Shannon Penrod: Autism advice for parents

Transcript for Podcast Episode: 186
Shannon Penrod: Autism Advice for Parents
Hosted by: Dr. Mary Barbera
Guest: Shannon Penrod

Mary: You're listening to the Turn Autism Around podcast episode number 186. We have a special treat today, a woman by the name of Shannon Penrod, who is the host of Autism Live, which is a podcast and a video. Currently the number one rated Autism Podcast worldwide. So you can look up an episode I did on Autism Live from late May or early June of this year, 2022. So Shannon is an award winning stand up comedian. And her world was really turned upside down when her son Jem started showing signs of autism and was diagnosed at two and a half. He is now 19 years of age, and in the process Shannon has done some really cool things. Not only is the host of autism live, but also other endeavors, including a brand new book called Autism Parent to Parent: Sanity Saving Advice for Every Parent with a Child on the Autism Spectrum. She's just a wonderful guest. We had a very nice conversation, very funny and really showing whether your child ends up in college and learning to drive like her son or like Lucas, who needs 24/7 care. You can still have a great life and realize a lot of your dreams. So it was a great discussion. I hope you love it as much as I did. Let's get to this interview with Shannon Penrod.

Narrator: Welcome to the Turn Autism Around podcast. For both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, autism mom, behavior analyst and bestselling author, Dr. Mary Barbera.

Mary: Okay. Shannon, it is so nice to talk with you again and thanks for spending some time with us today.

Shannon: I'm so thrilled to be here, Mary. I'm a big fan of yours, so this is great for me to be here.

Mary: And I'm a big fan of yours, too. So I was just on your show, Autism Live, and we're going to talk about that in a little bit. But why don't you tell our listeners about your fall into the autism world?

Autism Diagnosis: Regression and Skill Loss

Shannon: Oh, thanks. It's like we all have our origin story. Right. So I was, I guess, a late in life mom. They were telling me that it was a geriatric pregnancy. I was 39 when I got pregnant and 40 when I had my son. And he was a baby that I had wanted forever. But circumstances just didn't allow it. And we had been through a pretty rough miscarriage before. So this was just divine to the angels singing. So happy to have this baby. And we. They scared us half to death, the whole pregnancy, telling us all the things that could go wrong. But in a way, I think that actually helped us long term, because you know how people always will say to you, oh, you're having a baby. Do you know if it's a boy or girl? And then they will say to you, you know, it doesn't matter as long as it's healthy. And my husband and I started saying, no, we want this baby no matter what, even if it's not healthy because they had scared us so bad. We were like, Whatever comes our way, we want this baby, ya know. So we've been clear on it. But then, you know, he was born and I was so prepared that my mother was born clubfoot. So we were told that he might be born clubfoot, all of these things. So when he came out and he was perfect in every way and his Apgar was a 99, my first thought was I got away with it and, and I kept watching him being concerned about all kinds of things that he was completely typically developing. He was talking, he was saying complete sentences. He sang. He was so present and interactive. And then for us, it was this very slow fall into autism.

Mary: Well, how old was he when he started to lose some skills or not quite, you know.

Shannon: Right around his second birthday.

Mary: Yeah.

Shannon: He slightly before that he had been talking in complete sentences, I would say he would come in. We were in this very tiny condo, but I had this one little closet area where I would write and he would come in and he was a pudgy little elf and he would come in and he would go, "Momma, what doing" Right, it was so cute. And then one day he came in and said, "Mama, doin?". And I remembered thinking, where did the what go? And isn't that weird? I thought language was supposed to go like this, not shorten up. And then the gesture went away. And then eventually he came into the room and he wouldn't talk to me. He would just, like, stand in the corner and go in a circle. And I pretty quickly went to the pediatrician and said, something's going on. And she, of course, as we all know, the story said, oh, it's just you. You're overreacting, you're a late in life, mother.

Mary: First time, baby. It's just a boy.

Shannon: Boys talk later...

Mary: And you're like, He was talking.

