September 10, 2025 • 23 mins
Moving to Illinois with our severely autistic son brought unexpected challenges, including his increasingly violent behavior and our struggle to find appropriate medical and community support. Rejection has become an abnormally normal occurrence, but this is where it started.
• Our son developed concerning rage behaviors in public
• Housing search
• Parent support group silence
• Theatre program
• Despite rejections, our son continues to show creativity and new skills
• We're exploring disc golf as a new family activity
• Looking for positive recreational activities remains an ongoing challenge
If you'd like to share your own experiences or what activities your child enjoys, email me at contactparentingsevereautism@gmail.com. Support the podcast through the "buy me a coffee" link on your player or check out merchandise at psabuzzsprout.com.
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Email: contact.parentingsevereautism@gmail.com
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Shannon Chamberlin (00:18):
Hello and welcome to the Parenting Severe
Autism Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
This podcast is gainingtraction and I want to thank you
so much for sharing my episodesand sharing the information
contained within my episodes.
And if you're a new listener,please remember you can always
(00:38):
support the podcast to help mekeep it free for those who need
it.
If you click the support theshow icon on your player, you
should be able to go right tothe buy me a coffee section, and
that would be greatlyappreciated.
You can also check out mymerchandise it's just little
fanfare things that I haveavailable and you can follow my
links on my main hosting page,which is PSA short for Parenting
(01:03):
Severe Autism psa.
buzzsprout.
com And at the end of every showyou should be able to find my
show notes and links to all thedifferent ways that you can
support the podcast.
Most importantly, just keeplistening and keep sharing and
keep hoping for solutions andoptions for better lifestyles
for all of us.
I'm just being very random inthis episode about little things
(01:27):
that have come to my mind whilethinking about what I want to
tell you next, so bear with me.
When we moved to Illinois, Wewere looking for recreation, you
know, just some way to burn offenergy, because we had an
outdoor lifestyle in Wisconsinand that really doesn't exist
here, and we wanted to stayactive.
We were at Goodwill and myspouse found some tennis rackets
(01:51):
.
So that became our new hobbyand we picked up a basketball
for our son, because at thetennis courts right by our house
there are also a handful ofbasketball courts.
So we thought, yeah, there wego, he can just play with that.
It's right next to the tenniscourts and we'll all have a good
time.
We thought it would be great.
So we're at the tennis courts,and this was before the medical
(02:14):
cannabis came into the picture.
We had never played tennisbefore, so we were learning and
this became the norm.
We persevered, we kept doing it, no matter what, and we did it
for like two years and wetortured ourselves with this all
the time.
I mean, tennis was like a dailything for us and we always
dragged our son along because wedidn't want anyone else to have
(02:36):
to deal with him, but also wewanted to make sure that he was
getting treated the way that wewanted him to be treated, and
I'll get into that another time.
But we're at the tennis courtsand we're trying to play and
he's right behind us in thebasketball court and it's a
chain link fence.
We can see each other, hear eachother, everything, and all he
would do was scream like a big,bellow, deep scream, and just go
(02:59):
and he would have thebasketball way above his head
and then slam it down on theground.
I mean, he was like Hulk orsomething.
It was really insane.
And these were the fits of ragethat first started coming out.
They're different than what Isaw in Wisconsin.
He would still scream, but itwas more blood curdling or more
(03:24):
from a horror movie.
This was more I don't know, itwas just more base.
It was scarier.
He was very, very angry andviolent sounding.
This was what he would do allthe time.
This is you know, of course.
Yes, we started going to doctorsright away, as soon as we got
here as well, and that was hell.
As you know, I mentioned thehell we had with doctors around
(03:46):
here saying that they wouldn'thelp us with meds or anything.
I mean, this was you know.
We wanted to wait until he was18 or so before we got him on
meds, but this behavior actuallymoved that timeline up a little
bit for us as far as startingto seek meds.
So, yes, we weren't allowinghim to just be this way and not
try to get him treated, you know, especially when we realized
(04:07):
that cannabis was not an option.
And then we're like, well, whatare we supposed to do, Right?
Well, you know what I did.
We were still trying to figureit all out and we would take him
to the tennis courts and hewould never, ever let us enjoy a
game, but we brought him allthe time anyway, unless he was
actually asleep at the house orsomething, and there was someone
to make sure he was okay Around.
That same time, I think, is whenhe started to try to destroy
(04:31):
the baby monitor.
He was so out of hand and sodark and beginning to become
abusive to everything, and Iwanted to know what was going on
.
I wanted to know he was safe,because he wasn't just down the
hall from my room anymore and Ithink he started trying to
figure out how to destroy itbecause we had a lot of problems
(04:51):
with it.
Things got so bad with him thatwhen we started looking at
houses shortly after we got here, I didn't want any house that
would not allow him to be in aseparate area from me.
