January 15, 2025 • 42 mins
The episode highlights the complexities of parenting a child with severe autism, touching on legislation like the Autism Cares Act, personal experiences, and behavioral challenges faced at home. We share humorous anecdotes alongside heartrending truths about navigating daily life, emphasizing the importance of understanding and compassion in our journey.
• Discussion about the Autism Cares Act and its implications
• Reflection on pulling Jacob from school and observed behaviors
• Memories from a family trip to Animal Kingdom
• Managing Jacob's challenging behaviors at home
• Conversations surrounding animalistic behaviors and coping strategies
• Using humor to navigate tough situations
• Moments showcasing Jacob's empathy and growth
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (00:18):
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
Remember, you can always accessthe transcript to this episode
and all the others at psa.
buzzsprout.
com.
You can also find the links tosupport the podcast buy me a
coffee, donate in any capacityor even buy some fanfare through
(00:40):
my little shop that I'vedesigned.
All those links are in there.
You can also find some discountcodes for some of the products
that have helped us.
It's not a long list, but I tryto include things when I find
them helpful.
The most important thing isthat you're here and listening
and you're sharing this, and Iam so grateful to all of you who
have been sharing my episodes,just sharing the podcast idea in
(01:00):
general.
I think that's a really greatway to get more attention for
our little marginalizedcommunity here.
I recently started an Instagramaccount for the podcast and
through starting that, I've beenfollowing other organizations
that have to do with severeautism.
I wanted to share this with you.
It's something that I found afew weeks ago on there.
I just keep forgetting.
(01:21):
It's called the Autism CaresAct and, to be honest, I didn't
know about it at all.
I'm not much of an activist.
I'm just doing this podcast, asyou know..
.
I mentioned it a long time ago.
.
.
just because our experience isso horrific in this world and I
want to share that with theworld and let everyone know that
this is bullshit, the way thatwe have to live, and I'm not
(01:42):
actually an activist or anythinglike that, so I'm not aware of
things like this all the time.
But this is called the AutismCares Act.
Apparently, it started about 18or 20 years ago and it seems
like it has to be renewed everyyear through Congress and the
President.
I was not aware of any of this,so I saw a post about it.
Now I will say that I have beenreally unhappy loudly unhappy
(02:06):
with the Autism Speaksorganization.
I never saw them giving anyattention to kids like ours who
are really, really suffering.
You know, they just AutismSpeaks.
All of these autismorganizations I mentioned a long
time ago in my first episodeseem like a bunch of bullshit to
me, because they all glorifythis other autism that I am not
(02:28):
familiar with.
I mean, you know what I mean.
So, anyway, I left a comment onthis Autism Cares Act post of
2024.
So I guess they just passed itand now it's going to be in
effect for 2025.
I guess that's how it works,but I said it would be really
great if this would do somethingfor profound or severe autism.
And the person replied and saidthe Autism Cares Act of 2024
(02:52):
will help address the needs ofthose with profound autism.
The bill actually includes anew enhancement that Autism
Speaks advocated for that callsfor greater inclusivity in
research activities so thatstudies reflect the full range
of needs of support and servicesto ensure the physical safety
(03:14):
and well-being of all autisticpeople.
So, yeah, that's great.
I responded to that person thatthat's a great start.
Oh, thanks for finallyincluding us in the research.
Oh, whatever, I mean, thingsmove so slowly at the legal
level.
I don't know.
It's almost.
It's just like a nod to severeautism in my opinion.
(03:34):
So I just wanted to share that.
I guess it's good news.
I've been looking back, I'vebeen finding records and looking
into things and I've realizedthat our son was actually 16
before he got into the therapiesand everything.
So I know I've said my timelineis skewed and I don't really
know which way is up.
All I know is what we've beenthrough and it seemed like a
(03:56):
whirlwind, and it still does.
So there's a lot of things thathappened before he actually got
into the therapies I mentionedin my last few episodes.
I'm just going to be trying tomix everything in at once
because I've been promising I'lltell you about this therapy
stuff, even though it's actuallychronologically not supposed to
be coming up yet.
(04:16):
But what does it matter?
I first want to get into someof the behaviors we were
experiencing.
I'd like to preface all of thiswith I don't think that it's
because we pulled him out ofschool.
I think that this stuff wasalready either happening or just
under the surface and we justwere not spending enough time
with him because of the amountof time he was spending in
(04:37):
school.
I really think that this washappening inevitably and I feel
grateful that we did pull himout of school and have him at
home with us so that we couldsee it.
Because I really don't trustthe educators, based on our
experience with them in the past.
I just don't trust them to giveus the details or, you know,
honestly, tell us, just like Idon't trust family, when
(04:59):
something happens, to tell methe truth, because we've been
there, done that and it didn'twork out.
So I just first want toillustrate the tenacity of this
child.
When he was 10, we managed toorganize a trip to Orlando.
We took the grandfather with usto allow us time to go on the
big boy rides and he could watchJacob.
(05:22):
You know, we just thought itwould be a lot easier as long as
we're all together in the park.
Who cares?
So we did not actually go toDisney World, we went to Animal
Kingdom, jacob's favorite thingof all the Universal Studios,
and attached to that is theIslands of Adventure.
This was when he was stillpretty easy to deal with.
I mean, I learned later on thathe was not easy, but he's.
(05:44):
It's all I knew.
So for me he was okay.
He didn't cry the whole timelike he did the first time we
all went to the zoo together.
So I think we did pretty good.
We got to the front of the linebecause of the autism.
We told everyone he's specialneeds and we didn't have to wait
in lines.
It was great.
He had a really good time.
Some of the rides he was reallyinterested in were shut down,
(06:04):
but he did okay.
He did obsess.
I think it was a Batman ridethat was shut down and he was
really excited to do it and hewas pretty obsessed about it for
the few days that we were there.
So we had to keep redirectinghim and at the time I didn't
even know redirecting was athing.
I didn't even know that term.
This is how green I was to allof this and we did our best to
keep him happy.
(06:24):
But one of the last things wedid was a T-Rex ride, and he
loves T-Rex, he loves all ofthis stuff we did.
Twister scared the hell out ofhim.
He did not like that very much.
We did a Shrek 3D thing and hedidn't really like that either.
He cried at everything, but heat least went to them.
He didn't like the mummy theride, but after it that's all he
(06:48):
would talk about is mummy theride.
It was scary.
So all of these things scaredthe hell out of him, but it's
what he likes.
And I don't know and I thinknow that I just said that out
loud, I wonder if that plays apart in later on his behaviors
doing the negative attentionseeking, stuffeking stuff.
I don't know, man, I reallythink I just had an epiphany
there.
Anyhow, we're all on thisdinosaur ride.
(07:10):
It's a T-Rex and you go throughthe jungle, dinosaurs are
coming down at you through thebrush and everything.
Then it's like a bigSplashwater Falls kind of thing
where you're getting ready to godown this big splashy ride and
here comes T-Rex, right aboveyour little boat.
His open mouth comes down likehe's going to just pick you
(07:30):
right up out of the boat.
And that ride, that part ofthat ride, scared the living
hell out of Jacob.
He was actually afraid that wewent down.
You know, the thing just keepsgoing, it doesn't stop and let
you get eaten.
You just go down this bigsplashy thing and he was so
disappointed in himself.
At the end we were ready toconsole him.
(07:52):
And you know crap, this isreally bad.
He's crying, he's really upset.
Okay, let's go.
You know, go go, gadget parents.
And we thought we were going tohave to just really dedicate
ourselves to fixing this.
But he turned it around and hewas like he didn't say it but he
said I want to go again.
And he actually did this ride,I think at least three times.
(08:14):
I'm pretty sure we did it threetimes.
It might have been four, but hewanted to do it again.
He could not believe that he gotscared by a ride that he knows
is fake.
I've always told him he wouldget worked up about a movie or a
game, about some bad part in it, and I would always tell him
it's not real, it's fake.
Just stop.
You know it's not, it's notreal.
(08:36):
None of this is real, it's fake.
And that's something I've hadto really emphasize all this
time because he thinks that allof that stuff is reality and he
tries to live that fake stuff onme.
You can see him like in his mindhe's watching a video game and
you can see it on his face.
His eyes are all googly and heis not paying attention to where
(08:58):
you are or where he's at.
He is somewhere else and he'slike playing some weird Mario
Brothers or something in hishead.
The reason I figured that outis because he would start
jumping with this googly faceand this lack of awareness for
his surroundings all of a suddenand then he would view me as
one of those big green stackswhere Mario has to jump up and
(09:21):
over and all that stuff, withthe bricks in between and stuff
has to jump up and over and allthat stuff and with the bricks
in between and stuff.
I swear to God, that's what hewas doing, because he tried to
jump on my head as I wasstanding on my feet in front of
him.
He was jumping closer andcloser to me and looking at the
top of my head with this weird,weird look and he would get
higher and higher and heactually tried to get on top of
(09:43):
me with his feet several times.
And it's very important to methat he understands that this
shit is not real, like when heused to try to throw people's
cats at the wall, thinking thatit was going to just stick like
a cartoon.
Even though I didn't tell him,he just seemed to remember that,
yeah, she's right, this is notreal.
It's clearly not real.
(10:03):
He was so mad at himself Icould just tell and he you know,
he's just like oh, I got to goagain.
And so we went again and heknew it was coming and he still
got scared and he still screamedand he still cried.
But he caught himself fasterand you could see it on him.
