October 1, 2025 • 27 mins
We face the change in the story since moving back to Illinois: the first sign of aggression that changed everything between us. We also share GeneSite results, ask about Leucovorin, weigh group homes vs “never,” and find a quiet win by the river.
• impact of the Illinois move on behavior and family strain
• the car attack as a turning point in safety and trust
• losing verbal leverage and rebuilding boundaries
• GeneSite insights, med tweaks, and timelines
• curiosity about Leucovorin and real-world outcomes
• cannabis dosing as a flexible regulation tool
• group homes vs institutions and future-proof care
• building respite networks and care continuity
• a small victory: silent connection and calm outdoors
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 00 (00:19):
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
Today, I want to start talkingabout and reliving,
unfortunately, the terribleevents that unfolded after we
moved back into Illinois withour son.
Please remember, if you wouldlike to support this podcast,
(00:41):
you can click the support thepodcast link and buy me a coffee
and buy me as many coffees asyou like.
That would really help me alot.
It helps me keep this show freefor those who need it.
So if these episodes touch youin any way, make you happy, sad,
angry, or otherwise, maybe youcould share them or start
talking about them somewhere andjust spread the word about my
(01:02):
podcast.
I know that my podcast is a lotdifferent than other podcasts
about autism and aboutparenting.
It's just a differentperspective and it's a lot
different than most people outthere.
So if you could share it, Iwould greatly appreciate it.
I'd also like to start off bysaying that these events that
began to take place after wemoved here are um they're they
(01:24):
were traumatic and it's hard forme to relive them.
So I think that I'll probablybe able to only cover one or two
at a time so that I don't putmyself into some deep dark hole.
The impact on our son of ourmove to Illinois from Wisconsin
was much harder than we hadanticipated.
Oh man, I really think it'spartly because we did not
(01:49):
understand how he was feeling inthe first place.
And that's not our fault.
He doesn't communicate and he'snot able.
It's not his choice.
It's he's just not able.
The only thing he ever didcommunicate to us is that he was
miserable constantly and hewanted us to be miserable as
well.
I guess when you see someoneday in and day out acting like
(02:11):
that and not paying attention toanything and losing interest in
everything he used to love, Idon't know.
For us, we just didn't reallybelieve that there would be much
of an impact except that hewould be near more family
members and maybe he would behappier because these family
members, the grandmother and thegrandfather, want to cuddle him
and coddle him and love on him24-7.
(02:34):
And obviously his dad and Idon't have time for that because
we're trying to make a livingand support him.
So we thought having morefamily around probably would be
great.
And if it weren't for theknowledge I have now about the
effects on siblings who areneurotypical, I would say that
it's best to have siblings forthe child as well.
(02:57):
Anyway, we tried to conditionhim, as you know, to get ready
to move here and move in withhis loving grandparents and all
that jazz.
And after we got here, you'veprobably gathered things got
much worse just by my storyabout the grocery store recently
and not being allowed toparticipate in theater.
And things got progressivelyworse in small steps, but also
(03:22):
very quickly.
As I mentioned before, myspouse and I were kind of in a
race to get employed, and helanded several jobs first before
I did.
They were all in sales, Ibelieve.
One of them required him to goout of town for a week for
training.
And I didn't think much of itat the time because I've been
taking care of this childforever.
(03:44):
His dad was rarely ever homeduring the worst parts of his
behaviors, and he was there inthe morning and then he was
there after he was in bed.
So, you know, I'm capable oftaking care of him for that
long.
I didn't have any problem withthis arrangement at all until he
attacked me in the car one day.
I had found out about thisspecial needs camp, and it's a I
(04:06):
love this camp for him, andI've mentioned it before how we
just all felt that he hadfinally found a place that would
understand him and accept him,and he knew he was in the right
place.
I could just tell by his bodylanguage and everything, and I
just cried about that.
It was so nice when we went andvisited that place.
I don't know how we found outabout it, but it was within the
first summer of us being here.
It might have been from one ofthe parents in the group that we
(04:30):
decided not to attend anymorebecause of our views offending
them.
But anyway, we did find it.
I was always looking forresources and trying to get him
set up with as much as I could.
So I'm driving him to this campin the morning after feeding
him a wonderful breakfast anddoing all the things that I
always do for him to make himhave a great day.
(04:52):
The camp is only about 20minutes away, and I'm driving
down the highway with him in thefront seat, and I'm not sure
why I put him in the front seat.
I always drove my truck and puthim in the back seat because he
was getting crazy with me, andit was easier to control him
back there because he couldn'tget out.
But for some reason I was inthe Jeep, he was in the front
(05:13):
seat next to me, and he, for noreason at all that I'm aware of,
jumped from his seat with bothhands and grabbed me by my neck
and started shaking me with atight grip on my neck.
This was the turning point inour relationship.
It breaks my heart to thinkback to this stuff because
things are different between usnow.
(05:34):
I mean, we're still when he'sbeing nice and loving, it's
great, but shit just ain't rightbetween us, and I'm sure that's
my fault because I remember,you know, and I'm hurt by it,
and I feel a little bit unsafearound him, you know.
I kind of panicked when he didthat.
I kind of slammed on the brakesand I started to pull over.
(05:57):
It was not as smooth as I wouldnormally have pulled over, but
I pulled over and I was just Ididn't know what to do.
Finally he let go of my neckand I said I was calling his dad
because those are the magicwords, right?
I mean, that's what we'vetaught everyone that's ever come
in contact with him this wholetime.
Call his dad.
(06:17):
Even just say that you're gonnacall his dad and he'll
straighten right up.
So I said, I'm calling your dadright now.
That was not nice.
You don't do that to me.
And the look on his face wasone that I hadn't ever seen
before.
He did not give a fuck if Icalled his dad or not.
And he didn't give a fuck thathe had just hurt me.
(06:42):
I was speaking to all of thethings that I know about this
child that cause a reaction inhim because he is empathetic
about these things and hedoesn't want to hurt people, and
he doesn't want his dad to bedisappointed in him or to have
to get on him for any reason atall.
