Understanding NVLD, with Ryan Lundy | EDB 272

 

Self-advocate Ryan Lundy shares his experiences with NVLD – Nonverbal Learning Disorder.

Ryan Lundy is a self-advocate for NVLD (Nonverbal Learning Disorder / Disability). He is also a teacher’s assistant at the Els Center for Excellence with Autism, and a special ambassador for the NVLD Project, an organization dedicated to raising awareness, building support, and creating helpful solutions for children, adolescents, and adults with NVLD.

To find out more about the NVLD Project, visit: nvldproject.org

To get in touch with Ryan, email him at: rhlundy85@gmail.com

 

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DR HACKIE REITMAN (HR):  

Hi, I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. Today, I’m exciting to be speaking with Ryan Lundy. He’s a nonverbal learning disorder self advocate. He’s up there where he works at the Els Center for Autism — an excellent place. Ryan, welcome. Thank you for being here.

RYAN LUNDY (RL):  

Thanks for having me on Hackie I’m glad to be here.

HR:  

This is very exciting, because, you know, I was always confused by nonverbal learning disability, okay. And why don’t you tell us a bit how you got diagnosed with nonverbal learning disability.

RL:  

So the tendencies are, I don’t understand some social cues, jokes, I have difficulty in social situations. And my early years, I, my parents always thought something was off about me. And they didn’t know what why. So then finally, they took me to a psychologist to get tested. And in middle school, and they diagnosed me with the nonverbal learning disability and they had never heard of it. Throughout the the early childhood years, I’ve needed occupational therapy did not need speech or PT. I was lucky with that. But I did need OT and… Also a tendency is fine, gross motor skill. So I’m not I’m have good fine, gross motor skills. And, and then I got the diagnosis. My parents were, didn’t know anything about it. And they had to do research still, it’s uncombed disability. The NVLD Project, which I’m a special ambassador for just filed a couple weeks ago to be in it officially part of the DSM. And hopefully that they will be approved to be in the DSM and VLD. Now, that is going to be big news. If they can pull that through. If they can’t get that, then they’ll just keep keep trucking away, like we all do, until they can get into DSM V. You know, the DSM five is basically the official diagnosis. It’s a whole directory, it’s official, so you can get an official diagnosis of what it is. So it’s not really common. DSM V is common, but DSM V is — there’s many, there’s many articles and things I would highly recommend Google look about. I’m not an expert about that. But it’s exciting if it’s going to happen the DSM V, or it’s going to be an official diagnosis. But for now, it is what it is. And I’m trying to spread advocacy for the NVLD Project, which is based in New York, they are a great organization, one of the only ones in the country, for NVLD. So it’s very rare. They have other ambassadors, and we write articles. And I’ve been on some Facebook Lives. And it’s just a good organization. So www.NVLDProject.org.

HR:  

NVLDProject.org. I’m sure we’re gonna go there and see what’s going on there. What are some of the specific tools that you’ve learned, that have helped you that you might want to share with our audience?

RL:  

Some tools that helped me are keeping my keys, wallet and phone in a box when I go home, I have it in a box because I have tendencies of losing things. Basically, all of those I’ve lost several times. I’ve lost credit cards, cash, everything. So now I have…

HR:  

By the way, let me interrupt to say me too, if I don’t put it in exactly the same spot in a certain draw. And exactly in the same pocket. I am. I lost it. I lost it.

RL:  

Right. But now it’s great with technology that they have the app and Apple has chips and other companies has devices where you can track your phone or you log in on parents have that information and put it in a wallet too and on your key ring, and it won’t tell you the exact location, they’ll tell you around the area. And that’s a helpful tool that my parents have discovered for me, especially because they’re up in Pennsylvania now, and I’m down in Florida. And I can’t watch over me 24/7.

HR:  

That’s a good tool. Tell us about the work you’re currently doing at the ELS Center for Excellence for Autism.

RL:  

Okay, so currently, right now, I am a teaching assistant at the Learning Center, I will be going into my second year there, since I just moved here from Pennsylvania, almost marking the one year anniversary will be at the end of July will be one year from here. And there I’m a teaching assistant. And what that does is since the teacher and anything they asked with behavior, obviously, there’s BCBAs behavior analysts there that train you on the plans, and we all collaborate. We set up the classroom, we have prep materials, we just engage with the students make sure you guys are having a positive experience. And yeah, it’s been going great. At first I was nervous, I didn’t know anybody. And then I made some friends. And some cool  co workers that are in I feel like it’s a family. It’s really comfortable. there and I love it. Also there, I started helping out in the recreation department, after school and what’s how we can continuing doing in the fall, which I love. Because recreation is my background, I have a degree in recreation and leisure administration. So that’s my bread and butter. Besides everything else. I love sports, I love exploring, I love being active. So, so what I do there is I assist the recreation coordinator and the other. The other staff, with the participants in activities, the activities are golf, yoga, tennis, dance, and music. They hope to in the future, add more programming, and my goal is to hopefully help them in the future with that, and so that’s that, and then I work privately for individual families. Now, I get that through word of mouth, I have. I have four or five clients. So far, some of them are regular, some are not regular, based on the individual needs of the families. And the way I get the clients is just word of mouth. And because the special needs communities very tight knit community around this area. So once you know, somebody will then refer you to another person. With that my services I offer are community integration, taking the individuals in the community, taking them out to different recreation events and other places. Also companionship or babysitting, what the parents want, and whatever, whatever else the parents really need just give the parents a break. Sometimes I am with the parent, and they go out with me into the community. So I will still work with the individual but the parent will be there. But the parent might go off and do something and I’ll still help the individual. And lastly, I work for it’s called the organization called Love Serving Autism, great organization. And she’s in different, many different states and what I do for them as I teach tennis to individuals with disabilities now I do this once a month. In the summer, we’re taking a break. We’ll start up in the fall. Actually, the group I teach is actually a lot of the individuals that go to the Learning Academy, the high school and one of the ladies organize the group over there and so it’s good I get to see the participants, a lot of them do the recreational programs at the ELS for Autism Center. So it’s good to have that relationship and it’s also good to see them around campus.

