Episode Transcript
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(00:02):
Welcome back to Take Care Time,the Tales and Exhales of
Caregivers.
I'm your host, Beverly Nance,and this is episode five of our
series The Spectrum, A podcastjourney into the lives of two
families raising children onopposite ends of the autism
spectrum.
We've walked beside the Martinsand the Sadlers.
(00:24):
We've heard from Riley and Maya,two sisters whose voices.
We're often quieted in thechaos, and we've explored how
society and the media havechosen, which autism stories to
spotlight and which ones toignore.
But today we're talking aboutendings, or at least what feels
(00:45):
like one, because if you'reraising a child with autism,
whether they're verbal ornonverbal, thriving or
struggling, you know, theticking clock.
You know the system is built tosupport children and that one
day, whether you're ready ornot, that yellow school bus
stops showing up.
The service is tied to educationvanish, and what's left behind
(01:10):
often is nothing.
Today's episode is called theEnd of the Bell because for many
Families, when the school bellrings for the last time, it's
not a celebration.
It's the start of the unknown.
This is the Spectrum, episodefive.
(02:01):
Karen Satler stands in thedoorway of what used to be her
son's classroom.
It's quiet now.
The bulletin boards are empty.
The art on the wall has beentaken down.
Greg's class graduated lastweek.
Only, it wasn't a graduation.
Not really.
There were no caps.
No gowns, no future mapped out.
(02:23):
Greg turned 22 last month, andwith that birthday, his rights
to a free and appropriate publiceducation ended just like that.
Karen didn't cry at theceremony.
She was too tired, too numb.
There were three other momsstanding beside her that day.
Their arms folded, their eyesred.
(02:44):
They whispered to each other,what now?
And the truth was, no one had agood answer for the saddlers.
The road leading up to thismoment had been both winding and
warned.
Greg's school had been aconstant, even when he
struggled.
Even when he lashed out, evenwhen the system failed to fully
(03:06):
understand him, it was a place,it was predictable, it was
structured.
Now that structure was gone,Karen tells her husband, Daniel,
over dinner, we need to figureout what comes next.
But Daniel doesn't respond rightaway.
(03:26):
He's staring at the spaghetti onhis plate.
Maybe we should have startedplanning earlier.
He finally says she doesn'targue because she's thought that
too.
But she also remembers the IEPmeetings, the way the school
district talked about transitionplanning, but never offered much
more than vague flyers and achecklist about adult services,
(03:49):
which led to disconnected phonenumbers and full of wait list.
Where do we even start, Karen?
Ask.
And the silence that followssays, nothing.
Aging out of the school system.
Sometimes called the servicescliff.
Happens at age 21 or 22,depending on your state.
(04:11):
And for parents of kids withprofound autism, it feels like
being pushed off a ledge intothe fog during school years, a
child may receive.
Speech therapy, occupationaltherapy, behavior support,
transportation, social skillstraining, and access to
structured environments, allguaranteed under federal law.
(04:32):
After graduation, most of thatdisappears, and unless you've
been able to secure a Medicaidwaiver, which can take years,
even decades, there are a fewoptions left.
The Satler had applied forGreg's waiver when he was 10.
He was placed on a list.
He's still on the list on theother side of the street.
(04:57):
The Martin family alsonavigating the after Sean, who
is also aged outta school andlives at home, has a part-time
job at a local grocery store,bagging items and routing up
carts.
His parents feel fortunate.
But even so, the support theyonce had from the school system
is long gone.
(05:23):
Employment after school ends isa complicated road, especially
when autism is in the picturefor individuals.
On the higher end of thespectrum, there may be
opportunities for supportedemployment internships, or
part-time work.
Yet even those come withbarriers like social challenges,
lack of transportation, andemployer bias.
(05:44):
For those on the lower end ofthe spectrum, the picture is far
more bleak.
Traditional jobs are often outof reach and there are too few
programs that offer meaningfulstructured day services or skill
building opportunities.
The result, a generation ofadults with autism, eager,
capable in their own ways, andyet largely excluded from the
(06:06):
workforce.
Families watch their youngadults lose purpose, connection,
and progress, all because thesystem wasn't built to include
them.
Yes, aging outta school can feellike a free fall.
Services vanish.
Routines collapse, and familiesare left to build something from
scraps.
But amid the struggle, there ishope and progress.
(06:27):
Across the country, caregiversare organizing, they're
demanding more inclusivepost-secondary programs.