So my dream home actually hasseparate living quarters
attached, but like, if you see,like two of the like round
(05:13):
structure rooms, one on each endof the house and then the main
house in the middle.
That's what I imagine Like.
He needs his own man area wherehe has maybe even a kitchenette
a safe one for him that hecan't burn himself, catch
himself on fire or anything likethat but a kitchenette of just
a bachelor pad kind of thing inthe same house, because I just I
(05:35):
couldn't deal with him.
I couldn't stand to be aroundhim and he clearly couldn't
stand to be around us and weneed to take care of him and
there's no other option.
So he has to have a separatewing of the house and that would
actually make my nervous systemcalm down a little bit.
I seriously cannot live withthis child, you know, and he's a
grown-ass man.
(05:56):
It's always got me up in arms.
Another thing about when wemoved here is we were kind of
racing to find jobs and our sonwas not yet of the age where we
could get paid to take care ofhim.
You have to wait until he's 18for that.
It was kind of like whoevergets a job first is going to be
the working parent and then theother will stay home.
(06:17):
So my spouse was looking forfull-time work in sales
management or executive position, which he is completely
qualified for at the time, and Iwas just looking for part-time
work because I could barelyhandle life.
I was really struggling.
Hashimoto's and the depressionof the move and the way that I
had had to deal with our son forthose years before we moved and
(06:40):
the way that he was being.
It just took a lot out of meand I just wanted something
without a lot of responsibility.
I just wanted to be a lackeyand just do a job, earn the
money, come home and not put alot of thought into what was
going on.
And he was looking forsomething bigger because he
stands to make a lot more moneyin that position.
So he ended up getting somejobs where he had to go away for
(07:03):
training a couple times andI'll probably fill you in on
some of that in a differentepisode.
But that was another struggleand another little race we were
in, not competing against eachother, but just trying to make
sure we had some income.
He did end up getting jobsfirst, and several of them.
So I again was home with ourson and also the grandparents
(07:25):
were here.
It was a new set of struggles.
I thought it was going to bebetter, but it actually was just
new struggles.
So in between all of that, wedid go check out that parent
support group that I mentionedin my last episode and they met
at night, which was not greatfor us.
But we went and we brought ourson, because they said that it
was a kid and parent group sothe kids could all hang out and
(07:49):
the parents could meet andcommiserate, I guess.
So we also didn't like thatbecause we kind of wanted to get
away from him.
We didn't want to be in a roomfull of them, you know, but we
also didn't really want to leavehim with his grandparents, for
other reasons that I'll mentionlater.
But we would have been happy ifwe could have maybe tucked him
(08:09):
into bed and then gone.
We didn't like bringing him outat night.
He doesn't have much left atnight and it makes everything
harder, it seems.
Anyway, we went and we didn'tsee any kids that were like ours
, and I know that if you've metone you've only met one.
But these kids were higherfunctioning and highly medicated
(08:31):
and highly sugared up Lots ofMountain Dew, lots of chocolate,
lots of junk food, justshoveling it in.
We were appalled, honestly, atthe amount of bullshit that
these kids were being pumpedwith and their parents were not
attending to them at all,whereas we have to constantly
(08:54):
keep an eye out for our son.
He's higher needs.
He's much higher needs thanthese other kids were, and they
were completely content justeating junk food, laying around
watching movies in the otherroom.
We attended probably eight or10 of these meetings and it
wasn't informative or anything.
It was just a support group andit was nice to try to connect
(09:17):
with other parents.
You know, the struggles aredifferent way, different, and we
didn't really identify with alot and they didn't identify
with us either.
They didn't.
They just they have it betterthan we do.
And during the time that we wentto these weekly meetings, my
spouse actually brought it upthat our lives have been a lot
easier since we startedexperimenting with the medical
(09:39):
cannabis, with the medicalcannabis, and the lady, the mom
who runs it, actually told usnot to talk about that.
She doesn't want to hear aboutit, she doesn't want us to
mention it, she doesn't do itfor her kid and basically we're
not welcome to speak our minds,we're not welcome to share about
what we're doing in ourhousehold to cope with not
(10:04):
having medications and nothaving any services and being
new and being stressed out andhaving this abusive child.
We got rejected from the autismparent support group.
That was our first taste inIllinois of your kid is
different, your lifestyle is toodifferent and we don't want you
(10:25):
to speak.
Basically it was kind of messedup.
So that was the last time thatwe went.
Obviously, I mean, it made mereally sad.
It made both of us verydisappointed in people.
I thought we both thought thatwe would be understood, that we
would not be censored, thoughtthat we would be understood,
(10:47):
that we would not be censored,because this kind of autism
doesn't really allow forcensoring, does it?
I mentioned to you also aboutthat project the theater group
for special needs and it wascalled the Penguin Project.
