#050: Autism Support Groups & Encouragement: Interview with Julie Hornok

autism support groups

Whether you are an autism professional or a parent to a child with autism, one thing is for certain: some days, life is hard. It’s very easy to build walls and forget to let them down, and it’s very easy to become so obsessed with “fixing” your child that you miss the small victories, and you ignore your own mental state. Julie Hornok, autism mother and award-winning author, is on a mission to uplift the weary mothers and caretakers around her and create autism support groups for autism moms.

Julie has known the feeling of failure, but she also knows that to remain hopeful and consistent with your child brings on amazing rewards; her own daughter is fully conversational, something that Julie was scared would never happen.

Julie is the author of the award-winning book, United in Autism. In her book she interviews multiple parents about their real life autism experiences, and how they overcame them, and became stronger for it. She is also the founder of the nonprofit organization United in Autism, where she connects mothers and encourages them to relax, make life-long friends, and inspires them to keep moving forward. 

If you ever feel like you’re losing against autism, or you’re in need of some encouragement, then this is the interview for you. Not only is Julie inspiring, she also knows a thing or two about self-care, and how to stay on top of your own well-being.  Because at the end of the day, for a child to reach their fullest potential, you must be at your best as well.

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Transcript

Mary Barbera: You’re listening to the Turn Autism Around podcast, episode number 50. And today I am really excited to have an autism mom and author on, Julie Hornok, and I’m going to get to her in just a second and I’ll introduce you and tell you the wonderful things Julie is doing. But before that I want to give a listener shout out to a listener who gave me a five star rating and review for this podcast; it is by Tanner’s mom. And she said, “My son has recently been diagnosed with autism and your podcasts, YouTube videos, eBooks, and courses are absolutely incredible. I have learned so much and still have so much to learn. Thank you for everything you’ve done for our community.” So thank you so much to Tanner’s mom for giving a five star rating and review.

Mary Barbera: Please share this podcast with everyone you know; all the moms out there with diagnoses of autism for their kids, whether it’s newly diagnosed or if they have teens with autism. And then also professionals. But I estimate about half of you are professionals and half are parents. And I try to keep it very balanced. So I’m really excited to interview Julie today. So let’s get to that special interview.

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 Barbera: So today I have a very special guest: autism mom and author, Julie Hornok. She is an award winning author of the book United in Autism, which I bought and I have started to read. It’s just great. She’s also an inspirational speaker. She started the nonprofit United in Autism to bring hope to autism moms through emotional support events, and her book with the forward by Temple Grandin is available at unitedinautism.com, or you can also get it through Amazon and she also has a Facebook community, which she’ll talk about where she gives daily encouragement and interviews from inspiring autism parents and experts from around the world. So welcome Julie. So happy to have you here.

Julie Hornok: Thank you. Thrilled to be here.

Mary Barbera: Yeah, it’s really nice to meet you. I just recently became aware of your work. So we usually start with describing your fall into the autism world. So if you want to help us see when that was and how that all came to be…

Julie Hornok: So my daughter is now 16, so this was years ago, but she was having some issues around nine months. She was where she just stopped being engaged with our family. So she used to kind of crawl around and chase her brother and you know, they would laugh and laugh. So she was engaged kind of in our world. And I remember just little things like, you know, you always look back and you’re trying to figure out what am I missing? And she would drop the keys and then look at us to pick it up.

Julie Hornok: So then somewhere around that time she just kind of started to go inside herself and it was over… It was slow over a course of time, but she, I noticed she started lining up her food and she had some good babbling that was going towards language and that kind of backed off and turned into jibberish. And so then we started, I thought, okay, well because of the language not coming, let’s, we started ECI early childhood and we just started speech, and then we noticed she had all these sensory issues starting to happen.

Julie Hornok: So she was flapping her arms all day long, walking on her tip toes, just in general seem to be sensory seeking, like slamming her body into things constantly in. So we started to work on occupational therapy too, but autism still wasn’t on my radar. I didn’t know anything about it really. I don’t have any experience before this in the special needs world. And so I started along with that, ECI and it, we didn’t have tons of progress really, but we had some just little bits, you know. And then my ECI coordinator said, I want you to come and socialize her with a group of kids. But she actually had another thing in mind. And so we got there and I of course wanted my daughter to be more social. She was always running away from us and never really with us. And so she, I dropped her off, and then she had me go into a group with the moms just to kind of talk.

