“I was doing what everybody told me to do… he can make eye contact and have a conversation—he can’t be autistic.”
Today, certified Master Life Coach and writer Karen Kossow gets real about the three-year journey to her son’s diagnosis—and what it means to parent neurodivergent kids while discovering your own neurodivergence. As part of the sandwich generation, Karen is supporting her children, noticing patterns in older family members, and learning herself—often all at once.
This conversation is practical and deeply compassionate. Karen reframes self-care for parents who can’t just “get away,” sharing five-minute vagus-nerve resets, gratitude practices that soften the stress response, and thoughtful choices around food and substances. We also talk about the ache of isolation, the sting of judgment, and how community changes everything—because you’re not a “bad mom”; you’re doing everything you can for this child.
For families navigating a new diagnosis, Karen offers honesty and hope: grief is real, development doesn’t stop, and strengths-based support—with guidance from autistic adults—opens new paths forward.
Connect with Karen and her Self-Care Support Squad: karenkossow.substack.com
Thank you for listening to Hope Comes to Visit. If this conversation helps, follow the show, share it with someone who needs hope today, and leave a review - it helps others find their way to these conversations.
New episodes drop every Monday, so you can begin your week with a little light and a lot of hope.
For more stories, reflections, and ways to connect, visit www.DanielleElliottSmith.com or follow along on Instagram @daniellesmithtv and @HopeComestoVisit
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Episode Transcript
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Speaker 1 (00:00):
I was doing what everybody told me to do right.
Speaker 2 (00:02):
I was following all the rules and he's talkative and
he's outgoing and he can makeeye contact and he can have a
conversation with you.
He can't be autistic and ittook us about three years to
finally get an accuratediagnosis for him and in that
time, you know, everyone justlooks at you like you're a bad
mom and I'm over here like Iliterally am doing everything I
(00:25):
can for this child and everyoneis judging me and saying that
I'm not enough.
Speaker 1 (00:39):
Welcome to Hope Comes to Visit.
I'm Danielle Elliott Smith.
Hope Comes to Visit is morethan a podcast.
It's a gathering place.
It's a place for stories andheart conversations, and a place
that we hope allows hope tovisit just right on time.
Today's guest is someone I amdarn excited for you to meet.
Karen Caso is a friend, a newfriend, a writer, a certified
(01:03):
Master Life Coach and aneurodivergent mom of two
autistic kids.
After years of navigatingcaregiving, homeschooling and
burnout, karen became deeplycommitted to helping overwhelmed
parents build resilience andfind self-care that works for
their unique lives.
She shares honest stories andgentle support on her sub stack.
(01:23):
She shares honest stories andgentle support on our sub stack,
the self-care support squad,creating space for parents to
feel seen, supported and alittle less alone.
Let's take a quick moment tothank the people that support
and sponsor the podcast.
When life takes an unexpectedturn, you deserve someone who
will stand beside you.
St Louis attorney Chris Dullyoffers experienced one-on-one
(01:44):
legal defense.
Call 314-384-4000 or314-DUI-HELP, or you can visit
DulleyLawFirmcom that'sD-U-L-L-E LawFirmcom for a free
consultation.
Karen, thank you so much forbeing here with me.
Thank you for having me.
I'm super excited.
I am really excited to havethis conversation.
(02:06):
So this is for me.
I've had lots of conversationson the podcast about, about loss
and about difficult times, andI I love that we're going to
have a conversation about life,about what it looks like to, to
live authentically, to addresslife as it happens and to to
(02:31):
help other people, and I I wasso drawn to your story when you
first reached out, so I I wantto welcome you.
So thank you for being here,for reaching out and for taking
the time with me today.
Thank you.
Speaker 2 (02:49):
Yeah it's, you know it's.
Um, I think a challenge thatmore and more folks are becoming
aware of neurodivergence ingeneral is more and more kids
are diagnosed.
Parents are starting to realizethat they themselves are also
neurodivergent.
Um, and we're kind of in thatsandwich generation of we're
navigating supports for our kids.
It's really difficult and thenwe're kind of hitting
(03:10):
middle-aged and realizingthere's something going on for
us as well, and then, with thereframe of looking back at your
whole life and seeing why someof the challenges you had were
so challenging, then alsolooking forward to being like
this is why I have some of thefamily challenges that I have
with my elder relations and myparents and maybe my
grandparents, aunts and uncles,and it's a really interesting
(03:35):
time to be going through thisprocess of learning and growing
and adapting.
And I've found community isreally hard for a lot of people
in my position to maintainbecause we have so much going on
in our lives and making spacefor people to have that
community is really important tome and I've seen tremendous
(03:56):
changes in people's lives andhow they relate to themselves
and their children and theirparents and their families once
they have the tools to be awareof the challenges they're facing
and how to deal with themconstructively.
Speaker 1 (04:07):
You know it's interesting.
I feel as though you've somehowbeen sitting on my shoulder for
the past few weeks when youtalk about the middle age and
the gap and the kids and theparents, the gap and the kids
(04:30):
and the parents.
I recently moved my dad fromFlorida to St Louis and I'm very
firmly in that space betweenkids who have gone to college
and recently coming to termswith my own diagnosis, which I
had no idea my entire life, andpaying such close attention to
(04:50):
my dad and thinking, wait aminute, when did that?
Speaker 2 (04:58):
come from.
Speaker 1 (05:00):
And once I had my diagnosis, I called my daughter
and I said hey, and she said Ithink I do too, and I said I'm
pretty sure you do, but it'sjust so interesting because
we're able to have theseconversations so much more
openly now.
So what first prompted you tocreate this community?
(05:23):
So let's start there.
Speaker 2 (05:27):
Sure, I have been building community for years
it's kind of what I do and I hadbuilt a homeschooling community
and then I had worked withother autism parents in Idaho,
where I live, and it just feltlike everyone was saying they
wanted self-care and everyone'ssaying, oh, it's so hard.
And when the pandemic hit, oursituation was unique because we
(05:50):
went from having between 30 to50 appointments every week
between me and the two kids tohaving nothing, and we had
already been homeschooling, sothem being at home wasn't a
change for us.
Suddenly, I had all this spaceand I didn't know what to do
with it and I am not a personwho does well without something
to do.
So I just started diving intolearning about copywriting and
(06:14):
online businesses and coachingand working for other folks, and
it gradually morphed into Iwant to use the challenges I
faced and the tools I'vediscovered to overcome them, and
I want to make self-caresomething that is doable for
parents If they can't leave thehouse, if they don't have
childcare, when they're justfaced with extraordinary levels
(06:38):
of stress that no one personshould have to be subjected to,
and when they're in a positionwhere they well, this is the
thing I like to say you canleave, there is nothing stopping
you, you can make that choice,but it feels like you can't
right.
What does society say about aparent, especially a mom, that
walks away from their children?
But it's that honest awarenessthat it is a choice and you do
(07:03):
wake up every day and you chooseto parent them and you choose
to do what you can to be thebest version of them, or
yourself for them, rather, andthis concept that our self-care
doesn't look like what we hearmainstream self-care talk.
It's not bubble baths, it's notgoing to the spa.
I've never been able to take aweekend away with my girlfriends
(07:24):
.
I can, you know.
My kids are 11 and 15.
I'm lucky I get one night aweek out and about to, you know,
hang out with my mom friendsand trying to give people the
tools so that they're notstruggling as much.
And it's, you know, grownpretty well since then and I'm
excited to help support otherparents.
Speaker 1 (07:46):
So then, what does self-care look like?
So if we're, if we're boilingit down and we're saying, ok, so
we're not high in the sky,we're not, we're not elitists,
we're not, you're not.
You don't have the luxury ofbubble baths and a master chef
and no one is coming to do foryou.
Yes, what do pockets ofself-care for the real world
(08:11):
look?
Speaker 2 (08:12):
like.
For me it's doing some vagusnerve care, which are some
exercises.
It's as simple as laying downon the floor and putting your
legs up the wall.
Do that for five minutes.
That totally helps to resetyour vagus nerve and to sort of
help with some of the physicalanxiety sensations that a lot of
parents have to navigate.
(08:32):
It's helping your body to resetafter you've supported your
child through a meltdown, whichis a very stressful situation
For me.
I do a lot of gratitude.
Every time I get really angryor frustrated, I stop myself and
say what are three things I canbe grateful for right now?
The more you do that, it reallyretrains your brain to sort of
(08:54):
focus on those types of thingsso that in the moment, instead
of your brain automaticallygoing to the stress response
after a while, you habituateyourself to look at the things
to be grateful for and it justhelps to reset your brain.
I make really healthy choiceswith my food and I have not been
(09:15):
able to drink for a very longtime.
Um, just with the way my bodyprocesses alcohol, we are not
friends, um, and it's.
Speaker 1 (09:22):
I'm sober, so I'm in the same category, right?
So I?
Speaker 2 (09:27):
oh my gosh.
It is a coping mechanism.
