a stressful step, but it's going to be, it's going to be good for all of us, and I'm, we're all very excited. Terrified, but excited. (laughs) Geralyn Arango Deely (12:11): Okay. Well, um, are there things in this anticipatory phase that you kind of say, you know, there's any, anything you'd add into that with regard to, like, what does it look like with Nic? Or are you feeling like, "I'm good right here at this point," or... Courtney Arango (12:28): I think it's kind of all anticipation, because I've, I've been... I've been a part of Ni's kind of plan my whole life. I've, like I said, I've been to PATH meetings. I've been, um, I've attended different kinds of events for siblings with, uh, siblings... I've been to SibShop and things like that. I think I just lost my place a little bit there. Geralyn Arango Deely (12:51): (laughs) Courtney Arango (12:51): (laughs) I... Geralyn Arango Deely (12:55): Aw, she's my daughter. (laughs) Courtney Arango (12:59): (laughs) Um, Courtney Arango (13:00): I think now, it's, it's kinda an open book right now, like we don't really know what we're getting ourselves. Like we know what we're getting ourselves into, but we don't know exactly what my role is gonna be. Um, I've seen what you've done over the past, in my entire life, um, but I don't know the specific of how we're gonna I guess jump into this. Um, but yeah. Geralyn Arango Deely (13:26): Okay. That's, that's, that's a lot. That's cool. Courtney Arango (13:29): That's a big rambly answer, and I'm very sorry (laughs). Geralyn Arango Deely (13:33): No, it's just, just fine. And so, um, like Emily, and Suzanne, and Eric from the older episodes, they are in it, you know? So Emily, can I start you with a bit of your own story of yourself as sibling and, you know, family member before we even get into all the juicy professional stuff? Um, tell us about, tell us about you, Peter, and the crew. Emily Holl (13:59): Sure. Yeah, well, um, first of all, Courtney, thank you for your service. We appreciate you so much. Uh, and it's really exciting that you're heading to the next chapter. And I, I just love the way that you talk about you know, not knowing really the specifics, right? But having things laid out in such a way that you know, you feel confident moving forward, which I think is really the ideal, a real testament to what your mom has done, the plan for Nic, and to include you in that planning process like really all along the way. Um, I think that that is like one of the most important things that parents can do to help their, all of their children really, so. Um, just wanted to comment on that. (14:44): My story is I, I'm a little older. I love the fact that you know, Courtney, you're saying, "stop calling me old." because I believe that I'm about like twice your age (laughs). And um, so my brother and I are now sort of in middle age, and both our parents are, have passed. And um, he lives in Brooklyn, New york, which is, if anyone's doing the geography, completely across the country from where I live now. Geralyn Arango Deely (15:15): Yeah. Emily Holl (15:15): And he has really good services in place that we set up, um, really quite a few years ago. And that was a process that was really driven by Peter. At that point we were, you know, in our thirties, and uh, our mom went into the hospital. She had pneumonia, she recovered and was fine after that. But when she was in the hospital, my brother called me. He was living outside of uh, Boston, where we grew up, and I was in New York City. Um, and he called me and he said, "Emily, I've been thinking, since mom's in the hospital, you know, mom and dad are not gonna be here forever. And when they pass, I don't think I can be in this house by myself, like that's just a lot to take care of." Geralyn Arango Deely (16:07): Uh-huh. Emily Holl (16:07): So he really started to think about you know, what his needs were, because at that point he was living at home with our parents. Um, the location was really great, he was near public transportation, he was able to go to work. He really, he struggled shoveled the snow for you know, our aging parents. It was like a really nice kind of setup. But he recognized that you know, something I had been thinking about for years like frankly, recognized that you know, while it was a, a viable situation at that point, it wouldn't last forever. Geralyn Arango Deely (16:41): Wow. Emily Holl (16:41): So, yeah, Kudos to Peter, you know? Geralyn Arango Deely (16:45): That's good. That's pretty insightful, yeah. Emily Holl (16:47): It's very insightful. Peter has intellectual disabilities, and he is very insig- insightful about many things. Geralyn Arango Deely (16:54): Mm-hmm. Emily Holl (16:56): Um, that is not, that is not one of the areas that he needs a, a kinda support, right? He's really good about kinda recognizing these things. So um, yeah, he sort of, I would say, you know, lit that, lit that match, you know, and lit that fire under all of us, so we started to talk about planning, and he, he you know, he said, "Emily, I really want to, I really think I wanna live in New York, um, to be near you." Um, you know, at first my reaction was... because my brother had, he would visit me in New York, and we would have a great time. We would go to baseball games and go out