March 26, 2025 • 28 mins
Shannon Chamberlin shares a devastating family betrayal that threatened her son's financial future and pushed her to physical and emotional breaking points, while also celebrating rare moments of communication breakthrough from her severely autistic son.
• The purpose of the podcast is to warn parents about unexpected challenges in severe autism parenting
• Shannon discusses her 19-year struggle with Hashimoto's autoimmune condition while caregiving
• The family is taking legal precautions to protect their current living situation
• Shannon's perspective on residential care evolved from heartbreak to desperately seeking options
• Rare communication breakthroughs provide precious moments of connection with her son
• Caregivers need time for personal development and thinking as adults, not just emergency parents
If you have questions, comments, or stories to share, email contact.parentingsevereautism@gmail.com.
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Episode Transcript
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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.
I'm grateful that you're here.
I'm grateful that you'relistening.
I'm hoping that you are able tofind some sort of comfort in my
podcast episodes.
The main reason I do thispodcast is to try to warn
parents before things arise,because there have been some
(00:41):
really alarming things that havehappened to us and they just
happened.
There was no warning, there wasno buildup.
It was just that we woke up oneday and this is the way things
were, whether it's being beatenby my child or having him run
away, or having him destroy thehouse or a number of other
really devastating events that Ihaven't mentioned yet.
(01:02):
I just think that it would benice if someone out there has
not experienced it and hears myepisode and they're like oh okay
, that'll get banked into theback of my mind and that way
you're not as surprised or asblindsided as we were, and I
hope that this is helping.
I hope that I'm able to giveyou a sense of community and let
(01:22):
you know that you're not alone.
The downside of doing a podcastinstead of just being a person
in a group on a social mediaplatform like Facebook is that
you're not allowed to contributeto those groups if you are a
page or a quote unquote businessentity and although I'm not a
business entity, they won't letme post about my podcast and let
(01:45):
the 7,000 or more members inthe groups who are dealing with
parenting severe autism.
I can't even let them knowabout me, you know.
So if you know someone or youare friends with people in these
groups, I can pretty muchguarantee they don't know about
this podcast and if you thinkthat this podcast might help
(02:06):
them in any way, please feelfree to share my podcast
episodes, tell them how to findit and hopefully we can help
more people in our boat bysharing the information about
the episodes.
I don't think there are a lotof podcasts out there like mine
who focus on exactly what I'mfocused on, which is
(02:26):
forewarnings.
Now, if you have any questions,comments or stories to share,
whether you want them sharedpublicly or just between us, you
can always email me atcontactparentingsevereautism at
gmailcom, or you can leave me afan mail message which is kind
of like a text message andthat's, I think, on each episode
.
It should be an option and, asyou know, I don't really know
(02:50):
how all of this works.
All I do is tell my story andget it out there.
So if you have any input,please feel free to contact me.
I would love to hear from you.
In my last episode, I wasfocused on having to always be
on high alert and function atthat level every day, and it was
just kind of something I wasthrown into, just like you.
No one plans to have a childwith autism.
(03:12):
You know, it just happens, andit happens overnight, and one
day you're like well, my kid's alittle weird, I'm going to have
him tested, and then all of asudden you're in the throes of
it, right?
So I do have more,unfortunately, along the lines
of high alert.
I also have a cute little storyof spotty communication efforts
.
So every once in a while it'snot constant, but we do get a
(03:34):
little glimmer of hope or, youknow, not even hope, just a
random, short-lived blessingwhere our child is able to
express his needs with some sortof broken English language and
words, and it's always somethingto celebrate, in my opinion.
So I'll be sharing that withyou as well.
And in my last episode I talkedabout all the things that you
(03:57):
never think you'll have to lookout for.
As far as other people areconcerned, you know outside
influences on your life, yourchild's life, things like that.
Shortly after I published thatepisode, I got really smacked in
the face with some things.
So I kind of want to start outfocusing on physical and mental
health of you, the parent, thecaregiver, because that's where
(04:18):
I have been at.
You may have noticed that myepisodes didn't come out for a
couple of weeks and that'sbecause I really got knocked on
my ass by something thathappened.
So just a little background onme, nothing really to do with my
child, but as a stepmom of achild with severe autism, I have
my own things to deal with aswell.
(04:38):
For over 19 years I've beendealing with some physical
ailments.
In my opinion, I'm very healthy, but I was undiagnosed for a
long time, and then over thepast 10 years, I've been living
diagnosed as having Hashimoto's,which is an autoimmune
condition affecting the thyroid,and it actually affects
everything, every functionpretty much in my body.
(05:00):
And the main problem with thisand many other autoimmune
conditions is that the nervoussystem is under attack all the
time, or we feel as if we areunder attack all the time.
So while I was literally beingattacked all the time, I also
was living with this medicalcondition before any of this
(05:23):
severe autism even started andit's just been piling up and
piling up.
And I do treat it naturally andwith you know diet and
lifestyle.
I take one little pill, no bigdeal.
But it's so easy to put myselfon the back burner because of my
child's needs.
I mean, he can't do anythingfor himself, he can't defend
himself, he can't think forhimself, he can't function, and
(05:45):
I feel that it is myresponsibility as mommy to help
him through these issues.
However, these issues don'tever go away.
In his case, many of our kidsand you know we are overlooked
with medical goals and advancesand science and research and all
of that.
Nobody understands our kids andnobody cares to, and it's
(06:07):
really hard.
And I have a great idea onhelping further the research and
results with kids like ours andit's all in this blueprint that
I'm getting ready to record andrelease the promo for.
But my point is that we trulycannot be effective in taking
care of our children, who cannotcare for themselves, if we are
(06:27):
not able to care for ourselves.
Alongside that caregiving, it'sso easy to not sleep, not eat,
overeat, oversleep.
