December 11, 2024 • 29 mins
Misunderstandings with family, self-harming incidents, and heartbreaking decisions mark the emotional terrain of parenting a child with severe autism. Picture a moment where miscommunication with my son’s grandmother unravels, highlighting the delicate dance of maintaining family ties amidst the unique challenges of special needs parenting. I share a poignant story of a self-harming episode that led to the wrenching choice of withholding favorite treats—a testament to the ongoing struggle of balancing discipline with compassion.
Traditional schooling was a battlefield that left our child unhappy and unsupported, pushing us toward the road less traveled: homeschooling. With emotional and logistical hurdles at every turn, we navigated through a frustrating lack of support from the school system to create a nurturing learning environment at home. From setting up structured schedules to integrating therapeutic support, we focused on tailoring educational experiences to honor our child's individuality and fostering a positive atmosphere where he could thrive.
Through a non-schooling approach, we embraced the healing potential of nature and autonomy, allowing our son to explore life beyond structured education. Activities like riding a four-wheeler became symbols of freedom and joy, respecting his choices and supporting his journey toward comfort and healing. Amidst all this, we tackled the
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (00:19):
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
Please forgive my voice.
I woke up with a scratchythroat.
Hopefully we can get throughthis without me hurting your
ears too much.
I prefer to read the transcript, and you can't find the
transcript on your hostingplatform.
You can always head over topsabuzzsproutcom where you'll
(00:44):
find my transcript, show notes,links to recommended products
and also some podcastmerchandise.
I've got some coffee cups,water bottles and stickers and
stuff like that available.
If you'd like to support thepodcast or if you'd like to
point someone else in thisdirection, you can also buy me a
coffee.
A portion of the proceeds willgo into an account to help
(01:06):
another severe autism family inneed who cannot afford the
specialty therapy items, fooditems or other means of support
for their loved one.
So let's get into this.
If you ever thought I wasblowing things out of proportion
(01:27):
when I said that people look atmy child and treat my child as
if he's an alien, here's alittle story for you.
After the bad dream episode Itold you about last time, we had
another day when we woke up andhis grandfather says hey, I
think Jacob has been awake sincelike four in the morning.
He was being very loud in hisroom and he never came out, but
he was making a lot of noise andkind of yelling and stuff.
(01:48):
I think he dreams and that isnot from an outsider, that is
very much from an insider,someone who's in the house all
the time around our sonconstantly.
So there you go.
Shortly after that my spouse andson were out there in the
driveway.
The grandmother walks up to myspouse and says hi, what does
Jacob want for his birthday?
As you know, we're not reallyon great terms with her.
(02:11):
So my spouse says I don't know,ask him.
She just walks right up toJacob and doesn't even bother
trying to condition him or doany of the regular things to get
him ready to answer such aquestion.
And she just goes up to him andsays hey, what do you want for
your birthday?
So he instantly starts singingthe happy birthday song in his
(02:33):
out of tune way and that was heranswer.
She's only been out of thehouse for like I don't know,
four or five years and she hadplenty of opportunity to get to
know him and to stay in contactwith him and learn all about him
, and that's how she approacheshim.
She also stops by and dropspresents off for him I'm pretty
sure it's her and we just findthem sitting on the table.
(02:55):
No introduction, no, nothing,you know.
And of course my son's notgoing to play with anything and
I have made the request to stopdoing that and just come over
and play with him with thethings you've already gotten him
.
Stop buying him stuff becausehe doesn't use it.
He needs assistance witheverything.
He does not play on his own.
He wants to play with you.
(03:16):
So there's that.
But within one or two days afterthat event of her stopping by,
he had another seriousself-harming incident, shortly
after my last episode.
I gave him a bath, he was fine.
He was a little irritated, butthat's why I put him in the bath
and I let him calm down.
(03:36):
He was very happy with thetemperature of the water.
He was very chill, put him inbed, everything was fine.
He was actually happy, or so itseemed.
And then the next morning wouldhave been Wednesday that's the
day that we go to get ourspecialty food items on discount
at the store and we weregetting the whole conversation
going and, you know, setting thestage for him to go on his
(03:59):
special mission and get his fooditems, and I noticed it's a
little dim down here, you know,so it took me a minute to focus
on him and to really notice, butI noticed that half of his
forehead looked like he had beenhit with a board.
It was like purple and reallyfull of petechia all over the
place and just I was like whoa,what happened to your head?
(04:19):
So it turns out he had a severescratching incident after we
had put him to bed and I don'tknow when that would have
happened.
I guess I've been sleepingpretty soundly, but he was just
he - Like I said, he doesn'thave any nails, so he has to
push really hard to do the kindof damage that he did to his
head.
And after pushing so hard toget the petechia from the
scratches, I think that thepressure that he put on his skin
(04:42):
turned his entire half of hisforehead purple and it looked
flat.
I mean, it really looked likehe got clobbered with a board.
So we decided, hey, you're notgoing to the store, so he
doesn't even have pizza, whichyou know.
We like getting him thesespecialty food items because
they're treats for him, but theyalso make our lives a little
bit easier, because every mealis cooked here, we don't use the
(05:03):
microwave and we don't eat out,we don't get fast food or
anything.
So he gets a gluten-free pizzaonce a week and we'll treat him
to little gluten-free cinnamonrolls or donuts or something
like that, and that actuallymakes life a lot easier on us
when he has those as hisbreakfast snack before breakfast
, because he's very demandingfirst thing in the morning and
we're just trying to buyourselves some time to relax.
(05:26):
So when we punish him forself-harm or destruction or
anything like that, we withhold.
You know you can't go to thestore and get these food items,
but it's always us.
We're the ones that areactually suffering because he
still gets fed really well.
He eats like a king.
But instead of opening a box ofsomething that's as close to
processed as we'll get, we haveto actually cook him a full meal
(05:48):
right away.
He normally would get that fullbreakfast meal a couple hours
later and we tied him over withsomething sweet and fun.
But no, now we're trying toshow him who's boss, and here we
are having to work our assesoff a couple hours earlier every
day until the next day that heactually is able to go and get
his specialty food items fromthe store.
So hopefully he's good from nowup until Tuesday night and that
(06:12):
way we can take him and get himsome easy breakfast items and a
Saturday night dinner for nextweek.
It's funny how that happens.
No matter what, he's really notpunished, he's not suffering at
all, it's just that he has toeat different foods.
It's we're the ones that haveto do the extra work and go the
extra mile to keep him alive andmake him happy.
(06:33):
And his food turns outbeautifully.
By the way.
I mean, if you just if you wereat my house and I showed you
look at this plate, you wouldknow for sure that that was his
plate.
Everyone else's food can getmessed up.
His plate every single time isthe best food in the house.
