In this interview, I talk with my friend Joel Troyer about his eight year old son Landry, who has been diagnosed with autism. Joel and I met each other over 20 years ago working at a restaurant in Nashville. And we’ve stayed in touch over the years through Facebook and other means. His story is heartwarming, heart-wrenching, and full of hope. And he’s got some very interesting recent experiences that he had communicating with his son.
Phil Rice 00:39
So Joel, you and I met quite a few many years ago, it’s at least 20 years ago, more than 20 years ago. And at the time, neither of us were parents, or married for that matter. And a lot has changed since then. And while there’s many people in the world that that know something about what it’s like to be parents, most people don’t really have any clue what it’s like to be a parent when a child is facing something like autism, the challenge of being there with them in that, going through that with them and and figuring out how to help them connect with their world and with you in particular. And I’d love to just to hear your story about what that’s been like and kind of go from there.
Joel Troyer 01:44
Um, well, Phil, thanks, first for doing this. And I think one of the first things my wife and I said when this first started for us was, how do other parents who are treating their kids not talk about this and remain so secretive? And I told my wife just before I came on this call, I said, I don’t know how many people will listen to this, but maybe somebody that needs to hear it will hear it. And, and that’s why I say yes to everything, because I don’t know who’s listening. And I don’t know, you know, who may hear that, that absolutely needs a beacon of hope. Because it’s a tough time. And you know, our story started well, with Landry. He was born in 2013. And he was born, oh, he was a month early. But everything was good. He was healthy. He was, we left the hospital at a normal time. And lung function and everything was good.
Joel Troyer 03:02
But, you know, in his first year of life, Landry was sick quite often. And it’s the usual where you go to the pediatrician, now he’s sick, and they give them Tylenol. Right? About an antibiotic, or a steroid treatment. And it just was this cycle in his first year of life, but he still hit all his milestones developmentally. He had, you know, a 50 word vocabulary at two years old. And, you know, he was walking at 10 months, he was, you know, he was a happy little guy yelling at the dog and tell him, tell the dog No, and count 1-2-3. And then we’d race across the yard, just normal kid stuff at that age.
Joel Troyer 03:57
And it was shortly after that, that Landry stopped developing new words. And then it turned into he started losing the words that he did have. And we kept asking, you know, is something wrong, is something wrong? We’d ask the pediatrician. We have family members who are in the medical field, and they’d say, Yeah, well, you just had a little girl and you know, don’t worry about it. It’s fine. Well, it’s never okay if your child starts going backwards developmentally, there’s obviously something wrong. And we were first time parents and we we didn’t know, we just didn’t know. And it was November of 2015 that the question was answered because it was over the course of two days in a weekend, where Landry completely regressed where it was. Severe separation anxiety he was he was biting himself and chewing on his own arm, banging his head… he would pace in a circle around our living room for literally for 45 minutes to an hour, and you couldn’t stop him, he would just walk in a circle. The only sounds that would come out of his mouth were just, you know, incoherent, you know the D sound, Dee Dee Dee.
Phil Rice 05:19
I can’t imagine.
Joel Troyer 05:20
At that point, we knew something was wrong. And I remember that weekend we were, we rushed him to the doctor, the doctor said, I don’t know he was fine. And he said, well, he was worried about a brain tumor. So we took him and we got an MRI done. And that was normal. And at that point, all the answers just stopped. And they said, well, it looks like he’s got autism, and there’s nothing you can do. we’ll refer you to a neurologist, which they said they would do, they never did. And at that point, you’re on your own, you are literally on your own. The state has services like ABA, things like that. But they they base everything from a cognitive standpoint. Well, cognitively, my son was okay. And now he’s not. So my wife put in a Google search. It said, if it’s not autism, what is it? We always thought it … and I think a lot of people think this way, that you’re just born with autism. And what I’ve learned since that day has been mind blowing stuff. But our search came up with a doctor in Los Angeles, California named Michael Goldberg. And he said, You know, these kids have immune issues. Their immune systems are essentially they begin attacking themselves. And he we contacted him. And you know, his waiting list was like three, six months out something like that it was crazy. We said please put us on some sort of a cancellation list.
