January 8, 2025 • 47 mins
Our latest episode explores the transformative journey of non-schooling for kids with severe autism, emphasizing the value of nature, creativity, and family engagement in a child's learning experience. We reflect on the challenges posed by traditional education methods and share insights on how we've adapted our parenting approach to better support Jacob's unique needs and interests.
• Exploring the concept of non-schooling as an alternative education path
• Emphasizing the importance of outdoor experiences and nature in learning
• Reflecting on Jacob's interests in movies and theater as educational opportunities
• Establishing structured family time and navigating Jacob's resistance
• Communicating effectively with Jacob about his feelings and behaviors
• Acknowledging resilient moments of growth and understanding in communication skills
• Identifying external stressors affecting Jacob's emotional well-being
• Planning future episodes focused on experiential learning and caregiver relationships.
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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.
If you have comments orquestions, you have two ways you
can reach me.
If you go to my PSA - short forParenting Severe Autism - psa.
buzzsprout.
comThat's the hosting site for my
actual podcast before it getssent out to all the other
(00:40):
platforms.
So from that site you can clickon fan mail and I don't believe
there is a charge to send meany messages, so you could do it
that way.
You'll also find multiple waysto support the podcast.
If you're interested in that,you could find little donation
icons on your podcast player onyour device, or you can check
out the links once you are on myBuzzsprout site.
(01:04):
Additionally, you can contactme via email at contact.
parentingsevereautism@ gmail.
com.
The most important thing isthat you are here listening to
these episodes and sharing them,hopefully, especially if one
resonates with you, and that'sthe best thing we can do for
ourselves in our exclusive,marginalized little community
here.
(01:24):
So thank you so much forlistening and sharing my podcast
with others.
So, picking up where we left off, we are in the middle of
attempting non-schooling Torefresh your memory.
Non-schooling, as I understoodit was a way to basically detox
the child from the traditionalmethods of schooling in public
and private education systems.
(01:45):
So since our son appeared sodamaged from his experience at
his most recent school and wehad to pull him out of school,
we signed homeschoolingpaperwork but decided to pursue
the non-schooling for the firstsix months to a year, just to
give him a chance.
I mean, I didn't feel rightjust pulling him out from one
institution and putting him intoanother, so to speak, by making
(02:07):
him sit at the kitchen tablefor how many hours a day doing
the same things that he did atschool.
He just really seemed like heneeded a restructuring in his
life and we just wanted him tobe his happy, bubbly self again.
So this was the route that wechose.
So with non-schooling, you'rebasically allowing the child to
experience life as it comes atthem.
(02:28):
And you know, with his autism,if he is allowed to do what he
wants, he'll just stand in onespot in his bedroom all day and
shuffle his feet and hum.
So life would not come at himand he would experience nothing.
So I kept trying to get him outin the world, out on the
property we had, all thisproperty.
We would take him for hikes andhis dad would take him for
four-wheeler rides.
(02:49):
We would take him stalkingwildlife to pretend that he was
hunting.
This is where he learnedhunting voices from dad
accustomed to the previoustenants not going outside ever,
so they had no idea, basically,what humans were on our property
.
It was really easy to sneak upon the deer.
(03:13):
We had porcupines and some ofour family was able to see
bobcats.
We had bears.
There was a wolf track foundseveral years in a row Not a lot
of them.
We had foxes, a ton of differentwild birds.
We had wild turkey and grouseand goose and just all kinds of
fun stuff, and I think we hadotters.
(03:33):
We had a beaver, it was just.
It was really cool, you know.
So we thought, well, we'll justtake him out and introduce him
to nature, and we had a couplelittle spots in the woods where
we set it up for picnics andstuff.
We found some really beautifulspots and we thought we would
just try to let him absorbnature, because that's what all
of us are missing.
You should try it too.
Take your shoes off and gostand on Mother Earth.
(03:55):
It's really been helping us andit seems to calm him down.
I don't know if I mentionedthat before, but it wasn't a
part of our lives at thisnon-schooling point.
But it is a part of our livesnow because we don't get enough
nature anymore.
So maybe give that a shot.
So what you know, what are yousupposed to do with this kid if
you don't educate himtraditionally?
And he doesn't?
(04:16):
You know, he just he's nothappy.
So I started thinking back onhis interests, because he's not
that different from any of us.
If we're not doing somethingthat we enjoy, we're not as
happy as we could be.
Well, he's just a little moreextreme to where he's just not
happy if he's not doingsomething he enjoys.
So far we know that he enjoysvideo games, watching movies on
(04:41):
repeat in specific spots,shuffling his feet in his room
and that's about it, and thenthrowing little pissy fits all
the time, no matter what if wetried to get him to do something
that was outside of the realmthat he is accustomed to that I
just named.
So it was a little bit of achallenge.
But I started thinking aboutsome stuff and, as I've
mentioned before, jacob isreally great at sound effects
(05:04):
and he loves acting out scenes.
I remember back when he wasprobably seven years old've Got
a Friend in Me and we were alljust sitting there as a family
(05:27):
unit watching this movie.
For the umpteenth time Out ofthe blue, jacob jumps up from
his seat with his dad on thecouch.
He's laying around in hisunderwear.
So he jumps up off the couchand grabs this tiny little
orange microphone that I'venever seen him play with before.
His toys were everywhere, but Inever really saw him play with
any toys.
(05:47):
So he jumps up and he grabsthis little microphone at the
perfect time and starts loungesinging kind of and basically
imitating the penguin.
The moves were perfect.
It was at the exact right timing, from the time he flew off the
couch, picked up the thing andwent into character and he sang
the best that timing, from thetime he flew off the couch,
picked up the thing and wentinto character and he sang the
best that he could, the wholesong You've Got a Friend in Me.
(06:10):
He couldn't pronounce the words, of course, but he likes to
make a noise.
It's kind of like humming, butwe knew what he was doing and
mostly it was expressive, verymuch in the face and acting out
in the body, and it was lovely.
It was so entertaining andshocking that he did that.
I mean, we've never seen him dothat before.
So that is something that was atthe forefront of my mind when I
(06:34):
was trying to think of whatdoes this kid even like that I
could substitute in place of anactual school education?
So I thought well, he lovesacting and he loves doing voices
, so he loves acting out scenesfrom movies with his dad as well
.
I mean, he's got quite a range,you know, of course.
He's got Full Metal Jacket andToy Story, he's got the Lion
(06:55):
King, emperor's New Groove Cars,scarface, scooby-doo just every
movie that they've ever seen.
I mean just every movie thatthey've ever seen.
I mean he just watches them allon repeat and he and his dad
have a routine with each andevery movie that they watch
together.
They can recite back and forthwhole parts of the movie
Hunchback of Notre Dame,everything that he has ever seen
(07:18):
, if his dad has seen it withthem.
They have a little routine andit's adorable.
So I thought you know what?
Why don't I try to find like aspecial needs theater group or
something?
And suddenly I am excited.
I'm like, yes, this is gonna beit.
So my search started for sometype of entertainment group like
(07:38):
that that accepts special needskids and allows them to express
themselves through acting andsong, even if they suck at it.
That's why I needed it to befor special needs kids and
allows them to expressthemselves through acting and
song, even if they suck at it.
That's why I needed it to befor special needs.
You know, you can't expectevery kid to be a performer, but
every kid deserves to have anoutlet.
Every kid deserves to have alittle bit of fun and do the
things that they enjoy doing,especially our kids.
(08:01):
So I just thought that wasgreat and the hunt was on for
that.
It took a really long time forme to come up with anything.
As a matter of fact, I wasreally discouraged after about
the first six months ofsearching, but that was one of
my ideas for his newnon-schooling lifestyle.
So in the meantime he was justbecoming more and more of a
(08:21):
nightmare for us and I didn'tknow what to do.
He was getting so bad.
We decided to make sure we weretaken two days off a week.
We never really did, because Iworked and kept him with me in
the office all the time and theoffice was like a second home
for us.
He had his own room with a bedand everything, a TV game system
(08:42):
.
We had a kitchen.
I mean it was perfect.
It was almost like I wasn'tworking working, except that I
needed to have my quiet time towork and I gave him that same
quiet time to play and do whathe wanted to do.
So it was a really good setup.
We took holidays off that werekind of forced holidays, but we
worked every chance we gotbecause we were trying to get
ahead and we were trying tobuild a business from the ground
(09:03):
up.
Anyhow, when we pulled him outof school we realized that you
know what?
We need to be more deliberateabout everything now, because
he's not going to be in school.
He's going to notice if we'reworking all the time.
So life is different and weneed to make some changes.
So we decided to take two daysoff a week and in the business
(09:24):
of sales, taking two days off ina row is not the greatest idea.
So we took our slowest days.
We researched all of ourcalendars and came up with well,
wednesday and Sunday are thebest days for us to take off.
Wednesdays and Sundays were forfamily time.
We would demand to have a fewhours in the morning just to
(09:45):
ourselves to actually getcomfortable and shake off any
feeling of needing to work.
You know, just have your coffee, relax, get into a different
mindset, get some stuff done.
You know, just regular people,day off type stuff, right.
So Wednesdays and Sundays.
Now, as soon as we made thatdecision, we also realized that,
(10:05):
you know, he doesn't reallyhave much of an interest in
having us designate two days ina row to family time either.
He is really not a fan of us atthis time.
So we thought, well, it'sprobably going to work out
perfectly for everyone becauseit'll give him a break and then
a few days later he gets to hangout with us again and then he
(10:26):
can do his own thing.
And so it just seemed like itwas going to work out.
As soon as we implemented thisnew plan, we didn't even
actually tell him and maybe thatwas where we went wrong is we
didn't tell him our actual planand he just started realizing
that on these two days of theweek we were in his face more
than usual, and maybe that'sbullshit to him.
(10:46):
He was just pissed.
So every single Wednesday andSunday morning we would go
outside and have our coffee andenjoy the wildlife and
everything, and he would get up.
As soon as he knew that we wereenjoying ourselves, knew that we
were enjoying ourselves, hewould run outside and just
(11:07):
commence to screaming at us andwhining and, using no words that
he had in his vocabulary, he'llbare his teeth and make this
real whiny, pouty face and thenopen his mouth really big like a
scream mask and then just makethis awful high-pitched, you
know, and he would do this forhours.
