In this episode we discuss some ways that siblings of individuals with disabilities can experience grief & loss throughout their lives. We also discuss various resources and methods for dealing with different forms of grief & loss. The sibs also share some of their favorite memories with their siblings that they have lost.
"When my brother passed away I felt immediately lost. Not just the loss of him, but lost." -Tara Conley
Our guests in this episode are:
In this episode:
Access the transcript of this episode here.
Some resources discussed in this episode are:
In this episode we discuss some ways that siblings of individuals with disabilities can experience grief & loss throughout their lives. We also discuss various resources and methods for dealing with different forms of grief & loss. The sibs also share some of their favorite memories with their siblings that they have lost.
"When my brother passed away I felt immediately lost. Not just the loss of him, but lost." -Tara Conley
Our guests in this episode are:
In this episode:
Access the transcript of this episode here.
Some resources discussed in this episode are:
Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information support and tools to advocate with their brothers and sisters and to promote the issues important to us and our entire families. Hello, and thank you for joining us for another episode of The SLM Podcast. Today we will be discussing sibling grief and loss. Today I'm joined by Tara Conley, Nora Handler, Zach Rossetti and Shruti Tekwani. Hello, and thank you for joining us today.
Tara Conley:I thank you. Hi. Hi.
Chris Berstler:So I'm just going to start off and ask you to briefly introduce yourselves. Tell us what you do. And what led you here.
Tara Conley:I'm Tara Conley, and I live in a Chicago suburb and obviously in Illinois, soon to be moving to the great state of Iowa, I have worked in the field of developmental disabilities for well, more than 30 years. But the last shoe about two years, I have dedicated my time solely to the organization that I co founded with Nora handler, supporting Illinois brothers and sisters, and I am the consultant. And I help run the organization and bring in as many resources as possible. But again, I worked in the field of DD, for more than 30 years, I started at the age of 16. And the reason for that was because I have a brother, who passed three years ago with developmental disabilities, neck, and she's really the one that I wanted to do this work for. I wanted to know everything that there was to know about the field, so that I could help my brother, my mom relied on me a lot for information and just support. After graduating college, I found a job in the field, and have been doing that role ever since ended up finding Nora and a bunch of other siblings that were like minded like me. And in 2007, we started the nonprofit supporting Illinois brothers and sisters.
Nora Handler:I never worked in the field. I have lots of different jobs, but none of them in the field. When my mom passed away, in 1998, all three of my brothers were living with my mom, I'm one of eight siblings, two of my younger brothers were diagnosed in the 60s. And my brother Marty never had a diagnosis until he came to live with us after mom died. And we helped him get his diagnosis, which was autism. And my brother's really all had autism, as autism wasn't well known in the early 60s. My so three three guys in my family have autism. And I also I have a nephew with autism. So I guess it was the journey, the journey of being involved really started when my mom passed. And my older sister and I didn't know anything. And we had talked to our mom, she did have health problems. My dad died very young, we started realizing that we don't know anything. And we, you know, asked her, What are we going to do when something happens to you? And she said, Don't worry about it. It's all taken care of. And she wouldn't talk to us about it. We discovered it wasn't all taken care of. And my sister and I decided to divide and conquer. And at that point, she was going to take all the brothers in with her and her husband. And I was just going to temporarily do it with my brother Marty until they built onto their house. So I started getting involved in, you know, learning about organizations that support people with disabilities. And I stumbled across slipknot. Oh, actually, I I didn't my sister found at first and she called me up and said, Oh my god, there are other sub brothers and sisters. And so that was that was that long ago and it wasn't on Facebook. It was a list serve a Yahoo listserv. And I was instantly addicted to it. You know, we would read everything and ultimately that's what led me to Tara. So I've been on multiple boards and advisory committees. My did leadership training through the University of Illinois And so that's how I got really involved. And it was pretty devastating when we lost our siblings. I've lost three of my eight siblings, all within the last five years. First my brother Patrick, which was a freak accident, then my brother, Michael, um, which was complications, medical problems, probably related to his cocktail of psych meds, and, and family history. And then I lost a typical sister. After that, all before 60. This brief stuff is really important to me. And it's been helpful to me. So I want other people that have something,
Shruti Tekwani:I'm Shruti Tekwani. And I also don't really consider myself working in the fields. Oddly enough, I have one sister with cerebral palsy who's four years younger than me. And we both born in India, where the resources were kind of limited at that time. She was diagnosed when she was two years old. And there wasn't really much to the diagnosis. It was just at that time, it was, Oh, she's a special child. And that's it really, there wasn't anything much to it, except let's deal with it as it comes. We moved to the Caribbean when I was six, and she was four. And I got enrolled in school. And we had to find a special school for her. And I grew up thinking that that was dead, right like that. We were it because we were connected to some family members here on the island. But we didn't have too many friends or family members here. And we were the only family we knew that had a child with a disability. So all my life, I just thought this was how it is. And we're very isolated. And there's no one else like us. Now as an adult, I can look back and say, yeah, there were some other kids with CP and there was some autism in there. And there were all these other developmental disabilities. But as a child, I mean, she was unique. It wasn't until I graduated college that I started to feel like I went to college in Boston, and I was away from my family. And it wasn't until I graduated, where I started to feel this different type of loneliness. Because I say all the time, if I had to describe my growing up into words, it was loneliness and guilt. Those are the two emotions that just kind of made me, me. And when I when I was in college, I felt anything but lonely, was wonderful. I got to be myself, I got to find myself. I missed her a lot. And there was a lot of guilt in that to being away from her. But I really found myself in those four years. And it was after that where I started to kind of wonder about my role in her life and where it was going, what I was going to do. And I started to seek out other sibs. And I did a search a very if that time there was Facebook was just coming up as well. So I think I did a Google search didn't really find much. And that's it. And I figured, well, you know, that's how it is for us. We kind of just deal with it, we accept and we move on. And it wasn't until over 10 years later that I found the sibling leadership that works and realize that it was a conference here. And then I got super involved. And I haven't looked back since for work. Oddly enough, I am a mental health therapist and a life coach. And I say, oddly enough, because I always had this need to understand people. And I always had this. This want to figure out why people do what they do. And my parents say that that came at a very young age. And I always said it was because I wanted to understand people like my sister. But I think it was more to try to understand people who didn't understand my sister if that made sense. So if it makes sense at all, I was I was more focused on why other people don't seem to get it or why they don't seem to want to help or be a part of the community. I became a trauma and grief therapist because I always say that I think I have been grieving most of my life. And I didn't even know it. Because while my sister is still with us, I do believe I was I was experiencing disenfranchised grief, which I'm sure we'll talk about. So yeah, a very big part of my life.