I know a lot of parents fallinto during stressful, stressful
seasons of life and when you'reneurodivergent or parenting
neurodivergent kids, you knowthat stressful season of life
sometimes never ends Right.
So it can just become reallyeasy to sort of choose those
numbing behaviors is how italways felt for me and to make
(09:49):
different choices things thatlet you show up the way that
your kids need you, the way thatyou feel best about being in
the universe, in the world as aparent.
And, again, things that you cando even if you can't get away
from the kids, even if you can'tleave home, even if you don't
have support or backup orrespite.
Speaker 1 (10:13):
It's so interesting when you talk about gratitude,
because gratitude has alwaysbeen a huge focus for me and I
am very aware one of the thingsthat I always suggest to people
about gratitude is that we don'tautomatically go okay, shelter,
food, that we truly think aboutsome of the things that put a
(10:51):
smile on your face because it'sfresh flowers, or the fact that
I could feel my kitten curled upinside my knee this morning
when I woke up, or that firstsip of coffee when I'm waking up
, or the fact that my alarmwasn't obnoxious when it went
off.
Whatever it is that I happen toreally feel grateful for, and
(11:16):
when I am working with people inrecovery, I always talk about
gratitude, and it's funnybecause I talk about it so much
that people frequently give me ahard time in the.
Are you really that gratefultype of tone?
And I am, because it has longbeen a tool for me.
(11:36):
It has long been something thatI have had to focus on in order
to keep myself on the rightpath, and I think that it's like
you.
I've used it for so long thatit's by rote.
(11:57):
Now I write it down every day,but there are times when I have
to put myself in that placebecause otherwise I I'd be angry
.
Speaker 2 (12:14):
Like looking in a mirror.
Yeah, I get the pushbacksometimes too of how can you
really find things to begrateful for?
And once you start doing it,you realize there are so many
things to be grateful for andoften, if I you know, do a
social media post thankfulThursday.
What's you know?
One thing you're grateful fortoday?
You do get folks that say, oh,I'm grateful for food, I'm
(12:36):
grateful for shelter, and that'sa wonderful place to start.
Where I found like the reallygood juicy vibes are is with the
little things.
Like I'm grateful for my washerand dryer because it's really
wonderful to not have to dealwith dirty laundry going to the
laundromat or having to hangthings up on a line outside to
(12:58):
dry.
Right.
I am grateful that we have anew physical therapist who's
working with one of my kids andthe company they work for does
home visits, so I have one lessappointment I have to drive to
each week.
You know even the reallychallenging things in our life
and not everything.
I'm not one of those peoplethat says everything happens for
(13:20):
a reason and you have to find,and you have to find the meaning
in it.
Speaker 1 (13:24):
Right, I don't know that's actually one of my least
favorite phrases on the planetand if it's said to me when I'm
going through something, it is astruggle not to reflexively
punch someone in the face.
Through something, it is astruggle not to reflexively
punch someone in the face.
Speaker 2 (13:38):
So it's for me personally the way my brain
works.
I personally do like to findthe reason for me that I've gone
through a challengingcircumstance.
I would never put that onsomebody else.
I do.
It's one of the reasons why Istarted my business right,
Because I had always said thatthe challenges that we went
through when my kids wereyounger and they were pretty
extreme that it had to be forsomething.
(14:00):
It had to be for a purposegreater than you know.
I'm air quoting here, but justmy personal growth or just air
quotes getting the kids throughit right.
I wanted to be able to use whatI had learned to help others
and to support other parents sothat they wouldn't struggle as
much and when you know your,your your kid's having a
meltdown, you're reallystruggling in that moment.
(14:22):
To be able to have that reflexof saying there is something
here to be grateful for.
You know, maybe it's that mykid didn't put a hole in the
drywall, right.
Or maybe it's that we did nothave to call the police or go to
the emergency room for support.
Today, even in the worstcircumstances, I try to reflect
(14:45):
gratitude to myself becausethat's how I process my way
through it, and I do see how forsome folks, that can be very
off-putting, but I know that itworks for me, so it's a tool
that I would share.
It helps you don't have to doit and I would never push it on
anyone, but it does make adifference, right, and in those
(15:07):
goofy little things that maybeyou don't notice.
Speaker 1 (15:10):
Well, and so there are a couple of things that you
said that I very much agree withthat resonate for me.
So one is that I don't everpush it on anyone else.
Right, I offer it as asuggestion, but I don't.
I recognize that anysuggestions anyone makes aren't
(15:31):
necessarily the right fit foreveryone.
Right, that's one of thebeautiful things about this
podcast, because we're talkingto so many different people on
any given day.
I recognize that talking aboutneurodivergence may not be the
right fit for someone today, butthere may be a portion of our
(15:52):
conversation where someone says,oh my gosh, I didn't know that
right.
Or I might be talking aboutgrief one day, or I might be
talking about writing the nextday, or I might be talking about
cancer the next day, or there'sjust little bits and pieces.
But even within, I was having aconversation with a woman about
a maternal her birth experience, and during that conversation
(16:17):
she said something that I had noidea about and I thought, wow,
now even that's an aha momentfor me, and maybe there's
someone listening to that whothinks, well, I didn't have that
exact experience, but I hadsomething similar and I didn't
correlate those two, and so myhope is that, as people are
(16:38):
listening, either they're goingto hear something that resonates
or it will trigger somethingelse, or they'll hear and
they'll think someone else mightknow this might resonate with a
friend and they can pass it on.
But I don't ever want people tofeel like this is the only way
we can do this, like if you arein recovery, the only way is AA.
(17:03):
If you are in recovery, theonly way is meditation or prayer
, or I want people to know thatthere are options, which is
similar to what you were sayingabout the everything happens for
a reason.
I don't believe everythinghappens for a reason.
I do believe for me that I'msupposed to figure out.
(17:26):
What am I supposed to learn andwhat am I supposed to do with
this?
Because this has clearly beenpainful and I know that when I
go through something painful, Ichange, like it molds me in some
(17:48):
way, and what is the moldingdoing to me?
How am I being refined and howam I changing, hopefully for the
better, because the version ofme right now wouldn't be who I
am right now if I hadn't beenrefined in all the ways that I
have over the course of theseamazing and challenging
(18:13):
experiences.
Speaker 2 (18:15):
That's such a good way of looking at it, and I
think I have a similar viewpoint, and it's it's all about having
a big toolbox Right With allthe different things in there,
and you have to find what worksfor you, and I think, whether
that's self-care, whether it'swith sobriety which to me seems
like a type of self-care Right,and it's it's a challenging road
(18:36):
and you've got to be mindful ofwhat you're doing and how
you're feeling and how thingsare going for you.
And to me, parenting is similaras well, where you have a
commitment to these humans andyou know you have to do the best
for them, and part of that isshowing up the best way you can,
and that's about the choicesthat you make and the challenges
(19:01):
that you face and how yourespond to them.
So I just I like having a lotof tools in my toolkit.
Speaker 1 (19:08):
What do you think of your life experiences?
Has been the sharpest tool foryou.
Speaker 2 (19:22):
Oh, that's my kids, um it, they, um and again, I
don't go into like superspecific details about them, um,
I will say that they are atremendous mirror, right, both
of them in their unique waysbecause, uh, they have a very
long list of diagnoses and thetwo of them and the same
diagnoses and I actually have alot of the same diagnoses as
well.
But it is so amazing to me howcompletely different those two
(19:44):
kids are from each other.
Oh my gosh, it's wild, and itjust seems I go a little woo for
a second.
I'm a gemini, right.
So two halves of personality,like one's yin, one's yang, and
like the two of them combined,just it's my whole personality
come out.
That's so funny, it's wild.
(20:06):
And as my, as my teenager getsolder and he settles more into
what I lovingly refer to as hisgrumpy old man persona, he is
just turning out to be verysimilar to me.
And when I look back at thechallenges we had when he was
younger because in reality I canlook back now and say it's
because we do have the samepersonality it's just I didn't
(20:28):
have all the information aboutmyself and I didn't understand
the operating system that mybrain was working on as an
autistic person, as aneurodivergent person, as I was
living through a lot of traumain the moment, but also growing
up as an undiagnosed person.
It really all makes sense nowand I can look back now and see
(20:53):
how I made things harder formyself in the way that I was
parenting him, but I was doingwhat everybody told me to do,
right, I was following all therules and he's talkative and
he's outgoing and he can makeeye contact and he can have a
conversation with you.
He can't be autistic.
And it took us about threeyears to finally get an accurate
(21:14):
diagnosis for him and in thattime, you know everyone just
looks at you like you're a badmom and I'm over here like I
literally am doing everything Ican for this child and everyone
is judging me and saying thatI'm not enough.
And the sleep deprivation unreal, like absolutely unreal.
(21:35):
I went five years between thetwo kids never having more than
I was longer than five years.
I was like seven or eight,never having more than two hours
of sleep at a time, and youknow that that was the biggest
refining experience, to behonest.
