Geralyn Arango (00:18):
Hello and welcome to Our Parallel Paths: A Future for My Loved One with a Disability and for Me... My name is Dr. Geralyn Arango Deely, Gerry, and I'm your host for this podcast series about just what the title says, the parallel paths of family members, certainly parents, sometimes siblings as parents age or pass on, sometimes others, and their loved ones with intellectual disabilities. I'm a parent myself, and I have some questions. On Our Parallel Paths, we talk about creating a promising future for the child with an intellectual disability who is now an adult, and a promising future for ourselves as our role as parent, sibling, family member or other caregiver evolves alongside them. There's 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. I'll be listening with you. And I'll have some questions for our guests too.

Geralyn Arango (01:23):
I'm so happy to introduce today's guest, Susanne Muench. Susanne is a sibling, the sister of John who's 51 and has Down syndrome. Susanne and I go way back to the days where she supported my Nic and several of his friends. I mean, they were little guys. I was so lucky to find her, literally, at a conference across a crowded room. And of course, found her again and again on social media. Susanne is the Director of Admissions and Family Services at Melmark. And she runs Sibshops, which she'll talk about later, I hope, or if she doesn't, I will ask her.

Geralyn Arango (02:03):
It means a lot to me to invite the voice of a sibling, the story of a sibling to Our Parallel Paths. Because I believe that siblings need to share their stories. And I believe that all involved with a person with a disability need to hear those stories. So Susanne chose a few things to talk about today from my big list. She's gonna talk a little bit about whether her brother's disability changed her vision, her path, for herself, and the experiences, relationships and concerns of being a sibling as it was, as it is and as it will or may be in the future. And finally, about staying strong, supporting her own health, her own good life, as she supports her brother John. Hey, Susanne, welcome.

Susanne Muench (02:59):
Hey, thank you for having me. I'm, uh, I'm excited to have this opportunity. So, so thank you.

Geralyn Arango (03:05):
Yeah. Tell us a little bit about those things that made you, what made you choose these topics?

Susanne Muench (03:11):
Yeah. So it was quite a list of, of things that were very interesting and things that I could probably talk on for, for a really long time. But in terms of the sibling experience, I think there were a couple of things that I wanted to make sure that, you know, given this platform, I was able to sort of highlight. So, I am the youngest of three children. And as you mentioned, John is my oldest, oldest brother. He's eight years older than I am. And he is just fantastic. And my parents did a, a wonderful job making sure that he had all of the things, all of the interventions. And I was the, the little kid that loved to, to tag along to the, to all of the therapy appointments. And I felt very smart when I was able to do the things that John was learning and I could be helpful and, and things like that. And I, I do believe that, that the work that my parents put into John and his education, and his inclusion, and his opportunities really shaped the, the amazing gentleman that he is today.

Susanne Muench (04:14):
People will tell you when they meet him that he is polite, he's kind, he's very engaging, and things like that. And I, I attribute that, you know, 100% to what my parents did, you know, with him. And, you know, however, the flip side of that is that all of the, the things that, that John got meant that there was only so much time for, for the rest of us. And I do believe that in our family, we, we struggled with how to, to manage that balance. And in our, our house, particularly, too, the expectation, you know, there, there was always the expectation that when something happened to mom and dad, you know, Susanne would take care of John and there was never anything else talked about. And so, from a very, very young age, I had this understanding and expectation that when the inevitable, you know, and when you're a kid, you never know when that's going to happen, it's gonna be forever away when you're a kid, you know, but this seemed like a really big thing to, to have to take care of this person who required so much care, but there was never any discussion about alternatives.

Susanne Muench (05:19):
And oftentimes, I think, even, even group homes, you know, for, for instance, and at the time, with my family, was used as a, as a kind of threat. You know, it's like, John, if you're not good, we're gonna send you to a group home, and, and, and things like that. And I now understand, you know, looking back and having the experience that I have, know that, that group homes have had a past and, and have been challenging places to be and, and things like that. So I can certainly appreciate where, where that came from, from my parents. But it, it definitely, I think, shaped, you know, sort of what I felt like my future was going to be. And when I was thinking about life after high school, I wanted nothing to do with disabilities, or, or people with any kind of exceptionalities. I had grown up with it and I didn't wanna do it. And so I went into social work and, and I had ... I had been kind of a, a troubled teenager. And so I thought, who better to work with juvenile delinquents than, than a juvenile delinquent myself.

