October 30, 2024 • 24 mins
Ever wondered how a simple water balloon fight could turn into an unforgettable lesson on resilience and understanding? Join me in this heartwarming episode of the Parenting Severe Autism podcast where I share some of our family's most cherished memories, like Jacob's adventurous spirit during our quirky door-knocking sales days, his creative costume designs, and the pride we all felt when he caught his first fish. These stories not only entertain but also shed light on the unique joys and trials of raising a child with severe autism, emphasizing the importance of connection with those who share similar experiences.
Transitioning to a new environment brings its own set of challenges, and our move to Jefferson, Wisconsin was no exception. I open up about the importance of maintaining communication with educators through tools like a daily feedback notebook and how it played a crucial role in understanding Jacob's school days. This episode also touches on the significance of involving children in 'adult' discussions about changes, such as moving homes, to better prepare them for life's transitions. By sharing these experiences, I aim to foster a sense of community and offer insights into creating a supportive and understanding environment for families navigating severe autism.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (00:17):
Hello and welcome to the Parenting Severe
Autism podcast.
I am your Sh.
, .
I'm so happy that you're herewith me today.
While I've been thinking aboutall of the events that took
place in the house we moved toonce we left Northern Illinois,
I've also remembered a coupleodd things that I may have left
out from our days in NorthernIllinois, so I wanted to share
(00:39):
those before we move on to theheavier stuff.
I remember that we hadn't livedin our townhouse very long and
we thought it might be a goodidea to start having fun as a
family out in the yard.
It was summer.
It had to have been a holiday,because the only time we'd be
home as a family is during aforced holiday.
It was hot outside.
(00:59):
We went and bought some waterballoons and we thought we'd
have a family water balloon war.
It went well for the firstseveral balloons.
Everything was going okay, andit was because the balloons were
just hitting the ground.
We weren't quite getting themfar enough to break on a person.
Finally, daddy got one to stick.
(01:20):
He and Jacob were a couple armslengths away from each other
and he tossed a red waterballoon at Jacob.
I remember specifically.
So it was an instantprogression.
He made eye contact with Dad.
Dad throws the water balloon athim with a smile.
It hits him, bounces off.
He looks down in horror thatsomething hit him and that his
(01:42):
dad did it.
He looks back up at us andfalls on his ass hard and he let
out an instant blood curdlingscream.
It was so embarrassing.
There were people outside, wewere in a neighborhood, there
was no one in our yard, butthere were other townhomes all
(02:04):
around this place, so manypeople out in the street and in
their own yards and everything.
And he's just screaming at thetop of his lungs and it was the
longest scream I have ever heardin my life.
And we had plenty of time tolook at him with wide eyes, look
(02:25):
at each other with wide eyesand take three large steps back
and he was still screaming.
It was horrible.
His dad still feels terribleabout that.
We both do.
Anytime we think back about it,it's just so sad.
It was supposed to be fun andit was so sad and it was over.
I mean there's nothing else youcan do after that.
(02:47):
So another thing I thought aboutwas when we would go door
knocking because we were insales Sometimes.
We would go as a family andJacob would be with both of us,
or sometimes just with his dad.
We would stand at the door andknock or ring the doorbell.
Jacob would just walk right in,his dad would ring the doorbell
and then Jake was like, yeah,screw this.
Like he just thinks he belongseverywhere and he would just
(03:11):
open people's doors and walkright past him.
It was quite embarrassing, butI mean, what are you going to do
?
You know that's, that's Jacob.
There are a lot of things thatJacob did that would just
horrify me, and his dad wasalways like, yeah, well, okay,
you know.
Another memory I have is whenthe nephew came over to stay
with us.
He wanted to go fishing.
We had this bike path and therewas a river behind our place
(03:33):
and then the bridge from thepath would go over that same
little river.
My spouse was out at work, Ihad the boys and we had fishing
poles.
I just grabbed some bread,because that's how I used to
fish when I would go to camp.
We would just make littletriangles out of smashed bread
and put it on the hook and gofish.
So I was like, well, let's justgo do that.
We went down to the bridge andI loaded up their hooks with
(03:54):
this triangle of bread expertlycrafted.
We dropped both of their linesin the water and within 30
seconds, jacob caught a fish.
He had never caught a fishbefore.
It was I don't know.
It looked like a little sunfishactually, which that's what I
used to catch on bread at camp,so that would make sense.
It was probably like three orfour inches long.
(04:16):
It was a tiny little guy and itwas so cool.
Jacob didn't know what to dowith it, but we pulled up the
fish and I showed it to him andI think he got to touch it and
we threw it back in the waterand that was pretty neat because
he got to catch his very firstfish with me.
One of my other favorite thingsabout his persona at that time
was that he would make his owncostumes.
(04:36):
I know I mentioned that before,but it was super cool,
especially as time has gone onand I've learned more about how
not creative they expect him tobe, having severe autism, and I
thought that was extremelycreative to mix and match his
costumes and steal my sunglassesto put him with certain
costumes, but not every costume.
