Tony Mantor: Why Not Me ? - Paul Cimins :Raising Autism Awareness: The Impact of Hope Saves the Day Podcast and Autism Radio

Episode Date: July 26, 2023

Send us a text When faced with the challenges of raising a child with autism, can the power of connection and shared experiences help parents navigate their journey? Tune in to our inspiring conversation with Paul Cimins, the founder of Autism Radio and Hope Saves the Day podcast. Discover how he turned his own experience attending a grassroots support group into a podcast that now reaches millions of people worldwide, becoming the first radio-syndicated show to talk about autism. Through his work, Paul has touched countless lives, including a single mom in Dallas, Texas, who struggled with raising her autistic son. We'll share the heartwarming story of how Paul's organization provided an iPad and speech therapy that led to the child saying "Mommy, I love you" on the iPad within nine months. We also explore the challenges and fears faced by caregivers of individuals on the autism spectrum, discussing the need for more understanding, funding, and dialogue surrounding this important topic. Don't miss this uplifting and informative episode with Paul Cimins and Tony Mantor. https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me The World Podcast, hosted by Tony Mantor. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make your laugh, some will make you cry. Real life people who will inspire and show that you are not alone in this world. hopefully you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mantor, and welcome to Why Not Me the World. Today's guest is Paul Simmons.

He is the founder of Autism Radio and Hope Saves the Day podcast. His stories are going to be stories of inspiration and never giving up. And I'm just so happy to have him on our show. Thanks for coming on, Paul. Thank you. So tell us a little bit about autism radio and hope saves the day. So autism radio actually started in 2010. That's kind of when we became a nonprofit 501C3 organization.

Hope Saves Day, which is our podcast. That started in 2007, actually, when podcasting was very, very early on. Again, just, you know, was sitting on the couch, had surgery, recovering from surgery and was thinking about there was an organization called Kozak at the time which is now Autism, New Jersey. And we got to go to some support groups, which were really grassroots support groups and got some great information. And honestly, we felt not so alone, right? I mean, I think that was the big thing for me was just having some other parents that we could talk to that have been through, you know, the diagnosis of autism and actually had kids that were even, you know,

almost teenagers at the time, so they were dealing with it much, much longer than we were. And that really resonated deeply with myself, you know, having that information. But the hard part was I found, you know, finding the time to go to a support group when you work a full-time job, you need a babysitter, right? And there was this whole thing. And I started learning about podcasts. I was like, oh, this whole thing about podcasts, I wonder if I could put a podcast talking about autism kind of like the support group, but putting it online.

And that's kind of where the idea sparked from. You know, and it was a 30-minute show, and it was kind of like basically was trying to get some information out there, but also share information where people didn't feel so alone. I mean, that was the whole correlation for me being a parent. I love the fact that you use the term not alone, because I've been using that for quite a while. And part of the reason is because I taught with a 24-year-old kid that was diagnosed autistic at eight years. old and he told me that he was bullied and felt alone through high school because of it. And in this world, we should not have anybody that's ever feeling alone. So I think there's two things that we need to do is correct that so that people don't feel

alone. And then the next thing is bring more understanding into it so that maybe people will realize what's going on with autistic people so that they, can help them, guide them, be nice to them, and just generally help them through life so that they don't feel alone. No, that's a big point, Tony. I mean, I think that's huge because understanding is part of our journey here too at Autism Radio is also to talk about the topic of autism, but to break it down into different layers

so that a lot of the neurotypical, you know, people understand it, right? You know, you get somebody off the street and they see my son. on making noise, right? They have no idea what's going on or maybe he's acting out. They think he's just misbehaving. Well, you know, obviously there is a cognitive development disability there that he has and really need to educate people on that. And I usually take that opportunity if I get the dirty looks or something. Rather than getting mad and upset, I try to talk to the person and educate him. Sometimes they're receptive. Sometimes they're not. But I try to do it in a nice kind way where just to, you know, educate somebody that may not understand. And by the time they

walk away, they're like, wow, you know, that's, I didn't know that. And that's a good thing. Yes, that's a very good thing. Because the more knowledge that you can pass along to others and the more knowledge that people can find out just will help make things a little bit easier so that when they do see someone this autistic out and about and they might have an episode or whatever. they don't feel as threatened or they don't feel as if they're going to take and say the wrong things and insult anybody. Yeah, no, that's, I think it's great. I mean, again, I know we got a chance to talk the other day and get to know with your background. And again, you know, someone that's not directly connected to autism and the fact that you want to, you know, raise, like you said, awareness, acceptance and understanding coming from someone that really doesn't have a direct, you know,

