August 20, 2025 • 23 mins
Shannon shares the challenging journey of relocating from Wisconsin to Illinois with her severely autistic son, highlighting the unexpected difficulties they faced and the small victories that kept them going through the transition.
• Preparing requires extensive preparation, ideally with videos of new locations
• Transitioning to living with grandparents created significant challenges, including disrupted sleep patterns
• Learning the ropes of medical cannabis in Illinois for Autism
• Seeking special needs theatre opportunities
• A stranger's understanding in a grocery store
• Her son's attachment to his "Snowflake" obsidian rock shows his ability to connect and remember important details
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (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.
.
.
still working on some soundquality issues.
My chair is creaky and I thinkit picks up in the mic, so I am
sorry, but I'm wiggly and we'rejust going to have to deal with
that.
Please remember, if any ofthese episodes speak to you in
(00:38):
any way and you would like tohelp me get the word out about
parenting severe autism, I wouldbe delighted if you would share
any of my episodes, or even apiece of them, with someone else
.
As I've mentioned before, I'mnot allowed to advertise this
podcast in the parenting groupson social media, because the
(01:00):
groups are very strict withtheir rules.
I know that there are about4,000 more families out there.
I would love if you would shareit and, of course, you can
always support the show byclicking the support the show
link, and that would help uskeep this podcast free for those
who need it, and I do have agoal of donating money to
(01:21):
another severe autism family inneed of some of the things that
you cannot get on insurance andwaivers and things like that.
Most importantly, please justkeep listening, keep advocating
and keep sharing.
In this episode I'm going tojust go over some of the things
that we dealt with during theearly days of moving from our
(01:43):
location in beautiful Wisconsinback here to Illinois.
We knew, probably two monthsahead at least, that we would
maybe have to move back toIllinois.
So with our son, he actuallyneeds a lot of notice.
For instance, if we're going totake him to a water park or a
(02:04):
new arcade or even a new storeanywhere that we don't go
regularly.
The best thing that we can dofor him is to show him videos of
the place, and he gets veryabsorbed in that.
He is very able to remember thevideo so well that when he gets
to the place, he feels like heknows it already, and that is
(02:26):
the best way for us to introducea space to him.
Even if we're going to a hotelthat has an indoor water park or
an indoor pool or somethinglike that anything that's a big
change from just being at home.
We find that he makes theadjustment faster if he's seen
it on video.
So YouTube is great for that.
A lot of businesses put littlevideos of their stuff on YouTube
(02:49):
or on their own business webpage.
So that is normally how wewould prep him.
But for this we prepped him bysimply talking about living with
grandma and grandpa mamaw andpapaw is what we call them and
trying to keep a positiveattitude about it.
When we talked about it, ofcourse I was scared to death to
(03:09):
have to do this and we were verydepressed about it.
But we tried to put on a happyface and help him look forward
to the opportunity of livingwith his loving grandparents Of
course he loves Mamaw and Papawof living with his loving
grandparents.
Of course he loves Mamaw andPapaw.
So we were hoping that he wouldjust be naturally excited.
Unfortunately, there were noother selling points besides the
(03:33):
love of Mamaw and Papaw.
You know they used to have anin-ground pool but, as I
mentioned, they had filled it inone or two years before and
ever since then Jacob has justreally not been very excited to
visit them that was pretty muchthe only attraction and the
neighbors, who he also callsGrandma and Grandpa.
They have a pool, but they alsohave a lot of family.
(03:56):
He would have needed to besupervised most of the time and
there was just.
It wouldn't have worked out ifhe were to visit here without us
.
So he wasn't accustomed togoing over there and it just
wasn't something we could sellhim on.
But we tried to just build itup because he had lived here
(04:16):
before until he was like sevenor eight, you know.
So we thought, well, maybe that.
But there was that time when hestayed here for several weeks
and when we picked him up he wassobbing in my arms and he did
not enjoy himself and that waspretty much the last memory that
he had.
So you know, I think he wasputting on a brave face for us,
(04:40):
because we were putting on abrave face for him.
But I don't think any of uswere really buying into it at
all.
We all knew that it wasn'tgoing to be great, but we tried.
He never really seemed toappreciate the land that we had
there in Wisconsin.
He never really was into it,even though he had all the
(05:02):
freedom in the world.
He could ride the four wheelersand we could go on walks and
you know, there was water andwoods.
It was a beautiful land, but hewas just really being miserable
all the time.
So we never thought that heappreciated it and we thought,
well, maybe it won't be such abig deal when we do move.
I mean, you know what does hecare?
Right?
And that's the kind of pit thatyou fall into sometimes, I
(05:25):
think, when you have a child whocannot really communicate with
you, because you kind of juststart thinking that he doesn't
like anything and because hecan't tell you that he does.
He can only tell you that hehates everything.
