SilverSibs

This month we discuss challenges and blessings unique to sibs in the Baby Boomer and Gen X generations and hear some amazing advice and words of wisdom.  Our guests are Lynne Calloway and Barbara Corley of SilverSibs.

Access the transcript of this episode here.

Resources and terms mentioned in this episode:

• Sibling Leadership Network
• Silver Sibs
• Ohio SIBS
• Hamilton county DD services
• Charting the Lifecourse
• Pickway County Board of Developmental Disabilities
• Ohio SIBS Sib Talks
• Siblings with a Mission
• Sibling Support Project
• Sibteen
• Sibnet
• Sib20
• SLN COVID-19 Resource Center
• Where The Journey Leads; A Conversation with Silver Sibs (VIDEO)
• TERMS:
  • DSP (Direct Support Professional)
  • Dagwood sandwich
  • FMLA
    • Loco Parentis

Transcript

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Chris Berstler: 0:02

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 issue is important to us and our entire families. Hello, and thank you for joining us for another episode of the SLN podcast. This month, we're joined by Lynn Callaway and Barbara Corley to talk about silver sips. Hello, thank you for joining us today.

Barbara Corley: 0:34

Hi, Chris. Good morning. How are you?

Lynne Calloway: 0:36

Happy to be here.

Chris Berstler: 0:38

We're happy to have you both here. Thank you very much for joining us. So I'd like to just kick things off and ask you to briefly tell us about yourselves and your siblings or anything else you want to share with us.

Lynne Calloway: 0:49

My name is Lynne Calloway. As Chris said, I'm a wife, a mom of two adult children who are doing their thing in the world right now. But I'm also sibling. I'm a third born of four girls who are generously spaced in age, to say the least. I was I was blessed with loving parents and learned like advocacy at the feet of a mother who was a beast of an advocate for all of us. But I was the youngest of 10 at the time when Leo was born Leah's my sister, she's 55. She's in an artist. She's been employed for a good portion of her life. But after our parents passed away, she she stopped working. And is now discovering her. Her life as an artist. She's a music lover. She's a goofball. She is sometimes my my nemesis on the worst day and my bestie every day, I was employed for 40 years professionally in the DD field, and spent 31 of those years with Hamilton County DD services. And Ohio. I spent the last 16 of those years gleefully working directly with families as an advocate, an information resource and and a planning support. And that consider that a gift. Right now, in retirement. I just have three jobs. And I'm working as a as an ambassador for an Ohio ambassador for turning the life force. My most recent venture, which I love, and just actually asked to work do work with a group that's doing some research in the area of aging families, as a matter of fact. And the other thing I'm doing is working with a another organization, the Ohio sibs, you might be familiar with that was asked to rejoin their board and was happy to do so.

Barbara Corley: 3:17

Hi, my name is Barb Corley. I am the oldest of two. My younger sister is just a little bit shy of four years younger than me. She was born healthy, and contracted bacterial meningitis at the age of five months of age. That was around the time I was four. So that's kind of that left her spastic quadriplegic, nonverbal nonambulatory visually impaired. So she's basically the polar opposite to Lynn's sister, Leah in that she requires 24 hour care and supervision. Still, quite the independent woman who knows her what she wants and what she likes. She is I just turned 50 In February, and she is coming up on 47 next month. So beyond that, since 1990, I've been a direct support professional. My sister was actually one of the first if not the first person in Pickaway county here in Ohio to be on the I O waiver. And so when that rolled out, they allow they didn't allow parents at the time, but they did allow siblings to be professional or to be providers. So since 1990, when I went into college, I became a DSP. And I've been doing that ever since and over the years working full time as well as doing that on the side with the goal of staying in the loop. And, you know, collecting information as I went along because I'm the only sibling. So when my parents are gone, that's the role that I'll step into to be you know, I'm already her co Guardian but stepping into that role a little more fully in In 2020, I left my corporate job and started my own consult caregiver consulting business. And I have teamed up with Pickaway county development of Pickaway County Board of Developmental Disabilities. And I am now their DSP liaison for Pickaway. County. So I'm sort of mentoring new providers as well as offering support and connection with existing providers. So that's been lovely. So much like when I've, I've been touched by the DD population my entire life for a very large portion of it.