It's gorgeous all the time.
He is well, well fed.
It snowed here the other dayand it made me think of a funny
(06:55):
little story just to share withyou real quick.
When we lived in that temporaryhouse, the school, the little
town that his school was in,also had a Walmart and, as you
know, he has a thing for littleold ladies.
He also has a thing for hisreflection.
So this was just a perfectscenario for him.
There was a little old lady inher car, about two spots over
(07:15):
from our Jeep, and he saw her inthere with her little white
hair curls and everything, andhe instantly starts giggling and
runs up to her car and startsflapping and stimming in her
window.
So now he can see her.
He knows that he startled her,which gives him another kick,
and he can see himself in themirror.
He'll look for himself anywherehe can in your glasses, your
(07:38):
sunglasses, a picture on thewall, anywhere that he can see
himself.
So now he's making the googlyface halfway at her, but also
halfway, because he can seehimself.
So now he's making the googlyface halfway at her, but also
halfway, because he could seehimself in her window.
And it's kind of I think it'slike a mind thing for him or you
know some kind of a weirdvisual depth thing, because he
can see two people, you know,looking back at him, and one of
(07:59):
them is him and anyway it was abig thing.
But I felt so bad for thelittle old lady, but there's
nothing we could do.
All we could do was stand thereand snicker and try to pull him
away from the car verbally andthank God she didn't have a
heart attack or anything.
I mean, I just feel so bad forthese little old ladies when he
goes and stems on them like that.
Another thing at that temporaryhouse that I thought was really
(08:21):
cute was that he startedquestioning when we would work
on the whiteboard in the kitchen.
He started questioning me andsaying, oh, schoolhouse,
schoolhouse, schoolhouse.
I would say yeah, yeah, this islike school in the house,
you're right, yeah.
And he never minded it.
He was like, okay, so we wouldwork on touch math and we would
just do stuff, you know, notjust words anymore, because they
(08:43):
sent us home with worksheets,or they sent him home with
worksheets from school with thetouch math problems, and he was
really good at touch math.
He was able to do adding andsubtracting three numbers on
both, so like the number 137plus the number 245, he could do
(09:03):
that in touch math and everyonewas really excited at school
about that.
So apparently that was prettygood for his level of
understanding things and so wewould just work on that when
there was some downtime, becausehe's not much for playing with
stuff unless it's video games,so I just would have, you know,
some intelligent time at thetable with him and he would call
it schoolhouse, schoolhouse.
That leads me into our decisionthat I mentioned in my last
(09:27):
episode to pull him out ofschool.
I thought, well we look, weknew that if a school couldn't
provide for him what he needed,they were supposed to bus him to
another school and foot thebill.
My spouse knew that from whenhe was first getting our son
into school I wasn't even aroundyet, so he knew that and I knew
that because he told me thestory several times.
(09:49):
So we were aware of theresponsibility the school
district has to our kids.
The thing was, we were just soconcerned with his mental state
and his well-being and hishappiness that we didn't really
feel comfortable with the ideaof him just being shipped off to
another school when theneighborhood school couldn't
(10:09):
handle it.
And we also didn't know if wewould be able to convince
everyone that they are notproviding him with what he needs
, because we don't have anyproof that they're abusing him
and that they're allowing him tobe bullied.
You know, we have the proofthat they're abusing him and
that they're allowing him to bebullied.
You know, we have the proofthat the lady said it, but we
definitely don't have proof thatthat same lady hurt his ear in
(10:30):
school.
We just didn't know and, to behonest, we were getting really
tired of fighting for all ofthis.
This has been going on formonths now with this school and
we were just tired and we wereimagining all of the things that
could happen.
And you know, when you do thatyou kind of shoot yourself in
the foot.
But also, I think it's kind ofyour due diligence, it's your
responsibility to think that way, right?
(10:51):
So I don't have any regretsreally about the way that we
were thinking, even though whenyou think negative and you kind
of box yourself into this ohwell, I don't know if it's going
to work mentality then you'repretty guaranteed that it's not
going to work, you know.
But with this watching himdecline from being so happy and
bubbly to being so broody andunhappy all the time, we were
(11:12):
just very uncomfortable with theprospect of, oh well, you know,
we'll just solve it by havingthem bus him to another school.
I don't know, that's a lot ofadjustment.
We just didn't think that itwas going to be the right idea.
So before we made our decision,we started researching all the
options and really the onlyoption was to homeschool him.
I was able to find all of thepaperwork on how to get
(11:34):
registered to homeschool and howmany hours you have to have
just all the rules.
So we decided to go withhomeschooling and I filled out
all the paperwork and wecontacted the school and told
them this isn't working.
And we told them what happenedand of course they wanted to
deny the teacher hurts me earstory.
And we just said look, we can'tlook, look at him.
(11:54):
You don't know him otherwise, Iguess.
So you don't know any different.
But this is not our boy andwe're going to get our boy back.
He's not doing well here.
So we're going to homeschoolhim for the remainder of the
year and then we'll see how itgoes for next year.
So they lost, you know, theirlittle government paycheck from
him and that's about the bestdamage we could have done to him
, I guess.
(12:15):
So we kept him home and westarted homeschooling.
Well, we attempted to starthomeschooling him.
And at homeschool, well, weattempted to start homeschooling
him.
And mostly that's me, not we.
Dad got involved when he could,but most of the time I would
send him off to work and I wouldtake care of the homeschooling.
Jacob and I already had therapport.
This is all we've ever done, alittle bit of schooling in the
kitchen, in the dining room.
So I thought, okay, this willbe great, you know, he'll know
(12:37):
that he's safe, he's with me,we're going to do something that
we've always enjoyed togetherand I think this is the way to
go.
And yes, we did weigh the prosand cons.
The cons were that he would notreceive OT and speech therapy.
He was only getting like 40minutes a month of therapy.
His needs seemed to be muchhigher in our opinions and it
(12:57):
just seemed like he was gettinga lot less therapeutic schooling
and a lot more academicschooling.
It just didn't make sense forus.
Anyway, you know why would youteach him all of this?
What is he going to do with it?
Come on, let's be real.
You know that I treat him asbest I can.
I try to make him perform.
I try to make sure that he isnot copping out of things just
(13:19):
because of his disability.
I do push him and I do expectthe best out of him.
I expect good performance, Iexpect effort.
So it's not like we're justboxing him in and saying well,
he's disabled and he'll never doanything in life.
We're just being honest withourselves.
Before we even knew the severityof his autism, we knew that he
(13:40):
was not grasping anything andthat he would be forever on
disability.
You know, we just didn'tunderstand why things were going
the way they were, even if hewasn't being abused in any way
at school.
