September 20, 2023 • 42 mins
ETB 54: What does it really mean to be a parent of a child with autism? How do you navigate the challenges and celebrate the milestones? Join us on a deeply personal journey with Heather, a resilient mother who opens her heart about her experiences raising her son, Chase, who was diagnosed with autism at a tender age of 2.5 years.
Currently a stay-at-home mom who transitioned to homeschooling Chase after working as a para in schools, Heather offers unique insights into the world of children with special needs. She speaks about the bond she shares with her son, and how she has juggled through the challenges of his adolescence, including medication struggles and the tricky terrain of puberty.
As our conversation unfolds, Heather candidly discusses the aggressive behaviors Chase displays and the strategies she has employed to manage these situations. She underlines the importance of consistency, external intervention and support, a key aspect often overlooked. . This episode is a testament to Heather's resilient spirit and unconditional love for her son, delivering a message of hope, insight, and valuable experiences for parents facing similar challenges. This is a conversation you won't want to miss.
Join us to understand the realities, the hardships, and the triumphs of parenting a child with autism – a story told by a mother who has walked the path.
Connect with Heather:
Chase_sam@live.com
Training that Emphasizes Safety, Consistency, and Restraints as a Last Resort
https://www.crisisprevention.com/Blog/physical-restraints-as-a-last-resort
Christina Sullivan Foundation
https://www.christinasullivanfoundation.org/
Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Hey there, I'm Sandy Deppish, and this is the Embrace
the Blessing podcast.
Each week, I talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips.
If you want to be inspired andencouraged, stick around.
(00:28):
Let's walk the road lesstraveled together.
Well, thank you for being here.
It's such a delight for me tohave you on the show.
I've known you for a few yearsnow, and I know that you have a
child that's kind of similar tomine, and so I'm excited for you
(00:51):
to share what your journey hasbeen like.
And what I would love for youto do first is to introduce
yourself and tell us a littlebit about you.
Speaker 2 (00:58):
Sure, my name is Heather, I'm 42.
I have two children.
One is 23.
One is 19.
My daughter is currentlytraveling the world with her
boyfriend Lucky Her, so we don'tget to see her at all, but it's
great for her.
Her early 20s.
(01:19):
That's what you're meant to do,so it's a big blessing that she
gets to do this.
My son was diagnosed when hewas two and a half with autism.
It was a whole new world for us.
I had never even really heardof autism outside of like Rain
man yes, no, anybody with autism.
(01:41):
It was a very challenging newthing, and so it definitely was
a new embarkment.
I stayed at home with him whenhe was little.
When he started going to school, I was at a loss of what to do
all day, so that's when Istarted getting into education
(02:03):
and I started working at theschools as a para.
Speaker 1 (02:05):
And you were amazing.
You were an awesome para.
That's where I met you and Ijust loved it.
Yes, yes.
Speaker 2 (02:12):
Most people actually were trying to figure out if I
was the teacher in theclassrooms.
I thought you were.
Speaker 1 (02:18):
I thought you were.
You had that take control kindof thing and you just had a
really great connection with thekids.
Probably because of yourexperience with your own son at
home, it was just a natural wayfor you to handle those kids.
Speaker 2 (02:30):
It is.
I'm very natural with them andI still am, even though I
haven't talked in about fouryears now.
I just get around them and it'sjust an instant bond and I just
have a real whisper about themand I get along with most of the
kids and I just connect withthem on a level that I think a
lot of people are missing.
Speaker 1 (02:51):
Yes, it's really cool to watch.
Well, let me back up for asecond and ask you.
So you said two, two and a half, what were you seeing that made
?
Well, you weren't even sureabout autism, but what were you
thinking and seeing that madeyou pursue kind of a diagnosis,
I guess.
Speaker 2 (03:08):
So when he was a year old, he started humming and it
was very strange because itwasn't, you know, any type of
like abnormal humming, but hedid it 24, seven.
He hummed while he was laughing, while he was crying, while he
was eating, while he wassleeping, wow.
And it was just continuous andit was to the point, like after
(03:29):
a year, where it was driving uscrazy, where it's like either
scream or shut up.
Speaker 1 (03:38):
Was it a quiet hum Like a like a just off timer?
Speaker 2 (03:41):
Wow, yeah, so you hear it, but it wasn't loud and
it wasn't quiet.
Speaker 1 (03:49):
It was like this just constant noise, and it was just
constant Wow, that would bechallenging to have to hear that
all the time.
Speaker 2 (03:58):
Yes, all the time, 24 , seven.
I mean, he did not ever stop.
It was quite strange.
And then when he was two, hewasn't hitting any extra
milestones, he wasn't talking,he wasn't mimicking, he wasn't
making eye contact.
And so we had gone to thepediatrician and he said well,
(04:19):
you know, it's still a littleearly.
We were in a very small town,there wasn't a lot of
specialists in the area.
So he said let's wait a littlebit longer.
And at two and a half we hadhis hearing checked and they had
told us that he was 30 percentdeath in both ears.
And so we were like well, thatexplains the humming, that
explains the not talking, thatexplains the, you know, not
(04:41):
communicating with us andignoring us.
So we got him into some grouptherapies for small children to
socialize him, and we were doingspeech therapy and it was the
group teacher that said I thinkthere's something else wrong
with him.
I said can I recommend you tohave him tested for autism?
(05:02):
And yeah, so there was.
We lived in Idaho at the time.
There was one doctor whodiagnosed autism in the whole
state of Idaho Exactly.
Speaker 1 (05:15):
It wasn't that long ago.
Speaker 2 (05:18):
Well, we're looking at 17 years and you got to
remember the population of Idahois like two million, oh, and if
you cut that population down by, you know kids and adults.
And so, yeah, there was onedoctor.
I don't know how many there arenow, but when he was diagnosed
(05:39):
there was one doctor in thewhole state that could diagnose
him autistic.
Maybe coming here because youhear about parents talk about
how the school diagnosis theirkids with autism and I'm like
school can't diagnose kids withautism, it has to be a doctor.
Speaker 1 (05:54):
Yeah, schools can't do that and teachers are
forbidden from even hinting thattheir child in their classroom
might have autism.
They have to kind of suggestthat, hey, we're seeing some
things, maybe you want to checkthis out, even though they
usually know in their gut thatthat's what's going on.
But, yeah, not allowed to saythat.
Speaker 2 (06:12):
Yeah, so that's a whole new world for us, moving
here to Texas, and we've beenhere in Texas now for eight
years.
We moved when Chasetransitioned out of elementary
school at fifth grade and westarted sixth grade here.
So Okay.
Speaker 1 (06:30):
So that leads me to my next question.
Tell well, wait, I want to backup for a second.
So the humming, how did thateventually stop?
He just stopped at age two,really, he just stopped.
Yeah, hallelujah.
So you think it was theintervention of the speech
therapy, or that didn't cometill later?
Speaker 2 (06:48):
Well, we started speech therapy at about 2 and 1
half, so it wasn't therapy thatstopped it.
I have no idea.
I mean it's just common ownsthat just can't or ever will be
explained.
Speaker 1 (07:02):
But thankfully it stopped.
Speaker 2 (07:04):
yes, yes, because that was the most difficult part
of him being a baby was thehumming.
Speaker 1 (07:11):
Oh yeah, I can't even imagine Well, so tell us a
little bit more about Chase, whohe is, what he's like now that
he's older he loves to draw.
Speaker 2 (07:23):
He is super awesome at drawing.
He's been drawing since he waslittle.
He loves to do all kinds ofsports.
He's super, super athletic.
That was one of the greatbenefits of us moving from Idaho
here, because Idaho does nothave special Olympics, they do
not have special teams, they donot have special groups Really
(07:45):
Nothing for kids with specialneeds, especially in school age.
So, and once they become anadult, it's either you go to a
group home or you stay home.
There are no day habs.
There are no day cares.
Day cares usually won't takechildren with special needs.
(08:06):
Yeah, it's very, very limitedin the area we were at.
Speaker 1 (08:11):
Well, so then, when you had him diagnosed and he got
the label of autism around two,two and a half, what was your
reaction to that?
And then I mean, if there arenot any services available, what
did they do to support you?
Speaker 2 (08:26):
There was no state support.
I had school support.
So he obviously went to speechtherapy and occupational therapy
.
They did that was covered byMedicaid.
Actually, until he was eight wejust had personal insurance and
paid for everything ourselvesbecause we made too much money
(08:47):
to qualify for Medicaid.
So it wasn't until he was eightthat the school pretty much
pushed me to get him on SocialSecurity and pushed me to get
him on Medicaid.
So they bill for him.
Speaker 1 (09:01):
Right, right, because if those of you, parents that
have a child with a disabilitythat's in a public school system
, you don't, if you're not aware, your school district is
getting money from Medicaidbecause your child has a
Medicaid waiver.
And that's one of the firstquestions they'll usually ask
you in an art meeting Do youhave a Medicaid waiver?
And that's why they want toknow, because that's more money
in their pocket, which myinterpretation of that is.
(09:24):
Then I can request and reallyadvocate for more services
because they're getting moremoney from my kid.
Well, not anymore, he's out ofschool, but you know what I mean
.
When he was in school, well,what was your reaction to the
diagnosis of autism?
Speaker 2 (09:41):
It made a lot of sense once I learned what autism
was.
