July 23, 2025 • 42 mins
I share our experience with the public school system when Jacob returned after a previous traumatic incident, revealing the challenges, frustrations, and occasional victories during this difficult period.
• The school promised an "adulting program" for independent living skills but Jacob never got to participate
• Jacob needed three-to-one support instead of one-to-one, which the school couldn't provide
• We struggled with getting consistent communication about Jacob's daily activities and behaviors
• School staff disregarded Jacob's dietary restrictions
• Jacob's therapists worked on skills at home that the school claimed he couldn't perform
• The special education director's accusations
• We eventually had to move and shut down our business because Jacob required more support than we could balance with work
• Regular public schools often lack the capacity to properly support children with severe autism
If you find these episodes helpful, please consider sharing this podcast and supporting it by clicking the "buy me a coffee" link to help keep it free for those who need it. You can reach me at contact.parentingsevereautism@gmail.com.
AngelSense GPS Monitoring Device Tracker For Kids, Teens, Elderly
View My Summer Supplies Shopping Cart!
iHerb supplies some of the safest summer products for sunscreen, bug screen, and stress management!
Therapressure Brush 6 Pack Latex Free
Special Supplies Sensory Brush for Occupational and Sensory Brushing 6 Pack Latex Free StimulateCalm
Magnesium Citrate Nervous System Support
NOW Foods - Magnesium Citrate Nervous System Support 400 mg. - 240 Vegetable Capsule(s) NOW Foods Ma
Organic Herbal Liquid Tinctures For You!
Mountain Rose Herbs supplies carefully formulated tinctures that fit in with our busy lifestyle.
Perfect Rhodiola Discounts for You
These are some of my favorite products - Organic with no fillers, no flow agents, and no synthetics.
Select a Size TV Screen Impact Protector
Heavy Duty. Extensively tested; will deflect any thrown remote control or a toy.
Organic Matcha Tea
I enjoy the calming and strengthening benefits of this tea.
Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.
https://www.buzzsprout.com/1989825/supporters/newhttps://psa.buzzsprout.com
Get Podcast Merch at the following link: https://psapodcast.creator-spring.com/
https://www.facebook.com/people/Parenting-Severe-Autism-podcast/100083292374893/
Email: contact.parentingsevereautism@gmail.com
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:18):
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
I hope that the sound of thisepisode is good.
I am using a new microphonecover and it's supposed to help
cover all the outside noise fromhere at the house, but I'm not
(00:39):
sure how it's going to turn out,so please bear with me if it's
messed up and we'll work it out.
In this episode I want to kindof walk you through the first
couple of months of Jacob'sreturn to school.
I'm going over notes from mymemory, then I'm going to share
with you a string of emailsbetween the staff at the school
(01:01):
and me, just to kind of give youa real - life idea of what
happens at school with a kidlike ours.
So first I want to mention thatthey told us about this
wonderful program that was kindof like an adulting program.
I think they had to be 18before they could go to this
(01:22):
other like place.
It was like a house or anapartment or something and they
told us that all the kids likeJacob who reached the proper age
get to get out of regularschool and go to this playhouse
type of situation where theylearn to work together and do
the chores, do the vacuuming andthe cleaning and the dishes and
(01:45):
how to make beds and just kindof live in this living situation
during the day but then stillcome home at night.
And it was really sounding goodto help him get away from us
and get out of school and getinto something more realistic
and more independent and seewhere he would really be if he
(02:06):
could have the freedom to dothat.
And, of course, it was going tobe completely supervised and
this was a working program as weunderstood it.
So the way that they presentedit to us, we really felt that it
was one of those things like ohwow, I really hope Jacob can be
good enough in school and stayin school long enough to be able
(02:26):
to get into this program.
You know it just it seemed likethey were dangling it in front
of us and expecting us to complywith things just so he could
stick around and get into thisprogram.
And with the history of ushaving to pull him out because
he was so miserable after beingabused, I kind of think that
(02:48):
maybe this was them grasping ata straw to get us to keep him in
school no matter what, becausethey knew it was important to us
that he develop some skills.
I kind of think they did usdirty on that.
The spoiler is that he nevergot to go into that program.
So there's that.
So a couple of quick notes onthe structure of our lives.
(03:11):
The therapy I was talking aboutafter school.
He got wise to it when Istarted making his snacks.
You know he would always comehome and get a snack and then
therapy would start after hissnack.
Well, he kind of got wise tothat pretty quickly and started
drawing out the amount of timeit took him to eat his food.
(03:31):
He's really slick like that,just all of a sudden.
Now it takes him an hour to eata tiny meal.
And then the therapists werekind of getting annoyed with me
for feeding him.
They finally asked me to stopgiving him his snack or to make
it smaller.
He is so crafty so I had tostop giving him food because
(03:51):
they weren't able to therapy him.
It was just amazing the thingsthat he can figure out and then
do and he always adjusts likethat.
I wish I could remember moreexact stories, but his dad and I
were constantly battling.
These things that you know,just shouldn't have happened,
like he was doing things and wewould do something to counter
(04:12):
that or to stop him from doingwhatever it was he was doing,
and he would find a way to adaptand overcome, and constantly.
And this thing with therapy andthe snack thing is exactly a
perfect example of that.
The school agreed to adopt thebehavior report sheets that were
supplied to me by thisinnovative counseling that I
(04:35):
told you about.
They didn't like the notebook,as you know, but they really
liked this other check-in sheetthat the counseling service
provided for us.
It had a range of smiley faceslike unhappy to happy and
everything in between, and forsome reason the teachers really
liked.
That Kind of makes me wonderabout the maturity of the
(04:56):
teachers at this point.
So they got to circle a boxthen write a description of why
they chose that face.
In my opinion it was actuallymore work for them, but you know
, whatever that's what made themhappy.
So then they decided to usethat instead of the notebook.
I've got a couple of emails I'mgoing to share with you about
(05:17):
stuff like this.
It's really ridiculous.
There were some adjustmentsmade at the school.
He used to have a sensory beanpod.
I tried to get one of those forhome for him, but since he was,
you know, 5'10 very quickly ata younger age, those are like
$400 or something like that.
It's really ridiculous.
(05:37):
So I couldn't get that for him.
But they had one at school.
Then all of a sudden I go tothe school one day and he's got
a glass enclosure.
I really didn't like it andthey were very proud of it, but
I felt like he was a zoo animaland he was on display.
You know he has to be in theclassroom with these other
(06:01):
children.
Then they build a glassenclosure around him in the
classroom.
I just really didn't agree withthat.
I felt like they were treatinghim like an animal.
Why do all of this?
Hey, that's great, thank youfor making the effort, but I
really didn't like it.
You know, just in captivity, ondisplay and put behind glass.
(06:23):
You know disruptions both waysled to him being put behind
glass and I absolutely hatedthat for him.
I don't ever want to walk inand see my child being kept like
a zoo animal.
I don't even like going to thezoo because of the captivity and
the sad conditions and I justreally really did not agree with
(06:44):
what was going on there and Inever did understand exactly why
they felt that was so necessary.
I don't know.
I don't know.
What is that?
Another thing I want to mentionis I've got an email I'm going
to share with you about lunch.
Once we started putting him backin school, we also sent his
lunches from home.
He was on that eat for yourblood type diet.
(07:06):
He was doing really well withthat and of course, he's gluten
free, sugar free and all thatcrap too, and most of the food
that they had at the school wasnot able to be consumed by our
son.
So I every day would make himsomething fresh.
He would either have homemadechicken soup or chicken salad or
(07:29):
a salad with chicken, tried tomix it up and keep it
interesting for him.
But I know what he likes and Iknow what makes him act right,
you know.
So we would send the foods withhim.
They were supposed to use thecontainers that I sent with him
as a cleaning exercise for him,for his little therapy that he
otherwise was not going to get.
(07:50):
We had already talked about it.
They said they would do it, butinstead they would send it home
like really nasty in a bag ofhis personal items, like they
would put it in a shopping bagand then put it open in the bag
with his personal items like hispillow and his blanket and an
extra change of clothes andstuff like that, and it's just
flopping around in there Justhad some really big issues with
(08:13):
the whole experience at theschool and I think that none of
this stuff would have happenedif they would have put him in a
proper environment in the firstplace, which means not a
mainstream classroom where theadults are spread so thin.
I mean, we came to realize Ithink I mentioned this before
that he actually needsthree-on-one, not one-on-one.
(08:37):
He needs three-on-one to helphim get through his day, but it
depends on who they are and howthey do it.
And it was just impossible.
They don't have enough paras,they don't have enough teachers,
they don't have enough ofanybody.
For a child like mine, andespecially if there are other
children kind of like mine, Imean this is a real problem.
