Ali Carbone: Journey of a Sibling: Embracing the Challenges of Growing Up with 3 Autistic Brothers

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.
Our guest has such a story to tell. She has
three autistic brothers. She's just written a book entitled What
Are You Looking At? Ali Carbone joins us today and
I'm just so happy to have her on the show.
Thanks for coming on, Ali.
Of course, I'm excited to be here. This is my
first ever podcast.
Wow, that's awesome and I am truly humbled that you
picked this one to be your first podcast. So let's
jump into it. I understand that you have three brothers
that are autistic.
Yes, yes, I like to say I always say hat
trick when people ask me about my little situation.
I was actually I went to like this sibling meet
up a couple.
It was like a week ago and she was like, oh,
you have you have brothers, you have a brother on
the spectrum.
I was like, no, no, I got three.
And the look like the looks that I got from
people when they hear that is always like like such hard.
It makes me laugh, like I can't not like every time.
It's almost like if you had a really bad injury
and you're like, oh, yeah, I got it in a
shark fight. Like I almost feel like that's the reaction
I get every time I tell my story. But yeah,
that's that's that's who I am, That's who I pride
myself to be. And I think that's also kind of
the preface of this book is that I consider myself
the sister of three autistic brothers.
I don't consider myself Ali carbon.
That's really interesting. That's quite quite a story to tell.
Actually, that's the jump off of my story, is that, like,
my life has been lived for three other people, and
that's a badge that I am very proud of but
have Now you know.
I turned thirty two years ago.
I just turned thirty one, like, and I realized that
maybe it wasn't a badge, Maybe it was a shield
that I was trying to protect myself with and I've
realized that there is a large group of people out
there that you know, go through the same things that
I do, and we're not spoken about because we're not
the ones that you know, we're not the disabled ones,
we're not the ones that need the extra help. But ironically,
when we're raised in these situations, we end up needing it.
So are you in a position now where you're still
taking care of your brothers or what's what's happening there?
No, So my three brothers are actually in two separate
group homes.
When I was.
I was a end of sophomore year going into junior
year of college. Three spots opened up in a children's
resident residential program, probably like fifteen minutes away from my parents' house,
and it was like right on the beach, and it's
through the school that they went through, and that's like
super super rare for three spots to open up. My
youngest was eleven at the time, so obviously not ideal.
My oldest was what was he like, probably sixteen seventeen,
So like you know, I was in cone or No,
he was probably eighteen, So it was becoming time for
him to go into a group home. Anyway, and they
my mom and they said, you know, we have three
spots in this house, do you want to put them
all in? So so, yeah, she took that opportunity because
that basically guarantees them housing on Long Island for the
rest of their lives.
So that must have been a pretty tough decision at
the time.
It was really a decision that she made for me
because that's a children's program that they could only be
there until they're twenty one.
So my oldest Michael, he was.
There for, you know, for four years, and then the
two little ones, Anthony and Luke, were there for you know,
almost five and now all three of them have officially
aged out. My oldest Michael lives in one group home
that's like twenty minutes south of my parents, and then
the two littles moved into a group home that's actually
like forty five minutes out east a little further, but
kept their same kept the exact same house, with the
exception of my oldest brother because he eached out years
before them, same housing manager, not you know, not the
same staff because it was so much further. But yes,
all three of them are in group homes now, so
I definitely have a different I have a different experience
and a.
Lot of siblings.
I think there are a lot of siblings that are
you know, they're responsible for the day to day care.
I'm fortunate enough to have a mother that took you
know that it wasn't a risk. It was another sacrifice
because think about how hard that must have been to
put your eleven year old baby in a group home,
but was also doing that for her, you know, her
eighteen year old baby at the time, who she knew
would not be able to handle all of.
That on her own.
Wow, that's pretty awesome of what she did for you,
because a lot of people might not have been able
done that. Yes, so tell me a little bit about
your brothers. You've got three of them, all autistic, and
I'm sure that each one of them are unique to them.
I like to say that this spectrum is represented beautifully
under my roof, because it really is.
They all are on different levels.
So Michael's two years younger than me, so that would uh,
that would make him Oh my god, he's almost turning thirty.
