Hey fixers. I'm Dr. Jeanette Benigas, one of the cofounders of fix SLP. Our platform exists to discuss the biggest challenges that are currently holding back the field of speech language pathology. We present the issues with facts and invite you to be a part of joining this movement to make things better one conversation at a time. So let's fix SLP
Hey, everybody, welcome back. It's Jeanette. I am co host free today I have on guest Jordan love van from fighting for my voice. But before we get to him, I'm going to read a review. And this one is oh, hey, this one's from singing dot SLP who was last week's guest. He said I Kevin was brought on the podcast this past week. And I can't say enough about Jeanette and the fix SLP foundation that's been established. From her a welcoming presence to the education even to the willingness to learn from others makes this show and platform one of my favorites. Honest, deep conversation stems from a true heart to get to know the individual and proposing ideas that shift the narrative to be a better speech community. I implore the fresh CF SLP, the newbie grad student, the tenured professor, the seasoned vet, SLP, and everyone in between to tune into the podcast, give a follow and donate to the cause that is not only making a difference, but as making history and bringing everyone along for the ride. Kudos, fix SLP please pause while I cry and pull out the tissues. Thank you, Kevin. Thank you singing SLP Hi, Jordan.
Hi, how are you?
We have been waiting for this moment for a while.
So I know life through throughout a lot of things that made...
Jordan just message and he's like, Hey, want to record? and I was like, Yes, I am not letting this moment pass me by. I was in my pajamas. We both brushed our teeth for this moment.
I know now I'm drinking soda. It's fine.
I might pause to go get wine. We'll see.
Yes, we can have a fun episode. I'll be drinking my Pepsi.
But the episodes are always fun. What are you talking about?
Yes, of course. But you know, an added layer.
You might be the first non SLP guest.
Oh, really?
We had an audiologist? I'm gonna say that in and offend someone. But I really think you might be the first How about non clinical, non clinical guests baby, which that's a big deal. I've been fan girling over you since the day we started the Facebook platform, which I made in line at Disney World in September of 2023. Because we created our we created our platform. We pre recorded some podcasts, I went on vacation, and we started going viral. And it was clear that we needed a Facebook platform. So I set it up and Facebook showed me your face and said it was it was like follow this account. And I was like well, why not? And here we are. I'm obsessed with your platform.
Oh, and I said things Facebook suggestions.
And I think in that time since September, it seems like your platform has gotten a lot of growth
A lot of growth, but then the past few months. Social Media for four years now.
I'm gonna credit that to us. We followed you and then you blew up.
Exactly as you guys really helped me out.
Yeah, because I actually thought you were a new account. Like I didn't realize you had been established. I thought you were getting started the same time I was. I was like, Oh, this is so great. We're growing together. And then I started paying more attention. I'm like, wait, I think he's been around for a while.
Yeah, for a few years. Now. I did change my user name on Instagram because not all of the accounts were under fighting for my voice. At one time. I was like, let's name everything fighting for my voice.
That's a platform that's your handle fighting for my voice. I'm sure there are a bunch of listeners who don't know who you are or what you do. So why don't you tell us a little bit about yourself?
Oh, hi, it's my name is Jordan li van it's, it's I run the social media platforms under fighting for my voice. And what fighting for my voices is that fighting for my voice is a page where I talked about my own personal life experiences growing up with childhood apraxia of speech. Multiple does say bilities. And fighting for my voice has a common theme that we all have to fight for our voice in some way, shape, or form. And I feel like there's a lot of ways where our voice can be either taken from us or a way where we might have to fight for our voice in some way, shape, or form. And that's really what fighting for my voice is for me and about my own self growth and self discovery along my own journey is I'm also the author of Jordans road and Jordans journeys, I have published four chill children's books, and they're all about my real life experiences. Also growing up with childhood apraxia of speech and really vital life lessons that I wish I would have learned when I was younger. But at the time of writing these books, I usually learn that life lesson during that time as an angel, and that's what kind of drives me to write books and to write about my life. I am also the president and founder of the A apraxia Foundation. We are a 501 C three nonprofit that helps individuals with childhood apraxia of speech and other related speech disorders, a Ford research evidence based services and munication di D vices and I founded the nonprofit it was in June of 2021. And we have been so fortunate to help a lot of families a forts of beach services as as well as communication devices because we believe that communication is a basic human right and that all people deserve equal access to Nina. Keisha because there's so many different things that might affect a person from getting the treatment that they need. So those are a few different different things that I do. And it's really nice to be on here. Thank you so much for having me.
I love your platform, because you are just unapologetically you. And I, I just I love that about what you're doing. You put yourself out there, you talk about your life, you talk about your communication struggles, you're in speech therapy, so you share that. So I just love it. I just think that's great. And I think we all need to be unapologetically who we are. And I also love that you're an advocate, you're not fixing SLP, but you are trying to make a situation better for a ton of people who struggle with communication. And very early on, you started sharing our content and saying, Hey, like our speech therapists are important. We need to be supporting them in this effort. And that meant the world to me. So thank you for just putting us out there because it's true. We need all the support we can get from the SLP platform.