We just felt that the best wayto teach him how to do life
would be with therapy andtherapeutic education, and we
(14:01):
just didn't feel that he wasgetting enough of it.
So we weighed all that out andwe decided that, hey look, I'm
just going to try to findalternatives to his therapies,
because maybe we can findsomeone who will give him the
amount of therapy that he needs.
So that was a new mission.
I was on to find that, and inthe meantime I got my whiteboard
all ready.
I modeled my home schoolschedule and little classroom
(14:25):
area after the school that heliked, where everything worked
well, so that it would notremind him of the school that we
were pulling him out of.
I thought that everythingshould just be brought back to a
time that made sense for all ofus and I knew that he was
really good in his other schools.
He was very happy and he didprefer a male influence.
I think he always lucked outand got male gym teachers, which
(14:47):
gave him that male influencesatisfaction.
He really responded well to themales, but he also enjoys women
as teachers.
I thought, well, you know, dadcould be the male gym teacher.
They could do some sport kindof stuff, you know.
And I thought, hey, this wasgoing to be great.
The whiteboard set up just likeschool.
I made a chart for his breakswhere, you know, he would do a
(15:10):
little bit of one thing and thenhe would get a break, and the
break he would have choice timeso he could choose whether it
was going to be an iPad or Xboxor quiet time or a nap or
jumping on the trampoline.
You know, there was just awhole list of choices and once
he would choose one for hisbreak, we would take that off of
(15:31):
the list of choices.
So he had to choose a new oneeach time.
When he tolerated this, itworked out really well.
He understood the process.
He seemed to enjoy being forcedinto choosing new things every
time instead of being allowed tochoose the same thing all the
time.
So it seemed like everythingwas really going well with that
(15:52):
when he would tolerate it.
However, he became so resistantto schooling things before we
even brought him home.
I mean, we didn't even realizehow resistant he was to the
process and the program thatthey had there at the school.
So he refused to accept myhomeschooling and I had done all
this work and all this researchand I got everything set up and
(16:15):
I made time in my workday to dothis for him.
I was very upbeat about it andvery excited to have my boy home
so I could baby him and treathim the way he deserved to be
treated and try to erase thatabuse.
Now he does not forget things.
I didn't expect him to forgetthe bad feelings.
I just expected to bring himback to the feelings that he
(16:38):
remembered and I thought thatmaybe we could outshine the bad
stuff.
But instead the bad stuff thathe just went through at that
school was overshadowing all thegood stuff that we were trying
to do for him in our homeschooland instead of him saying
schoolhouse, schoolhouse, hesaid oh, schoolhouse.
Then he would just startscreaming at me and he would
(16:59):
throw things and stomp.
He just would melt downinstantly.
So I thought, well, shit, thisisn't going to work.
And I didn't realize thathomeschooling was so unmonitored
.
So at first I was like shit,what am I going to do?
Are they going to get me fortruancy or for making him stay
home and letting him be dumb?
I mean, what are they going to?
What's going to happen?
(17:20):
I don't want to send him backto school.
My spouse said, well, we'lljust wait and see.
And my spouse did see it aswell.
I showed it to him.
Look, this is what happens whenI start school.
And it was just, it was bad.
So I started doing some moreresearch.
This is all I've ever done,ever since I've met Jacob, is
research.
So once we recognized hisresistance, I started
(17:42):
researching our alternativemethods.
You know what can we do and Ifound that there is a thing
called non-schooling, andnon-schooling I looked at it as
a way to just kind of detox himfrom what he had just been
through.
Non-schooling, I think, is alsovery close to the idea of a
Montessori school.
(18:03):
These are the ways that Ibelieve my child I think a lot
of children like mine, but I'mjust going to say right now, my
child for sure would reallyrespond well to this.
I think it would really benefithim.
The idea behind it is to notschool him obviously by the
title non-schooling but to lethim experience life, go get
(18:25):
interested in whatever catcheshis fancy.
So I thought, oh, oh, this isgreat, because he's so childish
in his mind and maybe we shouldjust do this and maybe we should
just do it forever.
I brought it up with my spouseand I explained everything to
him.
I suggest you know, if you'rehaving trouble with schooling or
(18:45):
if you're trying to homeschool,maybe look into that.
It's called non-schooling and Ithought this would be great.
Since it was still cold outside,we didn't do much by way of
non-schooling outside yet, butwe did try to take walks and we
tried to be out in nature andjust let him wander a little bit
, because we had all that landand we did that to make sure he
(19:06):
could wander and be safe.
We were just asking him hey, doyou, can you help me here?
Can you do this for me and justallowing him to live life with
us and function as a member ofthe family and not as a student?
It was going okay, but reallywe were just trying to give him
a break and we thought you know,we're going to non-school for
at least the next six monthsjust to let him detox, because
(19:28):
when he had a bad experiencewith his dad in the swimming
pool, he held on to that.
For eight or ten years hewouldn't even be in the same
swimming pool as his dad, justbecause of one little incident
that it surprised him and heattached a bad feeling to it.
So we thought, well, if this isanything like that, we need to
really just lay off of him andlet him live, just let him
(19:49):
breathe, let him live, let himcome to us and show us when he
needs input.
Whether that sounds like a goodidea or not, that was what we
were left with.
There was no other choice.
I could fight him tooth andnail every day, which is not
something I'm interested in, orI could just do the
non-schooling.
So that was a really gooddecision.
(20:10):
I thought it took a lot ofpressure off me as the parent
and the teacher.
It took a lot of pressure offeverybody.
And as soon as I was able tostart working outside, I started
a huge garden and I thoughtthis is going to be great.
I'm going to teach Jacob aboutnature and bugs and gardening
and plants and food, and youknow, I mean he was always my
(20:33):
foodie.
He loves watching me cook, heloves watching me with food, he
loves anything to do with food.
This is going to be one of ourmajor activities as we're
non-schooling.
He was very pissy about thewhole thing.
I tried to get him out there toplant my seedlings with me and I
tried to actually introduce himto soaking the seeds and
(20:54):
getting them to sprout indoorsand I tried to, you know, just
expose him to everything and hewasn't interested in anything
and which is fine because in theidea of non-schooling you're
not forcing the person to learnsomething they're not interested
in and their interests maychange day to day.
Maybe it's just not a good day,but as long as you have stuff
available for the person to goand check out you and they can
(21:18):
learn what they are interestedin and kind of build from that.
So I just kept trying and Iwould show him about laundry and
I think that's where the scaryhole came in.
He did really enjoy that.
So that became a thing.
Laundry was one of the biggestnon-schooling and homeschooling
activities that we had going onthat he would participate in.
(21:40):
It made his day.
He enjoyed doing it, great.
Well, I thought, well, let's gethim out here in the garden.