Zach Rossetti:Hi, everyone. My name is Zach Rossetti. I'm on the SLN board as co chair of the research committee, and I'm on the Massachusetts State Chapter of the FSLN, the Massachusetts sibling support network as a board co president. My day job is as an associate professor of special education at Boston University in Wheelock College of Education and Human Development, and in my research, I focus on friendships between people with and without intellectual and developmental disabilities, family professional partnerships during the Special Ed process and sibling roles and relationship, some definitely in the fields. All of that is directly attributed to attributable to, and motivated by my brother Todd, I'm the oldest of six in my family, and actually 10. If we include a step sisters and brothers, my brother Todd is the fourth. He was huge Boston sports fan. We're from New Hampshire and the Boston's team with Boston teams are our teams. He had a huge sweet tooth, he was incredibly outgoing. And which was always impressive, because he doesn't speak, he has cerebral palsy, we'll probably get into more of this, but I grew up with lots of caregiving as the oldest to kind of thought that's what I should do is the oldest. You know, looking back, there's probably lots of stuff there. I, I definitely could have used the sim shop. When I was growing up, I I attended a sim shop training to learn how to facilitate them, probably, I don't know, five, seven years ago, I swear, I, you know, I was I was supposed to be there demonstrating, but I got so much out of just that, like half hour of demonstrating. And one of the key benefits of SIP shops is just kind of the informal connections you make. And there was someone else like an 11 or 12 year old girl who had a sister with CP. And she, I told the story about going out to dinner with my brother when we were younger, and you made lots of noise, and people were looking and I felt awkward. And she came up to me and said, Oh my gosh, my sister does the same thing. Like we were bonding like, and that was amazing. I had to remind myself of the day, Todd, you know, started encountering some of the health problems that some adults with CP do. And he he for about, I don't know, five or six years has his his health was declining. And there'll be three years ago and on April 5, so is April 5 2019. He, he passed away and so that's why I'm here today. And and it's a little tough to talk about still, it's still pretty close, but I'm excited to talk about it. With my fellow panel members who are incredible in you know, they're trying to be a benefit to those who listen.
Chris Berstler:What is your personal experience with grief as a sibling of an individual with disability.
Nora Handler:The losses of my siblings were different. My when I lost my brother, Pat, as I said, it was a freak accident. Nobody's fault. Just a really bizarre freak accident. I had just been with him days before. He was getting excited because Christmas was his big thing. And we were just talking about our family Christmas and it was the day before my birthday. So I always remember the date. And I got a call and they didn't want to tell me over the phone. But I knew something was really bad. And an unknown person that waits. So I badgered them. And I knew before I left the house that my brother had died in an accident. And so I jumped in the cab and went over and and found out the details. And I mean it was just unbelievable. You know, there wonder Imran Khan and it was really hard. I was his co guardian. I saw him every week. Usually it was lunch. Um, he loved to eat. And he particularly liked to be cheap. So I like that I pay. And he was a flatterer. And you flattered everybody. I mean, if he couldn't find a reason he'd find it. Love your shoes was sort of like I didn't know what to do with myself. The next brother, he wasn't as much of a surprise because he had health problems. But we didn't think it was going to happen when it happened. He was supposed to get a pacemaker and an ablation. He was in the hospital for two weeks, he had a complication after the ablation through a clot, and I was in the situation where I had to make a split decision as to whether or not to put them on a ventilator. And I didn't want to, I called my husband who was a doctor, and he kind of helped me make the decision to do it. And so I did, and I didn't leave him for 14 days, except to go to the bathroom. And we couldn't get him off the bed. And we knew he didn't want to live that way. And we did the best we could as far as helping him make his own decision. And so we, we, we took him off the event. And he, he, he made it for about a day. And it was pretty tough. And he was a sweetheart. He was the baby. And then at last a typical sister. Another year later, just hard. Oh, the hearse was sudden. And diversely which is great. But, you know, she wasn't 16 Or she was 59. So they all died young. So it helps to be with other people. And I feel like it's a different thing. You know, I used to call myself, a sister mother, especially those of us that are taking care of ourselves after our parents pass. It's a different role, you know. And so it's a huge hole. It's always a hole to lose a sibling. And now I know that kind of know the difference between losing my disabled brothers and losing my typical sister. None of it's easy. But I didn't take care of my sister.
