Life in the IEP Tribe

Let us know what's up What happens when a grandmother recognizes the signs of autism in her grandchild before anyone else? Robin Curtis, a veteran educator and children's ministry leader, shares her powerful journey of supporting her grandson Xander through his autism diagnosis and development. The conversation reveals the delicate balance of approaching parents with concerns about their child's development - a moment Robin describes as "one of the hardest conversations I've ever had." Her ...

Show Notes

Let us know what's up

What happens when a grandmother recognizes the signs of autism in her grandchild before anyone else? Robin Curtis, a veteran educator and children's ministry leader, shares her powerful journey of supporting her grandson Xander through his autism diagnosis and development.

The conversation reveals the delicate balance of approaching parents with concerns about their child's development - a moment Robin describes as "one of the hardest conversations I've ever had." Her story illuminates how that difficult conversation sparked a transformative journey for her grandson and entire family.

Robin's professional background working with special needs children gives her unique insight into both sides of the special education equation. She highlights communication breakdowns between parents and teachers as one of the biggest challenges in supporting children effectively. "I don't think you can communicate too much," she emphasizes, noting how collaboration between home and school creates consistency that helps children thrive.

Perhaps most moving is Robin's account of Xander's remarkable progress - from a child who wouldn't eat, make eye contact, or sit still to a young man who now does his own laundry, independently attends youth activities, and engages socially with peers. Her perspective on seeing beyond labels to understand the child's unique viewpoint offers practical wisdom for parents and educators alike.

Throughout the conversation, Robin weaves in her faith perspective, speaking to how understanding God's unconditional love shapes her approach to children with special needs. "Children are so special to Him," she explains, highlighting how this foundation of grace informs her interactions with young people.

Have you noticed concerning behaviors in a child you love? This episode provides compassionate guidance for having those difficult conversations and building the village of support every child needs to reach their full potential.

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What is Life in the IEP Tribe?

Join us as we dive into the world of special education with two educators who have walked the same path as many of you. In addition to teaching in self-contained and collaborative settings, our hosts bring a unique perspective to the challenges and triumphs of raising a special needs child. From classroom strategies to heartfelt family moments, they offer practical advice, empathy, and a community of support. Discover how their personal experiences can shed light on your journey and gain valuable insights into navigating the complexities of special education both in and out of the classroom. Welcome to the tribe!

Speaker 1: laura, yes, we got
another episode and I'm super

excited about this episode.

So here's the thing this is our
17th episode since we started

doing all of this and we've had
a lot of fun.

I mean, you and I have had some
conversations by ourselves.

We have invited other
conversations, conversational

lists, into the fold.

Sure, did it communicate?

I think it communicated.

I think it'll work, um, and
they've been really great,

really great guests and some
great conversations from.

I mean, we've talked to
teachers and we've talked to

paras and we've talked to
parents, but today we get the

coolest one.

It's my mom.

I'm so excited.

I'm so excited to have my
mother with us today, because my

mom has a really neat and
unique perspective when it comes

to things like conversations
about IEPs and special needs,

because she has she has served
children and families in so many

ways over the years that not
only has she worked with

students that have special needs
, not only does she have friends

that have kids that have
special needs, but she's also

Xander's grandma or Grammy.

Grammy, make sure I say it right
, and so she has again an awful

lot to bring to this
conversation, and so I think we

should just go ahead and get
started, all right, but before

we do, you see what I do right
there, there's like a fake out.

I just want to say one quick
thing, and then we're going to

keep rolling with.

This is that Laura and I have
been having some conversations

and discussions about setting up
some special events for people

who would want to be members,
and we'll explain that more

later on.

But what I can say is be
looking out for some really cool

stuff.

Like, we've got some ideas.

Now we're not taking anybody to
like Bermuda or anything like

that, but yes, we have some
other ideas.

So now I'm going to stop
running my mouth and I'm going

to hand over the microphone to
like my other favorite lady in

the whole world, my wife, and go
ahead, laura.

Introduce my mom.

Speaker 2: Introdu mom introduce
your mom.

How am I supposed to introduce
your mom?

So, so, as you said, we have
your mom.

This is robin curtis, and, um,
and uh, robin's had, uh, like

you said, just a vast amount of
experience and uh, working with

the kids with special needs or
families with who have children

with special needs, and, other
than being the best

mother-in-law, she's just a, I
mean, she's just, she has a

wealth of information that she
probably doesn't even know she

has.

So I think we'll just, you know
, just jump right in.

