December 4, 2024 • 38 mins
Navigating the world of parenting a child with severe autism can be both a heartwarming and harrowing journey. Join us as we recount the triumphs and trials of teaching our son, Jacob, to communicate and expand his vocabulary. While there are moments of joy, we also confront the struggles that come with Individualized Education Program (IEP) meetings and the frustration when communication with educators falls short. Discover how we balance the lack of clear guidance with the urgent need to advocate for our child's needs.
As we brave the biting cold of winter, we face the unique challenges of ensuring Jacob is dressed appropriately, considering his sensory sensitivities. From the comic chaos of morning routines to the serious subject of empowering Jacob against bullying, we share how humor and patience are essential in tackling these everyday parenting challenges. We also confront the unsettling reality of potential mistreatment at school, underscoring the importance of vigilance and advocacy in ensuring a safe and supportive environment for our son.
Reflecting on the emotional landscape of caregiving, we explore the delicate balance between managing screen time and fostering a nurturing community for our son. Our journey includes the unanticipated lessons learned about the psychological impacts of screen time, along with efforts to teach Jacob basic life skills like handwashing. Through stories of struggle and resilience, we aim to inspire fellow parents facing similar journeys, reminding them of the power of community support and the superhero strength needed to navigate the complexities of raising a child with severe autism.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (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.
I prefer to read the transcript, and you can't find the
transcript on your hostingplatform, you can always head
over to psabuzzsproutcom whereyou'll find my transcript, show
notes, links to recommendedproducts and also some podcast
(00:41):
merchandise.
I've got some coffee cups,water bottles and stickers and
stuff like that available ifyou'd like to support the
podcast or if you'd like topoint someone else in this
direction, you can also buy me acoffee.
A portion of the proceeds willgo into an account to help
another severe autism family inneed who cannot afford the
(01:01):
specialty therapy items, fooditems or other means of support
for their loved one.
Well, let's get into this newschool nonsense that I've been
talking about.
I want to get this part wrappedup because there's so much more
to tell.
I first want to say that it'snot that he didn't have anything
good happen.
He was coming home anddemonstrating that he was
(01:22):
learning things.
He was able to give two andthree word weather reports.
He would say sunny, blue sky orcloudy, cold, rainy.
You know things like that.
He was able to say the date.
He was learning his name, hisdad's name.
They were trying to teach himhis address again.
He was learning his date ofbirth.
This is an ongoing thing.
He's still he's.
You know, he's almost 24 and westill have to work with him all
(01:45):
the time on what his date ofbirth is.
Just dates period.
There's a lot.
It never stops All of thethings it's like.
.
.
It's like that movie 50 FirstDates; Every morning she wakes
up and she has no recollectionof life and he has to put a
little movie in for her everysingle day so that she can
relive her life up to thatmoment, her every single day, so
(02:07):
that she can relive her life upto that moment.
Or she didn't even realize thatshe had kids.
She didn't know.
You know, that's kind of howthis is with him.
We have to relearn everythingall the time and it's really
difficult.
I'm sure you know that.
We'll get into that anothertime.
But he was also demonstratingthings, new forms of
communication which were reallycute, and here's one of my
favorites - I was talking tohim about something and he was
(02:28):
sitting in the kitchen chair andI don't even know what I was
talking to him about, but I wastrying to communicate something
of import, and he just startsshaking his head and looks at
the floor and he says I need youto stop talking.
That was the last thing Iexpected him to say.
Ever, I never.
We don't say that.
So I knew he got it from schooland it was hilarious, just
(02:50):
because I mean really?
He kept saying it.
And when he says need, he saysmeed with an M because he
doesn't form his words.
Another thing, back then theyhad him clocked at a little over
a hundred words in hisvocabulary, which I thought was
fantastic, and they were workingup to 150 at the time.
So at 12 or 13 years old he wasat a little over 100 words in
(03:11):
his vocabulary.
He was able to take verbal cuesand bring them home and use
them on me and it was, you know,it was cute.
But the negative aspects so farwere overshadowing what he was
learning and what he was able toshow us that he was learning.
Yes, we scheduled an IEP aboutwhy he's throwing himself on the
ground when he gets off the bus, why he's so upset every day
(03:34):
when he gets off the bus, and wedidn't get any answers.
Everyone likes to act like he'sa mystery, even though he had
over a hundred words in hisvocabulary, it's still the
cop-out for everyone, whetherit's extended family or
educators.
People like to play the oh well, he can't talk card, so we
don't know what his problem is,because he doesn't communicate.
(03:56):
That's the cop-out that theyuse.
So we just kept scheduling IEPsand as time went on, I learned
a couple years later, actually,I learned that IEPs are actually
able to be scheduled asemergency meetings and they have
to be done within I don't know24 hours or two days time or
something like that, and you canhave as many of them as you
need to.
All of these things we didn'tknow before, when we never had a
(04:18):
need to ride the teachers thishard before.
So we were still learning everystep of the way and there was
no playbook that we were awareof.
We scheduled IEPs, we didn'tget answers, and I remember at
one point I may have told thisstory before, but I'm just going
to go over it because this isall within a short amount of
time there was one IEP, and Ibelieve it was.
(04:39):
This was either in November orJanuary, and the reason I say
that is because it had to dowith an assembly.
So it was.
This was either in November orJanuary, and the reason I say
that is because it had to dowith an assembly, so it was
either like a homecomingassembly or perhaps a holiday
Christmas time of assembly.
Okay, so we get this IEPscheduled.
We're just trying to figure out.
Why is our son so unhappy?
He's very, very unhappy.
(05:02):
I'm now walking up to the doorsof the bus to get my child
because I don't want him fallingon the ice and snow when he
throws himself on the ground.
This didn't stop.
This was constant.
I just couldn't figure it out.
So we go to this meeting.
Now we start to find out whothese people are, after so many
meetings of them saying, oh well, we just don't know.
I don't know.
He's fine at school, he'slearning, he's interacting, he
(05:25):
gets along with this male gymteacher.
Everyone is nice to him.
All of a sudden we find thatthis one teacher says that she
basically forced him into anassembly.
There was a parade and anassembly in the gymnasium.
The parade, I guess, wasoutside.
I don't really know.
I was too mad to recall allthese details.
Later she said that she forcedhim to go to an assembly.
(05:47):
He did not want to go.
He did not have any protectiveearmuffs or headphones or
anything.
He didn't have any sensorytools available to him to help
him deal with this assembly andhe did not want to go.
And in my mind and in his dad'smind, that alone is enough to
not make him go.
I don't know why she did that,but she said that she basically
(06:08):
forced him down the hall, forcedhim into the gymnasium and do
you remember how loud theseassemblies can be?
Pep rallies, assemblies, allthat stuff.
And remember our son couldn'teven deal with just the general
noise of a little sports game ina gymnasium that was much
bigger for the Special Olympicsthan a school.
I don't know, but he had noprotection and no one was there
(06:31):
to help him.
And she forced him into thissituation.
Well, no freaking wonder he wasso unhappy all the time.
No one had any respect for himand his sensory needs.
We were pissed.
So my spouse went off on herimmediately.
We both were just like.
You cannot do that.
He has autism, don't you knowwhat that means?
(06:51):
And she says to us well, if younever let him experience
anything, he's never going toexperience anything.
So that was the brilliance, thepearls of wisdom that we
received at our IEP meeting atthat time.
We had to put it in writing,put it in his report, that he is
not to be forced into assemblysituations or any loud parade
(07:13):
type things and that he shouldalways be sent home with a
notice and a permission slip ifthey want him to attend.
We didn't even havenoise-canceling headphones at
the time because we lived aquiet life for him.
We did this for him.
The things that he was used todoing that were noisy were fine
because he was used to them andhe had been doing them and had
(07:34):
his family members doing themall his life.
But new things that he is notaccustomed to, if they are noisy
, obviously he needs a littlehelp coping with that.
So that was one of the firstgems that we got from them.
And then in the first week ofDecember I find that parts of
his clothing have been removedfrom his person.
(07:54):
When he comes home he is notwearing them.
His shirt, I think, was in hisbackpack and there was a little
post-it note on there sayingthat our school policies don't
allow this shirt.
And yes, that was our fault.
In the nightmare of getting himready in the morning, we
overlooked the artwork on hisshirt.
His shirt was something that hewore at home all the time, so
to us it was perfectly normal,but it was a Call of Duty shirt,
(08:18):
I think that's what it's called.
There's a movie and a game andit's a soldier.
He's got his eye in a scope.
It didn't actually have a fullrifle on it, but I guess it was
bad enough.
And I understand.
I get it.
That's the rules, fine.
But when I was in high school,when I wore my Guns N' Roses
shirt that they disapproved of,they made me turn it inside out.
They didn't make me take it offand walk around without a shirt
(08:40):
.
So that's what I'm wonderingwhy would you do that to my
special kid?
