December 17, 2019 • 34 mins
As a caregiver, you are often focused on the care of others. But what about caring for yourself? In this episode, join host Allycia Wolff as she talks with the Thayer family about self-care. Brian and Jen Thayer are parents to Roa and Gunner, one of whom has special needs. In this episode, they talk about making time for yourself, communication, and finding the things that make you whole.
Resources mentioned in this episode
Dad's Support Group meets the first Saturday of the month at 5pm at Carbonie's Pizza in White Bear Lake. Contact Brian Thayer at 651.604.2754 for more information.
About Focus on the Future
You can find more information about Focus on the Future at arcminnesota.org/podcast. If Episode 6 inspired a question for an Arc Advocate, call The Arc Minnesota at 833.450.1494.
Focus on the Future is a podcast for caregivers and families supporting people with disabilities. In each episode, a conversation about the journey of discovering our best life and how to achieve it. While exploring legal, financial, and quality of life structures, Focus on the Future aims to get back to what matters most: living a fulfilling and meaningful life that is defined by each individual person.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Allycia Wolff (00:03):
Welcome to Focus on the Future, a future planning
podcast for caregivers andfamilies, supporting people with
disabilities.
Focus on the Future is a podcastof The Arc Minnesota, a
nonprofit organizationadvocating for folks with
intellectual and developmentaldisabilities.
My name is Allycia Wolff and I'man advocate here with The Arc
Minnesota and your host forFocus on the Future.
(00:24):
In this week's episode, we aregoing to be speaking with Brian
and Jen Thayer from White BearLake, Minnesota about their
experience in caring for theirson, Roa, and how amongst all of
the care that they're providing,they're able to care for
themselves.
Thanks for joining us.
Music (00:41):
[music playing]
Allycia Wolff (00:47):
To start this week's podcast, I want to take
one moment for everybody who islistening to take count of
themselves, where they are, andhow they're feeling.
So join me for just one minuteas we do a little meditation
practice.
We're going to start bybreathing and when you're ready,
(01:09):
take one big inhale and one slowexhale.
Look around and take count ofwhere you are.
What are you doing in thismoment?
(01:30):
Actually physically look around.
What's the weather like?
What does it smell like?
How do you feel?
Consider where your body is inthis moment and what part of you
is touching the ground or theearth.
(01:52):
Are you sitting or standing?
And then little by little, we'regoing to work from wherever
we're touching the ground up tothe top of our body.
So you may wiggle your toes,extend your ankles, relax your
(02:14):
legs, sit up just a little bitstraighter and lengthen your
spine, open and close your jaw.
Relax any tension out of yourforehead.
And one more time.
Inhale, fill up all of the partsof your lungs and exhale slowly.
(02:44):
Let it all out.
Taking just a few moments everyday to be aware of how you feel
can give you space to processand focus.
A lot of the things that I'velearned about meditation really
(03:07):
highlight that meditation itselfis the practice of focusing.
And if you can make yourselffocus in a meditation, it
enhances the rest of your lifebecause you're able to focus in
times when you're stressed orfeeling overwhelmed or even in
the times that you're happy.
I think we've all had momentswhere we can be pretty
(03:30):
overwhelmed.
And so later on in your day orin any moment moving forward,
remember that you can breatheand take count of where you are
and what your body feels like tofeel more grounded in whatever
space you're taking up.
Moving forward, today I sat downand talked with Jen and Brian
(03:53):
Thayer about caregiving and howcaring for their son Roa has
impacted their life and theirrelationship and how they see
themselves and how they copewith being a caregiver.
They had a lot of reallywonderful things to note.
I know Jen and Brian Thayerpersonally and professionally in
my life and it was really greatto sit down and chat with them.
(04:16):
So here is their interview.
Welcome, Thayers.
Thank you so much for being heretoday.
Would you mind introducingyourselves?
Brian Thayer (04:29):
Yeah, thanks for having us here.
My name is Brian Thayer.
Jen Thayer (04:34):
And I'm Jen Thayer.
Allycia Wolff (04:36):
Great, thanks.
And you guys live in White BearLake still?
Jen Thayer (04:40):
Correct.
Allycia Wolff (04:41):
Yeah.
Tell me about your kiddo.
Jen Thayer (04:43):
So we have two boys.
Our oldest is 11 years old andhas quadra spastic cerebral
palsy.
And then we have one other sonand he is nine and he's just
kind of your typical kid.
Allycia Wolff (04:59):
Great.
So we are going to chat today alittle bit about what it means
to be a caregiver and how youcan take care of yourself
amongst all of that.
And first I would love to hearBrian about the group that
you've recently started.
You're facilitating kind of likea dad's group, right?
Brian Thayer (05:18):
Yeah, that's something we've, we've had two
meetings now.
We're meeting once a month.
And it's just something thatI've been thinking about
probably for almost a year,where I noticed that there was a
lot of groups and a lot ofFacebook pages and all that
stuff that are really focusedtowards the moms or the female
(05:38):
caregivers.
And I would meet with a coupleof other dads like maybe once or
twice a year and just got a lotout of that.
And I thought, well, it'd begreat if we could expand this to
people outside of my circle, youknow, so other dads could come
or other male caregivers couldjust come and, and you know, we
(06:01):
talk about work, we talk aboutsports, we talk about, uh, our
kids' bowels movements.
[laughs] We talk about feedingthem, we talk about therapies,
just kinda anything that comesup.
And it's really freeing to beable to talk to people who
understand that kind of stuff.
Instead of..
I get a dad who only has typicalkids, you can't talk to them
(06:23):
about some of the things you runinto with a child with special
needs cause they just, one theydon't understand.
And two, you get, you know, youget sympathy or you get pity.
You don't get, God, yeah, I knowthat happened to me yesterday
and here's my story.
And to be able to laugh aboutthat kind of stuff because it
is, it's part of life and yougotta laugh about it.
(06:43):
So...
Allycia Wolff (06:45):
And Jen, how do you feel that you connect with
different caregivers?
Jen Thayer (06:52):
Um, you know, social media is kind of the biggest
outlet that we have.
And when Roa was smaller, wetried to do some mom meetups and
things like that, but life isbusy for people and so many
people do balance, family andcareer and you know, in some
cases there's divorce and theydon't have their child all the
(07:14):
time.
And there's so many differentthings that just make meeting up
in a group on Facebook just theeasiest way.
Allycia Wolff (07:25):
And what about hiring caregivers?
Tell me what that experience hasbeen like to hire somebody that
you don't know and welcome theminto your home to support Roa.
