Jess Tuff: Empowering Autism Acceptance Through Advocacy and Empathy – A Mother's Journey in Special Education and Mental Health

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?
Joining us today is Just Tough, a devoted single mother,
passionate education and dedicated advocate for mental health, awareness, women's empowerment,
and special education. She shares with us her journey with
her autistic daughter, the emotions that accompanied her along the way.
Her story is truly inspiring and I'm delighted to have
her as I guess. Thanks for coming on.
Yeah, no, thanks for asking.
It's my pleasure. I understand you're involved in the autistic community.
What do you do.
I work in a school in special education. I work
primarily between the high needs autism room where some people
are like non There's about five or six kids in
there right now. They be non verbal, have sensory issues,
to children that are on the spectrum, but they're in
the gen ed classrooms. So I go individually with them
to their classroom to help support them academically, emotionally, socially,
to help them integrate.
Oh that's nice. How long have you been doing this?
Ye, this is my second year at the school. My
career was in early childhood development. I used to direct
childcare centers. I did that for fifteen years and started
a substitute teaching company for that center. The problem was
that it was hard to keep it staffed at certain
times that the year. Other times you would have an
abundance of people, but there was times of the year
where you had no one and you can't be open
without being a ratio with deft children. So I would
interview a higher trading and then I would direct the
substitute teachers based on their qualifications between centers based on
the needs of the centers at that time, and then
at my daughters when in school district. So I quit
my career, And you said I was going to start
my own business because I was running other people's businesses
for so long I knew how to do it.
Yeah, that makes total sense. When did you start your business?
Was the fall up twenty nineteen when they decided to
do that. It was also nannying, so I was able
to make it work and be there for my kids.
Really got spoiled being able to be with them all
the time, see all of their development as it unfolded,
hear what was going on all the time. I believe
that the small things make up the big things. If
you can understand why something is happening, then you can
fix it.
That makes total sense. Plus it gives you time for
your kids.
I got to really support my daughters a lot more
than Eric's normally do. I knew my oldest daughter was
a little bit unique. There's that weird thing when you're
a parent. It doesn't matter if you're an expert in fields.
You have a bias, so it's hard to trust your
own job. I asked people, do you see anything I'm
not seeing or is there anything I should be aware of?
And they assured me nope, nothing at all. There were
a lot of other kids at that point in time
showing some unique behaviors and emotional struggle. It wasn't until
she went into the school district and it didn't really
have that support system in place anymore, and it all
went downhill. I really had to fight for her to
be treated as an individual, which led me to where
I am now, A year round, weightless, a year of
being bullied for the diagnosis. To get them to support her,
all they had to do was have someone stand next
to her outside at recess and help her.
What grade was she in school at that time?
Sucking grade?
But she's in fourth grade now since she's been diagnosed,
have you been able to get therapists and help for
her so that she can integrate within the school system
and with her friends? More? Are better things happening for now?
Yeah, she's been in therapy since before the diagnosis. She
actually asked me if she could see a therapist that year.
She told me what was going on at school. They
were playing a game at recess her friend. It was
called danger, and the person that was danger everyone would
point laugh and run away from them. That was the game.
But she was always danger.
Wow.
So every day recess this was happening to her and
she she'd always depended on myself or her sister to
help her make friends and socialize. She struggled in school.
It wasn't quite as accepting. After talking to a lot
of different experts in autism. That's the age when the
other kids noticed you're a little bit different. So that
was a really hard year for her to go through.
I got her on the wait list with Frasier after
the school denied an assessment, got her in therapy the
next year. After the assessment, she had the best teacher
in the entire world. He really turned her opinion of
school into something completely different. He's brilliant. He looks at
the students like I look at children and their own
unique individual and the label didn't really matter to me
because she is who she is. And that's the same
way with all the other people in the world, not
just kids. We're all unique. If we could all look
at ourselves and get to know who we are, it
would be a lot easier for us to be accepting
of other people.
I totally agree. People have to have some self reflection
at times and realize that others need help and sympathy
and empathy as well. Is this what prompted you to
make a change to get into the schooling and become
more of an advocate for autistic people?