What I mean Like he's just, hisbehaviors and his actions are
very ungrateful and very unhappyand very agitated.
(05:48):
It was very rare for us to seehim in any other state unless he
was shuffling his feet in hisroom and humming in that almost
catatonic state that I told youabout.
So we thought, well, you knowwhat is it going to make a
difference for him?
I mean, he'll have more familyaround and he'll have more
(06:08):
attention from his grandmotherand stuff like that.
So maybe it'll be better, maybehe'll enjoy it more than we
will, I don't know.
So we just I mean, we didn'thave a choice, we just had to do
it.
So even though the schoolexperiences were bad there in
Wisconsin, we were a bit worriedabout having to change schools
again, but again he grew uparound here and he had great
(06:31):
experiences in the schoolsaround here.
He wouldn't be going to thesame school that he did when we
moved, but there was a reallygood chance that some of the
kids he went to school with weregoing to be at his school and
high school.
So I mean, you're going back toyour old neighborhood, going to
be at his school and highschool.
So I mean you're going back toyour old neighborhood.
It could be good, it could bebad, we don't know.
But we kind of felt a littlebit better about the schools
(06:54):
here because of how his dadadvocated for him to get a good
education system in place in thefirst place.
I don't know.
We just thought, well, it'llsuck to have to change schools.
I mean that sucks for any kid,but maybe it'll be better, maybe
it will.
So we moved here at the end ofApril and school ends in at the
(07:15):
end of May or beginning of Juneand we didn't want to get him
all set up in a new school thatyear.
I mean that's just way too much.
It's an eight hour drive to gethere from our house in
Wisconsin and he had to put upwith us packing and watch
everything just get dismantledand I'm sure that was a lot for
him and we really tried to walkhim through the process during
(07:38):
every single thing that we weredoing and we tried to stay
upbeat as he watched us pack allof our belongings and sell
everything that we could in themeantime.
It was really hard because wewere so sad and we didn't want
him to pick up on that.
We just had to do, you know, dothe best we could with it.
When we got here we tried tomake sure he was content.
(08:01):
The room that he ended uptaking was not his room when we
were living here before, so itwas kind of new for him.
I didn't like it much becauseit was in the front of the house
and the street is right thereand the windows are not great.
So I was worried about all thenoise because where we lived in
Wisconsin it was the country.
(08:22):
It was so quiet and I was alittle bit nervous about that
big change because it was hardfor me to make that big change
as well, just like if you livein the city and you move to the
country, that the silence isannoying at first, you know.
But also we thought he wouldhave a great time getting
reintroduced to all the peoplethat he knew when he was a child
(08:44):
, all the support that we havehere with extended family and I
mean just good friends of myspouse really for that, and it
didn't take long to realize thathe probably wasn't enjoying
himself here.
He did not adjust well and noneof us really did.
It was hard.
You know His behavior was notgreat while we were in Wisconsin
(09:07):
.
You may recall these storieshave been leading up to a big
event with his behavior.
It just seemed to get magnifiedonce we moved here and there
was a big transition in justbeing here because he was used
to having his grandfather andsometimes the uncle in our house
.
He was used to that.
They were very predictablebecause they didn't work.
(09:28):
They got up at a certain timevery early in the morning.
They did the same thing everyday and it didn't really disturb
him because his bedroom was wayat the other.
Early in the morning they didthe same thing every day and it
didn't really disturb himbecause his bedroom was way at
the other end of the hallway andthey didn't even have to walk
by his room.
So he got all the quiet andprivacy that he needed.
But here this house is loud,it's not really well insulated
(09:51):
and his grandmother was stillworking and she was working
third shift.
So he had to be quiet duringthe day because she was sleeping
, and that's not something heever had to deal with.
Being at our house, he couldmake all the noise he wanted,
even in the middle of the night.
Most of us didn't even knowbecause of the space in between
(10:13):
our bedrooms and everything.
Now he was having to reallywatch his P's and Q's.
He runs everywhere that he goesin this house and up the stairs
and you know he's just a stomperand a runner and he wasn't
really allowed to do thatanymore.
He's really not allowed to behimself in this house, because
his grandmother needed to sleepduring the hours that everyone
(10:35):
else is awake and then she would, of course, have two days off a
week.
Now she's up during the hoursthat she would normally work,
which is third shift, which isthe middle of the night, and she
is a stomper as well.
She takes she's very small andshe takes these fast little
(10:55):
steps and she sounds like adrunken toddler running around
the house and his room is rightat the top of the stairs, on the
way to the bathroom, on the wayto her bedroom, everyone has to
go by his room first, and theway that she stomps around the
house with no carpet on woodfloors, it was disturbing his
(11:17):
sleep, it was disturbing mysleep, it just it was a
nightmare, to be honest.
