October 16, 2024 • 36 mins
After an unplanned hiatus, I'm back with the Parenting Severe Autism Podcast to share insights and gratitude with you all. I've got exciting news to kick things off: our podcast has caught the attention of some key players who could really make a difference for families like ours. But life's never straightforward, is it? I also dive into a rather unexpected proposal from a podcast platform manager that stirred up some mixed emotions, opening up conversation about navigating the often-complicated support systems available—or not so available—to families dealing with severe autism.
Balancing a family when one child has severe autism is no easy feat, especially when parenting styles clash. I candidly share the ups and downs of this dynamic, touching on how it affects my relationship with my spouse, who has turned to alcohol as a means of coping. In this episode, I emphasize how important it is to maintain structure and boundaries, both for the wellbeing of my child and the sanity of our home. My return to managing the household is aimed at restoring peace and stability, offering hope and advice to those in similar situations.
When it comes to healthcare, the struggle is real, and managing my son's medication has been a test of patience and advocacy. This episode sheds light on the inefficiencies of the healthcare system that many of us face, from delays in crucial appointments to educators inadvertently fostering unhealthy habits. Despite these challenges, we hold onto cherished moments—like watching my son’s unique imagination come alive in a backyard wiffle ball game. As we look to the future, planning for our child's well-being remains a priority, even as we dream of a more fulfilling life. Join me as I share experiences both heartwarming and challenging, offering solidarity and encouragement to families just like ours.
https://www.buzzsprout.com/1989825/supporters/newhttps://psa.buzzsprout.com
Get Podcast Merch at the following link: https://psapodcast.creator-spring.com/
https://www.facebook.com/people/Parenting-Severe-Autism-podcast/100083292374893/
Email: contact.parentingsevereautism@gmail.com
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (00:17):
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your host, ShannonChamberlin.
I'm so happy you're here withme today.
Well, I am back.
It's been rough.
I'm sorry these episodes havenot been regular for six months
or more, but I really believeI'm back now.
I first want to thank everyonewho has emailed me and sent me
(00:38):
tips and paid for subscriptionsto this podcast.
I am honored and very blessedto have your support and to
receive your messages.
I've received so many messagesfrom parents and professionals
who have said that this podcastis helping them.
So a little message of goodnews to all the parents
listening.
I have been receiving emailsfrom people who are in positions
(01:02):
to make a difference for ourchildren.
This podcast is reaching themand they're actually listening.
So that is, I think, absolutelyphenomenal news for us in our
community of severe autism.
It's really nice to know thatthe people are out there the
educators, the therapists,everyone who wants to learn how
(01:26):
to work better with our children.
They're finding this podcastand they're finding this podcast
to be helpful and I am sograteful.
So please continue to share and, of course, you can always
visit my Buzzsprout page.
You can contribute to thispodcast in any way that you
would like.
I still have the Buy Me aCoffee program.
I still have merchandise thatyou can pick up, and you can
(01:50):
always leave a tip or subscribe.
Apparently, I didn't even knowthat was a thing.
I'm pleasantly surprised to seethat.
And a special thank you toApril S.
Your continued contribution tomy podcast is so valuable to me.
Thank you so much.
Also, thank you guys forclicking on my links when you
are in search or in need ofpurchasing an AngelSense GPS
(02:12):
tracker for your kiddos.
My links are all still good.
So I've got the natural,healthy products that are
available in some of my links.
I've got other things that youcan get for sensory diet.
You know just all kinds ofstuff.
So thank you so much for usingmy links when you need something
for your child or yourhousehold.
And as I record this, it isOctober 3rd 2024.
(02:36):
And I want to officially statethat, as of right now, I am not
accepting or conducting newinterviews and I am not
accepting or seeking new gueststo be on my podcast.
If you are listening to thisepisode and are interested in
those opportunities, please waituntil the beginning of the year
before you contact me forinterviews.
(02:56):
I'm still trying to get myspouse nailed down for an
interview with dad and his takeon everything, and I'll get into
why that hasn't happened yet inthis episode.
Okay, the first thing I want toshare with you.
I was very excited to sharethis with you at the time that
it happened because I wasinstantly negatively affected by
it.
But then, as soon as I put mytwo cents in, I was positively
(03:19):
affected and I couldn't believeit and I was like, oh wait until
all the parents hear this.
You know I can't wait and Iwanted to just run into my
office here and start an episode.
This actually happened and hereit is.
There are several group homes,therapy homes, things like that,
around here who back when myson was being kicked out of his
(03:39):
school and not helped I'm sureyou remember that story from
earlier episodes.
All of the places around herethat could have helped us did
not help us.
Nobody.
Nobody helped us, only thepeople who were in the positions
of having to be the one to callaround on our behalf and find
(04:00):
someone who would work with ourchild.
Those people helped and it'sbecause that was their job, I
believe.
But the places that theycontacted, which was every
single place from here to anhour from here and even further.
Those places refused to helpand they said our child was too
autistic.
Even the autism school 10minutes down the road, they just
(04:21):
I don't know.
Anyway, there's this one and wedid.
I don't know.
I don't remember, honestly, ifwe went there to interview the
place and to be seen by them orif we were turned down just by
mail, email and telephone,because we did tour so many
places and we also got turneddown from places that we did not
(04:42):
tour.
So it's hard to tell.
But I received thiscommunication from this man who
is the operations manager for apodcast platform.
They were reaching out to mebecause they admired my work and
this person said as anindividual with Asperger's
syndrome, I believe that theneurologically divergent needs a
(05:03):
voice.
We want to meet with you soonto discuss a potential
partnership.
I asked him to please let meknow more about his intentions.
So he got back to me the nextday and said that they had been
in recent talks with thisspecific home around here to
create a podcast to help theneurologically divergent and
(05:24):
they believe the path forwardwould be giving a voice to the
neurological divergent and theirfamilies.
I just read that word for word.
Would I be willing?
He's wondering to work withsaid home and the platform that
they're talking about to expandmy podcast by including
neurological divergentindividuals and their parents?
(05:48):
So what?
I was so mad.
I was so, so mad and I had towalk away from that for a couple
of hours because, in case youdidn't catch it while I was
reading that email, this guy whohas Asperger's, who is well off
enough with his abilities to beable to be an operations
(06:12):
manager for a podcast andvideocast platform and is able
to effectively reach out to meand use real words, compound
words, sentences, paragraphs etc.
To communicate with me hisdesires and his needs, wants me
to include people like him in mypodcast.
(06:36):
Clearly, he did not listen to myfirst episode.
I'm flattered, I guess, but heis talking about an entity who
rejected us.
They did not want my son.
They did not want to help uswhen we were down and out and I
was at my wits end.
We had been locked in a paddedcell as a family together for
(06:59):
four hours.
No one helped us, and the unitthat he was wanting me to be
involved with for podcasting andincluding is one that turned us
down.
They turned us away and then,years later, they're looking at
me to help them.
I said hello.
(07:21):
It has been my direct experiencethat severe autism, its victims
, family members and caregiversare shunned by society and
providers such as the one thathe mentioned, largely because of
the wide net of the spectrumdisorders quote unquote
diagnosed as autism.
These high functioning,neurodiverse people who can ask
(07:42):
for help, communicate theirneeds and give back to the
community by driving back andforth to work, have concealed
the true face of autism.
And now the people trulysuffering are left without
resources because they don't fitinto the cute and cuddly image
that everyone has become soaccepting of.
That cute, cuddly image wascreated in order to conceal the
(08:07):
true impact of severe autismthat some of us live with.
These are totally separatechallenges that we live with and
we have no community with therest of the neurodivergence that
you are asking me to include.
My podcast is very tightlyniched for parenting severe
autism and will stay that way.
Tightly niched for parentingsevere autism and will stay that
way Sincerely, shannonChamberlain.
(08:29):
So that was my response.
I never received one littleresponse back.
I mean, that was it, but I wasso happy about that and I wanted
to share that with you guys.
