EDB Ep31 Changing Lives Through The Special Olympics Karlyn Emile

Changing Lives Through the Special Olympics, with Karlyn Emile | EDB 31


In this episode, Harold Reitman, M.D. speaks with Karlyn G. Emile, MPH, CHES, director of South Florida Healthy Community for Special Olympics Florida. Karlyn discusses the amazing work she does encouraging healthy life strategies, and the important outreach and support offered by the Special Olympics.

For more, visit the Special Olympics Florida website: www.SOFL.org

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HACKIE REITMAN, M.D. (HR):

Hi, I’m Dr Hackie Reitman, welcome to another episode of Exploring Different Brains. Today we’re lucky to have with us Karlyn Emile. Karlyn is — I want to read this to make sure I have it right. She is the site director for the South Florida Healthy Community of Special Olympics, Florida. Welcome Karlyn, thanks for coming!

KARLYN EMILE (KE):

Thank you for having me, it’s a pleasure.

HR:

Well it’s been a long time since we met out at the AADMD meetings at the Special Olympics when Tim Shriver, the Chairman of the Special Olympics was given that great keynote he gave and I was very fortunate and honored to be giving a keynote that day. Well that was a great day and meeting you and your colleagues out there and seeing all the great work you’re doing. So why don’t you introduce yourself to our Different Brains audience here.

KE:

Okay, as you’ve mentioned, my name is Karlyn Emile, I’m the site director for Special Olympics Florida Healthy Community. I’ve lived in South Florida for the past 26 years. I graduated from Florida International University in 2011 with a Master’s in Public Health, specializing in health promotion and disease prevention. I am currently in a Doctorate of Health Science program at Nova Southeastern University. I hope to graduate in the fall and as I said, I’m the director for the South Florida Healthy Community, I’m very happy to be working with the population of intellectually and developmentally disabled individuals and I always try to do the best that I can and take part in interventions and activities that will help to enhance their lives.

HR:

How did you get into this line of work, this great work that you do?

KE:

Okay after I graduated from Florida International University in public health, I wanted to go abroad and teach individuals in developing countries about health promotion and disease prevention. That’s all I wanted to do, but after considering it, I stumbled upon the fact that there are individuals right here in the U.S. who do not know how to promote their own health or avoid many avoidable diseases, the IDD population, so in 2013 when Special Olympics gave me the opportunity, I jumped on it. I can remember back when I was in school the idea of public health tailored to IDD population was not even part of the lexicon. We never discussed anything like that. They were not part of the minority populations or anything, even with all of the health inequalities that exist. So I’m glad to see that things are slowly progressing and I’m seeing more and more interventions being done, more research is being conducted, there is like more — people are taking more stakes, more stake in this population and there’s even a textbook that was written titled: Health Promotion for Individuals with Intellectual and Developmental Disabilities by Dr. Taggart. He was at the AADMD conference too. So as I’ve seen that’s the one and only textbook that’s been written on this population, well to promote health and wellbeing of this population so I’m glad to see the field is headed in the right direction as far as the IDD population is concerned.

HR:

That’s one of the reasons we started differentbrains.com is to get all of these different kinds of brains, all of the different neurodiversities kind of in one friendly tent if you will. Now where did you grow up?

KE:

I grew up in Haiti. I spent my first eleven years in the Islands then my parents migrated to New York and four years later, we ended up in South Florida, everybody comes to South Florida.

HR:

I think it’s great you’ve chosen to help so many others who have these problems. I’ve been trying to find more in the literature about neurodiversity within the minority communities and I know there’s a lot of cultural differences where it’s not cool to say, you know I have this problem or my brain is different, and it’s something in our entire society that we need to change, hopefully we will get the President of the United States to wear a shirt that says, “my brain is different.” Have you been back to Haiti much?

KE:

Yes, since 2009 I took parts in several medical mission trips twice a year to Haiti. We would provide primary health care to a bunch of individuals in rural areas of Haiti. I would teach them about health promotion, it was like a dream come true, but when I joined Special Olympics it kind of shifted my focus, but the desire is still there. I want to reach that population back in my home town whenever I get the chance.