And you know just this, drunk,if you can imagine how little
babies, when they're learning towalk, they take a step and then
they take a step, and thenmaybe they stumble and they take
a few steps, boom, boom, boom,boom, and then they walk again.
Yeah, that's what it soundedlike.
You know, just boom, boom, boom, boom, boom, boom, boom, boom,
(11:37):
boom, boom, boom, boom, and allnight long, all freaking night
long.
So not only did we have to dealwith the results of him having
sleep issues still and nothaving meds, but also we had to
deal with this new thing thatwas keeping him from sleeping.
I mean, it had to be keepinghim from sleeping.
He can't tell us, but hisbehaviors got worse, so I think
(12:00):
that it affected him.
Then, when he would spend timewith her because all he ever
wanted was to spend time withhis grandmother and when he
would spend time with her, shewas laying in bed in the dark
and he would have to go in thereand lay in her bed in the dark
in the middle of the day andwatch TV just to be with her.
And that really pissed me off.
(12:22):
Because, hey, you're dealingwith sleep issues.
The first thing you need is toregulate your circadian rhythm.
You have to see the sun in themorning.
You have to see the sun in theevening before it goes down.
You got to get those differentcolor rays into your vision so
that your body can regulate.
You cannot be laying around ina pitch black room in the middle
(12:47):
of the day when you have sleepissues.
It's just not good.
But I couldn't keep him fromsnuggling on his grandmother I
mean, how cruel is that, youknow?
So that was a real struggle forus.
I wanted to tell you threethings about our move here.
And then I have a cute littlestory.
We immediately started lookinginto medical cannabis as soon as
(13:10):
we got here, and I knew thatthere was a dispensary in a
specific place because we hadseen it.
I think it was the first one.
We went over there, desperate,very, very desperate.
I mean we were haggard, we hadtears in our eyes.
It was absolute hell livingwith this child and watching him
go through his own personalhell every day.
So we were at our wits endbefore we even got to the
(13:33):
dispensary and we found out thatautism was not on the list of
approved conditions.
So we were very disheartened bythis of all conditions.
I mean, why not?
Why not?
So we gave a heartfelt storyand gave our plea.
(13:56):
We didn't know how it worked.
.
.
and I ended up working inmedical dispensaries helping
people get their cards for theirkids with autism, so I know how
it works now, but back then Ididn't know, and we thought we
could convince them to help us.
And actually the girl that wasworking there gave us a full
packet of information to applyand then said something to the
(14:17):
effect of if you really need itand you can't get it, I can help
you.
And so we were like, oh okay,and we left and in the parking
lot we kind of were looking ateach other..
.
We didn't even want to LOOK ateach other in the parking lot in
case anyone was watching us,but we were talking out of the
sides of our mouths saying didwe just, did she just offer?
(14:39):
I think she did.
Yeah, I think she just offeredto sell us some weed for our kid
?
Yeah, that was..
.
It was nice to know that sheunderstood and she was willing
to help.
We never did go that route, butthe route that we went was that
all of a sudden, my husband hadqualifying conditions.
So we took my husband to getmedical cannabis for his
(15:04):
conditions and it helped myhusband a great deal.
So I started making cookies formy husband.
I learned how to make thesecookies.
.
.
the same.
.
.
the gluten-free, sugar-freecookies that I always made and I
would include this cannabisproduct in the cookies and it
was an oil, it was called RSOand I started just making these
(15:28):
cookies for my husband, cuttingthem and putting them in his
snacks and he would have themfor breakfast and all kinds of
other stuff.
So it got to a point where Iwas looking for some kind of
something that wouldautomatically open at a certain
time in the morning and give myhusband an access to a piece of
(15:51):
cookie before he even got out ofbed, because we really needed
my husband to be medicatedbefore he talked to anyone else
in the house period because hewas so out of sorts and mean and
destructive.
And I found that there's likethis little thing you can set an
(16:13):
alarm and it'll go off and Ithink it'll talk and it opens a
little door and I think it'slike a cat food thing or a dog
thing, and so it will givesnacks at certain times.
I never ended up doing thatbecause things just progressed
so quickly in our lifestyle andin this house that it wouldn't
(16:34):
have been used as well as Ithought it would.
But I really felt like I neededit.
I felt like he needed an IV ofthe shit just to keep him in a
happy state and help him wake upbetter.
I first started out with twoand a half milligrams and that
worked for a couple weeks andthen it didn't work anymore, so
I went to five milligrams.
(16:55):
There's a little calculator youcan use online and figure all
this stuff out, and so then Ihad to increase it and increase
it and increase it and then atsome point, while I was working
in the dispensary, autism gotapproved for the medical
conditions that qualify.
So that'll be another story.
(17:16):
I can't get into that right now.
Sorry, I got off track, but thepoint was that we went and we
got turned away because theywere not serving autism at the
time and my child was not evenan adult, and it wasn't legal, I
like recreationally at the time, it was just medical in the
state, so that was 2018.