Susanne Muench (06:21):
And so I went into working with juvenile delinquents and I did it for a little bit of time, and I hated it. It was, it was definitely not for me. And I didn't know what I wanted to do. And so, I actually fell into quite literally the opportunity to work with people at the time with intellectual disabilities and, and putting myself through college, which is actually how I met, you know, you and Nic and your family.

Geralyn Arango (06:45):
That's right.

Susanne Muench (06:46):
I was in graduate school, trying to, to make it through, supporting myself in graduate school, and I found this amazing opportunities to support a number of families that you guys all coopted for my time which allowed me ...

Geralyn Arango (07:00):
We did.

Susanne Muench (07:01):
... through graduate school. So, so yeah. So, I eventually found my way back to that world and, and I can't imagine doing anything different now. You know, however, I think, kind of going back to some of the challenges, you know, the, the inability of my parents to be able to have further conversations with me and, and with our family about what was going to happen really kind of came to a head when my mother suddenly passed away. And mom was the keeper of all the information. She knew who the support coordinators were, she knew what waiver he had, she knew all of his medications, and all of a sudden, she wasn't there. And I had, I had been marginally involved, but I, I certainly wasn't as well versed in, in all of his care needs and things like that as she was.

Susanne Muench (07:47):
And so, in a matter of, you know, a few short days, according to our legal guardianship agreement, I had become co-guardian with my father of John and really sort of had to step in. And we still hadn't had the conversation about what was gonna happen to John. And I, you know, at this time, you know, was in a relationship. I had, you know, I was living two hours away, and just was never really quite sure how all this was gonna end other than he's gonna be on my couch or my apartment. I was living in a one-bedroom apartment, and it was like, well, what's gonna happen to John, and, and things like that.

Susanne Muench (08:25):
So, there was a lot of anxiety about that. And I think given the field that I went into, I had information but it, it didn't trickle down to this is how we're gonna work this in, in our family, because all of my options, you know, were things that I knew my parents didn't want or wouldn't want, and, and I just didn't know what to do. And I also felt like it wasn't my role to know what to do, but I, I had to, to step it up and, and do that.

Susanne Muench (08:52):
And, you know, so John lived with my dad for a couple of years, and, and I had to really watch my brother's health and my dad's health and the conditions that they were living in really deteriorate. You know, John was, wa- had become severely obese. He, he was already, you know, kind of had the, had the Down syndrome, you know, short, short and stout, you know.

Geralyn Arango (09:16):
Yup, low metabolism. Yeah.

Susanne Muench (09:19):
And um, you know, but, but dad was, dad was going to bed early and John would raid the fridge, and basically, it would be a free for all and he would hoard food in his room, and I would go and there would be mouse droppings in his bedroom, and he was unclean. And, and so, at one point, you know, I, I literally had to have an intervention with my dad and, and said, like, hey, you know, we either need to get more help or I'm gonna have to take John because this is not, this is not safe for him. It's, it's not, it's not okay. And so, that sort of started us down a path of really having to look at, you know, sort of increased services and, and things like that. And, and eventually, an opportunity for a group home came up. And again, knowing that this was something that had always been used as a threat, I was like, how can this possibly be? But I had experienced folks who were supported in these situations, and they had opportunities, they were thriving. They had staff that, that cared for them and loved them and families were still involved. And so I thought, how could this be a bad thing?

Susanne Muench (10:26):
And so, dad and I, thankfully, were able to have, you know, a couple of good heart to hearts and, and really talked about this opportunity. It helped that it was with the organization that I work for. So, I was able to, to be able to have, you know, just some more involvement with that. But we were able to talk about it in such a way where I think my father finally realized that this was an opportunity for him to know and understand what John's future was going to look like and he understood that. For me, that was really important. And that was probably the single greatest gift that my father could have given me was to know and understand that, because he got to see John transition into the situation and he saw John thrive. And, you know, medically, like, he went from having diabetes to losing 75 pounds and not having diabetes anymore. And he has more of a social life than I do. And he's, he's very happy. And my dad got to see that, which I think is, was really great.