He's twenty nine. Michael is complete. He's the lowest and
the lowest lowest functioning. So this is like also not
like this is a conversation. People don't like high functioning
low functioning labels. I was six years old when my brother,
you know, or I was four years old when my
oldest was diagnosed, so I don't know like the new
terms like this is how I refer to it. You know,
Michael is the lowest functioning, so he's completely nonverbal. H
He is also completely blind and epileptic. The blindness didn't
happen until till two thousand and eight, so I was
a sophomore in high school, so he, you know, would
have been in middle school. Like my parents just noticed,
like they would hand things and he'd start like grabbing
for it, like and it was like a slow progression.
But because he's nonverbal, he can never say, hey guys,
I can't see anything. And you know, between neurologists and
with him being nonverbal and so low functioning, it's so
hard to get even get a doctor that will see him,
you know that and examine him. Like Michael, my oldest
gets put under general anesthesia to have his teeth cleaned.
Every year.
Wow. That's uh, that's very rough and and and I'm
sure just overwhelming for your parents and and you had
to go through that as well. So you said you
had every level pretty much covered, So how are the others.
Well then yeah, so then Anthony Anthony is super verbal,
super social, but very very bad OCD. So it like
makes it very hard for him to function in this world.
You know, Like he also is terrified of dogs. He
loved dogs when I was younger, and I brought one
of my best friend and puppies over to meet him,
and he like nipped him in the eye and ever since,
ever since then, if he sees a bee, it's like
he screams.
Bloody murder, And like, I don't know what it's like
for you.
In Nashville, in New York, everyone looks at dogs like children.
So like, and especially I live in the city, you
can't go to a restaurant without a dog being next
to you. So like, I can't take my most social
and most verbal brother pretty much anywhere.
He's so terrified. And that's not it's also not a
dog person thing. He's got bad OCD.
But you know, he he'll have a conversation with you,
Like when you look at my social media, that's the
one that I'm always sharing.
He loves saying he loves to dance.
He's a performer, he's dramatic, you know, he's he's the star.
Of the show.
And then you've got Luke, my baby, who is two
years younger than Anthony. He is very, very smart, but
he's not social and not like he's verbal, but only
when he wants to be. So like if we asked
him quayth he'll answer it for you, but he really
likes to kind of do his own thing.
He's definitely like a solid mix.
Okay, So you've got three brothers, each one of them
have been diagnosed autistic. So as you was growing up,
was that discussed with you and did you have to
be told why your brothers were a little bit different
from you? What was some of the conversations that might
have gone on far as you understanding what autism is.
I wish that I could answer that for you, but
I cannot, Like it's in me, like we never had
that conversation.
It's funny.
So like when I started writing my book, I put
together a book trailer because I crowdfunded, like the money
for the actually to write it for production. So I'm
going through all this old family footage that my dad
sent me old home videos and peppered in there was
Michael's diagnosis video and it's it's the video that one
of the therapists asked my parents to take of him
displaying like ticks, early kind of signs. And you see
in the video clip of me like, i keep trying
to get in front of the camera. I'm like, and
my mom is getting frustrated and she's like, Ali, please, like,
and she's getting angry because they're trying to figure out
what's wrong with my brother. Like there was never a
conversation with me. I mean I was four years old.
Maybe there was, remember, but for me, I've always just
been protector.
So basically you grew up not knowing, but you knew
they were different, but it's still was one of those
things that you didn't have to take and be explained to.
You just accepted it and moved on.
And I wonder if.
That's because I didn't have any other typical siblings, Like
maybe if I had other typical siblings, it'd be like, well,
why is this person and not this? But for me,
it was just Okay, I'm here these this is what
my brothers look like, this is what
brothers are to me doing well.
That just shows you that basically you grew up where
autism was the norm. It wasn't looked at completely different
because you had to live it and be with it
with your family.
Yes, autism, autism is normal.
And I'll tell you autism is so normal for me
that I cannot look at a word that has a
and you in it and not see the word autistic.
Wow, that's that's really good. That speaks very highly of
the way that your brain functions as well. So here
you are in high school trying to have a social life,
and did you have any issues with anyone looking at
your family a little bit different because you do have
three autistic brothers or did did everything just go along
relatively smoothly?
Like I definitely remember.
Like, there's one thing I have to say is that, like,
regardless of my family's situation, my house was the house
that you went to hang out at. I don't know
if that's because my parents wanted me to have like
the most normal life as possible or maybe like my
house was filled with sensory toys and we had a
big backyard with a pool because that was all, you know,
good for the boys. But but yeah, I mean, like
I definitely have one specific memory, like it was I
don't know, maybe it was like my twelfth birthday party,
eleven twelve, maybe younger. It was my SpongeBob theme birthday party.