I found that it was likebasically a countrywide thing
all through the US and I hadnever found it in Wisconsin, so
we got pretty excited about that.
(11:08):
That was during the same summer.
I made the contact and I gotthe invitation to go and the
first two or three meetings werebasically just acclimation
meetings let the kids getacclimated, and they were being
observed by the staff, thepeople who put the shows
together.
We were just enjoying lettingour child kind of be with other
(11:31):
special needs people, but hewasn't enjoying it and so we
didn't enjoy it as much as wewould have if he was having a
good time.
But he was just going throughthis thing where he just wanted
to high-pitch whine all the time, no matter what.
It was a step down from theconstant crying and wailing that
he was doing in Wisconsin forthose years, but it was still
(11:53):
constant, no matter what wasgoing on around him.
Even if he was being directlycommunicated with, he was not
having it, he was not engaging,he was only doing the whining.
I don't know, it was just awful, to be honest, Everything that
we did was to the soundtrack ofhim whining, making himself cry
(12:16):
and just being in this bowl ofdepression and trying to torture
the rest of us as well.
That was what really pissed meoff about the whole thing is
that, you know, I would havefelt bad for him if he wasn't
trying to make it our businesshe was doing.
It seemed like he was doing itfor our benefit.
And again, that goes back to theattention-seeking behaviors
(12:38):
that they taught me about inWisconsin and it just seemed
like that's what he was doing.
He was doing it as a form oftorture to everyone else around
him.
He didn't think that any of usdeserved to have a good time.
That's how it seemed to me byabout the I don't know maybe
five or six visits in.
I guess at one point there waslike an audition and they have
(13:04):
all the kids and the parents inthis.
It's just a room with foldingchairs arranged like an
auditorium seating and they hadto do these moves, you know,
singing and arm movements andleg movements and you know, kind
of like a hokey pokey kind ofshit.
But it wasn't.
And I, of course, you know I'mtrying to be a proud mama, I'm
(13:24):
trying.
His dad and I are both tryingto help him have a good time and
help him understand what'sgoing on and understand what's
being asked of him.
You know, and monkey, seemonkey do kind of stuff.
There were, I don't know, one ortwo times where it seemed like
he was having fun.
There was a girl in there whoknew him from when he was a
(13:45):
child, and she instantly waskind of glomming onto him and
supporting him and offering himher friendship.
She was kind of on the staffpart.
She wasn't special needs, shewas just a kid that worked with
the other kids and it was prettycool and I thought it was so
sweet that she remembered ourboy and wanted to work with him
(14:07):
and she was so compassionate andcaring and kind and she was his
age, you know, maybe even ayear younger, but he accepted
her kindness and it calmed himdown a little bit and he kind of
would do monkey see monkey dowith her.
He had a decent reaction to herand I was optimistic and his
(14:27):
dad was optimistic.
And then we got a notificationvia email that he is not going
to be part of the PenguinProject because his needs are
too great.
Again.
Now, at this point we hadalready been left out of the ice
capades thing in Wisconsin andI toughened up for that.
(14:48):
I put my armor on and I went towar for that.
And then the thing with theparent group and everything in
between, family rejection startshappening and all this stuff.
I had my armor on, you know,and I was fighting for my kid
and fighting for our rights andthen this theater group thing,
which you know, I had beenresearching for years and it
meant a lot to me because ourchild is a ham.
(15:09):
If he would just straighten upand be cool, he would have a
good time.
I really, really believed thiswas the outlet that was going to
make him happy.
And then we got rejected from aspecial needs theater group for
being too fucking special.
That one broke me.
That is the one the parentinggroup is.
(15:32):
Once that happened, I said tomy spouse I think I need to
start a YouTube channel becausethis is bullshit.
Then this Penguin Project thinghappened and I lost it.
I got home and I tried to talkabout it and I just started
sobbing.
I was so tired of my childgetting rejected from things and
(15:52):
not being able to fix it andnot being able to convince them
that he needs this and hedeserves this.
And if someone would just givehim a chance he would be really
fun.
He loves this stuff more thanany kid I've ever seen.
He loves acting.
He loves okay, so he can't talkright.
(16:15):
He's very entertaining and he'svery loving and fun loving, and
he's just going through a badtime.
But if you would give him achance?
But they didn't want to givehim a chance, and it's okay that
they were going to do such anadult themed play for the
(16:46):
special needs kids group I justI.
He didn't identify with any.
He has no idea what, he's neverseen that movie.
But we tried to get a copy ofHairspray and have him watch it
because, as you know, heresponds well once he has seen
something and he understandswhat he's getting into.
But he wasn't the least bitinterested.
I mean, no, he was not going tosit down and watch it and I
(17:09):
mean to tell you the truth, wedidn't want to watch it either.
