Tony Mantor: Why Not Me the World

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

• Tony Mantor

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Jess Tuff shares her emotional journey as a mother advocating for her autistic daughter while navigating the education system and societal stigma. Her story emphasizes the importance of understanding, acceptance, and the changes needed in how we approach autism, advocating for empathy and resources for families still facing challenges. 
• Jess’s experience in special education and her daughter's diagnosis 
• The significant role of therapy for both parent and child 
• Challenges with educators and the impact of stigma 
• The importance of individual support and understanding 
• Family dynamics and sibling relationships in autism advocacy 
• Hope for the future through technology and community awareness

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intro/outro music bed written by T. Wild
Why Not Me the World music published by Mantor Music (BMI)

Speaker 1:

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. 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 Jess Tuff, a devoted single mother, passionate educator 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 our guest. Thanks for coming on.

Speaker 2:

Yeah, no, thanks for asking.

Speaker 1:

It's my pleasure. I understand you're involved in the autistic community. What do you do?

Speaker 2:

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'd be nonverbal, 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.

Speaker 1:

Oh, that's nice. How long have you been doing this?

Speaker 2:

This is my second year at the school. My career was in early childhood development. I used to direct child care centers. I did that for 15 years and started a substitute teaching company for that center. It was hard to keep it staffed at certain times of 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 in ratio with staff to children. So I would interview, hire, train 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 my daughters went into the school district. So I quit my career and decided 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.

Speaker 1:

Yeah, that makes total sense. When did you start your business?

Speaker 2:

That was the fall of 2019 when I decided to do that. I was also nannying, so I was able to make it work and be there for my kids. I 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.

Speaker 1:

That makes total sense. Plus it gives you time for your kids.

Speaker 2:

I got to really support my daughters a lot more than parents 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 the field. You have a bias, so it's hard to trust your own judgment. 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 on wait list, 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.

Speaker 1:

What grade was she in school at that time?

Speaker 2:

Second grade. She's in fourth grade now.

Speaker 1:

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 her now.

Speaker 2:

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.

Speaker 1:

Wow.

Speaker 2:

So every day at recess this was happening to her and 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 notice 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 Fraser 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 as 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.

Speaker 1:

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?

Speaker 2:

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 process, 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 rapport. It 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.

Speaker 1:

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?

Speaker 2:

The assessment through the school. They declined an assessment and then I pushed and they finally gave her an assessment while she was on the wait list for Frasier. When Frasier gave her an assessment, she got a diagnosis of being on spectrum. They encourage you to put your child in a community of neurodiverse 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. Still going to a therapist and having them kind of brushed had someone in network who could assess her for CBD or ADHD, 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 forward to a future where we can have honest and accessible diagnosis tools with technology as well.

Speaker 1:

Yes, I agree. Unfortunately, it seems to be hit and miss 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. 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?

Speaker 2:

did the interaction go between you, her and all the other people around you. At that point I was almost hoping it was diagnosed as that because it seemed 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.

Speaker 2:

She had very strange behaviors that I didn't understand, like we would go to a softball game in the evening in 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. 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 your child 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.

Speaker 1:

Yeah, absolutely. How old is she now?

Speaker 2:

She's nine.

Speaker 1:

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 10, 15, 20 minutes. Once that's over, then everything's okay. But it's that 10 or 15 or 20 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 questioning yourself as a parent.

Speaker 2:

Oh, yeah, absolutely.

Speaker 1:

So what were some of the things that went through your mind before the diagnosis? And then what went through your mind after the diagnosis?

Speaker 2:

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'd 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, as we know, everyone has different perspectives, but one person thinks it's real for them. So what is our reality?

Speaker 1:

You are 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 she's going through most of the time. How do you address those people knowing what you know, without, as they say, blowing your gasket?

Speaker 2:

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. I 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.

Speaker 1:

Absolutely. No one wants to do that. It's really a tough situation you were in, so what did you do?