you know, connection with autism directly, you know, that, that's a big, that's a big deal because, you know, I think you can do something very special with that. Again, just bringing that awareness and acceptance and understanding from, from a different perspective, because myself, again, you know, coming from a parent's lens, it's going to be a little bit different. You know, I've, I've kind of like live the life. And, you know, everybody that has a child with autism has a child with autism, because they're all individuals and they're all very different. Yes, there are some correlations and some similarities of maybe a situation I've been through similar, whereas other parents may not have gone through that situation.

And I think that's what really stands out when you talk about the mysteries of autism because they're very different. And you have individuals where, you know, there's a lot of changes too with autism because, you know, when I first heard the word autism, I mean, the first thing I thought of was the Rain Man movie, which, you know, Tom Cruise and Dustin Hoffman, I mean, that was the only really correlation or understanding I had. And, you know, it's a very different, you know,

kind of interpretation by Hollywood that shows a totally different side of autism. And I couldn't relate because when I looked at my son and the things he was doing, there was no, there was no, you know, likeness like that, you know, it was very different. So again, there's so multiple different levels of the autism spectrum. And that's why it's such, you know, it's such a broad spectrum. You know, when you have, like you talk about, you know, celebrities that have autism, they say like Elon Musk, one of the most famous individuals, you know, out there super smart guy and super wealthy, you know, he says he's on the spectrum, right?

So again, Dr. Temple Granite, who is a personal friend of mine, is one of the most successful authors. And, you know, she did things that, you know, having such a special mind and the way, you know, she calls thinking in pictures. And that's how her mind worked, where she was able to make calculations in her brain where she could literally see the vision and, you know, figure out a way how to bring cattle through, you know, again, I know it's probably not a fun topic. but to the slaughterhouses, but she found a way to bring, you know, cattle and they were relaxed in a much more comfortable manner, which led to actually better quality meat and just a better experience for the animals itself. You know, and again, she, she developed this all in her mind. The brilliant woman, you know, and she also talks about a lot of insight on autism, you know, from a different perspective of growing up with autism because when she was first, you know, when

she was born and she was developing, you know, she had limited speech and almost was like non-verbal at that time. And she really lacked a lot of skills. And her mother, she gives her mom a tremendous amount of credit for really pushing her outside the limits because I think, again, back then, you know, they would probably put her in some kind of a mental, you know, institution, put her in a room because that's how they kind of dealt with disabilities and stuff back then, which was really sad. And we've progressed, you know, a long way these days with special needs and just how we approach it. Yeah, things have changed so much over the last several years and that's really good. Now, your son was diagnosed and that was about the same time that you launched Hope Says a Day.

Is that correct? The son was diagnosed, which was about 2007 right around the same time, the idea and this podcast, you know, Hope Saves a Day that I developed and started. We syndicated our program, and we got lucky enough where our program got syndicated in 2009, and we reached a lot of people. Yeah, that's always great. I'm sure you must have some good stories from that. I think one of the big things that always stands out was one of my first listeners.

It was a single mom actually out of Dallas, Texas. I'll never forget. I got an email because we had a Gmail account at the time, which was kind of new too. And, you know, she sent me an email. And she says, you know, she listened to the show was like 2 o'clock in the morning. And she was going through a really hard time, you know, being a single parent. And, you know, she, she again said that she was going to a really dark place and she heard my story. And again, it really resonated with her that she didn't feel alone.

And that's, that was a real life example of someone going through something really difficult. And actually listening to the program and got something out of it and connected with it. and connected with her. And she reached out to me. And we've been in contact for since 2007. I mean, that's incredible. I developed a relationship with her. And her son is now 23 years old. And doing very, very well. We actually were able to provide her services over the years as well for speech and language. And the one really cool story I like to share. One of the first families we helped was her. We got her an iPad and a speech. pathologist to come into her home and work with her son. And within nine months of using the iPad and

the therapy, she was able, her son was able to say, Mommy, I love you on the iPad to her. That's such an awesome story. And all for the price of an iPad, money well spent. That must have just made you feel so good. That was a very special moment for me. And realize I was on to something. It's like, you know what? I need to be able to do more. that really was the driver behind us wanting to help more people. And again, we're 100% volunteer organization. I've been doing this since 2010. But again, you know, it was like we weren't even,