Jen Thayer (07:36):
You know, honestly as parents, when we first
started hiring PCA's to come in,the personal caregivers, to help
us care for Roa, it was nervewracking because we knew how he
had to hold his head to swallowand we knew how he had to fall
asleep at night in order to, youknow, not have reflux happen or
(07:58):
all of those different thingsthat we think about, they
wouldn't think about.
And so, it's exhausting havingto train someone to be another
you.
Allycia Wolff (08:07):
Absolutely.
How do you continue to balancethat in your own life?
Because it is so exhausting tobring people in.
You know, because if you coulddo it all you would, right?
I feel like, like I know youguys generally enough to know
that you would, but how do youbalance that?
Brian Thayer (08:28):
It's really difficult from our standpoint
when we interview people to be aPCA, they really, we really have
to be comfortable with them.
And we've had a few in the pastso we just weren't comfortable
with and our son Roa didn't likethem either.
You know he can't tell us that,but he can communicate it to us.
(08:51):
And in the end it didn't workout very well.
So the first step is, is whenyou're meeting with somebody, do
ya just feel absolutelycomfortable with them and feel
like you can trust them withyour child who needs everything
from you.
Allycia Wolff (09:07):
Making sure that your like vibes align.
It sounds, it sounds kind ofhippie, but it's, I think that,
that there's a lot of warrant tothat.
Brian Thayer (09:15):
Yeah.
And then setting up some veryclear boundaries and very clear
expectations.
Allycia Wolff (09:23):
How do you do that?
Jen Thayer (09:26):
You know, I really, one of the things that we live
by in our family is humor andjust being straightforward and
honest, you know.
We are big...um, communicationis where it's at.
And so I always like to touchbase.
I always make sure they feelcomfortable coming to me with
anything, with any issue, withany question that they have and
(09:49):
kind of setting that up rightaway that we are just, you are
going to be an extension of ourfamily.
You're in here with us and justfeel free to talk to us in any,
you know, with anything that youhave.
And like Brian said, youdo....When we first talk, we
talk about the guidelines, wemake sure, you know, a couple of
weeks to a few months into theirhelp, we make sure that we say,
(10:14):
is there anything that you'requestioning.
I mean, how was the bathroomgoing?
How was, you know, do you feelcomfortable driving a handicap
accessible van?
All of those things cause theyall come into play with
caregiving.
Allycia Wolff (10:29):
Absolutely.
Yeah.
It's a really big piece of yourlife to, just to like, open up
your home and that level ofprivacy to different people and
have, you know, like staffturnover is a reality for
everybody.
How do you make sure that you asa family have private time, the
(10:49):
four of you and then as acouple?
Brian Thayer (10:54):
I think as a family now when we have a PCA,
it's usually for the summer, forparts of the day.
And then throughout the schoolyear as we can get one so we can
have time together, the two ofus, Jen and I.
Other than that, we don'treally, the PCA isn't really
around if both Jen and I arearound.
So from a family, private time,we have a lot of private time.
(11:19):
Our kids are not involved insports or a lot of extra school
activities except for therapyand church.
So we have a lot of family timetogether, which is good.
And then Jen and I, we get...
You know, we went out for lunchbefore we came here and I can't
(11:40):
remember the last time weprobably got to go out together.
I know it's been a while, butyou gotta find those small
moments during the course of theday or the week to do that stuff
because our experience has been,you're not going to get that
weekend away or you don't get togo someplace overnight very
(12:02):
often without the kids just,because of the level of
caregiving.
So I would say just finding thesmall moments is huge.
Jen Thayer (12:12):
Yeah.
I think too with that on apositive note about it, like
when you do have those moments,you really try and make the most
of them, and you soak up everyminute that you can.
Another thing that has reallyhelped is we are very routine in
our family.
And just having a set scheduleand routine, you know...
(12:33):
We always try and touch base andtalk about, you know, the budget
on Saturday mornings and we talkabout, you know, our kids and
involvement in school activitiesin the evening when Brian is
home.
Yep.
And we have a whiteboard wherewe write our calendar, when
dad's gonna be gone for work orwhen the kids have something
(12:55):
special coming up.
So we try andjust...communication is huge.
And just having that expectationmet with the schedule.
Allycia Wolff (13:06):
One thing that we find is the divorce rate is
higher with families that arecaring for a child with a
disability versus families thatdon't have a child with a
disability.
So the rate is much higherbecause of the stress and the
communication that's needed inthat process.
Do you have anything that you'dlike to share to that?
Brian Thayer (13:28):
From the man, the father, the husband side of
things, is that your role in thefamily is going to be so much
different than maybe what youexperienced growing up from your
father or what you had in mindfor what being a father is going
to be.
(13:48):
I know in my mind it was goingto be hockey games and playing
out in the yard and you know,all this fun stuff, right?
And as the father to a specialneeds child, it's not that
definitely.
It's helping them go to thebathroom, it's feeding him three
(14:09):
meals a day.
It's washing him in the shower,it's picking up and carrying him
from one spot to another toanother.
It's nothing that I expected andI think that really, and that's
part of the whole dad's groupthat I wanted to start was
dealing with some of thosefeelings and some of those
thoughts that this wasn't how Iplanned my life to be.
(14:30):
And it's really, it can be areal inconvenience to people and
especially in society where theman is supposed to be the go to
work, bring home the paycheckand you know, fix things around
the house.
You're not really allowed to orsupposed to do all the intimate
things that you have to do withyour child with special needs.
(14:52):
And it can be a real, it can bea real divider in families,
especially if the husband, dad,wants to maintain that role and
the mom is over here saying, Ineed so much more from you than
that.
And how do you, how do you getto that spot where both you
understand that, and, and arewilling to give a little.
Allycia Wolff (15:15):
How do you get to that spot?
Jen Thayer (15:18):
We had some tough years.
We had some years of justexploration of our roles.
After being a career woman,being a teacher for so long, and
then staying at home, you alwaysexpect that you'll go back to
work.
Your kids will go to school andthen I would go back to
teaching.
And to have that change to beingfull time caregiver and you
(15:43):
know, spending a lot of time onthe phone, making appointments
or worrying about bills andcatching up on sleep and keeping
up with, you know, laundry andall of those things.
And I think it's just, you know,the fact that like Brian said,
Roa, you know, needing help withevery single daily task.
(16:08):
It's like having a lifetimeinfant.
It's someone who relies on youfor everything, from sitting up
to, eating and it really doestake a toll on you and just as a
couple, you feel disconnected alot, especially when Brian
(16:28):
travels for work.
And he comes home and I just, Isay I need time.
I need time away.
You need to take them.
And Brian's thinking, I justgot, I have jet lag, I need a
break.
I need some time to just catch abreath and you know, I want him
to be with the boys and caringfor Roa.
