Tony Mantor: Why Not Me ? - Dawn Rix: Harmonizing the Melodies of Motherhood and Music Through the Autism Spectrum

Episode Date: May 1, 2024

Send us a text Every family's journey is unique, yet some stories resonate with the universal rhythm of resilience and hope. Joining me today is Dawn Rix, whose melodious life as a singer-songwriter intertwines with her profound role as a mother to a son with autism. Dawn's tale, harking back to a time when autism was a whisper rather than a conversation, offers a deep-dive into the realities of an unexpected path; from her son's diagnosis to the dissolution of her marriage and her unwavering pursuit of music. Her voice, both literally and metaphorically, provides a stirring soundtrack to a narrative of perseverance and enlightenment. Amid the personal stories, my own saga unfurls, detailing the grit required to fight for my son's educational rights. The hurdles leaped include threats of expulsion due to misunderstood outbursts and the relentless pursuit of an appropriate learning environment, crossing state lines if necessary. These experiences underscore the importance of armoring oneself with knowledge of legal rights and the urgent call for improved transition programs for our special needs children as they grow beyond the school system. It's a testament to the emotional and financial tolls that shape, but never define, our journey as parents in this realm. As the conversation shifts to the present, the intricate tapestry of life with an adult son with autism is laid bare. The narrative is one of constant vigilance and the hidden power of music as a therapeutic force. The quest for suitable residential care and the move towards a state with a stronger support system illuminates the often-unseen struggles and the strength required to navigate this landscape. It's a poignant reminder of the delicate balance between caring for a loved one with special needs and preserving one's own well-being, all while the familiar undercurrent of love and dedication persists. 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.

Hi, I'm Tony Mantor. I'm very proud to have the Autism Society sponsoring this episode. The Autism Society of America is dedicated to creating connections, empowering everyone in the autism community with the resources needed to live fully. With 136 children diagnosed with autism, the Autism Society is dedicated to promoting acceptance and increasing accessibility through education, advocacy, support, and community programming. The Autism Society's vaccine education, initiative has provided over 30,000 accessibility resources and trained over 5,000 healthcare providers to advance health equity through inclusive and accessible care. Together, we can work towards a world in which everyone is connected to the support they need when they need it.

For more information, go to autismsociety.org forward slash VEI. That's autismsociety.org forward slash VEI. The connection is you. 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 Mayotaur. Welcome to Why Not Me the World. Today's guest is Don Ricks. She's a singer-songwriter traveling back and forth from West Virginia to Nashville, and she has a tremendous story about how she deals with her 25-year-old autistic son while pursuing a music career. Thanks and welcome to the show. Thank you so much for having to be Oh, it's my pleasure. So let's start off with what age was your son diagnosed autistic? I guess two, about two years, between two and three years old. It was right after he had, it was right after his second MMR shot. Okay. He had been babbling and talking, kind of talking a little bit, saying a few little things. Everything to me was normal because he was my first child.

He was a healthy pregnancy, the whole nine. And it wasn't until we went to a well baby checkup. And they said, you know, we want to do some tests. We want to check his hearing. And we want to check a couple other things because he should be talking more. Like, well, he was, but it just kind of stopped. The eye contact kind of stopped. And they sent us up to WVU to Morgan Town to be evaluated.

Okay. We went in this little room and they watched him play. Of course, they asked us all kinds of questions and that kind of thing. And when they finished up, they came into the room and they said, well, we've diagnosed him with autism. It's a neurological brain disorder. There is no cure and we don't know the calls. Right. Our best suggestion would be to reach out to other parents who have children with special needs or autism for support.

