This week on Real Life Momz, we discuss autism. I am honored to have Jaime, Frank, and Kell Farmer join me - Kell was diagnosed with Autism at an early age and has been unable to express himself verbally for most of his life.
Jaime and Frank share their story of strength together and how Kell found his voice through a new therapy called S2C. With this miraculous therapy and for the first time in 15 years, they can finally have a conversation with their son.
We learn about Kell’s beautiful journey, and we hear from him DIRECTLY about his experiences with autism and his message for other parents and children dealing with the same condition.
Join us on our Real Life Momz Facebook group at facebook.com/groups/reallifemomz/, where we will continue to connect and share resources.
Book: Underestimated: An Autism Miracle by J.B. Handley (Note: As an Amazon affiliate, at no extra cost to you, we will earn a small commission from qualifying purchases.)
Kell's blog: http://www.wordsyouveneverheardmesay.com/
Resource website for spellers and parents (how to find a practitioner): https://i-asc.org/
Clinic in VA (all practitioners are trained at this clinic): growingkidstherapy.com
Real Life Momz website: https://www.reallifemomz.com/
It takes a lot of caffeine to keep up with kids, so support the Real Life Momz Podcast with a cup of coffee https://www.buymeacoffee.com/reallifemomz.
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Welcome to Real Life Momz, I'm your host, Lisa Foster and Real Life Moms is a podcast that's all about connecting moms through real parenting conversations. I believe that moms have so much insight and knowledge, and together we are powerful. On this podcast, we give moms a voice to tell their stories and share their expertise and resources through real conversations. And this week, we are talking with Jaime, Frank, and Kell Farmer, son Kell, has autism and is nonverbal, and they are here today to share their incredible story about Kell and how he finally found his voice.
Hi, Frank, Jaime, and Kell welcome to Real Life Momz. I am so excited to have you all here today. And first of all, I have to say you two as a couple or as a whole family. You guys are so inspiring. I mean, I've had the privilege to work with Kell and one of your other sons too, and you guys just come that you like show up; you're like this incredible team. You love each other, and your family and your love is just palpable. Like it fills my therapy room up, and you're just positive, and it's just so infectious.
So I honestly love being around all of you, and I'm really excited that you're here today to talk about your story. Well,.
Thank you so much introduction. That means a lot to us. Thank you so much,
<Laugh>. Well, honestly, it, it's, it's true. It's, it is true.
It's, Well, thank you. Um, we, we try to stay positive, and we try to put on a, you know, have a united front and, you know, we're both committed to the best for, for all of our boys. That's why we're here. Yeah. That's why we're here today.
And that's, that's why you're here. Now you guys have a really incredible story, and it is about Kelly, your son, who's there too. Kell do you wanna say hi as well? Hi. Hi, Kell. So you guys have this amazing story, and, um, my thought was, you know, if one person hears your story, that it can make a difference in their child's life, then it really needs to be told. So I don't think, think anyone can tell this story better than you guys <laugh>.
So, yeah. So tell us a little bit about your family and just, this incredible story about Kell.
Yeah. Our, our purpose is, is to reach, anyone. And if you're, you're right, it's just one person hears this and it, it can help them then, you know, that's, that's our goal. Also, I guess I can start with, you know, we, Frank and I, have been married for 20 years. We are from Baton Rouge, Louisiana, and we have three boys. Kell is 16, Luke is 14, and Beau is 11. And we moved to Colorado, uh, about six years ago for a better life for Ke because wh where we were, the services weren't as great as they were, or as, as children get older, the services kind of dwindle.
And so we knew that Kell was gonna need more, and we were not ready to give up on him yet. So we started looking, and, um, our path led us here to Boulder, Colorado. And what we found when we got here just surpassed everything we ever thought we could have.
2016, we had, you know, Kell was about 11 years old. He was diagnosed with autism and nonverbal autism. Um, and we really had no idea of what he was capable of, but he just had such a charm and a charisma and attraction of people who just wanted to be around him that we always knew he was special, but we really had no way of what he could do or what he knew. And, um, being from Louisiana, you know, much of the deep South, uh, is, is quite a bit behind in the, uh, the how-to part of dealing with children with autism.
So, we made a short list of states during a dream session one night, we sat and talked about what we would do if we could; we were kind of at a crossroads for Kell, where we were, where we were nearing a moment in time where the best we could hope for were meaning menial tasks, you know, in, in, in the society. And, you know, at 11, that's, that's a terrible thing to consider is, is the, that, that maybe all there is, I have to give just an incredible amount of credit to my wife who entertained the getting out of the comfort zone of where would we go if we could, where would we go to get the very best we could find if we could do it?
And, you know, coming from a large family, South Louisiana family is everything. And, um,
Family who are very supportive, very, and have always helped us so much. You know, saying, saying goodbye to that was, was very hard Yeah. To, to go somewhere on, you know, where you knew, where we knew no one, and we knew, you know, nothing had no one here. Right. Um, that was very intimidating, but.
Particularly because we've got, uh, this is a great time to shout out to Jaime's mom and dad, and just so critical in helping us sustain the love and support
Kell needed, where we could be clearheaded and strong enough to go out into the world. They were so, uh, un unfailingly there for us that it got us down to the, you know, down the road. And we're of course, 100%, um, port of the, of the ultimate plan that came to be in 2016, which is where would we go if we could Colorado one, one out?
Pretty, pretty clearly.
So what services, what services were you like? Oh, Colorado has these services for Kell and that's gonna make a difference. What, were those that brought?
You? Well, the the first thing that I noticed was the school, just the way the schools were structured. Um, we were coming from a rural area with, um, an elementary school with one special education classroom where you had several disabilities in one classroom with one teacher and one paraprofessional. We, loved the people. The people were, were great. Yeah. They gave their.
I will say that, but, um, you know, it, it was, um, just.
You know,, I noticed the difference in the way that Colorado schools were structured. And, and I just, you know, as a teacher, I am a teacher. And when I started going through the websites and the Boulder Valley School District, you know, the structure, I was amazed at how they did it. They had just one ILC intensive Learning center that had all of the children with autism in it. So you had one classroom with two teachers and like ten paraprofessionals. So that kids had one-on-one or or one-to-one support. And Kell needed that all day long mm-hmm.
<Affirmative>. And it was just very well structured, very nicely set up and with.