No matter how we addressed it,he would not stop.
(11:29):
He just refused to allow us tohave our Wednesday and Sunday.
We never once, in four years ofhaving Wednesdays and Sundays
off, got to enjoy one of thosedays Never once.
He would not allow it and hehad it timed perfectly.
We didn't even tell him whatday it was, he would just do it
(11:50):
Every single light clockworkWednesday and Sunday.
It was freaking terrible and itgot so bad so quickly that I
started to research online, youknow, because I hadn't met
anyone else who could help us.
Now I'm on YouTube looking forideas and reasons and solutions
and everything you know.
(12:10):
Well, everything was justreally superficial information,
really dumb, just people talkingheads saying stuff without
saying stuff and making aYouTube channel with it, and it
was just garbage information.
None of it, none of it wasuseful, not one piece.
(12:32):
Finally, I ran across a ladyand I have told you about her
before and I don't know her name.
I never found any of her othervideos.
I got the answer I needed, theanswer that I was looking for.
It just resonated with me wasthat, hey, when your kid, with
autism basically, is being ajerk anytime, that they're
actually acting inappropriatelyand it's affecting you
negatively, you need to tellthem what is going on.
(12:56):
She said the best thing to dois to calmly address them like a
regular person, because that'show you want them to understand
their own place in the world.
I view you as a regular person.
You are not a special needsperson to me at this time.
You are the child, I am theadult, but you are a regular
(13:16):
person.
So it's that kind of mindsetand she just said you have to
tell them how it makes you feel.
You have to sit them down, gettheir attention the best that
you can and tell them when youmake this noise, that gives me a
headache, it makes my head hurtand that makes me sad or that
(13:38):
makes me feel very angry,because sometimes you're going
to have them do something andyou're just going to snap out,
and I snapped out yesterday.
It's going to happen.
So not everything that they dois going to make you feel
exactly the same way, and that'sthe reason that we need to
communicate it to them and havethem understand that what you do
(13:59):
creates a ripple effect in thisworld.
I am part of your world.
I get that first ripple andthis is how it makes me feel.
I don't like it.
So I adopted that very quicklyand every single time he would
do something to irritate me, Iwould say, jacob, when you blank
(14:19):
, blank, blank, it makes me feelblank, blank, blank.
And I would say for the firsthandful of times he looked
shocked or dumbfounded that Iwas actually speaking to him
like a regular person and that Iwas sharing with him how I felt
and what it was that he wasdoing that was making me feel
(14:41):
that way and why I was going toreact the way that I was.
So I thought, yeah, this isgreat.
He just had this dumbfoundedlook.
I don't know that he understoodeverything that I was saying,
but he, at least, was trying toabsorb and adjust to hey, she's
not like scolding me, she'sactually she's.
Why is she talking to me likethis, you know, and almost as if
(15:04):
he couldn't believe that I wasrevealing my feelings to him,
and it actually.
He is a little bit compassionatesometimes and I think it
actually affected him.
After about five or ten timesof it, though, I would say,
jacob, when you and he wouldinsulate and just start whining
and basically whining over myvoice and screaming and doing
(15:28):
all the noises that he couldpossibly do, and then it started
to become physical as well, andeventually he would counter my
attempt with a fucking fullmeltdown.
So it didn't work.
After a while, and this becamehis MO, I would learn something
and start to use it to counterwhat he was doing that was
(15:50):
hurting me or hurting the familyor causing strife in one area
of life or the other, and hewould adapt and overcome.
Whether it was talking over meor yelling over me or having a
full meltdown or just wising upto whatever the change is that
we made, he would adapt andovercome and get back to doing
exactly what it is that we weretrying to stop.
(16:13):
This became the constant andI'm racking my brain for weeks
now trying to remember morespecifics, but they were.
I call them the nickel and dimeshit, because in between all the
big shit was this nickel anddime bullshit that just eats
away at whatever you have leftin between all the big things
(16:33):
that you have to deal with withhim.
I'm having a lot of troublecurrently remembering the nickel
and dime crap, but I will throwit in there anytime I can.
But the main point is thatanytime he would do something
and we would come up with a wayto prevent him from doing it, he
would come up with a way aroundit to get back to doing it.
And it was maddening.
(16:54):
It was every, every singlething in life, all of it.
This applies, it is I can't.
I mean it just sucks.
So anyway, it was a great ideaand I still do it to him and he
actually hates it.
He does not give one flyingfuck how I feel about what he's
doing until he's ready to care.
(17:16):
Then he'll be like oh, are youokay?
Then he'll say I feel bad.
I'm sorry, but the biggestthing that works right now is
just to stop talking to him andstop responding, and he actually
really hates that, but he hatesit differently and he tries
really hard to get in my goodgraces again, even though he
knows when I'm done talking tohim, I'm done for the day.
(17:39):
It's over and I'll try againtomorrow.
That's I have to remove myself,but he tries like hell the
whole rest of the day to get meto talk to him.
So that's my new psychologicalwarfare that's going on for the
past few years.
So after he started resistingthat, I thought, well, here's
something we can do.
Maybe I can look on this iPadand see what other apps are
(18:02):
available for homeschooling, youknow.
So I started looking intospeech therapy and I found a
conversation app.
I found a couple different ones.
I downloaded them and startedtrying to make that part of his
daily educational diet, becauseyou can't let up on that, even
though you're non-schooling.
That's different.
Learning math and whether it'ssunny or cloudy outside, and how
(18:24):
to sit still in your seat andhow to ask to go to the bathroom
that's school, but speech wedon't want to lose that.
He had 150 words and I wantedto at least keep it that way
until I could find something tohelp him.
So I get this conversation appand he hated it.
He hated every single one ofthem.
He would not, freaking, do it.
(18:45):
They were cool, they would havemultiple choice.
They would give you a situation.
So now it's listening to thestory and comprehending the
question, the story and thequestion and then choosing the
right action.
And he was just guessing hisway through it.
Just tap the screen and get onwith it.
You know, if you get it wrongyou get another try.
It's not that hard.
So he worked his way aroundthat and never did learn
(19:07):
anything.
And he always, to this day,will start complaining if we're
trying to get him off of hisautism rotation of echolalia.
He'll go oh, conversation,conversation and he'll start
yelling at me about conversation.
So that did not make a greatimpression on him.
But I stuck to my guns and Imade him do it as often as
(19:29):
possible and I didn't care if hefought me on it because you
know, damn it, man, I am tryingto help you.
I can't just let you waste awayand I can't put you in that
school and I don't know what todo.
So I'm doing the best I canright now.
I just want you to heal.
You know he was emotionallydamaged.
He has trusted everyone in hiswhole life and it seems like in
(19:51):
one 12 month period, everyone heever trusted let him down and I
felt terrible for him.
So I try to look at it frompossibly his perspective.
You know, I think we let himdown when we left him with his
grandma and grandpa for so long,even though we thought
everything was going to be fineand even though his dad would
give him the option all the timeon the phone do you want to
(20:13):
come home or do you want to staywith Mamaw and Peppa?
And he would say, I want tostay?
And we would say okay.
But I think that obviously theylet him down because he was so
unhappy and collapsing on mewhen we finally got him in the
parking lot that day.
So I think that he felt that welet him down.
His grandparents let him down.
I think he felt that his sisterand his mom let him down
(20:34):
because he never should havebeen with them in the first
place.
And the only thing that everleaves him is hurt in his heart
because that woman doesn't evergive him closure.
She just pops into his life andthen pops right out without
even saying bye.
Give him closure.
She just pops into his life andthen pops right out without
even saying bye.
So all of that happened in atwo-month frame of time.
And then we send him into schooland he's always trusted all the
(20:56):
people at school, even thoughit's a new school.
He trusts you.
He never, ever mistrustedanyone.
You know, he just loveseveryone and he goes there and
we trust the educators with ourchild.
He also trusts them withhimself, and here they are
forcing him into situations thathurt his sensory processing and
abusing him physically.
(21:17):
You know everyone let him down,basically all at once.
So while I'm trying to becompassionate with him on this
and allowing him to heal, I'malso trying to make sure he
doesn't decline.
I don't want to be a bad mom.
You know you can't just pullyour kid out of school and let
him waste.
That's not what non-schoolingis.
So I wanted to keep that inperspective and the damn thing
(21:40):
of it is that he would not allowme to educate him.
He would not allow me to helphim in any way, even when I
found what I thought were thebest ways you know, little
videos on YouTube or levelingwith him human to human he just
won't have any of it Ever sincethat time of us taking
Wednesdays and Sundays off, hereally fell into this routine of
(22:03):
hating everything.
Every day that went by.
Another thing he used to lovehe hated and it was really hard
to deal with.
I mean, do you want to color?
No.
You want to go for a walk?
No.
Do you want to ride thefour-wheeler?
No, Just everything.
I mean everything that he everenjoyed.
Do you want to take a nap?
No, whatever.
(22:23):
You want to play with the dog?
You want to walk the dog?
You want to run Anythinganything?
No, no, no, no, no.
The only thing he would do iscome within about four to six
feet of us and scream and whineand scream and whine and scream
and whine and not use words, andjust mumble, just bullshit as
loud as possible.
And I think it was because wewere outside and he's trying to
(22:45):
fill up his space around him,which is never ending outside on
50 acres.
So we forced him to do thingslike hiking and wildlife
watching and stuff like that,but every minute of it sucked.
For the most part he had somefun with the hunting, voices and
stuff, but it was really hisdecision all the time he was
deciding.
I'm either going to be happy orI'm not.
(23:06):
I did pick that up from school,where they taught him to make
good choices, so that'ssomething that still resonates
with him today.
There are a few things thatwere good from school and making
good choices, helping himunderstand that he creates his
own reality by the choices thathe makes.
That decides what everyone elseis going to do, you know.
So instead of getting aid fromthe state, like I was trying to,
(23:29):
there was a waiting list.
Still it had not been fundedand I was out there looking for
theater groups and acting andstuff like that for special
needs kids.
I found a couple other outletsinstead.
So I found a nonprofitorganization for kids with
autism.