I had to do a lot of researchbecause, like I said, he didn't
seem like a rainman to me, andhe still doesn't, and back then
autism was one in 10,000.
Now, if you can believe it, Ibelieve it's one in 35.
Speaker 1 (10:01):
I don't know what the latest statistics are, but I
know it's gotten more prevalent.
Speaker 2 (10:06):
Be five now, which is just insane to me to think
about.
Yeah, but it was.
It was born in 10,000 when hewas diagnosed, and so there
definitely was this awakening ofit, but it was still so rare at
that time, especially we lived.
We were very fortunate.
We lived in a very, very smallcommunity.
(10:27):
Chase's preschool had him, alittle girl with a copular and
four other students with delayedabilities.
They just needed more of ajumpstart from low income
families and families that hadmoved from Mexico because we
were in a big farming communityso they need help learning
(10:50):
English and stuff like that.
And so that's where he went topreschool and then he always had
a one on one paraprofessionalwith him.
He went to Gen Ed everything upthrough fifth grade.
He went to a Gen Ed.
Kindergarten.
He went to a Gen Ed first,second, third, fourth, fifth,
and that went well.
Well, most of the time, until wewould get.
(11:16):
Once in a while we'd get like anew teacher.
And I remember second gradeteacher.
She was new to teaching and shewas such a gun hoe, free
spirited, she wanted to touchall the children and it was just
like no, he has aparaprofessional for a reason.
Please don't mess with him.
Yeah yeah, she's known him forfive years.
Like don't rock the boat.
Speaker 1 (11:38):
Right, right.
Oh, I'm sure she learned prettyquickly.
Speaker 2 (11:42):
Yes, yes, she did.
After Chase blew up on hertwice, she was like OK, we're
just going to let theparaprofessional handle him, and
I've always tracked hisbehaviors.
Consistency has been hisbiggest thing for controlling
behaviors.
If you don't have consistency,then they don't know what to
expect.
Speaker 1 (12:03):
Right.
So is there some level ofcomfort in knowing what the
boundaries are?
Speaker 2 (12:07):
Yes, yeah.
So teachers always had dailyjournals with me on how his day
went, and if he had a bad day hedidn't get rewarded.
In the evening he didn't gethis preferred activities.
Speaker 1 (12:18):
And did that work.
Was that successful for helpingto shape his behavior?
Speaker 2 (12:22):
Oh, yes, always yeah, oh yes, and even to the point
where in high school it became aproblem because he would know
he messed up, so then hewouldn't let the teachers write
in his book, and so that wouldbe.
Another blowout was no, I'm notgiving you my book because
(12:43):
you're going to tell my mom Iwas bad.
I already know I was bad andshe doesn't need to know.
Speaker 1 (12:49):
Let's keep this between you and me.
Well before we get into some ofthe behaviors, let's talk about
your greatest joy in parentingGrace.
Speaker 2 (13:01):
Oh, he's awesome.
He is so funny.
He can crack people up, heloves to tell jokes, he loves to
goof off, he loves to act outscenes, he loves talking about
birds.
He gets these passions abouthim and he goes gun-ho.
He once was Charlie Brown foran entire year, and he only wore
(13:25):
the yellow shirt with thestripe.
He wore Charlie Brown shoes.
He would only wear shorts orpants, to the point where he
actually plucked out all hiseyebrows and eyelashes.
Wow, and he made everybody callhim Charlie Brown for almost a
year.
That's so funny.
Yeah, when I met my currenthusband, chase was Charlie Brown
(13:47):
.
And one day Chase just walksinto the room it was actually
over Christmas break Walked intothe room.
I said morning, charlie Brown.
He goes.
Oh, no more Charlie Brown, justthe Chase.
And he's never been CharlieBrown again.
Speaker 1 (14:04):
Wow, that's so fascinating.
Yeah, yeah, but he dove into it, you know, with all of his
passion.
That's amazing.
Speaker 2 (14:12):
All of his clothes were Charlie Brown clothes.
He never wore anything else.
We had six Charlie Brown shirts.
We had four pairs of blueshorts and, yeah, it was only
Charlie Brown.
And he still loves peanuts, theyou know the movie and things
like that.
But he's Charlie Brown anymore,just the Chase.
But the bad thing is is, sincethat happened, you can only call
(14:36):
him Chase.
He doesn't like any other petnames.
Speaker 1 (14:39):
Yeah.
Speaker 2 (14:40):
Interesting.
Speaker 1 (14:41):
Yeah, and how nice that people went along with that
.
Right, I mean I'm assumingschool and the teachers and
everything, or did they?
Speaker 2 (14:48):
Teachers did not.
They thought it wasinappropriate, they thought it
wasn't age appropriate to call ajunior high kid Charlie Brown.
I think that they kind ofdetoured him in some ways of him
outgrowing it sooner than whathe would have.
Speaker 1 (15:04):
Yeah.
Speaker 2 (15:05):
Yeah, they got on board with.
A lot of his behaviors injunior high were because they
were calling him Chaston onCharlie Brown.
Speaker 1 (15:13):
Because in his, in his mind, he was Charlie Brown.
Yeah, and they weren'taccepting that.
Speaker 2 (15:18):
I mean, it wasn't like he had on a mask, it wasn't
like he was, you know, actingout in school.
He just that was just his name.
That's what he just wanted tobe called.
Speaker 1 (15:31):
Right.
Speaker 2 (15:33):
So it was the age appropriate thing that schools
try to push around.
Here is very difficult becauseyou go age appropriate.
Well, which age are you talkingabout?
Are you talking physical age ormental age?
Right, and because there's abig difference in a lot of our
kiddos with their physical ageand mental age.
And yes, aspects, they do needto have certain guidelines for
(15:56):
their physical age, especiallylike in puberty and in high
school, and you know things likeshaving and you know the
different situations that comeup with puberty.
But, on the other hand, why dowe have to stop letting them
watch cartoons?
Speaker 1 (16:12):
Exactly.
Speaker 2 (16:13):
Why can't they still watch preschool shows, if
preschool shows is what makesthem happy and they love it?
Speaker 1 (16:19):
You know, I've been reading a lot of books lately
about individuals on the autismspectrum who are non-speakers
and now have learned tocommunicate through spelling, to
communicate.
And these guys are brilliant.
I mean, they know things wellbeyond what anybody ever
expected them to fullycomprehend.
They're totally in there.
They just because of a proxy,they're not able.
There's a body brain disconnectand they're not able to express
(16:41):
themselves.
Some of them are like,incredibly intelligent.
A lot of them are incrediblyintelligent and they're able to
write books with a keyboard,typing, you know, the entire
book themselves or with somesupport.
They still love watching Elmo.
They still love Sesame Street.
They still carry little stuff,the animals around.
So you're right.
I mean there's two separatesides to them, but it doesn't
(17:04):
mean that you have to justaccept one and reject the other.
That's who they are.
You have to embrace that, youknow.
Yeah.
Speaker 2 (17:11):
So it was very sad the way that some of the public
school you know took the wholeage appropriate thing, which is
a big part of why I decided tohomeschool his last several
years and why he doesn't attendan 18 plus program, transition
program.
Speaker 1 (17:27):
So which is interesting because was yours 18
plus.
Speaker 2 (17:31):
Yeah, the class I taught was 18 plus.
Speaker 1 (17:34):
I thought so, and you guys, you did an amazing job in
that class, but yeah, youwouldn't be in there being his
teacher.
So, yeah, yeah.
Speaker 2 (17:42):
It really makes it really easy to guide him through
life, though, because I've I'veactually taught all levels,
from preschool all the way up to18 plus.
Throughout my career I had beenin every level of education.
Speaker 1 (17:59):
Okay, wow.
So yeah, you're the best onefor the job.
Speaker 2 (18:02):
Yeah, I have with all ages.
Speaker 1 (18:07):
Yeah, that's fantastic.
Tell us about a time and I'msure it's not just a time, but
sometimes that have been reallydifficult.
Puberty, oh my goodness, with acapital P.
Yes, yes, tell us about that.
All titles, yeah, what was sodifficult about puberty, heather
(18:28):
?
Speaker 2 (18:29):
So he had a very small, very brief aggression
behavior.
When he was in first grade wedid heavy intensity on ABA
therapy and he outgrew it likevery rapidly.
It was like, okay, now this iswhat I'm expected to do, this is
what I get.
That's where the consistencyplayed in and that's where, like
(18:50):
, the daily log started and itworked very well where puberty
hit and hormones started ragingand testosterone level spiked
and we've been stuck in thisrage.
Speaker 1 (19:04):
Wait, let me ask you because puberty is different
nowadays than it was when andI'm much older than you but then
when I was growing up Now itseems like it happened so much
sooner and I feel like for myson I wasn't ready for puberty
with him and it was like prettyyoung.
Do you remember for Chase aboutwhat age that was?
Speaker 2 (19:21):
12 and a half.
Speaker 1 (19:23):
Yeah.
Speaker 2 (19:23):
Yep, I remember exactly.
It was 12 and a half.
I don't remember the exactmonth.
I stopped counting months onhim way longer.
And you know, you just startseeing the signs.
You know the hair in thearmpits, the darkening little
mustache, and you're like, oh,how cute.
And he starts getting the legair and you're like, oh, you're
(19:43):
becoming a little man.
