November 13, 2024 • 30 mins
After years of navigating the unique challenges of raising a child with severe autism, I've amassed a treasure trove of stories and insights that I’m excited to share with you. This episode takes you on a deeply personal journey through my life as Jacob’s mom, highlighting the power of community and family in shaping his world. You'll hear about the creative ways we've fostered understanding and acceptance in his school, thanks in part to my husband’s proactive outreach in Wisconsin.
Parenting Jacob is a delicate dance of nurturing his individuality while ensuring our family dynamics remain supportive. I recount poignant moments, like the choice to prioritize Jacob's self-esteem over a less-than-flattering school picture, and the emotional aftermath of his transitions to new schools. These stories underscore the importance of routine and personal expression for Jacob, and reveal the profound impact of small adjustments and family support on his well-being.
My father plays a starring role in this narrative, serving as a pillar of advocacy and support for Jacob. His involvement ranges from medical oversight to educational advocacy, demonstrating the critical role of a family in navigating autism. As we explore these experiences, I also touch on the intriguing effect of supermoons on Jacob's behavior, offering a unique perspective for fellow parents. Stay tuned for an upcoming interview with my spouse, where we’ll dive deeper into our family's journey and strategies.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (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.
I've been looking through myrecords and I'm about a year off
.
So everything I said was maybein 2012.
It's actually 2013 and so on.
I don't know how that happened,but of course it's all a blur.
I'm sure you can understand.
(00:38):
Remember you can always supportmy podcast by donating to a
number of different things thatI have, if you're interested.
So I've got the Buy Me a Coffeeprogram, which should be
available on the donation tab onmy podcast.
You can also go to PSA shortfor Parenting Severe Autism, psa
.
buzzsproutcom, and you should beable to see all the products
(01:03):
and all the goodies that I'vegot listed there and at the
bottom of my podcast page onevery episode I've got the links
for the merchandise and allthat stuff, and you can always
just leave me a note.
I love notes, I love to knowhow you're doing and if this is
helping you or if you just needto vent, that's fine too.
You can reach me on my Facebookpage or on my podcast.
There's an option to text me, Ibelieve, which I don't know if
(01:26):
it works or not, but you canalso email me at
contactparentingsevereautism atgmailcom.
I've been having an interestingtime looking into all of this
stuff.
I know that I took all ofJacob's notebooks and put them
in a pile or in a box orsomething that says Jacob's
notebooks, specifically for thepurpose of accessing them for
(01:48):
accuracy during these episodes.
And the funniest thing is thatI cannot find them anywhere.
But I swear I'm going to findthese notebooks.
I know they're in a specialplace.
They're probably very close,but that's okay.
I've got plenty to talk about.
One thing I wanted to mentionthat might be helpful if you are
in the situation or if you'rethe kind of person that can do
(02:10):
this kind of thing.
My spouse went to the school inWisconsin that we were only at
for a year and then he went tothe next school in Wisconsin
where we lived on that big pieceof land and everything.
He went there so that he couldactually speak with the class.
He wanted to talk to the kidsin the classes that would end up
being Jacob's peers and he washoping to educate the kids about
(02:32):
our son before they met our son, so that they would understand
the importance of trying to lifthim up and make him feel helped
and appreciated and allow himto be playful and just allow him
to exist in his own way,instead of expecting him to
conform or act a specific way,because, as far as we knew,
(02:54):
there were no other kids quitelike him in the schools and we
had not yet been informed thathis autism was the severe sort.
So we were just dealing withthese things in the best way
that we could think of, and bothof us are public speakers as
far as being in sales for allthese years.
So it was no big thing.
(03:15):
He just went and talked tothese kids and it worked out
really well.
So he explained some thingsabout our son and about the way
he will respond, what he'llrespond to and what he might
need help with and all of thesetypes of things.
It worked out really wellbecause some of the kids ended
up kind of taking on the bigbrother and big sister role at
school.
(03:35):
So that was a huge blessinggetting the children acclimated
to the idea of our son beforethey actually met our son, to
the idea of our son before theyactually met our son.
Everybody loves our son, but hecan be a lot, you know, and we
just wanted to make sure thateveryone got started on the
right foot, and that was a greatthing to do, so that might help
(03:56):
you in the future.
The other thing I was off onwith timing was the amount of
time he spent with hisgrandparents.
Last episode I said he wasthere for a month and now that I
have looked through textmessages with my best friend and
all this stuff, I realized that, yes, the grandparents did
still have the pool, and that iswhy Jacob was here for actually
(04:16):
two months, believe it or not,and his symptoms had not yet
shown as anything peoplecouldn't handle.
Whether it was severe or not.
He was a good kid and as longas he had access to things that
made him happy, like a swimmingpool and pizza and good food and
love and attention, he was okay.
So we left him here for twomonths altogether so that we
(04:40):
could clean that house, get hisroom ready, get our business set
up.
We needed to get him registeredfor school.
There was just a lot to do andwe thought, well, it'll be great
for him to just visit thefamily that he misses so much,
because the siblings were herestill and the pool was here, the
mamaw was here and the papa,everyone that he loved and
(05:01):
probably missed on some level,was here.
So why not?
Let's leave him there.
We can trust the family,everything will be fine,
everyone will take care of himand he will enjoy his summer.
And then, when he gets homefrom spending June and July at
Mamaw and Papaw's, he'll spend alittle bit of time with us and
we'll get him going with school.
And you know good things right?
(05:22):
So that was the thinking.
We did get his room completelyset up, big pimpin'.
He had everything that wasawesome in his room.
He had a huge closet, so thatwas helpful in teaching him how
to put away his clothes and,given his OCD tendencies, it
worked out really well because Iput an entertainment center in
(05:43):
his closet.
So he had a shelf up above.
He had the regular hanger rodgoing across the whole closet
and then beneath the hanger rodhe had this big entertainment
center and the doors would closeperfectly.
And so the entertainment centerhad six different shelves at
tiered levels and he was able tochoose.
He and I worked together onwhere do you want your clothes?
(06:04):
So the shirts, like t-shirts,they would hang.
We put the turtlenecks on theshelf above and any other bulky
things.
Then his pants we decidedtogether would go on the main
shelf where you would normallyput a TV on an entertainment
system.
That's where his pants went.
And then on the left lower tierhe had his socks and on the
right lower tier he had hisunderwear.
And then on the left lower tierhe had his socks and on the
(06:25):
right lower tier he had hisunderwear.
And then on the bottom tier, Ithink he had like r2d2 or
something.
It was pretty cool.
Um, he had a fish tank.
He had just all kinds of coolstuff.
He enjoyed being able to choosewhere his clothing was going to
live and it lived there all thetime.
And he's not great at foldinghis clothes, but I had him fold
his clothes.
(06:45):
I would do some of them, but Ilet him do the pants, and he's
not great at folding his clothes, but I had him fold his clothes
.