HR:

I have to tell you, I had an eye-opening experience out in Los Angeles with the AADMD with the Steve Pearlman and the people who founded those, doctors and dentists for the developmentally disabled and with Tim Shriver and we went and toured the medical tents that were set up over at USC and I was with these athletes from all over the world whose brains are a little bit different and there were a bunch of different types of different brains. I think in the American lexicon we think of it as just Downs Syndrome, but there was a tremendous amount of variations and autism and all different types, but I was with these young athletes, it’s amazing how they got set up to get their hearing tested for the first time in their lives from 100 different countries, to get their eyesight tested, but not only tested, right there on the spot, the good people of the Special Olympics and the AADMD made sure that they got fitted right there with eyeglasses and hearing aids. I was comparing aids to some of the youngsters there, and I said to Tim Shriver, you know I didn’t realize the Special Olympics is just a front to deliver good health care to 100 different countries and that’s what it is. You know and I just spoke out in Chicago to the Special Care Dentistry Association and the iADH the international association that take care of the developmentally disabled and I met people from all over the world. I met one woman Reena Kumar who singlehandedly put together 342 medical and dental schools to provide the care for all of the Special Olympic athletes all across India. It’s amazing.

KE:

I met her.

HR:

She’s quite the individual. People like you who choose to dedicate themselves to helping others and I tell all of our young people here any of them who listen that if you can figure out — first figure out what you’re passionate about and then learn how to make a living at it and help others at the same time, that’s the trifecta. So Karlyn, what are the parts of the mission statements, I don’t mean verbatim, what are the parts of the mission statement of the Special Olympics that really resonate with you?

KE:

Well the mission statement for Special Olympics is to offer sports training and competition and a variety of Olympic type sports to individuals with IDD, they help them to develop physical fitness, demonstrate courage, build friendships with their families in the community and they added the Special Olympics health component that’s what you saw where we screen individuals now in eight different discipline, health disciplines. That’s exactly what we do in South Florida, that’s the program that I oversee. We have eight health disciplines that range from mental health, hearing, vision, dentistry, podiatry, health promotion, sports physicals, and physical therapy. So what resonates the most with me is the health aspect because I felt like you know prevention is way better than cure, what they say, an ounce of prevention is worth a pound of cure, so teaching this special population about how to prevent illnesses and promote health means everything to me, so that’s really what resonates with me.

HR:

That’s fantastic. You know another thing that happened when we were out there at the Special Olympics in Los Angeles, was Tim Shriver and he said, “you know today is one of the most important days ever in the Special Olympics because they were being covered not by 60 minutes, not by 20/20 but by ESPN, as interesting sports with competition with people showing courage and everything else and it was a general public interest, and that’s what we have to do is just mainstream this so that everybody who’s got an intellectual disability, or a mental disability and they’re all coalescent now. As we’re airing this today, as we’re filming this today, rather, Sandy Weill who’s just made a tremendous donation of many millions of dollars out in California to get the mental illness under the same roof with the neurology and the intellectual disabilities and that’s what we’re trying to do with differentbrains.com, too, because the wiring in the brains is different, we all have neuroplasticity so we want to get the resources out there and we want to get the positive rewiring of the brains out there and get everyone to help each other out, just like that spirit I saw with so many different organizations out at the Special Olympics. Who are some of your partners here in South Florida?

KE:

South Florida, we have many key agencies that serves the IDD population such as Agency for Persons with Disabilities, United Cerebral Palsy, Ronald McDonald Training Center, the Adult Parks and Recreations have department that takes care of individuals with IDD and the list goes on and on.

HR:

The list goes on and on, that’s great to hear. This is an odd question maybe, because — but I’m just wondering, what percentage of the people in the Special Olympics that you serve, the clients you serve do you think are neurodiverse, when you do all of these health promotions and everything?

KE:

Over the years I would estimate that about 45-50% are on the autism spectrum disorder, some of them are mildly impaired, while others are more profoundly impaired so we do see some behavioral issues sometimes, some of them have lower learning abilities but some of them are geniuses so it ranges and it’s a pleasure to work with all of them. They each bring something different to our classes, to the setting, to what we do.

HR:

And the Down Syndrome obviously makes up a big —

KE:

Yeah Downs Syndrome, Fragile X syndrome, we see a lot of those but a lot of individuals on the spectrum.

HR:

What are some of the biggest challenges that you and the Special Olympics in South Florida face?

