December 24, 2024 • 39 mins
This episode features a heartfelt conversation with my spouse Jason as he describes being a single father of a child newly diagnosed with autism, sharing insights about the journey through diagnosis, therapy, and the advocacy needed within education. The emotional rollercoaster of birthday reflections and the importance of understanding energy dynamics in their relationship forms a compelling narrative.
• Jason's experience and journey through Jacob's diagnosis
• The critical role of play-based therapy in early communication
• Insights on advocating for quality education tailored to individual needs
• Importance of emotional energy in interactions with children on the spectrum
• Reflections on milestones and gratitude in the context of family experiences
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (00:17):
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your host, ShannonChamberlin .
I'm so happy that you're herewith me today.
For more information about eachof these episodes, you can head
on over to psabuzzsproutcomwhere you'll find the transcript
, show notes, contact email,social media page, coupon codes
(00:47):
and merch, as well as a link tosupport the show, where you can
just buy me a coffee for aslittle as $1, and a portion of
the proceeds from that programand from any merch sold will go
towards helping other severeautism families in need who may
not be able to afford thesensory items, therapy items or
specialty foods for their lovedone.
Today we have an interview withDad.
(01:07):
My spouse, my husband Jason, ishere with us and we get all of
our questions answered about hisfirst experiences and just his
point of view, because it'sgoing to be a little bit
different from mine.
One thing I never told you isthat music on the intro and
outro of this podcast waswritten by my husband, Jason.
I wanted to have some nicemusic, but I didn't want to deal
(01:29):
with copyright infringementsand I just wanted to know that
we were all a part of this as afamily, so I thought I would ask
Jason to create something,because he does play guitar and
he's into music and that musicthat you hear is original,
original created by him.
Welcome, husband, how are you?
Jason (01:47):
Hi, hello, so nice to be here.
Shannon Chamberlin (01:49):
Did you have anything you wanted to say
about the music?
Jason (01:52):
Well, there is more to it .
There is a bridge and a chorus.
That's kind of an intro thing.
There are lyrics to a song thatI'm putting together, but it's
a difficult song to finish.
It's a hard song to face, youknow with the lyrics and the
emotion behind that.
Shannon Chamberlin (02:07):
I feel that too.
I've noticed every time I tryto listen to it.
Any more than what I've got onjust my intro and outro, it does
actually make me tear up.
So it is a very emotional songand, as I understand it, you
actually wrote this specificallyfor the podcast and, more
importantly, specifically aboutand for Jacob right.
Jason (02:26):
Yes, I started on the song before you asked me to come
up with something for thepodcast.
So as soon as you asked me tocome up with something, I
already knew what.
I already had it and I knew.
Shannon Chamberlin (02:37):
Oh, I don't think I knew that detail.
Jason (02:40):
Sure, I just it's been, it's been a kind of a secret
project.
You know, I have to be in avery specific frame of mind to
approach that song.
Shannon Chamberlin (02:48):
Yeah, that makes sense.
I'm sure everyone listening canunderstand that it's an
emotional roller coaster everyday for us, especially when we
tap into our emotions to paytribute.
Husband and I wanted to startkind of from the beginning, from
the times when I was not hereand I have no idea how things
(03:10):
were happening.
So my first question for you iswhat made you test him?
Was it a specific behavior or astring of behaviors or a string
of milestones not being met?
Or was it maybe someone thatyou knew said something to you?
I would like you to just tellyour version of that.
Jason (03:28):
Okay, so Jake was born in 2000.
When 2003 came and went, hestill wasn't speaking anywhere
near the level of actually justwasn't at all at that point,
because it was late 2004 beforeI heard him try to speak words
on purpose and his first wordswere to infinity and beyond.
(03:50):
So yeah, that was in August of2004.
But leading up to what got himdiagnosed, that was interesting
because I had never met anyonewho had a child with autism.
I had never met someone who hadautism.
I can't really remember toospecific, but I think perhaps I
was aware that there was a movie, rain man, about someone with
(04:12):
autism.
The epidemic of autism was justbeginning.
At that time there was somemilestones not getting reached.
Yes, there was some physicalcharacteristics that were
happening.
He always had eye contact andthings like that.
But he sensory wise, he had tohave something in his hand at
all times and he liked to shakethings and kind of look at not
(04:35):
directly at what he was shaking,but it was always at a like he
was looking at it out of thecorner of his eye and he would
do that with no matter anythingthat he was holding.
So he was always flapping andit was usually a Beanie Baby
because Beanie Babies wereeverywhere back then.
Every store you went in hadbins and bins of Beanie Babies
and his grandma, who suggestedat first that we get him tested
(04:59):
because she suspected that hehad this autism thing I'd never
really heard of, she had BeanieBabies everywhere.
So he started, you know, veryyoung, with flapping Beanie
Babies and they make a sound.
You know that I thought that helikes, but really it was
everything he picked up he likedto shake.
I agreed that he definitelyshould have been talking, you
know by now, and there might bea few things you know, like the
(05:21):
shaking things, that I thoughtwas strange.
So, ok, let's get him tested.
That was a three-day process.
There were five, six differentprofessionals that met with him.
It was five to six hours a dayfor three days at Easterseals,
so quite extensive.
I'm not even sure everythingthat they did, but they
concluded at the end that he wasautistic.
(05:43):
That's when I first realizedthat, yeah, things might just be
a little bit different, youknow, for this father and son
journey than what I had in mind.
Shannon Chamberlin (05:53):
Wow, so it was a grandmother.
Was that your mom?
Jason (05:57):
Yes.
Shannon Chamberlin (05:58):
And she worked in health care, so she
had some sort of knowledge orsomething.
Jason (06:03):
She had some sort of knowledge of autism that I
didn't.
Maybe that was, she was justguessing at that point, you know
.
But with him being so speechdelayed and everything, and
maybe it was some of the factthat he did have peculiar
mannerisms, you know that shewas the first to say, hey, I
think he's autistic.
Shannon Chamberlin (06:21):
Well, thank you for telling that story.
I do have a question about thetesting.
You said it was really long,with five hours a day or so and
over a several-day period.
Were you aware of the types oftests that were going on?
Did you know what they weredoing and what the results were
supposed to be?
I guess what I'm reallywondering is how obvious was it
(06:44):
to you or to the professionalsduring the testing?
Did they give you any inklingduring the testing, or did they
just have poker faces and waituntil the very end and then lay
it on you?
Jason (06:55):
I honestly don't recall too much of the detail on that.
To be honest with you, I just Idon't remember.
Shannon Chamberlin (07:01):
Well, that's fair enough.
I don't remember a lot of stuff.
So I know that you went throughlike this play therapy thing
once he did get diagnosed and itwas all on video and stuff,
just kind of trying to learn, Ithink, how to interact and how
to communicate with each other.
That's how I understand it.
I never was really there andeven when I watched the videos
(07:23):
that you had available, I stilldid not know a thing about
autism, because this was veryearly on, so I didn't really
know what I was even watching.
To be honest, about that, Ilearned later on that it was
therapy for learning how tocommunicate with each other.
Your most memorable experienceor the biggest thing that you
(07:44):
learned during those therapysessions Because autism was so
new to you at the time was thereanything that stood out that we
might be able to pass on to newparents who are just getting
this diagnosis?
Jason (07:57):
Right, yeah, so the idea of the play project it was the
first therapeutic thing thatJacob experienced where a
professional came out and setscenarios with different toys
and just observed.
Some of the mysteries of autismwith these individuals is you
have to observe their mannerismsand observe them to see what
(08:17):
makes them happy or to see whatdisturbs them.
You know, it's just a lot ofobservation.
That was 90% of the playproject.
Through that she wouldbasically watch the video with
me and be like see how he isgoing with this.
He likes the feeling of this,these wheels of the semi running
over the carpet back and forth,like that, or he likes the
(08:41):
sound that this toy is making.
He doesn't like the sound thistoy is making.
One of the interesting thingsabout Jacob when it came to
playing was that he would neverplay with anyone.
He would play near them but hewould never actually play with
them.
That was something very, veryinteresting Until actually Mason
(09:02):
little Mason Jacob wouldactually play with a big punch
clown with one kid.
I remember that veryspecifically.
But most of that was just you'rebuilding communication.
You're building new ways ofusing your bells and whistles of
a toy to set the stage forcommunication.
(09:22):
Basically, at that point,that's all you're trying to do.
You're giving words to thingsto help the language.
This is a speech therapy.
You know the truck is red, it'smaking an alarm sound.
You know this is a fire truck.
The lights are red and blue,it's got six or eight wheels.
