November 20, 2024 • 42 mins
Navigating the intricate world of parenting a child with severe autism can be both challenging and rewarding. As a parent, I've experienced firsthand the profound impact external factors like supermoons can have on his behavior, and the importance of understanding these triggers. Through personal anecdotes, I unveil the struggle of handling well-meaning yet sometimes insensitive comments from family, and how I've empowered Jacob to assert himself in such situations. It's all about finding effective strategies to manage everyday challenges, such as thunderstorms, and teaching our children to navigate through life's unexpected events with strength and confidence.
Engaging with a child who has a deep affinity for media can be a complex endeavor. My journey with Jacob showed me that traditional methods, like cartoon-based social stories, often missed the mark. I share the insights gained from understanding Jacob's unique individuality and the broader implications for educational systems that struggle to accommodate neurodiverse children. We explore the necessity of shifting perspectives to better support these unique minds, while highlighting the humor and lessons learned from Jacob's adventurous spirit, from his innocent "I need sock" incident to his fearless exploration of potentially dangerous situations.
The podcast also touches on the emotional sacrifices and personal dreams often altered when raising a child with severe autism. I invite listeners to reflect on their own narratives, fostering a supportive community where shared stories become a source of solace and mutual strength.
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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 Shannon Chamberlin.
I'm so happy that you're herewith me today.
For more information about eachof these episodes, you can head
on over to psabuzzsproutcom,where you'll find the transcript
, show notes, contact, email,social media page, coupon codes
(00:42):
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
(01:05):
specialty foods for their lovedone.
We're just coming off a fullsupermoon.
How did you guys go with that?
Ours was great.
Our son decided to scratch thehell out of his face it's
probably one of the worstscratch-up jobs that he's ever
done to himself followed bybanging his head on his favorite
door jam repeatedly and veryfast.
(01:27):
I can't believe how fast he isat that.
He's like a woodpecker, butwith his head, and he followed
that up with some kind ofmystery bruise.
Probably during the samemeltdown.
He has this huge, huge bruise.
Looks like he got hit with agolf ball on his forearm and he
can't even point out what partof the house did that to him.
He has no idea.
So, yeah, that was great.
(01:47):
And as soon as I mentioned inone of my recent episodes about
how we'll tell him you can'thave pizza if you're not going
to be good, and all that, andhow he would straighten right up
, as soon as I told you guysabout that, he stopped
responding to that, so that nolonger works.
I should never have mentionedit, because it used to work like
(02:08):
a charm.
Now he doesn't care, he'll justdo whatever and expect positive
results no matter what.
So thank God for that supermoonbeing over, and I can tell you
you have 12 months beforethere's another supermoon.
We're always going to have thefull moons, but we'll go without
a supermoon for a full year,and it's been our experience
(02:28):
that the supermoons are evenworse than the regular full
moons.
So I am looking forward to alittle bit more calm over the
next 12 months of lunar cycles.
Anyway, the order of thesestories may be a little erratic.
It's just because there arecertain things that I forget and
then I realize them later and Idon't want to miss them.
(02:48):
So I include them and hopefullywe can all keep up with each
other here.
I wanted to mention I think Imentioned it in one of my other
episodes, but since I wastalking about our fire pit and
us learning about the traumathat our boy went through during
those two months that wethought he was safe with family
while we were readying his roomand the new house and everything
, another thing that happenedduring that time was our son
(03:12):
kept whining about I'm notspecial, I'm not special, and
obviously that prompted us to dosome digging because yeah, he
is special, right, so why is hebothered by that enough to start
crying and repeating it?
He never had a problem with anyof that before.
So we learned through ourinvestigations that during the
(03:33):
two months he was with thegrandparents, when the
grandmother was awake and doingthings with him, what she was
doing was parading him around atchurch, putting him on display
like a zoo animal and tellingeveryone how special he is.
And I think after three to fourdays a week of hearing that for
a couple hours at a time, itprobably really started to wear
(03:56):
on him and it affected himnegatively.
So he no longer likes to bereferred to as special and it
was because of her actions, justher seeking that ego feed from
her peers at church.
She had to show everyone what amess he was and what a saint
she was for even hanging outwith him.
You know what I mean.
And it just wasn't fair to him.
(04:18):
So that was something too, andyou may have picked up by now
that I am aware that there are alot of things in this world
that we cannot avoid, even if wewould like to for our children.
There are just things likethunderstorms.
You know they're going tohappen and he's either going to
freak out about them all thetime or I'm going to try to help
him learn ways to cope withthem, and you might remember
(04:38):
that I did try to help him copewith storms.
He's a lot better at them nowthan he used to be, and I really
believe it's because I try tohelp him cope in the best way
that I can.
And he really likes just likemost of our kids, he really
likes that loud, over the top,overdramatic kind of stuff.
So I always taught him to shakehis fist at the thunder and
(04:59):
lightning and yell if thethunder scared him or the
lightning flashed and then therewas a big crack or boom if it
struck something.
I always taught him to justshake his fist and yell back and
just tried to give him a senseof empowerment through that, and
that's the only thing I reallyfeel that I can do for him with
these things that are constantin life and you can't get away
from them.
So what I taught him aboutpeople parading him around like
(05:23):
an exhibit and talking about howspecial he is, if he didn't
like it, I told him that heshould say he should.
I told him basically that heshould give him stink face and
shake his fist at them and sayI'm not special, you're special
to the best of his ability andhe really likes that.
He loves having permission togo off on somebody.
I mean, don't we all Right?
(05:43):
He loves having permission togo off on somebody.
I mean, don't we all right?
So that was the thing I taughthim about grandmother or anyone
else parading him around andsaying, oh, he sounds special,
look at him.
And what they really mean islook at me, look how great I am
at his expense.
So screw that.
Anything that is done at myson's expense I'm going to teach
him, to teach them a lesson youcan tell it's from me.
(06:06):
It's so funny to hear thethings that come out of his
mouth, even if I'm not trying totrain him or teach him
something, because he has spentso much time with me in his life
that he's basically an echochamber of me and it is just so
funny.
The other day he came into thekitchen for something and it was
completely out of context,which made it even funnier.
But he just came into thekitchen and he said hi or
something, and then he goes wow,okay, that's been one of my
(06:31):
things lately, I don't know.
It's just really funny to me tohear him echoing me and letting
me know what he's picking up onDuring that first year of
school this is where I left offin the last episode is the
influence of that first year ofschool.
So during that first year ofschool, aside from dealing with
(06:51):
the cigarette smoke in his faceand the weirdness of getting off
the bus and collapsing into thegravel, these things happened.
He came home from school oneday and I honestly can't
remember if there was an emailcommunication or telephone
communication in addition to anote sent home, but somehow it
was brought to our attentionthat our son kept sticking his
hands in his pants, as I toldyou, he loves to pinch the bean
(07:13):
right and that's like hissecurity blanket, and he always
wore like jogging pants,something with an elastic
waistband easy on, easy off,easy on the autism, and it was
just his thing.
He likes Velcro shoes,sweatpants, jogging pants, easy
clothes that are not too tight.
You know what I mean.
But apparently it was insulting.
At school the teacher said oh,he keeps sticking his hand in
(07:34):
his pants and I tried to do asocial story with him and I want
you to do social stories withhim.
And instantly, I mean I canprobably see the look on your
face right now, because that'sthe one I had.
Oh, okay, a social story reallyFor this kid.
Okay, sure, yeah, he's reallyconcerned with you.
(07:55):
Know, the social impact ofthings, right, but I had never
thought of it before and Ithought, well, I can't rule it
out.
Maybe they know something thatI don't, maybe I'm being close
minded here, maybe I don'tunderstand this kid as well as I
think I do, because you know,I've mentioned before people
used to ask me how's it goingwith him, how is it okay, how
are you doing being his mom?
(08:16):
And these are people thatwatched him grow up from a baby
and I always said well, I knowthat everyone thinks it's
supposed to be hard, but I mean,really, I feel like he's my
sole child.
You know, we are good, we getalong great.
I came to realize that a lot ofthat had to do with his
involvement in media.
You know, he was always veryentertained and in his own
(08:38):
little world and I did try topull him out of it and interact
with him, obviously teaching himabout you know words and
daddy's gone and daddy's homeand that kind of thing, and
trying to get him to acknowledgethe world around him.
But I also allowed him a lot offreedom to do YouTube and
whatever he wanted to do,because it made him happy.
(09:01):
But I was trying to build abusiness at the same time.
So once I realized that, Ithought, well, maybe I don't
know, maybe it's not as easy,but I was trying to build a
business at the same time.
So once I realized that, Ithought, well, maybe I don't
know, maybe it's not as easy asI think, maybe I'm doing it
wrong and maybe he's spendingtoo much time.
You know, anyway, you canalways second guess yourself.
However, back to the socialstory thing.
I thought, well, I better tryit.
So he came home and I said,okay, well, let's have a snack
(09:24):
and you can come on in here.
And I brought him into theliving room there and sat him on
the couch and I got on the TVand got on YouTube and tried to
find social stories.
It was a huge slap in the facewhen I did this and this was a
pivotal moment in parenting forme, because social stories if
you go and look on YouTube forsocial stories they are very
(09:46):
much little kiddish, right, andour son is very much a little
kid, no matter how big he gets.
So I thought, yeah, okay, thisis probably right up his alley.
