February 12, 2025 • 31 mins
This episode explores the complexities of parenting a child with severe autism, focusing on behavioral observations, shifts in household control, and the impact of communication. Throughout the conversation, the host reflects on personal experiences, shares strategies, and offers insights that encourage connection and understanding among listeners.
• Observing and interpreting muscle twitching behaviors
• Discussing the role and effectiveness of pharmaceuticals
• The positive impacts of structured control in household dynamics
• Celebrating Jacob's new communicative expressions
• Addressing the obsession with dad and respect for boundaries
• Misunderstandings surrounding non-sexual behaviors in therapy
• Reflecting on identity loss and caregiver challenges
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Episode Transcript
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Speaker 1 (00:18):
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
I've got a lot of differentthings I'm going to cover today.
They're just coming to my mind.
I've got a little list here andI hope you'll bear with me.
Hopefully, we can form thisinto some kind of meaningful
episode.
If you would prefer to read thetranscript and you can't find
(00:38):
the transcript on your hostingplatform, you can always head
over to psa.
buzzsprout.
com where you'll find mytranscript, show notes, links to
recommended products and alsosome podcast merchandise.
I've got some coffee cups,water bottles and stickers and
stuff like that available, ifyou'd like to support the
(00:58):
podcast or if you'd like topoint someone else in this
direction, you can also buy me acoffee.
So let's get into this.
I first wanted to mention thatI've noticed over the past, I
don't know, six to 12 months,that when Jacob sits down to
watch a show with us orsomething, about 80% of the time
he will have these really longmuscle twitch things going on.
(01:21):
It's I don't know.
It's almost like he's wringingout a sponge and it's only on
his right arm and it will stopif I ask him to stop.
But he'll just sit therequietly and it almost makes his
whole body twitch just by therotation of his arm while he's
sitting.
And it's just.
It's really strange.
And today, just about an hourago, he was sitting here in the
(01:42):
side chair next to us.
We were watching some show onTV and his arm was doing this
thing.
He all of a sudden just reachedout and grabbed onto his dad's
foot and said oh, squeeze it.
And I kind of think that maybeit's like one of those urges,
because he usually would havesomething in his hand and he
doesn't carry anything in hishand lately and he's always
(02:03):
tense, he's like a piece ofrebar walking around.
I think that.
I don't know.
I feel like it's that maybethat buildup of lactic acid or
something related to hisstimming and his muscle tension
that he's always under.
That's why we get him a massageonce a month with his
disability money, because he'sjust so tense and I feel like
it's got to hurt on some level.
(02:24):
But this twitching is strangeto me.
I don't know what it is, but ifyou have seen this in your
child and you have any insighton that, I'm interested.
I've been wondering lately aboutpharmaceuticals again, because
when we got him on hispharmaceuticals they said you
have to give it four to sixweeks and we'll see how it is
affecting him.
It takes four to six weeks tobuild up in his system and start
(02:45):
working.
And then recently, when we hadone of his prescriptions
increased, she said well, youhave to wait four to six weeks
and we'll see how it's affectinghim.
It still has to build up in asystem for four to six weeks
before we see the change.
So I'm wondering he's been onthis medicine for geez, I think
close to three years perhaps,and it takes four to six weeks
(03:07):
to build up.
But then it doesn't.
It just stays at an even keel,is what I think I understand
about it.
And now he's got even more ofone, that's he's never had
medication ever in his system,ever.
Why is that?
It can build up for four to sixweeks and you can take it for
(03:30):
three years and you can build itup again and increase for
another four to six weeks, butduring that whole time every
morning is a nightmare.
How is that possible?
How is it that he could justwake up and you wish that he was
medicated in his sleep?
I don't Get that.
That doesn't make any sense tome.
I also have noticed, though,that some days, especially
(03:51):
lately, he's been great duringwake up, and I'm starting to
wonder if my friend is right.
I was telling her about allthese things that have been
happening, and she said I thinkit's related to the new pattern
in the household.
I feel like maybe she's correcton that, because the new
pattern is.
Over the past week, I finally Itold my spouse look, you just
have to stop doing things for meto take over.
(04:12):
The more that you're doing, theless, I'm going to think, needs
to be done.
I just really need you to stopdoing stuff so that I can do the
stuff and take control of myhousehold again.
So we've come to this decision,and now, over the past four
days, I have been in pretty muchcomplete control, and I think
that it's affecting Jacob'sbehavior positively.
(04:32):
So woo-woo for that.
I'm so excited.
He has been very nice for threeout of the four mornings of this
week that I've been in control,and I was wondering if perhaps
the change in his attitude canbe attributed to the change of
who's in control, because mycontrol is orderly and his dad's
(04:54):
control is chaotic, and this isjust regarding caring for Jacob
, basically running thehousehold.
So we're talking food, dishes,kitchen and rules.
Basically, when his dad's inthe kitchen, he is completely
allowed to basically do whateverhe wants and to disrespect his
dad's wishes.
If his dad says stop touchingmy butt, stop saying dad, dad,
(05:16):
dad, stop harassing me, don'tstand so close to me.
He's allowed to break everyboundary, he's allowed to ignore
every request.
He just doesn't do what he'ssupposed to do when his dad is
running the show in the kitchen.
So I've taken back over and hehas fallen right in line,
meaning he knows oh, she's inthe kitchen, I'm not allowed in
there.
I'm going to go sit down and hecan go in the other room see me
(05:39):
through the window that's inthe wall and he'll just sit on
the couch quietly for as long asit takes me to be in and out of
the kitchen, and I really justlove that for both of us.
I think that it's kind of likewhen you take him to the grocery
store or even outside thebigger the space you put him in,
the more he feels responsiblefor filling that space with
(06:00):
himself and I feel like the lackof control that his dad has
while he's doing the Mr Momstuff is actually just like a
big empty room for Jacob,whereas the level of control
that I have when I'm doing themom stuff is so structured that
he feels that he is taking upjust enough space.
And I don't know why, but hehas seemed so happy and just the
(06:23):
other day, like when herealized that I was pretty much
in control of meals it was thesecond dinner that I cooked this
week he was just like I'm sohappy, I love this meals.
It was the second dinner that Icooked this week.
He was just like I'm so happy,I love this food.
It was a little more brokenthan that, but he did actually
pull out full sentences and theywere joyful and grateful and
he's been that way all week.
He had a rough morningyesterday and I don't know why,
(06:45):
but we're not the only people inthe house, so I have a feeling
that perhaps he was influencedby someone, but after he let his
medicine kick in and everything, he was cool and he's been good
all week.
I'm grateful.
I just wanted to share that goodnews.
I am more grateful and I'mfunctioning better and our
household is functioning better,because when his dad was in
(07:05):
control of doing the meals andthe dishes and keeping the
kitchen clean.