So I got back in the school district. I think
there was a little bit of that wanting to learn
more because through the assessment, I had to do all
my own research. The process makes you feel like there's
got to be something more that you're missing. It felt
like I was breaking the law asking for an assessment
for information about her mental health. I started therapy during it, too,
and I asked my therapist if I could be assessed
if she did that. There was no response, which was
weird because we have such a great report. Was confusing
because everybody's so indirect. The more research I did, the
more I found out that there's not enough research with
technology where we're at. I'm really excited because I feel
like we're at the point now where we're about to
get data from everywhere around the world, and that's going
to give us so many answers that we didn't have before.
I'm looking forward to that.
Yeah, I think information is coming from all angles. That's
truly great. Did you finally get a diagnosis or did
they still push it to the side.
The assessment or the school They declined in assessment and
then I pushed and they finally gave her an assessment
while she was on the wait list for Frasier. When
Fraser gave her an assessment. She got a diagnosis of
being on the spectrum. They encourage you to put your
child in a community of neurodivers individuals to embrace that
about themselves, for you as a family to talk about it,
to embrace it in all these things. It gave me
a bit of freedom as well, because it was such
a scary process. I feel like the school is like
you're doing something wrong and I just don't quite understand.
It's still going to a therapist debt and having them
kind of brushed off. Her doctor had someone in network
who could assess her for BBD, for ADHD and not
but not autism. It was just strange how there's so
many experts out there but nobody could help diagnose this.
I'm really looking for to future where we can had
honest and accessible diagnosis tools with technology as well.
Yes, I agree, Unfortunately it seems to be hit and
missed depending upon where you live. Each areas have different
amounts of money to spend different things in place, so
your living area is a big, big deciding point for that.
Once you did get the diagnosis and found she is autistic,
did that change anything for you? Did you approach anything differently?
How did the interaction go between you and the doctor,
how did the interaction go between her and all the
other people around you?
At that point, I was almost hoping it was diagnosed.
Is that because it seems so clear to me after
doing so much research and checking all the boxes. There
was so much self doubt during the whole process because
I'm reading and everything points to yes, yet all of
the people I'm talking to are not everything that I
was reading. It aligned with how I parented and how
I teach to meet the child where they are and
to support them how they need to be supported. I
felt a freedom, like it was okay to parent the
way I was parenting, which I didn't have before that
because she had so many behaviors growing up. She had
very strange behaviors that I didn't understand. Like we would
go to a softball game in the evening and the summer,
and she would be great the whole car ride, get
her in the stroller, we'd be walking, we'd make it
to the field and she would just lose it just
because I couldn't explain it. Everybody would look at me
like I should get my kid under control. I would
always just leave and I would get judgment for that
and not staying and making her be quiet or stop crying,
or your child, and when she's crying because something is wrong,
there's something going on with her and there's no other
reason for her to be upset. So it gave me
some peace really that it was okay what I was doing.
Yeah. Absolutely, How old is she now?
She's nine?
Nine? Okay. Some people, unfortunately that do not understand autism.
They don't know the difference between a meltdown or a
child just having a tantrum. They don't realize when an
autistic child is having a meltdown it can last ten, fifteen,
twenty minutes. Once that's over, then everything's okay. But it's
that ten or fifteen or twenty minutes of going through
it that people have to see and they just unfortunately
do not understand it. So I'm guessing before you got
the diagnosis, things like that was happening with your daughter,
you were probably questing yourself as a parent.
Oh yeah, absolutely.
So what was some of the things that went through
your mind before the diagnosis and then what went through
your mind after the diagnosis?
Really is like a sense of help, like a torture
to intuitively feel you are doing what's best and to
the best of your knowledge, to your abilities, what I
was doing would work, she would We'd go in the car,
I turn on the AC and start driving, and she'd
be totally fine. It was so confusing. There's a lot
of shame. Their parents have a hard job and society
doesn't always support them in the way that it should.
It was hard. I did a weird thing during the
hardest part of it. I really internalized most of it.