(04:57):
I thought that was amazing Oneof the interactions with people
outside of our family thatsticks out to me from those
years is we cooked for a familywho had an older boy I don't
know.
I think Jake was like 11.
And this other boy was probably14 at the time.
I believe they were really nicepeople.
I believe he was on the severeside of autism as well, and the
(05:22):
mom just thought, hey, theywould get along great together.
I want you to bring your sonwhen you cook for us.
Okay, well, that's really nice.
So we did.
They wanted us to all hang outas families.
It was just work.
At the time I just didn't evenrealize how rare and special a
relationship with another autismfamily could be.
(05:43):
As I said, we didn't know anyother autism than the one that
we live with, that our son dealswith.
So we didn't know anythingabout the spectrum or the
different ends and the differentseverities and whether he was
severe.
We didn't know anything.
So we just didn't realize thatit would be hard to even want to
form connections with others,and that was probably one of the
(06:05):
coolest things that we did.
The thing about that visit isthat we took our son over there,
we cooked the meal, we did allthe things and our job takes two
and a half to three hours to do.
We went to check on the kidsand they had bonded so quickly.
They were quiet the whole time,which is why we thought we
should check on them.
(06:26):
We found them in the movie roomsitting on the couch holding
hands watching a movie,completely at peace.
The expressions on their faceswere so calm and happy.
It was quite a marvel.
Actually.
There's only been a coupleother times when I've seen him
that content and I think he'sprobably been stoned each time.
(06:48):
It was a really really neatthing to see.
Also very rare to have thatopportunity for him to bond with
somebody, so that was reallyreally memorable for us.
The last thing I thought aboutis probably the last thing that
happened at the location welived at in Northern Illinois.
We got him that tricycle I toldyou about.
(07:10):
It's huge.
We got that in October becausewe dressed up as the Wizard of
Oz characters and we taught himhow to ride that bike.
Either in the same day or thesame week he was riding that
bike and he had been riding it acouple times already up and
down the driveway.
We were just cheering him onand he had gotten about I don't
(07:34):
know five or six leg pumps inaway from us, all of a sudden
his tire went off the drivewayinto the grass and he just fell
over the whole thing, just fellover.
He fell actually into some ofthe bushes that were growing and
they had lost their leavesalready; it was fall, you know,
and I was horrified.
I thought, great, this is gonnasuck.
(07:55):
But we treated it just like youtreat any other kid who falls
and you know they're not reallyhurt and their reaction is going
to depend on how you react toit.
The way that I grew up, wewould always just laugh at
whoever fell, you know you wouldsay oops, a daisy or something
and then just kind of laugh itoff and hope that the child
(08:17):
would just laugh it off as welland not go the other way and
have a screaming tantrum.
So we just kind of giggled andlaughed it off.
We were like, oh, fall down, goboom.
You know everything's okay andhe was fine.
He didn't even really look tous for the cue on how he should
react and he does all the timenow he can't do one thing
(08:39):
without looking at us for ourinput before he makes the
decision to do something.
It's so terrible.
But back then he didn't evencare.
I thought he would.
He just sat there on his bikein the bushes.
Everything was fine, it didn't.
It didn't hurt him at all.
Of course it was a big asstrike, so I think that was why
it was so safe for him.
But it was great.
(08:59):
I thought that was going to bea nightmare, but it was totally
fine.
And then we ended up moving toJefferson, so it was the
Jefferson area of Wisconsin.
The school he went to was inJefferson, wisconsin.
We lived out in anunincorporated part of a
different town but it wasn't far.
I was naive.
I didn't realize back then thatanything we were going through
(09:20):
with this new school was goingto be the new standard, the new
normal.
I didn't realize that this wasgoing to be a thing.
He never had problems in school.
Everybody loved him, everybodytook care of him, every day was
a happy day at school and we hadno reason to believe that that
would change, because he's thesame kid and he has the same
(09:43):
effect on everybody.
Everybody loves this child.
He's adorable and he's a littlemischievous, but he's not good
at it, so that's even cuter.
He just he's a great kid andthe educators always loved him,
so we just didn't think anythingbad was going to happen.
A lot of the stuff from backthen is in deep storage because
(10:03):
of the downsizing that we did,but there's really not much,
because we were there for oneschool year and that's it.
One thing I quickly realized isthat Jacob needs to be preceded
by an instruction booklet.
It wasn't something I everthought about.
We thought that we could justsay this is what he is and is
not allowed, but as he getsolder and the world changes and
(10:26):
more things become available andmore things become mainstream
that we don't really want in hislife, more restrictions get put
on everything and more care hasto be taken, so he does come
with an instruction booklet now.
The biggest thing with thatschool, though, was that there
was no notebook communication.
We would press for it becauseit was a ritual, as I mentioned
(10:47):
many episodes ago.
He would always come home andwe would check his.
Oh my gosh, I don't know if Ieven told you guys about this.
If I have, it'll be overquickly, so just bear with me,
but he used to always come homeand we would check his notebook
immediately to see how he did,just so we had something to
congratulate him on and also wewanted to know how his day was.