Shannon: Yeah. And I was like, I thought that we needed to be concerned if Skills went away. He's fine, you know, he's turning two in, like, two weeks, and then he'll be talking in full paragraphs. Except that didn't happen. And then the language just kept going more and more away. And then eye contact went away until there was a day when I just I was panicking and I said to my friends, I think something's going on. And they all said, No, it's just you. So it took a full six months before. And finally my mom came and visited and and told me that I was a terrible parent, that I had ruined my child, that I had no control over him, that he didn't listen to anything. And he was starting to hit and kick and things like that. And she said, it's you. You're a very bad parent because you waited so long, I wouldn't have expected this. But you're a horrible parent and that causes me to go, no, something's really going on. And by that point, I was you. The river in Egypt. Denial. I was so firmly on it.

Mary: I was in denial longer than you are.

Shannon: Well, you know, and now when I talk to parents and I go, you know, so I was only there for six months and I know parents that are there a lot longer, but it felt excruciating to me. Still does how long I was in denial and my husband was there much longer. Let's be clear about that. But it got real pointed for me when my mother was calling me a bad parent, that I needed help and that I needed for him to be looked at. And then, you know, I said, can we please get an appointment to be evaluated for autism? And they said, yes, we'll give you the first one we had, which was in three months. And that just makes me want to throw things. But now parents are telling me sometimes it's two years.

Mary: Nine months to two years before COVID. And that is repeated pretty much with everybody that joins our online course, and that was before COVID. So the waiting lists have gotten longer in many situations. So three months' wait wasn't wasn't that long, but it just..

Shannon: But it felt like it was.

Mary: Six months plus three months. And, you know.

Shannon: Yeah, it felt like forever. And I don't know about you, but I know for me this is true. And when I talk to parents, I feel that it's true. They tell me it's true. Is that the amount of my guilt that I carry with me every day is the exact length of time from when my gut said something's going on to when I actually got help. And I have to remind myself that that is not useful, that I can have those feelings, but it's not helping me or my kid or anybody else's kid right now. And so I just acknowledge it and go moving on. But I have guilt about like, what? What more could we have done if I had known in that amount of time? But I thank God for you, Mary, because now when parents are in that waiting period, they can take your program and get three steps ahead and be ready for everything that's coming. Because we didn't have that when I was coming up or I would have been there front row center with my hand raised, going Mary can I ask this question. So thank goodness that you are doing what you're doing, madam.

Mary: Well, and that's why I'm doing what I'm doing, because my husband first mentioned and we can link my husband's podcast in the show notes because he was the one that first mentioned autism as a possibility when Lucas was 21 months of age and I told him I never, ever wanted to hear that word again. And fast forward, Lucas wasn't diagnosed until 36 months and didn't start treatment until 39 months. So that is a heck of a lot longer than six or nine months. But once I found out what to do and once I realized that there were no resources to help parents, you know, that's really my mission. And that's why I'm so kind of focused on the parents with or without a diagnosis, but with the really, really little kids, because now we take away the denial. There's much more awareness. Now there's much more. But now, instead of the rate of autism being one in 500, which was for Lucas in 1999, it's now one in 44, I believe. And, you know, and even more kids have like one in six kids have some kind of developmental disability, autism, ADHD, learning disabilities. So it could be something else. And the good news is that the approach that I piece together, a positive, child friendly approach, works no matter what and really empowers the parent. Like, you don't need to go outside of the house to start working on it. So I do appreciate that. And Shannon, we talked about, you know, my approach and my program book and I definitely want to talk about your approach and your book, which is great and your work over the years. But let's go back. So he was diagnosed at two and a half.

Shannon: Two and a half.

Mary: And then did they give you a severity level? What year was that?

Shannon: That was 2006, and I asked for a severity level. There was no such thing then. And the developmental pediatrician who diagnosed him said, Oh, just be thankful. It wasn't. It was her first day of retirement. She was diagnosing him in retirement. And she said, I've been working in this field for 50 years. Just be grateful that it wasn't 50 years ago because I would have looked at this child and said, have him institutionalized. But now, you know, you don't have to do that. There's help and hope out there for you. And I said, okay, well, are you going to give me a pamphlet, a book, or something like what? Where do I go from here? I'm going to walk out this door. Where do I go? And she basically told me to take him home and enjoy him. That is what she said to me. And I asked her specifically on that day, What about ABA? And she made me promise before I would leave her office that we would not do ABA with him. She told me that ABA would turn him into a robot and that he would be tortured. That is what she said to me and I didn't know any different.

Mary: So this is 2004..

Shannon: 2006.

