Understanding Stuttering: Personal Stories and Professional Perspectives

Arnold00:00:00

It's estimated about 1% of the adult population stutters, which equates to almost 3 million people who stutter. In the United States. Stuttering is about three or four times more common in males than females.There is no reliable research backed cure that works consistently over time and for all people who stutter.The National Stuttering association is committed to enhancing the lives of people who stutter, educating the public, assisting speech therapists, championing research, and to reducing the stigma of stuttering. And we're going to talk to them today on St. Louis in Tune.Welcome to St. Louis in Tune and thank you for joining us for fresh perspectives on issues and events with experts, community leaders and everyday people who make a difference in shaping our society and world. I'm Arnold Stricker along with co host Mark Langston. Yay. Greetings to you, Mark.

Mark00:01:04

Greetings to you, Arnold. Great to be with you today.

Arnold00:01:07

It's great to be with many people.

Mark00:01:09

I know. I think we're gonna have a great show.

Arnold00:01:11

It's gonna be a wonderful show. Something I think people need to be aware of.

Mark00:01:15

Yeah, I've been very aware. I have friends that stutter and.But I expect I'm gonna learn a lot about stuttering and I had no idea there were so many people in the United States alone that stutter. So I'm looking forward to hearing what's going on here.

Arnold00:01:30

Our guests will speak from personal and professional experience and it's really going to be a great panel that we have today here. Mark. Okay, we're glad that you've joined us today, folks. We want you to thank our sponsor, Better Rate Mortgage for their support of the show.You can listen to previous shows@stlintune.com please help us continue to grow by leaving a review on our website. Apple Podcast or. Or your preferred podcast platform.Our thought to ponder today is that no pessimist ever discovered the secret of the stars or sailed to an unchartered land or opened a new doorway for the human spirit.

Mark00:02:05

Okay.

Arnold00:02:06

Helen Keller.

Mark00:02:09

Wow. Okay.

Arnold00:02:10

Someone who we all. Maybe you don't know about Helen Keller, folks. If you don't, there's a great book to read on her.But someone who was blind, who was deaf, and who ended up becoming someone who was just miraculous in the things that she was able to do. Check that out. No pessimist ever discovered the secret of the stars or sailed to an unchartered land or opened a new doorway for the human spirit.We're going to open a new doorway for those who are stuttering in our country and even around the world. We have three guests in studio today. Christine Rose is a speech language pathologist and you will hear SLP maybe in the course of our conversation.That's a speech language pathologist. She works as a graduate clinical instructor at St. Louis University.She co leads a National Stuttering association caregiver virtual support group with Jamie Saunders. And Jamie Saunders is here. She is a licensed social worker and parent of a person who stutters. She was the NSA parent of the year.She initiated the driver's license alert, which we're going to talk about. Co leads a National Stuttering association caregiver virtual support group with Christine and Jamie Saunders-Anglin. And also we have Molly Porzel.Is that correct, Molly?

Molly00:03:31

Yep.

Arnold00:03:31

And Molly is the wife of a person who stutters and the mother of three children, two of whom stutter.She brings a unique perspective to the stuttering community and she works as a social emotional interventionist at an elementary school in the St. Louis metropolitan area and she leads the family chapter of the NSA. Welcome, ladies, to St. Louis in Tune.

Jamie00:03:52

Thank you for having me.

Christine00:03:53

Thank you.

Arnold00:03:54

I guess the very first question I have is I'm sure people have listened to people who have stuttered, and maybe they don't really realize that they've listened to people who have learned to deal with their stuttering. What exactly is stuttering? Some people will say it's a variety of couple things. Let's get some baseline information for listeners.

Christine00:04:17

Yeah. Do you want me to take what is stuttering?

Molly00:04:19

Yep.

Christine00:04:20

Stuttering. They're finding that stuttering is mostly genetic. Most stuttering is.Has a genetic basis, and there's lots of exciting research out there about the causes of stuttering. So there's a lot of really important information coming out.But at its core, stuttering is a disfluent speech pattern where sometimes you get blocks where the words just are blocked, either at the mouth or the larynx and sometimes even down in the lungs. You can get some tension down there where you get some blocks and you just literally cannot get the word out for a moment, up to a couple seconds.There's also repetitions where you ruh. Repeat the beginning of a word or there's prolongations where you might prolong the sound that you're trying to say.So at its core, stuttering, the definition is really just a disfluency in speech.And where the impact is, we look at functional impact, how that impacts the listener or the speaker, rather, and the listener, for that matter, but the speaker, their emotions that are tied to that moment of stuttering. So as a profession we've gone three, a whole circle around where when I first started it was about fixing the person who stuttered. It was fixing.And if you can imagine that you were genetically made to stutter and you have the neurology of a person who stutters, I as a speech therapist and other speech therapists were asking people to do the impossible. And so we weren't getting any progress. They, the person who stutters was frustrated. Stuttering is very, it's variable.There can be weeks where you don't stutter, there can be hours where you don't stutter. And then it's. It happens. It happens for a variety of reasons.And that's one of the most unsettling parts of having a communication style like this is the variability. So our profession was taking data on a communication difference that is variable. So our data wasn't accurate.We were trying to fix people who aren't really broken. It's just the communication difference, verbal diversity. So we've done a 360.We're still trying to get the word out to most SLPs that we are not here to fix. We're here to support the person's communication and allow them to communicate with as much ease as possible.Looking at that adverse impact, what is it? The first time I stuttered, how did my parents react? The second time I stuttered, did someone react a different way?And then trying to keep those younger generation, which is why I think our family's chapters and our parents chapters are so important is to let the parents of young people know that it is absolutely okay to stutter. A lot of times people, there are a large number of preschoolers who outgrow it.But for those who aren't going to outgrow it, setting that foundation that stuttering is okay and that we're listening but we can provide you some tools and strategies to help with that ease. But also just reiterating that to self advocate to the people that you're talking to.You might hear me stutter and it's okay, just give me an extra time or two.

Arnold00:07:33

And you mentioned that this is a, it's really a physiological kind of thing.

