April 6, 2026 • 31 mins
Belqui Ortiz Millili on Parenting a Nonverbal Autistic Teen, Advocacy, and Building Support
Host Tony Mantor welcomes Belqui Ortiz Millili to Why Not Me: Embracing Autism and Mental Health Worldwide.
She shares that she is the mother of a nearly 17-year-old nonverbal autistic son with high support needs, born extremely premature at six months gestation, and describes early concerns when milestones lagged compared to her older child.
She recounts pushing for answers despite being told delays were due to prematurity or gender, and discusses common public misunderstandings about autism, including lack of awareness of the spectrum and confusion over changing diagnostic labels and levels.
She explains how her son’s diagnosis led her into advocacy, including earning a life coaching certification to support newly diagnosed families, initially offering help for free after seeing the financial burden of therapies not fully covered by insurance.
She talks about burnout, the impact autism-related stress can have on marriage, and how she and her husband navigate different parenting approaches while prioritizing their son’s happiness.
The conversation covers isolation experienced by families of nonverbal autistic children, shifting support networks as children age, and her current challenges planning for adulthood, conservatorship, and lifelong caregiving responsibilities.
She emphasizes the need for broader education and inclusion starting in early school years, more opportunities and job pathways for autistic people, and practical guidance for parents on accessing state and insurance services—citing Arizona’s DDD supports, long-term care, therapy coverage, and respite/habilitation hours.
Belqui closes by encouraging parents to build a village, protect their relationships, and reclaim parts of their own lives beyond autism while continuing to support their child.
Welcome to ‘Why Not Me’ — Autism & Mental Health Stories That Connect Us
Meet Host Tony Mantor + Today’s Guest: Blquuii Ortiz Millili
Belqui’s Autism Journey Begins: Her Nonverbal Son & High Support Needs
Early Signs, Premature Birth, and Fighting to Be Heard by Doctors
What People Get Wrong About Autism: The Spectrum, Stereotypes, and ‘Levels’
From Parenting to Advocacy: Becoming an Autism Support Coach
Burnout Is Real: Resilience, Support Systems, and Surviving the Hard Days
Marriage Under Pressure: Different Parenting Styles & Keeping the Family Together
Identity and Strength: How Autism Changed How She Sees Herself
Nonverbal Autism Realities: Communication, Safety, and Feeling ‘Trapped’ at Home
The Hardest Season: Teen Years, Adulthood Planning, and Conservatorship
Support, Community, and Friendships: What Helps (and What Falls Away) Over Time
The Next 5–10 Years: Awareness in Schools and Real Opportunities for Autistic Adults
Newly Diagnosed? First Steps, State Services, and How to Avoid Overwhelm
Taking Care of Yourself Too: Building a Village and Reclaiming Your Life
Final Thanks + How to Share the Show and Get Involved
INTRO/OUTRO: T. Wild
Mantor Music BMI
The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for info
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Episode Transcript
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SPEAKER_01 (00:06):
Welcome to Why Not Me, embracing autism and mental
health worldwide.
Hosted by Tony Mentor.
Broadcasting from the heart ofMusic City, USA, Nashville,
Tennessee.
Join us as our guests sharetheir raw, powerful stories.
Some will spark laughter, otherswill move you to tears.
(00:30):
These real life journeysinspire, connect, and remind you
that you're never alone.
We're igniting a global movementto empower everyone to make a
lasting difference by fosteringdeep awareness, unwavering
acceptance, and profoundunderstanding of autism and
(00:52):
mental health.
Tune in, be inspired, and joinus in transforming the world one
story at a time.
Hi, I'm Tony Mantor.
Welcome to Why Not Me, EmbracingAutism and Mental Health
Worldwide.
If these conversations resonatewith you, I invite you to tap
(01:12):
follow.
It helps us to reach more peoplewho may need to hear them.
Thanks for being here.
Joining us today is Belki OrtizMalili.
She is a voice of strength,resilience, and hope for
families navigating theirjourney of autism.
She has dedicated her life toempowering others through
education, compassion, and realconversation.
(01:35):
Through her work, she helpsfamilies move from isolation to
understanding and from overwhelmto purpose.
She has a great story, so beforewe dive into our episode, we'll
be right back with anuninterrupted show right after a
word from our sponsors.
Thanks for coming on.
No, thank you for having me.
Oh, it's my pleasure.
If you would, could you tell uswhat first connected you to
(01:57):
autism?
SPEAKER_00 (01:58):
Well, I am an autism mom, so I have almost
17-year-olds.
He'll be 17 now in March.
Son, who is non-verbal autistic.
He obviously has very uh highneeds.
I mean, we haven't had him, youknow, tested again, but last we
tested him, he was like maybe 12or so, and he was more like a
three to four-year-old, maybewhen it came to his abilities,
(02:22):
you know, what we could, I wouldsay, test and see.
So we haven't done that again.
I think he is all over theplace.
I don't think it's just one agerange that he's in.
I think there are certain thingsI think he processes at an older
level.
So that's why I'm like, no moreof those.
SPEAKER_01 (02:37):
Sure.
Can you take us back to themoment you first realized
something wasn't quite rightwith your son?
Can you take us to that momentwhen it became clear that you
had to take action?
SPEAKER_00 (02:48):
Well, I have another son who is a year and three
months older than him.
It's a very long story, the waythat everything went down with
us and our kids.
But my son, who is on thespectrum and non-verbal, he was
one of multiple babies that Iwas carrying.
So he and one of the babies thatwere born were born at uh six
(03:09):
months gestation.
So they came super, super early.
And my daughter unfortunatelydidn't, you know, make it past
five days.
And then he did.
They both got a very interestingthing, but they both got brain
bleeds in the NICU on the sameexact day, right around the same
time, even though they were indifferent isolates.
Very, very strange, but theydid.
(03:29):
And then she ended up passingfrom hers and he, uh think she
had a grade four and he had agrade two.
So we already knew that we wouldprobably encounter some issues,
you know, with him.
But then when he was, he wasdeveloping quite well.
He was in the NICU for overthree months.
But then once he came home, youknow, we had just the issues
(03:51):
with digestion and tummy aches.
And so we had a lot of thoseissues uh that we had to deal
with with him, but he seemed tobe progressing around the birth,
not the birth age, but what hisbirth 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 otherson was reaching milestones
(04:15):
about six months that he hadn'treached at nine.
So then I immediately was like,okay, well, Evan was doing this,
Connor's not doing this.
I just started really, justreally holding into the things
that I was noticing were nothappening at the time, the when
it should be done.
And I'm one of those people whoI like to research everything.
So before I even became a mom,because I had to do IVF and all
(04:37):
those things to become a mom, Iwas very educated and I bought
books about all sorts of thingsthat you could possibly imagine.
And one of them was about autismand learning the signs of autism
and other um, what would yousay, developmental issues that
your children can have.
So that actually helped me alsobecause I didn't see those with
my first.
(04:57):
I started to see those with mysecond.
So then right away I startedasking questions to the
pediatrician and saying, I don'tsee 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 thesame kind of things that you
hear a lot of people say.