I would do some of them, but Ilet him do the pants and he's
terrible at it, but he could doit.
I let him do the pants, socksand underwear and I would just
give him his clothes and hewould put them away.
He would stack them nice andneat.
And he did really.
He tried really hard.
It gave him something to focuson and it was a weekly thing, so
it was a nice bit of routine tothrow into his new routine.
(07:08):
You know he needed things andnow that we were more stable and
not living out of boxes, Iwanted to make sure that he felt
useful and that he felt like hewas in control of everything in
his room.
So that was working out reallywell.
Another thing that worked outreally well was that, well,
there were a couple thingsactually working out really well
.
Another thing that worked outreally well was that, well,
there were a couple thingsactually.
One was that there was alaundry chute on the same level,
(07:29):
on the second level of thehouse with our bedrooms, and he
loved that thing.
He always called it the scaryhole, so when his clothes were
due to be washed, I would havehim throw them down there.
I really miss having thelaundry chute, because it just
gave him something to lookforward to and also something to
fear.
He loves being scared.
He'll attach craziness toanything like the FBI warning on
(07:52):
old VHS tapes where the screenturns blue and it says FBI
warning and it's, you know,about pirating videos.
Well, for some reason heattached scary feelings to that
and he'll search for all theseyears, as long as I've known him
, to be able to search somethingon the internet.
He'll go on the internet and hewill search for FBI, blue
(08:14):
warning and that's.
He'll run around saying, oh,fbi, blue warning, blue warning,
fbi, blue warning.
That's a thing for him.
You know he also has the MGMlion that scared the shit out of
him when he was a baby and notpaying attention.
He knows that the lion roarsbut he wasn't looking at the
time that it roared one day andit really scared him and he
(08:35):
hated that, but then he loved itafter that.
So he's always looking for thelion to roar.
Recently he started searching Ithink it's Lighthouse
Productions, it's just the logofor Lighthouse Productions and
he just brought me up to the TVthe other day to show me.
Actually, he was trying to hideit from me.
I was like I don't care, watchwhat you want, what is it?
You know he's like, oh okay, heturns up Lighthouse Productions
(08:58):
and he went through all theseconniptions just to bring up the
one on YouTube that I was likewhat is that from?
And it was Army of Darkness.
They're the producers of Armyof Darkness, apparently.
So you never know, but he'salways attaching scary emotion
(09:19):
to meaningless things, otherwisemeaningless things.
Oh, the other thing that workedout really well was, while Jacob
was gone and we were gettingthe house ready, we took all of
his school pictures and hungthem up going up the stairs in
succession.
One funny thing about that isthat almost every single school
picture that he ever took itlooks like they caught him right
(09:43):
before he snapped out.
You know, and you know there'sthe, there's the meltdown, but
then there's the I don't knowlike the pre-meltdown, where it
could go.
Either way, it's just thebouncing off the walls and it
just you don't know.
He's either going to go bouncearound and be happy like Tigger
or he's going to go into a fullmeltdown.
There's that little thing, andthat look in his eye is in
(10:07):
almost every school picture thathe ever took, and it just makes
you laugh.
If you know the kid, you knowthat he is about to start some
shit, and those people werereally in for it, and they
caught him just at the righttime, and you can just imagine
what must have happened afterthat flash went off.
There was one picture inparticular, though, we put this
(10:27):
really beautiful shirt on him.
It was a beige button down, ithad a mural of wild horses
running on it, and it was justperfect for him.
The picture was the worstpicture ever.
We were so mad that they evensent that home as a possibility
and wanted us to pay for that,and it ended up not happening.
I don't know how, but we didn'thave a school picture for that
(10:50):
year.
I mean, we have it, but justawful.
Other people say, oh, youshould have kept it because it's
a piece of his history.
I'm just like I don't want himseeing himself in that state,
because if we hang that up andhe thinks that's okay and
acceptable, he loves to look athimself.
He's like a peacock.
They love to look at themselvesand they attack their
(11:10):
reflection and they do tricksfor themselves.
That's just what he does.
If he can see himself in thereflection of the glass, on the
picture that is framed and onthe wall, that's trouble,
especially if the face lookingback at him is an ugly, scary
face that he made and that wehung up in support of it.
He will absolutely blow that upout of proportion and use it
(11:33):
all the time.
So we just we could not usethat picture because of the way
that he is, but the rest of thepictures were very cute.
He loved being the center ofattention going up the stairs.
The nice thing about havingthose pictures on the wall is it
gave him a sense for decorating.
I used that every year for theholidays, when he would come
(11:55):
home from school with projectsand pictures and all of these
things.
Instead of putting them on arefrigerator or something like
that, I would allow him tochoose where we hang it.
So it was a big ritual.
Every time, no matter what itwas, if he came home with
something that he made, I wouldstop what I was doing and we
would go grab the scotch tape.
I only had to show him one timethat I wanted to hang it up and
(12:17):
he, once he realized what I wasdoing, he got so excited and
started giggling and flappingand jumping and doing all the
happy things.
So that became a ritual and Iwould allow him to choose where
do you want this one, where doyou want this one?
And he would decorate the wholehouse with all of his stuff
that he made at school and Ithink it helped him with the
whole school thing.
(12:37):
You know he always loved school, but the older he got, the more
restrictive, I guess, it got,the more conformist it got and
the less enjoyable it got.
So anything that I could do tohelp him look forward to more of
that whole thing, I wasdefinitely willing to do it.
So I wanted to tell you aboutthis first couple months of this
(12:58):
new school.
His dad went and talked to theclass.
Everything was going great, asfar as we knew, with the kids
for the first couple of weeks.
Now, when we first moved awayand went to the Northern
Illinois place, we noticed thatthe family never came to see us.
We were always coming to seethem.
You start to realize that maybenobody cares as much as you
thought they did.
So having the mamaw and papawnot interested in coming to see
(13:22):
us for almost the entire fouryears that we lived in the
Rockford area was a littledamaging.
Finally, the papaw decided tocome up and then he decided oh
wow, they pick really coolplaces to live.
I don't think I want to leave.
So he was spending a lot moretime at our place.
Towards the end of our stay hewas there more often than we
(13:43):
ever expected and then he spenta hell of a lot of time during
that one year in the firstWisconsin house and then we
weren't home with Jacob verylong in this new house before
the Papaw came, and I'm prettysure he didn't really leave the
whole time we were there.
I mean, usually he was thereand school, I believe, started
(14:04):
at the end of August up there byOctober it was usually pretty
cold and I think that the Papawcame to see us around October.
And here's the thing that Iremember Everything was not
going great, but things wentdownhill quickly for Jacob and I
couldn't figure out what waswrong with him.
But there's a lot to tell here.
(14:25):
But I just want to start offwith we totally didn't expect it
to go wrong.
We sent him to school.
His dad would drive him down tothe end of the driveway so that
he could get on the bus.
