Autism Awareness from a Mom's POV | Tracy Byrd Shares Her Parenting Journey - Generational Tea

Episode Transcript
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(00:11):
There were no crimes, really.
Not that I recall.
No cry.
No, I do not recall, your honor.
Awesome.
Well welcome everybody to theGenerational Tea Podcast.
I'm Cana.
And I'm Ronnie.
And today we have a specialguest, Tracy Bird, is Rhonda's
old friend, partner in crime.

(00:32):
So we're so happy to have you onthis podcast and cover this
topic with you.
Well, thank you for having me.
It's yes, of course.
Absolutely.
So, do you wanna tell us alittle bit about your
background, your family dynamic,and a little bit about Noah as
we bridge into why we'reinterviewing you?
Sure.
I don't know how far back wewant to go.

(00:54):
So I was thinking maybe thistime we could maybe talk a
little bit about like theinitial diagnosis.
Okay.
What resources were available,how you guys were able to cope
with that.
And then I'd love to bring youon another time where we can
talk about more, what are theresources available for parents
who have an adult child withautism?

(01:17):
How do you feel about that?
Okay.
Yeah, that's perfect.
Because I feel like it's way toomuch to cover in an hour.
Yeah.
Yeah, it is.
So if we don't get to all of ittoday, we can definitely do a
follow up episode if that'ssomething you'd be interested in
doing with this.
Yeah, we'll definitely do that.
well, let's see.
Noah was diagnosed when he wasthree and a half, and this was

(01:39):
23 years ago.
So at that time, autismawareness was not.
prevalent.
The company that is now autismawareness, that foundation had
not even been set up yet.
And I really think that becauseof that foundation there is so
much more awareness to it.

(01:59):
So all we really knew aboutautism when he was young was
Rain Man.
And I will say that ignorance isbliss because when he was
diagnosed with severe autism,that was my thought.
So I was like, well, you know,if he can order a pizza by
memory and the phone number bymemory, then I can handle that

(02:20):
life, you know?
But we didn't really know whatautism was.
And when he was first diagnosed,we thought that maybe he could
be deaf because he didn'trespond to, us as we said his
name.
He wasn't trying to form words.
And my oldest son.

(02:40):
Is 20 months older than thanNoah.
So we saw that Daniel developwas developing much differently
than Noah had been.
So we talked to the doctor aboutit.
we had a private sitter at thetime and she is the one that
mentioned autism again, didn'tknow anything about it.
And so when we mentioned that toour pediatrician, he said, well,

(03:02):
he can't be autistic becausehe's too loving.
You know, just, he hugs on you,he's too much.
He physically wants to be nextto you.
So he cannot be autistic, butwe'll send him to a speech
therapist, is basically whathappened.
And we did what was called anauditory brain response, which,
was the probes on the headbecause he couldn't do a, a test

(03:25):
to see if he was deaf byspeaking it.
And so that showed that he hadperfect hearing.
So we went to a speech therapistwho happened to be, perversed.
And autism.
So then we, at that point theymade us sit down with a panel.
And that panel had three orfour, different doctors on that

(03:48):
panel.
one being a speech therapist andoccupational therapist, a
developmental peds, and then apsychiatrist.
And after that three hour teston a three and a half year old,
um, they told us that he wasseverely autistic and moderately
retarded.
And they used the wordmoderately retarded.

(04:08):
And so then my question was,well, what is that?
You know, what are you saying tome?
What is that?
And they told us, she sat thereand she said that he would never
speak.
He would probably never formrelationships with us.
We wouldn't have like son,mother relationships.
He wouldn't form a relationshipwith his brother.

(04:30):
He didn't know how to.
he wouldn't show love, empathy,sympathy, any of that.
And probably by the time he wasa teenager that he would be in
an institution because wewouldn't be able to physically,
control him.
And the funny thing about it,when I look back on it, we were
young and didn't know a lot andthere was no internet.

(04:53):
You know, it was just, here's abunch of paperwork.
Read that when you have aminute.
And, I think what really hit memore so than the autism was the
retardation because, you know, Imean, I knew what retardation
was.
I understood that word uhhuh.
And so that I almost focusedmore on that than I did the

(05:15):
autism.
Not even realizing, you know,what they were saying to me at
that point.
'cause I hadn't really seen whatwould come next, if that makes
sense.
So, yeah, but that's, that'sthe, I can't imagine like not
having Google.
Well, especially since I'm froma younger generation, I grew up

(05:35):
like having technology around meand whenever I'm confused or
like get something at thedoctor's office, I don't
understand what it is oranything like that.
I just immediately go and likefind all the answers to get
myself a peace of mind.
So I'm sure that was probably ascary moment, hearing that and
wondering what all this means.
and the thing about it was whenwe were growing up, retardation

(05:58):
or learning disability, um,folks were like five or six
people in our entire highschool.
Mm-hmm.
I feel like, you know, it was,it was very rare.
Mm-hmm.
So, and it was also verydisconnected.
They had their own bus, they hadtheir own schedules, their own,
teachers and such.

(06:19):
So there was not a lot ofmainstreaming that was
happening.
There was not the interaction, Idon't feel like was there.
Would you say that's true?
I agree.
And there's a lot of stigmabehind, you know, it was just,
um, I think that was what was soheartbreaking.
'cause when we grew up, youknow, it was mm-hmm.

(06:41):
That's, I hate to say it becauseonce you get into the special
needs community, you're veryprotective of mm-hmm.
Of the community.
And that word is so derogatory,but growing up in our
generation, it was just a wordthat you threw around with your
friends and you would call yourfriends that they would, the

(07:03):
comment of, you know.
you must have rode the short busto school, all of that.
So that comes flooding into yourmind when you get this
diagnosis.
Now, the terms aren't as harshas they were 23 years ago when,
when Noah was diagnosed.
Now it's, intellectualdisabilities, which I like that

(07:24):
term much better.
And Noah definitely hasintellectual disabilities.
He's probably more like an8-year-old in his mind, maybe
eight, nine years old.
in some aspects.
And then in some aspects he'slike a teenage boy.
So, you know, it's a, it's a, aworld that you have to learn as

(07:48):
you go and it's a everydaylearning experience.
I'm still in it because now he'sgonna be 26 in a month, and now
I'm.
Learning new things, you know,versus what the youth in his
youth.
So the, it's a journey.
It's definitely a journey.
I'm curious, I know you talked alittle bit about when you first

(08:09):
got the diagnosis.
What was it like, not just onthat day, that moment, but in
the weeks following up afterthat, what was that like for
you?
well the first couple of days itwas kind of shocking.
And again, I think having theinternet is almost like a
double-edged sword because Ifeel like if I would've had the

(08:31):
internet then and been able to,because I am a researcher by
nature, mm-hmm.
I would've gone home andresearched everything I could
find and it probably would'veput me in a tailspin to learn
what could be.
So I think.
It may have been a little biteasier as far as not having all

(08:53):
that information flood my mindat one time.
Yeah.
So I do kind of feel forindividuals who get that
diagnosis these days becausethat's what they're doing.
They're going home andimmediately, just like you were
talking about, researchingwhat's to come.
Mm-hmm.
Because we always want to knowthe future.
We wanna know what's to come.
You know, we, we hate surprisesby nature.

(09:14):
We hate that kind of surprise,you know?
so the first couple of days Iwas just trying to wrap my mind
around what they had given me.
And the pamphlets were verygeneral, you know, it's almost
like they didn't know what Ishould expect, but then I got
focused on the nevers.
The never We'll talk, never,you'll never hear him say, I

(09:36):
love you, you'll never, see thissibling relationship.
And then you start.
you start mourning what they'renot going to be.
Right?
Yeah.
So I started mourning like, thefirst date, the first car, the
first time he and Daniel jumpedin a car together and went with
their friends to the movies.
'cause you're romanticize allthat stuff you expect your

(09:58):
children to be and to do.
And even though typicalchildren, we romanticize that
too.
And, and things turn outdifferently sometimes it's
still, you know, the nevers wereso definitive, he will never do
this and there's nothing you cando to where he will do this.
So I would say I was in mourningI was in, not because he wasn't

(10:22):
with me, but because of what hewouldn't be.
And so that was a lot of, thatwas a lot of crying.
Yeah.
A lot of, um.
Not understanding spectrum ofemotions.
That's just a lot to process, alot to handle.
I can't imagine going throughthat and trying to process and

(10:44):
think through all that stuffmust've been incredibly hard.
It was.
And I was, you know, 28 yearsold with two children, right.
20 months apart.
One was three, one was five.
And to think what was our lifegonna be like?
What was, what were we gonna do,you know?
Mm-hmm.
Mm-hmm.