Yeah, there's honestly a lot of things that people don't know that, that as hope he's really good there. And partially why SLPs are afraid to talk about this is because SLPs are afraid to lose their job because if you're going to have your live leave heard, literally threatened where you wouldn't be able to a afford housing and food and water. Of course, like you don't feel comfortable talking or talking about these different things. But I'm not employed by anybody. I am employed to myself, so I can talk about whatever I want. So that's why I talk about it because I can, but many people came many people can't say that if they're actually if they're actually employed by the public school system, that typically the case typically the case loads are looking at probably a B plus C. Students on the average case load our C, our circle base SLPs are really stressed, then they're really underpaid. And we really wonder why circle base SLPs within a few years, they go and they open a private practice. Well, you don't get treated like your garbage anymore. Like that's a really great feeling for any person in any sort of pro pro fashion and it's really, really, really sad about but once but once again SLPs are afraid to talk about these things. If we're going to support people who have served speech disorders, communication struggles, whatever that might be. It's not enough to only advocate for them, we have to add, okay for the Fildes, that helps support. Because what are you actually doing? If you don't do that? I don't know. That's just that one personally, personal life and personally opinion about it.
It's kind of an access to care issue too. If we have our best clinicians leaving the school system, sometimes that's the only speech therapy a kid who really needs therapy is going to get, and we want those great clinicians who love giving school based services to stay with the schools. You know, I was a school SLP for two years at it. I mean, I didn't like kids. Maybe that was the problem, but also as a new clinician. It was I was in the schools in year two, and I was in a charter school in year one. And it was a super great situation. I was half clinic, half in this charter school that was super supportive. It was not the typical situation. But in year two, and year three, I was fully employed by the county, and I was in special needs classrooms and giving speech therapy to kids in grades kindergarten through eighth across four schools in the district. And the second year, I think I started with 73 or 75 kids. And supposedly there's a caseload cap of 80 in Ohio, but I I hadn't even started looking at the new kindergarteners yet. I hadn't gotten any referrals. This was going into the school here. And I said to my supervisor, hey, what I'm starting at 75, what am I supposed to do? And she's like, you just do the best you can. That's what you do. She's like, you figure out how to see him. And that was the beginning of the end for me. And I guess it was already coming to an end. But yeah, I mean, that's the kind of support that we get is just figure it out. And I left, I'm really, really sorry to hear that definitely did not be days or that story is not unique. That's the thing, the story's not unique. And then the healthcare SLPs have the same type of problem, but it's productivity. You have to see so many patients in the hours that you're clocked in, and you have to be billing for so much time. And at like a 90 to 95% productivity rate that gives you anywhere from 24 to 48 minutes to go to the bathroom. Consult with doctors and nurses build do your paperwork, plan materials, what even is that? That's awful. It's it's a mess. It's not something fix SLP has taken on yet, but it might be coming. This one woman show might eventually take it. Let's talk about your books tell me everything we need to know.
So how at first began writing the children's books actually, it was in 2020 When we were all locked into our houses and we were all cooped up with our thoughts which was very, they're they're very fun, but it made me do a lot of self Gree flexion during that time about my own like personal journey and like what I personally had to learn and go through as a person to get to a place of self a acceptance and self love. So from that I had arrived in my first book was called the boy who couldn't speak yet. And the boy he couldn't serve make yet for me was the failings the the motions and words that the boy who couldn't speak yet all felt and wanted to say but wasn't able to as a child so that's why I wrote in the the book to express those different things. How I found a place of self love and self pay septons while being a child or being very heavily bullied due to my suspicious order might have gate might have gave me the impression that maybe I should feel otherwise about myself so that's how I first wrote in my first but and I published the books under this theory series Jordans World and Jordans World was always a very unique concept to me because as a child people would describe me as I was in my own like world in my own bubble and such but that was because I cannot physically new indicate with others. So most of the time Yes, I was in my actual brain if you will, and that's what Jordans were supposed to represent for me, is, you know, my brain not being able to speak as a child and there's a lot of common themes as you read through the books so like if you read through like the boy who proved them wrong, and the boy who spoke even when it's boy shit because as because as I kept on writing, like the titles just got longer and longer if I'm honest, I just kept on writing but you'll read a lot of themes that they like, and Jordans World like he wanted everybody to be a sceptic for who they are, versus the outside world. And many of the bugs there's things that the outside world might not have looked that way. So it was a very unique concept for me. So that's why I love Jordans World, I wrote three books on the trilogy. And it just made sense for me to leave those three, three books with him. Jordans World. So I had began writing bugs under the bug series Jordans Journeys, that is an X extension of Jordans World because I didn't want to take away from Jordans World and because those are about the years of my life growing up and being not and became so not being able to physically speak at all as a child, I was able to use like to grow now it's maybe like a few words here and there. But they were very in the system. And it takes you along the journey of age like five through eight. So it made sense sense to me to write Jordans Journeys to can continue talking about these different ex periences, But talking about Jordan kind of getting out of his own inner world and such and what did types of like social re relationships look like? Like relationships with family members, making friends and different things like that along my own journey. So that's my kind of caught on except for Jordans Journeys, as well. So I just got done writing my fifth book, I actually had to submit it to my editor at 5pm. So I'm excited. I haven't mentioned much about i because I'm honestly really scared, but I'm excited. I love the book I do so.
