January 29, 2024 • 49 mins
Leann, founder of the Neurodiverse Network, joins us talk about life raising neurodivergent children, as well as what led her to found the non-profit and how it helps local families. SHOW NOTES: Neurodiverse Network website Neurodiverse Network Facebook page Neurodiverse Network Instagram Neurodiverse Network TikTok Additional Resources: The Autism Society of Greater Harrisburg International Dyslexia Association Disability Pride PA PA Tourette Syndrome Alliance (PATSA) ACRES Project Spectrum Friends
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Cassy (00:07):
Hi, and welcome to the south central PA mom, Fireflies and Whoopee Pie podcast, where
we discuss motherhood, local events, andeverything in between right here in south
central, Pa.
So sit back, grab a coffee a while and settle
in for the show.
(00:27):
Hi, everyone.
Welcome back to another episode.
Today we have Leanne Firestone, who is thefounder and director of the Neurodiverse
Network.
Leanne, thanks for being with us today.
Leann (00:38):
Hi, thanks so much for having me.
Cassy (00:41):
So you are the parent of a neurodiverse child yourself, correct?
Leann (00:47):
Yes. I have a seven year old and she is neurodivergent and has two different
diagnosis.
Cassy (00:56):
What has that experience been like?
Leann (01:00):
It is definitely a lot different than I expected parenting to be.
Pretty much all of my previous expectationsthat I had before I had a child, I had to
throw out the window.
It is not the same as parenting a neurotypical
child, and the parenting books and theparenting suggestions don't really line up the
(01:23):
same way.
So from the start, I've kind of had to find
alternative routes and methods and just findmy own community and find my own answers and
figure things out on my own.
And it's been a long journey, but I'm really
glad to be where I'm at right now with her,with being seven and having so many resources
(01:43):
and.
Cassy (01:43):
Tools, have you experienced difficulty in getting a diagnosis?
Leann (01:52):
Yes, unfortunately, we were trying to get my daughter's diagnosis and tools to help
her during the pandemic, so that put an extrastress on things.
But even without the pandemic restrictions,the waitlist was still.
I think we waited almost a year.
We were on a waitlist for a year and then we
got dropped.
(02:13):
So it was like a year until we got her proper
diagnosis.
Luckily, I learned that I was able to just
start occupational therapy and counselingwithout the formal diagnosis.
So we were immediately able to get someservices in place and get us all some help.
But, yeah, the actual official diagnosis tookalmost a year to get in and it cost the copay
(02:38):
of our insurance.
And it wasn't like a simple thing to do.
It was a big process.
Cassy (02:43):
Yeah. I have one son who has down syndrome, and then I have a daughter who we
are currently going through this process withtrying to see if she is on the spectrum,
because we very heavily, as far as I'mconcerned, she's autistic.
I know it.
Her team at school knows it.
(03:04):
But getting that diagnosis is so hard.
Leann (03:09):
Yeah. And I understand that.
I think the diagnostic model and the
diagnostic tools they're using aren't asspecific as they could be, and they're not
updated enough.
So it's something that takes a really long,
extensive evaluation, especially in girls, inchildren, in women, in anybody that's learned
(03:32):
how to mask at all.
It's really hard to find their true brain type
because you're dealing with this extra layerof trauma and anxiety and the things that come
along with hiding your disability.
So if you do the evaluation when they're a
little older, it can be hard.
And I think there's not a lot of specialists
that that's their thing.
(03:55):
There's really no one to do adult diagnosis,
but in this area, it's very hard to findpeople like the neuropsychologists.
They're just not out there, and no one elsewill take it on as a specialty.
Cassy (04:08):
Yeah, that was one thing that was just so surprising when we started on this whole
journey, was finding out how, with girls inparticular, getting a neurodivergent female a
proper diagnosis is so much harder because somany of the different.
(04:30):
I hate using the word disorder because I amreally a big proponent of my kids that have
down syndrome and autism.
There's nothing wrong with them.
It's not a disorder, it's not a defect.
But for lack of a better term, putting a name
to whatever disorder they have, it's so hardbecause the baseline is based off of boys, and
(04:56):
that's really frustrating as a parent.
Leann (04:58):
Yeah, it is.
And there's not a lot of new research being
done to update that either.
Like, the diagnostic material isn't really
changing that much, and we're not seeing a lotof medical research on the differences in
gender.
And, I mean, I've brought this up in some of
my seminars, like, the way the gender fluidityis in our human race.
(05:20):
We're missing a bunch of attributes, whetherit's a male or female, we're still missing a
bunch of attributes because we're notaccounting for these extra people.
We only studied white, young males.
That was the only studies done to help figure
out this assessment.
And we're missing adults and women and people
(05:40):
that don't identify as a gender.
We're not getting their attributes included in
this diagnostic material, and that's reallyharmful, because then we're missing a bunch of
people that could be properly diagnosed andget tools and treatment and help.
Cassy (05:57):
So what has it been like? I mean, you said you were able to finally,
after a period of time, eventually get yourdiagnosis.
Was that helpful?
Leann (06:08):
Not really, to be honest.
I got my diagnosis because I wanted to start a
nonprofit, and I was seeing the samepsychiatrist that did my psychologist, that
did my diagnosis, the same specialist for twoyears before I actually got the official
diagnosis.
So she knew I was autistic.
We just never did the paperwork.
(06:28):
But she agreed that people might question my
validity if I don't have an actual diagnosisand I go out in the public eye as this
autistic person.
So I kind of did my diagnosis for other people
because I didn't need to know.
I already knew.
And the diagnostic process, I'm sure it'sdifferent when you're a child, but as an adult
(06:50):
it's kind of rough because you have toidentify all your flaws and deficits and you
have to really show where you're sociallyindifferent and where things don't go well for
you.
And it's just like 4 hours of talking about
that and being tested on your ability toanswer questions.
And I was tested on my iq and my processingspeed and there were so many things that went
(07:16):
into it, but as an adult it's kind of likedemeaning and made me feel a little bad in
some ways because it really highlighted mydeficits in order to get the evaluation done.
And luckily I had a good evaluator who didn'tgive a report back that way.
But I can't read through it very easily.
It's kind of hard to see your deficits written
(07:38):
down on a piece of paper.
So I can imagine a lot of adults don't care
about getting a diagnosis like a medicaldiagnosis because it didn't get me anything.
I'm not eligible for any state benefits andSocial Security isn't available for like,
there's no federal benefits for adults withautism and I'm not eligible for state
(07:59):
benefits.
So I really can't utilize it for anything.
I mean, my boss, they know I'm autistic.
Anybody that would be able to use it against
me in a legal way already knows I'm autisticand I don't need to prove it with a piece of
paper, but it's kind of more for the peoplethat don't believe it.
So I can show them like, no, look, I amautistic.
(08:21):
I went through the proper channels.
Cassy (08:24):
And what has it been like as far as just raising a child that is not neurotypical?
What are the things that you have experienced?
Leann (08:38):
I think it's really hard to just go out in public and kind of appear as normal to
other people.
And that is painful sometimes that we're out
in public and I can tell that people arejudging my parenting or questioning my
parenting because they don't understand thatshe's autistic.
(09:00):
Something that I would say to her that youwould say to a neurotypical child isn't the
same and doesn't apply.
And I can see people get glaring at us or
wondering why a child that's so old isbehaving in a certain way or why she's talking
in such a mature way when she's so young.
I know that we get these things from
strangers, and it can be hard to deal withthat day after day.
(09:24):
I'm pretty good at ignoring it, but that partcan be really hard to kind of get judgment
from people that just simply don't understandhow her brain works or how my brain works, and
that it's a little bit different.
Another thing is connecting with other parents
that can be difficult.
I find it way easier to connect with people
that have neurodivergent kids because theyunderstand the same kind of struggles that I'm
(09:47):
dealing with.
And sometimes if you talk to a neurotypical,
like a parent of a neurotypical kid, they say,well, just put them in their room and shut the
door and do this.
And I'm like, well, I can't even explain to
you why it won't work, but it doesn't work.
So it can be hard to connect with people in
some ways, too.
Cassy (10:06):
Yeah. And I feel like you end up needing to explain away, or maybe you don't
have to, but you feel like you need to, like,well, she's wearing two winter coats because I
know that she's not eating her goldfish.
She's doing this specific thing with them, but
(10:27):
that's just what she does.
Leann (10:30):
Yeah. It comes with its own level of education if you actually want to inform
people.
But most of the time, if it's someone I don't
know, I usually just play it off.
But if it's someone that deserves the
education, then I'll explain it to them.
But talking about my own autistic traits and
(10:51):
talking about brain differences comes with somuch education.
Because the public doesn't understand braindifferences unless they have them or they have
someone in their family that has it, theyreally don't get it.
So it comes with so much education.
I can't just say, like, oh, I have sensitive
hearing.
I have to really explain what that means.
If I want someone to fully understand, I haveto go into detail.
Cassy (11:14):
Right.
Not being autistic myself, I can't, at least
to my knowledge and not just getting onto awhole tangent there, I think one of the things
that you mentioned like getting a diagnosis asan adult.
There's so many people, probably women in ourgeneration, that have no idea that they are on
(11:40):
the spectrum because that wasn't evensomething mentioned when we were growing up.
There was this picture of autistic people thatwas, well, they can't talk, and they're kind
of off in their little fantasy world.
