Kate Swenson joined me for the second time on the Turn Autism Around podcast. You can find her first interview in episode 70. Kate is a mother of 4, and her first son, Cooper was diagnosed with autism a few months before his 4th birthday. She has created an amazing platform through her blog Finding Cooper’s Voice and her paid Facebook group of which I am a member, Coop’s Troops.
Finding Cooper’s Voice
Kate’s blog, Finding Cooper’s Voice, hosts 760,000+ followers which is no small feat. She shares about the hardships of a large social following and the “consequences” of going viral. Kate is a big advocate for parent journeys in the midst of navigating diagnosis, resources, and treatment for children with autism. She even talks about how much of a shock it came to really understand how many people and what kinds of people see her content. In an effort to create a safe space for herself and other parents, Coop’s Troops was born. Coop’s Troops is an intimate paid group on Facebook, where moms, dads, professionals, caretakers, etc. can vent, ask questions, and share resources. I am a member of this group and it’s such an amazing place where I have connected with people and even guests for the podcasts.
Out today, April 5th, 2022, is Kate Swenson’s book Forever Boy. This memoir style novel follows the real story of Kate, her family, and navigating diagnosis and life as a parent of a child with autism. In today’s episode, she reads a beautiful excerpt about her first experience with Cooper’s diagnosis and where professionals said he fell on the spectrum. You can find Forever Boy for purchase on Amazon. If you don’t already own my book, Turn Autism Around, it is a great chance to support us both and boost the algorithm by purchasing both books and leaving reviews.
I am so excited to share Kate’s book today. I was a member of her book launch team and have loved reading the book. Kate has a lot to share and she does so through her beautiful writing. If you are the parent of a child with autism, a teacher, a professional, or just someone whose life took an unplanned turn, I am confident Forever Boy will resonate with you. You can find out more about her by checking out her blog Finding Cooper’s Voice.
Kate Swenson on Turn Around Autism
Kate Swenson is the creator of the blog and Facebook page Finding Cooper’s Voice. She speaks regularly about autism, parenting, and motherhood, and is a contributor to TODAY Parents, The TODAY Show, and the Love What Matters blog. Her mission is to create a safe space for families of children and teens with special needs to come together and laugh, cry, and support each other. She lives in Minnesota with her husband and 4 children.
- Who is Kate Swenson?
- A special excerpt of Forever Boy, read by Kate Swenson.
- The surprises behind publishing for a first time author.
- You can’t predict autism, coming to terms with not knowing the future.
- How social media presence and a viral following can bring negativity and hate.
- The importance of the parent journey for parents of children with autism.
- Finding care and help as a parent of a child with autism.
- Sign-up For Mary Barbera’s Workshop
- Episode 70: Kate Swenson: Finding Cooper’s Voice
- Episode 90: Apraxia and Autism: What is Apraxia with Tamara Kasper
- Autism and IQ Scores | Supporting Children with Intellectual Disabilities
- Autism and Anxiety
- Can You Predict How a 2-year-old with Autism Will Do at Age 8 or 18?
- Finding Cooper’s Voice | Facebook
- Forever Boy: A Mother’s Memoir of Autism and Finding Joy Hardcover
Kate Swenson – Turn Autism Around Podcast Transcript
Transcript for Podcast Episode: 170
Forever Boy, A New Autism Memoir with Kate Swenson
Hosted by: Dr. Mary Barbera
Guest: Kate Swenson
Mary: You're listening to the Turn Autism Around podcast episode number one hundred and seventy. I am so excited today to welcome back to the show Kate Swenson from Finding Cooper's Voice, who wrote a brand new book that's out today, April 5th, 2022. It's called Forever Boy, and we are talking all about the book. She's reading an excerpt. And we're talking about all the things that have happened in the past two years. It's a great interview. Hope you love it as much as I do. Let's get to it.
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: OK. Kate, I am so excited to have you on the show for an update for all of our listeners, so welcome. Thank you so much for your time. I know you're crazy busy at the moment.
Kate: And you just said it's been two years since we last talked. I can't believe that that's crazy. So much has happened.
