October 23, 2024 • 20 mins
What happens when a phone conversation turns into an emotional storm? Join us as we navigate the unpredictable waters of raising a child with severe autism, sharing stories of heartache and hope, laughter and lessons. You'll hear about the time our son overheard a phone call that led to an explosive meltdown, revealing the depths of his feelings of exclusion. We also unravel the curious case where a sudden scare surprisingly soothes him, and explore the evolving role of cannabis in managing his behavior. Educator Claire joins us in spirit, as we express our gratitude for her dedication to understanding and supporting children with severe autism, underscoring the vital role of education in shaping compassionate communities.
Our family's journey takes a turn as we recount the transition to rural life, where joys of open spaces met the challenges of unmet needs in local schools. Delight in the memories of outdoor adventures and a cherished pet, while also feeling the sting of loss and adaptation. Whether it's the bittersweet task of explaining the concept of death to a young mind or finding humor in unexpected weightlifting interactions, this episode is a tapestry of emotions. As we promise more engaging stories in future episodes, we invite you to walk alongside us on this heartfelt journey, embracing both the trials and triumphs of parenting a child with severe autism.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (00:18):
Hello, to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
Shannon Chamberlin.
I'm so happy that you're herewith me today.
I want to start peeling theonion, I suppose, on when did
all of this severe autism stuffactually start to turn up as
severe in our lives?
I first want to say thanks toMiss Clair.
(00:39):
She's out there working withkiddos like ours.
She has found my podcast andhas found some of my suggestions
to actually be helpful in theclassroom.
I'm so grateful to Claire fortrying that, in addition to
caring enough about the kiddosthat she works with to listen to
this podcast and get theparents perspective and try the
things that I'm recommending,she's also educating her teenage
(01:02):
daughter about some of thechallenges that we face in
severe autism situations, whichI think is fabulous because, as
you know, many neurotypicalsiblings of our kiddos end up
with long-term PTSD just fromdealing with the lifestyle and
being exposed to the meltdowns,the beatdowns, all of the things
(01:24):
that come with severe autism.
Although Ms Claire's daughteris not a sibling of someone with
severe autism, I think it'safabulous thing that she's
educating her daughter on someof the things that we deal with,
because you never know whenthere is going to be a situation
out there where someone likeone of our kids is in public
(01:45):
being misunderstood, makingpeople feel threatened and
putting themselves in dangerbecause of it, and someone like
Ms Claire's daughter could bearound and say, hey, hey, I
recognize this.
Please stop doing what you'redoing and let this person
breathe, right?
It's so important to educateanyone and everyone we can,
especially the young ones.
I just want to extend sincerethanks to Claire for that.
(02:06):
Thank you so much.
I would love to hear fromanyone else.
Please remember that you canemail me at
contactparentingsevereautism@gmailcom.
You can also text me from mypodcast now, Buzzsprout Should
be a little link on there.
So many different ways to getin touch with me.
I'm not too active on FacebookMessenger because of all this
other stuff I've got going on,but any questions or comments
(02:29):
that you have, please send themmy way and I'll do my best for
you.
I have some pretty cute littlemugs and cups and pillows and
stuff available on my merch pageas well, if you'd like to check
that out.
There is a link at the end ofmy podcast transcript I believe
in every episode and you canfollow all of my links that.
And that a real quick note onthat, speaking of siblings, on
(02:50):
October 3rd when I recorded mylast episode.
Later that day we had a terrible, terrible night and the rest of
the week because apparentlyLittle Miss Eyebrows, the
half-sibling that I've mentionedin my other episodes, arrived
in town later that day.
Our son overheard - well, hedidn't overhear - His
grandfather talks to everyone onhis cell phone, on speakerphone
(03:13):
.
So my son overheard aspeakerphone conversation where
his grandmother's voice wascoming over the phone and he
overheard them making plans butno one came by to see him, no
one asked to talk to him and itbecame a big thing.
It was really terrible.
My spouse and I were out for awalk, we came back in the house
(03:35):
and our son was just violentlyoutbursting for no reason, is
what we thought.
But you know he had a seriousmeltdown and it lasted all night
and continued for several daysafterward.
He a just heard their voices onspeakerphone.
I don't know if he felt leftout or if he was just plain
pissed, but we really think thathe just feels his love is not
(03:57):
being returned.
We heard him saying stuffthrough his angry tears about I
love you, grandma, and stufflike that.
And I don't know, boy, it'sprobably been at least six
months since he's seen her, andall she does is bring a toy over
that he can't play with byhimself and leave it on the
table, not say anything toanyone, and that's it.