Here is a blue folder. And in the back, there are some phone numbers on there that you can call. If we can help you in any way, let us know. And the earlier intervention, the more likely he is to have a normal life. send us on our way. Wow. So this would be the late 90s, right? That would have been, let's say, he was, he was born in 97. That would have been 98, 99, between 99 and 2000. About the time that autism really wasn't a well-known, talked about situation. Right. I mean, it had just started getting some attention. And then, of course, you know, a few years later, it went all out about as

asperters and the whole spectrum thing came to life. And then, then you had people saying, well, my, my kid's not autistic, he just has Asperger. Everyone kind of made this huge gap between it and really, it's all on the spectrum. It's just, where are you on the spectrum? Right. And that was the longest trip home of my life because my thing was, here I have this beautiful brown-eyed baby boy, right? Right. And how are we going to dive in and how am I going to fix this was my perspective. Okay. My husband's perspective at that time was, I need to go to work to make money to fix the problem. and it was more like I was mad at my husband because I felt like he felt that my son was the problem. And as his mom, my son was not the problem.

Like I wasn't in denial that something was going on. I was just in shock. And my whole thing was no one's going to put a label on this kid. We need to dive in and study and do research and all of these things. And, you know, it wasn't locked after. And maybe meant maybe many people have gone through the same thing. I don't know. Right.

You know, my husband, his way. of dealing with it was to go to work and not deal with it. Okay. My way of dealing with it was to die full speed in and it became my life and we divorced. It wasn't for the lack of love per se. It was just we both had two different aspects. Right. I realized that now, you know, 20 years later, we ended up having a daughter together, but like all this time has passed and I've basically been a single mom raising my son. You know, it's been pretty pretty interesting. So what you, you just said is very, very common. You know, unfortunately it's very common. But when that happened and you were kind of by yourself, so to speak, trying to work with your son, what was your next

steps? What did you do to try and find out what you could do to help him and did some of those things work? Well, I'm going to tell you, I'm, I just want to tell you something that happened to me. So I took that blue folder that they gave me and I flipped it over and I called. I called some local parents and as a newly diagnosed mom of an autistic kid, like the first parent I called, have you tried this, have you tried that? Have you tried this? Have you tried that? Have you tried that? Have you tried that? Have you tried that? And I mean, just blew me away with all of these things and I was so overwhelmed. Right. But also, she financially had access to all of those resources that I did not financially have to be able to do those things.

Okay, then the next parent I followed was, don't get me wrong. I want to say 90% of people you reach out to are very supportive. Right. Every kid is different. Sure. And I dove in, I mean, I researched. Of course, you analyze everything. I'm thinking, okay, I never smoked.

I never did drugs. I had a perfect pregnancy. Sure. And, of course, you're beating yourself up because there's some self-guilt to it. thinking, has this been in my family and we didn't know? It went on diagnosed. Like, there's a lot of that. Absolutely. I was just really big on whatever connection and whatever I had to do to help him be as independent of possible and to learn, you know, to do whatever. And I was just very creative and music saved me. Okay. You know, when he was young, when he was little, of course,

and we were trying to give him to talk again. That was back in karaoke was a big deal. So, I mean, I had 50,000 songs and my music equipment set up. you know, I'm singing all the time. And music videos, the MP was always the favorite, right? Well, he had his favorite. He had books and Don and all the country music where that was his favorite. So I bought one of those little plastic play school recorders with the microphone for him. Right.

And on my microphone, I would start making sounds like, hey, hey, and he would get his attention. And then he would get curious. And then I would use his microphone and say the same thing. And then I'd hold it up to him. Eventually, he started going, ha, ha, ha. And he would mock me. Okay. Well, then we would watch the words on the screen.

Right. And we would eventually, before he would even communicate with us, he literally would sing a song, word, no word, better than not the drunks at a karaoke bar. I mean, it was like, it was like that good. And the crazy part in that even to this day, he's a walking encyclopedia of music. Wow. If he hears a song, he can tell you the year, what's on the cover, the singer, all the above. And Country Weekly Magazine, he could tell you, like, every year for Christmas, that's only one. It was a Country Music Magazine.

He'd say, he'd say, 1993. Okay. He'd tell you the artist. He'd tell you who was in the review section and everything. He wasn't bored for 1997. How did he know all these things? That's good. Back to your question, I'm sorry, but I got creative.