(11:05):
And, um, I had just reallygotten into a relationship with
God at that point, right beforewe found this out.
Probably a year, maybe two yearsbefore.
always been in church, but neverhad a relationship, didn't
understand what that was allabout.
And then I was at that placewhere I was understanding and,

(11:25):
and reading and studying andwanting to be that, that
proverbs, you know, um.
31 women times, is it?
Yeah.
Okay.
Problem.
Right.
So something, you know, I was,yeah, right.
I was working on that and I feltreally close spiritually at that

(11:45):
point.
And man, it just all camecrashing down.
It just like, how could this behappening?
And then I had external thingshappening at the same time.
My mother was diagnosed asbipolar and there was a lot of
things going on there.
My grandmother had just died, mystepfather had just died.
So it was just like all thistragedy I felt like at one time

(12:08):
and dealing with all of it atonce.
it was a di, very difficult,very difficult time.
Yeah.
Well I can already tell you'rean incredibly resilient woman,
so yes.
She props to you.
Yes, yes.
Thank you.
so in looking back towards,maybe right prior to, or maybe

(12:29):
just when you got, you and Eringot married, and by the way,
Tracy's husband's name's Erin.
And, when you and Erin gotmarried, I assume that, after
this diagnosis it really changedHow did it shape your future
personally and, you know,professionally at that time once
you got this diagnosis?

(12:52):
Well, I wouldn't say right whenwe got it that it shaped much.
we had a private sitter.
In the beginning, uh, soprobably three to four.
And then she decided, and it maybe because of Noah, that she did
not want to keep childrenlonger.
And so we had to go to a daycaresituation and Noah was probably

(13:16):
there six months, maybe beforewe were expelled from that
program.
due to him being a human piranhaand abiding every child and
every worker and climbing wallsand not laying down for naps.
And so once we were expelled, wekind of looked at one another

(13:37):
and we said, you know, and Ienjoy working.
I, I get joy from workingoutside the home and mm-hmm.
I knew when I had children thatI was probably not gonna be a
stay at home mom because I kindof thrive in that world of, of
work.
Mm-hmm.
the one thing I will say is Iwasn't working my dream job, I'm

(13:58):
working my dream job now, butwasn't then.
And so that was a little biteasier to, to be able to go
part-time.
So what we did as a family, uh,we decided we wanted to live
very poorly.
You know, let's check that out.
And, I worked part-time andAaron worked part-time and we

(14:18):
switched off.
He worked part-time for UPS atnight and I worked part-time
during the day, so he would bewith Noah during the day, and I
would do all the night, uh,chores.
And our marriage became more ofa partnership and it had to be,
because I kinda liken it toBatman and Robin, like they're

(14:39):
together as partners, butthey're there to protect one
another and they're alwayshaving to help one another to
get through whatever that.
You know, is happening at thatmoment.
And then once all that's over,they're tired.
And so, yeah, they're stillpartners, but they're like,
alright, we're gonna go into ourseparate caves and, you know,
just kind of be until the nextfight comes up and then we'll go

(15:01):
together and, and do it again.
So it's kind of it, it turned inand I thank God that Erin and I
were such good friends becausehad we not been the best of
friends, it wouldn't haveworked.
And I think a lot of marriagesbreak up over special needs
children and it's simply becausethe exhaustion and the, fear of

(15:26):
the future and just, it's just alot and you take it out on that
person that's right next to you.
So, but we made it through allof that.
awesome.
He's.
Way, uh, more laid back than Iam.
So he was able, able to take thecrazy and I was like, yeah,
yeah, we'll do this together.

(15:48):
You absorb the crazy and I'll bethe crazy.
That's kind of how it was.
That's match made in heaven.
Yes.
But now, you know, we're great.
we're together and we'restronger than we've ever been
and I feel like you know whatwe've gotten through, we can get

(16:08):
through anything really.
Yeah.
Yeah.
Perfect.
That foundation of friendshipfor sure is definitely a strong
indicator of relationshipsuccess and mutual respect.
And mutual sacrifice.
Yes.
You guys came together anddecided no one person doesn't
get to pursue their dreams whilethe other one, right.

(16:29):
Not that it was anything lessthan, but it was definitely
different than what you haddreamed of.
You guys came together and founda mutual, ground and that's,
that's very admirable for sure.
Yeah.
So I know you texted me beforethe session said you were
grading papers.
So you a teacher now?
Mm-hmm.
I, I am a history professor atTri-County.

(16:51):
Oh, okay.
So very nice.
That's awesome.
My dream job.
I love it.
It's awesome.
Well, I'm glad you finally gotto have that dream job.
Thank you.
You earned it.
It is not a money maker.
That is for sure.
But, um, yeah.
It's something you're passionateabout.
Yes, I'm very passionate aboutit.
So I do get to teach Americanhistory and that's my, that is

(17:14):
my jam.
But, you know, I, now I'mteaching online.
I've been doing it for abouteight years now.
I went back.
I have an associate's degree andthen I worked in accounting for
years and years.
When I, quit full-time work,that's what I was doing.
And so I did on the sidepart-time and stuff, but I went
back when the boys were inschool, when they were in middle

(17:37):
school to get my bachelor's inhistory.
And then I got my master's inhistory and started teaching
probably when Noah was 17 maybe.
And still in school.
'cause he was able to go toschool, till was 21.
And so I taught okay.
while he was in school.

(17:58):
And then now I teach onlinebecause he has to be, I don't
really have any, a way forsomebody to take care of him or
I don't have a place for him tobe.
Sorry, tri County, I'm about totell some news here, but I tried
to get him to be able to come toclass, but due to the law or
whatever, they won't allow himto come into my classroom.

(18:20):
So teaching online has been, youknow, it really has been a
godsend.
I don't really get therelationship I want with my
students, but it's still, it'ssomething for me to do and I
enjoy it.
Yeah.
Yeah.
That's great.
That's awesome.
So I'm sure there was probablytimes when you experienced

(18:45):
self-doubt and feelings of beingoverwhelmed.
Is that fair to say?
Yeah.
Oh yeah.
So how did you navigate thosemoments?
Well, Hormones always play a bigpart of that.
And as funny as it sounds, Imean hormones and sleep
deprivation will really, uh,from the time Noah was probably

(19:08):
four till he was, I'm gonna say14, he slept maybe two hours a
night and then he would be upfor two hours and maybe sleep an
hour.
and he wouldn't stay in his bed.
And so we had to get up becausehe ma would try to go out the
front door and go get on histrampoline, or he may, you know,

(19:32):
wreak havoc in the house.
And we had to make sure hewasn't disturbing Daniel.
And so one of us was always upwith him.
And I think those are whenyou're in your darkest moments,
because you are.
So sleepy and so tired, and thethoughts are flooding.

