Through the Eyes of Others: Communication and Perspective in a Silent World

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“I really feel it was those foundations that I learned early on in my life of being in an athlete and having to put in the work and also focusing on doing the best that you can do. I think that was a big lesson that I learned is like focusing on your strengths and not comparing yourself to what other people are doing”

Elaine Keuning

[EP008] Through the Eyes of Others: Communication and Perspective in a Silent World

– Guest Elaine Keuning, Speech & Language Pathologist

In this episode of ‘Choice, Not Chance. Simplifying Success,’ host Marie Chindamo discusses a thought-provoking topic on the importance of communication, especially for individuals with high cognitive function but no capacity for language. Guest Elaine Keuning, a speech and language pathologist, shares her experiences and methods in working with individuals with Rett syndrome, a neurological disorder that affects communication. Keuning highlights her journey from broad-spectrum speech therapy to specializing in aiding non-verbal communication using advanced technological solutions, relentlessly helping her clients find their voice so they can expand their personal purpose. Despite encountering various professional challenges and societal hurdles, she emphasizes the transformative power of intentionality and constant learning. The episode underscores the triumphs and continuous efforts in supporting and giving a voice to those who communicate differently.

Highlights from this episode:

00:00 Welcome to Choice, Not Chance

00:27 The Importance of Communication

02:07 Introducing Elaine Keuning

04:41 Understanding Rett Syndrome

07:56 Challenges and Success Stories

29:21 Launching a Private Practice

34:45 Mastering AAC Devices

35:15 Building a Client Base

36:07 Specializing in Rett Syndrome

39:08 The Importance of Saying Yes

42:25 Core Values and Success

43:13 Athletics and Business Parallels

47:08 Challenges and Triumphs

51:03 Global Opportunities and Technology

55:11 Future Aspirations and Gene Therapy

58:44 Final Thoughts and Contact Information

Connect with Elaine Keuning:

Books or Resources Mentioned:

RettSyndrome.org

Reverserett.org

A little bit about Elaine Keuning:

Elaine Keuning is a speech and language pathologist with 14 years experience, She carved her own path to focus on an underserved population of individuals with complex needs.

Before starting her own business Elaine worked as an employee for several agencies servicing the tri-state area. Currently she leads the Rett Syndrome communication clinic at Montefiore Children’s Hospital and has her private practice Williams Speech and Language Pathology PLLC.

Elaine believes that access to language is a basic human right and individuals of all abilities should be able to have their own voice.

Transcript:

[00:00:00]

Welcome to choice, not chance. Simplifying success. I’m your host Marie Chindamo. In each episode, we’ll explore how to simplify life’s toughest decisions, helping you cut through the noise and focus on what truly matters boldly, yet simply directing your success. It’s time to stop leaving your future to chance and start making choices to shape your destiny.

Welcome, everyone. This is Marie your host today for Choice Not Chance Simplifying Success. And in today’s episode, we’re discussing an incredibly important topic that is sometimes taken for granted, the importance of communication in expanding our purpose. Today’s discussion is generally relevant for those unfamiliar with the capabilities of individuals who have a high cognitive function but no capacity for language. Well, so let’s start with diving into what communication really means. It’s not just about speaking, it’s about expressing ideas, emotions, and intentions through various forms. Even without words, communication is vital to human [00:01:00] connection and understanding.

Many people are unaware that individuals with high cognitive function, but no capacity for language, can still communicate effectively. They use alternative methods such as sign language, writing, art, and technology to express themselves and connect with others.

Raising awareness about these individuals is essential. Society often underestimates their abilities due to their lack of vocal communication. By understanding and supporting their unique ways of communicating, we can help them find their voice and ensure they are heard. So in this episode, I speak with an incredible human who has found her purpose in life serving a specific population of people with a disability called Rett syndrome.

The clients she serves have a high cognitive function, but no ability to express themselves through physical voice. She teaches them how to communicate with the tools that extend beyond spoken words, supporting their fundamental need for human interaction and personal growth. The aim of today’s episode is to spread awareness and [00:02:00] support for those who communicate differently recognizing the strength and potential they bring to our collective purpose.

Marie Chindamo: Today, my guest is Elaine Keuning. And Elaine is a speech and language pathologist. She has 14 years of experience and she carved her own path to focus on an underserved population of complex needs before starting her own business, Elaine worked as an employee for several agencies, servicing the tri state area, and she currently leads the Rett Syndrome Communication Clinic at Montefiore Children’s Hospital. And she has a private practice, William’s Speech and Language Pathology. She believes that access to language is a basic human right.

And individuals of all abilities should be able to have their own voice. Wow. Yes, I absolutely agree. Thank you Elaine for coming on today. I find it so interesting. The work that you do is particularly with the population that you’re serving and I have tons of questions for you, but before we jump in.[00:03:00]

I do want to find out just a little bit about the work you do and, what makes it so special.

Elaine Keuning: Okay, sure. So I early on in my career really was able to fine tune. Honestly, I was provided opportunities to be able to specialize with this population of individuals with complex needs.

And I just fell in love with it and went with it. Generally, a speech and language pathologist works with a range of needs. And that’s what it was when I first started. So I might have some kids that just have some articulation disorders. I might have a student that has a language disorder, very mild, they’re going to regular school.

Some kids with language delays just because of their language disorder. Financial situation where they live. They didn’t have as much experience and they’re a little bit delayed and behind. And then I might have more severe like having mothers breastfeeding a child with down syndrome. And I was right out of [00:04:00] college.

So it really was this giant spectrum of patients that I had to. learn about honestly, because in my field, you’re given a broad field of study. And when you start, you don’t know exactly what to do. So that’s when you have to go back and you really research.

And I found that very overwhelming. I tried my best, me being out of college, not having had a child of my own. I did the best that I could for my patients, I really knew they needed better. So to be able to really focus my my work on one.

One disorder. I feel like I was lucky to be able to do that. And I’ll hear that from other people in my field. So I work with individuals with Brett syndrome, those R E T T. It’s a neurological disorder. It’s a neurological progressive disorder.

That’s genetic. So individuals with red are it’s one in 10, 000 chance for a female to get red syndrome, and it’s even rare in males, but there’s [00:05:00] a very big misconception that males cannot get red syndrome. I’m always trying to advocate for that because a lot of our patients that we get at Montefiore have been misdiagnosed for so many years and really aren’t getting the therapies they need to to make progress.

Globally. So I just, and it’s Rett syndrome awareness month as well. So I think this is very fitting. And I also think today is a Rett syndrome awareness day, the 15th. So this is

even

Marie Chindamo: better. Wow. How, and we didn’t even plan this. So today’s October 15th, the day we’re recording this and wow, this is just like really serendipitous.

Elaine Keuning: Yeah.

Marie Chindamo: So Rett syndrome. From a little research that I’ve done prior to bringing you on these individuals have a potential lifespan to in their 40s and 50s. Is that correct?

Elaine Keuning: Yeah. And as medical things advance You don’t die from Rett syndrome, you die from the complications that it causes.

So with the advances in medicine and a better understanding of how Rett syndrome affects the body they’re able to live long, [00:06:00] fulfilling lives, but they need a lot of interventions to be able to do and even more exciting is medical advances with treatment with genetic treatments genetic replacement therapies.

We’re in phase one trials right now in humans and they’re able to actually reverse in the mice models. So that’s going to be really big.