The dishes weren't done, thekitchen wasn't clean and the
meals made him miserable and hewould stand up there and take
all the abuse from his son andthen come down here into our
quiet area stomping and moaningand bitching and having a
headache and not feeling goodand just being completely
(07:26):
stressed out, which, yeah, thatstresses me out.
So it was just absoluteunwanted chaos and I am really
happy to be back in control.
Yes, it means I work harder andI do more.
It means his dad gets to playmore, but you know I really
don't care, because if I have todeal with all of that, I still
don't get to play.
You know I don't get any timefor myself where I can breathe.
(07:50):
So I'm happy to report thatwe're back in control and it
seems to be affecting Jacobpositively.
I think that he is showinggratitude in his actions.
So there's something he haddeveloped a few months ago, a
new way of trying to extendinteraction between all of us,
instead of him just saying da,da, da da, love you, love you,
(08:11):
love you, love you.
Now he cause he knows we'regoing to say use new words and
I'm done with love you right now.
I'm all done with love you.
That is our constant answer.
When he sees us getting tiredof him saying dad, dad, dad, dad
.
Now he'll say I want to talk toyou.
Hey, Shandell, I want to talkto you.
Hey, dad, can I talk to you?
And we're like, oh wow, this isgood.
(08:32):
What's going on?
Yes, yes, you can talk to me.
Talk, go ahead.
Yes, I am listening, I'm herefor you.
And we'll give him full eyecontact, full attention, and
he'll say hi or love you.
But he's just.
I can see that he's just tryingto extend the interaction before
he gets shut down for using thesame words.
So we're now trying to teachhim that when you ask for the
floor and you're given the floor, you have to produce something
(08:56):
of substance to keep the floor.
Otherwise we're going back towhat we were doing.
That's an ongoing process, buthis newest stuff, since I've
started cooking the majority ofthe meals and everything, is hey
, look, watch this, watch, lookat me, hey, look at me, watch me
, I'm dancing.
And then he'll do this weirdlittle dance and face and he'll
say ooh, ooh.
(09:17):
I don't know.
I don't know if this is justhim being grateful or it's cute,
though I wish he had an outlet,because he's always saying that
he's dancing and I still amsearching for some kind of
theater group that would allowhim to be his weirdest self and
provide him the space for thatand for the loudness that goes
with it.
I would really love to findsomething more geared towards
(09:40):
that, but I think it's reallycute that he's now more
concerned with showing us hisnew dance moves than he is with
breaking the walls or whateverdestructive stuff he was doing
before.
As I've mentioned through all ofthese episodes, pretty much he
is very obsessed with his dad.
His newest thing it's gettingmore and more invasive each time
(10:03):
, and it has been going on forseveral months as well is he
will get pretty muchface-to-face with his dad.
He knows to try to stay anarm's length away from me.
He's still trying to break thatboundary a little bit, but I
will straight up put my arm outand if it hits him, it hits him
and he knows to get back.
But he won't give his dad thatspace.
So he's been gettingnose-to-nose with his dad first
(10:24):
thing in the morning, notbrushing his teeth, just coming
straight up to him while we'resitting there having coffee and
hey dad, and then he'll hang hismouth open and loll his tongue
out the you know, and he'll justbreathe.
He'll slurp breathe, like withhis tongue hanging out, and
he'll breathe through the sidesof his mouth and make a slurping
sound.
It's really disgusting.
(10:44):
And he'll just do that right inhis dad's face and his dad
allows it and the other day wedecided that we're going to not
allow that anymore and he wouldnot stop.
He was like just really pursuingthe breaking of that boundary,
just totally disrespecting hisdad's wishes for personal space.
And the more that we stood ourground, the more he stood his
(11:04):
ground and tried to push throughand it was just awful.
I don't know what his problemwas that day, but that was the
day I said he had a roughmorning.
It was just dumb.
I don't understand why he'sdoing that, but we're trying
right now to get him tounderstand that dad deserves the
same amount of respect that Ido.
I don't know.
I don't know what it is withhim, but this obsession with his
(11:25):
dad is so bad and so deep andlong running that way, back when
he first started therapy thetherapy I just told you about
recently.
Their primary focus after thefirst 30 days of getting to know
him was to get him lessobsessed with his dad.
That was actually their focus.
They would therapy him for alittle while and say now in 10
(11:46):
minutes, we want dad to walkthrough the room as he's getting
ready for work.
We just want dad to walkthrough the room as he's getting
ready for work, we just wantdad to walk through the kitchen
into the other room.
And the goal is to make Jacobcontinue eye contact with the
therapists and continue thetherapy that he's in the middle
of and get used to his dad beingaround and stop obsessing.
They were working on that andit was really hard.
(12:09):
Things got really rough on thatin regular life around therapy.
It was so hard.
But yeah, this has been goingon for a really long time and it
just it's very, very strangethat he's so obsessed with his
dad and he needs his dad to bekind of like the disciplinarian
and the playmate, but he doesn'trespect his boundaries and he
doesn't respect anything that hesays.
(12:31):
Unless he thinks he's gettinghis dad angry, then it's
different.
But you know, just like upthere in the kitchen, he will
not respect anything.
But I just don't know.
I don't understand it at all.
Before all that therapy startedwe were lucky enough to find
that one non-profit for autismwhen I started bringing him
there.
That's where we learned that hehad trouble with changing of
thresholds and the lady that wasrunning that she's really great
(12:54):
.
She observed him for a whileand she was educating us more
than we had ever been educatedon autism before and she said
that what he's doing right therethat is not autism.
And we were very confusedbecause she said that he's a lot
, he's super autistic.
We hadn't had the evaluationsyet.
We were surprised to learn theseparation between things we I
(13:15):
don't know.
We just felt like this is him.
When we got accepted into thistherapy group, we were very
grateful for her observation andher techniques and her advice
and assessments of our son,because he hadn't been assessed
by any psychologist in a verylong time.
We hadn't gone through theautism scales yet or anything
like that for therapy.
We were not able to do that yetbecause of the waiting list and
(13:39):
this lady taught us so manythings about his autism.
She observed a lot of hisbehaviors that he was having
that were negative and veryunwelcomed, and she told us what
he's doing right now, righthere in this part of life, is
not autism.
We were shocked.
We're like what?
And she says this is behaviorand, more specifically, this is
(14:02):
attention seeking behavior.
And we had not had anyeducation on any of this.
So we were very interested inlearning more and we kept
bringing him in for her therapy.
It was really great to be ableto go there.
So we learned that all thenegative stuff he was doing that
would heighten a response fromone of us or from anyone was not
(14:23):
autism and it was completelyvoluntary and it was
attention-seeking behavior fornegative attention.
And I said well, why?
Why does he want negativeattention?
He always wants love, he lovesto cuddle.
He's just a weird cuddly personLike.
He loves affection and positiveattention.