How lame of a choice can youmake for kids special needs kids
to do a play about what?
Where's the Lion King?
You know where is the Emperor'sNew Groove?
What is going on?
Why hairspray?
You said this is for specialneeds children.
I don't understand.
It's fine, it wasn't meant tobe.
(17:31):
He would not have beeninterested in it anyway.
But it hurt to have himrejected from the one thing that
I thought was going to be goodfor him and that that is why
this podcast was born, Because Irealized, in the pain of having
my child constantly rejectedfrom everything we tried to do
(17:52):
for him, everything that wouldhave been good for him.
I'm too emotionally investedand, like I said early on, I
don't want to be ugly crying onYouTube, so that's why you get
my voice.
Instead, I do have a cutelittle story I want to share
with you, and in my next episodeI'm just going to go into more
details.
About every day after Newactivities going on.
(18:15):
There's all kinds of stuff thatI need to share with you.
Things got really messy.
I'm not going to lie.
They got messy, and he was 16.
So if this is you, if you'recoming up on this, if you've had
to deal with a move or anythingat all, or if you're just
curious, make sure to come backand listen to my next one.
Last time he was here was acouple weeks ago, here at the
(18:36):
camper.
I think he learned a new trick.
He was being so cute.
He was sitting here in thislittle booth.
I was making him a can of soupfor lunch while his dad was
doing some maintenance on thecamper.
So he made a cute little soundand I looked over and he had his
head resting in his hands onthe table, with his elbows on
the table and his head in hishands.
(18:58):
Now he knows the home alone,look.
So it's not new that he putshis hands on his face, but I
think that the new trick is thathe learned to put his elbows on
the table and rest his face inhis hands, and he looked like,
oh wow, look at this, this iscool, Look what I can do, you
know.
And he looked like he wasfeeling super cute too.
So that makes me think thatmaybe he saw himself do it in a
(19:21):
reflection recently and he wasshowing it to me.
So I marveled at how cute he wasand how smart he was at
figuring that out and Ientertained the whole thing the
whole time.
And he continued to do itwithout asking me to look and
without trying to get myattention.
And he began to entertainhimself while I was dealing with
his food and everything and Ifound him humming his own tune.
(19:44):
I had to go outside for aminute and come back in and he's
sitting here with his headresting in his little hands and
his elbows up on the table, andhe was just not even watching
the door, just looking down andaround on the table and humming
his own little tune, somethingthat he just was making up.
I didn't recognize it at alland it was just so cute.
I mean, you know, that's alevel of creativity that they
(20:07):
say our kids don't have, and Iam constantly being pleasantly
surprised with his level ofcreativity.
It's not constant, like daily,but all throughout his life I
have been pleasantly surprisedwith his creativity.
So don't lose hope.
I don't think everything theysay about our kids is right.
Our kid constantly proves meright, because what they say
(20:27):
about him and what he does, whathe shows, is completely
different, and I don't thinkhe's the only kid that's not
fitting the mold.
I want to thank you guys forreaching out to me with your
stories and your comments.
I really appreciate the lovethat you're sending me and, of
course, if you have anything tosay or if you'd like to tell me
how you're learning to parent,you can email me at
(20:49):
contactparentingsevereautism atgmailcom.
His little summer camp thing hasended, his little day camp, and
I'm now trying to figure out ifthere's anything else that we
can find for him to do.
But I think we recently found adisc golf course.
I guess there was a bigtournament like a national
(21:10):
tournament for disc golf and alot of the golfers stayed here
at the campground and one ofthem gifted my spouse with a
handful of the discs or theFrisbees or whatever they are.
He and our son have been goingout to the local disc golf
course recently, have been goingout to the local disc golf
course recently.
Our son does need a lot ofredirection but he can get, I
(21:37):
guess, two or three throws inbefore he gets all giggly and
goofy and forgets what he'sdoing and has to be retrained
again how to hold it, how torelease it, Because otherwise
he'll just throw it like a plate, you know, just straight up in
the air and whatever.
But he really likes it.
So I think that might be ournew autumn family thing and as
long as it doesn't snow we cando it into the winter as well.
Have you guys tried that?
(21:57):
Do your kids like that kind ofstuff?
Does your kid enjoy any kind ofphysical sport Volleyball,
badminton, tennis, basketball,pickleball, kickball, baseball,
wiffleball or frisbee golf?
Our son always loved kickballand he's getting okay at the
wiffleball when it's availableto him.
(22:20):
He hates all the other stuff.
Oh, he's actually.
No, he's getting really good atbasketball, at not playing the
game but shooting the baskets.
I'll have to get one of thosevideos up on my social media as
well.
I know I keep saying I'm goingto put all this cool stuff on my
socials and I haven't done ityet, and I apologize.