Right. I noticed that immediately his teacher at Heatherwood Elementary in Boulder, she was the first one that expected him to do anything to actually, like, you know, the school had been challenge him. The school had been, Well, I'll go here and maybe I'll color a sheet, or maybe I'll participate in a song. But his teacher at HEATHERWOOD really said, No, you're gonna, this is what you're gonna do. Yeah. You can do this. And he learned to meet those expectations. And so that was a, that was a very quick benefit. Right, Yeah. For him. Um, and then also just some of the therapies that we had heard about through the years as Kell was a child.
Cause we always looked at the alternative route. We always took the alternative route, and we had heard of cranialsacral therapy but never dreamed that we could find it <laugh>. It was so hard to find where we were. And, uh, it was, so it was cranialsacral. What else.
About, Well, you have the Imagine Waiver Program in the state of Colorado, and it's actually funded where there's an Imagine Waiver program in every state.
It's a state waiver,
Right. There's a state waiver, for children with Kell's conditions all over the place. But, you know, Colorado is one of the best we found that was funded and, and had the infrastructure and had people who would answer the phone and call, you know, case.
And, well, his waiver immediately kicked in as soon as he qualified, the money was available to us for whatever therapies he needed. They have the same waiver in Louisiana, but there's a waitlist, and then by the time you're granted it, you, you've aged out of it.
The kid might be 25.
Years old. And so it kind of doesn't even really exist. It's there, but it doesn't ever work the way it's supposed to work. So that was also a very nice surprise. Um, and just a lot of in-home therapies that, you know, I didn't know that people like you could have in-home therapy,
Ots and PTs,.
And yeah. We did a lot of, um, and a lot of in-home therapy with him. A lot of ABA, a lot of speech, you know, OT. Yeah. The traditional stuff that most people do with Kell. We, we've done it all, but it was just a little more structured here, a little more, a little, um, more planned out, well thought out. Mm-hmm. <affirmative> is, is the way that I would describe it. Yeah. When we landed here, I thought, this is, this is exactly where we need to be.
So you saw lots of progress, and I love that there were expectations put on him because, you know, when, when people have expectations of us, we kind of try to live up to them, you know? So I think that's such a good thing that your teachers were doing it immediately. So, you saw him grow, but then something changed. You, decided to try something new. What, how did that come about with the speech?
I wanna say when, um, when Covid started and the pandemic, you know, we, we were all shut down. We stopped all of the in-home therapy, we stopped all of the therapy, and it was kind of a nice break for us, but it was also kind of a time to just reflect on, you know, where do we wanna go? What are we gonna do? What's working and what's not working? Because we were kind of just doing everything mm-hmm. <affirmative> and not a lot was sticking; not a lot was changing, not a lot was working. And so, you know, you kind of get to a point with, with, uh, you know, a child with autism as they reach, you know, teenagehood or whatever you wanna call it, um, you know, kelp turned 15.
And we're kind of starting to think about, well, you know, we have to look at after high school, what are we gonna do? What's feasible, what.
Continuing education programs.
Yeah. Adult services. Adult services. And, you know, we we're looking at trusts and, you know, all of these things that you don't really wanna think about. You know, you, you, you've.
Not had to think about.
All these years. We, we could put this off. You know, you have your child diagnosed, and then you, you hope for the best. And then you try everything and you try everything, and you hope, and hope and hope, that something clicks and something works. And for some people, it does. But for us, it, it didn't. And for a lot of people, it doesn't click, and you kind of get to the, to the point where they're 15, 16, 17 years old, and you start to think, Well, we gave it a good shot, and this is it. This is what it's gonna be. So now we have to figure out how are we gonna make his life happy. How can he live, you know, his happiest life? What can he do that's productive so that he can, you know, produce something, be part of the community?
What does that look like?
So while we're contemplating all of these things, just, that's when the amazing part started <laugh>. So I, okay, one, you know, cold March night, I was, you know, in our kitchen, and I was checking my email, and I have an AOL account still, and I know that's funny. No one has an AOL account, but for some reason, I still have my AOL account, and I don't check it all the time. For some reason, I checked it that night, and I had a bunch of junk, like it was just all, you know, spam, but something caught my eye. And it was a name of a man who wrote a book, and it, he was, you know, promoting his book.
And I caught, I caught the name, and I was like, Who, who is this guy? And so I, I opened it, and I had to think for a minute, and it was a, it was a dad.
It was a dad whose child whose son had autism or has autism. And I remember him from our early days of dealing with autism. He ran a website, and I stumbled across that. His son sounded just like ke like he was a couple of years older than Kell. But everything that this boy went through was kind of what, you know, Kelll had the same symptoms, all of the same everything. And so I followed this, this dad and this son, for a while. And then as Kell got older, and we, you know, moved on a little bit, I kind of stopped following him, but this was, this is who this was mm-hmm.
<Affirmative>. And so I clicked on the the, uh, the email opened it up, and he had written a book about his son and his son's breakthrough with communication. So I'm not thinking about it.
I just kind of ordered it. Mm-hmm. <affirmative>, it wasn't out yet. And I just, you know, I wanna support him. Right. This is a dad, <laugh>, his son is now following him for 10 years. Yeah. His son is now 18, and they've had a breakthrough. That's great. I'm gonna support him. So I bought the book mm-hmm. <affirmative>. And then, you know, it didn't come in until like, you know, a couple of months later or a couple of weeks later. Again, I just kind of set it aside and forgot about it. Until Luke, our middle son, you know, comes strolling Stitch, comes strolling through the kitchen and says, Hey, what's that? It picks up the book. I said, Oh, this is about a boy who has autism that started communicating. He's like, Can I read it?
And I was like, I guess so. Yeah, sure. So he took it upstairs.
A little while later, he comes down, and he says, Mom, you have got to read this book. Wow. I said, Really? And he said, Yes. He said, The boy in this book is just like Kell and he is spelling; he is saying his sentences using a speller. And he is talking, he's talking to his parents, he's talking to everybody, and he can do all of these things. And I was like, That's great. I was like, Wow, that's great, Luke. He said, I'm serious; you need to read this. And I said, Okay. So he put it down, and so he put it down. And, you know, a couple of days later, I picked it up, and I started reading it, and I couldn't put it down.
And it was, it was like reading our own story. I didn't tell Frank that I was reading it because, at that point, we had kind of given up, You know, you, you tried so many things, and you can only hope for so long.