(19:54):
And so a lot of my self doubtcame then, you know, why is he
not sleeping?
Why I've done everything they'vesaid to do, but I'm not doing it
right.
What is it I'm not doing right.
You know, that kind of thing.
And, and it really, I startedfocusing more on me than I did
on him I feel like I'm veryindependent in things and that I

(20:15):
want to fix everything.
I'm a fixer and I couldn't fixthis.
And it got to a point wheresomething had to give because I
was going to literally lose mymind if I didn't, you know, give
this up and say I can't.
Do this.
So I, I remember one night, itwas about two or three in the

(20:38):
morning, Noah liked to picksheet rock.
So if there was just even thetiniest hole in his sheet rock,
he would pick huge holes intothe wall.
So we were excellent, atrepairing sheet rock.
If anybody ever needs it, weknow how to do it.
One way of one that was yes,before the internet, we can, we

(21:01):
can do it, make a YouTube video.
so I was sitting up against thewall.
It was like two in the morningand I would, I started playing,
casting crowns, praise you inthe storm.
And I kind of would hit my headup against the wall and he would
be over there singing or pickingthat sheet rock or whatever.
And I just finally said, youknow, I can't do this anymore.
God, I, I, this is completelyyours.

(21:22):
I am.
I cannot do this physically.
I'm done.
I'm about to lose my mind.
I'm about to just.
Get on a plane, go to Jamaicaand never be found.
I can't do this.
Mm-hmm.
And you know, I just prayed andprayed and listened to that song
I know 15 times back and forth.
And I felt like when I woke upthe next morning, just this

(21:44):
whole, weight had been liftedoff of me.
And I felt that peace becauseinstead of my prayer being,
please take this out away fromhim, please get rid of autism
altogether and just let him betypical.
I changed my prayer to help mefind peace in all of this and

(22:05):
just, you know, move me forwardand make me the person I need to
be so that Noah can become theperson you made him to be.
And I won't say that every dayhas been great since then, but
the peace I have felt since thenhas been, you know, just.

(22:25):
So much better than what it wasprior to that.
And I think we have to get tothat place where we allow people
to help and allow, you know,just that piece to come into our
lives.
However, we see that coming inand I stopped trying to fix and
I stopped trying to be perfectat everything and just said, I

(22:48):
am who I am and I can only do somuch.
So that's where we ended.
Wow.
That's definitely powerful.
Well, if I start crying isy'all's fault.
It's the question.
Yeah, I feel cry happening.
Well, we might, because the nextquestion here, I'll let you.

(23:09):
Oh, Lord.
Are y'all trying to make me cry?
Are y'all like Barbara Walters?
We're gonna try to make this.
No, we are not.
What has been one of the mostjoyful and remo or rewarding
moments you've experienced as amother of a autistic child?
Mm.
You know, I was reading thatquestion and I was thinking
about it.

(23:31):
you know, what I think is soamazing is that our, and I, I
don't wanna call'em our typicalchildren or, you know what I
mean by that?
Um, I think they call itnon-diverse, uh, anyway, I'm not
sure what the term is.
There's some fancy term fortypical children, but really,
you know, they, they hit all ofthese milestones.

(23:52):
You know, they walk by this age,they start talking at this age,
they start talking in sentences.
At this age, you know, there'severy little milestone that,
that children typically hit withNoah.
Those milestones may never behit.
You know, hit, but theydefinitely aren't gonna be hit
at the same time as a typicalchild.
And so, you know, he didn't sayhis first real, what we call on

(24:16):
purpose words until he wasprobably seven years old.
And that was just, you know, wejumped for joy'cause we waited
so long to hear that word comeout of his mouth.
And what we meant by on purpose,that's what we called it, that
was our family term for it, washe just said a word for either
something he wanted or, youknow, an appropriate way to say

(24:40):
the word.
And I can explain that more in aminute.
But, um, so the first time hesaid, mommy, he was 10.
And so, you know, you expectthat with your children as
they're grown, but we get allthese little fun, exciting, new
things.
At least expect it, you know?

(25:01):
So to me that's what the joy Ifind in that.
Just watching these small thingsthat happen in his life that's
just so that we celebrate somuch because we never thought we
would do it.
You know?
And, and they come outta nowhereand we're just like, oh my gosh.
You know?
That's amazing.

(25:22):
And, and just Wow.
Be able to, and we're stillgetting those little, those
little joys I call'em hugs fromheaven.
Exactly.
I mean, and it's, you know, likea little wink, God wink.
He's like, I still see you.
Exactly.
I see you.
I, and it's just fantastic.
I mean, it's just so much fun towatch that.
That's awesome.

(25:42):
Yeah.
That is really awesome.
and too just to watch himinteract with others.
When they told us he would neverunderstand relationships or love
or, or tolerate physical touch,to even have a hug.
The amount of people that havejust fallen in love with Noah.
And never even meet him, butjust see him on, you know,

(26:04):
Instagram or Facebook orwhatever, and they just
instantly fall in love with him.
I'm like, how is he not special?
You know?
How's he not?
And if you get a hug from NoahBird, then his discernment of
spirit is, is amazing.
Wow.
And if he hugs you, then youknow you're a good person.
So, I mean, he's just, I don'tknow.

(26:28):
Well, I was thinking abouthaving Noah on the next time you
were here, but what if hedoesn't hug us?
Cana?
Oh no.
Oh, that says so much about us.
He would definitely hug her.
She looks like a Disneyprincess.
I know.
She should see her with her hairdown.
Yeah, it's a whole thing.
Tracy.
Oh yeah.
He loves the Disney Prince.

(26:49):
Not that you don't look like oneRhonda.
I'm just saying she's, I thoughtyou were talking about her.
I was like, she does, right?
She does look like a Disneyprincess too.
No, it's the blonde hair.
Oh, the blind hair.
Um, so we're gonna move kind ofinto some of the practical

(27:10):
aspects of pairing an autisticchild.
So kind of thinking back to moreof the formative years, maybe
preschool.
elementary school area.
did you have any key strategiesor approaches that you've used
to support his development andwellbeing?
was there any like systemicapproach that you were able to

(27:32):
adopt or did you make up yourown and if you did kudos?
No.
Internet.
No Internet.
Exactly.
Exactly.
one thing I always made it agoal to seek out people who had
older children because I wantedto see what they had done and
what worked and what didn'twork.

(27:54):
The thing with autism is it maywork for your child, but it may
not work at all for the nextchild.
And so my motto became, as longas it was legal and as long as
it.
Would not hurt him physically,and it didn't go against my
faith.
We'd try it.

(28:14):
And there are things that wehave tried that did not work for
Noah, and some people, you know,they swore by it.
But for instance, and I'm notsure what they call'em now, but
back in the day they called'emDan Doctors.
Do you know what I'm talkingabout, Rhonda?
No.
Okay.
No.
Um, they were these doctors thatgave, that did testing to see

(28:36):
what kind of, toxins you mayhave in your blood, the levels
of mercury and all that kind ofstuff.
And then they would give you,like, I'm talking a box full of
supplements and these pills.
Mm-hmm.
They were very large pills andyou're asking me to try to get
these pills down my 7-year-oldautistic child's gullet.

(28:59):
And that was not happening.
I mean, it was just, it wasridiculous.
And the, the amount of.
Money and the amount of pillsthat came along with that was
just so, that was not an optionfor us.
It did not work, but we hadspeech therapy and we had OT
therapy.
Both of those worked very wellfor Noah.
we had a BA therapy into whichwe were just blessed with that

(29:21):
because the first time Noahreceived a BA therapy, which is
applied behavior analysistherapy.
He was, eight years old.
And what happened was SouthCarolina had a pilot program and
they did a lottery with theautistic children in South
Carolina.
I think there was something like9,000 people in this lottery and

(29:43):
the first hundred to be drawnwould get this a BA therapy for
free, which if you know anythingabout a BA therapy, it is very
expensive.
I've always said that autism islike a rich man's game because
the more money you have.
The more help you can get yourchild.
Mm-hmm.

(30:03):
Especially if they're on thehigher end of the spectrum.
'cause you don't get as muchhelp on the higher end as you do
on the lower end.
so we did get a BA therapy.
He was, I think, drawn at number79 in the lottery and we got
that for a few years.
Again, a god thing, uh, that wasincredible.

(30:24):
we did a gluten-free diet fromthe time he was three and a half
to the time he was 15.
And I believe wholeheartedlythat that helped as far as his
behavior was concerned.
And I think that helped becausehe could, Noah was considered
nonverbal.
and if you don't know a lotabout nonverbal versus verbal

(30:46):
autism, when he was diagnosed,he had never spoken a word he
used Sounds.
and he would pull on you or hityou or bite you or whatever to
get what he needed.
so he never formed words.
Today, Noah would be consideredlike, um, non conversational.
So he cannot actually carry on aconversation.