But since you are parents justlike I, you understand and
(22:40):
eventually they'll get out there.
That's the lifestyle that welive.
You know, one day maybe I'lljust flood everything all at
once.
I know that's not the greatestway to do it, but that's the way
our lives work, isn't it?
Well, let me know.
Let me know what your kidsenjoy, and you can do that by
emailing me or drop me a fanmail.
My next episode will be out intwo weeks.
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 that you're herewith me today.
This podcast is gainingtraction and I want to thank you
so much for sharing my episodesand sharing the information
contained within my episodes.
And if you're a new listener,please remember you can always
(00:38):
support the podcast to help mekeep it free for those who need
it.
If you click the support theshow icon on your player, you
should be able to go right tothe buy me a coffee section, and
that would be greatlyappreciated.
You can also check out mymerchandise it's just little
fanfare things that I haveavailable and you can follow my
links on my main hosting page,which is PSA short for Parenting
(01:03):
Severe Autism psa.
buzzsprout.
com And at the end of every showyou should be able to find my
show notes and links to all thedifferent ways that you can
support the podcast.
Most importantly, just keeplistening and keep sharing and
keep hoping for solutions andoptions for better lifestyles
for all of us.
I'm just being very random inthis episode about little things
(01:27):
that have come to my mind whilethinking about what I want to
tell you next, so bear with me.
When we moved to Illinois, Wewere looking for recreation, you
know, just some way to burn offenergy, because we had an
outdoor lifestyle in Wisconsinand that really doesn't exist
here, and we wanted to stayactive.
We were at Goodwill and myspouse found some tennis rackets
(01:51):
.
So that became our new hobbyand we picked up a basketball
for our son, because at thetennis courts right by our house
there are also a handful ofbasketball courts.
So we thought, yeah, there wego, he can just play with that.
It's right next to the tenniscourts and we'll all have a good
time.
We thought it would be great.
So we're at the tennis courts,and this was before the medical
(02:14):
cannabis came into the picture.
We had never played tennisbefore, so we were learning and
this became the norm.
We persevered, we kept doing it, no matter what, and we did it
for like two years and wetortured ourselves with this all
the time.
I mean, tennis was like a dailything for us and we always
dragged our son along because wedidn't want anyone else to have
(02:36):
to deal with him, but also wewanted to make sure that he was
getting treated the way that wewanted him to be treated, and
I'll get into that another time.
But we're at the tennis courtsand we're trying to play and
he's right behind us in thebasketball court and it's a
chain link fence.
We can see each other, hear eachother, everything, and all he
would do was scream like a big,bellow, deep scream, and just go
(02:59):
and he would have thebasketball way above his head
and then slam it down on theground.
I mean, he was like Hulk orsomething.
It was really insane.
And these were the fits of ragethat first started coming out.
They're different than what Isaw in Wisconsin.
He would still scream, but itwas more blood curdling or more
(03:24):
from a horror movie.
This was more I don't know, itwas just more base.
It was scarier.
He was very, very angry andviolent sounding.
This was what he would do allthe time.
This is you know, of course.
Yes, we started going to doctorsright away, as soon as we got
here as well, and that was hell.
As you know, I mentioned thehell we had with doctors around
(03:46):
here saying that they wouldn'thelp us with meds or anything.
I mean, this was you know.
We wanted to wait until he was18 or so before we got him on
meds, but this behavior actuallymoved that timeline up a little
bit for us as far as startingto seek meds.
So, yes, we weren't allowinghim to just be this way and not
try to get him treated, you know, especially when we realized
(04:07):
that cannabis was not an option.
And then we're like, well, whatare we supposed to do, Right?
Well, you know what I did.
We were still trying to figureit all out and we would take him
to the tennis courts and hewould never, ever let us enjoy a
game, but we brought him allthe time anyway, unless he was
actually asleep at the house orsomething, and there was someone
to make sure he was okay Around.
That same time, I think, is whenhe started to try to destroy
(04:31):
the baby monitor.
He was so out of hand and sodark and beginning to become
abusive to everything, and Iwanted to know what was going on
.
I wanted to know he was safe,because he wasn't just down the
hall from my room anymore and Ithink he started trying to
figure out how to destroy itbecause we had a lot of problems
(04:51):
with it.
Things got so bad with him thatwhen we started looking at
houses shortly after we got here, I didn't want any house that
would not allow him to be in aseparate area from me.
So my dream home actually hasseparate living quarters
attached, but like, if you see,like two of the like round
(05:13):
structure rooms, one on each endof the house and then the main
house in the middle.
That's what I imagine Like.
He needs his own man area wherehe has maybe even a kitchenette
a safe one for him that hecan't burn himself, catch
himself on fire or anything likethat but a kitchenette of just
a bachelor pad kind of thing inthe same house, because I just I
(05:35):
couldn't deal with him.
