November 27, 2024 • 35 mins
Is the holiday season a joyful experience for families navigating severe autism? Join me, Shannon Chamberlin, in this heartfelt episode of the Parenting Severe Autism Podcast as I share our journey through seasonal traditions with our son. Through these stories, I look at how we’ve managed to create a harmonious environment that supports Jacob's development and our family’s unity.
Caring for a child with severe autism comes with its own set of challenges and celebrations. Learn about the routines we've embraced, from soothing spa days with sugar scrubs to creative solutions for bath time that empower Jacob’s independence. I’ll share how yoga and breathing exercises have become indispensable tools in easing his headaches and promoting emotional regulation, especially during transitions. These practices are not just about care; they’re about fostering joy and effectiveness while building resilience and independence. Our journey is filled with small victories that highlight the deep connection and mutual understanding I share with Jacob.
Finally, we address the stress and complexities of managing behavioral challenges and maintaining emotional balance in the face of holiday disruptions. Whether dealing with meltdowns, medication adjustments, or the constant echolalia, we emphasize the importance of teaching choices and celebrating moments of responsibility. I discuss the impact of environmental factors and share personal reflections on resilience and self-care for parents. As the holiday season approaches, I encourage listeners to find moments of respite and support, preparing for a return to normalcy with renewed strength and understanding.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon (00:18):
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your Sh.
, .
I'm so happy that you're herewith me today.
For more information about eachof these episodes, you can head
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, show notes, contact, email,social media page, coupon codes
(00:41):
and merch, as well as a link tosupport the show where you can
just buy me a coffee for aslittle as $1, and a portion of
the proceeds from that programand from any merch sold will go
towards helping other severeautism families in need who may
not be able to afford thesensory items, therapy items or
(01:04):
specialty foods for their lovedone.
Well, apparently it's almostThanksgiving and I have been
reminiscing about our pastholidays.
There was a time when we wereable to enjoy our holidays as a
family, largely because Jacobstill enjoyed things.
We didn't force him into a lotof Halloween because he never
really enjoyed Halloween.
(01:26):
My very first Halloween withthem, we got all done up and he
was Spider-Man and we wentaround the neighborhood.
We got about five houses downand he was already crying and
you know, it was just a lot ofattention.
Everyone always thinks he'scute anyway, and I don't know if
it's because he was cold andcute or.
.
.
it was just too much, but wherehe would normally thrive on all
(01:46):
the attention, with everyonesaying how cute he is, he broke
down.
It was just too much.
I guess by the time we got himback home he just had a snotty
face and he was just notenjoying Halloween.
With Thanksgiving and Christmas, that always seemed like fun.
I always learned a lot about ourson during the holidays because
of all the different familythat we used to have to go see.
(02:09):
We went to one of my spouse'saunt's houses she was hosting
that year.
I learned the types of foodthat he doesn't like.
The biggest thing was he didnot like mashed potatoes.
They had a huge buffet of foodand we put everything on his
plate and he was so pissed offthat there were these mashed
potatoes on his plate.
He didn't want anything to dowith them.
He didn't mind if the foodswere touching or anything like
(02:32):
that.
He just hated the mashedpotatoes.
I think he didn't like thetexture.
I remembered that forever andever and I always told my spouse
hey look, don't give him mashedpotatoes, because it really did
upset him and if you're tryingto have a good time, that's the
last thing you want to do, right?
So we try to just keep it tothings that he likes.
He likes loud flavors like sourapple and pickles and you know
(02:52):
just loud things like that.
I tried to carry my holidaytraditions from my family into
this family, so what we alwaysdid was we would have
Thanksgiving dinner and then wewould have a few cocktails and
decorate the tree, and the firstcouple of years it was just the
three of us and our neighborscame over and hung out and we
have the cutest little pictures.
(03:13):
They actually were pretty goodbuddies.
After that initial scare thathe gave her when he barged into
their house for no reason.
They were really cute hangingout together.
She was significantly youngerand that's just the way Jacob
needs his peers to be eithersignificantly older or
significantly younger, not somuch into peers his own age.
(03:34):
So that was really cute and fun.
And during those years there wasa thing that we didn't realize,
so I want to get this out incase any of you are in this
situation.
We could not get Jacob'ssupplemental security disability
income because he was found tobe qualified for it and he would
receive it, and then they wouldfind that his dad made too much
(03:56):
money in the business.
Even after we got incorporatedfrom a sole proprietorship to an
S-Corp, we still couldn't getthe money, and it turned out
that the accountant we wereusing had not been accounting
for him.
So later on we did get a lot ofmoney back.
But disability income, which isthe federal income, does depend
(04:19):
on the parent's income, whetherhe gets it or not and how much
he gets.
He was receiving it and thenthey decided that we made was
receiving it, and then theydecided that we made too much
money and then they decided thathe should have to pay the money
back.
That made Christmas reallydifficult.
We were really happy when wemoved into the home that I have
been telling you about on allthat land, because it was a big
(04:40):
kitchen, big enough house tohost everybody and it had a good
draw.
The nature, all that land andall the beauty made everyone in
the family want to come up there, and it was about an eight-hour
drive, so we were very grateful.
We had a ball on our gettingready for our first Thanksgiving
in this new house, even thoughthere was some friction with
(05:02):
school and we still couldn'tfigure out what was going on
there.
We were able to just removeourselves from the situation and
enjoy the holidays with ourfamily.
What I really started to noticeduring these holidays was how
well my son knows me, and itmade me laugh so hard.
Everyone who didn't live withus thought I was crazy and they
(05:23):
looked at me like they thought Iwas I don't know like maybe I
needed some medical attention.
It was a weird thing and if youhave this connection with your
child then you probablyunderstand.
When they do something ormurmur something about you or
your behavior, there is kind ofan inside thing between the two
of you.
Everyone outside of it theylook at you like you're crazy,
(05:45):
right?
Anyway, we're all sitting atthe table and I had been working
with Jacob on some things.
One was that he didn't have toeat everything all at once and
he didn't have to throw it inthe garbage if he didn't eat it
all at once.
There was something calledsaving it for later.
I could tell that he was nothaving a good time with his food
anymore.
He had way more than he shouldhave on his plate as usual on
(06:08):
the holidays, everybody doesthat but I could tell that he
was done, but he was stilleating, so I kept trying to
convince him that if he stoppedeating it would be okay and we
could save it for later.
So I'm like, okay, are you allfull?
Are you full?
Do you want to stop eating?
And I can put it away.
Save it for later.
And that was the only phrasethat would get him to do it.
(06:28):
I had to go through all theconniptions of all the different
words, but save it for later isthe phrase that he will lock in
on and agree to.
And it had gone on for quite awhile before he agreed.
And we kind of had theattention of the family.
While, you know, while theywere sitting at the table,
everyone was in their ownconversations, but they also
knew that he and I were having athing here.
And finally he's like, yes,okay.
(06:50):
And he starts to kind of removehimself from the table as I
start to take his plate and getready to put it in a dish for
later.
And he has this way of talking.
Well, he used to.
He likes to do the movienarration voices where it's like
real deep and he'll talk realslow, out of the blue.
You hear him say 20 years laterI laughed so hard I had tears
(07:16):
streaming down my face and noone understood why that was
funny.
Well, first, that was reallycute.
I mean, where did that comefrom?
Right, I've never heard him saythat and that was so many words
all at once, and I was reallyjust tickled about the whole
thing.
But it really made me realizewhat he thinks of me.
And he was so right because Iwas so busy, you know, and I was
(07:38):
always just juggling a milliondifferent things, and I really
think that he felt that way,like, yeah, okay, you'll save it
for later, I'll see it in 20years.
Thanks, mom.
You know, this is because, like, if he ripped his pants or he
popped a button off his pants,then I was gonna, you know, I
had every intention of sewingthat button back on.
(07:59):
It didn't take 20 years, but it, you know, it might take a
while.
I thought that was hilariousand that was probably my fondest
memory of the holidays at ourhouse.