And with each new therapy or each new possible solution that you're, you're, you're presented with, there's that rush of hope, and then there's that defeat when it doesn't, it doesn't work, and you have to let it go. And so I didn't, I didn't wanna give, I didn't wanna put him through that without unnecessarily. So I kept this to myself, and I started reading it mm-hmm. <affirmative>, and I couldn't put it down. And I cried, and I cried, and I cried the whole book. And finally, he said, You have to tell me what you're reading. Like, what is wrong, <laugh>. And so I told him, and he said, Okay,
Parents of autism know what we're talking about. Mm-hmm. <affirmative> in that there are many times when you've heard of a silver bullet for someone, for someone's child, you've heard a breakthrough. Uh, the name of the book, by the way, is an Autism Miracle.
It's called, um, Underestimated.
Yes. Underestimated an Autism Miracle.
Yeah. Underestimated is the name of the.
Book. Parents of Autism will tend, after a while, there's a battle fatigue that causes you not to react to things that seem hopeful because you've tried so many things. And, to her point about having hope, feeling the.
Defeat. Well, I say that hope can be devastating. Correct. Because you don't even wanna hold onto the hope,
Because Right. You don't wanna begin to entertain something. You're.
Right. You've been through so many letdowns. And so to her point about withholding initially, what really was going on, because I think she was still absorbing, that was the fir, one of the first things she said is, this is a book about a boy that I think is, is just like hell mm-hmm. <affirmative>. So that, that was a line that did get my attention because we've never really said that about anybody else. There were lots of other kids with, you know, similar conditions, similar symptoms. But, but to, to, for, for my wife to say, I'm reading a book in a story about a boy who's just like our kid.
That was like the first time we, I'd ever thought of being able to relate mm-hmm. <affirmative> to our situation, to someone else. So, again, the suppression of hope becomes a survival mechanism. And so you say, Okay, you know if something comes of it, let me know. Right.
But, that's where the importance of her mother bears motherhood feature of this, it becomes so powerful in the story is she finished the book mm-hmm. <affirmative>. And she was still able to overcome that coping mechanism of not getting excited. And for probably two weeks, there was this just total emotional whirlwind that was going on with her because, something she knew was real about this.
Mm. And it was like this little, you know, you, you kill that pesky weed with the Roundup, and it keeps growing back <laugh> this time. Then, the little weed was growing up. And, and she was kind of looking at it and noticing there might even be a little flower on it, and then it might be too pretty to, to, uh, cut, to cut back again. Yeah. So I would say she jumped in with both feet within, you know, seven to 10 days or so. Like, we gotta figure.
Out more to get to the, um, to the fun part of the story. Um, I finished the book and major credit to the dad that wrote the book, because at the end he said, If you're interested in this method for your child, here's what you do. So he gave me the directions to go ahead and get it going. So he gave instructions of what to do. And so immediately I've said, I told Frank, I said, I'm gonna do this. And he said, Okay. And so <laugh>, I started looking, I contacted the method that, um, that is called S2C spell to communicate. So the word spell the letter two, and the word communicate.
And there is a therapy center in Virginia. And the founder of this program runs that therapy center. It's called Growing Kids Therapy. I contacted them, and they put me in touch with a, an s S2C practitioner.
Um, now what's really interesting is that, uh, s S2C is very, is very new, and it's a very, you know, there's not, there's not, it's not very popular yet. So you have practitioners kind of scattered, and there's not enough of them yet. Um, there's a lot, there's a few on, there's a lot on the West Coast, there's a lot on the East Coast, but there's only like one <laugh> in between. And he's in Denver, or actually, you know, in Littleton. And so she put me in touch with him. I called him, We had a meeting with him. And within, you know, I wanna say probably four to five weeks of finishing the book, he was at our house evaluating Kell to see if the program, if he thought the program would work with Kell.
What are some of the criteria that, that they look for to see if this would work.
Uh, apraxia, A lot of these children haveapraxia, and I don't know what the actual definition is, but it has to do with producing sound-producing words. And that's to do with Yeah. Muscle coordination. Yeah.
Motor control protection for speech. Also, bypassing oral speech by, you know, spelling and spelling as a means to create language requires, in this case, the ability to select definitively one letter at a time and sequence to produce.
Words. So there's a lot of, um, the, the the evaluation focused heavily on motor control, on, um, cal's fine motor skills, hand-eye coordination, and how he, you.
Know, to be able to follow some simple directions, Right? And things like.
That. Fun for Kell, he did really well. You know, um, experience with Kell with any new evaluation, new person, new therapist, um, he's always kind of silly. He doesn't wanna pay attention. And you think it's all just falling apart because he's just like running around.
I'm seeming to care,
And and he doesn't care. Like just does, just does whatever he wants. But no, Nolan is the name of, was the name of his practitioner. And Nolan, um, you know, got through the evaluation. He.
Saw through all of that.
And he told me at the end of it, he said, um, I don't remember if it was, I don't think it was that day. I think it was our follow up meeting. He said, I, I'm, I'm seeing what I need to see. I, I what I'm, what I'm saying in him, I've seen in other children who have been successful on this program. So I do think it's a good fit. And I said, Okay. I don't know what he saw, but okay, that was enough for me. Um, and so we, we began, um, actually at that point, we left, we go home to Louisiana for six weeks every summer. So at right after the evaluation, we went to Louisiana for six weeks with the promise to start S 2 C sessions when we got back mm-hmm.
<Affirmative>. And so we did that. And I'll tell you what changed in that, in that time for me, um, after Kell's evaluation and after our meeting with Nolan. He told us that Kel was a good candidate for it, I began to think a think about Kell differently and think about what he understood and what he could see around him and what he knew.
Because the whole premise behind S2C is that we presume confidence. You know, we presume that these kids know what we're talking about. We know, we presume that they understand the world around them, and that they're way smarter than we all think they are. Mm-hmm. <affirmative>. Um, and so when I saw it, when Nolan evaluated Kell he talked to Kell in a way that no one has ever talked to. Kell he, the first thing he said to Kell was, you know, and I'm paraphrasing here, he said something along the lines of, you know, Hey, Kell, I, I hear you're really smart. I, I know that you have trouble getting some of those, some, I know you have trouble getting your words out, but I, I know that it, I know they're in there, and I'm gonna, I'm gonna help you get them out.
I'm gonna show you a little, Right.