That was our fault, but here'swhat I said to them, to all of
Jacob's teachers and aides weare sure that the school faculty
is well aware that Jacob hadbeen fighting a cold for the
past two and a half months.
During Thanksgiving break, wewere finally able to completely
(09:01):
get rid of his cold, along withthe recent sinus infection that
had stemmed from it, as Imentioned.
I don't know if that wasrelated to the smoke being blown
in his face or to all the sickkids around Because of the
extremely cold weather forecast.
We just had a very in-depthfamily discussion about the
importance of layering ourclothing in order to help keep
us warm and healthy.
Obtaining Jacob's understandingand agreement to this concept
(09:24):
was no easy task.
We finally got his consent toinclude long-sleeved shirts over
turtlenecks in the layeringprocess.
When Jacob left for schooltoday, the temperature was well
below zero.
He was prepared.
He layered his clothing justthe way we talked about.
When Jacob arrived home fromschool, the temperature was a
mere five degrees.
(09:44):
We were horrified to see whathe was wearing under his coat.
Someone took it upon themselvesto remove Jacob's long-sleeved
shirt his second layer over hisnot-so-heavy turtleneck.
Not only is undressing ourchild without our permission
unacceptable, it also puts amajor damper on the progress we
(10:04):
made at home with our child inthe action of layering our
clothing.
If we say yes and the teacherssay no and proceed to undo what
we worked to create, that issending a very confusing message
to our son.
We need the entire schoolfaculty to receive the following
message, and of course this isin all bold capital, underlined
(10:24):
print under no circumstance is afaculty member or student to
remove clothing from our childwithout first obtaining our
verbal consent.
It goes on to read someoneshould have called us and told
us there was a problem and wewould have brought a different
shirt for him to wear.
We don't ever want to see Jacoblose his layers in this sort of
(10:47):
weather again.
If the school policies areagainst the artwork on Jacob's
shirts, the least you could havedone would be to turn it inside
out and allow him to still wearhis layers of clothing.
You have no right to decidewhat is warm enough for our
child.
Also, at the very least youcould have allowed him to wear
the shirt when he went outside.
(11:08):
We completely disapprove ofyour actions.
Hope you understand why.
So that was my first majorcommunication to this new school
.
So yes, we had many concerns.
You know he's very skinny.
He's always been skinny, almostlike POW skinny at times and
they say it's just because ofhis constant stimming.
He burns so many calories hejust can't keep anything on his
(11:29):
bones.
You know, with him being sick,all of that stuff, we had never
been in such a cold climatebefore.
The weather was so cold forthose first two years that the
wildlife died.
From there all the way up intoMinnesota, the wildlife was
dying because the winter was soharsh.
They didn't have anything,nothing to sustain them through
the winter.
It was terrible.
(11:49):
And they are sending my childhome with half of his clothes
off.
I was just pissed, obviously.
Here's the other thing.
You know, I taught Jacobsomething, right?
I love to empower my boy.
Before he went back to schoolthe next day I sat him down and
I taught him look, nobody takesJacob's clothes off at school.
You could tell he was upsetabout it too, because he lit up
(12:12):
instantly.
He knew I was getting ready toteach him something that he
could use.
I asked him who took the shirtoff and he said teacher.
So I taught him if you're, if ateacher or anyone, if anyone
touches you and tries to takeyour clothes off, this is what
you say.
I taught him to kind of put hisarm out to get arm's length
away.
Keep them away and startscreaming no teacher, that's a
bad teacher.
(12:32):
No teacher, that's a badteacher.
Bad, bad teacher.
And he loved that.
Of course, he loves yelling ateverybody.
I think he still knows thatlesson to this day.
But I have to teach him how towash his hands.
For 15 years I don't know.
So why was it such a nightmareto get him ready?
Well, of course we had the newshoes, where you know he has to
tie them, so we were pretty muchtasked with tying them, and if
(12:54):
it was snow then we had to gethis snowsuit and his boots and
all that.
We were teaching him how to getsome of that stuff on.
He could step into his snowsuit, okay, but the rest of it was
just kind of up in the air.
He really needed an adult tohelp him with that.
However, he was so miserablethat he just wouldn't cooperate.
He would come down the stairswhile I'm cooking in the dark
(13:15):
for him before I even have mycoffee, trying to get him a good
start to his day.
He would come down hissing andscreaming and just all kinds of
stuff.
So our first interaction everysingle weekday was I'm silently
cooking, he comes out of hisroom and he goes and does all
these terrible noises and I sayno, and every day that's how I
(13:35):
got to start my morning.
That would kick it off.
And then, after he ate, whichbecame more and more of a task
he was so depressed, I swear toGod, he was so depressed.
He didn't even like hisfavorite food anymore for a task
.
He was so depressed, I swear toGod, he was so depressed he
didn't even like his favoritefood anymore for a while.
He went from eating within anormal time frame to taking
forever to eat.
And now we're like, hey, yougot to hurry up, you got to get
(13:55):
ready, but now his pants arefalling off, he's not doing
anything, he wasn't cooperating.
I guess is what I should say,the funniest memory of all of
that.
I didn't think it was funny,but his dad thought it was
hilarious and since he did, here-delivered it to me after the
fact and it is pretty funny.
(14:16):
So Jake's running around notcooperating, his pants are
falling down because he didn'tput his belt on and this became
a thing.
He would either have his belton and then take it off, or I
don't know, but it just became athing every stupid day.
One day he was giving us so muchtrouble it was time to go.
I asked him he's, you know,just just pissed, not having it.
We're just not getting along atall.
And he wouldn't get this and hewouldn't get that, and he just,
he just would not cooperate.
(14:36):
So by the time it gets to theactual outerwear, I'm pissed and
I said, as he's coming down thestairs, I see that his shirt's
tucked in and he has no belt andhis pants are falling off.
And I said where is your belt?
I had already sent him upstairsthree times to put his belt on
and he comes downstairs no belt.
He says she's upstairs.
I said then go get her and hisdad.
(14:58):
He held it in really good.
But after Jacob left the house,his dad just lost it started
cracking up.
But that's the kind ofrelationship Jacob and I have
He'll give me shit and I'll giveit right back.
But yes, it was that kind ofthing.
He went from being a totallycooperative, loving, obedient
child to being this absolutenightmare.
Okay, now the school knowsabout the shirt and now he is
(15:22):
empowered to start yelling atthe teachers if they touch him
right.
So we call another IEP meeting.
Surprise, surprise.
We're saying hey, first of all,don't undress my kid.
I hope you got the notice.
Secondly, he's still very upseton the bus.
He's visibly crying when I seethe bus pull up.
What is going on?
And then that same idiot teacherthat forced him into that
(15:44):
situation at the assembly goeson to say at this meeting, new
information that seems to havebeen going on as long as school
has been in session, but shejust didn't think anything of it
until this particular day.
She says, oh well, there isthis girl that likes to sit by
him on the bus and she'll savehim a spot and she'll say hey,
jacob, come sit over here.
Well, that didn't sound too bad.
(16:05):
And she goes on to say I thinkmaybe she's you know, she's kind
of feeling like his big sister.
She wants to be a big sisterkind of energy for him and I
guess it can be a littleoverbearing.
Maybe he's seeing it asoverbearing or controlling.
She described a couple actions,I think, and we just said oh,
you mean a bully, you'recondoning a girl bullying our
(16:27):
son on the bus and you nevertold us about this.
He can't tell us why.
Why didn't you tell us?
So we go home and I go up tothe bus driver and I say that
girl is not to sit by that boyever.
Do you understand me?
I don't want them anywhere neareach other.
Can you please help us?
He has special needs and shedoes not care about him, she
(16:48):
doesn't know him at all and heis crying every day.
He gets off of your bus and Ithink you need to do something
about it.
Oh yeah, okay, sure, andthere's supposed to be a monitor
on the bus.
I don't know what the story waswith that.
They were separated for a fewdays.
He had been a little more calmduring the few days they were
separated.
Then they were not as separated.
(17:12):
They were really a lot closerthan they were before, but he
wasn't as pissed off.
He wasn't throwing himself orcrying at the time, but they
were pretty close.
And then the next day theirseats were even closer and I
said, hey, man, what are youdoing?
I don't want her by him.
And it became another IEPmeeting.
So now we're like okay, whydon't you do something to help
my kid stay away from that girl?
(17:33):
I don't want to go back towhere we were before.
And she says well, you know, Ihave both of them in two or
three I think she said three ofher classes.
I have both of them in threeclasses together and they sit
right next to each other andusually there's a partition
dividing each desk so that everystudent has their own private
cubbyhole.
But when they sit in my classtogether, I remove the partition
(17:54):
.
It is out of pure love and light, that I want to strangle this
woman when I hear this what thehell are you talking about?
Why would you do that?
You just told us two weeks agothat she was bullying my son and
that you've known about it allthis time.
And now we say we want themseparated, so you smush them
together.
Are you arranging a marriage?
(18:14):
What is wrong with you?