It's just really communicatingon purpose through playing.
Shannon Chamberlin (09:43):
Yeah, yeah, that's really awesome.
I really feel like that pointsto what I've come up with just
raising Jacob with you as far asthe way that he learns and I
know every one of these kids isdifferent but I think that they
all may have some things incommon regarding how they
perceive things or how they feelabout things, or you know,
(10:07):
there's just there's got to besome common threads there.
And just what you were sayingabout the play project I feel
that for our son, play astherapy does help him learn a
lot.
And that just takes me back tothe idea that I'm working on
with this blueprint that I'vebeen hyping up a lot.
I've been really excited aboutit and it's just because I think
(10:29):
it's really important toremember how each one of these
children is able to learn andabsorb, and you know you can
teach him that in the classroomor you can teach him that
through play, and one of thosemethods is going to sit well and
one of them will not.
So I really think that justlistening to that story and
picturing him playing, he'salways done well with play
(10:52):
therapy of any sort, and I guessI kind of wanted to throw that
in there for everybody listening, just to keep an open mind
about the way that your childcommunicates, the way that they
will learn, because you're goingto learn the same way.
That's my experience anyway.
But what I do know is thatanything where you try to put
him in a box and make himconform to the way that things
(11:13):
have to be done, he doesn'tlearn anything and it's a
nightmare.
Jason (11:17):
Yeah, so that's right.
You're looking basically forclues.
You pick something, anythingand you interact with it.
You're looking for a way tobecome a more effective
communicator.
It's a way to gain insight intothat mind.
It's got a lot of potential tohelp build skills and be able to
identify things if you makethem.
(11:37):
The whole learning processbecomes fun if it's intentional.
Shannon Chamberlin (11:42):
When you were going through the early
days of getting him diagnosedand then learning how to
communicate and learning thethings that the experts you were
working with were able to passon to you, did anyone that you
were working with tell you thatanything would always or never
happen with him?
You know what I mean.
(12:02):
This is never going to work.
This will never happen in hislifetime.
You can never expect to seethis from him, or this is always
going to be a constant with himfor the rest of his life.
Was there any of that?
Jason (12:14):
No, I don't believe.
So.
I really don't recall anyoneputting any limits, you know, on
what he was going to be able toaccomplish or anything like
that.
Shannon Chamberlin (12:25):
The reason I asked is because when we first
met, one of the things that wetalked about was that you felt
that he knows who you are, butif you just disappeared, he
wouldn't really know thedifference.
And I was just wondering ifthat was something that, as a
father dealing with this, ifthat's just something that was
(12:48):
deep in your heart and soul,that you felt an absence of it,
or if that was something that aprofessional maybe planted in
your brain and said that.
Jason (12:57):
Yes, that was something that I thought about at times.
I think that there were acouple of factors that kind of
made me wonder about that, oneof which you know how some of
these individuals on thespectrum they not only was he
able to look everyone in the eye, but he would jump up on your
(13:26):
lap and give you a hug and akiss if he just met you.
He displayed the same affectionfor absolute strangers.
He treated them just like hetreated me.
So that was one of the thingsthat probably made me wonder
about that.
Also, there were things that Ithought were interesting, like
his first day of school.
I was just terrified and acomplete mess, and I know this
(13:50):
is normal and everyone canrelate to this.
But yes, it's like he didn'teven realize that I left.
When I got there to pick him up, he never really cared.
He didn't show that he cared ifI was there or not.
So it kind of made me wonderand, as you know, he was eight
years old before he said daddy'shome.
Was he seven or eight, six?
(14:11):
Yeah, daddy's home, you know,six years old.
You know, I always kind offantasized about hearing that.
And you guys worked all day onit one day and brought me to
tears when I came home one day.
Shannon Chamberlin (14:22):
So yeah, I remember that.
Yeah, I just couldn't let thatsadness go on for very long.
Once I learned that that wasthe consensus, like no, no, I
can't accept that.
And he did.
He allowed me to teach him that.
That was really cool.
I wonder if they knew back thenhow prominent OCD is with
(14:44):
autism, because while you weretelling that story, I was
thinking about how absolutelyobsessed with you and your
presence he is now, and that ofcourse, got me thinking about
how obsessed he can be with alot of different things.
But it didn't show up for along time and you know we can't
go back and ask those people now, but it just it did cross my
(15:06):
mind.
I wonder if they knew that thisautism is compounded by all
these other isms in the psyche.
I guess it is.
Did they mention anything toyou about stuff like that?
Jason (15:17):
No, I don't think there was too much on that, you know,
such as OCD or insomnia.
I think part of that is becausethe epidemic of autism was
still in its infancy Then.
I think that the people todayare a lot more educated than
they were in the late 90s.
I'm going to say this I mightbe off a few, but it was like
(15:40):
one out of 96 kids werediagnosed Within a few short
years.
It was one out of 50.
So, and it all happened very,very quickly, so they probably
are a lot more aware today thanthey were back then.
Basically, it was a learn asyou go thing.
When it came time for him to goto school, they had no idea
what to do for him.
What are we supposed to do aseducators, as parents?
Shannon Chamberlin (16:02):
That actually leads me into my next
question.
You mentioned that the firstday of school you were really
freaked out, but he didn'treally know the difference of
anything.
When did you first realize thatyou were going to have to
advocate for a?
Jason (16:19):
special type of education for your son.
Right off the bat they didn'tknow what to do.
They told me they never actedlike they had experience with
autism.
This was at the HomewoodHeights School in Creve Coeur in
Illinois and that's where theprogram was.
So they're basically theirhands are up there like I don't
know and I'm like, ok, well, hehas autism.
I made some calls around toother districts and asked them
(16:41):
hey, do you have any kids withautism?
What do you do?
They were very friendly and Itold them my situation and they
said well, come by, take a look,ask any of the questions that
you want to.
You know they were kind ofgreat about that.
I went to three differentschools.
I saw things like PECS, thepictorial schedule curriculum
thingy.
You know that they let kids onthe spectrum have a picture of
(17:02):
the next activity.
It was very good.
It eases the anxiety by thekids always know what's coming
next.
They have a visual cue this iswhat's next.
They're never in limbo and youknow whether they're looking
forward to it or not.
They know it's coming andthat's comforting.
That's one example.
There were light issues, audioissues.
You know different things thatthey do out of regard for the
(17:26):
autistic and special needsprograms.
So I basically took what Ilearned from these three schools
.
I brought him back to hisschool and said, okay, this is
what they're doing and why, andthey incorporated it.
Yeah, jacob was the first one,and when Jacob left that program
, they had a fully functionalprogram that was appropriate for
kids on the spectrum that weresensitive to you know, the
(17:49):
lights, the noises, everything.
Shannon Chamberlin (17:51):
Just a quick curiosity question how would
you compare the reception ofschool faculty back then to your
request to incorporate thesethings that your child needs?
Compared to the reception ofschool faculty in more recent
years, do you think that therewas more of a willingness to
work with you and your son onhis needs back then?
(18:14):
Or do you know what I'm saying,because we've experienced a lot
of roadblocks and walls up andthings like that in the recent
past as he has gotten older andthe rules for educating him have
stayed the same.
So was there resistance backthen, or how do you?
How would you gauge that?
Jason (18:30):
I would say in the very beginning there wasn't any
resistance at all.
I think that there is somethingvery valuable in understanding
that you know nothing.
That way, you are very, veryopen to learning what did happen
.
Let's fast forward to 2010,2012.
Now you have so many peoplethey over and misdiagnosed
autism that too many educatorscome to the table with they've
(18:51):
already made up their minds.
They think they understandautism.
Make, when you are dealing withan individual, is you think,
because you met someone elsewith autism, that you understand
autism?
That's the biggest folly.
From the beginning, you alwayshave to understand that every
individual is different.
There are some common threads,but they are so different from
(19:14):
each other that you at leasthave to empty your cup of what
you're prejudging and everythingelse like that, so that you can
accurately observe what is infront of you, unbiased by your
previous experience, becauseyour previous experience is
going to serve you very little.
As human beings, we try tocompress things into boxes so
that we can understand them andwe can relate to them, and you
(19:35):
cannot do that with autism,because it is a spectrum and too
many people think too much oftheir abilities to be able to
relate to them and that closestheir minds off to, you know,
important cues and lessons thatthe individual with autism is
actually is sharing ordisplaying.
So I think that's probably oneof the biggest things is back
(19:57):
then it was new, no one had aclue.
Everyone knew they wereclueless.
Fast forward, many educatorsthought because they went to a
seminar and learned what thedefinition of autism was and
shoved it into this very genericterm.