KE:

I would say I will keep it within the realms of what we do which is teach individuals about healthy behaviors, physical activities, social wellness, coping, stress coping methods, so I’ll keep it within those realms. The challenges come when we have to teach those with lower cognitive abilities. We have to use more pictures, more props, more sensory items so they can grasp, because I don’t think anyone is incapable of learning, and they do. They go home, even if they’re non-verbal. They tell their parents: I don’t want this or that. I want to eat this, that, so that’s a challenge and of course if anyone becomes disruptive or you know violent, we don’t see a lot of it, but we do see disruption, that’s a little challenging but I always tell the instructors, I instruct them to stop teaching activities when someone becomes disruptive because something is going on beneath all of that, so they’re supposed to talk about the problem that’s upsetting them and sometimes they just want somebody to listen to them.

We hear so many stories about my caregiver found another job and left the group home so that’s why I’m acting out. Well they don’t say it like that, but we kind of conclude that’s why they’re acting out. My roommate is bullying me. We see so many issues like unrequited love, I like this person, they don’t like me and that’s another huge challenge for me, and I don’t know if that’s a challenge for Special Olympics yet, but a lot of them reported that they want to be in relationships, intimate relationships and it’s very hard to kind of scratch the surface with the parents to say, “you gotta make provisions for Johnny to maybe go on dates, have friends, make provisions so they can have a normal life,” so that’s something that we’re aspiring to get to, but a lot of them are miserable, because they want boyfriends, they want girlfriends and they get them anyway, they just don’t tell people about it, so I’d like to get to the point where I could teach them how to do it the right way. We do have a social wellness that teaches them to keep your hands to yourself, be kind if you want to keep friends, you know how to avoid predators online if they have Facebook and other social media pages, so that’s a big challenge, they want to be married, they want boyfriends and girlfriends.

HR:

And they want friends in general, too and socialization is a problem. The internet remains that double-edged sword you know with so much potential and so much danger at both ends of the spectrum there it’s hard. Could you tell us some specific success stories you’ve had or some stories where you felt you really made a difference?

KE:

I always share this story about Rebecca, back in 2014 and she —

HR:

And this is not my daughter Rebecca, this is a different Rebecca. And how old is Rebecca?

KE:

She’s in her late 40s. But she looks great. You couldn’t even tell she’s 40 something. Rebecca joined the nutrition and wellness program, our health and wellness program back in 2014 and she weighed 185 and she’s about 4’9 but what was — obviously she’s morbidly obese but the concern was that when I looked at her chart, she has a heart issue, a heart problem so then when we have lunch together then I would see what the lunch is consisted of, meatball sandwiches, nice dessert, so then I knew she couldn’t continue to eat that way at her height and weight, and with the heart problem so we introduced her to fruits and water and she said, “I don’t like fruits, I don’t want to eat fruits.” Then we ate it so she could see that it’s cool to eat fruits. She started tasting the fruit and still she would come to school with her lunch bag with less than healthy options, so we sent something — I work with a lot of interns from the various universities and colleges that we’re affiliated with so I told the interns to put together a nice package to send home to mom and dad so they can learn about what high BMI means, what high cholesterol and stuff, what heart disease and you know what can happen, not to scare her but to kind of teach them, then we got to go to the YMCA to exercise with them on a weekly basis, I remember she didn’t even want to walk, but after a while, she would be going, round and round and round and round at the YMCA, and her parents after they got our notes, wanted more healthy recipes and stuff like that, and then they followed what we told them and Rebecca lost 22 lbs.

So you know that’s a story I like to share. It’s not about the weight loss, but it’s about the behavior change and how it took the whole discipline of people, like a group of people to get together to rally around her to make sure that she lost the weight. And other success stories are how people come into our programs and they learn about, not only healthy behaviors and how to hydrate themselves on a daily basis, but we do teach them about social issues, how to cope with stress, how to talk about things calmly, and we do have pre and post anthropometric tests that we do after physical programs and learning acquisition tests that we do after social in health education programs and the results are always favorable so we have a lot of success stories a lot of them — so you know they’re happy for what we do. They love the interns who come around and work with them because it’s the interns from the different fields that teach them and engage with them, so they feel accepted, like they have friends, you know they feel loved and they like that a whole lot, so I would say those are some of the success stories.

