All Episodes

April 30, 2025 • 16 mins

Send us a text

I'm developing a social equity project called S.A.F.E.R. Lifestyles, designed to create communities for families dealing with severe autism. My vision addresses how most of us lack support, with villages abandoning us when we need them most.



Contact us at contact.parentingsevereautism@gmail.com if you'd like to learn more or support the S.A.F.E.R. Lifestyles movement.


Perfect Rhodiola Discounts for You
These are some of my favorite products - Organic with no fillers, no flow agents, and no synthetics.

Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.

Support the show

https://www.buzzsprout.com/1989825/supporters/newhttps://psa.buzzsprout.com

Get Podcast Merch at the following link: https://psapodcast.creator-spring.com/

https://www.facebook.com/people/Parenting-Severe-Autism-podcast/100083292374893/

Email: contact.parentingsevereautism@gmail.com


Mark as Played
Transcript

Episode Transcript

Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:18):
Hello and welcome to the Parenting Severe Autism
Podcast.
I am your host, ShannonChamberlin.
I'm so happy that you're herewith me today.
Today I want to tell you whatI've been up to behind the
scenes in the hopes of improvingthe lives of people in our boat
, and I'm going to share theaudio version with you here.
I know I've kind of warned youabout it a little bit here and

(00:39):
there.
I've been working on a project.
I guess it's called a socialequity project of sorts.
I guess Please forgive me ifthat's not right it's not really
my field of expertise, but Iknow I see my vision and that
I'm just working on my vision.
I just want to preface it withI know this is not the best idea
for everybody, but I am lookingat providing either permanent

(01:01):
or part-time opportunities forfamilies to enjoy what I'm
trying to put together.
And it's just that most of usfeel that we don't have anyone
in our corner.
We feel that we really do needa village to raise a child and
our village has abandoned us andthe only people we really
connect with are other parentsin our boat.

(01:21):
So with that in mind, I amworking on a project.
I'm working on fiscalsponsorship and funding, and I'm
working on all of these thingsto try to make my vision a
reality in one or more placesaround the United States.
So please just take whatresonates and leave the rest
behind.

(01:41):
If it's not for you, I totallyunderstand.
I'm not asking you to doanything about it.
I'm just sharing my vision withyou and I'm asking
philanthropists etc.
To help me with it.
I don't want anything from youor your families.
You have enough to worry about.
I'm not asking you to doanything.
Okay, I just want to share thiswith you because, even though

(02:04):
we haven't met, you're always onmy mind because you're in my
boat, you're listening to mypodcasts and I know that a lot
of people have found my podcastto be helpful, so I just want to
share this with you.
I've been kind of leading up toit on social media, trying to
you know, stir the pot, startsome controversy, and I've done
really well.

(02:24):
You know, stir the pot, startsome controversy, and I've done
really well.
One of my posts is very hasupset a lot of people, but it's
also drawn a lot of parents likeus out of the woodwork.
I have had an outpouring ofgratitude and such support from
parents, very intelligent menand women on TikTok, which I
really didn't expect.
I don't know.
I've always been under theimpression that TikTok was like

(02:46):
a kid's platform and there was abunch of stupid stuff on there.
But I put out one video, kindof about what I'm working on and
it's just been amazing.
I actually had one person tellme that she would like to adopt
my kid because she thinks I hatehim and that way I could go
work on the corner like I wantto.
So I have been called a whoresimply for highlighting the

(03:09):
difference between thehigh-functioning, so-called
actually autistic communitiesand our kids.
So I mean, it's not all beennice.
I don't know.
I was really surprised that shetook it there right away, like
it just went right from I seeyour video to 'go work on the

(03:30):
street corner'.
You know, we didn't have a backand forth or anything, so it
hasn't all been good, but themajority of responses have been
really good and I've got a lotof support and I've found a lot
more families than I realizedwere out there suffering the
same way that we are.
I don't have a lot ofsubscribers to my podcast
because it is a niche thing, butI don't know, I'm really
surprised.

(03:51):
I've got thousands andthousands of families out there,
as far as I could tell, thatare in our same boat.
So I just wanted you to knowthat too, and I hope that you'll
have a listen.
I hope that if it sparks yourinterest, you'll email me and
let me know, and I hope that ifyou have any suggestions for
adding on to my vision, that youwould email me and let me know,

(04:13):
because it's a vision inprogress and I think that it
should represent the needs ofall who would be able to enjoy
it, whether on a permanent orpart-time basis.
So with that, please enjoy thefollowing 12-minute presentation
.
Hi, I'm Shannon Chamberlin.
I'm a parent and unpaidcaregiver of an adult child with

(04:36):
profound autism, and I'm thefounder of Safer Lifestyles -
Severe Autism FamiliesEducational and Recreational
Lifestyles; a movement tocreate safer communities for
individuals suffering fromsevere autism and for the
caregivers who love them.
I'm also the host of theParenting Severe Autism podcast,