Accessible job training andadult focused autism resources.
Micro businesses are sproutingfrom kitchen tables, art
studios, soap making ventures,online stores, creative
solutions, sparked not bysystems, but by love and
(06:48):
necessity.
Support groups, both virtual andlocal are growing stronger.
Parents are linking arms sharingtips, providers and
encouragement.
And some states are expandingwaiver programs or launching
pilot initiatives aimed atadulthood because advocates
parents like you wouldn't stopshowing up.
So no, the road after 22 isn'tsmooth, but it's not the end.
(07:12):
It's a new beginning.
With the right support communityand willingness to fight
forward, we can build betterdays for our loved ones.
We pay for a private coach outof pocket.
Michelle tells her neighbor justto help Sean navigate workplace
stuff, tone of voice, readinghis body language.
It's not cheap.
(07:35):
She adds, he doesn't havefriends, not real ones.
He's lonely and that's the othertruth.
Rarely spoken.
Higher functioning adults withautism often live in an
invisible limbo, too capable forfull-time care, but not
supported enough to thriveindependently.
Back at the Satler home, Karenspends her evening on the phone.
(07:58):
She calls adult day programs.
They're full, she callscommunity resource centers.
They refer her to anotheragency.
That agency is no longeraccepting clients.
One night she's transferred sixtimes.
She writes in her journal,there's no bridge, just the
edge.
(08:18):
A few months after Greg agesout, Karen gets a call.
It's from Maya.
Maya's at college now doingwell, but she's worried.
Mom, are you okay?
She ask Karen Hesitates.
She doesn't wanna burden Maya,but she's not okay.
She's home all day with Greg.
He's regressed.
(08:39):
He misses the rhythm of school.
He paces, he hits himself, helashes out.
And Karen, well, Karen's lostherself.
I miss having coffee alone.
She confesses.
Daniel picks up extra shifts,not because they need the money,
but because he doesn't know whatto do at home anymore, they're
(08:59):
stuck.
One evening, Karen attends avirtual support group for
parents.
Of adults with disabilities.
A mother in the group sayssomething that sticks with her.
We spend so long fighting forour kids in school.
No one tells us the next fightis even harder.
But there's another piece wedon't talk about enough.
(09:21):
The parents are aging too.
They've already spent twodecades advocating, coordinating
therapies, managing behaviors,and holding their families
together by the time their childis out of school.
Many parents are in their latefifties, sixties, some of them
are even older, exhausted,burned out and facing their own
health issues, but the systemreally ask how they're doing.
(09:45):
There's no aging out support forcaregivers.
Just more paperwork, morewaiting, more silent sacrifice.
They aren't just parentinganymore.
They're lifting adult bodies,managing medications, and
navigating systems with evenless help than before.
For many, it's not sustainable,but it's their reality.
(10:07):
I, one morning, Greg is calm.
Karen decides to take him for adrive.
They end up at the lake, sheparks and they sit in silence.
Greg stares at the water.
He hums softly.
Karen puts a hand on his knee.
Let's figure this out.
She says more to herself than tohim That week, she starts a
(10:30):
spreadsheet, names, numbers,notes.
She organizes every agency she'scontacted.
She highlights the ones whopromise to call back, and then
she does something new.
She writes a letter to her staterepresentative.
She shares her story, Greg'sstory, and she ends it with
(10:50):
this.
We are not asking for luxury,we're asking for structure, for
care, for continuity.
This doesn't end at 22.
What you can do while you wait.
Here's some advice for familiesafter aging out or while on the
(11:12):
Medicaid waiver wait list.
When school ends, the servicesfeel out of reach.
It can feel like your loved oneand your entire family has been
left in limbo.
But there are things you can dowhile you wait that can make a
meaningful difference.
One, you can create a dailyroutine.
Structure is the most powerfultools one can offer.
(11:33):
Create a visual or writtenschedule with wake up times
meals, hygiene routines,learning time, physical
activity, and free time.
Predictability can reduceanxiety and improve behavior.
Two, focus on life skills.
Use this time to teach orreinforce important functional
skills.
(11:54):
Think.
Making simple meals, doinglaundry, handling money, either
real or pretend personalhygiene, taking medications.
These small wins.
Build confidence andindependence.
Three, document everything.
Keep a simple binder or adigital folder with progress
notes, medical visits,communication with agencies.
