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May 14, 2025 15 mins

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Shannon shares her experience stepping back from caregiving duties to focus on her mental health after 18 years of continuous care for her son with severe autism.

• Taking a temporary break in a camper near home to restore mental health after reaching burnout
• Applying for fiscal sponsorship to pursue the dream of creating supportive communities for families affected by severe autism
• Jacob demonstrating remembered turn-taking skills despite lack of formal therapy
• Discovering disturbing nighttime behaviors through a video monitor that explained Jacob's severe insomnia
• Using the monitor's intercom as an intervention until Jacob ultimately destroyed the equipment
• Planning to share personal breakthroughs that have helped with mental health struggles

Please feel free to contact me through email at contactparentingsevereautism@gmail.com, text fan mail at psabuzzsprout.com, or through the Parenting Severe Autism podcast Facebook page.


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Email: contact.parentingsevereautism@gmail.com


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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.
Thanks for putting up with mylast episode, my dream of the
blueprint for families like mine.
I really do believe thatgetting caregivers and those
suffering from severe autisminto nature will help everyone

(00:41):
function better, and I reallylike the idea of small
communities of people like us sothat we can all learn about
each other's kids.
We already understand thedelicate nature of things.
We can teach each other things.
We can look out for each other,give each other respite, and I
really believe that it'ssomething worth fighting for.
So I have applied for fiscalsponsorship, which just enables

(01:04):
me to receive donations withoutbeing a corporation or an LLC or
a nonprofit, because those taketoo much time, effort and money
to set up and I'm going withthe fiscal sponsorship instead.
So I do have an interview witha company for that.
They really like what I'mputting out there and they got
back to me within 24 hours.
They said it would take themfour weeks to get back to me.

(01:27):
So I think we're looking goodon that and now we'll get back
to regular podcast programming.
I want to first say that I kindof ran away from my family.
I am going back, but that thingwith the father-in-law
practically giving that houseaway to strangers, it really
messed me up and I just Icouldn't stand to be around

(01:48):
anybody.
And thankfully our son althoughhe is running around like a
psycho, he gets along with hisdad pretty well right now.
He still is doing someself-harm.
But you know, there's reallynothing I can do at this point
with my mental state.
I can't be of any assistance tomy spouse.
It really does take both of us,but I can't stand to be around

(02:10):
anybody at this time.
So the father-in-law was verygracious in loaning me his
camper that he bought anddoesn't use, and I'm out here at
a local campground I'm only 10minutes away from the house and
I'm just trying to get somehealing done and I've got to do
this.
I'm only 10 minutes away fromthe house and I'm just trying to
get some healing done and I'vegot to do this.

(02:31):
I was very unhelpful, you know.
I was finding myself just - Iwanted to wring necks! I was not
able to absorb anything to helpmy spouse out, and so, whether
I'm there or not, he's still notgetting any help from me, so I
hate to say it.
Getting any help from me, so Ihate to say it, but I had to
leave and they're all being verykind and allowing me this time.
You know, I've spent 18 yearstaking care of the family,

(02:53):
taking care of our son and thathouse thing.
It just broke me.
So I'm out here trying to heal,but I'm still podcasting
because it's super important tome.
Now, in the last episode, beforeI introduced my blueprint to
you, we were talking aboutlearning to take turns, I
believe, and you know he Jacobused to get back reports from

(03:16):
school when he was very young,from when they would be playing
games in class or in therapy,and he was a very poor sport and
sore loser.
That was like the one thingthat they would always write
about.
He got great, you know, jacobhad a great day, but Jacob is
terrible at losing and he'sterrible at playing games

(03:38):
because he doesn't want to loseand he was vicious, and so that
was something that they workedon in therapy and, after a
couple years of therapy inschool, on how to play games
with the possibility of losingand how to be okay with losing,
and we tried to work on that athome as well when we found out

(03:59):
because I mean, you know you're,you're gonna lose, you have to
learn how.
So we thought, well, that'sgood family time for us.
When he was younger it was fine.
You know, he actually overcamethat.
You know, I really wish hecould have more therapy.
Just the other day he mentionedtaking turns.
Again, we were on a walk and Ithink that I was talking and he

(04:21):
tried to talk and then hestopped without the cue of me
saying I'm talking, it's notyour turn, it's my turn.
So he just stopped on his ownand then when I got done talking
, he said Jacob's turn, the bestthat he could.
And I was so proud of him and Isaid yes, it's Jacob's turn.
And then another time in thehallway he was doing oh, he was

