November 14, 2022 • 50 mins
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:
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Chris Berstler (00:02):
Welcome to the sibling Leadership Network
podcast. The sibling LeadershipNetwork is a national nonprofit
whose mission is to providesiblings of individuals with
disabilities, the informationsupport and tools to advocate
with their brothers and sistersand to promote the issue is
important to us and our entirefamilies. Hello, and thank you
(00:23):
for joining us for anotherepisode of the SLN podcast. This
month, we're joined by LynnCallaway and Barbara Corley to
talk about silver sips. Hello,thank you for joining us today.
Barbara Corley (00:34):
Hi, Chris. Good morning. How are you?
Lynne Calloway (00:36):
Happy to be here.
Chris Berstler (00:38):
We're happy to have you both here. Thank you
very much for joining us. So I'dlike to just kick things off and
ask you to briefly tell us aboutyourselves and your siblings or
anything else you want to sharewith us.
Lynne Calloway (00:49):
My name is Lynne Calloway. As Chris said, I'm a
wife, a mom of two adultchildren who are doing their
thing in the world right now.
But I'm also sibling. I'm athird born of four girls who are
generously spaced in age, to saythe least. I was I was blessed
(01:11):
with loving parents and learnedlike advocacy at the feet of a
mother who was a beast of anadvocate for all of us. But I
was the youngest of 10 at thetime when Leo was born Leah's my
sister, she's 55. She's in anartist. She's been employed for
(01:34):
a good portion of her life. Butafter our parents passed away,
she she stopped working. And isnow discovering her. Her life as
an artist. She's a music lover.
She's a goofball. She issometimes my my nemesis on the
(02:00):
worst day and my bestie everyday, I was employed for 40 years
professionally in the DD field,and spent 31 of those years with
Hamilton County DD services. AndOhio. I spent the last 16 of
those years gleefully workingdirectly with families as an
(02:24):
advocate, an informationresource and and a planning
support. And that consider thata gift. Right now, in
retirement. I just have threejobs. And I'm working as a as an
ambassador for an Ohioambassador for turning the life
(02:47):
force. My most recent venture,which I love, and just actually
asked to work do work with agroup that's doing some research
in the area of aging families,as a matter of fact. And the
other thing I'm doing is workingwith a another organization, the
(03:10):
Ohio sibs, you might be familiarwith that was asked to rejoin
their board and was happy to doso.
Barbara Corley (03:17):
Hi, my name is Barb Corley. I am the oldest of
two. My younger sister is just alittle bit shy of four years
younger than me. She was bornhealthy, and contracted
bacterial meningitis at the ageof five months of age. That was
around the time I was four. Sothat's kind of that left her
(03:40):
spastic quadriplegic, nonverbalnonambulatory visually impaired.
So she's basically the polaropposite to Lynn's sister, Leah
in that she requires 24 hourcare and supervision. Still,
quite the independent woman whoknows her what she wants and
what she likes. She is I justturned 50 In February, and she
(04:05):
is coming up on 47 next month.
So beyond that, since 1990, I'vebeen a direct support
professional. My sister wasactually one of the first if not
the first person in Pickawaycounty here in Ohio to be on the
I O waiver. And so when thatrolled out, they allow they
didn't allow parents at thetime, but they did allow
(04:26):
siblings to be professional orto be providers. So since 1990,
when I went into college, Ibecame a DSP. And I've been
doing that ever since and overthe years working full time as
well as doing that on the sidewith the goal of staying in the
loop. And, you know, collectinginformation as I went along
because I'm the only sibling. Sowhen my parents are gone, that's
(04:49):
the role that I'll step into tobe you know, I'm already her co
Guardian but stepping into thatrole a little more fully in In
2020, I left my corporate joband started my own consult
caregiver consulting business.
And I have teamed up withPickaway county development of
(05:11):
Pickaway County Board ofDevelopmental Disabilities. And
I am now their DSP liaison forPickaway. County. So I'm sort of
mentoring new providers as wellas offering support and
connection with existingproviders. So that's been
lovely. So much like when I've,I've been touched by the DD
population my entire life for avery large portion of it.
Chris Berstler (05:34):
So, in your own words, what is a silver sib?
Lynne Calloway (05:39):
Well, there's silver sib. In Ohio, a silver
sib is a baby boomer, who'sgrown up with a brother or
sister who has a developmentaldisability. We're an inclusive
group. So some of the primarycaregivers, or sorry, some of us
are primary caregivers, in inthe the wake of the loss of our
(06:03):
parents, some of us are stillwriting the next chapter like
BB, and and still partneringwith their aging parents to plan
for the future. I'm a seasonedprofessional and an advocate.
But I hosted informationsessions all the time in my
career. And notice that therewere rarely siblings in the
(06:24):
room. Lots of parents, not a lotof siblings, our parents really
thoughtfully prepare and plantfor life without them. And as
Leah aged, I really found myselfas her primary support, just
really desperate for a groupliving my life, people dealing
(06:45):
with the things I was dealingwith, and I encountered some of
them throughout my career,encountered them in my daily
life. But we weren't a formalnetwork, we just were friends
who kept each other up and andprovided each other information
and support. I was given anopportunity back in Gosh, 2018
(07:06):
at an Ohio sibs conference, toreally share my heart about
this, I was just so frustrated.
And I found that the audiencethat I spoke to really hurt me
and a lot of people felt thesame way. And that's when I had
the opportunity to kind of meetin a room at the hotel with Barb
and other and other sibs who aregoing through similar
(07:31):
situations. By 2019, we metformally at the next Ohio sibs
conference. And, you know, thatwas pre pandemic. So we did have
a year to connect. And as thepandemic hit, we sort of found
ourselves, guess what? Takingcare of our siblings. So we've
(07:54):
lost we've lost a little time.
But the work is still happeningin the background. And I'll
share some things later aboutwhat's going on with silver sips
today. The thing that I want tojust make sure that I include in
this conversation is that we'reaging sibs. A lot of us have
(08:17):
lost our brothers and sisters.
And I just want to sayexplicitly, you're still the
silver sieve. Your lifeexperience isn't erased by your
loss. The community is stillthere for people who have lost
their brother or sister with adisability.
Barbara Corley (08:37):
I would say I would support everything Lynne
said 100%. While I think theformal term of silver SIB
focuses the most on baby boomer,I have the silver showing up to
in my hair to prove that I amthe next wave of that
generation. Or the next wave ofthat movement. It is it's all
about I mean, it's it's scary aswe age anyway. But it is also
(09:03):
incredibly intimidating to takeon such a role. When you feel
like an island, which I have.
It's not been that long ago thatI didn't know any other
siblings. That's how I gotconnected to Ohio sibs. I was
looking for connection. And Iwas hoping to find someone who
had my same experience. But whatI quickly learned was regardless
of what the story looks like,regardless of whether or not you
(09:27):
know the details of your yoursiblings abilities, we all share
the same apprehensions we allshare the same. The same fears,
the same anxieties about thingsmoving forward the family
dynamic, having difficultconversations, I'm a very
proactive person rather thanreactive. And if there's
(09:48):
anything I can, you know if Ican stack the deck in my favor,
now, to save me some hasslelater, and that even includes
knowledge gathering That's whatI want to do.
Chris Berstler (10:01):
How does being a sibling in the Baby Boomer
generation set you apart fromlater 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 todate. So we're living longer.
And we are, we are aging. Andour brothers and sisters and our
parents are living longer. And,and we're all aging together, I
(10:31):
just want to say that I'm reallygrateful that we have medical
care that can that can providethat that, you know, provide
that for us. On the other hand,we're 40% of all US caregivers,
at this point, roughly 62% ofthe caregivers who are boomers
(10:52):
are female. And we're exhausted.
In a lot of cases, we don't talkabout it, we push forward. And
the result of that is that 30%of us usually have some sort of
a chronic health disorder ofsome sort. The there's a, as
everybody probably knows, ashortage of of caregivers right
(11:15):
now. And our support systemsthat are paid are somewhat low,
and we're having to fill in moreand more. So I feel personally
more of a strain right now thanI have before. And if you're
familiar with the term sandwichgeneration, you know, that we
(11:36):
care for our children and ourparents. And now we're caring
for our brothers and sisters aswell. Ours is a double decker.
I'm also the parent of, as Imentioned before, my son who's
an adult, he has a physicaldisability. So I always
(11:57):
described my sandwich as aDagwood. If you remember that,
from that cartoon, it has it hadlike for Dagwood made that
sandwich as big as he could. Andsometimes I could not get my my
mouth around it. So there's thatchallenge for boomers too.