He was like damn, you know, itgot me again.
So we got off and we're likeokay, is this better?
(10:25):
He's like no, I got to go again.
I just reminding you, hedoesn't actually say these words
Okay, it's communication thatwe have as a family.
So we get back and we're like,hey, he needs to do it again and
we, you know, get back to thefront of the line and we do it
again.
It was three or four times hedid get scared.
Every single time.
They did that well on this ride.
I don't know how, but he justnever saw it coming.
(10:48):
Every single time.
They hide that T-Rex reallywell in those bushes.
But he finally was satisfiedwith his performance, I guess on
the level of fright that heshowed.
We went in the gift shop orwhatever that was.
There was a big dinosaur thereand we wanted to take his
(11:09):
picture and you could just seelike he's done.
It's all over his face.
I'm going to try to post thispicture because I'm making a lot
of posts now on Instagram,which will be on Facebook and
stuff.
So there will be some picturesof this event coming up soon.
So just watch my socials ifyou're interested in seeing
these things.
But it's all over his face.
You could just tell he is doneand that was the last thing we
(11:32):
did that day.
He could barely even getthrough his burger when we went
to eat.
That poor kid, but he tried sohard.
I just wanted to tell that storyto illustrate his tenacity,
because that same amount ofdedication was put into
torturing me later on in life.
It's the same, the same amountof dedication.
(11:52):
He took that and applied it toall of the stuff that he started
doing to me.
In our house in Wisconsin wehad two separate living rooms
with fireplaces and stuff, sothe furthest one became my
office.
That is where I would have tosit and do all my planning, all
the business meetings with myspouse and all the connecting
with businesses.
It was all telephone work andcomputer work and that kind of
(12:15):
stuff.
Just outside the doorway of myoffice were stairs that go up to
the bedrooms.
Then if you just walk past thestairs you're walking into the
rest of the house and secondliving room and garage.
So my office was as far fromthe TV in the house as you could
possibly get on the main floor.
So I thought, well, this willbe great, I'll just be secluded.
(12:36):
There was no locking door oranything, but I never had a
problem with Jacob interruptingme during work.
So I thought this will be great.
And once he got pulled out ofschool actually these behaviors
started during school and Ithink it's because of the way he
was being treated.
You know, but I could be wrong.
Maybe this was just all comingto the surface, it was all
(12:57):
inside him anyway, I don't know.
I noticed it increase, ofcourse, when he was home with me
all the time and I only hadcertain hours that I would do it
.
I didn't make him sit aroundand not have me involved with
him all day.
I did it during his nap time,during his activity time, if I
let him watch a movie, and thenI had evening hours after dinner
(13:18):
, you know.
So I had it all worked out.
Everything was fine and I wouldusually work between the hours
of nine to one and four to eight, but constantly taking breaks
and taking care of him.
It was a weird, it's hard toexplain, but it worked.
He started getting to the pointwhere he would come in my office
and just mess with me and hewould just be mean to me and
angry, and I would try to givehim everything he wanted and
(13:41):
just try to appease him.
I didn't want to spoil him, Ijust needed him to control
himself and be good.
I had to get this work done, soI had plenty of stuff to keep
him busy, plenty of meals madeup, I had plenty of snacks made
up, I had that magnetic sand, Ihad activities, you know,
coloring, movie, everything andhe would not take the time and
(14:03):
do any kind of relaxing andleave me alone.
He would just come in there andstart kind of yelling while I
was on the phone.
So I ended up having to hang upthe phone and then he would
just yell at me and I would askhim if he would do this, this,
this, this or that, and he wouldsay no to everything and I
would tell him that he had toleave.
I would just say go, do this.
And I will say that when thegrandfather was there, this
(14:27):
behavior was much worse and Ikind of feel like he is
performing for the extra peoplethat he feels don't belong there
.
I know that's a weird thing tosay, but I really I feel like
he's just showing his featherswhen the rest of the family
members are around.
Yes, he tortured me when thegrandfather wasn't there, but it
really was louder and more of ashow when there were extra
(14:50):
people in the house.
I'm just saying he would startstanding outside my office door.
I would tell him or place himsomewhere and set him up and
make sure that he could be happyand tell him I have to go and
do this work and he would gointo my office and then leave my
office and pretend to goupstairs, but he would just
stand on those stairs on theother side of the wall and he
(15:12):
would start screaming.
He's actually restarted thisbehavior lately, which sucks.
He was dead set on thesehigh-pitched screaming noises
and whining and he also has thisvoice kind of like Janis Joplin
.
I mean it's more like if you'veever seen a demon movie and
someone's possessed and theyhave like seven vocal cords
(15:32):
working at once and that's whathe sounds like and I absolutely
hate it.
I cannot stand this damn noisethat he makes and he will sit
there and do it on the otherside of the wall while I'm
trying to think and work andtalk to people and make money.
You know it was just tortureand I would have to stop working
again and leave and as soon asI would leave my office and see
(15:55):
him on the stairs, he would runup the stairs and then I would
go upstairs after him and puthim in his room.
He was already in his room andI would just kindly explain to
him hey, why don't you just stayhere?
I have a little bit of work todo.
Do you want to lay down?
Do you want to take a bath?
No, no, no, no, no.
And I asked him to please giveme just a little bit of time.
(16:17):
I just have some phone calls tomake.
These things would not go verysmoothly, these talks.
Every once in a while he wouldbe reasonable, but for the most
part he was just unbearable.
He would not agree to be good.
But I would tell him I need youto stay here, I need you to be
good, I need you to be quiet.
And I would close his bedroomdoor no-transcript, very heated,
(16:58):
I would, you know, rah, rah,rah.
And then close the door and hewould jump up from his bed as I
was walking down the hall backtowards the stairs, and he would
chase me with his hands up inthe air, flapping, but he was so
close to my back and the backof my head that I could feel my
hair moving from him and hewould flap and chong, and we
(17:20):
call it chonging, because he'llgo chong chong, chong, chong,
chong, chong, chong, you know.
And so I'm like oh, he'schonging again.
And that's when he's reallyangry.
And he's right up against myback as I'm walking, flapping
his arms all around and chonging, and when he's chonging he's
not even looking, his eyes arerolled up in his head.
(17:41):
It's possessed stuff, I'mtelling you.
And I wouldn't turn around, Iwouldn't flinch, I wouldn't look
back or nothing, I would justgo.
And he would sometimes stop atthe stairs and let me go down
the stairs and work his way backand start again.
But sometimes he would chase medown the stairs and I was so
afraid that he was going to slipand push me down the stairs.
(18:01):
I absolutely hated it, but Icouldn't get him to stop.
He used to be able to take napsand I had a nap time for him
for one to two hours and he justwould not lay down anymore.
I would put him down for a napand he would chase me back down
the hall very, very close to meagain and chonging.
(18:22):
I just could not win with thiskid.
He would just.
I don't know if he was tryingto scare me or if he was just
really mad, I don't know.
But he never did hurt me atthat point.
Later on he did, but duringthis he didn't.
But it was freaky, you know,and I started really getting
freaked out.
And then, after he started that,not much time went by and he
started to change and add morestuff to this cocktail of abuse
(18:44):
that I would have to endure andhe started howling and just
acting like an animal.
That's all I can say.
He would bare his teeth andmake them like fangs and kind of
like that scream mask, but hewould take a weird posture with
his body and I don't know.
He was like a werewolf, I thinkis what he was trying to do.
Other times he would be like adog, I don't know, but it was
(19:05):
really animalistic and he wouldhowl and stuff that, in addition
to the screams and the whinesand the demon vocal cords, and
he would do this to me almostall day.
If he was not really occupiedwith something which was, I mean
, nothing keeps his attention,he would just torture me all day
long and sometimes thegrandfather would be there and I
(19:26):
would see him standing overthere, just standing over there
watching this, and I didn't makeeye contact with him and I
didn't.
I mean, a little part of me waslike I wish he would just help
me.
But on the other hand, I waslike, what's he going to do?
I'm not.
I can't really be mad at himbecause nobody knows what to do
with this.
This is bullshit.
Why would he know what to do ifI don't know what to do?
(19:46):
I live with this kid.
You know I can't expect him,but I would really appreciate it
if he wouldn't just stand thereand ogle at it.
You know, I feel like he's justentertained and it's really
annoying.
But anyway, this was seen byanother family member, but my
spouse was never home when thishappened.
So anyway, he keeps acting likean animal towards me, just
(20:09):
towards me, not just in general,not just around the house, you
know, just towards me directly.
I'm trying to keep our houseafloat, I'm trying to keep us in
business, and it was really,really distracting.
I felt like I had to defendmyself all the time.
There was a meme right aroundthat time that came out right
around the time that this allwas going on, calm with him, and
(20:32):
I'm so trying to just deal withhim and reason with him and
treat him well, show him how Iwant him to be towards me, and
he would fight me every step ofthe way and I would, you know,
just do the best I could and goback in my office and get down
underneath my desk and justthrow middle fingers.
You know, just throw middlefingers towards him where he
(20:55):
couldn't see me.
I was so mad at this kid and Ijust had no outlet.
I had no way I couldn't tellhim.
There's no way to express theanger and rage and disgust that
I was feeling from the abusethat I was enduring every single
day of my life, while I wastaking care of someone who
(21:17):
didn't give a shit if I tookcare of them or not, and I had
to be so nice to him all thetime, and I had to be so nice to
everybody on the phone all thetime.