You know just all of the thingsthat have to do with your
nervous system, depression,everything that sets in with
this lifestyle.
So I urge you to try to findsome solace, try to find some
(06:52):
minutes each day where you canjust focus on you.
And yeah, it sounds ridiculous,it sounds hard, it sounds like
a few minutes isn't enoughbecause you've neglected
yourself for so long.
And right now I'm experiencingin my own health what we call a
flare in the Hashimoto's world.
It was set off by somethingthat I'm going to tell you the
(07:13):
details about, but it was.
It was so bad that I could notrelease a podcast for two weeks.
I was unable to function.
And now I'm dealing with a lotand I just, you know, on a
parent-to-parent it's not alwaysabout the kid, it's not always
about what they're going to doto surprise you and what lurks
around the corner.
It's, you know, you got to takecare of yourself, and the story
(07:35):
I'm getting ready to tell you.
I will keep it brief, but it'sa funny thing how it affected me
and my health, it didn't evenhurt my kid.
(08:19):
In addition to that, she and herhusband still owned two of
their five rental houses thatthey had had for a long time.
So, in addition to herassisting us with Jacob, she was
also gifting us both of thosehouses so that we could, as we
saw fit, fix them up, sell them,rent them, whatever, in order
(08:40):
to get money for either a downpayment in a new place or to
help Jacob in the long run inlike elder care services and
stuff like that.
So we were so relieved to learnthat we had this woman who
loved her grandson, justunconditionally.
Just loved him so much that shewas going to spend more time
(09:00):
with him, even though he wasscreaming and crying and being a
terrible, terrible grandson atthe time.
She wanted to help and we wereso relieved to have a loving
person willing to help us.
We thought, oh my gosh, thelight at the end of the tunnel.
Oh my gosh, we might be able tobreathe, we might be able to go
(09:21):
out without him once in a while.
Oh, wow, this is gettingexciting.
And the two houses my spouseknows quite a bit about real
estate.
I know quite a bit about fixingup houses.
So we were like, okay, this isawesome, the future is going to
be okay, even though everythingis hard right now.
This is awesome.
How wonderful of the family,how generous of the family to
(09:45):
give this to us for our son tohelp plan his future and make
sure that he is taken care ofthe best that we can.
How wonderful.
And so when that date of herretirement came up, she in fact
added another year on.
I guess she wasn't ready yet.
We were.
We really could have used thathelp, but she wasn't ready yet.
(10:07):
So she added another six to 12months on to her working life.
Also, something happenedfinancially for them where they
saw fit to unload one of thoserental houses that was promised
to us for our son.
Hey, that's fine, it wasn'tours to begin with.
It was a great thought.
It was really something thatkept us going.
(10:28):
It's like when you're working,working, working full-time, and
you have a vacation planned andyou know it's coming and you can
get through that whole 12months before that vacation a
lot easier than you could if youdidn't have a vacation planned
at all.
Right, so that's kind of how wewere feeling, like, oh, wow,
we're gonna get a grandmotherover here with her loving energy
and we're going to have thesehouses.
(10:49):
Okay, so now we only get onehouse.
That's not the family house,it's just a rental, so that's
fine.
I'm sorry that you guys raninto some kind of financial
situation where you had to dothat.
That's a bummer.
At least you had that, that'sgreat.
And now they're saying, okay,well, I promise I'm retiring on
this date and the other housewill not be sold, it is yours
(11:11):
and there are people living init.
They've been living in it for30 years.
Everything is great with it.
It's been kept up with repairs,everything's fine.
It's a great house for you guysto use as your nest egg and
then, of course, eventually downthe line, the house that we're
currently in is also aninheritance.
All of these years.
My son is 24 and he was about 16when we learned that we were
(11:35):
down to one rental house and thegrandmother was going to work
another year.
Obviously, she's not here now.
She didn't want to play by therules.
She didn't want to obey thelaws of what to feed him and
what not to feed him, where totake him and where not to take
him and all of the things thatkeep our son safe and healthy.
She didn't want to play by that.
(11:55):
So she got mad at us and sheleft and has not tried to
interact with our son very muchat all, as I've mentioned in
past episodes.
Fine, no one wants to interactwith our son.
Why should she be any different?
That's fine.
At least we still have the onerental house and this house, and
although we're suffering by theyou know the way things work in
(12:17):
this house with us living here,at least we don't have the
bills, the mortgage and stufflike that.
We are just biding our timeplanning, watching the market.
We talked about this rentalhouse last year because I have a
really great idea which I'mputting into this blueprint
presentation that'll be comingout very soon and I'm hoping to
flood social media outlets withit, and the idea does have to do
(12:39):
with buying property.
Okay, two years ago, when Idrew all of this out on paper
and presented it to my father inlaw, we all sat down and came
up with some ideas, and thenlast year we re-upped on these
ideas, we refreshed our memories, got some more ideas going and
the rental house and this housethat we live in were all part of
(13:01):
the financial plan as a meansto move into the next stage of
planning for Jacob's life andlast year where we left it was
that well, winter's coming,we're not going to do anything
right now, but next spring andsummer we're probably going to
sell that house and pair it withthe mortgage that is on this
house.
We had it all planned out and Iwoke up one day about three
(13:25):
weeks ago and I found out thatthe roof was leaking again this
roof in this house.
So that was also part of theplan roof and siding for this
house, because insurance wasn'tgoing to cover it because of
hail damage to the other house.
So that other house that wewere getting ready to sell has a
brand new roof.
It's got all these upgradesbecause of hail damage that the
(13:46):
insurance company covered butwouldn't cover it for the main
house that everybody lives in.
So it was kind of a mess.
You know how insurance is.
The damage got worse over thewinter, over last summer and
then the winter, and now we'rein spring.