(08:59):
Regular public school systemsdo not have the capacity to deal
with children like these.
So that's why I am adamant aboutthe Montessori type of
schooling, just adapted a littlebit more to the needs of each
child, because that is more ofan experience and an exploration
(09:21):
way of learning, because, let'sface it, my child is not going
to Harvard.
He is not going to work as amechanic or anything like that
at all.
He needs to be able to learn athis pace and learn what
interests him.
That's the only I mean.
He deserves to enjoy his life.
(09:42):
He deserves to enjoy theprocess of learning, and the
best way to do that is to justlet him discover what interests
him.
I really think that all of uscould benefit from that.
So I'm going to get into thefirst couple months of emails
that went back and forth betweenme and these teachers, and I
was sending every email to boththe advocate that was helping us
(10:05):
and the therapy service thatwas helping us.
So everyone was included andeveryone showed up at the IEPs.
It wasn't just us.
We finally had a team behind us, and as long as I was
forwarding emails and messagesand behaviors from the staff to
these other people, we barelyhad to do any real fighting
(10:29):
anymore as the parents.
So it was really, really nice.
After I read these emails, Iwant to share something cute
with you.
Of course, I've got two of them, and I might just keep one for
next week, just in case I don'tget another cute thing for a
while.
I don't get another cute thingfor a while.
So Jacob returned to school inthe fall of 2017.
And this was in Wisconsin, thesame school that he said hurt
(10:55):
his ear when the teacher pulledon his ear that this is where he
had to go back.
During the setup of this IEP,that was requested.
I referenced a message that Ihad sent to the special
education director before Jacobstarted school.
I mentioned that the specialeducation director was saying
that she didn't get it, so Isaid well, this is the email I
(11:16):
sent to her on September 1st.
Perhaps her email address haschanged.
I guess it's a little too latenow to make a difference, but
here it is.
The lady's name was Donna..
.
Hi, Donna, Since no meetingshad been scheduled with me prior
to the start of school, Iwanted to send an info email to
help everyone with Jacob for thefirst couple days of school
before the IEP meeting.
(11:36):
Jacob says he's very excited tostart school, so that's great.
Please let the teacher and thetherapists know the following
Jacob has been having a hardtime handling transitions this
summer.
You may notice him becomingprogressively more agitated on
the drive to school.
The closer you get to school,he's been showing very bad
behaviors for the first 45minutes into any transition
(11:58):
Screaming, crying, yelling,moaning, wailing, you name it.
The more we try to calm himdown, the worse it gets.
If you try to baby him andcomfort him, he'll do it even
worse.
Our best suggestion for this,if he is not able to be
immediately calmed down byrequesting him to calm down, is
to ask him if he needs you tocall his dad.
This has always worked since hewas young.
(12:20):
If he is really bad the firstday or two, you may consider
just calling his dad for thefirst time, without even telling
him, and then let them talk toeach other on the phone.
This will show Jacob that youmean business and you will do it
at any time.
His dad really calms him downon the phone and the reason he
will straighten up seems to bethat he just doesn't want his
(12:42):
dad to be disappointed in hisbehavior.
Here are some key phrases thatwe are currently using Do you
need to talk to dad?
Do you want me to call your dad?
I'm going to call your dad.
Calm is good.
Calm is better.
Happy is good.
Happy is better.
He must repeat these like amantra.
(13:03):
Also, jacob has taken tofeigning headaches when
confronted with something hedoesn't want to deal with.
As a precaution, I had himchecked out at the hospital.
There is no medical reason forhim to have headaches, so he is
only trying to play sick toavoid the activity or situation
Mainly therapies, tasks andmusic.
(13:24):
At this point, the parentadvocate that we are working
with has found that simplytelling him we're all done with
headaches has been working.
Jacob also is telling everyoneI love you all day long, like a
knee jerk.
Obviously, this isinappropriate and we let him
know all the time.
Rather than trying to explainlike versus love, etc.
(13:47):
We prefer to tell him stop itAll done.
Anything more than that justgoes right over his head and he
will not stop.
Lastly, jacob will need tobuild up mental stamina in order
to get through full dayssuccessfully.
He may require more frequentbreaks initially.
You'll have to use yourexpertise to figure that out.
He will take advantage of youif he thinks you're just trying
(14:10):
to make him happy.
I included a letter in Jacob'sregistration papers addressing
his food requirements etc.
I am attaching a copy for yourreview.
Jacob will be bringing hislunch daily.
This email will be copied tothe parent advocate.
Jacob's dad's phone number islisted below.
For all other communications,please use my phone number also
(14:31):
below.
So that's what I sent before heeven went back to school.
I thought that was a prettydecent thing to do.
The first email I have is Iemailed his teacher saying that
Jacob seems very obsessed withletting me know that he was
yelling at his teachers today.
He can't tell me anything elseabout his day except that he was
(14:55):
yelling at his teachers.
Do you know if something likethis happened and the teacher
says, hi, nothing of that sorthappened today.
He seemed to have a great day.
We went to the store and he wasamazing no repetition and very
helpful.
Not sure where that is comingfrom, so that was kind of
telling me that maybe he wantedto yell at the teacher.
(15:17):
This never developed intoanything else after that.
But the next one is a little bitdisturbing to me because of the
way that I, I, um, I complainedabout this in an earlier
episode about how his halfsister likes putting words in
his mouth and telling him to saythings and how I really, really
(15:39):
don't like that.
So this is kind of like that.
This one disturbed me becausethey weren't listening to him.
He didn't have a lot of wordsanyway.
He had already lost hisvocabulary of whatever it was
100 words or 150 words, maybe.
Anything that came out of hismouth I consider to be gold at
this point.
So it started out with thismessage from me: Hey, I just
(16:02):
wanted to give you a heads up.
We've noticed that the behavioryou described from Thursday
basically happens every fullmoon.
I double-checked the calendarand, sure enough, Thursday was
the full moon.
The next one is November 4th, Ibelieve, and you should just
expect him to be off, emotional,needy, strange and unable to
function very well on these days.
And the teacher writes back: Okay, that's good to know. (16:23):
undefined
I just felt really bad for him.
I spent a lot of time with himtoday and he seemed very happy.
We had some nice conversationsabout his dog Buddy.
It was a really good day.
He also played the game Farklewith a couple of kids and had a
(16:43):
great time.
He also played the game Farklewith a couple of kids and had a
great time.
So I replied, I know sometimesit's hard to understand his
speech.
He named his dog Doggy, notBuddy, and she says, oh, he said
Doggy was his name.
I just didn't think that washis name.
I thought that he must besaying Buddy, good to know,
thanks.
So I don't know, maybe I wasjust overreacting, but I'm still
(17:09):
pissed off when I read that.
I'm very fucking pissed offabout that because he said it
and she says, oh, that can't behis name.
Well, why not?
Why not?
Why are you going to rename hisdog now?
Now, my kid's confused becauseyou have decided that the dog's
name is Buddy in the sameconversation that he's trying to
(17:30):
tell you the dog's name isDoggy, and I don't know.
It just really irritated thehell out of me.
So then I got a message fromthe art teacher that she wanted
to know if it was okay to enterone of Jacob's art pieces in an
art contest at the publiclibrary.
The contest is about making artwith books, and Jacob was in
(17:51):
the art room the other day andcolored some pages of a book and
she mounted them on black paperand then he colored around
those too and she felt it was avery nice abstract art piece.
So I thought that was reallysweet.
Jacob did not always get artclass because of the transition
(18:11):
period and the noise.
I think it was right next tothe music class and they tried
to get him into the music.
He didn't really like it.
His dad and I introduced him tothe timpanis and we thought
that he would like that.
But you know, I guess it's just.
It's just not a goodenvironment for him.
So art and music, we felt wouldbe very nice for him to
(18:33):
participate in, but the way itwas laid out at the school, plus
the transition timing, neverreally worked out.
So for him to be in the artclass and create something was
pretty cool.
It's interesting because therewas one time well, there were
several times where the schoolwould send home art that he
(18:54):
quote unquote made, but it wasway too good.
I knew that my kid did not makethis art.
There was one that was nothingbut little dots in different
colors from a marker and it wasthe perfect picture of our yard
and our house and our fire pitand our driveway and everything.
It was perfect, it wasabsolutely perfect.
(19:15):
It was so beautiful and I wishthat he had made that.
I know that he has a greatpictographic memory, if that's
what you want, if that's whatyou call it, but damn it.
I know he didn't make that.
I thought it was nice thoughfor him for them to include an
actual piece of his art and callit art, when he actually drew
on a book I don't know it was.
(19:35):
It was kind of cool.
