A Personal and Professional Perspective with Beyond the Spectrum’s Executive Director Lora Carpenter
February 1, 2024 • 32 mins
In this episode, we are speaking with Lora Carpenter, Executive Director of Beyond the Spectrum. Lora provides her perspective on being a parent of a special needs child, information she wishes she knew before, and how she uses her experience as a parent to inform her work as the Executive Director.
Takeaways:
10:12 - Don't panic, development does not stop at a young age.
11:53 - Celebrate the small things, Success looks different for every student
12:59 - Everything won’t always be perfect, and that’s okay
23:46 - No two individuals with Autism are the same
Timestamps:
00:00 - Lora Carpenter, Executive Director and Parent
03:30 - How have resources and interventions changed over time?
08:05 - What would you tell your past self with the information you have now?
12:45 - What misconceptions should families be aware of?
16:16 - What should someone consider when deciding a school for their student?
18:20 - What has been the most fulfilling project for you?
22:35 - What advice would you give to parents and caregivers?
25:00 - What advice would you give to families with neurotypical siblings?
29:50 - Closing advice
Join us every month for a new episode of Helping Families Go Beyond. Visit beyondthespectrum.org for more information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome to the Helping Families
Go Beyond the podcast
by Beyond the Spectrum.
I'm your host, Loryn Carpenter.
And today
I'm going to be sitting down
and talking with Lora Carpenter,
who's my mom,
and she's the executive director
for Beyond the Spectrum.
I'm just going to be asking her
some questions
about what it's been like raising
my brother Scotty.
I'm also going to be asking her
(00:20):
about how her role
as an executive director
has been shaped by being a parent
of a special needs student.
Without further ado.
Here's Lora Carpenter.
All right.
So I am here this morning
with Lora Carpenter,
our executive director, and also my mom.
And I am very excited
to sit down with her
as if I don't every day,
but just kind of
(00:40):
have her share her experience
as executive director
and as a parent of my brother Scotty.
And so Lora, my mom,
thank you for
taking the time to do this today.
If you could just kind of explain
what it's like
being the executive director
and your role as a parent
and as a leader for Beyond the Spectrum.
(01:00):
I can try and do that.
Thank you for having me. I appreciate it.
Daughter and Loryn,
so thank you for having me.
And I think, you know, my role
at Beyond on
the Spectrum
is to be the executive director.
That's the formal title of what I do.
And so that's interacting daily
with parents and students
and teachers in our clinic and basically
(01:23):
wearing a lot of hats every day,
hopefully successfully changing them out
as I need to.
And
in terms of what,
I also wear that parent hat
because Scotty being a student
that's enrolled here,
I think it comes in handy
as my role as the executive director,
(01:43):
because I think I can understand parents
in a way
and hear what they're saying
in a way that possibly children, people
that have not experienced a child
with a disability don't quite understand.
So it's very important to me
because of that
that Beyond the Spectrum is always
(02:04):
a nonjudgmental.
It's a safe place to fall for families.
It is a place where you can come
and have open, honest communication and
express your concerns and your worries
and your celebrations
of what might be the smallest thing.
But it's huge and we get that.
And so
I think it entails wearing a lot of hats
(02:24):
including the parent had been
hopefully they all played together
and to to coordinate
what's best for the school.
Yeah. Yeah.
And we can see that every day
just with
how the parents come in
and how they feel comfortable
with dropping their student off.
Yeah, I think, you know,
we want to be that place for parents.
If, if the shoes didn't
come on this morning,
(02:45):
that's totally fine. If.
Yeah, if we're in our pajamas.
Come on in. In your pajamas.
That is fine.
You know,
we don't worry
if they feel like they're late
and, you know,
there's nothing like getting that
special needs child ready in the morning.
And so we understand that it's
okay to be late.
It's okay to be in your pajamas.
It's just okay.
(03:05):
We've all been there.
And I just think it does help parents
when they realize
you do understand me, you do hear me.
And
and so
we just want them to feel comfortable
coming as they are at any time. Yeah.
And I know just from watching you
with Scotty growing up,
just that experience raising him
and how that has changed over
(03:26):
time,
can you kind of explain
what the journey was like for you
and how how it has changed
to where it is today
with resources
that are available for students now?
Any kind of interventions
that are available now for them
that maybe weren't available
when you were raising Scotty or. Sure.
Well, you know, we were we were kind of a
(03:47):
Scotty was kind
of a ahead of this tsunami
wave of autism diagnoses.
He was one of the very first
that was coming
when the numbers were rising.
We were among that because,
you know, he's
getting ready to turn 27 this week.
And so we were doing this 25 years ago,
and autism was just not well known.
It was
(04:08):
it was a course
that a lot of doctors
had studied in college
or in their graduate programs, I think.
So there was definitely
we didn't have the resources
that are out there today.
I'm so happy
that parents can now go to doctors
and have open, honest
conversations about,
you know, we're missing these milestones.
(04:28):
Here's some you know, here's
what I'm seeing, here's
what we're worried about.
And doctors,
I think this generation of doctor
is hopefully
more open to those kinds of things back.
And, you know,
when we were going through this, I was
I was crazy.
And, you know,
it was a lot of complications
with doctors trying to get guidance.
And, you know,
if we were trying to do any special diets
(04:49):
or anything like that,
there was no such thing as gluten
free back then,
if you can believe that or not,
there was no gluten free.
You know,
I'd order bread from Indiana
and chocolate from Illinois.
And it was
it was a really a full time job
to try and navigate
this this new diagnosis.
I can tell you that
I think I probably cried myself
(05:10):
to sleep every night
for about three years.
It is a very dark time.
And I think it's important
that families
realize that it's okay to be sad.
It's okay to have those feelings,
because I think it's very important
to go through the process of
maybe mourning
(05:31):
a life
that you thought you were going to have.
You know,
you were expecting a particular life
to be coming your way
when you had this child.
And I think it's very important
that you come to terms with, okay,
you know,
now we are going to be on another path
in terms of we're not visiting
(05:51):
this life that we thought.
But I think it's healthier for the family
and for the child
if if learning to come to terms with
who will your new family,
what it's going to look like. Right.
Yeah, that's important.
But it's it's a
it's a really difficult time.
There's no way around it.
Your searching for answers.
(06:11):
You hope every intervention
is going to make
all the difference in the world.
And you know, all you want
is what's best for that child.
And you feel sad and guilty and
all of these emotions all the time.
And, you know,
and then with that comes,
then you have another child.
And so
I think parents
(06:32):
sometimes experience
kind of the sibling guilt
because you realize this one child
kind of takes a lot of your time
and attention and energy.