I couldn't stand to be aroundhim and he clearly couldn't
stand to be around us and weneed to take care of him and
there's no other option.
So he has to have a separatewing of the house and that would
actually make my nervous systemcalm down a little bit.
I seriously cannot live withthis child, you know, and he's a
grown-ass man.
(05:56):
It's always got me up in arms.
Another thing about when wemoved here is we were kind of
racing to find jobs and our sonwas not yet of the age where we
could get paid to take care ofhim.
You have to wait until he's 18for that.
It was kind of like whoevergets a job first is going to be
the working parent and then theother will stay home.
(06:17):
So my spouse was looking forfull-time work in sales
management or executive position, which he is completely
qualified for at the time, and Iwas just looking for part-time
work because I could barelyhandle life.
I was really struggling.
Hashimoto's and the depressionof the move and the way that I
had had to deal with our son forthose years before we moved and
(06:40):
the way that he was being.
It just took a lot out of meand I just wanted something
without a lot of responsibility.
I just wanted to be a lackeyand just do a job, earn the
money, come home and not put alot of thought into what was
going on.
And he was looking forsomething bigger because he
stands to make a lot more moneyin that position.
So he ended up getting somejobs where he had to go away for
(07:03):
training a couple times andI'll probably fill you in on
some of that in a differentepisode.
But that was another struggleand another little race we were
in, not competing against eachother, but just trying to make
sure we had some income.
He did end up getting jobsfirst, and several of them.
So I again was home with ourson and also the grandparents
(07:25):
were here.
It was a new set of struggles.
I thought it was going to bebetter, but it actually was just
new struggles.
So in between all of that, wedid go check out that parent
support group that I mentionedin my last episode and they met
at night, which was not greatfor us.
But we went and we brought ourson, because they said that it
was a kid and parent group sothe kids could all hang out and
(07:49):
the parents could meet andcommiserate, I guess.
So we also didn't like thatbecause we kind of wanted to get
away from him.
We didn't want to be in a roomfull of them, you know, but we
also didn't really want to leavehim with his grandparents, for
other reasons that I'll mentionlater.
But we would have been happy ifwe could have maybe tucked him
(08:09):
into bed and then gone.
We didn't like bringing him outat night.
He doesn't have much left atnight and it makes everything
harder, it seems.
Anyway, we went and we didn'tsee any kids that were like ours
, and I know that if you've metone you've only met one.
But these kids were higherfunctioning and highly medicated
(08:31):
and highly sugared up Lots ofMountain Dew, lots of chocolate,
lots of junk food, justshoveling it in.
We were appalled, honestly, atthe amount of bullshit that
these kids were being pumpedwith and their parents were not
attending to them at all,whereas we have to constantly
(08:54):
keep an eye out for our son.
He's higher needs.
He's much higher needs thanthese other kids were, and they
were completely content justeating junk food, laying around
watching movies in the otherroom.
We attended probably eight or10 of these meetings and it
wasn't informative or anything.
It was just a support group andit was nice to try to connect
(09:17):
with other parents.
You know, the struggles aredifferent way, different, and we
didn't really identify with alot and they didn't identify
with us either.
They didn't.
They just they have it betterthan we do.
And during the time that we wentto these weekly meetings, my
spouse actually brought it upthat our lives have been a lot
easier since we startedexperimenting with the medical
(09:39):
cannabis, with the medicalcannabis, and the lady, the mom
who runs it, actually told usnot to talk about that.
She doesn't want to hear aboutit, she doesn't want us to
mention it, she doesn't do itfor her kid and basically we're
not welcome to speak our minds,we're not welcome to share about
what we're doing in ourhousehold to cope with not
(10:04):
having medications and nothaving any services and being
new and being stressed out andhaving this abusive child.
We got rejected from the autismparent support group.
That was our first taste inIllinois of your kid is
different, your lifestyle is toodifferent and we don't want you
(10:25):
to speak.
Basically it was kind of messedup.
So that was the last time thatwe went.
Obviously, I mean, it made mereally sad.
It made both of us verydisappointed in people.
I thought we both thought thatwe would be understood, that we
would not be censored, thoughtthat we would be understood,
(10:47):
that we would not be censored,because this kind of autism
doesn't really allow forcensoring, does it?
I mentioned to you also aboutthat project the theater group
for special needs and it wascalled the Penguin Project.
I found that it was likebasically a countrywide thing
all through the US and I hadnever found it in Wisconsin, so
we got pretty excited about that.
(11:08):
That was during the same summer.
I made the contact and I gotthe invitation to go and the
first two or three meetings werebasically just acclimation
meetings let the kids getacclimated, and they were being
observed by the staff, thepeople who put the shows
together.