I just couldn't believe thatthis person claims to like my
podcast and has been listeningto it and then made that
connection.
Okay, that was really fun, andthat was back in April.
(08:51):
In my last episode I mentionedthat I had to cut back on my
working hours and since thenI've actually just fully quit my
job.
I spent all my vacation days,all my personal time off, or
whatever they call it.
I took everything I could totry to help around here and get
things in order, and I was justfaced with the reality that it's
.
It's not going to work.
(09:13):
The entire family unit isaffected and falling apart, and
it's not always the autism.
Away from him.
Don't make eye contact and allowhim to behave in a manner that
(09:39):
is actually unacceptable, but itgets to a point where we get
tired of fighting for what isacceptable.
We know that he knows what thatis and he refuses to
acknowledge it.
He refuses to do it, so hebeats us down and we just end up
letting him be whoever andhowever he wants to be, even if
it's not right.
I was feeling that my spousewas dealing with it too much,
(10:04):
even though he's the one thatcan get our son to behave after
he's not behaving.
I'm the one who kind of hasground rules that when our son
is in a mode of cooperating hedoesn't break those rules.
He knows the system that I havein place because I've been the
one who's been home most of thetime.
(10:25):
As I mentioned in my lastepisode, he was making his dad
so miserable on a daily basisbecause his dad puts up with
things that I don't and weparent differently.
He really didn't have much timefor himself, so even keeping
him fed became a problem.
He harasses his dad insituations where he knows he's
(10:45):
not allowed anywhere near me ifI'm the one doing it.
As far as something likecooking in the kitchen, his dad
just kind of succumbs to thebehaviors and resorts to
drinking alcohol to numb hisnerves.
He allows the child to work hisnerves all day, every day, and
never stands up for himselfuntil he's ready to blow up.
But he needs an outlet.
(11:06):
So you know, just the littlesttiniest thing, it just rubs him
the wrong way, and the same forme, you know.
It'll rub me the wrong way too,and it's just because our
tensions are so high and we'rejust right on the edge of a
razor blade.
All the time it feels like.
I strongly caution against usingalcohol as a numbing agent or a
form of self medication.
(11:26):
It's tempting, you know, it'sfun to catch that buzz, it's
almost immediate.
But the fact is that it is adepressant.
And not only is it numbing, butfrom my direct experience
living with someone who used thealcohol as medication, it
allows the person to becomecareless and unreasonably moody,
just being unable to sleepwithout it.
(11:47):
Even if you wake up and youdon't have a beer all day,
you're an asshole.
That's just what happens if youare used to it.
You're just waiting it.
That's just what happens if youare used to it.
You're just waiting.
And I, I went through a thingtoo where I sometimes I would do
a shot of something and while Iwas cooking dinner, you know
just to get through it, becauseat that time things were really
(12:07):
bad and it's not a great idea.
So now that I'm home, I'mstarting to take over meal prep
again and all that and to runthe household the way it needs
to be run.
Jac requires a certain amount of, like I said, structure and he
needs to know for some reason.
Well, I have an idea why, buthe needs to know where his next
(12:27):
meal is coming from, when it'scoming, who's making it, what
it's going to be, and then whenmeals are done for the day.
And then when meals are donefor the day, he just is an
instant asshole.
So it's a real challenge and Ihave a way with him that his dad
doesn't.
His dad is the best with him.
I'm not the best, but I have.
I try to protect my peace.
(12:48):
I have specific rules of lifeand I don't care how special you
are.
These are my rules for my lifeand my personal space, and I
have these set up for everyone,and I think that it does the
child good to know that he is nodifferent than anyone else.
When I require an arm's lengthof space between me and another
(13:09):
person, I mean it when I say I'min the bathroom and I'm not
talking to anyone on the otherside of the door.
He's part of that.
He does not get to do that tome.
You know his dad slaves away atthe stove all day, every day,
and never has time for himselfbecause he doesn't use the same
techniques that I use for bulkmeal preparation and during the
(13:30):
whole time that he spendsserving our son, he allows our
son to abuse him verbally andinvade his space and get in the
way and not give him any peace.
It just it doesn't make senseto me because I don't function
like that.
These are all things that wouldnever happen when I was the one
cooking.
So I'm back in my role.
(13:51):
I'm taking it over slowly,because his dad's been trying
and struggling for so long thathe still has this knee-jerk
reaction that he has to do it.
So now it's a bit of a struggle, like just let me do it all,
like I did before, because eventhough it was a huge heavy load
for me, it kept the peace.
It kept me happy.
I didn't have a spouse who wasso overwhelmed and he was so
(14:15):
unhappy and his unhappinessaffects me, so I just I needed
to take it all over again.
So, although I'm not thedisciplinarian, our son knows
his place and he knows it's notin the kitchen.
As I mentioned in one of myearlier episodes, he and I spend
a lot of time together whileI'm in the kitchen.
He always sits at the diningroom table.
He'll talk and I will try todecipher what he's saying, and
(14:36):
we use that time together as alearning time, a bonding time.
I think it's a veryconstructive time, but he
doesn't allow his dad theopportunity most of the time and
his dad is not as adept atkitchen work as I, so while I'm
doing it it's just second natureand it's not even work to me.
(14:57):
His dad is kind of strugglingand he cooks different foods and
he does different things.
He thinks they're faster but infact they take a lot more time
and a lot more effort.
There wasn't a transitiontraining period where I was like
, hey, this is how to be me,I'll pull a chair up and let him
sit, but he cannot be in thekitchen and he cannot be
underfoot.
He can sit there and visit withme, keep me in his line of
(15:19):
sight, whatever it takes to makehim happy, and we will interact
that way.
And the fun thing about hangingout with me while I'm cooking
is that he gets to taste stuffand lick stuff and it's just,
it's our thing.
It's a completely differentdynamic and I want that dynamic
back.
But right now I'm reallyhappier with his dad just doing
whatever makes him happy,because I don't know, man, I
(15:42):
function better at this capacitythan he does and he's just
suffering and with him suffering, I'm suffering and the kid's
just living like a king.
He doesn't know one way fromthe other.
It just drives me nuts.
Anyway, I think it's all goodand the way that things are
getting back in order.
It never was right.
As I told you, the role reversalwas absolutely hell and we
(16:04):
tried it.
And the thing is his dad's beendoing this caregiver thing for
so long.
I don't.
We're both questioning whetherhe's even employable, honestly.
I mean, he was a salesexecutive, a business owner, you
know, and all that jazz, and Idon't know, I don't care,
because he makes decent moneytaking care of our son.
I'm trying to learn how to makemoney while being here and
(16:27):
helping the household.
Our situation is just different, just like yours, anyway.
So, as I mentioned, he wraps hislips around his teeth now ever
since the dental stuff happenedand he refuses to open his mouth
when he talks.
And I'm just like hey, if youwant to talk like an idiot, I'm
not going to respond.
You may not have a lot of words, but damn it if I'm going to
(16:47):
allow you to talk to me withyour mouth closed.
Okay, not happening, but hisdad just deals with it and you
can visibly see his dad gettinga piercing headache as he's
dealing with it.
He's absorbing this abuse.
You could just see him wincingand it's driving a stake into
the side of his head and youcould just see it on him.
And I was the one who had todeal with the unhappy daddy.
(17:11):
So it was really affecting ourrelationship and there's a
certain amount of that anyway,because he is my best friend, he
is my life partner and we'rejust going to..
.
That's going to happen, butit's just it's too hard for me
to deal with because his dad iscompletely engulfed in this
caregiving role.
(17:31):
He complains about how he justhas a terrible headache and he's
in a terrible mood and hisnerves are fried and there's
really no time for us to discussanything.
You know, it's just a shit life.
So anyway, I'm back.
That shit's over.
