June 25, 2025 • 33 mins
Severe autism presents unique challenges during summer months, particularly increased elopement risk and the need for constant vigilance.
• Summer heat and reduced structure may trigger more elopement behaviors in autistic children
• AngelSense GPS tracking device provides location tracking and two-way communication during elopement incidents
• Children with severe autism sometimes function better when parents are not present
• Schools often lack understanding of severe autism needs and may blame parents rather than providing appropriate support
• Medication effectiveness can fluctuate dramatically, requiring specialized testing to understand metabolism issues
• Vision for creating specialized respite communities designed specifically for severe autism families
• These communities would include trusted respite, parent-trained staff, and wellness opportunities
• Parents of severely autistic children must be "everything" to their child - advocate, therapist, and protector
Check out the AngelSense GPS device link at the bottom of this episode to help protect your eloping child.
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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'm your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
This episode may seem a littlebit off track from what I
promised I would talk about lastweek, but you know how it goes.
I will get to his first day ofschool in this episode, but I
want to start off with thisfirst because this is super
(00:39):
important.
It's summer and eloping, in ourexperience, seems to increase in
the summer.
For our son, I'm not sure ifit's because he's programmed to
know he should wear more clothesin the winter, like he knows he
has to go through more effortbefore he escapes, or what.
Maybe sometimes I wonder if youknow he's just more easily
(01:01):
pissed off and irritated fromthe hot temperatures, because if
he gets hot he is very angry.
That's why I give him a buzzcut and I always make sure we
have some kind of a wateractivity nearby, you know, just
because I want him to be happyso he doesn't run and he doesn't
hurt himself and whatever.
But maybe it's the barometricpressure, the storm systems
(01:23):
coming through with the heat, Idon't know, maybe it's even
barometric pressure, the stormsystems coming through with the
heat, I don't know.
Maybe it's even something to dowith him seeing us outside more
often, I don't know.
Remember, you can always helpsupport this podcast by hitting
that little buy me a coffeebutton, and if you need links to
some of the products that workfor our family, you should be
able to find them at the bottomof every episode.
(01:44):
Products that work for ourfamily you should be able to
find them at the bottom of everyepisode.
You can always check out myhosting site, which is
psabuzzsproutcom, and you cancheck some of my links there.
Angelsense is the biggest oneright now on my mind, because
this is when we realized that weneeded something like
AngelSense and we didn't know itexisted.
So before I get into thedetails of our son's first day
(02:09):
back at school, I do want totalk about eloping.
This is really important to me.
It's very close to my heart.
It's been mentioned in oneepisode, but it definitely
deserves to be mentioned moreoften because it's one of the
biggest risks to our children'ssafety.
There is something about summerthat just is very dangerous and
(02:31):
volatile, for whatever's goingon, our son's inner world is
just bursting all the time.
You can check my link at thebottom of most episodes for the
AngelSense monitoring device.
It's really awesome.
I'll try to make a post on mysocials soon to share the
features that helped us on oneof the scariest days of our
(02:52):
lives, a day that our sondisappeared and we didn't see
him bolt.
It's one thing.
It's terrifying actually to seeyour son bolt away from you off
the property into the middle ofa busy highway with his head
straight down, not looking outfor his own safety and not being
able to catch up with him.
It's another thing completelyto go to the bathroom and know
(03:14):
that your son is there in thehouse and then to come out of
the bathroom 30 seconds laterand your child is nowhere to be
found.
That is a completely differentkind of scared, because now you
don't know which way he went.
You know it's different.
It's a completely differentthing.
First and foremost, in yourmind, the whole time is keeping
him alive.
So it's really hard to do thatwhen you don't know which
(03:37):
direction he might have evengone in and in our case he could
have gone in five differentdirections.
Actually it was really scary.
We kind of had an idea where hemight go, because we know his
interests and see he used to bevery good at remembering.
When we would take him ondemonstrations with us, when we
(03:58):
would cook for people in theirhomes, he would instantly figure
out what games and movies theyhad and then, depending on what
he was in the mood for, he wouldtell us at some other point
when we're out in the world.
He would say turn right, turnleft, here, here, there, and he
would actually be trying todirect us to the house of the
person who has the game or themovie that he has a hankering
(04:21):
for at that moment.
So we figured that he wouldhave gone in a specific
direction, because that's wherethe food is, there's a grocery
store and there are fast foodrestaurants and he knows where
stuff is.
That would make him happy if hewanted to leave.
So the only thing was whichroute did he take?
Did he take the main road ordid he go through the woods?
(04:42):
So that's what really scared us.
But we had angel sense at thetime when he escaped and we
didn't see him escape the firsttime he escaped.
We didn't have angel sense, butwe could see him and we just
couldn't stop him.
So if this is happening withyour family and you haven't yet
figured out anything to helpstop or track your child, I
(05:03):
think you should maybe check myepisode two, part three.
It's about eloping and it'spart of the let's Beat the
Severe Autism Summer Bluesseries, and at the bottom of
that and at the bottom of everyepisode I believe, there is a
link for AngelSense and it isawesome.
I'm going to show the map thatwe were provided with on our
(05:25):
phones through the app when ourchild ran away and it helped us
know exactly where to go, whatroute to take and other points
to put other people at to catchhim.
It's really helpful.
There are a lot of features onthis thing that are beneficial
for our family If you can find away to get your child to
tolerate it being either ontheir clothes or on their
(05:48):
belongings that are close tothem a lot.
That's the only thing about it,but it is lightweight and it is
small and we managed to get itand have him not really pay
attention to it.
One great feature is that it hasan intercom.
I think that's the right word.
I hope I'm not just showing myage.
I don't really think I've heardanyone say intercom in many
years.
But it does have an intercom onit.
(06:10):
Intercom normally is not greatfor many of our kids.
Sometimes it'll just piss themoff more and I wonder if that's
because they're just trying tohave a sense of autonomy.
But in an eloping or runnersituation I think the intercom
can be like an extension ofourselves, especially if you can
see where they are, like thestreet or the highway, and you
(06:32):
can't keep up with them.
You can press your button andsay watch out for cars, be
careful, wait for me.
Things like that Wait for megets our son's attention.
But it does tend to put him inplayful mode and he kind of runs
away as a joke.
So I don't know if that wouldbe a good one.
But this feature can also helpin schools.
(06:54):
You can listen to what's goingon on the bus in the classroom
and, if necessary, you can useit to let your mom voice or your
dad voice be heard, whetheryour child is audibly
overstimulated, being bullied,pushed too hard at school,
mistreated, having their needsignored.
You know my friend's young boyrecently, in just the last
(07:16):
couple months of school, therewas a time when he was actually
given the opportunity to cut hishand on a glass dish that
dropped and broke in hisclassroom.
What, why, why would there be aglass dish in a classroom like
this for a child with severeautism?
(07:38):
See, that's why we need eyesand ears.
When we can't be there, wecan't go to school with them.