I'm an introvert naturally. I like my quiet time. I
like my peaceful time alone to reflect, so I did
that a lot. Once I had clarification of what was
going on, it was like being set free. I felt
confident speaking up and out about it because I had
the answer key. It wasn't me relying on I'm right
and all the people are wrong just because I think
I'm right. Because we know everyone has different perspectives, but
one person thinks it's real for them, So what is
our reality?
You were so correct. I tell everyone that I work with.
Perception is reality. It may not be true, but is
that person's perception of you? Is that person's reality of you?
How did you address some of those things? I mean,
you know your child, you know what going through most
of the time. How do you address those people knowing
what you know without, as they say, blowing your gasket.
With the school. I think I was as close to
blowing my gasket as I've ever been before during the
battle for my daughter. The treatment it was and it
didn't make any sense, like I'm a really nice person,
a say, remember even telling them that people like me normally,
but this isn't right. Before we got the assessment, I
had enough of feeling like I was feeling. I had
enough of being angry, and I didn't want to hate anyone.
Absolutely no one wants to do that. It's really a
tough situation. You were ran, So what did you do?
So? I remember one day I went to the school,
brought my mom, I asked principal for a meeting. I
sat down, I cried, I apologized, I let them when
I just didn't want that anymore in my life. When
we got the diagnosis, it was more peace. I didn't
feel the need to say anything anymore because everything changed.
It all changed. It says a lot about how people
greet each other when they don't know anything about each other.
Judgment that there were a lot of things that happened
and place there is a lot of help doubt in you.
Yeah, that's so tough.
What the pins go through. They deserve to be treated
like they are the most important person in that child
life because they are teachers are temporary teachers teach the
way that they teach. There are great teachers that you
meet lots of different needs, but when it comes down
to it, it's a teacher teaches students that all learn
differently because we're all unique and they're not meeting the
needs of all students. It really led me down the
path of technology. I was introduced to VR a little
ever a year ago, and it was a no brainer
for educating by experience to really immerse the student, whether
it be a child or an adult, into an experience
where they can deeper themselves. I don't help people, my opinion,
often because perspective is everything and everyone has their own.
I like to give them the facts and let them
see the learning by experience, but in a safe area
where you can show people what others are going through too.
Yeah. Do you feel better about yourself and your daughter
with the future that you both can have?
Yeah? No, I am there's a lot of stigma around autism,
and it's unfortunate because if you meet one person with autism,
but one person with autism and children sends the stigma
from adults and then have a her time accepting it
for themselves because they'll see one child who's non verbal
and go, I don't have that like it's a disease,
when it's just how her brains work. I think if
you nurture that for each child, it will become magical
and everyone will succeed.
I agree. What about textures? Does she have any problem
with textures of food or clothes?
Oh? Yeah, she always needs to wear cotton, no tags ever.
The softball games, it was a lot of things. It
was the heat. It's great now because she can explain things,
verbalize what's going on. She heats being hot. She loves
cold textures, food, noodles with butter. She'll try new things.
When do you see me eating them? Sounds, mouths, There's
so many things, but they're at different degrees. Some things
are less visible to people, but that's because they don't
know her. In the research I've done, women are really
good at masking. We're resilient and smart. We're good at
fitting in. Did that? She still does it in front
of people she's not comfortable with. I saw it when
she got into second grade, how she would behave in
front of strangers. She stood straight, smiled and barely said
a word, but just enough to make a good impression.
Yes, it is very well known that females are very
good at masking. Now, what about focus? Many autistic people
are very focused. When they have something that they focus on,
they just don't give up anything until they get through.
That is she very focused as well?
Growing up, she would watch one movie at a time
for months. We had a forty five minute drive to
my work every day. I had DVD players in the
back for my daughters. I would have to force her
to watch something new before she would catch on, and
then she would go with that one until I would
get her to do a different one. But that was
definitely it. She definitely has several trampolines and different things
that she can use it to self regulate bouncy chairs.
She has movement, repetitious movement as well.
Yeah, so she has a sister. Is she norotypical?
I don't think so.
Okay. Is she younger?
Yeah, by sixteen months or so.
Okay, how do they get along? Not? Okay?