Marie Chindamo: So when you say genetic, meaning post, post birth that, or, yeah

Elaine Keuning: They started with. Actually individuals around 20 – 21 years old, and they actually went in using like CRISPR type technologies.

I’m not a doctor. I don’t fully understand it, but it is. It’s gene replacement therapy. So they are given a healthy dose of, I believe, the MECP2 protein that genetic marker in the hopes that the body starts producing more MECP2, which affects your neurological branches. So if you think about it, every part of your body is innervated by a nerve.

So for [00:07:00] someone with Rett syndrome, every part of your body is affected. That’s why they’re not able to speak. It’s a motor based disorder. It’s not that they don’t cognitively understand. It’s that they’re, they want to do in their mind is not able to be expressed in their body.

And there’s a lot of variabilities in how they present on any day.

And unfortunately is progressive. So you know, someone that is three years old with it might have some words and then they slowly lose that ability as they get older and older.

Marie Chindamo: I was going to ask you that if they had any cognitive decline or do you feel that their cognition is can maintain a normal cognition,

Elaine Keuning: memory, all of those factors are remained.

It’s just harder and harder for them to have an outlet to express it because their body might get a higher tone, their movement possibilities might be decreased. So for someone that doesn’t understand. Stan Rett syndrome. There was cognitive decline, but it’s not, there was a physical decl

Marie Chindamo: This is incredibly interesting on many levels, right? [00:08:00] Human behavior, human quality of life is incredibly dependent on communication, right? We’re a social animals and communication is, it fosters relationships, connections, ability to manifest your visions, your values, right?

How, I have so many questions, how is If they’re physically inhibited how else are they, how else do you help these individuals get, their thoughts out and share what they’re thinking and feeling?

Elaine Keuning: In the beginning, this population was classified with the autistic community.

With autism spectrum disorder, because a lot of the behavior started to present themselves around the age that someone with autism might be diagnosed around that, like two, three year old age where they might’ve been doing some skills and all of a sudden they appear a little bit more. Withdrawn, and they’re starting to lose skills, and they’re starting to have some repetitive hand movements, so it’s very common for someone to come into Montefiore [00:09:00] and have a diagnosis already of autism, and then through genetic testing, realizing that It’s not autism.

It is Rett syndrome. So at this point, it does have its own disability classification because through science, we were able to compare what does someone with Rett syndrome Visualize on a screen. So there are cameras that actually can record where you’re looking and record that data on a screen. So I gaze technology was huge.

It really was a turning point for my patients. So what they did was they put a a picture of someone’s face and they compared it to someone with autism and they found that someone with autism really has a difficult time looking at your facial features which would give you feedback on what emotion someone is feeling.

So someone with autism might be looking at their forehead and I don’t want to put everyone in a bubble in one box but on average that’s what we were [00:10:00] seeing. Whereas someone with Rett syndrome wasn’t very keen on looking at the eyes and the mouth and between the eyes to really pick up on that facial expression.

So that was like our aha moment where, okay, there’s something going on here that’s a little bit different than. What we first thought. Then they did more of a receptive task where they put a bunch of common items on on the screen, on the computer screen, and they recorded, as they were saying, the names Scissor Cup bed.

And when they reviewed that, they saw that they were looking at the items as they were being. So they’re like, okay, so they receptively are understanding language, but to what capacity? We’re not sure you need communication to really know what someone so again, technology advanced and eye gaze came, became a method of interaction with the screen.

You could essentially control a mouse with your eyes. If you look long enough, it can actually click or select.

Marie Chindamo: Oh wow. Wow. Wow.

Elaine Keuning: [00:11:00] So there was already a lot of applications. You could get an iPad that had like a language grid, which would have a little symbol and a square. And if you clicked it, it would speak for you.

That kind of gave us our in to be able to use that communication method for someone with Rett syndrome and the rest was history. They were just good at using their eye gaze skills to be able to communicate because they were doing it already. They, it was the only part of their body they had the most control of everyone that comes in newly diagnosed.

They’re like, I know my son or my daughter is in there because they’re looking at me. Like they’re directing me with their eyes. They’re talking through their eyes. We hear that again and again. And then when we put them on the device, it’s It’s you don’t even need to teach them how to do it.

You play some cause and effect games, and they’re just naturally able to utilize their eyes because they’ve been doing it for so long. It was the only thing that they had control over. So yes, that’s like the intro to communication for someone with Rett syndrome is get [00:12:00] them an eye gaze based augmentative communication device.

as soon as possible.

Marie Chindamo: Wow. Wow. Yeah.

Elaine Keuning: So that’s how my students are. I’m teaching them how to communicate through the eye gaze modality.

Marie Chindamo: What age range are you working with?

Elaine Keuning: So anywhere from two years old to I believe 24 years old, I currently work with, but at the clinic we have As young as a few months into late adulthood.

Marie Chindamo: Oh, wow. So you still go into the latter, the more adult years?

Elaine Keuning: Yes. Yeah. So the technology for someone that’s in their forties and fifties was not there when they were younger, unfortunately, and that realization that it’s different than autism. The reason for the behaviors are rooted in something different.

It’s more movement based neurological. Unfortunately it’s a lot harder to introduce communication [00:13:00] to someone that is in their forties and fifties versus. Someone that’s two years old and they don’t know any different. It’s almost like sign language, right? If you have a child that, is deaf and you choose that you’re going to do sign language, you start signing to that child from birth.

And they don’t know any different. For someone that is older, if you’re like, Oh, all of a sudden, okay you’re going to communicate with. Sign language. It’s going to be harder. It’s harder to learn a language when you’re older versus when you’re younger. So it’s not that we can’t, it’s just a little bit more difficult.

So the strategies we might take would be a little bit different for someone that’s older. Might use more phrase based communication versus teaching them to use individual words to form sentences, just because that’s easier and receptively, they’re at a much higher level than someone That’s two years old.

We say, treat our patients as their actual age.

Marie Chindamo: Okay. Okay. Yeah. Given your expertise as a speech and language pathologist what have you [00:14:00] observed with your clients? And I know some of them are young, right? So they’re still learning awareness about life in general, right? But in terms of how they approach life and with intention, how do they intentionally choose to improve the hand that they’re dealt with?

Elaine Keuning: A lot of people with disabilities that I’ve seen talk, and this has been a learning curve as well, your view on disability and how you work with someone disability is, when you say that you feel bad for someone with a disability or, oh, for them, Someone that has had this their whole life.

They don’t know any different. This is a part of them. It’s who they are. And there are very different views about this, but this is what I resonate with my patients is that I’m going to treat you just like any other person. There’s an amazing Ted talk of someone that said people give me credit for doing just regular daily tasks.

And I did nothing special. They say you’re an inspiration and they’re like. Why? I just was [00:15:00] able to lean down and pick something up. For my kids, they don’t know any different, they are, I’m sure there’s moments where they’re like, why can’t I do what someone else is doing? But I really see that they, again, carve their own path in their lives.

They are able to express their, and that’s where they start expressing their opinions and their feelings and their wants. And advocating for themselves is really the life skill that comes through for someone with Rett syndrome. And it’s the most important one because someone with a disability generally is put on a path of learning activities of daily living, how to make a sandwich, learning how to make your bed, learning how to clean a table.

That’s not the path for someone that has Rett syndrome. Communication and literacy are their path. My, my patients are, they don’t have easy lives, but you would never know because they are the happiest, sweetest, kindest people. They’re my best friends. I could [00:16:00] go a whole day and something’s bugging me in the back of my mind and no one has asked me like, are you okay?