And she basically said well, Ireally don't care.
I don't think we got anythingresolved there.
They just they pretended yeah,okay, we'll, we'll try to do
what you say, but you have tounderstand our class isn't
always set up just to deal withhim.
And they started to tell usabout opportunities that were
coming and I kind of started tofeel like it was a carrot and
(18:36):
stick situation.
They started saying well, if hecan just get through this year,
halfway through next year,he'll be old enough to enter
into the life skills program.
And we're like, wow, what'sthat?
We had never heard of thisbefore.
And they said, oh well, there'sthis separate building in this
other town, you know about 10minutes away, and they would
take a special vehicle overthere for kids aged 15 to 21.
(19:00):
At the time in Wisconsin, theschool age for kids like ours
was 21.
So they could get school allthe way through their 21st year.
So we were like, oh wow, sixyears, that's awesome.
What is it?
And it turns out that it's aprogram where these kids go to
kind of like a house environmentand they learn how to do chores
(19:21):
and cooperate together and worka schedule together and they
start learning life skills undersupervision.
They have a whole setup so theycan make beds.
They could just do things.
At the time we didn't reallyhave a lot of dietary
restrictions going on, exceptfor the regular sugar and dyes
and stuff like that.
We weren't fully gluten-freefor him or anything like that.
So we weren't too afraid of himlearning things in an
(19:44):
environment like that.
In fact we were very optimisticthat this would happen for him
and we were really gettingexcited about okay, well, let's
just finish out the year here,because then he'll only have a
few months and as soon as theyare willing to accept him into
the program, he'll go into thatprogram for six years.
He'll have peers that he knows.
He'll have skills that he'sdeveloped.
(20:06):
He can really enjoy himself.
Because obviously school, theway that it's designed, is not
for our kids.
I don't think any of that stuffworks for kids like ours, and
it was almost like hey, put upwith our bullshit, because
here's this pie in the sky,there is a place that he's going
(20:31):
to be able to go and theschool's paying for it.
It is still schooling, but it'slife skills instead of academic
skills.
So great, awesome.
So now we're excited.
Then I'm going to say this hadto be.
I'm going to say it had to beFebruary when the final straw
happened.
Okay, and I know I told thisstory.
So this is the bath story.
(20:52):
I was giving him baths becausehe was so miserable and I just
wanted to give him somethingthat would make him feel
pampered.
We weren't able to get to thebottom of why he was so unhappy.
Despite all the meetings andall the corrective actions we
were trying to take witheverybody, he just didn't seem
to be getting any better, andthe only thing I knew that gave
(21:12):
him a little bit of happinessand nurturing were baths.
He loves my spa days with him,so I started bathing him almost
every day of the week just tohelp him relax and decompress
and feel pampered and loved.
I couldn't bear to try to teachhim how to bathe himself
anymore.
I just didn't want to make himwork for it anymore.
(21:33):
You know, there was only somuch I could do to make him feel
happy.
So I'm bathing him and I knowyou heard the story if you've
listened to my other episodes,so I'll go quick.
But I was cleaning behind hisears and he said ow, real small
and quiet, and it just instantlyI my heart dropped.
I thought I broke him.
I mean, that's always yourfirst thought, right?
Oh shit, I broke him.
Then I start checking him overhead to toe and I'm like did I
(21:55):
do that?
Was that me?
Did I hurt him?
And that's when he said teacher, hurts me ear.
And that's where I asked him toshow me what happened and he
was afraid to touch me.
And I told him to show me whathappened and he was afraid to
touch me and I told him it wasokay.
And he put his thumb andforefinger around the cartilage
of my ear and gave it a squeeze.
He looked like he was going tobe in trouble about it and he
never gets in trouble, like youknow.
So that really was sad anddamaging and alarming all at
(22:18):
once.
And I babied him even moreafter I learned that.
And then his dad.
I asked him to show his dad thenext morning because his dad
was at work at night.
He was afraid to do it to dadand we said it's okay.
And he did the same thing todad, but he squeezed his ear
harder.
We were just devastated.
So we decided to keep him homefor a couple of days.
We just called him in sick andwe didn't know what to do.
(22:39):
We were just beside ourselvesthat this would happen and he,
even though he had that historyof doing sneaky little things
like changing the message in thenotebook to make himself look
good and stuff, even though hehad done stuff like that, we
didn't feel that he was gonnajust make stuff up.
He's a pretty reliable source.
If he's talking and he's sayingthe words, then he must mean it
(23:01):
, it must be true.
We kept him home for a coupledays.
That was probably on.
I'm guessing that was on aWednesday, you know.
So we kept him home for therest of the week and then on
Monday I go to feed himbreakfast.
We're still talking about whatto do.
We had scheduled a meeting forthe coming week and we didn't
know what to do.
He's sitting at the table forbreakfast with his head in his
(23:21):
hand, and I have never seen himsit like this.
He's such a bubblyfive-year-old personality, even
at 13.
All the way to now, he's abubbly, vibrant five-year-old
personality when he's in hisbest form.
And that was gone.
His dad sometimes wasn't aroundto see it and I had to either
go grab him or record it forlater.
(23:44):
But my most memorable thing ofhis misery is him sitting at the
kitchen table with his head inhis hands and then just shaking
his head.
He has his eyes closed and helooked really grim and he was
just shaking his head in silenceand he just looked like, like,
like.
If he was neurotypical I wouldhave judged it, as he looks like
he has no one to talk to.
(24:06):
He looks like he has no support.
He looks like he thinks nobodycares and he's in this private
hell all by himself.
And it broke my heart as Iwatched him eat that morning.
I just decided that I couldn'tsend him to school and we ended
up keeping him.
Him to school and we ended upkeeping him.
(24:30):
So I know that, you know.
I know that we should haveprobably pursued a lawsuit or
something.
We didn't know what to.
I don't know, I don't have anywords.
Honestly, I can't defend ouractions.
All I can tell you is how wefelt about it, and here's how we
felt.
We didn't want him to sufferanymore.
We didn't want him to struggleto find the words or to not be
able to find the words at alland go through things that he
(24:50):
could not tell us about.
We didn't have access to anykind of spy cams.
We didn't trust the teachers tobe honest with us.
We knew that they already usedhis disability against him as,
oh, we can't communicate withhim.
We knew that this lying bitchat school was probably going to
continue to lie.
We knew that we were trying torun a business, still build the
business, keep our house afloat.
You know, if we missed one dayof work, there was a good chance
(25:13):
that we wouldn't eat for acouple of weeks because we were
in direct sales.
There was nothing else for us.
So we had to do it, and I was asignificant part of getting
those appointments.
That was my job, and then myspouse went out to sell at the
appointments.
We felt that we could either gothrough all of that and try to
find an attorney and try to suethe school district and try to
(25:34):
fight the fact that, no, hecan't talk all the time and no,
he doesn't have a great grasp onreality, and you know all the
things that they could possiblythrow in our faces.
We just decided that we justcouldn't send him back and we
ended up pulling him out ofschool.
So the next adventure willstart in my next episode.
I wanted to say I found out whatthe golf ball size, bruise and
(25:57):
welt was on his arm that Italked about a couple weeks ago.
He's biting himself now.
I know that might be normal forsome of you, but we've never
had that before.
I've never seen him do itanyway, and I've never seen bite
marks on him.
I did have one time where hisuncle's girlfriend's son was.
I don't know, he must have beenthree or four and my kid was
(26:17):
probably 10, but he's a veryaffectionate little guy, you
know, and when someone'ssnuggling up on him he just
leans into it and he giggles andhe laughs, and he doesn't know
anything but physical affection.
He doesn't know pain inflictedby others.
At that time he hadn't had hisear grabbed by a teacher yet.
He was younger.
But I stood there and watchedthis little boy come up and
(26:38):
start snuggling on my kid's backand my kid was like and this
little boy bit him in the back,was like and this little boy bit
him in the back.
I instantly start banging myfist on the window at these two
people that were supposed to beparenting this child and telling
them your kid just bit my sonand they didn't do anything
about it, but my kid's over herecrying.
He had never had a falseaffection before.
(27:01):
He thought he was getting love.
And then he gets bit and healmost drew blood.
I was so mad.
But now I'm seeing my kid bitehimself.
I couldn't believe it.
It was a Sunday.
I have some nerve Every Sunday.
I wake up thinking that this ismy day, like, oh, this is my
day to relax, I'm going to havea great morning, I'm going to
(27:22):
relax, I'm going to do what Iwant to do.
Just a couple fine Sundaymornings ago, the first thing he
did was the first thing he doesevery single Sunday, and I
apparently have trouble learningthese lessons right.
So he starts, he comesdownstairs, he doesn't have his
medicine, water, and he said I'msad.
First thing I'm sad.
And I said why are you sad?
(27:42):
And he says usually, you knowit'll be some bullshit.
He'll say, oh, spider-man, youknow, or whatever.
But this day he says I'm allalone, I want to go home.