Yeah. I'm gonna show you how to do that. And when he said that, I was like, <laugh>, okay. He's not even looking at you <laugh> like he doesn't understand what you're saying. But, um, you know, I had read the book and I was, you know, I trusted the person that wrote the book underestimated, because I had, you know, I knew him from the past through his website, not personally. So I was like, Okay, well let's stick with this. Let's see what happens. And so, but, you know, but from the time of the evaluation to the time we started sessions, I started talking to Kel differently. I started assuming that what Nolan was telling me was true.
And I started talking to him more. You know, he was 15 at the time, Started talking to him more like a 15 year old than a five year old.
Cause that's how most people want to talk to him. Mm-hmm. <affirmative>. Um, and I saw him react. I saw him appreciate it. And I, you know, I saw, and when I say react, I just mean that everything started to be a little softer for him. You know, Kell was an aggressive child before all of this started very aggressive. We had the self injury injurious behavior. We had the property damage. Um, you know, we had the phone calls from the school; hey, Kell having a bad day. You need to come to get him. Um, you know, the night waking, the staying awake all night, just the, and just, just the tantrums for, for no apparent reason, just the tantrums.
You know, he's punched holes in our walls; he's hit me. You know, just, um, there's all, all of those behaviors were there mm-hmm. <affirmative>. And so I noticed as I started talking to him a little differently, and you know, Nolan says he's gonna help you learn to spell.
He's gonna help you learn how to get those words out. He kinda responded to that. And I started to see a softening, you know, during that time. And so when we came back, we started sessions with Nolan, and it was once a week for like 45 minutes, and it looked like Nolan coming to our house, reading to Kell reading a passage out loud to Kell age appropriate. So, like, one of the things that they read about was the, um, the USA Gymnastics team. Mm. I think that was happening at that time.
I think it was the Summer Olympics. There was a reason, but and it was a pretty long passage. And he was reading it to Kell and I'm thinking, Kell's, doesn't know what he's saying. Like, he doesn't know this. And after the passage, Nolan, you know, pulled out a stencil letter, stencil board, and it was broken into three parts.
The stencil there were three stencil boards, and the first one had letters A through G. The second one had letters N through P. And then, like the third ones, um, had like s's it's broken up, the alphabet broken up. Yeah. And so he would, after he would read the passage to tell, he would start asking comprehension questions. It, they were easy questions, straight details, one-word answers from the story. And Kell would take a pencil, and he would poke through the letter on the stencil board Wow.
To spell the answer. And Nolan is not touching his hand. No one's touching his hand. Mm-hmm. <affirmative> and Nolan's not telling him what letter to touch. So if the answer is jump, right. So Nolan knows the answer is jump. He puts the letter board in front of Kell finds the letter J, Right? Mm-hmm. <affirmative>. And then Nolan switches the letter board to, to you. And Kell finds the letter you. So I, you know, I'm watching all this happen, and you know, it's, it's interesting because I'm watching it, and I do not believe it's happening.
Yeah. Must be amazing. Like, Oh my goodness. First of all, did you even know he could spell?
No, no, no, no, no. <laugh> not even, not a clue. <laugh>.
Um, yeah. So, so I'm watching this. I'm not believing this, and I'm thinking, this is crazy. There's, this is some kind of like, I'm from Louisiana, right? I'm like, this is a voodoo trick. Like, there's something going on here that I don't see, and I, but I'm gonna watch it and I'm gonna figure out what he's doing over there to make Kell spell these words. But the thing is that Kell kept getting better at it and getting better at it. And I had to also work with him at night. So, you know, Nolan was coaching me like, You need to be doing this with him too. And so every night, and I'm not believing what I'm seeing, even though I'm seeing it happen in front of me, I'm still not believing it overwhelming.
And, you know, I, you're not sure if it's actually working or if there's something different, you know, something that you're doing to affect it. And so I'm trying really hard to trick him, like give him hard questions that, you know what I mean? Like, I'm trying test. Yeah. I'm trying to test it. Cuz I don't believe this is happening in front.
Of him, but yet you're giving him the questions and he is actually spelling things out, like you're there doing it with him. So, you know, it's not a trick anymore, <laugh>. Right. But you're exactly.
Right. So as I started working with him, I started believing it, and I started saying, Well, I'm, you know, I'm trying to trick him, but it's, I'm not tricking him. Like he's still getting the answers. Right.
And so, um, yeah. So it was, uh, it was crazy. Um,.
So what, what's your feeling, both of you as parents? What's your feeling now seeing him answer questions, be able to spell? Like, what, what is that feeling like? Well,.
It's hard to describe. We'll try <laugh>. It's, it's been a, it's been a, um, an overwhelming year in many ways. And so, Okay. So yeah, we, um, he Kell became conversational. So there are different levels to this program. And, at that time, we were working on just straight answer question and answer, question and answer. He's learning how to spell. And Nolan is telling me he can understand these passages. Don't, you know, don't give him something lower than you think he needs. He, he is age appropriate. He is cognitively a 15-year-old read to him, 15-year-old material.
And I was like, Okay, okay. And so I did it. And, um, and he did, he still got the answers right. Um, but then, you know, it, something happened and, you know, kids move through the program in different, at different times, different levels.
They all do it at different, with different speeds, timing and speeds. Mm-hmm. <affirmative>, um, Kell exactly, almost exactly a year ago, Halloween night last year, um, we were, you know, Kell didn't wanna go outside to trick or treat. Luke wanted to go. So Frank and Luke went, and I sat down with Ke,ll and I did his lesson. And after we did the lesson, he didn't, he, he kinda hung around. Like, usually when we did a lesson, he would, we would do it. He would get up and run away. Like, That's it, I'm done. And you'd go away. And so that night, he kind of hung around.
He didn't; he didn't get up. And I was like, Do you, do you wanna do more? Like, do you wanna do more of this? And, of course, he doesn't answer me, but I don't have any material in front of me.
There's nothing else I can do. Right. I'm like, so I'm looking around like, what am I gonna do? I don't have anything in front. I'll have a story in front of me. I don't know what to do. And so I just decided to try to ask him a question and see what he does mm-hmm. <affirmative>. And so I said, Kell do you know, what, what holiday? What are we celebrating today? And so I put the letter board in front of him, and he starts spelling the word Halloween. So that was the first question that I asked him that did not have, I didn't supply, not that I was supplying answers, but we didn't read it in something, you know, we didn't read a passage about Halloween.
