July 9, 2025 • 34 mins
Shannon shares the experience of returning her son to school after he was abused, revealing the challenges of finding appropriate accommodations and fighting the system at every turn.
• School couldn't handle her son's needs, requiring a reduced schedule to prevent overwhelm
• Battle over using a communication notebook that had always worked as a behavior management tool
• School failed to provide mandated therapy services due to transitions being too difficult
• Discovery of intensive therapy through Innovative Counseling that provided 40+ hours of effective support
• Advocating for IEP rights and finding alternative solutions when schools fail to meet obligations
• Recognizing that behaviors are communication and require understanding rather than judgment
• Setting age-appropriate expectations even with developmental disabilities
• Working toward creating Safer Lifestyles Respite Communities based on these experiences
Please follow us on social media and help spread awareness about our GoFundMe for Safer Lifestyles Respite Communities. You can find the link in my bio on all platforms or email me at contact.parentingsevereautism@gmail.com with your stories and input.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (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.
A quick update on my bigproject the S.
A.
F.
E.
R.
Lifestyles Respite Communitiesis that I'm trying to quickly
learn how to do, I guess,graphic design or something.
I'm trying to learn how to doanimated video things.
(00:42):
I'm incorporating an animatedbuild - out of our flagship
location and I tried tooutsource that because I simply
don't have the time to dosomething like that.
But I am now making the time todo that because I tried to
outsource it to someone onFiverr and they want around $800
.
And that's typical across theboard.
(01:03):
So I don't.
.
.
.
.
I have more time than money.
So I'm going to work on thatmyself and I have a video that
will be coming out with thataudio that I'm going to just
spread across as much socialmedia as I can and I'm hoping
that you guys will share thisvideo.
When it comes out It'll go onmy YouTube and then I'll have
(01:25):
little pieces of it sprinkledaround on Facebook, instagram
and TikTok and I've started aGoFundMe for it.
So if you wanted to check ortell someone else to check my
link on any of my socials.
They can check my link in bioand be able to donate to the
GoFundMe, which is all set upjust to fund this dream
(01:48):
community of ours.
And if any of my episodes orstories have touched you in any
way, made you laugh, cry or justfeel like you're not as alone
as you thought you were, you canalways support the podcast by
clicking the support link andyou can donate as little as a
dollar and, as you know, I amtrying to save up money to help
(02:08):
other families who are in needand cannot afford some of the
typical things that kids likeours need in regards to food
safety, therapy, etc.
Thank you so much for alwaysliking and sharing my episodes
and my posts on social media.
It is definitely helping me togrow.
I've experienced a little bitof a backslide with exposure,
(02:30):
but I mean it's summer, so Iunderstand.
thatYesterday was the 4th of July
and I was fortunate enough tohave my spouse and my son.
My son actually said he wantedto come and hang out with me for
4th of July.
I had extended the invitationweeks ago, but my spouse said he
wasn't going to come.
I don't know.
I thought it would be awesome.
I mean, yes, it's already knownthat our child does not like
(02:53):
fireworks, but I mean he likesto look at them, he just doesn't
like the sound.
And I'm on the river down thereat the campground and I just
thought it would be amazing, andit truly was.
So I'll wrap up this episodewith a quick story about that.
But I wanted to get back intowhat happened when our son
started to go back to schoolafter they had blamed us for
(03:16):
making him worse.
One thing was that we learnedvery quickly that he could not
handle a full week.
So, because we had alreadypulled him out of school and we
knew that he was abused andmistreated by not only one
teacher, but just everyoneseemed to have their own idea of
how he should act, how heshould be treated, what he
(03:37):
should be made to participate in, and apparently what he
actually wanted was not aconsideration.
So we were very watchful thistime around.
We had gotten a false sense ofsecurity from all the great
experiences he had when he wasyounger in school and we thought
everything was going to be fineuntil he got abused.
(03:57):
So now the whole landscape ofschool has changed for all three
of us.
We start watching his energylevels, his facial expressions,
his behaviors and his echolaliavery closely to see if there are
any even minuscule differencesthat we didn't see when he was
at home with us.
(04:18):
The first thing we learned isthat he was absolutely exhausted
.
It was way too stimulating.
At school they had him doing waytoo much with all the children
and the bells and you know justall the stuff, because they
didn't want him in a specialneeds classroom.
They wanted him put in generalpopulation or whatever you call
it.
You know, and we didn't likethat idea at all, but that was
(04:41):
their program.
We didn't.
I don't know at all, but thatwas their program and we didn't.
I don't know.
Our autism advocate lady washelping us as much as she could
and she kept telling us that ifthe school cannot provide for
his needs, they have tooutsource and they have to pay
the bill for the transportationand for the school that they're
sending him to.
You know the whatever tuitionor any charges that would
(05:04):
normally occur for him to go toa different school district.
That school that he's supposedto go to who's failing and
unable to meet his needs issupposed to have to absorb all
the costs.
So we were just fighting forhis rights the best that we
could and we had IEP meetingsevery couple of weeks and they
were mostly emergency scheduled,so within 24 hours I believe,
(05:25):
and she was always there like abulldog, and it was so helpful
because I we just didn't have it.
You know, trying to run thebusiness and all the stuff that
we were into and trying to keepour son just above the sad and
angry line, anywhere above thatwould be great, you know, and
that's all our responsibility.
We just realized very quicklywithin the first week that a
(05:48):
full week of school was just notgood for him at all.
He didn't look well, he wasvery tired, he was irritable,
his eyes just looked sick andlost and alone and it just
wasn't good.
So we thought, well, maybe heshouldn't jump into a full week,
let's scale back and call thatan accident and let's give him,
(06:10):
let's try four days a week.
So we tried four days a week.
We had to split it, so we didMonday, tuesday, thursday,
friday and that worked outpretty well.
He just needed that break inbetween because it was just way
too stimulating.
Then we started noticing, firstof all, the school didn't want
to use the notebook, thecommunication method.
He just needed that break inbetween because it was just way
too stimulating.
Then we started noticing, firstof all, the school didn't want
to use the notebook, thecommunication method that we had
had in place for all thoseyears that always worked.
(06:33):
And they wanted to complainabout his behavior and him not
paying attention and not doingwhat he's asked and all this
stuff.
And we're like well, did youwrite it down in the notebook?
All they wanted to do was sendme emails, which I will share
some with you in my next episode, because it gets a little bit
out of hand, for sure.
But they're like no, we don'thave time to write in the
(06:53):
notebook, but you have time toemail me.
Do you think I have time tocheck emails?
I don't, you know.
So that was just butting headsfrom the start and they just
didn't want to.
And we kept telling them it'snot a matter of the parents want
you to communicate this waybecause they don't have a
computer or something like that.
It's that that's a behavioralmanagement thing for our son.
(07:16):
He knows what it means when ateacher opens his notebook and
starts writing in it.
I don't understand how you candeny him that satisfaction or
anxiety that he is going to feelwhen he knows you are reporting
his behavior.
He loves a good report just asmuch as he fears a bad report,
and that actually makes him actright.
(07:38):
So, no, we're not using thenotebook and we don't want to
use the notebook.
It's too hard, it's too muchwork.
He requires too much attentionat school.
We can't ask his para to writedown every single time that he
disobeys or that he acts out.
Okay, well, so what are yougoing to do?
(08:00):
You know, they said that theyneeded motivation for him and
they said that they neededconsequences for him.
And they're asking us and allthey want to do is food.
They want to use food formotivation, except there are a
lot of foods that he can't eatand we don't think food is a
(08:20):
healthy method of motivation.
I don't care if it's apples andoranges, we don't want him
motivated by food.
So we told them that.