Mark00:07:37

I was not aware of that.

Arnold00:07:38

Yeah. So it's.

Mark00:07:39

I don't know what I thought it was. I don't know if I ever gave it much thought, but I really didn't. But learning that it's a physiological kind.

Arnold00:07:48

Of thing and a genetic factor too in this. Yeah, we're going to get into that with our Guests here. Yeah.So the breathing, is that more of a neurological kind of thing where there's this disconnect between breathing and the speech and the mind initiating all of this stuff?

Christine00:08:05

Yeah, it can be that they're finding more and more genes all the time. They did a very fascinating. Dennis. Dr. Dennis Rena did a fascinating study where he took.He isolated some genes and they inserted those genes into mice and these little. You think, how could mice tell us anything about stuttering?But they had these little mice have these little pup isolation calls, and they were able to mimic what it is, what, what it like the pattern of a stutter and to figure out which genes are involved. So from that is sprung a lot of research into the neurological differences. And those differences are in different cells.There's a cell called the astrocytes.So when I'm working with kids, and astro means star, so when I'm working with young people or even adults, I'm like, let's talk about the stars in your brain and how those might be unique to you as a communication person. And that just leads down the road of so many fun and exciting adventures.Talking about, like, we were just talking about Darth Vader, the person who played Darth Vader as a person who stutters. So we talk about. He was in the stars in Star Wars. And so those neurological differences do impact the motor planning for speech. So it's.They talk about demands and capacities. So people who stutter might have a different capacity when the language demand is higher.So when children are learning to talk, we think about that age explosion when they're like two to six, when they're learning from one word to two words to big sentences, and watching the social communication and learning all these words.And that's when we see stuttering start for most people, because when they're saying like one word at a time, two word at a time, three word at a time, the motor planning is coming pretty naturally.But when a person who stutters, whose neurology and genetics are there to my predict that they're going to be a person who stutters when they start putting all of those pieces together, it's the motor planning and the action of doing all of that to kind of like a.

Arnold00:10:12

That misses like the spark plugs are missing a little bit. So the. It's just not flowing.

Molly00:10:17

Yeah, yeah.

Christine00:10:17

The demand overloads the capacity. Fluent speed. Yeah.

Mark00:10:21

I have so many questions.

Arnold00:10:23

Well, fire away with I don't know.

Mark00:10:25

Mel Tillis is back. In my years of country radio, I got to know Mel Tillis real well.

Christine00:10:31

Wow.

Mark00:10:32

And he really stutters.

Christine00:10:35

He's a very good stutterer.

Mark00:10:36

I know. Really, you sit down with Mel and try to talk, and it's. It's a struggle, I think, for Mel sometimes, But he sings perfect.And it just always boggled my mind how he. He's a really pet stutterer. I don't know how else to describe it, but he certainly sings really well. Or dead. I don't think he's singing much anymore.

Arnold00:10:56

I have a semi answer as a. An amateur slp, okay. Is that music is in a different portion of the brain.And so thus, it's not going through that section that speech is going through. It's going through a different portion of the brain. That's why singing.

Mark00:11:13

Okay.

Arnold00:11:14

He could sing without stuttering.

Christine00:11:16

Yeah, go. You got it. You got it.

Mark00:11:18

Wow.

Christine00:11:19

Different parts of the brain.

Arnold00:11:19

As a former musician, I could say yes.

Mark00:11:21

So you're leaving us here in radio and going with them, work with them for a while.

Arnold00:11:26

But that's a great point, though, Mark.

Mark00:11:28

I know. And if. I guess if you knew Mel Tillis, like I've had an opportunity to know, you'd say, wow, he is.And I'm not trying to say anything about Mel other than he really struggles talking, carrying on a conversation. It's really a struggle with Mel.

Arnold00:11:42

I think that shows the variety of the depth of this particular issue. Some people, it's just a minor kind of thing.Some people, it's a major kind of deal, but it impacts them emotionally and dealing in social situations. We're going to talk about that in a second.But I wanted to go to Jamie and ask you, how did you get involved working in this virtual support group with Christine? How did you get involved with the national group?

Jamie00:12:08

I met Christine through City Garden, Montessori. My daughter was attending school there. And during the pandemic, her stuttering increased. And so I reached out.The school had just transitioned into a different speech program. And I said this zoom speech therapy is not working. We need to find another way.Her IEP says we have to provide speech therapy to her in an environment that best fits the child in the situation. So Chris came to the house, sat outside.

Arnold00:12:46

Wow.

Jamie00:12:46

During the pandemic. And got me and my daughter through Covid. And I learned so much. My daughter had been diagnosed, probably was first grade.And of course, the wonderful SLP at the school said, it's developmental, it will go away. She's 10 and still studying.

Arnold00:13:07

Wow.

Jamie00:13:07

It did not go away. So Chris gave me an education.Like, she's doing here today about what I could do to help Octavia become not less not fluent, but accept who she is and be confident in her stutter.

Arnold00:13:24

Stuttering, being confident in yourself is a huge thing.And when you have those kind of impediments, whether it's a physical impediment or mental or speech impediment or something that just impacts you completely.

Jamie00:13:37

So to answer your question, how I got here, yeah, I was blown away. I was like, there has to be other parents out here dealing with the same problem. I. I really needed the support.It was about me finding my people and so we could sit down and talk about our children who have this unique gift. So I searched just like you did my research, and I found the National Stuttering association.And I did the emails, made the calls, and I said, I see on your website that you have groups that you start locally. So there was an adult chapter here. So I called the adult chapter leader and I said, do you have anything for parents?She said, no, we don't have anything for parents. So I said, okay, let's go.

Arnold00:14:26

There you are.

Jamie00:14:27

So I said, chris, I'm going to reach out to the National Stuttering association and start this virtual group. And it went on from there.

Arnold00:14:37

That's great. That's great. And you went on to be the National Stuttering association parent of the year, right?

Jamie00:14:44

Yes, they gave me an award. I was.