Tara Conley:Yeah, Nora and I, she's helped me a lot get through it. So what would happen with my brother, Nick is, um, he ended up getting, I really relate to music because my brother has CP as well cerebral palsy. And probably about five years prior to his death. He, we had found out he had severe lung damage from aspirating food and liquids that apparently we never knew, for most of his life, and that's why he had he had continuously gotten pneumonia. And we couldn't figure out what was going on and why it was happening. So often, the more that ammonia didn't help his lung damage, or disease that they called it either. So it was decided that he would get a a G tube, which that absolutely killed me because one of my brother's pleasures in life is eating that he loves to eat. That's his favorite thing to do. And I'm like, Oh, this is gonna kill him. You know, this is just he's not gonna deal with it. But he did. I couldn't believe how well he he just dealt with it and he you know, cuz he would reach out for other people's food. And he didn't really do that. He seemed to understand, you know, either his nonverbal as well. But very social, too. He just has he's he didn't struggle with it. The Jeetu just never seemed to work properly for him and he was still getting backups from it. We could never figure out the right flow. Eventually, why did it happen? He had been in and out of nursing homes for quite a while. Just trying to figure out this G to T eventually developed pneumonia from it backing up. Unfortunately, he was at an ICF at the time and in intermediate care facility, it was pretty, it was hard because we're not quite sure that they treated him correctly with the Jeetu. He was often found in his bed, laying down flat or scooted the bed might have been lifted up. But then he was scooted down. And so he was getting that backup from the the G tube into his lungs, which we didn't know what was happening. And by the time we knew it was happening, it was too late. He had gone to the hospital with severe pneumonia. And then as the days kind of went on, that he just wasn't getting getting any better. I had to be the strong one. Loving the strong one. Eventually, we decided that we were just gonna put him on hospice. What do you think you should do? Tara, what do you think we should do? Oh, my wife, just my decision. So anyways, we did do that. And then he only lived through the night, you know, by the next day, he wasn't even in hospice for 24 hours. Any past but I think, honestly, he was ready. I think he was tired. And I think he saw my my how my mom struggled just with everyday things.
Zach Rossetti:My brother was 39. Um, I there i It sounds very similar. I mean, he part of his decline was, you know, needing to get a G tube as well, because of aspirating and getting pneumonia and problems related to that. And as I mentioned, he had the huge sweet tooth and that was, you know, something we felt awful about. Our mom is a nurse and stepfather are both nurses and has the sibling I realized that, you know, for them to say like we need to do this. It was serious, you know, over the course like I said, it's a little foggy, I probably should have looked it up. But over the course of I don't know what it was five or six years he was in the ICU for extended stays three times at least three mom and made the decision to put him on a ventilator. And we thought that was going to be good. He recovered. He was in and out of the hospital. It kept increasing and towards the end almost monthly. I mean, my mom and stepfather would go on vacation, and they'd end up in the hospital and Cape Cod and Massachusetts. We decided to do he loved the Boston Red Sox. And one of my brothers works for the Tampa Bay Rays. And so in March of 19, less than a month before he passed we we went to spring training Red Sox at the Tampa Bay Rays did a trip. And I'm so glad we did and but during that trip we all and taught ended up in the hospital. In Florida. We all we had dinner in the hospital room and breakfast in the hospital room and you know, so I don't know, I mean, siblings, you know, know this, like you kind of roll with it and and try to make it work and support everyone during that time. And that's kind of what we did. It wasn't a surprise. And but it's this weird kind of gradual getting used to the idea that this is not going so well. And and eventually, this is going to happen. We don't want it to happen. And then how do you like maximize the fun or positive while you're still alive when he seems like he's in pain or he's tired and some of it's in the hospital and so that it was a very, I think I'm glad to have the long process. But it was a very strange and difficult process.
Shruti Tekwani:So I am fortunate. My sister's still with us, like I mentioned that my experience with sibling grief is more in the work that I do. So I have been privileged to be invited into some very personal spaces, like this one, where sibs are talking about the losses of their siblings. And it is it doesn't matter how many times I've heard the stories or how well I notice it. It just it's always heartbreaking. They're never magic words to help it. Every experience is personal. Every experience is different. There's so many different layers to the grief. But my experience with grief has been mostly trying to be there for other people through it.
Chris Berstler:Thank you all very much for sharing. So grief and loss are not always associated with death for siblings of individuals with disabilities. Grief and a sense of loss can be commonplace as we grow up. Two major types of grief, one that you had already mentioned Shruti is disenfranchised grief. And then there's also survivor's guilt. Let's start with disenfranchised grief. Can you explain what that is and how maybe that has shown up for you in your lives.
Shruti Tekwani:Of course, disenfranchised grief is basically grief, that's not typical, is grief that people might not understand or even recognizes grief. It happens when a death does not happen. So being diagnosed with an illness or the end of relationship or a move, or any any sort of lost really, where there's no desk that's occurred. And I think, at some point, all sibs have experienced disenfranchised grief. And a lot of sibs have described it as this, this feeling, and they can't put the can't put a finger on it, but it's just this weird feeling in them. That doesn't make sense, because a lot of us have siblings in front of us, and we can see them but yet we feel like we're mourning something. And a lot of times for sibs, it's a relationship that we never had, that we were promised from ourselves. And then for a lot of us, it's also mourning, the loss of life that we thought we would have, a lot of us have made sacrifices, a lot of us have put things on hold for ourselves to take care of them, for our siblings. And so that also is a form of disenfranchised disgrace. And then moving into survivor's guilt. It's what I describe as this, again, guilty feeling for having abilities that our siblings don't, for having all this opportunity and talking about ableism, that's, that's hit that hits you really hard. Because here you have every opportunity to do whatever you want to. And then at least for me, I look at my sister and think, Well, what makes me worthy of this and not her and how come I got to have the ability to walk and run and swim and do all these things and express myself and travel the world and work and experience life really, and she doesn't. And a lot of times survivor's guilt comes with this pressure that we put on ourselves to to be worthy of what the other person didn't have. So survivor's guilt is very common, you know, sole survivors of crashes, that plane crashes or car crashes, there's a huge accident, there's a huge, natural disaster, and there's one lone survivor or just a couple survivors, and those people can carry around a tremendous amount of guilt the rest of their lives, because there's the worthiness there is the Did I do something that made the other person not survive this? And did I take the opportunity away from them? And if I did, how do I make it up? In a way? So yeah, it is a lot of pressure, but a lot of it is self inflicted.