for pizza. By the way, there's no better pizza in the world than in New York. Geralyn Arango Deely (17:39): Hello? Courtney Arango (17:42): That's correct, yeah. Geralyn Arango Deely (17:42): That's correct. Emily Holl (17:43): I've lived in many places, I've tried, but. Geralyn Arango Deely (17:45): Yeah. Emily Holl (17:46): NYC has it all. Yep. Geralyn Arango Deely (17:48): John's Pizza - Emily Holl (17:49): Oh, that's where we went. Geralyn Arango Deely (17:51): (laughs). Emily Holl (17:51): Digression. Digression. My 11 year old, on his birthday insisted that we go there. Geralyn Arango Deely (17:58): Yeah. It is a little hole in the wall. Emily Holl (17:59): It is a little hole in the wall, and it's the best pizza you'll ever have, so. If you're listening, we love you. Geralyn Arango Deely (18:04): (laughs). Emily Holl (18:04): Back to the podcast. Okay. Um, so anyhow, so I really, you know, we had to have conversations about like, what that expectation was. Like, what would that look like living in New York City everyday? You know, riding the subway everyday or riding the bus everyday. And um, you know, being in an apartment that may be smaller than the house he's used to living in. (18:27): Uh, so, you know, we did a lot of talking, and I, at that time worked for a large disability service provider in New York City. So I had really, I wanna say like really the luxury of being able to ask a lot of questions of my colleagues. Um, I was working on the communications side of things, I wasn't really like a, you know, directly in the field. And there was a lot of procedures, and processes and requirements that I had to learn about to understand what would it mean to move my brother to New York. (19:00): And so, um, the first thing that we had to do was have Peter move in with me, and my now husband, which Courtney, you talked about how you need your husband and you're like, "So this is the deal," right? Courtney Arango (19:13): (laughs) yeah, yeah. Emily Holl (19:13): Like, I'm a this is the deal. This is something I actually wrote about in a book called Thicker Than Water, which is a collection of essays by adult siblings. Um, mine was called Happily Ever After? It was all about feeding and sort of trying to find your life partner um, as kind of a package deal, and how do you find that person who's gonna deal with not only with my lovely quirks, but you know, with my brother? And the stuff that this person might assume a role of being a caregiver to him as well? (19:43): So um, so that became really real when my brother moved in with us. And um, it was definitely a learning experience, but you know, my husband and I talked a lot about doing things at that time to invest in my brother's future and to invest in our future. Because we didn't, you know, I had heard so many stories um, about, from my job, you know, the last parent passes, the adult with disabilities living at home, and suddenly there's a crisis situation, right? Courtney Arango (20:20): Yeah, yeah. Emily Holl (20:21): Um, and then the sibling, we don't have time to grieve even, because we're scrambling to figure out, "What can I do to help my sibling?" Like to help my, in my case to help my brother. I didn't want that scenario to play out. So as much as it was kind of, um, an investment, you know, and a trial for all of us. I mean, my brother was suddenly living with his bossy sister, you know? Who's telling him like, what to do and what not to do. Courtney Arango (20:50): (laughs). Emily Holl (20:51): It was, you know, it was definitely, it was a lot. But um, I think we learned a lot about each other and ourselves throughout that process for sure. and I'm still grateful now, and especially to my husband for really like trusting me and understanding we are gonna go through this process now to ensure that you know, the path forward is a lot smoother for all of us. (21:13): So, um, so anyway, long story short, we eventually did um, get my brother. Um, we met eligibility requirements, received services in New York. And he was on a wait list, we all know how the wait list goes. And um, eventually did get into a supportive apartment with an amazing roommate. And um, fast forward to current day, my brother actually has a different roommate now. He's had a different roommate for I think about 10 years, uh, which is his girlfriend. Geralyn Arango Deely (21:52): Oh, wow. Emily Holl (21:53): Yes, he met a lady friend, and he's lived together for more than a decade. And they um, you know, they just, they really support each other, which is so nice. Geralyn Arango Deely (22:04): Yeah. Emily Holl (22:05): And I am the caregiver from afar, which is an interesting role. Geralyn Arango Deely (22:11): Okay. Okay. Emily Holl (22:11): Yeah. Geralyn Arango Deely (22:12): Huh. Wow. So, Court's. Courtney Arango (22:17): Yes. Uh, but, so, when you talked about kinda being a caregiver from far and you're, uh, how you had to kinda find a partner and who was willing to take these steps with you. And now, when you were first entering the role of, okay, like, caregiver is now more of a role that I'm taking, you know, having your sibling living with you, like it's... those are all things that I have either recently experienced or I'm about to start going into. And we, like I said, we're in the process of moving, and we're heading up to Maryland, uh, rather than Pennsylvania, so that we'll be about an hour away. So kind of being close enough to come visit on the weekend and far enough away that you know, it's not every five seconds. Um, and also, you know, babysitting is great, thanks mom (laughs). Geralyn Arango Deely (23:07): I'm excited. 