So that's his new relationshipwith the woman who was going to
(04:20):
retire and help us take carefull-time him .
So this meltdown was on top ofall the other stuff that we had
been dealing with.
He's been having morningbehaviors all summer and finally
, just about a month ago I think, he went over the top and his
dad was still sleeping and heblew right past me.
(04:41):
I was trying to whisper at himto leave his dad alone, and he
knew what he should have done.
This was already his fourth try.
He just blew right by me andran into the bedroom, put his
face right next to his sleepingdad's ear and started screaming
at him something like Goodmorning, daddy, at the top of
his lungs almost, and my spousewas sleeping soundly.
(05:05):
So he scared him and the firstthing my spouse did was flail
his arms about to turn over andsee what the hell was going on,
and I think that he flailed andaccidentally made contact with
our son somewhere on his body.
But whatever happened, itscared him straight and he's
(05:25):
been good ever since then andevery once in a while it seems
like that's what happens.
He has to get scared during oneof his fits or meltdowns before
he will pull himself togetheror he'll push you to the point
where you have to just scream athim and again, there he is,
living his fantasy of living onthe edge.
(05:45):
He loves that, you know.
I'm now realizing that he's notneeding cannabis until later in
at like afternoon like I don'tknow, like two o'clock,
sometimes four o'clock.
I'm wondering if that's whyhe's been better after dinner
lately.
I mentioned in my last episodethat it's just a nightmare about
10 minutes after dinner and hejust makes us regret everything
(06:06):
that we've ever done in life.
And I told him a couple weeksago he seemed really pissed off
one night that he was having towait until 630 at night to eat
his dinner and I explained tohim the reason I make him wait
so long is because he's not niceto us after he's done eating,
and if he's not going to be niceafter dinner, he's just going
to have to wait to eat later inthe night because I don't want
(06:28):
to put up with him for threehours.
He was really upset when I toldhim that, but since I've told
him that he's actually beenpretty cool after dinner.
I don't know if it's because I'mgiving him his cannabis
medicine later in the day andit's lasting longer, having a
better effect, or if it'sbecause he actually is starting
to understand his actions haveconsequences.
(06:49):
I could hope for that, I don'tknow.
But we did change over fromedible cannabis to drinkable
cannabis medicine and it takeseffect much faster.
It seems to have a bettereffect on him.
He seems happier than he was onthe edible cannabis.
I just think it's working out alot better right now.
So I'm sure it's just a blendof everything that we're doing.
(07:11):
You never really know.
We just had a full supermoon theother day and it was a
nightmare, but the liquidcannabis really helped a lot.
I triple dosed him for the twodays that were really bad.
That's the only way to reallyget around it and this is the
development.
He started getting weird theother day and he got put in his
bed and it was right around thetime that I would normally
(07:31):
administer the medicine to him.
So I went into his room withthe liquid medicine and I showed
it to him and he sat up in bedand he said, ah, like he was so
relieved before he even took it.
He saw what I was doing and hewas so happy.
He was like, oh, thank God, nowI don't have to hurt you.
You know, you don't have topunish me and I don't have to
(07:53):
hurt you.
It was - It was kind of funny.
The relief was just so visibleand so audible.
So when did all of this severeautism stuff actually start to
turn up as severe?
For a long time I thought itwas always the same.
He was a little bit of a bratand catered to and coddled when
I met him and, as you know, hereally got irate when he was not
(08:15):
allowed to shoplift that bigbox of Pop-Tarts from the gas
station on our first excursionout looking for our own home
back in 2008.
And he never seemed to getworse because we removed all of
the poisons toxic foods, drinks,substances and toxic people
from his life when we moved fromthis area up to Rockford.
(08:36):
He didn't seem to get worse, heseemed to get better because he
didn't have all of thosepoisons and it was my feeling
that he was doing well.
Well, looking back, I believethat it was probably around 2012
when things began to godownhill.
Why didn't it happen earlier?
I think it's because of themoving and the constant change
of life.
Although we've always tried totreat him like a person and we
(08:59):
believe that he should betreated like a person by
everyone, I think perhaps wecould have done a better job in
our decisions to move when wemade those decisions to move.
Unfortunately, our lifestylewas such that we never really
lived that securely.
We had a townhouse and so wewere renting and you're always
at the will of the landlord in asituation like that and the
(09:23):
landlord started getting alittle weird and making demands
of us.
My spouse was like all right,look, we're leaving, so find us
a new place and we'll go openour business there.