I dove in and I, whatever we could come up with that worked for him. Yeah. Through the school system at a younger age, there are more resources. You can, you know, work together with their individualized, you know, educational plan, whatever. And you can really, really dive in. And when you have some really good features or aids that make a connection, I don't care about their paperwork or certification. To be honest with you, that means nothing to me.

But boy, oh, boy, if you can connect with my kid and get something out of them, you're saving great. I just really work a lot with them. I've dedicated my life to trying to make it possible for him to be as independent as possible. The behaviors and stuff like that all came later. So when he was younger than only three foot tall, if he yelled or threw a fit, I could handle it as a single mom. Yeah. Okay.

But as he got bigger and now he's six foot two and he's three hundred ninety pounds. Wow. When he puts the TV play the door or kicks your windshield out or cracks you in the back of the head, it's not like a little kid anymore. Right. We've had some severe things happen. Being a single mom, one of the other things is, when they're transitioning from like the teenage years, onto adulthood when you travel somewhere and you need to go to the bathroom, I can't go on the men's bathroom with him. Yeah, yeah. So there's a lot of things that people don't think about or need to

unless they're in that situation. I mean, I could talk for hours. I would be on your podcast for 15, you know, 15 years talking about stuff. Now, the early ages, you said that you had to work with him through karaoke to get him to start talking everything. Did eventually you get to the point now where he's verbal and there's no problem communicating? He can tell you what he wants through a drive-thru. as far as to eat. He can understand things, and I think he could read even when he was little, but he will not have a conversation like you and I are having. Okay.

You might get one or two questions and answers out of them, like that kind of exchange. Right. But then that's it. So I'm still guessing because he voiced his wants or needs all the time. Right. You're still guessing, does he have a headache? Does his stomach hurt? Like you can ask those questions, but sometimes,

you're not going to, you're just going to get, no thank you. A lot of times when even to give him instructions, it's mainly generalized instructions. Right. If we give it to him directly, it's almost as if he fears saying the wrong thing. Like he has a little bit anxiety about that. So if I, like, if I wanted him to get his jacket off rather than say, Steven, it's hot, take your jacket off. Or do you want to take her jacket off?

I mean, he would yell. But if I'd say, who it's hot in here, he will immediately take his jacket off and say, oh, it's hot. And I'll take his jacket and he'll say, thank you. So it just comes down to a matter of knowing how to approach him and suggest things, making him think his own idea rather than it's yours. Yes, exactly. And again, everyone's different. I have a friend of mine whose son, you know, years ago. She came to me and she said, oh, my gosh.

And she was crying and everything. And she said, I'm taking him to get checked. I really think he might be autistic and this, that, and the other. And, you know, I'm very supportive of her, you know, he's still your son, no matter what they say. And resource-wise, for parents out there who might be listening to this, who are newly diagnosed, don't let the label scare you. As a matter of fact, it can work in your favor.

Right. Because without that label per se, you're not going to be able to get your child all of the resources and help and therapy is that they are going to need to benefit them without that label. Yes. On paperwork, you have to have it. It does not mean that your child's going to wear that label around their neck. It just means in paperwork, you're going to have to have it. And that was something that was

really hard for me at first, because I didn't want to label my kid, you know. But when it came down to fighting and advocating for him, I had to have that label in order to be considered for, you know, like the waiver program or for the different things that, you know, the speech therapy, like those types of things. What you just said about verification and all that is so true. It helps people get things that are needed more so than if they go undiagnosed. So there's two things that people do. They put people in schools that have good special need classes or they do homeschooling. Which one worked for you?