Speaker 2:

So I remember one day I went to the school, brought my mom, I asked the principal for a meeting. I sat down, I cried, I apologized, I let them win. I just didn't want that anymore in my life. When we got the diagnosis, it was more peace. I didn't feel a need to say anything anymore because everything changed. It all changed. It says a lot about how people treat each other when they don't know anything about each other judgments. There were a lot of things that happened and it places a lot of self-doubt in you.

Speaker 1:

Yeah, that's so tough.

Speaker 2:

What the parents go through. They deserve to be treated like they are the most important person in that child's life. Because they are Teachers are temporary Teachers, teach the way that they teach. There are great teachers that can meet lots of different needs, but when it comes down to it, it's a teacher teaching 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 over 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 see for themselves. I don't tell 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.

Speaker 1:

Yeah. Do you feel better about yourself and your daughter with the future that you both can have?

Speaker 2:

Yeah, no, I am. There's a lot of stigma around autism and it's unfortunate because if you meet one person with autism, and children sense the stigma from adults and then have a hard time accepting it for themselves because they'll see one child who's nonverbal and go. I don't have that Like it's a disease, when it's just how our brains work. I think if you nurture that for each child, it will become magical and everyone will succeed.

Speaker 1:

I agree 100%. What about textures? Does she have any problem with textures of food or clothes?

Speaker 2:

with textures of food or clothes. Oh yeah, she always needs to wear cotton. No tags ever. The softball game was a lot of things. It was the heat. It's great now because she can explain things, verbalize what's going on. She hates being hot, she loves to be cold. Textures food noodles with butter. She'll try new things when she sees me eating them. Sound, smell 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 up straight, smiled and barely said a word, but just enough to make a good impression.

Speaker 1:

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?

Speaker 2:

Growing up she would watch one movie at a time. For months we had a 45-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 to self-regulate Bouncy chairs. She has movement, repetitious movement, as well.

Speaker 1:

Yeah, so she has a sister. Is she neurotypical?

Speaker 2:

I don't think so.

Speaker 1:

Okay, is she younger?

Speaker 2:

Yeah, by 16 months or so.

Speaker 1:

Okay, how do they get along?

Speaker 2:

Not.

Speaker 1:

Okay.

Speaker 2:

They never have.

Speaker 1:

Oh.

Speaker 2:

My older one did not want a sister. She was a toddler barely saying a couple of words. I remember I would read her the You're Gonna Be a Big Sister book. I would sit next to her in her bed and she would start screaming, crying and yelling. No, pointing at the door. She's never wanted to share my attention. She laughs out at her sister whether I'm actively being attentive to her or not. I think she had some resentment towards her.

Speaker 1:

Yeah, okay, is there any hope that that might change in the future?

Speaker 2:

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 pies at their school yesterday pumpkin pies at their school yesterday. Afterwards I went to her younger sister's locker and there was a note for me and it said happy Thanksgiving, mom. I love you, even though you're nice to my sister when she's mean to me. And I was like I get it, but it's hard because it's clearly hard for her to understand the whole situation.

Speaker 1:

Yeah, that's rough. Hopefully when they get into their teens that can change.

Speaker 2:

Yeah, I'm hopeful.

Speaker 1:

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 that what you're going through, but I definitely do appreciate you telling it because it's definitely needed for everybody.

Speaker 2:

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 of 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 parents and trusting that, I knew you can't really expect a stranger to your child to know.

Speaker 1:

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?

Speaker 2:

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 the piece of paper 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. I remember at a holiday probably four years ago he asked if she was on the spectrum.

Speaker 2:

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. There's people that don't believe that she does. It's unfortunate. I hope that eventually they'll accept it. I remember when I worked at the child care 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 hustle.

Speaker 1:

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. 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, 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.

Speaker 2:

Exactly.

Speaker 1:

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.

Speaker 2:

I agree, that's. I think what it's really going to take is realizing what it is.

Speaker 1:

Yeah, that's the key, for sure. I really appreciate you coming on. It's been a fantastic story and a great conversation.

Speaker 2:

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.

Speaker 1:

It's been my pleasure. 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. 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 TonyMantorcom 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.