For many reasons that would notbe great, but we're always
halfway in the dark, aren't we?
We're left wondering about thisshit, the events around leading
up to and after what's actuallyreported to us.
(07:58):
That drives me absolutely nuts,because how can you just
contact me and tell me my childis being psychotic and I have to
come and get him after he'sbeen in school for an hour and a
half, but you can't tell me why.
Why is he being psychotic?
I didn't send him to you beingpsychotic.
(08:21):
Did he arrive acting psychotic?
No, okay, what triggered him?
What happened?
You never get that damn story.
No one ever seems to know.
They don't have the answers, dothey Not?
In our case, they don't.
Oh, I don't know.
Everything was going just fineand then he just starts slamming
his head on the wall.
Well, there's something.
(08:42):
There's something.
You may not realize it becauseyou don't know this child like I
know this child, but he's notgoing to be standing there just
hunky-dory and then, for noreason at all, go over and start
injuring himself.
So you know we don't get theactual report.
So now we've got meltdowns,sibs eloping, attacking, and
(09:06):
they're just reports of our kidsjust doing their autism thing
unprovoked.
And I just don't believe that.
To be fair, probably 87% of thetime I don't believe that he is
unprovoked.
It's just it could be thelittlest things.
But if we have ears, if we havean intercom on his person in the
(09:30):
same room as him and we canhear his own noises, you know,
you can recognize your child'sflapping and humming, you can
recognize that stuff if you havethe opportunity, and then we
would know before we even gotthe phone call.
We would probably be able tocall them up.
Hey, I can hear this going on.
Let me tell you what is justhappening to my child right now.
(09:51):
He's gonna freak out, or he'sprobably freaking out right now,
and I heard it.
This is why Maybe you didn'tnotice it, but something silly
happened and it set him off.
If there is a weird rumble onthis episode, there is some kind
of car with a big muffler issue.
I don't know.
You know everyone thinks it'sreally cool, but when you're in
a school, we would have beenbetter informed, because what
(10:25):
triggers our kids can be easilyoverlooked by everyone else.
It's considered normal, maybe,and not worth remembering or
reporting, and it meanseverything to our kids.
That's how it usually happens.
What most people considernothing is a big deal to our
kids and then not only are theyconfronted with.
This makes me veryuncomfortable.
(10:46):
I don't like this, but theperson here who I know is in
charge or supposed to be helpingme doesn't even care.
They don't even recognize mydiscomfort, they're making it
worse.
Or you know, I mean there's allkinds of stuff that goes on
with a nonverbal child and youhave to be tuned into that, and
these people who take care ofthe environments around our
children are often not able tobe tuned into that.
(11:08):
So that's why we get thehalf-assed reports and missing
information.
When we get reports, that stuffmeans everything to our kids.
It means everything to us.
There's one thing I want tomention before I get into
Jacob's return to school.
After he said yes, we keptasking him.
Hopefully you remember that'swhere we left off in the last
episode.
I can't remember the eventsaround this realization that I
(11:32):
had, and I think there are a fewreasons for that.
I think it's because, first ofall, it freaked me out to even
consider it.
You know, you have one of thoserealizations and you're like,
oh shit, no, I don't want tothink about that.
And also, because it freaked meout, I didn't talk about it
right away.
Instead, I purposely observedover a short period of time just
(11:53):
to make sure it wasn't a fluke,make sure I'm not seeing things
incorrectly, jumping toconclusions.
And then you know, when I didmention it privately to my
spouse, he kind of scoffed andblew it off and we didn't
discuss it much further, eventhough I brought it up
repeatedly.
I realized that you know, thatcould be a way of deflecting,
(12:14):
possibly because it's toopainful to consider.
But I do remember where we were.
We were at our home inWisconsin.
I had been observing his actions, expressions, speech and
interactions with others,because I had him going to the
different therapies.
I would see him with familymembers as well, basically just
(12:37):
some of the uncles once in awhile and the grandfather.
But I always did get anopportunity to remove myself
from the situation so that hewas just interacting with other
people and not me.
I think I mentioned to you whenI would take him to the autism
swim night.
I would go and hide upstairsbehind some plants and this is
(12:58):
why I would watch him with allof those people and the other
kids, but mostly the adults.
You know he doesn't really dopeers.
So anyway, I'm observing all ofthese actions, expressions,
speech and interactions withothers and sadly I noticed
immediate decline in all areasas soon as he knew that I or my
(13:20):
spouse or both of us wereanywhere within earshot.
I just got this whisper in myear that made my heart drop.
We are hindering his progress.
It's obvious he seems todefault to this less developed,
less intelligent, more needyversion of himself.
I noticed all of this before.
He lost all of his words andskills when he turned 15.
(13:42):
I just kept observing it.
He would act like a completelydifferent dude with all of the
therapists, except for the ladyat the CP center, because he was
going through that screamingand crying phase where he just
would not stop.
That was really hard for me todeal with, because why, why are
you?
Why is he doing that?
I don't like baby him, you know.
(14:05):
I noticed when he was abouteight or nine that I was babying
him too much.
I got to where I could tell bywhere his eyes looked what he
needed and I would give it tohim.
I could read the kid's needsand he didn't have to
communicate.
And I realized one day whoa,this isn't good.
So I deliberately took steps tomake sure that he had to
(14:27):
communicate what he wanted, whathe needed, the best that he
could, and I would still betasked with deciphering
everything, but he had to atleast make the effort.
So I wasn't babying him, Iwasn't coddling him, I was
trying to make him function tothe best of his ability and I
don't understand why he does somuch better with other people.
(14:49):
Maybe it's just because heknows we have expectations of
him and he thinks other peopledon't.
I don't understand it.
Well, the lady at the autismnonprofit place said that he is
seeking negative attention.
I don't understand it.
Well, the lady at the autismnon-profit place said that he is
seeking negative attention.
I don't know if I actually toldyou that All of the behaviors
that I've mentioned so far, andthat I will continue mentioning
everything negative is that hewas doing something called
(15:11):
negative attention seekingbehaviors.
I said we give him all the lovein the world.
We give him everything that heneeds.
He's well protected, he's safe,he's loved.
We try to have fun with him, wegroom him, we give him spa
nights, we, you know like whywould you need more attention
and why would you seek negativeattention?
(15:32):
But she said it's because helikes living on the edge of
danger and disaster and that'swhere he is happy and that's
where he is happy and that'swhere he'll keep everyone else
and for us it's stress and forhim it's fun.
He feels alive.
It's not very fair at all, butanyway, I just felt for many
years that we were hindering hisprogress.
But just the other day I went tovisit him because I'm still at
(15:53):
the camper and his grandpa toldme again that when my spouse and
I are not there, or he thinkswe're not there, he will not
wrap his lips around his teethto talk to his grandpa and if he
does, his grandpa reminds himthat he can't understand him and
then he stops and he does notdo any of the behaviors that we
constantly have to tell him tostop doing, and he only does
(16:16):
that with us, and Tweedledumconfirms that all the time.