So uh yes, it was like a littlebit of a battle because
(05:18):
nutritions look at you likeyou're crazy because you want to
give your kid some sort ofdiagnosis, and I'm like, I know
that something's not right.
So yeah, so it took a while forme to get the help I think he
needed.
SPEAKER_01 (05:29):
What do you think most people misunderstand about
autism?
Your son's gonna be what, 17 or18?
SPEAKER_00 (05:36):
He's gonna be 17 now.
SPEAKER_01 (05:38):
Okay, 17.
SPEAKER_00 (05:39):
Yeah.
SPEAKER_01 (05:40):
Okay, so you've gone through 17 years of autism.
What are some of the things thatyou think people just don't get?
SPEAKER_00 (05:47):
They don't get that there is a spectrum.
Even though you hear about theautism spectrum, I feel like
people don't understand thespectrum.
Like every time I say I have ason on the autism spectrum, they
always think he can speak, theyalways think he has a gift, they
always think of Rain Man.
It's just, it's a constant,like, I don't understand how
(06:08):
people are not more educatedabout autism.
You know, I lived in New Jersey.
Now we're in Arizona.
I'm a New Yorker, but I feltthat on the East Coast there was
a little bit more of aneducation around autism when I
would have conversations,especially the last, you know,
like maybe when he was like fiveor six, I felt like people were
a little bit more educated.
(06:29):
But then I move over to the WestCoast and let's say this state.
And not that people here areignorant by any means.
I just feel that there is lessof an awareness of what the
spectrum is actually about.
And of course, because theycontinually change how we
diagnose or what we name thesediagnoses from, you know, oh,
Asperger's.
Now, Asperger's doesn't exist.
(06:50):
Uh blah, blah, blah.
Now it's one, two, three.
What level are they?
And then people are completelyconfused about these levels and
what they mean.
I feel like, you know, my son isa level one and my 18-year-old
is actually a level three, whichis something I don't really
speak about because he is higherfunctioning and he has been
usually very private about this.
(07:12):
And we've come to a place wherehe's more open about it.
I don't think they should beanywhere in the, even though I
know there's a one and three,not one to three, I still feel
like they shouldn't be in thesame categories.
They shouldn't be.
I just feel like there should besome other metric for someone as
high functioning as my other sonwho will get married, have kids,
drives, all those things.
SPEAKER_01 (07:32):
In your bio, you describe yourself as an autistic
mother and advocate.
When did that shift happen?
When did you realize thatparenting alone wasn't enough?
And you had to move intoadvocacy.
SPEAKER_00 (07:44):
Well, for me, it was um, I would say he was about
maybe three.
My youngest was about three.
My other son didn't getdiagnosed till he was uh, I
think he was in sixth grade orso.
So he was a little older.
But my youngest, I felt that Ihandled, and I don't know if it
was because I kept fighting sohard to be heard and to be, you
(08:07):
know, listened to about what Iwas, you know, seeing within
him.
That once I got the diagnosis, Iwas lividly excited.
Like I was like so happy, whichis not the normal reaction.
I was like, yes, yes, now I canget help.
You know, I can get to callpeople.
Now I can get, you know, um helpfrom let's say the insurance
company and this, you know, allthat.
(08:27):
So I immediately just got towork and kind of didn't process
the actual diagnoses a hundredpercent.
It was more like I need to getthem the help right now.
And I just kind of went rightinto it.
And I think that not that we allmoms will react the same way,
but I felt like I just wanted tohelp other moms kind of, you
know, to get this news and say,okay, let me empower them to
(08:50):
say, you know, this is not theend of the world.
It's still the same child thatyou walked into this doctor's
appointment before they told you100%.
Same child, same struggles, samevirtue, same, same everything.
Now you just know more aboutthem.
And now you know how to helpthem further better.
And a lot of the time, if youcatch this early on, you are
(09:13):
able to help your child evenmore so than if you would have
waited years, if you would havejust stayed, you know.
So I decided I wanted to notjust help other moms, but get a
life coaching certification.
So I went and got certified andI did it with like a school that
it took me eight months to getthrough it.
So I was not like I wasn't goingfor a quick, easy thing.
(09:34):
I was like, I wanted to makesure I got like something that
was legit and I could reallyhelp moms.
So that I became what we wouldcall an autism support coach.
And I realized though, once Istarted that we are spending a
lot of money on things that arenot covered for our kids, right?
So um we would have speech, PT,OT, like there were so many
(09:56):
different therapies, and then alot of the time insurance
wouldn't cover everything.
So then we would have to coverpart of it, or if your state had
DDD or something that would helpyou towards the cost, almost
never covered everything.
So I was like, okay, theseparents can't afford me.
So then I was like, you knowwhat?
I'm gonna do it at no cost.
And then I just started doing itat no cost and just talking to
(10:18):
parents, and you know, andthat's what I did for probably a
couple years, but then I gotburnt out.
I got totally burnt out.
SPEAKER_01 (10:25):
I can totally understand that.
That was actually my nextquestion.
How did you handle that?
Every mother I have spoken withgets burnt out about autism in
some form or some way.
So, how did you navigate throughthat burnout?
So you could not only be insupport of your son, but also
support yourself and all theothers that you're trying to
(10:48):
help.
SPEAKER_00 (10:49):
I honestly can't tell you.
I think we are all uh I thinkour own biological makeup
sometimes makes us a little bitmore resilient than other
people.
So I feel because I was adaughter of immigrants, I was
someone who had to work fromwhen I was very, very young.
I knew what it was like to notbe able to go away to college,
to have to work, you know,through high school, have to
(11:11):
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 verydifficult life situations,
right?
So this was just one more lifesituation that was going to be
difficult.
So I just handled it the bestthat I could.
I feel that I had a good networkof support around me.
(11:33):
My husband had a good job.
So I was able to stay home anddo whatever he needed to do for
my son.
So I think that was obviouslyvery, very helpful.
But there was a lot of thingsthat were really hard to handle,
like, you know, smearing, like,you know, coop smearing, things
like that when he was likelittle and you know, they get
out of their clothes and youhave to find ways to put them in
these outfits, but then theyfind ways out of that.
(11:55):
So there was a lot of differentthings, but for some reason I
would cry and then I would justbe like, okay, you cried, you
got it out of your sister in lawand let's go do what you gotta
do.
And it was cleaning up, whateverI had to do, I just got it done,
and that was that.
I don't know if that's even thegreatest answer, but that's
really how I dealt with it.
You know, I just didn't, Iwasn't so all me the whole time.
SPEAKER_01 (12:19):
Sure, that makes sense.
Now I'm glad you brought up yourhusband.
Within autistic families,there's about an 80 to 90
percent divorce rate because ofthe struggles they go through.
Did it affect your family?
And if it did, how did you getthrough it?
SPEAKER_00 (12:34):
A lot, a lot.
And it till this day it does.
We have completely differentideas of how to correct certain
behaviors.
I'm a lot more easygoing, a lotmore, 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 lotmore like, you know, oh, he eats
chocolate chip cookies andthrows half a little chocolate
(12:54):
chips on the floor.
Now let's get this little trashcan that he has to put the in
the trash 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, Iguess I'm dealing with a lot
more things, so I'm more tiredand I don't want to deal with a
lot of other things.