'cause you've been gone for so long, you know? (23:09): Yes. Ahhh. Courtney Arango (23:11): Yeah, I'm ready to, ready to get out of here. Um, but, it's, I don't have a lot of people in my life who are going through anything similar to what I'm about to go through at all. So it's cool hearing somebody who's like, "Yeah, no, like you, you're gonna come out of this. Like you're gonna be able to have your sibling kinda have their own life." 'cause also like, living with your sibling, no, no one really wants to live with their sibling forever, for the most part the same way. (23:41): I, mom, I love you so much. I don't wanna live with you again (laughs). Then I think that's- Geralyn Arango Deely (23:44): All right, back at you. that's fine. Courtney Arango (23:49): (laughs) That's such a normal thing. Um- Geralyn Arango Deely (23:51): Yes, it is. That's appropriate. Courtney Arango (23:53): ... yeah. And my brother is 25. Geralyn Arango Deely (23:56): Yeah. Courtney Arango (23:58): 20... yeah, he's 25. Geralyn Arango Deely (23:58): Yeah. Courtney Arango (23:59): So he's doing all the normal kinda 25 year old things, and that doesn't include like, "I wanna move in with my big sister, and her husband, and their, you know, their toddler." You know, these things. It's like, "okay, like, some of these is very normal." But we have to kind of add extra everything to it, and it's just, I, I hope that I can have myself together, uh, kind of the way other people have done it. And it's a lot, and I'm very impressed with you Emily (laughs). Emily Holl (24:25): Oh, thank you. And I have to say, I have to give a little plug, for... so the Sibling Support Project. Geralyn Arango Deely (24:32): Yeah. Emily Holl (24:32): We facilitate a number of um, Facebook groups. I know, I know the young people these days are not on the Facebook, but I have to say that our Facebook groups, we have um, among them more than 8000 members, and there's one for adult siblings which is called SIBNET, so S-I-B-N-E-T, all in one word. And we have a group for sibs in their 20s which is called SIB20, SIB20, and we have one for teenagers called SIBTEEN. (25:03): Um, but Courtney, when you talk about how like, um, validating it is to hear from another sibling, even at a different stage of life or whatever, and how, how it is, because like you said, you know, we don't necessarily know other siblings who are going through similar things. Courtney Arango (25:20): Mm-hmm. Emily Holl (25:20): Um, you know, joining those Facebook groups is such a, for me it was really a life changing way to understand and validate my own experience. And I'm gonna date myself again. We'll just talk about how old we all are during this podcast, but um, SIBNET actually has been around since like the internet, and it started out as a lister. And I was on the lister, okay? That's how old I am. Geralyn Arango Deely (25:45): Old school. Emily Holl (25:45): Um, but even, you know, even when we didn't have like images, and pictures, and, you know, videos and all the great things we have now, it was just so gratifying to read posts from other people. And sometimes it was just Emily Holl (26:00): ... email address that you saw or, like, a screen name. And it was like, chapters of my life, you know, that I could read about in other people. Courtney Arango (26:09): Yeah. Emily Holl (26:09): And it was just, it was really, really cool. So if anyone who is listening is a sibling, Courtney, we hope to see you in the group soon. Um, you know, that's just a really, it's a really nice way to connect with people who get it. Geralyn Arango Deely (26:22): Mm-hmm. I, I re- ... That was my next question was just to sort of make this connection because I do realize Courts, you haven't got anybody that I can think of that you're close enough to, that, you know, especially far away here is, who gets this, who lives this story. One of the things that I get so much strength from is what I say, the, the, my other parents where they get it. Where I always say, some friends, you say, "Well, once upon a time," and you have to start the story, and they don't quite get it. And this crew, you go, " And then, this happened," you know, like, you could just pick up where you left off. They get it. (27:04): It really is life saving, and I would love to see that happen for you, if, not in person, then virtually. You know? It's something like these Facebook pages, and yeah, you're young and old people do Facebook, but, you know, was, you're still on there. I know you're on there somewhere, and you click on stuff, so I don't know you wanna give it a, a chance? Do you think you'd check it out? Courtney Arango (27:26): Yeah, I will definitely check it out for sure, um, 'cause especially 'cause I've been, I've been kind of all over the place in the past few years, so I haven't even gotten to put roots down somewhere, so I could meet somebody who's been through this same kinda thing. 