I mean, he loves cartoons, heloves Disney, he loves all of
these childish things.
So he was what like 13 at thispoint, right.
And okay, yeah, let's try this.
(10:07):
And you should have seen thelook of insult on this child.
He was so insulted that Ireally think that he was
insulted, that I thought solittle of him.
I guess that I would make himwatch something.
So far beneath him.
I was shocked.
I really didn't expect that.
He threw a fit and he gave mestink face.
(10:30):
You know what I mean.
So I thought, oh shit, thisisn't going right.
So, okay, well, let me try tofind something else.
And I was scrambling, trying tonot acknowledge because I
didn't want it to get worse thisimpending meltdown that I
thought was going to happen.
So I didn't really want toacknowledge it, but I did at
least let him know.
Okay, you don't have to watchthis, give me a minute, bear
(10:51):
with me, I will try to findsomething better.
So I found this kid, and Jacobused to call him a little brown
boy.
That's just the way he does it.
Everything has a color.
So I cannot find him.
I've been looking for days.
This was years ago, so I mean,obviously he's grown now, but he
was adorable and he wore thislittle suit and tie and I think
(11:14):
he stood in front of ablackboard and he made these
cute little videos.
I feel like some of them weresocial stories, but what I was
looking for was a human insteadof a cartoon character, because
I felt like that was whatoffended our son when I tried to
do these social stories withhim.
I think I did try to readsomething to him that they sent
home, but he didn't care andhe's more of a visual YouTube
(11:37):
kid anyway.
So I find this little boy andhe's doing these videos and I
tried to make him watch thoseand he watched it.
But he didn't care, he didn'treceive a message, he didn't
digest any of it, he justappeased me and watched it.
And I think the only reason hedid it was because it was a real
, live, human boy, not a cartoon.
(11:59):
I would try to regularlyincorporate that kid into our
daily television diet.
When he would get home fromschool I would try to find
something relatable and have himwatch it when he got home.
So that didn't work.
My instincts were right Socialstories are bullshit.
They don't work.
Maybe they work for some ofthem, I don't know.
(12:21):
But our kid doesn't care aboutyour social stories.
He doesn't care aboutconforming to what you think is
right.
If he wants to stick his handin his pants to have a security
blanket, then that's what he'sgoing to do.
He doesn't mean to offend you.
Is it his fault you're offendedor is it yours?
Who do you think you'reeducating?
Why do you think that he shouldfit in to the same box as your
(12:44):
neurotypical children thatyou're teaching?
Why do you expect him to behavelike a 13-year-old.
We have done everything that wecan think of to introduce you to
the child that you're dealingwith, speaking to the kids at
school, having meetings with thefaculty before school was even
in session.
I mean, we did everything thatwe could think of.
I sent an entire book about him, you know, and they're wanting
(13:08):
him to behave like a, like agrown person at this point.
And I I was insulted too After,you know, I thought it was just
me, I ran it by his dad.
When his dad got home and hehad the same reaction like, oh
okay, a social story, yeah,great, that'll work.
And we're not trying to have anegative attitude.
It's just that we know our kidand you know, we know he's not
(13:35):
going to fit into that, andthat's another thing that I'm
focusing on in that blueprintthat I told you about.
I'm really excited about that.
I'm going to go into that in alittle bit here.
I think we need to help our kidsdo what they naturally are
inclined to do.
You know Jacob, his spirit,he's raw animal spirit basically
, and while he does need to betamed a little bit, he's
definitely never going to fitinto the mold that everyone has
(13:58):
out there for him.
He is not interested.
So we're trying to deal withthat.
And since he was not respondingto social stories and he was
not responding to verbal cues,and he was just simply not even
responding to directinstructions, to stop doing that
, don't put your hand in yourpants, take your hand out of
your pants, leave your pee, peealone All of that stuff.
(14:19):
He was, you know, just like,hey, I'm going to do what I want
to do.
So our next step was to graduatehim from elastic waistbands to
pants with belts.
So his dad gets one of thoseand I never understood why, but
I let the clothing be betweenthose two, because his dad is a
man.
He was a boy once and I neverwore belts unless they were in
(14:42):
fashion with my Z cabarichis orwhatever.
So I don't have any experiencewith.
What type of underwear arecomfortable for a boy?
What type of belt is best for aboy?
I didn't have any education asfar as dexterity and stuff like
that.
I didn't know how a belt wasgoing to work, but we did know
(15:02):
that a belt was going to beneeded if we were going to move
past this and actually try toget our son some help in school.
So I let his dad handle thatand he got him one of those
little belts with the littlelittle slidey pin.
You know, not not a regularbelt where you can cinch it up
and punch new holes in it andstuff.
It was just it had no holes.
You just pull it tight and thenslide this pin into place and
(15:26):
there you go.
And you know, I can hardlyfigure out how to work those
things and I was reallysurprised for all the years that
he wore this belt, that that'sthe belt.
You know why.
I thought that we would go withmaybe something that was like
almost a macrame and you justput the little thing in there.
You know there's no real holes,you could just put it wherever.
(15:46):
And you know, I thought wewould do something like that,
but we went with the slideybuckle thing and it was the
strangest thing to me, but it'swhat his dad chose and I voiced
my concern and my surprise andwe stuck with it anyway.
So I thought, well, that'sbetween you guys, as long as
this isn't the focal point forthe next four years of school,
then you know, whatever, fine.
(16:06):
So cargo pants and this belt,and that was our answer to
always having to keep him out ofhis own pants during school.
The next thing we had toovercome was, within the same
short amount of time, he got aniPad from the Kiwanis people at
the school previous I think Imentioned that he's like the
only autistic kid there and theywere giving an iPad away to an
(16:28):
autistic kid and it just sohappened that we got it.
So he has this iPad.
I allowed him to use the iPadduring certain down times, which
was pretty much after school.
You know you want to come home,have your snack, watch this kid
on TV for a minute, if I canget him to do it, and then, yeah
, you can play with your iPadwhile I make your dinner.
You know there's not a lot oftime after school to do a lot.
(16:48):
Well, he starts getting intothese terrible sounds and the
iPad didn't have headphones oranything.
So all I heard was thisbreaking glass.
He loves the sound of breakingglass in videos and that's full
blast in the kitchen constantlybecause, as you know, that's
where he hangs out with me whenI'm cooking and he's just
sitting there listening to thisover and over, on full blast and
(17:12):
a half, and it's driving meinsane.
So I get some headphones and Itell him you have to use the
headphones.
And then he's using theheadphones in the same spot in
the kitchen with the same amountof volume and I can still hear.
And I'm like dude, you're goingto blow your ears out, turn it
down.
I mean he just has'm like dude,you're gonna blow your ears out
, turn it down.
I mean he just has noregulation of stuff, you know.
(17:33):
So that was really annoying,but it did work.
I designated an area where hecould sit and use it and I could
supervise him, becausesometimes, depending on what he
was watching, he would get realstupid.
In our townhouse he used to geton my desktop computer and he
found this real asshole guy onYouTube called Alcoholic
Spider-Man.
(17:53):
I think I might have mentionedthat because it was really bad,
terrible, terrible.
I hope that he's banned or shutdown or something.
I did the best I could toreport him, but back then it
wasn't as easy as it is today toreport stuff like that.
So anyway, I put him in a spotwhere I could always see him and
know what was going on and kindof monitor his emotions at that
point depending, and then Imight have to pull him off.
(18:15):
You know, or give him a newactivity is the key term.
So we would always have a newactivity and he relied on that
at school a lot.
That's where I got it from.
School had his whole daywritten out on a whiteboard and
he would go in and they wouldhave him read what they had
written down.
He would read the day, the date, the time, the weather.
He would do a weather reportreal quick and he would go
(18:38):
through and see how his day wasstructured.
Then he knew that, okay, afterthis activity that I really love
, there's going to be a breakand a new activity.
So we took that and use it athome.
I would just say, okay, timefor a new activity.
But it doesn't work unless it'smapped out on a board.
You can't just throw it at himthat it's time for a new
activity and I didn't know that.
(18:59):
So I learned that real quickand I made it on our whiteboard.
I made a little corner of itwith different choices for
activities and then you can do anew activity.
That ended up working prettygood.
But then I noticed that, even ifthe content he was watching
wasn't causing him to havemeltdowns or get weird at all
the length of time that he spentwas causing attitude problems
(19:24):
after he was done.
When would he be done?
Whenever I thought that it wastime to eat.
You know what I mean?
I was just I didn't know whatto do.
So I started having to not onlydesignate an area for him to
use the iPad, but I also had todesignate times for him to use
it.
And at school he got iPad forbreaks for his new activity and
(19:44):
a reward.
When I asked them not to usefood, they started using
technology and they would givehim the iPad as a break.
So I would have to mix it up alittle bit, but I had to give
him breaks on the iPad and onlyallow it, and that caused
attitude problems too.
But they didn't last as long asif I just had to, you know,
pull him off the iPad and puthim at the table to eat or you
(20:06):
know whatever.
So that was a huge learningthing for me, and I was doing it
all by myself because my spousewas out working all the time.
I basically would get up in themorning in the dark and get his
breakfast ready, get him off toschool, have coffee with his
dad, get his dad ready to go andhis dad would either go out in
the afternoon and all the wayinto the late evening to work,
(20:29):
or he would just have anappointment and he would go
somewhere between three and fiveo'clock.