I would pick him up because hisdad was usually out at an
appointment already.
It started to happen veryregularly that he would get off
the bus.
The bus is stopped on a pavedroad and the doors open onto a
(14:46):
gravel driveway.
That ends up splitting Rightwhere the gravel driveway meets
the paved road.
He gets off the bus andinstantly collapses onto the
rocks.
And this used to be something hewould do when he was younger.
He never actually outgrew it.
We just had to really startyelling at him because he's too
big to do it now.
But he would just go, oh, andthen fall, and that was just his
(15:07):
indication that he needed alittle love, he needed a little
comforting.
And we call him Diga.
I don't know if I ever told youthat, but his flapping noises.
He usually will go digga, digga, digga, digga, digga, digga,
digga.
So everyone calls him Diga anddigga, do and diggy.
When he would collapse when hewas younger, and he would just
make that groan and fall down,someone would always say, oh,
diga's down.
(15:27):
He would say Diga's down, youknow, and sometimes he would say
Jacob's down.
We would just kind of glorifythat, pick him up and, you know,
wipe him off.
Oh, it's okay, what's thematter, you know, whatever.
Well, he starts doing this assoon as he gets off the bus, and
now we're talking about like a13 year old.
That's not okay.
And I just I was like what isthis?
I would have to get out of thetruck and go get him and say,
(15:55):
okay, dig us down and he didn'trespond the way he used to.
He was not happy.
I don't know what was going on.
It couldn't have been the samething all the time, but there
was just something wrong againand I couldn't figure it out.
So, let's say, four out of fivedays a week he would collapse
onto the gravel and this onlyhappened for a couple of weeks.
I would tell his dad, we wouldcontact the school.
They just oh, I don't know.
You know, maybe he's tired orwhatever.
You know, this is all going onand we're trying to help him
(16:19):
keep it together.
His grandfather comes to visitand probably never leave.
I think this is one of thebiggest things that sticks out
to me for the first year ofschool in that area and it's
actually nothing to do withschool at all.
It's the fact that, while wewere trying to get him
acclimated to a new livingenvironment and a new school and
new faculty and new kids, andhis papa comes to our house to
(16:43):
stay.
At the time, we were all smokers.
I've just passed my 10-yearquitting anniversary, though, so
I'm good.
Well, this house had twodifferent living rooms, and the
one that we used the most had adoor that went out to the garage
and then the garage was justright out there to the driveway,
of course.
So I came outside and I sawthat everyone was standing in a
circle kind of in the drive.
(17:03):
And as I walked up, jacob wasstanding within a foot and a
half of his grandfather, face toface, and he says something
like Peppa, and his grandfathertakes a big drag of a cigarette
and blows it right in my son'sface, right in his fucking face.
I was so pissed, I what, what,what is wrong?
What kind of person would dothat to any other person,
(17:25):
especially someone like Jake,who's completely clean?
I mean, this boy, he's spickand span.
You know, he is this boy, he'sspick and span, he is untouched
by anything bad.
You know what I mean?
I could not believe it.
I was so mad.
And then, within a week, jacobwas sick, and he was sick for a
couple months.
I think he ended up with asinus infection.
(17:46):
It ended up to be that everyyear that school would start
when he went to school.
Anyway, he would get sick.
You know, you take time off forwinter break, you go back, he
would get sick.
And then you take time off forspring break, and then you go
back and he would get sick.
I don't know.
Was it school, you know?
Was it the kids at schoolpassing germs around?
Or was it the fact that he justinhaled somebody's cigarette
(18:08):
without even asking, and he ofcourse has no idea what's good
and bad, so he just breathed itin like normal?
He just stood right there andtook it.
It's that kind of stuff rightthere that makes you know he
can't tell you, he can't defendhimself, he doesn't have the
sense to move out of the way, hedoesn't have the sense to back
away from someone who's smoking.
I mean, you constantly have totell him.
(18:28):
I always hear his grandpatelling him you're going to get
burned with the cigarette.
I want you to back away from me, get off of me.
I'm smoking.
You know he has no sense aboutanything, right, and it's just
like okay, I expect the manthat's my senior to have enough
sense about it to not do that tomy kid.
I was abhorred.
I just could not believe that hewould do that to his own
(18:49):
special needs grandson, what thefuck is wrong with that man?
So I was pissed and I waspissed at him.
Well, I've never stopped.
I've never stopped being mad athim ever since then, and it's
not just about that, it's justthat it got worse, you know.
So that was my first realexperience with a family member
disrespecting my son like thatand not caring about his health,
(19:11):
well-being or needs at allright in my face, just blatant
blah, you know, just treatinghim like a freaking ashtray.
And you know you just startwondering about.
It's hard to tell where thingsgo wrong when everywhere around
you people are wrong towardsyour child.
It's not helpful at all.
I expect family, who loved himbefore I knew him, to do better.
(19:34):
That brings me to my feelingson this constant family presence
.
His grandfather never reallydid leave.
I mean every once in a whilewhen we wanted him there on
purpose and we would invite himto stay for a specific amount of
time and do specific activitieswith our family, his wife would
call and say that she neededhim to come home for some stupid
(19:55):
reason.
But otherwise he was alwaysthere and not contributing, not
helping with our son, nothelping with groceries, not
helping with chores, just beinga dependent.
I would have to beg his wife tosend money.
He would invite himself to thestore every time we went and
just put stuff in our cart andnot pay for it.
(20:16):
And it was just those two firstyears.
We actually ran out of propane.
There was a propane shortage.
So that means it was reallyexpensive to keep my kid warm
and nobody cared.
Nobody contributed to thefirewood, nobody contributed to
buying propane, nobodycontributed to groceries.
I mean, we were just supposedto absorb all of this and have
(20:38):
extra family there as extradependents.
I just I wasn't cool with that,and I don't know if Jacob was
cool with it either, whether hewas or not.
Is it just because I was pissedoff or or was there some sort
of imbalance because it wassupposed to be the three of us,
sometimes it was four of us,sometimes it was five or six of
us, because there are that manyfamily members who love the
(21:01):
woods and think that they'rewelcome.
That interrupts the balance oflife.
You know, when I'm feeding mykid and the other people are
there expecting to eat his foodthat I made specially for him
and then starting fights with myspouse about how I am not
feeding them.
Yes, this kind of stuffhappened, and I know that Jacob
(21:22):
is not oblivious to all of it,and I just I kind of wonder if
the imbalance was detrimental tohis development during those
years, or if he just went offthe deep end by himself.
I don't know.
But I, man, I really feel likeour family didn't get a fair
shot at being a family once wewent up there.
It was supposed to be theperfect environment, with all
(21:44):
the serenity and the outdooractivity possibilities and all
of the things that were supposedto be great.
I really feel like everythingwas muted by the presence of
people who are not part of ourfamily unit, extended family.
