January 1, 2025 • 49 mins
Exploring the complexities of autism and family dynamics, this episode delves into vaccine concerns, genetic traits, communication challenges, and the necessity of parental advocacy. Listeners gain insight into the ongoing journey of understanding and supporting their children with autism.
• Discussion on the potential link between vaccines and autism
• Recognition of family traits and hereditary behaviors
• Communication barriers and the detective role of parents
• Importance of steadfast advocacy in supporting children
• Loneliness and isolation felt by parents of children with autism
• The power of music and shared activities in bonding
• The practice of gratitude amidst challenges
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (00:18):
Hello and welcome to the Parenting Severe
Autism podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
Today we're wrapping up parttwo of the interview with Dad.
And remember, if you'reinterested in supporting the
podcast in any way, you canclick the little support podcast
button on your podcast playeror you can visit my hosting
(00:39):
website, psa.
buzzsprout.
com.
I've still got merchandiseavailable as well.
You can just follow all of mylinks from there and if you had
any questions, comments orconcerns, you are welcome to
email me at contact.
parentingsevereautism@ gmailcom.
The next couple of questionsare a little more heavy and
(00:59):
maybe a little more triggeringfor people, so I just wanted to
say that first.
But my question is about thevaccines.
How do you feel about vaccinesand the possibility of them
being a catalyst to conditionsthat may already exist in order
to actually create autism?
Jason (01:20):
To awaken a sleeping giant?
Yes, Okay.
Well, I've thought about that.
Sometimes I joke and say youknow, we're all on the spectrum,
it's just that Jake's higherfunctioning you know, because
there's definitely days when Idon't feel like I'm functioning
too well at all and I don'tcommunicate, you know very well,
and to be able to relateemotionally or mentally to
another human being seems to bea stretch, you know, sometimes I
(01:48):
don't even feel like I can talk, right, you know.
So I mean, we just talked aboutautism, didn't we?
But I do have family membersthat don't seem to have the
ability to form genuinerelationships on so many
different levels with otherhuman beings.
I see this.
I see extreme narcissism.
Autism, it's a very selfishthing.
I mean, no autistic kid reallyfeels bad that he has autism and
they can unleash hell on you,you know.
And it's not like a person whocomes home from work and says I
(02:11):
feel bad because my bipolardisorder really showed itself
today at work.
Yeah, not going to happen here,you know.
But facts are facts.
When we look at the vaccine, itused to be administered measles
, mumps, rubella in threeindividual doses.
When they combined that vaccineinto a single cocktail, it
(02:31):
required a different type ofpreservative, which is basically
a mercury-based preservative,and the epidemic of autism soon
followed.
Let's talk about our parents'generation.
There was a handful of shotsthat they had to take, you know,
during grade school, highschool, all that.
We're talking about a 300%increase in vaccines over the
spread of a generation and ahalf, by the pharmaceutical
(02:52):
companies themselves.
They knew that this stuff couldcause cognitive disorders.
They knew, before they sent itoff to be consumed, that measles
, mumps, rubella vaccine isgoing to cause cognitive issues
(03:15):
in children.
And the woman that was incharge of the whole deal not
only did not lose her job, shewas granted a very large
position at the FDA, so sheactually got a raise, she
actually elevated her status byapproving this poison.
And the facts are the facts.
I mean, if you want to look upand see how many children out of
100 children were diagnosedwith autism in the 90s, compared
to the 2000 to 2010.
(03:37):
And then we have to look at seewhat's changed.
What really changed?
Was it diet?
No, was it that our waterchanged drastically?
What changed?
And the answer is unequivocallythe vaccines.
So, yes, I do believe thatvaccines are to blame for the
epidemic.
Shannon Chamberlin (03:55):
We've had 24 years of him being alive and 21
of them have been diagnosedwith autism.
During all of these years thatwe've been raising him and
dealing with everything as itcomes up and over and over again
, and then the new things on topof that.
And looking outward to all ofthe extended family members.
The more time that goes by andthe more I see of extended
(04:15):
family members, the more I startto wonder this Do we think that
there are signs in other familymembers who are completely
functioning, they're well off,they're doing fine, they have no
diagnoses of any kind oflearning disability or any
developmental disability,everyone's fine.
But do we see things that maybeare tipping us off, that this
(04:38):
is kind of in the blood?
Jason (04:41):
I think that on some level it exists within us and it
is there.
I think that some people thatare diagnosed with autism today
they're able to get a level ofcompassion that they were not
going to get in the 80s andprior, when people hadn't heard
this.
It seems like in the past therewas just a hey, toughen up
attitude.
You know what I mean, and itwas survival of the fittest, and
(05:04):
if you fall behind, you getleft behind.
You know, there was a time whenpeople like Jacob would have
just been institutionalized,period.
They would have been labeledmentally retarded and they would
have been institutionalized forthe rest of their lives.
You know, now they're viewed alittle different and right.
Can you imagine if they weren't?
I mean, that would be a lot ofinstitutions to house all of
(05:26):
these.
You know what?
One out of 30, one out of 30,40 kids now being diagnosed.
Shannon Chamberlin (05:30):
Yeah, Thank you for your input on that.
Personally, I believe the sameof what you said that it may be
lying dormant in everybody weall have our peculiarities and
our particular things.
You know and I've mentioned thisin several episodes, that I get
it.
What bothers him and whatirritates him, what pisses him
off?
Hey, I feel that way too, I'm..
(05:51):
.
You know, I get that, I get it.
And like you said about whenyou took him to school that
first day, you were just gutwrenched about it about leaving
him there with all thesestrangers, and he didn't think
anything of it one way or theother.
Well, I was the same way when Iwas in preschool and
kindergarten.
I didn't give a shit where myparents were, I just wanted to
be where I was.
(06:12):
And so those little things Ilook into myself and I recognize
parts of what they call autismin Jacob, in me as a regular
functioning adult.
And then I look at your familymembers related to Jacob and I
think, wow, I think that maybethere is something just running
(06:33):
in the blood.
And I look at his maternal sideand I know that they're a
little screwed up too and I justthink that you know, like with.
Okay, so my family my dad hadthree daughters before he
married my mom.
He had three daughters withanother woman.
We all have Irish names butwe're completely different, but
at least two of us sound alikeon the phone and each one of
(06:56):
them had a defect.
And one main reason I used tosay it was a big reason I don't
want kids is because I didn'twant my kid to have a birth
defect.
My dad had a cleft palate.
One of my sisters is allegedlylike he, really really big, just
tall, big hands, you know, andjust just weird, you know.
So each one of us has.
(07:17):
I don't know what my problem is, but I know it's in there
somewhere.
My luck, I'm going to have ababy with big hands, my problem
is, but I know it's in theresomewhere.
My luck, I'm going to have ababy with big hands.
Yeah Well, my dad had a cleftpalate, so that was a big
problem for him growing up.
And you know, all of us havethings and I think that, like if
I would have had one, I mighthave had a really defective baby
(07:38):
, and I didn't want to put aperson through that and I didn't
want to have to go through itmyself.
So I think that, looking at thegenes involved in creating him
and his two half siblings, Ifeel that, you know, maybe there
is a little something that wasburied and maybe the vaccine is
was the catalyst, as youmentioned, because I do see
things that are weird in thesepeople that are related to him,
(08:02):
but not you, of course.
Jason (08:03):
Yeah, it's like insomnia, insomnia if you have it, it can
be a catalyst.
If you develop insomnia and youhave any underlining mental
issues, then insomnia can be acatalyst to bring out that OCD
or schizophrenia or somethinglike that.
And yeah, I mean there's plentyof mental instability, you know
(08:25):
in the whole the whole family.
I mean, it's like, you know Isometimes, you know I have to
fight tooth and claw, you know,to make it out of my own head,
my own space, and I feel thatprobably is one of the biggest
things me and Jake haven't come.
Shannon Chamberlin (08:43):
Yeah, I do try to remember that.
I see a lot of it, you know inhim where I'm just like oh dude,
I totally know how you feelright now, even though you can't
tell me, I see it, and that'snice, I think, when you're able
to kind of recognize faultswithin yourself that are just
part of you.
But when they're attached tosomeone with severe autism now,
they're glaringly obvious traitsthat you would normally think
nothing of and those traits weall share.
And when we can recognize themin people who can't communicate
(09:06):
them to us, I think it gives ussome common ground.
Jason (09:09):
That goes into the biggest thing about.
To me, the most challengingpart of this whole situation,
you know, is it is a blessing tobe able to express yourself.
You know it's a gift to be ableto say I feel angry because
this or that or the other thing.
The biggest fear that we have,parenting these sweet little
angels is they can't tell us.
(09:30):
They don't tell us.
We see how they feel, based onhow they're behaving, and that's
it.
How often is that accurate forourselves?
How often does that happen?
You know the fear of leavingthem with anybody.
If anything happens, they arenot going to tell you about it
when they get sick.
You have to try really, reallyhard.
You have to become a detectiveto figure out that their stomach
(09:52):
hurts because they're not goingto tell you.
My stomach hurts, my head hurts, my foot hurts, until they're
grabbing it in pain.
You know that's the nail bitinganxiety part of this whole issue
of communication.