And this is what we do.
They think they have a handleon it.
Explain it so well, but it'strue.
Shannon Chamberlin (20:23):
It's my opinion that the biggest pain
point is that it is anindividual.
It is the autonomy and theindividuality that is still
existing and is very much alive,and it's just, it's bundled up
inside of this severe autism.
It's covered, but thatindividual is still trying to
get out.
And then these people theythink well, I learned the
definition and I learned howeveryone thinks that most of
(20:46):
these kids learn and that's whatI'm going to do.
And then they stifle theindividual and now they're not
helping anything at all.
These poor kids.
They're just, they're not beingconsidered as humans anymore.
Jason (20:58):
Yeah, the biggest thing with the education system is the
fact that it is a cattle call.
They heard the kids and teachthem all the same things and
when you have class with five,six different autistic kids in
it, you have five, six differentways you have to approach and
communicate.
That's what happens later on.
Probably where educators areoverall at now is they may think
(21:21):
that they have a grasp on whatthey need to do, but how
counterproductive that can be.
I mean we went from I went inmy personal experience to
educators who were veryinterested, they were very
engaged to learn about this thatthey had no idea about it 12,
13, 15 years later.
Not only do you not have thatadvantage, now you have teachers
(21:41):
that don't even listen to theparents.
Okay, because they're educatorsand they've been educated on
autism and they know exactlywhat they're doing.
You remember the notebook?
They stopped followingdirections and then they start
to wonder why they're having somany problems because they
stopped listening to me on howto get the best behavior out of
Jacob.
Shannon Chamberlin (22:01):
Right, yeah, In my podcast here I call that
parent law.
And they don't.
Even when you point out themistake and tell them the
reasons, they think they knowbetter and it really is
maddening.
So if any of you are goingthrough that out there, you're
not alone.
As you mentioned, it is aspectrum.
It is widely overdiagnosed,possibly misdiagnosed, and, as
(22:24):
I've mentioned in many of myepisodes, we never knew that our
son had severe autism untilmany, many years later.
How far do you think they'vecome at the schools for this
type of autism, or is there evenan answer for that?
Jason (22:37):
I'm really not sure, to be honest with you, if there's
any difference at all.
Now it's been a few years sinceJake's even been a student, but
I can tell you that overall Isaw no progress for the last 10
years.
He actually was at school.
Yeah, I saw very little.
That you know.
Jake needed a personalassistant basically at all times
, you know, and that's, you know, really a stretch for these
(23:00):
schools, you know, to be able toto do that for every single kid
.
I didn't see a lot of kids likeJacob in any program at any
school.
I mean, it's almost like evenfor being autistic he's
exceptionally autistic.
So that was very challenging foreducators, you know, because
they they have to have thisfeeling like they know what
they're doing.
They have to have a feeling ofsome direction to take with
(23:22):
quote, educating this person andnot enough of just observation
and being around.
I think that the mostoverlooked thing that kind of I
would call it an elephant in theroom, but I don't even know if
most people even understand thatthere's an elephant in the room
but that elephant is energy,that there's an elephant in the
room but that elephant is energy, the most important thing for
educators or anybody tounderstand when you are dealing
(23:42):
with someone who has severeautism is that they are very
sensitive to energy.
They are going to pick up onyour energy.
You can't BS them the way thatyou can other people, because
they communicate on a differentlevel.
You know they really do.
We've seen this with Jake timeand time again how sensitive he
is to energies.
So if a teacher is going tohave a smile on her face but
nothing but funkiness on theinside like I can't wait for the
(24:03):
bell to ring, you know, orshe's already thinking about
something else or whatever, andthis, and that no matter what
she's saying, how it's beingreceived, you can't hide that
they're very sensitive toenergies and it takes a very
special person to deal with themin an academic environment and
people to realize that you know90% of that is going to be just
to be present and observed,because they're all enigmas,
they're all, they're allmysterious, they all have a code
(24:26):
and you have to crack that.
That's the idea.
That was the idea with the playproject and everything else is
you're looking for clues, cluesto help you communicate.
Shannon Chamberlin (24:32):
Yeah, I agree, and I thought that we
shouldered a lot of theresponsibility of helping them
understand.
We never wanted them to gothrough.
You know, like you're justdriving along on dry pavement
and then all of a sudden you getstuck in the mud and now you
can't get out of it.
You're spinning your wheels andthe kid's on the other side of
the big mudslide and you can'tget through it.
And we didn't want education tostop for our kid or the other
(24:56):
kids around him.
So we, I feel, shouldered a lotof that burden and went to each
educator and gave them theplaybook.
We gave them the playbook, andnot only that, but we advocated
for more therapy time in school.
They were unable to providethat, but the reason that I
think that therapy was going tobe important is because they're
(25:17):
still observing the child.
The teacher doesn't have timeto observe.
They need to rely on the peoplewho observe the child and
provide therapy and learn how tocommunicate and sometimes that
communication has to change dayby day.
But they can at least add tothe playbook and then give that
back to the regular teacher andsay this is how you work with
(25:39):
this kid.
But I really did feel that wetried to eliminate the getting
stuck in the mud.
We tried to eliminate a lot ofthe problems that we foresaw and
they were very non-responsive,not interested in receiving that
information.
Jason (25:54):
Patience is the biggest thing that they lack.
Not patience today, but thelong view of patience, patience
to build a rapport over sixmonths or a year, of just being
next to a nonverbal or veryspeech delayed, autistic person.
That's what's missing.
(26:14):
Everyone's in a hurry.
You know everyone wants to havean IEP and we want to meet
these benchmarks and we want tomeet these goals.
They're obsessed with progressand while I agree that it's
important to be able to maybedraw some lines like you know
okay, we expanded our vocabularyfrom five words to 20 words
that progress is great, youcan't force it and if you do,
(26:36):
you're going to bring forth anenergy and a behavior that is
counterproductive.
I always started every IEP.
Every time I sat down withsomeone new that was dealing
with Jacob and I always told himthe story, the same story, and
it was the story of when we wereswimming in the pool.
One year, for the longest time,he loved me to put a life
jacket on him and pick him upand throw him in the water.
(26:57):
He loved it.
He loved it.
He loved going under the waterand popping out like a bobber or
a cork the next year, insteadof us getting into the pool and
swimming around and having funand working up to that.
I tried to pick up right wherewe left off.
Well, he kind of forgot abouthow much fun that was.
And I kind of freaked him outbecause when the pool was open I
put the life jacket on him andI picked him up and I threw him
(27:19):
in the water and I was expectinghim to come up and to be
laughing and cheering the waythat he was, you know, five
months, six months ago, whateveryou know and he didn't
appreciate it at all.
He got very upset.
It was like what the hell areyou trying to do to me?
And it was two and a half yearsbefore he would let me get in
the pool with him again.
(27:39):
If I sat down on the oppositeend of the pool and put a toe in
the water, he would get out ofthe water and wait for me to get
away from the pool until he gotback in.
And it was two and a half yearslater when we finally was able
to swim together.
I about cried.
I didn't know if I was evergoing to be able to go swimming
with him again.
Two and a half years went by.
We together.
(28:01):
I about cried.
I didn't know if I was evergoing to be able to go swimming
with him again.
Two and a half years went by.
We were at a hotel.
You remember that day?
Yeah, I try to explain that tothese educators.
If you upset him, if you betrayhim in any way and he knows and
he will not come here, he willnot.
No one will hold a grudge likethese kids, and they don't even
know the meaning of the word.
But if you burn them, you haveburnt them forever.
Shannon Chamberlin (28:17):
Yeah, absolutely, and that's a great
story to tell to anyone who hasnever met him and who has to
plan on working with him for,you know, four to seven months.
It's a shame that no one wantedto listen.
I have told that story a coupletimes, not to the detail, but I
was just thinking.
I think we were at Chula Vistawhen he finally warmed up to you
.
We were traveling for work andwe were there for a couple of
(28:40):
days and we were down at thatpool for hours and he would not.
It took almost the entire stayat that hotel before he allowed
you to be in the pool and I doremember you got your toe in
there and then you got yourbottom of your leg in there and
he had big eyes looking over hisshoulder while he was trying to
(29:02):
run away and get as much waterbetween you and him as possible
and he was going for the ladderin the deep end while you were
getting in the shallow end andit was an ongoing process and
finally he allowed you to comeup and give him a hug in the
water and pick him up, and thatseemed like more than two and a
half years to me, but yeah, itwas forever, and that process of
(29:26):
watching him warm back up tothe idea of the person in the
world that he trusts the mostwith his life and with
everything in his life could notget close to him in his
favorite part of life, which isthe pool.