And then he answered, answered a question about Halloween. Right. I just said, What are we doing today? And he said, Halloween, mm-hmm. <affirmative>. And I said, Okay. I said, So what do we do on Halloween? What do we when we go up and down the street, what do we do? And he said, He spelled trick or treat. Wow. And I, Oh my gosh. I like, Right. Then I'm, I mean, it's, it's hard for me to breathe at that point because, Because.
You're having a conversation for the first time with your.
Kid. Exactly. Yeah. These are his first words. And I'm, it, and it's, it's almost like a voice entered the room when this happened. It was so small and so tiny at the time, but it was definitely a voice. And we went on and he said, um, you know, sort.
Questions about family. He started answering questions about family. You know, we're told that these kids don't understand relationships and they don't, they don't know who people are and they don't have.
Any of that stuff. Right. They don't know any of that stuff. That's all wrong. It's all false. I started asking him questions, you know, more questions. I said, Hell, do you know who my mom is? And he said, Nana, he spelled Nana. And I thought, Oh my gosh. She, he knows her name. Like he knows Yeah.
Which then is so unraveled, like he know, knows everybody,
You know? Right. And I said, Do you know who is is my sister? No. Who is, who is Nana's husband? Wow. And I thought, you know, there's no way he's gonna get this. That's a relationship husband. He doesn't know what that is. And he spelled my dad's name. Wow. Which is a long, is a long part that I was my dad's. That's what they call him the nickname. Um, and so he spelled that. I said, Do you know, you know who's sister? And he said, Aunt Emily. So he starts naming all of these people. And the last question that I asked him before I completely fell apart was, um, Do you know who Nana's mom is?
And he said, Mama, he spelled the word Momo. That's what I call my grandmother. Well, she's passed away. She passed away when Kell was 11. Right. When we moved here, she passed away. And Wow. I said, I said, Kell, I said, And, and she loved him. She loved him so much, and he big champion. Yeah. Loved him. He loved her; he loved her. Um, and I said, Do you know where Mama is now? And he spelled heaven. Wow.
And at that point, I <laugh> lost it. Right. I lost it. So I start hugging him, kissing him. He's laughing at, you know, laughing like, This is great. This is hilarious. And you know, it all kind of ends right there. But that was the first; that was the night that it all changed for us because Kell became conversational. And so.
He exhibited prior No Knowledge, which is a major, which is a major goal in the program to get kids to be.
Able to communicate. It's a hurdle. It is a level. Um, and so, you know, to answer that question, how does it feel? It felt like the world shifted, honestly. It, it felt like the room moved. It was earth-shattering, not shattering, but shifting to us <laugh> that night, everything changed. Um, we started talking every night, you know, finding out what he knows, what he wanted to know, what.
He likes, what he doesn't like.
Yeah. What's your favorite color.
Um, yeah. He had a major breakthrough that night.
Yeah. Like he was 15 at this point, right?
Yes. Was 15.
So you're starting actually for the first time to really get to know your son at 15 because before, you just assumed everything. Right. And now he's really.
Right. Well, we assumed that Kell was very basic, that Kell had needs and Kell had, wants he was mad because he was hungry, and he was mad because he was tired. Um, but that's not the case. It was rarely ever about needs and wants for him. It was about so much more. But, um, you know, during those weeks when we were going through all of that question and answer and, you know, starting to get to know him, um, I, I tell, I told a few people that it feels, and I think this is on our blog or not our blog, Kell's Blog, Um,.
Yes. Did mention Kell has a blog. So just for listeners, Kell has a blog, right? And it's called Words You've Never Heard Me Say. Is that Correct?
That's right. Words You've Never Heard Me say.com. And he came up with that himself. Oh,, he came up with the title. I told him that he needed to have it, he asked to make a blog to help other non-verbal people. And I said, Well, you need to come up with a title first. We need to find, you know th the domain. And so he thought about it for a day, and then he came back and said, I know what I want. I want it to be words you've never heard me say. And I thought, I was like, That's brilliant. I love it. You're <laugh>. That's perfect.
Um, it was one of many profound statements Yeah. That we, that he has expressed. And, and that honestly, we've met a lot of other spellers since then and, you know, from across the country. And they, uh, these are some of the most profound individuals.
On the planet. So let me finish what I was saying though, cuz I said, um, after this all started, you know, I wanted to run down the street screaming. This was so huge. You know, I had accepted that Kell was not going to talk to me in this lifetime. You know, this, this, this was not going to happen. And that was just the way it is. And so when, when he started talking to me, the best way that I can describe it, it, it felt like he had been returned to me. Mm. <affirmative> Right? It felt like when we got the diagnosis, when he was little, um, you know, I felt like he was taken from me.
I really did. Like that the child that I had was not there anymore. The, and you know, that's my perception, right? Mm-hmm. <affirmative>. Um, and I feel like when he started talking to me, I felt like he had been returned. Like I had found him after all of these years of all of this, this, this things, all of the stuff that we had tried and all the money, and not that it's about the money, but he was, he, we found him like he's here. He's been here all the time. And it was just mind-blowing to me that that the world was happening around me. And it looked exactly the same, but everything had changed for us.
Ugh. That's beautiful. That's beautiful. I know. It's emotional. It's so big. It's so big. I mean, you have this child that now you, you can actually communicate with, and he can actually tell you all the things. The reason he is probably so brilliant, honestly, is that he's been observing for 15 years. Everybody moves. Right. And just taking it all in until this moment when he can actually now express himself.
And we still feel like we're just, we're still just, every day is some great new thing that he may say or think about or observe. And we haven't even begun to talk about the heart that he has for no man or or woman left behind. You know, he has said he wants to make sure that everyone finds out about this. Cause he thanked us specifically. He thanked Jaime one of the early, early nights, um, by saying, Thank you for saving me from a life of silence.
And, and he indicated and has repeatedly indicated, uh, and has been confirmed by other spellers who ha, who've been able to communicate about their breakthroughs. The same feeling applies. They all feel like they have been let out of jail. And they have all been there all along, observing. They, uh, they all want to show how much they know and how much they have to offer. And they all, every, every single person that I have met, every speller I have met is again, some of the most loving, grateful, not bitter, um, profound speakers, thinkers, thinkers, <laugh>, um, that, that we've ever met.