I then wanted to let them know,and I never did hear back from
the school on this.
But there was a book that weacquired over the summer of that
year called Read Aloud Rhymesfor the Very Young.
I sent that over to the teacherand told them we acquired this
book over the summer and Jacobreally enjoys reading this book
(19:56):
more than any other book I'veseen or heard him read.
He seems to really understandsome of the stories and he reads
aloud very enthusiastically.
Usually when he reads it's verymonotone and it all runs
together and it doesn't soundlike he's absorbing it.
He knows how to read and makethe sounds of the letters fit
(20:19):
together and work, but itdoesn't mean that he's actually
absorbing what he's reading.
But in that particular book,read Aloud Rhymes for the Very
Young, it seemed like heactually was absorbing the story
, understanding the story.
I think he liked the artwork aswell.
Maybe that'll help someone outthere.
(20:39):
And then here's the thing aboutthe lunches.
I first asked this is still inOctober of 2017, does the
cafeteria have soup bowls?
I would like to send some soup,but I don't have any bowls that
I could send.
She says no, they do not.
I figured it out, you know, gothim a thermos with the cup on
it and also sent a bigTupperware bowl just in case,
(21:01):
because I don't know, you know,and they sent it home sloppy,
wet, leaking in his bag withthings that he is supposed to
cuddle up with and sleep with.
So I was a little pissed offand I emailed and said okay, I
know that there are multiplesinks throughout the building
and I see no reason for Jacob tobe bringing home these
(21:23):
extremely dirty dishes from hislunch.
I didn't say anything before.
Apparently, it's happened inthe past.
I didn't say anything beforebecause they were small snack
dishes, but this was an openbowl that had chicken soup in it
and, considering the fact thatyou have him learning living
skills on a daily basis, heshould definitely be bringing
home clean dishes.
(21:44):
And she says I am sorry thathis soup dish came back dirty.
We will make sure that he isrising his dishes after he eats,
as far as being able to washthem on a daily basis would be a
goal to work towards.
Currently, he is only able todry the dishes with multiple
prompts.
We will work on hisindependence in washing and
(22:04):
hopefully this is a skill hewill be able to obtain in the
near future.
Now, something they may not haveknown is that the therapists
that were coming to the housewere always working on him being
able to rinse his snack plate.
It was just a little plate, youknow.
He was definitely able to foolthe teachers at the school
because the therapists wereworking on that with him every
(22:26):
day.
So I don't, I don't know, butit was really stupid.
I think that was really stupidof them to do and very
disrespectful to his belongings.
There was something about handwashing, but I can't access it
anymore.
I think it was pictures of himwashing his hands and I still
can't get him to wash his handsproperly.
He's 24.
So I don't know what that wasabout.
(22:47):
Okay, so then they send one.
The teacher says hi.
I want to let you know thatJacob was scratching his face a
bit.
After he was asked to walk inthe hallway quietly.
I stopped the behavior and hecomplied.
He is taking a break now.
I replied please let him seeyou writing it in the notebook.
And then there was one where Iasked the special education
(23:10):
director to send a copy of hisIEP and then I sent that to both
the parent advocate and thetherapist that was coming to the
house and told them to pleasenote the third page, 2a and 2C
family engagement, handlingconcerns with sleep patterns and
notebook for dailycommunications.
(23:30):
We feel that these are beingdisregarded blatantly, and that
was just in preparation for anew IEP meeting that was being
called.
And then there's a really longstring of like 15 emails where I
started it with hi.
We would really appreciatehaving daily updates in Jacob's
(23:50):
notebook, at least concerninghis demeanor and behaviors for
each day.
It has always helped him.
He's always been proud to bringhome a good report and unhappy
to bring home a report that hebehaved badly.
It also helps us to understandhim better at home.
We also feel that it would benice to know what he's involved
with each day.
(24:10):
We understand that you are busy, but we'd still like to know
what's going on at school withour special needs child, Just to
try to remind her that you knowhe may be in a mainstream
classroom, but he is not amainstream kid and we need these
updates.
So she says I understand yourconcerns and I will try and
write in it when I can.
(24:31):
Today and most of the week hehas been very off Today and most
of the week he has been veryoff.
So this was on a Thursday thatshe said this and this is why
you know I hadn't gotten reportsfor the whole week.
This is why this whole thingstarted, she says, and if he
(25:00):
seems to be getting upset, hehas been expressing that he is
tired and falls asleep duringhis break before lunch.
He has been working on add andsubtracting money, learning the
quantity of numbers by buildingthem with base 10 blocks.
He has been counting money andbeginning to learn how to make
change by figuring out how manypennies in a nickel dime and
(25:22):
quarter.
We work on budgeting bydetermining if you have enough
money for a given item.
I've never seen him do that inreal life.
He doesn't seem to give a shitabout money, so that's my note.
He has been working on readingwith a social skills curriculum.
I have noticed he does notattend to all of the visual
information and will makeguesses on words based on how
(25:45):
they visually look, so he makeserrors with words that look
similar.
He is able to identify two outof three emotions after reading
a passage.
He also reads books that hepicks from the library, works on
Raz Kids and uses MobiMax asreading intervention tools.
He worked on laundry skillsshredding silverware, rolling,
(26:08):
washing his own dishes andsorting.
Gloria asked him to put on hishat and gloves and he refused to
put on his hat.
I want to remind you that ourwinters there were sustained
temperatures of 26 below zero.
That was not the wind chill,that was the temperature in the
winter.
So this was in the beginning ofNovember, so it wasn't quite
(26:31):
that cold yet.
But with our child it's habitthat we're trying to form.
We want him to put on his hatbecause when it counts he will
be doing it already.
Anyway, I replied to her.
Your first paragraph is aperfect example of something
important enough to tell usabout immediately.
We don't want Jacob harminghimself, and this is something
(26:53):
that should cause an immediatephone call to his father, as
explained in our first lettersubmitted to the school.
Also, you may not be aware, butI know that the special
education director is aware thatlast year he was having sleep
trouble.
So, again, the info about himbeing so tired that he falls
asleep daily before lunch isinfo that we need to know,
(27:15):
capital letters.
As far as his hat, he is achild and does not decide
whether he wears it.
He may need help putting it onbecause it is a face mask being
used as a hat to cover his ears.
As I explained before, he has aweaker immune system.
He also has Raynaud's and hemust be kept warm.
If we cannot count on the adultsat school to take care of our
(27:37):
son while he is there, we needto be informed of this because
it's unacceptable and we willhave to seek alternatives.
Our child is unable tocommunicate effectively with
anyone on a regular basis.
We should have as much opencommunication between us as
possible, because it's inJacob's best interest.
It's extremely hard to knowwhat's eating him or to figure
(28:01):
out why he's behaving a certainway, etc.
When he spends most of the dayaway from home under someone
else's care.
If you don't personally havethe time to immediately inform
us of these things that we knoware extremely important, we ask
that you find someone else whocan we appreciate the work that
you have lined up for him.
It's just that academics isonly half the battle, thank you.
(28:24):
And then the special educationdirector steps in and says I
believe we need to meet, eitherinformally or for an IEP, to
address and resolve some of theissues that have been brought to
my attention.
The school district isdedicated to providing Jacob
with an education in astimulating environment with
appropriate care.
(28:45):
While several of your concernsare understandable, many
incidents of accusatory languagehave also been noted when
communicating with school thisyear.
Please be aware that we are,and should, be very limited in
our response to Jacob's refusals.
We need to meet and develop aplan to address these issues.
Please respond with availabledates.
(29:07):
So I just want to say that Ihave already shared with you all
of the emails that have goneback and forth, and this
particular email from thisparticular woman started a huge,
huge fight, because I don'tknow of any incidents of
accusatory language, manyincidents of accusatory language
(29:30):
when communicating with school.
That year it had only beenactually less than a month,
because this is done on November9th.
So I've already shared with youeverything that I said and I
don't think the language isaccusatory.
I think it's concerned, I thinkit's valid, but we ended up
going to an IEP and I demandedto know which emails they were
(29:56):
talking about that wereaccusatory, and they refused to
tell me anything at all.
I thought that was really cute.
So the teacher responds andsays Okay, I will be in touch
with any further issues and letyou know when he is tired I will
most likely email instead ofwriting in the notebook.
Please know that the scratchingoccurred yesterday once.
(30:16):
It was not hard enough to leavea mark and it was stopped right
away.
We are doing our best to helphim.
Please let me know times anddates you can meet in person.
I said I will let you know oncethe advocate lets me know her
availability.
I know you're trying to help.
We feel that we're missing outon a cooperative effort if
adults at school don't informadults at home of what's going
(30:37):
on.