And none of these things werehaving an effect on him, and I
(07:04):
didn't know what to do.
So I put on my best, strongest,scariest mom voice and scolded
him until I was blue in the facethe best that I could.
I scolded his ass and he didn'tcare.
And the whole time I was tryingto ring his dad on the phone,
and finally his dad answered thephone, and I told his dad what
happened, looking directly atour son and speaking to his dad
(07:28):
on speakerphone in the car, andour son didn't care.
His expression did not changeat all.
It was almost like he was justthinking, Oh yeah, just wait
till you hang up.
I'm gonna do it again.
I don't fucking care.
That's how he was acting.
That's what that was the lookon his face and in his eyes.
(07:49):
And I was just shocked, and Ididn't know how to react to that
because I f I realized in thatmoment that I no longer had an
effect on him.
I could no longer affect hisbehavior choices with words, and
I don't have anything else.
His dad listened and kind ofreprimanded him a little, but
(08:14):
honestly, his dad didn't scornhim as I had expected.
I really expected more backupand more reaction, and I don't
know.
Maybe he was in a badsituation, you know, maybe he
was in a classroom situation orsomething and he couldn't get on
his ass like that on the phone,but I expected something that
would penetrate into his brainand register that this was wrong
(08:39):
and your dad is mad at you.
And if your dad is mad at you,then you know it's wrong because
his dad is like, ah, you know,everything he does is perfect at
that time.
I didn't feel that I was gonnabe safe with him alone anymore.
So of course, knowing that Iwas gonna have to be alone with
him, I had to shake that off andreprogram myself as soon as
(09:00):
possible.
You know, it's fine, it was afluke, whatever.
But I mean, there was nothing Icould threaten him with.
Like, I'm not gonna take you tocamp.
Why would I do that?
I don't want to be around him.
I want him to get the fuck awayfrom me right now.
I want him to go to camp.
So I didn't have anything tothreaten him with.
I didn't have anything.
There was nothing.
He was going to make his ownchoices and be in complete
(09:21):
control of whatever he chose todo.
And there was just nothing thatI could do as a mommy at that
point.
It's just one adult againstanother, you know?
That really sucked.
And that was my firstexperience with him getting
violent and physical with me.
I never expected this.
Never.
And the only thing I couldthink was that he was angry that
(09:43):
we were here.
And I thought, I mean, I knewit would suck for me, but what
did he care?
All he never he didn't like hedidn't care about being outside.
He just didn't care aboutanything when we were up in
Wisconsin, and now we're we'rehere, and now he's lashing out,
and I'm like, well hell, maybethis indicates that he was
happier in Wisconsin.
(10:03):
Maybe he's mad.
I don't I don't know why.
I mean, yeah, it's not as niceor anything in the house, but
he's got more family, he's gotmore love.
I I don't know.
So this is how it started.
I'm gonna move on from thatright now into this gene sight
test that we had done.
So we did this gene sight testbecause he has been needing more
(10:26):
of everything, and themedicines aren't affecting him
like they used to, and he'sactually backsliding into the
dude he was before he becamemedicated.
I mean, he's not even close,but I'm seeing the behaviors
leading backwards the way theywere leading up to his behaviors
before.
So I'm a little uneasy, and Idid mention that to the doctor,
(10:48):
as you know, and she had us dothis gene site test.
I had them send me the fullreport, and I have not yet
called the company, but I mighttoday because I'm I'm really
curious.
But what I do understand atthis time is that the
Resperidone that he has been onis listed as it says uh the
serum may be too concentratedand may have to be reduced.
(11:12):
And the sertraline that he's onhas increased because the test
shows that it is less effectivethan usual because of his genes.
And the trazodone also islisted with a number, but it
hasn't changed.
So the only one that changed isthe doctor increased the
surtraline.
Then of course, that's gonnatake what six weeks before it
(11:36):
evens out and we see anydifferences, I guess.
This test also says that manyof the ADHD medicines are going
to be ineffective for him.
He's not on any, thankfully.
But I thought that wasinteresting and I wanted to
mention that to you.
In case your child is beingtreated for ADHD and you're not
experiencing results or you'reexperiencing adverse effects,
(12:00):
maybe check for this gene site.
Now, the thing about this genesite test, my spouse said this
to the doctor in the office.
He said, Well, it's weird thathe has had to be on this
medicine for several years andnow you're doing the test.
Wouldn't you do the test earlyand not make him deal with
things he can't deal with ifit's not right for him?
(12:22):
And she said, insurance won'talways cover the test until you
have a long track record ofusage.
That's how this test works.
It's called a gene site test.
And if your child has beentaking a specific medicine for
any amount of time, it mayqualify your child to receive
the gene site test covered byinsurance.
And then you might get to thebottom of some of the stuff.
(12:44):
So, speaking of these meds,what do we think about this
Leucovorin that is now approvedfor autism treatment?
I was looking into it.
I'm sure you guys already knowthis.
I guess some parents are sayingthat within months their
children are speaking when theywere nonverbal before and
they're putting togethermulti-sentences into paragraphs
(13:05):
and stuff.
I was just wondering if any ofyou guys are using this for your
children.
What are the effects thatyou've been noticing if you are
using it?
And also, what have you beentold by your doctors or your
child's doctor if you have askedabout getting the prescription?
I'm very interested in what'sgoing on out there with all of
you with this new availability.
(13:27):
I know there's the thing aboutTylenol.
I still, I mean, okay, youknow, I know that our son
received a shot, I think, in hisbutt.
It bruised him for many months.
Shortly after that shot is whenhe started getting noticed by
the family with autistic traits.
I was not around, obviously.
(13:47):
I'm I'm not the mommy, so Iwasn't here yet, but that's the
story that this familyexperienced.
Um, but Jacob has beenabsolutely terrible, apparently,
for a month or two, accordingto his dad.
I'm still out here at thecamper, um, just working on
myself.
His dad's having a really hardtime.
I didn't think that he wouldbecause the kid is on drugs now.
(14:08):
I mean, he's on so many drugs.
