Beth Pilchik: Navigating the Dual Path – Advocacy and Motherhood in the Realm of Neurodiversity

Welcome to Why Not Me the World?
Podcast hosted by Tony Mantor, broadcasting from Music City, USA, Nashville, Tennessee.
Join us as our guests tell us their stories.
Some will make you laugh, some will make you cry.
Real life people who will inspire and show that you
are not alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world.
Hi, I'm Tony Mantor. Welcome to Why Not Me the World? Today.
I'm joined by Beth Pilchick. She's a publicist and mark
getting strategists who focuses on promoting businesses that catered to
neurodiverse individuals. Most importantly, she is also a mother of
an autistic child.
So thanks for coming on.
Thank you so much for this amazing opportunity.
Oh it's my pleasure. I understand that you have an
autistic son. What led you to get him diagnosed for autism? So?
I have two children they are five years apart. And
when my youngest son, Matthew, was eighteen months, my husband
said to me, you know, he's not talking like Miles,
he's not learning his letters like Miles. When you go
to the pediatrician, can you mention it. What I didn't
realize was my younger son, Matthew, never slept. He was
eating an uncontrollable amount of food and formula, and he
was always moving around, but he was not communicating or
doing other things.
So I went to the.
Pediatrician for his eighteen month checkup, and you know, we
would talk about things. He said, you know, Evan wants
me to bring this up to you. He wants me
to make sure you know he's really not saying mama, dad, dad, boat,
whatever words that he would say. She looked at me
and she said, so interesting. Fathers never say anything. At first,
she said, I'll wait till list two. And then she said, wait, no,
fathers don't say anything. Go to a speech pathologist. Now
here's the name. And a week later I made an
appointment with a speech pathologist in your He looked at
me and said, here's a pad of paper and a pen.
I want you to write everything down, and I want
you to be very prepared for what I'm going to
say to you. We were talking and she gave me
the list and she goes, you're going to call early
Intervention and you're going to tell them that you need help.
And I said, oh, okay, and I didn't know, I
mean want to talk about clueless. From that moment on,
they said, oh, we think he's autistic, but don't tell anyone.
And I looked at them and I said, excuse me,
and they said, well, we can't tell you. You know,
we can't put it in writing, We can't put it
in our reports. After they did some testing, I told
this to my husband and my husband said, no, you're
going to label someone.
Get it right.
And I called them back and I said, I'll be
really honest with you. If you think my son is autism,
I need to know. I needed to put it in
the report and I need to know what to go
from here. And that's how we knew.
Okay, So how long ago was that?
So Matthew was going to be thirteen in September, So
that was about eleven years ago.
Okay, So eleven years ago the medical industry looked at
autism completely different than they look at it today. How
did they approach that, I mean they used the word autism.
Did they give you a path to tape?
Because I talked with others where they gave him a
little booklet and just said good luck.
So because we were in early intervention and because we
were in New York, and I think that actually had
two really important paths for us.
We were given.
Beach and OT and something called a special instructor. We
were just given that kind of therapy. We were not
ever given ABA. At the time, I had never heard
of it. We were really just going through the I'm
going to say, you know, the public school path. He
couldn't go to, you know, nursery school, so we would,
you know, take him to classes and do things. We
didn't even realize Matthew never slept for seven years. I
didn't sleep treating him to sleep for the night until
he was seven. I didn't realize all the workarounds that
I had created and had been created until he had
gone to a pre K program and the pre K
program which was the public school program. And because I
was the president of the PTA in this public school,
because of my older son, they said to me, Beth,
he needs to go to a special autistic program. I
didn't know what that meant, because you know, Matthew was
speaking more and he had a lot of high promise.
I personally thought he was going to get into like
some gifted and talented program with a PARA and that
would be my life, as I had seen others do.
He wasn't nonverbal like you know friends of mine who
had nonverbal children with a totally different path. And it
wasn't until he was in that program for children with
autism that I really saw he.
Needs more support.
I don't know what I don't know, And that's kind
of when I don't want to say I had a
nervous breakdown, but I had a nervous breakdown.
Yeah. Yeah.