We were just enjoying lettingour child kind of be with other
(11:31):
special needs people, but hewasn't enjoying it and so we
didn't enjoy it as much as wewould have if he was having a
good time.
But he was just going throughthis thing where he just wanted
to high-pitch whine all the time, no matter what.
It was a step down from theconstant crying and wailing that
he was doing in Wisconsin forthose years, but it was still
(11:53):
constant, no matter what wasgoing on around him.
Even if he was being directlycommunicated with, he was not
having it, he was not engaging,he was only doing the whining.
I don't know, it was just awful, to be honest, Everything that
we did was to the soundtrack ofhim whining, making himself cry
(12:16):
and just being in this bowl ofdepression and trying to torture
the rest of us as well.
That was what really pissed meoff about the whole thing is
that, you know, I would havefelt bad for him if he wasn't
trying to make it our businesshe was doing.
It seemed like he was doing itfor our benefit.
And again, that goes back to theattention-seeking behaviors
(12:38):
that they taught me about inWisconsin and it just seemed
like that's what he was doing.
He was doing it as a form oftorture to everyone else around
him.
He didn't think that any of usdeserved to have a good time.
That's how it seemed to me byabout the I don't know maybe
five or six visits in.
I guess at one point there waslike an audition and they have
(13:04):
all the kids and the parents inthis.
It's just a room with foldingchairs arranged like an
auditorium seating and they hadto do these moves, you know,
singing and arm movements andleg movements and you know, kind
of like a hokey pokey kind ofshit.
But it wasn't.
And I, of course, you know I'mtrying to be a proud mama, I'm
(13:24):
trying.
His dad and I are both tryingto help him have a good time and
help him understand what'sgoing on and understand what's
being asked of him.
You know, and monkey, seemonkey do kind of stuff.
There were, I don't know, one ortwo times where it seemed like
he was having fun.
There was a girl in there whoknew him from when he was a
(13:45):
child, and she instantly waskind of glomming onto him and
supporting him and offering himher friendship.
She was kind of on the staffpart.
She wasn't special needs, shewas just a kid that worked with
the other kids and it was prettycool and I thought it was so
sweet that she remembered ourboy and wanted to work with him
(14:07):
and she was so compassionate andcaring and kind and she was his
age, you know, maybe even ayear younger, but he accepted
her kindness and it calmed himdown a little bit and he kind of
would do monkey see monkey dowith her.
He had a decent reaction to herand I was optimistic and his
(14:27):
dad was optimistic.
And then we got a notificationvia email that he is not going
to be part of the PenguinProject because his needs are
too great.
Again.
Now, at this point we hadalready been left out of the ice
capades thing in Wisconsin andI toughened up for that.
(14:48):
I put my armor on and I went towar for that.
And then the thing with theparent group and everything in
between, family rejection startshappening and all this stuff.
I had my armor on, you know,and I was fighting for my kid
and fighting for our rights andthen this theater group thing,
which you know, I had beenresearching for years and it
meant a lot to me because ourchild is a ham.
(15:09):
If he would just straighten upand be cool, he would have a
good time.
I really, really believed thiswas the outlet that was going to
make him happy.
And then we got rejected from aspecial needs theater group for
being too fucking special.
That one broke me.
That is the one the parentinggroup is.
(15:32):
Once that happened, I said tomy spouse I think I need to
start a YouTube channel becausethis is bullshit.
Then this Penguin Project thinghappened and I lost it.
I got home and I tried to talkabout it and I just started
sobbing.
I was so tired of my childgetting rejected from things and
(15:52):
not being able to fix it andnot being able to convince them
that he needs this and hedeserves this.
And if someone would just givehim a chance he would be really
fun.
He loves this stuff more thanany kid I've ever seen.
He loves acting.
He loves okay, so he can't talkright.
(16:15):
He's very entertaining and he'svery loving and fun loving, and
he's just going through a badtime.
But if you would give him achance?
But they didn't want to givehim a chance, and it's okay that
they were going to do such anadult themed play for the
(16:46):
special needs kids group I justI.
He didn't identify with any.
He has no idea what, he's neverseen that movie.
But we tried to get a copy ofHairspray and have him watch it
because, as you know, heresponds well once he has seen
something and he understandswhat he's getting into.
But he wasn't the least bitinterested.
I mean, no, he was not going tosit down and watch it and I
(17:09):
mean to tell you the truth, wedidn't want to watch it either.
How lame of a choice can youmake for kids special needs kids
to do a play about what?
Where's the Lion King?
You know where is the Emperor'sNew Groove?
What is going on?
Why hairspray?
You said this is for specialneeds children.
I don't understand.
It's fine, it wasn't meant tobe.
(17:31):
He would not have beeninterested in it anyway.