Why would he want to go andmake us angry and seek negative
(14:46):
attention when he gets all kindsof attention at home?
He gets anything that he wants.
Why does he want to getnegative attention?
He gets all kinds of attentionat home.
He gets anything that he wants.
Why does he want to getnegative attention?
And she said it's the high.
It's like an adrenaline rushfor him, the closer he can get
to the edge of what he perceivesas the cliff of anger with you
guys, the happier he is, andthat's where he wants to live.
(15:06):
He wants to live on the edge ofdisaster, and this is his way
of doing it.
So you have to stop giving itto him, and that's when I just
started educating everyone inour life If he's acting like
this or he's trying to get youmad, don't even look at him.
Don't give it to him.
Don't give him what he wants.
All he wants is for you to getmad.
He wants to think that you'remad and that you're going to
(15:28):
yell at him or do something thatis negative.
He's feeding on that.
Don't give it to him.
That was a huge lesson for us,and it's when we started to
understand that behaviors arenot autism that changed our
approach to a lot of differentthings, which I'm sure will come
out in many of my futureepisodes.
We were eventually invited tothis autism group's swim therapy
(15:51):
, which was really nice.
She kept it close to her vest.
We didn't even know that theydid this, but she had a swim
therapy class that met once aweek at a local hotel.
After seeing him for a while, Idrove 40 minutes a day to give
him a couple hours of hertherapy and attention each day.
She finally invited us to thistherapeutic swim and during swim
(16:15):
she found that most of the kidswith autism that were in this
group were very receptive to hertherapies while they were in
water, which makes a lot ofsense to me because our boy
loves water.
So we were really happy to getthis invitation and I took him.
It's possible that all three ofus went to the first one, but I
took him once a week, everyweek.
(16:37):
The first thing I noticed wasthat I think this is when I
noticed that I had lost myidentity a bit.
I don't carry a purse and Iwould buy clothing to make up
for it.
So I showed up to the swim,just like I showed up everywhere
at that point, wearing cargopants stuffed to the brim with
supplies for Jacob, my hair in ayou know, a low ponytail in the
(16:59):
back, no makeup, not evenwearing my contacts.
I just had my glasses on, whichwere old, and I walked into the
hotel and got him into the swimarea and I saw other parents
that looked exactly like me.
We all look the same.
We all look like zookeepers iswhat my spouse said and I really
(17:19):
felt that when he said thatbecause I came home and I said
you know, all the moms dressjust like me, we're all wearing
khakis, we all look like dirtyand we all just look like shit
and we all look miserable.
Do I look that unhappy?
Because they looked reallyunhappy and they had the same
pants.
Their pockets are stuffed justlike mine.
And he says well, yeah, you alllook like zookeepers and it
(17:41):
makes sense, you kind of are andit was really funny.
But the more I went, the more Istarted to realize that this
isn't me.
What has happened to me.
One of the biggest things wasthat I sat in the far, far back
because he was so obsessed withus at the time that he wouldn't
enjoy anything if he knew wewere there.
(18:02):
So I had to pretend to leaveand I would come back in a
different door and sit way, wayin the back behind a bunch of
plants, or I would just goupstairs and look over the
balcony because I wanted him toget therapy and enjoy himself
and not pay attention to what Iwas doing.
So when I was sitting in the wayway back, I noticed that I
couldn't see anybody's faceswith my glasses on and I noticed
(18:24):
that, no matter how much Icleaned my lenses, all the
lights had halos around them andthey were blurry.
Everything was blurry and I Irealized I'm like, oh my gosh, I
have been so busy taking careof him.
I haven't been to the eyedoctor in like three years.
I can't see.
I started realizing, you know,wow, yeah, I have my own health
(18:47):
issue going on, but, holy crap,this is not me.
I look so miserable and dirtyand I can't even see.
I'm not even taking care of myown health because he's got me
so busy and depressed I can't doany more than I'm doing.
It was a hard thing for me andit took weeks for me to come
full circle on that whole thing,but I realized, wow, this is
(19:10):
hard.
I'm not doing nearly as well asI thought because I can't take
care of me.
So that was a weird thing forme to face.
But all the parents matched,except for one lady.
She was really dressed richlyall the time and I think that I
found out she was the girlfriendof a lawmaker there in that
area or something like that.
So that made sense and I washoping she would I don't know,
(19:33):
help get some things pushedthrough for autism, but I don't
think she was involved at all.
A lot of interesting thingshappened during this swim
therapy and outside of it withthe same organization, but the
thing I wanted to tell you aboutthis week is that when he got
into that group, I think thatwhen he got into that group, I
(19:57):
think he was 14.
I'm pretty sure he was 14.
He could have been 13.
I'm sorry I don't know, but Iknow he wasn't 15, and I will
tell you how later.
But he loved getting in the hottub.
He loves baths, so it madesense to me and this one day, I
don't know, the kids in thegroup were all different ages,
but it was a teen autism group,so I'm pretty sure I think he
was 14.
Anyway, they were all teenagers.
(20:18):
A couple of them were in their20s and there was this one girl
there and I'm pretty sure shewas in her 20s.
I'll tell you about her anothertime, but she was developed and
she was in the hot tub witheveryone and my son was in there
and we got a talking to abouthim being there because they
said that he was looking at herbreasts and touching himself in
(20:42):
his swimming trunks and I was soinsulted by that because my
child is nowhere near sexual.
He's not a sexual being at allAt all.
I know he thinks redheadedgirls are pretty and I can tell
because he loves all theredheaded princesses on Disney.
That's it.
Anytime he sees a redheadedcartoon he really loves them.
(21:06):
He also loved Mary-Kate andAshley.
So I don't know, they're notredheads, but I'm just saying
like that was the extent of itfor him.
And at 14 years old my son wasnot sexualized in any way and I
was insulted that a woman who isan expert on autism pinned that
(21:26):
on my son when he knows nothing.
It's like you take your ownideas and corruption and
whatever exposure that you'vehad in your life and you put it
on my kid and now you havelabeled him with a sexual
misconduct of sorts and hedidn't mean any of it.
And I know that because I well,first of all, I was there and I
(21:51):
saw him over there and he didnothing different than he would
do to anyone else.
It's just that she was sittingdown and he's taller and he was
squatting in the water.
You know how you do it to getin the water, but you're not
sitting yet, and he just hewould go up to everyone and say
hi, hi, hi, hi, hi, hi.
That was all he did back thenand he would jump.
(22:13):
And one of the things that hedid when he jumped was flop his
junk around with his hand.
And it's not sexual at all.
It started at our house.
He had a huge, huge mirror inhis bathroom and he would spend
hours up there entertaininghimself naked in front of the
mirror and I could hear himlaughing all day long and I just
(22:36):
, you know, whatever go ahead,whatever makes you happy.
But I did see what he was doingone time and it was hilarious.
