April 23, 2025 • 34 mins
Imagine waking up one morning to discover your child has lost every skill they've ever learned. This devastating experience is the reality for many parents of teens with severe autism, yet it's rarely discussed in autism resources or by medical professionals.
In this deeply personal episode, I share the heartbreaking story of my son losing all his functional abilities and speech within days of turning 15. What began with concerning behaviors—strange vocalizations, withdrawing to his room, repetitive actions—culminated in a complete regression that left him unable to perform even the simplest tasks he once mastered. His 100-word vocabulary vanished almost overnight, replaced only with the phrase "I love you," which he began saying indiscriminately to strangers.
The most shocking part? After frantic research, I discovered this regression at age 15 is apparently a documented phenomenon in some children with severe autism—yet in all our years working with specialists and researching autism, not one professional had ever warned us this might happen. How could something so significant not be part of standard information given to parents of children with severe autism?
Throughout the episode, I detail our attempts to help our son: cross-body exercises recommended by specialists, creating sensory-rich environments, increased therapy sessions, and constant engagement. I share both the frustrations and the rare moments of breakthrough, including a recent heartwarming moment when he perfectly mimicked a Tony the Tiger commercial from the depths of his memory.
For parents with children under 15 with severe autism, this episode serves as both a warning and a call to maximize interventions while your child's brain remains receptive. For those who've already experienced this regression, you'll find validation and the comfort of knowing you're not alone on this journey. Sometimes being a parent to a child with severe autism means celebrating the smallest victories while navigating the most challenging losses.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:18):
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
I just want to jump right intothis.
I know I've been absent for aweek more than I expected to be
and I was planning on justgiving you updates and little
solutions that we came up withto the things that we were
dealing with that I mentioned inthe last episode.
(00:38):
So we were talking about himoverflowing the sink and the
toilet and doing those weirdcrazy voices that scared us and
all kinds of stuff like that.
They all started happening, Ithink, between the ages of 14
and 15.
So I'm just trying to coverthese things because there's
something really big at the endwhich I told you I was going to
(00:59):
share in my last episode and Ididn't get to it.
So let's just get into this.
I remember trying to teach ourson to cook eggs and obviously
he was going to be fullysupervised, but he had some.
I mean, he was demonstratingthat he could do things a little
bit and I was just trying tosee if I could get him to do
anything.
He didn't really want to haveanything to do with cooking eggs
(01:21):
.
He loves hanging out with me inthe kitchen, but he would just
whine and whine and whine everytime.
So I did give up on that veryquickly and you know, we had
taken him out to go camping totry to detox him from
electronics because he wasacting like he was in a cartoon
or something and it reallyfreaked us out.
Well, that happened again and Imade a connection and my spouse
(01:44):
doesn't think so, but I dothink so.
So there's that.
But my spouse had taken upclassical guitar and he was
playing it a lot.
Once he gets locked ontosomething, he just goes for it
and he was playing this guitar alot.
He would wake up really earlyin the morning and go down and
light a fire and play guitar allby himself and just have some
(02:07):
alone time and then he wouldplay for a few more hours and I
mean it was a lot.
You know, he would playwhenever he had a free minute
and he was actually quittingsmoking at the time.
So I was happy about, you know,whatever he needed to do with
that.
And one day our son was tryingto babble at him and I was just
sitting there listening to himplay guitar and our son came in
(02:30):
and just kept trying to babbleat him and babble at him, and
babble at him, and he had beendoing this to us frequently, to
the point where we had to leavethe room.
So it wasn't something like wemissed out on some profound
communication, it was just ourson's way of getting in our face
and creating some sort oftension in the room, which we
(02:50):
learned from the lady at thatnon-profit.
And he just, you know he wasn'tgoing to do or say anything, he
was just trying to, you know,have attention, and I mean a lot
of kids do that anyway whenthey're like five.
That's what he was doing and myspouse didn't answer him fast
enough.
So our son got this reallyweird pitch in his voice and
(03:10):
started talking like that, andhere's what happened he said dad
, dad, dad, dad, and then hekept looking at the guitar
because his dad was playing theguitar, and then he goes dad,
and that made both of us stopand just stare at each other and
then at him.
Well, that got his attention,because that's how he got our
attention.
(03:30):
So he quickly locked onto thatand realized, in my opinion,
that that's the way now to getattention.
You know, they're tired of me.
They're not answering meanymore.
Now I know what to do.
This is the voice.
So then he started talking, likeyeah, and it was really scary.
Mind you, he only had about ahundred words in his vocabulary,
(03:51):
but he did have words at thattime and it scared the hell out
of my spouse for sure.
And I said babe, I think he'strying to match the tone of your
guitar.
I think that he's trying tocompete with your guitar.
I think that he thinks thathe's being neglected for the
guitar, if you know what I mean.
Like I think that he's tryingto compete with your guitar.
I think that he thinks thathe's being neglected for the
guitar, if you know what I mean.
Like I think that he is tryingto compete and he wants to be
(04:11):
the toy.
He doesn't want you to playwith the guitar, he wants you to
play with him, and I reallythink that he did that to show
you that he's as interesting asthe guitar.
You know what I mean.
That's how I saw it.
But my spouse was like no,that's just silly.
No, I don't think so, I justthink he's being scary, you know
.
But of course, if you have anew hobby, you don't want to
(04:33):
think that it's going to getruined because your kid is
reacting negatively to it andnow you won't be able to do it
anymore and that's your onething that you get to do, you
know.
So I understand both sides ofthat, but I really do think that
that's what was going on.
But we couldn't get him to stop.
We ended up taking him back outto the woods and camping again,
and he had to get used to theguitar.
(04:55):
You know, he brought the guitarthis time and was playing it at
the campsite and everything,and we had to just explain to
him that this is daddy's time.
We are going to be quiet duringdaddy's time.
You can wait your turn, andthat's when we started learning
about whose turn it is.
So it's the guitar's turn, andthen it's Jacob's turn and then
(05:16):
it's daddy's turn, you know.
So you get to hold the talkingstick, so to speak.
So we started working on thatand just trying to teach him
that you know you can't just getthe attention of whoever you
want, anytime you want.
There are things happening,people are doing things.
You know you have to wait yourturn.
And then the next thing Iremember is that he would not
(05:36):
leave his room.
This kind of goes along with,you know, when he started hating
everything and all of thatstuff.
But it was really, I mean, onone hand it was kind of nice
having him out of my hair and onthe other hand it was kind of
scary because that was just wayout of character for him.
He was always in my hair and Ididn't know what to do.
He just wouldn't leave his roomand he was just kind of
shuffling and humming and it wasgetting kind of scary.
(05:59):
So all of these things happenedwithin close proximity of each
other.
And these things happened withinclose proximity of each other
and, look, I didn't knowanything back then.
I mean, I don't know.
I did research all the time butI didn't learn what I could
have learned if I would havebeen in contact with other moms
and dads.
I didn't start learning aboutsome things that could have been
wrong with him until I actuallyhad to leave Wisconsin, come to
(06:21):
Illinois and get into theworkplace and I started meeting
parents of kids with severeautism and I started learning
that, oh my gosh, you knowthere's this and that.
And of course there's aFacebook group or two that I'm
in and that's where I learnedall my information.
I cannot find the informationonline.
Well, maybe now you can, butback then you couldn't.
So this was like 10 years ago.
(06:42):
I just I didn't know.
But I want to say now, if yourkid is humming and shuffling in
one spot or just not responding,or just the look in the eye is
different, like our kid, helikes a little bit of eye
contact, but not all the time.
But I know a lot of these kidsdon't like eye contact, but you
can still see their eyes and ifthey end up looking different,
(07:03):
or you know, if your kid startsgetting a little bit weird or
withdrawn, or just I don't know,ghosty, you might look into
this Catatonia thing.
There's a couple differentclassifications of Catatonia,
but you know, the more I learnabout that, the more I wonder if
he was having an episode andmaybe we got lucky and he
(07:23):
slipped out of it.
But I mean it was reallysimilar.
A lot of the stuff he wentthrough was really similar to
this autistic catatonia orwhatever.
And I mean I had been bringinghim to the doctor all the time,
or the nurse practitioner,whoever I could.