(31:07):
What he uses is what they call eele.
Can we word that so he canrepeat words and he will repeat
words thinking that he's havinga conversation by repeating the
words that you just said.
mm-hmm.
And he also sings because all ofthat comes from a different part
of your brain thanconversational speech, if that

(31:28):
makes sense.
Oh.
So he doesn't, and this is oneof our still our major concerns.
He will not tell me when he isin pain.
He cannot express how he's inpain.
So, you know, I can ask him ifhis stomach hurts, but he's
gonna say yes.
He says yes to everything.
Everything, everything you askhim, um, you can say, do you

(31:48):
wanna go burn down a house?
And he'll say, yes, absolutely,let's do that.
So, you know, yes, I would loveto.
Yes.
Depends on which house.
I mean he never says no.
And it's because he doesn'tunderstand the difference
between yes and no.
And so that's what's verychallenging for us.

(32:11):
But with the gluten-free diet, Ibelieve his behavior was,
difficult because I think hisstomach hurt all the time and he
couldn't tell us that hisstomach hurt.
And with that diet yes, andcalming that gut, I think it
took a lot away, all of that.
Um, so I will say that wasdefinitely the best thing that

(32:34):
we did.
And we'll probably go back to, Ithink it's time that I go back
to that for his help anyway.
Yeah.
Yeah.
Now I can tell you one thingthat we were gonna try, if you
want me to tell you the story,but as long as you're not rushed
on time, we're not.
I know.
One thing that we did, and whatwe thought about is because when

(32:55):
Noah was eight or nine yearsold, there was a woman in
California that her son wasseverely autistic and she used
what she called, I think hisname was Joey, and they were
called Joey Cookies.
And y'all know, I probably knowwhere I'm going with this, so
they were laced with THC and shehad her marijuana cookies and
she would give him for anxietyand that kind of thing, a bite

(33:18):
off those cookies.
Mm-hmm.
And she had'em in these littlethings.
So I thought, well, what if wedo that for Noah?
But of course it was illegal inthe state of South Carolina and
I was.
Very concerned about going tojail.
Number one, are my child gettingtaken by DSS.
And so I was talking to myyounger brother about it and you

(33:40):
know, we grew up in the, youknow, the buckle of the Bible
belt, right?
So I didn't know where to getthis stuff, but my younger
brother, who is so worldly, hewas like, oh, I can get it.
You just bring the gluten-freebrownie mix up here to
Pennsylvania and I'll get thestuff and we'll do it.
And I was like, all right, butnobody can know.

(34:01):
I just wanna see if it works forhim, right?
He was so, brother was all, oh,I know how to do this.
I got this.
He owned a couple of restaurantsand so he knew where to get it
and blah, blah.
So I bring the brownie mix, wemake the brownies.
My brother takes what he gets inthis bag and he chops it up.

(34:21):
Like parsley, like chop thestems and all just chops it up
and throws it into the brownie.
And so yeah.
So we go to taste thesebrownies.
Before I was gonna give one tono, I was like, all right, well
I need to taste it.
And it literally tasted like wewere eating grass and sticks and

(34:41):
little twigs were in this brown.
And I'm like, is this how you dothis?
I mean,'cause this isdisgusting.
There's no way my child's goingto eat this.
And I did not give them to him.
Well, you know, come to find outpeople, put it in butter and get
the oil and all that kind ofstuff and or in water.
And then you make the productthat way.

(35:02):
Not chop it up.
Like we mean it was, it was thefunniest thing you had to be
there.
But, so that did not work for USState from Colorado.
I am where it's been legal, so.
Right.
You know how No, I don't thinkthat can do it.
Exactly.
Yeah.
But worldly brother knew.
If you knew my brother and youcould see him be like, oh yeah,

(35:24):
this is how you do it.
Chopping it.
Like he's, Gordon Ramsey overthere.
He's like, gosh.
And then feeds it to hisfather-in-law who eats like
three of these brownies.
And I'm like, oh, dear Lord,we're all going to jail.
But, and I don't know, oh mygosh, if it has the same effect,
whatever.
so I never gave it to Noah.

(35:45):
I don't know that it would'veworked for him or, or what
would've happened if it had beendone correctly.
But I do now give him CBD oil,which is Charlotte's Web Uhhuh.
That's what we give him drops.
Oh yeah.
Mm-hmm.
And that stuff's amazing.
And he has not been onmedication since I started any
kind of other medication forbehavior like he was on,

(36:08):
Rispadol for a while, for acouple of years, very low dose,
but he was on that.
Um, he's not been on medicationsince we started the CBD drops,
uh, probably four years ago.
So that's been, wow.
Yeah.
That has been a game changer.
I don't know, I'm not saying Iwould never do it if it became

(36:29):
legal in South Carolina where hecould do, the THCI will not give
him any synthetic THC or any ofthat kind of stuff.
The Delta eight, delta ninestuff.
Right.
I, okay.
I don't want him to hallucinateor feel like he's outta control.
That's not what that's for.
And I think that Charlotte's Webtakes the edge off enough that

(36:51):
he doesn't need any of thatother stuff.
Yeah.
So saying if you do it, that'scompletely up to you and I'm not
judging you for it'cause.
If it works, praise the Lord.
But, you know, that's awesome.
I, through working in holisticmedicine, I, went to an autism
one conference years ago and metthe folks at Charlotte Web.

(37:14):
It was just like we, they werejust now, coming up with
something that was regulatedenough that it could be illegal,
which is really sad, but Yeah.
And so, um, I'm very familiarwith that product and, we'll do
our best to try to put just atleast their website in our, in
our notes.
Yeah.
Yeah.
they've been around like one ofthe first ones, so mm-hmm.

(37:35):
They've got a great product forsure.
I learned about them from, froma father actually of an autistic
child.
Really?
Mm-hmm.
Years and years ago.
Awesome.
And we used to order it.
We used to actually drive, nowwe order it mm-hmm.
Off their website, but yeah,it's, and it's been consistent.
Mm-hmm.
Do you feel like it's beenconsistent, like dose by dose?

(37:57):
Yes.
Concentration wise?
Mm-hmm.
Okay.
That's good to know.
It's worked, so, yeah.
I mean, I can't say that otherthings didn't help along with
it, but it's been a greatproduct for him, so That's
awesome.
Well, it's great that you foundsomething that worked.
Yes.
Yeah.

(38:17):
How do you manage balancing yourchild's needs with your own
self-care and personal time?
Do you see my hair just kidding?
Looks amazing.
No, seriously?
Do you have like something thatyou.
Are able to tune into, to kindof recharge or in the past?

(38:40):
What's something that's beenpractical for you?
in the past I've been able to,again, it, this, it's sad, but
you know, being in school anddoing that kind of thing was a
recharge for me.
But unfortunately, and this isprobably not, it's not a

(39:02):
reflection on other people'causepeople have asked to help, but
when you have a nonverbal child,it's very difficult to give that
power to someone else.
and that's mainly because if Ipick him up from someplace and I
say, how was your day?
Or How did you feel comfortablebeing there?

