August 6, 2025 • 62 mins
Shannon continues sharing emails between herself and her son Jacob's teachers in Wisconsin, revealing the challenges of advocating for a child with severe autism in the school system.
• Ongoing battles with teachers about using food as a motivator despite Shannon's opposition due to potential eating disorders and specific dietary restrictions
• Frustration with teachers repeatedly asking for guidance already provided in Shannon's comprehensive instruction letter
• Teachers demonstrating defensiveness when Shannon suggests someone might be "unwittingly" triggering Jacob's behaviors
• Failed experiment with CBD oil
• Safety concerns with school van driver
• Hilarious and endearing story about Jacob shaving
• Recent breakthrough moment
• Importance of scheduling IEPs as often as needed and bringing advocates to meetings
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:18):
Hello and welcome to the Parenting Severe Autism
podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
This is another episode ofTeaching the Teachers from while
we were in Wisconsin.
We had such a time and, to behonest, it didn't get any better
once we left.
That was the very best statefor us to have him in, in my
(00:42):
opinion, although we haven'tbeen to a lot of other states,
Illinois has been even worse,but we still have emails to
share from January of 2018through March and then in April.
Unfortunately, we had to packup and leave Wisconsin.
Please remember, if thisepisode or any of my episodes
(01:03):
touches you in any way, makesyou laugh or cry or makes you
mad or anything like that,please remember to share this
podcast with anyone you can, inany way that you can.
If you have comments or want toshare your experiences, if any
of the things I talk about ringsa bell for you and you want to
say something and let me knowwhat happened on your end with
(01:26):
something, please feel free todrop me an email.
That would becontactparentingsevereautism at
gmailcom.
And, of course, you can alwaysclick the buy me a coffee or
support the show icon and donateto help keep this free for
those who need it.
I'm trying to get up to athousand downloads a month and
(01:48):
I've got quite a ways to go.
But the more that you share anddiscuss and all of that, the
better chance I have.
And what happens?
When I get a thousand downloadsa month, I get to buy
advertising to reach more people.
It just buys me some spots onother podcasts, but I'm trying
to get a team effort heretogether, here at home between
(02:10):
me and my husband posting on allthe socials and hopefully that
will help as well.
Okay, so we're continuing withthe fight about the food.
I never agreed with using foodas a tool.
I just there's too many casesof eating disorders and OCD
(02:31):
around food and it's just, in myopinion, it is not a healthy
method.
So that's why I'm alwaysfighting with the teachers about
using food.
I think that they couldprobably use other things if
they would just open their mindsa little bit.
I just don't want people usingfood to influence my child.
I just don't, I just don't.
And I think that we should havethat right as parents, because
(02:55):
you know you're training him toevery he's not going to do
anything good unless you givehim a freaking cookie, and it's
not fair.
I don't want to live that way.
I don't want to live that way.
So I don't want my childfocused on food and even though
we have had that fight for allthese years, my child is focused
on food.
(03:15):
I have some stories to sharewith you about that.
I mean, it gets really, reallybad and it's just his own thing,
his own hyper focus, and it'sjust his own thing, his own
hyper focus, whatever on food.
It's terrible, and I'm so gladthat I did not allow an entire
lifestyle built around foodmotivators, because it's bad
enough just the way it is.
(03:36):
I just want to get right intothese emails because it's just
really the best illustration ofwhat was going on in the
communication and the teachingstyle and the mindset and
everything.
So I just want to get throughthese and I may drop some
comments here and there, but theteacher wrote it looks like on
a Monday morning, January 8th,Hi, I hope you had a nice
(03:59):
weekend.
My first question is if I wantto use a cutie as a question is
if I want to use a cutie as amanipulative, could he eat it or
would an apple be okay, we areworking on identifying fractions
.
If not, he wouldn't have to eatthem or I can find something
else to use.
Second, I wanted to let youknow that he is having a very
(04:19):
hard time stopping the self-talkand movies.
He keeps reciting Batman andother movies.
I have redirected, had him takea break and wrote in the
notebook.
My next step is to call his dadhave a great day.
Please forgive me with myreading.
My contact lenses are messed upand I can hardly see my stupid
(04:43):
screen.
I'm doing the best I can hereNow.
As you know, I had a food testdone on all of us, and oranges
is one of the things he cannotdigest and I used to feed it to
him all the time.
I felt horrible when I realizedthat almost every food I was
feeding him was not able to bedigested and what kind of pain
that was probably causing, andhe can't tell me.
(05:05):
But the lady who did the testexplained to me what happens
when we eat something we cannotdigest.
So he doesn't have the enzymesfor certain foods.
Oranges and bananas are two ofthose foods and he used to eat
those all the time.
So we did end up switching toapples.
Okay.
So my response was Jacob cannotdigest oranges.
(05:26):
I think grapes or organicapples are okay and of course
they're not going to go do that.
But yes, we are sticklers forthat because of all the
chemicals, as you know, we don'tallow any food dyes or any kind
of pesticides or herbicides orany of that stuff.
We are completely organic andyou know we're just doing the
(05:49):
best we can.
He's already polluted, I meanthat's you know.
Look at him.
So he has to deal with thatevery day and I'm just doing
everything I can to keep himfrom getting more buildup in his
body.
So we are very strict aboutwhat he eats buildup in his body
.
So we are very strict aboutwhat he eats.
And she says, okay, I will findsomething else beside food.
Oh, how about that?
(06:10):
I can use pictures of fruit.
Okay, I mean, a high five withmy kid works great.
You know, it is really goodmotivation.
A double high five is really.
It really gets him going.
And if you even want to rewardhim more than that, you can use
words and be upbeat about it.
(06:31):
And you can even do patty cakehigh fives across the body.
He loves that shit, you know.
Hey, great job, you did it.
Yeah, that kind of stuff eatsit up.
He loves it, and most of themdo.
I don't know why they go tofood, you know.
Just give him some moralsupport, anyway.
So she says I can use picturesof fruit.
(06:52):
I am going to call his dad,he's just not working.
Okay, so four days later thereis another message and the
teacher says Hi, Jacob was inart and was swearing.
Then she says I was just gotout of first hour.
Do you want me to call his dad?
I replied three minutes later;If you cannot get him to stop
(07:14):
swearing, or if he won't listento you or the other adults
around him, then you can eitherlet him know that you're wanting
to call his dad and see if hestops, or just call his dad if
you cannot deal with him.
And so I sent that and my replyto the parent advocate and to
the therapists that were workingwith him.
(07:36):
My comment to them was, I mean,come on.
.
.
and really come on, how hard isit?
I have explained this a hundredtimes.
Why are you emailing me to askme if you should do what I've
told you to do when you'resupposed to do it?
I'm not there to babysit theteachers.
I wrote that whole letter.
I read it to you in my lastepisode.
(07:58):
I did that for a reason.
I shouldn't have to beinterrupted from my work day to
hold the teacher's hand and tellher whether she should call
daddy or not.
I fucking put it out there in aletter.
I thought it was very concise.
I thought it left nothing tothe imagination, no stone
unturned.
I thought I did really wellwith my intro letter to how to
(08:20):
deal with my son.
And here she is constantlyasking me, geez.
Anyway, also I want to say thatthat stupid question about the
oranges..
.
I sent a list of the foods thatare allowed.
I did not leave a window for,oh, I'm not sure, I didn't know,
(08:40):
so I poisoned him.
Sorry, you know, I didn't know,so I poisoned him, sorry, you
know I'm very meticulous aboutthis stuff.
I gave an entire list of whathe can eat, because what he
cannot eat is too long of a list.
So I thought, well, I'll justmake it easy and I'll just put
what he can eat and basically,if you just remember that his
(09:00):
plate can be green and white, ifit's not green or white, he
can't eat it, basically.
So it's not that hard, it'sjust, You know, that's why I'm
so aggravated as a parent of aspecial needs child, because I,
man, I try, I try to make it aseasy as possible so that they
don't make me sound like thisand talk to them like they are
(09:20):
stupid.
Okay.
So anyway, the teacher emails meback and says he stopped
swearing after severalredirections.
I wanted to see if that wassomething that you wanted us to
call right away on or not.
Thank you, it's up to you.
You're the one dealing withthem.
It's your classroom.
Come on, geez, I mean, you knowright, do I make the rules for
(09:44):
her classroom?
No, if it's not okay, if youcan't deal with it, then you
call his dad.
It's pretty freaking simple.
So, anyway, I emailed her back,along with the other people that
I always copy these to, andmentioned that the psychology of
the phone call to his dad isthat you can use it as a threat
(10:05):
to get him to straighten up ifyour normal actions are not
working.
Occasionally, he will test youand you will have to prove to
him that you will actually callhis dad by actually calling his
dad.
I mean, what do you, you know?
What do you want from me?
Come on, okay.
So apparently they had contactedus about his behavior earlier
(10:27):
on this particular day.
It was a Wednesday and I'msending this email that I'm
getting ready to read at 9 51 am.
It says good morning, Thankyou for contacting us about
Jacob's behavior earlier today.
Do you know if he is behavingthis way with one certain para
(10:48):
or with every para that isworking with him?
You mentioned that he showsrespect for you when you enter
the room and stops his behavior,which is great.
We're just wondering if there'ssomeone specific who is
unwittingly encouraging hisbehaviors.
And the teacher replies Hi, Ithink the behavior was due to
(11:09):
another para being in the roomwhen she's normally not in there
.
I asked her to leave and thebehavior got better.
We changed from Gloria toMackenzie and his behaviors have
gotten much better.
As we both know, when routineschange, it affects him.
We have finals today, so therewas an extra aid and she thought
(11:31):
she was helping.
I don't think it is that theyare encouraging the behavior at
all.
I think it is due to change andnot knowing what was going on.
He also is more amped up in themornings than he is in the
afternoon.
Having the lights down andtaking calming breaths help.
I need to work with them moreon calming him before he gets
(11:52):
worked up.
They normally call me, but Iwas dealing with a crisis.
I assure you that no one isencouraging negative behaviors
on purpose and I will work ontraining them on calming
techniques.
Thank you for your thoughts.
That's actually not what I wasimplying.
Then I sent that over to thepeople, who I copy it to, and I
(12:15):
told them these people are sodefensive it is impossible to
communicate normally with them.
They're so concerned withassuring us that they're in
control that our messages aren'teven being read properly.
We said unwittingly.
She says on purpose, the focusis supposed to be on reading
Jacob and helping Jacob, but itfeels like it shifts more to
(12:39):
self-defense.
I'm sure she'll cry about thisemail before she goes to sleep
tonight, and this is because sheaccused me of being mean, if
you recall from my last episode.
So this is how I look at hernow.
She's obviously very sensitiveand I think that's correct what
I was trying to say in thisemail is that maybe someone's
(13:00):
there who's bothering him anddoesn't realize that they're
bothering him?
And yes, she actually said thatIn there.
She said there was another aidein the room that usually isn't
there.
Well, yeah, there you go.
I didn't say she was doing it onpurpose.
I said unwittingly Maybe thatwas too big of a word, I don't
know she was a pretty youngteacher and I don't even.
(13:21):
I mean, I guess anyone can be ateacher these days, isn't that
true Especially?
I mean, this was a publicschool, but private schools, you
never know who's teaching yourkids, right, you know.
So this is a constant battlefor me and I'm just such a
practical minded person thatthis kind of stuff I just don't
get it.
I don't understand why theseare even issues that we're going
(13:42):
through all the time.
So two days after that there'sanother email and she says 830am
on a Friday, hi Jacob wassqueezing a water tube with
beads meant to help with hissensory needs and it popped.
(He does that to all of them.
He'll break every single one.
(14:03):
) He will need new pants.
I am so sorry that happened.
I can only think that he usedhis nails or squeezed too tight
and of course I wasn't upset.
So I emailed her back.
I said his home therapist gavehim one of those and he did the
same thing to it last week.
His dad's on his way with somenew pants.
We were only, I mean, 10minutes down the road, so, uh.
(14:25):
So she says no, okay, thank you, no more water toys.
Sorry again.
Y you know, you don't have toprofusely apologize to me for
that.
I mean, he's a perpetualfive-year-old.
He's always going to need achange of clothes.
It's not a big deal, I don'tmind.
I, you know, they think.
It seems that they thought thatI was some kind of tyrant, you
know, and I'll.
(14:46):
I just want him to be treatedfairly, that's all, and I want
you to use your damn brain anduse the tools that I give you.
I'm not, you know, I'm notgoing to be upset about him
getting his pants wet.
He's a child, he's always goingto be a child.