There's nothing accusatory here, just facts.
And then I found a string ofemails that I am the one
organizing between the teacherand the special education
director.
I'm the go-between what aboutthis day at this time?
And then one would say, no, Ican't do that one.
And then I'd say another day intime.
And then the teacher would say,yeah, I can do it, but I don't
(30:59):
know about the other lady.
So then I email the other lady.
Hey, the teacher said this dayin time is good, are you
available and which building arewe going?
And then I mean just back andforth and for some reason I
became the one that wasarranging all of this stuff.
I didn't even like I don't evenremember that, but that was
kind of messed up.
Okay, so here's some stuff justto let you know some of the
(31:21):
activities, something about abreak.
And came back once he stoppedthe movies, which I believe he
was just scripting movies.
He added money with threeprompts, took a sensory break,
then washed his hands, stillneeded prompts to scrub before
he rinses, which is still what'sgoing on to this day.
All other steps are independent.
Read chapter of the river tohim.
(31:42):
While he was on break, workedon identifying personal
information, stockingtoothbrushes.
He was sorting the kids and theadults, the soft, medium and
firm.
And that's where the that'swhat it was, where the shop
class made him a little caddy orsomething in order to help him
stock and sort toothbrushes.
And for lunch he ate his soupand washed his dishes out.
(32:05):
He washed the lunch tables withone of his aides and had a
sensory break with a rockingchair and Christmas music.
He worked on grocery storeflyers, needed some prompts to
keep going.
I don't know what that is.
Independent reading and then abreak with snow.
They have that.
I don't know if you're familiarwith that, but it's some kind
(32:26):
of weird concoction they makeand it's like a slime, but it's
a snow slime or something.
Now here's one of my favoritesto finish out the 2017 part of
school.
I don't know if any of you arefamiliar with people being
gluten-free for health reasons.
Some people are so sensitivethat they cannot even touch
(32:47):
items that have gluten in themand they have to use separate
cookware.
They can't even cook theirgluten-free food in any cookware
that's ever touched gluten food.
So this string of emails hereis actually very irresponsible
on the school's part.
It's also really freaking rude.
(33:08):
The teacher emails me onDecember 22nd, just a few days
after his birthday.
Hi, jacob frosted cookies inhis general education classroom.
They do not fit his foodrequirements.
Do you want us to send themhome, have him eat one or just
give them to someone else?
So I said somebody else canhave them, and good luck with
(33:34):
that, because now I mean, howdoes your kid act.
Have you ever had your kid withsevere autism work with a piece
of food and then tell them theycan't eat it, especially a
fucking cookie, come on man.
So she says, okay, we just toldhim that they needed to dry and
we couldn't eat them.
I will give him a couplecrackers instead.
(33:55):
And then I just forwarded all ofthat to the therapists and the
advocate and I just said what ajerky thing to do to this kid.
What a jerky thing to do tothis kid.
Why would you do that to my kid?
I mean now see, this issomething I deal with all the
time and it really pisses me off.
People come over here and theybring food and then instantly I
(34:18):
have to go and superhero my waythrough the rest of my day
because now I don't want my kidto feel left out.
I've had relatives come overand then leave the house and go
get ice cream cakes from DairyQueen.
My kid can't eat that shit.
So what do I have to do whilethey're gone getting their ice
cream cake?
I got to figure something outreal quick.
I have to make somethingamazing so that my kid doesn't
(34:39):
feel left out, and it's reallysomething when they already have
his list of things that hecannot deal with.
And then they they get him allthe way up to the line and then
they're like, oh thanks, sorry,you don't get any.
I mean, what the fuck?
That really irritates me.
So, anyway, that is the firsttwo months of emails.
(35:00):
That goes from October 3rd toDecember 22nd of 2017.
During that time, I was fightingwith the school in person in
the stupid IEP meetings, askingthem to show me the evidence of
the several instances ofaccusatory language that made it
(35:21):
seem that the special eddirector herself had to tell me
about myself, and they neverwere able to produce anything
and they refused to produce anyproof.
And the teacher wouldn't evenlook at me.
The special ed director onlywanted to sidestep and talk
(35:41):
about getting my kid on drugs.
So that was the next battle.
We still were holding ourground that we didn't want him
on pharmaceuticals until he wasmore developed.
That's a decision that someparents in our position make.
That was where we were at, andshe kept deciding to tell us
that you know, have you thoughtabout medicine for him?
(36:02):
And we would tell her ourposition.
And she said one time well, youknow, sometimes it's not the
first time that you try it, andit's not the first medicine that
you try, but you have to gothrough a whole different range
of medicines until you find aperfect cocktail that really
works.
I mean, look at me, and she hadrheumatoid arthritis really bad
(36:26):
in her hands and she's like I'mon five different medicines and
without them I wouldn't be ableto be here today and I was just
like what you have is anautoimmune condition and what
you need to do is address yourdiet and your gut.
Don't tell me that drugs aresaving your life, and I should
(36:47):
take that to heart for my ownkid.
The fuck's wrong with you.
Anyway, in my next episode Iwill wrap up with the rest of
the emails from the time that wewere there.
We had to move.
We had to shut our businessdown.
The thing is that Jacob was soout of hand and hard to deal
(37:07):
with that it was affecting ourbusiness.
Our business was sufferinganyway because the products that
we sold were becoming availableon the internet and the company
was not protecting us the waythat they said they were.
Every time they saw a product,they were supposed to remove it
and buy it or whatever, but theyweren't doing that and we were
(37:28):
struggling in that respect, butalso the amount of time Jacob
was taking from me.
It had just snowballed into,you know, because I was working
on the phone with clients andsetting up new clients and stuff
, and setting up new clients andstuff, and setting appointments
for the near future and out,and the less time I was able to
(37:48):
work on that, the more itaffected our business in the
long run, not necessarily theshort run.
I mean, I could see ithappening and I was trying to
keep up, but the psychologicaldamage I endured was so bad I
was unable to do my job and Iwas unable to put the hours in
(38:09):
because of the hours he ended upneeding from me.
It was just a terrible,terrible situation.
Wisconsin was by far the bestenvironment for him because of
the list and the therapies andeverything that was working in
his favor, and after theseemails, we ended up having to
leave.
We left in April of 2018, andwe had to come here and things
(38:33):
got really, really fucked upafter that.
So, a couple episodes from now,I'm going to start giving you
that type of information of whathe went through, what we all
went through when we moved here,but in my next episode I'll
share with you the rest of ourexperience with the school in
Wisconsin.
That was the only thing thatwasn't good was the school
(38:53):
itself.
Everything else was great.
I want to share something withyou.
There's a cute little story.
I have, my spouse, picked up acouple obsidian rocks from this
little place down the road thatwe go to.
We take Jacob there formassages and we buy incense and
stuff like that.
So these rocks are calledsnowflake obsidian and they're a
little bit different,energetically, than regular
(39:15):
obsidian.
So if you're into that, youknow you'll understand what I'm
saying.
But my spouse carries his rockwith him all the time.
I keep mine near my bed.
He was driving Jacob to day campthe other day and he gave it to
Jacob and was trying to justeducate him and keep him engaged
and do all the great thingsthat he does as his dad.
So he explained to Jacob, asJacob was holding the rock, what
(39:38):
it was during the ride to camp.
He says this is snowflakeobsidian.
Was during the ride to camp.
He says this is snowflakeobsidian.
It's made by a volcano thatgets instantly cooled off by the
ocean and you know, blah, blah,blah.
He told him all about this rock.
Later on he was telling me thatJacob held on to this rock all
(40:00):
day.
When he was putting Jacob downfor a nap after camp, he noticed
that Jacob still had the rockin his hand.
Now this camp day was a daywhen he went to the local water
park and all this stuff.
You know, that's why we sendhim to camp.
He held on to that rock all daythrough all of those activities
and my spouse had, I guess,written it off.
(40:20):
He was like, well, I'llprobably never see that rock
again, because he didn't realizethat Jacob kept it until he had
already dropped him off at campand gotten home.
He's putting Jacob down for anap and he sees it in his hand.
And he was like, oh wow, youstill have that rock.
And he started asking himquestions and he said how is
this rock made?
Where does it come from?
At first Jacob was like, uh,you know, and then his dad said
(40:43):
from a volcano and then Jacobsaid ocean.
So he remembered the story.
It was really neat.
You know he doesn't have allthe words, but he kept it all
day and he remembered the storyand I thought that was really
cool.
Also in my next episode.
I want to tell you about anaccusation that came about my
child from the school, so we'llget into that in the next one
(41:04):
and I'm hoping that this stuffwill help you prepare for future
years in school, depending onthe age of your kiddo right now
and, you know, just give yousome insight, maybe some hope
about things like that adultingclass that was supposed to
happen.
