Connecting the Community

Exploring Autism

Season 2 Episode 2 | 58m 46sVideo has Closed Captions

Discussion with organizations and volunteers about the impact of autism on families.

Dr. Rameca Vincent Leary hosts a discussion with representatives from Autism Pensacola Emerald Coast Exceptional Families about the impact of autism on families, and what partner organizations and volunteers are doing to assist them. Plus, highlights from WSRE's inaugural Amazing Kids Day, an event for families impacted by autism.

04/14/2023

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Connecting the Community is a local public television program presented by WSRE PBS

Connecting the Community

Exploring Autism

Season 2 Episode 2 | 58m 46sVideo has Closed Captions

04/14/2023

Problems playing video? | Closed Captioning Feedback

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(gentle music) (logo whooshing) (gentle music) (upbeat music) - Hello, everyone, I'm Rameca Vincent Leary and welcome to this edition of Connecting the Community. According to the National Autism Association, the rate of autism has grown steadily over the past 20 years, affecting one in 36 children, with boys, four times more likely to experience it than girls. Now, folks, some may be asking themselves, "What is autism, how is it diagnosed, and what resources are available?

" Those questions and many more will be answered as we explore autism. You'll hear from Emerald Coast Exceptional Families. Plus, we'll share highlights from WSRE's Amazing Kids Day. It's an event we hosted recently for families impacted by autism, but first, we'll hear from Autism Pensacola, an organization that has served individuals and families affected by autism in the Pensacola Bay area since 2002. I'm happy to welcome, Mary Donovan McClellan, who serves as executive director. She's joined by Dana Wilmot, Lakeview Autism Spectrum Disorder director. Now, we also have Barbara Hayes, a mother who has a child with autism. And to round out the segment, it's a pleasure to introduce Me'Asia Body, a beautiful young lady with autism. Welcome to all of you. - [Guests] Thank you for having us. - Oh, you're welcome. You have such gleaming smiles on. (guests laughing) Mary, let's start with you. Autism Pensacola, take us back, all right? - Autism Pensacola started in 2002 by a group of parents who were looking for resources for their children. They just couldn't find this one-stop shop. And so they got together, they pulled their resources, and they started Autism Pensacola. It was a different name at that time, but through the years it has grown. In 2007, we changed to Autism Pensacola, and we're basically a resource center for families affected by autism in the Gulf Coast area. - Was there one thing or a catalyst that urged you to start the organization? - Well, I was, this was before my time. (Mary chuckles) - Okay. - But it was mostly that the parents just couldn't find the resources that they needed to give their kids the brightest future as possible. And so basically, they got together with doctors and therapists and diagnosticians, and they pulled it all together and formed the resource center that we are today. - Well, Mary, excellent. We're going to explore autism and what it is specifically in just a moment. But, viewers, here at WSRE, we held an event recently called "Amazing Kids Day" and it was fun, it was exciting. It's something that we hope to have for many years to come. We had a few people there, and I want to share this specific sound bite with you all. Kristen Coffey and her son Graham. Graham has autism. Take a listen. - So, Graham is very recently diagnosed with autism, and we still feel sort of, like, we're not quite sure what we need to be doing and how best to help. And so it's really nice to come to an event and meet people who are there to help us and to guide us along the way. - So, Mary, I'm coming back to you, because you were there. Actually, I think you were at the green screen with Daniel Tiger. - (laughs) Oh, no, yeah. - I think that was your picture perfect moment. (Mary laughing) But honestly, there were other organizations out there. We had the Arc Gateway, Canine Companions, Escambia County Public Schools, Pensacola Symphony Orchestra, and the list goes on and on and on. Personally for you, how was the event in your eyes? - I honestly had no idea what to expect when they first approached us to kinda partner with them. I have to say, I was absolutely blown away. I mean, it was just, it was an amazing event, "Amazing Kids Day.

" - Of course. - Yeah. - [Rameca] No pun intended.

(laughs) - Yeah, but it was just fantastic. I couldn't believe the number of families who came. It was a nice steady flow and, and it really, I believe it's an event that should happen every year, because it was extremely enjoyable, and I love seeing all the kids. - And I think we're taking that hint, folks. (Mary laughs) Dana, moving over into your world at Lakeview million dollar question. Our viewers want to know. Give us a definition of autism, and let's just expand into maybe telltale signs, things that anyone can look for if they're apparent. - Yeah, happy to help. And I wanna say, too, that if you know one child with autism, you know one child with autism, 'cause it can look different. It is a spectrum, so it's a broad range. So symptoms could look from the mild to the higher level and depending on each one. But things to look for is no conversation. Little babbling as they're little, no eye contact. They're looking for that social interaction, which is they're really about interested in other people. It's more not making friends as they're younger. It could be more interested in objects, but not objects that you can play, a typical object play. So it's lining things up, atypical behavior you would see as well. We also look at that communication, so that lack of, and it could be starting out with communication, all of a sudden they lose communication as well. So there's a different way, and also repetitive behavior. So echolalia or just repeating things back, no conversational skills, there's no back and forth. It really is just wanting to be on their own, to be private, and just to be in their own little world sometimes. - So is there a specific age and indicator, I would say, where these signs would maybe start to reveal themselves? - It could be as young as being a year old. You're looking at your pediatrician, you have those certain milestones. You know, as a pediatrician comes in, you know, you're walking and you're talking at a certain age or a certain month. So they really look in that time as they're typically developing with their typical peer age as well. So you kinda look into that, as your growing up indicators. - And we're definitely coming back to you, because we definitely want to cover a few more aspects specifically. But mommy and daughter over here. Barbara, I will say, your smile illuminates a room. - Thank you.