(12:18):
Examples of your child's needsvideos can also help.
This documentation can supportyour case when applying for
services or appealing wait listdecisions.
Four.
Build a circle of support.
Don't wait for officialservices.
To begin connecting, look forcaregiver support groups.
Ask if the local, high school orcollege offers peer buddy
(12:40):
programs.
Join online communities in yourstate focused on waivers and
disability services.
Five, explore volunteer orinclusive community
opportunities.
Look for safe, supportive placesthat offer engagement.
Libraries, community centers,churches or synagogues With
(13:00):
inclusion programs, evenoccasional outings can make a
huge difference.
Six, learn The system isfrustrating, but knowledge is
power.
Learn how your state's waiversystem works.
Find out who is your regionalcoordinator, what the priorities
are for service allocation, howto submit updates or letters of
(13:22):
need.
This helps you be persistent andstrategic.
Seven, and this is the mostimportant one.
Don't forget you, your wellbeingis essential.
Look for moments of rest, evenbrief ones.
Talk to your doctor aboutcaregiver burnout.
Tap into respite resources, eveninformal ones from friends and
(13:44):
families.
Still fighting for services.
Don't forget to take care ofyourself too The take care time.
Resite Box is curated forcaregivers just like you.
Full of comfort items,motivation and reminders that
(14:05):
you matter too.
Learn more at takecaretime.comnext time on the spectrum.
We hear it all the time.
You can't pour from an emptycup.
But what if there's no way torefill it?
What if you're so deep indemands of caregiving that you
(14:26):
don't even notice your ownwarning signs?
In our next episode of theSpectrum, we shine a light on
the physical and emotional tollof long-term caregiving,
especially.
When there's no support in sightfor Karen Sadler, it all came to
a head one ordinary afternoon.
She was standing at the sinkwashing a bowl when her vision
(14:47):
blurred and her legs gave out.
It wasn't a stroke or a heartattack.
It was exhaustion, dehydrated,sleep, deprived, running on
fumes, and she hadn't been tothe doctor in over three years.
This episode explores howcaregivers like Karen.
So focused on keeping theirchildren afloat, can find
themselves drowning.
(15:08):
We'll talk about the silentsuffering.
So many endure the ripple effecton families, and most
importantly, why building arespite plan isn't a luxury,
it's a necessity.
Years of relenting caregivinghad caught up with her, and
still she had to get up and takecare of Greg.
This episode is about the quietcrisis happening behind closed
(15:30):
doors.
It's about the fact that respiteisn't selfish, it's survival,
and we'll talk about whatcreating a realistic plan for
the rest looks like, especiallywhen your child's care needs are
more than most people canimagine, because for some
caregivers, rest isn't a want.
It's a lifeline.
(15:50):
What's it like to grow up in theshadow of a diagnosis?
To love your sibling deeply, butsometimes feel invisible.
In Episode seven.
We hear from someone who knowsthat role firsthand.
He's not just a brother, he's aprotector, an advocate, and a
collegal guardian.
But before any of that, he wasjust a kid trying to understand
(16:12):
why life in his house wasdifferent.
In episode Seven.
We sit down for a raw andheartfelt conversation with the
brother.
He shares what he witnessed andwhat he carried and what he
wishes.
More people understood aboutsiblings of those with profound
autism.
It's honest, emotional, and longoverdue.
(16:34):
Your Story matters.
Let's tell it together.
Do you have a story aboutcaregiving, sibling dynamics, or
navigating a broken system?
Maybe you're a parent stillwaiting for services, a sibling
who's seen it all.
A former professional who knowswhat's happening behind closed
doors.
Whatever your experience, you'renot alone and you don't have to
carry it alone either.
(16:55):
I'm inviting you to be a part oftake care time.
The tales and exhales ofcaregivers.
If you've lived it, felt it, orfought through it, we wanna hear
from you.
Reach out atpodcast@takecaretime.com.
Let's talk about what reallyhappens in the world of
caregiving, and let's do it withcompassion, honesty, and maybe a
(17:15):
little humor and suspensebecause your voice could be the
one someone else needs to hear.
Please note that this episodefeatures reenactments and
dramatized details.
While in most cases the exactverbatim dialogue may not be
known.
All dramatizations are groundedin thorough research and crafted
(17:35):
to honor the stories shared torespect the privacy and
confidentiality of theindividuals involved names, and
some identifying details havebeen changed.
Until next week, take care.