Susan Morantes: A Mother's Journey through Autism's Challenges

Welcome to Why Not Me the World?
Podcast hosted by Tony Mantor, broadcasting from Music City USA, Nashville, Tennessee.
Join us as our guests tell us their stories. Some
will make you laugh.
Some will make you cry.
Real life people who will inspire and show that you
are not alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Mantor. Welcome to Why Not Me the World.
Today's guest is Susan Morontez. She has an autistic son
and works at the Dan Marino Foundation, so she has
a great story to tell us. Thanks for coming on, Susan, Oh,
you're quite love. So what age was it that your
son was diagnosed autistic?
Well, he my son was actually diagnosed when he was
probably between two and three with a severe language delay,
and then he wasn't like really diagnosed with autism until
he was four, when he thought neurologists.
What was he going through? That made you realize that
something wasn't quite right and you had to find out
and get a diagnosis.
Well, I mean it was you in the beginning. It
was just the delay in language. He had some words
but not a lot he had been At the time
he was with a babysitter. The only spoke of Danish,
So the pediatrician was thinking that that was maybe the
reason that his language was delayed. But then it then
became pretty clear that he really wasn't picking up the
language like he did. At the time, I didn't know
the other symptoms of autism.
I didn't even really know what it was.
So looking back, I see other things that maybe were there,
you know, lining up toys, not really engaging with another child,
more parallel play. But at the time, it was the
language delay that was the concern.
Okay, and how old is he now?
He's now thirty three.
Did he have any other things other than just language
that was a concern for you?
Yeah, and I think yeah, it was pretty much, you know,
diagnosed it was an intellectual disability or you know, some
other kind of developmental disability. Like I said, you know,
he was really diagnosed originally with language delay, and then
it became more so. The only thing that was relevant
in my mind at that point was Rayman when he
was diagnosed, because that's the only referct I had.
Sure, I've talked with several people that pretty much said
the same thing as you. That was what was in
the minds. But now people found out there's so much
more than that, right right.
And well because they really there was no other thing
out there about it.
We did.
Now you see more shows with children and adults with autism,
but that was not something that was happening at that point.
So what went through your mind.
That's a lot to cope with when you are new
to something, not knowing what it is. I'm sure that
there was a lot of things that you had to
think about.
Well, I was very upset because I really didn't know
anybody else that had a child with autism and U
so it was cures and none. It was okay, well,
what are we going to do? I mean, at that point,
he was already in a special needs preschool, but it
really wasn't meaning his needs because it was just a
large variety of children with different disabilities, some physical, some intellectual.
So there really wasn't services that were specific to him
at that point.
That makes it real tough. So you sat down and
thought about different things. I'm sure what was your next step.
Well, it just happened at the time that coworker had
read that the Dan Marino San had autism, and you know,
we were like, oh, okay, well then that brings some
light to the subject, but that we really still.
Didn't have a lot of information.
And we were fortunate enough my husband was fortunate enough
to be able to meet Dan and from there on
him and his wife Claire were great. I mean, I
told us basically what we needed to do, which entailed
us moving from Miami, where we basically have lived our
whole lives, up to Brower County, where there was a
preschool called the Bodwin Oral School that was specific to
the needs of children with autism. And you know, we
did that and that made all the difference and how
my son Sean was doing well.
That's great to hear.
But having to move, any move is a pretty big move,
especially when you're going to a new area.
No, I mean it's not.
It's a long way away, but you know, a lot
of our support system was in Miami. I mean you're
talking a lot a good day thirty to forty five
minutes just having been lived there, you know, basically our
whole lives. It was difficult to up route and go
and my daughter at the time was twelve and it
was very difficult for her because she grown up with
a whole group of family and friends that were there.
They all went to the same school.
You know, she had her group of friends, so it
was very difficult for her to move into a whole
new environment.
But he did it.
That's great because moving, especially for her kid, is just
so very tough.
Oh yes, it was.
I mean it's always going to be a struggle. You
always have to advocate for your child. The preschool was amazing,
but he was only eligible to be there one year.
So then he went on to the typical public school program.
But at the time they were starting to get a
little bit more number wide. We still had to drive
it'll probably a good twenty twenty five minutes in the
morning to get him to the school that had what
they called at the time an autism cluster program that
was specific for children with autism. Now almost every school
has a program for children with autism. So it, you know,
goes to the fact that the amount of children being
diagnosed has gone up to potentially.
It sure has. So what age was he during this transition?
He was for how did he handle the changes at
that point in time?
And then he did well.