Joel Troyer 07:06
On Christmas Eve, I got a phone call that said, we have an opening January 5. And we said book it so we you know we booked flights for for us to fly out to Los Angeles to see this doctor. And in the meantime, he put us through a series of labs that we could do locally, just blood tests and and then when we got to California, we reviewed those, those tests and Landry had NK cells that were extremely low. And now they’re natural killer cells. He had ANA titers, which are anti-nuclear antibodies, which show signs of autoimmune disorder that he said, were as high as you could basically go. And he asked us questions like, is he banging his head? And we said, yeah. And he said, is he doing it against the wall or against the sofa? And we said, well, he’s been doing it on the sofa. And he said, Well, he’s got a headache. His head hurts. And he immediately and there was other things too, obviously, that that he looked at, but he immediately put us on a medication called Valtrex. It’s an antiviral, they use it for herpes. Even though Landry did not test positive for HSV 1 or HSV 6, he said, I would like to try this. And upon putting him on that medication, and in a week’s time, Landry had lost his ability to eat with a spoon, okay, he would take his yogurt and use his hand to basically just hand feed himself with yogurt. You can imagine what that was like for a two year old.
Phil Rice 08:54
Joel Troyer 08:54
And I watched him one morning, I put his yogurt in front of him and he picked up his spoon and he just started eating. He was outside and a slide he hadn’t played on in, you know, for the whole summer. And this was in January, we had an unusually warm day in January here in Michigan. And he went up and down that slide. I don’t know how many times too many times to count. I have it on video. It was I was just blown away. I was like, okay, obviously, something is going on here.
Joel Troyer 09:23
We had also started and I hear this one so much from parents from, you know, from parents who their kids are going through stuff like this. My kid won’t sleep. He wakes up at two o’clock in the morning and he’s wide awake. Well, that is Candida. It’s yeast overgrowth in the gut, the gut cannot control the Candida and essentially what happens is these children are drunk on their own yeast. And Landry would be up at 2am literally every night, jumping on his bed, laughing giggling and I would stay up was him until about at the time I had no idea. I thought he was being naughty. Okay, I thought we had a sleep disorder. I would be up with him till seven o’clock in the morning. And it’s time for me to basically go to work, and he would pass back out. And you can imagine how our days would go from there and how exhausting.
Phil Rice 10:20
Joel Troyer 10:24
And every time I talk to a new parent, I’ll ask that question is your child waking up at 2 or 3am? And they’ll say, Yes. I go, your child has Candida, and you need to get them on an antifungal medication, you need to cut carbs and sugars out of your diet out of their diet. And you need to get it under control. And we did that we put him on an antifungal medication, he went through what’s called a Herxheimer reaction, which is, it’s called die off really where that Candida gets in their bloodstream, and it’s, it’s about five or six days of pure hell. And then on the opposite side of that is a child who started sleeping all night, a child who is better rested, because that is that Candida is under control. We changed his diet, we, you know, we did food sensitivity panels, which aren’t always accurate, we did heavy metal testing, and he did have, you know, high amounts of mercury, aluminum, things like that in his brain. And we just, we just looked at the whole body. And and I think most people don’t realize, they think Autism is a developmental disorder. But autism didn’t exist before 1941. There’s nothing in in the annals, medical annals, you know, going back as far as you can go, and they have been thoroughly searched and exhaustively searched, there is nothing like autism, what we know as this autism, before 1941. And a doctor by the name of Leo Kanner discovered it. Ironically, his second patient, child had just had the smallpox vaccine.
Phil Rice 12:16
Yeah, that’s something that I had wondered about leading up to us talking, Joel was, you know, there are certain conditions and disorders or diseases that, you know, were discovered in the 20th century, let’s say, but, but you wonder like… I mean, let’s look at a commonly theorized biblical example, of some of the situations that were encountered, that are described in the Bible, that nowadays one would look at that and might be inclined to go, Well, that sounds a lot like epilepsy, but they just didn’t know what to call it back then. And, you know, there’s, there’s got to be diseases like that, that we probably didn’t know about, or know what to call, you know, cancer probably existed before we knew as much as we do today, but they just didn’t know what to call it. And people would just, the mortality rate was not good for people of a certain age, and it just fell into that category. What you’re saying, is your research that you did suggested that there’s nothing remotely like autism, before that point in time. Am I understanding that right? Because that’s very interesting.