That was really hard for me toprocess and I wonder if the
grudge holding that youmentioned is maybe because he is
(29:46):
also very aware of his sensoryprocessing issues and he felt
perhaps let down by the peoplewho he has put in place to guard
him against these sensoryprocessing issues and so he had
to throw up a wall.
And maybe that's what it reallyis and we think that he's
holding a grudge, but he's justtrying his best, the only way he
(30:07):
can think of, to regulate whatgot shattered a little bit for
him and I'm really glad he gotover that.
You can run his whole life bythat story, absolutely.
Jason (30:16):
Yes, I think it offers a clue, it offers an insight and a
glimpse into the way that hethinks.
And it's important for us to dotwo things at the same time.
And it's challenging becauseyou're not always going to be
perfect, you're not always goingto have inexhaustible energy,
you're going to hit exhaustion,you're going to hit every kind
(30:39):
of emotion and you're just notgoing to have time for the
bullshit.
At the same time, you have tocheck your energy.
You have to try to not projecta funky, funky energy that they
can feel.
You know it's a very, verytough thing to accomplish
sometimes, because we're notperfect.
They're all different and noneof them come with an owner's
(31:01):
manual.
It's important to learn aboutthe energies that they thrive on
or that upsets them, so thatyou can kind of curve yours to.
You know, have a productive day.
You know, sometimes it'simportant.
Just okay, this is where I'm attoday.
I need to recognize it.
I don't have it today.
I'm not going to be able to dothis.
I'm not going to be able todance for you all day.
(31:22):
I can't sing and dance for youall day.
Today I can't do it.
Shannon Chamberlin (31:25):
And then you can take some sort of
appropriate measures tosafeguard your own sanity me and
I was not growing up withautism, but it always irritated
me when I was a kid and I wasinsulted by it.
But it's the absolute truth thatit's not my job to entertain
you and he actually he feels thesame way I used to when she
(31:48):
would tell me that you know, alittle insulted and like, well,
yeah, it is your job.
I mean, takeaway on that is thathe will absolutely exploit the
energy that you're trying tohide.
You mentioned earlier about ifsomeone is, you know, trying to
hide everything and wearing asmile on their face, but in
their heart they're feelingangry or pessimistic in any way,
it's not going to work and Itruly believe, especially with
(32:11):
Jacob, that he will exploit that.
I told the story a long timeago about us being at the state
park and the old ladies cominginto the water with their done
up hair and not wanting to getwet, and as pretty as they
looked and as nice as theylooked on the outside, he could
read their energy that they werepissy about him splashing
(32:33):
around in the water in aperfectly public lake where he
has every right to splash, in aperfectly public lake where he
has every right to splash, andthat is one example of him
exploiting that negative energythat he's feeling from someone
he doesn't even know, andhopefully you guys can pass that
on to anyone who will bedealing with your children, if
you haven't thought of italready.
Jason (32:51):
Right.
I don't think it's wise to setyour expectations too high for
compassion from theseindividuals.
They will club you like a babyseal and you know, not think
anything of it until you areabsolutely shattered, and then
they'll receive that energy andthen they will sincerely
apologize at times.
(33:12):
But I mean, you know, you gotto be broken to a million pieces
all over the floor and then allof a sudden they'll get happy.
Yeah.
Shannon Chamberlin (33:23):
Or he'll apologize sincerely and go
upstairs and create another hellmess for you, that he'll just
keep it quiet until he thinksyou're ready to know about it.
The next couple of questionsare a little more heavy and
maybe a little more triggeringfor people.
So I'd like to close thisepisode with a recent birthday
(33:43):
story and a message of gratitude, and we'll move the remainder
of this interview with Dad intomy next episode that comes out
next Wednesday.
If you are in the United States, you're in the time of
Christmas right now, and this isa challenging time for almost
all of us in this boat.
As you know, we just had thisissue with the what do you want
(34:05):
for your birthday?
Because our son's birthday wasjust the other day.
He just turned 24.
This is kind of compounded onus.
It was a very hard day on the19th for him to turn 24.
He did not want any part ofthat day.
It was a nightmare of a day.
I cried almost all day and Iwent to bed early, and then it
kind of even affected me intothe next day, which was
(34:26):
yesterday, you know.
And then we have Christmas Now.
As you know, we don't doChristmas, and that's largely
because of Jacob's preferencesand behaviors and I have come to
learn to be grateful even forthat.
I'm grateful now that I don'thave any Christmas decorations I
don't even have any and I don'teven look at them and I don't
(34:47):
even care.
And I'm grateful because I haveJacob and he keeps me very busy
.
And if I had to deal withfinding my decorations, putting
them up, fighting him and myprobably my husband about the
decorations and then rememberingto take them down at the right
time and put them away nicely,while also still having to take
(35:07):
care of my motherly duties, youknow, I just don't think that's
for me and I think that Jacobdid me a favor.
And so if you're in this boatand you're a little bit sad, you
know it is the holiday, ormaybe your kid did just have a
birthday and they don't know anydifferent, I'm sure you can
find something.
You know, maybe it's a blessingthat your child doesn't know
(35:27):
that their birthday is supposedto be special.
Maybe you know, because what'sthe alternative?
The alternative is a kid whoknows exactly how old they are
and exactly what all theirfriends did for their umpteenth
birthday, and you're not able toprovide that for them.
So I mean, there's alwayssomething, and I'm grateful that
he doesn't have these greatexpectations for me to live up
(35:49):
to.
He didn't expect me to give hima car when he turned 16.
He didn't expect me to allowhim to go out drinking and
roadloading with his friendswhen he turned 21.
No, he didn't even want me toallow him to go out drinking and
road loading with his friendswhen he turned 21.
No, he didn't even want me tocelebrate his birthday the other
day, Okay so hey, thanks, kid,you know, because I was having a
(36:13):
hard time of it.
So it all worked out.
You know I am grateful forthese things they do.
If I concentrate on them, yes,they get me down, they make me
sad.
I love Christmas lights, I loveall that stuff, but I love my
sanity more and I'm not going todwell on all this stuff that I
can't have and I can't dobecause my kid doesn't like it.
I know what he doesn't like andI'm grateful for that, because
why fight it?
I know that he doesn't likepictures of his half sister
(36:36):
around the house.
Can't have him on the wall,okay.
So guess what?
No pictures.
I know he doesn't like messingaround with Christmas ornaments
anymore.
Okay, no more ornaments, youknow.
At least I know what he doesn'tlike.
I remember several holidays agowe actually came here from
Wisconsin we were still doingChristmas, so we came all the
way here.
Everyone was happy to see eachother, everything was going
(36:56):
great.
We kind of mixed his birthdayand Christmas all together.
For all of us neurotypicals itwas a really great day, but
Jacob didn't want any part of it.
He sat there on the couch andscreamed and whined and cried
and doom-voiced and just stomped, and he just did all the things
that you would not expect himto do during a happy moment
(37:18):
where he's getting showered withgifts and we didn't know what
was wrong with him.
Why is he being like this?
This is everything that hewants.
His family is here.
He's the center of attention.
We're trying to be not likeoverly attentive, but we're
giving him everything that heever wants, because he wants to
be on display.
He wants everyone looking athim, kissing him, hugging him.
He wants all the presents.
(37:38):
We're doing all of the thingsand he's very unhappy.
Well, about three hours later wewent to bed.
His grandpa comes and knocks onour door and says you need to
get out here.
Well, Jacob had puked all overthe house.
He was sick.
We didn't know it.
So I'm glad and grateful when Iknow what he doesn't like.
I know why he's acting the waythat he is.
(38:00):
I know how to observe him whilehe's doing it and try to figure
it out.
I know that he needs me tofigure it out and I'm grateful
for all of this knowledge.
Turns out we all got sick.
It wasn't anything that we ate,because we all ate different
food that day and while I wasgoing down the stairs to try to
take care of him, it soundedlike there was a freight train
running through my head and Icouldn't even walk.
(38:20):
I couldn't even keep my eyesopen because I was so dizzy and
it was so loud in my head.
And then within an hour myhusband was sick on the floor.
I mean, we were all messed up,but Jacob was sick.
That's what was going on.
It wasn't anything to do withanything else.
He just didn't feel good and hecouldn't tell us.
So I just wanted to tell youthat story, to let you know that
(38:41):
you are being blessed when yourkid is able to show you that
they don't like something.
Maybe you do have to take itout of your life.
Maybe you do have to put alittle display up in a private
room of your house so you canenjoy it, but that's okay.