(11:09):
But we just liked making himhappy and getting him excited
and rewarding him with love andjoy for a hard day's work.
One day he came home from schooland we were in the living room
and we wanted to check hisnotebook, but it took him a long
time to get off the bus firstof all, and then he came in the
door and we were like where isyour notebook?
(11:31):
And he said just one, minas.
And he scratched out theteacher's words that he
misbehaved and he wrote himselfin there Jacob had a good day,
or something like that.
It was hilarious.
We were so proud of him forjust being that much of a badass
(11:52):
.
Already you know whatinitiative you know.
So anyway, that notebook wasused every day and all of a
sudden we're at this new school.
We told him about the notebook,we sent the notebook, we
introduced ourselves at theparent-teacher opening day.
We talked at length with thestaff of educators there that
(12:13):
were going to work with him.
We gave all of the information.
Everything was would havenothing to congratulate him on
and he didn't really have thewords to say anything about
anything.
It was like it was none of ourbusiness is how it felt.
(12:35):
So we started to press themabout the notebook.
Why don't we have a notebook?
We would really like to knowhow his day is going.
His day is going fine, is whatthey would say.
We would say well, we have anotebook and he relies on it and
we think that he seems a littlesad and maybe feels neglected
because he's not getting thepositive feedback from school
(12:58):
and we're also not finding outanything else that goes on.
We like to know how he handleshis day and we would like to
have the notebook filled outevery day.
And they just wouldn't do it.
I thought that was a finereason and a fine argument for
why we wanted to have thecommunication coming and going.
I think they said something tous like you don't say anything
(13:21):
to us in the notebook, you know.
So we started having to writestupid stuff to them in the
notebook, just so they would beour pen pals and write back in
the notebook.
And it was dumb.
You know he just started actingout.
I don't remember other than thefinger stretching, and you know
these little neurotic thingsthat started coming up.
(13:42):
There was something about himand about the way they were
acting that just put me into apanic and I started frantically
researching and searching theinternet for, at the time, spy
cams.
There was nothing like what'savailable now.
The only things I could findwas like a nanny cam inside of a
(14:03):
teddy bear, or a button, a pin,you know, like a smiley face
pin that you can put on hisclothing with a little camera on
it.
But obviously there are severalthings wrong with that, so that
wouldn't work, and thesecameras were hundreds and
hundreds of dollars.
I just couldn't find anythingthat would be believable.
You don't want to put it on hisclothing for obvious reasons.
(14:25):
You don't want to put it on hisbackpack if they're not going
to have the backpack with anearshot.
I didn't necessarily need tosee everything that was going on
.
I just felt like maybe I shouldsee it, maybe I needed to hear
the environment that he was in.
Something was wrong and I wasso depressed about it.
I searched frantically everyday trying to find a solution to
(14:48):
put a monitoring device on himwhere I could hear and or see
what's going on in the classroom.
So something was obviously notright.
I just couldn't prove it.
I don't know what would havebecome of it all.
I'm glad that we moved awayfrom there, but that did start
the downfall of the happy Jacoband everything started to get
(15:12):
stranger and stranger after this.
I am really glad we moved, but Idid end up typing up like a
care sheet, a care booklet forhim and, in case you need to do
something like that, this isvery thorough for us because we
have noticed how he reacts toall of the foods that I've said
we leave out of our diet now.
(15:32):
So the instruction booklet ishow to talk to him, what names
he likes to be called, how togreet him, how to interact with
him, specific words and phrasesthat trigger happiness with him
and trigger cooperation.
There is a certain way to talkto him.
His dad has been doing it eversince I met them, so it's what
(15:55):
he responds to.
It's our opinion that maybeeveryone should just be aware of
the easiest way to deal withhim and to interact with him, so
that you can save yourself time, save yourself hassle, save him
any kind of negativity and justbe able to function a lot
better.
It's much more efficient whenyou have the 411 on how to deal
(16:15):
with the entire individual.
The more complicated he hasbecome as he's gotten older, the
more valuable I realize thatthat information is.
I'm talking about allowed foods, how to diffuse him, how to
motivate him.
These are all things I took forgranted, I guess I just didn't
think it was that hard.
I know nothing about it, I justfeel him out.
(16:37):
I know what works, I know whatdoesn't work.
I know if I want to piss themoff.
I know how you know.
I like to have that stuff in abooklet.
It's not long.
I ask them to read it.
It's just two pages, front andback, typed up.
It's not that big, but it'svery specific, easy to follow,
and they didn't want to do it.
(16:58):
That is what I didn't realizewas going to become a thing.
It became the new normal andit's just not fair.
It's not fair to him, it's notfair to us as his parents who
have to live with him, and it'snot fair to the other kids.
It's not fair to the specialclassroom, it's not fair to the
other classrooms.
They wanted to, I guess,integrate.
(17:19):
They wanted to integrate himinto regular classrooms.
I think that started at theJefferson one.