We're ready, we're ready withnew clothes.
It's fine, no big deal.
I just, I don't know, you know,it's just..
.
It's just really discouragingand disappointing that this is
(15:08):
the tone of the communicationsall the time.
I don't know, maybe it's justme.
Please send me emails if youthink that..
.
Maybe.
.
.
you know, maybe this is betterthan I think it is, but I don't
know.
It just rubs me the wrong way.
I try to be nice about it all.
I'm the only one looking outfor him, that's it.
You know, I have to be.
(15:33):
I'm in his corner and hiscorner only.
So yeah, this was weird, Idon't know.
So I believe that thisoriginated as a phone call from
the school to us, and I think itwas earlier in the day, on this
day, which was a Friday inFebruary, because the email came
from the teacher at noon andshe says hi, checking in, I hope
(15:58):
everything checks out for Jacob.
That's just the strangest thingto happen.
My reply to her.
.
.
this is so weird.
.
.
I said, The nurse said.
.
.
so, okay, so we had to take himto prompt care.
T hey called us and this waswhat happened.
The nurse said that that washer second patient with ladybugs
in the ears.
(16:19):
She checked him out and he'sfine.
No bites or anything like that.
Thanks again.
I mean, leave it to my kid, Idon't know.
So the teacher says oh gosh,that's so strange, since they
are not really around right now.
I mean, yeah, it was February,you know.
I am glad he is okay and thatit all came out.
I was worried about aninfection starting.
(16:41):
Yeah, that was weird.
And I don't know if you you'reprobably aware I mean, if you've
been around for any length oftime in life, you have realized
that ladybugs tend to go dead inthe windowsills, but then they
come back to life when spring orthe sun warms them up, even if
it's not spring.
So I don't know, it could havehappened in his room, it could
(17:01):
have happened in my office, itcould have happened at school.
I don't know where the ladybugcame from, but he had a ladybug
in his ear and I don't know how.
I don't know if he wascomplaining about and I don't
know how.
I don't know if he wascomplaining about if he said
ouch or I don't know, but he was.
He indicated something to theteachers and they looked in his
(17:21):
ear and said there was.
They thought a ladybug, and itwas.
It was a ladybug and I thoughtit was really funny that the
nurse at the prompt care saidthat he was not the only one to
have ladybugs thank God!9.45 that same night she sent
an email that his annual IEP wascoming up.
(17:46):
And you know, yeah, you get anannual IEP.
But just in case you're new tomy podcast and you're new to
this whole IEP thing, you canhave emergency IEPs whenever you
want and you can have as manyof them as you need to.
I think there may be areasonable limit put on there.
You know you can't do one everyday or something like that, but
(18:07):
it's, the annual IEP, is thebare minimum, I guess is what
I'm getting at.
And we had already had multipleIEP meetings this entire time,
from when he started school thatyear through the month of
January.
Isent a note note, this was
(18:28):
February 12th, it was a Monday,and I sent a note, handwritten
note, to the school and I got towhere I was pinning the notes
on his jacket, because theydon't read the notebook and
stuff.
So anytime I wanted tocommunicate something and I
wanted everyone to know, I wouldjust put the note on his coat
(18:51):
so that they, you know, they hadto look at it, and he he
allowed it.
I told him it's for everyonehas to see it, and I think I
don't know he kind of liked it.
He liked having that so thateveryone had to stop and read
his coat.
I thought that he would fightme a little bit or just be
irritated with having a piece ofpaper pinned to his coat, but
(19:12):
he didn't really mind.
He liked the attention and heliked it being weird.
He likes anything that's out ofthe ordinary, I think.
And the teacher emailed me at8.43 that morning.
She says Hi, I got your noteabout him not sleeping.
He seems very upset and it istaking a lot to calm him.
We can handle it.
I just wanted to let you know.
(19:32):
And I replied he was actuallyreally happy and friendly and
funny here at home this morning.
There may be something settinghim off, perhaps on the ride to
school.
She says I cannot say since Iam not in there In the van.
Duh.
Gloria said he was fine untilhe got closer to Marion that's
(19:53):
the town he went to school in.
Did you have an idea on acouple of dates in March for an
IEP?
And I just said just let usknow what works best for you.
And she says okay, I'll getback to you.
You can bring the van concernup at the meeting as well.
I do not have the power tochange who drives the van.
All right, so let's get into acouple of these things real
quick here.
(20:13):
The van and Gloria.
This is the lady that starteddriving the van because my kid
couldn't handle the bus rideanymore.
He went and flapped at her onetime and she reeled back a
little bit and he saw her dothat and he locked onto that so
she became his victim.
Every time he got a chance hewould flap at her.
(20:36):
That is one thing.
Then, another concern that wehad about the van is you see, we
lived in northern Wisconsin.
When you get that far north,they don't take snow days.
It's not like here in Illinois,where you get a few inches
extra and they're like, oh,close the school.
Or that you start gettingthreats of an ice storm around
(20:58):
here and they're like, no, noschool, no church, no after
school activities, gyms areclosed, everything's closed.
No, not in Wisconsin.
We asked about snow days oneday and they laughed at us.
They're like we don't do thataround here, we would never get
out of school.
So they don't plow untilthey're damn good and ready.
They wait until the snow ispretty well done, falling before
(21:19):
they plow, but they also don'tclose school, so it can be a
little treacherous and that'sjust the way they live up there.
So this lady's driving afreaking minivan, okay, and
there is a highway on the way toschool from our we lived out in
the country, and then you haveto get on your way into town.
So there's this highway andthere's a highway on the way to
school from our we lived out inthe country, and then you have
to get on your way into town.
So there's this highway andthere's a curve.
(21:40):
It's a blind curve.
I mean, you know you bettermove your ass and keep going,
because no one's going to seeyou.
And I don't know if you knowthis, but most of the people in
Wisconsin are drunk.
So you know, whatever, you'vegot to be careful.
They're out there drunk driving.
They don't get..
.
I've met people with six andeight DUIs and they still have
(22:02):
their license in Wisconsin.
So you just have to be awareand you have to make sure that
you're doing the right things asa sober driver, because lots of
people are not.
Okay.
One day my spouse had to leaveearly in the morning as well,
shortly after the bus, and hewas heading into town, past
where Jacob goes to school, andhe sees two cars pulled over on
(22:27):
this curve on a highway which isyou know.
I mean it was 50 mile an hourspeed limit, even though there's
snow and ice and everythingit's.
You know, you got to be careful.
So there's right on the curve,the blind curve that you can't
see until you get up on it.
?
There is a teenage kid with hislike old car and a van behind
(22:49):
the kid.
And my husband sees this and herecognizes that there's trouble
and that they're parked in avery bad spot and he gets off
the road in his dress, shoes andeverything stomps through the
snow to go see what's going on.
Are you guys OK, because thisis very dangerous.
And he learns that that's ourson's van and our son is in the
(23:13):
van and they're parked there onthe curve and he says why are
you here?
Are you okay?
Do I need to take my son toschool?
And she says, oh no, this youngman was parked here and I
thought he was broken down.
So I stopped to help.
And my husband's like no, no,you don't stop to help someone
(23:35):
broken down on a highway with mykid in the van.
This is dangerous, and so thatbecame a whole thing.
So not only did we have, youknow, a little less respect for
her because she was a victim toour son, because she lost her
control that day, but now wedon't trust her and now we think
(23:56):
she's really stupid.
So we contacted the school andthe teachers and everyone and
told them this is ridiculous andunsafe and we don't ever want
to see this again.
That's the deal of why we wouldwant to be complaining about
the van driver.
I mean, you know what?
The kid is old enough to drive.
(24:16):
My child is disabled.
What the fuck?
I don't know.
Why would you?
No, it's not okay, it's notokay.
About seven days later, therewas a serious storm and they had
to close school early.
So another thing that might havebeen nice for Jacob to see the
(24:37):
teacher write in the notebook,On March 1st, the teacher
decided to email me Hi, I justwanted to let you know that
Jacob is having a great daytoday.
You know, that's the kind ofpositive reinforcement that I
want you to show my son.
You don't need to email me that.
I'm glad that it was just sucha bright spot in your day that
(24:59):
you had to do that, but youshould have put it in the stupid
notebook so that he could seeit.
I mean, he wants everyone to beproud of him, not just me and
his dad.
He's with you for all thesehours.
You show him what you're happywith.
He doesn't understand thatyou're emailing me.
He doesn't know that.
They sent me an email about somekind of training they were
(25:20):
having for families, youth andproviders.
It was called What's After HighSchool?
They said it's a broad overviewof the transition to adult life
for young adults withdisabilities and special needs
and includes the followingtopics Planning for the future,
the role of schools, long-termsupports, vocational resources.
Moving into adult health care.
(25:41):
Supported decision making.
Basics of self-determination.
This training is ideal forfamilies who have children age
14 to 21 and providers andschool staff who work with young
adults with special needs, andproviders and school staff who
work with young adults withspecial needs.
Youth are encouraged to attend.
So that seems pretty cool and Iwill say that we don't have any
(26:04):
supports.
We're in a different state nowand whatever, everybody's turned
him down.
But I just wanted to read thatto you so that if you have a kid
below the age of 14, then thisis something that should be
coming up for you when yourchild is approaching the age of
14 or is in the age span of 14to 21.
(26:25):
Just keep your eyes out forthat, and if you don't see
invitations like this, ask,suggest and do everything in
your power to see if they'll putsomething like this together
for you.
I'm sure that they do, but youjust can't be too sure about the
competency of people, so justbe aware.
Then, on March 5th, the teachersays hi, we have no idea why,
(26:50):
but Jacob was having a reallyhard time in the lunchroom so we
moved him up to his room to eat.
He was fine, and now he iscrying and cannot tell us what
is wrong.
Okay, now this brings me back towhen she said that I told her
about him not being able tosleep, and during these months,
(27:11):
two months prior to this so thiswas in March so around December
and January, I believe, is whenI started getting into trying
CBD oil for him.
.
It was still not legal, so Iwent through I believe it was
Charlotte's Web Company and Igot, you know, the very best of
the very best CBD for him and,you know, for me, and my husband
(27:33):
too might as well.
I started using that.
I was convinced, because wedidn't want to do
pharmaceuticals.
I was absolutely convinced,with all my experience and
education in cannabis, that thatwas going to be like a major,
major help for him and it wasgoing to change our lives.
I really thought that cannabiswas going to just be amazing and
(27:55):
I wanted to start with the CBDbecause maybe he didn't need the
THC.
But that plant is amazing.
It heals all kinds of stuff andI thought, man, I really think
that this is what he needs.
I think it would calm him down,I think it would take care of
this anxiety.
I think that it would make himmore cooperative and help slow
him down a little bit so thatmaybe he can process things
(28:17):
better.
And they're using it fordisabilities all across the
country.
They're using it for all kindsof stuff and I really I want to
try this.
I really think it's going tohelp.
So I was able to get a discount.
If you, you don't have to dothis anymore, because it's legal
(28:37):
almost everywhere.
But you know, look, if you everhave to do anything like this,
always ask if they have ahardship program, no matter what
it is.
I don't care if you're doing astool test.
You know something that theysend to your house or any kind,
anything that's just a littleweird and is going to be out of
pocket for you always ask ifthey have a hardship program and
(28:59):
I mean I did and I was able toget a discount on this CBD.
It was super expensive and theygave me a really nice deal.
So that was really cool of themand a lot of companies will do
that for you if you ask and letthem know that you are
experiencing hardships.
I got him this CBD because ofthings like this email and the
(29:23):
other one with not sleeping andstuff like that.
You know, no one has any ideaand he's just being set off and
he's, you know, up and downrollercoaster emotions Also.
I mean, look, he was 16, 17.
So puberty and all that stuffand not being understood and not
being able to talk.
I mean there's just a lot goingon.
I was just trying to help himout and I start giving him this
(29:45):
CBD.
So I gave him his first doseand within In about 20 minutes
he was significantly, noticeablymore calm and he noticed it and
I noticed it.
I thought that I saw in hiseyes and on his face that he was
(30:05):
like, oh shit, this is working,I feel good.
That's what I thought I saw onhim and I was encouraged.
I gave him his doses and I keptit as low as possible because
with a lot of these types ofthings you want to be able to
titrate up in incremental doses.
You don't want to start out at,you know, banging with the
(30:26):
biggest dose because then you'llnever find the sweet spot.
So if you start low and titrateup, that's the best way to find
your sweet spot.
Otherwise, you'll never respondto anything else favorably.
So that's how we were doing itand I have to say that I never
saw the same result as I did thefirst time.
