Self-Care is a Joke (That We Need to Take Seriously)
May 7, 2025
For so many of us, the idea of self-care is a joke. And for good reason. There are literally not enough hours in the day to do what's "required" of us, let alone take a break to focus on ourselves.
Rather than telling you why you need to make time, this episode offers validation. And some tangible takeaways that are actually doable!
The Odyssey: Parenting. Caregiving. Disability.
The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.
SHOW NOTES:
Carolyn Hax is the syndicated advice columnist with The Washington Post mentioned in this epsidoe.
SLIDES:
TRANSCRIPT:
01:00:06:24 - 01:00:34:24
Erin Croyle
Welcome to the Odyssey. Parenting. Caregiving. Disability. I'm Erin
Croyle, the creator and host. The Odyssey podcast explores the turn
our lives take when a loved one has a disability. My seismic shift
came when my first child was born with Down's Syndrome in 2010.
I've been going virtually nonstop ever since I joined the center
for Family Involvement at Lucas Partnership for people with
disabilities.
01:00:34:24 - 01:01:03:14
Erin Croyle
A few years after he was born. Utilizing my journalism and TV
producer skills as a communications specialist, a topic that comes
up time and time again in my work and my life is self-care. And for
good reason. If you ask a parent who's also the primary caregiver
in their family their thoughts on self-care, you'll probably get an
eyeroll or a laugh or a stare down that feels like daggers shooting
right through you.
01:01:03:16 - 01:01:30:08
Erin Croyle
The reality is, for so many of us, the idea of self-care is a joke.
So rather than me talking about how important it is and why you
should prioritize it, I'm going to break down why self-care is
practically impossible. Instead of the usual self-care gaslighting,
it's time for some validation as to why we either can't seem to
make it happen or suffer when we do.
01:01:30:10 - 01:01:41:09
Erin Croyle
And maybe offer some practical, attainable ways to take care of
you.
01:01:41:11 - 01:02:06:19
Erin Croyle
Real talk as usual. I actually have an interview with our mental
health specialist, Patrice Behar that's in the can that I can't
wait to share with you. And I've got a few other interviews that I
can't wait to line up and do, and, I mean, I say this over and over
again because it's true. Things are just relentless in my life, and
I know that I'm not alone in that.
01:02:06:21 - 01:02:34:23
Erin Croyle
In the past month, I did a talk about self-care to, caregivers in
Ohio, where I'm from. Shout out. Represent. Love that state. Even
though it's the butt of so many jokes, especially with my, Gen Z
Gen Alpha kiddos. Anyway, what kept resonating with me is I was
like, struggling. Finding time to edit that interview with Patrice
is to practice what I preach.
01:02:35:00 - 01:03:06:11
Erin Croyle
So I recognize that I have been bombarded with life. And as parents
and as humans, that's what happens. But what we don't really take
into account is that as caregivers, that happens sometimes times a
thousand, right? In this past month, my oldest kiddo, Arlo, who has
multiple disabilities, including Down's syndrome, got really,
really sick and when he gets sick, it's it's real, right?
01:03:06:12 - 01:03:34:08
Erin Croyle
A cold can knock him out and put him in the hospital. And funny
enough, while I was giving that, workshop on self-care was when he
walked into my office and started coughing and literally
interrupted and I heard the cough and I said, for example, I'm
probably going to have to manage his stuff. And sure enough, the
next day I was on the phone with pulmonology, and since then I've
had to rearrange a sleep study, and he was out of school.
01:03:34:08 - 01:03:51:11
Erin Croyle
And the steroids and other medicines he's on has has just kind of
put him out of whack. And I've had to help with his anxiety getting
him back to school. And the other two kiddos were really, really
sick. But at different times. So then they were off school. And so
of course I was sick. But that doesn't matter.
01:03:51:11 - 01:04:33:03
Erin Croyle
You know, we power through as parents when we're sick. It doesn't
matter. So I was coughing up a storm and managing and that's what
we do. But when it came time again to edit this interview and I was
like, how am I going to do it? Instead of staying up and pulling
all nighters like, you know what? I'm going to give that the time
it deserves, and I'm going to practice what I preach, and I'm just
going to go ahead and try to riff through a podcast on my own and
do this presentation one, to remind myself why things that seem to
be doable are so impossible, and why deadlines that we set for
ourselves.
01:04:33:05 - 01:05:05:12
Erin Croyle
We have to give ourselves so much grace. And also why, even though
I a lot for ample time to get all the things I need to get done,
done. Rarely do I ever get anything done. And it's not for lack of
trying and it's not for not constantly working. I don't rest, I
don't practice self-care enough. But what I have preached and what
I recognize is that my form of self-care this month was saying, you
know what?