And then all of a sudden he'slike screaming at you and I'm
like, wait a minute, no, wedon't do this.
And it was to the point where bythe time he was 13 and a half
almost 14, he was attacking usphysically four to five times a
day.
So we decided to go heavy onthe medications because we had
(20:08):
tried, when he hit 12 and a half, we had tried to slowly
incorporating a few medications,a few light medications, to see
if that helped him with hismood.
We tried some likeantidepressants and we tried
some mood stabilizers and but wewent very conservative, very
conservative.
And then it was a point where Iwas scared for my daughter's
(20:30):
safety, because she's prettysmall.
So I was really concerned forher safety and so we went heavy
on the medication and at onepoint he was taking 14 different
medications six times a day.
Speaker 1 (20:48):
Whoa.
Speaker 2 (20:50):
Yes, yeah.
Now we have to nine medicationsEight are daily, one is an
emergency and we're still doingfive times a day because we
spread them out throughout theday.
Speaker 1 (21:02):
Right and do you notice a difference being on?
Speaker 2 (21:05):
medication.
Oh, yes, yes, yes.
So we've, ever since he wasprobably in first or second
grade, we've had him on astimulant such as like Adderall,
so to help him during schooltime hours, and that always
worked wonders.
And then puberty hitting.
Now if we miss a medication, wecan tell.
(21:27):
We can tell instantly.
There are three or four thatare particularly more important
than the others.
I think the others just helpboost, because I Don't want a
zombie kid.
I love seeing him play, I loveseeing him active, I love his
personality.
So he's still on relatively lowdoses of a lot of medication.
(21:50):
Compared to how long he's beenon some and compared to his age
and his weight, we still have onlow doses.
So he takes more of certainones.
I really feel like for critical, like we can't live without
them, and the others are justkind of like there to help to
keep the Dose low right.
Speaker 1 (22:09):
I remember when my son was very young, I was the
mom that said oh, we're nevertaking medication like that's
just you.
You did that too.
That's why we're laughing andand I remember thinking like
there's natural ways to, youknow, handle this type of thing.
We don't need medication.
I'm so, so, totally againstthat.
And then life became extremelyhard and I thought you know,
(22:32):
this isn't about me and mystance on medication.
This is about what it must feellike to walk around in his body
and be constantly wired andanxious and Hyper and not able
to control that.
This is something that's gonnahelp him calm and have a better
quality of life.
So if you're on the fence aboutmedication, you might want to
(22:53):
think about it from the thechild's perspective or the young
adults perspective, because Ithink that changes your outlook
a little bit at least it didmine and it's made a world of
difference.
Speaker 2 (23:02):
Yeah, it really does, and if there was some natural
remedy to like help him, I wouldtry it, and we did try it.
When he was about Four or five,jenny McCarthy came out with
her book about her son, evan yes, I read it.
And the Dan doctors defeatautism.
(23:23):
Now we were spending about abrand a month Going to Utah
because we were in Idaho andthere was nobody in Idaho.
So we had to go to Utah, saltLake City, to find a Dan doctor
and we were spending aboutthousand dollars a month on all
these supplements.
The doctor visits, the specialdiets he wanted to take away.
(23:47):
You want to take away tomatoes,which is my son's favorite food
.
This kid, this kid would doanything for a tomato.
I mean over sugar, over icecream, over Toys, over anything.
This kid loves tomatoes.
Wow, that's so interesting.
Yeah, they're his ultimatefavorite.
And he wanted to take awaytomatoes and I'm like, how am I
(24:11):
gonna do this to my child?
Right, and spent about four orfive months Doing this crazy
insanity.
And, yes, we saw a tiny bit ofdifference, but we also saw,
like, the things that he wasmissing and for us spending a
thousand dollars a month andthat was More than what we were
(24:31):
paying in rent.
Right, that was more than a bigportion of our budget and we're
like, okay, well we're, we werefeeding him, but now we don't
have enough money to eat.
Yeah we all can't afford hisdiet, you know, because it was
no gluten, no dairy.
(24:51):
Well, no casein, right peopleare like try powdered milk and
I'm like, well, can't dopowdered milk, because powdered
milk has Cason in it and andwhen you're in a rural area, I
mean it's kind of hard to findsubstitutes.
There was no whole food storenear us there was.
There was really nothing.
I mean, we our closest grocerystore was 45 miles away.
(25:15):
Oh, that was a regular grocerystore.
Speaker 1 (25:19):
Wow wow.
Yeah, that you guys were ableto sustain that even for a few
months is pretty incredible.
Speaker 2 (25:25):
Yeah, yeah.
So we decided it, just itwasn't for us.
We were just gonna learn how towork with his autism instead of
trying to defeat it.
But now, of course, all theseyears later, I realized you
can't defeat autism.
He's not sick, there is no cure.
Speaker 1 (25:45):
So, yeah, but we went to a Dan doctor too, which was
really interesting.
Josiah was Four because wemoved here when he was three and
same thing I read the book,found a Dan doctor in Houston,
loved this man, loved him.
He was amazing.
But you know, we had five kidsat home.
I wasn't working.
We had one income he had 14.
(26:06):
I believe it was supplements aday.
Nothing could be canned,packaged, everything had to be
organic, made from scratch.
He wanted us to make organicyogurt with goats milk that I
would have to get from Somebodywho had a goat.
You know I'd get their milk andthen strain it with cheese
cloth.
And so many hurdles to gettingto this Level of where we needed
(26:29):
to be with him.
And I tried, I really tried,but you know, doing that with
one kid and then there's fourothers who are waiting for their
food and it was so, soexpensive and it was
overwhelming for me.
That I mean in hindsight.
I'm kind of grateful thishappened, but it was sad at the
time.
Josiah got a stomach bug, um,probably like a month or two
into this and he ended up in thehospital and he lost 10 pounds
(26:51):
in a week because that was oneof the things he wasn't eating.
It had to be, at the time, youknow, all organic, made from
scratch.
Lots of you know fruits andvegetables, and at the time,
just, I was a very picky eaterand so I had to offer him foods
that he rejected.
And so he, you know, I wastelling the doctor he's not
going to eat this stuff and hesaid wait him out.
Eventually he will.
We have a little guy who's noteating and it's tiny, you know
(27:13):
it's like.
So anyway, he ended up in thehospital, lost 10 pounds.
He came home from the hospitaland we said that's it, we're
done.
It had nothing to do with thedandied, it was all because he
had the stomach bug.
But we said this kid can eatwhatever he wants, and we never
went back to it.
So we didn't defeat autismeither.
We still have it, yeah.
Speaker 2 (27:31):
It's crazy how that worked, isn't it?
Speaker 1 (27:33):
Yeah, yeah, it's still here.
So do you have any helpfulhints or tips you use to keep a
positive attitude when thingsget really hard?
Speaker 2 (27:40):
Because I know you've had some really challenging
times positive tips um,consistency, family support, mom
support mom support is thebiggest thing.
We have just recently joined abunch of different foundations
over the last year and a halfand just getting to sit around
(28:00):
and talk to other moms and dadsDon't let me leave dads out,
sorry.
Dads, you're there too, um, andyou guys are just as important.
But just that, that talk, that.
What did you go through thisweekend?
Oh my, thank goodness somebodyelse went through something.
And knowing that we're alldoing our struggles and we all
(28:23):
have our positives and we allhave our negatives, and Yet the
moms are the biggest thing forme right now.
In consistency, because evenstill today I still do a
behavior system with him, eventhough we haven't been in school
and you know, with coveted itwas just him and I home alone
for a long time.
But if he acts out he does notget rewarded and it might have
(28:46):
another fit later, but it's soworth it because it really
controls the behaviors in thelong run.
Speaker 1 (28:54):
So when you mean behaviors and you're saying
acting out, can you describewhat that, what that is?
Speaker 2 (29:00):
Oh, with Chase it starts as a scream.
He'll start screaming, thenhe'll start hitting things.
Like he'll come in and starthitting my bed and then he'll
start kicking things he loves tokick over the trash can and
then eventually gets point wherehe wants to physically fight
(29:22):
people.
Before I broke my ankle, I wasable to restrain him.
My husband has to restrain himand they'll get into what looks
like UFC fighting matches.
Yeah, and I've trained myhusband as much as I possibly
can and he does amazing to holdhim down without actually
hurting him and making sure heholds him in positions that
(29:46):
can't accidentally hurt him.
I highly do not recommendrestraining your child if you
have not had training.
There are so many, so many, somany pressure points where, if
you just put any pound ofpressure, it could seriously do
damage, and a lot of times youwant to hold their arms down,
but you have to watch out forthe lungs and the chest and the
throat and there's very, veryspecific ways you need to
(30:09):
restrain a child, and so I don'trecommend restraining unless
you've been trained.
It's very, very tricky, very,very tricky.
You can so hurt the kid andthat is definitely not what we
want.
We would rather be hurt asparents ourselves than our child
.
I'm to the point now where Ihave to lock myself either in my
room or my bedroom or mybathroom and he breaks down the
(30:32):
doors.
Both my bedroom and bathroomdoor have huge holes in them
right now because it's like howsoon do we want to replace them?
Speaker 1 (30:43):
They're just going to get new holes.
Yeah, so you lock yourself into protect you.
And the whole bit about therestraint too, is when parents
do restrain.