It makes you feel lucky if youdo have the ability to be like
hey, this happened and this ishow it made me feel.
Let's do this so I don't haveto experience that again.
Take away your ability toanalyze a scenario and remove
(10:14):
that which made you unhappySounds like you know.
That's a fundamental aspect ofbeing alive, but that is one of
the biggest fundamentals thatthey're missing is that ability
to communicate how they'refeeling, how someone makes them
feel, how some sound, and Ithink that, again, that was the
point of the play project andsome of the therapies and stuff
is, you're trying to listenbetween the lines, if you will.
(10:35):
Yes, because that is the onlyplace that you actually learn
anything, absolutely.
Shannon Chamberlin (10:41):
I was telling a story a couple
episodes ago about how welearned about his being
mistreated while he was here ona so-called vacation with the
grandparents, and how it cameout weeks and weeks later, in
between the lines of chatter outat the fire pit, and it was
just piecing it all together,one little piece here, one
little piece there, andeventually we figured out that
(11:02):
he had been places he shouldn'thave been.
He had you know.
It just makes me think of, like, when you watch crime shows and
stuff, they have one area ofinvestigation that's called
discovery, and that's basicallywhat we're constantly in is
discovery.
And then you got to share thatinformation with people who have
the power to influence them,like teachers and stuff, and
then they don't want to acceptit and it's really maddening,
(11:24):
because a lot of work and energygoes into discovery.
Jason (11:27):
And then you discover that not everybody is going to
be on board.
Either they are a productiveinfluence or they are
anti-productive, and that's partof the sad reality that we deal
with is that sometimes you justhave to cut people out and
accept them for who they are.
If they're going to lie to youabout what they feed your child,
where they take your child, andyou allow that, you're
basically stacking the deckagainst yourself.
Unfortunately, it may be easierfor you to go along, to get
(11:50):
along today, but eventuallyletting them get around these
types of people are going tocause big problems.
So you have to be strong.
It doesn't matter if it's agrandma or grandpa, If they're
lying to you and they're nottaking it serious.
You know, when we say, hey, wedon't do sugars, we don't do
dyes, we don't do gluten, andthey think, well, it's OK
because you're with grandpa orit's OK because you're with
grandma, to be our little secret, our little treat.
(12:12):
You know that's such a lack ofrespect and unfortunately, in
Jacob's situation he's hadplenty of that.
He has a grandma that stillacts like he is brain dead.
A few days ago asked me, rightin front of him, what he wants
for his birthday Right in frontof him.
I said he's standing right nextto you.
Why don't you ask himno-transcript?
And unfortunately that can onlybe bad.
(12:32):
You know there's a neglect thatcomes with that that is very
confusing to him and can be very, very anti-productive.
So you have to be very strongand never stop advocating for
your child.
Shannon Chamberlin (12:43):
Probably of people you'll let around your
son and let influence your son,because obviously anyone who
interacts with him is going toinfluence him in one way or the
other.
Before I came around, what wassingle slash dating life like
(13:04):
for you when you were just asingle father dealing with this
newly diagnosed autism?
Jason (13:10):
I think the biggest thing about the short answer to that
is it was almost non-existent.
Jake has always required a lotfrom me since he was, you know,
especially probably, I would say, five, six years old.
You know that really, reallykicked in when you have a child
that has special needs.
I'm like 30 years old now.
I mean women my age, you knowthey're thinking I need to find
somebody to settle down with.
(13:30):
I'm 30 years old.
You know what I mean If you'resingle at 30 years old or in
your late twenties, you know.
I mean it's kind of how theythink.
Anyway, right, you know, and itdon't matter how old you are,
it's like is this a potentialmate?
I mean, we do usuallyconsciously decide I'm going to
let this person in emotionally,I'm going to let my guard down
and, you know, let this personinto my heart Well, their life.
I don't want to be a caretakerforever, I don't want a child
(13:50):
for 50 years.
So they end up, before they'reeven too far emotionally
invested in you, mentally, theyconnect the dots there and be
like OK, you know what Hell withthat, especially on bad days,
when they see this type ofbehavior.
And you know well, this is justnot normal for a six year old,
a seven year old, to be behavingthis way, behaving this way?
(14:15):
And what if he's going tobehave this way in 20, 30 years?
The unknown is enough to scarepeople away.
So I mean, you know, yeah, Iwent through a couple of
girlfriends that I think thatafter they understood that
they're always going to have toshare the seat with Jake, I
can't just leave him, okay, andtake you to Jamaica.
I am married to him first.
If you want to get in on thisrelationship, you have to come
in knowing that, and I thinkthat that sets the stage for a
(14:36):
lot of issues with parentsdealing with special needs on
any level.
There's a lot of us that arealone and a lot of issues come
along with being lonely.
You know the chemicaldependency I'm sure is off the
charts for parents of specialneeds anyway, much less being
the only one, and being lonelyand not have a part of your life
fulfilled because you are busybeing a mom and a dad and a
(14:59):
caretaker constantly to thischild, constantly putting out
fires.
A mate can see that and be likeI don't want to fight fires for
the rest of my life.
It's aggravating, there'snothing easy about it.
And then you have familymembers that come along after
you just put a fire out and theythrow gas on fires.
You know what I mean?
That's the issue.
You're going to have people inyour life that are going to go
(15:19):
with you and they're going to beon the same page as you and
they're going to help you keepfires out, or they're going to
set fires.
In my experience, that's allthere is to it.
It's a 24-7, 365.
And when you're single theprospect, you know, just staring
at that unemotionally, just inits pure naked rawness of this
is the reality and it's notgoing to change you start to
wonder if you're ever going tohave a relationship.
And I hit the jackpot with you.
(15:40):
I mean, you know your viewerscome on, unless you're new to
the podcast Did Jacob hit thegold mine having Shannon for a
mom, someone who is taking suchan interest and has been so
patient, and at times she's losther shit!
Don't let her fool you.
Yeah, but you know what?
She's not a runner, she's afighter and she is a soldier for
that boy and I am so gratefuland I love her so much because
(16:02):
she gave Jake a mom that hedeserved to have
Shannon Chamberlin (16:18):
Thank you.
wanted kidsI guess, number one.
I didn't really understand whatautism was.
I mean, I know that you saidhe'll be with you for the rest
of his life, but I didn't knowhim very well, and I didn't
really know what was expected ofkids.
And I think the biggest thingfor me, though, is that all my
life, I just am not willing toaccept certain things if it's
dismal.
I am a fighter.
I do try to make a difference.
I'm optimistic, so I guess, ifyou are looking for someone out
(16:40):
there to accept you and be yourteammate with your children, try
to find someone who's reallyoptimistic.
Give them a puzzle, or givethem something and watch them,
try to solve it, and if theygive up, walk away.
Jason (16:56):
Yeah, they like detective things.
That's probably for the besttoo, and that's kind of what you
did.
You know, even with diet youhave to do everything within
your power to try to stack thedeck a little bit in your favor,
you know.
So the idea of having a childthat has the potential to laugh
and have a great time one minuteand then the next minute put
(17:17):
his head through the wall, youmight not want to give him a six
pack of Pepsi.
I mean, obviously there's somuch that you have to look at
and you have to eliminatevariables that are in your
control.
And obviously diet is a bigpart of how we feel and you know
it would be very foolish tothink that it's not the same for
them.
Shannon Chamberlin (17:34):
Going back to that single and dating life
while you were telling thatstory.
I was wondering, because he wassix when I met him and I guess
what I was wondering is was itthat obvious to people that you
tried to date that this wasgoing to be a lifelong thing?
Or I mean, was his behavior atsuch a young age, back when he
(17:57):
was cute, cuddly and everyoneloved autism, was that really a
deterrent?
Was it so glaring and obviousat that time?
And that's what happened toanyone who thought about coming
in for a relationship.
They just knew.
Jason (18:12):
I think so.
I try to imagine how I wouldfeel.
You know, if I was single andI'm looking at, you know,
potential mates, it wouldn't betoo high on my priority to
select one that was going tohave, you know, a special needs
child that was never going todrive a car, go to college, get
married.
You know it's almost like youknow, let's just go ahead and
(18:33):
avoid that.
You know you avoid that whileyou have no emotions.
You know what I mean.
That's really interesting to me, because I didn't even really
know you know what I mean Like Ididn't even know that that was
the reality for a long time.
I mean, I never had these greatexpectations of him, but I also
(18:53):
never had limiting beliefs ofhim either you know and I just,
I just wanted to help him growand develop and get through life
the best that he could and Inever really understood that.
Like I mean to give everyone anexample of, I guess, the way
that I don't comprehend things.
We moved here in an emergencysituation and I was really
(19:15):
convinced for the first threeyears that we were not going to
stay here very long.
So I guess that's on me, youknow.
But no, I never, really, Inever gave it a thought of he
will never do any of thesethings.
I never said, oh I, one day Ihope that he does.
I just I don't know, you know, Ijust thought I don't know.
(19:35):
I guess it's that live and letlive, and I never really thought
of the autism or the Jacob as amake or break it deal.
You know, I just he comes withthe kit.
I believe I met my soulmate andthis is what's going on.
It's a really interestingprospect for me to consider that
people think differently, youknow.