(17:37):
It was just another blow.
It felt like we got punched inthe gut Because, like I said,
all I kept saying in Wisconsinwas damn, if we could just get
to a state that has medicalcannabis, I really think it
would help him, and we were soexcited that here's the one
bright point of moving toIllinois is that we can get
medical cannabis for our son.
Walked in and they were like no, you can't, it doesn't qualify,
(18:00):
it's not a qualifying condition, sorry.
So we ended up medicating myhusband instead.
The other thing I immediatelystarted doing was looking into
theater groups again, becausethere's nothing to do here.
There is no yard, there is nopool, there is nothing, and
there was no school yet.
(18:21):
And I thought, you know, I'mgoing to get back into this
search for theater groupsbecause I feel that if he could
express himself and have acreative outlet where he could
just be an actor like he wantsto be, then, yeah, that would
maybe help him be happy.
So I was delighted to find veryquickly, within just a few days
, that there was a theater groupfor special needs people and it
(18:45):
was called the Penguin Project.
I was so happy to get thatfigured out.
I mean I was ecstatic and I gothim involved in that.
In my next episode I'll tell youhow that started out and how
that went.
And the other thing I wanted totell you is that my spouse and
I took Jacob to the grocerystore and I mentioned a long
(19:06):
time ago my theory on this andI'm going to mention it again
here.
He got to a point with publicplaces that he seemed to think
that he had to fill any verylarge space with himself and it
seemed like an awfully largetask for this little guy, even
though he's 5'10".
It just seemed like it stressedhim out so bad to be in
(19:30):
somewhere such as a big grocerystore with all this open space.
And as soon as he gets into alarge open space he just goes
crazy and starts trying to fillthe whole space.
I mean huge ceiling, you knowreally tall ceilings, big, wide
wall-to-wall space.
It seemed like he thought hewas responsible for having to
(19:53):
fill every inch of air withsound and body movements and it
was awful for all of us.
And I remember during our firstor second trip to the store
after being here.
It's just right down the road.
I had tears in my eyes and Ilooked so desperate, my spouse
looked so unhappy and, of course, jacob was doing his stuff.
(20:15):
And this woman approached me.
She's like I know what you'regoing through.
I have one as well.
My son has autism and Iunderstand how you feel and I
almost lost it.
I mean, I already had tears inmy eyes, I already felt sick and
(20:37):
in pain and could hardly walkjust from the weight of this
severe autism behavior that Iwas dealing with.
And to have someone reach outto me in that moment, it meant
so much.
But it also was like, oh mygosh, it's so obvious, wow, you
know, wow, I can't believe thatit's so obvious that she would
(21:01):
approach me like that.
And I looked at my husband andI was like did you hear that?
And he goes.
You need to go ask her what sheknows.
Does she?
Is there anything around herethat can help us?
And of course I was just shutdown completely.
I didn't even think about that.
So I went over there and askedher if she knows of any
resources and she gave us someinformation on a local parent
(21:23):
support group.
That was not something that Ihad ever found in Wisconsin it
was.
I found an autism teen group,but I hadn't found a parent
support group.
So I thought, well, that'sinteresting, I've never been to
a support group for anything.
Wow, I wonder what that's like.
It sounds like it's reallygreat.
And that was how we started ourstay here in Illinois.
(21:44):
That was within the first weekwe had all those things going on
the theater group, thedispensary and the parent
support group.
In my next episode I will tellyou all about our experiences
with each one of those.
And right now I just learnedyesterday a super cute story
again about Jacob.
(22:05):
So he took that littlesnowflake obsidian rock to camp
again on Friday and when theywere in the car on the way home,
I think, and his dad asked himdo you have your rock?
And Jacob said, oh, no,snowflake.
My spouse asked him if he knewwhere it was and Jacob indicated
(22:27):
that he wanted to go back andget it.
So they went to the park allthe way back to camp, to the
park that the kids all went to,and Jacob went directly to the
picnic table that he was sittingat and found Snowflake on the
ground right next to the picnictable.
I don't know.
I just thought that was so cute.
I mean, he's really attached tothis rock.
(22:48):
Oh, no, snowflake.
I know that school has startedfor most of you, so if you have
anything that you want to ventabout, of course you can always
contact me atcontactparentingsevereautism at
gmailcom.
And I'm no expert, of course.
I'm just a mom going through it, the same as you.
But I hope that this has helpedyou in some way.
(23:10):
Even my last episode about theIEPs and communicating with
school and all that kind ofstuff Lots of new stories coming
up.
So if you have any questions,comments, concerns or you just
want to vent, feel free tocontact me.
Also, make sure to check mypodcast page and keep up with my
social medias.
I'm still trying to get somepictures out there that I told
(23:32):
you I would get out there.