I was always like what's wrongwith him, something's going on,
depending what it was.
I mean just so many things.
We were always and nobodycaught anything.
(07:44):
The only thing that the medicalprofessionals ever did was wait
for me to say hey, you knowwhat his symptoms match this
that I'm finding right now, suchas with the toe and the.
You know, when he kicked hisbed and all that, and we ended
up getting him diagnosed withRaynaud's disease.
He didn't have Raynaud'sdisease, he had kick the bed
frame disease.
But these doctors are just like, oh yeah, yeah, let's do, let's
(08:07):
go with that, you know, and sothat was no help.
But I just, you know, I feelthat the medical profession has
failed us numerous times.
I think that he's got lots ofother things going on that have
not been diagnosed, which I'llget into another time.
But I just wanted to tell youabout this catatonia thing
because, man, I think that wewere close to some kind of
(08:29):
disaster with that and nobodycaught it.
But the lady at the nonprofit,when I explained it to her, she
said, well, that's his bubble,that's his autism bubble and he
will stay there forever if youlet him.
You have to bring him out ofthat autism bubble.
You have to do whatever you cando to make him get out of that
comfort zone.
That's the comfort zone hewants to be in.
(08:50):
I don't have to think, I don'thave to try, I don't have to
function, I don't have to doanything but stand here and be
autistic, and that's where Iwant to be.
This is comfortable for me.
I don't want to try.
That's how she explained it.
So I was like, oh my gosh, youknow.
So we started learning that youknow, do patty cake, patty cake
(09:10):
with the cross your arm, youknow, arms across the body and
start making him slap your hands, cross body slaps and just all
kinds of just cross body stuffwhere your right arm crosses
your left side of your body, etc.
With your hands and your feet.
I mean his hands and his feet.
You know, that was one thingand he seems to really enjoy
that.
And I did start, you know,taking him to that CP center and
(09:33):
she sent us home with a bigtherapy ball and exercises that
we had to do with him and wewere also instructed for dad to
start wrestling with him to.
I don't know, it's some kind ofphysical therapy, you know,
just let him squeeze you and lethim.
I don't know, he needed somekind of testosterone outlet, I
guess is what it was.
(09:54):
And we have had experiences inthe past where he wants to play
with dad and they had like acouple Nerf swords and
lightsabers and stuff like thatand Jacob would get really crazy
with it.
He would beat his dad so badlywith these swords and
lightsabers and his dad wouldjust be laughing and you know
it's all in good fun and he wasreally.
(10:15):
You know he's strong and he'sbig and Jacob was small and not
strong and so it didn't botherhim.
But Jacob would go from reallyjust wailing on him with this
sword or lightsaber to having afull-on meltdown, crying and
screaming and inconsolable.
So we weren't really too keenon this whole wrestle with dad
thing but they did a coupletimes.
(10:36):
But I mean, who has room?
He was already like you know,5'7", 5'8" and daddy's over six
foot, so who has room for that?
But they did a little bit hereand there.
But we just usually docompression, hugs and stuff or
squeezes all up and down thearms and legs and we do get him
massages now.
But those were some of thesuggestions to help him with his
(10:59):
weirdness that he wasdeveloping and both the weird
voice and the shuffling, humming, seclusion behavior.
And right around that same timethere was another thing that had
happened when he was not afraidof the four-wheeler.
We were all outside one day andTweedledum was there.
And Tweedledum is standing outthere and says Jacob, you know,
(11:20):
he's running around a little bitrestless.
And Tweedledum says hey, jacob,you want to go for a ride on
the four-wheeler with Papaw?
And Jacob says yes, I was likeokay, well, that was unexpected,
you know, and me and my spouseare just kind of looking at each
other like, wow, okay, neat.
Two minutes later Jacob is likegetting restless again, like
waiting for the cue to get onthe four-wheeler and take a ride
(11:41):
.
I look over at Tweedledum.
I'm like he's ready, andTweedledum goes oh, I'm tired, I
changed my mind, I don't wantto go.
And like you can't do that tohim.
Maybe you can do that to otherkids, but you can't do that to
Jake.
What is the problem?
You can't just offer himentertainment and then say, no,
I don't feel like it within twominutes.
(12:02):
What is wrong with you?
So that really sucked.
But eventually Jacob did startriding the four-wheeler again
and his grandpa was not aroundwhen he was doing it.
We would all go down to thefishing dock that we had there
and we would let Jacob ride thetrail behind us.
Right there, we were sittingthere and Jacob's riding up and
(12:23):
down the trail but then he ridesto the left of us and we hear
the four-wheeler stop.
So we're instantly like, oh no,what happened?
There's nothing but woods, butwho knows?
You know, we got to go, so it'sjust just out of our view off
the trail, and we go down thereand it's a play place that we
had set up.
That's where he was stopped.
We went down to figure out what.
Did he get stuck?
Did he have an accident?
(12:44):
What in the world's going on?
And he's standing on the groundwith the four-wheeler running
and he's yanking on it on theluggage bar or whatever.
And he's just yanking on it andthen he's picking it up and
trying to, you know, turn theback end of it a little bit to
the right, and then he's yankingon it some more and then
picking it up.
I'm like, what are you doing?
We learned that every time notevery time, but most times, I
(13:08):
guess when he would ride thefour-wheeler as a passenger with
his grandfather, hisgrandfather would somehow get
over there and not be able tomake the turn and he would pull
up and then get off and thenyank on the bar and pick it up
and wrestle the ass end of thequad around until he could turn
(13:28):
the stupid thing and get back onthe trail.
And this is the habit thatJacob learned from.
So he thought.
I think he thought that hecould.
He's just supposed to ride downto this little pine tree area,
pull in in this little stupidposition, get off and then try
to wrestle the thing out, whenour son is very good at steering
(13:49):
this thing and there'sabsolutely no reason for him to
do that.
I guess be careful what kind ofhabits your kids are seeing,
because they'll think that'sjust the way to do it.
You know, glad that we foundthat out and broke him of that.
We were like no, that's just,that's just silly.
You know who does that.
Where'd him of that?
We were like no, that's justsilly, you know who does that,
where'd you get that?
And he says Peppa, and okay,well, we don't have to do that,
(14:10):
you can just ride it and turnaround the way you always do.
He's like okay, but I wonder ifit was some kind of experience
with his grandpa on thatfour-wheeler.
That made him stop wanting toride the four-wheeler.
He loved that more thananything and it really was
shocking and sad when he stoppedwanting to ride it and I'm glad
he got back into it.
But I wonder, you never know,because he's never, ever going
(14:32):
to tell you.
Even in his chatter there wasno way.
I never heard anything aboutthat.
So another thing that happenedand I may have told this story.
It's short and sweet but it'shilarious to me.
So I'm going to say it againbecause it was all within this
time frame.
It was, I think I want to sayit was fall, I don't know.
Tweedledum was there and he wassitting on a cooler in our
living room next to thefireplace.
(14:54):
Jacob came up to him.
He stood next to hisgrandfather and put his arm
around his shoulders, stoodthere for a minute very quietly
and then he says I love you,papaw.
Papaw says I love you too,jacob, and Jacob gives a little
side nod and a nice little softsmile.
Then he almost quickly removeshis arm, takes a big step to the
(15:15):
left, big, wide step, and foldshis hands in front of him and
he looks at him sideways andgoes dumbass.
I will never forget that.
That was so funny.
That was so funny and I don'tknow.
He pretty much learned all ofhis words from me.
You know, it seems like and Imean that's obviously I say that
(15:39):
a lot and I'm just like, oh mygosh lot.
And I'm just like, oh my gosh,do I call his grandfather a
dumbass, and I don't know it.
Okay, now, before I get to thebig, alarming thing, I want to
say that with the water issuesin his bathroom that we were
dealing with, we just turned thewater line off in the bathroom.
(15:59):
We also ended up having tofigure out that we needed to
lock all of the shampoo anddeodorant and toothpaste up.
So now he's completely relianton us to help him with his
hygiene, more so than before,because now he doesn't even have
access to it, because he wasjust squirting the stuff
everywhere all the time and itwas, you know, hey, that's
expensive, especially whenyou're buying stuff that's clean
(16:21):
and doesn't have chemicals init and stuff.
