Belqui Ortez Millili: An Autism Mom's Strength and Journey to Advocacy

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Thanks for coming on, No, thank you for having me.
Oh it's my pleasure. If you would, could you tell
us what first connected you to autism.
Well, I am an autism mom.
So I have almost seventeen year old he'll be seventeen
now in March, a son who is nonverbal autistic. He
obviously has very high needs. I mean we haven't had him,
you know, test it again. But last week tested him
he was like maybe twelve or so, and he was
more like a.
Three to four year old.
Maybe when it came to his abilities, you know what
we could I would say, test in see, so we
haven't done that again. I think he is all over
the place. I don't think it's just one age range
that he's in. I think there are certain things I
think he processes at an older level.
So that's why I'm like, no more of those.
Sure, can you take us back to the moment you
first realized something wasn't quite right with your son? Can
you take us to that moment when it became clear
that you had to take action.
Well, I have another son who is a year and
three months older than him. It's a very long story
the way that everything went down with us and our kids.
But my son was on the spectrum in nonverbal. He
was one of multiple babies that I was airy. So
he and one of the babies that were born were
born at six months gestation, so they came super super early,
and my daughter unfortunately didn't, you know, make it past
five days, and then he did.
They both got it.
Very interesting thing, but they both got brain bleeds in
the Nike you on the same exact day, right around
the same time, even though they were in different isolates.
Very very strange, but they did.
And then she ended up passing from hers and he
think she had a Grade four and he had a
Grade two. So we already knew that we would probably
encounter some issues.
You know, with him.
But then when he was he was developing quite well.
He was in the nick U four over three months,
but then once he came home, you know, we had
just the issues with digestion and hummy aches and so
we had a lot of those issues.
That we had to deal with with him.
But he seemed to be progressing around the births, not
the birth age, but what his birth should have been
when he was about six months or so. But then
when he was reaching like let's say he was like.
Nine months, and I remember my other.
Son was reaching milestones about six months that he hadn't
reached at nine. So then I immediately was like, Okay,
well Evan was doing this, Connor's not doing this. But
I just started really just really holding into the things
that was noticing were not happening at the time the
when it should be done. And I'm one of those
people who I like to research everything. So before I
even became a mom, because I had to do IVF
and all those things to become a mom, I was
very educated and I bought books about all sorts of
things that you could possibly imagine, and one of them
was about autism and learning the signs of autism and
other what would you say, developmental issues that your children.
Can have, So that actually helped me.
Also because I didn't see those with my first I
started to see those with my second. So then right
away I started asking questions to the pediatrician and say
I don't see this.
I don't see that happening. And of course they're saying.
Oh, well he was premature, Oh he's a boy, you know,
all the same kind of things that you hear A
lot of people say. So, yes, it was like a
little bit of a battle because nutritionians look at you
like you're crazy, because you want to give your in
some sort of diagnoses, and I'm like, I know that
something's not right. So yeah, so it took a while
for me to get the help I think he needed.
What do you think most people misunderstand about autism? Your
son's going to be what's seventeen or eighteen, He's going
to be seventeen now, okay, seventeen, Yeah, okay, so you've
gone through seventeen years of autism. What are some of
the things that you think people just don't get.
They don't get that there is a spectrum, even though
you hear about the autism spectrum.
I feel like people don't understand the spectrum.
Like every time I say I have a son on
the autism spectrum, they always think he can, they always
think he has a gift, they always think.
Of rain Man.
It's just it's a constant, like I don't understand how
people are not more educated about autism.
You know, I lived in New Jersey. Now we're in Arizona.
I'm a New Yorker.
But I felt that on the East Coast there was
a little bit more of an education around autism. When
I would have conversations, especially the last you know, like
maybe when he was like five or six, I felt
like people were a little bit more educated.
But then I.
Move over to the West Coast, and that's say this state,
And not that people here are ignorant by any means,
I just feel that there is less of an awareness
of what the spectrum is actually about. And of course,
because they continually change how we diagnose what we name
these diagnoses from you know, oh Asperger's, now Asperger's doesn't exist,
blah blah blah.
Now it's one, two, three, What level are they?
And then people are completely confused about these levels and
what they mean. I feel like, you know, my son
is level one, and my eighteen year old is actually
a level three, which is something I don't really speak
about because he is higher functioning and he has been
usually very private about this, and we've come to in
a place where he's more open about it. I don't
think they should be anywhere in the even though I
know there's a one in three one to three, I
still feel like they shouldn't be in the same categories.
They shouldn't be.
I just feel like and there should be some other
metrics for someone as high functioning as my other son,
who will get married, have kids, drives all those things.