Joel Troyer 13:29
That is correct. They were there was that social, that social aspect of it? It did not exist. I mean, at least not in high… if it did, it was extremely rare. So to put that in perspective, the DSM codes for autism diagnosis, you know, in the 70s are different than they are today. But if you actually look at those, and I hear this as an excuse all the time, if you actually compare those side by side, it’s essentially the same thing. They’re not that much different. It is an extreme social disorder. Oftentimes, that involves the loss of ability to speak or communicate. And in 1980, it was one in 10,000 Children. Phil, right now, as of today, the CDC puts it at one in 59 children. This is the largest epidemic that we have ever seen in human history, and it doesn’t get discussed in that manner. And when I say autism, I mean, you know, the people like Jerry Seinfeld, who said, I might be on the spectrum. No, I’m talking about these kids have a severe disorder and these kids. You know, I watched my son, and he desperately wants to play with other kids. And we were just in Virginia a couple weeks ago, and in the hotel pool, there were a couple of kids who were in his age group. And he desperately wanted to interact with them and play with them. And when it was time for them to leave, he got out of the pool with them. And he just stood there and watched them. And his face was, well, as a dad, I have a hard time putting that into words. He wants friends, he wants to interact, but his body will not allow him to do it.
Joel Troyer 15:24
You know, we did some more in depth testing, we’ve been to a lot of doctors we’ve been from, you know, Panama City, Panama, Bahamas, New Jersey, Chicago, Wisconsin, la Michigan, Pennsylvania. We’ve been all over. I’ve seen my son, you know, as his body tries to normalize and those autoimmune issues as we try to stabilize his body, I see improvements with behavior. But we’ve been chasing that. We’ve been chasing our own tail, you know, trying to get his body healthy in hopes that he would communicate again, right. But he has apraxia, his whole body is apraxic. His eyes are apraxic, he’s orally apraxic. And his motor function, its motor delay, okay, it’s motor planning and motor delay. So his mind is cognitively and I will say this for every child, I believe this wholeheartedly every child with an autism diagnosis. They’re there, they’re all there. They’re brilliant, and they’re all there. But because of that motor planning issue, their bodies can’t do what their brain tells them to do. And we’ve done some more in depth testing, where we have actually found now auto antibodies against myelin, which is a major pathway in your brain that would show why his you know, his speech, dropped it, we’ve we did find HSV 1, which would show why the valtrex worked. So, you know, through the course of everything we’ve done, we’ve been getting answers.
Joel Troyer 17:12
But ultimately, you know, you want to be able to communicate with your child, you want to be able to hear I love you, and you want to be able to tell it to them. And you want to believe they hear it and understand that, right?
Phil Rice 17:23
Joel Troyer 17:24
You you will move heaven and earth for that to happen because you want the best possible light for your child. And that’s what we’ve done. We’ve spent hundreds of thousands of dollars that we don’t have doing this. And thank God, we’ve, you know, we’ve recently stumbled upon something new that will give him that ability. His school, they tried to work with him on an iPad, it’s called the core board. And it’s multiple screens, you know, pictures with words, it’s all these different things. But with that motor planning, apraxia and all those issues, he really struggles with that. And his his speech therapists actually came to our house to show us the core board, like we need to use this at home. And I watched her fumble through it. And I’m like, Well, how the heck do you expect him to go with the you know, she was trying to find the right page. And I was like, that’s, that’s not going to cut it. So that’s that’s basically where we’re at right now.
Joel Troyer 18:30
Now, we can, we can go one or two ways with this, we can continue talking about, you know, what we did physically? Or we can talk about, you know, what we’ve recently discovered and what’s happened here in the last in the last year for him? Because honestly, I think if there are parents out there who have kids who have this diagnosis, I think you need to find a doctor who will look at their whole body. And that will help their bodies regulate. It will help them feel better. I always compare it to when I have the flu, and somebody expects me to perform my job effectively. They could pretty much kiss that goodbye. I don’t feel good. I don’t want to do it. Right? And that’s a normal human response. You know, when you’re sick, you don’t feel good, you can’t perform well. Their bodies are sick, and their bodies are there. A lot of times they’re in pain, and things are happening, they have no control over. And that we sit down and we expect them to, you know, match colors and you know, perform all these tasks. No, it’s just it’s not going to work. So you have to get their body into a state where they feel good, where their tummy doesn’t hurt, where their head doesn’t hurt. And that’s so important and it’s so overlooked by mainstream medicine. They just think it’s developmental and we are not even going to take the time to look at what’s wrong with their body, we’re not going to look at immunology. And, and that’s a shame because so many kids are left behind and left in pain. And their behaviors reflect that. And you know, they get aggressive when they get violent, generally it’s frustration, but it’s also pain.