We locked up the toiletries, weturned off the water and then
he starts this weird thing thatI can hear all the way
downstairs and all the wayacross the house.
So his bathroom cabinets had areally good roller on it so it
closed very securely and if youclose it really slowly it would
(16:42):
go, because I mean they werereally good closers on the
cabinet.
So all of a sudden he developsthis.
You know, I'm like, oh my gosh,this is going on for days.
I could not make him stop.
And I mean I would go up thereand have a nice talk with him.
(17:03):
Please stop doing this.
It's too loud, it's making mecrazy.
I have a nice talk with him.
Please stop doing this.
It's too loud, it's making mecrazy.
I can't stand listening to this.
Please stop.
Find something else.
Let's do this.
How about play that?
And no, he would always goright back.
Ka-chunk, ka-chunk, ka-chunk,ka-ch taped the hell out of it.
(17:29):
And on the painter's tape withSharpie I wrote no and
exclamation points all over itand that stopped him.
He doesn't, you know, reallyunderstand painter's tape and
stuff.
He could have just opened itright up, but it did the job.
That's kind of how I have tomake rules with him.
I remember one time at ouroffice he would just yell I mean
, you know, he just being sillyand I had to make a.
(17:52):
I did really good, one of thoselittle like a Pac-Man head, but
it was a person.
I put hair on it and stuff andmade it with its mouth open and
some lines coming out of itsmouth to indicate yelling, and
then I put a circle and a redline diagonal across it all, so
that meant no yelling.
So that was how we worked onour inside voices.
So anytime I really need tocommunicate something to him, it
(18:14):
seems like I have to write itdown, like right now he's got a
water jug that he will not closeand I wrote all over it close
it, close it, close it.
He still won't close it, but atleast I don't have to tell him.
I guess we were always trying tofind ways to counteract what he
was doing.
That was not a good habit, nota good way to go, and he would
(18:34):
always adjust to that.
He would do what we needed himto do until he figured out a
workaround, and then he would dothe workaround and still do
whatever the thing was, and itwas just maddening.
That's why I was alwaysthreatening or asking him and
threatening him about throwinggames and movies in the garbage
because he would be abusing themor, you know, scratching them
up or just, you know doing crazystuff with them and I would
(18:57):
threaten hey, you want me tothrow it in the garbage, because
that's kind of permanent Now,with the shuffling and the
humming and not leaving thecorner of his room.
I decided to try to make him.
I couldn't get him to come out.
He was not leaving this autismbubble, as she called it.
I couldn't get him to cooperateat all, he would not leave.
So I decided well, I'm going togo and get some crafty stuff.
(19:18):
So I got some contact paper anda bunch of different textured
things.
I got feathers of all sorts, Igot googly eyes, little fake
marshmallows.
I just got a bunch of randomstuff from the craft section at
the store and I made this cutelittle craft corner.
I got washable markers, allkinds of stuff so he could.
He could do anything and hecould stick stuff to the wall
(19:40):
because of the contact paper andI don't know.
I thought it was really cooland I set that all up for him.
I was so excited he had everykind of textured item you could
want without being too messy.
I didn't get him glitter oranything like that, but I did
this whole thing up in thecorner, right where he's at and
I just covered the whole wallwith artsy, fartsy stuff and I
(20:01):
made him these little bins andconnected them to the wall and
there you go.
You know you could do anything.
Now why don't you just do yourautism in this corner and keep
your brain active a little bit?
You know, just do something funand pretty and have colors.
And you know, just staring at awhite wall with a blue carpet,
come on, he never touched it,never.
I would go in there and playwith him and try and he would
(20:23):
humor me.
I tried to show him that youcan just make some weird,
abstract kind of animal and youknow, just make stuff and just
put stuff on the wall.
It doesn't hurt, you can do anyof this and it's fine.
Look at this, how fun, you know.
And he would humor me when Iwas there, but he would never
touch it.
When I wasn't, he made sure tokill his fish.
He didn't want to do any artsand crafts.
He didn't want to do anyhomeschooling, any schoolhouse.
(20:45):
He didn't want to do anygardening.
He didn't want to be outside.
He didn't want to ride thefour-wheeler, he didn't want to
fish.
He didn't get to play games orany kind of media on the iPad or
anything, because of hisbehaviors.
He didn't want to help in thekitchen, he didn't want to make
his own food, he didn't want towash his hands, he didn't want
to wash his little plate, hejust didn't.
He was learning to do stuff buthe just wouldn't do it.
(21:08):
His little hand would just golimp.
Instead of holding a sponge, hewould just limp his whole hand
and just like knuckle, wash aplate.
It was just ridiculous.
I mean just, you know, fuck it.
You know, try to get him tocook eggs.
Even his dad tried to work withhim because his dad's his
favorite person in the world,and he tried to get him to cook
eggs and just no, not having it.
You just whine and complain andmake and just make us suffer,
(21:31):
make us miserable, and that'show he gets out of everything.
Because there's just we can'ttake it.
You know and I keep having toremind myself and my spouse and
he reminds both of us too thatwe were not trained for this.
You know, my spouse is asalesman and I'm basically an
office person.
We're not trained for this.
We never followed that careerpath to work with special people
(21:55):
and be so freaking, patient andknow how to do everything with
them.
You know it's not our field andyou can't be too hard on
yourself if that's not what youwere doing for a living anyway,
right?
I mean, geez man, I even cookedfor a lady whose daughter had
Down syndrome and she was ateacher at the school and I was
(22:16):
like, oh, that's awesome.
Do you guys, do you have her inyour class?
Does she respond well to you?
And she's like, oh no, I willnot teach my own kid in my class
.
She was a special ed teacherbut she would not have her kid
in her class and it just thedynamic is wrong.
So I totally agree with that.
I wasn't in the position at thetime to understand and I
ignorantly asked her and thoughtit would be cool.
(22:38):
But later on I realized throughmy own experiences that no, it
is not cool to try to teach yourkid anything when we're at the
stage.
It just sucks.
I don't have what it takes.
I've done a lot, I've taughthim a lot, I've protected him a
lot.
I've done a lot for this kid,but in all honesty, to do more
therapy type stuff, I don't haveit.
(22:58):
I don't have that.
He has taught me an immenseamount of patience.
I was not a patient personbefore I met him and I have
really grown, but I just don'thave it.
I don't have any more than whatI've been giving him.
He needs help, he needsservices.
He's not getting any.
No one wants to help and itjust sucks.
But anyway, back to this otherpast stuff.
(23:20):
Here is the most alarming thing.
It's not the end of thisepisode, but we're almost there.
Within days of turning 15 yearsold, our son lost all of his
skills, every single skill.
He lost his vocabulary.
He lost the light in his eyes.
He lost the ability to wash hishands at all.
He lost the ability to fold hisclothes at all and put them in
(23:43):
the closet.
He lost the ability to hold asponge.
He lost the ability to wipedown the table, which was one of
his best chores.
I would have him wipe down thetable before mealtime.
Nope, nope, can't do it, can'tdo anything anymore.
He couldn't put on his shoes.
He couldn't do a damn thing.
It was alarming.
He couldn't do anything.
(24:03):
He was just a blob.
He couldn't function, and thehundred word vocabulary that we
were trying to build on everyday was absolutely gone, like it
never existed.
All he would say at first wasnothing.
And then I love you, I love you, I love you, I love you, I love
you, that's it, that's all hewould say.
(24:24):
He has lost everything.
So I'm frantically trying tofigure out what has happened.
I do remember the lady sayingwell, you have to hurry up and
get him all his therapy becauseby the time he gets 16, he's not
going to be able to learnanymore, and I remember that.
Remember, I told you.
So I'm thinking about that.
I'm like but he's 15.
And it's not that he's, it'snot that he's not learning, it's
that he lost what he had.
That's different.
(24:44):
Where did it go?
It was alarming and he's neverrecovered.
He was so much better before hewas 15.
I started researching, of course.
What is going on?
What is going on?
What is going on?
I found only two or threereports, honestly, but they all
said the same thing that it'sapparently a known fact from
research Once a child withsevere autism, I guess, turns 15
(25:09):
, they regress and lose theirspeech and lose their skills.
No one ever told me that.