In your bio, you describe yourself as an autistic mother
and advocate. When did that shift happen? When did you
realize that parenting alone wasn't enough and you had to
move into advocacy.
Well, for me, it was I would say he was
about maybe three.
My youngest was about three.
My other son didn't get diagnosed till he was I
think he was in sixth grade or so, so he
was a little older.
But my youngest I felt that I.
Handled, and I don't know if it was because I
kept fighting so hard to be heard and to be
you know, listened to about what I was, you know,
seeing within him that once I got the diagnoses, I
was lividly excited, like I was like so happy, which
is not the normal reaction. I was like, yes, yes,
now I can get help, you know, I can get
to call people. Now, I can get you know, help
from let's say, the insurance company and this, you know
all that. So I immediately just got to work and kind
of didn't process the actual diagnoses one hundred percent. It
was more like, I need to get him to help
right now, and I just kind of went right into it.
And I think that not that we all moms will
react the same way, but I felt like I just
wanted to help other moms kind of, you know, get
this news and say, okay, let me empower them to say,
you know, this is not the end of the world.
It's still the same child that you walked into this
doctor's appointment before they told you one hundred percent, same child.
Same struggles, same virtues, same everything.
Now you just know more about them and now you
know how to help them further better.
And a lot of the time.
If you catch this early on, you are able to
help your child even more so than if you would
have waited years, if you would have just stayed, you know.
So I decided I wanted to not just help other moms,
but get a life coaching certification. So I went and
got certified, and I did it with like a school
that it took me eight months to get through it.
So I was not like I wasn't going for a quick,
easy thing.
I was like, I wanted to make sure I got
like something that was legit and I could really help moms.
So that I became what we would call an autism
support coach. And I realized though once I started, that
we are spending a lot of money on things that
are not covered for our kids. Right, so we would
have speech T T oh T, like there were so
many different therapies, and then a lot of the time
insurance wouldn't cover everything, so that we would have to
cover part of it, or if your state had BDD
or something that would help you towards the cost, almost
never covered everything. So I was like, Okay, these parents
can't afford me. So that I was like, you know what,
I'm going to do it at no cost. And then
I just started doing it at no cost and just
talking to parents and you know, and that's what I
did for probably a couple of years.
But then I got burned out. I got totally burnt out.
I can totally understand that. That was actually my next question,
how did you handle that? Every mother? I have spoken
with gets burnt out about autism in some form or
some way. So how did you navigate through that burnout
so you could not only be in support of your son,
but also support yourself and all the others that you
were trying to help.
I honestly can't tell you. I think we are all.
I think our own biological makeup sometimes makes us a
little bit more resilient than other people. So I feel
because I was a daughter of immigrants, I was someone
who had to work from.
When I was very very young. I knew what it was.
Like to not be able to go a way to college,
to have to work, you know, through high school, have
to work through college, you know, in the city in
New York, you know, pounding that pavement, you know.
I feel like I was just.
Used to very hard work and very difficult life situations, right,
So this was just one more life situation that was
going to be difficult. So I just handled it the
best that I could. I feel that I had a
good network of support around me. My husband had a
good job, so I was able to stay home and
do whatever he needed.
To do for my son. So I think that was
obviously very very helpful.
But there was a lot of things that were really
hard to handle, like you know, smearing like you know,
coop smearing things like that when he was like little,
and you know, they get out of their clothes and
you have to find ways to put them in these outfits,
but then they find ways out of that.
So there was a lot of different things.
But for some reason I would cry and then I
would just be like, Okay, you cried, you got it
out of your system. In line, let's go do what
you're gonna do. And it was cleaning up whatever I
had to do. I just got it done.
And that was that.
I don't know if that's even the greatest answer, but
that's really how I dealt with it.
You know, I just didn't. I wasn't so all me
the whole time.
Sure that makes sense. Now, I'm glad you brought up
your husband. Within autistic families, there's about an eighty to
ninety percent divorce rate because of the struggles they go through.
Did it affect your family? And if it did, how
did you get through it?
A lot? A lot, and till this day it does.
We have completely different ideas of how to correct certain behaviors.
I am a lot more easy going a lot more.
Oh oh, you know, I don't know if it's because
I'm a mom, but I'm just that way. And then
my husband is a lot more like you know, oh,
he eats chocolate chip cookies and throws half a little
chocolate chips on the floor.
Now, let's get this little trash can and he has
to put it in the trust put and things like that,
where I'm more like, Okay, I'll just take a broom
and sweep.
It because I'm like, you know, I guess I'm dealing
with a lot more things, so I'm more tired, and
I don't want to deal with a lot of other things.