Arnold00:14:46

So the fact that you initiated to get that going where there wasn't a group that's worthy of getting that honor.

Jamie00:14:56

Thank you. Thank you. But I do it because, number one, I love my daughter, and number two, I'm a social worker and my career, and helping people is what I do.

Arnold00:15:04

That's great. That's great.Molly, you probably deal with kids where you're working, and part of that we've touched a little bit on is the social emotional factor that as I was watching a video that they have on the website, folks, and by the website, the website is W e S T u t t e r.org we stutter.org and that video was. I was blown away that people, when they were able to get around other folks who had the same issue, they were like, it's, I'm okay.There's nothing wrong with me. How do you deal with kids who are just coming in and struggling with all these things?

Molly00:15:45

I take a lot of my professional work and I apply that to the NSA as one naturally does. And so I actually ran a session at this past conference this summer, and it was entirely focused on, like, self Advocacy.So where Chris talked about that feeling of your voice matters and you can stand up for yourself because I think a lot of the emotional struggle comes from what's happening underneath. It's that feeling of, I want to say this, but nobody's going to listen. I want to say this, but I'm going to be interrupted.And so to avoid all of those negative feelings that are going to come from being overlooked and interrupted, I'm just not going to say anything at all. And then I'm going to feel bad because I didn't say what I wanted to say.So it's really, I think that piece of self advocacy is so important of people are going to listen and if they're not, you can make them listen. Like you can say, what I have to say is important. And having two little kids that stutter, little relatively, my kiddos that stutter are 5 and 7.And so like for my 5 year old, when he first started working on stuff, it was literally, put your hand up. If you're talking and someone starts to interrupt you stop. I'm not done with what I'm saying.

Christine00:16:55

You're.

Molly00:16:56

You have to wait and listen. Just because it's going to take me longer doesn't mean it's not important.

Arnold00:17:01

And if I may delve a little bit more into that with your husband also, how is he dealing or how did he deal as he was growing up? Because this is just a recent phenomena. So he grew up in what I would call the old school philosophy.

Molly00:17:16

So that's a little bit of a story. And that, I think, is how we got involved in the nsa. My husband and I are high school sweethearts. I've known him since I was a teenager.I didn't know that he stuttered until probably a good two years into our relationship. Because how stuttering was approached when he was a child was, we're going to fix it. And the goal is to not stutter.And he learned how to present to the public as a person that does not stutter. Now, internally, he was still a person that stutters. He just learned, we describe it, or he describes it really as like a teleprompter.So he's got this little script going and he can mark, oh, that's a word I'm going to stutter on. I'm going to swap it for a different word if I need to fill up my car. Oh, I'm going to stutter saying that I have to put gas in the car.I'm going to say that I'm putting fuel in my car and doing those word swaps. And he became so proficient at it that for many people, they still to this day, many people who know him very well don't know that he stutters.

Mark00:18:11

Wow.

Molly00:18:11

And in the community, we call that covert stuttering. So I adapted to that. I followed his lead. That was how he preferred to do things. And then we had a daughter who started stuttering.And I was like, whoa, I think maybe we've been doing this wrong the whole time. Because I didn't. That felt really icky to me.Like, that, okay, we're going to teach her that she has to swap her words and she has to be different, and she has to go through all this, a lot of mental effort, really exhausting mental effort to please other people to her own detriment. And I was like, I don't want to do that. And so I asked him if he would be okay with us taking a different approach to stuttering.We didn't have to change his approach, but could we change it for her? And he said, yeah.I searched on Instagram, as my generation does, I found some really cool accounts that helped me learn that more about stuttering acceptance led on this trail to National Stuttering Association.And for our family, this happened at the perfect time that I discovered the National Stuttering Association a few months before their national conference was happening in St. Louis.

Arnold00:19:18

Wow.

Molly00:19:19

And so, by fate, I was like, mitchell, I really. I want to take Cora. I want to go. He said, you can take her, and I will not be going. I was like, okay.So I took her to the first night, and she lit up.

Christine00:19:32

She.

Molly00:19:33

Every person that walked on the stage, she goes, mom, they stutter. Mom, that person stutters.

Arnold00:19:37

She's with her, keeps.

Molly00:19:37

Mom, that person stutters. And I was like, the next few days are going to blow your mind.And so after that first night, I went home and I said, mitchell, I think it would be so valuable for you to go. I've never been surrounded by so many people who stutter. And I was like, I think it would be valuable if you don't want to go.As a person who stutters, could you just go? As a parent, could you go to learn things, to help your kid? And framing it like that, he was like, okay. And he went.And he felt really uncomfortable with it. He didn't have where Cora had that feeling of, these are my people. He was like, this is what I've avoided my whole life.These people are doing out in the open. What I internalized as something shameful and bad and so it was really uncomfortable.But even after one day, he was like, I think I'm gonna go back tomorrow. And so he did. And over the process of that conference and the next conference, he's. He likes to say he's still working on it.He's not fully at the point where he accepts stuttering, but he would have been here today if he could. But he's in the middle of leading a whole training session for all of the new employees nationwide that just came to St. Louis.

Mark00:20:42

That's crazy.

Jamie00:20:42

That's great.

Molly00:20:43

So when we talk about, like, how stuttering doesn't have to limit you, it's not. He's there, he's presenting, he's talking.And he's reached the point where at this presentation, it's very likely that he's going to disclose and say, hey, nice to meet everyone. I stutter. You might have to be patient for some of this presentation. And that's a huge step for him. That just naturally came out of.I wanted that feeling of, I want to be better for my kids than I was for myself. But parents do.

Arnold00:21:06

You know, Mark, this reminds me of the deaf community, where one group was like, you got to read lips. The other group was like, signing. And it's like they were at each other like this. And it's. No, you do both. Okay, what's the deal?We don't have to go down one particular road, right?

Mark00:21:23

Correct this.