As I mentioned in my lastepisode, I really believe that
our son needs his medicationsadjusted and we are still afraid
(17:54):
of pursuing that action because, you know, we've seen some
really terrible things happenwith these types of medications
and we feel that we've beenreally lucky so far.
However, the bottom line isthat he does not seem to be
receiving the benefits that hedid when he first started taking
the medicine.
He is able to control himselfwhen it matters.
If there's something on theline like a pepperoni pizza or
(18:17):
any kind of a treat that heloves to eat and he stands the
chance of losing access to that,he will pull his shit together
for as long as it takes andhe'll be good all the way up,
even if it's two days Like today.
We're like hey, you don't getpizza on Saturday if you don't
straighten up, and then he'll begood.
He'll be good.
He might need one or tworeminders, but he will pull his
shit together and he will man upand he will be so good all the
(18:41):
way until about 10 minutes afterhe's done eating that pizza on
Saturday and then all hellbreaks loose and that is his
pattern.
But I know that he can do it.
See, previously there was noproof, but his dad had to start
using the food as a bargainingchip because I told him that
this kid that you deal with isthe different kid than the kid
that I dealt with, and sometimesit was worse for me than it is
(19:05):
for his dad, but the acting likehe's not in control and pulling
on his dad's heartstrings like,oh, poor Jacob, he just can't
control himself.
He just can't feel good.
He just he just can't do it.
Yes, just can't feel good.
He just he just can't do it.
Yes, he can, yes, he can.
And it's insulting once yourealize how in control he
(19:28):
actually can be.
It's really insulting becauseyou think back about all the
shit that you had to deal withand if you would have just
bribed him with a pizza, youwould have seen a different
person, and I hate that.
He's food motivated.
It's very.
He has a very unhealthyrelationship with food, but
there's nothing I can do.
(19:49):
That was instilled in him byeducators and therapists.
That's that's what they do andit's very unhealthy.
Look at how big most of ourkids are Ours, and he looks like
a POW.
But most of our kids are hugethat deal with severe autism and
I think that some of it's themedicine and some of it is the
conditioning to be foodmotivated and I don't think it's
(20:11):
fair and I wish there wassomething else.
And I have been on educatorsabout that ever since I caught
on to the fact that they werecausing him to obsess over food.
As you know, our kids obsess,they just do.
But to obsess over food, I justI can't stand that.
You know.
I think it's just really unfairof educators and therapists to
(20:32):
basically cause my child tobecome addicted to food like a
rat, like a reward rats, oncocaine or whatever it is.
You know, I think that a starsticker or a high five or just a
verbal good job is just as good, and I proved that years ago
that that kind of positivereinforcement is just as good in
(20:54):
the moment as a cracker or anorange slice, but it's healthier
because he's not constantlyseeking another bite, another
fix.
It's okay to just motivate themwith good feelings.
You don't have to alwaysmotivate them with food Not my
guy anyway.
(21:15):
I'm sure they're all differentand I don't mean to offend you
if you don't believe that but myguy, I can motivate him with
kindness or an entire buffet.
Either way it gets the job doneand one of them's healthier.
I really do feel that ourhealthcare systems have failed
us.
Again, I understand it's myresponsibility ultimately, as
(21:37):
his legal guardian, to keep upwith doctor's appointments.
Okay, I understand that.
But they also do have a placeat every medical center around
here, that is, actually theyhave a unit that is called
central scheduling and centralscheduling is supposed to be the
hub of scheduling and they'resupposed to take the orders from
(22:01):
the doctor to call and scheduleeverything Appointments, x-rays
, whatever it is.
They are the middleman betweenme and the service provider.
Whatever service that iscentral scheduling centrally
schedules these appointments.
Whatever service that iscentral scheduling centrally
schedules these appointments.
Well, six or eight months ago wehad a video call with our son's
(22:22):
doctor, which is what we hadbeen doing about every month.
During that appointment thedoctor said OK, my staff is
going to call you and get thisnext appointment set up and I'll
talk to you.
And I think she wanted to pushit out three months and I was
like, ok, great, we're doinggood.
(22:44):
Then we have always had astanding appointment for about
the past what three or fouryears to come in in August and
have his yearly checkup.
And August 1st came around andI called to see what day the
appointment was scheduled forand they said you don't have an
appointment scheduled.
So not only did centralscheduling not call to schedule
the three month update on thetelemed appointment which we
missed I don't know, it neverhappened and I didn't miss doing
(23:05):
it.
I didn't.
You know it was busy.
Things get busy, so I didn'tmake any sense to me.
I don't know what is going onwith this healthcare system, but
it is failing all the time andmy son is constantly being kind
(23:25):
of just swept under the carpetwith that.
I feel it's theirresponsibility, because the
doctors give the orders and thepeople are supposed to call
their central scheduling.
I am not central scheduling, Iam everything else that gives
this child life.
I am life manager.
I could use central schedulingto help me out a little bit here
(23:46):
and there.
And now we can't get in untilDecember for his yearly
appointment, which means that wecan't have his meds looked at
or anything, because she's outof the country.
First of all, I know that wecould try to get in with someone
, but the last time we triedthat we did get locked in a
padded cell together and I'm notgoing to do that again.
I mean, I know it's myresponsibility as a guardian,
(24:08):
but damn it, man, I really wishthat the central scheduling at
the medical facility would dotheir jobs and just help me out,
make sure he has hisappointment scheduled.
We're just screwed right now.
You know, during the month ofJuly and August, he got much,
much worse with his tempertantrums and his self-harm.
We started thinking he wasgoing to start trying to run
away again.
(24:28):
He hadn't done that for a longtime and we started thinking, oh
man, better make sureeverything is in order with this
GPS.
During July and August, weended up stopping his trips to
the day camp because he startedputting his head through so many
walls, and there was actuallydry wall repair bills being made
up for us.
(24:48):
So I was like well, you're justnot going to go anymore until
you can behave like a man,because you're six feet tall and
you're 23 years old and I'm notgoing to have you doing this.
We would drop you off at campand then 30 minutes later, we've
got to go pick you up becauseyour head's inside the wall.
It's just bullshit.
So I think that maybe it's hismeds, but maybe not, I don't
(25:11):
know.
I don't know because he iscannabis medicated as well and
that stuff.
There's no, it calms him down.
I don't know what it is, andyou can't ever get a decent
report.
Not that they're trying to hideanything over there, but
there's just no excuse for it.
At this point, though, I meanoh, what did you do to set him
off?
You know that's a greatquestion, but on the other hand
(25:34):
he knows better.
The good news on his dad is hisdad has finally gotten tired of
drinking and the first couple ofweeks were hell, but now it's
been about five or six weeks andhe's sleeping better.
He's teaming up with me.
We are doing our best to have aunited front when dealing with
our son and extended familymembers.
We're standing our ground andjust telling him to use words.
(25:55):
We're making sure that he doesnot drive like an ice pick
through our brains with hisincessant babbling.
We're just holding him moreaccountable and we're doing it
together, whereas before, withme out of the home even two days
a week and his dadself-medicating so much, we just
were never we couldn't even getalong, much less have a united
(26:16):
front with our son when he wasacting up or acting out.
So things are just gettingbetter.
He really only wants to sayabout three phrases and he will
not stop saying them, but nowthat we're both more
clear-headed and standing ourground together, he's getting
tired of us not responding tohis prompts.
(26:37):
So he usually likes to throwhis hand up to his head and say
I not feel good and no matterwhat it is, he's now realized
that we demand more information.
He'll literally wait.
Well, not right now, but he hadbeen waiting.
We'll say hey, we're going togo on a walk.
Would you like to go on a walkor do you want to stay home with
your grandpa?
(26:57):
I want to go for a walk, I wantto go walk.
However he says it, we would get15 steps down the street and he
would just start complaining Idon't feel good and start
kicking and stomping andflapping and yelling and
screaming and just huffing andpuffing and just miserable, and
make us go on a walk with him.
He wouldn't go home.
We're like okay, we don't wantto walk with you, so we would
all have to go home.