The lady that ran it wasactually referred to by many as
(23:50):
the autism whisperer, so I wasvery enthusiastic about that and
I did learn some things fromher and through her I found out
about other therapy programsthat may be available.
So I would bring him to herplace.
And at this place they had arunner and they had to lock the
door.
It was a retail kind of youknow brick and mortar location
(24:11):
and they had to lock the doorsall the time because they
couldn't have this kid runningout into traffic and now with
all these kids, I'll tell youabout them.
As time goes on there weredifferent things about each of
them and not one of them was thesame not one and we got to see
a lot of different perspectivesas far as medication and things
like that, and most of it wasvery scary.
(24:33):
So I start taking him to thisplace and it's mostly just play
therapy and I didn't reallyunderstand what they were doing.
All I knew was that she wasbetter with him than I was and
there were more people kind oflike him there than at my house
and he seemed to not like mevery much and I wanted, I had to
get stuff done and I justwanted him to have some kind of
(24:55):
outlet or inlet, I don't know,and I just wanted to bring him
in there.
So I would bring him in thereseveral days a week and she
pointed me towards this place inGreen Bay, wisconsin, called
the Cerebral Palsy Center.
We called it CP Center forshort and I started learning
about how to apply for him toreceive services.
I had never done this before.
(25:16):
I didn't know anything, Ididn't even know the
terminologies back then, so Ibegan the process of getting him
signed up to get evaluated forservices from the CP center.
I never realized that stufflike that goes on.
So if you are looking forsomething to help and you're not
finding it, his insurance itwas.
(25:36):
You know, it's just welfarestate insurance for the disabled
.
It covered his therapy there.
So maybe look into that.
If you have any kind oftreatment centers or therapy
centers for other conditionssuch as cerebral palsy or I
don't know what else, but maybeyou can find some and see if
they have anyone who isqualified and see if they're
(25:57):
interested in helping you out.
It really helped us out.
It was actually it didn'treally help us out, but it
helped us learn about our son.
It helped us learn about hispower over others professionals
in the field who areprofessionally trained with
accolades on dealing with peoplelike him and more severely
(26:17):
disabled than him, the power hehas over them and the way he's
able to manipulate anyone in thefield anyone.
There is no one who can competewith my son.
He is wily, he is prettyfucking slick and it is really
annoying because it doesn'tallow him to get any help, no
matter what.
These people are so qualifiedand they are angels.
(26:40):
They are amazing to be able towork with people like him and
people like the other kids thatI've met and people who are just
so disabled.
These people are saints in myeyes and they couldn't help him,
and I'll tell you more aboutthat in other episodes some of
the experiences that we had.
But that's what I reallylearned from putting him into
(27:00):
therapy at a cerebral palsycenter.
I learned that if he does notwant to be helped, he will not
be helped.
He will prevent you fromhelping him in any capacity.
All he wants is to be waited on, to be adored, to be looked at.
Look at me, look at me.
He actually says that all thetime.
Look at me, look at me, look atme, look at me, look at me.
(27:21):
And he's not doing anything.
Just look at me, look at me,look at me.
And if you're not doing that,then you know you're worthless.
If you have actually somethingof substance to create in his
life or to contribute to hislife in any way, he's not
interested and he will make surethat you have no opportunity to
help him.
It is maddening.
In my next episode I'm going togo into some detail on these
(27:43):
programs that I just mentioned,I got a funny little story.
I'm saving for next time too.
I have some stories here.
Things have been changing a lotlately.
As you know, he is now 24 andokay, so the birthday didn't go
well.
I cried all day, it wasterrible I think I mentioned
that and we made his cake.
His dad made a wonderful cakefor him and it was a very hard
(28:05):
day.
We didn't do balloons orbanners or a big blowout with
dinosaurs or superheroesdecorations or anything like
that.
We didn't do it.
We just went through themotions and got through the day,
and I can't say that I feel badabout it.
I just feel so tired.
I'm tired.
He's 24 and we've been throwingbirthday parties for a
(28:28):
five-year-old for years, for allthese years, and I'm just I'm
tired, especially when he isabusive during the day and then
wants the same damn treatment asif he has been good.
I'm so tired, I'm tired.
And these birthdays they're notanymore.
They're not fun.
You know it's hard, so that'sbeen going on, but some
(28:49):
interesting things have beenhappening and there was no full
moon when some of this stuffhappened, so I thought it was
worth noting.
So let me tell you a couplethings that have happened in the
past week.
Last week, after my spouse and Irecorded our episode, jacob
came down here while I wasfinishing up and saving
everything and I was the onlyone down here.
(29:10):
I had my back to him at my deskhere and he just came in and
they call me Rose or Rosiesometimes, and he says hey, rose
.
And I said hey, buddy, how areyou doing?
And he says oh, I just stressedout.
And I said you just stressedout.
He said yes.
I said well, um, if you want,you can go sit down on my couch
(29:30):
in there and relax.
And he didn't say a word.
He just walked in there quietlyand sat down and I thought that
was really grown up of him andvery suspicious as well, because
when he says something likethat and his dad and I were down
here that tells me that he andhis grandpa are at odds,
probably.
So I don't know.
And that was, yeah, I don'tknow.
That was weird.
We've been having someinteresting talking events
(29:52):
lately.
He's been getting up at strangehours and sleeping at strange
hours.
I mean he's up during you knowthe day and stuff, but he's just
been.
His schedule has been way off.
So his eating schedule is off,everything is off, it just
depends on when he gets up.
His schedule is becoming veryerratic.
It's starting to mimic hisgrandfather's schedule, their
(30:13):
schedule.
The grandfather and the unclethere are very erratic with
their timing of going to bed andwaking up.
I mean, sometimes they'll go tobed at seven o'clock at night,
other times they'll go to bed attwo o'clock in the morning and
I don't understand it.
But the damn thing of it is, ifthey stay up and they're in the
living room they're watching TV.
My son's door.
He's very sensitive and he hasbusted his door to where light
(30:35):
will seep through the doorpanels themselves.
But also, you know, it's morethan an inch off the ground and
he doesn't have carpet.
So a light goes in there nomatter what.
And now he's got, you know, I'msure rays of light can come in
Even if the hall light is off.
If these guys are in the livingroom past a certain hour with
the TV on, they've got thebiggest TV you've ever seen in
(30:55):
your life and it's in this smallass living room.
It puts out a lot of light.
I just think it keeps him up,and especially now that it's
winter and he doesn't have hiswindow, air conditioner running,
he can hear everything.
The walls are paper thin.
This house is not wellinsulated, so I just don't think
it's a very friendlyenvironment for him.
But there's no other way to doit and I can't get them to care.
(31:16):
So the only time the TV is at avery low level is if they're
watching it in the early, earlymorning.
It's still very bright, but atleast our son is probably
sleeping when they turn it onand it's not as bad.
But I think that their habitsmay be affecting his sleep
habits.
Anyhow, I go upstairs and he'stelling me he's hungry.
(31:37):
And it's a really weird time ofday.
He's been sleeping, going tosleep before lunch and then he
sleeps through lunch and then hewakes up at like 3 30 and
expects to eat lunch or dinner.
And I'm just like, dude, it'snot time for anything right now.
You can have a snack, but youmissed the boat.
Like I am not able to cook foryou right now.
That's not what time it is.
It doesn't work that way.
(31:57):
You have to stay up and eatlunch and then take a nap.
You know, it's just.
I'm sorry, buddy, and it's notgoing to work that way.
So he's been getting snacks ata strange time and then he eats
a couple hours later.
You know, I don't know.
Anyway, he was saying that hewas hungry at a really weird
time of day and I said, well, Iknew his dad fed him breakfast
and then I was at the gym for acouple hours.
(32:19):
So I didn't know what was goingon, you know, and I was trying
to feel it out and see if Icould get some answers from him.
So I ask him what did you haveto eat today?
Now, see, I used to ask himthat all the time he would come
home from school and I would say, hey, did you have a good day
at school?
And he would say yes, and Iwould say what did you have for
lunch?
Even though most of the time Ipacked his lunch, I still would
(32:41):
ask him.
Just to get him talking.
Some other times he would eatat school.
Before we were so picky aboutwhat we were eating.
You know, we were healthy butnot strict like we are now.
And I would always ask him, nomatter who made the lunch,
whether I knew what it was ornot, I would always ask him what
did you have for lunch?
And that would start theconversation and I would ask as
many questions as I could to gethim to talk as much as possible
(33:05):
.
So I still do that, even when Imake his lunch, you know.
So I said to him basically youknow what did you have for lunch
?
But I said, what did you eattoday?
And his grandpa almost decidesto answer.
He actually opened his mouthand made a sound.
I'm like dude, you know Iignored him, but he does that
all the time.
He loves to tattle on peopleand they also love to put words
(33:28):
in his mouth.
So I don't know if he wastrying to tattle on him or if he
just thought he was specialenough to answer for my son.
But I didn't know where to gethis answer from.
He didn't know what I wasasking him.
(33:50):
He didn't know if he wassupposed to respond.
I mean, it was just a reallyweird interaction.
So I asked him a milliondifferent ways what did you have
for breakfast, did you eatbreakfast?
And he just staring at me withhis mouth open, and I was giving
him plenty of time to come upwith an answer.
You know, but if you wait toolong he'll forget in the first
(34:11):
place what we're even doing.
So I was trying to keep himengaged, give him enough time to
come up with something, butalso keep it going before he
lost interest in theconversation.
So I'm going on and on.
What did you have for lunch?
I just asked him a milliondifferent ways.
I mean this goes on for likethree minutes, okay, and I
(34:36):
finally said, okay, I hadpotatoes for breakfast.
What did you have for breakfast?
And finally that's what works.
So he's like waffles.
And he actually did have lunch.
I didn't realize it becausethat's the last thing I knew was
that he got some waffles in themorning from his dad and he
usually would go with the lastthing he remembers eating,
because it's the easiest.
So since he picked waffles, Ithought okay, and I did ask him
(35:00):
what did you have for lunch?
And he said I don't know.
So I thought okay, nothing.
Then Did you not eat?
No, no, lunch.
No-transcript.
(35:35):
Let me.
Let me back up For reference.
I call the uncle Tweedledee andthe grandfather Tweedledum.