I never found that in any ofthe research in previous years
that I was doing, and granted,it wasn't, like you know, ask
Jeeves or whatever why does myson not know how to talk anymore
?
But you would think it wouldcome up, no matter what, because
I was always searching the samesubject, which was my son and
(25:29):
his autism, but it never came up.
This completely caught us bysurprise and we've never
recovered.
He's never recovered and I justwant you to know this If your
child is under 15 years old,good luck.
Once 15 comes, hopefully youcan do something.
I don't know, maybe if we workon more vitamins I don't know
what fish oil, d3 and K2,something I don't know,
(25:53):
something to help the brain, Idon't know.
But if your child loses theirskills, I mean not just language
skills, everything that theyever learned in their life, if
your child loses that and theyhave just turned 15, it's normal
, believe it or not,unfortunately, that's what is
going to happen to a lot of ourchildren.
(26:14):
Do you know how much time I putinto this kid and all of the
professionals that worked withhim when they gave a shit and
didn't abuse him in school?
Everything that was put intothis child to help him advance
and learn and grow goneEverything.
He lost everything, and it wasbecause he had a freaking
birthday.
I don't know.
I don't know what to say, but Iwant you to know that is the
(26:37):
most alarming thing thathappened when all these
behaviors started coming up.
So he, you know, his behaviorstarted getting crazy, his
voices started getting crazy,everything started getting a
little bit weird and all of asudden, boom, nothing, nothing
at all, and then definitelyshuffling our feet and staring
at the floor in the corner ofthe room and that's life.
(26:57):
So, uh, yeah, that was fuckingterrible.
My heart dropped out when Iwoke up one day and the normal
jac not there anymore.
Whether he was negative orhappy, it didn't matter.
That kid was gone, completelydifferent kid, and it was just
devastating.
So I'm still taking him to thenon-profit.
(27:17):
I start taking him there moreoften.
I also start taking him to apark that's nearby.
There's a lake there.
I'm trying to I don't knownature it out of him and get him
to do something or respond, youknow.
Again, here's this maybe autism, catatonia, I don't know what
happened.
So I'm taking him to the CPcenter more often.
(27:40):
I still didn't have servicesfor him yet.
All of this is either insuranceor grants or out of pocket.
I'm taking him over to the lakeall the time.
He won't swim unless I go swim,and I didn't even have a bathing
suit that I was willing to wearat the time, so that wasn't any
fun.
I thought, oh, he can play inthe water and I can read a book
(28:00):
and relax.
No, absolutely not.
That's not what it was.
It was just I'm going to standin front of you and whine in a
high-pitched tone and make youlook at me, and then I'm going
to laugh and I'm going to makeyou look at me and I'm going to
jump and I'm going to whine andI'm going to laugh and I'm going
to jump until you get tired andtake me home.
He swam the first time and thatwas it.
And he did it for like 10minutes before he realized that
(28:22):
I wasn't coming in the water.
So he's the one that wants toswim.
He's the one that loves water.
I don't go to his swim class andswim with him.
It just sucked.
I used to also go to Aldibefore we would go to the swim
class, and that was like onWednesdays.
So one Wednesday a month Iwould take him with me to Aldi
before we went to the swim class.
Let me start with this.
He used to go to cashiers andstick out his hand he learned
(28:49):
this in school and introducehimself Hi, I'm Jacob, who's
your name?
That's gone.
Now I start taking him to Aldiand instead of trying to hit on
the, instead of trying to get ingood with the cashiers with
words, now he just is goingafter every woman in Aldi and
going up to them and saying Ilove you, I love you, and then
trying to hug and kiss them, anda couple people were like, oh,
(29:11):
you're so cute.
But most women are like, uh,don't what, get away from me,
you know.
And I'm like, oh, my gosh, whatare you doing?
So now I can't even stand inline.
I have to hold on to him, youknow, and it was just, sometimes
it was sad and offensive andsometimes it was just
embarrassing.
He's 15 and he's trying to go upand mack on women, you know,
(29:32):
even though he's not a sexualperson.
Most people at Aldi are womenshopping, and that's just the
way it was.
And he would just go and try totell everyone that he loved him
and give everyone a kiss and ahug.
That replaced his entirevocabulary.
I couldn't control him hardly,you know.
So then I start having to besuper diligent.
With every time he even lookedat somebody, I would say, no,
(29:54):
leave them alone.
No, no.
And then he would say I loveyou.
I'm like, I'm sorry, I'm sorry,no, you don't love, you, don't
know her.
Jacob, you, you can't love her.
You don't know her.
You know?
Oh, it's okay.
No, it's not, because for mostother women it's not.
So now I have to do this inpublic and let everyone see that
I am trying to tell my kid howto behave.
I'm trying to keep him out ofyour face.
(30:16):
I'm doing the best that I can.
I'm educating him right infront of you.
You know, geez, all I want todo is get the freaking food and
get out of here.
And I have to make a publicdisplay of educating my kid
because people look at me likecan't you take care of your kid?
And then the grandfather has aheart attack.
He's down in Illinois, we're upin Wisconsin.
(30:37):
We got to hurry up, pack up andcome down to Illinois because
he's having a quadruple bypass.
So we're in the waiting room ofthe hospital.
There was this man there.
He was a slightly older man, hewasn't any part of our group
and he was just sitting therefor a long time.
We were all there for hours andhours and Jacob keeps going up
to him and now he doesn't stickout his hand for a handshake
(31:01):
anymore, because he lost thatskill.
So now he just kind of flops theback of his hand out towards
people and just leaves it likethat, like the back of his hand,
front of his hand, facinghimself, and he just, you know,
like what are you supposed to dowith that as an as the other
person?
So he does that and he says Ilove you, I love you.
And this other guy, I'm like no, we don't love strangers, you
(31:24):
don't love him, jacob, you don'tknow him, stop it.
The guy's like.
At first he smiled and thenJacob did it again and I'm like
no, and the guy, I think, said Ilove you too.
And I said Jacob, we don't lovestrangers, you don't know him,
stop saying that.
He goes, oh, it's okay.
I said no, it's really not okay, it's not okay, he doesn't know
you.
So now, yes, this is what I'mdoing out in public, in a
(31:47):
waiting room where, you know, Idon't know, it could be a little
bit of a sensitive place forpeople, you know, and I just, I
don't want my kid kissing peopleand telling them, you know, I
mean I don't trust people.
I don't think that if someone,if someone, were to try to
snatch him God forbid I reallydon't think they'd make it very
far without just letting him go.
(32:07):
But I don't want to think aboutit.
You know what I mean.
I don't know that people whowould do that are very bad and I
don't want to think about howthey would let him go.
But I just don't think thathe's the type of person they
want to steal.
But I don't want to take thechance and have everyone think,
(32:28):
oh, oh, this kid's easy, heloves me already.
Yeah, okay, hey, you want somecandy?
So I'm constantly - He's 15and I'm worried about him, like
he's three and that's how I'mgoing to be for the rest of my
life, because he does notunderstand anything and he's not
afraid of anything.
It just sucks, you know, andthat is where I'm going to leave
it Now.
I did have something veryupsetting happen with the
nonprofit autism group, which Iwill tell you about another time
(32:50):
.
I just wanted to tell you thishappened last night.
I've been having a lot oftrouble getting a closing happy
story for these episodes lately.
But Jacob helped me out lastnight.
His dad was talking to him,somehow it came up.
.
.
Usually Jacob will say somethinglike I'm Batman, or I'm
Spider-Man, or something likethat, and he'll just change his
(33:11):
identity daily and sometimes bythe hour.
So he said something of who hewas to his dad and his dad said
something to him and anyway itends up being that his dad said
or are you a tiger?
Jacob kind of lit up when hesaid tiger.
And then my spouse says Tonythe tiger and Jacob says Tony
the tiger.
And then I said they'regrrrreat! And Jacob, out of the
(33:33):
blue, he goes, the best that hecould..
.
He said they're great.
And then, you know, at the endof our commercials, when we were
kids now I don't watchcommercials anymore and I don't
know if they still do it, butwhen we were kids I'm Gen X here
, so my commercials would alwayshave that voice, the same kind
of voice that lists the sideeffects of drugs on commercials,
(33:54):
that voice, but it would saysomething like part of a
complete breakfast or somethinglike that, and Jacob says
they're great, and then you hearhim go breakfast.