(39:23):
You know, that kind of thing.
He's not gonna tell me.
He, he just looks back at me orjust echoes what I just said to
him.
yeah, and I think that's hardfor people to understand because
they hear him speak, but theydon't understand.
He can't process the speechthat, that answers that
question.
And so I'm very, particular andI'm very overprotective and, and

(39:50):
I'm okay with that.
So there's not a lot of timethat I'm not with him, unless
Aaron is with him.
And that's just kind of ourreality.
Uh, yeah.
But now that he's older, he, youknow, he will go into his room
and do certain whatever activityhe's on at that point.
'cause I very, he does variousactivities and, you know, I'll

(40:14):
read a book or clean the houseor do laundry or whatever.
Um mm-hmm.
Get things done that I have toget done.
so now is better.
When he was younger again we, itwas more of a, I will do my
thing and go out and go shoppingor go maybe with some friends to
dinner or that kind of thing.
And then Aaron would do histhing, which would be hunting or

(40:36):
something that got him in asolitary kind of situation,
Uhhuh.
And so that's kind of how wespend our time Now.
It's difficult because we'restill kind of in that state
where, you know, we're supposedto be in those years where we
travel together and, you know,we've saved money to go on

(40:58):
vacations and that kind ofthing, but that's just not
something that we're able to do.
leaving Noah for a week to dothat is just not feasible,
because we don't have that, um,a place for him to stay, you
know, that we feel comfortablewith him staying.
Right.
And also that that other personfeels comfortable.

(41:19):
'cause it's a lot to take careof Noah in that aspect.
Okay.
And so he goes with us whereverwe go.
And, um, that can get priceywhen you have two adult, three
adults going.
Yeah.
And so, you know, we we're kindalike the president and vice
president don't travel togetherand unless Noah's with us.

(41:41):
So that's, that's, that's funny.
So our, our golden years will bemuch different I think, than
others.
I'm okay with it.
It, it's not like, again, notwhat we expected, but we are
very blessed because, and I, Ihate to use this phrase and I
know I hear it all the time.

(42:02):
Some men, it's terrible to say,but there are people that have
it so much worse than we do asfar as, not worse, as in their
child is worse just.
And their circumstances are somuch harder than our
circumstance.
Mm-hmm.
So I feel blessed in what we dohave, if we have to take him on
vacation with us, that'scompletely fine.
Yeah.
Yeah.

(42:22):
I know he had mentioned earlierthat it was difficult for him to
sleep.
How is that now?
That has been fabulous.
they have put him on a sleepmedication, so now he's uhhuh
taken that because ourdevelopmental peds told us that
he could take Benadryl.
But now there are studies thathave come out saying Benadryl

(42:43):
causes dementia.
And so I'm like, what?
Wait a minute.
We don't need that happening.
So I actually, about three weeksago, I went to, his primary care
physician and said, we need tolook at medication because
mm-hmm.

(43:03):
He doesn't sleep well, uh,still.
Mm-hmm.
And I know this because I don'tsleep well'cause you know,
hormones.
But, um, and I know when he's upand now he stays in his room and
he is not picking up the sheetrock and he just, you know,
yeah.
Lays in his bed and that'samazing.
'cause I don't have to worryabout him getting up doing

(43:24):
things and all that kinda stuff.
But, um, so now we have him onTrazodone, which is a very
common sleep medication forautistic children and adults.
Yeah.
And he's doing great so far.
Um, we've gotten a Fitbit, Ijust got that last week to, so
we can regulate his sleep andsee how he's doing because two

(43:44):
years ago he had a, a grand malseizure.
and that's the first one he everhad.
And it scared us to death.
It was horrible.
And the neurologist told us thatit could possibly be due to lack
of sleep.
And so now I'm just trying toget a, a hold of that situation.
But he hasn't had one, he hadone two years ago and he hasn't

(44:05):
had one since.
And the neurologist, released usand said that he probably would
never have another one.
So praise God for that.
Oh my God, that's awesome.
Yeah.
Fingers crossed.
Yeah.
Well, I love and wanna applaudyou that you have like a spirit
of gratitude and you reallyembrace that.
'cause that's something we'vetalked about in a lot of our

(44:26):
episodes so far is how fargratitude can take you, whether
it's physical, emotional health,like just so many things.
So, mm-hmm.
That's great that you have thatthinking.
Another one of our questions,and I feel like this might be
loaded, so don't feel like youhave to like answer all of it,

(44:46):
but I'm just thinking as themother of a child who had
learning disabilities and giftedat the same time, and I've.
A tiny little peek out of yourwindow we had to deal with, with
the school and the counselorsand whether or not they were
gonna support him and when theywere gonna cut him off and let
him loose.

(45:07):
So, can you tell us a little bitabout like maybe challenges when
you were mainstreaming schooland if you have any, or
healthcare or socialenvironments?
How were you able to kind ofwork through that?
Were there any, I guess I wouldsay, life changing adaptions,
that you were able to do that wewere like, well, once we figured

(45:28):
out that this is what he needed,we were able to advocate for
that.
what were your re resourcesavailable perhaps?
as far as the public schoolswere concerned, I didn't really,
a lot of people my first, veryfirst IEP meeting, I didn't know
what that was.
I had no idea what we weregetting into.

(45:51):
You know, in, in autism you haveso many acronyms and to memorize
all that stuff and understandall that stuff was overwhelming.
I was just about, you know, Ijust need to have worry about my
child and his health right now.
And so the very first IEPmeeting, we had the Autism
Society came in with us and thenit became this free for all

(46:14):
within the meeting between thespecial needs coordinator, the
teacher, the autism, advocate.
And I didn't even know what wasgoing on.
And it was over, unfortunately,another child.
So we were just kind of being,you know, lost in the whole
shuffle because there were somany things they wanted to have

(46:35):
done in the schools for autisticchildren.
And they were kind of using mytime as their platform.
And so I made the decision thenthat.
I wasn't going to have, um,someone come in and advocate for
us.
I was going to be his, you know,I was going to do it.
I was gonna be hisrepresentative, and that's how I

(46:57):
continued through the rest ofthe years.
The thing with Noah is he's kindof an anomaly.
A a lot of the teachers haven'treally seen an autistic child
like Noah because of the factthat he's able to speak, but he
can't form conversation andcan't form speech.

(47:20):
And so it's not this severelyautistic child who just makes
noises and cannot be taughtbecause he is so severely
autistic and he's not that highend where he's, he's, um, high
functioning autism to where it'smore of a social situation then
it is educational.

(47:40):
If that makes sense.
So he is left in the middlewhere he wasn't a behavior
problem and he wasn't, uh,intelligent enough to go into a
classroom to do an inclusiontype thing.
So it was difficult for them tofigure out where to put Noah.
And Noah became a learner in hisenvironment, so he would learn

(48:02):
just by watching people aroundhim.
And I was okay with that.
I really was, because I had, Iunderstand what Noah can do and
I'm not limiting what Noah cando, but I understand how far he
can go and how much anxiety youwould bring upon him if you
tried to make him read at afifth grade level.

(48:23):
So a lot of my, talk in IEPmeetings was about Noah being
comfortable about, you know,them watching him, especially in
high school when he got older,especially when he got past 18.
Because you know what I, my fearwas that he loves girls and he

(48:46):
loves girls that look likeDisney princesses.
And they will wanna hug Noahbecause they love Noah.
And so they're like, hug me, hugme.
You know, and just giving himfree range in that.
And him 18 and the girl 14, youknow, now we're looking at, this
is a, a jailable situation.
I don't think jailable is aword, but you know what I'm

(49:07):
saying?
I mean, this is, he can bearrested for this.
It is.
Now we will put it in thedictionary, but that was a great
concern for me.
So my IEP meetings were alwaysabout put your eyes on him
constantly.
You need to always have thatthere.
because don't let him go to thebathroom alone.

(49:28):
who's in the bathroom, when hegoes in the bathroom, right?
Mm-hmm.
And, you know, those were thethings that I advocate the most
for.
And I did it in a way that I wasnice about it, but they knew
that if it wasn't done, I, Icould not, I could be the other
way if I had to be.
You were right.

(49:49):
Yeah.
But I didn't, I feel like someparents go in with this guns a
blazing.
If that's who you are, that's,that's who you are and that's
how you work.
But they, I also know fromexperience that they will not
work with you going in with thatwhole, I've got a lawyer in my
back pocket attitude.
I tried to have a good attitudewhen I walked in there.
And they're not fun If you'vebeen in an IEP meeting, they're

(50:11):
boring as all get out.
so I, I kind of, my, my journeywas a little bit different in
that it was all about his safetyand all about his.
Anxiety level more so than itwas about his educational needs
Uhhuh.
So if I answered your question,no, that was the perfect answer.
Okay.
Noah sounds very lucky to have amom.