Susanne Muench (11:24):
And, and, you know, for me, it also allowed me the opportunity to go back to just being a sister. You know, like, like, John, really, at one point, used to resent or ... I don't, I don't know that he understood the concept of resent. But, you know, I would, I would come home to visit and he used to love it when I would come home. And we would do all sorts of fun things. And as I had to take on more and more of the responsibility of making sure he was cared for, you know, he wouldn't even come out of his room when I would come home because he knew that I was going to clean up his room, and I was going to, to make him shower, and I was gonna do all these things that, that my father really should have been able to do. So, you know, now, in the situation that we're in, you know, I get to, to get back to just being the sister, which is, was pretty cool. That was a really long answer to your question.

Geralyn Arango (12:15):
It's a really rich answer to the question. And so, you know, what comes across to me is how much you love your brother and how, you know, the expectations not being communicated to you that, that slowed the process. But I'm so glad that you guys were able to kind of rally at some point. How did you even get yourself like emotionally prepared for this big shift? That your mom died suddenly. She was the keeper of the keys, you know, and you had to step up in a time ... How old were you at that point, when your mom passed away?

Susanne Muench (12:52):
It's 2011. So what is that, um-

Geralyn Arango (12:55):
Eleven years ago.

Susanne Muench (12:56):
Eleven years ago. So, 33, yeah, 33-ish.

Geralyn Arango (13:00):
Okay. So that's, that's pretty young. And it makes me think about almost like, you're kind of like a sandwich generation yourself. It's not your child, but you have your, your elderly father who was not thriving himself and a brother with a disability. And so, you really were juggling all by yourself. And so, how did you even start to think about this change? I mean, did you feel resentment, initially, or did you feel like let me just jump in? It's gotta have been complex?

Susanne Muench (13:34):
Yeah. That's a good question. I think it was a little bit of both. I mean, I, I felt like I knew enough, because I had been working in the field by then and I think I knew enough to know that, that inaction was, was not a possibility, like, I, I had to do something. And so I was able to reach out to the support coordinator. And because I had also, you know, we had had the guardianship arrangement so I did have co-guardianship of John with my father. So that allowed me access to information and, and things like that. So, you know, I, I do believe that working in the field that, that I was in afforded me a lot of the information that I knew that I needed in order to take care of the tasks. I think the, the tasks were the easy part. You know, the, the emotional part, I think, was, was that much harder, because, because of all of the things that had happened. You know, I was dealing with my own fairly significant mental health issues.

Susanne Muench (14:25):
You know, as, as all of this was, you know, happening with my brother, you know, I, I was also dealing with my sexuality. I, I do identify as a lesbian, and I came out, you know, when I was 16, which sort of rocked everybody's world, and, and no one knew quite what to do with it and, and so we just didn't talk about it. And so, I really struggled with that. And between that and sort of diverted attention, uh, you know, I was, had sort of gone down the path of drugs and drinking and cutting and, and eating disorder and, and eventually, you know, really got myself into some trouble with, you know, a fairly, a fairly significant, uh, suicide attempt, which I think sort of woke everybody up a little bit. But, you know, it made me realize that, you know, I needed to, to come up with ideas and solutions that were going to work for me long term because, you know, mom had already passed away, dad, you know, I knew he's eventually going to pass away. And if, if it really was going to be my responsibility to figure out what to do, I needed to come up with solutions that were going to work for me. And so, the biggest thing was being able to have him closer to me.

Susanne Muench (15:35):
So, you know, his, his, you know, group home was here. I grew up in the Poconos. And so, you know, having him an hour and a half closer meant that, you know, if I was gonna be needing to check in on him, I could do that. So, you know, that was really important to me. And, you know, also just to, you know, recognize that once he, he made this transition, that there was a lot of control that I had been trying to keep just to keep all the balls together. You know, his, his life together, my life together, you know, even my relationship, you know, at this point, you know, I'm in a, a fairly significant relationship. And, you know, every relationship I'd ever been in, you know, came with the understanding of, you know, John might be living with us someday and, and that's a very important thing, and we can't ever move away because I need to be close to, to where he is, and, and things like that.