Julie Hornok: Well it was like in a circle, like classic circle where you sit there and you know, like support group. And as we went around and introduced ourselves, every single one of the parents had a child with autism. And I just started bawling. And it was like, at that point ECI wasn’t allowed to mention the word unless we had mentioned it. And so I was like, oh my gosh, see she thinks my kid has autism. Like I wasn’t ready for that. I was still thinking communication problems, you know.

Mary Barbera: And how old was your daughter at that point?

Julie Hornok: So she was just almost two years old and we had started ECI at 18 months. And so anyway, I went home, I was really angry with her because she had put me in this situation, but at the same time I get it, you know, she really was helping me and I appreciate it now. I just didn’t appreciate it in the moment. And so the next day I’m like, I will see you tomorrow and we’ll talk, you know? And so that was when she was like, yes, I think you need to look into it. I think you need to find someone.

Julie Hornok: And we went and tried to do a developmental pediatrician, but you know, there’s always those long wait lists. And so I had a situation of where the only person on my insurance that I could get into was six month wait list. And I was of course like, oh my gosh, my kid has a problem. I felt probably like every parent feels like they have a problem, I want to get on it. Like I’m action-oriented, I’m a fixer, you know? And so I had this beautiful friend who had heard about it and she, her son was already diagnosed, and she had a developmental pediatrician appointment for the next week and she called and begged the developmental pediatrician to give the appointment to me.

Mary Barbera: Wow. So it was a follow-up appointment.

Julie Hornok: It was like, yes. Which I mean, you know, those are very valuable and her kindness and gift to me, you know, that was one of the first times when I’m like, I was so moved because that was giving up a lot and it really did change the course of us getting right in. And you know, we went into that developmental pediatrician, walked out with a diagnosis and basically get her in ABA right now. You know, this is not like a maybe situation. She was diagnosed with moderate autism.

Julie Hornok: She, you know, they said basically she doesn’t know the difference between you and the chair. She treats you just like an object. And at that point she had like kind of gone downhill anyways, she had some self-interest behavior. She was real frustrated all the time. You know, it had gotten worse between the 18 months in the two years. So that was kind of the beginning.

Mary Barbera: That’s what happens is, is it does get worse because well-meaning people like occupational therapists and speech therapists and teachers and daycare providers are just trying what’s worked for the other kids. And you know, without language, without an understanding of how to help your child, it tends to look worse instead of better over time.

Julie Hornok: Well, and she didn’t know how to learn. Like she didn’t understand that if she gave something, she got something and that was what she learn from ABA. And that was what helped her be able to gain skills and then also to gain language. You know, the same speech things they were doing before, but when they added in the ABA mindset, it changed her ability to react to it.

Mary Barbera: Reinforcement, you know, there’s something in it for them and they don’t even know that. And it’s just the basics of pairing and reinforcement, which is so much in line with what I do and, you know, hopefully what, what people are experiencing if they do get ABA. But, you know, ABA varies from place to place. So you’re in Texas now, were you in Texas at that point?

Julie Hornok: Yeah. We actually, yeah, we moved around in Texas a little bit for her schooling because the district we’re in is great now, but at that time it was too new and they didn’t have an understanding of proper ABA, making it playful, that kind of thing. And it was all a little bit more rigid for my tastes. So we moved to kind of a more play-based environment for schooling when she turned three. And so, yeah, we’ve moved around in Texas a little bit.

Mary Barbera: Cool. Okay. So let’s talk a little bit about your book United in Autism, and its subtitle is finding strength inside the spectrum and the forward is by Temple Grandin who, I was just telling somebody about Dr. Temple Grandin who didn’t know anything about her and I said she’s pretty much the most famous person with autism in the world. So she was really… I had lunch with her. I actually wrote a blog way back like years ago on my lunch with her. And I was in a little film that they were going to do about her, which she has an HBO movie on her life, which is amazing. So yeah. And that movie is called Temple Grandin, I believe. And it’s an HBO movie. If you haven’t watched it, if you’re listening out there, I would Google, you know, HBO Temple Grandin and watch that movie. It is really powerful.