At least you know, at least youdon't have that building thing
that is just going to fall allover you and disappoint you.
There's definitely something tobe grateful for in every little
(39:03):
lesson that you learn.
I hope that helps you as you gothrough this Christmas holiday.
Thank you so much for joiningme and my husband in this
special episode.
You hang in there, you're asuperhero.
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your host, ShannonChamberlin .
I'm so happy that you're herewith me today.
For more information about eachof these episodes, you can head
on over to psabuzzsproutcomwhere you'll find the transcript
, show notes, contact email,social media page, coupon codes
(00:47):
and merch, as well as a link tosupport the show, where you can
just buy me a coffee for aslittle as $1, and a portion of
the proceeds from that programand from any merch sold will go
towards helping other severeautism families in need who may
not be able to afford thesensory items, therapy items or
specialty foods for their lovedone.
Today we have an interview withDad.
(01:07):
My spouse, my husband Jason, ishere with us and we get all of
our questions answered about hisfirst experiences and just his
point of view, because it'sgoing to be a little bit
different from mine.
One thing I never told you isthat music on the intro and
outro of this podcast waswritten by my husband, Jason.
I wanted to have some nicemusic, but I didn't want to deal
(01:29):
with copyright infringementsand I just wanted to know that
we were all a part of this as afamily, so I thought I would ask
Jason to create something,because he does play guitar and
he's into music and that musicthat you hear is original,
original created by him.
Welcome, husband, how are you?
Jason (01:47):
Hi, hello, so nice to be here.
Shannon Chamberlin (01:49):
Did you have anything you wanted to say
about the music?
Jason (01:52):
Well, there is more to it .
There is a bridge and a chorus.
That's kind of an intro thing.
There are lyrics to a song thatI'm putting together, but it's
a difficult song to finish.
It's a hard song to face, youknow with the lyrics and the
emotion behind that.
Shannon Chamberlin (02:07):
I feel that too.
I've noticed every time I tryto listen to it.
Any more than what I've got onjust my intro and outro, it does
actually make me tear up.
So it is a very emotional songand, as I understand it, you
actually wrote this specificallyfor the podcast and, more
importantly, specifically aboutand for Jacob right.
Jason (02:26):
Yes, I started on the song before you asked me to come
up with something for thepodcast.
So as soon as you asked me tocome up with something, I
already knew what.
I already had it and I knew.
Shannon Chamberlin (02:37):
Oh, I don't think I knew that detail.
Jason (02:40):
Sure, I just it's been, it's been a kind of a secret
project.
You know, I have to be in avery specific frame of mind to
approach that song.
Shannon Chamberlin (02:48):
Yeah, that makes sense.
I'm sure everyone listening canunderstand that it's an
emotional roller coaster everyday for us, especially when we
tap into our emotions to paytribute.
Husband and I wanted to startkind of from the beginning, from
the times when I was not hereand I have no idea how things
(03:10):
were happening.
So my first question for you iswhat made you test him?
Was it a specific behavior or astring of behaviors or a string
of milestones not being met?
Or was it maybe someone thatyou knew said something to you?
I would like you to just tellyour version of that.
Jason (03:28):
Okay, so Jake was born in 2000.
When 2003 came and went, hestill wasn't speaking anywhere
near the level of actually justwasn't at all at that point,
because it was late 2004 beforeI heard him try to speak words
on purpose and his first wordswere to infinity and beyond.
(03:50):
So yeah, that was in August of2004.
But leading up to what got himdiagnosed, that was interesting
because I had never met anyonewho had a child with autism.
I had never met someone who hadautism.
I can't really remember toospecific, but I think perhaps I
was aware that there was a movie, rain man, about someone with
(04:12):
autism.
The epidemic of autism was justbeginning.
At that time there was somemilestones not getting reached.
Yes, there was some physicalcharacteristics that were
happening.
He always had eye contact andthings like that.
But he sensory wise, he had tohave something in his hand at
all times and he liked to shakethings and kind of look at not
(04:35):
directly at what he was shaking,but it was always at a like he
was looking at it out of thecorner of his eye and he would
do that with no matter anythingthat he was holding.
So he was always flapping andit was usually a Beanie Baby
because Beanie Babies wereeverywhere back then.
Every store you went in hadbins and bins of Beanie Babies
and his grandma, who suggestedat first that we get him tested
(04:59):
because she suspected that hehad this autism thing I'd never
really heard of, she had BeanieBabies everywhere.
So he started, you know, veryyoung, with flapping Beanie
Babies and they make a sound.
You know that I thought that helikes, but really it was
everything he picked up he likedto shake.
I agreed that he definitelyshould have been talking, you
know by now, and there might bea few things you know, like the
(05:21):
shaking things, that I thoughtwas strange.
So, ok, let's get him tested.
That was a three-day process.
There were five, six differentprofessionals that met with him.
It was five to six hours a dayfor three days at Easterseals,
so quite extensive.
I'm not even sure everythingthat they did, but they
concluded at the end that he wasautistic.
(05:43):
That's when I first realizedthat, yeah, things might just be
a little bit different, youknow, for this father and son
journey than what I had in mind.
Shannon Chamberlin (05:53):
Wow, so it was a grandmother.
Was that your mom?
Jason (05:57):
Yes.
Shannon Chamberlin (05:58):
And she worked in health care, so she
had some sort of knowledge orsomething.
Jason (06:03):
She had some sort of knowledge of autism that I
didn't.
Maybe that was, she was justguessing at that point, you know
.
But with him being so speechdelayed and everything, and
maybe it was some of the factthat he did have peculiar
mannerisms, you know that shewas the first to say, hey, I
think he's autistic.
Shannon Chamberlin (06:21):
Well, thank you for telling that story.
I do have a question about thetesting.
You said it was really long,with five hours a day or so and
over a several-day period.
Were you aware of the types oftests that were going on?
Did you know what they weredoing and what the results were
supposed to be?
I guess what I'm reallywondering is how obvious was it
(06:44):
to you or to the professionalsduring the testing?
Did they give you any inklingduring the testing, or did they
just have poker faces and waituntil the very end and then lay
it on you?
Jason (06:55):
I honestly don't recall too much of the detail on that.
To be honest with you, I just Idon't remember.
Shannon Chamberlin (07:01):
Well, that's fair enough.
I don't remember a lot of stuff.
So I know that you went throughlike this play therapy thing
once he did get diagnosed and itwas all on video and stuff,
just kind of trying to learn, Ithink, how to interact and how
to communicate with each other.
That's how I understand it.
I never was really there andeven when I watched the videos
(07:23):
that you had available, I stilldid not know a thing about
autism, because this was veryearly on, so I didn't really
know what I was even watching.
To be honest, about that, Ilearned later on that it was
therapy for learning how tocommunicate with each other.
Your most memorable experienceor the biggest thing that you
(07:44):
learned during those therapysessions Because autism was so
new to you at the time was thereanything that stood out that we
might be able to pass on to newparents who are just getting
this diagnosis?
Jason (07:57):
Right, yeah, so the idea of the play project it was the
first therapeutic thing thatJacob experienced where a
professional came out and setscenarios with different toys
and just observed.
Some of the mysteries of autismwith these individuals is you
have to observe their mannerismsand observe them to see what
(08:17):
makes them happy or to see whatdisturbs them.
You know, it's just a lot ofobservation.
That was 90% of the playproject.
Through that she wouldbasically watch the video with
me and be like see how he isgoing with this.
He likes the feeling of this,these wheels of the semi running
over the carpet back and forth,like that, or he likes the
(08:41):
sound that this toy is making.
He doesn't like the sound thistoy is making.
One of the interesting thingsabout Jacob when it came to
playing was that he would neverplay with anyone.
He would play near them but hewould never actually play with
them.
That was something very, veryinteresting Until actually Mason
(09:02):
little Mason Jacob wouldactually play with a big punch
clown with one kid.
I remember that veryspecifically.
But most of that was just you'rebuilding communication.
You're building new ways ofusing your bells and whistles of
a toy to set the stage forcommunication.
(09:22):
Basically, at that point,that's all you're trying to do.
You're giving words to thingsto help the language.
This is a speech therapy.
You know the truck is red, it'smaking an alarm sound.
You know this is a fire truck.
The lights are red and blue,it's got six or eight wheels.
It's just really communicatingon purpose through playing.
Shannon Chamberlin (09:43):
Yeah, yeah, that's really awesome.
I really feel like that pointsto what I've come up with just
raising Jacob with you as far asthe way that he learns and I
know every one of these kids isdifferent but I think that they
all may have some things incommon regarding how they
perceive things or how they feelabout things, or you know,
(10:07):
there's just there's got to besome common threads there.