Susanne Muench (16:25):
So I think having to prioritize my own mental health in this situation, while balancing what was best for him was something that I think came with a lot of support, a lot of therapy, you know, and a lot of, I think, um, compassion and grace that I really had to, to afford, not only to my parents but to myself, for not being able to provide what they would have wanted in terms of "better" opportunities. You know, I had different information than they did. And, and I was ... I made the best decisions that I could, along with my father at the time, when he was able, to provide a life that, that John was happy with, that, that would work for, for me, and would check all the boxes of, of what everybody needed in order to be happy, you know, both in mind and body.

Geralyn Arango (17:23):
Wow. That's, that's ... You really do have to factor yourself into this, because you have to be strong and you have to be able to just ... You're, you're deserving of the good things in life alongside your brother, you know? That it doesn't mean, it doesn't have to be sacrifice. And what I hear is, I do hear so much love. And I wonder, what you wish ... It sounds like I could kind of answer this by some of what you're saying. But what you'd wish you had known before all of this started? It felt like your parents didn't, like, did they need a clearer vision? What do they need to articulate more to you? What do you think you'd wished more from your own family, before this big journey even started? It sounded like you were the assumed person.

Susanne Muench (18:10):
Mm-hmm.

Geralyn Arango (18:11):
And that was it.

Susanne Muench (18:12):
Yeah.

Geralyn Arango (18:15):
And so, the person needs a little info.

Susanne Muench (18:17):
Yeah, not only info, but it would have really, I think, been, you know, appropriate to have me be part of the conversation. I think sometimes parents try really hard to shelter kids from the information and the experiences. But in the absence of information, like we conjure up things in our head and, and we have worst-case scenarios about what's going to happen, and when you're not having the conversations with your other kids, you know, whether it's explicit, like, it was in my family of, Susanne, like, we are expecting you to take on this responsibility, or, you know, parents just don't have the conversations at all, and, and just say, oh, we'll take care of it. If the other siblings, you know, are not involved in the conversation, then it really becomes challenging for them, because they're managing their own anxiety about what's gonna happen and also trying to, you know, in some cases, you know, figure out what the right thing is based on what, what parents are wanting or not wanting. And I think that ... And obviously, you have to be developmentally appropriate about that, right? So, you're not going to have, you know-

Geralyn Arango (19:22):
A state of a 12-year-old. Yeah.

Susanne Muench (19:24):
You know, with, with a very young child. But, you know, I feel like ... The one thing that I think has changed significantly, and I've seen this in my work with Sibshops, um, and Sibshops are an amazing resource, which I totally wish that I had had when I was younger. But one thing that I'm finding in, I think we're in our ninth year of, of running these is that I think that the world of siblings and the information that parents now have about what's available has increased and, and parents have been given more support in, in being able to even think about different options. You know, when my parents had John, having a, a, a young man with Down syndrome, I mean, they, they immediately said, well, you should put him in a home because he's, he's not going to be a value, you know, and it's going to be difficult for you. You know, obviously, that no longer happens. And, and so when families are empowered to sort of look at all the different possibilities, I mean, there are, there are lots of different ways that you can support someone with the kinds of, you know, exceptionalities that, that our folks have. You know, in-home, out-of-home, you know, with support, and things like that.

Susanne Muench (20:30):
And so I think that empowering families to be able to look at all the options, but then be able to discuss those options with the entirety of the family, I think, is really important, not only to make sure that the expectations are clear, but also, I think, so that siblings understand that, you know, it's not all on them to, to figure out. So if it can be more of a conversation versus a mandate, I think that's something that I think is super important. And I've seen that happen more and more. And, and I think that's because of the work that we're doing just in general in the community at large, but also with some of these supports, like Sibshops and, and things like that.

Geralyn Arango (21:11):
I think about what you're saying about things being sort of developmentally appropriate, because I know my own daughter, I think about, well, what should I tell her now? What should I tell her now? You know, as I'm kind of sharing more information, what should I be talking about now?