And the cannabis liquid, if hestarts, you know, getting more
agitated than he should, we canalter that with a little drop of
cannabis liquid and just changehis mood.
Sometimes he's stronger thanthe cannabis, sometimes he will
change his mood to be moreangry, which is really hard to
(14:29):
do on cannabis.
I really think it's a choice atthat point.
But guess what?
If that happens, you can givehim more and it won't hurt him.
And you might knock him out.
He might take a nap and wake upfeeling better in a little
while.
My spouse has been having areally hard time dealing with
our son.
So when I get back, I'm notsure what's going to transpire
(14:49):
with our son.
I don't understand why he's sobad.
The other thing I want tomention right now that's always
on my mind because our child isolder and we're older and you're
always kind of thinking aboutthe future.
How do you guys feel aboutgroup homes and are they
different from institutions?
(15:10):
Every several months we get avisit at home from a woman with
the insurance company for ourchild.
They're always asking the samequestions because he's now on
that what they call a puns listhere in Illinois.
They're always asking if hewants to take advantage of
things that will becomeavailable when his name is
(15:30):
pulled from the list, whichcould be five years or more.
I don't know.
For a while, I had been therewith my spouse during the
meetings, but I mean, obviously,I'm not there this summer, and
I'm a little bit worried becausemy spouse always declines the
offers.
And I keep trying to tell himit's you don't have to take it,
but I mean, you want to be opento it.
(15:51):
You'll never find anythingthat's available to help him if
you don't say that you're open.
If you shut it down, they'regonna mark the box that says no,
and then you'll never learnanything that's in that category
that becomes available for him.
The lady used to ask, Are youinterested in group home
placement?
And my spouse would always sayno.
(16:12):
And I would always pull heraside later and say, He's just
being emotional.
Yes, we are interested in grouphome information.
As long as that means we don'thave to use it, we don't have to
take it.
She says, No, you don't haveto.
I said, Then yes, we're alwaysgoing to be interested.
But just the other day, myspouse and I were talking about
(16:32):
something.
Every once in a while, he getsreally down, and I can't blame
him.
And he said to me, You know,there's nothing but hell in life
with me, right?
And I said, Why would you saythat?
You create your own reality.
He said, Yeah, but there's nofamily to help us take care of
Jacob, vehemently starts saying,I will not put him in an
institution.
He's never gonna go in aninstitution.
(16:53):
I'm gonna take care of himuntil the day I die, unless
there is something that comes upthat's awesome for him and
would really benefit him andmake him very happy.
I said, Well, of course, that'sthe idea.
I don't want to put him in aninstitution either, but I do
want to be notified about grouphomes that may be able to take
better care of him.
Maybe they can provide him withpeers, peer groups, friends,
(17:16):
conversations, education, thingsof interest.
Maybe he can develop hobbies orlearn some skills or get some
fucking speech therapy, youknow?
We can't provide any of thatfor him.
I think it's a very emotional,not well thought out plan to say
that you're going to take careof your child until the day that
(17:37):
you die.
Because then what?
Then what?
There's no answer for that, isthere?
No.
You need to get him establishedin that type of community
before you die.
Otherwise, what are you gonnado?
What are you gonna What's gonnahappen to him if you don't
start planning now?
(17:58):
That is a kind of an ongoingargument between us.
If any of you have informationabout planning elder care for
your disabled child with severeautism, I would like you to
reach out to me if possible.
There are one or two groupsthat I follow on Facebook about
this, and believe it or not, Ihaven't had time to look into
(18:20):
it.
It's hard when there's only oneresearch head in the family.
There's so much to research.
So I'm trying, I'm reallytrying hard to get this all
figured out, but it's not reallya team effort right now.
And if you have any informationthat you can help me with and
maybe I can help spread itaround to other families in
need, I would love that.
(18:41):
And you can reach out to me atcontact.parentingsevereautism at
gmail.com.
You can also drop me a fan mailmessage at PSA.
That's short for parentingsevere autism,
psa.buzzsprout.com.
And you can also leave me noteswhen you buy me coffees.
Anything that you can sharewith me would be greatly
(19:03):
appreciated because I do fretabout this a lot.
He's getting ready to be 25this year.
I just don't think it's ahealthy mindset to say that I
don't want to put my kidanywhere except with me because
the kid's going to outlive you.
And if you don't have somethingin place, then all of the
things that you did while youwere alive are for nothing
(19:23):
because he'll be flapping in thewind.
He might be homeless, he mightbe unloved, he might be untaken
care of, he might have no onelooking out for him, he might be
taken advantage of by a livingfamily member who doesn't care
about him and just wants hismoney and to make him do what
they want to do.
He might be abused.
You don't know.
You have to start now planningfor this stuff.
(19:46):
It's not a good practice tojust shut everything out.
You know, obviously I am tryingto build my respite community,
and I think it's a great model,and I think it should be
replicated everywhere to helpfamilies like ours.
And I think that thesecommunities should have group
homes near the property or onthe property so that when the
time comes, the child can gointo a place where every single
(20:09):
provider has been trained by theparents to take care of these
children.
There are speech therapists, OTtherapists, anyone and everyone
that could possibly help thesechildren.
I think that that would begreat.
But I don't know if it'llhappen in this lifetime, you
know.
I'm I'm I'm trying like hell,but I'm only one person and I
have no support in it.
So we have to think of otherways to take care of our kids.
(20:32):
So to anyone listening outthere whose children are older
than mine in their 30s or 40s,obviously you are older, and I
would like to know what you'redoing, how you're feeling about
it.
Do you have your child in aplacement?
Are you satisfied with thatplacement?
Are you nervous about yourchild's welfare in that
placement?
Or do you feel that it'shelping your child to live their
(20:55):
best life right now?
I would really like to knowbecause we're kind of lost with
this.
My spouse and our son came outhere just the other day to spend
the day with me.
I love it when they come.
I offer them to come out hereand enjoy the weather, but it
actually isn't fall yet, andneither of them enjoy being
super hot, and I don't either.