I had tried in different stagesof gardening and I just had
some cabbages popping up Wentand got him and said oh, come
out here and help me, here youcan.
And I was just going to showhim.
At the time I was not apermaculturist, I didn't know
anything about it.
So I was going to show him howto pull weeds.
(22:00):
And now I'm a permaculturistand I use the weeds.
I don't pull the weeds.
So it's a completely differentmethod now and I did try to
introduce that to him as well.
However, I'm going to go back.
So, as a regular gardener, Ibrought him out there to look at
the plants.
I wanted to show him how theywere growing and teach them the
names and what they look likewhen they're babies, and you
know the whole thing.
(22:20):
I mean, there's so much that achild can learn in the garden.
I just thought he would like it.
I get him out there in thegarden and he let me show him a
cabbage head and maybe someradishes or something.
And the next thing I know he'sstomping through my garden,
acting as if he doesn't knowwhere he's walking, but
(22:40):
deliberately smashing everysingle vegetable that was
popping up.
I know it was deliberatebecause there was plenty of
space to walk and not hurtthings, so I had to yank him out
of my garden.
He ruined a quarter of mygarden with his feet in that
short amount of time, so Iyanked him the hell out of there
(23:01):
.
He actually was not allowed inmy garden for a very long time.
After that, I just thought wasnot allowed in my garden for a
very long time.
After that, I just thought whatan asshole you know.
And that's when things startedto really click for me that this
is a different kid than Ithought it was.
He has changed, and I'mguessing that he's really that
damaged from school.
Either that or he really hatesme, and he never acts like that
(23:25):
with his dad, it's only me.
So I thought, well, there'sthat male influence.
Maybe he needs to spend somemore time with dad.
Another thing that he really didenjoy, though, was riding the
four-wheeler.
When I met them, he was, Ithink, six, and he had been
riding four-wheelers for years.
So this whole family, they havedirt bikes and four-wheelers,
(23:45):
so he always rode a four, fourwheeler, despite the noise and
everything.
He was just used to it.
He was riding them before hewas diagnosed with autism, I
think and then he was ridingthem after.
So we had a big four wheelerand we started allowing him to
ride with dad on there andeventually it didn't take too
long really.
He started driving it himselfand we would allow him to ride
(24:09):
the four-wheeler up and down thedriveway and on some trails
that we had right where we couldsee him, and he really enjoyed
that.
So that was his main thing thathe would do.
He would not participate inlife at all, but if he could
ride that four-wheeler he would,and it was amazing.
He has such an understanding ofdriving and fitting things into
spots.
I don't know about you, but Iam terrible at that, honestly.
(24:32):
If I'm outside of the car, Ican look at the car I'm getting
ready to drive and say, oh yeah,I can swing that right in there
, that's no problem.
And then I get in the car andeverything looks different and I
don't believe I can put thatcar in that spot.
But Jacob is amazing.
He will be on that four-wheelerand he'll just look like he's
not even really calculatinganything at all and he will park
(24:54):
that four-wheeler in thetightest spot perfectly.
He never bumps into anything.
He never, ever has any kind ofaccident.
He sees a spot he knows he'sgoing to fit and he'll just put
it right there.
It's really cool to watch himwith things like that.
He's very good with shootingtargets and with driving four
wheelers.
I did have a dream one time,when we were in our townhouse,
(25:14):
that he was driving our Suburban.
He would have been about 10 andI was so scared in my dream and
I woke up.
I was like, oh my gosh, jacobwas driving himself to school in
the Suburban in my dream and Iam so freaked out and we just
thought that was so funny.
And then he ends up drivinghimself around on a four wheeler
.
So I don't know.
So that is how thehomeschooling got started at our
(25:36):
house.
We went from homeschooling tonon-schooling and we supported
the non-schooling lifestyle,because it really is just life.
It's life, we know.
We were just trying to involvehim in life and let him
decompress and detox all thenegativity that he had build up
on him in that school situation.
(25:56):
And boy, does it getinteresting after that.
Let me tell you.
Just the other day, though, Isewed my first mattress back
together and he has a MyPillowtoo.
I sewed a MyPillow and amattress back together.
He has a full size mattress andit had about a two inch tear in
the top of it and I thought, oh.
(26:17):
So I told him don't touch that,leave it alone, let me fix it.
And then, as you know, 20 yearslater I got around to fixing it
.
But by the time I got my needleand thread up to his room it
was across almost the entiremattress.
So I stood there.
I don't know how long it tookme, but what was really
(26:38):
interesting is I took a lengthof thread on the needle and I
thought I was going to do justthis little two or three inch
patch and I take this wholereally long, ridiculously long
length of thread in my needle upto his room.
And then I see what hashappened and he got mad at me
that I got mad at him and madehim clean up all the foam.
(26:59):
He was acting like he didn'tknow how and like I didn't know
what I was talking about.
Anyway, it just happened that Ihad just enough thread to sew
the full mattress and the pillowand then, on my last pull
through on that pillow, thethread snapped right off the
needle.
I thought that was prettyamazing, go me.
(27:20):
And now he hasn't slept with afitted sheet or a pillowcase for
many years because he justwon't have it.
I had those little clips on itto keep it, keep the fitted
sheet on there, and he just hewas not having it.
So I had to remove the sheetsand the pillowcases from his
room for what I thought wasgoing to be forever.
And now we told him leave thaton there, don't take it off.
(27:42):
I did not put the straps onthere to hold the sheet down and
I used a pillow sham.
Not an actual pillowcase, whichwould be a lot.
I would think it'd be a loteasier to just decide to pop off
of there.
But he's left them on.
It's been since Wednesday, Ibelieve, so today's Saturday.
I'm really impressed he's lefteverything alone and he's
sleeping just fine, and younever know.
(28:09):
Also, we got his meds upped.
So I talked to his doctoryesterday and she increased his
sertraline by a half.
So he was on sertraline, whichI guess is also known as Zoloft.
He was on a 50 milligram doseof that in the morning along
with his risperidone.
Now we're going to be taking 75milligrams in the morning.
She wanted to up the risperidonefirst, but she said that you
know.
I said, well, what should I belooking out for?
She said, well, extremedrowsiness.
(28:30):
And I had just told her thathe's been doing nothing but
sleep in his room.
If he can't eat, he sleeps.
And I was concerned about it.
So I was like, well, okay, well, if that's the side effect risk
that I'm looking for and he'salready sleeping all the time,
or pretending to, I would maybelike to avoid that, if that
makes any sense to you.
And she says, oh well, let'sjust, let's just increase the
(28:51):
sertraline then instead.
Oh, great idea.
So we're going to try that.
Tomorrow will be the first daythat we're able to give him that
dose.