(27:17):
He ruined the whole walk forall of us.
But now we have rules.
Okay, you don't feel good?
There's a couple things you cando, and this is the answer
every time.
And if you don't like it, maybeyou should change what you're
saying.
And that's where that's wherewe're at.
So if he not feel good, heshould drink water and he should
(27:39):
go lay down.
And if he fights on thosethings, then obviously that's
not the problem.
So I'll go through all the howis your head all the way down to
his feet and his butt andeverything, and everything's
fine, but he doesn't feel good.
Other days he'll say I have aheadache and I'm like thank you,
thank you so much.
And that's only happened in thepast couple of weeks because
he's gotten so tired of ussaying the same thing.
He says the same thing, we saythe same thing and we're
(27:59):
starting to tell him as soon asdinner is over he starts having
an anxiety attack for the restof the night.
So the later we feed him, thebetter it is for us.
But if we feed him at 530, he'sdone by 545 and he can't go to
bed until 830.
So we have to deal with threehours of him being off the
charts, ridiculous and abusive,and it's just not cool.
(28:21):
So we're still dealing withthat.
But you know we're always justtelling him to go to bed, go to
bed, go to bed, go to bed.
And now he won't even go on awalk.
He's that bored with ourreaction.
He's not getting the attentionthat he's seeking with these
behaviors.
So now he's actually manning upand we're like hey, we're going
to go for a walk, do you wantto go or stay here?
(28:42):
And he might use the wrongwords, but his physical actions
say that he's staying home.
He's been getting very confusedlately with his words.
He'll say the opposite of whathe means and he'll continue
saying it.
He'll say, yeah, I want to gofor a walk, I want to go for a
walk, I want to go with you, Iwant to go with you.
But while he's saying that,he's taking off his shoes and
(29:04):
sitting on the couch putting onhis slippers Just really strange
.
But at least the physicalaction is showing us that he's
not coming with us and he's notplanning to go on his own.
He's going to stay home.
And that's the kind of autonomyI want for him.
That's the independence that Iwant him to have is to just
decide hey, you guys walk toomuch, I think you're boring, I
(29:24):
want to stay here.
Fine, great, fantastic.
Please do that.
Make more decisions on your own, that would be great.
So that's where we're at rightnow and that's, I think, a
really nice little milestone.
I guess you could say I guessyou know, in the absence of any
and all therapists and educators, we're now realizing very
(29:46):
clearly that, in order to gethim on an even keel.
It really does take both of usto be here almost all the time
and stand together with the samevalues, the same rules and the
same standards, and it requiresus to be very hard nosed about
it.
There's just no way around it.
We have to do it.
He can't play one against theother.
He's not getting a differentreaction from one parent as
(30:10):
opposed to the other parentwhich, before I quit my job,
that was the weakness.
We never spent enough timetogether as a parenting team.
He would just constantly attack, attack, attack and just try
stuff, and he knows what he'sdoing.
He's not dumb, he's autistic,he's not stupid, he's crafty, he
knows how to play with people'semotions.
(30:31):
He's just, you know he'sabusive, he's cute, he's cuddly,
he's scary and he's mean.
And when you know that abouthim, you have to unite with the
people around you who deal withhim as well, and if you guys
aren't united, the shit's goingto continue going on.
We've basically shut out all thefamily.
(30:52):
We don't ask them for anything,we don't invite them to go
anywhere.
We're never doing that campingthing again that I told you.
We haven't even addressed it.
The grandpa asked about it butwe just didn't respond.
We're not ever, ever doing thatagain.
That was the last straw, thelast time that I needed to learn
the lesson that family doesn'tgive a fuck.
It's just the two of us, andI'm really happy that I quit my
(31:16):
job.
It wasn't making me that muchmoney anyway, and I would rather
have peace in my house and inmy heart and not be constantly
at war with my spouse about thiskid.
We are stuck together.
It's the three amigos all thetime, and my only real concern,
other than creating a peacefulhousehold again, is his
(31:37):
long-term future, long-term care, elder care, stuff like that.
I just I'm going to continuemessing around with this
internet marketing.
I'm not above starting like aPornhub page or something I
don't know.
Like a Pornhub page orsomething I don't know.
(32:00):
Whatever it takes to get moremoney to get this kid taken care
of in the future, I'm going todo it.
It's so important you guys, andthere are some special needs
planning groups out there onFacebook you can find but the
bottom line is it's very hard,especially when you're placed in
a position, like we are, that,look, we both need to be home,
(32:22):
one of us can get paid fortaking care of him and the other
one still has to be home allthe time and is really, unless
you, you know, unless you startmaking a lot of money on the
internet one way or another,you're just stuck in this below
poverty income level and you gotto make the best of it.
What we'd like to do is buy amotor home because we want to
(32:43):
enjoy our lives a little bit atleast, and we can't ever leave
our child with anyone anywhere.
So, whether he likes it or not,we would like to see at least
our country.
You know, I've hardly beenanywhere in this country.
My spouse has, as when he wasyounger, and he wants to take me
to see these beautiful placesand I want to go and I'm.
(33:03):
I don't want to be stuck inthis basement being miserable
taking care of this child wholives on a separate level of the
house.
It's just too hard and it's notfun.
So our son likes to sleep a lot.
Now he likes to.
He doesn't necessarily sleep,but he spends a lot of time in
the dark in his room and that'swhat he wants to do and I'm not
going to fight it.
I used to try to get him tocome out, but that's just,
that's his autism thing.
(33:24):
That's where his bubble is atand that's where he wants to be.
And, to tell you the truth,neither I nor my spouse have the
energy or focus to keep him asbusy as he needs to be kept in
order to not go into his autismbubble.
We're still at the end of ourropes, basically with helping
him with speech and occupationaltherapy, any kind of physical
(33:47):
stuff.
It's just, it's pulling teethand look, if no one in those
professions can help him, thenhe's just not going to get the
help, because it's all we can doto survive and keep him safe
and keep ourselves safe andhealthy.
So that's where we're at.
I do have a pretty cute littlestory.
Back in August we did go toDick's Sporting Goods.
We picked up another attempt atrecreation for our son and we
(34:09):
got a wiffle ball set.
His dad took him out in thebackyard and set up a little
stack of bricks and things toset the ball on top of.
We just wanted to get the ballup really high so that Jacob
could figure it out.
The eye-hand coordination isn'talways the greatest with sporty
type things.
Finally, he starts connectingthe bat with the ball and his
(34:31):
dad says well, hit one for daddyand then hit one for mommy.
He went through family membersin the household here and then
he said hit one for Uncle Toddand he's the one who has passed
away.
And he kept aiming at the whitewiffle ball.
The white wiffle ball was ontop of a bright green like a
neon green cup about the size ofa sippy cup.
It was inverted and then theball was sitting on top of that.
(34:52):
The cup was sitting on top of abunch of cinder blocks.
Okay so a stack of cinderblocks green cup, white ball,
black bat.
Our son is very color orientedso we had to tell him hit the
white ball, you know.
And he couldn't figure out whatto hit for a little while.
But finally he started aimingat the white ball for all of the
things Hit one for daddy, hitone for mommy, hit one for Uncle
(35:13):
Todd.
And then he said hit one forBatman.
And then he said you want tohit one for Uncle Todd?
And then he said hit one forBatman.
And then he said you want tohit one for Joker.
And instead of aiming at thewhite ball, jacob aimed directly
at the green cup and he hit thegreen cup and not the white
ball, and he associates thatcolor green with the Joker.
So I thought that was reallycute and pretty impressive.
(35:34):
You know, he didn't even thinkabout it.
He just said hit one for Joker.
And he said okay, and he justhe whacked that green cup all
the way across the yard and Ithought that was pretty
impressive.
That was a neat little decisionto watch him make, even though
the object is to hit the whiteball.
But you know, he made thatdecision just because he
associates that cup with theJoker.