Mary: Yes, yes. So I always start out with the same question. Now you are on Podcast 70, which we're going to link in the show, notes MaryBarbera.com/70. And we always start out with, describe your fall into the autism world so you can get the real detailed version in 70. But can you just for people who haven't ever heard of you? Kate Swenson, I don't know where they've been, but can you just tell us how you fell into the autism world very briefly.
Kate Swenson on the Turn Autism Around Podcast
Kate: Yeah, so I knew nothing about autism. Honestly, I don't even know if I'd ever heard the word got pregnant with my first son, had a very typical pregnancy. He was born on December 6th, a very cold day in Minnesota. And right away, I could tell that something was just a little bit different. I could tell that he was different from the other newborns next to him. Honestly, my friend's kids, I had been around a lot of babies and just a little bit different, a little unique, I like to say. And he was diagnosed with autism at, I think it was three months shy of age four, but he could have been diagnosed at nine months. I mean, if there was any possible person that would have done it, it would have been a lot sooner. He's now 11. He is thriving. He is happy. He's in fifth grade. He's a middle schooler next year and he has taught me so much about parenting and life and the world in general, which I think is one of the unique gifts that autism gives us. And I'm just so happy to share his story and educate the unassuming person about how this is OK and it's OK to be different, and it's OK to say hi and share our life.
Mary: Yeah. And you know, all of my listeners know that the spectrum of autism is very wide, and you have described Cooper on the more severe end of the spectrum. And so.
Kate: Yep, so he was diagnosed right away with it. And it's funny in the notes, you know, it says severe level three non-verbal autism communication disorder later got an intellectual disability, Apraxia, anxiety. It kind of, you know, as moms, it stacks up and it gets like alphabet soup. And I think we start to realize that stuff's really important for things like funding and helping, but it's kind of OK to tuck that down a little bit and just focus on our child as who they are because all those diagnoses get kind of heavy. I always thought.
Mary: Yeah, yeah, well, when you think about it too just to point out for the listeners in the show notes, this will be episode 170. I did a show with an expert on Apraxia. We can link in the show notes. I did one on our video blog on intellectual disability, which Lucas also has intellectual disability. I think I even have something on anxiety so we can link those in the show notes just for helpful information for people. But you're right, it does become alphabet soup. So you've had a lot going on in the last two years. I first interviewed you right after we were shut down. And so you had a new addition to your family, first of all.
Kate: Yep, Winnie is now. She is almost 10 months old. Yeah. And she's our fourth and our only girl and such a blessing to our family. She's just a joy.
Mary: Yeah. So you have Cooper, who's 11, and then Sawyer is how old? Nine. Nine. So they're two years apart, and then you have Harbor, who is three.
Kate: So there is a gap in between....Two Sets.
Kate: And here's what's so funny is I feel like I'm kind of a new parent in a way because, you know, Cooper was so different than the baby books predicted. And then Sawyer just kind of skated through because he was so in a sense, you can just say easy to parent. There were no struggles with him in the beginning. So now I'm like, Oh my gosh, terrible threes are a real thing. This is hard, it's like I'm starting over.
Mary: Yeah, yeah. OK. So the big thing that has happened was one of the big things is you wrote a book that is coming out. This episode 170 is going to be aired for the first time on April 5th, which is the launch date for Forever Boy. When? Why? How did you decide to write a book?
This Inspiration for Forever Boy
Kate: So never had any intention. Honestly, it never crossed my mind to write a book, but I love and adore writing, I've always. That's how I process things. I like to put it out. I like to put the words on paper. I'll even write with pen and paper. It just helps me get through some of my harder moments. And a wonderful woman who is a follower of mine from New York City recommended I meet her friend, who was an agent. And it was this amazing story. I flew out there with a friend just for a nice weekend, met with the agent, submitted a proposal and signed my contract. The next day, the world shut down for COVID. So I had six months to write a whole story together and write a book. It was harder for me than I thought it was going to be. I consider myself to be a writer and it was really a humbling process, a lot harder than I thought it was going to be. So for anyone that's written a book, Mary, all of you, congratulations. It's quite a feat to tackle.