He started going out probably in about third grade till
like he'd go to music classes or he's go to
pe where he was mainstreamed with the typical population and
you know, elementary school that wasn't bad, you know, sometimes
though attended. We had a principal change in fourth grade
and that just changed the whole attitude the school, where
the principal before was definitely more interested in engaging, engaging
children with autism, being more inclusive to a principle that
was not, you know, so they were stuffed in the
back and the you know, the the trailers. So it
really wasn't an ideal situation. But at that point he
was getting ready to graduate and go into middle school,
which was great the first couple of years because he
had a well really the first year he had a shadow,
but she let him be very independent, so he was
going to you know, basically all mainstream classes. He had
a couple that were still in the self contained, but
for the most part he was you know, making his
way around the school making some friends.
But then the second year.
He had a different shadow, and while she was great,
she just became his only contact. He dropped the pencil,
she'd pick it up. She ate lunch with him. I mean,
she was with him all the time. So we saw
that he was even though he was mainstream, he was
becoming left independent.
Wow, So what did you do to change and turn
that around?
So we looked for a private school, which we did
find one where he completed high school.
And you know, it was okay. It was he had
friends there.
It was very small, but you know, at the same time,
instead of going being one on one, even though he
was in a bigger school, he went more into being
like a typical classroom of fifteen or sixteen students, So
it wasn't that he was so isolated, although all of
the students had, you know, some kind of special need
or challenge, you know. And then at the end of
his schooling, I guess he did a well for secondary anyway,
he did a program called Project Search that was at
the Zoo in Miami. So that had us move back
to my me for a period of time. And he
did that program, which was great, but he you know,
it didn't come out with a job at the end.
So at that point we had made I was still
working in Broward County. You know, we made the decision
to move back to Broward and that at the same
time was when you know, the Dan Marino Foundation had
started doing more of the employment program, so he'd been
in all those and then he actually did graduate from
Reno Campus and he's now working.
Uh, you know, he's been working.
Well, that's great. So is the speech issue taken care
of completely? Oh?
Yes, yes, yes, he uh, you know, I'm totally verbal now.
There's there's no incidence of any delay. Uh. You know,
still has a real tough time with social aspects.
Uh, you know, would prefer to just be at home,
be in his room, you know, but we have to
push him to come out.
So if you push him out, does he get out
and do some things and socialize?
Yeah?
Yeah, And you know he's still he participates with programs
that the foundation runs. You know, he does have one
friend that he's had since preschool and they'll go out
and do things sometimes. But unfortunately the males the majority
of time is you know, spelled with us in the
family home. You know, before COVID, he had moved into
an independent living community in Lakeland, which was great for
almost a year and that certainly did make him much
more independent. But then COVID hit and they were having
all kinds of issues. My husband had some health issues.
I knew that if I left him there that I
might not be able to go get him if he
got vic And so we made the decision to come
back with the hopes that this would all be done
in a few weeks.
And obviously that's not what happened.
So at this point, and then he got a job
down here, So at this point he's still in the
same situation living at our house.
Well, we all thought that situation wasn't going to last
as long as it did. So where's his sister? And
all this now is she's still local sisters.
Lives in Denver, Colorado with her husband, and I mean
that relationship is not great. They don't you know, they
see each other several times during the year, but uh,
they tend to.
Get on easy.
But you know, we've had the discussion too that as
his dad and I get here a older, that that's
who he's going to really need to rely on. So
we're right now trying to figure out what that all
looks like. Uh, you know, are we looking in a
few years that all of us moving to Colorado to
send him up there. There's a housing development similar to
the one he within being being built in Miami that
hopefully will be ready in next couple of years. If
that maybe where he's at or is there something else
that we haven't quite discoverned as of yet.
Well, time has a way of showing you what is
needed and how it's going to go. So how is
the dynamic between the two of them and do they
get along?
Okay?
Well, I mean I would say probably it was a
little better when they were younger. She was the older sister,
he was the baby. So now it's just been a
little bit. You know, they pecked every now and then,
you know when we go on. We had been on
a couple of vacations over the summer together with them,
and he interact then, but again sometimes it's more advers room.
This is you know, but it's almost like the sibling
kind of typical relationship that you have. But she's always
said she's not wrong and that he should be doing
more than he's doing, and that's that's the truth. But
just haven't quite figured out what that looks like yet.
Well, it just takes time to make things work properly
the way you hope they will. What's his day to
day's schedule. Look like, is he working now? And if
he is, does he like what he's doing?
Well, I mean, he's not crazy about the job that
he's at, but you know, it's a good job and
they work well with him there, and he works well there.