So we're waiting for the fallto come so we can all enjoy each
(21:16):
other outside and have firesand just do fun stuff.
Jacob doesn't sit at the firefor very long, but it still
would be a nice family thing.
When the weather comes, it'llbe great.
So anyway, they were here, andI noticed that his dad's getting
a little bit moreoverprotective, which is I
thought impossible.
I mean, he's pretty freakingoverprotective of him.
I'll remind you of the storiesof when we lived in Rockford and
(21:39):
my spouse would wake up andsay, Oh, I'm not letting him go
to school today.
And I would say, Why?
And he would say, Because it'swindy.
And I would just always acceptthat, like, uh, okay, you know,
because I'm not a mom.
I it was not my kid.
We were new to each other, andI thought, okay, that's his
dad's rule, whatever.
Fine.
But after many years of himdoing that, I finally said, you
(22:03):
know, the school has walls and aroof, right?
And he said, Yeah, I'm like,you know, the bus is enclosed.
He says, Yeah.
So then why don't you want himto go to school when it's windy?
He said, Because the bus mighttip over from the wind.
My mom loved me to death, but Inever, never heard her be that
(22:24):
paranoid.
But I mean, I get it.
And and I don't argue with it.
And he doesn't go to schoolanymore, anyways.
Anyhow, he was over here and hewas seeming a little
overprotective because the kidhe fed him like two dairy-free
ice cream bars in a row afterhaving fed him donuts before
that.
And I was like, oh yay, this isthis is great.
(22:44):
He also forgot to bring thechild's leftover pizza from the
night before.
This is a routine, and you knowhow that goes.
He's been having this routinefor years.
He has pizza on Saturday night,he has leftover pizza on Sunday
afternoon.
So I was pretty nervous, youknow, all this sugar in him and
gluten-free donuts, of course.
And no access to his routinepizza for lunch.
(23:06):
Yikes.
I didn't know how that wasgonna go over, but I gave him a
little extra cannabis medicinewhen I could see that he was
getting a little bit weird, andthen he evened out again and he
was getting pretty hyper.
And this is a small camper, itdoesn't have a pop-out or
anything, it's very small.
So I said, Would you like to gooutside?
And then he said yes.
And his dad looked at him andsaid, No.
I said, No.
(23:27):
Why?
He's like, it's hot.
Like it's September and it'slike 84 and there's no humidity.
It's fine.
There's shade on my patio.
He he could sit in the shade.
He likes that.
And he's like, Well, do youwant to go outside?
He's like, Yeah, I want to gooutside.
And so he says, Okay.
So I let him know I can see youthrough all the windows.
I'm gonna leave this door openso I can see you through the
(23:48):
screen.
You'll be safe.
And of course, we're alwaysafraid that he's gonna run.
And he was not wearing his GPS.
But if he runs out here, I canI mean, I'm not afraid of losing
him like I am in theneighborhood.
I wasn't too nervous, but Icouldn't fully relax either.
But he sat outside and he just,you could tell he just wanted
to be by himself.
(24:08):
He's 24.
He needs man space.
He can't be up his dad's assall day.
I mean, he wants to be, butreally does he?
Because when you give him thefreedom to just go and be by
himself, he just sits there.
He was sitting there, lookingat the river, watching the
birds, commenting, oh, look atthat, when he would see a fast
jet ski go by, and we gave himthe binoculars.
(24:29):
It was really cute.
And eventually he wanted tocome back in.
I think his dad maybe purposelysabotaged.
This is kind of funny.
Um, I had been checking on himthrough the windows, and I could
see him just fine.
And his dad jumps up, he'slike, I want to check on him.
Said, Well, look through thewindows so you don't disturb
him.
And he pretended he couldn'tsee him through the windows.
But he's bigger than me and Icould see him.
So he goes over by the door.
(24:50):
And of course, now he's gonnaget weird.
Now that he knows we're payingattention to him and we kind of
jarred him out of his littledays that he was in.
So yeah, within about fiveminutes after he sees his dad
check on him and ask him if he'sokay and all that shit, he
says, Oh, I'll come inside.
He I think he said the bugs,bugs are eating him.
I got him inside, I set him upon the pullout couch here and
(25:13):
let him lay down.
And then after a while, he wasstill up and I had to have some
lunch, and he had already had abunch of food.
So he was just staring at theceiling and with a fake smile on
his face.
He reminds me of like a dog atthe kennel inside the cage
waiting to get chosen.
He just sits there and pastesthis really weird smile on his
face and stares up at the top ofthe wall.
(25:35):
He did that the whole time Iwas eating.
So when I was done eating, Iasked him, You want to look out
the window with me?
So I raised up the big blind onthe back of it here, and I
showed him that you could seeall the trees and the blue sky
and the birds, and he loved it.
And we sat here together whilehis dad took a little nap on the
bed behind us, and we just sathere for about 45 minutes
(25:56):
silently watching the trees.
It was awesome.
It was so cool.
That's my only story about himthis week, but I thought it was
a good one.
He was really nice.
He didn't get crazy about nothaving his pizza.
He was just super cool, and wereally enjoyed each other's
company, just sitting next toeach other in separate areas in
(26:16):
silence.
That's something that he neverwould have been able to do
before.
But with the help of thepharmaceuticals and the
cannabis, I think every once ina while we can enjoy some peace
together.
In my next episode, I will tellyou another story about our
summer, our first summer backhere in Illinois.
And if any of you have anystories for me to share about
(26:36):
the Lucavorin or group homes oranything like that, even if you
don't want me to share it, ifyou can just share with me so I
can have the information andbegin my search for help for the
future, I would reallyappreciate it.
And if your child has beencrazy for the last four weeks or
so, that was again, we wentthrough eclipse season during
September.
(26:57):
And it should be winding downwithin the next couple of days.
So during that time this year,I instructed his dad to increase
his cannabis dosage by one moretime a day and another half a
dose.
So a dose and a half threetimes a day instead of one dose
two times a day, because Iremember how he was last year
(27:19):
and it was a nightmare.
So um, I don't know if ithelped or not.