Joel Troyer 20:19
And that it, honestly it rips my heart out, it truly rips my heart out that our mainstream medicine has left these kids behind. Because there’s so many and it continues to grow. The diagnosis continues to grow. I have a friend who we’ve we’ve done some treatments. It’s because his gut health was so bad. We did FMT, which is only in clinical trials here in the US, you can only do it for C diff here in the United States. A doctor I know, Dr. James Adams, he’s out in Arizona State. He’s running the clinical trials for kids with, you know, gut dysbiosis different diagnoses like that. For for autism, and he’s working diligently to try to get this approved for our kids here in the US, because what we’ve seen are 25% to 50%, increases in behaviors, cognition, you know, because of this treatment, in order for us to do it, I don’t have time to wait on a clinical trial. In order for us to do it, we had to leave the country. And we saw it’s a slow process. You take fecal bacteria from healthy donors. And basically you implant that into the microbiome of the child. Okay. It’s, it sounds gross, but it is what it is. It’s been around thousands of years, the Chinese developed it originally. And you just try to create a whole new environment in the gut, because diversity is key, right? That that creates help. And we were doing that with Landry.
Joel Troyer 22:02
Well, a gentleman named JB Hanley, he’s an author. He’s pretty well known in our circles, he created Generation Rescue with Jenny McCarthy. And his son is older than Landry, he was, he’s 18. Now, he contacted me about this treatment for his own son. And so we, I said, Hey, you know, give it a shot, see what you could do. And through that, we’ve kind of remained in touch. And you know, I’ve never met the man in person. He lives in Portland, Oregon. But well connected guy, just a great guy, a hard worker and genuinely cares about his son. And he was the same thing as me. He ultimately wanted that communication for his non speaking son, and was moving heaven and earth to get there. Right? Well, it was, you know, our text relationship, I guess you’d call it. It turned into a phone call in June of last year. And he just said, Dude, you got a tissue? And I said, you know, I’m smoking a port butt, but no, I don’t. And he said, Well, get one.
Joel Troyer 23:29
And we started talking, and he said, Jamison is communicating with me. And I was like, what? What do you mean is communicating with you? And he said, it’s a new program called Spelling to Communicate, where it’s, it’s only six years old, it’s brand new, and that the therapist who developed it has been in speech therapy, working with our kids for the last 25 years, but she realized that these kids that she that she’s working with are all cognitively, above average, but everything that’s holding them back, you know, in their world, in school, and whatever else is all motor, it’s all motor planning, all motor delay. There was some new science that has just come out from the University of Virginia that helped her make this discovery. And there’s more on the way, by the way, peer reviewed science. These kids their eye tracking, you know, from the brain to the eye to the hand, it’s it’s literally impossible for them to make their bodies do what they want them to do. And so what they do is they take that fine motor and speeches as fine motor as you can get, and they put that into gross motor. So it’s the way you sit. It’s the way your shoulder moves. And they put a simple letterboard alphabet in front of these kids. And you start off by reading educational lessons. Have you know a paragraph, there’s key words in that paragraph that you spell As you’re reading the lesson, so for instance, last night was what was it Scandanavia was one of the words that I spelled for Landry. And you know, and then at the end of that short lesson, we put the letterboard front of him Tell him it’s time to spell give him you know, commands. And he will use his finger to point at the letters to spell the word.
Joel Troyer 25:26
So we went to I tried to do it at home because of the COVID shutdowns last year. Right? But the boards and and the book, you know, the first book, I was like, all excited, I’m going to do this with Landry. Well, that that didn’t go very well. Landry was not having it. He was aggressive. He was violent. And he was angry we were doing this, I had no clue what I was doing. And I was complaining to JB about this. And he said, Dude, you’ve got to go to Virginia, you’ve got to go to the Therapy Center. He said, I don’t have any other advice for you.
Joel Troyer 26:02
So finally, it was two weeks ago, we went to Growing Kids Therapy Center in Herndon, Virginia, just outside of Washington, DC. And we sat down with Elizabeth Vosseller, who developed this and she has a team of therapists there that all do this together. I watched her sit down with my son, and I took a video. And she just talked to him like a person like a normal person, I was largely ignored. She said, Landry, I know you have trouble speaking, using your mouth. And there’s things in your brain, B-R-A-I-N, that are preventing you from doing that. What I’m going to do is teach you a new way to communicate using your hand. And then she picked up the letter board and said Landry spell brain, and he just B-R-A-I-N. And I my jaw drop off. Here’s my son who I, I don’t, I didn’t know he could spell. I didn’t know he could do any of this stuff. I had no idea.
