November 6, 2024 • 33 mins
Imagine finding a hidden gem—a 50-acre sanctuary that promises tranquility and safety for a child with severe autism. That's exactly the unexpected joy we stumbled upon as we embarked on a journey to create a sensory-friendly haven for my son, Jacob. From thrilling riding trails to a peaceful pier by the river, this new chapter is not just about a change in scenery, but a much-needed shift towards hope and comfort for our family. Join us as we navigate the emotions of this monumental move and the relief of providing Jacob with the freedom to explore safely, away from the hazards of noise and traffic.
The journey of caring for a child with special needs is undeniably demanding, and sometimes, stepping back is essential. We open up about the mixed emotions of taking a month-long respite while Jacob stayed with his grandparents. This break was a double-edged sword, providing time to set up a superhero-themed room in our new home, but also fueling worries about Jacob's safety due to some unsettling social media posts. Discover how we managed the logistics of reuniting with Jacob and the challenges that come with balancing caregiver stress with ensuring his well-being.
Parenting a child with severe autism is a rollercoaster of emotions and learning experiences. We delve into the complexities of communication and emotional expression, sharing humorous anecdotes like teaching Jacob how to eat soup. The episode touches on family dynamics, including Jacob's interactions with his father, and offers insights into how "earthing" practices help both Jacob and us as caregivers. Plus, we're inviting you to join the conversation—submit your questions for an upcoming interview with Jacob's father, who brings nearly two decades of experience to share. It's a candid exploration of resilience, understanding, and the unique beauty of parenting a child with severe autism.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (00:18):
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your Sh.
, .
I'm so happy that you're herewith me today.
I had a couple of inquiries, soI need to make sure to mention
that if you would like tosupport this podcast, I have
several different avenues set upfor that.
I have four low-costsubscription tiers, which are
located on my Buzzsprout website.
(00:41):
You'll find the link on everyepisode.
I also have a Buy Me a Coffeeprogram.
So for as little as $1 and allthe way up to I don't know as
many coffees as you want to buy,you can do that for us.
I also have a merchandisewebsite.
So I would say that if you arenot a caregiver, but maybe you
love a caregiver and you seethem struggling and going
(01:02):
through the things that we gothrough and you just happen to
listen to this podcast, youshould check it out, maybe if
you're looking for some kind ofunique severe autism caregiver
gift.
My messages are heartfelt.
I didn't make a lot ofdifferent messages.
If you have someone that youlove who you want to give them a
reminder that you support themby buying them one of these
gifts.
They're pretty cool.
(01:22):
I've got phone cases and phoneaccessories.
I've got little wine tumblers,coffee mugs, water bottles,
screaming pillows Some peoplecall them throw pillows.
I've got some tote bags,hoodies, t-shirts.
I think my favorite is thecoffee cups, not only because I
love coffee, but I think themessage is really nice.
On one side of the coffee mugyou'll see the Parenting Severe
(01:46):
Autism podcast logo and on theother side it says Dear Mama or
Dear Caregiver, grandma, dad,whatever you choose.
So let's just say Mama.
It says Dear Mama, you didn'tfail.
It's part of severe autism.
You're welcome.
And then a little heart heart.
That means the most to me.
That is my constant reminderand, to be honest, when I see
(02:07):
the logo for my own podcastabout this subject that I know
reaches hundreds of peoplealready and has helped people in
their daily lives struggling ascaregivers for severe autism
individuals, that cup just makesme happy.
Just to see the logo somewhereelse besides on my screen, you
know, and that message is justso meaningful to me.
(02:30):
I think that is my favoriteproduct.
I've got a couple other littlemessages on other items, so if
you ever have time, take a lookover there and see if there's
anything you like.
The link for all of my merch islisted on each episode, I think
near the bottom, when it's onmy Buzzsprout site.
I'm not exactly sure how itshows up on everything else, but
(02:50):
I know if you hit the littleheart that says support, that
should take you to several ofthe options available to
contribute to the podcast, andyou can also navigate your way
to the website where I sell thismerch for the podcast.
Navigate your way to thewebsite where I sell this merch
for the podcast and any of theseways that you do support this
podcast.
Part of it goes to support thepodcast and help keep it running
(03:11):
.
Another portion of the proceedsis going into a savings account
to eventually be able to helpsevere autism families in need
who may not have made it onto oroff of a waiting list to get
sensory items or other specificneeds for their loved one.
We all really appreciate yoursupport.
Thank you so much.
Now, in this episode, I'mstarting off with a brand new
(03:35):
adventure and it's not going totake long to get through.
I'm going to keep the storiesshort because they are a little
heavy for me and they're alittle bit painful for me to
relive, but I also want to keepyou updated with new
developments in our currentlives as well.
So I'm trying to create a nicelittle balance.
I'm going to start out withmoving from the one house to the
(03:57):
next house.
Okay, that's where we left off.
We were in that one house forabout a year.
They sold it.
The school wasn't doing rightby my son and I was frantically
searching for spy camps.
That's where we left off.
So the house that we found, Ithought she said it was 15 acres
and I thought, oh well, that'snice.
And it turns out when we wentto see the place it was 50 acres
(04:19):
, 5-0.
It had riding trails.
It was 50 wooded acres.
It had access to a river thatwent by the house.
We had our own little pierright there.
It was amazing.
It was a dream for someone likeJacob, who has no awareness of
what's going on around him, doesnot have any fear of cars or
(04:39):
anything dangerous that can killhim.
This was a dream come true.
We instantly felt safe.
If he wanted to run or dosomething ridiculous, he didn't
have to worry about these carsand traffic, high traffic areas
and stuff like that.
We were way out.
There was no one else past ourdriveway.
Our driveway was private.
It was really safe when welived at the other house on that
(05:02):
12 acres, we had a long stripof yard and he got so good at
running.
He's always loved running, buthe got really fast.
That was the first time back inlike 2011 or 2012, when Jacob
outran his dad.
For the first time ever it was.
It was quite amazing.
Later on in life that wouldbecome detrimental, but at the
(05:25):
time it was just amazing.
So we ended up moving to a50-acre home, plenty of room
inside.
We figured it would beappreciated by Jacob because of
his sensory needs.
He wouldn't have all theneighbors around screaming.
He didn't have cows mooing allnight long and stuff like that.
We thought that he would reallyappreciate having places where
he could go and just do his ownthing in the yard.
(05:48):
The yard was huge and he couldhave found any place to sit and
just be in his own little bubble.
We just thought this is, thisis fantastic.
So the thing is, the people whowere moving out weren't moving
out for another two and a halfweeks from when we had to be out
of the house we were living in.
They were kind enough to allowus to put everything we could in
(06:09):
one bedroom of this house andthen they let us use another
room as well.
We have two rooms of this house.
We're leaving our stuff withthese total strangers.
We take our whole family and godown to Grandma and Grandpa's
house.
Right, we stayed here.
That's where we are now.
So we stayed here for about aweek getting calibrated and
(06:29):
making sure everything was set,and we got all of Jacob's food
cooked, pre-cooked andprovisions made.
We got all of his pizzas sothat he could have one pizza a
week.
We were pretty convinced thatthe grandparents were ready to
have a good time with him.
They missed him and they wantedto spend a month with him,
having fun with him.
(06:50):
I can't remember if theswimming pool was still working
at that time.
I know when they finally didfill it in, we were pretty upset
because that was really theonly draw for Jacob to come here
.