So that's why one of the thingsI always focus on is whatever
your family needs to do, and I'swhy one of the things I always
focus on is whatever your familyneeds to do and I think a lot
(21:58):
of people need this permissionWhatever your family needs to do
to get the most amount of sleepfor the greatest number of
people in your family, do it.
I don't care what it is, aslong as it's legal and it's
reasonably safe.
Do it right, because sleep isjust such a huge challenge for
(22:19):
families that are neurodivergentand living with autism, no
matter what age or stage thoseautistic people are, so
definitely parenting.
Speaker 1 (22:30):
In creating this community.
For people who have similarchallenges, similar struggles,
knowing that you were in thisplace, where you were being made
to feel you were on thereceiving end of you, are not
enough.
You're clearly a bad mom andone of the motivating factors,
(22:53):
I'm sure, in creating thiscommunity is to prevent other
families, specifically mothers,from feeling that glare creating
(23:20):
this community, and have youfelt as though you've been able
to help other mothers throughthat by providing a mirror for
them and helping them to seethat they are enough, they are
not alone, that it isn't aboutbeing a bad mom?
Speaker 2 (23:34):
That is such a good question.
You know, when I hear parentssay that their child is
struggling less, that they'refeeling better, that they are
prioritizing their own needsbecause that is something that
does not get talked about veryoften.
When you become a parent,usually you anticipate the kids
are going to have really highneeds that first year and then
(23:56):
gradually it'll be a slowweaning of responsibility for
you as the parent and it shiftsand it changes and you know it
goes on with with thedevelopment of the child.
When you have an autistic childit's classified as a
developmental delay.
You don't really know at whichpoint their development is going
(24:17):
to stop or it's going to bepaused or when they're going to
pick up on things that they maybe struggling with.
And for me what happened was itwas just a really slow slide
into having no boundaries withmy children.
Right, because, especially assomeone who did the attachment
parenting thing when they wereinfants, which we would have
(24:39):
really been in trouble if thathadn't been my plan right, like
these were Velcro children whoneeded to be with me constantly
and held and in the carrier andon-demand nursing and yada, yada
, yada.
But no one ever tells parentsthat I've been aware of how to
sort of go from that into havinga more boundaried approach to
(25:00):
life.
And when you have a kid that'sautistic, especially one that
evades diagnoses for years,there comes a point where you
look down at this four-year-oldhuman being and you're like you
can talk, I know you can go tothe bathroom by yourself, but
you refuse to and they're just.
They seem so difficult and itis a challenge to parent through
(25:25):
it.
But then you're having peoplelike well, what's wrong with him
or her?
Why are they acting like that?
Why are they having a hard timemaking friends?
You may be losing parentfriends because if your kid's in
a stressful social situationand they act out in a way that
other parents deem notappropriate, inappropriate, then
they look at you like you'reresponsible and it is your kid
(25:48):
right Like you're choosing notto parent right yes.
And it it's very multi-layeredand a lot of parents you know,
find themselves, for the lessobvious autistic kids that five,
six, seven your age not havinga lot of friends, possibly
having burn bridges with familyagain which comes into the not
(26:09):
diagnosed elders being like whycan't you just make that kid
behave Right?
Lacking support, the programs tohelp take years to get into.
It's just this really horriblesituation and I know that I have
helped a lot of other parentsand, like you said, it's usually
moms that are coming to me forsupport Navigate that without
(26:29):
feeling alone, without feelinglike they're doing something
wrong, because, at the end ofthe day, if you're doing your
best, it's all you can do.
And a lot of these programs thatare available government
programs, state programs, schoolprograms they're not advertised
right, no one knows where to gofor help and it's just a whole
(26:49):
bunch of Facebook groups andparents again usually moms
trying to help and be like thisis the link you need to apply
for this program, or this schoolhas an amazing extended
resource room.
If you can get into thatdistrict, then they're going to
be able to help and support youand it's given me so much hope
(27:10):
to see just in the last 10 yearsor so that I've been involved
in the community, how it's grownand how parents of younger kids
are not having some of the samehurdles that I did as a newer
mom and there's just so muchmore awareness and people are
recognizing their ownneurodivergence and it doesn't
(27:31):
feel so lonely anymore and Ithink contributing to that to
having other people not feel soalone is probably what makes me
feel the best about what I'vedone.
Speaker 1 (27:42):
That is extraordinary , I love.
I love how you have taken theexperiences that you had and
said how can I pass it along tomake life easier and more
welcoming for people who aregoing through what can feel like
(28:07):
some of the most isolatingtimes.
I mean parenting young kids canfeel isolating in and of itself
if your child is the mostnormal on the planet quote,
unquote, right, like if you aregoing through just the
traditional do they sleep or notsleep?
I mean it's one of my originaliterations in life was going
(28:33):
into the mom blogging world.
In life was going into the momblogging world.
And I did that because I was ina mom's group with young kids
and found myself surrounded bymoms who were when was the last
time I showered?
My kids won't eat theirvegetables.
My kids are always fighting.
I don't get any time by myself.
I'm always doing the wrongthing.
And this was just a traditionalgroup of women in the middle of
(28:57):
a suburb of St Louis, missouri,and it just felt like nobody
knew how to adapt to the newnormal of being a mom and I
thought I want to remind moms myoriginal blog was Extraordinary
.
Mommy, want to remind moms thatwhat they're doing every day is
(29:20):
extraordinary.
If your child is going to bedat night and they know that
they're safe and they're loved,you win.
Because there's so many otherthings happening and we're
constantly beating ourselves up,right, adding in the additional
layers of neurodivergence,which was not even a word I had
(29:44):
heard in 2006, 2004,.
Right, because at that point Ijust wanted to make sure I knew
how to prep their heads up.
You know, it definitely wasn'tsomething that applied to me at
the time.
It wasn't something that I hadon my radar for my kids, and I
(30:05):
can remember at the time, new onTwitter, I asked every single
day like what are you gratefulfor?
On Twitter, it was one of thethings I became known for in the
mom blogosphere was asking whatare you grateful for?
And it would take me hours torespond to everyone.
Right, because that's back whenTwitter was actually a
conversation and because we weretalking before about the little
(30:27):
things we're grateful for.
Right, and I remember a momsaying one time I was told my
autistic child would never speak, and today he said, mama, and I
mean this is 20 years ago thatI was given this response and I
thought, wow.
This is why I ask right,because we need that perspective
(30:50):
.
Speaker 2 (30:52):
We do, and that mom needed a place to celebrate a
win, exactly.
Speaker 1 (30:57):
Because that's what I wanted.
I wanted to give people theplatform to say you haven't?
You know, like, maybe you justgot a book deal?
And someone else said Isurvived a heart attack two days
ago.
I mean, people would say someof the most extraordinary things
.
Some people said my sister'sgetting married and some people
said, you know, like I got outof bed this morning.
But I wanted people to have aplace to say the thing that they
(31:24):
needed to say and that stuckwith me.
But it was one of the firsttimes that I was aware of the
power of an autism diagnosis andalso the power that we have as
mothers to say I don't acceptwhat you're telling me.
(31:47):
My child is not capable of.
Speaker 2 (31:54):
That is an amazing point, and the thing about
autism is that it's adevelopmental delay.
It does not mean thatdevelopment is stopped.
It does not mean that they'renot capable of growing and
learning and changing, and itreally does not mean if someone
is non-speaking that they arenon-verbal Like.
There's a huge difference.
There's a lot of autistics whoare not able to speak, but they
are able to communicate.
(32:15):
There's a bunch of differentways to do it now Communication
devices, a PECS board.
There's eye gaze trackingsoftware for them to spell,
spell, to communicate.
There's a lot of differentresources now and what you're
finding is that theseindividuals some of them are
children, some of them areadults now we just assumed that
(32:39):
they were not able tocommunicate, that they didn't
have thoughts they were willingor able to share, and you find,
when you can find a way toconnect with these people, that
they have as much to say asanybody else and they are aware
of what is being said aroundthem.
And one of the things that Ireally love to see as awareness
of neurodiversity is growing isthat the people this is a little
(33:04):
tricky the people at both endsof the spectrum right, you have
the people who have very highsupport needs, are getting the
support that they need to havethese communications with their
caregivers, with other people intheir lives so that they can
have a more engaged and morefulfilling life.
You're also finding people likeme on the opposite end of the
(33:27):
spectrum, who are people like meon the opposite end of the
spectrum who are, who have liveda whole life without awareness
of our brains and how they work,and we're gaining that
awareness from, you know, socialmedia.
A lot of it is the connectivitythat we've had and the ideas
that are being spread.
And you know people like me whokids get diagnosed and you're
(33:49):
like this is really challengingfor me and never stopping to
realize that the same thingthat's causing my child's
challenges is causing mychallenges with my child's
challenges.
Right, and no one stopping tosay, like both of your kids are
diagnosed, hey, karen, got timefor a test?
You know, no one ever did that.
(34:10):
Got time for a test?
Um, you know, no one ever didthat.
Still, I mean, we're we'reabout 10 years post our first
diagnosis for either of the kids, um, and you know it really
should be.