Phil Rice 26:59
Joel Troyer 26:59
I didn’t know, I knew he was in there. You know, I know Landry knows what’s going on. But I didn’t know how smart he was. I didn’t know if it really registered. And I watched this lesson progress to the point where she did a lesson on Bigfoot, the monster truck, right? And, you know, the guy who made Bigfoot was from Missouri, and she spells Missouri for him during the lesson. And then afterwards, I watched him, M-I-S-S-O-U-R-I. And I, I started crying. I mean, I just amazing, I have tears coming down my face, because my son who… it was the pinnacle moment of our trip.
Joel Troyer 27:45
And we were there for three days. And I watched it and now it’s not easy, because you’re developing a whole new pathway in the brain for their, you know, for that apraxia to be overcome by developing that new pathway in the brain and for them to be able to hit that letter they want. Yeah, because I’ll see him get totally frustrated. Because he wants P but he’s hitting Q, you know, or the R. And, you know, there’s queues, they train you as a parent, you don’t touch their hands, you don’t, you know, you don’t interact with them physically. You interact with them by coaching them. And you know, trying to keep them on point and allowing that connection to, to take place in their brain. To put it all together to hit that right letter. Sometimes it is Boom, boom, boom, you know, it’s on point every time Other times, you know, it takes it takes quite a bit. Now Landry is eight years old. And so he’s squirrely, he doesn’t have a lot of control over his body. I know guys and kids who’ve gone through puberty. They do better with with this, they can sit through it easier. You know, I tell you what, Landry while we’re reading the lesson, and all these kids are the same pretty much. He would be roaming around the room. He’s not sitting there on your lap. He’s walking around the room looking out the window, you know, dangling something in front of his face. It looks like he is the furthest thing for paying attention to what you’re saying. Yeah. And I had to overcome that in my my head because I thought Landry didn’t like to read books because he wouldn’t sit with us anymore like he used to when he was little, right? And little did I know, he hears everything. And in fact, his sense of hearing and his sense of memory are overdeveloped because of his lack of ability to speak. And that doesn’t make him savant. It just means that he hears everything. He listens well, and he remembers literally everything.
Phil Rice 29:48
Joel Troyer 29:49
And so I remember leaving Virginia, this was really cool. Because we just had these these incredible moments down there in Virginia where I watched my son just break out of his shell and I saw how proud he was, you know?
Phil Rice 30:03
Joel Troyer 30:05
When we left Virginia, we drove back to Michigan and we left there. And we got into Maryland. I said, Okay, let’s try this. And I said, Landry, we just left Virginia, we just got into Maryland, and I spelled Maryland did the same thing for Pennsylvania, Ohio, Indiana, and and back into Michigan. And his grandfather, my dad came over the next day, and he said, I would kind of like to see this. And so I took him to the other room and was quiet. And I said, Landry, what was the first state we came to when we left Virginia? And I held the board up, and he hit M-A-R-Y-L-A-N-D. And he did the same for I said, what was the last state we got to where we live? And he spelled Michigan. And it is, it’s just like for an eight year old kid. I mean, I have a seven year old daughter who I consider pretty intelligent. And she’s she saw this and she said, Daddy, nobody in my class could do what he’s doing.
Joel Troyer 31:12
It’s, it’s absolutely incredible. To see this now, I think a lot of people on social media think that he’s just openly communicating right now. And we’re not there, right? This is a process and it’s a it’s a long process, especially for these little guys. It’s quicker with the bigger kids. I know some guys who actually one of them just wrote a book. by himself, it took him a year and a half. And he did it by pointing to letters and spelling, while his his communication partner transcribed for a while.
Phil Rice 31:44
Joel Troyer 31:45
And really good book, by the way, Gregory Tino’s his name. And if you can find it on Amazon, which you can, buy it today. It’s amazing. LINK: https://amzn.to/3ysfnXE
Phil Rice 31:53
Joel Troyer 31:54
JB, who introduced us to this, you know, JB has been doing the PR circuit. He’s been doing interviews with, you know, Jenny McCarthy, Robert Kennedy, Jr, Dell Bigtree, Jr. or Dell Bigtree on the high wire. And he wrote a book called Underestimated about Jamison and their journey to this. The book is on Amazon. It’s right now in the I know in autism category, at least, it’s far and away the number one bestseller on Amazon. And probably one of the top sellers overall, I believe. The book, he had Jamison, write a chapter, and then five other young men who were our spellers. They also wrote chapters in the book, the depths of the minds of these young men. The average person would drown in those depths. They are so graceful, they are so eloquent. Poetry naturally falls off their fingertips, when they when they spell. It’s, it’s it’s absolutely stunning. It’s beautiful. And I have yet to meet a person who hasn’t cried reading that book. Because everything we thought we knew, is dead wrong, dead wrong. We think these kids are not intelligent because they can’t speak. And because their body is telling them to do something opposite of what they want to do. Gregory Tino, and I just saw this post last night now I’ll share this with you because I think it’s a beautiful example. Gregory is 25 years old, okay. He had a long time caretaker who just passed away. And that’s devastating to a kid like Gregory Okay.