Barbara Corley (12:18):
Yeah, I would totally agree. I mean, if coming
from the, from the Gen Xstandpoint, those are still all
valid, nothing's changed. Ithink those are, you know, I
personally, I do not havechildren. My husband is a
disabled military veteran. Sohe's a level in my sandwich, as
(12:38):
well as my parents and mysister. So I think one of the
things that sets at least my, mygeneration apart, as well as
Lin's really, is we've seen theinception of technology and the
internet, and what you know, inour lifetime, and what that's
done for connection, and whatthat's done for real resource,
(13:02):
access for people, justinformation, I mean, it's not
that long ago that you had aphonebook, you didn't have
Google. We live through that.
And we've seen that. So we'vealso lived through the early
part where we didn't know anyother siblings. And we've
witnessed the birth of this,this boom in recognizing our
demographic and in our, youknow, in the DD community, and
(13:25):
we have a voice now, and we havea presence, and our issues are
seen and heard. So that'stremendous. Future generations
are born kind of into that, andit's already existed. We've
watched it from its inception.
It's absolutely phenomenal tosee and has been needed for so
long, but I'm so glad it showedup when it did. And you know,
(13:46):
and hats off to siblingLeadership Network for that, for
being a driving force. That'shuge.
Chris Berstler (13:51):
What are some struggles and or blessings that
are unique to your generation ofsiblings.
Lynne Calloway (13:57):
I just I had three, three major blessings.
One, of course, that were thatwere able to live longer, so
that we're able to see all ofthose things that that mark just
mentioned, come to fruition. Ialso appreciate that I'm a I'm
here and able to support mysister. It's my pleasure to do
so. But I have a lot of friendswho you know, who didn't survive
(14:21):
and have their siblings don'thave the support that I feel
blessed to provide for for Leah.
We're working longer. We're likewhat we were actually one of the
wealthiest generation we werethe wealthiest generation and we
were bumped off by themillennials in 2019. So we're
fortunate to have the resources,in some cases to kind of help
(14:45):
support the family. We continueto make progress legislatively.
Barb mentioned that earlier.
Thank goodness we have thingsgoing on at the grassroots
level. And we have somelegislative activity and
representation at the at thestate and national level. So our
voices are being heardchallenges, well, we're busy,
(15:09):
we're busy, where we're livinglonger, but we're care for
everybody. I find itchallenging, because our lives
are always fluid and changingand you have to adapt, not just,
you know, season to season, Imean day to day, sometimes the
week can be a challenge. Leahrecently got really sick. And it
(15:38):
was it was six months of life onhold. And, and nothing, nothing
changes. When you come out ofthose places, those things that
were waiting, waiting on theside of the road for you,
somehow catch up to you. So, youknow, I became sick, trying to
be a caregiver for her duringthat tough time. I want to say
(16:02):
that interfacing with systems isa challenge sometimes. Barb said
they're, you know, they arecatching up. But some systems
don't know us. They don't knowwho we are. They don't they're
not really sure how to eveninterface with us repeating my
story, providing that durablepower of attorney in 15 places
(16:24):
in her life. And sometimes everyyear is proving who I am in her
life, when I'm showing up allthe time, is a little
frustrating sometimes for me, Iwant to do the work of
supporting her I want to be Iwant to spend my time and energy
making sure that her day and herhealth and where she lives. And
(16:48):
what she asked for is being isbeing supported and and in moved
forward that her vision for herlife is the thing that matters
to me most. But I find myselfstuck in a lot of administrative
muck. That doesn't change thesystem isn't responding that
(17:08):
way. At one point she was shewas sick while I was employed,
and I couldn't get familymedical leave for her. Because
FML doesn't have a inst doesn'thave statute that includes your
brothers and sisters. I can takecare of my parents, I can take
(17:29):
care of my uncle. I was able tohave bereavement time for for an
aunt, but my sister's caregiverand I couldn't get that time.
That's changing where you know,if you're in parenthesis, Locus,
you can you can prove thatyou're a person who's a regular
(17:49):
caregiver for your brother orsister, you can probably get
FML. But I would rather it besomething that families can
depend on. And not necessarilyhave it left up to, you know,
the whim of the of the employer.
Yeah, I do wish there was auniform way of recognizing our
relationship. I'm gonna say thisabout family support
(18:10):
organizations. There are moreand more out there. The spinal
bifida organization that webelong to, for my son has a as
always included brothers andsisters, and I thought the world
of them for that my daughter wasalways part of that
conversation. Leah doesn't havea diagnosis really.
(18:37):
Her disability occurred as aresult of a super brain injury
at birth. And there's no groupfor the head. So there's no
network that I can connectmyself to that will support you
know, support me that way. But Ido I would like for sibs to be
an explicit part of every familyinformation gathering. I want us
(19:02):
I want our names to be spoken.
So that people kind of get usedto hearing ah, brothers and
sisters are part of family andsips serves when they're when
parents pass away. I think itwould be helpful if systems had
a way of sort of helpingtransition us in some small way
into our roles. I've seensiblings actually be the only
(19:28):
support person for that brotheror sister and the system's
somehow wedges itself in betweenthem, that one person who would
be there for them and that andand their brother or sister. So
more support as we enter intothis role within a system
(19:48):
because we don't necessarily allknow 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 Idon't feel they're necessarily
generation specific. It'ssomething we're all going to
step into much like, much likeLea Lin, my sister doesn't
really have a diagnosis of that.
I mean, developmentally disabledis a broad category, she doesn't
(20:21):
have a group that's specific to,you know, a healthy infant that
contracts a disease and is leftin her in her condition. So
there is that that's achallenge, I guess I'm happy.
And I feel it's a challenge anda blessing to even have any sort
of a even a generalized Group ofsupport. While they can't speak
(20:45):
specifically, there are enoughcommonalities, I think that it,
I just feel blessed to be ableto connect to any kind of group
or individuals who share even afraction of that. And I think
that's definitely something to,you know, for anyone out there
listening, I would stress topeople is don't look necessarily
(21:07):
for someone who has the exactsame situation as you, right,
look for the commonalities.
Because it's, it's a challengeto find that because it's there
are all different nuances tothis. So I would say definitely,
to Lynn's point about one of theblessings is medical care, the
movement to bring the DDcommunity to the forefront
(21:27):
advocacy. Basically, we thecommunity doesn't hide in the
shadows anymore. And they'remuch more in the forefront and
they have a presence. And thatalone is having a trickle down
effect to the medical community.
I mean, I'm we're actuallyapproaching it next week with a
medical professional to get oversome basic health care for my
(21:50):
sister. How can we tweak this tomake this a better experience
for everybody involved, and he'sopen to that. That's not always
been the choice or the has notalways been the an option in the
past. So I think that's huge.
And that's just a blessing.
Again, Generation X and in thebaby boomers are seeing this
(22:11):
movement. It's trickling down toeverything to your point, Lynne,
about complication of systems,that's everywhere, I can tell
you the complication of workingwith the VA system is just as
complicated.
Lynne Calloway (22:22):
Absolutely.
Right. It is on top ofeverything else, we have to
know, we have to know everysystem, we got to know the
medical system, we've got toknow got to know the DV services
system, we've got to know wherehow to how to function in the
community and how to find thoseresources. 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 theclub sandwich generation and
describing that because it leadsme into my next question, What
experiences have you had withlayers being added to your club
sandwich? All haveresponsibilities as you age and
how have you learned to manageit?
Lynne Calloway (23:08):
We had a couple of circumstances I wanted to
share. One was that my son washaving a surgery at our local
children's hospital on the sameday, that my mother was having a
surgery across town at an at herhospital and my I remember my
father driving back and forthacross town because he didn't
(23:32):
want to you want to be there forhis grandson. He wanted to be
there for for his for his wife.
I mean, I hadn't really thoughtabout just thinking
generationally, you know, theimpact on even my parents, we
had another circumstance whereboth of my parents were on the
surgery, they were on the boardbecause in the hospital and buy
(23:53):
on the board, I mean, thesurgical board for the day, and
both of them at the same time.
We're having differentsurgeries, and in that moment,
and we were where we should havebeen. But all along in the back
of my mind, I was thinking aboutwhat's Lea going to need them
(24:17):
now how is she going to copewith this? And what are we going
to have to you know, how am Igoing to have to rearrange her
her day or what kind of supportit's there's this loop in the
back of my mind all the time inthe circumstances that that
focus more on you know, kind ofwhat her needs are going to be
as a result of those situationsI am in my life was for gosh 30
(24:40):
years caring for my children,you know, my husband working be
ending increasing support for mymother as she as she aged that
the sandwich sandwich was reallystacking Lea really didn't cope
well with my parents passingaway so we had to really you
know, make a lot of shifts inher life at that time, I just
(25:03):
used you ask what I did to copewith it. And I'm gonna be really
honest and say, I soughtcounseling when I, you know,
just to kind of stay steady. ButI'm not altogether sure that I
was coping that we'll I wasfunctioning, I was getting it
done, I was organized I waswhere I should have been when I
(25:24):
was supposed to be therepeople's appointments were met,
things were turned in relativelyon time to the organizations
that required reports, there aresome parts of that life, I don't
remember details of to beperfectly candid. What I'll say
is, and I'll probably share thisa little later, I would not
encourage people to live thatway, if they can avoid it. It is
(25:48):
a fast track to burnout, I wouldsuggest that, you know, siblings
while we are Cape wearing supermen and women, we're human. And
we also need to take care ofourselves.