(04:42):
in the bathroom, and I saidJacob, is that you in the
bathroom?
And he said yes, I said okay,and then when he came out he
said your turn.
You know, he doesn't get anytherapy input and he doesn't get
any education, he doesn't getany services at all.
So when he pulls these thingsout of his memory bank, it's

(05:04):
really nice.
I mean, we do our best ineveryday life.
But I've mentioned before,there's just no time for us to
therapy him and we're nottherapists.
It's quite a struggle, but Ithink that when he mentioned
your turn and Jacob's turn, Ithink to me that's him
indicating that he's ready tobring that back into rotation of

(05:27):
learning to take turns or doingactivities with the family that
promote turn taking.
So I always try to payattention to the little things
that he does bring up or bringinto an activity, because that's
my only indication that perhapshe's ready for us to use that

(05:47):
as an interactive tool, you know.
Now I want to mention a coupleof episodes ago I told you that
I was going to post the video ofthe insomnia chapter of life
when we got that video babymonitor.
But you know what?
I can't get the film, I can'tget the video to play well

(06:08):
enough once it's processed intothe computer and then as a post.
I don't know, it was recordedon a cell phone from the monitor
screen and it's just nottransferring very well.
So I'm just going to tell youthis was some exorcist shit that
we were seeing.
That's why I wanted to share itwith you.

(06:28):
We finally got this monitorafter who knows how long he
wasn't sleeping and we put it inhis room and he didn't know.
I mean, he knew it was therebut we didn't bring attention to
it and he had all kinds ofweird stuff in his room so he
didn't seem to mind.
It didn't have lights oranything that would attract his

(06:49):
attention.
In fact, it did have one lightto indicate power and I covered
it with electrical tape so thatit didn't bother him and didn't
draw attention to itself.
So my spouse and I would go tobed long after we would put him
to bed, probably an hour to twohours later.
And it had sound and video.
So we would just, you know, laythere.
We put the screen facing downso it didn't light up our room

(07:12):
and keep us from being able tosleep, but we would start
hearing these weird noises andso we're like OK, you know, we
were very afraid to look.
It was quite an adventure justbetween us trying to see should
we look?
What are we, you know?
And so we finally look at thescreen for the first time and
our eyes got wide as saucers.

(07:32):
Our jaws hit the floor.
This child was laying flat onhis back in his bed and then,
out of nowhere, no soundindications, no little bitty
wiggles or jumps or spazzy movesor anything, just out of
nowhere.
He would sit straight up in bedand his eyes were wide open and

(07:55):
, with the infrared type ofcamera that sees in the dark,
his eyes were glowing red and hewould make this really scary
face where he puts his tongue onthe roof of his mouth, opens
his jaw as wide as it'll gowhile his tongue is on the roof
of his mouth, baring all of histeeth, and his eyes are just so

(08:19):
big and his eyebrows are pointedand evil looking, and then he
would just start flappingviolently and shaking the entire
room.
And then he would just startflapping violently and shaking
the entire room and we couldn'thear that in our room without
this camera.
We had no idea this was goingon and this is what happened
every single night for hours.
We started getting up and youknow we would go to his room

(08:45):
First.
My spouse would get up and hewould go around the corner and
down to his room and go in thereand try to calm him down.
Hey man, you know you there andtry to calm him down.
Hey man, you know you need togo to sleep, buddy, let's, you
know, and try to calm him down,and this went on and on and on,
and then my spouse would fallasleep and the kid is still
doing it and it's getting worseand worse and worse.
So every single night now I amnot sleeping, I'm up monitoring
this child and trying to get himto calm down, and I'm tiptoeing

(09:08):
down the hallway and going inthere and trying to calm him
down, and I could hear.
As soon as I would leave, Iwould get down to the corner of
the hall and he would startagain and I could hear it.
So I would go back and I endedup like stalking him in the dark
in the hallway and just waitingfor it to happen, because every
time I'd get back in bed themonitor would go off and I'm

(09:29):
like, you know, come on, man, sowhy get back in bed?
I'm just going to stand here inthe dark and wait until I hear
him, and then I'm going to go inthere and lay the law down.
You know, and it never, everworked.
I could not get him to calm down, His dad couldn't get, you know
, so this was really having noeffect on the insomnia itself.
But I was trying to catch himand eventually, after I don't

(09:54):
know how many weeks of dealingwith it that way, I was just fed
up.
I mean, you know he would situp and do that stuff and I swear
his head would spin around.
It was just scary and violent.
I mean, of course you're notgoing to sleep and of course,
with all that energy output,you're going to be exhausted.
It doesn't make any sense.
How can you live like this?