He was cracking himself up.
He would just stand there nakedand it was the big mirror on
the wall, huge.
You could see almost your wholeself in the mirror, but it was
a big wall mirror and then therewas the sink and countertop in
front of it.
So in order to see your wholeself, you had to jump up a
(22:57):
little bit.
So he would jump up a littlebit to see his whole self,
because he's a peacock like that.
He noticed that his junkflopped when he did it and then
he noticed that he could give ita bigger flop if he just
flicked it a little bit with hishand.
That was his bathroom activity.
(23:22):
It wasn't sexual, it wasn'tanything.
He just was playing with hisreflection and laughing.
And I don't blame him, I don'tknow.
I just I get it.
I think that's funny too, youknow.
So he got accused of staring ather chest and jumping up and
down and saying hi, hi, hi andfondling himself at the same
time.
And I was like he doesn't knowboobs, he doesn't know breasts,
(23:43):
he doesn't know sex at all.
We tried to have the talk withhim.
He doesn't get it, he's notthere.
The school tried to make ussign paperwork for him to take
sex ed or whatever, and hedoesn't know anything.
I couldn't put him in sex edbecause he didn't fit, you know
it.
Just it wasn't age appropriate,honestly, because he's not 14
(24:05):
at that time, he's still five,you know it just doesn't, it
didn't fit.
So I never did put him throughsex ed.
He never saw women getsexualized.
He's never shown any kind ofinterest in a woman, whether on
the silver screen or in reallife.
He only is attracted topeople's eyes because if he gets
(24:26):
close enough to your eyes hecan see himself.
He is in love with his ownreflection.
He doesn't care about you oryour tits, he just wants to see
himself everywhere he can.
So I was really insulted and Iwas just shocked that that's
where this lady took it, withouteven knowing him very well at
(24:47):
all.
You just assume that my son issexualizing another person.
He never did Never.
And he has since been accusedof that a couple other times and
it's never been the thing.
One time, when he went back toschool, he was working with an
aide, and I don't know if it'sbefore we pulled him out or
(25:08):
after, but I remember he has tohave a one-on-one aide and it
got to where he needed twoone-on-one aids.
But during school, working withhis aid, put his hand on her
heart, her chest, as they said.
I think they said it was on herbreast.
But he knows where the heart isand if you touch his heart, he
(25:32):
will touch your heart.
And also, if he thinks thatyou're sad or that you can't
breathe or that you're out ofbreath or something like that,
he will touch your heart orhe'll do his best, because he
touches his own heart when hehas too much activity and his
heart is beating rapidly.
He also knows that feelingslive there and if he senses that
(25:54):
you're sad or if he's trying tocommunicate to you that he is
having feelings, he will touchyour heart, not your breasts.
He will touch your upperportion of your chest, where he
believes your heart is.
He doesn't mean anything sexualby this at all.
He's just, I don't know, beingcompassionate.
And everyone seems to thinkthat people with autism have no
(26:17):
compassion, I guess, and that ifthey touch you in an area where
most of us believe is relatedto love, well they must be
molesting you because they don'thave feelings.
And I really resent thatoutlook towards my child Because
, as I said, even now, at 24,I've never seen him ever get
(26:38):
gazunga eyes at any woman ever.
And I mean, when you get past acertain age, your parents start
to wish that you would show alittle bit of interest in
something or someone, eventhough he's obviously he's not
going to have a relationship.
I mean, yeah, I have people say, oh, you never know.
(27:00):
Yes, I pretty much know he'llnever do certain things and I'm
tired of people telling me thatI don't know this.
I know what it takes tofunction in society and he ain't
got it, but you just kind ofwish that you knew whether he
was attracted to people or not.
You know, because it's a, it'spart of the human experience and
there's so much of the humanexperience that he's missing out
on because of his severe autism.
(27:22):
And sometimes you just wonderdoes he think any of those girls
are attractive?
Is he going to have a tell whenhe thinks that someone's pretty
?
Or does he feel attraction?
Is he affected by beauty orwhat he perceives to be
beautiful?
Does any of this register withhim or what's going on in there?
(27:45):
So you do wonder, and asclosely as we have watched him,
we have never, ever seen himchange from a five-year-old to a
horny 18 or 20 year old, never,never.
I have another story about thatfor you another time, but I was
pretty pissed off about that.
In my next episode I've got acouple other misjudgments and
(28:06):
misinformation bits that camefrom this experience at the
nonprofit autism place, but Iwas pretty sad about that.
That that's where it went formy kid.
I don't know what it is withhim shaking his junk all around
without his clothes on, though Imean, I know that he thinks
it's funny, but yesterday he washaving such a bad morning and
(28:28):
he I don't know who he got madat.
It might have been that hisgrandpa was in the house.
He likes to have the house tohimself for a while when he
wakes up and he doesn't get thatall the time, and I think
that's a lot of it.
But he was just having a badtime.
All of a sudden we hear weusually can hear it if he's
slamming his head on the wall,but we didn't hear that.
All we heard was in his bedroom.
So my spouse goes up to hisroom and as he's walking in his
(28:58):
room and trying to get him tosettle down, I hear Jake just do
a huge roar, just like the onethat he did when he dropped to
his knees in the front yard.
After I put him outside, hejust roared this hellacious roar
and his dad's like what thefuck?
And I mean it just came fromnowhere.
(29:19):
I asked Tweedledum whathappened.
He said well, he was over thereand he was hitting his head.
So I yelled at him and I don'tknow, because I usually can hear
him slamming his head on thedoor, jam right there.
And I didn't hear it.
So I don't know.
I think maybe things got blownout of proportion or something.
But after his dad got him tostop screaming and he got him to
get in his bed, we were in theliving room trying to hash
(29:41):
things out and we were only downthere for 30 seconds.
Jacob comes running out of hisroom and I had my back to the
hall and I didn't want to turnaround and give him more
attention.
So I just stood there watchingmy spouse, who was in front of
me, facing Jacob's room, and myspouse looks up and he, with a
straight face, he's like Jacob,if you want to jump and flap in
(30:02):
the hallway, can you at leastput your underwear back on?
I instantly got the image in myhead of what was going on,
because his flapping is veryviolent.
It's not the cute stuff thatyou see where you can play it
off like he's dancing orsomething.
I mean, it is a violent cardioworkout.
So when I tell you that we flapto him, if he flaps in our face
(30:25):
, we flap back.
It is hard.
We have tried it.
It's exhausting and veryviolent.
It's head to toe like you'retwang in a rubber band.
It's just ridiculous and veryviolent.
So I can see that and I knowthat he's got his underwear off
and he's just putting on quite ashow.
I never turned around, but Iwas laughing so hard even
(30:46):
without seeing it, because Ijust knew.
Well, imagine that I am out oftime again.