I think in your situation you know when it comes to you.
(19:58):
You just couldn't help it.
You know, you, all you outthere listening to this, She
loves puzzles.
She's very brilliant.
She runs categories on Jeopardy.
I mean, she's just.
She is a brilliant, brilliant,beautiful nerd.
Anything to do with bugs, trees, nature.
She's amazing.
She's amazing and that's JacobBugs, trees, nature, yeah yeah,
fits right into the family, youknow, but we really really got
(20:18):
lucky.
For me to be able to snagShannon we've been together now
for almost 20 years was amiracle.
I mean, something had to turnout right.
But yes, back in those daysbefore Jacob hit puberty, jacob
was just a very, very smiley,happily laughy.
He was easy.
Those actually were the easyyears.
Shannon Chamberlin (20:36):
I think that's why it surprised me so
much that that was a deterrent.
Jason (20:39):
Yeah, you know, that's the thing is so many people,
when they know there's specialneeds involved, that's red flag
run like hell and that's the wayit is.
I always was uncomfortable withpeople telling me that I was a
hey, you're such a great dad,you're doing such a good job
with your son.
And I always felt a littleweird when I would hear that
like you were congratulating mebecause I was breathing.
(21:02):
The idea of not being anattentive father would never
cross my mind, but apparentlythat crosses a lot of people's
minds.
To give up, to run from this,for whatever the reasons may be,
but it was inconceivable to meto not be the best parent that I
could possibly be to my son.
That's my son.
I made him.
He is my flesh and blood.
(21:22):
Everybody's got to make theirown decisions, but for me, you
might as well congratulate me.
Hey, you did such a great jobnot driving your car up a cliff
today.
Congratulations, I'm so proudof you.
Shannon Chamberlin (21:34):
I do remember we were at some kind of
a gathering many years ago andI think two people who know you
I don't know, they might havebeen family, maybe on your mom's
side, or something, I don'tknow, but I know two people came
up to me because you weresomewhere else in the area and
they said oh well, tell him, Iam so proud of him, the way he's
being a dad, you know, to Jacobor whatever.
(21:56):
And I told you.
I was like okay, these peoplesay they're proud of you for
being his dad.
Jason (22:03):
And I know, yeah, what else am I supposed to?
Shannon Chamberlin (22:05):
Yeah, right, and you were really weirded out
and offended by that, and Idon't blame you at all.
So, to wrap this up, you guys,I've got two more questions and,
husband, I'm just going to askyou these at the same time, and
you can just tell the story,okay?
Yes, okay, wife Tell myquestions wife, I would like to
have you discuss how, in theearly days, you were able to
(22:26):
help him hone his ability totalk what little bit he could,
and I know you have a littleshopping cart story that I would
like you to share as well.
Jason (22:35):
Let's do the shopping cart first.
So Jacob decided he had to peeand we were at the store in
front of the deli and he standsup in the shopping cart and pees
like a big make, a wishfountain, right there in front
of the deli.
So that's just.
You know.
I think he was probably four orfive.
You know one of many, manyexamples that he's not going to
(22:56):
make decisions based on what issocially acceptable.
Yeah, you got to be preparedfor that.
So they're pure, pure,unadulterated nature.
Here they come.
You know they don't care whatthat old lady is thinking or
what that young child may see.
It's all coming out and it'stime to pee.
Pee right where we're at.
You know, fortunately,something clicked in his head
and we understand.
It makes more sense to be like.
(23:17):
Daddy I gotta go pee pee, andthen we go pee pee, you know.
But you know, yeah, there was atime when he thought, well,
this looks like a good spot, youknow, there's that Now.
The other thing that I wasgoing to talk about was learning
words.
Learning words, OK, so his.
When it comes to the speechdelay, it might be easier to
(23:38):
prolong the sounds that make upa word.
Nothing does that better thanmusic, because it drags out the
syllables and it slows them downin space and time so that they
can be formed.
My son's first words were toinfinity and beyond.
Shannon Chamberlin (23:50):
How did he really say it?
Jason (23:52):
To Indigity, hang on Everything we.
His nickname was Diggy when hewas I don't know for the,
certainly for the first 12 yearsof his life, because he would
say digga as a substitute forsyllables that he couldn't
pronounce.
So, for example, you might saymy car is purple, but if he has
trouble saying car, he'll belike Indigity purple.
(24:12):
And then when he would get veryexcited, he would stem, he
would jump up and down, flap hisarms and go diggity, diggity,
diggity, diggity, diggity,diggity, diggity, diggity,
diggity, diggity, diggity,diggity, diggity, diggity,
diggity, diggity, digg.
There, that's a clue and youuse it.
You use everything you can toestablish the deepest forms of
(24:38):
communication that you can.
Perfect example right here.
I was never going to send Jacobto school and he was going to
learn how to type.
Never going to happen in ahundred years.
That was not going to happen.
But his interest in songs andmovies he taught himself how to
type.
He can use a keyboard withoutlooking at it at six and seven
years old because he taughthimself how to read.
(24:59):
He taught himself how to typebecause of his interest in Toy
Story, in Shrek, in Barney, whenhe was a kid.
He wanted to access them and inorder to do so, he had to type
them.
He had to learn how to spellthem.
He typed them into YouTube.
Youtube was the biggest toolfor him to develop his sense of
comprehending what he wasreading.
(25:20):
He has had the ability to readand to spell a lot longer than
he's had the ability to speakthe words that he's typing, so
it was actually a keyboard andYouTube that facilitated his
advancement in that area forsure.
Shannon Chamberlin (25:35):
And his motivation to look all this
stuff up was actually the cutelittle songs that are in all the
shows and movies.
Jason (25:43):
Exactly.
Shannon Chamberlin (25:44):
Did you guys sing together or anything like
that?
Jason (25:47):
We always sung together always and we still do.
It's just something that we'vealways done and I think for him
it's a place that feels real,real good, and for me, I love
singing goofy songs with Jakeand I know that it's very good
for him to work out and exercisehis speech, and it's the only
way to do that without justlooking at him and be like use
your mouth use your words.
Shannon Chamberlin (26:25):
Singing songs with him is therapy, to
enunciate certain words thatused to be digga, digga, digga
in a song, and if you guys everwant to check some of this out,
it'll pull at your heartstrings.
Fair warning.
But you can check out myhusband's YouTube channel.
There's a lot of differentstuff on there.
We've done comedy skits and heplays music and all this.
But we have a few videos ofJacob and dad singing songs from
(26:50):
Jacob's favorite movies andthey're very touching and you
can really from Jacob's favoritemovies and they're very
touching and you can reallywatch Jacob kind of begin to
blossom through each song.
Jason (26:58):
To be announced.
I think I'm going to start adifferent one just for that.
Shannon Chamberlin (27:01):
He just informed me that he is thinking
of just starting a new YouTubechannel just for Jacob and Dad,
because there's just so muchentertainment on the regular
channel but the current channelis Burnt From Birth.
So if you just type your at andthen burnt like toast from
birth, that's the channel youcan go and see it on, and I
(27:21):
think I've posted a little snipof one of the videos on my
Facebook as well.
But it really does help and itreally does bring Jacob back to
center.
You know, you hear from theseso-called experts that these
kids have no emotion, noattachment, they have no sense
of anything actually human andthat is so not true.
(27:42):
You can see it.
If your kid has an attachment toanything, like our kid has an
attachment to movies and showsand songs.
It's really the memory that isformed from performing those
things with his dad.
I mean, he loves the movie andhe loves the song, but his dad
makes him love it more.
(28:03):
It's a feeling, it's like whenyou remember being a kid and
going to grandma's house and shehad Christmas cookies cooking
or whatever it was.
There's a scent, a sound, asight, and there's all these
things that pile up together inyour heart and they just warm
your heart and you feel like youjust got a big hug.
Well, that's what Jacob lookslike every time his dad engages
in song with him, and they'vealways done it that way.
(28:26):
So that is the main.
Just bring him back to centeractivity that they have, and I
don't have that with him.
You know, that's just somethingbetween them and I think it's
really, really awesome.
My thing is more of a like, acaress, a physical hug and a
touch and a.
You know, being a mommy, that'sour bonding thing.
But you've never seen a kid sohappy as you see Jacob when he's
(28:48):
singing songs with his dad.
It's really amazing.
So hopefully you guys havesomething like that for your kid
.
Jason (28:53):
Yes, and I want to add to that by saying that it's
important for us to take care ofour mental health.
It's a very challenging issuefor so many of us.
We have to sometimes dig extradeep to find out what we're
grateful for.
Shannon Chamberlin (29:05):
When.
Jason (29:06):
I was taking Jake to Easter Seals for therapy.
He was getting occupationaltherapy and speech therapy and
things like that.
You know you're on your waythere and you're thinking, hmm,
my five-year-old is going intotherapy to learn how to
pronounce a two-syllable word.
You know that's what they'regoing to work on.
Or thread a rope through largebeads Okay, fine, motor skills
are very challenging to them.
(29:27):
You know it can be very easy tobe like you know, gosh, this
just kind of sucks.
I feel bad that this is wherewe're at.
We're five, six years old.