Chris Berstler: 5:34

So, in your own words, what is a silver sib?

Lynne Calloway: 5:39

Well, there's silver sib. In Ohio, a silver sib is a baby boomer, who's grown up with a brother or sister who has a developmental disability. We're an inclusive group. So some of the primary caregivers, or sorry, some of us are primary caregivers, in in the the wake of the loss of our parents, some of us are still writing the next chapter like BB, and and still partnering with their aging parents to plan for the future. I'm a seasoned professional and an advocate. But I hosted information sessions all the time in my career. And notice that there were rarely siblings in the room. Lots of parents, not a lot of siblings, our parents really thoughtfully prepare and plant for life without them. And as Leah aged, I really found myself as her primary support, just really desperate for a group living my life, people dealing with the things I was dealing with, and I encountered some of them throughout my career, encountered them in my daily life. But we weren't a formal network, we just were friends who kept each other up and and provided each other information and support. I was given an opportunity back in Gosh, 2018 at an Ohio sibs conference, to really share my heart about this, I was just so frustrated. And I found that the audience that I spoke to really hurt me and a lot of people felt the same way. And that's when I had the opportunity to kind of meet in a room at the hotel with Barb and other and other sibs who are going through similar situations. By 2019, we met formally at the next Ohio sibs conference. And, you know, that was pre pandemic. So we did have a year to connect. And as the pandemic hit, we sort of found ourselves, guess what? Taking care of our siblings. So we've lost we've lost a little time. But the work is still happening in the background. And I'll share some things later about what's going on with silver sips today. The thing that I want to just make sure that I include in this conversation is that we're aging sibs. A lot of us have lost our brothers and sisters. And I just want to say explicitly, you're still the silver sieve. Your life experience isn't erased by your loss. The community is still there for people who have lost their brother or sister with a disability.

Barbara Corley: 8:37

I would say I would support everything Lynne said 100%. While I think the formal term of silver SIB focuses the most on baby boomer, I have the silver showing up to in my hair to prove that I am the next wave of that generation. Or the next wave of that movement. It is it's all about I mean, it's it's scary as we age anyway. But it is also incredibly intimidating to take on such a role. When you feel like an island, which I have. It's not been that long ago that I didn't know any other siblings. That's how I got connected to Ohio sibs. I was looking for connection. And I was hoping to find someone who had my same experience. But what I quickly learned was regardless of what the story looks like, regardless of whether or not you know the details of your your siblings abilities, we all share the same apprehensions we all share the same. The same fears, the same anxieties about things moving forward the family dynamic, having difficult conversations, I'm a very proactive person rather than reactive. And if there's anything I can, you know if I can stack the deck in my favor, now, to save me some hassle later, and that even includes knowledge gathering That's what I want to do.

Chris Berstler: 10:01

How does being a sibling in the Baby Boomer generation set you apart from later generations of siblings?

Lynne Calloway: 10:08

The research from the center from disease, the Centers for Disease Control, says that baby boomers are now the longest living generation to date. So we're living longer. And we are, we are aging. And our brothers and sisters and our parents are living longer. And, and we're all aging together, I just want to say that I'm really grateful that we have medical care that can that can provide that that, you know, provide that for us. On the other hand, we're 40% of all US caregivers, at this point, roughly 62% of the caregivers who are boomers are female. And we're exhausted. In a lot of cases, we don't talk about it, we push forward. And the result of that is that 30% of us usually have some sort of a chronic health disorder of some sort. The there's a, as everybody probably knows, a shortage of of caregivers right now. And our support systems that are paid are somewhat low, and we're having to fill in more and more. So I feel personally more of a strain right now than I have before. And if you're familiar with the term sandwich generation, you know, that we care for our children and our parents. And now we're caring for our brothers and sisters as well. Ours is a double decker. I'm also the parent of, as I mentioned before, my son who's an adult, he has a physical disability. So I always described my sandwich as a Dagwood. If you remember that, from that cartoon, it has it had like for Dagwood made that sandwich as big as he could. And sometimes I could not get my my mouth around it. So there's that challenge for boomers too.