Arnold00:21:24

Arnold Strick with Mark Langston of St. Louis in Tune. We're talking to Christine Rose, Molly Porcel, and Jamie Saunders Anglin about stuttering.The website again, folks, is we stutter.org and that's s t u t t e r.org we stutter.org One of the things, Jamie, that I think really is another feather in your cap for being psa. Not psa, but the Gosh, I got to get my acronyms correct. Or the NSA parent of the year.But it should could be the NSA Legislator of the year is you did this medical alert kind of thing and talk about that. Because if you're stopped by law enforcement and you stutter, holy smokes, it's bad enough. So how did this come about and what's the result?

Jamie00:22:18

It came about when my daughter was 14. For those of you who are familiar with stuttering, saying your name and your birthday can be a struggle. So we went to the dmv.I was thinking this is another tool that will help her if I get her a state ID So if she gets a block in the middle of sharing her name and birthday that she can hand them the state id.So we went through the paperwork, did the process, and I said to the lady behind the counter, can you please put a notification that she is a person who stutters? So she served. She got quiet. She was like. She started looking. She had this. And then she said, we don't have anything for that.I was like, oh, baby, I'll be back, you little girl. I said, I will be back before her 16th birthday. You will have one for my daughter.Because, as you mentioned, law enforcement, driving while black is a reality.

Arnold00:23:20

Correct.

Jamie00:23:21

So driving while black and stuttering. I didn't want to have to get my daughter out of a compromising situation.I want law enforcement to be able to recognize that they're about to encounter a person that may look away when she speaks, that may have blocks, so you don't mistakenly think she's drunk, mistakenly think she's being disrespectful, Being disrespectful by looking away. But you have already knowing, walking to the car, that you're encountering somebody with a verbal diversity.

Arnold00:23:56

So what does it look like on the license? What's the. What does it say?

Jamie00:24:01

I think it's a red cross with a sex.

Christine00:24:04

Little alert, a little medical insignia, and it has the. The acronym of speech impair. And that was hard for both Jamie and I to swallow because.And I'm sure for Molly, too, and because we don't view stuttering as an impairment, but as a verbal diversity. And that's part of the nsa, that is okay to stutter, but for the general public. But for the general public and for the betterment of this.This medical alert, that's what would fit on a driver's license. So it's a little red insignia, and it has the tag of speech impair on it. Do you want to talk more about that?

Arnold00:24:40

So what'd you have to do to get that done? Did you have to go to Jeff City, or do you have to lobby your state representative or senator?

Jamie00:24:47

That was spring break when I went to the DMV when she was 14. So April 2024, I got on my computer and I sent out three emails, and I got a response. I said, chris, I'm doing this. We got to get this done.Before she turned 16, the Missouri association.

Christine00:25:06

For Speech and Speech Language Hearing Association.

Jamie00:25:10

It's too many letters.

Christine00:25:12

Misha.

Arnold00:25:12

The Ms.

Christine00:25:14

Speech Language Hearing Association.

Jamie00:25:16

Yes. It got to their president, CEO, president, executive director. And she grabbed the ball, and she was like, I never thought of it. Let's get this Going.And she said it may not happen before her 16th birthday, but we're going to do our best. Eight days after her 16th birthday.

Mark00:25:35

Oh, my.

Jamie00:25:36

It went into effect. You talk about somebody hooping and hollering. I ran downstairs. I was like, go get your license. I can't wait.

Arnold00:25:52

Those are some things that the legislature should be doing.

Mark00:25:56

Yeah.

Arnold00:25:56

And it's great that an organization was able to proactively because they probably have tentacles into the legislative process, lobbyists and people like that, and have the ear of individuals like that in Jeff City. But kudos to our legislature for getting it done.

Jamie00:26:13

Dmv. Yes. It didn't have to go through legislation. That was the first thing we did. Yeah.

Mark00:26:19

That's one better.

Arnold00:26:20

Yeah. Okay. I take back what I said then.

Jamie00:26:24

I'm in Jefferson City all the time. There are great people there. So what happened was they were. The DMV already has a list of disabilities, so it was added to that list.

Arnold00:26:37

Gotcha.

Jamie00:26:38

That kind of made the process less tedious. I didn't have to go through a vault. It has to be. The education part has to happen now.

Mark00:26:46

Right.

Jamie00:26:47

So we already have it established. We just need to go out and educate those who.

Mark00:26:53

I'm just thinking how many people know that they should even say that when they're at the dmv?

Christine00:26:57

To get very many. That's why I know we're trying to get the word out.

Arnold00:27:02

Maybe we could do some PSAs for them.

Mark00:27:03

I think that'd be great.

Arnold00:27:05

You guys stick around after the show.

Mark00:27:07

Well, public service announcements.

Christine00:27:09

Yeah. So the process went. It took a long time.But unlike the state of Illinois and state of Texas, who had laws that were passed, when we worked with Misha and their lobbyist and their legislative person, they said, we can really pivot and just go through the DMV and it's going to be much more streamlined. And it doesn't. The process now is. There is a spot on the website for a medical alert. You have to.You contact your physician and they would fill out a form, and then that form would. You would bring that with you to the dmv, and then that would allow for you to have that insignia.

Molly00:27:46

And I know we're here to talk.

Christine00:27:47

About stuttering, but the cool thing about this speech impairment is it doesn't necessarily mean just people who stutter to benefit from this. It can mean people who've had a stroke and might have a difficult time with getting their words out.It can be people with a developmental speech delay who have still some difficulty communicating with apraxia.Speech, where the motor pattern of getting out that speech, especially in a time of heightened awareness, when you're maybe in an accident and you're dealing with a first responder, your speech is already going to be a little bit jumpy.It's really going to be a benefit to not just the stuttering community, but to adults who've had strokes or people with Parkinson's who might have a little bit of a shaky sound to their voice, people with some vocal fold dysfunction that might sound a little hoarse. So it, it runs the gamut, which is what I think is really the most impact about this is it doesn't just pigeonhole into stuttering.While it was certainly stuttering that was created, Jane, you really started this for stuttering. But your work with the elderly in St. Louis, really, you felt very passionate about also including all people who communicate differently.

Arnold00:28:55

That makes sense. Yeah, that makes perfect sense.