This is not a new development.
He is always pulling me asideand saying when you're not here
he is good.
When you're not here, I don'thave any trouble with him at all
, and I know he does have alittle, because that's what the
cannabis medicine exists for.
But he's always telling me allthe stuff that you have to get
(16:37):
on him about and tell him toleave you alone and stop.
Stop, stop all that stuff.
He doesn't do that when you'renot here, it's only when you
guys are here, and that's theonly confirmation I have is from
him.
But I know it's true and it'sbeen true, for I think, going on
10 years and it is gettingreally old.
So anyway, I believe that heagreed to go back to school just
(17:00):
before he turned 16, and thefirst day back, his very first
day back at school, the teacherswere already scorning us and
blaming us instantly forquote-unquote making him worse.
You made him worse byhomeschooling him.
You made him worse and, lookingback, I think that was their
(17:22):
way of trying to make us feelthat we needed them to help our
son, and that helps them sweepthe previous abuse under the rug
.
That's what I think I mean.
My spouse went in personallyagain and addressed our child's
homeroom classmates again andexplained that our son is
awesome and fun but hedefinitely has high needs.
(17:45):
He explained the traits of ourson's autism and he motivated
the kids to kind of mentor himin a way.
And this is because the schoolforced our son into mainstream
classrooms.
They just completely ignoredour son's disabilities.
We had IEPs galore from thestart this time, but this time
we had the help of the AutismWhisperer lady as an advocate,
(18:08):
so she would get copied theemails and she would show up to
every meeting.
She told us how often we cancall emergency IEPs and she
recommended that we do it and doit and do it because our son
was being disrespected andmishandled For sure.
The situation was wrong whenthey accused us instantly of
making him worse by pulling himout of school.
(18:31):
I asked them to show me whatyou're talking about.
Let me see the school recordsof what you did for him before.
Now see, I knew that he lost hiswords and stuff, but I also
knew that wasn't my fault and Ieducated him as much as he would
allow me to, but I didn't forceit on him.
I'm not.
I mean, what's he going tolearn if you force him to sit
there, you know.
So we tried to teach him reallife stuff too, that he also
(18:55):
didn't want to learn.
But other than that, like okay,it wasn't our fault and I know
that because there's what is hername?
Mary oh, I've got it.
Mary Barbara or Mary Barbera, Idon't know how you say it she's
on YouTube.
She's the one.
I have recently started seeingher on social media again,
probably on Instagram, and Ifirst found her on YouTube nine
(19:18):
or 10 years ago when he startedchanging and acting out and I
was looking for guidance.
She's the one who has a videotalking about how, when these
kids turn 15, there's a reallygood chance that they're going
to lose their skills.
I found that video already.
I knew it wasn't my fault and Iknew I didn't make him worse.
I didn't, first of all, Ididn't make him worse.
(19:39):
I didn't, first of all, Ididn't abuse him while he was at
home.
He got abused while he was atschool.
So what the hell?
How Really I made him worse.
Okay, that was reallyirresponsible of them, I thought
, and I asked them to producesome records from the previous
years at school and theycouldn't.
He had.
I believe he was in school fora year and a half before we
(20:01):
pulled him out, I'm pretty sure,because they should have had
the transcripts from his otherschool.
I mean, there was just noreason for them to tell me that
they don't have the records.
They don't have any of hisrecords at all and it's because
we pulled him out.
I don't, I don't know.
That doesn't seem right to me.
I don't think so.
I just don't.
(20:22):
I asked them and they said thatthey're supposed to keep the
records until he's aged out.
And he definitely wasn't agedout, he was 15.
I don't know, we kind of gotscrewed on that whole school
thing, but they did tell ustheir very first day that we
screwed him up and made himworse.
So, with these IEPs andeverything, they did start
making changes and we had somereally interesting things happen
(20:44):
while he was in school.
That girl was still there andthey still made him sit next to
her in the classroom.
I didn't, I don't even know, Idon't have the words of how
disrespectful that is to myson's needs and we just they
would not budge on this.
I mean, you know what do?
You have 20, 30 kids in aclassroom and you can't move
(21:06):
this girl or put my son next tosomebody else who's not
overbearing and a bully, I don'tknow.
I just I hated that school.
They totally disrespected ourfamily, our son.
I just don't understand whythey would put him through
traumatic situations every day,consciously.
It's like the grandparents whopump the kids full of sugar and
then send them back home to theparents, except it's much worse
him through traumatic situationsevery day, consciously.
It's like the grandparents whopump the kids full of sugar and
(21:27):
then send them back home to theparents.
Except it's much worse whenit's just you're disrespecting a
child who can't speak up forhimself.
It was really a terribleexperience, even though there
were some cool things that werehappening.
Overall, it was demeaning anddegrading to our son to have to
be in that situation and forthem to insist that he, because
(21:51):
of his age, get filtered intomainstream classrooms just so he
could have to leave themainstream classroom
periodically to go and get histherapies, to go and get his
therapies and of course, nowthere's a 40 minute adjustment
for that.
You know it was just a waste ofresources and there were so
(22:13):
many appalling things which aregoing to be coming up in future
episodes.
Now that we're on this subject,lots of bullshit going on at
that school, but the AutismWhisperer never actually
suggested that we do anythingdrastic.
But you know, the more I talkabout it I feel like we should
have and I suppose when you havethis situation like you do and
like we do, you're always goingto beat yourself up and should
(22:35):
have, would have, could have andall that stuff.
And the fact is we're doing thebest we can.
All of us are unchartedterritory here and it doesn't
matter what any other parentsays about their experience in
schools with severe autism.
You're going to go through yourown stuff.
You know it might help to getbackstories and ideas of how to
respond and stuff like that.
(22:56):
But we're all going to be facedwith separate challenges and
we're all going to get down onourselves about it because we
are tasked with being everythingto this child.
Everything, every singlefunction that has to take place
for this child to have acomfortable life and to have
rights and freedoms, therapies,supplies.
We have to do all of that.
(23:16):
We're not just mom and dad,we're therapists and doctors and
nurses.
We're everything.
So don't get down on yourselfwhen you run into people
mistreating your kid.
You're doing the best that youcan, you cannot possibly foresee
everything that the world isgoing to throw at your kid.
One thing you can do, which Iwish I could have done back then
, is have an intercom type thingon your child.
(23:38):
I mean, if you're trying tocatch some people up in some
bullshit, you know they'remistreating your child, that is
definitely the way to go.
But the biggest thing aboutthat angel sense thing for us is
just knowing where he's at ifhe runs and being able to
contact neighbors and people whomay be available in the local
area to go and block his path.
(24:00):
In my next episode I'm going toreveal some of the cool things
and some of the messed up thingsthat started happening at the
school for our son.
If you haven't heard my episodeabout the severe autism summer
blues and you are having a toughtime this summer, it might help
you to go listen to at leastthe first episode.
(24:20):
Well, they're all good.