Susanne Muench (21:25):
Right.

Geralyn Arango (21:25):
You know, they were down last week, and I thought, oh, what should we talk about, you know. And so, what ... I guess the conversation really does have to evolve. I also think it has to come from a vision that the family itself has for itself, as well as for their loved one with a disability. And so, that kind of informs what everybody's talking about.

Susanne Muench (21:48):
And that changes for every family too. Like I recently had a conversation with a family where they were really ... They were talking to me about the idea of, you know, Community Supported Living and, and things like that. But they had just had a conversation with someone else who said, oh, no, absolutely, you shouldn't do that. But I was reminding them that, like, the reality of their family, where there's only one other sibling and no other supports, versus this other family where there's lots of siblings, lots of extended family, like, it's okay in that situation to say, well, why would you do that, because you have a seemingly unending amount of people that can help out versus this other family that doesn't have that. And so, it's so incredibly individualized based on, you know, the family's own resources, both like, you know, physically, emotionally, financially. You know, it's, it's definitely a tricky conversation to have.

Geralyn Arango (22:40):
Yeah. Yeah, and that's, that's so true. You really can't sort of say this is the answer for everyone? Or say, well, since this is the answer for us, this is the answer for you as well. It is a delicate balance and it also has to do with the resources that are available. And, but I also, I do think that families get to say, in my perfect world, this is what I want and I'm gonna get as close to it as possible. And I feel like so often, families are told what they can do. It's, it's ... And so, I don't know what, you know, the messages of a person who's 51 as opposed to a person who's 21 are getting such very different messages, I hope, you know, um-

Susanne Muench (23:16):
Right. Absolutely.

Geralyn Arango (23:17):
And their families are getting different messages and different and greater choices. So, it is complicated, but the communication seems like the thread that runs all the way through it. And so, let's, let's shift over a little bit. Actually, no, I have a question. Tell me something, in all of this, something that you feel like you're proudest of in these years where you made this transition from mom and dad to dad, to, to you and John. What are some thing(s) along the way that you feel like, yeah, well done me? Pat, pat on the back.

Susanne Muench (23:51):
Yeah, I think, you know, you know, after John moved into, into the group home, we, I did end up working really hard to move my dad closer too so that, you know, I had both of them here and really was able to, I think, create this system of support where my dad was able to see John and I, but John sort of had his own, his own life and, and I had my own life and, and I had ... You know, I am, I am so ridiculously proud of the fact that I survived myself. I think there was, there was a, there were a lot of times where that was in question, but I worked really, really hard on getting myself both physically and mentally in, in a place where I was just a better human being. You know, I wanted to, to be able to make better choices for myself and, and be there for my brother and, and be there for the people that, that were in my world. You know, I have a very small, small family but my, my friends and the people that I've supported, that I've allowed to be in my world as a support has been really, really important. So, I think I'm really proud of, of that, but also, the biggest thing, I think, is being able to give up control.

Susanne Muench (25:03):
I have recognized that, you know, there are things and, and ways that I would take care of my brother that, you know, are, are absolutely should be the way that he should be taken care of. And, you know, there are times when I look at how other people care for him, and I'm like, oh, I wouldn't do that. But then I really have to take a step back and say, okay, well, it's not how I would do it, but, you know, it's getting done and he is ... I mean, there are times when he is, you know, I'll tell him that he's coming for a visit for the weekend and he's like, "Oh, just, just two days, right? And then I get to go home?" And I'm like, yeah, yeah, thanks for making it, you know, thanks for ... Yeah. But, like, how awesome is that?

Geralyn Arango (25:43):
Yeah.

Susanne Muench (25:43):
That, that he has this place that, that he wants to go back to and he feels loved. And, you know, so I think, you know, I'm, I'm also most proud of being able to give up some of that control, because it's allowed me, again, just to go back to being in that sibling role, and, and, and that's really where I wanna be, and I didn't kind of get to be for so long because I was, I was, you know, caring for him. And in a way that I ... I mean, I would do it all over again. And I do, I absolutely, I love and adore that, that, that gentleman. And, and he has definitely shaped a lot of, of who I am now. But it's, it's nice just to be able to be the sister and to say, hey, go back, and, and have them take care of you and be mad at them for making you, you know, or helping you to, to clean your room and, you know, things like that, so.