And so it took some, a lot ofdiscussion, you know, both him
(16:50):
and I have been to therapyseparately just to work on our
own feelings about having achild with needs and trying to
balance the, this is my role nowin life and this is primarily
who we are.
And there aren't very manypeople that you can talk to who
truly understand, but I can saythat I understand why divorce
(17:14):
rate is higher with all thestresses of special needs, but I
can also, you know, put thepositive spin on that.
It really does take justcommunication, and sharing with
each other what you personallyneed.
Allycia Wolff (17:27):
And in the end, seeing both of you and your
relationship, even though in thepast few years it's been like
that, a little bit of adistance.
You have developed thatcommunication style really well
with each other and it seemslike you are constantly
reevaluating it.
(17:48):
Like you never really into a, Ohyeah, we've got it.
It's easy.
Brian Thayer (17:54):
No, I think as soon as you think we got it,
it's easy.
You're going to, it's going toslip away.
We are constantly, I shouldn'tsay constantly, but we talk
about, we talk about it a lot,you know, probably more than
other couples do.
And just, you know, a couple ofyears ago, things were real bad
(18:19):
and you know, it took a lot of,took a lot of work, took a lot
of communication, took a lot oftrust and honesty to get to a
spot where we're at now, whichis, which is pretty good, I
think.
For me I'm more comfortable whenshe's not talking to me then
than it was before.
I'm like, when she wasn'ttalking to me before, I'm like,
(18:41):
Oh my God, something's wrong.
And then, and now it's justlike, okay, well we just don't
have anything to say and that'sfine.
Allycia Wolff (18:48):
Mm.
Jen Thayer (18:48):
Yeah.
Allycia Wolff (18:49):
Yeah.
How long have you been togetheras a couple?
Brian Thayer (18:55):
15 years.
2005.
2005.
Allycia Wolff (18:59):
Yeah.
That's hilarious.
Well.
Congratulations.
I want to just talk a little bitabout how your son requires
assistance to be able to go tothe bathroom and to walk and to
do a lot of like physicalactivities on his own.
And so not only caregivingrequires a lot of emotional
(19:21):
commitment from you, but it alsorequires a lot of physical
commitment.
And so how have you been able totake care of your body as well
as your mind and soul?
Jen Thayer (19:33):
That is such an important question and something
that I never really thoughtabout.
I was a special educationteacher in my past before I had
Roa and you know, I knew alittle bit of the toll that it
would take on my body fromhaving to, you know, lift and
position and help support someof my students.
(19:55):
But now knowing that it's everyday of my life having to lift
and support and move my sonmultiple times during the day,
you really do see just the wearand tear on your back and your
neck and your muscles ingeneral.
And you know, with Roathere's...
(20:16):
there's sleep issues.
And so we never have a fullnight's sleep any of us in our
home.
So we really, exercise has beenkey in our lives.
It ebbs and flows just like witheveryone.
But just, you know, for me it'sbeen, I walk every day and, you
(20:38):
know, pilates and yoga and someweight training and, Brian, I'll
let you speak for yourself, butjust really making sure
chiropractic care is essentialin our family's life.
But it does, it really takes atoll on your body and it's
another reason why it's soimportant to get that support
(21:00):
when you can.
And I think there's a prideissue sometimes when it comes
to, do we need a lift for thebathroom?
Do you need a toilet chair?
Do you, and you want to say no,that you can handle it, but
sometimes it's okay to just sayyes, it's time to look at a
lift.
And that's, we're in the processright now of installing a track
(21:22):
system to help get Roa to thebathroom and into the shower,
just to kind of save our bodiesa little bit.
Brian Thayer (21:31):
Yeah, I agree with everything you just said.
Uh, working out or gettingexercise is important.
Uh, both physically andmentally.
Um, stretching, eating right formyself, if I eat too much junk,
that really affects everythingin my life in a negative way.
(21:53):
Also, I go to therapy.
I have been for two years nowand, that's not, I mean, I'm not
going to say it's not somethingI thought I'd ever do, but I am
surprised at how much it'sactually helped me.
I was going like every week tobegin with.
Now it's every other week.
(22:13):
But I think just you gotta takecare of yourself and you can't
be, as a guy I should say, youcan't be embarrassed to do that
kind of stuff.
It's perfectly normal and yougotta deal with the stuff or it
just builds up and, and it isreally negative for everybody.
Allycia Wolff (22:33):
Yeah, absolutely.
You said, you said earlier, Jen,that you have to keep your pride
in check, especially with likeinstalling the hoyers and stuff
because you're gonna want to doall that.
You want to do everything foryour son.
Can you tell me more about likehow you waffle with that?
Jen Thayer (22:55):
Yeah.
And you know, there's also, um,depending on the disability with
Roa and Cerebral Palsy, um, youknow, when Roa was first
diagnosed, it was not a veryuplifting, um, discussion that
we had with the neurologist.
You know, we, we were told thathe may not, we probably would
push him in a chair.
(23:16):
He may not eat by mouth,probably would never hold a
pencil, may been tube fed, willmost likely never use a toilet.
We were told all the reallynegative things.
And so Roa growing like he hasand developing like he has, and
gaining head control, and beingable to drive a power chair and
(23:39):
use a communication device.
And, you know, just in the lastcouple of weeks he started to a
fork to eat and all of thosethings are just little miracles
that happen.
And so I think, you want to bean optimistic person and think,
well, maybe someday he's goingto do better and sitting on the
toilet and let's not install alift.
(24:01):
Because maybe there's that hopethat you hold onto that you
don't need that extra support.
But you know, there just comes atime when you're like, it'll
make our life easier.
It'll make his life a littleeasier, and you can always take
away supports that you haveadded, um, is kind of the way we
looked at it.
But it's definitely an emotionalroller coaster of do we need
(24:26):
this and how much do we need?
Allycia Wolff (24:28):
Mmmm hmm
Brian Thayer (24:31):
Yeah, and I, you were, you used the word miracles
and I know exactly what you meanby that, but it, it, it's a
miracle based on tens ofthousands of hours of work.
Now the fact that he can drivehis power chair is, it took us
three years to get to that pointand, and we have massive holes
in our walls of our, and ourdoors.
(24:53):
I mean, he drove right throughthe bedroom door of, of our
house.
We had to take the door down andreplace it.
And so it's, it's not, yes, it'sa miracle that he can, it's
wonderful that he can do thesethings now.
But um, it really, it takes alot of persistence on the
parents' part.
And we've, and we've struggled alot with, just like the, you
(25:18):
know, the, with him, you didn'tlearn how to use his Tobii
eye-gaze device.