(chuckles) - And your experience with Autism Pensacola, please tell us more about that. - Yes, we were connected with Autism Pensacola when Me'Asia was diagnosed at four years old, they called it a late diagnosis. So her doctor at the time quickly gave us a lot of resources, but she said, "I wanted you to start with Autism Pensacola," because it was for me more, 'cause she wanted me to meet more parents. So I was able to get in touch with them. I got Me'Asia in a lot of things, speech therapy, occupational, physical therapy. They were able to help me find the places, because I didn't know where to start and so they were able to help me. And then they helped me meet some amazing parents that helped me through it, because I had some bad moments. And so it was great to meet other parents that made it through those moments, so. - Well, explain to us what Me'Asia is doing now, because she has an interactive element right there in front of her. - Yes, Me'Asia has a lot of elements. She has two iPads, a laptop and a phone. Usually she's working 'em all at one time. Electronics is her thing. (Rameca laughing) She can work, she can multitask on electronics. So she'll put, she'll use that to speak her speaking devices on there, because she is categorized as nonverbal. So she does have a speaking device on that that will help her. She also has that on her iPhone that she can use. Her earphones are for multiple things. One, if she's in a lot of a place with a lot of people, she's able to put those earphones on, and it helps to keep the noise away from her, so she doesn't feel so closed in. It helps that, and it helps her also to calm down. So if she's really stressed, she can put those earphones on and their noise concealer, she can't hear anything in there. - [Rameca] Well, how old is Me'Asia? - She's 19 years old. Yes, Ma'am. - 19 years old, and we are communicating very well. I'm smiling at her, she's smiling back at me. And I know that she's enjoying her water. - Yes. - But as a mother, I will say this, having that support group from Autism Pensacola really means a lot. I know that. Mary, let's get back to you, because honestly, when it comes to stats, autism impacts people in different ways. Can you talk a little bit about that? Not everyone experiences the same things. - Well, as Dana said, it is a spectrum and there are lots of behaviors associated with autism that also have their own spectrum. So it's spectrums within a spectrum, right? And also, you know, when you know one child with autism, you know one child with autism, because no two cases are the same. No, no, no two cases at all are the same. - And you raised such a good point. So, Dana, actually being diagnosed, how long would it take? Because you might see a few symptoms here or there, but from a medical perspective, I guess what would be the determining factors say, "Okay, it's time for me to make a diagnosis regarding autism.

" - A lot of times is for the diagnosis you're looking for as you can get the extra support, the therapy. There's different therapies, like you said, it was occupational therapy, physical therapy, speech and language. And also ABA, Applied Behavior Analysis, which is the key indicator and the most research base for helping children with an autism diagnosis. So the earlier, the earlier intervention, the better. So you definitely with the pediatrician, there's different autism rating scales to get that diagnosis, with your clinical psychologist, a psychiatrist in that area. But the big indicator of what you want is those services, and the earlier you can get them, the better for that child to help with communication, to help with that social aspect as well, so. - What would you say to the parent who really just feels so overwhelmed? And I'm grateful that Autism Pensacola has so many resources. That is exceptional. But there may be people out there that are really just feeling so overwhelmed. Talk a little bit about that, because the reality, in this world, we face things sometimes unexpectedly, but then again when we have a support group to help us means all the difference. - Yeah, so definitely Autism Pensacola, I refer a lot of parents to their, for those extra support and resources, pediatricians. A lot of places in the community, calling any behavior clinic as well will always help with those guiding into what they need, and what they're looking for on that. The school system in itself, too, there's FDLRS, which is Child Find, and they help with the assessing and getting early. You can start school at the age of three in, here in Escambia County. So that's even better to get those early resources. So they're earlier to get those in the better of the outcomes, and they're earlier on there. 'Cause their learning is so young, and it's like they don't have a long learning history on there. So you definitely wanna get them in early. - Definitely, we surely do now. Barbara, I know that you have interacted with quite a few people. Can you maybe give us an example of someone early on, you don't have to mention a specific name, who may have helped you in this journey? - Yes. So, there was a parent, she has three children all on the spectrum. They were older, I think about four years older than Me'Asia. She's the one who actually introduced me to Autism Pensacola. She actually invited me to an event they were having. I did not wanna go, because I just did not, I did not wanna, I didn't know what I was looking, gonna be looking at. I didn't know how it was gonna look for a child that was six or seven. My baby was only four, so I didn't wanna know how it was gonna look then. So when I walked in there and I saw these kids talking on these devices, I saw them talking to each other and communicating. I was so very happy. I was like, you know, it gave me hope that she was gonna be able to do more. I was like, and it helped me, because I met so many other parents and she made friends at that event. I mean, they make different type of friendships. They may play by themselves, but they have some type of connection. (Me'Asia laughing) - Having fun! See? And you know what? That is so refreshing, because making friends, that's something that I love to do. And I can tell, Me'Asia is right there with the... Speaking of events, and let's talk about some ice, okay?