Mary: Yeah, I got my book contract deal. For Turn Autism Around, I got it Thanksgiving week of 2019 and I also had an agent, but I had heard that the publishing world pretty much shuts down from Thanksgiving till February. Yes, I did. They don't really have meanings or decide on things, and it's kind of like, that's the way it goes. So I was really thankful that I had the contract. I started writing in January 2020 before the world shut down and really used that whole year to get my book done. And yeah, so I mean, thank God, you got to meet with them and you got the book deal before the COVID shutdown, which I'm sure will mess things up. But OK, I just want to say for any listener out there, Kate is an amazing writer. She got started on the blog Finding Cooper's Voice, which I mean, the last I checked had over 750,000 followers. Is it? Is it more than that now?
Finding Cooper’s Voice and Coop’s Troops
Kate: I'm at 760 now, which blows my mind because I say this all the time. No one ever thinks they're going to have a following on social media. I have a group of men and women who are writers that are part of this blog group that I have, and I might just, do you know you could go viral and you could have a million followers and they're like, No, and I'm like, Yes, it's real.
Mary: Yeah, right. And that comes with a double edged sword because the more followers you have, the more people with, you know, that aren't going to like you, the more hate you can get, the more famous you can get. And I think you did outline that a little bit in your book how you did have a viral video. Mm-Hmm. I think we talked about it last time and it went viral, right? And that's...
Kate: Yep. And it was actually the first chapter I had written for the book and a bunch of it got cut. It was apparently just a little too heavy and scary because I outlined the death threats and kidnapping of my child, and I had to go to my kids' schools and show pictures and some very scary things. And it was so eye-opening for me. I didn't share anything on social media for quite a bit of time after because I didn't know that I could make people angry just by saying I was sad that my son may never talk and I was worried about his future. I didn't know that that could be negative, and I've definitely changed the way I speak a lot about autism now for a few reasons because I can reach anybody. I didn't know that. I didn't know that I could reach someone that just wants to be mean. I tried to be really respectful of Cooper, and in the beginning again, I didn't know that that many people were seeing my things. I was really naive. So I've changed the way I speak about autism in a sense, but I really do try to stay true to myself. It's the parents' journey that matters too. And I try to stick with that, right?
Mary: And you did. Besides Finding Cooper's Voice. I mean, one of the ways you coped with those viral videos and just a lot of the negativity was you started a small paid group within Facebook called Coop's Troops. And I know I've been a part of it since the very beginning, and I know many of my listeners have also joined because I see them there. And that's a really nice small group for very little fee. Facebook charges to have a more intimate group where, I mean, there's still a few thousand people in there, but it's a more intimate group. And I mean, I think you're very positive about that group and feel supported there.
Kate: Oh yeah. And I mean, any mom, I think that shares on social media, you will get shamed about your kids dirty noses and the sugar they eat and dirty car seats. It doesn't matter what it is, but when you have a child with a disability? Your questions get a little bit heavier than, you know, should I take the pacifier away, should I try medications or do I visit this natural path or do I in? And those are questions that seem to anger people sometimes or potty training questions. I mean, it's hard to talk about those things openly and honestly. So when I started this paid group, it was really so I could have a place to say, you know, my kids got the best of me today. I'm exhausted. I'm tired. What do you use for anxiety? All those different questions. And that's how the group is using these mommas. Ask each other these things and they're not shamed or yelled at or bullied. And that's worth every penny you think.
Mary: And there's a lot of professionals there, too. Yeah, I know a lot of the guests that I've gotten on the podcast have been through Coops Troops and from some of your lives. And I had the IEP women on Amanda and Oh, Kirby, Amanda and Kirby on I had your daughters.
Kate: And it's a lot of speech therapists. .
Mary: The mom of Cash's Voice on, and I'm going to have Jess on in a few weeks. So. So it really is a great community for networking, for information and for a lot of support, which is great. So would your book Forever Boy? Is it more fiction nonfiction? Is it the same kind of writing that we expect on Finding Cooper's Voice and Coop's Troops?