And, of course, ever since Imentioned that to her, he has
not wanted cannabis and he hasnot indicated that he's got the
issues that he had that I toldthe doctor about.
So it's very strange how thathappens, but I'm sure it's just
(29:16):
a fluke and we'll get himfigured out with this Sertraline
.
So that's supposed to help withhis extreme anxiety and with
the fits and the scratching andthe biting and all of that kind
of stuff.
It should help.
I guess I can feel my voicewanting to give out and I'm not
going to make you suffer througha frog on here, so it is time
for me to go.
(29:36):
I hope that you'll come backnext week and hear my next
episode.
You 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.
Please forgive my voice.
I woke up with a scratchythroat.
Hopefully we can get throughthis without me hurting your
ears too much.
I prefer to read the transcript, and you can't find the
transcript on your hostingplatform.
You can always head over topsabuzzsproutcom where you'll
(00:44):
find my transcript, show notes,links to recommended products
and also some podcastmerchandise.
I've got some coffee cups,water bottles and stickers and
stuff like that available.
If you'd like to support thepodcast or if you'd like to
point someone else in thisdirection, you can also buy me a
coffee.
A portion of the proceeds willgo into an account to help
(01:06):
another severe autism family inneed who cannot afford the
specialty therapy items, fooditems or other means of support
for their loved one.
So let's get into this.
If you ever thought I wasblowing things out of proportion
(01:27):
when I said that people look atmy child and treat my child as
if he's an alien, here's alittle story for you.
After the bad dream episode Itold you about last time, we had
another day when we woke up andhis grandfather says hey, I
think Jacob has been awake sincelike four in the morning.
He was being very loud in hisroom and he never came out, but
he was making a lot of noise andkind of yelling and stuff.
(01:48):
I think he dreams and that isnot from an outsider, that is
very much from an insider,someone who's in the house all
the time around our sonconstantly.
So there you go.
Shortly after that my spouse andson were out there in the
driveway.
The grandmother walks up to myspouse and says hi, what does
Jacob want for his birthday?
As you know, we're not reallyon great terms with her.
(02:11):
So my spouse says I don't know,ask him.
She just walks right up toJacob and doesn't even bother
trying to condition him or doany of the regular things to get
him ready to answer such aquestion.
And she just goes up to him andsays hey, what do you want for
your birthday?
So he instantly starts singingthe happy birthday song in his
(02:33):
out of tune way and that was heranswer.
She's only been out of thehouse for like I don't know,
four or five years and she hadplenty of opportunity to get to
know him and to stay in contactwith him and learn all about him
, and that's how she approacheshim.
She also stops by and dropspresents off for him I'm pretty
sure it's her and we just findthem sitting on the table.
(02:55):
No introduction, no, nothing,you know.
And of course my son's notgoing to play with anything and
I have made the request to stopdoing that and just come over
and play with him with thethings you've already gotten him
.
Stop buying him stuff becausehe doesn't use it.
He needs assistance witheverything.
He does not play on his own.
He wants to play with you.
(03:16):
So there's that.
But within one or two days afterthat event of her stopping by,
he had another seriousself-harming incident, shortly
after my last episode.
I gave him a bath, he was fine.
He was a little irritated, butthat's why I put him in the bath
and I let him calm down.
(03:36):
He was very happy with thetemperature of the water.
He was very chill, put him inbed, everything was fine.
He was actually happy, or so itseemed.
And then the next morning wouldhave been Wednesday that's the
day that we go to get ourspecialty food items on discount
at the store and we weregetting the whole conversation
going and, you know, setting thestage for him to go on his
(03:59):
special mission and get his fooditems, and I noticed it's a
little dim down here, you know,so it took me a minute to focus
on him and to really notice, butI noticed that half of his
forehead looked like he had beenhit with a board.
It was like purple and reallyfull of petechia all over the
place and just I was like whoa,what happened to your head?
(04:19):
So it turns out he had a severescratching incident after we
had put him to bed and I don'tknow when that would have
happened.
I guess I've been sleepingpretty soundly, but he was just
he - Like I said, he doesn'thave any nails, so he has to
push really hard to do the kindof damage that he did to his
head.
And after pushing so hard toget the petechia from the
scratches, I think that thepressure that he put on his skin
(04:42):
turned his entire half of hisforehead purple and it looked
flat.
I mean, it really looked likehe got clobbered with a board.
So we decided, hey, you're notgoing to the store, so he
doesn't even have pizza, whichyou know.
We like getting him thesespecialty food items because
they're treats for him, but theyalso make our lives a little
bit easier, because every mealis cooked here, we don't use the
(05:03):
microwave and we don't eat out,we don't get fast food or
anything.
So he gets a gluten-free pizzaonce a week and we'll treat him
to little gluten-free cinnamonrolls or donuts or something
like that, and that actuallymakes life a lot easier on us
when he has those as hisbreakfast snack before breakfast
, because he's very demandingfirst thing in the morning and
we're just trying to buyourselves some time to relax.
(05:26):
So when we punish him forself-harm or destruction or
anything like that, we withhold.
You know you can't go to thestore and get these food items,
but it's always us.
We're the ones that areactually suffering because he
still gets fed really well.
He eats like a king.
But instead of opening a box ofsomething that's as close to
processed as we'll get, we haveto actually cook him a full meal
(05:48):
right away.
He normally would get that fullbreakfast meal a couple hours
later and we tied him over withsomething sweet and fun.
But no, now we're trying toshow him who's boss, and here we
are having to work our assesoff a couple hours earlier every
day until the next day that heactually is able to go and get
his specialty food items fromthe store.
So hopefully he's good from nowup until Tuesday night and that
(06:12):
way we can take him and get himsome easy breakfast items and a
Saturday night dinner for nextweek.
It's funny how that happens.
No matter what, he's really notpunished, he's not suffering at
all, it's just that he has toeat different foods.
It's we're the ones that haveto do the extra work and go the
extra mile to keep him alive andmake him happy.
(06:33):
And his food turns outbeautifully.
By the way.
I mean, if you just if you wereat my house and I showed you
look at this plate, you wouldknow for sure that that was his
plate.
Everyone else's food can getmessed up.
His plate every single time isthe best food in the house.
It's gorgeous all the time.
He is well, well fed.
It snowed here the other dayand it made me think of a funny
(06:55):
little story just to share withyou real quick.
When we lived in that temporaryhouse, the school, the little
town that his school was in,also had a Walmart and, as you
know, he has a thing for littleold ladies.
He also has a thing for hisreflection.
So this was just a perfectscenario for him.
There was a little old lady inher car, about two spots over
(07:15):
from our Jeep, and he saw her inthere with her little white
hair curls and everything, andhe instantly starts giggling and
runs up to her car and startsflapping and stimming in her
window.