(laughing) Let's talk about the Pensacola Ice Flyers connecting the pieces. Mary, why don't you just give us an overview of that event? - Well, it's our gala, right? And we have it every spring, and we've had a break and we, you know, because of what's going on with- - Yes. - You know? The Ice Flyers have been one of our most supportive partners in the community. Every year they do something for us and, and so we're very grateful for them. We will continue to, you know, encourage them to be our partner in the community. And it's, you know, these are the types of partnerships and relationships that we need for Autism Pensacola to survive, and continue to thrive. - But I will tell you this, I was perusing some photos and there was a huge check presentation. Tell us about that. - So that was from our Steps for Autism. And that is basically a walk around the Pensacola State track, or, you know, a track in town. And they were our sponsor, our presenting sponsor for that. And so we went out on the ice, and they gave us our check, and it was just, it was so much fun. And the Canine Companion was there. I don't know if you saw that in the picture. - Yes, I did. - But it was so great, and I loved it. - But here's something else. The players on the team, we had some great shots of them out on the ice. One player that was really all in for Autism Pensacola. And even looking at how well the event was decorated per se, just setting the stage, and Me'Asia over there, she's just so happy about it. (guests laughing) I know that she is.

(chuckles) But I just have to say, when we have our community organizations come together in a fashion like that, it really feels good on the inside, doesn't it, Dana? - Yeah, and I'm gonna add something, too, with Autism Pensacola. I moved here in 2009 in a school system, and I wanna say with Kids for Camp, not only for the parents and the children, but they come and teach the teachers, right? So it's a learning camp for the adults working with children with autism in a school system. So not only beneficial for the children and the parents, but also for the school. And teaching those teachers into that learning camp, too, is very important. - Mary, I know that you would like to add something regarding Kids for Camp. Why don't you? - Well, okay, Kids for Camp was started by Judy Burns back in 2003 in her backyard. And she's a parent, or she recently passed away, but she's a parent of a child with autism. And the camp grew from just a backyard activity to what it is now. We're getting to pre-COVID numbers of 70 kids or so. And it's a summer learning lab. So it is a way to get college students the opportunity for that hands-on experience. The special education teachers take what they learn back out into the community. And it's a great opportunity for teen volunteers as well to earn service hours. So we just love Camp. - Dana, one thing that I really liked about some of the images of Kids for Camp that I saw. I saw this huge table laid out look that, like, we had some, I don't know, some glitter on the table, and it's almost like a potpourri of possibilities for these youngsters to engage. But I love the fact that no one is left out on an island by themselves. And with the work that you do at Lakeview and helping people, parents, those impacted by autism, is there any takeaway that you can think of right now? Something that you may want to tell our viewing audience to encourage these families, and anyone impacted by autism to stay strong, and just know that they have the resources they need, that support. - Yeah, that's great. And like I said, I can, know enough is that early intervention don't wait, 'cause we do have parents who come, and the children are adult at that point, 'cause the resources do dwindle down as they get older. So you definitely, and I was saying you're not alone. You know, there is a wide community out there, and it's hard, because they do feel like an island on their own. But reach out, there are many people, a lot of groups. And with Facebook nowadays and with the community and to be able to connect with people, it's the biggest thing, because you're not alone and there's people out there to help and just, there's no stupid question, you know, calling- - Every question's a good question. - That's a good question. So questions you just wanna ask and don't be afraid, too. - And, Mary, I'd like to add, of course, at "Amazing Kids Day" we had representation from the Santa Rosa County District Schools, Escambia County Public Schools. We had Pensacola Symphony Orchestra, Studer also with their programs, and what they'd done at the Children's Hospital. the Ascension Sacred Heart. So we have all these great community organizations coming together, right? One hand holding yet another hand. Right, Barbara? - Yes. - All these hands in the pot, I think it's just amazing. - We do, we need them all. We all need them, and we need a family. It takes a family to raise these kids, and we need that support. So, yes, we do need it. It's great. - It definitely takes a village. Ladies, thank you so much for joining me during this segment. All right, folks, we're just getting started. Now we have a special treat for you. WSRE recently held its "Inaugural" Amazing Kids Day, an event for families impacted by autism from music to cuddly canines, children and families enjoy this exceptional event. Take a look. We'll be back right after this. (harp thrumming) (Musician cheering) (children applauding) (upbeat music) Hello, everyone, we're continuing our discussion with Autism Pensacola. It's a pleasure to have Mary and Dana back for another segment. They've invited two guests to share their experiences. They are Jimmy Donohoe, an Autism Pensacola board member, and parent of an autistic child. We also have Mike White, another Autism Pensacola board member. Welcome to all of you. - Thank you! - Looking good in the blue over there, gentlemen. (guests laughing) - Appreciate it. - All right, Jimmy, let's start with you. You wear many hats within the organization. Let's talk about a couple of the projects that you have a heavy hand in. I know, Project Lifesaver and Take Me Home. Take- - Yeah, the Take Me Home program is something that was developed here locally, where we can put pictures of individuals on the spectrum in this database. And the first responders out there will have a picture of 'em in case everyone run across 'em once they have eloped. So in other words, they've gotten out of their caregiver's care or their parents' home or whatever it is. Elopements a huge problem with that. And 50% of our individuals on the autism spectrum are nonverbal. So we have to be able to identify them somehow, and just by putting the basic demographic description of them into this database. If they're entered into the database, they can be identified right there on the street, and take 'em back to their home. So, hence, the Take Me Home program. - [Rameca] Take Me Home. - The Project Lifesaver bracelet is even a much better and bigger part of our organization, because it's a bracelet that we can track. There's a lot of GPS bracelets out there that do good, geofencing, so they can't get out of the yard maybe. But more importantly, this one is a radio signal instead of GPS, which is important to us, because a large percentage of our kids are drowning, and the radio signal will come out of the water. So it's basically a bracelet that we put on them, and we can track it. Law enforcement has the gear to track 'em down and find out where they're at. And Project Lifesaver nationwide has had over 3,600 finds alive. - Oh, that's amazing. - And that's 100%. So they've never had one die. They use it for Alzheimer's and autism, but it's a very intricate part of our, I'm sorry, our community here that will help save some lives, I'm sure. - Now you mentioned drowning, specifically. Can you elaborate a little bit on that? - Yeah, sure. As I mentioned, (coughs) a large portion of our loved ones will elope at some point. 50% will elope at least once. Of those 42% will end up in a tragedy, of those 42%, 91% will drown. And so we have a huge problem with that, and we wanna educate the parents. One of the things we wanna do is a- - Absolutely! - A parent teaching, where we say, "Hey, this is a big problem. So if they elope, you can't wait 24 hours what the TV says, you need to call your local law enforcement agency ASAP, and get them on it right away so that we can find 'em before they get to that pool of three blocks over and they end up drowning.