You know they are supposed tohave stuff like that for our
(41:26):
kids.
My kid never got to do anythingcool like that.
They didn't let him finishschool, but I just I'm hoping
that this gets your wheelsturning, helps you understand
some of the stuff that mighthappen while your kid is in
school.
Some of it's good, some of it'snot so great, but these are
some of the activities that areactually planned for our kids
(41:48):
when they're in the specialeducation classroom and some of
the things that happen whenthey're forced into the
mainstream classroom.
Thank you so much for listening.
If any of these episodes sparksomething in you, make you happy
, make you cry or anything likethat, please consider sharing my
episode, sharing theinformation about my podcast.
(42:08):
You can always support thepodcast and help it stay free
for those who need it byclicking the buy me a coffee
link, and you can also find someof my affiliate links for
products that work for ourfamily at the end of all my
episodes.
And, of course, if you have anyinput, I would love to hear
from you and you can reach me atcontactparentingsevereautism at
(42:32):
gmailcom.
Hang in there, you're asuperhero.
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
I hope that the sound of thisepisode is good.
I am using a new microphonecover and it's supposed to help
cover all the outside noise fromhere at the house, but I'm not
(00:39):
sure how it's going to turn out,so please bear with me if it's
messed up and we'll work it out.
In this episode I want to kindof walk you through the first
couple of months of Jacob'sreturn to school.
I'm going over notes from mymemory, then I'm going to share
with you a string of emailsbetween the staff at the school
(01:01):
and me, just to kind of give youa real - life idea of what
happens at school with a kidlike ours.
So first I want to mention thatthey told us about this
wonderful program that was kindof like an adulting program.
I think they had to be 18before they could go to this
(01:22):
other like place.
It was like a house or anapartment or something and they
told us that all the kids likeJacob who reached the proper age
get to get out of regularschool and go to this playhouse
type of situation where theylearn to work together and do
the chores, do the vacuuming andthe cleaning and the dishes and
(01:45):
how to make beds and just kindof live in this living situation
during the day but then stillcome home at night.
And it was really sounding goodto help him get away from us
and get out of school and getinto something more realistic
and more independent and seewhere he would really be if he
(02:06):
could have the freedom to dothat.
And, of course, it was going tobe completely supervised and
this was a working program as weunderstood it.
So the way that they presentedit to us, we really felt that it
was one of those things like ohwow, I really hope Jacob can be
good enough in school and stayin school long enough to be able
(02:26):
to get into this program.
You know it just it seemed likethey were dangling it in front
of us and expecting us to complywith things just so he could
stick around and get into thisprogram.
And with the history of ushaving to pull him out because
he was so miserable after beingabused, I kind of think that
(02:48):
maybe this was them grasping ata straw to get us to keep him in
school no matter what, becausethey knew it was important to us
that he develop some skills.
I kind of think they did usdirty on that.
The spoiler is that he nevergot to go into that program.
So there's that.
So a couple of quick notes onthe structure of our lives.
(03:11):
The therapy I was talking aboutafter school.
He got wise to it when Istarted making his snacks.
You know he would always comehome and get a snack and then
therapy would start after hissnack.
Well, he kind of got wise tothat pretty quickly and started
drawing out the amount of timeit took him to eat his food.
(03:31):
He's really slick like that,just all of a sudden.
Now it takes him an hour to eata tiny meal.
And then the therapists werekind of getting annoyed with me
for feeding him.
They finally asked me to stopgiving him his snack or to make
it smaller.
He is so crafty so I had tostop giving him food because
(03:51):
they weren't able to therapy him.
It was just amazing the thingsthat he can figure out and then
do and he always adjusts likethat.
I wish I could remember moreexact stories, but his dad and I
were constantly battling.
These things that you know,just shouldn't have happened,
like he was doing things and wewould do something to counter
(04:12):
that or to stop him from doingwhatever it was he was doing,
and he would find a way to adaptand overcome, and constantly.
And this thing with therapy andthe snack thing is exactly a
perfect example of that.
The school agreed to adopt thebehavior report sheets that were
supplied to me by thisinnovative counseling that I
(04:35):
told you about.
They didn't like the notebook,as you know, but they really
liked this other check-in sheetthat the counseling service
provided for us.
It had a range of smiley faceslike unhappy to happy and
everything in between, and forsome reason the teachers really
liked.
That Kind of makes me wonderabout the maturity of the
(04:56):
teachers at this point.
So they got to circle a boxthen write a description of why
they chose that face.
In my opinion it was actuallymore work for them, but you know
, whatever that's what made themhappy.
So then they decided to usethat instead of the notebook.
I've got a couple of emails I'mgoing to share with you about
(05:17):
stuff like this.
It's really ridiculous.
There were some adjustmentsmade at the school.
He used to have a sensory beanpod.
I tried to get one of those forhome for him, but since he was,
you know, 5'10 very quickly ata younger age, those are like
$400 or something like that.
It's really ridiculous.
(05:37):
So I couldn't get that for him.
But they had one at school.
Then all of a sudden I go tothe school one day and he's got
a glass enclosure.
I really didn't like it andthey were very proud of it, but
I felt like he was a zoo animaland he was on display.
You know he has to be in theclassroom with these other
(06:01):
children.
Then they build a glassenclosure around him in the
classroom.
I just really didn't agree withthat.
I felt like they were treatinghim like an animal.
Why do all of this?
Hey, that's great, thank youfor making the effort, but I
really didn't like it.
You know, just in captivity, ondisplay and put behind glass.
(06:23):
You know disruptions both waysled to him being put behind
glass and I absolutely hatedthat for him.
I don't ever want to walk inand see my child being kept like
a zoo animal.
I don't even like going to thezoo because of the captivity and
the sad conditions and I justreally really did not agree with
(06:44):
what was going on there and Inever did understand exactly why
they felt that was so necessary.
I don't know.
I don't know.
What is that?
Another thing I want to mentionis I've got an email I'm going
to share with you about lunch.
Once we started putting him backin school, we also sent his
lunches from home.
He was on that eat for yourblood type diet.
(07:06):
He was doing really well withthat and of course, he's gluten
free, sugar free and all thatcrap too, and most of the food
that they had at the school wasnot able to be consumed by our
son.
So I every day would make himsomething fresh.
He would either have homemadechicken soup or chicken salad or
(07:29):
a salad with chicken, tried tomix it up and keep it
interesting for him.
But I know what he likes and Iknow what makes him act right,
you know.
So we would send the foods withhim.
They were supposed to use thecontainers that I sent with him
as a cleaning exercise for him,for his little therapy that he
otherwise was not going to get.
(07:50):
We had already talked about it.
They said they would do it, butinstead they would send it home
like really nasty in a bag ofhis personal items, like they
would put it in a shopping bagand then put it open in the bag
with his personal items like hispillow and his blanket and an
extra change of clothes andstuff like that, and it's just
flopping around in there Justhad some really big issues with
(08:13):
the whole experience at theschool and I think that none of
this stuff would have happenedif they would have put him in a
proper environment in the firstplace, which means not a
mainstream classroom where theadults are spread so thin.
I mean, we came to realize Ithink I mentioned this before
that he actually needsthree-on-one, not one-on-one.
(08:37):
He needs three-on-one to helphim get through his day, but it
depends on who they are and howthey do it.
And it was just impossible.
They don't have enough paras,they don't have enough teachers,
they don't have enough ofanybody.
For a child like mine, andespecially if there are other
children kind of like mine, Imean this is a real problem.
(08:59):
Regular public school systemsdo not have the capacity to deal
with children like these.
So that's why I am adamant aboutthe Montessori type of
schooling, just adapted a littlebit more to the needs of each
child, because that is more ofan experience and an exploration
(09:21):
way of learning, because, let'sface it, my child is not going
to Harvard.
He is not going to work as amechanic or anything like that
at all.
He needs to be able to learn athis pace and learn what
interests him.
That's the only I mean.
He deserves to enjoy his life.
(09:42):
He deserves to enjoy theprocess of learning, and the
best way to do that is to justlet him discover what interests
him.
I really think that all of uscould benefit from that.
So I'm going to get into thefirst couple months of emails
that went back and forth betweenme and these teachers, and I
was sending every email to boththe advocate that was helping us
(10:05):
and the therapy service thatwas helping us.
So everyone was included andeveryone showed up at the IEPs.
It wasn't just us.
We finally had a team behind us, and as long as I was
forwarding emails and messagesand behaviors from the staff to
these other people, we barelyhad to do any real fighting
(10:29):
anymore as the parents.
So it was really, really nice.