And, and, and we must mention also that we connected with an incredible group out of Fort Collins, um, called Keys for Autism. Have to give them great credit because they're, they're, they represent a community of spellers ranging in age from maybe 12 years old to 38, you know, 40 years old. And I will, also like to point out that this is, as much as this is important about nonverbal, uh, autism diagnosis, there are many, many people with different diagnoses and even partial speech who can augment and increase their ability to express themselves through spelling.
So if you've got a genetic disorder if you've got downs if you've got, you know, a, a myriad of these other,
If nonverbal is part of your diagnosis.
Or, or, or, uh, restricted speech or, um.
Um, nonverbal or unreliable speech,
Unreliable speech. So we just wanted to make sure the audience understands that we invite everybody to take a look at it regardless of your diagnosis. We met, a boy in Atlanta, and that's another great thing. Why we love doing these kinds of things is the doors keep opening, and people keep being put into our path that need to hear this. And we met over the last summer, went and visited some family, of mine in Atlanta, and we connected with some, uh, parents with a, a 12-year-old. And, um, you know, he had some, literally missing a chromosome.
But this, this child was completely there. He couldn't communicate verbally because he had some malformation of the, of the, you know, the mouth area and the throat and the tongue and the teeth. And he, you know, he wasn't able to use his voice. But here, his parents were talking about, Oh, he can find his way around an iPad. Mm-hmm. <affirmative>, it's like, you know, he can, he can move through apps, he can change things, he can move things. And it's like,
Yeah. Those are all signs of, um, competency.
That's right. And intelligence. And the idea that we're treating these kids as if they have an intellectual disability, simply cuz we don't have a way to evaluate their knowledge, is, is the tragedy of it all. And that's what Kell’s motivation he says, Well, gosh, if I can spell and I can show the world how smart I am and all that I have to offer, how could we let a, a single person on this planet suffer a fate without that hope and without that possibility?
And so, you know, we're, we invite anyone to research this, disregard any of the, you know, potential, you know, negativity of people. There are people out there say, Oh, you know, this isn't a completely independent form of communication, and this is too, you know, too much of a risk that other people can influence these spellers. Not the way that, that the underestimated explanation was. And, again, Kelly's completely free and independent. No one touches him. No one. Mm-hmm. <affirmative> what to do.
It all comes from him. Right.
Right. And this is different than, I think there's another technique I think that you're kind of talking about a Yeah.
It's called Rapid Prompting Method, Uhhuh. And that's kind of the one that everyone when they see us and they Google see, they see this and they say, Oh, no, no, no. That's been, that's been, um, debunked. Right? Yeah. Um, and, and that's not what this is; this is different from that. Um, you know, no one, no one touches Kell, No one guides Kell.
I kind of liken it to the, to the well wands that the old guys used to use to find water. Have you ever seen those, you know, that bend in their hands as they walk over a certain area of ground? Maybe some of your listeners are familiar with that, but Yeah, it's, if they call it, I think it's a witching wand or something like that, and it basically detects water underground. It's kind of like that where when you see your child doing it mm-hmm. <affirmative>, you will not care what anybody else thinks. <laugh>, you will know. You will know that it is your child's voice. You will see them doing it.
And it's, and, and only a parent can tell in the beginning. Now fortunately for Kell, he's become so proficient that, that people in other places around him that may have had, you know, some, a bit of doubt about, you know, you know, are these really his words? Is he really this verbal? Cause, you know, we're not seeing that that is even beginning to melt away as his confidence and strength and certainty.
With also, um, you know, you, you, we started with those three letter boards, those three stencil letter boards, and then we moved to one letter board that had all 24 letters on it. And then we moved to a, to a, um, a laminate board where it's like a piece of card stock with the, with the letters, all 26 letters on it, laminated. And he would point to the letters mm-hmm. <affirmative>. And then from that, we moved to a wireless keyboard, and he did that. And then now we're on an iPad, He's on an iPad with a, um, text-to-talk app. And so he types the word, and it says it for him.
Mm-Hmm. <affirmative>, um, you know, that was huge for him when he knew, when he knew the end result. When he when said, You can get an iPad, and it will talk, it will say your words for you.
That was all he had on his mind for a while until we got there. That's all he wanted. And when the first, the first time he used it and his words came out, like, at from a device mm-hmm. <affirmative>, it was heaven to him, it was with bliss, it was the best thing to see. Um, so there are levels that you move through, you know? Mm-hmm. <affirmative>, beginner all the way, and, and every child is different. Yeah. Um, and Kell's, you know, we're still working on even more independence with Kell, so he's not, you know, completely through; we're not finished, but, um, know, it, it, it, the, the content, the thoughts and the feelings, all of those things are inside.
It's just the spelling. It is the, is the getting out.
And that can be intensely emotional. It can, you know, he can be,
Yeah. There are some things.
Happy he can be sad about. You know, just sometimes he'll just get super overwhelmed, happy because he's able to communicate is something as simple as how he really prefers a particular kind of pants. And the other ones bother him. Just being able to avoid those.
Well, he told me the other day he came home from school, and I said, How was your day? And he said It was great. And I said, Well, that's wonderful. He said I wanna tell you something that happened today. Mm. And I said, Okay. I said, Well, tell me. And so, as he's like typing what happened, he starts tearing up. And I was like, Oh my gosh, what happened <laugh>, what happened? And so he said, You know, I went to PE, and I played dodgeball. And I said That's great. I said, But did something happen? Why are you crying? Are you upset? And he said, I'm just so happy we can talk. Oh yeah. I said I know. I said, Isn't it just? I said, It's the best Kell, it's the best thing in the world.
It's just the best. Me too. I'm so happy that we can talk. So you just think about the years of him coming home from school and wanting to tell me something and not being able to, and watching his brothers be able to tell me something and he is not able to. Mm-hmm. <affirmative>, you know, there's, you, you go back through all of those things, and you realize, gosh, you know, he was there the whole time. Um, it's, it's heartbreaking. It's very; it's heartbreaking. I just wish we had known about this years ago. Years.
Ago. Yeah. I believe if you look back over all of the steps that it took on the journey that we, that we've been on, that really Kell needed to go through all the things that he went through to get to the point where he was ready. Because in the beginning, he told us after he could start to spell that before spelling, I didn't care about anything. And he had the difference between the time when life. Yeah. What differences really thing make no one's listen. You know, can't say anything to anybody anyway,.