Well, usually the way it goesis that you have to write in the
notebook and you can writeJacob had a good day, or you can
write Jacob was bad during math.
I mean, it's really not thathard.
We don't need all the details.
(08:41):
It's not even really about that.
It's about him seeing you do it.
He knows where that notebookgoes.
He knows it goes straight tomom and dad and it matters to
him and we like it that way,because nothing else matters to
him.
We would like to keep thenotebook active.
It's a communication devicethat also helps monitor and
(09:03):
improve his behavior.
He will turn himself aroundreally quickly if he doesn't
want to get scolded at home forbeing bad at school and it's not
even you know, there aren'treal consequences.
I mean, what can you do?
You're not gonna.
You know what are you gonna do.
But he doesn't like us beingdisappointed.
His dad is a really good actorat that and he will be very
(09:26):
dramatic with his.
You know.
Oh goodness, jacob, this isterrible.
You know he'll do that kind ofstuff and it really hits home
with our son and we just alittle cooperation, you know,
just write it in the damnnotebook and then, once you
write it in the notebook a fewtimes, if he does not respond,
(09:46):
the next time he starts actingout, not only do you grab the
notebook and a pen, you also saydo you need me to call your dad
?
Because that is the ultimate,and we told them you don't just
pull it out every time.
That's why you use the notebook.
You know it's a progression andif he doesn't straighten up and
fly right, then you threatenhim that you're going to call
(10:08):
his dad and the school.
Just I don't know why, but theyjust couldn't grasp this concept
.
They refused to use thenotebook.
Then they want to startemailing.
Instead of calling dad, theywant to email mom.
And that's not how things work.
I don't have my nose in myemail all the time.
I'm running a salesorganization.
Hello, I'm on the phone, youcan call me or you can just fuck
(10:32):
off, because it just doesn'twork that way.
We never had an agreement.
And then they start wanting totext us.
And I am not a phone person, I'mnot a cell phone person.
When I had a landline phone, Idid calls with people.
My cell phone was my personalphone.
I turned it off and threw it inthe corner and there would be
days where I couldn't even findmy phone.
(10:54):
That was not an effectivemethod of communication and I
didn't understand why they wouldeven do that.
Now, I mean 10 years later, Iget it.
Everyone's got their phone intheir pocket or in their hand or
whatever, but back then wedidn't.
I don't know.
I just thought it was reallyjust look, I gave you a working
(11:14):
system and you don't want towork the system and it's really
not that hard.
That was a huge struggle for us.
Then I found out that when theystarted sending information
home, finally they were notsending information about
therapy.
This all moved very quickly.
I know I said we're in IEPs allthe time.
Well, this was, you know, I'mtalking about the first week to
(11:36):
two weeks of school here.
Before we had IEPs all the time.
We had only had one or twoalready, you know.
But we realized that there wasno report on OT or speech.
So during our IEP we went inthere and we're like, hey,
where's OT and speech and whydon't we get reports on it?
Oh well, we're here, but wewere having trouble getting him
(11:56):
to calm down and we haven'treally been able to give him OT
and speech.
Like I said in my last episode,that is because they want him in
a regular classroom and thenthey want to pluck him out of
that classroom, put him throughthat doorway and into another
doorway.
So now you've just forced mychild to cross two different
thresholds, which for him is anentire sensory processing thing
(12:20):
he's got to process walkingthrough that doorway into the
hallway, then walking down oraround, or however.
You get to the therapy room andcrossing over that threshold to
get into that, and that's athing.
One hallway, one threshold is a40 minute acclimation period.
Now they're asking him to dodouble that and have no period
(12:41):
of acclimation.
They just expect him to goright into therapy like
everything's fine and regular inhis life and he takes 40 to 45
minutes to calm down.
That's just the way it is.
There's nothing anyone can doabout it.
That's what happens.
Now they're blaming us andblaming him for not being able
to use the therapy services thatare offered through school, and
(13:03):
it's because of the way they'vedesigned his schedule.
We have told them a hundredtimes it doesn't work that way.
And then they kept insisting onhaving us do IEP meetings
during school hours and I kepttelling them well, first we were
like, okay, that'll be cute,we'll go there and we'll check
on him and we'll just look athim a little bit and he'll be
(13:24):
doing his own thing and it'll becute to see him in this
environment without knowing thatwe're here.
And then we get there andthey've got him in the room.
They make us wait and they goget him and bring him in the
room.
And I'm like, no, no, we havetold you this before.
You don't go get my kid andbring him through another
threshold.
To be in a room with a bunch ofadults talking about his
(13:44):
problems in front of him, thatis not cool.
He hates it.
He doesn't act right.
You wouldn't like it either andI'm not going to do it.
And I refused to have an IEPmeeting with him in the room and
I don't know why they actedlike.
That was such an asshole move.
I never liked it when I couldhear my mom talking shit about
me in my own house while I wasin my room.
So why would I want my child tobe in the room with every
(14:07):
single educator telling us whythey can't work with him?
They're not there to sing hispraises.
That's not what IEPs are for.
That's for them to attack himand for us to attack them.
That's what happens at IEPmeetings.
So what the hell?
Anyway, I just wasn't going todo it.
They found a way to let us havethe IEP meetings without him
(14:28):
being present.
It was just a mess.
They have absolutely no regardfor a family unit with severe
autism and how it actually works.
I don't know what they expectedJust another layer of stress
and isolation and refusal toeven try to meet us.
Where we're at with that.
At some point we found out thatthey were cutting therapy
altogether because he was notable to tolerate the school
(14:51):
hours.
So because he couldn't go toschool five days a week, I guess
they had to cut the amount oftherapy that they were able to
give him.
And then the time frame thatwas allotted for him to have
therapy happened to be on a daywhen he didn't go to school.
Let's say it was Wednesday, ifthat was allotted for him to
have therapy happened to be on aday when he didn't go to school
.
Let's say it was Wednesday, ifthat was the schedule that we
ended up keeping.
I can't even remember now, butlet's say he stayed on Monday,
(15:14):
tuesday, thursday, friday, andoh, it just so happens that we
cut your therapy allotment andthe therapists are only going to
be in the building onWednesdays, so you actually
won't get any therapy.
Now, that's what ended uphappening.
We also found that he could notride the bus.
There was something going on.
They would not keep that girlaway from our son.
(15:35):
They had extended the length ofthe bus ride and it was
actually faster to just drivehim by car Back.
When he was smaller he used tohave a 45-minute ride to school
and back, but he tolerated itwell because he was, I don't
know.
He would just sleep on the bus.
He had a blanket and a pillow.
It was in his IEP to have suchand he was supposed to be
(15:56):
monitored on the bus.
So someone always watched hisback and they put him, they
tucked him in and they let himsleep and he was a good rider,
you know.
But as he got older we'retalking that he's 15, now 16,
you know, the children arelouder and it just, I don't know
, just wasn't working out.
So we ended up with ouradvocate getting them to figure
(16:16):
out a new mode of transportationfor him to get to school,
because he couldn't ride on thebus for over an hour.
It was ridiculous.
So they ended up having a ladydrive a van, a minivan, to our
house to pick him up and drophim off every day, and that was
awesome.
I guess they had other kids inthe van.
He ended up completelydisrespecting that van driver,
(16:38):
because I know I've mentionedthis in other episodes he will
test you.
He will get right up as closeas he can to you and flap and he
was angry.
He was very angry back then.
He still can be angry, but hewas very angry back then and he
would angrily flap, but he never, ever wanted to touch anybody.
But he got up in her face whenhe got in the van and he flapped
(17:01):
right up in her face and sheflinched and that was it.
I mean, first time they evermet.