And so you have the sibling
that's now being raised alongside
this special needs person.
And thank goodness we had you
you were the light of my life.
And you are my joy and absolute,
(06:53):
you know, have been a joy.
But I know that it's been a
you've been tasked
with some really particular
responsibilities
growing up with this
special needs brother.
I think it's
definitely changed who you are
and who you will become
really in a lot of positive ways.
But it definitely sets
everybody's course in the family.
(07:14):
I think when you
when you have a special
needs family member for sure.
Yeah. As definitely.
Because even when we have people
that come in here for the first time,
they're a little
not used to seeing students
at this capacity.
And so I think for me
just growing up, it's just been natural,
as has been a normal day.
And so I wouldn't
(07:35):
change that for anything.
I mean, I wouldn't.
If it is a different perspective on life,
I realized the other day
I was talking to one of our young men
in the back
and celebrating something with him.
And and I
it took me till that evening
and I thought I had this
entire extended conversation
with this young man.
And I completely forgot
that he was a person with disabilities.
Yeah, I didn't even see him as that.
(07:56):
I didn't even see him
as having a disability.
And so I think it's interesting
when you get to that point
where you just don't even
you don't even see it anymore. Right?
Is there anything
when you were on that journey,
is there anything that you wish
you would have learned
or information that you wish
you would have had during that time?
Or is there anything
that you would tell yourself now,
(08:17):
now that you've been through it
raising Scotty,
what would you tell yourself now? Wow,
Let I know that
there's definitely,
you know, for parents
that are going through it,
I think it's important
for them to realize the amount.
The parent has so many rights
when they're working
within the school systems
and when they're working
within the medical systems.
(08:38):
And I think we can become
very intimidated by the processes
that we're asked
to go through to gain services
for our children.
IEP services.
You know,
you come in
and you sit down
around the table of 12 professionals
and you and so it's very intimidating
and your rights equal
all 12 of those people.
(08:59):
And so
just realizing that it is okay
to fight for your child
and that sometimes
always do your own research
because sometimes
people may provide you with
just enough information
that they're allowed
or that behooves them too.
I don't mean to sound cynical,
but behooves them to provide for you.
(09:20):
And maybe there are services
out there or things
that you could be utilizing
for your child
that you wouldn't know otherwise.
I think a lot of people don't know
about the med waiver dollars
that are available.
SSI benefits
you can apply for so much earlier
than people understand.
And with those services comes so many
respite aspects for families
(09:42):
that are important.
We're really trying
to educate our families
to apply
for all of those necessary services.
Yeah, because there's so many processes,
it seems like,
and so many of them are so laborious.
So salute the jump through signatures.
DEADLINE Absolutely.
And even learn that
(10:03):
working on the hive
on our Adult Day program,
just all of the
requirements that are needed
to even provide services.
Right? Exactly.
And it
and to go back to your question,
maybe what would I have told
myself years ago?
I think
at the time when I was going through it,
I really thought I was on this time clock
(10:24):
and that at a certain age,
all of the development,
all of our growth
opportunities were done
like but you're kind of told
by the age of five or six,
this is who you're going to have.
And I have just found that to be
completely the opposite,
because I still see Scotty at 26 and 27
gaining skills, gaining
language, gaining independence,
(10:46):
having more
in-depth conversations with me
in terms of so that wasn't true.
And I was in such a blind panic
to accomplish everything.
By the time he turned five,
I couldn't think of anything else.
And it's really they continue to learn.
They continue to mature.
And I think it's important
for extended family members
(11:07):
and for family members,
even if you may be working with somebody
with a disability who is nonverbal or non
conversational,
I think it's really important
to understand that they
they understand
everything that you're saying
and they understand your they gather
your emotions, they gather
(11:27):
they're very astute at reading a room
and reading other human beings.
And I just think it's important
that we all realize
that they may not have
a lot of speech capacity,
but they do have a full capacity
of love and understanding.
And they're their progress
isn't as linear.
It's exactly always they do that
(11:48):
every day with the students.
You're always growing,
always doing your splintered.
You may do really well in one area
and another area
could drop off for a little bit
and then it comes back or two steps
forward or,
you know, all of a sudden
something they couldn't master is
just like they've always had it.
So it's
celebrating the small
things is really, really important. Yeah.
(12:09):
And that's
what I've always liked here,
that how we define success in that way
and success
looks different for every single student,
which I think is always rewarding to see.
Yup, exactly.
It's, you know,
we throw a party for somebody
that learns to tie their shoes,
you know, that's huge.
That's a huge life skill.
If you can't tie your shoes,
you know that that's a huge life skill.
(12:30):
And so we throw little shooting parties
when somebody learns to tie their shoes
and it's just
the little things, you know?
But they're huge to the families,
they're huge to the parents.
And so it's it's equally big for us.
Yeah.
And so when we see success in that way,
do you think that there are any other
kind of misconceptions
about raising a child
(12:51):
with autism
or a disability
or any other misconceptions
that families might have
if they've not experienced that?
I may go the other way with that one.
In terms of
I think it's a lot harder than it looks.
Yes, I think it is much harder.
(13:12):
Raising a child was,
but I'm not afraid to say that
because it's hard and
it's we always want to look
as close to perfect as we can.
We always want to be strong.
We always want to for it to appear
like we have everything together.
And that was very, very important to me
as a person.
Before I had Scotty,
that everything was perfect.
(13:32):
Everything went the way
it was supposed to.
There was a life plan.
This is what was happening.
And, you know, it's that old adage,
you know,
life laughs at you
while you're busy making plans.
Because I had to.
You know,
it makes you incredibly vulnerable
and it makes you
just realize other things
(13:52):
that are actually important
that you never even knew about before.
You never realized.
But I think people should realize it
is really,
really difficult to raise
a special needs child.
It's the and I hear it.
I hear it and I see it.
And we have amazing parents
in our school
and grandparents
who are raising these children
(14:15):
and doing an amazing job.
And it is so hard,
you know, I mean, and the vigilance
and the worry
and the accommodations
and the lack of sleep and, you know, it's
I think it's something to be appreciated
because everybody's doing their best,
you know, And that's why we try.
(14:35):
We don't want to judge anybody
because everybody is simply doing
their best on that day.
And it changes minute to minute.
You know,
that child's
mood, that child's needs change
minute to minute.
You know, I don't think it's a
I don't think it's a coincidence
that the divorce rate is near
90% for special needs parents.
You know,
I mean, that's that's a reality of life.
(14:57):
You know, I'm lucky, dad, and I've been,
I think 34 years this year, been married.
So, you know,
very fortunate
to have that support
network in the house.