autism rate it wasn't even to be born at the time. We were just a podcast, but, you know, we want to, I just took money out of my own pocket and I did this. And I said, you know what? We got to become a nonprofit so we can do more. Well, that's something to really be proud of. And it's really awesome. the accomplishment that you've done with hope saves today being a tremendous podcast and now you've

got autism radio where you speak with people that help people all time you know i think the big thing for me too was you know once after a certain point started bringing some experts on our program um you know we've had a lot of i've told you a lot of celebrities that've come on our show as well and sharing stories of hope as well and inspirational stories um but you know just having a lot of the experts come on the program and having our listeners write in, you know, questions for them and being able to answer them on the show was real, real a big deal too because, you know, coming from a professional lens and some of the parents were able to apply some of the, you know, kind of feedback and or information and it actually helped them, which was,

which was really special because, again, it's all about connecting the dots. I always kind of consider myself, you know, I know a lot of times, you know, your autism is a, a puzzle. And I know some organizations, a lot of people use the puzzle pieces. And I always said, you know, I just want to be a piece of the puzzle. And if I can help connect some of the dots or connect that puzzle, you know, that I'm doing my job, you know. And again, I love what we do. Again, I do this as a volunteer. And, you know, who knew our program was going to reach over 18 million people worldwide now? I mean, it's incredible that it's a monster number and, you know, been doing it really. long time now and you know kind of became you know the first radio syndicated radio show in the world

that talks about autism so i'm i'm kind of proud of that obviously and it's a great thing to be proud of you've done some major accomplishments in helping people and i know you feel this way just as i do after you've talked with somebody or or felt like you've helped somebody there's just that warmth that you have that you know that you've done something that's made a different for somebody in their life. Yeah, no, it's a great feeling. It almost becomes like a drug, Tony. I'm going to tell you, like, once you start doing it and getting some people, again,

giving you feedback that you've helped them through something, you know, I remember my daughter at one time I was doing, I probably recorded 200 episodes. And it was a lot. I mean, because, you know, I'm doing a show every week. And again, being syndicated, you have to do a new program every week. That's part of the contract obligation. So it is a lot of work. and my daughter and I said, you know, I don't know I want to do this anymore.

And my daughter says, what, dad? And again, I have a daughter who's two and a half years old and my son. She was probably about 12 at the time or 13. And she said, Dad, you got to do this. People rely on you like, you know, what are they going to do without you? And I was like, oh, man, she just pulled it to heartstrings. And I was like, you know, you're right. Well, if she sees it at 12, that says a lot because most 12-year-olds, they're not paying attention to what their dad's doing.

when they're paying attention to their friends. So I can say that, yeah, what you're doing is really awesome and helps a lot of people, no doubt. Well, I brought her into the charity, right? You know, she did a lot of the volunteer events that we had and a lot of the fundraisers. We used to have, you know, every year we'd have like kind of like a, almost like a prom. And it was like a dance. And she would volunteer and come. And we would just, you know, the kids would have a blast.

And that was really well what was all about. and actually the parents could go off in the section and kind of relax and we had tons of help on the floor, you know, between AIDS and therapists and stuff and people that volunteer their time where we were able to, you know, this is like, it's funny because Tim Tebow Foundation does this big thing every year. We did this probably 10 years before Tim Tebow even existed. You know, so, but, you know, we were probably one of the first ones to start doing these proms back in the day. And it's been a big, big help to that. the community in a way to celebrate the end of a year or two.

Well, that's awesome because I've always been a supporter of help your local community as much as you can. So how old is your son now? So my son is actually 20 years old. He'll be 21 next year. And that's a scary thing because any parent that knows that's listening to your program, you know, at the age of 21, the age out of the educational system. and there really is a lack of services after your child turns 21.

There's very few far in between facilities that have 21 and over available to them. Depending on where you live, some states are better than others that have some facilities and places, but there's really very few. It's a shame. So, I mean, one of my goals, and I think I maybe I shared this or maybe I didn't, Tony, But, you know, I've had plans about five years ago. I put together a plan, which hopefully is going to come to fruition one of these days, really trying to work on it.

