November 22, 2023 • 35 mins
We’ve heard many times before that you can’t care for others if you’re not caring for yourself, but it’s easy to overlook your needs and feel guilty for prioritizing yourself. We are facing a burnout epidemic and caregivers are being hit the hardest, but the good news is you’re not alone. People around the country are dealing with these same issues and have found solutions to help them balance themselves and their passion. Hear the stories of three different caretakers, the struggles they face, and what they do to give back to themselves on this episode of Well-Being. Join Jess Waizmann, Community ABA Administrator at Boundless, Lisa Comes, Service and Support Advisor at Ohio Association of County Boards and mother of a son with disabilities, and Julie Callahan, mother of an adult son who Boundless serves, to hear real life examples of self-care.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Scott Light (00:03):
Welcome everyone to Wellbeing
you by Boundless. Boundless is anonprofit that provides
residential support, autismservices, primary health care,
day programs, counseling and awhole lot more to children and
adults. Our mission is to builda world that realizes the
boundless potential of allpeople. I'm your host, Scott
(00:23):
light. To our guests, we have aquick fill in the blank question
to start off this episode.
Julie, why don't you begin herefor us, caregivers can better
take care of themselves byblank?
Julie Callahan (00:36):
Getting some sleep, eating healthy, drinking
lots of water, making medicalappointments.
Scott Light (00:43):
Okay, that's good, good, good stuff. Jess how about
you?
Jessica Waizmann (00:47):
I think just being aware of how you're
feeling, how that feels in yourbody, and then engaging in
coping, calming self-careactivities around that,
Scott Light (00:57):
Okay, Lisa?
Lisa Comes (00:59):
I'm gonna go for nurturing relationships and
taking a risk.
Scott Light (01:04):
Well, that is our theme this month, taking care of
the people who take care of allof us; caregivers. And with
that, let me introduce you tothe voices that you are hearing,
the voices of our guests.
Jessica Waizmann is anadministrator of ABA services
here at Boundless. JulieCallahan is a parent of an
individual who has served hereat Boundless, in fact, for a
very long time. So we'll talkabout that. Julie is also a
(01:26):
parent peer support specialistat Nationwide Children's
Hospital. And Lisa Comes is aservice and support adviser for
the Ohio Association of CountyBoards, and also has an adult
son with a disability as well.
Welcome to you all.
Julie Callahan (01:43):
Thank you.
Jessica Waizmann (01:43):
Thank you.
Lisa Comes (01:43):
Good to be here, Scott.
Scott Light (01:44):
It's good to have all of you here. So, let me get
each of you to expound on yourrapid fire answers there, if you
would. Julie, let me come backto you. You talked about, well,
just some, let's call themtactical things that people can
do around their health, gettinggood sleep, eating well, and
exercising, can you talk aboutthose a little bit more?
Julie Callahan (02:05):
When you're a caretaker of an individual who
has some special needs, it'svery important to take care of
your body because you need to behealthy, you need to live a long
time to care for your child. Soit's important to try to get
some sleep, if your child willallow it, you know, eating
healthy, you know, not ignoringwarning signs, making doctor's
appointments, keeping up withyour physicals. If you can't
(02:28):
take care of yourself, you can'ttake care of someone else.
Scott Light (02:32):
Yeah, yeah, we've heard that a lot from people who
have come to our podcastepisodes here. Jess to you, you
were talking about coping andcalming skills, let me get you
to expound on that if you would,for our listeners.
Jessica Waizmann (02:45):
Sure. We work on this a lot with the
individuals we serve, but itreally extends beyond that to
the guardians and caretakers ofthe individuals we serve. To our
staff, this was something weweren't ever taught growing up,
that I think is really relevantto all people, but especially
(03:05):
people that are in a caregiverrole. You know, being aware of
how we're feeling, and then alsohow that feels in your body.
Just kind of normalizing thatand being able to be aware, you
know, when I am sad, this is howit feels, I feel like I have a
headache. Just being aware ofthat. And there can be, kind of,
(03:28):
multiple feelings and multiplefeelings in your body, depending
on what you're experiencing. Andkind of what, you know, the
other participants havereferenced, just finding those
self-care routines as well. Whatmakes you feel better, right?
And there's a laundry list ofexamples. And I don't think we
(03:49):
need to go through them. But Ido think that having several in
your repertoire, and being ableto lean into even five or 10
different things that you know,kind of help you feel healthy
and connected to others, andcalm and comfortable is really,
really important.
Scott Light (04:10):
I love the diversity of answers all three
of you are providing right outof the gate. And Lisa that
brings me to yours, nurturingand taking a risk. Boy, explain
that one. That's really good.
Lisa Comes (04:23):
Well, actually, Jessica just gave me a great
segue when she talked aboutmaking you feel connected with
others. So, when I think ofthings, you know, the most
important thing for myself andmy son and for us to thrive in
our life is to be connected tomultiple people. And that takes
(04:44):
work and it takesintentionality. It has ever
since he was little. I mean wewere blessed with a big family
he had sisters and that helpsright off the bat because your
circle is bigger. But it's scaryand that comes, that's where the
risk is. There's a risk when youhave a person with a significant
disability to reach out topeople outside of your immediate
family and for, you know whetherit's you know, a service in the
(05:07):
community or a paid support orfor friendship or a ride or
because you're sad, you know,that's a risk. And it's even
more of a risk when your childhas a disability, because you
want them to have people. So I,you know, I am all about
connection, and that that's whatkeeps me going. I mean, I'm not
so good at making medicalappointments for myself, and
(05:30):
it's something I really work on,and I'm so glad there's people
to remind me of that part. Butwhat really gets me up every
morning is knowing that I havepeople in my life and that my
son has people in his life thatif something happens to either
one of us, we're going to beokay. And that's what, you know,
I love it. I mean, and that's tome, the biggest caregiver peace
(05:50):
of mind that I have. And sowe'll talk a little bit but as
I've worked in the field, I'veworked with little teeny 0, 1,
2-year-old kids, and I've workedwith aging folks, you know, and
I see the people who make thechoices to really put folks in a
community setting and then Ihave an opportunity to try and
(06:13):
make connections with all kindsof people. And those are the
people that continue to thriveand make it so,
Scott Light (06:18):
We all need our tribe.
Lisa Comes (06:19):
We need our people.
I said people need people.
That's a song right?
Scott Light (06:23):
People need people, yes!
Lisa Comes (06:25):
Barbra Streisand, right?
Scott Light (06:27):
Well, you know what, you mentioned your son.
Let's talk about John Ross alittle bit. Tell us more about
him. And then also tell usabout, is it Prader-Willi
Julie Callahan (06:36):
Yeah, yeah. So John Ross is 25, I think you
syndrome?
said that. And he is stillliving at home with me right
now. Because even though I've,you know, tried really hard to
get in the community, I haven'tsucceeded in allowing him to
leave the house, right. But hisdisability is pretty unique in
the fact that it is a Chromosome15 abnormality that he was born
(07:00):
with. And the general symptomsthat, you know, create problems
for him, are around a voracioushunger, which I hate that word
'voracious hunger,' it justmeans he's always starving. So
if he's around food, he'sthinking about how, "I better
eat, I may never eat again." Andthat's a really interesting
(07:21):
disability to have when you havea mom, that 1) is a foodie. And
2) believes that you need lotsof people in your life, because
people come with food. It's, youcan't keep him in a lockdown
situation all the time if youwant him to experience life. And
that's a real struggle forpeople with Prader-Willi
(07:42):
syndrome. So I do spend a lot ofintentional time trying to
figure out the places and thepeople that can be part of his
life, and still keep him safeand healthy and have fun. But
yeah, he is working virtuallyfrom home as, actually, a
Medicaid biller. He had thewonderful opportunity to do a
(08:02):
post secondary school, he has alot of good academic skills. But
he also you know, is obese, andhas health problems due to his
overweight. And he also drives acar. So he's kind of all over
the place, iterally. And so thethe risk thing, mixing risk with
responsibility and a good lifeand safety is really a big area
(08:24):
that I spend a lot of time with.