Mark00:28:58

Wonderful.

Arnold00:28:59

We're going to take a brief break. We'll be right back for our next segment of the show.You're listening to St. Louis in tune with Arnold Stricker and Mark Langston on the US Radio Network. As strange as it may sound, at Better Rate mortgage We love talking to people about mortgages. Everyone in St. Louis promises a better mortgage rate.But what you really need to turn that perfect house into your dream home is a better mortgage. At better rate mortgage, we open the door to so much more. So where are you in the home buying process?Researching, maybe wondering how much you can afford? House hunting? Get a pre approval from Better Rate Mortgage Ready to buy. Our team is ready to make your mortgage process fast and easy.Whether you're purchasing your first home home or taking cash out to make your dream home even dreamier, our door is open. Come on in and get started. Today we'll show you how.Call Sean directly at 314-375-3293 or online@betterratemortgage.com Remember, at Better Rate Mortgage a better rate is just the beginning. Betterratemortgage.com and MLS Hydro 40135 and equal housing lender the United States has a strong tradition of welcoming newcomers and refugees.The welcome Corps is a new service opportunity for Americans inspired to welcome those seeking freedom and safety and in turn help strengthen their own communities. Welcome Corps is a public private partnership that is inspired by what Americans represent to so many around the world. A beacon of hope and refuge.All it takes is a helping hand. Are you ready to learn more? Contact the International Institute of St. Louis at infoistl.org or call 314-773-909.That's info.org or call 314-773/9090.

NSA PSA00:31:00

The NSA has taught me it's okay to stutter.

NSA PSA00:31:04

I began stuttering around the age of 4 years old and have discovered this community in the past six years. And I'm absolutely in love with all the aspects of it.

NSA PSA00:31:15

They are incredibly accepting and welcoming. It's more like a gathering, a homecoming.

NSA PSA00:31:21

This is our fourth conference, and as the parent of a child who stutters, this is really the highlight of the year for him. I hear from a lot of people and especially from my child, it's the one time of the year where everyone sounds like them.

NSA PSA00:31:36

It was the very first time that.

NSA PSA00:31:39

Like, I went to a hotel and.

NSA PSA00:31:41

Everyone was stuttering and they were like, stuttering loud.

NSA PSA00:31:44

And I'm like, oh, my God.

NSA PSA00:31:48

At times in our daily life, we.

NSA PSA00:31:50

Have to continuously fight to be heard.

NSA PSA00:31:54

Fight to have, like, our opinions matter.

NSA PSA00:31:56

I was just always trying to. To hide my stutter. I did absolutely anything possible to not stutter. Nobody in my life ever told me it's okay to stutter.It was always making fun of a stutter or talk slower, go to speech therapy so that you don't stutter.

NSA PSA00:32:13

I would shrink into myself, doing everything.

NSA PSA00:32:16

I could to take up as little.

NSA PSA00:32:19

Space as possible physically, emotionally, and verbally.

NSA PSA00:32:25

I wanted to be invisible.

NSA PSA00:32:27

I met somebody who stuttered for the first time when I was 16 years old. But that was done from a speech therapy standpoint, and the emphasis was on how fluent can I speak.I found out about the National Stuttering association, and this has become my second fifth family. And it's a place where I feel I can be my friend, self.

NSA PSA00:33:00

I first found out about the NSA after I hit a pretty hard rock bottom, and I was just googling, why can't I say my name? I came here and I started walking to the workshops, and I felt myself start to almost cry because I was just so nervous.And I told myself, I was like, no, I'm going to stay.

NSA PSA00:33:17

For many people, it could be their first time finding another person who stutters, learning more about themselves and accepting that they're a person who stutters too. And that's a very scary process, a very scary journey to go through. And NSA provides this nice base and support that is run by the people itself.And that's just what the most beautiful and powerful thing of it is. Connecting with the stuttering community has been one of the most important parts of my own journey as a person who stutters.When I'm able to connect again with the community, hear other people who stutter and relate to each other, that does wonders for my own progress and my own journey as a person who stutters and my own self acceptance.

NSA PSA00:33:59

Seeing my stutter in a different way, something I never heard much as in the last 60 plus years, that you are strong, you are valuable, you are beautiful, you are interesting. I want to hear what you have.

NSA PSA00:34:14

To say, which is welcome. After 60 years of feeling like I was walking alone through this journey and.

NSA PSA00:34:24

Really realizing I'm not, it is so, so essential to realize that you are not alone. Having young kids know they aren't alone from the beginning is crucial to their successful development overall.

NSA PSA00:34:46

Being at the conference reminded me that I am enough. It reminded me that yes, my stutter is a part of who I am, but thank you. The Just for Girls workshop, it was led by sisters who stutter.

NSA PSA00:35:00

And I think what the general theme ended up being was just about confidence, being a girl, a teen girl, especially in society like today, where perfection is.

NSA PSA00:35:09

Expected by other people.

NSA PSA00:35:10

And so I do think that a.

NSA PSA00:35:11

Lot of the teens come to the.

NSA PSA00:35:13

Conference to find that sisterhood or brotherhood.

NSA PSA00:35:15

Just kids their own age that understand.

NSA PSA00:35:18

What they're going through.

NSA PSA00:35:19

One of the biggest things is just like hearing other people who stutter, that just like dissolves the stigma around it.

NSA PSA00:35:26

The NSA is for anyone from a.

NSA PSA00:35:29

Kid to a seasoned voice, to an SLP to an ally, a parent. The NSA welcomes everyone. I first came to an NSA conference in 2015.

NSA PSA00:35:42

I was a brand new SLP.

NSA PSA00:35:44

It really changed my frame of mind.

NSA PSA00:35:47

In terms of how to work with people who stutter. This is the most friendly conference I've ever been to.Everyone here is so friendly and both the people who stutter here, the SLPs that are here, everybody who's here, it's just been this really warm community and I just, I feel a part of.

NSA PSA00:36:03

It and this is just my first time.