" - Very, very salient point that you make. And, folks, just another great reason to share a little bit more about our "Amazing Kids Day" event that we had here recently at WSRE. We want to share the sound bite from Mallory McNary and Jordan McNary. They have a son named Zinamon. Let's take a listen. - As new parents, this is all, you know, a journey for us. So the more resources, the more information we can get and recommendation from people who are familiar and have experience. It's invaluable. - It certainly is. Mike, and I know that you also serve on the board, but let's hear a little bit about you and your journey, especially working with these fine people. - Yeah, absolutely. So when I was two and a half, I was personally diagnosed with what at the time was considered Asperger's and PDD or Pervasive Developmental Disorder, now lumped in and called Autism Spectrum Disorder. - [Rameca] Okay. - From that time forward, my mom worked very hard to get me into the proper therapy, speech therapy, occupational therapy, physical therapy, to get me on the right track. I started at a preschool for special needs children, and with the goal of being declassified by the time I got to kindergarten, which basically meant just, you know, not having to have an IEP or a specialist with me in the classroom, which fortunately for me, I was able to go to kindergarten, and just be on my own. And from that point forward, I was able to kind of develop my social skills, picked up basketball along the way that led me into high school and playing basketball in high school and then ultimately in college, where I met my wife and graduated there. But it was there at college that we were actually celebrating Autism Awareness month. And my mom made it a point to reach out to my coach and let him know that, you know, "Michael has Asperger's or Autism Spectrum Disorder and he needs to be a part of this.

" So I was interviewed for my school for a story they did, and from that point forward I realized that my story can be impactful. You know, like, you know, these wonderful women have been saying, you know, "You know one person with autism, you know one person with autism.

" And it never looks the same, it's always gonna be something that you just need to keep an eye out for. So when I moved down here and move back here to be closer to family, reached out to Mary back in a few months ago, and we talked and I got involved, and she asked me to be on the board and I had so happily accepted. - [Rameca] Right, you can't say no to Mary. (guests laughing) - Yeah, can't say no to Mary, absolutely not. - But, Mike, your mom is such a special woman, and I know that we had Barbara in the previous segment with Me'Asia. Talk a little bit about your mom and the strength that she's provided for you. - She's, that woman's been my rock for as long as I can remember. She's always fought for me. I mean, I was formally diagnosed at two and a half, but she noticed something at six months, and she pushed and pushed, and she had a doctor that kinda pointed her in the right direction saying, "You know, I can't formally diagnose him, but here's what I think might be going on.

" So she went to the library, did the research, you know, put me in the right therapies. And, you know, even throughout my school years, a lot of the troubles that I was having, you know, with autism spectrum disorder, that a lot of teachers and other individuals weren't able to understand, she continued to have my back and support me along the way. And it's groups like Autism Pensacola, that make it easier for those parents to have those resources available to them. You know, growing up in the 90s, I mean, stuff like that wasn't available, you know? But, Autism Pensacola being here and the community and surrounding communities, it's making an impact on a lot of families. - It certainly is. Mary, so we're going to talk a little bit more about the importance of the programs and services that are offered through Autism Pensacola. And I see that big smile, so you're ready to talk some more, aren't you? - Well, we do have quite a few of our own programs and services in addition to the resources that we offer. We talked about Kids for Camp, that is a fantastic program. And with Barbara and her daughter, Me'Asia. Me'Asia is a new camper this year, so we're very excited about that. And we have our Project Lifesaver and Take Me Home, obviously. But we also do things like holiday assistance gift cards, where we provide $100 gift cards to children who would otherwise, you know, need that, they need that financial system. - Holiday, you know? - Yeah. - Right. - We have caregiver support groups and these are wonderful for families to kinda bounce off. You know, it's this like-minded connection that they have and so many great ideas have come out of that just from experience and other parents who have experienced those things. And we just have a lot of things going on, so. - Hey, I'll one up you on that? (Mary laughs) What about moms, okay, bingo, with your besties? - Oh, my gosh. - Take a break, right? Talk about that.