I love your comment I'm so gladyou brought that up is there is
a proper way, a technique andthere's training available, and
I know there's a website.
I'll find it and put the linkin the show notes about that.
But there is a way to properlydo it and it's not because
(31:05):
you're, it's self-preservation,it's to protect you and also to
protect your child fromthemselves, from self-harm,
because sometimes when they rage, it turns inward on themselves.
I know it has in our casebefore.
So you lock yourself in to keepyourself safe.
Does he eventually wind down,wear down?
(31:26):
How do you know when it's safeto come out?
Speaker 2 (31:29):
He does, he tires himself out.
Usually he'll fall asleep.
If I can get, we have a specialmedicine that is supposed to be
fast acting.
But if I can't physically getto the medication to give it to
him, then he doesn't take it.
Sometimes I can tell him to gotake it.
If I've been like in thebathroom and he's started to
(31:50):
calm down a little bit, but notfully there, I can tell him to
go take the medication, andsometimes he will, sometimes he
won't.
But yeah, I just have to waithim out.
Wow.
Speaker 1 (32:01):
And so he just eventually wears himself out.
Does he have something he cando like punch a pillow?
You know, I'm sure you've heardall those things Anything like
that that you might tell atypically developing child who's
having a difficult time to helpalleviate some of that
frustration and anger?
Well, he does.
That's why.
Speaker 2 (32:18):
I think kind of hitting the bed, because we have
talked about like hitting softthings, start punching beds and
things like that, and that'swhen I usually know it's getting
ready to escalate.
Yeah, I mean having a thirdperson.
A third party is always helpful.
I've called sometimes his dadand I'm like here, talk to your
(32:40):
dad, and dad calm down becausehe's not mad at dad.
You got to find the otherperson's not already upset with
as an outside source Hardsometimes for like single moms
or people that don't have a tonof support.
I'm very fortunate, but dadworks out a lot, so a phone call
(33:01):
sometimes helps.
But yeah, just having thatinterruption of oh wait, there's
somebody else here witnessingwhat's going on, right, and even
just somebody to distract thechild, really throw them out of
their anger sense and back intothe reality of oh wait, what am
I doing?
Do I really want to be doingthis?
Speaker 1 (33:23):
Right.
Speaker 2 (33:24):
Wow.
Speaker 1 (33:25):
And you know, somebody who has grown up with a
sibling that had someaggression told me a while back,
many years ago, that 22 seemsto be the age where they start
to grow out of this type ofthing.
And we're just like 21 now.
So I am hanging all my hopes on.
We only have like less than ayear now, you know he'll be 22.
(33:46):
22, yeah, I really think 22,like suddenly he's going to be a
different guy.
I know I'm fooling myself, butthe point is that they
eventually mature to an age andmaybe it's hormonal or something
where things settle down, andI'm really hoping that's the
case for any of us who havechildren that really have some
issues with, you know, thesekind of behaviors.
(34:07):
I'm really hoping there'ssomething to that.
Chase is 19.
Chase is 19.
Speaker 2 (34:12):
And it's so funny you say 22 because that's what I
have in my head, because forwhatever, okay, boys go 10 years
in puberty.
He started at 12 and a half.
Speaker 1 (34:22):
So there must be something to it.
We'll have to get back on whenhe's 22 and we'll talk about it
then.
So is there a product or aresource you can share that has
impacted your world in apositive way, something that's
really been?
I mean, it sounds to me likethe consequences that you use
for him have been reallyeffective, but is there anything
else?
Speaker 2 (34:39):
ABA therapy is crucial, especially when the
kids are young.
Aba therapy sets the foundationof what is expected and how to
get your child to achieve it.
And parents please sit in onthe therapies.
The ABA therapy is not one houra week, it is 24 hours a day.
That is the biggest thing withspeech therapy, occupational,
(35:04):
any type of therapies that yourchild is doing.
You have to be a part of thatbecause they're not going to
magically start talking by goingto a speech therapist for 30
minutes a week.
You have to reinforce everythingthat they're doing.
So medication I know it's a bigcontroversy, but without
medication I wouldn't be able tohave him in the home.
(35:24):
The resource groups,foundations, having support out.
There is another big, big oneChristina Sullivan Foundation
Amazing.
They have been such a big, bigsupport and help, not just only
in getting Chase active andmeeting new friends, but for me
(35:48):
it's just an incredible journeywith them and so, yeah, yeah,
the Christina SullivanFoundation is in Galveston and
League City and they just havesuch a heart for anybody that
has differing abilities and theydo adaptive and inclusive
sports.
Speaker 1 (36:06):
They have students from UTMB in Galveston that are
OT students who oftentimes arepaired up with individuals with
disabilities to do things liketennis and botchy ball and
volleyball and golf and theyjust did fishing, fishing, yes,
yes, yes.
And I remember hearing aboutthis from some of the other moms
years ago and seeing things onFacebook and thinking, wow, how
(36:30):
nice for these families thatthey have something for their
kid.
Josiah could never do this.
And some of the moms heard mesaying like, yeah, that's just.
We could never.
I mean, and we still strugglewith it.
Don't get me wrong, but theidea is that they are so
welcoming and the moms looked atme and they go it's adaptive,
they will work around Josiah.
If he's having issues, theywill work around it.
(36:51):
And one of the botchy balltournament or one of the botchy
ball days that we went to lastyear there were individuals in
wheelchairs and they havespecial ramps, kind of like for
bowling, that they pull up tothe wheelchair and the
individuals able to put the ballright on the ramp and push it
down.
Like so amazing.
So, yeah, incredible, I lovethat idea.
So find foundation, findsupport groups.
(37:11):
Those things are incredible.
What are your hopes and dreamsfor the future?
Speaker 2 (37:17):
Well, um, you know, after puberty is what we're
really striving for right now tomake sure that this aggression
and anger and stuff is justtestosterone jolts.
Right, that's our biggest hopethat puberty ends and magically
he goes back to this fun, loving, cute little boy.
(37:38):
Well, young man now, right, but, yeah, that's that's, that's
our, our biggest hope right now.
Eventually, way down the road,I would love to see him in like
a guest house out of the homebut so close by, perhaps like a
mother-in-law quarters or anapartment garage or something
like that, where he can beIndependent but yet still very,
(38:02):
very close.
Right, I think, is my nextlong-term goal for him to Do
something like that, or eveneven have like a buddy that he
could have an apartment withclose by, yeah, where both
parents can look in though.
Yeah, that's that's mylong-term goal.
My hope is puberty ends all theaggression.
Speaker 1 (38:31):
What about potential employment opportunities?
Do you see any of that in hisfuture Um?
Speaker 2 (38:37):
Not with way his behavior is now I pretty much 22
post 22.
If he can get his aggression andhis behaviors under control, he
would definitely be employable.
He is so smart, he's so funny,he has so many things that he
(38:59):
can do that he can do well.
I know a lot of autistic peoplelike reputation and so like
they found them, jobs andFactories and assembly lines and
things like that.
Chase typically gets bored withthose types of things.
I think he likes things thatare Similar but not repetitive,
(39:20):
mm-hmm, like he knows what toexpect, but it might be just a
little bit different each timeright.
Speaker 1 (39:26):
So yeah something like that.
Yeah, that sounds great.
So if you were sitting withsomeone who is just about to
walk in your shoes and Live thelife you have lived oh, I see
your hands going up over yourhead.
They're gonna walk the samepath that you've walked.
What encouragement would yougive them?
Don't give up.
Speaker 2 (39:47):
There is light at the end of the tunnel.
There are so many peoplewilling to help.
You just have to ask Mm-hmm.
If you don't ask for help,people are not gonna know you
need help.
Speaker 1 (39:58):
Right.
Speaker 2 (39:58):
Don't isolate yourself, because that really
hinders so many extra problems,and just stay Consistent,
because you're not always gonnabe positive.
There are some days I just Sitand cry in the shower for an
hour.
There are days where I want topull out on my hair, and that's
(40:20):
okay.
It's okay to not be okay, and Iknow that's a big cliche now,
but just remember to keep movingforward and Consistency I
preach to everybody is justconsistency.
Speaker 1 (40:33):
Yeah, that's so important.
They need to know boundariesand they need to know that
you're gonna hold the line tothose boundaries and not Hold it
for three times but the fourthtime just get tired and let them
go, because then what have theylearned?
Speaker 2 (40:45):
You know they learned oh, mom's gonna let go four or
five, and then the next timethey're like oh Well, she let go
.
So oh, wait it out till six.
Oh, mom, let go at six.
Guess what next time?
They're gonna go till 10, theyknow eventually going to.
Speaker 1 (40:58):
Yeah, exactly, consistency is key.
That's awesome.
Well, I know it's not been aneasy road for you and I
appreciate you sharing thatbecause I think Especially a lot
of the parents that have beenon the podcast they don't or at
least so far they have not hadthe life experiences with their
children that you and I have had, and so I think there's more
people out there that areWalking this path and I think
(41:20):
it's encouraging them for themto hear.
There are times when it isreally really hard, but you do
get through it.
You don't think so in themoment, yes, and you take long
car rides sometimes and sob thewhole time and you think, oh, my
gosh, this is horrendous, howam I ever gonna survive this?
But you do, miraculously, bythe grace of God, you do, and
then you're able to sit onthings like this and tell other
people you can do it too.