And so, robin, we talked about
your titles that you've had, and

it makes me think of the hat
book.

I know that's one of your and
Jared's favorite books, the hat.

So why don't you tell us some
of the hats that you have worn,

as when dealing with kids and
others with special needs?

Speaker 3: Well, first I want to
say thank you for asking me to

do this, and I feel very honored
when dealing with kids and

others with special needs.

Well, first I want to say thank
you for asking me to do this

and I feel very honored and kind
of scared, but I will just jump

right in and do my best,
because I'm old.

I've done quite a few things.

Quite a few things, I think,
probably going back to when

Jared and Jonathan and Jessica
were in school.

I was in.

They went to a private school
and so to help pay the tuition,

I worked in a classroom as a
classroom monitor, and then I

also I was the children's
ministry director at the church,

which through that I worked
with a lot of families, and then

I was a co-founder of a
preschool.

A friend of mine, god gave her
the vision to start a preschool

and asked me to come along for
the ride me to come along for

the ride.

So I was involved in that.

I worked in the Camden County
school system for approximately

four years.

I worked in the SPED department
for about three and a half

years I think maybe four and
then a half a year in a gen ed

kindergarten class.

Speaker 2: And she was one of
the best SPED parents that I've

had, that's for sure.

Speaker 1: Yeah.

Speaker 2: We've got five
fantastic sped pairs.

I'm not taking away from
anything then, but you know

you're fantastic to work with.

Speaker 3: Until I ran her off
and made her retire.

I was that retirement age.

You were my favorite teacher to
work with.

Speaker 1: I'm glad that you
didn't work with me, mom,

because if so, that would have
really hurt.

Speaker 3: Oh well.

Speaker 1: Oh well, she says oh
well, oh well, so I didn't work

with you.

Oh well, she says oh well, oh
well, I didn't work with you.

Oh okay, so you did work with
me and still picked Laura as

your favorite.

Speaker 3: I didn't, I didn't
work with you.

Speaker 1: Okay.

Speaker 3: I saw you in the
lunchroom.

Speaker 1: Yes, that's true, and
I was very impressed.

Oh well, thank you.

My mom says I'm great at lunch
duty no both of you are.

Speaker 3: I'm so proud of both
of you.

I see how you work together and
y'all are amazing.

I'm so proud of you.

You both are very gifted and
you really love those kids and

it is so evident.

Speaker 2: Thank you.

Speaker 1: And we didn't have to
pay her to say that.

No, and I mean it evident,
thank you, and we didn't have to

pay her to say that.

Speaker 3: No, and I mean it
with all my heart.

Speaker 1: So, mom, I know we've
say mascot, but I feel bad

saying that of this whole
conversation because you know,

outside of education and working
in the school system, he's a

huge part of our understanding
on how children with special

needs operate and things to look
for and so on and so forth.

But I remember a time,
specifically before Xander was

ever even diagnosed, and I
remember you coming to me and

saying you know, jared, I really
think there's some concern here

, some help that he may need,
and really was instrumental in

that initial push to get Xander
help.

Can you talk to us a little bit
about that time and what you

remember seeing?

Speaker 3: Sure, that was one of
the hardest conversations I've

ever had, especially when I saw
how it affected you to hear that

, that I felt like there was um
a need in your child's life.

And but I, he was.

I think he was in preschool
when I started.

He wasn't.

I guess he was about three when
I just started noticing things

like he wasn't um, he wasn't
having eye contact.

He was super, extremely, um,
hyper, very hyper, um.

Of course he wouldn't eat.

That was.

I can remember talking to dad
about that and crying, saying

how is he going to survive?

He was licking the spices off
of Doritos and drinking

PediaSure, yeah, that was it.

And I was just so concerned.

I can remember his birthday,
you know this.

I'm not sure what year it was,
but I can remember.

You know how I'm thinking it
must have been his first

birthday, because we put the
birthday cake on his tray and

all the kids you know how
usually not all the time, but

most kids will just stick their
hands in it and, you know just

make a mess.

Well, xander was different.

Even then it might not have
been his first birthday, but I

can remember he didn't want
anything to do it.

He was almost like repulsed by
the thought of putting his hands

in that.

You know I forgot about that
putting his hands in that, you

know, and I forgot about that,
yeah, and, and I thought about

that later because that was
early in his life, but there was

just things it, it just didn't.

Um, that seemed like there was
something wrong.

Speaker 1: Well, and I and I
know that those aren't easy

conversations, um conversations
to have.