Barbara Corley (26:00):
I completely agree. Lynne. Like I said
earlier, my husband's a disabledveteran. And he was career, so
almost 23 years in the military.
And he's got paybacks for that.
Now, as we jokingly say, youjump out of enough planes and
gravity catches up to you. Sohe's, you know, he's had, you
(26:22):
know, he suffered fromconcussions, traumatic brain
injury, and we had to deal withall of those on top of, you
know, I'm very blessed that mysister is healthy, that my
parents and I are a great team.
So I would say that what helpsit all what's helped you juggle
at all is to have some sort ofsupport system around you. My
husband had a knee replacement acouple years ago, and I had
(26:43):
friends step up and say, Whatcan I do to help you? And I
think one piece of advice I givepeople is when someone steps up,
to ask them to offer you helptake it, it can look like
anything, it can be, can I gopick up your groceries for you
say yes, this is no time to be ahero, you know, let people help
you and I had friends come sitwith him because I had to go
(27:05):
shift onto my DSP hat or mysister hat. And and deal with
that, as well as I just wantedsomeone to have eyes on him, you
know, especially in the earlystages when he was first after
surgery, recovering teamwork isso important. And it's not just
you know, if you don't have afamily dynamic for that, you
know, what's the old adage, youdon't have to be born into
(27:29):
family, necessarily. I havefriends who I consider family
who are tremendous support, theydon't have to live my
experience, but they haveempathy and compassion, and love
me and want to help me. So Iwould definitely say saying yes
to any help that you can getwas, but it was been a huge
resource. And like Lynn said,there's a constant mental loop
going. So you can'tunderestimate the power of
(27:52):
taking care of yourself. And I'mnot saying you have to do a spa
day, I'm saying just stop, sitdown and be still. It doesn't
have to be complicated. That'swhen I find my I am the most
renewed and refreshed just whenI am just still and quiet. My
brain can hiss and pop and stillspin, I just need to physically
(28:13):
slow down in, I guess whenyou're in the midst of all that
and juggling all that you havethat mental loop going. It's
basically you just focus onwhat's in front of you. Like
Lynn said, You've got two twoparents in the hospital or, you
know, your mother and your sonis in the hospital across town,
you just focus on right now. Andyou just deal with it as it
(28:35):
comes to you. And you do lookback and you do kind of forget
about it, because it's almostkind of I don't know if you can
speak to this land, but itbecomes very automatic. I've
kind of trained my brain overthe years to be able to compare
a dog and move and yeah, it's Icall it bobbing and weaving. And
that too. I do. I do. Icompartmentalize things. And I
(28:59):
don't mean it disrespectfully,but different areas of my life
are put into a bucket. And Ihave to look at them like that,
like Okay, today, what does thisbucket look like? And then the
rest of the minutia from theworld feels that around it. But
I mean, I know that specific toour caregiving roles, but I
honestly think it mean minus,maybe minus the caregiving role.
(29:21):
Everybody does thatautomatically. That's life
today. But you know, dodging,dodging all these different
needs and wants and but you addcaregiving on to it, and there's
that heart component, andthere's that, that that desire
and that drive to take care ofsomeone to the best of your
ability and that adds that addsto it as well on top of
(29:44):
everything else. So I would justencourage people my advice is,
take care of yourself. And evenin the small ways, it's it's
don't underestimate the littlesmall things.
Lynne Calloway (29:57):
By recently color coded my calendar I just
it's a little thing. I swear bycolor coding my calendar for
years, but it does. It's avisual 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 therestruggling to find the resources
that they need.
Lynne Calloway (30:22):
I guess the first thing I would encourage is
something Barb mentionedearlier. And that is, don't
delay and planning for a goodlife. Like the minute the minute
it occurs to you find a way tostart building that that vision
for a good life that you'regoing to be part of supporting
(30:42):
60% of siblings believe thatthey are going to become the
caregiver for their brother orsister. That's a That's a big
number. I don't have statisticsto support this. But my my, my
life experience with familiespoints to this truth. Most
people aren't automatically mostfamilies aren't automatically
(31:06):
thinking about the end of life.
They are not. We were still inmy my later years with the
County Board of DD getting callsfrom parents who were 90. And
brothers and sisters wereuninformed about what their
responsibilities could be. Sothat 60% of siblings who are
(31:27):
going to who believe they willbecome caregivers are always
prepared for that role. I'mgoing to say listen to your
sibling, listen to your part,your partner with your parents.
I know that's not alwayspossible for everyone to do
easily. But, you know, find thatpartnership. And I know Barb
will probably talk more aboutthat. Give parents credit.
(31:48):
That's something you know that Ithat I learned, it may even we
cannot sit in judgment, become aparent, and that will become so
obvious to you. There is nomanual, we all do the very best
we can our parents do the verybest they can. We need to
(32:08):
commend them for what they'vedone. It will do two things,
it'll honor them in the way thatthey really should be honored.
And it helps me gain some trust.
So they do let us in. So theywill give us you know, insight
into what's happening in thecontrol room of our brothers and
(32:29):
sisters lives that they arerunning, being engaged and be
intentional. We really have tobe like conscious. As we're
going through this it takes ittakes some energy but it's worth
it in the end 90% of siblingsexpect to live with their
brother or sister with adisability have a plan? What is
(32:52):
that going to look like? It maynot end up being that if you sit
down and think about how thepieces of that life we're going
to fit together. Encourage yourparents to do to do a state
planning of some sort. Encouragethem to leave a map that you can
follow and encourage them toinclude you in those those
(33:13):
meetings with the financialplanner. Ask be okay to ask for
help. And what are thoserelationships? Um, anybody there
are DSPS and my sisters like Iwill I will buy you a cupcake
just because I want you to knowwe value you connect with
sibling information networks.
That's advice that I would give.
(33:36):
There are several now Bart saidearlier we have we're blessed.
We are really fortunate. We havea national organization that
sibling Leadership Networksilver sips is also now a part
of we were already connected tothe sibling Leadership Network.
But now we're working with Ohioserves to make sure that those
(33:57):
resources are available for foraging siblings as well. There is
a group that's an internationalgroup of siblings with a mission
started by a very young man inhigh school.
This brilliant young man is nowoff to medical school, but it
just an excellent resource forpeople who are all over the
(34:19):
world and young talking to eachother. And there's one more that
I wanted to share. If you're notfamiliar with a sibling Support
Project has several web and chatresources for siblings at
various ages of life. I want tosay that not every sibling
relationship is the same andthat's okay. That that we
(34:41):
shouldn't compare ourselves toeach other. Lean on your own
experience. Lean on your ownexpertise, take it into the
meeting room with you take itinto the doctor's office. Take
it with you to BVR and DOD Dtake it with you when you go to
in to some spot in the communityand and you need to advocate for
(35:03):
your brother or sister, justtake that with you and know that
it's valued information, likeyour the Ph. D, for your family
member, and then mentor youngsiblings, if you can, so that
they can avoid those lifelandmines that we may have
stepped on. And some of theyounger siblings have told me,
(35:24):
If you, like baby boomers couldnot complain about your old age
ailments and that kind of thing,we probably listen a little more
closely. So we're going to takethat we're going to take that
advice to heart, and in tryingto keep our stuff a little more
upbeat, and informative. Butyeah, definitely put your arms
(35:45):
around a younger suit. If youhave 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 lightbeing shown on the sibling
journey, we're on the DOD, Dcommunity, keep looking for
resources that because new lightis being shown on those new ones
(36:11):
are developing all the time. Myother piece of advice to you is
I know there are a lot ofFacebook groups out there. You
don't have to, I recommend thisis what I've done. I've signed
up, and I just hover and I readand I follow. You don't have to
necessarily put your story outthere if you're not comfortable.
(36:31):
But you can gain wisdom fromothers who have gone before you
and who are going through itright now. I think it's
important early on to decide,you know, what's your vision of
a good life? What, what part orwhat role do you want to play in
your siblings life movingforward? Lynne and I have chosen
to be actively involved. That'snot for everybody. And I
(36:53):
understand that. You maybe youwant to be actively involved,
maybe you want to be on theperiphery, and whatever, but
decide what that looks like. Anddon't forget to include yourself
in that vision. You know, it maynot be perfect, what you thought
life would look like. But alsoadd yourself in there as well.
What's going to be good for yourfamily, your well being moving
(37:16):
forward as well, because you'rean integral part of this team.