It sounded just like the lastline of the cereal commercials.
It was hilarious and the funnything is that we don't see those
(34:14):
commercials anymore.
He just pulled that out of thedepths of him, you know.
I mean, wow, right, it's reallyneat, because that was buried
deep in there.
We never see that, we nevertalk about that, nothing that I
know of anyway and he justpulled it right out of his hat
like it was just sitting on top.
So breakfast.
(34:36):
So that was cute and that's mycutest story.
Now my next episode isdefinitely on topic, but I'm
going to talk to you a littlebit about the project I've been
working on and I'm going toshare some big information with
you and then we'll get back intoregular podcasting on the
following episode.
You hang in there, you're asuperhero.
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
I just want to jump right intothis.
I know I've been absent for aweek more than I expected to be
and I was planning on justgiving you updates and little
solutions that we came up withto the things that we were
dealing with that I mentioned inthe last episode.
(00:38):
So we were talking about himoverflowing the sink and the
toilet and doing those weirdcrazy voices that scared us and
all kinds of stuff like that.
They all started happening, Ithink, between the ages of 14
and 15.
So I'm just trying to coverthese things because there's
something really big at the endwhich I told you I was going to
(00:59):
share in my last episode and Ididn't get to it.
So let's just get into this.
I remember trying to teach ourson to cook eggs and obviously
he was going to be fullysupervised, but he had some.
I mean, he was demonstratingthat he could do things a little
bit and I was just trying tosee if I could get him to do
anything.
He didn't really want to haveanything to do with cooking eggs
(01:21):
.
He loves hanging out with me inthe kitchen, but he would just
whine and whine and whine everytime.
So I did give up on that veryquickly and you know, we had
taken him out to go camping totry to detox him from
electronics because he wasacting like he was in a cartoon
or something and it reallyfreaked us out.
Well, that happened again and Imade a connection and my spouse
(01:44):
doesn't think so, but I dothink so.
So there's that.
But my spouse had taken upclassical guitar and he was
playing it a lot.
Once he gets locked ontosomething, he just goes for it
and he was playing this guitar alot.
He would wake up really earlyin the morning and go down and
light a fire and play guitar allby himself and just have some
(02:07):
alone time and then he wouldplay for a few more hours and I
mean it was a lot.
You know, he would playwhenever he had a free minute
and he was actually quittingsmoking at the time.
So I was happy about, you know,whatever he needed to do with
that.
And one day our son was tryingto babble at him and I was just
sitting there listening to himplay guitar and our son came in
(02:30):
and just kept trying to babbleat him and babble at him, and
babble at him, and he had beendoing this to us frequently, to
the point where we had to leavethe room.
So it wasn't something like wemissed out on some profound
communication, it was just ourson's way of getting in our face
and creating some sort oftension in the room, which we
(02:50):
learned from the lady at thatnon-profit.
And he just, you know he wasn'tgoing to do or say anything, he
was just trying to, you know,have attention, and I mean a lot
of kids do that anyway whenthey're like five.
That's what he was doing and myspouse didn't answer him fast
enough.
So our son got this reallyweird pitch in his voice and
(03:10):
started talking like that, andhere's what happened he said dad
, dad, dad, dad, and then hekept looking at the guitar
because his dad was playing theguitar, and then he goes dad,
and that made both of us stopand just stare at each other and
then at him.
Well, that got his attention,because that's how he got our
attention.
(03:30):
So he quickly locked onto thatand realized, in my opinion,
that that's the way now to getattention.
You know, they're tired of me.
They're not answering meanymore.
Now I know what to do.
This is the voice.
So then he started talking, likeyeah, and it was really scary.
Mind you, he only had about ahundred words in his vocabulary,
(03:51):
but he did have words at thattime and it scared the hell out
of my spouse for sure.
And I said babe, I think he'strying to match the tone of your
guitar.
I think that he's trying tocompete with your guitar.
I think that he thinks thathe's being neglected for the
guitar, if you know what I mean.
Like I think that he's tryingto compete with your guitar.
I think that he thinks thathe's being neglected for the
guitar, if you know what I mean.
Like I think that he is tryingto compete and he wants to be
(04:11):
the toy.
He doesn't want you to playwith the guitar, he wants you to
play with him, and I reallythink that he did that to show
you that he's as interesting asthe guitar.
You know what I mean.
That's how I saw it.
But my spouse was like no,that's just silly.
No, I don't think so, I justthink he's being scary, you know
.
But of course, if you have anew hobby, you don't want to
(04:33):
think that it's going to getruined because your kid is
reacting negatively to it andnow you won't be able to do it
anymore and that's your onething that you get to do, you
know.
So I understand both sides ofthat, but I really do think that
that's what was going on.
But we couldn't get him to stop.
We ended up taking him back outto the woods and camping again,
and he had to get used to theguitar.
(04:55):
You know, he brought the guitarthis time and was playing it at
the campsite and everything,and we had to just explain to
him that this is daddy's time.
We are going to be quiet duringdaddy's time.
You can wait your turn, andthat's when we started learning
about whose turn it is.
So it's the guitar's turn, andthen it's Jacob's turn and then
(05:16):
it's daddy's turn, you know.
So you get to hold the talkingstick, so to speak.
So we started working on thatand just trying to teach him
that you know you can't just getthe attention of whoever you
want, anytime you want.
There are things happening,people are doing things.
You know you have to wait yourturn.
And then the next thing Iremember is that he would not
(05:36):
leave his room.
This kind of goes along with,you know, when he started hating
everything and all of thatstuff.
But it was really, I mean, onone hand it was kind of nice
having him out of my hair and onthe other hand it was kind of
scary because that was just wayout of character for him.
He was always in my hair and Ididn't know what to do.
He just wouldn't leave his roomand he was just kind of
shuffling and humming and it wasgetting kind of scary.
(05:59):
So all of these things happenedwithin close proximity of each
other.
And these things happened withinclose proximity of each other
and, look, I didn't knowanything back then.
I mean, I don't know.
I did research all the time butI didn't learn what I could
have learned if I would havebeen in contact with other moms
and dads.
I didn't start learning aboutsome things that could have been
wrong with him until I actuallyhad to leave Wisconsin, come to
(06:21):
Illinois and get into theworkplace and I started meeting
parents of kids with severeautism and I started learning
that, oh my gosh, you knowthere's this and that.
And of course there's aFacebook group or two that I'm
in and that's where I learnedall my information.
I cannot find the informationonline.
Well, maybe now you can, butback then you couldn't.
So this was like 10 years ago.
(06:42):
I just I didn't know.
But I want to say now, if yourkid is humming and shuffling in
one spot or just not responding,or just the look in the eye is
different, like our kid, helikes a little bit of eye
contact, but not all the time.
But I know a lot of these kidsdon't like eye contact, but you
can still see their eyes and ifthey end up looking different,
(07:03):
or you know, if your kid startsgetting a little bit weird or
withdrawn, or just I don't know,ghosty, you might look into
this Catatonia thing.
There's a couple differentclassifications of Catatonia,
but you know, the more I learnabout that, the more I wonder if
he was having an episode andmaybe we got lucky and he
(07:23):
slipped out of it.
But I mean it was reallysimilar.
A lot of the stuff he wentthrough was really similar to
this autistic catatonia orwhatever.
And I mean I had been bringinghim to the doctor all the time,
or the nurse practitioner,whoever I could.
I was always like what's wrongwith him, something's going on,
depending what it was.
I mean just so many things.
We were always and nobodycaught anything.
(07:44):
The only thing that the medicalprofessionals ever did was wait
for me to say hey, you knowwhat his symptoms match this
that I'm finding right now, suchas with the toe and the.
You know, when he kicked hisbed and all that, and we ended
up getting him diagnosed withRaynaud's disease.
He didn't have Raynaud'sdisease, he had kick the bed
frame disease.
But these doctors are just like, oh yeah, yeah, let's do, let's
(08:07):
go with that, you know, and sothat was no help.
But I just, you know, I feelthat the medical profession has
failed us numerous times.
I think that he's got lots ofother things going on that have
not been diagnosed, which I'llget into another time.