I remember that afterThanksgiving dinner, his grandma
wanted to have him help hershop, and this is a really unfun
way to do it, but this is theway she insists on doing it with
(08:23):
everybody.
Okay, so her thing is sheeither wants to take you to the
store and ask you what you likeand then get that for you right
in front of you.
Or she likes to have you lookthrough the website or a
magazine or something and tellher what you like and what you
want and then she'll get it foryou.
And yes, those are gifts, butyou know the kind that get
(08:44):
wrapped up and are surprises.
She likes to act like they'restill surprises.
So she sat down with our son atthe table and put his iPad to
good use.
I never even thought aboutusing the iPad to shop.
I just used it for hisentertainment.
So that was cute.
But yeah, she sat down with himprobably for I don't know, I
(09:05):
swear it was a couple of hoursand she just had him on.
Like GameStop and whateverother online stores, you can
look at video games and moviesand pick out everything that he
wanted.
So they had a little specialtime together.
I didn't see any harm in it atthe time.
Later on I grew to understandthat this was an issue, but it
(09:28):
was really cute.
It didn't last long.
We did have a few and he alwaysdecorated the tree with me.
It was great fun.
It drove me absolutely nutsbecause he would put all the
ornaments in one little spot onthe tree.
You know, I had to praise himand tell him how good it was and
try to use the power ofpositive suggestion to show him
that we kind of want themdistributed.
(09:49):
But he insisted on putting themin this little spot every year
so he would go to bed and Iwould go and change them all
around and he didn't seem tomind after that.
I was just happy that he wasdecorating.
He would make little ornamentsat school and bring those home,
so we've always saved those andit was a fun time for a while.
As I mentioned in my hindsightepisode, there are certain
(10:12):
things that seem better when hewas younger, and that was one of
them.
I have a couple things I hadbeen working on with him since
the townhouse.
Okay, so we were there fromwhen he was younger, and that
was one of them.
I have a couple things I hadbeen working on with him since
the townhouse.
Okay, so we were there fromwhen he was about seven years
old to 11, eight, nine, 10.
Yeah, seven years old to 11years old.
I think during that 10 and 11year mark I had been trying to
(10:34):
teach him to bathe himself alittle bit, because my neighbor
didn't understand autism at thetime, and neither did I.
She learned that I had to bathehim.
I threw him in the bath everyother day, so three times a week
or so.
I was giving him a bath.
I got to do everything.
She was like, well, how old ishe?
You shouldn't be having tobathe him at this age.
(10:56):
And I was like, well, you know,it's hard to explain, I guess,
but really he doesn't.
I don't know if it's that hecan't or that he won't, I think
it's both.
Because he's perfectly able touse his hands, but when you give
him something in his hand andask him to use it to wipe
himself or a plate or a windowor a table or anything, his hand
(11:17):
is like a wet noodle and it'sjust completely ineffective and
it's really annoying.
That was one of the reasons thatI had to bathe him, because I
tried to get him to do it, buthe's just so floppy and useless
and I just was like I don't havetime for this, I need to get
this done.
I don't want to do this allnight, but he was so waxy, by
the way, and he still is, so Iwould always make this brown
(11:45):
sugar scrub.
It was the only thing I couldthink of to get this waxiness
off of him and his feet alwaysstunk.
After I washed him, his feetstill stunk.
He's just really gross.
But he loved the bathing.
He loved it.
He felt pampered and I wouldclean his ears out.
He was really good.
I always made sure my q-tip waswarm and wet and squeezed out.
He stood really still and hewas just so good I could brush
his hair and wash his face andwash behind his ears and clean
(12:07):
his ears out, cut his nails andeverything.
And his dad had me trying to cuthis nails in the middle of the
night while he was sleeping.
That was when he was like sixand I was terrified and I didn't
understand why we had to dothis, why, why, when he's
sleeping, why do I have to haveall the stress of not waking him
up during cutting his nails?
What in the hell is going on?
(12:28):
But it was just his dad.
His dad just was terrified thathe wasn't going to like it
because his dad doesn't like it.
So it turns out when I starteddoing things my way, everything
was fine.
He didn't mind getting hisnails done, you know, and it's
just a necessary thing.
But he loved everything that Idid for him during our spa days
and that was three days a week.
(12:48):
He just loved it.
You could see when I would washhis face as soon as my hand
touched his cheek and wouldstart going in a little circle.
He would just nestle right intothat and close his eyes and
smile.
You know, he just he loved thewhole experience.
And then I introduced this brownsugar scrub and it was just,
you know, brown sugar and alittle bit of oil, and he loves
(13:09):
and hates that.
I didn't know.
You know, with hissensitivities, and you never
know how it's going to affecthim, right?
I told him, I showed him thewaxiness on his like, in between
his toes and just everywhere.
He just had this waxy cheesestuff, I don't know.
It was just disgusting.
So I couldn't get it off Inbetween his ears and his toes,
having all this wax behind him.
The rest of him was just deadskin all the time, more and more
(13:30):
and more and more.
Just regular poofy washingDidn't exfoliate it enough.
He just always had this dryskin.
So enter the brown sugar.
So I would start doing thesebrown sugar scrubs every week.
He really is floored by thesensation and every time I start
using brown sugar scrub on himhe'll go whoa, his eyes get real
(13:52):
big and he starts laughing andit's just.
It's actually kind of fun tospa him because he's so reactive
, you know.
But I did agree with my friendthat maybe it would be nice if
he would do more for himself.
You know, at 10 or 11 years oldI don't think that's
unreasonable.
So we had a clear shower curtainI may have told you this a
(14:13):
see-through, clear showercurtain liner.
I would close it and I wouldload up his poofy with soap and
then give it to him all sudsedup, close the curtain and stand
on the other side of the curtainand kind of do a monkey, see
monkey do so.
I would raise my left arm andhave an imaginary poof in my
hand and show him that I wantthat poof in the armpit and then
(14:34):
I would do up and down the arm.
It was kind of fun.
He was okay at it, but he hadfun doing what I was doing in
motions, without words.
He really enjoyed that.
That was how I tried to teachhim to bathe himself and this
went on for many years.
He will not, cannot do it on hisown Even right now.
If I don't do it or his daddoesn't do it for him, he just
(14:56):
doesn't get scrubbed, he'll justsit there and he has all the
tools.
I bought him a nice big puffwith a wooden handle.
I mean it's huge and there'sjust no way you can screw it up.
But he won't do it.
So it is kind of aggravating.
But that was one thing that Ihad been working on with him.
The other thing I had startedin the temporary house was yoga
and yoga, breathing and water.
(15:18):
I had him convinced that watercured headaches.
He started saying things likeyou know, when I took him to the
new school and we had to gocheck in with everybody and meet
the teacher and all that stuff,his dad was working and I just
ran him in there and we did thething.
And as soon as we pulled up andstarted to get out of the car,
he says oh, I headache.
I'm like, oh, yeah, okay, here,drink this water.
(15:39):
And I just gave him my waterand he never complained again.
I was like, wow, that's magic.
So then every time he wouldcomplain, this was his thing,
like during a new transition ora new threshold or you know a
new activity, anything gettingout of the car and going into
another area, things like thathe would just, oh, I headache, I
(15:59):
headache.
I'm like, oh, here you go, havesome water.
I don't know if he knows what aheadache is.
I think he does now, but backthen I don't even know if he
knew, but that's what he wouldsay and that's what I would do
and everything worked out fineand he never had a headache
after drinking the water.
So he became very dependent onwater and I just figure maybe
it's like a nervous tick orsomething right With the yoga
breathing.
He has always loved me workingout.
(16:22):
I used to work out in hisbedroom in the townhouse because
he had the only DVD player.
He had an Xbox and I used a DVD.
So I would go in his roomalmost every day at night and
get these exercises done and heloved it because during the
floor work it was abs and thelady at one point in the workout
(16:42):
would say something like yeah,baby, right there in those
obliques, and she would tap onher obliques and he just thought
that was hilarious and he wouldsit there and wait for the
whole workout until she saidthat and he would go, oh, and he
would tap my obliques and hejust got so excited about that.