As you know, the bonds andrelationships and connections
with humans are not alwaysreliable for our kids, but he
(07:12):
does love swimming and he knowsexactly what he wants.
At every house he goes to.
Whether you have video games,movies, something that he really
likes to play with like aBeanie Baby room, or if you have
a pool, he goes to your housewith an intention.
He's not necessarily there tohang out with you, but you
better be available for him whenhe's ready to demand affection.
(07:34):
That's kind of the way he works.
We got him all set up.
Everything was great.
I pre-cooked so much food Allthey had to do was heat it up in
cookware that we supplied them,because he's not allowed to eat
microwaved food.
We're just like that.
We don't do those things.
That was our business, you know.
So we get him all set up.
We're not worried at all.
(07:54):
As long as they can followdirections that are written out
on paper, they can take care ofhim and keep him happy.
We figured that they alreadyknew the human interaction part
was going to be necessary,because he never did really grow
up past five years old, so he'salways baby Jacob to everybody,
and we were convinced that theywere going to have a great time
(08:15):
.
So my spouse and I went campingfor a week in Tennessee and it
was great.
We were tent camping and it wasphenomenal.
We had such a great time.
I think that was around 2012.
And that was the last time thetwo of us had a real vacation.
So it's been 12 years sincewe've had a break, and you might
not know we didn't know untilway, way after this that
(08:37):
caregivers and parents ofspecial needs kiddos, it's
recommended that we take avacation every six months.
Did you know that?
I didn't know that.
I didn't know that at the timeof this story either, so I'm not
going to harp on it, but it'simportant to make sure that, if
you can, you do take some timeto yourself somehow every six
(08:59):
months, even every three months,depending.
I mean, I know a lot of yourkiddos deal with much more than
just severe autism.
I think the more you have piledon you as a caregiver to watch
your child suffer and thensuffer with them and sometimes
at their hands, I think you needa vacation as much as possible.
So I'm no expert, but try totake your breaks when you can.
(09:20):
So, anyway, we're camping, wecome back, we stay for another
day or two to make sureeverything's okay and Jacob says
yes, he wants to stay.
And thank God, because we had alot of cleaning to do.
We cleaned the house that wemoved into for a week straight
and it was the hottest week thatwe've ever spent in Wisconsin
ever I mean ever.
(09:41):
We were there for a long timeever, and this house has no air
conditioning.
It's a country home.
The house wasn't ready forJacob, so if he wanted to come
home we would have let him, butit would have been a lot harder
on everybody because his roomwas its own project.
We decked it out.
His dad went nuts, making itsuperhero friendly.
It was completely 100% customdone for Jacob.
(10:05):
We were very grateful to havethe time of him being away and
not being so needy so that wecould devote our time and energy
to this project.
But the house was filthy andJacob was out there just having
a great time with Mamaw andPapaw.
We checked in frequently andeverything was fine.
He stayed for a total of onemonth.
(10:26):
So when he comes home he seesthat we are home.
This is it.
We're not moving, we're out ofthe boxes because the poor kid
had to see us all live with allof our stuff in boxes,
everything.
And I occasionally would checkFacebook and I saw some posts
that kind of rubbed me the wrongway.
They put me on high alert.
(11:00):
They were a little confusing.
You couldn't really tell.
I mean, you can't jump toconclusions with everything you
see on somebody's Facebook post,you know, but I was trying to
investigate because I saw somethings that didn't add up and
there are just certain peopleand places that Jacob should not
be around and I started seeingevidence of him possibly being
(11:21):
around these people and placeswithout us being told or asked.
It just coincided with thetiming of when we would find out
that, oh, grandma was takinghim somewhere, grandma and sissy
were taking him to a park orwhatever.
So the stories that we weregetting were not adding up with
these Facebook posts I wasseeing, but the timing was, but
(11:44):
the pictures were not matchingthe activities that we were told
would happen.
So I didn't get too mad rightaway, I just thought well, you
know, the thing is, it was hismom who had already signed her
rights away.
While we were in the Rockfordarea, we made sure all of this
was done.
We told the family that it wasdone, and this went on for
(12:05):
another two or three years, fromthe time we got full custody of
Jacob to the time that thefamily finally allowed us to
have full custody of Jacob.
It was really maddening becausewe let everybody know and then,
every year that we would comehere to visit the family for
holidays, the half-siblingswould start throwing a fit
(12:25):
because they want to have alltheir whole family together and
all of them have the same mom.
The lifestyle that she leads isthe reason the judge had no
problem giving primary custodyto my spouse in the first place,
and it is the same lifestylethat she refused to give up and
still leads to this day.
And we didn't want Jacob inthat position.
(12:47):
It is not safe for him.
Even the courts knew it wasn'tsafe for him.
So why would we want two kidswho have no idea what's good and
bad, obviously, to bring himover to a situation that's not
safe Anyhow?
I know that's off track, but itkind of is all related at the
same time.
So that was the scene that I wasseeing on Facebook while we
(13:09):
were eight hours away at ourhome getting it ready for our
son and there's no proof ofanything one way or the other.
And every time we checked in wenever got the story that, oh,
we're gonna take him over to aplace that you have said no,
don't ever take him over to.
You know.
We started seeing that kind ofstuff and it went on and on A
(13:29):
few days in a row I keptnoticing that man.
I swear that that's not wherehe's supposed to be, but I see
him in the picture, so it wasthat kind of thing, but no one
would come clean about it, sothat happened while he was there
.
I just had to lay thatgroundwork real quick and move
on to this other thing where,when the month was finally over
and I hate to say it, but Ireally enjoyed that month I
(13:51):
really really enjoyed that monthbecause I was always the one
home with him ever since westarted all of the days off of
school, everything, it wasreally just me and him.
And look, I never wanted kids,I never wanted to be a caregiver
, but I was a caregiver foreveryone all my life.
So it was really nice to nothave to take care of another
(14:16):
individual for a whole month.
And I did not miss being a mom.
I'll tell you that right now.
I'm just being honest.
I didn't miss it at all.
However, when we went to pickhim up, they met us halfway.
This is how we usually would doan exchange, because it's an
eight-hour drive.
They meet us halfway, we meetup with my spouse's mom and her
(14:37):
sister and they have Jacob inthe van and we're in some
parking lot of a hotel or gasstation.
We all get out, we say ournicey-niceys and he hugs his dad
, you know, oh, yay, jacob'shome, jacob's here, yeah, we're
going to go see our new house.
And he was cool.
And then he got to me and I gavehim a hug and he collapsed on
me and just started sobbing andI felt horrible.
(15:01):
I'm like what is going on?
What's wrong with my boy, youknow?
And then I then I realized well, maybe I did miss him, you know
, but this kid was sobbing, hecould not hold himself together.
It was really terrible.
The two women, they're reallyalien-ish anyway.
I mean, they don't ever, ever,ever show emotion to their own
(15:22):
family.
So I had no reading on them atall.
None of us could really figureout why he was so sad and they
didn't even seem that botheredby it.
They were like, oh, it made usquestion.
Obviously we couldn't talk aboutit the whole ride home, but we
were both sitting there in ourheads questioning what the fuck
just happened, what happened tothis boy.
He was there for an entiremonth.
(15:43):
We checked on him all the timeand we never heard this.
My spouse would ask are youready to come home?
And he would say no, and Ireally cringed every time he did
that, because I mean, it'seight hours, dude, why are you
putting that out there?
But it's nice to know, I mean,because he can't really put his
thoughts together, so you haveto throw him a bone, right?