We were told, well just put iton the, on the kitchen table.
And he'll-
Allycia Wolff (25:26):
And Tobii is a communication device?
Because Roa doesn't use words tocommunicate and like full
sentences.
And so the Tobii is a way tospeak, have technology speak for
him.
Brian Thayer (25:38):
Yeah.
So it can track his eyemovements as he finds words on
the screen and he locks on it.
It will say those words.
And it's a skill that needs tobe practiced over and over
again.
And you know, just how long didit take us to get in the
practice of putting that thingon the kitchen table where he
sits so he can practice it.
(25:58):
And we still, uh, we still knowwhat he's, you know, he,
sometimes he talks in code andyou've got to figure out what he
says, but, uh, you know, it's,it's thousands of hours of, of
therapy and an effort that youwould, you would never need to
put into somebody who doesn'thave special needs.
And that's, that's probably thehardest part of being.
(26:21):
Is was all the extra if youwant, if you want something for
your child with special needs,it's so much extra effort and
thought and emotional input andeverything.
Allycia Wolff (26:34):
Mmm hmm Just, I mean, I saw something recently,
you were looking into some sortof assistive for Roa and it was
like$5,000.
Jen Thayer (26:46):
Right! Yes.
Everything comes with a heftyprice tag in the world of
special needs and-
Allycia Wolff (26:52):
It's the price tag and the time and all those
things.
And I love what you said aboutlike, yeah, it's a miracle, but
it's a hard worked...
miracle
Jen Thayer (27:00):
It is.
It is.
And yeah, to the typical person,a video of your child eating
from a fork isn't that big of adeal for us.
It really has been 11 years oftrying to get, you know, little
baby Roa could not get his handto his mouth because of his
(27:21):
reflexes and the tightness ofhis muscles.
So it is, it is really a miracleto us.
And yeah, and just the fact thateven even that eating with a
fork, even though the fork isadapted, you know, with a built
up foam handle for him to holdonto.
And like Brian mentioned, likeeverything in our life has to be
(27:44):
thought out, from the pillow hesleeps on at night to, um, how
we're going to get him into abuilding when we drive up
somewhere.
You have to think abouteverything in CP land.
Allycia Wolff (27:57):
What is CP land?
Jen Thayer (27:58):
Um, CP land is just what we'd call where we live now
in this world of special needs.
It's...
Brian Thayer (28:05):
Cerebral palsy.
Jen Thayer (28:06):
Cerebral palsy world, cerebral palsy land, is
kind of where we're at.
Our whole life kind of revolvesaround how to include Roa in it.
Allycia Wolff (28:16):
Mmm hmm, yeah, I see you.
I see your family unit workingso hard to really help Roa live
a good life.
And I see Roa living such a goodlife.
Jen Thayer (28:30):
Yeah.
Well thank you.
We, you know, I think Brian andI chat sometimes that I think
because I was a specialeducation teacher and I saw
quite a few different familiesand different family dynamics.
I really find it super importantto not only let Roa be a part of
(28:53):
typical kid things, but fortypical kids to be a part of
Roa's life and Roa's worldbecause they learn so much just
by seeing people who aredifferent and who have to
maneuver through our worlddifferently.
So I think it's just a gift thatRoa can give back to the world
just by being out there andbeing a part of things.
(29:14):
And you know, whatever we can doto let him be a part of, you
know, the typical world we willdo.
Brian Thayer (29:24):
And it's partially his personality too.
He's a very outgoing person andhe loves to go places.
He loves to have adventures.
He, you know, he loves in thesummer, when it starts snowing
out, and he loves to take hiswheelchair through a park or
down roads and get muddy andstuff like that.
(29:45):
Then that's just hispersonality.
Yeah.
Other son, Gunner, hispersonality is he doesn't want
to leave the house foranything..
video games, video games.
Yes.
And to get them outside to dosomething is it takes a crane.
Um, so a lot of it is just hispersonality of wanting to be
involved in the world and notjust be at home.
Allycia Wolff (30:04):
Absolutely.
If you were to think overall inhow you care for yourself on a
day to day basis and throughoutyour life, and if you wanted to
share two or three tips, like ifyou could only share two or
three things, what would theybe?
Brian Thayer (30:27):
I would say sleep every chance you get.
Exercise, and figure out what itis that you need, and try and
get as much as that as you can.
And understand that you mightnot be able to get a whole day
of something, but maybe you canget an hour every couple of days
(30:50):
of the thing that you need tokeep yourself whole.
Jen Thayer (30:55):
The other thing that I think of is just it's okay to
question, it's okay to questionyourself, to ask questions of
all the professionals that you,you will deal with.
That's a big one.
I mean, you just, you'reconstantly wondering what you
could do differently and whatyou could do better.
(31:16):
And I think that justcommunication with, with, um,
with your family and with, withyour child is it's just so
important, um, to just be able,just be comfortable with talking
about everything.
Allycia Wolff (31:32):
I love that.
Thank you.
I think that this is a greatplace to wrap up.
Thank you again for, for comingin and sharing your piece of
this.
Thank you once again to theThayer family for coming in and
sharing this really importantpart of their lives.
(31:55):
Um, there were multiple times inthe interview where I was
humbled by their vulnerabilityand willingness to share.
I think that it will probablyresonate pretty deeply with a
few people.
So thank you Jen and Brian onceagain.
Something that Brian said at thevery end of that interview
really hit me in thisconversation about caregiver
(32:18):
care and really establishingwhat you need.
And then he said, what keeps youwhole?
And so that is going to be mytakeaway for each and every
person listening to this podcasttoday.
What keeps you whole?
(32:38):
What makes you feel your best?
And try to identify that itcould be multiple things, but
even just giving it language andthought and recognizing it can
be a pretty powerful tool andbringing more of it
intentionally into your life.
Consider that and do it.
Thank you for joining us in thisweek's episode of Focus on the
(33:02):
Future.
If any of this content inspiredany questions for an Advocate at
the Arc, please give us a call.
We can be reached at(833)450-1494.
Focus on the Future is a podcastof The Arc Minnesota.
Subscribe to the podcast on yourfavorite streaming service to
stay up to date with the newestepisodes.
(33:23):
If you're enjoying listening,please support the podcast and
our mission by donating atarcminnesota.org/ podcast.
In the next episode of Focus onthe Future, I will be speaking
with Dr Nancy Fitzsimmons out ofMankato University.
She's a professor there, and shehas spent a lot of time building
(33:43):
a career around how people canlive and create their own good
lives through not only choicebut also through, um, safety and
autonomy and just tune in to seewhat we, uh, what we have to
talk about it.