And it gives me a lot of joy forhim. and it gives me a lot of
headaches because I kind of givehim a little too much latitude
sometimes maybe. So yeah, that'skind of my thing.
Scott Light (08:39):
Well, we appreciate you sharing your personal story
and your lived experience there.
And, Julie, let me come to youand ask you, in a similar sense,
if you would tell us aboutJackson because Jackson has been
coming here to the Boundlesscampus. Do I have this right,
since he was five?
Julie Callahan (08:55):
That's correct.
So he's 19 now,he's extremely charismatic and
Scott Light (08:56):
Tell us about Jackson.
Wow. And Jess you know Jackson?
handsome and athletic. But withthat said, he's also nonverbal.
He's profoundly autistic. Levelthree is what they call it now.
He engages in high intensityself injury and aggression. And
he's been a lot to manage andBoundless has been there with us
(09:20):
since he was five. We've been inand out of hospitals a lot
throughout his life to help tryto manage those. He also has
several medical conditions,including epilepsy. He has some
pretty bad reactions tomedications, so it's really hard
to medicate him. And some ofthose medications have caused
(09:43):
hospitalizations. He was in ahospital for up to two years
while we were looking forsomeplace for him to live that
would be able to support hishigh intensity needs and his
medical conditions and luckilywe ended up back here in
Columbus and Boundless is takingcare of him and his housing. And
(10:07):
they're supporting him, both inschool and in his daily living
Jessica Waizmann (10:15):
Oh, yeah, since he was five.
Scott Light (10:17):
Wow. Talk about that relationship a little bit.
Jessica Waizmann (10:20):
Sure. Well, I mean, I worked directly with
him, you know, intermittentlyover the years, helped to
support a home base program whenhe was still living at home with
his family. Yeah, and actuallyhave subbed and helped out in
his current home. Yeah, he'sreally just a great guy. And I'm
(10:42):
happy to know that he's grownand in a really good, safe home.
Scott Light (10:48):
Let's come back to a couple of themes here that
we're going to discuss when itcomes to caregivers. And I'll go
around the horn, whoever wantsto jump in here, but super broad
question, what challenges docaregivers face when it comes to
their own self care?
Julie Callahan (11:05):
I can start with that. I think caregivers of
those with special needs spendsignificantly more time taking
care of their child than thatof, you know, an average parent.
And so I think the challengesare the amount of time needed to
support your child you havetherapies, you have doctor's
(11:25):
appointments, you have school,you have paperwork, you have
agencies you're meeting with. Iusually call myself the CEO of
Jackson, because it's a lot tomanage and organize. But you
don't have a lot of naturalsupports, you know, you don't
really fit in with your friendsand family because they don't
really understand what's goingon so you become very isolated.
(11:46):
You don't, you know, you can'tjust go out and do anything
because nobody can watch yourchild, right? And you don't,
it's hard to balance your otherchildren, your relationships,
your friendships, because you'reneeded to take care of your
child. So I think that is a bigchallenge.
I was jumping in right therewith isolation, you know, again,
(12:08):
going back to the relationshipidea, I think the biggest, you
know, pitfall is when you dofeel alone. And it's real. I
mean, even for, you know, I makeit sound like I do a lot of
that, but there's still a lot oftime where you feel very
unheard, and alone in your, youknow in your life, you know, and
(12:33):
your struggles, I guess. Sothat's when I know I need to do
some of the great techniquesthat you guys brought up, you
know, is number one, you know,just kind of like spending some
time and eating healthy andtaking care of myself physically
and sleeping, and those kinds ofthings. Because there are so
many people in my life. And Ijust sometimes get into that
really isolated, where I justdon't feel like they really get
(12:56):
what's going on. So that thatdefinitely hits home for me too.
Jessica Waizmann (13:00):
I think that's where connecting with services,
having service providers thatare able to assist can really
play a role. I think something Isee a lot as well, both with our
staff and the caretakers that wesupport, caregivers that we
support. Making sure to taketime to play to spend time with
(13:21):
that individual and enjoy yourtime together. Outside of
demands outside of any kind ofstructure, just taking that time
every day to be able to connectand kind of enjoy each other's
company as much as possible. Trynot to over commit to things
especially I mean, this isabsolutely relevant to staff too
(13:43):
right? Not kind of overworking,making sure to have that work
life balance. Spending yourenergy wisely, you know, burnout
has a lot of effects and beingable to kind of manage your
energy and again, just kind ofnot over committing can be
(14:04):
really beneficial in terms ofjust keeping those reserves.
Scott Light (14:09):
Jess, you really teed up the next thing. I'd like
for again for all three of youto jump in on and that is now
that we have a little bit ofhindsight, not that, you know, a
worldwide pandemic is over. Butlooking back, my goodness, what
did we learn from COVID-19 andall this? And what wrenches did
(14:29):
COVID-19 throw into this mix ofcaregiving for kids and adults
with special needs?
Lisa Comes (14:37):
My son and I actually thrived during
COVID-19. And I don't, and I'veheard that from other families
too, because there weren't asmany things that you were
missing out on or that you coulddo or that you could like. It
was a really strange idea. Itcertainly brought out the
importance of thoserelationships and the people
that you just couldn't not bewith like, who were your real
(14:59):
people? And who really was thereto help you? But it's almost,
you know, maybe I got FOMO? Idon't know. But I mean, it was
like, it was it was kind of arelief. And maybe also, you
know, just because I work in,you know, a pretty taxing job.
And it was new for me at thetime. But there was that relief
that might, the expectationswere lowered. So, you know, it
(15:23):
was a good thing. And it kind ofreminded me that maybe I was
probably doing too much and overcommitting right, and feeling
too worried about what I wasmissing out on, instead of just
kind of enjoying and being andfocusing on the most important
Scott Light (15:35):
You know, what, Lisa, my wife has said, again,
people.
now that we can look back, but Ican remember her saying this in
the moment, too. During COVID,she said, and again, if with
perspective, that she liked thatlife was slower and that she was
taking in moments better. Toyour point, she was. And she
(15:58):
just felt like...
Lisa Comes (15:58):
It's kind of like when you have a snow day. And
you just can't do anything buthave hot chocolate and go
sledding.
Scott Light (16:03):
That's a great comparison.
Lisa Comes (16:07):
for me being kind of over the top all the time, and
that it really did force, someslowdowns, so.
Julie Callahan (16:18):
I'm going to swing the pendulum the other
way,
Lisa Comes (16:20):
Alright,
Julie Callahan (16:22):
I've found that when, during the height of the
pandemic, you know, serviceswere shut down. So people who
had some supports lost thosesupports. So then you had that
caretaker burnout, becauseyou're the only one there and
you're experiencing things andthere was nobody there to help,
you know, tap out with. And evenon the medical side, you know,
(16:46):
your speech and OTs were shutdown, your diagnostic
appointments were shut down. Sothere's such a backlog of people
on these long wait lists thathave been even trying to get
diagnosis or, you know, supportsin a medical setting, that have
like been waiting one or twoyears to even get supports and
(17:06):
services or a diagnosis even so,I think that was the main effect
and just the lack of supportsand getting out and that lack of
routine, so many of the kidsneed. So, you know, they're used
to going to school, they're usedto going to different things.