And but that is definitely a rarity
that most families do not have
with special needs kids, right?
Yeah. Yeah.
So I think it's,
you know,
I think misconceptions, it's
probably harder than it looks.
(15:18):
Yeah.
Because I just know
from when parents come in in the mornings
and they'll be like,
we barely got out the door today
and it's like, Hey, you're here,
you're here, you have shoes. That's great
for that day.
So exactly.
You're here, you're here,
and that's all that matters
and will make all the rest of it work.
And I can see your point too,
where you have parents
(15:39):
that that same feeling
of needing to look perfect
and needing to be put together.
And they come in so exasperated.
It's like, No, it's okay.
You got your student here.
They're wearing clothes.
They they had breakfast.
That's that's golden.
And you're you're ahead of that.
Most of us,
you know, you're ahead of most of us.
But I think people can
if they realize
that by actually
(16:00):
being vulnerable a little bit, a lot more
things come in
at that point
when you allow yourself to be vulnerable.
The world can step in
and help in ways that,
you know, really make a difference.
And and it's okay. It's all okay.
We're all going to be okay.
And so with that mentality
that we have here,
is that something that you think
someone should consider
(16:21):
when they're deciding on a school
for their student?
Or how would
how should someone go about deciding
if Beyond the Spectrum
is the good fit for their student?
You know, and I think there
are a lot of great programs
that are out there,
and we're all unique
in some way or another.
And I think it's important
that I think really
one of the most important
(16:41):
is that you feel comfortable
when you come in the door
and that you feel welcomed and warmth.
And you
I always when I go to a place,
I like to look at the interaction
between the teachers and the students.
How comfortable are
these students in their setting?
Are they,
you know, happy and engaged
and are the teachers happy and engaged?
And, you know,
(17:02):
I think
some people have toward us
and they're like,
you're a little too small, or now it's
you're a little too big or,
you know, we have to fit everybody.
It's changes for every parent.
But I think if their goal is, you know,
that's why
we try to
have a lot of open
communication
and be an understanding source of
(17:22):
of information for families.
But I think
just finding your own comfort level
and it was always important to me
and I like to see
the reaction of the student
if they're happy to come
to school in the morning.
You know,
if they're happy to get out of the car
and they're welcomed in the lobby,
and then maybe we've had the kids,
you know, that
didn't want to come to school initially,
(17:43):
and now they sign up for aftercare
and they cry when they have to go home,
you know?
So you love to see that.
It means they feel loved
and welcomed in their space.
And I think those are really important
indicators.
How you feel
and how your child feels
about being in the space.
I think another thing here
is we're always trying
to improve that process
too, of having families come in.
(18:05):
Because you were just
in a meeting this morning
about how to improve that intake process
where we have families come in and tour
and do the assessments to make sure
that we're meeting all of their needs.
And so when we have those projects,
when we have all those opportunities
for growth here,
what do you think has been
maybe the most fulfilling project
(18:27):
for growth here?
I think I think always a favorite project
for me
is if I'm probably
because of the parent hat,
is because I'm finding a way to provide
more information and support to a family
to help
how that family interacts as a unit
(18:47):
to broaden their world
so that they can go out to dinner,
they can go to the park
that, you know, we have a lot of families
afraid to take their child out
because of the world
or how they're going to do.
And I think anything
that we've ever input to help
build up the parents,
you know, give them information,
help that family in some way,
(19:08):
those are my favorite projects
because I feel like
I'm giving back directly
to the people that really, truly need it.
I mean, we've had so many great growth
initiatives between
opening the second ABA
therapy clinic in Port Charlotte
and, of course, opening
the Adult Day program.
I think that's so meaningful
just because services are so lacking
(19:29):
in this community, we're just overrun.
There's just not enough.
So providing really meaningful services
for adults
I think
will be a unique aspect of that program.
And
so I don't feel like
I work a day in my life really,
because this is such a passion for me
to be here with these kids.
You know,
the kids are my bright spot of the day.
(19:50):
They're my favorite thing.
And everything else
I do is to
make the world better for them.
So as long as I'm doing that,
I'm doing my favorite thing.
I feel the same way.
If I'm doing something
actually work related.
Mike, I'm going to take a break
and just go hang out
with the kids for a minute and.
Then it's all good. Exactly.
(20:11):
Because they make it all worthwhile.
I mean,
they are my favorite part of the day,
how their minds work,
the conversations that you end up
having that you never expected to have.
Yeah.
And, you know,
they take a right corner,
right turn very quickly sometimes.
And, you know, that's
what makes them
enjoyable, you know,
But they're the best part
in their families
getting to know the families
(20:31):
and everybody has such a unique story.
You know,
everybody has their challenges
and situations that they come from.
And we just want to be that place
to provide support and information.
I think that's the most important thing
for me, guidance and support.
And you do a great job of that.
Even some of our program
directors just said that this morning
about just how you're able
(20:52):
to relate to families and parents
and caregivers
in a way
that maybe
other types of leaders
might not be able to
because you have all that experience
and also seeing it
firsthand growing up,
just the patience that you have.
And you can
I can see that
I can see that
bleed over in everything you do
every day.
(21:13):
And I mean getting to work with you.
I see that.
And I'm like,
I don't know how she does it.
I, I really, I don't know.
But yeah, I see that every day.
Well, yeah, I mean, it's
because I want it.
You know,
I'm, I'm passionate
about providing
as much as we can for our staff
(21:33):
so that they're in the best
possible place to provide
more for the students.
My job is to support the directors
and the staff
so that they can
then go forward
and support students and the families.
And I always enjoy that role, you know,
But the patience is a huge
I mean, that's like
I mean, you know, we can be honest.
I mean, this morning at the house was was
(21:55):
you know, Scotty decided to be,
you know, whatever
he was on a tear this morning
and what why what happened?
You know,
and we all just had to deal with
whatever that was,
you know, that was gone.
And so I think a lot of times
we don't realize
what families have been through.
By the time we see them in the morning.
We truly have no idea of
(22:16):
maybe what they've already dealt
with that morning.
You know, just to get to school is like.
Right.
Takes everything out of you.
Yeah, So I do I think
it's definitely No, no.
Two moments are the same. Exactly.
And with that point,
what would be some advice
that you would give to parents
(22:38):
and caregivers,
some important steps
maybe that they should take
when they're doing their daily activities
as they're
having to think about these new processes
as they grow up?
Yeah, I think
I think one of the biggest lessons
that I learned
when when I took this role at Beyond
the Spectrum was I was very,
very confident
in my knowledge of autism parenting.
(23:01):
And so I because I had lived it,
you know, for 20, 20 years.