So he's more willing to deal with.
Those as I am just more like I got to
pick my battles.
And that's how we kind of work as a marriage.
And also I think it's a lot of talking, you know,
it's a lot of talking and understanding each other and
why we feel the way that we feel. And in
my case, it's like my thinking is these are the
best years of his life.
This is it.
I am going to pass away. My husband's going to
pass away. Hopefully our other son can help out with him,
but these are the best years, and this is what
I can make sure he is the happiest he can
ever be.
And that is what I focus on every single day.
It's his happiness that's really good. That's a great way
to look at it. What strengths do you see in
your family where you have to deal with autism and
everything that entails. What do you see for strengths in
your family that other people just may not understand?
Well?
What we have in strength is that we honestly are
in the way that we I guess, in the way
we communicate. I think we have to be more open
about things because like we are not open and communicate
about everything, then we have nothing, basically, is what it is.
What I can tell you is that a lot.
Of our friends who have kids that are typical, they
don't always see the blessing that they have. They don't
always see how they have all of these options that
we don't have. And that's what drives me a little
bit crazy sometimes because I'm like, God, like you don't
be like you can actually sit your child down in
like a rational conversation with them, and you choose not
to sometimes or you tell me and then you know,
So that's what I see actually see more of how
other people don't appreciate what they have.
Honestly, now we talk about autistic parents, we talk about
autistic kids, their identities they have. Then, how has this
changed the way you look at yourself as an autistic
mother who was doing what she needs for her autistic son.
Well, I see myself as way stronger than I ever
thought I was. I think that's actually the one thing
that I have gained from being announce as a mom
is if you would have told me all my life,
I was gung ho that I was not having children,
like that was my thing. No kids, I'm never having kids,
Like I'm gonna like travel the world and that's going
to be my wife, and you know, maybe I won't
even ever get married, but I'm definitely not having kids
Like that's who I was more focused on my career
and all those kinds of things. And then when I
decided to become a mom, I became a mom at
thirty three, so a little later, you know, for my age,
I'm fifty one now, I became a mom later. I
think it just like if you would have told me
then that this would be my life.
I would have said I could never do this.
I could never know freaking way, but for some reason,
you get the strength and you do it. It doesn't
make it easy, obviously, even if you have that mentality.
But the mentality that I did go into as a
woman in her mid thirties trying to have children and
also being told I cannot have any easily right that
having to do fertility treatments was I'm going to accept
whatever I'm being given as a mom and my first
born because I you know, I was thirty three. They
were like, oh, you know you have a high chance
of having a child down syndrome, all these different things.
Then they wanted to do the annuals and thesis and
all this stuff, and I'm like, nope, you know it
was party enough to get for ignant.
It took me three years. I'm like, I am not
letting you do an amnuo And they were like, but
you know if.
The baby had I'm like, nope, I'm not doing it.
I'll take whatever comes to me. That's what it is.
And I think that is a resolve that I know
that I had then at that moment of wanting to
become a mom.
Sure sure, now when people, your friends, your family, the
ones you help with your advocacy. Ten, fifteen, twenty years
from now, when they look back at the work you've
done for the autistic community, what do you hope they
say changed because you showed up.
Well, I hope it's more just awareness, just education surrounding
what it is like, especially when it comes to nonverbal children,
because I think that's absolutely the hardest part of autism
is when you have an autisay child who is nonverbal
and one that cannot take care of themselves. So it's
not just that they're nonverbal, because we know that there's
many nonverbal individuals that can type and all these things,
you know, and we're still we haven't decided he can't
type yet. We're still in that process of, you know,
where he's learning letters, all this stuff.
Let's go see if he can communicate through a device.
So we're still in a place where we're not saying
he can't do this or that. I'm hoping that What
people that meet me walk away with is you just
never give up. But you're also realistic, and you're also
are given a situation and you find the best opportunities
within that situation for yourself and for your child and
your family.
I just had a mother of a non verbal autistic
daughter on an episode just a couple of days ago.
She said, imagine putting a piece of tape on your
mouth and trying to communicate what it is that you want.
It's very obvious. A lot of people do not understand
what a mother of a nonverbal autistic child has to
go through.
Yeah, and what that does to a lot of us
is it becomes like a prison because you're a prisoner
in your home.
Even though people say.
Oh, you know, I'll watch him, You're like, oh, no, no, no,
you don't understand, Like there's like all these different things.
It's like he can't communicate one hundred percent. You're going
to be confused.