So he was either not home whenour kid got home from school or
he was leaving within an hour ofour kid getting home from
school.
So a lot of the learning andthe adapting and all of this
stuff between me and Jacob wasall just me, all by myself.
I didn't have anyone to sharethe burden with or to share the
(20:52):
information with, and it justbecame, even when my spouse
would get home.
Instead of sharing information,it became just a real like a
bitch fest because things wereso bad and I didn't have anyone
to talk to.
And it was.
I just couldn't believe that hewas such a different kid for
his dad and I didn't think itwas fair that his dad would come
(21:13):
home and the next dayeverything was lovey-dovey
between the two of them and theboy hated me.
He was so mean to me.
So I would share with my spousewhat our son had done, you know
, and I just I had to save itall up.
So the poor guy.
He's out there dealing withpeople for our job and then he
comes home I'm like, hey, howwas your day?
Did you do a good job?
(21:34):
Did you sell?
Okay, now let me unload on you,because your son made my life
hell again.
There was a little funny thingthat happened.
You know I told you that Jacobwas getting into doing his
laundry and stuff with me, right?
So he learned that he hasunderwear and socks and shirts
and pants.
He has number one shirts andnumber two shirts.
Number one shirts are longsleeve turtlenecks and stuff
(21:54):
like that underneath, and thenthe number two shirt is the
second layer and because it wasso cold up there, we had to
establish that.
So he learned that he has socksand he came into my room one
time during that first year andhe was very unstable emotionally
(22:14):
at that time.
He went from being our happyboy all the time to just you
never know.
You never know.
He's either going to be happyor he's going to be just pissed
off.
He had to get up so early and Ididn't like waking him up and we
just wanted him to do things onhis own.
So his alarm clock goes off andhe's in there supposed to be
getting dressed and I was stillin my bed and he storms into our
(22:36):
room, has this real angry lookon his face and he says I need
sock.
And as an adult I thought thatwas hilarious.
I'm like you need what, what?
And he kept saying it and thenI think it was his dad figured
out he needs a sock or socks.
He didn't have any socks in hiscloset.
But he, I thought, where areyou learning this?
(23:02):
What are you talking about?
And for some reason that littlegiggle reminded me of something
else.
He had been learning money atschool.
At the previous house, the onewhere we were still in boxes.
They were teaching him moneyand they would pretend to do
like a store and they wouldactually take trips to a store,
to the local Walmart, and go andgive money to the cashiers and
(23:26):
expect money back, and they wereexpected to do this.
So he had this little classthat he would go and they were
all special in the class, butthey weren't like him.
And so we thought, well, that'sreally cute, let's do that with
him on our time too.
And we had this little cornergas station and they knew us.
The cashier knew my spouse.
She flirted with him all thetime and she ended up knowing
(23:47):
Jacob.
And so we're out in the parkinglot and his dad gives Jacob a $5
bill this was before we wentgluten and sugar free and he
says, okay, go in there and getyour candy and then give this to
the lady, wait for your changeand then come out.
And he okay.
So he runs into the gas stationwith the $5 bill and within 10
(24:07):
seconds he's coming back out andhe's got the $5 bill and the
Kit Kat Gangster the lady,didn't even come out.
You know we had to go back in,but she wasn't worried about it.
But that was the first and lasttime that we tried to have him
do what the school says he's sogood at.
I mean he really, you know hesure does perform for them, but
(24:27):
when we try to do it it's likehe's never done it before.
And then you start to wonder isthe school being honest with me
?
Are they telling me the truth,or are they just trying to make
themselves look good?
Because I cannot tell that he'slearned anything.
This doesn't even seem likehe's ever done it before.
What is this?
Is this a different child?
Is he a different person outthere.
(24:47):
You know, you kind of want tospy on him and stuff, and that
actually was the school where Iwas trying to.
But as bad as everything got, henever got karma.
You know, I've always been justabsolutely shocked and
(25:11):
surprised that nothing has everturned around and bitten him in
the ass the way that it wouldfor a normal person.
And what do I mean?
Well, there were times when Imean, we had a full flight of
stairs in there and it wascarpeted.
You know how dangerous carpetedstairs can be, stairs anyway,
right.
But the way that he acts onstairs and on things where any
(25:32):
regular person is going to losetheir balance, anyone who's
paying attention is going tolose their balance and fall and
get hurt.
He is not paying attention andhe's completely freaking out,
flapping his head, spinningaround, I mean just exorcist
stuff.
And he never, ever fellBalancing on the most dangerous
stuff in my opinion, going upand down the stairs and the
(25:53):
whole time just in full meltdown.
You know, and we I was alwaysnot we, me I was always there
and I was always like slow down,please slow down, don't do that
on the stairs, please get offthe stairs, please get away from
the edge.
Please get away from this.
Please get away from that.
You're allowed to have yourmeltdown, but please don't do it
.
Right there, I just was soterrified that, you know,
(26:13):
something was going to happenand it was just going to get so
much worse because it was verydangerous what he was doing.
But nothing ever happened.
And I started to think, man,would it teach him a lesson if
something happened?
I mean, does he need to fall?
Does he need something to scarehim into listening and
understanding?
Because, as you know, he's noteven afraid of cars.
But I never wanted that, youknow.
(26:33):
I just sometimes would wonderhow am I going to get through to
him that this is not safe foranybody?
Well, the other day he was toldto slow down because it was
raining and they have a woodendeck on the front and back of
the house and he has no regardfor that at all.
He's never fallen on the ice,he's never fallen off the stairs
, he's never gotten what wascoming to him.
(26:56):
If you're anyone else and youdo this nonsense that he does in
the nonsense places that hedoes it, you're going to get
hurt.
He never got hurt.
He never had what was coming tohim.
Well, just the other day thathe does it, you're going to get
hurt.
He never got hurt.
He never had what was coming tohim.
Well, just the other day he wastold please slow down, be very
careful.
Here's why it was illustratedto him and he went out there and
he busted his ass and hefinally learned.
(27:16):
I think that this is serious.
We're not joking.
It's not something we're justtalking to hear ourselves talk.
We actually care about yoursafety and we're telling you how
to navigate this and you needto listen.
So now he has a memorableexperience to reflect on.
When he starts acting like anasshole in a dangerous place
(27:37):
where we have warned him not to,it finally happened.
I thought, oh, his anointinghas run out.
He had that anointing on him,but not anymore.
I have a couple things for youguys.
I'd really like to hear fromyou if you have anything that
you would like to share on acouple different points.
First, I'm working on somethingreally big here behind the
(27:58):
scenes.
It's not just working on thefamily and doing a podcast.
I know that in one of myepisodes, or several of them, I
have mentioned something that Icalled the blueprint, and ever
since I mentioned that that waslike two years ago, maybe.
I see it everywhere.
Every company out there hasdeveloped something and they all
call it a blueprint and I'm alittle bit pissed off about that
(28:19):
, but that's okay because mineis not reliant on the name.
However, you know as hard as itis in this life.
My spouse and I we kind ofalready have the dream as far as
a complete family unit.
Many of you out there aresingle parents or you're
splitting custody or somethinglike that, and if you are living
in a family unit situation,you're actually not functioning
(28:42):
as two spouses with children.
You're just strangers.
And you know my spouse and Iare very, very lucky, but it's
still hard.
So, as hard as it is for us, Iknow it's even harder for you.
And if you heard my episodementioning the blueprint, this
is the thing I'm working on.
This is huge.
I am so close to marketing thisand I'm also very close to
(29:03):
finding places to create thissafe haven.
This is huge.
I want to ask you to contributeyour stories.
I don't have to share your name, I don't have to share anything
.
I'm getting together a few bitsof information, such as some
statistical facts about familieslike ours and kids like ours
and parents who deal with thesesituations.
(29:25):
But I'm also collecting stories.
Of course, I've got my ownhorror stories and I've got some
from other parents already, butI'd like to have some more.
Right now, what I am interestedin is you as the parent or the
caregiver.
I want to know how severe autismhas affected your plans for
your American dream or yourwhatever dream it is.
(29:48):
If it's not an American dream,whatever it is.
You know we are conditionedfrom the time we are young.
What do you want to be when yougrow up?
And if we're lucky, we havepeople putting us on the right
path and we are able to follow apath of education and
experience to get us to where weenvision ourselves when we grow
(30:09):
up.
If you're not lucky, thenyou're just out there flapping
in the wind and you have thesebig dreams and you're doing
everything you can to figure itout.
Either way, you're working yourass off towards a goal to better
your life, to provide for thefamily that you plan to have, or
to provide for yourself, if youdon't want a family, and you
are trying to achieve this bigdream and make it a reality.
(30:31):
So you have done the schooling,you've done the apprenticeships
, you've done the low totem polework, you've worked your way up
, you've gone to all theseminars, you've done all of the
projects and all of the reportsand all of the things.
You've gotten all of theaccolades.
You've graduated from all ofthe classes and all of the
colleges and you're continuingyour education and you're
(30:53):
working and striving towardsthis thing and you are an expert
in your field and you are man.
You are just on it.
You are ready to take on theworld.
You're going to have some kidsand provide a life for them, and
your spouse is going to be justso happy with you and
everything's going to bebeautiful.
What is it for you?
I would love to know.
It's very important to theproject that I am working on,
(31:15):
and this project is to provide acommunity for the community
that I'm speaking to right now.