(16:04):
So he would ask him that and hewould say, no, stay with papa,
or whatever.
So we had no idea he was feelingthis way and I didn't know.
I was like is it just the momthing, or is it food?
What happened?
Because these people, theydon't cook the way I do and he
loves my food, you know how itis, but I made all the food.
So I just couldn't figure out.
(16:25):
But, like I said, he's so foodmotivated and all I could think
of was well, everybody loves him.
He's always cuddling on hiswhole family when they're around
, so it has to be the food.
You know, he doesn't seem tolike me that much.
I mean, I didn't expect at thetime that he would be sobbing
because he missed me.
(16:45):
You know, I'm the hard ass andI'm the one that holds him to
expectations and stuff and Ijust I don't know.
I never figured that thatsobbing was going to be because
of my absence.
You know what I mean.
Just like when I met these guysand his dad said if I was gone
tomorrow, jake would be fine.
He wouldn't really know thedifference and I thought that
(17:06):
was really sad.
So that's one reason I startedworking with Jacob on daddy
recognition and that's why, tothis day, I still call him daddy
.
Anyway, sorry, there's a lotgoing on here.
Okay, so we started to learn,over the next four to six weeks,
little pieces of the puzzlethat we didn't know about.
That may have contributed tothe breakdown that he had when
we picked him up.
(17:26):
Once we had him home, westarted getting more answers,
but they were from him.
We kept probing the family,asking questions, because
clearly they saw that somethingwas wrong and they knew they had
to have known that.
We were not going to drop that.
We were just not going to stopinvestigating his sorrow because
he doesn't have a voice, hello.
(17:48):
So we had a fire pit there.
So we would have family firesand try to get Jacob out in
nature and I would make justlittle fire food and we would
get him out there in his littleblanket.
So one day, somehow, I think,the two of us found out that
Mama the grandmother didn't takeoff all the time that we
expected she was supposed to tospend time with baby Jacob.
(18:11):
That means that she workedthird shift.
She slept all day and wethought she was either taking
time off or she was going to benot sleeping all day.
On the days she didn't take offand spending more time with
Jacob.
Well, it turns out that he wasbasically with his grandfather
all day.
Every day the grandfathersleeps in his chair, doesn't
(18:31):
like to be interrupted, watchinghis TV shows.
That he's seen a million timesover the last 40 years in that
stupid chair.
Because he retired really earlyand he doesn't give much
attention to cooking or caringfor children, he was never
around for the baby stage of myspouse and his brother.
So, you know, not a reallygreat time for our son,
(18:53):
especially if that pool wasn'tworking.
But that was one thing.
He was neglected by bothgrandparents.
One didn't show up and theother one didn't get up.
And then we found out thatgrandfather was also the one
cooking the meals for him anddeciding what he was going to
eat.
Cooking the meals for him anddeciding what he was going to
(19:15):
eat, and even though we boughtenough pizzas to go have a one
pizza night a week for the month.
He basically fed him thosepizzas every day in a row for
however long that took.
He could eat a whole one or hecould eat a half one.
I don't know how it went, buthow do I know that it's because
my son didn't want to eat pizzafor months.
He didn't want anything to dowith pizza.
(19:36):
So I know there was a badexperience about pizza while he
was there Another night at thefire.
I may have mentioned this a longtime ago, but this is all part
of it.
He said something about sissyand mommy.
We always try to be at leastexpressionless or show a smile
and let him know it's okay totalk about it.
So he said something aboutSissy and Mommy and Jacob and I
(19:59):
think Bubba, which is thehalf-brother.
Okay, and this was like fourweeks, three or four weeks after
we had brought him home.
It takes a long time for him toblurt out words and this is all
piecing together.
He can only say two or threewords at the time and that's how
you get your stories out ofthis kid.
So he had said something aboutthose three.
He had said something about ahouse.
(20:21):
He had said something aboutdinner and I showed him the
house, what I saw on Facebook.
I said is that a house that youwent to?
And he said, yes, mommy's house.
Uh-huh, okay, who's with Jacobat mommy's house?
And he said sissy, we just keptgoing on with questions.
I showed him another picture.
Who's in this picture?
(20:41):
And they were never reallypictured together, but I mean,
it's not hard to figure out,right?
So I said who's in this picture?
And he named everyone that wasthere that day.
They don't have to be in thepicture.
He'll associate the entireexperience with that picture and
he'll tell you everything hecan think of, because that's
just what he wants to do.
Right, just get it all out ofthere.
(21:02):
So it turns out, sissy borrowedMama's car and put Jacob in it
and drove him over to Mommy'shouse, who leads the lifestyle
that Jacob is not allowed to bearound.
They took pictures and mommymade dinner, which was get this
meatloaf, carrots and salad.
I had never made meatloaf forJacob yet, so there's that I
(21:25):
also.
I never really made Jacob eatsalad, so that was not something
he pulled from his lifeexperience with me or his dad.
So that was interesting.
And then we had to confront thefamily.
Oh, I'm sorry.
Also, it came out that Sissytold Jacob, don't tell your dad,
it's a secret, don't tell yourdad.
(21:46):
Somehow I got that out of himtoo and I was astonished and his
dad was right there, so Ididn't have to feel like I had
to prove it or anything.
We had to start questioning thefamily.
They denied it, denied it,denied it, and then finally they
admitted it, because then theywere like, well, what's wrong
with that?
It's his mom.
And we were like, okay, again,she just hurts him every time
(22:06):
she sees him.
She signed papers.
They said, well, who says that?
And I said the judge said,really.
So yeah, it was really nice andI don't want anyone around my
kid.
Who's going to tell the kid,who doesn't really have a voice,
to keep secrets from the onlytwo.
And thank God she ended upletting him down and you know
(22:41):
we're still here, we're stillthe ones that care, because you
can't let people tell your kidnot to tell you stuff when they
can barely tell you anything andyou're their only advocate.
It doesn't work like that.
That was the beginning, thefirst under six months of our
new home, living on 50 acres inparadise and that was what we
(23:04):
were facing at the time with ourson.
A little update on recent things.
We've been earthing a lotlately over the past few months,
which is you just take yoursocks and shoes off and put your
bare feet on the earth, or asmuch of your body as you can on
the earth.
My spouse has been sleepingbetter ever since the first
night.
He did it.
Every night that he puts hisfeet on the earth he sleeps
(23:25):
really good and our son, I think, is sleeping better.
Our son's energy has beenevened out.
Every day that he puts his feeton the earth he seems like he's
more on an even keel, and onthe days that he does not, you
can definitely tell that he'sback to the regular or the
normal for his behavior.
So I think there might besomething to that.
(23:46):
I mean, obviously there issomething to that, but I mean
for autism specifically and forcaregivers stress levels
specifically, I think it's agood idea.
So if you can get out into somenice fresh grass or moss, give
it a shot, see how you like it,bond with the earth like that.
A couple things I want to justshare with you here.
There's a show called Blippiand this is his new favorite
(24:10):
thing.
I'll have to try to post myvideos of him.
I've taken two videos so far ofwhen he is watching Blippi.
I'll have to try to see if Ican put him on the Facebook page
for this podcast.
It's the only thing I've everseen other than the Mellow
Psychedelic Journey video onYouTube with the music and the
lava lamp stuff.
This is the only thing thatcompares to it.
(24:30):
He is silent and fixated on thetelevision the whole time that
this Blippi character is doinghis thing and the one episode
he's hooked on is a food episode.