And then when that didn'thappen, you know, those
(17:27):
behaviors raise up, you don'thave anybody there to support.
So I see a lot of parents thatwere in crisis during that time.
Scott Light (17:36):
And parents had to become educators like at the
flip of a switch. And I knowthat if I had to do that,
thankfully, my kids were, youknow, beyond high school and in
college at that time, but itwould have been horrible. I'm
not an educator, I am not atrained educator, and could not
have become one.
Julie Callahan (17:53):
Yes. So for even for me, for my typical children.
I'm like, I don't know, commoncore math. I don't know. I don't
want to know it, was like theanswer's four, I don't know how
you got that.
Scott Light (18:02):
Exactly, exactly.
Yeah,
Jessica Waizmann (18:04):
We saw families struggle. And we
actually never discontinued ourin-home services and kind of
bulked it up during that timebecause a lot of our individuals
who were not in school reallyhad an increased need for
in-home support. But thatisolation piece, that lack of
community inclusion andconnection during that time was
(18:28):
difficult for a lot of ourfamilies, that we serve, but
also for our staff. And I haveseen with some of our staff that
kind of taking a step back andreprioritizing and prioritizing
their families over work, whichI do think ultimately has had a
positive impact on some of myco-workers. And you know, just
(18:50):
being able to kind of reframethings and approach it from a
different perspective.
Scott Light (18:56):
Speaking of work, I'd like to talk to all three of
you about what you do on a dailybasis, not just what you're
doing with your respectivefamilies, but also every single
day and just with that, tell ourlisteners more about ABA
services here at Boundless
Jessica Waizmann (19:11):
Sure. So I oversee our community based ABA
services in central region forBoundless and we mostly work in
individuals homes, providingopportunities to build and
develop a variety of skills thatmight be relevant to those
individuals, as well as workingto reduce any kind of
(19:32):
challenging behavior that mightbe occurring. Working with
parents and families, as well ona kind of assisting and
facilitating all of that aswell. So we have a really large
team of behavior specialists andanalysts. And they oversee
services we have behaviortechnicians that are providing
(19:54):
that one-on-one support. We alsopartner with other community
based settings, so daycarecenters, adult day programs,
schools. So it's not exclusivelyhome base, but predominantly.
And I just really think thatworking in community settings is
so relevant, that generalizationof skills is not as much of a
(20:17):
struggle, they're working onthose skills in the context that
they're going to be using them.
Right, especially when we whenwe do in-homework.
Scott Light (20:25):
Julie, you've mentioned a parent to multiple
children here, but also yourwork as a parent peer support
specialist at NationwideChildren's, tell us about that
work.
Julie Callahan (20:35):
So the good thing that's come out of me
being a caretaker for my son,Jackson is learning all the
services in the community thatare available, the educational
systems and how to work throughthings, how to support him
behaviorally. So an opportunitycame open at Nationwide
(21:00):
Children's for a parent peersupport specialist, and that is
certified through the State ofOhio. And we basically support
parents who have children whoare going through mental health
crisis, if you know, andreminding them to care for
themselves, and how to care fortheir children. And whether
that's, you know, advocating orlooking for resources,
(21:23):
connecting them with groups andother families that are
experiencing the same thing sothat they know that they're not
alone.
Scott Light (21:32):
And Lisa, you can also talk about this work in a
in a 360 way with what you'vementioned, in terms of your
family with John Ross, but alsoyour role at OACB. Tell us about
that.
Julie Callahan (21:43):
Yeah, I actually, you know, I worked in
the disability field for sevenyears, or 10 years, actually,
before my, John Ross was evenborn. And I just kind of fell in
to it. I was a speech andhearing therapist working in a
school for the county board ofDD with folks with pretty
profound disabilities. And hewas my third child, and you use
(22:04):
that word 360. And I was like, Iremember when he was born. And I
was like, Yeah, I can't likewhen I got the diagnosis, I was
like, I cannot work this andlive this, I am not, you know,
and I took seven years off andjust focused on him and family
and had another child. So I hadfour all together. But then when
it was time to get back and hewas going to school, I went back
(22:26):
to the County Board, and Iworked as an SSA, on that
service and supportadministrator for Lucas County
Board of DD in both children,adults and eligibility. And
eventually, actually rightbefore the pandemic, as we were
talking, that was one of the bigthings that probably affected me
in the pandemic was that I hadaccepted a job with the Ohio
Association of County Boards tosupport service and support
(22:50):
advisors across the state, likethree months before the
pandemic, so I was supposed tobe traveling all over the state
meeting people doingprofessional development, and
then all of a sudden, I wascompletely 100%, virtual, doing
a lot more kind of advocacy andemergency work and, you know,
advocating for everything wecould possibly do to get people
(23:12):
services that they needed. So,I've had that last four years,
it'll be four years soon, whereI'm, you know, kind of, OACB
only I'm the only personthere's, about 2300 service and
support administrators acrossour 88 counties. And, you know,
they are, we're experiencing allthe things we've experienced
(23:34):
with DSPs right now, where, youknow, nobody goes to college to
be a service and supportadministrator. And nobody goes
to be a case manager inchildren's services, or, you
know, and so we get people whonever thought they would do
this, and now it's a job. Andthere's a lot of training and
understanding and rules. God,there's so many rules. And many
(24:01):
of them aren't parents, theirparents to anybody, many of them
are still kids. And so, youknow, my oldest is 30. And she's
seven years older than a lot ofSSA's. So, there's some great
people in the county coards, andI really, absolutely enjoy
supporting the county boards andall that they do. But, you know,
(24:22):
it's a tough, complicated systemthat we all work in. And
actually, we've been talkingabout self-care with SSA's for
the past two years, three yearsbecause the burnout is terrible.
We have turnover, you know,close to 25-30% right now. So,
you know, it's all those thingstaking care of each other. And
(24:43):
I'm doing the same thing withthem. I'm trying to connect them
with each other you know, all ofa sudden thankfully with the
virtual options, we're able toget SSA's is to realize that you
know Marion County. I'm justthrowing out Marion, is not,
that's not the whole world andyou know and trying to learn
that things could be donedifferently might be done
differently. And maybe there's abetter way, and to learn from
(25:05):
eachother and, you know, promotea little better consistency,
because we, we all struggle withthat 88 county boards, deciding
how to implement things is, is abig task. And they work hard at
it. And some people do reallygood. But we need, we need to
keep working at trying to getthat consistent message and
(25:28):
giving families and peopleserved the best services
available. So I love my job. Andit has brought some great
opportunities to my son, becauseof knowing this system and
understanding it, I'm veryblessed. But it's also brought
to my other children, being inthe disability field, it's one
of my favorite things aboutbeing a mom, is that I have
(25:49):
three daughters, along with JohnRoss, and every one of them have
decided to do something in thehuman services field. And you
know, and some of them wanted tohave nothing to do with people
with disabilities, which is notvery kind, but you know... no, I
mean, they obviously but anurse, a doctor, and now a
counselor, you know, so thoseare kind,
Scott Light (26:08):
They're serving, for sure.
Lisa Comes (26:10):
Yeah! And they love it. And they affect everybody
around them when they talkabout, you know, being a
sibling. And so, that's such ablessing of what we have done as
family members, you know, tobring up people and give people
a different perspective. So I'mreally proud. Good job, Julie.