So are these self published? Or are they through a publisher?
These are, these are self published my, my self, it's I was really, to be honest, I was told with the first book, I was told that the first book would not sell. Because it was really met with like, this is a very niche topic. And it really is. But for me, that's the whole more reason to write the book. And it's very, very niche to some people, it's not going to be niche to the group of people that you are trying to really target and trying to get a lot of. So what was pretty funny about that is that actually with the first book, The Boy Couldn't Speak Yet on pre order alone. It sold around 2500 copies, and very, very roughly. So I actually took a screenshot of that. And I sent it to the person who told me that book would never sell. And I was like, just so you know, my book, I was really petty.
Um, that's the kind of spice I like, this is why we're friends.
It was really funny, though, to be honest, during that time, because I was like really crushed about it to be transparent with you. And I just was like, I was very, very great. Grateful that anybody wanted to order my book yet alone that many pre orders and such but it just made sense for me to keep on self publishing the books because there's a lot of things that people may have wanted to take away or edit from the books and just when you're writing about your real life experiences, like only you can report that and I just didn't want there to be any sort of like, filter on that part.
You did well. So where can people get them?
You can get them on Amazon. You can get them on Barnes and Noble, Target, and Walmart.
Well, what if I want them signed?
You ago to fightingformyvoice.com/shop
How about I just Venmo you and you give them to me when I bring you by?
Okay, well, that works out for me you can, then
we'll work this out privately after the episode. How do you make the most money, that's how I will pay.
So we talked about your book, before I move on, is there anything else you want to say about your books?
A lot of children don't get to see themselves within these types of books. And that's one of the main reasons that really drove me to write the books because when I was growing up, I would search for myself and like books or T V shows just like people who spoke some sort of like that you could tell that had a speech difference of some kind, and I was never able to personally find that, that that the realm of a, a apraxia, if you will, even if it wasn't named a apraxia. If I saw a person represented with a speech disorder, it would have made me feel somewhat seen or heard. But I didn't see that. And like any sort of books growing up, or like TV shows, or movies or anything like that. So it was so that was the more reason for me to write the book series. So I just loved that.
Are you familiar with Dolly Parton's Imagination Library?
Yes, I love Oh, my goodness, she
You need to get your book into into that. First of all, in Ohio, my book when my daughter was born, they only did it in certain counties. And we lived in a county that did it, they get a free book until they're five every month. And then during COVID, the Governor made sure that every child in the state got a free book, you have to sign them up for it. But it went to every county. So now every county in Ohio has it. And my son was already signed up to so my my son went through that. But not only do kids need to be able to see themselves in books, but also it's great exposure for kids who don't know what apraxia of speech is. And don't know that some kids are different. We're all different, right? We all have special things about us. We're all different, I think is great exposure for kids who don't know someone with apraxia of speech, like Sadie didn't know what that was when you gave her a shout out on your Instagram Live. And she thought it was the coolest thing ever. But it was also an opportunity to talk about first of all to explain one what an Instagram Live was because she didn't understand how you were talking to her like that. And it wasn't FaceTime and to what apraxia was. And so you know that it was just a cool opportunity. So getting your book widely distributed, like that would be so great for other kids who don't have the exposure.
Yeah. Yeah, it's I love that. And I also love your point and a addition to that about it's really good. It's really good for kids who do not have those troubles to learn from them. And yeah, that's really what my books are personally a bout are like life lessons that I learned and I do. And I DO RE flagged a lot on the books as well that like being kind to others that it's not about how we say the words about what we have to say that really. Basically kids need to learn how to be nice and how to in clewd others and everybody's different and that's okay. BINGO! Next topic. Wrap that right there.
I am bad with numbers. I don't know how closely you follow this podcast, but I am not a numbers girl. So I was sitting here trying to figure out what year you were born 97?
1997. Bingo. Bingo, bingo.
And so I was trying to think about that, because I was trying to think about what year you should have hit your expressive language, language milestone. So we're thinking like 99/2000 And what was going on in the apraxia of speech world at that time, because I am going to tell you what I learned in my undergraduate course. Oh, please. And it is right about that time. So if you if you should have been talking around the year 2000. I was in undergrad in the very early 90s, or just no, I'm not that old in the very early 2000s. And we had the best professor. When she was great, and she told us that apraxia of speech was largely not understood yet, and that it was the diagnosis that most people gave kids, when they didn't know what was wrong with them.
Oh, my goodness.
And that's what I learned about apraxia of speech right around the time, you should have started talking. And I expect you were pretty delayed. So I'm really curious to know what age you started speech therapy, and what the quality of those services were, and how it developed as the years went on, because certainly, we gained a much better understanding from the year 2000 To the year 2024.