What to Expect for Forever Boy
Kate: It's the memoir style story of us, so it starts out with me as a little girl, which is the opening and how I just dreamed of being a mother and I always played house and babies. I think I was like 12 years old and went right to babysitting and nannying. And I start by talking about what if someone would have told me that my first child would be disabled? Would it have changed my way of thinking? And there are no crystal balls, so we don't we don't know that, and I never thought I would have a child with a disability. I'm always the first to say that because it's just I had no idea that that could happen. And then it goes into my husband. I had a miscarriage first, and then we had Cooper. And really, it is just the ups and downs and turns and twists of his diagnosis, which you think it's going to be so easy. You know, my child has this going on. This is the answer, but it's not. There is no blood test. There is no marker. There is. And we really had to fight for that diagnosis. And then, you know, over the years of trying to get him help and services, nothing fell into our lap. It was just a constant pull and, you know, push and pull for everything. And then, you know, the climax of the book is really I realized I was missing a lot of his life, grieving the things that he would never do. And I had to change. I just had to change who I was. Me, not him. He was fine. He was exactly who he was supposed to be. I was the problem and changed my way of thinking, and I adopted this tagline Find the Joy, which is cheesy to some people, but I had to live in this happy place because it was eating me alive.
Mary: Right, right. And I totally agree with that. You know, people, you know, moms. And then in the beginning, I was like, you know, gunning for every treatment and measuring everything and just, you know, and at some point you have to like, go like, wait a second, I have my own life to my own dreams of my own. You know, and I have other children and I have a marriage. I have family and friends. I have a career. I want it. I remember somebody saying once when Lucas was, I don't know, around 10, probably Cooper's age. And like, you know, I was fighting with the school district at the time, I was in due process and one of my behavior analyst friends said, Why don't you just homeschool? I'm like, No, I'm not, you know, I don't expect perfection. I just don't want the bar to be, you know, lowered. And I know what he needs, and I don't personally have to be there doing that. I don't think that's good for either one of us. And so, no, I'm not, you know, I'm not going to throw myself overboard to, yeah, to, you know, have a life that's not good for me. So I love the fact that I mean your, you know, many years behind me and you and you were saying about how nothing falls into your lap. I mean, teen and adult services definitely aren't going to fall into your lap. And then XYZ like this constant fight?
Kate: Well, it's really important. I think it's. I had someone say this to me once during COVID or something. They were like special education parents who wanted everything handed to them and everything just easy for their kids. And what would I if I can get on my soapbox to just scream to the world if we're not fighting for anything special, we're fighting for basic rights. I felt like I was just fighting for a place for my kid to go during the day and know that he was treated with kindness and included and I get so important. There's this misconception that we want things on a silver platter. Oh no, no, no. I want a bus. I want a bus that will pick him up and bring him somewhere. So because I lost myself to autism for a lot of years and it took its toll on my career and my marriage and how I raised my other son, I still have a lot of guilt about my other son's early years, even though I'm sure was an exceptional mother to him. But then once I, I had to set that down, and I think I could have quit my job too. But who would have? How would I have taken care of my family, you know?
Mary: Right, right. OK. So I mean, your book just sounds amazing, and I have heard you read a couple of excerpts. Is there an excerpt you can read for us that would, you know, maybe you want to set it up and tell us what you're going to read or just to give people a glimpse? Now it is on sale today and forever, Forever Boy, while Kate finds the excerpt. Amazon get it there. It's in hardback. It's on Audible with Kate reading it.
Kate: And I'm not crying.
Mary: Did you not cry?
Kate: I cried one time, but I had to cut it out.
Mary: Oh, OK. And so definitely go on Amazon. We can make it in the show notes. But Amazon, get Forever Boy, if you don't have my book, get it at the same time as the same shopping cart that'll help the algorithm. And when you read it, even if you only read a chapter or two on the first day, April 5th or April 10th, right, an Amazon review, even if you say, Hey, I only got done the first chapter. Write an Amazon review, if you love it, we need all the help we can get. As we said, like Kate got death threats at one point, like we need positive energy, positive reviews and then also mark the good reviews. The top ones mark them as helpful. Mark my good reviews as helpful paternal autism around that really helps the algorithm. Also, when you get the book Forever Boy, and when you're reading it and you go to do a review, hold it up to your face, get a face shot or take a picture of just the book that helps the algorithm too. So just some tips to help Kate's book Forever Boy do well, to help Turn Autism Around, do well and to help any book that you really like out there do well. Let's get a team behind us to really push it. So, Kate, what's your excerpt?