Tara Conley:You know, when we first when I first heard about disenfranchised grief, I didn't really know what that was. And then when I looked it up, I was like, oh, yeah, I definitely have that as a kid. Because I remember when my brother was born and being so excited to have a sibling, you know, I was it was just my brother and I and I couldn't wait until he was born. And I would have appear to play with I'd have, you know, this built in friend. And I think it was never really explained to me that he had a disability. I just know that there was a lot of medical appointments and things like that. I think I was eight when I finally realize I'm four years older than my brother. I'm never gonna have the same relationship with him that my friends have with their brother or sister, I'm never going to be able to play with him. We may never even go to the same school, we're not going to have the same life. And I remember feeling really bad about it. And I almost remember the day that it like light bulb went on. It's not going to be what I thought it was going to be. That's my experience with disfranchised grief. survivor's guilt. You know, siblings, we have so much guilt about so many things, but I definitely had that. I had friends and family didn't have friends, I could go places that he couldn't go, I got to drive a car, I got to go to my home school, he went to like 13 different schools his whole life, I just went to the three that I was supposed to go to, I got married, I went to college, you know, all the things that I got to do, I felt bad that my brother couldn't do
Zach Rossetti:my experiences, I think are similar. One thing I would add is that my brother was born without a disability, and I'm seven years older than him. And I remember, you know, the day it happened, he had a seizure, and I won't get into a pediatric seizure, basically, when he's taking a nap and loss of oxygen. And during, when he was almost one, and our mom yelled for me to call 911. And so, you know, this whole thing happened. He was in the hospital for a while my grandparents were around. And, you know, we were still pretty young, but this like, huge, scary event occurred. And I think thought all of the things that Tara was describing as well and felt them. But the fact that this big event happened, I think was helpful in some way, because there was a sense of, like, like, let's make the most of it or lads, okay, this happened, you know, as we grew up, you know, Todd laughed, and, you know, didn't start talking and, but we were all together and kind of he was taught as he was, and obviously had these very obvious differences, but it kind of felt a little different. And so a lot of the, a lot of what we did, was just motivated by including him as much as possible and trying to, I guess, embrace, not embrace the disenfranchised grief, but maybe embracing the, you know, like, I embrace the caregiving role I missed out it was a different relationship. Like we we, you know, I miss things with my own friends a lot. But I tried to embrace the role and the time with him.
Nora Handler:I don't think that I had those experiences. And I think sometimes it's different in different families, obviously. And because I had so many siblings. I didn't think about, I mean, sometimes I thought I have too many. So I didn't feel even after learning more about what they mean, I don't really feel it speaks to me.
Chris Berstler:I think that's fair. Thank you, for disenfranchised grief and survivor's guilt. There are not any formal ways or at least that I'm aware of, of processing the grieving, what resources or advice might you have for any sibling currently experiencing recognizing their own struggle with disenfranchised grief or survivor's guilt,
Tara Conley:just realizing that I have experienced those things, I think I just naturally not are not even realizing that I was experienced. And I knew I felt sad. I knew I felt guilty. It was more of a sad feeling that I had. That's when I wanted to reach out to other siblings, I wanted to get to know other people. And I think that that was the way that I was able to process it. Even though maybe I wasn't, I didn't know I was processing it. But that's how I was able to kind of get through those feelings that I felt during childhood, even a young adult and even as an adult, like those things are still there. It was just meeting all their brothers and sisters in sharing our experiences. And I think there's something said, knowings, someone who's in the same boat, as you always helps us to feel a little bit better.
Shruti Tekwani:Definitely, terribly, you said for sure. Sharing is really, really caring in this way. Sharing your pain, sharing your experiences, sharing what you're feeling, and then realizing you're not alone. You're not only helping yourself, but you're helping others as well. And, Krista, what you just said about how Yeah, when somebody passes away their rituals, right, that we go through that offer some sort of closure with disenfranchised grief. There isn't. A lot of times there isn't an event where you wake up and you're like, Okay, this is over, or this relationship has ended or this relationship is different than what I thought it would be. And then there's nothing to do there's, I mean, to the outside world, nothing has changed. It's just internally changed for you. So that makes it harder, but I I always say, well, there's this famous quote anyway, that says grief is just loved with nowhere to go. And then disenfranchised grief, I think that's even more relevant. Because there's so much love, there's so much feeling. But you don't always have a place for it, especially when it's disenfranchised. And so something I recommend to people and something I do often is, I'll write my sister emails all the time, she's never going to get them, she doesn't know what an email, she doesn't have the capacity to understand. But I'll write her emails all the time, just expressing how I feel. But I want to say to her, what I would want to say to her, if she was in front of me, and I was able to talk to her, it really gives the feeling of place to go. And that's so helpful. And of course, as a mental health advocate, therapy and coaching, I think are invaluable. They just, I cannot put a price on it. It's just amazing. The amount of unpacking that you can do with the amount of just self reflection and the release that comes from it is amazing.