(30:48):
I religiously gave him the samedose for many days, probably a
couple of weeks, never saw achange.
So then, incrementally, Iincreased the dosage and I
started seeing changes in theopposite direction.
He would get irritable, moreirritable, more angry, even
though it, you know, I got onethat tasted like mint.
(31:10):
He loves that flavor and it waslike mint and cinnamon and he
just loves weird ass flavorslike that.
He loves sour apple and limeand you know just all kinds of
weird stuff.
So I thought mint and cinnamonwould be probably right up his
alley.
It wasn't that he didn't likeit, it wasn't that he was
fighting it.
I mean there, he could not helpit.
(31:31):
I could tell that this was.
It was like when he and myhusband would eat Doritos way
back in the day.
They both went psycho withinminutes of eating Doritos and
it's just the brominatedvegetable oil and stuff like
that that's in there and it justmesses with your brain and it
makes you irritable and it makesyou want to kill people and it
(31:52):
makes you not want to even hearother people's voices and stuff.
I mean, that's how it is for myhusband and my son can't
verbalize how it makes him feel,but he acts the same way as my
husband did when he was eatingthem and he loves talking to me.
He loves listening to me talk.
But after my husband would eata little bag of Doritos he was
(32:21):
ready to wring my neck and hedidn't want to hear anything I
had to say ever.
It was just crazy.
So that's kind of how Jacobstarted acting with the CBD oil
and many years later, when Istarted working in dispensaries,
I actually got a formaleducation in cannabis before I
got my dispensary jobs.
I've got like sevencertifications in cannabis and I
learned that kids with autism,some kids, have a specific
protein in their bodies.
(32:41):
I can't remember what it'scalled, but all I know is that
they have a specific protein intheir bodies that makes them
have an adverse reaction to CBDand to this day if you give him
any kind of CBD at all, he'salmost violent.
I mean you really have to get alot of THC and counter it and
(33:03):
just basically knock him out toreset him.
Give him so much THC that itmakes him go to sleep, because
CBD it just pisses him off.
It is not good for him.
So I think that he's got thatprotein.
It's never worked for him,except for that very first time.
Ever since then it's been anightmare and I stay away from
(33:24):
it like the plague for him, andlike indica if it's a straight
heavy indica?
My son does not get along withindica.
He's an opposite reactor,basically.
So Indica puts him through theroof.
When it's supposed to put youIn de couch, but no, it puts him
through the roof and I mean hejust goes wild and not in a fun,
(33:47):
happy way.
So we only do sativa or hybrids, and it has to be a sativa
dominant hybrid.
So yeah, that's my thing abouthim acting strange.
I started to feel like, man..
.
If we could just get to figureout how to get him some cannabis
legally, because Wisconsin wasnowhere near getting ready to
(34:09):
legalize and I knew that here inIllinois it was already legal
medically it had been for yearsalready and just not in
Wisconsin.
No.
So I knew, I could see on thehorizon, the way that Jacob was
taking my attention away from myjob, our business was going to
fail and I was doing everythingI could to keep it afloat.
(34:32):
But I lost too much time awayfrom the phone because of having
to deal with Jacob and historture with me and it affected
me mentally so badly that I justcouldn't.
I couldn't do it and I knew, Icould see it was coming.
I was going to have to shutthis all down and we were going
to have to move here and it wasgoing to suck and I knew it and
(34:53):
I hated it here already.
.
.
one way of keeping myself alittle bit optimistic about
knowing I was going to end uphere, at least for a while, is
at least they have cannabislegal there.
At least I can try to get himhooked up at some point, and
see, because I really think thatcannabis is going to change his
(35:13):
life.
That's to be continued anothertime I'll tell you more later.
Okay, so then on, like March 9th, the teacher emails.
I think this is about food.
Hi, I wanted to check in andsee if you are okay with Jacob
going with my independent livingskills class to the grocery
store.
On Tuesday.
We will be using our grocerylists to get items to bake
(35:36):
cookies.
The other question I have is isit okay for him to eat the
cookies when we are done?
I have included a recipe of thecookies he picked out.
If not, do you have a recipethat we can make that he could
eat?
She actually looked and found afrom divascancookcom easy
gluten-free chocolate chipcookies recipe, soft and chewy,
(35:58):
and she says I was alsowondering if I bought coconut
oil, Can we use that to teachhim how to fry an egg?
We would not do that on thesame day as the cookies.
So now we're getting on the samepage and school's almost over
March.
Yeah, so I mean it only tookthat long.
But now we're starting tounderstand the importance of
reading the things that I sendabout Jacob and his requirements
(36:22):
.
And yeah, cool, I replied.
Thank you for checking with us.
Yes, he may go to the store.
As previously mentioned, hecannot eat butter or impure
butter, substitutions or refinedsugars.
There are two recipe linksbelow.
Please do not use the one yousent us.
If you cannot find organicchocolate chips, maybe you can
(36:42):
sub raisins and please chooseone of the recipes included
below.
We have never used either ofthese, but they seem easy for
school.
So I got coconut flourchocolate chip cookies from
Detoxinistacom and then coconutflour cookies from and then
coconut flour cookies fromTheCoconutMama.
comCoconut Mama, If you're into any
of this stuff, I love her.
(37:03):
She has an entire recipe bookon just dairy-free ice cream,
sugar-free ice cream.
It's amazing, it's really good.
I have itSo then I also let them know,
please be aware, that the maplesyrup in that recipe means real,
pure maple syrup, not flavoredsugar syrup such as Aunt Jemima
or Log Cabin, etc.
(37:23):
Jacob is not to eat that typeof syrup.
It may be better to avoidshowing him things like this
unless the school is able tosupply the pure ingredients that
Jacob requires, because he getshung up absolutely obsessed
with stuff.
I'm not telling the email that.
I'm telling you that.
That's why I would prefer thatpeople don't put stuff in his
(37:46):
face and tell him that this iswhat he's going to get and then
not give it to him, because he'svery particular with his memory
and if you show him a blondieand then you give him a double
fudge cookie, he's going to bepissed.
Just tell him what he's goingto get and then give it to him.
Don't give him the wrong ideais all I'm trying to say.
(38:06):
So she says that she has puremaple syrup, but they won't make
it if they can't find the pureingredients that we need.
And then I let her know thatthe coconut flour does not need
to be organic.
I was just trying to make iteasy.
I would prefer that it is.
But you know, the reason I likemy flours and coffees and stuff
to be organic and spices andstuff like that, in case you're
(38:26):
not aware is that they'renon-irradiated when you get them
organic.
I don't think that you knowthere's a lot of pesticides and
herbicides being used to growcoconuts.
So that's a big thing.
You know that's a big concernwith other types of foods.
That's something to consider.
Okay, then on March 19th shesent a message that says sorry,
(38:49):
Jacob's lunch bag was left inthe van.
And I said do you have any ideawhy it was in the van and
separate from the book bagitself?
Was he disassembling hisbelongings?
Because you know just why isn'tit in his book bag, like it's
supposed to be?
He's only got one bag.
He's not supposed to keep trackof all his different things.
They have to be in one bag.
(39:10):
So she says I am not in the van, so I don't know.
He had to have taken it out,since it was in there when he
left.
So you know, that was a littlesmarmy.
I think she could have justsaid I don't know, but I
personally put it in his bagwhen he left, so he maybe he
took it out.
I'm not in the van, I don't know.
So there was a little thing, Iguess he was doing with adaptive
(39:32):
PE, and it sounds like I wasgoing down there to observe.
So the teacher says hi, I justwanted to let you know that I
emailed the gym teacher personand he knows to expect you
tomorrow at 135.
Would you like Jacob to meetyou in the office or meet you in
the workout room?
And I said I would prefer toobserve Jacob quietly in the gym
(39:56):
before joining him so that hedoes not know I'm there.
Thank you for your help.
She said okay, sounds good.
We won't tell him that you arecoming.
We can try and get him downthere a little early so that he
does not see you.
He does act a lot differentwhen we're not around, Even back
then.
andI've told you that you know
know, I think that we areholding him back just by being
(40:16):
present.
You that you know.
I think that we are holding himback just by being present, and
I wish there was a place wherewe felt that he would be happy,
educated and taken care of andentertained, because I think
that he would advance, developbetter and that he would find
talents that maybe we don't knowhe has.
But he is so affected by thepresence of his parents that he
(40:38):
just stays in this state ofstupor and it breaks my heart to
see it.
There are so many more storiesof abuse and neglect to these
kids in those group homes andstuff like that.
I've actually never reallyheard a great group home story.
I just hear all the horriblestuff and I guess that's to be
(41:01):
expected, but it's reallydiscouraging.
And then a couple days later shesays hi, I just want to let you
know that Jacob was reallyupset in the van today.
He was hitting the dashboard.
Now he is crying and upset aswell.
I am not sure what has changed,but he has been really off
since Monday.
(41:21):
So I said there is some sort ofsolar flare occurrence this
month.
Maybe he's being affected by it.
He's been off at home as well,I don't know, but he definitely
is affected by all of thesethings that happen Barometric
pressure, everything.
It just it really affects him.
I have a dear friend who has ayoung child with severe autism
(41:41):
as well and she told me severalyears ago that her son had been
acting a certain way for youknow, a couple of days and my
first question was do you have astorm front coming in?
Because it sounds like stormfront behavior and it was a
winter storm.
She had to look.
She's like yes, we do have.
It's a winter storm coming in.
It's been coming in, beenheading here for a while.
(42:03):
I'm like, yeah, well, there yougo, you know.
So if you ever are wonderingand you know, maybe just check
the weather and see if your kidis one of those kids that's
affected by this.
And then there is this thingthat says I found this on Amazon
that might help Jacob determineif the water is safe to get
into.
So she found me a floatingthermometer on Amazon.
(42:24):
Okay, so I sent this to theteacher.
Jacob has been getting bloodynoses lately.
He had one again this morning.
Just a heads up.
Also, I order our coconut flourfrom honeyvillecom.
So in case you guys needcoconut flour, that's who I used
to order it from.
And she says, okay, do you doanything special?
When he gets a bloody nose,does he get upset?
And I said he doesn't get upset.
(42:46):
Sometimes he doesn't even tellus.
We're working on making himtell us He'll just deal with it
and come with just bloodeverywhere.
We're like what is going on?
He's very strange.
He doesn't give you a like aprelude to throwing up either,
like he'll just, he'll just,he'll be a pill and you won't
(43:09):
know why.
And he's just whiny, very whiny, high pitched whining and just
very agitated.
And then all of a sudden, youknow he'll just be walking
through the hallway bitching andjust blah, just right, just
everywhere.
He doesn't bend over, hedoesn't run for a bucket, he
doesn't go in the bathroom, hedoesn't try to stop it, he just
(43:31):
lets it fly wherever he is.
And he's the same way with burps.
He'll just be talking and let aburp, just a burp, fall right
out of him.
It's the funniest thing really,because he doesn't know how to
deal with it.
You know, it's just, I don'tknow, it's just.
I've never heard anyone burplike that.
(43:52):
It's not a forced burp, it justcomes out with his word that
he's trying to use, whether it'sa sound or whatever, it's just
there.
It is, you know, and that's howhe throws up and that's how he
gets bloody noses, Sometimes,That's how he poops.
It's just, You know, just rightthere, just yeah, whatever.
You know, just part of it, yeah, great.
(44:13):
They sent me a picture or videoof him making a coil pot in art
and he's wearing a big longapron and he's working with clay
and that's super cute.
I'm going to try to post that.
I'll try to post these picturesfrom the teacher of him working
with clay and stuff on myFacebook and whatnot.
Just because.
(44:34):
O nApril 6th she wrote Hi, jacob
said his eyes hurt.
I think he's tired and they aresore or it's allergies.
Is there anything you wouldlike me to do so with his eyes?
He will, all day long just sitthere, If no one notices him or
doesn't say anything, he'll justsit there and stick his fingers
in his eyes all day, just sitthere and just you know, and
(44:57):
then his eyes are just red andthey got brown circles around
him.
He looks like a drug addict andhe looks like he's been crying
and all kinds of stuff and it'sjust no.
He's just been sticking hisfingers in his eyes all stupid
day.
So that's one thing.
And then he's got another thingwhere he tries to.
At first I thought he wasgrabbing his eyelashes, but it
(45:18):
turns out that he was brushinghis eyebrows down and trying to
get them into his eyes.
So I keep them trimmed, but hestill.
He tries to somehow get hiseyebrow down inside of his eye
and he'll do that for a whileand then he'll start complaining
and he'll say I can't see myeyes.