As you know, our lifestyle is alittle unpredictable and I'm
not always able to do what Iwant when I want to, but I'm
going to be posting those soon.
But check my podcast page ifyou have missed any of my
episodes.
This will be episode 65.
So if you have not heard 65episodes from me, go catch up.
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.
.
.
still working on some soundquality issues.
My chair is creaky and I thinkit picks up in the mic, so I am
sorry, but I'm wiggly and we'rejust going to have to deal with
that.
Please remember, if any ofthese episodes speak to you in
(00:38):
any way and you would like tohelp me get the word out about
parenting severe autism, I wouldbe delighted if you would share
any of my episodes, or even apiece of them, with someone else
.
As I've mentioned before, I'mnot allowed to advertise this
podcast in the parenting groupson social media, because the
(01:00):
groups are very strict withtheir rules.
I know that there are about4,000 more families out there.
I would love if you would shareit and, of course, you can
always support the show byclicking the support the show
link, and that would help uskeep this podcast free for those
who need it, and I do have agoal of donating money to
(01:21):
another severe autism family inneed of some of the things that
you cannot get on insurance andwaivers and things like that.
Most importantly, please justkeep listening, keep advocating
and keep sharing.
In this episode I'm going tojust go over some of the things
that we dealt with during theearly days of moving from our
(01:43):
location in beautiful Wisconsinback here to Illinois.
We knew, probably two monthsahead at least, that we would
maybe have to move back toIllinois.
So with our son, he actuallyneeds a lot of notice.
For instance, if we're going totake him to a water park or a
(02:04):
new arcade or even a new storeanywhere that we don't go
regularly.
The best thing that we can dofor him is to show him videos of
the place, and he gets veryabsorbed in that.
He is very able to remember thevideo so well that when he gets
to the place, he feels like heknows it already, and that is
(02:26):
the best way for us to introducea space to him.
Even if we're going to a hotelthat has an indoor water park or
an indoor pool or somethinglike that anything that's a big
change from just being at home.
We find that he makes theadjustment faster if he's seen
it on video.
So YouTube is great for that.
A lot of businesses put littlevideos of their stuff on YouTube
(02:49):
or on their own business webpage.
So that is normally how wewould prep him.
But for this we prepped him bysimply talking about living with
grandma and grandpa mamaw andpapaw is what we call them and
trying to keep a positiveattitude about it.
When we talked about it, ofcourse I was scared to death to
(03:09):
have to do this and we were verydepressed about it.
But we tried to put on a happyface and help him look forward
to the opportunity of livingwith his loving grandparents Of
course he loves Mamaw and Papawof living with his loving
grandparents.
Of course he loves Mamaw andPapaw.
So we were hoping that he wouldjust be naturally excited.
Unfortunately, there were noother selling points besides the
(03:33):
love of Mamaw and Papaw.
You know they used to have anin-ground pool but, as I
mentioned, they had filled it inone or two years before and
ever since then Jacob has justreally not been very excited to
visit them that was pretty muchthe only attraction and the
neighbors, who he also callsGrandma and Grandpa.
They have a pool, but they alsohave a lot of family.
(03:56):
He would have needed to besupervised most of the time and
there was just.
It wouldn't have worked out ifhe were to visit here without us
.
So he wasn't accustomed togoing over there and it just
wasn't something we could sellhim on.
But we tried to just build itup because he had lived here
(04:16):
before until he was like sevenor eight, you know.
So we thought, well, maybe that.
But there was that time when hestayed here for several weeks
and when we picked him up he wassobbing in my arms and he did
not enjoy himself and that waspretty much the last memory that
he had.
So you know, I think he wasputting on a brave face for us,
(04:40):
because we were putting on abrave face for him.
But I don't think any of uswere really buying into it at
all.
We all knew that it wasn'tgoing to be great, but we tried.
He never really seemed toappreciate the land that we had
there in Wisconsin.
He never really was into it,even though he had all the
(05:02):
freedom in the world.
He could ride the four wheelersand we could go on walks and
you know, there was water andwoods.
It was a beautiful land, but hewas just really being miserable
all the time.
So we never thought that heappreciated it and we thought,
well, maybe it won't be such abig deal when we do move.
I mean, you know what does hecare?
Right?
And that's the kind of pit thatyou fall into sometimes, I
(05:25):
think, when you have a child whocannot really communicate with
you, because you kind of juststart thinking that he doesn't
like anything and because hecan't tell you that he does.
He can only tell you that hehates everything.
What I mean Like he's just, hisbehaviors and his actions are
very ungrateful and very unhappyand very agitated.
(05:48):
It was very rare for us to seehim in any other state unless he
was shuffling his feet in hisroom and humming in that almost
catatonic state that I told youabout.
So we thought, well, you knowwhat is it going to make a
difference for him?