Uh so, you know, but when he says, well, maybe
I want to do something else, I said, well, then
you need to work at that. You need to look,
you have to figure out what it is that you
want to do. And uh he hasn't really you know,
taken that step and uh you know, and again this
where he's at is really great, and so it's it's
hard to say, well, okay, well try something else that
might not work. And he's been there now over two years.
So it's tough to leave a job that treats you write,
especially when you don't know what you kind of get
yourself into. What what are some of his likes and
dislikes In his.
Younger years, his is more you know, probably again you know,
it's a social but it's also becomes a little bit
of passive compulsive about things. Uh So, you know, it
just depends. When he was younger, it was Star Wars,
like everything was Star Wars. And then you know, I mean, baby, baby,
it was binosaurs. Uh, you know, and now you know
the politics and history, which you know tends to cause
him ang depending on what's going on. So I guess
it does to all of us.
Not unusual.
I've had people tell me that the kids get very
focused and will not give up on anything until they
know everything there is to know about it and have
done so much intense research.
Is your son focused like that?
He is?
I mean he I always fell him.
You could probably win at Jeopardy, particularly if they had
a lot of history geography, because he just knows everything
about that. And I'm like, how do you know all
this stuff? And he goes, oh, well, I research and
I read and he does. But I'm like, how can you? Like,
there're sometimes I don't forget to do something very typical,
you know, like oh I forgot to brush my teeth,
But then he can remember every president and vice president
when they were president, you know, But doesn't the stuff
that people generally do everyth day is not always his
dronk suit?
Sure?
So I've also been told that a lot of autistic
people are very literal in their thinking, So how is
his thought process differ from others around him in the family, I.
Think, you know, to a respect.
I mean, if he has a viewpoint on something, it's
very difficult to change that viewpoint. And so you know,
that's one thing. I mean, he he does and understands
how inferences and that kind of thing, So not so much,
not really something that I see as much with him.
Okay, I've also been told that a lot of autistic
children can be very unfiltered, and even though that's good
in life to say what's on your mind, sometimes it
can put us in unique situations that aren't so good.
So how is he on his thought process as being filtered?
Unfiltered?
He that does happen.
But we've worked really hard on that because we know,
especially these days, that you know, you insult somebody or
you say something, even though you don't mean it in
a harsh way, people aren't always going to take it
that way. So uh, you know, I mean when he
was a little guy, you know, he says something like, oh,
that lady is so fat or something like that, and
we really worked hard on that. You cannot obey that.
That's not first of all, it's not nice and deeconitely.
You know, you you guy stuff that you think is
okay and it's not. Some other people take exception too,
and you know, unfortunately that can work out bad for everybody.
It can.
But it sounds like you've done a good job with
him there and that doesn't seem to be an issue
at all. How about friends? Does he have any lifelong
friends or new friends? What's his social life look like?
Yeah, I mean they'll they'll know, I say, not not
real often. You know, once a month or so that
you know that Andrew will come over and they'll they'll
do legos or play video games. Are neither one of
the big talker. So that's the kind of their thing
is they're doing stuff while they're there. You know, they
sometimes will go to days on that Dura movie, but
you know, not as frequent as I would like to
see that happen. Uh, And the like you said, with
the foundation, we are working now on programming for our
alumni and really trying to schedule a lot of different
activities that that I would interest people in different things,
and so he just fined up for that. It gets
a little bit difficult to do anything during the day
because of his work, but we're doing things in the evening,
So like he's looking forward to the Halloween you know
party that will be having here at the end of
the month, and uh, you know there's other things that
will be coming up that I know that will be
an interest.
That's really great. The more that he can get out
and do things, the more social he becomes. Hopefully that
will help him a lot. What are some of the
things that he really likes to do.
Well, I mean, geography is big.
You like to read about all different countries and eing
to know where everything's located. He's a little bit of
those swootie So before when he was younger, he really
kind of what we would say, he'd only eat beige food.
So it was like, you know, very specific food. We
had done a trip back in I think it was
twenty thirteen to with him at a trainee and cruise
and we're like, listen, you got to learn to eat
other stuff.
And for some reason that really opened his.
Eyes or palette, I guess, and he started trying new things.
And now there's really nothing he's afraid of trying, and
he eats stuff that I wouldn't even eat.
But so he you know, it's very open it up.
So that's always a big interest in him is food
in different regions.
And.
Yeah, you know, unfortunately a politics as well, but we
really tried to steer away from that because again, people
don't agree and if you want to, like you know,
thank got on your own what you want to think,
but to express those views to other is not always
the best Keith and.
Eric, so true.
Sounds to me like the fact that he's doing better
with the food is really a plus because I know
a lot of people that say that their sons or
daughters just won't eat things because there's certain textures.