Oh, wow. So I first began speech services at age five. And I actually began talking at age five. So I couldn't talk prior to age five, the very early years of my life were honestly, they were honestly like, based off of what I personally refer to as Sir, as survival. So I was born three months pre, pre mature, with posts to reel your Ripa valves. I was born with all of these rare things in quotations, because I don't think these things are as rare as what we make them out to be. And like true, honestly. But second, all of these things that are really hard to pro now it's not only for a person who has some basic practice yet, but they're just some difficult words. But I was born with that. And I was like, a very sick, baby, very sick kid. I've also kidney and a half. So they actually thought at one time, because I was born three months pre mature that somehow that would have some sort of in dacater on like later on within my life that it would take me more time to talk. So there was just like a lot of misconceptions. Of course, I think, once again, a very common theme. And I began speech services at age five, I got in speech services within the public school system. My first SLP did not know how to treat a apraxia. But she knew that I had apraxia, because she didn't know how to treat it. So she would actually lead me outside of her room. So she was like all of my classes where they were like, they were like trailers outside. So we weren't in the actual building, we were in the trailers. And there was like a really long built in deck that like you could go in between, like the different classes. And she and she just would leave me out side of there. And her reason for that is because she didn't know how to treat a apraxia. One, even if she didn't know how to treat it, you didn't, you don't leave a child outside of your classroom like that. Just that doesn't make sense. But I'm just saying what her reason was, as I age, though, she left the circle though, something that you would probably find in, in trespassing is that when she got caught, or that she, she actually came into the circle in the middle of the night, and took all of her files and including my file. And she left the school and nobody heard anything from her. So that was kind of the end of that era, I went into my first grade SLP services. And it was once again was not getting the services that I needed my first grade teacher so that she could an under down me the whole entire year. That's what she put on my report card or said to my mom either or was my mom told me. And then in my second grade year, that's kind of when things began to kind of change, my mom really started pushing more for the services, which she had been. But during this time, we also found out that my childhood apraxia of speech was also affecting my reading and my son battling as well. So I was going to go into my third grade year. And the core instruction would have changed from those being the things that you were learning to things that you need to know now in order to like learn further things. So that's when the services started to be like, bumped up more. And I began getting like five times a week of sessions for like 45 minute sessions. So it was a really big change and they really changed the approach that they were doing as well. So they said have wished to doing a motor planning approach, which we know for a apraxia is literally required. And then that's when I started to make like a lot of surf beach games. And then I went five times a week for 45 minute sessions, up until my sixth grade year. And I kind of then honestly just had like a breaking point with it, because I went for so much for many, many years. And I feel like I was honestly very overworked. And I was really, really stressed out. And I wasn't really, and it wasn't a good fit for me, like they said, Well, I was going to I was really, really bullied because of my a proxy via a month other things. So then I actually, once I was in my sixth grade year, like I showed up, re fused to go back because I couldn't handle it. And then I actually decided to go back when I was 20 years old, because I found that there were new life situations that nobody prepared me for. As a child, of course, like I have to go apply for jobs, I had to, you know, there were college classes I was taking, and I saw those things were really a factor. And I sought out help at a local college that had a grad program. And then I got into work with the grad students for around three years. And they were very eager to learn. So I had like a very positive experience with that those were absolutely great. And then I went for three years. And then I've been back to speech now for the past two months. And that was because I just got trained in Orton Gillingham. I have my A associates level now. But there were certain low names that I had really a hard time pro noticing. So I really needed help with trying to really master this bow name. So those are kind of what the speech services have been like so far, very roughly, within my life.
I mean, that kind of matches up with, you know, when you were five, that was probably the year I had that class where I learned like, we don't really know what it is. And I recognize I told you, I was in pediatrics, my first three years and I recognized man, this is really a lacking area in my education. And so the year that I left, or it might have been the year before I left to go into full time adults and get my PhD, I actually sought out continuing education with a at what was the time I don't know if it still is but a really well known apraxia of speech program that clinicians will use because I had a couple of kids on my caseload throughout the years who really had a tough time. And I felt like I was doing a disservice by taking them on. And I just knew it was an area where probably I could have been better educated, but also the research was coming along. And so I wanted to stay on top of it. And then I never got to use it because then I stopped working with kids and switch to adults and haven't really had much, you know, I have people with had strokes who have apraxia, but not with kids. So I think it's probably still an area that speech pathologists could do better at Case in point, I often teach motor speech at universities, when I you know, because I'm an adult neuro professor. And motor speech includes apraxia and dysarthria. And it's very heavy in adult, but you still have to cover the pediatric side of that in those classes. And I always bring in guest speakers for apraxia of speech because I know that my education is so poor, I've not treated it in children's since I got a good training. And that's been years. We're coming up on 15 plus years since I've had that training. So I've always brought in guest speakers for that just so my students can get a little bit of a better education than what I can provide. But not every professor does that they just...