And you know that hits me inthe heart.
Every time he says that, eitherone of those statements and he
said them both at once, it'slike he's got the key to me.
He knows, you know, but also Ithink he's just being honest.
(28:05):
As you know, we're not in agreat environment right now, but
I'm grateful for the roof wehave over our heads.
I'm grateful that we have, youknow, the walls around us.
We have heat, we have food, wehave everything that we need and
we have very little bills.
So that's exactly how we needit right now.
However, it is not the idealsituation, right, and I have to
always say, well, this is home.
(28:27):
So this time I said well, jacob, this is home, you're with
daddy and doll and papa andyou're not alone.
It will get better, I swear.
I promise it will get better,and it's really hard, you know,
but I really believe it's goingto get better, because I'm
taking all the steps that I knowhow to take to build something
for us and people like us,taking all the steps that I know
how to take to build somethingfor us and people like us.
(28:48):
Anyway, he takes two more tripsup and down the stairs to begin
his meltdown.
He doesn't melt down in onespot, it's all over the place.
Of course His dad's still inbed because it's Sunday and we
have some nerve, thinking we'regoing to chill.
He comes in just storming inand I know he's going right for
his dad and I didn't want him todo another startling dad
morning and get popped in thehead or the leg or something
(29:08):
because dad's sleeping and he'sgoing to scare the shit out of
him, right?
So I tried to hold him back andI usually don't try because I
don't know, I'm not good at it,but I tried to hold him back and
it did work enough to get himto try to turn around.
So then I grabbed his robe andI was like oh, come here, I want
to show you something.
And I was just getting hiscannabis medicine that he now
(29:28):
requires six hours earlier thanusual.
So I'm just holding onto hisrobe because he hasn't yet
learned to slip out of sleeves,while I'm holding onto his
outerwear, I have him watch meget the medicine.
So now he knows what we'redoing.
And we're going to go and havea shot of medicine and we get
into my living area.
And we're going to go and havea shot of medicine.
And we get into my living area.
(29:51):
He acts like he's calming down.
I pulled up the chair for himto sit next to me while I dose
it out.
He sits down and he psychs meout.
He had me thinking he was goingto take a deep breath, a yoga
breath, and he takes a deepbreath in and then he bites the
shit out of his arm right infront of me.
And I couldn't believe it.
And I'm not shocked.
I mean, I don't mean that Iexpect him to bite himself
outside of my vision.
I just mean that well damn, Ididn't know that you were going
to do that.
(30:11):
When did you start doing that?
I was horrified that he'sbiting himself.
Then he starts head punching.
He's punching his head, bitinghis arm and punching his head.
The punching his head has beengoing on for a few weeks, but
now he's biting Jeez.
And he also scratches the hellout of his face lately.
And he doesn't have any nailsthey're so short there are no
nails there.
But he I heard him in the tubthe other day.
(30:33):
He was seething.
I was downstairs.
He was in the tub upstairs andthat's kind of right above my
hallway and I could just hearhim making these awful noises,
sound like a werewolf orsomething up there.
We were like hey, calm down.
And when he got out of the tubhis head was just bleeding.
He just scratched the hell outof himself and that's the second
week in a row that he's donethat and I swear it's like he
(30:53):
has a day of the week for eachaction, but Sundays all the
actions get combined together.
So these are really fun.
And this has been going onSunday.
Nightmares have been going onsince about, I don't know, 2014,
2015.
And for some reason, I stillthink I have the right to have a
calm Sunday.
I don't know.
I can't get it through my head.
Apparently, he's got his plans.
(31:14):
You know, I don't know why Ican't conform to his plans.
Later on, after several moretrips.
Now, his dad is up.
He's up and down the stairs, upand down the stairs, he comes
to dad and he says I'm sad.
And his dad says did you seesomething?
Sad?
And Jacob said dad's dead.
And he kept saying dad's dead,dad's dead.
(31:38):
So he kept saying it and thenhe starts crying.
And then I asked him, jacob,was it a bad dream?
And now he's repeating baddream, bad dream, bad dream.
And he went from sobbing tolilting and skipping I love you,
dad, night, dad Love you.
I couldn't believe it.
And he does this all the timeand I just can't understand.
I'm still reeling from the wayI've been treated for the past
two hours that he's been awakeand he's running around skipping
(32:00):
and singing now in the blink ofan eye so as he skips off to
bed and puts himself down.
I started just kind of talkingto my spouse about the weekly
Sunday morning nightmare, how Ialways seem to just forget and
start my morning as if it's mineand my day to chill.
And then this shit happens allthe time, and I told him how,
(32:21):
just what I told you.
It's been going on since welived in Wisconsin.
Then I told him I said butmaybe today, though, maybe it
really was real.
Maybe it was all about a baddream.
Maybe he was really freaked out.
What if he dreamed that hisfamily was gone?
Maybe he really did dream thathe was all alone.
That would be devastating forsomeone like him, right?
(32:42):
I mean, he's not oblivious tothe fact that we are the only
people that take care of him andtreat him the way he wants to
be treated.
I mean, look back to ourmeeting when we picked him up
after his time with hisgrandparents and he collapsed in
my arms sobbing he knows wherehis bread is buttered.
And for him to dream that hisdad was dead and that he was all
(33:03):
alone.
I can imagine.
I can totally imagine how thatwould stick with him.
He's broody anyway.
I totally get it.
So I felt really bad for him.
And then I was telling my spouseabout how maybe having a
community of similar-mindedpeers might help him.
And then I second-guessed aboutthat and the insanity of this
idea that I have of wanting togroup all of these people
(33:27):
together in a community andexpect anything to be any better
.
I mean, we send him to summercamp with special needs people
and shit still happens, right,he's still slamming his head in
the wall and racking up billsand stuff.
But really I do believe in this, what I'm working on.
I do believe that having morelike-minded peers around him and
(33:50):
around me and you know, parentsand kids alike I think if we
had a community not necessarilyfull-time, but just if we need
respite, or you know our familyvacations if we had a place
where we could go that we knowis severe autism friendly, is
designed just for us and ourkids, I mean, could you imagine
(34:11):
what kind of vacation you wouldhave?
But I do constantly secondguess my sanity on this just
because of how hard it is for meto deal with him.
But really it's just aboutsupport and it's just.
I remember how secure he lookedlike he felt when we walked into
this camp that he goes to andhe knew right away that this was
(34:35):
a safe place for him.
He knew right away thateveryone there was special and
that all the adults there werevery in on it.
They were on his side, theywere supportive.
You know, he did not feelunsafe.
He felt like he was home.
I could see it all over him andI cried tears of joy to see
that.
Hey, I want to say also youremember how, last episode, I
(34:57):
said that I really didn't see aproblem with the online video
game shopping and all that stuffat the time.
Well, the follow-up to that isthat after the online video game
shopping, he later becameobsessed with sites like GameTop
I think it's not GameStop, Ithink it's - he calls it GameTub
, but I think it's GameTop andother sites like that.
(35:18):
He became obsessed Ever sincethat shopping spree online with
his grandma on Thanksgiving.
He just would not stop lookingat it and that became one of his
ramblings GameTop, gametop,gametop, gametop, gametop that's
all he would say.
You know, batman, batman,spider-man, spider-man, game top
(35:38):
, game top, just craziness.
Everything started goingdownhill from there with the
technology and the iPad andeverything.
So while I thought it was cuteand a bonding moment for the two
of them at the time, by thetime the next Thanksgiving came
around and she wanted to do thatagain.
I allowed it because she didn'tcome to see him very often, but
I really hated it because Iknew what was happening and I
knew that he had this OCD aboutit and I didn't want to make it
(35:59):
her problem.
I just had to leave the roomand let it happen and think,
well, I'll deal with it later,and I learned that that's not
really the right thing to do,not for my family situation.
I should have nipped it in thebud and said, hey look, this
isn't healthy for him.
I would rather that we break itup or do it a different way.
Maybe you could just talk to usabout some of the things and we
(36:22):
could give you a list and thenyou could just kind of narrow it
down and let him choose whichones, or something else.
Just do it a different way.
I really wish that I would havedone that, because allowing it
to happen just for the bondingand the once a year visit it
really wasn't worth it in thelong run for us, because it
sticks with him and it damageshim for the long haul.
(36:44):
That was a lesson I didn'texpect.
I don't know why.
I just you know, you learn alot about psychology of him the
psychology of your kid's makeup,right of him, the psychology of
your kid's makeup, right.
It was just a learning processand I just wish I would have
known, because by the secondtime that happened, he was
damaged, in my opinion, forever.
I mean, he just starteddeveloping these weird obsessive
(37:07):
behaviors and it was generallyaround the things that they
would look at together.
And I think it might have beenbecause, one, it was such a long
time spent on the iPad lookingat all of them.
But two, this stuff burns inhis brain and I think that it
really it just doesn't go away.