And then I’ll sit down with my student and they look at me for one second. They’ll say, are you okay? Because they pick up on that. They’re right.

Yeah.

Elaine Keuning: Emotionally attuned. Yeah,

Marie Chindamo: they’re just. That’s a fascinating thought. You think about it. It’s just like any other sensory deprivation, other senses pick up.

And I guess because they have to depend so much on eye contact reading, reading others. Yes. Can you share with us any success stories that these, any of these individuals have? What has been the, one of the biggest success stories that you’ve seen or experienced, whether it’s with your patient or somebody in that community?

Elaine Keuning: There’s two moments that come to mind. And my first patient was that I had one on one that introduced me to Rett syndrome. I started when she was two and a half years old. Her mother asked me to learn this communication book because at that time, I guess technology was just [00:17:00] coming out.

So it’s this big book of symbols and there was like a very specific method on how to use it. She was like, would you learn this? With my daughter to teach my daughter. And I was very early on in my career. I was like, yeah, absolutely. So she paid for me to get trained in this method. And I still was okay I’m not sure if this is working.

And in this method, it was like, you are modeling. Modeling is showing the individual how they could use the communication book to communicate. So it’s almost like you’re talking to yourself, showing

them

Elaine Keuning: and offering them opportunities. So I’d have these like hour and a half sessions where I’m talking and talking and you’re not getting much back from the individual because they’re still trying to work it out.

I’d leave. My voice was like, So hoarse. ’cause I’m talking to myself for a whole hour and a half and one day she guided me in her communication book to say to look in her bag. She said, look, backpack. And she had, it was over a holiday break and her [00:18:00] backpack was to the side and I. When you’re doing AAC, you assume confidence.

So I’m never questioning. It was the first time she said backpack, and then pairing it together. I was like, okay, is this coincidental? But you don’t do that when you’re teaching AAC. You assume that what that person is saying is what was intended. So you go with it. Yeah. I’m like, all so I look in her backpack and in the bottom of the backpack was a cookie that she had made in school and baked in school.

Someone forgot to take out of her backpack. And I said, were you trying to tell me that someone left your cookie in your backpack? And she nodded her head. Yes. And that was like, and I left that day and I was like, it works. It works. And this was like weeks. Months of just modeling, and it finally worked and that, most SLPs at that point probably would have given up like this isn’t working because we’re always looking for, in our world, immediate success.

And when you’re teaching a language, [00:19:00] especially for someone that has such a complex body, there’s no such thing as immediate success. The progression is a giant leap forward. molehill. Like you’re at the top of the mountain and then you’re at the bottom of the mountain again. So success is not like a just straight upward trajectory.

So that was what kind of bought me into it. And I was like, okay, this works. And I fell in love with it. And that’s all I needed. Wow. So another moment I think that’s successful was with my adult patient that I work with. So a lot of the students that I have we’re in their home. We’re in like an isolated setting because they’re school aged.

We’re not going out into the community so much. They’re doing that with their parents, but with this adult client, she’s not in school anymore. So we’re able to go and bring her device in. into the community and really practice these skills in real life situations. It’s difficult because if you think about being in one on one therapy, there are limited distractions.

And someone that has a sensory processing [00:20:00] neurological disorder. Distractions are very, it’s very hard to focus to communicate. But we had a moment where we wanted to go to this art installation in the city and it had started to rain and there was a very big line. And she was in a wheelchair with her device.

So me and the caregiver went to the front of the line and we said, would we be able to get in sooner? We have her device and the guy said, no, you have to go to the back of the line. So my student went onto her device. In the right moment, went to her GIF page. She has a way that she can select a word and a GIF pops up.

And it was the GIF that was, Oh, come on. And someone like pulling their hair out. And it was perfect. It was just like we had been practicing and that’s when it all comes together. And that was another moment where I was like, all of that work, all that practice, all of those failed attempts.

It doesn’t mean you should give up like it’s going to come through when it’s done. They need it.

Marie Chindamo: [00:21:00] Wow, that’s yeah, you just take so much for granted with the ability to have speech, right? Just, we just take so much for granted. And so many people, just don’t even work with the skills that They have advanced skills in terms of their life desires.

Have you ever gotten into any conversations with your clients about what they want to do with their purposes in their lives beyond just learning how to communicate? I’m clearly they must have dreams, aspirations.

Elaine Keuning: Yeah, we bring it up a lot with them just talking about what do you want to do when you get older?

And it’s also part of their programs. Like you, they start very young in their educational programs, trying to think about what does life look like after school? And it’s very different for all of my students. I think Job skill training is for in the traditional sense is not generally the path that most of my patients take just because [00:22:00] independently, they’re not able to be autonomous, independent communication, independent functioning for someone with Rett syndrome is not their autonomy, they need a support person at all times to be able to function and express what they want to say.

So they do need support and also their medical needs throughout the day. But so a lot of my students are interested in doing like art, like eye gaze, Art they can actually paint with their eyes. I don’t know if you could see this black and neon.

Oh, yeah, I see it one of my students, Made that with their eyes So doing artwork do it being an influencer. One of my students wants to do artwork and put it into hotels and do like hotel design. So it’s really trying to go with what is their passions? What do they like to do and how can we make that into a career?

One of my students would love to work in a flower shop with plants work with animals on a farm. Just like anyone else, you what is your passion and then how can we make that into something you [00:23:00] can do for a living that gives you purpose.

Marie Chindamo: You worked in this field for 14 years.

How does it impact you and your perspective on intentionality and being intentional and not leaving your success or quality of life to, to fate or chance?

Elaine Keuning: Yeah I think in the beginning it was. It was difficult to see how it’s not an easy life for the individual, but it’s really not an easy life for the caregivers, the parents.

And seeing that was, it was hard to come home to my life and then find joy in things, because I felt, I honestly, I felt guilty. I was like, here I am happy on the beach. And then, but I know that my Patients that I work with are now my family don’t want that for me, nor do they have that mindset at all.

And their lives are not all doom and gloom. They find joy within their own lives and go out and into the world [00:24:00] and do things with their their kids, despite the challenges. And I think that’s something I’ve brought back into my my business is you don’t stop working.

There’s a challenge you keep. Going and I do feel like this was my purpose in life was to help this very specific population and I’m not going to give up on them until every single one of them is cured and they don’t need me anymore. So I think just seeing how the families overcome, their challenges and their struggles and still find joy, it’s, It’s a lesson for me.

If there’s a little challenge or something I’m not just gonna give up or not do it. And, there, there are challenges with running your own business. Oh, yeah.

Marie Chindamo: And we’re going to get into that,

Elaine Keuning: as absolutely. Absolutely. And I don’t think I’ve ever regretted pushing through when it might’ve been easy to go, in a different direction.

Marie Chindamo: I can relate to some degree. I don’t know how much, about my history. And I do reveal this in my 1st, 2 [00:25:00] episodes, which will be released. I had a brother who was injured and suffered severe brain trauma at 13 and. He didn’t have the ability to communicate at all, like he was severely brain damaged, but he did wake up and go to sleep.

So you knew that he was awake, but you just had, there was no communication at all and through his earlier years, visiting him in the various hospitals that he was in. He never actually came out of a hospital. He actually lived until he was 42, so he was injured at 13 and then he passed away at 42.