Phil Rice 33:48
Joel Troyer 33:49
And to his family, a huge part of his life. These these kids don’t have a lot of people who genuinely care about them. You know? His mom, Linda asked Gregory if he would like to go to the funeral. And he said, No, he’s scared to go. And she thought, well, he’s scared of death. You know, he’s scared of dying. He’s talked about this before. He’s typed about this before. And come to find out that Gregory was scared to go to the funeral because he was afraid he would do something embarrassing, like laugh instead of cry.
Phil Rice 34:32
Joel Troyer 34:33
And he pointed that out to her. He was he can’t control his body. And you talked about an eye opener as a parent as you walk a fine line as an ASD parent of is that kid being a little jerk? Or is that kid out of control and can’t control what he’s doing right now? It’s it’s so difficult. I can’t, I can’t put it into words how difficult that is, when to discipline, when to try to be more understanding when to be patient when to be kind when to be. Because it’s, I’ve got three other kids one, seven and four. That’s easy. I know when they’re, I know when it’s time to do that, and they can tell me when they’re hungry. They can tell me when their tummy hurts. They can tell me when they get a headache. You know, they can do all those things. With Landry, I have no idea. I’ve had him go crazy before. And you know what it was? He wanted an orange. How do you… How do you do that? As a parent, it’s so it’s such a difficult scene to navigate.
Phil Rice 34:37
Joel Troyer 34:53
And if I hear one more person Tell me Well, God did this you because he knew you could handle it? I mean, I want to knock somebody’s head off. I knew that. Don’t say that to people. If you’re listening, don’t say that to people.
Phil Rice 36:04
Joel Troyer 36:07
It’s, it’s like one of the worst things you could say just, if you’re listening to this, and you have a priority, who’s going through this? Tell him you love him and tell him you care and try to be there for him whenever and however you can, because they have needs, if they can help you figure out what that need is just try to meet it. Because it is so so difficult, as a parent to go through this and to walk this road, and I will never go into all the details of what it’s like, publicly, because I have too much respect for my son. And I don’t want to embarrass him. And it’s not fair to him. If he wants to talk about that, when we get to that point where Landry is openly communicating, he can talk about it. But until that day comes, I’ll never get into all the details.
Phil Rice 37:01
Maybe that’ll be in his book
Joel Troyer 37:03
That’s in his book. Absolutely. And you know what? We’ve got to get to that point, you know, now I know my son is brilliant. I know that he can spell and I asked the therapist while we were there. I said okay, so I got to make sure I’m on the same page here. This kid can read it. She goes, how the heck can he spell if he can’t read? Touche. He can read he can. He’s listening. He knows he’s very, very intelligent. He’s very smart. But he is not openly communicating. And we have to get that pathway created. And it’s going to take a lot of work. It’s going to take a lot of time, a lot of frustration. I asked JB the other day, I said, or actually he called me. And he was like so so what’s your plan, and I said, we’re gonna grind at home. Which another thing real quick, that was so cool. You know, going through that aggression and everything when I tried this at home with him before we have ever went to Virginia. And I gave up. But then, with the guidance of these therapists, they’re in Virginia to sit down with Landry and read to him and have him sit beside me and to have him start spelling those words with me. And just our back and forth. It was the first time that my son and I were a team. Does that make sense? It was the first time that we had connected in that way.
Phil Rice 38:38
Joel Troyer 38:41
And it was it I mean, excuse me, that was a that’s a moment. Right? That’s that’s really cool. And he wasn’t aggressive. He wasn’t, you know, I hate you don’t make me do this. And that’s carried over now at home. Now. It’s not perfect. He has bad he’s had some bad nights. But no, I told you up, we’re gonna grind at home for a few months. And then I found a new practitioner in Chicago, who I want to go see, and you know, just you got to keep going back and just keep updating. And he said, Dude, go to California. Dawn Murray Gaben is her name. And that’s where JB had been taking Jamison, and he said, she is the best of the best. And I said, Well, I you know, yes, because why would I say No, he hasn’t steered me wrong yet, right? So I just I just booked the trip for end of August and we’re going to be out there to go see Dawn Murray. And he said he seems so many kids just become open after visiting with her for a couple of days. There’s some incredible videos out there where you, you get to see these kids, these young men talking to their mom or their dad for the first time.
