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Let us know what's up Lindsey Workman takes us on a deeply personal journey through her experience raising a daughter with Tuberous Sclerosis Complex (TSC) - a rare genetic disorder causing benign tumors throughout the body. When Daisy was diagnosed at just three months old after experiencing infantile spasms, Lindsey found herself navigating unfamiliar medical territory with little community support. What follows is a candid conversation about the realities of special needs parenting - fro...
Lindsey Workman takes us on a deeply personal journey through her experience raising a daughter with Tuberous Sclerosis Complex (TSC) - a rare genetic disorder causing benign tumors throughout the body. When Daisy was diagnosed at just three months old after experiencing infantile spasms, Lindsey found herself navigating unfamiliar medical territory with little community support.
What follows is a candid conversation about the realities of special needs parenting - from the early days of diagnosis where doctors cautioned against Google searches to the present day where Daisy, now approaching her ninth birthday, has made remarkable progress. Lindsey doesn't shy away from discussing the difficult parts: the seizures, behavioral challenges, self-harm incidents, and the isolation that many special needs families experience.
Perhaps the most powerful message comes when Lindsey reflects on her decision to keep Daisy in a "bubble" during those early years. "Don't do that," she advises other parents. "Go out into the world early, because you will wish that you did." This hard-earned wisdom highlights how isolation, while sometimes easier in the moment, creates bigger challenges down the road for both child and family.
When Lindsey couldn't find local support specifically for parents of young children on the autism spectrum, she created it herself. Her Facebook group "Caregivers Raising Children on the Spectrum" has become a safe space where parents can connect without judgment, share resources, and simply know they aren't alone. As she eloquently puts it: "Life is messy and it's nice to be messy with others."
Join us for this moving conversation that reminds us all that sharing our stories openly not only lightens our own burden but creates community where isolation once existed. Whether you're a parent, educator, or healthcare provider, Lindsey's perspective offers valuable insights into supporting families navigating complex medical and developmental challenges.
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: Welcome back their
perspectives and experiences and
so on and so forth.
We've been able to have other
teachers, we've been able to
have different service providers
, and one of the things that we
really wanted to do when we kind
of started this whole podcast
idea was let's get everybody at
the table that is involved in
that IEP world, that finds
themselves in IEP meetings and
say, hey, let's create a place
where we can all kind of sit and
chit-chat and learn from each
other.
So today, this evening, this
morning, whenever you're
listening, we have yet another
guest, and this one and I say
this every time, but I mean it
this is a special guest, like we
have another special guest.
But I'm not going to go into
all that, I'm not going to give
out all the details.
I'm going to let Mrs Curtis do
that because— Mrs Curtis.
Yes, okay, I'm going to let her
do that.
All right, you got it, curdy.
Speaker 2: We've got—so.
This person started as a parent
of one of our students and I
think I consider her.
She's still a parent of one of
our students, but I also
consider her a friend, and so we
have Lindsay Workman and she's
also our boss's wife.
Speaker 1: So real quick then,
before we even move on, what is
something that you can tell us
that nobody else knows Like?
Is he like in witness
protection, or is he like a
closet Swifty, or no, no, he
runs his mouth too much to be in
the witness protection.
Gotcha, gotcha.
I get that, definitely not a
Swifty, so yeah.
So we're going to talk about
something tonight that, like I'm
not real familiar with, I can't
even say it right, and so what
I'm also going to do now is I'm
going to go ahead and let Mrs
Curtis lead us in.
All right, I keep calling you,
mrs Curtis.
I'm sorry, laura, I don't think
you ever use Laura.
Speaker 2: It keep calling you
Mrs Curtis.
I'm sorry, laura.
Sorry.
I don't think you ever use
Laura, it's usually Curdy Curdy.
Speaker 1: Curdy.
Speaker 2: Because we have one
that calls me Curdy.
So let's see, we've been.
Is it four years now that we
have been working with your
child, lindsay?
Since kindergarten,
kindergarten, first, second.
Yeah, so this is our fourth
year getting the privilege of
working with Miss Daisy, and so
there's been a lot of growth and
a lot of learning, and I have
to say that I think Daisy's
probably the first and only
student that I know that has
this, the rare disease that she
has, and I'm going to let you go
ahead and let us know.