I remember too. I saw two of my girlfriends laughing
at my brother like slap like flapping around doing his thing,
and we were kids, and like I never said anything
to them about it. But that's definitely something that's stuck
in my head. But you know, a better story actually,
uh like one that I actually like made a difference
with my best two of my best friends wanted, my
very very best friend, her and I did a euro
trip together after college, and retard is a word that everyone,
like my generation millennials use retard as a descriptor in
way that boomers may have said, oh that's gay, Like
that was the word, right.
And it didn't really.
Affect me, un like I used to use it myself.
And then there's something kind of flipped. And so after college,
you know, we're driving around and I'm in Europe with
my two best friends and they just keep saying retarded.
They keep saying retarded, just in normal conversation, and I
stopped them, And this was probably because I was overtired
and just in a bandon you.
We're in the.
Fifth country by now, and I stopped and I said, guys,
you realize your best friend has three autistic brothers and
you continuously use the word retarded, like would you call
a black person the N word? No? Like? And from
that moment on those two people, I've never heard them
say that word.
Since.
That's a great story. So that just shows that all
we have to do is give a little understanding and
hopefully it can change people's minds a little bit. Now,
with that said, going through high school and college, there's
always you know, certain people that tend to create problems,
They tend to bully a little bit, or just try
and impose their will on others. Did you ever run
into any situations like that at all?
I think, well, no, I definitely dealt with a lot
of bullying, like myself, like because I was like this
Italian girl in a very Irish neighborhood at the time,
so I was like darker and hairrier and whatever. I
definitely have I definitely did have a lot of out
in public situations where I had to fight people for
my brothers.
Never around my friends.
So like in my book, like the beginning of my book,
like I talk a lot about like getting kicked out
of the Pinocchio Cafe world because people were staring and
I lost my mind and I screaming, and.
And I have you know.
Of me fighting with two little girls at my beach
house because they were pointing and laughing at my brothers.
I've had instances where my oldest Michael was having a
meltdown and a diner and he headbutted me in the
middle of the diner while I'm trying to get him
out to the van, and everyone's looking at him and
pointing at him, and I turn around and I start
screaming at everyone else. Like I definitely have like I'm
always in defense mode, Like I'm always I'm always looking.
I don't want to say I'm always looking for a fight,
but I'm always I'm always ready to like confront like
what feels like injustice.
I hate being stared at, Like that's the what do
you at?
You know?
Yeah, I get that. So we've covered what you've kind
of went through during your affirmative years in high school
and college. But you've got three brothers that are autistic
but you have parents that have three sons that are autistic.
I know that. Uh, you know there's a difference between
the mother and father. Lost this toss time to father
will deal with it a little bit more internally. How
did your mother handle that?
She I like you could if you look at a
picture of her license from like when Anthony was diagnosed,
like she was completely gray like wooden't Colt color her hair,
like completely depressed, like like yes it happens once, right,
And then she's upset about Michael. And then she has
another kid because she doesn't want me to be alone
with Michael and haha, jokes on you, he's autistic too.
So now now she's depressed. Sh did I just do
this again?
Uh?
And I'm giving I'm giving my daughter more.
And then she had Luke that was a that was
a surprise, but thought, great, maybe this will be you know,
Ali's typical sibling. And again, so I think she had
to go through it three times. It was never ending,
and yet it affected me, like I wrote in the book,
And I don't know if I don't remember if it
made it to publishing, because I've read it so much
that I can't remember what made it what didn't.
But like when I was younger.
When I would come home, I would yell mom up
the stairs, and if I didn't hear her, like if
she didn't answer me, like I had a serious I
had a serious fear that I was going to find
her hanging in her closet. That's like, that is a
childhood memory that I that I have and it doesn't
go away. And sometimes I wonder, like why did I
feel like that? Like she was she was loving to
me like she My parents were not. They did not
ignore me, they did not. I think it's just watching
her just feeling her sadness.
Like I think.
I also like to say, I call myself an mpath
like I have a hard time not.
Embodying what people feel around me.
And I think that's because of the environment that I
was raised in, and it was hard. It was hard
for her, and it's it's an ongoing thing for her.