Zach Rossetti:Yeah, just quickly, I mean, I think a few times people have mentioned guilt, and probably everyone listening, you know, knows that experiences guilt, but, you know, the kind of sadness or you know, that comes with the disenfranchised grief can then result in some guilt because you feel bad as a sibling for feeling sad about the, you know, what's what's happened. And so I think one of the things that I learned from talking to other siblings or you know, and part of that connection is like, other people feel that it's not just me, you know, this horrible person who feel sad about the fact that my brother can't go skating with me. And so like, trying to, like it's okay, to let go of that guilt is one thing, and then balancing that, I think with, well, my brother can't skate on his own. But if we put him in a sled and pull him like that process of figuring it out, and kind of seeing what what we could do was was really helpful for us. It's been I didn't know what at the time, and I've just kind of realized that these last few years, but I think our my process was, over the years one of kind of reframing his challenges and maybe the disenfranchised grief and trying to, to a more strength based approach, or what's like unique or fun or cool about the relationship or how we interact and how we do things. And that was a gradual process, I should add, but I think letting go of that guilt, talking to other siblings certainly helped. Alright, so
Chris Berstler:let's talk about grief and loss associated with death. Now, what happens when a member of the family dies? How can you help your siblings with the disability process and mourn the loss of a loved one? And how do we find time to grieve and mourn ourselves while still helping our sibling?
Nora Handler:I don't really think I had to do a lot of that. I don't when my my dad passed, I was 17. I'm a little older than that now. And my brothers were young. I only remember my older brother, Marty. And it was really difficult thing for him, because he had a warmer, better relationship with my father than he did with my mother. But I didn't know how to help him. I didn't know how to help myself at 17. You know, so I don't really think I helped them very much with that one. When my mom passed, you know, they were all older. I think my brothers were ready. So self ready, because my mother was very unhappy and burned out. We all knew she had some scary health things wrong. So nobody was surprised when she passed, even including the brothers. And my mom was such a tough taskmaster, you know, we used to call her the general. And my brothers were, we're kind of ready to fly the coop. And I think it actually was ultimately it sounds bad, but I think they were okay. And we never, I mean, what we felt when my mom passed was that we didn't have time to grieve her, because we had to take care of them. But we didn't have to take care of them that way. We had to figure out where are they going to live? How are we going to care for them, but they just they just seemed okay. And they really tend to them, especially the Brother I have left. He is so matter of fact about death. Sometimes you're like,
Shruti Tekwani:you feel anything, you know?
Nora Handler:So I've never felt. I've never I mean, I was the one that called him when, when our sister died, and he was like, Oh, you must be really upset. I'm like, Yeah, aren't you? You know? Yes, I am. But you know, it sure didn't sound like it. So it just seems so matter of fact, for him, I guess I'm lucky that I didn't have to do that kind of care to
Tara Conley:do want to mention, while I haven't really had to deal with that, there are some resources on the sibling Leadership Network website, and how to talk to an individual with disabilities about losing someone. And it's good information for anyone who would would need it.
Shruti Tekwani:So I haven't been through it personally, where I've had to put aside my own feelings to care for my sibling. But professionally, I can say that, and I think I did a webinar on it. That's also on the Aslan homepage. But I think professionally, looking at it from the behavior point of view, we all behave, we all do things to get our, our psychological needs met, to feel complete. And we all are driven by different things, right, we're not the same person. And so when we are putting aside our own needs to take care of others, even that can be made satisfying, because that's who we know ourselves to be. And so it's kind of counterintuitive sometimes. But by shoving aside our own feelings, and caring for others, we are indeed, satisfying our needs, because that's who we are. Now, I'm not saying we should always do that, because we definitely need to take care of ourselves. There is something to be said about making choices that look good to us. Sometimes it's a necessity. Sometimes, you know, if, if I don't take care of my sister, and I don't give her shower, change her diaper, she's going to get sick, she's going to get an infection and dictate time of it is not chosen by me. But I it is making a choice realizing that I am making a choice by taking care of her. It's because I love her that is also neat, satisfying, that's my connection means that I'm satisfying, can feel a little bit better, it feels like you're a little bit more in control than
Chris Berstler:what happens when your sibling with a disability passes away. How is the grieving process different for siblings of individuals with disabilities? And if you have experience, how is this different for you?