That might have been part ofthe problem I wish I remembered.
I just didn't.
I don't know.
It was a short thing.
There was a lot going on and wewere just trying to get through
it and keep everyone alive.
So my memory is very foggy onthat one, but at least we were
(17:40):
there for a short time.
In my next episode and everyepisode following, I'm going to
start detailing the next sevenyears of our severe autism
lifestyle.
I'm going to do my best toinclude something good and happy
, you know, some kind of goodnews, some kind of funny story
in every episode, and it'sbecause this shit gets really
(18:03):
heavy.
It's heavy for me.
It might not be as heavy tolisten to as it is to talk about
, but it's going to be rough andit's everything that became the
beginning of the reason that Ifelt called to do this podcast.
Everything coming up is thestart of that.
The worst of it is what got medoing it, and that was within
(18:27):
the last three years, I think.
But we're going to talk aboutthe years between 12 years old
to 19 years old.
So it's going to run the gamutthere and this shit is heavy.
So I do want to tell you Ithought that we had mornings
figured out, but now he's goneand thrown me another curveball
(18:47):
here.
Every time we think that we aresafe and able to have a calm
time of it.
He came down the other day.
It was the day after I recordedmy last episode.
He comes downstairs first thingin the morning, raging, just
super upset, not hearing anyreason, not going with the
program.
He knows how mornings have togo for him to have a good
(19:09):
morning.
He's got to let his medicinetake effect.
There are certain steps thathave to be taken.
He knows what they are and onthe days that he chooses not to
allow those steps to happen inthe order and at the length
they're supposed to happen,everything goes to hell.
So he's doing that on thisparticular morning and he kept
yelling how he doesn't feel good, but he wouldn't let us help
(19:31):
him and he just wanted to rageand he just wanted to yell at
everybody and he kept stompingaround and punching himself in
the head, just all kinds ofstuff.
The final thing that he did hewas put in his bed.
He was told to relax, he wasthreatened with the no pizza,
all that stuff, and he didn'tcare.
He got back up out of bed alittle while later, sweating,
(19:54):
heavy, breathing, all of thethings because of all the
flapping, and he puts his robeon and comes storming down into
our area.
The robe is open, he's justflying around and starts raging
like almost like seething, youknow the breathing through his
teeth and all that.
He starts saying how he doesn'tfeel good and instead of the
(20:16):
whiny he usually says I don'tfeel good.
But instead he was like I don'tfeel good and he starts taking
large, giant, stompy stepstowards his dad and there's only
room for him to take like threesteps in this room, not a lot
of room.
His dad is sitting next to me onthe love seat with his eyes
(20:36):
closed, trying to cope withwhat's going on, and a lot of
times if we close our eyes ordon't look at him, it kind of
diffuses him.
So he was doing that.
I didn't know, I was lookingelsewhere, because I was also
trying to do that and all of asudden I hear Jake, what the
(20:57):
fuck?
And I look and he, as he was,stomping, stomp, striding
towards his dad.
He took his entire package outof his underwear and fluffed it
over the top and left hisunderwear tight across his legs
and he's got his whole, hiswhole thing there.
Everything is just hanging outover his waistband and he's
(21:20):
stomping towards his dad andthat stuff is right at face
level when we're sitting andhe's standing and so, yeah, and
then his dad says later what isit with him and sleeping people?
If he would have thought I wasa sleeper, if I didn't open my
eyes, what was he going to do?
Because of the method I toldyou about, that was sleeping on
(21:42):
the couch.
He knew his dad wasn't sleeping, obviously because we had been
fighting with him.
But, yeah, that's what happened.
So mornings are not reliable.
Again, it only lasted a littlewhile.
We're right back to thecraziness.
What are your mornings like?
If you ever have time and youwant to tell me about your
mornings or your evenings or anyspecific time of day that just
(22:06):
is great or terrible on aregular basis, is there a
pattern?
Anything you want to share withme?
Please feel free.
If you want me to share it withothers on this podcast, let me
know in an email.
Otherwise I'll just keep itbetween us.
So you can email me atcontactparentingsevereautism at
(22:28):
gmailcom.
You can also send me a text, Ibelieve through my Buzzsprout
website, which hosts this wholepodcast.
So that is psabuzzsproutcom,and I think if you leave me a
note, even on Facebook or on Buyme a coffee, you can leave me
notes all over the place.
I eventually get thenotification.
(22:50):
But yeah, I'd love to hearanything you want to share.
Feel free, I'm here for you.
Overall, I guess the lesson herewith the whole moving thing
that I was talking about beforeis that, even though I was
raised that that kind of stuffis adult stuff that I don't need
to worry about.
That's how I viewed it and Ithink that's how my spouse
(23:11):
viewed it too.
You know, you tell your kidthat you're going to move, you
let them know that they're goingto lose all their friends and
find a new place and all thatstuff.
You talk about it, but youapproach it differently with a
kid who's not like Jacob.
But the lesson here, I think,is that adult stuff like that is
autism stuff too.