Like, what is it that?
What is it that Daisy has been
diagnosed with?
Speaker 3: So Daisy is the first
person I've ever known or do
know or met with a tuberous
sclerosis complex, and that can
be the only time we have to say
that we can just call it TS or
TSC.
And that is a rare genetic
disorder that causes benign
tumors to grow in pretty much
all her major organisms and on
the outside of her skin, her
eyes, her heart, her brain, her
kidneys and just on the female
side, when they hit puberty in
their lungs.
Speaker 1: In their lungs,
mm-hmm, oh, that sounds—.
Speaker 3: And I'm not sure why
just the ladies get to enjoy
that.
Speaker 1: Huh.
Speaker 3: Wow.
Speaker 1: Yeah, that's like I
did not expect you to end up on
the lungs Right it's like yeah,
that's pretty crazy.
Speaker 3: And it's once they
hit puberty.
So when I heard that, I stopped
learning more about that
because we had enough in front
of us to learn about.
Speaker 2: Right.
Speaker 1: Right.
Speaker 2: So, one step at a
time.
Because was that?
How old was it?
Was it something that she was
born with or did it develop?
Speaker 3: She was born with it
and how she got diagnosed is at
three months old she started
having infantile spasms and we
took her to Wolfson's and she
had one white patch on her leg
and that is how they made the
connection from infantile spasms
and TS, because with tuberous
sclerosis they get several skin
conditions and one of them is
white patches.
The other ones are, you know,
the freckle looking ones on her
face and like the other one is
like raised, raised, almost like
an orange-feeling type patch,
and she got all three of them
and so that's how they connected
through many other tests that
they did while we were in
Wolfson's, and that was the
first time I've ever heard of
that.
Speaker 2: And so when you first
heard about that, so what you
know, what was your, you know
the experience of learning about
that, I know, I'm sure it was
confusing and it was
overwhelming.
Speaker 3: I had no idea what it
was.
I didn't know what that meant
for the future.
What it meant for right now.
Future, what it meant for right
now.
And the doctor told James and I
not to go and get on Google
because that will they'll freak
us out.
James didn't.
I did Right.
I think that's kind of typical,
yeah that works.
I wanted to be prepared, I
wanted to know what to expect,
but because, like autism,
tuberous sclerosis is a spectrum
, people can have it and you
don't know that they have it.
And they can go their whole
lives without even being
diagnosed because they don't
know that they have it.
But, in true Daisy fashion, it
was very clear.
Speaker 2: She's like, hey,
y'all, it was very clear.
Speaker 1: She's like hey, y'all
, she lets you know, right?
Speaker 3: Yes, and so what were
some of the key challenges
during that time?
For us it was just the seizures
, Because she was three months
old and it started with the
infantile spasm, so that was the
scariest thing, of course.
And then knowing we weren't
sure if she was going to be able
to sit up by herself ever or if
she needed assistance to walk
or be able to feed herself.
But she was able to get on with
early development and we had
somebody come to our house and
help her with OT and it took her
longer to learn to walk, but as
soon as she did she was running
.
Speaker 2: Very good.
So that early intervention,
that's what we keep hearing over
and over again.
Speaker 3: Yes, early
intervention.
So important, so so important.
We got in like as soon as her
diagnosis.
We have somebody coming out the
next week.
Speaker 2: Very good, were there
things that they told you that
she wouldn't be able to do?
That she's doing now.
Speaker 3: They said you don't
know, she could be in a
wheelchair, she could never talk
, her delays could keep her at a
three-year-old indefinitely.
It's just, you never know what
you're going to get.
You don't know what the
outcome's going to be, just you
never know what you're going to
get.
Speaker 2: You don't know what
the outcome is going to be, and
so what are some of the
conditions?
Speaker 3: that go along with
her TS.
So with that, like I spoke
about the skin issues and the
tubers that grow the seizures,
so she's also diagnosed with
epilepsy and hers are called
absent seizures or vocal
seizures, where she just kind of
looks frozen.
Speaker 2: And if you don't know
how to spot it.
Speaker 3: You don't even know
that she's having one.
That is true.
She's never had a major seizure,
thank God.