(41:41):
22 is around the bend 22,that's number.
When they turn 22.
If it doesn't happen, I'm goingto be a little disappointed,
but no, I think it's gonna work.
Thank you so much for being on.
I really appreciate yourinsight and your willingness to
share everything that you'veexperienced it's been.
(42:02):
I think it's gonna be verybeneficial for other parents.
Speaker 2 (42:05):
Absolutely Thanks for having me.
Speaker 1 (42:07):
Thanks for listening to the embrace the blessing
podcast.
Visit embrace the blessing calmslash podcast for show notes
and links to any resourcesmentioned.
If this has been beneficial toyou, please share it with a
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
just like you.
Hey there, I'm Sandy Deppish, and this is the Embrace
the Blessing podcast.
Each week, I talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips.
If you want to be inspired andencouraged, stick around.
(00:28):
Let's walk the road lesstraveled together.
Well, thank you for being here.
It's such a delight for me tohave you on the show.
I've known you for a few yearsnow, and I know that you have a
child that's kind of similar tomine, and so I'm excited for you
(00:51):
to share what your journey hasbeen like.
And what I would love for youto do first is to introduce
yourself and tell us a littlebit about you.
Speaker 2 (00:58):
Sure, my name is Heather, I'm 42.
I have two children.
One is 23.
One is 19.
My daughter is currentlytraveling the world with her
boyfriend Lucky Her, so we don'tget to see her at all, but it's
great for her.
Her early 20s.
(01:19):
That's what you're meant to do,so it's a big blessing that she
gets to do this.
My son was diagnosed when hewas two and a half with autism.
It was a whole new world for us.
I had never even really heardof autism outside of like Rain
man yes, no, anybody with autism.
(01:41):
It was a very challenging newthing, and so it definitely was
a new embarkment.
I stayed at home with him whenhe was little.
When he started going to school, I was at a loss of what to do
all day, so that's when Istarted getting into education
(02:03):
and I started working at theschools as a para.
Speaker 1 (02:05):
And you were amazing.
You were an awesome para.
That's where I met you and Ijust loved it.
Yes, yes.
Speaker 2 (02:12):
Most people actually were trying to figure out if I
was the teacher in theclassrooms.
I thought you were.
Speaker 1 (02:18):
I thought you were.
You had that take control kindof thing and you just had a
really great connection with thekids.
Probably because of yourexperience with your own son at
home, it was just a natural wayfor you to handle those kids.
Speaker 2 (02:30):
It is.
I'm very natural with them andI still am, even though I
haven't talked in about fouryears now.
I just get around them and it'sjust an instant bond and I just
have a real whisper about themand I get along with most of the
kids and I just connect withthem on a level that I think a
lot of people are missing.
Speaker 1 (02:51):
Yes, it's really cool to watch.
Well, let me back up for asecond and ask you.
So you said two, two and a half, what were you seeing that made
?
Well, you weren't even sureabout autism, but what were you
thinking and seeing that madeyou pursue kind of a diagnosis,
I guess.
Speaker 2 (03:08):
So when he was a year old, he started humming and it
was very strange because itwasn't, you know, any type of
like abnormal humming, but hedid it 24, seven.
He hummed while he was laughing, while he was crying, while he
was eating, while he wassleeping, wow.
And it was just continuous andit was to the point, like after
(03:29):
a year, where it was driving uscrazy, where it's like either
scream or shut up.
Speaker 1 (03:38):
Was it a quiet hum Like a like a just off timer?
Speaker 2 (03:41):
Wow, yeah, so you hear it, but it wasn't loud and
it wasn't quiet.
Speaker 1 (03:49):
It was like this just constant noise, and it was just
constant Wow, that would bechallenging to have to hear that
all the time.
Speaker 2 (03:58):
Yes, all the time, 24 , seven.
I mean, he did not ever stop.
It was quite strange.
And then when he was two, hewasn't hitting any extra
milestones, he wasn't talking,he wasn't mimicking, he wasn't
making eye contact.
And so we had gone to thepediatrician and he said well,
(04:19):
you know, it's still a littleearly.
We were in a very small town,there wasn't a lot of
specialists in the area.
So he said let's wait a littlebit longer.
And at two and a half we hadhis hearing checked and they had
told us that he was 30 percentdeath in both ears.
And so we were like well, thatexplains the humming, that
explains the not talking, thatexplains the, you know, not
(04:41):
communicating with us andignoring us.
So we got him into some grouptherapies for small children to
socialize him, and we were doingspeech therapy and it was the
group teacher that said I thinkthere's something else wrong
with him.
I said can I recommend you tohave him tested for autism?
(05:02):
And yeah, so there was.
We lived in Idaho at the time.
There was one doctor whodiagnosed autism in the whole
state of Idaho Exactly.
Speaker 1 (05:15):
It wasn't that long ago.
Speaker 2 (05:18):
Well, we're looking at 17 years and you got to
remember the population of Idahois like two million, oh, and if
you cut that population down by, you know kids and adults.
And so, yeah, there was onedoctor.
I don't know how many there arenow, but when he was diagnosed
(05:39):
there was one doctor in thewhole state that could diagnose
him autistic.
Maybe coming here because youhear about parents talk about
how the school diagnosis theirkids with autism and I'm like
school can't diagnose kids withautism, it has to be a doctor.
Speaker 1 (05:54):
Yeah, schools can't do that and teachers are
forbidden from even hinting thattheir child in their classroom
might have autism.
They have to kind of suggestthat, hey, we're seeing some
things, maybe you want to checkthis out, even though they
usually know in their gut thatthat's what's going on.
But, yeah, not allowed to saythat.
Speaker 2 (06:12):
Yeah, so that's a whole new world for us, moving
here to Texas, and we've beenhere in Texas now for eight
years.
We moved when Chasetransitioned out of elementary
school at fifth grade and westarted sixth grade here.
So Okay.
Speaker 1 (06:30):
So that leads me to my next question.
Tell well, wait, I want to backup for a second.
So the humming, how did thateventually stop?
He just stopped at age two,really, he just stopped.
Yeah, hallelujah.
So you think it was theintervention of the speech
therapy, or that didn't cometill later?
Speaker 2 (06:48):
Well, we started speech therapy at about 2 and 1
half, so it wasn't therapy thatstopped it.
I have no idea.
I mean it's just common ownsthat just can't or ever will be
explained.
Speaker 1 (07:02):
But thankfully it stopped.
Speaker 2 (07:04):
yes, yes, because that was the most difficult part
of him being a baby was thehumming.
Speaker 1 (07:11):
Oh yeah, I can't even imagine Well, so tell us a
little bit more about Chase, whohe is, what he's like now that
he's older he loves to draw.
Speaker 2 (07:23):
He is super awesome at drawing.
He's been drawing since he waslittle.
He loves to do all kinds ofsports.
He's super, super athletic.
That was one of the greatbenefits of us moving from Idaho
here, because Idaho does nothave special Olympics, they do
not have special teams, they donot have special groups Really
(07:45):
Nothing for kids with specialneeds, especially in school age.
So, and once they become anadult, it's either you go to a
group home or you stay home.
There are no day habs.
There are no day cares.
Day cares usually won't takechildren with special needs.
(08:06):
Yeah, it's very, very limitedin the area we were at.
Speaker 1 (08:11):
Well, so then, when you had him diagnosed and he got
the label of autism around two,two and a half, what was your
reaction to that?
And then I mean, if there arenot any services available, what
did they do to support you?
Speaker 2 (08:26):
There was no state support.
I had school support.
So he obviously went to speechtherapy and occupational therapy
.
They did that was covered byMedicaid.
Actually, until he was eight wejust had personal insurance and
paid for everything ourselvesbecause we made too much money
(08:47):
to qualify for Medicaid.
So it wasn't until he was eightthat the school pretty much
pushed me to get him on SocialSecurity and pushed me to get
him on Medicaid.
So they bill for him.
Speaker 1 (09:01):
Right, right, because if those of you, parents that
have a child with a disabilitythat's in a public school system
, you don't, if you're not aware, your school district is
getting money from Medicaidbecause your child has a
Medicaid waiver.
And that's one of the firstquestions they'll usually ask
you in an art meeting Do youhave a Medicaid waiver?
And that's why they want toknow, because that's more money
in their pocket, which myinterpretation of that is.
(09:24):
Then I can request and reallyadvocate for more services
because they're getting moremoney from my kid.
Well, not anymore, he's out ofschool, but you know what I mean
.
When he was in school, well,what was your reaction to the
diagnosis of autism?
Speaker 2 (09:41):
It made a lot of sense once I learned what autism
was.
I had to do a lot of researchbecause, like I said, he didn't
seem like a rainman to me, andhe still doesn't, and back then
autism was one in 10,000.
Now, if you can believe it, Ibelieve it's one in 35.
Speaker 1 (10:01):
I don't know what the latest statistics are, but I
know it's gotten more prevalent.
Speaker 2 (10:06):
Be five now, which is just insane to me to think
about.
Yeah, but it was.
It was born in 10,000 when hewas diagnosed, and so there
definitely was this awakening ofit, but it was still so rare at
that time, especially we lived.
We were very fortunate.
We lived in a very, very smallcommunity.
(10:27):
Chase's preschool had him, alittle girl with a copular and
four other students with delayedabilities.