But I just wanted to tell youabout this catatonia thing
because, man, I think that wewere close to some kind of
(08:29):
disaster with that and nobodycaught it.
But the lady at the nonprofit,when I explained it to her, she
said, well, that's his bubble,that's his autism bubble and he
will stay there forever if youlet him.
You have to bring him out ofthat autism bubble.
You have to do whatever you cando to make him get out of that
comfort zone.
That's the comfort zone hewants to be in.
(08:50):
I don't have to think, I don'thave to try, I don't have to
function, I don't have to doanything but stand here and be
autistic, and that's where Iwant to be.
This is comfortable for me.
I don't want to try.
That's how she explained it.
So I was like, oh my gosh, youknow.
So we started learning that youknow, do patty cake, patty cake
(09:10):
with the cross your arm, youknow, arms across the body and
start making him slap your hands, cross body slaps and just all
kinds of just cross body stuffwhere your right arm crosses
your left side of your body, etc.
With your hands and your feet.
I mean his hands and his feet.
You know, that was one thingand he seems to really enjoy
that.
And I did start, you know,taking him to that CP center and
(09:33):
she sent us home with a bigtherapy ball and exercises that
we had to do with him and wewere also instructed for dad to
start wrestling with him to.
I don't know, it's some kind ofphysical therapy, you know,
just let him squeeze you and lethim.
I don't know, he needed somekind of testosterone outlet, I
guess is what it was.
(09:54):
And we have had experiences inthe past where he wants to play
with dad and they had like acouple Nerf swords and
lightsabers and stuff like thatand Jacob would get really crazy
with it.
He would beat his dad so badlywith these swords and
lightsabers and his dad wouldjust be laughing and you know
it's all in good fun and he wasreally.
(10:15):
You know he's strong and he'sbig and Jacob was small and not
strong and so it didn't botherhim.
But Jacob would go from reallyjust wailing on him with this
sword or lightsaber to having afull-on meltdown, crying and
screaming and inconsolable.
So we weren't really too keenon this whole wrestle with dad
thing but they did a coupletimes.
(10:36):
But I mean, who has room?
He was already like you know,5'7", 5'8" and daddy's over six
foot, so who has room for that?
But they did a little bit hereand there.
But we just usually docompression, hugs and stuff or
squeezes all up and down thearms and legs and we do get him
massages now.
But those were some of thesuggestions to help him with his
(10:59):
weirdness that he wasdeveloping and both the weird
voice and the shuffling, humming, seclusion behavior.
And right around that same timethere was another thing that had
happened when he was not afraidof the four-wheeler.
We were all outside one day andTweedledum was there.
And Tweedledum is standing outthere and says Jacob, you know,
(11:20):
he's running around a little bitrestless.
And Tweedledum says hey, jacob,you want to go for a ride on
the four-wheeler with Papaw?
And Jacob says yes, I was likeokay, well, that was unexpected,
you know, and me and my spouseare just kind of looking at each
other like, wow, okay, neat.
Two minutes later Jacob is likegetting restless again, like
waiting for the cue to get onthe four-wheeler and take a ride
(11:41):
.
I look over at Tweedledum.
I'm like he's ready, andTweedledum goes oh, I'm tired, I
changed my mind, I don't wantto go.
And like you can't do that tohim.
Maybe you can do that to otherkids, but you can't do that to
Jake.
What is the problem?
You can't just offer himentertainment and then say, no,
I don't feel like it within twominutes.
(12:02):
What is wrong with you?
So that really sucked.
But eventually Jacob did startriding the four-wheeler again
and his grandpa was not aroundwhen he was doing it.
We would all go down to thefishing dock that we had there
and we would let Jacob ride thetrail behind us.
Right there, we were sittingthere and Jacob's riding up and
(12:23):
down the trail but then he ridesto the left of us and we hear
the four-wheeler stop.
So we're instantly like, oh no,what happened?
There's nothing but woods, butwho knows?
You know, we got to go, so it'sjust just out of our view off
the trail, and we go down thereand it's a play place that we
had set up.
That's where he was stopped.
We went down to figure out what.
Did he get stuck?
Did he have an accident?
(12:44):
What in the world's going on?
And he's standing on the groundwith the four-wheeler running
and he's yanking on it on theluggage bar or whatever.
And he's just yanking on it andthen he's picking it up and
trying to, you know, turn theback end of it a little bit to
the right, and then he's yankingon it some more and then
picking it up.
I'm like, what are you doing?
We learned that every time notevery time, but most times, I
(13:08):
guess when he would ride thefour-wheeler as a passenger with
his grandfather, hisgrandfather would somehow get
over there and not be able tomake the turn and he would pull
up and then get off and thenyank on the bar and pick it up
and wrestle the ass end of thequad around until he could turn
(13:28):
the stupid thing and get back onthe trail.
And this is the habit thatJacob learned from.
So he thought.
I think he thought that hecould.
He's just supposed to ride downto this little pine tree area,
pull in in this little stupidposition, get off and then try
to wrestle the thing out, whenour son is very good at steering
(13:49):
this thing and there'sabsolutely no reason for him to
do that.
I guess be careful what kind ofhabits your kids are seeing,
because they'll think that'sjust the way to do it.
You know, glad that we foundthat out and broke him of that.
We were like no, that's just,that's just silly.
You know who does that.
Where'd him of that?
We were like no, that's justsilly, you know who does that,
where'd you get that?
And he says Peppa, and okay,well, we don't have to do that,
(14:10):
you can just ride it and turnaround the way you always do.
He's like okay, but I wonder ifit was some kind of experience
with his grandpa on thatfour-wheeler.
That made him stop wanting toride the four-wheeler.
He loved that more thananything and it really was
shocking and sad when he stoppedwanting to ride it and I'm glad
he got back into it.
But I wonder, you never know,because he's never, ever going
(14:32):
to tell you.
Even in his chatter there wasno way.
I never heard anything aboutthat.
So another thing that happenedand I may have told this story.
It's short and sweet but it'shilarious to me.
So I'm going to say it againbecause it was all within this
time frame.
It was, I think I want to sayit was fall, I don't know.
Tweedledum was there and he wassitting on a cooler in our
living room next to thefireplace.
(14:54):
Jacob came up to him.
He stood next to hisgrandfather and put his arm
around his shoulders, stoodthere for a minute very quietly
and then he says I love you,papaw.
Papaw says I love you too,jacob, and Jacob gives a little
side nod and a nice little softsmile.
Then he almost quickly removeshis arm, takes a big step to the
(15:15):
left, big, wide step, and foldshis hands in front of him and
he looks at him sideways andgoes dumbass.
I will never forget that.
That was so funny.
That was so funny and I don'tknow.
He pretty much learned all ofhis words from me.
You know, it seems like and Imean that's obviously I say that
(15:39):
a lot and I'm just like, oh mygosh lot.
And I'm just like, oh my gosh,do I call his grandfather a
dumbass, and I don't know it.
Okay, now, before I get to thebig, alarming thing, I want to
say that with the water issuesin his bathroom that we were
dealing with, we just turned thewater line off in the bathroom.
(15:59):
We also ended up having tofigure out that we needed to
lock all of the shampoo anddeodorant and toothpaste up.
So now he's completely relianton us to help him with his
hygiene, more so than before,because now he doesn't even have
access to it, because he wasjust squirting the stuff
everywhere all the time and itwas, you know, hey, that's
expensive, especially whenyou're buying stuff that's clean
(16:21):
and doesn't have chemicals init and stuff.
We locked up the toiletries, weturned off the water and then
he starts this weird thing thatI can hear all the way
downstairs and all the wayacross the house.
So his bathroom cabinets had areally good roller on it so it
closed very securely and if youclose it really slowly it would
(16:42):
go, because I mean they werereally good closers on the
cabinet.
So all of a sudden he developsthis.
You know, I'm like, oh my gosh,this is going on for days.
I could not make him stop.
And I mean I would go up thereand have a nice talk with him.
(17:03):
Please stop doing this.
It's too loud, it's making mecrazy.
I have a nice talk with him.
Please stop doing this.
It's too loud, it's making mecrazy.
I can't stand listening to this.
Please stop.
Find something else.
Let's do this.
How about play that?
And no, he would always goright back.