(23:31):
In my opinion, it's better toinclude him on a conversation,
because it's adult stuff, Iguess, and you're always taking.
He may not even understand, butI feel like I'm.
You know, you make a mistakewhen you figure it's just adult
stuff and you don't have toconsult the child with all of
his particulars.
You have to consult him andprepare him in a different way
(23:53):
than you would prepare aneurotypical child.
I guess that's the lesson.
Just remember that adult stuffis autism stuff too.
It has a huge effect.
You hang in there, you're asuperhero.
Hello and welcome to the Parenting Severe
Autism podcast.
I am your Sh.
, .
I'm so happy that you're herewith me today.
While I've been thinking aboutall of the events that took
place in the house we moved toonce we left Northern Illinois,
I've also remembered a coupleodd things that I may have left
out from our days in NorthernIllinois, so I wanted to share
(00:39):
those before we move on to theheavier stuff.
I remember that we hadn't livedin our townhouse very long and
we thought it might be a goodidea to start having fun as a
family out in the yard.
It was summer.
It had to have been a holiday,because the only time we'd be
home as a family is during aforced holiday.
It was hot outside.
(00:59):
We went and bought some waterballoons and we thought we'd
have a family water balloon war.
It went well for the firstseveral balloons.
Everything was going okay, andit was because the balloons were
just hitting the ground.
We weren't quite getting themfar enough to break on a person.
Finally, daddy got one to stick.
(01:20):
He and Jacob were a couple armslengths away from each other
and he tossed a red waterballoon at Jacob.
I remember specifically.
So it was an instantprogression.
He made eye contact with Dad.
Dad throws the water balloon athim with a smile.
It hits him, bounces off.
He looks down in horror thatsomething hit him and that his
(01:42):
dad did it.
He looks back up at us andfalls on his ass hard and he let
out an instant blood curdlingscream.
It was so embarrassing.
There were people outside, wewere in a neighborhood, there
was no one in our yard, butthere were other townhomes all
(02:04):
around this place, so manypeople out in the street and in
their own yards and everything.
And he's just screaming at thetop of his lungs and it was the
longest scream I have ever heardin my life.
And we had plenty of time tolook at him with wide eyes, look
(02:25):
at each other with wide eyesand take three large steps back
and he was still screaming.
It was horrible.
His dad still feels terribleabout that.
We both do.
Anytime we think back about it,it's just so sad.
It was supposed to be fun andit was so sad and it was over.
I mean there's nothing else youcan do after that.
(02:47):
So another thing I thought aboutwas when we would go door
knocking because we were insales Sometimes.
We would go as a family andJacob would be with both of us,
or sometimes just with his dad.
We would stand at the door andknock or ring the doorbell.
Jacob would just walk right in,his dad would ring the doorbell
and then Jake was like, yeah,screw this.
Like he just thinks he belongseverywhere and he would just
(03:11):
open people's doors and walkright past him.
It was quite embarrassing, butI mean, what are you going to do
?
You know that's, that's Jacob.
There are a lot of things thatJacob did that would just
horrify me, and his dad wasalways like, yeah, well, okay,
you know.
Another memory I have is whenthe nephew came over to stay
with us.
He wanted to go fishing.
We had this bike path and therewas a river behind our place
(03:33):
and then the bridge from thepath would go over that same
little river.
My spouse was out at work, Ihad the boys and we had fishing
poles.
I just grabbed some bread,because that's how I used to
fish when I would go to camp.
We would just make littletriangles out of smashed bread
and put it on the hook and gofish.
So I was like, well, let's justgo do that.
We went down to the bridge andI loaded up their hooks with
(03:54):
this triangle of bread expertlycrafted.
We dropped both of their linesin the water and within 30
seconds, jacob caught a fish.
He had never caught a fishbefore.
It was I don't know.
It looked like a little sunfishactually, which that's what I
used to catch on bread at camp,so that would make sense.
It was probably like three orfour inches long.
(04:16):
It was a tiny little guy and itwas so cool.
Jacob didn't know what to dowith it, but we pulled up the
fish and I showed it to him andI think he got to touch it and
we threw it back in the waterand that was pretty neat because
he got to catch his very firstfish with me.
One of my other favorite thingsabout his persona at that time
was that he would make his owncostumes.
(04:36):
I know I mentioned that before,but it was super cool,
especially as time has gone onand I've learned more about how
not creative they expect him tobe, having severe autism, and I
thought that was extremelycreative to mix and match his
costumes and steal my sunglassesto put him with certain
costumes, but not every costume.
(04:57):
I thought that was amazing Oneof the interactions with people
outside of our family thatsticks out to me from those
years is we cooked for a familywho had an older boy I don't
know.
I think Jake was like 11.
And this other boy was probably14 at the time.
I believe they were really nicepeople.
I believe he was on the severeside of autism as well, and the
(05:22):
mom just thought, hey, theywould get along great together.
I want you to bring your sonwhen you cook for us.
Okay, well, that's really nice.
So we did.
They wanted us to all hang outas families.