(04:57):
where I give voice to whatfamilies like mine are really
going through, from earlychildhood to adulthood and
beyond.
The Safer Lifestyles Movementis the next step in that mission
because, after years ofsurviving in a system that was
never built for us.
I know it's time to buildsomething better.
You know that glossy, feel-goodversion of autism that's all

(05:19):
over social media.
That's not our reality.
That's a cover story.
While the world is out therecelebrating quirky brilliance,
families like mine are fightingdaily, invisible battles with
profound autism.
You know that popular narrativeis palatable but painfully
incomplete.
It hides the truth of severeautism what thousands of

(05:42):
families live with behind closeddoors every day.
Our children are non-verbal anddevelopmentally disabled.
They can't even tell us whenthey're mistreated.
We have to be hypervigilant forevery aspect of their lives.
In schools, our children areoften met with abuse, neglect

(06:03):
and forced conformity, insteadof just receiving understanding
and individualized care.
Most are denied appropriateeducation and desperately needed
therapies because they cannotadjust to the timeline that's
set out in the system.
It's a harsh reality that ourchildren are frequently banned
from public schools, therapygroup homes and programs.

(06:28):
They have nothing.
There's no wiggle room for ourkids, there's no soft landing.
So the public resources, evenin schools, barely address their
complex sensory, behavioral andcognitive needs.
And now, with group homesclosing across the country for
years, families are left with nolong-term care options, just

(06:51):
trapped in a system that wasnever built for them in the
first place.
So, with Safer Lifestyles, weare combining the best of three
proven care models to create onelife-changing solution for
families like mine.
For families like mine, westart with Montessori Education

(07:11):
Principles, which will bringboth the structure and the
freedom that our kidsdesperately need.
It honors individual learningstyles while building emotional
safety and trust.
It's a far cry from the abuseand neglect and forced
conformity that our children aresubjected to right now, only to
be kicked out if they don'tconform or if their parents are

(07:31):
too hypervigilant.
We also incorporatepermaculture principles to
design sustainable healingenvironments where everything
works in harmony Our land, ourspaces, our rhythms.
You have heard of other, morehealth-minded countries
recommending forest bathing, forinstance, to help with mental

(07:51):
health.
Yes, so we'll combine those twoprinciples with the assisted
living model, long-term planningand the dignity of knowing our
loved ones are safe now and inthe future.
When you put these together,along with purposeful recreation
and caregiver relief, you don'tjust build a place, you build a

(08:12):
new lifestyle, a system thathelps families live longer,
healthier, more connected livestogether with the people in the
same boat, rather than beingsparsely sprinkled throughout
the population with no support.
And the truth is this isn't rare.
According to the CDC's 2023report, over one in four

(08:33):
children with autism that's26.7% have profound autism.
That means children who willlikely need 24-7 care for the
rest of their lives.
The prevalence is 4.6 per 1,000eight-year-olds.
That means there are tens ofthousands of families living

(08:55):
this nightmare across thecountry right now, and behind
every one of those children is acaregiver.
There are more than 48 millionunpaid caregivers in this
country.
Nearly 10% of them are raisingchildren with special needs.
And we're not just parents.
We are full-time nurses,therapists, bodyguards,

(09:17):
advocates, teachers and crisisresponders, often all at once.
And we're doing it alone Withthe Safer Lifestyles Movement.
These families are notcustomers.
They're not a market to be soldto.
They are the most invisible,underserved population in the

(09:37):
disability space, and that makesthem not just our priority but
our purpose.
The numbers tell the story.
This isn't rare.
This isn't niche.
As caregivers, many of us havebeen forced to give up lucrative
careers.
We're losing an estimated$300,000 per caregiver per year
because we have educations andwe had chosen fields of

(09:59):
expertise and we were doinggreat, but we have to give it
all up the support systems thatwe need.
The group homes closed it allup.
The support systems that weneed, the group homes closed.
Special education systems areunderfunded, understaffed and
often harmful to our children.
Up to 94% of families raisingprofoundly autistic children

(10:20):
report severe isolation, stressand caregiver burnout.
These are not fringe cases.
These are families living insilence, doing the impossible
every single day.
They're superheroes, andthey've been left behind for far
too long.
So, with Safer Lifestyles, we'rebuilding a community-based
model of care, one that doesn'ttry to fit families like mine

(10:43):
into broken systems.
Our strategy starts withacquiring profitable turnkey
campground properties, sitesthat already generate income
from public reservations andrecreational offerings.
What makes this powerful is theland.
We're specifically targetingproperties with extra
undeveloped acreage.
It's land that we can transforminto a separate autism-friendly

(11:06):
environment.
We need more of those.
This is a lifestyle for us.
We don't get vacations, wedon't get to leave, we don't
become empty nesters.
This is a life sentence for allof us.
We deserve this.
We need it to be there for ourchildren.
These autism-centered zoneswill be private, they'll be