One is about ways that you canfill in for the loss of the
routine once school lets out,and the next one, I believe, is
about taking care of yourself asthe caregiver during this time.
And then the third one is aboutsolutions for eloping and about
my story personallyexperiencing loping.
(24:41):
That might help you.
But 4th of July is a completelydifferent story, obviously, with
the threat of the fireworks andeverything.
But the Mother's Day and theFather's Day and the Memorial
Day have all passed and thoseare the holidays when a lot of
us get shunned and our kiddoesn't get to go to the pool or
get to go to the pool party orget to go to some get-together.
You know they say we can come,but you know, can you leave your
(25:03):
kid with someone else?
We don't want your child overhere.
All of that really emotionallydamaging stuff for us parents is
over, so that's a plus.
You know you only have a fewmore events to go and then it'll
be fall in no time.
It really is laborious in thesummer trying to keep these kids
(25:25):
happy and keep them fromrunning and sometimes, no matter
what you do, even if it's theirfavorite thing on earth, they
will not be happy and all youcan do is leave them alone and
hope to God they don't run.
And although ours is prettysedated right now with his
cannabis medicine, we have notforgotten we actually have an
appointment for our son.
I wanted to mention this becauseI didn't know it was a thing.
I feel like I should have knownit was a thing, but I didn't
(25:46):
know it was a thing.
I have been complaining to hisdoctor about the medicine.
He just doesn't seem to bephased by his medicine.
I mean, he's obviously waybetter than he was before he got
on it.
But she has changed hismedicine and he's still not cool
.
It's like it's not making adifference for him at all.
(26:07):
He almost seems more agitatedand he needs cannabis more often
, and I think that is just aload of crap.
I don't think that he shouldneed cannabis that often.
These drugs, they should work.
The cannabis is supposed tostay in your system for six to
eight hours and you know thereare days where he is just
behavior wise.
He's demanding that he get hiscannabis medicine every two
(26:30):
hours.
It sometimes it takes threehours for it to work and it's
just ridiculous.
You can tell that he'smedicated with cannabis, you can
tell, but then it instantlywears off or I don't know.
It just seems like he fights itsometimes and he just wants
more and more and more.
I don't know what's going on.
So anyway, I've beencomplaining to the doctor about
that and we're going in inAugust and she's going to do I
(26:51):
believe it's a saliva test tosee how he is metabolizing his
medicines.
I feel like they said it's agene test.
I don't, I don't remember,though I'll have to let you know
.
But I am very curious aboutthat because he does have a
pretty high metabolism and maybesome of it's, you know,
inherited from his dad, but someof it is because of all his
flapping and stimming andeverything, and he is starting
(27:14):
to get a little bit of a potbelly.
Now he's getting his 24 yearold pot belly.
We're going to find out, we'llsee what's happening and, you
know, maybe it's a food thing,maybe it's a metabolism thing,
I'm not sure.
But soon as we get answers inAugust about that, I will
definitely fill you in.
I think about all of you guys,even though I don't know you.
I talked to a couple of you andI just am always thinking of
(27:37):
our severe autism tribe membersin the world, because we're all
so isolated and I just feel likewe could do better.
I feel like these safer respitecommunities that I'm talking
about building are justabsolutely necessary for us,
just for our health alone, forthe kids and the parents the
(27:58):
health benefits alone of havinga community like that, with
designated areas for forest,bathing and outdoor wellness and
other wellness programs, andthe educational aspects of the
community with the Montessoriprinciples mixed with therapy,
and I really think our kidscould thrive if people cared
(28:20):
enough to tailor experiences tothem.
I don't really expect that myson would ever be able to
actually have a job, and I get alot of flack for that from
other people out in the worldwho don't have a kid like mine.
Oh, you shouldn't limit him andall that stuff.
Whatever I you know he can'teven wash his hands, come on.
(28:40):
But I do think that he enjoyslearning if it's tailored to his
unique learning style and itdoesn't have to be long blocks
of time, just little experiences.
That's what he needs.
He doesn't need to actually beeducated, he needs to experience
things that give him theeducation and you know that
(29:01):
blueprint that I laid out in myepisode about it.
I really don't think I'mmissing anything.
But I would love to hear fromyou as the parents.
Your kids are different, yourneeds are different.
What would make a perfectrespite community for you Other
than actually getting respitefrom parents you can trust,
because you guys are bonded andyou understand each other's kids
and all of that, and you get totrain the therapists and
(29:25):
educators who come into thecommunity.
Other than that great shit,what do you think would make
your life so much better?
I mean, we've already talkedabout the opportunity for the
parents to get back to work orto work within the community
that we create by providingtheir own services, because all
of our kids will be better caredfor and watched over and will
(29:48):
have access to health andwellness opportunities and
modalities and no loud vehicles.
I don't know if I told you thatpart, but there's a place where
you park your vehicle and thenyou take a golf cart to your
little community.
I mean, I pretty much.
I think we've thought ofeverything really, just because
of what would make our lives inour family the three of us what
(30:10):
would be perfect?
Trusted respite would make ahuge difference.
Trusted therapists andeducators who are trained about
my kid by me and my husbandwould be perfect.
Would be perfect Someone totake care of healthy food
options being made available forus easily, without having to
(30:30):
drive an hour in a circle to hitfour different stores and maybe
get what my son needs and theopportunity to work some land,
grow some food, hit the sauna,hit the gym, maybe learn yoga or
teach yoga if that's your thing.
You know just some hobbies.
And hey, with everything thatyou've lost so far, what would
make it worth it to promote anidea like that for you?
(30:53):
I would love to hear your ideas.
I would work it into myblueprint I'm still working on
the topography of it andeverything to get into the video
that goes along with the audiothat you heard.
But I am not kidding about this.
I've got my eye on a campground.
Get into the video that goesalong with the audio that you
heard.
But I am not kidding about this.
I've got my eye on a campground.
It's been available for a whileand they're family oriented
anyway, family owned andeverything I just need.
(31:13):
I don't want investors because Idon't want to have to promise
them something in return.
I would love philanthropists,donations, to help me reach my
goal to get this campground andto develop the community, the
respite community, within thatcampground.
Why a campground?
Because it's already there.
The land is already there for areason.
(31:34):
It's obviously going to be in abeautiful, fun, serene place in
nature and it's already turninga profit and the extra land is
for me to work with and offer adifferent type of community
living opportunity formarginalized families like ours
who are dealing with severeautism.
The recreation is already there.
(31:55):
We just have to expand upon itand then provide all of the
things that are missing out ofour lives.
Your life is pretty freakingdrab, right, and it's scary
because people mistreat your kid.
Look, I don't have to go on andon, you already know.
But if you're not familiar withthe Safer Lifestyles Blueprint
for Respite Communities that Ihave come up with, please go
(32:17):
listen to that episode.
It's possibly episode 57.
I'm sorry, I don't know whichone it is.
I really should know that, butI thought it was 58.
But you can't miss it.
If you go and get a list of myepisodes, it says Safer
Lifestyles.