Another thing that I hear lots of times is when
a parent finds out that their son or daughter is autistics,
just so very overwhelming for them. They don't know the process,
they don't know the steps to take. They're just in
complete disarray. So now you found that he's autistic, You've
got him in the pre K, So what was your
next steps?
So the steps were whatever I was being fed by.
You know what I learned from early intervention. You're right,
it was eleven years ago, so Google wasn't Google, and
the resources weren't the resources, And I only knew what
I knew as I watched Matthew self destruct in this class,
you know, running around the school, taking off his clothes,
you know, not you know, screaming, not sleeping, I mean
eating an unbelievable amount of food. I mean, I just
remember at one point she was eating fifty ounces of
formula and no one thought that was a problem. Finally,
when he was in this public school program for kindergarten,
I called a friend crying, and I'm not a person
who cries like I'm like, I just don't know what.
To do anymore. I don't understand.
I knew there were private schools that were hundreds of
thousands of dollars a year, and I knew there were
other supports, but I didn't know a how I was
going to pay for them, or how I get into them,
or what I do or any process. What ended up
happening is two of my friends called their friends and
got me a lawyer, and my lawyer who was a
special led lawyer, and I remember sitting in his office
hysterical crying, and he said it's going to be okay.
Let me give you the path.
And the path was we are going to help figure
out if this public school is going to work, and
if it's not going to work, going to help figure
out a school for you to go to and other supports.
And that's where I learned about after school related services
and applied behavioral analysis, and I learned about speech and
OT and how it works. And then I realized there's
parent training and all of a sudden, and then I
realized in New York there's the Office for People with
Developmental Disabilities and AID there I was being led down
this path. I was like, oh, I got it, and
it really stabilized me because it helped stabilize my child.
And the thing that we did was get Matthew sleeping okay,
And the school helped because when you don't sleep, it
means you don't have the coping skills right, never developed
helf soothing skills.
Really, what it is that it's part of active daily living.
I could read every sleep trading manual in the book,
but the truth is it wasn't going to work for
my kid through ABA and his school and after school. Actually,
it was a lot of therapists. I think it was
like five of those at this point. They taught me
how to teach him how to sleep through the night.
And interestingly enough, these therapists are still my therapist today.
You know, Matthew Serifists they're all having babies. They're on
their third kids and have both of them. One of
the children was having trouble sleeping and said to matt Man,
my son won't sleep through the night.
What do you think we should do?
And Matthew goes, well, you know, I used to have
trouble sleeping and my mom used to give me Lego minifigures,
and I think that you need to buy a light,
a red light, green light, keep it on this, don't
let your kid get out of bed, and get.
Them all these toys.
And we all looked at him and we were like, yeah,
matt that's how we got you to sleep. And it
was fascinating. So it was hard. I mean, let me
tell you, this is a journey of tears and laughter
and reflection. Every time I talk to a family who's
just been diagnosed or feels with their stuff, I remember
that day where I was crying, and I try to
help them as best as I can.
So once you got that all worked out, where did
he go to school? Was it public or private?
We were in public school and we got counseled out.
They basically are like, you need to leave. We can't
support him. So that in New York. They didn't have
another school for him to recommend, so I had to
find a school and then he went to private school
where we have to sue the Department of Education for
his education program, which includes his you know, in school
and then after school services to help make up throughout
the day. And he's been Matthew's been at now three
schools since he's got his third school now and because
of all the therapy, he's in a less restrictive environment
every few years. So it's really amazing, but it's hard work.
He has therapy six days a week.
So did he have a problem within the school system.
I know a lot of kids have issues with bullying?
How was that for him?
So yes and no.
When he was in kindergarten in public school, he's actually
more aware of others than I think. Even today we're
learning how aware he is. He didn't have the language.
On top of his autism. He has ADHD, he has
ar FID, which is a feeding disorder. He has century processing,
he has another speech and learning disability, so there's a
lot of cod conditions. You know, while neurotypical children didn't
bully him, he was put in positions where he wasn't
you couldn't see perspective taking or you know, one child
wasn't nice, or he wasn't you know nice because of
language and other stuff. It's also been educators don't always
act in the best way that they should. Really is
another job of just being so self aware. And I
think from public school to where my son is now,
they know, you know, if Beth Pilcher calls or she's
at school or something happens, I'm going to communicate. I'm
very transparent. And the more language he has better it
is for all of us.