Ka-chunk, ka-chunk, ka-chunk,ka-ch taped the hell out of it.
(17:29):
And on the painter's tape withSharpie I wrote no and
exclamation points all over itand that stopped him.
He doesn't, you know, reallyunderstand painter's tape and
stuff.
He could have just opened itright up, but it did the job.
That's kind of how I have tomake rules with him.
I remember one time at ouroffice he would just yell I mean
, you know, he just being sillyand I had to make a.
(17:52):
I did really good, one of thoselittle like a Pac-Man head, but
it was a person.
I put hair on it and stuff andmade it with its mouth open and
some lines coming out of itsmouth to indicate yelling, and
then I put a circle and a redline diagonal across it all, so
that meant no yelling.
So that was how we worked onour inside voices.
So anytime I really need tocommunicate something to him, it
(18:14):
seems like I have to write itdown, like right now he's got a
water jug that he will not closeand I wrote all over it close
it, close it, close it.
He still won't close it, but atleast I don't have to tell him.
I guess we were always trying tofind ways to counteract what he
was doing.
That was not a good habit, nota good way to go, and he would
(18:34):
always adjust to that.
He would do what we needed himto do until he figured out a
workaround, and then he would dothe workaround and still do
whatever the thing was, and itwas just maddening.
That's why I was alwaysthreatening or asking him and
threatening him about throwinggames and movies in the garbage
because he would be abusing themor, you know, scratching them
up or just, you know doing crazystuff with them and I would
(18:57):
threaten hey, you want me tothrow it in the garbage, because
that's kind of permanent Now,with the shuffling and the
humming and not leaving thecorner of his room.
I decided to try to make him.
I couldn't get him to come out.
He was not leaving this autismbubble, as she called it.
I couldn't get him to cooperateat all, he would not leave.
So I decided well, I'm going togo and get some crafty stuff.
(19:18):
So I got some contact paper anda bunch of different textured
things.
I got feathers of all sorts, Igot googly eyes, little fake
marshmallows.
I just got a bunch of randomstuff from the craft section at
the store and I made this cutelittle craft corner.
I got washable markers, allkinds of stuff so he could.
He could do anything and hecould stick stuff to the wall
(19:40):
because of the contact paper andI don't know.
I thought it was really cooland I set that all up for him.
I was so excited he had everykind of textured item you could
want without being too messy.
I didn't get him glitter oranything like that, but I did
this whole thing up in thecorner, right where he's at and
I just covered the whole wallwith artsy, fartsy stuff and I
(20:01):
made him these little bins andconnected them to the wall and
there you go.
You know you could do anything.
Now why don't you just do yourautism in this corner and keep
your brain active a little bit?
You know, just do something funand pretty and have colors.
And you know, just staring at awhite wall with a blue carpet,
come on, he never touched it,never.
I would go in there and playwith him and try and he would
(20:23):
humor me.
I tried to show him that youcan just make some weird,
abstract kind of animal and youknow, just make stuff and just
put stuff on the wall.
It doesn't hurt, you can do anyof this and it's fine.
Look at this, how fun, you know.
And he would humor me when Iwas there, but he would never
touch it.
When I wasn't, he made sure tokill his fish.
He didn't want to do any artsand crafts.
He didn't want to do anyhomeschooling, any schoolhouse.
(20:45):
He didn't want to do anygardening.
He didn't want to be outside.
He didn't want to ride thefour-wheeler, he didn't want to
fish.
He didn't get to play games orany kind of media on the iPad or
anything, because of hisbehaviors.
He didn't want to help in thekitchen, he didn't want to make
his own food, he didn't want towash his hands, he didn't want
to wash his little plate, hejust didn't.
He was learning to do stuff buthe just wouldn't do it.
(21:08):
His little hand would just golimp.
Instead of holding a sponge, hewould just limp his whole hand
and just like knuckle, wash aplate.
It was just ridiculous.
I mean just, you know, fuck it.
You know, try to get him tocook eggs.
Even his dad tried to work withhim because his dad's his
favorite person in the world,and he tried to get him to cook
eggs and just no, not having it.
You just whine and complain andmake and just make us suffer,
(21:31):
make us miserable, and that'show he gets out of everything.
Because there's just we can'ttake it.
You know and I keep having toremind myself and my spouse and
he reminds both of us too thatwe were not trained for this.
You know, my spouse is asalesman and I'm basically an
office person.
We're not trained for this.
We never followed that careerpath to work with special people
(21:55):
and be so freaking, patient andknow how to do everything with
them.
You know it's not our field andyou can't be too hard on
yourself if that's not what youwere doing for a living anyway,
right?
I mean, geez man, I even cookedfor a lady whose daughter had
Down syndrome and she was ateacher at the school and I was
(22:16):
like, oh, that's awesome.
Do you guys, do you have her inyour class?
Does she respond well to you?
And she's like, oh no, I willnot teach my own kid in my class
.
She was a special ed teacherbut she would not have her kid
in her class and it just thedynamic is wrong.
So I totally agree with that.
I wasn't in the position at thetime to understand and I
ignorantly asked her and thoughtit would be cool.
(22:38):
But later on I realized throughmy own experiences that no, it
is not cool to try to teach yourkid anything when we're at the
stage.
It just sucks.
I don't have what it takes.
I've done a lot, I've taughthim a lot, I've protected him a
lot.
I've done a lot for this kid,but in all honesty, to do more
therapy type stuff, I don't haveit.
(22:58):
I don't have that.
He has taught me an immenseamount of patience.
I was not a patient personbefore I met him and I have
really grown, but I just don'thave it.
I don't have any more than whatI've been giving him.
He needs help, he needsservices.
He's not getting any.
No one wants to help and itjust sucks.
But anyway, back to this otherpast stuff.
(23:20):
Here is the most alarming thing.
It's not the end of thisepisode, but we're almost there.
Within days of turning 15 yearsold, our son lost all of his
skills, every single skill.
He lost his vocabulary.
He lost the light in his eyes.
He lost the ability to wash hishands at all.
He lost the ability to fold hisclothes at all and put them in
(23:43):
the closet.
He lost the ability to hold asponge.
He lost the ability to wipedown the table, which was one of
his best chores.
I would have him wipe down thetable before mealtime.
Nope, nope, can't do it, can'tdo anything anymore.
He couldn't put on his shoes.
He couldn't do a damn thing.
It was alarming.
He couldn't do anything.
(24:03):
He was just a blob.
He couldn't function, and thehundred word vocabulary that we
were trying to build on everyday was absolutely gone, like it
never existed.
All he would say at first wasnothing.
And then I love you, I love you, I love you, I love you, I love
you, that's it, that's all hewould say.
(24:24):
He has lost everything.
So I'm frantically trying tofigure out what has happened.
I do remember the lady sayingwell, you have to hurry up and
get him all his therapy becauseby the time he gets 16, he's not
going to be able to learnanymore, and I remember that.
Remember, I told you.
So I'm thinking about that.
I'm like but he's 15.
And it's not that he's, it'snot that he's not learning, it's
that he lost what he had.
That's different.
(24:44):
Where did it go?
It was alarming and he's neverrecovered.
He was so much better before hewas 15.
I started researching, of course.
What is going on?
What is going on?
What is going on?
I found only two or threereports, honestly, but they all
said the same thing that it'sapparently a known fact from
research Once a child withsevere autism, I guess, turns 15
(25:09):
, they regress and lose theirspeech and lose their skills.
No one ever told me that.
I never found that in any ofthe research in previous years
that I was doing, and granted,it wasn't, like you know, ask
Jeeves or whatever why does myson not know how to talk anymore
?
But you would think it wouldcome up, no matter what, because
I was always searching the samesubject, which was my son and
(25:29):
his autism, but it never came up.
This completely caught us bysurprise and we've never
recovered.
He's never recovered and I justwant you to know this If your
child is under 15 years old,good luck.
Once 15 comes, hopefully youcan do something.
I don't know, maybe if we workon more vitamins I don't know
what fish oil, d3 and K2,something I don't know,
(25:53):
something to help the brain, Idon't know.
But if your child loses theirskills, I mean not just language
skills, everything that theyever learned in their life, if
your child loses that and theyhave just turned 15, it's normal
, believe it or not,unfortunately, that's what is
going to happen to a lot of ourchildren.