(35:55):
So it's very cool to see howhis mind works at times like
that.
Okay, so, now that I am dead seton being more involved in my
podcast again, here's what'shappening in the next episode.
When did things start to godownhill?
And I really kind of want to doa deep dive into what I think
started to happen, in additionto the simple fact of him aging,
(36:19):
going through puberty and allthat stuff.
I hope that if you celebrateHalloween with your special
kiddo, I hope it's all fun andwonderful for you guys.
You hang in there, you're asuperhero.
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your host, ShannonChamberlin.
I'm so happy you're here withme today.
Well, I am back.
It's been rough.
I'm sorry these episodes havenot been regular for six months
or more, but I really believeI'm back now.
I first want to thank everyonewho has emailed me and sent me
(00:38):
tips and paid for subscriptionsto this podcast.
I am honored and very blessedto have your support and to
receive your messages.
I've received so many messagesfrom parents and professionals
who have said that this podcastis helping them.
So a little message of goodnews to all the parents
listening.
I have been receiving emailsfrom people who are in positions
(01:02):
to make a difference for ourchildren.
This podcast is reaching themand they're actually listening.
So that is, I think, absolutelyphenomenal news for us in our
community of severe autism.
It's really nice to know thatthe people are out there the
educators, the therapists,everyone who wants to learn how
(01:26):
to work better with our children.
They're finding this podcastand they're finding this podcast
to be helpful and I am sograteful.
So please continue to share and, of course, you can always
visit my Buzzsprout page.
You can contribute to thispodcast in any way that you
would like.
I still have the Buy Me aCoffee program.
I still have merchandise thatyou can pick up, and you can
(01:50):
always leave a tip or subscribe.
Apparently, I didn't even knowthat was a thing.
I'm pleasantly surprised to seethat.
And a special thank you toApril S.
Your continued contribution tomy podcast is so valuable to me.
Thank you so much.
Also, thank you guys forclicking on my links when you
are in search or in need ofpurchasing an AngelSense GPS
(02:12):
tracker for your kiddos.
My links are all still good.
So I've got the natural,healthy products that are
available in some of my links.
I've got other things that youcan get for sensory diet.
You know just all kinds ofstuff.
So thank you so much for usingmy links when you need something
for your child or yourhousehold.
And as I record this, it isOctober 3rd 2024.
(02:36):
And I want to officially statethat, as of right now, I am not
accepting or conducting newinterviews and I am not
accepting or seeking new gueststo be on my podcast.
If you are listening to thisepisode and are interested in
those opportunities, please waituntil the beginning of the year
before you contact me forinterviews.
(02:56):
I'm still trying to get myspouse nailed down for an
interview with dad and his takeon everything, and I'll get into
why that hasn't happened yet inthis episode.
Okay, the first thing I want toshare with you.
I was very excited to sharethis with you at the time that
it happened because I wasinstantly negatively affected by
it.
But then, as soon as I put mytwo cents in, I was positively
(03:19):
affected and I couldn't believeit and I was like, oh wait until
all the parents hear this.
You know I can't wait and Iwanted to just run into my
office here and start an episode.
This actually happened and hereit is.
There are several group homes,therapy homes, things like that,
around here who back when myson was being kicked out of his
(03:39):
school and not helped I'm sureyou remember that story from
earlier episodes.
All of the places around herethat could have helped us did
not help us.
Nobody.
Nobody helped us, only thepeople who were in the positions
of having to be the one to callaround on our behalf and find
(04:00):
someone who would work with ourchild.
Those people helped and it'sbecause that was their job, I
believe.
But the places that theycontacted, which was every
single place from here to anhour from here and even further.
Those places refused to helpand they said our child was too
autistic.
Even the autism school 10minutes down the road, they just
(04:21):
I don't know.
Anyway, there's this one and wedid.
I don't know.
I don't remember, honestly, ifwe went there to interview the
place and to be seen by them orif we were turned down just by
mail, email and telephone,because we did tour so many
places and we also got turneddown from places that we did not
(04:42):
tour.
So it's hard to tell.
But I received thiscommunication from this man who
is the operations manager for apodcast platform.
They were reaching out to mebecause they admired my work and
this person said as anindividual with Asperger's
syndrome, I believe that theneurologically divergent needs a
(05:03):
voice.
We want to meet with you soonto discuss a potential
partnership.
I asked him to please let meknow more about his intentions.
So he got back to me the nextday and said that they had been
in recent talks with thisspecific home around here to
create a podcast to help theneurologically divergent and
(05:24):
they believe the path forwardwould be giving a voice to the
neurological divergent and theirfamilies.
I just read that word for word.
Would I be willing?
He's wondering to work withsaid home and the platform that
they're talking about to expandmy podcast by including
neurological divergentindividuals and their parents?
(05:48):
So what?
I was so mad.
I was so, so mad and I had towalk away from that for a couple
of hours because, in case youdidn't catch it while I was
reading that email, this guy whohas Asperger's, who is well off
enough with his abilities to beable to be an operations
(06:12):
manager for a podcast andvideocast platform and is able
to effectively reach out to meand use real words, compound
words, sentences, paragraphs etc.
To communicate with me hisdesires and his needs, wants me
to include people like him in mypodcast.
(06:36):
Clearly, he did not listen to myfirst episode.
I'm flattered, I guess, but heis talking about an entity who
rejected us.
They did not want my son.
They did not want to help uswhen we were down and out and I
was at my wits end.
We had been locked in a paddedcell as a family together for
(06:59):
four hours.
No one helped us, and the unitthat he was wanting me to be
involved with for podcasting andincluding is one that turned us
down.
They turned us away and then,years later, they're looking at
me to help them.
I said hello.
(07:21):
It has been my direct experiencethat severe autism, its victims
, family members and caregiversare shunned by society and
providers such as the one thathe mentioned, largely because of
the wide net of the spectrumdisorders quote unquote
diagnosed as autism.
These high functioning,neurodiverse people who can ask
(07:42):
for help, communicate theirneeds and give back to the
community by driving back andforth to work, have concealed
the true face of autism.
And now the people trulysuffering are left without
resources because they don't fitinto the cute and cuddly image
that everyone has become soaccepting of.
That cute, cuddly image wascreated in order to conceal the
(08:07):
true impact of severe autismthat some of us live with.
These are totally separatechallenges that we live with and
we have no community with therest of the neurodivergence that
you are asking me to include.
My podcast is very tightlyniched for parenting severe
autism and will stay that way.
Tightly niched for parentingsevere autism and will stay that
way Sincerely, shannonChamberlain.
(08:29):
So that was my response.
I never received one littleresponse back.
I mean, that was it, but I wasso happy about that and I wanted
to share that with you guys.
I just couldn't believe thatthis person claims to like my
podcast and has been listeningto it and then made that
connection.
Okay, that was really fun, andthat was back in April.
(08:51):
In my last episode I mentionedthat I had to cut back on my
working hours and since thenI've actually just fully quit my
job.
I spent all my vacation days,all my personal time off, or
whatever they call it.
I took everything I could totry to help around here and get
things in order, and I was justfaced with the reality that it's
.
It's not going to work.
(09:13):
The entire family unit isaffected and falling apart, and
it's not always the autism.
Away from him.
Don't make eye contact and allowhim to behave in a manner that
(09:39):
is actually unacceptable, but itgets to a point where we get
tired of fighting for what isacceptable.
We know that he knows what thatis and he refuses to
acknowledge it.
He refuses to do it, so hebeats us down and we just end up
letting him be whoever andhowever he wants to be, even if
it's not right.
I was feeling that my spousewas dealing with it too much,
(10:04):
even though he's the one thatcan get our son to behave after
he's not behaving.
I'm the one who kind of hasground rules that when our son
is in a mode of cooperating hedoesn't break those rules.
He knows the system that I havein place because I've been the
one who's been home most of thetime.
(10:25):
As I mentioned in my lastepisode, he was making his dad
so miserable on a daily basisbecause his dad puts up with
things that I don't and weparent differently.