Even if you know my son can communicate through his
iPad with a prolocal to Go app but he doesn't
because we know him so well, like some she doesn't
even have to say anything, Like we have like almost
like a psychic connection to him. Well we kind of
know what he's looking for or what he wants, so
that by the time we kind of know and we're
almost always right, you know. So that's what I think
a lot of people don't understand, is like when you
have someone like that.
It's not as easy as oh, just leave them with
me for a couple hours.
There's so much that may happen in those couple of
hours that you have to know how to handle and
how to deal with.
There's a saying that people have different seasons throughout their lifetime.
What has been one of your more difficult seasons in
your journey? Then what helped you get through it?
To be honest with you, I think this is the
most difficult season, even though when you was younger there
was a lot of uncertainty because you don't know what's happening.
They keep saying they can talk by the stage, they
can do this, by the danger you know, and you're well,
you have all these hopes and dreams and whatever. I
think now as they get older is when you're becoming
more of like a sober like you're looking at this
more in a sober way, like this is it?
Like this is kind of it.
So then you know that there's not a whole bunch
more that can possibly change. So I would say this
is the most impactful time because this is the time
when he's going to be seventeen years old, he's almost
an adult. Now I have to start thinking about conservative
ship all these things, like it basically confirms that, Okay,
now for the rest of your life, this is your responsibility.
You're not going to have, you know, the empty nest
syndrome like this is this is it. So now you
have to make sure that every other plan involves this
individual always and forever.
Yeah, that's a very hard reality, but it is one
that we all have to look at.
Exactly.
So, looking back, what kind of support you wish you
had early in your journey to help guide you get
more information so that you knew exactly or close to
what you might be looking for in the future.
So I happened to be one of those people Like
I told you earlier that I researched everything before.
So I honestly had a lot more.
Of a doom and gloom vision of everything at the
very beginning. And I was someone who asked for a
lot of advice. I did moms groups, I did.
You know, I did it all.
I was involved, like you know, in autism awareness campaigns.
I volunteered for autism research. I worked with the Organization
of Autism Research just to just to be part of
a community raising funds for research. Like I was really
in the nitty gritty of everything while he was also
going through the nitty gritty of growing up and learning
to go to the bathroom and all those things. So
I honestly feel that I surrounded myself with a lot
of people that had kids in all parts of the spectrum,
So that was very, very helpful for me. What I
have noticed is that as they get older, those groups
kind of fall apart. And that's what I have noticed
because the kids kind of end, not end, but they
get to a certain point that there's not that much developing.
They kind of have their personality now, So I think
parents rely less on other parents of kids on the spectrum.
So now I.
Find it to be like if I have my friends
that I still have, our kids are older, so now
it's a lot less about autism.
It's more about what we're doing for ourselves.
You mentioned friends. This kind of popped in my mind.
So many people that I've spoken with over the last
couple of years, they've had friends they would do things with.
They all had kids. One had an autistic kid that
changed everything. There was a disconnect. The neurotypical family did
not fully understand the neurodivergent family. Did that happen to you?
Yes, And the reasoning behind that is because you can't
just go on a play date.
You know, your child can't sit and play.
With them like they can play beside them, right side
by side.
They can't play with them.
So that obviously makes that other parent feel like, well,
I need to hang out with parents that have kids
that can play with my kids, and then we can
talk and hang out with each other.
So you tend to hang out.
I didn't do even many play dates with the parents
and the kids that had aut to them because the
kids were never playing together. They were just in the
same room and we were all together chatting, but the
kids were out doing their own thing.
Wherever we were.
They were kind of doing their own thing, and some
of them would have a little bit of an interaction
here and there. But we realized that it was better
for us to meet defarately on our own the kids
with our husbands. The kids were getting their time at school,
you know. Connor started obviously with even before three years old.
He started like at.
A daycare for special needs children that he would go
in for several hours and then I would have his
therapy take place there and then also at home, but
he would be able to be around other kids there
and then come home do more therapy at home. And
then he went into like a more of a typical
school that had an autism program until we moved into
an autism school. So in reality, having the parents that
we have the typical kids like that kind of fell off,
and then it became more about parents that you could
understand each other and that you were of support to
each other.
Where do you feel the conversation needs to go about
autism over the next five to ten years.
I feel that's a tough question because I feel that
the conversation needs to be a lot more awareness when
it comes starting literally at the level of kindergarten. And
that's one of the reasons why I love the Organization
for Autism Research is because they have booklets, They have
invested a lot in educating.
Not just children in schools, and they have.
Age ranges for each one of their educational packets.
They also do siblings.
They also help with work, helping the adult population find work.
I think that is what we need more or complete awareness.
