October 30, 2025 • 23 mins
A roadside crash. A child on the spectrum overwhelmed by noise and confusion. One pair of headphones, a set of picture cards, and a dinosaur-weighted plush turn panic into calm. That pivot—from chaos to connection—is the heart of our conversation with Aaron and Ashlea Garofola, the co-founders of The Backwards Backpack, a grassroots nonprofit outfitting first responders, schools, and families with sensory bags that work in real time.
We dig into how the idea was born from a devastating ER moment and grew into a county-wide network where every EMS vehicle and fire truck carries tools designed for autistic kids under stress. You’ll hear exactly what goes into each backpack—noise-canceling headphones, an LCD writing tablet, visual communication cards, fidgets, chewables, snacks, water, and a four-pound weighted animal—and why these items follow evidence-based principles from occupational therapy and crisis communication. The Garofolas share powerful field stories, including a scene where a child pointed to “scared” and self-regulated once the environment quieted and choices made sense. It’s practical, repeatable, and deeply humane.
We also get tactical about safety and support at home: applying for Medicaid waivers, selecting safety beds and locks, using alarms and cameras to prevent elopement, and understanding the heightened risks around water. If you’re navigating early signs, we cover the realities of diagnosis waitlists, why to call early, and how to document regression or communication changes. From Shelby County to surrounding districts, we map the path to scale—low overhead, local sponsors, school integrations, and partnerships with multi-county agencies and foster care services—so other communities can adopt the model.
Join us to learn how a simple bag can change outcomes for autistic kids, reduce trauma on scene, and give families a toolkit they can trust. Subscribe, share with someone who needs this, and leave a review to help more counties gear up with Backwards Backpacks.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_02 (00:00):
Um, welcome to Kentucky Hidden Wonders.
(00:25):
I'm Jeanette Marson.
And I'm Mason Warren.
Together we're uncovering thesecrets, stories, and hidden
gems of Shelby County, Kentucky.
SPEAKER_03 (00:33):
From unforgettable places to off-the-beaten path
adventures, join us as weexplore Kentucky treasures and
Shelby County's best keptsecrets.
Our guests today are Aaron andAshlia Garfola, uh, the
co-founders of the BackwardsBackpack uh charity nonprofit
here in Shelby County.
Thank you all for being here.
Thank you.
All right.
(00:54):
So jumping into questions.
So, what is the backwardsbackpack?
What inspired that?
What does the name mean?
Kind of give us the background.
SPEAKER_01 (01:03):
Oh, she's gonna make me do this.
Okay.
I was looking at her and hopingshe would jump in.
This really is the passionproject of hers.
So we have four children.
Two of them are neurotypicaladults, um, and neurotypical
meaning they think and processinformation just the way most
people do.
Uh, we have two other sons thatare on the autism spectrum.
(01:24):
And so um just seeing those two,one of them is a level one, one
is level three, uh, and thereare really only three levels in
the spectrum.
So level three being the mostsevere.
So our oldest son is levelthree, most severe.
And after nine years of us justwatching him and interacting
with him and all of the thingsyou have to do to um understand
(01:44):
what it takes to support him, isuh almost impossible for for
most people.
And she has done an excellentjob of almost having a PhD and
understanding how to getMedicaid waivers and safety
equipment for our kids.
And we kind of had aconversation about we need to
share this with other people.
Um, we've had some friends ofours that have had a new
diagnosis for their kid and theycame to us and said, Where do I
(02:07):
start?
I mean, the first thing you dois there's just this panic,
right?
Now I have this diagnosis.
What other specialist should hesee?
How do I make my home safe?
You know, the all thesequestions.
And uh that was kind of thegenesis of it.
And then it grew into theoutreach program, uh part of the
backwards backpack.
So you want to talk about thethe backpacks themselves?
SPEAKER_00 (02:27):
Yeah, I think um it's important to tell the story
about how we first got the idea.
But a few years ago when myhusband was working um in a
local hospital, we had a kiddocome through the ER they did,
and he was autistic and he wasin foster care.
He had a meltdown, he wasstruggling super bad, and it was
(02:48):
at that point that the fosterparents decided they were done,
they were done.
They just left him at thehospital.
Um, and we had just had the boysnewly diagnosed, and that broke
me.
That news just literally brokeme.
So we cried.
I mean, I cried all night long.
So I said it would be so greatif we could have had some kind
of a sensory bag that we couldhave given to him to help him
(03:12):
regulate his emotions,communicate, etc.
That was where the idea wasborn.
Um, and then we kind of launchedit at the end of 24.
SPEAKER_02 (03:21):
That's a heartbreaking story.
I give I probably would havecried as well.
SPEAKER_01 (03:26):
Yeah.
SPEAKER_02 (03:26):
Oh my goodness.
So the backpacks sound amazing.
What exactly is in each of thebackpacks and how did you choose
those items?
I know well, you go ahead andjust tell us more about that.
SPEAKER_00 (03:37):
We initially decided the backpacks would be for
crisis situations.
So it would be for hospitals,local law enforcement, fire,
EMS, um, to have a tool bag intheir kit that they could give
to a kid that's having ameltdown that has just been in a
car accident or has come throughthe ER and can't get regulated
(03:58):
and might not have all the toolsthat they left at home because
it was an emergency situation.
So on the outside of the bag,you will see communication cards
that for your nonverbal kids,they can point to their
feelings, yes, no, basic needsor wants to let us know what
they need.
Then inside the bag, we have umnoise-canceling headphones, we
(04:21):
have an LCD tablet where againyour nonverbal kids could maybe
write um what they need or want.
Um, our son has recently juststarted talking, but it's still
at most one to two word phrases.
So he prefers to write at thistime.
But two years ago, he preferredto point at cards.
We have five or six fidges.
(04:42):
Um, one of those is sponsored byKozair.
We have um a salty snack, asweet snack, water, and chewies
or kind of like things that theycan put in their mouth and that
safely bite on.
And then a weighted stuffedanimal.
Of course.
So about a four-pound weightedstuffed animal that they can
just hold on to and kind of calmthem immediately.
(05:04):
Right.
SPEAKER_01 (05:04):
Yeah, everything's really about sensory for these
kids, right?
So the headphones is the firstthing.