Kate: OK, I will read a little bit. One thing I wanted to say is are two things I've been asked if this is a book, if it's sad and they're going to cry the whole entire time? No, it's honestly a really hopeful book. You're going to have tears. I think you'll probably have some, but it's really hopeful. And the second thing that I've been asked is, is this only for parents of children with autism? No. I have a big following of parents whose or anybody whose life just didn't turn out as they expected, maybe something just took a turn. So please know it's really a story like that to where it's really about Plan B and how important it is. So I'm going to read from Chapter eight and I'm going to read about when I first heard about autism.
An Excerpt from Forever Boy by Kate Swenson
Kate: "When the professionals first told me about autism, they described it to me as a spectrum. I immediately thought of a spectrum of light like a rainbow through a prism. But it wasn't that kind of spectrum, or at least the experts didn't explain it that way. They describe it as a long line, with one end being the most severely affected and the other end being less affected. They threw terms at me like high functioning, low functioning, severe, moderate and mild even levels one, two and three. When Cooper was diagnosed, I told myself he was on the right side of that spectrum, that he was high functioning and that we had won the autism lottery. I convinced myself that when his diagnosis was handed out, we got the good kind. I held on to that term that safety blanket so tightly as if it would protect us. After I learned to say the words, my son has autism out loud and that took me a long time to be able to do. I started saying my son has autism, but he's very high functioning. Our hearts eats lies when we are hungry, and I was ravenous. I soon learned, like most parents do, that Cooper's autism was being ranked on that spectrum. And before I knew it, instead of being Cooper, the little boy with blond hair who loved trains and smelled like the wind, he was a No. A listing of ASD and a file folder. He was data and checkboxes and eventually a graph that would put him on the most severe end of that spectrum, until my sunshine boy became a black and white list of diagnosis is in my death story, dark void of his light. When I pictured that spectrum, the one they described to me, I imagined a long line drawn with a thick black sharpie across a white wall down an endless, bright hallway. It was straight as an arrow. No bumps. No hills. No crevices. It felt clinical. It felt like I was standing alone in that hallway with the white walls and white floors watching, Cooper told the line. Moving from right to left and farther away from me and everyone else. It almost felt like we were doing autism wrong, moving in the wrong direction, bucking the traditional path and dripping bits of color everywhere."
Diagnosis and the Autism Spectrum
Kate: And that's something you'll hear a lot about now is that it is the spectrum, and there's a lot of anger around the spectrum and what it is, and that's how it was described to me in the beginning. It was this line, the stark line, and it's like, you know, yeah, where you want to be and this is where you are. And I don't think it's like that. I think it's different.