And they're like these little savants that
know random math facts and are really good atvery specific things.
And of course, that's not even remotely closeto true.
(12:02):
Culturally, that was the narrative.
And girls that were autistic, it was like,
well, you're just kind of weird.
But now that I'm seeing my daughter go through
this, it's like, wow, I'm kind of recognizing.
Anyways, there's things that I notice that I
can't understand what she's actuallyexperiencing.
(12:24):
But for example, like with hearing fireworks,she's not afraid of fireworks or loud.
She's not afraid of loud things, but it's likeshe can't be around it.
It upsets her so much.
She has to sit there and have either
headphones or watch from inside.
(12:45):
And at first, for a long time in her life, I
thought it was because she was scared.
And then eventually over a few years, it's not
that she's scared.
It's like the noise is literally bothering
her.
And I think for people that I just can't even
imagine, say, growing up in the autism, andthere's no understanding of things like that.
Leann (13:10):
Yeah. And I think a lot of people in the past and our grandparents, our aunts and
uncles, if they're autistic, they were forcedto either get over, like, if they're autistic
and able to function well enough in society, Ishould say they were forced to get over it.
And if they couldn't get over it, then theydeveloped other mental health issues like
(13:31):
addiction and depression, anxiety, like allthe other things.
And instead of identifying, like, oh, I'mautistic, these are my needs, I need to meet
them.
But there really wasn't education or anything
then either.
So we're just kind of now getting to a proper
level of knowing, and it's not even properyet.
(13:52):
We still don't know enough about autism as asociety, but it's getting a little better.
Cassy (13:58):
Well, and what really strikes me a lot of the time, and I'm sure that you would have
a lot more information than me about this, butwe're just, like, kind of scratching the
surface.
We talk about people being neurodivergent,
like, it's so much more than just autism.
I think that's the most well known one.
But it's just kind of mind blowing that italmost feels like what is neurotypical anyway?
(14:22):
And people are so individual with their needs.
There's so many different things that we
should be providing.
We as a culture, as a society, accommodations
and understanding for just kind of shovingeveryone in this one size fits all, especially
(14:45):
kids, like classroom, for example, andexpecting there not to be any issues.
It's just kind of like a recipe for disaster.
Leann (14:52):
Oh, yeah.
And then the accessibility that I feel like we
have added in the past, like 20 or 30 yearshas been just on top of the systems not
included.
We're like, oh, we'll add these programs for
these children instead of just incorporatingthe whole school to be fit for all for
neurodivergent kids, and then the neurotypicalkids can fit in.
(15:15):
We're doing it the other way around when wecould just be providing this inclusive
service.
Like, if you put a box of fidget toys in a
classroom, yeah, maybe they'll be distractingfor like a week.
But then at the end of that, the kids thatreally need it are going to utilize the fidget
toys, and the other kids are not.
And it might not be the kids that are
diagnosed with autism or ADHD and have an Iep.
(15:38):
It might be someone you had no idea could
utilize a fidget toy to pay attention.
But when we're giving these opportunities and
making the world more inclusive, then thosepeople take advantage of it.
It makes the world a better place, and theother people don't need it.
I don't know.
It's like the people that need the ramp are
going to use the ramp, and the people thatneed the steps are going to use the steps, but
(15:59):
we put both of them there for everybody tohave access.
Cassy (16:05):
And that's actually a really good comparison.
Yeah.
Leann (16:08):
I try to compare invisible disabilities to physical disabilities a lot because it's
easier for the public to understand that waybecause you can see it more and you can see
that there's an obstacle, but it's harder tosee with invisible disabilities,
neurodivergent brains.
Cassy (16:27):
So I also think that you, being an autistic person yourself, would probably have
good perspective on.
Just a lot of times I will see the way that
autism is referred to as this horrible, awful,evil disease that robbed your child from you.
(16:48):
And every time I see that, it's like my eyestwitching a little bit.
It's got to be 100 times worse.
As an actual autistic person.
It's so dehumanizing because autism is notsomething that's like this.
It's just a difference.
It's not something that needs to be cured.
Leann (17:11):
Yeah, the whole phrase of curing autism is still not died out.
People are still utilizing that phrase, and wecan't cure autism.
There is no cure.
It's not a disorder that involves fixing.
It's a brain type, a neurological difference.
I think that it gets confusing for people
(17:33):
because if a child is diagnosed that autisticat two and given everything they could
possibly need and given the perfectenvironment to grow up with, maybe their
autism won't affect them as much as an adult,but they're still autistic.
But think about someone like me that was givenzero resources.
(17:55):
My autism traits didn't change.
They didn't improve with development because I
wasn't given all those tools.
So things are just as hard for me as an adult,
probably a lot harder, because I have to liveas an adult, not just someone taking care of
me like a little kid.
But it's like even if you do give someone all
these tools and try to repair or fix theissues that are going on, they're still going
(18:19):
to be autistic when they grow up.
And there's some things they're going to
struggle with always that you just can neverfix.
There's not a fix, it's just a difference.
Cassy (18:31):
And now, as a parent of a neurodivergent child, what do you hope for
when she becomes an adult?
Leann (18:40):
I really just want her to be happy and comfortable with herself.
I have no other goal.
I know other parents are like, I want them to
live alone.
I want them to have a job, I want them to have
a family.
I don't have that for her.
I want her to do what makes her happy.
So if that does mean some kind of communal
living for the rest of our lives, we'll figurethat out.
(19:01):
And if that means going and meeting someoneand starting a family, I support her in that,
but I don't want to set up an expectation nowbecause I don't know what will make her happy
as an adult and I don't know what herdevelopment is going to look like and where
she's going to be.
So I just want to support her.
And I'm just really hoping that she doesn'tdevelop a masking mechanism like I did, like a
(19:28):
coping skill of masking and hiding who youreally are.
Because I just want her to be able to becomfortable being herself as she grows up and
grows into an adult.
Cassy (19:40):
And that, I think for a lot of kids who are neurodivergent for us as parents, I think
that we are the first generation to really bepushing for a more friendly world for our
children.
And I don't say that to attack previous
parents, like, the knowledge wasn't there.
(20:00):
I think that most of the time, parents,
they're doing the best they can with the toolsthat they have.
Yes, but we are the first, I think, generationthat is given this better understanding.
And so we're trying to build this better worldfor our children that they can navigate it in
a more healthy and safe way.
Leann (20:19):
Yeah.
Cassy (20:20):
And that's probably along the lines of why you founded the neurodiverse network.
Leann (20:26):
Yes, exactly.
I feel like even if you incorporate all the
tools that are given, I'm utilizing all thestuff I can for my daughter, but because she
is, I don't want to use any term that relatesto functioning, but she has a typical iq of
(20:48):
someone her age, and she doesn't need extraassistance in school, and she's pretty good at
controlling her emotions in public.
That kind of stuff means that it restricts us
from services because some children can'tspeak and some children can't eat like they
have food.
Restrictive struggles and there's things that
(21:11):
are basic needs that get put in front of achild like mine and because she's getting
help, but she just isn't getting all the helpbecause there's other kids that need that help
and there's not enough providers and there'snot enough support in public schools and that
kind of stuff.
So she's not getting the same focused
(21:32):
attention that maybe someone else would get.
And there really aren't social opportunities
for her where I could just feel comfortabledropping her off somewhere and it would be
safe, or that I wouldn't have to kind of holdher hand and help her with some of the social
situations.
And if it's a neurotypical place, then people
(21:53):
don't get that.
So I was like, well, how do I create something
like this for my daughter?But then also, how do I create something like
this for myself?Because I need this stuff too.
I need a place to feel like I can actuallyjust be myself and not have to worry if I'm
stimming, like moving in a way that mightannoy a neurotypical person, like flapping my
(22:14):
hands or something.
I don't have to explain why I'm doing that if
I'm in the presence of other neurodivergentpeople.
So then the idea just kind of started to cometogether to like, well, if I want this kind of
community, I just need to create it, becauseno one is doing that.
There's societies that help people.
There's community support, there's disability
(22:37):
services, but nobody is focusing on thecommunity and trying to actually bring
everyone together and just bring all theresources together and have community events
and there's people doing it in a smallercapacity.
But I want to do it.
I want to bring everyone together because
we're all struggling, whether it's withdyslexia or you're autistic, it's like you're
(22:59):
still struggling with similar things.
And the people that need help to get through
the days and the months, those are the peoplethat find our network.
And it just helps everybody feel, I don'tknow, stronger and better because we're
together.
Cassy (23:15):
Yeah. And I think that part of being a family that has disabilities and maybe
neurodivergent parents or children, whateverthe case may be, it's lonely.
Leann (23:32):
Yeah. It can be very isolating.
Even when you have support, you can still feel
like you're the only person that is dealingwith this very specific thing with your child.
It can feel very isolating.
Cassy (23:46):
Well, and even you have my.
My son has down syndrome, so there's Gigi's
playhouse as an example.
But if we go to, that's occasional events,
know, once a week or what have you, and that'snot to say that they're doing anything bad.
What about when we're going to the grocerystore?
(24:08):
Or when I take all my kids out to dosomething, and then he's the only person with
down syndrome there?Or when they're just playing out in the
neighborhood with their friends and people,other kids and kids, God bless them.
I don't ever want to encourage a kid not toask questions.