And if you choose to be activelyinvolved, you're even on the
periphery, you still have a roleto play. And it's important to
take care of yourself and armyou know, arm yourself with that
knowledge that you need. Findyour resources, find your
people, what does that they saya sign of a good leader doesn't
have to know how to doeverything, but he surrounds
(37:38):
himself with good people. Youknow, my brain can only hold so
much. I want to know somebody orconnect myself to someone who's
got answers when I need them. SoI encourage people to just if
you find one little breadcrumb,I call it pull that thread, keep
pulling that thread and seewhere it takes you and what
other knowledge it expands into.
(37:59):
It can be a little bit of a seekand find learning acronyms
within systems and everythingelse. But like Lynn mentioned,
there are so many resources outthere. And they're more going to
just develop every day. So Ithink it's important to pull on
to that too. You don't have tobe an active active participant,
(38:22):
but dive in and take advantageof 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 eyeopening, you know, went into
went into a conversationexpecting lean in. And a lot of
the younger siblings werehandling things a little
differently, they really weren'tinterested, first of all, in
gathering in the way that wegather, they they're getting
(38:52):
information in places that maybea baby boomer might not be
looking, I felt like it was ourresponsibility to ensure that we
were getting that information inplaces that they could get it.
So we're going to just continueto keep doing that. The other
thing that the thing on theother side of the of the
(39:13):
spectrum in our in ourconversation was that they were
not able to really see thefuture. And I would say that,
you know, the future is hard tosee sometimes when you're
standing in your 20s or whenyou're standing in your 30s I
most certainly envisioned myselfas part of my sister's life when
(39:34):
I was that age, but standing init today, that was a black and
white image. It is in full colornow. And I could not have
anticipated what all thosecolors were going to be in all
of those facets of her life aregoing to be so even though you
can't see what it's going tolook like don't don't reject the
(39:57):
advice of people who have walkthrough it, don't go uninformed,
that would be my strongestadvice. It doesn't matter if you
can't see it, that's okay. Butyou know, don't go on informed
heed the heat the heat the wordsof others, and, and put yourself
(40:17):
in places where that informationis being discussed. And then
take what you need, you may notneed it all, you may not even be
able to hear it all in thatmoment, but take that
information in, prepare as muchas you can then and, and make
friends with somebody, you know,who's who's walked ahead of you,
who inspires you find your voicewould be my my other piece of
(40:40):
advice to younger siblings, youknow, each of us is going to
have a different lifeexperience. Don't compare
yourself to other people, I'mgoing 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'sa CIP support team within your
(41:04):
family members, disability groupdisability specific group, if
one exists for you, and be anadvocate, for others who are
going through your walk, I'mgonna I'm just gonna close out
with saying, you know, dealingwith parents can be challenging.
Not all parents share theenthusiasm that their children
(41:27):
do for supporting their brothersand sisters. I've heard lots of
parents in my in my career, saythat they don't want to burden
their children. And I had twopieces of advice for those
parents that is, the burdenwould be that you're no longer
here, and you've left yourchildren, your children who are
(41:50):
the caregivers uninformed. Andthe good life that you've built
for your child with adisability, then goes untended
to, you know, don't let's let'smake sure that there's that
continuity. So being getting youknow, dealing with your parents,
is going to require some someconscious thinking about how to
(42:11):
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 bestof your ability, keep open
dialogue with your parents aboutthe about the subjects. And I
know that I mean, I was I'mblessed with parents that were
very much a very strong team.
And we're all advocates for mysister. But we we did the future
(42:33):
planning journey. A few yearsago, I think we finished it
right before COVID hit. And thatwas a little challenge to get
some momentum getting thatmoving. It requires patience on
the side of the siblings to us,it's like, Okay, we have to go
do this. This is necessary forthe future. We see it very
pragmatically. Parents arelooking at it and dealing with,
(42:55):
Okay, who wants to go talk aboutdeath 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 theirchild is very vulnerable, and
that they may not be here,there, they won't be here to
take care of them. That hitsvery deep. And some people don't
(43:15):
want to deal with that. I'vetalked to a couple siblings and
parents are like, Oh, it'll justwork out. Okay, well, that's not
necessarily blowing it off.
There's more at the core ofthat. 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 anemotional response. And I think
if you know that going in, it'stremendously easier to move
(43:39):
forward with compassion andempathy, even for your own
parents. They're not trying tobe difficult. It's a nuanced and
a complicated journey forward.
So I think knowing that goingin, is incredibly important. I
think the my other big piece ofadvice is, aside from first
decide what role you want toplay moving forward, like I
(44:00):
said, Are you going to be fullon with it? Or are you going to
be on the periphery. Either way,get involved early, and just
collect pieces of informationalong 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. Collectlittle pieces along the way.
Some of that you may not need,some of it may be invaluable.
(44:22):
Just listen for little things,at this stages in our life. You
know, you know, Lynn and I bothare in a position where we've
collected a lot of that a lot ofthat has been was what do they
say baptism by fire. You collectyou know, the more you can
collect and know ahead of timeand the more proactive you can
be is so much better than beingreactive. Because you when you
(44:44):
don't have that knowledge. Itmakes things 10 times worse,
even if you just know people'snames of the county board where
your your sibling gets servicesthrough. So if something
horrible happens, you've got aresource and you've got a net
Someone to catch you to help youthrough it. It doesn't have to
be all the details and anencyclopedia of information,
(45:05):
capture little nuggets that willhopefully help you. And then
those again, you pull thatthread, you call that person,
that person tells you what to donext, you just have someone to
hold your hand through theentire 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 togethera more full and rich picture or
(45:28):
map that will help you
Chris Berstler (45:30):
amazing advice.
Thank you both very much. Inyour opinion, what has been the
best thing about being asibling,
Lynne Calloway (45:38):
I do feel like it's made me more empathic. I
was at least 10 years youngerthan I am. So I tend to protect
people and look out for folkseat, I've learned to do it, you
know, to step back and nothover, as Lea causing. I'm not
(46:01):
hovering as much now. But I am,but I tend to one, not just her,
but everybody around, you knowher friends to have a good life.
I'm more thoughtful about otherpeople what they're dealing with
there. And I think that's trueof most sibs. And that's what
the research bears. Itencouraged me into a career. It
(46:23):
was a choice between journalismand special education. And and
here I am 40 years in, and it'sbeen fulfilling. The other thing
is, my husband and I had aconversation the other day, he
is a big supporter of my sister.
And I want to give a shout outto two spouses. Because they are
(46:44):
a very special breed, the oneswho stick around and stay
engaged, they should they shouldbe knighted. They really should.
We were talking about how howpeople might see my sister and
I, we were we encounteredsomeone who asked me as she was
(47:04):
going into the nursing home formedical recovery. And the young
man or the gentleman who was theexecutive director, asked me
what her what level she is, shefunctioned at intellectually.
And it sort of threw me off likewhat age he asked me, what age
(47:24):
does she function at? And Icouldn't even answer that
question. Because that's not howI really think about people.
I've met people who didn't havea diagnosis or a file. But I
knew after getting to know them,there was you know, how to
(47:45):
interface with them, what theirstrengths were, what their
weaknesses were, and how toapproach them what kind of
things triggered them how to,you know, you figure those thing
out those things out when you'rewhen you're talking to people or
interfacing with people. And Ifeel that same way about people
with disabilities. And so I'mgoing to carry that message into
the world, to stop thinkingabout people with disabilities
(48:09):
as something or someone you needto diagnose, or put into a box
or categorize. You know, if youare someone who to use his terms
functions as a 10 year old, butyou're 55, it's really hard to
measure any kind of, you know,to calculate how that person
(48:32):
operates in real life. Just letpeople be, take your time, get
to know folks figure out whattheir interests are. And I think
that's, I'll take that as a giftfrom 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 meabout being a sibling? And the
phrase, the question was, Whoare you at your core? And oh, I
heard that it stopped me in mytracks. And I love those
introspective kind of things.
Because I'm always looking likewho am I at this stage in my
(49:10):
life? And when I heard that, Isat and I thought about it for
maybe a minute or so. And Ithought, I'm my sister Sister at
my core. Absolutely. She'staught me to be so much more
patient. This certainly creativeand resourceful, you know, she
can't get to the world. So wehave to bring the world to her.
(49:31):
And I've learned to use thoseskills, and every other area of
my life. Yes. And I just know, Iknow what my core I wouldn't be
who I am today if it weren't forher. We are so blessed. We're
just so blessed. And I thinkshe's she's definitely taught us
more than I think any otherhuman being possibly could.
Chris Berstler (49:55):
Thank you so much for sharing your wisdom and
advice with us today. It hasbeen An absolute pleasure to
have you on our podcast. It's sofor anyone listening any
resources that were shared, youcan find them in the description
of the podcast below. Thank youso 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):
Find resources, tools and information about the
sibling experience on siblingleadership dot board. The
sibling Leadership Network is anonprofit and we rely on support
from our audience. Find thedonation button on our homepage
and contribute to the evergrowing sibling movement.