(45:40):
I can't see my eyes and and hemakes it seem like it's the end
of the world and like he's sickor in pain or something.
And I'm like your eyes are fineand you kind of have to be that
way with him.
You're fine, you can see fine,everything's fine, your eyes are
fine, you know, otherwise he'lljust obsess and he'll make a
problem out of nothing.
He's just really good at that.
I have two other things I'mgoing to mention to you when
(46:01):
this is all done, on April 11th.
She says hi, I have rice chexcereal.
Can Jacob have a small amount,around 1015, if he is hungry?
She says, Mackenzie says he ishaving a hard time eating his
lunch and it is taking a while.
He does not seem to be ashungry as normal, but he is
eating it.
Well, I wonder if that'sbecause you gave him cereal two
(46:24):
hours beforehand, I don't know.
So I said well, he had somebacon this morning.
Maybe it hurt his stomach, Idon't know.
12 days later we got an emailthat says Hi, I just wanted to
say goodbye to you and Jacob.
I am so sad to hear that youare moving.
I care a great deal for Jacoband I wish the best for him and
your family.
Please keep in touch and lethis new teachers know that I am
(46:47):
happy to talk with them andassist in any way possible.
Thank you for letting me get toknow your incredible son.
He is wonderful in so many ways.
No-transcriptNow I want to mention a couple
(47:50):
things here that did not getmentioned in any of this, but at
one point during school andduring this particular season of
school, he was accused oftouching the teacher's breasts
and again, that really upset me.
You know that he was accused ofbeing a sexual person before
(48:13):
during in the autism group and Iswear to God he's not.
He's not.
The thing about him is that heknows where your heart is at and
when he flaps and stuff he'llsay, oh, my heart, you know,
because it gets his heart racingand he says heart attack and
stuff like that.
But the way that he grew up waswhen he would need to be calmed
(48:36):
down or reassured or just toldthat we love him.
His dad would always put hishand on Jacob's chest, on his
heart, and we would show himthis is your heart and that was
just a way that we educated himon where certain parts of your
body are, where certain parts ofyour body are, you know, when
(49:01):
he thinks you're sad, he'll goup to you and he'll say, are you
sad?
And he'll put his hand on yourchest.
He's looking for your heart.
He doesn't mean anything elseexcept to heal your heart and
that's how he's been taught andit makes him feel good, so he
thinks that it makes others feelgood as well, and he didn't
realize that some people aregoing to not want touch on their
(49:25):
chest.
But this woman's well-endowedand she accused my son of
grabbing her tits and that's notWhat was going on, and I mean
she's grandma age anyway.
It wasn't.
It wasn't, you know, and itjust offended me because my boy
is sweet and loving when he'snot psycho and it's.
(49:47):
That's not what he was doing.
He's been accused of that manytimes and I guess that's our
fault because we teach him wherethe heart is at.
You know, I don't know.
I just I really hate that thatpeople sexualize my son when
he's not.
He's not that person and he'snever been that person.
The other thing I want tomention is I don't know if I
(50:09):
mentioned this before, since I'mnot sure.
I'm just going to tell youagain I I don't think that I did
, but perhaps.
Anyway, it's still a cute storyI, during these years like 15
through 17, I was trying to gethim to be more independent on
(50:29):
self-care, toiletries and juststuff like that.
So brushing your teeth, washingyour face, washing your hands
which is still an ongoing battle, all of these things I still
have to tell him how to brushhis teeth.
You know, it's just.
You know it's never going toget better unless he's away from
us.
I really think so.
Anyhow, one thing was that Iwanted him to be able to shave
(50:50):
himself, because I am not, I'mnot comfortable shaving a man's
face.
I've never done it and I didn'twant to do it.
I became nervous because hishalf sister took it upon herself
to shave his peach fuzz and itwasn't really that grown in and
he was like 15, I think, and I,you know I didn't think that was
(51:12):
very cool, because it's notyour kid and you haven't seen
him in a long time, and you'rejust going to go into the bath
and take it upon yourself toshave my son's face.
It's kind of fucked up, I don't.
I just I just think that wasoverstepping.
And then I you know, everyonebelieves that if you once you
start shaving now you got toshave it's going to come back
(51:32):
Now.
Now you started something.
You know you could have left italone, but you started this now
.
So I became a little bit, youknow, conscious of hey, this is,
this is going to be a thing.
I bought a Norelco razor And itseemed really safe to me and I
ran it by his dad and we boththought, yeah, that would be
really nice because he's, youknow, he's 15, 16, 17.
It's time You're big.
(51:54):
It's not easy to take care of agrown person easy to take care
(52:20):
of a grown person.
So we taught him how to use itand what it feels like, and it
was a whole introductory thingwe did with him.
And one day we asked him if hewould please shave his chin and
his lip and we showed himexactly where to do it and he
came downstairs in no time witheverything shaved.
I think it was like summer orsomething, because I think he
(52:40):
had super short hair.
I had just given him a buzz cuttoo, I think, and I'm gonna
have to post these pictures.
It was horrific at first, but itbecame really funny and
endearing because he came downand, oh, it was awful, he had no
eyebrows, and when you gotclose to him, you could see that
(53:01):
he had just like closed tohopefully closed his eyes.
I think maybe he had him openbecause he loves looking at
himself and I was like, oh shit,he almost shaved his eyeballs,
you know, I think that maybethat's probably what he was
doing, and you could see, though, his eyelashes had chunks taken
out of them.
Some of them were long and someof them were chopped off, and
(53:23):
it was awful, he shavedeverything he could.
And he came down giggling andhappy and he just he was so
happy with himself and we werehorrified, like no, oh no, this
can never work, this will neverhappen again.
Fuck, I'm going to shave hisface for the rest of my life.
(53:45):
This sucks, please don't dothis.
You know and we were, we didn'tknow what to do, we didn't know
how to react, and then we had totake him out in public, of
course, because he goes grocery,shopping and stuff.
So it was shortly after thathe's nothing had started growing
back yet, and I had him in thetruck we were all together, I
believe and we got out and he,instantly, he gets out and he
(54:12):
hunches over, he raises hisshoulder up and hunches down and
starts limp like drag limping,you know, limping and dragging
his foot like Quasimodo andbefore we could even recognize
what he was doing, he assumedthis posture and this walk and
he says Quasimodo, and it wasperfect.
(54:35):
It was so cute.
I would have let him stayshaved all the time.
It was adorable.
I was like, well, okay, I coulddo this, he could shave, it's
fine.
You know how freaking cute thatwas awesome.
He loves that movie.
So that was our attempt athelping him be independent and
getting his shaving done.
And we have never tried since.
(54:56):
But it's on the list.
We're going to try.
We're going to order anotherNorelco, because now his dad is
the one shaving him and it'sactually really hard for his dad
to shave him.
It hurts his back.
We'll see how it goes.
And I did want to share anotherreally cool story.
A couple of weeks ago we hadour family day and we were just
out driving around.
(55:16):
We didn't know, like I don'tknow, somehow my spouse was
driving and he wasn't.
It wasn't like a plan, we werejust driving around and he had
this idea that we were going togo over here and get off on this
exit and go check out thisfishing hole.
Well, I didn't know that and Iwould have helped him look for
the exit had I known, but Ididn't know.
I was just enjoying the rideand all of a sudden my spouse
(55:37):
was like I think I missed myexit and we ended up in a like a
college town about 45 minutesfrom here.
I knew we were coming up on itand I had just seen on Instagram
something about a little like afun little landmark there and
all this cool stuff that you cando at this place, and so I was
(55:58):
like hey, I think we're rightover here by this place.
Why don't we look for it?
So I looked and we found thedirections to it, and it's one
of those places that doesn'texist, like the map will tell
you go here, go here, and thereit is, but it's not there.
And we didn't find it until wewere on our way out of town and
we had given up, and then it wasnowhere near where the map said
(56:19):
it was.
It was over here, but then itwasn't what it said it was, so
it was just a big goose chase.
Anyway, the kid is in the backfor the whole time.
I mean, he's just, you know,being good, enjoying the ride,
and we're heading home and it'sbeen over 90 minutes that we've
been in the car, and so he sayssomething about taking off his
shoes.
You know, shoes off, shoes off.
He says.
I said, yeah, buddy, you couldtake your shoes off.
(56:41):
And we had gone to Walmartbefore we took this big road
trip.
So we bought him a few tanktops from you know Hanes, tank
tops in the like a 10 pack orwhatever.
And they're rolled up in there,nice and neat, each one
individually.
And I asked him do you want tolay down?
He says yes.
So I tried to clear off theseat.
Now, the thing about our son isthat he does not know how to
(57:03):
make himself comfortable.
He doesn't understand it at all.
I've been teaching him thisforever.
I am all about beingcomfortable and I just don't.
I don't understand why hedoesn't understand.
You know, it's the same drillall the time.
Why can't you do it by now?
Usually he'll have a pillow andblankets and all that stuff in
the car and he still can'tfigure it out.
(57:23):
I don't understand it.
So I always have to, you know,get out of my seat, turn around,
get him situated, and it's abig deal, it's quite a
production.
I did bare minimum because wedidn't have a lot of stuff.
So I got him to understand thatno, I don't want you to lay your
head on the middle armrest, Iwant you to put the armrest away
(57:43):
, put it in there in the seat.
That's what he thought he wasjust going to hunch forward and
put his head on the stupidarmrest?
No, so finally he understandswe're not going to do that.
And he puts the armrest awayand then I'm trying to explain
to him, to lay down the way healways does.
He's been doing this for 20years.
I don't get it.
I don't understand why hedoesn't get it.
So, anyway, I'm trying toexplain to him.
(58:05):
I want him to lay, put his feetand legs up on the seat and do
the thing.
You know, even if you have toput your him on my head.
I'm like put them right here,do you understand?
And he's like, yeah, so hedidn't really understand, but I
was able to reach around andhelp him and he kind of got it.
(58:27):
So together we got him in theright space and he had picked
where he wanted his head on thedoor and he had those behind him
and they looked pretty safe andsecure.
And I was like are you good?
He's like, yeah, I'm good.
I said okay.
So I turned around and a coupleseconds at least went by.
It was nice and quiet in the carand then all of a sudden, out
of the blue, he says socomfortable, shannon doll.
(58:50):
I said what?
And he said, oh, sorry,nevermind.
And I'm like did you say you'recomfortable?
He goes so comfortable, shannondoll.
I was like, oh my gosh, that'sa good word, buddy, good,
awesome.
That was so great.
He's never said that word everthat I've ever heard.
Maybe he says it in private, Idon't know, but I have never
(59:11):
heard him say that word.
I've never heard him use it ina sentence.
I word, I've never heard himuse it in a sentence.
I've never heard him indicatein any way that he was so
comfortable and that just mademy heart so happy.
That was so awesome.
I didn't even know that heunderstood the meaning of
comfort.
So that was huge and I've beenwanting to share that for a
(59:34):
couple of weeks now, but I heldit back because I had the other
one last week and now I don'tknow.
Hopefully I can grab anothergood story out for the next time
.
I'm going to be releasing thefull video that goes with the
audio promoting my saferlifestyles blueprint very soon.
I have to do all the designmyself and it's a little bit
difficult with everything elseI've got going on, but I'm also
(59:57):
going to make another copy.
I'm going to just have it outthere.
So I hope that you will spreadthe news.
Share the podcast, share thatepisode if you don't mind, share
all of my episodes, anythingyou can do, and, of course, I
always love to hear from you.
In my next episode I'm going tostart talking about our
transition from Wisconsin toIllinois, how we talked to our
(01:00:19):
son about it, how we tried tocondition him for it and the
short-term effects that it hadon him and how we moved forward
from there.
There's a lot of juicy stuffcoming up in the next few months
with these episodes.
It got real interesting.
Let's just say that.
On another note, it is thebeginning of August now and that
(01:00:41):
means school is starting soon.
So if you have a kiddo inschool, I hope that these emails
have shed some light on some ofthe things that may be going
back and forth or may behappening behind the scenes.
Remember to get your IEPsscheduled ASAP and as often as
possible as well.
Do not take no for an answer.
(01:01:03):
Make sure they are honoringyour child's needs, make sure
they are providing your childwith an appropriate education,
and try to find yourself aparent advocate, and anyone who
works with your child outside ofthe school may be interested in
attending your IEPs.
And the more people that youhave on your side of the table
(01:01:26):
at these IEP meetings, theeasier it is for you as a parent
, because these other peoplethat work with your child have a
different perspective andguaranteed your child is
different with them than withyou, and those people know more
about your child's rights thanmost parents do.