So he was very tolerant of meworking out in his room and
(17:02):
taking up some of his time.
It was only a 20 minute workout, but I thought that was really
nice of him to allow me to do it.
When we lived in the temporaryhouse he was with me like all
the time, so every once in awhile he would sit with me while
I was trying to do some yogaand I thought, well, this is
cool, I'm going to put him towork.
This is really good for him,because he actually is man.
He's kind of a hunchback andI'm really worried about it.
(17:24):
We're trying to get itcorrected, but he won't do
anything to help himself.
So at the time I was like let'sget him some yoga, and that was
probably one of the worstexperiences trying to get him
involved in yoga.
He was very, he's very rigidand he's very like his bones.
I started to feel like hisbones were just steel, like he's
(17:47):
just he's made of metal andhe's very hard to move and I
tried like hell to get him to,you know, bend over, and I mean
he just he can't even touch theground.
He can't touch his toes andhe's very thin.
He just he doesn't bend.
And it was really hard.
I really wanted him to do yoga,especially when I saw the way
(18:09):
that his body was reacting.
It was very resistant and I wasreally trying hard.
But what I got him to do wasbreathe and that's about the
only thing he ended up beingable to do and I couldn't work
with him anymore.
I was so frustrated with himevery single time I tried to get
him to just bend over.
I couldn't get him to do a damnthing.
(18:30):
He was just, if you could Idon't know how can you be a
piece of steel and a wet noodleat the same time, but that's him
, if you can picture that.
I don't know it.
Just you can't do it.
I can't.
I can't work with himphysically, like on, you know,
physical education, gym thingslike that.
I just can't do it.
But I did get him to breathe.
(18:51):
He's a very shallow breather.
He doesn't understand what itis he does.
He's starting to do it betternow, but this has been years.
I mean he is about to be 24 andthis is when he was 12.
I was working on this, you know.
So we're always telling himtake yoga breaths, take yoga
breaths, and he will try, andthat's very nice, especially
(19:12):
lately with his meltdowns andeverything, no matter what,
every stressful situation thathas come up since I taught him
yoga breathing.
All I have to say is yogabreath, yoga breathing, yoga
breathing, yoga breath, and hewill instantly stop and close
his eyes.
It's funny because he doesn'tactually inhale most of the time
(19:32):
.
He's starting to now, but hewill stop and close his eyes and
slouch and then raise his headand his eyebrows up and then go
back down into a slouch and thenraise his head and his eyebrows
up and then go back down into aslouch and then he'll go.
He'll breathe out like a half asecond after a couple of those
(19:53):
I don't know whatever, but itworks for him.
He thinks that that's whatyou're supposed to do and he
thinks that it's supposed torelax you to do it.
So at least he's trying.
And he would get stressed out atschool and I would tell him
yoga breath and I put, put thatin the notebook how to take care
of him.
Yoga breath, yoga breath.
And everyone was really amazedthat this would calm him down
because he doesn't actuallybreathe during the yoga
(20:16):
breathing Whatever it takes, kidyou know.
But also, we had not yetexplored medication for him.
We really were both against it.
Medication for him we reallywere both against it.
We didn't want to introducepharmaceuticals into his still
developing brain and body and wefelt that he was too young.
And I know a lot of you outthere are doing the same thing
(20:37):
and I would do it over again thesame way.
I don't think that we made amistake on that.
It was hard at times, it wasvery difficult and we did have
fights with school, faculty andstuff about it.
But I geez, you know, he'sreally his mental state.
He's just, he's really smart,but he's really dense and it
just depends, I don't know.
But I'm just, I'm glad that hedid not have the pharmaceuticals
(21:01):
, because there are so manystudies that show that they have
an ill effect on everything asthey're growing up.
I mean, you're talking aboutyour body, your organs,
everything.
We did not want to explorepharmaceuticals for another
handful of years, so we wereusing more holistic methods diet
, exercise, breathing techniques.
(21:21):
We also started to incorporatewhispering.
We would bring him out into thewoods because we had all that
land and get him all camouflagedup, because he's a huge fan of
Primetime Bucks, which is ahunting show.
He'll watch the DVDs over andover again and he makes the
little sounds for the deer andeverything.
It's really cute.
He loves it and that's probablyone of his fondest memories
(21:43):
from growing up in this house,because everyone's a hunter here
and we would take him out intothe woods and work on our
hunting voices.
So now instead of inside voicesit's hunting voices, and he
understands that he doesn't careabout your inside voice.
But if you say hunting voices,if he's feeling cooperative,
he'll start whispering.
He does tend to talk morenonsense in a whisper, so it,
(22:05):
you know, kind of defeats thepurpose.
But at least he's trying tocontrol his volume, which you
may already know is verydifficult to convey to him.
Otherwise he's just super loud.
Probably your kid too.
You know a lot of them.
They just don't have any kindof filter, whether it's attitude
, behavior, words or noise level.
So he's just a wild card justout there yelling at everybody.
(22:29):
So all of those things came inhandy during our first couple of
holiday get-togethers at ournew house.
Believe it or not, that's whenI started to see like the
culmination of my efforts withhim and dad's efforts with him,
start to show that they actuallycalm him and I started to
(22:49):
understand that, even though hedoesn't always go along with the
program, with the things we'retrying to teach him, and he's
not going to think of it on hisown most of the time, the
biggest benefit to him is thathe seems to attach a feeling to
these lessons and it's thefeeling that gets him through
(23:11):
the next hard time.
He is actually starting to tellhimself when to take yoga
breaths now because he knows,like we have just laid down the
law, you do it one more time andyou're grounded, or something
like that.
He'll go and sit down and makea big show of it.
You know, okay, okay, oh, yogabreath, you know and he'll.
I think he's doing it more forshow, to show us that he wants
(23:34):
us to think that he's trying.
But every once in a whileyou'll watch him and you'll see
that it's actually working andhe's kind of getting into it and
concentrating on his breath andhe has learned to breathe a
little deeper.
After 12 years of us teachinghim, I think he feels some sort
of almost the same warmth that Ifeel when I think of my family
(23:54):
traditions of having a couplecocktails and decorating the
tree, and that takes me back tomy grandma's house with my uncle
and my mom and all thewonderful smells and the awesome
nuts and the nutcrackers andall the you know the high balls
that were going, mom, and allthe wonderful smells and the
awesome nuts and the nutcrackersand all the you know the high
balls that were going around andall that stuff.
That is a memory for me that'striggered and I think that that
(24:17):
effect is the same effect thatJacob gets when he starts to
incorporate some of thesetechniques that we have used
with him as a family to help himlearn to relax.
I really think that, if doneunder the right circumstances,
we can create what they callneural pathways.
Usually those are done bywriting things down, but you can
(24:40):
create like a neural pathway ina sense, I guess, where just
the mere suggestion of anactivity will have an emotional
nervous system effect on him andhelp.
So I think maybe that'll helpsomebody out there.
I think that there's reallysomething to that.
For instance, if you're intoessential oils, you can know
(25:02):
that well, this lavender oil issupposed to help you relax.
So I think that I see that youneed to relax and I'm going to
ask you to smell this lavenderoil.
Well, that's not necessarilythe best way to introduce that
calming oil to a person ifthey're already upset, because
when someone is experiencing afeeling or an emotion or an
(25:24):
event, then they attach thatfeeling, that emotion and that
event to the very next thingthat they encounter.
So if you're having a meltdownand in the middle of a meltdown
I say, hey, smell this beautifulflower.
Well, the next time you smellthat beautiful flower, there's a
really, really good chance thatyou're going to feel exactly
(25:47):
the way you felt during thatmeltdown at the time when I had
you smell that flower.
And now a perfectly goodcalming object is working
against you.
It's not going to calm you down, it's going to put you into a
tizzy and you may not evenunderstand why, but you're just
going to feel sick or you'regoing to feel whatever it was
(26:07):
that you were feeling at thetime that you smelled that smell
in the first place.