01:05:05:14 - 01:05:30:07
Erin Croyle
My April podcast is going to come out in early May, and hopefully I
will edit my Patrice interview for my May podcast and get it out in
May. And let me talk about why, because that validation and the
relation and understanding that we're not alone in this and
pretending that everything's fine and it's not, it is hard and it
seems like the hard never ends.
01:05:30:07 - 01:05:52:22
Erin Croyle
And I don't know if that's middle age or parenting or caregiving or
the world we live in, but hey. So without further ado, I'm going to
go ahead and roll into my workshop on Self-care for caregivers,
which I probably should have titled Self-care is a joke that We
Need to Take Seriously. As I said in my intro, I'm Erin Croyle.
01:05:52:22 - 01:06:14:20
Erin Croyle
I'm from Ohio. I am a journalist, a writer, a speaker, a podcaster.
I'm a parent, I'm a caregiver, and I'm an advocate for disability
rights and just human rights. In the show notes, I'll probably put
the slide presentation in there, but you're listening to this, so
I'm going to kind of present based on slides, just, just take a
listen and sort of picture this, okay?
01:06:14:20 - 01:06:29:01
Erin Croyle
And reflect on these words that I'll say very slowly. Be honest.
What is your gut reaction to the term self-care?
01:06:29:03 - 01:06:58:01
Erin Croyle
Now take a moment to really think about it. Because for me, I
really do roll my eyes. We all know that it's important, but for
many of us it feels or truly is unattainable. And in my opinion,
the term itself is totally overused. And that's because the term
self-care has been hijacked and commercialized by influencers, and
the whole wellness industry.
01:06:58:03 - 01:07:26:23
Erin Croyle
So take a minute to think what self-care truly is. According to the
World Health Organization. Self-care is the ability of individuals,
families, and communities to promote health, prevent disease,
maintain health, and cope with illness and disability with or
without the support of a health worker. It has origins in the
medical community. It has long been encouraged for professionals
involved in trauma.
01:07:26:23 - 01:08:04:20
Erin Croyle
So you think first responders, doctors, therapists, people really
on the frontlines of the toughest stuff that we're dealing with. It
has roots in the civil rights movement and the women's rights
movement, and it is critical for people with disabilities and their
caregivers. Poet, writer, mother, activist the late Audre Lorde
said, overextending myself is not stretching myself. I had to
accept how difficult it is to monitor the difference necessary for
me as cutting down on sugar crucial.
01:08:04:22 - 01:08:33:01
Erin Croyle
Physically, psychically caring for myself is not self-indulgence,
it is self-preservation. For those of us living as both parents and
caregivers, the old adage that life is a marathon and not a sprint
doesn't apply. Our lives are both a marathon and a sprint with no
built in water breaks. That's why we really have to look to taking
those breaks.
01:08:33:03 - 01:09:02:01
Erin Croyle
They say that comparison is the thief of joy. But for us, comparing
our lives to parents of neurotypical, non-disabled kids is a form
of truth that can set you free. Like it or not, our lives are
vastly different. My brother has two children who are similar ages
to my three children. His boys are 15 and 12. Throughout our entire
existence as parents, it's been really eye opening.
01:09:02:03 - 01:09:25:15
Erin Croyle
Like I have always kind of looked in compared. And in the early
years it was kind of hard because it hurt, because I was still
accepting and grieving that Arlo's life would never be the life
that you envision as a parent. When you have a kid, because most
parents don't envision becoming parents to a child with a
disability that will need lifelong support.
01:09:25:17 - 01:09:45:11
Erin Croyle
You just don't. It's not in it's not in most movies. It's not in
the fairy tales. It's just not. It's not what you imagine. And so
those early years, I was able to look and just kind of see those
developmental differences. That kind of stung. I was able to
observe how much work it took just to help my son walk, as opposed
to his kids just doing it.
01:09:45:13 - 01:10:17:20
Erin Croyle
And sometimes, I don't know, I felt a certain kind of way. Never
jealous, but just melancholy sometimes. And then I had another
kiddo who was a similar age to his second kiddo. And Amelia's is
now 12. And so I saw like, oh, I recognize that if you have a
neurotypical typically develop meaning, right? I use quotes with
those because those terms aren't great, but what other way are you
going to say it?
01:10:17:22 - 01:10:41:00
Erin Croyle
Do you have a non-disabled kiddo? Those milestones come naturally.
There's no early intervention. There's no physical therapist
showing you how to help your child move a certain way. There's no
speech therapist helping with feeding and building muscle strength.