Mary: Yeah. Not going to get it. That was beautiful. I got chills. And it is really you. And Lucas was diagnosed in nineteen ninety nine, so there weren't levels. There was more confusion because it was PDDNOS. He got better. He got a diagnosis of PDD NOS with. And he also got the diagnosis at three of intellectual disability at the same time and he was gone to typical preschool without support. So he did look really mild. Yeah. My husband and I both thought it was going to be mild autism, but I was a year plus in denial. So it turned out to be moderate to severe autism. Then, a month later, somebody else diagnosed him with PDD NOS and it was like, Well, what is it? And when I asked, I had the developmental pediatrician and the psychologist from Children's Hospital in Philadelphia in the room. This was the developmental pediatrician, Dr. James Copeland. He was on the podcast that we can link that in, the show notes. He gave a moderate severe autism. The psychologist gave him PDD NOS and a month later, and I said, Well, which is it? And he said, What you want to know is what he's going to be like at eight. Yes, and an 18, and neither one of us can tell you. And he's like, It's like saying something is dark pink or light red. It depends on the day. It depends on the Examiner. It depends on the testing they did. So, you know, it was super confusing. But you know what I've learned over the years, like I did a video blog on can you tell how a two year old's going to do an eight or 18? And we're going to take down the show notes and the answer is no, you cannot tell. Even if it looks super mild, it could. You know, Lucas looked more. And you know, when you said about high-Functioning, I've done the video, blogs and podcasts on high functioning versus low functioning, which is now taboo. I mean, the 1999 and 2000 2004, really before Facebook and Twitter and everything there was no taboo around. Well, really. In 2013, when the DSM four went to five and Asperger's was cut out and PDD NOS was cut out and everybody was merged together, I think they thought more controversial things like that. But within each child are their strengths and needs. And so I say somewhere, a lot of places that if you're a teacher and you have eight kids in your class and you were asked to line them up in terms of who's highest functioning and who's lowest functioning, you would have a really tough time because are we talking about communication? We're talking about problem behaviors, talking about reading math, taking them to a restaurant, how independent they are with toileting and showering and those sorts of things, like with any child are their strengths and needs. And so it really is not helpful to compare kids to say he's high functioning. It's like splitting a room in half and saying, OK, this part is this half of the room is stupid and this is half the room is smart. I am very not smart in some areas. Oh yes. And so everybody, you know, all of your kids, my my other child, you know, you have your strengths and needs, you know, with or without disabilities of any sort. So love everything you said there. I think you know, I know our listeners like appreciating your writing and like every excerpt I've heard, is just more amazing than the first. So what surprised you about the book writing and publishing process so far?
Surprises in Publishing Forever Boy
Kate: What surprised me? That's a great question. Well, you know, I had some troubles in the beginning. Just with writing, I submitted a few paragraphs or a few chapters and my publisher was like what we're looking for and I remember being like, Oh, what? Like, I don't you know, it was. It was when you write for a blog, you're not writing for a boss. I wasn't so like I wasn't ever critiqued on my writing at that level before. So that was surprising to me, and then I got on track. And that was good. And the publishing process takes a long time. It surprises me how long the whole thing takes. And you know how important to your social media following is. I've had some. And you're nodding. I've had some relief. I've had some friends who have published successful books, tried to write second books and weren't able to because their social media following wasn't big enoug now, that surprises me. There's lots of little pieces that surprise me. It's a whole new world, right?
Mary: And you know my book? Was kind of a shorter process. Well, maybe not. But for my book, my paperbacks came out well last week from April 5th, it came out March 29. The paperback version of my hardback version came out March 30th last year in 2021. Your book is coming out April 5th. No coincidence that April is Autism Awareness Month, and that's when autism books need to be published. To take advantage of any PR, you're going to get any kind of push. So also, the timing, I'm sure, was no coincidence that it was autism awareness or acceptance month.
Kate: Yep, yep. It's also funny. So I share our life year round, 12 months out of the year. I've been doing it really actively for three years now. I always typically kind of hide out in April a little bit because that's what everyone is talking about autism. So I just kind of fade back a little bit and let the world share all their opinions and thoughts on autism. So this is going to be new for me to be front and center in April. It makes me a little scared, but not everyone's going to love it. And I think that that's OK to know. That's OK. I think people who are going to read this book are going to resonate with them and help them. If just one mom doesn't feel so alone, I think, or one married couple or one teacher, I mean, there's something there that's enough, I think.
Mary: I'm sure it's going to help many, many thousands, millions of people over time. So what are your hopes for your future, for Cooper's future, for your book, for yourself or your family? What are your hopes?
Goals for Kate and Family
Kate: Yeah. So our family, we're our family of six, which is hectic and crazier than I ever thought it would be. I hope we can get some sense of, it sounds so silly, but we're just like up and down every day. Every day feels like a new day from the day before. We need to get some sort of consistency and schedule in our life. So that is our goal as the family. Goals for Cooper, I really want him to be able to go to restaurants, fly on an airplane and go to his brother's sports games. Those have been my goals for years and we're doing things to get us there. We're not there yet, but he is making so much progress. And then for me to get through this book launch. And I don't know what's next for me. I really don't know. Keep growing Coop's Troops. I think I just love that group. It makes me so happy. I don't know if I'll write another book. I really don't know, but I think every author says that, but I really don't.