Barbara Corley: 12:18

Yeah, I would totally agree. I mean, if coming from the, from the Gen X standpoint, those are still all valid, nothing's changed. I think those are, you know, I personally, I do not have children. My husband is a disabled military veteran. So he's a level in my sandwich, as well as my parents and my sister. So I think one of the things that sets at least my, my generation apart, as well as Lin's really, is we've seen the inception of technology and the internet, and what you know, in our lifetime, and what that's done for connection, and what that's done for real resource, access for people, just information, I mean, it's not that long ago that you had a phonebook, you didn't have Google. We live through that. And we've seen that. So we've also lived through the early part where we didn't know any other siblings. And we've witnessed the birth of this, this boom in recognizing our demographic and in our, you know, in the DD community, and we have a voice now, and we have a presence, and our issues are seen and heard. So that's tremendous. Future generations are born kind of into that, and it's already existed. We've watched it from its inception. It's absolutely phenomenal to see and has been needed for so long, but I'm so glad it showed up when it did. And you know, and hats off to sibling Leadership Network for that, for being a driving force. That's huge.

Chris Berstler: 13:51

What are some struggles and or blessings that are unique to your generation of siblings.

Lynne Calloway: 13:57

I just I had three, three major blessings. One, of course, that were that were able to live longer, so that we're able to see all of those things that that mark just mentioned, come to fruition. I also appreciate that I'm a I'm here and able to support my sister. It's my pleasure to do so. But I have a lot of friends who you know, who didn't survive and have their siblings don't have the support that I feel blessed to provide for for Leah. We're working longer. We're like what we were actually one of the wealthiest generation we were the wealthiest generation and we were bumped off by the millennials in 2019. So we're fortunate to have the resources, in some cases to kind of help support the family. We continue to make progress legislatively. Barb mentioned that earlier. Thank goodness we have things going on at the grassroots level. And we have some legislative activity and representation at the at the state and national level. So our voices are being heard challenges, well, we're busy, we're busy, where we're living longer, but we're care for everybody. I find it challenging, because our lives are always fluid and changing and you have to adapt, not just, you know, season to season, I mean day to day, sometimes the week can be a challenge. Leah recently got really sick. And it was it was six months of life on hold. And, and nothing, nothing changes. When you come out of those places, those things that were waiting, waiting on the side of the road for you, somehow catch up to you. So, you know, I became sick, trying to be a caregiver for her during that tough time. I want to say that interfacing with systems is a challenge sometimes. Barb said they're, you know, they are catching up. But some systems don't know us. They don't know who we are. They don't they're not really sure how to even interface with us repeating my story, providing that durable power of attorney in 15 places in her life. And sometimes every year is proving who I am in her life, when I'm showing up all the time, is a little frustrating sometimes for me, I want to do the work of supporting her I want to be I want to spend my time and energy making sure that her day and her health and where she lives. And what she asked for is being is being supported and and in moved forward that her vision for her life is the thing that matters to me most. But I find myself stuck in a lot of administrative muck. That doesn't change the system isn't responding that way. At one point she was she was sick while I was employed, and I couldn't get family medical leave for her. Because FML doesn't have a inst doesn't have statute that includes your brothers and sisters. I can take care of my parents, I can take care of my uncle. I was able to have bereavement time for for an aunt, but my sister's caregiver and I couldn't get that time. That's changing where you know, if you're in parenthesis, Locus, you can you can prove that you're a person who's a regular caregiver for your brother or sister, you can probably get FML. But I would rather it be something that families can depend on. And not necessarily have it left up to, you know, the whim of the of the employer. Yeah, I do wish there was a uniform way of recognizing our relationship. I'm gonna say this about family support organizations. There are more and more out there. The spinal bifida organization that we belong to, for my son has a as always included brothers and sisters, and I thought the world of them for that my daughter was always part of that conversation. Leah doesn't have a diagnosis really. Her disability occurred as a result of a super brain injury at birth. And there's no group for the head. So there's no network that I can connect myself to that will support you know, support me that way. But I do I would like for sibs to be an explicit part of every family information gathering. I want us I want our names to be spoken. So that people kind of get used to hearing ah, brothers and sisters are part of family and sips serves when they're when parents pass away. I think it would be helpful if systems had a way of sort of helping transition us in some small way into our roles. I've seen siblings actually be the only support person for that brother or sister and the system's somehow wedges itself in between them, that one person who would be there for them and that and and their brother or sister. So more support as we enter into this role within a system because we don't necessarily all know those systems Barb and I do you know not everyone does.