It kind of creates a new scriptfor him and it overshadows
(37:29):
everything that he knows,everything that he's learning,
and it just becomes hisobsession and it's super
unhealthy.
Well, in my next learning, andit just becomes his obsession
and it's super unhealthy.
Well, in my next episode, I mayjust have my next episode be
questions with dad, but it maycome later too.
So my next episode is eithergoing to be questions with his
father or a follow-up on thenext step that we took, and
(37:49):
we'll go from there.
And, by the way, I'm stilltrying to teach him how to wash
his hands properly, and westarted that in like 2014 or
before.
So, whatever you're stillteaching your kids, I wish you
luck in that.
You hang in there.
You're a superhero.
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your Sh.
, .
I'm so happy that you're herewith me today.
I prefer to read the transcript, and you can't find the
transcript on your hostingplatform, you can always head
over to psabuzzsproutcom whereyou'll find my transcript, show
notes, links to recommendedproducts and also some podcast
(00:41):
merchandise.
I've got some coffee cups,water bottles and stickers and
stuff like that available ifyou'd like to support the
podcast or if you'd like topoint someone else in this
direction, you can also buy me acoffee.
A portion of the proceeds willgo into an account to help
another severe autism family inneed who cannot afford the
(01:01):
specialty therapy items, fooditems or other means of support
for their loved one.
Well, let's get into this newschool nonsense that I've been
talking about.
I want to get this part wrappedup because there's so much more
to tell.
I first want to say that it'snot that he didn't have anything
good happen.
He was coming home anddemonstrating that he was
(01:22):
learning things.
He was able to give two andthree word weather reports.
He would say sunny, blue sky orcloudy, cold, rainy.
You know things like that.
He was able to say the date.
He was learning his name, hisdad's name.
They were trying to teach himhis address again.
He was learning his date ofbirth.
This is an ongoing thing.
He's still he's.
You know, he's almost 24 and westill have to work with him all
(01:45):
the time on what his date ofbirth is.
Just dates period.
There's a lot.
It never stops All of thethings it's like.
.
.
It's like that movie 50 FirstDates; Every morning she wakes
up and she has no recollectionof life and he has to put a
little movie in for her everysingle day so that she can
relive her life up to thatmoment, her every single day, so
(02:07):
that she can relive her life upto that moment.
Or she didn't even realize thatshe had kids.
She didn't know.
You know, that's kind of howthis is with him.
We have to relearn everythingall the time and it's really
difficult.
I'm sure you know that.
We'll get into that anothertime.
But he was also demonstratingthings, new forms of
communication which were reallycute, and here's one of my
favorites - I was talking tohim about something and he was
(02:28):
sitting in the kitchen chair andI don't even know what I was
talking to him about, but I wastrying to communicate something
of import, and he just startsshaking his head and looks at
the floor and he says I need youto stop talking.
That was the last thing Iexpected him to say.
Ever, I never.
We don't say that.
So I knew he got it from schooland it was hilarious, just
(02:50):
because I mean really?
He kept saying it.
And when he says need, he saysmeed with an M because he
doesn't form his words.
Another thing, back then theyhad him clocked at a little over
a hundred words in hisvocabulary, which I thought was
fantastic, and they were workingup to 150 at the time.
So at 12 or 13 years old he wasat a little over 100 words in
(03:11):
his vocabulary.
He was able to take verbal cuesand bring them home and use
them on me and it was, you know,it was cute.
But the negative aspects so farwere overshadowing what he was
learning and what he was able toshow us that he was learning.
Yes, we scheduled an IEP aboutwhy he's throwing himself on the
ground when he gets off the bus, why he's so upset every day
(03:34):
when he gets off the bus, and wedidn't get any answers.
Everyone likes to act like he'sa mystery, even though he had
over a hundred words in hisvocabulary, it's still the
cop-out for everyone, whetherit's extended family or
educators.
People like to play the oh well, he can't talk card, so we
don't know what his problem is,because he doesn't communicate.
(03:56):
That's the cop-out that theyuse.
So we just kept scheduling IEPsand as time went on, I learned
a couple years later, actually,I learned that IEPs are actually
able to be scheduled asemergency meetings and they have
to be done within I don't know24 hours or two days time or
something like that, and you canhave as many of them as you
need to.
All of these things we didn'tknow before, when we never had a
(04:18):
need to ride the teachers thishard before.
So we were still learning everystep of the way and there was
no playbook that we were awareof.
We scheduled IEPs, we didn'tget answers, and I remember at
one point I may have told thisstory before, but I'm just going
to go over it because this isall within a short amount of
time there was one IEP, and Ibelieve it was.
(04:39):
This was either in November orJanuary, and the reason I say
that is because it had to dowith an assembly.
So it was.
This was either in November orJanuary, and the reason I say
that is because it had to dowith an assembly, so it was
either like a homecomingassembly or perhaps a holiday
Christmas time of assembly.
Okay, so we get this IEPscheduled.
We're just trying to figure out.
Why is our son so unhappy?
He's very, very unhappy.
(05:02):
I'm now walking up to the doorsof the bus to get my child
because I don't want him fallingon the ice and snow when he
throws himself on the ground.
This didn't stop.
This was constant.
I just couldn't figure it out.
So we go to this meeting.
Now we start to find out whothese people are, after so many
meetings of them saying, oh well, we just don't know.
I don't know.
He's fine at school, he'slearning, he's interacting, he
(05:25):
gets along with this male gymteacher.
Everyone is nice to him.
All of a sudden we find thatthis one teacher says that she
basically forced him into anassembly.
There was a parade and anassembly in the gymnasium.
The parade, I guess, wasoutside.
I don't really know.
I was too mad to recall allthese details.
Later she said that she forcedhim to go to an assembly.
(05:47):
He did not want to go.
He did not have any protectiveearmuffs or headphones or
anything.
He didn't have any sensorytools available to him to help
him deal with this assembly andhe did not want to go.
And in my mind and in his dad'smind, that alone is enough to
not make him go.
I don't know why she did that,but she said that she basically
(06:08):
forced him down the hall, forcedhim into the gymnasium and do
you remember how loud theseassemblies can be?
Pep rallies, assemblies, allthat stuff.
And remember our son couldn'teven deal with just the general
noise of a little sports game ina gymnasium that was much
bigger for the Special Olympicsthan a school.
I don't know, but he had noprotection and no one was there
(06:31):
to help him.
And she forced him into thissituation.
Well, no freaking wonder he wasso unhappy all the time.
No one had any respect for himand his sensory needs.
We were pissed.
So my spouse went off on herimmediately.
We both were just like.
You cannot do that.
He has autism, don't you knowwhat that means?
(06:51):
And she says to us well, if younever let him experience
anything, he's never going toexperience anything.
So that was the brilliance, thepearls of wisdom that we
received at our IEP meeting atthat time.
We had to put it in writing,put it in his report, that he is
not to be forced into assemblysituations or any loud parade
(07:13):
type things and that he shouldalways be sent home with a
notice and a permission slip ifthey want him to attend.
We didn't even havenoise-canceling headphones at
the time because we lived aquiet life for him.
We did this for him.
The things that he was used todoing that were noisy were fine
because he was used to them andhe had been doing them and had
(07:34):
his family members doing themall his life.
But new things that he is notaccustomed to, if they are noisy
, obviously he needs a littlehelp coping with that.
So that was one of the firstgems that we got from them.
And then in the first week ofDecember I find that parts of
his clothing have been removedfrom his person.
(07:54):
When he comes home he is notwearing them.
His shirt, I think, was in hisbackpack and there was a little
post-it note on there sayingthat our school policies don't
allow this shirt.
And yes, that was our fault.
In the nightmare of getting himready in the morning, we
overlooked the artwork on hisshirt.
His shirt was something that hewore at home all the time, so
to us it was perfectly normal,but it was a Call of Duty shirt,
(08:18):
I think that's what it's called.
There's a movie and a game andit's a soldier.
He's got his eye in a scope.
It didn't actually have a fullrifle on it, but I guess it was
bad enough.
And I understand.
I get it.
That's the rules, fine.
But when I was in high school,when I wore my Guns N' Roses
shirt that they disapproved of,they made me turn it inside out.
They didn't make me take it offand walk around without a shirt
(08:40):
.
So that's what I'm wonderingwhy would you do that to my
special kid?
That was our fault, but here'swhat I said to them, to all of
Jacob's teachers and aides weare sure that the school faculty
is well aware that Jacob hadbeen fighting a cold for the
past two and a half months.
During Thanksgiving break, wewere finally able to completely
(09:01):
get rid of his cold, along withthe recent sinus infection that
had stemmed from it, as Imentioned.
I don't know if that wasrelated to the smoke being blown
in his face or to all the sickkids around Because of the
extremely cold weather forecast.
We just had a very in-depthfamily discussion about the
importance of layering ourclothing in order to help keep
us warm and healthy.
Obtaining Jacob's understandingand agreement to this concept
(09:24):
was no easy task.