We are so far apart, we are soalone, we are so unsupported, we
are so misunderstood and we areso at our wits end.
We're at war with the schools.
We're at war with thetherapists.
We're at war with the doctors.
(31:36):
We're at war with our neighbors.
We're at war with everyone whodoesn't care to try to
understand how our lives have towork.
I am working on something thatis going to provide respite for
people like us, safe havens forour children and us, healthy
havens for our children and forus, and they're going to be
(31:57):
exclusively for us.
So I need your stories, I needto know what you gave up.
I need to know how it hasaffected you.
What was your life like beforeyou had to make the decision to
stay with your child instead ofgoing to work?
You either are going to give itup and stay home and take care
of your kid because no one elsewants to deal with them, or
(32:18):
you're going to keep chasingyour dream and, in some capacity
, surrender your child to thestate when you made the decision
to stick with it and fight foryour kid and give up everything
you ever worked for andeverything you ever dreamed of.
What were you working for?
What was your dream?
Would you please tell me?
I would love to include it inmy presentations.
I'm creating something of a TEDTalk, even though I'm not going
(32:42):
on a TED Talk not yet anywaybut this is going to be huge and
it's going to be for us and I'mforming all the right things.
I'm doing all the right thingson the business end of it.
This is huge and it's important.
We need it.
You don't have to believe in it.
You don't have to want it.
Some of us do and some of usdon't.
And the ones who do, I'm goingto be so grateful when I'm able
(33:04):
to present you with this bigbreak for you and this community
.
It's awesome and I just I wantyour stories, so please email me
at contactparentingsevereautismat gmailcom.
Tell me what you wanted to bewhen you grew up, or tell me
what it was.
What were you doing?
Were you almost there?
Were you living the life?
(33:24):
Were you achieving your dreams?
Were you doing all of thethings that you had set out to
do?
Were you just right, on theright track?
Were you running a business?
Were you working with peopleand helping them?
Were you doing something andgiving to your community and
doing things that fed your soul?
What did you have to give up inorder to live the lifestyle
(33:45):
that you are currently livingfor?
Severe autism.
What are you good at?
What is your passion?
What are your talents?
Sometimes it's a good thing toreflect on that.
Anyway, being a caregiver forany kind of person starts to
become your identity if you'renot careful and I know that from
personal experience I almostforgot about everything that I
dreamt of.
So don't let it become.
(34:06):
I think I might need sometherapy on that.
I'm still in tears here.
Don't let it become youridentity.
Let's reflect on you.
What are you good at?
What is your passion?
What are your talents?
If you were in a communitywhere everyone was in the same
boat and was supportive of oneanother and understanding of
(34:26):
each other's needs for space andsensory deprivation and deep
breathing and all of the thingsthat we don't get If you were in
a community like that, whatwould it do for you?
This is huge what I'm working on, and it's not going to be for
everybody, because some peopleare already set in their ways
and they already have a greatplace and they already have
(34:46):
residency in a state where theirkid's about to be taken care of
and stuff.
But some of us are absolutelynot being helped and we are
consumed by this lifestyle andwe see no light at the end of
the tunnel, don't get tointeract with other people in
the regular world and we don'tfeel that we have any chance to
contribute or feel that we'reworth anything more than being a
(35:09):
slave to our children.
A lot of us are not in healthyrelationships or we're not in
relationships at all, and whenwe're doing life like that, it
is very attractive to know thatthere is a place we could go.
And this is what I'm working on, and I will have more details.
I'm going to put together ahuge presentation.
I'm working on it.
It's not going to be huge.
(35:30):
It's going to be very simpleand very easy to understand and
very beautiful.
Almost all the details areworked out and I'm going to put
it on my YouTube channel.
I'm going to put it onInstagram.
I'm going to flood the internetthe best I know how with this
presentation long form, shortform, all of it and I'd love to
hear from you.
The other thing is, I'd like toacknowledge that here in the US,
it's almost Thanksgiving and,as you know, our family doesn't
(35:53):
celebrate holidays.
We don't celebrate anythingexcept our son's birthday, and,
honestly, we don't do much ofthat either, because he just
doesn't respond.
Well, I'm sure you canunderstand, but my spouse and I
were talking about it thismorning and we think that it is
important to give gratitudeevery day, every month, not just
during Thanksgiving, but kindof especially during this month
(36:13):
and during the holiday months,because everything looks so much
darker for us, doesn't it?
My spouse actually is stillgrateful for something that
happened when our son was veryyoung, before I was even around.
He was taking Jacob toEasterseals for play therapy and
to just kind of get this allfigured out.
That's where he got diagnosedand they had a program to help
(36:34):
the interaction with family andto help teach dad how to do
things for our son.
So here he is at Eastersealsand every time he left
Easterseals he was so gratefulbecause, although Jacob couldn't
talk, he could walk, he couldtoilet.
There's always someone worse offthan you believe it or not.
No matter what you're goingthrough, you know there's always
(36:55):
someone who's suffering more inone way or another, and I know
that's not a great way to lookat things and it's definitely
not a way to get your yourhappies.
However, it does put thingsinto perspective and that is
something that has stuck with myspouse for all of these years
walking through Easterseals andseeing all the less fortunate
children who were much moredisabled physically than our son
(37:19):
.
Our son is not great mentally,but physically he's doing very
well and my spouse is gratefulfor all of that to this day and
if he ever feels down, he alwaysthinks back to how he felt when
he was leaving Easter Sealsevery time that he went to
therapy with our son.
For me, I am grateful every daythat I've made a huge
difference in this boy's life.
(37:39):
His mother abandoned him.
It was a toxic relationshipanyway between her and my spouse
and it just was not a greatsituation.
All three of her children wereabandoned by her and I was able
to make a difference in the lifeof one.
I'm really, really gratefulthat I made a difference in his
life, and not only his life butmy spouse's life.
(37:59):
You know, things were bleak forme and they were bleak for them
, and then we got together andnow we're bleak together, but
but we love each other.
No, I really I have made a hugedifference in his life, and I
know that I have.
Also, he has taught me a lot.
I'm not a patient person bynature, believe it or not.
I'm a total Gemini.
(38:20):
I'm very, very busy and I'mvery impatient.
Our son taught me patience veryquickly.
I think I learned patience whenI was teaching him what to call
dad and when we were waitingfor daddy to come home and
learning that lesson together.
I started to learn patience andkindness very quickly.
I was always great with kids,but I never wanted any, but I
(38:41):
drew on my background ofcaregiving and babysitting and I
learned patience.
I think that's the biggestthing.
I am much more patient and I'ma much better person than I was
before, and it's all because Ihave to be better for our son.
There are so many bad actors outthere.
There are so many people whoinfluence his life negatively
(39:05):
and impact him in a way that henever should be, and they
disrespect him, and I've alwayshated bullies.
I'm always confronting bullies.
I'm always confronting peopleall my life who pick on people
who they view as being less thanthem, and I don't think that's
fair.
I don't think you should everview people like that, because
you don't know, when I see itbeing done to anyone, it's a
(39:28):
problem.
When I see it being done tosomeone of diminished capacity,
that's a huge, huge problem, andI have been fighting for him
ever since I met him.
So I just think, coming out,you know, through the whole
experience, I've become a betterperson.
I'm very grateful for that.
I'm very grateful for theexperiences that I've had in
order to share them with you.
(39:48):
I'm grateful that I havereceived so many messages that
this is actually helping people.
If nothing else, it can justkind of give you things to look
out for.
Something might happen tomorrowand you can think, oh man, that
one lady talked about this andthat in her episode.
You know, I'm just.
I'm grateful for a lot ofthings and I am constantly
working on making life betterfor us, and I want to include
(40:11):
you.
It's not just a family-focusedthing for me.
I know that I'm not the onlyone suffering.
I'm not the only one who hasgiven up all of my dreams to
help this kid.
I'm not the only one who hasbeen backed into a corner by the
people who are supposed to helphim.
I'm not the only one who'sgoing through this and I'm not
the only one who's going tobenefit from this big project
(40:33):
that I'm working on.
I'm getting closer every day tomaking it a reality, and my
entire focus is helping all ofus, not just the kids and not
just the parents and not justmyself, but all of us.
I really hope to hear from youon.
What are you grateful forthrough your experiences.
Let's give some gratitude.
The holidays are hard on us.
You know all of us.
(40:53):
Again, don't lose your identityand think to yourself what are
you grateful for, whether it'sinside of your family life or
outside of your family life?
What do you thank God for everyday?
And if you don't believe in Godanymore, what are you grateful
for?
You don't have to thank God,but you're probably thankful for
something, and I think it'simportant, at least during these
(41:14):
couple months November,december, january to reflect on
that.
And if you would like to shareit with me, I would love to read
your email.
And again, don't forget, I wantto know your story.
What did you give up?
This is going to be really bigand I can't wait to share it
with you guys.
So get ready for my nextepisode.
It's coming up next Wednesdayand I've got more crazy, crazy
(41:35):
stories.
If you have any questions onanything I talked about today,
of course you can always ask,and I just handed my spouse the
list of questions for theinterview I'm going to do with
him, so we can throw in anotherone or two.
If you did have some and youhaven't gotten your questions in
yet, go ahead and email me nowwith those.
I'm going to probably interviewhim next week and air it the
(41:57):
week after.
Perhaps We'll see how it goes.