So I think that's great.
Right, So you know, the the food, you know, learning
about different countries.
I mean that's what we really ask that he focused on.
Well, by focusing that way, it sure sounds to me
like it would make your life and his a little
less uncomplicated.
Yeah, I mean, he really is.
It made everything easier because before it was like, okay,
well we go to this restaurant, what's it going to eat?
And they have you know, and now it's like to
eat anything, So it's it's fine, It's like easy.
That's just so good.
Now, what about clothes, I know that textures of clothes
sometimes can cause some issues. Does that bother him at all?
He doesn't. He just prefers to be casual. You know,
he wears long pants to work. I mean that's that's
what he needs to wear in his job. But he
is definite preferences, you know, a T shirt and shorts.
But you know, it's not like he has any real
kind of aversion aversion to anything.
That's really good.
That makes things so much easier in purchasing clothes and
you don't have to worry about things. What about housing now,
I know you said that he did live in a
place that he was by himself, and then because of
the pandemic, you brought him back. Do you see him
getting back out there and getting into any housing like
he had before.
Well, that's kind of what we're trying to figure out now.
The community within before we did see that that was
a good situation for him. You know, he was they
had you know, more independent, definitely had to do a
lot of stuff on his own that he doesn't necessarily
have to do at home. Uh, and they all had
activities going, so you go to the activities. Still wasn't
the most social butterfly, but you know it wasn't he
couldn't rely on us, you know, to be that social
aspect for him.
So now that he's been home, do you think that
he'll be ready to get back out there and be
independent again?
And do you think that he'd be okay?
Well, I think, you know, some of that is us.
The most difficult thing is just almost like I said,
you know, remembering the small stuff like you go to work,
you know, make sure that you have your wallet, your bad,
your almost you know. And and and that's on us too,
is that we'll say, well do you have your bad
and do you have your phone? And so I think
it's going to be a little bit you know, it's
got to be training to us as well. But I
mean that's that's the thing, you know, is being able
to be independent. It's just scary that we're not here
what happens. And so yeah, so that's where I think,
you know, and where his sister is definitely a big
part of that is that you know, we have we
have to figure that out. So that's what we're trying
to do is figure that out.
Well, that's a tough thing because everyone that I talk with,
that's the thing that's foremost on their mind is what
happens to their child if they're not around. So do
you think where he's lived in a community before that
there are communities around your area now that he can
move into, adapt and then find a way to move forward.
I think that, you know, when he was living in Lakeland,
that that did give me some hope that that was true.
You know, Unfortunately, these communities are really hard. It's hard
to sustain it. And so we're you know, looking at Okay,
well do we try to find something in Colorado or
are we looking at this place in Miami because we
do still have you know, my niece and my grandniece
is with here, so we do have you know, younger
family members and also some friends that live nearby that
if that was the outcome, that we would hope that
he would be there. But also, I mean, I think
that that this particular community is doing things a little
bit smarter and realizing that that's what parents and the
individuals themselves are looking at, that this is where they're
going to be. I mean, obviously the more comfort level
of having him closer to his sister, but if there's
not a situation there that's going to be beneficial, then
you know, it might just be this this situation, but again,
it's just stuff we're trying to figure out. And I
know that every parent looks at that because it's large.
You don't know, that's so true because you just don't
know whether to keep him the way it's going, or
if you do moving to an apartment or whatever, then
you have to be kind of concerned on what his
daily routines are going to be so that he doesn't
fall into this rut where he doesn't expand at all.
So it is very, very tough for sure.
Yeah, yeah, And I mean that's that's been where it's
a little bit hard for me because I you know,
that's the thing. I know that he can if I
put him in an apartment, he could more than likely
live independently in his apartment.
He can figure I how to get to work back,
but that's not all you do.
And you know, so I really likely need that situation
where there's other engagement and you know, you go live
in an apartment, it's not the case typically. You know, I
was by my husband's aunt is living in Century Village,
which is like a fifty five, but they're really set
up that Okay, well, you know they're here and then
if they need more care, that's there, you know, really
until the end of their life. And I said, I
said to rastly my husband, I was like, oh, maybe
we should get shot a condo that you get but
key until he fifty five, and it's up where we
definitely are going to be in the picture. So you know,
it's just it's it's tough.
It is.
I talk with a lot of different people, and there's
one person here in Nashville that I know. She runs
a charity called Our Place in Nashville. What she does
is work with autistic people and special needs, trying to
get them housing so that they can have that little
community of themselves. And it is very, very tough to
make that next step and move forward not knowing what
the outcome will be.
Well, I'm in that.