(24:29):
Like, by all means, ask me questions because Idon't want to stigmatize disability.
But they just don't understand, like you said,so day to day, you feel so alone.
Leann (24:42):
Yeah. It's not like, culturally normalized.
We're not seeing it until more recently.
We're only seeing negative views of it in
media.
Like, they aren't showing positive actors that
are actually disabled, that are, like, nowthey are.
But 20 years ago, ten years ago, there was norepresentation.
(25:05):
It's like just now starting to become a thing.
And I think it's so important.
Yeah, we don't want these children that go toa family event to feel like, yeah, they're the
only one there that is doing a certain thingor looks a certain way or is in a wheelchair,
we want it to feel more inclusive.
And they have other people they can relate to,
(25:28):
even at kids level.
They need that.
Cassy (25:32):
Yeah. And so what are some of the services and events and things that you have
with the neurodiverse network?
Leann (25:41):
Well, right now, it's kind of hard to explain because we're right in a transition
state.
I'm going to be getting a building this year
sometime.
Everything's really hard with a nonprofit
timeline to put a date on it, but hopefullyvery soon we'll have our own facility, so all
these things can happen and more.
(26:02):
But right now, our list is kind of low of what
we actually want to do.
And we're just doing, like, we do a bi weekly
parenting group, virtually.
We have a monthly lego night that we do at a
local church, and then we have support groupsfor adults.
One is at the library and one is at an artstudio.
And then I think we have a couple of otherlittle things that happen monthly.
(26:26):
But once we have a space, we want to havethings all day, every day.
We want to do a lot of things in our ownfacility.
And then we go to every outreach event and tryto have a lot of representation for the
community and adult community.
And this year, we're going to start offering
(26:47):
taking, like, a pop up, calm down tent toevents so we can actually have a sensory
experience at events to really show peoplewhat it can do and how it can help children
and adults calm down if they'reoverstimulated.
And, I don't know, we just want to do so much.
And right now it feels like we're not doing a
lot, but it is a lot.
(27:10):
We've done, like, seasonal events.
We're doing it again this year.
A sensory friendly egg hunt.
We do a sensory friendly trick or treat.
We just try to do, like, seasonal things.
Oh, the Santa, the Santa pictures weresensory.
Cassy (27:26):
And not to cut you off, but I want you to have an opportunity to explain.
That may not seem like a big deal, but one,planning events is very time consuming and
difficult in and of itself.
Leann (27:38):
Make it sensory friendly.
Cassy (27:40):
Right. But I mean, that is a big deal in and of itself.
And that was what I want you to have theopportunity to explain why someone who is
neurodivergent, a regular egg hunt or regulartrick or treating could be so overwhelming.
Leann (27:53):
Oh, yeah.
And that's the part that.
Yeah, like I said, it takes so much educationfor the public because you just say, like,
sensory friendly egg hunt and a neurotypicaladult with no neurotypical family members,
they're not going to have any idea what thatmeans.
Why is it sensory friendly?What does that mean?
The eggs are soft.
They don't know.
(28:14):
Sorry.
So with a sensory friendly egg hunt.
Hold on 1 second, I'm going to have to get thedog.
Sorry.
So for a sensory friendly egg hunt, that one,
(28:34):
we had, like, time slots because when you hostan egg hunt, all the kids start at the same
time and everybody runs out on the field.
So if you have a child that they don't even
have to be to the point where they would be,like, needing a wheelchair, even a little kid
that can't run that fast and someone that hasmaybe an ankle injury, all of the stuff
(28:58):
prevents those kids from getting to the eggs,and it's just such a mess.
And you can fix it by doing time slots.
It's not a big change, but we just were like,
how do we make this adaptable?But we didn't just do that.
We did other things.
Like, we had other activities that were timed
out so the people would come a little bitearly and do some of the crafts, and then they
(29:21):
would do the egg hunt, and then they would gettheir picture, and it was just such a more
relaxed flow, and we had a sensory calm downroom available.
So if someone gets overstimulated, they cango, calm down there.
We just made it normalized to have all thesethings in one place, and it really made
families feel comfortable because some ofthose families would never get to go to an egg
(29:46):
hunt because it just doesn't work for theirfamily.
Because if you were to go, I would imagine,like your son, you might have to help them or
do it for them because the other kids don'tunderstand or respect that they need space.
And we just didn't want that to happen.
So we tried to offer different things.
We did do things like hanging eggs, too, sothey weren't on the ground, so people didn't
(30:09):
have to bend over if they couldn't get down onthe ground.
We tried to do things that just made it moreadaptable for everyone.
Cassy (30:18):
Yeah, it's hard because on the one hand, you don't want to say, like, oh, I think
people tend to feel defensive when you say,oh, well, these egg hunts or trick or
treating.
It doesn't work for a lot of kids.
And then they get defensive, like, well, itwas fine for me.
(30:40):
Why isn't it okay now?And it's like, well, it's not that it's bad
for a neurotypical kid.
This is great.
All the screaming and the running around, ithypes them up.
They're excited.
They have fun.
So for those kids, it's great.
Adding this other service or this other event
is not taking away from what neurotypicalpeople can enjoy.
Leann (31:02):
Oh, yeah.
I don't think anyone came and was, like, bored
because it wasn't loud enough, it wasn'texciting enough.
And we did leave it open to everyone.
That's a big thing about even the name of our
nonprofit.
Having neurodiverse instead of neurodivergent
(31:22):
was something we researched a lot because wedon't want to just be the neurodivergent
community.
Like, yes, we'll have support groups for
autistic people or someone that's parenting achild with neurodivergent.
But when we have these public events, I wantthe public to come.
I want them to see what the difference is inour events and take it home and use it in
(31:42):
their own events.
I want everyone to have these resources, not
just if they're coming to a sensory friendlyevent.
And people will ask, well, can anyone come?And I said, yes, this is a great opportunity
for you to learn more about people withdisabilities.
We are not trying to exclude ourselves fromthe world and stay in our little bubble.
(32:02):
We want the world to adapt to us a little bitmore.
So we want everything, to an extent, to beopen to everyone because we want more people
to learn.
Cassy (32:14):
And when we're talking about overstimulation, is that maybe something you
can kind of explain why these events areoverstimulating or can be overstimulated?
Not everyone's the same.
Why they can be overstimulated.
Leann (32:33):
The most major thing is the amount of people and the noise and refractive noise,
like inside a building, if you're doing eventsoutside, there's so much more flexibility
because people don't get as overstimulated aseasily, and they can remove themselves from
the crowd and they can remove themselves fromthe busy area.
But when you're stuck inside a building, youhave less options.
(32:57):
Like, if it's a busy, packed place, you can'tremove yourself.
And places don't offer sensory relief areasand calming areas.
So if someone goes to a busy event and it'spacked the whole time, their child is just
going to slowly get more and moreoverstimulated until the pressure builds up
(33:21):
and they pop. I know that's what's going tohappen, because it would happen to me, too, as
an adult, especially if you don't haveadaptations like headphones or sunglasses or
things that can help with those sensorysensitivities in a busy area, you can't last
long.
Because I think one of the easiest ways I can
(33:42):
explain it to people is I personally perceivethings really quickly and process things
really quickly, and I have a good photographicmemory, and looking around at stuff is just so
much more for me to take in than a typicalperson.
I feel like if I look at something, I see thepattern, the color, I think about who designed
(34:04):
it.
I don't know.
It's just not exactly the same as looking atsomething from a neurotypical point of view.
So that's really overwhelming.
If you're in a brand new place with all these
people and then add on people trying to talkto you or ask the kid, what do you want to do
next?That's a huge decision to make when you can't
even hear your parents, because there's amillion voices going on, and a lot of us have
(34:29):
really good auditory processing skills,meaning I can hear the person talking to you,
but I can also hear the family next to me,what they're talking about.
And then I can hear the people across theroom, and I can also hear the ticking noise
from someone's phone alarm going off.
I don't know, it overlaps, and it's very hard
to separate and process it all.
(34:50):
So it just feels like you're in a crazy loud
stadium with everybody yelling when maybeyou're only in a room with, like, ten people.
So it can be so overwhelming and doesn't seemthat way because someone's like, well, it's
not even loud in here.
And it's like, yeah, it's not loud, but
there's four different conversations, and Ican hear them all, so I'm not able to focus on
(35:11):
what I'm actually doing.
And that could be so overwhelming for a two
year old or a five year old that doesn'treally know how to identify and express those
feelings yet, or some of them don't evenunderstand that their ears are taking in all
this and it's stressing them out.
They can't process all that yet.
So the parents just have to offer them theheadphones and they put them on and they're
(35:33):
like, yes, this is better.
But they don't know why.
I know why, because I'm a grown up and I canexplain it to people.
But, yeah, a lot of that stuff is just sooverstimulating and overwhelming.
And if we take away some of the people and weadd some calming adaptations and normalize
headphones and normalize low lighting and lessdistractions.
(35:57):
It can make everybody a little happier.
Cassy (36:02):
Yeah. When you say you go to other events, for example, and you have a calming
sensory tent, what would that be like?
Leann (36:13):
It'll have walls on the sides to keep everything feeling kind of secluded.
We haven't ordered a tent yet because we'redoing a lot of research because there'll
probably be some windows.
So if we need lighting, we can.