Mary: So this is not that long ago. And like. I did a podcast which we can link to. The Four Myths and Truths About ABA. I've done podcasts with the developmental pediatrician that diagnosed Lucas with a developmental pediatrician that is diagnosing kids every day. I mean, in my experience, the developmental pediatricians who have worked with or diagnosed, you know, Lucas and worked with us have all been very much in favor of ABA. But there are a lot of misconceptions. I mean.

Shannon: There are some that aren't. I mean.

Mary: Was she a developmental pediatrician or was she a different type of doctor?

Shannon: She was a developmental pediatrician. And, you know, I'm grateful to her because she gave us the diagnosis, which gave me a starting point where I frequently fantasize about kicking her with a pointed shoe for put it on the wrong path for a while. But, you know, I mean, that's life. You know, I have to just sort of accept that that happened. And whatever I say her name or somebody says her name to me, I kind of go, but whatever. Do you know? Yeah. There's no bitterness here. I harbor no ill will. Right. I'm a being in progress. I'm working on it. But I do want to say that I wished I'd had your book back then. Yeah. That I wished I'd had that.

Mary: But I wish I had the knowledge back then. Right. Yeah.

Autism Denial, Early intervention, and ABA

Shannon: Right. But, you know, you're leaving it. You're leaving a trail of crumbs for people now, and that's...You're doing a good job now. But that was our story. So she sent us home with nothing, not even not even a Post-it note of where to go next. And so my husband and I were very firmly still on the river in Egypt and was like, I think he's fine exactly the way he is. Which, by the way, you know, that's true, too. But I saw in my son that he couldn't communicate his needs. And I saw clearly I'm a former teacher and I saw clearly that that was going to lead to frustration and that I wanted for him to be able to communicate. And on a selfish level, I wanted to know my child and with what I knew then I believed that the only way that I could know him was through deep conversation. Now, my mind has been expanded on that significantly, but that's what was motivating me then, was I wanted him to be able to communicate his needs so that he would be happy. And I wanted to know my child on every level that there was. So we started on our path and it was circuitous. But, you know..

Mary: You started ABA pretty soon?

Shannon: It took us six months because I had promised her that we wouldn't.

Mary: Six months, and you keep adding these six more months, right? And you're at years later.

Shannon: And so he was three years old. It was a week after his third birthday when we started ABA. And most of it was because I was dragging my feet because she made me promise that I wouldn't do it. And I was doing all this research to find out, were they going to torture him? Because, you know, if you know me, you know that I am not a parent that's going to allow you to even speak to my son in a way that could even potentially hurt his inner ego. Like, that's not happening. I only want him empowered. And you're not allowed anywhere near him unless that's the page you're on. So that took me six months until I met a family that by accident, completely by accident, I'd been literally on my floor the night before at 3:00 in the morning, rocking and praying and saying, God, please show me what to do because I don't know what to do and I don't want to be the parent that messes this up. Please show me. Make it clear. Because, you know, I don't get it. Like, throw it in my face so that I can see where I'm supposed to go. And I promise you, if you show me what to do to help my child, I will turn around and help whoever else I can. Well, that became my life. And the very next day, my job sent me to a house. And while I was there, I hated these people so supremely because their house was so nice. And we were in this teeny, tiny condo and they clearly had a little boy and they, you know, they had a pirate ship in the backyard. And I just hated them. I just thought, how do you have all these things? And there are some of us who don't can't sleep because we don't know what to do for our kids. And at one point, the dad was there and I was having to work at Closet World measuring and designing closets, because that's the only thing I could do in the hours that my son was having his early intervention. And so, you know, and I'm measuring his closet for him and his son's playroom. And he just kept asking me questions like, do you have kids? You know, all the things and you know how when when you believe that someone has a neurotypical kid and you're just in that space where it's not good and everything. He would ask me, I just wanted to yell at him. Yeah. And say, you know, he's like, Oh, so is your son in preschool while you're here? And I'm like, Preschool? We got kicked out of the YMCA when they found out that my son had autism. Preschool is for, you know, privileged special people like you, you know, and but I didn't say that. But then finally, I don't know what question it was that he asked me and I whipped around and I said, You need to stop. My child has autism. My life isn't like yours. Stop acting like my life is like yours. Like crawl off. I was rude. And he said to me, Oh, my gosh. Welcome to the club that you never thought you wanted to belong to. But once you get here, you're going to see it's filled with really amazing people. And I was like, What you talkin bout Willis? Because and then he said to me, My son has autism. You're standing in my son's ABA therapy room. It's not his playroom. I thought YOU had neurotypical son.