And we've got a great story Iwant her to share about uh Fire
Chief Doty, who was on an EMSrun and really helped a kid.
Um, but the first thing we needto do is kind of quiet the
environment.
They have to process things somuch more than we do, right?
They hear every sound thateverything's happening all at
once.
And the headphones kind ofdrowns that out so they can
(05:26):
focus.
Uh so that was obviously thefirst choice for us.
SPEAKER_02 (05:30):
And I do want to hear that story.
I know um my next question wasgonna be you know, what have
haven't has anybody been able touse those in a situation?
So I'd love to hear informationabout that.
SPEAKER_00 (05:42):
So while we're getting our website up and
running, we do post a lot to ourFacebook.
And you will see on ourFacebook, um, there was a kiddo
um that was in an accident andhe had to be airlifted to the
hospital the children's hospitalin Lexington and he received a
bag.
One of his family members wasable to stop by the house, pick
it up, and go straight therewith it.
And his just his whole face litup when he opened that and got a
(06:04):
dinosaur-weighted stuffedanimal.
Um, so that was our first kindof like right there, you know,
used, tested, loved everythingin it, and it really did help
him.
Um, but the best story to dateum came from just maybe two
weeks ago when I was doing anEMS run um for another volunteer
organization that I'm involvedwith here.
(06:26):
And as we were driving to the umI guess it would be the EMS
building.
The EMS station, yeah.
We passed a wreck.
And we didn't know at the timethat there were several kids
involved and that one of thosekiddos was on the spectrum.
So fire chief Sean Doty saidthat um he was on the scene and
(06:47):
somebody came running overbecause there was this kid
standing.
He was just screaming, hecouldn't be consoled.
He was on the side of the roadand he said, somebody said, We
need earmuffs, we need earmuffsor headphones.
And he says, Why would we havethose?
I don't have those.
And another person said, Well,they have an autistic kid.
He said, Wait, I have just thething for that.
So he ran to his um vehicle, hepulled out the bag, brought it
(07:09):
over, they put the headphones onthe kid, and he immediately
stopped screaming.
So they got out the L C Dtablet.
His family was like, How do youhave this?
He has 10 of these at home andhe just calmed down.
He was writing, he pointed atthe cards, he was using
everything in the bag, but itchanged us a moment that was
beyond stressful.
I mean, nonstop screaming intojust calm and regulated.
(07:32):
So he said, Well, you know,there's a couple in our
community that have kids on thespectrum, and they've came up
with these bags, and we havethem on every, you know, fire
truck, EMS vehicle in the in thecounty.
SPEAKER_01 (07:43):
Yeah, and he was even pointing to the card saying
scared, the scared card, right?
So he was out of his element,he's on the side of the road.
It's not a place that he wantsto be.
Yeah.
And this was his only way tohave a little comfort in the
middle of the chaos.
SPEAKER_03 (07:56):
Oh my goodness.
So uh I think we jumped past ita little bit.
What does the name actuallymean?
What is what is a backward howobviously they're the backpacks
are what you're giving out, butwhat's the backwards element of
that?
SPEAKER_00 (08:07):
Our son Mason, um, when he first went to school, he
refused to put his backward, hisbackpack on on his back.
So he always wore it on thefront, um, just like that.
And since we um took thatpicture, it's just always stuck
with us, but we decided to nameit the backwards backpack
because it was one of the firstthings that you kind of noticed.
Okay, that's a little different.
Um, but since then we've learnedthat a ton of um kids on the
(08:30):
spectrum put their backpack onthat way too.
SPEAKER_02 (08:33):
Oh, yeah.
So it's pretty common.
SPEAKER_01 (08:36):
And when she got the picture, this was years ago.
She said, We're gonna dosomething with this.
This is probably gonna be ourlogo whenever we start this
nonprofit.
And at the time, I'm thinking,yeah, okay, maybe we'll do that
someday.
And then that call to actionhappened in the ER where we saw
this kid and she's like, We'renot waiting anymore.
We have to do something.
SPEAKER_02 (08:51):
Right.
So, what kind of feelings do youfeel when you hear of a backpack
being um used?
I mean, what what how how doesit make you feel?
I can imagine.
Just super accurate.
SPEAKER_00 (09:04):
Super excited um and super proud that we were able to
do this.
I just um followed up with umKelly Cable and he was saying,
Oh, I need three or four morebags.
And I was just like, yes.
And so I was like, that they'reout there, they're working.
That's amazing.
I couldn't be happier when Ithink about what we've been able
to accomplish in a short time.
(09:24):
Oh, absolutely.
SPEAKER_03 (09:25):
So, and it kind of sounds like this has been
several years in the making, butuh obviously starting a uh a
nonprofit is not uh an easyovernight small task.
And so how have uh are therehave there been any unexpected
challenges that you've faced andthen what's kind of kept you
going uh through that process?
SPEAKER_00 (09:45):
I think Aaron can elaborate more, but the
community has been the biggestum thing that keeps us going and
just the way that people havestepped up to help us.
Um my boss at Shelby Lifemagazine has one of been one of
our biggest supporters since westarted, but he's all about the
kids and giving back.
Let me know where I can help.
Um Judge Executive Dan Ison, thesecond he heard about our
(10:08):
project, he's like, I willsupport you.
I want to sponsor a bag forevery EMS vehicle in the county.
And he did that.
So I mean, that was those werethe things along with Kozair and
um different places that havejust allowed us to bring this to
life because without them, youknow, it would have been funding
on us, and I don't know how farwe would have gotten.
SPEAKER_01 (10:28):
Yeah, and talking about just the process of
establishing your nonprofit andall the paperwork that goes
into, you know, working with thestate.
Uh luckily we've got somefriends here that are attorneys
too.
So we asked them for some oftheir advice and we had no
capital, right?
There's no piles of money tohelp us start this.
So um she's got a great businessmind.
We both have MBAs.
We're like, we can figure thisout, right?
(10:49):
So she sat down one day and shestarted doing the research and
she's on the um websites for thestate and writing down all the
details.
And uh before I knew it, she'slike, we have a nonprofit.
I've already submitted all workand could you help me with this,
this, and this?
Absolutely.
SPEAKER_02 (11:04):
So um I know we talk a lot about Shelby County
because we are Shelby County.
Are you going outside of ourarea?
Um, because it's an amazingproject.