We're being so picky down to the color of tentwe're choosing because we want to make sure
it's the right color inside, but doesn'tabsorb heat.
(36:35):
And we have to think about all these thingsbecause they're all sensory related.
And inside the tent, we will have it be adarker, calming feeling, not a bright
environment, and hopefully some sensorylighting of different kinds.
Whether it's like a bubble lamp that changedcolors, lava lamp, things that we can travel
(36:58):
with that are safe.
We have a few already, but we're going to be
ordering more and adding a couple of thingsin.
But we have like, hammock swing chairs thatpop up.
They're very cool.
They're like folding chairs, but they're a
hammock swing.
We have like a bungee chair that you sit in
and you can bounce while you're sitting, andthat travels really easily.
(37:18):
So we'll be bringing sensory friendly seatingand lighting and the adaptations like that.
But then we'll also have a basket ofheadphones that are disposable.
So if they need to take them with them backout to the event, they can.
And we'll, of course, have a box of fidgettoys and things that are like, sensory
(37:39):
soothing, like visually soothing, like maybesomething glittery and things that are tactile
and just stuff that can distract people forfive or ten minutes from the overwhelming
event that's going on outside.
And it's almost like a recharge for me, that
could keep me at an event a lot longer.
(37:59):
But if I didn't have that resource, I would
need to leave or go to my car and come back.
I need that reprieve once in a while.
And so do a lot of people with neurodivergentbrains, not only autism.
ADHD is very similar for feeling thisoverwhelm processing kind of feelings, and we
just need a break sometimes.
Cassy (38:21):
But I think that what is likely a huge difference is that now you are an adult,
understand those feelings and say you cancommunicate them, but then you have a child
who is autistic or neurodivergent, and they'refeeling all these things and they don't
understand why and they can't communicate why.
Leann (38:40):
Oh, definitely.
Cassy (38:41):
And so then people see them and they are being judgmental or unaccepting.
Leann (38:49):
Yeah, I definitely agree.
I think that before a child can talk
developmentally, a baby, an infant, I havethis theory that colic is neurodivergent brain
style, because this baby is crying all thetime.
What if they're having sensory sensitivities?How would you know that?
(39:11):
They don't like bright light more than anotherbaby?
Or they don't actually like socks.
They want their socks off their feet all the
time.
And you might not figure that out until
they're a year and a half and can grab themand pull them off.
But maybe they were crying for the first sixmonths of their life because they hate things
touching their toes.
But, yeah, how are we supposed to know that
(39:32):
with these infants that can't give us anyanswers?
And then the children too, they don't have theprocessing power to figure that all out yet.
They're just not there.
Cassy (39:43):
Well, and even when they can talk, my daughter, the one that is on the spectrum,
she's ten, her language skills are developingmore slowly.
I mean, she can talk, she can definitelycommunicate and speak in sentences and all
that.
But by that, I mean when you ask her
(40:05):
questions, for example, it takes her a whileand that's written in her IEP.
Like she needs time to process what's beingsaid and then in her mind, figure out what it
is she's trying to express.
And there are so many times where it's like
she doesn't even know how to explain what isgoing on in her mind.
(40:26):
And that's not like a failing on her part.
Again, as an adult, like when you give the
example of, well, I can hear all thesedifferent conversations and I can also hear
someone's phone and so on.
I mean, imagine a nine year old trying to
explain that.
Leann (40:44):
Yeah, they're just going to tell you it's loud.
Cassy (40:47):
How would they explain that? They don't have the tools to do that because
they probably don't even understand itthemselves.
Leann (40:54):
Yeah, and I think the big thing is I didn't understand that everybody else didn't
feel that way.
That was like a big misconnection that I had
there.
It was like, oh, everyone hates these noises,
and everyone can hear the refrigerator humminguntil I read these memes that are like, no,
it's just you.
(41:15):
I'm like, oh, so not everybody hates the
feeling of microfiber towels to the pointwhere it makes them throw them across the
room.
It's like, oh, no, that's just an autistic
thing.
But yeah, a child doesn't know that.
They just assume that everyone is feelingdiscomfort right now, so they don't see a
difference in their discomfort.
(41:37):
It's hard to identify it.
Cassy (41:41):
So when you are looking ahead at the future for the neurodiverse network, what kind
of things are you hoping to accomplish?
Leann (41:51):
Well, to start, we're hoping that the community center really brings a lot of people
together and can help people connect withinour community, whether that's families or
adults.
We are really trying to help the adult
community because there's a lot of servicesthat just disappear when you turn 18.
And there's not a lot of foundations that aretrying to connect the autistic or adhd adult
(42:17):
community.
And a lot of us need support to function.
So we just are having trouble with life.
So we need this support outlet and we need
resources.
And so I really just want to help everybody to
find those.
We don't want to turn into a place that
provides them.
We don't want to have the therapist there, and
we don't want to have the resources there.
(42:38):
We want to connect everybody to them, and we
just want to be like a safe community place.
I don't want to.
I'm going to have the gym be adult safe too.
I want adults to be able to use the sensory
swings and the crash pads because there isabsolutely no place like that that an adult
(43:01):
could go.
And it's normalized for them to use those
things, especially without a kid.
Like even at the trampoline park, adults look
at me funny because I do like flips and stuffon the trampoline because a lot of adults
don't even get, they don't even go on thetrampolines with their kids.
And I just want a place where it's normalizedto do these things.
And it's normal to hang upside down and have aconversation with someone if that's what's
(43:24):
giving you a sensory relief.
And I think another big part of the sensory
gym will be that people get to try things.
We don't even talk about how expensive it is
to be disabled in this country, but it is.
And a lot of the tools that I want to try, or
I want my kid to try, they cost 50 to hundredsand thousands of dollars.
(43:46):
Some of the sensory equipment cost over liketwo grand just to buy something.
I would benefit so much from one of thosewheels that squishes you.
But the cheapest one you could get is $1,500.
And they're not for adults, they're for
children.
So I would have to buy, like, an adult size
that's probably, like, $4,000.
I can't afford something like that just for
(44:08):
some sensory relief.
So if we can have a gym where we have these
things and people can just use them for free,or they can come test it and be like, wow, I
really benefit from this swing.
I should buy one.
And then because we're a nonprofit, we wouldhave grant services available so they can help
afford it, or we can give them a swing becausemaybe we'll have donations from the swing
(44:30):
company because of all the service we've donetogether.
We just want to have resources, as manyresources as we can, and make them really non
restrictive, because that's another thing thatwe find, too, that you have to qualify for a
lot of services and resources in this state.
And if you have an income and a household and
(44:51):
you have two incomes, if you're married, thataffects all of those things, and you really
aren't eligible for services and help anymore.
So then everything you're doing is coming out
of pocket, and it can be really hard.
So I just want to provide a place where people
can come for free and relax, and we'll havetools and services for free that will help
(45:13):
them.
And I do want to have, like, a food pantry and
help people with living.
I just want to do services that help people.
And then eventually, our long term goals willlook a little bit different after we have the
center established.
Like I said, we want to offer some grants to
the community, but we also want to do muchbigger things, want to offer equal opportunity
(45:37):
housing at some point for neurodivergentpeople.
That's really become on my list, because asI've gotten more and more into working with
the local community just over the past twoyears, housing is the biggest disaster.
People can't afford it.
They don't have housing.
They're living with someone they don't want tolive with.
There's so many issues going on, and I feellike people could benefit from a community and
(46:00):
affordable housing and a place that is justlike neurodivergent, accepting that your
neighbors will understand you a little bit.
So I have big dreams for stuff like that, but
it's all like, in my life plan, it's nothappening in the next six months or anything.
But we did just sign with a developmentcompany that helps nonprofits to grow.
(46:21):
So we're really hoping that things kind offast forward here.
And I want to provide jobs for myself andother neurodivergent people.
I want to help provide people with a salaryand not just a job, a reason to get up and be
happy.
And I want to help people.
(46:43):
So we want to do so much.
And we have a big team that's helping to push
everything forward.
And it's just really exciting that it's all
coming to fruition now.
Cassy (46:56):
Well, that all sounds like just a really amazing resource.
Leann (47:01):
Yeah, it's just like the resource we all need.
It's basically like when you look out thereand you're like, oh, there's no resources.
That's what we're trying to do.
We're trying to fix that spot where people are
like, oh, there's no help.
I'm trying to fill that gap and really give
help to people that need it and aren'treceiving it at this point.
Cassy (47:22):
Well, thank you so much for your time and for being here and talking about all this,
and hopefully it has been educational for ourlisteners.
I will make sure to include links andeverything with information in our show notes.
Leann (47:38):
Yes, definitely.
We purposefully tried to make our website
pretty accessible, but it's still a work inprogress.
But on our website, we have lists ofadditional resources that are local to our
area and then a couple national and globalones.
And then we also have all of our events.
(47:59):
On the website calendar you can find a blog
that's written by myself and otherneurodivergent voices.
So you can read things that neurodivergentadults say and learn more about our brains.
And we also have inclusion seminar on therebecause we want to educate the community and
eventually we want to do more outreach andeducation too, to try to get people to
(48:23):
understand neurodivergent brains a little bitmore.
Cassy (48:28):
Yeah, and that's all really important.
Leann (48:31):
Everybody should go to the website and can find all the information they need.
I want people to be educated and learn moreand get involved.