I mean, really our focus is trying to figure out
what that next step is. And you know, I mean,
I I don't mind having him at home. I mean,
at there's a comfort level there knowing that he's okay
and you know that that we can make sure that
he's got whatting me.
But at the same point, realistically we.
Know that or we you know, we're not going to
be there, so we've got to figure out what it is.
So it's hard.
You know, you look at other friends and they're you know,
traveling and doing stuff, and not that we can't do that,
but you know, most of the time we got to
figure out, Okay, well can you come with us?
Can he knock come with us?
You know, it does, it does change the kind of
empty nest versus not empty nest and not knowing when
that will be or if it will be. Uh, that's
that's a hard hard but it's a different outlook.
It is because as a parent you always want your
kids to grow up and grow out, but in your situation,
you always have to worry about where he is, what's
going on, is he okay. There's a lot more dynamic
there than what the average person has to deal with,
so it can be very tough for you. I can
sure only understand that.
Well, yeah, I mean not so much at home, but
when he was in Lakeland, Uh, when he was at
the community, I mean, and it was it was silly,
but it was a Halloween. He was going to the
Halloween party. And uh, you know, he always has this
phone with him, and I he left his phone in
the room, right. So she is like, I'm calling and
calling and calling and calling, and I, you know, we
had like the little like whatever at three and sixty
and it wasn't moving and and I could find you know,
I had.
No idea where he was.
And I called his drewmates, guardian and the whole thing.
And she's like, well, I'm not there, but if you
don't hear from let me know, I'll go over.
You know.
She goes, I'm going to call some people and see
if they be And finally before that it all happened.
He then he called back and he goes, oh, I
was at the you know, Bay ride and at the
party and I just forgot my phone. So that's the
only time I really remember being panic. I did a
lot with my daughter in college. It just became a thing,
you know, with him. It was a difference scenario.
Sure, and totally understandable. You worry because you want the
best form, and every time that some little thing goes wrong, sometimes,
as human nature has, we think the worst. So now
that you've gone through everything that you've gone through, you've adapted, grown,
he's grown, you're learning your new steps. What would you
tell people that are just starting out what to expect,
how to deal with it, and what they can do
to help themselves and help their child.
Well, I think for new parents it's definitely you know,
talking to other parents and support groups and organizations that
help people with children with opt to figure out what
those resources are that you need to do, because you
don't always that's not always evident. If you go to
a PTAHR genurologists, they might hand you a bunch of
stuff and say here you are. So I think that
that's important. As the child ages into adulthood, then you
really need to know all of the things that he needs,
he or she needs at eighteen, you know what guardianship,
you know what kind of the mid waiver supports all
of those things.
You need to learn those.
Resources, you know, and then as they become adults, you
you really I mean, it's really the smart thing to
get with an attorney and make sure that everything's set
up so that if you are not around, my husband's
not around, to make sure that at least financially wise,
that you're in a good spot. You know, the other
stuff again, still try to figure it out, like whereas.
You're going to live, what's you're going to do. It's
so it's kind of that.
Progression, but not always what is the I guess at
the end of the ring bookcase, I didn't thing look
like I Yeah.
Well, those are good things to do, for sure, because
everyone is different and every situation is different. So they
have to take and plan and make sure they've got
everything under control so that way, if something does happen,
they can at least feel good that they've planned well
and supported what they needed to do to take care
of their children.
Yeah.
I think you see it a lot because everybody says this,
but when you meet a person with autism, that one
person with autism, because everything is different for each person.
Even though you think you like I was there, Oh yeah,
you kind of like Sean, but then there's things that
are different, and yeah, it's it's it's it's fascinating, but
can make life difficult. You know, when you're trying to
help someone, they've got a lot of different needs or
things that you really don't know.
What to do with.
Absolutely, that's the most difficult part of being a parent
for an autistic child is trying to figure out everything
they need and what their needs will be. It's just
a never ending process. So I really have to say
this has been a great discussion. You've given a lot
of great information and I really appreciate you taking the
time to come onto my podcast.
Oh well, thank you, Tony. I do appreciate it as well.
It's the more information people have the better.
Absolutely, I totally agree, and once again, thanks for coming on.
Thanks for taking the time out of your busy schedule
to listen to our show today. We hope that you
enjoyed it as much as we enjoyed bringing it to you.
If you know anyone that would like to tell us
their story, send them to tonymantor dot com contact then
they can give us their information so one day they
may be a guest on our show. One more thing
we ask tell everyone everywhere.
About why not me?
The world, the conversations we're having, and the inspiration our
guests give to everyone everywhere that you are not alone
in this world.