HR:

That’s great you know the story of a young woman, not so much losing the 22 lbs., but getting into a healthy lifestyle and eating a good diet which you’ve heard in at Different Brains and Exploring Different Brains, Dr. Derrick MacFabe and some of the others talk about the way the neuroplasticity, the brain re-wires itself according to the flora and the microbiome that’s in your gut, diet is such an important thing, so it’s not just the losing weight, it’s proper diet, nutrition, activity, exercise and lifestyle and the story that Karlyn tells about this woman in her 40s who is changing her behavior, changing her lifestyle, changing her diet, all in a positive way, and this comes under the tent of healthy community and health promotions and education. Another very inspiring thing that Karlyn what you just said, is very inspiring, even among the non-verbal, they learn and they’ll go home and say I don’t want to eat that I want to eat that. It’s great stuff. What are some of the charitable services in general, that the special Olympics offers?

KE:

All of our sports programs and all of the health programs are free of charge to everyone that we serve, so as I mentioned before we have consumers from Agency for Persons with Disability, United Cerebral Palsy, some ARC, we work closely with them, a lot of key agencies that serves this population were affiliated with and all of our services are free of charge to them.

HR:

That’s great. You’re going to continue to do this, because you love doing this Karlyn, don’t you?

KE:

I really do, I really do.

HR:

That’s great. What’s one thing you might tell our Different Brains audience that they might not be aware of healthy communities and the Special Olympics?

KE:

In the beginning when I started, a lot of my colleagues said, “wow I commend you for wanting to do this, but it’s going to be virtually impossible to teach the IDD population about health promotion and disease prevention,” so I’m glad to say that statement was proven to be a myth and I have the pre and post data to show that they did learn this, they did lose that, they did change their habits, so individuals with IDD or different brains can learn anything as long as you take the time to teach it to them. I had a group of nursing students come and teach adults at the center where I am about how to do CPR. You wouldn’t believe after an hour, many of them were able to repeat the steps verbatim and actually go through the whole process of doing CPR, and you know I’m confident to know that even if they don’t do it perfect, even I don’t know how to do CPR perfectly because I don’t do it every day. I mean I know the steps, but when you get to the actual process it’s different, but if you know let’s say Nicole could see someone in an urgent situation and she would drop and do CPR, she can potentially save someone’s life, so that really stood out to me and I just feel like if you take the time to teach individuals to do anything they can do it. They can accomplish anything, learn anything.

HR:

Very inspirational. Now for our Different Brains audience out there, some of the people who might want to be like you, be like Karlyn Emile and go into this area to serve others and have a great time doing, what kind of educational path do you recommend that they take? You’ve had an exceptional educational path. What, let’s say a high school young woman or a young man is listening this, or viewing this or reading it on the transcripts, or listening to it on the podcast, or looking at the captions as they watch the videos because we’re all accessible here at Different Brains, what advice would you have for them?

KE:

I don’t think there’s a specific field that you got to go into in order to serve this population. You can serve them in anything that you do. As I’ve mentioned, I work with interns in various health fields, even media. So there’s a young lady, she just got her degree in the School of Journalism and Mass Media at FIU, she started volunteering, then I had her do campaigns for me, Facebook campaigns and videos and then I gave her a part-time job to teach because she does it well. Then she tells me that, “I want to use my degree to promote/create awareness in this population: media. So you know social workers, doctors, health promotion as I said back in my days, we didn’t learn about this in school, we briefly touch what special needs is, but not interventions tailored to this population. I read a lot of articles, one written by Matt Holder from Special Olympics about how the schools are not exposing students to this population, so when they get into the field of practice, they’re ill prepared to deal with them.

HR:

Well absolutely, and I’m an M.D., medical doctors, we used to get zero training and I’m honored to say that via Skype we gave a lecture to the third year medical school at my alma mater Boston University and I gave the first ever neurodiversity lectures at the American Academy of Orthopedic Surgeons this year at their annual meetings. It’s not just medicine, and it’s not just teachers, and it’s not just police and judges, and any professions you can think of. It has to be a general awareness in society that all of our brains are different. It’s not a bad thing, it’s not a good thing, it’s just a different thing, and we are all on a spectrum of sorts and we all need different amounts of help and teamwork to get where we’re going and I haven’t met many people who are the entire package by themselves and certainly in our little Different Brains company here, we’ve got a bunch of different brains and what one person really enjoys doing, another person doesn’t like doing but loves doing something else so you can put the whole team together. Now do you work closely with the individual like say the Special Olympics of Broward County or how does that work? How does that get organized?