(10:16):
And are you choosing this?
Or is this just something thatovercomes you?
I don't know.
But eventually I used theintercom feature on the monitor
and his dad was there.
He was awake and I said I'mjust going to press this button,
I'm just going to do it becausewe were tired of getting up and
down.
And his dad's like, okay, goahead, you know.

(10:38):
And then I did.
I pressed the button and I said, jacob, please go to sleep now.
And it was like the voice ofGod came into his room and he
just didn't know what to thinkof that.
He's looking around from hisbed like what, where's that at,
you know, and we're just in ourrooms laughing.

(11:00):
But his dad was scared to deathafter he saw Jacob hear me and
start looking around.
You know, you could just see iton his dad's face like, oh shit
, now we really messed up.
Eventually he stopped evenlistening to that.
It did work for a while becauseit spooked him and he would
just lay down real slow with hiseyes real wide and then he

(11:21):
would close them and pretend tosleep.
But it helped and I think hewas starting to get rest because
he was a little bit freaked outby the whole thing.
So I think he got a little bitof rest here and there by us
doing that.
But eventually he got prettypissed off about that and he was
like no, you're not going tocontrol me, and it had no effect

(11:43):
on him anymore.
After I don't know probablyanother couple weeks of us doing
that.
He did not destroy that, whichreally surprised me.
We ended up taking it with uswhen we moved here and we had it
set up in his room here for alittle while and then, when he
was in the destroy everythingmode, he smashed the hell out of

(12:05):
it multiple times and itdoesn't work anymore.
He dismantled it and justkilled it over and over again.
And I was upset because one, itwas a really nice piece of
equipment and it actually waspretty expensive.
But two, I'm two flights downnow.
I'm two flights away from himand I can't understand what's
going on.

(12:26):
I don't.
There's no way to monitor hisbehavior and once that monitor
got broken, his behavior goteven worse and we had no idea
until we were there for theaftermath.
So it really would have savedus probably a lot of drywall
food throwing.
You know, we could have gottena jump on it if we had the

(12:48):
monitor, but he made sure thatwe didn't.
This episode is going to be cuta little bit short because I'm a
little discombobulated withmoving my entire podcast office
into the camper andunfortunately I don't even have
my outro music for the end ofthe episode, so you won't hear
that either.
I really like that at the endand I'm sorry.

(13:09):
I will bring it back as soon aspossible.
With my mental state and I haveexperienced three breakthroughs
that have shown physically injust the last two weeks.

(13:30):
It's really amazing.
So I'm going to see if I canget you some extra information
before I tell you about it, justin case you feel as desperate
as I did and still do.
I want to share anything I canwith you, as you know, from one
parent and caregiver to another.
Not all the episodes can beabout the kids.

(13:51):
Some of them have to be justabout us, you know.
So in my next episode I amgoing to mention that and give
you the information relevant tothe program.
Now my plan is to review mylast few podcasts and make sure
I haven't missed anything as faras follow-ups, and I'm going to
start filling you in oneverything else, before and

(14:12):
after he lost his skills andeverything that started to
happen.
Because after he lost hisskills and the devastation wore
off for us, we started gettinghim extra help, and it wasn't a
choice, it was just that thelist that we were on finally got
funded and that's where thatmonitor came from.

(14:33):
So I will have a lot moreinformation for you on that.
I just wanted to put this outthere and let you know I'm still
alive and I still care verymuch.
I'm just doing a little bit ofextra rehab on myself right now.
Please feel free to contact methrough email or text, and email
is contact.
parentingsevereautism@ gmailcom.

(14:55):
You can leave me a text fanmail at psa, short for Parenting
Severe Autism, psa.
buzzsprout.
com And I think that I'mreceiving messages on Instant
Messenger from Facebook on myParenting Severe Autism podcast
page so you can give that a shotas well.

(15:15):
It's a little glitchy for meand I'm not always able to get
the messages directly in time,but I welcome your feedback.
I welcome your questions.
I hope you had a good Mother'sDay, and if your child was not
able to wish you a happyMother's Day, I'm sure that they
would if they could, becauselook at you, kicking ass and
everything! You hang in there.

(15:37):
You're a superhero.
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