(50:32):
That's such a good advocat forhim.
Oh, thank you.
I don't do well with complimentsby the way.
So if I start going Who?
Who does?
I'm like, Ooh.
Alright.
Well next we wanted to bridgeinto talking about societal and
family support, and we wanted toask how your family or social

(50:52):
circle reacted to Noah'sdiagnosis, whether that's
immediately or in years after.
And how has their support ormaybe lack thereof impacted this
journey you guys have been on?
Hmm.
Well that's loaded.
Choose my words wisely.

(51:12):
I felt like there was adequatesupport as far as from afar.
Does that make sense?
Like, I love you, I'll pray foryou.
I'm sorry that you're goingthrough this, but as far as let
me come to your home and dowhatever I can do to help you,

(51:36):
that wasn't there very much.
again, I wanna preface that bysaying that a lot of it was me
too, uh, as far as letting go ofthe reins with that, and feeling
that he's safe in thatsituation.

(51:56):
My parents.
Had a lot going on in their ownlives to be focused on that.
you know, Erin's mom was really,did a good job as much as she
could with Noah and, you know,she was always supportive.
It wasn't like somebody wouldcall me up and go, Hey, I think

(52:17):
you need a date night with yourhusband.
Let us come stay with Noah.
That just didn't happen ever.
But now my friends would, dothings for us and ask, you know,
can we help?
What ways can we help?
That kind of thing.
But I think, I don't think itwas a lack of, I don't want to
do this for you.
I think it was more of a, Idon't know how to do this and

(52:40):
I'm, I'm afraid that I might notdo it right and something could
happen.
That fear that people havemm-hmm.
I think was.
Probably what kept them from,'cause I have wonderful friends
and I have a wonderful supportsystem, and I think that's
probably more what was the issuethan people not wanting to help,

(53:01):
if that makes sense.
But I would just say tocaregivers, if there's
caregivers watchinggrandparents, aunts, uncles,
friends, what I have said toothers in the past is, you don't
have to cure the autism whilethey're out on a date for three
hours.
That's not, you know, just makesure that the child doesn't die

(53:22):
before they get home.
If that, if you take themoutside and they pour sand over
top of their head and they burythemselves to their shoulders,
then so be it.
Just clean'em up.
But as long as they don't diebefore the parents get home, you
are golden.
You don't have to try to like,you know, solve the world's
problems and the three hoursthat they're gone, just chase

(53:44):
'em.
Yeah.
That's all, you know.
Yeah.
Put your running shoes on andgo.
If they, yeah.
Throw a plate, clean the plateup, it's no big deal.
Just, yeah.
You know, you don't have toworry so much.
It's not like they're gonna ripyour face off when you're
sitting on the couch.
You know?
You're not, yeah.
You're not babysitting agremlin, you're just babysitting

(54:05):
a child because that Don't bescared.
Wow.
Wow.
That's just, that could be goodfor a lot of people to hear.
I think.
I mean, even me, I've, I haven'thad a lot of experience with
autism and feel like I'm alreadylearning so much just from this
interview, but I think a lot ofpeople do have like just unsure
feelings.
'cause they're not, they justhave no idea, like really

(54:28):
anything about it.
So maybe hearing that willenable some people to help
people in their lives that havekids with autism and, and I
mean.
Just a couple hours is betterthan nothing.
If that's all you can give,that's, that's perfectly fine.
But just let the parents, youknow, go and sleep in their car
for two hours if that's whatthey want to do.

(54:50):
Or just be able to go out toeat.
I mean, we Right.
Couldn't go out to eat with Noahbecause he was like the
Tasmanian devil on speed nomatter where we went.
And I recall we took him to,Ryan's when they were open and
easily, and we went through thisbuffet and he, he liked to, peel

(55:12):
gum off the bottom of tables andput it in his mouth, which is so
absolutely disgusting.
And when you can't take your eyeoff a typical child for a
minute, you can't take your eyeoff an an autistic child for a
second.
I mean, in a split second, thethings they can come up with.

(55:36):
And so he was acting all kindsof ways.
I mean, he was just all over theplace.
He was crawling under tables.
He was yelling, screaming.
So I started signing to him signlanguage.
Let me first say, I have no ideahow to do sign language.
I can spell my name and that isit.

(55:56):
So I started signing becausepeople seem to have more
sympathy towards someone who hasa deaf child because they see a
physical problem there thansomeone who has an autistic
child.
'cause they don't understandautism.
And so as I'm signing to him, Icould see the people's faces
like, oh, okay, that child'sdeaf.

(56:18):
What I didn't think about wassomebody being there knowing how
to do sign language and go, whatin the crap is she doing?
Because nothing she just did isactual sign language.
I didn't care though.
I was just like.
Yeah.
Yeah, exactly.
And so you know, him crawlingunder that table, eating
people's gum and screaming,these people were like, oh, but

(56:41):
he's deaf.
And I was like, yes, exactly.
He's deaf.
So we do what we do to survive.
So keep the child at home so theparents can go to Ryan's and get
that gross buffet, big fat yeastroll.
Yeah.
I wish I had one right now theyhave.

(57:02):
I don't even know they haveRyan's anymore.
But that was my, there's no moreRyan.
Yeah, no Ryan's, no Quincy we'redone for, but just to be able to
go out and eat without yourchild crawling under tables is
just a godsend.
Huge.
So that's that's all you have todo.
Yeah.
That's all you.
And you can keep a child alivefor two hours.

(57:23):
Or if you can't, you shouldn'tbe babysitting children at all.
I'm just joking.
Probably not at this.
It's a two hour window.
Oh my gosh.
You're actually hilarious,Tracy, isn't she?
I can tell her how fun you were.
I just thought, I just, I know.
I have no idea.
so then moving on about that, isthere a misconception about

(57:45):
autism that you wish clear upfor others?
A misconception about autism?
Not every autistic child's thesame.
There is a vast, the spectrum isvery wide.
if somebody says, I have anautistic child, that could mean
that they are socially,challenged.
And, but they may can, you know,have all kind of conversation

(58:08):
with you.
They just, process theirthoughts differently.
They process the worlddifferently.
Back in our day, they wereprobably just considered, I hate
to use the word, but consideredstrange or weird or, you know,
eclectic or whatever.
Yeah.
And so that, there's that.

(58:28):
And then there's the severelyautistic, which is, they could
be nonverbal.
They could rock and flap theirhands because they're stemming
physically, so you see a lot oflike banging their heads back
and forth, or hitting the wallor, you know, severe, actions
that they take.
they could screen, they couldjust, you know, there's a lot of

(58:51):
physical things going on there.
Uh, and then they could be inthe middle of all that.
Now, I will say statistically,Asperger's and high functioning
autism is what?
the main group of autism is,diagnosed in that area.
So, okay.
Where Noah's diagnosed is asmaller amount of individuals.

(59:12):
The higher end is what is, whatthey call level one autism.
Now.
Now there are levels and it'sconsidered the level of care
that autistic individual needs.
So, level one, being highfunctioning, being able to
function in society alone.
Just need like, a little bit ofguidance in certain things,
whether that be financially or,or socially or whatever.

(59:33):
And then level three, which isNoah will, will need constant
care and daily routines for theremainder of his life, unless of
course there's a miracle, whichI'm not limiting that, not, you
know, but he will always needhelp with daily activities and,
someone to take care of him.
So.
Yeah.
Mm-hmm.

(59:53):
Okay.
And again, there's more peoplelevel one than there are level
three, so.
Gotcha.
I think it's a Netflix show.
Have you ever watched Love onthe Spectrum?
I have.
I have, I have.
I was wondering if you have, meand my husband have watched, I
think all the seasons makes ourheart so happy.