So he's more willing to dealwith those as I am just more
like, I gotta pick my battles.
(13:16):
And that's how we kind of workas a marriage.
And also I think it's it's a lotof talking, you know, it's a lot
of talking and understandingeach other and why we feel the
way that we feel.
And in my case, it's like mythinking is these are the best
years of his life.
This is it.
I am gonna pass away, myhusband's gonna pass away.
(13:37):
Hopefully, our other son canhelp out with him.
But these are the best years,and this is when I can make sure
he is the happiest he can everbe.
And that is what I focus onevery single day.
It's his happiness.
SPEAKER_01 (13:49):
That's really good.
That's a great way to look atit.
What strengths do you see inyour family where you have to
deal with autism and everythingthat entails?
What do you see for strengths inyour family that other people
just may not understand?
SPEAKER_00 (14:05):
Well, what we have in strengths is that we honestly
are in the way that we, I guessin the way we communicate, I
think we have to be more openabout things because like if we
are not open and communicateabout everything, then we have
nothing, basically is what itis.
What I can tell you is that alot of our friends who have kids
(14:26):
that are typical, they don'talways see the blessing that
they have.
They don't always see how theyhave all of these options that
we don't have.
And that's what drives me alittle bit crazy sometimes
because I'm like, God, like youdon't see, like you can actually
sit your child down and likehave a rational conversation
with them and you choose not tosometimes, or you tell me, and
(14:48):
then you know, so that's what Isee.
I actually see more of how otherpeople don't appreciate what
they have, honestly.
SPEAKER_01 (14:56):
Now we talk about autistic parents, we talk about
autistic kids, their identitiesthey have.
How has this changed the way youlook at yourself as an autistic
mother who is doing what sheneeds for her autistic son?
SPEAKER_00 (15:12):
Well, I I see myself as way stronger than I ever
thought I was.
I think that's actually the onething that I have gained from
being an autism mom is if youwould have told me all my life I
was gung-ho that I was nothaving children, like that was
my thing.
Now, kids, I'm never havingkids.
Like, I'm gonna like travel theworld and that's gonna be my
(15:32):
life.
And you know, maybe I won't evenever get married, but I'm
definitely not having kids.
Like that's who I was.
More focused on my career andall those kinds of things.
And then when I decided tobecome a mom, I became a mom at
33.
So a little later, you know, formy age, I'm 51 now.
I became a mom later.
I think it just like if youwould have told me then that
this would be my life, I wouldhave said, I could never do
(15:55):
this.
I could never, no freaking way.
But for some reason, you get thestrength and you do it.
It doesn't make it easy,obviously, even if you have that
mentality.
But the mentality that I did gointo as a woman in her mid-30s,
trying to have children and alsobeing told I cannot have any
easily, right?
(16:16):
Then having to do fertilitytreatments was I'm going to
accept whatever I'm being givenas a mom.
And my firstborn, because I, youknow, I was 33, they were like,
Oh, you know, you have a highchance of having a child with
down syndrome, all thesedifferent things.
Then they wanted to do theadenosynthesis and all this
stuff.
And I'm like, nope, you know, itwas hard enough to get pregnant.
(16:36):
It took me three years.
I'm like, I am not letting youdo an amnio.
And they were like, but youknow, if if the baby had I'm
like, nope, I'm not, I'm notdoing it, I'll take whatever
comes to me.
That's what it is.
And I think that is a resolvethat I know that I had then at
that moment of wanting to becomea mom.
SPEAKER_01 (16:54):
Sure, sure.
Now, when people, your friends,your family, the ones you help
with your advocacy, 10, 15, 20years from now, when they look
back at the work you've done forthe autistic community, what do
you hope they say changedbecause you showed up?
SPEAKER_00 (17:14):
Well, I hope it's more just awareness, just
education surrounding what it islike, especially when it comes
to nonverbal children.
Because I think that'sabsolutely the hardest part of
autism is when you have anautistic child who is nonverbal
and one that cannot take care ofthemselves.
So it's not just that they'renonverbal, because we know that
(17:34):
there's many nonverbalindividuals that can type and
all these things.
And, you know, and we're stillwe 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 cancommunicate through a device.
So we're still in a place wherewe're not saying he can't do
this or that.
I'm hoping that what people thatmeet me walk away with is you
(17:57):
just never give up, but you'realso realistic and you're also
are given a situation and youfind the best opportunities
within that situation foryourself and for your child and
your family.
SPEAKER_01 (18:09):
I just had a mother of a nonverbal autistic daughter
on an episode just a couple ofdays ago.
She said, Imagine putting apiece of tape on your mouth and
trying to communicate what it isthat you want.
It's very obvious a lot ofpeople do not understand what a
mother of a nonverbal autisticchild has to go through.
SPEAKER_00 (18:32):
Yeah.
And what that does to a lot ofus is it becomes like a prison
because you're a prisoner inyour home.
Even though people say, Oh, youknow, I'll watch him.
You're like, oh no, no, no, youdon't understand.
Like, there's like all thesedifferent things.
It's like he can't communicate ahundred percent.
You're going to be confused.
Even if, you know, my son cancommunicate through his um iPad
(18:55):
with the Prolocal2go app, but hedoesn't, because we know him so
well, like sometimes he doesn'teven have to say anything.
Like we have like almost like apsychic connection to him where
we kind of know what he'slooking for or what he wants, or
the by the time we kind of know,and and we are almost always
right, you know.
So that's what I think a lot ofpeople don't understand is like
when you have someone like that,it's not as easy as, oh, just
(19:18):
leave him with me for a couplehours.
There's so much that may happenin those couple of hours that
you have to know how to handleand how to deal with.
SPEAKER_01 (19:27):
There's a saying that people have different
seasons throughout theirlifetime.
What has been one of your moredifficult seasons in your
journey?
Then what helped you get throughit?
SPEAKER_00 (19:39):
To be honest with you, I think this is the most
difficult season.
Even though when you wereyounger, there was a lot of
uncertainty because you don'tknow what's happening.
They keep saying they can talkby the sage, they can do this by
the stage, or you know, andyou're you're all have all these
hopes and dreams and whatever.
I think now, as they get older,is when you're becoming more of
(19:59):
like a sober, like you'relooking at this more in a sober
way.
Like this is it.
Like this is kind of it.
So then you know that there'snot a whole bunch more that can
possibly change.
So I would say this is the mostimpactful time because this is
the time when he's gonna be 17years old.
He's almost an adult.
(20:19):
Now I have to start thinkingabout conservativeship, all
these things.
Like it basically confirms thatokay, now for the rest of your
life, this is yourresponsibility.
You're not gonna have, you know,the empty nest syndrome.
Like this is this is it.
So now you have to make surethat every other plan involves
this individual always andforever.
SPEAKER_01 (20:41):
Yeah, that's a very hard reality, but it is one that
we all have to look at.
SPEAKER_00 (20:46):
Exactly.
SPEAKER_01 (20:47):
So looking back, what kind of support do you wish
you had early in your journey tohelp guide you, get more
information so that you knewexactly or close to what you
might be looking for in thefuture?