I don't know if they're allfood I don't think they are, but
it's cute because he's mylittle foodie anyway.
You know he's kind of a productof my foodiness and he's stuck
(24:53):
on this foodie show from thisguy named Blippi.
Have you heard of this?
How does your kid like this?
And if you haven't heard of it,can you check it out?
I think it's a Disney Plus orsomething like that, but he just
is so silent and fixated onthis character.
It's really nice to have him goand watch this show when he
wants to be around me, but Ineed him to be quiet because I
(25:14):
got work to do and he'll justsit right next to me and watch
this blippy.
He loves it.
The other day he came down andkeeps saying I want to go home
and I'm sad.
And a lot of times we have tosay like this is our home right
now, this is our home, and it'sjust really a weird thing for
him to say.
But he keeps saying it.
(25:34):
When he starts getting reallyagitated and to where we just
can't deal with him anymore, hecan barely deal with himself.
It seems like, and he can'tdeal with us dealing with him,
he'll say things like I want togo home and then he'll say I'm
sad and he'll waver betweenangry and sad, angry and sad.
And then if you ask why orwhatever, he'll just say because
(25:55):
of, because of, because of, andthen he'll say Spider-Man or
something like that.
So he doesn't have the rest ofthe sentence or the rest of the
thought pattern for that.
But we keep trying.
The other day he was reallyfreaking out again in the
morning.
He wouldn't calm down longenough to even answer his dad's
questions or let him finishasking a question, and I know
(26:16):
that he knew what he was asking.
He just wouldn't cooperate andwe were just trying to find out
what was wrong.
So I have a little stuffedanimal, it's a sloth.
He likes to come down and holdhim, sometimes while he sits
here and watches TV.
So I gave him the sloth and Iasked him would you like to tell
Mr Sloth what's wrong with you,why are you feeling sad or
angry or whatever?
And so we let him talk to thesloth and he ended up just
(26:39):
hugging it.
But sometimes he can yell atthe sloth and you know he'll
stand there and he'll point hisfinger and he'll mimic yelling
just with a high whisper voice.
And you can at least extractthe syllables to see what they
sound like, because they'reusually going to be related to
mama or papa or dad or Shannondoll.
(27:00):
We tried that but that didn'twork.
But he did say I'm all alone.
And that's a hard one to arguewith.
You know, we try to get him tobe happy and we try to show him
that you know you haveeverything, you even have
servants.
What's wrong?
Why are you so depressed?
You know you have us giving youthe world on a silver platter
(27:22):
all day, every day.
I know there's a lot, you know,but on the surface why are you
sad?
What is the deal?
You're well taken care of,you're loved, you're provided
for, you're safe, you're warmwhat the fuck?
But he did say I'm alone, andevery once in a while he'll pull
that card out and there's justno way to argue with that.
You know, yeah, you are alone.
(27:42):
You're in your head.
No one's in there with you.
You can't get out.
We don't like hanging out withyou all the time.
You're too demanding of us, sowe have to go our own way.
We have to live life.
We have to make money tosupport you.
You have no friends.
There's no one who can babysityou.
The guy who hangs out with you,as your papa, is barely there.
(28:04):
Yeah, you're alone.
I don't know what to say tothat.
It's just heartbreaking and Iknow he feels it all the time.
Every once in a while he'll sayit.
And then there was this weirdthing that happened the other
day.
So I was making him tomato soupand a grilled cheese sandwich
and the first time I ever sawhim eat soup, I gave it to him
and I thought he had had soupbefore.
I was pretty sure we had takenhim to have soup in other places
(28:27):
, like I think we went tomedieval times.
However, they don't give youspoons at medieval times.
So there's that.
But I took it for granted thathe knew how to eat soup and
obviously he's not good atholding silverware and stuff.
But back when he was like nine,I gave him soup and he put his
whole hand in there in the bowl.
I was horrified.
That was how he.
I gave him a spoon, I put it inthe bowl and he just put his
(28:49):
whole hand in there and startsfeeding himself from his hand,
and I have since taught him howto eat soup.
So I needed a spoon to get thepan scraped.
So I asked him will you get mea spoon?
And it's two feet away from meand he says yes, okay.
He opens the drawer and hestares at it and I can see from
where I'm standing that it'sfull of silverware, absolutely
(29:11):
full.
And he stares at it for aminute and he says I'm sorry,
there's no spoon here, and I waslike it.
And he says I'm sorry there'sno spoon here and I was like, uh
, just give me a big one.
Then he looks at the tablespoonand then grabs the teaspoon and
basically almost gives it to me.
And when I went to grab it, hetook it away and put it back and
(29:33):
closed the drawer and starts towalk away.
I'm like give it to me.
What is that?
He does that to me a lot, a lotLike he.
Just I think he hates doingwhat I ask him to do, no matter
how nice or how strict I amabout it.
I think he just likes messingwith me and we all know that I
am his toy.
But you know, I'm standingthere with a hot pot and I'm
(29:54):
trying to scrape it.
I, you can at least use yourbetter judgment.
Hot pot and I'm trying toscrape it.
You can at least use yourbetter judgment.
Anyway, so that's my storytoday, and as I'm recording this
, it is election day.
Tensions are high and my son hasbeen feeling it.
There was a it was eclipseseason, as they say recently,
and this whole new moon thingthat has been happening that I
(30:15):
think is over as of yesterdaywas terrible.
Usually he's a full moon crazy,but this time he's been a full
moon all the way to new mooncrazy and it has really been
quite a ride.
He's back to having to takebaths at eight o'clock in the
morning, and then again in theafternoon and sometimes again at
night.
There's just no other way tokeep him calm and keep him under
(30:37):
control.
He's starting to punch himselfin.
Keep him calm and keep himunder control.
He's starting to punch himselfin the head more and more.
We're still having troublegetting his prescriptions filled
because the doctor is still outof the country or whatever, and
it is a nerve wracking time forus right now with all the
hostility everywhere.
And he picks up on that.
Plus, the weather has beenterrible and when the weather is
(30:59):
bad he's bad and it's just beenugh, it's just been crappy all
the way around.
But then he'll turn aroundafter I get him good and high
with his cannabis.
He'll just be so happy.
And I've been trying to get himto understand for years that you
know you come down here andabuse me and abuse yourself, and
(31:19):
then you fight with your dadand you do this for two hours
until you finally allow yourselfenough time to breathe and
realize that the medicine isdoing pretty damn good for you.
Now, all of a sudden you'rehappy, you want to be lovey and
happy and funny and dance andsing and shit, and we're still
over here licking our wounds.
(31:40):
You know it doesn't work thatway.
And all he just keeps sayingsorry, sorry, sorry.
And then I keep trying toexplain to him what's going on
and how you can't treat peoplelike that.
And then you know if he's highenough he won't get mad.
If he's not high enough, hegets mad at me all over again.
So my next episode is going tobe more on how severe began to
(32:03):
rear its ugly head in our autismworld.
There are so many stories Ireally can't tell you which one
is coming up next.
It's a lot of digging deep forme, so please excuse me while I
work through these things again,I kind of have to relive
everything.
It's a little bit hard.
I've also been talking with hisdad.
His dad really wants to do thedad episode.
(32:25):
So if you guys have anyquestions about the early years
or about you know, anything todo with fathering a child with
severe autism from babyhood andinto adulthood he's 23 now.
You know he's getting ready tobe 24 in December.