I would never want to see that
and my heart goes out to any
parent that has to see their
child go through that kind of
seizure.
But still the same.
She could have these seizures
back to back to back to back to
back multiple times a day and
they make her tired, they make
her aggravated and they can
cause delays.
And then another thing that
comes is so they call it TAND
T-A-N-D, which is a behavioral
umbrella just for children with
tuberous sclerosis, because of
the aggressiveness that can come
with the diagnosis sudden rage,
hyper fixation, obsessing
self-harm, which Daisy has had.
Every single thing that they
list with TS she has encountered
and come across and has to
conquer each day.
Speaker 2: And how does that
affect your life on a daily
basis and your family's dynamic?
How does that impact you?
Speaker 3: It's very challenging
, it's very, very difficult, but
I can say for the whole family
that it gets better.
Yeah, we're doing better, she's
doing better.
She has many specialists that
she sees and we finally got her
in with a behavioral specialist
that has given her medicines
that seem to be night and day
for her with her attitude, and
y'all know like she's not a
patient person and that's one
thing that really upsets her is
when she has to wait and that
can cause her to self-harm
herself and get upset.
And immediately after the
behavioral therapist put her on
a medic, a medicine, I feel like
we all saw a big change in her
aggressiveness.
Speaker 2: I agree.
Speaker 1: Yeah, I got the look,
it's like let's wait and see
where you wanted to go.
Speaker 3: But it's just now,
even though it's hard and
challenging, it's just now
feeling like it's getting easier
.
As a family In the beginning a
family In the beginning we felt
like we had to live in a bubble,
and COVID happened right when
we got her autism diagnosis and
right when we started seeing
those behavioral issues.
So it was much easier just to
live in a bubble.
And don't do that.
Don't live in a bubble.
Go out into the world early,
because you will wish that you
did.
Speaker 2: I know that's a
conversation we've had with each
other.
I know we've had it with you
and James as well, and we try to
talk about it and say, yes, do
the hard work now, because they
get bigger.
It's so much harder.
Bigger, they get bigger, they
get stronger and it's it is,
it's they're easier to um, so
like manipulate not no well, I
mean physically manipulate.
Speaker 1: When they're smaller,
you can right yeah but get them
.
Speaker 2: Get them used to
doing things and get into a.
You know, this is what we do
here and this is what we do
there.
When they're smaller, you can,
right, but get them used to
doing things and get into.
You know, this is what we do
here and this is what we do
there.
When they're younger than
trying to take them out and I
think I've shared before about
my experience taking Xander to
Publix and him just sitting down
on the floor and I think he was
about Daisy's age and he's up
I'm not going anywhere because I
wouldn't give him whatever it
was that he wanted at that time
and he plopped his little rear
end down on that floor in Publix
and screamed and of course, I
wanted to go.
No, I'm never taking him to the
store again.
Speaker 3: That's what I did.
That is what I did, and that is
a mistake.
That is a big, big mistake, and
I still don't take her to
stores.
Yeah it's hard.
I tried, I have tried, but I
can see, because of me not doing
that, how much harder I made it
on the both of us.
Speaker 1: Well, I think that
would be, that would be a needs.
They kind of need.
They kind of need.
Some feel like they need some
permission to fail at times and
to do things that, to try the
hard things, and and it all fall
apart.
And that's OK, because that's
that's how we progress, that's
how we progress as human beings,
that's how we progress in our
relationships, that's how we
progress as human beings, that's
how we progress in our
relationships, that's how we
progress as families.
And so it is important to take
those shots and to fail and to
try again and to get back up,
because nothing's going to go
right the first time.
It just doesn't work.
Life doesn't work that way.
Speaker 3: Right, and it's much
better to do that and to feel
embarrassed and to feel ashamed
which nobody should than to feel
isolated your whole life.
Speaker 1: And so what it does,
is it and I'm just kind of
listening to you talk about this
is that it gives you this.
I mean it helps you as a parent
to grow as far as your strength
and your willingness to—we can
always say that we don't care
what people think, but we'll
battle that right.
We battle.
Nobody wants to go somewhere
and have people thinking certain
ways of them, but you know,
when putting yourself in those
situations becomes the norm,
you're going to grow as a person
.
You're going to grow as a
parent becomes the norm.