SPEAKER_00 (21:01):
So I happen to be one of those people, like I told
you earlier, that I researcheverything before.
So I honestly had a lot more ofa doom and gloom vision of
everything at the verybeginning.
And I was someone who asked fora lot of advice.
I did mom's groups, I did uh,you know, I did it all.
I was involved, like, you know,in autism awareness campaigns.
(21:25):
I volunteered for autismresearch.
I worked with the organizationof autism research um just to
just to be part of a communityraising funds for research.
Like I was really in the nittygritty of everything while he
was also going through the nittygritty of growing up and
learning to go to the bathroomand all those things.
(21:46):
So I honestly feel that Isurrounded myself with a lot of
people that had kids in allparts of the spectrum.
So that was very, very helpfulfor me.
What I have noticed is that asthey get older, those groups.
Kind of fall apart.
And that's what I have noticedbecause the kids kind of end not
end, but they get to a certainpoint where there's not that
(22:07):
much developing.
They kind of have theirpersonality now.
So I think parents rely less onother parents of kids on the
spectrum.
So now I find it to be like if Ihave my friends that I still
have, um, our kids are older, sonow it's a lot less about
autism.
It's more about what we're doingfor ourselves.
SPEAKER_01 (22:26):
You mentioned friends.
This kind of popped in my mind.
So many people that I've spokenwith over the last couple of
years, they've had friends theywould do things with.
They all had kids.
One had an autistic kid.
That changed everything.
There was a disconnect.
The neurotypical family did notfully understand the
(22:49):
neurodivergent family.
Did that happen to you?
SPEAKER_00 (22:52):
Yes.
And the reasoning behind that isbecause you can't just go on a
play date.
You know, your child can't sitand play with them.
Like they can play beside them,right?
Side by side, but they can'tplay with them.
So that obviously makes thatother parent feel like, well, I
need to hang out with parentsthat have kids that can play
with my kids, and then we cantalk and hang out with each
other.
(23:12):
So you tend to hang out.
I didn't do even many play dateswith the parents and the kids
that had autism because the kidswere never playing together.
They were just in the same roomand we were all together
chatting, but the kids were outdoing their own thing.
Wherever we were, they were kindof just doing their own thing.
And some of them would have alittle bit of an interaction
here and there, but we realizedthat it was better for us to
(23:35):
meet separately on our own.
Leave the kids with ourhusbands, the kids were getting
their time at school.
You know, Connor startedobviously with even before three
years old, he started like at adaycare for special needs
children that he would go in forseveral hours.
And then I would have histherapies take place there and
then also at home.
But he would be able to bearound other kids there and then
(23:57):
come home, do more therapy athome.
And then at three, he went intolike a more of a typical school
that had an autism program untilwe moved into an autism school.
So in reality, having theparents that we had, the typical
kids like that kind of fell off.
And then it became more aboutparents that you could
understand each other and thatyou were of support to each
(24:19):
other.
SPEAKER_01 (24:19):
Where do you feel the conversation needs to go
about autism over the next fiveto 10 years?
SPEAKER_00 (24:25):
I feel that's a tough question because I feel
that the conversation needs tobe a lot more awareness when it
comes starting literally at thelevel of kindergarten.
And that's one of the reasonswhy I love the organization for
autism research is because theyhave booklets.
They have invested a lot ineducating not just children in
(24:46):
schools and they have age rangesfor each one of their
educational packets.
They also do siblings, they alsohelp with work, helping the um
adult population find work.
I think that is what we needmore complete awareness.
What kind of jobs can our kidsdo, even if they're nonverbal?
Maybe they like to stuffenvelopes.
(25:06):
Who the heck knows?
There's so many things that theycan do.
It's really starting from thevery bottom.
So that when your child, let'ssay you want to have a kid
that's in an all-inclusiveenvironment, right?
That maybe the kids who aretypical don't look at them in a
weird way because maybe my soncan't speak, but my son can
absolutely take in the energy ofother people.
So when your kids are looking atthem or treating them a certain
(25:29):
way or whatever, like they haveto feel that energy.
So I feel like it's really allstill about awareness.
And then as they get older,opportunities to be able to do
things outside of school thathelp them learn some skills, not
just in school, but outside ofschool that prepare them for a
little later in life.
Even if it's menial tasks, evenif it's a small thing, it makes
(25:53):
them so happy if it's somethingthey enjoy.
SPEAKER_01 (25:55):
For first-time listeners that are just starting
to find out about autism, whatdo you think is one of the more
important things they learn?
As you know, when they firstfind out their child is
autistic, it is overwhelming.
They don't know what to do.
So many people telling them whatthey need to do.
What do you think is the mostimportant thing they find out so
(26:19):
they can take that path, learnwhat they need to do to make
their journey a little easier tomove forward in helping their
child?
SPEAKER_00 (26:27):
So that is actually a lot of what I did when I did
my coaching was literally coachmoms whose kids were just
diagnosed how to navigate thejourney of I just got this
diagnosis for my son.
What do I do?
I am completely overwhelmed.
So then what I would do is tellthem, okay, the first step is
they're gonna tell you, they'regonna give you the whole
(26:48):
diagnoses and obviously thereport, they're gonna tell you
what therapies they need.
Now, let's see what are theavailability of services in your
state.
Let's start there, because eventhough you think I have
insurance, there are states thatcan actually pay 100% of your
child's.
You know, we're in Arizona rightnow, which I did not know
(27:09):
because we were living on theEast Coast when he got
diagnosed.
For example, here in Arizona,the DDD, once you go into the
DDD and you apply, once you getthe diagnoses, you apply, you
have your diagnoses, then theyaccept you in, then you go in
and you fill out for long-termcare, especially if they're
nonverbal still.
And long-term care is part ofthe DDD.
(27:31):
So there they'll give you theservices for speech, for um PT,
OT, all of those things, right?
Everything.
And then once they approvethose, you get all of those
services at no cost to you.
They give you a certain amountof hours, all of that.
Not only do they do that, butthey also give you a certain
amount of hours depending onyour child's diagnosis level of
(27:52):
respite and habilitation hours.
So you get monthly, you getyearly respite hours, you get uh
weekly half hours.
So that is somebody coming intoyour house, helping you, like
let's say 15 hours a week,helping you with teaching them
how to use the bathroom, how towipe, how to brush their teeth,
how to comb their hair, all ofthese different things.
But a lot of people don't knowthat these services are
(28:14):
available to them.
So it's basically look intowhat's available for you.
I have never had to touchinsurance.
We have insurance through DDDhere in Arizona.
So he doesn't have an insurancelike my husband and I and my
other son have.
It's DDD 100% covered, likeevery single thing.
So that's the first step.
Find out what your state canoffer you.
Then if you can't get everythingcovered, then go to your
(28:37):
insurance, see what's covered,what's not covered, what can
afford.
It's a long list of things, butif you have someone helping you
navigate that list, you know,saying, okay, let's tackle this
list in the next two days, likeeverything, 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 taketime.
Don't think that this is justhappening to you.
(28:57):
It's happening to everybody.
Sometimes appointments takemonths to be able to get with a
specialist after the appointmentand the diagnoses.