He got right up in her face andthat was it.
He knew I got this woman, I canscare her anytime I want and
I'm going to do it all the time.
So he was very abusive to herjust as far as knowing that he
could make her flinch, he couldmake her nervous, and he totally
(17:21):
took advantage of that.
So there was that.
But then we started throwing afit about the lack of attention
to his needs and the lack oftherapy options and we got
somehow referred to a place itwas called Innovative Counseling
, I believe, in Wisconsin, andthat started a whole thing of
(17:42):
therapy.
So we first had to have himtested by a psychologist.
So those meetings are about 45minutes to an hour scheduled on
the calendar.
We were in her office for about10 minutes.
She was like, okay, we're donehere.
She said that he's definitelyautistic and then that set us up
for the assessment withInnovative, which is where I got
(18:03):
those results that I posted awhile back about how severely
autistic he is.
That was the meeting.
It was like a three-hourassessment and it was really
because school dropped the ball.
They didn't want to help himand it was a blessing in
disguise.
So that's just a message ofencouragement to you.
If your school is dropping theball and they don't want to
cooperate, your IEP.
That happens a lot, even thoughIEP is law.
(18:27):
Whatever you put in that IEP isabsolute law.
If they're not doing it, you dohave a course of action, which
is to tell them that they mustsupply you with information and
providers who will do whatthey're supposed to do.
So just keep your head onstraight and try to let them
understand as kindly as possiblethat your child has rights.
(18:48):
Anyway, they said their firstrecommendation was 40 plus hours
a week of therapy.
Yes, that's what they said.
They wanted him to have over 40hours a week of therapy.
Because when I first startedtalking to them.
They knew that I had beenhomeschooling him and they
didn't understand that we weretrying to put him back in school
(19:09):
full time.
And they were just like, well,hey, if he's not going to be in
school, we should totally takethat time and give him therapy.
So I was also like you know,this is going to be in my home
and I don't know, I don't knowif I don't know if I can commit
to that, what am I supposed todo?
(19:30):
You know, I have to work andall this stuff.
So we started a lot lower thanthat but we did increase it
quite a bit.
You know they were willing togive him two shifts per day,
five to six times a week.
So they're talking like eightto 12 hours a day, six days a
week, is what they would havedone for him.
And I mean I thought that wasamazing, just to even it was.
(19:54):
I couldn't fathom it, honestly.
But first of all, to realizethat they really think he needs
that much, I'm like, oh my gosh,you know.
But then also like, wow, that'squite.
That's a lot of dedication thatI'm seeing from them compared
to what I see from the schooland the people who are employed
through them, through thedistrict.
So I was really impressed and Ididn't know what kind of therapy
it was.
I didn't have any idea ofanything.
As you know, I don't knownothing about this stuff, you
(20:16):
know.
So I guess it was ABA, but theywere telling me it was play
therapy and it was play therapy.
That's all they ever did wasplay with flashcards and you
know, just stuff like that.
I didn't see anything wrongwith that, and I have heard that
ABA is thought to be cruel.
It must just be some other veinof ABA that I am not aware of.
(20:36):
I just thought he needed OT andspeech and before we even did
that, they sent me paperwork inthe mail to fill out.
Before we even did that, theysent me paperwork in the mail to
fill out and they had memonitoring every interaction and
how he responded and how weresponded, and all and like for
two weeks, from the time he wokeup until the time he went to
bed, and then anything afterwhen he went to bed, if he got
(20:59):
up and did more stuff oranything.
They wanted a complete recordof every single thing that went
on that day, not just like Icooked sausage and I fed it to
him, but how he was acting aboutit Any sounds, any actions, any
echolalia, any single thingthat he ever did, expressions on
his face, anything.
I diligently wrote all of thisstuff down and they used all of
(21:24):
that information to devise atherapy plan, in addition to his
test results and what theyobserved while we were there.
I couldn't believe it that thatwas even a possibility to
therapy someone that much.
They would come over to thehouse after school.
They would be waiting for himwhen he got home I would have to
give him a snack.
(21:44):
They would therapy him throughdinner and it was just crazy.
So he would get home around3.30 in the afternoon and he
would instantly start therapy,probably until 7, 7.30, I think,
is when that stopped.
And then they would come overon the day that he didn't go to
school.
So on Wednesday they wouldtherapy him in the mornings and
all the way through into theafternoon, and then we ended up
(22:05):
seeing that therapy was actuallymuch more effective than school
.
So we ended up cutting his weekanother day short at school.
So he only went to school, Ithink, three days a week and he
had therapy the other days andafter school on the days that he
did go, it was reallybeneficial.
They were working on stuff thatthe school never would work on.
(22:27):
He loved everything that theydid.
It just sounded like they wereplaying all the time, but it was
really helping him and theywere working on triggers with
him and those ladies they wereso good, they were amazing.
I could never, never dosomething like that.
They were absolutely amazing.
I wish never, never, dosomething like that.
They were absolutely amazing.
I wish we never had to leaveWisconsin because he was on a
(22:48):
really good track for gettinghelp and advancing and maturing
and growing and everything fellapart when we had to leave While
he was at school.
I think the first time he was atschool before we pulled him out
, he was on some kind of like acoffee team where they would
push a cart around and delivercoffee to people and that made
me a little uneasy, but I'm surethey made it safe, you know.
(23:08):
But I was like, damn, my kid ispushing around hot coffee, what
are you doing?
But this time, when he wentback to school, I believe that
they had him working on stockingvending machines as his little
job that he was doing, and thenI learned that the shop class
made him some kind of a thing.
They got together and theysomehow they you know the
(23:30):
teacher communicated the needsthat he had and they made him a
little.
I think it was a toothbrush andtoothpaste organizer or
something and he would stock itwith toothbrushes and toothpaste
.
It was, I really can't rememberand he would stock it with
toothbrushes and toothpaste.
It was.
I really can't remember, but itwas really super cute and
touching that the shop classmade that specially for him.
But school was super hard.
(23:52):
It never got easier withanything.
So in my next episode I willtell you about the adjustments
that were made by the school inthe name of helping our son and
why I didn't think that theywere great, and I'll also share
with you a string of emails andthe tone and everything that had
gone on there.
I kind of got in trouble, Iguess I got hated on by the
(24:13):
school because of ourcommunications and I started
getting accused of being aterrible person.
So we'll share all of that inthe next episode.
That'll be really fun.
And yesterday was the fourth.
So my son said to his dad lastweek that he wanted to come see
mommy and watch the fireworksand my spouse had said that they
(24:34):
weren't going to come becausehe didn't think Jacob would go.
So I was pleasantly surprisedthat Jacob told his dad he was
wrong and they wanted to comeout and hang out with me.
So he did get to see some ofthe fireworks and they were
across the river and very faraway and so the sound was
muffled and delayed and it was,I think, a little confusing for
(24:54):
him.
But we could see a line allalong the river of a lot of
different people doing fireworksand it was really pretty and he
really enjoyed it, at leastlooking, and he wore his
headphones and everything.
But we were about a third ofthe way through the fireworks
and he was like I'm done, can Igo inside?
So his dad went and put him inbed and I thought it was super
cute that he was out there inthe first place.
(25:14):
You know I can't expect him tosit out there for 40 minutes and
finish the whole line offireworks, but that was really
cool that he tried and that hedidn't freak out.
But then, after the fireworkswere over from the city, the
people in the campground startedlighting off their fireworks
and of course those are superloud because they're right there
next to the camper.
You know, my kid is 24.
This has been going on all hislife and I'm just I'm to a point
(25:38):
with this stuff that it's justlike look man, I, you, you got
to take some responsibility foryourself and how you react to
stuff you can't seriously, it'snot new.