Your kids just do it. And I still remember a meal starting to walk
at nine months. And I was just like, wow, that just happens.
01:10:41:02 - 01:11:03:19
Erin Croyle
So it got easier. But then there's little moments all throughout
where I see the differences. And so now, my brother's oldest is
starting to drive, and that's something I don't think I will ever
do. Even when we do go cart riding, Arlo likes to, have me drive
and we get a little tandem seat. And I'm so lucky that we have that
nearby where we live, because it's really cool.
01:11:03:19 - 01:11:32:02
Erin Croyle
And the person that runs the place is amazing. I highly recommend
finding amazing people who understand how huge little things like
that are, but there's things that we just take on naturally as
caregivers that are normal, that my brother or, you know, people
who have non-disabled, neurotypical kids just cannot fathom. So the
little things like, okay, they have the anxiety of teaching their
oldest to drive.
01:11:32:04 - 01:11:54:22
Erin Croyle
But then when he's able to drive, he's alleviating some of the
stress from my brother and and his wife where my nephew's going to
drive, places, he'll be able to pick up his his younger brother, my
other nephew, and their lives will get easier. And just just seeing
them when we hang out together, the things that his kids are able
to do independently, that don't come naturally to mine.
01:11:54:22 - 01:12:28:15
Erin Croyle
Because, you know, not only does Arlo have significant support
needs, but there's no divergence throughout my family. And so
things that really I'm still trying to understand that come along
with ADHD and neurodiversity and the whole spectrum of that.
Certain rules work for them. And so it's a really, really different
experience. That's where I think, considering an average day of a
quote unquote typical parent compared to the average day of a
primary caregiver is really important.
01:12:28:17 - 01:12:53:22
Erin Croyle
Think about the day of a typical parent, and you got to consider
the differences of ages. You know, toddlers are very different than
grade schoolers. And teenagers are going to need nudged out of bed
no matter what. But you know, the typical day average, right? Wake
up breakfast, head out to work or school or daycare,
extracurriculars, dinner. Chill out.
01:12:53:22 - 01:13:19:02
Erin Croyle
You know, maybe go to bed. So the add ons for families without that
extra stuff might be an annual well visit, the dentist appointment,
occasional sick visits, things like that. Right? Consider an
average day of a parent who's also a primary caregiver. You know
you're waking up, but you've probably also been woken up throughout
the night. You have to help dress and feed your children.
01:13:19:05 - 01:13:43:10
Erin Croyle
You're going to have to help with hygiene and brushing teeth.
Sometimes there's toileting. You're helping with medications, and
then there's work, school, daycare. Maybe there's early
intervention or therapies that you're either taking them to or
bringing people in the house. There's extracurriculars, but a lot
of times that takes extra effort and extra paperwork and extra kind
of collaboration with whoever the coach or teacher, whomever
is.
01:13:43:12 - 01:14:15:13
Erin Croyle
Then you've got dinner and feeding the children more hygiene
assistance, medications, maybe nursing level of care, bedtime
routine, and then you've got other add ons there. You've got
appointments with specialists and IEP meetings and paperwork and
Medicaid meetings and homework assistance and behavioral support
and dietary needs. Emotional regulation, nursing level care. In
some cases, the interruptions we face on a daily basis are
real.
01:14:15:15 - 01:14:38:08
Erin Croyle
We're so used to them, but they don't happen for a lot of other
parents. We don't have the same amount of hours in our day yet. We
try to function and in many cases are expected to function and keep
up as if we do. And let's not forget the financial hit that so many
of us take as caregivers.
01:14:38:10 - 01:14:58:21
Erin Croyle
Sometimes we can't work because even if our kiddos in school, it's
still kind of a full time job. I mean, I think about how many calls
I get about my children needing assistance at school. I've got to
be ready to be interrupted multiple times a day. It doesn't happen
every day, but there are flare ups throughout the school year where
it might.
01:14:58:23 - 01:15:27:14
Erin Croyle
So having a flexible job or taking on part time or flexible work, a
lot of times our earning potential takes a hit and that puts us on
a lower earning trajectory for life. Even those of us who do work,
and work full time. We're either doubling up when we get home,
burning the midnight oil for house stuff and other stuff, or we're
spending a whole lot of money on the other things, like cleaning
services and lawn care and whatnot.
01:15:27:16 - 01:16:01:24
Erin Croyle
Or take away because we don't have time to cook dinner. It all adds
up and it all creates these really different life experiences.
Others don't realize how different our lives are. One of the
biggest obstacles to self-care for caregivers are the expectations
put upon us by those around us, or just ourselves. Take an
inventory of your life and recognize what is doable and what's
truly unrealistic.