I encourage you to stick up foryourselves and your children
during the holidays.
Don't let anyone rain on yourparade, even if it's your own
kid.
Your kid doesn't like theholidays, doesn't like the
decorations, doesn't likesomething.
Make a little something in yourroom.
Have a little private spacewhere you can go and be grateful
on your own and then go backout into the rest of the house
(42:19):
and be immersed in hell, butmake something good for yourself
.
My heart goes out to everyoneduring these times, because
these are some of the mostdepressing times of the year,
and also you're probably goingto have a school break again
soon, and that's always reallygood fun.
Huh, you hang in there.
You're a superhero.
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your Shannon Chamberlin.
I'm so happy that you're herewith me today.
For more information about eachof these episodes, you can head
on over to psabuzzsproutcom,where you'll find the transcript
, show notes, contact, email,social media page, coupon codes
(00:42):
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
(01:05):
specialty foods for their lovedone.
We're just coming off a fullsupermoon.
How did you guys go with that?
Ours was great.
Our son decided to scratch thehell out of his face it's
probably one of the worstscratch-up jobs that he's ever
done to himself followed bybanging his head on his favorite
door jam repeatedly and veryfast.
(01:27):
I can't believe how fast he isat that.
He's like a woodpecker, butwith his head, and he followed
that up with some kind ofmystery bruise.
Probably during the samemeltdown.
He has this huge, huge bruise.
Looks like he got hit with agolf ball on his forearm and he
can't even point out what partof the house did that to him.
He has no idea.
So, yeah, that was great.
(01:47):
And as soon as I mentioned inone of my recent episodes about
how we'll tell him you can'thave pizza if you're not going
to be good, and all that, andhow he would straighten right up
, as soon as I told you guysabout that, he stopped
responding to that, so that nolonger works.
I should never have mentionedit, because it used to work like
(02:08):
a charm.
Now he doesn't care, he'll justdo whatever and expect positive
results no matter what.
So thank God for that supermoonbeing over, and I can tell you
you have 12 months beforethere's another supermoon.
We're always going to have thefull moons, but we'll go without
a supermoon for a full year,and it's been our experience
(02:28):
that the supermoons are evenworse than the regular full
moons.
So I am looking forward to alittle bit more calm over the
next 12 months of lunar cycles.
Anyway, the order of thesestories may be a little erratic.
It's just because there arecertain things that I forget and
then I realize them later and Idon't want to miss them.
(02:48):
So I include them and hopefullywe can all keep up with each
other here.
I wanted to mention I think Imentioned it in one of my other
episodes, but since I wastalking about our fire pit and
us learning about the traumathat our boy went through during
those two months that wethought he was safe with family
while we were readying his roomand the new house and everything
, another thing that happenedduring that time was our son
(03:12):
kept whining about I'm notspecial, I'm not special, and
obviously that prompted us to dosome digging because yeah, he
is special, right, so why is hebothered by that enough to start
crying and repeating it?
He never had a problem with anyof that before.
So we learned through ourinvestigations that during the
(03:33):
two months he was with thegrandparents, when the
grandmother was awake and doingthings with him, what she was
doing was parading him around atchurch, putting him on display
like a zoo animal and tellingeveryone how special he is.
And I think after three to fourdays a week of hearing that for
a couple hours at a time, itprobably really started to wear
(03:56):
on him and it affected himnegatively.
So he no longer likes to bereferred to as special and it
was because of her actions, justher seeking that ego feed from
her peers at church.
She had to show everyone what amess he was and what a saint
she was for even hanging outwith him.
You know what I mean.
And it just wasn't fair to him.
(04:18):
So that was something too, andyou may have picked up by now
that I am aware that there are alot of things in this world
that we cannot avoid, even if wewould like to for our children.
There are just things likethunderstorms.
You know they're going tohappen and he's either going to
freak out about them all thetime or I'm going to try to help
him learn ways to cope withthem, and you might remember
(04:38):
that I did try to help him copewith storms.
He's a lot better at them nowthan he used to be, and I really
believe it's because I try tohelp him cope in the best way
that I can.
And he really likes just likemost of our kids, he really
likes that loud, over the top,overdramatic kind of stuff.
So I always taught him to shakehis fist at the thunder and
(04:59):
lightning and yell if thethunder scared him or the
lightning flashed and then therewas a big crack or boom if it
struck something.
I always taught him to justshake his fist and yell back and
just tried to give him a senseof empowerment through that, and
that's the only thing I reallyfeel that I can do for him with
these things that are constantin life and you can't get away
from them.
So what I taught him aboutpeople parading him around like
(05:23):
an exhibit and talking about howspecial he is, if he didn't
like it, I told him that heshould say he should.
I told him basically that heshould give him stink face and
shake his fist at them and sayI'm not special, you're special
to the best of his ability andhe really likes that.
He loves having permission togo off on somebody.
I mean, don't we all Right?
(05:43):
He loves having permission togo off on somebody.
I mean, don't we all right?
So that was the thing I taughthim about grandmother or anyone
else parading him around andsaying, oh, he sounds special,
look at him.
And what they really mean islook at me, look how great I am
at his expense.
So screw that.
Anything that is done at myson's expense I'm going to teach
him, to teach them a lesson youcan tell it's from me.
(06:06):
It's so funny to hear thethings that come out of his
mouth, even if I'm not trying totrain him or teach him
something, because he has spentso much time with me in his life
that he's basically an echochamber of me and it is just so
funny.
The other day he came into thekitchen for something and it was
completely out of context,which made it even funnier.
But he just came into thekitchen and he said hi or
something, and then he goes wow,okay, that's been one of my
(06:31):
things lately, I don't know.
It's just really funny to me tohear him echoing me and letting
me know what he's picking up onDuring that first year of
school this is where I left offin the last episode is the
influence of that first year ofschool.
So during that first year ofschool, aside from dealing with
(06:51):
the cigarette smoke in his faceand the weirdness of getting off
the bus and collapsing into thegravel, these things happened.
He came home from school oneday and I honestly can't
remember if there was an emailcommunication or telephone
communication in addition to anote sent home, but somehow it
was brought to our attentionthat our son kept sticking his
hands in his pants, as I toldyou, he loves to pinch the bean
(07:13):
right and that's like hissecurity blanket, and he always
wore like jogging pants,something with an elastic
waistband easy on, easy off,easy on the autism, and it was
just his thing.
He likes Velcro shoes,sweatpants, jogging pants, easy
clothes that are not too tight.
You know what I mean.
But apparently it was insulting.
At school the teacher said oh,he keeps sticking his hand in
(07:34):
his pants and I tried to do asocial story with him and I want
you to do social stories withhim.
And instantly, I mean I canprobably see the look on your
face right now, because that'sthe one I had.
Oh, okay, a social story reallyFor this kid.
Okay, sure, yeah, he's reallyconcerned with you.
(07:55):
Know, the social impact ofthings, right, but I had never
thought of it before and Ithought, well, I can't rule it
out.
Maybe they know something thatI don't, maybe I'm being close
minded here, maybe I don'tunderstand this kid as well as I
think I do, because you know,I've mentioned before people
used to ask me how's it goingwith him, how is it okay, how
are you doing being his mom?
(08:16):
And these are people thatwatched him grow up from a baby
and I always said well, I knowthat everyone thinks it's
supposed to be hard, but I mean,really, I feel like he's my
sole child.
You know, we are good, we getalong great.
I came to realize that a lot ofthat had to do with his
involvement in media.
You know, he was always veryentertained and in his own
(08:38):
little world and I did try topull him out of it and interact
with him, obviously teaching himabout you know words and
daddy's gone and daddy's homeand that kind of thing, and
trying to get him to acknowledgethe world around him.
But I also allowed him a lot offreedom to do YouTube and
whatever he wanted to do,because it made him happy.
(09:01):
But I was trying to build abusiness at the same time.
So once I realized that, Ithought, well, maybe I don't
know, maybe it's not as easy,but I was trying to build a
business at the same time.
So once I realized that, Ithought, well, maybe I don't
know, maybe it's not as easy asI think, maybe I'm doing it
wrong and maybe he's spendingtoo much time.
You know, anyway, you canalways second guess yourself.
However, back to the socialstory thing.
I thought, well, I better tryit.
So he came home and I said,okay, well, let's have a snack
(09:24):
and you can come on in here.
And I brought him into theliving room there and sat him on
the couch and I got on the TVand got on YouTube and tried to
find social stories.
It was a huge slap in the facewhen I did this and this was a
pivotal moment in parenting forme, because social stories if
you go and look on YouTube forsocial stories they are very
(09:46):
much little kiddish, right, andour son is very much a little
kid, no matter how big he gets.
So I thought, yeah, okay, thisis probably right up his alley.
I mean, he loves cartoons, heloves Disney, he loves all of
these childish things.
So he was what like 13 at thispoint, right.
And okay, yeah, let's try this.
(10:07):
And you should have seen thelook of insult on this child.
He was so insulted that Ireally think that he was
insulted, that I thought solittle of him.
I guess that I would make himwatch something.
So far beneath him.
I was shocked.
I really didn't expect that.
He threw a fit and he gave mestink face.
(10:30):
You know what I mean.
So I thought, oh shit, thisisn't going right.
So, okay, well, let me try tofind something else.
And I was scrambling, trying tonot acknowledge because I
didn't want it to get worse thisimpending meltdown that I
thought was going to happen.