HR:  

They’re a great organization Love Serving Autism. We went up and visited them and they’re great.

RL:  

Yes, the lady Lisa is amazing. She’s expanding her programming and locations. And he’s amazing.

HR:  

What made you decide — and we’re so glad you did — to choose a career that helps other neurodivergent individuals?

RL:  

What made me decide is I’ve seen the struggles, I’ve been through it. I live it every day. It still haunts me. And I know what the families are going through, my parents had to sacrifice a lot, a lot of money, a lot of time, the weekends, socialization with their friends, for me, they gave, they gave 100%, they still will give 100% for me. So I’m firsthand, and I’ve seen it all. And I know that I want to give back I feel it’s my calling to give back. And I’ve been put here on this earth to give back. So that’s why I’m here.

HR:  

Good for you. We’re glad you are and we need your expertise. Where do you see yourself five years from now?

RL:  

That’s a great question. Five years from now, I probably will be in a recreational position working for an organization with special needs doing recreation. I’m not sure where that might be. But that’s where I see myself. That is my bread and butter recreation I need. If it’s not if it’s not in recreation, adult services, and also be doing my side business. I also see myself doing advocacy work like I’m doing right here. I’m sharing my story. I really want to get into the conferences, colleges, universities to share the story, tapping into any disability organizations, and it would be nice to get paid for that. But I know I gotta start somewhere, like I’m doing right now. Rome wasn’t built overnight.

HR:  

What age group you work with?

RL:  

Age groups I work with right now I work from with kids range ages 5 to 22. But in the school, I work with middle schoolers, that’s my primary range. But like I’m working the recreational camp this summer at foundation with ages 18 to 21 year olds. I’m looking forward to because in my first summer as a camp counselor at the foundation, now I have been camp counselors for 15 years. So nothing fazes me. I used to be a camp counselor at the same camp, I used to work that it was just a typical camp. Not as special needs camp, but I’ve done summer camps forever. So I know camp very well. I’m looking forward to enjoying the camp experience at the Els Center.

HR:  

In the adult population you work with on a consulting basis in your side businesses and stuff. Doesn’t matter what the age of the adult is?

RL:  

Doesn’t matter. I can handle anybody. I’ve seen it all. I’ve seen the whole gamut of the spectrum. So I’ve been through a lot. You know, I’ve seen kids and adults throw chairs, desks, I’ve been hit bit scratched, you name it, it doesn’t. It’s teaching me Tommy a lot of patience for these individuals, because I’m not very patient person. To be honest. Over the years, I’ve had to learn patience, working with these individuals in everyday life, you know that and that leads to another point I want to make is with patients. I’ve had numerous jobs over the years and they say I have ADD but I don’t, wasn’t officially diagnosed. So like my mind is always thinking about like when you said 5 years, 10 years down the line. And I think in living in now and doing now so my parents always say that to appreciate the now look where you’re coming from. Because I’m always thinking, looking at this organization how I can do something which is okay, but you can’t obsess for like three or four hours. Like I remember I could sit on the computer and just obsess. That’s one that’s one of the part of my on disability two, I get I really get into like a company. An example would be my, my dad, he’s always been in the hospitality business, like franchising, like a president of company and started with some companies. And I always get jealous of him because he would be, you know that title. And then I would try to tell him like what to do. So it’s gotten to a point where he doesn’t want to even tell me what he’s doing right now, he just doing some consulting here in there, he’s basically retire. But on the opposite side, I wouldn’t really want to have with my mom, she’s doing this speech pathology, but she just some clients here and there. So there’s no bird. So they were lucky to have a two bedroom place down here where I share with them back and forth. So otherwise, I couldn’t afford a nice place and I’m blessed for them. So getting back to my dad, so it’d be jealous of my dad. You know that the title, I honestly want the title. And people say the title comes with a lot of stress and responsibility. And, you know, I thought about it and I still liked that title to tell people but right now, I’m okay. I’m still I still may want the title one day, Well, kinda. Okay, where I am now, it’s, it’s still hard for me to like…

HR:  

oh, you know if it’s any help to you. There was a fella many years ago named William Shakespeare, who was a great writer in England, and he went to his great sayings was “a rose by any other name would smell as sweet”. So he wasn’t real big on titles is what you are and what you’re doing. And you’re doing terrific stuff. That’s helping a lot of people whose brains might be a little bit different, but I have great potential. And it’s, I really admire what you’re doing. So great.

