SPEAKER_00 0:37

Good evening, everyone. I'm Dr. Estee Hess. I'm Dr. Estee Kirch. And we are here on another episode of On and Off the Spectrum Podcast with some very, very special guests. We have Mary Heller and her wonderful son. Ryan is here. How would you, Lindsay, how would you characterize your assistance to Ryan?

SPEAKER_03 1:00

Um, I am Ryan's communication partner.

SPEAKER_00 1:03

Very good, his communication partner. And we are here because Mary has actually shared some a remarkable journey for herself and Ryan, where by t by instructing Ryan, again, Mary, you help me if I get it off center, with a letter board, you were able to help him gain language?

SPEAKER_01 1:29

Um, yes. So Ryan was um Ryan has level three autism, and he was in life skills classes his whole 20, you know, all the way through 22 years of age in school.

SPEAKER_00 1:40

I'm gonna interrupt you for just a second because some of our viewership doesn't know the different levels of autism. Can you explain what autism three level is?

SPEAKER_05 1:49

Ego.

SPEAKER_01 1:51

It's actually considered the you know, the the the full the full gamut, the the the the full picture. Very very impacted. Yeah. So um, and he was in life skills classes, which means that um the kids who go into the life skills classes are considered pretty much academically unteachable, and so they decide to just help them build some life skills. Um he was in those, and he has like most of his language is unreliable um and it's minimal. So when he was 23 years old, um I a friend of mine sent me a book called Underestimated an Autism Miracle by J.B. Hanley, and it was about a young man around Ryan's age that had and around Ryan's level of autism, who had discovered, who had discovered um uh who had become unlocked his communication through a method called spelling to communicate. And um I just it just touched something to me where I thought we need to try this for Ryan too. Maybe this could work for Ryan. And I had tried throughout life to have him type and um do some communication, but it didn't really open up. But anyway, I just thought we need to try this. So I took him to the practitioner actually that was in the book, and we saw the very first day that his full intelligence was in there. And in a nutshell, what this system is is they train the speech pathway using the gross motor system because for many guys like Ryan, the the fine motor pathway of speech is broken or very impacted. And so this bypasses the fine motor system altogether, and they literally lay down a new speech pathway through their gross motor system by pointing at letters, you're moving your shoulder. Um, and it's and so it was, I don't know how to tell you, it was pretty unbelievable. The first day um we we saw, she asked him a question, and the question was, who did we fight in the Revolutionary War? And I was in the background going, please no, life skills classes, you know, what are you? You can't ask him something like that. And his mouth said, Magic dragons, as he was pointing to the letters E N G L A N D, England. Whoa, and that was a moment where we his dad and I both like just fell to the floor crying. Um, and so that was it. We were sold. So uh for the for the next year, she she trained me how to work with him. And I went home and him and I sat at the dining room table every day and worked on spelling till we got to the point of fluency, which is where he's at now, which means he's fully open. And given his regulation is in the right place, he can he can communicate fully. And we found out he's brilliant, that he's a beautiful lyricist. He's um he's now in college as a math major, getting A's. This this kid who is deemed unteachable. He has friends, a girlfriend, he's a he's an advocate with a with a pretty hefty resume. His whole life has completely changed. That's one.

SPEAKER_02 4:57

So we are just makes me so I I want to cry because I have myself worked with so many young people who were told that they had there was no future, you might as well send them away, um, whatever awful things.

SPEAKER_05 5:14

And that's never true.

SPEAKER_01 5:18

Yeah, yeah, I know. I mean, I think really the the real story, and it's gonna take people a while to really believe this and come to an understanding of it, is that we got autism wrong. Um, it is not an intellectual disorder, it's a it's a sensory motor disorder. Um, and once we were able to help him um bypass, you know, use his healthier motor system, the gross motor system, uh, he was we were able to un unlock his um tree.

SPEAKER_05 5:46

I need water.

SPEAKER_01 5:49

Um, you know, he the so regulation issues. Yeah, but he can com commu um participate fully in a full view.