You're going to grow as a
person.
You're going to grow as a
parent, and then your child gets
the best you that you can give
them, and so that, yeah, I mean
that's like top tier, necessary
work, but it's hard and it's
hard to do it by yourself.
Speaker 3: They get a better
shot at being out in the world
too.
I think that's it's hard yeah.
It's really really really,
really hard.
Speaker 2: Well, like Jared's,
shared some of his experiences
where he's been at family
functions and like okay, I got
to go now.
Us too.
I can't do this now, but then,
like you said, you just keep
trying and the more you do it,
the more they get used to it and
understand okay, this is what I
do here, and that's one of the
things we notice about Xander is
he knows what is expected in
his environments and he
will—that's one of the ways we
realized that that little booger
could sit still for longer than
three seconds is that we went
to a school assembly and there
he was sitting on the floor with
his classmates where, anywhere
else we go, he's running all
around said, okay, yep, we got
you we got your number we'll
definitely get a whole different
version of our children than
the parents agreeded and we're
on both sides of that because
we've had conversations and you
know we've had the shoe, the fun
shoe issues and you know
different new things and a lot
of times they will, our kids
will do things for their
teachers that they won't do,
won't do for us, and yeah, like
what y'all can get out of her is
amazing.
Speaker 3: Not mom.
Mom cannot get a fraction of
what y'all can get from her.
Speaker 2: Well, but mom's going
to love her no matter what she
does.
That's right.
I hope she knows that about us
as well, but she definitely
knows that about mom, yeah well,
she raised me Right.
Speaker 1: Funny how that
happens.
Speaker 2: So you've talked a
little bit about the medical
support and educational support.
Speaker 3: What about support
out in the community?
So nobody knew what tuberous
sclerosis was and I didn't know
anybody with autism or that
wanted to let me know that they
had it or that their child had
it.
I didn't know anything about
autism besides what I saw on tv,
which is more of the Asperger's
or high functioning.
They talk but they're just a
little quirky or different.
So that's all I knew about
autism.
That's not what I got.
I got a different kind of
autism.
So it's like we all had to
learn together my family.
So it's like we all had to
learn together my family,
james's family.
But we are lucky that we both
have families that wanted to be
in Daisy's world and wanted to
learn how to function with her,
what her boundaries are and that
boundaries are important and
that their feelings don't get
hurt when I say we can't come
last minute or I know we just
got here two seconds ago, but we
have to go and no, it's not
that she doesn't like you.
So I didn't have any local
support.
I had support through the
internet.
I found like mom groups and
there's a TS Alliance.
So that's how I really
connected with her condition to
learn about that and I knew
because of her condition that
it's the strong likelihood it's
like somewhere between 70 and
80% that the child will have
autism as well.
So I knew it was coming.
I don't think dad knew, but I
knew it was coming and I knew
around before she was even two
and so she was diagnosed at
three.
Oh no, maybe a little bit
before three because of her
condition.
But we do have a special needs
community in town, but it's
geared more towards after school
and when they're adults, but
there was nothing for young kids
or before school or during
school.
No community like that.
Speaker 2: So what have you done
to help bridge that gap?
Speaker 3: So I created a
Facebook group for caregivers,
for local caregivers, for
children on the spectrum,
because I had so many moms and
people private message me.
Are there any groups locally?
Are there anything here in town
?
My child was just diagnosed, or
I think my child does have, but
they're not comfortable with
being public about it or they
don't know where to go to.
So I created this group, hoping
that they don't have to feel
alone and that they can feel
seen and validated and know that
it's not just them going
through this.
Speaker 1: I know it makes a
huge difference in anything that
you're going through in life
that's difficult to have an
understanding that there are
people that at the very least
can understand what it is that
you're sharing.
They may not have to or they
may not be able to understand
every aspect of it, but if
there's something that you can
connect with or somebody can
connect with you that allows to
kind of lift that that burden
just a little bit, it makes all
the difference in the world.
Speaker 3: yes, it does and I
don't know why nobody is talking
about the no sleep thing with
children with autism, how they
just don't sleep and it's, it's
real.
Speaker 1: Yeah, so xander used
to.
He would.
He would stay up until like 2
o'clock in the morning and he'd
wake back up at 5 when he was
younger.