His dad says that he's justbeen awful forever, and I don't
I don't know.
I I don't know.
Thank you again for sharing myepisodes and talking me up out
there.
I really appreciate it.
I have been getting more peoplecoming to download my episodes,
and I'm so grateful.
(27:39):
And I'm out of time for today.
Hang in there.
You're a superhero.
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
Today, I want to start talkingabout and reliving,
unfortunately, the terribleevents that unfolded after we
moved back into Illinois withour son.
Please remember, if you wouldlike to support this podcast,
(00:41):
you can click the support thepodcast link and buy me a coffee
and buy me as many coffees asyou like.
That would really help me alot.
It helps me keep this show freefor those who need it.
So if these episodes touch youin any way, make you happy, sad,
angry, or otherwise, maybe youcould share them or start
talking about them somewhere andjust spread the word about my
(01:02):
podcast.
I know that my podcast is a lotdifferent than other podcasts
about autism and aboutparenting.
It's just a differentperspective and it's a lot
different than most people outthere.
So if you could share it, Iwould greatly appreciate it.
I'd also like to start off bysaying that these events that
began to take place after wemoved here are um they're they
(01:24):
were traumatic and it's hard forme to relive them.
So I think that I'll probablybe able to only cover one or two
at a time so that I don't putmyself into some deep dark hole.
The impact on our son of ourmove to Illinois from Wisconsin
was much harder than we hadanticipated.
Oh man, I really think it'spartly because we did not
(01:49):
understand how he was feeling inthe first place.
And that's not our fault.
He doesn't communicate and he'snot able.
It's not his choice.
It's he's just not able.
The only thing he ever didcommunicate to us is that he was
miserable constantly and hewanted us to be miserable as
well.
I guess when you see someoneday in and day out acting like
(02:11):
that and not paying attention toanything and losing interest in
everything he used to love, Idon't know.
For us, we just didn't reallybelieve that there would be much
of an impact except that hewould be near more family
members and maybe he would behappier because these family
members, the grandmother and thegrandfather, want to cuddle him
and coddle him and love on him24-7.
(02:34):
And obviously his dad and Idon't have time for that because
we're trying to make a livingand support him.
So we thought having morefamily around probably would be
great.
And if it weren't for theknowledge I have now about the
effects on siblings who areneurotypical, I would say that
it's best to have siblings forthe child as well.
(02:57):
Anyway, we tried to conditionhim, as you know, to get ready
to move here and move in withhis loving grandparents and all
that jazz.
And after we got here, you'veprobably gathered things got
much worse just by my storyabout the grocery store recently
and not being allowed toparticipate in theater.
And things got progressivelyworse in small steps, but also
(03:22):
very quickly.
As I mentioned before, myspouse and I were kind of in a
race to get employed, and helanded several jobs first before
I did.
They were all in sales, Ibelieve.
One of them required him to goout of town for a week for
training.
And I didn't think much of itat the time because I've been
taking care of this childforever.
(03:44):
His dad was rarely ever homeduring the worst parts of his
behaviors, and he was there inthe morning and then he was
there after he was in bed.
So, you know, I'm capable oftaking care of him for that
long.
I didn't have any problem withthis arrangement at all until he
attacked me in the car one day.
I had found out about thisspecial needs camp, and it's a I
(04:06):
love this camp for him, andI've mentioned it before how we
just all felt that he hadfinally found a place that would
understand him and accept him,and he knew he was in the right
place.
I could just tell by his bodylanguage and everything, and I
just cried about that.
It was so nice when we went andvisited that place.
I don't know how we found outabout it, but it was within the
first summer of us being here.
It might have been from one ofthe parents in the group that we
(04:30):
decided not to attend anymorebecause of our views offending
them.
But anyway, we did find it.
I was always looking forresources and trying to get him
set up with as much as I could.
So I'm driving him to this campin the morning after feeding
him a wonderful breakfast anddoing all the things that I
always do for him to make himhave a great day.
(04:52):
The camp is only about 20minutes away, and I'm driving
down the highway with him in thefront seat, and I'm not sure
why I put him in the front seat.
I always drove my truck and puthim in the back seat because he
was getting crazy with me, andit was easier to control him
back there because he couldn'tget out.
But for some reason I was inthe Jeep, he was in the front
(05:13):
seat next to me, and he, for noreason at all that I'm aware of,
jumped from his seat with bothhands and grabbed me by my neck
and started shaking me with atight grip on my neck.
This was the turning point inour relationship.
It breaks my heart to thinkback to this stuff because
things are different between usnow.
(05:34):
I mean, we're still when he'sbeing nice and loving, it's
great, but shit just ain't rightbetween us, and I'm sure that's
my fault because I remember,you know, and I'm hurt by it,
and I feel a little bit unsafearound him, you know.
I kind of panicked when he didthat.
I kind of slammed on the brakesand I started to pull over.
(05:57):
It was not as smooth as I wouldnormally have pulled over, but
I pulled over and I was just Ididn't know what to do.
Finally he let go of my neckand I said I was calling his dad
because those are the magicwords, right?
I mean, that's what we'vetaught everyone that's ever come
in contact with him this wholetime.
Call his dad.
(06:17):
Even just say that you're gonnacall his dad and he'll
straighten right up.
So I said, I'm calling your dadright now.
That was not nice.
You don't do that to me.
And the look on his face wasone that I hadn't ever seen
before.
He did not give a fuck if Icalled his dad or not.
And he didn't give a fuck thathe had just hurt me.
(06:42):
I was speaking to all of thethings that I know about this
child that cause a reaction inhim because he is empathetic
about these things and hedoesn't want to hurt people, and
he doesn't want his dad to bedisappointed in him or to have
to get on him for any reason atall.
And none of these things werehaving an effect on him, and I
(07:04):
didn't know what to do.
So I put on my best, strongest,scariest mom voice and scolded
him until I was blue in the facethe best that I could.
I scolded his ass and he didn'tcare.