I mean, like Louisville, and Imean, I could see this being a
national nonprofit.
I really can.
SPEAKER_00 (11:19):
That's our ultimate goal.
Um, for now, we need to takecare of some stuff inside of
Simpsonville.
Um, and then next, after wereleased bags into all of the
Shelby County public schools, Ithink Henry and Spencer have
both reached out aboutpartnering with us.
So we definitely want to dothat.
We want to get them in everyspecial needs classroom in the
surrounding counties.
(11:40):
Um, and then there were a coupleorganizations that reached out
that cover multiple counties.
So we are working with them toget our bags into um an
organization that helps withkids that are going into foster
care places, placements.
So they it's not just ShelbyCounty, it's um Jefferson
County, it's all kinds ofcounties.
So um to do those biggerprojects, we have to fundraise
(12:02):
even more and get our name outthere even more.
SPEAKER_01 (12:04):
And as far as covering down for Shelby County,
which is our home, we want to dothat for sure.
It seems like every week or twoa new business comes to us and
says, we just heard about youand we have these kids in our
business.
It's a dentist's office, it'sbutterfly house, it's all these
places where they're like, if Ijust had that, I could have
maybe prevented this kid fromhaving a 30-minute meltdown.
And so we're like, all right,we've got you on the list.
(12:26):
We're gonna start doing somemore fundraising, get some more
bags, and just cover ShelbyCounty.
But yes, we would love to do itregionally.
Uh, as she said, whenever we puta backpack in every special
needs classroom in Shelby CountyPublic Schools, it spread like
wildfire.
And within probably two, threedays, we had um both Henry and
Spencer Counties reaching out tous to saying, how do we do this?
SPEAKER_02 (12:46):
Wow, absolutely.
So have have the news stations,any of the news stations reached
out to you yet?
I could this would be a greatnews story.
Not yet.
SPEAKER_00 (12:55):
I think the Sentinel has put us in for a couple of
our events.
Um they've been really goodabout that, but no, not other
than that.
We haven't.
We um plan to try to do some ofthose things in the upcoming
months, reach out to a differentfew different stations and see
if we can't be um work thatangle because we did meet a gal
from W L K Y.
SPEAKER_01 (13:15):
So we were at the Bell Awards.
SPEAKER_00 (13:17):
Yes, and congratulations on that by the
way.
SPEAKER_01 (13:19):
Yes.
Yeah, I appreciate that.
Um, we were there and at thefront table, and you have a host
with you that brings you anescort, I guess they call him.
Um, and so we got to meet her,and she said, uh, this is divine
intervention for sure.
Um, I only cover nonprofitsright now.
She said, I'm kind of covered onLouisville.
I've been doing it for a longtime, all of Jefferson County.
She's like, I don't know a lotabout Shelby County.
(13:41):
Could I get in touch with youand not only do your story, but
the VRO stuff and you know allthese other organizations that I
support?
And I said, not only that, thereare so many nonprofits in Shelby
County.
I keep you busy for two years.
So we are definitely gonnaconnect with her after the
holidays and uh see if we canget something done.
Go ahead.
SPEAKER_02 (13:58):
Absolutely.
I honestly, I mean, I can see itnational.
I see it now.
Absolutely.
Absolutely.
SPEAKER_03 (14:04):
So for families who are listening that have children
that are on the spectrum, whatkind of message or is there any
advice or anything like thatthat you'd want them to hear
just based on what you've seenfrom all of your experience
working, you know, in this uhI'll say realm uh just over the
(14:24):
last couple of months or yearseven?
SPEAKER_00 (14:28):
I would say that it's good to have support around
you, whether it be yourcommunity or your family, you're
going to need it.
Um, you know, it's not simplejust uh walking down the street
and catching a 14-year-old tobabysit your kids.
That's not a luxury we have, umespecially for those more on the
severe side of the spectrum.
But, you know, apply for thosewaivers, get those safety
(14:48):
precautions in your home, getthe safety bed, get the locks,
the alarms, the cameras, all thestuff to keep those kiddos from
eloping because a big um fearthat we have with Mason is
elopement.
He's always trying to escape.
He wants to find the next bodyof water.
Um, we share quite a bit on ourFacebook page about the dangers
(15:09):
of drowning with autism.
It's just story after storyafter story of a kid getting out
of their home and getting to alake or a pond down the road.
And, you know, most of the timethat it doesn't end well.
Um, so I think it's our numberone priority as parents should
be making sure the home is safe.
Once you realize that they haveautism and that they are trying
(15:32):
to elope and that's what thatis, get them diagnosed so that
you can get those supports putin place and you can get on
those waivers and get thatsafety bed that might cost you
15,000.
But if you have the waiver, atleast here in Kentucky, you
know, you don't end up payingfor that.
SPEAKER_02 (15:49):
Oh, that's amaz it's amazing that there's those kind
of groups out there and thatkind of help.
And I love it that you say thatpeople can call you and ask you
questions and get advice fromyou.
So, and then also for so everytime I hear you speak, both of
you, I get very excited.
I get excited about yourmission, I get excited about
(16:09):
what I see, what I can envisionfor you.
Um, but for families that arelistening right now or people um
that are also excited, how canthey help?
Um, how can they get involved ordonate?
Um, give the listeners someinformation.
SPEAKER_00 (16:25):
So we have a donate now button on our Facebook
currently.
We are in the process with somehelp from a good friend of
creating a website.
But I am the only one that, orAaron, that responds to our
messages on Facebook.
Um, so you can message us, youcan even send us an email, the
backwardsbackpack at gmail.com.
Um But other than that, we westuff the bags in our basement.
(16:49):
We kind of have our own littleprocess going there.
So I mean, zero overheads.
So the donations go all to thebackpacks.
Um, but we are having a big NewYear's Eve event that the that
you've all sponsored um at thetourism office as long as as
well as the chamber.
Um, but we will need volunteersat that event.
We will need sponsors for thatevent.
(17:10):
Um, and it's all about raisingawareness.
SPEAKER_02 (17:12):
So talking a little bit about the event, because
that does that goes towards yournonprofit as well.
So um, Aaron.
SPEAKER_01 (17:19):
Yeah, this is the inaugural event.
This is the first time.
So as a chamber, we're alwaystrying to evolve.