'Cause the one thing (laughs) that I always think is funny, um, is whenever I (laughs) whenever I talk to somebody ... Well, just a friend, or whoever, about like, "Oh my sibling with the disability it's all that they ..." They're just like, "Oh, that's so hard." Or, "Oh that's so whatever." It's like, "Yeah, no he's still my brother. It doesn't matter how many chromosomes he has, he's still my annoying little brother. Um- Emily Holl (27:58): Yeah. Courtney Arango (27:58): ... and some of it, it's not because he has Down Syndrome, or has a disability. It's like, "No, I'm just talking to you because he's annoying." (laughs) Um, because he just ... He did something. Emily Holl (28:06): Yeah. Courtney Arango (28:06): He took money out of my wallet. Or, he and my husband ganged up on me, or whatever. So having just those normal kind of sibling relationship things to talk about with somebody else who's like, "Yeah, no." Like, "They're still just your brother is your brother, is your brother, is your brother." And, yeah. So having that with a sibling- Emily Holl (28:23): And yet [inaudible 00:28:24]. Courtney Arango (28:24): ... who's kind of sharing that would be really interesting too. Geralyn Arango Deely (28:25): Yeah. Emily Holl (28:26): Yeah, for sure. And I think another nice thing about that group is that, you know, there are siblings of people with all kinds of disabilities, and, um, you know, health and developmental and mental health concerns. And, you know, not though all of them are as independent as our brothers. Right? I mean, both of our brothers live, you know, basically, you know, independently with supports. Right? Like with staff support. Geralyn Arango Deely (28:50): Yeah. Emily Holl (28:51): And there are siblings of people who, you know, have complex medical needs, who have much more impactful disabilities and who require much more support. And so, you know, for folks who are listening who might fall into that category, um, I think it's equally important to recognize kind of what you said, Courtney, which is that, you know, it's okay to not want to live with your sibling and not want to take care of them 24/7. And I think many parents kind of struggle with that too. Um, you know, when you have a high needs child, and your thinking about the future after you're gone, which is like not a fun thing for any of us to think about. Right? Geralyn Arango Deely (29:35): Mm-hmm. Emily Holl (29:36): This is why this is like a big barrier to future planning. This is like why the- I would, I would say one of the main reasons families don't do future planning is because of that emotional barrier. Like- Geralyn Arango Deely (29:45): Mm-hmm. Emily Holl (29:46): I don't want to sit down and talk about a time when I'm not here. Geralyn Arango Deely (29:48): Yeah. I'm gonna be here forever. Emily Holl (29:48): Um, but for us, like for ... Right. Exactly. Courtney Arango (29:51): I've already decided that you're going to be here forever. Like, you ca- you can't leave me. I have too many questions. (laughs) Emily Holl (29:55): Right? Exactly. Courtney Arango (29:55): [inaudible 00:29:59]. Geralyn Arango Deely (29:55): (laughs) Emily Holl (29:59): And I think for our families especially, it's, it's important to have those conversations. You know? And to like just really tackle the tough stuff, and, and move through it so that you can put plans in place that are going to meet the wishes of all the family members. Like, including siblings, including the person with the disability and including parents. Um, so that ... I, I kind of feel like it's something that if you're lucky to have the opportunity to do now while everyone's here, you know, and to take advantage of that opportunity. So, um, ... Because that, you know, it might look different in terms of the needs, um, of the person with the disability. And so important to have a conversation as a family. Like, how do we meet those needs without necessarily, you know, impacting the future of one family member, or two family members, in a way that, you know, doesn't meet their goals and dreams. Geralyn Arango Deely (30:54): Yeah. Courtney Arango (30:56): Yeah. Geralyn Arango Deely (30:57): Does it make sense Courts? Courtney Arango (30:58): Yeah, it, it does. It's ... I mean, I'm not, I'm not re-inventing the wheel here. Um, it's, I, I'm so grateful that things like SibNet exist so that you can ask questions, you can do all these things. Its like you're so not alone with all this. Uh, it's very validating. So, (laughs) I'm excited to, to be a more of a part of it. And I'll add that right after we get off of this interview. (laughs) Emily Holl (31:21): Awesome. We'll approve it right away. (laughs) Courtney Arango (31:23): Yes. Geralyn Arango Deely (31:24): (laughs) It's me. Click. Um, huh. Yeah, uh, so I think about, you know, like there's going to be a million and six different episodes, and a million and six different angles. Like I think about financial planning, I think about all these pieces that I'm thinking about, that I'm going to pass onto you. Sorry about that. But, um, you know, h- there's ... There are things to need to know, and there are things to sort of say no, you've got to live in the today. Um, when, when you do think about, "Well, when I'm not here anymore ..." And you realize I didn't