Julie Hornok: Yeah. Well, and I think what she taught the world is there is so much value in listening to a person who has autism itself, how much we can learn from them. And I love that because what we want for our kids as they grow up is we want them to be valued in the world. And she has shown us the value of listening and the skills that she’s able to share and how it feels has really changed my perspective, you know, for my daughter and millions of parents, how they look at their kids and how they understand our kids. So it’s pretty incredible.

Mary Barbera: Yeah. And in her foreword for your book, she talks about how parents really just need to take action. And start coordinating a program and start engaging with their kids. And, and which is, you know, what you believe obviously what I believe I’m my online courses really just give parents the tools to help them make progress every single day. So that it’s not like weeks or months where you’re relying on other people who really aren’t in the best position to help your child you are if you’re a parent. So I love the foreword and I started reading the book. So the book is vignettes of different parents. And so why did you decide to write this book? First of all?

Julie Hornok: Okay. So basically when my daughter started progressing and she did progress, like it was never like one little thing we did, it was just stacking up all the progress, and it was slow progress over the years. But at one point, you know, whenever your kid is a little bit more severe, you’ve spent a whole lot of time trying to keep them safe and just trying to keep them from hurting themselves. So when that place was over for us, she started to understand danger and we could take her out in the real world and our lives became a little bit more normal. I wanted to just do something for the moms that were still there, that were still in the trenches, that were feeling that every day because that was the hardest thing for me is just being on 24/7 having that fight or flight all the time. You’re exhausted emotionally, physically, financially, and you can’t function. You just need a little break.

Julie Hornok: And so in the Dallas area, and we started doing, through a national organization, we started doing an event for moms of kids with autism just to emotionally support them. And this became like, I thought, oh, it’s just going to be a little thing where we have like a break, you know? But after one, I realized it was bigger than that because the moms were meeting each other and they were becoming their lifelines. And they were becoming just their besties that could kind of take them through so they could emotionally function in this hard life together. You know, and you’ll have to have someone with you. So then every year we started doing these events and as you’re doing events, I always wanted to give away like the perfect book. Like something that would inspire them. That something that showed parents where their kids didn’t necessarily get better and their kids didn’t necessarily like have the most support or whatever, but they were still inspiring in the midst of it and helping others.

Julie Hornok: And so that was when I decided to do this book, because I was like, if I can’t find it, I’m going to write it. So I began just through connections, trying to find different, real inspiring parents all over the world. And as I interviewed them and I did a lot of the interviews, lots of them face to face, and then others like through Skype, you know, or sometimes it was through Facebook even, you know, like the little live thing or the messenger thing you can do. And we talked and I heard their stories and then I wrote it, you know, I’ve put it into story format and every story is so great just both for parents and for providers because at the beginning it shares something like kind of crazy that goes on in our lives. You know, it’s like the real stuff, the real autism.

Julie Hornok: So sometimes it’s hard stuff, sometimes it’s funny stuff. And so it kind of really, I think for parents they can relate to it. They don’t feel so alone. And then for the providers they can really see the real life behind closed doors view that we don’t show in school or therapy or whatever. And then it kind of shares a little bit about their journey and then how they’re helping the world now. And so my hope is that it would inspire parents when they’re in the middle and in the trenches to kind of keep going to know that they can do it because all these other parents have.

Mary Barbera: Yeah, that’s great. So you also have continued to do these live events for… Is it for moms only?

Julie Hornok: Yes. Moms only or female primary caretakers. So like you know, there’s some grandparents, grandmas that have their kids permanently, like grandkids and it’s for them, too.

Mary Barbera: Okay. So what would happen if somebody came to a live event? There’s a hundred women there? Is there a cap at one hundred?

Julie Hornok: Yes. We usually keep it around a hundred depending on the funding and the situation. And you know, it’s through my nonprofit now United in Autism and we have done, I will tell you, we have done everything I love.one of my favorite things is just really catering to the women where they’re at in their, what is wonderful to them, you know what I’m saying? So we go to different places all over the United States and I always combine with a local charity because I want… For one, I want them to continue it after I leave the next year. And then also just to find out, I want to really get into the culture and figure out, okay, what are they into that would relax them the most, that would have the most fun.