Yeah. And that's like really, and what I'm really, really shocked at though that your pro fesser had said during your class, though, is that is that we know that people have it, but we don't know much about it. Yeah, because I've heard a lot that there's some row fasteners that will say that this is so rare that you will never see a case of this within your lifetime. So there's no concerns about trying to learn this. Or either there's some pro fessors and I was trying trying to have one of my SLP friends tell me the pro fessor's name because I because I was going to eee mail and it'd be like this is real, like I'm a person who has that tie. What's up like less fight? No, I'm just playing with a five person, I couldn't hurt a fly. But um, there's some pro fessors that will say like, like, this isn't real or we think it's just something else or Yeah, and that's absolutely not true. And also, I think that once a again, I feel like we've came a long way, in terms of like the apraxia of speech broad, but I do feel like there's a very large misunder so damning as well, that this is a common condition that gets better with quotations with an age or that people with childhood apraxia do not need like speech services. Like they're being lazy, they're being shy, they're being a boiler and such that we really see these kids become teens and adults who have childhood apraxia of speech. And people will go on to describe them as being as being like, very, very shy, or like not talking much when they're wanting to talk. But physically, they know it's difficult, of course, and we might see people with a proxy or how, you know, a lot of troubles making friends as I was, as I was a co author on a research day, this was in 2020. And when we have found that people with with childhood apraxia of speech, have more troubles, making friends, more troubles with social ree, ree relationships. And these were all things that I can personally say are very hard, very, very true. But you don't know how to tell a person when you're trying to talk with them that doesn't struggle with this, like, I like, I'm having trouble getting this word out, or I'm trying to, or I'm trying to tell you something, but like, my brain is just like not letting me say it. Like those are not things as with them, that's within the norm. So we say a lot of these teens and adults grow up and learn how to mask it. So a so a essentially what that will look like is they'll purposely a void words or phrases that they know that they would have trouble saying because you can just kind of fill it within your brain. For me, that's how I can feel it. I don't know how to describe it, but like prior, but like prior to me saying a saying a word I can feel like a certain amount of tension within my brain. So if I felt that tension, a essentially, what I used to do, as I used to a avoid saying that word or phrase, because I was trying to like, mask it to a certain point, you know, versus now like I'm willing to expand upon my speech. And if I do have speech difficulties, I actively work through them. But I had to learn that I wasn't supposed to outgrow a proxy that childhood apraxia is life long. And that it's okay to have a speech different. So there's nothing wrong with that. But I feel like we're we're really lacking is that we're not teaching a lot about disability a substance or does say ability pride. And I feel like we would have such greater outcomes if we taught kids that like to be who they are, and that there's nothing wrong with you. And to teach them the purpose of services. So the purpose of services is not to fix you because you're not broken and you never been broken. This is a tool to to help you because we want to know what you'd have to say. Sorry, I could rant but it gets on my nerves. Ah!
I love that though, that we're we're not going to fix you because you're not broken. Oh my gosh, we can fix SLP we're not going to fix the kids. Man, I just get to upload all my, all of my complaints on you. I also find it just another problem that I've encountered as a professor in academia is I don't find that we should really be diagnosing or treating any condition if it's not in our scope of practice. And of course, everything is in our scope of practice. But if we don't have the specific training and tools to be making a diagnosis we really shouldn't be. And in the last I'd say year and a half I was working going in a university clinic where there was a kiddo who very clearly had apraxia of speech. And so we did, we did an evaluation, but I was the supervisor. These were first year grad students in their first clinic rotation. I'm an adult therapist, I've never diagnosed a childhood apraxia of speech. And it's been 15 years since I've been trained on it. I'm not about to rock a family's world and diagnose that today, we did in the eval. And then I gave them a referral, I said, you know, we can try to treat this. But if you really want answers, it's best that you go to someone who really knows about this. And here's some phone numbers of people, you can call and we can coordinate with them and have some continuity of care. But our clinic director did not like that I did that we should be a full service clinic where we don't have to send families to other places. Well, I'm sorry, but we don't have a person in this clinic who can do that. And I feel like it's our responsibility to be modeling that for our students. So they can see how to handle those situations to I didn't turn them away for from services, I told them what I thought was going on, I just said, I'm not comfortable giving you that diagnosis, because I'm not trained to do that. Full stop, like, here's some names, we'll still see you. But here are the people who really immerse themselves in this. And I Yeah, so what do you think about that
I really think that if you... based off of what I read, I would, I would personally find that if you're not like well versed in trading, hey apraxia, and you don't have the tools and the A sets that's in such making that re furl would be best practice because you wouldn't want to miss us or not a part really, you know, give the testing to the child and then the results, if you're not well versed on them, once again, the results could be so good and such and then we want to have like the most accurate picture, that's I would find that if you really do suspect, of course, childhood apraxia just really making it that strong re furl and just saying like, it's if your child does have apraxia, then the motor planning approach is going to be let's research evidence base. So I would just really encourage you to act upon this re URL. But it doesn't mean that the SLP at the end of the day has full control over that they can re try to reefer out. But you know, it is up to the parents. If they do reefer out. And then also we could go in the topic of if in surance. We'll cover that. But that's a whole different topic that I get heated about, but I do I would make the referral. I think you did what's best. Yeah. Yeah.
You're not improved?
Yeah, yeah. Yeah. It's really tricky. Because I was trying to think over it like within my brain, and I'd be like, is there anything but I don't think so. Because you wouldn't want to, you wouldn't want to try to use the tests thing, if you didn't know how to add manager at like that would sit down into reason for me.
But also, that's such a life changing diagnosis?
Absolutely.
Do you want an orthopedic doctor telling you that you have a heart condition that you have terminal cancer and you know, an organ? No, you want the specialist to tell you you have terminal cancer in whatever Oregon it is not the bone doctor. So why would I give someone a Life Changing diagnosis? That really does that change the approach that they're going to use and the amount of therapy that they're going to need and the amount of time they're going to spend getting that therapy? As a mother my world would be rocked Why am I gonna rock this family's world when I could be wrong?