They just needed more of ajumpstart from low income
families and families that hadmoved from Mexico because we
were in a big farming communityso they need help learning
(10:50):
English and stuff like that.
And so that's where he went topreschool and then he always had
a one on one paraprofessionalwith him.
He went to Gen Ed everything upthrough fifth grade.
He went to a Gen Ed.
Kindergarten.
He went to a Gen Ed first,second, third, fourth, fifth,
and that went well.
Well, most of the time, until wewould get.
(11:16):
Once in a while we'd get like anew teacher.
And I remember second gradeteacher.
She was new to teaching and shewas such a gun hoe, free
spirited, she wanted to touchall the children and it was just
like no, he has aparaprofessional for a reason.
Please don't mess with him.
Yeah yeah, she's known him forfive years.
Like don't rock the boat.
Speaker 1 (11:38):
Right, right.
Oh, I'm sure she learned prettyquickly.
Speaker 2 (11:42):
Yes, yes, she did.
After Chase blew up on hertwice, she was like OK, we're
just going to let theparaprofessional handle him, and
I've always tracked hisbehaviors.
Consistency has been hisbiggest thing for controlling
behaviors.
If you don't have consistency,then they don't know what to
expect.
Speaker 1 (12:03):
Right.
So is there some level ofcomfort in knowing what the
boundaries are?
Speaker 2 (12:07):
Yes, yeah.
So teachers always had dailyjournals with me on how his day
went, and if he had a bad day hedidn't get rewarded.
In the evening he didn't gethis preferred activities.
Speaker 1 (12:18):
And did that work.
Was that successful for helpingto shape his behavior?
Speaker 2 (12:22):
Oh, yes, always yeah, oh yes, and even to the point
where in high school it became aproblem because he would know
he messed up, so then hewouldn't let the teachers write
in his book, and so that wouldbe.
Another blowout was no, I'm notgiving you my book because
(12:43):
you're going to tell my mom Iwas bad.
I already know I was bad andshe doesn't need to know.
Speaker 1 (12:49):
Let's keep this between you and me.
Well before we get into some ofthe behaviors, let's talk about
your greatest joy in parentingGrace.
Speaker 2 (13:01):
Oh, he's awesome.
He is so funny.
He can crack people up, heloves to tell jokes, he loves to
goof off, he loves to act outscenes, he loves talking about
birds.
He gets these passions abouthim and he goes gun-ho.
He once was Charlie Brown foran entire year, and he only wore
(13:25):
the yellow shirt with thestripe.
He wore Charlie Brown shoes.
He would only wear shorts orpants, to the point where he
actually plucked out all hiseyebrows and eyelashes.
Wow, and he made everybody callhim Charlie Brown for almost a
year.
That's so funny.
Yeah, when I met my currenthusband, chase was Charlie Brown
(13:47):
.
And one day Chase just walksinto the room it was actually
over Christmas break Walked intothe room.
I said morning, charlie Brown.
He goes.
Oh, no more Charlie Brown, justthe Chase.
And he's never been CharlieBrown again.
Speaker 1 (14:04):
Wow, that's so fascinating.
Yeah, yeah, but he dove into it, you know, with all of his
passion.
That's amazing.
Speaker 2 (14:12):
All of his clothes were Charlie Brown clothes.
He never wore anything else.
We had six Charlie Brown shirts.
We had four pairs of blueshorts and, yeah, it was only
Charlie Brown.
And he still loves peanuts, theyou know the movie and things
like that.
But he's Charlie Brown anymore,just the Chase.
But the bad thing is is, sincethat happened, you can only call
(14:36):
him Chase.
He doesn't like any other petnames.
Speaker 1 (14:39):
Yeah.
Speaker 2 (14:40):
Interesting.
Speaker 1 (14:41):
Yeah, and how nice that people went along with that
.
Right, I mean I'm assumingschool and the teachers and
everything, or did they?
Speaker 2 (14:48):
Teachers did not.
They thought it wasinappropriate, they thought it
wasn't age appropriate to call ajunior high kid Charlie Brown.
I think that they kind ofdetoured him in some ways of him
outgrowing it sooner than whathe would have.
Speaker 1 (15:04):
Yeah.
Speaker 2 (15:05):
Yeah, they got on board with.
A lot of his behaviors injunior high were because they
were calling him Chaston onCharlie Brown.
Speaker 1 (15:13):
Because in his, in his mind, he was Charlie Brown.
Yeah, and they weren'taccepting that.
Speaker 2 (15:18):
I mean, it wasn't like he had on a mask, it wasn't
like he was, you know, actingout in school.
He just that was just his name.
That's what he just wanted tobe called.
Speaker 1 (15:31):
Right.
Speaker 2 (15:33):
So it was the age appropriate thing that schools
try to push around.
Here is very difficult becauseyou go age appropriate.
Well, which age are you talkingabout?
Are you talking physical age ormental age?
Right, and because there's abig difference in a lot of our
kiddos with their physical ageand mental age.
And yes, aspects, they do needto have certain guidelines for
(15:56):
their physical age, especiallylike in puberty and in high
school, and you know things likeshaving and you know the
different situations that comeup with puberty.
But, on the other hand, why dowe have to stop letting them
watch cartoons?
Speaker 1 (16:12):
Exactly.
Speaker 2 (16:13):
Why can't they still watch preschool shows, if
preschool shows is what makesthem happy and they love it?
Speaker 1 (16:19):
You know, I've been reading a lot of books lately
about individuals on the autismspectrum who are non-speakers
and now have learned tocommunicate through spelling, to
communicate.
And these guys are brilliant.
I mean, they know things wellbeyond what anybody ever
expected them to fullycomprehend.
They're totally in there.
They just because of a proxy,they're not able.
There's a body brain disconnectand they're not able to express
(16:41):
themselves.
Some of them are like,incredibly intelligent.
A lot of them are incrediblyintelligent and they're able to
write books with a keyboard,typing, you know, the entire
book themselves or with somesupport.
They still love watching Elmo.
They still love Sesame Street.
They still carry little stuff,the animals around.
So you're right.
I mean there's two separatesides to them, but it doesn't
(17:04):
mean that you have to justaccept one and reject the other.
That's who they are.
You have to embrace that, youknow.
Yeah.
Speaker 2 (17:11):
So it was very sad the way that some of the public
school you know took the wholeage appropriate thing, which is
a big part of why I decided tohomeschool his last several
years and why he doesn't attendan 18 plus program, transition
program.
Speaker 1 (17:27):
So which is interesting because was yours 18
plus.
Speaker 2 (17:31):
Yeah, the class I taught was 18 plus.
Speaker 1 (17:34):
I thought so, and you guys, you did an amazing job in
that class, but yeah, youwouldn't be in there being his
teacher.
So, yeah, yeah.
Speaker 2 (17:42):
It really makes it really easy to guide him through
life, though, because I've I'veactually taught all levels,
from preschool all the way up to18 plus.
Throughout my career I had beenin every level of education.
Speaker 1 (17:59):
Okay, wow.
So yeah, you're the best onefor the job.
Speaker 2 (18:02):
Yeah, I have with all ages.
Speaker 1 (18:07):
Yeah, that's fantastic.
Tell us about a time and I'msure it's not just a time, but
sometimes that have been reallydifficult.
Puberty, oh my goodness, with acapital P.
Yes, yes, tell us about that.
All titles, yeah, what was sodifficult about puberty, heather
(18:28):
?
Speaker 2 (18:29):
So he had a very small, very brief aggression
behavior.
When he was in first grade wedid heavy intensity on ABA
therapy and he outgrew it likevery rapidly.
It was like, okay, now this iswhat I'm expected to do, this is
what I get.
That's where the consistencyplayed in and that's where, like
(18:50):
, the daily log started and itworked very well where puberty
hit and hormones started ragingand testosterone level spiked
and we've been stuck in thisrage.
Speaker 1 (19:04):
Wait, let me ask you because puberty is different
nowadays than it was when andI'm much older than you but then
when I was growing up Now itseems like it happened so much
sooner and I feel like for myson I wasn't ready for puberty
with him and it was like prettyyoung.
Do you remember for Chase aboutwhat age that was?
Speaker 2 (19:21):
12 and a half.
Speaker 1 (19:23):
Yeah.
Speaker 2 (19:23):
Yep, I remember exactly.
It was 12 and a half.
I don't remember the exactmonth.
I stopped counting months onhim way longer.
And you know, you just startseeing the signs.
You know the hair in thearmpits, the darkening little
mustache, and you're like, oh,how cute.
And he starts getting the legair and you're like, oh, you're
(19:43):
becoming a little man.
And then all of a sudden he'slike screaming at you and I'm
like, wait a minute, no, wedon't do this.
And it was to the point where bythe time he was 13 and a half
almost 14, he was attacking usphysically four to five times a
day.
So we decided to go heavy onthe medications because we had
(20:08):
tried, when he hit 12 and a half, we had tried to slowly
incorporating a few medications,a few light medications, to see
if that helped him with hismood.
We tried some likeantidepressants and we tried
some mood stabilizers and but wewent very conservative, very
conservative.
And then it was a point where Iwas scared for my daughter's
(20:30):
safety, because she's prettysmall.
So I was really concerned forher safety and so we went heavy
on the medication and at onepoint he was taking 14 different
medications six times a day.