He really didn't have much timefor himself, so even keeping
him fed became a problem.
He harasses his dad insituations where he knows he's
(10:45):
not allowed anywhere near me ifI'm the one doing it.
As far as something likecooking in the kitchen, his dad
just kind of succumbs to thebehaviors and resorts to
drinking alcohol to numb hisnerves.
He allows the child to work hisnerves all day, every day, and
never stands up for himselfuntil he's ready to blow up.
But he needs an outlet.
(11:06):
So you know, just the littlesttiniest thing, it just rubs him
the wrong way, and the same forme, you know.
It'll rub me the wrong way too,and it's just because our
tensions are so high and we'rejust right on the edge of a
razor blade.
All the time it feels like.
I strongly caution against usingalcohol as a numbing agent or a
form of self medication.
(11:26):
It's tempting, you know, it'sfun to catch that buzz, it's
almost immediate.
But the fact is that it is adepressant.
And not only is it numbing, butfrom my direct experience
living with someone who used thealcohol as medication, it
allows the person to becomecareless and unreasonably moody,
just being unable to sleepwithout it.
(11:47):
Even if you wake up and youdon't have a beer all day,
you're an asshole.
That's just what happens if youare used to it.
You're just waiting it.
That's just what happens if youare used to it.
You're just waiting.
And I, I went through a thingtoo where I sometimes I would do
a shot of something and while Iwas cooking dinner, you know
just to get through it, becauseat that time things were really
(12:07):
bad and it's not a great idea.
So now that I'm home, I'mstarting to take over meal prep
again and all that and to runthe household the way it needs
to be run.
Jac requires a certain amount of, like I said, structure and he
needs to know for some reason.
Well, I have an idea why, buthe needs to know where his next
(12:27):
meal is coming from, when it'scoming, who's making it, what
it's going to be, and then whenmeals are done for the day.
And then when meals are donefor the day, he just is an
instant asshole.
So it's a real challenge and Ihave a way with him that his dad
doesn't.
His dad is the best with him.
I'm not the best, but I have.
I try to protect my peace.
(12:48):
I have specific rules of lifeand I don't care how special you
are.
These are my rules for my lifeand my personal space, and I
have these set up for everyone,and I think that it does the
child good to know that he is nodifferent than anyone else.
When I require an arm's lengthof space between me and another
(13:09):
person, I mean it when I say I'min the bathroom and I'm not
talking to anyone on the otherside of the door.
He's part of that.
He does not get to do that tome.
You know his dad slaves away atthe stove all day, every day,
and never has time for himselfbecause he doesn't use the same
techniques that I use for bulkmeal preparation and during the
(13:30):
whole time that he spendsserving our son, he allows our
son to abuse him verbally andinvade his space and get in the
way and not give him any peace.
It just it doesn't make senseto me because I don't function
like that.
These are all things that wouldnever happen when I was the one
cooking.
So I'm back in my role.
(13:51):
I'm taking it over slowly,because his dad's been trying
and struggling for so long thathe still has this knee-jerk
reaction that he has to do it.
So now it's a bit of a struggle, like just let me do it all,
like I did before, because eventhough it was a huge heavy load
for me, it kept the peace.
It kept me happy.
I didn't have a spouse who wasso overwhelmed and he was so
(14:15):
unhappy and his unhappinessaffects me, so I just I needed
to take it all over again.
So, although I'm not thedisciplinarian, our son knows
his place and he knows it's notin the kitchen.
As I mentioned in one of myearlier episodes, he and I spend
a lot of time together whileI'm in the kitchen.
He always sits at the diningroom table.
He'll talk and I will try todecipher what he's saying, and
(14:36):
we use that time together as alearning time, a bonding time.
I think it's a veryconstructive time, but he
doesn't allow his dad theopportunity most of the time and
his dad is not as adept atkitchen work as I, so while I'm
doing it it's just second natureand it's not even work to me.
(14:57):
His dad is kind of strugglingand he cooks different foods and
he does different things.
He thinks they're faster but infact they take a lot more time
and a lot more effort.
There wasn't a transitiontraining period where I was like
, hey, this is how to be me,I'll pull a chair up and let him
sit, but he cannot be in thekitchen and he cannot be
underfoot.
He can sit there and visit withme, keep me in his line of
(15:19):
sight, whatever it takes to makehim happy, and we will interact
that way.
And the fun thing about hangingout with me while I'm cooking
is that he gets to taste stuffand lick stuff and it's just,
it's our thing.
It's a completely differentdynamic and I want that dynamic
back.
But right now I'm reallyhappier with his dad just doing
whatever makes him happy,because I don't know, man, I
(15:42):
function better at this capacitythan he does and he's just
suffering and with him suffering, I'm suffering and the kid's
just living like a king.
He doesn't know one way fromthe other.
It just drives me nuts.
Anyway, I think it's all goodand the way that things are
getting back in order.
It never was right.
As I told you, the role reversalwas absolutely hell and we
(16:04):
tried it.
And the thing is his dad's beendoing this caregiver thing for
so long.
I don't.
We're both questioning whetherhe's even employable, honestly.
I mean, he was a salesexecutive, a business owner, you
know, and all that jazz, and Idon't know, I don't care,
because he makes decent moneytaking care of our son.
I'm trying to learn how to makemoney while being here and
(16:27):
helping the household.
Our situation is just different, just like yours, anyway.
So, as I mentioned, he wraps hislips around his teeth now ever
since the dental stuff happenedand he refuses to open his mouth
when he talks.
And I'm just like hey, if youwant to talk like an idiot, I'm
not going to respond.
You may not have a lot of words, but damn it if I'm going to
(16:47):
allow you to talk to me withyour mouth closed.
Okay, not happening, but hisdad just deals with it and you
can visibly see his dad gettinga piercing headache as he's
dealing with it.
He's absorbing this abuse.
You could just see him wincingand it's driving a stake into
the side of his head and youcould just see it on him.
And I was the one who had todeal with the unhappy daddy.
(17:11):
So it was really affecting ourrelationship and there's a
certain amount of that anyway,because he is my best friend, he
is my life partner and we'rejust going to..
.
That's going to happen, butit's just it's too hard for me
to deal with because his dad iscompletely engulfed in this
caregiving role.
(17:31):
He complains about how he justhas a terrible headache and he's
in a terrible mood and hisnerves are fried and there's
really no time for us to discussanything.
You know, it's just a shit life.
So anyway, I'm back.
That shit's over.
As I mentioned in my lastepisode, I really believe that
our son needs his medicationsadjusted and we are still afraid
(17:54):
of pursuing that action because, you know, we've seen some
really terrible things happenwith these types of medications
and we feel that we've beenreally lucky so far.
However, the bottom line isthat he does not seem to be
receiving the benefits that hedid when he first started taking
the medicine.
He is able to control himselfwhen it matters.
If there's something on theline like a pepperoni pizza or
(18:17):
any kind of a treat that heloves to eat and he stands the
chance of losing access to that,he will pull his shit together
for as long as it takes andhe'll be good all the way up,
even if it's two days Like today.
We're like hey, you don't getpizza on Saturday if you don't
straighten up, and then he'll begood.
He'll be good.
He might need one or tworeminders, but he will pull his
shit together and he will man upand he will be so good all the
(18:41):
way until about 10 minutes afterhe's done eating that pizza on
Saturday and then all hellbreaks loose and that is his
pattern.
But I know that he can do it.
See, previously there was noproof, but his dad had to start
using the food as a bargainingchip because I told him that
this kid that you deal with isthe different kid than the kid
that I dealt with, and sometimesit was worse for me than it is
(19:05):
for his dad, but the acting likehe's not in control and pulling
on his dad's heartstrings like,oh, poor Jacob, he just can't
control himself.
He just can't feel good.
He just he just can't do it.
Yes, just can't feel good.
He just he just can't do it.