It was just work.
At the time I just didn't evenrealize how rare and special a
relationship with another autismfamily could be.
(05:43):
As I said, we didn't know anyother autism than the one that
we live with, that our son dealswith.
So we didn't know anythingabout the spectrum or the
different ends and the differentseverities and whether he was
severe.
We didn't know anything.
So we just didn't realize thatit would be hard to even want to
form connections with others,and that was probably one of the
(06:05):
coolest things that we did.
The thing about that visit isthat we took our son over there,
we cooked the meal, we did allthe things and our job takes two
and a half to three hours to do.
We went to check on the kidsand they had bonded so quickly.
They were quiet the whole time,which is why we thought we
should check on them.
(06:26):
We found them in the movie roomsitting on the couch holding
hands watching a movie,completely at peace.
The expressions on their faceswere so calm and happy.
It was quite a marvel.
Actually.
There's only been a coupleother times when I've seen him
that content and I think he'sprobably been stoned each time.
(06:48):
It was a really really neatthing to see.
Also very rare to have thatopportunity for him to bond with
somebody, so that was reallyreally memorable for us.
The last thing I thought aboutis probably the last thing that
happened at the location welived at in Northern Illinois.
We got him that tricycle I toldyou about.
(07:10):
It's huge.
We got that in October becausewe dressed up as the Wizard of
Oz characters and we taught himhow to ride that bike.
Either in the same day or thesame week he was riding that
bike and he had been riding it acouple times already up and
down the driveway.
We were just cheering him onand he had gotten about I don't
(07:34):
know five or six leg pumps inaway from us, all of a sudden
his tire went off the drivewayinto the grass and he just fell
over the whole thing, just fellover.
He fell actually into some ofthe bushes that were growing and
they had lost their leavesalready; it was fall, you know,
and I was horrified.
I thought, great, this is gonnasuck.
(07:55):
But we treated it just like youtreat any other kid who falls
and you know they're not reallyhurt and their reaction is going
to depend on how you react toit.
The way that I grew up, wewould always just laugh at
whoever fell, you know you wouldsay oops, a daisy or something
and then just kind of laugh itoff and hope that the child
(08:17):
would just laugh it off as welland not go the other way and
have a screaming tantrum.
So we just kind of giggled andlaughed it off.
We were like, oh, fall down, goboom.
You know everything's okay andhe was fine.
He didn't even really look tous for the cue on how he should
react and he does all the timenow he can't do one thing
(08:39):
without looking at us for ourinput before he makes the
decision to do something.
It's so terrible.
But back then he didn't evencare.
I thought he would.
He just sat there on his bikein the bushes.
Everything was fine, it didn't.
It didn't hurt him at all.
Of course it was a big asstrike, so I think that was why
it was so safe for him.
But it was great.
(08:59):
I thought that was going to bea nightmare, but it was totally
fine.
And then we ended up moving toJefferson, so it was the
Jefferson area of Wisconsin.
The school he went to was inJefferson, wisconsin.
We lived out in anunincorporated part of a
different town but it wasn't far.
I was naive.
I didn't realize back then thatanything we were going through
(09:20):
with this new school was goingto be the new standard, the new
normal.
I didn't realize that this wasgoing to be a thing.
He never had problems in school.
Everybody loved him, everybodytook care of him, every day was
a happy day at school and we hadno reason to believe that that
would change, because he's thesame kid and he has the same
(09:43):
effect on everybody.
Everybody loves this child.
He's adorable and he's a littlemischievous, but he's not good
at it, so that's even cuter.
He just he's a great kid andthe educators always loved him,
so we just didn't think anythingbad was going to happen.
A lot of the stuff from backthen is in deep storage because
(10:03):
of the downsizing that we did,but there's really not much,
because we were there for oneschool year and that's it.
One thing I quickly realized isthat Jacob needs to be preceded
by an instruction booklet.
It wasn't something I everthought about.
We thought that we could justsay this is what he is and is
not allowed, but as he getsolder and the world changes and
(10:26):
more things become available andmore things become mainstream
that we don't really want in hislife, more restrictions get put
on everything and more care hasto be taken, so he does come
with an instruction booklet now.
The biggest thing with thatschool, though, was that there
was no notebook communication.
We would press for it becauseit was a ritual, as I mentioned
(10:47):
many episodes ago.
He would always come home andwe would check his.
Oh my gosh, I don't know if Ieven told you guys about this.
If I have, it'll be overquickly, so just bear with me,
but he used to always come homeand we would check his notebook
immediately to see how he did,just so we had something to
congratulate him on and also wewanted to know how his day was.
(11:09):
But we just liked making himhappy and getting him excited
and rewarding him with love andjoy for a hard day's work.
One day he came home from schooland we were in the living room
and we wanted to check hisnotebook, but it took him a long
time to get off the bus firstof all, and then he came in the
door and we were like where isyour notebook?
(11:31):
And he said just one, minas.
And he scratched out theteacher's words that he
misbehaved and he wrote himselfin there Jacob had a good day,
or something like that.