And the whole time I was tryingto ring his dad on the phone,
and finally his dad answered thephone, and I told his dad what
happened, looking directly atour son and speaking to his dad
(07:28):
on speakerphone in the car, andour son didn't care.
His expression did not changeat all.
It was almost like he was justthinking, Oh yeah, just wait
till you hang up.
I'm gonna do it again.
I don't fucking care.
That's how he was acting.
That's what that was the lookon his face and in his eyes.
(07:49):
And I was just shocked, and Ididn't know how to react to that
because I f I realized in thatmoment that I no longer had an
effect on him.
I could no longer affect hisbehavior choices with words, and
I don't have anything else.
His dad listened and kind ofreprimanded him a little, but
(08:14):
honestly, his dad didn't scornhim as I had expected.
I really expected more backupand more reaction, and I don't
know.
Maybe he was in a badsituation, you know, maybe he
was in a classroom situation orsomething and he couldn't get on
his ass like that on the phone,but I expected something that
would penetrate into his brainand register that this was wrong
(08:39):
and your dad is mad at you.
And if your dad is mad at you,then you know it's wrong because
his dad is like, ah, you know,everything he does is perfect at
that time.
I didn't feel that I was gonnabe safe with him alone anymore.
So of course, knowing that Iwas gonna have to be alone with
him, I had to shake that off andreprogram myself as soon as
(09:00):
possible.
You know, it's fine, it was afluke, whatever.
But I mean, there was nothing Icould threaten him with.
Like, I'm not gonna take you tocamp.
Why would I do that?
I don't want to be around him.
I want him to get the fuck awayfrom me right now.
I want him to go to camp.
So I didn't have anything tothreaten him with.
I didn't have anything.
There was nothing.
He was going to make his ownchoices and be in complete
(09:21):
control of whatever he chose todo.
And there was just nothing thatI could do as a mommy at that
point.
It's just one adult againstanother, you know?
That really sucked.
And that was my firstexperience with him getting
violent and physical with me.
I never expected this.
Never.
And the only thing I couldthink was that he was angry that
(09:43):
we were here.
And I thought, I mean, I knewit would suck for me, but what
did he care?
All he never he didn't like hedidn't care about being outside.
He just didn't care aboutanything when we were up in
Wisconsin, and now we're we'rehere, and now he's lashing out,
and I'm like, well hell, maybethis indicates that he was
happier in Wisconsin.
(10:03):
Maybe he's mad.
I don't I don't know why.
I mean, yeah, it's not as niceor anything in the house, but
he's got more family, he's gotmore love.
I I don't know.
So this is how it started.
I'm gonna move on from thatright now into this gene sight
test that we had done.
So we did this gene sight testbecause he has been needing more
(10:26):
of everything, and themedicines aren't affecting him
like they used to, and he'sactually backsliding into the
dude he was before he becamemedicated.
I mean, he's not even close,but I'm seeing the behaviors
leading backwards the way theywere leading up to his behaviors
before.
So I'm a little uneasy, and Idid mention that to the doctor,
(10:48):
as you know, and she had us dothis gene site test.
I had them send me the fullreport, and I have not yet
called the company, but I mighttoday because I'm I'm really
curious.
But what I do understand atthis time is that the
Resperidone that he has been onis listed as it says uh the
serum may be too concentratedand may have to be reduced.
(11:12):
And the sertraline that he's onhas increased because the test
shows that it is less effectivethan usual because of his genes.
And the trazodone also islisted with a number, but it
hasn't changed.
So the only one that changed isthe doctor increased the
surtraline.
Then of course, that's gonnatake what six weeks before it
(11:36):
evens out and we see anydifferences, I guess.
This test also says that manyof the ADHD medicines are going
to be ineffective for him.
He's not on any, thankfully.
But I thought that wasinteresting and I wanted to
mention that to you.
In case your child is beingtreated for ADHD and you're not
experiencing results or you'reexperiencing adverse effects,
(12:00):
maybe check for this gene site.
Now, the thing about this genesite test, my spouse said this
to the doctor in the office.
He said, Well, it's weird thathe has had to be on this
medicine for several years andnow you're doing the test.
Wouldn't you do the test earlyand not make him deal with
things he can't deal with ifit's not right for him?
(12:22):
And she said, insurance won'talways cover the test until you
have a long track record ofusage.
That's how this test works.
It's called a gene site test.
And if your child has beentaking a specific medicine for
any amount of time, it mayqualify your child to receive
the gene site test covered byinsurance.
And then you might get to thebottom of some of the stuff.
(12:44):
So, speaking of these meds,what do we think about this
Leucovorin that is now approvedfor autism treatment?
I was looking into it.
I'm sure you guys already knowthis.
I guess some parents are sayingthat within months their
children are speaking when theywere nonverbal before and
they're putting togethermulti-sentences into paragraphs
(13:05):
and stuff.
I was just wondering if any ofyou guys are using this for your
children.
What are the effects thatyou've been noticing if you are
using it?
And also, what have you beentold by your doctors or your
child's doctor if you have askedabout getting the prescription?
I'm very interested in what'sgoing on out there with all of
you with this new availability.
(13:27):
I know there's the thing aboutTylenol.
I still, I mean, okay, youknow, I know that our son
received a shot, I think, in hisbutt.
It bruised him for many months.
Shortly after that shot is whenhe started getting noticed by
the family with autistic traits.
I was not around, obviously.
(13:47):
I'm I'm not the mommy, so Iwasn't here yet, but that's the
story that this familyexperienced.
Um, but Jacob has beenabsolutely terrible, apparently,
for a month or two, accordingto his dad.
I'm still out here at thecamper, um, just working on
myself.
His dad's having a really hardtime.
I didn't think that he wouldbecause the kid is on drugs now.
(14:08):
I mean, he's on so many drugs.
And the cannabis liquid, if hestarts, you know, getting more
agitated than he should, we canalter that with a little drop of
cannabis liquid and just changehis mood.
Sometimes he's stronger thanthe cannabis, sometimes he will
change his mood to be moreangry, which is really hard to
(14:29):
do on cannabis.
I really think it's a choice atthat point.