And it was a very short noticekind of thing, and it was
because of some kind of a weirdrequest and demand from this
landlord who had a crackhead sonwho kept breaking into his
(09:45):
place and just things weregetting weird and we couldn't
remain there anymore and it tooka long time for us to find that
place.
So there was really nowhere forus to go and we just had to
find the next best place wecould and move there.
And we got really lucky withfinding a place that had a
building that we were going touse for our business and
everything went really well.
But we had to move on it and wehad to move fast, and then it
(10:07):
turns out that that one was forsale.
So we never did really unpackour life and it was that house
and that move that, I think,started things going downhill.
I really think that things weresour on the education front
before they were sour on thehome front, but I think we could
(10:28):
have maybe done a little bitbetter.
He may not have absorbed orunderstood what we would have
been trying to say at the time,but perhaps we could have
prepared him for the move, youknow.
So just caution with stuff likethat.
You would think that movingyour business, relocating,
finding a home and all of thatis adult stuff.
(10:49):
And as much as I try to includeour son in the decisions
because it affects him more sothan it would probably a
neurotypical child, sometimes weforget.
We're so absorbed in what we'retrying to do to provide for him
that we don't considerconsulting him.
So I really think that perhapsthings might have been a little
(11:12):
bit easier if we had given hima rundown and he may not have
understood.
But maybe on some level I don'tknow.
You know, it's easy to lookback and say, well, I did this
wrong and I did that wrong.
And the fact is that probably,no matter what we would have
said or done in relation tomoving from one house to another
, everything probably would haveended up the same, because he
does have severe autism and it'sgoing to come out one way or
(11:35):
the other.
I think we got lucky for anumber of years and I think that
perhaps the move maybe kickedit into high gear.
I did notice some littleweirdness things in our
townhouse between the ages of 8and 11, and I just attributed it
to, you know, maybe earlypuberty or something like that.
But I really think that theeducation system in the new
(11:56):
location had a lot to do withbringing certain behaviors to
the surface, but I think theywere going to come anyway, I
guess, is my point.
Things were great when we moved.
We had land, we felt that hewas going to be safer because
there wasn't a busy street goingby the house.
It was a country house.
We had neighbors, but they werecows.
It just seemed a lot safer andhe had a lot of fun there and we
(12:21):
wanted to have a remotelocation for his safety and for
our peace.
We just want to enjoy ourselveswhen we're not working.
So we had all this land.
It was like 12 acres orsomething.
Most of it was a farm fieldthat we had nothing to do with,
but our yard was large and weused to walk on the walking
trails.
He had a fairly new tricyclebig basket.
(12:44):
We would put the dog in thebasket and we would all ride
bikes on the bike trail.
The dog would chase him aroundthe yard and he just loved it.
He would run, the dog wouldchase him, right on his heels
and they just ran and ran andran and ran and he had a great
time.
We never had a bad time thereat the house.
However, this is the school thatbroke the notebook
communications rule that we haveand started just kind of
(13:07):
forcing their way on him and onus, and they didn't seem to have
any respect for the way thingsneed to be done.
And I think he was the only kidwith autism in the school.
There was a Kiwanis group thatwas involved with that school
somehow and they were having aniPad giveaway for a special need
kid with autism and he got itbecause I think he was the only
(13:29):
one.
I really think that thedisrespect he was receiving, not
having his needs met at thatschool, really kicked off a lot
of stuff, because at homeeverything was great.
There were a lot of adjustmentsduring that one year that we
lived there, from 2011 to 2012,I think it was, and I think 2012
is where it really started togo downhill.
(13:49):
So during that time, some ofthe things he had to adjust to
were some of his favorite things, like he outgrew his shoes.
We needed to buy him biggershoes and it just so happened
that his feet grew into a sizethat no longer supported the
Spider-Man look and the Velcroclosure.
If he wanted to get coollooking shoes, then they were
(14:09):
going to tie.
If he wanted to get Velcroshoes, then they were going to
look like grandpa shoes.
There was just no happy mediumthere.
So of course, he wanted coollooking shoes and we had to try
to teach him how to tie hisshoes.
I was either living under arock at the time, or it's true
that the non-tieable shoesalready existed.
I don't quite know why wedidn't have a laceless shoe
(14:32):
option at the time, I don't know.
But we tried to teach him howto tie his shoes and it went on
for a year or more.
He just couldn't do it.
Finally he did it, you know,but it took forever.
He was bummed out and it wassad.
You know, he always hadSpider-Man shoes with Velcro
closures all his life, and thenall of a sudden he gets bigger
(14:53):
and now he's got to wear grandpashoes if he doesn't want to
work hard to close them up.