So really he was diagnosed, Ibelieve, at five, perhaps just
(32:46):
about 19 years of experiencewith dad, you know, and I've got
lots of questions to ask him aswell.
But if you have anything thatyou are wondering about.
Please send me an email atcontactparentingsevereautism at
gmailcom.
You can also send me a text onmy Buzzsprout website.
On each episode, there's a wayto send me fan mail, and I think
(33:10):
that comes across as a text.
You can also send me messageson my Facebook page not
Messenger so much, but the pageitself, and then also on the Buy
Me a Coffee or the subscriptionpage.
You can leave notes on there aswell, I believe.
So if you have any questionsthat you want me to include,
please send them over to me.
Over the next couple of weeks.
(33:30):
I'll be interviewing him,hopefully within the next month
or so.
I'm thinking about you guys outthere all the time.
I hope everything's going wellfor you.
You hang in there.
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.
I had a couple of inquiries, soI need to make sure to mention
that if you would like tosupport this podcast, I have
several different avenues set upfor that.
I have four low-costsubscription tiers, which are
located on my Buzzsprout website.
(00:41):
You'll find the link on everyepisode.
I also have a Buy Me a Coffeeprogram.
So for as little as $1 and allthe way up to I don't know as
many coffees as you want to buy,you can do that for us.
I also have a merchandisewebsite.
So I would say that if you arenot a caregiver, but maybe you
love a caregiver and you seethem struggling and going
(01:02):
through the things that we gothrough and you just happen to
listen to this podcast, youshould check it out, maybe if
you're looking for some kind ofunique severe autism caregiver
gift.
My messages are heartfelt.
I didn't make a lot ofdifferent messages.
If you have someone that youlove who you want to give them a
reminder that you support themby buying them one of these
gifts.
They're pretty cool.
(01:22):
I've got phone cases and phoneaccessories.
I've got little wine tumblers,coffee mugs, water bottles,
screaming pillows Some peoplecall them throw pillows.
I've got some tote bags,hoodies, t-shirts.
I think my favorite is thecoffee cups, not only because I
love coffee, but I think themessage is really nice.
On one side of the coffee mugyou'll see the Parenting Severe
(01:46):
Autism podcast logo and on theother side it says Dear Mama or
Dear Caregiver, grandma, dad,whatever you choose.
So let's just say Mama.
It says Dear Mama, you didn'tfail.
It's part of severe autism.
You're welcome.
And then a little heart heart.
That means the most to me.
That is my constant reminderand, to be honest, when I see
(02:07):
the logo for my own podcastabout this subject that I know
reaches hundreds of peoplealready and has helped people in
their daily lives struggling ascaregivers for severe autism
individuals, that cup just makesme happy.
Just to see the logo somewhereelse besides on my screen, you
know, and that message is justso meaningful to me.
(02:30):
I think that is my favoriteproduct.
I've got a couple other littlemessages on other items, so if
you ever have time, take a lookover there and see if there's
anything you like.
The link for all of my merch islisted on each episode, I think
near the bottom, when it's onmy Buzzsprout site.
I'm not exactly sure how itshows up on everything else, but
(02:50):
I know if you hit the littleheart that says support, that
should take you to several ofthe options available to
contribute to the podcast, andyou can also navigate your way
to the website where I sell thismerch for the podcast.
Navigate your way to thewebsite where I sell this merch
for the podcast and any of theseways that you do support this
podcast.
Part of it goes to support thepodcast and help keep it running
(03:11):
.
Another portion of the proceedsis going into a savings account
to eventually be able to helpsevere autism families in need
who may not have made it onto oroff of a waiting list to get
sensory items or other specificneeds for their loved one.
We all really appreciate yoursupport.
Thank you so much.
Now, in this episode, I'mstarting off with a brand new
(03:35):
adventure and it's not going totake long to get through.
I'm going to keep the storiesshort because they are a little
heavy for me and they're alittle bit painful for me to
relive, but I also want to keepyou updated with new
developments in our currentlives as well.
So I'm trying to create a nicelittle balance.
I'm going to start out withmoving from the one house to the
(03:57):
next house.
Okay, that's where we left off.
We were in that one house forabout a year.
They sold it.
The school wasn't doing rightby my son and I was frantically
searching for spy camps.
That's where we left off.
So the house that we found, Ithought she said it was 15 acres
and I thought, oh well, that'snice.
And it turns out when we wentto see the place it was 50 acres
(04:19):
, 5-0.
It had riding trails.
It was 50 wooded acres.
It had access to a river thatwent by the house.
We had our own little pierright there.
It was amazing.
It was a dream for someone likeJacob, who has no awareness of
what's going on around him, doesnot have any fear of cars or
(04:39):
anything dangerous that can killhim.
This was a dream come true.
We instantly felt safe.
If he wanted to run or dosomething ridiculous, he didn't
have to worry about these carsand traffic, high traffic areas
and stuff like that.
We were way out.
There was no one else past ourdriveway.
Our driveway was private.
It was really safe when welived at the other house on that
(05:02):
12 acres, we had a long stripof yard and he got so good at
running.
He's always loved running, buthe got really fast.
That was the first time back inlike 2011 or 2012, when Jacob
outran his dad.
For the first time ever it was.
It was quite amazing.
Later on in life that wouldbecome detrimental, but at the
(05:25):
time it was just amazing.
So we ended up moving to a50-acre home, plenty of room
inside.
We figured it would beappreciated by Jacob because of
his sensory needs.
He wouldn't have all theneighbors around screaming.
He didn't have cows mooing allnight long and stuff like that.
We thought that he would reallyappreciate having places where
he could go and just do his ownthing in the yard.
(05:48):
The yard was huge and he couldhave found any place to sit and
just be in his own little bubble.
We just thought this is, thisis fantastic.
So the thing is, the people whowere moving out weren't moving
out for another two and a halfweeks from when we had to be out
of the house we were living in.
They were kind enough to allowus to put everything we could in
(06:09):
one bedroom of this house andthen they let us use another
room as well.
We have two rooms of this house.
We're leaving our stuff withthese total strangers.
We take our whole family and godown to Grandma and Grandpa's
house.
Right, we stayed here.
That's where we are now.
So we stayed here for about aweek getting calibrated and
(06:29):
making sure everything was set,and we got all of Jacob's food
cooked, pre-cooked andprovisions made.
We got all of his pizzas sothat he could have one pizza a
week.
We were pretty convinced thatthe grandparents were ready to
have a good time with him.
They missed him and they wantedto spend a month with him,
having fun with him.
(06:50):
I can't remember if theswimming pool was still working
at that time.
I know when they finally didfill it in, we were pretty upset
because that was really theonly draw for Jacob to come here
.
As you know, the bonds andrelationships and connections
with humans are not alwaysreliable for our kids, but he
(07:12):
does love swimming and he knowsexactly what he wants.
At every house he goes to.
Whether you have video games,movies, something that he really
likes to play with like aBeanie Baby room, or if you have
a pool, he goes to your housewith an intention.
He's not necessarily there tohang out with you, but you
better be available for him whenhe's ready to demand affection.
(07:34):
That's kind of the way he works.
We got him all set up.
Everything was great.
I pre-cooked so much food Allthey had to do was heat it up in
cookware that we supplied them,because he's not allowed to eat
microwaved food.
We're just like that.
We don't do those things.
That was our business, you know.
So we get him all set up.
We're not worried at all.
(07:54):
As long as they can followdirections that are written out
on paper, they can take care ofhim and keep him happy.