It'll be a lot of really greatcontent and how everybody in our
(34:04):
society can encourage peoplewith disabilities to live good,
meaningful, happy lives with asmuch choice and safety as
possible.
Our podcast music is composedand recorded by Micah Kadwell.
Micah is a talented guitaristfrom New Brighton, Minnesota who
also has autism.
Thank you.
Micah.
(34:25):
Focus on the Future isco-produced by Chloe Ahlf and
myself, and is engineered byBrent Nelson.
Thank you, Chloe and Brent.
What a great team we have here.
Thanks that everybody ready fortuning in and we will see you
next time.
Welcome to Focus on the Future, a future planning
podcast for caregivers andfamilies, supporting people with
disabilities.
Focus on the Future is a podcastof The Arc Minnesota, a
nonprofit organizationadvocating for folks with
intellectual and developmentaldisabilities.
My name is Allycia Wolff and I'man advocate here with The Arc
Minnesota and your host forFocus on the Future.
(00:24):
In this week's episode, we aregoing to be speaking with Brian
and Jen Thayer from White BearLake, Minnesota about their
experience in caring for theirson, Roa, and how amongst all of
the care that they're providing,they're able to care for
themselves.
Thanks for joining us.
Music (00:41):
[music playing]
Allycia Wolff (00:47):
To start this week's podcast, I want to take
one moment for everybody who islistening to take count of
themselves, where they are, andhow they're feeling.
So join me for just one minuteas we do a little meditation
practice.
We're going to start bybreathing and when you're ready,
(01:09):
take one big inhale and one slowexhale.
Look around and take count ofwhere you are.
What are you doing in thismoment?
(01:30):
Actually physically look around.
What's the weather like?
What does it smell like?
How do you feel?
Consider where your body is inthis moment and what part of you
is touching the ground or theearth.
(01:52):
Are you sitting or standing?
And then little by little, we'regoing to work from wherever
we're touching the ground up tothe top of our body.
So you may wiggle your toes,extend your ankles, relax your
(02:14):
legs, sit up just a little bitstraighter and lengthen your
spine, open and close your jaw.
Relax any tension out of yourforehead.
And one more time.
Inhale, fill up all of the partsof your lungs and exhale slowly.
(02:44):
Let it all out.
Taking just a few moments everyday to be aware of how you feel
can give you space to processand focus.
A lot of the things that I'velearned about meditation really
(03:07):
highlight that meditation itselfis the practice of focusing.
And if you can make yourselffocus in a meditation, it
enhances the rest of your lifebecause you're able to focus in
times when you're stressed orfeeling overwhelmed or even in
the times that you're happy.
I think we've all had momentswhere we can be pretty
(03:30):
overwhelmed.
And so later on in your day orin any moment moving forward,
remember that you can breatheand take count of where you are
and what your body feels like tofeel more grounded in whatever
space you're taking up.
Moving forward, today I sat downand talked with Jen and Brian
(03:53):
Thayer about caregiving and howcaring for their son Roa has
impacted their life and theirrelationship and how they see
themselves and how they copewith being a caregiver.
They had a lot of reallywonderful things to note.
I know Jen and Brian Thayerpersonally and professionally in
my life and it was really greatto sit down and chat with them.
(04:16):
So here is their interview.
Welcome, Thayers.
Thank you so much for being heretoday.
Would you mind introducingyourselves?
Brian Thayer (04:29):
Yeah, thanks for having us here.
My name is Brian Thayer.
Jen Thayer (04:34):
And I'm Jen Thayer.
Allycia Wolff (04:36):
Great, thanks.
And you guys live in White BearLake still?
Jen Thayer (04:40):
Correct.
Allycia Wolff (04:41):
Yeah.
Tell me about your kiddo.
Jen Thayer (04:43):
So we have two boys.
Our oldest is 11 years old andhas quadra spastic cerebral
palsy.
And then we have one other sonand he is nine and he's just
kind of your typical kid.
Allycia Wolff (04:59):
Great.
So we are going to chat today alittle bit about what it means
to be a caregiver and how youcan take care of yourself
amongst all of that.
And first I would love to hearBrian about the group that
you've recently started.
You're facilitating kind of likea dad's group, right?
Brian Thayer (05:18):
Yeah, that's something we've, we've had two
meetings now.
We're meeting once a month.
And it's just something thatI've been thinking about
probably for almost a year,where I noticed that there was a
lot of groups and a lot ofFacebook pages and all that
stuff that are really focusedtowards the moms or the female
(05:38):
caregivers.
And I would meet with a coupleof other dads like maybe once or
twice a year and just got a lotout of that.
And I thought, well, it'd begreat if we could expand this to
people outside of my circle, youknow, so other dads could come
or other male caregivers couldjust come and, and you know, we
(06:01):
talk about work, we talk aboutsports, we talk about, uh, our
kids' bowels movements.
[laughs] We talk about feedingthem, we talk about therapies,
just kinda anything that comesup.
And it's really freeing to beable to talk to people who
understand that kind of stuff.
Instead of..
I get a dad who only has typicalkids, you can't talk to them
(06:23):
about some of the things you runinto with a child with special
needs cause they just, one theydon't understand.
And two, you get, you know, youget sympathy or you get pity.
You don't get, God, yeah, I knowthat happened to me yesterday
and here's my story.
And to be able to laugh aboutthat kind of stuff because it
is, it's part of life and yougotta laugh about it.
(06:43):
So...
Allycia Wolff (06:45):
And Jen, how do you feel that you connect with
different caregivers?
Jen Thayer (06:52):
Um, you know, social media is kind of the biggest
outlet that we have.
And when Roa was smaller, wetried to do some mom meetups and
things like that, but life isbusy for people and so many
people do balance, family andcareer and you know, in some
cases there's divorce and theydon't have their child all the
(07:14):
time.
And there's so many differentthings that just make meeting up
in a group on Facebook just theeasiest way.
Allycia Wolff (07:25):
And what about hiring caregivers?
Tell me what that experience hasbeen like to hire somebody that
you don't know and welcome theminto your home to support Roa.
Jen Thayer (07:36):
You know, honestly as parents, when we first
started hiring PCA's to come in,the personal caregivers, to help
us care for Roa, it was nervewracking because we knew how he
had to hold his head to swallowand we knew how he had to fall
asleep at night in order to, youknow, not have reflux happen or
(07:58):
all of those different thingsthat we think about, they
wouldn't think about.
And so, it's exhausting havingto train someone to be another
you.
Allycia Wolff (08:07):
Absolutely.
How do you continue to balancethat in your own life?
Because it is so exhausting tobring people in.
You know, because if you coulddo it all you would, right?
I feel like, like I know youguys generally enough to know
that you would, but how do youbalance that?