Geralyn Arango (26:28):
Yeah. I love that, I love that. The love just kind of pours out of you with, for John, for John. And tell me more about you taking care of you in all of this and how that sort of journeyed along with that, and what's keeping you strong.

Susanne Muench (26:44):
Yeah, yeah. You know, one of the, the biggest things is, you know, I saw both health-wise, you know, with my parents, both of my parents struggled with all of the high things, high blood pressure, high cholesterol, diabetes. And I remember at one point, you know, you know, John was very overweight and he had diabetes. And, and I was, you know, at, at one point, you know, I was 315 pounds, you know, and I was very unhealthy and, you know, I sort of saw what was happening to them. When my mom passed away suddenly, that was kind of a wakeup call. But I realized I was like, I don't, I don't want this to continue. And so, I did a lot of work on myself and, you know, ended up losing 125 pounds. And now, you know, I've been able to maintain that. But now, I, I am a multisport athlete. So, I do a lot of ... In the world of triathlon, when you, when you don't wanna run, you do what's called aquabikes, which is the, the swim and cycle portion of the, the triathlon. So that's what I excel in. And I love open water swimming and biking.

Susanne Muench (27:45):
And, you know, I always say that, you know, I work out for the benefit of other people. I'm a much better person when, when I've worked out and I've had that outlet. But, you know, I've taken control of knowing that, you know, I'm not going to go down, you know, the same path. I mean, obviously, there's genetics and, and things like that. But, you know, John was able to lose weight. He's no longer diabetic and, and he's doing great. I've never, thankfully, you know, been diabetic. But, you know, all of that, that physical health and, and mental health, like I am a firm believer in counseling and, you know, I think it's great, I think there's lots of amazing resources to, to support people in the journeys that they're on to, you know, help improve their already awesome selves. But, you know, I think that, that being able to take advantage of, of those opportunities make me a better person, make me a better wife. I have an amazing wife, five cats that, that depend on me to, to wake up and feed them and, you know, do all those, those things.

Susanne Muench (28:45):
But it's truly about, you know, knowing that, you know, because I made all of these choices to take better care of myself, that I am also able to, you know, affect change not only in my own family, but in the work that I do. I mean, I absolutely am passionate about working with families who have, you know, folks with, with special needs and siblings and things like that. And so, because I've been able to shift my focus of this is something I wanna do versus something that I had to do, it allows me to be that much more passionate about how I do it and, and the way that I'm able to do it. And I have to be physically and mentally healthy enough to, to be able to do that and to sit next to people who are struggling just the same way that I did and, and really say, okay, we're in the muck but let's, let's take a step back and look at all these other possibilities that there might be if, if that feels right for you. So, it's all come full circle, I think, for me in, in terms of, you know, not, not ever wanting to, to work in this field, but realizing that this is exactly, I think, where I'm supposed to be.

Geralyn Arango (29:55):
Yeah. Yeah. It sounds like that to me, because you bring so much as a person, as a sibling, as a professional, you know, all the hats are, are there, and they give so much to others. And so, it sort of seems to reciprocate, you know, that this keeps me strong and I bring strength to the situation too. And I mean, even the Sibshops sharing. I believe Courtney went to your Sibshops a little bit, too.

Susanne Muench (30:20):
Mm-hmm, yeah.

Geralyn Arango (30:21):
You know, and she always had fun. And it was ...

Susanne Muench (30:22):
Yeah.

Geralyn Arango (30:23):
... sort of peripherally at that point, anyway, about being a sibling of a person with a disability. But everybody in the room had a little bit of that story. And so it was this comfortable place too.

Susanne Muench (30:34):
Yeah, yeah. And it was a place, I think, to, you know, that Don Meyer, who started Sibshop, you know, he, he always says, you know, it's, you get to talk about the good, the bad, the ugly about, you know, having a sibling. And, and so, it is a safe place for people to come in and say, you know, it is hard when mom and dad or, or whoever the family is can't come to my games, or, you know, when my sibling is hitting me all the time, or, you know, having to worry about what's going to happen. And so, it really is a space for them to, to not only come together and have fun, but to also talk about those experiences that other kids may, they may not have, they may not have exposure to other kids who have those same experiences.