But the whole village where the whole village would be developed for individuals that are 21 and over, have a place to go, whether it's a day program, they can go there for the day, whether parents are working, or even have, you know, again, some apartments where they can have some living quarters. So that is kind of my vision. again, working in the senior living realm world for the last, you know, almost 10 years now, you know, learning that kind of side of the business and understanding that is I would like to kind of replicate almost that model, but into, you know, disabilities, you know, where they have

a place to live. And the unfortunate part is there's very few of them around the country. Yeah, this is true. This is true. So have you heard of our place, Nashville? Yes. Yeah, I've heard of it. Well, I've spoken with her several times, and she tells me that she's one of the few places in the country that does what she does, and that's get housing for autistic people and special needs.

Yeah, and it's really, it's almost like an epidemic we're not really discussing, honestly, because, you know, you think about it in, you know, national, it's one at 55, you know, children are being diagnosed with autism. Now, again, depending on where they are in the spectrum, depends on their level of care. Someone like my son, he needs high level of care. So he needs, you know, he can't live on his own. So he's going to require full care. And I think the greatest fear for me, and I always say this is that when I'm not here, what happens to him? You know, who's going to take care of him? And, you know, because I'm not going to live forever.

Unfortunately, I hope I live a long time, but, you know, I'm taking care of him. And that is a big fear because I am his caregiver. You know, I do all his hygiene and I brush his teeth. I give him showers, you know, I'm responsible for a lot of his care. Sure. And, you know, he's unable to really take care of himself, you know, in a lot of ways. I mean, now he can do some things, which, you know, to some people they take for granted. Like now he can tie his shoes.

He gets himself dressed. He remembers to put on deodorant. He still doesn't know how to brush his teeth right. So he needs help with that. He needs his teeth brushed by me or my wife. You know, and again, he can't feed himself really. I mean, he'll eat anything. He doesn't realize what he's eating.

He'll just eat. So we do all his cooking and, you know, making his food. So he needs a lot of care. Yeah, there's a lot of things out here that we take for granted. And I think the biggest thing we need is understanding and discussion because we need more people to understand what parents like yourself have to go through. and if we can just get people to the table to discuss it and get a better level of understanding of the needs of autistic people at different levels, because there are different levels of the spectrum, as you were saying,

then maybe we could make progress and really help those that need to be helped. You know, you think about this, and most people don't, you know, obviously, you know, we're not talking about autism being a disease, but like when you look at other things like cancer and you look at, at other, you know, there's so many centers. There's billions and billions of dollars being raised. And then when you look at autism, it's like the lowest one when compared to all the other charities and all their causes. But yet, we have one of 55 being diagnosed with autism. That's a huge number. That's a huge number. I've also heard that one in seven people worldwide either know someone or have someone that's autistic in their family.

I know. Those are big numbers. And I think it's just being, you know, I think sometimes and again, maybe, you know, obviously working in this world in the autism field for, you know, 16 years now and doing the show. You know, I look at autism, obviously, you know, April, it gets its kind of highlight for the month of April. You know, we kick it off with World Autism Awareness Month. And then, of course, you know, then we have Autism Awareness Month. And then we have World Autism Awareness Day. you know, which is April 2nd every year. And, you know, it's good that we have that. But then what happens is as soon as April goes away, it's like, well, forgot. You know, and the thing is the year, you know, we're still going through this each and every day and we live it. So, you know, it's a little different. And I guess, you know, you think about cancer, obviously, just using that. Obviously, we've probably all had somebody, unfortunately, either died or had cancer at one point. It's very, you know, it's very prevalent. And we understand that. And definitely we need to come up with a cure and treat. better treatments and all that. It's very, very important. I just lost an ant recently to cancer, unfortunately. And, you know, it's, it's, you know, but I almost feel like autism needs as much attention as something like that because it is an epidemic today. Absolutely. My opinion is this. When I was working on my video, I told a friend of mine, I was going to include autistic people from Nashville in my video. She says to me, how can you do that? My response was, why would you ask that? She says, well, autistic people look just like you and I do. So I think that people have a hard time

digging into their pockets to give money to a charity that the face of that charity is, well, looks just like you and me. So the only difference is, is they don't realize. that part of the issues that need to be addressed is on the inside, not just the outside. Yeah, it's interesting because, you know, we talked about, I was talking to a parent who has a child with Down syndrome and autism, you know, so as dual diagnosis, obviously was born with Down syndrome. And, you know, they raise actually more money for Down syndrome than autism. And because I think you can identify, you can see it, it's visible. Yeah, and that's unfortunately what you.