01:16:02:01 - 01:16:32:24
Erin Croyle
A really good analogy. An equation I like to think of frequently.
And I want to thank the Washington Post advice columnist Carolyn
Hax. I think it might have been a reader I saw this years ago in
one of her columns, when I had time to read it. Happiness equals
reality minus expectations. Stop expecting so much of yourself and
just live in the reality you're in and recognize it.
01:16:33:01 - 01:16:58:11
Erin Croyle
Another thing that really has helped me, because I am so hard on
myself, is really looking at why I can't get it done. What I like
to use is, if you've seen the movie or read the book, and with my
own neurodivergent, it's it's hard to read a book. So I'm going to
net. I've only seen the movie about a boy with Hugh Grant, which,
by the way, Hugh Grant told A resurgence in my House, heretic was
such a good film.
01:16:58:11 - 01:17:30:24
Erin Croyle
Me and my 12 year old loved it. So seeing the evolution of Hugh
Grant as an actor is has really been kind of fun. And so that's
just a fun side tangent, but the movie about a boy came out, I
don't, I think in maybe in the early aughts. Right. The 2000 maybe.
I'm not sure. And in the film version, Hugh Grant is a wealthy
bachelor living off the royalties of his dad's famous song, and he
waxes on in this pretty funny sequence about how he breaks his
daunting day into units and his units.
01:17:30:24 - 01:17:59:20
Erin Croyle
Each unit is 30 minutes in it, he said. Taking a bath, one unit
watching a TV show, one unit web based research, two units
exercising, three units carefully disheveled hair at a salon, four
units. And that really resonates with me because I sometimes think
about when my son will refuse to go into school or refuse to get
out of the car.
01:17:59:22 - 01:18:20:13
Erin Croyle
It doesn't seem like it takes a lot out of my day, but sometimes
that's an entire unit, or between the amount of time it takes for
me to reregulate myself. It's it's 30 minutes one unit or the other
day, my my daughter Maya, who's ten, forgot their, trombone, even
though we have calendar reminders and I forgot it to.
01:18:20:15 - 01:18:39:12
Erin Croyle
And so I walked them to school and came home and was like, oops. I
got to get that right back there. Well, there goes a unit, right?
Another unit. Just by getting in the car, getting the trombone,
taking the school, dropping it off, saying hi, explaining what
happened. Getting back in the car, getting home and re re setting
myself.
01:18:39:14 - 01:19:02:22
Erin Croyle
There's a whole unit gone just because someone forgot a trombone.
And maybe it doesn't seem like a lot like, no big deal. It happens
all the time. You got to let it go. But when we break our day into
units and think about it in that way, it really sheds light on why
we can't get it done. And so this will be in the show notes.
01:19:02:22 - 01:19:30:15
Erin Croyle
But to just try to visualize if a unit is 30 minutes and a day is
24 hours, that's 48 units. Let's go ahead and break this down okay.
Let's be generous and say that you get seven hours of sleep or
attempting to sleep, like attempting to sleep. I know that we all
burn the midnight oil or have kiddos that might need care
throughout the night, but let's just say seven hours, which is not
enough, by the way.
01:19:30:18 - 01:20:00:23
Erin Croyle
Let's be real. But it's it's realistic. That's 14 units. That
leaves us with 34 units. Okay. If we are going to look at personal
hygiene for just ourselves in toileting, say that's one unit
throughout the day. If we have enough time to actually take a
shower and get dressed and maybe like, comb our hair a little bit,
let's say that's another unit, meal prep, let's go a little bit
skimpy there and figure 30 minutes per meal, not including
snacks.
01:20:00:23 - 01:20:21:22
Erin Croyle
But if you kind of tack that in, that's three units total of meal
prep, right. If we're lucky enough to sit down and eat three meals
in a day, hopefully that's a, you know, another three units, maybe
meal cleanup if you're cooking and getting stuff ready, that is two
units easily. I my gosh, it never ends right. Basic chores.
01:20:22:03 - 01:20:49:02
Erin Croyle
That is average of two units a day. I would say that's 30 minute
units, chores, two units an hour a day, and again, think about the
average laundry, cleaning up, picking up, yard work, just basics.
It adds up basic correspondence. So texting, emails, phone calls.
That's about an hour a day for most of us. And that's just for
typical folks.
01:20:49:04 - 01:21:15:16
Erin Croyle
Now when you tack on parenting and caregiving duties, you're
helping with your child's hygiene, which can range from total care
to more general support. Here's the thing, though even with quote
unquote typical children, this takes reminders and prodding well
into their teen years. If you, disability and or neurodiversity
into the mix, you might be trying visual schedules or augmentative
communication or whatever.