Anyway, please go check thatout and please drop me a line if
you have any suggestions that Ican include in the blueprint
(32:39):
for this community idea.
I really, really, really wantto get the flagship one done and
opened and prove that this isthe way to go for us.
We deserve it, we need it, ourkids, you know.
This allows for long-termplanning.
There's a huge benefit to thisHang in there, you're a
superhero.
Hello and welcome to the Parenting Severe Autism
podcast.
I'm your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
This episode may seem a littlebit off track from what I
promised I would talk about lastweek, but you know how it goes.
I will get to his first day ofschool in this episode, but I
want to start off with thisfirst because this is super
(00:39):
important.
It's summer and eloping, in ourexperience, seems to increase in
the summer.
For our son, I'm not sure ifit's because he's programmed to
know he should wear more clothesin the winter, like he knows he
has to go through more effortbefore he escapes, or what.
Maybe sometimes I wonder if youknow he's just more easily
(01:01):
pissed off and irritated fromthe hot temperatures, because if
he gets hot he is very angry.
That's why I give him a buzzcut and I always make sure we
have some kind of a wateractivity nearby, you know, just
because I want him to be happyso he doesn't run and he doesn't
hurt himself and whatever.
But maybe it's the barometricpressure, the storm systems
(01:23):
coming through with the heat, Idon't know, maybe it's even
barometric pressure, the stormsystems coming through with the
heat, I don't know.
Maybe it's even something to dowith him seeing us outside more
often, I don't know.
Remember, you can always helpsupport this podcast by hitting
that little buy me a coffeebutton, and if you need links to
some of the products that workfor our family, you should be
able to find them at the bottomof every episode.
(01:44):
Products that work for ourfamily you should be able to
find them at the bottom of everyepisode.
You can always check out myhosting site, which is
psabuzzsproutcom, and you cancheck some of my links there.
Angelsense is the biggest oneright now on my mind, because
this is when we realized that weneeded something like
AngelSense and we didn't know itexisted.
So before I get into thedetails of our son's first day
(02:09):
back at school, I do want totalk about eloping.
This is really important to me.
It's very close to my heart.
It's been mentioned in oneepisode, but it definitely
deserves to be mentioned moreoften because it's one of the
biggest risks to our children'ssafety.
There is something about summerthat just is very dangerous and
(02:31):
volatile, for whatever's goingon, our son's inner world is
just bursting all the time.
You can check my link at thebottom of most episodes for the
AngelSense monitoring device.
It's really awesome.
I'll try to make a post on mysocials soon to share the
features that helped us on oneof the scariest days of our
(02:52):
lives, a day that our sondisappeared and we didn't see
him bolt.
It's one thing.
It's terrifying actually to seeyour son bolt away from you off
the property into the middle ofa busy highway with his head
straight down, not looking outfor his own safety and not being
able to catch up with him.
It's another thing completelyto go to the bathroom and know
(03:14):
that your son is there in thehouse and then to come out of
the bathroom 30 seconds laterand your child is nowhere to be
found.
That is a completely differentkind of scared, because now you
don't know which way he went.
You know it's different.
It's a completely differentthing.
First and foremost, in yourmind, the whole time is keeping
him alive.
So it's really hard to do thatwhen you don't know which
(03:37):
direction he might have evengone in and in our case he could
have gone in five differentdirections.
Actually it was really scary.
We kind of had an idea where hemight go, because we know his
interests and see he used to bevery good at remembering.
When we would take him ondemonstrations with us, when we
(03:58):
would cook for people in theirhomes, he would instantly figure
out what games and movies theyhad and then, depending on what
he was in the mood for, he wouldtell us at some other point
when we're out in the world.
He would say turn right, turnleft, here, here, there, and he
would actually be trying todirect us to the house of the
person who has the game or themovie that he has a hankering
(04:21):
for at that moment.
So we figured that he wouldhave gone in a specific
direction, because that's wherethe food is, there's a grocery
store and there are fast foodrestaurants and he knows where
stuff is.
That would make him happy if hewanted to leave.
So the only thing was whichroute did he take?
Did he take the main road ordid he go through the woods?
(04:42):
So that's what really scared us.
But we had angel sense at thetime when he escaped and we
didn't see him escape the firsttime he escaped.
We didn't have angel sense, butwe could see him and we just
couldn't stop him.
So if this is happening withyour family and you haven't yet
figured out anything to helpstop or track your child, I
(05:03):
think you should maybe check myepisode two, part three.
It's about eloping and it'spart of the let's Beat the
Severe Autism Summer Bluesseries, and at the bottom of
that and at the bottom of everyepisode I believe, there is a
link for AngelSense and it isawesome.
I'm going to show the map thatwe were provided with on our
(05:25):
phones through the app when ourchild ran away and it helped us
know exactly where to go, whatroute to take and other points
to put other people at to catchhim.
It's really helpful.
There are a lot of features onthis thing that are beneficial
for our family If you can find away to get your child to
tolerate it being either ontheir clothes or on their
(05:48):
belongings that are close tothem a lot.
That's the only thing about it,but it is lightweight and it is
small and we managed to get itand have him not really pay
attention to it.
One great feature is that it hasan intercom.
I think that's the right word.
I hope I'm not just showing myage.
I don't really think I've heardanyone say intercom in many
years.
But it does have an intercom onit.
(06:10):
Intercom normally is not greatfor many of our kids.
Sometimes it'll just piss themoff more and I wonder if that's
because they're just trying tohave a sense of autonomy.
But in an eloping or runnersituation I think the intercom
can be like an extension ofourselves, especially if you can
see where they are, like thestreet or the highway, and you
(06:32):
can't keep up with them.
You can press your button andsay watch out for cars, be
careful, wait for me.
Things like that Wait for megets our son's attention.
But it does tend to put him inplayful mode and he kind of runs
away as a joke.
So I don't know if that wouldbe a good one.
But this feature can also helpin schools.
(06:54):
You can listen to what's goingon on the bus in the classroom
and, if necessary, you can useit to let your mom voice or your
dad voice be heard, whetheryour child is audibly
overstimulated, being bullied,pushed too hard at school,
mistreated, having their needsignored.
You know my friend's young boyrecently, in just the last
(07:16):
couple months of school, therewas a time when he was actually
given the opportunity to cut hishand on a glass dish that
dropped and broke in hisclassroom.
What, why, why would there be aglass dish in a classroom like
this for a child with severeautism?
(07:38):
See, that's why we need eyesand ears.
When we can't be there, wecan't go to school with them.
For many reasons that would notbe great, but we're always
halfway in the dark, aren't we?
We're left wondering about thisshit, the events around leading
up to and after what's actuallyreported to us.
(07:58):
That drives me absolutely nuts,because how can you just
contact me and tell me my childis being psychotic and I have to
come and get him after he'sbeen in school for an hour and a
half, but you can't tell me why.
Why is he being psychotic?
I didn't send him to you beingpsychotic.