I just I don't know, you'llnever know, but I kind of feel
(22:04):
that the constant familypresence of people who were not
there for the first four yearsof our small family life, I kind
of feel like it messed up thebalance.
It's easy to place blame I knowit's easy to blame the teachers
, it's easy to blame this busdriver, it's easy to blame the
extended family, it's easy toblame everything but the reason
(22:26):
it's so easy is because we don'tknow.
He is not capable of telling uswhat exactly the problem is, or
if there is a problem.
We are always left to ourwhat-ifs, and maybe it's this
and maybe it's that.
There are so many, so manyexamples coming up in all of my
episodes about this type ofthing, the way that people
(22:50):
disrespect Tarrant Law and theway that they disrespect our son
, and it really it just turns mystomach to think about it all.
So these episodes, you knowthey will be short as far as the
actual stories, because I justman, they make me sick.
You know, I really thought thathaving all of that land was
going to really be therapeuticfor our son because he could
(23:12):
just be himself and not worryabout stuff.
When we were in NorthernIllinois he was in the Special
Olympics a couple years in a row.
He seemed to really love thatand everyone involved really
loved him being involved.
It was a great thing.
Except it was the funniestthing because it wasn't really
that loud there, but we wereindoors and there were a lot of
(23:33):
obstacles and you know thingsfor him to do.
He actually ran through all ofthe obstacles that he could with
his hands on his ears, evengoing through little tunnels on
the floor and stuff.
He had his hands on his earsand this was before we were wise
to the fact that maybe heshould have some noise canceling
headphones, you know.
(23:53):
So I mean we were just barebones autism back then and this
was in like 2009, 2010.
And those dates are accurate,by the way.
But yeah, he wanted to do thesport but he couldn't handle the
noise which, like I said,wasn't even that bad and I felt
terrible for him.
So I thought, you know, thismight be fun.
I have tried since then multipletimes to get him involved.
(24:15):
I bought a net for volleyballand badminton, we bought the
wiffle ball thing recently, andjust so many different things.
So I tried to teach himvolleyball, tried to teach him
badminton.
He hates everything.
Every time I see him strugglewith something, I try to remove
the thing that makes it astruggle and then recreate it
for him, and he hates it.
So I don't, I don't know.
I don't know the answers tohelping him be happy and helping
(24:37):
him enjoy things.
I just don't get what it isthat I can do for him sometimes.
In my next episode, I'll talkabout what exactly was going on
when he was throwing himself inthe driveway and what we did
about it.
The other day, he wanted to havecinnamon rolls.
We have these gluten-freecinnamon rolls that we'll buy
him once in a while.
Saturday morning, he came downhere and said he was hungry.
(24:58):
As usual, his dad was like okay, I'll be up there in 10 minutes
and we'll make you some.
What do you want?
He said cinnamon rolls.
He said, okay, we'll make yousome cinnamon rolls, I'll be up
there in 10 minutes.
So in probably 15 minutes hewent to get the cinnamon rolls
and saw that Jacob had alreadyhelped himself to the cinnamon
rolls, which normally we're likeokay, cool, he's being a big
boy If it's some of thegluten-free donuts or any other
(25:21):
treats that are ready to eat.
However, these cinnamon rollswere in the freezer.
This boy goes up there, unwrapstwo frozen, solid cinnamon rolls
about the size of a littletabletop hockey puck, you know,
or smaller and ate them frozen,solid at the table.
I don't know, you know there'sa certain level of
disappointment there, like whatis wrong with you, seriously?
(25:42):
So we've been giving him alittle bit of crap ever since
then.
Every time he wants somethingto eat, we're like do you want
it frozen or do you want it warm, you know?
And now he's like I want itwarm.
So he's been purposelydisobeying me the past few days
and I don't know why.
He just he loves to do it, andthen his dad will tell him the
same thing I just told him, andusually he'll do it just to piss
(26:03):
me off, but he actually hasn'tbeen doing what his dad asked
him to do either.
If it's something that I askedhim to do, this is something
that really lets me know heloves me all the time.
Yesterday actually, I've beengoing through a hard time
personally, just in our position.
Some of us tend to do somespiritual work on ourselves and
(26:24):
I've just been kind of gettinginto that lately again and I'm
just trying to take some comfortin those types of things.
So I've been working on myselfand I've just been kind of
getting into that lately againand I'm just trying to take some
comfort in those types ofthings.
So I've been working on myselfand I've come to a place where
I'm very aware that I am theonly woman in the house.
I am constantly a captiveaudience.
I have got to pay attention tothese performances every five
(26:47):
minutes.
I'm constantly being touchedand tapped and squeezed and
kissed and it's really annoying.
I mean it's like a nervous tickwith him.
It's not that he's doing itbecause he just loves me so much
.
It's just the same as daddy,daddy, daddy, daddy, daddy,
daddy, daddy.
I love you, I love you, I loveyou, I love you.
Touch, touch, squeeze, squeeze,kiss, kiss, tap, tap.
I just, I am so tired of beinghostage to this and I hide it
(27:10):
the best I can, but every oncein a while I just I guess I
can't hide it.
And I was just taken Sunday.
I like these Sundays in thefall and winter because of
football, I actually end up witha little bit of extra quiet
time by myself in the basement.
So I was enjoying some quiettime and Jacob came in.
I was really just trying tokeep a headache at bay and wake
(27:33):
up a little bit more.
He asked me are you okay, areyou okay?
And he kept asking are you okay, are you okay?
I kept saying yeah, I'm fine,I'm fine.
And he finally asked me onelast time.
I said I'm just tired, I'm justtired Jake.
And he said, oh, I'm sorry, Iknow you're tired.
And he put his arm around meand I just thought that was
really cute and sweet.
And then I think he left mealone the rest of the day.
(27:55):
That was really nice of him.
So every once in a while he'lllet us have our time.
He waits until he can see thatwe're broken before he'll do it,
but he'll do it for each of us.
If he can see that his dadcan't take any more of him,
(28:15):
he'll leave him alone, but hehas to drive you to that point.
Then he'll give you a littlebit of love, real love.
Hey, let me back up off you fora while.
Let you have some space.
I understand.
You know I've got a bunch ofquestions lined up for my spouse
to do the daddy interview and Iwanted to know if you have any
questions for him.
So probably within the nextthree weeks, I encourage you.
This is November 11th, it's11-11 of 24.
(28:37):
If you could get your questionsin within the next week, I will
be happy to include them in aninterview with my spouse.
Again, this is just gettingdad's take on everything.
He was there for the diagnosis.
He was there for the familytraining of how to deal with the
autism.
He was the one that advocatedin the schools around here for
Jacob.
He's also the one that I callwhen weird things happen, like
(29:03):
the one time in our townhouse.
Jacob has always, alwayspinched his bean, so he always
walks around, you know, pinchinghis bean and then one day I
noticed that there was blood onhis fingers.
I had his dad look at hispee-pee and there was a hole
worn in the skin.