We don't know how to zip azipper, we don't know how to
button a button, but every timeI was exiting and I would see
children with multi disabilities, children who couldn't walk,
children who couldn't doanything physical that Jacob was
(29:49):
able to do, how could I notfeel so grateful, even if it
takes that, it's important forus to realize and to acknowledge
what we have, because some daysyou're just going to feel like
you don't have anything at alland it's important for you to
look around and be like.
You know I can get through this.
If they've got to do everythingI got to do today, plus, they
have to help their child go tothe toilet.
(30:09):
At least I don't have to dothat.
Some people have to help theirchild go to the toilet, but
their child may speak veryintelligently about their
emotions.
We all have our different setsof challenges, so it's important
to acknowledge what we'regrateful for to help us maintain
what little sanity we sometimeshave left.
Shannon Chamberlin (30:26):
Absolutely, and especially at this time of
year.
I know that here in the Statesit's winter, lack of sun, colder
, very gray outside.
All of that gives you theseasonal affective disorder, on
top of all of the stuff that youdeal with as a parent, because
your child is dealing with allof this stuff that they have and
it all comes out on you right.
(30:46):
This is a time when we thinkback to maybe how life was in
the past.
There was a time, perhaps, whenmost of us felt that holidays
were for family and that wecould rely on our family and
that our family loved our child.
And it was almost that feelingof a village when everyone got
together for the holidays.
You didn't have to worry aboutyour kid running around and
(31:08):
doing something to someone or tothemselves or whatever you know
.
We used to think, oh, this isgreat, I love when family's
around, everyone's safe,everyone's happy.
And then the cuteness wears offof the autism because the child
gets older, bigger and morescary.
And now, all of a sudden,holidays suck because we're
alone, we can't rely on ourfamily, we don't trust our
(31:30):
family around our kid, we don'tfeel safe and it makes holidays
that much harder.
Last episode I kind of rattledoff all my stuff that I was
grateful for, but I do have one.
One more piece of life that Iam currently grateful for.
It, of course, involves alittle story.
So the story starts backprobably around last spring or
(31:51):
summer.
I put a hand towel that washanging in the bathroom and had
fallen on the floor.
I used it to clean up a mess onthe floor and then I threw it
in the dirty towel basket that'sin the bathroom.
Not my arrangement.
I'm just following the way thehouse is set up by the people
who set it up, because I am intheir house, they're not in mine
.
The towel's dirty, that's whereit goes.
I come back in the bathroomprobably an hour later and I see
(32:19):
that same towel had been pickedup out of the basket and hung
back on the hook to be used as ahand towel.
There's a good chance that mykid did this, because he
understands that there was atowel there this morning.
It looked like it was clean,and I never know where he's
going to source the items thathe needs, so there's always a
little bit of a worry there.
I could go on with a bunch ofdifferent stories about this,
(32:40):
but I instantly was a littlefreaked out because what if it
was him?
He just reached in there.
That thing had been used toclean around the base of the
toilet.
I mean, I don't want himdigging in there and picking it
up and using it to dry his hands.
Obviously I don't want anybodydrying their hands with that
towel.
It's in the dirty basket.
So I have to go around the houseand start asking who did this?
Did somebody take the towel outand put it back on the hook?
(33:02):
And, as a matter of fact, yes,I found out somebody did, and it
was not my child, it was afull-grown man.
His grandfather actually pickedup a towel out of the filthy
basket and put it back up on thehook.
Hey, I'm not concerned formyself.
I would know if a towel wasdirty as soon as I touched it,
and most of us in this housewould.
(33:23):
But I'm very concerned becausemy child loves to play in water
and this is where he goes.
And now you just put the toileton my child's mouth.
What the fuck?
So that became a big learningpoint for the grandfather.
I made a big deal of it.
I showed him exactly where thattowel had been used and exactly
(33:44):
what my son does with his hands.
When he washes his face anddries his hands, he then rubs
everything all over himself.
So the grandfather realized atthat point and he actually
admitted that was wrong of me.
That was stupid of me.
I have plenty of clean towels.
That was the wrong thing to do.
I understand.
I won't do that anymore.
So great, fantastic.
(34:05):
I'm glad we could have ateachable moment, old man.
So that's the beginning of thestory.
Now fast forward to last week.
I was giving Jacob a bath.
I had just gotten done.
I was gathering all of theitems from the bathroom and
distributing them to theirrightful places throughout the
house and as I was walking outwith my hands full, I noticed
that there was a dry washclothon the floor in front of the
(34:29):
linen closet.
Here's a little side note onthis linen closet.
It's got stuff on the topshelves that has been there for
probably 10 or 15 years and itactually has carpet in the
bottom of it.
That was there before thisfamily moved here.
They moved here about 35 yearsago.
Okay, it's also a little toonarrow to be an actual regular
(34:50):
closet and you can't even fitthe vacuum cleaner head in there
to clean it.
Keep that in mind.
So I found this washcloth and Ithere was no way I could pick it
up, and I didn't want to try tokick it down the hall and down
the stairs and around the houseuntil I got it down to the
laundry area.
I just said, well, I'll pick itup next time.
And then, of course, next time.
My hands were full again and Iwas walking by.
I said, damn man, I got to pickthat up because that incident
(35:12):
is always running through myhead.
I don't trust that old man andI don't trust him to do the
right thing.
If he sees that rag, I don'ttrust him to put it in the dirty
clothes.
I don't believe that he will.
So it's.
I feel it's my responsibility topick up the stupid washcloth.
It looks like it's clean too,and that makes it even more
dangerous.
It's almost completely foldedand it's dry, and I think that's
(35:35):
just enough for Tweedledum toscrew up my whole program of
cleanliness and wellness andsafety with my son.
So I was kicking myself likeshit.
I got to pick this up.
I got to pick this up.
Well, then I got busy wherever Iended up in the house, and this
just went on for the entire day.
I wake up in the morning andthe damn thing is still there.
(35:56):
Now it's rolled up underneaththe closet door, as the closet
door had been shut by somebody.
Usually it's the grandfatherthat likes to shut that door and
not worry about what's on thefloor.
So I was like, okay, here Ihave to do this.
But Jacob was awake.
He had just come to me at thebathroom door and I needed to
get his medicine.
So again, I didn't pick up thewashcloth.
(36:16):
I don't like touching thingsthat are dirty if I have to do
something clean with my handsright now.
So my fault, I didn't do it.
Yet I did make mental note,though like, okay, that is in a
different spot.
I got to keep my eye out justin case someone else sees that
before I come back up here topick it up.
Lo and behold, I came up thereto pick it up and it was gone.
So I was like, okay, let'scheck the dirty basket in the
(36:39):
bathroom.
Nope, it was not there, and Iknow because it's an off color
and it doesn't match the rest ofthe stuff.
And it wasn't there.
So like, okay, great, let me godown to the basement and the
laundry area and see if it'sthere.
(36:59):
No, it's not there.
So I go up to the linen closetthat is still closed but there's
no rag on the floor and I gothrough the little container
that holds the washcloths.
It's not in the top of thecontainer.
So I picked up the whole stackof clean washcloths and on the
bottom, not even folded, it'spicked up exactly the way.
I remember it laying on thefloor and it is set down in the
bottom of this plastic bin withall the clean washcloths on top.
(37:21):
Cuss words up and down freakedme out.
I couldn't believe it.
I was already going through athing of saying to my spouse hey
, we need to stop using thesetowels because they smell.
He washes them and they juststink, like a dirty dog, or like
a dirty vacuum, to be morespecific, and I couldn't figure
(37:43):
out why.
And then, just two days beforethis incident, I got a peek
inside of his room, because heleft his door open and sent my
spouse in there for something,and I saw that right next to
this basket of clean towels thathe collected from the dryer and
parked in his room so he couldgo sit and sleep in front of the
TV.
There is a vacuum two feet fromit and he doesn't vacuum the
(38:06):
house.
Just wanted to give that asecond to sink in.
So I was like, yeah, well, Ihave super sensitive skin.
I don't think it's safe for meto use these towels and
washcloths.
I like them because they'reright there next to the bathroom
and I don't have to keepremembering to bring one of mine
from downstairs every time Ineed to go in the bathroom.
But you know, the conveniencejust isn't worth it if this is
(38:29):
causing my skin issues.
So I want to stop using thesetowels.
And then, son of a bitch, andthen this happens.
So I brought it to my spouse'sattention and I told him exactly
what happened and he's justspeechless, you know.
So, yeah, so I made the rule weare no longer using house
towels and wash rags.
My spouse is grossed out enoughby this that he actually is
(38:49):
adhering to this new rule.
Normally he's just kind of likewhatever and just does whatever
he wants, but he is evengrossed out by this.
So I am grateful that I noticedit.
I'm grateful that I alreadyknew the pattern that probably
existed within the old man to dothat terrible thing to us, and
I'm glad that I noticed that itall happened and that my spouse
(39:10):
is on board to support theboycott of the towels in the
house now.
So anyway, I guess that's.
I'm grasping at straws here forgratitude this week, but that
is my story of gratitude.
I'm very grateful that I was onto him and that I knew it was
going to happen and that Iinvestigated it and that those
dirty things did not touch myson's mouth or anywhere else on
(39:31):
his body.
It's just really disappointingwhen you have to babysit.