So it's more about patience andjust educating yourself while
you're waiting.
SPEAKER_01 (29:11):
Yeah, good information.
What do you think is importantfor listeners to hear about
where you are in your life rightnow?
And what do you want them tounderstand?
SPEAKER_00 (29:21):
What I'm doing right now at this stage in my life is
I'm past the time where it wasall about my son.
I am in a stage of my life nowthat I am also taking care of
myself and my family and allthose things that I want to do.
So work towards the point whereyou feel comfortable enough to
pick up all the things that youloved to do that maybe you
weren't doing all the waybecause you were concentrating
(29:43):
on the needs of your child.
Build yourself a village ofpeople who will be there for you
so that you can go travel andthey can help you with your
child or that you can go todinner with your husband to keep
that relationship strong.
So it's really all about to getto the point to where you have a
life that is satisfying to youand it's not all about autism
and that your life doesn't haveto be about that.
(30:04):
When you're out with people,you're not just talking about
autism, and then people arelike, oh my God, you know, Belke
only talks about autism whenwe're together.
You have to know when and whereis the right time and work
towards that, that you areindependent of that as a human
being, as a soul.
SPEAKER_01 (30:20):
Well, this has been great, great conversation, great
information.
Thanks for taking the time tojoin us today.
SPEAKER_00 (30:25):
Thank you so much.
I'm hoping I got a lot of pointsthat are useful for people.
SPEAKER_01 (30:30):
Absolutely.
It's been great.
Thanks again.
Thanks for taking time out ofyour busy schedule to listen to
our show today.
We hope you enjoyed it as muchas we enjoyed bringing it to
you.
If you know someone who has astory to share, tell them to
(30:53):
contact us at why notme.world.
One last thing, spread the wordabout why not me.
Our conversations, our inspiringguests that show you are not
alone in this world.
Welcome to Why Not Me, embracing autism and mental
health worldwide.
Hosted by Tony Mentor.
Broadcasting from the heart ofMusic City, USA, Nashville,
Tennessee.
Join us as our guests sharetheir raw, powerful stories.
Some will spark laughter, otherswill move you to tears.
(00:30):
These real life journeysinspire, connect, and remind you
that you're never alone.
We're igniting a global movementto empower everyone to make a
lasting difference by fosteringdeep awareness, unwavering
acceptance, and profoundunderstanding of autism and
(00:52):
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Thanks for being here.
Joining us today is Belki OrtizMalili.
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She has dedicated her life toempowering others through
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(01:35):
Through her work, she helpsfamilies move from isolation to
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She has a great story, so beforewe dive into our episode, we'll
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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 uswhat first connected you to
(01:57):
autism?
SPEAKER_00 (01:58):
Well, I am an autism mom, so I have almost
17-year-olds.
He'll be 17 now in March.
Son, who is non-verbal autistic.
He obviously has very uh highneeds.
I mean, we haven't had him, youknow, tested again, but last we
tested him, he was like maybe 12or so, and he was more like a
three to four-year-old, maybewhen it came to his abilities,
(02:22):
you know, what we could, I wouldsay, test and see.
So we haven't done that again.
I think he is all over theplace.
I don't think it's just one agerange that he's in.
I think there are certain thingsI think he processes at an older
level.
So that's why I'm like, no moreof those.
SPEAKER_01 (02:37):
Sure.
Can you take us back to themoment you first realized
something wasn't quite rightwith your son?
Can you take us to that momentwhen it became clear that you
had to take action?
SPEAKER_00 (02:48):
Well, I have another son who is a year and three
months older than him.
It's a very long story, the waythat everything went down with
us and our kids.
But my son, who is on thespectrum and non-verbal, he was
one of multiple babies that Iwas carrying.
So he and one of the babies thatwere born were born at uh six
(03:09):
months gestation.
So they came super, super early.
And my daughter unfortunatelydidn't, you know, make it past
five days.
And then he did.
They both got a very interestingthing, but they both got brain
bleeds in the NICU on the sameexact day, right around the same
time, even though they were indifferent isolates.
Very, very strange, but theydid.
(03:29):
And then she ended up passingfrom hers and he, uh think she
had a grade four and he had agrade two.
So we already knew that we wouldprobably encounter some issues,
you know, with him.
But then when he was, he wasdeveloping quite well.
He was in the NICU for overthree months.
But then once he came home, youknow, we had just the issues
(03:51):
with digestion and tummy aches.
And so we had a lot of thoseissues uh that we had to deal
with with him, but he seemed tobe progressing around the birth,
not the birth age, but what hisbirth 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 otherson was reaching milestones
(04:15):
about six months that he hadn'treached at nine.
So then I immediately was like,okay, well, Evan was doing this,
Connor's not doing this.
I just started really, justreally holding into the things
that I was noticing were nothappening at the time, the when
it should be done.
And I'm one of those people whoI like to research everything.
So before I even became a mom,because I had to do IVF and all
(04:37):
those things to become a mom, Iwas very educated and I bought
books about all sorts of thingsthat you could possibly imagine.
And one of them was about autismand learning the signs of autism
and other um, what would yousay, developmental issues that
your children can have.
So that actually helped me alsobecause I didn't see those with
my first.
(04:57):
I started to see those with mysecond.
So then right away I startedasking questions to the
pediatrician and saying, I don'tsee 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 thesame kind of things that you
hear a lot of people say.
So uh yes, it was like a littlebit of a battle because
(05:18):
nutritions look at you likeyou're crazy because you want to
give your kid some sort ofdiagnosis, and I'm like, I know
that something's not right.
So yeah, so it took a while forme to get the help I think he
needed.
SPEAKER_01 (05:29):
What do you think most people misunderstand about
autism?
Your son's gonna be what, 17 or18?
SPEAKER_00 (05:36):
He's gonna be 17 now.
SPEAKER_01 (05:38):
Okay, 17.
SPEAKER_00 (05:39):
Yeah.
SPEAKER_01 (05:40):
Okay, so you've gone through 17 years of autism.
What are some of the things thatyou think people just don't get?
SPEAKER_00 (05:47):
They don't get that there is a spectrum.
Even though you hear about theautism spectrum, I feel like
people don't understand thespectrum.
Like every time I say I have ason on the autism spectrum, they
always think he can speak, theyalways think he has a gift, they
always think of Rain Man.
It's just, it's a constant,like, I don't understand how
(06:08):
people are not more educatedabout autism.
You know, I lived in New Jersey.
Now we're in Arizona.
I'm a New Yorker, but I feltthat on the East Coast there was
a little bit more of aneducation around autism when I
would have conversations,especially the last, you know,
like maybe when he was like fiveor six, I felt like people were
a little bit more educated.
(06:29):
But then I move over to the WestCoast and let's say this state.
And not that people here areignorant by any means.
I just feel that there is lessof an awareness of what the
spectrum is actually about.
And of course, because theycontinually change how we
diagnose or what we name thesediagnoses from, you know, oh,
Asperger's.
Now, Asperger's doesn't exist.
(06:50):
Uh blah, blah, blah.
Now it's one, two, three.
What level are they?
And then people are completelyconfused about these levels and
what they mean.