I mean, he'll have more familyaround and he'll have more
(06:08):
attention from his grandmotherand stuff like that.
So maybe it'll be better, maybehe'll enjoy it more than we
will, I don't know.
So we just I mean, we didn'thave a choice, we just had to do
it.
So even though the schoolexperiences were bad there in
Wisconsin, we were a bit worriedabout having to change schools
again, but again he grew uparound here and he had great
(06:31):
experiences in the schoolsaround here.
He wouldn't be going to thesame school that he did when we
moved, but there was a reallygood chance that some of the
kids he went to school with weregoing to be at his school and
high school.
So I mean, you're going back toyour old neighborhood, going to
be at his school and highschool.
So I mean you're going back toyour old neighborhood.
It could be good, it could bebad, we don't know.
But we kind of felt a littlebit better about the schools
(06:54):
here because of how his dadadvocated for him to get a good
education system in place in thefirst place.
I don't know.
We just thought, well, it'llsuck to have to change schools.
I mean that sucks for any kid,but maybe it'll be better, maybe
it will.
So we moved here at the end ofApril and school ends in at the
(07:15):
end of May or beginning of Juneand we didn't want to get him
all set up in a new school thatyear.
I mean that's just way too much.
It's an eight hour drive to gethere from our house in
Wisconsin and he had to put upwith us packing and watch
everything just get dismantledand I'm sure that was a lot for
him and we really tried to walkhim through the process during
(07:38):
every single thing that we weredoing and we tried to stay
upbeat as he watched us pack allof our belongings and sell
everything that we could in themeantime.
It was really hard because wewere so sad and we didn't want
him to pick up on that.
We just had to do, you know, dothe best we could with it.
When we got here we tried tomake sure he was content.
(08:01):
The room that he ended uptaking was not his room when we
were living here before, so itwas kind of new for him.
I didn't like it much becauseit was in the front of the house
and the street is right thereand the windows are not great.
So I was worried about all thenoise because where we lived in
Wisconsin it was the country.
(08:22):
It was so quiet and I was alittle bit nervous about that
big change because it was hardfor me to make that big change
as well, just like if you livein the city and you move to the
country, that the silence isannoying at first, you know.
But also we thought he wouldhave a great time getting
reintroduced to all the peoplethat he knew when he was a child
(08:44):
, all the support that we havehere with extended family and I
mean just good friends of myspouse really for that, and it
didn't take long to realize thathe probably wasn't enjoying
himself here.
He did not adjust well and noneof us really did.
It was hard.
You know His behavior was notgreat while we were in Wisconsin
(09:07):
.
You may recall these storieshave been leading up to a big
event with his behavior.
It just seemed to get magnifiedonce we moved here and there
was a big transition in justbeing here because he was used
to having his grandfather andsometimes the uncle in our house
.
He was used to that.
They were very predictablebecause they didn't work.
(09:28):
They got up at a certain timevery early in the morning.
They did the same thing everyday and it didn't really disturb
him because his bedroom was wayat the other.
Early in the morning they didthe same thing every day and it
didn't really disturb himbecause his bedroom was way at
the other end of the hallway andthey didn't even have to walk
by his room.
So he got all the quiet andprivacy that he needed.
But here this house is loud,it's not really well insulated
(09:51):
and his grandmother was stillworking and she was working
third shift.
So he had to be quiet duringthe day because she was sleeping
, and that's not something heever had to deal with.
Being at our house, he couldmake all the noise he wanted,
even in the middle of the night.
Most of us didn't even knowbecause of the space in between
(10:13):
our bedrooms and everything.
Now he was having to reallywatch his P's and Q's.
He runs everywhere that he goesin this house and up the stairs
and you know he's just a stomperand a runner and he wasn't
really allowed to do thatanymore.
He's really not allowed to behimself in this house, because
his grandmother needed to sleepduring the hours that everyone
(10:35):
else is awake and then she would, of course, have two days off a
week.
Now she's up during the hoursthat she would normally work,
which is third shift, which isthe middle of the night, and she
is a stomper as well.
She takes she's very small andshe takes these fast little
(10:55):
steps and she sounds like adrunken toddler running around
the house and his room is rightat the top of the stairs, on the
way to the bathroom, on the wayto her bedroom, everyone has to
go by his room first, and theway that she stomps around the
house with no carpet on woodfloors, it was disturbing his
(11:17):
sleep, it was disturbing mysleep, it just it was a
nightmare, to be honest.
And you know just this, drunk,if you can imagine how little
babies, when they're learning towalk, they take a step and then
they take a step, and thenmaybe they stumble and they take
a few steps, boom, boom, boom,boom, and then they walk again.
Yeah, that's what it soundedlike.
You know, just boom, boom, boom, boom, boom, boom, boom, boom,
(11:37):
boom, boom, boom, boom, and allnight long, all freaking night
long.