I had to be nice to the familythat came and ate all my food
and spent all my money all thetime.
I had to be nice and I wouldjust go under my desk and just
throw middle fingers towards myson in the other room.
(21:39):
Then a meme came out and it wassomebody being mad at their
boss and being in their officeand just throwing middle fingers
, and it made me laugh so hard.
So I totally had just done thatand here comes a meme about me.
The other thing that came to myattention right around that time
(22:00):
and it was perfect timing aswell, because I was having
trouble with him doing the napsall of a sudden which had been a
thing ever since I came around.
This kid's been taking naps andit's been a godsend for us to
get parent stuff done.
And now all of a sudden he'sjumping out of bed and chonging
at my back of my head.
Just would not take a nap.
This had been going on for awhile and then suddenly here
(22:22):
comes a video of Jennifer Garnerreading a book called Go the
Fuck to Sleep, and I just lovedthat book.
I watched that video constantlyback then.
It was so funny and it's sonice to, even though she wasn't
talking about autism, it wasjust a book about a kid who will
(22:42):
not go the fuck to sleep, andit was perfect for me.
So it's really nice to be ableto find things that shed a
humorous light on what you'regoing through, when what you're
going through is so damn dark.
So if you haven't seen that andyou're having trouble with your
kid going to sleep, you shouldtotally search for that on
YouTube.
Thankfully I don't have thatfeeling anymore, so things have
(23:05):
gotten better.
But back to the animalisticbehaviors.
I finally told him because, asyou know, I am in the practice
of telling him how I feel whenhe does XYZ and I told him that
hurts my head, I told him allthe ways that it makes me feel
and he didn't care.
He just kept doing it.
And then I told him if you aregoing to act like a dog, I'm
(23:28):
going to put you outside, like Iput the dog outside.
You want to act like an animal?
You're going to go outsidewhere the animals live, do you
understand?
And it got such a weird lookfrom him he was like it was
incomprehensible that I wouldeven say something like that.
And I think that he understoodexactly the illustration that I
(23:49):
was giving.
But he didn't realize that thatwas like a thing that I would
even think of.
It kind of shocked him, youknow, and it worked for a while.
He would do it every day andwhen he did it I would say I'm
going to put you outside.
I was just talking shit, Ididn't mean it.
Eventually it stopped workingand he didn't believe me because
I didn't do it and I put hisass outside?
(24:10):
I sure did.
I put him outside side.
I said come here, you're actinglike an animal.
What are you?
Werewolf or whatever it was,you know?
I said, all right, let's go.
He didn't believe me.
So I stepped outside and keptmy hand on the door and had him
come outside and I told himyou're going to stay out here
until you can stop acting like adog.
He started arguing, you know,with whining and noises and
(24:32):
stuff, and I just went insideand closed the door.
I stood there and he came rightin and I said are you done
acting like an animal?
He said no.
I said then get outside.
And he went.
That became a thing.
The more I had to send himoutside, the worse he would
actually act.
So I just I don't know.
I didn't know what to do.
I was home alone and I wasn'tafraid of him running away
(24:54):
because I was standing rightthere watching him and where's
he going to go?
50 acres, I can catch him, noproblem.
You know he's not going to jumpon the four wheeler, but I can
and I can go get him.
You know, I wasn't afraid atall, but I needed him to
understand that this wasunacceptable and that there were
consequences and I couldn'tthink of anything.
There was nothing to take awayfrom him.
He didn't like anything.
There was just nothing.
(25:14):
He didn't what.
What are you going to do?
So I put him outside.
Eventually he became moreabusive and he would come back
in and just want to chong in myface and it was terrible.
I can't even describe howterrible it was, and he hadn't
hurt me yet, but it waspsychologically damaging it was.
My nervous system wascompletely shot and I couldn't
(25:37):
deal with it.
You can't act like that in myhouse.
I'm sorry, you just can't.
You know there was no other wayto control him.
But eventually he startedgetting more and more out of
hand.
The go outside exchange startedto get more and more heated and
now, mind you, he's like 5'8",5'10" and I'm less than 5'4".
It wasn't working out.
One day it got so bad, and itstayed this bad for every day
(26:01):
afterwards.
But it got so bad that I threwhim out of the house.
I told him you will stayoutside until you can behave.
And his dad was actually homethat day too, and I told his dad
what I was going to do, becauseeven his dad couldn't handle it
.
There was nothing we could doto stop him from what he was
doing.
Of course I keep him updated, Itell him everything.
(26:22):
Hey, I threatened to throw thekid outside today and then, hey,
I threw the kid outside today.
You know, this was just thenatural progression of things.
And I said well, daddy, I'mgoing to put his ass outside If
he keeps acting like this.
If you do you have an answer?
Is there something that youthink we should do?
He's like I don't know.
And he just got worse and worseand worse.
And I said get outside.
And I put him the fuck outsideand I locked the door because he
(26:45):
came right after me and pushedthe door into me and I said, no,
get outside.
And I closed the door and Ilocked it and he was trying to
get in like Fred Flintstone,beating on that door, screaming,
and I said through the door no,no, you cannot come in the
house like that.
You have to calm down.
You want to yell and scream.
You're going to stay outsidewith your outside voice.
When you can use an insidevoice or a hunting voice, you
(27:08):
can come back in the house.
And he just wouldn't.
So he goes over to the nearestwindow, puts his face up to it
and starts screaming.
And then he goes to the nextwindow and just screams.
And he just did that all around.
He did all the main floorwindows first and then he went
and chased all the second floorwindows and he went to every
(27:28):
single one and we were watchinghim through each window just to
keep an eye on him and make surehe didn't get hurt or do
something stupid.
So we're watching him, but hecouldn't see us that we knew of.
He could see us in some of therooms and that's why he would
put his face on there and scream.
But well then we wanted to goupstairs and get a bird's eye
view and make sure that we knewwhat was around, and you know we
could just keep an eye oneverything and him so
(27:51):
surroundings are safe.
He actually, he didn't see usdownstairs anymore.
Maybe he figured that we wentup, but he went to all the
upstairs windows and startedlooking in and just screaming
and I knew he couldn't see us.
And then at one point I thoughthe did see me and I was like,
oh no, he saw me.
So now it's become a game to usand he's just out there working
(28:12):
it out, but that actuallybecame a thing, believe it or
not.
I had to throw him outsidebecause he was acting like an
animal and that was the only waythat I knew that to teach him.
I don't have any help, you know, and he has no, nothing, no
input from anyone.
He's on this waiting list.
Still it hasn't been funded,he's not getting anything and I
(28:33):
don't think that school is goingto help, you know.
So I know it sounds terrible,but that's what I did.
I had to because I, you know, Iwas honestly afraid that he was
going to hurt me or himself inthe house.
It's a lot safer outside.
There was just grass.
There was nowhere he could go.
There was another time, a verymemorable time of me having to
put him outside, actually acouple different times.
(28:55):
Another time that I did it, itwas a beautiful day, beautiful
day outside, and I put himoutside.
I had to get some stuff doneand I actually had clients
calling me and I couldn't dealwith them.
You know he wouldn't let mework.
So I put him outside and Icould watch him, because he's
just going to go right in frontof my window, right in front of
my office.
It was almost like he was inthe same room but at least there
(29:16):
was a window and a wall thereand it significantly reduced the
noise and the stress just byputting him on a different side
of the house and I could stillsee him.
But he went right over in thisbeautiful part of the yard.
It was real, real nice and likemossy, and it was just
beautiful.
He just went right over there,turned around, looking straight
(29:37):
in my office window windowthey're big, big windows and he
just dropped to his knees andscreamed at the top of his lungs
.
I know the neighbors I mean theneighbors were far away.
We had no neighbors that wecould see, but you could hear
them because there was wateraround and the noise travels
easy and I know they all are.
I mean, and this happened allthe time, whether he was locked
(29:58):
out or whether he was with usand just trying to fight me
outside, he was constantlyscreaming and I felt really bad
and I felt like, geez man, isanyone going to like come over
here and see that, whethersomething's wrong?
I mean, these screams are bad,you know, and he's looking me
straight in the face and justscreaming on his knees in my
(30:19):
yard on a beautiful day, it wasbeautiful outside.
It was so sad and I justremember him doing that and he
just he screamed right there fora really long time, a long time
I don't even know how long itwas, but he just sat there and
screamed constantly and I thinkthat was how he was trying to
get back at me for putting himoutside.
(30:40):
So these are the types ofthings that we had mostly I had
to deal with while waiting forservices to become available for
him.
This went on for what?
Like a year and a half.
This went on the whole timethat he was home out of school
and it continued after that.
But I mean, I dealt with thiswithout help for a year and a
half before he finally gotservices.
(31:02):
So for that whole year and ahalf I talked to that lady at
the state level that I told youabout and I, you know I would
call her, she would call me andI was just trying to make waves
and make an impression and showher how miserable I am.
And she could hear him while Iwas talking.
I didn't talk in front of himand let him hear me say anything
about him, but she could hearhim, she knew.
(31:25):
She knew I needed help andthere was just nothing that we
could do.
Another thing that I rememberabout having to put him outside
was during the winter.
I had to put him outside again,and this takes some doing.
It was really strange.
I think maybe he was just usedto it by this point, but I had
to get him dressed.
I couldn't, I can't, stick himoutside, you know.
So this means snow pants andsnow boots.