Every single thing that goes onaround your own life.
My son would never know.
I mean, anyway, whoo yeah,there's my story of family never
letting us down.
How about you?
I'm hoping you have a story youcan turn into a grateful
(39:52):
experience as well.
You hang in there.
(49:05):
You're a superhero.
Hello and welcome to the Parenting Severe
Autism podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
Today we're wrapping up parttwo of the interview with Dad.
And remember, if you'reinterested in supporting the
podcast in any way, you canclick the little support podcast
button on your podcast playeror you can visit my hosting
(00:39):
website, psa.
buzzsprout.
com.
I've still got merchandiseavailable as well.
You can just follow all of mylinks from there and if you had
any questions, comments orconcerns, you are welcome to
email me at contact.
parentingsevereautism@ gmailcom.
The next couple of questionsare a little more heavy and
(00:59):
maybe a little more triggeringfor people, so I just wanted to
say that first.
But my question is about thevaccines.
How do you feel about vaccinesand the possibility of them
being a catalyst to conditionsthat may already exist in order
to actually create autism?
Jason (01:20):
To awaken a sleeping giant?
Yes, Okay.
Well, I've thought about that.
Sometimes I joke and say youknow, we're all on the spectrum,
it's just that Jake's higherfunctioning you know, because
there's definitely days when Idon't feel like I'm functioning
too well at all and I don'tcommunicate, you know very well,
and to be able to relateemotionally or mentally to
another human being seems to bea stretch, you know, sometimes I
(01:48):
don't even feel like I can talk, right, you know.
So I mean, we just talked aboutautism, didn't we?
But I do have family membersthat don't seem to have the
ability to form genuinerelationships on so many
different levels with otherhuman beings.
I see this.
I see extreme narcissism.
Autism, it's a very selfishthing.
I mean, no autistic kid reallyfeels bad that he has autism and
they can unleash hell on you,you know.
And it's not like a person whocomes home from work and says I
(02:11):
feel bad because my bipolardisorder really showed itself
today at work.
Yeah, not going to happen here,you know.
But facts are facts.
When we look at the vaccine, itused to be administered measles
, mumps, rubella in threeindividual doses.
When they combined that vaccineinto a single cocktail, it
(02:31):
required a different type ofpreservative, which is basically
a mercury-based preservative,and the epidemic of autism soon
followed.
Let's talk about our parents'generation.
There was a handful of shotsthat they had to take, you know,
during grade school, highschool, all that.
We're talking about a 300%increase in vaccines over the
spread of a generation and ahalf, by the pharmaceutical
(02:52):
companies themselves.
They knew that this stuff couldcause cognitive disorders.
They knew, before they sent itoff to be consumed, that measles
, mumps, rubella vaccine isgoing to cause cognitive issues
(03:15):
in children.
And the woman that was incharge of the whole deal not
only did not lose her job, shewas granted a very large
position at the FDA, so sheactually got a raise, she
actually elevated her status byapproving this poison.
And the facts are the facts.
I mean, if you want to look upand see how many children out of
100 children were diagnosedwith autism in the 90s, compared
to the 2000 to 2010.
(03:37):
And then we have to look at seewhat's changed.
What really changed?
Was it diet?
No, was it that our waterchanged drastically?
What changed?
And the answer is unequivocallythe vaccines.
So, yes, I do believe thatvaccines are to blame for the
epidemic.
Shannon Chamberlin (03:55):
We've had 24 years of him being alive and 21
of them have been diagnosedwith autism.
During all of these years thatwe've been raising him and
dealing with everything as itcomes up and over and over again
, and then the new things on topof that.
And looking outward to all ofthe extended family members.
The more time that goes by andthe more I see of extended
(04:15):
family members, the more I startto wonder this Do we think that
there are signs in other familymembers who are completely
functioning, they're well off,they're doing fine, they have no
diagnoses of any kind oflearning disability or any
developmental disability,everyone's fine.
But do we see things that maybeare tipping us off, that this
(04:38):
is kind of in the blood?
Jason (04:41):
I think that on some level it exists within us and it
is there.
I think that some people thatare diagnosed with autism today
they're able to get a level ofcompassion that they were not
going to get in the 80s andprior, when people hadn't heard
this.
It seems like in the past therewas just a hey, toughen up
attitude.
You know what I mean, and itwas survival of the fittest, and
(05:04):
if you fall behind, you getleft behind.
You know, there was a time whenpeople like Jacob would have
just been institutionalized,period.
They would have been labeledmentally retarded and they would
have been institutionalized forthe rest of their lives.
You know, now they're viewed alittle different and right.
Can you imagine if they weren't?
I mean, that would be a lot ofinstitutions to house all of
(05:26):
these.
You know what?
One out of 30, one out of 30,40 kids now being diagnosed.
Shannon Chamberlin (05:30):
Yeah, Thank you for your input on that.
Personally, I believe the sameof what you said that it may be
lying dormant in everybody weall have our peculiarities and
our particular things.
You know and I've mentioned thisin several episodes, that I get
it.
What bothers him and whatirritates him, what pisses him
off?
Hey, I feel that way too, I'm..
(05:51):
.
You know, I get that, I get it.
And like you said about whenyou took him to school that
first day, you were just gutwrenched about it about leaving
him there with all thesestrangers, and he didn't think
anything of it one way or theother.
Well, I was the same way when Iwas in preschool and
kindergarten.
I didn't give a shit where myparents were, I just wanted to
be where I was.
(06:12):
And so those little things Ilook into myself and I recognize
parts of what they call autismin Jacob, in me as a regular
functioning adult.
And then I look at your familymembers related to Jacob and I
think, wow, I think that maybethere is something just running
(06:33):
in the blood.
And I look at his maternal sideand I know that they're a
little screwed up too and I justthink that you know, like with.
Okay, so my family my dad hadthree daughters before he
married my mom.
He had three daughters withanother woman.
We all have Irish names butwe're completely different, but
at least two of us sound alikeon the phone and each one of
(06:56):
them had a defect.
And one main reason I used tosay it was a big reason I don't
want kids is because I didn'twant my kid to have a birth
defect.
My dad had a cleft palate.
One of my sisters is allegedlylike he, really really big, just
tall, big hands, you know, andjust just weird, you know.
So each one of us has.
(07:17):
I don't know what my problem is, but I know it's in there
somewhere.
My luck, I'm going to have ababy with big hands, my problem
is, but I know it's in theresomewhere.
My luck, I'm going to have ababy with big hands.
Yeah Well, my dad had a cleftpalate, so that was a big
problem for him growing up.
And you know, all of us havethings and I think that, like if
I would have had one, I mighthave had a really defective baby
(07:38):
, and I didn't want to put aperson through that and I didn't
want to have to go through itmyself.
So I think that, looking at thegenes involved in creating him
and his two half siblings, Ifeel that, you know, maybe there
is a little something that wasburied and maybe the vaccine is
was the catalyst, as youmentioned, because I do see
things that are weird in thesepeople that are related to him,
(08:02):
but not you, of course.
Jason (08:03):
Yeah, it's like insomnia, insomnia if you have it, it can
be a catalyst.
If you develop insomnia and youhave any underlining mental
issues, then insomnia can be acatalyst to bring out that OCD
or schizophrenia or somethinglike that.
And yeah, I mean there's plentyof mental instability, you know
(08:25):
in the whole the whole family.
I mean, it's like, you know Isometimes, you know I have to
fight tooth and claw, you know,to make it out of my own head,
my own space, and I feel thatprobably is one of the biggest
things me and Jake haven't come.
Shannon Chamberlin (08:43):
Yeah, I do try to remember that.
I see a lot of it, you know inhim where I'm just like oh dude,
I totally know how you feelright now, even though you can't
tell me, I see it, and that'snice, I think, when you're able
to kind of recognize faultswithin yourself that are just
part of you.
But when they're attached tosomeone with severe autism now,
they're glaringly obvious traitsthat you would normally think
nothing of and those traits weall share.
And when we can recognize themin people who can't communicate
(09:06):
them to us, I think it gives ussome common ground.
Jason (09:09):
That goes into the biggest thing about.
To me, the most challengingpart of this whole situation,
you know, is it is a blessing tobe able to express yourself.
You know it's a gift to be ableto say I feel angry because
this or that or the other thing.
The biggest fear that we have,parenting these sweet little
angels is they can't tell us.
(09:30):
They don't tell us.
We see how they feel, based onhow they're behaving, and that's
it.
How often is that accurate forourselves?
How often does that happen?
You know the fear of leavingthem with anybody.
If anything happens, they arenot going to tell you about it
when they get sick.
You have to try really, reallyhard.
You have to become a detectiveto figure out that their stomach
(09:52):
hurts because they're not goingto tell you.
My stomach hurts, my head hurts, my foot hurts, until they're
grabbing it in pain.
You know that's the nail bitinganxiety part of this whole issue
of communication.
It makes you feel lucky if youdo have the ability to be like
hey, this happened and this ishow it made me feel.
Let's do this so I don't haveto experience that again.
Take away your ability toanalyze a scenario and remove
(10:14):
that which made you unhappySounds like you know.