In West Virginia, well, we started with regular kindergarten and tried that, but then it went to the special needs classes. We changed schools. He went to an elementary school and they wanted to expel him illegally for making loud outburst. And I had to fight the school system because initially they said that was the very best school that they had that they could offer him. And the only thing they were offering for me was to kick him out for me to find another school or change schools. Right. And as his mom, I said, you all had just told me he's in the very best school you have to offer. Why would I go to a different

one of your schools? Sure. If he's already at the best and you're expelling him illegally, totally illegally for loud outburst. They, knew they didn't have a leg to stand on after we went back and forth. They tried to hold an emergency IEP meeting. Okay. Then what happened? Like called me in to talk, but when I got there, there were like five or six people. I didn't know. And I'm like, what is this? Right. They said, well, they're part of our plan and we need you to agree to this. And I ripped the paper up in front of them. And I said, I refuse to agree with this. Right. And any of you that I've ever worked with my kids should refuse it also because it's a cop out. And anyway, long story short, I battled for my son. And I made the

local Board of Education pay for him to go out of state to a Grafton school, which specializes in all different types of special needs. Wow, that's great. They knew that if they didn't, I was going to sue them. And I'm not too happy. I'm like the most, I'm the easiest mom to get along with until you're not doing the right thing. Right.

And then it's not about that anymore. It's about doing the right thing. Sure. I drove him. They actually came to me and said, for an allowance of X amount of dollars, would you be willing to drive him to school because it's less expensive than for us to put a bus and an aid out on the road to take him. Well, that makes sense. And I said, well, check your records because you also threw him off the bus because other kids, you said, were scared of him making loud

noises. So, of course I'm going to drive him. So he ended up going to Bracton, which was wonderful in the state of Virginia. And I drove him for a couple years. And he graduated from there. But once that transition of no more school and you reach 21 or 22 years old. You opt out. They're kind of, you're left out in the wind. Exactly. Not to complain too much about West Virginia, but it has been my hometown. I had been trying to get to Tennessee full time for years, but with special needs programs

and things like that, they offer no transition time. Right. Once you leave the state and end your whatever it is that you're getting, you know, whatever insurance or whatever, then you start over again. Right. We were on the waiver program, and I'm not sure if your listeners know about the waiver programs, probably do. But we were on the IID waiver program in West Virginia. We were on the waiting list for 17 years.

Wow. Yeah. We were number of 419 waiting just to get some type of not personal money. This was just money that was being held by the state for disabled people who needed it for their respite care and all of those things. and they were just sitting on it. We had to fight for that. We had to go through Congress and all this stuff. Anyway, they released that right when COVID happened.

So we were not, we didn't have any of the resources. We were granted the resources and then COVID happened and there weren't our resources. It was like, whoa, what just happened? Wow. And so it's still here in our state, West Virginia and I believe Michigan are the only two states that actually will pay a parent a certain amount of dollars per day. on the daily care support system. Right.

That is $10.98 an hour. Wow. One of the biggest things that you did say, and I think that everyone really needs to get this, because it's hard to deal with the emotions you're going through. So you have to learn how to calm yourself down, not yell at people, be determined, and advocate for your son or daughter, because that is who you're working for. Yes. One of the best things I can say is be prepared, don't feel intimidated. You know your child better than any person sitting in the room. Right. But remember, you're on the same team. You all

are working towards what's best for your child. Right. They're not against you. Now, it may feel like it. It may feel like it. Yes. But you need to keep battling. Right. And battling and battling. And I don't say battling like in a mean way, cutting them out and all that. That's not going to work. It means be prepared, do your homework, advocate, know the law. Yes. Know the laws.

They will be blown away when you say, oh, no, uh-uh, section, such and such of such and such means, blah, blah, they're going to be blown away by that. But know what your child's legal rights are and have access to someone who legally could represent you if you needed them to. Right. And I haven't had to have that yet. which I'm glad, but I've called. I've had to call before because not everything's going to be easy.

And even until this day, here in West Virginia, there's no residential placement that's available. Right. At least not for my, when my son, when we put in for him, he's denied, denied, denied, denied, denied, denied, denied, denied, denied, denied. That's pretty much all across the country. Yeah. And it went from, it's either low staffing or we can't offer the support or we don't have the funding. There's always something. I talked with some friends of mine that run a place called Our Place here in Nashville.

They put together housing for special needs, autistic people, that type of thing. I've read up on them. I've actually emailed them before. But go ahead. I'm sorry. I didn't mean to interrupt. I got excited because I'm like, hey, I've recognized that. Nice people.