(31:47):
I mean, this is deliberate,right, and so I somehow figured
out a way, and I think his dadwas with me the first time.
We did this one too.
Maybe that's how we figured itout together, but we figured out
a way to endure the torture.
Now see, in my eyes, these werenot meltdowns.
I wasn't familiar with what ameltdown really was.
I never had actually beentrained on any of that but I
(32:10):
really don't believe it was ameltdown.
This was deliberate.
He is very deliberate, and I donow know the difference between
a meltdown and an asshole, andI think he was just being an
asshole and I think he deservedto be put outside.
There was no other way for usto survive it.
Just saying, I was not beinginsensitive.
There is a difference and thiswas not something that he was
(32:32):
not in control of.
I guess I'll say it that way hemakes his choices, he is very
deliberate, and we had to make achoice too.
So I said we need to put himoutside.
And his dad was like oh my gosh, we need to get him dressed and
we need to put him outside.
So we figured out somehow toget through the can't believe
(32:55):
that he let us get him dressed.
But I think that he knew thatI'm doing things right now that
are going to get me put out likea dog, and I know it and I'm
just going to.
Maybe that's what he wanted.
Maybe he wanted to be put outlike the dog, you know,
completely dressed.
I mean pants tucked into hissocks, full snowsuit put on
(33:18):
boots, hat, gloves, everythingScarf.
I mean the whole nine.
This was the first time we hadto do it.
We bundled him up and threw himoutside and we said, yeah, go
out there and work it out, youknow, because he loves snow, he
loves cold, he just loves thatstuff.
So you know, look, it's notthat bad to get thrown outside.
Obviously, you're bored insideand you're torturing us.
You know.
He just went out there and satin the snow and he laid on this
(33:40):
big snow mound from the snowplowand you know we were like, okay
, cool, and he would just laythere in the snow.
It was really kind of cute.
He doesn't know how to makesnow angels.
We've tried to teach him, buthe would kind of wiggle around
in the snow and he was having agood time and he totally forgot
that he was trying to make usmiserable.
So that did work.
However, after that first timewe might have had to do it one
(34:02):
or two more times and he wasagreeable.
But then this one time sticksout in my mind.
He went out to that snow moundagain and I thought I'll just
watch him.
He's, you know, he's so cutewhen he's on the snow mound.
I just love watching him in thesnow because he just loves it.
And we had such great insulatedclothing because of where we
lived that we weren't worriedabout him getting wet or cold,
(34:24):
so it was really therapeutic forhim.
We thought and I thought, ok,there he goes to his little snow
mound.
He's going to forget all aboutbeing an animal here.
And he went there and laidthere for a minute and then he
sat straight up, got on hisknees and roared just just this
terrible, terrible roar, and hethrew his gloves off.
(34:47):
He took something else off too,maybe his beanie cap or
something that was under hishood and he started banging his
head on the top of this snowhill that was made by a snowplow
and those are not soft and Iwas horrified.
At first I was like, wait, didhe just do?
And then he did it again, holyshit.
(35:07):
So I had to run outside and getdown here right now, and he
wouldn't stop.
And he's just beating his headon this frozen hill of snow.
I had never, ever seen him dothat before, ever on anything,
in any situation, ever.
Then this became normal.
I couldn't put him outsideanymore because this became his
(35:28):
thing.
So now he could only go outsideif he agreed.
I couldn't do it anymorebecause I couldn't watch him
damage his brain like that.
And I went out there andchecked that snow hill and it
wasn't as hard as I thoughtbecause he wasn't on the icy
side of it.
So it was still not ideal, butit wasn't as hard as I had
(35:48):
expected it to be.
So I was relieved about that.
I kind of fell into it a littlebit, so it wasn't bad.
But he kept seeking out surfacesthat were harder and harder and
he did end up hitting his headon some ice glazed snow.
Then he ended up doing it onsnow that was barely packed and
the only thing underneath it wasa sidewalk.
(36:10):
Again, I was horrified.
You know, I had never seen thatbefore.
I have never seen any child dothat before ever.
I mean, I've seen the kids inhis classes.
They wear helmets and stuff andI get it, but I've never seen
it, like I've never seen himbite himself until the other day
, recently.
You know, I've never seenanybody do that with their head,
unless it was in a movie.
(36:30):
I mean, it was just horrific.
When Spring or Summer camearound, he did it again on the
concrete, and I was already doneputting him outside.
You know, I'm not going to dothat anymore.
I guess I'll have to take himacting like an animal in the
house because I'm not going tohave him going out there and
getting brain damage.
So you know, that was over andhe was just outside to be
outside, you know, and he did itagain and this was during a
(36:54):
phase where he did nothing butscream.
He screamed constantly.
We would say.
At this point we were like doyou want to go outside?
Do you need to go outside, youknow?
And if he made the decision togo outside, he just kept banging
his head and he starts banginghis head on the concrete all the
time.
And I just started taking himto the ER.
(37:15):
I didn't know what to do, likethere's something wrong with him
and I need to make sure he'snot bleeding in his brain.
What the fuck is going on withthis kid?
This is when I found out that ifI crack my truck window, you
know, just about a half inch toan inch it would stop him from
screaming.
It would stop him fromeverything If he wasn't
screaming.
(37:35):
He was just obsessivelyrepeating my name all day long
Shendell, shendell, shendell,shendell, shendell, rosie, rosie
, shendell, shendell, shendell,shendell, shendell.
I mean nonstop.
There was no break.
He would latch onto some soundand he would just hammer me with
it.
So every time I'm driving himto the ER, and that's all I
would get.
(37:55):
We're at home, and that's all Iwould get.
We were in the waiting room andthat's all I would get.
He just never stopped.
He didn't even take a breath.
He just kept hammering me withthis stuff and I'm bringing him
to get evaluated like threetimes a week at this point
because he keeps hitting hishead and if he didn't hit his
head, his behavior was so weirdI thought maybe something was
(38:18):
wrong with him.
It was really, really bad.
There's a lot more to this story.
I have to stop now because Iagain run out of time.
I have to go do this mom thing.
He was having a thing and Igave him extra cannabis medicine
and I told him because today'spizza day and it's very out of
(38:41):
character for him to act crazyon pizza day I told him I will
take your pizza away.
You need to control yourselfand make good choices.
So those two terms still workvery well.
As soon as I say controlyourself, it's almost as if he
had been hypnotized in the pastto when he hears that term, he
closes his eyes, resets andtakes a deep breath, because
(39:01):
that every single time I saythat that's what he does.
So those things still work andI did get him really high with
his cannabis today because I'mjust not in the mood.
But I wanted to tell you thepast two days I have been having
a hard time.
You know I just I'm very busy.
I have a lot of irons in thefire and it's all around this
(39:22):
lifestyle change, around thispodcast and the change that I'm
trying to create in the worldfor people like us.
So I do.
I have a lot of irons in thefire and I feel very alone.
I would try to call some kindof you know, therapy or
something, but the state hastaken away my insurance and
they're making it hard for me toget it back and they're all
(39:43):
telling me the wrong stuff.
So I'm having that much of ahard time right now.
I'm going to be fine.
I'm just having a hard timeright now because I do feel very
alone, because all of thethings that I'm trying to do,
only I know how to do them and Ihave no help.
So everything is on myshoulders and the things around
here are not the way that I needthem to be yet and we're still
(40:06):
having trouble with thistransition of me taking over.
Everything is just chaos.
So I've been having a very hardtime the past few days.
Today would be day three.
So the two days before today,thursday and Friday, I've been
kind of down in the dumps andJacob's been picking up on it.
Even though I'm not crying, I'mnot pouting, I'm always putting
(40:27):
on a happy face around him.
I'm never directing my sadnessor anger or rage or
disappointment towards him.
I'm processing those feelingson my own and I treat him
exactly with the respect that hedeserves as a human being.
And I'm processing thosefeelings on my own and I treat
him exactly with the respectthat he deserves as a human
being and I'm very nice to him.
There's no reason for him toalways ask me these things, but
he has been really making alittle bit of a breakthrough in
(40:50):
speech by kind of babysitting meand he's just been asking me
are you okay?
And a lot of times that's justbecause, like, if you burp in
front of Tweedledum, he'll belike, yeah, okay.
And you know so Jacob picks upon things that people say all
the time and then he'll use them, even out of context, he'll
just say them.
So a lot of times that's whatit is.
But this is actually directedtowards my energy and he's just
(41:13):
asking me are you okay?
And I was honest with him.
You know I don't lie to him.
Sometimes I do, but most of thetime I'll be honest and I said
the other day I'm just a littlesad, but I'm all right, you know
.
And then yesterday he sat downwith me on the couch.
He wanted to watch Blippi,blippi.
You guys, if you haven'tchecked the show out, you got to
.
He loves the show.
It's a really nice pacifierright now.
(41:35):
But he sat down to watch Blippiand instead of watching Blippi
he watched me.
And he kept asking me are youokay, are you sad?
And after a while we were justsitting there watching TV.
I was smiling and watching theshow, I wasn't actually feeling
sad at the moment, but he saidoh, come here, rose, and he put
his arm around me and gave me ahug.
(41:56):
He said I know you're sad, it'sbe okay.
I just, you know, every once ina while you're just proud.
I'm just proud of him right nowfor being, you know, so
compassionate and empathetic andusing words and emotions in the
right circumstance, and I justthought that was really awesome.