Speaker 3: Very, very, very
little rest.
Speaker 2: Well, he would go to
bed, but we would hear him in
there.
We were fortunate that when he
went to his room to go to bed he
did stay in there, but we would
hear him in there giggling and
laughing and humming and talking
to himself, and but then, even
on the weekend, that if he
wanted to stay up, he would
still wake up at the same time
that he got up for school.
Now, now that he's a teenager,
oh, yeah, that's not an issue
anymore.
So 10, 11 o'clock.
Speaker 3: Once again it does
get better.
Fingers crossed, and she is
doing so much better.
This year of life is the first
year where I could leave her in
her room and walk away.
The very first year, so she'll
be nine on the 15th.
The very first year, so she'll
be nine on the 15th.
So eight plus years is how many
years I have been right by her.
So of course it's going to be
difficult putting those
boundaries down, but this year,
after some advice from you, and,
by the way, that you was
directed to Laura because I
don't do that well.
As Daisy likes to call her,
Curtis.
Speaker 2: Curtis With her voice
, with that gruff voice.
Speaker 3: She likes to do her
voices.
So, outside help, outside
advice, I would have never even
have tried, because I would have
just thought this is how it has
to be.
I have to be right by her.
She obviously needs me.
I can't just leave.
If I leave her alone, something
bad can happen.
No, that's how she raised me.
That's how she manipulated me.
We can be apart and now that
she'll get up in the middle of
the night and sometimes she'll
just go grab her tablet and not
wake anybody up and what a
blessing.
Right, yeah, year eight has
been much better than year seven
or six or five.
Speaker 2: Those were
particularly really rough years,
you've already shared some
things.
Is there one thing that if you
want somebody to walk away
whenever it is I'm going to say
this evening, but they might not
be listening this evening but
one thing that you would want
them to walk away with?
Speaker 3: I would say don't be
afraid or ashamed to share you
and your child's story and to
ask for help or say, hey, is
anybody else's kid doing this or
is anybody else having trouble
here?
Because you are going to find
so many more people going
through the same thing that you
know, and then you could get
advice that changes your
lifestyle.
That really, really helps is
just don't be afraid, don't be
ashamed.
Speaker 2: There is no reason to
be ashamed.
And so if you had one hope or
wish for the community that you
have started, what would you
like to see it blossom into?
Like perfect scenario.
Speaker 3: I would love for
people to engage more and be
more active and it would be
great if we could start planning
something with the kids and
because we all know we can plan
something and it's not going to
go that way and that's okay and
that's expected from our
children, and we can get our
kids together and you're going
to have to keep running after
yours and this one's going to
probably be hitting himself or
hitting something else.
There's going to be lots of
distractions and not in
quotation marks typical behavior
, and that is a safe place
because nobody will be typical
here absolutely, you got, you
got, mr curtis thinking over
here, mr curtis.
Speaker 1: I'm calling mr curtis
jared.
Yeah, that's okay.
You can call me whatever you
want, curtie, but no, I was just
thinking about the.
Uh, just that.
We've been talking about the
impact of being able to be real
with people being able to walk
through life.
The worst things that we carry
with us are the ones that we try
to hide or the things that we
try to push to the back.
And again like you were talking
about earlier.
Um, early on it is easy to to
hide, it is easy to kind of just
disconnect from everybody and
deal with your own little issue.
But one of the things that
comes with that is this, this uh
, horrible feeling of of being
alone and having no idea what to
do.
So, if we can go ahead and drop
the walls because I know
something else that we run into
an awful lot is that parents
almost feel like they have to be
the authority on all things
that their child is dealing with
.
Right, like, okay, so we have a
son with autism, so we have to
know how to answer every
question about autism.
We have to know all the answers
.
When somebody asks me about it,
I have to be the authority.
I have to know what I'm talking
about.
And the truth is this we're
still learning every day.
I mean, we're raising a boy
with autism.
We've even taken courses on it
it right, we're still trying to
figure it out, um, but if
because we're all still learning
absolutely and when we, when we
stop learning is when things go
bad.
So what is your?
I think you probably already
said this, but I forgot.
So what is the name of this
group that you have on Facebook?