really believe I was going anywhere, but it's real, it's, it's sobering. You know? Um, but it is. And I think whatever we can do to get to a peaceful place with all that ... And part of it is really the planning and the conversations that- Emily Holl (32:08): For sure. Geralyn Arango Deely (32:09): ... really need to happen despite their discomfort. You know? Emily Holl (32:13): For sure. Geralyn Arango Deely (32:14): Yeah. Emily Holl (32:14): And there are so really great resources out there. Um, so at our, on our website, uh, we have a resources page, and there are some future planning ... free future planning resources out there for families. Um, I will say the Arc's Center for Future Planning is amazing. You can create a future plan online. There's no cost for it. But it really helps you think about, you know, all those little pieces you just mentioned. Like the financial. You know? The housing, the residential, the, the day activities. Um, benefits. Right? Like that was well- ... Or, when I was, you know, trying to ... working to, um, get my brother set up with services, the eligibility and how the benefits worked. And then you finally figured it out, and it would change. You know? (laughs) Like, the law would change. Geralyn Arango Deely (33:02): Yeah. Emily Holl (33:02): Or the- Courtney Arango (33:02): Yep. (laughs) Emily Holl (33:03): You know, it's just, it's so hard. Which is one of the reasons we wrote that book. We wrote the siblings survival guide, because we wanted it to be really kind of a one-stop shop for siblings who ... adult siblings, who were starting to think about and, um, and counter these things. Courtney Arango (33:17): Mm-hmm. Emily Holl (33:18): So, uh, future planning is, is a really big piece of that, and, um, I think you're right. I think it's not ... You don't want to be mired in this stuff like all the time. But you do ... So it's like you kind of want to set it and forget it. Right? Courtney Arango (33:32): I like that. Yeah. Emily Holl (33:33): You want to get your future plan in place. It's like a Crockpot. I mean, I love my Crockpot. Courtney Arango (33:36): Yeah, I love that. Yeah. Geralyn Arango Deely (33:36): (laughs) Courtney Arango (33:38): It's like a Crockpot, yep. Emily Holl (33:39): It's like a Crockpot. You kind of set it and forget it. And you revisit it every now and then. You know, I always say I think the other challenge with future planning is it's like you're so afraid that you're going to make this plan and it's going to be set in stone, and it feels really final. But then, I always point to 2020, when we all had plans- Geralyn Arango Deely (33:58): Yeah. (laugh) Emily Holl (33:59): ... and the universe had other plans. Like- Geralyn Arango Deely (34:01): Yeah. (laughs) Courtney Arango (34:01): (laughs) Yeah. Emily Holl (34:01): We just had to throw everything out the window because of COVID, right? Geralyn Arango Deely (34:03): Right. Right. Emily Holl (34:04): I, I think future planning needs to be a process that's flexible, and fluid, and hopefully fun. Um, I know a sibling, I always talk about her. She's like ... I love this. She, um, ... A sibling in Michigan, she, uh, has built this real community around her sister. And it's her mom, and herself, and her sister, and a lot of their women friends. They will get together like quarterly. And, um, it's, it's really this idea of having a village, and kind of thinking about who else is going to support her sister in the future. And that really involves building those relationships now. So they'll get together, and they'll on a Friday night or a Saturday night they'll have like wine and cheese. (34:48): They'll sit around and they'll talk about what's going on in their lives. So that when it comes time to support her sister, it's not like, "Well, who is she?" And, "What is she like?" And, "What ..." You know, "What supports does she have in place?" It's like, " Oh no. We're already part of her life." Like, "We already get it. And, you know, I can pick up this piece of it, and you know, my aunt can pick up this piece of it, and my girlfriend will pick up this piece of it." So, you know, I think ideally future planning is also a fun process, because you can really think about what are your goals and dreams, and how do you move towards those goals and dreams. (35:21): Um, and equally important is thinking about ... and less fun ... is thinking about (laughs) the nightmare. Like what is the nightmare, and just getting it out there, and everyone articulating it, so that you can take steps to move away from the nightmare and towards the, towards the dream. Geralyn Arango Deely (35:37): Yeah. Just really putting things out there gives you a chance to, to, to, uh, to f- internalize that. We had, when we were doing person center planning, we were frien- fans of a path. Emily Holl (35:49): Yes. Geralyn Arango Deely (35:49): Uh, and they were often taped to the wall just to ... So you walk by and you're like, "How we doing here?" And I think everybody in this life should get a path. (laughs) You know? Um, and I've dro- drawn up little informal ones from time-to-time but we would do that around Nic, and it really was helpful to say, "Well wh- ..." And it's with ... Sometimes it was a really great way to celebrate. Like, "Wow, we did that. He's