Julie Hornok: But a typical event is usually an evening. And, well it is what we have gotten every time, all that we always get feedback and is they just want to talk to other moms. Like they want to have the time and ability to go out without kids and connect because it reenergizes them. They meet people. So we try and do everything to make that environment so they can immediately drop their guard. And that is hard to do because we’ve had, you know, as autism moms, we all feel like we’ve been shunned in some way from friends or family or society. We’ve been hurt, you know, we have walls built pretty high and we don’t always show that vulnerable side of us. And so this is, it’s made to do that.

Julie Hornok: So it’ll be an evening of like icebreaker games, talking, just really getting into sharing each other’s stories and some talking about life outside of autism, you know, just connecting as women and we always have live music that kind of brings us back to a pre-autism time to kind of good, good memories. We have a whole lot like a bag of really fun stuff for them. It’s like we just want to give and love to them. And this is like the only goal of it. You know, there’s no sales, there’s nothing is going to be asked of these women. They are going to show up, they’re going to eat a fabulous meal that they didn’t cook and they are going to drink drinks that they can’t drink when their kids are around, you know, to relax and they’re going to talk to other women. And then I usually speak and I share, I have just a billion funny stories from my daughter, so I share some of those. And then just, we talk about different things, how to cope with this life, how to get through it, how to let go the normal life and be okay and joyful in the midst of our own journey.

Julie Hornok: And then we do a really beautiful thing at the end of every one of them, no matter what activities we do, we do a sisterhood circle at the end and it’s really beautiful to look around and see the faces of just 99 other warrior moms. And it’s, there’s something just so inspirational about it. And we look around, we find out who the youngest mom is with the newest diagnosis. We find out who the oldest mom is and it’s just, we know that, okay that woman’s made it. I can make it, you know, and it’s just really encouraging. And then we give gifts to everyone too cause it’s fun to have free stuff, you know? So.

Mary Barbera: And how are these events funded?

Julie Hornok: So funding is always a challenge and always welcomed on my website. We have the funding… It is, we are getting it from anywhere and everywhere we can. We love partnering with ABA companies, therapy companies because I like to partner with companies that believe in giving back to the community as well. I mean it’s just the heart of that is beautiful in recognizing that one of the biggest pieces, everybody’s trying to put the puzzle, the kid together. But one of the biggest emit most missed pieces is that the parents, specifically the primary cater caretaker, which is usually the mom. She has to have the emotionally healthy and strong to be able to continue. Or she’s going to burn out. So you hit like seven, eight, nine and that we’re starting to get burnt out. And if our emotional health is good and we have taken time for ourselves, then we’re going to be able to even continue in that therapy longer with our kids, side by side with the kids.

Julie Hornok: So we love partnering with therapy companies. We seek grants, we take donations from the general public, you know, and pretty much anywhere and everywhere we can get the funding, we do it. So it’s just, it’s all about 100% of it is going right back to the events. There is no, I mean we’re all volunteers on the board and all volunteer our time. Nobody, you know, nobody makes any money at all, goes to the women. And that’s one of my goals also is just I want to give back, you know, in that way.

Mary Barbera: That’s great. So you had told me that your daughter is actually fully conversational and doing really well and going to learn to drive soon. And does she know she has autism? She talks about that. And can you tell us what she’s like now?

Julie Hornok: Yeah. So she did start to like, she got language pretty, pretty soon, pretty quickly, you know, like within, you know, by the time she was three, she had some decent language. By the time she has had four, she had a lot of words. And then we worked on using it conversationally and that was an enormous piece because I felt like what was always missing is I just want that relationship back with her. And you know, it seemed like there was a disconnect. And so that relationship started happening and you know, we could have like a one second conversation and then it was two seconds. And so eventually she just became fully engaged again. And she very much, she’s almost 17, she very much still has autism, like you see it every day, but she’s functioning in this world with autism. So she goes to a learning differences school, but it’s very much a mainstream situation. And she is the captain of her cheer squad. She is on the volleyball team. She’s in all kinds of leadership positions at school. She’s on the honor roll, honor society. You know, she’s really doing fabulous in the midst of it and the strides she’s made are really beautiful and you know, our kids are capable of this… You know, they’re capable and it’s all about just taking those little steps of progress and never giving up and continuing.

Julie Hornok: Like one of the most important things I think is to be consistent across the board; consistent through school therapy and home. And where 100% of her time is a therapy environment, especially when she was younger, you know, and whether that, you know, it all has to be thought through and very much together.