(08:21):
Did he arrive acting psychotic?
No, okay, what triggered him?
What happened?
You never get that damn story.
No one ever seems to know.
They don't have the answers, dothey Not?
In our case, they don't.
Oh, I don't know.
Everything was going just fineand then he just starts slamming
his head on the wall.
Well, there's something.
(08:42):
There's something.
You may not realize it becauseyou don't know this child like I
know this child, but he's notgoing to be standing there just
hunky-dory and then, for noreason at all, go over and start
injuring himself.
So you know we don't get theactual report.
So now we've got meltdowns,sibs eloping, attacking, and
(09:06):
they're just reports of our kidsjust doing their autism thing
unprovoked.
And I just don't believe that.
To be fair, probably 87% of thetime I don't believe that he is
unprovoked.
It's just it could be thelittlest things.
But if we have ears, if we havean intercom on his person in the
(09:30):
same room as him and we canhear his own noises, you know,
you can recognize your child'sflapping and humming, you can
recognize that stuff if you havethe opportunity, and then we
would know before we even gotthe phone call.
We would probably be able tocall them up.
Hey, I can hear this going on.
Let me tell you what is justhappening to my child right now.
(09:51):
He's gonna freak out, or he'sprobably freaking out right now,
and I heard it.
This is why Maybe you didn'tnotice it, but something silly
happened and it set him off.
If there is a weird rumble onthis episode, there is some kind
of car with a big muffler issue.
I don't know.
You know everyone thinks it'sreally cool, but when you're in
a school, we would have beenbetter informed, because what
(10:25):
triggers our kids can be easilyoverlooked by everyone else.
It's considered normal, maybe,and not worth remembering or
reporting, and it meanseverything to our kids.
That's how it usually happens.
What most people considernothing is a big deal to our
kids and then not only are theyconfronted with.
This makes me veryuncomfortable.
(10:46):
I don't like this, but theperson here who I know is in
charge or supposed to be helpingme doesn't even care.
They don't even recognize mydiscomfort, they're making it
worse.
Or you know, I mean there's allkinds of stuff that goes on
with a nonverbal child and youhave to be tuned into that, and
these people who take care ofthe environments around our
children are often not able tobe tuned into that.
(11:08):
So that's why we get thehalf-assed reports and missing
information.
When we get reports, that stuffmeans everything to our kids.
It means everything to us.
There's one thing I want tomention before I get into
Jacob's return to school.
After he said yes, we keptasking him.
Hopefully you remember that'swhere we left off in the last
episode.
I can't remember the eventsaround this realization that I
(11:32):
had, and I think there are a fewreasons for that.
I think it's because, first ofall, it freaked me out to even
consider it.
You know, you have one of thoserealizations and you're like,
oh shit, no, I don't want tothink about that.
And also, because it freaked meout, I didn't talk about it
right away.
Instead, I purposely observedover a short period of time just
(11:53):
to make sure it wasn't a fluke,make sure I'm not seeing things
incorrectly, jumping toconclusions.
And then you know, when I didmention it privately to my
spouse, he kind of scoffed andblew it off and we didn't
discuss it much further, eventhough I brought it up
repeatedly.
I realized that you know, thatcould be a way of deflecting,
(12:14):
possibly because it's toopainful to consider.
But I do remember where we were.
We were at our home inWisconsin.
I had been observing his actions, expressions, speech and
interactions with others,because I had him going to the
different therapies.
I would see him with familymembers as well, basically just
(12:37):
some of the uncles once in awhile and the grandfather.
But I always did get anopportunity to remove myself
from the situation so that hewas just interacting with other
people and not me.
I think I mentioned to you whenI would take him to the autism
swim night.
I would go and hide upstairsbehind some plants and this is
(12:58):
why I would watch him with allof those people and the other
kids, but mostly the adults.
You know he doesn't really dopeers.
So anyway, I'm observing all ofthese actions, expressions,
speech and interactions withothers and sadly I noticed
immediate decline in all areasas soon as he knew that I or my
(13:20):
spouse or both of us wereanywhere within earshot.
I just got this whisper in myear that made my heart drop.
We are hindering his progress.
It's obvious he seems todefault to this less developed,
less intelligent, more needyversion of himself.
I noticed all of this before.
He lost all of his words andskills when he turned 15.
(13:42):
I just kept observing it.
He would act like a completelydifferent dude with all of the
therapists, except for the ladyat the CP center, because he was
going through that screamingand crying phase where he just
would not stop.
That was really hard for me todeal with, because why, why are
you?
Why is he doing that?
I don't like baby him, you know.
(14:05):
I noticed when he was abouteight or nine that I was babying
him too much.
I got to where I could tell bywhere his eyes looked what he
needed and I would give it tohim.
I could read the kid's needsand he didn't have to
communicate.
And I realized one day whoa,this isn't good.
So I deliberately took steps tomake sure that he had to
(14:27):
communicate what he wanted, whathe needed, the best that he
could, and I would still betasked with deciphering
everything, but he had to atleast make the effort.
So I wasn't babying him, Iwasn't coddling him, I was
trying to make him function tothe best of his ability and I
don't understand why he does somuch better with other people.
(14:49):
Maybe it's just because heknows we have expectations of
him and he thinks other peopledon't.
I don't understand it.
Well, the lady at the autismnonprofit place said that he is
seeking negative attention.
I don't understand it.
Well, the lady at the autismnon-profit place said that he is
seeking negative attention.
I don't know if I actually toldyou that All of the behaviors
that I've mentioned so far, andthat I will continue mentioning
everything negative is that hewas doing something called
(15:11):
negative attention seekingbehaviors.
I said we give him all the lovein the world.
We give him everything that heneeds.
He's well protected, he's safe,he's loved.
We try to have fun with him, wegroom him, we give him spa
nights, we, you know like whywould you need more attention
and why would you seek negativeattention?
(15:32):
But she said it's because helikes living on the edge of
danger and disaster and that'swhere he is happy and that's
where he is happy and that'swhere he'll keep everyone else
and for us it's stress and forhim it's fun.
He feels alive.
It's not very fair at all, butanyway, I just felt for many
years that we were hindering hisprogress.
But just the other day I went tovisit him because I'm still at
(15:53):
the camper and his grandpa toldme again that when my spouse and
I are not there, or he thinkswe're not there, he will not
wrap his lips around his teethto talk to his grandpa and if he
does, his grandpa reminds himthat he can't understand him and
then he stops and he does notdo any of the behaviors that we
constantly have to tell him tostop doing, and he only does
(16:16):
that with us, and Tweedledumconfirms that all the time.
This is not a new development.
He is always pulling me asideand saying when you're not here
he is good.
When you're not here, I don'thave any trouble with him at all
, and I know he does have alittle, because that's what the
cannabis medicine exists for.
But he's always telling me allthe stuff that you have to get
(16:37):
on him about and tell him toleave you alone and stop.
Stop, stop all that stuff.