That's something to keep inmind.
I mean, it's their job.
(01:01:47):
You know it's kind of our jobstoo as parents, but we have the
parenting to do and we work andwe have all kinds of stuff.
So try to rely on theprofessionals that are on your
team and see if that helps youmake a better school year for
your child.
I hope you enjoy the rest ofyour summer.
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.
This is another episode ofTeaching the Teachers from while
we were in Wisconsin.
We had such a time and, to behonest, it didn't get any better
once we left.
That was the very best statefor us to have him in, in my
(00:42):
opinion, although we haven'tbeen to a lot of other states,
Illinois has been even worse,but we still have emails to
share from January of 2018through March and then in April.
Unfortunately, we had to packup and leave Wisconsin.
Please remember, if thisepisode or any of my episodes
(01:03):
touches you in any way, makesyou laugh or cry or makes you
mad or anything like that,please remember to share this
podcast with anyone you can, inany way that you can.
If you have comments or want toshare your experiences, if any
of the things I talk about ringsa bell for you and you want to
say something and let me knowwhat happened on your end with
(01:26):
something, please feel free todrop me an email.
That would becontactparentingsevereautism at
gmailcom.
And, of course, you can alwaysclick the buy me a coffee or
support the show icon and donateto help keep this free for
those who need it.
I'm trying to get up to athousand downloads a month and
(01:48):
I've got quite a ways to go.
But the more that you share anddiscuss and all of that, the
better chance I have.
And what happens?
When I get a thousand downloadsa month, I get to buy
advertising to reach more people.
It just buys me some spots onother podcasts, but I'm trying
to get a team effort heretogether, here at home between
(02:10):
me and my husband posting on allthe socials and hopefully that
will help as well.
Okay, so we're continuing withthe fight about the food.
I never agreed with using foodas a tool.
I just there's too many casesof eating disorders and OCD
(02:31):
around food and it's just, in myopinion, it is not a healthy
method.
So that's why I'm alwaysfighting with the teachers about
using food.
I think that they couldprobably use other things if
they would just open their mindsa little bit.
I just don't want people usingfood to influence my child.
I just don't, I just don't.
And I think that we should havethat right as parents, because
(02:55):
you know you're training him toevery he's not going to do
anything good unless you givehim a freaking cookie, and it's
not fair.
I don't want to live that way.
I don't want to live that way.
So I don't want my childfocused on food and even though
we have had that fight for allthese years, my child is focused
on food.
(03:15):
I have some stories to sharewith you about that.
I mean, it gets really, reallybad and it's just his own thing,
his own hyper focus, and it'sjust his own thing, his own
hyper focus, whatever on food.
It's terrible, and I'm so gladthat I did not allow an entire
lifestyle built around foodmotivators, because it's bad
enough just the way it is.
(03:36):
I just want to get right intothese emails because it's just
really the best illustration ofwhat was going on in the
communication and the teachingstyle and the mindset and
everything.
So I just want to get throughthese and I may drop some
comments here and there, but theteacher wrote it looks like on
a Monday morning, January 8th,Hi, I hope you had a nice
(03:59):
weekend.
My first question is if I wantto use a cutie as a question is
if I want to use a cutie as amanipulative, could he eat it or
would an apple be okay, we areworking on identifying fractions
.
If not, he wouldn't have to eatthem or I can find something
else to use.
Second, I wanted to let youknow that he is having a very
(04:19):
hard time stopping the self-talkand movies.
He keeps reciting Batman andother movies.
I have redirected, had him takea break and wrote in the
notebook.
My next step is to call his dadhave a great day.
Please forgive me with myreading.
My contact lenses are messed upand I can hardly see my stupid
(04:43):
screen.
I'm doing the best I can hereNow.
As you know, I had a food testdone on all of us, and oranges
is one of the things he cannotdigest and I used to feed it to
him all the time.
I felt horrible when I realizedthat almost every food I was
feeding him was not able to bedigested and what kind of pain
that was probably causing, andhe can't tell me.
(05:05):
But the lady who did the testexplained to me what happens
when we eat something we cannotdigest.
So he doesn't have the enzymesfor certain foods.
Oranges and bananas are two ofthose foods and he used to eat
those all the time.
So we did end up switching toapples.
Okay.
So my response was Jacob cannotdigest oranges.
(05:26):
I think grapes or organicapples are okay and of course
they're not going to go do that.
But yes, we are sticklers forthat because of all the
chemicals, as you know, we don'tallow any food dyes or any kind
of pesticides or herbicides orany of that stuff.
We are completely organic andyou know we're just doing the
(05:49):
best we can.
He's already polluted, I meanthat's you know.
Look at him.
So he has to deal with thatevery day and I'm just doing
everything I can to keep himfrom getting more buildup in his
body.
So we are very strict aboutwhat he eats buildup in his body
.
So we are very strict aboutwhat he eats.
And she says, okay, I will findsomething else beside food.
Oh, how about that?
(06:10):
I can use pictures of fruit.
Okay, I mean, a high five withmy kid works great.
You know, it is really goodmotivation.
A double high five is really.
It really gets him going.
And if you even want to rewardhim more than that, you can use
words and be upbeat about it.
(06:31):
And you can even do patty cakehigh fives across the body.
He loves that shit, you know.
Hey, great job, you did it.
Yeah, that kind of stuff eatsit up.
He loves it, and most of themdo.
I don't know why they go tofood, you know.
Just give him some moralsupport, anyway.
So she says I can use picturesof fruit.
(06:52):
I am going to call his dad,he's just not working.
Okay, so four days later thereis another message and the
teacher says Hi, Jacob was inart and was swearing.
Then she says I was just gotout of first hour.
Do you want me to call his dad?
I replied three minutes later;If you cannot get him to stop
(07:14):
swearing, or if he won't listento you or the other adults
around him, then you can eitherlet him know that you're wanting
to call his dad and see if hestops, or just call his dad if
you cannot deal with him.
And so I sent that and my replyto the parent advocate and to
the therapists that were workingwith him.
(07:36):
My comment to them was, I mean,come on.
.
.
and really come on, how hard isit?
I have explained this a hundredtimes.
Why are you emailing me to askme if you should do what I've
told you to do when you'resupposed to do it?
I'm not there to babysit theteachers.
I wrote that whole letter.
I read it to you in my lastepisode.
(07:58):
I did that for a reason.
I shouldn't have to beinterrupted from my work day to
hold the teacher's hand and tellher whether she should call
daddy or not.
I fucking put it out there in aletter.
I thought it was very concise.
I thought it left nothing tothe imagination, no stone
unturned.
I thought I did really wellwith my intro letter to how to
(08:20):
deal with my son.
And here she is constantlyasking me, geez.
Anyway, also I want to say thatthat stupid question about the
oranges..
.
I sent a list of the foods thatare allowed.
I did not leave a window for,oh, I'm not sure, I didn't know,
(08:40):
so I poisoned him.
Sorry, you know, I didn't know,so I poisoned him, sorry, you
know I'm very meticulous aboutthis stuff.
I gave an entire list of whathe can eat, because what he
cannot eat is too long of a list.
So I thought, well, I'll justmake it easy and I'll just put
what he can eat and basically,if you just remember that his
(09:00):
plate can be green and white, ifit's not green or white, he
can't eat it, basically.
So it's not that hard, it'sjust, You know, that's why I'm
so aggravated as a parent of aspecial needs child, because I,
man, I try, I try to make it aseasy as possible so that they
don't make me sound like thisand talk to them like they are
(09:20):
stupid.
Okay.
So anyway, the teacher emails meback and says he stopped
swearing after severalredirections.
I wanted to see if that wassomething that you wanted us to
call right away on or not.
Thank you, it's up to you.
You're the one dealing withthem.
It's your classroom.
Come on, geez, I mean, you knowright, do I make the rules for
(09:44):
her classroom?
No, if it's not okay, if youcan't deal with it, then you
call his dad.
It's pretty freaking simple.
So, anyway, I emailed her back,along with the other people that
I always copy these to, andmentioned that the psychology of
the phone call to his dad isthat you can use it as a threat
(10:05):
to get him to straighten up ifyour normal actions are not
working.
Occasionally, he will test youand you will have to prove to
him that you will actually callhis dad by actually calling his
dad.
I mean, what do you, you know?
What do you want from me?
Come on, okay.
So apparently they had contactedus about his behavior earlier
(10:27):
on this particular day.
It was a Wednesday and I'msending this email that I'm
getting ready to read at 9 51 am.
It says good morning, Thankyou for contacting us about
Jacob's behavior earlier today.
Do you know if he is behavingthis way with one certain para
(10:48):
or with every para that isworking with him?
You mentioned that he showsrespect for you when you enter
the room and stops his behavior,which is great.
We're just wondering if there'ssomeone specific who is
unwittingly encouraging hisbehaviors.
And the teacher replies Hi, Ithink the behavior was due to
(11:09):
another para being in the roomwhen she's normally not in there
.
I asked her to leave and thebehavior got better.
We changed from Gloria toMackenzie and his behaviors have
gotten much better.
As we both know, when routineschange, it affects him.
We have finals today, so therewas an extra aid and she thought
(11:31):
she was helping.
I don't think it is that theyare encouraging the behavior at
all.
I think it is due to change andnot knowing what was going on.
He also is more amped up in themornings than he is in the
afternoon.
Having the lights down andtaking calming breaths help.
I need to work with them moreon calming him before he gets
(11:52):
worked up.
They normally call me, but Iwas dealing with a crisis.
I assure you that no one isencouraging negative behaviors
on purpose and I will work ontraining them on calming
techniques.
Thank you for your thoughts.
That's actually not what I wasimplying.
Then I sent that over to thepeople, who I copy it to, and I
(12:15):
told them these people are sodefensive it is impossible to
communicate normally with them.
They're so concerned withassuring us that they're in
control that our messages aren'teven being read properly.
We said unwittingly.
She says on purpose, the focusis supposed to be on reading
Jacob and helping Jacob, but itfeels like it shifts more to
(12:39):
self-defense.
I'm sure she'll cry about thisemail before she goes to sleep
tonight, and this is because sheaccused me of being mean, if
you recall from my last episode.
So this is how I look at hernow.
She's obviously very sensitiveand I think that's correct what
I was trying to say in thisemail is that maybe someone's
(13:00):
there who's bothering him anddoesn't realize that they're
bothering him?
And yes, she actually said thatIn there.
She said there was another aidein the room that usually isn't
there.
Well, yeah, there you go.
I didn't say she was doing it onpurpose.
I said unwittingly Maybe thatwas too big of a word, I don't
know she was a pretty youngteacher and I don't even.
(13:21):
I mean, I guess anyone can be ateacher these days, isn't that
true Especially?
I mean, this was a publicschool, but private schools, you
never know who's teaching yourkids, right, you know.
So this is a constant battlefor me and I'm just such a
practical minded person thatthis kind of stuff I just don't
get it.
I don't understand why theseare even issues that we're going
(13:42):
through all the time.
So two days after that there'sanother email and she says 830am
on a Friday, hi Jacob wassqueezing a water tube with
beads meant to help with hissensory needs and it popped.
(He does that to all of them.
He'll break every single one.
(14:03):
) He will need new pants.
I am so sorry that happened.
I can only think that he usedhis nails or squeezed too tight
and of course I wasn't upset.
So I emailed her back.
I said his home therapist gavehim one of those and he did the
same thing to it last week.
His dad's on his way with somenew pants.
We were only, I mean, 10minutes down the road, so, uh.
(14:25):
So she says no, okay, thank you, no more water toys.
Sorry again.
Y you know, you don't have toprofusely apologize to me for
that.
I mean, he's a perpetualfive-year-old.
He's always going to need achange of clothes.
It's not a big deal, I don'tmind.
I, you know, they think.
It seems that they thought thatI was some kind of tyrant, you
know, and I'll.
(14:46):
I just want him to be treatedfairly, that's all, and I want
you to use your damn brain anduse the tools that I give you.
I'm not, you know, I'm notgoing to be upset about him
getting his pants wet.
He's a child, he's always goingto be a child.
We're ready, we're ready withnew clothes.
It's fine, no big deal.
I just, I don't know, you know,it's just..
.
It's just really discouragingand disappointing that this is
(15:08):
the tone of the communicationsall the time.
I don't know, maybe it's justme.
Please send me emails if youthink that..
.
Maybe.
.
.
you know, maybe this is betterthan I think it is, but I don't
know.
It just rubs me the wrong way.
I try to be nice about it all.