It's pretty much a waterfall inone area of the kitchen when
the wind blows a certain way andit's raining.
So my spouse found thewaterfall like three rains in a
(14:11):
row and about three weeks ago wehad a really big one, and he
approached his dad and said okay, man, we need to talk about the
house that we're going to selland we need to talk about this
roof.
We got to get some plans going.
I was not involved in any ofthat, but what I got was the
result of the conversation, andthe result was that we learned
(14:32):
that he sold that house withouttelling us.
He said that someone approachedhim, someone called him and
said hey, we know that you havea rental house and we want to
buy it.
He did not consult us, hedidn't mention it to us at all.
The worst part is that - thisis really hard for me to say -
(14:54):
he sold that house for justunder one third of its market
value.
For the price that he sold itto, he gifted it to some
strangers.
For the amount of money that hesold it for, he could have
offered it to us.
(15:15):
We could have had our familyback in a house together, the
three of us.
Everything could have startedgetting evened out for our son,
even though that's not where wewant to live, and blah, blah,
blah.
For the price it would havebeen well worth it.
Well worth it.
He didn't even give us theopportunity to buy the house or
(15:36):
move into the house, or for theloss that he took on that house,
he could have helped us.
He didn't even think about us.
I have been living in fear eversince.
We are taking legal precautionsnow and getting things put in
place so that he can't lose thishouse and leave us with nothing
(15:56):
.
But too little, too late.
We lost a whole fucking house,man, a whole house, three
bedroom, two-story house.
He just gave it away.
I'm still speechless, but Icried for three days straight
and my eyes were so swollen shutby the second day that I could
not edit my podcast episode,which is the one that came out
(16:19):
last week.
I had to sit.
It took me two weeks to be ableto even focus on this anymore,
and there's no way to prepareyou or anyone else for that.
You know, I mean I thought Ihad had the last of my lessons
of you know you can't count onfamily and all of that.
I didn't.
I never saw this coming and it'sbeen really hard to try to cope
(16:44):
with it, because not only doesit affect my nervous system and
my autoimmune condition and myhealth and my husband's health
and his mental state andultimately, our entire family
unit.
Not only does it affect allthat, but you know it's really
scary for us.
You know we lost everythingyears ago, largely due to our
(17:07):
son's decline, with his severeautism getting more severe
without warning.
We didn't, you know, I mean noone prepared us.
No one knows anything aboutthis autism that he has, and
there was no way for a medicalprofessional to tell us anything
really.
But it was absolutelydevastating to lose everything,
and every day that we wake up isanother day that we face the
(17:32):
fears of what is going to happento our son in the long run.
We're giving everything we'vegot to take care of him, but
what about when we're not here?
We lost everything and it'salmost impossible to imagine
being able to financiallyprovide for him the services and
care that he deserves when he'solder.
(17:53):
He can't even get any of it nowbeing on financial aid.
I mean, who's going to advocatefor him?
Anyway, it just threw me into afight or flight kind of
situation where I feel like Ihave to look for a place to live
.
I mean, that's how I feel and Idon't have to, but that's what
it's done to me.
We don't feel secure, we don'tfeel safe.
(18:16):
We just had our son'sinheritance sold right out from
under him with no regard for himat all and, no, we didn't even
get any information about ituntil we had to ask about it.
You know, I don't even know howlong ago he sold the house and
the fact that he didn't considerus at all.
.
.
as Jacob's mommy, all I've everdone is fight for his rights
(18:42):
and fight for people to considerhim as a person, and you know,
it just really hurts.
I feel like the battle was stillgoing on and I went out for ice
cream.
You know what I mean?
Like I never, I don't know, Ijust we're just devastated.
There's no, there's no otherway to say that.
This is hard, because we wentfrom having close to $100,000 in
(19:07):
that house to having nothing.
We have nothing from that housenow and nothing is not going to
get Jacob nearly as far.
But I'm not, you know, we'renot going to give up.
But anyway, I have to admitI've been in quite a depression
since that happened.
I'm trying to get out of it.
I'm trying to keep podcasting,but that's what happened.
(19:30):
So I finally stopped waking upand crying and now I wake up and
focus on we are healthy and weare safe.
Although my spouse and I don'tfeel safe, we are all healthy
and at this moment in time weare safe.
Those are the blessings that Icount every day.
(19:50):
I really feel that this brand ofautism that my son has is
largely becoming straight upmental illness, but every once
in a while we get littleglimmers of hope.
It's almost like sometimes theautism takes a nap.
You know like we can look atour son and he seems just so
neurotypical, just briefly.
You know when he's sitting insilence and just sitting in the
(20:14):
car or something.
Every once in a while you cancatch a glimpse of him and what
it would maybe be like if hedidn't have severe autism.
Sometimes the autism shellfalls apart briefly to let us
see that and it's equallyheartbreaking.
You know, when we lived inWisconsin in our beautiful home,
my spouse came home from asales appointment one night and
(20:35):
said I just cooked for a couplewhose daughter has a couple
different conditions.
She has autism and a coupleother things, and she was severe
.
And he said I didn't meet herbecause she lives in a home, she
lives in a group home and I wasamazed.
I hadn't ever, I didn't knowyet that that was a thing.
(20:57):
And I mean, we were isolated,you know, and I just didn't know
yet because we hadn't gottenservices from the state.
I didn't have any education onwhat would be available from the
state.
I didn't have any education onwhat would be available.
So we learned this and you know,our son was starting to get
pretty bad at the time.
I mean, it wasn't as bad aswhat I've already told you, you
know, with the torture andeverything, but he was getting
(21:19):
there.
He was quickly getting to thatpoint and I remember breaking
down in tears when I tried torespond to my spouse, just from
him telling me the story of them, I was floored.
I said oh my gosh really.
And one I didn't know it was athing.