I go in there and he's likefreaking out.
He's holding his headphones andriding on that danger, that
high that I told you he likes toteeter on the edge of disaster.
(25:59):
I think that he actually buildsthis danger up in his head and
he likes that feeling of beingnervous and on the edge of a
meltdown.
He keeps looking to us forguidance and all we have to do
is say the wrong thing or theright thing in the wrong tone
and that'll set him off.
And frankly, I'm sick of it.
He's 24.
And I mean I'm just sick of it.
(26:20):
He's not five.
I don't care how long he wantsto act like he's five, he's not
fucking five.
So he starts freaking out andyou know, oh, it's dangerous,
it's dangerous.
And and his dad, you know, wasbabying him and he kept on the
way.
We've always kept on.
Oh, it'll be okay, it's just alittle fireworks.
Yep, it's just fireworks,that's right, it's just
(26:40):
fireworks.
So when his dad was donebabying him and he looked to me
for more and tried to tell meabout being scared and being
safe and everything, I justleveled with him and I said look
, you know that you're safe.
These are fireworks.
They do them every year.
You are 24 years old.
They have done fireworks everyyear.
(27:00):
Wherever we've been, you alwayshear fireworks.
So you know that you're safe.
You're still safe After everysingle year.
Here you are, you're alive andyou're well and you're safe, and
the fireworks are not coming inhere.
The fireworks are outside.
You are inside, you haveheadphones, you have a pillow,
you have a blanket.
Get it together, go hide underyour blanket and pillow if you
(27:22):
want to.
But you're almost 25 years old,you need to get used to this.
It's just fireworks.
And he instantly was like ohokay, you know, I swear to God,
it's just as much as we playinto it.
He will keep milking it.
You know, and I'm just done.
So I'm running experiments nowwhere it looks like his dad
(27:42):
still wants to baby him, andthat's totally fine.
I'm not going to fight thatbattle, but I'm going to do
things my way, as I always do,and when he comes to me for
babying and comfort at 24 yearsold and up, I'm not going to do
it.
You know, there are times whenhe needs comfort.
Just the other day hisgrandmother was over here again
and I told his dad watch hisbehavior, because every time she
(28:06):
comes over he ends up hurtinghimself within two to three days
, I think.
And then on day four they cometo see me and he's got bite
marks on his arm and he hadscratched his face the night
before and he was being a totalpsycho, according to his dad,
the day before that.
And again I reminded him yourmom was there, which was an
awfully funny thing, because wehad to go get our Jeep from the
(28:27):
shop and we needed a ride.
Tweedledum was supposed to takeus he always takes us because
it's his truck and just out ofthe blue they had this instant
plan when we learned that it wastime to go pick it up.
And he says nope, tweedledee'sgoing to take you.
Okay, well, that's weird.
Tweedledee almost never drives.
Why would you not want to driveyour own truck?
So, whatever, okay, fine, so weleave.
(28:49):
We're gone for what they driveto the campground to pick me up
and then we drive to the shop.
So we're gone like 15 to 20minutes the whole trip and we
come back to the house buthere's the grandmother my
spouse's mom, and I'm like what?
Jake was in bed when they cameto pick me up.
(29:09):
And then we get home, he's outof bed during his normal bedtime
during the day and hisgrandmother's here.
And I just thought that wasawfully funny that Tweedledum
was aware already that he wasnot going to drive, only
Tweedledee was going to drive us.
And then, lo and behold, what asurprise.
Jake's out of bed and thegrandmother's here sitting with
him.
I still think that's reallysuspicious, but I can't get
(29:31):
anyone else to agree.
So I guess I'm more of aconspiracy theorist than I
thought.
Anyhow, it did happen.
I swear to God, this is whathappens.
He gets sad, he gets lonely, hegets to knowing that his
grandmother doesn't love him theway that she used to, because
that's what she's showing himand he doesn't have a way to
voice it.
So he starts puncturing himselfand scratching his head and
(29:53):
acting out.
I keep trying to remind myspouse that behaviors are
communication.
It's not just like I feel likebeing an asshole.
He's trying to tell ussomething.
We have to try to listen orlook around.
And it's hard when you're in itand you feel like man, I'm
having a good day, I've been upfor two hours and I'm having a
great day, and then here comesyour kid just ruining your life.
(30:17):
It's hard when you're rightthere and you may not be able to
think of oh, what is he tryingto communicate to me?
This is not just a behavior.
This is his way of talking,this is his way of being verbal.
What is it?
What is it?
What is it?
And usually you just feelassaulted and you feel like you
have to defend yourself and yourpeace, and it's different.
(30:38):
But if we can continue to tryto look at these aggressive
behaviors as communication, Ithink that we might start to see
some sort of emotional patternof hurt or shame or something
that he's feeling, that he can'tidentify and that we have to
identify.
(30:58):
I told my spouse the other dayhey, I think that she either
needs to stop coming overaltogether or she needs to start
coming over more.
That's the only way, becausethe way that she stops in, you
know, with months in between avisit, and then she doesn't make
any promises to see him againand the visits don't go the way
he thinks they might in hisheart and mind.
(31:19):
It is causing him a lot ofdamage and I don't think it's
fair.
So we need to put our foot down.
You either need to tell hercome over more often and get him
used to seeing you and spendingtime with you, or just stop
fucking coming over, becausewhen you do it this way, it's
clearly only about you, it's notabout him.
If you were coming here to seehim, to make him happy, you
(31:43):
would do it more often, becausethat's what he needs.
He doesn't need a fly-by-nightvisitor.
He needs someone who loves himand drops by just to show him
how much they love him.
The way that you're doing it isnot right.
So, anyway, this is somethingI'm fighting for right now, and
while he was at the camper withus yesterday and this morning, I
(32:04):
saw great signs of peace withhim.
He seemed very happy andcontent with us.
I don't have a TV in there, Idon't listen to TV, I just want
silence.
I listen to the birds andthat's enough.
And he is upstairs all the timein this house, where I'm at
right now recording this, andhis grandfather is always
(32:24):
playing war movies and so all heever hears is machine guns and
cussing and yelling and war andturmoil and sadness that's going
to affect somebody.
I don't care, you know, youthink I don't know.
Look, we got the old man someheadphones that he can wear and
listen to the TV as loud as hewants to through his headphones.
He refuses to try to wear themor fix them or hook them up or
(32:47):
whatever the hell it is.
Frankly, I am just sick andtired of being Chick Guyver and
the only one who can ever figureshit out.
My son has to suffer because Idon't know what's going on and
no one else does either.
So when he comes to the camperand there is absolutely no media
playing and he's got thispeaceful look on his face and a
smile from ear to ear and he'scuddly and happy and calm, it's
(33:11):
a really good sign that ourdream of being nomadic in a nice
motorhome big enough for thethree of us is probably going to
be good for him.
We're really, really trying.
Thank you for listening to thisepisode.
I hope you'll come back for mynext one to tell you more about
what happened with the schooland hopefully I'm giving you
some sort of ammo to keep inyour pocket for when your kiddo
(33:33):
goes back or for any otherprofessional services that you
may have to deal with, and Ialways love hearing from you
guys.
Please continue to contact mewith your stories and anything
else that you have on your mind.
Again, you can reach me at myemail, which is
contactparentingsevereautism atgmailcom, and you can also drop
(33:57):
me a line on my fan mail at PSAshort for Parenting Severe
Autism psabuzzsproutcom.
And, of course, you can alwaysbuy me a coffee and tell anyone
you meet who says they want tohelp people like you.