That's a fundamental aspect ofbeing alive, but that is one of
the biggest fundamentals thatthey're missing is that ability
to communicate how they'refeeling, how someone makes them
feel, how some sound, and Ithink that, again, that was the
point of the play project andsome of the therapies and stuff
is, you're trying to listenbetween the lines, if you will.
(10:35):
Yes, because that is the onlyplace that you actually learn
anything, absolutely.
Shannon Chamberlin (10:41):
I was telling a story a couple
episodes ago about how welearned about his being
mistreated while he was here ona so-called vacation with the
grandparents, and how it cameout weeks and weeks later, in
between the lines of chatter outat the fire pit, and it was
just piecing it all together,one little piece here, one
little piece there, andeventually we figured out that
(11:02):
he had been places he shouldn'thave been.
He had you know.
It just makes me think of, like, when you watch crime shows and
stuff, they have one area ofinvestigation that's called
discovery, and that's basicallywhat we're constantly in is
discovery.
And then you got to share thatinformation with people who have
the power to influence them,like teachers and stuff, and
then they don't want to acceptit and it's really maddening,
(11:24):
because a lot of work and energygoes into discovery.
Jason (11:27):
And then you discover that not everybody is going to
be on board.
Either they are a productiveinfluence or they are
anti-productive, and that's partof the sad reality that we deal
with is that sometimes you justhave to cut people out and
accept them for who they are.
If they're going to lie to youabout what they feed your child,
where they take your child, andyou allow that, you're
basically stacking the deckagainst yourself.
Unfortunately, it may be easierfor you to go along, to get
(11:50):
along today, but eventuallyletting them get around these
types of people are going tocause big problems.
So you have to be strong.
It doesn't matter if it's agrandma or grandpa, If they're
lying to you and they're nottaking it serious.
You know, when we say, hey, wedon't do sugars, we don't do
dyes, we don't do gluten, andthey think, well, it's OK
because you're with grandpa orit's OK because you're with
grandma, to be our little secret, our little treat.
(12:12):
You know that's such a lack ofrespect and unfortunately, in
Jacob's situation he's hadplenty of that.
He has a grandma that stillacts like he is brain dead.
A few days ago asked me, rightin front of him, what he wants
for his birthday Right in frontof him.
I said he's standing right nextto you.
Why don't you ask himno-transcript?
And unfortunately that can onlybe bad.
(12:32):
You know there's a neglect thatcomes with that that is very
confusing to him and can be very, very anti-productive.
So you have to be very strongand never stop advocating for
your child.
Shannon Chamberlin (12:43):
Probably of people you'll let around your
son and let influence your son,because obviously anyone who
interacts with him is going toinfluence him in one way or the
other.
Before I came around, what wassingle slash dating life like
(13:04):
for you when you were just asingle father dealing with this
newly diagnosed autism?
Jason (13:10):
I think the biggest thing about the short answer to that
is it was almost non-existent.
Jake has always required a lotfrom me since he was, you know,
especially probably, I would say, five, six years old.
You know that really, reallykicked in when you have a child
that has special needs.
I'm like 30 years old now.
I mean women my age, you knowthey're thinking I need to find
somebody to settle down with.
(13:30):
I'm 30 years old.
You know what I mean If you'resingle at 30 years old or in
your late twenties, you know.
I mean it's kind of how theythink.
Anyway, right, you know, and itdon't matter how old you are,
it's like is this a potentialmate?
I mean, we do usuallyconsciously decide I'm going to
let this person in emotionally,I'm going to let my guard down
and, you know, let this personinto my heart Well, their life.
I don't want to be a caretakerforever, I don't want a child
(13:50):
for 50 years.
So they end up, before they'reeven too far emotionally
invested in you, mentally, theyconnect the dots there and be
like OK, you know what Hell withthat, especially on bad days,
when they see this type ofbehavior.
And you know well, this is justnot normal for a six year old,
a seven year old, to be behavingthis way, behaving this way?
(14:15):
And what if he's going tobehave this way in 20, 30 years?
The unknown is enough to scarepeople away.
So I mean, you know, yeah, Iwent through a couple of
girlfriends that I think thatafter they understood that
they're always going to have toshare the seat with Jake, I
can't just leave him, okay, andtake you to Jamaica.
I am married to him first.
If you want to get in on thisrelationship, you have to come
in knowing that, and I thinkthat that sets the stage for a
(14:36):
lot of issues with parentsdealing with special needs on
any level.
There's a lot of us that arealone and a lot of issues come
along with being lonely.
You know the chemicaldependency I'm sure is off the
charts for parents of specialneeds anyway, much less being
the only one, and being lonelyand not have a part of your life
fulfilled because you are busybeing a mom and a dad and a
(14:59):
caretaker constantly to thischild, constantly putting out
fires.
A mate can see that and be likeI don't want to fight fires for
the rest of my life.
It's aggravating, there'snothing easy about it.
And then you have familymembers that come along after
you just put a fire out and theythrow gas on fires.
You know what I mean?
That's the issue.
You're going to have people inyour life that are going to go
(15:19):
with you and they're going to beon the same page as you and
they're going to help you keepfires out, or they're going to
set fires.
In my experience, that's allthere is to it.
It's a 24-7, 365.
And when you're single theprospect, you know, just staring
at that unemotionally, just inits pure naked rawness of this
is the reality and it's notgoing to change you start to
wonder if you're ever going tohave a relationship.
And I hit the jackpot with you.
(15:40):
I mean, you know your viewerscome on, unless you're new to
the podcast Did Jacob hit thegold mine having Shannon for a
mom, someone who is taking suchan interest and has been so
patient, and at times she's losther shit!
Don't let her fool you.
Yeah, but you know what?
She's not a runner, she's afighter and she is a soldier for
that boy and I am so gratefuland I love her so much because
(16:02):
she gave Jake a mom that hedeserved to have
Shannon Chamberlin (16:18):
Thank you.
wanted kidsI guess, number one.
I didn't really understand whatautism was.
I mean, I know that you saidhe'll be with you for the rest
of his life, but I didn't knowhim very well, and I didn't
really know what was expected ofkids.
And I think the biggest thingfor me, though, is that all my
life, I just am not willing toaccept certain things if it's
dismal.
I am a fighter.
I do try to make a difference.
I'm optimistic, so I guess, ifyou are looking for someone out
(16:40):
there to accept you and be yourteammate with your children, try
to find someone who's reallyoptimistic.
Give them a puzzle, or givethem something and watch them,
try to solve it, and if theygive up, walk away.
Jason (16:56):
Yeah, they like detective things.
That's probably for the besttoo, and that's kind of what you
did.
You know, even with diet youhave to do everything within
your power to try to stack thedeck a little bit in your favor,
you know.
So the idea of having a childthat has the potential to laugh
and have a great time one minuteand then the next minute put
(17:17):
his head through the wall, youmight not want to give him a six
pack of Pepsi.
I mean, obviously there's somuch that you have to look at
and you have to eliminatevariables that are in your
control.
And obviously diet is a bigpart of how we feel and you know
it would be very foolish tothink that it's not the same for
them.
Shannon Chamberlin (17:34):
Going back to that single and dating life
while you were telling thatstory.
I was wondering, because he wassix when I met him and I guess
what I was wondering is was itthat obvious to people that you
tried to date that this wasgoing to be a lifelong thing?
Or I mean, was his behavior atsuch a young age, back when he
(17:57):
was cute, cuddly and everyoneloved autism, was that really a
deterrent?
Was it so glaring and obviousat that time?
And that's what happened toanyone who thought about coming
in for a relationship.
They just knew.
Jason (18:12):
I think so.
I try to imagine how I wouldfeel.
You know, if I was single andI'm looking at, you know,
potential mates, it wouldn't betoo high on my priority to
select one that was going tohave, you know, a special needs
child that was never going todrive a car, go to college, get
married.
You know it's almost like youknow, let's just go ahead and
(18:33):
avoid that.
You know you avoid that whileyou have no emotions.
You know what I mean.
That's really interesting to me, because I didn't even really
know you know what I mean Like Ididn't even know that that was
the reality for a long time.
I mean, I never had these greatexpectations of him, but I also
(18:53):
never had limiting beliefs ofhim either you know and I just,
I just wanted to help him growand develop and get through life
the best that he could and Inever really understood that.
Like I mean to give everyone anexample of, I guess, the way
that I don't comprehend things.
We moved here in an emergencysituation and I was really
(19:15):
convinced for the first threeyears that we were not going to
stay here very long.
So I guess that's on me, youknow.
But no, I never, really, Inever gave it a thought of he
will never do any of thesethings.
I never said, oh I, one day Ihope that he does.
I just I don't know, you know, Ijust thought I don't know.
(19:35):
I guess it's that live and letlive, and I never really thought
of the autism or the Jacob as amake or break it deal.
You know, I just he comes withthe kit.
I believe I met my soulmate andthis is what's going on.
It's a really interestingprospect for me to consider that
people think differently, youknow.
I think in your situation you know when it comes to you.
(19:58):
You just couldn't help it.
You know, you, all you outthere listening to this, She
loves puzzles.
She's very brilliant.
She runs categories on Jeopardy.
I mean, she's just.
She is a brilliant, brilliant,beautiful nerd.
Anything to do with bugs, trees, nature.