The same applies to a calmingtechnique that doesn't have an
olfactory sense attached to it.
So if I'm like, hey, let's dosome yoga breathing right in the
middle of a meltdown and that'sthe first time that he's ever
heard of yoga breathing.
Well, the next time I ask himto do yoga breathing, I'm
(26:32):
basically just asking him tohave a meltdown.
So I think that if you'recareful about how you use your
techniques, it can definitelyhave a good effect, just because
of the bond that they may feelthey've developed with you
during the part where theylearned it from you.
So hopefully that makes sense.
But I think it's apsychological thing there that
you can tap into and it helps.
We just used the yoga breathingthe other day.
We've been having some reallyhard days with him lately and I
(26:55):
don't know, I just man, I reallyI hate to mess with his meds,
but I think we're going to haveto.
There's just something wrong.
He's okay today, but he'shaving more bad days than good
and I'm not sure.
I don't know.
I don't know what's going on.
Maybe it was because there wassnow coming and I mean he's so
if the wind blows a little toohard, he is just a psycho and
(27:18):
very dangerous and I just Ithink that he could try to
control himself a little bitmore.
I think it's really out of hand.
I know he's special, I get it,you know, but a little bit of
try.
I would love to just see alittle bit of try.
Just because he's specialdoesn't mean he can't try to
control himself.
A lot of this stuff is veryintentional.
(27:40):
He makes the choice.
It's not a blind rage meltdownwhere he doesn't even know
what's going on.
A lot of things are justchoices and we've been working
on that for years and I didn'teven think of that.
It was a teacher.
I learned in school that theywere teaching him to make good
choices and it was making adifference.
(28:01):
It was affecting him.
He was understanding that Idon't have to act this way.
I can make a choice to be angryor to be calm.
And that's where I got the idea.
I'm like oh, that, wow, Ididn't even realize, you know.
So just the other day he wasman, okay.
So just the other day he camedown here.
He was just going crazy.
I mean, these meltdowns areridiculous and I don't know why
(28:24):
they're happening.
I'm not sure what's going on,but he came down here and it's
been first thing in the morningevery day, no matter what time.
If he decides to sleep in or ifhe decides to get up early,
it's just right away and he'seven been forgetting to bring
his water glass down here to gethis medicine.
I mean, he's just been reallyoff.
He's not bringing his waterglass down at night, he's not
bringing it down in the morning.
(28:45):
He is on some kind of weirdtrip where he just can't even
remember how to function.
This is a routine.
We've been doing this for quitea while and he's not doing it
now.
It's like it's throwing him offand he's blaming us.
Like he'll come down herewithout his water glass and
we're as nice as pie.
Oh, you almost forgot yourwater glass for medicine.
You got to say it 20 timesbefore you can even get him to
(29:08):
understand that he needs to doit, and then you have to
actually order him to do itbecause he still won't respond.
This is all being nice.
We're just we're faking it.
He's faking being nice to usand we're faking being nice to
him and we're trying like hellto keep him happy.
We're just trying to mirrorwhat he's giving us but be more
positive about it.
Then, all of a sudden, the nexttime we see him, after we
(29:28):
ordered him to bring his waterdown here, he comes down, he's
cool, and then he goes away andthen he comes back and he's just
psycho.
This is what's been happeningand just the other day I was so
proud of him.
After the fact, you know, it'sjust a whirlwind of crap.
But he comes down here, he'sflapping and flapping and
flapping, and doing all thestuff and yelling and using this
death voice and making uglyfaces in the mirror, even though
(29:51):
he's cleanly shaven, whichusually the clean shave keeps
him cute and nice.
I don't know what's going on,but he's just coming down here
and being evil and he starts inand you can see the meltdown is
almost fully underway.
He runs away and he comes backdown and he just wouldn't calm
down.
He didn't give his medicine achance to work and he hasn't
been giving it a chance and heknows the drill, he knows how it
(30:13):
works and he just won't calmdown.
So I tell him to bring hiswater down and let me give him
some new medicine, and that'sthe cannabis medicine.
And he came down here and Iheard a really weird sound, one
that I've never heard, as he wascoming in and I just attributed
it to his running meltdown.
I didn't think much of itbecause there were so many more
things to think about.
(30:33):
I went upstairs and took ashower and I came back and
noticed that there's a bigpuddle of water on the floor in
my hallway and I mentioned it tohis dad and we decided, oh, it
must be from when he came downhere and there was that weird
noise and he had a full glass ofwater and he did seem a little
skitzed out about his entry in,so maybe that was it.
Before I even had my hair fullybrushed, he came down here and
(30:57):
he was fine, he was allmedicated and he tried to like
be around us for a minute and wetried to ask him a question and
he said, oh, da, da, da, da, da, okay.
And basically he was sayinghe'll be right back, he's going
upstairs, okay.
And we said okay.
So he came back right away witha paper towel and I wasn't even
paying attention to him.
I was in the other room and hecame in and he's like I got this
(31:19):
.
I got this, you know, and itwas a wet paper towel.
I was like where'd you get that?
He just was like and I was likeoh, I knew, I knew he cleaned
up the puddle that he knew hemade and we hadn't even said
anything to him at all about it.
He wasn't in the room when Imentioned it to his dad a few
minutes beforehand, so I was soimpressed.
I mean, that's how things stickwith him.
(31:40):
If he takes a nap, you have toremove his shoes and his clothes
from his bedroom or he won't beable to rest.
And don't leave them in thereovernight for damn sure, because
he won't sleep all night.
He left some underwear in thebathroom a few weeks ago and he
didn't.
He hardly slept all night andhe was so worried about the
underwear, you know.
So he's just like that andhe'll obsess over it.
He had that water thing.
(32:01):
It bothered him enough to where, after he had the medicine and
he did his own yoga breathing,which I just told you about that
was the other day.
He initiated that on his own.
He waited until he felt better.
The very first thing he did wascome and clean up that puddle
that he knew he made.
Man.
I was so proud of him.
I thought that was awesome.
That's my new.
I'm thankful for that.
(32:22):
This week, thanksgiving is justin a couple days.
By the time you hear thisepisode, I think Thanksgiving's
going to be tomorrow.
So if there's anything cutethat's happening, try to hang on
to it and make it your.
I'm thankful for this thing.
In my next episode I'm going tocontinue the story about what
happened during that first yearof school.
I do want to just give you aquick preview.
All that showering himself andmonkey see monkey do and
(32:45):
teaching him to be moreself-reliant, and all of that
jazz just went out the windowbecause he ended up being so
unhappy during the time that wewere trying to figure out what
was going on with the schoolthat I actually just started
bathing him as a courtesy togive him some sort of pampering
(33:05):
and good feelings.
It was the only thing I knewthat he still would respond
positively to, and I knew thathe felt pampered and he felt
special and just the way that hewould love it when I would
touch his little cheek and allthat stuff, and I knew that that
put him in a certain state ofjust bliss.
I bathed him, I think four tofive times a week at that point
(33:27):
because his life was just sohard and I didn't know what else
could make him feel good.
So I just gave up on the wholebathe yourself thing because the
school was just.
It was just.
Everything was terrible.
So more on that in the nextepisode.
I'm wrapping up the questions.
If you get them in by Friday byBlack Friday, I suppose, is the
(33:50):
date If you get your questionsinto the email,
contactparentingsevereautism atgmailcom, these are questions
for dad.
That's the deadline.
I'll be running that interviewwith his dad pretty soon.
I've been wondering howeveryone is doing out there with
the holidays.
Holiday time was always hard forme, even before all everything
(34:11):
I just told you.
You know, the no school partreally screwed everything up for
me because he had I think it'sthe echolalia.
I just couldn't stand it.
I hadn't been around kids thatmuch in like forever, ever,
probably ever in my life.
And now I have this kid everyday who, at seven, eight, nine
years old, is running aroundjust babbling bullshit all day
(34:32):
long, I mean nonstop, you know,and I want him to exercise his
voice, I want to see ifsomething good will come of it.
But damn, oh geez.
You know it's rough.