Tell them about my GoFundMe,Find that in my Beacons link,
which is beaconsai, and you'llsee it on all my profiles
(34:18):
everywhere.
That's really the best way todonate towards the Safer
Lifestyles, respite communitiesthat we're hoping to build soon,
and if you have any input onthose, any dreams that would
make your life absolute goldwith a respite community, I
would love to hear from you.
Please drop me an email.
Thank you so much for listeningand sharing.
1,000 downloads a month to getmore downloads that's my goal
(34:43):
right now.
So help me out.
Please Hang in there.
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.
A quick update on my bigproject the S.
A.
F.
E.
R.
Lifestyles Respite Communitiesis that I'm trying to quickly
learn how to do, I guess,graphic design or something.
I'm trying to learn how to doanimated video things.
(00:42):
I'm incorporating an animatedbuild - out of our flagship
location and I tried tooutsource that because I simply
don't have the time to dosomething like that.
But I am now making the time todo that because I tried to
outsource it to someone onFiverr and they want around $800
.
And that's typical across theboard.
(01:03):
So I don't.
.
.
.
.
I have more time than money.
So I'm going to work on thatmyself and I have a video that
will be coming out with thataudio that I'm going to just
spread across as much socialmedia as I can and I'm hoping
that you guys will share thisvideo.
When it comes out It'll go onmy YouTube and then I'll have
(01:25):
little pieces of it sprinkledaround on Facebook, instagram
and TikTok and I've started aGoFundMe for it.
So if you wanted to check ortell someone else to check my
link on any of my socials.
They can check my link in bioand be able to donate to the
GoFundMe, which is all set upjust to fund this dream
(01:48):
community of ours.
And if any of my episodes orstories have touched you in any
way, made you laugh, cry or justfeel like you're not as alone
as you thought you were, you canalways support the podcast by
clicking the support link andyou can donate as little as a
dollar and, as you know, I amtrying to save up money to help
(02:08):
other families who are in needand cannot afford some of the
typical things that kids likeours need in regards to food
safety, therapy, etc.
Thank you so much for alwaysliking and sharing my episodes
and my posts on social media.
It is definitely helping me togrow.
I've experienced a little bitof a backslide with exposure,
(02:30):
but I mean it's summer, so Iunderstand.
thatYesterday was the 4th of July
and I was fortunate enough tohave my spouse and my son.
My son actually said he wantedto come and hang out with me for
4th of July.
I had extended the invitationweeks ago, but my spouse said he
wasn't going to come.
I don't know.
I thought it would be awesome.
I mean, yes, it's already knownthat our child does not like
(02:53):
fireworks, but I mean he likesto look at them, he just doesn't
like the sound.
And I'm on the river down thereat the campground and I just
thought it would be amazing, andit truly was.
So I'll wrap up this episodewith a quick story about that.
But I wanted to get back intowhat happened when our son
started to go back to schoolafter they had blamed us for
(03:16):
making him worse.
One thing was that we learnedvery quickly that he could not
handle a full week.
So, because we had alreadypulled him out of school and we
knew that he was abused andmistreated by not only one
teacher, but just everyoneseemed to have their own idea of
how he should act, how heshould be treated, what he
(03:37):
should be made to participate in, and apparently what he
actually wanted was not aconsideration.
So we were very watchful thistime around.
We had gotten a false sense ofsecurity from all the great
experiences he had when he wasyounger in school and we thought
everything was going to be fineuntil he got abused.
(03:57):
So now the whole landscape ofschool has changed for all three
of us.
We start watching his energylevels, his facial expressions,
his behaviors and his echolaliavery closely to see if there are
any even minuscule differencesthat we didn't see when he was
at home with us.
(04:18):
The first thing we learned isthat he was absolutely exhausted
.
It was way too stimulating.
At school they had him doing waytoo much with all the children
and the bells and you know justall the stuff, because they
didn't want him in a specialneeds classroom.
They wanted him put in generalpopulation or whatever you call
it.
You know, and we didn't likethat idea at all, but that was
(04:41):
their program.
We didn't.
I don't know at all, but thatwas their program and we didn't.
I don't know.
Our autism advocate lady washelping us as much as she could
and she kept telling us that ifthe school cannot provide for
his needs, they have tooutsource and they have to pay
the bill for the transportationand for the school that they're
sending him to.
You know the whatever tuitionor any charges that would
(05:04):
normally occur for him to go toa different school district.
That school that he's supposedto go to who's failing and
unable to meet his needs issupposed to have to absorb all
the costs.
So we were just fighting forhis rights the best that we
could and we had IEP meetingsevery couple of weeks and they
were mostly emergency scheduled,so within 24 hours I believe,
(05:25):
and she was always there like abulldog, and it was so helpful
because I we just didn't have it.
You know, trying to run thebusiness and all the stuff that
we were into and trying to keepour son just above the sad and
angry line, anywhere above thatwould be great, you know, and
that's all our responsibility.
We just realized very quicklywithin the first week that a
(05:48):
full week of school was just notgood for him at all.
He didn't look well, he wasvery tired, he was irritable,
his eyes just looked sick andlost and alone and it just
wasn't good.
So we thought, well, maybe heshouldn't jump into a full week,
let's scale back and call thatan accident and let's give him,
(06:10):
let's try four days a week.
So we tried four days a week.
We had to split it, so we didMonday, tuesday, thursday,
friday and that worked outpretty well.
He just needed that break inbetween because it was just way
too stimulating.
Then we started noticing, firstof all, the school didn't want
to use the notebook, thecommunication method.
He just needed that break inbetween because it was just way
too stimulating.
Then we started noticing, firstof all, the school didn't want
to use the notebook, thecommunication method that we had
had in place for all thoseyears that always worked.
(06:33):
And they wanted to complainabout his behavior and him not
paying attention and not doingwhat he's asked and all this
stuff.
And we're like well, did youwrite it down in the notebook?
All they wanted to do was sendme emails, which I will share
some with you in my next episode, because it gets a little bit
out of hand, for sure.
But they're like no, we don'thave time to write in the
(06:53):
notebook, but you have time toemail me.
Do you think I have time tocheck emails?
I don't, you know.
So that was just butting headsfrom the start and they just
didn't want to.
And we kept telling them it'snot a matter of the parents want
you to communicate this waybecause they don't have a
computer or something like that.
It's that that's a behavioralmanagement thing for our son.
(07:16):
He knows what it means when ateacher opens his notebook and
starts writing in it.
I don't understand how you candeny him that satisfaction or
anxiety that he is going to feelwhen he knows you are reporting
his behavior.
He loves a good report just asmuch as he fears a bad report,
and that actually makes him actright.
(07:38):
So, no, we're not using thenotebook and we don't want to
use the notebook.
It's too hard, it's too muchwork.
He requires too much attentionat school.
We can't ask his para to writedown every single time that he
disobeys or that he acts out.
Okay, well, so what are yougoing to do?
(08:00):
You know, they said that theyneeded motivation for him and
they said that they neededconsequences for him.
And they're asking us and allthey want to do is food.
They want to use food formotivation, except there are a
lot of foods that he can't eatand we don't think food is a
(08:20):
healthy method of motivation.
I don't care if it's apples andoranges, we don't want him
motivated by food.
So we told them that.
Well, usually the way it goesis that you have to write in the
notebook and you can writeJacob had a good day, or you can
write Jacob was bad during math.
I mean, it's really not thathard.
We don't need all the details.
(08:41):
It's not even really about that.
It's about him seeing you do it.
He knows where that notebookgoes.
He knows it goes straight tomom and dad and it matters to
him and we like it that way,because nothing else matters to
him.
We would like to keep thenotebook active.
It's a communication devicethat also helps monitor and
(09:03):
improve his behavior.