So not only did we have to dealwith the results of him having
sleep issues still and nothaving meds, but also we had to
deal with this new thing thatwas keeping him from sleeping.
I mean, it had to be keepinghim from sleeping.
He can't tell us, but hisbehaviors got worse, so I think
(12:00):
that it affected him.
Then, when he would spend timewith her because all he ever
wanted was to spend time withhis grandmother and when he
would spend time with her, shewas laying in bed in the dark
and he would have to go in thereand lay in her bed in the dark
in the middle of the day andwatch TV just to be with her.
And that really pissed me off.
(12:22):
Because, hey, you're dealingwith sleep issues.
The first thing you need is toregulate your circadian rhythm.
You have to see the sun in themorning.
You have to see the sun in theevening before it goes down.
You got to get those differentcolor rays into your vision so
that your body can regulate.
You cannot be laying around ina pitch black room in the middle
(12:47):
of the day when you have sleepissues.
It's just not good.
But I couldn't keep him fromsnuggling on his grandmother I
mean, how cruel is that, youknow?
So that was a real struggle forus.
I wanted to tell you threethings about our move here.
And then I have a cute littlestory.
We immediately started lookinginto medical cannabis as soon as
(13:10):
we got here, and I knew thatthere was a dispensary in a
specific place because we hadseen it.
I think it was the first one.
We went over there, desperate,very, very desperate.
I mean we were haggard, we hadtears in our eyes.
It was absolute hell livingwith this child and watching him
go through his own personalhell every day.
So we were at our wits endbefore we even got to the
(13:33):
dispensary and we found out thatautism was not on the list of
approved conditions.
So we were very disheartened bythis of all conditions.
I mean, why not?
Why not?
So we gave a heartfelt storyand gave our plea.
(13:56):
We didn't know how it worked.
.
.
and I ended up working inmedical dispensaries helping
people get their cards for theirkids with autism, so I know how
it works now, but back then Ididn't know, and we thought we
could convince them to help us.
And actually the girl that wasworking there gave us a full
packet of information to applyand then said something to the
(14:17):
effect of if you really need itand you can't get it, I can help
you.
And so we were like, oh okay,and we left and in the parking
lot we kind of were looking ateach other..
.
We didn't even want to LOOK ateach other in the parking lot in
case anyone was watching us,but we were talking out of the
sides of our mouths saying didwe just, did she just offer?
(14:39):
I think she did.
Yeah, I think she just offeredto sell us some weed for our kid
?
Yeah, that was..
.
It was nice to know that sheunderstood and she was willing
to help.
We never did go that route, butthe route that we went was that
all of a sudden, my husband hadqualifying conditions.
So we took my husband to getmedical cannabis for his
(15:04):
conditions and it helped myhusband a great deal.
So I started making cookies formy husband.
I learned how to make thesecookies.
.
.
the same.
.
.
the gluten-free, sugar-freecookies that I always made and I
would include this cannabisproduct in the cookies and it
was an oil, it was called RSOand I started just making these
(15:28):
cookies for my husband, cuttingthem and putting them in his
snacks and he would have themfor breakfast and all kinds of
other stuff.
So it got to a point where Iwas looking for some kind of
something that wouldautomatically open at a certain
time in the morning and give myhusband an access to a piece of
(15:51):
cookie before he even got out ofbed, because we really needed
my husband to be medicatedbefore he talked to anyone else
in the house period because hewas so out of sorts and mean and
destructive.
And I found that there's likethis little thing you can set an
(16:13):
alarm and it'll go off and Ithink it'll talk and it opens a
little door and I think it'slike a cat food thing or a dog
thing, and so it will givesnacks at certain times.
I never ended up doing thatbecause things just progressed
so quickly in our lifestyle andin this house that it wouldn't
(16:34):
have been used as well as Ithought it would.
But I really felt like I neededit.
I felt like he needed an IV ofthe shit just to keep him in a
happy state and help him wake upbetter.
I first started out with twoand a half milligrams and that
worked for a couple weeks andthen it didn't work anymore, so
I went to five milligrams.
(16:55):
There's a little calculator youcan use online and figure all
this stuff out, and so then Ihad to increase it and increase
it and increase it and then atsome point, while I was working
in the dispensary, autism gotapproved for the medical
conditions that qualify.
So that'll be another story.
(17:16):
I can't get into that right now.
Sorry, I got off track, but thepoint was that we went and we
got turned away because theywere not serving autism at the
time and my child was not evenan adult, and it wasn't legal, I
like recreationally at the time, it was just medical in the
state, so that was 2018.
(17:37):
It was just another blow.
It felt like we got punched inthe gut Because, like I said,
all I kept saying in Wisconsinwas damn, if we could just get
to a state that has medicalcannabis, I really think it
would help him, and we were soexcited that here's the one
bright point of moving toIllinois is that we can get
medical cannabis for our son.