And I probably should back upand say I've been on the board
for about five years.
I'm on the executive committee,and uh, we've seen what worked,
we've seen what doesn't, uh, howmany people like to come to
certain events and not.
Um, so we've actually taken twoevents that were not as
successful last year andreplaced those with the New
(17:41):
Year's Eve event.
What we hear all the time inShelby County is there's nothing
to do for New Year's Eve.
And we said, why can't we be thecatalyst for changing that?
And so uh this is the first timewe're gonna do this.
We actually have a large band.
It's like a seven, nine,ten-piece band.
I don't know, it's a huge band.
You've got brass, you've gotpercussion, you've got it all.
SPEAKER_02 (17:58):
So that's exciting.
SPEAKER_01 (17:59):
We decided to go a little bit bigger and really
have a good time.
Uh and so we're super excited.
I know it's just started gettingout there on social media, so
you're gonna see it everywhere.
SPEAKER_02 (18:09):
So you can't get tickets for that yet.
SPEAKER_01 (18:11):
You actually can.
SPEAKER_02 (18:11):
Oh, you can.
SPEAKER_01 (18:13):
Yeah.
So I don't remember the actualticket price per individual.
I know they're doing tables fora thousand, uh, tables of eight,
but there are individual ticketsales as well.
85.
SPEAKER_02 (18:22):
Oh, fantastic.
SPEAKER_01 (18:23):
Yeah, so individuals can go, and uh 50% of the
proceeds will come to thebackwards backpack.
So chamber will have some ofthose proceeds and us.
That's amazing.
SPEAKER_02 (18:31):
That is so amazing.
And I guess it'd be on theChamber website, absolutely
tickets, Facebook page.
SPEAKER_01 (18:36):
Okay.
Absolutely.
And Mason, you asked a goodquestion.
I wanted to elaborate on whatyou said is what do you want the
listeners to know?
And the first thing I always sayis you're not alone.
I mean, that's really what westruggled with, is that you just
feel like you're the only onedoing this.
And literally, from especiallywith level threes, from the time
Mason wakes up until the time hegoes to bed in a safety bed,
it's where's Mason?
What's he trying to escape?
(18:58):
Is he trying to destroysomething?
SPEAKER_00 (18:59):
In his mouth.
SPEAKER_01 (19:00):
Is he gonna choke on something?
Yeah, so you constantly have tobe on guard and being on all the
time is exhausting.
Yeah.
And so I want people to knowthat we're available.
And it's called a spectrum for areason.
Not every kid needs the samething.
We have a level one, we have alevel three.
Our level one is in a normaltypical classroom in first
grade, and he's doing reallywell.
(19:21):
Uh, he needs a little bit extrasupport on some of his stuff,
but doing very well.
Uh, our other one, like I said,it's just a constant need for us
to be able to intervene, keephim safe, those kind of things.
So uh, and there's all stuff inbetween.
So call us and tell us whatyou're struggling with, what you
need help with, and we want tobe the reason uh or the ability
to connect some dots for you.
SPEAKER_00 (19:41):
Let's sit down, have lunch.
I've done that a couple of timesin the past few months, just
meeting people.
And I'm always on the phone,even with people from national
autism groups where they're,what have you done?
What what's helped you?
And I'm always eager to take aphone call and walk through that
and talk to you.
Yeah.
SPEAKER_01 (19:57):
And that was another reason that we started this, is
because she's on these momsgroups and she's talked to
people all over the country.
She may be talking to somebodyin Oregon that's struggling with
something.
And I said, We can do this inour own hometown too.
And that was another reason forus to start the organization.
SPEAKER_00 (20:12):
I mean, because when our sons were diagnosed, it was
the first we'd really heardabout autism at all.
SPEAKER_01 (20:17):
Right.
SPEAKER_00 (20:17):
No one in our family had autism.
No one even talked about it.
So I mean, we went through allthose emotions together and
Yeah, and we had twoneurotypical daughters, right?
SPEAKER_01 (20:26):
And so that it was all that we knew, and now
there's this huge change.
And I think something else thathelps us be very well-rounded in
this is that we've seenneurotypical and raised
neurotypical kids intoadulthood, and now we have kids
on the spectrum.
So we've seen it literallyalmost all of it.
Uh, and we use those experiencesto try to help other people.
SPEAKER_02 (20:45):
Well, you both are amazing, and I love your caring
hearts and and the mission foryour nonprofit is amazing as
well.
Uh Mason, did you have any otherquestions?
SPEAKER_03 (20:56):
No, uh just are there um a proportion of our
listening audiences kind ofbased in this Kentucky
Louisville area of Kentucky.
If there are parents that arelistening that maybe feel like
they need some additionalsupport or just they're curious,
you know, about an autismassessment diagnosis type thing,
(21:19):
where where do you start withthat?
Like how do you kind of go aboutthat?
SPEAKER_00 (21:23):
Well, there's only a couple places locally in
Louisville that do diagnose.
Um, there's a lot ofqualifications that go into
that.
You can't just go to yourregular pediatrician and get a
diagnosis.
There are centers.
Um and the waiting lists arelong.
So I encourage you that that ifyou even think that your child
might be on the spectrum to getthat phone call made and get on
(21:45):
that list.
Um, because it what I last heardwas that it's at least a year.
Wow.
Um, so you definitely want tocall and get on that list right
away.
So, you know, you could alwaystake yourself off later, but
that's the first step.
Um, this researching.
I mean, I think there's two orthree places locally that do
diagnose, but they all have thewaiting list very similar.
SPEAKER_01 (22:07):
Yeah, and I would say do it early because people
oftentimes think, well, this isjust he's one year old.
Yeah, he'll get past this.
He's two.
He's uh but we notice that he'snot developing at the same rate
as his peers.
Get in there, especially withthe waiting list, and let a
professional at least give youtheir opinion on where they're
at and start your journey fromthere.
SPEAKER_00 (22:26):
And for our kids, I mean, just to put it in
perspective, we um didn't reallynotice anything.
And I would say that actuallythey were developing just as
neurotypical children woulduntil about two.
And then they regressed, andthat's when they lost their
speech.
Both of them did.
Um, so those were kind of thebig signs they wouldn't respond
to their name, they wouldn'tlook at you, they didn't play
(22:46):
peekaboo, they didn't makeanimal noises anymore, they
didn't play with their toys likethey used to.