He will turn himself aroundreally quickly if he doesn't
want to get scolded at home forbeing bad at school and it's not
even you know, there aren'treal consequences.
I mean, what can you do?
You're not gonna.
You know what are you gonna do.
But he doesn't like us beingdisappointed.
His dad is a really good actorat that and he will be very
(09:26):
dramatic with his.
You know.
Oh goodness, jacob, this isterrible.
You know he'll do that kind ofstuff and it really hits home
with our son and we just alittle cooperation, you know,
just write it in the damnnotebook and then, once you
write it in the notebook a fewtimes, if he does not respond,
(09:46):
the next time he starts actingout, not only do you grab the
notebook and a pen, you also saydo you need me to call your dad
?
Because that is the ultimate,and we told them you don't just
pull it out every time.
That's why you use the notebook.
You know it's a progression andif he doesn't straighten up and
fly right, then you threatenhim that you're going to call
(10:08):
his dad and the school.
Just I don't know why, but theyjust couldn't grasp this concept
.
They refused to use thenotebook.
Then they want to startemailing.
Instead of calling dad, theywant to email mom.
And that's not how things work.
I don't have my nose in myemail all the time.
I'm running a salesorganization.
Hello, I'm on the phone, youcan call me or you can just fuck
(10:32):
off, because it just doesn'twork that way.
We never had an agreement.
And then they start wanting totext us.
And I am not a phone person, I'mnot a cell phone person.
When I had a landline phone, Idid calls with people.
My cell phone was my personalphone.
I turned it off and threw it inthe corner and there would be
days where I couldn't even findmy phone.
(10:54):
That was not an effectivemethod of communication and I
didn't understand why they wouldeven do that.
Now, I mean 10 years later, Iget it.
Everyone's got their phone intheir pocket or in their hand or
whatever, but back then wedidn't.
I don't know.
I just thought it was reallyjust look, I gave you a working
(11:14):
system and you don't want towork the system and it's really
not that hard.
That was a huge struggle for us.
Then I found out that when theystarted sending information
home, finally they were notsending information about
therapy.
This all moved very quickly.
I know I said we're in IEPs allthe time.
Well, this was, you know, I'mtalking about the first week to
(11:36):
two weeks of school here.
Before we had IEPs all the time.
We had only had one or twoalready, you know.
But we realized that there wasno report on OT or speech.
So during our IEP we went inthere and we're like, hey,
where's OT and speech and whydon't we get reports on it?
Oh well, we're here, but wewere having trouble getting him
(11:56):
to calm down and we haven'treally been able to give him OT
and speech.
Like I said in my last episode,that is because they want him in
a regular classroom and thenthey want to pluck him out of
that classroom, put him throughthat doorway and into another
doorway.
So now you've just forced mychild to cross two different
thresholds, which for him is anentire sensory processing thing
(12:20):
he's got to process walkingthrough that doorway into the
hallway, then walking down oraround, or however.
You get to the therapy room andcrossing over that threshold to
get into that, and that's athing.
One hallway, one threshold is a40 minute acclimation period.
Now they're asking him to dodouble that and have no period
(12:41):
of acclimation.
They just expect him to goright into therapy like
everything's fine and regular inhis life and he takes 40 to 45
minutes to calm down.
That's just the way it is.
There's nothing anyone can doabout it.
That's what happens.
Now they're blaming us andblaming him for not being able
to use the therapy services thatare offered through school, and
(13:03):
it's because of the way they'vedesigned his schedule.
We have told them a hundredtimes it doesn't work that way.
And then they kept insisting onhaving us do IEP meetings
during school hours and I kepttelling them well, first we were
like, okay, that'll be cute,we'll go there and we'll check
on him and we'll just look athim a little bit and he'll be
(13:24):
doing his own thing and it'll becute to see him in this
environment without knowing thatwe're here.
And then we get there andthey've got him in the room.
They make us wait and they goget him and bring him in the
room.
And I'm like, no, no, we havetold you this before.
You don't go get my kid andbring him through another
threshold.
To be in a room with a bunch ofadults talking about his
(13:44):
problems in front of him, thatis not cool.
He hates it.
He doesn't act right.
You wouldn't like it either andI'm not going to do it.
And I refused to have an IEPmeeting with him in the room and
I don't know why they actedlike.
That was such an asshole move.
I never liked it when I couldhear my mom talking shit about
me in my own house while I wasin my room.
So why would I want my child tobe in the room with every
(14:07):
single educator telling us whythey can't work with him?
They're not there to sing hispraises.
That's not what IEPs are for.
That's for them to attack himand for us to attack them.
That's what happens at IEPmeetings.
So what the hell?
Anyway, I just wasn't going todo it.
They found a way to let us havethe IEP meetings without him
(14:28):
being present.
It was just a mess.
They have absolutely no regardfor a family unit with severe
autism and how it actually works.
I don't know what they expectedJust another layer of stress
and isolation and refusal toeven try to meet us.
Where we're at with that.
At some point we found out thatthey were cutting therapy
altogether because he was notable to tolerate the school
(14:51):
hours.
So because he couldn't go toschool five days a week, I guess
they had to cut the amount oftherapy that they were able to
give him.
And then the time frame thatwas allotted for him to have
therapy happened to be on a daywhen he didn't go to school.
Let's say it was Wednesday, ifthat was allotted for him to
have therapy happened to be on aday when he didn't go to school
.
Let's say it was Wednesday, ifthat was the schedule that we
ended up keeping.
I can't even remember now, butlet's say he stayed on Monday,
(15:14):
tuesday, thursday, friday, andoh, it just so happens that we
cut your therapy allotment andthe therapists are only going to
be in the building onWednesdays, so you actually
won't get any therapy.
Now, that's what ended uphappening.
We also found that he could notride the bus.
There was something going on.
They would not keep that girlaway from our son.
(15:35):
They had extended the length ofthe bus ride and it was
actually faster to just drivehim by car Back.
When he was smaller he used tohave a 45-minute ride to school
and back, but he tolerated itwell because he was, I don't
know.
He would just sleep on the bus.
He had a blanket and a pillow.
It was in his IEP to have suchand he was supposed to be
(15:56):
monitored on the bus.
So someone always watched hisback and they put him, they
tucked him in and they let himsleep and he was a good rider,
you know.
But as he got older we'retalking that he's 15, now 16,
you know, the children arelouder and it just, I don't know
, just wasn't working out.
So we ended up with ouradvocate getting them to figure
(16:16):
out a new mode of transportationfor him to get to school,
because he couldn't ride on thebus for over an hour.
It was ridiculous.
So they ended up having a ladydrive a van, a minivan, to our
house to pick him up and drophim off every day, and that was
awesome.
I guess they had other kids inthe van.
He ended up completelydisrespecting that van driver,
(16:38):
because I know I've mentionedthis in other episodes he will
test you.
He will get right up as closeas he can to you and flap and he
was angry.
He was very angry back then.
He still can be angry, but hewas very angry back then and he
would angrily flap, but he never, ever wanted to touch anybody.
But he got up in her face whenhe got in the van and he flapped
(17:01):
right up in her face and sheflinched and that was it.
I mean, first time they evermet.
He got right up in her face andthat was it.
He knew I got this woman, I canscare her anytime I want and
I'm going to do it all the time.
So he was very abusive to herjust as far as knowing that he
could make her flinch, he couldmake her nervous, and he totally
(17:21):
took advantage of that.
So there was that.
But then we started throwing afit about the lack of attention
to his needs and the lack oftherapy options and we got
somehow referred to a place itwas called Innovative Counseling
, I believe, in Wisconsin, andthat started a whole thing of
(17:42):
therapy.