Jessica Waizmann (26:28):
Yeah, and I love that you brought up your
children kind of going into thisfield, because of their personal
experience, we see that. I mean,I make the assumption that all
of us that are going into thehuman services field, have
something that brought us here,and that makes us really
passionate and compassionate andgood at our jobs, right? But I
(26:50):
think because we all have thosepersonal things that bring us
here, being really compassionateand supportive with each other
is so important. I know, youknow, we've been talking a lot
about self care, but also justcaring for each other and being,
you know, supportive of ourco-workers. And I think that
that's such a critical piecethat maybe could be missed,
(27:11):
right? But it is important forus, I don't know, just to be in
a healthy work environment andbe able to take care of each
other too.
Julie Callahan (27:22):
It's lot of stress, it's a lot of pressure
to figure everything out, keepyour kids safe, keep them
healthy, help them to live asindependently as they are able
to be that's, you know, a lot ofpressure and a lot of need. And
a lot of resources are neededand,
Scott Light (27:41):
And those pressures are real. I looked at some
numbers from the Centers forDisease Control. So these are
national numbers, but they'restill worth absolutely looking
at. Caregivers often pay a highprice for for their labors of
love. Let me run a few numbersby you. 35% of caregivers have
(28:01):
difficulty finding time forthemselves. 29% experienced
emotional and physical stressfrom their various roles. 54%
said their health has gottenworse due to their caregiving
responsibilities, and 29% havedifficulty balancing their
family and workresponsibilities. Couple of
(28:23):
questions and again, just jumpin. Do you think some of these
numbers could be under reported?
And then I'm just wondering aswell? Are there some surprises
in those numbers to to any ofyou?
Julie Callahan (28:34):
I definitely think those aren't probably
totally accurate. Because a lotof people will just say, "We're
fine, I'm fine." I've also heardanother statistic that a special
needs parent experiences thesame PTSD with the chronic
stress comparable to that of acombat soldier. And you know,
(28:54):
he's constantly on edge, you'revigilant of your surroundings,
you have to over plan for everypossibility. It's exhausting
mentally. So that's why you havethat caregiver burnout.
Jessica Waizmann (29:06):
From both the caregivers of the individuals we
serve and our staff. And, and Ithink maybe even more broadly, I
think people in general don'tnecessarily take the time to
really engage in healthyself-care, you know, taking that
time for themselves, maybe evenkind of outside of a caregiver
(29:27):
role. I just don't think it'ssomething that we all have a lot
of practice doing. So yeah, Idefinitely think those numbers
are low.
Julie Callahan (29:36):
When I was looking at this and thinking
about talking about it, I waslike, who is a caregiver? You
know, what, where did they getthose numbers? Because who isn't
a caregiver? And, you know, it'sso hard to measure, you know,
within the disability world, youknow, what, who's the most
challenging person to care for,and it really is more about the
self-care, right? It's moreabout how are you? How do you
(29:57):
deal with stress and you know, Ihave I know people who, you
know, they choose caregiving,but they don't have anybody
necessarily to caregive, butthey're just as stressed and
mental health, you know what Imean being issues for them?
Because that's something iswired in them to be that, you
know, that's what they do theyseek it out. And I do, I just
think there's that there'ssomething about, I mean, there's
(30:18):
no doubt when it's your childor, you know, a loved one, that
it's going to be more intense.
So I'm assuming those are wherethe numbers come from, but very
underreported. I mean, there isno doubt that, you know, I don't
think many of us even realize,you know, the health issues. I
remember I was in some studyduring the, it was probably this
one, during the pandemic, wherethey were asking questions about
(30:39):
all that, and you know, how youwere feeling in isolation and
all that. And I didn't hadn'thadn't ever even thought about
my physical problems that were,that could have been attributed
to some of the stuff until I'dbeen doing it for like, a year.
And I was like, wow. You know,like, so, there's so it's so
hard to self assess that.
Scott Light (30:59):
Yeah. Well, and researchers and doctors will say
the data is unequivocal nowabout stress, and that there are
two things, that it compoundsover the years, and that it's it
can be invisible, right? If we,if we're not if we're not paying
attention to it. Let me ask thisas we start to wrap our
conversation here. And as welook at the calendar, we're in
(31:21):
November. It's a great timeheading into the holidays. But
yes, it's also a stressful time.
Thanksgiving tables can be abounty of food, and stress,
let's just be honest. As we'reheading into the holidays, how
do each of you take just aminute maybe, or minutes,
plural, to take a little timeright now to decompress?
Jessica Waizmann (31:45):
Really allocating energy to the things
that need to be addressed. Notover committing to social
activities, to family demands,things like that. But also
taking that time off work,making sure to, you know, have
that work life balance duringthese times, because your
(32:06):
personal life can be a lot moredemanding during the holidays,
and so being able to have thatbalance around work, you know,
is even more important.
Julie Callahan (32:15):
I'm gonna go with endorphins, whatever I can
do to get them. That's kind ofwhat I do. I like the quick
fixes. You know what you guyscan tell I'm a pretty
spontaneous person. Recently, myson and I were hanging out, and
it was Halloween time, and I wasI don't know why I hadn't done
anything very exciting all day,right? Just did the normal
stuff. And I was like, "Come on,tell me something we can go do
(32:38):
that will just be fun." And hewas like, "It's a mystery trip."
So he drove me. And we wentthrough a haunted carwash. OMG.
Two minutes of screaming gleefulendorphins, and I hate haunts,
but it was so, I talked aboutit, we talked about it for days
(32:58):
afterwards, I was like, "Oh, myGod tell them we went to the..."
you know, and he's a haunt guy,like, that's what he does. And
he knows I don't like it. So,you know, anyway, I mean, you
know, that was a fun way. Youknow, obviously, I'm a big
nature person walking is my iseverything I need to walk I need
silence or nature sounds, youknow, when I'm walking. And then
(33:18):
recently, it's pickleball.
Pickleball releases all theendorphins for me, but it's not
minutes, it's hours. So, youknow, I am blessed that there is
time and my son's older and Ihave some ways to get to
pickleball. But that has beenreally a good outlet for me
lately. So exercise would be myother kind of generic word
because I really feel good afterit. It really gives you that
(33:40):
oomph.
Scott Light (33:42):
There you go.
Julie?
Julie Callahan (33:44):
I think setting boundaries and being able to say
no, and don't overextendyourself. I haven't learned
these lessons yet, but I'mworking on it. And realizing
that, you know, your holiday isgonna look different than what
people expect. And you know,that's okay. You know, my kids
don't like turkey. So maybe wehave pizza, I don't know. But,
(34:07):
you know, setting up aenvironment that you feel
comfortable in what your childfeels comfortable in. And then,
you know, taking time foryourself like, you know, Mindful
Minutes is what I call them.
Giving yourself like, twominutes to like, just meditate
or, you know, do somethingcreative that you enjoy, or you
know, listen to a podcast orread a book. I don't have a lot
(34:31):
of time to read but I'm in mycar a lot. So listening, you
know, to a podcast or listeningto songs I like, whatever it is,
just take those moments when youcan to steal them away because
all your other time is spentcaring for others, but I think
boundaries is the main one andyou know, developing
(34:53):
relationships with people whounderstand and creating your
environment creating yourvillage as I said.
Your tribe together.
Scott Light (35:05):
Yeah, this is such an important topic especially
again right now as we're headinginto the holidays. Thank you all
for coming in and joining thisepisode.