So now he can see her.
He knows that he startled her,which gives him another kick,
and he can see himself in themirror.
He'll look for himself anywherehe can in your glasses, your
(07:38):
sunglasses, a picture on thewall, anywhere that he can see
himself.
So now he's making the googlyface halfway at her, but also
halfway, because he can seehimself.
So now he's making the googlyface halfway at her, but also
halfway, because he could seehimself in her window.
And it's kind of I think it'slike a mind thing for him or you
know some kind of a weirdvisual depth thing, because he
can see two people, you know,looking back at him, and one of
(07:59):
them is him and anyway it was abig thing.
But I felt so bad for thelittle old lady, but there's
nothing we could do.
All we could do was stand thereand snicker and try to pull him
away from the car verbally andthank God she didn't have a
heart attack or anything.
I mean, I just feel so bad forthese little old ladies when he
goes and stems on them like that.
Another thing at that temporaryhouse that I thought was really
(08:21):
cute was that he startedquestioning when we would work
on the whiteboard in the kitchen.
He started questioning me andsaying, oh, schoolhouse,
schoolhouse, schoolhouse.
I would say yeah, yeah, this islike school in the house,
you're right, yeah.
And he never minded it.
He was like, okay, so we wouldwork on touch math and we would
just do stuff, you know, notjust words anymore, because they
(08:43):
sent us home with worksheets,or they sent him home with
worksheets from school with thetouch math problems, and he was
really good at touch math.
He was able to do adding andsubtracting three numbers on
both, so like the number 137plus the number 245, he could do
(09:03):
that in touch math and everyonewas really excited at school
about that.
So apparently that was prettygood for his level of
understanding things and so wewould just work on that when
there was some downtime, becausehe's not much for playing with
stuff unless it's video games,so I just would have, you know,
some intelligent time at thetable with him and he would call
it schoolhouse, schoolhouse.
That leads me into our decisionthat I mentioned in my last
(09:27):
episode to pull him out ofschool.
I thought, well we look, weknew that if a school couldn't
provide for him what he needed,they were supposed to bus him to
another school and foot thebill.
My spouse knew that from whenhe was first getting our son
into school I wasn't even aroundyet, so he knew that and I knew
that because he told me thestory several times.
(09:49):
So we were aware of theresponsibility the school
district has to our kids.
The thing was, we were just soconcerned with his mental state
and his well-being and hishappiness that we didn't really
feel comfortable with the ideaof him just being shipped off to
another school when theneighborhood school couldn't
(10:09):
handle it.
And we also didn't know if wewould be able to convince
everyone that they are notproviding him with what he needs
, because we don't have anyproof that they're abusing him
and that they're allowing him tobe bullied.
You know, we have the proofthat they're abusing him and
that they're allowing him to bebullied.
You know, we have the proofthat the lady said it, but we
definitely don't have proof thatthat same lady hurt his ear in
(10:30):
school.
We just didn't know and, to behonest, we were getting really
tired of fighting for all ofthis.
This has been going on formonths now with this school and
we were just tired and we wereimagining all of the things that
could happen.
And you know, when you do thatyou kind of shoot yourself in
the foot.
But also, I think it's kind ofyour due diligence, it's your
responsibility to think that way, right?
(10:51):
So I don't have any regretsreally about the way that we
were thinking, even though whenyou think negative and you kind
of box yourself into this ohwell, I don't know if it's going
to work mentality then you'repretty guaranteed that it's not
going to work, you know.
But with this watching himdecline from being so happy and
bubbly to being so broody andunhappy all the time, we were
(11:12):
just very uncomfortable with theprospect of, oh well, you know,
we'll just solve it by havingthem bus him to another school.
I don't know, that's a lot ofadjustment.
We just didn't think that itwas going to be the right idea.
So before we made our decision,we started researching all the
options and really the onlyoption was to homeschool him.
I was able to find all of thepaperwork on how to get
(11:34):
registered to homeschool and howmany hours you have to have
just all the rules.
So we decided to go withhomeschooling and I filled out
all the paperwork and wecontacted the school and told
them this isn't working.
And we told them what happenedand of course they wanted to
deny the teacher hurts me earstory.
And we just said look, we can'tlook, look at him.
(11:54):
You don't know him otherwise, Iguess.
So you don't know any different.
But this is not our boy andwe're going to get our boy back.
He's not doing well here.
So we're going to homeschoolhim for the remainder of the
year and then we'll see how itgoes for next year.
So they lost, you know, theirlittle government paycheck from
him and that's about the bestdamage we could have done to him
, I guess.
(12:15):
So we kept him home and westarted homeschooling.
Well, we attempted to starthomeschooling him.
And at homeschool, well, weattempted to start homeschooling
him.
And mostly that's me, not we.
Dad got involved when he could,but most of the time I would
send him off to work and I wouldtake care of the homeschooling.
Jacob and I already had therapport.
This is all we've ever done, alittle bit of schooling in the
kitchen, in the dining room.
So I thought, okay, this willbe great, you know, he'll know
(12:37):
that he's safe, he's with me,we're going to do something that
we've always enjoyed togetherand I think this is the way to
go.
And yes, we did weigh the prosand cons.
The cons were that he would notreceive OT and speech therapy.
He was only getting like 40minutes a month of therapy.
His needs seemed to be muchhigher in our opinions and it
(12:57):
just seemed like he was gettinga lot less therapeutic schooling
and a lot more academicschooling.
It just didn't make sense forus.
Anyway, you know why would youteach him all of this?
What is he going to do with it?
Come on, let's be real.
You know that I treat him asbest I can.
I try to make him perform.
I try to make sure that he isnot copping out of things just
(13:19):
because of his disability.
I do push him and I do expectthe best out of him.
I expect good performance, Iexpect effort.
So it's not like we're justboxing him in and saying well,
he's disabled and he'll never doanything in life.
We're just being honest withourselves.
Before we even knew the severityof his autism, we knew that he
(13:40):
was not grasping anything andthat he would be forever on
disability.
You know, we just didn'tunderstand why things were going
the way they were, even if hewasn't being abused in any way
at school.
We just felt that the best wayto teach him how to do life
would be with therapy andtherapeutic education, and we
(14:01):
just didn't feel that he wasgetting enough of it.
So we weighed all that out andwe decided that, hey look, I'm
just going to try to findalternatives to his therapies,
because maybe we can findsomeone who will give him the
amount of therapy that he needs.
So that was a new mission.
I was on to find that, and inthe meantime I got my whiteboard
all ready.
I modeled my home schoolschedule and little classroom
(14:25):
area after the school that heliked, where everything worked
well, so that it would notremind him of the school that we
were pulling him out of.
I thought that everythingshould just be brought back to a
time that made sense for all ofus and I knew that he was
really good in his other schools.