And it was a hard transitionfor everybody.
That was kind of the start ofthings being weird, he started
showing a lot of in my opinionanxiety because he started
stretching his fingers way, wayback.
I mean, he can stretch hisfingers back till they touch his
arm.
It's really kind of creepy.
(15:13):
And at the time he was doingthat so much and bending them so
far back that his skin aroundhis fingers was cracking and
bleeding and you just couldn'tget him to stop.
And that was the first reallyneurotic, obsessive behavior
that I noticed with him.
And it went on forever.
I thought he was never going tostop doing that, and sometimes
(15:33):
he'll still do it to this day.
But at least he's not crackingand bleeding anymore.
That was just a mess and nomatter what he would not stop.
I think that's when I became theperson that has more rules.
You know, I didn't want himhurting himself and bleeding all
over the place and I couldn'tjust let it go, because I just
(15:54):
don't think it's healthy to letstuff like that go, because then
there's going to be anotherbehavior and another behavior
and pretty soon he's going to bea bloody mess rolling around my
floor and there's nothing I cando about it.
So you kind of have to nip thatin the bud.
You know, if he's doing itabsentmindedly, you have to draw
attention to it, in my opinionand I don't know if that's the
right thing I've never beentaught how to deal with any of
(16:15):
this stuff, but it didn't seemhealthy to me, and it was during
that time with the school andall that stuff.
So I think that maybe that wasan indication that things were
not comfortable for him.
We did everything we could, butwe just couldn't get the school
people to listen to us and torespect him enough to do the
simple, simple things that makehis life happy.
(16:35):
So, luckily, we weren't therevery long.
The house got sold and we hadto move and that's why all of
our stuff was sold, never reallygot unpacked, and once we moved
, things got really strange and,I think, went downhill pretty
quickly.
It was heartbreaking and I'mgoing to start getting into that
stuff in my next episode too.
And speaking of the dog chasinghim around the property that we
(16:59):
were living at, we got our MrDog in 2008 and he was just
everyone's companion.
He was always with us doingeverything.
We had to have Mr Dogeuthanized about, I don't know,
like 18 months ago.
It was terribly sad and Ididn't try to remember the date
because it is so sad for me.
He was my little buddy.
(17:19):
He was supposed to be Jacob'sbuddy.
You know he was.
.
.
Jacob was supposed to take careof him and have this
responsibility of feeding thedog.
I know I've mentioned that andhe never did.
He didn't, he didn't reallyever care, unless the dog was
playing with him or if he wastrying to take the dog's bed.
How does he deal with the deathof a pet?
(17:44):
How did he deal with the deathof his uncle and I don't really
have answers because I'm not inhis head and he doesn't really
speak well, but the dog passedabout 18 months ago and about
three days ago Jacob was downhere just sitting with us and
out of the blue, he said where'sdog?
And I didn't know what to say.
I was shocked, I didn't knowwhat to say and I had to ask him
(18:06):
several questions to make surethat that's what I heard him say
.
Is he actually asking me whereis the dog?
He named the dog Doggy.
I was confused and I have apicture of the dog on my phone
and I said this Are you.
.
.
this?
Both of us, me and his dad,were just like, like are you
asking about Mr Dog, really?
(18:27):
So yes, it turns out he wasasking where is the dog and
that's the first time that hehas given me any inkling that he
notices that Mr Dog is not here.
We did try to address it withhim but he kind of just glazed
over and it didn't really seemto affect him one way or the
other.
So here you go, folks.
18 months or so later he comesup with a question about where
(18:49):
is the dog.
I thought that was very strangeand his dad explained that the
dog is in heaven with his Uncle,Todd todd, and it was just
really really strange to me.
So I wanted to include thatbecause there is an answer about
how does he deal with the lossof a pet or a loved one.
That's all I've got on that,and one cute little thing that I
think is just hilarious latelyI've been doing a lot of
(19:12):
weightlifting over the pastcouple years.
My arms are actually startingto get a little bit muscly and
he seems to have noticed, evenif I'm not wearing a tank top.
I think that I don't know, Idon't know what it is that makes
him notice that my arms arethicker and muscly now.
But he is constantly making aspecial trip over to me and
he'll .
.
.
say the best that he can, he'llHe'll say squeeze arm, squeeze
(19:34):
arm.
And then he'll put his littlefingers around my arm and he'll
just squeeze and release realfast like almost like a blood
pressure wrap thing, and he'llgo vang bang, vang bang, vang
bang, vang bang, vang bang, vangbang, vang bang, vang bang, vang
bang, vang bang, vang bang vangbang.