Tara Conley:Oh, it's interesting, interesting, because I can't really explain why it's different for me, which is different. I've connected with many siblings, since my brother has passed away on a Facebook group called loss of a special needs sibling. And a lot of them were there siblings caregiver and I wasn't my brother's caregiver. And so it was different for them, because maybe they had, you know, their relationship was different, you know, they were taking care of them. And sometimes it was a codependent relationship, not in a bad way. But they kind of took care of each other. So losing that person just felt different than if you were to lose a sibling that maybe you didn't live with or weren't in charge of, or taking care of. When my brother passed away. I felt immediately lost, not just the loss of him, but lost. I now felt alone, like I was, I was losing me, I lost my identity, my whole world. Everything I did in life was really truly about my brother. And I had to sit back and think who am I now? What am I what am I? What am I doing? I didn't have to advocate for him anymore. You know, which is pretty much all I ever did. But then I started talking to just my sibling friends in general. You know, when we started saying, we started hearing once a sibling always a sibling. If you still had those experiences, those those experiences don't ever go away. Just that whole identity loss of identity of my brother was huge. And I didn't know honestly I didn't know if I could continue doing my sibling work because of that. But again, it was Talking to the siblings and then finding and my other group, my group of siblings that had lost someone that No, I, I still need to do this, I still have my passion and my desire to help others. Now it's just in a different way, as well. And, you know, I use my brother as the power to do that, even though he's not here,
Nora Handler:I do think, again, it's a different thing. You know, when you still have siblings left, I, you know, all the siblings that I know, that only had the one sibling, it's, I think it's, it's the worst, you know, I still have my other siblings, and I'm very tight with, with one in particular, I still have a brother to advocate for. So I haven't lost the advocacy piece. I actually never even questioned what I keep doing this, I knew I would keep doing this. And if I lose my brother, Marty, I'll still keep doing it. And for me, it's part of the way that I deal with it. And it's a way to honor them. You know, I never thought that their world was right. I never thought that they were that they were that they had enough rights that they had enough supports. And so if I keep fighting for that, that that helps me. And so that's kind of how I, you know how I think about it. And you know, having experienced both kinds of loss, it's it is very different. I miss completely different things from my typical sister that I miss from my brothers,
Zach Rossetti:I had a similar reaction, Nora, in terms of, I think the identity or the work that we do, I, I some of the motivation turns intensified. And there's some anger there, because I started thinking these last few years, Todd was 39, his life was great with us, but it was predominantly with us. So many more people should have had the privilege of knowing him in school as an adult in the community. And there are so many problems, so many people doing wonderful work, but so many problems and barriers and various service systems. And so I knew that I would continue to do the work, I worried about whether I would be able to. And I do tear up random times when I'm teaching or presenting or advocating or talking to others. And that's nice, you know, that happens. That's I think that's always, always going to happen. And the other thing that happened, I don't really have a comparison to other siblings without disabilities. But the thing that happened was that the rest of us siblings without disabilities in our family, got closer. I mean, we all no one was in fights, or we'd like we all like each other, we all were in touch. But this brought us closer for the immediate obvious reasons of seeing each other in the hospital or then dealing with the funeral stuff and all of that, but But since then, two and that's been really nice. I mean, I obviously wouldn't trade it, we miss type terribly. wish she could still be here, but that's been a nice outcome or silver lining. What advice or words of comfort might you have for any sibling listening? Who is mourning a recent loss of their sibling?
Nora Handler:I would say be with other people like you. It's just like the same thing that you know, may made meeting other siblings. So special, haven't done therapy except for kind of hair. Because I get to, I get to talk with with Shruti. And, and, you know, so I haven't, I haven't officially formally done it. But I feel like we all kind of do therapy with each other, you know. So but I do encourage people to to to look to therapy, in addition to our group meetings and things that we do because we aren't professionals.
Tara Conley:I just echo what Nora has to say. Absolutely.
Zach Rossetti:I attended the SLN conference in June of 2019. Less than a couple months after Todd died and it was such a blur. It was still so raw. I don't even know. Remember what I said if anything to people, but I remember attending the table talk at the conference on grief that Nora and Shruti LED or at least both were there and talked a lot And I mean, I don't know if I've, if they know this, if I've said this to you, but I, I don't even know because of COVID if we've been together in person Shruti we have, but I feel so connected to both of you just because of the leadership that empathy. And and especially humor at that, like 10 or 15 minute Table Talk, it was so helpful. And I carry that I haven't had therapy or attended any other formal sessions. But I think about that. Honestly, it was like 15 minutes if that and I just carry that with me three years later. So I think whether it's formal or informal with with other sibs, I guess I'm echoing what everyone said, I real quick, there are a couple of practical things. I mean, if this has recently happened, and your sibling had any equipment, or things like that, it was really helpful. I, you know, in sibling helper mode, I with my stepfather, like, we donated all of Todd's equipment, to the local service providers so that it could be a benefit. And that helped. But also, it was just so stinking sad to see like the empty wheelchair, I like that's burned into my memory and makes me like, I can't think about it. So there were things like that, that that people may not be aware of. And lots of people reached out family and friends. And I remember, it was very supportive to a point. And I remember I had this stack of cards, after Todd's funeral or after it happened, and I couldn't look at them and didn't look at them until a year later. Because then I felt guilty that I never thanked people for their grief cards. So then that forced me just about, I made myself do it before a year passed. And that forced me to look at them. And that was really helpful at that time. Because I I got busy with work and never dealt with anything. And it was just cathartic in a way to look at all the cards and write emails to or cards back to everybody.
Shruti Tekwani:I just want to I just want to add in what I say to people grieving, don't let anyone tell you how to feel. A lot of people will say Be strong, or stay strong, or you've got to be whatever, whatever fill in the blank. Don't let that happen. Because no one no one gets to tell you how to feel. Zach, you touched on this, but there's no timeline for grief, there's just you don't circle a date on the calendar and say, Okay, this is when I stopped grieving or when I have to stop being sad. There's just no timeline for it. And I would say, feel what you need to feel. I mean, there are so many layers of emotion when it has to do with a sibling, or their protectors where their parents right sister mom's? We're all sorts of things to them. So not a lot of people are going to get it. So find your tribe find your people. And do it feels good.
Chris Berstler:It's often said that time heals all wounds. As an as a sibling who is experienced last, have you found this to be true? And how does the grieving process change over time? And what advice might you have for siblings who have lost sibling maybe years in the past, but are still processing?