Together they are the Tweedles,okay.
So when I say that, that's whoI'm talking about, everyone in
my life has a nickname and it'sbased on their behavior.
And I told my spouse I think Ijust caught the Tweedles making
sport of Jacob, and this is whathappened the other day.
(36:01):
I went upstairs and I come upinto the kitchen.
Tweedledee is in the diningroom with his back to me and
Tweedledum is sitting in hisrecliner in the living room.
And I see my son walk past mein the kitchen and give
Tweedledum a piece of papertowel.
To me it looked like a regularpaper towel.
These are really crappy papertowels that they decided to buy
this time around and they don'trip right and they're very cheap
(36:23):
.
So that's's what he was handinghim and he was in the way of
Tweedledum being able to see me,and Tweedledee still had his
back to me and I was movingtowards the sink, which is
completely out of the line ofsight of both of them anyway.
So I'm moving there and I hearTweedledum say well, this isn't
(36:49):
going to help me, jacob, this isripped to shit.
This isn't even a paper towel.
And then I hear Tweedledee startchuckling and I hear Tweedledum
say can you get me a regularpaper towel now please?
And I silently have my mamabear signals going off, but I'm
keeping quiet.
I silently rip a regular sizepaper towel off and I took two
sections instead of these littlehalf sheets that they have.
Now I took a full paper toweland gave it to Jacob and while I
was doing that, tweedledeeturned around and he saw my son
(37:11):
getting the paper towel from meand then he starts saying yeah,
jacob, I gave you that papertowel, all ripped up like that,
to give to him because I thoughtit was going to be funny.
And he didn't have a papertowel, did he?
I messed, I was messing withhim, wasn't I?
Because I thought it was goingto be funny and he didn't have a
paper towel, did he?
I messed, I was messing withhim, wasn't I?
And I thought that was bullshit.
I thought that I just walked inon these two tag team and my
(37:32):
kid and making sport of him andit came to a stop because I was
standing there.
So I'm still pretty pissed offabout that.
I hate it when people do thatto my kid.
He is not there to be made funof.
He is not there to be put inweird situations to make fun of
him later for it.
He doesn't understand and it'snot fair to him.
He is simply giving you whatsomeone else gave him to give
(37:55):
you, and now you're.
You know it wasn't fucking coolat all.
Yeah, but he was fessing up outloud to my son.
Right after that, jacob goes inand sits down on the couch and
he very quietly said somethingto his grandpa.
You know, he said somethinglike hi, peppa, his grandpa says
hi.
And he said I didn't even hearhim.
He was talking so low to hisgrandpa and I was right in the
(38:16):
next room.
Normally you can heareverything, but he, purposely,
was talking so quietly and thenext thing I hear is his grandpa
saying no, no, don't scratchyour face, don't scratch your
face.
And he was in there threateningto scratch his face quietly to
his grandfather while I'mstanding in the kitchen, and he
made the motions.
I asked him later.
I was like what is this?
And he said well, he put hishands up on his head and acted
(38:38):
like he was scratching his faceand he said I'm sad, I'm
scratching faces, and that'sbeen his thing lately.
I'm sad, I'm scratching facesand I don't know.
I don't know why he's sofreaking sad.
But I will say that hisbehavior has been off the charts
since his birthday, which iswhen his grandmother came by and
forced her presence on him.
Ever since then, it's beenpretty bad.
(38:58):
So it was bad before, but nowit's really bad, and it's easy
for me to blame her, becauseshe's something that's not a
constant.
She was a new thing that cameinto his life and then left, and
usually three to five dayslater is when all the bullshit
starts coming out from his painthat is caused to him by these
people who do this to him.
So I don't know.
I don't know if it's him or ifit's because of her, but
(39:22):
something weird has been goingon with him lately.
Now, just yesterday, no, twodays ago I had another language
lesson with him in the kitchen.
I think it was harder than theone when I was asking him what
he had to eat that day, two daysago.
I was up there and he justbabbles stuff, you know, and so
he says superhero squad is whathe was saying.
(39:43):
That's not how he says it, butthat's what he was saying.
And I understood superhero.
And he would say superherosquad, superhero squad.
And I'm like what are yousaying?
And most of the time when I askhim that he'll start spelling
for me Usually he's pretty goodabout spelling and he might get
it jumbled up a little bit, buthe wouldn't even spell it.
He's been even not wanting tospell it, not wanting to correct
(40:06):
his speech at all.
He just says, oh sorry, andhe'll walk away.
And that really, really gets me.
I'm just trying to let him knowthat I care about what he's
saying and what's in his headand that I want to understand
him and that I would like othersto be able to understand him.
And he will not give me thetime of day with this
clarification anymore.
(40:26):
So I'm really at my wits endwith that.
But I was asking him what areyou saying, can you spell it?
And finally he starts spellingit and I just wanted to know the
last part.
But he had to spell the wholesuperheroes out.
And then he spells out squad.
So I'm working with him on thatbecause, additionally, he's
wrapping his lips around histeeth and keeping his mouth
(40:48):
closed while he does this, andso I'm working with him and I
was like, oh, that's squad.
And he says squaw.
And I said no, squad.
This went on and on and on.
I don't even know how manyminutes I stood there with him
trying to work on him sayingsquad.
But something interesting cameof it him trying to work on him
saying squad, but somethinginteresting came of it.
I got to where I was almostyelling.
I mean, I'm just so aggravatedat this point.
(41:10):
It's a fucking syllable.
Just say it, make the sound.
You know.
It's not squad, there's a D onthere.
Your name is not Jacob, it'sJacob.
There is a letter at the endand I need you to say it.
He just wasn't having it, butright when I was ready to pull
my own hair out, he says I don'tunderstand.
(41:32):
Huh, I was like, wow, awesome,thank you for telling me that.
I thought that you just werejust sucking so bad.
But anyway, I was like oh,thank you for telling me.
So I said there is a D, it'ssquad.
And I got really loud about itbecause at that point, like, how
do you, how can you notunderstand?
(41:53):
I'm showing you, I'm tellingyou, I'm forming the D with my
tongue, I'm doing all of thethings that I normally do.
What do you mean?
You don't understand.
But I was really excited thathe actually said that he doesn't
understand.
So anyway, I screamed it onemore time the D.
I spit the D out at the top ofmy lungs.
And then he said it properlySquad.
(42:15):
I was very happy with that, butit was hard.
I fought for that one reallyhard.
I had to really over enunciate,which I normally don't have to.
I mean I have to kind of, butthis was the hardest I think
I've ever worked on a word withhim ever, even worse than
(42:35):
Captain America.
It was the worst for me.
So those are the things thathave been going on, and we did
have one kind of interestingcomment that he made which I was
very excited about because itshowed a comprehension of the
surroundings and the situation.
He walked up to his dad here inthe little room down here and
his dad plays classical guitar.
So he said hey, dad, what's up?
(42:56):
And his dad didn't say anythingbecause he was playing the
guitar.
And Jacob said playing guitar,playing guitar.
That was very simple, but thatwas very cool because normally
he does not have situationalawareness, it seems, and he
doesn't give a shit what you'redoing and he'll act like he
doesn't know what it's called,and so I was really happy with
that.
I mean, these are tiny littlewins and if you're not paying
(43:19):
attention you could miss them.
When things are just unbearable,as they have been with us again
lately, it's these littlethings that I try to make note
of, and I try to appreciate inthe moment, because I'm so
consumed with how hardeverything is all the time and
it's really easy for me to justblow right by that and overlook
(43:40):
it and not even stop to smellthe flowers.
I wouldn't have even stopped torecognize that this was pretty
monumental.
It wasn't just a couple ofwords.
It was a couple of wordsshowing situational awareness
and showing that he knew theanswer.
When you know what are youdoing?
What's up?
I see what you're doing.
(44:01):
Is this what you're doing?
Doing what's up?
I see what you're doing.
Is this what you're doing?
And yes, as a matter of fact itis.
And he didn't harp on it either.
Usually he'll.
If he picks up on anything orsays anything to one of us, he
won't stop saying it Play guitar, play guitar, play guitar, play
guitar, play guitar.
Dad, dad, dad, are you playingguitar?
You know?
So it was a really interestingconversational transaction.
(44:22):
I guess I just thought it waspretty cool Every once in a
while.
That's all you got, you know.
I would love to know if youenjoyed my husband and I doing
the podcast together.
He loves what I'm doing.
He knows that I need to do it.
I feel called.
I have some solutions that I'mputting together and I just feel
called to do this podcast forpeople to share because we're so
(44:45):
marginalized and we're soscrewed.
You know he's interested incontributing more to the podcast
episodes periodically, so Iwould like to know if you guys
care one way or the other, or ifyeah, yeah, I do want to hear
from him again, or no, it's okay, or whatever.
If you have any input, I'm veryinterested in hearing it.
He thought maybe we could talkabout the strain that this
(45:08):
lifestyle has on relationshipswith couples, parents, things
like that.
I know that I touch on it a lot, I mention it a lot, but he
thought maybe we could just doan episode on it.
So if you guys have any input,please let me know.
I hope that these episodes arehelpful in some way.
I always try to reminisce onsomething from the past and tell
you something from myexperiences at this time of life
(45:29):
that we're concentrating on,and then move into something
more current.
So hopefully this format isworking well for you.
I got a significant number ofdownloads on Christmas Day, all
the way through the night, andwhile that is exciting, it's
also very saddening.
I hope you guys are doing wellout there.
It's been really hard for melately and I know it's hard for
(45:51):
everybody all the time andthere's always someone who's
having a worse time than me andall that jazz.
But I'm just saying it's beenhard and I want you guys to know
that I'm always out herethinking that.
You know, I wonder if it's hardfor them out there.
I wonder how they're doing, Iwonder how Christmas went.
I wonder if everyone is safe,and I hope everyone is, you know
, just happy and being able toenjoy their family a little bit
(46:14):
here and there and I mean byfamily I generally mean your kid
, because there is no one else,most likely, at least you know,
for most of us.
So I still have hope.
It dwindles sometimes and sinceI'm having a hard time ending on
a positive note, I think thatif you've ever seen the penguin
sing You've Got a Friend in Meon Toy Story you could imagine a
(46:35):
little kid with autism andhardly any words performing
exactly the same moves as thepenguin.