(11:28):
peaceful and they'll beprotected, designed from the
ground up for individuals withprofound autism and the
caregivers who love them.
In these spaces, we'll offerinclusive education and therapy
options, reliable andtrustworthy respite care for
caregivers to prevent caregiverburnout, and trustworthy respite

(11:49):
care for caregivers to preventcaregiver burnout.
Recreational programming thatbrings joy and structure to
daily life and, most importantly, safe long-term residential
solutions.
You have to remember, not onlydo our children need that, but
the caregivers as well.
We have been forced to give upour careers, which came with a
retirement package or some sortof plan.
We've lost everything.

(12:10):
What are we supposed to do?
What are we supposed to do?
But here's what makes all ofthis different.
Any teacher, aid or therapistwho works in our community must
be trained by the parents.
If you have met one child withprofound autism, you have met

(12:33):
one child with profound autism.
They cannot be treated exactlythe same.
Any professional who comes towork in our community must
receive training from theparents, because no degree, no
program and no policy canreplace the lived experience of
a caregiver parenting aprofoundly autistic child 24-7.

(12:55):
We are the experts and in thismodel, parents lead the culture
of care.
We are not just creatinghousing, we're creating healing,
a place where families stopsurviving and finally begin to
feel safer.
Our sustainability model is asintentional as our care

(13:17):
philosophy Acquiring profitableturnkey campground operations
with built-in income.
Many of these properties alreadygenerate income of $100,000 to
$300,000 per season.
We acquire that.
We'll build the autism safecommunity on private acreage
while expanding public offeringsto include wellness services,

(13:39):
specialty camp store products,hopefully made by our kiddos,
allowing our children theopportunity to contribute to a
community.
We can also rent out unusedtherapy and recreational
facilities.
When therapy and recreationalspaces are not being used by the
autism community, we cangenerate income by renting those

(14:00):
spaces out to the public or topractitioners.
Every public dollar strengthensthe private sanctuary.
One side supports the world,the other side protects the
families that we are here toserve.
Our total startup estimate forour flagship location is $3.76
million $2.5 million forproperty acquisition, $1.26

(14:21):
million for infrastructure suchas cabins or container home
living spaces, a Montessorischool and supplies, wellness
spaces for therapy, zen gardensfor the parents, sensory rooms
as needed.
And we're committed to doingthis without nickel and diming
the families that we serve.
And this is not a one-time ask.

(14:42):
It's the beginning of a new wayto live.
What we're building doesn'tjust change outcomes for the
child.
It transforms the life of thecaregiver, breathing new life
into the caregiver.
Remember, most of us have givenup our careers, our passions and
our identities just to survive,just to keep our kids alive and

(15:03):
functioning.
But in this community, thesecaregivers won't be sidelined.
They'll have the opportunity toreclaim their skills and put
them to work in ways that servethe village.
Whatever career they had togive up, whatever skills they
had to forget about and bury,they can resurrect and
contribute to the community thatwe build.

(15:24):
Accountants, artists, massagetherapists, yoga teachers,
groundskeepers, carpenters,plumbers, parents thriving on
socialization can run the campstore, organize the food co-op
and the community gardening,supervise canning, if they know
how to do that.
Help us create things to sellat the camp store.
Leading programs that we have.

(15:45):
These are not small perks.
These are mental healthinterventions.
When a caregiver feels seen anduseful, their stress levels
drop, their energy returns andtheir ability to care expands.
This isn't just relief, it'srestoration and it is the
foundation of sustainable care.

(16:08):
We have spent too long waitingfor systems to change.
Families like mine cannot waitany longer.
So we're building somethingreal.
Join us in building a saferlifestyle for the future Severe
Autism Families, educational,recreational Lifestyle.
We are seeking funding, we areseeking partnerships, we are
seeking strategic communitysupport.

(16:30):
If this mission moves, youdon't just admire it.
Stand with us, fund with us,build with us.
Contact us atcontactparentingsevereautism at
gmailcom.
Thank you For all youcaregivers watching this.
Hang in there.
You're a superhero.
Advertise With Us

Popular Podcasts

Stuff You Should Know
Dateline NBC

Dateline NBC

Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com

Las Culturistas with Matt Rogers and Bowen Yang

Las Culturistas with Matt Rogers and Bowen Yang

Ding dong! Join your culture consultants, Matt Rogers and Bowen Yang, on an unforgettable journey into the beating heart of CULTURE. Alongside sizzling special guests, they GET INTO the hottest pop-culture moments of the day and the formative cultural experiences that turned them into Culturistas. Produced by the Big Money Players Network and iHeartRadio.

Music, radio and podcasts, all free. Listen online or download the iHeart App.

Connect

© 2025 iHeartMedia, Inc.