Phil Rice 39:58
Joel Troyer 39:59
And Telling them what’s on their heart. And it is, it’s beautiful. And I told my wife, I said, If I could drop everything, if I had a way to feed my family for six months, I would do this in a second and then become a therapist. Because those kind of moments are… What a way to make a living, right?
Phil Rice 40:20
Yeah, no kidding.
Joel Troyer 40:22
To see that. So, so I am, I tried to spread the word about, you know, treating autism and looking at the whole body and looking at it from a medical perspective. But this is brand new to me in this, this Spelling to Communicate because what we all want, you know, if there’s one in independent studies have one in 32 kids now with autism. And as I said earlier, the CDC says one in 59, if 40% of those kids are nonspeaking, this changes everything. This changes, this changes, futures for everyone. And just like I, I’d been in Virginia for those three days, our whole future changed. Landry’s whole future changed. Yeah. You know, he can be once he develops in this. You know, it’s it’s a regular school. It’s college. It’s, there’s, the possibilities are endless, right?
Phil Rice 41:23
Joel Troyer 41:25
And many of these young men and women are saying that because of this, they feel like they can talk. Heck, Jamison feels like he could talk, he’s gonna start taking speech therapy again. Because it’s just created a whole new pathway in the brain, that it’s changed everything for them. So really cool stuff. Eye opening stuff. It’s, I know that the powers that be within the world of autism in the ABA community, they do not agree with this, they are adamantly against it. They feel like it’s fake, they feel like parents are manipulating their children to spell, all you have to do is watch a video, all you have to do is see it in person to know that these kids are in there, and they’re brilliant. And Autism is not cognitive, it is definitely motor. They just can’t control their bodies. And so that’s where we’re at right now. We’re grinding at home, we’re watching my kid break out of a shell that he’s been trapped inside for the last five years. Right? So it’s, it’s really cool.
Phil Rice 42:42
It’s so great to you know, it’s good to be able to give people in a tough situation, a general sense of hope. And there’s various ways they could derive that, right, they could just derive it from their own faith, from the support of friends and family of just, you know, well, just some day, you know, maybe it’ll get better. But to be to experience what you did so recently, where it’s like, today’s here, hope is happening, you know, it’s
Joel Troyer 43:15
Phil Rice 43:16
It’s there. It’s, it’s, you know, something really significant is happening. That’s, that’s so encouraging. And I hope, I hope that that the word of this gets continues to get out because I imagine that a situation that challenging tends to breed a sense of hopelessness, you know?
Joel Troyer 43:42
Hope is tough. Yeah. And you know, I would go into different treatments different therapies with ultimate hope and it seemed like every time we would find something new that was magic for another family that we knew, you know, I would go into that but just like okay, this is going to happen this is it for Landry, right. And then it didn’t happen now. We would see improvements we would see good things from that but ultimately, you know, the rabbit in the hat that we were trying to get to pop out was communication with speech.
Phil Rice 44:23
Joel Troyer 44:25
You know, his little sister it his little sister Cora, she’s seven and I don’t know for how many years now every night at bedtime. She prayed for Landry. God, please help Landry feel better and talk again. That’s how she starts every prayer. And in my mind, I think of that as, Okay, you know, when, God willing, if He heals Landry’s, he’s going to be talking. Right?
Phil Rice 44:52
Joel Troyer 44:52
There’s going to be speech. And it hasn’t happened. And then this happens and it’s not what I expected, you know, it came out of nowhere. But my goodness, if my son can communicate with me and has an avenue for that… language is different than speech, right? We all have language, these kids have language. They just can’t present it in speech form, they have to do it, you know, with a simple board with the alphabet on it, right?
Phil Rice 45:27
Joel Troyer 45:28
But either way, they’re able to express their thoughts, their dreams, their hopes, their desires, their pains, their frustrations, all of that. And that’s what we take for granted as people who can do that every day with no issue. So you can imagine how how that feels to these these people, these kids. And it’s, it really is, it really is beautiful. And I would encourage anybody who’s listening to go on Amazon and get JB’s book Underestimated, because it, even if you do, even if you don’t know anybody who’s going through this, read the book, it is an absolutely beautiful, beautiful book. And I had a friend of mine text me, she lives in Wisconsin, and she said, I’ve been married to my husband for 20 years, and I’ve never seen him cry. And last night, and this morning, he’s a blubbering mess. And it’s not because it’s sad, it’s because it’s so beautiful. Because if you can empathize with what these kids go through, if there’s a banana and a pencil on the counter, they want the banana, you give them the pencil, right? And then they act out, and then they get in trouble for acting out. That’s, that’s the comparison. I mean, can you imagine going through life that way? it you know, JB said that most of his son’s behaviors were he was self harming himself, he would hit himself so hard, they had to go to the ER. And that’s discussed in the book. And he said, that’s gone. It’s absolutely gone, since his son is openly communicating now, those those behaviors, those frustrations.