And I realized
pretty quickly
after I got here that I knew my autism,
but I didn't know everybody else's autism
in the building because no two are alike.
You can find trends,
you can find similarities,
(23:22):
you can find
things that they'll respond to.
But genuinely,
every person is an individual
with their own sets of needs and
and behaviors and likes and dislikes.
And and I
my eyes were opened up
to a whole new world
of things that I didn't even realize,
(23:42):
you know, families were working with
and living with on a daily basis. And
so I think it's just important to realize
that no two individuals with autism
are the same.
I think that's important for caregivers.
And in a weird,
weird, more technical point
is that processing time
(24:02):
for communication.
I think our guys and our girls
have a slower processing time,
and so allowing them
the time to process the information
after you speak to them
really improves the chances
of communication.
Simply repeating questions to them.
Rapid Fire are not.
(24:23):
It's going to escalate
anything that you have going on.
That's a it's overwhelming.
Yeah.
And I think it's just, you know,
finding a means for them to communicate,
I think is important.
If you can find
it doesn't have to be verbal,
it can be written,
it can be typed,
it can be packs,
it can be whatever
communication, but
so that they can have
(24:44):
their wants and needs met.
I think is really important
for caregivers to realize
that they are individuals,
that they're very,
you know,
whole whole minded,
whole spiritual people
that have needs and,
you know, have their own personalities.
And so it's important to remember that.
Is there any advice
you'd give to families that have siblings
(25:07):
that have like neurotypical siblings?
You know, that's that's tough.
I, I know what I did.
And you do have to be the one to tell me
if it was a success or not.
You know,
you'd be the judge
and jury on that because, you know, we
your dad
and I wanted
you to have your own life experiences.
(25:29):
We knew that you had this brother,
but we also wanted you
to be an individual
that had all of your own experiences.
And we never wanted you
to be over responsible for his care.
We didn't want there
to ever be resentment
from between the siblings
because all of this is being put on me
because I have this
special needs sibling.
(25:50):
So I think I started with you way back.
As far as I can remember that
we always gave you choices
and it was a very judgment free choice.
If it was an achievement of yours,
if it was a trip for you, for school,
if it was something
that was all about you,
that we would always give you a choice.
Who do you want to go with you this time?
Mom, Mom and Dad. Mom, Dad and Scotty.
(26:11):
Who do you want to go?
And you got to pick
and you And and once you said it,
awesome. That's who's going.
There was no
you know, it was always judgment free
because you needed
to have your moments to you know,
it was important to me that you had your
your time to be you, because I know how
(26:33):
how different it is to have that sibling.
So I don't know if that worked or not.
But I think spending. You know.
Special times with that sibling,
I think it's important because, yeah,
I know
that you've probably gone
through a lot of things.
I think a sibling looks at a situation
goes, I can't ask that of them.
They're already dealing with this,
(26:54):
this and this.
I can't put this on them too.
And you know, and that as a parent,
then you feel, you know,
a real responsibility
about that
because we need to be there
for you as well for that other sibling.
So I think special time with that
sibling is always fun.
You know,
make sure they've got their own
things, their own lives.
Let them have their friends,
(27:15):
do whatever you can
to protect their time
and protect their identity.
Yeah,
I think you did a great job of that.
You know, on top of on top
of taking care of Scottie
and finding the best interventions
for him.
Well, and
it's one of those things
that you navigate and you think, Well,
I hope that I'm doing this right,
but I don't know
it feels right to me right now.
(27:35):
But, you know,
we always look back on things and think,
you know, I wish I would have.
Every parent does.
That because there's not really
like a framework
to do based on the best of choices.
And every sibling
relationship is different.
You know, we've seen that
every sibling relationship is different
where So that could work
(27:55):
for some families and not for others.
But, you know, we realized
pretty quickly on that
Scotty loves you so much
he would do anything for you.
That's just anything for you.
And so more
so than therapists
or moms or dads or anything,
he takes care of you.
So you know,
we know how he feels about you
in terms of the sibling relationship
(28:16):
he does.
And for any of the listeners,
Scotty is very helpful.
My brother, he's a very helpful guy
and so aggressively helpful,
even if you don't exactly want the help
you get it.
And so but so he helps me get in the car.
He helps me put my seatbelt on.
(28:37):
He takes my purse from me.
I mean, very chivalrous.
So I mean, I've kind of grown up
a little spoiled.
He'll open the car door for me,
and so when it doesn't open, I'm like,
Why isn't the door opening at
the Scotty's job?
So we came home one day.
Literally the two of us were in the car
and you're just sitting there.
And I was like, What do you do?
And you're like,
I got to open my own car door.
(28:58):
Yeah. So used to the brother doing it.
You were just sitting there
and I'm like, What? What you do? And
and you're like,
I've got to open my car door.
Yeah, yeah.
But yeah, Scott is just he's
my best friend, really.
I mean, yeah, he helps me.
He helps me so much. It's.
It's, it's, yeah,
he puts all your things away.
What was it?
(29:18):
We were gone one time
and he wasn't there
to put all your things away.
And you lost everything.
Yeah.
Because you were so used to him
putting all your things away
in the same spot
every time you lost
everything that week that he was gone,
you couldn't find your keys,
you couldn't find your purse.
It was like, Where's my wallet?
It should be on the floor beside my bed.
And that's not there.
(29:39):
Yeah. Yeah.
You were a little lost.
You're like, I can't find anything.
He's dependable, that one.
He's dependable.
Yeah.
And so
with that,
unless you have any closing advice
or comments
that you'd like to share with families.
I think that, you know,
just realizing that you are not alone
(30:00):
in this journey,
it's not one that you planned, It's
not one that you're probably packed for.
But you'll
you'll have to just get a new suitcase
and put some tools in it.
And I have met some of the most
amazing human beings in this world.
And of disabilities and,
(30:21):
you know, and groups,
you know, really groups
that have formed around us
like the Patterson Foundation
and No Marginal Mission
and the Quarterly group and people
that have
formed themselves
to support nonprofits who
support families.
So there are a lot of great people
out there and look for those people,
find your people,
(30:42):
you know, that make you feel comfortable
and make you your entire family
feel welcome and spend your time there.
Spend your time where you're comfortable.
Every day is different
and every day you're you're
you're doing good enough.
Perfect.
Well,
thank you for taking the time to do this
and for explaining your role
as executive director and as a parent,
(31:03):
and for teaching us about that acceptance
and trusting everything
and reassuring us
about all the resources
that are available.
Yeah, well,
I appreciate the opportunity
to to be on your show and, you know,
I'll I'll say I was back
I was on it back
when, you know,
and was just I'm really excited about it.