But he was in the hospital, 29 years, different hospitals, children hospitals at 1st, and then into his adult years and other institutions. And when I used to see him regularly as a child. You would see all of these other types of children with these, debilitating brain injuries or other, dire situations.

And you’d go home and like you just said, you feel this [00:26:00] level of guilt you’re leaving this behind, especially one that’s my brother, just, you leave that behind and you’re like, why, why is this, why does this exist in the world? A right. Yes. And, It’s just how do you work with that in your mind and to your, actually to your point, it’s like little challenges in our, or little challenges in our life.

If you didn’t see this and put this in perspective, could be look like big challenges. Yeah, exactly. And I think I attribute a lot of my success, in my latter years to the fact that, perspective is everything. And you can see how people who have some severe physical needs and emotional needs have, they overcome with that, because that’s what they’re dealt with.

So here we are with all the blessings and, a lot of people get tripped up because they don’t have belief in themselves or they have a small inconvenience or obstacles are going to be there. And that’s why I started this podcast. It’s like intentionality is [00:27:00] everything. And the choices that we make.

Yeah. With the

Elaine Keuning: gifts. Appreciating. I think I’ve learned to appreciate the little things and the little moments and appreciate connections. more so with people that I had, whereas before this probably took them for granted. And also, like you said, the little challenges are much more approachable,

And not a big deal.

Because we know there are much bigger challenges out there in the world that you need to let those little things go. Yeah, and I it’s like you’re like woke to that. Yeah, life when you’re not in that world, because it’s definitely I feel like a world that I’ve been sometimes of those, the families like seeing how they’re living and how they’re functioning and then I have another world outside of that.

In my. everyday life, although I’m with my patients in my everyday life, let’s say sometimes off and, [00:28:00] hearing people complain about little things. It’s kind of like, yeah, off, like you don’t even know what it could be like. Yeah. I value what my patients and my students and the families have taught me.

Absolutely.

Marie Chindamo: Yeah, and having the cognition and not being able to communicate has got to be one of the most frustrating things. And they’re able

Elaine Keuning: to express that as well, because if you think about yourself when you get so upset or angry or if you’re in physical pain, because a lot of my students do deal with a lot of physical pain.

It’s hard to speak if you’re an able bodied person, it’s hard to speak in those moments. And then we’re asking them to use this very complex device with their eyes while they’re in this physical state and they can’t. So you see it escalate. And I think that’s it. I would be screaming too.

Yeah. Yeah.

Marie Chindamo: Yeah.

Elaine Keuning: Just screaming and [00:29:00] crying as well. Yeah. So yeah, you have to put yourself in. In their shoes sometimes and just remind yourself of what they’re dealing with and what we’re asking them to do and how hard that is.

Marie Chindamo: My hat’s off to you for being in the, being in the space that you’re in and being so persistent with it.

So let’s just shift to what, why did you launch your own business and you were working full time, I’m assuming for an organization, which provides security, right? It provides consistency. We all make those decisions. You, now you’re on your own, right? Yes, your own practice.

Talk, talk to us a little bit about how you made that transition.

Elaine Keuning: Yeah, so when you first graduate with an SLP degree, you have to work under a licensed credentialed therapist, I believe. It’s either, it’s six months to a year. I don’t exactly remember how long it is. And I was living with my parents at the time, very eager [00:30:00] to leave the nest and I wanted to move into Brooklyn with my friends.

So I took the first opportunity that came across, which was working for an agency in Manhattan that placed therapists. throughout the tri state area and they placed me in the Bronx and a very Not safe area in the Bronx.

I had no idea. I had barely left Long Island at this point. I’d never taken the subway. So I moved into Brooklyn and I accepted the position and I was on foot. Looking back, I had no idea. What was I? 22, 23 years old. What I was putting myself through. And I worked with very young kids, so I had like my giant toy bag, my backpack, and I You know, took the train into the Bronx and I went into these homes and the majority what I was working with was a lot of a lot of people that were not making a lot of [00:31:00] money, a lot of families that were, all in a very small apartment.

And the reason for the delay was because these children were not really experiencing and getting those early developmental Opportunities that they needed to thrive. That’s a whole nother thing that was very difficult to deal with. That was a culture shock for me because I had never been exposed to that before.

Because it was,

Marie Chindamo: because it could have been preventable in other words, Absolutely. Issue.

Elaine Keuning: Individuals from lower economic starting points are at a higher risk for developmental delays. Absolutely. They’re not getting the nutrition that they need.

They’re not going and getting the feedback from their parents because their parents might not be present all the time because they’re working all the time. So there was a few situation that was, and I loved that, it was needed, but it was definitely a shock.

Marie Chindamo: Yeah. Yeah. Of course, as a young woman, just starting out in the big world.

Yeah.

Elaine Keuning: And there were some situations that just made me think that this was not [00:32:00] a safe setting for me. I had, just walking around the Bronx, I’ve had bottles thrown at me. I’ve had kids. Chase me with knives. I’ve had pitbulls attack me and other dogs. I’ve had, gone into situations where the parents are doing drugs and the child is there.

And what do you do in that situation? And I’d go to my supervisors and I would say, I don’t feel safe. I don’t want to take this case anymore. Particularly the child that chased me with a knife. And I had to, smack him with a book and then run out of the home because the grandmother wasn’t watching him closely enough.

And they told me, no, you have to keep the case. And I I call my mom and my mom does work in the special education field. I was like, is this normal? Would you do this to one of your providers? She’s absolutely not. And I just, I heard from other people, like you, you can work independently.

You don’t have to work through an [00:33:00] agency. And that was the first time I heard that I thought I had to work through an agency. So that was like the light at the end of the tunnel. I was like, okay, I just have to stay here to get my credentials and then I can go and do my own thing. So that’s what I did.

I stayed until I got my credentials and I can work independently. And then I. I immediately put in my two week notice and I left because it was just, it was too much for me. How did you

Marie Chindamo: develop your own client base? Yeah. So that was

Elaine Keuning: the opportunity. So I worked at another agency and I met a provider that had met a mother that was looking for someone to learn that AAC method.

For their daughter with Rett syndrome. And she said, would you be interested in it? And, early on in my career, I would say yes to anything. I would say a yes person. Yes. You do everything that you can for opportunities. That’s right. And I knew nothing about AAC. I knew nothing about Rett syndrome, but I met with her and I told her, I don’t [00:34:00] know anything now, but I’m willing to put in the work and do what you can.

Need for me to be able to, work with your daughter. So she paid for me to go and do this training. I fell in love with that branch of my field, AAC, and she introduced me to the director of the Rett Center at Montefiore. And the director, we had a phone interview and she said, would you be interested.

And again, I was like, yes, I didn’t know what I was getting myself into, but I was like, I will learn I will do this. So she invited me to come to the hospital to see the clinic.

And I was like, I can do this. I can totally do this. I’ve never used an IE’s computer before, but I’m going to do this. So I told her, I was like. Yes, I can do this. So they gave me the IDs device. I took it home and I figured it out. I figured out how to use it, all the settings and then slowly took a lot of classes.

I went to more advanced [00:35:00] trainings on AAC. There was a lot of educators that had been specializing in Rett syndrome, and I would go and shadow them and see what they were doing. So if it’s taking like little things and just try taking skills, I was like, okay, that makes sense to me.

That makes sense to me. And just building my own skill base. And then the patients that would come into Montefiore had service mandates through their school systems. Again, throughout Manhattan and Brooklyn and Queens.