If you have more than two kidsthat are diagnosed, someone
needs to take a look at thefamily tree um and the parents.
Speaker 1 (34:27):
Really Okay.
Yeah, that's it.
That's an important thing.
It is that I think people needto hear right.
If children are being diagnosed, I wouldn't have known the is
there.
Is it a genetic?
Speaker 2 (34:43):
component.
There definitely is a geneticcomponent.
And just to share a little bitmore about my family, I have
Ehlers-Danlos syndrome, which isa type of genetic collagen
disorder.
Unfortunately, I passed it onto both kids unknowingly, and
autism and Ehlers-Danlossyndrome kind of go together
like peas and carrots and Idon't fully understand the
(35:07):
connection.
I don't go into the medicalside of autism support or
diagnosis because that's aminefield I don't want to
participate in.
Yes, so anyone that hashypermobility issues has a
family history of weird medicalsymptoms that seem unrelated.
(35:29):
But you just feel like you comefrom a family of very unhealthy
people and if folks in yourfamily start getting those
autism diagnoses, take a lookbecause there's definitely a
genetic factor going on betweenautism and Ehlers-Danlos
syndrome and several of theother neuro complex, neuro spicy
diagnoses, other neuro complexneuro spicy diagnoses.
Speaker 1 (35:50):
That's really interesting.
I, these are things I, I Idon't know Right.
But to your point about socialmedia opening these doors, I
mean these are so many of theplaces that we're learning so
much about ourselves and it forme, it was a lot of putting
together all of the symptoms,the symptomology, and that drew
(36:15):
me to say wait a second, if Ihave all of these and that adds
up to a diagnosis, then you know, I go to a doctor and I say
okay, and the doctor says, well,yes, danielle, and I had no
idea, you know.
And it was interesting becausemy fiance, when I went to him
(36:40):
after going through this process, he said I knew on our first
date and I said, well, I mean,come on now, I okay, I had no
idea.
Speaker 2 (36:52):
Right, we're often the last to know, which is funny
.
And then the flip side of thatcoin is then you look around and
realize that the only friends,the only people you've ever
really gravitated to, are otherneuro complex or neuro spicy
people as well, which iswonderful because you feel seen
and comfortable and at home withthem.
But it's also difficult becausewe are all struggling right to
(37:16):
raise our spicy children and tonavigate life with the ups and
downs and challenges thatunfortunately come with trying
to navigate life withneurocomplex challenges.
So it's, yeah, it's, it's likea wake up call, like you're in
the matrix or something and youknow taking the other pill and
all of a sudden you can see allthe things.
Speaker 1 (37:37):
But what would you say to a family?
So I had a friend who his sonwas recently given a diagnosis
and it felt devastating to him.
What would you say to someone?
Because my one of the thingsthat I tried to say was please,
don't allow a diagnosis to feelso fatalistic.
(38:01):
I feel as though it's not aslimiting as it sounds, as
limiting as it sounds, Please.
And I, neither of my children,were diagnosed with anything
young, but it felt as though, Imean, he was crushed and I don't
(38:27):
know that I had the appropriateverbiage to tell him.
I kept hearkening back to thiswoman who had shared this moment
with me online and I thoughtdon't let the doctors limit what
your son is capable of.
Don't let them tell you what hecan do.
(38:49):
And so I I wanted to allow youto be more appropriately verbose
in your encouragement.
Speaker 2 (39:00):
The number one thing I would say is it is absolutely
okay to grieve and to be sad forwhat you assumed would be their
life, because parents havebabies, assuming they're going
to be healthy.
They're going to grow on thepath of traditional childhood to
teenagehood, to adulthood, andanytime we deviate from that
(39:22):
plan, it can be challenging.
It is okay to be sad about that, right, and I think a lot of
parents feel guilty for that,and there's going to be a lot of
things you're going to feelguilty for.
As a parent, your feelingsshould never be one of them.
You can feel whatever you feel.
Your actions are what matter.
(39:44):
How you respond to thosefeelings matters.
Nailings matters.
The other thing that I wouldsay is you have to remember that
it is a marathon and not asprint, that you're going to be
in the parenting game forprobably a little bit longer
than you planned on beingactively involved.
(40:05):
You may have to be a little bitmore hands-on than you wanted.
You have now a new full-timejob which is navigating
therapies and appointments andschooling challenges, and it's
okay to look at the totality ofthat and to be like not
necessarily what I signed up for.
Take a breath, take a breatherand then get your head in the
(40:28):
game, because it is what yourlife is now and there will be
times where you feel like givingup and I would encourage you to
try to set some boundaries andsome rules around what feels
good for your family In doingthat.
This is really important If youever have questions In doing
(40:50):
that, this is really importantIf you ever have questions.
The autism parenting spaces area wonderful place to go for
resources, to get support, toget help, to get ideas.
If you ever question what youshould be doing for your
autistic child, the best placeyou can.
There's two really good places.
Number one is that autisticchild Pay attention to what they
need, pay attention to whatworks, pay attention to what
(41:13):
lights them up and if they'renot able to kind of give you a
heads up on what is working forthem, for whatever reason, talk
to autistic adults.
There are enough places online.
There are enough people thatare focused on helping parents
parent.
It's not the kind of work I do,but there is enough people who
(41:34):
do that work that you can almostalways find a good workaround
solution.
The last thing I would say isfocus on strengths-based
approaches, right.
So don't listen to thosedoctors that say they're never
going to speak.
Get them into speech therapy,right.
An autistic person intuitivelydoesn't really often understand
(41:58):
what's going on with their bodyand they like, even now, I can
never tell when I'm hungry.
You know, is like a 47 year oldadult lady who's responsible
for a whole house and two kidsand a dog and like I can feed
everybody else.
But do I ever stop and say whenwas the last time you had food?
No, I don't.
Speaker 1 (42:16):
Um, yeah, it's funny, I don't do that at 52.
Speaker 2 (42:19):
So I don't they're going to need help for their
whole life in various ways.
They're never going to be afully independent.
Now, oh, I say that, and itsounds bad.
When I say they're never goingto be a fully independent person
, I say it in the way of likenone of us are ever truly
independent.
They may need reminder apps ontheir phone to beat right.
(42:40):
They may need someone to helppay their bills, not in the
sense of earning money, but inreminding them to do it.
They may need total supportsthe rest of their life.
You really don't know.
But getting appropriate therapythat meets their needs when
they're younger goes a reallylong way towards supporting them
(43:00):
.
And the last thing I would sayis, just because it is the in
the U S at least, it really isthe only thing that most doctors
will tell parents to do, andit's ABA therapy, uh, which is
applied behavior analysistherapy.
Be really aware of what you'regetting yourself into, uh, with
(43:21):
that, with any agency thatoffers that to you, um, it is
often not a great choice for alot of families and I don't
think it should be anyone'sfirst approach.
It is what insurance pays forand it's what's been studied and
tested, um, but it has beenvery, very harmful to a lot of
(43:42):
adult autistics, and beforeanyone does that, I would just
encourage them to look into thata little bit more.
Speaker 1 (43:48):
Okay, yeah, that's good advice, karen.
How do you, how do you definehope?
Speaker 2 (43:55):
Oh my gosh, it's so funny.
My former therapist and formerbecause she retired we used to
have this running joke abouthope and anytime I said I was
hopeful, something would happen.
So for a long time my body, mynervous system, didn't even feel
comfortable to hypothesizeabout hope.
Oh, that's funny.
(44:17):
Right now, hope feels like goodthings are going to happen, and
it may not be what I want, butI'm hopeful that it's what I
need and that we're on the righttrack for myself and for my
kids and for my family, andwe're doing the best we have
with what we have, and hope justmeans that better things are
going to be out there for us aswe continue to just walk this
(44:39):
path, doing the best that we can.
Speaker 1 (44:41):
I love that.
I love that you've spent timewith me.
Where can people find you?
Connect with you, be a part ofthis beautiful community you've
created.
Speaker 2 (44:49):
Yeah, thank you.
It's the self-care supportsquad on Substack and it's
actually karencasosubstackcomand we are excited.
I'm kind of changing things upa bit to shift my focus from
just helping parents ofneurodivergent kids to helping
parents who probably also haveneurodivergent kids but
navigating kind of this midlifetransition and managing family
(45:12):
relationships on both sides youryounger generation and your
elder generation when we're notalways as well supported as we
would like to be.
Speaker 1 (45:23):
You are.
You're doing extraordinary workand I am so grateful for the
time you have taken to haveconversation with me and putting
yourself out there and makingsure that people are feeling
seen and loved and supported,and I, as a mother, that means
(45:43):
so much.
As a woman who loves to supportother women and other mothers,
I am incredibly grateful for thework you're doing.
So thank you and thank you forbeing here.
I really appreciate it.
Thanks, danielle, thank you andfriends, thank you for spending
time with Karen and I today.