Nora Handler:I don't like that time heals all wounds line that much but and I would change it to time lessons, the pain. But But it can't heal that wound. For me, that's the way I feel about it. I, you know, I think I can be like Zach and surprise myself where I can just I can talk about this and not cry. And then you certainly saw I can cry, you know, and five years later, I still miss my parents, you know, but I will say that, you know, I can talk about it more I can laugh about the funny things about my brothers. And they were hilarious. And they got into so much high jinks and the stories about them people love that part is better, but I know, you know, there, there's always gonna be that hole for me.
Tara Conley:You know, obviously time does not heal all wounds. But a lot of people on a Facebook group, it's just different. As time goes on, it changes it's different. And every kind of milestone a birthday or holiday, you know, you might have a good year and you won't feel that sense of loss. But five years later, it had to in a different way. And again what Trudy said You know, there is no magical date, and you feel what you feel and And, and everyone has a right to, to go through the grieving process, how they need to go through the grieving process,
Zach Rossetti:I have a sense of wanting to, I don't know, spread the lessons, the kind of privilege I had of growing up with Todd. And I talk about, as I said, all the time in my classes when I teach and presentations and, and you know, one thing I think over time, you know, that that shifts a little bit to AI, or allows different opportunities. And one thing that we've recently done that AI has been really helpful in different ways is that in the Massachusetts, sibling support network, we created a memorial fund in Todd's name that gives small amounts of money to siblings with and without disabilities to do social or recreational things in the community, which is something we always I cherish about my time with Todd, or growing up with Todd,
Chris Berstler:what is some advice that you may have for getting through the holidays, or special days after a sibling is passed?
Nora Handler:Or my family? We kind of changed up the tradition some. And you know, I mean, we've gone through that a lot because of losing parents, you know, so the holidays had to change, and they keep changing. And but then that kind of has helped us because we're not doing everything exactly the way we did. And so somehow that whole isn't quite as obvious. Finding now we kind of sometimes, you know, we all make a toast to them. And sometimes we'll share like the craziest story, what's your craziest story that Pat Mike did?
Zach Rossetti:Yeah, we similar to Nora, we kept our, our same traditions and went to the same houses and you know, did that, but we definitely saved time for sharing stories, for toasts, and we've, you know, those who wanted to, at all our holidays will go to the cemetery to the to tie the grave and do that. And that's been, all of us are a couple of us are, you know, it depended on the day at times. And then with COVID, you know, some of them have been virtual, but we've done you know, Zoom calls, and we've all had our little, you know, our little shot or drink of whatever and toasted by zoom. And it's been really nice that way, this has allowed us to all talk and share stories, and some of my other siblings have shared stories that I never knew about that are larious
Tara Conley:you know, when it comes to my brother, honestly, it's just really me and my mom left, most of our family has kind of disappeared, hadn't really been involved in my brother's life. So you know, one of the things that she likes to do and, and I do as well is just visiting the grave, especially on on his birthday, and I'll share something that people probably shouldn't do, which is what I'm really good at doing and is not a good thing is just burying my emotions. I can talk about this stuff. But when it comes to the point that it's really painful, I just, you know, push it in the back of my head. One thing I I do enjoy doing is my my two girls, I have a nine year old and almost seven year old and they were very, I'm very lucky that they got to meet him and that they get to experience him as a person. And they got really close. They actually love talking about him and I and I love talking to them about him sometimes maybe not my mom so much because it's like I feel more anxiety and guilt about it. But with my girls, I love that they bring him up they'll say I miss uncle neck and they'll they'll talk about oh, remember the time that we blew bubbles for him and and he was laughing or he loved women's hair. And they'll bring up how they used to shake their head for him and he would just laugh and laugh and laugh. And so I mean, those aren't holiday specific, but I think just remembering the good times. I think sharing memories, good memories about siblings is the most important thing.
Chris Berstler:How might siblings in bipoc communities be impacted differently in grief in the grieving process? And are there any bipoc specific Good Grief and Loss resources that you can share.
Shruti Tekwani:So no specific resources. I'm working on it. But how might they be more impacted? I think that isolation piece, the loneliness piece right there, here's another layer of loneliness, another layer of being different another layer of not fitting in necessarily have been misunderstood or not being understood. There's the, the piece of being said a word that nobody understands, and then being a part of a community or an ethnicity, or just an identity that people either don't get, or they're questioning, or sometimes unfortunately, they're attacking. So mental mental health wise, I think, more than ever, I think they are sets that need support more than ever. They're what we would call high risk. And, yeah, just that isolation piece, that loneliness piece would be magnified.
Chris Berstler:What advice would you give any family members or friends or co workers who know a sibling who is experiencing grief and loss? How can they help?
Nora Handler:I think we can just share our resources.
Tara Conley:Yeah, actually, we started on supporting Illinois brothers and sisters a whole grief section. And it is not limited to siblings in Illinois, our our information, our group, our siblings, all over the world, really
Zach Rossetti:a big adding on to that I heard family, friends, you know, or others who know a sibling who's experiencing this, I think, I would say just that it's okay to reach out. And please do reach out. Email card, you know, attend the service be in person. It was really nice to hear from so many people and at Todd's services and kind of party or whatever, after, you know, reaching out just a quick note, it might be hard, you might not know what to say. But just a quick note, thinking of you, this must be tough, or you know, I remember this about your sibling, or you know, and without any expectation, because we might not get back to you. As we're dealing with things in a timely fashion.
Tara Conley:Unexpected people came to his funeral. And this, everyone had a story to share about my brother and his his respite workers were there. And they wrote their eulogy, you know, they have things to say that, again, things that I didn't know, and I knew how close they all were. But of course, that made me cry more, but it was so amazing, you know, and it's, we still have those letters, and it's nice to look back on those letters.