She never she's to this day like she's not just
guilty about them now, especially with this book and like
with me moving in the house and starting therapy, she's
guilty about me. And it's like it's just like never
ending compounding sadness for her.
Well, that's just a lot of weight to carry on
anyone's shoulder, and I'm sure that she did the best
that she could given her situations.
This is where like the glass children conversation kind of
comes into play, And like I didn't learn about that
term until after I wrote an entire book about being
a glass child, And if you don't know what it is,
a glass child is basically any person that's raised in
a home with a special need sibling, and a special
need sibling doesn't need to be disabled. It could be
someone that's troubled, that has a drug addiction, that's sick,
anybody that's going to take, you know, more attention.
That's a lot to take, especially at a young age.
And being a kid, there was really not a lot
of room for me to be a kid. Like what
I like to say, I describe our our, my childhood,
my family life as three on three. I wasn't a kid.
It was the three of us versus the three of them.
It was always who's got Anthony, who's got Michael, who's
got Luke? So so yeah, that's that was kind of
That's kind of how it went. There was Uh, I
actually went back my dad the year that my brother
lost his sight. My dad wrote a letter for Christmas
to send out with our Christmas picture, and I read
the blurb he wrote about me and and he wrote that,
you know, Ali were so proud of her. She's so
responsible and you know she she does you know, her
studies and her her activities and her friends, all with
little prodding for us, like so responsible. Like I think
my biggest thing was that I had to I don't
want to say raise myself because that's not fair to
my parents, but I had to, you know, I had
I had to be a third adult from the time
I was probably six years old.
Well, it's it's it's a situation of where where you
you like you said three versus three You know, you
you have to stop and remember you know you're you're
still a child, okay, but yet you're taking on all
these responsibilities of an adult to help your parents with
three kids that that are that are that have issues,
you know, in dealing with life.
Yeah, and like even if it's not like the responsibility
per se, like I, you know, I couldn't drive them
or I couldn't you know, I if I was too young,
I couldn't stay home with them.
But it's like that.
It's that mental portion like I had no innocence, Like
there was no sense of ignorance is bliss in my life?
Like I was not free.
I was not free to grow and develop in my
own brain without like the harsh real like without knowing
like what life was like, you know, And I think
that's what that's what really did me in It's not
even like my parents had me wiping ass, which like, yeah,
I definitely helped them go to the bathroom. I definitely
would help get them ready. I definitely would do their
meds if my parents needed. When I got older, I
would drive them back and forth and do.
Drop offs so the group homes.
But for me, the biggest impact was not being free
to develop in my own mind as a kid. I
was always ready for something bad to happen.
Yeah, that's really tough to take. And I'm sure that
a lot of people that are listening to this can
actually probably relate with you. So we've talked about everything
that you've gone through. We've talked about your mom and
how was your dad with this.
My dad is the polar opposite of my mom in
he just he.
Just deals with a smile.
I like to call mister it's all good, Like he
definitely he definitely, I'm sure. I'm sure he was sad,
but I never saw him cry over it. I think
my dad's way of dealing with it was being a
very very active partner. So like my dad did the
showers and got them ready for bed at night, and
my dad did the lunches in the mornings. My mom
did the notebooks and my dad did. My mom did
the scheduling for the ABA, and my dad did the cooking,
Like it was very much a partnership. I think the
way my dad dealt with it was by being the
best possible partner he could to.
My mom, who he knew was going to steer the
ship regardless. You know, there was never.
Yeah there we may maybe also I think how my
dad dealt with it was also by throwing himself into.
Me, like you know, daddy's little girl, regardless.
But I think he definitely knew that my mom couldn't
show up so like my soccer game or like whatever
games after school because she had to be home with
the teachers for the boys. So like I like to
say that like the boys and I both had our
own parental representatives. My mom was the boys, my dad
was mine. But I am seeing now there's so much
like that's coming, so much like healing and like just
visibility that's coming out of this book, like my dad,
especially my relationship with him. Like after he read it,
he sent me a long message that there's just so
much he didn't realize was going on. It's amazing that
they're and like they are. They just celebrated their thirty
thirty sick they've been together for thirty six years. They
just celebrated their thirty first.
No, I'm lying.
Third, I think they just celebrate their thirty six wedding
anniversary something Like they've been together for like and they're
like in love love, Like my dad calls her mama.