I am looking forward to makinganother episode next week and I
would love to hear from you ifyou have any similar experiences
or if this episode or any otherepisode has triggered a memory
or a thought or some kind of anidea with you.
I would love to know.
So feel free to send me anemail at
(31:08):
contactparentingsevereautism atgmailcom, or you can send me a
fan mail text message atpsabuzzsproutcom.
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.
I've got a lot of differentthings I'm going to cover today.
They're just coming to my mind.
I've got a little list here andI hope you'll bear with me.
Hopefully, we can form thisinto some kind of meaningful
episode.
If you would prefer to read thetranscript and you can't find
(00:38):
the transcript on your hostingplatform, you can always head
over to psa.
buzzsprout.
com where you'll find mytranscript, show notes, links to
recommended products and alsosome podcast merchandise.
I've got some coffee cups,water bottles and stickers and
stuff like that available, ifyou'd like to support the
(00:58):
podcast or if you'd like topoint someone else in this
direction, you can also buy me acoffee.
So let's get into this.
I first wanted to mention thatI've noticed over the past, I
don't know, six to 12 months,that when Jacob sits down to
watch a show with us orsomething, about 80% of the time
he will have these really longmuscle twitch things going on.
(01:21):
It's I don't know.
It's almost like he's wringingout a sponge and it's only on
his right arm and it will stopif I ask him to stop.
But he'll just sit therequietly and it almost makes his
whole body twitch just by therotation of his arm while he's
sitting.
And it's just.
It's really strange.
And today, just about an hourago, he was sitting here in the
(01:42):
side chair next to us.
We were watching some show onTV and his arm was doing this
thing.
He all of a sudden just reachedout and grabbed onto his dad's
foot and said oh, squeeze it.
And I kind of think that maybeit's like one of those urges,
because he usually would havesomething in his hand and he
doesn't carry anything in hishand lately and he's always
(02:03):
tense, he's like a piece ofrebar walking around.
I think that.
I don't know.
I feel like it's that maybethat buildup of lactic acid or
something related to hisstimming and his muscle tension
that he's always under.
That's why we get him a massageonce a month with his
disability money, because he'sjust so tense and I feel like
it's got to hurt on some level.
(02:24):
But this twitching is strangeto me.
I don't know what it is, but ifyou have seen this in your
child and you have any insighton that, I'm interested.
I've been wondering lately aboutpharmaceuticals again, because
when we got him on hispharmaceuticals they said you
have to give it four to sixweeks and we'll see how it is
affecting him.
It takes four to six weeks tobuild up in his system and start
(02:45):
working.
And then recently, when we hadone of his prescriptions
increased, she said well, youhave to wait four to six weeks
and we'll see how it's affectinghim.
It still has to build up in asystem for four to six weeks
before we see the change.
So I'm wondering he's been onthis medicine for geez, I think
close to three years perhaps,and it takes four to six weeks
(03:07):
to build up.
But then it doesn't.
It just stays at an even keel,is what I think I understand
about it.
And now he's got even more ofone, that's he's never had
medication ever in his system,ever.
Why is that?
It can build up for four to sixweeks and you can take it for
(03:30):
three years and you can build itup again and increase for
another four to six weeks, butduring that whole time every
morning is a nightmare.
How is that possible?
How is it that he could justwake up and you wish that he was
medicated in his sleep?
I don't Get that.
That doesn't make any sense tome.
I also have noticed, though,that some days, especially
(03:51):
lately, he's been great duringwake up, and I'm starting to
wonder if my friend is right.
I was telling her about allthese things that have been
happening, and she said I thinkit's related to the new pattern
in the household.
I feel like maybe she's correcton that, because the new
pattern is.
Over the past week, I finally Itold my spouse look, you just
have to stop doing things for meto take over.
(04:12):
The more that you're doing, theless, I'm going to think, needs
to be done.
I just really need you to stopdoing stuff so that I can do the
stuff and take control of myhousehold again.
So we've come to this decision,and now, over the past four
days, I have been in pretty muchcomplete control, and I think
that it's affecting Jacob'sbehavior positively.
(04:32):
So woo-woo for that.
I'm so excited.
He has been very nice for threeout of the four mornings of this
week that I've been in control,and I was wondering if perhaps
the change in his attitude canbe attributed to the change of
who's in control, because mycontrol is orderly and his dad's
(04:54):
control is chaotic, and this isjust regarding caring for Jacob
, basically running thehousehold.
So we're talking food, dishes,kitchen and rules.
Basically, when his dad's inthe kitchen, he is completely
allowed to basically do whateverhe wants and to disrespect his
dad's wishes.
If his dad says stop touchingmy butt, stop saying dad, dad,
(05:16):
dad, stop harassing me, don'tstand so close to me.
He's allowed to break everyboundary, he's allowed to ignore
every request.
He just doesn't do what he'ssupposed to do when his dad is
running the show in the kitchen.
So I've taken back over and hehas fallen right in line,
meaning he knows oh, she's inthe kitchen, I'm not allowed in
there.
I'm going to go sit down and hecan go in the other room see me
(05:39):
through the window that's inthe wall and he'll just sit on
the couch quietly for as long asit takes me to be in and out of
the kitchen, and I really justlove that for both of us.
I think that it's kind of likewhen you take him to the grocery
store or even outside thebigger the space you put him in,
the more he feels responsiblefor filling that space with
(06:00):
himself and I feel like the lackof control that his dad has
while he's doing the Mr Momstuff is actually just like a
big empty room for Jacob,whereas the level of control
that I have when I'm doing themom stuff is so structured that
he feels that he is taking upjust enough space.
And I don't know why, but hehas seemed so happy and just the
(06:23):
other day, like when herealized that I was pretty much
in control of meals it was thesecond dinner that I cooked this
week he was just like I'm sohappy, I love this meals.
It was the second dinner that Icooked this week.
He was just like I'm so happy,I love this food.
It was a little more brokenthan that, but he did actually
pull out full sentences and theywere joyful and grateful and
he's been that way all week.
He had a rough morningyesterday and I don't know why,
(06:45):
but we're not the only people inthe house, so I have a feeling
that perhaps he was influencedby someone, but after he let his
medicine kick in and everything, he was cool and he's been good
all week.
I'm grateful.
I just wanted to share that goodnews.
I am more grateful and I'mfunctioning better and our
household is functioning better,because when his dad was in
(07:05):
control of doing the meals andthe dishes and keeping the
kitchen clean.
The dishes weren't done, thekitchen wasn't clean and the
meals made him miserable and hewould stand up there and take
all the abuse from his son andthen come down here into our
quiet area stomping and moaningand bitching and having a
headache and not feeling goodand just being completely
(07:26):
stressed out, which, yeah, thatstresses me out.
So it was just absoluteunwanted chaos and I am really
happy to be back in control.
Yes, it means I work harder andI do more.