So I think that's where I'llleave it today and I've got to
(42:19):
go now, but I promise my nextepisode is going to start out
with the experiences that webegan to have around therapy and
options that were available tohim.
So I think that you knowJacob's message is for everybody
out there in our position.
If you're in this boat with us,jacob wants you to know.
He knows you're sad and he saysjust be okay, you hang in there
(42:41):
, you're a superhero.
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
Remember, you can always accessthe transcript to this episode
and all the others at psa.
buzzsprout.
com.
You can also find the links tosupport the podcast buy me a
coffee, donate in any capacityor even buy some fanfare through
(00:40):
my little shop that I'vedesigned.
All those links are in there.
You can also find some discountcodes for some of the products
that have helped us.
It's not a long list, but I tryto include things when I find
them helpful.
The most important thing isthat you're here and listening
and you're sharing this, and Iam so grateful to all of you who
have been sharing my episodes,just sharing the podcast idea in
(01:00):
general.
I think that's a really greatway to get more attention for
our little marginalizedcommunity here.
I recently started an Instagramaccount for the podcast and
through starting that, I've beenfollowing other organizations
that have to do with severeautism.
I wanted to share this with you.
It's something that I found afew weeks ago on there.
I just keep forgetting.
(01:21):
It's called the Autism CaresAct and, to be honest, I didn't
know about it at all.
I'm not much of an activist.
I'm just doing this podcast, asyou know..
.
I mentioned it a long time ago.
.
.
just because our experience isso horrific in this world and I
want to share that with theworld and let everyone know that
this is bullshit, the way thatwe have to live, and I'm not
(01:42):
actually an activist or anythinglike that, so I'm not aware of
things like this all the time.
But this is called the AutismCares Act.
Apparently, it started about 18or 20 years ago and it seems
like it has to be renewed everyyear through Congress and the
President.
I was not aware of any of this,so I saw a post about it.
Now I will say that I have beenreally unhappy loudly unhappy
(02:06):
with the Autism Speaksorganization.
I never saw them giving anyattention to kids like ours who
are really, really suffering.
You know, they just AutismSpeaks.
All of these autismorganizations I mentioned a long
time ago in my first episodeseem like a bunch of bullshit to
me, because they all glorifythis other autism that I am not
(02:28):
familiar with.
I mean, you know what I mean.
So, anyway, I left a comment onthis Autism Cares Act post of
2024.
So I guess they just passed itand now it's going to be in
effect for 2025.
I guess that's how it works,but I said it would be really
great if this would do somethingfor profound or severe autism.
And the person replied and saidthe Autism Cares Act of 2024
(02:52):
will help address the needs ofthose with profound autism.
The bill actually includes anew enhancement that Autism
Speaks advocated for that callsfor greater inclusivity in
research activities so thatstudies reflect the full range
of needs of support and servicesto ensure the physical safety
(03:14):
and well-being of all autisticpeople.
So, yeah, that's great.
I responded to that person thatthat's a great start.
Oh, thanks for finallyincluding us in the research.
Oh, whatever, I mean, thingsmove so slowly at the legal
level.
I don't know.
It's almost.
It's just like a nod to severeautism in my opinion.
(03:34):
So I just wanted to share that.
I guess it's good news.
I've been looking back, I'vebeen finding records and looking
into things and I've realizedthat our son was actually 16
before he got into the therapiesand everything.
So I know I've said my timelineis skewed and I don't really
know which way is up.
All I know is what we've beenthrough and it seemed like a
(03:56):
whirlwind, and it still does.
So there's a lot of things thathappened before he actually got
into the therapies I mentionedin my last few episodes.
I'm just going to be trying tomix everything in at once
because I've been promising I'lltell you about this therapy
stuff, even though it's actuallychronologically not supposed to
be coming up yet.
(04:16):
But what does it matter?
I first want to get into someof the behaviors we were
experiencing.
I'd like to preface all of thiswith I don't think that it's
because we pulled him out ofschool.
I think that this stuff wasalready either happening or just
under the surface and we justwere not spending enough time
with him because of the amountof time he was spending in
(04:37):
school.
I really think that this washappening inevitably and I feel
grateful that we did pull himout of school and have him at
home with us so that we couldsee it.
Because I really don't trustthe educators, based on our
experience with them in the past.
I just don't trust them to giveus the details or, you know,
honestly, tell us, just like Idon't trust family, when
(04:59):
something happens, to tell methe truth, because we've been
there, done that and it didn'twork out.
So I just first want toillustrate the tenacity of this
child.
When he was 10, we managed toorganize a trip to Orlando.
We took the grandfather with usto allow us time to go on the
big boy rides and he could watchJacob.
(05:22):
You know, we just thought itwould be a lot easier as long as
we're all together in the park.
Who cares?
So we did not actually go toDisney World, we went to Animal
Kingdom, jacob's favorite thingof all the Universal Studios,
and attached to that is theIslands of Adventure.
This was when he was stillpretty easy to deal with.
I mean, I learned later on thathe was not easy, but he's.
(05:44):
It's all I knew.
So for me he was okay.
He didn't cry the whole timelike he did the first time we
all went to the zoo together.
So I think we did pretty good.
We got to the front of the linebecause of the autism.
We told everyone he's specialneeds and we didn't have to wait
in lines.
It was great.
He had a really good time.
Some of the rides he was reallyinterested in were shut down,
(06:04):
but he did okay.
He did obsess.
I think it was a Batman ridethat was shut down and he was
really excited to do it and hewas pretty obsessed about it for
the few days that we were there.
So we had to keep redirectinghim and at the time I didn't
even know redirecting was athing.
I didn't even know that term.
This is how green I was to allof this and we did our best to
keep him happy.
(06:24):
But one of the last things wedid was a T-Rex ride, and he
loves T-Rex, he loves all ofthis stuff we did.
Twister scared the hell out ofhim.
He did not like that very much.
We did a Shrek 3D thing and hedidn't really like that either.
He cried at everything, but heat least went to them.
He didn't like the mummy theride, but after it that's all he
(06:48):
would talk about is mummy theride.
It was scary.
So all of these things scaredthe hell out of him, but it's
what he likes.
And I don't know and I thinknow that I just said that out
loud, I wonder if that plays apart in later on his behaviors
doing the negative attentionseeking, stuffeking stuff.
I don't know, man, I reallythink I just had an epiphany
there.
Anyhow, we're all on thisdinosaur ride.
(07:10):
It's a T-Rex and you go throughthe jungle, dinosaurs are
coming down at you through thebrush and everything.
Then it's like a bigSplashwater Falls kind of thing
where you're getting ready to godown this big splashy ride and
here comes T-Rex, right aboveyour little boat.
His open mouth comes down likehe's going to just pick you
(07:30):
right up out of the boat.
And that ride, that part ofthat ride, scared the living
hell out of Jacob.
He was actually afraid that wewent down.
You know, the thing just keepsgoing, it doesn't stop and let
you get eaten.
You just go down this bigsplashy thing and he was so
disappointed in himself.
At the end we were ready toconsole him.
(07:52):
And you know crap, this isreally bad.
He's crying, he's really upset.
Okay, let's go.
You know, go go, gadget parents.
And we thought we were going tohave to just really dedicate
ourselves to fixing this.
But he turned it around and hewas like he didn't say it but he
said I want to go again.
And he actually did this ride,I think at least three times.
(08:14):
I'm pretty sure we did it threetimes.
It might have been four, but hewanted to do it again.
He could not believe that he gotscared by a ride that he knows
is fake.
I've always told him he wouldget worked up about a movie or a
game, about some bad part in it, and I would always tell him
it's not real, it's fake.
Just stop.
You know it's not, it's notreal.
(08:36):
None of this is real, it's fake.
And that's something I've hadto really emphasize all this
time because he thinks that allof that stuff is reality and he
tries to live that fake stuff onme.
You can see him like in his mindhe's watching a video game and
you can see it on his face.
His eyes are all googly and heis not paying attention to where
(08:58):
you are or where he's at.
He is somewhere else and he'slike playing some weird Mario
Brothers or something in hishead.
The reason I figured that outis because he would start
jumping with this googly faceand this lack of awareness for
his surroundings all of a suddenand then he would view me as
one of those big green stackswhere Mario has to jump up and
(09:21):
over and all that stuff, withthe bricks in between and stuff
has to jump up and over and allthat stuff and with the bricks
in between and stuff.
I swear to God, that's what hewas doing, because he tried to
jump on my head as I wasstanding on my feet in front of
him.
He was jumping closer andcloser to me and looking at the
top of my head with this weird,weird look and he would get
higher and higher and heactually tried to get on top of
(09:43):
me with his feet several times.
And it's very important to methat he understands that this
shit is not real, like when heused to try to throw people's
cats at the wall, thinking thatit was going to just stick like
a cartoon.
Even though I didn't tell him,he just seemed to remember that,
yeah, she's right, this is notreal.
It's clearly not real.
(10:03):
He was so mad at himself Icould just tell and he you know,
he's just like oh, I got to goagain.
And so we went again and heknew it was coming and he still
got scared and he still screamedand he still cried.
But he caught himself fasterand you could see it on him.
He was like damn, you know, itgot me again.
So we got off and we're likeokay, is this better?
(10:25):
He's like no, I got to go again.
I just reminding you, hedoesn't actually say these words
Okay, it's communication thatwe have as a family.
So we get back and we're like,hey, he needs to do it again and
we, you know, get back to thefront of the line and we do it
again.