Cassy (48:42):
Oh, for sure.
So thank you again and I hope you have a great
week.
Leann (48:47):
Thank you.
I appreciate you having me.
It was great talking to you.
Cassy (49:00):
That's our episode for this week.
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in for the show.
(00:27):
Hi, everyone.
Welcome back to another episode.
Today we have Leanne Firestone, who is thefounder and director of the Neurodiverse
Network.
Leanne, thanks for being with us today.
Leann (00:38):
Hi, thanks so much for having me.
Cassy (00:41):
So you are the parent of a neurodiverse child yourself, correct?
Leann (00:47):
Yes. I have a seven year old and she is neurodivergent and has two different
diagnosis.
Cassy (00:56):
What has that experience been like?
Leann (01:00):
It is definitely a lot different than I expected parenting to be.
Pretty much all of my previous expectationsthat I had before I had a child, I had to
throw out the window.
It is not the same as parenting a neurotypical
child, and the parenting books and theparenting suggestions don't really line up the
(01:23):
same way.
So from the start, I've kind of had to find
alternative routes and methods and just findmy own community and find my own answers and
figure things out on my own.
And it's been a long journey, but I'm really
glad to be where I'm at right now with her,with being seven and having so many resources
(01:43):
and.
Cassy (01:43):
Tools, have you experienced difficulty in getting a diagnosis?
Leann (01:52):
Yes, unfortunately, we were trying to get my daughter's diagnosis and tools to help
her during the pandemic, so that put an extrastress on things.
But even without the pandemic restrictions,the waitlist was still.
I think we waited almost a year.
We were on a waitlist for a year and then we
got dropped.
(02:13):
So it was like a year until we got her proper
diagnosis.
Luckily, I learned that I was able to just
start occupational therapy and counselingwithout the formal diagnosis.
So we were immediately able to get someservices in place and get us all some help.
But, yeah, the actual official diagnosis tookalmost a year to get in and it cost the copay
(02:38):
of our insurance.
And it wasn't like a simple thing to do.
It was a big process.
Cassy (02:43):
Yeah. I have one son who has down syndrome, and then I have a daughter who we
are currently going through this process withtrying to see if she is on the spectrum,
because we very heavily, as far as I'mconcerned, she's autistic.
I know it.
Her team at school knows it.
(03:04):
But getting that diagnosis is so hard.
Leann (03:09):
Yeah. And I understand that.
I think the diagnostic model and the
diagnostic tools they're using aren't asspecific as they could be, and they're not
updated enough.
So it's something that takes a really long,
extensive evaluation, especially in girls, inchildren, in women, in anybody that's learned
(03:32):
how to mask at all.
It's really hard to find their true brain type
because you're dealing with this extra layerof trauma and anxiety and the things that come
along with hiding your disability.
So if you do the evaluation when they're a
little older, it can be hard.
And I think there's not a lot of specialists
that that's their thing.
(03:55):
There's really no one to do adult diagnosis,
but in this area, it's very hard to findpeople like the neuropsychologists.
They're just not out there, and no one elsewill take it on as a specialty.
Cassy (04:08):
Yeah, that was one thing that was just so surprising when we started on this whole
journey, was finding out how, with girls inparticular, getting a neurodivergent female a
proper diagnosis is so much harder because somany of the different.
(04:30):
I hate using the word disorder because I amreally a big proponent of my kids that have
down syndrome and autism.
There's nothing wrong with them.
It's not a disorder, it's not a defect.
But for lack of a better term, putting a name
to whatever disorder they have, it's so hardbecause the baseline is based off of boys, and
(04:56):
that's really frustrating as a parent.
Leann (04:58):
Yeah, it is.
And there's not a lot of new research being
done to update that either.
Like, the diagnostic material isn't really
changing that much, and we're not seeing a lotof medical research on the differences in
gender.
And, I mean, I've brought this up in some of
my seminars, like, the way the gender fluidityis in our human race.
(05:20):
We're missing a bunch of attributes, whetherit's a male or female, we're still missing a
bunch of attributes because we're notaccounting for these extra people.
We only studied white, young males.
That was the only studies done to help figure
out this assessment.
And we're missing adults and women and people
(05:40):
that don't identify as a gender.
We're not getting their attributes included in
this diagnostic material, and that's reallyharmful, because then we're missing a bunch of
people that could be properly diagnosed andget tools and treatment and help.
Cassy (05:57):
So what has it been like? I mean, you said you were able to finally,
after a period of time, eventually get yourdiagnosis.
Was that helpful?
Leann (06:08):
Not really, to be honest.
I got my diagnosis because I wanted to start a
nonprofit, and I was seeing the samepsychiatrist that did my psychologist, that
did my diagnosis, the same specialist for twoyears before I actually got the official
diagnosis.
So she knew I was autistic.
We just never did the paperwork.
(06:28):
But she agreed that people might question my
validity if I don't have an actual diagnosisand I go out in the public eye as this
autistic person.
So I kind of did my diagnosis for other people
because I didn't need to know.
I already knew.
And the diagnostic process, I'm sure it'sdifferent when you're a child, but as an adult
(06:50):
it's kind of rough because you have toidentify all your flaws and deficits and you
have to really show where you're sociallyindifferent and where things don't go well for
you.
And it's just like 4 hours of talking about
that and being tested on your ability toanswer questions.
And I was tested on my iq and my processingspeed and there were so many things that went
(07:16):
into it, but as an adult it's kind of likedemeaning and made me feel a little bad in
some ways because it really highlighted mydeficits in order to get the evaluation done.
And luckily I had a good evaluator who didn'tgive a report back that way.
But I can't read through it very easily.
It's kind of hard to see your deficits written
(07:38):
down on a piece of paper.
So I can imagine a lot of adults don't care
about getting a diagnosis like a medicaldiagnosis because it didn't get me anything.
I'm not eligible for any state benefits andSocial Security isn't available for like,
there's no federal benefits for adults withautism and I'm not eligible for state
(07:59):
benefits.
So I really can't utilize it for anything.
I mean, my boss, they know I'm autistic.
Anybody that would be able to use it against
me in a legal way already knows I'm autisticand I don't need to prove it with a piece of
paper, but it's kind of more for the peoplethat don't believe it.
So I can show them like, no, look, I amautistic.
(08:21):
I went through the proper channels.
Cassy (08:24):
And what has it been like as far as just raising a child that is not neurotypical?
What are the things that you have experienced?
Leann (08:38):
I think it's really hard to just go out in public and kind of appear as normal to
other people.
And that is painful sometimes that we're out
in public and I can tell that people arejudging my parenting or questioning my
parenting because they don't understand thatshe's autistic.
(09:00):
Something that I would say to her that youwould say to a neurotypical child isn't the
same and doesn't apply.
And I can see people get glaring at us or
wondering why a child that's so old isbehaving in a certain way or why she's talking
in such a mature way when she's so young.
I know that we get these things from
strangers, and it can be hard to deal withthat day after day.
(09:24):
I'm pretty good at ignoring it, but that partcan be really hard to kind of get judgment
from people that just simply don't understandhow her brain works or how my brain works, and
that it's a little bit different.
Another thing is connecting with other parents
that can be difficult.
I find it way easier to connect with people
that have neurodivergent kids because theyunderstand the same kind of struggles that I'm
(09:47):
dealing with.
And sometimes if you talk to a neurotypical,
like a parent of a neurotypical kid, they say,well, just put them in their room and shut the
door and do this.
And I'm like, well, I can't even explain to
you why it won't work, but it doesn't work.
So it can be hard to connect with people in
some ways, too.
Cassy (10:06):
Yeah. And I feel like you end up needing to explain away, or maybe you don't
have to, but you feel like you need to, like,well, she's wearing two winter coats because I
know that she's not eating her goldfish.
She's doing this specific thing with them, but
(10:27):
that's just what she does.
Leann (10:30):
Yeah. It comes with its own level of education if you actually want to inform
people.
But most of the time, if it's someone I don't
know, I usually just play it off.
But if it's someone that deserves the
education, then I'll explain it to them.
But talking about my own autistic traits and
(10:51):
talking about brain differences comes with somuch education.
Because the public doesn't understand braindifferences unless they have them or they have
someone in their family that has it, theyreally don't get it.
So it comes with so much education.
I can't just say, like, oh, I have sensitive
hearing.
I have to really explain what that means.
If I want someone to fully understand, I haveto go into detail.
Cassy (11:14):
Right.
Not being autistic myself, I can't, at least
to my knowledge and not just getting onto awhole tangent there, I think one of the things
that you mentioned like getting a diagnosis asan adult.
There's so many people, probably women in ourgeneration, that have no idea that they are on
(11:40):
the spectrum because that wasn't evensomething mentioned when we were growing up.
There was this picture of autistic people thatwas, well, they can't talk, and they're kind
of off in their little fantasy world.
And they're like these little savants that
know random math facts and are really good atvery specific things.
And of course, that's not even remotely closeto true.
(12:02):
Culturally, that was the narrative.
And girls that were autistic, it was like,
well, you're just kind of weird.
But now that I'm seeing my daughter go through
this, it's like, wow, I'm kind of recognizing.
Anyways, there's things that I notice that I
can't understand what she's actuallyexperiencing.
(12:24):
But for example, like with hearing fireworks,she's not afraid of fireworks or loud.