I don't know what that means,but it's so cute.
I am, am again, again his newtoy because I've got some
(19:55):
muscles.
So if you're looking to relievestress and you don't want to
drink and you don't want tosmoke pot and you really need an
outlet.
Try to pick up some dumbbells,build yourself some muscles and
then you'll also be entertainingto your kid after you get some
muscles ,right?
Well, again, I have run out oftime.
I will be back next week withmore stories.
We're going to get into somereal deep stuff coming up.
(20:15):
It's heavy to me and hopefullyit helps some of you out there.
You hang in there.
You're a superhero.
Hello, to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
Shannon Chamberlin.
I'm so happy that you're herewith me today.
I want to start peeling theonion, I suppose, on when did
all of this severe autism stuffactually start to turn up as
severe in our lives?
I first want to say thanks toMiss Clair.
(00:39):
She's out there working withkiddos like ours.
She has found my podcast andhas found some of my suggestions
to actually be helpful in theclassroom.
I'm so grateful to Claire fortrying that, in addition to
caring enough about the kiddosthat she works with to listen to
this podcast and get theparents perspective and try the
things that I'm recommending,she's also educating her teenage
(01:02):
daughter about some of thechallenges that we face in
severe autism situations, whichI think is fabulous because, as
you know, many neurotypicalsiblings of our kiddos end up
with long-term PTSD just fromdealing with the lifestyle and
being exposed to the meltdowns,the beatdowns, all of the things
(01:24):
that come with severe autism.
Although Ms Claire's daughteris not a sibling of someone with
severe autism, I think it'safabulous thing that she's
educating her daughter on someof the things that we deal with,
because you never know whenthere is going to be a situation
out there where someone likeone of our kids is in public
(01:45):
being misunderstood, makingpeople feel threatened and
putting themselves in dangerbecause of it, and someone like
Ms Claire's daughter could bearound and say, hey, hey, I
recognize this.
Please stop doing what you'redoing and let this person
breathe, right?
It's so important to educateanyone and everyone we can,
especially the young ones.
I just want to extend sincerethanks to Claire for that.
(02:06):
Thank you so much.
I would love to hear fromanyone else.
Please remember that you canemail me at
contactparentingsevereautism@gmailcom.
You can also text me from mypodcast now, Buzzsprout Should
be a little link on there.
So many different ways to getin touch with me.
I'm not too active on FacebookMessenger because of all this
other stuff I've got going on,but any questions or comments
(02:29):
that you have, please send themmy way and I'll do my best for
you.
I have some pretty cute littlemugs and cups and pillows and
stuff available on my merch pageas well, if you'd like to check
that out.
There is a link at the end ofmy podcast transcript I believe
in every episode and you canfollow all of my links that.
And that a real quick note onthat, speaking of siblings, on
(02:50):
October 3rd when I recorded mylast episode.
Later that day we had a terrible, terrible night and the rest of
the week because apparentlyLittle Miss Eyebrows, the
half-sibling that I've mentionedin my other episodes, arrived
in town later that day.
Our son overheard - well, hedidn't overhear - His
grandfather talks to everyone onhis cell phone, on speakerphone
(03:13):
.
So my son overheard aspeakerphone conversation where
his grandmother's voice wascoming over the phone and he
overheard them making plans butno one came by to see him, no
one asked to talk to him and itbecame a big thing.
It was really terrible.
My spouse and I were out for awalk, we came back in the house
(03:35):
and our son was just violentlyoutbursting for no reason, is
what we thought.
But you know he had a seriousmeltdown and it lasted all night
and continued for several daysafterward.
He a just heard their voices onspeakerphone.
I don't know if he felt leftout or if he was just plain
pissed, but we really think thathe just feels his love is not
(03:57):
being returned.
We heard him saying stuffthrough his angry tears about I
love you, grandma, and stufflike that.
And I don't know, boy, it'sprobably been at least six
months since he's seen her, andall she does is bring a toy over
that he can't play with byhimself and leave it on the
table, not say anything toanyone, and that's it.
So that's his new relationshipwith the woman who was going to
(04:20):
retire and help us take carefull-time him .
So this meltdown was on top ofall the other stuff that we had
been dealing with.
He's been having morningbehaviors all summer and finally
, just about a month ago I think, he went over the top and his
dad was still sleeping and heblew right past me.
(04:41):
I was trying to whisper at himto leave his dad alone, and he
knew what he should have done.
This was already his fourth try.
He just blew right by me andran into the bedroom, put his
face right next to his sleepingdad's ear and started screaming
at him something like Goodmorning, daddy, at the top of
his lungs almost, and my spousewas sleeping soundly.