(laughs) - Right. Well, that was, yeah, that was a brainchild of our chairman of the board and she and I talked about it in November, and before we knew it, it was rolling and it was a fantastic event. Very successful, and we're gonna be doing it many, many times. It was a great fundraiser for us, so. - Mary, I will have to tell you, when I saw the picture and all of the images of these moms just, hey, going at it with the bingo. (Mary laughing) And I'm looking around guys, and I said, "I wonder how many ladies are there?

" - 170?

(laughing) (Rameca laughs) - There were quite a few. - It sold out in 36 hours, the first 80. And so we went ahead and doubled it, and, you know, now we're gonna do it twice a year, so.

(laughs) - Sounds good to me. - I wanna say, too, with Autism Pensacola, they also not only with the family support, but they also bring in children like teens with a spectrum who have a hard time with that social interaction, maybe not interest in peers or the typical game play. They also bring them in on the weekends to be able to have and teach them that typical play as well. So there's just so much more than just that parent support that Autism Pensacola brings to the table. - In addition to those things, Dana, I know that you can give us some more information regarding dealing with it right at the day-to-day, and how you cope throughout the process. Why don't you share a little bit more about that? - So a lot of the things is, you know, the therapy and stuff that parents can do so many things at home. We call it the pre-med principle, which is kinda like the grandma's principle. Like, first eat your vegetables and get dessert. The same thing when they're following directions, however time listening. You know, you can use those tools of first you can, you know, do this and then you can earn like that iPad or that time on the computer that they need to help with that. So there's a lot of different things they can do in the home that can help in the day-to-day. And really the big thing is working on that communication. So a lot of times, they point gesture and that's great, but if they have any verbal, you wanna make sure it's teaching them that communication you need. They need to use their voice. So anytime you can say, "Hey," and they have those words, you have them state it, because that will help develop in that early age to have their voice and to get their needs met. And that's the biggest thing, they really want, they have the behavior, but it's just because they want things, right? They don't know how to ask, they don't know how to, or we can say, "Hey I need this.

" They don't have that skillset. So we have to really teach that language in the very early ages. - Understand that completely. - [Jimmy] And can I add something to that? - Absolutely, Jimmy. (Jimmy coughs) - Too often in this community that there's parents that think this is a stigma, there's a stigma to autism, and they don't seek out the help when they should at the early stages. And I just encourage anybody that thinks they might have some, just ask your medical doctor about it, and they'll guide you to the right places if they think it is. Too often we get past that early learning stages and it's a difficult situation. My son wasn't diagnosed because of other reasons till later, and if we'd had that diagnosis earlier, I think we'd have done better. - Well, Dana, of course, Jimmy raises a very good point. We have a network of physicians. Would you like to talk a little bit about that? Just how many extra hands we have on deck and as far as them looking out and just trying to really seek ways to help even more so? - Yeah, we have lots of resources in the community and it is a long waitlist, because there are many things, but like the adult and child mental healthcare, community health. Your pediatrician can also guide you and there's other places to get that early diagnosis. Even if you don't do that, even the school system and that child find coming in, they will also, they have school psychologist on staff that will also test and kinda hit that placement in that early, starting in that, like, preschool age of three, right? So that's those key early interventions on there. So there's a lot of stuff in the community that is available. Happy to, I mean, Autism Pensacola, I refer, 'cause they have the whole list on the website. - Your website is amazing. - Yes. - Well, I have to say this, Mike. There are a lot of people out there watching right now who are sitting back and wondering, "Hey, how can I help? I would love to be a volunteer.

" Why don't you talk a little bit about that? - Yeah, I mean, the best way to get involved is to just reach out to put yourself out there. That's really how it started for me. My day job is as an insurance agent, so, Mary almost kinda shot me down on that regard. So that's a story for another time, but, Mary's always open to allowing anybody to come in and be a part of it. She's always, you know, super personable, wanting to know what each person's, you know, tie to autism is, even if they don't have a tie, you know, why they wanna get involved. So my first event was Steps for Autism, and it was a wonderful event and it really opened my eyes to what Autism Pensacola is doing in the community and what the goal is for them moving forward. - What are some of the specific things a volunteer could do? Let's just say somebody goes to the website and they say, "I would love to be a volunteer.

" Ladies, and I see you shaking your head, Mary. So let's talk about some of the specific things somebody could do who wants to become a volunteer. - Sure. Well, of course, the biggest thing is, it is, okay, we've got our camp, obviously, we use a bunch of volunteers for that. In the summertime we have a three-day community event called Sensory Street, and we get probably anywhere from 40 to 60, you know, volunteer shifts that week. And that is a huge opportunity for volunteering. We have a very small staff, and so we also need administrative help, website design. I don't know, Mike has, Mike helped me with fundraising for Steps for Autism. That's how this all started with Mike being on our board, and there's just all kinds of opportunities. Our events, our family picnic days, our, we've got community outreach, we have several opportunities for when we're out in the community, and have a booth, and, you know, we need people to blow bubbles and face paint, you know, things like that, so. - Well, I'm curious, you probably have maybe even youngsters coming that might say, "Hey, let me help set up a table. Can I clean up afterwards?

" Have you ever experienced anything like that? - Oh, absolutely. One of our board members has a son who was trying to earn service hours for his year at Catholic High. And he showed up and he'd had homecoming the night before.