And that was before he wasvisibly affected by the change
in routine.
He seemed to be a lot moreflexible when he was younger but
you know, thank God he wasn'texperiencing more distress from
(34:56):
not going to school, on top ofthe echolalia and everything
that he is.
Naturally, I just I was having areally hard time with that.
I never felt like I ever got abreak or a chance to relax or
anything.
I hope you have a place whereyou can go and take a few
breaths.
You know it's almost over.
I mean not really.
You still got another monthuntil you know Christmas and New
(35:18):
Year's, but then after that youknow you're done until spring
break.
So, man, stand your ground whenyou have to.
During this time you hang inthere.
You're a superhero.
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your Sh.
, .
I'm so happy that you're herewith me today.
For more information about eachof these episodes, you can head
on over to psabuzzsproutcom,where you'll find the transcript
, show notes, contact, email,social media page, coupon codes
(00:41):
and merch, as well as a link tosupport the show where you can
just buy me a coffee for aslittle as $1, and a portion of
the proceeds from that programand from any merch sold will go
towards helping other severeautism families in need who may
not be able to afford thesensory items, therapy items or
(01:04):
specialty foods for their lovedone.
Well, apparently it's almostThanksgiving and I have been
reminiscing about our pastholidays.
There was a time when we wereable to enjoy our holidays as a
family, largely because Jacobstill enjoyed things.
We didn't force him into a lotof Halloween because he never
really enjoyed Halloween.
(01:26):
My very first Halloween withthem, we got all done up and he
was Spider-Man and we wentaround the neighborhood.
We got about five houses downand he was already crying and
you know, it was just a lot ofattention.
Everyone always thinks he'scute anyway, and I don't know if
it's because he was cold andcute or.
.
.
it was just too much, but wherehe would normally thrive on all
(01:46):
the attention, with everyonesaying how cute he is, he broke
down.
It was just too much.
I guess by the time we got himback home he just had a snotty
face and he was just notenjoying Halloween.
With Thanksgiving and Christmas, that always seemed like fun.
I always learned a lot about ourson during the holidays because
of all the different familythat we used to have to go see.
(02:09):
We went to one of my spouse'saunt's houses she was hosting
that year.
I learned the types of foodthat he doesn't like.
The biggest thing was he didnot like mashed potatoes.
They had a huge buffet of foodand we put everything on his
plate and he was so pissed offthat there were these mashed
potatoes on his plate.
He didn't want anything to dowith them.
He didn't mind if the foodswere touching or anything like
(02:32):
that.
He just hated the mashedpotatoes.
I think he didn't like thetexture.
I remembered that forever andever and I always told my spouse
hey look, don't give him mashedpotatoes, because it really did
upset him and if you're tryingto have a good time, that's the
last thing you want to do, right?
So we try to just keep it tothings that he likes.
He likes loud flavors like sourapple and pickles and you know
(02:52):
just loud things like that.
I tried to carry my holidaytraditions from my family into
this family, so what we alwaysdid was we would have
Thanksgiving dinner and then wewould have a few cocktails and
decorate the tree, and the firstcouple of years it was just the
three of us and our neighborscame over and hung out and we
have the cutest little pictures.
(03:13):
They actually were pretty goodbuddies.
After that initial scare thathe gave her when he barged into
their house for no reason.
They were really cute hangingout together.
She was significantly youngerand that's just the way Jacob
needs his peers to be eithersignificantly older or
significantly younger, not somuch into peers his own age.
(03:34):
So that was really cute and fun.
And during those years there wasa thing that we didn't realize,
so I want to get this out incase any of you are in this
situation.
We could not get Jacob'ssupplemental security disability
income because he was found tobe qualified for it and he would
receive it, and then they wouldfind that his dad made too much
(03:56):
money in the business.
Even after we got incorporatedfrom a sole proprietorship to an
S-Corp, we still couldn't getthe money, and it turned out
that the accountant we wereusing had not been accounting
for him.
So later on we did get a lot ofmoney back.
But disability income, which isthe federal income, does depend
(04:19):
on the parent's income, whetherhe gets it or not and how much
he gets.
He was receiving it and thenthey decided that we made was
receiving it, and then theydecided that we made too much
money and then they decided thathe should have to pay the money
back.
That made Christmas reallydifficult.
We were really happy when wemoved into the home that I have
been telling you about on allthat land, because it was a big
(04:40):
kitchen, big enough house tohost everybody and it had a good
draw.
The nature, all that land andall the beauty made everyone in
the family want to come up there, and it was about an eight-hour
drive, so we were very grateful.
We had a ball on our gettingready for our first Thanksgiving
in this new house, even thoughthere was some friction with
(05:02):
school and we still couldn'tfigure out what was going on
there.
We were able to just removeourselves from the situation and
enjoy the holidays with ourfamily.
What I really started to noticeduring these holidays was how
well my son knows me, and itmade me laugh so hard.
Everyone who didn't live withus thought I was crazy and they
(05:23):
looked at me like they thought Iwas I don't know like maybe I
needed some medical attention.
It was a weird thing and if youhave this connection with your
child then you probablyunderstand.
When they do something ormurmur something about you or
your behavior, there is kind ofan inside thing between the two
of you.
Everyone outside of it theylook at you like you're crazy,
(05:45):
right?
Anyway, we're all sitting atthe table and I had been working
with Jacob on some things.
One was that he didn't have toeat everything all at once and
he didn't have to throw it inthe garbage if he didn't eat it
all at once.
There was something calledsaving it for later.
I could tell that he was nothaving a good time with his food
anymore.
He had way more than he shouldhave on his plate as usual on
(06:08):
the holidays, everybody doesthat but I could tell that he
was done, but he was stilleating, so I kept trying to
convince him that if he stoppedeating it would be okay and we
could save it for later.
So I'm like, okay, are you allfull?
Are you full?
Do you want to stop eating?
And I can put it away.
Save it for later.
And that was the only phrasethat would get him to do it.
(06:28):
I had to go through all theconniptions of all the different
words, but save it for later isthe phrase that he will lock in
on and agree to.
And it had gone on for quite awhile before he agreed.
And we kind of had theattention of the family.
While, you know, while theywere sitting at the table,
everyone was in their ownconversations, but they also
knew that he and I were having athing here.
And finally he's like, yes,okay.
(06:50):
And he starts to kind of removehimself from the table as I
start to take his plate and getready to put it in a dish for
later.
And he has this way of talking.
Well, he used to.
He likes to do the movienarration voices where it's like
real deep and he'll talk realslow, out of the blue.
You hear him say 20 years laterI laughed so hard I had tears
(07:16):
streaming down my face and noone understood why that was
funny.
Well, first, that was reallycute.
I mean, where did that comefrom?
Right, I've never heard him saythat and that was so many words
all at once, and I was reallyjust tickled about the whole
thing.
But it really made me realizewhat he thinks of me.
And he was so right because Iwas so busy, you know, and I was
(07:38):
always just juggling a milliondifferent things, and I really
think that he felt that way,like, yeah, okay, you'll save it
for later, I'll see it in 20years.
Thanks, mom.
You know, this is because, like, if he ripped his pants or he
popped a button off his pants,then I was gonna, you know, I
had every intention of sewingthat button back on.
(07:59):
It didn't take 20 years, but it, you know, it might take a
while.
I thought that was hilariousand that was probably my fondest
memory of the holidays at ourhouse.
I remember that afterThanksgiving dinner, his grandma
wanted to have him help hershop, and this is a really unfun
way to do it, but this is theway she insists on doing it with
(08:23):
everybody.
Okay, so her thing is sheeither wants to take you to the
store and ask you what you likeand then get that for you right
in front of you.
Or she likes to have you lookthrough the website or a
magazine or something and tellher what you like and what you
want and then she'll get it foryou.
And yes, those are gifts, butyou know the kind that get
(08:44):
wrapped up and are surprises.
She likes to act like they'restill surprises.
So she sat down with our son atthe table and put his iPad to
good use.
I never even thought aboutusing the iPad to shop.
I just used it for hisentertainment.