(46:04):
I hope that Hope visited youwell today and that if our
conversation resonated, you willturn around and share it with
the people you know and love andthat you will come back and
visit us again sometime soon andbetween now and then, you will
take very good care of yourself.
Take care.
Naturally, it's important tothank the people who support and
(46:29):
sponsor the podcast.
This episode is supported byChris Dulley, a trusted criminal
defense attorney and friend ofmine here in St Louis, who
believes in second chances andsolid representation.
Whether you're facing a DWI,felony or traffic issue, chris
handles your case personallywith clarity, compassion and
over 15 years of experience.
When things feel uncertain, ithelps to have someone steady in
(46:52):
your corner.
Call 314-384-4000 or314-DUI-HELP, or you can visit
dullylawfirmcom to schedule yourfree consultation.
I was doing what everybody told me to do right.
Speaker 2 (00:02):
I was following all the rules and he's talkative and
he's outgoing and he can makeeye contact and he can have a
conversation with you.
He can't be autistic and ittook us about three years to
finally get an accuratediagnosis for him and in that
time, you know, everyone justlooks at you like you're a bad
mom and I'm over here like Iliterally am doing everything I
(00:25):
can for this child and everyoneis judging me and saying that
I'm not enough.
Speaker 1 (00:39):
Welcome to Hope Comes to Visit.
I'm Danielle Elliott Smith.
Hope Comes to Visit is morethan a podcast.
It's a gathering place.
It's a place for stories andheart conversations, and a place
that we hope allows hope tovisit just right on time.
Today's guest is someone I amdarn excited for you to meet.
Karen Caso is a friend, a newfriend, a writer, a certified
(01:03):
Master Life Coach and aneurodivergent mom of two
autistic kids.
After years of navigatingcaregiving, homeschooling and
burnout, karen became deeplycommitted to helping overwhelmed
parents build resilience andfind self-care that works for
their unique lives.
She shares honest stories andgentle support on her sub stack.
(01:23):
She shares honest stories andgentle support on our sub stack,
the self-care support squad,creating space for parents to
feel seen, supported and alittle less alone.
Let's take a quick moment tothank the people that support
and sponsor the podcast.
When life takes an unexpectedturn, you deserve someone who
will stand beside you.
St Louis attorney Chris Dullyoffers experienced one-on-one
(01:44):
legal defense.
Call 314-384-4000 or314-DUI-HELP, or you can visit
DulleyLawFirmcom that'sD-U-L-L-E LawFirmcom for a free
consultation.
Karen, thank you so much forbeing here with me.
Thank you for having me.
I'm super excited.
I am really excited to havethis conversation.
(02:06):
So this is for me.
I've had lots of conversationson the podcast about, about loss
and about difficult times, andI I love that we're going to
have a conversation about life,about what it looks like to, to
live authentically, to addresslife as it happens and to to
(02:31):
help other people, and I I wasso drawn to your story when you
first reached out, so I I wantto welcome you.
So thank you for being here,for reaching out and for taking
the time with me today.
Thank you.
Speaker 2 (02:49):
Yeah it's, you know it's.
Um, I think a challenge thatmore and more folks are becoming
aware of neurodivergence ingeneral is more and more kids
are diagnosed.
Parents are starting to realizethat they themselves are also
neurodivergent.
Um, and we're kind of in thatsandwich generation of we're
navigating supports for our kids.
It's really difficult and thenwe're kind of hitting
(03:10):
middle-aged and realizingthere's something going on for
us as well, and then, with thereframe of looking back at your
whole life and seeing why someof the challenges you had were
so challenging, then alsolooking forward to being like
this is why I have some of thefamily challenges that I have
with my elder relations and myparents and maybe my
grandparents, aunts and uncles,and it's a really interesting
(03:35):
time to be going through thisprocess of learning and growing
and adapting.
And I've found community isreally hard for a lot of people
in my position to maintainbecause we have so much going on
in our lives and making spacefor people to have that
community is really important tome and I've seen tremendous
(03:56):
changes in people's lives andhow they relate to themselves
and their children and theirparents and their families once
they have the tools to be awareof the challenges they're facing
and how to deal with themconstructively.
Speaker 1 (04:07):
You know it's interesting.
I feel as though you've somehowbeen sitting on my shoulder for
the past few weeks when youtalk about the middle age and
the gap and the kids and theparents, the gap and the kids
(04:30):
and the parents.
I recently moved my dad fromFlorida to St Louis and I'm very
firmly in that space betweenkids who have gone to college
and recently coming to termswith my own diagnosis, which I
had no idea my entire life, andpaying such close attention to
(04:50):
my dad and thinking, wait aminute, when did that?
Speaker 2 (04:58):
come from.
Speaker 1 (05:00):
And once I had my diagnosis, I called my daughter
and I said hey, and she said Ithink I do too, and I said I'm
pretty sure you do, but it'sjust so interesting because
we're able to have theseconversations so much more
openly now.
So what first prompted you tocreate this community?
(05:23):
So let's start there.
Speaker 2 (05:27):
Sure, I have been building community for years
it's kind of what I do and I hadbuilt a homeschooling community
and then I had worked withother autism parents in Idaho,
where I live, and it just feltlike everyone was saying they
wanted self-care and everyone'ssaying, oh, it's so hard.
And when the pandemic hit, oursituation was unique because we
(05:50):
went from having between 30 to50 appointments every week
between me and the two kids tohaving nothing, and we had
already been homeschooling, sothem being at home wasn't a
change for us.
Suddenly, I had all this spaceand I didn't know what to do
with it and I am not a personwho does well without something
to do.
So I just started diving intolearning about copywriting and
(06:14):
online businesses and coachingand working for other folks, and
it gradually morphed into Iwant to use the challenges I
faced and the tools I'vediscovered to overcome them, and
I want to make self-caresomething that is doable for
parents If they can't leave thehouse, if they don't have
childcare, when they're justfaced with extraordinary levels
(06:38):
of stress that no one personshould have to be subjected to,
and when they're in a positionwhere they well, this is the
thing I like to say you canleave, there is nothing stopping
you, you can make that choice,but it feels like you can't
right.
What does society say about aparent, especially a mom, that
walks away from their children?
But it's that honest awarenessthat it is a choice and you do
(07:03):
wake up every day and you chooseto parent them and you choose
to do what you can to be thebest version of them, or
yourself for them, rather, andthis concept that our self-care
doesn't look like what we hearmainstream self-care talk.
It's not bubble baths, it's notgoing to the spa.
I've never been able to take aweekend away with my girlfriends
(07:24):
.
I can, you know.
My kids are 11 and 15.
I'm lucky I get one night aweek out and about to, you know,
hang out with my mom friendsand trying to give people the
tools so that they're notstruggling as much.
And it's, you know, grownpretty well since then and I'm
excited to help support otherparents.
Speaker 1 (07:46):
So then, what does self-care look like?
So if we're, if we're boilingit down and we're saying, ok, so
we're not high in the sky,we're not, we're not elitists,
we're not, you're not.
You don't have the luxury ofbubble baths and a master chef
and no one is coming to do foryou.
Yes, what do pockets ofself-care for the real world
(08:11):
look?
Speaker 2 (08:12):
like.
For me it's doing some vagusnerve care, which are some
exercises.
It's as simple as laying downon the floor and putting your
legs up the wall.
Do that for five minutes.
That totally helps to resetyour vagus nerve and to sort of
help with some of the physicalanxiety sensations that a lot of
parents have to navigate.
(08:32):
It's helping your body to resetafter you've supported your
child through a meltdown, whichis a very stressful situation
For me.
I do a lot of gratitude.
Every time I get really angryor frustrated, I stop myself and
say what are three things I canbe grateful for right now?
The more you do that, it reallyretrains your brain to sort of
(08:54):
focus on those types of thingsso that in the moment, instead
of your brain automaticallygoing to the stress response
after a while, you habituateyourself to look at the things
to be grateful for and it justhelps to reset your brain.
I make really healthy choiceswith my food and I have not been
(09:15):
able to drink for a very longtime.
Um, just with the way my bodyprocesses alcohol, we are not
friends, um, and it's.
Speaker 1 (09:22):
I'm sober, so I'm in the same category, right?
So I?
Speaker 2 (09:27):
oh my gosh.
It is a coping mechanism.
I know a lot of parents fallinto during stressful, stressful
seasons of life and when you'reneurodivergent or parenting
neurodivergent kids, you knowthat stressful season of life
sometimes never ends Right.
So it can just become reallyeasy to sort of choose those
numbing behaviors is how italways felt for me and to make
(09:49):
different choices things thatlet you show up the way that
your kids need you, the way thatyou feel best about being in
the universe, in the world as aparent.
And, again, things that you cando even if you can't get away
from the kids, even if you can'tleave home, even if you don't
have support or backup orrespite.