We figured that they alreadyknew the human interaction part
was going to be necessary,because he never did really grow
up past five years old, so he'salways baby Jacob to everybody,
and we were convinced that theywere going to have a great time
(08:15):
.
So my spouse and I went campingfor a week in Tennessee and it
was great.
We were tent camping and it wasphenomenal.
We had such a great time.
I think that was around 2012.
And that was the last time thetwo of us had a real vacation.
So it's been 12 years sincewe've had a break, and you might
not know we didn't know untilway, way after this that
(08:37):
caregivers and parents ofspecial needs kiddos, it's
recommended that we take avacation every six months.
Did you know that?
I didn't know that.
I didn't know that at the timeof this story either, so I'm not
going to harp on it, but it'simportant to make sure that, if
you can, you do take some timeto yourself somehow every six
(08:59):
months, even every three months,depending.
I mean, I know a lot of yourkiddos deal with much more than
just severe autism.
I think the more you have piledon you as a caregiver to watch
your child suffer and thensuffer with them and sometimes
at their hands, I think you needa vacation as much as possible.
So I'm no expert, but try totake your breaks when you can.
(09:20):
So, anyway, we're camping, wecome back, we stay for another
day or two to make sureeverything's okay and Jacob says
yes, he wants to stay.
And thank God, because we had alot of cleaning to do.
We cleaned the house that wemoved into for a week straight
and it was the hottest week thatwe've ever spent in Wisconsin
ever I mean ever.
(09:41):
We were there for a long timeever, and this house has no air
conditioning.
It's a country home.
The house wasn't ready forJacob, so if he wanted to come
home we would have let him, butit would have been a lot harder
on everybody because his roomwas its own project.
We decked it out.
His dad went nuts, making itsuperhero friendly.
It was completely 100% customdone for Jacob.
(10:05):
We were very grateful to havethe time of him being away and
not being so needy so that wecould devote our time and energy
to this project.
But the house was filthy andJacob was out there just having
a great time with Mamaw andPapaw.
We checked in frequently andeverything was fine.
He stayed for a total of onemonth.
(10:26):
So when he comes home he seesthat we are home.
This is it.
We're not moving, we're out ofthe boxes because the poor kid
had to see us all live with allof our stuff in boxes,
everything.
And I occasionally would checkFacebook and I saw some posts
that kind of rubbed me the wrongway.
They put me on high alert.
(11:00):
They were a little confusing.
You couldn't really tell.
I mean, you can't jump toconclusions with everything you
see on somebody's Facebook post,you know, but I was trying to
investigate because I saw somethings that didn't add up and
there are just certain peopleand places that Jacob should not
be around and I started seeingevidence of him possibly being
(11:21):
around these people and placeswithout us being told or asked.
It just coincided with thetiming of when we would find out
that, oh, grandma was takinghim somewhere, grandma and sissy
were taking him to a park orwhatever.
So the stories that we weregetting were not adding up with
these Facebook posts I wasseeing, but the timing was, but
(11:44):
the pictures were not matchingthe activities that we were told
would happen.
So I didn't get too mad rightaway, I just thought well, you
know, the thing is, it was hismom who had already signed her
rights away.
While we were in the Rockfordarea, we made sure all of this
was done.
We told the family that it wasdone, and this went on for
(12:05):
another two or three years, fromthe time we got full custody of
Jacob to the time that thefamily finally allowed us to
have full custody of Jacob.
It was really maddening becausewe let everybody know and then,
every year that we would comehere to visit the family for
holidays, the half-siblingswould start throwing a fit
(12:25):
because they want to have alltheir whole family together and
all of them have the same mom.
The lifestyle that she leads isthe reason the judge had no
problem giving primary custodyto my spouse in the first place,
and it is the same lifestylethat she refused to give up and
still leads to this day.
And we didn't want Jacob inthat position.
(12:47):
It is not safe for him.
Even the courts knew it wasn'tsafe for him.
So why would we want two kidswho have no idea what's good and
bad, obviously, to bring himover to a situation that's not
safe Anyhow?
I know that's off track, but itkind of is all related at the
same time.
So that was the scene that I wasseeing on Facebook while we
(13:09):
were eight hours away at ourhome getting it ready for our
son and there's no proof ofanything one way or the other.
And every time we checked in wenever got the story that, oh,
we're gonna take him over to aplace that you have said no,
don't ever take him over to.
You know.
We started seeing that kind ofstuff and it went on and on A
(13:29):
few days in a row I keptnoticing that man.
I swear that that's not wherehe's supposed to be, but I see
him in the picture, so it wasthat kind of thing, but no one
would come clean about it, sothat happened while he was there
.
I just had to lay thatgroundwork real quick and move
on to this other thing where,when the month was finally over
and I hate to say it, but Ireally enjoyed that month I
(13:51):
really really enjoyed that monthbecause I was always the one
home with him ever since westarted all of the days off of
school, everything, it wasreally just me and him.
And look, I never wanted kids,I never wanted to be a caregiver
, but I was a caregiver foreveryone all my life.
So it was really nice to nothave to take care of another
(14:16):
individual for a whole month.
And I did not miss being a mom.
I'll tell you that right now.
I'm just being honest.
I didn't miss it at all.
However, when we went to pickhim up, they met us halfway.
This is how we usually would doan exchange, because it's an
eight-hour drive.
They meet us halfway, we meetup with my spouse's mom and her
(14:37):
sister and they have Jacob inthe van and we're in some
parking lot of a hotel or gasstation.
We all get out, we say ournicey-niceys and he hugs his dad
, you know, oh, yay, jacob'shome, jacob's here, yeah, we're
going to go see our new house.
And he was cool.
And then he got to me and I gavehim a hug and he collapsed on
me and just started sobbing andI felt horrible.
(15:01):
I'm like what is going on?
What's wrong with my boy, youknow?
And then I then I realized well, maybe I did miss him, you know
, but this kid was sobbing, hecould not hold himself together.
It was really terrible.
The two women, they're reallyalien-ish anyway.
I mean, they don't ever, ever,ever show emotion to their own
(15:22):
family.
So I had no reading on them atall.
None of us could really figureout why he was so sad and they
didn't even seem that botheredby it.
They were like, oh, it made usquestion.
Obviously we couldn't talk aboutit the whole ride home, but we
were both sitting there in ourheads questioning what the fuck
just happened, what happened tothis boy.
He was there for an entiremonth.
(15:43):
We checked on him all the timeand we never heard this.
My spouse would ask are youready to come home?
And he would say no, and Ireally cringed every time he did
that, because I mean, it'seight hours, dude, why are you
putting that out there?
But it's nice to know, I mean,because he can't really put his
thoughts together, so you haveto throw him a bone, right?
(16:04):
So he would ask him that and hewould say, no, stay with papa,
or whatever.
So we had no idea he was feelingthis way and I didn't know.
I was like is it just the momthing, or is it food?
What happened?
Because these people, theydon't cook the way I do and he
loves my food, you know how itis, but I made all the food.
So I just couldn't figure out.
(16:25):
But, like I said, he's so foodmotivated and all I could think
of was well, everybody loves him.
He's always cuddling on hiswhole family when they're around
, so it has to be the food.
You know, he doesn't seem tolike me that much.
I mean, I didn't expect at thetime that he would be sobbing
because he missed me.
(16:45):
You know, I'm the hard ass andI'm the one that holds him to
expectations and stuff and Ijust I don't know.
I never figured that thatsobbing was going to be because
of my absence.
You know what I mean.