So that was cute.
But yeah, she sat down with himprobably for I don't know, I
(09:05):
swear it was a couple of hoursand she just had him on.
Like GameStop and whateverother online stores, you can
look at video games and moviesand pick out everything that he
wanted.
So they had a little specialtime together.
I didn't see any harm in it atthe time.
Later on I grew to understandthat this was an issue, but it
(09:28):
was really cute.
It didn't last long.
We did have a few and he alwaysdecorated the tree with me.
It was great fun.
It drove me absolutely nutsbecause he would put all the
ornaments in one little spot onthe tree.
You know, I had to praise himand tell him how good it was and
try to use the power ofpositive suggestion to show him
that we kind of want themdistributed.
(09:49):
But he insisted on putting themin this little spot every year
so he would go to bed and Iwould go and change them all
around and he didn't seem tomind after that.
I was just happy that he wasdecorating.
He would make little ornamentsat school and bring those home,
so we've always saved those andit was a fun time for a while.
As I mentioned in my hindsightepisode, there are certain
(10:12):
things that seem better when hewas younger, and that was one of
them.
I have a couple things I hadbeen working on with him since
the townhouse.
Okay, so we were there fromwhen he was younger, and that
was one of them.
I have a couple things I hadbeen working on with him since
the townhouse.
Okay, so we were there fromwhen he was about seven years
old to 11, eight, nine, 10.
Yeah, seven years old to 11years old.
I think during that 10 and 11year mark I had been trying to
(10:34):
teach him to bathe himself alittle bit, because my neighbor
didn't understand autism at thetime, and neither did I.
She learned that I had to bathehim.
I threw him in the bath everyother day, so three times a week
or so.
I was giving him a bath.
I got to do everything.
She was like, well, how old ishe?
You shouldn't be having tobathe him at this age.
(10:56):
And I was like, well, you know,it's hard to explain, I guess,
but really he doesn't.
I don't know if it's that hecan't or that he won't, I think
it's both.
Because he's perfectly able touse his hands, but when you give
him something in his hand andask him to use it to wipe
himself or a plate or a windowor a table or anything, his hand
(11:17):
is like a wet noodle and it'sjust completely ineffective and
it's really annoying.
That was one of the reasons thatI had to bathe him, because I
tried to get him to do it, buthe's just so floppy and useless
and I just was like I don't havetime for this, I need to get
this done.
I don't want to do this allnight, but he was so waxy, by
the way, and he still is, so Iwould always make this brown
(11:45):
sugar scrub.
It was the only thing I couldthink of to get this waxiness
off of him and his feet alwaysstunk.
After I washed him, his feetstill stunk.
He's just really gross.
But he loved the bathing.
He loved it.
He felt pampered and I wouldclean his ears out.
He was really good.
I always made sure my q-tip waswarm and wet and squeezed out.
He stood really still and hewas just so good I could brush
his hair and wash his face andwash behind his ears and clean
(12:07):
his ears out, cut his nails andeverything.
And his dad had me trying to cuthis nails in the middle of the
night while he was sleeping.
That was when he was like sixand I was terrified and I didn't
understand why we had to dothis, why, why, when he's
sleeping, why do I have to haveall the stress of not waking him
up during cutting his nails?
What in the hell is going on?
(12:28):
But it was just his dad.
His dad just was terrified thathe wasn't going to like it
because his dad doesn't like it.
So it turns out when I starteddoing things my way, everything
was fine.
He didn't mind getting hisnails done, you know, and it's
just a necessary thing.
But he loved everything that Idid for him during our spa days
and that was three days a week.
(12:48):
He just loved it.
You could see when I would washhis face as soon as my hand
touched his cheek and wouldstart going in a little circle.
He would just nestle right intothat and close his eyes and
smile.
You know, he just he loved thewhole experience.
And then I introduced this brownsugar scrub and it was just,
you know, brown sugar and alittle bit of oil, and he loves
(13:09):
and hates that.
I didn't know.
You know, with hissensitivities, and you never
know how it's going to affecthim, right?
I told him, I showed him thewaxiness on his like, in between
his toes and just everywhere.
He just had this waxy cheesestuff, I don't know.
It was just disgusting.
So I couldn't get it off Inbetween his ears and his toes,
having all this wax behind him.
The rest of him was just deadskin all the time, more and more
(13:30):
and more and more.
Just regular poofy washingDidn't exfoliate it enough.
He just always had this dryskin.
So enter the brown sugar.
So I would start doing thesebrown sugar scrubs every week.
He really is floored by thesensation and every time I start
using brown sugar scrub on himhe'll go whoa, his eyes get real
(13:52):
big and he starts laughing andit's just.
It's actually kind of fun tospa him because he's so reactive
, you know.
But I did agree with my friendthat maybe it would be nice if
he would do more for himself.
You know, at 10 or 11 years oldI don't think that's
unreasonable.
So we had a clear shower curtainI may have told you this a
(14:13):
see-through, clear showercurtain liner.
I would close it and I wouldload up his poofy with soap and
then give it to him all sudsedup, close the curtain and stand
on the other side of the curtainand kind of do a monkey, see
monkey do so.
I would raise my left arm andhave an imaginary poof in my
hand and show him that I wantthat poof in the armpit and then
(14:34):
I would do up and down the arm.
It was kind of fun.
He was okay at it, but he hadfun doing what I was doing in
motions, without words.
He really enjoyed that.
That was how I tried to teachhim to bathe himself and this
went on for many years.
He will not, cannot do it on hisown Even right now.
If I don't do it or his daddoesn't do it for him, he just
(14:56):
doesn't get scrubbed, he'll justsit there and he has all the
tools.
I bought him a nice big puffwith a wooden handle.
I mean it's huge and there'sjust no way you can screw it up.
But he won't do it.
So it is kind of aggravating.
But that was one thing that Ihad been working on with him.
The other thing I had startedin the temporary house was yoga
and yoga, breathing and water.
(15:18):
I had him convinced that watercured headaches.
He started saying things likeyou know, when I took him to the
new school and we had to gocheck in with everybody and meet
the teacher and all that stuff,his dad was working and I just
ran him in there and we did thething.
And as soon as we pulled up andstarted to get out of the car,
he says oh, I headache.
I'm like, oh, yeah, okay, here,drink this water.
(15:39):
And I just gave him my waterand he never complained again.
I was like, wow, that's magic.
So then every time he wouldcomplain, this was his thing,
like during a new transition ora new threshold or you know a
new activity, anything gettingout of the car and going into
another area, things like thathe would just, oh, I headache, I
(15:59):
headache.
I'm like, oh, here you go, havesome water.
I don't know if he knows what aheadache is.
I think he does now, but backthen I don't even know if he
knew, but that's what he wouldsay and that's what I would do
and everything worked out fineand he never had a headache
after drinking the water.
So he became very dependent onwater and I just figure maybe
it's like a nervous tick orsomething right With the yoga
breathing.
He has always loved me workingout.
(16:22):
I used to work out in hisbedroom in the townhouse because
he had the only DVD player.
He had an Xbox and I used a DVD.
So I would go in his roomalmost every day at night and
get these exercises done and heloved it because during the
floor work it was abs and thelady at one point in the workout
(16:42):
would say something like yeah,baby, right there in those
obliques, and she would tap onher obliques and he just thought
that was hilarious and he wouldsit there and wait for the
whole workout until she saidthat and he would go, oh, and he
would tap my obliques and hejust got so excited about that.
So he was very tolerant of meworking out in his room and
(17:02):
taking up some of his time.
It was only a 20 minute workout, but I thought that was really
nice of him to allow me to do it.
When we lived in the temporaryhouse he was with me like all
the time, so every once in awhile he would sit with me while
I was trying to do some yogaand I thought, well, this is
cool, I'm going to put him towork.
This is really good for him,because he actually is man.
He's kind of a hunchback andI'm really worried about it.
(17:24):
We're trying to get itcorrected, but he won't do
anything to help himself.
So at the time I was like let'sget him some yoga, and that was
probably one of the worstexperiences trying to get him
involved in yoga.