He doesn't do that when you'renot here, it's only when you
guys are here, and that's theonly confirmation I have is from
him.
But I know it's true and it'sbeen true, for I think, going on
10 years and it is gettingreally old.
So anyway, I believe that heagreed to go back to school just
(17:00):
before he turned 16, and thefirst day back, his very first
day back at school, the teacherswere already scorning us and
blaming us instantly forquote-unquote making him worse.
You made him worse byhomeschooling him.
You made him worse and, lookingback, I think that was their
(17:22):
way of trying to make us feelthat we needed them to help our
son, and that helps them sweepthe previous abuse under the rug
.
That's what I think I mean.
My spouse went in personallyagain and addressed our child's
homeroom classmates again andexplained that our son is
awesome and fun but hedefinitely has high needs.
(17:45):
He explained the traits of ourson's autism and he motivated
the kids to kind of mentor himin a way.
And this is because the schoolforced our son into mainstream
classrooms.
They just completely ignoredour son's disabilities.
We had IEPs galore from thestart this time, but this time
we had the help of the AutismWhisperer lady as an advocate,
(18:08):
so she would get copied theemails and she would show up to
every meeting.
She told us how often we cancall emergency IEPs and she
recommended that we do it and doit and do it because our son
was being disrespected andmishandled For sure.
The situation was wrong whenthey accused us instantly of
making him worse by pulling himout of school.
(18:31):
I asked them to show me whatyou're talking about.
Let me see the school recordsof what you did for him before.
Now see, I knew that he lost hiswords and stuff, but I also
knew that wasn't my fault and Ieducated him as much as he would
allow me to, but I didn't forceit on him.
I'm not.
I mean, what's he going tolearn if you force him to sit
there, you know.
So we tried to teach him reallife stuff too, that he also
(18:55):
didn't want to learn.
But other than that, like okay,it wasn't our fault and I know
that because there's what is hername?
Mary oh, I've got it.
Mary Barbara or Mary Barbera, Idon't know how you say it she's
on YouTube.
She's the one.
I have recently started seeingher on social media again,
probably on Instagram, and Ifirst found her on YouTube nine
(19:18):
or 10 years ago when he startedchanging and acting out and I
was looking for guidance.
She's the one who has a videotalking about how, when these
kids turn 15, there's a reallygood chance that they're going
to lose their skills.
I found that video already.
I knew it wasn't my fault and Iknew I didn't make him worse.
I didn't, first of all, Ididn't make him worse.
(19:39):
I didn't, first of all, Ididn't abuse him while he was at
home.
He got abused while he was atschool.
So what the hell?
How Really I made him worse.
Okay, that was reallyirresponsible of them, I thought
, and I asked them to producesome records from the previous
years at school and theycouldn't.
He had.
I believe he was in school fora year and a half before we
(20:01):
pulled him out, I'm pretty sure,because they should have had
the transcripts from his otherschool.
I mean, there was just noreason for them to tell me that
they don't have the records.
They don't have any of hisrecords at all and it's because
we pulled him out.
I don't, I don't know.
That doesn't seem right to me.
I don't think so.
I just don't.
(20:22):
I asked them and they said thatthey're supposed to keep the
records until he's aged out.
And he definitely wasn't agedout, he was 15.
I don't know, we kind of gotscrewed on that whole school
thing, but they did tell ustheir very first day that we
screwed him up and made himworse.
So, with these IEPs andeverything, they did start
making changes and we had somereally interesting things happen
(20:44):
while he was in school.
That girl was still there andthey still made him sit next to
her in the classroom.
I didn't, I don't even know, Idon't have the words of how
disrespectful that is to myson's needs and we just they
would not budge on this.
I mean, you know what do?
You have 20, 30 kids in aclassroom and you can't move
(21:06):
this girl or put my son next tosomebody else who's not
overbearing and a bully, I don'tknow.
I just I hated that school.
They totally disrespected ourfamily, our son.
I just don't understand whythey would put him through
traumatic situations every day,consciously.
It's like the grandparents whopump the kids full of sugar and
then send them back home to theparents, except it's much worse
him through traumatic situationsevery day, consciously.
It's like the grandparents whopump the kids full of sugar and
(21:27):
then send them back home to theparents.
Except it's much worse whenit's just you're disrespecting a
child who can't speak up forhimself.
It was really a terribleexperience, even though there
were some cool things that werehappening.
Overall, it was demeaning anddegrading to our son to have to
be in that situation and forthem to insist that he, because
(21:51):
of his age, get filtered intomainstream classrooms just so he
could have to leave themainstream classroom
periodically to go and get histherapies, to go and get his
therapies and of course, nowthere's a 40 minute adjustment
for that.
You know it was just a waste ofresources and there were so
(22:13):
many appalling things which aregoing to be coming up in future
episodes.
Now that we're on this subject,lots of bullshit going on at
that school, but the AutismWhisperer never actually
suggested that we do anythingdrastic.
But you know, the more I talkabout it I feel like we should
have and I suppose when you havethis situation like you do and
like we do, you're always goingto beat yourself up and should
(22:35):
have, would have, could have andall that stuff.
And the fact is we're doing thebest we can.
All of us are unchartedterritory here and it doesn't
matter what any other parentsays about their experience in
schools with severe autism.
You're going to go through yourown stuff.
You know it might help to getbackstories and ideas of how to
respond and stuff like that.
(22:56):
But we're all going to be facedwith separate challenges and
we're all going to get down onourselves about it because we
are tasked with being everythingto this child.
Everything, every singlefunction that has to take place
for this child to have acomfortable life and to have
rights and freedoms, therapies,supplies.
We have to do all of that.
(23:16):
We're not just mom and dad,we're therapists and doctors and
nurses.
We're everything.
So don't get down on yourselfwhen you run into people
mistreating your kid.
You're doing the best that youcan, you cannot possibly foresee
everything that the world isgoing to throw at your kid.
One thing you can do, which Iwish I could have done back then
, is have an intercom type thingon your child.
(23:38):
I mean, if you're trying tocatch some people up in some
bullshit, you know they'remistreating your child, that is
definitely the way to go.
But the biggest thing aboutthat angel sense thing for us is
just knowing where he's at ifhe runs and being able to
contact neighbors and people whomay be available in the local
area to go and block his path.
(24:00):
In my next episode I'm going toreveal some of the cool things
and some of the messed up thingsthat started happening at the
school for our son.
If you haven't heard my episodeabout the severe autism summer
blues and you are having a toughtime this summer, it might help
you to go listen to at leastthe first episode.
(24:20):
Well, they're all good.
One is about ways that you canfill in for the loss of the
routine once school lets out,and the next one, I believe, is
about taking care of yourself asthe caregiver during this time.
And then the third one is aboutsolutions for eloping and about
my story personallyexperiencing loping.
(24:41):
That might help you.
But 4th of July is a completelydifferent story, obviously, with
the threat of the fireworks andeverything.