We finally got his consent toinclude long-sleeved shirts over
turtlenecks in the layeringprocess.
When Jacob left for schooltoday, the temperature was well
below zero.
He was prepared.
He layered his clothing justthe way we talked about.
When Jacob arrived home fromschool, the temperature was a
mere five degrees.
(09:44):
We were horrified to see whathe was wearing under his coat.
Someone took it upon themselvesto remove Jacob's long-sleeved
shirt his second layer over hisnot-so-heavy turtleneck.
Not only is undressing ourchild without our permission
unacceptable, it also puts amajor damper on the progress we
(10:04):
made at home with our child inthe action of layering our
clothing.
If we say yes and the teacherssay no and proceed to undo what
we worked to create, that issending a very confusing message
to our son.
We need the entire schoolfaculty to receive the following
message, and of course this isin all bold capital, underlined
(10:24):
print under no circumstance is afaculty member or student to
remove clothing from our childwithout first obtaining our
verbal consent.
It goes on to read someoneshould have called us and told
us there was a problem and wewould have brought a different
shirt for him to wear.
We don't ever want to see Jacoblose his layers in this sort of
(10:47):
weather again.
If the school policies areagainst the artwork on Jacob's
shirts, the least you could havedone would be to turn it inside
out and allow him to still wearhis layers of clothing.
You have no right to decidewhat is warm enough for our
child.
Also, at the very least youcould have allowed him to wear
the shirt when he went outside.
(11:08):
We completely disapprove ofyour actions.
Hope you understand why.
So that was my first majorcommunication to this new school
.
So yes, we had many concerns.
You know he's very skinny.
He's always been skinny, almostlike POW skinny at times and
they say it's just because ofhis constant stimming.
He burns so many calories hejust can't keep anything on his
(11:29):
bones.
You know, with him being sick,all of that stuff, we had never
been in such a cold climatebefore.
The weather was so cold forthose first two years that the
wildlife died.
From there all the way up intoMinnesota, the wildlife was
dying because the winter was soharsh.
They didn't have anything,nothing to sustain them through
the winter.
It was terrible.
(11:49):
And they are sending my childhome with half of his clothes
off.
I was just pissed, obviously.
Here's the other thing.
You know, I taught Jacobsomething, right?
I love to empower my boy.
Before he went back to schoolthe next day I sat him down and
I taught him look, nobody takesJacob's clothes off at school.
You could tell he was upsetabout it too, because he lit up
(12:12):
instantly.
He knew I was getting ready toteach him something that he
could use.
I asked him who took the shirtoff and he said teacher.
So I taught him if you're, if ateacher or anyone, if anyone
touches you and tries to takeyour clothes off, this is what
you say.
I taught him to kind of put hisarm out to get arm's length
away.
Keep them away and startscreaming no teacher, that's a
bad teacher.
(12:32):
No teacher, that's a badteacher.
Bad, bad teacher.
And he loved that.
Of course, he loves yelling ateverybody.
I think he still knows thatlesson to this day.
But I have to teach him how towash his hands.
For 15 years I don't know.
So why was it such a nightmareto get him ready?
Well, of course we had the newshoes, where you know he has to
tie them, so we were pretty muchtasked with tying them, and if
(12:54):
it was snow then we had to gethis snowsuit and his boots and
all that.
We were teaching him how to getsome of that stuff on.
He could step into his snowsuit, okay, but the rest of it was
just kind of up in the air.
He really needed an adult tohelp him with that.
However, he was so miserablethat he just wouldn't cooperate.
He would come down the stairswhile I'm cooking in the dark
(13:15):
for him before I even have mycoffee, trying to get him a good
start to his day.
He would come down hissing andscreaming and just all kinds of
stuff.
So our first interaction everysingle weekday was I'm silently
cooking, he comes out of hisroom and he goes and does all
these terrible noises and I sayno, and every day that's how I
(13:35):
got to start my morning.
That would kick it off.
And then, after he ate, whichbecame more and more of a task
he was so depressed, I swear toGod, he was so depressed.
He didn't even like hisfavorite food anymore for a task
.
He was so depressed, I swear toGod, he was so depressed he
didn't even like his favoritefood anymore for a while.
He went from eating within anormal time frame to taking
forever to eat.
And now we're like, hey, yougot to hurry up, you got to get
(13:55):
ready, but now his pants arefalling off, he's not doing
anything, he wasn't cooperating.
I guess is what I should say,the funniest memory of all of
that.
I didn't think it was funny,but his dad thought it was
hilarious and since he did, here-delivered it to me after the
fact and it is pretty funny.
(14:16):
So Jake's running around notcooperating, his pants are
falling down because he didn'tput his belt on and this became
a thing.
He would either have his belton and then take it off, or I
don't know, but it just became athing every stupid day.
One day he was giving us so muchtrouble it was time to go.
I asked him he's, you know,just just pissed, not having it.
We're just not getting along atall.
And he wouldn't get this and hewouldn't get that, and he just,
he just would not cooperate.
(14:36):
So by the time it gets to theactual outerwear, I'm pissed and
I said, as he's coming down thestairs, I see that his shirt's
tucked in and he has no belt andhis pants are falling off.
And I said where is your belt?
I had already sent him upstairsthree times to put his belt on
and he comes downstairs no belt.
He says she's upstairs.
I said then go get her and hisdad.
(14:58):
He held it in really good.
But after Jacob left the house,his dad just lost it started
cracking up.
But that's the kind ofrelationship Jacob and I have
He'll give me shit and I'll giveit right back.
But yes, it was that kind ofthing.
He went from being a totallycooperative, loving, obedient
child to being this absolutenightmare.
Okay, now the school knowsabout the shirt and now he is
(15:22):
empowered to start yelling atthe teachers if they touch him
right.
So we call another IEP meeting.
Surprise, surprise.
We're saying hey, first of all,don't undress my kid.
I hope you got the notice.
Secondly, he's still very upseton the bus.
He's visibly crying when I seethe bus pull up.
What is going on?
And then that same idiot teacherthat forced him into that
(15:44):
situation at the assembly goeson to say at this meeting, new
information that seems to havebeen going on as long as school
has been in session, but shejust didn't think anything of it
until this particular day.
She says, oh well, there isthis girl that likes to sit by
him on the bus and she'll savehim a spot and she'll say hey,
jacob, come sit over here.
Well, that didn't sound too bad.
(16:05):
And she goes on to say I thinkmaybe she's you know, she's kind
of feeling like his big sister.
She wants to be a big sisterkind of energy for him and I
guess it can be a littleoverbearing.
Maybe he's seeing it asoverbearing or controlling.
She described a couple actions,I think, and we just said oh,
you mean a bully, you'recondoning a girl bullying our
(16:27):
son on the bus and you nevertold us about this.
He can't tell us why.
Why didn't you tell us?
So we go home and I go up tothe bus driver and I say that
girl is not to sit by that boyever.
Do you understand me?
I don't want them anywhere neareach other.
Can you please help us?
He has special needs and shedoes not care about him, she
(16:48):
doesn't know him at all and heis crying every day.
He gets off of your bus and Ithink you need to do something
about it.
Oh yeah, okay, sure, andthere's supposed to be a monitor
on the bus.
I don't know what the story waswith that.
They were separated for a fewdays.
He had been a little more calmduring the few days they were
separated.
Then they were not as separated.
(17:12):
They were really a lot closerthan they were before, but he
wasn't as pissed off.
He wasn't throwing himself orcrying at the time, but they
were pretty close.
And then the next day theirseats were even closer and I
said, hey, man, what are youdoing?
I don't want her by him.
And it became another IEPmeeting.
So now we're like okay, whydon't you do something to help
my kid stay away from that girl?
(17:33):
I don't want to go back towhere we were before.
And she says well, you know, Ihave both of them in two or
three I think she said three ofher classes.
I have both of them in threeclasses together and they sit
right next to each other andusually there's a partition
dividing each desk so that everystudent has their own private
cubbyhole.
But when they sit in my classtogether, I remove the partition
(17:54):
.
It is out of pure love and light, that I want to strangle this
woman when I hear this what thehell are you talking about?
Why would you do that?
You just told us two weeks agothat she was bullying my son and
that you've known about it allthis time.
And now we say we want themseparated, so you smush them
together.
Are you arranging a marriage?
(18:14):
What is wrong with you?
And she basically said well, Ireally don't care.
I don't think we got anythingresolved there.
They just they pretended yeah,okay, we'll, we'll try to do
what you say, but you have tounderstand our class isn't
always set up just to deal withhim.
And they started to tell usabout opportunities that were
coming and I kind of started tofeel like it was a carrot and
(18:36):
stick situation.
They started saying well, if hecan just get through this year,
halfway through next year,he'll be old enough to enter
into the life skills program.
And we're like, wow, what'sthat?
We had never heard of thisbefore.
And they said, oh well, there'sthis separate building in this
other town, you know about 10minutes away, and they would
take a special vehicle overthere for kids aged 15 to 21.