Mary: To put, like, the toys and materials and stuff.

Shannon: Thank you. And so and I'm having this moment where I was like, oh, like 10 hours ago, I was on my bedroom floor praying, show me, make it specific. And here I am. And I started asking him questions about ABA and about his kid because my kid wasn't talking at that point. And his kid was almost exactly two years older than my kid. And I said, How is your kid doing? He said, Oh, forget the closet. Come on downstairs. I'm going to call my wife. You need to meet my kid. And the minute I met that kid, I was like, Oh, whatever these people are doing, that's what we're doing. And they were doing Intensive ABA, and so I just went all the way. I was like, What roadblock do I need to go through? And there were many because there was no funding for that back then, and nobody was giving out 40 hour programs for ABA back then. But we fought and fought and fought until we had a 40 hour program and we fought and fought and fought to learn everything that we could learn. And it was hard and we tanked financially and it was hard. And you know, when I think back on it, oh my goodness, it feels like somebody else's life. We couldn't possibly have gotten through everything we got through. And you know what? I don't regret any of it because it got us to where we are today, which is embarrassingly sweet. You know, I have survivor guilt. Can I be honest about that? Because, you know, honestly, there are families that have you know, I don't quantify an outcome. It's you know, there are some people who win the autism lottery and I love that's more Moira G. Mateo's phrase. They won the autism lottery. I wouldn't say that that's us, but we got everything that I could have hoped for and a million other things more. And I know that that is not everybody's story. So I do have survivor guilt.

Mary: Because your son is now...tell us about your son.

Autism Progress, Autism Adult Skills

Shannon: He is 19 years old. He is in college. He just finished his freshman year where he made the dean's list with absolutely no support. They don't even know at his college that he ever had a diagnosis. He is in a very prestigious screenwriting program for screenwriting, for television and for film. He is a brilliant writer. This is a little boy who I went through years of IEPs because he would engage in challenging behavior whenever they would put a pencil in his hands because he could not write. And now he wants to make his living as a writer. He writes beautiful things. He's a wonderful person. He's thoughtful, considerate. He loves to work. He is currently right now at Camp Ed, which is the Ed Asner Family Center. This is his third summer being a camp counselor there. And he loves to work.

Mary: And that's for kids with autism, right?

Shannon: Well, it's for kids with all kinds of different abilities. And. Yeah, and he is just they love him there because they say he is one of the most patient people with that population. He started there when he was, I guess, 15. And I thought there's no way this is going to work. And there was one camper that they had who was nonverbal, I think, legally blind and wearing hearing aids and just really having some struggles to be able to communicate. And my son was the person who found a way to communicate with him. And whenever they would say Who or which camper are we putting with which person he would request to be with him? He said, Oh, he's the coolest guy. And I just like made my heart shatter into 7 million pieces because he's grown up to be this person who understands diversity and understands how okay it is to be different in a way that is poetic and beautiful. And he writes and says things that just blow my mind. And I'm so grateful. And he's funny and caring. And he's a teenager. Let me not make it sound like he's absolutely perfect. He's a teenager and he's in that phase right now where I am a complete and total idiot and know nothing and nothing I say like he's like the mom. It's not that, that is so 1994 what you just said. And I'm like, Oh, and I remember to be grateful for that because I recall the day when my friend, who had three neurotypical boys called me up and was upset because one of her kids had been mad at her and said, I hate you and slammed his door and went into his room and closed the door and I said, Oh, I'm really sorry. She was crying. And she said, Oh, you know, you wait until Jem says that to you. And I said, okay. And there was a pause, right? And she said, What? And I said, If we ever get to the point where my son says, I hate you and walks into his room and slams the door, I will be having a Tea Party because it means that we are not where we are right now. Knowing that she wouldn't understand that. But I remember when he says something to me and I go, Thank you, thank you.

Mary: Yeah.

Shannon: This too shall pass. Be grateful for this moment. So he's pretty sweet. He also works. We have a new show that we do called, Stories from the Spectrum, which is only a podcast, it's only content provided by and for people who are in the Neurodiverse community. And he works as a line producer on that and has made some videos and edited some videos, and he's also very talented in that arena, too.