doing it." Emily Holl (36:10): Nice little big old check in the box. Nailed it. Courtney Arango (36:12): (laughs) Geralyn Arango Deely (36:13): [inaudible 00:36:14] nailed it. Or nailing it, or didn't nail it. Or didn't bother to nail it. Emily Holl (36:16): We're ahead of schedule. Check. Yeah. Geralyn Arango Deely (36:18): [inaudible 00:36:18] yeah. So, those kinds of tools, there's, you know, different types of tools. But some kind of way of committing to it even on paper, or virtually can be really, really helpful, because you can go back to it, and build on it, or rip it up or whatever. So, I love that. Um- Emily Holl (36:35): For sure. And even just having all the information in one place. You know, um, we use a curriculum called, The Future is Now! that was developed at the University of Illinois, Chicago, and it's a training that we do with families. And, the outcome is that every family, uh, has a letter of intent. And it's, it's kind of of a ... It can be a notebook or a binder, or it's kind of like a roadmap for future steps. Um, and, and the idea of having all this information w- you know, what is our family story? What are our traditions? How do we celebrate holidays and birthdays? Even those little seemingly small details, in addition to, "Who's my medical provider." You know, "What is my service plan?" Um, "Is there a special needs trust? Is there, you know, a plan for resident ... Are we on a wait list? What are my services?" All of those important things to have in one place, um, is really a gift that a parent can leave for children. (37:31): Um, because part of it is just, you know, knowing ... having the information and so helpful to have it in one place. Geralyn Arango Deely (37:38): Yeah. Mine's not real pretty. It's a Google Doc. (laughs) But- Emily Holl (37:41): But I can read it, and that's important. Geralyn Arango Deely (37:42): And you can read it. You- Emily Holl (37:42): (laughs) And I ... It's ... Yeah. I'd ... Share it with me. Geralyn Arango Deely (37:42): [inaudible 00:37:44] anywhere. Yeah. Emily Holl (37:46): And that's all that matters. Geralyn Arango Deely (37:47): Yes. With the ever-present work-in-progress of a letter of intent. And the other one that's just, "Here's all the names and the numbers and, and ..." Carefully. The accounts, um, the medications, and all that. That if anybody wants to know, here they are. Emily Holl (38:01): Yes. Geralyn Arango Deely (38:01): Um, and so h- ... It's ... I actually feel better when I do stuff like that. And I just need to remember to get back and update it. But, um, that helps me. And I'm always hopeful that it helps you. And that it's not ... You're not the only person who's ... we're sharing that, I'm sharing that with, so that you know that in our own little circle, someone else can be looking at it too and saying, "Oh yeah." You know? So, we ... While we do have work to do, I'm really, you know, kind of happy that we are moving in a good direction and Emily, is there anything else I should know to support my daughter? Emily Holl (38:42): I mean, I think you have done a phenomenal job, first of all, by enabling Nic to have some independence and, um, to start to build a life of his own outside of your home, I think it's incredible and also a gift to Courtney, because that's not something Emily Holl (39:00): ... thing that she's gonna have to set up later in life. Um, I, I, i- I think you've done so many things right in terms of including Courtney in the process, um, of planning. Like you said, Courtney, I've been part of planning for a long time. Like, you've always known what's going on with Nic, and so I think sharing that information is huge. That is, we know from the research that one of the biggest ways that sibling experience really parallels the parent experience is that need for information, you know, about the disability, about the service plan. When you think about it, parent's have access to doctors and clinicians and social workers and special ed teachers, and, you know, a lot of professionals who can share that information. And if siblings are lucky, they get that information from their parents. (39:46): Uh, but we know, we, we know from not only research, but our experiences working with siblings that information sharing doesn't always happen, and it's usually for the best and most loving reasons. You know, like, the parent doesn't wanna burden their child or worry them or confuse them. Um, but, you know, I often invite parents to think about, to consider the, the idea that, you know, i- a disability is not experienced by one person in the family, right? It's experienced by all of us in our own ways, and by not talking about the disability, it really sends a message that, um, it's not okay to ask questions. This topic is off limits. You know, this is taboo. There's, there's a stigma around it. (40:33): Um, whereas if you include siblings in those planning discussions, even around, like, IEP planning, right? You know, not to, not to obligate the sibling to attend the IEP meeting, but maybe to invite them if they want to, or maybe to share their input, you know- Courtney Arango (40:49): Hm. Geralyn Arango Deely (40:49): They are [inaudible 00:40:50] parents. Emily Holl (40:49): ... they can say things like, "Well, you know, my brother