After I read these emails, Iwant to share something cute
with you.
Of course, I've got two of them, and I might just keep one for
next week, just in case I don'tget another cute thing for a
while.
I don't get another cute thingfor a while.
So Jacob returned to school inthe fall of 2017.
And this was in Wisconsin, thesame school that he said hurt
(10:55):
his ear when the teacher pulledon his ear that this is where he
had to go back.
During the setup of this IEP,that was requested.
I referenced a message that Ihad sent to the special
education director before Jacobstarted school.
I mentioned that the specialeducation director was saying
that she didn't get it, so Isaid well, this is the email I
(11:16):
sent to her on September 1st.
Perhaps her email address haschanged.
I guess it's a little too latenow to make a difference, but
here it is.
The lady's name was Donna..
.
Hi, Donna, Since no meetingshad been scheduled with me prior
to the start of school, Iwanted to send an info email to
help everyone with Jacob for thefirst couple days of school
before the IEP meeting.
(11:36):
Jacob says he's very excited tostart school, so that's great.
Please let the teacher and thetherapists know the following
Jacob has been having a hardtime handling transitions this
summer.
You may notice him becomingprogressively more agitated on
the drive to school.
The closer you get to school,he's been showing very bad
behaviors for the first 45minutes into any transition
(11:58):
Screaming, crying, yelling,moaning, wailing, you name it.
The more we try to calm himdown, the worse it gets.
If you try to baby him andcomfort him, he'll do it even
worse.
Our best suggestion for this,if he is not able to be
immediately calmed down byrequesting him to calm down, is
to ask him if he needs you tocall his dad.
This has always worked since hewas young.
(12:20):
If he is really bad the firstday or two, you may consider
just calling his dad for thefirst time, without even telling
him, and then let them talk toeach other on the phone.
This will show Jacob that youmean business and you will do it
at any time.
His dad really calms him downon the phone and the reason he
will straighten up seems to bethat he just doesn't want his
(12:42):
dad to be disappointed in hisbehavior.
Here are some key phrases thatwe are currently using Do you
need to talk to dad?
Do you want me to call your dad?
I'm going to call your dad.
Calm is good.
Calm is better.
Happy is good.
Happy is better.
He must repeat these like amantra.
(13:03):
Also, jacob has taken tofeigning headaches when
confronted with something hedoesn't want to deal with.
As a precaution, I had himchecked out at the hospital.
There is no medical reason forhim to have headaches, so he is
only trying to play sick toavoid the activity or situation
Mainly therapies, tasks andmusic.
(13:24):
At this point, the parentadvocate that we are working
with has found that simplytelling him we're all done with
headaches has been working.
Jacob also is telling everyoneI love you all day long, like a
knee jerk.
Obviously, this isinappropriate and we let him
know all the time.
Rather than trying to explainlike versus love, etc.
(13:47):
We prefer to tell him stop itAll done.
Anything more than that justgoes right over his head and he
will not stop.
Lastly, jacob will need tobuild up mental stamina in order
to get through full dayssuccessfully.
He may require more frequentbreaks initially.
You'll have to use yourexpertise to figure that out.
He will take advantage of youif he thinks you're just trying
(14:10):
to make him happy.
I included a letter in Jacob'sregistration papers addressing
his food requirements etc.
I am attaching a copy for yourreview.
Jacob will be bringing hislunch daily.
This email will be copied tothe parent advocate.
Jacob's dad's phone number islisted below.
For all other communications,please use my phone number also
(14:31):
below.
So that's what I sent before heeven went back to school.
I thought that was a prettydecent thing to do.
The first email I have is Iemailed his teacher saying that
Jacob seems very obsessed withletting me know that he was
yelling at his teachers today.
He can't tell me anything elseabout his day except that he was
(14:55):
yelling at his teachers.
Do you know if something likethis happened and the teacher
says, hi, nothing of that sorthappened today.
He seemed to have a great day.
We went to the store and he wasamazing no repetition and very
helpful.
Not sure where that is comingfrom, so that was kind of
telling me that maybe he wantedto yell at the teacher.
(15:17):
This never developed intoanything else after that.
But the next one is a little bitdisturbing to me because of the
way that I, I, um, I complainedabout this in an earlier
episode about how his halfsister likes putting words in
his mouth and telling him to saythings and how I really, really
(15:39):
don't like that.
So this is kind of like that.
This one disturbed me becausethey weren't listening to him.
He didn't have a lot of wordsanyway.
He had already lost hisvocabulary of whatever it was
100 words or 150 words, maybe.
Anything that came out of hismouth I consider to be gold at
this point.
So it started out with thismessage from me: Hey, I just
(16:02):
wanted to give you a heads up.
We've noticed that the behavioryou described from Thursday
basically happens every fullmoon.
I double-checked the calendarand, sure enough, Thursday was
the full moon.
The next one is November 4th, Ibelieve, and you should just
expect him to be off, emotional,needy, strange and unable to
function very well on these days.
And the teacher writes back: Okay, that's good to know. (16:23):
undefined
I just felt really bad for him.
I spent a lot of time with himtoday and he seemed very happy.
We had some nice conversationsabout his dog Buddy.
It was a really good day.
He also played the game Farklewith a couple of kids and had a
(16:43):
great time.
He also played the game Farklewith a couple of kids and had a
great time.
So I replied, I know sometimesit's hard to understand his
speech.
He named his dog Doggy, notBuddy, and she says, oh, he said
Doggy was his name.
I just didn't think that washis name.
I thought that he must besaying Buddy, good to know,
thanks.
So I don't know, maybe I wasjust overreacting, but I'm still
(17:09):
pissed off when I read that.
I'm very fucking pissed offabout that because he said it
and she says, oh, that can't behis name.
Well, why not?
Why not?
Why are you going to rename hisdog now?
Now, my kid's confused becauseyou have decided that the dog's
name is Buddy in the sameconversation that he's trying to
(17:30):
tell you the dog's name isDoggy, and I don't know.
It just really irritated thehell out of me.
So then I got a message fromthe art teacher that she wanted
to know if it was okay to enterone of Jacob's art pieces in an
art contest at the publiclibrary.
The contest is about making artwith books, and Jacob was in
(17:51):
the art room the other day andcolored some pages of a book and
she mounted them on black paperand then he colored around
those too and she felt it was avery nice abstract art piece.
So I thought that was reallysweet.
Jacob did not always get artclass because of the transition
(18:11):
period and the noise.
I think it was right next tothe music class and they tried
to get him into the music.
He didn't really like it.
His dad and I introduced him tothe timpanis and we thought
that he would like that.
But you know, I guess it's just.
It's just not a goodenvironment for him.
So art and music, we felt wouldbe very nice for him to
(18:33):
participate in, but the way itwas laid out at the school, plus
the transition timing, neverreally worked out.
So for him to be in the artclass and create something was
pretty cool.
It's interesting because therewas one time well, there were
several times where the schoolwould send home art that he
(18:54):
quote unquote made, but it wasway too good.
I knew that my kid did not makethis art.
There was one that was nothingbut little dots in different
colors from a marker and it wasthe perfect picture of our yard
and our house and our fire pitand our driveway and everything.
It was perfect, it wasabsolutely perfect.
(19:15):
It was so beautiful and I wishthat he had made that.
I know that he has a greatpictographic memory, if that's
what you want, if that's whatyou call it, but damn it.
I know he didn't make that.
I thought it was nice thoughfor him for them to include an
actual piece of his art and callit art, when he actually drew
on a book I don't know it was.
(19:35):
It was kind of cool.
I then wanted to let them know,and I never did hear back from
the school on this.
But there was a book that weacquired over the summer of that
year called Read Aloud Rhymesfor the Very Young.
I sent that over to the teacherand told them we acquired this
book over the summer and Jacobreally enjoys reading this book
(19:56):
more than any other book I'veseen or heard him read.
He seems to really understandsome of the stories and he reads
aloud very enthusiastically.
Usually when he reads it's verymonotone and it all runs
together and it doesn't soundlike he's absorbing it.
He knows how to read and makethe sounds of the letters fit
(20:19):
together and work, but itdoesn't mean that he's actually
absorbing what he's reading.
But in that particular book,read Aloud Rhymes for the Very
Young, it seemed like heactually was absorbing the story
, understanding the story.
I think he liked the artwork aswell.
Maybe that'll help someone outthere.
(20:39):
And then here's the thing aboutthe lunches.
I first asked this is still inOctober of 2017, does the
cafeteria have soup bowls?
I would like to send some soup,but I don't have any bowls that
I could send.
She says no, they do not.