But guess what?
If that happens, you can givehim more and it won't hurt him.
And you might knock him out.
He might take a nap and wake upfeeling better in a little
while.
My spouse has been having areally hard time dealing with
our son.
So when I get back, I'm notsure what's going to transpire
(14:49):
with our son.
I don't understand why he's sobad.
The other thing I want tomention right now that's always
on my mind because our child isolder and we're older and you're
always kind of thinking aboutthe future.
How do you guys feel aboutgroup homes and are they
different from institutions?
(15:10):
Every several months we get avisit at home from a woman with
the insurance company for ourchild.
They're always asking the samequestions because he's now on
that what they call a puns listhere in Illinois.
They're always asking if hewants to take advantage of
things that will becomeavailable when his name is
(15:30):
pulled from the list, whichcould be five years or more.
I don't know.
For a while, I had been therewith my spouse during the
meetings, but I mean, obviously,I'm not there this summer, and
I'm a little bit worried becausemy spouse always declines the
offers.
And I keep trying to tell himit's you don't have to take it,
but I mean, you want to be opento it.
(15:51):
You'll never find anythingthat's available to help him if
you don't say that you're open.
If you shut it down, they'regonna mark the box that says no,
and then you'll never learnanything that's in that category
that becomes available for him.
The lady used to ask, Are youinterested in group home
placement?
And my spouse would always sayno.
(16:12):
And I would always pull heraside later and say, He's just
being emotional.
Yes, we are interested in grouphome information.
As long as that means we don'thave to use it, we don't have to
take it.
She says, No, you don't haveto.
I said, Then yes, we're alwaysgoing to be interested.
But just the other day, myspouse and I were talking about
(16:32):
something.
Every once in a while, he getsreally down, and I can't blame
him.
And he said to me, You know,there's nothing but hell in life
with me, right?
And I said, Why would you saythat?
You create your own reality.
He said, Yeah, but there's nofamily to help us take care of
Jacob, vehemently starts saying,I will not put him in an
institution.
He's never gonna go in aninstitution.
(16:53):
I'm gonna take care of himuntil the day I die, unless
there is something that comes upthat's awesome for him and
would really benefit him andmake him very happy.
I said, Well, of course, that'sthe idea.
I don't want to put him in aninstitution either, but I do
want to be notified about grouphomes that may be able to take
better care of him.
Maybe they can provide him withpeers, peer groups, friends,
(17:16):
conversations, education, thingsof interest.
Maybe he can develop hobbies orlearn some skills or get some
fucking speech therapy, youknow?
We can't provide any of thatfor him.
I think it's a very emotional,not well thought out plan to say
that you're going to take careof your child until the day that
(17:37):
you die.
Because then what?
Then what?
There's no answer for that, isthere?
No.
You need to get him establishedin that type of community
before you die.
Otherwise, what are you gonnado?
What are you gonna What's gonnahappen to him if you don't
start planning now?
(17:58):
That is a kind of an ongoingargument between us.
If any of you have informationabout planning elder care for
your disabled child with severeautism, I would like you to
reach out to me if possible.
There are one or two groupsthat I follow on Facebook about
this, and believe it or not, Ihaven't had time to look into
(18:20):
it.
It's hard when there's only oneresearch head in the family.
There's so much to research.
So I'm trying, I'm reallytrying hard to get this all
figured out, but it's not reallya team effort right now.
And if you have any informationthat you can help me with and
maybe I can help spread itaround to other families in
need, I would love that.
(18:41):
And you can reach out to me atcontact.parentingsevereautism at
gmail.com.
You can also drop me a fan mailmessage at PSA.
That's short for parentingsevere autism,
psa.buzzsprout.com.
And you can also leave me noteswhen you buy me coffees.
Anything that you can sharewith me would be greatly
(19:03):
appreciated because I do fretabout this a lot.
He's getting ready to be 25this year.
I just don't think it's ahealthy mindset to say that I
don't want to put my kidanywhere except with me because
the kid's going to outlive you.
And if you don't have somethingin place, then all of the
things that you did while youwere alive are for nothing
(19:23):
because he'll be flapping in thewind.
He might be homeless, he mightbe unloved, he might be untaken
care of, he might have no onelooking out for him, he might be
taken advantage of by a livingfamily member who doesn't care
about him and just wants hismoney and to make him do what
they want to do.
He might be abused.
You don't know.
You have to start now planningfor this stuff.
(19:46):
It's not a good practice tojust shut everything out.
You know, obviously I am tryingto build my respite community,
and I think it's a great model,and I think it should be
replicated everywhere to helpfamilies like ours.
And I think that thesecommunities should have group
homes near the property or onthe property so that when the
time comes, the child can gointo a place where every single
(20:09):
provider has been trained by theparents to take care of these
children.
There are speech therapists, OTtherapists, anyone and everyone
that could possibly help thesechildren.
I think that that would begreat.
But I don't know if it'llhappen in this lifetime, you
know.
I'm I'm I'm trying like hell,but I'm only one person and I
have no support in it.
So we have to think of otherways to take care of our kids.
(20:32):
So to anyone listening outthere whose children are older
than mine in their 30s or 40s,obviously you are older, and I
would like to know what you'redoing, how you're feeling about
it.
Do you have your child in aplacement?
Are you satisfied with thatplacement?
Are you nervous about yourchild's welfare in that
placement?
Or do you feel that it'shelping your child to live their
(20:55):
best life right now?
I would really like to knowbecause we're kind of lost with
this.
My spouse and our son came outhere just the other day to spend
the day with me.
I love it when they come.
I offer them to come out hereand enjoy the weather, but it
actually isn't fall yet, andneither of them enjoy being
super hot, and I don't either.
So we're waiting for the fallto come so we can all enjoy each
(21:16):
other outside and have firesand just do fun stuff.
Jacob doesn't sit at the firefor very long, but it still
would be a nice family thing.
When the weather comes, it'llbe great.
So anyway, they were here, andI noticed that his dad's getting
a little bit moreoverprotective, which is I
thought impossible.