So I didn't know it wasavailable.
So when you don't know what'savailable, you don't consider
(21:40):
these things.
And so it was a shock to mysystem as a parent and caregiver
that that was even possible fora parent or for an institution.
You know, I just I didn'trealize that existed.
So when he mentioned that to me, my jaw dropped and I got
really sad and quiet.
And then I tried to conversewith him about it and I just
(22:01):
started crying and what I wastrying to say at the time was I
just can't imagine giving Jacobaway to somebody.
I mean, he's bad, but he's notthat bad.
It was heartbreaking to me toeven imagine putting him
somewhere, and I didn't have themindset yet that someone else
could do better for him than wecould.
(22:22):
I didn't feel that way yet I donow and I have for a long time,
but at the time I did not feelthat way and I just couldn't.
I couldn't connect with thatwhole idea.
Fast forward two years and Iwas begging to find someone
anyone anywhere that could showme that they could provide him
with a decent life and healthand wellness to take him please.
(22:46):
It was really only about, Idon't know, eight to 12 months
from the time I learned aboutthat little girl until the time
I realized that I think myspouse and I are hindering our
son's progress.
I think that we're getting inthe way.
I think he would be better offaway from us.
It didn't take long, you know.
It was eight to 12 months andthat went by like a blink of an
(23:09):
eye.
I guess my point is that,whatever you think right now
about your situation, beprepared for it to change.
It changes so, so fast and I'vegot some stories coming up that
are just really really messedup and fast, fast changes.
You know I'm going to sharethese with you because they're
really important milestones.
Changes you know I'm going toshare these with you because
they're really importantmilestones in his life and I
(23:31):
want people to know that thesethings happen.
I may not get to it in thisepisode, but the next one I'm
hoping.
But yeah, I went from crying andsobbing and being depressed and
not being able to imaginesending our son to live
somewhere else to wishing Icould and having no one to send
(23:52):
him to.
Similarly, since I've been backhere working in medical
cannabis and all that, I'veworked with a lot of women as
patients who are married but donot live with their spouses, and
five years I did this job and Ithought, man, geez, I just
couldn't imagine that.
You know, I got my soulmatehere.
I couldn't imagine how sad, howlonely, how just unfortunate to
(24:17):
marry someone and then becomestrangers because you never see
each other.
I just thought how weird, how Icould never do that.
I can't imagine having to be inthat position.
But you fast forward to rightnow.
And it's not that I want to getaway from my spouse, but,
especially after the devastatingnews of the house being sold,
(24:39):
I'm now hyper aware of my lackof space as a woman, my lack of
privacy, you know, the lack ofpersonal time and the lack of
privacy, the fact that I canhear everything inside and
outside of this house.
In my office I can heareverything and that means
everything can hear me.
(25:00):
You know, I'm the only woman ina house of men and I'm just
hyper aware of it now.
So now I see benefit in thosewomen.
You know going through that,yes, my child was relentless
once we got him home, all thetime and all that.
But you know, I still managedto find time and now I find
(25:21):
myself doing nothing, even if Ihave a little window of time,
because I'm paralyzed by fearthat whatever I do is going to
be interrupted and it's justsuper unproductive and it's
really stupid because I don'thave anything to hide.
Whatever I do is fine, I don'tcare, but it's just a weird
(25:42):
thing.
I guess my point is that youhave to keep going.
You can't just stop and beparalyzed by fear that you're
going to be interrupted.
You have to start, you have tokeep going, and I'm really just
telling that to myself andhopefully it helps you too, you
know, because if for me, youknow, if I can't be alone for
certain chunks of time, I can'tthink, and then I can't plan and
(26:04):
I can't function if I can'tthink and plan, it's just really
, really hard, and I'madvocating for all of us, not
just our children.
We, as caregivers, need help.
We need time for personaldevelopment.
We need time to just think asadults, not as emergency mommies
and daddies.
I'm having a really hard time,and if you are too, I want you
(26:26):
to know that you're not alone.
Speaking of time, imagine thatI am out of it again.
So I just want to quickly closewith this cute little story.
I think it's cute.
Another little communicationbreakthrough, as I mentioned,
happened recently.
It was probably four weeks agonow.
It was actually right after theepisode I released before the
(26:47):
devastating news.
So I was out at the gym andonce I got in the door, Jacob
did the normal greeting.
We've always said Jacob's home,Yay.
So he said yay, Shannon's home.
And he actually kept it going.
He said how are you doing?
The best that he could.
And I said I'm okay, it's cold.
And he said yeah.
(27:07):
And I asked him what are youyou doing?
Normally when I say what areyou doing, he'll say good and
that's it.
No matter what, no matter whatyou ask him, he'll say good.
So I said what are you doing?
And he said not much, justhaving some fun.
I said, wow, good talking buddy.
And I gave him a supportivelittle squeeze and he said
exactly! Yeah, I'm so proud ofhim.
(27:29):
And then just today, he saidthat he needed help.
He needed my help and hecouldn't find a shirt because
his shirts were in the wrongslot in the closet, cause I have
a soft foldable hanging cubbybecause I had to eliminate all
things in the closet because ofdestruction.
So they were just one slot downand he's like, the best way
that he could, he was telling methat he didn't have a shirt,
but it was just because theywere in the wrong spot.
(27:51):
So I showed him where they were.
I mean, obviously, it was rightthere, you know, but they
weren't where he expects them tobe, so apparently they don't
count.
Anyway, I showed it to him andhe goes oh, thank you.
And I thanked him for talkingto me and telling me what he
needed and all of that.
I try to be really good aboutreinforcing that.
Yes, this is good.
Communication is good, tryingto use your words is good,
(28:13):
asking for help is good.
I don't think it makes a damnbit of difference.