Yeah, absolutely. I mean, like, it's, I mean, like, Absolutely, and I was gonna say as well that I feel like we put too much pressure or too much pressure on our speech language path. ologists and we x back down. Like, you guys have to learn a lot, a lot, a lot a lot. And there's only like so much that you'll be able to practice but I feel like people see SLPs that oh, you treat sa b She should be able to take on anything when start and the chemo doctors have searched and pro, you know, certains, some spa specialties. And I feel like that's how we need to start looking at the SLP field and just knowing that there might be certain SLPs that are more well versed in certain can ditions and there might be some that are another conditions and that's okay. And that's okay. It doesn't mean that a person who doesn't practice a practice is a bad SLP it just means that they are, they're not trained within that. So, one that is
We need SLPs need to be okay with that. And they need to get better at advocating for themselves when it comes to their caseload, because employers just expect you to know everything. And sometimes, you know, faking it until you make it isn't the way to go. Because you're messing with people's lives. Yeah, yeah. What else? 501C3?
501C3? Oh, yeah!
Tell me more about it.
Yeah, so I am founder and president of the A apraxia Foundation, hearing all voices where we help. And I visuals who have childhood apraxia of speech and other related speech disorders, be able to afford research evidence based services, then also an A C, D basis, as well. So I first founded the foundation, and it was June of 2021. But had really, in so what really, in inspired me during that time to find the a proxy Foundation, as I began talking about, you know, my lived experiences with childhood apraxia of speech, I began my advocacy for childhood apraxia of speech and other sorts of disabilities as well. And I heard from a lot of parents, a lot of parents would message me, and they would say, you know, Jordan, we think it's great, you talked about this, but like, what else can help our child, because we're not able to pay for it, this, our insurance either won't cover it, or our child is not old enough to go into circle. Yeah. And I would get different messages like that. And it honestly just broke my heart if I'm honest, because I know that, as we were talking about, like my speech therapy timeline, like there was a difference when I got to the research, evidence based services, and when I got to the aproach, that I had, needed, and I know from my own lived experience, that was very, very much the case. And it just honestly really broken my heart. And I was like, well, what could like we do for the family. So I personally began doing a lot of like a, I personally began doing a lot of a pill writing to in surance companies, but you will do that, like, all day long you cut. So that was taking away time from, you know, the child getting the services, and I really am a firm believer that that time does really, really matter. And we need to give the child access to meaning and occasion as soon as we possibly can, because every person needs access to a new indication. So I founded the apraxia phone station where basically how we help families is that we're able to to give out grants for speech services and also for AAC. So we've been able to give out grants for the past two years now and we've been able to grant a total of over $15,000 for speech therapy, and then also a total of 12 AAC D vices as well. So we are a volunteer board. All of our board members are in volunteer positions and the reason why that is is that we really want the funds should go to the family so we make it our mission for all the funds that we fund raised to be dis tributed back into the kg unity through our grant so I really really love the a proxy of town station. I really has a very it's a special place in my heart because I personally know what it's like. I personally know what it's like to be a child and not be able to say what you want to say. And how frustrating that and be and then also as a child that didn't have access to AAC because of all the misc. Sections of AAC is what also drives me to advocate for AAC. And for those misconceptions to also not be something that prevents a child or person being able to communicate
You're looking at an AAC professor here too
We can talk about AAC. I love it AAC
They... I know, you watch. So I don't know how familiar you are. But a big frustration of mine is that some of these companies require the CCC for people to order devices from their company. And I'm not going to call them out here, because some of them are willing to meet with me and a lot of has been going on in my life. So I've had to cancel some meetings. But it's so frustrating because that's an access issue. You've got highly qualified speech language pathologists who could be ordering devices, but now can't or want to let their CCC go and won't, because they know they won't be able to order those devices. So that's on my advocacy radar. I'll be picking that up. Soon, I put together some AAC warriors. I'm calling them to help me with this mission. Because I can't do all of this alone. And I need, I need some clinicians to pick up where I left off and take some of these meetings. But that's so frustrating to me that a proprietary product is required to order a piece of equipment that someone could really use and need.
Absolutely.
Yeah, I love AAC. As you're, as you're telling, talking about your 501C3, I've got, I've got philanthropy and me I like to raise the money. And so I'm sitting here thinking like, how cool would it be if that foundation just gave away the books to every kid with apraxia of speech, you need a book for a kid? Here it is off our stack. you need to raise some money too. So those books can be purchased, just to give away for free.
So I would love it, I would love that or it's I would love to be able to, it's I would love for like the apraxia found Dacian as well as I would love for it to grow and Brett to help as many families as we possibly can. Because at the end of the day, that's the whole mission.
I told a friend today that as part of fix SLP as I continue to grow this movement and this advocacy firm, and I'm thinking about all of the people that I'd eventually like to bring on to help me a philanthropy like a director of philanthropy is on my list of things even if it was a part time paid position to be doing good things like that raising some money for your foundation to give away some books or Kevin who was already on raising some money to give away free sensory haircuts to families that can't afford that. I just I've got that in me. So it's coming check back in five years. I need an app first. Talk about your tour.