Barbara Corley: 19:58

Yeah, I would. I would definitely echo. So many of the things Lynne just shared. Again, they're not they're not I don't feel they're necessarily generation specific. It's something we're all going to step into much like, much like Lea Lin, my sister doesn't really have a diagnosis of that. I mean, developmentally disabled is a broad category, she doesn't have a group that's specific to, you know, a healthy infant that contracts a disease and is left in her in her condition. So there is that that's a challenge, I guess I'm happy. And I feel it's a challenge and a blessing to even have any sort of a even a generalized Group of support. While they can't speak specifically, there are enough commonalities, I think that it, I just feel blessed to be able to connect to any kind of group or individuals who share even a fraction of that. And I think that's definitely something to, you know, for anyone out there listening, I would stress to people is don't look necessarily for someone who has the exact same situation as you, right, look for the commonalities. Because it's, it's a challenge to find that because it's there are all different nuances to this. So I would say definitely, to Lynn's point about one of the blessings is medical care, the movement to bring the DD community to the forefront advocacy. Basically, we the community doesn't hide in the shadows anymore. And they're much more in the forefront and they have a presence. And that alone is having a trickle down effect to the medical community. I mean, I'm we're actually approaching it next week with a medical professional to get over some basic health care for my sister. How can we tweak this to make this a better experience for everybody involved, and he's open to that. That's not always been the choice or the has not always been the an option in the past. So I think that's huge. And that's just a blessing. Again, Generation X and in the baby boomers are seeing this movement. It's trickling down to everything to your point, Lynne, about complication of systems, that's everywhere, I can tell you the complication of working with the VA system is just as complicated.

Lynne Calloway: 22:22

Absolutely. Right. It is on top of everything else, we have to know, we have to know every system, we got to know the medical system, we've got to know got to know the DV services system, we've got to know where how to how to function in the community and how to find those resources. We just basically wear a cape.

Barbara Corley: 22:43

Those are the little condiments on our sandwich.

Lynne Calloway: 22:45

There you go. I love that. I love it.

Chris Berstler: 22:50

Thank you both. And thank you for mentioning the club sandwich generation and describing that because it leads me into my next question, What experiences have you had with layers being added to your club sandwich? All have responsibilities as you age and how have you learned to manage it?

Lynne Calloway: 23:08

We had a couple of circumstances I wanted to share. One was that my son was having a surgery at our local children's hospital on the same day, that my mother was having a surgery across town at an at her hospital and my I remember my father driving back and forth across town because he didn't want to you want to be there for his grandson. He wanted to be there for for his for his wife. I mean, I hadn't really thought about just thinking generationally, you know, the impact on even my parents, we had another circumstance where both of my parents were on the surgery, they were on the board because in the hospital and buy on the board, I mean, the surgical board for the day, and both of them at the same time. We're having different surgeries, and in that moment, and we were where we should have been. But all along in the back of my mind, I was thinking about what's Lea going to need them now how is she going to cope with this? And what are we going to have to you know, how am I going to have to rearrange her her day or what kind of support it's there's this loop in the back of my mind all the time in the circumstances that that focus more on you know, kind of what her needs are going to be as a result of those situations I am in my life was for gosh 30 years caring for my children, you know, my husband working be ending increasing support for my mother as she as she aged that the sandwich sandwich was really stacking Lea really didn't cope well with my parents passing away so we had to really you know, make a lot of shifts in her life at that time, I just used you ask what I did to cope with it. And I'm gonna be really honest and say, I sought counseling when I, you know, just to kind of stay steady. But I'm not altogether sure that I was coping that we'll I was functioning, I was getting it done, I was organized I was where I should have been when I was supposed to be there people's appointments were met, things were turned in relatively on time to the organizations that required reports, there are some parts of that life, I don't remember details of to be perfectly candid. What I'll say is, and I'll probably share this a little later, I would not encourage people to live that way, if they can avoid it. It is a fast track to burnout, I would suggest that, you know, siblings while we are Cape wearing super men and women, we're human. And we also need to take care of ourselves.