You couldn't ask for nicer people to deal with. That is one thing that is a very similar story throughout this country is finding places. for your kids to be able to have some housing to where they can graduate into living by themselves and functioning and having some help that way it's a very very tough thing that needs to be addressed you know i i always said that if i could hit the lottery that i would buy some property and i'd make it like it's your own little village you know to house kids and i say kids but you know what i mean younger adults they were transitioning so that they can get out because you know as parents were not getting any younger obviously.

Yeah. And the biggest fear is, you know, who's going to take care of your kid? Right. Right. And right now, while you're healthy or somewhat healthy and able, you want to be able to advocate for them and find placement for them and have a say so in their future and their outcome. Yes.

And it's devastating when your hands are tied. Yes. And you can't prepare for that because there is nothing. It's a common thing I hear all the time. time, so many people are so fearful of what happens to their kids if we aren't here. Everybody thinks about that. Oh, yeah. Now, he's out of school now.

He's transitioned into, you know, the living situation that you have now. But like you said, he's 6'2, 390 pounds. And when he has a meltdown or he has some issues, he doesn't realize his own strength probably. Have you had situations like that where he's hurt you not meaning to or hurt somebody not meaning to and you've had to get some help there. Yeah. Unfortunately, there have been times when I've ran to the basement and locked the door and he had pushed the door and the frame down trying to get to me.

Yeah. That was a few years ago. About seven months ago, I guess it's been about seven or eight months ago. He had never really hit me before. He would hit the wall or, you know, push the TV, punch a hole with his head. self-abuse, you know, kick his beat, bite his arms, like that kind of thing. But he actually gave me a concussion. Oh, wow.

And we had to, I had to go to the emergency room. And while I was there, of course, the crisis people come in and they're like, listen, you're going to have to. So on two different times, which I really haven't shared with anyone, but two different occasions, We've literally had to do an emergency kind of hearing. Luckily, we had a judge that actually came to the hospital rather than whatever. But it was the scariest thing ever. They had to serve in papers.

The police came and they had to shackled his ankles and put the handcuffs on his wrist. And, you know, to transport him to the state hospital to be evaluated because there was nothing close by. And I mean, it was devastating. Of course. To even have to think about or to do. But it was a situation that... Your safety. You know, you've been crying out for help, begging,

begging for some type of assistance or whatever. And, you know, they say document everything. Well, I have a whole book of documentation of how many 911 calls we would get when we would have an episode. But the problem was by the time they would get there, he would be on the meltdown part of it. Right, right. And they'd get there and they'd look at me thinking,

and I'm the crazy one. Right. Sometimes I felt I was the crazy one. And I don't mean crazy, but you know what I'm saying? Sure. Like they'd get there and he would be like, yes and smiling at him. And they're like, what's the problem? You know, until they look at the blinds knocked down and the holes in the walls

and the TV knocked, you know, busted up and, you know, the mirror busted. And I've gone through, I tell you what, in two years time, I had to replace five automobile windshield. Wow. And I say these things not to complain. But it's real life. Absolutely. It's real situation.

People on the outside are so quick to say, oh, I would whip that kid, blah, blah, blah, or I'd put him away or maybe bust him in the head. And I, you know, I had someone that I was seeing for a while who, you always said, oh, the best thing for him would be duct tape and a hammer. And I never would even introduce them to my kid because of those comments. And I know some people think, oh, ha, that's funny and stuff. It's not. Well, they just don't get it.

They don't get it. And here's the thing. Then you have those who want to say, did you do this? Did you do that? Did you do that? Did you do that? Did you do? And they mean well.

Right. But at the same time, it's like, listen, if you can contact someone and you can do those things, go right ahead, feel free. But there is not a rock that has not been overturned by me. Right. Or better yet, someone will say, so what triggered it? And you're just sitting there and staring back at him. Right.