I'm the only one looking outfor him, that's it.
You know, I have to be.
(15:33):
I'm in his corner and hiscorner only.
So yeah, this was weird, Idon't know.
So I believe that thisoriginated as a phone call from
the school to us, and I think itwas earlier in the day, on this
day, which was a Friday inFebruary, because the email came
from the teacher at noon andshe says hi, checking in, I hope
(15:58):
everything checks out for Jacob.
That's just the strangest thingto happen.
My reply to her.
.
.
this is so weird.
.
.
I said, The nurse said.
.
.
so, okay, so we had to take himto prompt care.
T hey called us and this waswhat happened.
The nurse said that that washer second patient with ladybugs
in the ears.
(16:19):
She checked him out and he'sfine.
No bites or anything like that.
Thanks again.
I mean, leave it to my kid, Idon't know.
So the teacher says oh gosh,that's so strange, since they
are not really around right now.
I mean, yeah, it was February,you know.
I am glad he is okay and thatit all came out.
I was worried about aninfection starting.
(16:41):
Yeah, that was weird.
And I don't know if you you'reprobably aware I mean, if you've
been around for any length oftime in life, you have realized
that ladybugs tend to go dead inthe windowsills, but then they
come back to life when spring orthe sun warms them up, even if
it's not spring.
So I don't know, it could havehappened in his room, it could
(17:01):
have happened in my office, itcould have happened at school.
I don't know where the ladybugcame from, but he had a ladybug
in his ear and I don't know how.
I don't know if he wascomplaining about and I don't
know how.
I don't know if he wascomplaining about if he said
ouch or I don't know, but he was.
He indicated something to theteachers and they looked in his
(17:21):
ear and said there was.
They thought a ladybug, and itwas.
It was a ladybug and I thoughtit was really funny that the
nurse at the prompt care saidthat he was not the only one to
have ladybugs thank God!9.45 that same night she sent
an email that his annual IEP wascoming up.
(17:46):
And you know, yeah, you get anannual IEP.
But just in case you're new tomy podcast and you're new to
this whole IEP thing, you canhave emergency IEPs whenever you
want and you can have as manyof them as you need to.
I think there may be areasonable limit put on there.
You know you can't do one everyday or something like that, but
(18:07):
it's, the annual IEP, is thebare minimum, I guess is what
I'm getting at.
And we had already had multipleIEP meetings this entire time,
from when he started school thatyear through the month of
January.
Isent a note note, this was
(18:28):
February 12th, it was a Monday,and I sent a note, handwritten
note, to the school and I got towhere I was pinning the notes
on his jacket, because theydon't read the notebook and
stuff.
So anytime I wanted tocommunicate something and I
wanted everyone to know, I wouldjust put the note on his coat
(18:51):
so that they, you know, they hadto look at it, and he he
allowed it.
I told him it's for everyonehas to see it, and I think I
don't know he kind of liked it.
He liked having that so thateveryone had to stop and read
his coat.
I thought that he would fightme a little bit or just be
irritated with having a piece ofpaper pinned to his coat, but
(19:12):
he didn't really mind.
He liked the attention and heliked it being weird.
He likes anything that's out ofthe ordinary, I think.
And the teacher emailed me at8.43 that morning.
She says Hi, I got your noteabout him not sleeping.
He seems very upset and it istaking a lot to calm him.
We can handle it.
I just wanted to let you know.
(19:32):
And I replied he was actuallyreally happy and friendly and
funny here at home this morning.
There may be something settinghim off, perhaps on the ride to
school.
She says I cannot say since Iam not in there In the van.
Duh.
Gloria said he was fine untilhe got closer to Marion that's
(19:53):
the town he went to school in.
Did you have an idea on acouple of dates in March for an
IEP?
And I just said just let usknow what works best for you.
And she says okay, I'll getback to you.
You can bring the van concernup at the meeting as well.
I do not have the power tochange who drives the van.
All right, so let's get into acouple of these things real
quick here.
(20:13):
The van and Gloria.
This is the lady that starteddriving the van because my kid
couldn't handle the bus rideanymore.
He went and flapped at her onetime and she reeled back a
little bit and he saw her dothat and he locked onto that so
she became his victim.
Every time he got a chance hewould flap at her.
(20:36):
That is one thing.
Then, another concern that wehad about the van is you see, we
lived in northern Wisconsin.
When you get that far north,they don't take snow days.
It's not like here in Illinois,where you get a few inches
extra and they're like, oh,close the school.
Or that you start gettingthreats of an ice storm around
(20:58):
here and they're like, no, noschool, no church, no after
school activities, gyms areclosed, everything's closed.
No, not in Wisconsin.
We asked about snow days oneday and they laughed at us.
They're like we don't do thataround here, we would never get
out of school.
So they don't plow untilthey're damn good and ready.
They wait until the snow ispretty well done, falling before
(21:19):
they plow, but they also don'tclose school, so it can be a
little treacherous and that'sjust the way they live up there.
So this lady's driving afreaking minivan, okay, and
there is a highway on the way toschool from our we lived out in
the country, and then you haveto get on your way into town.
So there's this highway andthere's a highway on the way to
school from our we lived out inthe country, and then you have
to get on your way into town.
So there's this highway andthere's a curve.
(21:40):
It's a blind curve.
I mean, you know you bettermove your ass and keep going,
because no one's going to seeyou.
And I don't know if you knowthis, but most of the people in
Wisconsin are drunk.
So you know, whatever, you'vegot to be careful.
They're out there drunk driving.
They don't get..
.
I've met people with six andeight DUIs and they still have
(22:02):
their license in Wisconsin.
So you just have to be awareand you have to make sure that
you're doing the right things asa sober driver, because lots of
people are not.
Okay.
One day my spouse had to leaveearly in the morning as well,
shortly after the bus, and hewas heading into town, past
where Jacob goes to school, andhe sees two cars pulled over on
(22:27):
this curve on a highway which isyou know.
I mean it was 50 mile an hourspeed limit, even though there's
snow and ice and everythingit's.
You know, you got to be careful.
So there's right on the curve,the blind curve that you can't
see until you get up on it.
?
There is a teenage kid with hislike old car and a van behind
(22:49):
the kid.
And my husband sees this and herecognizes that there's trouble
and that they're parked in avery bad spot and he gets off
the road in his dress, shoes andeverything stomps through the
snow to go see what's going on.
Are you guys OK, because thisis very dangerous.
And he learns that that's ourson's van and our son is in the
(23:13):
van and they're parked there onthe curve and he says why are
you here?
Are you okay?
Do I need to take my son toschool?
And she says, oh no, this youngman was parked here and I
thought he was broken down.
So I stopped to help.
And my husband's like no, no,you don't stop to help someone
(23:35):
broken down on a highway with mykid in the van.
This is dangerous, and so thatbecame a whole thing.
So not only did we have, youknow, a little less respect for
her because she was a victim toour son, because she lost her
control that day, but now wedon't trust her and now we think
(23:56):
she's really stupid.
So we contacted the school andthe teachers and everyone and
told them this is ridiculous andunsafe and we don't ever want
to see this again.
That's the deal of why we wouldwant to be complaining about
the van driver.
I mean, you know what?
The kid is old enough to drive.
(24:16):
My child is disabled.
What the fuck?
I don't know.
Why would you?
No, it's not okay, it's notokay.
About seven days later, therewas a serious storm and they had
to close school early.
So another thing that might havebeen nice for Jacob to see the
(24:37):
teacher write in the notebook,On March 1st, the teacher
decided to email me Hi, I justwanted to let you know that
Jacob is having a great daytoday.
You know, that's the kind ofpositive reinforcement that I
want you to show my son.
You don't need to email me that.
I'm glad that it was just sucha bright spot in your day that
(24:59):
you had to do that, but youshould have put it in the stupid
notebook so that he could seeit.
I mean, he wants everyone to beproud of him, not just me and
his dad.
He's with you for all thesehours.
You show him what you're happywith.
He doesn't understand thatyou're emailing me.
He doesn't know that.
They sent me an email about somekind of training they were
(25:20):
having for families, youth andproviders.
It was called What's After HighSchool?
They said it's a broad overviewof the transition to adult life
for young adults withdisabilities and special needs
and includes the followingtopics Planning for the future,
the role of schools, long-termsupports, vocational resources.
Moving into adult health care.
(25:41):
Supported decision making.
Basics of self-determination.
This training is ideal forfamilies who have children age
14 to 21 and providers andschool staff who work with young
adults with special needs, andproviders and school staff who
work with young adults withspecial needs.
Youth are encouraged to attend.
So that seems pretty cool and Iwill say that we don't have any
(26:04):
supports.
We're in a different state nowand whatever, everybody's turned
him down.
But I just wanted to read thatto you so that if you have a kid
below the age of 14, then thisis something that should be
coming up for you when yourchild is approaching the age of
14 or is in the age span of 14to 21.
(26:25):
Just keep your eyes out forthat, and if you don't see
invitations like this, ask,suggest and do everything in
your power to see if they'll putsomething like this together
for you.
I'm sure that they do, but youjust can't be too sure about the
competency of people, so justbe aware.
Then, on March 5th, the teachersays hi, we have no idea why,
(26:50):
but Jacob was having a reallyhard time in the lunchroom so we
moved him up to his room to eat.
He was fine, and now he iscrying and cannot tell us what
is wrong.
Okay, now this brings me back towhen she said that I told her
about him not being able tosleep, and during these months,
(27:11):
two months prior to this so thiswas in March so around December
and January, I believe, is whenI started getting into trying
CBD oil for him.
.
It was still not legal, so Iwent through I believe it was
Charlotte's Web Company and Igot, you know, the very best of
the very best CBD for him and,you know, for me, and my husband
(27:33):
too might as well.
I started using that.
I was convinced, because wedidn't want to do
pharmaceuticals.
I was absolutely convinced,with all my experience and
education in cannabis, that thatwas going to be like a major,
major help for him and it wasgoing to change our lives.
I really thought that cannabiswas going to just be amazing and
(27:55):
I wanted to start with the CBDbecause maybe he didn't need the
THC.
But that plant is amazing.
It heals all kinds of stuff andI thought, man, I really think
that this is what he needs.
I think it would calm him down,I think it would take care of
this anxiety.
I think that it would make himmore cooperative and help slow
him down a little bit so thatmaybe he can process things
(28:17):
better.
And they're using it fordisabilities all across the
country.
They're using it for all kindsof stuff and I really I want to
try this.
I really think it's going tohelp.
So I was able to get a discount.
If you, you don't have to dothis anymore, because it's legal
(28:37):
almost everywhere.
But you know, look, if you everhave to do anything like this,
always ask if they have ahardship program, no matter what
it is.
I don't care if you're doing astool test.
You know something that theysend to your house or any kind,
anything that's just a littleweird and is going to be out of
pocket for you always ask ifthey have a hardship program and
(28:59):
I mean I did and I was able toget a discount on this CBD.
It was super expensive and theygave me a really nice deal.
So that was really cool of themand a lot of companies will do
that for you if you ask and letthem know that you are
experiencing hardships.
I got him this CBD because ofthings like this email and the
(29:23):
other one with not sleeping andstuff like that.
You know, no one has any ideaand he's just being set off and
he's, you know, up and downrollercoaster emotions Also.
I mean, look, he was 16, 17.
So puberty and all that stuffand not being understood and not
being able to talk.
I mean there's just a lot goingon.
I was just trying to help himout and I start giving him this
(29:45):
CBD.
So I gave him his first doseand within In about 20 minutes
he was significantly, noticeablymore calm and he noticed it and
I noticed it.
I thought that I saw in hiseyes and on his face that he was
(30:05):
like, oh shit, this is working,I feel good.
That's what I thought I saw onhim and I was encouraged.
I gave him his doses and I keptit as low as possible because
with a lot of these types ofthings you want to be able to
titrate up in incremental doses.
You don't want to start out at,you know, banging with the
(30:26):
biggest dose because then you'llnever find the sweet spot.
So if you start low and titrateup, that's the best way to find
your sweet spot.
Otherwise, you'll never respondto anything else favorably.
So that's how we were doing itand I have to say that I never
saw the same result as I did thefirst time.
(30:48):
I religiously gave him the samedose for many days, probably a
couple of weeks, never saw achange.
So then, incrementally, Iincreased the dosage and I
started seeing changes in theopposite direction.
He would get irritable, moreirritable, more angry, even
though it, you know, I got onethat tasted like mint.
(31:10):
He loves that flavor and it waslike mint and cinnamon and he
just loves weird ass flavorslike that.