01:21:15:18 - 01:21:42:15
Erin Croyle
So hygiene support, that's easily two units toileting. Let's say
that's one unit. And we all know that can be so different depending
on family and age of the children and all of that, which is why I
have four units for behavioral supports. This is a generic category
for caregivers that encompasses so much four units is the
equivalent of two hours a day, and that's the average.
01:21:42:17 - 01:22:06:15
Erin Croyle
Think about things that might be tougher in your family that others
would probably be clueless about. In my household, transitions are
really tough for my oldest, most days, even getting him to go to
activities he enjoys requires a gentle full court press filled with
humor and patience. Any time I think about leaving the house with
him, I build an ample extra time.
01:22:06:21 - 01:22:30:23
Erin Croyle
We're talking about 30 minutes at least, not counting loading the
car and taking care of all of the things those 30 minutes just to
ease him into it, to get him out the door, and includes building
things like a support circle full of folks who really get it, like
finding a stylist who's kind and understanding and willing to
adjust their schedule if Arlo just isn't having it.
01:22:31:00 - 01:22:58:15
Erin Croyle
This stuff is hard, y'all. It is. Pull your hair out. Frustrating
when your kiddos refuse to do things. Surrounding yourself with
people who can laugh and cry with you through it, who either get it
because they're in it to in their own way, or just truly know how
to practice empathy. It makes all of this more doable, but it also
takes time to build that which is part of the four units of
behavioral support.
01:22:58:17 - 01:23:24:15
Erin Croyle
Now, with my youngest assistance with homework or really any on
preferred activity takes a huge effort. The challenges that come
with neurodiversity are for real, and they come with their own set
of unique skills that you need to develop. And in many ways, it's
harder for folks to see it and realize it. Because kiddos who are
neurodiverse, they present as typical, but they don't.
01:23:24:19 - 01:23:46:17
Erin Croyle
They don't function that way. They need a lot of understanding and
patience and time and kindness and firmness. And honestly, it's a
mix I just truly don't fully get yet. And I'm working on it and
it's hard now. Another example is my middle guy, who's 12, and I'm
lucky enough that he still enjoys hanging out with me for the most
part.
01:23:46:19 - 01:24:18:11
Erin Croyle
And we love shooting the breeze about Minecraft or baseball, or
just watching movies together, making sure that each of my children
get the attention and affection they need in their own specific
way. As much as I love doing it, it's work. It's the greatest job
I've ever had, don't get me wrong. But when children have complex
needs, which can range from disabilities that require anything
from, again, total care to high support needs to neurodiversity, to
anxiety or mental health challenges.
01:24:18:13 - 01:24:57:07
Erin Croyle
It requires parents to tap into skills that many of us are not
equipped with, nor do we have a community that can show us. And
that's why talking about this stuff is so important. We need to be
honest and real about the challenges we face. When you're
supporting a child or children who are living in a world that's not
designed for them, or they're functioning in spaces that are filled
with people unwilling to consider or accommodate their needs, it
can be a lot, and it takes a lot of time to break down those
barriers and give these kids what they need.
01:24:57:09 - 01:25:26:17
Erin Croyle
And when we're spending that time with our children in meaningful
ways, trying to fulfill their developmental and emotional needs,
other things go on the backburner, like self-care, even little
things like bringing a forgotten instrument to school that can end
up taking an entire extra unit when all is said and done. And for
me, and I'm sure others, those small but frequent interruptions
wreak havoc on my day.
01:25:26:19 - 01:26:08:11
Erin Croyle
And that's partly due to my own neurodiversity. If I get
sidetracked, it's really hard to get back on task and I get
sidetracked all the time. So yeah, behavioral supports it is a lot.
Caregiver correspondence is another thing that averages for units.
Think IEP meetings and the preparation that comes with it. That
includes 5 or 4 meetings, doctors, specialists, messaging on my
chart, chasing down lab reports, filling out the piles of paperwork
required for everything from waiver services or just
participating.
01:26:08:13 - 01:26:40:09
Erin Croyle
It's all that regular stuff, plus so much more, because the world's
just not accustomed to helping people who have additional needs.
It's the caregiver stuff. I don't know about you, but I can easily
spend a full workday each week managing medical bills, insurance,
paperwork, emailing people from school care team, whatever, etc.
etc. etc. and then I can do it again the next week and the next
week.