It was hilarious.
We were so proud of him forjust being that much of a badass
(11:52):
.
Already you know whatinitiative you know.
So anyway, that notebook wasused every day and all of a
sudden we're at this new school.
We told him about the notebook,we sent the notebook, we
introduced ourselves at theparent-teacher opening day.
We talked at length with thestaff of educators there that
(12:13):
were going to work with him.
We gave all of the information.
Everything was would havenothing to congratulate him on
and he didn't really have thewords to say anything about
anything.
It was like it was none of ourbusiness is how it felt.
(12:35):
So we started to press themabout the notebook.
Why don't we have a notebook?
We would really like to knowhow his day is going.
His day is going fine, is whatthey would say.
We would say well, we have anotebook and he relies on it and
we think that he seems a littlesad and maybe feels neglected
because he's not getting thepositive feedback from school
(12:58):
and we're also not finding outanything else that goes on.
We like to know how he handleshis day and we would like to
have the notebook filled outevery day.
And they just wouldn't do it.
I thought that was a finereason and a fine argument for
why we wanted to have thecommunication coming and going.
I think they said something tous like you don't say anything
(13:21):
to us in the notebook, you know.
So we started having to writestupid stuff to them in the
notebook, just so they would beour pen pals and write back in
the notebook.
And it was dumb.
You know he just started actingout.
I don't remember other than thefinger stretching, and you know
these little neurotic thingsthat started coming up.
(13:42):
There was something about himand about the way they were
acting that just put me into apanic and I started frantically
researching and searching theinternet for, at the time, spy
cams.
There was nothing like what'savailable now.
The only things I could findwas like a nanny cam inside of a
(14:03):
teddy bear, or a button, a pin,you know, like a smiley face
pin that you can put on hisclothing with a little camera on
it.
But obviously there are severalthings wrong with that, so that
wouldn't work, and thesecameras were hundreds and
hundreds of dollars.
I just couldn't find anythingthat would be believable.
You don't want to put it on hisclothing for obvious reasons.
(14:25):
You don't want to put it on hisbackpack if they're not going
to have the backpack with anearshot.
I didn't necessarily need tosee everything that was going on
.
I just felt like maybe I shouldsee it, maybe I needed to hear
the environment that he was in.
Something was wrong and I wasso depressed about it.
I searched frantically everyday trying to find a solution to
(14:48):
put a monitoring device on himwhere I could hear and or see
what's going on in the classroom.
So something was obviously notright.
I just couldn't prove it.
I don't know what would havebecome of it all.
I'm glad that we moved awayfrom there, but that did start
the downfall of the happy Jacoband everything started to get
(15:12):
stranger and stranger after this.
I am really glad we moved, but Idid end up typing up like a
care sheet, a care booklet forhim and, in case you need to do
something like that, this isvery thorough for us because we
have noticed how he reacts toall of the foods that I've said
we leave out of our diet now.
(15:32):
So the instruction booklet ishow to talk to him, what names
he likes to be called, how togreet him, how to interact with
him, specific words and phrasesthat trigger happiness with him
and trigger cooperation.
There is a certain way to talkto him.
His dad has been doing it eversince I met them, so it's what
(15:55):
he responds to.
It's our opinion that maybeeveryone should just be aware of
the easiest way to deal withhim and to interact with him, so
that you can save yourself time, save yourself hassle, save him
any kind of negativity and justbe able to function a lot
better.
It's much more efficient whenyou have the 411 on how to deal
(16:15):
with the entire individual.
The more complicated he hasbecome as he's gotten older, the
more valuable I realize thatthat information is.
I'm talking about allowed foods, how to diffuse him, how to
motivate him.
These are all things I took forgranted, I guess I just didn't
think it was that hard.
I know nothing about it, I justfeel him out.
(16:37):
I know what works, I know whatdoesn't work.
I know if I want to piss themoff.
I know how you know.
I like to have that stuff in abooklet.
It's not long.
I ask them to read it.
It's just two pages, front andback, typed up.
It's not that big, but it'svery specific, easy to follow,
and they didn't want to do it.
(16:58):
That is what I didn't realizewas going to become a thing.
It became the new normal andit's just not fair.
It's not fair to him, it's notfair to us as his parents who
have to live with him, and it'snot fair to the other kids.
It's not fair to the specialclassroom, it's not fair to the
other classrooms.
They wanted to, I guess,integrate.
(17:19):
They wanted to integrate himinto regular classrooms.
I think that started at theJefferson one.
That might have been part ofthe problem I wish I remembered.
I just didn't.
I don't know.
It was a short thing.
There was a lot going on and wewere just trying to get through
it and keep everyone alive.
So my memory is very foggy onthat one, but at least we were
(17:40):
there for a short time.
In my next episode and everyepisode following, I'm going to
start detailing the next sevenyears of our severe autism
lifestyle.
I'm going to do my best toinclude something good and happy
, you know, some kind of goodnews, some kind of funny story
in every episode, and it'sbecause this shit gets really
(18:03):
heavy.