He loves sour apple and limeand you know just all kinds of
weird stuff.
So I thought mint and cinnamonwould be probably right up his
alley.
It wasn't that he didn't likeit, it wasn't that he was
fighting it.
I mean there, he could not helpit.
(31:31):
I could tell that this was.
It was like when he and myhusband would eat Doritos way
back in the day.
They both went psycho withinminutes of eating Doritos and
it's just the brominatedvegetable oil and stuff like
that that's in there and it justmesses with your brain and it
makes you irritable and it makesyou want to kill people and it
(31:52):
makes you not want to even hearother people's voices and stuff.
I mean, that's how it is for myhusband and my son can't
verbalize how it makes him feel,but he acts the same way as my
husband did when he was eatingthem and he loves talking to me.
He loves listening to me talk.
But after my husband would eata little bag of Doritos he was
(32:21):
ready to wring my neck and hedidn't want to hear anything I
had to say ever.
It was just crazy.
So that's kind of how Jacobstarted acting with the CBD oil
and many years later, when Istarted working in dispensaries,
I actually got a formaleducation in cannabis before I
got my dispensary jobs.
I've got like sevencertifications in cannabis and I
learned that kids with autism,some kids, have a specific
protein in their bodies.
(32:41):
I can't remember what it'scalled, but all I know is that
they have a specific protein intheir bodies that makes them
have an adverse reaction to CBDand to this day if you give him
any kind of CBD at all, he'salmost violent.
I mean you really have to get alot of THC and counter it and
(33:03):
just basically knock him out toreset him.
Give him so much THC that itmakes him go to sleep, because
CBD it just pisses him off.
It is not good for him.
So I think that he's got thatprotein.
It's never worked for him,except for that very first time.
Ever since then it's been anightmare and I stay away from
(33:24):
it like the plague for him, andlike indica if it's a straight
heavy indica?
My son does not get along withindica.
He's an opposite reactor,basically.
So Indica puts him through theroof.
When it's supposed to put youIn de couch, but no, it puts him
through the roof and I mean hejust goes wild and not in a fun,
(33:47):
happy way.
So we only do sativa or hybrids, and it has to be a sativa
dominant hybrid.
So yeah, that's my thing abouthim acting strange.
I started to feel like, man..
.
If we could just get to figureout how to get him some cannabis
legally, because Wisconsin wasnowhere near getting ready to
(34:09):
legalize and I knew that here inIllinois it was already legal
medically it had been for yearsalready and just not in
Wisconsin.
No.
So I knew, I could see on thehorizon, the way that Jacob was
taking my attention away from myjob, our business was going to
fail and I was doing everythingI could to keep it afloat.
(34:32):
But I lost too much time awayfrom the phone because of having
to deal with Jacob and historture with me and it affected
me mentally so badly that I justcouldn't.
I couldn't do it and I knew, Icould see it was coming.
I was going to have to shutthis all down and we were going
to have to move here and it wasgoing to suck and I knew it and
(34:53):
I hated it here already.
.
.
one way of keeping myself alittle bit optimistic about
knowing I was going to end uphere, at least for a while, is
at least they have cannabislegal there.
At least I can try to get himhooked up at some point, and
see, because I really think thatcannabis is going to change his
(35:13):
life.
That's to be continued anothertime I'll tell you more later.
Okay, so then on, like March 9th, the teacher emails.
I think this is about food.
Hi, I wanted to check in andsee if you are okay with Jacob
going with my independent livingskills class to the grocery
store.
On Tuesday.
We will be using our grocerylists to get items to bake
(35:36):
cookies.
The other question I have is isit okay for him to eat the
cookies when we are done?
I have included a recipe of thecookies he picked out.
If not, do you have a recipethat we can make that he could
eat?
She actually looked and found afrom divascancookcom easy
gluten-free chocolate chipcookies recipe, soft and chewy,
(35:58):
and she says I was alsowondering if I bought coconut
oil, Can we use that to teachhim how to fry an egg?
We would not do that on thesame day as the cookies.
So now we're getting on the samepage and school's almost over
March.
Yeah, so I mean it only tookthat long.
But now we're starting tounderstand the importance of
reading the things that I sendabout Jacob and his requirements
(36:22):
.
And yeah, cool, I replied.
Thank you for checking with us.
Yes, he may go to the store.
As previously mentioned, hecannot eat butter or impure
butter, substitutions or refinedsugars.
There are two recipe linksbelow.
Please do not use the one yousent us.
If you cannot find organicchocolate chips, maybe you can
(36:42):
sub raisins and please chooseone of the recipes included
below.
We have never used either ofthese, but they seem easy for
school.
So I got coconut flourchocolate chip cookies from
Detoxinistacom and then coconutflour cookies from and then
coconut flour cookies fromTheCoconutMama.
comCoconut Mama, If you're into any
of this stuff, I love her.
(37:03):
She has an entire recipe bookon just dairy-free ice cream,
sugar-free ice cream.
It's amazing, it's really good.
I have itSo then I also let them know,
please be aware, that the maplesyrup in that recipe means real,
pure maple syrup, not flavoredsugar syrup such as Aunt Jemima
or Log Cabin, etc.
(37:23):
Jacob is not to eat that typeof syrup.
It may be better to avoidshowing him things like this
unless the school is able tosupply the pure ingredients that
Jacob requires, because he getshung up absolutely obsessed
with stuff.
I'm not telling the email that.
I'm telling you that.
That's why I would prefer thatpeople don't put stuff in his
(37:46):
face and tell him that this iswhat he's going to get and then
not give it to him, because he'svery particular with his memory
and if you show him a blondieand then you give him a double
fudge cookie, he's going to bepissed.
Just tell him what he's goingto get and then give it to him.
Don't give him the wrong ideais all I'm trying to say.
(38:06):
So she says that she has puremaple syrup, but they won't make
it if they can't find the pureingredients that we need.
And then I let her know thatthe coconut flour does not need
to be organic.
I was just trying to make iteasy.
I would prefer that it is.
But you know, the reason I likemy flours and coffees and stuff
to be organic and spices andstuff like that, in case you're
(38:26):
not aware is that they'renon-irradiated when you get them
organic.
I don't think that you knowthere's a lot of pesticides and
herbicides being used to growcoconuts.
So that's a big thing.
You know that's a big concernwith other types of foods.
That's something to consider.
Okay, then on March 19th shesent a message that says sorry,
(38:49):
Jacob's lunch bag was left inthe van.
And I said do you have any ideawhy it was in the van and
separate from the book bagitself?
Was he disassembling hisbelongings?
Because you know just why isn'tit in his book bag, like it's
supposed to be?
He's only got one bag.
He's not supposed to keep trackof all his different things.
They have to be in one bag.
(39:10):
So she says I am not in the van, so I don't know.
He had to have taken it out,since it was in there when he
left.
So you know, that was a littlesmarmy.
I think she could have justsaid I don't know, but I
personally put it in his bagwhen he left, so he maybe he
took it out.
I'm not in the van, I don't know.
So there was a little thing, Iguess he was doing with adaptive
(39:32):
PE, and it sounds like I wasgoing down there to observe.
So the teacher says hi, I justwanted to let you know that I
emailed the gym teacher personand he knows to expect you
tomorrow at 135.
Would you like Jacob to meetyou in the office or meet you in
the workout room?
And I said I would prefer toobserve Jacob quietly in the gym
(39:56):
before joining him so that hedoes not know I'm there.
Thank you for your help.
She said okay, sounds good.
We won't tell him that you arecoming.
We can try and get him downthere a little early so that he
does not see you.
He does act a lot differentwhen we're not around, Even back
then.
andI've told you that you know
know, I think that we areholding him back just by being
(40:16):
present.
You that you know.
I think that we are holding himback just by being present, and
I wish there was a place wherewe felt that he would be happy,
educated and taken care of andentertained, because I think
that he would advance, developbetter and that he would find
talents that maybe we don't knowhe has.
But he is so affected by thepresence of his parents that he
(40:38):
just stays in this state ofstupor and it breaks my heart to
see it.
There are so many more storiesof abuse and neglect to these
kids in those group homes andstuff like that.
I've actually never reallyheard a great group home story.
I just hear all the horriblestuff and I guess that's to be
(41:01):
expected, but it's reallydiscouraging.
And then a couple days later shesays hi, I just want to let you
know that Jacob was reallyupset in the van today.
He was hitting the dashboard.
Now he is crying and upset aswell.
I am not sure what has changed,but he has been really off
since Monday.
(41:21):
So I said there is some sort ofsolar flare occurrence this
month.
Maybe he's being affected by it.
He's been off at home as well,I don't know, but he definitely
is affected by all of thesethings that happen Barometric
pressure, everything.
It just it really affects him.
I have a dear friend who has ayoung child with severe autism
(41:41):
as well and she told me severalyears ago that her son had been
acting a certain way for youknow, a couple of days and my
first question was do you have astorm front coming in?
Because it sounds like stormfront behavior and it was a
winter storm.
She had to look.
She's like yes, we do have.
It's a winter storm coming in.
It's been coming in, beenheading here for a while.
(42:03):
I'm like, yeah, well, there yougo, you know.
So if you ever are wonderingand you know, maybe just check
the weather and see if your kidis one of those kids that's
affected by this.
And then there is this thingthat says I found this on Amazon
that might help Jacob determineif the water is safe to get
into.
So she found me a floatingthermometer on Amazon.
(42:24):
Okay, so I sent this to theteacher.
Jacob has been getting bloodynoses lately.
He had one again this morning.
Just a heads up.
Also, I order our coconut flourfrom honeyvillecom.
So in case you guys needcoconut flour, that's who I used
to order it from.
And she says, okay, do you doanything special?
When he gets a bloody nose,does he get upset?
And I said he doesn't get upset.
(42:46):
Sometimes he doesn't even tellus.
We're working on making himtell us He'll just deal with it
and come with just bloodeverywhere.
We're like what is going on?
He's very strange.
He doesn't give you a like aprelude to throwing up either,
like he'll just, he'll just,he'll be a pill and you won't
(43:09):
know why.
And he's just whiny, very whiny, high pitched whining and just
very agitated.
And then all of a sudden, youknow he'll just be walking
through the hallway bitching andjust blah, just right, just
everywhere.
He doesn't bend over, hedoesn't run for a bucket, he
doesn't go in the bathroom, hedoesn't try to stop it, he just
(43:31):
lets it fly wherever he is.
And he's the same way with burps.
He'll just be talking and let aburp, just a burp, fall right
out of him.
It's the funniest thing really,because he doesn't know how to
deal with it.
You know, it's just, I don'tknow, it's just.
I've never heard anyone burplike that.
(43:52):
It's not a forced burp, it justcomes out with his word that
he's trying to use, whether it'sa sound or whatever, it's just
there.
It is, you know, and that's howhe throws up and that's how he
gets bloody noses, Sometimes,That's how he poops.
It's just, You know, just rightthere, just yeah, whatever.
You know, just part of it, yeah, great.
(44:13):
They sent me a picture or videoof him making a coil pot in art
and he's wearing a big longapron and he's working with clay
and that's super cute.
I'm going to try to post that.
I'll try to post these picturesfrom the teacher of him working
with clay and stuff on myFacebook and whatnot.
Just because.
(44:34):
O nApril 6th she wrote Hi, jacob
said his eyes hurt.
I think he's tired and they aresore or it's allergies.
Is there anything you wouldlike me to do so with his eyes?
He will, all day long just sitthere, If no one notices him or
doesn't say anything, he'll justsit there and stick his fingers
in his eyes all day, just sitthere and just you know, and
(44:57):
then his eyes are just red andthey got brown circles around
him.
He looks like a drug addict andhe looks like he's been crying
and all kinds of stuff and it'sjust no.
He's just been sticking hisfingers in his eyes all stupid
day.
So that's one thing.
And then he's got another thingwhere he tries to.
At first I thought he wasgrabbing his eyelashes, but it
(45:18):
turns out that he was brushinghis eyebrows down and trying to
get them into his eyes.
So I keep them trimmed, but hestill.
He tries to somehow get hiseyebrow down inside of his eye
and he'll do that for a whileand then he'll start complaining
and he'll say I can't see myeyes.
(45:40):
I can't see my eyes and and hemakes it seem like it's the end
of the world and like he's sickor in pain or something.
And I'm like your eyes are fineand you kind of have to be that
way with him.
You're fine, you can see fine,everything's fine, your eyes are
fine, you know, otherwise he'lljust obsess and he'll make a
problem out of nothing.
He's just really good at that.