She's not afraid of loud things, but it's likeshe can't be around it.
It upsets her so much.
She has to sit there and have either
headphones or watch from inside.
(12:45):
And at first, for a long time in her life, I
thought it was because she was scared.
And then eventually over a few years, it's not
that she's scared.
It's like the noise is literally bothering
her.
And I think for people that I just can't even
imagine, say, growing up in the autism, andthere's no understanding of things like that.
Leann (13:10):
Yeah. And I think a lot of people in the past and our grandparents, our aunts and
uncles, if they're autistic, they were forcedto either get over, like, if they're autistic
and able to function well enough in society, Ishould say they were forced to get over it.
And if they couldn't get over it, then theydeveloped other mental health issues like
(13:31):
addiction and depression, anxiety, like allthe other things.
And instead of identifying, like, oh, I'mautistic, these are my needs, I need to meet
them.
But there really wasn't education or anything
then either.
So we're just kind of now getting to a proper
level of knowing, and it's not even properyet.
(13:52):
We still don't know enough about autism as asociety, but it's getting a little better.
Cassy (13:58):
Well, and what really strikes me a lot of the time, and I'm sure that you would have
a lot more information than me about this, butwe're just, like, kind of scratching the
surface.
We talk about people being neurodivergent,
like, it's so much more than just autism.
I think that's the most well known one.
But it's just kind of mind blowing that italmost feels like what is neurotypical anyway?
(14:22):
And people are so individual with their needs.
There's so many different things that we
should be providing.
We as a culture, as a society, accommodations
and understanding for just kind of shovingeveryone in this one size fits all, especially
(14:45):
kids, like classroom, for example, andexpecting there not to be any issues.
It's just kind of like a recipe for disaster.
Leann (14:52):
Oh, yeah.
And then the accessibility that I feel like we
have added in the past, like 20 or 30 yearshas been just on top of the systems not
included.
We're like, oh, we'll add these programs for
these children instead of just incorporatingthe whole school to be fit for all for
neurodivergent kids, and then the neurotypicalkids can fit in.
(15:15):
We're doing it the other way around when wecould just be providing this inclusive
service.
Like, if you put a box of fidget toys in a
classroom, yeah, maybe they'll be distractingfor like a week.
But then at the end of that, the kids thatreally need it are going to utilize the fidget
toys, and the other kids are not.
And it might not be the kids that are
diagnosed with autism or ADHD and have an Iep.
(15:38):
It might be someone you had no idea could
utilize a fidget toy to pay attention.
But when we're giving these opportunities and
making the world more inclusive, then thosepeople take advantage of it.
It makes the world a better place, and theother people don't need it.
I don't know.
It's like the people that need the ramp are
going to use the ramp, and the people thatneed the steps are going to use the steps, but
(15:59):
we put both of them there for everybody tohave access.
Cassy (16:05):
And that's actually a really good comparison.
Yeah.
Leann (16:08):
I try to compare invisible disabilities to physical disabilities a lot because it's
easier for the public to understand that waybecause you can see it more and you can see
that there's an obstacle, but it's harder tosee with invisible disabilities,
neurodivergent brains.
Cassy (16:27):
So I also think that you, being an autistic person yourself, would probably have
good perspective on.
Just a lot of times I will see the way that
autism is referred to as this horrible, awful,evil disease that robbed your child from you.
(16:48):
And every time I see that, it's like my eyestwitching a little bit.
It's got to be 100 times worse.
As an actual autistic person.
It's so dehumanizing because autism is notsomething that's like this.
It's just a difference.
It's not something that needs to be cured.
Leann (17:11):
Yeah, the whole phrase of curing autism is still not died out.
People are still utilizing that phrase, and wecan't cure autism.
There is no cure.
It's not a disorder that involves fixing.
It's a brain type, a neurological difference.
I think that it gets confusing for people
(17:33):
because if a child is diagnosed that autisticat two and given everything they could
possibly need and given the perfectenvironment to grow up with, maybe their
autism won't affect them as much as an adult,but they're still autistic.
But think about someone like me that was givenzero resources.
(17:55):
My autism traits didn't change.
They didn't improve with development because I
wasn't given all those tools.
So things are just as hard for me as an adult,
probably a lot harder, because I have to liveas an adult, not just someone taking care of
me like a little kid.
But it's like even if you do give someone all
these tools and try to repair or fix theissues that are going on, they're still going
(18:19):
to be autistic when they grow up.
And there's some things they're going to
struggle with always that you just can neverfix.
There's not a fix, it's just a difference.
Cassy (18:31):
And now, as a parent of a neurodivergent child, what do you hope for
when she becomes an adult?
Leann (18:40):
I really just want her to be happy and comfortable with herself.
I have no other goal.
I know other parents are like, I want them to
live alone.
I want them to have a job, I want them to have
a family.
I don't have that for her.
I want her to do what makes her happy.
So if that does mean some kind of communal
living for the rest of our lives, we'll figurethat out.
(19:01):
And if that means going and meeting someoneand starting a family, I support her in that,
but I don't want to set up an expectation nowbecause I don't know what will make her happy
as an adult and I don't know what herdevelopment is going to look like and where
she's going to be.
So I just want to support her.
And I'm just really hoping that she doesn'tdevelop a masking mechanism like I did, like a
(19:28):
coping skill of masking and hiding who youreally are.
Because I just want her to be able to becomfortable being herself as she grows up and
grows into an adult.
Cassy (19:40):
And that, I think for a lot of kids who are neurodivergent for us as parents, I think
that we are the first generation to really bepushing for a more friendly world for our
children.
And I don't say that to attack previous
parents, like, the knowledge wasn't there.
(20:00):
I think that most of the time, parents,
they're doing the best they can with the toolsthat they have.
Yes, but we are the first, I think, generationthat is given this better understanding.
And so we're trying to build this better worldfor our children that they can navigate it in
a more healthy and safe way.
Leann (20:19):
Yeah.
Cassy (20:20):
And that's probably along the lines of why you founded the neurodiverse network.
Leann (20:26):
Yes, exactly.
I feel like even if you incorporate all the
tools that are given, I'm utilizing all thestuff I can for my daughter, but because she
is, I don't want to use any term that relatesto functioning, but she has a typical iq of
(20:48):
someone her age, and she doesn't need extraassistance in school, and she's pretty good at
controlling her emotions in public.
That kind of stuff means that it restricts us
from services because some children can'tspeak and some children can't eat like they
have food.
Restrictive struggles and there's things that
(21:11):
are basic needs that get put in front of achild like mine and because she's getting
help, but she just isn't getting all the helpbecause there's other kids that need that help
and there's not enough providers and there'snot enough support in public schools and that
kind of stuff.
So she's not getting the same focused
(21:32):
attention that maybe someone else would get.
And there really aren't social opportunities
for her where I could just feel comfortabledropping her off somewhere and it would be
safe, or that I wouldn't have to kind of holdher hand and help her with some of the social
situations.
And if it's a neurotypical place, then people
(21:53):
don't get that.
So I was like, well, how do I create something
like this for my daughter?But then also, how do I create something like
this for myself?Because I need this stuff too.
I need a place to feel like I can actuallyjust be myself and not have to worry if I'm
stimming, like moving in a way that mightannoy a neurotypical person, like flapping my
(22:14):
hands or something.
I don't have to explain why I'm doing that if
I'm in the presence of other neurodivergentpeople.
So then the idea just kind of started to cometogether to like, well, if I want this kind of
community, I just need to create it, becauseno one is doing that.
There's societies that help people.
There's community support, there's disability
(22:37):
services, but nobody is focusing on thecommunity and trying to actually bring
everyone together and just bring all theresources together and have community events
and there's people doing it in a smallercapacity.
But I want to do it.
I want to bring everyone together because
we're all struggling, whether it's withdyslexia or you're autistic, it's like you're
(22:59):
still struggling with similar things.
And the people that need help to get through
the days and the months, those are the peoplethat find our network.
And it just helps everybody feel, I don'tknow, stronger and better because we're
together.
Cassy (23:15):
Yeah. And I think that part of being a family that has disabilities and maybe
neurodivergent parents or children, whateverthe case may be, it's lonely.
Leann (23:32):
Yeah. It can be very isolating.
Even when you have support, you can still feel
like you're the only person that is dealingwith this very specific thing with your child.
It can feel very isolating.
Cassy (23:46):
Well, and even you have my.
My son has down syndrome, so there's Gigi's
playhouse as an example.
But if we go to, that's occasional events,
know, once a week or what have you, and that'snot to say that they're doing anything bad.
What about when we're going to the grocerystore?
(24:08):
Or when I take all my kids out to dosomething, and then he's the only person with
down syndrome there?Or when they're just playing out in the
neighborhood with their friends and people,other kids and kids, God bless them.
I don't ever want to encourage a kid not toask questions.
(24:29):
Like, by all means, ask me questions because Idon't want to stigmatize disability.
But they just don't understand, like you said,so day to day, you feel so alone.
Leann (24:42):
Yeah. It's not like, culturally normalized.
We're not seeing it until more recently.
We're only seeing negative views of it in
media.
Like, they aren't showing positive actors that
are actually disabled, that are, like, nowthey are.
But 20 years ago, ten years ago, there was norepresentation.
(25:05):
It's like just now starting to become a thing.