Just like when I met these guysand his dad said if I was gone
tomorrow, jake would be fine.
He wouldn't really know thedifference and I thought that
(17:06):
was really sad.
So that's one reason I startedworking with Jacob on daddy
recognition and that's why, tothis day, I still call him daddy
.
Anyway, sorry, there's a lotgoing on here.
Okay, so we started to learn,over the next four to six weeks,
little pieces of the puzzlethat we didn't know about.
That may have contributed tothe breakdown that he had when
we picked him up.
(17:26):
Once we had him home, westarted getting more answers,
but they were from him.
We kept probing the family,asking questions, because
clearly they saw that somethingwas wrong and they knew they had
to have known that.
We were not going to drop that.
We were just not going to stopinvestigating his sorrow because
he doesn't have a voice, hello.
(17:48):
So we had a fire pit there.
So we would have family firesand try to get Jacob out in
nature and I would make justlittle fire food and we would
get him out there in his littleblanket.
So one day, somehow, I think,the two of us found out that
Mama the grandmother didn't takeoff all the time that we
expected she was supposed to tospend time with baby Jacob.
(18:11):
That means that she workedthird shift.
She slept all day and wethought she was either taking
time off or she was going to benot sleeping all day.
On the days she didn't take offand spending more time with
Jacob.
Well, it turns out that he wasbasically with his grandfather
all day.
Every day the grandfathersleeps in his chair, doesn't
(18:31):
like to be interrupted, watchinghis TV shows.
That he's seen a million timesover the last 40 years in that
stupid chair.
Because he retired really earlyand he doesn't give much
attention to cooking or caringfor children, he was never
around for the baby stage of myspouse and his brother.
So, you know, not a reallygreat time for our son,
(18:53):
especially if that pool wasn'tworking.
But that was one thing.
He was neglected by bothgrandparents.
One didn't show up and theother one didn't get up.
And then we found out thatgrandfather was also the one
cooking the meals for him anddeciding what he was going to
eat.
Cooking the meals for him anddeciding what he was going to
(19:15):
eat, and even though we boughtenough pizzas to go have a one
pizza night a week for the month.
He basically fed him thosepizzas every day in a row for
however long that took.
He could eat a whole one or hecould eat a half one.
I don't know how it went, buthow do I know that it's because
my son didn't want to eat pizzafor months.
He didn't want anything to dowith pizza.
(19:36):
So I know there was a badexperience about pizza while he
was there Another night at thefire.
I may have mentioned this a longtime ago, but this is all part
of it.
He said something about sissyand mommy.
We always try to be at leastexpressionless or show a smile
and let him know it's okay totalk about it.
So he said something aboutSissy and Mommy and Jacob and I
(19:59):
think Bubba, which is thehalf-brother.
Okay, and this was like fourweeks, three or four weeks after
we had brought him home.
It takes a long time for him toblurt out words and this is all
piecing together.
He can only say two or threewords at the time and that's how
you get your stories out ofthis kid.
So he had said something aboutthose three.
He had said something about ahouse.
(20:21):
He had said something aboutdinner and I showed him the
house, what I saw on Facebook.
I said is that a house that youwent to?
And he said, yes, mommy's house.
Uh-huh, okay, who's with Jacobat mommy's house?
And he said sissy, we just keptgoing on with questions.
I showed him another picture.
Who's in this picture?
(20:41):
And they were never reallypictured together, but I mean,
it's not hard to figure out,right?
So I said who's in this picture?
And he named everyone that wasthere that day.
They don't have to be in thepicture.
He'll associate the entireexperience with that picture and
he'll tell you everything hecan think of, because that's
just what he wants to do.
Right, just get it all out ofthere.
(21:02):
So it turns out, sissy borrowedMama's car and put Jacob in it
and drove him over to Mommy'shouse, who leads the lifestyle
that Jacob is not allowed to bearound.
They took pictures and mommymade dinner, which was get this
meatloaf, carrots and salad.
I had never made meatloaf forJacob yet, so there's that I
(21:25):
also.
I never really made Jacob eatsalad, so that was not something
he pulled from his lifeexperience with me or his dad.
So that was interesting.
And then we had to confront thefamily.
Oh, I'm sorry.
Also, it came out that Sissytold Jacob, don't tell your dad,
it's a secret, don't tell yourdad.
(21:46):
Somehow I got that out of himtoo and I was astonished and his
dad was right there, so Ididn't have to feel like I had
to prove it or anything.
We had to start questioning thefamily.
They denied it, denied it,denied it, and then finally they
admitted it, because then theywere like, well, what's wrong
with that?
It's his mom.
And we were like, okay, again,she just hurts him every time
(22:06):
she sees him.
She signed papers.
They said, well, who says that?
And I said the judge said,really.
So yeah, it was really nice andI don't want anyone around my
kid.
Who's going to tell the kid,who doesn't really have a voice,
to keep secrets from the onlytwo.
And thank God she ended upletting him down and you know
(22:41):
we're still here, we're stillthe ones that care, because you
can't let people tell your kidnot to tell you stuff when they
can barely tell you anything andyou're their only advocate.
It doesn't work like that.
That was the beginning, thefirst under six months of our
new home, living on 50 acres inparadise and that was what we
(23:04):
were facing at the time with ourson.
A little update on recent things.
We've been earthing a lotlately over the past few months,
which is you just take yoursocks and shoes off and put your
bare feet on the earth, or asmuch of your body as you can on
the earth.
My spouse has been sleepingbetter ever since the first
night.
He did it.
Every night that he puts hisfeet on the earth he sleeps
(23:25):
really good and our son, I think, is sleeping better.
Our son's energy has beenevened out.
Every day that he puts his feeton the earth he seems like he's
more on an even keel, and onthe days that he does not, you
can definitely tell that he'sback to the regular or the
normal for his behavior.
So I think there might besomething to that.
(23:46):
I mean, obviously there issomething to that, but I mean
for autism specifically and forcaregivers stress levels
specifically, I think it's agood idea.
So if you can get out into somenice fresh grass or moss, give
it a shot, see how you like it,bond with the earth like that.
A couple things I want to justshare with you here.
There's a show called Blippiand this is his new favorite
(24:10):
thing.
I'll have to try to post myvideos of him.
I've taken two videos so far ofwhen he is watching Blippi.
I'll have to try to see if Ican put him on the Facebook page
for this podcast.
It's the only thing I've everseen other than the Mellow
Psychedelic Journey video onYouTube with the music and the
lava lamp stuff.
This is the only thing thatcompares to it.
(24:30):
He is silent and fixated on thetelevision the whole time that
this Blippi character is doinghis thing and the one episode
he's hooked on is a food episode.
I don't know if they're allfood I don't think they are, but
it's cute because he's mylittle foodie anyway.
You know he's kind of a productof my foodiness and he's stuck
(24:53):
on this foodie show from thisguy named Blippi.
Have you heard of this?
How does your kid like this?
And if you haven't heard of it,can you check it out?
I think it's a Disney Plus orsomething like that, but he just
is so silent and fixated onthis character.
It's really nice to have him goand watch this show when he
wants to be around me, but Ineed him to be quiet because I
(25:14):
got work to do and he'll justsit right next to me and watch
this blippy.
He loves it.
The other day he came down andkeeps saying I want to go home
and I'm sad.
And a lot of times we have tosay like this is our home right
now, this is our home, and it'sjust really a weird thing for
him to say.
But he keeps saying it.