Speaker 1 (20:48):
Whoa.
Speaker 2 (20:50):
Yes, yeah.
Now we have to nine medicationsEight are daily, one is an
emergency and we're still doingfive times a day because we
spread them out throughout theday.
Speaker 1 (21:02):
Right and do you notice a difference being on?
Speaker 2 (21:05):
medication.
Oh, yes, yes, yes.
So we've, ever since he wasprobably in first or second
grade, we've had him on astimulant such as like Adderall,
so to help him during schooltime hours, and that always
worked wonders.
And then puberty hitting.
Now if we miss a medication, wecan tell.
(21:27):
We can tell instantly.
There are three or four thatare particularly more important
than the others.
I think the others just helpboost, because I Don't want a
zombie kid.
I love seeing him play, I loveseeing him active, I love his
personality.
So he's still on relatively lowdoses of a lot of medication.
(21:50):
Compared to how long he's beenon some and compared to his age
and his weight, we still have onlow doses.
So he takes more of certainones.
I really feel like for critical, like we can't live without
them, and the others are justkind of like there to help to
keep the Dose low right.
Speaker 1 (22:09):
I remember when my son was very young, I was the
mom that said oh, we're nevertaking medication like that's
just you.
You did that too.
That's why we're laughing andand I remember thinking like
there's natural ways to, youknow, handle this type of thing.
We don't need medication.
I'm so, so, totally againstthat.
And then life became extremelyhard and I thought you know,
(22:32):
this isn't about me and mystance on medication.
This is about what it must feellike to walk around in his body
and be constantly wired andanxious and Hyper and not able
to control that.
This is something that's gonnahelp him calm and have a better
quality of life.
So if you're on the fence aboutmedication, you might want to
(22:53):
think about it from the thechild's perspective or the young
adults perspective, because Ithink that changes your outlook
a little bit at least it didmine and it's made a world of
difference.
Speaker 2 (23:02):
Yeah, it really does, and if there was some natural
remedy to like help him, I wouldtry it, and we did try it.
When he was about Four or five,jenny McCarthy came out with
her book about her son, evan yes, I read it.
And the Dan doctors defeatautism.
(23:23):
Now we were spending about abrand a month Going to Utah
because we were in Idaho andthere was nobody in Idaho.
So we had to go to Utah, saltLake City, to find a Dan doctor
and we were spending aboutthousand dollars a month on all
these supplements.
The doctor visits, the specialdiets he wanted to take away.
(23:47):
You want to take away tomatoes,which is my son's favorite food
.
This kid, this kid would doanything for a tomato.
I mean over sugar, over icecream, over Toys, over anything.
This kid loves tomatoes.
Wow, that's so interesting.
Yeah, they're his ultimatefavorite.
And he wanted to take awaytomatoes and I'm like, how am I
(24:11):
gonna do this to my child?
Right, and spent about four orfive months Doing this crazy
insanity.
And, yes, we saw a tiny bit ofdifference, but we also saw,
like, the things that he wasmissing and for us spending a
thousand dollars a month andthat was More than what we were
(24:31):
paying in rent.
Right, that was more than a bigportion of our budget and we're
like, okay, well we're, we werefeeding him, but now we don't
have enough money to eat.
Yeah we all can't afford hisdiet, you know, because it was
no gluten, no dairy.
(24:51):
Well, no casein, right peopleare like try powdered milk and
I'm like, well, can't dopowdered milk, because powdered
milk has Cason in it and andwhen you're in a rural area, I
mean it's kind of hard to findsubstitutes.
There was no whole food storenear us there was.
There was really nothing.
I mean, we our closest grocerystore was 45 miles away.
(25:15):
Oh, that was a regular grocerystore.
Speaker 1 (25:19):
Wow wow.
Yeah, that you guys were ableto sustain that even for a few
months is pretty incredible.
Speaker 2 (25:25):
Yeah, yeah.
So we decided it, just itwasn't for us.
We were just gonna learn how towork with his autism instead of
trying to defeat it.
But now, of course, all theseyears later, I realized you
can't defeat autism.
He's not sick, there is no cure.
Speaker 1 (25:45):
So, yeah, but we went to a Dan doctor too, which was
really interesting.
Josiah was Four because wemoved here when he was three and
same thing I read the book,found a Dan doctor in Houston,
loved this man, loved him.
He was amazing.
But you know, we had five kidsat home.
I wasn't working.
We had one income he had 14.
(26:06):
I believe it was supplements aday.
Nothing could be canned,packaged, everything had to be
organic, made from scratch.
He wanted us to make organicyogurt with goats milk that I
would have to get from Somebodywho had a goat.
You know I'd get their milk andthen strain it with cheese
cloth.
And so many hurdles to gettingto this Level of where we needed
(26:29):
to be with him.
And I tried, I really tried,but you know, doing that with
one kid and then there's fourothers who are waiting for their
food and it was so, soexpensive and it was
overwhelming for me.
That I mean in hindsight.
I'm kind of grateful thishappened, but it was sad at the
time.
Josiah got a stomach bug, um,probably like a month or two
into this and he ended up in thehospital and he lost 10 pounds
(26:51):
in a week because that was oneof the things he wasn't eating.
It had to be, at the time, youknow, all organic, made from
scratch.
Lots of you know fruits andvegetables, and at the time,
just, I was a very picky eaterand so I had to offer him foods
that he rejected.
And so he, you know, I wastelling the doctor he's not
going to eat this stuff and hesaid wait him out.
Eventually he will.
We have a little guy who's noteating and it's tiny, you know
(27:13):
it's like.
So anyway, he ended up in thehospital, lost 10 pounds.
He came home from the hospitaland we said that's it, we're
done.
It had nothing to do with thedandied, it was all because he
had the stomach bug.
But we said this kid can eatwhatever he wants, and we never
went back to it.
So we didn't defeat autismeither.
We still have it, yeah.
Speaker 2 (27:31):
It's crazy how that worked, isn't it?
Speaker 1 (27:33):
Yeah, yeah, it's still here.
So do you have any helpfulhints or tips you use to keep a
positive attitude when thingsget really hard?
Speaker 2 (27:40):
Because I know you've had some really challenging
times positive tips um,consistency, family support, mom
support mom support is thebiggest thing.
We have just recently joined abunch of different foundations
over the last year and a halfand just getting to sit around
(28:00):
and talk to other moms and dadsDon't let me leave dads out,
sorry.
Dads, you're there too, um, andyou guys are just as important.
But just that, that talk, that.
What did you go through thisweekend?
Oh my, thank goodness somebodyelse went through something.
And knowing that we're alldoing our struggles and we all
(28:23):
have our positives and we allhave our negatives, and Yet the
moms are the biggest thing forme right now.
In consistency, because evenstill today I still do a
behavior system with him, eventhough we haven't been in school
and you know, with coveted itwas just him and I home alone
for a long time.
But if he acts out he does notget rewarded and it might have
(28:46):
another fit later, but it's soworth it because it really
controls the behaviors in thelong run.
Speaker 1 (28:54):
So when you mean behaviors and you're saying
acting out, can you describewhat that, what that is?
Speaker 2 (29:00):
Oh, with Chase it starts as a scream.
He'll start screaming, thenhe'll start hitting things.
Like he'll come in and starthitting my bed and then he'll
start kicking things he loves tokick over the trash can and
then eventually gets point wherehe wants to physically fight
(29:22):
people.
Before I broke my ankle, I wasable to restrain him.
My husband has to restrain himand they'll get into what looks
like UFC fighting matches.
Yeah, and I've trained myhusband as much as I possibly
can and he does amazing to holdhim down without actually
hurting him and making sure heholds him in positions that
(29:46):
can't accidentally hurt him.
I highly do not recommendrestraining your child if you
have not had training.
There are so many, so many, somany pressure points where, if
you just put any pound ofpressure, it could seriously do
damage, and a lot of times youwant to hold their arms down,
but you have to watch out forthe lungs and the chest and the
throat and there's very, veryspecific ways you need to
(30:09):
restrain a child, and so I don'trecommend restraining unless
you've been trained.
It's very, very tricky, very,very tricky.
You can so hurt the kid andthat is definitely not what we
want.
We would rather be hurt asparents ourselves than our child
.
I'm to the point now where Ihave to lock myself either in my
room or my bedroom or mybathroom and he breaks down the
(30:32):
doors.
Both my bedroom and bathroomdoor have huge holes in them
right now because it's like howsoon do we want to replace them?
Speaker 1 (30:43):
They're just going to get new holes.
Yeah, so you lock yourself into protect you.
And the whole bit about therestraint too, is when parents
do restrain.
I love your comment I'm so gladyou brought that up is there is
a proper way, a technique andthere's training available, and
I know there's a website.
I'll find it and put the linkin the show notes about that.
But there is a way to properlydo it and it's not because
(31:05):
you're, it's self-preservation,it's to protect you and also to
protect your child fromthemselves, from self-harm,
because sometimes when they rage, it turns inward on themselves.
I know it has in our casebefore.
So you lock yourself in to keepyourself safe.
Does he eventually wind down,wear down?
(31:26):
How do you know when it's safeto come out?
Speaker 2 (31:29):
He does, he tires himself out.
Usually he'll fall asleep.
If I can get, we have a specialmedicine that is supposed to be
fast acting.