And if you haven't seen it, youshould watch it on YouTube.
Just that little scene.
Maybe that'll cheer you up.
In my next episode I'll go intodetail about these therapy
programs that I found and someof the experiences that we had
(46:58):
while we were searching andwaiting for services to come
available for him.
Thank you so much for listening.
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.
If you have comments orquestions, you have two ways you
can reach me.
If you go to my PSA - short forParenting Severe Autism - psa.
buzzsprout.
comThat's the hosting site for my
actual podcast before it getssent out to all the other
(00:40):
platforms.
So from that site you can clickon fan mail and I don't believe
there is a charge to send meany messages, so you could do it
that way.
You'll also find multiple waysto support the podcast.
If you're interested in that,you could find little donation
icons on your podcast player onyour device, or you can check
out the links once you are on myBuzzsprout site.
(01:04):
Additionally, you can contactme via email at contact.
parentingsevereautism@ gmail.
com.
The most important thing isthat you are here listening to
these episodes and sharing them,hopefully, especially if one
resonates with you, and that'sthe best thing we can do for
ourselves in our exclusive,marginalized little community
here.
(01:24):
So thank you so much forlistening and sharing my podcast
with others.
So, picking up where we left off, we are in the middle of
attempting non-schooling Torefresh your memory.
Non-schooling, as I understoodit was a way to basically detox
the child from the traditionalmethods of schooling in public
and private education systems.
(01:45):
So since our son appeared sodamaged from his experience at
his most recent school and wehad to pull him out of school,
we signed homeschoolingpaperwork but decided to pursue
the non-schooling for the firstsix months to a year, just to
give him a chance.
I mean, I didn't feel rightjust pulling him out from one
institution and putting him intoanother, so to speak, by making
(02:07):
him sit at the kitchen tablefor how many hours a day doing
the same things that he did atschool.
He just really seemed like heneeded a restructuring in his
life and we just wanted him tobe his happy, bubbly self again.
So this was the route that wechose.
So with non-schooling, you'rebasically allowing the child to
experience life as it comes atthem.
(02:28):
And you know, with his autism,if he is allowed to do what he
wants, he'll just stand in onespot in his bedroom all day and
shuffle his feet and hum.
So life would not come at himand he would experience nothing.
So I kept trying to get him outin the world, out on the
property we had, all thisproperty.
We would take him for hikes andhis dad would take him for
four-wheeler rides.
(02:49):
We would take him stalkingwildlife to pretend that he was
hunting.
This is where he learnedhunting voices from dad
accustomed to the previoustenants not going outside ever,
so they had no idea, basically,what humans were on our property
.
It was really easy to sneak upon the deer.
(03:13):
We had porcupines and some ofour family was able to see
bobcats.
We had bears.
There was a wolf track foundseveral years in a row Not a lot
of them.
We had foxes, a ton of differentwild birds.
We had wild turkey and grouseand goose and just all kinds of
fun stuff, and I think we hadotters.
(03:33):
We had a beaver, it was just.
It was really cool, you know.
So we thought, well, we'll justtake him out and introduce him
to nature, and we had a couplelittle spots in the woods where
we set it up for picnics andstuff.
We found some really beautifulspots and we thought we would
just try to let him absorbnature, because that's what all
of us are missing.
You should try it too.
Take your shoes off and gostand on Mother Earth.
(03:55):
It's really been helping us andit seems to calm him down.
I don't know if I mentionedthat before, but it wasn't a
part of our lives at thisnon-schooling point.
But it is a part of our livesnow because we don't get enough
nature anymore.
So maybe give that a shot.
So what you know, what are yousupposed to do with this kid if
you don't educate himtraditionally?
And he doesn't?
(04:16):
You know, he just he's nothappy.
So I started thinking back onhis interests, because he's not
that different from any of us.
If we're not doing somethingthat we enjoy, we're not as
happy as we could be.
Well, he's just a little moreextreme to where he's just not
happy if he's not doingsomething he enjoys.
So far we know that he enjoysvideo games, watching movies on
(04:41):
repeat in specific spots,shuffling his feet in his room
and that's about it, and thenthrowing little pissy fits all
the time, no matter what if wetried to get him to do something
that was outside of the realmthat he is accustomed to that I
just named.
So it was a little bit of achallenge.
But I started thinking aboutsome stuff and, as I've
mentioned before, jacob isreally great at sound effects
(05:04):
and he loves acting out scenes.
I remember back when he wasprobably seven years old've Got
a Friend in Me and we were alljust sitting there as a family
(05:27):
unit watching this movie.
For the umpteenth time Out ofthe blue, jacob jumps up from
his seat with his dad on thecouch.
He's laying around in hisunderwear.
So he jumps up off the couchand grabs this tiny little
orange microphone that I'venever seen him play with before.
His toys were everywhere, but Inever really saw him play with
any toys.
(05:47):
So he jumps up and he grabsthis little microphone at the
perfect time and starts loungesinging kind of and basically
imitating the penguin.
The moves were perfect.
It was at the exact right timing, from the time he flew off the
couch, picked up the thing andwent into character and he sang
the best that timing, from thetime he flew off the couch,
picked up the thing and wentinto character and he sang the
best that he could, the wholesong You've Got a Friend in Me.
(06:10):
He couldn't pronounce the words, of course, but he likes to
make a noise.
It's kind of like humming, butwe knew what he was doing and
mostly it was expressive, verymuch in the face and acting out
in the body, and it was lovely.
It was so entertaining andshocking that he did that.
I mean, we've never seen him dothat before.
So that is something that was atthe forefront of my mind when I
(06:34):
was trying to think of whatdoes this kid even like that I
could substitute in place of anactual school education?
So I thought well, he lovesacting and he loves doing voices
, so he loves acting out scenesfrom movies with his dad as well
.
I mean, he's got quite a range,you know, of course.
He's got Full Metal Jacket andToy Story, he's got the Lion
(06:55):
King, emperor's New Groove Cars,scarface, scooby-doo just every
movie that they've ever seen.
I mean just every movie thatthey've ever seen.
I mean he just watches them allon repeat and he and his dad
have a routine with each andevery movie that they watch
together.
They can recite back and forthwhole parts of the movie
Hunchback of Notre Dame,everything that he has ever seen
(07:18):
, if his dad has seen it withthem.
They have a little routine andit's adorable.
So I thought you know what?
Why don't I try to find like aspecial needs theater group or
something?
And suddenly I am excited.
I'm like, yes, this is gonna beit.
So my search started for sometype of entertainment group like
(07:38):
that that accepts special needskids and allows them to express
themselves through acting andsong, even if they suck at it.
That's why I needed it to befor special needs kids and
allows them to expressthemselves through acting and
song, even if they suck at it.
That's why I needed it to befor special needs.
You know, you can't expectevery kid to be a performer, but
every kid deserves to have anoutlet.
Every kid deserves to have alittle bit of fun and do the
things that they enjoy doing,especially our kids.
(08:01):
So I just thought that wasgreat and the hunt was on for
that.
It took a really long time forme to come up with anything.
As a matter of fact, I wasreally discouraged after about
the first six months ofsearching, but that was one of
my ideas for his newnon-schooling lifestyle.
So in the meantime he was justbecoming more and more of a
(08:21):
nightmare for us and I didn'tknow what to do.
He was getting so bad.
We decided to make sure we weretaken two days off a week.
We never really did, because Iworked and kept him with me in
the office all the time and theoffice was like a second home
for us.
He had his own room with a bedand everything, a TV game system
(08:42):
.
We had a kitchen.
I mean it was perfect.
It was almost like I wasn'tworking working, except that I
needed to have my quiet time towork and I gave him that same
quiet time to play and do whathe wanted to do.
So it was a really good setup.
We took holidays off that werekind of forced holidays, but we
worked every chance we gotbecause we were trying to get
ahead and we were trying tobuild a business from the ground
(09:03):
up.
Anyhow, when we pulled him outof school we realized that you
know what?
We need to be more deliberateabout everything now, because
he's not going to be in school.
He's going to notice if we'reworking all the time.
So life is different and weneed to make some changes.
So we decided to take two daysoff a week and in the business
(09:24):
of sales, taking two days off ina row is not the greatest idea.
So we took our slowest days.
We researched all of ourcalendars and came up with well,
wednesday and Sunday are thebest days for us to take off.
Wednesdays and Sundays were forfamily time.
We would demand to have a fewhours in the morning just to
(09:45):
ourselves to actually getcomfortable and shake off any
feeling of needing to work.
You know, just have your coffee, relax, get into a different
mindset, get some stuff done.
You know, just regular people,day off type stuff, right.
So Wednesdays and Sundays.
Now, as soon as we made thatdecision, we also realized that,
(10:05):
you know, he doesn't reallyhave much of an interest in
having us designate two days ina row to family time either.
He is really not a fan of us atthis time.
So we thought, well, it'sprobably going to work out
perfectly for everyone becauseit'll give him a break and then
a few days later he gets to hangout with us again and then he
(10:26):
can do his own thing.
And so it just seemed like itwas going to work out.
As soon as we implemented thisnew plan, we didn't even
actually tell him and maybe thatwas where we went wrong is we
didn't tell him our actual planand he just started realizing
that on these two days of theweek we were in his face more
than usual, and maybe that'sbullshit to him.
(10:46):
He was just pissed.
So every single Wednesday andSunday morning we would go
outside and have our coffee andenjoy the wildlife and
everything, and he would get up.
As soon as he knew that we wereenjoying ourselves, knew that we
were enjoying ourselves, hewould run outside and just
(11:07):
commence to screaming at us andwhining and, using no words that
he had in his vocabulary, he'llbare his teeth and make this
real whiny, pouty face and thenopen his mouth really big like a
scream mask and then just makethis awful high-pitched, you
know, and he would do this forhours.
No matter how we addressed it,he would not stop.
(11:29):
He just refused to allow us tohave our Wednesday and Sunday.
We never once, in four years ofhaving Wednesdays and Sundays
off, got to enjoy one of thosedays Never once.
He would not allow it and hehad it timed perfectly.