(26:14):
Do you know how much time I putinto this kid and all of the
professionals that worked withhim when they gave a shit and
didn't abuse him in school?
Everything that was put intothis child to help him advance
and learn and grow goneEverything.
He lost everything, and it wasbecause he had a freaking
birthday.
I don't know.
I don't know what to say, but Iwant you to know that is the
(26:37):
most alarming thing thathappened when all these
behaviors started coming up.
So he, you know, his behaviorstarted getting crazy, his
voices started getting crazy,everything started getting a
little bit weird and all of asudden, boom, nothing, nothing
at all, and then definitelyshuffling our feet and staring
at the floor in the corner ofthe room and that's life.
(26:57):
So, uh, yeah, that was fuckingterrible.
My heart dropped out when Iwoke up one day and the normal
jac not there anymore.
Whether he was negative orhappy, it didn't matter.
That kid was gone, completelydifferent kid, and it was just
devastating.
So I'm still taking him to thenon-profit.
(27:17):
I start taking him there moreoften.
I also start taking him to apark that's nearby.
There's a lake there.
I'm trying to I don't knownature it out of him and get him
to do something or respond, youknow.
Again, here's this maybe autism, catatonia, I don't know what
happened.
So I'm taking him to the CPcenter more often.
(27:40):
I still didn't have servicesfor him yet.
All of this is either insuranceor grants or out of pocket.
I'm taking him over to the lakeall the time.
He won't swim unless I go swim,and I didn't even have a bathing
suit that I was willing to wearat the time, so that wasn't any
fun.
I thought, oh, he can play inthe water and I can read a book
(28:00):
and relax.
No, absolutely not.
That's not what it was.
It was just I'm going to standin front of you and whine in a
high-pitched tone and make youlook at me, and then I'm going
to laugh and I'm going to makeyou look at me and I'm going to
jump and I'm going to whine andI'm going to laugh and I'm going
to jump until you get tired andtake me home.
He swam the first time and thatwas it.
And he did it for like 10minutes before he realized that
(28:22):
I wasn't coming in the water.
So he's the one that wants toswim.
He's the one that loves water.
I don't go to his swim class andswim with him.
It just sucked.
I used to also go to Aldibefore we would go to the swim
class, and that was like onWednesdays.
So one Wednesday a month Iwould take him with me to Aldi
before we went to the swim class.
Let me start with this.
He used to go to cashiers andstick out his hand he learned
(28:49):
this in school and introducehimself Hi, I'm Jacob, who's
your name?
That's gone.
Now I start taking him to Aldiand instead of trying to hit on
the, instead of trying to get ingood with the cashiers with
words, now he just is goingafter every woman in Aldi and
going up to them and saying Ilove you, I love you, and then
trying to hug and kiss them, anda couple people were like, oh,
(29:11):
you're so cute.
But most women are like, uh,don't what, get away from me,
you know.
And I'm like, oh, my gosh, whatare you doing?
So now I can't even stand inline.
I have to hold on to him, youknow, and it was just, sometimes
it was sad and offensive andsometimes it was just
embarrassing.
He's 15 and he's trying to go upand mack on women, you know,
(29:32):
even though he's not a sexualperson.
Most people at Aldi are womenshopping, and that's just the
way it was.
And he would just go and try totell everyone that he loved him
and give everyone a kiss and ahug.
That replaced his entirevocabulary.
I couldn't control him hardly,you know.
So then I start having to besuper diligent.
With every time he even lookedat somebody, I would say, no,
(29:54):
leave them alone.
No, no.
And then he would say I loveyou.
I'm like, I'm sorry, I'm sorry,no, you don't love, you, don't
know her.
Jacob, you, you can't love her.
You don't know her.
You know?
Oh, it's okay.
No, it's not, because for mostother women it's not.
So now I have to do this inpublic and let everyone see that
I am trying to tell my kid howto behave.
I'm trying to keep him out ofyour face.
(30:16):
I'm doing the best that I can.
I'm educating him right infront of you.
You know, geez, all I want todo is get the freaking food and
get out of here.
And I have to make a publicdisplay of educating my kid
because people look at me likecan't you take care of your kid?
And then the grandfather has aheart attack.
He's down in Illinois, we're upin Wisconsin.
(30:37):
We got to hurry up, pack up andcome down to Illinois because
he's having a quadruple bypass.
So we're in the waiting room ofthe hospital.
There was this man there.
He was a slightly older man, hewasn't any part of our group
and he was just sitting therefor a long time.
We were all there for hours andhours and Jacob keeps going up
to him and now he doesn't stickout his hand for a handshake
(31:01):
anymore, because he lost thatskill.
So now he just kind of flops theback of his hand out towards
people and just leaves it likethat, like the back of his hand,
front of his hand, facinghimself, and he just, you know,
like what are you supposed to dowith that as an as the other
person?
So he does that and he says Ilove you, I love you.
And this other guy, I'm like no, we don't love strangers, you
(31:24):
don't love him, jacob, you don'tknow him, stop it.
The guy's like.
At first he smiled and thenJacob did it again and I'm like
no, and the guy, I think, said Ilove you too.
And I said Jacob, we don't lovestrangers, you don't know him,
stop saying that.
He goes, oh, it's okay.
I said no, it's really not okay, it's not okay, he doesn't know
you.
So now, yes, this is what I'mdoing out in public, in a
(31:47):
waiting room where, you know, Idon't know, it could be a little
bit of a sensitive place forpeople, you know, and I just, I
don't want my kid kissing peopleand telling them, you know, I
mean I don't trust people.
I don't think that if someone,if someone, were to try to
snatch him God forbid I reallydon't think they'd make it very
far without just letting him go.
(32:07):
But I don't want to think aboutit.
You know what I mean.
I don't know that people whowould do that are very bad and I
don't want to think about howthey would let him go.
But I just don't think thathe's the type of person they
want to steal.
But I don't want to take thechance and have everyone think,
(32:28):
oh, oh, this kid's easy, heloves me already.
Yeah, okay, hey, you want somecandy?
So I'm constantly - He's 15and I'm worried about him, like
he's three and that's how I'mgoing to be for the rest of my
life, because he does notunderstand anything and he's not
afraid of anything.
It just sucks, you know, andthat is where I'm going to leave
it Now.
I did have something veryupsetting happen with the
nonprofit autism group, which Iwill tell you about another time
(32:50):
.
I just wanted to tell you thishappened last night.
I've been having a lot oftrouble getting a closing happy
story for these episodes lately.
But Jacob helped me out lastnight.
His dad was talking to him,somehow it came up.
.
.
Usually Jacob will say somethinglike I'm Batman, or I'm
Spider-Man, or something likethat, and he'll just change his
(33:11):
identity daily and sometimes bythe hour.
So he said something of who hewas to his dad and his dad said
something to him and anyway itends up being that his dad said
or are you a tiger?
Jacob kind of lit up when hesaid tiger.
And then my spouse says Tonythe tiger and Jacob says Tony
the tiger.
And then I said they'regrrrreat! And Jacob, out of the
(33:33):
blue, he goes, the best that hecould..
.
He said they're great.
And then, you know, at the endof our commercials, when we were
kids now I don't watchcommercials anymore and I don't
know if they still do it, butwhen we were kids I'm Gen X here
, so my commercials would alwayshave that voice, the same kind
of voice that lists the sideeffects of drugs on commercials,
(33:54):
that voice, but it would saysomething like part of a
complete breakfast or somethinglike that, and Jacob says
they're great, and then you hearhim go breakfast.
It sounded just like the lastline of the cereal commercials.
It was hilarious and the funnything is that we don't see those
(34:14):
commercials anymore.
He just pulled that out of thedepths of him, you know.
I mean, wow, right, it's reallyneat, because that was buried
deep in there.
We never see that, we nevertalk about that, nothing that I
know of anyway and he justpulled it right out of his hat
like it was just sitting on top.
So breakfast.
(34:36):
So that was cute and that's mycutest story.
Now my next episode isdefinitely on topic, but I'm
going to talk to you a littlebit about the project I've been
working on and I'm going toshare some big information with
you and then we'll get back intoregular podcasting on the
following episode.
You hang in there, you're asuperhero.
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