01:26:40:11 - 01:27:12:17
Erin Croyle
It is so much. There's no time for us to even line up the support
we need to free up time. The decks are stacked against us here.
It's like treading water to keep from drowning, and the
metaphorical life preservers thrown at us are impossible to reach
because we're too busy getting through everything else. Those life
preservers are just a few inches away, and just when we think we
can reach it and and line up the support we need, we have to swim
in the opposite direction to handle something else.
01:27:12:19 - 01:27:46:20
Erin Croyle
It is relentless, and we need to understand that and honor that and
recognize that. Because it's not going away. Medical needs moving
on. I put one unit, but for many of us, we all know it's way more
than that. And finally, two units for transportation,
extracurriculars and those, you know, basic transitions. This is
that soccer mom territory that easily averages an hour a day.
01:27:46:22 - 01:28:00:15
Erin Croyle
Now, if you total all of these units up, it's 42 units. That's 42
units out of 48.
01:28:00:17 - 01:28:38:08
Erin Croyle
That means we have six units left in a 24 hour cycle. That's three
hours out of 24. That's free. That's all. And this only accounts
for family and caregiver duties. This isn't really taking into
account our jobs or all the other things that we're managing. And
so if we're trying to be the caregiver that our children need, we
only have three hours left most days.
01:28:38:10 - 01:29:04:14
Erin Croyle
That's the reason we can never get it done. It's impossible. It is
literally impossible to get it all done. So what are we supposed to
do? Legit? Let's scoff at the idea of self-care, because we can
barely get through the day. And folks, instead of seeing this, they
just say, take time for ourselves. You need to take time for
ourselves.
01:29:04:20 - 01:29:36:15
Erin Croyle
How are we supposed to take time for ourselves when there is no
time? And this is what I'm learning. My son is going to be 15 this
year, so it's taken a while and I'm still learning how to practice
what I preach. First off, say no. We need to start saying no. We
cannot do the impossible. So let's stop pretending that we can keep
up and do all of the things that our parenting peers who also
aren't caregivers can do.
01:29:36:17 - 01:30:05:17
Erin Croyle
Skip the PTA meeting. Don't sell the Girl Scout cookies. Don't
coach the team. Say no. If it's Teacher Appreciation Week. You know
what? Shoot off an email saying how important these teachers are
and call it a day. Let the teachers know how much you appreciate
them in your own way. That honors yourself. And that's the next
thing. Honor yourself, okay?
01:30:05:19 - 01:30:32:06
Erin Croyle
Acknowledge the hardships. We don't have to explain ourselves, but
once in a while I think that we should. If other people have no
idea what it's like to live as an unpaid caregiver to a child with
high support needs, how will they ever know that we're drowning?
It's a really weird place because I hate doing this and I don't
want to complain about my life.
01:30:32:08 - 01:31:04:14
Erin Croyle
But if we don't make it clear that we need more help and empathy
and understand, other people won't know if we pretend everything is
hunky dory, everyone's going to think everything's hunky dory.
Think of ways that let people in while honoring and respecting your
child's autonomy. So the way I like to do this is I will frequently
remind folks that my child is not, and never has been a burden and
never will be a burden.
01:31:04:16 - 01:31:29:11
Erin Croyle
The burden are the societal constructs that make it so hard to be
in spaces when you have a disability, because of the lack of
accessibility and understanding. And so in part of this whole
practice, what I preach thing, I have started even trying to do
this more. I have always stressed that disability isn't a bad
thing. It's a natural part of the human condition.
01:31:29:13 - 01:31:50:17
Erin Croyle
I talk about disability openly whenever is necessary, but lately
I've been realizing that maybe I need to take it to the next level.
Because if I miss a meeting, maybe folks need to know it's not just
because I'm mom, right? Especially as women. People are like, oh,
she's a mom. So, you know, I get that it's hard being a mom.
01:31:50:19 - 01:32:21:02
Erin Croyle
No, it is hard being an unpaid caregiver in a world that doesn't
really give, you know, what about people with disabilities? Let's
be honest. It's true. And like I said, it, accessing the services
that are available is a full time job in and of itself. Even though
no one needs to know why I'm going to miss a meeting if it's
something outside of the realm of my job.
01:32:21:04 - 01:32:52:06
Erin Croyle
So for a good example, and I don't like to talk about this often,
but I serve on my local school board and it's an honor. And I love
the work. But my son has been through some stuff, and there's been
some really heavy medical components to his disability that have
that have been devastating. And that, force me to face his
mortality and I've had to deal with some heavy stuff.
01:32:52:08 - 01:33:16:12
Erin Croyle
And I think a lot of us do have to deal with heavy stuff
personally. And because we know that it's no one's business, we
don't say anything. But explaining that. Medically complex and
medically fragile people. When you care for them.