And just what you were sayingabout the play project I feel
that for our son, play astherapy does help him learn a
lot.
And that just takes me back tothe idea that I'm working on
with this blueprint that I'vebeen hyping up a lot.
I've been really excited aboutit and it's just because I think
(10:29):
it's really important toremember how each one of these
children is able to learn andabsorb, and you know you can
teach him that in the classroomor you can teach him that
through play, and one of thosemethods is going to sit well and
one of them will not.
So I really think that justlistening to that story and
picturing him playing, he'salways done well with play
(10:52):
therapy of any sort, and I guessI kind of wanted to throw that
in there for everybody listening, just to keep an open mind
about the way that your childcommunicates, the way that they
will learn, because you're goingto learn the same way.
That's my experience anyway.
But what I do know is thatanything where you try to put
him in a box and make himconform to the way that things
(11:13):
have to be done, he doesn'tlearn anything and it's a
nightmare.
Jason (11:17):
Yeah, so that's right.
You're looking basically forclues.
You pick something, anythingand you interact with it.
You're looking for a way tobecome a more effective
communicator.
It's a way to gain insight intothat mind.
It's got a lot of potential tohelp build skills and be able to
identify things if you makethem.
(11:37):
The whole learning processbecomes fun if it's intentional.
Shannon Chamberlin (11:42):
When you were going through the early
days of getting him diagnosedand then learning how to
communicate and learning thethings that the experts you were
working with were able to passon to you, did anyone that you
were working with tell you thatanything would always or never
happen with him?
You know what I mean.
(12:02):
This is never going to work.
This will never happen in hislifetime.
You can never expect to seethis from him, or this is always
going to be a constant with himfor the rest of his life.
Was there any of that?
Jason (12:14):
No, I don't believe.
So.
I really don't recall anyoneputting any limits, you know, on
what he was going to be able toaccomplish or anything like
that.
Shannon Chamberlin (12:25):
The reason I asked is because when we first
met, one of the things that wetalked about was that you felt
that he knows who you are, butif you just disappeared, he
wouldn't really know thedifference.
And I was just wondering ifthat was something that, as a
father dealing with this, ifthat's just something that was
(12:48):
deep in your heart and soul,that you felt an absence of it,
or if that was something that aprofessional maybe planted in
your brain and said that.
Jason (12:57):
Yes, that was something that I thought about at times.
I think that there were acouple of factors that kind of
made me wonder about that, oneof which you know how some of
these individuals on thespectrum they not only was he
able to look everyone in the eye, but he would jump up on your
(13:26):
lap and give you a hug and akiss if he just met you.
He displayed the same affectionfor absolute strangers.
He treated them just like hetreated me.
So that was one of the thingsthat probably made me wonder
about that.
Also, there were things that Ithought were interesting, like
his first day of school.
I was just terrified and acomplete mess, and I know this
(13:50):
is normal and everyone canrelate to this.
But yes, it's like he didn'teven realize that I left.
When I got there to pick him up, he never really cared.
He didn't show that he cared ifI was there or not.
So it kind of made me wonderand, as you know, he was eight
years old before he said daddy'shome.
Was he seven or eight, six?
(14:11):
Yeah, daddy's home, you know,six years old.
You know, I always kind offantasized about hearing that.
And you guys worked all day onit one day and brought me to
tears when I came home one day.
Shannon Chamberlin (14:22):
So yeah, I remember that.
Yeah, I just couldn't let thatsadness go on for very long.
Once I learned that that wasthe consensus, like no, no, I
can't accept that.
And he did.
He allowed me to teach him that.
That was really cool.
I wonder if they knew back thenhow prominent OCD is with
(14:44):
autism, because while you weretelling that story, I was
thinking about how absolutelyobsessed with you and your
presence he is now, and that ofcourse, got me thinking about
how obsessed he can be with alot of different things.
But it didn't show up for along time and you know we can't
go back and ask those people now, but it just it did cross my
(15:06):
mind.
I wonder if they knew that thisautism is compounded by all
these other isms in the psyche.
I guess it is.
Did they mention anything toyou about stuff like that?
Jason (15:17):
No, I don't think there was too much on that, you know,
such as OCD or insomnia.
I think part of that is becausethe epidemic of autism was
still in its infancy Then.
I think that the people todayare a lot more educated than
they were in the late 90s.
I'm going to say this I mightbe off a few, but it was like
(15:40):
one out of 96 kids werediagnosed Within a few short
years.
It was one out of 50.
So, and it all happened very,very quickly, so they probably
are a lot more aware today thanthey were back then.
Basically, it was a learn asyou go thing.
When it came time for him to goto school, they had no idea
what to do for him.
What are we supposed to do aseducators, as parents?
Shannon Chamberlin (16:02):
That actually leads me into my next
question.
You mentioned that the firstday of school you were really
freaked out, but he didn'treally know the difference of
anything.
When did you first realize thatyou were going to have to
advocate for a?
Jason (16:19):
special type of education for your son.
Right off the bat they didn'tknow what to do.
They told me they never actedlike they had experience with
autism.
This was at the HomewoodHeights School in Creve Coeur in
Illinois and that's where theprogram was.
So they're basically theirhands are up there like I don't
know and I'm like, ok, well, hehas autism.
I made some calls around toother districts and asked them
(16:41):
hey, do you have any kids withautism?
What do you do?
They were very friendly and Itold them my situation and they
said well, come by, take a look,ask any of the questions that
you want to.
You know they were kind ofgreat about that.
I went to three differentschools.
I saw things like PECS, thepictorial schedule curriculum
thingy.
You know that they let kids onthe spectrum have a picture of
(17:02):
the next activity.
It was very good.
It eases the anxiety by thekids always know what's coming
next.
They have a visual cue this iswhat's next.
They're never in limbo and youknow whether they're looking
forward to it or not.
They know it's coming andthat's comforting.
That's one example.
There were light issues, audioissues.
You know different things thatthey do out of regard for the
(17:26):
autistic and special needsprograms.
So I basically took what Ilearned from these three schools
.
I brought him back to hisschool and said, okay, this is
what they're doing and why, andthey incorporated it.
Yeah, jacob was the first one,and when Jacob left that program
, they had a fully functionalprogram that was appropriate for
kids on the spectrum that weresensitive to you know, the
(17:49):
lights, the noises, everything.
Shannon Chamberlin (17:51):
Just a quick curiosity question how would
you compare the reception ofschool faculty back then to your
request to incorporate thesethings that your child needs?
Compared to the reception ofschool faculty in more recent
years, do you think that therewas more of a willingness to
work with you and your son onhis needs back then?
(18:14):
Or do you know what I'm saying,because we've experienced a lot
of roadblocks and walls up andthings like that in the recent
past as he has gotten older andthe rules for educating him have
stayed the same.
So was there resistance backthen, or how do you?
How would you gauge that?
Jason (18:30):
I would say in the very beginning there wasn't any
resistance at all.
I think that there is somethingvery valuable in understanding
that you know nothing.
That way, you are very, veryopen to learning what did happen
.
Let's fast forward to 2010,2012.
Now you have so many peoplethey over and misdiagnosed
autism that too many educatorscome to the table with they've
(18:51):
already made up their minds.
They think they understandautism.
Make, when you are dealing withan individual, is you think,
because you met someone elsewith autism, that you understand
autism?
That's the biggest folly.
From the beginning, you alwayshave to understand that every
individual is different.
There are some common threads,but they are so different from
(19:14):
each other that you at leasthave to empty your cup of what
you're prejudging and everythingelse like that, so that you can
accurately observe what is infront of you, unbiased by your
previous experience, becauseyour previous experience is
going to serve you very little.
As human beings, we try tocompress things into boxes so
that we can understand them andwe can relate to them, and you
(19:35):
cannot do that with autism,because it is a spectrum and too
many people think too much oftheir abilities to be able to
relate to them and that closestheir minds off to, you know,
important cues and lessons thatthe individual with autism is
actually is sharing ordisplaying.
So I think that's probably oneof the biggest things is back
(19:57):
then it was new, no one had aclue.
Everyone knew they wereclueless.
Fast forward, many educatorsthought because they went to a
seminar and learned what thedefinition of autism was and
shoved it into this very genericterm.
And this is what we do.
They think they have a handleon it.
Explain it so well, but it'strue.
Shannon Chamberlin (20:23):
It's my opinion that the biggest pain
point is that it is anindividual.
It is the autonomy and theindividuality that is still
existing and is very much alive,and it's just, it's bundled up
inside of this severe autism.