Mary Barbera: Right. When people say to me, well, how much ABA does my child need? And it’s like, well, it really is great if everything that happens during all of their waking hours is thought out ABA-based, you know, so that the right behaviors are getting reinforced constantly and naturally so that it’s not therapy in the bathtub, but you’re still using the principles of behavior and reinforcement and all those kinds of things so that every activity, whether it’s bath time, going to the grocery store, going to the playground, is successful.

Julie Hornok: Right. Well, and honestly, I mean, it’s made me a better parent for my other kids. Like I have two boys also. And if I’m consistent with them, consistent parenting in general is a fabulous thing. So they know their boundaries, they know what they can and can’t do. They know what they’re going to be rewarded for. And you know, it’s helped, it’s helped across the board. So I feel like I think they’re turning out okay. You know?

Mary Barbera: Yeah. I wasn’t a behavior analyst until my kids were, you know, seven and eight. So, or around that age. So, yeah, if I had another baby, which is, you know, obviously out of the question at this point, but you know, I would be a much different parent just knowing what I know. But you know, whether you’re a behavior analyst or just have been raising a child with autism and you’re feeling like you’re applying all these techniques, not naturally, not, it’s not like you don’t have to think about it. Everything is done so that the right behaviors get reinforced. And I did a blog and my thought is that I want each child to, so I have a typically developing son too who’s in college. So I want both my sons and all of my clients and all the people I meet for their kids to be as safe as possible, which you brought up, as independent as possible, and as happy as possible. And I want each child to reach their fullest potential. So whether your child is still not talking or having major problem behaviors or whether they’re like your daughter who is doing, you know really well, you still, you always want them to do a little bit better and be a little safer, a little more independent, and hopefully continue being happy. And that’s really I think important. I feel like the more we talk the on the same page we are.

Julie Hornok: Well I mean yeah, I think the safety of course it’s always going to be number one. And I think one of the biggest mistakes I made as a young mom was that I wanted to fix my daughter. I literally had in mind in two years I wanted to be back to my normal life. And that thing is there was nothing to fix. There was only what you said to better and to help her reach her full potential. She is gonna have autism and be beautifully engaged in the world and able and, but we’re never gonna change that autism piece. You know what I’m saying? Like it’s there and it’s not going anywhere. And not only that, by me having the I need to fix you, that’s not good for her self-esteem or for her ability at growing up to know that I’m trying to fix her, you know, I’m loving her as she is while applying different techniques and skills to make her the most capable and the safest and exactly what you said and the happiest. And all of the things I have done have been working towards her happiness and her future.

Julie Hornok: You know, you actually, I wanted to go back to something you mentioned: does she know she has autism? And I, this is something actually I’m working on a book right now where she’s doing this with me. And this was probably the one that, one of the hardest things for us. So when she became about 10 or 11, she would say things to me and this is, parents always want to ask, you know, when’s the right time to tell them? And I’m like, well, when they’re asking, you know, like don’t tell them anything they don’t need to know in that area, you know, cause you don’t want to make them feel bad about themselves. So she started saying, I’m different, my brain is different. I’m not like the other kids in my class. That kind of language.

Julie Hornok: And so at that point then I decided to go ahead and tell her, okay, you have autism. But we didn’t just say you have autism. You know, I made her a book and it said, okay, this is what autism is and this is why you’ve had all this therapy. But you know, because of autism, there’s going to be a few things that are harder. And we listed them out, and then a few things that are easier. And we listed those out and then we went through all the things that are the same. You can still get married, you can still have a job, you can still go to college, you can still do all of these things. And then I had a whole section of the book that said family members and friends, shared stories of how she’s enhanced their life. Because she has autism she’s changed them. And it’s just a really beautiful and hard thing.

Julie Hornok: But she went through her own grieving period. It was a whole year where she went through the exact grieving period herself. And I think that’s something we don’t think of as parents and maybe as providers and that I’m sad, my life doesn’t look the same, you know, but she has to come into contact and realize who she is. And she kept saying, I don’t want to have a disability. I don’t want to have autism, you know? And she had to deal with it herself. And I think sometimes we don’t think about that perspective of it. It’s really hard on them to not be like everyone else.