I think that he decides when hewants to do good and when he
doesn't, and communication isnot one thing that he can decide
upon.
Anyway, it seems, in my nextepisode I'm going to get into
some of the really strangebehaviors that started coming
(28:33):
out, even more strange than theother ones I've told you.
And then I would say, probablythe most damaging, devastating
realization about hisdevelopment, or lack of, I'm
going to get into that in thenext episode.
You hang in there, you're asuperhero.
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
I'm grateful that you're here.
I'm grateful that you'relistening.
I'm hoping that you are able tofind some sort of comfort in my
podcast episodes.
The main reason I do thispodcast is to try to warn
parents before things arise,because there have been some
(00:41):
really alarming things that havehappened to us and they just
happened.
There was no warning, there wasno buildup.
It was just that we woke up oneday and this is the way things
were, whether it's being beatenby my child or having him run
away, or having him destroy thehouse or a number of other
really devastating events that Ihaven't mentioned yet.
(01:02):
I just think that it would benice if someone out there has
not experienced it and hears myepisode and they're like oh okay
, that'll get banked into theback of my mind and that way
you're not as surprised or asblindsided as we were, and I
hope that this is helping.
I hope that I'm able to giveyou a sense of community and let
(01:22):
you know that you're not alone.
The downside of doing a podcastinstead of just being a person
in a group on a social mediaplatform like Facebook is that
you're not allowed to contributeto those groups if you are a
page or a quote unquote businessentity and although I'm not a
business entity, they won't letme post about my podcast and let
(01:45):
the 7,000 or more members inthe groups who are dealing with
parenting severe autism.
I can't even let them knowabout me, you know.
So if you know someone or youare friends with people in these
groups, I can pretty muchguarantee they don't know about
this podcast and if you thinkthat this podcast might help
(02:06):
them in any way, please feelfree to share my podcast
episodes, tell them how to findit and hopefully we can help
more people in our boat bysharing the information about
the episodes.
I don't think there are a lotof podcasts out there like mine
who focus on exactly what I'mfocused on, which is
(02:26):
forewarnings.
Now, if you have any questions,comments or stories to share,
whether you want them sharedpublicly or just between us, you
can always email me atcontactparentingsevereautism at
gmailcom, or you can leave me afan mail message which is kind
of like a text message andthat's, I think, on each episode
.
It should be an option and, asyou know, I don't really know
(02:50):
how all of this works.
All I do is tell my story andget it out there.
So if you have any input,please feel free to contact me.
I would love to hear from you.
In my last episode, I wasfocused on having to always be
on high alert and function atthat level every day, and it was
just kind of something I wasthrown into, just like you.
No one plans to have a childwith autism.
(03:12):
You know, it just happens, andit happens overnight, and one
day you're like well, my kid's alittle weird, I'm going to have
him tested, and then all of asudden you're in the throes of
it, right?
So I do have more,unfortunately, along the lines
of high alert.
I also have a cute little storyof spotty communication efforts
.
So every once in a while it'snot constant, but we do get a
(03:34):
little glimmer of hope or, youknow, not even hope, just a
random, short-lived blessingwhere our child is able to
express his needs with some sortof broken English language and
words, and it's always somethingto celebrate, in my opinion.
So I'll be sharing that withyou as well.
And in my last episode I talkedabout all the things that you
(03:57):
never think you'll have to lookout for.
As far as other people areconcerned, you know outside
influences on your life, yourchild's life, things like that.
Shortly after I published thatepisode, I got really smacked in
the face with some things.
So I kind of want to start outfocusing on physical and mental
health of you, the parent, thecaregiver, because that's where
(04:18):
I have been at.
You may have noticed that myepisodes didn't come out for a
couple of weeks and that'sbecause I really got knocked on
my ass by something thathappened.
So just a little background onme, nothing really to do with my
child, but as a stepmom of achild with severe autism, I have
my own things to deal with aswell.
(04:38):
For over 19 years I've beendealing with some physical
ailments.
In my opinion, I'm very healthy, but I was undiagnosed for a
long time, and then over thepast 10 years, I've been living
diagnosed as having Hashimoto's,which is an autoimmune
condition affecting the thyroid,and it actually affects
everything, every functionpretty much in my body.
(05:00):
And the main problem with thisand many other autoimmune
conditions is that the nervoussystem is under attack all the
time, or we feel as if we areunder attack all the time.
So while I was literally beingattacked all the time, I also
was living with this medicalcondition before any of this
(05:23):
severe autism even started andit's just been piling up and
piling up.
And I do treat it naturally andwith you know diet and
lifestyle.
I take one little pill, no bigdeal.
But it's so easy to put myselfon the back burner because of my
child's needs.
I mean, he can't do anythingfor himself, he can't defend
himself, he can't think forhimself, he can't function, and
(05:45):
I feel that it is myresponsibility as mommy to help
him through these issues.
However, these issues don'tever go away.
In his case, many of our kidsand you know we are overlooked
with medical goals and advancesand science and research and all
of that.
Nobody understands our kids andnobody cares to, and it's
(06:07):
really hard.
And I have a great idea onhelping further the research and
results with kids like ours andit's all in this blueprint that
I'm getting ready to record andrelease the promo for.
But my point is that we trulycannot be effective in taking
care of our children, who cannotcare for themselves, if we are
(06:27):
not able to care for ourselves.
Alongside that caregiving, it'sso easy to not sleep, not eat,
overeat, oversleep.
You know just all of the thingsthat have to do with your
nervous system, depression,everything that sets in with
this lifestyle.
So I urge you to try to findsome solace, try to find some
(06:52):
minutes each day where you canjust focus on you.
And yeah, it sounds ridiculous,it sounds hard, it sounds like
a few minutes isn't enoughbecause you've neglected
yourself for so long.