Walked in and they were like no, you can't, it doesn't qualify,
(18:00):
it's not a qualifying condition, sorry.
So we ended up medicating myhusband instead.
The other thing I immediatelystarted doing was looking into
theater groups again, becausethere's nothing to do here.
There is no yard, there is nopool, there is nothing, and
there was no school yet.
(18:21):
And I thought, you know, I'mgoing to get back into this
search for theater groupsbecause I feel that if he could
express himself and have acreative outlet where he could
just be an actor like he wantsto be, then, yeah, that would
maybe help him be happy.
So I was delighted to find veryquickly, within just a few days
, that there was a theater groupfor special needs people and it
(18:45):
was called the Penguin Project.
I was so happy to get thatfigured out.
I mean I was ecstatic and I gothim involved in that.
In my next episode I'll tell youhow that started out and how
that went.
And the other thing I wanted totell you is that my spouse and
I took Jacob to the grocerystore and I mentioned a long
(19:06):
time ago my theory on this andI'm going to mention it again
here.
He got to a point with publicplaces that he seemed to think
that he had to fill any verylarge space with himself and it
seemed like an awfully largetask for this little guy, even
though he's 5'10".
It just seemed like it stressedhim out so bad to be in
(19:30):
somewhere such as a big grocerystore with all this open space.
And as soon as he gets into alarge open space he just goes
crazy and starts trying to fillthe whole space.
I mean huge ceiling, you knowreally tall ceilings, big, wide
wall-to-wall space.
It seemed like he thought hewas responsible for having to
(19:53):
fill every inch of air withsound and body movements and it
was awful for all of us.
And I remember during our firstor second trip to the store
after being here.
It's just right down the road.
I had tears in my eyes and Ilooked so desperate, my spouse
looked so unhappy and, of course, jacob was doing his stuff.
(20:15):
And this woman approached me.
She's like I know what you'regoing through.
I have one as well.
My son has autism and Iunderstand how you feel and I
almost lost it.
I mean, I already had tears inmy eyes, I already felt sick and
(20:37):
in pain and could hardly walkjust from the weight of this
severe autism behavior that Iwas dealing with.
And to have someone reach outto me in that moment, it meant
so much.
But it also was like, oh mygosh, it's so obvious, wow, you
know, wow, I can't believe thatit's so obvious that she would
(21:01):
approach me like that.
And I looked at my husband andI was like did you hear that?
And he goes.
You need to go ask her what sheknows.
Does she?
Is there anything around herethat can help us?
And of course I was just shutdown completely.
I didn't even think about that.
So I went over there and askedher if she knows of any
resources and she gave us someinformation on a local parent
(21:23):
support group.
That was not something that Ihad ever found in Wisconsin it
was.
I found an autism teen group,but I hadn't found a parent
support group.
So I thought, well, that'sinteresting, I've never been to
a support group for anything.
Wow, I wonder what that's like.
It sounds like it's reallygreat.
And that was how we started ourstay here in Illinois.
(21:44):
That was within the first weekwe had all those things going on
the theater group, thedispensary and the parent
support group.
In my next episode I will tellyou all about our experiences
with each one of those.
And right now I just learnedyesterday a super cute story
again about Jacob.
(22:05):
So he took that littlesnowflake obsidian rock to camp
again on Friday and when theywere in the car on the way home,
I think, and his dad asked himdo you have your rock?
And Jacob said, oh, no,snowflake.
My spouse asked him if he knewwhere it was and Jacob indicated
(22:27):
that he wanted to go back andget it.
So they went to the park allthe way back to camp, to the
park that the kids all went to,and Jacob went directly to the
picnic table that he was sittingat and found Snowflake on the
ground right next to the picnictable.
I don't know.
I just thought that was so cute.
I mean, he's really attached tothis rock.
(22:48):
Oh, no, snowflake.
I know that school has startedfor most of you, so if you have
anything that you want to ventabout, of course you can always
contact me atcontactparentingsevereautism at
gmailcom.
And I'm no expert, of course.
I'm just a mom going through it, the same as you.
But I hope that this has helpedyou in some way.
(23:10):
Even my last episode about theIEPs and communicating with
school and all that kind ofstuff Lots of new stories coming
up.
So if you have any questions,comments, concerns or you just
want to vent, feel free tocontact me.
Also, make sure to check mypodcast page and keep up with my
social medias.
I'm still trying to get somepictures out there that I told
(23:32):
you I would get out there.
As you know, our lifestyle is alittle unpredictable and I'm
not always able to do what Iwant when I want to, but I'm
going to be posting those soon.
But check my podcast page ifyou have missed any of my
episodes.
This will be episode 65.
So if you have not heard 65episodes from me, go catch up.
Hang in there, you're asuperhero.
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