Speaker 3: I should have wrote
that down, so I made sure that I
said it right.
Speaker 1: Well, I'm sure that
Laura will find it if she needs
to.
Speaker 3: I'm pretty sure it's
caregivers raising children on
the spectrum.
Speaker 2: Ding ding, ding, you
got it.
The spectrum Ding ding, ding,
you got it.
I try to make it super clear.
Speaker 1: So what's your point?
Very cool.
So we'll definitely we'll push
that and we'll throw it on our
Facebook and whatnot, because,
again, it's all about the team,
it's about people working
together, and when we work
together and we support each
other, that's when the best
things happen.
And it really does take a
village, it really does take a
tribe, for our children to
become everything that they
possibly can be and to progress
to the point that they are
living their best lives.
And at the end of the day, I
think that's what we all really
want is we want to be able to
see our children function in
life the best that they can and
get all that they can out of it,
absolutely.
Speaker 3: And it's a messy life
.
This is not a cookie-cutter,
picture-perfect portrait here.
Life is messy and it's nice to
be messy with others.
Speaker 2: Absolutely, it's
always more fun right, yes, yes,
and then you don't feel Like
you said, real.
Speaker 3: It's real Because you
keep isolated for so long.
That's gonna come with
depression and that's gonna come
with a lot of other things.
And if you're depressed, how
can you help your child Because
of how you feel?
And then that spirals into.
Then you have guilt about your
feelings and it's okay to feel
that way because it is hard and
you don't know what to do
because nobody knows what to do
when you have a child on the
spectrum.
Speaker 1: We didn't get an
owner's manual.
I'm guessing you probably
didn't either.
Speaker 3: Why keep asking for
one?
Speaker 2: Well, and like you
said, it's a spectrum too, so
what works for one child doesn't
work for another child, exactly
work for another child.
But you know, and just to say
I'm so I was so glad to see you
make that group and to step out
of, because I know you were
looking for something yourself.
Speaker 3: I was looking for one
too.
I was one of the people who
were like, messaging me.
I was messaging others.
I'm like is there a group for
moms with young kids on the
spectrum to where we could just
vent, maybe, or get advice or
anything?
And when about the fourth or
fifth person had asked me, I
said enough is enough, I'll just
make it myself.
Speaker 2: Yep, there you go.
Sometimes that's what we got to
do.
Okay, nevermind, I'm just going
to, I'll do it myself.
Speaker 3: And I hope it gets
more engagement.
It is a safe place.
Nobody is here to judge.
Speaker 2: Absolutely.
Speaker 1: Very good.
Yeah, that sounds excellent
step in moving out and meeting
people and forging these
relationships.
What's been really cool for us
is we've found a whole slew of
people that love Xander that if
we were trying to just, you know
, keep them all held up in this,
he wouldn't be able to
experience that.
They wouldn't get to know him
and he wouldn't be able to
experience that they wouldn't
get to know him and he wouldn't
be able to know them, and so
it's been great to see the
impact on his development
because of the interactions that
he gets to have with people
outside of his own family.
So do everybody a favor.
Speaker 3: Get your kids out
there because, how is the world
supposed to learn if we keep
them isolated?
Speaker 2: Absolutely.
Speaker 1: So, with that said, I
think we're going to wrap this
thing up.
We hit our 30 minutes and see,
it wasn't so bad, was it no?
Speaker 3: I think it was all
right.
Speaker 1: But thank you again,
lindsay, for hanging out with us
, for answering some questions
and being willing to talk to us
about your super awesome
daughter.
And, by the way, I think you're
aware of this, but I just want
to make sure you know, if
nothing else ever pans out, this
girl can be a death metal
singer.
She has a beautiful voice when
she's singing but, boy, when she
turns it on, it's like it's
earth shaking.
Speaker 2: Yes, Found that out
during Christmas carols in her
kindergarten year.
I was like oh, okay.
Speaker 1: She's got it.
Speaker 2: She's a rock star.
Oh yes, Absolutely.
Speaker 1: All right, so we're
going to sign off.
Thank you again for hanging out
with us, lindsay, and thank you
for people other than my mom
that listen to this, because
I've been yelled at a couple
times for saying that she's the
only one that listens.
We're going to wrap this up and
we'll see you guys next week.