They're always kissing.
He's very very affectionate, like he wants to be around her,
Like this is like this is not a man that
like stays at work to be away from his wife.
Like they they're very in love.
And I think that's probably the only reason that our
family survived.
That's a really great story and I'm glad to hear it.
I'm sure my listeners will be as well. So tell
me a little bit about when you moved out and
you know, went on your own.
I moved out of my parents' house and I realized, like, wow,
I have no identity outside of my brothers and my
family situation. Like so, I you know, I go into
a word depression that I probably ever experienced in high
school that I never really realized I was experiencing, and
I'm figure out.
How can I find my happy again?
And I was a dancer my whole life, Like that
was how when my brothers were in after school sessions,
when their ABA people were over, I was at cheerleading
and then I went to dance until eleven o'clock every night,
and that's what kept me saying that was for me.
So I found a dance studio and I started dancing again,
and I would go by myself to this class as
like a twenty eight year old, and this girl came
up to me and she was like, hey, my name's Alana,
Like come sit with me, and we just became friends.
And one night I was driving her home from dance
and she told me that she was writing a poetry book.
I told her, I was like, what do you mean,
You're writing a book? Like I've always wanted to write
a book.
Well, that's a perfect segue. So let's talk about your
book a little bit and give us a little insight
on what it's about.
This book isn't about the boys. This book is about me.
I feel like the biggest thing for me in writing
this what's that? And this is gonna sound ironic, like
I wanted to give a voice to the voiceless. And
in this situation, the voiceless is not my autistic brothers.
They can't speak.
It's like the siblings that we can speak, but we
can't because there's other things going on that's more important.
And I think that, like it's so important for parents
to like I almost like I say, this book is
for siblings, but I also feel like this book is
for parents of anyone.
And educator is just.
That, like like you need to pay attention to the
people that don't necessarily seem like they need enough, because
if someone takes a back seat in the future, they're
going to need everything they didn't get, you know, And
I'm learning that now Like I was I was at
six years old, I've was a thirty year old and
as child, I was an adult and now I am
a full blown adult and I feel like a child,
Like every every bad thing that happens, like my reactions.
Sometimes I feel like I'm having a tantrum. Sometimes I
feel like I don't know how to deal with things.
And it's because I was raised. My brain was trained
in survival mode, you know, and you know, and it's
and this isn't about not even about parents.
This is about community.
Right. Everyone says it takes a village to raise a kid, right,
where was the village for me? Like, you know, we
had all these I come from a very very large
Italian family, and bless them.
Since this book has came.
Out, I have gotten so many messages from aunts and
uncles apologizing, you know, from like older people in my
life for not seeing me or whatever. But like the
times that I felt the most seen were like when
the teachers were around, because they treated me like like
they wanted to know about my life. Like they didn't
talk to me about being a sister. They were my person,
you know. And I think, like my book is about
the village, it's about like your friend has an autistic
kid and a typical kid.
Maybe you should spend some.
Time with that typical kid once a month and make
them feel like they're just as important because at the
end of the day, your friend that has that disabled
child needs to give that disabled child their attention help them.
That's a great information. Now, I know some of our
listeners that may not have autistic children do want to help,
and they'll see someone with autistic children, but they just
don't know how to help. So do you have any
suggestions on how they can actually help them.
You can help by being normal and by like helping
the typical people in those situations still have those typical experiences,
you know, like I like I never we went on
one family vacation, Like I think about like all my
friends they always used to go on family vacations. Like
if someone maybe would have invited me with their family,
like my cousin they took me. They took me on
a cruise one year, like with their family, and I'll
never forget that, Like I have the greatest memories from
that trip. Like there's the smallest things, like when you
think you don't know how to.
Help, you do Uh, that's so good to hear. We've
covered so many good things here today. So what's the
number one thing that you'd like to have people remember?
My number one goal is to highlight the down because
everyone loves the Everyone loves Anthony. He's the star, he's beautiful,
he's got you know, he loves to sing and dance,
and he loves to be on camera and talk, and
he's a feel good story. Nobody ever wants to talk about.
Michael.
Yeah, I get that, and I'm just so glad that
we was able to cover everything that we could. And
just thank you for coming on today. It's been a
real pleasure to have you.
Thank you so much, Maria. I had so such a
great time.
Thanks for taking the time out of your busy schedule
to listen to our show today. We hope that you
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