Elaine Keuning: So they’d come to Montefiore if you were like every six months, once a year, depending on how their health is. And then I would be their ongoing speech therapist in the home and their AT provider. And I just kept.

Through word of mouth and through meeting people through Montefiore was able to build my own client base and then decided to start my own business. You don’t have to have your own LLC, but but yeah, that’s what I did. I started my own business and worked with that client base under Williams speech and language pathology.[00:36:00]

The rest is history.

Marie Chindamo: First of all, it sounds like, you’re not that old. No, it was very, and

Elaine Keuning: that was. Yeah, it’s hard for people because I was like 24 and I’m coming in as a RET specialist,

Marie Chindamo: right?

Elaine Keuning: And I did, I had more experience just by knowing two individuals with RET than the regular SLP who probably don’t.

Once in their entire career would maybe work with someone with Rett syndrome or know of someone with Rett syndrome. So I got that a lot. You’re very young.

Marie Chindamo: The thing that comes to mind for me is a couple things. One, you said in the onset that you were working with a broad range and you very now shifted to this focused, Population which is important because many of us try to be too many things to too many people just in general in life.

Yes. And when you want to really hit your epitome of success, sometimes you have to go. What’s the 1 thing that can make the biggest difference? Yes. It’s just focusing on the one [00:37:00] thing until you can get through to the other side. That comes to mind for me. And the other thing, when you brought up the opportunity at Montefiore and, the director and it sounds to me like the work you do, there’s not a lot of people doing it.

Elaine Keuning: It’s very hard to find someone that has, first of all, that knows augmentative and alternative communication.

As a starting point because as an and as an SLP, it’s almost like to say I’m a doctor.

Elaine Keuning: But a doctor doesn’t do brain surgery. And gene therapies. And pediatric outpatient, they go and they specialize in something.

For an SLP, you get that broad range, but you’re not getting.

Specialty training. So when someone, will come to the clinic and you’re like, we need a speech therapist and she didn’t know anything about AAC it’s not uncommon. So what you really need is someone that’s willing to learn. And that’s usually what I’ll offer. Find someone that’s [00:38:00] eager that’s willing to learn.

That’s not scared off by technology because the therapy is heavily based in technology. And. Okay. I will train them to work with your daughter, whether that’s coming into the clinic or they’re hiring you privately to come into the home to train their team. And through doing that, now there are other people that are more aware of Rett syndrome that I would feel comfortable referring someone to.

And that’s within New York state. I feel like there’s a few in different states that would have. It’s even more experience than I, they’re not necessarily an SLP but you would work with that person more in a consultation capacity. It’s not like you’re ongoing person because no one comes out of school really even knowing what Rett syndrome is.

Oh yeah, there’s not a lot of people doing it.

No.

Marie Chindamo: And you’re saying the case is like one in every 10, 000 for females, right? That’s a pretty high rate.

Elaine Keuning: Yeah, in the tri state area, I would say there’s a pretty high density. It’s a, there’s a lot of big population [00:39:00] here compared to other places, but I would say any school district I’ve been to, they’ve at least had one student with Rett syndrome.

Marie Chindamo: Yeah. The other commonality that I heard you say, and I can relate to it tremendously when it comes to, carving your path to success is saying yes. Just I’m going to do this. I’m going to, I’m going to find a way to do it. I’m going to make it happen. That’s intentionality, right?

Not being afraid of, Oh, perhaps I have limitations or perhaps I don’t have enough knowledge. There are so many resources available to us to say yes to an opportunity.

and find your way through it is just so admirable. And it’s the difference maker for people that want to, really break through to the next level of success.

Elaine Keuning: I think it’s one thing saying yes. And maybe not acknowledging, like you might not have all the answers. I think that’s a big one too, is I’ll go, I go in many situations where I might not have the answer for you, but I’m going to.

Figure it out. [00:40:00] I’m work on it and I’ll come to you with a solution or a recommendation and I think that in the beginning that was difficult to do you never want to tell someone that’s hiring like you don’t know but also like You don’t want to You don’t want to give false information You don’t want to so I think that was big as well Like i’m gonna say yes, but i’m not always gonna have the answer but i’m gonna do my best on my end to figure out something for you.

And that’s where I’ve learned a lot as well and consulting with other people and what they think it’s a lot of trial and error. There’s things that I’m doing now where I wish I had implemented it earlier with my younger kids because I’ve never seen, someone with Rett syndrome.

Progress with their device like now is the time where I’m starting to get younger kids because all of my students now are teens and adults, and this is the first week where I’m going back and now I’m starting fresh with younger kids and I can take that knowledge that I learned throughout [00:41:00] their pathway and really implement it.

You’re constantly learning like you’re never done. There’s always new information out there and new methods and you have to be open to that. You can’t just be narrow minded and stick with one thing. And I think people in the AAC world that are speech and language pathologists that people get frustrated with are the ones that are like, no, this is the only way, like this is the only way to teach this.

And that’s never true.

Marie Chindamo: Yeah. And I’m glad you clarified that you’re absolutely right. You don’t want to fake it. When you say, yes, you want to be very transparent and okay, these are the skillsets I have. And we’re going to figure it out together. And making sure that you’re very transparent with that.

But you’re right. And someone said to me a while ago, and I don’t know how true this statement is, but just like in the medical community, they call it a practice. The doctor’s office. It’s a practice because it’s a practice. Let’s be honest. Of course, they’re highly educated and highly trained, but you’re continually trying on new solutions and you’re [00:42:00] understanding things in a different way.

Just like you mentioned from the beginning of the interview with RETS being originally thought as potentially autism and technology and science has now proven that it’s its own. It’s a completely different thing. So yeah and working in any field specifically, in a medical field or in a very technologically driven field like yours, change is going to happen all the time.

So talk, just share with us a little bit about how your core values influenced your work and the level of success you have and perhaps where you want to go from here. Okay. So

Elaine Keuning: I think. I’ve always been, I don’t want to say you have to be competitive in this field, but I’ve always been someone where you say you can’t do something.

I’m going to want to do it even

more.

Elaine Keuning: And I luckily grew up with a lot of coaches. And people in my life [00:43:00] that really pushed me from a young age, from the time I was in second grade, I was told you were going to be an athlete, and that’s going to get you into school.

And I went with that. I stayed on that path. I focused on my athletics and I think the mindset and the lessons I learned from being an athlete really instilled the tools that I needed to be successful in my job nowadays.

I think it was middle school. We read the book as a team who moved my cheese. Which is like very popular in the business world.

Elaine Keuning: But lots of lessons that someone that’s an athlete and you’re working as a team, understanding what type of person you are and how you approach challenges and how that can help support the group as a whole.

And so that type of like meta thinking, knowing like how I think and how I try to work through things and what my strengths personally are and how you can take that to be successful. These things [00:44:00] would stick with me where it’s it’s lonely at the top that has resonated with me.

It’s lonely at the top, because if it was easy, everyone would be doing it right. So putting in that hard work. There are things that you are going to miss out on you’re not going to be with a whole group supporting you all the way.

So I think that was the foundation I needed to be successful. And I still see a lot of that come through with how I run my business. Cause a lot of people that are interested in doing what I do specifically with specializing with Rett syndrome will ask me like, What does it take?

Like, how did you do this? And I’ll explain. And they’re just not interested in putting in that extra time and that extra work. Whereas it wasn’t even a question for me. I didn’t always know I wanted to be a speech and language pathologist. Like I said, I went to college as an athlete, my mind wasn’t even on coming out with a degree.