Mary: So if he knows he has autism and he discloses that.

Shannon: So he no longer refers to himself as having autism, although that was the way he would have wanted it for a long time. He says that it was like opening a can of worms here, but he refers to himself right now as being neurodiverse. Now there are people who say you can't be neurodiverse. You can be part of the Neurodiverse community, but you can be Neurodivergent. And my son will tell you that implies that there is one true way and you have veered from it. And he's like, I, you know, if that's how you want to identify yourself, but he likes to say, I'm neurodiverse, I'm part of the Neurodiverse community.

Mary: Yeah, that makes sense.

Shannon: Because he does look at things different than I do. His brain is vastly different than mine. He and I will both tell you this is better. It's just better. He can do things I can't do. Yeah, he can see things that I can't see. He can work a problem in a way that I can't. But yes, he identifies as being diverse. He does not take support and he will tell you that. He'll say to you, you know, like we can all use support, right? But he won't take anything. That's even though I try to talk to him because there are scholarships that he could get. And he says, But Mom, the truth is, there's probably somebody who needs it more than I do. I don't. Those are set aside for people who have that need, and I don't want to take anything away from them. But he's not ashamed or he doesn't shy away from the labels. He just, you know, he always says there are enough words to describe. It's a spectrum. There aren't enough words to describe it. And how lucky am I that I can have that level of a conversation with him?

Mary: Right. Well, it does sound like in a lot of ways you won the autism lottery, but it's been your whole life. I mean, from the time he was two and a half until and now it's still autism is still a huge part of your life and his life.

Driving and Autism

Shannon: And yes, he's I mean, we still have hurdles to climb. You know, because of when COVID happened, he still is not driving. That's the next bastion for us that I don't know if that will work out, but that's the next place to go. You know, the challenges aren't over. It's just that the challenges are vastly different now.

Mary: Yeah, we interviewed Kelly and Suzy Carpenter, the mom and daughter team and the daughter Kelly is driving. We talked about that. We can link them to the show notes. And just as an aside as a former rehab nurse, if you have a child like your son or anybody listening with a child that they're not sure how driving is going to go, a couple of tips potentially is a lot of rehab hospitals do have like driving simulation things and programs for people with like head injuries that they can, you know, assess where their needs are, problem solving or reactions and practice and simulations. So that's one thing to check your local rehab for driving programs.

Shannon: I'm going to look into that.

Mary: And then the other thing is, just even for typically developing kids, getting driver teachers that actually do this for a living. I thought as a behavior analyst, I was going to be the best teacher of driving for Spencer. And, you know, it did not go well. So we hired somebody and I know personally lots of kids who have autism and drive and yeah. And they, you know, would benefit from lessons. So just a little aside in case.

Shannon: Love it and you know, somebody else gave me some great advice that we haven't used. I don't know if you guys know Danny Bowman from. She's featured right now on Love on the Spectrum. She's the animation girl and Danny is a friend of ours.

Mary: I have heard of it and I want to keep watching it.

Shannon: Well, Danny's a good friend of ours. We've known her forever, and Danny just got her driver's license. And so I was talking with her and her aunt about that, and she sent me a bunch of videos that are free that are on YouTube. And she said, oh, this, you know, she took, you know, the driver's ed and her aunt and uncle were helping her. And she had all but she said, honestly, the videos were the best thing because they break it down kind of in, you know, like a task analysis, all the different things and show them over and over again in a video how to like parallel park and, you know, safety rules and stuff. And she said, Oh, I loved it. I just watch the videos over and over.

Mary: Kinda like video modeling.

Shannon: Yeah. So I'm sure..

Mary: Can you email that to us and we can include those in the show notes?

Shannon: Absolutely. I'll send that over. Oh, that's a great idea.

Mary: And also speaking of love on the spectrum, I interviewed Kerry Magro a couple of years ago, and he's a consultant to this season in the United States, Love on the spectrum and he talks about dating. I think we may have even talked about driving there, too. We can link that.

Shannon: And if people watch Stories from the Spectrum, the last two episodes, Kerry has done interview segments on them. Dr. Kerry Magro So you can see where he interviews two amazing women from the spectrum, because we don't get enough of that viewpoint ever.

Mary: Okay. All right. Super cool. We can link the podcast stories from the spectrum.