Jessica Waizmann (35:14):
Thank you.
Lisa Comes (35:14):
Thank you
Julie Callahan (35:15):
Thanks
Scott Light (35:16):
To our listeners you can be part of episodes to
come you can always email usyour questions or comments at
podcast@iamboundless.org. Thisis the Wellbeing podcast brought
to you by Boundless
Welcome everyone to Wellbeing
you by Boundless. Boundless is anonprofit that provides
residential support, autismservices, primary health care,
day programs, counseling and awhole lot more to children and
adults. Our mission is to builda world that realizes the
boundless potential of allpeople. I'm your host, Scott
(00:23):
light. To our guests, we have aquick fill in the blank question
to start off this episode.
Julie, why don't you begin herefor us, caregivers can better
take care of themselves byblank?
Julie Callahan (00:36):
Getting some sleep, eating healthy, drinking
lots of water, making medicalappointments.
Scott Light (00:43):
Okay, that's good, good, good stuff. Jess how about
you?
Jessica Waizmann (00:47):
I think just being aware of how you're
feeling, how that feels in yourbody, and then engaging in
coping, calming self-careactivities around that,
Scott Light (00:57):
Okay, Lisa?
Lisa Comes (00:59):
I'm gonna go for nurturing relationships and
taking a risk.
Scott Light (01:04):
Well, that is our theme this month, taking care of
the people who take care of allof us; caregivers. And with
that, let me introduce you tothe voices that you are hearing,
the voices of our guests.
Jessica Waizmann is anadministrator of ABA services
here at Boundless. JulieCallahan is a parent of an
individual who has served hereat Boundless, in fact, for a
very long time. So we'll talkabout that. Julie is also a
(01:26):
parent peer support specialistat Nationwide Children's
Hospital. And Lisa Comes is aservice and support adviser for
the Ohio Association of CountyBoards, and also has an adult
son with a disability as well.
Welcome to you all.
Julie Callahan (01:43):
Thank you.
Jessica Waizmann (01:43):
Thank you.
Lisa Comes (01:43):
Good to be here, Scott.
Scott Light (01:44):
It's good to have all of you here. So, let me get
each of you to expound on yourrapid fire answers there, if you
would. Julie, let me come backto you. You talked about, well,
just some, let's call themtactical things that people can
do around their health, gettinggood sleep, eating well, and
exercising, can you talk aboutthose a little bit more?
Julie Callahan (02:05):
When you're a caretaker of an individual who
has some special needs, it'svery important to take care of
your body because you need to behealthy, you need to live a long
time to care for your child. Soit's important to try to get
some sleep, if your child willallow it, you know, eating
healthy, you know, not ignoringwarning signs, making doctor's
appointments, keeping up withyour physicals. If you can't
(02:28):
take care of yourself, you can'ttake care of someone else.
Scott Light (02:32):
Yeah, yeah, we've heard that a lot from people who
have come to our podcastepisodes here. Jess to you, you
were talking about coping andcalming skills, let me get you
to expound on that if you would,for our listeners.
Jessica Waizmann (02:45):
Sure. We work on this a lot with the
individuals we serve, but itreally extends beyond that to
the guardians and caretakers ofthe individuals we serve. To our
staff, this was something weweren't ever taught growing up,
that I think is really relevantto all people, but especially
(03:05):
people that are in a caregiverrole. You know, being aware of
how we're feeling, and then alsohow that feels in your body.
Just kind of normalizing thatand being able to be aware, you
know, when I am sad, this is howit feels, I feel like I have a
headache. Just being aware ofthat. And there can be, kind of,
(03:28):
multiple feelings and multiplefeelings in your body, depending
on what you're experiencing. Andkind of what, you know, the
other participants havereferenced, just finding those
self-care routines as well. Whatmakes you feel better, right?
And there's a laundry list ofexamples. And I don't think we
(03:49):
need to go through them. But Ido think that having several in
your repertoire, and being ableto lean into even five or 10
different things that you know,kind of help you feel healthy
and connected to others, andcalm and comfortable is really,
really important.
Scott Light (04:10):
I love the diversity of answers all three
of you are providing right outof the gate. And Lisa that
brings me to yours, nurturingand taking a risk. Boy, explain
that one. That's really good.
Lisa Comes (04:23):
Well, actually, Jessica just gave me a great
segue when she talked aboutmaking you feel connected with
others. So, when I think ofthings, you know, the most
important thing for myself andmy son and for us to thrive in
our life is to be connected tomultiple people. And that takes
(04:44):
work and it takesintentionality. It has ever
since he was little. I mean wewere blessed with a big family
he had sisters and that helpsright off the bat because your
circle is bigger. But it's scaryand that comes, that's where the
risk is. There's a risk when youhave a person with a significant
disability to reach out topeople outside of your immediate
family and for, you know whetherit's you know, a service in the
(05:07):
community or a paid support orfor friendship or a ride or
because you're sad, you know,that's a risk. And it's even
more of a risk when your childhas a disability, because you
want them to have people. So I,you know, I am all about
connection, and that that's whatkeeps me going. I mean, I'm not
so good at making medicalappointments for myself, and
(05:30):
it's something I really work on,and I'm so glad there's people
to remind me of that part. Butwhat really gets me up every
morning is knowing that I havepeople in my life and that my
son has people in his life thatif something happens to either
one of us, we're going to beokay. And that's what, you know,
I love it. I mean, and that's tome, the biggest caregiver peace
(05:50):
of mind that I have. And sowe'll talk a little bit but as
I've worked in the field, I'veworked with little teeny 0, 1,
2-year-old kids, and I've workedwith aging folks, you know, and
I see the people who make thechoices to really put folks in a
community setting and then Ihave an opportunity to try and
(06:13):
make connections with all kindsof people. And those are the
people that continue to thriveand make it so,
Scott Light (06:18):
We all need our tribe.
Lisa Comes (06:19):
We need our people.
I said people need people.
That's a song right?
Scott Light (06:23):
People need people, yes!
Lisa Comes (06:25):
Barbra Streisand, right?
Scott Light (06:27):
Well, you know what, you mentioned your son.
Let's talk about John Ross alittle bit. Tell us more about
him. And then also tell usabout, is it Prader-Willi
Julie Callahan (06:36):
Yeah, yeah. So John Ross is 25, I think you
syndrome?
said that. And he is stillliving at home with me right
now. Because even though I've,you know, tried really hard to
get in the community, I haven'tsucceeded in allowing him to
leave the house, right. But hisdisability is pretty unique in
the fact that it is a Chromosome15 abnormality that he was born
(07:00):
with. And the general symptomsthat, you know, create problems
for him, are around a voracioushunger, which I hate that word
'voracious hunger,' it justmeans he's always starving. So
if he's around food, he'sthinking about how, "I better
eat, I may never eat again." Andthat's a really interesting
(07:21):
disability to have when you havea mom, that 1) is a foodie. And
2) believes that you need lotsof people in your life, because
people come with food. It's, youcan't keep him in a lockdown
situation all the time if youwant him to experience life. And
that's a real struggle forpeople with Prader-Willi
(07:42):
syndrome. So I do spend a lot ofintentional time trying to
figure out the places and thepeople that can be part of his
life, and still keep him safeand healthy and have fun. But
yeah, he is working virtuallyfrom home as, actually, a
Medicaid biller. He had thewonderful opportunity to do a
(08:02):
post secondary school, he has alot of good academic skills. But
he also you know, is obese, andhas health problems due to his
overweight. And he also drives acar. So he's kind of all over
the place, iterally. And so thethe risk thing, mixing risk with
responsibility and a good lifeand safety is really a big area
(08:24):
that I spend a lot of time with.