He was very happy and he didprefer a male influence.
I think he always lucked outand got male gym teachers, which
(14:47):
gave him that male influencesatisfaction.
He really responded well to themales, but he also enjoys women
as teachers.
I thought, well, you know, dadcould be the male gym teacher.
They could do some sport kindof stuff, you know.
And I thought, hey, this wasgoing to be great.
The whiteboard set up just likeschool.
I made a chart for his breakswhere, you know, he would do a
(15:10):
little bit of one thing and thenhe would get a break, and the
break he would have choice timeso he could choose whether it
was going to be an iPad or Xboxor quiet time or a nap or
jumping on the trampoline.
You know, there was just awhole list of choices and once
he would choose one for hisbreak, we would take that off of
(15:31):
the list of choices.
So he had to choose a new oneeach time.
When he tolerated this, itworked out really well.
He understood the process.
He seemed to enjoy being forcedinto choosing new things every
time instead of being allowed tochoose the same thing all the
time.
So it seemed like everythingwas really going well with that
(15:52):
when he would tolerate it.
However, he became so resistantto schooling things before we
even brought him home.
I mean, we didn't even realizehow resistant he was to the
process and the program thatthey had there at the school.
So he refused to accept myhomeschooling and I had done all
this work and all this researchand I got everything set up and
(16:15):
I made time in my workday to dothis for him.
I was very upbeat about it andvery excited to have my boy home
so I could baby him and treathim the way he deserved to be
treated and try to erase thatabuse.
Now he does not forget things.
I didn't expect him to forgetthe bad feelings.
I just expected to bring himback to the feelings that he
(16:38):
remembered and I thought thatmaybe we could outshine the bad
stuff.
But instead the bad stuff thathe just went through at that
school was overshadowing all thegood stuff that we were trying
to do for him in our homeschooland instead of him saying
schoolhouse, schoolhouse, hesaid oh, schoolhouse.
Then he would just startscreaming at me and he would
(16:59):
throw things and stomp.
He just would melt downinstantly.
So I thought, well, shit, thisisn't going to work.
And I didn't realize thathomeschooling was so unmonitored
.
So at first I was like shit,what am I going to do?
Are they going to get me fortruancy or for making him stay
home and letting him be dumb?
I mean, what are they going to?
What's going to happen?
(17:20):
I don't want to send him backto school.
My spouse said, well, we'lljust wait and see.
And my spouse did see it aswell.
I showed it to him.
Look, this is what happens whenI start school.
And it was just, it was bad.
So I started doing some moreresearch.
This is all I've ever done,ever since I've met Jacob, is
research.
So once we recognized hisresistance, I started
(17:42):
researching our alternativemethods.
You know what can we do and Ifound that there is a thing
called non-schooling, andnon-schooling I looked at it as
a way to just kind of detox himfrom what he had just been
through.
Non-schooling, I think, is alsovery close to the idea of a
Montessori school.
(18:03):
These are the ways that Ibelieve my child I think a lot
of children like mine, but I'mjust going to say right now, my
child for sure would reallyrespond well to this.
I think it would really benefithim.
The idea behind it is to notschool him obviously by the
title non-schooling but to lethim experience life, go get
(18:25):
interested in whatever catcheshis fancy.
So I thought, oh, oh, this isgreat, because he's so childish
in his mind and maybe we shouldjust do this and maybe we should
just do it forever.
I brought it up with my spouseand I explained everything to
him.
I suggest you know, if you'rehaving trouble with schooling or
(18:45):
if you're trying to homeschool,maybe look into that.
It's called non-schooling and Ithought this would be great.
Since it was still cold outside,we didn't do much by way of
non-schooling outside yet, butwe did try to take walks and we
tried to be out in nature andjust let him wander a little bit
, because we had all that landand we did that to make sure he
(19:06):
could wander and be safe.
We were just asking him hey, doyou, can you help me here?
Can you do this for me and justallowing him to live life with
us and function as a member ofthe family and not as a student?
It was going okay, but reallywe were just trying to give him
a break and we thought you know,we're going to non-school for
at least the next six monthsjust to let him detox, because
(19:28):
when he had a bad experiencewith his dad in the swimming
pool, he held on to that.
For eight or ten years hewouldn't even be in the same
swimming pool as his dad, justbecause of one little incident
that it surprised him and heattached a bad feeling to it.
So we thought, well, if this isanything like that, we need to
really just lay off of him andlet him live, just let him
(19:49):
breathe, let him live, let himcome to us and show us when he
needs input.
Whether that sounds like a goodidea or not, that was what we
were left with.
There was no other choice.
I could fight him tooth andnail every day, which is not
something I'm interested in, orI could just do the
non-schooling.
So that was a really gooddecision.
(20:10):
I thought it took a lot ofpressure off me as the parent
and the teacher.
It took a lot of pressure offeverybody.
And as soon as I was able tostart working outside, I started
a huge garden and I thoughtthis is going to be great.
I'm going to teach Jacob aboutnature and bugs and gardening
and plants and food, and youknow, I mean he was always my
(20:33):
foodie.
He loves watching me cook, heloves watching me with food, he
loves anything to do with food.
This is going to be one of ourmajor activities as we're
non-schooling.
He was very pissy about thewhole thing.
I tried to get him out there toplant my seedlings with me and I
tried to actually introduce himto soaking the seeds and
(20:54):
getting them to sprout indoorsand I tried to, you know, just
expose him to everything and hewasn't interested in anything
and which is fine because in theidea of non-schooling you're
not forcing the person to learnsomething they're not interested
in and their interests maychange day to day.
Maybe it's just not a good day,but as long as you have stuff
available for the person to goand check out you and they can
(21:18):
learn what they are interestedin and kind of build from that.
So I just kept trying and Iwould show him about laundry and
I think that's where the scaryhole came in.
He did really enjoy that.
So that became a thing.
Laundry was one of the biggestnon-schooling and homeschooling
activities that we had going onthat he would participate in.
(21:40):
It made his day.
He enjoyed doing it, great.
Well, I thought, well, let's gethim out here in the garden.
I had tried in different stagesof gardening and I just had
some cabbages popping up Wentand got him and said oh, come
out here and help me, here youcan.
And I was just going to showhim.
At the time I was not apermaculturist, I didn't know
anything about it.
So I was going to show him howto pull weeds.
(22:00):
And now I'm a permaculturistand I use the weeds.
I don't pull the weeds.
So it's a completely differentmethod now and I did try to
introduce that to him as well.
However, I'm going to go back.
So, as a regular gardener, Ibrought him out there to look at
the plants.
I wanted to show him how theywere growing and teach them the
names and what they look likewhen they're babies, and you
know the whole thing.