01:33:16:14 - 01:33:49:03
Erin Croyle
It's hard to think of how to explain to someone what it's like to
walk through this world thinking that you're going to lose your
child in a few months or a few years. And I think that people can
relate to that idea. And if you don't tell them that, that's
something that is a tightrope that you walk from time to time as
you figure out what the next medical anomaly is.
01:33:49:05 - 01:34:04:24
Erin Croyle
You're walking around and your soul is being crushed
simultaneously, and you're expected to function in a way that is
normal and you can't.
01:34:05:01 - 01:34:31:19
Erin Croyle
It's tough because you don't want to have to talk about it because
of how painful it is, and because you're putting yourself out there
and you're incredibly vulnerable. And in some spaces, you're
carrying this weight of the world on your shoulders while also
having to maintain composure, trying to figure out ways to share
that, I think is important.
01:34:31:21 - 01:35:08:10
Erin Croyle
Being a little more real about how challenging certain aspects of
our life are, while maintaining that fine line of. Privacy. It's
really hard. And it's also something that is very necessary. And
I'm still dealing with how to figure that out and respect my son,
but also let people know that they need to respect the fact that if
I'm not fully present, it's for a darn good reason.
01:35:08:10 - 01:35:31:03
Erin Croyle
Right? And I think that I think that a lot of times people see a
caregiver and they just equate it to a stay at home mom or a stay
at home dad or whoever, and they don't realize that we are dealing
with some stuff, that it's truly unimaginable what we're carrying
with us every day. And it's it's our normal.
01:35:31:05 - 01:36:04:04
Erin Croyle
We live in this completely different level of anxiety that other
people, I don't think can fathom. And I think we need to start
figuring out how to share that, because then maybe people will have
a little more space and understanding and be allies in our
advocacy. Guy that just got really heavy. I, I'm going to
transition here and also say that we need to also honor our self by
not listening to other people.
01:36:04:06 - 01:36:36:07
Erin Croyle
This means you have to recognize what self-care is for you. A good
example that I have really figured out through therapy and, and,
and understanding my neurodiversity, is that folks like to say to
me to let it go, oh, don't worry, it's just a messy house. Or let
this go. That is not possible for me. It causes actual pain for me
to live in chaos, and some order is necessary for my children
because of their neurodiversity.
01:36:36:12 - 01:37:06:11
Erin Croyle
So self-care for me is making sure my house is clean. It is putting
away my kids laundry for them because they need some order in their
own rooms. It's figuring out what works for you and what works for
your family unit. So think about your needs to feel physically and
mentally stable even. And I think it's important to recognize what
true self-care is.
01:37:06:13 - 01:37:41:20
Erin Croyle
Like I mentioned earlier, it is not going to get a manicure or
going get a massage. In its purest form. It's taking care of
yourself. We're so busy taking care of our loved ones that will
miss a mammogram or skip a well visit, but those things are
essential. That stuff is self-care. So is taking a shower. So is
eating something, or drinking enough water, or getting exercise, or
talking to a friend.
01:37:41:22 - 01:38:10:05
Erin Croyle
Those pure forms of self-care are essential. Another thing we need
to do for ourselves is to just take 5 or 10 when our days are jam
packed, you got to think about ways that you can fit self-care into
it naturally. So I find myself doing squats while I'm in a waiting
room. Or if I'm waiting at pick up, I do push ups on a bench on a
playground.
01:38:10:07 - 01:38:36:20
Erin Croyle
I keep nail clippers and floss in my car, along with hand sanitizer
and hand wipes. Because, yo, sometimes just flossing isn't
possible, but it's necessary. Just walk around the block. If you
can answer an email on your phone while you're in a waiting room or
wherever you can fit it in, pay your bills online. If you're in a
meeting where you don't need to pay 100% attention, just get those
little things done.
01:38:36:22 - 01:39:06:05
Erin Croyle
Take 5 or 10 minutes to just do them. I wear workout clothes almost
everywhere I go. I wear tennis shoes everywhere I go. I have to do
that partially because of my son's allotment of shoes. It became a
habit. But then I realized that my comfort is more important. You
have to do. You make your life functional in a way that you can
figure out how to fit self-care in, instead of doing everything for
others.
01:39:06:07 - 01:39:29:17
Erin Croyle
Yes, we don't have enough hours in the day, but what little tweaks
can you make where you can pick a few minutes to do things you
need? Because our physical fitness, it's not about what we look
like. We know we have to take care of our loved ones. We don't get
to become frail. We have to maintain our strength because we have
to care for someone, and we likely will into our old age.