Nic is, he really... This is, it really sets him off," you know, "Don't do this," or, um- Courtney Arango (40:57): Yep. (laughing) Emily Holl (40:57): ... yeah, "He communicates this way." Like, this is like, "This is how you know he's happy." Courtney Arango (41:02): Yes. Emily Holl (41:02): "This is how you know he's confused or whatever. Like, siblings, we have a lot of insights. Geralyn Arango Deely (41:07): You were always my fashion consultant. (laughs) Courtney Arango (41:07): I, yeah- Geralyn Arango Deely (41:08): Courtney was always my fashion consultant. Like, "Don't let him go out there in that," and- Courtney Arango (41:11): Yeah. I, I saved you s- Geralyn Arango Deely (41:12): ... that was very helpful. I, I miss you now. Courtney Arango (41:15): (laughs) I'll be back. Don't worry. Geralyn Arango Deely (41:16): Yeah. Courtney Arango (41:16): Hopefully, uh, hopefully (laughing) in the next month or so we'll be back. Um- Geralyn Arango Deely (41:21): Just a [inaudible 00:41:21] at this point, but yeah. Courtney Arango (41:22): (laughs) Geralyn Arango Deely (41:22): Sometimes it was great with that, with the things that the kids were doing 'cause they were in the same high school at the same time, and, you know, she was another set of eyes in the high school too. And like, "Everything all right?" "Yeah, e- everything's fine," you know? Emily Holl (41:33): For sure. Courtney Arango (41:34): I was a little spy, for sure. I was his little, well, James Bond or... (laughs) Spying and making sure that everything was okay, and having that input... Um, and I always felt really appreciated 'cause, uh, whenever Mom would ask for my input of just, "Yeah, so like, how are things doing?" Like, "Should he wear this?" It was like, these little kind of things that he- Geralyn Arango Deely (41:55): He thinks he should wear this, but hm. I don't know. (laughs) Courtney Arango (41:57): And also, like, no one wants to be dressed by their mom, like (laughing)- Geralyn Arango Deely (42:00): No, exactly. Courtney Arango (42:00): ... no teenager wants to be dressed by their mom. (laughing) Like- Geralyn Arango Deely (42:02): And I couldn't do anything about the smell of all the cologne, but other than that, you know- Courtney Arango (42:06): I did hide some of those. Geralyn Arango Deely (42:07): (laughs) Courtney Arango (42:08): Some of the ones that went missing, that, that was me. Geralyn Arango Deely (42:11): Oh, well, thank you. Courtney Arango (42:11): Um, (laughing) I will admit that. (laughs) Geralyn Arango Deely (42:11): I [inaudible 00:42:13]. Okay. (laughs) Courtney Arango (42:13): I don't feel bad about it. Emily Holl (42:16): And it sounds like Courtney, I mean, uh, I'm curious to know because you... I think we, we have had similar experiences in that, you know, I... My parents never pushed me to be a caregiver for my brother when we were young, and they always encouraged me to, you know, play sports and, uh, do all the, the activities that I wanted to do to figure out who I was and, and what I was about and what I liked to do. And I think because I had so much, um, support in, like, sort of going out into the world and doing my thing, I was always much more willing... Like, I always knew that I would do anything for my brother and that I would care for him and be there. (43:01): And I think a lot of it was because I, I didn't have pressure put on me to do that. Like, i- I felt it was my choice. Courtney Arango (43:08): Absolutely. Absolutely. Yeah, and that, having that freedom kind of have it be your choice, that was such, such a great thing that I am so lucky to have been given. It's like, yeah, no, like, I remember us sitting down and having the conversation, having a pretty in depth conversation about kind of the future of Nic. Um, and I just remember you saying like, I, you never wanted this to feel like a burden on me, and that you were grateful for what I had done, and it was very much my choice to continue being a part of my brother's life, but I never... I never felt like I, um, was kind of second to Nic's needs, ever. Even when we were going through some tough stuff or whatever, Nic had more needs. And I also think that was just part of his personality as just being a more extroverted person than I was. (43:52): Nic wanted to go bowling and see his friends all the time and do this, that and the other. Whereas I was totally fine going to Barnes and Noble or the library and getting a book, and, like, that was fine with me. But Nic, we both got our needs met and you both recognized what those needs were. Geralyn Arango Deely (44:09): Okay. Courtney Arango (44:10): So- Geralyn Arango Deely (44:12): We tried. We tried. Courtney Arango (44:13): You did a good job. Emily Holl (44:14): Good job, Mom. Courtney Arango (44:15): Yeah. Emily Holl (44:15): (laughs) Geralyn Arango Deely (44:15): Ah. Courtney Arango (44:15): Now it's recorded, so I never have to say it again. (laughs) Geralyn Arango Deely (44:19): And get this... What is our line? Is like, "Ah, you're my favorite daughter." Courtney Arango (44:23): Daughter. Whatever. Geralyn Arango Deely (44:25): Um- Courtney Arango (44:25): It's fine. It's pandering. It's fine. Geralyn Arango Deely (44:26): So- Courtney Arango (44:26): (laughs) Geralyn Arango Deely (44:28): (laughs) So