Speaker 1 (10:13):
It's so interesting when you talk about gratitude,
because gratitude has alwaysbeen a huge focus for me and I
am very aware one of the thingsthat I always suggest to people
about gratitude is that we don'tautomatically go okay, shelter,
food, that we truly think aboutsome of the things that put a
(10:51):
smile on your face because it'sfresh flowers, or the fact that
I could feel my kitten curled upinside my knee this morning
when I woke up, or that firstsip of coffee when I'm waking up
, or the fact that my alarmwasn't obnoxious when it went
off.
Whatever it is that I happen toreally feel grateful for, and
(11:16):
when I am working with people inrecovery, I always talk about
gratitude, and it's funnybecause I talk about it so much
that people frequently give me ahard time in the.
Are you really that gratefultype of tone?
And I am, because it has longbeen a tool for me.
(11:36):
It has long been something thatI have had to focus on in order
to keep myself on the rightpath, and I think that it's like
you.
I've used it for so long thatit's by rote.
(11:57):
Now I write it down every day,but there are times when I have
to put myself in that placebecause otherwise I I'd be angry
.
Speaker 2 (12:14):
Like looking in a mirror.
Yeah, I get the pushbacksometimes too of how can you
really find things to begrateful for?
And once you start doing it,you realize there are so many
things to be grateful for andoften, if I you know, do a
social media post thankfulThursday.
What's you know?
One thing you're grateful fortoday?
You do get folks that say, oh,I'm grateful for food, I'm
(12:36):
grateful for shelter, and that'sa wonderful place to start.
Where I found like the reallygood juicy vibes are is with the
little things.
Like I'm grateful for my washerand dryer because it's really
wonderful to not have to dealwith dirty laundry going to the
laundromat or having to hangthings up on a line outside to
(12:58):
dry.
Right.
I am grateful that we have anew physical therapist who's
working with one of my kids andthe company they work for does
home visits, so I have one lessappointment I have to drive to
each week.
You know even the reallychallenging things in our life
and not everything.
I'm not one of those peoplethat says everything happens for
(13:20):
a reason and you have to find,and you have to find the meaning
in it.
Speaker 1 (13:24):
Right, I don't know that's actually one of my least
favorite phrases on the planetand if it's said to me when I'm
going through something, it is astruggle not to reflexively
punch someone in the face.
Through something, it is astruggle not to reflexively
punch someone in the face.
Speaker 2 (13:38):
So it's for me personally the way my brain
works.
I personally do like to findthe reason for me that I've gone
through a challengingcircumstance.
I would never put that onsomebody else.
I do.
It's one of the reasons why Istarted my business right,
Because I had always said thatthe challenges that we went
through when my kids wereyounger and they were pretty
extreme that it had to be forsomething.
(14:00):
It had to be for a purposegreater than you know.
I'm air quoting here, but justmy personal growth or just air
quotes getting the kids throughit right.
I wanted to be able to use whatI had learned to help others
and to support other parents sothat they wouldn't struggle as
much and when you know your,your your kid's having a
meltdown, you're reallystruggling in that moment.
(14:22):
To be able to have that reflexof saying there is something
here to be grateful for.
You know, maybe it's that mykid didn't put a hole in the
drywall, right.
Or maybe it's that we did nothave to call the police or go to
the emergency room for support.
Today, even in the worstcircumstances, I try to reflect
(14:45):
gratitude to myself becausethat's how I process my way
through it, and I do see how forsome folks, that can be very
off-putting, but I know that itworks for me, so it's a tool
that I would share.
It helps you don't have to doit and I would never push it on
anyone, but it does make adifference, right, and in those
(15:07):
goofy little things that maybeyou don't notice.
Speaker 1 (15:10):
Well, and so there are a couple of things that you
said that I very much agree withthat resonate for me.
So one is that I don't everpush it on anyone else.
Right, I offer it as asuggestion, but I don't.
I recognize that anysuggestions anyone makes aren't
(15:31):
necessarily the right fit foreveryone.
Right, that's one of thebeautiful things about this
podcast, because we're talkingto so many different people on
any given day.
I recognize that talking aboutneurodivergence may not be the
right fit for someone today, butthere may be a portion of our
(15:52):
conversation where someone says,oh my gosh, I didn't know that
right.
Or I might be talking aboutgrief one day, or I might be
talking about writing the nextday, or I might be talking about
cancer the next day, or there'sjust little bits and pieces.
But even within, I was having aconversation with a woman about
a maternal her birth experience, and during that conversation
(16:17):
she said something that I had noidea about and I thought, wow,
now even that's an aha momentfor me, and maybe there's
someone listening to that whothinks, well, I didn't have that
exact experience, but I hadsomething similar and I didn't
correlate those two, and so myhope is that, as people are
(16:38):
listening, either they're goingto hear something that resonates
or it will trigger somethingelse, or they'll hear and
they'll think someone else mightknow this might resonate with a
friend and they can pass it on.
But I don't ever want people tofeel like this is the only way
we can do this, like if you arein recovery, the only way is AA.
(17:03):
If you are in recovery, theonly way is meditation or prayer
, or I want people to know thatthere are options, which is
similar to what you were sayingabout the everything happens for
a reason.
I don't believe everythinghappens for a reason.
I do believe for me that I'msupposed to figure out.
(17:26):
What am I supposed to learn andwhat am I supposed to do with
this?
Because this has clearly beenpainful and I know that when I
go through something painful, Ichange, like it molds me in some
(17:48):
way, and what is the moldingdoing to me?
How am I being refined and howam I changing, hopefully for the
better, because the version ofme right now wouldn't be who I
am right now if I hadn't beenrefined in all the ways that I
have over the course of theseamazing and challenging
(18:13):
experiences.
Speaker 2 (18:15):
That's such a good way of looking at it, and I
think I have a similar viewpoint, and it's it's all about having
a big toolbox Right With allthe different things in there,
and you have to find what worksfor you, and I think, whether
that's self-care, whether it'swith sobriety which to me seems
like a type of self-care Right,and it's it's a challenging road
(18:36):
and you've got to be mindful ofwhat you're doing and how
you're feeling and how thingsare going for you.
And to me, parenting is similaras well, where you have a
commitment to these humans andyou know you have to do the best
for them, and part of that isshowing up the best way you can,
and that's about the choicesthat you make and the challenges
(19:01):
that you face and how yourespond to them.
So I just I like having a lotof tools in my toolkit.
Speaker 1 (19:08):
What do you think of your life experiences?
Has been the sharpest tool foryou.
Speaker 2 (19:22):
Oh, that's my kids, um it, they, um and again, I
don't go into like superspecific details about them, um,
I will say that they are atremendous mirror, right, both
of them in their unique waysbecause, uh, they have a very
long list of diagnoses and thetwo of them and the same
diagnoses and I actually have alot of the same diagnoses as
well.
But it is so amazing to me howcompletely different those two
(19:44):
kids are from each other.
Oh my gosh, it's wild, and itjust seems I go a little woo for
a second.
I'm a gemini, right.
So two halves of personality,like one's yin, one's yang, and
like the two of them combined,just it's my whole personality
come out.
That's so funny, it's wild.
(20:06):
And as my, as my teenager getsolder and he settles more into
what I lovingly refer to as hisgrumpy old man persona, he is
just turning out to be verysimilar to me.
And when I look back at thechallenges we had when he was
younger because in reality I canlook back now and say it's
because we do have the samepersonality it's just I didn't
(20:28):
have all the information aboutmyself and I didn't understand
the operating system that mybrain was working on as an
autistic person, as aneurodivergent person, as I was
living through a lot of traumain the moment, but also growing
up as an undiagnosed person.
It really all makes sense nowand I can look back now and see
(20:53):
how I made things harder formyself in the way that I was
parenting him, but I was doingwhat everybody told me to do,
right, I was following all therules and he's talkative and
he's outgoing and he can makeeye contact and he can have a
conversation with you.
He can't be autistic.
And it took us about threeyears to finally get an accurate
(21:14):
diagnosis for him and in thattime, you know everyone just
looks at you like you're a badmom and I'm over here like I
literally am doing everything Ican for this child and everyone
is judging me and saying thatI'm not enough.
And the sleep deprivation unreal, like absolutely unreal.
(21:35):
I went five years between thetwo kids never having more than
I was longer than five years.
I was like seven or eight,never having more than two hours
of sleep at a time, and youknow that that was the biggest
refining experience, to behonest.
So that's why one of the thingsI always focus on is whatever
your family needs to do, and I'swhy one of the things I always
focus on is whatever your familyneeds to do and I think a lot
(21:58):
of people need this permissionWhatever your family needs to do
to get the most amount of sleepfor the greatest number of
people in your family, do it.
I don't care what it is, aslong as it's legal and it's
reasonably safe.
Do it right, because sleep isjust such a huge challenge for
(22:19):
families that are neurodivergentand living with autism, no
matter what age or stage thoseautistic people are, so
definitely parenting.
Speaker 1 (22:30):
In creating this community.
For people who have similarchallenges, similar struggles,
knowing that you were in thisplace, where you were being made
to feel you were on thereceiving end of you, are not
enough.