Marie Chindamo: And what was

your degree when you originally went in?

Elaine Keuning: When I originally went in, I wanted a science based degree because I wanted to make [00:45:00] my own makeup line.

Marie Chindamo: Okay, nothing wrong with that.

Elaine Keuning:

And I think I went to one biology class. I learned everything I ever knew about science in that one class. And I was like, okay, like this is not for me. And I, again, through my mother, so she’s in the field, she works in early intervention and CPSC, and she was like, come to the school and take a look at all the different jobs, and see what would be interested in.

And I was very overwhelmed in the the classroom setting. I was like, I don’t know how these teachers even focus. It’s so noisy. Like I would get very overwhelmed. But then I saw this person come in and she would take a student and be like, okay, come with me. And they’d go to a separate class and like work together.

And it was the speech therapist. And I was like, I like that. I want to do that. You can do one on one and then you put them back in the class and that’s it. And, But and then I fell in love with that coursework. It was an awesome mixture of anatomy, physiology different learning theories, and I absolutely loved it [00:46:00] and but it took a few years to figure out what I wanted to do, which is, I think, what a lot of people,

Yeah, and then I actually only had one elective class in augmentative communication, and So it wasn’t even like a whole and I think it’s different now, but back then it was like, and this is AAC and you would use a computer and this is what you would do.

And I was like, all so I really learned it after the fact. So it’s nice seeing a lot of speech and language theologists coming out now in the field, having a really good foundation in AAC and not having to be, introduce them to it. But Going back to what made me just. Be able to grow my business.

I really feel it was those foundations that I learned early on in my life of being in an athlete and having to put in the work and also focusing on doing the best that you can do. I think that was a big lesson that I learned is like focusing on your strengths and not comparing yourself to what other people are doing.

And Success will come if you do that. Don’t be [00:47:00] frustrated or worried that someone else is doing something else another way and finding success. What is your role?

Marie Chindamo: What’s your uniqueness, right? What’s your unique skill. Yeah. So can you just elaborate a little bit more when you say the success as an athlete specifically what were the parallels between being an athlete and focusing on physical success versus, intellectual or not to say that being an athlete doesn’t require intellect.

It does.

Elaine Keuning: No, I think it was as a business owner, more so not necessarily like striving in the field of speech and language pathology, but just being a business owner, you have to make Sacrifices. You have to put in extra work. You have to be willing to, not party all weekend so that you can get your billing in because you’re playing many roles.

So I think that that mindset of Oh, I have a game tomorrow. I can’t go out with my friends, or I have to wake up at 5am and go for a run, take a shower at school, go to school and then go to [00:48:00] practice. I was already used to putting in a lot of that extra work. And I knew what I was capable of.

And that was, I think what helped me with, My business, because it would be, taking a student that might be over an hour away, and being paid for 30 minutes, but knowing it’s a good opportunity, being able to see that when you put in the work that there can be takeaways from it that can help you with success in the long run was something that I learned through my early career as an athlete.

Yeah.

Marie Chindamo: I’m sorry. Go ahead. Finish your thought.

Elaine Keuning: And also just saying yes to things like to excel I played on the Irish national team. So someone’s do you want to go to Ireland and try out? Yeah. What sport? What sport? I was lacrosse. Okay. Okay. We’re being invited to try out for the U S team.

Like I knew I wasn’t going to make the U S team, but it would be a good opportunity. So let’s do it. Am I scared? Am I stressed? Yeah. Yeah. But [00:49:00] in the end, it made me. a stronger person mentally. So I think I carried that into my business.

Marie Chindamo: Yeah. Yeah. A couple of things I’m thinking of as you say that first off, there was a podcast I was listening to some time ago and I’m going to have to put it in the show notes when they talked about the science behind doing something you don’t want to do.

Yeah. And how the anterior mid singular cortex, MCC is grows in your brain. And when you do something that you don’t want to do, because it just creates these new pathways. It’s pretty interesting. It’s a pretty interesting science. And I can relate because good part of my entire early part of my life up until just recently was doing things you didn’t want to do, and that’s the choice versus leaving things up to chance, right?

It’s making those decisions. Choices of, Hey, I’m going to not go out because I have commitments and I’m not going to blow off my commitments. You can [00:50:00] interpret that so many different ways, but you’re absolutely right. That’s the differentiator that’s why success is for the select few.

High levels of success, right?

Elaine Keuning: Yeah. And I don’t mean

to say I’m in a world, but I, I don’t. I have a very small friend group. Like I’m not going out all of the time because you can’t, go do at least for my business, it’s a lot of time with my patients, but it’s also a lot of time.

Driving and getting there and a lot of other people in my field probably wouldn’t accept the cases that I accept knowing how far it is to get there, but I know that I can’t work with the same population of students if I don’t travel. My business falls apart. A lot of people like, Oh, you drive so much.

Why don’t you just, work on Long Island? There’s not a lot of kids with Rett syndrome on Long Island. It wouldn’t make sense for me to just stop that after all the time I put into it and then start working with a totally different [00:51:00] population. And, it’s afforded me a lot of work.

opportunities. Like now I have clients in California and I go to California once a year for a week to work with that population. I’ve been to Brazil to talk to the Rett Syndrome Federation there and work with a family. So it’s taken me All over globally within the U. S. And you learn lessons from all of them.

And that’s what made me successful is saying yes to those things. I didn’t want to be away from my family, for a week. No, but that’s what I needed to get an edge to, to get, more specialized in my fields.

Marie Chindamo: Yeah, and life has seasons too, some people are okay with that for till death It’s just work, work, work, and they don’t stop and sometimes you just go through seasons where you’re going to just really put in the time now and then maybe you take a couple of months and you take your foot off the gas a little bit, right?

To recharge, [00:52:00] replenish and then, go back with a fresh, more More rested recuperative perspective. Yes. Yeah, for sure.

Elaine Keuning: Yeah. And I think that’s the season I’m in now after doing it for this long is I’m, I likely wouldn’t go across, to another country to, I might, but I’m not accepting those as much.

And also I can’t do it as much because I have my core client base here. So if I’m going somewhere else. I can’t see those patients, but technology COVID, although it was devastating to the world, also opened up opportunities as well, being able to do therapies virtually. Over the summer, I had someone reach out and I did a consultation via zoom with someone in Italy.

Yeah, and that it was very successful, and then you can do things more regularly via zoom and using technology and stuff like that. So that [00:53:00] has opened up my practice as well.

Marie Chindamo: Did you have to learn Italian

For that client?

Elaine Keuning: No, luckily we had, so it was weird. It was someone. here, an educator would go over to work with this student. And she, through again, word of mouth, a lot of my referrals are just through word of mouth knew of me and asked if I would be willing to, do a consultation with this family.

And and I said, yes, sure. And she was able to translate For mom, because a lot, a lot of the terms and stuff that we use here do not resonate in another language. So she was able to like, re redefine a lot of that terminology that we use here in the AAC world. And And yeah, I think it was very effective.

We were able to get her onto a more, we call it a robust language system because she was very she didn’t have a lot of vocabulary on her page set and we needed more. So we were able [00:54:00] to think through like, how can we give her more in an organized, systematic way? What resources do we have? So yeah, we were able to do that over zoom.

Marie Chindamo: Wow. That’s fantastic.

Elaine Keuning: Yeah.