(05:05):
So he scared him and the firstthing my spouse did was flail
his arms about to turn over andsee what the hell was going on,
and I think that he flailed andaccidentally made contact with
our son somewhere on his body.
But whatever happened, itscared him straight and he's
(05:25):
been good ever since then andevery once in a while it seems
like that's what happens.
He has to get scared during oneof his fits or meltdowns before
he will pull himself togetheror he'll push you to the point
where you have to just scream athim and again, there he is,
living his fantasy of living onthe edge.
(05:45):
He loves that, you know.
I'm now realizing that he's notneeding cannabis until later in
at like afternoon like I don'tknow, like two o'clock,
sometimes four o'clock.
I'm wondering if that's whyhe's been better after dinner
lately.
I mentioned in my last episodethat it's just a nightmare about
10 minutes after dinner and hejust makes us regret everything
(06:06):
that we've ever done in life.
And I told him a couple weeksago he seemed really pissed off
one night that he was having towait until 630 at night to eat
his dinner and I explained tohim the reason I make him wait
so long is because he's not niceto us after he's done eating,
and if he's not going to be niceafter dinner, he's just going
to have to wait to eat later inthe night because I don't want
(06:28):
to put up with him for threehours.
He was really upset when I toldhim that, but since I've told
him that he's actually beenpretty cool after dinner.
I don't know if it's because I'mgiving him his cannabis
medicine later in the day andit's lasting longer, having a
better effect, or if it'sbecause he actually is starting
to understand his actions haveconsequences.
(06:49):
I could hope for that, I don'tknow.
But we did change over fromedible cannabis to drinkable
cannabis medicine and it takeseffect much faster.
It seems to have a bettereffect on him.
He seems happier than he was onthe edible cannabis.
I just think it's working out alot better right now.
So I'm sure it's just a blendof everything that we're doing.
(07:11):
You never really know.
We just had a full supermoon theother day and it was a
nightmare, but the liquidcannabis really helped a lot.
I triple dosed him for the twodays that were really bad.
That's the only way to reallyget around it and this is the
development.
He started getting weird theother day and he got put in his
bed and it was right around thetime that I would normally
(07:31):
administer the medicine to him.
So I went into his room withthe liquid medicine and I showed
it to him and he sat up in bedand he said, ah, like he was so
relieved before he even took it.
He saw what I was doing and hewas so happy.
He was like, oh, thank God, nowI don't have to hurt you.
You know, you don't have topunish me and I don't have to
(07:53):
hurt you.
It was - It was kind of funny.
The relief was just so visibleand so audible.
So when did all of this severeautism stuff actually start to
turn up as severe?
For a long time I thought itwas always the same.
He was a little bit of a bratand catered to and coddled when
I met him and, as you know, hereally got irate when he was not
(08:15):
allowed to shoplift that bigbox of Pop-Tarts from the gas
station on our first excursionout looking for our own home
back in 2008.
And he never seemed to getworse because we removed all of
the poisons toxic foods, drinks,substances and toxic people
from his life when we moved fromthis area up to Rockford.
(08:36):
He didn't seem to get worse, heseemed to get better because he
didn't have all of thosepoisons and it was my feeling
that he was doing well.
Well, looking back, I believethat it was probably around 2012
when things began to godownhill.
Why didn't it happen earlier?
I think it's because of themoving and the constant change
of life.
Although we've always tried totreat him like a person and we
(08:59):
believe that he should betreated like a person by
everyone, I think perhaps wecould have done a better job in
our decisions to move when wemade those decisions to move.
Unfortunately, our lifestylewas such that we never really
lived that securely.
We had a townhouse and so wewere renting and you're always
at the will of the landlord in asituation like that and the
(09:23):
landlord started getting alittle weird and making demands
of us.
My spouse was like all right,look, we're leaving, so find us
a new place and we'll go openour business there.
And it was a very short noticekind of thing, and it was
because of some kind of a weirdrequest and demand from this
landlord who had a crackhead sonwho kept breaking into his
(09:45):
place and just things weregetting weird and we couldn't
remain there anymore and it tooka long time for us to find that
place.
So there was really nowhere forus to go and we just had to
find the next best place wecould and move there.
And we got really lucky withfinding a place that had a
building that we were going touse for our business and
everything went really well.
But we had to move on it and wehad to move fast, and then it
(10:07):
turns out that that one was forsale.
So we never did really unpackour life and it was that house
and that move that, I think,started things going downhill.