SPEAKER_00 6:03

I appreciate that. And I think there was an article, and I'm trying to remember if it was the Wall Street Journal or New York Times, that that most recently began to challenge this concept of spelling as the form of communication for individuals who are who are fully impacted.

SPEAKER_01 6:21

Um yeah, you know, I sadly um you have to follow the money with situations like this. And I'm I'm just going to be blunt. Um there's a lot of money in autism treatment, billions of dollars in um insurance and government funding. Um there's the ABA, applied behavioral analysis, is is um the treatment um de jure and and also um speech. So the American Speech and Hearing Association and the ABA associations are really don't want this to be uh they don't want to share the monopoly they have. And so they're they're um they're hiring lobbyists, they're they're they're just really campaigning against trying to discredit um spelling as real. And we're fighting that battle pretty hard right now. We finally got mass numbers enough where they're truly threatened by us, and that's why the fight, that's why the fight is happening right now. Um and I'm pretty optimistic. I think state by state you to see them do it, you can't unsee it. Ryan's regional center, he holds his own meetings at his own regional center. They can't deny that it's him, and so they do cover spelling for him.

SPEAKER_00 7:36

So it's just um, I think such an invaluable piece of information that gives hope to families because I would imagine that regional center, for those who may not be in California or not be aware, it there are 18 state funding agencies entitled the Regions Regional Center of California has 18 of them. And um and they don't always cover these kinds of different interventions, um but now more and more people are understanding and believing that this is a situation where individuals who are able to spell and communicate are real, it's it is extremely valid, and it's as you put it very aptly, Mary, it's growing. And I I appreciate that. I I I want to make sure that Ryan, you feel comfortable. Would you like to share some thoughts about your experience? You well, first off, let me find out. Ryan, how old are you right now? Lindsay, are you there? Can you I'm sorry to make sure he hears. You're on you're on mute, uh Lindsay.

SPEAKER_03 8:56

I unmuted the iPad, but not the screen, sorry.

SPEAKER_05 8:59

Okay, okay.

SPEAKER_03 9:01

Sorry, I just Brian typed a little message. Okay.

SPEAKER_04 9:06

Nice to meet you both.

SPEAKER_05 9:07

Today, Nina.

SPEAKER_04 9:08

Here is part of my mission to advocate for adequate communication support. Okay, and thank you for having me.

SPEAKER_00 9:20

Thank you. Thank you very, very much, Ryan, for your message.

SPEAKER_02 9:23

Ryan, yes, I really appreciate it. We both appreciate you talking to us.

SPEAKER_00 9:29

Ryan, can you tell us how old are you now? And how old were you when you first started to be able to communicate?

SPEAKER_05 9:38

Twenty seven.

SPEAKER_02 9:41

Now and when you were how old were you when you started using the letterboard?

SPEAKER_05 9:51

I can be supposed to. I said I stay. Can I start over to they can out in Lucy's office room?

SPEAKER_03 10:17

Got it.

SPEAKER_05 10:18

Next word starts with my round my question today. Okay. Today can I ask a question today? Today can I ask a question today and see A was all that C when Ryan has finished his thoughts.

SPEAKER_00 11:17

I'm wondering if you could also show the audience what the letterboard looks like.

SPEAKER_06 14:38

No way.

SPEAKER_05 14:58

Two very hard today. Today, very happy today. Today everybody's very happy today. You got it.

SPEAKER_04 15:21

Surface. My thoughts were present with no way to get to the surface.

SPEAKER_00 15:36

I want to comment on how both thoughtful and laborious the whole thing is and how much effort that Brian is making his and what I'm noticing is that he gets more involved in his thoughts. His own language is actually in tandem to what he's trying to we're trying to say both uh both verbally as well as in the spelling model.

SPEAKER_05 16:50

Can I start over today? Can I start over today?

SPEAKER_03 17:04

You want to capital aye?

SPEAKER_05 17:06

He says no. I feel great.

SPEAKER_06 17:50

First.

SPEAKER_04 18:11

When my parents took me to learn to spell, I felt hope for the first time.