And I think it's so important.
Yeah, we don't want these children that go toa family event to feel like, yeah, they're the
only one there that is doing a certain thingor looks a certain way or is in a wheelchair,
we want it to feel more inclusive.
And they have other people they can relate to,
(25:28):
even at kids level.
They need that.
Cassy (25:32):
Yeah. And so what are some of the services and events and things that you have
with the neurodiverse network?
Leann (25:41):
Well, right now, it's kind of hard to explain because we're right in a transition
state.
I'm going to be getting a building this year
sometime.
Everything's really hard with a nonprofit
timeline to put a date on it, but hopefullyvery soon we'll have our own facility, so all
these things can happen and more.
(26:02):
But right now, our list is kind of low of what
we actually want to do.
And we're just doing, like, we do a bi weekly
parenting group, virtually.
We have a monthly lego night that we do at a
local church, and then we have support groupsfor adults.
One is at the library and one is at an artstudio.
And then I think we have a couple of otherlittle things that happen monthly.
(26:26):
But once we have a space, we want to havethings all day, every day.
We want to do a lot of things in our ownfacility.
And then we go to every outreach event and tryto have a lot of representation for the
community and adult community.
And this year, we're going to start offering
(26:47):
taking, like, a pop up, calm down tent toevents so we can actually have a sensory
experience at events to really show peoplewhat it can do and how it can help children
and adults calm down if they'reoverstimulated.
And, I don't know, we just want to do so much.
And right now it feels like we're not doing a
lot, but it is a lot.
(27:10):
We've done, like, seasonal events.
We're doing it again this year.
A sensory friendly egg hunt.
We do a sensory friendly trick or treat.
We just try to do, like, seasonal things.
Oh, the Santa, the Santa pictures weresensory.
Cassy (27:26):
And not to cut you off, but I want you to have an opportunity to explain.
That may not seem like a big deal, but one,planning events is very time consuming and
difficult in and of itself.
Leann (27:38):
Make it sensory friendly.
Cassy (27:40):
Right. But I mean, that is a big deal in and of itself.
And that was what I want you to have theopportunity to explain why someone who is
neurodivergent, a regular egg hunt or regulartrick or treating could be so overwhelming.
Leann (27:53):
Oh, yeah.
And that's the part that.
Yeah, like I said, it takes so much educationfor the public because you just say, like,
sensory friendly egg hunt and a neurotypicaladult with no neurotypical family members,
they're not going to have any idea what thatmeans.
Why is it sensory friendly?What does that mean?
The eggs are soft.
They don't know.
(28:14):
Sorry.
So with a sensory friendly egg hunt.
Hold on 1 second, I'm going to have to get thedog.
Sorry.
So for a sensory friendly egg hunt, that one,
(28:34):
we had, like, time slots because when you hostan egg hunt, all the kids start at the same
time and everybody runs out on the field.
So if you have a child that they don't even
have to be to the point where they would be,like, needing a wheelchair, even a little kid
that can't run that fast and someone that hasmaybe an ankle injury, all of the stuff
(28:58):
prevents those kids from getting to the eggs,and it's just such a mess.
And you can fix it by doing time slots.
It's not a big change, but we just were like,
how do we make this adaptable?But we didn't just do that.
We did other things.
Like, we had other activities that were timed
out so the people would come a little bitearly and do some of the crafts, and then they
(29:21):
would do the egg hunt, and then they would gettheir picture, and it was just such a more
relaxed flow, and we had a sensory calm downroom available.
So if someone gets overstimulated, they cango, calm down there.
We just made it normalized to have all thesethings in one place, and it really made
families feel comfortable because some ofthose families would never get to go to an egg
(29:46):
hunt because it just doesn't work for theirfamily.
Because if you were to go, I would imagine,like your son, you might have to help them or
do it for them because the other kids don'tunderstand or respect that they need space.
And we just didn't want that to happen.
So we tried to offer different things.
We did do things like hanging eggs, too, sothey weren't on the ground, so people didn't
(30:09):
have to bend over if they couldn't get down onthe ground.
We tried to do things that just made it moreadaptable for everyone.
Cassy (30:18):
Yeah, it's hard because on the one hand, you don't want to say, like, oh, I think
people tend to feel defensive when you say,oh, well, these egg hunts or trick or
treating.
It doesn't work for a lot of kids.
And then they get defensive, like, well, itwas fine for me.
(30:40):
Why isn't it okay now?And it's like, well, it's not that it's bad
for a neurotypical kid.
This is great.
All the screaming and the running around, ithypes them up.
They're excited.
They have fun.
So for those kids, it's great.
Adding this other service or this other event
is not taking away from what neurotypicalpeople can enjoy.
Leann (31:02):
Oh, yeah.
I don't think anyone came and was, like, bored
because it wasn't loud enough, it wasn'texciting enough.
And we did leave it open to everyone.
That's a big thing about even the name of our
nonprofit.
Having neurodiverse instead of neurodivergent
(31:22):
was something we researched a lot because wedon't want to just be the neurodivergent
community.
Like, yes, we'll have support groups for
autistic people or someone that's parenting achild with neurodivergent.
But when we have these public events, I wantthe public to come.
I want them to see what the difference is inour events and take it home and use it in
(31:42):
their own events.
I want everyone to have these resources, not
just if they're coming to a sensory friendlyevent.
And people will ask, well, can anyone come?And I said, yes, this is a great opportunity
for you to learn more about people withdisabilities.
We are not trying to exclude ourselves fromthe world and stay in our little bubble.
(32:02):
We want the world to adapt to us a little bitmore.
So we want everything, to an extent, to beopen to everyone because we want more people
to learn.
Cassy (32:14):
And when we're talking about overstimulation, is that maybe something you
can kind of explain why these events areoverstimulating or can be overstimulated?
Not everyone's the same.
Why they can be overstimulated.
Leann (32:33):
The most major thing is the amount of people and the noise and refractive noise,
like inside a building, if you're doing eventsoutside, there's so much more flexibility
because people don't get as overstimulated aseasily, and they can remove themselves from
the crowd and they can remove themselves fromthe busy area.
But when you're stuck inside a building, youhave less options.
(32:57):
Like, if it's a busy, packed place, you can'tremove yourself.
And places don't offer sensory relief areasand calming areas.
So if someone goes to a busy event and it'spacked the whole time, their child is just
going to slowly get more and moreoverstimulated until the pressure builds up
(33:21):
and they pop. I know that's what's going tohappen, because it would happen to me, too, as
an adult, especially if you don't haveadaptations like headphones or sunglasses or
things that can help with those sensorysensitivities in a busy area, you can't last
long.
Because I think one of the easiest ways I can
(33:42):
explain it to people is I personally perceivethings really quickly and process things
really quickly, and I have a good photographicmemory, and looking around at stuff is just so
much more for me to take in than a typicalperson.
I feel like if I look at something, I see thepattern, the color, I think about who designed
(34:04):
it.
I don't know.
It's just not exactly the same as looking atsomething from a neurotypical point of view.
So that's really overwhelming.
If you're in a brand new place with all these
people and then add on people trying to talkto you or ask the kid, what do you want to do
next?That's a huge decision to make when you can't
even hear your parents, because there's amillion voices going on, and a lot of us have
(34:29):
really good auditory processing skills,meaning I can hear the person talking to you,
but I can also hear the family next to me,what they're talking about.
And then I can hear the people across theroom, and I can also hear the ticking noise
from someone's phone alarm going off.
I don't know, it overlaps, and it's very hard
to separate and process it all.
(34:50):
So it just feels like you're in a crazy loud
stadium with everybody yelling when maybeyou're only in a room with, like, ten people.
So it can be so overwhelming and doesn't seemthat way because someone's like, well, it's
not even loud in here.
And it's like, yeah, it's not loud, but
there's four different conversations, and Ican hear them all, so I'm not able to focus on
(35:11):
what I'm actually doing.
And that could be so overwhelming for a two
year old or a five year old that doesn'treally know how to identify and express those
feelings yet, or some of them don't evenunderstand that their ears are taking in all
this and it's stressing them out.
They can't process all that yet.
So the parents just have to offer them theheadphones and they put them on and they're
(35:33):
like, yes, this is better.
But they don't know why.
I know why, because I'm a grown up and I canexplain it to people.
But, yeah, a lot of that stuff is just sooverstimulating and overwhelming.
And if we take away some of the people and weadd some calming adaptations and normalize
headphones and normalize low lighting and lessdistractions.
(35:57):
It can make everybody a little happier.
Cassy (36:02):
Yeah. When you say you go to other events, for example, and you have a calming
sensory tent, what would that be like?
Leann (36:13):
It'll have walls on the sides to keep everything feeling kind of secluded.
We haven't ordered a tent yet because we'redoing a lot of research because there'll
probably be some windows.
So if we need lighting, we can.
We're being so picky down to the color of tentwe're choosing because we want to make sure
it's the right color inside, but doesn'tabsorb heat.
(36:35):
And we have to think about all these thingsbecause they're all sensory related.
And inside the tent, we will have it be adarker, calming feeling, not a bright
environment, and hopefully some sensorylighting of different kinds.
Whether it's like a bubble lamp that changedcolors, lava lamp, things that we can travel
(36:58):
with that are safe.
We have a few already, but we're going to be
ordering more and adding a couple of thingsin.