They never have. My older one did not want sister.
She was what a talk, barely saying a couple of words.
I remember. I would read her the You're going to
be a Big Sister book. I would sit next to
her in her bed and she would start screaming, crying
and yelling, now pointing at the door. She's never wanted
to share my attention. She lastes out at her sister,
whether I'm actively being attentive to her or not. I
think she had some resentment towards her.
Yeah, okay, is there any hope that that might change
in the future.
It's really sad because her sister is completely opposite in
so many ways. She would love nothing more than for
her older sister to be her best friend. She helped
her older sister make friends her whole life. She's so kind,
she has the biggest heart, so much natural empathy. I
went to help her and her sister make pumpkin highs
that they're school yesterday. Afterwards, I went to her younger
sister's locker and there was a note for me, and
it said happy thanks give me mom. I love you
even though you're nice. To my sister when she's mean
to me, and I was like, oh, I get it,
but it's hard because it's clearly hurd for her to
understand with the whole situation.
Yeah, that's rough. Hopefully when they get into their teens
that can change.
Yeah, I'm hopeful.
Yeah. I think you've brought out a lot of very
very good points. I think a lot of people are
going to be able to relate to your story. That's
why I do this podcast. It's about people like yourself
telling stories and hopefully others hearing it and then they
can get something out of it that will definitely help
their situation. So it's very tough at what you're going through,
but I definitely do appreciate you telling it because it's
definitely needed for everybody.
Oh man, that's tough because it was hard. I have
so much hope though, with technology and innovation and there
are so many people rising up right now geared towards
a more equitable and inclusive future, they're going to be
gaining so many tools to help embrace people who have
different neurodivergent needs and learning styles and passions. I would say,
embrace your child for who they are and to help
support them regardless if anybody else is receptive to it.
But to understand those people that might not be receptive
just don't know because it was hard enough being the
parent and trusting that I knew. Can't really expect a
stranger to your child.
To know yes, absolutely, that's the best words that you
can say. How has your family handled this? Have they
embraced your daughter with her autism? Has that been a
good thing for you?
My mom has always accepted my daughters for who they are.
I think that even during everything in the past couple
of years, she didn't know. I remember trying to educate
her throughout the whole thing, but I was doubtful because
I didn't actually have a piece of beaver that says yes,
it's hard to defend when you don't have that. But
once we did have that, she's been educating other people
who have no clue. One of my cousins, he has
a son who is on the spectrum. I remember at
a holiday probably four years ago, he asked if she
was on the spectrum. And so there's some family members
that once you're joining together now because you have that
common bond, there's other people that you just know that
they don't. Well, there's people that don't believe that she does.
It's unfortunate. I felt that eventually they'll accept it. I
remember when I worked at the childcare center, I asked
other expert teachers about it. I didn't really want anything
to be wrong with my daughter because I didn't know
what it was, but I knew what everybody looked at
it to be. The more we talk about it and
bring awareness to it, I hope that will help other
parents see it for what it is and to accept
it in their own hustole.
Yeah. Yeah, absolutely, That's all we can hope for is
for people to at least try to understand. Most people,
it's the big unknown. Yeah, I'm the perfect example. Before
I started this podcast, I knew absolutely nothing about autism
other than i'd heard the word. I didn't know anyone
that was autistic, and so it was a complete unknown
entity to me. Now a couple of years later, I've
found that I do know people that are autistic. They've
come out and told me because they feel like they can.
The biggest thing that I think everyone needs to do
is tell their stories to get it out there, create
more understanding. Because we can accept it, we can be
aware of it, but until we understand it, it will
stay a complete unknown unfortunately.
Exactly.
Yeah, it's tough. I'm just hoping that we can just
continue to do what we're doing, get more information out there,
and then just make things better for everyone involved.
I agree, that's I think what it's really going to
take is realizing what it is.
Yeah, that's the key for sure. I really appreciate you
coming on. It's been a fantastic story and a great conversation.
Oh, thank you, thank you. I'm really grateful for your advocacy.
I'm grateful for you supporting parents needed for so many
So thank you.
It's been my pleasure. Thanks for taking the time out
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