SPEAKER_00 18:16

I I wonder if if, Mary, you could describe a little bit more because there are hundreds of thousands of children and adolescents who are stuck in the same kind of hell that Ryan, you described. And what would be the first steps for these parents to you know to turn to? Would it be their regional center? Would it be to reach out to a developmental psychologist or a uh pediatrician? What would you recommend, both you and and Ryan, to share in terms of other families who, like yourselves, didn't imagine that there was brilliance below the surface and have found a way in in this wonderful case to tap into that.

SPEAKER_02 19:15

And and Mary, take your um your microphone is turned off.

SPEAKER_01 19:22

I think hopefully in a few years' time you will be able, they'll families will be able to reach out to the the organizations and people that you mentioned. But right now, um the only way to do it would be it's sort of like we have to prove to the powers that be that the child that can do it, that the non-speaker can do it. So it would be to reach out to the spelling organizations themselves, which is iasc.com, International Association of Spelling for Communication. So I'm gonna slow that down for one minute. i dash ASC.com.com, okay. There's also um Spellers Freedom Foundation, which is the organization I took Ryan to. Um, and then there is um there's there's three different branches of this very similar method. The other one is called Rapid Prompting Method, and I think the website to find practitioners in your area for that is um halo dash so ma dot org.

unknown 20:29

Okay.

SPEAKER_01 20:30

Halo dash salma.org.

SPEAKER_00 20:32

Okay.

SPEAKER_01 20:32

Yeah, and then you know, truly it's falling on the parents at this stage to get their child started. And then once their child is able to show, um and you know, is able to show that they're in there and that they're making progress, they don't have to be all the way to fluency, that's when um, you know, hopefully the regional center or the educational system will start to buy in.

SPEAKER_02 20:53

Um sorry, how long did it take for Ryan to um show, be able to show you that he was in there?

SPEAKER_01 21:08

Okay, well, I got lucky because that very first day I saw it, right? Uh because I knew that he had not been educated whatsoever. Right um, I did not believe that he even knew England was a country, um, let alone that it that's who we fought in the Revolutionary War. So where do you think he got that from? Was he reading? Was he listening to what? He was self-educating all his whole life.

SPEAKER_02 21:35

And and that meant what exactly? How was he self-educating?

SPEAKER_01 21:40

Listening to every single thing the family was talking about, listening to every single thing that was on TV. Um, in fact, he even told me um later that by age 12, I I put him on some uh meds. I had tried not to put him on meds, but he was having behaviors where we had to put him on meds. And he said that calmed his system down enough that he could start to read. And he said one of the first things he researched was autism. And that he said, and it was so frightening to see that all the experts had gotten it all wrong. That's one of the first things he told me. What a remarkable young man. My goodness. What what and he's not he's beautifully unique to me, but he's not unique.

SPEAKER_00 22:28

No, I I have actually had children in my children and adolescents in my practice who are who worked with the rapid response method. And um Ryan is one of thousands of very bright um captured individuals who are unable necessarily to uh both express themselves and are misjudged as a consequence. So I'm all in favor of this absolutely wonderful way of unlocking not only Ryan's path, but perhaps hundreds of families who look at our podcast tonight and go, oh my gosh, there's another avenue of hope.

SPEAKER_01 23:14

Which is that's why Ryan and I are very committed to advocating.

SPEAKER_02 23:20

Tell us about his ad how he's advocating, because as a young man to other young people out there, I think there's nothing more important than hearing somebody.

SPEAKER_01 23:34

Um one of the first few things Ryan, Ryan made it very clear that he wanted to be an advocate and he wants his career to be advocacy. He wanted to be advocate for all the people who are still locked inside and misunderstood. Um and he he very quickly um he started writing about it. He wrote blogs and he he did a lot of writing. He was very quickly got invited to conferences, um, these spelling conferences, and he was a uh a panelist at many conferences. He's also presented to the um DDNC Lindsay, what does that stand for? The um uh educational um conferences he'll go he goes to. He gives public presentations at the local college. Um he's actually working with the school that he went to. Um to oh, I I don't know if I should say that. But anyway, he's um he's um what else have you done, Rai guy? Sometimes he's even so he's he's done many, many presentations and blogs. He goes everywhere he's invited to speak. Um he's also personally sought out f families of friends that um he knew from school and begged their gone. He's I he calls it house calls. Like when I've tried to tell them, hey, listen, this is what's happening. Your kid can do this too, and they're like, not my kid, can't it can't happen. He's gone to their homes and just spelled to the parents until the parents promised to let them try it.