And it gives me a lot of joy forhim. and it gives me a lot of
headaches because I kind of givehim a little too much latitude
sometimes maybe. So yeah, that'skind of my thing.
Scott Light (08:39):
Well, we appreciate you sharing your personal story
and your lived experience there.
And, Julie, let me come to youand ask you, in a similar sense,
if you would tell us aboutJackson because Jackson has been
coming here to the Boundlesscampus. Do I have this right,
since he was five?
Julie Callahan (08:55):
That's correct.
So he's 19 now,he's extremely charismatic and
Scott Light (08:56):
Tell us about Jackson.
Wow. And Jess you know Jackson?
handsome and athletic. But withthat said, he's also nonverbal.
He's profoundly autistic. Levelthree is what they call it now.
He engages in high intensityself injury and aggression. And
he's been a lot to manage andBoundless has been there with us
(09:20):
since he was five. We've been inand out of hospitals a lot
throughout his life to help tryto manage those. He also has
several medical conditions,including epilepsy. He has some
pretty bad reactions tomedications, so it's really hard
to medicate him. And some ofthose medications have caused
(09:43):
hospitalizations. He was in ahospital for up to two years
while we were looking forsomeplace for him to live that
would be able to support hishigh intensity needs and his
medical conditions and luckilywe ended up back here in
Columbus and Boundless is takingcare of him and his housing. And
(10:07):
they're supporting him, both inschool and in his daily living
Jessica Waizmann (10:15):
Oh, yeah, since he was five.
Scott Light (10:17):
Wow. Talk about that relationship a little bit.
Jessica Waizmann (10:20):
Sure. Well, I mean, I worked directly with
him, you know, intermittentlyover the years, helped to
support a home base program whenhe was still living at home with
his family. Yeah, and actuallyhave subbed and helped out in
his current home. Yeah, he'sreally just a great guy. And I'm
(10:42):
happy to know that he's grownand in a really good, safe home.
Scott Light (10:48):
Let's come back to a couple of themes here that
we're going to discuss when itcomes to caregivers. And I'll go
around the horn, whoever wantsto jump in here, but super broad
question, what challenges docaregivers face when it comes to
their own self care?
Julie Callahan (11:05):
I can start with that. I think caregivers of
those with special needs spendsignificantly more time taking
care of their child than thatof, you know, an average parent.
And so I think the challengesare the amount of time needed to
support your child you havetherapies, you have doctor's
(11:25):
appointments, you have school,you have paperwork, you have
agencies you're meeting with. Iusually call myself the CEO of
Jackson, because it's a lot tomanage and organize. But you
don't have a lot of naturalsupports, you know, you don't
really fit in with your friendsand family because they don't
really understand what's goingon so you become very isolated.
(11:46):
You don't, you know, you can'tjust go out and do anything
because nobody can watch yourchild, right? And you don't,
it's hard to balance your otherchildren, your relationships,
your friendships, because you'reneeded to take care of your
child. So I think that is a bigchallenge.
I was jumping in right therewith isolation, you know, again,
(12:08):
going back to the relationshipidea, I think the biggest, you
know, pitfall is when you dofeel alone. And it's real. I
mean, even for, you know, I makeit sound like I do a lot of
that, but there's still a lot oftime where you feel very
unheard, and alone in your, youknow in your life, you know, and
(12:33):
your struggles, I guess. Sothat's when I know I need to do
some of the great techniquesthat you guys brought up, you
know, is number one, you know,just kind of like spending some
time and eating healthy andtaking care of myself physically
and sleeping, and those kinds ofthings. Because there are so
many people in my life. And Ijust sometimes get into that
really isolated, where I justdon't feel like they really get
(12:56):
what's going on. So that thatdefinitely hits home for me too.
Jessica Waizmann (13:00):
I think that's where connecting with services,
having service providers thatare able to assist can really
play a role. I think something Isee a lot as well, both with our
staff and the caretakers that wesupport, caregivers that we
support. Making sure to taketime to play to spend time with
(13:21):
that individual and enjoy yourtime together. Outside of
demands outside of any kind ofstructure, just taking that time
every day to be able to connectand kind of enjoy each other's
company as much as possible. Trynot to over commit to things
especially I mean, this isabsolutely relevant to staff too
(13:43):
right? Not kind of overworking,making sure to have that work
life balance. Spending yourenergy wisely, you know, burnout
has a lot of effects and beingable to kind of manage your
energy and again, just kind ofnot over committing can be
(14:04):
really beneficial in terms ofjust keeping those reserves.
Scott Light (14:09):
Jess, you really teed up the next thing. I'd like
for again for all three of youto jump in on and that is now
that we have a little bit ofhindsight, not that, you know, a
worldwide pandemic is over. Butlooking back, my goodness, what
did we learn from COVID-19 andall this? And what wrenches did
(14:29):
COVID-19 throw into this mix ofcaregiving for kids and adults
with special needs?
Lisa Comes (14:37):
My son and I actually thrived during
COVID-19. And I don't, and I'veheard that from other families
too, because there weren't asmany things that you were
missing out on or that you coulddo or that you could like. It
was a really strange idea. Itcertainly brought out the
importance of thoserelationships and the people
that you just couldn't not bewith like, who were your real
(14:59):
people? And who really was thereto help you? But it's almost,
you know, maybe I got FOMO? Idon't know. But I mean, it was
like, it was it was kind of arelief. And maybe also, you
know, just because I work in,you know, a pretty taxing job.
And it was new for me at thetime. But there was that relief
that might, the expectationswere lowered. So, you know, it
(15:23):
was a good thing. And it kind ofreminded me that maybe I was
probably doing too much and overcommitting right, and feeling
too worried about what I wasmissing out on, instead of just
kind of enjoying and being andfocusing on the most important
Scott Light (15:35):
You know, what, Lisa, my wife has said, again,
people.
now that we can look back, but Ican remember her saying this in
the moment, too. During COVID,she said, and again, if with
perspective, that she liked thatlife was slower and that she was
taking in moments better. Toyour point, she was. And she
(15:58):
just felt like...
Lisa Comes (15:58):
It's kind of like when you have a snow day. And
you just can't do anything buthave hot chocolate and go
sledding.
Scott Light (16:03):
That's a great comparison.
Lisa Comes (16:07):
for me being kind of over the top all the time, and
that it really did force, someslowdowns, so.
Julie Callahan (16:18):
I'm going to swing the pendulum the other
way,
Lisa Comes (16:20):
Alright,
Julie Callahan (16:22):
I've found that when, during the height of the
pandemic, you know, serviceswere shut down. So people who
had some supports lost thosesupports. So then you had that
caretaker burnout, becauseyou're the only one there and
you're experiencing things andthere was nobody there to help,
you know, tap out with. And evenon the medical side, you know,
(16:46):
your speech and OTs were shutdown, your diagnostic
appointments were shut down. Sothere's such a backlog of people
on these long wait lists thathave been even trying to get
diagnosis or, you know, supportsin a medical setting, that have
like been waiting one or twoyears to even get supports and
(17:06):
services or a diagnosis even so,I think that was the main effect
and just the lack of supportsand getting out and that lack of
routine, so many of the kidsneed. So, you know, they're used
to going to school, they're usedto going to different things.
And then when that didn'thappen, you know, those
(17:27):
behaviors raise up, you don'thave anybody there to support.