Welcome to the sibling Leadership Network
podcast. The sibling LeadershipNetwork is a national nonprofit
whose mission is to providesiblings of individuals with
disabilities, the informationsupport and tools to advocate
with their brothers and sistersand to promote the issue is
important to us and our entirefamilies. Hello, and thank you
(00:23):
for joining us for anotherepisode of the SLN podcast. This
month, we're joined by LynnCallaway and Barbara Corley to
talk about silver sips. Hello,thank you for joining us today.
Barbara Corley (00:34):
Hi, Chris. Good morning. How are you?
Lynne Calloway (00:36):
Happy to be here.
Chris Berstler (00:38):
We're happy to have you both here. Thank you
very much for joining us. So I'dlike to just kick things off and
ask you to briefly tell us aboutyourselves and your siblings or
anything else you want to sharewith us.
Lynne Calloway (00:49):
My name is Lynne Calloway. As Chris said, I'm a
wife, a mom of two adultchildren who are doing their
thing in the world right now.
But I'm also sibling. I'm athird born of four girls who are
generously spaced in age, to saythe least. I was I was blessed
(01:11):
with loving parents and learnedlike advocacy at the feet of a
mother who was a beast of anadvocate for all of us. But I
was the youngest of 10 at thetime when Leo was born Leah's my
sister, she's 55. She's in anartist. She's been employed for
(01:34):
a good portion of her life. Butafter our parents passed away,
she she stopped working. And isnow discovering her. Her life as
an artist. She's a music lover.
She's a goofball. She issometimes my my nemesis on the
(02:00):
worst day and my bestie everyday, I was employed for 40 years
professionally in the DD field,and spent 31 of those years with
Hamilton County DD services. AndOhio. I spent the last 16 of
those years gleefully workingdirectly with families as an
(02:24):
advocate, an informationresource and and a planning
support. And that consider thata gift. Right now, in
retirement. I just have threejobs. And I'm working as a as an
ambassador for an Ohioambassador for turning the life
(02:47):
force. My most recent venture,which I love, and just actually
asked to work do work with agroup that's doing some research
in the area of aging families,as a matter of fact. And the
other thing I'm doing is workingwith a another organization, the
(03:10):
Ohio sibs, you might be familiarwith that was asked to rejoin
their board and was happy to doso.
Barbara Corley (03:17):
Hi, my name is Barb Corley. I am the oldest of
two. My younger sister is just alittle bit shy of four years
younger than me. She was bornhealthy, and contracted
bacterial meningitis at the ageof five months of age. That was
around the time I was four. Sothat's kind of that left her
(03:40):
spastic quadriplegic, nonverbalnonambulatory visually impaired.
So she's basically the polaropposite to Lynn's sister, Leah
in that she requires 24 hourcare and supervision. Still,
quite the independent woman whoknows her what she wants and
what she likes. She is I justturned 50 In February, and she
(04:05):
is coming up on 47 next month.
So beyond that, since 1990, I'vebeen a direct support
professional. My sister wasactually one of the first if not
the first person in Pickawaycounty here in Ohio to be on the
I O waiver. And so when thatrolled out, they allow they
didn't allow parents at thetime, but they did allow
(04:26):
siblings to be professional orto be providers. So since 1990,
when I went into college, Ibecame a DSP. And I've been
doing that ever since and overthe years working full time as
well as doing that on the sidewith the goal of staying in the
loop. And, you know, collectinginformation as I went along
because I'm the only sibling. Sowhen my parents are gone, that's
(04:49):
the role that I'll step into tobe you know, I'm already her co
Guardian but stepping into thatrole a little more fully in In
2020, I left my corporate joband started my own consult
caregiver consulting business.
And I have teamed up withPickaway county development of
(05:11):
Pickaway County Board ofDevelopmental Disabilities. And
I am now their DSP liaison forPickaway. County. So I'm sort of
mentoring new providers as wellas offering support and
connection with existingproviders. So that's been
lovely. So much like when I've,I've been touched by the DD
population my entire life for avery large portion of it.
Chris Berstler (05:34):
So, in your own words, what is a silver sib?
Lynne Calloway (05:39):
Well, there's silver sib. In Ohio, a silver
sib is a baby boomer, who'sgrown up with a brother or
sister who has a developmentaldisability. We're an inclusive
group. So some of the primarycaregivers, or sorry, some of us
are primary caregivers, in inthe the wake of the loss of our
(06:03):
parents, some of us are stillwriting the next chapter like
BB, and and still partneringwith their aging parents to plan
for the future. I'm a seasonedprofessional and an advocate.
But I hosted informationsessions all the time in my
career. And notice that therewere rarely siblings in the
(06:24):
room. Lots of parents, not a lotof siblings, our parents really
thoughtfully prepare and plantfor life without them. And as
Leah aged, I really found myselfas her primary support, just
really desperate for a groupliving my life, people dealing
(06:45):
with the things I was dealingwith, and I encountered some of
them throughout my career,encountered them in my daily
life. But we weren't a formalnetwork, we just were friends
who kept each other up and andprovided each other information
and support. I was given anopportunity back in Gosh, 2018
(07:06):
at an Ohio sibs conference, toreally share my heart about
this, I was just so frustrated.
And I found that the audiencethat I spoke to really hurt me
and a lot of people felt thesame way. And that's when I had
the opportunity to kind of meetin a room at the hotel with Barb
and other and other sibs who aregoing through similar
(07:31):
situations. By 2019, we metformally at the next Ohio sibs
conference. And, you know, thatwas pre pandemic. So we did have
a year to connect. And as thepandemic hit, we sort of found
ourselves, guess what? Takingcare of our siblings. So we've
(07:54):
lost we've lost a little time.
But the work is still happeningin the background. And I'll
share some things later aboutwhat's going on with silver sips
today. The thing that I want tojust make sure that I include in
this conversation is that we'reaging sibs. A lot of us have
(08:17):
lost our brothers and sisters.
And I just want to sayexplicitly, you're still the
silver sieve. Your lifeexperience isn't erased by your
loss. The community is stillthere for people who have lost
their brother or sister with adisability.
Barbara Corley (08:37):
I would say I would support everything Lynne
said 100%. While I think theformal term of silver SIB
focuses the most on baby boomer,I have the silver showing up to
in my hair to prove that I amthe next wave of that
generation. Or the next wave ofthat movement. It is it's all
about I mean, it's it's scary aswe age anyway. But it is also
(09:03):
incredibly intimidating to takeon such a role. When you feel
like an island, which I have.
It's not been that long ago thatI didn't know any other
siblings. That's how I gotconnected to Ohio sibs. I was
looking for connection. And Iwas hoping to find someone who
had my same experience. But whatI quickly learned was regardless
of what the story looks like,regardless of whether or not you
(09:27):
know the details of your yoursiblings abilities, we all share
the same apprehensions we allshare the same. The same fears,
the same anxieties about thingsmoving forward the family
dynamic, having difficultconversations, I'm a very
proactive person rather thanreactive. And if there's
(09:48):
anything I can, you know if Ican stack the deck in my favor,
now, to save me some hasslelater, and that even includes
knowledge gathering That's whatI want to do.
Chris Berstler (10:01):
How does being a sibling in the Baby Boomer
generation set you apart fromlater 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 todate. So we're living longer.
And we are, we are aging. Andour brothers and sisters and our
parents are living longer. And,and we're all aging together, I
(10:31):
just want to say that I'm reallygrateful that we have medical
care that can that can providethat that, you know, provide
that for us. On the other hand,we're 40% of all US caregivers,
at this point, roughly 62% ofthe caregivers who are boomers
(10:52):
are female. And we're exhausted.
In a lot of cases, we don't talkabout it, we push forward. And
the result of that is that 30%of us usually have some sort of
a chronic health disorder ofsome sort. The there's a, as
everybody probably knows, ashortage of of caregivers right
(11:15):
now. And our support systemsthat are paid are somewhat low,
and we're having to fill in moreand more. So I feel personally
more of a strain right now thanI have before. And if you're
familiar with the term sandwichgeneration, you know, that we
(11:36):
care for our children and ourparents. And now we're caring
for our brothers and sisters aswell. Ours is a double decker.
I'm also the parent of, as Imentioned before, my son who's
an adult, he has a physicaldisability. So I always
(11:57):
described my sandwich as aDagwood. If you remember that,
from that cartoon, it has it hadlike for Dagwood made that
sandwich as big as he could. Andsometimes I could not get my my
mouth around it. So there's thatchallenge for boomers too.