So I didn't really want toacknowledge it, but I did at
least let him know.
Okay, you don't have to watchthis, give me a minute, bear
(10:51):
with me, I will try to findsomething better.
So I found this kid, and Jacobused to call him a little brown
boy.
That's just the way he does it.
Everything has a color.
So I cannot find him.
I've been looking for days.
This was years ago, so I mean,obviously he's grown now, but he
was adorable and he wore thislittle suit and tie and I think
(11:14):
he stood in front of ablackboard and he made these
cute little videos.
I feel like some of them weresocial stories, but what I was
looking for was a human insteadof a cartoon character, because
I felt like that was whatoffended our son when I tried to
do these social stories withhim.
I think I did try to readsomething to him that they sent
home, but he didn't care andhe's more of a visual YouTube
(11:37):
kid anyway.
So I find this little boy andhe's doing these videos and I
tried to make him watch thoseand he watched it.
But he didn't care, he didn'treceive a message, he didn't
digest any of it, he justappeased me and watched it.
And I think the only reason hedid it was because it was a real
, live, human boy, not a cartoon.
(11:59):
I would try to regularlyincorporate that kid into our
daily television diet.
When he would get home fromschool I would try to find
something relatable and have himwatch it when he got home.
So that didn't work.
My instincts were right Socialstories are bullshit.
They don't work.
Maybe they work for some ofthem, I don't know.
(12:21):
But our kid doesn't care aboutyour social stories.
He doesn't care aboutconforming to what you think is
right.
If he wants to stick his handin his pants to have a security
blanket, then that's what he'sgoing to do.
He doesn't mean to offend you.
Is it his fault you're offendedor is it yours?
Who do you think you'reeducating?
Why do you think that he shouldfit in to the same box as your
(12:44):
neurotypical children thatyou're teaching?
Why do you expect him to behavelike a 13-year-old.
We have done everything that wecan think of to introduce you to
the child that you're dealingwith, speaking to the kids at
school, having meetings with thefaculty before school was even
in session.
I mean, we did everything thatwe could think of.
I sent an entire book about him, you know, and they're wanting
(13:08):
him to behave like a, like agrown person at this point.
And I I was insulted too After,you know, I thought it was just
me, I ran it by his dad.
When his dad got home and hehad the same reaction like, oh
okay, a social story, yeah,great, that'll work.
And we're not trying to have anegative attitude.
It's just that we know our kidand you know, we know he's not
(13:35):
going to fit into that, andthat's another thing that I'm
focusing on in that blueprintthat I told you about.
I'm really excited about that.
I'm going to go into that in alittle bit here.
I think we need to help our kidsdo what they naturally are
inclined to do.
You know Jacob, his spirit,he's raw animal spirit basically
, and while he does need to betamed a little bit, he's
definitely never going to fitinto the mold that everyone has
(13:58):
out there for him.
He is not interested.
So we're trying to deal withthat.
And since he was not respondingto social stories and he was
not responding to verbal cues,and he was just simply not even
responding to directinstructions, to stop doing that
, don't put your hand in yourpants, take your hand out of
your pants, leave your pee, peealone All of that stuff.
(14:19):
He was, you know, just like,hey, I'm going to do what I want
to do.
So our next step was to graduatehim from elastic waistbands to
pants with belts.
So his dad gets one of thoseand I never understood why, but
I let the clothing be betweenthose two, because his dad is a
man.
He was a boy once and I neverwore belts unless they were in
(14:42):
fashion with my Z cabarichis orwhatever.
So I don't have any experiencewith.
What type of underwear arecomfortable for a boy?
What type of belt is best for aboy?
I didn't have any education asfar as dexterity and stuff like
that.
I didn't know how a belt wasgoing to work, but we did know
(15:02):
that a belt was going to beneeded if we were going to move
past this and actually try toget our son some help in school.
So I let his dad handle thatand he got him one of those
little belts with the littlelittle slidey pin.
You know, not not a regularbelt where you can cinch it up
and punch new holes in it andstuff.
It was just it had no holes.
You just pull it tight and thenslide this pin into place and
(15:26):
there you go.
And you know, I can hardlyfigure out how to work those
things and I was reallysurprised for all the years that
he wore this belt, that that'sthe belt.
You know why.
I thought that we would go withmaybe something that was like
almost a macrame and you justput the little thing in there.
You know there's no real holes,you could just put it wherever.
(15:46):
And you know, I thought wewould do something like that,
but we went with the slideybuckle thing and it was the
strangest thing to me, but it'swhat his dad chose and I voiced
my concern and my surprise andwe stuck with it anyway.
So I thought, well, that'sbetween you guys, as long as
this isn't the focal point forthe next four years of school,
then you know, whatever, fine.
(16:06):
So cargo pants and this belt,and that was our answer to
always having to keep him out ofhis own pants during school.
The next thing we had toovercome was, within the same
short amount of time, he got aniPad from the Kiwanis people at
the school previous I think Imentioned that he's like the
only autistic kid there and theywere giving an iPad away to an
(16:28):
autistic kid and it just sohappened that we got it.
So he has this iPad.
I allowed him to use the iPadduring certain down times, which
was pretty much after school.
You know you want to come home,have your snack, watch this kid
on TV for a minute, if I canget him to do it, and then, yeah
, you can play with your iPadwhile I make your dinner.
You know there's not a lot oftime after school to do a lot.
(16:48):
Well, he starts getting intothese terrible sounds and the
iPad didn't have headphones oranything.
So all I heard was thisbreaking glass.
He loves the sound of breakingglass in videos and that's full
blast in the kitchen constantlybecause, as you know, that's
where he hangs out with me whenI'm cooking and he's just
sitting there listening to thisover and over, on full blast and
(17:12):
a half, and it's driving meinsane.
So I get some headphones and Itell him you have to use the
headphones.
And then he's using theheadphones in the same spot in
the kitchen with the same amountof volume and I can still hear.
And I'm like dude, you're goingto blow your ears out, turn it
down.
I mean he just has'm like dude,you're gonna blow your ears out
, turn it down.
I mean he just has noregulation of stuff, you know.
(17:33):
So that was really annoying,but it did work.
I designated an area where hecould sit and use it and I could
supervise him, becausesometimes, depending on what he
was watching, he would get realstupid.
In our townhouse he used to geton my desktop computer and he
found this real asshole guy onYouTube called Alcoholic
Spider-Man.
(17:53):
I think I might have mentionedthat because it was really bad,
terrible, terrible.
I hope that he's banned or shutdown or something.
I did the best I could toreport him, but back then it
wasn't as easy as it is today toreport stuff like that.
So anyway, I put him in a spotwhere I could always see him and
know what was going on and kindof monitor his emotions at that
point depending, and then Imight have to pull him off.
(18:15):
You know, or give him a newactivity is the key term.
So we would always have a newactivity and he relied on that
at school a lot.
That's where I got it from.
School had his whole daywritten out on a whiteboard and
he would go in and they wouldhave him read what they had
written down.
He would read the day, the date, the time, the weather.
He would do a weather reportreal quick and he would go
(18:38):
through and see how his day wasstructured.
Then he knew that, okay, afterthis activity that I really love
, there's going to be a breakand a new activity.
So we took that and use it athome.
I would just say, okay, timefor a new activity.
But it doesn't work unless it'smapped out on a board.
You can't just throw it at himthat it's time for a new
activity and I didn't know that.
(18:59):
So I learned that real quickand I made it on our whiteboard.
I made a little corner of itwith different choices for
activities and then you can do anew activity.
That ended up working prettygood.
But then I noticed that, even ifthe content he was watching
wasn't causing him to havemeltdowns or get weird at all
the length of time that he spentwas causing attitude problems
(19:24):
after he was done.
When would he be done?
Whenever I thought that it wastime to eat.
You know what I mean?
I was just I didn't know whatto do.
So I started having to not onlydesignate an area for him to
use the iPad, but I also had todesignate times for him to use
it.
And at school he got iPad forbreaks for his new activity and
(19:44):
a reward.
When I asked them not to usefood, they started using
technology and they would givehim the iPad as a break.
So I would have to mix it up alittle bit, but I had to give
him breaks on the iPad and onlyallow it, and that caused
attitude problems too.
But they didn't last as long asif I just had to, you know,
pull him off the iPad and puthim at the table to eat or you
(20:06):
know whatever.
So that was a huge learningthing for me, and I was doing it
all by myself because my spousewas out working all the time.
I basically would get up in themorning in the dark and get his
breakfast ready, get him off toschool, have coffee with his
dad, get his dad ready to go andhis dad would either go out in
the afternoon and all the wayinto the late evening to work,
(20:29):
or he would just have anappointment and he would go
somewhere between three and fiveo'clock.
So he was either not home whenour kid got home from school or
he was leaving within an hour ofour kid getting home from
school.
So a lot of the learning andthe adapting and all of this
stuff between me and Jacob wasall just me, all by myself.
I didn't have anyone to sharethe burden with or to share the
(20:52):
information with, and it justbecame, even when my spouse
would get home.
Instead of sharing information,it became just a real like a
bitch fest because things wereso bad and I didn't have anyone
to talk to.
And it was.
I just couldn't believe that hewas such a different kid for
his dad and I didn't think itwas fair that his dad would come
(21:13):
home and the next dayeverything was lovey-dovey
between the two of them and theboy hated me.