Shannon: Stories from the spectrum.

Autism Live

Mary: You also have a show called Autism Live that you've been doing for how long?

Shannon: Oh, we're in our 11th year. 11 years.

Mary: Every day. Almost like. Yeah, multiple times a week producing live videos. That's where I was just on. It runs as a podcast. It runs as a live Facebook video, YouTube video and you interview guests, you do. It's a full production with a production team, which is just amazing. So you share it with me before we hit record that you used to be employed and funded by Card, which stands for the Center for...

Shannon: Autism and Related Disorders. Yes.

Mary: And for about a year you have gone out on your own...

Shannon: We've gone out on our own. Yeah. With their blessing, by the way. In fact, they've been amazing to us and for us always. I have so much love for them. But now I went out on my own and we started something called the Autism Network. And Autism Live was a part of that. But Stories from the Spectrum as a part of that, Ask Doctor Doreen the program we would do with Dr. Granpeesheh is a part of that and we're adding in shows all the time. I don't know if I'm allowed to say it, but I'm going to say it here. We're restarting our Autismo y familia program. That will be all in Spanish, so we're just always looking for that way. I mean, I know it's something that you're doing, too. It's like when people when it's 2:00 in the morning and you have no place else to be. And it's a moment where you could get some information or at least some help and hope that there's some place to go.

Mary: Yeah. Wow, that's amazing. So we can link that all in the show notes. And I really want to talk before we wrap up here. We have a couple more minutes and I mostly wanted to have you on the show to talk about your book. So can you tell our listeners, hold it up, tell us the name of the book and all about the book.

Autism Parent to Parent: Sanity Saving Advice for Every Parent with a Child on the Autism Spectrum

Shannon: So here's the book. It's just out. It's called Autism Parent to Parent. And the subtitle is Sanity Saving Advice for Every Parent with a Child on the Autism Spectrum. And I'm going to hold up Mary's book at the same time, because I think that these are great companion books. I think if you have both of these books, you really would have a leg up. What I did in mine is I said, you know, I've been on this journey for a while and hosting all these shows and talking to all these experts. And then what we've gone through and the parents that I've talked to. Two. There are a couple of things I've learned and you know, now I'm sure it's like this for you to marry, that people will call me up and they'll go, Oh, my friend's child just got diagnosed. Can you talk to them? And it becomes this, you know, phone call where I wish that I had all this stuff to be able to give them. And I made a promise to myself that I was going to write it all down so that even when I'm not here, it would be there would be a record of it somewhere and that it could help somebody. And I think where this book is a little bit different is that like Mary's book is amazing because it's really the steps of how to do this, this and the other, which is just amazing. I think, you know, where my book is a little bit different than I think a good companion piece to it is that I tend to talk about, you know, okay, so this is going to happen. Here are some ways that you might feel about it and here's what to do when you're feeling that way. I want to normalize it for parents that you're entitled to have all the feelings that you have. It does not make you a bad parent. You're a great parent, and here's how you want to talk to yourself so that you get back to doing the good things. And I demystify some of the things because there's a lot of bad information out there. People will say things to you, and I give you tips and tricks for how to weed through whether it's important to you, whether it's not important to you, and how to deal with the feelings. Every chapter ends with a little self. Talk about, you know, say this or something like this to yourself when you're feeling the feelings around it. Because I didn't have that. And for me the feelings were as much a part of the experience as everything else. The feelings were huge. Yeah. And I, you know, for me, I just, I, I think if what all of us wish for in the moment that somebody is about to get the diagnosis or getting the diagnosis is that they had a best friend who had already been through it that you could call up and the friend would say, You're okay, your kid's going to be okay. There's some stuff you're going to do differently. People are going to look at you funny. You're going to survive that. And here's how. And you know and here are some lines to go stand in line in and in that way, you know, it overlaps a little bit with your book. And I'm going to say this. I think that your book is much better about saying here's what to do and then do this next. My book is much more about and when you get in that line and you feel like this and your mother in law says to you this, here's how you're going to live through that and you are going to live through it. And it is going to happen and somebody is going to say something stupid that's not helpful to you. And you know you can't let it take you off course. Yeah, but allow yourself to acknowledge how you feel because there's a whole lot of people telling autism parents, well just get over it. I don't know how you do that.