(25:34):
When he starts getting reallyagitated and to where we just
can't deal with him anymore, hecan barely deal with himself.
It seems like, and he can'tdeal with us dealing with him,
he'll say things like I want togo home and then he'll say I'm
sad and he'll waver betweenangry and sad, angry and sad.
And then if you ask why orwhatever, he'll just say because
(25:55):
of, because of, because of, andthen he'll say Spider-Man or
something like that.
So he doesn't have the rest ofthe sentence or the rest of the
thought pattern for that.
But we keep trying.
The other day he was reallyfreaking out again in the
morning.
He wouldn't calm down longenough to even answer his dad's
questions or let him finishasking a question, and I know
(26:16):
that he knew what he was asking.
He just wouldn't cooperate andwe were just trying to find out
what was wrong.
So I have a little stuffedanimal, it's a sloth.
He likes to come down and holdhim, sometimes while he sits
here and watches TV.
So I gave him the sloth and Iasked him would you like to tell
Mr Sloth what's wrong with you,why are you feeling sad or
angry or whatever?
And so we let him talk to thesloth and he ended up just
(26:39):
hugging it.
But sometimes he can yell atthe sloth and you know he'll
stand there and he'll point hisfinger and he'll mimic yelling
just with a high whisper voice.
And you can at least extractthe syllables to see what they
sound like, because they'reusually going to be related to
mama or papa or dad or Shannondoll.
(27:00):
We tried that but that didn'twork.
But he did say I'm all alone.
And that's a hard one to arguewith.
You know, we try to get him tobe happy and we try to show him
that you know you haveeverything, you even have
servants.
What's wrong?
Why are you so depressed?
You know you have us giving youthe world on a silver platter
(27:22):
all day, every day.
I know there's a lot, you know,but on the surface why are you
sad?
What is the deal?
You're well taken care of,you're loved, you're provided
for, you're safe, you're warmwhat the fuck?
But he did say I'm alone, andevery once in a while he'll pull
that card out and there's justno way to argue with that.
You know, yeah, you are alone.
(27:42):
You're in your head.
No one's in there with you.
You can't get out.
We don't like hanging out withyou all the time.
You're too demanding of us, sowe have to go our own way.
We have to live life.
We have to make money tosupport you.
You have no friends.
There's no one who can babysityou.
The guy who hangs out with you,as your papa, is barely there.
(28:04):
Yeah, you're alone.
I don't know what to say tothat.
It's just heartbreaking and Iknow he feels it all the time.
Every once in a while he'll sayit.
And then there was this weirdthing that happened the other
day.
So I was making him tomato soupand a grilled cheese sandwich
and the first time I ever sawhim eat soup, I gave it to him
and I thought he had had soupbefore.
I was pretty sure we had takenhim to have soup in other places
(28:27):
, like I think we went tomedieval times.
However, they don't give youspoons at medieval times.
So there's that.
But I took it for granted thathe knew how to eat soup and
obviously he's not good atholding silverware and stuff.
But back when he was like nine,I gave him soup and he put his
whole hand in there in the bowl.
I was horrified.
That was how he.
I gave him a spoon, I put it inthe bowl and he just put his
(28:49):
whole hand in there and startsfeeding himself from his hand,
and I have since taught him howto eat soup.
So I needed a spoon to get thepan scraped.
So I asked him will you get mea spoon?
And it's two feet away from meand he says yes, okay.
He opens the drawer and hestares at it and I can see from
where I'm standing that it'sfull of silverware, absolutely
(29:11):
full.
And he stares at it for aminute and he says I'm sorry,
there's no spoon here, and I waslike it.
And he says I'm sorry there'sno spoon here and I was like, uh
, just give me a big one.
Then he looks at the tablespoonand then grabs the teaspoon and
basically almost gives it to me.
And when I went to grab it, hetook it away and put it back and
(29:33):
closed the drawer and starts towalk away.
I'm like give it to me.
What is that?
He does that to me a lot, a lotLike he.
Just I think he hates doingwhat I ask him to do, no matter
how nice or how strict I amabout it.
I think he just likes messingwith me and we all know that I
am his toy.
But you know, I'm standingthere with a hot pot and I'm
(29:54):
trying to scrape it.
I, you can at least use yourbetter judgment.
Hot pot and I'm trying toscrape it.
You can at least use yourbetter judgment.
Anyway, so that's my storytoday, and as I'm recording this
, it is election day.
Tensions are high and my son hasbeen feeling it.
There was a it was eclipseseason, as they say recently,
and this whole new moon thingthat has been happening that I
(30:15):
think is over as of yesterdaywas terrible.
Usually he's a full moon crazy,but this time he's been a full
moon all the way to new mooncrazy and it has really been
quite a ride.
He's back to having to takebaths at eight o'clock in the
morning, and then again in theafternoon and sometimes again at
night.
There's just no other way tokeep him calm and keep him under
(30:37):
control.
He's starting to punch himselfin.
Keep him calm and keep himunder control.
He's starting to punch himselfin the head more and more.
We're still having troublegetting his prescriptions filled
because the doctor is still outof the country or whatever, and
it is a nerve wracking time forus right now with all the
hostility everywhere.
And he picks up on that.
Plus, the weather has beenterrible and when the weather is
(30:59):
bad he's bad and it's just beenugh, it's just been crappy all
the way around.
But then he'll turn aroundafter I get him good and high
with his cannabis.
He'll just be so happy.
And I've been trying to get himto understand for years that you
know you come down here andabuse me and abuse yourself, and
(31:19):
then you fight with your dadand you do this for two hours
until you finally allow yourselfenough time to breathe and
realize that the medicine isdoing pretty damn good for you.
Now, all of a sudden you'rehappy, you want to be lovey and
happy and funny and dance andsing and shit, and we're still
over here licking our wounds.
(31:40):
You know it doesn't work thatway.
And all he just keeps sayingsorry, sorry, sorry.
And then I keep trying toexplain to him what's going on
and how you can't treat peoplelike that.
And then you know if he's highenough he won't get mad.
If he's not high enough, hegets mad at me all over again.
So my next episode is going tobe more on how severe began to
(32:03):
rear its ugly head in our autismworld.
There are so many stories Ireally can't tell you which one
is coming up next.
It's a lot of digging deep forme, so please excuse me while I
work through these things again,I kind of have to relive
everything.
It's a little bit hard.
I've also been talking with hisdad.
His dad really wants to do thedad episode.
(32:25):
So if you guys have anyquestions about the early years
or about you know, anything todo with fathering a child with
severe autism from babyhood andinto adulthood he's 23 now.
You know he's getting ready tobe 24 in December.
So really he was diagnosed, Ibelieve, at five, perhaps just
(32:46):
about 19 years of experiencewith dad, you know, and I've got
lots of questions to ask him aswell.
But if you have anything thatyou are wondering about.
Please send me an email atcontactparentingsevereautism at
gmailcom.
You can also send me a text onmy Buzzsprout website.
On each episode, there's a wayto send me fan mail, and I think
(33:10):
that comes across as a text.
You can also send me messageson my Facebook page not
Messenger so much, but the pageitself, and then also on the Buy
Me a Coffee or the subscriptionpage.
You can leave notes on there aswell, I believe.
So if you have any questionsthat you want me to include,
please send them over to me.
Over the next couple of weeks.
(33:30):
I'll be interviewing him,hopefully within the next month
or so.
I'm thinking about you guys outthere all the time.
I hope everything's going wellfor you.
You hang in there.
You're a superhero.
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