And right now I'm experiencingin my own health what we call a
flare in the Hashimoto's world.
It was set off by somethingthat I'm going to tell you the
(07:13):
details about, but it was.
It was so bad that I could notrelease a podcast for two weeks.
I was unable to function.
And now I'm dealing with a lotand I just, you know, on a
parent-to-parent it's not alwaysabout the kid, it's not always
about what they're going to doto surprise you and what lurks
around the corner.
It's, you know, you got to takecare of yourself, and the story
(07:35):
I'm getting ready to tell you.
I will keep it brief, but it'sa funny thing how it affected me
and my health, it didn't evenhurt my kid.
(08:19):
In addition to that, she and herhusband still owned two of
their five rental houses thatthey had had for a long time.
So, in addition to herassisting us with Jacob, she was
also gifting us both of thosehouses so that we could, as we
saw fit, fix them up, sell them,rent them, whatever, in order
(08:40):
to get money for either a downpayment in a new place or to
help Jacob in the long run inlike elder care services and
stuff like that.
So we were so relieved to learnthat we had this woman who
loved her grandson, justunconditionally.
Just loved him so much that shewas going to spend more time
(09:00):
with him, even though he wasscreaming and crying and being a
terrible, terrible grandson atthe time.
She wanted to help and we wereso relieved to have a loving
person willing to help us.
We thought, oh my gosh, thelight at the end of the tunnel.
Oh my gosh, we might be able tobreathe, we might be able to go
(09:21):
out without him once in a while.
Oh, wow, this is gettingexciting.
And the two houses my spouseknows quite a bit about real
estate.
I know quite a bit about fixingup houses.
So we were like, okay, this isawesome, the future is going to
be okay, even though everythingis hard right now.
This is awesome.
How wonderful of the family,how generous of the family to
(09:45):
give this to us for our son tohelp plan his future and make
sure that he is taken care ofthe best that we can.
How wonderful.
And so when that date of herretirement came up, she in fact
added another year on.
I guess she wasn't ready yet.
We were.
We really could have used thathelp, but she wasn't ready yet.
(10:07):
So she added another six to 12months on to her working life.
Also, something happenedfinancially for them where they
saw fit to unload one of thoserental houses that was promised
to us for our son.
Hey, that's fine, it wasn'tours to begin with.
It was a great thought.
It was really something thatkept us going.
(10:28):
It's like when you're working,working, working full-time, and
you have a vacation planned andyou know it's coming and you can
get through that whole 12months before that vacation a
lot easier than you could if youdidn't have a vacation planned
at all.
Right, so that's kind of how wewere feeling, like, oh, wow,
we're gonna get a grandmotherover here with her loving energy
and we're going to have thesehouses.
(10:49):
Okay, so now we only get onehouse.
That's not the family house,it's just a rental, so that's
fine.
I'm sorry that you guys raninto some kind of financial
situation where you had to dothat.
That's a bummer.
At least you had that, that'sgreat.
And now they're saying, okay,well, I promise I'm retiring on
this date and the other housewill not be sold, it is yours
(11:11):
and there are people living init.
They've been living in it for30 years.
Everything is great with it.
It's been kept up with repairs,everything's fine.
It's a great house for you guysto use as your nest egg and
then, of course, eventually downthe line, the house that we're
currently in is also aninheritance.
All of these years.
My son is 24 and he was about 16when we learned that we were
(11:35):
down to one rental house and thegrandmother was going to work
another year.
Obviously, she's not here now.
She didn't want to play by therules.
She didn't want to obey thelaws of what to feed him and
what not to feed him, where totake him and where not to take
him and all of the things thatkeep our son safe and healthy.
She didn't want to play by that.
(11:55):
So she got mad at us and sheleft and has not tried to
interact with our son very muchat all, as I've mentioned in
past episodes.
Fine, no one wants to interactwith our son.
Why should she be any different?
That's fine.
At least we still have the onerental house and this house, and
although we're suffering by theyou know the way things work in
(12:17):
this house with us living here,at least we don't have the
bills, the mortgage and stufflike that.
We are just biding our timeplanning, watching the market.
We talked about this rentalhouse last year because I have a
really great idea which I'mputting into this blueprint
presentation that'll be comingout very soon and I'm hoping to
flood social media outlets withit, and the idea does have to do
(12:39):
with buying property.
Okay, two years ago, when Idrew all of this out on paper
and presented it to my father inlaw, we all sat down and came
up with some ideas, and thenlast year we re-upped on these
ideas, we refreshed our memories, got some more ideas going and
the rental house and this housethat we live in were all part of
(13:01):
the financial plan as a meansto move into the next stage of
planning for Jacob's life andlast year where we left it was
that well, winter's coming,we're not going to do anything
right now, but next spring andsummer we're probably going to
sell that house and pair it withthe mortgage that is on this
house.
We had it all planned out and Iwoke up one day about three
(13:25):
weeks ago and I found out thatthe roof was leaking again this
roof in this house.
So that was also part of theplan roof and siding for this
house, because insurance wasn'tgoing to cover it because of
hail damage to the other house.
So that other house that wewere getting ready to sell has a
brand new roof.
It's got all these upgradesbecause of hail damage that the
(13:46):
insurance company covered butwouldn't cover it for the main
house that everybody lives in.
So it was kind of a mess.
You know how insurance is.
The damage got worse over thewinter, over last summer and
then the winter, and now we'rein spring.
It's pretty much a waterfall inone area of the kitchen when
the wind blows a certain way andit's raining.
So my spouse found thewaterfall like three rains in a
(14:11):
row and about three weeks ago wehad a really big one, and he
approached his dad and said okay, man, we need to talk about the
house that we're going to selland we need to talk about this
roof.
We got to get some plans going.
I was not involved in any ofthat, but what I got was the
result of the conversation, andthe result was that we learned
(14:32):
that he sold that house withouttelling us.