Thinking if I knew I'd be a millionaire and famous because I would then find a Like, I mean, I like, and you can narrow it down and you can kind of pinpoint, but right, right. It's just very hard and it's very, it's something that people don't know what they don't know. And so it is important to kind of just bite your lips sometimes and then just try to educate people. It is. Or just to try to inform them. Like, I would love to go and crawl states and just talk to EMS and police officers and give them just any kind of little tidbit things that are helpful in those scenarios. because when they're walking up on something, if I wasn't there, at one time my son had an incident,

and if I had not been there to explain to the officer that he was autistic and it's this just happening, they would have shot him. Right. And I can't say, I cannot say even as his mom, that I would have blamed them for being precautious, but thank goodness I was there or the outcome would have been different. Right. You know, but at the same time when he had that episode at that particular time, I mean, it took six grown men and two shots from the, from the EMTs of stuff that they would usually tranquilize an elephant with in order to calm him down just to get him halfway on a journey to get to the hospital.

Now, that's not all the time. And I hate to talk about the bad stuff, but I would be lying if I said it didn't happen. This podcast is about reality. This is things that, you know, people don't want to hear sometimes. Yeah. But sometimes they need to hear it because I had one person say to me at one time. they thought that they were the only people that was going through the situation with their son in the world. They weren't. And neither are you. You know, so this story that you're telling, there's probably so many

people out there that have very similar situations that need to hear this, you know, on what they need to do or how they need to try and compromise on things, try and work with police, like you said. It's hard to watch. It's hard to see. I mean, there's so much that. at my heartstrings, you know. And I think like 90% of the time I have a happy go lucky kid. I say kids still, but you know, an adult and he's waving at the grass when they go by. But I also, I need to be careful when we go into a store. I need to know where the exits are. I need to know if there's a woman coming down the other aisle because I don't want him to be curious. I mean, he's never been aggressive in a way that like he wanted to like throw someone down

and rape them. Right. But he has been curious and reached out to touch their top or whatever. And I'm frantic. As a mom, my nerves are on edge because I have to prepare. I have to pre-think, pre-plan, and I have to feel out his mood to know whether or not today's a good day to walk through T.J. Max or today is a good day for him to go through goodwill or whatever. Right, right. We have been at stores that a few, I won't take him back out of courtesy for the store

because of an outburst or because, you know, a soda went flying or whatever. Yeah, yeah. And then I'll tell you this, you know, as a mom who's trying to. to work and then also be a singer and to do all the other things. You know, the music part keeps me somewhat sane. It's very therapeutic for me. But what people don't know is trying to commit to even this phone conversation with you. Everything is so unpredictable. It's so hard to commit to something because you never know what's about to happen. And as an entertainer, when I was playing every single weekend with the band, there were times I literally would throw a bag in the car.

just had, he just had this major outburst. Sure. The holes in the wall. However, soda in my hair. Right. Whatever. And I would literally change clothes in the car 20 minutes prior to walking on stage to do a four-hour show, putting my clothes on, throwing some makeup one, literally sliding Pepsi Cola off the, you know, the strand of my hair,

stepping up on stage, putting a smile on my face and entertaining for people for the night. for the night praying that they can't tell what exactly happened and they had no idea what I went through to just make $200. Right, right. I get it. He's 26 now. What do you see in the next four or five years? I mean, you've got a situation of where he can be volatile and then he can be just like anybody else, but you never know.

What do you see his future being? I mean, what do you see your future being? Because there's such a balancing act that you have to do in order to create. something that can be tolerable for both of you and hopefully have a better ending than what you're hoping it could be no I don't know and and normally I would know normally I'd have a plan but but everything we can only control what we can control and there are no there are no openings residentially for him right and when there are openings it tends to be that for some unforeseen reason he's

not accepted whether it's they don't have one-on-one staffing is typically the answer. It just always ends up being something. Right, right. I had thought about just literally having to bite the void and pack up and moving to another state, which is exactly what our neurologist recommended. Uh-huh. And of course, my, you know, my thing would be to be a national school time,

obviously, but Tennessee was not on the greatest list either. Right. And then we'd have to start all over again. So at this point, I don't know. I mean, I've even had some health issues lately that have been very concerning and very scary, and I just don't know, but my hands are tied. Do you have any support, you know, family or anybody that's helping you here so that you're not all alone in this?