I mean you could see rightthrough it.
Things like that.
(29:23):
Those are dad things, so he'sthe guy for that.
So yeah, if you have anyquestions for dad, please email
me atcontactparentingsevereautism at
gmailcom.
I'm out of time for today andI've reached my emotional limit
so I have to go, but next weekI'm going to tell you some very
interesting things about thatschool.
(29:45):
By the time you hear this, itwill be coming up on a supermoon
.
Our child is horrendouslyaffected by these supermoons, so
I wish you luck during that.
It is starting on the 15th ofNovember.
You hang in there, you're asuperhero.
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your Sh.
, .
I'm so happy that you're herewith me today.
I've been looking through myrecords and I'm about a year off
.
So everything I said was maybein 2012.
It's actually 2013 and so on.
I don't know how that happened,but of course it's all a blur.
I'm sure you can understand.
(00:38):
Remember you can always supportmy podcast by donating to a
number of different things thatI have, if you're interested.
So I've got the Buy Me a Coffeeprogram, which should be
available on the donation tab onmy podcast.
You can also go to PSA shortfor Parenting Severe Autism, psa
.
buzzsproutcom, and you should beable to see all the products
(01:03):
and all the goodies that I'vegot listed there and at the
bottom of my podcast page onevery episode I've got the links
for the merchandise and allthat stuff, and you can always
just leave me a note.
I love notes, I love to knowhow you're doing and if this is
helping you or if you just needto vent, that's fine too.
You can reach me on my Facebookpage or on my podcast.
There's an option to text me, Ibelieve, which I don't know if
(01:26):
it works or not, but you canalso email me at
contactparentingsevereautism atgmailcom.
I've been having an interestingtime looking into all of this
stuff.
I know that I took all ofJacob's notebooks and put them
in a pile or in a box orsomething that says Jacob's
notebooks, specifically for thepurpose of accessing them for
(01:48):
accuracy during these episodes.
And the funniest thing is thatI cannot find them anywhere.
But I swear I'm going to findthese notebooks.
I know they're in a specialplace.
They're probably very close,but that's okay.
I've got plenty to talk about.
One thing I wanted to mentionthat might be helpful if you are
in the situation or if you'rethe kind of person that can do
(02:10):
this kind of thing.
My spouse went to the school inWisconsin that we were only at
for a year and then he went tothe next school in Wisconsin
where we lived on that big pieceof land and everything.
He went there so that he couldactually speak with the class.
He wanted to talk to the kidsin the classes that would end up
being Jacob's peers and he washoping to educate the kids about
(02:32):
our son before they met our son, so that they would understand
the importance of trying to lifthim up and make him feel helped
and appreciated and allow himto be playful and just allow him
to exist in his own way,instead of expecting him to
conform or act a specific way,because, as far as we knew,
(02:54):
there were no other kids quitelike him in the schools and we
had not yet been informed thathis autism was the severe sort.
So we were just dealing withthese things in the best way
that we could think of, and bothof us are public speakers as
far as being in sales for allthese years.
So it was no big thing.
(03:15):
He just went and talked tothese kids and it worked out
really well.
So he explained some thingsabout our son and about the way
he will respond, what he'llrespond to and what he might
need help with and all of thesetypes of things.
It worked out really wellbecause some of the kids ended
up kind of taking on the bigbrother and big sister role at
school.
(03:35):
So that was a huge blessinggetting the children acclimated
to the idea of our son beforethey actually met our son, to
the idea of our son before theyactually met our son.
Everybody loves our son, but hecan be a lot, you know, and we
just wanted to make sure thateveryone got started on the
right foot, and that was a greatthing to do, so that might help
(03:56):
you in the future.
The other thing I was off onwith timing was the amount of
time he spent with hisgrandparents.
Last episode I said he wasthere for a month and now that I
have looked through textmessages with my best friend and
all this stuff, I realized that, yes, the grandparents did
still have the pool, and that iswhy Jacob was here for actually
(04:16):
two months, believe it or not,and his symptoms had not yet
shown as anything peoplecouldn't handle.
Whether it was severe or not.
He was a good kid and as longas he had access to things that
made him happy, like a swimmingpool and pizza and good food and
love and attention, he was okay.
So we left him here for twomonths altogether so that we
(04:40):
could clean that house, get hisroom ready, get our business set
up.
We needed to get him registeredfor school.
There was just a lot to do andwe thought, well, it'll be great
for him to just visit thefamily that he misses so much,
because the siblings were herestill and the pool was here, the
mamaw was here and the papa,everyone that he loved and
(05:01):
probably missed on some level,was here.
So why not?
Let's leave him there.
We can trust the family,everything will be fine,
everyone will take care of himand he will enjoy his summer.
And then, when he gets homefrom spending June and July at
Mamaw and Papaw's, he'll spend alittle bit of time with us and
we'll get him going with school.
And you know good things right?
(05:22):
So that was the thinking.
We did get his room completelyset up, big pimpin'.
He had everything that wasawesome in his room.
He had a huge closet, so thatwas helpful in teaching him how
to put away his clothes and,given his OCD tendencies, it
worked out really well because Iput an entertainment center in
(05:43):
his closet.
So he had a shelf up above.
He had the regular hanger rodgoing across the whole closet
and then beneath the hanger rodhe had this big entertainment
center and the doors would closeperfectly.
And so the entertainment centerhad six different shelves at
tiered levels and he was able tochoose.
He and I worked together onwhere do you want your clothes?
(06:04):
So the shirts, like t-shirts,they would hang.
We put the turtlenecks on theshelf above and any other bulky
things.
Then his pants we decidedtogether would go on the main
shelf where you would normallyput a TV on an entertainment
system.
That's where his pants went.
And then on the left lower tierhe had his socks and on the
right lower tier he had hisunderwear.
And then on the left lower tierhe had his socks and on the
(06:25):
right lower tier he had hisunderwear.
And then on the bottom tier, Ithink he had like r2d2 or
something.
It was pretty cool.
Um, he had a fish tank.
He had just all kinds of coolstuff.
He enjoyed being able to choosewhere his clothing was going to
live and it lived there all thetime.
And he's not great at foldinghis clothes, but I had him fold
his clothes.
(06:45):
I would do some of them, but Ilet him do the pants, and he's
not great at folding his clothes, but I had him fold his clothes
.
I would do some of them, but Ilet him do the pants and he's
terrible at it, but he could doit.
I let him do the pants, socksand underwear and I would just
give him his clothes and hewould put them away.
He would stack them nice andneat.
And he did really.
He tried really hard.
It gave him something to focuson and it was a weekly thing, so
it was a nice bit of routine tothrow into his new routine.
(07:08):
You know he needed things andnow that we were more stable and
not living out of boxes, Iwanted to make sure that he felt
useful and that he felt like hewas in control of everything in
his room.
So that was working out reallywell.
Another thing that worked outreally well was that, well,
there were a couple thingsactually working out really well
.