We lined everything up for us.
Those were the big first thingsthat kind of stuck out to us.
SPEAKER_02 (22:58):
Wow, thank you.
Thank you both for being withus.
It's a lot of great information.
Um, I love it that people have aplace to go.
I'm glad that schools havechanged over the years and that
there's help there.
But thank you for all you do.
And um, hopefully people willreach out and uh definitely
donate towards your great cause.
(23:18):
Thank you so much.
SPEAKER_01 (23:20):
Thanks for having us.
We appreciate it so much.
SPEAKER_03 (23:24):
Kentucky Hidden Wonders is a Shelby KY Tourism
production.
Your hosts are Janette Marsonand Mason Moore.
To learn more about Shelby KYTourism and to start planning a
visit, head to visitselbyky.com.
Um, welcome to Kentucky Hidden Wonders.
(00:25):
I'm Jeanette Marson.
And I'm Mason Warren.
Together we're uncovering thesecrets, stories, and hidden
gems of Shelby County, Kentucky.
SPEAKER_03 (00:33):
From unforgettable places to off-the-beaten path
adventures, join us as weexplore Kentucky treasures and
Shelby County's best keptsecrets.
Our guests today are Aaron andAshlia Garfola, uh, the
co-founders of the BackwardsBackpack uh charity nonprofit
here in Shelby County.
Thank you all for being here.
Thank you.
All right.
(00:54):
So jumping into questions.
So, what is the backwardsbackpack?
What inspired that?
What does the name mean?
Kind of give us the background.
SPEAKER_01 (01:03):
Oh, she's gonna make me do this.
Okay.
I was looking at her and hopingshe would jump in.
This really is the passionproject of hers.
So we have four children.
Two of them are neurotypicaladults, um, and neurotypical
meaning they think and processinformation just the way most
people do.
Uh, we have two other sons thatare on the autism spectrum.
(01:24):
And so um just seeing those two,one of them is a level one, one
is level three, uh, and thereare really only three levels in
the spectrum.
So level three being the mostsevere.
So our oldest son is levelthree, most severe.
And after nine years of us justwatching him and interacting
with him and all of the thingsyou have to do to um understand
(01:44):
what it takes to support him, isuh almost impossible for for
most people.
And she has done an excellentjob of almost having a PhD and
understanding how to getMedicaid waivers and safety
equipment for our kids.
And we kind of had aconversation about we need to
share this with other people.
Um, we've had some friends ofours that have had a new
diagnosis for their kid and theycame to us and said, Where do I
(02:07):
start?
I mean, the first thing you dois there's just this panic,
right?
Now I have this diagnosis.
What other specialist should hesee?
How do I make my home safe?
You know, the all thesequestions.
And uh that was kind of thegenesis of it.
And then it grew into theoutreach program, uh part of the
backwards backpack.
So you want to talk about thethe backpacks themselves?
SPEAKER_00 (02:27):
Yeah, I think um it's important to tell the story
about how we first got the idea.
But a few years ago when myhusband was working um in a
local hospital, we had a kiddocome through the ER they did,
and he was autistic and he wasin foster care.
He had a meltdown, he wasstruggling super bad, and it was
(02:48):
at that point that the fosterparents decided they were done,
they were done.
They just left him at thehospital.
Um, and we had just had the boysnewly diagnosed, and that broke
me.
That news just literally brokeme.
So we cried.
I mean, I cried all night long.
So I said it would be so greatif we could have had some kind
of a sensory bag that we couldhave given to him to help him
(03:12):
regulate his emotions,communicate, etc.
That was where the idea wasborn.
Um, and then we kind of launchedit at the end of 24.
SPEAKER_02 (03:21):
That's a heartbreaking story.
I give I probably would havecried as well.
SPEAKER_01 (03:26):
Yeah.
SPEAKER_02 (03:26):
Oh my goodness.
So the backpacks sound amazing.
What exactly is in each of thebackpacks and how did you choose
those items?
I know well, you go ahead andjust tell us more about that.
SPEAKER_00 (03:37):
We initially decided the backpacks would be for
crisis situations.
So it would be for hospitals,local law enforcement, fire,
EMS, um, to have a tool bag intheir kit that they could give
to a kid that's having ameltdown that has just been in a
car accident or has come throughthe ER and can't get regulated
(03:58):
and might not have all the toolsthat they left at home because
it was an emergency situation.
So on the outside of the bag,you will see communication cards
that for your nonverbal kids,they can point to their
feelings, yes, no, basic needsor wants to let us know what
they need.
Then inside the bag, we have umnoise-canceling headphones, we
(04:21):
have an LCD tablet where againyour nonverbal kids could maybe
write um what they need or want.
Um, our son has recently juststarted talking, but it's still
at most one to two word phrases.
So he prefers to write at thistime.
But two years ago, he preferredto point at cards.
We have five or six fidges.
(04:42):
Um, one of those is sponsored byKozair.
We have um a salty snack, asweet snack, water, and chewies
or kind of like things that theycan put in their mouth and that
safely bite on.
And then a weighted stuffedanimal.
Of course.
So about a four-pound weightedstuffed animal that they can
just hold on to and kind of calmthem immediately.
(05:04):
Right.
SPEAKER_01 (05:04):
Yeah, everything's really about sensory for these
kids, right?
So the headphones is the firstthing.
And we've got a great story Iwant her to share about uh Fire
Chief Doty, who was on an EMSrun and really helped a kid.
Um, but the first thing we needto do is kind of quiet the
environment.
They have to process things somuch more than we do, right?
They hear every sound thateverything's happening all at
once.
And the headphones kind ofdrowns that out so they can
(05:26):
focus.
Uh so that was obviously thefirst choice for us.
SPEAKER_02 (05:30):
And I do want to hear that story.
I know um my next question wasgonna be you know, what have
haven't has anybody been able touse those in a situation?
So I'd love to hear informationabout that.
SPEAKER_00 (05:42):
So while we're getting our website up and
running, we do post a lot to ourFacebook.
And you will see on ourFacebook, um, there was a kiddo
um that was in an accident andhe had to be airlifted to the
hospital the children's hospitalin Lexington and he received a
bag.
One of his family members wasable to stop by the house, pick
it up, and go straight therewith it.