He said that someone approachedhim, someone called him and
said hey, we know that you havea rental house and we want to
buy it.
He did not consult us, hedidn't mention it to us at all.
The worst part is that - thisis really hard for me to say -
(14:54):
he sold that house for justunder one third of its market
value.
For the price that he sold itto, he gifted it to some
strangers.
For the amount of money that hesold it for, he could have
offered it to us.
(15:15):
We could have had our familyback in a house together, the
three of us.
Everything could have startedgetting evened out for our son,
even though that's not where wewant to live, and blah, blah,
blah.
For the price it would havebeen well worth it.
Well worth it.
He didn't even give us theopportunity to buy the house or
(15:36):
move into the house, or for theloss that he took on that house,
he could have helped us.
He didn't even think about us.
I have been living in fear eversince.
We are taking legal precautionsnow and getting things put in
place so that he can't lose thishouse and leave us with nothing
(15:56):
.
But too little, too late.
We lost a whole fucking house,man, a whole house, three
bedroom, two-story house.
He just gave it away.
I'm still speechless, but Icried for three days straight
and my eyes were so swollen shutby the second day that I could
not edit my podcast episode,which is the one that came out
(16:19):
last week.
I had to sit.
It took me two weeks to be ableto even focus on this anymore,
and there's no way to prepareyou or anyone else for that.
You know, I mean I thought Ihad had the last of my lessons
of you know you can't count onfamily and all of that.
I didn't.
I never saw this coming and it'sbeen really hard to try to cope
(16:44):
with it, because not only doesit affect my nervous system and
my autoimmune condition and myhealth and my husband's health
and his mental state andultimately, our entire family
unit.
Not only does it affect allthat, but you know it's really
scary for us.
You know we lost everythingyears ago, largely due to our
(17:07):
son's decline, with his severeautism getting more severe
without warning.
We didn't, you know, I mean noone prepared us.
No one knows anything aboutthis autism that he has, and
there was no way for a medicalprofessional to tell us anything
really.
But it was absolutelydevastating to lose everything,
and every day that we wake up isanother day that we face the
(17:32):
fears of what is going to happento our son in the long run.
We're giving everything we'vegot to take care of him, but
what about when we're not here?
We lost everything and it'salmost impossible to imagine
being able to financiallyprovide for him the services and
care that he deserves when he'solder.
(17:53):
He can't even get any of it nowbeing on financial aid.
I mean, who's going to advocatefor him?
Anyway, it just threw me into afight or flight kind of
situation where I feel like Ihave to look for a place to live
.
I mean, that's how I feel and Idon't have to, but that's what
it's done to me.
We don't feel secure, we don'tfeel safe.
(18:16):
We just had our son'sinheritance sold right out from
under him with no regard for himat all and, no, we didn't even
get any information about ituntil we had to ask about it.
You know, I don't even know howlong ago he sold the house and
the fact that he didn't considerus at all.
.
.
as Jacob's mommy, all I've everdone is fight for his rights
(18:42):
and fight for people to considerhim as a person, and you know,
it just really hurts.
I feel like the battle was stillgoing on and I went out for ice
cream.
You know what I mean?
Like I never, I don't know, Ijust we're just devastated.
There's no, there's no otherway to say that.
This is hard, because we wentfrom having close to $100,000 in
(19:07):
that house to having nothing.
We have nothing from that housenow and nothing is not going to
get Jacob nearly as far.
But I'm not, you know, we'renot going to give up.
But anyway, I have to admitI've been in quite a depression
since that happened.
I'm trying to get out of it.
I'm trying to keep podcasting,but that's what happened.
(19:30):
So I finally stopped waking upand crying and now I wake up and
focus on we are healthy and weare safe.
Although my spouse and I don'tfeel safe, we are all healthy
and at this moment in time weare safe.
Those are the blessings that Icount every day.
(19:50):
I really feel that this brand ofautism that my son has is
largely becoming straight upmental illness, but every once
in a while we get littleglimmers of hope.
It's almost like sometimes theautism takes a nap.
You know like we can look atour son and he seems just so
neurotypical, just briefly.
You know when he's sitting insilence and just sitting in the
(20:14):
car or something.
Every once in a while you cancatch a glimpse of him and what
it would maybe be like if hedidn't have severe autism.
Sometimes the autism shellfalls apart briefly to let us
see that and it's equallyheartbreaking.
You know, when we lived inWisconsin in our beautiful home,
my spouse came home from asales appointment one night and
(20:35):
said I just cooked for a couplewhose daughter has a couple
different conditions.
She has autism and a coupleother things, and she was severe
.
And he said I didn't meet herbecause she lives in a home, she
lives in a group home and I wasamazed.
I hadn't ever, I didn't knowyet that that was a thing.
(20:57):
And I mean, we were isolated,you know, and I just didn't know
yet because we hadn't gottenservices from the state.
I didn't have any education onwhat would be available from the
state.
I didn't have any education onwhat would be available.
So we learned this and you know,our son was starting to get
pretty bad at the time.
I mean, it wasn't as bad aswhat I've already told you, you
know, with the torture andeverything, but he was getting
(21:19):
there.
He was quickly getting to thatpoint and I remember breaking
down in tears when I tried torespond to my spouse, just from
him telling me the story of them, I was floored.
I said oh my gosh really.
And one I didn't know it was athing.
So I didn't know it wasavailable.
So when you don't know what'savailable, you don't consider
(21:40):
these things.
And so it was a shock to mysystem as a parent and caregiver
that that was even possible fora parent or for an institution.
You know, I just I didn'trealize that existed.
So when he mentioned that to me, my jaw dropped and I got
really sad and quiet.