Another thing that worked outreally well was that, well,
there were a couple thingsactually.
One was that there was alaundry chute on the same level,
(07:29):
on the second level of thehouse with our bedrooms, and he
loved that thing.
He always called it the scaryhole, so when his clothes were
due to be washed, I would havehim throw them down there.
I really miss having thelaundry chute, because it just
gave him something to lookforward to and also something to
fear.
He loves being scared.
He'll attach craziness toanything like the FBI warning on
(07:52):
old VHS tapes where the screenturns blue and it says FBI
warning and it's, you know,about pirating videos.
Well, for some reason heattached scary feelings to that
and he'll search for all theseyears, as long as I've known him
, to be able to search somethingon the internet.
He'll go on the internet and hewill search for FBI, blue
(08:14):
warning and that's.
He'll run around saying, oh,fbi, blue warning, blue warning,
fbi, blue warning.
That's a thing for him.
You know he also has the MGMlion that scared the shit out of
him when he was a baby and notpaying attention.
He knows that the lion roarsbut he wasn't looking at the
time that it roared one day andit really scared him and he
(08:35):
hated that, but then he loved itafter that.
So he's always looking for thelion to roar.
Recently he started searching Ithink it's Lighthouse
Productions, it's just the logofor Lighthouse Productions and
he just brought me up to the TVthe other day to show me.
Actually, he was trying to hideit from me.
I was like I don't care, watchwhat you want, what is it?
You know he's like, oh okay, heturns up Lighthouse Productions
(08:58):
and he went through all theseconniptions just to bring up the
one on YouTube that I was likewhat is that from?
And it was Army of Darkness.
They're the producers of Armyof Darkness, apparently.
So you never know, but he'salways attaching scary emotion
(09:19):
to meaningless things, otherwisemeaningless things.
Oh, the other thing that workedout really well was, while Jacob
was gone and we were gettingthe house ready, we took all of
his school pictures and hungthem up going up the stairs in
succession.
One funny thing about that isthat almost every single school
picture that he ever took itlooks like they caught him right
(09:43):
before he snapped out.
You know, and you know there'sthe, there's the meltdown, but
then there's the I don't knowlike the pre-meltdown, where it
could go.
Either way, it's just thebouncing off the walls and it
just you don't know.
He's either going to go bouncearound and be happy like Tigger
or he's going to go into a fullmeltdown.
There's that little thing, andthat look in his eye is in
(10:07):
almost every school picture thathe ever took, and it just makes
you laugh.
If you know the kid, you knowthat he is about to start some
shit, and those people werereally in for it, and they
caught him just at the righttime, and you can just imagine
what must have happened afterthat flash went off.
There was one picture inparticular, though, we put this
(10:27):
really beautiful shirt on him.
It was a beige button down, ithad a mural of wild horses
running on it, and it was justperfect for him.
The picture was the worstpicture ever.
We were so mad that they evensent that home as a possibility
and wanted us to pay for that,and it ended up not happening.
I don't know how, but we didn'thave a school picture for that
(10:50):
year.
I mean, we have it, but justawful.
Other people say, oh, youshould have kept it because it's
a piece of his history.
I'm just like I don't want himseeing himself in that state,
because if we hang that up andhe thinks that's okay and
acceptable, he loves to look athimself.
He's like a peacock.
They love to look at themselvesand they attack their
(11:10):
reflection and they do tricksfor themselves.
That's just what he does.
If he can see himself in thereflection of the glass, on the
picture that is framed and onthe wall, that's trouble,
especially if the face lookingback at him is an ugly, scary
face that he made and that wehung up in support of it.
He will absolutely blow that upout of proportion and use it
(11:33):
all the time.
So we just we could not usethat picture because of the way
that he is, but the rest of thepictures were very cute.
He loved being the center ofattention going up the stairs.
The nice thing about havingthose pictures on the wall is it
gave him a sense for decorating.
I used that every year for theholidays, when he would come
(11:55):
home from school with projectsand pictures and all of these
things.
Instead of putting them on arefrigerator or something like
that, I would allow him tochoose where we hang it.
So it was a big ritual.
Every time, no matter what itwas, if he came home with
something that he made, I wouldstop what I was doing and we
would go grab the scotch tape.
I only had to show him one timethat I wanted to hang it up and
(12:17):
he, once he realized what I wasdoing, he got so excited and
started giggling and flappingand jumping and doing all the
happy things.
So that became a ritual and Iwould allow him to choose where
do you want this one, where doyou want this one?
And he would decorate the wholehouse with all of his stuff
that he made at school and Ithink it helped him with the
whole school thing.
(12:37):
You know he always loved school, but the older he got, the more
restrictive, I guess, it got,the more conformist it got and
the less enjoyable it got.
So anything that I could do tohelp him look forward to more of
that whole thing, I wasdefinitely willing to do it.
So I wanted to tell you aboutthis first couple months of this
(12:58):
new school.
His dad went and talked to theclass.
Everything was going great, asfar as we knew, with the kids
for the first couple of weeks.
Now, when we first moved awayand went to the Northern
Illinois place, we noticed thatthe family never came to see us.
We were always coming to seethem.
You start to realize that maybenobody cares as much as you
thought they did.
So having the mamaw and papawnot interested in coming to see
(13:22):
us for almost the entire fouryears that we lived in the
Rockford area was a littledamaging.
Finally, the papaw decided tocome up and then he decided oh
wow, they pick really coolplaces to live.
I don't think I want to leave.
So he was spending a lot moretime at our place.
Towards the end of our stay hewas there more often than we
(13:43):
ever expected and then he spenta hell of a lot of time during
that one year in the firstWisconsin house and then we
weren't home with Jacob verylong in this new house before
the Papaw came, and I'm prettysure he didn't really leave the
whole time we were there.
I mean, usually he was thereand school, I believe, started
(14:04):
at the end of August up there byOctober it was usually pretty
cold and I think that the Papawcame to see us around October.
And here's the thing that Iremember Everything was not
going great, but things wentdownhill quickly for Jacob and I
couldn't figure out what waswrong with him.
But there's a lot to tell here.
(14:25):
But I just want to start offwith we totally didn't expect it
to go wrong.
We sent him to school.
His dad would drive him down tothe end of the driveway so that
he could get on the bus.
I would pick him up because hisdad was usually out at an
appointment already.
It started to happen veryregularly that he would get off
the bus.
The bus is stopped on a pavedroad and the doors open onto a
(14:46):
gravel driveway.
That ends up splitting Rightwhere the gravel driveway meets
the paved road.
He gets off the bus andinstantly collapses onto the
rocks.
And this used to be something hewould do when he was younger.
He never actually outgrew it.
We just had to really startyelling at him because he's too
big to do it now.
But he would just go, oh, andthen fall, and that was just his
(15:07):
indication that he needed alittle love, he needed a little
comforting.