You have to go before that. Because he, you know, throughout all of this, all of the talking, we found out that he kind of thought when he was younger that his voice was gonna start working at some point. He thought that, you know, he watched people around him, people his age talking, and he watched his brother start to talk. And he thought that at some point his was, his voice was gonna work. And then he tells us that around the age of nine, he realized it wasn't gonna work. And that, from that point on it is interesting. That's when his tantrums started. That's when he started when his behavior issues really ramp up; you know,, he realized that his voice wasn't working, and that's when the behavior started.
Um, and then from that point on, he said he didn't care about therapy. And if a therapist if he met a new therapist, he,
He didn't; he'd mess with him intentionally.
He would just, you know, pull around, try to get in trouble. I remember that with Kell at one point. You've been there, you know, you've seen, you, you were that therapist <laugh>. So he said he would just mess with people because it didn't matter. You know, it doesn't matter. Mm-hmm. <affirmative>. Um, but, you know, to think about a child having to cope with that without having to anyone to talk to about, like, I couldn't help him. You know, he's, he's going through these major emotional things like, my voice isn't gonna work. You know, it's where his brain is functioning fine, but his voice isn't working.
And, you know, I just think back on those things, and it just, it breaks your heart just to think about a child having to deal with that silently. Oh, yeah. You know what I mean? Like, and so I, I forgive everything <laugh>, I forgive all of it. Yeah. Um, yeah. I'm just so thankful now that we Well, and he was communicating the only way he could, you know? Yeah, exactly. If you had something going on and you couldn't say it, wouldn't you put a hole in the wall if people were talking to you like you were a baby and you were 13 years
old and misunderstanding, you know, what, what was really bothering you? And, and it is important to note according to Kell that the vast majority of his behavioral issues were directly related to his inability to communicate. So I, I would encourage any parent listening that tomorrow morning or whenever you see your child next, try changing a little bit about the way you, uh, talk to them or, or look at them or treat them or think of them, uh, as if everything that comes out of your mouth is absolutely 100% understood and realize that the, the child that maybe badly behaved is not wired that way.
Yeah. That, that the he or she is not just that way, because that's just the condition. And we found before spelling, we would've sworn up and down, you know, Kell's just an aggressive child. He's an angry child,.
He's this, And we were told that's the progression. We, you know, we were just, we were seeing what we were saying, and it's what we were told we were gonna see. And so we just accepted it as.
<Affirmative>, the, this is just a part of process, this is it. But, but Kell's greatest contribution to, to us so far for understanding where he came from. And for all children who are going through this, is much of our anger, frustration, crying, and, you know, general malaise. It's because we can't communicate. It's not because we just feel that way. It's not because we just wanna be that way. It's just because we've gotten so sick of it that this is, this is about all we really can do.
Yeah. And, and it, it just made so much sense to us that, and, and, of course, now we've actually been able to see it. There's a track record now where his, his behavior, he's just happier. He's, he's more interested. His.
Their behavior is he, he doesn't hit, he doesn't put holes in the wall anymore. We haven't had to go pick him up from school. He's actually doing fantastic in school. Um, you know, he doesn't wake up in the middle of the night and throw tantrums anymore. He's just not an angry person anymore.
Because he knows he's, he is, he's no longer misunderstood. And he knows whatever's bothering him, we can address it. And it just gives him a sense of calm that, I mean, I just,
I have help now. Yeah. I can; someone can help,
Help me. That's, I'm not gonna freak out about this because I know now that whatever's bothering me, I can express it. And.
So his behaviors about it, his behaviors have reduced greatly. Yeah. Now he still has a stem. He says that he started stemming from coping with, with not having a voice, you know, to cope with the anxiousness and the the, um, the anger.
Because stemming feels good, any parent, any parent with autism in, in the, in the family, knows and can confirm that, you know, a stimming child is gonna go off in the corner of the room, and if they're still in quiet because they're flapping a piece of paper or bouncing a ball, then you know, that that's the only piece we, we we've ever known typically. And so the the behavior continues; the child kind of gets lost in, in the good feeling. Brain chemistry happens from stemming. And parents, you know, can doze off for two and a half minutes.
Yeah. Uh, and, you know, catch up. But that's decreasing as well because, again, he's not having that need and drive to stem as nearly as much because mm-hmm. <affirmative>, the whole world is more open and interesting to him and more accessible.
Well, can we talk about what he's doing now? Like, um mm-hmm. <affirmative>, just what he's doing. We, learned that he could read. So, we no longer have to read to him, although he does enjoy being read to mm-hmm. <affirmative>. Um, he can read, he can read a, a, he's a grade level for sure. Definitely grade level. But I also believe above he enjoys science. He loves watching science documentaries, he loves studying posters and diagrams and, you know, knows all the systems of the body and how they function. Wow. Um, he knows math and, um, is interested in physics and biology.
Yep. He loves all of this. Um, you know, when he started showing me that he knew his multiplication tables, I was like, How in the world, how, how do you know this? And he's like, I don't know. And then I think back, and I think, Well, you know, our middle son, Luke, we had multiplication facts posted all over the kitchen when Luke was learning his multiplication facts.
And yeah, I really believe Kell picked it up then because it's just, Yeah. You know, it was there. Um, so I believe he's learned a lot of stuff just by being around it and hearing it and seeing it. And he, you know, he loves, loves to talk politics. He loves to talk, um, about what's going on in America. He's very patriotic, for somehow he's very patriotic. America loves to talk about America, and loves history. He just wants to learn. And he says that all I want to do is learn So, you know, he, where he is now, is just, is, it's amazing.
It's a wide open generation, absolutely amazing. And it makes me s shutter, you know, what would've happened had we stayed in Louisiana, where would he be right now? What would we be doing? And it makes me cringe because I know he wouldn't be where he is right now. Oh. I mean, we came here looking for this, and we found it. Yeah.
So and, that is the limit. I mean, like, who knows where this will go?
Well, right now, Kell is undergoing a, um, complete Eva reevaluation with the neuropsychologist in Denver where, um, you know, and Kell is saying, I'm not debating autism. I have autism, and I'm okay with that. He said, But the other stuff, you know, he's like, I don't have an intellectual disability. So we're, we drop, we're, we're getting that dropped. And so he's going through our reevaluation right now. We're doing IQ testing and all of these things, general cognitive tests, testing, um, just trying to get a new baseline for him so that we know mm-hmm. <affirmative>, you know, where, where can we start in school.