But if I can't physically getto the medication to give it to
him, then he doesn't take it.
Sometimes I can tell him to gotake it.
If I've been like in thebathroom and he's started to
(31:50):
calm down a little bit, but notfully there, I can tell him to
go take the medication, andsometimes he will, sometimes he
won't.
But yeah, I just have to waithim out.
Wow.
Speaker 1 (32:01):
And so he just eventually wears himself out.
Does he have something he cando like punch a pillow?
You know, I'm sure you've heardall those things Anything like
that that you might tell atypically developing child who's
having a difficult time to helpalleviate some of that
frustration and anger?
Well, he does.
That's why.
Speaker 2 (32:18):
I think kind of hitting the bed, because we have
talked about like hitting softthings, start punching beds and
things like that, and that'swhen I usually know it's getting
ready to escalate.
Yeah, I mean having a thirdperson.
A third party is always helpful.
I've called sometimes his dadand I'm like here, talk to your
(32:40):
dad, and dad calm down becausehe's not mad at dad.
You got to find the otherperson's not already upset with
as an outside source Hardsometimes for like single moms
or people that don't have a tonof support.
I'm very fortunate, but dadworks out a lot, so a phone call
(33:01):
sometimes helps.
But yeah, just having thatinterruption of oh wait, there's
somebody else here witnessingwhat's going on, right, and even
just somebody to distract thechild, really throw them out of
their anger sense and back intothe reality of oh wait, what am
I doing?
Do I really want to be doingthis?
Speaker 1 (33:23):
Right.
Speaker 2 (33:24):
Wow.
Speaker 1 (33:25):
And you know, somebody who has grown up with a
sibling that had someaggression told me a while back,
many years ago, that 22 seemsto be the age where they start
to grow out of this type ofthing.
And we're just like 21 now.
So I am hanging all my hopes on.
We only have like less than ayear now, you know he'll be 22.
(33:46):
22, yeah, I really think 22,like suddenly he's going to be a
different guy.
I know I'm fooling myself, butthe point is that they
eventually mature to an age andmaybe it's hormonal or something
where things settle down, andI'm really hoping that's the
case for any of us who havechildren that really have some
issues with, you know, thesekind of behaviors.
(34:07):
I'm really hoping there'ssomething to that.
Chase is 19.
Chase is 19.
Speaker 2 (34:12):
And it's so funny you say 22 because that's what I
have in my head, because forwhatever, okay, boys go 10 years
in puberty.
He started at 12 and a half.
Speaker 1 (34:22):
So there must be something to it.
We'll have to get back on whenhe's 22 and we'll talk about it
then.
So is there a product or aresource you can share that has
impacted your world in apositive way, something that's
really been?
I mean, it sounds to me likethe consequences that you use
for him have been reallyeffective, but is there anything
else?
Speaker 2 (34:39):
ABA therapy is crucial, especially when the
kids are young.
Aba therapy sets the foundationof what is expected and how to
get your child to achieve it.
And parents please sit in onthe therapies.
The ABA therapy is not one houra week, it is 24 hours a day.
That is the biggest thing withspeech therapy, occupational,
(35:04):
any type of therapies that yourchild is doing.
You have to be a part of thatbecause they're not going to
magically start talking by goingto a speech therapist for 30
minutes a week.
You have to reinforce everythingthat they're doing.
So medication I know it's a bigcontroversy, but without
medication I wouldn't be able tohave him in the home.
(35:24):
The resource groups,foundations, having support out.
There is another big, big oneChristina Sullivan Foundation
Amazing.
They have been such a big, bigsupport and help, not just only
in getting Chase active andmeeting new friends, but for me
(35:48):
it's just an incredible journeywith them and so, yeah, yeah,
the Christina SullivanFoundation is in Galveston and
League City and they just havesuch a heart for anybody that
has differing abilities and theydo adaptive and inclusive
sports.
Speaker 1 (36:06):
They have students from UTMB in Galveston that are
OT students who oftentimes arepaired up with individuals with
disabilities to do things liketennis and botchy ball and
volleyball and golf and theyjust did fishing, fishing, yes,
yes, yes.
And I remember hearing aboutthis from some of the other moms
years ago and seeing things onFacebook and thinking, wow, how
(36:30):
nice for these families thatthey have something for their
kid.
Josiah could never do this.
And some of the moms heard mesaying like, yeah, that's just.
We could never.
I mean, and we still strugglewith it.
Don't get me wrong, but theidea is that they are so
welcoming and the moms looked atme and they go it's adaptive,
they will work around Josiah.
If he's having issues, theywill work around it.
(36:51):
And one of the botchy balltournament or one of the botchy
ball days that we went to lastyear there were individuals in
wheelchairs and they havespecial ramps, kind of like for
bowling, that they pull up tothe wheelchair and the
individuals able to put the ballright on the ramp and push it
down.
Like so amazing.
So, yeah, incredible, I lovethat idea.
So find foundation, findsupport groups.
(37:11):
Those things are incredible.
What are your hopes and dreamsfor the future?
Speaker 2 (37:17):
Well, um, you know, after puberty is what we're
really striving for right now tomake sure that this aggression
and anger and stuff is justtestosterone jolts.
Right, that's our biggest hopethat puberty ends and magically
he goes back to this fun, loving, cute little boy.
(37:38):
Well, young man now, right, but, yeah, that's that's, that's
our, our biggest hope right now.
Eventually, way down the road,I would love to see him in like
a guest house out of the homebut so close by, perhaps like a
mother-in-law quarters or anapartment garage or something
like that, where he can beIndependent but yet still very,
(38:02):
very close.
Right, I think, is my nextlong-term goal for him to Do
something like that, or eveneven have like a buddy that he
could have an apartment withclose by, yeah, where both
parents can look in though.
Yeah, that's that's mylong-term goal.
My hope is puberty ends all theaggression.
Speaker 1 (38:31):
What about potential employment opportunities?
Do you see any of that in hisfuture Um?
Speaker 2 (38:37):
Not with way his behavior is now I pretty much 22
post 22.
If he can get his aggression andhis behaviors under control, he
would definitely be employable.
He is so smart, he's so funny,he has so many things that he
(38:59):
can do that he can do well.
I know a lot of autistic peoplelike reputation and so like
they found them, jobs andFactories and assembly lines and
things like that.
Chase typically gets bored withthose types of things.
I think he likes things thatare Similar but not repetitive,
(39:20):
mm-hmm, like he knows what toexpect, but it might be just a
little bit different each timeright.
Speaker 1 (39:26):
So yeah something like that.
Yeah, that sounds great.
So if you were sitting withsomeone who is just about to
walk in your shoes and Live thelife you have lived oh, I see
your hands going up over yourhead.
They're gonna walk the samepath that you've walked.
What encouragement would yougive them?
Don't give up.
Speaker 2 (39:47):
There is light at the end of the tunnel.
There are so many peoplewilling to help.
You just have to ask Mm-hmm.
If you don't ask for help,people are not gonna know you
need help.
Speaker 1 (39:58):
Right.
Speaker 2 (39:58):
Don't isolate yourself, because that really
hinders so many extra problems,and just stay Consistent,
because you're not always gonnabe positive.
There are some days I just Sitand cry in the shower for an
hour.
There are days where I want topull out on my hair, and that's
(40:20):
okay.
It's okay to not be okay, and Iknow that's a big cliche now,
but just remember to keep movingforward and Consistency I
preach to everybody is justconsistency.
Speaker 1 (40:33):
Yeah, that's so important.
They need to know boundariesand they need to know that
you're gonna hold the line tothose boundaries and not Hold it
for three times but the fourthtime just get tired and let them
go, because then what have theylearned?
Speaker 2 (40:45):
You know they learned oh, mom's gonna let go four or
five, and then the next timethey're like oh Well, she let go
.
So oh, wait it out till six.
Oh, mom, let go at six.
Guess what next time?
They're gonna go till 10, theyknow eventually going to.
Speaker 1 (40:58):
Yeah, exactly, consistency is key.
That's awesome.
Well, I know it's not been aneasy road for you and I
appreciate you sharing thatbecause I think Especially a lot
of the parents that have beenon the podcast they don't or at
least so far they have not hadthe life experiences with their
children that you and I have had, and so I think there's more
people out there that areWalking this path and I think
(41:20):
it's encouraging them for themto hear.
There are times when it isreally really hard, but you do
get through it.
You don't think so in themoment, yes, and you take long
car rides sometimes and sob thewhole time and you think, oh, my
gosh, this is horrendous, howam I ever gonna survive this?
But you do, miraculously, bythe grace of God, you do, and
then you're able to sit onthings like this and tell other
people you can do it too.
(41:41):
22 is around the bend 22,that's number.
When they turn 22.
If it doesn't happen, I'm goingto be a little disappointed,
but no, I think it's gonna work.
Thank you so much for being on.
I really appreciate yourinsight and your willingness to
share everything that you'veexperienced it's been.
(42:02):
I think it's gonna be verybeneficial for other parents.
Speaker 2 (42:05):
Absolutely Thanks for having me.
Speaker 1 (42:07):
Thanks for listening to the embrace the blessing
podcast.
Visit embrace the blessing calmslash podcast for show notes
and links to any resourcesmentioned.
If this has been beneficial toyou, please share it with a
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
just like you.
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