It means his dad gets to playmore, but you know I really
don't care, because if I have todeal with all of that, I still
don't get to play.
You know I don't get any timefor myself where I can breathe.
(07:50):
So I'm happy to report thatwe're back in control and it
seems to be affecting Jacobpositively.
I think that he is showinggratitude in his actions.
So there's something he haddeveloped a few months ago, a
new way of trying to extendinteraction between all of us,
instead of him just saying da,da, da da, love you, love you,
(08:11):
love you, love you.
Now he cause he knows we'regoing to say use new words and
I'm done with love you right now.
I'm all done with love you.
That is our constant answer.
When he sees us getting tiredof him saying dad, dad, dad, dad
.
Now he'll say I want to talk toyou.
Hey, Shandell, I want to talkto you.
Hey, dad, can I talk to you?
And we're like, oh wow, this isgood.
(08:32):
What's going on?
Yes, yes, you can talk to me.
Talk, go ahead.
Yes, I am listening, I'm herefor you.
And we'll give him full eyecontact, full attention, and
he'll say hi or love you.
But he's just.
I can see that he's just tryingto extend the interaction before
he gets shut down for using thesame words.
So we're now trying to teachhim that when you ask for the
floor and you're given the floor, you have to produce something
(08:56):
of substance to keep the floor.
Otherwise we're going back towhat we were doing.
That's an ongoing process, buthis newest stuff, since I've
started cooking the majority ofthe meals and everything, is hey
, look, watch this, watch, lookat me, hey, look at me, watch me
, I'm dancing.
And then he'll do this weirdlittle dance and face and he'll
say ooh, ooh.
(09:17):
I don't know.
I don't know if this is justhim being grateful or it's cute,
though I wish he had an outlet,because he's always saying that
he's dancing and I still amsearching for some kind of
theater group that would allowhim to be his weirdest self and
provide him the space for thatand for the loudness that goes
with it.
I would really love to findsomething more geared towards
(09:40):
that, but I think it's reallycute that he's now more
concerned with showing us hisnew dance moves than he is with
breaking the walls or whateverdestructive stuff he was doing
before.
As I've mentioned through all ofthese episodes, pretty much he
is very obsessed with his dad.
His newest thing it's gettingmore and more invasive each time
(10:03):
, and it has been going on forseveral months as well is he
will get pretty muchface-to-face with his dad.
He knows to try to stay anarm's length away from me.
He's still trying to break thatboundary a little bit, but I
will straight up put my arm outand if it hits him, it hits him
and he knows to get back.
But he won't give his dad thatspace.
So he's been gettingnose-to-nose with his dad first
(10:24):
thing in the morning, notbrushing his teeth, just coming
straight up to him while we'resitting there having coffee and
hey dad, and then he'll hang hismouth open and loll his tongue
out the you know, and he'll justbreathe.
He'll slurp breathe, like withhis tongue hanging out, and
he'll breathe through the sidesof his mouth and make a slurping
sound.
It's really disgusting.
(10:44):
And he'll just do that right inhis dad's face and his dad
allows it and the other day wedecided that we're going to not
allow that anymore and he wouldnot stop.
He was like just really pursuingthe breaking of that boundary,
just totally disrespecting hisdad's wishes for personal space.
And the more that we stood ourground, the more he stood his
(11:04):
ground and tried to push throughand it was just awful.
I don't know what his problemwas that day, but that was the
day I said he had a roughmorning.
It was just dumb.
I don't understand why he'sdoing that, but we're trying
right now to get him tounderstand that dad deserves the
same amount of respect that Ido.
I don't know.
I don't know what it is withhim, but this obsession with his
(11:25):
dad is so bad and so deep andlong running that way, back when
he first started therapy thetherapy I just told you about
recently.
Their primary focus after thefirst 30 days of getting to know
him was to get him lessobsessed with his dad.
That was actually their focus.
They would therapy him for alittle while and say now in 10
(11:46):
minutes, we want dad to walkthrough the room as he's getting
ready for work.
We just want dad to walkthrough the room as he's getting
ready for work, we just wantdad to walk through the kitchen
into the other room.
And the goal is to make Jacobcontinue eye contact with the
therapists and continue thetherapy that he's in the middle
of and get used to his dad beingaround and stop obsessing.
They were working on that andit was really hard.
(12:09):
Things got really rough on thatin regular life around therapy.
It was so hard.
But yeah, this has been goingon for a really long time and it
just it's very, very strangethat he's so obsessed with his
dad and he needs his dad to bekind of like the disciplinarian
and the playmate, but he doesn'trespect his boundaries and he
doesn't respect anything that hesays.
(12:31):
Unless he thinks he's gettinghis dad angry, then it's
different.
But you know, just like upthere in the kitchen, he will
not respect anything.
But I just don't know.
I don't understand it at all.
Before all that therapy startedwe were lucky enough to find
that one non-profit for autismwhen I started bringing him
there.
That's where we learned that hehad trouble with changing of
thresholds and the lady that wasrunning that she's really great
(12:54):
.
She observed him for a whileand she was educating us more
than we had ever been educatedon autism before and she said
that what he's doing right therethat is not autism.
And we were very confusedbecause she said that he's a lot
, he's super autistic.
We hadn't had the evaluationsyet.
We were surprised to learn theseparation between things we I
(13:15):
don't know.
We just felt like this is him.
When we got accepted into thistherapy group, we were very
grateful for her observation andher techniques and her advice
and assessments of our son,because he hadn't been assessed
by any psychologist in a verylong time.
We hadn't gone through theautism scales yet or anything
like that for therapy.
We were not able to do that yetbecause of the waiting list and
(13:39):
this lady taught us so manythings about his autism.
She observed a lot of hisbehaviors that he was having
that were negative and veryunwelcomed, and she told us what
he's doing right now, righthere in this part of life, is
not autism.
We were shocked.
We're like what?
And she says this is behaviorand, more specifically, this is
(14:02):
attention seeking behavior.
And we had not had anyeducation on any of this.
So we were very interested inlearning more and we kept
bringing him in for her therapy.
It was really great to be ableto go there.
So we learned that all thenegative stuff he was doing that
would heighten a response fromone of us or from anyone was not
(14:23):
autism and it was completelyvoluntary and it was
attention-seeking behavior fornegative attention.
And I said well, why?
Why does he want negativeattention?
He always wants love, he lovesto cuddle.
He's just a weird cuddly personLike.
He loves affection and positiveattention.
Why would he want to go andmake us angry and seek negative
(14:46):
attention when he gets all kindsof attention at home?
He gets anything that he wants.
Why does he want to getnegative attention?
He gets all kinds of attentionat home.
He gets anything that he wants.
Why does he want to getnegative attention?
And she said it's the high.