So I see a lot of parents thatwere in crisis during that time.
Scott Light (17:36):
And parents had to become educators like at the
flip of a switch. And I knowthat if I had to do that,
thankfully, my kids were, youknow, beyond high school and in
college at that time, but itwould have been horrible. I'm
not an educator, I am not atrained educator, and could not
have become one.
Julie Callahan (17:53):
Yes. So for even for me, for my typical children.
I'm like, I don't know, commoncore math. I don't know. I don't
want to know it, was like theanswer's four, I don't know how
you got that.
Scott Light (18:02):
Exactly, exactly.
Yeah,
Jessica Waizmann (18:04):
We saw families struggle. And we
actually never discontinued ourin-home services and kind of
bulked it up during that timebecause a lot of our individuals
who were not in school reallyhad an increased need for
in-home support. But thatisolation piece, that lack of
community inclusion andconnection during that time was
(18:28):
difficult for a lot of ourfamilies, that we serve, but
also for our staff. And I haveseen with some of our staff that
kind of taking a step back andreprioritizing and prioritizing
their families over work, whichI do think ultimately has had a
positive impact on some of myco-workers. And you know, just
(18:50):
being able to kind of reframethings and approach it from a
different perspective.
Scott Light (18:56):
Speaking of work, I'd like to talk to all three of
you about what you do on a dailybasis, not just what you're
doing with your respectivefamilies, but also every single
day and just with that, tell ourlisteners more about ABA
services here at Boundless
Jessica Waizmann (19:11):
Sure. So I oversee our community based ABA
services in central region forBoundless and we mostly work in
individuals homes, providingopportunities to build and
develop a variety of skills thatmight be relevant to those
individuals, as well as workingto reduce any kind of
(19:32):
challenging behavior that mightbe occurring. Working with
parents and families, as well ona kind of assisting and
facilitating all of that aswell. So we have a really large
team of behavior specialists andanalysts. And they oversee
services we have behaviortechnicians that are providing
(19:54):
that one-on-one support. We alsopartner with other community
based settings, so daycarecenters, adult day programs,
schools. So it's not exclusivelyhome base, but predominantly.
And I just really think thatworking in community settings is
so relevant, that generalizationof skills is not as much of a
(20:17):
struggle, they're working onthose skills in the context that
they're going to be using them.
Right, especially when we whenwe do in-homework.
Scott Light (20:25):
Julie, you've mentioned a parent to multiple
children here, but also yourwork as a parent peer support
specialist at NationwideChildren's, tell us about that
work.
Julie Callahan (20:35):
So the good thing that's come out of me
being a caretaker for my son,Jackson is learning all the
services in the community thatare available, the educational
systems and how to work throughthings, how to support him
behaviorally. So an opportunitycame open at Nationwide
(21:00):
Children's for a parent peersupport specialist, and that is
certified through the State ofOhio. And we basically support
parents who have children whoare going through mental health
crisis, if you know, andreminding them to care for
themselves, and how to care fortheir children. And whether
that's, you know, advocating orlooking for resources,
(21:23):
connecting them with groups andother families that are
experiencing the same thing sothat they know that they're not
alone.
Scott Light (21:32):
And Lisa, you can also talk about this work in a
in a 360 way with what you'vementioned, in terms of your
family with John Ross, but alsoyour role at OACB. Tell us about
that.
Julie Callahan (21:43):
Yeah, I actually, you know, I worked in
the disability field for sevenyears, or 10 years, actually,
before my, John Ross was evenborn. And I just kind of fell in
to it. I was a speech andhearing therapist working in a
school for the county board ofDD with folks with pretty
profound disabilities. And hewas my third child, and you use
(22:04):
that word 360. And I was like, Iremember when he was born. And I
was like, Yeah, I can't likewhen I got the diagnosis, I was
like, I cannot work this andlive this, I am not, you know,
and I took seven years off andjust focused on him and family
and had another child. So I hadfour all together. But then when
it was time to get back and hewas going to school, I went back
(22:26):
to the County Board, and Iworked as an SSA, on that
service and supportadministrator for Lucas County
Board of DD in both children,adults and eligibility. And
eventually, actually rightbefore the pandemic, as we were
talking, that was one of the bigthings that probably affected me
in the pandemic was that I hadaccepted a job with the Ohio
Association of County Boards tosupport service and support
(22:50):
advisors across the state, likethree months before the
pandemic, so I was supposed tobe traveling all over the state
meeting people doingprofessional development, and
then all of a sudden, I wascompletely 100%, virtual, doing
a lot more kind of advocacy andemergency work and, you know,
advocating for everything wecould possibly do to get people
(23:12):
services that they needed. So,I've had that last four years,
it'll be four years soon, whereI'm, you know, kind of, OACB
only I'm the only personthere's, about 2300 service and
support administrators acrossour 88 counties. And, you know,
they are, we're experiencing allthe things we've experienced
(23:34):
with DSPs right now, where, youknow, nobody goes to college to
be a service and supportadministrator. And nobody goes
to be a case manager inchildren's services, or, you
know, and so we get people whonever thought they would do
this, and now it's a job. Andthere's a lot of training and
understanding and rules. God,there's so many rules. And many
(24:01):
of them aren't parents, theirparents to anybody, many of them
are still kids. And so, youknow, my oldest is 30. And she's
seven years older than a lot ofSSA's. So, there's some great
people in the county coards, andI really, absolutely enjoy
supporting the county boards andall that they do. But, you know,
(24:22):
it's a tough, complicated systemthat we all work in. And
actually, we've been talkingabout self-care with SSA's for
the past two years, three yearsbecause the burnout is terrible.
We have turnover, you know,close to 25-30% right now. So,
you know, it's all those thingstaking care of each other. And
(24:43):
I'm doing the same thing withthem. I'm trying to connect them
with each other you know, all ofa sudden thankfully with the
virtual options, we're able toget SSA's is to realize that you
know Marion County. I'm justthrowing out Marion, is not,
that's not the whole world andyou know and trying to learn
that things could be donedifferently might be done
differently. And maybe there's abetter way, and to learn from
(25:05):
eachother and, you know, promotea little better consistency,
because we, we all struggle withthat 88 county boards, deciding
how to implement things is, is abig task. And they work hard at
it. And some people do reallygood. But we need, we need to
keep working at trying to getthat consistent message and
(25:28):
giving families and peopleserved the best services
available. So I love my job. Andit has brought some great
opportunities to my son, becauseof knowing this system and
understanding it, I'm veryblessed. But it's also brought
to my other children, being inthe disability field, it's one
of my favorite things aboutbeing a mom, is that I have
(25:49):
three daughters, along with JohnRoss, and every one of them have
decided to do something in thehuman services field. And you
know, and some of them wanted tohave nothing to do with people
with disabilities, which is notvery kind, but you know... no, I
mean, they obviously but anurse, a doctor, and now a
counselor, you know, so thoseare kind,
Scott Light (26:08):
They're serving, for sure.
Lisa Comes (26:10):
Yeah! And they love it. And they affect everybody
around them when they talkabout, you know, being a
sibling. And so, that's such ablessing of what we have done as
family members, you know, tobring up people and give people
a different perspective. So I'mreally proud. Good job, Julie.