But it's been journey.
So the thing that you just brought up about how
he learned to sleep and how he helped the other
kid with sleeping, did you find by doing that that
he became more focused and really zoned in on learning
that ability to gain that sleep pattern. How have you
seen him evolve from the beginning part of that to
where he is now.
Oh, well, there are goals, you know, we have specific
goals of what we're working on. Sleep was a multi year,
multi step program. For some it was you know, this
is what night would look like. He used to get
up in the middle of the night and I would
be sleeping in my kitchen, and I would walk him
back in and I couldn't talk to him, and then
he would sleep through the night, and then he would
sleep through two nights. The best is daylight savings, because
now he knows what is daylight savings, he.
Puts himself to bed. I mean he knows the system is.
There, and the clock isn't there anymore, but he knows, oh,
it's tenant. And we also played I think the most
interesting thing for his sleep.
We played with what time he could go to sleep.
So you know, many kit parents like, oh, seven thirty,
eight thirty, Matthew is a ten o'clock boy.
He goes about a ten. He wakes up at six.
That's it.
If I get six fifteen, it's a miracle. But ten
o'clock he puts himself to bed. So that was part
of the system. But no, we are very much a
fact based, goal based, rule based process because that's how
Matt's mind works. I don't know if you know about
our FID, but it's called avoidance restrictive intake disorder. A
very small percentage of people, a lot of autistics will
have it. And he's afraid of food, so one of
the things that we are doing is we're getting him
a different type of feeding therapy. Part of it is
his mouth muscles are weak. Part of it is exposing him.
About two weeks ago, I actually told him he had arpit.
It dawned on me. He didn't know.
I was talking to his school today, just having you know,
an end of year conversation and all this stuff, and
they said, you know, Matt, he says, I'm afraid of food.
I'm afraid of this, I'm afraid of cereal, I'm afraid
of milk. I'm afraid of pasta. And that's why he
can't go in a lunch bunch.
Or do this. I didn't know he was telling people this.
So what we kind of do is linear.
For others, it could be different, but it's how I
plan everything.
So is he over the fear of food or how
is that working for him? Now?
He's not over it. I don't think he ever will be.
But I think what we're trying to do is introduce
different foods to him at different textures. We're trying to
introduce different sizes, Like I'm literally giving him food the
size that a toddler would eat. Everything is like today
was a perfect example. They had a student gala at
his school and a schedule was off and he liked
subway sandwiches. The interesting thing about subway is he has
it every day, but he didn't have it today. He
got home from school and he was a little off.
And before I met with you, I go met he
needs your subway and he goes yes, And I said, Okay,
he's still afraid and he still has.
His comfort food.
Right, but we're trying. We're really trying and figuring out
how to help them.
It's hard.
Yeah, So it sounds to me like he's into a
schedule that really helps him from day to day.
Well, it's previewing.
It really is thinking about what he can do so
that it's taken care of and making sure he's prepared.
I said to him today, you know school ends at
twelve thirty tomorrow, you're not going to go home on
the bus. I'm going to take you to feeding. We're
gonna try dig tacos. I just want you to know.
He was like oh, And I'm like great. Or when
he's off from school, he needs to go on vacation,
even if it's somewhere he needs that breakup. So I
think a lot of it is just being really honest
about the process and being really not emotional. I didn't
expect him to come home from this party and freak
out by not having a subway.
He needs the.
Structure, and he also needs the grace that he's allowed
to have emotion. That's one of the things that I
have come to learn is wait a minute, he still
has emotions, and he's still a person, and he can still.
Be pissed at you. Even though he has.
A communication disorder, it's harder for him to communicate. I
have to help him communicate. Sometimes we give him a
blank piece of paper. Sometimes we give him an iPad.
Sometimes we give them things that tight, you know, we
give them the ability to communicate in different ways so
that he's not angry and using his emotions and where
and I learned from him, I'm like, you know, maybe
I need a break, maybe I need to go a walk.