And we call him Diga.
I don't know if I ever told youthat, but his flapping noises.
He usually will go digga, digga, digga, digga, digga, digga,
digga.
So everyone calls him Diga anddigga, do and diggy.
When he would collapse when hewas younger, and he would just
make that groan and fall down,someone would always say, oh,
diga's down.
(15:27):
He would say Diga's down, youknow, and sometimes he would say
Jacob's down.
We would just kind of glorifythat, pick him up and, you know,
wipe him off.
Oh, it's okay, what's thematter, you know, whatever.
Well, he starts doing this assoon as he gets off the bus, and
now we're talking about like a13 year old.
That's not okay.
And I just I was like what isthis?
I would have to get out of thetruck and go get him and say,
(15:55):
okay, dig us down and he didn'trespond the way he used to.
He was not happy.
I don't know what was going on.
It couldn't have been the samething all the time, but there
was just something wrong againand I couldn't figure it out.
So, let's say, four out of fivedays a week he would collapse
onto the gravel and this onlyhappened for a couple of weeks.
I would tell his dad, we wouldcontact the school.
They just oh, I don't know.
You know, maybe he's tired orwhatever.
You know, this is all going onand we're trying to help him
(16:19):
keep it together.
His grandfather comes to visitand probably never leave.
I think this is one of thebiggest things that sticks out
to me for the first year ofschool in that area and it's
actually nothing to do withschool at all.
It's the fact that, while wewere trying to get him
acclimated to a new livingenvironment and a new school and
new faculty and new kids, andhis papa comes to our house to
(16:43):
stay.
At the time, we were all smokers.
I've just passed my 10-yearquitting anniversary, though, so
I'm good.
Well, this house had twodifferent living rooms, and the
one that we used the most had adoor that went out to the garage
and then the garage was justright out there to the driveway,
of course.
So I came outside and I sawthat everyone was standing in a
circle kind of in the drive.
(17:03):
And as I walked up, jacob wasstanding within a foot and a
half of his grandfather, face toface, and he says something
like Peppa, and his grandfathertakes a big drag of a cigarette
and blows it right in my son'sface, right in his fucking face.
I was so pissed, I what, what,what is wrong?
What kind of person would dothat to any other person,
(17:25):
especially someone like Jake,who's completely clean?
I mean, this boy, he's spickand span.
You know, he is this boy, he'sspick and span, he is untouched
by anything bad.
You know what I mean?
I could not believe it.
I was so mad.
And then, within a week, jacobwas sick, and he was sick for a
couple months.
I think he ended up with asinus infection.
(17:46):
It ended up to be that everyyear that school would start
when he went to school.
Anyway, he would get sick.
You know, you take time off forwinter break, you go back, he
would get sick.
And then you take time off forspring break, and then you go
back and he would get sick.
I don't know.
Was it school, you know?
Was it the kids at schoolpassing germs around?
Or was it the fact that he justinhaled somebody's cigarette
(18:08):
without even asking, and he ofcourse has no idea what's good
and bad, so he just breathed itin like normal?
He just stood right there andtook it.
It's that kind of stuff rightthere that makes you know he
can't tell you, he can't defendhimself, he doesn't have the
sense to move out of the way, hedoesn't have the sense to back
away from someone who's smoking.
I mean, you constantly have totell him.
(18:28):
I always hear his grandpatelling him you're going to get
burned with the cigarette.
I want you to back away from me, get off of me.
I'm smoking.
You know he has no sense aboutanything, right, and it's just
like okay, I expect the manthat's my senior to have enough
sense about it to not do that tomy kid.
I was abhorred.
I just could not believe that hewould do that to his own
(18:49):
special needs grandson, what thefuck is wrong with that man?
So I was pissed and I waspissed at him.
Well, I've never stopped.
I've never stopped being mad athim ever since then, and it's
not just about that, it's justthat it got worse, you know.
So that was my first realexperience with a family member
disrespecting my son like thatand not caring about his health,
(19:11):
well-being or needs at allright in my face, just blatant
blah, you know, just treatinghim like a freaking ashtray.
And you know you just startwondering about.
It's hard to tell where thingsgo wrong when everywhere around
you people are wrong towardsyour child.
It's not helpful at all.
I expect family, who loved himbefore I knew him, to do better.
(19:34):
That brings me to my feelingson this constant family presence
.
His grandfather never reallydid leave.
I mean every once in a whilewhen we wanted him there on
purpose and we would invite himto stay for a specific amount of
time and do specific activitieswith our family, his wife would
call and say that she neededhim to come home for some stupid
(19:55):
reason.
But otherwise he was alwaysthere and not contributing, not
helping with our son, nothelping with groceries, not
helping with chores, just beinga dependent.
I would have to beg his wife tosend money.
He would invite himself to thestore every time we went and
just put stuff in our cart andnot pay for it.
(20:16):
And it was just those two firstyears.
We actually ran out of propane.
There was a propane shortage.
So that means it was reallyexpensive to keep my kid warm
and nobody cared.
Nobody contributed to thefirewood, nobody contributed to
buying propane, nobodycontributed to groceries.
I mean, we were just supposedto absorb all of this and have
(20:38):
extra family there as extradependents.
I just I wasn't cool with that,and I don't know if Jacob was
cool with it either, whether hewas or not.
Is it just because I was pissedoff or or was there some sort
of imbalance because it wassupposed to be the three of us,
sometimes it was four of us,sometimes it was five or six of
us, because there are that manyfamily members who love the
(21:01):
woods and think that they'rewelcome.
That interrupts the balance oflife.
You know, when I'm feeding mykid and the other people are
there expecting to eat his foodthat I made specially for him
and then starting fights with myspouse about how I am not
feeding them.
Yes, this kind of stuffhappened, and I know that Jacob
(21:22):
is not oblivious to all of it,and I just I kind of wonder if
the imbalance was detrimental tohis development during those
years, or if he just went offthe deep end by himself.
I don't know.
But I, man, I really feel likeour family didn't get a fair
shot at being a family once wewent up there.
It was supposed to be theperfect environment, with all
(21:44):
the serenity and the outdooractivity possibilities and all
of the things that were supposedto be great.
I really feel like everythingwas muted by the presence of
people who are not part of ourfamily unit, extended family.
I just I don't know, you'llnever know, but I kind of feel
(22:04):
that the constant familypresence of people who were not
there for the first four yearsof our small family life, I kind
of feel like it messed up thebalance.
It's easy to place blame I knowit's easy to blame the teachers
, it's easy to blame this busdriver, it's easy to blame the
extended family, it's easy toblame everything but the reason
(22:26):
it's so easy is because we don'tknow.
He is not capable of telling uswhat exactly the problem is, or
if there is a problem.
We are always left to ourwhat-ifs, and maybe it's this
and maybe it's that.