Marie Chindamo: Your why is very compelling. The reason why you’re doing what you’re doing is innate in everything you say. It’s just to help others to see a difference in the quality of life. Just to be attached to these vulnerable people that need so much and being able to make a difference is just, it’s, it speaks so loudly and kudos to you for that.

Kudos to you. I

Elaine Keuning: wanted to have a job that where I was, I could go home and know that I, Helped someone. I didn’t know that what that was, but I was just like, I want to be able to do something where I can go home and feel good about what I’m doing. And for the most part I get that a lot, like student to student.

It’s like you sit in two hours of traffic, but I sit down with my student and they smile at me and I’m like, okay. [00:55:00]

Yeah. It’s

Elaine Keuning: worth it. It was

Marie Chindamo: worth

Elaine Keuning: it.

Marie Chindamo: What do you see as your next chapter? Yes. Something taking it to the next level. What do you see?

Elaine Keuning: I’m really interested to see how these gene therapies might open up more communication for someone with Rett syndrome.

We don’t know what a cure looks like, especially for someone that has been affected by Rett syndrome. For the majority of their life. I don’t think it’s realistic to think that it’s a traditional what we think of a cure, there will still be some need for therapies and interventions, but we might be able to go further.

With it, we might then be able to do job training and really look into maybe secondary education for them and going to college. And I think this is a natural trajectory for me because my students are getting older. I want to help them in that post secondary. Life,

Because I feel [00:56:00] like there’s a lot of support in the early childhood area and we know what we need to do, but once you leave school, it’s very different, where are the funding sources from what opportunities are there for you.

So that’s what I’m interested in and moving towards and maybe, starting some. Classes for someone with Rett syndrome, like a communication class. I

Marie Chindamo: And we do adult classes in other words. Yeah. Yeah. Yeah. Is there any type of charitable organizations that, that are specifically geared to helping raise money for research and yeah,

Elaine Keuning: that’s the Rett syndrome research trust is probably the main 1 there’s a lot of information on their their website about I think it’s rsrt.

org. I can confirm that after the

okay,

Elaine Keuning: I’m pretty sure that’s what it is. So they have all of the different pathways that science is going to try to cure Rett syndrome. And that’s really focused on getting [00:57:00] money to get a cure and get more trials going. So it’s not just gene therapy there.

They’re looking at many different ways. The gene therapy just happened to get the green light to be able to push a little bit faster because it is slow moving, these phase-one trials, there’s been a total of three people that have received the treatment and the ages are very isolated, between three and six or three and 10.

Don’t quote me on this, but it’s like a very short span of age. And then maybe a little bit older, 20 to 22. So the faster we can get these going, the more kids we can get treated. There’s another organization called Rett syndrome, Rettsyndrome. org, and they’re focused more on like therapeutic advances and treatment.

Not so much the the gene therapy research.

Marie Chindamo: What about access to the devices and all of that? Do most homes or most households have ability to [00:58:00] access that? Or is there socioeconomic factor involved?

Elaine Keuning: Luckily Medicaid and private insurances will.

Cover those devices because they are expensive. They’re like $22,000 devices. So the average or most families cannot pay for that out of pocket, nor should they have to. So insurance there are requirements for it. You have to get a lot of evaluations and stuff. And that’s my primary role at Montefiore to provide those assessments, to be able to get insurance funding for the devices.

But luckily, I think we’ve had almost 99 percent success rate in getting the devices approved through insurance.

Marie Chindamo: Awesome. Good. Okay a couple of questions final questions for you, but before I go to the final questions, where can our listeners find your services? Where will be the best way to connect with you?

Elaine Keuning: Yeah, so I have an Instagram account. I believe

Marie Chindamo: [00:59:00] yeah, it’s okay. You know what? We’ll put them in the show notes. Yes. The show notes. And your actual organization your practice is William speech and language pathology LLC. We’ll put everything in the show notes and how to contact you.

Should someone have an interest in a going into the field, I would assume you’d be, you’d Yeah, so I’ll provide,

Elaine Keuning: I will provide you with my email. That is generally what I give everyone. I don’t have a Montefiore email. And I, so shameful. I don’t have a website.

Marie Chindamo: But I do have an Instagram. It sounds like you don’t really need one.

You’re in demand, right?

Elaine Keuning: majority of my referrals are word of mouth. And I’m at the point where it’s very, I can’t take on like a full time new student or patients more like a consultation ongoing service that way.

And I don’t, Like telling people, no,

[01:00:00] so I felt like starting a website where it looked like I was looking for new patients would just open me up to just having to tell a bunch of people. No. So that is the reason I did not start a website. I would like to have more of an informative, presence, be able to just advocate for someone with Rett syndrome and provide resources.

So I’m looking for ways to put some of the resources that I use to make them more readily available for people. That is also to come something I’m looking into doing. But but yes I don’t have a website, so everyone can email me.

Marie Chindamo: Okay, good, So a couple of final questions. I’m going to dig deep for these. You seem such like such a confident person. Like I’m going to figure this out. I’m going to make it happen. I’m going to say yes.

Can you share a moment when you feel unsure about the choices you were making and how did you push through that uncertainty?

Elaine Keuning: Yes. it happened more frequently when I was younger, [01:01:00] obviously when you’re younger, you don’t have that foundation to stand on and the confidence that what you’re doing is, what you should be preaching.

But I believed strongly in what I was preaching, so that helped. However, there is always someone that is going to tell you what you’re doing is wrong. That I’ve been called very, um, what was the word they used? Eccentric in my practice, in my practices and my methods, because it is not the classic way that we were taught to implement augmentative communication.

It’s not the way that you implement it for someone with Rett syndrome. Although the field is shifting and how we provide an individual with the language, it’s more Giving them all of the words that they need versus restricting what they can have and choosing what you’re going to let them say.

So there has been a shift. But when I first started, it was more like restrictions on what they can say. You have to prove to me you understand those words before I’m going to give you more. [01:02:00] And that was the mindset of the general population of speech and language therapists doing AAC. And here I am coming in saying.

No, this is how you should be doing it. So that was challenging. But again, I felt confident what I was doing and the more that they implemented it and saw the change in the student. I think it made an impact, not just for the student that I was specifically in that maybe school to work with.

It started to change the mindsets of the therapist of working with other kids. In that school. So it does happen often, especially when you have someone that is just as confident in their approach and it’s conflicting with your approach. And what I found works is being a little bit more collaborative of being like, I see your side and this is my side.

Let’s try to work together versus. Telling someone they’re wrong. So that’s just come with time, not going into a [01:03:00] school and turning everything upside down, but saying I see what you’re doing. Let’s make small, effective changes to try to change their mindset has been a lot more successful than, coming in.

Like with a sledgehammer and just being like, everything you’re doing is wrong.

Marie Chindamo: Yeah. Yeah. People don’t need to be told that as the T there’s a term I heard a long time ago. It’s don’t call their babies ugly. Yes. They worked hard to get where they were. They work hard to do what they’re doing.

And sometimes you have to have a little more finesse about, Hey, it worked for you. It worked for me. up until now, but let’s just look at a different approach. And now

Elaine Keuning: there’s been a shift, like I’ll get on a call with someone and kind of explain how we recommend working with someone with Rett syndrome.

And they’ll say, I really thought that, I just needed someone to tell me I was on the right track. So the mindset is shifting. I’m getting less resistance to the methods, but in the beginning it was hard being very young and And having someone, that has more experience, you’re wrong was not easy.[01:04:00]

Marie Chindamo: Looking back, then, is there a choice that you would have made differently?