Facebook group, um, SibNet, Sib20, SibTeen, what else is out there that you'd recommend that sibs maybe check out if they haven't already? The si- Emily Holl (44:43): Yeah, well, the, the listeners can't see, but I'm wearing my Sibshops sweatshirt today. Um, and you mentioned that Courtney went to Sibshops, yay. Um- Courtney Arango (44:50): I did. I did. Emily Holl (44:52): ... for the parents who are listening, I think it's really, really important to, um, understand how valuable it can be for young siblings to meet other young siblings, and to have a safe space where they can first of all, celebrate who they are as people, and discover more about who they are as people, and to talk about the ups and downs of having a sibling with a disability, um, which is really what Sibshops are all about. (45:18): Sibshops are, um, really fun, pedal to the metal events for school aged siblings, so typically between the ages of eight and 13. They've been around since 1982, and they, um, exist in about, uh, in, uh, just about every US state and 20 countries around the world. Courtney Arango (45:37): Wow. Emily Holl (45:38): And they're offered in schools and, uh, where did you do your Sibshop? Do you remember? Courtney Arango (45:43): I did mine at Easterseals I believe. Geralyn Arango Deely (45:45): I feel like it was Easterseals [inaudible 00:45:46]. Emily Holl (45:47): Yep, Easterseals is one. Courtney Arango (45:48): Yeah. Emily Holl (45:49): Um, sometimes The ARC will sponsor it, sometimes it will be a children's hospital or a disability service provider or 4H club or parks and rec. You name it, any place that you might find a kid, (laughs)- Geralyn Arango Deely (46:01): (laughs) Emily Holl (46:01): ... there's a good chance you could find a Sibshop there. Courtney Arango (46:03): Yeah. Geralyn Arango Deely (46:03): Great. Emily Holl (46:03): Um, but Sibshops are really our answer for the same kind of peer support that parents get from a good parent- Geralyn Arango Deely (46:09): Mm-hmm. Emily Holl (46:09): ... to parent program. And I know, um, you mentioned just the value of connecting with other parents and people who are walking on a similar path. For siblings, that's so tremendously important. I mean, growing up, uh, I never knew another other s- uh, another sibling, um, who had a brother or sister with a disability. And that, that could be a really lonely place to hang out. Then to feel like, "Oh, gosh. No one will possibly understand, you know, what's going on in my life and in our family, um, because they just, they don't, they aren't living a similar experience." (46:41): And so, um, Sibshops to this day are really magical places where sibs can meet other people, realize they're not alone. Um, a- again, talk about the ups and downs and most importantly, I think, um, play. We do a lot of, a lot of playing sib shops. Um, because we're working with kids, and so we want first and foremost Sibshops to be fun and Sibshops to be places that siblings wanna keep returning to, um, because they're fun and because, um, of that connection and that peer support. (47:15): Peer support's huge in Sibshops because no offense to all the moms and dads out there, but, um, Courtney, tell me, you know, tell me if I'm a little off base here, but, uh, especially young siblings really value the, um, information and advice from other, from our peers, from our friends, right? Like, who's better to tell you how to deal with someone who's bullying your sibling than the kid next to you who just dealt with that last week, right? Courtney Arango (47:43): Yeah, absolutely. Emily Holl (47:45): Um, so peer support is a really big part of Sibshops. Um, so yeah, so if parents are interested, uh, check out our website. We have a directory of Sibshops. Um, and you can search by your city and state. If there's nothing close to you, if there's no Sibshops nearby, if you wanna start your own Sibshop- Geralyn Arango Deely (48:04): Yeah. Emily Holl (48:04): ... definitely give us a jingle, and we'll, um, you know, we'll help you do that. So yeah. Geralyn Arango Deely (48:09): My goodness. Courtney Arango (48:09): Yeah. Geralyn Arango Deely (48:12): That's good to know too because- Courtney Arango (48:13): Yeah. Geralyn Arango Deely (48:13): ... we were fortunate that it was not too far away. It was just over at Easterseals up [inaudible 00:48:17] Road, um, but for others, it might not be, so good to know that we can, you know, if you're interested, you can, actually we can access the sibling experience at so many different junctures, uh, through the Facebook groups and, and Sibshops. So this is good stuff, and I thank you so much, um, and I wanna say, ladies, thank you both. Thank you Emily Holl, and thank you to my darling daughter for, um, being here today and spending time with us listeners on today's episode. (48:51): Uh, both of you are siblings. Both of you are parents. Both of you are daughters, um, and so we're all on this parallel path. Listeners, thank you. I hope you'll like and follow our podcast. I hope you'll share it with family and friends, and I really hope you'll return to listen and learn from more stories of people like you and me and our loved one with a disability on our parallel paths 'cause you're not alone. We're here, and we'll see you next time.