(22:20):
I mean, there's so much that achild can learn in the garden.
I just thought he would like it.
I get him out there in thegarden and he let me show him a
cabbage head and maybe someradishes or something.
And the next thing I know he'sstomping through my garden,
acting as if he doesn't knowwhere he's walking, but
(22:40):
deliberately smashing everysingle vegetable that was
popping up.
I know it was deliberatebecause there was plenty of
space to walk and not hurtthings, so I had to yank him out
of my garden.
He ruined a quarter of mygarden with his feet in that
short amount of time, so Iyanked him the hell out of there
(23:01):
.
He actually was not allowed inmy garden for a very long time.
After that, I just thought wasnot allowed in my garden for a
very long time.
After that, I just thought whatan asshole you know.
And that's when things startedto really click for me that this
is a different kid than Ithought it was.
He has changed, and I'mguessing that he's really that
damaged from school.
Either that or he really hatesme, and he never acts like that
(23:25):
with his dad, it's only me.
So I thought, well, there'sthat male influence.
Maybe he needs to spend somemore time with dad.
Another thing that he really didenjoy, though, was riding the
four-wheeler.
When I met them, he was, Ithink, six, and he had been
riding four-wheelers for years.
So this whole family, they havedirt bikes and four-wheelers,
(23:45):
so he always rode a four, fourwheeler, despite the noise and
everything.
He was just used to it.
He was riding them before hewas diagnosed with autism, I
think and then he was ridingthem after.
So we had a big four wheelerand we started allowing him to
ride with dad on there andeventually it didn't take too
long really.
He started driving it himselfand we would allow him to ride
(24:09):
the four-wheeler up and down thedriveway and on some trails
that we had right where we couldsee him, and he really enjoyed
that.
So that was his main thing thathe would do.
He would not participate inlife at all, but if he could
ride that four-wheeler he would,and it was amazing.
He has such an understanding ofdriving and fitting things into
spots.
I don't know about you, but Iam terrible at that, honestly.
(24:32):
If I'm outside of the car, Ican look at the car I'm getting
ready to drive and say, oh yeah,I can swing that right in there
, that's no problem.
And then I get in the car andeverything looks different and I
don't believe I can put thatcar in that spot.
But Jacob is amazing.
He will be on that four-wheelerand he'll just look like he's
not even really calculatinganything at all and he will park
(24:54):
that four-wheeler in thetightest spot perfectly.
He never bumps into anything.
He never, ever has any kind ofaccident.
He sees a spot he knows he'sgoing to fit and he'll just put
it right there.
It's really cool to watch himwith things like that.
He's very good with shootingtargets and with driving four
wheelers.
I did have a dream one time,when we were in our townhouse,
(25:14):
that he was driving our Suburban.
He would have been about 10 andI was so scared in my dream and
I woke up.
I was like, oh my gosh, jacobwas driving himself to school in
the Suburban in my dream and Iam so freaked out and we just
thought that was so funny.
And then he ends up drivinghimself around on a four wheeler
.
So I don't know.
So that is how thehomeschooling got started at our
(25:36):
house.
We went from homeschooling tonon-schooling and we supported
the non-schooling lifestyle,because it really is just life.
It's life, we know.
We were just trying to involvehim in life and let him
decompress and detox all thenegativity that he had build up
on him in that school situation.
(25:56):
And boy, does it getinteresting after that.
Let me tell you.
Just the other day, though, Isewed my first mattress back
together and he has a MyPillowtoo.
I sewed a MyPillow and amattress back together.
He has a full size mattress andit had about a two inch tear in
the top of it and I thought, oh.
(26:17):
So I told him don't touch that,leave it alone, let me fix it.
And then, as you know, 20 yearslater I got around to fixing it
.
But by the time I got my needleand thread up to his room it
was across almost the entiremattress.
So I stood there.
I don't know how long it tookme, but what was really
(26:38):
interesting is I took a lengthof thread on the needle and I
thought I was going to do justthis little two or three inch
patch and I take this wholereally long, ridiculously long
length of thread in my needle upto his room.
And then I see what hashappened and he got mad at me
that I got mad at him and madehim clean up all the foam.
(26:59):
He was acting like he didn'tknow how and like I didn't know
what I was talking about.
Anyway, it just happened that Ihad just enough thread to sew
the full mattress and the pillowand then, on my last pull
through on that pillow, thethread snapped right off the
needle.
I thought that was prettyamazing, go me.
(27:20):
And now he hasn't slept with afitted sheet or a pillowcase for
many years because he justwon't have it.
I had those little clips on itto keep it, keep the fitted
sheet on there, and he just hewas not having it.
So I had to remove the sheetsand the pillowcases from his
room for what I thought wasgoing to be forever.
And now we told him leave thaton there, don't take it off.
(27:42):
I did not put the straps onthere to hold the sheet down and
I used a pillow sham.
Not an actual pillowcase, whichwould be a lot.
I would think it'd be a loteasier to just decide to pop off
of there.
But he's left them on.
It's been since Wednesday, Ibelieve, so today's Saturday.
I'm really impressed he's lefteverything alone and he's
sleeping just fine, and younever know.
(28:09):
Also, we got his meds upped.
So I talked to his doctoryesterday and she increased his
sertraline by a half.
So he was on sertraline, whichI guess is also known as Zoloft.
He was on a 50 milligram doseof that in the morning along
with his risperidone.
Now we're going to be taking 75milligrams in the morning.
She wanted to up the risperidonefirst, but she said that you
know.
I said, well, what should I belooking out for?
She said, well, extremedrowsiness.
(28:30):
And I had just told her thathe's been doing nothing but
sleep in his room.
If he can't eat, he sleeps.
And I was concerned about it.
So I was like, well, okay, well, if that's the side effect risk
that I'm looking for and he'salready sleeping all the time,
or pretending to, I would maybelike to avoid that, if that
makes any sense to you.
And she says, oh well, let'sjust, let's just increase the
(28:51):
sertraline then instead.
Oh, great idea.
So we're going to try that.
Tomorrow will be the first daythat we're able to give him that
dose.
And, of course, ever since Imentioned that to her, he has
not wanted cannabis and he hasnot indicated that he's got the
issues that he had that I toldthe doctor about.
So it's very strange how thathappens, but I'm sure it's just
(29:16):
a fluke and we'll get himfigured out with this Sertraline
.
So that's supposed to help withhis extreme anxiety and with
the fits and the scratching andthe biting and all of that kind
of stuff.
It should help.
I guess I can feel my voicewanting to give out and I'm not
going to make you suffer througha frog on here, so it is time
for me to go.
(29:36):
I hope that you'll come backnext week and hear my next
episode.
You hang in there, you're asuperhero.
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