(laughs) He did not quite wanna be there, but by the end of the day, yeah, pretty much close to the end of the day. He was so happy to be there, and it was just a really great experience for kids to see, you know, that there are different people in this world who think differently, and it's great for them to have that exposure, and it promotes awareness and inclusion. - And I wanna say those volunteers also come back to become a behavior analyst or, and or a special educator. So they start very young and those high school years to come back and that's kinda the career they go for as well from the experience from Autism Pensacola as well. - Well, one thing that I read recently regarding it, of course, autism not affected by race, region or socioeconomic status, anyone, right? - Uh-hmm. - Can be diagnosed with autism. And, Dana, with your work at Lakeview, have you ever heard, I'm gonna call it a success story, all right? Maybe a parent that came and said, this is totally outta my (chuckles) zone, I don't know what I'm doing, but can you think of at least one that you would like to share? - Yeah, there's one in the clinic that we've actually graduated three of our clients out of the program, because they've mastered everything in their elementary age. So they're probably a fifth grade, a couple third grade as well. So definitely you see those growth on there in trying to get that, but again, it's at that early intervention. They've been there and it's kinda keeping that in theme. So, yeah, there's lots of success stories out there. - Love that, love that. - Yes. - And, Mike.

(laughs) (Mike laughing) I'm coming back to you, because I know you probably just having heard what you shared with all of us in the segment with your help and your initiative as a board member as well. Why don't you share a quick one for us, just success stories, you would say. - I mean, I don't like to toot my own horn, but I mean, myself. (Rameca laughs) I mean, it's, you know, there are a lot of people that have been in my position that, you know, my wife's cousin, for example, I mean he, you know, if he had the intervention early on, could have, you know, been a lot further along. But, you know, like Jimmy mentioned, because of the stigma surrounding it there, he didn't receive the help that he needed. So because I had a mom who was willing to fight for me, and because you have organizations like Autism Pensacola that are out there, you know, creating and building these, you know, catalogs of resources for people to have access to, it's making it a lot easier for these families to have more peace of mind that, you know, their child will never be alone again. - All right, and, Jimmy, you know, I'm coming into your corner. Why don't you share a quick story with that thing? - Well, I'm thinking of the famous people, Elon Musk. - Oh, yes. - You know, it just came out, and said he was on it. So there's a lot of those out there. There's a lot of rumors about some other very successful that haven't come out yet, but they're, you know, Daryl Hannah, there's a lot of actresses. And there's famous people on this, on the spectrum that are very successful. So for those that are out there, don't give up. Whatever your dream is, keep going. - Never give up. - Yeah. - Never give up. And, Mary, as we close out the segment and you have listened and you have, we learn every day, don't we? We learn from everyone. It's a continuum. But any final words that you would like to share? - I just want to make sure that, you know, people understand that it's the community that embraces the individual with autism that makes all the difference in the world. It helps reduce the stigma, it helps to spread awareness and acceptance. And eventually, what that all leads to is inclusion of these individuals in our housing, education, employment. This is how we bring members of the autism community into our lives and help give them the brightest futures possible. - All right, and I know I've learned quite a bit. You all are so amazing. Thank you so much for joining us. Okay, folks, as we head to break, we want you to hear Susan Hussain's takeaways from WSRE's Amazing Kids Day as she smiles with her children in toe. Plus, we'll have more sights and sounds from the event. We'll be back right after this. - I think this is a good way for outreach to families that may not know about certain therapy centers or certain programs that are out there for our kiddos. And just a way to be able to go out in public, let our kids enjoy all the activities that other children enjoy without restraint and without feeling judged. (guitar thrumming) (guitar thrumming continues) (upbeat music) - Hello, everyone. It's an organization whose mission is to connect and support special needs families while enhancing their lives through events and education. It's a pleasure to feature Emerald Coast Exceptional Families during this segment as we continue our discussion on autism. I'm happy to welcome Kendra Booth, the organization's executive director. She's joined by Jenelle Logan, an Emerald Coast Exceptional Families board member. To round out a segment, we have Amy Bodkin, an autistic adult. Thanks for joining me, ladies. All right. So, Kendra, take us all the way back to the early beginnings regarding the establishment. - So my son, John, was diagnosed with autism at age four. And we were handed a diagnosis, we were told all of the things that we needed to do for him, but there wasn't anything for the family. - Oh, okay. - On, you know, what do we do? How are we supposed to feel? How are we supposed to process this? And at the time I remember thinking this, "That's not right. Like, there should be something.

" And then I met other moms who had the same situation like Jenelle, who, you know, we were like, "Wait, that happened to you, too? That's not okay.

" And then I met other families, families whose children had down syndrome or cerebral palsy, and they didn't have a group. You know, Autism Pensacola was here and they're wonderful, but we're Santa Rosa County. And to drive all that way with a very active four-year-old, who didn't understand the concept of safety was just not feasible. And so we got together, a group of us and thought, "You know what, we need to start something here.

" And so, Emerald Coast Exceptional Families does serve families with autism, but we also serve any special need. - [Rameca] That's great. - Diagnosed or otherwise. - I like that, and so how did Angela Nandin come into the picture? Where does she fit into the equation? - So, Angela is our vice president, and she has three boys on the spectrum. They're absolutely adorable. They're a handful, but they're absolutely adorable. - And you love them, I'm sure.