RL:  

Yeah, I’m always looking to help the next individual, whether that be adult or kid, or family. 

HR:  

If a family wanted to go about hiring you for special consulting in what you do for their, their child or adult child how would they get in touch with you?

RL:  

They could email me at Rhlundy85 at gmail dot com.

HR:  

Is there anything that you want to cover today that we haven’t covered?

RL:  

Yes, I want to say that. Here’s my advice to parents. Now they if you find that a person if your individual is, if there’s something that seems not right now, the earliest you can, I would try or they say is like when you’re three. But the earlier you get service, the better. And now, as you know that different states have different rules with the whole waiver system. And that’s a whole nother story. And I’m not an expert on that system. But the earlier you start you get if you get the diagnosis, the better because the earlier you set up the services, the better because there’s a lot of there’s a lot of people that are not educated about the different services. I’m not an expert, to tell you what services to get. I’m just saying that you really have to do a lot of homework in these organizations because not every one of them is the same. Meaning that if you want a certain service, you might have to go searching for it. Now not that you have to move to another state but people have moved to different states for different services. And obviously a lot of people move to Florida for the Els for Autism Foundation because it’s one of the one of the best in the country. And that’s why I’m blessed to be down here and honored to be a part of it. And it’s growing. They just three or four months ago, broke ground for an adult service they are building that will have life skills classrooms and apartment model style where you can learn how to do life skills, like you’re an apartment, and they’re going to have a golf shop. And they’re going to have a drive thru coffee business. So there’s, it’s very exciting. It’s a great place to be, they still have to build up more. And, yeah, it’s, that’s awesome. So I have to, I have to say that if you see signs early, go get tested. Even if it’s not a diagnosis, at least, you know, it’s better than not. And hopefully your insurance covers it. Each insurance is different about that each state is different about that, too. That’s the whole thing. Another I wanted to bring up too, is based on the state, different things covered differently, like insurance, but each state has different laws as other things. It’s not a universal thing, that you get this and you automatically get this, which is, which is good and bad. Because you could be on waiting list for a while and the quality of the care. You need good quality people. Not saying I’m the best, but like that’s invested in it, that give 100% into it. And don’t just I’ve seen a lot of staff when I’ve observed in group homes, and also out in the community, sitting on their cell phones not engaging with the client. It’s not that you have to engage every second with the clients. But so I was there for a little bit. And then I came back the next week, I see the same staff doing the same thing. And it just it breaks my heart because families pay for this. And if they knew what, what they’re getting, they wouldn’t they would stop it right away.

HR:  

Well, Ryan, what is one thing that you wish that everyone knew about nonverbal learning disorder — NVLD?

RL:  

One thing is, I wish that there would be more of an acceptance of it. People have not heard of it, meaning people think it’s really — you’re nonverbal, you’re not allowed to speak you can’t speak so it’s like a misconception of it. So I really want people to not take that misconception and really look into what exactly what it is and accepted for who it is and not try to say oh, it’s something else. But it’s that’s what it is.

HR:  

And remind our audience again, a brief definition of what nonverbal learning disability is.

RL:  

Nonverbal learning disability is you cannot read social cues very well. For me, it was jokes. For me, it was had a communication back and forth with texting and messaging over the internet reading there’s verbal nonverbal cues. Low gross motor tone, you will have low gross motor tone. So the motor tone and sometimes it’s visual. So you cannot see you know.

HR:  

But when you’re speaking when you’re having a conversation on just the speech aspects?

RL:  

Yes. Reading body language too. How person’s feeling their emotions, what they’re trying to convey, when to pause, when to interject those kinds of things. 

HR:  

All righty. Is there anything else you’d like to tell our audience before we adjourn?

RL:  

I just want to give credit last thing to my parents for raising me dealing with all my stuff every day. They like I said they invested time. Sacrifice the weekends and energy. Also for my sister for putting out with me because I’m not easy at times. I was always jealous that I forgot to mention her. I was really jealous of her. She was the popular one. She always had the boyfriends and she would know ever introduce me to her friends? So we just missed each other because we graduated four years apart from each other. So four years I’m older for four years. So yeah, I would just give credit to my parents and my sister for putting up with me and still putting out with it because I know I’m not easy. Every day is another mystery.

HR:  

Well, seem pretty friendly to me. Ryan Lundy, great self advocate for nonverbal learning disability. Continue your good work up at the ELS Center for Excellence for Autism and doing all the stuff you do and and we hope that you’ll stay in touch with us here at Different Brains. Thank you for taking the time today.

RL:  

Thank you very much appreciate it Hackie, and I definitely want to stay in touch