(31:25):
I think it's a
I think it's a great opportunity
to reach a new audience.
And I'm just excited for you
that you're doing this.
I think it's really cool.
Thank you.
I'm excited to talk to other people
in the community
and parents and siblings as well, So.
I'm excited people out there.
Well, thank you.
Thank you for hopping on today
and for talking to me.
I'll let you get back
(31:45):
to being an executive director
slash parent. Okay. Thank you.
Thank you so much
for joining us here today
and helping families
go beyond the podcast
by Beyond the Spectrum
for more resources or information,
visit our website at
Beyond the Spectrum.org.
Welcome to the Helping Families
Go Beyond the podcast
by Beyond the Spectrum.
I'm your host, Loryn Carpenter.
And today
I'm going to be sitting down
and talking with Lora Carpenter,
who's my mom,
and she's the executive director
for Beyond the Spectrum.
I'm just going to be asking her
some questions
about what it's been like raising
my brother Scotty.
I'm also going to be asking her
(00:20):
about how her role
as an executive director
has been shaped by being a parent
of a special needs student.
Without further ado.
Here's Lora Carpenter.
All right.
So I am here this morning
with Lora Carpenter,
our executive director, and also my mom.
And I am very excited
to sit down with her
as if I don't every day,
but just kind of
(00:40):
have her share her experience
as executive director
and as a parent of my brother Scotty.
And so Lora, my mom,
thank you for
taking the time to do this today.
If you could just kind of explain
what it's like
being the executive director
and your role as a parent
and as a leader for Beyond the Spectrum.
(01:00):
I can try and do that.
Thank you for having me. I appreciate it.
Daughter and Loryn,
so thank you for having me.
And I think, you know, my role
at Beyond on
the Spectrum
is to be the executive director.
That's the formal title of what I do.
And so that's interacting daily
with parents and students
and teachers in our clinic and basically
(01:23):
wearing a lot of hats every day,
hopefully successfully changing them out
as I need to.
And
in terms of what,
I also wear that parent hat
because Scotty being a student
that's enrolled here,
I think it comes in handy
as my role as the executive director,
(01:43):
because I think I can understand parents
in a way
and hear what they're saying
in a way that possibly children, people
that have not experienced a child
with a disability don't quite understand.
So it's very important to me
because of that
that Beyond the Spectrum is always
(02:04):
a nonjudgmental.
It's a safe place to fall for families.
It is a place where you can come
and have open, honest communication and
express your concerns and your worries
and your celebrations
of what might be the smallest thing.
But it's huge and we get that.
And so
I think it entails wearing a lot of hats
(02:24):
including the parent had been
hopefully they all played together
and to to coordinate
what's best for the school.
Yeah. Yeah.
And we can see that every day
just with
how the parents come in
and how they feel comfortable
with dropping their student off.
Yeah, I think, you know,
we want to be that place for parents.
If, if the shoes didn't
come on this morning,
(02:45):
that's totally fine. If.
Yeah, if we're in our pajamas.
Come on in. In your pajamas.
That is fine.
You know,
we don't worry
if they feel like they're late
and, you know,
there's nothing like getting that
special needs child ready in the morning.
And so we understand that it's
okay to be late.
It's okay to be in your pajamas.
It's just okay.
(03:05):
We've all been there.
And I just think it does help parents
when they realize
you do understand me, you do hear me.
And
and so
we just want them to feel comfortable
coming as they are at any time. Yeah.
And I know just from watching you
with Scotty growing up,
just that experience raising him
and how that has changed over
(03:26):
time,
can you kind of explain
what the journey was like for you
and how how it has changed
to where it is today
with resources
that are available for students now?
Any kind of interventions
that are available now for them
that maybe weren't available
when you were raising Scotty or. Sure.
Well, you know, we were we were kind of a
(03:47):
Scotty was kind
of a ahead of this tsunami
wave of autism diagnoses.
He was one of the very first
that was coming
when the numbers were rising.
We were among that because,
you know, he's
getting ready to turn 27 this week.
And so we were doing this 25 years ago,
and autism was just not well known.
It was
(04:08):
it was a course
that a lot of doctors
had studied in college
or in their graduate programs, I think.
So there was definitely
we didn't have the resources
that are out there today.
I'm so happy
that parents can now go to doctors
and have open, honest
conversations about,
you know, we're missing these milestones.
(04:28):
Here's some you know, here's
what I'm seeing, here's
what we're worried about.
And doctors,
I think this generation of doctor
is hopefully
more open to those kinds of things back.
And, you know,
when we were going through this, I was
I was crazy.
And, you know,
it was a lot of complications
with doctors trying to get guidance.
And, you know,
if we were trying to do any special diets
(04:49):
or anything like that,
there was no such thing as gluten
free back then,
if you can believe that or not,
there was no gluten free.
You know,
I'd order bread from Indiana
and chocolate from Illinois.
And it was
it was a really a full time job
to try and navigate
this this new diagnosis.
I can tell you that
I think I probably cried myself
(05:10):
to sleep every night
for about three years.
It is a very dark time.
And I think it's important
that families
realize that it's okay to be sad.
It's okay to have those feelings,
because I think it's very important
to go through the process of
maybe mourning
(05:31):
a life
that you thought you were going to have.
You know,
you were expecting a particular life
to be coming your way
when you had this child.
And I think it's very important
that you come to terms with, okay,
you know,
now we are going to be on another path
in terms of we're not visiting
(05:51):
this life that we thought.
But I think it's healthier for the family
and for the child
if if learning to come to terms with
who will your new family,
what it's going to look like. Right.
Yeah, that's important.
But it's it's a
it's a really difficult time.
There's no way around it.
Your searching for answers.
(06:11):
You hope every intervention
is going to make
all the difference in the world.
And you know, all you want
is what's best for that child.
And you feel sad and guilty and
all of these emotions all the time.
And, you know,
and then with that comes,
then you have another child.
And so
I think parents
(06:32):
sometimes experience
kind of the sibling guilt
because you realize this one child
kind of takes a lot of your time
and attention and energy.
And so you have the sibling
that's now being raised alongside
this special needs person.
And thank goodness we had you
you were the light of my life.
And you are my joy and absolute,
(06:53):
you know, have been a joy.
But I know that it's been a
you've been tasked
with some really particular
responsibilities
growing up with this
special needs brother.
I think it's
definitely changed who you are
and who you will become
really in a lot of positive ways.
But it definitely sets
everybody's course in the family.
(07:14):
I think when you
when you have a special
needs family member for sure.
Yeah. As definitely.
Because even when we have people
that come in here for the first time,
they're a little
not used to seeing students
at this capacity.