He needs to take regular high school classes. Mm-hmm. <affirmative>. Um, and so we're trying to just set a baseline for what you know, where he is right now. Um, and so it's all very exciting. You know, a year ago we were not thinking about these things, and now it's like a giant present that we've opened this year. And, you know, we have him and, and he's, he's just doing fantastic, and he's so happy. Of course, we're just over the moon. Well,.
Yes. I mean, this story is incredible. It's incredible. And, you know, you hear these things, um, or you read about 'em, but like to know you guys personally and, and have met Kell, it's just so exciting. It really is.
Well, thank you. Yeah. It's, it's fun to tell. It's a fun story to tell. Never thought. We never thought we would be telling this story,
<Laugh>. I know. Now Kell though, wants to say something, right? He wants does. Does he have something to say to his parents Yes. Or to kids out there that might also have been struggling with, um, just not being verbal?
Yes. So Kell has something that he wants to say to parents of nonverbal children or parents of nonverbal people because, you know, adults.
Nonverbal adults also. So I'm just gonna let him say what, what he wants to say. And, um, I hope it comes through because this is, this is on his device.
Yeah. Let's try it.
I want you to know that we all have a voice. I am so lucky to have people to help me enunciate my emotions. We let wonderful people not be able to lament their plight because they are helpless without a voice. If you have a nonverbal child, you should find an S2C practitioner in the city you live in, and that will change your life. I never imagined I would participate in the podcast, but here I am,
Let's make sure we let others have a chance. What a wonderful world that would be. Question what you've been told before, and try to imagine a world where your child is verbal with you and loving life. I want the world to know we are out here claiming what's right. Ours.
Isn't that fantastic?
Tears? I have tears in my eye. <laugh> all I can think of. Like, ugh, it's so beautiful. And yeah, it's, it's so interesting how like he wants to help others, you know, he's been trapped so long mm-hmm. <affirmative>. And the first thing when he can communicate is to help others.
Yeah. It's, it, it is one of the first things he talked about. And he has identified other people. He somehow says, we, we know. He said I can tell who can spell. He's like, I, I can. He's already told me two people in his class at school that he knows can be spellers.
Wow. He used to be one of these, uh, S2C practitioners, <laugh>, you know, or just, I don't know.
Recruiter for it or something.
No. Well, you know, it's, it's very powerful when you meet a, meet a family with a nonverbal child, and then Kell comes out and talks to them on the device. It's very powerful <laugh>. And that, um, he loves, you know, he loves doing that. Um, so it's his mission. It is his mission. He said I don't wanna leave any No, no man left behind. Let's, let's, let's get this done.
Uh, well Kell if you're listening, I don't know if he's still there, but if you're listening, thanks. Just thank you for everything you're doing and for inspiring so many other people who are in the same situation. And, you know, sorry, we didn't know all that was in you before. I will definitely look at each individual differently going forward.
I think he wants to say something, Lisa.
Sure. Yes, please. Go.
Frank. I, I was gonna add that some, you know, a few of the observations that he's helped us understand is that, um, one of the first things and best things you can do when you see someone different, you know, someone on the spectrum that you almost, you almost have to disregard what their body is doing or saying. That's something he's told us. You know, uh, if he gets nervous and flaps his hands, he's communicated that I don't really wanna flap my hands, but the environment, the stimuli is so much that I have to do it.
Mm-Hmm. <affirmative>, it's, you know, there's so many outward manifestations of, of body movement with children with autism that we, we think of it as just these, you know, sort of wild, you know, spasms and, and there is some of that. Definitely there is some of that. But he, he's indicated that a lot of that is sort of that electrical spillage that comes out physically.
And he says, you know, dis disregard what my body's doing. It has nothing to do with, um, what I want to say or what I want to do. Mm-hmm. <affirmative>. And so I want, I want parents to realize that the diagnosis of autism is broad for a reason, and it's meant to incorporate as many people into something, some kind of group that where you can find answers. And I, I don't, I don't fault the medical establishment for that at all. I totally understand it. And again, even Kell accepts it mm-hmm. <affirmative>. But there's such that we are going to be able to learn about how to interface with these kids and young adults.
Um, because he now can tell us so much more about the why that I think this is gonna be one of the greatest gifts that he has to offer.
All right. Kell here with his, what he wanted to say.
To you. Great Kell Let's hear it.
I am so grateful and just overwhelmed.
Me too. Kell <laugh>. Me too.
And he's gone now.
Yep. Yes. Uh, such a beautiful story. You guys are such a beautiful family. Well, thank you.
We wanna make sure that we include whatever resources we're, we're very much, uh, happy to help support, um, anyone that wants to know more. Um, we'll make sure to, uh, provide you, uh, a good sort of like what to do next sort of thing. But, we highly recommend that you buy the book Underestimated An Autism Miracle by JB Hanley. It's not a long read. If you have anything that stirs inside of you, uh, by reading that, follow it.
My wife did, and she found a key that she refused to, uh, you know, let not open the lock. She just somehow knew. And I, I really trust that moms and dads out there. If you feel something when you read this book or you feel something by listening to this podcast, this is, this is one, one more time. I, we ask of you to, uh, to, to entertain the possibility of hope.
Uh, because even if it just improves your life somewhat, if your child, you know, can just even tell you a few things about what would make them happier or, or draw them closer to the family, it's totally worth it. I happen to think there's a lot more than just, you know, a simple upgrade to basic communication. I think there's a whole person inside all of these kids. Um, and we just wanna make sure that we help anybody out there that here's this and thinks this might be for them. Well, we also must thank you for the work you've done in our lives.
You've been a huge help, and we just have so much respect for you, your talent and your skill.
Oh, well, thank you. But, it's a team approach for sure. <laugh>.
Happy to be on that too.
<Laugh>, uh, well, thank you guys for being on the show, and I'm sure Kell's story will touch so many people's lives. That's what we hope we, we have, we have hope for that.
Thank you for listening to this episode. We know that what works for one person may not work for another, but if you are someone you know who can benefit from Kell's story, please check out the book Underestimated An Autism Miracle by JB Hanley. And please share this episode if you wanna see what Kell's up to visit his blog at words you've never heard me say.com.
Dad and Mom
Frank and Jaime are parents of three boys. They moved to Colorado six years ago in search of a better life for their oldest son, Kell, who has nonverbal autism.