makes it really rough for charities that support autism to get money. But it does make us creative and the more creativity we can come up with, hopefully the more money we can raise to help the autistic charities. No, absolutely. And, you know, one of my favorite things, I don't know if I got a chance to tell you this, but we do hope for the holidays, which this year we did 135 families that were able to help for the holidays. And that was like so cool. We picked 12 families this year to go to their houses. And we brought gifts, you know, Santa comes with the elves and everything. And it was really just a really awesome moment to be able to go. And then also give the family some money that they could use it for whatever they want and food, you know, whatever it was. And, you know,

we were able to do that. And it was just, it was just amazing when you get to go in someone's house and actually see their situation and be able to give them some relief and some help, you know, real help that makes a difference around the holidays. and putting a smile on her face is, you know, to me is worth it, you know, nobody could give me an amount of money to replace that feeling, honestly. Somebody can hand me a million dollars. I don't think I'd be as happy as I was that day. I've got to be honest because it was, it was the most gratifying,

just fills your heart with love and just, I can't even put it to words, but just it's a special moment to be able to do that. And honestly, I consider myself lucky to be able to experience that. in my life because, you know, I always say to myself, you know, those moments are forever ingrained in my heart and my soul. Yeah, and those type of moments you can't fake. You know, they're real, they make a difference in people's lives, they make a difference in your life. And, and it's just something that's, that some people never get a chance to feel that kind of special. Yeah. No, it's funny. You say,

that. So I got an email from one of the moms that we helped. We went to her house and she says, you know, you have no idea. Like, we'll never forget this moment. Like you came in and it was, and it seemed like it's always interesting when you go into someone's life and help them. It seems to be at the right time, the right place. Like they were going to really like dark times as a family and everything. And we just happened. You know, the one mom has two disabled children and, you know, the grandmother mother was sick and it was just like the perfect storm and we went in there and we we gave him money for for all kinds of things and we brought a tons of presents wrapped and gifts and it just like it just looked like a weight was lifted on mom for that moment and I could feel it in the hug when she gave me the

hug like you could just feel the warmth and the love and it was like oh my god and it was like such a tearful special moment like oh my god it was just it was amazing it was like it was almost like the magic like you know you see these movies in hollywood like these christmas stories and all these things that was the real thing like that was the real deal and it was like and to this day i still hear from her like she still hasn't forgotten and christmas was what how many months ago um you know and she's still like on a high from that she goes that got me through every day like i think about that day and how special it was and her daughter you know she can speak but she's limited but she's she loves Santa and it actually was again it was like a perfect moment because the day before

Santa was supposed to come by in a fire truck and I guess she was waiting outside for hours and it didn't go down that street and never saw him and then Santa just happened to show up at her house the next day with gifts and spend time in her house and her daughter was just blown away and she says my mama Santa in my house and she was so excited it was just an amazing special moment. Yeah, and it's moments like that that they will remember, but so will you, because it's just not every day that you get to do something that's just that good. No, it's true.

I mean, just telling you a story, like, I could feel the warmth of my heart because how that felt, like, even for me, I need to sometimes remind myself of that moment, too, because, you know, we go through our days, we're busy, we're stressed, we're this, were that and like when I think about that one particular family I mean they're all special but that one particular family with that that situation it's just like wow that was just one of the best days of my life and I'm sure it was probably one of the best days of that family's life as well you know one thing she said to me is that I think it gave her faith of humanity again you know it really it showed her that you know there's there's people out there that do good things

Well, I really like what you're doing. I think what you're doing is, you know, not just for your son, but what you're doing for other people, you know, with your charity and with your, with your podcast. I think, you know, I think that makes a difference. And if you can make a difference the end of the day, you know, then it's a win. Absolutely. And Tony, you want to got to come on, Hope Saves a Day, too, and be a guest on our show and talk about your journey. Again, I know we're talking a little bit about it on your show here, too. but you know you're a pretty interesting guy and done some pretty amazing things and how you got here with this platform is is kind of special so you're doing good work too remember that well i appreciate that and i really do appreciate having you join me on this show today

just a great conversation great information and there's just so much more i know we could have got but we just unfortunately ran out of time so thanks for being here oh well thank you tony thanks for taking the time out of your business scheduled to listen to our show today. We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to tonymentor.com, contact, then they can give us their information so one day they may be a guest on our show. One more thing we ask, tell everyone, everywhere about why not me, the world. the conversations we're having, and the inspiration our guests give to everyone, everywhere, that you are not alone in this world.