(laughs) - I do, they're my second family. - [Rameca] Yes. - But we attend the same therapy center, and I had someone who worked there say, "I need you to meet this family. We had just started Emerald Coast Exceptional Families.

" And they were like, "You need to meet this family," because they had just come in from Japan, and all three boys had been diagnosed, and they're a military family, and I was at the time as well. And so we met her, and never looked back, as she joined the board about six months later. - I will say this, Kendra, you and Angela were at WSRE's recent Amazing Kids Day, and we want to share this special clip with you from Amy Warrington, and she represents the Arc Gateway. - I think it's a great opportunity for all of the resources in our community to come together so that families that have children with autism can come to a place where they feel comfortable, and be able to meet other families, and see other kids with autism, and find out what services are offered in our community across lots of different areas, which is wonderful. Our community really provides so many supports and so many families aren't aware of them. - All right, Amy, I'm stepping into your world. You're smiling at me, because you just heard what she said. (Amy chuckles) But let's talk about culture a little bit, and I noticed you're wearing a very beautiful shade of red. - Thank you. So in the autistic community, we tend to wear red in April, because (exhales deeply) feeling aware feels kind of like we're being left out a little bit when people are aware of us. What we really prefer is acceptance. But more than that, appreciation. - Appreciation. You mentioned some other colors in the green room. - Yeah. - Yeah, we saw a lot of blue in the last segment, didn't we?

(laughs) - Right, so blue has always been the color that was used primarily by autism speaks. There's been a lot of frustration in the community, because many times they have, autistics have felt like our voices haven't been heard when things are being said about us. And so that is (exhales deeply) and I work with families who have a variety of different kinds of needs. I consult online worldwide with autistic, like, autistic children and parents, but I also consult with people who have lots of needs, kinda like what Emerald Coast Exceptional Families does in that regard. But that's one of the things that you kinda have to be aware of that those kids are people, too. - They really are. (Amy chuckles) One interesting thing that I did, Amy, and you may not know this. I went to your website and I tell you your stories, it's just amazing. - Thank you. - And why don't you tell us a little bit about that? Because when people visit your website, they're going to see a lot of interesting things, aren't they? Why don't you mention a few? - Okay, so I grew up not diagnosed as autistic. I grew up diagnosed as ADHD. I was on the highest amount of medication in my entire school despite being the smallest child. So clearly, there was a little bit more going on, but we weren't catching girls as much then, 'cause it turns out sometimes we look different.

(chuckles) And I went through school, ended up getting a educational specialist degree and educational psychology. - Okay. - Worked with public schools, consulted with private schools, eventually found my way into homeschool circles when my two autistic children came along. And I had one who was very unhappy in any kind of a school setting whatsoever. So we entered the world of homeschooling, and that really gave me an opportunity to work with families in different states, and countries to help them figure out how they can support their child, especially if they're homeschooling. But sometimes I still work with families in other settings as well, so. - All right, Amy, I know that you'll definitely help turn anyone's frown upside down. Trust me, I'll be back (Amy laughs) in just a moment.

(laughs) So, Jenelle, as a board member working with this beautiful lady over here, and I see you smiling, because you're excited about it. Let's talk a little bit about your experience and how you found out about the organization. - Well, I have a nephew that is 27, who is autistic. So I knew the signs to look for with him, but at the time I was living in Pennsylvania and there wasn't any support. We actually didn't know anybody else who was autistic. So it was a very hard for my sister going through that, but I did know what to look for, and I was actually a respite provider for him. - [Rameca] Okay. - So when my second child wasn't speaking at 18 months old, I was like, "I know I need to do something about this.