NSA PSA00:36:05

So I would say just do it. For sure you'll love it. After I leave this conference, I know that I will have more confidence just after one day.It was really scary coming here for the first time, but I'm so happy that I was able to come, come because it has truly been such a life changing experience and it's, I'm, it's. I feel so blessed and so grateful.

NSA PSA00:36:24

To have so many like amazing people around me.

Arnold00:36:30

We were listening to a recording of the National Stuttering association conference. Individuals who attended that and the National Stuttering Association.The NSA is the largest nonprofit organization in the world dedicated to bringing hope and empowerment to children and adults who stutter, their families and professionals through support, education, advocacy and research. We've been talking in studio to Christine Rose, Molly Porzel, and Jamie Saunders-Anglin about stuttering.And there are some local support groups that the NSA has, local chapter groups, and I'm thinking for parents and for kids and maybe even educators. Let's talk a little bit about that so our listeners know that they can check this out. Matter of fact, westudter.org is the website, folks.

Molly00:37:19

Yep. So in St. Louis, we are lucky that we have both an adult chapter and a family chapter. I run the family chapter, so I know more from that side.The adult chapter is also great. But working with kids, having kids who stutter, doing the family side was really important to me.And the video that we saw was from the national conference where everyone gets together, you're surrounded by people who stutter. And I think that my family attended that and it was like, oh, we need this in our community.Like, this can't be a once a year thing that, oh, we see these people and then we shift off to all of our different spots around the country. We need it. There's people in St. Louis who stutter, and we need to find those people. And it started as we had a kids chapter and a teen chapter.And more recently, we decided those two don't have to be separate. Like, the kids learn so much from the teens. The teens gained so much from interacting with the kids. And I feel like I'm backtracking a little bit.But I also want to say that this chapter is designed for kids who stutter, teens who stutter, their families. But it's welcoming to everybody.It is welcoming to allies, it's welcoming to people who want to learn more, to educators, to speech language pathologists. It's not a closed off community. That's if you don't stutter, you're not welcome. Like, we want people to know about stuttering.It's beneficial for the kids and the parents to, to find that community. And we try to keep it really relaxed and mellow. It's not, you're not gonna come to this meeting and we're not gonna spew facts at you.It's really a chance for kids, teens, families to see each other and feel that feeling of if you stutter, you are not alone.

Arnold00:38:56

How often do they meet?

Molly00:38:57

So our family chapter meets monthly and we've started a new system where we rotate our meetings to Try and reach more people. I know that sometimes it's hard for our city folks to get out to the county. It's hard for county folks to come in.So we're on a RO schedule where we'll meet in. We'll meet at St. Louis University, and then we'll have a special event that might be somewhere.Our last one was a summer barbecue, and then we meet at Chicken and pickle in St. Charles. They really generously have donated space to us.

Mark00:39:28

Chicken and Pickle. That sounds good.

Christine00:39:30

Yeah.

Molly00:39:30

So once every three months, we meet up. And you can get food if you want.If not, there's games, there's pickleball, and it's just a chance to really build community, meet people and see yourself and your voice reflected in others.

Arnold00:39:43

How long are these meetings generally?

Molly00:39:45

They're about an hour and a half. They're scheduled.So if you check out our listing, if you look up westutter.org and you can find the St. Louis family chapter, we have it broken down so that it's easy to figure out which where we're at, which month. And our meetings run from 6:30pm to 8pm People are welcome to come and go anytime within that window that works for them.

Arnold00:40:06

And the kids in the parent meetings are the same time, same place, or are they different?

Molly00:40:11

Yeah. So our family chapter is kids and parents all together. That's all the same time and same place.The adult chapter, which is separate, always meets at slu and they also meet monthly.

Arnold00:40:24

Okay.

Molly00:40:24

Just for adults who stutter or supporters who want to attend those meetings.

Mark00:40:28

And you can go to westutter.org and there's a link on there. Is that what I'm understanding? Yeah.

Christine00:40:33

Under we stutter.org under events. That's where you can find a lot of the special events, because there are events there are on now in this day and age of zoom.There are also online opportunities for kids to gather virtually and teens together virtually. I saw that there's a group, Sisters who stutter, and it's teenage girls who stutter.There's work resources for interviewing, dating, stuttering while older.There's a whole bunch of different resources, but under that, westudter.org if you look for find the chapter, that's where you will find the information about.

Arnold00:41:07

Then they have a chapter locator map. I'm looking at that right now. There's one on Lindell Boulevard, 3750 Lindell Boulevard.

Christine00:41:13

That's the St. Louis adults chapter. And that's run by Chad Minisi. He's actually the chair of the board of the NSA. So we're lucky to have him right here in St. Louis.And we meet on St. Louis University's campus the fourth Monday of every month from 6:30 to 8:30. And we're always wanting more people. It's not that it's a small. It's about six people that come regularly.But we're always wanting to reach out to college students, adults of all ages, to come and find their community there. And again, kind of like what Molly said, it's a very low key.They gather and talk and chat about all the successes they have in life and any challenges that they might have faced because they stutter and kind of work together as a team. So it's a really. It's a great community.

Arnold00:42:02

And you've experienced these, I'm sure.

Jamie00:42:05

Yes, I've attended all of these. I especially like the one at Chicken and Pickle. That was a lot of fun.

Mark00:42:13

I didn't know it was pickleball. I get it now. I like pickles, so I thought it was pickle.

Jamie00:42:17

I think it's important for parents because I consider myself an ally of the stuttering community because we have to, in order for our kids to be successful with their stuttering and their acceptance, we have to be accepting. And that's the hard part. Because as a parent, we want to make our children's lives so much easier.And just with a driver's license, I can't change her stuttering. I can't fix it, or it doesn't need to be fixed. In my mind, she's fearfully and wonderfully made just the way she is.But I think for me, I had to accept that I have a child that has a stutter. And then I had to put a plan in place and meet people who were in the same space that I was.And we had to encourage each other that our kids are okay just the way they are.And we needed that environment because as Chris mentioned earlier, sometimes the speech pathology community gave out a little bit of the wrong information.