So we first had to have himtested by a psychologist.
So those meetings are about 45minutes to an hour scheduled on
the calendar.
We were in her office for about10 minutes.
She was like, okay, we're donehere.
She said that he's definitelyautistic and then that set us up
for the assessment withInnovative, which is where I got
(18:03):
those results that I posted awhile back about how severely
autistic he is.
That was the meeting.
It was like a three-hourassessment and it was really
because school dropped the ball.
They didn't want to help himand it was a blessing in
disguise.
So that's just a message ofencouragement to you.
If your school is dropping theball and they don't want to
cooperate, your IEP.
That happens a lot, even thoughIEP is law.
(18:27):
Whatever you put in that IEP isabsolute law.
If they're not doing it, you dohave a course of action, which
is to tell them that they mustsupply you with information and
providers who will do whatthey're supposed to do.
So just keep your head onstraight and try to let them
understand as kindly as possiblethat your child has rights.
(18:48):
Anyway, they said their firstrecommendation was 40 plus hours
a week of therapy.
Yes, that's what they said.
They wanted him to have over 40hours a week of therapy.
Because when I first startedtalking to them.
They knew that I had beenhomeschooling him and they
didn't understand that we weretrying to put him back in school
(19:09):
full time.
And they were just like, well,hey, if he's not going to be in
school, we should totally takethat time and give him therapy.
So I was also like you know,this is going to be in my home
and I don't know, I don't knowif I don't know if I can commit
to that, what am I supposed todo?
(19:30):
You know, I have to work andall this stuff.
So we started a lot lower thanthat but we did increase it
quite a bit.
You know they were willing togive him two shifts per day,
five to six times a week.
So they're talking like eightto 12 hours a day, six days a
week, is what they would havedone for him.
And I mean I thought that wasamazing, just to even it was.
(19:54):
I couldn't fathom it, honestly.
But first of all, to realizethat they really think he needs
that much, I'm like, oh my gosh,you know.
But then also like, wow, that'squite.
That's a lot of dedication thatI'm seeing from them compared
to what I see from the schooland the people who are employed
through them, through thedistrict.
So I was really impressed and Ididn't know what kind of therapy
it was.
I didn't have any idea ofanything.
As you know, I don't knownothing about this stuff, you
(20:16):
know.
So I guess it was ABA, but theywere telling me it was play
therapy and it was play therapy.
That's all they ever did wasplay with flashcards and you
know, just stuff like that.
I didn't see anything wrongwith that, and I have heard that
ABA is thought to be cruel.
It must just be some other veinof ABA that I am not aware of.
(20:36):
I just thought he needed OT andspeech and before we even did
that, they sent me paperwork inthe mail to fill out.
Before we even did that, theysent me paperwork in the mail to
fill out and they had memonitoring every interaction and
how he responded and how weresponded, and all and like for
two weeks, from the time he wokeup until the time he went to
bed, and then anything afterwhen he went to bed, if he got
(20:59):
up and did more stuff oranything.
They wanted a complete recordof every single thing that went
on that day, not just like Icooked sausage and I fed it to
him, but how he was acting aboutit Any sounds, any actions, any
echolalia, any single thingthat he ever did, expressions on
his face, anything.
I diligently wrote all of thisstuff down and they used all of
(21:24):
that information to devise atherapy plan, in addition to his
test results and what theyobserved while we were there.
I couldn't believe it that thatwas even a possibility to
therapy someone that much.
They would come over to thehouse after school.
They would be waiting for himwhen he got home I would have to
give him a snack.
(21:44):
They would therapy him throughdinner and it was just crazy.
So he would get home around3.30 in the afternoon and he
would instantly start therapy,probably until 7, 7.30, I think,
is when that stopped.
And then they would come overon the day that he didn't go to
school.
So on Wednesday they wouldtherapy him in the mornings and
all the way through into theafternoon, and then we ended up
(22:05):
seeing that therapy was actuallymuch more effective than school
.
So we ended up cutting his weekanother day short at school.
So he only went to school, Ithink, three days a week and he
had therapy the other days andafter school on the days that he
did go, it was reallybeneficial.
They were working on stuff thatthe school never would work on.
(22:27):
He loved everything that theydid.
It just sounded like they wereplaying all the time, but it was
really helping him and theywere working on triggers with
him and those ladies they wereso good, they were amazing.
I could never, never dosomething like that.
They were absolutely amazing.
I wish never, never, dosomething like that.
They were absolutely amazing.
I wish we never had to leaveWisconsin because he was on a
(22:48):
really good track for gettinghelp and advancing and maturing
and growing and everything fellapart when we had to leave While
he was at school.
I think the first time he was atschool before we pulled him out
, he was on some kind of like acoffee team where they would
push a cart around and delivercoffee to people and that made
me a little uneasy, but I'm surethey made it safe, you know.
(23:08):
But I was like, damn, my kid ispushing around hot coffee, what
are you doing?
But this time, when he wentback to school, I believe that
they had him working on stockingvending machines as his little
job that he was doing, and thenI learned that the shop class
made him some kind of a thing.
They got together and theysomehow they you know the
(23:30):
teacher communicated the needsthat he had and they made him a
little.
I think it was a toothbrush andtoothpaste organizer or
something and he would stock itwith toothbrushes and toothpaste
.
It was, I really can't rememberand he would stock it with
toothbrushes and toothpaste.
It was.
I really can't remember, but itwas really super cute and
touching that the shop classmade that specially for him.
But school was super hard.
(23:52):
It never got easier withanything.
So in my next episode I willtell you about the adjustments
that were made by the school inthe name of helping our son and
why I didn't think that theywere great, and I'll also share
with you a string of emails andthe tone and everything that had
gone on there.
I kind of got in trouble, Iguess I got hated on by the
(24:13):
school because of ourcommunications and I started
getting accused of being aterrible person.
So we'll share all of that inthe next episode.
That'll be really fun.
And yesterday was the fourth.
So my son said to his dad lastweek that he wanted to come see
mommy and watch the fireworksand my spouse had said that they
(24:34):
weren't going to come becausehe didn't think Jacob would go.
So I was pleasantly surprisedthat Jacob told his dad he was
wrong and they wanted to comeout and hang out with me.
So he did get to see some ofthe fireworks and they were
across the river and very faraway and so the sound was
muffled and delayed and it was,I think, a little confusing for
(24:54):
him.
But we could see a line allalong the river of a lot of
different people doing fireworksand it was really pretty and he
really enjoyed it, at leastlooking, and he wore his
headphones and everything.
But we were about a third ofthe way through the fireworks
and he was like I'm done, can Igo inside?
So his dad went and put him inbed and I thought it was super
cute that he was out there inthe first place.
(25:14):
You know I can't expect him tosit out there for 40 minutes and
finish the whole line offireworks, but that was really
cool that he tried and that hedidn't freak out.
But then, after the fireworkswere over from the city, the
people in the campground startedlighting off their fireworks
and of course those are superloud because they're right there
next to the camper.
You know, my kid is 24.
This has been going on all hislife and I'm just I'm to a point
(25:38):
with this stuff that it's justlike look man, I, you, you got
to take some responsibility foryourself and how you react to
stuff you can't seriously, it'snot new.
I go in there and he's likefreaking out.
He's holding his headphones andriding on that danger, that
high that I told you he likes toteeter on the edge of disaster.
(25:59):
I think that he actually buildsthis danger up in his head and
he likes that feeling of beingnervous and on the edge of a
meltdown.
He keeps looking to us forguidance and all we have to do
is say the wrong thing or theright thing in the wrong tone
and that'll set him off.
And frankly, I'm sick of it.