He was so mean to me.
So I would share with my spousewhat our son had done, you know
, and I just I had to save itall up.
So the poor guy.
He's out there dealing withpeople for our job and then he
comes home I'm like, hey, howwas your day?
Did you do a good job?
(21:34):
Did you sell?
Okay, now let me unload on you,because your son made my life
hell again.
There was a little funny thingthat happened.
You know I told you that Jacobwas getting into doing his
laundry and stuff with me, right?
So he learned that he hasunderwear and socks and shirts
and pants.
He has number one shirts andnumber two shirts.
Number one shirts are longsleeve turtlenecks and stuff
(21:54):
like that underneath, and thenthe number two shirt is the
second layer and because it wasso cold up there, we had to
establish that.
So he learned that he has socksand he came into my room one
time during that first year andhe was very unstable emotionally
(22:14):
at that time.
He went from being our happyboy all the time to just you
never know.
You never know.
He's either going to be happyor he's going to be just pissed
off.
He had to get up so early and Ididn't like waking him up and we
just wanted him to do things onhis own.
So his alarm clock goes off andhe's in there supposed to be
getting dressed and I was stillin my bed and he storms into our
(22:36):
room, has this real angry lookon his face and he says I need
sock.
And as an adult I thought thatwas hilarious.
I'm like you need what, what?
And he kept saying it and thenI think it was his dad figured
out he needs a sock or socks.
He didn't have any socks in hiscloset.
But he, I thought, where areyou learning this?
(23:02):
What are you talking about?
And for some reason that littlegiggle reminded me of something
else.
He had been learning money atschool.
At the previous house, the onewhere we were still in boxes.
They were teaching him moneyand they would pretend to do
like a store and they wouldactually take trips to a store,
to the local Walmart, and go andgive money to the cashiers and
(23:26):
expect money back, and they wereexpected to do this.
So he had this little classthat he would go and they were
all special in the class, butthey weren't like him.
And so we thought, well, that'sreally cute, let's do that with
him on our time too.
And we had this little cornergas station and they knew us.
The cashier knew my spouse.
She flirted with him all thetime and she ended up knowing
(23:47):
Jacob.
And so we're out in the parkinglot and his dad gives Jacob a $5
bill this was before we wentgluten and sugar free and he
says, okay, go in there and getyour candy and then give this to
the lady, wait for your changeand then come out.
And he okay.
So he runs into the gas stationwith the $5 bill and within 10
(24:07):
seconds he's coming back out andhe's got the $5 bill and the
Kit Kat Gangster the lady,didn't even come out.
You know we had to go back in,but she wasn't worried about it.
But that was the first and lasttime that we tried to have him
do what the school says he's sogood at.
I mean he really, you know hesure does perform for them, but
(24:27):
when we try to do it it's likehe's never done it before.
And then you start to wonder isthe school being honest with me
?
Are they telling me the truth,or are they just trying to make
themselves look good?
Because I cannot tell that he'slearned anything.
This doesn't even seem likehe's ever done it before.
What is this?
Is this a different child?
Is he a different person outthere.
(24:47):
You know, you kind of want tospy on him and stuff, and that
actually was the school where Iwas trying to.
But as bad as everything got, henever got karma.
You know, I've always been justabsolutely shocked and
(25:11):
surprised that nothing has everturned around and bitten him in
the ass the way that it wouldfor a normal person.
And what do I mean?
Well, there were times when Imean, we had a full flight of
stairs in there and it wascarpeted.
You know how dangerous carpetedstairs can be, stairs anyway,
right.
But the way that he acts onstairs and on things where any
(25:32):
regular person is going to losetheir balance, anyone who's
paying attention is going tolose their balance and fall and
get hurt.
He is not paying attention andhe's completely freaking out,
flapping his head, spinningaround, I mean just exorcist
stuff.
And he never, ever fellBalancing on the most dangerous
stuff in my opinion, going upand down the stairs and the
(25:53):
whole time just in full meltdown.
You know, and we I was alwaysnot we, me I was always there
and I was always like slow down,please slow down, don't do that
on the stairs, please get offthe stairs, please get away from
the edge.
Please get away from this.
Please get away from that.
You're allowed to have yourmeltdown, but please don't do it
.
Right there, I just was soterrified that, you know,
(26:13):
something was going to happenand it was just going to get so
much worse because it was verydangerous what he was doing.
But nothing ever happened.
And I started to think, man,would it teach him a lesson if
something happened?
I mean, does he need to fall?
Does he need something to scarehim into listening and
understanding?
Because, as you know, he's noteven afraid of cars.
But I never wanted that, youknow.
(26:33):
I just sometimes would wonderhow am I going to get through to
him that this is not safe foranybody?
Well, the other day he was toldto slow down because it was
raining and they have a woodendeck on the front and back of
the house and he has no regardfor that at all.
He's never fallen on the ice,he's never fallen off the stairs
, he's never gotten what wascoming to him.
(26:56):
If you're anyone else and youdo this nonsense that he does in
the nonsense places that hedoes it, you're going to get
hurt.
He never got hurt.
He never had what was coming tohim.
Well, just the other day thathe does it, you're going to get
hurt.
He never got hurt.
He never had what was coming tohim.
Well, just the other day he wastold please slow down, be very
careful.
Here's why it was illustratedto him and he went out there and
he busted his ass and hefinally learned.
(27:16):
I think that this is serious.
We're not joking.
It's not something we're justtalking to hear ourselves talk.
We actually care about yoursafety and we're telling you how
to navigate this and you needto listen.
So now he has a memorableexperience to reflect on.
When he starts acting like anasshole in a dangerous place
(27:37):
where we have warned him not to,it finally happened.
I thought, oh, his anointinghas run out.
He had that anointing on him,but not anymore.
I have a couple things for youguys.
I'd really like to hear fromyou if you have anything that
you would like to share on acouple different points.
First, I'm working on somethingreally big here behind the
(27:58):
scenes.
It's not just working on thefamily and doing a podcast.
I know that in one of myepisodes, or several of them, I
have mentioned something that Icalled the blueprint, and ever
since I mentioned that that waslike two years ago, maybe.
I see it everywhere.
Every company out there hasdeveloped something and they all
call it a blueprint and I'm alittle bit pissed off about that
(28:19):
, but that's okay because mineis not reliant on the name.
However, you know as hard as itis in this life.
My spouse and I we kind ofalready have the dream as far as
a complete family unit.
Many of you out there aresingle parents or you're
splitting custody or somethinglike that, and if you are living
in a family unit situation,you're actually not functioning
(28:42):
as two spouses with children.
You're just strangers.
And you know my spouse and Iare very, very lucky, but it's
still hard.
So, as hard as it is for us, Iknow it's even harder for you.
And if you heard my episodementioning the blueprint, this
is the thing I'm working on.
This is huge.
I am so close to marketing thisand I'm also very close to
(29:03):
finding places to create thissafe haven.
This is huge.
I want to ask you to contributeyour stories.
I don't have to share your name, I don't have to share anything
.
I'm getting together a few bitsof information, such as some
statistical facts about familieslike ours and kids like ours
and parents who deal with thesesituations.
(29:25):
But I'm also collecting stories.
Of course, I've got my ownhorror stories and I've got some
from other parents already, butI'd like to have some more.
Right now, what I am interestedin is you as the parent or the
caregiver.
I want to know how severe autismhas affected your plans for
your American dream or yourwhatever dream it is.
(29:48):
If it's not an American dream,whatever it is.
You know we are conditionedfrom the time we are young.
What do you want to be when yougrow up?
And if we're lucky, we havepeople putting us on the right
path and we are able to follow apath of education and
experience to get us to where weenvision ourselves when we grow
(30:09):
up.
If you're not lucky, thenyou're just out there flapping
in the wind and you have thesebig dreams and you're doing
everything you can to figure itout.
Either way, you're working yourass off towards a goal to better
your life, to provide for thefamily that you plan to have, or
to provide for yourself, if youdon't want a family, and you
are trying to achieve this bigdream and make it a reality.
(30:31):
So you have done the schooling,you've done the apprenticeships
, you've done the low totem polework, you've worked your way up
, you've gone to all theseminars, you've done all of the
projects and all of the reportsand all of the things.
You've gotten all of theaccolades.
You've graduated from all ofthe classes and all of the
colleges and you're continuingyour education and you're
(30:53):
working and striving towardsthis thing and you are an expert
in your field and you are man.
You are just on it.
You are ready to take on theworld.
You're going to have some kidsand provide a life for them, and
your spouse is going to be justso happy with you and
everything's going to bebeautiful.
What is it for you?
I would love to know.
It's very important to theproject that I am working on,
(31:15):
and this project is to provide acommunity for the community
that I'm speaking to right now.
We are so far apart, we are soalone, we are so unsupported, we
are so misunderstood and we areso at our wits end.
We're at war with the schools.
We're at war with thetherapists.
We're at war with the doctors.
(31:36):
We're at war with our neighbors.
We're at war with everyone whodoesn't care to try to
understand how our lives have towork.
I am working on something thatis going to provide respite for
people like us, safe havens forour children and us, healthy
havens for our children and forus, and they're going to be
(31:57):
exclusively for us.
So I need your stories, I needto know what you gave up.
I need to know how it hasaffected you.
What was your life like beforeyou had to make the decision to
stay with your child instead ofgoing to work?