It's covered, but thatindividual is still trying to
get out.
And then these people theythink well, I learned the
definition and I learned howeveryone thinks that most of
(20:46):
these kids learn and that's whatI'm going to do.
And then they stifle theindividual and now they're not
helping anything at all.
These poor kids.
They're just, they're not beingconsidered as humans anymore.
Jason (20:58):
Yeah, the biggest thing with the education system is the
fact that it is a cattle call.
They heard the kids and teachthem all the same things and
when you have class with five,six different autistic kids in
it, you have five, six differentways you have to approach and
communicate.
That's what happens later on.
Probably where educators areoverall at now is they may think
(21:21):
that they have a grasp on whatthey need to do, but how
counterproductive that can be.
I mean we went from I went inmy personal experience to
educators who were veryinterested, they were very
engaged to learn about this thatthey had no idea about it 12,
13, 15 years later.
Not only do you not have thatadvantage, now you have teachers
(21:41):
that don't even listen to theparents.
Okay, because they're educatorsand they've been educated on
autism and they know exactlywhat they're doing.
You remember the notebook?
They stopped followingdirections and then they start
to wonder why they're having somany problems because they
stopped listening to me on howto get the best behavior out of
Jacob.
Shannon Chamberlin (22:01):
Right, yeah, In my podcast here I call that
parent law.
And they don't.
Even when you point out themistake and tell them the
reasons, they think they knowbetter and it really is
maddening.
So if any of you are goingthrough that out there, you're
not alone.
As you mentioned, it is aspectrum.
It is widely overdiagnosed,possibly misdiagnosed, and, as
(22:24):
I've mentioned in many of myepisodes, we never knew that our
son had severe autism untilmany, many years later.
How far do you think they'vecome at the schools for this
type of autism, or is there evenan answer for that?
Jason (22:37):
I'm really not sure, to be honest with you, if there's
any difference at all.
Now it's been a few years sinceJake's even been a student, but
I can tell you that overall Isaw no progress for the last 10
years.
He actually was at school.
Yeah, I saw very little.
That you know.
Jake needed a personalassistant basically at all times
, you know, and that's, you know, really a stretch for these
(23:00):
schools, you know, to be able toto do that for every single kid
.
I didn't see a lot of kids likeJacob in any program at any
school.
I mean, it's almost like evenfor being autistic he's
exceptionally autistic.
So that was very challenging foreducators, you know, because
they they have to have thisfeeling like they know what
they're doing.
They have to have a feeling ofsome direction to take with
(23:22):
quote, educating this person andnot enough of just observation
and being around.
I think that the mostoverlooked thing that kind of I
would call it an elephant in theroom, but I don't even know if
most people even understand thatthere's an elephant in the room
but that elephant is energy,that there's an elephant in the
room but that elephant is energy, the most important thing for
educators or anybody tounderstand when you are dealing
(23:42):
with someone who has severeautism is that they are very
sensitive to energy.
They are going to pick up onyour energy.
You can't BS them the way thatyou can other people, because
they communicate on a differentlevel.
You know they really do.
We've seen this with Jake timeand time again how sensitive he
is to energies.
So if a teacher is going tohave a smile on her face but
nothing but funkiness on theinside like I can't wait for the
(24:03):
bell to ring, you know, orshe's already thinking about
something else or whatever, andthis, and that no matter what
she's saying, how it's beingreceived, you can't hide that
they're very sensitive toenergies and it takes a very
special person to deal with themin an academic environment and
people to realize that you know90% of that is going to be just
to be present and observed,because they're all enigmas,
they're all, they're allmysterious, they all have a code
(24:26):
and you have to crack that.
That's the idea.
That was the idea with the playproject and everything else is
you're looking for clues, cluesto help you communicate.
Shannon Chamberlin (24:32):
Yeah, I agree, and I thought that we
shouldered a lot of theresponsibility of helping them
understand.
We never wanted them to gothrough.
You know, like you're justdriving along on dry pavement
and then all of a sudden you getstuck in the mud and now you
can't get out of it.
You're spinning your wheels andthe kid's on the other side of
the big mudslide and you can'tget through it.
And we didn't want education tostop for our kid or the other
(24:56):
kids around him.
So we, I feel, shouldered a lotof that burden and went to each
educator and gave them theplaybook.
We gave them the playbook, andnot only that, but we advocated
for more therapy time in school.
They were unable to providethat, but the reason that I
think that therapy was going tobe important is because they're
(25:17):
still observing the child.
The teacher doesn't have timeto observe.
They need to rely on the peoplewho observe the child and
provide therapy and learn how tocommunicate and sometimes that
communication has to change dayby day.
But they can at least add tothe playbook and then give that
back to the regular teacher andsay this is how you work with
(25:39):
this kid.
But I really did feel that wetried to eliminate the getting
stuck in the mud.
We tried to eliminate a lot ofthe problems that we foresaw and
they were very non-responsive,not interested in receiving that
information.
Jason (25:54):
Patience is the biggest thing that they lack.
Not patience today, but thelong view of patience, patience
to build a rapport over sixmonths or a year, of just being
next to a nonverbal or veryspeech delayed, autistic person.
That's what's missing.
(26:14):
Everyone's in a hurry.
You know everyone wants to havean IEP and we want to meet
these benchmarks and we want tomeet these goals.
They're obsessed with progressand while I agree that it's
important to be able to maybedraw some lines like you know
okay, we expanded our vocabularyfrom five words to 20 words
that progress is great, youcan't force it and if you do,
(26:36):
you're going to bring forth anenergy and a behavior that is
counterproductive.
I always started every IEP.
Every time I sat down withsomeone new that was dealing
with Jacob and I always told himthe story, the same story, and
it was the story of when we wereswimming in the pool.
One year, for the longest time,he loved me to put a life
jacket on him and pick him upand throw him in the water.
(26:57):
He loved it.
He loved it.
He loved going under the waterand popping out like a bobber or
a cork the next year, insteadof us getting into the pool and
swimming around and having funand working up to that.
I tried to pick up right wherewe left off.
Well, he kind of forgot abouthow much fun that was.
And I kind of freaked him outbecause when the pool was open I
put the life jacket on him andI picked him up and I threw him
(27:19):
in the water and I was expectinghim to come up and to be
laughing and cheering the waythat he was, you know, five
months, six months ago, whateveryou know and he didn't
appreciate it at all.
He got very upset.
It was like what the hell areyou trying to do to me?
And it was two and a half yearsbefore he would let me get in
the pool with him again.
(27:39):
If I sat down on the oppositeend of the pool and put a toe in
the water, he would get out ofthe water and wait for me to get
away from the pool until he gotback in.
And it was two and a half yearslater when we finally was able
to swim together.
I about cried.
I didn't know if I was evergoing to be able to go swimming
with him again.
Two and a half years went by.
We together.
(28:01):
I about cried.
I didn't know if I was evergoing to be able to go swimming
with him again.
Two and a half years went by.
We were at a hotel.
You remember that day?
Yeah, I try to explain that tothese educators.
If you upset him, if you betrayhim in any way and he knows and
he will not come here, he willnot.
No one will hold a grudge likethese kids, and they don't even
know the meaning of the word.
But if you burn them, you haveburnt them forever.
Shannon Chamberlin (28:17):
Yeah, absolutely, and that's a great
story to tell to anyone who hasnever met him and who has to
plan on working with him for,you know, four to seven months.
It's a shame that no one wantedto listen.
I have told that story a coupletimes, not to the detail, but I
was just thinking.
I think we were at Chula Vistawhen he finally warmed up to you
.
We were traveling for work andwe were there for a couple of
(28:40):
days and we were down at thatpool for hours and he would not.
It took almost the entire stayat that hotel before he allowed
you to be in the pool and I doremember you got your toe in
there and then you got yourbottom of your leg in there and
he had big eyes looking over hisshoulder while he was trying to
(29:02):
run away and get as much waterbetween you and him as possible
and he was going for the ladderin the deep end while you were
getting in the shallow end andit was an ongoing process and
finally he allowed you to comeup and give him a hug in the
water and pick him up, and thatseemed like more than two and a
half years to me, but yeah, itwas forever, and that process of
(29:26):
watching him warm back up tothe idea of the person in the
world that he trusts the mostwith his life and with
everything in his life could notget close to him in his
favorite part of life, which isthe pool.
That was really hard for me toprocess and I wonder if the
grudge holding that youmentioned is maybe because he is
(29:46):
also very aware of his sensoryprocessing issues and he felt
perhaps let down by the peoplewho he has put in place to guard
him against these sensoryprocessing issues and so he had
to throw up a wall.