Joel Troyer 46:10
And I think about my own son, and I know his behaviors, and you know, how frustrated he gets and what that looks like, within our household. And, I mean, I can’t get there fast enough. I want to get to know him. You know, I know Landry, but I don’t really know him.
Phil Rice 47:33
Joel Troyer 47:33
And so this, this is a beautiful therapy, a beautiful way to do that, which is going to open that door where like I said, his hopes and dreams can finally come out. So we’re excited. We, you know, I had started giving up on hope I thought, Okay, this is, this is what life is going to be forever. And Landry is going to be with us forever. And we got to, you know, figure out what that looks like. And he’s only eight, right? So, I’m always one where you plan for the worst and hope for the best and hope was kind of diminishing, I tried everything I knew to try. So all of that, and here the cheapest therapy we’ve ever done…
Phil Rice 48:30
Yeah, there has to come a point I would think where you you think we need to, we need to stay realistic here and start, you know, adjusting our expectations. And you know, those are natural coping behaviors that anyone would go through. So what a blessing what a gift to, to be given that flash of new hope so to speak. As if to say, you know, don’t scale back your expectations just yet. Yeah. There’s there’s new information. That’s just that’s, that’s so fantastic. I’m really, really happy for you and your family.
Joel Troyer 49:06
Isn’t it funny how God answers prayer, not the way we see it, though, or way we think it’s gonna happen. We have it in our own minds, what its gonna look like, and God throws us a curveball, but ultimately, He answers prayer, and He’s doing it in a way that I think it’s going to be more effective. Honestly, I do. Yeah. There could be this new treatment tomorrow. That’s gonna help apraxia. But does that mean it’s gonna work for every kid that has apraxia? Yeah, I don’t know of any drug that ever has a treatment that ever has, whereas this is it. Elizabeth told me that this has a 100% success rate with the children that she’s worked with and whose parents have stuck it out for the long haul. She’s had parents quit. She’s had, you know, they just say it’s too hard. We can’t do it. And that’s heartbreaking because I, it’s heartbreaking to think about that child.
Phil Rice 50:14
Joel Troyer 50:15
I’ll be honest that that tears me up. But she said, it’s, if you stick it out, and you put in the work, it’s a 100% success rate. And I asked her this, and I know JB asked her this as well. Have you ever met a kid who cognitively they just could not do this? And she said, No, no, I have yet to meet one. So that really puts it in perspective, you get some kids who are pretty severe, you know, who are really in a bad place. And they can do this, they can absolutely do this, they can communicate by simply moving fine motor to gross motor, and pointing at the alphabet.
Phil Rice 51:05
Joel Troyer 51:06
Phil Rice 51:08
Thanks for your time today, Joel. And thanks for sharing this. I’d like to plan on informally following up with you at some point, since there are there is such new developments here. Maybe in you know, six months to a year or something we we chat again and see where things are at. I’m excited and very optimistic. I’m sure you’re in even more so in in that place than I am.
Joel Troyer 51:34
Oh, absolutely. We’ll take it, you know, one day at a time. That’s all we can do. It’s tough.
Phil Rice 51:40
One day at a time. That’s right.
Joel Troyer 51:42
Okay, we got to go get that lesson done. And it’s so it would be so easy for me, especially with three other kids, you know, a small farm and work and all these different things to just oh, we’re not going to do it today. But I’m refusing to let that happen. And I’m refusing to let a word go unspelled.
Phil Rice 52:00
Joel Troyer 52:00
If he’s having a bad day, the lesson may get shortened. But you know what, if we’re halfway through a word, and he’s refusing to cooperate, I don’t care if it’s three and he’s gonna finish that dadgum word. So, and that’s the mindset that you have to have something like this. So we’re gonna persevere with this because it’s for him. And it’s, it’s for his, it’s, it’s for siblings. It’s for us, but mostly it’s, it’s all about him and breaking him out of that trap he’s been in. I do expect I’m excited to see where we’re at in six months, it’s gonna look completely different, you know, we’re only a few weeks in and it already looks different. So that that keeps you going, you know,