Maybe you know, Okay, so you bring up emotions. It's
a well known fact that some autistic people have meltdowns. Now,
when his meltdowns hit that meltdown stage, is it one
of those meltdowns so you have to really watch out
or is it just he's ticked off.
So when he was a child five or six, they
were very, very, very volatile. We conducted a neurosite. We
learned that he had this speech and language learning disability
on top of everything else. That is what the issue was.
He didn't have the words, so we give him the words. Now,
in all honesty, he rarely has crazy meltdowns. Oh, we're
an ABA family, we're a DBT family, we're a CBT family.
So what that really means is what's the antecedent, what
is coming before the outburst, and then what's the consequence
of it, So if we can break it up whatever
it might be, that's the helpful. We were at our
beach club this weekend and Matthew wanted an ice cream sandwich,
which by the way, is a new food, and that's
what he wanted, and every time he would order, they
wouldn't have it. So on Saturday we went to the
beach club and I go, Matthew, come on.
He's like what.
I'm like, We're gonna go to the ice cream dance
and we're gonna see if they have it and stop
and if they do, you can get it later. And
if they don't, we can look for a part two.
I don't want it to upset you. I want you
to be prepared. And he was calm, he wasn't hungry.
And we went up and I said, do you want
to ask her? Or do you want me to ask her?
He goes, lady, do you have the rectangular ice cream
that has ice? And I'm like, are you referring to
an ice cream sandwich man? He goes, yeah, yeah, do
you have an ice cream sandwiches today? And I was
ready for no, and she goes yes I do. I
go great, I go mad, they're back in stock He goes, great,
I'll see you later. What I did was I cut
it off. I cut it off before it started. When
I told my husband, he goes, oh, that was such
a good idea. I said yes, because he was calm,
we were asking. Didn't want now, and then I gave
him money and I let him buy it later. It's
it's interesting language, whether it's verbal or nonverbal, written through
a device, whatever it is, is so vital to self regulation.
I've learned that.
I think I've learned that from non verbal kids. More
I've learned it from my own.
So he's eleven years old now, correct he's he's twelve
and a half.
Oh, okay, twelve and a half. So what's he do
for fun now?
Just to sit back, chill, relax and not have any worries.
I don't think he ever not worries.
I think he's always in a constant state of something.
But he likes to play video games. He likes to
watch YouTube videos. He likes to bounce on a yoga ball.
He can do tricks that I've never seen on a
yoga ball. He likes to go down the slide and
swing on a swing. That is really his thing and
he like and he likes routine. So for him, he
eats the same things when he's home. He's becoming more
comfortable and having a sense of humor or realizing what
a joke is. And right now he's very into puberty.
He's like, mom, hubert is and I'm like, yes, do you?
So it's interesting to see his humor. He does want
to be social, so he's trying to talk to people.
For him, he's like.
I need to relax, and he'll be in front of
some kind of technology. He does have a phone, so
he likes to text certain people. So he texted me
today I'm ready to be picked up for my gala.
You know, which a normal kid would say. You know,
a neurotypical kid. He's a funny kid. He's not a
kid who's going to say I love you a lot,
or I love you mom, or he'll say certain things.
It's like, you know, Okay, So you've seen him evolved
in the last twelve and a half years. He's grown,
becoming his own person. Where do you see him, say,
five years from now.
That's the question. I have seen such growth and development
in the past couple of years, just in the different
schools that he's been in.
That's the plan. I don't know, you know. I think
that he's I don't know, you know.
I think that he has rules for himself, so I
have to see what rules he'll give him. I hope
he will be someone independent. I hope he will be
somewhere on his own in some capacity.
I have no idea. I hope he.
Can learn how to eat in a restaurant without me,
and I think that's what he hopes. I think it's
two step forward, three step back, four step forward.
You know, we're getting ready for his bar mitzvah.
And if someone told me that Matthew could read Hebrew.
I mean I can't he can.
If someone told me that three years ago, I would
have laughed at them. So I hope the world is
his oyster. But I don't know.
It's going to be very controlled. But I don't know.
I think it's going to be a structured place, a
structured job. I don't know. I mean, he had a
job in his.