" So I got him into speech, and it just so happened that the speech therapy center is the same center that Kendra goes to. - [Rameca] Oh, yeah, it's with Kendra. - So I started out with speech and then was getting his diagnosis, which he was diagnosed at two. And while going through all of that, I would be sitting in the waiting room, like, just looking at all the other moms, but not knowing, like, is there any support? And they started the Emerald Coast Exceptional Families. They asked me to be on board, and I've been on board since the beginning. - Ever since. Now, speaking of support. - Yes. - We're going to take you back to WSRE's Amazing Kids Day. And this next person you're going to hear from is a former student of mine in the business department at Pensacola State College. She has two autistic sons. Her name is Khaliah Williams. Let's take a listen. - So, Carson is five. He is developmental delayed, and also on the spectrum for autism. We're currently awaiting testing to see what type of autism he has, what the severity is, and things like that. He does attend public school here in Escambia County, and he does receive speech therapy. And, Kerion is nine. So he is high functioning autistic, he also has a speech impairment, he has an emotional behavior disorder, and he is currently awaiting ABA therapy on the waiting list here in town. - All right, and she's such a beautiful woman. And I tell you what, it's just really makes me feel good inside and hearing these stories. Kendra, let's talk about the core values of the organization. There are several, but let's talk about integrity and respect. - Well, we just believe that everyone deserves respect. Often, people with disabilities become discounted in our community, but they're amazing, and they're a part of our community and everyone deserves that respect. And we just believe that that should be a vital part of our core values and integrity. You know, we are entrusted with people's families, their kiddos, their funds, people who choose to donate to us, and we wanna make sure that we are good stewards of all of that information and those funds in our community. - I will say perusing through some photos, and I know Angela's not here, but she recently took a trip to Tallahassee Governor's Mansion. A picture with Casey DeSantis, First Lady, right? - Yes, yes. - So why don't you talk about that event? - So last year, actually, about this time, we worked with the Santa Rosa County Sheriff's Office to develop the safe program and it's similar to Take Me Home. It's a little different, and then it incorporates all people with disabilities, not just autism. And it is a chance for first responders to receive information in the case of an emergency. And, Angela was our key person for that. And so she helped Miss DeSantis with three different initiatives over the last year. And so she's been to three different press conferences, talking about Family's First. And, Miss DeSantis decided to host a gala for the Florida Local Heroes. And, Angela was chosen as a local hero. So she and her husband, Johnny, left the kids with me. - Okay, you take care of them. - They went to Tallahassee for the night, and got all dressed up, and had a wonderful time at the Governor's mansion being recognized for her hard work. - Speaking of recognition, the Santa Rosa County Sheriff's Office has done quite a bit, and we have an image of a check presentation. Would you like to elaborate? So with our work with this sheriff's office, they wanted to really thank us and give back to ECF and our families. And so last June, or, sorry, last August, it was very hot. Sheriff Johnson hosted a golf tournament on our behalf, and we were able to raise quite a bit of money. And so that was very exciting. And, Sheriff Johnson is extremely generous. He really cares about our special needs community and tries to give back as much as possible. - And so much excitement, too. I've seen images of adults with beautiful superhero masks on, there's several events that are held. We talked about the Spirit Award, and also this different event really was themed somewhat like a Hollywood promotion, if you might say. - So we really believe in working with other organizations in our community, and one of the things that we focus on is our military community. 50% of the families we serve come from Eglin Air Force Base and Hurlburt Air Force Base. And so that was the Hurlburt Spouses' Club event, and you had to pick a superhero, and your theme had to be superhero related. So being that we serve the disability community, we chose a superhero with a disability. Did you know that Batwoman was shot by the Joker and paralyzed? - Well, thank you for that interesting fact to everybody.

(laughs) - Yes. And so our table was Batgirl-themed, and all of the images on the table were true heroes with disabilities. - Well, I will say the T-shirts that they were wearing quite commanding. Things that a superhero would say, (laughs) right, Kendra? - Yes. - Now, Amy, back to you. So you're hearing the conversation, right? And I know that things are resonating well. Tell us a little bit about, I'm gonna say even more so, about your journey and how your website has also helped create awareness? - (exhales deeply) It's, it's a challenging area to work in, to be perfectly honest, because there are so many feelings to navigate. You have parents who are overloaded, who aren't sure what they're supposed to do. They're not sure how they're supposed to ask, who they're supposed to ask, any of those kinds of things. You've also got children who are now adults, who sometimes have had negative experiences in the past, and this has caused some trauma sometimes. So there's a whole lot of different feelings to navigate. And also sometimes, because communication and sensory processing is so different with autism, it can really impair our ability to get the right kind of help that we need. When you go to the doctor, most of the time they ask you to describe your symptoms. If your communication is different or your pain tolerance is different or you're feeling it in a different part of your body than they expect you to, sometimes you don't get the kind of services that your body needs. And so those kinds of things can impact how we grow, how we develop, how we learn. If you don't feel good, you're not gonna learn well. And so trying to look at a child as a whole person, and look at that whole person as part of that whole family, and seeing what is beautiful and what is wonderful, and also where that child is needing supports or where those parents are needing supports, because we can end up reacting towards our children based on our own past experiences if we aren't being aware of it. - Exactly. Now, Jenelle, we were talking previously, Kendra and I about the core values. And as a board member, community, just the essence of it, right? Community excellence in transparency. Can you talk a little bit about those things? - Yes, so my heart in our nonprofit is putting on events for families. So we usually do like a Trunk-or-Treat event in the summer, a sensory-friendly movie. We do a luncheon for the kids. So those will all be coming up on our website. And that's just where my heart is, is doing events for our families. - And how long have you been doing that? So as a board member, I know that there are a lot of things on the table, right? - Yes. - So, you might have one specific thing that you're working on, but then somebody might pull you away and say, "Hey, I need your help on this, too."

(chuckles) - So my Trunk-or-Treat event has been mine the whole time. (Kendra laughing) That's my heart. I will- - That's your heart. - I will forever do it. - Now, Kendra, how does that make you feel? And you have really been so happy throughout the segment, because you're hearing things that just reinforce the fact regarding the impact of your organization. But you've emphasized so many salient things, and let's talk a little bit about diversity there. Diversity is such a broad term, right? - It is, and because we serve, we jokingly say. - Okay. - We serve everybody, ADHD, all the way to Z. We have a wide range of disabilities that we serve. And so we have to be diverse, we have to be able to support many different families, and many different diagnoses. But what we've learned over the time is that no matter what the diagnosis is, we're better together. We're all learning from each other, and I have learned just as much from Amy as an autistic adult about myself and about my children. I've learned so many things that weren't ever in my scope, such as universal changing facilities. So different disabilities, we learned different things. - Wide gamut. I've learned so much. I really appreciate having all of you on the show. - [Kendra] Thank you. - And, folks, I would definitely like to thank all of our guests for joining us. I'm Rameca Vincent Leary. Remember to keep it locked in right here on WSRE PBS for the Gulf Coast. (upbeat music) (upbeat music continues)