I feel like, you know, my son isa level one and my 18-year-old
is actually a level three, whichis something I don't really
speak about because he is higherfunctioning and he has been
usually very private about this.
(07:12):
And we've come to a place wherehe's more open about it.
I don't think they should beanywhere in the, even though I
know there's a one and three,not one to three, I still feel
like they shouldn't be in thesame categories.
They shouldn't be.
I just feel like there should besome other metric for someone as
high functioning as my other sonwho will get married, have kids,
drives, all those things.
SPEAKER_01 (07:32):
In your bio, you describe yourself as an autistic
mother and advocate.
When did that shift happen?
When did you realize thatparenting alone wasn't enough?
And you had to move intoadvocacy.
SPEAKER_00 (07:44):
Well, for me, it was um, I would say he was about
maybe three.
My youngest was about three.
My other son didn't getdiagnosed till he was uh, I
think he was in sixth grade orso.
So he was a little older.
But my youngest, I felt that Ihandled, and I don't know if it
was because I kept fighting sohard to be heard and to be, you
(08:07):
know, listened to about what Iwas, you know, seeing within
him.
That once I got the diagnosis, Iwas lividly excited.
Like I was like so happy, whichis not the normal reaction.
I was like, yes, yes, now I canget help.
You know, I can get to callpeople.
Now I can get, you know, um helpfrom let's say the insurance
company and this, you know, allthat.
(08:27):
So I immediately just got towork and kind of didn't process
the actual diagnoses a hundredpercent.
It was more like I need to getthem the help right now.
And I just kind of went rightinto it.
And I think that not that we allmoms will react the same way,
but I felt like I just wanted tohelp other moms kind of, you
know, to get this news and say,okay, let me empower them to
(08:50):
say, you know, this is not theend of the world.
It's still the same child thatyou walked into this doctor's
appointment before they told you100%.
Same child, same struggles, samevirtue, same, same everything.
Now you just know more aboutthem.
And now you know how to helpthem further better.
And a lot of the time, if youcatch this early on, you are
(09:13):
able to help your child evenmore so than if you would have
waited years, if you would havejust stayed, you know.
So I decided I wanted to notjust help other moms, but get a
life coaching certification.
So I went and got certified andI did it with like a school that
it took me eight months to getthrough it.
So I was not like I wasn't goingfor a quick, easy thing.
(09:34):
I was like, I wanted to makesure I got like something that
was legit and I could reallyhelp moms.
So that I became what we wouldcall an autism support coach.
And I realized though, once Istarted that we are spending a
lot of money on things that arenot covered for our kids, right?
So um we would have speech, PT,OT, like there were so many
(09:56):
different therapies, and then alot of the time insurance
wouldn't cover everything.
So then we would have to coverpart of it, or if your state had
DDD or something that would helpyou towards the cost, almost
never covered everything.
So I was like, okay, theseparents can't afford me.
So then I was like, you knowwhat?
I'm gonna do it at no cost.
And then I just started doing itat no cost and just talking to
(10:18):
parents, and you know, andthat's what I did for probably a
couple years, but then I gotburnt out.
I got totally burnt out.
SPEAKER_01 (10:25):
I can totally understand that.
That was actually my nextquestion.
How did you handle that?
Every mother I have spoken withgets burnt out about autism in
some form or some way.
So, how did you navigate throughthat burnout?
So you could not only be insupport of your son, but also
support yourself and all theothers that you're trying to
(10:48):
help.
SPEAKER_00 (10:49):
I honestly can't tell you.
I think we are all uh I thinkour own biological makeup
sometimes makes us a little bitmore resilient than other
people.
So I feel because I was adaughter of immigrants, I was
someone who had to work fromwhen I was very, very young.
I knew what it was like to notbe able to go away to college,
to have to work, you know,through high school, have to
(11:11):
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 verydifficult life situations,
right?
So this was just one more lifesituation that was going to be
difficult.
So I just handled it the bestthat I could.
I feel that I had a good networkof support around me.
(11:33):
My husband had a good job.
So I was able to stay home anddo whatever he needed to do for
my son.
So I think that was obviouslyvery, very helpful.
But there was a lot of thingsthat were really hard to handle,
like, you know, smearing, like,you know, coop smearing, things
like that when he was likelittle and you know, they get
out of their clothes and youhave to find ways to put them in
these outfits, but then theyfind ways out of that.
(11:55):
So there was a lot of differentthings, but for some reason I
would cry and then I would justbe like, okay, you cried, you
got it out of your sister in lawand let's go do what you gotta
do.
And it was cleaning up, whateverI had to do, I just got it done,
and that was that.
I don't know if that's even thegreatest answer, but that's
really how I dealt with it.
You know, I just didn't, Iwasn't so all me the whole time.
SPEAKER_01 (12:19):
Sure, that makes sense.
Now I'm glad you brought up yourhusband.
Within autistic families,there's about an 80 to 90
percent divorce rate because ofthe struggles they go through.
Did it affect your family?
And if it did, how did you getthrough it?
SPEAKER_00 (12:34):
A lot, a lot.
And it till this day it does.
We have completely differentideas of how to correct certain
behaviors.
I'm a lot more easygoing, a lotmore, 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 lotmore like, you know, oh, he eats
chocolate chip cookies andthrows half a little chocolate
(12:54):
chips on the floor.
Now let's get this little trashcan that he has to put the in
the trash 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, Iguess I'm dealing with a lot
more things, so I'm more tiredand I don't want to deal with a
lot of other things.
So he's more willing to dealwith those as I am just more
like, I gotta pick my battles.
(13:16):
And that's how we kind of workas a marriage.
And also I think it's it's a lotof talking, you know, it's a lot
of talking and understandingeach other and why we feel the
way that we feel.
And in my case, it's like mythinking is these are the best
years of his life.
This is it.
I am gonna pass away, myhusband's gonna pass away.
(13:37):
Hopefully, our other son canhelp out with him.
But these are the best years,and this is when I can make sure
he is the happiest he can everbe.
And that is what I focus onevery single day.
It's his happiness.
SPEAKER_01 (13:49):
That's really good.
That's a great way to look atit.
What strengths do you see inyour family where you have to
deal with autism and everythingthat entails?
What do you see for strengths inyour family that other people
just may not understand?
SPEAKER_00 (14:05):
Well, what we have in strengths is that we honestly
are in the way that we, I guessin the way we communicate, I
think we have to be more openabout things because like if we
are not open and communicateabout everything, then we have
nothing, basically is what itis.
What I can tell you is that alot of our friends who have kids
(14:26):
that are typical, they don'talways see the blessing that
they have.
They don't always see how theyhave all of these options that
we don't have.
And that's what drives me alittle bit crazy sometimes
because I'm like, God, like youdon't see, like you can actually
sit your child down and likehave a rational conversation
with them and you choose not tosometimes, or you tell me, and
(14:48):
then you know, so that's what Isee.
I actually see more of how otherpeople don't appreciate what
they have, honestly.
SPEAKER_01 (14:56):
Now we talk about autistic parents, we talk about
autistic kids, their identitiesthey have.
How has this changed the way youlook at yourself as an autistic
mother who is doing what sheneeds for her autistic son?