Yes, he can, yes, he can.
And it's insulting once yourealize how in control he
(19:28):
actually can be.
It's really insulting becauseyou think back about all the
shit that you had to deal withand if you would have just
bribed him with a pizza, youwould have seen a different
person, and I hate that.
He's food motivated.
It's very.
He has a very unhealthyrelationship with food, but
there's nothing I can do.
(19:49):
That was instilled in him byeducators and therapists.
That's that's what they do andit's very unhealthy.
Look at how big most of ourkids are Ours, and he looks like
a POW.
But most of our kids are hugethat deal with severe autism and
I think that some of it's themedicine and some of it is the
conditioning to be foodmotivated and I don't think it's
(20:11):
fair and I wish there wassomething else.
And I have been on educatorsabout that ever since I caught
on to the fact that they werecausing him to obsess over food.
As you know, our kids obsess,they just do.
But to obsess over food, I justI can't stand that.
You know.
I think it's just really unfairof educators and therapists to
(20:32):
basically cause my child tobecome addicted to food like a
rat, like a reward rats, oncocaine or whatever it is.
You know, I think that a starsticker or a high five or just a
verbal good job is just as good, and I proved that years ago
that that kind of positivereinforcement is just as good in
(20:54):
the moment as a cracker or anorange slice, but it's healthier
because he's not constantlyseeking another bite, another
fix.
It's okay to just motivate themwith good feelings.
You don't have to alwaysmotivate them with food Not my
guy anyway.
(21:15):
I'm sure they're all differentand I don't mean to offend you
if you don't believe that but myguy, I can motivate him with
kindness or an entire buffet.
Either way it gets the job doneand one of them's healthier.
I really do feel that ourhealthcare systems have failed
us.
Again, I understand it's myresponsibility ultimately, as
(21:37):
his legal guardian, to keep upwith doctor's appointments.
Okay, I understand that.
But they also do have a placeat every medical center around
here, that is, actually theyhave a unit that is called
central scheduling and centralscheduling is supposed to be the
hub of scheduling and they'resupposed to take the orders from
(22:01):
the doctor to call and scheduleeverything Appointments, x-rays
, whatever it is.
They are the middleman betweenme and the service provider.
Whatever service that iscentral scheduling centrally
schedules these appointments.
Whatever service that iscentral scheduling centrally
schedules these appointments.
Well, six or eight months ago wehad a video call with our son's
(22:22):
doctor, which is what we hadbeen doing about every month.
During that appointment thedoctor said OK, my staff is
going to call you and get thisnext appointment set up and I'll
talk to you.
And I think she wanted to pushit out three months and I was
like, ok, great, we're doinggood.
(22:44):
Then we have always had astanding appointment for about
the past what three or fouryears to come in in August and
have his yearly checkup.
And August 1st came around andI called to see what day the
appointment was scheduled forand they said you don't have an
appointment scheduled.
So not only did centralscheduling not call to schedule
the three month update on thetelemed appointment which we
missed I don't know, it neverhappened and I didn't miss doing
(23:05):
it.
I didn't.
You know it was busy.
Things get busy, so I didn'tmake any sense to me.
I don't know what is going onwith this healthcare system, but
it is failing all the time andmy son is constantly being kind
(23:25):
of just swept under the carpetwith that.
I feel it's theirresponsibility, because the
doctors give the orders and thepeople are supposed to call
their central scheduling.
I am not central scheduling, Iam everything else that gives
this child life.
I am life manager.
I could use central schedulingto help me out a little bit here
(23:46):
and there.
And now we can't get in untilDecember for his yearly
appointment, which means that wecan't have his meds looked at
or anything, because she's outof the country.
First of all, I know that wecould try to get in with someone
, but the last time we triedthat we did get locked in a
padded cell together and I'm notgoing to do that again.
I mean, I know it's myresponsibility as a guardian,
(24:08):
but damn it, man, I really wishthat the central scheduling at
the medical facility would dotheir jobs and just help me out,
make sure he has hisappointment scheduled.
We're just screwed right now.
You know, during the month ofJuly and August, he got much,
much worse with his tempertantrums and his self-harm.
We started thinking he wasgoing to start trying to run
away again.
(24:28):
He hadn't done that for a longtime and we started thinking, oh
man, better make sureeverything is in order with this
GPS.
During July and August, weended up stopping his trips to
the day camp because he startedputting his head through so many
walls, and there was actuallydry wall repair bills being made
up for us.
(24:48):
So I was like well, you're justnot going to go anymore until
you can behave like a man,because you're six feet tall and
you're 23 years old and I'm notgoing to have you doing this.
We would drop you off at campand then 30 minutes later, we've
got to go pick you up becauseyour head's inside the wall.
It's just bullshit.
So I think that maybe it's hismeds, but maybe not, I don't
(25:11):
know.
I don't know because he iscannabis medicated as well and
that stuff.
There's no, it calms him down.
I don't know what it is, andyou can't ever get a decent
report.
Not that they're trying to hideanything over there, but
there's just no excuse for it.
At this point, though, I meanoh, what did you do to set him
off?
You know that's a greatquestion, but on the other hand
(25:34):
he knows better.
The good news on his dad is hisdad has finally gotten tired of
drinking and the first couple ofweeks were hell, but now it's
been about five or six weeks andhe's sleeping better.
He's teaming up with me.
We are doing our best to have aunited front when dealing with
our son and extended familymembers.
We're standing our ground andjust telling him to use words.
(25:55):
We're making sure that he doesnot drive like an ice pick
through our brains with hisincessant babbling.
We're just holding him moreaccountable and we're doing it
together, whereas before, withme out of the home even two days
a week and his dadself-medicating so much, we just
were never we couldn't even getalong, much less have a united
(26:16):
front with our son when he wasacting up or acting out.
So things are just gettingbetter.
He really only wants to sayabout three phrases and he will
not stop saying them, but nowthat we're both more
clear-headed and standing ourground together, he's getting
tired of us not responding tohis prompts.
(26:37):
So he usually likes to throwhis hand up to his head and say
I not feel good and no matterwhat it is, he's now realized
that we demand more information.
He'll literally wait.
Well, not right now, but he hadbeen waiting.
We'll say hey, we're going togo on a walk.
Would you like to go on a walkor do you want to stay home with
your grandpa?
(26:57):
I want to go for a walk, I wantto go walk.
However he says it, we would get15 steps down the street and he
would just start complaining Idon't feel good and start
kicking and stomping andflapping and yelling and
screaming and just huffing andpuffing and just miserable, and
make us go on a walk with him.
He wouldn't go home.
We're like okay, we don't wantto walk with you, so we would
all have to go home.
(27:17):
He ruined the whole walk forall of us.
But now we have rules.
Okay, you don't feel good?
There's a couple things you cando, and this is the answer
every time.
And if you don't like it, maybeyou should change what you're
saying.
And that's where that's wherewe're at.
So if he not feel good, heshould drink water and he should
(27:39):
go lay down.
And if he fights on thosethings, then obviously that's
not the problem.
So I'll go through all the howis your head all the way down to
his feet and his butt andeverything, and everything's
fine, but he doesn't feel good.
Other days he'll say I have aheadache and I'm like thank you,
thank you so much.
And that's only happened in thepast couple of weeks because
he's gotten so tired of ussaying the same thing.
He says the same thing, we saythe same thing and we're
(27:59):
starting to tell him as soon asdinner is over he starts having
an anxiety attack for the restof the night.
So the later we feed him, thebetter it is for us.
But if we feed him at 530, he'sdone by 545 and he can't go to
bed until 830.
So we have to deal with threehours of him being off the
charts, ridiculous and abusive,and it's just not cool.
(28:21):
So we're still dealing withthat.
But you know we're always justtelling him to go to bed, go to
bed, go to bed, go to bed.
And now he won't even go on awalk.
He's that bored with ourreaction.
He's not getting the attentionthat he's seeking with these
behaviors.