But it hurt to have himrejected from the one thing that
I thought was going to be goodfor him and that that is why
this podcast was born, Because Irealized, in the pain of having
my child constantly rejectedfrom everything we tried to do
(17:52):
for him, everything that wouldhave been good for him.
I'm too emotionally investedand, like I said early on, I
don't want to be ugly crying onYouTube, so that's why you get
my voice.
Instead, I do have a cutelittle story I want to share
with you, and in my next episodeI'm just going to go into more
details.
About every day after Newactivities going on.
(18:15):
There's all kinds of stuff thatI need to share with you.
Things got really messy.
I'm not going to lie.
They got messy, and he was 16.
So if this is you, if you'recoming up on this, if you've had
to deal with a move or anythingat all, or if you're just
curious, make sure to come backand listen to my next one.
Last time he was here was acouple weeks ago, here at the
(18:36):
camper.
I think he learned a new trick.
He was being so cute.
He was sitting here in thislittle booth.
I was making him a can of soupfor lunch while his dad was
doing some maintenance on thecamper.
So he made a cute little soundand I looked over and he had his
head resting in his hands onthe table, with his elbows on
the table and his head in hishands.
(18:58):
Now he knows the home alone,look.
So it's not new that he putshis hands on his face, but I
think that the new trick is thathe learned to put his elbows on
the table and rest his face inhis hands, and he looked like,
oh wow, look at this, this iscool, Look what I can do, you
know.
And he looked like he wasfeeling super cute too.
So that makes me think thatmaybe he saw himself do it in a
(19:21):
reflection recently and he wasshowing it to me.
So I marveled at how cute he wasand how smart he was at
figuring that out and Ientertained the whole thing the
whole time.
And he continued to do itwithout asking me to look and
without trying to get myattention.
And he began to entertainhimself while I was dealing with
his food and everything and Ifound him humming his own tune.
(19:44):
I had to go outside for aminute and come back in and he's
sitting here with his headresting in his little hands and
his elbows up on the table, andhe was just not even watching
the door, just looking down andaround on the table and humming
his own little tune, somethingthat he just was making up.
I didn't recognize it at alland it was just so cute.
I mean, you know, that's alevel of creativity that they
(20:07):
say our kids don't have, and Iam constantly being pleasantly
surprised with his level ofcreativity.
It's not constant, like daily,but all throughout his life I
have been pleasantly surprisedwith his creativity.
So don't lose hope.
I don't think everything theysay about our kids is right.
Our kid constantly proves meright, because what they say
(20:27):
about him and what he does, whathe shows, is completely
different, and I don't thinkhe's the only kid that's not
fitting the mold.
I want to thank you guys forreaching out to me with your
stories and your comments.
I really appreciate the lovethat you're sending me and, of
course, if you have anything tosay or if you'd like to tell me
how you're learning to parent,you can email me at
(20:49):
contactparentingsevereautism atgmailcom.
His little summer camp thing hasended, his little day camp, and
I'm now trying to figure out ifthere's anything else that we
can find for him to do.
But I think we recently found adisc golf course.
I guess there was a bigtournament like a national
(21:10):
tournament for disc golf and alot of the golfers stayed here
at the campground and one ofthem gifted my spouse with a
handful of the discs or theFrisbees or whatever they are.
He and our son have been goingout to the local disc golf
course recently, have been goingout to the local disc golf
course recently.
Our son does need a lot ofredirection but he can get, I
(21:37):
guess, two or three throws inbefore he gets all giggly and
goofy and forgets what he'sdoing and has to be retrained
again how to hold it, how torelease it, Because otherwise
he'll just throw it like a plate, you know, just straight up in
the air and whatever.
But he really likes it.
So I think that might be ournew autumn family thing and as
long as it doesn't snow we cando it into the winter as well.
Have you guys tried that?
(21:57):
Do your kids like that kind ofstuff?
Does your kid enjoy any kind ofphysical sport Volleyball,
badminton, tennis, basketball,pickleball, kickball, baseball,
wiffleball or frisbee golf?
Our son always loved kickballand he's getting okay at the
wiffleball when it's availableto him.
(22:20):
He hates all the other stuff.
Oh, he's actually.
No, he's getting really good atbasketball, at not playing the
game but shooting the baskets.
I'll have to get one of thosevideos up on my social media as
well.
I know I keep saying I'm goingto put all this cool stuff on my
socials and I haven't done ityet, and I apologize.
But since you are parents justlike I, you understand and
(22:40):
eventually they'll get out there.
That's the lifestyle that welive.
You know, one day maybe I'lljust flood everything all at
once.
I know that's not the greatestway to do it, but that's the way
our lives work, isn't it?
Well, let me know.
Let me know what your kidsenjoy, and you can do that by
emailing me or drop me a fanmail.
My next episode will be out intwo weeks.
You hang in there, You're asuperhero.
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