Mary: Right or it doesn't have to be the center of your life. It's like, well, how can it not be when you're spending hours and hours and hours trying to coordinate, you know.

Shannon: Or stop being angry? You're angry all the time.

Mary: Or don't be guilty. Yeah. No, it's like, okay, but you know, and I think and I haven't read your book yet, but I am definitely going to read it now. But I don't think I do enough with all the feelings. I've always been like, Come on. Because once you start to see progress with, you know, materials and stuff like that, you will naturally feel better and you'll have more hope and your child will communicate better. And, you know, so I'm just like, come on, you know? I mean, of course.

Shannon: I think it is valid and important Mary.

Mary: And I like the fact that you were saying that they really go hand in hand nicely. I think it sounds like you do a much better job at the feelings, the emotions, the things that are going to come up. And they're not just going to come up during that early diagnosis period. They're going to come up all the time.

Shannon: Oh, yeah, oh, yeah. And I, you know, there what I love is what people have said to me, who have read it. They're like, Oh, my gosh. And then, you know, I'll be reading this very serious thing and then you make me laugh out loud because I can't show up and bring at least some of the funny. And my way of looking at the world is just funny anyway.

Mary: Well, you were a comedian.

Shannon: I was a standup comedian. I was a standup comedian for a while. I just pretend that I am now in the confines of my personal shower.

Mary: I would love a show by you because I think you are very funny.

Shannon: Can I tell you, we haven't even talked about this before the pandemic, I started doing a one woman comedy show called The Autism Monologues. Okay? It's a series of like, I do the IEP, and I play all of the characters in the show and. And we had dates. We were set to go on tour and then a pandemic happened. So at some point I'm going to get back to The Autism Monologues. We talked about filming it, you know, professionally filming it. But because, you know, I said to somebody, my head is like a clown car. And so when autism came along, I didn't stop having a clown car in my head. I just looked at the things like diagnosis and how, you know, there's a whole segment of it that's a game show and there is a category that's a river in Egypt because it's all the different ways that I was in denial.

Mary: I mean, if you, when you go on tour, please let me know.

Shannon: I will let you know.

Mary: I would love to come. And it's not the kind of thing you can just do a YouTube clip because it's all your material and it's, you know, is more of a live thing. But it's got to be so tough as a comedian to have all these great ideas. And then.

Shannon: Well, there is one clip that is online. I don't know. I'll find it and I'll see, it's called alphabet land. I don't know if that's what we named it, but it's about all of the acronyms. Yeah, it drive you full on crazy. And it's a song, it's like a music video, but it's a laugh if you get it, you know, it's hysterical. One of my friends who came to see the show, when we got to that portion of the show, he said, I didn't understand a single word that you said because it was just all these acronyms. And he said, But the fact that people were laughing so hard that they were close to throwing up, he said, that must be a thing because, you know, he's like you got to explain to me what that thing is.

Mary: Like every day, even though Lucas is going to be 26 in a few days from the time of this recording, and it's like I feel like every day I'm just shaking my head like, you can't even make this stuff up.

Shannon: No Right?

Mary: Like, it's just unbelievable. And, you know, Lucas needs lifelong care. 24/7 care, you know, barely communicates, you know, and he's still as independent as possible, as safe as possible, as happy as possible. And your son is, you know, not even identifying as having autism at this point. And, you know, but I think it shows us that shows our listeners that, you know what? It doesn't matter where you end up.

Shannon: Yeah, exactly.

Mary: It doesn't matter where you start or where you end up. You can still have a happy, fulfilling life and so can your kid.

Shannon: And I think that's an important story that we need to be telling all the way down the road. What I hear all the time is parents who their kid is, you know, 25, 35, whatever. And they finally have the epiphany. This is my kid and I love my kid and I'm always going to love my kid. And I do have a relationship with my kid. And we do have a way that we communicate with each other. And I do know my child, even if my child cannot utter a single sound, even if they are not proficient at pointing at a thing and know how to communicate with you that way. I still have all of that with my child and that in that moment they go, Oh, I've wasted all of these years worrying about, you know. And I feel like if we can tell these stories that maybe we can get parents on that ship earlier so that it doesn't have to be an epiphany when they're 25. That I feel very confident whenever a parent comes to me that I can say to them, you're going to be okay and your kid is going to be okay. I don't know what your path is going to be and I don't know where you're going to end up. But let's start with you're going to be okay, because I don't feel like there's enough people telling that story. And I think when people see that both of us are okay, we're okay and our kids are okay and they're leading happy, productive lives. Maybe that will resonate.