Jessica Waizmann (26:28):
Yeah, and I love that you brought up your
children kind of going into thisfield, because of their personal
experience, we see that. I mean,I make the assumption that all
of us that are going into thehuman services field, have
something that brought us here,and that makes us really
passionate and compassionate andgood at our jobs, right? But I
(26:50):
think because we all have thosepersonal things that bring us
here, being really compassionateand supportive with each other
is so important. I know, youknow, we've been talking a lot
about self care, but also justcaring for each other and being,
you know, supportive of ourco-workers. And I think that
that's such a critical piecethat maybe could be missed,
(27:11):
right? But it is important forus, I don't know, just to be in
a healthy work environment andbe able to take care of each
other too.
Julie Callahan (27:22):
It's lot of stress, it's a lot of pressure
to figure everything out, keepyour kids safe, keep them
healthy, help them to live asindependently as they are able
to be that's, you know, a lot ofpressure and a lot of need. And
a lot of resources are neededand,
Scott Light (27:41):
And those pressures are real. I looked at some
numbers from the Centers forDisease Control. So these are
national numbers, but they'restill worth absolutely looking
at. Caregivers often pay a highprice for for their labors of
love. Let me run a few numbersby you. 35% of caregivers have
(28:01):
difficulty finding time forthemselves. 29% experienced
emotional and physical stressfrom their various roles. 54%
said their health has gottenworse due to their caregiving
responsibilities, and 29% havedifficulty balancing their
family and workresponsibilities. Couple of
(28:23):
questions and again, just jumpin. Do you think some of these
numbers could be under reported?
And then I'm just wondering aswell? Are there some surprises
in those numbers to to any ofyou?
Julie Callahan (28:34):
I definitely think those aren't probably
totally accurate. Because a lotof people will just say, "We're
fine, I'm fine." I've also heardanother statistic that a special
needs parent experiences thesame PTSD with the chronic
stress comparable to that of acombat soldier. And you know,
(28:54):
he's constantly on edge, you'revigilant of your surroundings,
you have to over plan for everypossibility. It's exhausting
mentally. So that's why you havethat caregiver burnout.
Jessica Waizmann (29:06):
From both the caregivers of the individuals we
serve and our staff. And, and Ithink maybe even more broadly, I
think people in general don'tnecessarily take the time to
really engage in healthyself-care, you know, taking that
time for themselves, maybe evenkind of outside of a caregiver
(29:27):
role. I just don't think it'ssomething that we all have a lot
of practice doing. So yeah, Idefinitely think those numbers
are low.
Julie Callahan (29:36):
When I was looking at this and thinking
about talking about it, I waslike, who is a caregiver? You
know, what, where did they getthose numbers? Because who isn't
a caregiver? And, you know, it'sso hard to measure, you know,
within the disability world, youknow, what, who's the most
challenging person to care for,and it really is more about the
self-care, right? It's moreabout how are you? How do you
(29:57):
deal with stress and you know, Ihave I know people who, you
know, they choose caregiving,but they don't have anybody
necessarily to caregive, butthey're just as stressed and
mental health, you know what Imean being issues for them?
Because that's something iswired in them to be that, you
know, that's what they do theyseek it out. And I do, I just
think there's that there'ssomething about, I mean, there's
(30:18):
no doubt when it's your childor, you know, a loved one, that
it's going to be more intense.
So I'm assuming those are wherethe numbers come from, but very
underreported. I mean, there isno doubt that, you know, I don't
think many of us even realize,you know, the health issues. I
remember I was in some studyduring the, it was probably this
one, during the pandemic, wherethey were asking questions about
(30:39):
all that, and you know, how youwere feeling in isolation and
all that. And I didn't hadn'thadn't ever even thought about
my physical problems that were,that could have been attributed
to some of the stuff until I'dbeen doing it for like, a year.
And I was like, wow. You know,like, so, there's so it's so
hard to self assess that.
Scott Light (30:59):
Yeah. Well, and researchers and doctors will say
the data is unequivocal nowabout stress, and that there are
two things, that it compoundsover the years, and that it's it
can be invisible, right? If we,if we're not if we're not paying
attention to it. Let me ask thisas we start to wrap our
conversation here. And as welook at the calendar, we're in
(31:21):
November. It's a great timeheading into the holidays. But
yes, it's also a stressful time.
Thanksgiving tables can be abounty of food, and stress,
let's just be honest. As we'reheading into the holidays, how
do each of you take just aminute maybe, or minutes,
plural, to take a little timeright now to decompress?
Jessica Waizmann (31:45):
Really allocating energy to the things
that need to be addressed. Notover committing to social
activities, to family demands,things like that. But also
taking that time off work,making sure to, you know, have
that work life balance duringthese times, because your
(32:06):
personal life can be a lot moredemanding during the holidays,
and so being able to have thatbalance around work, you know,
is even more important.
Julie Callahan (32:15):
I'm gonna go with endorphins, whatever I can
do to get them. That's kind ofwhat I do. I like the quick
fixes. You know what you guyscan tell I'm a pretty
spontaneous person. Recently, myson and I were hanging out, and
it was Halloween time, and I wasI don't know why I hadn't done
anything very exciting all day,right? Just did the normal
stuff. And I was like, "Come on,tell me something we can go do
(32:38):
that will just be fun." And hewas like, "It's a mystery trip."
So he drove me. And we wentthrough a haunted carwash. OMG.
Two minutes of screaming gleefulendorphins, and I hate haunts,
but it was so, I talked aboutit, we talked about it for days
(32:58):
afterwards, I was like, "Oh, myGod tell them we went to the..."
you know, and he's a haunt guy,like, that's what he does. And
he knows I don't like it. So,you know, anyway, I mean, you
know, that was a fun way. Youknow, obviously, I'm a big
nature person walking is my iseverything I need to walk I need
silence or nature sounds, youknow, when I'm walking. And then
(33:18):
recently, it's pickleball.
Pickleball releases all theendorphins for me, but it's not
minutes, it's hours. So, youknow, I am blessed that there is
time and my son's older and Ihave some ways to get to
pickleball. But that has beenreally a good outlet for me
lately. So exercise would be myother kind of generic word
because I really feel good afterit. It really gives you that
(33:40):
oomph.
Scott Light (33:42):
There you go.
Julie?
Julie Callahan (33:44):
I think setting boundaries and being able to say
no, and don't overextendyourself. I haven't learned
these lessons yet, but I'mworking on it. And realizing
that, you know, your holiday isgonna look different than what
people expect. And you know,that's okay. You know, my kids
don't like turkey. So maybe wehave pizza, I don't know. But,
(34:07):
you know, setting up aenvironment that you feel
comfortable in what your childfeels comfortable in. And then,
you know, taking time foryourself like, you know, Mindful
Minutes is what I call them.
Giving yourself like, twominutes to like, just meditate
or, you know, do somethingcreative that you enjoy, or you
know, listen to a podcast orread a book. I don't have a lot
(34:31):
of time to read but I'm in mycar a lot. So listening, you
know, to a podcast or listeningto songs I like, whatever it is,
just take those moments when youcan to steal them away because
all your other time is spentcaring for others, but I think
boundaries is the main one andyou know, developing
(34:53):
relationships with people whounderstand and creating your
environment creating yourvillage as I said.
Your tribe together.
Scott Light (35:05):
Yeah, this is such an important topic especially
again right now as we're headinginto the holidays. Thank you all
for coming in and joining thisepisode.
Jessica Waizmann (35:14):
Thank you.
Lisa Comes (35:14):
Thank you
Julie Callahan (35:15):
Thanks
Scott Light (35:16):
To our listeners you can be part of episodes to
come you can always email usyour questions or comments at
podcast@iamboundless.org. Thisis the Wellbeing podcast brought
to you by Boundless
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