You're clearly a bad mom andone of the motivating factors,
(22:53):
I'm sure, in creating thiscommunity is to prevent other
families, specifically mothers,from feeling that glare creating
(23:20):
this community, and have youfelt as though you've been able
to help other mothers throughthat by providing a mirror for
them and helping them to seethat they are enough, they are
not alone, that it isn't aboutbeing a bad mom?
Speaker 2 (23:34):
That is such a good question.
You know, when I hear parentssay that their child is
struggling less, that they'refeeling better, that they are
prioritizing their own needsbecause that is something that
does not get talked about veryoften.
When you become a parent,usually you anticipate the kids
are going to have really highneeds that first year and then
(23:56):
gradually it'll be a slowweaning of responsibility for
you as the parent and it shiftsand it changes and you know it
goes on with with thedevelopment of the child.
When you have an autistic childit's classified as a
developmental delay.
You don't really know at whichpoint their development is going
(24:17):
to stop or it's going to bepaused or when they're going to
pick up on things that they maybe struggling with.
And for me what happened was itwas just a really slow slide
into having no boundaries withmy children.
Right, because, especially assomeone who did the attachment
parenting thing when they wereinfants, which we would have
(24:39):
really been in trouble if thathadn't been my plan right, like
these were Velcro children whoneeded to be with me constantly
and held and in the carrier andon-demand nursing and yada, yada
, yada.
But no one ever tells parentsthat I've been aware of how to
sort of go from that into havinga more boundaried approach to
(25:00):
life.
And when you have a kid that'sautistic, especially one that
evades diagnoses for years,there comes a point where you
look down at this four-year-oldhuman being and you're like you
can talk, I know you can go tothe bathroom by yourself, but
you refuse to and they're just.
They seem so difficult and itis a challenge to parent through
(25:25):
it.
But then you're having peoplelike well, what's wrong with him
or her?
Why are they acting like that?
Why are they having a hard timemaking friends?
You may be losing parentfriends because if your kid's in
a stressful social situationand they act out in a way that
other parents deem notappropriate, inappropriate, then
they look at you like you'reresponsible and it is your kid
(25:48):
right Like you're choosing notto parent right yes.
And it it's very multi-layeredand a lot of parents you know,
find themselves, for the lessobvious autistic kids that five,
six, seven your age not havinga lot of friends, possibly
having burn bridges with familyagain which comes into the not
(26:09):
diagnosed elders being like whycan't you just make that kid
behave Right?
Lacking support, the programs tohelp take years to get into.
It's just this really horriblesituation and I know that I have
helped a lot of other parentsand, like you said, it's usually
moms that are coming to me forsupport Navigate that without
(26:29):
feeling alone, without feelinglike they're doing something
wrong, because, at the end ofthe day, if you're doing your
best, it's all you can do.
And a lot of these programs thatare available government
programs, state programs, schoolprograms they're not advertised
right, no one knows where to gofor help and it's just a whole
(26:49):
bunch of Facebook groups andparents again usually moms
trying to help and be like thisis the link you need to apply
for this program, or this schoolhas an amazing extended
resource room.
If you can get into thatdistrict, then they're going to
be able to help and support youand it's given me so much hope
(27:10):
to see just in the last 10 yearsor so that I've been involved
in the community, how it's grownand how parents of younger kids
are not having some of the samehurdles that I did as a newer
mom and there's just so muchmore awareness and people are
recognizing their ownneurodivergence and it doesn't
(27:31):
feel so lonely anymore and Ithink contributing to that to
having other people not feel soalone is probably what makes me
feel the best about what I'vedone.
Speaker 1 (27:42):
That is extraordinary , I love.
I love how you have taken theexperiences that you had and
said how can I pass it along tomake life easier and more
welcoming for people who aregoing through what can feel like
(28:07):
some of the most isolatingtimes.
I mean parenting young kids canfeel isolating in and of itself
if your child is the mostnormal on the planet quote,
unquote, right, like if you aregoing through just the
traditional do they sleep or notsleep?
I mean it's one of my originaliterations in life was going
(28:33):
into the mom blogging world.
In life was going into the momblogging world.
And I did that because I was ina mom's group with young kids
and found myself surrounded bymoms who were when was the last
time I showered?
My kids won't eat theirvegetables.
My kids are always fighting.
I don't get any time by myself.
I'm always doing the wrongthing.
And this was just a traditionalgroup of women in the middle of
(28:57):
a suburb of St Louis, missouri,and it just felt like nobody
knew how to adapt to the newnormal of being a mom and I
thought I want to remind moms myoriginal blog was Extraordinary
.
Mommy, want to remind moms thatwhat they're doing every day is
(29:20):
extraordinary.
If your child is going to bedat night and they know that
they're safe and they're loved,you win.
Because there's so many otherthings happening and we're
constantly beating ourselves up,right, adding in the additional
layers of neurodivergence,which was not even a word I had
(29:44):
heard in 2006, 2004,.
Right, because at that point Ijust wanted to make sure I knew
how to prep their heads up.
You know, it definitely wasn'tsomething that applied to me at
the time.
It wasn't something that I hadon my radar for my kids, and I
(30:05):
can remember at the time, new onTwitter, I asked every single
day like what are you gratefulfor?
On Twitter, it was one of thethings I became known for in the
mom blogosphere was asking whatare you grateful for?
And it would take me hours torespond to everyone.
Right, because that's back whenTwitter was actually a
conversation and because we weretalking before about the little
(30:27):
things we're grateful for.
Right, and I remember a momsaying one time I was told my
autistic child would never speak, and today he said, mama, and I
mean this is 20 years ago thatI was given this response and I
thought, wow.
This is why I ask right,because we need that perspective
(30:50):
.
Speaker 2 (30:52):
We do, and that mom needed a place to celebrate a
win, exactly.
Speaker 1 (30:57):
Because that's what I wanted.
I wanted to give people theplatform to say you haven't?
You know, like, maybe you justgot a book deal?
And someone else said Isurvived a heart attack two days
ago.
I mean, people would say someof the most extraordinary things
.
Some people said my sister'sgetting married and some people
said, you know, like I got outof bed this morning.
But I wanted people to have aplace to say the thing that they
(31:24):
needed to say and that stuckwith me.
But it was one of the firsttimes that I was aware of the
power of an autism diagnosis andalso the power that we have as
mothers to say I don't acceptwhat you're telling me.
(31:47):
My child is not capable of.
Speaker 2 (31:54):
That is an amazing point, and the thing about
autism is that it's adevelopmental delay.
It does not mean thatdevelopment is stopped.
It does not mean that they'renot capable of growing and
learning and changing, and itreally does not mean if someone
is non-speaking that they arenon-verbal Like.
There's a huge difference.
There's a lot of autistics whoare not able to speak, but they
are able to communicate.
(32:15):
There's a bunch of differentways to do it now Communication
devices, a PECS board.
There's eye gaze trackingsoftware for them to spell,
spell, to communicate.
There's a lot of differentresources now and what you're
finding is that theseindividuals some of them are
children, some of them areadults now we just assumed that
(32:39):
they were not able tocommunicate, that they didn't
have thoughts they were willingor able to share, and you find,
when you can find a way toconnect with these people, that
they have as much to say asanybody else and they are aware
of what is being said aroundthem.
And one of the things that Ireally love to see as awareness
of neurodiversity is growing isthat the people this is a little
(33:04):
tricky the people at both endsof the spectrum right, you have
the people who have very highsupport needs, are getting the
support that they need to havethese communications with their
caregivers, with other people intheir lives so that they can
have a more engaged and morefulfilling life.
You're also finding people likeme on the opposite end of the
(33:27):
spectrum, who are people like meon the opposite end of the
spectrum who are, who have liveda whole life without awareness
of our brains and how they work,and we're gaining that
awareness from, you know, socialmedia.
A lot of it is the connectivitythat we've had and the ideas
that are being spread.
And you know people like me whokids get diagnosed and you're
(33:49):
like this is really challengingfor me and never stopping to
realize that the same thingthat's causing my child's
challenges is causing mychallenges with my child's
challenges.
Right, and no one stopping tosay, like both of your kids are
diagnosed, hey, karen, got timefor a test?
You know, no one ever did that.
(34:10):
Got time for a test?
Um, you know, no one ever didthat.
Still, I mean, we're we'reabout 10 years post our first
diagnosis for either of the kids, um, and you know it really
should be.
If you have more than two kidsthat are diagnosed, someone
needs to take a look at thefamily tree um and the parents.
Speaker 1 (34:27):
Really Okay.
Yeah, that's it.
That's an important thing.
It is that I think people needto hear right.
If children are being diagnosed, I wouldn't have known the is
there.
Is it a genetic?
Speaker 2 (34:43):
component.
There definitely is a geneticcomponent.
And just to share a little bitmore about my family, I have
Ehlers-Danlos syndrome, which isa type of genetic collagen
disorder.
Unfortunately, I passed it onto both kids unknowingly, and
autism and Ehlers-Danlossyndrome kind of go together
like peas and carrots and Idon't fully understand the
(35:07):
connection.