I really think that things weresour on the education front
before they were sour on thehome front, but I think we could
(10:28):
have maybe done a little bitbetter.
He may not have absorbed orunderstood what we would have
been trying to say at the time,but perhaps we could have
prepared him for the move, youknow.
So just caution with stuff likethat.
You would think that movingyour business, relocating,
finding a home and all of thatis adult stuff.
(10:49):
And as much as I try to includeour son in the decisions
because it affects him more sothan it would probably a
neurotypical child, sometimes weforget.
We're so absorbed in what we'retrying to do to provide for him
that we don't considerconsulting him.
So I really think that perhapsthings might have been a little
(11:12):
bit easier if we had given hima rundown and he may not have
understood.
But maybe on some level I don'tknow.
You know, it's easy to lookback and say, well, I did this
wrong and I did that wrong.
And the fact is that probably,no matter what we would have
said or done in relation tomoving from one house to another
, everything probably would haveended up the same, because he
does have severe autism and it'sgoing to come out one way or
(11:35):
the other.
I think we got lucky for anumber of years and I think that
perhaps the move maybe kickedit into high gear.
I did notice some littleweirdness things in our
townhouse between the ages of 8and 11, and I just attributed it
to, you know, maybe earlypuberty or something like that.
But I really think that theeducation system in the new
(11:56):
location had a lot to do withbringing certain behaviors to
the surface, but I think theywere going to come anyway, I
guess, is my point.
Things were great when we moved.
We had land, we felt that hewas going to be safer because
there wasn't a busy street goingby the house.
It was a country house.
We had neighbors, but they werecows.
It just seemed a lot safer andhe had a lot of fun there and we
(12:21):
wanted to have a remotelocation for his safety and for
our peace.
We just want to enjoy ourselveswhen we're not working.
So we had all this land.
It was like 12 acres orsomething.
Most of it was a farm fieldthat we had nothing to do with,
but our yard was large and weused to walk on the walking
trails.
He had a fairly new tricyclebig basket.
(12:44):
We would put the dog in thebasket and we would all ride
bikes on the bike trail.
The dog would chase him aroundthe yard and he just loved it.
He would run, the dog wouldchase him, right on his heels
and they just ran and ran andran and ran and he had a great
time.
We never had a bad time thereat the house.
However, this is the school thatbroke the notebook
communications rule that we haveand started just kind of
(13:07):
forcing their way on him and onus, and they didn't seem to have
any respect for the way thingsneed to be done.
And I think he was the only kidwith autism in the school.
There was a Kiwanis group thatwas involved with that school
somehow and they were having aniPad giveaway for a special need
kid with autism and he got itbecause I think he was the only
(13:29):
one.
I really think that thedisrespect he was receiving, not
having his needs met at thatschool, really kicked off a lot
of stuff, because at homeeverything was great.
There were a lot of adjustmentsduring that one year that we
lived there, from 2011 to 2012,I think it was, and I think 2012
is where it really started togo downhill.
(13:49):
So during that time, some ofthe things he had to adjust to
were some of his favorite things, like he outgrew his shoes.
We needed to buy him biggershoes and it just so happened
that his feet grew into a sizethat no longer supported the
Spider-Man look and the Velcroclosure.
If he wanted to get coollooking shoes, then they were
(14:09):
going to tie.
If he wanted to get Velcroshoes, then they were going to
look like grandpa shoes.
There was just no happy mediumthere.
So of course, he wanted coollooking shoes and we had to try
to teach him how to tie hisshoes.
I was either living under arock at the time, or it's true
that the non-tieable shoesalready existed.
I don't quite know why wedidn't have a laceless shoe
(14:32):
option at the time, I don't know.
But we tried to teach him howto tie his shoes and it went on
for a year or more.
He just couldn't do it.
Finally he did it, you know,but it took forever.
He was bummed out and it wassad.
You know, he always hadSpider-Man shoes with Velcro
closures all his life, and thenall of a sudden he gets bigger
(14:53):
and now he's got to wear grandpashoes if he doesn't want to
work hard to close them up.
And it was a hard transitionfor everybody.
That was kind of the start ofthings being weird, he started
showing a lot of in my opinionanxiety because he started
stretching his fingers way, wayback.
I mean, he can stretch hisfingers back till they touch his
arm.
It's really kind of creepy.
(15:13):
And at the time he was doingthat so much and bending them so
far back that his skin aroundhis fingers was cracking and
bleeding and you just couldn'tget him to stop.
And that was the first reallyneurotic, obsessive behavior
that I noticed with him.
And it went on forever.
I thought he was never going tostop doing that, and sometimes
(15:33):
he'll still do it to this day.