Brian Thayer (08:28):
It's really difficult from our standpoint
when we interview people to be aPCA, they really, we really have
to be comfortable with them.
And we've had a few in the pastso we just weren't comfortable
with and our son Roa didn't likethem either.
You know he can't tell us that,but he can communicate it to us.
(08:51):
And in the end it didn't workout very well.
So the first step is, is whenyou're meeting with somebody, do
ya just feel absolutelycomfortable with them and feel
like you can trust them withyour child who needs everything
from you.
Allycia Wolff (09:07):
Making sure that your like vibes align.
It sounds, it sounds kind ofhippie, but it's, I think that,
that there's a lot of warrant tothat.
Brian Thayer (09:15):
Yeah.
And then setting up some veryclear boundaries and very clear
expectations.
Allycia Wolff (09:23):
How do you do that?
Jen Thayer (09:26):
You know, I really, one of the things that we live
by in our family is humor andjust being straightforward and
honest, you know.
We are big...um, communicationis where it's at.
And so I always like to touchbase.
I always make sure they feelcomfortable coming to me with
anything, with any issue, withany question that they have and
(09:49):
kind of setting that up rightaway that we are just, you are
going to be an extension of ourfamily.
You're in here with us and justfeel free to talk to us in any,
you know, with anything that youhave.
And like Brian said, youdo....When we first talk, we
talk about the guidelines, wemake sure, you know, a couple of
weeks to a few months into theirhelp, we make sure that we say,
(10:14):
is there anything that you'requestioning.
I mean, how was the bathroomgoing?
How was, you know, do you feelcomfortable driving a handicap
accessible van?
All of those things cause theyall come into play with
caregiving.
Allycia Wolff (10:29):
Absolutely.
Yeah.
It's a really big piece of yourlife to, just to like, open up
your home and that level ofprivacy to different people and
have, you know, like staffturnover is a reality for
everybody.
How do you make sure that you asa family have private time, the
(10:49):
four of you and then as acouple?
Brian Thayer (10:54):
I think as a family now when we have a PCA,
it's usually for the summer, forparts of the day.
And then throughout the schoolyear as we can get one so we can
have time together, the two ofus, Jen and I.
Other than that, we don'treally, the PCA isn't really
around if both Jen and I arearound.
So from a family, private time,we have a lot of private time.
(11:19):
Our kids are not involved insports or a lot of extra school
activities except for therapyand church.
So we have a lot of family timetogether, which is good.
And then Jen and I, we get...
You know, we went out for lunchbefore we came here and I can't
(11:40):
remember the last time weprobably got to go out together.
I know it's been a while, butyou gotta find those small
moments during the course of theday or the week to do that stuff
because our experience has been,you're not going to get that
weekend away or you don't get togo someplace overnight very
(12:02):
often without the kids just,because of the level of
caregiving.
So I would say just finding thesmall moments is huge.
Jen Thayer (12:12):
Yeah.
I think too with that on apositive note about it, like
when you do have those moments,you really try and make the most
of them, and you soak up everyminute that you can.
Another thing that has reallyhelped is we are very routine in
our family.
And just having a set scheduleand routine, you know...
(12:33):
We always try and touch base andtalk about, you know, the budget
on Saturday mornings and we talkabout, you know, our kids and
involvement in school activitiesin the evening when Brian is
home.
Yep.
And we have a whiteboard wherewe write our calendar, when
dad's gonna be gone for work orwhen the kids have something
(12:55):
special coming up.
So we try andjust...communication is huge.
And just having that expectationmet with the schedule.
Allycia Wolff (13:06):
One thing that we find is the divorce rate is
higher with families that arecaring for a child with a
disability versus families thatdon't have a child with a
disability.
So the rate is much higherbecause of the stress and the
communication that's needed inthat process.
Do you have anything that you'dlike to share to that?
Brian Thayer (13:28):
From the man, the father, the husband side of
things, is that your role in thefamily is going to be so much
different than maybe what youexperienced growing up from your
father or what you had in mindfor what being a father is going
to be.
(13:48):
I know in my mind it was goingto be hockey games and playing
out in the yard and you know,all this fun stuff, right?
And as the father to a specialneeds child, it's not that
definitely.
It's helping them go to thebathroom, it's feeding him three
(14:09):
meals a day.
It's washing him in the shower,it's picking up and carrying him
from one spot to another toanother.
It's nothing that I expected andI think that really, and that's
part of the whole dad's groupthat I wanted to start was
dealing with some of thosefeelings and some of those
thoughts that this wasn't how Iplanned my life to be.
(14:30):
And it's really, it can be areal inconvenience to people and
especially in society where theman is supposed to be the go to
work, bring home the paycheckand you know, fix things around
the house.
You're not really allowed to orsupposed to do all the intimate
things that you have to do withyour child with special needs.
(14:52):
And it can be a real, it can bea real divider in families,
especially if the husband, dad,wants to maintain that role and
the mom is over here saying, Ineed so much more from you than
that.
And how do you, how do you getto that spot where both you
understand that, and, and arewilling to give a little.
Allycia Wolff (15:15):
How do you get to that spot?
Jen Thayer (15:18):
We had some tough years.
We had some years of justexploration of our roles.
After being a career woman,being a teacher for so long, and
then staying at home, you alwaysexpect that you'll go back to
work.
Your kids will go to school andthen I would go back to
teaching.
And to have that change to beingfull time caregiver and you
(15:43):
know, spending a lot of time onthe phone, making appointments
or worrying about bills andcatching up on sleep and keeping
up with, you know, laundry andall of those things.
And I think it's just, you know,the fact that like Brian said,
Roa, you know, needing help withevery single daily task.
(16:08):
It's like having a lifetimeinfant.
It's someone who relies on youfor everything, from sitting up
to, eating and it really doestake a toll on you and just as a
couple, you feel disconnected alot, especially when Brian
(16:28):
travels for work.
And he comes home and I just, Isay I need time.
I need time away.
You need to take them.
And Brian's thinking, I justgot, I have jet lag, I need a
break.
I need some time to just catch abreath and you know, I want him
to be with the boys and caringfor Roa.
And so it took some, a lot ofdiscussion, you know, both him
(16:50):
and I have been to therapyseparately just to work on our
own feelings about having achild with needs and trying to
balance the, this is my role nowin life and this is primarily
who we are.
And there aren't very manypeople that you can talk to who
truly understand, but I can saythat I understand why divorce
(17:14):
rate is higher with all thestresses of special needs, but I
can also, you know, put thepositive spin on that.
It really does take justcommunication, and sharing with
each other what you personallyneed.