Barbara Corley: 26:00

I completely agree. Lynne. Like I said earlier, my husband's a disabled veteran. And he was career, so almost 23 years in the military. And he's got paybacks for that. Now, as we jokingly say, you jump out of enough planes and gravity catches up to you. So he's, you know, he's had, you know, he suffered from concussions, traumatic brain injury, and we had to deal with all of those on top of, you know, I'm very blessed that my sister is healthy, that my parents and I are a great team. So I would say that what helps it all what's helped you juggle at all is to have some sort of support system around you. My husband had a knee replacement a couple years ago, and I had friends step up and say, What can I do to help you? And I think one piece of advice I give people is when someone steps up, to ask them to offer you help take it, it can look like anything, it can be, can I go pick up your groceries for you say yes, this is no time to be a hero, you know, let people help you and I had friends come sit with him because I had to go shift onto my DSP hat or my sister hat. And and deal with that, as well as I just wanted someone to have eyes on him, you know, especially in the early stages when he was first after surgery, recovering teamwork is so important. And it's not just you know, if you don't have a family dynamic for that, you know, what's the old adage, you don't have to be born into family, necessarily. I have friends who I consider family who are tremendous support, they don't have to live my experience, but they have empathy and compassion, and love me and want to help me. So I would definitely say saying yes to any help that you can get was, but it was been a huge resource. And like Lynn said, there's a constant mental loop going. So you can't underestimate the power of taking care of yourself. And I'm not saying you have to do a spa day, I'm saying just stop, sit down and be still. It doesn't have to be complicated. That's when I find my I am the most renewed and refreshed just when I am just still and quiet. My brain can hiss and pop and still spin, I just need to physically slow down in, I guess when you're in the midst of all that and juggling all that you have that mental loop going. It's basically you just focus on what's in front of you. Like Lynn said, You've got two two parents in the hospital or, you know, your mother and your son is in the hospital across town, you just focus on right now. And you just deal with it as it comes to you. And you do look back and you do kind of forget about it, because it's almost kind of I don't know if you can speak to this land, but it becomes very automatic. I've kind of trained my brain over the years to be able to compare a dog and move and yeah, it's I call it bobbing and weaving. And that too. I do. I do. I compartmentalize things. And I don't mean it disrespectfully, but different areas of my life are put into a bucket. And I have to look at them like that, like Okay, today, what does this bucket look like? And then the rest of the minutia from the world feels that around it. But I mean, I know that specific to our caregiving roles, but I honestly think it mean minus, maybe minus the caregiving role. Everybody does that automatically. That's life today. But you know, dodging, dodging all these different needs and wants and but you add caregiving on to it, and there's that heart component, and there's that, that that desire and that drive to take care of someone to the best of your ability and that adds that adds to it as well on top of everything else. So I would just encourage people my advice is, take care of yourself. And even in the small ways, it's it's don't underestimate the little small things.

Lynne Calloway: 29:57

By recently color coded my calendar I just it's a little thing. I swear by color coding my calendar for years, but it does. It's a visual reminder of how you are spending your time,

Chris Berstler: 30:14

What advice might you have for any other baby boomer or Gen X out there struggling to find the resources that they need.