She's amazing.
She's amazing and that's JacobBugs, trees, nature, yeah yeah,
fits right into the family, youknow, but we really really got
(20:18):
lucky.
For me to be able to snagShannon we've been together now
for almost 20 years was amiracle.
I mean, something had to turnout right.
But yes, back in those daysbefore Jacob hit puberty, jacob
was just a very, very smiley,happily laughy.
He was easy.
Those actually were the easyyears.
Shannon Chamberlin (20:36):
I think that's why it surprised me so
much that that was a deterrent.
Jason (20:39):
Yeah, you know, that's the thing is so many people,
when they know there's specialneeds involved, that's red flag
run like hell and that's the wayit is.
I always was uncomfortable withpeople telling me that I was a
hey, you're such a great dad,you're doing such a good job
with your son.
And I always felt a littleweird when I would hear that
like you were congratulating mebecause I was breathing.
(21:02):
The idea of not being anattentive father would never
cross my mind, but apparentlythat crosses a lot of people's
minds.
To give up, to run from this,for whatever the reasons may be,
but it was inconceivable to meto not be the best parent that I
could possibly be to my son.
That's my son.
I made him.
He is my flesh and blood.
(21:22):
Everybody's got to make theirown decisions, but for me, you
might as well congratulate me.
Hey, you did such a great jobnot driving your car up a cliff
today.
Congratulations, I'm so proudof you.
Shannon Chamberlin (21:34):
I do remember we were at some kind of
a gathering many years ago andI think two people who know you
I don't know, they might havebeen family, maybe on your mom's
side, or something, I don'tknow, but I know two people came
up to me because you weresomewhere else in the area and
they said oh well, tell him, Iam so proud of him, the way he's
being a dad, you know, to Jacobor whatever.
(21:56):
And I told you.
I was like okay, these peoplesay they're proud of you for
being his dad.
Jason (22:03):
And I know, yeah, what else am I supposed to?
Shannon Chamberlin (22:05):
Yeah, right, and you were really weirded out
and offended by that, and Idon't blame you at all.
So, to wrap this up, you guys,I've got two more questions and,
husband, I'm just going to askyou these at the same time, and
you can just tell the story,okay?
Yes, okay, wife Tell myquestions wife, I would like to
have you discuss how, in theearly days, you were able to
(22:26):
help him hone his ability totalk what little bit he could,
and I know you have a littleshopping cart story that I would
like you to share as well.
Jason (22:35):
Let's do the shopping cart first.
So Jacob decided he had to peeand we were at the store in
front of the deli and he standsup in the shopping cart and pees
like a big make, a wishfountain, right there in front
of the deli.
So that's just.
You know.
I think he was probably four orfive.
You know one of many, manyexamples that he's not going to
(22:56):
make decisions based on what issocially acceptable.
Yeah, you got to be preparedfor that.
So they're pure, pure,unadulterated nature.
Here they come.
You know they don't care whatthat old lady is thinking or
what that young child may see.
It's all coming out and it'stime to pee.
Pee right where we're at.
You know, fortunately,something clicked in his head
and we understand.
It makes more sense to be like.
(23:17):
Daddy I gotta go pee pee, andthen we go pee pee, you know.
But you know, yeah, there was atime when he thought, well,
this looks like a good spot, youknow, there's that Now.
The other thing that I wasgoing to talk about was learning
words.
Learning words, OK, so his.
When it comes to the speechdelay, it might be easier to
(23:38):
prolong the sounds that make upa word.
Nothing does that better thanmusic, because it drags out the
syllables and it slows them downin space and time so that they
can be formed.
My son's first words were toinfinity and beyond.
Shannon Chamberlin (23:50):
How did he really say it?
Jason (23:52):
To Indigity, hang on Everything we.
His nickname was Diggy when hewas I don't know for the,
certainly for the first 12 yearsof his life, because he would
say digga as a substitute forsyllables that he couldn't
pronounce.
So, for example, you might saymy car is purple, but if he has
trouble saying car, he'll belike Indigity purple.
(24:12):
And then when he would get veryexcited, he would stem, he
would jump up and down, flap hisarms and go diggity, diggity,
diggity, diggity, diggity,diggity, diggity, diggity,
diggity, diggity, diggity,diggity, diggity, diggity,
diggity, diggity, digg.
There, that's a clue and youuse it.
You use everything you can toestablish the deepest forms of
(24:38):
communication that you can.
Perfect example right here.
I was never going to send Jacobto school and he was going to
learn how to type.
Never going to happen in ahundred years.
That was not going to happen.
But his interest in songs andmovies he taught himself how to
type.
He can use a keyboard withoutlooking at it at six and seven
years old because he taughthimself how to read.
(24:59):
He taught himself how to typebecause of his interest in Toy
Story, in Shrek, in Barney, whenhe was a kid.
He wanted to access them and inorder to do so, he had to type
them.
He had to learn how to spellthem.
He typed them into YouTube.
Youtube was the biggest toolfor him to develop his sense of
comprehending what he wasreading.
(25:20):
He has had the ability to readand to spell a lot longer than
he's had the ability to speakthe words that he's typing, so
it was actually a keyboard andYouTube that facilitated his
advancement in that area forsure.
Shannon Chamberlin (25:35):
And his motivation to look all this
stuff up was actually the cutelittle songs that are in all the
shows and movies.
Jason (25:43):
Exactly.
Shannon Chamberlin (25:44):
Did you guys sing together or anything like
that?
Jason (25:47):
We always sung together always and we still do.
It's just something that we'vealways done and I think for him
it's a place that feels real,real good, and for me, I love
singing goofy songs with Jakeand I know that it's very good
for him to work out and exercisehis speech, and it's the only
way to do that without justlooking at him and be like use
your mouth use your words.
Shannon Chamberlin (26:25):
Singing songs with him is therapy, to
enunciate certain words thatused to be digga, digga, digga
in a song, and if you guys everwant to check some of this out,
it'll pull at your heartstrings.
Fair warning.
But you can check out myhusband's YouTube channel.
There's a lot of differentstuff on there.
We've done comedy skits and heplays music and all this.
But we have a few videos ofJacob and dad singing songs from
(26:50):
Jacob's favorite movies andthey're very touching and you
can really from Jacob's favoritemovies and they're very
touching and you can reallywatch Jacob kind of begin to
blossom through each song.
Jason (26:58):
To be announced.
I think I'm going to start adifferent one just for that.
Shannon Chamberlin (27:01):
He just informed me that he is thinking
of just starting a new YouTubechannel just for Jacob and Dad,
because there's just so muchentertainment on the regular
channel but the current channelis Burnt From Birth.
So if you just type your at andthen burnt like toast from
birth, that's the channel youcan go and see it on, and I
(27:21):
think I've posted a little snipof one of the videos on my
Facebook as well.
But it really does help and itreally does bring Jacob back to
center.
You know, you hear from theseso-called experts that these
kids have no emotion, noattachment, they have no sense
of anything actually human andthat is so not true.
(27:42):
You can see it.
If your kid has an attachment toanything, like our kid has an
attachment to movies and showsand songs.
It's really the memory that isformed from performing those
things with his dad.
I mean, he loves the movie andhe loves the song, but his dad
makes him love it more.
(28:03):
It's a feeling, it's like whenyou remember being a kid and
going to grandma's house and shehad Christmas cookies cooking
or whatever it was.
There's a scent, a sound, asight, and there's all these
things that pile up together inyour heart and they just warm
your heart and you feel like youjust got a big hug.
Well, that's what Jacob lookslike every time his dad engages
in song with him, and they'vealways done it that way.
(28:26):
So that is the main.
Just bring him back to centeractivity that they have, and I
don't have that with him.
You know, that's just somethingbetween them and I think it's
really, really awesome.
My thing is more of a like, acaress, a physical hug and a
touch and a.
You know, being a mommy, that'sour bonding thing.
But you've never seen a kid sohappy as you see Jacob when he's
(28:48):
singing songs with his dad.
It's really amazing.
So hopefully you guys havesomething like that for your kid
.
Jason (28:53):
Yes, and I want to add to that by saying that it's
important for us to take care ofour mental health.
It's a very challenging issuefor so many of us.
We have to sometimes dig extradeep to find out what we're
grateful for.
Shannon Chamberlin (29:05):
When.
Jason (29:06):
I was taking Jake to Easter Seals for therapy.
He was getting occupationaltherapy and speech therapy and
things like that.
You know you're on your waythere and you're thinking, hmm,
my five-year-old is going intotherapy to learn how to
pronounce a two-syllable word.
You know that's what they'regoing to work on.
Or thread a rope through largebeads Okay, fine, motor skills
are very challenging to them.
(29:27):
You know it can be very easy tobe like you know, gosh, this
just kind of sucks.
I feel bad that this is wherewe're at.
We're five, six years old.
We don't know how to zip azipper, we don't know how to
button a button, but every timeI was exiting and I would see
children with multi disabilities, children who couldn't walk,
children who couldn't doanything physical that Jacob was
(29:49):
able to do, how could I notfeel so grateful, even if it
takes that, it's important forus to realize and to acknowledge
what we have, because some daysyou're just going to feel like
you don't have anything at alland it's important for you to
look around and be like.