I mean, he's pretty freakingoverprotective of him.
I'll remind you of the storiesof when we lived in Rockford and
(21:39):
my spouse would wake up andsay, Oh, I'm not letting him go
to school today.
And I would say, Why?
And he would say, Because it'swindy.
And I would just always acceptthat, like, uh, okay, you know,
because I'm not a mom.
I it was not my kid.
We were new to each other, andI thought, okay, that's his
dad's rule, whatever.
Fine.
But after many years of himdoing that, I finally said, you
(22:03):
know, the school has walls and aroof, right?
And he said, Yeah, I'm like,you know, the bus is enclosed.
He says, Yeah.
So then why don't you want himto go to school when it's windy?
He said, Because the bus mighttip over from the wind.
My mom loved me to death, but Inever, never heard her be that
(22:24):
paranoid.
But I mean, I get it.
And and I don't argue with it.
And he doesn't go to schoolanymore, anyways.
Anyhow, he was over here and hewas seeming a little
overprotective because the kidhe fed him like two dairy-free
ice cream bars in a row afterhaving fed him donuts before
that.
And I was like, oh yay, this isthis is great.
(22:44):
He also forgot to bring thechild's leftover pizza from the
night before.
This is a routine, and you knowhow that goes.
He's been having this routinefor years.
He has pizza on Saturday night,he has leftover pizza on Sunday
afternoon.
So I was pretty nervous, youknow, all this sugar in him and
gluten-free donuts, of course.
And no access to his routinepizza for lunch.
(23:06):
Yikes.
I didn't know how that wasgonna go over, but I gave him a
little extra cannabis medicinewhen I could see that he was
getting a little bit weird, andthen he evened out again and he
was getting pretty hyper.
And this is a small camper, itdoesn't have a pop-out or
anything, it's very small.
So I said, Would you like to gooutside?
And then he said yes.
And his dad looked at him andsaid, No.
I said, No.
(23:27):
Why?
He's like, it's hot.
Like it's September and it'slike 84 and there's no humidity.
It's fine.
There's shade on my patio.
He he could sit in the shade.
He likes that.
And he's like, Well, do youwant to go outside?
He's like, Yeah, I want to gooutside.
And so he says, Okay.
So I let him know I can see youthrough all the windows.
I'm gonna leave this door openso I can see you through the
(23:48):
screen.
You'll be safe.
And of course, we're alwaysafraid that he's gonna run.
And he was not wearing his GPS.
But if he runs out here, I canI mean, I'm not afraid of losing
him like I am in theneighborhood.
I wasn't too nervous, but Icouldn't fully relax either.
But he sat outside and he just,you could tell he just wanted
to be by himself.
(24:08):
He's 24.
He needs man space.
He can't be up his dad's assall day.
I mean, he wants to be, butreally does he?
Because when you give him thefreedom to just go and be by
himself, he just sits there.
He was sitting there, lookingat the river, watching the
birds, commenting, oh, look atthat, when he would see a fast
jet ski go by, and we gave himthe binoculars.
(24:29):
It was really cute.
And eventually he wanted tocome back in.
I think his dad maybe purposelysabotaged.
This is kind of funny.
Um, I had been checking on himthrough the windows, and I could
see him just fine.
And his dad jumps up, he'slike, I want to check on him.
Said, Well, look through thewindows so you don't disturb
him.
And he pretended he couldn'tsee him through the windows.
But he's bigger than me and Icould see him.
So he goes over by the door.
(24:50):
And of course, now he's gonnaget weird.
Now that he knows we're payingattention to him and we kind of
jarred him out of his littledays that he was in.
So yeah, within about fiveminutes after he sees his dad
check on him and ask him if he'sokay and all that shit, he
says, Oh, I'll come inside.
He I think he said the bugs,bugs are eating him.
I got him inside, I set him upon the pullout couch here and
(25:13):
let him lay down.
And then after a while, he wasstill up and I had to have some
lunch, and he had already had abunch of food.
So he was just staring at theceiling and with a fake smile on
his face.
He reminds me of like a dog atthe kennel inside the cage
waiting to get chosen.
He just sits there and pastesthis really weird smile on his
face and stares up at the top ofthe wall.
(25:35):
He did that the whole time Iwas eating.
So when I was done eating, Iasked him, You want to look out
the window with me?
So I raised up the big blind onthe back of it here, and I
showed him that you could seeall the trees and the blue sky
and the birds, and he loved it.
And we sat here together whilehis dad took a little nap on the
bed behind us, and we just sathere for about 45 minutes
(25:56):
silently watching the trees.
It was awesome.
It was so cool.
That's my only story about himthis week, but I thought it was
a good one.
He was really nice.
He didn't get crazy about nothaving his pizza.
He was just super cool, and wereally enjoyed each other's
company, just sitting next toeach other in separate areas in
(26:16):
silence.
That's something that he neverwould have been able to do
before.
But with the help of thepharmaceuticals and the
cannabis, I think every once ina while we can enjoy some peace
together.
In my next episode, I will tellyou another story about our
summer, our first summer backhere in Illinois.
And if any of you have anystories for me to share about
(26:36):
the Lucavorin or group homes oranything like that, even if you
don't want me to share it, ifyou can just share with me so I
can have the information andbegin my search for help for the
future, I would reallyappreciate it.
And if your child has beencrazy for the last four weeks or
so, that was again, we wentthrough eclipse season during
September.
(26:57):
And it should be winding downwithin the next couple of days.
So during that time this year,I instructed his dad to increase
his cannabis dosage by one moretime a day and another half a
dose.
So a dose and a half threetimes a day instead of one dose
two times a day, because Iremember how he was last year
(27:19):
and it was a nightmare.
So um, I don't know if ithelped or not.
His dad says that he's justbeen awful forever, and I don't
I don't know.
I I don't know.
Thank you again for sharing myepisodes and talking me up out
there.
I really appreciate it.
I have been getting more peoplecoming to download my episodes,
and I'm so grateful.
(27:39):
And I'm out of time for today.
Hang in there.
You're a superhero.
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