It's like an adrenaline rushfor him, the closer he can get
to the edge of what he perceivesas the cliff of anger with you
guys, the happier he is, andthat's where he wants to live.
(15:06):
He wants to live on the edge ofdisaster, and this is his way
of doing it.
So you have to stop giving itto him, and that's when I just
started educating everyone inour life If he's acting like
this or he's trying to get youmad, don't even look at him.
Don't give it to him.
Don't give him what he wants.
All he wants is for you to getmad.
He wants to think that you'remad and that you're going to
(15:28):
yell at him or do something thatis negative.
He's feeding on that.
Don't give it to him.
That was a huge lesson for us,and it's when we started to
understand that behaviors arenot autism that changed our
approach to a lot of differentthings, which I'm sure will come
out in many of my futureepisodes.
We were eventually invited tothis autism group's swim therapy
(15:51):
, which was really nice.
She kept it close to her vest.
We didn't even know that theydid this, but she had a swim
therapy class that met once aweek at a local hotel.
After seeing him for a while, Idrove 40 minutes a day to give
him a couple hours of hertherapy and attention each day.
She finally invited us to thistherapeutic swim and during swim
(16:15):
she found that most of the kidswith autism that were in this
group were very receptive to hertherapies while they were in
water, which makes a lot ofsense to me because our boy
loves water.
So we were really happy to getthis invitation and I took him.
It's possible that all three ofus went to the first one, but I
took him once a week, everyweek.
(16:37):
The first thing I noticed wasthat I think this is when I
noticed that I had lost myidentity a bit.
I don't carry a purse and Iwould buy clothing to make up
for it.
So I showed up to the swim,just like I showed up everywhere
at that point, wearing cargopants stuffed to the brim with
supplies for Jacob, my hair in ayou know, a low ponytail in the
(16:59):
back, no makeup, not evenwearing my contacts.
I just had my glasses on, whichwere old, and I walked into the
hotel and got him into the swimarea and I saw other parents
that looked exactly like me.
We all look the same.
We all look like zookeepers iswhat my spouse said and I really
(17:19):
felt that when he said thatbecause I came home and I said
you know, all the moms dressjust like me, we're all wearing
khakis, we all look like dirtyand we all just look like shit
and we all look miserable.
Do I look that unhappy?
Because they looked reallyunhappy and they had the same
pants.
Their pockets are stuffed justlike mine.
And he says well, yeah, you alllook like zookeepers and it
(17:41):
makes sense, you kind of are andit was really funny.
But the more I went, the more Istarted to realize that this
isn't me.
What has happened to me.
One of the biggest things wasthat I sat in the far, far back
because he was so obsessed withus at the time that he wouldn't
enjoy anything if he knew wewere there.
(18:02):
So I had to pretend to leaveand I would come back in a
different door and sit way, wayin the back behind a bunch of
plants, or I would just goupstairs and look over the
balcony because I wanted him toget therapy and enjoy himself
and not pay attention to what Iwas doing.
So when I was sitting in the wayway back, I noticed that I
couldn't see anybody's faceswith my glasses on and I noticed
(18:24):
that, no matter how much Icleaned my lenses, all the
lights had halos around them andthey were blurry.
Everything was blurry and I Irealized I'm like, oh my gosh, I
have been so busy taking careof him.
I haven't been to the eyedoctor in like three years.
I can't see.
I started realizing, you know,wow, yeah, I have my own health
(18:47):
issue going on, but, holy crap,this is not me.
I look so miserable and dirtyand I can't even see.
I'm not even taking care of myown health because he's got me
so busy and depressed I can't doany more than I'm doing.
It was a hard thing for me andit took weeks for me to come
full circle on that whole thing,but I realized, wow, this is
(19:10):
hard.
I'm not doing nearly as well asI thought because I can't take
care of me.
So that was a weird thing forme to face.
But all the parents matched,except for one lady.
She was really dressed richlyall the time and I think that I
found out she was the girlfriendof a lawmaker there in that
area or something like that.
So that made sense and I washoping she would I don't know,
(19:33):
help get some things pushedthrough for autism, but I don't
think she was involved at all.
A lot of interesting thingshappened during this swim
therapy and outside of it withthe same organization, but the
thing I wanted to tell you aboutthis week is that when he got
into that group, I think thatwhen he got into that group, I
(19:57):
think he was 14.
I'm pretty sure he was 14.
He could have been 13.
I'm sorry I don't know, but Iknow he wasn't 15, and I will
tell you how later.
But he loved getting in the hottub.
He loves baths, so it madesense to me and this one day, I
don't know, the kids in thegroup were all different ages,
but it was a teen autism group,so I'm pretty sure I think he
was 14.
Anyway, they were all teenagers.
(20:18):
A couple of them were in their20s and there was this one girl
there and I'm pretty sure shewas in her 20s.
I'll tell you about her anothertime, but she was developed and
she was in the hot tub witheveryone and my son was in there
and we got a talking to abouthim being there because they
said that he was looking at herbreasts and touching himself in
(20:42):
his swimming trunks and I was soinsulted by that because my
child is nowhere near sexual.
He's not a sexual being at allAt all.
I know he thinks redheadedgirls are pretty and I can tell
because he loves all theredheaded princesses on Disney.
That's it.
Anytime he sees a redheadedcartoon he really loves them.
(21:06):
He also loved Mary-Kate andAshley.
So I don't know, they're notredheads, but I'm just saying
like that was the extent of itfor him.
And at 14 years old my son wasnot sexualized in any way and I
was insulted that a woman who isan expert on autism pinned that
(21:26):
on my son when he knows nothing.
It's like you take your ownideas and corruption and
whatever exposure that you'vehad in your life and you put it
on my kid and now you havelabeled him with a sexual
misconduct of sorts and hedidn't mean any of it.
And I know that because I well,first of all, I was there and I
(21:51):
saw him over there and he didnothing different than he would
do to anyone else.
It's just that she was sittingdown and he's taller and he was
squatting in the water.
You know how you do it to getin the water, but you're not
sitting yet, and he just hewould go up to everyone and say
hi, hi, hi, hi, hi, hi.
That was all he did back thenand he would jump.
(22:13):
And one of the things that hedid when he jumped was flop his
junk around with his hand.
And it's not sexual at all.
It started at our house.
He had a huge, huge mirror inhis bathroom and he would spend
hours up there entertaininghimself naked in front of the
mirror and I could hear himlaughing all day long and I just
(22:36):
, you know, whatever go ahead,whatever makes you happy.
But I did see what he was doingone time and it was hilarious.
He was cracking himself up.
He would just stand there nakedand it was the big mirror on
the wall, huge.
You could see almost your wholeself in the mirror, but it was
a big wall mirror and then therewas the sink and countertop in
front of it.
So in order to see your wholeself, you had to jump up a
(22:57):
little bit.
So he would jump up a littlebit to see his whole self,
because he's a peacock like that.