And so I think for me
just growing up, it's just been natural,
as has been a normal day.
And so I wouldn't
(07:35):
change that for anything.
I mean, I wouldn't.
If it is a different perspective on life,
I realized the other day
I was talking to one of our young men
in the back
and celebrating something with him.
And and I
it took me till that evening
and I thought I had this
entire extended conversation
with this young man.
And I completely forgot
that he was a person with disabilities.
Yeah, I didn't even see him as that.
(07:56):
I didn't even see him
as having a disability.
And so I think it's interesting
when you get to that point
where you just don't even
you don't even see it anymore. Right?
Is there anything
when you were on that journey,
is there anything that you wish
you would have learned
or information that you wish
you would have had during that time?
Or is there anything
that you would tell yourself now,
(08:17):
now that you've been through it
raising Scotty,
what would you tell yourself now? Wow,
Let I know that
there's definitely,
you know, for parents
that are going through it,
I think it's important
for them to realize the amount.
The parent has so many rights
when they're working
within the school systems
and when they're working
within the medical systems.
(08:38):
And I think we can become
very intimidated by the processes
that we're asked
to go through to gain services
for our children.
IEP services.
You know,
you come in
and you sit down
around the table of 12 professionals
and you and so it's very intimidating
and your rights equal
all 12 of those people.
(08:59):
And so
just realizing that it is okay
to fight for your child
and that sometimes
always do your own research
because sometimes
people may provide you with
just enough information
that they're allowed
or that behooves them too.
I don't mean to sound cynical,
but behooves them to provide for you.
(09:20):
And maybe there are services
out there or things
that you could be utilizing
for your child
that you wouldn't know otherwise.
I think a lot of people don't know
about the med waiver dollars
that are available.
SSI benefits
you can apply for so much earlier
than people understand.
And with those services comes so many
respite aspects for families
(09:42):
that are important.
We're really trying
to educate our families
to apply
for all of those necessary services.
Yeah, because there's so many processes,
it seems like,
and so many of them are so laborious.
So salute the jump through signatures.
DEADLINE Absolutely.
And even learn that
(10:03):
working on the hive
on our Adult Day program,
just all of the
requirements that are needed
to even provide services.
Right? Exactly.
And it
and to go back to your question,
maybe what would I have told
myself years ago?
I think
at the time when I was going through it,
I really thought I was on this time clock
(10:24):
and that at a certain age,
all of the development,
all of our growth
opportunities were done
like but you're kind of told
by the age of five or six,
this is who you're going to have.
And I have just found that to be
completely the opposite,
because I still see Scotty at 26 and 27
gaining skills, gaining
language, gaining independence,
(10:46):
having more
in-depth conversations with me
in terms of so that wasn't true.
And I was in such a blind panic
to accomplish everything.
By the time he turned five,
I couldn't think of anything else.
And it's really they continue to learn.
They continue to mature.
And I think it's important
for extended family members
(11:07):
and for family members,
even if you may be working with somebody
with a disability who is nonverbal or non
conversational,
I think it's really important
to understand that they
they understand
everything that you're saying
and they understand your they gather
your emotions, they gather
(11:27):
they're very astute at reading a room
and reading other human beings.
And I just think it's important
that we all realize
that they may not have
a lot of speech capacity,
but they do have a full capacity
of love and understanding.
And they're their progress
isn't as linear.
It's exactly always they do that
(11:48):
every day with the students.
You're always growing,
always doing your splintered.
You may do really well in one area
and another area
could drop off for a little bit
and then it comes back or two steps
forward or,
you know, all of a sudden
something they couldn't master is
just like they've always had it.
So it's
celebrating the small
things is really, really important. Yeah.
(12:09):
And that's
what I've always liked here,
that how we define success in that way
and success
looks different for every single student,
which I think is always rewarding to see.
Yup, exactly.
It's, you know,
we throw a party for somebody
that learns to tie their shoes,
you know, that's huge.
That's a huge life skill.
If you can't tie your shoes,
you know that that's a huge life skill.
(12:30):
And so we throw little shooting parties
when somebody learns to tie their shoes
and it's just
the little things, you know?
But they're huge to the families,
they're huge to the parents.
And so it's it's equally big for us.
Yeah.
And so when we see success in that way,
do you think that there are any other
kind of misconceptions
about raising a child
(12:51):
with autism
or a disability
or any other misconceptions
that families might have
if they've not experienced that?
I may go the other way with that one.
In terms of
I think it's a lot harder than it looks.
Yes, I think it is much harder.
(13:12):
Raising a child was,
but I'm not afraid to say that
because it's hard and
it's we always want to look
as close to perfect as we can.
We always want to be strong.
We always want to for it to appear
like we have everything together.
And that was very, very important to me
as a person.
Before I had Scotty,
that everything was perfect.
(13:32):
Everything went the way
it was supposed to.
There was a life plan.
This is what was happening.
And, you know, it's that old adage,
you know,
life laughs at you
while you're busy making plans.
Because I had to.
You know,
it makes you incredibly vulnerable
and it makes you
just realize other things
(13:52):
that are actually important
that you never even knew about before.
You never realized.
But I think people should realize it
is really,
really difficult to raise
a special needs child.
It's the and I hear it.
I hear it and I see it.
And we have amazing parents
in our school
and grandparents
who are raising these children
(14:15):
and doing an amazing job.
And it is so hard,
you know, I mean, and the vigilance
and the worry
and the accommodations
and the lack of sleep and, you know, it's
I think it's something to be appreciated
because everybody's doing their best,
you know, And that's why we try.
(14:35):
We don't want to judge anybody
because everybody is simply doing
their best on that day.
And it changes minute to minute.
You know,
that child's
mood, that child's needs change
minute to minute.
You know, I don't think it's a
I don't think it's a coincidence
that the divorce rate is near
90% for special needs parents.
You know,
I mean, that's that's a reality of life.
(14:57):
You know, I'm lucky, dad, and I've been,
I think 34 years this year, been married.
So, you know,
very fortunate
to have that support
network in the house.
And but that is definitely a rarity
that most families do not have
with special needs kids, right?
Yeah. Yeah.
So I think it's,
you know,
I think misconceptions, it's
probably harder than it looks.
(15:18):
Yeah.
Because I just know
from when parents come in in the mornings
and they'll be like,
we barely got out the door today
and it's like, Hey, you're here,
you're here, you have shoes. That's great
for that day.
So exactly.
You're here, you're here,
and that's all that matters
and will make all the rest of it work.
And I can see your point too,
where you have parents
(15:39):
that that same feeling
of needing to look perfect
and needing to be put together.
And they come in so exasperated.