Barbara Corley (12:18):
Yeah, I would totally agree. I mean, if coming
from the, from the Gen Xstandpoint, those are still all
valid, nothing's changed. Ithink those are, you know, I
personally, I do not havechildren. My husband is a
disabled military veteran. Sohe's a level in my sandwich, as
(12:38):
well as my parents and mysister. So I think one of the
things that sets at least my, mygeneration apart, as well as
Lin's really, is we've seen theinception of technology and the
internet, and what you know, inour lifetime, and what that's
done for connection, and whatthat's done for real resource,
(13:02):
access for people, justinformation, I mean, it's not
that long ago that you had aphonebook, you didn't have
Google. We live through that.
And we've seen that. So we'vealso lived through the early
part where we didn't know anyother siblings. And we've
witnessed the birth of this,this boom in recognizing our
demographic and in our, youknow, in the DD community, and
(13:25):
we have a voice now, and we havea presence, and our issues are
seen and heard. So that'stremendous. Future generations
are born kind of into that, andit's already existed. We've
watched it from its inception.
It's absolutely phenomenal tosee and has been needed for so
long, but I'm so glad it showedup when it did. And you know,
(13:46):
and hats off to siblingLeadership Network for that, for
being a driving force. That'shuge.
Chris Berstler (13:51):
What are some struggles and or blessings that
are unique to your generation ofsiblings.
Lynne Calloway (13:57):
I just I had three, three major blessings.
One, of course, that were thatwere able to live longer, so
that we're able to see all ofthose things that that mark just
mentioned, come to fruition. Ialso appreciate that I'm a I'm
here and able to support mysister. It's my pleasure to do
so. But I have a lot of friendswho you know, who didn't survive
(14:21):
and have their siblings don'thave the support that I feel
blessed to provide for for Leah.
We're working longer. We're likewhat we were actually one of the
wealthiest generation we werethe wealthiest generation and we
were bumped off by themillennials in 2019. So we're
fortunate to have the resources,in some cases to kind of help
(14:45):
support the family. We continueto make progress legislatively.
Barb mentioned that earlier.
Thank goodness we have thingsgoing on at the grassroots
level. And we have somelegislative activity and
representation at the at thestate and national level. So our
voices are being heardchallenges, well, we're busy,
(15:09):
we're busy, where we're livinglonger, but we're care for
everybody. I find itchallenging, because our lives
are always fluid and changingand you have to adapt, not just,
you know, season to season, Imean day to day, sometimes the
week can be a challenge. Leahrecently got really sick. And it
(15:38):
was it was six months of life onhold. And, and nothing, nothing
changes. When you come out ofthose places, those things that
were waiting, waiting on theside of the road for you,
somehow catch up to you. So, youknow, I became sick, trying to
be a caregiver for her duringthat tough time. I want to say
(16:02):
that interfacing with systems isa challenge sometimes. Barb said
they're, you know, they arecatching up. But some systems
don't know us. They don't knowwho we are. They don't they're
not really sure how to eveninterface with us repeating my
story, providing that durablepower of attorney in 15 places
(16:24):
in her life. And sometimes everyyear is proving who I am in her
life, when I'm showing up allthe time, is a little
frustrating sometimes for me, Iwant to do the work of
supporting her I want to be Iwant to spend my time and energy
making sure that her day and herhealth and where she lives. And
(16:48):
what she asked for is being isbeing supported and and in moved
forward that her vision for herlife is the thing that matters
to me most. But I find myselfstuck in a lot of administrative
muck. That doesn't change thesystem isn't responding that
(17:08):
way. At one point she was shewas sick while I was employed,
and I couldn't get familymedical leave for her. Because
FML doesn't have a inst doesn'thave statute that includes your
brothers and sisters. I can takecare of my parents, I can take
(17:29):
care of my uncle. I was able tohave bereavement time for for an
aunt, but my sister's caregiverand I couldn't get that time.
That's changing where you know,if you're in parenthesis, Locus,
you can you can prove thatyou're a person who's a regular
(17:49):
caregiver for your brother orsister, you can probably get
FML. But I would rather it besomething that families can
depend on. And not necessarilyhave it left up to, you know,
the whim of the of the employer.
Yeah, I do wish there was auniform way of recognizing our
relationship. I'm gonna say thisabout family support
(18:10):
organizations. There are moreand more out there. The spinal
bifida organization that webelong to, for my son has a as
always included brothers andsisters, and I thought the world
of them for that my daughter wasalways part of that
conversation. Leah doesn't havea diagnosis really.
(18:37):
Her disability occurred as aresult of a super brain injury
at birth. And there's no groupfor the head. So there's no
network that I can connectmyself to that will support you
know, support me that way. But Ido I would like for sibs to be
an explicit part of every familyinformation gathering. I want us
(19:02):
I want our names to be spoken.
So that people kind of get usedto hearing ah, brothers and
sisters are part of family andsips serves when they're when
parents pass away. I think itwould be helpful if systems had
a way of sort of helpingtransition us in some small way
into our roles. I've seensiblings actually be the only
(19:28):
support person for that brotheror sister and the system's
somehow wedges itself in betweenthem, that one person who would
be there for them and that andand their brother or sister. So
more support as we enter intothis role within a system
(19:48):
because we don't necessarily allknow 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 Idon't feel they're necessarily
generation specific. It'ssomething we're all going to
step into much like, much likeLea Lin, my sister doesn't
really have a diagnosis of that.
I mean, developmentally disabledis a broad category, she doesn't
(20:21):
have a group that's specific to,you know, a healthy infant that
contracts a disease and is leftin her in her condition. So
there is that that's achallenge, I guess I'm happy.
And I feel it's a challenge anda blessing to even have any sort
of a even a generalized Group ofsupport. While they can't speak
(20:45):
specifically, there are enoughcommonalities, I think that it,
I just feel blessed to be ableto connect to any kind of group
or individuals who share even afraction of that. And I think
that's definitely something to,you know, for anyone out there
listening, I would stress topeople is don't look necessarily
(21:07):
for someone who has the exactsame situation as you, right,
look for the commonalities.
Because it's, it's a challengeto find that because it's there
are all different nuances tothis. So I would say definitely,
to Lynn's point about one of theblessings is medical care, the
movement to bring the DDcommunity to the forefront
(21:27):
advocacy. Basically, we thecommunity doesn't hide in the
shadows anymore. And they'remuch more in the forefront and
they have a presence. And thatalone is having a trickle down
effect to the medical community.
I mean, I'm we're actuallyapproaching it next week with a
medical professional to get oversome basic health care for my
(21:50):
sister. How can we tweak this tomake this a better experience
for everybody involved, and he'sopen to that. That's not always
been the choice or the has notalways been the an option in the
past. So I think that's huge.
And that's just a blessing.
Again, Generation X and in thebaby boomers are seeing this
(22:11):
movement. It's trickling down toeverything to your point, Lynne,
about complication of systems,that's everywhere, I can tell
you the complication of workingwith the VA system is just as
complicated.
Lynne Calloway (22:22):
Absolutely.
Right. It is on top ofeverything else, we have to
know, we have to know everysystem, we got to know the
medical system, we've got toknow got to know the DV services
system, we've got to know wherehow to how to function in the
community and how to find thoseresources. 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 theclub sandwich generation and
describing that because it leadsme into my next question, What
experiences have you had withlayers being added to your club
sandwich? All haveresponsibilities as you age and
how have you learned to manageit?
Lynne Calloway (23:08):
We had a couple of circumstances I wanted to
share. One was that my son washaving a surgery at our local
children's hospital on the sameday, that my mother was having a
surgery across town at an at herhospital and my I remember my
father driving back and forthacross town because he didn't
(23:32):
want to you want to be there forhis grandson. He wanted to be
there for for his for his wife.
I mean, I hadn't really thoughtabout just thinking
generationally, you know, theimpact on even my parents, we
had another circumstance whereboth of my parents were on the
surgery, they were on the boardbecause in the hospital and buy
(23:53):
on the board, I mean, thesurgical board for the day, and
both of them at the same time.
We're having differentsurgeries, and in that moment,
and we were where we should havebeen. But all along in the back
of my mind, I was thinking aboutwhat's Lea going to need them
(24:17):
now how is she going to copewith this? And what are we going
to have to you know, how am Igoing to have to rearrange her
her day or what kind of supportit's there's this loop in the
back of my mind all the time inthe circumstances that that
focus more on you know, kind ofwhat her needs are going to be
as a result of those situationsI am in my life was for gosh 30
(24:40):
years caring for my children,you know, my husband working be
ending increasing support for mymother as she as she aged that
the sandwich sandwich was reallystacking Lea really didn't cope
well with my parents passingaway so we had to really you
know, make a lot of shifts inher life at that time, I just
(25:03):
used you ask what I did to copewith it. And I'm gonna be really
honest and say, I soughtcounseling when I, you know,
just to kind of stay steady. ButI'm not altogether sure that I
was coping that we'll I wasfunctioning, I was getting it
done, I was organized I waswhere I should have been when I
(25:24):
was supposed to be therepeople's appointments were met,
things were turned in relativelyon time to the organizations
that required reports, there aresome parts of that life, I don't
remember details of to beperfectly candid. What I'll say
is, and I'll probably share thisa little later, I would not
encourage people to live thatway, if they can avoid it. It is
(25:48):
a fast track to burnout, I wouldsuggest that, you know, siblings
while we are Cape wearing supermen and women, we're human. And
we also need to take care ofourselves.