Yeah, so I've been on previously I've been on the Jordans World try or not try ology as trilogy. That's how you pro outset but it was really funny though, is that when I went to my first five book tours, I said try ology I find that funny personally, because that's such a proxy a person thing heard me but I was on the Jordans world Trylle trilogy for this difficult word. And now I'm on fighting for my boys, the move mentor, where we are where we are breaking up the tour and two different chapters. So, I just finished up chapter one of the tour and the next part of the tour will be child or two. And within every chapter of the tour, we are coming out with a list of different cities and different dates that I am going to and what fighting for my voice the movement is for me personally as as I go into these different dates in different locations, I I am doing at busy work within the difference Davidson, who occasions that I m n. But I also as well when I met the towards DOP and when we have our a, a bent, I share some about my audit by by geography that I have written as well as share my children's books as well. So those are some of the things that we do get get to do You, we typically also as well, we have like a queue and a portion where the audience gets to interact with me. And that's one of my favorite parts, because I love being able to interact with people. So those are some of the things that I do on the tour. But I really wanted to audit as well not only for like the ad, the ad Vissi work and getting able to share like my upcoming published work as well as my previous work. But then also as well, just something that I really love about it within like this current theme of my life as that I had really made a mission within the past year, year to be my full, authentic self. And that's really what fighting for my voice the movement is, for me, it's being able to embrace your full authentic self and a allowing others to have the space to do so, as well. So that's why I really wanted to call it that's why I really wanted to call it the move, man because I want people to be their authentic selves. I want people to be who they they are, it's no, it's no matter if the theme of what I talked about or what the subject matter is, everything has one. One thing in common and the and the one thing in common that it has is that is that it's okay to be who you are, as you were saying before we began read recording that it's okay to be you're on a polygenic self. And there's one thing if there's one thing that people can take away from me, I hope as I hope it's because I feel like too many people struggle with that and it's not. And I know what that what that's like and that can be a really dark place and I just don't want anybody else to feel backed by
You're amazing.
Oh, thank you.
I can I be your roadie on your tour?
What does rotate me?
Like, roadie. A groupie. Like I'm gonna get a van and I'm gonna follow you around on my tour. I'm not on your tour bus on my own bus.
I don't have a tour bus. I wish I did.
Well, well, let's get you a tour bus and maybe I could drive it.
Isn't that really expensive?
Let's start a 501c3 and raise money for it. We could have we were talking about we're both actually introverts. We can have silent snacks and reading time. We can listen to some music, not interact at all and just enjoy each other's company.
Okay, but Okay, so first would be music be Taylor Swift.
It can be
I mean perfectly a roll on the tour bots. As long as we get to have that I'm good with everything else.
I um... yeah, I'm into it. Alright, so with for the tour, you haven't come out with the next like chapter two locations. But if I could arrange a chapter two right here in Ohio, right, where I live, Youngstown, Ohio, where there's a low population and it would make complete sense for you to come no university with a speech program. Not a lot of people get the tour bus and drive through. At least
I can drive through. I can do that. I would love to come if it worked out.
So I collected some answers from our fearless fixers who have questions for you.
Yay!
I'll just go in order. We'll just ask them all i These are unscreened we're gonna just go in, we'll kind of out if they're bad. Who was the best SLP you have had? And why? And who was the worst you had and why? I think we already know who the worst one was. You don't have to give that person's name. But, what about the best shout out person out!
Well, that's funny so we know who the worst one was. I think that my best SLP honestly would probably have to be like my third grade SLP I cannot think of her name but I'll have to ask my mom if she she knows her name and get back to you but she was really really awesome and she really really worked with me and then I also loved the E S y SLP. I had every year because she was an SLP let me like play during our sessions. She did not make me sit down in my my my seat and not move and force me to give eye con tact whic is not neuro diversity a firming. And we don't love to see that just made me really anxious and nerve wracking. So
Okay, I would love if your SLPs were fearless fixers, so figure out their names, we'll find them on social and tag.
Yes, that sounds great.
Okay, I don't know about this one. I bet I can guess your answer. How has the CCC and that entire system made it harder for you to find an SLP? who is competent in childhood? apraxia of speech? Has it yet has it affected you yet?
So no, so not for me? Personally not? Yeah. So I wouldn't.
What state are you in?
I'm in North Carolina. So where are your law just recently passed? I'm in the state.
Yeah, so that would be the other thing is that most, probably most speech pathologists in North Carolina have their Cs. Because, interestingly, speech pathologist actually didn't have to have their Cs, it wasn't part of the regulations. But Medicaid did not have a way for clinicians without their Cs to prove their competence, basically. So even though they said you don't have to have your Cs to become a Medicaid provider, you had to show proof of your CEUs because there wasn't any other way to fulfill the requirements. So that's what just happened last week is Medicaid created a pathway for people without their CCC to enroll and be a Medicaid provider. So that's really exciting. So let's we'll check back with you in a few years, you can tell us it's impacting your ability? Hopefully the answer is it's it's never impacting your ability.
Yeah, casuse that's what I would personally hope so I hope that that's not
Do you care if your SLP has the CCC?