You either are going to give itup and stay home and take care
of your kid because no one elsewants to deal with them, or
(32:18):
you're going to keep chasingyour dream and, in some capacity
, surrender your child to thestate when you made the decision
to stick with it and fight foryour kid and give up everything
you ever worked for andeverything you ever dreamed of.
What were you working for?
What was your dream?
Would you please tell me?
I would love to include it inmy presentations.
I'm creating something of a TEDTalk, even though I'm not going
(32:42):
on a TED Talk not yet anywaybut this is going to be huge and
it's going to be for us and I'mforming all the right things.
I'm doing all the right thingson the business end of it.
This is huge and it's important.
We need it.
You don't have to believe in it.
You don't have to want it.
Some of us do and some of usdon't.
And the ones who do, I'm goingto be so grateful when I'm able
(33:04):
to present you with this bigbreak for you and this community
.
It's awesome and I just I wantyour stories, so please email me
at contactparentingsevereautismat gmailcom.
Tell me what you wanted to bewhen you grew up, or tell me
what it was.
What were you doing?
Were you almost there?
Were you living the life?
(33:24):
Were you achieving your dreams?
Were you doing all of thethings that you had set out to
do?
Were you just right, on theright track?
Were you running a business?
Were you working with peopleand helping them?
Were you doing something andgiving to your community and
doing things that fed your soul?
What did you have to give up inorder to live the lifestyle
(33:45):
that you are currently livingfor?
Severe autism.
What are you good at?
What is your passion?
What are your talents?
Sometimes it's a good thing toreflect on that.
Anyway, being a caregiver forany kind of person starts to
become your identity if you'renot careful and I know that from
personal experience I almostforgot about everything that I
dreamt of.
So don't let it become.
(34:06):
I think I might need sometherapy on that.
I'm still in tears here.
Don't let it become youridentity.
Let's reflect on you.
What are you good at?
What is your passion?
What are your talents?
If you were in a communitywhere everyone was in the same
boat and was supportive of oneanother and understanding of
(34:26):
each other's needs for space andsensory deprivation and deep
breathing and all of the thingsthat we don't get If you were in
a community like that, whatwould it do for you?
This is huge what I'm working on, and it's not going to be for
everybody, because some peopleare already set in their ways
and they already have a greatplace and they already have
(34:46):
residency in a state where theirkid's about to be taken care of
and stuff.
But some of us are absolutelynot being helped and we are
consumed by this lifestyle andwe see no light at the end of
the tunnel, don't get tointeract with other people in
the regular world and we don'tfeel that we have any chance to
contribute or feel that we'reworth anything more than being a
(35:09):
slave to our children.
A lot of us are not in healthyrelationships or we're not in
relationships at all, and whenwe're doing life like that, it
is very attractive to know thatthere is a place we could go.
And this is what I'm working on, and I will have more details.
I'm going to put together ahuge presentation.
I'm working on it.
It's not going to be huge.
(35:30):
It's going to be very simpleand very easy to understand and
very beautiful.
Almost all the details areworked out and I'm going to put
it on my YouTube channel.
I'm going to put it onInstagram.
I'm going to flood the internetthe best I know how with this
presentation long form, shortform, all of it and I'd love to
hear from you.
The other thing is, I'd like toacknowledge that here in the US,
it's almost Thanksgiving and,as you know, our family doesn't
(35:53):
celebrate holidays.
We don't celebrate anythingexcept our son's birthday, and,
honestly, we don't do much ofthat either, because he just
doesn't respond.
Well, I'm sure you canunderstand, but my spouse and I
were talking about it thismorning and we think that it is
important to give gratitudeevery day, every month, not just
during Thanksgiving, but kindof especially during this month
(36:13):
and during the holiday months,because everything looks so much
darker for us, doesn't it?
My spouse actually is stillgrateful for something that
happened when our son was veryyoung, before I was even around.
He was taking Jacob toEasterseals for play therapy and
to just kind of get this allfigured out.
That's where he got diagnosedand they had a program to help
(36:34):
the interaction with family andto help teach dad how to do
things for our son.
So here he is at Eastersealsand every time he left
Easterseals he was so gratefulbecause, although Jacob couldn't
talk, he could walk, he couldtoilet.
There's always someone worse offthan you believe it or not.
No matter what you're goingthrough, you know there's always
(36:55):
someone who's suffering more inone way or another, and I know
that's not a great way to lookat things and it's definitely
not a way to get your yourhappies.
However, it does put thingsinto perspective and that is
something that has stuck with myspouse for all of these years
walking through Easterseals andseeing all the less fortunate
children who were much moredisabled physically than our son
(37:19):
.
Our son is not great mentally,but physically he's doing very
well and my spouse is gratefulfor all of that to this day and
if he ever feels down, he alwaysthinks back to how he felt when
he was leaving Easter Sealsevery time that he went to
therapy with our son.
For me, I am grateful every daythat I've made a huge
difference in this boy's life.
(37:39):
His mother abandoned him.
It was a toxic relationshipanyway between her and my spouse
and it just was not a greatsituation.
All three of her children wereabandoned by her and I was able
to make a difference in the lifeof one.
I'm really, really gratefulthat I made a difference in his
life, and not only his life butmy spouse's life.
(37:59):
You know, things were bleak forme and they were bleak for them
, and then we got together andnow we're bleak together, but
but we love each other.
No, I really I have made a hugedifference in his life, and I
know that I have.
Also, he has taught me a lot.
I'm not a patient person bynature, believe it or not.
I'm a total Gemini.
(38:20):
I'm very, very busy and I'mvery impatient.
Our son taught me patience veryquickly.
I think I learned patience whenI was teaching him what to call
dad and when we were waitingfor daddy to come home and
learning that lesson together.
I started to learn patience andkindness very quickly.
I was always great with kids,but I never wanted any, but I
(38:41):
drew on my background ofcaregiving and babysitting and I
learned patience.
I think that's the biggestthing.
I am much more patient and I'ma much better person than I was
before, and it's all because Ihave to be better for our son.
There are so many bad actors outthere.
There are so many people whoinfluence his life negatively
(39:05):
and impact him in a way that henever should be, and they
disrespect him, and I've alwayshated bullies.
I'm always confronting bullies.
I'm always confronting peopleall my life who pick on people
who they view as being less thanthem, and I don't think that's
fair.
I don't think you should everview people like that, because
you don't know, when I see itbeing done to anyone, it's a
(39:28):
problem.
When I see it being done tosomeone of diminished capacity,
that's a huge, huge problem, andI have been fighting for him
ever since I met him.
So I just think, coming out,you know, through the whole
experience, I've become a betterperson.
I'm very grateful for that.
I'm very grateful for theexperiences that I've had in
order to share them with you.
(39:48):
I'm grateful that I havereceived so many messages that
this is actually helping people.
If nothing else, it can justkind of give you things to look
out for.
Something might happen tomorrowand you can think, oh man, that
one lady talked about this andthat in her episode.
You know, I'm just.
I'm grateful for a lot ofthings and I am constantly
working on making life betterfor us, and I want to include
(40:11):
you.
It's not just a family-focusedthing for me.
I know that I'm not the onlyone suffering.
I'm not the only one who hasgiven up all of my dreams to
help this kid.
I'm not the only one who hasbeen backed into a corner by the
people who are supposed to helphim.
I'm not the only one who'sgoing through this and I'm not
the only one who's going tobenefit from this big project
(40:33):
that I'm working on.
I'm getting closer every day tomaking it a reality, and my
entire focus is helping all ofus, not just the kids and not
just the parents and not justmyself, but all of us.
I really hope to hear from youon.
What are you grateful forthrough your experiences.
Let's give some gratitude.
The holidays are hard on us.
You know all of us.
(40:53):
Again, don't lose your identityand think to yourself what are
you grateful for, whether it'sinside of your family life or
outside of your family life?
What do you thank God for everyday?
And if you don't believe in Godanymore, what are you grateful
for?
You don't have to thank God,but you're probably thankful for
something, and I think it'simportant, at least during these
(41:14):
couple months November,december, january to reflect on
that.
And if you would like to shareit with me, I would love to read
your email.
And again, don't forget, I wantto know your story.
What did you give up?
This is going to be really bigand I can't wait to share it
with you guys.
So get ready for my nextepisode.
It's coming up next Wednesdayand I've got more crazy, crazy
(41:35):
stories.
If you have any questions onanything I talked about today,
of course you can always ask,and I just handed my spouse the
list of questions for theinterview I'm going to do with
him, so we can throw in anotherone or two.
If you did have some and youhaven't gotten your questions in
yet, go ahead and email me nowwith those.
I'm going to probably interviewhim next week and air it the
(41:57):
week after.
Perhaps We'll see how it goes.
I encourage you to stick up foryourselves and your children
during the holidays.
Don't let anyone rain on yourparade, even if it's your own
kid.
Your kid doesn't like theholidays, doesn't like the
decorations, doesn't likesomething.
Make a little something in yourroom.
Have a little private spacewhere you can go and be grateful
on your own and then go backout into the rest of the house
(42:19):
and be immersed in hell, butmake something good for yourself
.
My heart goes out to everyoneduring these times, because
these are some of the mostdepressing times of the year,
and also you're probably goingto have a school break again
soon, and that's always reallygood fun.
Huh, you hang in there.
You're a superhero.
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