Mary: Right? Right. That's why, you know, a lot of people in the early diagnosis phase get into, well, it's a race we have to do. And kids of all kids, you know, make progress over different times of their lives. And yeah, your child only has one life and the earlier, the better. It's never too early, it's never too late. But you only have one life too, you as the parent. And so you can't immerse yourself. You can't throw yourself over the ship. You have to also have your own life and your own interest, which actually is a perfect tie into our very last question. So part of my podcast goals are not to just help the kids, but help the parents and professionals listening to lead better lives to be less stressed and be happier. So what are some self-care tips or stress reduction strategies that you use everyday that might help somebody listening?

Shannon: And I'm going to say that, you know, this is still what's hard for me. I'm still working on this as well because this is hard stuff. Right. But I try to focus on finding time every day to breathe. And I did that the whole time that my son was in treatment, that one of the things that I did was whenever we would get into the car, getting into the car was a really hard period of time. And until I got him put into his harness, because there was a period of time when he would just beat me in the head like a bongo when we were doing that right. And I knew somebody had told me, don't drive away in that moment, get in the car. He's safely in his five point harness. Get in the car. Fasten your seatbelt and then take three deep breaths before you drive out of the parking lot, whatever, every single time. And I now, you know, encourage people to take more than three breaths. But three breaths is a great place to start. You can turn any moment around. And that was the only moment I had where I knew he was safe and I could take a moment. And, you know, so if that's it, you take that moment right there, then if you can expand that, they told me that. Like I finally got to the point where I could meditate for 20 minutes. As you know me, that's asking a lot. And now they're telling me that there's even a bigger benefit. If you can go an hour, I don't know who's got an hour, but if you can get there. But three breaths, three breaths, we can all take three breaths. And if it means going and sitting in the car and turning the car and the air conditioning on and putting the kids in the car and breathing, like if you got to do that, do that. But I think that that's a big place to start. Things I wished I'd done. I wished I would prioritize my own medical health care. I didn't, I paid for that. My son paid for that, which I didn't. I'm lucky that I'm still here to tell the tale, you know? So please, parents, prioritize your medical health. And I while he needed much more care. The one thing that I because you got to have one thing that is just yours and I chose it to be scrapbooking then. And so I sort of scrapbooked everything that we were going through and I would sort of journal with it, which led to writing, which really became a great outlet for me. Now, at this crazy age, it's pottery. I've discovered pottery, and that is my place, that is Zen, that I go and throw a pot and it doesn't matter if it turns out it's mine. If I threw this mug, how, how? Like, it's a thing and I drink water out of it. It makes me happy. It's something different for everybody. But you've got to maintain a sense of yourself. You know, the whole reason why I did the one woman show at a certain point was formulating in my head, but I was always funny. I won awards as a standup comedian, and there was a day when I was trying to be funny and saying something, and my son turned to me and said, Oh, Mom, stop. And I was like, Why? Because you try to be funny and you're not. And I said, Pal, I am the funniest person. You know, I'm the only person, you know, that has a plaque that says they're the funniest person in the state. And he was like, Why are you lying about it? And it became a thing where I was going to prove to my son that I am a funny person. And after, like, I don't know, like a fifth show, I overheard him talking to somebody outside the theater and he was like, Isn't my mom funny? And I went, Yes, because I think that it helps for our kids to see that we have leisure activities. We're modeling that behavior, that we're taking care of our anxiety, that we're self-regulating, that we have things that we're passionate about. We need to set that example, too. It's hard when you're in the thick of it, man. I didn't do a good job of it when I was in the thick of it. But you can do the three breaths.

Mary: Yeah, I love that. I love that. So Shannon Penrod is your name. Your book is Parent to Parent with a longer subtitle. You can get it on Amazon. We'll link it in the show notes. All the show notes for everything we've talked about will be out MaryBarbera.com/186. Love talking to you. Can't wait to see your one woman show. We have to make that happen. And I look forward to connecting with you a lot more in the future now that we've reconnected.

Shannon: Amen. Yay, thank you.

Mary: If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/Workshop where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/Workshop for all the details. I hope to see you there.