(19:00):
At the time in Wisconsin, theschool age for kids like ours
was 21.
So they could get school allthe way through their 21st year.
So we were like, oh wow, sixyears, that's awesome.
What is it?
And it turns out that it's aprogram where these kids go to
kind of like a house environmentand they learn how to do chores
(19:21):
and cooperate together and worka schedule together and they
start learning life skills undersupervision.
They have a whole setup so theycan make beds.
They could just do things.
At the time we didn't reallyhave a lot of dietary
restrictions going on, exceptfor the regular sugar and dyes
and stuff like that.
We weren't fully gluten-freefor him or anything like that.
So we weren't too afraid of himlearning things in an
(19:44):
environment like that.
In fact we were very optimisticthat this would happen for him
and we were really gettingexcited about okay, well, let's
just finish out the year here,because then he'll only have a
few months and as soon as theyare willing to accept him into
the program, he'll go into thatprogram for six years.
He'll have peers that he knows.
He'll have skills that he'sdeveloped.
(20:06):
He can really enjoy himself.
Because obviously school, theway that it's designed, is not
for our kids.
I don't think any of that stuffworks for kids like ours, and
it was almost like hey, put upwith our bullshit, because
here's this pie in the sky,there is a place that he's going
(20:31):
to be able to go and theschool's paying for it.
It is still schooling, but it'slife skills instead of academic
skills.
So great, awesome.
So now we're excited.
Then I'm going to say this hadto be.
I'm going to say it had to beFebruary when the final straw
happened.
Okay, and I know I told thisstory.
So this is the bath story.
(20:52):
I was giving him baths becausehe was so miserable and I just
wanted to give him somethingthat would make him feel
pampered.
We weren't able to get to thebottom of why he was so unhappy.
Despite all the meetings andall the corrective actions we
were trying to take witheverybody, he just didn't seem
to be getting any better, andthe only thing I knew that gave
(21:12):
him a little bit of happinessand nurturing were baths.
He loves my spa days with him,so I started bathing him almost
every day of the week just tohelp him relax and decompress
and feel pampered and loved.
I couldn't bear to try to teachhim how to bathe himself
anymore.
I just didn't want to make himwork for it anymore.
(21:33):
You know, there was only somuch I could do to make him feel
happy.
So I'm bathing him and I knowyou heard the story if you've
listened to my other episodes,so I'll go quick.
But I was cleaning behind hisears and he said ow, real small
and quiet, and it just instantlyI my heart dropped.
I thought I broke him.
I mean, that's always yourfirst thought, right?
Oh shit, I broke him.
Then I start checking him overhead to toe and I'm like did I
(21:55):
do that?
Was that me?
Did I hurt him?
And that's when he said teacher, hurts me ear.
And that's where I asked him toshow me what happened and he
was afraid to touch me.
And I told him to show me whathappened and he was afraid to
touch me and I told him it wasokay.
And he put his thumb andforefinger around the cartilage
of my ear and gave it a squeeze.
He looked like he was going tobe in trouble about it and he
never gets in trouble, like youknow.
So that really was sad anddamaging and alarming all at
(22:18):
once.
And I babied him even moreafter I learned that.
And then his dad.
I asked him to show his dad thenext morning because his dad
was at work at night.
He was afraid to do it to dadand we said it's okay.
And he did the same thing todad, but he squeezed his ear
harder.
We were just devastated.
So we decided to keep him homefor a couple of days.
We just called him in sick andwe didn't know what to do.
(22:39):
We were just beside ourselvesthat this would happen and he,
even though he had that historyof doing sneaky little things
like changing the message in thenotebook to make himself look
good and stuff, even though hehad done stuff like that, we
didn't feel that he was gonnajust make stuff up.
He's a pretty reliable source.
If he's talking and he's sayingthe words, then he must mean it
(23:01):
, it must be true.
We kept him home for a coupledays.
That was probably on.
I'm guessing that was on aWednesday, you know.
So we kept him home for therest of the week and then on
Monday I go to feed himbreakfast.
We're still talking about whatto do.
We had scheduled a meeting forthe coming week and we didn't
know what to do.
He's sitting at the table forbreakfast with his head in his
(23:21):
hand, and I have never seen himsit like this.
He's such a bubblyfive-year-old personality, even
at 13.
All the way to now, he's abubbly, vibrant five-year-old
personality when he's in hisbest form.
And that was gone.
His dad sometimes wasn't aroundto see it and I had to either
go grab him or record it forlater.
(23:44):
But my most memorable thing ofhis misery is him sitting at the
kitchen table with his head inhis hands and then just shaking
his head.
He has his eyes closed and helooked really grim and he was
just shaking his head in silenceand he just looked like, like,
like.
If he was neurotypical I wouldhave judged it, as he looks like
he has no one to talk to.
(24:06):
He looks like he has no support.
He looks like he thinks nobodycares and he's in this private
hell all by himself.
And it broke my heart as Iwatched him eat that morning.
I just decided that I couldn'tsend him to school and we ended
up keeping him.
Him to school and we ended upkeeping him.
(24:30):
So I know that, you know.
I know that we should haveprobably pursued a lawsuit or
something.
We didn't know what to.
I don't know, I don't have anywords.
Honestly, I can't defend ouractions.
All I can tell you is how wefelt about it, and here's how we
felt.
We didn't want him to sufferanymore.
We didn't want him to struggleto find the words or to not be
able to find the words at alland go through things that he
(24:50):
could not tell us about.
We didn't have access to anykind of spy cams.
We didn't trust the teachers tobe honest with us.
We knew that they already usedhis disability against him as,
oh, we can't communicate withhim.
We knew that this lying bitchat school was probably going to
continue to lie.
We knew that we were trying torun a business, still build the
business, keep our house afloat.
You know, if we missed one dayof work, there was a good chance
(25:13):
that we wouldn't eat for acouple of weeks because we were
in direct sales.
There was nothing else for us.
So we had to do it, and I was asignificant part of getting
those appointments.
That was my job, and then myspouse went out to sell at the
appointments.
We felt that we could either gothrough all of that and try to
find an attorney and try to suethe school district and try to
(25:34):
fight the fact that, no, hecan't talk all the time and no,
he doesn't have a great grasp onreality, and you know all the
things that they could possiblythrow in our faces.
We just decided that we justcouldn't send him back and we
ended up pulling him out ofschool.
So the next adventure willstart in my next episode.
I wanted to say I found out whatthe golf ball size, bruise and
(25:57):
welt was on his arm that Italked about a couple weeks ago.
He's biting himself now.
I know that might be normal forsome of you, but we've never
had that before.
I've never seen him do itanyway, and I've never seen bite
marks on him.
I did have one time where hisuncle's girlfriend's son was.
I don't know, he must have beenthree or four and my kid was
(26:17):
probably 10, but he's a veryaffectionate little guy, you
know, and when someone'ssnuggling up on him he just
leans into it and he giggles andhe laughs, and he doesn't know
anything but physical affection.
He doesn't know pain inflictedby others.
At that time he hadn't had hisear grabbed by a teacher yet.
He was younger.
But I stood there and watchedthis little boy come up and
(26:38):
start snuggling on my kid's backand my kid was like and this
little boy bit him in the back,was like and this little boy bit
him in the back.
I instantly start banging myfist on the window at these two
people that were supposed to beparenting this child and telling
them your kid just bit my sonand they didn't do anything
about it, but my kid's over herecrying.
He had never had a falseaffection before.
(27:01):
He thought he was getting love.
And then he gets bit and healmost drew blood.
I was so mad.
But now I'm seeing my kid bitehimself.
I couldn't believe it.
It was a Sunday.
I have some nerve Every Sunday.
I wake up thinking that this ismy day, like, oh, this is my
day to relax, I'm going to havea great morning, I'm going to
(27:22):
relax, I'm going to do what Iwant to do.
Just a couple fine Sundaymornings ago, the first thing he
did was the first thing he doesevery single Sunday, and I
apparently have trouble learningthese lessons right.
So he starts, he comesdownstairs, he doesn't have his
medicine, water, and he said I'msad.
First thing I'm sad.
And I said why are you sad?
(27:42):
And he says usually, you knowit'll be some bullshit.
He'll say, oh, spider-man, youknow, or whatever.
But this day he says I'm allalone, I want to go home.
And you know that hits me inthe heart.
Every time he says that, eitherone of those statements and he
said them both at once, it'slike he's got the key to me.
He knows, you know, but also Ithink he's just being honest.
(28:05):
As you know, we're not in agreat environment right now, but
I'm grateful for the roof wehave over our heads.
I'm grateful that we have, youknow, the walls around us.
We have heat, we have food, wehave everything that we need and
we have very little bills.
So that's exactly how we needit right now.
However, it is not the idealsituation, right, and I have to
always say, well, this is home.
(28:27):
So this time I said well, jacob, this is home, you're with
daddy and doll and papa andyou're not alone.