I don't go into the medicalside of autism support or
diagnosis because that's aminefield I don't want to
participate in.
Yes, so anyone that hashypermobility issues has a
family history of weird medicalsymptoms that seem unrelated.
(35:29):
But you just feel like you comefrom a family of very unhealthy
people and if folks in yourfamily start getting those
autism diagnoses, take a lookbecause there's definitely a
genetic factor going on betweenautism and Ehlers-Danlos
syndrome and several of theother neuro complex, neuro spicy
diagnoses, other neuro complexneuro spicy diagnoses.
Speaker 1 (35:50):
That's really interesting.
I, these are things I, I Idon't know Right.
But to your point about socialmedia opening these doors, I
mean these are so many of theplaces that we're learning so
much about ourselves and it forme, it was a lot of putting
together all of the symptoms,the symptomology, and that drew
(36:15):
me to say wait a second, if Ihave all of these and that adds
up to a diagnosis, then you know, I go to a doctor and I say
okay, and the doctor says, well,yes, danielle, and I had no
idea, you know.
And it was interesting becausemy fiance, when I went to him
(36:40):
after going through this process, he said I knew on our first
date and I said, well, I mean,come on now, I okay, I had no
idea.
Speaker 2 (36:52):
Right, we're often the last to know, which is funny
.
And then the flip side of thatcoin is then you look around and
realize that the only friends,the only people you've ever
really gravitated to, are otherneuro complex or neuro spicy
people as well, which iswonderful because you feel seen
and comfortable and at home withthem.
But it's also difficult becausewe are all struggling right to
(37:16):
raise our spicy children and tonavigate life with the ups and
downs and challenges thatunfortunately come with trying
to navigate life withneurocomplex challenges.
So it's, yeah, it's, it's likea wake up call, like you're in
the matrix or something and youknow taking the other pill and
all of a sudden you can see allthe things.
Speaker 1 (37:37):
But what would you say to a family?
So I had a friend who his sonwas recently given a diagnosis
and it felt devastating to him.
What would you say to someone?
Because my one of the thingsthat I tried to say was please,
don't allow a diagnosis to feelso fatalistic.
(38:01):
I feel as though it's not aslimiting as it sounds, as
limiting as it sounds, Please.
And I, neither of my children,were diagnosed with anything
young, but it felt as though, Imean, he was crushed and I don't
(38:27):
know that I had the appropriateverbiage to tell him.
I kept hearkening back to thiswoman who had shared this moment
with me online and I thoughtdon't let the doctors limit what
your son is capable of.
Don't let them tell you what hecan do.
(38:49):
And so I I wanted to allow youto be more appropriately verbose
in your encouragement.
Speaker 2 (39:00):
The number one thing I would say is it is absolutely
okay to grieve and to be sad forwhat you assumed would be their
life, because parents havebabies, assuming they're going
to be healthy.
They're going to grow on thepath of traditional childhood to
teenagehood, to adulthood, andanytime we deviate from that
(39:22):
plan, it can be challenging.
It is okay to be sad about that, right, and I think a lot of
parents feel guilty for that,and there's going to be a lot of
things you're going to feelguilty for.
As a parent, your feelingsshould never be one of them.
You can feel whatever you feel.
Your actions are what matter.
(39:44):
How you respond to thosefeelings matters.
Nailings matters.
The other thing that I wouldsay is you have to remember that
it is a marathon and not asprint, that you're going to be
in the parenting game forprobably a little bit longer
than you planned on beingactively involved.
(40:05):
You may have to be a little bitmore hands-on than you wanted.
You have now a new full-timejob which is navigating
therapies and appointments andschooling challenges, and it's
okay to look at the totality ofthat and to be like not
necessarily what I signed up for.
Take a breath, take a breatherand then get your head in the
(40:28):
game, because it is what yourlife is now and there will be
times where you feel like givingup and I would encourage you to
try to set some boundaries andsome rules around what feels
good for your family In doingthat.
This is really important If youever have questions In doing
(40:50):
that, this is really importantIf you ever have questions.
The autism parenting spaces area wonderful place to go for
resources, to get support, toget help, to get ideas.
If you ever question what youshould be doing for your
autistic child, the best placeyou can.
There's two really good places.
Number one is that autisticchild Pay attention to what they
need, pay attention to whatworks, pay attention to what
(41:13):
lights them up and if they'renot able to kind of give you a
heads up on what is working forthem, for whatever reason, talk
to autistic adults.
There are enough places online.
There are enough people thatare focused on helping parents
parent.
It's not the kind of work I do,but there is enough people who
(41:34):
do that work that you can almostalways find a good workaround
solution.
The last thing I would say isfocus on strengths-based
approaches, right.
So don't listen to thosedoctors that say they're never
going to speak.
Get them into speech therapy,right.
An autistic person intuitivelydoesn't really often understand
(41:58):
what's going on with their bodyand they like, even now, I can
never tell when I'm hungry.
You know, is like a 47 year oldadult lady who's responsible
for a whole house and two kidsand a dog and like I can feed
everybody else.
But do I ever stop and say whenwas the last time you had food?
No, I don't.
Speaker 1 (42:16):
Um, yeah, it's funny, I don't do that at 52.
Speaker 2 (42:19):
So I don't they're going to need help for their
whole life in various ways.
They're never going to be afully independent.
Now, oh, I say that, and itsounds bad.
When I say they're never goingto be a fully independent person
, I say it in the way of likenone of us are ever truly
independent.
They may need reminder apps ontheir phone to beat right.
(42:40):
They may need someone to helppay their bills, not in the
sense of earning money, but inreminding them to do it.
They may need total supportsthe rest of their life.
You really don't know.
But getting appropriate therapythat meets their needs when
they're younger goes a reallylong way towards supporting them
(43:00):
.
And the last thing I would sayis, just because it is the in
the U S at least, it really isthe only thing that most doctors
will tell parents to do, andit's ABA therapy, uh, which is
applied behavior analysistherapy.
Be really aware of what you'regetting yourself into, uh, with
(43:21):
that, with any agency thatoffers that to you, um, it is
often not a great choice for alot of families and I don't
think it should be anyone'sfirst approach.
It is what insurance pays forand it's what's been studied and
tested, um, but it has beenvery, very harmful to a lot of
(43:42):
adult autistics, and beforeanyone does that, I would just
encourage them to look into thata little bit more.
Speaker 1 (43:48):
Okay, yeah, that's good advice, karen.
How do you, how do you definehope?
Speaker 2 (43:55):
Oh my gosh, it's so funny.
My former therapist and formerbecause she retired we used to
have this running joke abouthope and anytime I said I was
hopeful, something would happen.
So for a long time my body, mynervous system, didn't even feel
comfortable to hypothesizeabout hope.
Oh, that's funny.
(44:17):
Right now, hope feels like goodthings are going to happen, and
it may not be what I want, butI'm hopeful that it's what I
need and that we're on the righttrack for myself and for my
kids and for my family, andwe're doing the best we have
with what we have, and hope justmeans that better things are
going to be out there for us aswe continue to just walk this
(44:39):
path, doing the best that we can.
Speaker 1 (44:41):
I love that.
I love that you've spent timewith me.
Where can people find you?
Connect with you, be a part ofthis beautiful community you've
created.
Speaker 2 (44:49):
Yeah, thank you.
It's the self-care supportsquad on Substack and it's
actually karencasosubstackcomand we are excited.
I'm kind of changing things upa bit to shift my focus from
just helping parents ofneurodivergent kids to helping
parents who probably also haveneurodivergent kids but
navigating kind of this midlifetransition and managing family
(45:12):
relationships on both sides youryounger generation and your
elder generation when we're notalways as well supported as we
would like to be.
Speaker 1 (45:23):
You are.
You're doing extraordinary workand I am so grateful for the
time you have taken to haveconversation with me and putting
yourself out there and makingsure that people are feeling
seen and loved and supported,and I, as a mother, that means
(45:43):
so much.
As a woman who loves to supportother women and other mothers,
I am incredibly grateful for thework you're doing.
So thank you and thank you forbeing here.
I really appreciate it.
Thanks, danielle, thank you andfriends, thank you for spending
time with Karen and I today.
(46:04):
I hope that Hope visited youwell today and that if our
conversation resonated, you willturn around and share it with
the people you know and love andthat you will come back and
visit us again sometime soon andbetween now and then, you will
take very good care of yourself.
Take care.
Naturally, it's important tothank the people who support and
(46:29):
sponsor the podcast.
This episode is supported byChris Dulley, a trusted criminal
defense attorney and friend ofmine here in St Louis, who
believes in second chances andsolid representation.
Whether you're facing a DWI,felony or traffic issue, chris
handles your case personallywith clarity, compassion and
over 15 years of experience.
When things feel uncertain, ithelps to have someone steady in
(46:52):
your corner.
Call 314-384-4000 or314-DUI-HELP, or you can visit
dullylawfirmcom to schedule yourfree consultation.
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