He's 24.
And I mean I'm just sick of it.
(26:20):
He's not five.
I don't care how long he wantsto act like he's five, he's not
fucking five.
So he starts freaking out andyou know, oh, it's dangerous,
it's dangerous.
And and his dad, you know, wasbabying him and he kept on the
way.
We've always kept on.
Oh, it'll be okay, it's just alittle fireworks.
Yep, it's just fireworks,that's right, it's just
(26:40):
fireworks.
So when his dad was donebabying him and he looked to me
for more and tried to tell meabout being scared and being
safe and everything, I justleveled with him and I said look
, you know that you're safe.
These are fireworks.
They do them every year.
You are 24 years old.
They have done fireworks everyyear.
(27:00):
Wherever we've been, you alwayshear fireworks.
So you know that you're safe.
You're still safe After everysingle year.
Here you are, you're alive andyou're well and you're safe, and
the fireworks are not coming inhere.
The fireworks are outside.
You are inside, you haveheadphones, you have a pillow,
you have a blanket.
Get it together, go hide underyour blanket and pillow if you
(27:22):
want to.
But you're almost 25 years old,you need to get used to this.
It's just fireworks.
And he instantly was like ohokay, you know, I swear to God,
it's just as much as we playinto it.
He will keep milking it.
You know, and I'm just done.
So I'm running experiments nowwhere it looks like his dad
(27:42):
still wants to baby him, andthat's totally fine.
I'm not going to fight thatbattle, but I'm going to do
things my way, as I always do,and when he comes to me for
babying and comfort at 24 yearsold and up, I'm not going to do
it.
You know, there are times whenhe needs comfort.
Just the other day hisgrandmother was over here again
and I told his dad watch hisbehavior, because every time she
(28:06):
comes over he ends up hurtinghimself within two to three days
, I think.
And then on day four they cometo see me and he's got bite
marks on his arm and he hadscratched his face the night
before and he was being a totalpsycho, according to his dad,
the day before that.
And again I reminded him yourmom was there, which was an
awfully funny thing, because wehad to go get our Jeep from the
(28:27):
shop and we needed a ride.
Tweedledum was supposed to takeus he always takes us because
it's his truck and just out ofthe blue they had this instant
plan when we learned that it wastime to go pick it up.
And he says nope, tweedledee'sgoing to take you.
Okay, well, that's weird.
Tweedledee almost never drives.
Why would you not want to driveyour own truck?
So, whatever, okay, fine, so weleave.
(28:49):
We're gone for what they driveto the campground to pick me up
and then we drive to the shop.
So we're gone like 15 to 20minutes the whole trip and we
come back to the house buthere's the grandmother my
spouse's mom, and I'm like what?
Jake was in bed when they cameto pick me up.
(29:09):
And then we get home, he's outof bed during his normal bedtime
during the day and hisgrandmother's here.
And I just thought that wasawfully funny that Tweedledum
was aware already that he wasnot going to drive, only
Tweedledee was going to drive us.
And then, lo and behold, what asurprise.
Jake's out of bed and thegrandmother's here sitting with
him.
I still think that's reallysuspicious, but I can't get
(29:31):
anyone else to agree.
So I guess I'm more of aconspiracy theorist than I
thought.
Anyhow, it did happen.
I swear to God, this is whathappens.
He gets sad, he gets lonely, hegets to knowing that his
grandmother doesn't love him theway that she used to, because
that's what she's showing himand he doesn't have a way to
voice it.
So he starts puncturing himselfand scratching his head and
(29:53):
acting out.
I keep trying to remind myspouse that behaviors are
communication.
It's not just like I feel likebeing an asshole.
He's trying to tell ussomething.
We have to try to listen orlook around.
And it's hard when you're in itand you feel like man, I'm
having a good day, I've been upfor two hours and I'm having a
great day, and then here comesyour kid just ruining your life.
(30:17):
It's hard when you're rightthere and you may not be able to
think of oh, what is he tryingto communicate to me?
This is not just a behavior.
This is his way of talking,this is his way of being verbal.
What is it?
What is it?
What is it?
And usually you just feelassaulted and you feel like you
have to defend yourself and yourpeace, and it's different.
(30:38):
But if we can continue to tryto look at these aggressive
behaviors as communication, Ithink that we might start to see
some sort of emotional patternof hurt or shame or something
that he's feeling, that he can'tidentify and that we have to
identify.
(30:58):
I told my spouse the other dayhey, I think that she either
needs to stop coming overaltogether or she needs to start
coming over more.
That's the only way, becausethe way that she stops in, you
know, with months in between avisit, and then she doesn't make
any promises to see him againand the visits don't go the way
he thinks they might in hisheart and mind.
(31:19):
It is causing him a lot ofdamage and I don't think it's
fair.
So we need to put our foot down.
You either need to tell hercome over more often and get him
used to seeing you and spendingtime with you, or just stop
fucking coming over, becausewhen you do it this way, it's
clearly only about you, it's notabout him.
If you were coming here to seehim, to make him happy, you
(31:43):
would do it more often, becausethat's what he needs.
He doesn't need a fly-by-nightvisitor.
He needs someone who loves himand drops by just to show him
how much they love him.
The way that you're doing it isnot right.
So, anyway, this is somethingI'm fighting for right now, and
while he was at the camper withus yesterday and this morning, I
(32:04):
saw great signs of peace withhim.
He seemed very happy andcontent with us.
I don't have a TV in there, Idon't listen to TV, I just want
silence.
I listen to the birds andthat's enough.
And he is upstairs all the timein this house, where I'm at
right now recording this, andhis grandfather is always
(32:24):
playing war movies and so all heever hears is machine guns and
cussing and yelling and war andturmoil and sadness that's going
to affect somebody.
I don't care, you know, youthink I don't know.
Look, we got the old man someheadphones that he can wear and
listen to the TV as loud as hewants to through his headphones.
He refuses to try to wear themor fix them or hook them up or
(32:47):
whatever the hell it is.
Frankly, I am just sick andtired of being Chick Guyver and
the only one who can ever figureshit out.
My son has to suffer because Idon't know what's going on and
no one else does either.
So when he comes to the camperand there is absolutely no media
playing and he's got thispeaceful look on his face and a
smile from ear to ear and he'scuddly and happy and calm, it's
(33:11):
a really good sign that ourdream of being nomadic in a nice
motorhome big enough for thethree of us is probably going to
be good for him.
We're really, really trying.
Thank you for listening to thisepisode.
I hope you'll come back for mynext one to tell you more about
what happened with the schooland hopefully I'm giving you
some sort of ammo to keep inyour pocket for when your kiddo
(33:33):
goes back or for any otherprofessional services that you
may have to deal with, and Ialways love hearing from you
guys.
Please continue to contact mewith your stories and anything
else that you have on your mind.
Again, you can reach me at myemail, which is
contactparentingsevereautism atgmailcom, and you can also drop
(33:57):
me a line on my fan mail at PSAshort for Parenting Severe
Autism psabuzzsproutcom.
And, of course, you can alwaysbuy me a coffee and tell anyone
you meet who says they want tohelp people like you.
Tell them about my GoFundMe,Find that in my Beacons link,
which is beaconsai, and you'llsee it on all my profiles
(34:18):
everywhere.
That's really the best way todonate towards the Safer
Lifestyles, respite communitiesthat we're hoping to build soon,
and if you have any input onthose, any dreams that would
make your life absolute goldwith a respite community, I
would love to hear from you.
Please drop me an email.
Thank you so much for listeningand sharing.
1,000 downloads a month to getmore downloads that's my goal
(34:43):
right now.
So help me out.
Please Hang in there.
You're a superhero.
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