But we have like, hammock swing chairs thatpop up.
They're very cool.
They're like folding chairs, but they're a
hammock swing.
We have like a bungee chair that you sit in
and you can bounce while you're sitting, andthat travels really easily.
(37:18):
So we'll be bringing sensory friendly seatingand lighting and the adaptations like that.
But then we'll also have a basket ofheadphones that are disposable.
So if they need to take them with them backout to the event, they can.
And we'll, of course, have a box of fidgettoys and things that are like, sensory
(37:39):
soothing, like visually soothing, like maybesomething glittery and things that are tactile
and just stuff that can distract people forfive or ten minutes from the overwhelming
event that's going on outside.
And it's almost like a recharge for me, that
could keep me at an event a lot longer.
(37:59):
But if I didn't have that resource, I would
need to leave or go to my car and come back.
I need that reprieve once in a while.
And so do a lot of people with neurodivergentbrains, not only autism.
ADHD is very similar for feeling thisoverwhelm processing kind of feelings, and we
just need a break sometimes.
Cassy (38:21):
But I think that what is likely a huge difference is that now you are an adult,
understand those feelings and say you cancommunicate them, but then you have a child
who is autistic or neurodivergent, and they'refeeling all these things and they don't
understand why and they can't communicate why.
Leann (38:40):
Oh, definitely.
Cassy (38:41):
And so then people see them and they are being judgmental or unaccepting.
Leann (38:49):
Yeah, I definitely agree.
I think that before a child can talk
developmentally, a baby, an infant, I havethis theory that colic is neurodivergent brain
style, because this baby is crying all thetime.
What if they're having sensory sensitivities?How would you know that?
(39:11):
They don't like bright light more than anotherbaby?
Or they don't actually like socks.
They want their socks off their feet all the
time.
And you might not figure that out until
they're a year and a half and can grab themand pull them off.
But maybe they were crying for the first sixmonths of their life because they hate things
touching their toes.
But, yeah, how are we supposed to know that
(39:32):
with these infants that can't give us anyanswers?
And then the children too, they don't have theprocessing power to figure that all out yet.
They're just not there.
Cassy (39:43):
Well, and even when they can talk, my daughter, the one that is on the spectrum,
she's ten, her language skills are developingmore slowly.
I mean, she can talk, she can definitelycommunicate and speak in sentences and all
that.
But by that, I mean when you ask her
(40:05):
questions, for example, it takes her a whileand that's written in her IEP.
Like she needs time to process what's beingsaid and then in her mind, figure out what it
is she's trying to express.
And there are so many times where it's like
she doesn't even know how to explain what isgoing on in her mind.
(40:26):
And that's not like a failing on her part.
Again, as an adult, like when you give the
example of, well, I can hear all thesedifferent conversations and I can also hear
someone's phone and so on.
I mean, imagine a nine year old trying to
explain that.
Leann (40:44):
Yeah, they're just going to tell you it's loud.
Cassy (40:47):
How would they explain that? They don't have the tools to do that because
they probably don't even understand itthemselves.
Leann (40:54):
Yeah, and I think the big thing is I didn't understand that everybody else didn't
feel that way.
That was like a big misconnection that I had
there.
It was like, oh, everyone hates these noises,
and everyone can hear the refrigerator humminguntil I read these memes that are like, no,
it's just you.
(41:15):
I'm like, oh, so not everybody hates the
feeling of microfiber towels to the pointwhere it makes them throw them across the
room.
It's like, oh, no, that's just an autistic
thing.
But yeah, a child doesn't know that.
They just assume that everyone is feelingdiscomfort right now, so they don't see a
difference in their discomfort.
(41:37):
It's hard to identify it.
Cassy (41:41):
So when you are looking ahead at the future for the neurodiverse network, what kind
of things are you hoping to accomplish?
Leann (41:51):
Well, to start, we're hoping that the community center really brings a lot of people
together and can help people connect withinour community, whether that's families or
adults.
We are really trying to help the adult
community because there's a lot of servicesthat just disappear when you turn 18.
And there's not a lot of foundations that aretrying to connect the autistic or adhd adult
(42:17):
community.
And a lot of us need support to function.
So we just are having trouble with life.
So we need this support outlet and we need
resources.
And so I really just want to help everybody to
find those.
We don't want to turn into a place that
provides them.
We don't want to have the therapist there, and
we don't want to have the resources there.
(42:38):
We want to connect everybody to them, and we
just want to be like a safe community place.
I don't want to.
I'm going to have the gym be adult safe too.
I want adults to be able to use the sensory
swings and the crash pads because there isabsolutely no place like that that an adult
(43:01):
could go.
And it's normalized for them to use those
things, especially without a kid.
Like even at the trampoline park, adults look
at me funny because I do like flips and stuffon the trampoline because a lot of adults
don't even get, they don't even go on thetrampolines with their kids.
And I just want a place where it's normalizedto do these things.
And it's normal to hang upside down and have aconversation with someone if that's what's
(43:24):
giving you a sensory relief.
And I think another big part of the sensory
gym will be that people get to try things.
We don't even talk about how expensive it is
to be disabled in this country, but it is.
And a lot of the tools that I want to try, or
I want my kid to try, they cost 50 to hundredsand thousands of dollars.
(43:46):
Some of the sensory equipment cost over liketwo grand just to buy something.
I would benefit so much from one of thosewheels that squishes you.
But the cheapest one you could get is $1,500.
And they're not for adults, they're for
children.
So I would have to buy, like, an adult size
that's probably, like, $4,000.
I can't afford something like that just for
(44:08):
some sensory relief.
So if we can have a gym where we have these
things and people can just use them for free,or they can come test it and be like, wow, I
really benefit from this swing.
I should buy one.
And then because we're a nonprofit, we wouldhave grant services available so they can help
afford it, or we can give them a swing becausemaybe we'll have donations from the swing
(44:30):
company because of all the service we've donetogether.
We just want to have resources, as manyresources as we can, and make them really non
restrictive, because that's another thing thatwe find, too, that you have to qualify for a
lot of services and resources in this state.
And if you have an income and a household and
(44:51):
you have two incomes, if you're married, thataffects all of those things, and you really
aren't eligible for services and help anymore.
So then everything you're doing is coming out
of pocket, and it can be really hard.
So I just want to provide a place where people
can come for free and relax, and we'll havetools and services for free that will help
(45:13):
them.
And I do want to have, like, a food pantry and
help people with living.
I just want to do services that help people.
And then eventually, our long term goals willlook a little bit different after we have the
center established.
Like I said, we want to offer some grants to
the community, but we also want to do muchbigger things, want to offer equal opportunity
(45:37):
housing at some point for neurodivergentpeople.
That's really become on my list, because asI've gotten more and more into working with
the local community just over the past twoyears, housing is the biggest disaster.
People can't afford it.
They don't have housing.
They're living with someone they don't want tolive with.
There's so many issues going on, and I feellike people could benefit from a community and
(46:00):
affordable housing and a place that is justlike neurodivergent, accepting that your
neighbors will understand you a little bit.
So I have big dreams for stuff like that, but
it's all like, in my life plan, it's nothappening in the next six months or anything.
But we did just sign with a developmentcompany that helps nonprofits to grow.
(46:21):
So we're really hoping that things kind offast forward here.
And I want to provide jobs for myself andother neurodivergent people.
I want to help provide people with a salaryand not just a job, a reason to get up and be
happy.
And I want to help people.
(46:43):
So we want to do so much.
And we have a big team that's helping to push
everything forward.
And it's just really exciting that it's all
coming to fruition now.
Cassy (46:56):
Well, that all sounds like just a really amazing resource.
Leann (47:01):
Yeah, it's just like the resource we all need.
It's basically like when you look out thereand you're like, oh, there's no resources.
That's what we're trying to do.
We're trying to fix that spot where people are
like, oh, there's no help.
I'm trying to fill that gap and really give
help to people that need it and aren'treceiving it at this point.
Cassy (47:22):
Well, thank you so much for your time and for being here and talking about all this,
and hopefully it has been educational for ourlisteners.
I will make sure to include links andeverything with information in our show notes.
Leann (47:38):
Yes, definitely.
We purposefully tried to make our website
pretty accessible, but it's still a work inprogress.
But on our website, we have lists ofadditional resources that are local to our
area and then a couple national and globalones.
And then we also have all of our events.
(47:59):
On the website calendar you can find a blog
that's written by myself and otherneurodivergent voices.
So you can read things that neurodivergentadults say and learn more about our brains.
And we also have inclusion seminar on therebecause we want to educate the community and
eventually we want to do more outreach andeducation too, to try to get people to
(48:23):
understand neurodivergent brains a little bitmore.
Cassy (48:28):
Yeah, and that's all really important.
Leann (48:31):
Everybody should go to the website and can find all the information they need.
I want people to be educated and learn moreand get involved.
Cassy (48:42):
Oh, for sure.
So thank you again and I hope you have a great
week.
Leann (48:47):
Thank you.
I appreciate you having me.
It was great talking to you.
Cassy (49:00):
That's our episode for this week.
New episodes will drop every Monday.
Make sure to subscribe so you never miss out.
Leave us a review and share to help other moms
find us.
Thanks for stopping by the Fireflies and
Whoopee Pie podcast, the only podcast by southcentral PA moms or south central PA moms.
Until next time.
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