Arnold00:43:27

False hope.

Jamie00:43:28

False hope. I think as more of us realize as our kids get older. I've gone through preschool, my daughter's 16.I've gone through middle school, which was a horrible time for a child who started and she says high school is much easier.

Arnold00:43:43

Let me ask you this.As you were talking, I was thinking, how has the education community responded to the information that you've given them about your daughter or that she's given them?

Jamie00:43:55

One thing that has happened is that Octavia has learned to Construct a letter that she emails to all of her teachers saying, I'm a person who stutters. These are the things I need to be successful in the classroom. And my approach to my daughter stuttering is, this is your journey.I'm just your co pilot. Tell me what you need and I'll go out and get it for you. So we kind of work as a team and so if I don't know anything, I go, hey, Chris.This is bouncing around Octavia's head and she'll reach out to Chris and we'll come together and try to make it work for her. As far as education goes, most of the teachers have been really receptive, especially in high school. I get, oh my God, I got that email.Thank you so much. It takes a while for information from the special education department to trickle down to the teachers.So when you walk in the door and get an email from a student, right, telling you that this is what I need, they really appreciate it.

Arnold00:45:01

That's a big deal. Because even a lot of what I would call non stutterers have trouble with advocacy on their own.And that's something that's a learned skill, frankly, that you need to speak up for yourself.

Jamie00:45:11

That's true.

Christine00:45:14

On the very first sessions in therapy is working on that self advocacy, knowing what's happening in their own body when they stutter, knowing what their, how their body makes speech, what does the speech machine entail, and then being able to educate others about their speech and what they need. And looking ahead, October 22nd is international stuttering Awareness Day.And so a lot of SLPs out there and a lot of students in schools are busy preparing special activities for that day in school.I know at City Garden that Jamie mentioned that I also work at, we have a big day on International Stuttering Awareness Day and that can look at the people who stutter, giving classroom presentations to their peers.So breaking down that stigma of what it is to be a person who stuttered, even even at the kindergarten first grade level, we have first graders who are standing in front of the class talking about how they speak and how they speak differently and what they need their teachers and their listeners to do. And so I think that day is set aside to, for the world to know that it is a day to celebrate this verbal diversity.And going back to your point about educators, there's lots of resources on that NSA website specifically designed for educators and it's really solid research backed information.

Mark00:46:36

Did having President Biden, who is a stutterer, did that help with the awareness or the Stigma of it at all?

Christine00:46:44

Yes and no. Yes and no.

Mark00:46:46

Yeah.

Christine00:46:47

Molly was talking about a covert stutterer being someone who has to hide and pick their words.

Mark00:46:52

He seems to do that, and he.

Christine00:46:53

Does that very well.And I think a lot of the times when he was being made fun of in the media were times when he was using that moment to try to figure out what word to say so he wouldn't stutter on it. He has come out and really embraced his stuttering.He invited a young person who stuttered to talk at the Democratic National Convention and then co wrote a book with Braden about his stutter. And that's really powerful for kids to see.So, yeah, it both helped and perpetuated the idea that to be a successful speaker, you might need to pick your words wisely so you don't stutter on them, when in fact, you can be anything you want to be and stutter openly. And it's that hiding that tends to intensify the stuttering.So if we can keep kids, young kids, from trying to hide their stutter and be covert, that gets rid of some of that struggle, and then they can stutter openly. And that's what we want. We want to peel back the onion and let them stutter how they were organically made to do.

Arnold00:47:57

Kids can be really harsh and cruel, but kids can be very forgiving and loving too.And if presented with the information, I can see a first grader standing up in front of the class saying, hey, this is who I am and this is what I struggle with. And the rest of the kids in the class saying, yeah, we get that.And then defending that student when they are challenged or made fun of on the playground or something. So it's kudos to you guys.

Mark00:48:27

I've never had it in my psyche to make fun of people on any of these, but yeah, it's just hurts me to know that people would make fun of someone like that. And it's just. It's uncalled for, not needed.

Arnold00:48:39

So I want to give the Website Again, it's westutter.org westutter.org and you can also check out. That's the website for the National Stuttering Association. Check out, folks, the local chapters, very important. October 22nd.If you're listening and you have a child who stutters, or maybe you're a parent or you're an educator and you want to bring this information to your school, check out the website. It's very important. 79 million people stutter worldwide.

Mark00:49:09

Wow, that's a lot.

Arnold00:49:11

That's a Lot.

Mark00:49:12

Yeah, that's a lot of people.

Arnold00:49:13

I want to give you guys an open invitation.Anytime you want to come on and talk about any recent developments or anything like that, please feel free to contact me if you're going to be advocating more and getting more of that stuff done. Jamie, if you're working with kids and you're like, wow, this is really working.And Christine, any of the latest research, please feel free to contact us. And we'd love to have you guys on here to talk about that because this is. This has really been an informative show.

Mark00:49:39

Oh, yeah. I have a very important show, I think.

Arnold00:49:42

Thank you ladies for coming in.

Molly00:49:43

Thank you.

Christine00:49:44

Thank you so much for the opportunity. I really appreciate it.

Arnold00:49:46

You bet. You guys can participate in our couple other things we have here. We have a portion of the show called Mental Floss.

Christine00:49:54

Okay.

Arnold00:49:54

Ben Franklin's formal education ended at 10 years old. Mark.

Mark00:49:58

What?

Arnold00:50:00

See, doesn't give many of us hope for our current generation.

Mark00:50:06

True. I know it.

Arnold00:50:07

Newborn babies have nearly 100 more bones than full grown adults.

Mark00:50:14

Knew that. I never knew that.

Arnold00:50:15

I never knew that either.When a man allegedly found a dead mouse in his can of Mountain Dew, Pepsi had an expert claim in an affidavit that the drink was so acidic it would have dissolved the mouse after 30 days. I thought that was Coca Cola, not Mountain Dew. Make me reevaluate.

Mark00:50:35

Have you seen people that drink mountain their teeth? What happens to them? Never mind. Just kidding.