Mary: It's kind of like having a second. Like, for me two books, it was kind of like having a second baby. It's like, people are like, Oh, are you ready to think about another? It's like, I need some more time.
Kate: I'm already getting that, and I'm like, Oh, yeah, like, my agent was like, What do you think of this idea? And I'm like, I'm not thinking about that idea. Like, I was thinking about this idea.
Mary: Right, right? Because, you know, there was a lot of time between my first book and my second book and I'm not really sure, either. But yeah, I can appreciate that. OK, so last question. I always end this way, and before I ask it and answer it, you gave me a piece of advice for this last question that I use every single day. Oh, it's one of my favorite answers, but I'm going to ask it. I'm not going to tell you what your previous answer was on podcast 70. So here's the question: part of my podcast goals are for parents and professionals to be less stressed and lead happier lives, not just to help the kids, but for themselves. So do you have any self-care tips or stress reduction tips that you can share?
Self-Care and Finding Help
Kate: And you're wondering if I'm going to say the same thing I said.
Mary: Well, I doubt you're going to say the same thing because it was, but it was such a good one. Like, it's my top favorite answer out of 170 episodes. But I'll tell you what the answer is after you just answer it now because I think you're probably. You know, because the world is just so different in the last two years, so what are your stress reduction or self-care tips?
Kate: OK, so I'm really bad at that. I have none. I mean, fully honest is I literally have the fourth baby changed everything. I would say if I was to have one, I would want to get out to dinner with my husband once a week, except I would need to find help and I don't have that. So I could spend more time with my husband alone without kids. And then I would love to go for a walk every day. Oh my gosh, I would love that. But I'll be honest, I don't have any right now, and it's starting to show and it's wearing on me. What did you know?
Mary: So you said that Cooper plays his iPad really loud and he doesn't. Oh yes, he doesn't wear headphones where Lucas wears headphones. But up until two years ago. Lucas would wear headphones, he'd have his iPad. He would turn it up. loud at points and he would get overstimulated, just agitated. And we were constantly like, turn the iPad down, turn the iPad down. And Kate said her house was very noisy until she got a noise reduction volume reducing app that you could set it at 50 percent of the volume so it can't go up. And so if Lucas gets stimming, like the whole iPad dies and you have to charge it, the noise reduction or volume reduce her app goes off. And so we can tell he's getting overstimulated. I'm like, check, the thing.
Kate: Yeah, there's lots of them, so we have them on the Kindle. That's so funny that you said that. Yes, that has been life changing, and we have multiple devices in our house, so one of them doesn't have it. And yesterday I said, turn it down probably 50 times because he was being very he had an anxious day, but the noise? I go crazy with the noise.
Mary: Yeah, yeah. Do you have any waiver or respite or help?
Kate: We do. And we have two PCAs that we love, but they're at college right now. So finding help here is one of the problems that we have. We've never really figured out the mystery of finding help and good help.
Mary: Do you ever use Care.com?
Kate: I have and I've never. And then Joshin and another one. So there's Care.com and Joshin. I haven't ever found anyone on any of those.
Mary: How about indeed?
Kate: No, I haven't tried indeed.
Mary: Try, indeed, I have found it really good. I don't post like I think on Indeed, we actually posted something. We got 48 applicants and we picked one really good one. Oh, but Care.com, I wouldn't post. I would just do my and I found people that were like Special Olympics coaches, special ed, and OT students. I mean, I found some really good people. I kind of specialize in that. Yeah. I mean, I also have like my nephews and that sort of thing. So thank you so much, Kate. This has just been a lot of fun for me to catch up with you. I am so excited to get your book Forever boy, I'm going to read it. I'm going to do a review. I'm going to spread the word because I really think you're doing something special for the autism community. And I'm so grateful to have found you and to know you and thank you so much for your time.
Kate: Thank you so much for having me.
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.
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