And his just his whole face litup when he opened that and got a
(06:04):
dinosaur-weighted stuffedanimal.
Um, so that was our first kindof like right there, you know,
used, tested, loved everythingin it, and it really did help
him.
Um, but the best story to dateum came from just maybe two
weeks ago when I was doing anEMS run um for another volunteer
organization that I'm involvedwith here.
(06:26):
And as we were driving to the umI guess it would be the EMS
building.
The EMS station, yeah.
We passed a wreck.
And we didn't know at the timethat there were several kids
involved and that one of thosekiddos was on the spectrum.
So fire chief Sean Doty saidthat um he was on the scene and
(06:47):
somebody came running overbecause there was this kid
standing.
He was just screaming, hecouldn't be consoled.
He was on the side of the roadand he said, somebody said, We
need earmuffs, we need earmuffsor headphones.
And he says, Why would we havethose?
I don't have those.
And another person said, Well,they have an autistic kid.
He said, Wait, I have just thething for that.
So he ran to his um vehicle, hepulled out the bag, brought it
(07:09):
over, they put the headphones onthe kid, and he immediately
stopped screaming.
So they got out the L C Dtablet.
His family was like, How do youhave this?
He has 10 of these at home andhe just calmed down.
He was writing, he pointed atthe cards, he was using
everything in the bag, but itchanged us a moment that was
beyond stressful.
I mean, nonstop screaming intojust calm and regulated.
(07:32):
So he said, Well, you know,there's a couple in our
community that have kids on thespectrum, and they've came up
with these bags, and we havethem on every, you know, fire
truck, EMS vehicle in the in thecounty.
SPEAKER_01 (07:43):
Yeah, and he was even pointing to the card saying
scared, the scared card, right?
So he was out of his element,he's on the side of the road.
It's not a place that he wantsto be.
Yeah.
And this was his only way tohave a little comfort in the
middle of the chaos.
SPEAKER_03 (07:56):
Oh my goodness.
So uh I think we jumped past ita little bit.
What does the name actuallymean?
What is what is a backward howobviously they're the backpacks
are what you're giving out, butwhat's the backwards element of
that?
SPEAKER_00 (08:07):
Our son Mason, um, when he first went to school, he
refused to put his backward, hisbackpack on on his back.
So he always wore it on thefront, um, just like that.
And since we um took thatpicture, it's just always stuck
with us, but we decided to nameit the backwards backpack
because it was one of the firstthings that you kind of noticed.
Okay, that's a little different.
Um, but since then we've learnedthat a ton of um kids on the
(08:30):
spectrum put their backpack onthat way too.
SPEAKER_02 (08:33):
Oh, yeah.
So it's pretty common.
SPEAKER_01 (08:36):
And when she got the picture, this was years ago.
She said, We're gonna dosomething with this.
This is probably gonna be ourlogo whenever we start this
nonprofit.
And at the time, I'm thinking,yeah, okay, maybe we'll do that
someday.
And then that call to actionhappened in the ER where we saw
this kid and she's like, We'renot waiting anymore.
We have to do something.
SPEAKER_02 (08:51):
Right.
So, what kind of feelings do youfeel when you hear of a backpack
being um used?
I mean, what what how how doesit make you feel?
I can imagine.
Just super accurate.
SPEAKER_00 (09:04):
Super excited um and super proud that we were able to
do this.
I just um followed up with umKelly Cable and he was saying,
Oh, I need three or four morebags.
And I was just like, yes.
And so I was like, that they'reout there, they're working.
That's amazing.
I couldn't be happier when Ithink about what we've been able
to accomplish in a short time.
(09:24):
Oh, absolutely.
SPEAKER_03 (09:25):
So, and it kind of sounds like this has been
several years in the making, butuh obviously starting a uh a
nonprofit is not uh an easyovernight small task.
And so how have uh are therehave there been any unexpected
challenges that you've faced andthen what's kind of kept you
going uh through that process?
SPEAKER_00 (09:45):
I think Aaron can elaborate more, but the
community has been the biggestum thing that keeps us going and
just the way that people havestepped up to help us.
Um my boss at Shelby Lifemagazine has one of been one of
our biggest supporters since westarted, but he's all about the
kids and giving back.
Let me know where I can help.
Um Judge Executive Dan Ison, thesecond he heard about our
(10:08):
project, he's like, I willsupport you.
I want to sponsor a bag forevery EMS vehicle in the county.
And he did that.
So I mean, that was those werethe things along with Kozair and
um different places that havejust allowed us to bring this to
life because without them, youknow, it would have been funding
on us, and I don't know how farwe would have gotten.
SPEAKER_01 (10:28):
Yeah, and talking about just the process of
establishing your nonprofit andall the paperwork that goes
into, you know, working with thestate.
Uh luckily we've got somefriends here that are attorneys
too.
So we asked them for some oftheir advice and we had no
capital, right?
There's no piles of money tohelp us start this.
So um she's got a great businessmind.
We both have MBAs.
We're like, we can figure thisout, right?
(10:49):
So she sat down one day and shestarted doing the research and
she's on the um websites for thestate and writing down all the
details.
And uh before I knew it, she'slike, we have a nonprofit.
I've already submitted all workand could you help me with this,
this, and this?
Absolutely.
SPEAKER_02 (11:04):
So um I know we talk a lot about Shelby County
because we are Shelby County.
Are you going outside of ourarea?
Um, because it's an amazingproject.
I mean, like Louisville, and Imean, I could see this being a
national nonprofit.
I really can.
SPEAKER_00 (11:19):
That's our ultimate goal.
Um, for now, we need to takecare of some stuff inside of
Simpsonville.
Um, and then next, after wereleased bags into all of the
Shelby County public schools, Ithink Henry and Spencer have
both reached out aboutpartnering with us.
So we definitely want to dothat.
We want to get them in everyspecial needs classroom in the
surrounding counties.
(11:40):
Um, and then there were a coupleorganizations that reached out
that cover multiple counties.
So we are working with them toget our bags into um an
organization that helps withkids that are going into foster
care places, placements.
So they it's not just ShelbyCounty, it's um Jefferson
County, it's all kinds ofcounties.
So um to do those biggerprojects, we have to fundraise
(12:02):
even more and get our name outthere even more.