So if and I know this is kind
of a big one, but if there is a

parent, a grandparent or
somebody that is listening to

this and they recognize some
things in a child, a grandchild,

a friend's child, a family
member, do you have any advice

on how to approach that
conversation with the parent?

Speaker 3: Well, I can only
share how I approached you and I

.

You had come over and I I asked
you to please sit down, um, and

I was, I was upset, I mean it
wasn't easy and um, and I just

said to you I, you know, I I'm
not, I'm not a doctor, I don't

but as a grandparent, I have
some concerns and I just want to

share them with you and um, and
it is, it's so hard, but, like

you said, that conversation did
start the wheels rolling.

I mean, it's hard for any
parents and I know, in working

with children, I know that
there's been times when teachers

have expressed concerns about a
child and the parent just

doesn't want to hear that.

You know it's so hard.

They don't want to think that
there might be something wrong.

You know that their child has a
challenge.

But I think, coming from a
grandparent or you know someone

in the family that sees it and
loves that and, you know,

expresses that concern, I think
that can really help.

Speaker 1: I agree 100% and I
and I know it is.

It's nobody.

Nobody wants to hear that
there's certain things that

their child will not experience
in life, right, and some things

that come with that.

But you know I'm eternally
grateful for you and for Dad,

and you know the support of our
family.

This would have been a much
harder trek trying to do it

alone, and for that I can't even
come close to thanking you

enough.

Speaker 3: Oh well, it is our
pleasure.

We love Xander, you know that.

Oh, absolutely.

Speaker 2: I know he he loves
going to Grammy and pause, and

that's for sure.

Speaker 3: Now, now, more pause.

I think the kids like me when
they're younger, but when they

get older, then they're pause.

Speaker 2: For a little bit.

Then they'll be back to Grammy,
but watching the journey that

he's been on and you guys have
certainly been a huge part of

that and a huge support for us
and for Xander so can you talk a

little bit about, like, what
insights you've gained by

watching the challenges and the
triumphs that, as a family,

we've all faced with Xander?

Speaker 3: Oh, my Xander is a
success story.

I hope that doesn't sound bad.

It is amazing how far Xander
has come.

He was a little kid who
wouldn't eat there, was hardly.

I mean, he was very hard to
control.

Was hardly, I mean, he was very
hard to control.

And the thing is is once he got
his diagnosis, it's like he had

us I'll say us, meaning me and
grandpa wrapped around his

little finger because we thought
, oh poor Xander, he doesn't, he

has autism, he doesn't know
what he's doing.

Xander, he doesn't, he has
autism, he doesn't know what

he's doing.

Speaker 2: You know, oh, he knew
, he knew he had a fracture.

He didn't understand.

He didn't know any better.

Speaker 3: It was something I
mean.

Jared has shared how he would
bring him on family trips and

would have to go home because
Xander was so hard to keep near

us, you know, and so until we
went on a camping trip I think

it was the first camping trip
that we went on when Laura

joined our family.

Would you like me to share that
?

Oh?

Speaker 1: absolutely.

Speaker 3: Well, xander had us
wrapped around his little finger

, we had gone camping and we
were all getting ready to leave

the camper and Xander was told
to put his shoes on.

And Xander didn't want to put
his shoes on and he was refusing

.

And finally Laura just very
politely and nicely said well,

everyone, please leave the
camper and just leave Xander by

herself.

And so we did and we sat
outside on the picnic table for,

I would say, about 20 minutes,
laura, maybe, maybe 30.

But we would hear shoes hitting
up against the door and you

know, and I could tell by
Laura's voice, she had her back

up against the door, so Xander
couldn't get out.

And all of a sudden the door
opened and Xander had his shoes

on and he walked out.

And that's when Paul and I knew
this kid knows.

This kid knows what he, you
know.

And it's been amazing, through
the two of you raising Xander,

what he is today.

He went from some child that
was so hard to control to now we

can take him to youth group and
he gets out of the car, he

walks into the youth group, he
knows to get his headphones, he

enjoys his friends.

It's his people, you know.

And, and it's just amazing, he
didn't eat.

He didn't eat until he was what
?

Five years old.

Now, when he comes to my house,
I have have to make sure I have

Dr Pepper Doritos and he does
his own laundry.

He's the only one of my
grandkids that will put dishes

in the dishwasher.

This kid is amazing and I know
it's because God has gifted

y'all to work with him.

And it's amazing what this
young man is.

Speaker 2: I've definitely had a
lot of help along the way.