Susanne Muench (31:12):
And so, to be able to, to see the looks on their faces when they hear someone else say, "Oh yeah, like, I have to deal with that too," is, is really great. And, and they may not be able to have the, the in-depth conversations about how they feel about it, or what it means, but they know they're not alone. And, and I think that's the biggest, that's the biggest takeaway. And, and I always emphatically thank parents when they make these opportunities available to kids, because I know that, you know, families are running around, doing lots and lots of things. But the fact that they've prioritized this and they understand that this group is, is important really means a lot to me, and I think it also translates to meaning a lot to their children too.

Geralyn Arango (31:51):
Yeah, yeah. Somebody said, yeah, we, we realize this is, this, their story's a little, their path's a little different from early on, because later on your path may really be different, you know? So other resources that you recommend? Sibshops, certainly, if you can find Sibshops in your area to start the conversation young for kids to have that safe, fun, accepting space. Are there other things, books, movies, I don't know, other experiences-

Susanne Muench (32:16):
Yeah, there's lots of, there's lots of resources now. I feel like there ... I actually, I just got finished reading. It's actually a young adult book. I think it's been out for a while, but it's called Rules. It's written from the perspective of a 12-year-old, I believe, who has a brother with autism. And, you know, there are ... You know, the internet has done a lot for being able to connect people together ...

Geralyn Arango (32:36):
Yeah.

Susanne Muench (32:36):
... in terms of, of Facebook groups and, and things like that. So, I think there's a lot of resources now that are available, not only for siblings, but also for families to be able to support siblings in those more developmentally appropriate ways. And, you know, I think those things are, are really important. It's really about just having the conversations. Whatever, whatever allows you to have the conversation about, hey, we've got this situation, right, and we're all going to ... They say siblings, you know, you're gonna be with your sibling longer than you are most times with, with your families and things like that.

Geralyn Arango (33:11):
Parents, yeah, yeah.

Susanne Muench (33:11):
So, being able to have the conversations, but also check for, for understanding. You know, what is it that your child is hearing about what the expectations are? Because you may not be thinking that you're implying that there's this expectation, but what are they hearing and what are they putting on themselves? I worked for a long time with a young lady whose family was very clear that it was not her responsibility, but she, she felt like she still needed to sort of have that, you know, in the back of her mind, and that really guided a lot of the choices that she made as she got older. And so, even though the parents weren't putting that, that expectation on her, she was taking it on herself. So not only being able to be clear in the conversations that you're having, but also check with your, your other kids about what they're hearing and, and what their fears are. And you may not have all the answers, like so many times, you're not going to have the answers. But if you can at least have a conversation ...

Geralyn Arango (34:08):
Yeah.

Susanne Muench (34:08):
... you know, I think that, that is, is just huge, absolutely.

Geralyn Arango (34:13):
Because it may not be this big, grave situation. But it may be, yeah, you know, here's a moment, here's a moment, here's a moment, and grabbing those little moments. And so, it's such a delicate balance. But I really wanted to, to talk to a sibling, hopefully not my only sibling that I would get to talk to, because I think this is an, an important voice. Is there anything else you'd want to share that ... You, you kind of hit all my questions and so I'm wondering if there's anything else that you would want to share. I was gonna ask you about a time you felt like, oh, this did not work out and how you handled it. Because sometimes people feel like, well, well, you know, I could never do this. I hear that about our own path at our house here about, you know, trying to get Nic to live in this house with a friend and supports and people saying, oh, I could never, my child could never do that, or I could never do that. And it's like, well, it's a work in, it's all a work in progress. And you're gonna have, you know, two steps forward one step back. I don't know.

Susanne Muench (35:15):
Yeah.

Geralyn Arango (35:15):
Did you have moments like that, where it was like, well, that didn't happen? And what did you do, you know?