(01:00:13):
That's probably the most I'velearned about autism up until
this point.
you know, even with that love onthe spectrum, you, they're high
functioning autism.
That's a lot of, you know, I cango out and be on a date, but you
saw socially it's awkward forthem.
Um mm-hmm.
And so I think, I love the factthat there is so much awareness

(01:00:34):
about autism, but I think whenyour child is on the lower level
of that, um mm-hmm.
It kind of takes away from thatneed because a lot of people see
love on a spectrum or see thathigh functioning autism because
a lot of TV shows, like therewas a TV show called, um, I
can't remember the name of it.
Back in the day, it was a familyand I can't remember the name of

(01:00:56):
it now, but he was highfunctioning.
And so I think a lot of peoplelook at autism like, well, it's
not that big of a deal becauseat least they can be in society
and function and people can getjobs and do that kind of stuff.
It is that big of a deal whenthey're lower on the spectrum in
the levels.
So, and you don't see a lot ofthat represented in these

(01:01:18):
movies.
Like the movie that just cameout, well, I'm really bad at
this, uh, cultural thing today.
Amazing Boy or something.
It just came out at the movietheater.
He's higher functioning that'sthe picture that's being painted
with autism.
And it kind of, and I'm not,please hear me when I say that.
I'm not saying that it shouldn'tbe focused on that, but again,

(01:01:43):
those on the lower end of thespectrum are getting lost in
that higher end.
yeah.
Well I definitely think you havea point there'cause me not
knowing.
Anything about autism and thenwatching that TV show, and
that's about the only context Ihad for people with autism.
I mean, I did study psychology,so I had learned a little bit

(01:02:06):
about autism in school, so Iknew it was a continuum and it
was very varied case by case.
But yeah, for a lot of peoplethat don't have that knowledge,
I'm sure they'll watchmainstream media and have an
idea of what it is and what itisn't, when that may not be the
case.
Right, right.
When it comes to, um, laws beingmade and, and you know,

(01:02:27):
different, um, funding and thatkind of thing.
Mm-hmm.
Mm-hmm.
What concerns me is those whoare on the lower end of the
spectrum, of course, need morefinancial help and need more
therapies and need, You know,they have more medical issues
and that kind of thing.
'cause there are a lot ofphysical issues that come along
with autism.
that if we get so focused on thehigher end of the spectrum, that

(01:02:52):
these children that are comingup on the spectrum are not gonna
get what they need financiallyin order to be able to function
in society later on.
Because it is proven.
The more help you get when theyare diagnosed at a young age,
the better off they're going tobe as adults.
And that's just not happening.

(01:03:13):
Mm-hmm.
You know, the, the childrenaren't getting what they need at
three and four and five yearsold and, you know, I hate, I
really wish they would, put aspotlight on these.
Yeah.
These lower end.
Right now there's spotlight insomething called the telepath
tapes or telepathy tapes orsomething.

(01:03:34):
As an autistic parent, it getsvery irritating when people,
come up with these crazy thingsand you feel as an autistic
parent that if, I bet if I trythis, I'm going to cure my child
of autism, because that's howthey push these products.
And this, you know, it's aboutthese tapes or a documentary

(01:03:56):
about how these nonverbalchildren, autistic children, are
able to use telepathy to connectwith their parent or their
caregiver or whatever.
Now, I'm not a doctor, I'm not apsychiatrist, I am not a
neurologist.

(01:04:16):
But I can promise you, eventhough my child is considered
nonverbal, we are not connected.
Telepathically, wouldn't that begreat?
But how come your child can dothat?
And my child cannot See.
It's just one more thing thatyou put on an autistic parent to
say, you're not as good as thisparent because this parent can
talk to telepathically to theirchild.

(01:04:39):
Okay, well I can see that.
You know what I mean?
I mean it's, and yeah, don't getme started about vaccines'cause
it's the same way.
Do I wanna know?
Yeah.
That I gave my child a vaccinethat caused his autism?
Absolutely not.
I don't want to know that.
I mean, I'm not gonna get in thefight right, about vaccines and
if they cause autism or theydon't cause autism.

(01:04:59):
But I have two children, they're20 months apart, that got their
shots in the same doctor'soffice.
My oldest has his master's andhe is a, you know, he teaches
history.
He's extremely intelligent andyou know, I, it's just hard for
me to believe that these shots.
That they got caused thisautism.

(01:05:20):
And right now we're seeing theupswing in measles.
And I think it's because peopleare so terrified to get their
children vaccinated becausethey're a fear of autism.
There's a lot worse things thanautism.
And that's watching your childdie at five years old because
they didn't get the measlesshot.
or the rubella shot.
And you know, it's, it's a lotof guilt that people put on

(01:05:41):
autistic parents.
Uh, and it's so much to dealwith when you're dealing with
the daily needs of your child isall the guilt.
Yeah.
Did you try this?
Did you try that?
Are you doing this?
You know, I will climb down offmy stairs like a big mental load
to carry.
Yeah.
And when they focus on the highfunctioning, kinda what it, what

(01:06:03):
I'm hearing you say is it takesthe focus and the funding off of
these level three.
Yes.
And.
The folks that need a whole lotmore support because we've kind
of, as society and entertainmentpainted a different mm-hmm.
picture.
Mm-hmm.
Of what it is and what it lookslike.

(01:06:23):
Right.
And I'm not saying that therearen't individuals on that
higher end that need that kindof help as well.
Right.
What I'm saying is the focus isbeing pulled to that end of the
spectrum.
Right.
And yeah, again, I understandthat more people that are
diagnosed with autism are onthat higher end, but you're

(01:06:43):
leaving the ones you know, thataren't kind of in the lurch
because you're not buildingprograms and you're not building
awareness.
And it's just like when Noah wasdiagnosed, Rainman was all we
knew, and Rainman was thatdifficult, you know?
I mean That's right.
That's, and he was a genius, soI could handle that.

(01:07:04):
Yeah.
Yeah.
Mm-hmm.
Yeah.
I'll come down off my soapbox.
Excuse me when I climb down theback.
No, you're good.
I into a crowd.
Is there anything you would wantother women, specifically women,
because that is the majority ofour audience and focus group,

(01:07:28):
who are parenting autisticchildren to know or hear?
Is there like, and we've talkedsome of that about this, so if
you say, I've already said this,we could move on.
But, if there's just like asoundbite or something that
maybe you could say to grab theattention of specifically women
who are struggling trying tonavigate.

(01:07:49):
The system, connect theirchildren and then also connect
with their non-autistic childrenin a way that's meaningful and
then still have a relationshipwith their husband.
Oh, and by the way, they'refriends.
You can do all of that forsimply 9 99.
I'll give you this year, Mail itto PO Box.

(01:08:12):
Who cares?
Anything.
You know, the one thing I wouldsay is, um, and oh, there's so
much I could say.
I will say that I do feel forthis generation of mothers who
have children that are comingonto the spectrum, because

(01:08:33):
social media can be such adouble edged sword.
I see it with my students too.
But just, you know, us keepingup with the Joneses in our
generation was a lot differentthan what.
Keeping up with the Joneses isin this situation with, with
social media.
And I really think that peopleget bogged down in that, in that

(01:08:55):
they have to feel like they haveto be as good as that autistic
mother who has 120,000 followersand she's doing this, this, and
this.
And, you know, your situationcould be completely different
than that person's situation,financially, emotionally, how
you're made up.

(01:09:15):
I mean, if you're an introvert,this path is difficult because
you have to step into a rolethat you would probably never
take.
You know, be upfront and be anadvocate and be out there and,
um, assertive.
And if you don't have thatpersonality.

(01:09:36):
It's difficult, but you havesomething that you can give.
You just have to figure out yourway of doing that and be okay
with that.
Because my way of doing it andyour way of doing it could be
totally different, but yet cometo the same conclusion for your
family.
So what is best for you and yourchildren is what you should

(01:09:56):
focus on and not what issomebody said on Instagram or
TikTok or whatever, right?
Yeah.
Because what happens when youcan't, when you cannot reach
what they have reached, thenthat's just one more, you know,
soared in your heart because youcan't be that person and it, it

(01:10:18):
just tears down your self-worth,uh, every time you do that.
Yeah.
And you know, I, I would simplysay what is best for your child?
You live with that child everysingle day.
You know what that child needsand, What needs to happen for
him to, for his future and yeah.
You know, advocate for that anddon't try to do things that,

(01:10:41):
that steps you so far outta yourcomfort zone that it brings
anxiety to you doing it.
I mean, that would be my, mybiggest advice to mothers I
mean, you can learn a lot fromsocial media.
Just don't let that be how youmeasure yourself as a mom.
You can only do so much.