And then I tried to conversewith him about it and I just
(22:01):
started crying and what I wastrying to say at the time was I
just can't imagine giving Jacobaway to somebody.
I mean, he's bad, but he's notthat bad.
It was heartbreaking to me toeven imagine putting him
somewhere, and I didn't have themindset yet that someone else
could do better for him than wecould.
(22:22):
I didn't feel that way yet I donow and I have for a long time,
but at the time I did not feelthat way and I just couldn't.
I couldn't connect with thatwhole idea.
Fast forward two years and Iwas begging to find someone
anyone anywhere that could showme that they could provide him
with a decent life and healthand wellness to take him please.
(22:46):
It was really only about, Idon't know, eight to 12 months
from the time I learned aboutthat little girl until the time
I realized that I think myspouse and I are hindering our
son's progress.
I think that we're getting inthe way.
I think he would be better offaway from us.
It didn't take long, you know.
It was eight to 12 months andthat went by like a blink of an
(23:09):
eye.
I guess my point is that,whatever you think right now
about your situation, beprepared for it to change.
It changes so, so fast and I'vegot some stories coming up that
are just really really messedup and fast, fast changes.
You know I'm going to sharethese with you because they're
really important milestones.
Changes you know I'm going toshare these with you because
they're really importantmilestones in his life and I
(23:31):
want people to know that thesethings happen.
I may not get to it in thisepisode, but the next one I'm
hoping.
But yeah, I went from crying andsobbing and being depressed and
not being able to imaginesending our son to live
somewhere else to wishing Icould and having no one to send
(23:52):
him to.
Similarly, since I've been backhere working in medical
cannabis and all that, I'veworked with a lot of women as
patients who are married but donot live with their spouses, and
five years I did this job and Ithought, man, geez, I just
couldn't imagine that.
You know, I got my soulmatehere.
I couldn't imagine how sad, howlonely, how just unfortunate to
(24:17):
marry someone and then becomestrangers because you never see
each other.
I just thought how weird, how Icould never do that.
I can't imagine having to be inthat position.
But you fast forward to rightnow.
And it's not that I want to getaway from my spouse, but,
especially after the devastatingnews of the house being sold,
(24:39):
I'm now hyper aware of my lackof space as a woman, my lack of
privacy, you know, the lack ofpersonal time and the lack of
privacy, the fact that I canhear everything inside and
outside of this house.
In my office I can heareverything and that means
everything can hear me.
(25:00):
You know, I'm the only woman ina house of men and I'm just
hyper aware of it now.
So now I see benefit in thosewomen.
You know going through that,yes, my child was relentless
once we got him home, all thetime and all that.
But you know, I still managedto find time and now I find
(25:21):
myself doing nothing, even if Ihave a little window of time,
because I'm paralyzed by fearthat whatever I do is going to
be interrupted and it's justsuper unproductive and it's
really stupid because I don'thave anything to hide.
Whatever I do is fine, I don'tcare, but it's just a weird
(25:42):
thing.
I guess my point is that youhave to keep going.
You can't just stop and beparalyzed by fear that you're
going to be interrupted.
You have to start, you have tokeep going, and I'm really just
telling that to myself andhopefully it helps you too, you
know, because if for me, youknow, if I can't be alone for
certain chunks of time, I can'tthink, and then I can't plan and
(26:04):
I can't function if I can'tthink and plan, it's just really
, really hard, and I'madvocating for all of us, not
just our children.
We, as caregivers, need help.
We need time for personaldevelopment.
We need time to just think asadults, not as emergency mommies
and daddies.
I'm having a really hard time,and if you are too, I want you
(26:26):
to know that you're not alone.
Speaking of time, imagine thatI am out of it again.
So I just want to quickly closewith this cute little story.
I think it's cute.
Another little communicationbreakthrough, as I mentioned,
happened recently.
It was probably four weeks agonow.
It was actually right after theepisode I released before the
(26:47):
devastating news.
So I was out at the gym andonce I got in the door, Jacob
did the normal greeting.
We've always said Jacob's home,Yay.
So he said yay, Shannon's home.
And he actually kept it going.
He said how are you doing?
The best that he could.
And I said I'm okay, it's cold.
And he said yeah.
(27:07):
And I asked him what are youyou doing?
Normally when I say what areyou doing, he'll say good and
that's it.
No matter what, no matter whatyou ask him, he'll say good.
So I said what are you doing?
And he said not much, justhaving some fun.
I said, wow, good talking buddy.
And I gave him a supportivelittle squeeze and he said
exactly! Yeah, I'm so proud ofhim.
(27:29):
And then just today, he saidthat he needed help.
He needed my help and hecouldn't find a shirt because
his shirts were in the wrongslot in the closet, cause I have
a soft foldable hanging cubbybecause I had to eliminate all
things in the closet because ofdestruction.
So they were just one slot downand he's like, the best way
that he could, he was telling methat he didn't have a shirt,
but it was just because theywere in the wrong spot.
(27:51):
So I showed him where they were.
I mean, obviously, it was rightthere, you know, but they
weren't where he expects them tobe, so apparently they don't
count.
Anyway, I showed it to him andhe goes oh, thank you.
And I thanked him for talkingto me and telling me what he
needed and all of that.
I try to be really good aboutreinforcing that.
Yes, this is good.
Communication is good, tryingto use your words is good,
(28:13):
asking for help is good.
I don't think it makes a damnbit of difference.
I think that he decides when hewants to do good and when he
doesn't, and communication isnot one thing that he can decide
upon.
Anyway, it seems, in my nextepisode I'm going to get into
some of the really strangebehaviors that started coming
(28:33):
out, even more strange than theother ones I've told you.
And then I would say, probablythe most damaging, devastating
realization about hisdevelopment, or lack of, I'm
going to get into that in thenext episode.
You hang in there, you're asuperhero.
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