We didn't even tell him whatday it was, he would just do it
(11:50):
Every single light clockworkWednesday and Sunday.
It was freaking terrible and itgot so bad so quickly that I
started to research online, youknow, because I hadn't met
anyone else who could help us.
Now I'm on YouTube looking forideas and reasons and solutions
and everything you know.
(12:10):
Well, everything was justreally superficial information,
really dumb, just people talkingheads saying stuff without
saying stuff and making aYouTube channel with it, and it
was just garbage information.
None of it, none of it wasuseful, not one piece.
(12:32):
Finally, I ran across a ladyand I have told you about her
before and I don't know her name.
I never found any of her othervideos.
I got the answer I needed, theanswer that I was looking for.
It just resonated with me wasthat, hey, when your kid, with
autism basically, is being ajerk anytime, that they're
actually acting inappropriatelyand it's affecting you
negatively, you need to tellthem what is going on.
(12:56):
She said the best thing to dois to calmly address them like a
regular person, because that'show you want them to understand
their own place in the world.
I view you as a regular person.
You are not a special needsperson to me at this time.
You are the child, I am theadult, but you are a regular
(13:16):
person.
So it's that kind of mindsetand she just said you have to
tell them how it makes you feel.
You have to sit them down, gettheir attention the best that
you can and tell them when youmake this noise, that gives me a
headache, it makes my head hurtand that makes me sad or that
(13:38):
makes me feel very angry,because sometimes you're going
to have them do something andyou're just going to snap out,
and I snapped out yesterday.
It's going to happen.
So not everything that they dois going to make you feel
exactly the same way, and that'sthe reason that we need to
communicate it to them and havethem understand that what you do
(13:59):
creates a ripple effect in thisworld.
I am part of your world.
I get that first ripple andthis is how it makes me feel.
I don't like it.
So I adopted that very quicklyand every single time he would
do something to irritate me, Iwould say, jacob, when you blank
(14:19):
, blank, blank, it makes me feelblank, blank, blank.
And I would say for the firsthandful of times he looked
shocked or dumbfounded that Iwas actually speaking to him
like a regular person and that Iwas sharing with him how I felt
and what it was that he wasdoing that was making me feel
(14:41):
that way and why I was going toreact the way that I was.
So I thought, yeah, this isgreat.
He just had this dumbfoundedlook.
I don't know that he understoodeverything that I was saying,
but he, at least, was trying toabsorb and adjust to hey, she's
not like scolding me, she'sactually she's.
Why is she talking to me likethis, you know, and almost as if
(15:04):
he couldn't believe that I wasrevealing my feelings to him,
and it actually.
He is a little bit compassionatesometimes and I think it
actually affected him.
After about five or ten timesof it, though, I would say,
jacob, when you and he wouldinsulate and just start whining
and basically whining over myvoice and screaming and doing
(15:28):
all the noises that he couldpossibly do, and then it started
to become physical as well, andeventually he would counter my
attempt with a fucking fullmeltdown.
So it didn't work.
After a while, and this becamehis MO, I would learn something
and start to use it to counterwhat he was doing that was
(15:50):
hurting me or hurting the familyor causing strife in one area
of life or the other, and hewould adapt and overcome.
Whether it was talking over meor yelling over me or having a
full meltdown or just wising upto whatever the change is that
we made, he would adapt andovercome and get back to doing
exactly what it is that we weretrying to stop.
(16:13):
This became the constant andI'm racking my brain for weeks
now trying to remember morespecifics, but they were.
I call them the nickel and dimeshit, because in between all the
big shit was this nickel anddime bullshit that just eats
away at whatever you have leftin between all the big things
(16:33):
that you have to deal with withhim.
I'm having a lot of troublecurrently remembering the nickel
and dime crap, but I will throwit in there anytime I can.
But the main point is thatanytime he would do something
and we would come up with a wayto prevent him from doing it, he
would come up with a way aroundit to get back to doing it.
And it was maddening.
(16:54):
It was every, every singlething in life, all of it.
This applies, it is I can't.
I mean it just sucks.
So anyway, it was a great ideaand I still do it to him and he
actually hates it.
He does not give one flyingfuck how I feel about what he's
doing until he's ready to care.
(17:16):
Then he'll be like oh, are youokay?
Then he'll say I feel bad.
I'm sorry, but the biggestthing that works right now is
just to stop talking to him andstop responding, and he actually
really hates that, but he hatesit differently and he tries
really hard to get in my goodgraces again, even though he
knows when I'm done talking tohim, I'm done for the day.
(17:39):
It's over and I'll try againtomorrow.
That's I have to remove myself,but he tries like hell the
whole rest of the day to get meto talk to him.
So that's my new psychologicalwarfare that's going on for the
past few years.
So after he started resistingthat, I thought, well, here's
something we can do.
Maybe I can look on this iPadand see what other apps are
(18:02):
available for homeschooling, youknow.
So I started looking intospeech therapy and I found a
conversation app.
I found a couple different ones.
I downloaded them and startedtrying to make that part of his
daily educational diet, becauseyou can't let up on that, even
though you're non-schooling.
That's different.
Learning math and whether it'ssunny or cloudy outside, and how
(18:24):
to sit still in your seat andhow to ask to go to the bathroom
that's school, but speech wedon't want to lose that.
He had 150 words and I wantedto at least keep it that way
until I could find something tohelp him.
So I get this conversation appand he hated it.
He hated every single one ofthem.
He would not, freaking, do it.
(18:45):
They were cool, they would havemultiple choice.
They would give you a situation.
So now it's listening to thestory and comprehending the
question, the story and thequestion and then choosing the
right action.
And he was just guessing hisway through it.
Just tap the screen and get onwith it.
You know, if you get it wrongyou get another try.
It's not that hard.
So he worked his way aroundthat and never did learn
(19:07):
anything.
And he always, to this day,will start complaining if we're
trying to get him off of hisautism rotation of echolalia.
He'll go oh, conversation,conversation and he'll start
yelling at me about conversation.
So that did not make a greatimpression on him.
But I stuck to my guns and Imade him do it as often as
(19:29):
possible and I didn't care if hefought me on it because you
know, damn it, man, I am tryingto help you.
I can't just let you waste awayand I can't put you in that
school and I don't know what todo.
So I'm doing the best I canright now.
I just want you to heal.
You know he was emotionallydamaged.
He has trusted everyone in hiswhole life and it seems like in
(19:51):
one 12 month period, everyone heever trusted let him down and I
felt terrible for him.
So I try to look at it frompossibly his perspective.
You know, I think we let himdown when we left him with his
grandma and grandpa for so long,even though we thought
everything was going to be fineand even though his dad would
give him the option all the timeon the phone do you want to
(20:13):
come home or do you want to staywith Mamaw and Peppa?
And he would say, I want tostay?
And we would say okay.
But I think that obviously theylet him down because he was so
unhappy and collapsing on mewhen we finally got him in the
parking lot that day.
So I think that he felt that welet him down.
His grandparents let him down.
I think he felt that his sisterand his mom let him down
(20:34):
because he never should havebeen with them in the first
place.
And the only thing that everleaves him is hurt in his heart
because that woman doesn't evergive him closure.
She just pops into his life andthen pops right out without
even saying bye.
Give him closure.
She just pops into his life andthen pops right out without
even saying bye.
So all of that happened in atwo-month frame of time.
And then we send him into schooland he's always trusted all the
(20:56):
people at school, even thoughit's a new school.
He trusts you.
He never, ever mistrustedanyone.
You know, he just loveseveryone and he goes there and
we trust the educators with ourchild.
He also trusts them withhimself, and here they are
forcing him into situations thathurt his sensory processing and
abusing him physically.
(21:17):
You know everyone let him down,basically all at once.
So while I'm trying to becompassionate with him on this
and allowing him to heal, I'malso trying to make sure he
doesn't decline.
I don't want to be a bad mom.
You know you can't just pullyour kid out of school and let
him waste.
That's not what non-schoolingis.
So I wanted to keep that inperspective and the damn thing
(21:40):
of it is that he would not allowme to educate him.
He would not allow me to helphim in any way, even when I
found what I thought were thebest ways you know, little
videos on YouTube or levelingwith him human to human he just
won't have any of it Ever sincethat time of us taking
Wednesdays and Sundays off, hereally fell into this routine of
(22:03):
hating everything.
Every day that went by.
Another thing he used to lovehe hated and it was really hard
to deal with.
I mean, do you want to color?
No.
You want to go for a walk?
No.
Do you want to ride thefour-wheeler?
No, Just everything.
I mean everything that he everenjoyed.
Do you want to take a nap?
No, whatever.
(22:23):
You want to play with the dog?
You want to walk the dog?
You want to run Anythinganything?
No, no, no, no, no.
The only thing he would do iscome within about four to six
feet of us and scream and whineand scream and whine and scream
and whine and not use words, andjust mumble, just bullshit as
loud as possible.
And I think it was because wewere outside and he's trying to
(22:45):
fill up his space around him,which is never ending outside on
50 acres.
So we forced him to do thingslike hiking and wildlife
watching and stuff like that,but every minute of it sucked.
For the most part he had somefun with the hunting, voices and
stuff, but it was really hisdecision all the time he was
deciding.
I'm either going to be happy orI'm not.
(23:06):
I did pick that up from school,where they taught him to make
good choices, so that'ssomething that still resonates
with him today.
There are a few things thatwere good from school and making
good choices, helping himunderstand that he creates his
own reality by the choices thathe makes.
That decides what everyone elseis going to do, you know.
So instead of getting aid fromthe state, like I was trying to,
(23:29):
there was a waiting list.
Still it had not been fundedand I was out there looking for
theater groups and acting andstuff like that for special
needs kids.
I found a couple other outletsinstead.
So I found a nonprofitorganization for kids with
autism.
The lady that ran it wasactually referred to by many as
(23:50):
the autism whisperer, so I wasvery enthusiastic about that and
I did learn some things fromher and through her I found out
about other therapy programsthat may be available.
So I would bring him to herplace.
And at this place they had arunner and they had to lock the
door.
It was a retail kind of youknow brick and mortar location
(24:11):
and they had to lock the doorsall the time because they
couldn't have this kid runningout into traffic and now with
all these kids, I'll tell youabout them.