He was very, he's very rigidand he's very like his bones.
I started to feel like hisbones were just steel, like he's
(17:47):
just he's made of metal andhe's very hard to move and I
tried like hell to get him to,you know, bend over, and I mean
he just he can't even touch theground.
He can't touch his toes andhe's very thin.
He just he doesn't bend.
And it was really hard.
I really wanted him to do yoga,especially when I saw the way
(18:09):
that his body was reacting.
It was very resistant and I wasreally trying hard.
But what I got him to do wasbreathe and that's about the
only thing he ended up beingable to do and I couldn't work
with him anymore.
I was so frustrated with himevery single time I tried to get
him to just bend over.
I couldn't get him to do a damnthing.
(18:30):
He was just, if you could Idon't know how can you be a
piece of steel and a wet noodleat the same time, but that's him
, if you can picture that.
I don't know it.
Just you can't do it.
I can't.
I can't work with himphysically, like on, you know,
physical education, gym thingslike that.
I just can't do it.
But I did get him to breathe.
(18:51):
He's a very shallow breather.
He doesn't understand what itis he does.
He's starting to do it betternow, but this has been years.
I mean he is about to be 24 andthis is when he was 12.
I was working on this, you know.
So we're always telling himtake yoga breaths, take yoga
breaths, and he will try, andthat's very nice, especially
(19:12):
lately with his meltdowns andeverything, no matter what,
every stressful situation thathas come up since I taught him
yoga breathing.
All I have to say is yogabreath, yoga breathing, yoga
breathing, yoga breath, and hewill instantly stop and close
his eyes.
It's funny because he doesn'tactually inhale most of the time
(19:32):
.
He's starting to now, but hewill stop and close his eyes and
slouch and then raise his headand his eyebrows up and then go
back down into a slouch and thenraise his head and his eyebrows
up and then go back down into aslouch and then he'll go.
He'll breathe out like a half asecond after a couple of those
(19:53):
I don't know whatever, but itworks for him.
He thinks that that's whatyou're supposed to do and he
thinks that it's supposed torelax you to do it.
So at least he's trying.
And he would get stressed out atschool and I would tell him
yoga breath and I put, put thatin the notebook how to take care
of him.
Yoga breath, yoga breath.
And everyone was really amazedthat this would calm him down
because he doesn't actuallybreathe during the yoga
(20:16):
breathing Whatever it takes, kidyou know.
But also, we had not yetexplored medication for him.
We really were both against it.
Medication for him we reallywere both against it.
We didn't want to introducepharmaceuticals into his still
developing brain and body and wefelt that he was too young.
And I know a lot of you outthere are doing the same thing
(20:37):
and I would do it over again thesame way.
I don't think that we made amistake on that.
It was hard at times, it wasvery difficult and we did have
fights with school, faculty andstuff about it.
But I geez, you know, he'sreally his mental state.
He's just, he's really smart,but he's really dense and it
just depends, I don't know.
But I'm just, I'm glad that hedid not have the pharmaceuticals
(21:01):
, because there are so manystudies that show that they have
an ill effect on everything asthey're growing up.
I mean, you're talking aboutyour body, your organs,
everything.
We did not want to explorepharmaceuticals for another
handful of years, so we wereusing more holistic methods diet
, exercise, breathing techniques.
(21:21):
We also started to incorporatewhispering.
We would bring him out into thewoods because we had all that
land and get him all camouflagedup, because he's a huge fan of
Primetime Bucks, which is ahunting show.
He'll watch the DVDs over andover again and he makes the
little sounds for the deer andeverything.
It's really cute.
He loves it and that's probablyone of his fondest memories
(21:43):
from growing up in this house,because everyone's a hunter here
and we would take him out intothe woods and work on our
hunting voices.
So now instead of inside voicesit's hunting voices, and he
understands that he doesn't careabout your inside voice.
But if you say hunting voices,if he's feeling cooperative,
he'll start whispering.
He does tend to talk morenonsense in a whisper, so it,
(22:05):
you know, kind of defeats thepurpose.
But at least he's trying tocontrol his volume, which you
may already know is verydifficult to convey to him.
Otherwise he's just super loud.
Probably your kid too.
You know a lot of them.
They just don't have any kindof filter, whether it's attitude
, behavior, words or noise level.
So he's just a wild card justout there yelling at everybody.
(22:29):
So all of those things came inhandy during our first couple of
holiday get-togethers at ournew house.
Believe it or not, that's whenI started to see like the
culmination of my efforts withhim and dad's efforts with him,
start to show that they actuallycalm him and I started to
(22:49):
understand that, even though hedoesn't always go along with the
program, with the things we'retrying to teach him, and he's
not going to think of it on hisown most of the time, the
biggest benefit to him is thathe seems to attach a feeling to
these lessons and it's thefeeling that gets him through
(23:11):
the next hard time.
He is actually starting to tellhimself when to take yoga
breaths now because he knows,like we have just laid down the
law, you do it one more time andyou're grounded, or something
like that.
He'll go and sit down and makea big show of it.
You know, okay, okay, oh, yogabreath, you know and he'll.
I think he's doing it more forshow, to show us that he wants
(23:34):
us to think that he's trying.
But every once in a whileyou'll watch him and you'll see
that it's actually working andhe's kind of getting into it and
concentrating on his breath andhe has learned to breathe a
little deeper.
After 12 years of us teachinghim, I think he feels some sort
of almost the same warmth that Ifeel when I think of my family
(23:54):
traditions of having a couplecocktails and decorating the
tree, and that takes me back tomy grandma's house with my uncle
and my mom and all thewonderful smells and the awesome
nuts and the nutcrackers andall the you know the high balls
that were going, mom, and allthe wonderful smells and the
awesome nuts and the nutcrackersand all the you know the high
balls that were going around andall that stuff.
That is a memory for me that'striggered and I think that that
(24:17):
effect is the same effect thatJacob gets when he starts to
incorporate some of thesetechniques that we have used
with him as a family to help himlearn to relax.
I really think that, if doneunder the right circumstances,
we can create what they callneural pathways.
Usually those are done bywriting things down, but you can
(24:40):
create like a neural pathway ina sense, I guess, where just
the mere suggestion of anactivity will have an emotional
nervous system effect on him andhelp.
So I think maybe that'll helpsomebody out there.
I think that there's reallysomething to that.
For instance, if you're intoessential oils, you can know
(25:02):
that well, this lavender oil issupposed to help you relax.
So I think that I see that youneed to relax and I'm going to
ask you to smell this lavenderoil.
Well, that's not necessarilythe best way to introduce that
calming oil to a person ifthey're already upset, because
when someone is experiencing afeeling or an emotion or an
(25:24):
event, then they attach thatfeeling, that emotion and that
event to the very next thingthat they encounter.
So if you're having a meltdownand in the middle of a meltdown
I say, hey, smell this beautifulflower.
Well, the next time you smellthat beautiful flower, there's a
really, really good chance thatyou're going to feel exactly
(25:47):
the way you felt during thatmeltdown at the time when I had
you smell that flower.
And now a perfectly goodcalming object is working
against you.
It's not going to calm you down, it's going to put you into a
tizzy and you may not evenunderstand why, but you're just
going to feel sick or you'regoing to feel whatever it was
(26:07):
that you were feeling at thetime that you smelled that smell
in the first place.
The same applies to a calmingtechnique that doesn't have an
olfactory sense attached to it.
So if I'm like, hey, let's dosome yoga breathing right in the
middle of a meltdown and that'sthe first time that he's ever
heard of yoga breathing.
Well, the next time I ask himto do yoga breathing, I'm
(26:32):
basically just asking him tohave a meltdown.
So I think that if you'recareful about how you use your
techniques, it can definitelyhave a good effect, just because
of the bond that they may feelthey've developed with you
during the part where theylearned it from you.
So hopefully that makes sense.
But I think it's apsychological thing there that
you can tap into and it helps.
We just used the yoga breathingthe other day.