School this summer. They have jobs at school, and he
was person in the library and he quit because it
was boring, so that he was unemployed. And then he
had to apply for another job. And he applied for
a job as the laptop technician, and he goes mom
when there's nothing to do.
It's really boring. So I think, whatever it is, he
has to be busy. I'm hoping. I'm hoping, but you
never know.
Now, didn't you tell me at one point in one
of our conversations that he's like the poster child for
certain things in New York. I think it was something
to do with advertising. I just can't remember.
Oh oh yeah, so yeah, So whenever are you talking
about the about the bus about the buses?
Yeah, I think that was it.
So many years ago.
So by trade I'm a marketing strategist and publicist. Many
many years ago, there were issues with the New York
City buses as they mean, you know, school buses, as
there always are.
Right.
A reporter was looking for a family to interview, and
Matthew and I were available because I am not I'm
transparent so if you want to know or I will
tell you anything, whether it's the good or the bad.
So they interviewed us for the buses, and Matthew and
I were on the news, and then many years later
we were on the news again. And it's funny whenever
there's a bus story, they used b roll from Matthew
and the truth.
Is we might have helped the bus situation a little bit.
Well that's great.
So now as a mother, you're seeing him grow, You're
seeing him do all these things that you didn't really
think that he could do but has overcome. So what
do you see for his talent? Does he have an
underlying talent that you can see that can grow as
he gets older?
You know, he draws very nicely and creates these worlds.
He created a fake Pokemon game on paper, and he
has different worlds.
You know.
He equates autism with having a vivid imagination, and he
once said that, So I'm hoping he's in some kind
of creative field of some sort. I don't know what
that is, because you have to be structured in his life.
I think teaching him to be flexible, I hope will help.
You know, my son is going to college for game design,
so maybe he'll learn from Maybe matt and Miles will
will learn together or do something together.
I don't know.
I think the most important thing for me is having
him follow his passion, having him learn to be kind.
I think in his mind there are so many options
he can't choose, so I just have to help him
figure out.
How to do that.
He loves animals and he loves it. You know, it's interesting.
You never know what comes out of his head.
Okay, you just brought up another grade point, and that's
his brother. Yeah there's five or six years difference, right, Yeah,
So how do they get along together?
What's their dynamic?
Like, you know, they're brothers.
Also, Matthew has no problem being in his own world,
so Miles will will try to associate with him and
do things with him, and they play. They play right now,
they're playing Fortnite together and it's very funny because they
do it on two different computers in two different rooms
and I had no idea about it, and I can watch.
So I think they have a very funny relationship. And
I think Matthew, again being black and white, if Miles
is annoying, Miles is annoying, or Miles needs a hug,
or it's very transactional. But I think in so many
ways it'll be interesting in September when Matthew, you know,
Miles isn't here. How Matthew handles that dynamic and that
just right?
Yeah, So is there anything that I've missed that you
think needs to be brought to attention, anything that you
think might help others out there?
You always have to be on your toes, you know.
I think that, and you have to not I mean,
I try not to beat myself up on the fact
that I might make a mistake or I might miss it,
and I try to utilize my team. You never know,
And I think that that and my team can be
people I knew a thousand years ago. So I think
that would be my advice. Is what you see today
is not tomorrow is going to be you see in
five years is not what yesterday? You know you it's
going to be okay, and you're going to be okay,
and it's not easy. And I think my favorite bit
of advice is trust also your friends that don't have
special needs children. I have amazing conversations with my friends
whose kids are, you know, mainstream or more neurotypical. And
I remember giving advice to my really good friend whose
child who's going off to college, and this was many
years ago, and she was terrified what he was going
to do and how he was going to do it.
And I said to her, oh, my goodness, you're you're
like me and June.
And she's like, why to go every June when the
school year starts, because Mac goes to school year around.
I said, I'm always treading water. How's this class going
to be, how's the transition going to be, what's the
bus going to be like? Is it going to eat?
Is he going to be friends? What's this teacher going
to be like? And it's going to take me six
weeks for me to learn how to float. After that,
I then swim, I said, the same is true for you.
In six weeks, your son will be in college. You'll
know if he knows how to do laundry. You'll know
if he goes to his classes. You'll know if he
made friends, and then you could sleep with one eye open.