As time goes on there weredifferent things about each of
them and not one of them was thesame not one and we got to see
a lot of different perspectivesas far as medication and things
like that, and most of it wasvery scary.
(24:33):
So I start taking him to thisplace and it's mostly just play
therapy and I didn't reallyunderstand what they were doing.
All I knew was that she wasbetter with him than I was and
there were more people kind oflike him there than at my house
and he seemed to not like mevery much and I wanted, I had to
get stuff done and I justwanted him to have some kind of
(24:55):
outlet or inlet, I don't know,and I just wanted to bring him
in there.
So I would bring him in thereseveral days a week and she
pointed me towards this place inGreen Bay, wisconsin, called
the Cerebral Palsy Center.
We called it CP Center forshort and I started learning
about how to apply for him toreceive services.
I had never done this before.
(25:16):
I didn't know anything, Ididn't even know the
terminologies back then, so Ibegan the process of getting him
signed up to get evaluated forservices from the CP center.
I never realized that stufflike that goes on.
So if you are looking forsomething to help and you're not
finding it, his insurance itwas.
(25:36):
You know, it's just welfarestate insurance for the disabled
.
It covered his therapy there.
So maybe look into that.
If you have any kind oftreatment centers or therapy
centers for other conditionssuch as cerebral palsy or I
don't know what else, but maybeyou can find some and see if
they have anyone who isqualified and see if they're
(25:57):
interested in helping you out.
It really helped us out.
It was actually it didn'treally help us out, but it
helped us learn about our son.
It helped us learn about hispower over others professionals
in the field who areprofessionally trained with
accolades on dealing with peoplelike him and more severely
(26:17):
disabled than him, the power hehas over them and the way he's
able to manipulate anyone in thefield anyone.
There is no one who can competewith my son.
He is wily, he is prettyfucking slick and it is really
annoying because it doesn'tallow him to get any help, no
matter what.
These people are so qualifiedand they are angels.
(26:40):
They are amazing to be able towork with people like him and
people like the other kids thatI've met and people who are just
so disabled.
These people are saints in myeyes and they couldn't help him,
and I'll tell you more aboutthat in other episodes some of
the experiences that we had.
But that's what I reallylearned from putting him into
(27:00):
therapy at a cerebral palsycenter.
I learned that if he does notwant to be helped, he will not
be helped.
He will prevent you fromhelping him in any capacity.
All he wants is to be waited on, to be adored, to be looked at.
Look at me, look at me.
He actually says that all thetime.
Look at me, look at me, look atme, look at me, look at me.
(27:21):
And he's not doing anything.
Just look at me, look at me,look at me.
And if you're not doing that,then you know you're worthless.
If you have actually somethingof substance to create in his
life or to contribute to hislife in any way, he's not
interested and he will make surethat you have no opportunity to
help him.
It is maddening.
In my next episode I'm going togo into some detail on these
(27:43):
programs that I just mentioned,I got a funny little story.
I'm saving for next time too.
I have some stories here.
Things have been changing a lotlately.
As you know, he is now 24 andokay, so the birthday didn't go
well.
I cried all day, it wasterrible I think I mentioned
that and we made his cake.
His dad made a wonderful cakefor him and it was a very hard
(28:05):
day.
We didn't do balloons orbanners or a big blowout with
dinosaurs or superheroesdecorations or anything like
that.
We didn't do it.
We just went through themotions and got through the day,
and I can't say that I feel badabout it.
I just feel so tired.
I'm tired.
He's 24 and we've been throwingbirthday parties for a
(28:28):
five-year-old for years, for allthese years, and I'm just I'm
tired, especially when he isabusive during the day and then
wants the same damn treatment asif he has been good.
I'm so tired, I'm tired.
And these birthdays they're notanymore.
They're not fun.
You know it's hard, so that'sbeen going on, but some
(28:49):
interesting things have beenhappening and there was no full
moon when some of this stuffhappened, so I thought it was
worth noting.
So let me tell you a couplethings that have happened in the
past week.
Last week, after my spouse and Irecorded our episode, jacob
came down here while I wasfinishing up and saving
everything and I was the onlyone down here.
(29:10):
I had my back to him at my deskhere and he just came in and
they call me Rose or Rosiesometimes, and he says hey, rose
.
And I said hey, buddy, how areyou doing?
And he says oh, I just stressedout.
And I said you just stressedout.
He said yes.
I said well, um, if you want,you can go sit down on my couch
(29:30):
in there and relax.
And he didn't say a word.
He just walked in there quietlyand sat down and I thought that
was really grown up of him andvery suspicious as well, because
when he says something likethat and his dad and I were down
here that tells me that he andhis grandpa are at odds,
probably.
So I don't know.
And that was, yeah, I don'tknow.
That was weird.
We've been having someinteresting talking events
(29:52):
lately.
He's been getting up at strangehours and sleeping at strange
hours.
I mean he's up during you knowthe day and stuff, but he's just
been.
His schedule has been way off.
So his eating schedule is off,everything is off, it just
depends on when he gets up.
His schedule is becoming veryerratic.
It's starting to mimic hisgrandfather's schedule, their
(30:13):
schedule.
The grandfather and the unclethere are very erratic with
their timing of going to bed andwaking up.
I mean, sometimes they'll go tobed at seven o'clock at night,
other times they'll go to bed attwo o'clock in the morning and
I don't understand it.
But the damn thing of it is, ifthey stay up and they're in the
living room they're watching TV.
My son's door.
He's very sensitive and he hasbusted his door to where light
(30:35):
will seep through the doorpanels themselves.
But also, you know, it's morethan an inch off the ground and
he doesn't have carpet.
So a light goes in there nomatter what.
And now he's got, you know, I'msure rays of light can come in
Even if the hall light is off.
If these guys are in the livingroom past a certain hour with
the TV on, they've got thebiggest TV you've ever seen in
(30:55):
your life and it's in this smallass living room.
It puts out a lot of light.
I just think it keeps him up,and especially now that it's
winter and he doesn't have hiswindow, air conditioner running,
he can hear everything.
The walls are paper thin.
This house is not wellinsulated, so I just don't think
it's a very friendlyenvironment for him.
But there's no other way to doit and I can't get them to care.
(31:16):
So the only time the TV is at avery low level is if they're
watching it in the early, earlymorning.
It's still very bright, but atleast our son is probably
sleeping when they turn it onand it's not as bad.
But I think that their habitsmay be affecting his sleep
habits.
Anyhow, I go upstairs and he'stelling me he's hungry.
(31:37):
And it's a really weird time ofday.
He's been sleeping, going tosleep before lunch and then he
sleeps through lunch and then hewakes up at like 3 30 and
expects to eat lunch or dinner.
And I'm just like, dude, it'snot time for anything right now.
You can have a snack, but youmissed the boat.
Like I am not able to cook foryou right now.
That's not what time it is.
It doesn't work that way.
(31:57):
You have to stay up and eatlunch and then take a nap.
You know, it's just.
I'm sorry, buddy, and it's notgoing to work that way.
So he's been getting snacks ata strange time and then he eats
a couple hours later.
You know, I don't know.
Anyway, he was saying that hewas hungry at a really weird
time of day and I said, well, Iknew his dad fed him breakfast
and then I was at the gym for acouple hours.
(32:19):
So I didn't know what was goingon, you know, and I was trying
to feel it out and see if Icould get some answers from him.
So I ask him what did you haveto eat today?
Now, see, I used to ask himthat all the time he would come
home from school and I would say, hey, did you have a good day
at school?
And he would say yes, and Iwould say what did you have for
lunch?
Even though most of the time Ipacked his lunch, I still would
(32:41):
ask him.
Just to get him talking.
Some other times he would eatat school.
Before we were so picky aboutwhat we were eating.
You know, we were healthy butnot strict like we are now.
And I would always ask him, nomatter who made the lunch,
whether I knew what it was ornot, I would always ask him what
did you have for lunch?
And that would start theconversation and I would ask as
many questions as I could to gethim to talk as much as possible
(33:05):
.
So I still do that, even when Imake his lunch, you know.
So I said to him basically youknow what did you have for lunch
?
But I said, what did you eattoday?
And his grandpa almost decidesto answer.
He actually opened his mouthand made a sound.
I'm like dude, you know Iignored him, but he does that
all the time.
He loves to tattle on peopleand they also love to put words
(33:28):
in his mouth.
So I don't know if he wastrying to tattle on him or if he
just thought he was specialenough to answer for my son.
But I didn't know where to gethis answer from.
He didn't know what I wasasking him.
(33:50):
He didn't know if he wassupposed to respond.
I mean, it was just a reallyweird interaction.
So I asked him a milliondifferent ways what did you have
for breakfast, did you eatbreakfast?
And he just staring at me withhis mouth open, and I was giving
him plenty of time to come upwith an answer.
You know, but if you wait toolong he'll forget in the first
(34:11):
place what we're even doing.
So I was trying to keep himengaged, give him enough time to
come up with something, butalso keep it going before he
lost interest in theconversation.
So I'm going on and on.
What did you have for lunch?
I just asked him a milliondifferent ways.
I mean this goes on for likethree minutes, okay, and I
(34:36):
finally said, okay, I hadpotatoes for breakfast.
What did you have for breakfast?
And finally that's what works.
So he's like waffles.
And he actually did have lunch.
I didn't realize it becausethat's the last thing I knew was
that he got some waffles in themorning from his dad and he
usually would go with the lastthing he remembers eating,
because it's the easiest.
So since he picked waffles, Ithought okay, and I did ask him
(35:00):
what did you have for lunch?
And he said I don't know.
So I thought okay, nothing.
Then Did you not eat?
No, no, lunch.
No-transcript.
(35:35):
Let me.
Let me back up For reference.
I call the uncle Tweedledee andthe grandfather Tweedledum.
Together they are the Tweedles,okay.
So when I say that, that's whoI'm talking about, everyone in
my life has a nickname and it'sbased on their behavior.
And I told my spouse I think Ijust caught the Tweedles making
sport of Jacob, and this is whathappened the other day.
(36:01):
I went upstairs and I come upinto the kitchen.
Tweedledee is in the diningroom with his back to me and
Tweedledum is sitting in hisrecliner in the living room.