You know I can get through this.
If they've got to do everythingI got to do today, plus, they
have to help their child go tothe toilet.
(30:09):
At least I don't have to dothat.
Some people have to help theirchild go to the toilet, but
their child may speak veryintelligently about their
emotions.
We all have our different setsof challenges, so it's important
to acknowledge what we'regrateful for to help us maintain
what little sanity we sometimeshave left.
Shannon Chamberlin (30:26):
Absolutely, and especially at this time of
year.
I know that here in the Statesit's winter, lack of sun, colder
, very gray outside.
All of that gives you theseasonal affective disorder, on
top of all of the stuff that youdeal with as a parent, because
your child is dealing with allof this stuff that they have and
it all comes out on you right.
(30:46):
This is a time when we thinkback to maybe how life was in
the past.
There was a time, perhaps, whenmost of us felt that holidays
were for family and that wecould rely on our family and
that our family loved our child.
And it was almost that feelingof a village when everyone got
together for the holidays.
You didn't have to worry aboutyour kid running around and
(31:08):
doing something to someone or tothemselves or whatever you know
.
We used to think, oh, this isgreat, I love when family's
around, everyone's safe,everyone's happy.
And then the cuteness wears offof the autism because the child
gets older, bigger and morescary.
And now, all of a sudden,holidays suck because we're
alone, we can't rely on ourfamily, we don't trust our
(31:30):
family around our kid, we don'tfeel safe and it makes holidays
that much harder.
Last episode I kind of rattledoff all my stuff that I was
grateful for, but I do have one.
One more piece of life that Iam currently grateful for.
It, of course, involves alittle story.
So the story starts backprobably around last spring or
(31:51):
summer.
I put a hand towel that washanging in the bathroom and had
fallen on the floor.
I used it to clean up a mess onthe floor and then I threw it
in the dirty towel basket that'sin the bathroom.
Not my arrangement.
I'm just following the way thehouse is set up by the people
who set it up, because I am intheir house, they're not in mine
.
The towel's dirty, that's whereit goes.
I come back in the bathroomprobably an hour later and I see
(32:19):
that same towel had been pickedup out of the basket and hung
back on the hook to be used as ahand towel.
There's a good chance that mykid did this, because he
understands that there was atowel there this morning.
It looked like it was clean,and I never know where he's
going to source the items thathe needs, so there's always a
little bit of a worry there.
I could go on with a bunch ofdifferent stories about this,
(32:40):
but I instantly was a littlefreaked out because what if it
was him?
He just reached in there.
That thing had been used toclean around the base of the
toilet.
I mean, I don't want himdigging in there and picking it
up and using it to dry his hands.
Obviously I don't want anybodydrying their hands with that
towel.
It's in the dirty basket.
So I have to go around the houseand start asking who did this?
Did somebody take the towel outand put it back on the hook?
(33:02):
And, as a matter of fact, yes,I found out somebody did, and it
was not my child, it was afull-grown man.
His grandfather actually pickedup a towel out of the filthy
basket and put it back up on thehook.
Hey, I'm not concerned formyself.
I would know if a towel wasdirty as soon as I touched it,
and most of us in this housewould.
(33:23):
But I'm very concerned becausemy child loves to play in water
and this is where he goes.
And now you just put the toileton my child's mouth.
What the fuck?
So that became a big learningpoint for the grandfather.
I made a big deal of it.
I showed him exactly where thattowel had been used and exactly
(33:44):
what my son does with his hands.
When he washes his face anddries his hands, he then rubs
everything all over himself.
So the grandfather realized atthat point and he actually
admitted that was wrong of me.
That was stupid of me.
I have plenty of clean towels.
That was the wrong thing to do.
I understand.
I won't do that anymore.
So great, fantastic.
(34:05):
I'm glad we could have ateachable moment, old man.
So that's the beginning of thestory.
Now fast forward to last week.
I was giving Jacob a bath.
I had just gotten done.
I was gathering all of theitems from the bathroom and
distributing them to theirrightful places throughout the
house and as I was walking outwith my hands full, I noticed
that there was a dry washclothon the floor in front of the
(34:29):
linen closet.
Here's a little side note onthis linen closet.
It's got stuff on the topshelves that has been there for
probably 10 or 15 years and itactually has carpet in the
bottom of it.
That was there before thisfamily moved here.
They moved here about 35 yearsago.
Okay, it's also a little toonarrow to be an actual regular
(34:50):
closet and you can't even fitthe vacuum cleaner head in there
to clean it.
Keep that in mind.
So I found this washcloth and Ithere was no way I could pick it
up, and I didn't want to try tokick it down the hall and down
the stairs and around the houseuntil I got it down to the
laundry area.
I just said, well, I'll pick itup next time.
And then, of course, next time.
My hands were full again and Iwas walking by.
I said, damn man, I got to pickthat up because that incident
(35:12):
is always running through myhead.
I don't trust that old man andI don't trust him to do the
right thing.
If he sees that rag, I don'ttrust him to put it in the dirty
clothes.
I don't believe that he will.
So it's.
I feel it's my responsibility topick up the stupid washcloth.
It looks like it's clean too,and that makes it even more
dangerous.
It's almost completely foldedand it's dry, and I think that's
(35:35):
just enough for Tweedledum toscrew up my whole program of
cleanliness and wellness andsafety with my son.
So I was kicking myself likeshit.
I got to pick this up.
I got to pick this up.
Well, then I got busy wherever Iended up in the house, and this
just went on for the entire day.
I wake up in the morning andthe damn thing is still there.
(35:56):
Now it's rolled up underneaththe closet door, as the closet
door had been shut by somebody.
Usually it's the grandfatherthat likes to shut that door and
not worry about what's on thefloor.
So I was like, okay, here Ihave to do this.
But Jacob was awake.
He had just come to me at thebathroom door and I needed to
get his medicine.
So again, I didn't pick up thewashcloth.
(36:16):
I don't like touching thingsthat are dirty if I have to do
something clean with my handsright now.
So my fault, I didn't do it.
Yet I did make mental note,though like, okay, that is in a
different spot.
I got to keep my eye out justin case someone else sees that
before I come back up here topick it up.
Lo and behold, I came up thereto pick it up and it was gone.
So I was like, okay, let'scheck the dirty basket in the
(36:39):
bathroom.
Nope, it was not there, and Iknow because it's an off color
and it doesn't match the rest ofthe stuff.
And it wasn't there.
So like, okay, great, let me godown to the basement and the
laundry area and see if it'sthere.
(36:59):
No, it's not there.
So I go up to the linen closetthat is still closed but there's
no rag on the floor and I gothrough the little container
that holds the washcloths.
It's not in the top of thecontainer.
So I picked up the whole stackof clean washcloths and on the
bottom, not even folded, it'spicked up exactly the way.
I remember it laying on thefloor and it is set down in the
bottom of this plastic bin withall the clean washcloths on top.
(37:21):
Cuss words up and down freakedme out.
I couldn't believe it.
I was already going through athing of saying to my spouse hey
, we need to stop using thesetowels because they smell.
He washes them and they juststink, like a dirty dog, or like
a dirty vacuum, to be morespecific, and I couldn't figure
(37:43):
out why.
And then, just two days beforethis incident, I got a peek
inside of his room, because heleft his door open and sent my
spouse in there for something,and I saw that right next to
this basket of clean towels thathe collected from the dryer and
parked in his room so he couldgo sit and sleep in front of the
TV.
There is a vacuum two feet fromit and he doesn't vacuum the
(38:06):
house.
Just wanted to give that asecond to sink in.
So I was like, yeah, well, Ihave super sensitive skin.
I don't think it's safe for meto use these towels and
washcloths.
I like them because they'reright there next to the bathroom
and I don't have to keepremembering to bring one of mine
from downstairs every time Ineed to go in the bathroom.
But you know, the conveniencejust isn't worth it if this is
(38:29):
causing my skin issues.
So I want to stop using thesetowels.
And then, son of a bitch, andthen this happens.
So I brought it to my spouse'sattention and I told him exactly
what happened and he's justspeechless, you know.
So, yeah, so I made the rule weare no longer using house
towels and wash rags.
My spouse is grossed out enoughby this that he actually is
(38:49):
adhering to this new rule.
Normally he's just kind of likewhatever and just does whatever
he wants, but he is evengrossed out by this.
So I am grateful that I noticedit.
I'm grateful that I alreadyknew the pattern that probably
existed within the old man to dothat terrible thing to us, and
I'm glad that I noticed that itall happened and that my spouse
(39:10):
is on board to support theboycott of the towels in the
house now.
So anyway, I guess that's.
I'm grasping at straws here forgratitude this week, but that
is my story of gratitude.
I'm very grateful that I was onto him and that I knew it was
going to happen and that Iinvestigated it and that those
dirty things did not touch myson's mouth or anywhere else on
(39:31):
his body.
It's just really disappointingwhen you have to babysit.
Every single thing that goes onaround your own life.
My son would never know.
I mean, anyway, whoo yeah,there's my story of family never
letting us down.
How about you?
I'm hoping you have a story youcan turn into a grateful
(39:52):
experience as well.
You hang in there.
(49:05):
You're a superhero.
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