It will get better, I swear.
I promise it will get better,and it's really hard, you know,
but I really believe it's goingto get better, because I'm
taking all the steps that I knowhow to take to build something
for us and people like us,taking all the steps that I know
how to take to build somethingfor us and people like us.
(28:48):
Anyway, he takes two more tripsup and down the stairs to begin
his meltdown.
He doesn't melt down in onespot, it's all over the place.
Of course His dad's still inbed because it's Sunday and we
have some nerve, thinking we'regoing to chill.
He comes in just storming inand I know he's going right for
his dad and I didn't want him todo another startling dad
morning and get popped in thehead or the leg or something
(29:08):
because dad's sleeping and he'sgoing to scare the shit out of
him, right?
So I tried to hold him back andI usually don't try because I
don't know, I'm not good at it,but I tried to hold him back and
it did work enough to get himto try to turn around.
So then I grabbed his robe andI was like oh, come here, I want
to show you something.
And I was just getting hiscannabis medicine that he now
(29:28):
requires six hours earlier thanusual.
So I'm just holding onto hisrobe because he hasn't yet
learned to slip out of sleeves,while I'm holding onto his
outerwear, I have him watch meget the medicine.
So now he knows what we'redoing.
And we're going to go and havea shot of medicine and we get
into my living area.
And we're going to go and havea shot of medicine.
And we get into my living area.
(29:51):
He acts like he's calming down.
I pulled up the chair for himto sit next to me while I dose
it out.
He sits down and he psychs meout.
He had me thinking he was goingto take a deep breath, a yoga
breath, and he takes a deepbreath in and then he bites the
shit out of his arm right infront of me.
And I couldn't believe it.
And I'm not shocked.
I mean, I don't mean that Iexpect him to bite himself
outside of my vision.
I just mean that well damn, Ididn't know that you were going
to do that.
(30:11):
When did you start doing that?
I was horrified that he'sbiting himself.
Then he starts head punching.
He's punching his head, bitinghis arm and punching his head.
The punching his head has beengoing on for a few weeks, but
now he's biting Jeez.
And he also scratches the hellout of his face lately.
And he doesn't have any nailsthey're so short there are no
nails there.
But he I heard him in the tubthe other day.
(30:33):
He was seething.
I was downstairs.
He was in the tub upstairs andthat's kind of right above my
hallway and I could just hearhim making these awful noises,
sound like a werewolf orsomething up there.
We were like hey, calm down.
And when he got out of the tubhis head was just bleeding.
He just scratched the hell outof himself and that's the second
week in a row that he's donethat and I swear it's like he
(30:53):
has a day of the week for eachaction, but Sundays all the
actions get combined together.
So these are really fun.
And this has been going onSunday.
Nightmares have been going onsince about, I don't know, 2014,
2015.
And for some reason, I stillthink I have the right to have a
calm Sunday.
I don't know.
I can't get it through my head.
Apparently, he's got his plans.
(31:14):
You know, I don't know why Ican't conform to his plans.
Later on, after several moretrips.
Now, his dad is up.
He's up and down the stairs, upand down the stairs, he comes
to dad and he says I'm sad.
And his dad says did you seesomething?
Sad?
And Jacob said dad's dead.
And he kept saying dad's dead,dad's dead.
(31:38):
So he kept saying it and thenhe starts crying.
And then I asked him, jacob,was it a bad dream?
And now he's repeating baddream, bad dream, bad dream.
And he went from sobbing tolilting and skipping I love you,
dad, night, dad Love you.
I couldn't believe it.
And he does this all the timeand I just can't understand.
I'm still reeling from the wayI've been treated for the past
two hours that he's been awakeand he's running around skipping
(32:00):
and singing now in the blink ofan eye so as he skips off to
bed and puts himself down.
I started just kind of talkingto my spouse about the weekly
Sunday morning nightmare, how Ialways seem to just forget and
start my morning as if it's mineand my day to chill.
And then this shit happens allthe time, and I told him how,
(32:21):
just what I told you.
It's been going on since welived in Wisconsin.
Then I told him I said butmaybe today, though, maybe it
really was real.
Maybe it was all about a baddream.
Maybe he was really freaked out.
What if he dreamed that hisfamily was gone?
Maybe he really did dream thathe was all alone.
That would be devastating forsomeone like him, right?
(32:42):
I mean, he's not oblivious tothe fact that we are the only
people that take care of him andtreat him the way he wants to
be treated.
I mean, look back to ourmeeting when we picked him up
after his time with hisgrandparents and he collapsed in
my arms sobbing he knows wherehis bread is buttered.
And for him to dream that hisdad was dead and that he was all
(33:03):
alone.
I can imagine.
I can totally imagine how thatwould stick with him.
He's broody anyway.
I totally get it.
So I felt really bad for him.
And then I was telling my spouseabout how maybe having a
community of similar-mindedpeers might help him.
And then I second-guessed aboutthat and the insanity of this
idea that I have of wanting togroup all of these people
(33:27):
together in a community andexpect anything to be any better
.
I mean, we send him to summercamp with special needs people
and shit still happens, right,he's still slamming his head in
the wall and racking up billsand stuff.
But really I do believe in this, what I'm working on.
I do believe that having morelike-minded peers around him and
(33:50):
around me and you know, parentsand kids alike I think if we
had a community not necessarilyfull-time, but just if we need
respite, or you know our familyvacations if we had a place
where we could go that we knowis severe autism friendly, is
designed just for us and ourkids, I mean, could you imagine
(34:11):
what kind of vacation you wouldhave?
But I do constantly secondguess my sanity on this just
because of how hard it is for meto deal with him.
But really it's just aboutsupport and it's just.
I remember how secure he lookedlike he felt when we walked into
this camp that he goes to andhe knew right away that this was
(34:35):
a safe place for him.
He knew right away thateveryone there was special and
that all the adults there werevery in on it.
They were on his side, theywere supportive.
You know, he did not feelunsafe.
He felt like he was home.
I could see it all over him andI cried tears of joy to see
that.
Hey, I want to say also youremember how, last episode, I
(34:57):
said that I really didn't see aproblem with the online video
game shopping and all that stuffat the time.
Well, the follow-up to that isthat after the online video game
shopping, he later becameobsessed with sites like GameTop
I think it's not GameStop, Ithink it's - he calls it GameTub
, but I think it's GameTop andother sites like that.
(35:18):
He became obsessed Ever sincethat shopping spree online with
his grandma on Thanksgiving.
He just would not stop lookingat it and that became one of his
ramblings GameTop, gametop,gametop, gametop, gametop that's
all he would say.
You know, batman, batman,spider-man, spider-man, game top
(35:38):
, game top, just craziness.
Everything started goingdownhill from there with the
technology and the iPad andeverything.
So while I thought it was cuteand a bonding moment for the two
of them at the time, by thetime the next Thanksgiving came
around and she wanted to do thatagain.
I allowed it because she didn'tcome to see him very often, but
I really hated it because Iknew what was happening and I
knew that he had this OCD aboutit and I didn't want to make it
(35:59):
her problem.
I just had to leave the roomand let it happen and think,
well, I'll deal with it later,and I learned that that's not
really the right thing to do,not for my family situation.
I should have nipped it in thebud and said, hey look, this
isn't healthy for him.
I would rather that we break itup or do it a different way.
Maybe you could just talk to usabout some of the things and we
(36:22):
could give you a list and thenyou could just kind of narrow it
down and let him choose whichones, or something else.
Just do it a different way.
I really wish that I would havedone that, because allowing it
to happen just for the bondingand the once a year visit it
really wasn't worth it in thelong run for us, because it
sticks with him and it damageshim for the long haul.
(36:44):
That was a lesson I didn'texpect.
I don't know why.
I just you know, you learn alot about psychology of him the
psychology of your kid's makeup,right of him, the psychology of
your kid's makeup, right.
It was just a learning processand I just wish I would have
known, because by the secondtime that happened, he was
damaged, in my opinion, forever.
I mean, he just starteddeveloping these weird obsessive
(37:07):
behaviors and it was generallyaround the things that they
would look at together.
And I think it might have beenbecause, one, it was such a long
time spent on the iPad lookingat all of them.
But two, this stuff burns inhis brain and I think that it
really it just doesn't go away.
It kind of creates a new scriptfor him and it overshadows
(37:29):
everything that he knows,everything that he's learning,
and it just becomes hisobsession and it's super
unhealthy.
Well, in my next learning, andit just becomes his obsession
and it's super unhealthy.
Well, in my next episode, I mayjust have my next episode be
questions with dad, but it maycome later too.
So my next episode is eithergoing to be questions with his
father or a follow-up on thenext step that we took, and
(37:49):
we'll go from there.
And, by the way, I'm stilltrying to teach him how to wash
his hands properly, and westarted that in like 2014 or
before.
So, whatever you're stillteaching your kids, I wish you
luck in that.
You hang in there.
You're a superhero.
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