SPEAKER_01 (12:04):
And as far as covering down for Shelby County,
which is our home, we want to dothat for sure.
It seems like every week or twoa new business comes to us and
says, we just heard about youand we have these kids in our
business.
It's a dentist's office, it'sbutterfly house, it's all these
places where they're like, if Ijust had that, I could have
maybe prevented this kid fromhaving a 30-minute meltdown.
And so we're like, all right,we've got you on the list.
(12:26):
We're gonna start doing somemore fundraising, get some more
bags, and just cover ShelbyCounty.
But yes, we would love to do itregionally.
Uh, as she said, whenever we puta backpack in every special
needs classroom in Shelby CountyPublic Schools, it spread like
wildfire.
And within probably two, threedays, we had um both Henry and
Spencer Counties reaching out tous to saying, how do we do this?
SPEAKER_02 (12:46):
Wow, absolutely.
So have have the news stations,any of the news stations reached
out to you yet?
I could this would be a greatnews story.
Not yet.
SPEAKER_00 (12:55):
I think the Sentinel has put us in for a couple of
our events.
Um they've been really goodabout that, but no, not other
than that.
We haven't.
We um plan to try to do some ofthose things in the upcoming
months, reach out to a differentfew different stations and see
if we can't be um work thatangle because we did meet a gal
from W L K Y.
SPEAKER_01 (13:15):
So we were at the Bell Awards.
SPEAKER_00 (13:17):
Yes, and congratulations on that by the
way.
SPEAKER_01 (13:19):
Yes.
Yeah, I appreciate that.
Um, we were there and at thefront table, and you have a host
with you that brings you anescort, I guess they call him.
Um, and so we got to meet her,and she said, uh, this is divine
intervention for sure.
Um, I only cover nonprofitsright now.
She said, I'm kind of covered onLouisville.
I've been doing it for a longtime, all of Jefferson County.
She's like, I don't know a lotabout Shelby County.
(13:41):
Could I get in touch with youand not only do your story, but
the VRO stuff and you know allthese other organizations that I
support?
And I said, not only that, thereare so many nonprofits in Shelby
County.
I keep you busy for two years.
So we are definitely gonnaconnect with her after the
holidays and uh see if we canget something done.
Go ahead.
SPEAKER_02 (13:58):
Absolutely.
I honestly, I mean, I can see itnational.
I see it now.
Absolutely.
Absolutely.
SPEAKER_03 (14:04):
So for families who are listening that have children
that are on the spectrum, whatkind of message or is there any
advice or anything like thatthat you'd want them to hear
just based on what you've seenfrom all of your experience
working, you know, in this uhI'll say realm uh just over the
(14:24):
last couple of months or yearseven?
SPEAKER_00 (14:28):
I would say that it's good to have support around
you, whether it be yourcommunity or your family, you're
going to need it.
Um, you know, it's not simplejust uh walking down the street
and catching a 14-year-old tobabysit your kids.
That's not a luxury we have, umespecially for those more on the
severe side of the spectrum.
But, you know, apply for thosewaivers, get those safety
(14:48):
precautions in your home, getthe safety bed, get the locks,
the alarms, the cameras, all thestuff to keep those kiddos from
eloping because a big um fearthat we have with Mason is
elopement.
He's always trying to escape.
He wants to find the next bodyof water.
Um, we share quite a bit on ourFacebook page about the dangers
(15:09):
of drowning with autism.
It's just story after storyafter story of a kid getting out
of their home and getting to alake or a pond down the road.
And, you know, most of the timethat it doesn't end well.
Um, so I think it's our numberone priority as parents should
be making sure the home is safe.
Once you realize that they haveautism and that they are trying
(15:32):
to elope and that's what thatis, get them diagnosed so that
you can get those supports putin place and you can get on
those waivers and get thatsafety bed that might cost you
15,000.
But if you have the waiver, atleast here in Kentucky, you
know, you don't end up payingfor that.
SPEAKER_02 (15:49):
Oh, that's amaz it's amazing that there's those kind
of groups out there and thatkind of help.
And I love it that you say thatpeople can call you and ask you
questions and get advice fromyou.
So, and then also for so everytime I hear you speak, both of
you, I get very excited.
I get excited about yourmission, I get excited about
(16:09):
what I see, what I can envisionfor you.
Um, but for families that arelistening right now or people um
that are also excited, how canthey help?
Um, how can they get involved ordonate?
Um, give the listeners someinformation.
SPEAKER_00 (16:25):
So we have a donate now button on our Facebook
currently.
We are in the process with somehelp from a good friend of
creating a website.
But I am the only one that, orAaron, that responds to our
messages on Facebook.
Um, so you can message us, youcan even send us an email, the
backwardsbackpack at gmail.com.
Um But other than that, we westuff the bags in our basement.
(16:49):
We kind of have our own littleprocess going there.
So I mean, zero overheads.
So the donations go all to thebackpacks.
Um, but we are having a big NewYear's Eve event that the that
you've all sponsored um at thetourism office as long as as
well as the chamber.
Um, but we will need volunteersat that event.
We will need sponsors for thatevent.
(17:10):
Um, and it's all about raisingawareness.
SPEAKER_02 (17:12):
So talking a little bit about the event, because
that does that goes towards yournonprofit as well.
So um, Aaron.
SPEAKER_01 (17:19):
Yeah, this is the inaugural event.
This is the first time.
So as a chamber, we're alwaystrying to evolve.
And I probably should back upand say I've been on the board
for about five years.
I'm on the executive committee,and uh, we've seen what worked,
we've seen what doesn't, uh, howmany people like to come to
certain events and not.
Um, so we've actually taken twoevents that were not as
successful last year andreplaced those with the New
(17:41):
Year's Eve event.
What we hear all the time inShelby County is there's nothing
to do for New Year's Eve.
And we said, why can't we be thecatalyst for changing that?
And so uh this is the first timewe're gonna do this.
We actually have a large band.
It's like a seven, nine,ten-piece band.
I don't know, it's a huge band.
You've got brass, you've gotpercussion, you've got it all.
SPEAKER_02 (17:58):
So that's exciting.
SPEAKER_01 (17:59):
We decided to go a little bit bigger and really
have a good time.
Uh and so we're super excited.