Elaine Keuning: No, I don’t believe in, looking back and saying, I shouldn’t have done that. I think you learn from everything. There are takeaways from everything. And I truly believe if I changed anything, I wouldn’t be where I am right now.

And I couldn’t be happier. I, and I do want to stress that I was. Given many opportunities from people that believed in me and I would not be here if they did not support me and believe in me in the beginning. So I don’t want anyone to think I did this all on my own, like absolutely not. So now I wouldn’t have changed anything.

Marie Chindamo: Awesome. Yeah. And you’re right. You have a tribe. We all have to have people in our lives that are going to, even if they’re standing on the sidelines cheering you on. It’s just no one does it completely alone. And if people think that’s the way it works, [01:05:00] it doesn’t.

It doesn’t

Elaine Keuning: because there are moments where I was like, wow, I wish I didn’t let that moment happen or something escalate, but I wouldn’t have had the perspective I have now to not let that happen again. If it never,

Marie Chindamo: yeah. Yeah. No, I am a firm believer. Yeah, I mean, sometimes we ask the, and I’ve heard a lot of interviewers ask interviewees, what would you say to your younger self?

Give yourself advice or what would you do different? But it makes you who you are, right? It just, all those decisions, all those choices make us who we are. I, for me, it might be just, yeah. Don’t stress as much perhaps. Yes.

Elaine Keuning: Yes. Stress is also a catalyst for success, high levels of stress is not healthy for you, but yeah balance, I think, but I think if I had more of a balance when I was first starting my.

Business, it wouldn’t have been as successful. I don’t think it’s possible to have balance all of the time. I think it’s [01:06:00] something that you can strive for to come back to a balance in your life, but I don’t think it’s possible. There’s times where you’re going to have to put more of your energy into something else and let other things go to be able to advance that aspect.

Marie Chindamo: The thing is for balance to even be somewhat even remotely in your world, it has to be that whatever you’re doing as a service in the world has to bring you joy and fulfillment.

Right? And, to some degree, and they’re going to be days and months that is less joy and fulfillment. And they’re going to be some that are just so over the top or that one moment, like you said, where you’ve had these connections and progress with one client that just made up for the 10 hours of commuting that week.

Right. Yeah, finding your purpose and living that purpose and finding ways to ensure that it continues on. And recognizing it and good for you that you recognize it earlier in your career. So very big. Yes. Great. I am so [01:07:00] pleased and honored that you accepted my invitation to talk to me today and I’m really pleased that it turns out to be Rett Syndrome Awareness Day.

So that’s even more, more fascinating. Actually, what else is today? Today is my brother’s birthday, the brother that passed. Okay. So in honor of him, in honor of him. Yeah. Obviously his was a brain injury through an accident, it certainly woke up a lot for me anyway, a lot of, perspective on being grateful.

And understanding that, things don’t come easy and keep things in perspective and, hats off to you for serving a community that really needs you and absolutely probably adores you because you’re lovely.

Thank you again. And like I said, I’ll put all the information in the show notes for anybody that’s interested in getting in touch with you or contributing or learning more about Rett syndrome. That sounds great.

Elaine Keuning: Thank you, Marie.

You’re welcome.

Thank you so much for listening. I aim to provide you motivation and support to consciously craft the life and career [01:08:00] you desire. Check out the show notes to be sure you’ve captured all the golden nuggets. Visit ProTilly. com to set up a complimentary call with me or get free resources and very inexpensive help from our success university.

Awaken your superpowers and achieve what your heart desires. If you gain value from today’s episode, subscribe to Apple Podcasts and DM me on LinkedIn to let me know how this episode has helped you. Be sure to listen next time to hear more strategies for simple and powerful choices.

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Books or Resources Mentioned:

RettSyndrome.org

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For BuzzSprout:

EP008] Through the Eyes of Others: Communication and Perspective in a Silent World

– Guest Elaine Keuning, Speech & Language Pathologist

00:00 Welcome to Choice, Not Chance

00:27 The Importance of Communication

02:07 Introducing Elaine Keuning

04:41 Understanding Rett Syndrome

07:56 Challenges and Success Stories

29:21 Launching a Private Practice

34:45 Mastering AAC Devices

35:15 Building a Client Base

36:07 Specializing in Rett Syndrome

39:08 The Importance of Saying Yes

42:25 Core Values and Success

43:13 Athletics and Business Parallels

47:08 Challenges and Triumphs

51:03 Global Opportunities and Technology

55:11 Future Aspirations and Gene Therapy

58:44 Final Thoughts and Contact Information

Have a question/comment or just want to chat? Email me at [email protected]

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For LinkedIn

EP008] Through the Eyes of Others: Communication and Perspective in a Silent World

– Guest Elaine Keuning, Speech & Language Pathologist

Highlights from this episode:

00:00 Welcome to Choice, Not Chance

00:27 The Importance of Communication

02:07 Introducing Elaine Keuning

04:41 Understanding Rett Syndrome

07:56 Challenges and Success Stories

29:21 Launching a Private Practice

34:45 Mastering AAC Devices

35:15 Building a Client Base

36:07 Specializing in Rett Syndrome

39:08 The Importance of Saying Yes

42:25 Core Values and Success

43:13 Athletics and Business Parallels

47:08 Challenges and Triumphs

51:03 Global Opportunities and Technology

55:11 Future Aspirations and Gene Therapy

58:44 Final Thoughts and Contact Information

Show some love and FOLLOW!

Listen on Apple: https://podcasts.apple.com/us/podcast/choice-not-chance-simplifying-success/id1781935770

Listen on Spotify

https://open.spotify.com/show/1PcvRD7AkA5P9EBzmC06D8

Listen on AMAZON MUSIC

https://music.amazon.com/podcasts/a128552b-0a97-44a9-90b6-4be182fe6c21

Listen on PODCHASER

https://www.podchaser.com/podcasts/choice-not-chance-simplifying-5909135

For Facebook

EP008] Through the Eyes of Others: Communication and Perspective in a Silent World

– Guest Elaine Keuning, Speech & Language Pathologist

Highlights from this episode:

00:00 Welcome to Choice, Not Chance

00:27 The Importance of Communication

02:07 Introducing Elaine Keuning

04:41 Understanding Rett Syndrome

07:56 Challenges and Success Stories

29:21 Launching a Private Practice

34:45 Mastering AAC Devices

35:15 Building a Client Base

36:07 Specializing in Rett Syndrome

39:08 The Importance of Saying Yes

42:25 Core Values and Success

43:13 Athletics and Business Parallels

47:08 Challenges and Triumphs

51:03 Global Opportunities and Technology

55:11 Future Aspirations and Gene Therapy

58:44 Final Thoughts and Contact Information

Episode link/Show notes:

Listen on Apple: https://podcasts.apple.com/us/podcast/choice-not-chance-simplifying-success/id1781935770

Listen on Spotify

https://open.spotify.com/show/1PcvRD7AkA5P9EBzmC06D8

Listen on AMAZON MUSIC

https://music.amazon.com/podcasts/a128552b-0a97-44a9-90b6-4be182fe6c21

Listen on PODCHASER

https://www.podchaser.com/podcasts/choice-not-chance-simplifying-5909135

For Instagram

EP008] Through the Eyes of Others: Communication and Perspective in a Silent World

– Guest Elaine Keuning, Speech & Language Pathologist

Through the Eyes of Others: Communication and Perspective in a Silent World

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