01:39:29:19 - 01:39:53:20
Erin Croyle
What can we do so we can live long enough to support our kiddos and
feel good in our bodies doing so. It's also about embracing moments
of joy. This stuff is hard. Joy and happiness. It's not a constant
for anybody. Those fleeting moments of joy, man, just grab on to
them. When my kiddos hug me, I soak it in.
01:39:53:22 - 01:40:11:01
Erin Croyle
I can't tell you how many meetings I'm late for because my kiddos
want one more hug, and there's no way I'm going to say no to that.
They're 14, 12, and ten. Those aren't going to have a much longer
if they ask for a hug. I'm going to be five minutes late. I'm going
to go get that hug.
01:40:11:03 - 01:40:37:09
Erin Croyle
If they're dancing, I dance with them sometimes, man, I got to put
earplugs in and dance with them because it gets loud in my house.
But the joy and smiles on their faces are everything and it lifts
me up. If a friend wants to go on a walk and maybe gossip or
whatever, I do whatever I can to push off other stuff because I
don't get much adult interaction.
01:40:37:11 - 01:41:07:00
Erin Croyle
I could use some catty banter or hear about whatever TV show other
people are able to watch that maybe I can start watching. We need
it. We need to think about other things other than these daily
struggles we're living in and indulging in brain candy. I know
friends that watch Real Housewives and, as much of a news junkie as
I am, I turn off the news and I find watching shows like Ted Lasso
to be its own form of therapy.
01:41:07:02 - 01:41:33:18
Erin Croyle
Lately, we've been watching Parks and Rec, and it's just really
joyful and sometimes funny and silly, but also almost always
uplifting and and hopeful. And I need that because the rest of the
world doesn't feel that way. I know I said that it was important to
recognize what true self-care is, but also buy the darn latte. Just
get the mammogram first, right?
01:41:33:20 - 01:42:01:03
Erin Croyle
If you can swing it, get a massage, get a manicure, get a pedicure.
Even better, hire a cleaning service. Do whatever you can to make
your life easier. Most importantly, we have to give ourselves
grace. We only get one chance at this life of ours, right? If you
miss a deadline or have to cancel a meeting, let it go.
01:42:01:05 - 01:42:26:11
Erin Croyle
I remember early in my career I was so focused on getting ahead and
climbing the ladder. I struggle with whether I should take time
off. I almost missed my brother's wedding because I didn't want to
miss the launch of the National Geographic Channel. My dad would
always say, when you look back on life, what do you think would
matter more that you had perfect attendance, or that you got to
spend a weekend with your family?
01:42:26:13 - 01:42:45:19
Erin Croyle
And he's right. My dad was the guy who, when I was, I was such an
overachiever my whole life. Right. So in high school, I didn't want
to do senior skip day. And he was like, Erin, come on. And he took
me and a friend to some Amish restaurant because I grew up in
Northeast Ohio and it was still is Amish country, right?
01:42:45:19 - 01:43:07:07
Erin Croyle
So I was Mary Yoder's or something, literally. That was the name of
the place. And I still remember that and look on that so fondly,
because not only did I get a chance to go to breakfast with my dad,
I got taught one of the most important life lessons. I remember
spending that time with my dad and he's not here anymore.
01:43:07:09 - 01:43:36:09
Erin Croyle
I don't regret missing school. Have you have you ever regretted
missing a meeting right now? I might regret missing a, meeting that
I had a month ago. But when we shift and look at stuff through a
five year lens or even a one year lens, it's typically not meetings
or work events that we regret missing. It's that band concert that
my son had that I missed.
01:43:36:11 - 01:44:07:13
Erin Croyle
It's spending time with people that I love that aren't here
anymore, when our days are nonstop and our lives are nonstop, and
those moments of making a decision of what needs to come first and
what we need to prioritize, try to take a step back and use that
lens of what your future self would want to see you do, and use
that to guide you.
01:44:07:15 - 01:44:39:03
Erin Croyle
Cokie Roberts, journalist who I interned under actually back way
back in the day. Right. I was at this week with Sam Donaldson and
Cokie Roberts. She said to remember that your parents are only old
ones, and your children are only young once. Think about all the
little things that matter. Give yourself grace. And breathe.
01:44:39:05 - 01:44:58:17
Erin Croyle
Thanks for listening. Be sure to share, review, subscribe, like,
follow or whatever it is you need. So you get a ping when the next
episode drops. This is the Odyssey Parenting. Caregiving.
Disability. I'm Erin Croyle. We'll talk soon.