Allycia Wolff (17:27):
And in the end, seeing both of you and your
relationship, even though in thepast few years it's been like
that, a little bit of adistance.
You have developed thatcommunication style really well
with each other and it seemslike you are constantly
reevaluating it.
(17:48):
Like you never really into a, Ohyeah, we've got it.
It's easy.
Brian Thayer (17:54):
No, I think as soon as you think we got it,
it's easy.
You're going to, it's going toslip away.
We are constantly, I shouldn'tsay constantly, but we talk
about, we talk about it a lot,you know, probably more than
other couples do.
And just, you know, a couple ofyears ago, things were real bad
(18:19):
and you know, it took a lot of,took a lot of work, took a lot
of communication, took a lot oftrust and honesty to get to a
spot where we're at now, whichis, which is pretty good, I
think.
For me I'm more comfortable whenshe's not talking to me then
than it was before.
I'm like, when she wasn'ttalking to me before, I'm like,
(18:41):
Oh my God, something's wrong.
And then, and now it's justlike, okay, well we just don't
have anything to say and that'sfine.
Allycia Wolff (18:48):
Mm.
Jen Thayer (18:48):
Yeah.
Allycia Wolff (18:49):
Yeah.
How long have you been togetheras a couple?
Brian Thayer (18:55):
15 years.
2005.
2005.
Allycia Wolff (18:59):
Yeah.
That's hilarious.
Well.
Congratulations.
I want to just talk a little bitabout how your son requires
assistance to be able to go tothe bathroom and to walk and to
do a lot of like physicalactivities on his own.
And so not only caregivingrequires a lot of emotional
(19:21):
commitment from you, but it alsorequires a lot of physical
commitment.
And so how have you been able totake care of your body as well
as your mind and soul?
Jen Thayer (19:33):
That is such an important question and something
that I never really thoughtabout.
I was a special educationteacher in my past before I had
Roa and you know, I knew alittle bit of the toll that it
would take on my body fromhaving to, you know, lift and
position and help support someof my students.
(19:55):
But now knowing that it's everyday of my life having to lift
and support and move my sonmultiple times during the day,
you really do see just the wearand tear on your back and your
neck and your muscles ingeneral.
And you know, with Roathere's...
(20:16):
there's sleep issues.
And so we never have a fullnight's sleep any of us in our
home.
So we really, exercise has beenkey in our lives.
It ebbs and flows just like witheveryone.
But just, you know, for me it'sbeen, I walk every day and, you
(20:38):
know, pilates and yoga and someweight training and, Brian, I'll
let you speak for yourself, butjust really making sure
chiropractic care is essentialin our family's life.
But it does, it really takes atoll on your body and it's
another reason why it's soimportant to get that support
(21:00):
when you can.
And I think there's a prideissue sometimes when it comes
to, do we need a lift for thebathroom?
Do you need a toilet chair?
Do you, and you want to say no,that you can handle it, but
sometimes it's okay to just sayyes, it's time to look at a
lift.
And that's, we're in the processright now of installing a track
(21:22):
system to help get Roa to thebathroom and into the shower,
just to kind of save our bodiesa little bit.
Brian Thayer (21:31):
Yeah, I agree with everything you just said.
Uh, working out or gettingexercise is important.
Uh, both physically andmentally.
Um, stretching, eating right formyself, if I eat too much junk,
that really affects everythingin my life in a negative way.
(21:53):
Also, I go to therapy.
I have been for two years nowand, that's not, I mean, I'm not
going to say it's not somethingI thought I'd ever do, but I am
surprised at how much it'sactually helped me.
I was going like every week tobegin with.
Now it's every other week.
(22:13):
But I think just you gotta takecare of yourself and you can't
be, as a guy I should say, youcan't be embarrassed to do that
kind of stuff.
It's perfectly normal and yougotta deal with the stuff or it
just builds up and, and it isreally negative for everybody.
Allycia Wolff (22:33):
Yeah, absolutely.
You said, you said earlier, Jen,that you have to keep your pride
in check, especially with likeinstalling the hoyers and stuff
because you're gonna want to doall that.
You want to do everything foryour son.
Can you tell me more about likehow you waffle with that?
Jen Thayer (22:55):
Yeah.
And you know, there's also, um,depending on the disability with
Roa and Cerebral Palsy, um, youknow, when Roa was first
diagnosed, it was not a veryuplifting, um, discussion that
we had with the neurologist.
You know, we, we were told thathe may not, we probably would
push him in a chair.
(23:16):
He may not eat by mouth,probably would never hold a
pencil, may been tube fed, willmost likely never use a toilet.
We were told all the reallynegative things.
And so Roa growing like he hasand developing like he has, and
gaining head control, and beingable to drive a power chair and
(23:39):
use a communication device.
And, you know, just in the lastcouple of weeks he started to a
fork to eat and all of thosethings are just little miracles
that happen.
And so I think, you want to bean optimistic person and think,
well, maybe someday he's goingto do better and sitting on the
toilet and let's not install alift.
(24:01):
Because maybe there's that hopethat you hold onto that you
don't need that extra support.
But you know, there just comes atime when you're like, it'll
make our life easier.
It'll make his life a littleeasier, and you can always take
away supports that you haveadded, um, is kind of the way we
looked at it.
But it's definitely an emotionalroller coaster of do we need
(24:26):
this and how much do we need?
Allycia Wolff (24:28):
Mmmm hmm
Brian Thayer (24:31):
Yeah, and I, you were, you used the word miracles
and I know exactly what you meanby that, but it, it, it's a
miracle based on tens ofthousands of hours of work.
Now the fact that he can drivehis power chair is, it took us
three years to get to that pointand, and we have massive holes
in our walls of our, and ourdoors.
(24:53):
I mean, he drove right throughthe bedroom door of, of our
house.
We had to take the door down andreplace it.
And so it's, it's not, yes, it'sa miracle that he can, it's
wonderful that he can do thesethings now.
But um, it really, it takes alot of persistence on the
parents' part.
And we've, and we've struggled alot with, just like the, you
(25:18):
know, the, with him, you didn'tlearn how to use his Tobii
eye-gaze device.
We were told, well just put iton the, on the kitchen table.
And he'll-
Allycia Wolff (25:26):
And Tobii is a communication device?
Because Roa doesn't use words tocommunicate and like full
sentences.
And so the Tobii is a way tospeak, have technology speak for
him.
Brian Thayer (25:38):
Yeah.
So it can track his eyemovements as he finds words on
the screen and he locks on it.
It will say those words.
And it's a skill that needs tobe practiced over and over
again.
And you know, just how long didit take us to get in the
practice of putting that thingon the kitchen table where he
sits so he can practice it.