What kind of jobs can our kids do even if
they're non verbal, Maybe they like to stuff envelopes. Ooh
the heck Nos, there's so many things that they can do.
It's really starting from the very bottom so that when
your child, let's say, you want to have a kid
that's in an all inclusive environment, right that maybe the
kids who are typical don't look at them in a
weird way because maybe my son can't speak, but my
son can absolutely take in the energy of other people.
So when your kids are looking at them or treating
them a certain way or whatever, like, they have to
feel that energy. So I feel like it's really all
dill about awareness. And then as they get older, opportunities
to be able to do things outside of school that
help them learn some skills not just in school, but
outside of school that prepare them for a little later
in life. Even if it's menal tasks, even if it's
a small thing, it makes them so happy if it's
something they enjoy.
For first time listeners that are just starting to find
out about autism, what do you think is one of
the more important things they learn? As you know, when
they first find out their child is autistic, it is overwhelming.
They don't know what to do. So many people telling
them what they need to do, what do you think
is the most important thing they find out so they
can take that path, learn what they need to do
to make their journey a little easier to move forward
in helping their child.
So that is actually a lot of what I did
when I did my coaching was literally coach moms whose
kids were just diagnosed how to navigate the journey of
I've just got this diagnosis from my son.
What do I do? I am completely overwhelmed.
So then what I would do is tell them, Okay,
the first step is they're.
Going to tell you.
They're going to give you the whole diagnoses and obviously
the report.
They're going to tell you what therapies they need. Now,
let's see what are the availability of services in your state.
Let's start there, because even though you think I have insurance,
there are states that can actually pay one hundred percent
of your childs You know, we're in Arizona right now,
which I did not know because we were living on
the East Coast when he got diagnosed. For example, here
in Arizona, the DDD, once you go into the DDD
and you apply, once you get the diagnoses, you apply,
you have your diagnoses, then they accept you in then
you go in and you fill out for long term care,
especially if they're nonverbal still and long term care is
part of the DVD, So there they'll give you the
services for speech, for PTOT all of those things right everything,
and then once they approve those, you get all of
those services at no cost to you.
They give you certain amount of hours all of that.
Not only do they do that, but they also give
you a certain amount of hours depending on your child's diagnoses,
level of arrestit and habilitation hours. So you get monthly,
you get yearly rested hours, you get weekly have hours.
So that is somebody coming into your house helping you,
like let's say fifteen hours a week helping you with
teaching them how to use the bathroom, how to wipe,
how to rest your teeth, how to comb their hair,
all of these different things. But a lot of people
don't know that these services are available to them. So
it's basically look into what's available for you. I have
never had to touch insurance. We have insurance through DDD
here in Arizona, So he doesn't have an insurance like
my husband and I and my other son have. It's
DDD one hundred percent covered like every single thing. So
that's the first step. Find out what your state can
offer you. Then if you can't get everything covered, then
go to your insurance see what's covered, what's that covered,
what can afford It's a long list of things, but
if you have someone helping you navigate that list, you
know saying, Okay, let's tackle this list in the next
two days. Like everything, take your time and don't overwhelm yourself.
You can't do it all in a week. It's gonna
take time. Appointments are gonna take time. Don't think that
this is just happening to you. It's happening to everybody.
Sometimes appointments take months to be able to get with
a specialist after the appointment and the diagnoses, So it's
more about patience and just educating yourself while you're waiting.
Yeah, good information. What do you think is important for
listeners to hear about where you are in your life
right now? And what do you want them to understand.
What I'm doing right now at this stage of my
life is I'm past the time where it was all
about my son. I am in a stage of my
life now that I am also taking care of myself
and my family.
And all those things that I want to do.
So work towards the point where you feel comfortable enough
to pick up all the things that you love to
do that maybe you weren't doing all the way because
you are concentrating on the needs of your child. Build
yourself a village of people who will be there for
you so that you can go travel and they can
help you with your child, or that you can go
to dinner with your husband to keep that relationship strong.
So it's really all about to get to the point
to where you have a life that is that is
fying to you and it's not all about autism, and
that your life doesn't have to be about that. When
you're out with people, you're not just talking about autism,
and then people are like, oh my god, you know,
Belpy only talks about autism when we're together. You have
to know when and where is the right time and
work towards that that you are independent of that as
a human being, as a soul.
Well, this has been great, great conversation, great information. Thanks
for taking the time to join us today.
Thank you so much.
I'm hoping I got a lot of points that are
useful for people.
Absolutely, it's been great. Thanks again, thanks for taking time
out of your busy schedule to listen to our show today.
We hope you enjoyed it as much as we enjoyed
bringing it to you. If you know someone who has
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