Lynne Calloway: 30:22

I guess the first thing I would encourage is something Barb mentioned earlier. And that is, don't delay and planning for a good life. Like the minute the minute it occurs to you find a way to start building that that vision for a good life that you're going to be part of supporting 60% of siblings believe that they are going to become the caregiver for their brother or sister. That's a That's a big number. I don't have statistics to support this. But my my, my life experience with families points to this truth. Most people aren't automatically most families aren't automatically thinking about the end of life. They are not. We were still in my my later years with the County Board of DD getting calls from parents who were 90. And brothers and sisters were uninformed about what their responsibilities could be. So that 60% of siblings who are going to who believe they will become caregivers are always prepared for that role. I'm going to say listen to your sibling, listen to your part, your partner with your parents. I know that's not always possible for everyone to do easily. But, you know, find that partnership. And I know Barb will probably talk more about that. Give parents credit. That's something you know that I that I learned, it may even we cannot sit in judgment, become a parent, and that will become so obvious to you. There is no manual, we all do the very best we can our parents do the very best they can. We need to commend them for what they've done. It will do two things, it'll honor them in the way that they really should be honored. And it helps me gain some trust. So they do let us in. So they will give us you know, insight into what's happening in the control room of our brothers and sisters lives that they are running, being engaged and be intentional. We really have to be like conscious. As we're going through this it takes it takes some energy but it's worth it in the end 90% of siblings expect to live with their brother or sister with a disability have a plan? What is that going to look like? It may not end up being that if you sit down and think about how the pieces of that life we're going to fit together. Encourage your parents to do to do a state planning of some sort. Encourage them to leave a map that you can follow and encourage them to include you in those those meetings with the financial planner. Ask be okay to ask for help. And what are those relationships? Um, anybody there are DSPS and my sisters like I will I will buy you a cupcake just because I want you to know we value you connect with sibling information networks. That's advice that I would give. There are several now Bart said earlier we have we're blessed. We are really fortunate. We have a national organization that sibling Leadership Network silver sips is also now a part of we were already connected to the sibling Leadership Network. But now we're working with Ohio serves to make sure that those resources are available for for aging siblings as well. There is a group that's an international group of siblings with a mission started by a very young man in high school. This brilliant young man is now off to medical school, but it just an excellent resource for people who are all over the world and young talking to each other. And there's one more that I wanted to share. If you're not familiar with a sibling Support Project has several web and chat resources for siblings at various ages of life. I want to say that not every sibling relationship is the same and that's okay. That that we shouldn't compare ourselves to each other. Lean on your own experience. Lean on your own expertise, take it into the meeting room with you take it into the doctor's office. Take it with you to BVR and DOD D take it with you when you go to in to some spot in the community and and you need to advocate for your brother or sister, just take that with you and know that it's valued information, like your the Ph. D, for your family member, and then mentor young siblings, if you can, so that they can avoid those life landmines that we may have stepped on. And some of the younger siblings have told me, If you, like baby boomers could not complain about your old age ailments and that kind of thing, we probably listen a little more closely. So we're going to take that we're going to take that advice to heart, and in trying to keep our stuff a little more upbeat, and informative. But yeah, definitely put your arms around a younger suit. If you have the opportunity.

Barbara Corley: 35:48

In a general thought, piece of advice, I would say, don't stop looking. Keep with with the the light being shown on the sibling journey, we're on the DOD, D community, keep looking for resources that because new light is being shown on those new ones are developing all the time. My other piece of advice to you is I know there are a lot of Facebook groups out there. You don't have to, I recommend this is what I've done. I've signed up, and I just hover and I read and I follow. You don't have to necessarily put your story out there if you're not comfortable. But you can gain wisdom from others who have gone before you and who are going through it right now. I think it's important early on to decide, you know, what's your vision of a good life? What, what part or what role do you want to play in your siblings life moving forward? Lynne and I have chosen to be actively involved. That's not for everybody. And I understand that. You maybe you want to be actively involved, maybe you want to be on the periphery, and whatever, but decide what that looks like. And don't forget to include yourself in that vision. You know, it may not be perfect, what you thought life would look like. But also add yourself in there as well. What's going to be good for your family, your well being moving forward as well, because you're an integral part of this team. And if you choose to be actively involved, you're even on the periphery, you still have a role to play. And it's important to take care of yourself and arm you know, arm yourself with that knowledge that you need. Find your resources, find your people, what does that they say a sign of a good leader doesn't have to know how to do everything, but he surrounds himself with good people. You know, my brain can only hold so much. I want to know somebody or connect myself to someone who's got answers when I need them. So I encourage people to just if you find one little breadcrumb, I call it pull that thread, keep pulling that thread and see where it takes you and what other knowledge it expands into. It can be a little bit of a seek and find learning acronyms within systems and everything else. But like Lynn mentioned, there are so many resources out there. And they're more going to just develop every day. So I think it's important to pull on to that too. You don't have to be an active active participant, but dive in and take advantage of the knowledge base that's out there.