It was three or four times hedid get scared.
Every single time.
They did that well on this ride.
I don't know how, but he justnever saw it coming.
(10:48):
Every single time.
They hide that T-Rex reallywell in those bushes.
But he finally was satisfiedwith his performance, I guess on
the level of fright that heshowed.
We went in the gift shop orwhatever that was.
There was a big dinosaur thereand we wanted to take his
(11:09):
picture and you could just seelike he's done.
It's all over his face.
I'm going to try to post thispicture because I'm making a lot
of posts now on Instagram,which will be on Facebook and
stuff.
So there will be some picturesof this event coming up soon.
So just watch my socials ifyou're interested in seeing
these things.
But it's all over his face.
You could just tell he is doneand that was the last thing we
(11:32):
did that day.
He could barely even getthrough his burger when we went
to eat.
That poor kid, but he tried sohard.
I just wanted to tell that storyto illustrate his tenacity,
because that same amount ofdedication was put into
torturing me later on in life.
It's the same, the same amountof dedication.
(11:52):
He took that and applied it toall of the stuff that he started
doing to me.
In our house in Wisconsin wehad two separate living rooms
with fireplaces and stuff, sothe furthest one became my
office.
That is where I would have tosit and do all my planning, all
the business meetings with myspouse and all the connecting
with businesses.
It was all telephone work andcomputer work and that kind of
(12:15):
stuff.
Just outside the doorway of myoffice were stairs that go up to
the bedrooms.
Then if you just walk past thestairs you're walking into the
rest of the house and secondliving room and garage.
So my office was as far fromthe TV in the house as you could
possibly get on the main floor.
So I thought, well, this willbe great, I'll just be secluded.
(12:36):
There was no locking door oranything, but I never had a
problem with Jacob interruptingme during work.
So I thought this will be great.
And once he got pulled out ofschool actually these behaviors
started during school and Ithink it's because of the way he
was being treated.
You know, but I could be wrong.
Maybe this was just all comingto the surface, it was all
(12:57):
inside him anyway, I don't know.
I noticed it increase, ofcourse, when he was home with me
all the time and I only hadcertain hours that I would do it
.
I didn't make him sit aroundand not have me involved with
him all day.
I did it during his nap time,during his activity time, if I
let him watch a movie, and thenI had evening hours after dinner
(13:18):
, you know.
So I had it all worked out.
Everything was fine and I wouldusually work between the hours
of nine to one and four to eight, but constantly taking breaks
and taking care of him.
It was a weird, it's hard toexplain, but it worked.
He started getting to the pointwhere he would come in my office
and just mess with me and hewould just be mean to me and
angry, and I would try to givehim everything he wanted and
(13:41):
just try to appease him.
I didn't want to spoil him, Ijust needed him to control
himself and be good.
I had to get this work done, soI had plenty of stuff to keep
him busy, plenty of meals madeup, I had plenty of snacks made
up, I had that magnetic sand, Ihad activities, you know,
coloring, movie, everything andhe would not take the time and
(14:03):
do any kind of relaxing andleave me alone.
He would just come in there andstart kind of yelling while I
was on the phone.
So I ended up having to hang upthe phone and then he would
just yell at me and I would askhim if he would do this, this,
this, this or that, and he wouldsay no to everything and I
would tell him that he had toleave.
I would just say go, do this.
And I will say that when thegrandfather was there, this
(14:27):
behavior was much worse and Ikind of feel like he is
performing for the extra peoplethat he feels don't belong there
.
I know that's a weird thing tosay, but I really I feel like
he's just showing his featherswhen the rest of the family
members are around.
Yes, he tortured me when thegrandfather wasn't there, but it
really was louder and more of ashow when there were extra
(14:50):
people in the house.
I'm just saying he would startstanding outside my office door.
I would tell him or place himsomewhere and set him up and
make sure that he could be happyand tell him I have to go and
do this work and he would gointo my office and then leave my
office and pretend to goupstairs, but he would just
stand on those stairs on theother side of the wall and he
(15:12):
would start screaming.
He's actually restarted thisbehavior lately, which sucks.
He was dead set on thesehigh-pitched screaming noises
and whining and he also has thisvoice kind of like Janis Joplin
.
I mean it's more like if you'veever seen a demon movie and
someone's possessed and theyhave like seven vocal cords
(15:32):
working at once and that's whathe sounds like and I absolutely
hate it.
I cannot stand this damn noisethat he makes and he will sit
there and do it on the otherside of the wall while I'm
trying to think and work andtalk to people and make money.
You know it was just tortureand I would have to stop working
again and leave and as soon asI would leave my office and see
(15:55):
him on the stairs, he would runup the stairs and then I would
go upstairs after him and puthim in his room.
He was already in his room andI would just kindly explain to
him hey, why don't you just stayhere?
I have a little bit of work todo.
Do you want to lay down?
Do you want to take a bath?
No, no, no, no, no.
And I asked him to please giveme just a little bit of time.
(16:17):
I just have some phone calls tomake.
These things would not go verysmoothly, these talks.
Every once in a while he wouldbe reasonable, but for the most
part he was just unbearable.
He would not agree to be good.
But I would tell him I need youto stay here, I need you to be
good, I need you to be quiet.
And I would close his bedroomdoor no-transcript, very heated,
(16:58):
I would, you know, rah, rah,rah.
And then close the door and hewould jump up from his bed as I
was walking down the hall backtowards the stairs, and he would
chase me with his hands up inthe air, flapping, but he was so
close to my back and the backof my head that I could feel my
hair moving from him and hewould flap and chong, and we
(17:20):
call it chonging, because he'llgo chong chong, chong, chong,
chong, chong, chong, you know.
And so I'm like oh, he'schonging again.
And that's when he's reallyangry.
And he's right up against myback as I'm walking, flapping
his arms all around and chonging, and when he's chonging he's
not even looking, his eyes arerolled up in his head.
(17:41):
It's possessed stuff, I'mtelling you.
And I wouldn't turn around, Iwouldn't flinch, I wouldn't look
back or nothing, I would justgo.
And he would sometimes stop atthe stairs and let me go down
the stairs and work his way backand start again.
But sometimes he would chase medown the stairs and I was so
afraid that he was going to slipand push me down the stairs.
(18:01):
I absolutely hated it, but Icouldn't get him to stop.
He used to be able to take napsand I had a nap time for him
for one to two hours and he justwould not lay down anymore.
I would put him down for a napand he would chase me back down
the hall very, very close to meagain and chonging.
(18:22):
I just could not win with thiskid.
He would just.
I don't know if he was tryingto scare me or if he was just
really mad, I don't know.
But he never did hurt me atthat point.
Later on he did, but duringthis he didn't.
But it was freaky, you know,and I started really getting
freaked out.
And then, after he started that,not much time went by and he
started to change and add morestuff to this cocktail of abuse
(18:44):
that I would have to endure andhe started howling and just
acting like an animal.
That's all I can say.
He would bare his teeth andmake them like fangs and kind of
like that scream mask, but hewould take a weird posture with
his body and I don't know.
He was like a werewolf, I thinkis what he was trying to do.
Other times he would be like adog, I don't know, but it was
(19:05):
really animalistic and he wouldhowl and stuff that, in addition
to the screams and the whinesand the demon vocal cords, and
he would do this to me almostall day.
If he was not really occupiedwith something which was, I mean
, nothing keeps his attention,he would just torture me all day
long and sometimes thegrandfather would be there and I
(19:26):
would see him standing overthere, just standing over there
watching this, and I didn't makeeye contact with him and I
didn't.
I mean, a little part of me waslike I wish he would just help
me.
But on the other hand, I waslike, what's he going to do?
I'm not.
I can't really be mad at himbecause nobody knows what to do
with this.
This is bullshit.
Why would he know what to do ifI don't know what to do?
(19:46):
I live with this kid.
You know I can't expect him,but I would really appreciate it
if he wouldn't just stand thereand ogle at it.
You know, I feel like he's justentertained and it's really
annoying.
But anyway, this was seen byanother family member, but my
spouse was never home when thishappened.
So anyway, he keeps acting likean animal towards me, just
(20:09):
towards me, not just in general,not just around the house, you
know, just towards me directly.
I'm trying to keep our houseafloat, I'm trying to keep us in
business, and it was really,really distracting.
I felt like I had to defendmyself all the time.
There was a meme right aroundthat time that came out right
around the time that this allwas going on, calm with him, and
(20:32):
I'm so trying to just deal withhim and reason with him and
treat him well, show him how Iwant him to be towards me, and
he would fight me every step ofthe way and I would, you know,
just do the best I could and goback in my office and get down
underneath my desk and justthrow middle fingers.
You know, just throw middlefingers towards him where he
(20:55):
couldn't see me.
I was so mad at this kid and Ijust had no outlet.
I had no way I couldn't tellhim.
There's no way to express theanger and rage and disgust that
I was feeling from the abusethat I was enduring every single
day of my life, while I wastaking care of someone who
(21:17):
didn't give a shit if I tookcare of them or not, and I had
to be so nice to him all thetime, and I had to be so nice to
everybody on the phone all thetime.
I had to be nice to the familythat came and ate all my food
and spent all my money all thetime.
I had to be nice and I wouldjust go under my desk and just
throw middle fingers towards myson in the other room.
(21:39):
Then a meme came out and it wassomebody being mad at their
boss and being in their officeand just throwing middle fingers
, and it made me laugh so hard.