Nora Handler:I totally agree with you, Zach, about the, the cards and the letters. And so now I always make sure when somebody else has a loss, to write personal things, you know, and not just sign it. You know, it's just sign up pretty card, I always put something in there, even if I don't know them that well, because of how much it meant to me. I mean, particularly Patrick's his memorial, we waited a while. And we were blown away by what happened. And we didn't have a big enough space. And we thought it was a big space. And there were so many people that we didn't know, and particularly for that brother, in his last five years of life, he did live a big life in the community, we let him take a lot of risk. And, and that gave a lot of stories that were really funny. And sometimes not so funny. But you know, but I was so impacted by how many people were impacted by him, that, you know, people that I would never have known the community of people where you got to support the grocery store where he worked the beach, that he loved that, you know, he developed a whole group of friends of their, that they they didn't know anything about people with disabilities, they just, I was just blown away and I've kept a lot of the things still that I go back and look at. I encourage people to to have some sort of an event like that even during the pandemic because of how healing it it was both for all of us. My siblings,
Chris Berstler:how has the pandemic impacted siblings in any of these grieving processes,
Nora Handler:it is so hard to hear the stories from other our sibling friends, you know, particularly one friend who could not be with her sister in the hospital, who was also nonverbal. I mean, they fought and fought. And they never, they never got to be with her and she died alone. And for that specific friend, it's it's just magnified that terrible loss,
Tara Conley:what we are finding just through our groups and our networks, so many siblings, so many siblings have lost their brother or sister during the pandemic, which is why we really started reaching out and some, like SIP net and some other avenues just to, you know, let them know that we're here, when they're ready. The fact that, like Nora said, so many of them, were not able to spend those last hours, a lot of them were their caregiver. It's not like it was just a sibling, which that is just as bad, but they wouldn't let them in. How difficult can that be, to process this grief when you don't get to spend that time with the individual and she was absolutely horrible. And I feel for all of those brothers and sisters that had to go through that I wish I have more advice for them, they may need more therapy, you know, they might need to seek out that to help through that that grieving process.
Nora Handler:Well, one thing that that we can tell people now is they absolutely have the right, they have the right to have one person anyway, maybe we couldn't have all of them.
Chris Berstler:jump in there and just say that a lot of those resources and information are also available on our in our COVID Resources Center, on the SLN page. Finally, can you share one of your favorite memories with sibling or with someone important that you've lost?
Nora Handler:My brother Michael cared about everybody. But he thought things in sort of a different way. And one of the things I loved about I love all about my brothers is none of them have filters. And what I say is they say the things that we think sometimes, but none of us would say. And so there were always hilarious things that were said or done. And my brother Michael, in a caring way wanted to always fix everybody. And so he was on the bus with me one day. And he saw a very big woman. And at that time, I was working for weightwatchers so he leaned over to her and he said, Lady, my sister works for weightwatchers she could help you she didn't think it was funny. I was laughing so hard I was crying which didn't make it better. But and he did that stuff all the time. And you know we would literally see it see that we would see the thought is coming and we were worse and worse we would be like let him do it. Let's just see what
Tara Conley:you know one of the things that I like telling people about my brother is he was absolutely the happiest person you could ever meet in the entire world It didn't matter what was going on he could be sick he could have been in pain and he was still willing to give you a hug and give you a high five and just happy and I I didn't admire that so much when I was younger because I'm that's not my person whatsoever but I admire it so much right it as an adult I wish that I can be that way and just kind of move on you know with my day and be that happy and loving and I'm just not really appreciate appreciate the happiness My brother gave to other people,
Zach Rossetti:my brother. I think like a lot of people with CP like had kind of a startle reflex and liked kind of sensory input around him and growing up. We used to like do little tricks we'd kind of sneak behind him and scare him and make him jump and he would laugh. Or when he got older I would like pull the hair on his legs and he would jump in and start laughing and my now nine year old daughter at first when she was younger she didn't know how interact with him and I taught her that trick. And she he she did it and he laughed and then like she would always do it or give him a high five after that which was cool. The other thing related to that the sensory like he loved music and I remember so many times driving are accessible van and blasting the radio and one of our favorite songs was Bohemian Rhapsody by Queen because it has that very quirky build up and, and I would blast it and think the different voices and he would be laughing in the rearview mirror. And he was he was in hospice, I think for a couple of days. And so I got there and and my mom and stepfather went home for the first time and I stayed with him and we were watching the Red Sox spring training or the season it just started and, and and I he was in the bed, and I played Bohemian Rhapsody on the on my phone and as loud as I could, and we just kind of saying that and he was laughing. And it was this moment that felt such like, you know, five or six years earlier before he started getting sick. And I just totally forgot where we were. And I texted my mom and asked her you know where his he got a G Tube the last few years where the food was to feed him and she called me back and she in tears and said like Do you not remember where you are and where he is kind of thing. And that memory like will always stick with me because it was a rough number of years. And now they literally felt like it did when we were you know, like teen you know, so much younger or it was awesome. Like oh, like I don't even love, like that song or type of music necessarily. But I love it because he loved it so much.
Chris Berstler:Those are all beautiful memories. Thank you very much for sharing. Really awesome. This has been a longest one. I really appreciate your time. Thank you so much for being here and sharing with all the other sibs. I'm sure there are going to be many sips, who get a lot out of this. So I really appreciate you being here and sharing. Thank you.
Zach Rossetti:Thank you. Thanks, Chris. I
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