Chris Berstler: 38:26

What advice might you have for younger siblings out there listening,

Lynne Calloway: 38:30

I'm gonna see that I've worked with some younger sibs, it was very eye opening, you know, went into went into a conversation expecting lean in. And a lot of the younger siblings were handling things a little differently, they really weren't interested, first of all, in gathering in the way that we gather, they they're getting information in places that maybe a baby boomer might not be looking, I felt like it was our responsibility to ensure that we were getting that information in places that they could get it. So we're going to just continue to keep doing that. The other thing that the thing on the other side of the of the spectrum in our in our conversation was that they were not able to really see the future. And I would say that, you know, the future is hard to see sometimes when you're standing in your 20s or when you're standing in your 30s I most certainly envisioned myself as part of my sister's life when I was that age, but standing in it today, that was a black and white image. It is in full color now. And I could not have anticipated what all those colors were going to be in all of those facets of her life are going to be so even though you can't see what it's going to look like don't don't reject the advice of people who have walk through it, don't go uninformed, that would be my strongest advice. It doesn't matter if you can't see it, that's okay. But you know, don't go on informed heed the heat the heat the words of others, and, and put yourself in places where that information is being discussed. And then take what you need, you may not need it all, you may not even be able to hear it all in that moment, but take that information in, prepare as much as you can then and, and make friends with somebody, you know, who's who's walked ahead of you, who inspires you find your voice would be my my other piece of advice to younger siblings, you know, each of us is going to have a different life experience. Don't compare yourself to other people, I'm going to encourage you to ask for counseling, if you need it, you need a safe place. Sometimes it's not a conference room, sometimes it's somebody to just hear you. And and see if there's a CIP support team within your family members, disability group disability specific group, if one exists for you, and be an advocate, for others who are going through your walk, I'm gonna I'm just gonna close out with saying, you know, dealing with parents can be challenging. Not all parents share the enthusiasm that their children do for supporting their brothers and sisters. I've heard lots of parents in my in my career, say that they don't want to burden their children. And I had two pieces of advice for those parents that is, the burden would be that you're no longer here, and you've left your children, your children who are the caregivers uninformed. And the good life that you've built for your child with a disability, then goes untended to, you know, don't let's let's make sure that there's that continuity. So being getting you know, dealing with your parents, is going to require some some conscious thinking about how to become a partner in the work

Barbara Corley: 42:13

that to lead to Lynn's point. One of my pieces of advice would be to the best of your ability, keep open dialogue with your parents about the about the subjects. And I know that I mean, I was I'm blessed with parents that were very much a very strong team. And we're all advocates for my sister. But we we did the future planning journey. A few years ago, I think we finished it right before COVID hit. And that was a little challenge to get some momentum getting that moving. It requires patience on the side of the siblings to us, it's like, Okay, we have to go do this. This is necessary for the future. We see it very pragmatically. Parents are looking at it and dealing with, Okay, who wants to go talk about death all day? That's no fun. No, I don't even want to come, you know, there's, it hits at a very primal level that their child is very vulnerable, and that they may not be here, there, they won't be here to take care of them. That hits very deep. And some people don't want to deal with that. I've talked to a couple siblings and parents are like, Oh, it'll just work out. Okay, well, that's not necessarily blowing it off. There's more at the core of that. There's fear at the core of that that's pushing it away. I don't want to deal with it. They can't is it? It's an emotional response. And I think if you know that going in, it's tremendously easier to move forward with compassion and empathy, even for your own parents. They're not trying to be difficult. It's a nuanced and a complicated journey forward. So I think knowing that going in, is incredibly important. I think the my other big piece of advice is, aside from first decide what role you want to play moving forward, like I said, Are you going to be full on with it? Or are you going to be on the periphery. Either way, get involved early, and just collect pieces of information along the way, if you're, if you're in your 20s right now, you've got your whole life ahead of you. I get that. Collect little pieces along the way. Some of that you may not need, some of it may be invaluable. Just listen for little things, at this stages in our life. You know, you know, Lynn and I both are in a position where we've collected a lot of that a lot of that has been was what do they say baptism by fire. You collect you know, the more you can collect and know ahead of time and the more proactive you can be is so much better than being reactive. Because you when you don't have that knowledge. It makes things 10 times worse, even if you just know people's names of the county board where your your sibling gets services through. So if something horrible happens, you've got a resource and you've got a net Someone to catch you to help you through it. It doesn't have to be all the details and an encyclopedia of information, capture little nuggets that will hopefully help you. And then those again, you pull that thread, you call that person, that person tells you what to do next, you just have someone to hold your hand through the entire thing. And that's kind of what I've done my entire life, you just collect little pieces of information along the way. And over time, it puts together a more full and rich picture or map that will help you