We've been having some reallyhard days with him lately and I
(26:55):
don't know, I just man, I reallyI hate to mess with his meds,
but I think we're going to haveto.
There's just something wrong.
He's okay today, but he'shaving more bad days than good
and I'm not sure.
I don't know.
I don't know what's going on.
Maybe it was because there wassnow coming and I mean he's so
if the wind blows a little toohard, he is just a psycho and
(27:18):
very dangerous and I just Ithink that he could try to
control himself a little bitmore.
I think it's really out of hand.
I know he's special, I get it,you know, but a little bit of
try.
I would love to just see alittle bit of try.
Just because he's specialdoesn't mean he can't try to
control himself.
A lot of this stuff is veryintentional.
(27:40):
He makes the choice.
It's not a blind rage meltdownwhere he doesn't even know
what's going on.
A lot of things are justchoices and we've been working
on that for years and I didn'teven think of that.
It was a teacher.
I learned in school that theywere teaching him to make good
choices and it was making adifference.
(28:01):
It was affecting him.
He was understanding that Idon't have to act this way.
I can make a choice to be angryor to be calm.
And that's where I got the idea.
I'm like oh, that, wow, Ididn't even realize, you know.
So just the other day he wasman, okay.
So just the other day he camedown here.
He was just going crazy.
I mean, these meltdowns areridiculous and I don't know why
(28:24):
they're happening.
I'm not sure what's going on,but he came down here and it's
been first thing in the morningevery day, no matter what time.
If he decides to sleep in or ifhe decides to get up early,
it's just right away and he'seven been forgetting to bring
his water glass down here to gethis medicine.
I mean, he's just been reallyoff.
He's not bringing his waterglass down at night, he's not
bringing it down in the morning.
(28:45):
He is on some kind of weirdtrip where he just can't even
remember how to function.
This is a routine.
We've been doing this for quitea while and he's not doing it
now.
It's like it's throwing him offand he's blaming us.
Like he'll come down herewithout his water glass and
we're as nice as pie.
Oh, you almost forgot yourwater glass for medicine.
You got to say it 20 timesbefore you can even get him to
(29:08):
understand that he needs to doit, and then you have to
actually order him to do itbecause he still won't respond.
This is all being nice.
We're just we're faking it.
He's faking being nice to usand we're faking being nice to
him and we're trying like hellto keep him happy.
We're just trying to mirrorwhat he's giving us but be more
positive about it.
Then, all of a sudden, the nexttime we see him, after we
(29:28):
ordered him to bring his waterdown here, he comes down, he's
cool, and then he goes away andthen he comes back and he's just
psycho.
This is what's been happeningand just the other day I was so
proud of him.
After the fact, you know, it'sjust a whirlwind of crap.
But he comes down here, he'sflapping and flapping and
flapping, and doing all thestuff and yelling and using this
death voice and making uglyfaces in the mirror, even though
(29:51):
he's cleanly shaven, whichusually the clean shave keeps
him cute and nice.
I don't know what's going on,but he's just coming down here
and being evil and he starts inand you can see the meltdown is
almost fully underway.
He runs away and he comes backdown and he just wouldn't calm
down.
He didn't give his medicine achance to work and he hasn't
been giving it a chance and heknows the drill, he knows how it
(30:13):
works and he just won't calmdown.
So I tell him to bring hiswater down and let me give him
some new medicine, and that'sthe cannabis medicine.
And he came down here and Iheard a really weird sound, one
that I've never heard, as he wascoming in and I just attributed
it to his running meltdown.
I didn't think much of itbecause there were so many more
things to think about.
(30:33):
I went upstairs and took ashower and I came back and
noticed that there's a bigpuddle of water on the floor in
my hallway and I mentioned it tohis dad and we decided, oh, it
must be from when he came downhere and there was that weird
noise and he had a full glass ofwater and he did seem a little
skitzed out about his entry in,so maybe that was it.
Before I even had my hair fullybrushed, he came down here and
(30:57):
he was fine, he was allmedicated and he tried to like
be around us for a minute and wetried to ask him a question and
he said, oh, da, da, da, da, da, okay.
And basically he was sayinghe'll be right back, he's going
upstairs, okay.
And we said okay.
So he came back right away witha paper towel and I wasn't even
paying attention to him.
I was in the other room and hecame in and he's like I got this
(31:19):
.
I got this, you know, and itwas a wet paper towel.
I was like where'd you get that?
He just was like and I was likeoh, I knew, I knew he cleaned
up the puddle that he knew hemade and we hadn't even said
anything to him at all about it.
He wasn't in the room when Imentioned it to his dad a few
minutes beforehand, so I was soimpressed.
I mean, that's how things stickwith him.
(31:40):
If he takes a nap, you have toremove his shoes and his clothes
from his bedroom or he won't beable to rest.
And don't leave them in thereovernight for damn sure, because
he won't sleep all night.
He left some underwear in thebathroom a few weeks ago and he
didn't.
He hardly slept all night andhe was so worried about the
underwear, you know.
So he's just like that andhe'll obsess over it.
He had that water thing.
(32:01):
It bothered him enough to where, after he had the medicine and
he did his own yoga breathing,which I just told you about that
was the other day.
He initiated that on his own.
He waited until he felt better.
The very first thing he did wascome and clean up that puddle
that he knew he made.
Man.
I was so proud of him.
I thought that was awesome.
That's my new.
I'm thankful for that.
(32:22):
This week, thanksgiving is justin a couple days.
By the time you hear thisepisode, I think Thanksgiving's
going to be tomorrow.
So if there's anything cutethat's happening, try to hang on
to it and make it your.
I'm thankful for this thing.
In my next episode I'm going tocontinue the story about what
happened during that first yearof school.
I do want to just give you aquick preview.
All that showering himself andmonkey see monkey do and
(32:45):
teaching him to be moreself-reliant, and all of that
jazz just went out the windowbecause he ended up being so
unhappy during the time that wewere trying to figure out what
was going on with the schoolthat I actually just started
bathing him as a courtesy togive him some sort of pampering
(33:05):
and good feelings.
It was the only thing I knewthat he still would respond
positively to, and I knew thathe felt pampered and he felt
special and just the way that hewould love it when I would
touch his little cheek and allthat stuff, and I knew that that
put him in a certain state ofjust bliss.
I bathed him, I think four tofive times a week at that point
(33:27):
because his life was just sohard and I didn't know what else
could make him feel good.
So I just gave up on the wholebathe yourself thing because the
school was just.
It was just.
Everything was terrible.
So more on that in the nextepisode.
I'm wrapping up the questions.
If you get them in by Friday byBlack Friday, I suppose, is the
(33:50):
date If you get your questionsinto the email,
contactparentingsevereautism atgmailcom, these are questions
for dad.
That's the deadline.
I'll be running that interviewwith his dad pretty soon.
I've been wondering howeveryone is doing out there with
the holidays.
Holiday time was always hard forme, even before all everything
(34:11):
I just told you.
You know, the no school partreally screwed everything up for
me because he had I think it'sthe echolalia.
I just couldn't stand it.
I hadn't been around kids thatmuch in like forever, ever,
probably ever in my life.
And now I have this kid everyday who, at seven, eight, nine
years old, is running aroundjust babbling bullshit all day
(34:32):
long, I mean nonstop, you know,and I want him to exercise his
voice, I want to see ifsomething good will come of it.
But damn, oh geez.
You know it's rough.
And that was before he wasvisibly affected by the change
in routine.
He seemed to be a lot moreflexible when he was younger but
you know, thank God he wasn'texperiencing more distress from
(34:56):
not going to school, on top ofthe echolalia and everything
that he is.
Naturally, I just I was having areally hard time with that.
I never felt like I ever got abreak or a chance to relax or
anything.
I hope you have a place whereyou can go and take a few
breaths.
You know it's almost over.
I mean not really.
You still got another monthuntil you know Christmas and New
(35:18):
Year's, but then after that youknow you're done until spring
break.
So, man, stand your ground whenyou have to.
During this time you hang inthere.
You're a superhero.
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