SPEAKER_02 25:00

That's the kind of advocate that everyone needs in every field where people have been pushed back and pushed down. They need someone like Ryan, someone any age that can say, you're wrong, I was in here, now I'm out.

SPEAKER_01 25:19

Beware. That's right. You know, there's something I just want to add quickly is that sometimes the hardest sell is the parents. Yeah. And that's the sell we have to make. And so I'm kind of glad when you know that Ryan's regulatory system isn't always perfect when he's doing this, so that people can understand that the outside presentation is nothing to do with the inside presentation. And and Ryan's actually pretty calm in his body, but there's spellers who are just you know bouncing and all over the place. I mean, there's no level of impact where we've seen that it means there's a cognitive um d impairment.

SPEAKER_00 25:56

So I I I would actually like to talk about so many different avenues. But one of the things that caught my ear, Mary, and I'd love to talk to Ryan about his girlfriend, because I think that that is such a important part of young adulthood to connect with a potential partner. And many of my individuals who are on the spectrum in my practice feel somewhat hopeless to uh, you know, uh even imagine that they'll have company with a partner. And I'm curious if if Ryan, you could share with us the story of how you met your girlfriend and how's it going? And Lindsay, you're on mute, by the way, if you just in case you don't know. She's probably spelling something out. That's okay. So you just switch boards, Mary. Is there a particular reason that one is better than another?

SPEAKER_01 27:03

I'm in New Hampshire, I'm far away from him, and I'm I'm the glasses police, so he's not wearing his glasses. So his his eyes, uh his eyes fatigue sometimes on the keyboard, and then he will revert back to the um the laminate. But also sometimes he just switches. But when I did ask him, he said it was because um the the keyboard will fatigue his eyes. Oh, so interesting. Most of them have lots of um um ocular motor issues. This this is much harder than it even appears. I'm sorry.

SPEAKER_02 27:38

When when uh when your son goes out to speak, do you go along with him? And if you go or whoever goes, um do you speak as a parent to other parents that I am assuming are in the room? Do you speak and tell them what you went through, what what you knew about your son ahead of time, what you hoped, and what you found out?

SPEAKER_01 28:08

Some presentations have been like parent panel and and non-speaker panel. And usually I answer those questions at the Q ⁇ A at the end, but mostly when when Ryan presents and sometimes on a panel with other spellers, we really give them the floor. Um but yes, I'm I always have opportunities to explain and speak and answer questions and advocate as well.

SPEAKER_02 28:32

And what kind of a reaction as a parent to other parents do you get? Um do they believe you? Do they believe it's possible for their child once they once you've explained this?

SPEAKER_01 28:47

Um what do you get? At presentations I get a lot of enthusiasm because there must be something that led them to even go to the presentation. Um personally, it's unbelievable what a hard time I have trying to convince other parents. I'll tell you what, I've had a lot of success convincing parents of small children on TikTok. That's why I have a TikTok presence because they still see that. They still see that intelligent child they know they knew was in there. Yeah. I've been beating out of them over the years. Um and they're still full of hope. The older pa the older parents like my age and Ryan's age, you know, the we they they've been through the gamut of uh they're exhausted and they've they've had a million failed um attempts at supposed great therapies, and they can be they can be a tough sell.

SPEAKER_00 29:36

And I'm just wondering in terms of just a realistic sell, how uh how often and the duration of the kind of practice that you and Ryan did prior to him being able to be more or less launched independently, and do you now work together or does Lindsay or some other uh support person work with him to continue to fine-tune these skills?