And I see my son walk past mein the kitchen and give
Tweedledum a piece of papertowel.
To me it looked like a regularpaper towel.
These are really crappy papertowels that they decided to buy
this time around and they don'trip right and they're very cheap
(36:23):
.
So that's's what he was handinghim and he was in the way of
Tweedledum being able to see me,and Tweedledee still had his
back to me and I was movingtowards the sink, which is
completely out of the line ofsight of both of them anyway.
So I'm moving there and I hearTweedledum say well, this isn't
(36:49):
going to help me, jacob, this isripped to shit.
This isn't even a paper towel.
And then I hear Tweedledee startchuckling and I hear Tweedledum
say can you get me a regularpaper towel now please?
And I silently have my mamabear signals going off, but I'm
keeping quiet.
I silently rip a regular sizepaper towel off and I took two
sections instead of these littlehalf sheets that they have.
Now I took a full paper toweland gave it to Jacob and while I
was doing that, tweedledeeturned around and he saw my son
(37:11):
getting the paper towel from meand then he starts saying yeah,
jacob, I gave you that papertowel, all ripped up like that,
to give to him because I thoughtit was going to be funny.
And he didn't have a papertowel, did he?
I messed, I was messing withhim, wasn't I?
Because I thought it was goingto be funny and he didn't have a
paper towel, did he?
I messed, I was messing withhim, wasn't I?
And I thought that was bullshit.
I thought that I just walked inon these two tag team and my
(37:32):
kid and making sport of him andit came to a stop because I was
standing there.
So I'm still pretty pissed offabout that.
I hate it when people do thatto my kid.
He is not there to be made funof.
He is not there to be put inweird situations to make fun of
him later for it.
He doesn't understand and it'snot fair to him.
He is simply giving you whatsomeone else gave him to give
(37:55):
you, and now you're.
You know it wasn't fucking coolat all.
Yeah, but he was fessing up outloud to my son.
Right after that, jacob goes inand sits down on the couch and
he very quietly said somethingto his grandpa.
You know, he said somethinglike hi, peppa, his grandpa says
hi.
And he said I didn't even hearhim.
He was talking so low to hisgrandpa and I was right in the
(38:16):
next room.
Normally you can heareverything, but he, purposely,
was talking so quietly and thenext thing I hear is his grandpa
saying no, no, don't scratchyour face, don't scratch your
face.
And he was in there threateningto scratch his face quietly to
his grandfather while I'mstanding in the kitchen, and he
made the motions.
I asked him later.
I was like what is this?
And he said well, he put hishands up on his head and acted
(38:38):
like he was scratching his faceand he said I'm sad, I'm
scratching faces, and that'sbeen his thing lately.
I'm sad, I'm scratching facesand I don't know.
I don't know why he's sofreaking sad.
But I will say that hisbehavior has been off the charts
since his birthday, which iswhen his grandmother came by and
forced her presence on him.
Ever since then, it's beenpretty bad.
(38:58):
So it was bad before, but nowit's really bad, and it's easy
for me to blame her, becauseshe's something that's not a
constant.
She was a new thing that cameinto his life and then left, and
usually three to five dayslater is when all the bullshit
starts coming out from his painthat is caused to him by these
people who do this to him.
So I don't know.
I don't know if it's him or ifit's because of her, but
(39:22):
something weird has been goingon with him lately.
Now, just yesterday, no, twodays ago I had another language
lesson with him in the kitchen.
I think it was harder than theone when I was asking him what
he had to eat that day, two daysago.
I was up there and he justbabbles stuff, you know, and so
he says superhero squad is whathe was saying.
(39:43):
That's not how he says it, butthat's what he was saying.
And I understood superhero.
And he would say superherosquad, superhero squad.
And I'm like what are yousaying?
And most of the time when I askhim that he'll start spelling
for me Usually he's pretty goodabout spelling and he might get
it jumbled up a little bit, buthe wouldn't even spell it.
He's been even not wanting tospell it, not wanting to correct
(40:06):
his speech at all.
He just says, oh sorry, andhe'll walk away.
And that really, really gets me.
I'm just trying to let him knowthat I care about what he's
saying and what's in his headand that I want to understand
him and that I would like othersto be able to understand him.
And he will not give me thetime of day with this
clarification anymore.
(40:26):
So I'm really at my wits endwith that.
But I was asking him what areyou saying, can you spell it?
And finally he starts spellingit and I just wanted to know the
last part.
But he had to spell the wholesuperheroes out.
And then he spells out squad.
So I'm working with him on thatbecause, additionally, he's
wrapping his lips around histeeth and keeping his mouth
(40:48):
closed while he does this, andso I'm working with him and I
was like, oh, that's squad.
And he says squaw.
And I said no, squad.
This went on and on and on.
I don't even know how manyminutes I stood there with him
trying to work on him sayingsquad.
But something interesting cameof it him trying to work on him
saying squad, but somethinginteresting came of it.
I got to where I was almostyelling.
I mean, I'm just so aggravatedat this point.
(41:10):
It's a fucking syllable.
Just say it, make the sound.
You know.
It's not squad, there's a D onthere.
Your name is not Jacob, it'sJacob.
There is a letter at the endand I need you to say it.
He just wasn't having it, butright when I was ready to pull
my own hair out, he says I don'tunderstand.
(41:32):
Huh, I was like, wow, awesome,thank you for telling me that.
I thought that you just werejust sucking so bad.
But anyway, I was like oh,thank you for telling me.
So I said there is a D, it'ssquad.
And I got really loud about itbecause at that point, like, how
do you, how can you notunderstand?
(41:53):
I'm showing you, I'm tellingyou, I'm forming the D with my
tongue, I'm doing all of thethings that I normally do.
What do you mean?
You don't understand.
But I was really excited thathe actually said that he doesn't
understand.
So anyway, I screamed it onemore time the D.
I spit the D out at the top ofmy lungs.
And then he said it properlySquad.
(42:15):
I was very happy with that, butit was hard.
I fought for that one reallyhard.
I had to really over enunciate,which I normally don't have to.
I mean I have to kind of, butthis was the hardest I think
I've ever worked on a word withhim ever, even worse than
(42:35):
Captain America.
It was the worst for me.
So those are the things thathave been going on, and we did
have one kind of interestingcomment that he made which I was
very excited about because itshowed a comprehension of the
surroundings and the situation.
He walked up to his dad here inthe little room down here and
his dad plays classical guitar.
So he said hey, dad, what's up?
(42:56):
And his dad didn't say anythingbecause he was playing the
guitar.
And Jacob said playing guitar,playing guitar.
That was very simple, but thatwas very cool because normally
he does not have situationalawareness, it seems, and he
doesn't give a shit what you'redoing and he'll act like he
doesn't know what it's called,and so I was really happy with
that.
I mean, these are tiny littlewins and if you're not paying
(43:19):
attention you could miss them.
When things are just unbearable,as they have been with us again
lately, it's these littlethings that I try to make note
of, and I try to appreciate inthe moment, because I'm so
consumed with how hardeverything is all the time and
it's really easy for me to justblow right by that and overlook
(43:40):
it and not even stop to smellthe flowers.
I wouldn't have even stopped torecognize that this was pretty
monumental.
It wasn't just a couple ofwords.
It was a couple of wordsshowing situational awareness
and showing that he knew theanswer.
When you know what are youdoing?
What's up?
I see what you're doing.
(44:01):
Is this what you're doing?
Doing what's up?
I see what you're doing.
Is this what you're doing?
And yes, as a matter of fact itis.
And he didn't harp on it either.
Usually he'll.
If he picks up on anything orsays anything to one of us, he
won't stop saying it Play guitar, play guitar, play guitar, play
guitar, play guitar.
Dad, dad, dad, are you playingguitar?
You know?
So it was a really interestingconversational transaction.
(44:22):
I guess I just thought it waspretty cool Every once in a
while.
That's all you got, you know.
I would love to know if youenjoyed my husband and I doing
the podcast together.
He loves what I'm doing.
He knows that I need to do it.
I feel called.
I have some solutions that I'mputting together and I just feel
called to do this podcast forpeople to share because we're so
(44:45):
marginalized and we're soscrewed.
You know he's interested incontributing more to the podcast
episodes periodically, so Iwould like to know if you guys
care one way or the other, or ifyeah, yeah, I do want to hear
from him again, or no, it's okay, or whatever.
If you have any input, I'm veryinterested in hearing it.
He thought maybe we could talkabout the strain that this
(45:08):
lifestyle has on relationshipswith couples, parents, things
like that.
I know that I touch on it a lot, I mention it a lot, but he
thought maybe we could just doan episode on it.
So if you guys have any input,please let me know.
I hope that these episodes arehelpful in some way.
I always try to reminisce onsomething from the past and tell
you something from myexperiences at this time of life
(45:29):
that we're concentrating on,and then move into something
more current.
So hopefully this format isworking well for you.
I got a significant number ofdownloads on Christmas Day, all
the way through the night, andwhile that is exciting, it's
also very saddening.
I hope you guys are doing wellout there.
It's been really hard for melately and I know it's hard for
(45:51):
everybody all the time andthere's always someone who's
having a worse time than me andall that jazz.
But I'm just saying it's beenhard and I want you guys to know
that I'm always out herethinking that.
You know, I wonder if it's hardfor them out there.
I wonder how they're doing, Iwonder how Christmas went.
I wonder if everyone is safe,and I hope everyone is, you know
, just happy and being able toenjoy their family a little bit
(46:14):
here and there and I mean byfamily I generally mean your kid
, because there is no one else,most likely, at least you know,
for most of us.
So I still have hope.
It dwindles sometimes and sinceI'm having a hard time ending on
a positive note, I think thatif you've ever seen the penguin
sing You've Got a Friend in Meon Toy Story you could imagine a
(46:35):
little kid with autism andhardly any words performing
exactly the same moves as thepenguin.
And if you haven't seen it, youshould watch it on YouTube.
Just that little scene.
Maybe that'll cheer you up.
In my next episode I'll go intodetail about these therapy
programs that I found and someof the experiences that we had
(46:58):
while we were searching andwaiting for services to come
available for him.
Thank you so much for listening.
You hang in there, you're asuperhero.
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