I know it's just started gettingout there on social media, so
you're gonna see it everywhere.
SPEAKER_02 (18:09):
So you can't get tickets for that yet.
SPEAKER_01 (18:11):
You actually can.
SPEAKER_02 (18:11):
Oh, you can.
SPEAKER_01 (18:13):
Yeah.
So I don't remember the actualticket price per individual.
I know they're doing tables fora thousand, uh, tables of eight,
but there are individual ticketsales as well.
85.
SPEAKER_02 (18:22):
Oh, fantastic.
SPEAKER_01 (18:23):
Yeah, so individuals can go, and uh 50% of the
proceeds will come to thebackwards backpack.
So chamber will have some ofthose proceeds and us.
That's amazing.
SPEAKER_02 (18:31):
That is so amazing.
And I guess it'd be on theChamber website, absolutely
tickets, Facebook page.
SPEAKER_01 (18:36):
Okay.
Absolutely.
And Mason, you asked a goodquestion.
I wanted to elaborate on whatyou said is what do you want the
listeners to know?
And the first thing I always sayis you're not alone.
I mean, that's really what westruggled with, is that you just
feel like you're the only onedoing this.
And literally, from especiallywith level threes, from the time
Mason wakes up until the time hegoes to bed in a safety bed,
it's where's Mason?
What's he trying to escape?
(18:58):
Is he trying to destroysomething?
SPEAKER_00 (18:59):
In his mouth.
SPEAKER_01 (19:00):
Is he gonna choke on something?
Yeah, so you constantly have tobe on guard and being on all the
time is exhausting.
Yeah.
And so I want people to knowthat we're available.
And it's called a spectrum for areason.
Not every kid needs the samething.
We have a level one, we have alevel three.
Our level one is in a normaltypical classroom in first
grade, and he's doing reallywell.
(19:21):
Uh, he needs a little bit extrasupport on some of his stuff,
but doing very well.
Uh, our other one, like I said,it's just a constant need for us
to be able to intervene, keephim safe, those kind of things.
So uh, and there's all stuff inbetween.
So call us and tell us whatyou're struggling with, what you
need help with, and we want tobe the reason uh or the ability
to connect some dots for you.
SPEAKER_00 (19:41):
Let's sit down, have lunch.
I've done that a couple of timesin the past few months, just
meeting people.
And I'm always on the phone,even with people from national
autism groups where they're,what have you done?
What what's helped you?
And I'm always eager to take aphone call and walk through that
and talk to you.
Yeah.
SPEAKER_01 (19:57):
And that was another reason that we started this, is
because she's on these momsgroups and she's talked to
people all over the country.
She may be talking to somebodyin Oregon that's struggling with
something.
And I said, We can do this inour own hometown too.
And that was another reason forus to start the organization.
SPEAKER_00 (20:12):
I mean, because when our sons were diagnosed, it was
the first we'd really heardabout autism at all.
SPEAKER_01 (20:17):
Right.
SPEAKER_00 (20:17):
No one in our family had autism.
No one even talked about it.
So I mean, we went through allthose emotions together and
Yeah, and we had twoneurotypical daughters, right?
SPEAKER_01 (20:26):
And so that it was all that we knew, and now
there's this huge change.
And I think something else thathelps us be very well-rounded in
this is that we've seenneurotypical and raised
neurotypical kids intoadulthood, and now we have kids
on the spectrum.
So we've seen it literallyalmost all of it.
Uh, and we use those experiencesto try to help other people.
SPEAKER_02 (20:45):
Well, you both are amazing, and I love your caring
hearts and and the mission foryour nonprofit is amazing as
well.
Uh Mason, did you have any otherquestions?
SPEAKER_03 (20:56):
No, uh just are there um a proportion of our
listening audiences kind ofbased in this Kentucky
Louisville area of Kentucky.
If there are parents that arelistening that maybe feel like
they need some additionalsupport or just they're curious,
you know, about an autismassessment diagnosis type thing,
(21:19):
where where do you start withthat?
Like how do you kind of go aboutthat?
SPEAKER_00 (21:23):
Well, there's only a couple places locally in
Louisville that do diagnose.
Um, there's a lot ofqualifications that go into
that.
You can't just go to yourregular pediatrician and get a
diagnosis.
There are centers.
Um and the waiting lists arelong.
So I encourage you that that ifyou even think that your child
might be on the spectrum to getthat phone call made and get on
(21:45):
that list.
Um, because it what I last heardwas that it's at least a year.
Wow.
Um, so you definitely want tocall and get on that list right
away.
So, you know, you could alwaystake yourself off later, but
that's the first step.
Um, this researching.
I mean, I think there's two orthree places locally that do
diagnose, but they all have thewaiting list very similar.
SPEAKER_01 (22:07):
Yeah, and I would say do it early because people
oftentimes think, well, this isjust he's one year old.
Yeah, he'll get past this.
He's two.
He's uh but we notice that he'snot developing at the same rate
as his peers.
Get in there, especially withthe waiting list, and let a
professional at least give youtheir opinion on where they're
at and start your journey fromthere.
SPEAKER_00 (22:26):
And for our kids, I mean, just to put it in
perspective, we um didn't reallynotice anything.
And I would say that actuallythey were developing just as
neurotypical children woulduntil about two.
And then they regressed, andthat's when they lost their
speech.
Both of them did.
Um, so those were kind of thebig signs they wouldn't respond
to their name, they wouldn'tlook at you, they didn't play
(22:46):
peekaboo, they didn't makeanimal noises anymore, they
didn't play with their toys likethey used to.
We lined everything up for us.
Those were the big first thingsthat kind of stuck out to us.
SPEAKER_02 (22:58):
Wow, thank you.
Thank you both for being withus.
It's a lot of great information.
Um, I love it that people have aplace to go.
I'm glad that schools havechanged over the years and that
there's help there.
But thank you for all you do.
And um, hopefully people willreach out and uh definitely
donate towards your great cause.
(23:18):
Thank you so much.
SPEAKER_01 (23:20):
Thanks for having us.
We appreciate it so much.
SPEAKER_03 (23:24):
Kentucky Hidden Wonders is a Shelby KY Tourism
production.
Your hosts are Janette Marsonand Mason Moore.
To learn more about Shelby KYTourism and to start planning a
visit, head to visitselbyky.com.
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