SPEAKER_00 (15:12):
Well, I I see myself as way stronger than I ever
thought I was.
I think that's actually the onething that I have gained from
being an autism mom is if youwould have told me all my life I
was gung-ho that I was nothaving children, like that was
my thing.
Now, kids, I'm never havingkids.
Like, I'm gonna like travel theworld and that's gonna be my
(15:32):
life.
And you know, maybe I won't evenever get married, but I'm
definitely not having kids.
Like that's who I was.
More focused on my career andall those kinds of things.
And then when I decided tobecome a mom, I became a mom at
33.
So a little later, you know, formy age, I'm 51 now.
I became a mom later.
I think it just like if youwould have told me then that
this would be my life, I wouldhave said, I could never do
(15:55):
this.
I could never, no freaking way.
But for some reason, you get thestrength and you do it.
It doesn't make it easy,obviously, even if you have that
mentality.
But the mentality that I did gointo as a woman in her mid-30s,
trying to have children and alsobeing told I cannot have any
easily, right?
(16:16):
Then having to do fertilitytreatments was I'm going to
accept whatever I'm being givenas a mom.
And my firstborn, because I, youknow, I was 33, they were like,
Oh, you know, you have a highchance of having a child with
down syndrome, all thesedifferent things.
Then they wanted to do theadenosynthesis and all this
stuff.
And I'm like, nope, you know, itwas hard enough to get pregnant.
(16:36):
It took me three years.
I'm like, I am not letting youdo an amnio.
And they were like, but youknow, if if the baby had I'm
like, nope, I'm not, I'm notdoing it, I'll take whatever
comes to me.
That's what it is.
And I think that is a resolvethat I know that I had then at
that moment of wanting to becomea mom.
SPEAKER_01 (16:54):
Sure, sure.
Now, when people, your friends,your family, the ones you help
with your advocacy, 10, 15, 20years from now, when they look
back at the work you've done forthe autistic community, what do
you hope they say changedbecause you showed up?
SPEAKER_00 (17:14):
Well, I hope it's more just awareness, just
education surrounding what it islike, especially when it comes
to nonverbal children.
Because I think that'sabsolutely the hardest part of
autism is when you have anautistic child who is nonverbal
and one that cannot take care ofthemselves.
So it's not just that they'renonverbal, because we know that
(17:34):
there's many nonverbalindividuals that can type and
all these things.
And, you know, and we're stillwe 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 cancommunicate through a device.
So we're still in a place wherewe're not saying he can't do
this or that.
I'm hoping that what people thatmeet me walk away with is you
(17:57):
just never give up, but you'realso realistic and you're also
are given a situation and youfind the best opportunities
within that situation foryourself and for your child and
your family.
SPEAKER_01 (18:09):
I just had a mother of a nonverbal autistic daughter
on an episode just a couple ofdays ago.
She said, Imagine putting apiece of tape on your mouth and
trying to communicate what it isthat you want.
It's very obvious a lot ofpeople do not understand what a
mother of a nonverbal autisticchild has to go through.
SPEAKER_00 (18:32):
Yeah.
And what that does to a lot ofus is it becomes like a prison
because you're a prisoner inyour home.
Even though people say, Oh, youknow, I'll watch him.
You're like, oh no, no, no, youdon't understand.
Like, there's like all thesedifferent things.
It's like he can't communicate ahundred percent.
You're going to be confused.
Even if, you know, my son cancommunicate through his um iPad
(18:55):
with the Prolocal2go app, but hedoesn't, because we know him so
well, like sometimes he doesn'teven have to say anything.
Like we have like almost like apsychic connection to him where
we kind of know what he'slooking for or what he wants, or
the by the time we kind of know,and and we are almost always
right, you know.
So that's what I think a lot ofpeople don't understand is like
when you have someone like that,it's not as easy as, oh, just
(19:18):
leave him with me for a couplehours.
There's so much that may happenin those couple of hours that
you have to know how to handleand how to deal with.
SPEAKER_01 (19:27):
There's a saying that people have different
seasons throughout theirlifetime.
What has been one of your moredifficult seasons in your
journey?
Then what helped you get throughit?
SPEAKER_00 (19:39):
To be honest with you, I think this is the most
difficult season.
Even though when you wereyounger, there was a lot of
uncertainty because you don'tknow what's happening.
They keep saying they can talkby the sage, they can do this by
the stage, or you know, andyou're you're all have all these
hopes and dreams and whatever.
I think now, as they get older,is when you're becoming more of
(19:59):
like a sober, like you'relooking at this more in a sober
way.
Like this is it.
Like this is kind of it.
So then you know that there'snot a whole bunch more that can
possibly change.
So I would say this is the mostimpactful time because this is
the time when he's gonna be 17years old.
He's almost an adult.
(20:19):
Now I have to start thinkingabout conservativeship, all
these things.
Like it basically confirms thatokay, now for the rest of your
life, this is yourresponsibility.
You're not gonna have, you know,the empty nest syndrome.
Like this is this is it.
So now you have to make surethat every other plan involves
this individual always andforever.
SPEAKER_01 (20:41):
Yeah, that's a very hard reality, but it is one that
we all have to look at.
SPEAKER_00 (20:46):
Exactly.
SPEAKER_01 (20:47):
So looking back, what kind of support do you wish
you had early in your journey tohelp guide you, get more
information so that you knewexactly or close to what you
might be looking for in thefuture?
SPEAKER_00 (21:01):
So I happen to be one of those people, like I told
you earlier, that I researcheverything before.
So I honestly had a lot more ofa doom and gloom vision of
everything at the verybeginning.
And I was someone who asked fora lot of advice.
I did mom's groups, I did uh,you know, I did it all.
I was involved, like, you know,in autism awareness campaigns.
(21:25):
I volunteered for autismresearch.
I worked with the organizationof autism research um just to
just to be part of a communityraising funds for research.
Like I was really in the nittygritty of everything while he
was also going through the nittygritty of growing up and
learning to go to the bathroomand all those things.
(21:46):
So I honestly feel that Isurrounded myself with a lot of
people that had kids in allparts of the spectrum.
So that was very, very helpfulfor me.
What I have noticed is that asthey get older, those groups.
Kind of fall apart.
And that's what I have noticedbecause the kids kind of end not
end, but they get to a certainpoint where there's not that
(22:07):
much developing.
They kind of have theirpersonality now.
So I think parents rely less onother parents of kids on the
spectrum.
So now I find it to be like if Ihave my friends that I still
have, um, our kids are older, sonow it's a lot less about
autism.
It's more about what we're doingfor ourselves.
SPEAKER_01 (22:26):
You mentioned friends.
This kind of popped in my mind.
So many people that I've spokenwith over the last couple of
years, they've had friends theywould do things with.
They all had kids.
One had an autistic kid.
That changed everything.
There was a disconnect.
The neurotypical family did notfully understand the
(22:49):
neurodivergent family.
Did that happen to you?
SPEAKER_00 (22:52):
Yes.
And the reasoning behind that isbecause you can't just go on a
play date.
You know, your child can't sitand play with them.
Like they can play beside them,right?
Side by side, but they can'tplay with them.