Barbara Corley (26:00):
I completely agree. Lynne. Like I said
earlier, my husband's a disabledveteran. And he was career, so
almost 23 years in the military.
And he's got paybacks for that.
Now, as we jokingly say, youjump out of enough planes and
gravity catches up to you. Sohe's, you know, he's had, you
(26:22):
know, he suffered fromconcussions, traumatic brain
injury, and we had to deal withall of those on top of, you
know, I'm very blessed that mysister is healthy, that my
parents and I are a great team.
So I would say that what helpsit all what's helped you juggle
at all is to have some sort ofsupport system around you. My
husband had a knee replacement acouple years ago, and I had
(26:43):
friends step up and say, Whatcan I do to help you? And I
think one piece of advice I givepeople is when someone steps up,
to ask them to offer you helptake it, it can look like
anything, it can be, can I gopick up your groceries for you
say yes, this is no time to be ahero, you know, let people help
you and I had friends come sitwith him because I had to go
(27:05):
shift onto my DSP hat or mysister hat. And and deal with
that, as well as I just wantedsomeone to have eyes on him, you
know, especially in the earlystages when he was first after
surgery, recovering teamwork isso important. And it's not just
you know, if you don't have afamily dynamic for that, you
know, what's the old adage, youdon't have to be born into
(27:29):
family, necessarily. I havefriends who I consider family
who are tremendous support, theydon't have to live my
experience, but they haveempathy and compassion, and love
me and want to help me. So Iwould definitely say saying yes
to any help that you can getwas, but it was been a huge
resource. And like Lynn said,there's a constant mental loop
going. So you can'tunderestimate the power of
(27:52):
taking care of yourself. And I'mnot saying you have to do a spa
day, I'm saying just stop, sitdown and be still. It doesn't
have to be complicated. That'swhen I find my I am the most
renewed and refreshed just whenI am just still and quiet. My
brain can hiss and pop and stillspin, I just need to physically
(28:13):
slow down in, I guess whenyou're in the midst of all that
and juggling all that you havethat mental loop going. It's
basically you just focus onwhat's in front of you. Like
Lynn said, You've got two twoparents in the hospital or, you
know, your mother and your sonis in the hospital across town,
you just focus on right now. Andyou just deal with it as it
(28:35):
comes to you. And you do lookback and you do kind of forget
about it, because it's almostkind of I don't know if you can
speak to this land, but itbecomes very automatic. I've
kind of trained my brain overthe years to be able to compare
a dog and move and yeah, it's Icall it bobbing and weaving. And
that too. I do. I do. Icompartmentalize things. And I
(28:59):
don't mean it disrespectfully,but different areas of my life
are put into a bucket. And Ihave to look at them like that,
like Okay, today, what does thisbucket look like? And then the
rest of the minutia from theworld feels that around it. But
I mean, I know that specific toour caregiving roles, but I
honestly think it mean minus,maybe minus the caregiving role.
(29:21):
Everybody does thatautomatically. That's life
today. But you know, dodging,dodging all these different
needs and wants and but you addcaregiving on to it, and there's
that heart component, andthere's that, that that desire
and that drive to take care ofsomeone to the best of your
ability and that adds that addsto it as well on top of
(29:44):
everything else. So I would justencourage people my advice is,
take care of yourself. And evenin the small ways, it's it's
don't underestimate the littlesmall things.
Lynne Calloway (29:57):
By recently color coded my calendar I just
it's a little thing. I swear bycolor coding my calendar for
years, but it does. It's avisual 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 therestruggling to find the resources
that they need.
Lynne Calloway (30:22):
I guess the first thing I would encourage is
something Barb mentionedearlier. And that is, don't
delay and planning for a goodlife. Like the minute the minute
it occurs to you find a way tostart building that that vision
for a good life that you'regoing to be part of supporting
(30:42):
60% of siblings believe thatthey are going to become the
caregiver for their brother orsister. That's a That's a big
number. I don't have statisticsto support this. But my my, my
life experience with familiespoints to this truth. Most
people aren't automatically mostfamilies aren't automatically
(31:06):
thinking about the end of life.
They are not. We were still inmy my later years with the
County Board of DD getting callsfrom parents who were 90. And
brothers and sisters wereuninformed about what their
responsibilities could be. Sothat 60% of siblings who are
(31:27):
going to who believe they willbecome caregivers are always
prepared for that role. I'mgoing to say listen to your
sibling, listen to your part,your partner with your parents.
I know that's not alwayspossible for everyone to do
easily. But, you know, find thatpartnership. And I know Barb
will probably talk more aboutthat. Give parents credit.
(31:48):
That's something you know that Ithat I learned, it may even we
cannot sit in judgment, become aparent, and that will become so
obvious to you. There is nomanual, we all do the very best
we can our parents do the verybest they can. We need to
(32:08):
commend them for what they'vedone. It will do two things,
it'll honor them in the way thatthey really should be honored.
And it helps me gain some trust.
So they do let us in. So theywill give us you know, insight
into what's happening in thecontrol room of our brothers and
(32:29):
sisters lives that they arerunning, being engaged and be
intentional. We really have tobe like conscious. As we're
going through this it takes ittakes some energy but it's worth
it in the end 90% of siblingsexpect to live with their
brother or sister with adisability have a plan? What is
(32:52):
that going to look like? It maynot end up being that if you sit
down and think about how thepieces of that life we're going
to fit together. Encourage yourparents to do to do a state
planning of some sort. Encouragethem to leave a map that you can
follow and encourage them toinclude you in those those
(33:13):
meetings with the financialplanner. Ask be okay to ask for
help. And what are thoserelationships? Um, anybody there
are DSPS and my sisters like Iwill I will buy you a cupcake
just because I want you to knowwe value you connect with
sibling information networks.
That's advice that I would give.
(33:36):
There are several now Bart saidearlier we have we're blessed.
We are really fortunate. We havea national organization that
sibling Leadership Networksilver sips is also now a part
of we were already connected tothe sibling Leadership Network.
But now we're working with Ohioserves to make sure that those
(33:57):
resources are available for foraging siblings as well. There is
a group that's an internationalgroup of siblings with a mission
started by a very young man inhigh school.
This brilliant young man is nowoff to medical school, but it
just an excellent resource forpeople who are all over the
(34:19):
world and young talking to eachother. And there's one more that
I wanted to share. If you're notfamiliar with a sibling Support
Project has several web and chatresources for siblings at
various ages of life. I want tosay that not every sibling
relationship is the same andthat's okay. That that we
(34:41):
shouldn't compare ourselves toeach other. Lean on your own
experience. Lean on your ownexpertise, take it into the
meeting room with you take itinto the doctor's office. Take
it with you to BVR and DOD Dtake it with you when you go to
in to some spot in the communityand and you need to advocate for
(35:03):
your brother or sister, justtake that with you and know that
it's valued information, likeyour the Ph. D, for your family
member, and then mentor youngsiblings, if you can, so that
they can avoid those lifelandmines that we may have
stepped on. And some of theyounger siblings have told me,
(35:24):
If you, like baby boomers couldnot complain about your old age
ailments and that kind of thing,we probably listen a little more
closely. So we're going to takethat we're going to take that
advice to heart, and in tryingto keep our stuff a little more
upbeat, and informative. Butyeah, definitely put your arms
(35:45):
around a younger suit. If youhave 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 lightbeing shown on the sibling
journey, we're on the DOD, Dcommunity, keep looking for
resources that because new lightis being shown on those new ones
(36:11):
are developing all the time. Myother piece of advice to you is
I know there are a lot ofFacebook groups out there. You
don't have to, I recommend thisis what I've done. I've signed
up, and I just hover and I readand I follow. You don't have to
necessarily put your story outthere if you're not comfortable.
(36:31):
But you can gain wisdom fromothers who have gone before you
and who are going through itright now. I think it's
important early on to decide,you know, what's your vision of
a good life? What, what part orwhat role do you want to play in
your siblings life movingforward? Lynne and I have chosen
to be actively involved. That'snot for everybody. And I
(36:53):
understand that. You maybe youwant to be actively involved,
maybe you want to be on theperiphery, and whatever, but
decide what that looks like. Anddon't forget to include yourself
in that vision. You know, it maynot be perfect, what you thought
life would look like. But alsoadd yourself in there as well.
What's going to be good for yourfamily, your well being moving
(37:16):
forward as well, because you'rean integral part of this team.