I figured it out, you know, gothim a thermos with the cup on
it and also sent a bigTupperware bowl just in case,
(21:01):
because I don't know, you know,and they sent it home sloppy,
wet, leaking in his bag withthings that he is supposed to
cuddle up with and sleep with.
So I was a little pissed offand I emailed and said okay, I
know that there are multiplesinks throughout the building
and I see no reason for Jacob tobe bringing home these
(21:23):
extremely dirty dishes from hislunch.
I didn't say anything before.
Apparently, it's happened inthe past.
I didn't say anything beforebecause they were small snack
dishes, but this was an openbowl that had chicken soup in it
and, considering the fact thatyou have him learning living
skills on a daily basis, heshould definitely be bringing
home clean dishes.
(21:44):
And she says I am sorry thathis soup dish came back dirty.
We will make sure that he isrising his dishes after he eats,
as far as being able to washthem on a daily basis would be a
goal to work towards.
Currently, he is only able todry the dishes with multiple
prompts.
We will work on hisindependence in washing and
(22:04):
hopefully this is a skill hewill be able to obtain in the
near future.
Now, something they may not haveknown is that the therapists
that were coming to the housewere always working on him being
able to rinse his snack plate.
It was just a little plate, youknow.
He was definitely able to foolthe teachers at the school
because the therapists wereworking on that with him every
(22:26):
day.
So I don't, I don't know, butit was really stupid.
I think that was really stupidof them to do and very
disrespectful to his belongings.
There was something about handwashing, but I can't access it
anymore.
I think it was pictures of himwashing his hands and I still
can't get him to wash his handsproperly.
He's 24.
So I don't know what that wasabout.
(22:47):
Okay, so then they send one.
The teacher says hi.
I want to let you know thatJacob was scratching his face a
bit.
After he was asked to walk inthe hallway quietly.
I stopped the behavior and hecomplied.
He is taking a break now.
I replied please let him seeyou writing it in the notebook.
And then there was one where Iasked the special education
(23:10):
director to send a copy of hisIEP and then I sent that to both
the parent advocate and thetherapist that was coming to the
house and told them to pleasenote the third page, 2a and 2C
family engagement, handlingconcerns with sleep patterns and
notebook for dailycommunications.
(23:30):
We feel that these are beingdisregarded blatantly, and that
was just in preparation for anew IEP meeting that was being
called.
And then there's a really longstring of like 15 emails where I
started it with hi.
We would really appreciatehaving daily updates in Jacob's
(23:50):
notebook, at least concerninghis demeanor and behaviors for
each day.
It has always helped him.
He's always been proud to bringhome a good report and unhappy
to bring home a report that hebehaved badly.
It also helps us to understandhim better at home.
We also feel that it would benice to know what he's involved
with each day.
(24:10):
We understand that you are busy, but we'd still like to know
what's going on at school withour special needs child, Just to
try to remind her that you knowhe may be in a mainstream
classroom, but he is not amainstream kid and we need these
updates.
So she says I understand yourconcerns and I will try and
write in it when I can.
(24:31):
Today and most of the week hehas been very off Today and most
of the week he has been veryoff.
So this was on a Thursday thatshe said this and this is why
you know I hadn't gotten reportsfor the whole week.
This is why this whole thingstarted, she says, and if he
(25:00):
seems to be getting upset, hehas been expressing that he is
tired and falls asleep duringhis break before lunch.
He has been working on add andsubtracting money, learning the
quantity of numbers by buildingthem with base 10 blocks.
He has been counting money andbeginning to learn how to make
change by figuring out how manypennies in a nickel dime and
(25:22):
quarter.
We work on budgeting bydetermining if you have enough
money for a given item.
I've never seen him do that inreal life.
He doesn't seem to give a shitabout money, so that's my note.
He has been working on readingwith a social skills curriculum.
I have noticed he does notattend to all of the visual
information and will makeguesses on words based on how
(25:45):
they visually look, so he makeserrors with words that look
similar.
He is able to identify two outof three emotions after reading
a passage.
He also reads books that hepicks from the library, works on
Raz Kids and uses MobiMax asreading intervention tools.
He worked on laundry skillsshredding silverware, rolling,
(26:08):
washing his own dishes andsorting.
Gloria asked him to put on hishat and gloves and he refused to
put on his hat.
I want to remind you that ourwinters there were sustained
temperatures of 26 below zero.
That was not the wind chill,that was the temperature in the
winter.
So this was in the beginning ofNovember, so it wasn't quite
(26:31):
that cold yet.
But with our child it's habitthat we're trying to form.
We want him to put on his hatbecause when it counts he will
be doing it already.
Anyway, I replied to her.
Your first paragraph is aperfect example of something
important enough to tell usabout immediately.
We don't want Jacob harminghimself, and this is something
(26:53):
that should cause an immediatephone call to his father, as
explained in our first lettersubmitted to the school.
Also, you may not be aware, butI know that the special
education director is aware thatlast year he was having sleep
trouble.
So, again, the info about himbeing so tired that he falls
asleep daily before lunch isinfo that we need to know,
(27:15):
capital letters.
As far as his hat, he is achild and does not decide
whether he wears it.
He may need help putting it onbecause it is a face mask being
used as a hat to cover his ears.
As I explained before, he has aweaker immune system.
He also has Raynaud's and hemust be kept warm.
If we cannot count on the adultsat school to take care of our
(27:37):
son while he is there, we needto be informed of this because
it's unacceptable and we willhave to seek alternatives.
Our child is unable tocommunicate effectively with
anyone on a regular basis.
We should have as much opencommunication between us as
possible, because it's inJacob's best interest.
It's extremely hard to knowwhat's eating him or to figure
(28:01):
out why he's behaving a certainway, etc.
When he spends most of the dayaway from home under someone
else's care.
If you don't personally havethe time to immediately inform
us of these things that we knoware extremely important, we ask
that you find someone else whocan we appreciate the work that
you have lined up for him.
It's just that academics isonly half the battle, thank you.
(28:24):
And then the special educationdirector steps in and says I
believe we need to meet, eitherinformally or for an IEP, to
address and resolve some of theissues that have been brought to
my attention.
The school district isdedicated to providing Jacob
with an education in astimulating environment with
appropriate care.
(28:45):
While several of your concernsare understandable, many
incidents of accusatory languagehave also been noted when
communicating with school thisyear.
Please be aware that we are,and should, be very limited in
our response to Jacob's refusals.
We need to meet and develop aplan to address these issues.
Please respond with availabledates.
(29:07):
So I just want to say that Ihave already shared with you all
of the emails that have goneback and forth, and this
particular email from thisparticular woman started a huge,
huge fight, because I don'tknow of any incidents of
accusatory language, manyincidents of accusatory language
(29:30):
when communicating with school.
That year it had only beenactually less than a month,
because this is done on November9th.
So I've already shared with youeverything that I said and I
don't think the language isaccusatory.
I think it's concerned, I thinkit's valid, but we ended up
going to an IEP and I demandedto know which emails they were
(29:56):
talking about that wereaccusatory, and they refused to
tell me anything at all.
I thought that was really cute.
So the teacher responds andsays Okay, I will be in touch
with any further issues and letyou know when he is tired I will
most likely email instead ofwriting in the notebook.
Please know that the scratchingoccurred yesterday once.
(30:16):
It was not hard enough to leavea mark and it was stopped right
away.
We are doing our best to helphim.
Please let me know times anddates you can meet in person.
I said I will let you know oncethe advocate lets me know her
availability.
I know you're trying to help.
We feel that we're missing outon a cooperative effort if
adults at school don't informadults at home of what's going
(30:37):
on.
There's nothing accusatory here, just facts.
And then I found a string ofemails that I am the one
organizing between the teacherand the special education
director.
I'm the go-between what aboutthis day at this time?
And then one would say, no, Ican't do that one.
And then I'd say another day intime.
And then the teacher would say,yeah, I can do it, but I don't
(30:59):
know about the other lady.
So then I email the other lady.
Hey, the teacher said this dayin time is good, are you
available and which building arewe going?
And then I mean just back andforth and for some reason I
became the one that wasarranging all of this stuff.
I didn't even like I don't evenremember that, but that was
kind of messed up.
Okay, so here's some stuff justto let you know some of the
(31:21):
activities, something about abreak.
And came back once he stoppedthe movies, which I believe he
was just scripting movies.
He added money with threeprompts, took a sensory break,
then washed his hands, stillneeded prompts to scrub before
he rinses, which is still what'sgoing on to this day.
All other steps are independent.
Read chapter of the river tohim.
(31:42):
While he was on break, workedon identifying personal
information, stockingtoothbrushes.
He was sorting the kids and theadults, the soft, medium and
firm.