And talking about him being all
over the place, we were just

telling the story the other day
about how he had us snowed at

first too, because we didn't
think that Xander could sit down

and attend to any tasks until
he went to an award ceremony and

the little booger sat there for
30 minutes on crisscross

applesauce in third grade
listening to an award ceremony,

and so you know we've talked
about needing that tribe.

So either we had the teachers
okay, what are you doing?

Same with getting him to eat at
working with the teachers.

What are you doing?

Same with getting him to eat
working with the teachers?

What are you feeding him at
school?

So we can feed him at home and
let's that first christmas break

.

No, we got to keep this going.

And um and just and you know,
john and michelle, that michelle

, just so you know, took him on
and when he was in elementary

school to be able to be part of
the church services and that's

gone on to, like you said now,
the youth group.

Now he just drop him off and he
goes when.

Before we had to assign a
teenager that was quick enough

to chase him around the church.

So yeah, we've definitely been.

You know a bunch of us.

It takes a village, doesn't it?

It does.

Speaker 3: That's for sure.

Well, I'm so grateful that
y'all have had that village.

Speaker 1: So we were just
having the conversation the

other day of oh man, the story
just left my head, Uh-oh, what

was I about to say?

It was a good story too.

Oh well, if it comes back to me
, I'll bring it back up.

Okay, so let's see, we got some
other questions here.

Oh, this one right here.

Speaker 2: The second part.

Speaker 1: Oh, okay.

So with your time again, with
your time in the school system

and, of course, working with
family members and so on, what

are some things that you think
schools could possibly do better

to support students and
families?

And now there's.

No, don't worry, you're not
going to make anybody mad

because we're not attacking
anyone.

But what ideas?

What are some things that you
think might would be, at the

very least, a good thing to
consider when working with

families of children with
special needs?

Speaker 3: I think what I see
some breakdowns sometime is

communication, communication
between the parent, the teacher

to the parent, the parent to the
teacher, even the teacher to

the counselor.

I think it is so important to
have good communication on

what's going on.

I don't think you can
communicate too much on that.

I think working what I've
witnessed and this is sad to say

, but a lot of times, especially
before a diagnosis if a child

comes in with special needs but
they haven't gotten a diagnosis,

if a child comes in with
special needs but they haven't

gotten a diagnosis, they just
are considered having behavioral

problems and I've witnessed
kids almost being labeled and

that's so sad.

At one time an educator asked
me if I would come in and

observe a child and it didn't
take me too long to see that

this child had been labeled.

I could tell by the way the
children were talking to this

kid.

It's like they were just
repeating what they heard their

parents say.

You know to this kid and I told
the educator.

I said I really believe that
this little guy has been labeled

and I'm afraid that happens a
lot and it helps so much when

there is a diagnosis because
it's like people have more

patience with kids when there's
a diagnosis Later on in watching

this child.

That's another thing, especially
nowadays because the classrooms

are so large.

But to really watch the kids
and learn the kids, because the

same little kid I was in a
classroom with him like two

years later and I learned that
this little kid, he just wanted

to be respected.

If someone would take a toy
from him he would haul off and

hit him.

But if I would have the other
child say, why don't you go ask

him if you can play with that
toy?

That little kid would just hand
the toy over.

It's just he wanted to be
respected.

He didn't want people, you know
, taking things from them and

everything.

And I think if we, if the
teachers and even the parents,

can really watch the kids and
learn how to help them, does

that make sense.

Speaker 1: Absolutely so.

I mean, it really is
counterintuitive.

What you're talking about is
counterintuitive to us as

parents and as adults, where,
you know, a lot of times we want

kids to just do what we tell
them to do, instead of let's

learn the child, let's learn
their thought process and their

perspective.

Speaker 3: And sometimes that's
hard because it's almost you

almost feel like, well, if they
don't do what I'm saying, I'm

losing control.

And that's not it at all.

You need to learn that child,
because they each learn

differently and they, you know,
things look different to

different kids.

Speaker 1: Absolutely, Because
you know all of their, all of

their interactions, all of their
experiences shape their

perspective on how they view the
world around them and we don't

know all of those experiences
and what has happened in their

lives.

Speaker 2: Well, like you've
said, jared, that we live in our

own head, we only know what we
know, we have only experienced

what we've experienced, and so
we don't know what they're

necessarily going through.

I mean, we can try to
sympathize, we can try to

empathize, but it's different
and everybody has their own

perspective based on what
they've been through.