But the Mother's Day and theFather's Day and the Memorial
Day have all passed and thoseare the holidays when a lot of
us get shunned and our kiddoesn't get to go to the pool or
get to go to the pool party orget to go to some get-together.
You know they say we can come,but you know, can you leave your
(25:03):
kid with someone else?
We don't want your child overhere.
All of that really emotionallydamaging stuff for us parents is
over, so that's a plus.
You know you only have a fewmore events to go and then it'll
be fall in no time.
It really is laborious in thesummer trying to keep these kids
(25:25):
happy and keep them fromrunning and sometimes, no matter
what you do, even if it's theirfavorite thing on earth, they
will not be happy and all youcan do is leave them alone and
hope to God they don't run.
And although ours is prettysedated right now with his
cannabis medicine, we have notforgotten we actually have an
appointment for our son.
I wanted to mention this becauseI didn't know it was a thing.
I feel like I should have knownit was a thing, but I didn't
(25:46):
know it was a thing.
I have been complaining to hisdoctor about the medicine.
He just doesn't seem to bephased by his medicine.
I mean, he's obviously waybetter than he was before he got
on it.
But she has changed hismedicine and he's still not cool
.
It's like it's not making adifference for him at all.
(26:07):
He almost seems more agitatedand he needs cannabis more often
, and I think that is just aload of crap.
I don't think that he shouldneed cannabis that often.
These drugs, they should work.
The cannabis is supposed tostay in your system for six to
eight hours and you know thereare days where he is just
behavior wise.
He's demanding that he get hiscannabis medicine every two
(26:30):
hours.
It sometimes it takes threehours for it to work and it's
just ridiculous.
You can tell that he'smedicated with cannabis, you can
tell, but then it instantlywears off or I don't know.
It just seems like he fights itsometimes and he just wants
more and more and more.
I don't know what's going on.
So anyway, I've beencomplaining to the doctor about
that and we're going in inAugust and she's going to do I
(26:51):
believe it's a saliva test tosee how he is metabolizing his
medicines.
I feel like they said it's agene test.
I don't, I don't remember,though I'll have to let you know
.
But I am very curious aboutthat because he does have a
pretty high metabolism and maybesome of it's, you know,
inherited from his dad, but someof it is because of all his
flapping and stimming andeverything, and he is starting
(27:14):
to get a little bit of a potbelly.
Now he's getting his 24 yearold pot belly.
We're going to find out, we'llsee what's happening and, you
know, maybe it's a food thing,maybe it's a metabolism thing,
I'm not sure.
But soon as we get answers inAugust about that, I will
definitely fill you in.
I think about all of you guys,even though I don't know you.
I talked to a couple of you andI just am always thinking of
(27:37):
our severe autism tribe membersin the world, because we're all
so isolated and I just feel likewe could do better.
I feel like these safer respitecommunities that I'm talking
about building are justabsolutely necessary for us,
just for our health alone, forthe kids and the parents the
(27:58):
health benefits alone of havinga community like that, with
designated areas for forest,bathing and outdoor wellness and
other wellness programs, andthe educational aspects of the
community with the Montessoriprinciples mixed with therapy,
and I really think our kidscould thrive if people cared
(28:20):
enough to tailor experiences tothem.
I don't really expect that myson would ever be able to
actually have a job, and I get alot of flack for that from
other people out in the worldwho don't have a kid like mine.
Oh, you shouldn't limit him andall that stuff.
Whatever I you know he can'teven wash his hands, come on.
(28:40):
But I do think that he enjoyslearning if it's tailored to his
unique learning style and itdoesn't have to be long blocks
of time, just little experiences.
That's what he needs.
He doesn't need to actually beeducated, he needs to experience
things that give him theeducation and you know that
(29:01):
blueprint that I laid out in myepisode about it.
I really don't think I'mmissing anything.
But I would love to hear fromyou as the parents.
Your kids are different, yourneeds are different.
What would make a perfectrespite community for you Other
than actually getting respitefrom parents you can trust,
because you guys are bonded andyou understand each other's kids
and all of that, and you get totrain the therapists and
(29:25):
educators who come into thecommunity.
Other than that great shit,what do you think would make
your life so much better?
I mean, we've already talkedabout the opportunity for the
parents to get back to work orto work within the community
that we create by providingtheir own services, because all
of our kids will be better caredfor and watched over and will
(29:48):
have access to health andwellness opportunities and
modalities and no loud vehicles.
I don't know if I told you thatpart, but there's a place where
you park your vehicle and thenyou take a golf cart to your
little community.
I mean, I pretty much.
I think we've thought ofeverything really, just because
of what would make our lives inour family the three of us what
(30:10):
would be perfect?
Trusted respite would make ahuge difference.
Trusted therapists andeducators who are trained about
my kid by me and my husbandwould be perfect.
Would be perfect Someone totake care of healthy food
options being made available forus easily, without having to
(30:30):
drive an hour in a circle to hitfour different stores and maybe
get what my son needs and theopportunity to work some land,
grow some food, hit the sauna,hit the gym, maybe learn yoga or
teach yoga if that's your thing.
You know just some hobbies.
And hey, with everything thatyou've lost so far, what would
make it worth it to promote anidea like that for you?
(30:53):
I would love to hear your ideas.
I would work it into myblueprint I'm still working on
the topography of it andeverything to get into the video
that goes along with the audiothat you heard.
But I am not kidding about this.
I've got my eye on a campground.
Get into the video that goesalong with the audio that you
heard.
But I am not kidding about this.
I've got my eye on a campground.
It's been available for a whileand they're family oriented
anyway, family owned andeverything I just need.
(31:13):
I don't want investors because Idon't want to have to promise
them something in return.
I would love philanthropists,donations, to help me reach my
goal to get this campground andto develop the community, the
respite community, within thatcampground.
Why a campground?
Because it's already there.
The land is already there for areason.
(31:34):
It's obviously going to be in abeautiful, fun, serene place in
nature and it's already turninga profit and the extra land is
for me to work with and offer adifferent type of community
living opportunity formarginalized families like ours
who are dealing with severeautism.
The recreation is already there.
(31:55):
We just have to expand upon itand then provide all of the
things that are missing out ofour lives.
Your life is pretty freakingdrab, right, and it's scary
because people mistreat your kid.
Look, I don't have to go on andon, you already know.
But if you're not familiar withthe Safer Lifestyles Blueprint
for Respite Communities that Ihave come up with, please go
(32:17):
listen to that episode.
It's possibly episode 57.
I'm sorry, I don't know whichone it is.
I really should know that, butI thought it was 58.
But you can't miss it.
If you go and get a list of myepisodes, it says Safer
Lifestyles.
Anyway, please go check thatout and please drop me a line if
you have any suggestions that Ican include in the blueprint
(32:39):
for this community idea.
I really, really, really wantto get the flagship one done and
opened and prove that this isthe way to go for us.
We deserve it, we need it, ourkids, you know.
This allows for long-termplanning.
There's a huge benefit to thisHang in there, you're a
superhero.
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