But at least he's not crackingand bleeding anymore.
That was just a mess and nomatter what he would not stop.
I think that's when I became theperson that has more rules.
You know, I didn't want himhurting himself and bleeding all
over the place and I couldn'tjust let it go, because I just
(15:54):
don't think it's healthy to letstuff like that go, because then
there's going to be anotherbehavior and another behavior
and pretty soon he's going to bea bloody mess rolling around my
floor and there's nothing I cando about it.
So you kind of have to nip thatin the bud.
You know, if he's doing itabsentmindedly, you have to draw
attention to it, in my opinionand I don't know if that's the
right thing I've never beentaught how to deal with any of
(16:15):
this stuff, but it didn't seemhealthy to me, and it was during
that time with the school andall that stuff.
So I think that maybe that wasan indication that things were
not comfortable for him.
We did everything we could, butwe just couldn't get the school
people to listen to us and torespect him enough to do the
simple, simple things that makehis life happy.
(16:35):
So, luckily, we weren't therevery long.
The house got sold and we hadto move and that's why all of
our stuff was sold, never reallygot unpacked, and once we moved
, things got really strange and,I think, went downhill pretty
quickly.
It was heartbreaking and I'mgoing to start getting into that
stuff in my next episode too.
And speaking of the dog chasinghim around the property that we
(16:59):
were living at, we got our MrDog in 2008 and he was just
everyone's companion.
He was always with us doingeverything.
We had to have Mr Dogeuthanized about, I don't know,
like 18 months ago.
It was terribly sad and Ididn't try to remember the date
because it is so sad for me.
He was my little buddy.
(17:19):
He was supposed to be Jacob'sbuddy.
You know he was.
.
.
Jacob was supposed to take careof him and have this
responsibility of feeding thedog.
I know I've mentioned that andhe never did.
He didn't, he didn't reallyever care, unless the dog was
playing with him or if he wastrying to take the dog's bed.
How does he deal with the deathof a pet?
(17:44):
How did he deal with the deathof his uncle and I don't really
have answers because I'm not inhis head and he doesn't really
speak well, but the dog passedabout 18 months ago and about
three days ago Jacob was downhere just sitting with us and
out of the blue, he said where'sdog?
And I didn't know what to say.
I was shocked, I didn't knowwhat to say and I had to ask him
(18:06):
several questions to make surethat that's what I heard him say
.
Is he actually asking me whereis the dog?
He named the dog Doggy.
I was confused and I have apicture of the dog on my phone
and I said this Are you.
.
.
this?
Both of us, me and his dad,were just like, like are you
asking about Mr Dog, really?
(18:27):
So yes, it turns out he wasasking where is the dog and
that's the first time that hehas given me any inkling that he
notices that Mr Dog is not here.
We did try to address it withhim but he kind of just glazed
over and it didn't really seemto affect him one way or the
other.
So here you go, folks.
18 months or so later he comesup with a question about where
(18:49):
is the dog.
I thought that was very strangeand his dad explained that the
dog is in heaven with his Uncle,Todd todd, and it was just
really really strange to me.
So I wanted to include thatbecause there is an answer about
how does he deal with the lossof a pet or a loved one.
That's all I've got on that,and one cute little thing that I
think is just hilarious latelyI've been doing a lot of
(19:12):
weightlifting over the pastcouple years.
My arms are actually startingto get a little bit muscly and
he seems to have noticed, evenif I'm not wearing a tank top.
I think that I don't know, Idon't know what it is that makes
him notice that my arms arethicker and muscly now.
But he is constantly making aspecial trip over to me and
he'll .
.
.
say the best that he can, he'llHe'll say squeeze arm, squeeze
(19:34):
arm.
And then he'll put his littlefingers around my arm and he'll
just squeeze and release realfast like almost like a blood
pressure wrap thing, and he'llgo vang bang, vang bang, vang
bang, vang bang, vang bang, vangbang, vang bang, vang bang, vang
bang, vang bang, vang bang vangbang.
I don't know what that means,but it's so cute.
I am, am again, again his newtoy because I've got some
(19:55):
muscles.
So if you're looking to relievestress and you don't want to
drink and you don't want tosmoke pot and you really need an
outlet.
Try to pick up some dumbbells,build yourself some muscles and
then you'll also be entertainingto your kid after you get some
muscles ,right?
Well, again, I have run out oftime.
I will be back next week withmore stories.
We're going to get into somereal deep stuff coming up.
(20:15):
It's heavy to me and hopefullyit helps some of you out there.
You hang in there.
You're a superhero.
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