Mary Barbera: Yeah. I think that’s excellent. And I think there’s a lot of people out there that really are struggling with kids that are higher language, higher functioning that, you know, when do you tell them? How do you discuss it when, you know, so I think that’s excellent. I think that book will be just amazing. So, yeah. So maybe we can have you back on when that book comes out because I think it is a big need. I’m not the expert on that at all because Lucas remains impaired with moderate to severe autism and he doesn’t understand that kind of, you know, he doesn’t understand autism. He doesn’t understand, you know, those sorts of things. So with my family it is different. But yeah, I was really very focused when Lucas was little. And I talk about this in some of the previous podcasts, I was really focused on recovery from autism and making it all better.

Mary Barbera: And I pictured like a recovery party in a very black and white, you know, he’s going to get better. And then I’m going to go back to a normal life. And what I’ve learned over the past 20 years in the autism world is there is no such thing as Joe Normal. Even with my typically developing son, and my friends kids, and my typical and non-typical, you know, there is no such thing as a completely normal life or a completely normal kid or a completely normal adult is like we all have our strengths and needs, we all have our issues, whether that be physical or mental health and you know, anything can change at any minute. You could fall down the steps and be completely different person. So everything is relative. And that’s why I think my overall philosophy, which sounds very in line with yours is like we just want everybody to reach their fullest potential.

Julie Hornok: Yeah, well and recognize, just recognizing that everything you go through that’s difficult has the ability to make you a stronger, better, more capable person. And so that’s kind of the approach I take with her, too. Like she had a big thing going on this morning with cheer and it was a big problem and she had to lead it. I’m like, Lizzie, this is an opportunity to become a better leader. And so you have to, if you think of it and realize that everything has a purpose, then you’re much better off because you’re overcoming as you go and you don’t sit and wallow in it, you know? And it’s not that you don’t feel it because things are hard and I don’t ever want to gloss over that. I don’t. But the fact that you sit and you feel it, and it’s the same for the parents and for the kids if we take that approach, you know?

Mary Barbera: Yeah. That’s awesome. So some of my listeners, probably half of my listeners are professionals out there. So I think you’ve given them a lot of great information about the diagnosis and you know, your stance as a parent. But do you have any other additional advice for parent and professional collaboration? Some good examples, some, you know, maybe areas where people are struggling, where you’ve seen them in their live events or through your interviews?

Julie Hornok: What, I mean, what I’ve seen is mostly with the parents and this is something that is going to be impossible to explain. So I’m going to ask every professional just to, when you approach a mom and she’s crazy, because I’m telling you, we’re crazy. We know that, I know it, you know, but the emotional load… Until you’ve lived and walked through it, it is so impossible to explain the emotional load on parents. And it is so incredibly overwhelming that it makes us a little nuts at times. And you know, there is not one professional I’ve worked with and that I don’t value that I haven’t gone crazy on, you know, because it’s like I know they’re the one that can help me.

Julie Hornok: So just taking in your interactions with your parents, just really taking a step back and using that empathy in that, okay. It is a lot harder than you can even dream unless you’ve been a mom or a dad and then you know it. But if not, it’s going to be so much more impossible. And so we’re overloaded. Our brains just can’t always handle more because the emotional stress is so incredible. So the parents, the people that I see that work best with the parents, their kids are also doing the best, you know what I’m saying? Because they’re reaching them at a level of, I don’t understand this completely, but I want to support you. You know, and I want to do the best for your kid. And just sometimes you just kind of have to swallow the, if their anger is coming towards you, even though it’s for no reason to be towards you, you’re the one trying to help them, you know? So just really understanding where they’re coming from in that headspace because it’s, it’s a really complicated, really overwhelming place. And plus we don’t sleep. And so you have to remember that. That makes you crazy too.

Mary Barbera: Definitely. Definitely. Okay. So part of my goals for my podcast is not only to help the kids, but for parents and professionals to be less stressed and lead happier lives. And it seems like our whole conversation has been, that’s your mission. You really want parents and professionals to be less stressed and lead happier lives. Do you have any self-care tips or stress-relieving things or things that you’ve seen, you know, portrayed in other people that we can give that advice?