It's like, No, it's okay.
You got your student here.
They're wearing clothes.
They they had breakfast.
That's that's golden.
And you're you're ahead of that.
Most of us,
you know, you're ahead of most of us.
But I think people can
if they realize
that by actually
(16:00):
being vulnerable a little bit, a lot more
things come in
at that point
when you allow yourself to be vulnerable.
The world can step in
and help in ways that,
you know, really make a difference.
And and it's okay. It's all okay.
We're all going to be okay.
And so with that mentality
that we have here,
is that something that you think
someone should consider
(16:21):
when they're deciding on a school
for their student?
Or how would
how should someone go about deciding
if Beyond the Spectrum
is the good fit for their student?
You know, and I think there
are a lot of great programs
that are out there,
and we're all unique
in some way or another.
And I think it's important
that I think really
one of the most important
(16:41):
is that you feel comfortable
when you come in the door
and that you feel welcomed and warmth.
And you
I always when I go to a place,
I like to look at the interaction
between the teachers and the students.
How comfortable are
these students in their setting?
Are they,
you know, happy and engaged
and are the teachers happy and engaged?
And, you know,
(17:02):
I think
some people have toward us
and they're like,
you're a little too small, or now it's
you're a little too big or,
you know, we have to fit everybody.
It's changes for every parent.
But I think if their goal is, you know,
that's why
we try to
have a lot of open
communication
and be an understanding source of
(17:22):
of information for families.
But I think
just finding your own comfort level
and it was always important to me
and I like to see
the reaction of the student
if they're happy to come
to school in the morning.
You know,
if they're happy to get out of the car
and they're welcomed in the lobby,
and then maybe we've had the kids,
you know, that
didn't want to come to school initially,
(17:43):
and now they sign up for aftercare
and they cry when they have to go home,
you know?
So you love to see that.
It means they feel loved
and welcomed in their space.
And I think those are really important
indicators.
How you feel
and how your child feels
about being in the space.
I think another thing here
is we're always trying
to improve that process
too, of having families come in.
(18:05):
Because you were just
in a meeting this morning
about how to improve that intake process
where we have families come in and tour
and do the assessments to make sure
that we're meeting all of their needs.
And so when we have those projects,
when we have all those opportunities
for growth here,
what do you think has been
maybe the most fulfilling project
(18:27):
for growth here?
I think I think always a favorite project
for me
is if I'm probably
because of the parent hat,
is because I'm finding a way to provide
more information and support to a family
to help
how that family interacts as a unit
(18:47):
to broaden their world
so that they can go out to dinner,
they can go to the park
that, you know, we have a lot of families
afraid to take their child out
because of the world
or how they're going to do.
And I think anything
that we've ever input to help
build up the parents,
you know, give them information,
help that family in some way,
(19:08):
those are my favorite projects
because I feel like
I'm giving back directly
to the people that really, truly need it.
I mean, we've had so many great growth
initiatives between
opening the second ABA
therapy clinic in Port Charlotte
and, of course, opening
the Adult Day program.
I think that's so meaningful
just because services are so lacking
(19:29):
in this community, we're just overrun.
There's just not enough.
So providing really meaningful services
for adults
I think
will be a unique aspect of that program.
And
so I don't feel like
I work a day in my life really,
because this is such a passion for me
to be here with these kids.
You know,
the kids are my bright spot of the day.
(19:50):
They're my favorite thing.
And everything else
I do is to
make the world better for them.
So as long as I'm doing that,
I'm doing my favorite thing.
I feel the same way.
If I'm doing something
actually work related.
Mike, I'm going to take a break
and just go hang out
with the kids for a minute and.
Then it's all good. Exactly.
(20:11):
Because they make it all worthwhile.
I mean,
they are my favorite part of the day,
how their minds work,
the conversations that you end up
having that you never expected to have.
Yeah.
And, you know,
they take a right corner,
right turn very quickly sometimes.
And, you know, that's
what makes them
enjoyable, you know,
But they're the best part
in their families
getting to know the families
(20:31):
and everybody has such a unique story.
You know,
everybody has their challenges
and situations that they come from.
And we just want to be that place
to provide support and information.
I think that's the most important thing
for me, guidance and support.
And you do a great job of that.
Even some of our program
directors just said that this morning
about just how you're able
(20:52):
to relate to families and parents
and caregivers
in a way
that maybe
other types of leaders
might not be able to
because you have all that experience
and also seeing it
firsthand growing up,
just the patience that you have.
And you can
I can see that
I can see that
bleed over in everything you do
every day.
(21:13):
And I mean getting to work with you.
I see that.
And I'm like,
I don't know how she does it.
I, I really, I don't know.
But yeah, I see that every day.
Well, yeah, I mean, it's
because I want it.
You know,
I'm, I'm passionate
about providing
as much as we can for our staff
(21:33):
so that they're in the best
possible place to provide
more for the students.
My job is to support the directors
and the staff
so that they can
then go forward
and support students and the families.
And I always enjoy that role, you know,
But the patience is a huge
I mean, that's like
I mean, you know, we can be honest.
I mean, this morning at the house was was
(21:55):
you know, Scotty decided to be,
you know, whatever
he was on a tear this morning
and what why what happened?
You know,
and we all just had to deal with
whatever that was,
you know, that was gone.
And so I think a lot of times
we don't realize
what families have been through.
By the time we see them in the morning.
We truly have no idea of
(22:16):
maybe what they've already dealt
with that morning.
You know, just to get to school is like.
Right.
Takes everything out of you.
Yeah, So I do I think
it's definitely No, no.
Two moments are the same. Exactly.
And with that point,
what would be some advice
that you would give to parents
(22:38):
and caregivers,
some important steps
maybe that they should take
when they're doing their daily activities
as they're
having to think about these new processes
as they grow up?
Yeah, I think
I think one of the biggest lessons
that I learned
when when I took this role at Beyond
the Spectrum was I was very,
very confident
in my knowledge of autism parenting.
(23:01):
And so I because I had lived it,
you know, for 20, 20 years.
And I realized
pretty quickly
after I got here that I knew my autism,
but I didn't know everybody else's autism
in the building because no two are alike.
You can find trends,
you can find similarities,
(23:22):
you can find
things that they'll respond to.
But genuinely,
every person is an individual
with their own sets of needs and
and behaviors and likes and dislikes.
And and I
my eyes were opened up
to a whole new world
of things that I didn't even realize,
(23:42):
you know, families were working with
and living with on a daily basis. And
so I think it's just important to realize
that no two individuals with autism
are the same.
I think that's important for caregivers.
And in a weird,
weird, more technical point
is that processing time
(24:02):
for communication.