It's heavy for me.
It might not be as heavy tolisten to as it is to talk about
, but it's going to be rough andit's everything that became the
beginning of the reason that Ifelt called to do this podcast.
Everything coming up is thestart of that.
The worst of it is what got medoing it, and that was within
(18:27):
the last three years, I think.
But we're going to talk aboutthe years between 12 years old
to 19 years old.
So it's going to run the gamutthere and this shit is heavy.
So I do want to tell you Ithought that we had mornings
figured out, but now he's goneand thrown me another curveball
(18:47):
here.
Every time we think that we aresafe and able to have a calm
time of it.
He came down the other day.
It was the day after I recordedmy last episode.
He comes downstairs first thingin the morning, raging, just
super upset, not hearing anyreason, not going with the
program.
He knows how mornings have togo for him to have a good
(19:09):
morning.
He's got to let his medicinetake effect.
There are certain steps thathave to be taken.
He knows what they are and onthe days that he chooses not to
allow those steps to happen inthe order and at the length
they're supposed to happen,everything goes to hell.
So he's doing that on thisparticular morning and he kept
yelling how he doesn't feel good, but he wouldn't let us help
(19:31):
him and he just wanted to rageand he just wanted to yell at
everybody and he kept stompingaround and punching himself in
the head, just all kinds ofstuff.
The final thing that he did hewas put in his bed.
He was told to relax, he wasthreatened with the no pizza,
all that stuff, and he didn'tcare.
He got back up out of bed alittle while later, sweating,
(19:54):
heavy, breathing, all of thethings because of all the
flapping, and he puts his robeon and comes storming down into
our area.
The robe is open, he's justflying around and starts raging
like almost like seething, youknow the breathing through his
teeth and all that.
He starts saying how he doesn'tfeel good and instead of the
(20:16):
whiny he usually says I don'tfeel good.
But instead he was like I don'tfeel good and he starts taking
large, giant, stompy stepstowards his dad and there's only
room for him to take like threesteps in this room, not a lot
of room.
His dad is sitting next to me onthe love seat with his eyes
(20:36):
closed, trying to cope withwhat's going on, and a lot of
times if we close our eyes ordon't look at him, it kind of
diffuses him.
So he was doing that.
I didn't know, I was lookingelsewhere, because I was also
trying to do that and all of asudden I hear Jake, what the
(20:57):
fuck?
And I look and he, as he was,stomping, stomp, striding
towards his dad.
He took his entire package outof his underwear and fluffed it
over the top and left hisunderwear tight across his legs
and he's got his whole, hiswhole thing there.
Everything is just hanging outover his waistband and he's
(21:20):
stomping towards his dad andthat stuff is right at face
level when we're sitting andhe's standing and so, yeah, and
then his dad says later what isit with him and sleeping people?
If he would have thought I wasa sleeper, if I didn't open my
eyes, what was he going to do?
Because of the method I toldyou about, that was sleeping on
(21:42):
the couch.
He knew his dad wasn't sleeping, obviously because we had been
fighting with him.
But, yeah, that's what happened.
So mornings are not reliable.
Again, it only lasted a littlewhile.
We're right back to thecraziness.
What are your mornings like?
If you ever have time and youwant to tell me about your
mornings or your evenings or anyspecific time of day that just
(22:06):
is great or terrible on aregular basis, is there a
pattern?
Anything you want to share withme?
Please feel free.
If you want me to share it withothers on this podcast, let me
know in an email.
Otherwise I'll just keep itbetween us.
So you can email me atcontactparentingsevereautism at
(22:28):
gmailcom.
You can also send me a text, Ibelieve through my Buzzsprout
website, which hosts this wholepodcast.
So that is psabuzzsproutcom,and I think if you leave me a
note, even on Facebook or on Buyme a coffee, you can leave me
notes all over the place.
I eventually get thenotification.
(22:50):
But yeah, I'd love to hearanything you want to share.
Feel free, I'm here for you.
Overall, I guess the lesson herewith the whole moving thing
that I was talking about beforeis that, even though I was
raised that that kind of stuffis adult stuff that I don't need
to worry about.
That's how I viewed it and Ithink that's how my spouse
(23:11):
viewed it too.
You know, you tell your kidthat you're going to move, you
let them know that they're goingto lose all their friends and
find a new place and all thatstuff.
You talk about it, but youapproach it differently with a
kid who's not like Jacob.
But the lesson here, I think,is that adult stuff like that is
autism stuff too.
(23:31):
In my opinion, it's better toinclude him on a conversation,
because it's adult stuff, Iguess, and you're always taking.
He may not even understand, butI feel like I'm.
You know, you make a mistakewhen you figure it's just adult
stuff and you don't have toconsult the child with all of
his particulars.
You have to consult him andprepare him in a different way
(23:53):
than you would prepare aneurotypical child.
I guess that's the lesson.
Just remember that adult stuffis autism stuff too.
It has a huge effect.
You hang in there, you're asuperhero.
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