SPEAKER_01 30:03

Okay, so Ryan, every person is different. Um Ryan took to spelling very quickly and he was also at a stage in his life through a lot of biomedical that we had done that his body was relatively regulated. Um I think the pace at which they learned to spell and communicate openly has more to do with their regulation than their ability, you know. So Ryan and I, we sat at the dining room table for about 20 minutes every day or almost every day for about a year. What to he was spelling the whole time, but to where he got fully openly fluent. But some kids, his roommate, oh my gosh, just took off and is fully fluent within a few months. His girlfriend, fully fluent basically immediately. Um, others would take two years, four years, five years.

SPEAKER_00 30:50

Okay, so so Brian right now lives not at home. He lives uh in in what what are what the circle what are the circumstances of his current lifestyle?

SPEAKER_01 31:00

We bought him with some other families to a living situation where he lives with three other spellers. Um and but I he's he comes to my house. I'm I'm I see him four days a week. He does still spell with me, he spells with Lindsay, he spells with a partner that another spelling partner that he goes to college with. He he probably spells with four to six uh people at the same time.

SPEAKER_00 31:23

And did what kind of accommodations in college did you have to uh procure before Ryan went into uh the university setting? Okay, sorry.

SPEAKER_01 31:36

Sorry, go ahead. Please, no, go ahead. Okay. Ryan is at the Santa Rosa Junior College, California. The junior college system is a really wonderful system because he he he got just a certificate of completion. He didn't get a college diploma, a high school diploma, but they let him in with that. And he's been proving himself, getting great grades, and he could even transfer to a UC uh if he so chooses at this point. Um so they they they let him by the way, for our viewers, it's just a University of California University.

SPEAKER_00 32:09

Well, no, actually uh uh a full now he's in a four-year college. No, he's in a junior college now.

SPEAKER_01 32:15

Oh, okay. And I I I think the University of California system, so that's amazing. California system's been really easy, but I will tell you the colleges in general are much more receptive because they are not footing the bill. You have to always think about the money trail. Yeah, the school districts are not receptive because they're going to have to pay for anything you can prove that the that the child needs. But at the college, they're not paying. They go in, he has a meeting, they see the kids spell, they don't doubt it, they let them in class, and then the the kids prove themselves. Ryan started, well, Lindsay and Ryan started a club, a spellers' club at college, and now there's several spellers at the college.

SPEAKER_02 32:57

You know, this is just a remarkable thing. Uh, we are both great proponents of the junior college system in California because of a great many reasons. And here is another reason that they actually listened to what you had to say. They learned who Ryan was, and they they said, come on in. They said, Yes, there's there's a place for you.

SPEAKER_01 33:24

The only accommodations he gets is he gets time, he gets extra time. He's not taking like the disability courses, he's taking the regular course load. Terrific. And that's really all he gets is some extra time, and he gets proctored exams.

SPEAKER_00 33:40

So I'm gonna speak to one more point because again, I can only imagine a family who's listening to tonight's podcast and they're saying, Well, not only do I have an idea how to begin, but how do I approach regional center and ask for monies and how does that work? So, did you need an attorney? Did you need an advocate? How did you get the ball rolling so that families can access the now? This is part of self-determination dollars? This is self-determination. Okay, so for our viewership who's not familiar, so I would say probably about I don't know, Mary, maybe six years ago, there was a lawsuit that was won by parents in the state of California that went all the way to the state Supreme Court. Yeah, where prior to that, uh insurance companies, the regional center were determining for families who they could see and how they were going to get uh monies for various services. That uh that changed in the uh the lawsuit where the parents won, and what became available is something called self-determination dollars, and those can be used to pay directly to different vendors. And I heard your caution about you know that there's big monies and some vendors don't want to obviously organizations don't want to be uh sharing from so to speak the pot, but done right, self-determination can assist in getting uh a particular type of vendor and or um different type of modality to the individual with autism, and uh and you know, quite successfully.

SPEAKER_01 35:24

Yes, I mean right now in California we're we're having success with this using the self-determination program. And another thing I would just like to point out is who who you really want your child spelling with is you. So, you know, I did a little intensive down in San Diego. I went to Spellers and we did four days, and then she sent us home with homework, and Ryan and I got open uh in our dining room. So you don't have to be a professional to get your your child spelling. Exactly.