He noticed that his junkflopped when he did it and then
he noticed that he could give ita bigger flop if he just
flicked it a little bit with hishand.
That was his bathroom activity.
(23:22):
It wasn't sexual, it wasn'tanything.
He just was playing with hisreflection and laughing.
And I don't blame him, I don'tknow.
I just I get it.
I think that's funny too, youknow.
So he got accused of staring ather chest and jumping up and
down and saying hi, hi, hi andfondling himself at the same
time.
And I was like he doesn't knowboobs, he doesn't know breasts,
(23:43):
he doesn't know sex at all.
We tried to have the talk withhim.
He doesn't get it, he's notthere.
The school tried to make ussign paperwork for him to take
sex ed or whatever, and hedoesn't know anything.
I couldn't put him in sex edbecause he didn't fit, you know
it.
Just it wasn't age appropriate,honestly, because he's not 14
(24:05):
at that time, he's still five,you know it just doesn't, it
didn't fit.
So I never did put him throughsex ed.
He never saw women getsexualized.
He's never shown any kind ofinterest in a woman, whether on
the silver screen or in reallife.
He only is attracted topeople's eyes because if he gets
(24:26):
close enough to your eyes hecan see himself.
He is in love with his ownreflection.
He doesn't care about you oryour tits, he just wants to see
himself everywhere he can.
So I was really insulted and Iwas just shocked that that's
where this lady took it, withouteven knowing him very well at
(24:47):
all.
You just assume that my son issexualizing another person.
He never did Never.
And he has since been accusedof that a couple other times and
it's never been the thing.
One time, when he went back toschool, he was working with an
aide, and I don't know if it'sbefore we pulled him out or
(25:08):
after, but I remember he has tohave a one-on-one aide and it
got to where he needed twoone-on-one aids.
But during school, working withhis aid, put his hand on her
heart, her chest, as they said.
I think they said it was on herbreast.
But he knows where the heart isand if you touch his heart, he
(25:32):
will touch your heart.
And also, if he thinks thatyou're sad or that you can't
breathe or that you're out ofbreath or something like that,
he will touch your heart orhe'll do his best, because he
touches his own heart when hehas too much activity and his
heart is beating rapidly.
He also knows that feelingslive there and if he senses that
(25:54):
you're sad or if he's trying tocommunicate to you that he is
having feelings, he will touchyour heart, not your breasts.
He will touch your upperportion of your chest, where he
believes your heart is.
He doesn't mean anything sexualby this at all.
He's just, I don't know, beingcompassionate.
And everyone seems to thinkthat people with autism have no
(26:17):
compassion, I guess, and that ifthey touch you in an area where
most of us believe is relatedto love, well they must be
molesting you because they don'thave feelings.
And I really resent thatoutlook towards my child Because
, as I said, even now, at 24,I've never seen him ever get
(26:38):
gazunga eyes at any woman ever.
And I mean, when you get past acertain age, your parents start
to wish that you would show alittle bit of interest in
something or someone, eventhough he's obviously he's not
going to have a relationship.
I mean, yeah, I have people say, oh, you never know.
(27:00):
Yes, I pretty much know he'llnever do certain things and I'm
tired of people telling me thatI don't know this.
I know what it takes tofunction in society and he ain't
got it, but you just kind ofwish that you knew whether he
was attracted to people or not.
You know, because it's a, it'spart of the human experience and
there's so much of the humanexperience that he's missing out
on because of his severe autism.
(27:22):
And sometimes you just wonderdoes he think any of those girls
are attractive?
Is he going to have a tell whenhe thinks that someone's pretty
?
Or does he feel attraction?
Is he affected by beauty orwhat he perceives to be
beautiful?
Does any of this register withhim or what's going on in there?
(27:45):
So you do wonder, and asclosely as we have watched him,
we have never, ever seen himchange from a five-year-old to a
horny 18 or 20 year old, never,never.
I have another story about thatfor you another time, but I was
pretty pissed off about that.
In my next episode I've got acouple other misjudgments and
(28:06):
misinformation bits that camefrom this experience at the
nonprofit autism place, but Iwas pretty sad about that.
That that's where it went formy kid.
I don't know what it is withhim shaking his junk all around
without his clothes on, though Imean, I know that he thinks
it's funny, but yesterday he washaving such a bad morning and
(28:28):
he I don't know who he got madat.
It might have been that hisgrandpa was in the house.
He likes to have the house tohimself for a while when he
wakes up and he doesn't get thatall the time, and I think
that's a lot of it.
But he was just having a badtime.
All of a sudden we hear weusually can hear it if he's
slamming his head on the wall,but we didn't hear that.
All we heard was in his bedroom.
So my spouse goes up to hisroom and as he's walking in his
(28:58):
room and trying to get him tosettle down, I hear Jake just do
a huge roar, just like the onethat he did when he dropped to
his knees in the front yard.
After I put him outside, hejust roared this hellacious roar
and his dad's like what thefuck?
And I mean it just came fromnowhere.
(29:19):
I asked Tweedledum whathappened.
He said well, he was over thereand he was hitting his head.
So I yelled at him and I don'tknow, because I usually can hear
him slamming his head on thedoor, jam right there.
And I didn't hear it.
So I don't know.
I think maybe things got blownout of proportion or something.
But after his dad got him tostop screaming and he got him to
get in his bed, we were in theliving room trying to hash
(29:41):
things out and we were only downthere for 30 seconds.
Jacob comes running out of hisroom and I had my back to the
hall and I didn't want to turnaround and give him more
attention.
So I just stood there watchingmy spouse, who was in front of
me, facing Jacob's room, and myspouse looks up and he, with a
straight face, he's like Jacob,if you want to jump and flap in
(30:02):
the hallway, can you at leastput your underwear back on?
I instantly got the image in myhead of what was going on,
because his flapping is veryviolent.
It's not the cute stuff thatyou see where you can play it
off like he's dancing orsomething.
I mean, it is a violent cardioworkout.
So when I tell you that we flapto him, if he flaps in our face
(30:25):
, we flap back.
It is hard.
We have tried it.
It's exhausting and veryviolent.
It's head to toe like you'retwang in a rubber band.
It's just ridiculous and veryviolent.
So I can see that and I knowthat he's got his underwear off
and he's just putting on quite ashow.
I never turned around, but Iwas laughing so hard even
(30:46):
without seeing it, because Ijust knew.
Well, imagine that I am out oftime again.
I am looking forward to makinganother episode next week and I
would love to hear from you ifyou have any similar experiences
or if this episode or any otherepisode has triggered a memory
or a thought or some kind of anidea with you.
I would love to know.
So feel free to send me anemail at
(31:08):
contactparentingsevereautism atgmailcom, or you can send me a
fan mail text message atpsabuzzsproutcom.
You hang in there, you're asuperhero.
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