So I totally had just done thatand here comes a meme about me.
The other thing that came to myattention right around that time
(22:00):
and it was perfect timing aswell, because I was having
trouble with him doing the napsall of a sudden which had been a
thing ever since I came around.
This kid's been taking naps andit's been a godsend for us to
get parent stuff done.
And now all of a sudden he'sjumping out of bed and chonging
at my back of my head.
Just would not take a nap.
This had been going on for awhile and then suddenly here
(22:22):
comes a video of Jennifer Garnerreading a book called Go the
Fuck to Sleep, and I just lovedthat book.
I watched that video constantlyback then.
It was so funny and it's sonice to, even though she wasn't
talking about autism, it wasjust a book about a kid who will
(22:42):
not go the fuck to sleep, andit was perfect for me.
So it's really nice to be ableto find things that shed a
humorous light on what you'regoing through, when what you're
going through is so damn dark.
So if you haven't seen that andyou're having trouble with your
kid going to sleep, you shouldtotally search for that on
YouTube.
Thankfully I don't have thatfeeling anymore, so things have
(23:05):
gotten better.
But back to the animalisticbehaviors.
I finally told him because, asyou know, I am in the practice
of telling him how I feel whenhe does XYZ and I told him that
hurts my head, I told him allthe ways that it makes me feel
and he didn't care.
He just kept doing it.
And then I told him if you aregoing to act like a dog, I'm
(23:28):
going to put you outside, like Iput the dog outside.
You want to act like an animal?
You're going to go outsidewhere the animals live, do you
understand?
And it got such a weird lookfrom him he was like it was
incomprehensible that I wouldeven say something like that.
And I think that he understoodexactly the illustration that I
(23:49):
was giving.
But he didn't realize that thatwas like a thing that I would
even think of.
It kind of shocked him, youknow, and it worked for a while.
He would do it every day andwhen he did it I would say I'm
going to put you outside.
I was just talking shit, Ididn't mean it.
Eventually it stopped workingand he didn't believe me because
I didn't do it and I put hisass outside?
(24:10):
I sure did.
I put him outside side.
I said come here, you're actinglike an animal.
What are you?
Werewolf or whatever it was,you know?
I said, all right, let's go.
He didn't believe me.
So I stepped outside and keptmy hand on the door and had him
come outside and I told himyou're going to stay out here
until you can stop acting like adog.
He started arguing, you know,with whining and noises and
(24:32):
stuff, and I just went insideand closed the door.
I stood there and he came rightin and I said are you done
acting like an animal?
He said no.
I said then get outside.
And he went.
That became a thing.
The more I had to send himoutside, the worse he would
actually act.
So I just I don't know.
I didn't know what to do.
I was home alone and I wasn'tafraid of him running away
(24:54):
because I was standing rightthere watching him and where's
he going to go?
50 acres, I can catch him, noproblem.
You know he's not going to jumpon the four wheeler, but I can
and I can go get him.
You know, I wasn't afraid atall, but I needed him to
understand that this wasunacceptable and that there were
consequences and I couldn'tthink of anything.
There was nothing to take awayfrom him.
He didn't like anything.
There was just nothing.
(25:14):
He didn't what.
What are you going to do?
So I put him outside.
Eventually he became moreabusive and he would come back
in and just want to chong in myface and it was terrible.
I can't even describe howterrible it was, and he hadn't
hurt me yet, but it waspsychologically damaging it was.
My nervous system wascompletely shot and I couldn't
(25:37):
deal with it.
You can't act like that in myhouse.
I'm sorry, you just can't.
You know there was no other wayto control him.
But eventually he startedgetting more and more out of
hand.
The go outside exchange startedto get more and more heated and
now, mind you, he's like 5'8",5'10" and I'm less than 5'4".
It wasn't working out.
One day it got so bad, and itstayed this bad for every day
(26:01):
afterwards.
But it got so bad that I threwhim out of the house.
I told him you will stayoutside until you can behave.
And his dad was actually homethat day too, and I told his dad
what I was going to do, becauseeven his dad couldn't handle it
.
There was nothing we could doto stop him from what he was
doing.
Of course I keep him updated, Itell him everything.
(26:22):
Hey, I threatened to throw thekid outside today and then, hey,
I threw the kid outside today.
You know, this was just thenatural progression of things.
And I said well, daddy, I'mgoing to put his ass outside If
he keeps acting like this.
If you do you have an answer?
Is there something that youthink we should do?
He's like I don't know.
And he just got worse and worseand worse.
And I said get outside.
And I put him the fuck outsideand I locked the door because he
(26:45):
came right after me and pushedthe door into me and I said, no,
get outside.
And I closed the door and Ilocked it and he was trying to
get in like Fred Flintstone,beating on that door, screaming,
and I said through the door no,no, you cannot come in the
house like that.
You have to calm down.
You want to yell and scream.
You're going to stay outsidewith your outside voice.
When you can use an insidevoice or a hunting voice, you
(27:08):
can come back in the house.
And he just wouldn't.
So he goes over to the nearestwindow, puts his face up to it
and starts screaming.
And then he goes to the nextwindow and just screams.
And he just did that all around.
He did all the main floorwindows first and then he went
and chased all the second floorwindows and he went to every
(27:28):
single one and we were watchinghim through each window just to
keep an eye on him and make surehe didn't get hurt or do
something stupid.
So we're watching him, but hecouldn't see us that we knew of.
He could see us in some of therooms and that's why he would
put his face on there and scream.
But well then we wanted to goupstairs and get a bird's eye
view and make sure that we knewwhat was around, and you know we
could just keep an eye oneverything and him so
(27:51):
surroundings are safe.
He actually, he didn't see usdownstairs anymore.
Maybe he figured that we wentup, but he went to all the
upstairs windows and startedlooking in and just screaming
and I knew he couldn't see us.
And then at one point I thoughthe did see me and I was like,
oh no, he saw me.
So now it's become a game to usand he's just out there working
(28:12):
it out, but that actuallybecame a thing, believe it or
not.
I had to throw him outsidebecause he was acting like an
animal and that was the only waythat I knew that to teach him.
I don't have any help, you know, and he has no, nothing, no
input from anyone.
He's on this waiting list.
Still it hasn't been funded,he's not getting anything and I
(28:33):
don't think that school is goingto help, you know.
So I know it sounds terrible,but that's what I did.
I had to because I, you know, Iwas honestly afraid that he was
going to hurt me or himself inthe house.
It's a lot safer outside.
There was just grass.
There was nowhere he could go.
There was another time, a verymemorable time of me having to
put him outside, actually acouple different times.
(28:55):
Another time that I did it, itwas a beautiful day, beautiful
day outside, and I put himoutside.
I had to get some stuff doneand I actually had clients
calling me and I couldn't dealwith them.
You know he wouldn't let mework.
So I put him outside and Icould watch him, because he's
just going to go right in frontof my window, right in front of
my office.
It was almost like he was inthe same room but at least there
(29:16):
was a window and a wall thereand it significantly reduced the
noise and the stress just byputting him on a different side
of the house and I could stillsee him.
But he went right over in thisbeautiful part of the yard.
It was real, real nice and likemossy, and it was just
beautiful.
He just went right over there,turned around, looking straight
(29:37):
in my office window windowthey're big, big windows and he
just dropped to his knees andscreamed at the top of his lungs
.
I know the neighbors I mean theneighbors were far away.
We had no neighbors that wecould see, but you could hear
them because there was wateraround and the noise travels
easy and I know they all are.
I mean, and this happened allthe time, whether he was locked
(29:58):
out or whether he was with usand just trying to fight me
outside, he was constantlyscreaming and I felt really bad
and I felt like, geez man, isanyone going to like come over
here and see that, whethersomething's wrong?
I mean, these screams are bad,you know, and he's looking me
straight in the face and justscreaming on his knees in my
(30:19):
yard on a beautiful day, it wasbeautiful outside.
It was so sad and I justremember him doing that and he
just he screamed right there fora really long time, a long time
I don't even know how long itwas, but he just sat there and
screamed constantly and I thinkthat was how he was trying to
get back at me for putting himoutside.
(30:40):
So these are the types ofthings that we had mostly I had
to deal with while waiting forservices to become available for
him.
This went on for what?
Like a year and a half.
This went on the whole timethat he was home out of school
and it continued after that.
But I mean, I dealt with thiswithout help for a year and a
half before he finally gotservices.
(31:02):
So for that whole year and ahalf I talked to that lady at
the state level that I told youabout and I, you know I would
call her, she would call me andI was just trying to make waves
and make an impression and showher how miserable I am.
And she could hear him while Iwas talking.
I didn't talk in front of himand let him hear me say anything
about him, but she could hearhim, she knew.
(31:25):
She knew I needed help andthere was just nothing that we
could do.
Another thing that I rememberabout having to put him outside
was during the winter.
I had to put him outside again,and this takes some doing.
It was really strange.
I think maybe he was just usedto it by this point, but I had
to get him dressed.
I couldn't, I can't, stick himoutside, you know.
So this means snow pants andsnow boots.
(31:47):
I mean, this is deliberate,right, and so I somehow figured
out a way, and I think his dadwas with me the first time.
We did this one too.
Maybe that's how we figured itout together, but we figured out
a way to endure the torture.
Now see, in my eyes, these werenot meltdowns.
I wasn't familiar with what ameltdown really was.