Chris Berstler: 45:30

amazing advice. Thank you both very much. In your opinion, what has been the best thing about being a sibling,

Lynne Calloway: 45:38

I do feel like it's made me more empathic. I was at least 10 years younger than I am. So I tend to protect people and look out for folks eat, I've learned to do it, you know, to step back and not hover, as Lea causing. I'm not hovering as much now. But I am, but I tend to one, not just her, but everybody around, you know her friends to have a good life. I'm more thoughtful about other people what they're dealing with there. And I think that's true of most sibs. And that's what the research bears. It encouraged me into a career. It was a choice between journalism and special education. And and here I am 40 years in, and it's been fulfilling. The other thing is, my husband and I had a conversation the other day, he is a big supporter of my sister. And I want to give a shout out to two spouses. Because they are a very special breed, the ones who stick around and stay engaged, they should they should be knighted. They really should. We were talking about how how people might see my sister and I, we were we encountered someone who asked me as she was going into the nursing home for medical recovery. And the young man or the gentleman who was the executive director, asked me what her what level she is, she functioned at intellectually. And it sort of threw me off like what age he asked me, what age does she function at? And I couldn't even answer that question. Because that's not how I really think about people. I've met people who didn't have a diagnosis or a file. But I knew after getting to know them, there was you know, how to interface with them, what their strengths were, what their weaknesses were, and how to approach them what kind of things triggered them how to, you know, you figure those thing out those things out when you're when you're talking to people or interfacing with people. And I feel that same way about people with disabilities. And so I'm going to carry that message into the world, to stop thinking about people with disabilities as something or someone you need to diagnose, or put into a box or categorize. You know, if you are someone who to use his terms functions as a 10 year old, but you're 55, it's really hard to measure any kind of, you know, to calculate how that person operates in real life. Just let people be, take your time, get to know folks figure out what their interests are. And I think that's, I'll take that as a gift from my sister.

Barbara Corley: 48:49

I heard a phrase one day, and I think this, this kind of sums up in many ways. What's the best thing for me about being a sibling? And the phrase, the question was, Who are you at your core? And oh, I heard that it stopped me in my tracks. And I love those introspective kind of things. Because I'm always looking like who am I at this stage in my life? And when I heard that, I sat and I thought about it for maybe a minute or so. And I thought, I'm my sister Sister at my core. Absolutely. She's taught me to be so much more patient. This certainly creative and resourceful, you know, she can't get to the world. So we have to bring the world to her. And I've learned to use those skills, and every other area of my life. Yes. And I just know, I know what my core I wouldn't be who I am today if it weren't for her. We are so blessed. We're just so blessed. And I think she's she's definitely taught us more than I think any other human being possibly could.

Chris Berstler: 49:55

Thank you so much for sharing your wisdom and advice with us today. It has been An absolute pleasure to have you on our podcast. It's so for anyone listening any resources that were shared, you can find them in the description of the podcast below. Thank you so much for being a part of the sibling Leadership Network.

Barbara Corley: 50:13

Thank you, Chris. This has been lovely.

Lynne Calloway: 50:15

It has thanks for having us. What a pleasure.

Chris Berstler: 50:19

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