(01:11:02):
You can only do so much for thatother child in your family to, I
mean, that typical child, it isa difficult road to have an
autistic child and a typicalchild, because you're parenting
them both so differently and youhave a lot of mom guilt in the

(01:11:22):
way that you feel like you'vegiven that.
A special needs child, so muchattention that you forget are,
are just say, I'm going toreally focus on this other child
that I have tomorrow.
And um mm-hmm.
And that's, that's really hard.
It's really hard to balanceboth.

(01:11:44):
And I have a lot of mom guiltthat I still deal with to this
day, for my eldest.
I don't know that he feels thatway, but I feel that way.
You know, you have to just, youdo have to set aside that time
to, to put towards your, eventhough you have very little
left, but mm-hmm.
You just have to figure out whatkeeps you going and do that.

(01:12:09):
So That's great, I willencourage moms.
this girl wrote, it's only abouta page long, but she wrote this
thing called Welcome to Holland.
Have y'all ever heard of that?
Her name is Emily Kingsley, it'scalled, and she wrote it in
1987, but it talks about, shehad always dreamed of going to
Italy and so she got theguidebooks and all this and, and

(01:12:32):
really saved up to do this tripto Italy.
And she was all for it.
She got on the plane, she wasready to go.
She felt very, prepared for hertrip to Italy.
And this is an analogy of she'sa special needs mom.
So this was her analogy of whatit was like to have a special
needs child.
So as she's on that plane, justexcited about this trip, uh,

(01:12:54):
they land in the, Stewardesssays, uh, we've landed in
Holland.
And she immediately kind ofstarted freaking out because she
didn't want to go to Holland.
She didn't ask to go to Holland.
She didn't, she wasn't preparedto go to Holland.
She doesn't, you know, didn'twant to be in Holland.
And then she realizes, well,it's not like this horrible

(01:13:15):
place or a, a place full ofpestilence and, you know, um, a
dirty place, but a beautifulplace and a slower paced place
in Italy.
And it had windmills and tulipsand, you know, just this,
wonderful landscape.
but not what she expected.
And I'll just read the lastparagraph because it's just an

(01:13:39):
amazing paragraph.
It says, but every one you know,is busy coming and going from
Italy, and they're all braggingabout what a wonderful time they
had there.
And for the rest of your life,you will say, yes, that's where
I was supposed to go.
That's what I had planned.
And the pain of that will never,ever, ever go away because the
loss of that dream is a very,very significant loss.

(01:14:02):
But if you spend your lifemourning the fact that you
didn't go to Italy, you maynever be free to enjoy the very
special, the very lovely thingsabout Holland.
So it's very sweet.
That's amazing.
That's so good.
Yeah, I highly recommend it.
Welcome to Holland is the nameof it.
Okay.

(01:14:22):
Definitely check it out.
Alright, we have a couple morequestions for you.
One about the future, and thenone is our closing segment.
So in terms of the future, doyou have any hopes for Noah's
future and his independence ashe grows older?
Well, I mean I, I would hopethat he will be able to take

(01:14:44):
care of himself independently.
I mean, as much as I would.
Love to age backwards or find avampire.
Yeah.
So I can stay this same age,whatever.
Apparently that's not gonnahappen'cause that's not a thing.
But I'm getting older and youknow, reality is setting in that

(01:15:07):
one day I'll be 70 and then I'llbe 80.
And you know, we don't want tothink about our children going
before us.
So I have to really think aboutthe future of who will take care
of him when I'm no longer hereand who will take care of him.
Like I've taken care of him, youknow, who's gonna be that
person.
And so I try not to dwell on itbecause I try to have the faith

(01:15:30):
that I know God will take careof him because of how far God
has brought him already.
So I don't want to limit God inthat.
And that, you know, if hewould've told me Noah when he
was three, if he would've toldme he was going to be like he is
today at 25, I wouldn't havebelieved a word you said.
Right.
But, so I can't say that hewon't be totally different when
he is 35, I have to prepare forthat.

(01:15:52):
I have to prepare for hisfuture.
Yeah.
And who, who will take care ofhim is always in the back of my
mind, you know, what will happenmm-hmm.
In that, that he has to havethat level of care.
Mm-hmm.
Always.
So was that, did I answer yourwhole question?
I'm sorry.

(01:16:12):
Yeah.
Yeah, you did.
You killed it.
Of course.
I wasn't, I didn't know if therewas a part BI couldn't remember.
I only remembered the firstpart.
First part.
Most important part.
Okay.
All right.
So something we do to close outevery one of our podcasts, I'm
not sure if you listened to anyof them.

(01:16:32):
We call it what she said, where.
Usually in a regular episode, wewould just find a quote or
something that connects to thetopic of the day.
And then in our interviewepisodes, we like to get it
straight from the source.
So in this case, you're gonna beour she and the what she said.
Okay.
So we wanted to know is there,and if something you feel like
you already said in thisepisode, you can always

(01:16:54):
reiterate it as well.
Is there a quote mantra or justa general piece of wisdom that's
helped you navigate thisjourney?
Being a mom of an autisticchild, like I say, I think when
you find peace in thissituation, when you stop trying
to, cure autism and just right,sit in your space and lean into

(01:17:22):
what you're going through, Ithink that it becomes an, I
won't say an easier journey, buta journey that, You can travel
and, not feel so overwhelmed.
and, you know, do the best youcan and don't worry about being
supermom.

(01:17:42):
Just do what you can do and, youknow, love the people around
you.
Support your other children.
Love your other children, but bereal with your children.
And just say, this is a, we'regoing through this as a family.
It's a difficult situation and Iunderstand how it is for you and

(01:18:03):
how what you might must be goingthrough as well.
It's not all about the mother,it's about the entire family.
So just embrace that family unitand travel it together and find
peace in it all and find thegood times and the silver
lining.
And try not to focus on, youknow, the, the bad times and

(01:18:24):
humor.
I put a lot of humor in it.
Yeah.
Because there's some fun stuffautistic, autistic children can
come up with.
They can come up with some easyYeah.
You definitely found the humorin it, and we really appreciate
your time.
you've made a very difficultconversation seem, not easy, but
just obtainable.
What you're doing is things thatyou worked hard to do, but

(01:18:48):
anybody can pick this up andsay, Hey, I can start right
here, which is really what we'reabout.
Yeah.
Like finding simple, practicalthings that people can implement
that day.
Yeah.
They don't have to go and read abook.
They don't have to go and see adoctor.
And you've been incredible forthat.
Right.
And we appreciate your time somuch.
We're gonna have Tracy back on,a little bit later.

(01:19:10):
she, um, actually has, withoutwords.
Which is an Instagram page thatshe has, uh, recently started
with Noah and it ha is goingcrazy and a little viral, and so
we can't wait, you know?
Yeah.
We wanna, we wanna beinterviewed on your program.
Well, hey, bring it on.

(01:19:32):
I'll do it.
I'll go ahead and link yourInstagram and our show notes.
Yeah.
So that when this episodereleases.
Okay.
So yeah, listeners go and lookin the show notes.
You can see the link to Tracy'sInstagram so you can get a
glimpse inside Noah's life and alittle bit more about him and
all the joy he brings and howspecial he is.
Yeah, he's pretty amazing.

(01:19:53):
Thank you so much, Tracy.
Well, I enjoyed it.
Yes.
Thank y'all for having me on.
Thank you so much.
Yes, thank you so much.
Okay.
All right.
And that's the, that's the tea,baby.
We'll see you later.
Bye.

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Autism Awareness from a Mom's POV | Tracy Byrd Shares Her Parenting Journey