Sadly, but realistically, my dad is 83 and he lives with us. And without him, I would be lost. But he also is 83. And his health is getting, you know, he's, you know, he's a strong, strong as a bull and hard-headed. Okay. He said he's going to live to 100, and I hope so, right? Right, right. But, you know, he's starting in, he's starting that beginning stages of dementia.

Oh, that's tough. And I see it. And we don't know what tomorrow brings. I mean, I could be out of here before he's out of here. But right now, he is my main resource and he lives with me. And that's basically all I have. Yeah. My daughter has her kids.

She's busy. Now his dad lives 10 minutes away. His dad is a pastor. His dad has been married. He has another, you know, another son and stuff. And it wasn't until this past year that if I need, at him for something that he would come out and actually spend a few hours with them or whatever. Okay.

But as far as hands-on, even in a crisis, like, it's just me. Okay. Most of my other families in Baltimore and stuff like that. But as far as here, it's just us. That makes it difficult, too. Sure. Even in your planning process. You know, I have a friend or two that I could call in an emergency situation, but most of the time you don't because

when you're in it, you're in it. And there's the time you're pretty private about that kind of stuff, you know. Sure. You have to be in that situation. So you're standing in front of 100 people right now, and you're telling them a little bit about your life story, but you're telling them about your son, but you're really focusing on autism and what people can expect

because they are just finding out that their sons and daughters might be autistic. They're new to the autistic community. What would you tell them? What's your message? My message would be pray every day. Dedicate yourself to your child. Research is great that it's not in the present moment. And I would say just dive in to your child and try everything. Count nothing out.

Everything that you're going to do from this day forward is going to be trial and error. I would also say cut yourself some slack because we tend to beat ourselves up when we can't fix that we tend to beat ourselves up when we feel like we're not doing enough. So touch yourself loose slack. And just be prepared to be uninvited to things. Okay. Be prepared that not everyone's going to understand, but it's not meant for everyone to understand.

And that in a lot of cases, you are that kid's life preserver. Sure. And they need you. And then in the end, you find out that you can learn a lot to them too. because sometimes their little world is a lot nicer, a lot safer place to be than what we are dealing with as adults, you know. Yeah, sure. Yeah, adults can be harsh.

A lot of adults don't know the difference between a meltdown and a tantrum. I think what you're doing is wonderful. It's wonderful and it's well-needed. And I'm glad that you did mention like tantrums or meltdowns and things like that because when my son has an episode, the best way to describe it would be like someone going, having having void raised, like going from zero to a hundred like instantly. Right. And then he would have, you know, act out, you know, whether it be, you know, hitting or kicking

or self-abuse, whatever, he would go through that real high peak. And then afterwards, he would have a meltdown. Right. And then he is actually remorseful. Right, right. And then it's as if nothing ever happened again. Right. And so, and it's like a little mini cycle.

Yeah. And, and, but yeah, for most parents, I would say it's scary. Don't get so called up in the label part of it. Just dive into what works for your child. Right. And it's going to take a lot of adjusting, but your self-care is important and never lose sight of that. It's very easy to get caught up, caring, caregiving, whether it be a child or even an older, older person that you have to be 100% in order to give your kid 100%.

So make sure you take care of yourself as well, health-wise. Right. Well, I really appreciate you coming on. I mean, it's great to have you. Great to have you too. And I apologize. I was late. And I tend to talk a lot about it.

But I, you know, again, I'm an open book. And my social media stuff is out there. And I love to connect with other parents and even ones who are just getting. that new diagnosis and stuff, I'd be more than willing to, you know, to share or help or advocate or just answer questions. Many times back home, I've been at the ER with other parents going through and having a time and just kind of helping them along. So, but God bless you for having this podcast. And, you know, it certainly should be a number one podcast all the time. It's well needed and I'm new. I'm new to learning about it. So thank you for having me.

It's been my pleasure. Thanks for taking the time out of your busy schedule 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.