And maybe that's what it reallyis and we think that he's
holding a grudge, but he's justtrying his best, the only way he
(30:07):
can think of, to regulate whatgot shattered a little bit for
him and I'm really glad he gotover that.
You can run his whole life bythat story, absolutely.
Jason (30:16):
Yes, I think it offers a clue, it offers an insight and a
glimpse into the way that hethinks.
And it's important for us to dotwo things at the same time.
And it's challenging becauseyou're not always going to be
perfect, you're not always goingto have inexhaustible energy,
you're going to hit exhaustion,you're going to hit every kind
(30:39):
of emotion and you're just notgoing to have time for the
bullshit.
At the same time, you have tocheck your energy.
You have to try to not projecta funky, funky energy that they
can feel.
You know it's a very, verytough thing to accomplish
sometimes, because we're notperfect.
They're all different and noneof them come with an owner's
(31:01):
manual.
It's important to learn aboutthe energies that they thrive on
or that upsets them, so thatyou can kind of curve yours to.
You know, have a productive day.
You know, sometimes it'simportant.
Just okay, this is where I'm attoday.
I need to recognize it.
I don't have it today.
I'm not going to be able to dothis.
I'm not going to be able todance for you all day.
(31:22):
I can't sing and dance for youall day.
Today I can't do it.
Shannon Chamberlin (31:25):
And then you can take some sort of
appropriate measures tosafeguard your own sanity me and
I was not growing up withautism, but it always irritated
me when I was a kid and I wasinsulted by it.
But it's the absolute truth thatit's not my job to entertain
you and he actually he feels thesame way I used to when she
(31:48):
would tell me that you know, alittle insulted and like, well,
yeah, it is your job.
I mean, takeaway on that is thathe will absolutely exploit the
energy that you're trying tohide.
You mentioned earlier about ifsomeone is, you know, trying to
hide everything and wearing asmile on their face, but in
their heart they're feelingangry or pessimistic in any way,
it's not going to work and Itruly believe, especially with
(32:11):
Jacob, that he will exploit that.
I told the story a long timeago about us being at the state
park and the old ladies cominginto the water with their done
up hair and not wanting to getwet, and as pretty as they
looked and as nice as theylooked on the outside, he could
read their energy that they werepissy about him splashing
(32:33):
around in the water in aperfectly public lake where he
has every right to splash, in aperfectly public lake where he
has every right to splash, andthat is one example of him
exploiting that negative energythat he's feeling from someone
he doesn't even know, andhopefully you guys can pass that
on to anyone who will bedealing with your children, if
you haven't thought of italready.
Jason (32:51):
Right.
I don't think it's wise to setyour expectations too high for
compassion from theseindividuals.
They will club you like a babyseal and you know, not think
anything of it until you areabsolutely shattered, and then
they'll receive that energy andthen they will sincerely
apologize at times.
(33:12):
But I mean, you know, you gotto be broken to a million pieces
all over the floor and then allof a sudden they'll get happy.
Yeah.
Shannon Chamberlin (33:23):
Or he'll apologize sincerely and go
upstairs and create another hellmess for you, that he'll just
keep it quiet until he thinksyou're ready to know about it.
The next couple of questionsare a little more heavy and
maybe a little more triggeringfor people.
So I'd like to close thisepisode with a recent birthday
(33:43):
story and a message of gratitude, and we'll move the remainder
of this interview with Dad intomy next episode that comes out
next Wednesday.
If you are in the United States, you're in the time of
Christmas right now, and this isa challenging time for almost
all of us in this boat.
As you know, we just had thisissue with the what do you want
(34:05):
for your birthday?
Because our son's birthday wasjust the other day.
He just turned 24.
This is kind of compounded onus.
It was a very hard day on the19th for him to turn 24.
He did not want any part ofthat day.
It was a nightmare of a day.
I cried almost all day and Iwent to bed early, and then it
kind of even affected me intothe next day, which was
(34:26):
yesterday, you know.
And then we have Christmas Now.
As you know, we don't doChristmas, and that's largely
because of Jacob's preferencesand behaviors and I have come to
learn to be grateful even forthat.
I'm grateful now that I don'thave any Christmas decorations I
don't even have any and I don'teven look at them and I don't
(34:47):
even care.
And I'm grateful because I haveJacob and he keeps me very busy
.
And if I had to deal withfinding my decorations, putting
them up, fighting him and myprobably my husband about the
decorations and then rememberingto take them down at the right
time and put them away nicely,while also still having to take
(35:07):
care of my motherly duties, youknow, I just don't think that's
for me and I think that Jacobdid me a favor.
And so if you're in this boatand you're a little bit sad, you
know it is the holiday, ormaybe your kid did just have a
birthday and they don't know anydifferent, I'm sure you can
find something.
You know, maybe it's a blessingthat your child doesn't know
(35:27):
that their birthday is supposedto be special.
Maybe you know, because what'sthe alternative?
The alternative is a kid whoknows exactly how old they are
and exactly what all theirfriends did for their umpteenth
birthday, and you're not able toprovide that for them.
So I mean, there's alwayssomething, and I'm grateful that
he doesn't have these greatexpectations for me to live up
(35:49):
to.
He didn't expect me to give hima car when he turned 16.
He didn't expect me to allowhim to go out drinking and
roadloading with his friendswhen he turned 21.
No, he didn't even want me toallow him to go out drinking and
road loading with his friendswhen he turned 21.
No, he didn't even want me tocelebrate his birthday the other
day, Okay so hey, thanks, kid,you know, because I was having a
(36:13):
hard time of it.
So it all worked out.
You know I am grateful forthese things they do.
If I concentrate on them, yes,they get me down, they make me
sad.
I love Christmas lights, I loveall that stuff, but I love my
sanity more and I'm not going todwell on all this stuff that I
can't have and I can't dobecause my kid doesn't like it.
I know what he doesn't like andI'm grateful for that, because
why fight it?
I know that he doesn't likepictures of his half sister
(36:36):
around the house.
Can't have him on the wall,okay.
So guess what?
No pictures.
I know he doesn't like messingaround with Christmas ornaments
anymore.
Okay, no more ornaments, youknow.
At least I know what he doesn'tlike.
I remember several holidays agowe actually came here from
Wisconsin we were still doingChristmas, so we came all the
way here.
Everyone was happy to see eachother, everything was going
(36:56):
great.
We kind of mixed his birthdayand Christmas all together.
For all of us neurotypicals itwas a really great day, but
Jacob didn't want any part of it.
He sat there on the couch andscreamed and whined and cried
and doom-voiced and just stomped, and he just did all the things
that you would not expect himto do during a happy moment
(37:18):
where he's getting showered withgifts and we didn't know what
was wrong with him.
Why is he being like this?
This is everything that hewants.
His family is here.
He's the center of attention.
We're trying to be not likeoverly attentive, but we're
giving him everything that heever wants, because he wants to
be on display.
He wants everyone looking athim, kissing him, hugging him.
He wants all the presents.
(37:38):
We're doing all of the thingsand he's very unhappy.
Well, about three hours later wewent to bed.
His grandpa comes and knocks onour door and says you need to
get out here.
Well, Jacob had puked all overthe house.
He was sick.
We didn't know it.
So I'm glad and grateful when Iknow what he doesn't like.
I know why he's acting the waythat he is.
(38:00):
I know how to observe him whilehe's doing it and try to figure
it out.
I know that he needs me tofigure it out and I'm grateful
for all of this knowledge.
Turns out we all got sick.
It wasn't anything that we ate,because we all ate different
food that day and while I wasgoing down the stairs to try to
take care of him, it soundedlike there was a freight train
running through my head and Icouldn't even walk.
(38:20):
I couldn't even keep my eyesopen because I was so dizzy and
it was so loud in my head.
And then within an hour myhusband was sick on the floor.
I mean, we were all messed up,but Jacob was sick.
That's what was going on.
It wasn't anything to do withanything else.
He just didn't feel good and hecouldn't tell us.
So I just wanted to tell youthat story, to let you know that
(38:41):
you are being blessed when yourkid is able to show you that
they don't like something.
Maybe you do have to take itout of your life.
Maybe you do have to put alittle display up in a private
room of your house so you canenjoy it, but that's okay.
At least you know, at least youdon't have that building thing
that is just going to fall allover you and disappoint you.
There's definitely something tobe grateful for in every little
(39:03):
lesson that you learn.
I hope that helps you as you gothrough this Christmas holiday.
Thank you so much for joiningme and my husband in this
special episode.
You hang in there, you're asuperhero.
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