And if you choose to be activelyinvolved, you're even on the
periphery, you still have a roleto play. And it's important to
take care of yourself and armyou know, arm yourself with that
knowledge that you need. Findyour resources, find your
people, what does that they saya sign of a good leader doesn't
have to know how to doeverything, but he surrounds
(37:38):
himself with good people. Youknow, my brain can only hold so
much. I want to know somebody orconnect myself to someone who's
got answers when I need them. SoI encourage people to just if
you find one little breadcrumb,I call it pull that thread, keep
pulling that thread and seewhere it takes you and what
other knowledge it expands into.
(37:59):
It can be a little bit of a seekand find learning acronyms
within systems and everythingelse. But like Lynn mentioned,
there are so many resources outthere. And they're more going to
just develop every day. So Ithink it's important to pull on
to that too. You don't have tobe an active active participant,
(38:22):
but dive in and take advantageof 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 eyeopening, you know, went into
went into a conversationexpecting lean in. And a lot of
the younger siblings werehandling things a little
differently, they really weren'tinterested, first of all, in
gathering in the way that wegather, they they're getting
(38:52):
information in places that maybea baby boomer might not be
looking, I felt like it was ourresponsibility to ensure that we
were getting that information inplaces that they could get it.
So we're going to just continueto keep doing that. The other
thing that the thing on theother side of the of the
(39:13):
spectrum in our in ourconversation was that they were
not able to really see thefuture. And I would say that,
you know, the future is hard tosee sometimes when you're
standing in your 20s or whenyou're standing in your 30s I
most certainly envisioned myselfas part of my sister's life when
(39:34):
I was that age, but standing init today, that was a black and
white image. It is in full colornow. And I could not have
anticipated what all thosecolors were going to be in all
of those facets of her life aregoing to be so even though you
can't see what it's going tolook like don't don't reject the
(39:57):
advice of people who have walkthrough it, don't go uninformed,
that would be my strongestadvice. It doesn't matter if you
can't see it, that's okay. Butyou know, don't go on informed
heed the heat the heat the wordsof others, and, and put yourself
(40:17):
in places where that informationis being discussed. And then
take what you need, you may notneed it all, you may not even be
able to hear it all in thatmoment, but take that
information in, prepare as muchas you can then and, and make
friends with somebody, you know,who's who's walked ahead of you,
who inspires you find your voicewould be my my other piece of
(40:40):
advice to younger siblings, youknow, each of us is going to
have a different lifeexperience. Don't compare
yourself to other people, I'mgoing 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'sa CIP support team within your
(41:04):
family members, disability groupdisability specific group, if
one exists for you, and be anadvocate, for others who are
going through your walk, I'mgonna I'm just gonna close out
with saying, you know, dealingwith parents can be challenging.
Not all parents share theenthusiasm that their children
(41:27):
do for supporting their brothersand sisters. I've heard lots of
parents in my in my career, saythat they don't want to burden
their children. And I had twopieces of advice for those
parents that is, the burdenwould be that you're no longer
here, and you've left yourchildren, your children who are
(41:50):
the caregivers uninformed. Andthe good life that you've built
for your child with adisability, then goes untended
to, you know, don't let's let'smake sure that there's that
continuity. So being getting youknow, dealing with your parents,
is going to require some someconscious thinking about how to
(42:11):
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 bestof your ability, keep open
dialogue with your parents aboutthe about the subjects. And I
know that I mean, I was I'mblessed with parents that were
very much a very strong team.
And we're all advocates for mysister. But we we did the future
(42:33):
planning journey. A few yearsago, I think we finished it
right before COVID hit. And thatwas a little challenge to get
some momentum getting thatmoving. It requires patience on
the side of the siblings to us,it's like, Okay, we have to go
do this. This is necessary forthe future. We see it very
pragmatically. Parents arelooking at it and dealing with,
(42:55):
Okay, who wants to go talk aboutdeath 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 theirchild is very vulnerable, and
that they may not be here,there, they won't be here to
take care of them. That hitsvery deep. And some people don't
(43:15):
want to deal with that. I'vetalked to a couple siblings and
parents are like, Oh, it'll justwork out. Okay, well, that's not
necessarily blowing it off.
There's more at the core ofthat. 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 anemotional response. And I think
if you know that going in, it'stremendously easier to move
(43:39):
forward with compassion andempathy, even for your own
parents. They're not trying tobe difficult. It's a nuanced and
a complicated journey forward.
So I think knowing that goingin, is incredibly important. I
think the my other big piece ofadvice is, aside from first
decide what role you want toplay moving forward, like I
(44:00):
said, Are you going to be fullon with it? Or are you going to
be on the periphery. Either way,get involved early, and just
collect pieces of informationalong 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. Collectlittle pieces along the way.
Some of that you may not need,some of it may be invaluable.
(44:22):
Just listen for little things,at this stages in our life. You
know, you know, Lynn and I bothare in a position where we've
collected a lot of that a lot ofthat has been was what do they
say baptism by fire. You collectyou know, the more you can
collect and know ahead of timeand the more proactive you can
be is so much better than beingreactive. Because you when you
(44:44):
don't have that knowledge. Itmakes things 10 times worse,
even if you just know people'snames of the county board where
your your sibling gets servicesthrough. So if something
horrible happens, you've got aresource and you've got a net
Someone to catch you to help youthrough it. It doesn't have to
be all the details and anencyclopedia of information,
(45:05):
capture little nuggets that willhopefully help you. And then
those again, you pull thatthread, you call that person,
that person tells you what to donext, you just have someone to
hold your hand through theentire 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 togethera more full and rich picture or
(45:28):
map that will help you
Chris Berstler (45:30):
amazing advice.
Thank you both very much. Inyour opinion, what has been the
best thing about being asibling,
Lynne Calloway (45:38):
I do feel like it's made me more empathic. I
was at least 10 years youngerthan I am. So I tend to protect
people and look out for folkseat, I've learned to do it, you
know, to step back and nothover, as Lea causing. I'm not
(46:01):
hovering as much now. But I am,but I tend to one, not just her,
but everybody around, you knowher friends to have a good life.
I'm more thoughtful about otherpeople what they're dealing with
there. And I think that's trueof most sibs. And that's what
the research bears. Itencouraged me into a career. It
(46:23):
was a choice between journalismand special education. And and
here I am 40 years in, and it'sbeen fulfilling. The other thing
is, my husband and I had aconversation the other day, he
is a big supporter of my sister.
And I want to give a shout outto two spouses. Because they are
(46:44):
a very special breed, the oneswho stick around and stay
engaged, they should they shouldbe knighted. They really should.
We were talking about how howpeople might see my sister and
I, we were we encounteredsomeone who asked me as she was
(47:04):
going into the nursing home formedical recovery. And the young
man or the gentleman who was theexecutive director, asked me
what her what level she is, shefunctioned at intellectually.
And it sort of threw me off likewhat age he asked me, what age
(47:24):
does she function at? And Icouldn't even answer that
question. Because that's not howI really think about people.
I've met people who didn't havea diagnosis or a file. But I
knew after getting to know them,there was you know, how to
(47:45):
interface with them, what theirstrengths were, what their
weaknesses were, and how toapproach them what kind of
things triggered them how to,you know, you figure those thing
out those things out when you'rewhen you're talking to people or
interfacing with people. And Ifeel that same way about people
with disabilities. And so I'mgoing to carry that message into
the world, to stop thinkingabout people with disabilities
(48:09):
as something or someone you needto diagnose, or put into a box
or categorize. You know, if youare someone who to use his terms
functions as a 10 year old, butyou're 55, it's really hard to
measure any kind of, you know,to calculate how that person
(48:32):
operates in real life. Just letpeople be, take your time, get
to know folks figure out whattheir interests are. And I think
that's, I'll take that as a giftfrom 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 meabout being a sibling? And the
phrase, the question was, Whoare you at your core? And oh, I
heard that it stopped me in mytracks. And I love those
introspective kind of things.
Because I'm always looking likewho am I at this stage in my
(49:10):
life? And when I heard that, Isat and I thought about it for
maybe a minute or so. And Ithought, I'm my sister Sister at
my core. Absolutely. She'staught me to be so much more
patient. This certainly creativeand resourceful, you know, she
can't get to the world. So wehave to bring the world to her.
(49:31):
And I've learned to use thoseskills, and every other area of
my life. Yes. And I just know, Iknow what my core I wouldn't be
who I am today if it weren't forher. We are so blessed. We're
just so blessed. And I thinkshe's she's definitely taught us
more than I think any otherhuman being possibly could.
Chris Berstler (49:55):
Thank you so much for sharing your wisdom and
advice with us today. It hasbeen An absolute pleasure to
have you on our podcast. It's sofor anyone listening any
resources that were shared, youcan find them in the description
of the podcast below. Thank youso 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):
Find resources, tools and information about the
sibling experience on siblingleadership dot board. The
sibling Leadership Network is anonprofit and we rely on support
from our audience. Find thedonation button on our homepage
and contribute to the evergrowing sibling movement.
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