Arnold00:50:39

Okay, I'll skip that one. Hollywood starlet Hedy Lamar is often called the mother of WI fi.She helped invent a version of the frequency hopping system that led to the creation of gps, Bluetooth and the wireless Internet.

Mark00:50:53

Get out of here.

Christine00:50:54

That's cool.

Mark00:50:55

Wow.

Arnold00:50:56

Okay.

Mark00:50:56

You are a wealth of information.

Arnold00:50:58

I'm just reading off of the Internet.

Mark00:51:00

Okay.

Arnold00:51:01

Don't believe everything you hear, Mark. Okay. What days of the day do you have?

Mark00:51:05

I got a couple. Just a few. It is National Chewing Gum Day, y'.

Arnold00:51:10

All.

Mark00:51:10

Chew gum, anybody? I had to quit. I. My fillings would come out with a chewing bowl all the time. Did you ever do that? International Translation Day.I guess we're translating here.

Arnold00:51:22

Yes.

Mark00:51:22

National Puppy Mill Survivor Day. That's a nice one. Pet Tricks Day. You have pets? Do your pets do any tricks?

Arnold00:51:30

No, I'm. I just am glad that they follow directions sometimes.

Mark00:51:34

Okay. National Orange Shirt Day. Do you have an orange shirt?

Arnold00:51:37

I do not.

Mark00:51:38

I know I can't.

Arnold00:51:39

If you're in Tennessee, you will. Yeah, I guess Syracuse.

Mark00:51:43

I would never do it. I couldn't do it. I just can't do that. I don't have a whole lot of days. International podcast days today.

Arnold00:51:50

Oh, how about.

Mark00:51:51

Yeah, this is going to be a podcast. It'll be on the radio.

Arnold00:51:54

Stlmtune.com and it'll also be a podcast.

Mark00:51:57

On YouTube and Facebook and just I guess anywhere you want to. Where. What platforms can you find this on?

Arnold00:52:04

Every platform.

Mark00:52:06

Every platform. For instance, an example would be.

Arnold00:52:09

An example would be. Oh, gosh, you're asking me. And my brain's going, okay, you go to Amazon. We're on Amazon.

Mark00:52:15

Yeah, Apple.

Arnold00:52:17

Apple.

Mark00:52:17

Okay.

Arnold00:52:18

For sure. You go to. Let me pull up the website.

Mark00:52:20

Okay.

Arnold00:52:21

And I can tell you.

Mark00:52:22

And I'll tell you one last date after you get done and we'll wrap it up with that day. National Love. People day is today.

Arnold00:52:28

Love. That should be every day.

Mark00:52:31

I know we don't want to get too moony here, but yeah, could use a little bit more of that.

Arnold00:52:37

Okay, Apple Podcasts, Castro, Amazon Music, YouTube, Pandora, iHeartRadio, Radio Public Spotify, RSS Feed. You can get that Odyssey cast box, Deezer Player fm.

Mark00:52:47

Wow.

Arnold00:52:48

Castro, Castro.

Mark00:52:50

Not like the dictator Castro.

Arnold00:52:52

We're not from Cuba.

Mark00:52:53

Okay. I don't think I've ever heard it. That's okay. But national podcast Day, so cool. Go find this STL intune podcast.

Arnold00:53:01

That's right, Mark. I once saw a 3,000 year old oil stain.

Mark00:53:05

Huh?

Arnold00:53:06

It was from ancient Greece.

Mark00:53:09

My God, you guys. Our guests are leaving.

Arnold00:53:15

The wife said, if a tiger attacks your mother in law and your wife at the same time, who will you save? The husband said, of course, the tiger. Very few are left now. The husband is now in icu. What kind of. These are your kinds of jokes here, Mark.What kind of doctor is Dr. Pepper? A physician. What's the difference between Black Eyed Peas and chickpeas?

Mark00:53:42

I don't know.

Arnold00:53:43

Black Eyed Peas can sing us a song, chickpeas can hum us one.

Mark00:53:49

Very weird.

Arnold00:53:49

It's bad.

Mark00:53:50

Strange. I don't know why y' all should.

Arnold00:53:55

I love the phrase bear with me. Because it can either mean be patient or the zoo heist was a success. And when I eat a rack of ribs, I only eat the 2nd, 3rd, 5th, 7th and 11th ribs.

Mark00:54:12

Why is that?

Arnold00:54:12

I prefer prime ribs. There was once a king who was only 12 inches tall. He was a terrible king, but he made a great ruler.

Mark00:54:28

Oh, man. All right.

Arnold00:54:30

Oh, Arnold. And intelligence is like underwear. Great to have, but no need to show it off.

Mark00:54:39

It's got to be over. Have you run out yet?

Arnold00:54:42

No, I just got an emotional support animal. It's a pig. Not the whole pig, okay? It's bacon.

Mark00:54:51

Why are you laughing? Don't laugh. Don't encourage him.

Arnold00:54:56

And it is October soon. Tomorrow it will be October, which means that all the cobwebs and dust in my house will soon become Halloween decorations.

Mark00:55:04

I like that. That's good. Get the horse out of here. Okay.

Arnold00:55:09

And out of all of the martial arts, karaoke inflicts the most pain.

Mark00:55:14

No kidding. That's for sure.

Arnold00:55:19

That's all for this hour, folks. Thanks for listening.If you've enjoyed this episode, you can listen to additional shows@stlintune.com consider leaving a review on our website, Apple Podcasts, Podchaser, or your preferred podcast platform. Your feedback helps us reach more listeners and continue to grow.I want to thank Bob Berthicel for our theme music, our sponsor, Better Rate Mortgage. Our guests, Christine Rose, Molly Porzal and Jamie Saunders Anglin. And we want to thank our co host, Mark Langston.And folks, thank you for being a part of our community of curious minds. St. Louis in tune is a production of Motif Media Group and the US Radio Network.Remember to keep seeking, keep learning, walk worthy, and let your light shine. For St. Louis in tune, I'm Arnold Stricker.