I have two other things I'mgoing to mention to you when
(46:01):
this is all done, on April 11th.
She says hi, I have rice chexcereal.
Can Jacob have a small amount,around 1015, if he is hungry?
She says, Mackenzie says he ishaving a hard time eating his
lunch and it is taking a while.
He does not seem to be ashungry as normal, but he is
eating it.
Well, I wonder if that'sbecause you gave him cereal two
(46:24):
hours beforehand, I don't know.
So I said well, he had somebacon this morning.
Maybe it hurt his stomach, Idon't know.
12 days later we got an emailthat says Hi, I just wanted to
say goodbye to you and Jacob.
I am so sad to hear that youare moving.
I care a great deal for Jacoband I wish the best for him and
your family.
Please keep in touch and lethis new teachers know that I am
(46:47):
happy to talk with them andassist in any way possible.
Thank you for letting me get toknow your incredible son.
He is wonderful in so many ways.
No-transcriptNow I want to mention a couple
(47:50):
things here that did not getmentioned in any of this, but at
one point during school andduring this particular season of
school, he was accused oftouching the teacher's breasts
and again, that really upset me.
You know that he was accused ofbeing a sexual person before
(48:13):
during in the autism group and Iswear to God he's not.
He's not.
The thing about him is that heknows where your heart is at and
when he flaps and stuff he'llsay, oh, my heart, you know,
because it gets his heart racingand he says heart attack and
stuff like that.
But the way that he grew up waswhen he would need to be calmed
(48:36):
down or reassured or just toldthat we love him.
His dad would always put hishand on Jacob's chest, on his
heart, and we would show himthis is your heart and that was
just a way that we educated himon where certain parts of your
body are, where certain parts ofyour body are, you know, when
(49:01):
he thinks you're sad, he'll goup to you and he'll say, are you
sad?
And he'll put his hand on yourchest.
He's looking for your heart.
He doesn't mean anything elseexcept to heal your heart and
that's how he's been taught andit makes him feel good, so he
thinks that it makes others feelgood as well, and he didn't
realize that some people aregoing to not want touch on their
(49:25):
chest.
But this woman's well-endowedand she accused my son of
grabbing her tits and that's notWhat was going on, and I mean
she's grandma age anyway.
It wasn't.
It wasn't, you know, and itjust offended me because my boy
is sweet and loving when he'snot psycho and it's.
(49:47):
That's not what he was doing.
He's been accused of that manytimes and I guess that's our
fault because we teach him wherethe heart is at.
You know, I don't know.
I just I really hate that thatpeople sexualize my son when
he's not.
He's not that person and he'snever been that person.
The other thing I want tomention is I don't know if I
(50:09):
mentioned this before, since I'mnot sure.
I'm just going to tell youagain I I don't think that I did
, but perhaps.
Anyway, it's still a cute storyI, during these years like 15
through 17, I was trying to gethim to be more independent on
(50:29):
self-care, toiletries and juststuff like that.
So brushing your teeth, washingyour face, washing your hands
which is still an ongoing battle, all of these things I still
have to tell him how to brushhis teeth.
You know, it's just.
You know it's never going toget better unless he's away from
us.
I really think so.
Anyhow, one thing was that Iwanted him to be able to shave
(50:50):
himself, because I am not, I'mnot comfortable shaving a man's
face.
I've never done it and I didn'twant to do it.
I became nervous because hishalf sister took it upon herself
to shave his peach fuzz and itwasn't really that grown in and
he was like 15, I think, and I,you know I didn't think that was
(51:12):
very cool, because it's notyour kid and you haven't seen
him in a long time, and you'rejust going to go into the bath
and take it upon yourself toshave my son's face.
It's kind of fucked up, I don't.
I just I just think that wasoverstepping.
And then I you know, everyonebelieves that if you once you
start shaving now you got toshave it's going to come back
(51:32):
Now.
Now you started something.
You know you could have left italone, but you started this now
.
So I became a little bit, youknow, conscious of hey, this is,
this is going to be a thing.
I bought a Norelco razor And itseemed really safe to me and I
ran it by his dad and we boththought, yeah, that would be
really nice because he's, youknow, he's 15, 16, 17.
It's time You're big.
(51:54):
It's not easy to take care of agrown person easy to take care
(52:20):
of a grown person.
So we taught him how to use itand what it feels like, and it
was a whole introductory thingwe did with him.
And one day we asked him if hewould please shave his chin and
his lip and we showed himexactly where to do it and he
came downstairs in no time witheverything shaved.
I think it was like summer orsomething, because I think he
(52:40):
had super short hair.
I had just given him a buzz cuttoo, I think, and I'm gonna
have to post these pictures.
It was horrific at first, but itbecame really funny and
endearing because he came downand, oh, it was awful, he had no
eyebrows, and when you gotclose to him, you could see that
(53:01):
he had just like closed tohopefully closed his eyes.
I think maybe he had him openbecause he loves looking at
himself and I was like, oh shit,he almost shaved his eyeballs,
you know, I think that maybethat's probably what he was
doing, and you could see, though, his eyelashes had chunks taken
out of them.
Some of them were long and someof them were chopped off, and
(53:23):
it was awful, he shavedeverything he could.
And he came down giggling andhappy and he just he was so
happy with himself and we werehorrified, like no, oh no, this
can never work, this will neverhappen again.
Fuck, I'm going to shave hisface for the rest of my life.
(53:45):
This sucks, please don't dothis.
You know and we were, we didn'tknow what to do, we didn't know
how to react, and then we had totake him out in public, of
course, because he goes grocery,shopping and stuff.
So it was shortly after thathe's nothing had started growing
back yet, and I had him in thetruck we were all together, I
believe and we got out and he,instantly, he gets out and he
(54:12):
hunches over, he raises hisshoulder up and hunches down and
starts limp like drag limping,you know, limping and dragging
his foot like Quasimodo andbefore we could even recognize
what he was doing, he assumedthis posture and this walk and
he says Quasimodo, and it wasperfect.
(54:35):
It was so cute.
I would have let him stayshaved all the time.
It was adorable.
I was like, well, okay, I coulddo this, he could shave, it's
fine.
You know how freaking cute thatwas awesome.
He loves that movie.
So that was our attempt athelping him be independent and
getting his shaving done.
And we have never tried since.
(54:56):
But it's on the list.
We're going to try.
We're going to order anotherNorelco, because now his dad is
the one shaving him and it'sactually really hard for his dad
to shave him.
It hurts his back.
We'll see how it goes.
And I did want to share anotherreally cool story.
A couple of weeks ago we hadour family day and we were just
out driving around.
(55:16):
We didn't know, like I don'tknow, somehow my spouse was
driving and he wasn't.
It wasn't like a plan, we werejust driving around and he had
this idea that we were going togo over here and get off on this
exit and go check out thisfishing hole.
Well, I didn't know that and Iwould have helped him look for
the exit had I known, but Ididn't know.
I was just enjoying the rideand all of a sudden my spouse
(55:37):
was like I think I missed myexit and we ended up in a like a
college town about 45 minutesfrom here.
I knew we were coming up on itand I had just seen on Instagram
something about a little like afun little landmark there and
all this cool stuff that you cando at this place, and so I was
(55:58):
like hey, I think we're rightover here by this place.
Why don't we look for it?
So I looked and we found thedirections to it, and it's one
of those places that doesn'texist, like the map will tell
you go here, go here, and thereit is, but it's not there.
And we didn't find it until wewere on our way out of town and
we had given up, and then it wasnowhere near where the map said
(56:19):
it was.
It was over here, but then itwasn't what it said it was, so
it was just a big goose chase.
Anyway, the kid is in the backfor the whole time.
I mean, he's just, you know,being good, enjoying the ride,
and we're heading home and it'sbeen over 90 minutes that we've
been in the car, and so he sayssomething about taking off his
shoes.
You know, shoes off, shoes off.
He says.
I said, yeah, buddy, you couldtake your shoes off.
(56:41):
And we had gone to Walmartbefore we took this big road
trip.
So we bought him a few tanktops from you know Hanes, tank
tops in the like a 10 pack orwhatever.
And they're rolled up in there,nice and neat, each one
individually.
And I asked him do you want tolay down?
He says yes.
So I tried to clear off theseat.
Now, the thing about our son isthat he does not know how to
(57:03):
make himself comfortable.
He doesn't understand it at all.
I've been teaching him thisforever.
I am all about beingcomfortable and I just don't.
I don't understand why hedoesn't understand.
You know, it's the same drillall the time.
Why can't you do it by now?
Usually he'll have a pillow andblankets and all that stuff in
the car and he still can'tfigure it out.
(57:23):
I don't understand it.
So I always have to, you know,get out of my seat, turn around,
get him situated, and it's abig deal, it's quite a
production.
I did bare minimum because wedidn't have a lot of stuff.
So I got him to understand thatno, I don't want you to lay your
head on the middle armrest, Iwant you to put the armrest away
(57:43):
, put it in there in the seat.
That's what he thought he wasjust going to hunch forward and
put his head on the stupidarmrest?
No, so finally he understandswe're not going to do that.
And he puts the armrest awayand then I'm trying to explain
to him, to lay down the way healways does.
He's been doing this for 20years.
I don't get it.
I don't understand why hedoesn't get it.
So, anyway, I'm trying toexplain to him.
(58:05):
I want him to lay, put his feetand legs up on the seat and do
the thing.
You know, even if you have toput your him on my head.
I'm like put them right here,do you understand?
And he's like, yeah, so hedidn't really understand, but I
was able to reach around andhelp him and he kind of got it.
(58:27):
So together we got him in theright space and he had picked
where he wanted his head on thedoor and he had those behind him
and they looked pretty safe andsecure.
And I was like are you good?
He's like, yeah, I'm good.
I said okay.
So I turned around and a coupleseconds at least went by.
It was nice and quiet in the carand then all of a sudden, out
of the blue, he says socomfortable, shannon doll.
(58:50):
I said what?
And he said, oh, sorry,nevermind.
And I'm like did you say you'recomfortable?
He goes so comfortable, shannondoll.
I was like, oh my gosh, that'sa good word, buddy, good,
awesome.
That was so great.
He's never said that word everthat I've ever heard.
Maybe he says it in private, Idon't know, but I have never
(59:11):
heard him say that word.
I've never heard him use it ina sentence.
I word, I've never heard himuse it in a sentence.
I've never heard him indicatein any way that he was so
comfortable and that just mademy heart so happy.
That was so awesome.
I didn't even know that heunderstood the meaning of
comfort.
So that was huge and I've beenwanting to share that for a
(59:34):
couple of weeks now, but I heldit back because I had the other
one last week and now I don'tknow.
Hopefully I can grab anothergood story out for the next time
.
I'm going to be releasing thefull video that goes with the
audio promoting my saferlifestyles blueprint very soon.
I have to do all the designmyself and it's a little bit
difficult with everything elseI've got going on, but I'm also
(59:57):
going to make another copy.
I'm going to just have it outthere.
So I hope that you will spreadthe news.
Share the podcast, share thatepisode if you don't mind, share
all of my episodes, anythingyou can do, and, of course, I
always love to hear from you.
In my next episode I'm going tostart talking about our
transition from Wisconsin toIllinois, how we talked to our
(01:00:19):
son about it, how we tried tocondition him for it and the
short-term effects that it hadon him and how we moved forward
from there.
There's a lot of juicy stuffcoming up in the next few months
with these episodes.
It got real interesting.
Let's just say that.
On another note, it is thebeginning of August now and that
(01:00:41):
means school is starting soon.
So if you have a kiddo inschool, I hope that these emails
have shed some light on some ofthe things that may be going
back and forth or may behappening behind the scenes.
Remember to get your IEPsscheduled ASAP and as often as
possible as well.
Do not take no for an answer.
(01:01:03):
Make sure they are honoringyour child's needs, make sure
they are providing your childwith an appropriate education,
and try to find yourself aparent advocate, and anyone who
works with your child outside ofthe school may be interested in
attending your IEPs.
And the more people that youhave on your side of the table
(01:01:26):
at these IEP meetings, theeasier it is for you as a parent
, because these other peoplethat work with your child have a
different perspective andguaranteed your child is
different with them than withyou, and those people know more
about your child's rights thanmost parents do.
That's something to keep inmind.
I mean, it's their job.
(01:01:47):
You know it's kind of our jobstoo as parents, but we have the
parenting to do and we work andwe have all kinds of stuff.
So try to rely on theprofessionals that are on your
team and see if that helps youmake a better school year for
your child.
I hope you enjoy the rest ofyour summer.
Hang in there, you're asuperhero.
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