Julie Hornok: Yeah, I mean I think anything that you do self-care-wise has to be within the normal flow of your day, or you’re not going to do it. So every person take a look at your day, whether you can carve time out or whether you can just add something in. So like what I tell parents a lot, you know the moms that are home is when your child takes that five minute nap or 10 minute nap or whatever is, don’t clean the house. Like do not do anything productive. Take time, watch a mindless TV show, flip through magazine, flip through Facebook, you know, take a bath, do something like that that’s in your day that you can fit in regularly. But I would say after interviewing all the families around the world and lots of them are in extremely dire situations… If you want to be happier in life, you have to be giving back. So doing some act of service, and it doesn’t have to be special needs or autism related, but doing some act of kindness towards other people enhances your life and is actually self-care. And we don’t always think of it because you think of it as giving something more, but it’s actually self-care when you’re showing kindness and love to others because it makes you happier and it increases all the, you know, all the good chemicals that you want increased in your body.

Mary Barbera: Yeah. That’s excellent advice and advice that is kind of counter-intuitive, but yeah, that’s really good advice. I think early on, you know, I’d go to autism conferences to learn more, to sleep in my own bed without interruption and really to meet other, other autism moms and you know, some of which are still really close friends of mine. So I love your whole mission of, you know, really get giving support to moms. Especially because like you said, they are the, usually the primary caregiver. And I’ve done a video blog where, you know, a legit study has measured saliva and they’ve found that autism moms have the stress levels, the fight or flight reaction, typical as much as combat soldiers.

Mary Barbera: And even though your daughter is a much higher level than Lucas, I do think that, you know, he doesn’t have the safety awareness that your daughter has, but he has, he has a safety awareness to a point. And we also have a lot of services for him to keep him safe. But if I didn’t have that,, so it’s like in your situation you were able to teach your daughter safety awareness to bring down, to get rid of your fight or flight. For me it was more of the, you know, the door chimes or the locks or the… and the people to watch him so that I didn’t have to be on like 24/7. So I think those are just two examples that you don’t have to just go like, well, like my child’s not high functioning enough so I’m going to have to live like this for the rest of my life, because I don’t feel like I’m stressed out and fight or flight, you know, anymore. And I probably didn’t after, I don’t know, the age of 10 I probably calmed down quite a bit.

Julie Hornok: I think we recognize as parents, we have to recognize regardless of what functioning or which that’s a whole other thing but, but functioning, our kids are, we have to recognize that okay, autism is forever, this is lifelong. I need to slow down a little bit. I need to actually love my kid in the moment and appreciate them for how hard they are trying and what they are doing. And going through it with that mindset kind of takes a little bit of our fight and flight away too, like, because we were thinking like, I just remember being so wrapped up every night I was on the internet researching and just trying to find the next thing, the next thing, the next thing to make more impact in a shorter amount of time. And that alone is exhausting and adds to the stress. And so just really taking it like a step back and doing what you can and slowly realizing, you know, they only are going to stop learning when we stopped teaching. So you can be well into your twenties teaching these kids skills they should have had 10 years ago and they’re still gonna learn them.

Mary Barbera: Yeah. And I often say it’s not a sprint, it’s a marathon, but it’s also a marathon on a roller coaster. And so you really have to work on your self-care and your stress reduction. So I think it’s been an excellent interview. I’ve learned a lot so far. So people can find you… The best way for people to find you is-?

Julie Hornok: Yeah. The best way is just to hop on my Facebook groups, so at United in Autism. And we have a good little group where it’s full of encouragement and it’s full of just different interviews with parents from around the world. Lots of the interviews from the parents sit in the book. We have almost all of them have been interviewed, too. And that’s really fun. And then it’s just a place of if you need encouragement, go there because that’s what my goal is, is to encourage both parents and professionals. And because I have an enormous amount of gratitude for the people working with our kids, I mean they have to have their heart in it or you know, or they wouldn’t be there because it’s hard to be with our kids every single day. So also UnitedInAutism.com, so.

Mary Barbera: United in Autism, I would recommend the book and the Facebook group as well as Julie’s website. So thanks so much for your time today. I really enjoyed it and I wish you the best as you continue on your journey to change people’s lives. So thank you so much.

Julie Hornok: Thank you. I’ve enjoyed it.

Thanks for listening to the Turn Autism Around podcast with Dr. Mary Barbera. For more information, visit Marybarbera.com.

 

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