SPEAKER_02 35:51

Okay. That's that's music to the people who are listening, that's music to their ears because the idea of being able to pay for or needing perhaps to pay for an attorney means that they're not going to be able to do it. Right. But hearing you say dining room table, go to hear people talk, come home, do it, go back, find out more. Well, get trained, have them trained.

SPEAKER_01 36:20

Get trained, get trained. Right. Yes, you said that much better than I do. Go ahead. Um I'm not an educator, I'm not a teacher, but it was a lot of people. You're the you are better, you are in the best place ever. You're the mom. That's right. And so uh very replicable system. It's very easy to follow this the system.

SPEAKER_00 36:37

It's very I wanted to return for just a moment because we don't have that much more time left to to chat, but I wanted to find out if uh Lindsay, if if uh Ryan is in a place to be able to uh okay, so Ryan has shared in the chat.

SPEAKER_03 36:59

I'll just I'm just typing his comments in here just so you have them, but I can play the iPad too if that's good.

SPEAKER_00 37:04

That's fine. So he says, I I didn't quite put that can you can we put it back on so we'll we'll read it out loud?

SPEAKER_03 37:10

Okay.

SPEAKER_00 37:13

All right.

SPEAKER_04 37:14

He said, my uh dream is to my dream is to first reach all teachers and tell them when instinct tells them that a child can learn, they should trust that and educate as they're meant to, regardless of what they're told to do. Everyone can learn even if they can't speak.

SPEAKER_03 37:32

That's wonderful. And then he has a part about Brenda in here too. Say that again, Brenda.

SPEAKER_04 37:38

My girlfriend Brenda is first my friend and fellow advocate. Deep relationships are possible for non-speakers.

SPEAKER_00 37:46

That's wonderful. Absolutely. That's wonderful. Well, Ryan, I know that just being on air is challenging for a lot of people, and I we uh so appreciate your appearance today. Thank you for telling us about your girlfriend, and most importantly, thank you for telling us about how much you are an advocate and believe in the capacity to be successful and reach the greater public. Can you tell us what he just said? Ryan, what did you just tell us, Ryan?

SPEAKER_05 38:25

I'd go for an explanation.

SPEAKER_04 38:27

My girlfriend Brenda is first my friend and fellow advocate. Deep relationships are possible for non-speakers.

SPEAKER_06 38:40

Thank you.

SPEAKER_02 38:45

You are so very, very welcome. Absolutely. It is just a pleasure to meet you and to s and to have you tell us to have you tell us everything you've been through, and to tell the people who will be watching us that there's hope.

SPEAKER_00 39:08

And I think the most important thing, Ann, what we're talking about is hope and not false hope.

SPEAKER_06 39:14

Opportunity.

SPEAKER_00 39:15

Opportunity. Thank you, thank you, Ryan. Absolutely opportunity. Wonderful. Thank you again. This is Dr. Estee Hess.

SPEAKER_02 39:23

And I'm Dr. Ann Kirsch, and you are watching On and Off the Spectrum. And we hope that you have not just enjoyed, but that you've taken away from the conversation we've had tonight something so important, something so serious, that you can apply it perhaps to a young person, an older person in your life, but also be able to say to yourself, wait, I think I know someone that I should show this podcast to.

SPEAKER_00 40:02

So with that in mind, please know that we are located on all the social media platforms: Spotify, Apple Music, YouTube, YouTube, um, you know, certainly all you uh all the social media. We're gonna put it there. And please also know that if you enjoyed tonight's programming, please don't hesitate to follow, to subscribe. And if you think that you yourselves may want to add to our big story, please reach out and let us know that you would like to be a speaker on our program. Again, this is Dr. Estee Hess.

SPEAKER_02 40:44

And Dr. Ann Kirsch, and it has been a life-changing podcast for many.

SPEAKER_00 40:51

Thank you so much again. Mary and Ryan Heller and Lindsay, thank you again as well. Thank you so much. Absolutely. Take care, Ryan. Thank you. Thank you. Great job. Great job.