And that's where the that'swhat it was, where the shop
class made him a little caddy orsomething in order to help him
stock and sort toothbrushes.
And for lunch he ate his soupand washed his dishes out.
(32:05):
He washed the lunch tables withone of his aides and had a
sensory break with a rockingchair and Christmas music.
He worked on grocery storeflyers, needed some prompts to
keep going.
I don't know what that is.
Independent reading and then abreak with snow.
They have that.
I don't know if you're familiarwith that, but it's some kind
(32:26):
of weird concoction they makeand it's like a slime, but it's
a snow slime or something.
Now here's one of my favoritesto finish out the 2017 part of
school.
I don't know if any of you arefamiliar with people being
gluten-free for health reasons.
Some people are so sensitivethat they cannot even touch
(32:47):
items that have gluten in themand they have to use separate
cookware.
They can't even cook theirgluten-free food in any cookware
that's ever touched gluten food.
So this string of emails hereis actually very irresponsible
on the school's part.
It's also really freaking rude.
(33:08):
The teacher emails me onDecember 22nd, just a few days
after his birthday.
Hi, jacob frosted cookies inhis general education classroom.
They do not fit his foodrequirements.
Do you want us to send themhome, have him eat one or just
give them to someone else?
So I said somebody else canhave them, and good luck with
(33:34):
that, because now I mean, howdoes your kid act.
Have you ever had your kid withsevere autism work with a piece
of food and then tell them theycan't eat it, especially a
fucking cookie, come on man.
So she says, okay, we just toldhim that they needed to dry and
we couldn't eat them.
I will give him a couplecrackers instead.
(33:55):
And then I just forwarded all ofthat to the therapists and the
advocate and I just said what ajerky thing to do to this kid.
What a jerky thing to do tothis kid.
Why would you do that to my kid?
I mean now see, this issomething I deal with all the
time and it really pisses me off.
People come over here and theybring food and then instantly I
(34:18):
have to go and superhero my waythrough the rest of my day
because now I don't want my kidto feel left out.
I've had relatives come overand then leave the house and go
get ice cream cakes from DairyQueen.
My kid can't eat that shit.
So what do I have to do whilethey're gone getting their ice
cream cake?
I got to figure something outreal quick.
I have to make somethingamazing so that my kid doesn't
(34:39):
feel left out, and it's reallysomething when they already have
his list of things that hecannot deal with.
And then they they get him allthe way up to the line and then
they're like, oh thanks, sorry,you don't get any.
I mean, what the fuck?
That really irritates me.
So, anyway, that is the firsttwo months of emails.
(35:00):
That goes from October 3rd toDecember 22nd of 2017.
During that time, I was fightingwith the school in person in
the stupid IEP meetings, askingthem to show me the evidence of
the several instances ofaccusatory language that made it
(35:21):
seem that the special eddirector herself had to tell me
about myself, and they neverwere able to produce anything
and they refused to produce anyproof.
And the teacher wouldn't evenlook at me.
The special ed director onlywanted to sidestep and talk
(35:41):
about getting my kid on drugs.
So that was the next battle.
We still were holding ourground that we didn't want him
on pharmaceuticals until he wasmore developed.
That's a decision that someparents in our position make.
That was where we were at, andshe kept deciding to tell us
that you know, have you thoughtabout medicine for him?
(36:02):
And we would tell her ourposition.
And she said one time well, youknow, sometimes it's not the
first time that you try it, andit's not the first medicine that
you try, but you have to gothrough a whole different range
of medicines until you find aperfect cocktail that really
works.
I mean, look at me, and she hadrheumatoid arthritis really bad
(36:26):
in her hands and she's like I'mon five different medicines and
without them I wouldn't be ableto be here today and I was just
like what you have is anautoimmune condition and what
you need to do is address yourdiet and your gut.
Don't tell me that drugs aresaving your life, and I should
(36:47):
take that to heart for my ownkid.
The fuck's wrong with you.
Anyway, in my next episode Iwill wrap up with the rest of
the emails from the time that wewere there.
We had to move.
We had to shut our businessdown.
The thing is that Jacob was soout of hand and hard to deal
(37:07):
with that it was affecting ourbusiness.
Our business was sufferinganyway because the products that
we sold were becoming availableon the internet and the company
was not protecting us the waythat they said they were.
Every time they saw a product,they were supposed to remove it
and buy it or whatever, but theyweren't doing that and we were
(37:28):
struggling in that respect, butalso the amount of time Jacob
was taking from me.
It had just snowballed into,you know, because I was working
on the phone with clients andsetting up new clients and stuff
, and setting up new clients andstuff, and setting appointments
for the near future and out,and the less time I was able to
(37:48):
work on that, the more itaffected our business in the
long run, not necessarily theshort run.
I mean, I could see ithappening and I was trying to
keep up, but the psychologicaldamage I endured was so bad I
was unable to do my job and Iwas unable to put the hours in
(38:09):
because of the hours he ended upneeding from me.
It was just a terrible,terrible situation.
Wisconsin was by far the bestenvironment for him because of
the list and the therapies andeverything that was working in
his favor, and after theseemails, we ended up having to
leave.
We left in April of 2018, andwe had to come here and things
(38:33):
got really, really fucked upafter that.
So, a couple episodes from now,I'm going to start giving you
that type of information of whathe went through, what we all
went through when we moved here,but in my next episode I'll
share with you the rest of ourexperience with the school in
Wisconsin.
That was the only thing thatwasn't good was the school
(38:53):
itself.
Everything else was great.
I want to share something withyou.
There's a cute little story.
I have, my spouse, picked up acouple obsidian rocks from this
little place down the road thatwe go to.
We take Jacob there formassages and we buy incense and
stuff like that.
So these rocks are calledsnowflake obsidian and they're a
little bit different,energetically, than regular
(39:15):
obsidian.
So if you're into that, youknow you'll understand what I'm
saying.
But my spouse carries his rockwith him all the time.
I keep mine near my bed.
He was driving Jacob to day campthe other day and he gave it to
Jacob and was trying to justeducate him and keep him engaged
and do all the great thingsthat he does as his dad.
So he explained to Jacob, asJacob was holding the rock, what
(39:38):
it was during the ride to camp.
He says this is snowflakeobsidian.
Was during the ride to camp.
He says this is snowflakeobsidian.
It's made by a volcano thatgets instantly cooled off by the
ocean and you know, blah, blah,blah.
He told him all about this rock.
Later on he was telling me thatJacob held on to this rock all
(40:00):
day.
When he was putting Jacob downfor a nap after camp, he noticed
that Jacob still had the rockin his hand.
Now this camp day was a daywhen he went to the local water
park and all this stuff.
You know, that's why we sendhim to camp.
He held on to that rock all daythrough all of those activities
and my spouse had, I guess,written it off.
(40:20):
He was like, well, I'llprobably never see that rock
again, because he didn't realizethat Jacob kept it until he had
already dropped him off at campand gotten home.
He's putting Jacob down for anap and he sees it in his hand.
And he was like, oh wow, youstill have that rock.
And he started asking himquestions and he said how is
this rock made?
Where does it come from?
At first Jacob was like, uh,you know, and then his dad said
(40:43):
from a volcano and then Jacobsaid ocean.
So he remembered the story.
It was really neat.
You know he doesn't have allthe words, but he kept it all
day and he remembered the storyand I thought that was really
cool.
Also in my next episode.
I want to tell you about anaccusation that came about my
child from the school, so we'llget into that in the next one
(41:04):
and I'm hoping that this stuffwill help you prepare for future
years in school, depending onthe age of your kiddo right now
and, you know, just give yousome insight, maybe some hope
about things like that adultingclass that was supposed to
happen.
You know they are supposed tohave stuff like that for our
(41:26):
kids.
My kid never got to do anythingcool like that.
They didn't let him finishschool, but I just I'm hoping
that this gets your wheelsturning, helps you understand
some of the stuff that mighthappen while your kid is in
school.
Some of it's good, some of it'snot so great, but these are
some of the activities that areactually planned for our kids
(41:48):
when they're in the specialeducation classroom and some of
the things that happen whenthey're forced into the
mainstream classroom.
Thank you so much for listening.
If any of these episodes sparksomething in you, make you happy
, make you cry or anything likethat, please consider sharing my
episode, sharing theinformation about my podcast.
(42:08):
You can always support thepodcast and help it stay free
for those who need it byclicking the buy me a coffee
link, and you can also find someof my affiliate links for
products that work for ourfamily at the end of all my
episodes.
And, of course, if you have anyinput, I would love to hear
from you and you can reach me atcontactparentingsevereautism at
(42:32):
gmailcom.
Hang in there, you're asuperhero.
Popular Podcasts
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.