I never had actually beentrained on any of that but I
(32:10):
really don't believe it was ameltdown.
This was deliberate.
He is very deliberate, and I donow know the difference between
a meltdown and an asshole, andI think he was just being an
asshole and I think he deservedto be put outside.
There was no other way for usto survive it.
Just saying, I was not beinginsensitive.
There is a difference and thiswas not something that he was
(32:32):
not in control of.
I guess I'll say it that way hemakes his choices, he is very
deliberate, and we had to make achoice too.
So I said we need to put himoutside.
And his dad was like oh my gosh, we need to get him dressed and
we need to put him outside.
So we figured out somehow toget through the can't believe
(32:55):
that he let us get him dressed.
But I think that he knew thatI'm doing things right now that
are going to get me put out likea dog, and I know it and I'm
just going to.
Maybe that's what he wanted.
Maybe he wanted to be put outlike the dog, you know,
completely dressed.
I mean pants tucked into hissocks, full snowsuit put on
(33:18):
boots, hat, gloves, everythingScarf.
I mean the whole nine.
This was the first time we hadto do it.
We bundled him up and threw himoutside and we said, yeah, go
out there and work it out, youknow, because he loves snow, he
loves cold, he just loves thatstuff.
So you know, look, it's notthat bad to get thrown outside.
Obviously, you're bored insideand you're torturing us.
You know.
He just went out there and satin the snow and he laid on this
(33:40):
big snow mound from the snowplowand you know we were like, okay
, cool, and he would just laythere in the snow.
It was really kind of cute.
He doesn't know how to makesnow angels.
We've tried to teach him, buthe would kind of wiggle around
in the snow and he was having agood time and he totally forgot
that he was trying to make usmiserable.
So that did work.
However, after that first timewe might have had to do it one
(34:02):
or two more times and he wasagreeable.
But then this one time sticksout in my mind.
He went out to that snow moundagain and I thought I'll just
watch him.
He's, you know, he's so cutewhen he's on the snow mound.
I just love watching him in thesnow because he just loves it.
And we had such great insulatedclothing because of where we
lived that we weren't worriedabout him getting wet or cold,
(34:24):
so it was really therapeutic forhim.
We thought and I thought, ok,there he goes to his little snow
mound.
He's going to forget all aboutbeing an animal here.
And he went there and laidthere for a minute and then he
sat straight up, got on hisknees and roared just just this
terrible, terrible roar, and hethrew his gloves off.
(34:47):
He took something else off too,maybe his beanie cap or
something that was under hishood and he started banging his
head on the top of this snowhill that was made by a snowplow
and those are not soft and Iwas horrified.
At first I was like, wait, didhe just do?
And then he did it again, holyshit.
(35:07):
So I had to run outside and getdown here right now, and he
wouldn't stop.
And he's just beating his headon this frozen hill of snow.
I had never, ever seen him dothat before, ever on anything,
in any situation, ever.
Then this became normal.
I couldn't put him outsideanymore because this became his
(35:28):
thing.
So now he could only go outsideif he agreed.
I couldn't do it anymorebecause I couldn't watch him
damage his brain like that.
And I went out there andchecked that snow hill and it
wasn't as hard as I thoughtbecause he wasn't on the icy
side of it.
So it was still not ideal, butit wasn't as hard as I had
(35:48):
expected it to be.
So I was relieved about that.
I kind of fell into it a littlebit, so it wasn't bad.
But he kept seeking out surfacesthat were harder and harder and
he did end up hitting his headon some ice glazed snow.
Then he ended up doing it onsnow that was barely packed and
the only thing underneath it wasa sidewalk.
(36:10):
Again, I was horrified.
You know, I had never seen thatbefore.
I have never seen any child dothat before ever.
I mean, I've seen the kids inhis classes.
They wear helmets and stuff andI get it, but I've never seen
it, like I've never seen himbite himself until the other day
, recently.
You know, I've never seenanybody do that with their head,
unless it was in a movie.
(36:30):
I mean, it was just horrific.
When Spring or Summer camearound, he did it again on the
concrete, and I was already doneputting him outside.
You know, I'm not going to dothat anymore.
I guess I'll have to take himacting like an animal in the
house because I'm not going tohave him going out there and
getting brain damage.
So you know, that was over andhe was just outside to be
outside, you know, and he did itagain and this was during a
(36:54):
phase where he did nothing butscream.
He screamed constantly.
We would say.
At this point we were like doyou want to go outside?
Do you need to go outside, youknow?
And if he made the decision togo outside, he just kept banging
his head and he starts banginghis head on the concrete all the
time.
And I just started taking himto the ER.
(37:15):
I didn't know what to do, likethere's something wrong with him
and I need to make sure he'snot bleeding in his brain.
What the fuck is going on withthis kid?
This is when I found out that ifI crack my truck window, you
know, just about a half inch toan inch it would stop him from
screaming.
It would stop him fromeverything If he wasn't
screaming.
(37:35):
He was just obsessivelyrepeating my name all day long
Shendell, shendell, shendell,shendell, shendell, rosie, rosie
, shendell, shendell, shendell,shendell, shendell.
I mean nonstop.
There was no break.
He would latch onto some soundand he would just hammer me with
it.
So every time I'm driving himto the ER, and that's all I
would get.
(37:55):
We're at home, and that's all Iwould get.
We were in the waiting room andthat's all I would get.
He just never stopped.
He didn't even take a breath.
He just kept hammering me withthis stuff and I'm bringing him
to get evaluated like threetimes a week at this point
because he keeps hitting hishead and if he didn't hit his
head, his behavior was so weirdI thought maybe something was
(38:18):
wrong with him.
It was really, really bad.
There's a lot more to this story.
I have to stop now because Iagain run out of time.
I have to go do this mom thing.
He was having a thing and Igave him extra cannabis medicine
and I told him because today'spizza day and it's very out of
(38:41):
character for him to act crazyon pizza day I told him I will
take your pizza away.
You need to control yourselfand make good choices.
So those two terms still workvery well.
As soon as I say controlyourself, it's almost as if he
had been hypnotized in the pastto when he hears that term, he
closes his eyes, resets andtakes a deep breath, because
(39:01):
that every single time I saythat that's what he does.
So those things still work andI did get him really high with
his cannabis today because I'mjust not in the mood.
But I wanted to tell you thepast two days I have been having
a hard time.
You know I just I'm very busy.
I have a lot of irons in thefire and it's all around this
(39:22):
lifestyle change, around thispodcast and the change that I'm
trying to create in the worldfor people like us.
So I do.
I have a lot of irons in thefire and I feel very alone.
I would try to call some kindof you know, therapy or
something, but the state hastaken away my insurance and
they're making it hard for me toget it back and they're all
(39:43):
telling me the wrong stuff.
So I'm having that much of ahard time right now.
I'm going to be fine.
I'm just having a hard timeright now because I do feel very
alone, because all of thethings that I'm trying to do,
only I know how to do them and Ihave no help.
So everything is on myshoulders and the things around
here are not the way that I needthem to be yet and we're still
(40:06):
having trouble with thistransition of me taking over.
Everything is just chaos.
So I've been having a very hardtime the past few days.
Today would be day three.
So the two days before today,thursday and Friday, I've been
kind of down in the dumps andJacob's been picking up on it.
Even though I'm not crying, I'mnot pouting, I'm always putting
(40:27):
on a happy face around him.
I'm never directing my sadnessor anger or rage or
disappointment towards him.
I'm processing those feelingson my own and I treat him
exactly with the respect that hedeserves as a human being.
And I'm processing thosefeelings on my own and I treat
him exactly with the respectthat he deserves as a human
being and I'm very nice to him.
There's no reason for him toalways ask me these things, but
he has been really making alittle bit of a breakthrough in
(40:50):
speech by kind of babysitting meand he's just been asking me
are you okay?
And a lot of times that's justbecause, like, if you burp in
front of Tweedledum, he'll belike, yeah, okay.
And you know so Jacob picks upon things that people say all
the time and then he'll use them, even out of context, he'll
just say them.
So a lot of times that's whatit is.
But this is actually directedtowards my energy and he's just
(41:13):
asking me are you okay?
And I was honest with him.
You know I don't lie to him.
Sometimes I do, but most of thetime I'll be honest and I said
the other day I'm just a littlesad, but I'm all right, you know
.
And then yesterday he sat downwith me on the couch.
He wanted to watch Blippi,blippi.
You guys, if you haven'tchecked the show out, you got to
.
He loves the show.
It's a really nice pacifierright now.
(41:35):
But he sat down to watch Blippiand instead of watching Blippi
he watched me.
And he kept asking me are youokay, are you sad?
And after a while we were justsitting there watching TV.
I was smiling and watching theshow, I wasn't actually feeling
sad at the moment, but he saidoh, come here, rose, and he put
his arm around me and gave me ahug.
(41:56):
He said I know you're sad, it'sbe okay.
I just, you know, every once ina while you're just proud.
I'm just proud of him right nowfor being, you know, so
compassionate and empathetic andusing words and emotions in the
right circumstance, and I justthought that was really awesome.
So I think that's where I'llleave it today and I've got to
(42:19):
go now, but I promise my nextepisode is going to start out
with the experiences that webegan to have around therapy and
options that were available tohim.
So I think that you knowJacob's message is for everybody
out there in our position.
If you're in this boat with us,jacob wants you to know.
He knows you're sad and he saysjust be okay, you hang in there
(42:41):
, you're a superhero.
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