No, I don't. And that's, and that's kind of why I have troubles. But like the last question, when I was fully thinking through it, I find that that's a great question, of course, but just because a person doesn't have their CCC doesn't mean that they would, uh, wouldn't. It's just competence is based on training, training, teaching and experience, not a forced certificate product. Exactly. Yeah, that's, yeah, that's what I was going for it. But I didn't know how to phrase that. So thank you.
You're welcome. Okay, how about this one, how has speech therapy affected you and your life.
So very, very. So I mean, it's very much a fact of mine. And that's why I'm such an add bucket for it. And for the SLP filled, because from being a child that couldn't speak until he was five, and then in words, at age eight, sentence structure began an age follow up, but like, forming sentences beyond the age of 12 was still very difficult for me, you know, it's really, really helped me. Now, of course, there's been some ways that it's not so well, a fact to me, as well. So when I was just speaking, like, if you moments ago that there's some SLPs, that wanted me to like, sit down in my chair, and like, try to force me to make eye contact, like those had more so negative effects on me that I would personally say, good effects on me. So just what that I would try to keep mine mindful at having neurodiversity a firming practices. But yeah, it's really, really helped me. So that's why I'm such an advocate for it.
Is he connected at all to current researchers, his reels mention mental exhaustion repeatedly?
So what that mean, if I can ask like, would that mean like, is he like talking to researchers? Or maybe like, do I know what research currently says on it? Maybe? I know both answers.
Let's- let's hear both answers.
So one with the current re searchers, but I have heard of is that they have did very small trials of this and that they don't find that it's so nificant enough. And then I the second question, researchers, are you talking to researchers, so I'm not talking to researchers for that part, but I know what they have said within like previous like con pretzels and such because I do have certain people who report back to me but I'm not allowed to say their names because then they could get in trouble. So I have a little few SLP friends come to me. And they'll be like, this is what they're saying, this is what they're saying. And I'm like, Thank you, thank you give it to me
Moles everywhere, but just little moles,
little moles that travel to these things for me. It's really funny. But yeah, but I have basically heard right now from a ri from a research side that they don't have enough data. In other words, that's how I would phrase it to afford it. But we're also as well, I think that's something that is just worth noting is that most of the time, we are going to test children who might not be as self aware as a 27 year old that's been to not only speech therapy for 12 years, but but have also been in therapy for six years, and very, very self aware as a person. So like, I'm very in tune with, like my internal processes. And just all of the things regarding that, versus if we're going to test us and populations of children with childhood apraxia of speech, they're gonna probably be like, What is this person talking about if he mental mental X? Exhaustion? So I think it's, I think the research is very vital. But I also find it's also vital to to hear from the lived experiences, of course.
Okay, last question. This one is from Jeanette, owner of fix SLP. What's your number one piece of advice for speech pathologists?
I think that my best piece of advice for SLPs would, I think, but really be to know, I think that there's a lot of messages that can be sent to SLPs, even through like force training, or through a certain amount of classes, just the language that people can use is, is sometimes the link is sometimes the language can re symbol that we need to fix speech dis orders, or that there's something that we need to get rid of, quote, quote on quote, and like that is the goal of an SLP. I've had a few SLP friends say that this was like, how it was awarded to them. When they were in like their early, early years, like when they were graduating, I would just say it is to know that the point of these services, of course, is to help build communication and new indication being the PRI marry, goal. And, of course, like the words that you use within the session, of course, and how we might talk about a child's disease a child's disability, just for example, the A adults, voices a round as children typically become they're in and ternal voices. So as we're talking about these different types of things, we want to be sure that this is the way that we want the child to also think about, you know, having a having a practice. Yeah, they have a practice. Yeah, if this is a person who saw chatters like you know, what do we want them to bring up and to leave about as and I will say that that's something that I wished was heavily taken more into consider raishin when I was growing up, for sure, because I was fed a lot of messages that this is something that I should outgrow one day get rid of. And then I had to on the learn that and really learn that has we've been talking about like there's nothing wrong with being different that you can be healed. But just when those early on years were spent a lot differently. And they looked a lot different for me. It made it much harder to be able to learn that but it is possible, of course, but we want to avoid that as much as possible.
Great advice to end the episode.
Thank you.
Perfect. Just another great episode. Thank you. All right, guys, if you're still with us, I bet this was a long episode. Thank you for sticking with us to the end. Give us a five star rating and review. If you love what we're doing. We do not have a Patreon but we do have a sustaining Partnership Program. We'd love $5 a month per listener or supporter. You can get more information about that at fixslp.com And we'll see you next week. Thanks for fixing it!
you're ready? This is the best day of my life.
Oh, thank you!
I just told that to Kevin, who's the singing SLP and my husband John, remember I told you I like gave you a little shout out at the episode that was dropping today. My husband John just heard it. He's like, did you hear the end of your podcast? was like Yes. And I'm about to propose again.
You're so funny. Oh my God.
Never mind that. He doesn't like girls. Never mind that I'm married. Shoot your shot.
Yeah, sorry. I'm sorry. I'm not. Yeah, it doesn't work.
Did you just say it doesn't work like that? I'm dying!