Susanne Muench (35:19):
I don't know that there was a specific moment like that. I mean, I think that once ... Well, I should say, actually, when John was still living with my father, we did try to, to kind of have additional supports that were, were made available. But again, they lived in a very different sort of geographical location, things were a lot further away, and it was really hard to, to find people that were able to, you know, kind of care for him. And we had one person that was gung ho about taking care of him and took on lots of hours. And then John would come home and say, "Oh, you know, we went to the hair salon, and I saw, I waited there while she got her hair done." And I, we did this, and we did that. And, you know, John was reporting all of these things. You know, it sounded like, you know, he basically just went on all these errands with her.

Geralyn Arango (36:07):
Mm-hmm.

Susanne Muench (36:08):
And while I don't think that he necessarily minded that, it was just not a good use of, of his time and resources. And so, you know, we, we had to have a conversation about, you know, particularly with my dad, because he was like, well, she's a body and she's available. And I'm like, yeah, well, but that's not-

Geralyn Arango (36:23):
Let's ramp it up one.

Susanne Muench (36:23):
Yeah. Um, so that was something that, I think, you know, we tried. And, and again, I tried to be respectful of my father and, and the decisions that he was making. But, you know, I think we, we realized quickly that that, that wasn't going to work either. And so, had to pivot, you know, we're always pivoting, being with the next best solution is, so.

Geralyn Arango (36:43):
You know what, maybe that's just part of the game. You know, that's part of the journey, is that you're gonna, you know, like Bugs Bunny says, like, a left at Albuquerque, you know. And just, and kind of saying, you know what, we took this as far as it could go, and then, and then it's okay to change course. And we're not going to be perfect, but we want to be sort of planful and kind of intentional about things, I guess. What's next for you guys?

Susanne Muench (37:07):
Yeah. That, that is a loaded question. We are ... So, with folks who have Down syndrome, dementia comes early.

Geralyn Arango (37:14):
Yes, yes.

Susanne Muench (37:15):
And, uh, we are, we are starting to see, um, early signs of dementia with, with John. And so, you know, there's been lots of conversations just about what this will look like. And, and for some people, this, this happens fast, like we're talking, like, one or two years fast, where there's a very significant decline. And so, you know, I've, I've really gotten to the point where I've stopped spending my energy fighting the system. You know, I'm like, okay, well, I don't care how many outings he goes, you know, he goes on and things like that, is he happy, you know? Is he happy? Does he, does he like his life? He, and, and he is. He is very happy. And so for me, that is, that is everything. And, and so, you know, I get to see him a lot. He lives, you know, a half an hour away. So he comes to, to my house, you know, to hang out here with my wife and I. He, he does get to see, you know, other family.

Susanne Muench (38:06):
And, you know, so what's next, I think, at this point is really, you know, I think enjoying the time that, that we know we have left together, but also celebrating just how far he's come as an individual that has had to battle so much and, and conquer so much. You know, my battling and conquering and, and just really, like, looking back at ourselves as a sibling team and say, like, we did okay, you know, and, and mom and dad would be really proud of, of the, the people that, that we've become. I, I know that they were always proud of him. But I think for me, even knowing that I made choices that maybe they wouldn't make, like, I feel like they would look at us now and say, you know, we, we did okay. And I feel very, I feel very content with the path that we've taken together as a team along with the support that I have in others. You know, we just, we keep living each moment. I've learned to not get too far ahead of myself, because you miss a lot along the way when you do that.

Geralyn Arango (39:11):
Oh, my gosh. I'm so glad you- you're being on our little podcast here. I'm so glad. Thank you. Thank you ...

Susanne Muench (39:18):
Thank you.

Geralyn Arango (39:19):
... for sharing this story. And, and I've always wanted to have this conversation with you and now it's recorded for posterity.

Susanne Muench (39:25):
Excellent.

Geralyn Arango (39:26):
Yeah, yeah. So, so Susanne, thank you so much for taking this time to share your story, share John's story. And I'm gonna say to the listeners, thank you for joining me on Our Parallel Paths today. I hope that you will like and subscribe to our podcast and I really hope that you'll return to listen and learn more from stories of people like you and me and our loved one with a disability on Our Parallel Paths. So see you next time.