I think our guys and our girls
have a slower processing time,
and so allowing them
the time to process the information
after you speak to them
really improves the chances
of communication.
Simply repeating questions to them.
Rapid Fire are not.
(24:23):
It's going to escalate
anything that you have going on.
That's a it's overwhelming.
Yeah.
And I think it's just, you know,
finding a means for them to communicate,
I think is important.
If you can find
it doesn't have to be verbal,
it can be written,
it can be typed,
it can be packs,
it can be whatever
communication, but
so that they can have
(24:44):
their wants and needs met.
I think is really important
for caregivers to realize
that they are individuals,
that they're very,
you know,
whole whole minded,
whole spiritual people
that have needs and,
you know, have their own personalities.
And so it's important to remember that.
Is there any advice
you'd give to families that have siblings
(25:07):
that have like neurotypical siblings?
You know, that's that's tough.
I, I know what I did.
And you do have to be the one to tell me
if it was a success or not.
You know,
you'd be the judge
and jury on that because, you know, we
your dad
and I wanted
you to have your own life experiences.
(25:29):
We knew that you had this brother,
but we also wanted you
to be an individual
that had all of your own experiences.
And we never wanted you
to be over responsible for his care.
We didn't want there
to ever be resentment
from between the siblings
because all of this is being put on me
because I have this
special needs sibling.
(25:50):
So I think I started with you way back.
As far as I can remember that
we always gave you choices
and it was a very judgment free choice.
If it was an achievement of yours,
if it was a trip for you, for school,
if it was something
that was all about you,
that we would always give you a choice.
Who do you want to go with you this time?
Mom, Mom and Dad. Mom, Dad and Scotty.
(26:11):
Who do you want to go?
And you got to pick
and you And and once you said it,
awesome. That's who's going.
There was no
you know, it was always judgment free
because you needed
to have your moments to you know,
it was important to me that you had your
your time to be you, because I know how
(26:33):
how different it is to have that sibling.
So I don't know if that worked or not.
But I think spending. You know.
Special times with that sibling,
I think it's important because, yeah,
I know
that you've probably gone
through a lot of things.
I think a sibling looks at a situation
goes, I can't ask that of them.
They're already dealing with this,
(26:54):
this and this.
I can't put this on them too.
And you know, and that as a parent,
then you feel, you know,
a real responsibility
about that
because we need to be there
for you as well for that other sibling.
So I think special time with that
sibling is always fun.
You know,
make sure they've got their own
things, their own lives.
Let them have their friends,
(27:15):
do whatever you can
to protect their time
and protect their identity.
Yeah,
I think you did a great job of that.
You know, on top of on top
of taking care of Scottie
and finding the best interventions
for him.
Well, and
it's one of those things
that you navigate and you think, Well,
I hope that I'm doing this right,
but I don't know
it feels right to me right now.
(27:35):
But, you know,
we always look back on things and think,
you know, I wish I would have.
Every parent does.
That because there's not really
like a framework
to do based on the best of choices.
And every sibling
relationship is different.
You know, we've seen that
every sibling relationship is different
where So that could work
(27:55):
for some families and not for others.
But, you know, we realized
pretty quickly on that
Scotty loves you so much
he would do anything for you.
That's just anything for you.
And so more
so than therapists
or moms or dads or anything,
he takes care of you.
So you know,
we know how he feels about you
in terms of the sibling relationship
(28:16):
he does.
And for any of the listeners,
Scotty is very helpful.
My brother, he's a very helpful guy
and so aggressively helpful,
even if you don't exactly want the help
you get it.
And so but so he helps me get in the car.
He helps me put my seatbelt on.
(28:37):
He takes my purse from me.
I mean, very chivalrous.
So I mean, I've kind of grown up
a little spoiled.
He'll open the car door for me,
and so when it doesn't open, I'm like,
Why isn't the door opening at
the Scotty's job?
So we came home one day.
Literally the two of us were in the car
and you're just sitting there.
And I was like, What do you do?
And you're like,
I got to open my own car door.
(28:58):
Yeah. So used to the brother doing it.
You were just sitting there
and I'm like, What? What you do? And
and you're like,
I've got to open my car door.
Yeah, yeah.
But yeah, Scott is just he's
my best friend, really.
I mean, yeah, he helps me.
He helps me so much. It's.
It's, it's, yeah,
he puts all your things away.
What was it?
(29:18):
We were gone one time
and he wasn't there
to put all your things away.
And you lost everything.
Yeah.
Because you were so used to him
putting all your things away
in the same spot
every time you lost
everything that week that he was gone,
you couldn't find your keys,
you couldn't find your purse.
It was like, Where's my wallet?
It should be on the floor beside my bed.
And that's not there.
(29:39):
Yeah. Yeah.
You were a little lost.
You're like, I can't find anything.
He's dependable, that one.
He's dependable.
Yeah.
And so
with that,
unless you have any closing advice
or comments
that you'd like to share with families.
I think that, you know,
just realizing that you are not alone
(30:00):
in this journey,
it's not one that you planned, It's
not one that you're probably packed for.
But you'll
you'll have to just get a new suitcase
and put some tools in it.
And I have met some of the most
amazing human beings in this world.
And of disabilities and,
(30:21):
you know, and groups,
you know, really groups
that have formed around us
like the Patterson Foundation
and No Marginal Mission
and the Quarterly group and people
that have
formed themselves
to support nonprofits who
support families.
So there are a lot of great people
out there and look for those people,
find your people,
(30:42):
you know, that make you feel comfortable
and make you your entire family
feel welcome and spend your time there.
Spend your time where you're comfortable.
Every day is different
and every day you're you're
you're doing good enough.
Perfect.
Well,
thank you for taking the time to do this
and for explaining your role
as executive director and as a parent,
(31:03):
and for teaching us about that acceptance
and trusting everything
and reassuring us
about all the resources
that are available.
Yeah, well,
I appreciate the opportunity
to to be on your show and, you know,
I'll I'll say I was back
I was on it back
when, you know,
and was just I'm really excited about it.
(31:25):
I think it's a
I think it's a great opportunity
to reach a new audience.
And I'm just excited for you
that you're doing this.
I think it's really cool.
Thank you.
I'm excited to talk to other people
in the community
and parents and siblings as well, So.
I'm excited people out there.
Well, thank you.
Thank you for hopping on today
and for talking to me.
I'll let you get back
(31:45):
to being an executive director
slash parent. Okay. Thank you.
Thank you so much
for joining us here today
and helping families
go beyond the podcast
by Beyond the Spectrum
for more resources or information,
visit our website at
Beyond the Spectrum.org.
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