So that obviously makes thatother parent feel like, well, I
need to hang out with parentsthat have kids that can play
with my kids, and then we cantalk and hang out with each
other.
(23:12):
So you tend to hang out.
I didn't do even many play dateswith the parents and the kids
that had autism because the kidswere never playing together.
They were just in the same roomand we were all together
chatting, but the kids were outdoing their own thing.
Wherever we were, they were kindof just doing their own thing.
And some of them would have alittle bit of an interaction
here and there, but we realizedthat it was better for us to
(23:35):
meet separately on our own.
Leave the kids with ourhusbands, the kids were getting
their time at school.
You know, Connor startedobviously with even before three
years old, he started like at adaycare for special needs
children that he would go in forseveral hours.
And then I would have histherapies take place there and
then also at home.
But he would be able to bearound other kids there and then
(23:57):
come home, do more therapy athome.
And then at three, he went intolike a more of a typical school
that had an autism program untilwe moved into an autism school.
So in reality, having theparents that we had, the typical
kids like that kind of fell off.
And then it became more aboutparents that you could
understand each other and thatyou were of support to each
(24:19):
other.
SPEAKER_01 (24:19):
Where do you feel the conversation needs to go
about autism over the next fiveto 10 years?
SPEAKER_00 (24:25):
I feel that's a tough question because I feel
that the conversation needs tobe a lot more awareness when it
comes starting literally at thelevel of kindergarten.
And that's one of the reasonswhy I love the organization for
autism research is because theyhave booklets.
They have invested a lot ineducating not just children in
(24:46):
schools and they have age rangesfor each one of their
educational packets.
They also do siblings, they alsohelp with work, helping the um
adult population find work.
I think that is what we needmore complete awareness.
What kind of jobs can our kidsdo, even if they're nonverbal?
Maybe they like to stuffenvelopes.
(25:06):
Who the heck knows?
There's so many things that theycan do.
It's really starting from thevery bottom.
So that when your child, let'ssay you want to have a kid
that's in an all-inclusiveenvironment, right?
That maybe the kids who aretypical don't look at them in a
weird way because maybe my soncan't speak, but my son can
absolutely take in the energy ofother people.
So when your kids are looking atthem or treating them a certain
(25:29):
way or whatever, like they haveto feel that energy.
So I feel like it's really allstill about awareness.
And then as they get older,opportunities to be able to do
things outside of school thathelp them learn some skills, not
just in school, but outside ofschool that prepare them for a
little later in life.
Even if it's menial tasks, evenif it's a small thing, it makes
(25:53):
them so happy if it's somethingthey enjoy.
SPEAKER_01 (25:55):
For first-time listeners that are just starting
to find out about autism, whatdo you think is one of the more
important things they learn?
As you know, when they firstfind out their child is
autistic, it is overwhelming.
They don't know what to do.
So many people telling them whatthey need to do.
What do you think is the mostimportant thing they find out so
(26:19):
they can take that path, learnwhat they need to do to make
their journey a little easier tomove forward in helping their
child?
SPEAKER_00 (26:27):
So that is actually a lot of what I did when I did
my coaching was literally coachmoms whose kids were just
diagnosed how to navigate thejourney of I just got this
diagnosis for my son.
What do I do?
I am completely overwhelmed.
So then what I would do is tellthem, okay, the first step is
they're gonna tell you, they'regonna give you the whole
(26:48):
diagnoses and obviously thereport, they're gonna tell you
what therapies they need.
Now, let's see what are theavailability of services in your
state.
Let's start there, because eventhough you think I have
insurance, there are states thatcan actually pay 100% of your
child's.
You know, we're in Arizona rightnow, which I did not know
(27:09):
because we were living on theEast Coast when he got
diagnosed.
For example, here in Arizona,the DDD, once you go into the
DDD and you apply, once you getthe diagnoses, you apply, you
have your diagnoses, then theyaccept you in, then you go in
and you fill out for long-termcare, especially if they're
nonverbal still.
And long-term care is part ofthe DDD.
(27:31):
So there they'll give you theservices for speech, for um PT,
OT, all of those things, right?
Everything.
And then once they approvethose, you get all of those
services at no cost to you.
They give you a certain amountof hours, all of that.
Not only do they do that, butthey also give you a certain
amount of hours depending onyour child's diagnosis level of
(27:52):
respite and habilitation hours.
So you get monthly, you getyearly respite hours, you get uh
weekly half hours.
So that is somebody coming intoyour house, helping you, like
let's say 15 hours a week,helping you with teaching them
how to use the bathroom, how towipe, how to brush their teeth,
how to comb their hair, all ofthese different things.
But a lot of people don't knowthat these services are
(28:14):
available to them.
So it's basically look intowhat's available for you.
I have never had to touchinsurance.
We have insurance through DDDhere in Arizona.
So he doesn't have an insurancelike my husband and I and my
other son have.
It's DDD 100% covered, likeevery single thing.
So that's the first step.
Find out what your state canoffer you.
Then if you can't get everythingcovered, then go to your
(28:37):
insurance, see what's covered,what's not covered, what can
afford.
It's a long list of things, butif you have someone helping you
navigate that list, you know,saying, okay, let's tackle this
list in the next two days, likeeverything, 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 taketime.
Don't think that this is justhappening to you.
(28:57):
It's happening to everybody.
Sometimes appointments takemonths to be able to get with a
specialist after the appointmentand the diagnoses.
So it's more about patience andjust educating yourself while
you're waiting.
SPEAKER_01 (29:11):
Yeah, good information.
What do you think is importantfor listeners to hear about
where you are in your life rightnow?
And what do you want them tounderstand?
SPEAKER_00 (29:21):
What I'm doing right now at this stage in my life is
I'm past the time where it wasall about my son.
I am in a stage of my life nowthat I am also taking care of
myself and my family and allthose things that I want to do.
So work towards the point whereyou feel comfortable enough to
pick up all the things that youloved to do that maybe you
weren't doing all the waybecause you were concentrating
(29:43):
on the needs of your child.
Build yourself a village ofpeople who will be there for you
so that you can go travel andthey can help you with your
child or that you can go todinner with your husband to keep
that relationship strong.
So it's really all about to getto the point to where you have a
life that is satisfying to youand it's not all about autism
and that your life doesn't haveto be about that.
(30:04):
When you're out with people,you're not just talking about
autism, and then people arelike, oh my God, you know, Belke
only talks about autism whenwe're together.
You have to know when and whereis the right time and work
towards that, that you areindependent of that as a human
being, as a soul.
SPEAKER_01 (30:20):
Well, this has been great, great conversation, great
information.
Thanks for taking the time tojoin us today.
SPEAKER_00 (30:25):
Thank you so much.
I'm hoping I got a lot of pointsthat are useful for people.
SPEAKER_01 (30:30):
Absolutely.
It's been great.
Thanks again.
Thanks for taking time out ofyour busy schedule to listen to
our show today.
We hope you enjoyed it as muchas we enjoyed bringing it to
you.
If you know someone who has astory to share, tell them to
(30:53):
contact us at why notme.world.
One last thing, spread the wordabout why not me.
Our conversations, our inspiringguests that show you are not
alone in this world.
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