And actually I spoke about it with that friend the
other day and she laughed, she didn't remember the story.
And I'm like hanging on to it, you know, over years,
and that would be it. It's like cut yourself some slack.
Right, right.
So do you have you noticed where your son loves
to have a situation of where everything is kind of
laid out, kind of planned out, structured, and then all
of a sudden, just the structures there, the plans there,
and then, like anything else, you have a bump in
the road where something just throws it off course for
a brief minute or brief ten minutes or however, how
does he react to that to get back to that structure.
You know, I think we try to try to teach
him to tell us what's going on. I think we
had that situation. Said it was last week he had
his you know, thirteen year old checkup. You know, we
took him to the doctor and you know, as you know,
I had warned him and done it, and then all
of a sudden we're walking over there, and he goes, mom,
don't want a shot.
I don't want to get blood. And I realized at.
That moment, I normally bring a therapist with me to
do that where I have a social story to prepare him.
And oh, my goodness, this is a new doctor that
he hasn't met before. And I realized as I'm walking,
because we live in New York City, I'm walking these
four blocks to the doctor.
This is going to be interesting. This is interesting.
And I started to prep him, and all of a
sudden we get into the doctor and in my Matthew goes,
I hope I don't need a shot, and I go,
I don't know, you might. You're going to be thirteen.
And he said to the nurse do I need a shot?
And she goes no. And then it was matt we
need to check your eyes, and he goes, great, my
mother forgot my goal glasses.
And he looked at me and he goes, now what.
And I looked at him and I go, oh, forgot
your glasses.
I totally forgot.
And I couldn't leave because I didn't have anyone with me.
I said, stay tuned, and I called my husband, who
haven't been working home and I said, oh, MAT's Backpa,
get me his glasses. We need them now. And I
just looked at him and he goes, I go, Dad's
on his way. He goes, Dad's coming. You forgot my
glasses and now you're calling him to come and he's
like going off on me and he goes to the nurse.
I really should have had my glasses. I can't.
And you could see he was nervous and that's how
he was not cursing and he wasn't screening anyway. And
then when the glasses showed up, he goes, okay, and
it was so that's what we try to do. I mean,
that's a long winded story, and I'm sorry, but there
good problem.
All right.
So now you've told me how he's developed, how he's evolved.
Let's turn this around a little bit. When you first
found out, you was in this black hole of not
knowing what to do, and now you're pretty much the
guru of how things go. How have you changed involved
in How have you noticed that you've changed.
Oh, I'm a completely different human being.
I went from an area of complete fear and ignorance
and empathy to information accovacy, care, and joy like my
child is amazing and the lens of which his life
has made our family even better. By the way, it's hard,
like I'm not saying it, you know, the lawsuits every
year and the fighting every you know, everything I need
to do to make it get to this way, but
I couldn't imagine our life any different. And I think
my family I'm saying extended family and uncle's grandparents, I
think they are better for it because we've all learned.
How do you eat dinner.
With someone who's underneath the table because he can't see
the food. I love helping other people not feel the
uncertainty and the shame and the embarrassment of the labels.
My son's on medication, that's part of his one of
the modalities I love saying to you know, talking to
families about that process or helping find resources.
I don't think.
I would have worked with as many neuro diverse centric
businesses if I didn't, you know, it is just made
me more joyful, lucky the other families that I've met
whose children have different strengths and weaknesses than my child.
My favorite statement is, and I have a lot of
friends whose kids are nonverbal, and I say to my friends,
your kids can do things that my Matthew will never do.
And it's true they can because they're always looking at
the things Matthew can do that their child could do,
but they don't realize on the other end of that
it's the same way, the same way. So I am
while I worry about different things, and I worry, don't
get me wrong, I am so grateful to the life
and the community and the people that I've met because
of a diagnosis that my son has a label that
people have and people look at them and look at us, and.
I don't care. But it's interesting.
It's really it's a blessing for myself because I could
only imagine what my life would have been like if
I didn't have Matthew.
I can't even imagine, you know, It's true.
Yeah, well, this has really been great. I appreciate you
coming on the show. Thank you, Oh the Pleasures, Allline.
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