(25:58):
And we still, uh, we still knowwhat he's, you know, he,
sometimes he talks in code andyou've got to figure out what he
says, but, uh, you know, it's,it's thousands of hours of, of
therapy and an effort that youwould, you would never need to
put into somebody who doesn'thave special needs.
And that's, that's probably thehardest part of being.
(26:21):
Is was all the extra if youwant, if you want something for
your child with special needs,it's so much extra effort and
thought and emotional input andeverything.
Allycia Wolff (26:34):
Mmm hmm Just, I mean, I saw something recently,
you were looking into some sortof assistive for Roa and it was
like$5,000.
Jen Thayer (26:46):
Right! Yes.
Everything comes with a heftyprice tag in the world of
special needs and-
Allycia Wolff (26:52):
It's the price tag and the time and all those
things.
And I love what you said aboutlike, yeah, it's a miracle, but
it's a hard worked...
miracle
Jen Thayer (27:00):
It is.
It is.
And yeah, to the typical person,a video of your child eating
from a fork isn't that big of adeal for us.
It really has been 11 years oftrying to get, you know, little
baby Roa could not get his handto his mouth because of his
(27:21):
reflexes and the tightness ofhis muscles.
So it is, it is really a miracleto us.
And yeah, and just the fact thateven even that eating with a
fork, even though the fork isadapted, you know, with a built
up foam handle for him to holdonto.
And like Brian mentioned, likeeverything in our life has to be
(27:44):
thought out, from the pillow hesleeps on at night to, um, how
we're going to get him into abuilding when we drive up
somewhere.
You have to think abouteverything in CP land.
Allycia Wolff (27:57):
What is CP land?
Jen Thayer (27:58):
Um, CP land is just what we'd call where we live now
in this world of special needs.
It's...
Brian Thayer (28:05):
Cerebral palsy.
Jen Thayer (28:06):
Cerebral palsy world, cerebral palsy land, is
kind of where we're at.
Our whole life kind of revolvesaround how to include Roa in it.
Allycia Wolff (28:16):
Mmm hmm, yeah, I see you.
I see your family unit workingso hard to really help Roa live
a good life.
And I see Roa living such a goodlife.
Jen Thayer (28:30):
Yeah.
Well thank you.
We, you know, I think Brian andI chat sometimes that I think
because I was a specialeducation teacher and I saw
quite a few different familiesand different family dynamics.
I really find it super importantto not only let Roa be a part of
(28:53):
typical kid things, but fortypical kids to be a part of
Roa's life and Roa's worldbecause they learn so much just
by seeing people who aredifferent and who have to
maneuver through our worlddifferently.
So I think it's just a gift thatRoa can give back to the world
just by being out there andbeing a part of things.
(29:14):
And you know, whatever we can doto let him be a part of, you
know, the typical world we willdo.
Brian Thayer (29:24):
And it's partially his personality too.
He's a very outgoing person andhe loves to go places.
He loves to have adventures.
He, you know, he loves in thesummer, when it starts snowing
out, and he loves to take hiswheelchair through a park or
down roads and get muddy andstuff like that.
(29:45):
Then that's just hispersonality.
Yeah.
Other son, Gunner, hispersonality is he doesn't want
to leave the house foranything..
video games, video games.
Yes.
And to get them outside to dosomething is it takes a crane.
Um, so a lot of it is just hispersonality of wanting to be
involved in the world and notjust be at home.
Allycia Wolff (30:04):
Absolutely.
If you were to think overall inhow you care for yourself on a
day to day basis and throughoutyour life, and if you wanted to
share two or three tips, like ifyou could only share two or
three things, what would theybe?
Brian Thayer (30:27):
I would say sleep every chance you get.
Exercise, and figure out what itis that you need, and try and
get as much as that as you can.
And understand that you mightnot be able to get a whole day
of something, but maybe you canget an hour every couple of days
(30:50):
of the thing that you need tokeep yourself whole.
Jen Thayer (30:55):
The other thing that I think of is just it's okay to
question, it's okay to questionyourself, to ask questions of
all the professionals that you,you will deal with.
That's a big one.
I mean, you just, you'reconstantly wondering what you
could do differently and whatyou could do better.
(31:16):
And I think that justcommunication with, with, um,
with your family and with, withyour child is it's just so
important, um, to just be able,just be comfortable with talking
about everything.
Allycia Wolff (31:32):
I love that.
Thank you.
I think that this is a greatplace to wrap up.
Thank you again for, for comingin and sharing your piece of
this.
Thank you once again to theThayer family for coming in and
sharing this really importantpart of their lives.
(31:55):
Um, there were multiple times inthe interview where I was
humbled by their vulnerabilityand willingness to share.
I think that it will probablyresonate pretty deeply with a
few people.
So thank you Jen and Brian onceagain.
Something that Brian said at thevery end of that interview
really hit me in thisconversation about caregiver
(32:18):
care and really establishingwhat you need.
And then he said, what keeps youwhole?
And so that is going to be mytakeaway for each and every
person listening to this podcasttoday.
What keeps you whole?
(32:38):
What makes you feel your best?
And try to identify that itcould be multiple things, but
even just giving it language andthought and recognizing it can
be a pretty powerful tool andbringing more of it
intentionally into your life.
Consider that and do it.
Thank you for joining us in thisweek's episode of Focus on the
(33:02):
Future.
If any of this content inspiredany questions for an Advocate at
the Arc, please give us a call.
We can be reached at(833)450-1494.
Focus on the Future is a podcastof The Arc Minnesota.
Subscribe to the podcast on yourfavorite streaming service to
stay up to date with the newestepisodes.
(33:23):
If you're enjoying listening,please support the podcast and
our mission by donating atarcminnesota.org/ podcast.
In the next episode of Focus onthe Future, I will be speaking
with Dr Nancy Fitzsimmons out ofMankato University.
She's a professor there, and shehas spent a lot of time building
(33:43):
a career around how people canlive and create their own good
lives through not only choicebut also through, um, safety and
autonomy and just tune in to seewhat we, uh, what we have to
talk about it.
It'll be a lot of really greatcontent and how everybody in our
(34:04):
society can encourage peoplewith disabilities to live good,
meaningful, happy lives with asmuch choice and safety as
possible.
Our podcast music is composedand recorded by Micah Kadwell.
Micah is a talented guitaristfrom New Brighton, Minnesota who
also has autism.
Thank you.
Micah.
(34:25):
Focus on the Future isco-produced by Chloe Ahlf and
myself, and is engineered byBrent Nelson.
Thank you, Chloe and Brent.
What a great team we have here.
Thanks that everybody ready fortuning in and we will see you
next time.
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