So now he's actually manning upand we're like hey, we're going
to go for a walk, do you wantto go or stay here?
(28:42):
And he might use the wrongwords, but his physical actions
say that he's staying home.
He's been getting very confusedlately with his words.
He'll say the opposite of whathe means and he'll continue
saying it.
He'll say, yeah, I want to gofor a walk, I want to go for a
walk, I want to go with you, Iwant to go with you.
But while he's saying that,he's taking off his shoes and
(29:04):
sitting on the couch putting onhis slippers Just really strange
.
But at least the physicalaction is showing us that he's
not coming with us and he's notplanning to go on his own.
He's going to stay home.
And that's the kind of autonomyI want for him.
That's the independence that Iwant him to have is to just
decide hey, you guys walk toomuch, I think you're boring, I
(29:24):
want to stay here.
Fine, great, fantastic.
Please do that.
Make more decisions on your own, that would be great.
So that's where we're at rightnow and that's, I think, a
really nice little milestone.
I guess you could say I guessyou know, in the absence of any
and all therapists and educators, we're now realizing very
(29:46):
clearly that, in order to gethim on an even keel.
It really does take both of usto be here almost all the time
and stand together with the samevalues, the same rules and the
same standards, and it requiresus to be very hard nosed about
it.
There's just no way around it.
We have to do it.
He can't play one against theother.
He's not getting a differentreaction from one parent as
(30:10):
opposed to the other parentwhich, before I quit my job,
that was the weakness.
We never spent enough timetogether as a parenting team.
He would just constantly attack, attack, attack and just try
stuff, and he knows what he'sdoing.
He's not dumb, he's autistic,he's not stupid, he's crafty, he
knows how to play with people'semotions.
(30:31):
He's just, you know he'sabusive, he's cute, he's cuddly,
he's scary and he's mean.
And when you know that abouthim, you have to unite with the
people around you who deal withhim as well, and if you guys
aren't united, the shit's goingto continue going on.
We've basically shut out all thefamily.
(30:52):
We don't ask them for anything,we don't invite them to go
anywhere.
We're never doing that campingthing again that I told you.
We haven't even addressed it.
The grandpa asked about it butwe just didn't respond.
We're not ever, ever doing thatagain.
That was the last straw, thelast time that I needed to learn
the lesson that family doesn'tgive a fuck.
It's just the two of us, andI'm really happy that I quit my
(31:16):
job.
It wasn't making me that muchmoney anyway, and I would rather
have peace in my house and inmy heart and not be constantly
at war with my spouse about thiskid.
We are stuck together.
It's the three amigos all thetime, and my only real concern,
other than creating a peacefulhousehold again, is his
(31:37):
long-term future, long-term care, elder care, stuff like that.
I just I'm going to continuemessing around with this
internet marketing.
I'm not above starting like aPornhub page or something I
don't know.
Like a Pornhub page orsomething I don't know.
(32:00):
Whatever it takes to get moremoney to get this kid taken care
of in the future, I'm going todo it.
It's so important you guys, andthere are some special needs
planning groups out there onFacebook you can find but the
bottom line is it's very hard,especially when you're placed in
a position, like we are, that,look, we both need to be home,
(32:22):
one of us can get paid fortaking care of him and the other
one still has to be home allthe time and is really, unless
you, you know, unless you startmaking a lot of money on the
internet one way or another,you're just stuck in this below
poverty income level and you gotto make the best of it.
What we'd like to do is buy amotor home because we want to
(32:43):
enjoy our lives a little bit atleast, and we can't ever leave
our child with anyone anywhere.
So, whether he likes it or not,we would like to see at least
our country.
You know, I've hardly beenanywhere in this country.
My spouse has, as when he wasyounger, and he wants to take me
to see these beautiful placesand I want to go and I'm.
(33:03):
I don't want to be stuck inthis basement being miserable
taking care of this child wholives on a separate level of the
house.
It's just too hard and it's notfun.
So our son likes to sleep a lot.
Now he likes to.
He doesn't necessarily sleep,but he spends a lot of time in
the dark in his room and that'swhat he wants to do and I'm not
going to fight it.
I used to try to get him tocome out, but that's just,
that's his autism thing.
(33:24):
That's where his bubble is atand that's where he wants to be.
And, to tell you the truth,neither I nor my spouse have the
energy or focus to keep him asbusy as he needs to be kept in
order to not go into his autismbubble.
We're still at the end of ourropes, basically with helping
him with speech and occupationaltherapy, any kind of physical
(33:47):
stuff.
It's just, it's pulling teethand look, if no one in those
professions can help him, thenhe's just not going to get the
help, because it's all we can doto survive and keep him safe
and keep ourselves safe andhealthy.
So that's where we're at.
I do have a pretty cute littlestory.
Back in August we did go toDick's Sporting Goods.
We picked up another attempt atrecreation for our son and we
(34:09):
got a wiffle ball set.
His dad took him out in thebackyard and set up a little
stack of bricks and things toset the ball on top of.
We just wanted to get the ballup really high so that Jacob
could figure it out.
The eye-hand coordination isn'talways the greatest with sporty
type things.
Finally, he starts connectingthe bat with the ball and his
(34:31):
dad says well, hit one for daddyand then hit one for mommy.
He went through family membersin the household here and then
he said hit one for Uncle Toddand he's the one who has passed
away.
And he kept aiming at the whitewiffle ball.
The white wiffle ball was ontop of a bright green like a
neon green cup about the size ofa sippy cup.
It was inverted and then theball was sitting on top of that.
(34:52):
The cup was sitting on top of abunch of cinder blocks.
Okay so a stack of cinderblocks green cup, white ball,
black bat.
Our son is very color orientedso we had to tell him hit the
white ball, you know.
And he couldn't figure out whatto hit for a little while.
But finally he started aimingat the white ball for all of the
things Hit one for daddy, hitone for mommy, hit one for Uncle
(35:13):
Todd.
And then he said hit one forBatman.
And then he said you want tohit one for Uncle Todd?
And then he said hit one forBatman.
And then he said you want tohit one for Joker.
And instead of aiming at thewhite ball, jacob aimed directly
at the green cup and he hit thegreen cup and not the white
ball, and he associates thatcolor green with the Joker.
So I thought that was reallycute and pretty impressive.
(35:34):
You know, he didn't even thinkabout it.
He just said hit one for Joker.
And he said okay, and he justhe whacked that green cup all
the way across the yard and Ithought that was pretty
impressive.
That was a neat little decisionto watch him make, even though
the object is to hit the whiteball.
But you know, he made thatdecision just because he
associates that cup with theJoker.
(35:55):
So it's very cool to see howhis mind works at times like
that.
Okay, so, now that I am dead seton being more involved in my
podcast again, here's what'shappening in the next episode.
When did things start to godownhill?
And I really kind of want to doa deep dive into what I think
started to happen, in additionto the simple fact of him aging,
(36:19):
going through puberty and allthat stuff.
I hope that if you celebrateHalloween with your special
kiddo, I hope it's all fun andwonderful for you guys.
You hang in there, you're asuperhero.
Popular Podcasts
Las Culturistas with Matt Rogers and Bowen Yang
Ding dong! Join your culture consultants, Matt Rogers and Bowen Yang, on an unforgettable journey into the beating heart of CULTURE. Alongside sizzling special guests, they GET INTO the hottest pop-culture moments of the day and the formative cultural experiences that turned them into Culturistas. Produced by the Big Money Players Network and iHeartRadio.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
This is Gavin Newsom
I’m Gavin Newsom. And, it’s time to have a conversation. It’s time to have honest discussions with people that agree AND disagree with us. It's time to answer the hard questions and be open to criticism, and debate without demeaning or dehumanizing one other. I will be doing just that on my new podcast – inviting people on who I deeply disagree with to talk about the most pressing issues of the day and inviting listeners from around the country to join the conversation. THIS is Gavin Newsom.