KE:

The sports delegations work in another office, but we’re all the same company, we’re interconnected but they handle all sports competitions and there’s so many different sports that I couldn’t even begin to start naming them, then you know there’s Young Athlete programs, there’s like over 26, over 20 different departments within Special Olympics Florida. They’re very diverse, very progressive so I do the health program here in South Florida, we have one in Tampa, and there’s another one being developed in Jacksonville, so what we do is when the sports league needs us to come to the area games or state games, just like you saw, then we pack up everything and we go and do the health screening and education, but in our center we keep it going year round.

HR:

I was talking to one of the leaders here in Broward County, Paul Sallarulo with the Special Olympics here who does so much, and his son Patrick is doing very well who has Down’s Syndrome and is rather independent, making a living, and competing at different levels. How do people learn more about you and about the Special Olympics, about healthy community, what are some of the websites they go to, or phone numbers they call, or how do they get in touch with you and our editors will flash these up, but if you could just share with our audience some of them?

KE:

Well the main website for Special Olympics Florida is www.sofl.org and there you will you find all of the different departments that I mentioned including our health programs, healthy communities, healthy athletes and so forth, my name is, well my email is my first name and my last name karlynemile@sofl.org and we have a very ubiquitous social media presence. We’re on Facebook, LinkedIn, Twitter, what’s the other one Instagram, so we’re everywhere, and we’re always posting things that we find that could be educational for parents, the athletes themselves and we like to share the pictures so you can see what we’re up to, what we’re doing so the volunteers could see themselves in action, because we couldn’t do what we do without their help, so it’s happy all around for everyone.

HR:

Very inspiring and I have to say and I want to thank my friend Steve Pearlman, the founder of the AADMD and Rick Rader and Matt Holder and that whole crew out there for introducing me at that level at the doctor/dentist level with the health care tents out there in LA at the ceremonies and the Special Olympics competitions and it was a big honor to speak with Tim Shriver and to meet people like you, and Nancy and the other people at our table over there. It was great! Well that’s going to bring us to an end of another episode of Exploring Different Brains, we’ve been talking with Karlyn Emile of the healthy communities of the Special Olympics South Florida and keep up the great work you do and thank you so much for being with us here.

KE:

Thank you for having me. It was a pleasure.

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This video is owned by Different Brains Inc, kindly donated by it’s original producer PCE Media LLC.

Author Image

Different Brains® Inc. founder Harold “Hackie” Reitman, M.D. is an author, filmmaker, retired orthopedic surgeon, former professional heavyweight boxer, the past chairman and president (and current board member) of The Boys and Girls Clubs of Broward County, and a neurodiversity advocate. However, it was his role as a father that led to the creation of the DifferentBrains.org website.

Hackie’s daughter Rebecca grew up with epilepsy, 23 vascular brains tumors, and underwent 2 brain surgeries before the age of 5. Her struggles and recovery put him on the road to, through 26 professional heavyweight boxing matches, raising money for children’s charities (to which he donated every fight purse).

Rebecca eventually went on to graduate from Georgia Tech with a degree in Discrete Mathematics, and Dr. Reitman wrote and produced a film based on her experiences there (The Square Root of 2, starring Darby Stanchfield of ABC’s Scandal). After graduation, Rebecca received a diagnosis of Asperger’s syndrome. Hackie, shocked at his own ignorance of the topic despite being an M.D., embarked on years of research that culminated with his book Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity (released by HCI books, publishers of the Chicken Soup for the Soul series).

This experience revealed to Hackie the interconnectedness of the conditions that fall under the neurodiversity umbrella, while alerting him to the in-fighting and fractured relations that often plague the organizations tasked with serving the community. Convinced that overcoming these schisms could help all of society, Hackie forged the Different Brains philosophy of inclusive advocacy: “Supporting Neurodiversity – From Autism to Alzheimer’s and All Brains In Between”.

In the company’s initial years of operation, Hackie self-financed all of the content on DifferentBrains.org, all of which offered free to view to the public. Currently he is the host of our weekly interview show Exploring Different Brains, writes blogs for the site, and tours the country speaking at conferences, conventions and private functions, all with the goal of improving the lives of neurodiverse individuals and their families, and maximizing the potential of those with different brains. Separate from Different Brains, Hackie is the founder and CEO of PCE Media, a media production company focusing on reality based content. He recently co-executive produced the documentary “Foreman”, the definitive feature documentary on legendary boxer and pitchman George Foreman.