There are so many, so manyexamples coming up in all of my
episodes about this type ofthing, the way that people
(22:50):
disrespect Tarrant Law and theway that they disrespect our son
, and it really it just turns mystomach to think about it all.
So these episodes, you knowthey will be short as far as the
actual stories, because I justman, they make me sick.
You know, I really thought thathaving all of that land was
going to really be therapeuticfor our son because he could
(23:12):
just be himself and not worryabout stuff.
When we were in NorthernIllinois he was in the Special
Olympics a couple years in a row.
He seemed to really love thatand everyone involved really
loved him being involved.
It was a great thing.
Except it was the funniestthing because it wasn't really
that loud there, but we wereindoors and there were a lot of
(23:33):
obstacles and you know thingsfor him to do.
He actually ran through all ofthe obstacles that he could with
his hands on his ears, evengoing through little tunnels on
the floor and stuff.
He had his hands on his earsand this was before we were wise
to the fact that maybe heshould have some noise canceling
headphones, you know.
(23:53):
So I mean we were just barebones autism back then and this
was in like 2009, 2010.
And those dates are accurate,by the way.
But yeah, he wanted to do thesport but he couldn't handle the
noise which, like I said,wasn't even that bad and I felt
terrible for him.
So I thought, you know, thismight be fun.
I have tried since then multipletimes to get him involved.
(24:15):
I bought a net for volleyballand badminton, we bought the
wiffle ball thing recently, andjust so many different things.
So I tried to teach himvolleyball, tried to teach him
badminton.
He hates everything.
Every time I see him strugglewith something, I try to remove
the thing that makes it astruggle and then recreate it
for him, and he hates it.
So I don't, I don't know.
I don't know the answers tohelping him be happy and helping
(24:37):
him enjoy things.
I just don't get what it isthat I can do for him sometimes.
In my next episode, I'll talkabout what exactly was going on
when he was throwing himself inthe driveway and what we did
about it.
The other day, he wanted to havecinnamon rolls.
We have these gluten-freecinnamon rolls that we'll buy
him once in a while.
Saturday morning, he came downhere and said he was hungry.
(24:58):
As usual, his dad was like okay, I'll be up there in 10 minutes
and we'll make you some.
What do you want?
He said cinnamon rolls.
He said, okay, we'll make yousome cinnamon rolls, I'll be up
there in 10 minutes.
So in probably 15 minutes hewent to get the cinnamon rolls
and saw that Jacob had alreadyhelped himself to the cinnamon
rolls, which normally we're likeokay, cool, he's being a big
boy If it's some of thegluten-free donuts or any other
(25:21):
treats that are ready to eat.
However, these cinnamon rollswere in the freezer.
This boy goes up there, unwrapstwo frozen, solid cinnamon rolls
about the size of a littletabletop hockey puck, you know,
or smaller and ate them frozen,solid at the table.
I don't know, you know there'sa certain level of
disappointment there, like whatis wrong with you, seriously?
(25:42):
So we've been giving him alittle bit of crap ever since
then.
Every time he wants somethingto eat, we're like do you want
it frozen or do you want it warm, you know?
And now he's like I want itwarm.
So he's been purposelydisobeying me the past few days
and I don't know why.
He just he loves to do it, andthen his dad will tell him the
same thing I just told him, andusually he'll do it just to piss
(26:03):
me off, but he actually hasn'tbeen doing what his dad asked
him to do either.
If it's something that I askedhim to do, this is something
that really lets me know heloves me all the time.
Yesterday actually, I've beengoing through a hard time
personally, just in our position.
Some of us tend to do somespiritual work on ourselves and
(26:24):
I've just been kind of gettinginto that lately again and I'm
just trying to take some comfortin those types of things.
So I've been working on myselfand I've just been kind of
getting into that lately againand I'm just trying to take some
comfort in those types ofthings.
So I've been working on myselfand I've come to a place where
I'm very aware that I am theonly woman in the house.
I am constantly a captiveaudience.
I have got to pay attention tothese performances every five
(26:47):
minutes.
I'm constantly being touchedand tapped and squeezed and
kissed and it's really annoying.
I mean it's like a nervous tickwith him.
It's not that he's doing itbecause he just loves me so much
.
It's just the same as daddy,daddy, daddy, daddy, daddy,
daddy, daddy.
I love you, I love you, I loveyou, I love you.
Touch, touch, squeeze, squeeze,kiss, kiss, tap, tap.
I just, I am so tired of beinghostage to this and I hide it
(27:10):
the best I can, but every oncein a while I just I guess I
can't hide it.
And I was just taken Sunday.
I like these Sundays in thefall and winter because of
football, I actually end up witha little bit of extra quiet
time by myself in the basement.
So I was enjoying some quiettime and Jacob came in.
I was really just trying tokeep a headache at bay and wake
(27:33):
up a little bit more.
He asked me are you okay, areyou okay?
And he kept asking are you okay, are you okay?
I kept saying yeah, I'm fine,I'm fine.
And he finally asked me onelast time.
I said I'm just tired, I'm justtired Jake.
And he said, oh, I'm sorry, Iknow you're tired.
And he put his arm around meand I just thought that was
really cute and sweet.
And then I think he left mealone the rest of the day.
(27:55):
That was really nice of him.
So every once in a while he'lllet us have our time.
He waits until he can see thatwe're broken before he'll do it,
but he'll do it for each of us.
If he can see that his dadcan't take any more of him,
(28:15):
he'll leave him alone, but hehas to drive you to that point.
Then he'll give you a littlebit of love, real love.
Hey, let me back up off you fora while.
Let you have some space.
I understand.
You know I've got a bunch ofquestions lined up for my spouse
to do the daddy interview and Iwanted to know if you have any
questions for him.
So probably within the nextthree weeks, I encourage you.
This is November 11th, it's11-11 of 24.
(28:37):
If you could get your questionsin within the next week, I will
be happy to include them in aninterview with my spouse.
Again, this is just gettingdad's take on everything.
He was there for the diagnosis.
He was there for the familytraining of how to deal with the
autism.
He was the one that advocatedin the schools around here for
Jacob.
He's also the one that I callwhen weird things happen, like
(29:03):
the one time in our townhouse.
Jacob has always, alwayspinched his bean, so he always
walks around, you know, pinchinghis bean and then one day I
noticed that there was blood onhis fingers.
I had his dad look at hispee-pee and there was a hole
worn in the skin.
I mean you could see rightthrough it.
Things like that.
(29:23):
Those are dad things, so he'sthe guy for that.
So yeah, if you have anyquestions for dad, please email
me atcontactparentingsevereautism at
gmailcom.
I'm out of time for today andI've reached my emotional limit
so I have to go, but next weekI'm going to tell you some very
interesting things about thatschool.
(29:45):
By the time you hear this, itwill be coming up on a supermoon
.
Our child is horrendouslyaffected by these supermoons, so
I wish you luck during that.
It is starting on the 15th ofNovember.
You hang in there, you're asuperhero.
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