And some of these little guys
and gals have been through so

much that, as children, I don't
know if any of us would have

been able to go through it.

They're dealing with so much
these days.

Speaker 3: And communicating
with the parent too, the teacher

communicating with the parent,
the parent communicating with

the teacher.

You're learning this child
together.

You're helping, you know, to
shape this child in the way he

should go, you know, or she?

Speaker 2: Right, because we
know that we've in conversations

we've had with parents, you
know, sometimes we'll say

so-and-so, you know.

So we celebrate some victories,
oh, so they're doing this,

they'll sit down in the chair
for you.

Well, absolutely.

But then there's also times
that we say, well, we're seeing

this like.

Oh well, we don't see this at
home.

And so, having these
conversations, we can say so,

what have you tried?

Or we can say, well, we tried
this, and so that definitely is

is is key, is that that constant
communication, yes and honest

because we don't be honest about
because we don't be honest

about it.

We don't judge, we just want to
help your kid.

Speaker 1: Right, all right, mom
, I've got one more question.

Speaker 3: Okay.

Speaker 1: And this is a big one
.

Speaker 3: Oh no.

Speaker 1: No, not really it is
a big one, but it's one that I

know you will not have any
issues answering whatsoever.

So anybody that knows me even
half decently knows that my dad

is a pastor and has been a local
pastor here.

For golly, what's it been?

40 years.

Does that sound right?

Speaker 3: Close to it.

Speaker 1: Yeah, yeah, and he's
been doing the pastor thing and

the preacher thing and you've
been by his side.

So what I do know is this One
of the really great things and I

think also one of the scary
things about being the child of

a preacher is that your children
can rat you out.

If you are not the real deal,
they can burn you down.

What I can say is that my
parents are the real deal.

Oh, thank you dear what you hear
preached and shared on Sunday.

They live that life.

It's real to them.

So, mom, tell me, how would you
describe to anyone listening

the impact that God has had on
your perspective when it comes

to working with children and
families?

Speaker 3: Oh, my Children are
so special to Him, you know so

special to Him and special to
him.

You know so special to him.

And um, well, jared, you said
that wasn't going to be a hard

question.

I think you know, just knowing,
knowing Christ and um, and what

he's done for me, um, the grace
and the mercy he has shown me

personally, that has helped me
to show grace and mercy to

adults, but also to these little
kids who they're being, they're

, they're growing and they're
being molded and shaped and, um,

they are so special to God.

I just want to, I just want to
love them, um, I want to show

them unconditional love, just
like God has shown, shown me

love just like God has shown me.

And there's nothing greater
than watching, because, being in

the preschool, I have seen
children grow up and they have

children now themselves, which
is really wild.

And it's so awesome to see that
what God has allowed me to pour

into children's lives.

They have grown and they're
pouring the love of Christ and

godly principles into their
children's lives and there's

just, I don't think there's any
greater reward than that.

Speaker 1: I love you Mom.

Speaker 3: I love you, mom.

I love you, but I was afraid I
was going to start crying there.

Speaker 2: Don't worry, we
already have a couple of times

on this side of the table.

Speaker 3: But it is.

It's such a privilege to be
able to work with kids and you

know, I really didn't plan on it
.

I really didn't plan on working
with children and that's been

my heart and really my call
through my whole life.

Even now I'm still working with
children and working with

families who have special needs
children and that's just a call

that God's put in my heart and
my life and he's equipped me,

he's equipped my heart for that
and I just, I love watching you

and Laura just pour your hearts
into kids and their families.

Y'all have a ministry.

Speaker 2: I know Jared's often
told people that you are a

teacher who never had their own
classroom per se, you know, and

that it's definitely true.

To watch you with the kids is
really you're a natural and you

just it just comes, you come by
it and you just you know what

they need.

And um yeah, it's, it's really
cool.

Speaker 1: Thanks, all right,
mom.

Well, I think we're going to
wrap this up.

Speaker 3: Well, y'all were
pretty nice, Thank you.

Speaker 1: We try our best.

Speaker 2: I was a little scared
.

Well, we're pretty nice.

Thank you, we try our best.

I was so scared.

Well, we're glad you agreed to
it.

Speaker 3: Well, thank you, and
again, I'm I'm honored that you

would even ask me when they.

When you first asked me, it was
like why do I have to offer?

Speaker 1: Well, now, everybody
knows Well, thank you.

All right, mom, we'll talk to
you later.

Speaker 3: Y'all get some rest.

Bye, bye.