DEEP DIVE: Kate Swenson of "Finding Cooper's Voice" on Parenting Autism

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0:56Heidi Raykeil:All under one roof. Unpack the car once and you're settled in to have fun. And with 22 lodges across the country, you're always a short drive away from adventure. We've both had such great times at Great Wolf Lodge. So bring your pack together at a lodge near you. Learn more at greatwolf.com and strengthen the pack. Hello and welcome to Fresh Take from What Fresh Hell? Laughing in the face of motherhood. This is Margaret. And this is Amy. And today we're talking to Kate Swenson. She is a mom to four kids, a wife, and a proud Minnesotan. She regularly writes and creates videos about her life as a mother and an autism advocate for her website Finding Cooper's Voice on Instagram and on Facebook, where her videos have had millions of views.

1:41Heidi Raykeil:Her book, Forever Boy, A Mother's Memoir of Autism and Finding Joy, is out now. Kate is also the founder of the nonprofit The More Than Project, which supports the needs of special needs families that go beyond the needs of their special needs child. Welcome, Kate. Hi, thanks for having me. I was telling Kate before we started, I'm such a fan of Finding Cooper's Voice. Tell us before we start, you're four kids, how old? So Cooper's 11, Sawyer's 9, Harbour's 3, and Winnie just turned one yesterday. Finding Cooper's Voice, it's about your entire family, but it started as a way to chronicle the journey of your son Cooper.

2:15Heidi Raykeil:So tell us a little bit about him. Yeah. So Cooper, he's 11 now. I started the blog Finding Cooper's Voice on WordPress. It feels like a million years ago now, but I started before he was diagnosed because I was seeing things and feeling things and had no one to talk to about. Doctors weren't taking me seriously about his developmental delays. My husband wasn't quite where I needed him to be. My mom was like, it's okay. So I started writing and it was one of the best things I ever did because I was able to put all my feelings out into the universe. And I highly recommend doing that. and we went on to get a diagnosis of autism for Cooper and then things got hard went through some hard years with his development and really as we settled into his diagnosis now he's a happy thriving fifth grader he's going to be a sixth grader next year which blows my mind it is very very terrifying but he's is that middle school for you it is and it's big it's a big school but He walked in like a boss.

3:09Like he was like, hey, hi, hello. I got this. Yeah. So he's doing good, but it takes a lot of years, I think. It takes some years to figure out this parenting stuff. And even now it throws me for a loop every now and again. Yes. And I mean, I think that's an interesting point that we talk to moms dealing with all sorts of different issues and coming from different perspectives, figuring out who your kid is and what your role is in supporting them is something that we all go through. I also have a kid who's on the spectrum and it's not that different than dealing with all the other confusing things about being a parent that I didn't see coming.

3:49Is that your perspective? Well, I think that all of our children, yes, can throw us for a loop at minor, like high five, tag, you're it. Like that's what mine do. It's rarely that they all come down on me one time, but I'm finding the emotional side of a nine-year-old boy to be really confusing. My three-year-old is feral. He is wild. And I find myself saying no a lot and I don't want to break his spirit, which I never thought that I would have to worry about that. But I'm like, he's going to run the world, but he's going to break me first. So I feel confused a lot of the times. And now that we've settled into autism, autism is my easiest part sometimes, which I want to say that gently, but I feel like I can predict what's going to happen.

4:29But with the emotional Hulk side of a nine-year-old, I'm like, whoa.

4:34Heidi Raykeil:Yes. So let's go back to the beginning of Cooper's story, because you say that people always ask you this. So let's start here. When did you first suspect that something maybe was different about Cooper? So I wrote this in the book, and this was actually just challenged the other day for the first time in my writing. I hadn't had this happen, where I say, I did not know what autism was or the word when he was born. But when I looked down at him, I could tell right away that something was going on. And going on to have three more children, I can triple confirm that. Cooper had a pretty traumatic birth, wasn't breathing, but came to, you know, pepped up.

5:11APCAR scores were okay after a little bit. And I looked down at him and he was wide awake. And he was almost like, she was a big baby. And he was like, trying to like, get out of there. He's like, I got to go. I don't have time for this. Yep. No time for this nursing stuff. No time for any of that. And right away from the beginning, it was very challenging. He struggled to sleep, struggled to eat. He slept six hours in a 24-hour period as a newborn. And my little one slept 23. So I mean, just to kind of provide some context. And I would call my mom. I would call, you know, the nurse online. I'd be like, something's wrong.

5:46He doesn't sleep. And they're like, yes, he does.

5:48Heidi Raykeil:Lots of babies don't sleep, right? Babies cry, mom, right? And send you home. Yes, yes. And I was really, you know, I brought up concerns right away. We had really sweet doctors, but I just don't think they were ready to diagnose. I mean, obviously, you can't diagnose autism that early. But I mean, something really was going on. And I was seeing it early. You said recently in a blog post, you wrote not in the book, but I thought this was interesting that for Cooper, at least early on in his development before all of these interventions and all of this growth that his hard work and your hard work have brought out, that everything was a no for him.

6:25Heidi Raykeil:Can you explain a little bit about that and how that sort of manifested? Yes. And that was, to be honest, the most challenging part. So when I say everything was a no, everything was a no. Going outside, putting on shoes, trying a different cookie than he normally would eat, look the same but different, stacking the blocks, feeding a baby doll. I have, you know, really now funny stories of like giving him like play food, like, you know, like play eggs or different things. And he would like look at it and like, just toss it. Like I was like, just pretend it, you know, give it to mommy, drink the tea.

6:59And it made having him evaluated for anything really hard because we didn't know if he couldn't do it or wouldn't do it. Right. Even today, it's like, I think he knows that, but he's not going to perform for you. Like he's not going to do that. So what that's called is rigidity. And it's in, he was incredibly rigid, but again, we didn't know the word then. And it was almost as if we couldn't get any help because he wouldn't do anything to get the help.

7:23Heidi Raykeil:He wouldn't perform the test so they could tell if it, where he fell on the testing spectrum because he wouldn't do the test. Yep. Wow. And I used to say, I have the only kid that therapy doesn't work for. We would go to speech therapy, occupational therapy. And for anyone that knows occupational therapy, imagine like the funnest room with like jungle gyms and swings and bright colors. I mean, it's just any kid's dream. And we'd walk in there and he'd be like, that's a no for me. And he would like stand at the door. And I mean, it was just therapy never seemed to work for a lot of years. And that was hard, too.

7:54One of the points that you make that really resonated with me, and I think it's really interesting, is you say you would try to determine which parts were your little boy and which parts were autism. as if there's a real kid and then there's autism and that merging those in your mind and understanding that autism and your kid are wrapped together. They are one in the same. Autism is complicated because it feels like a diagnosis, but it's not like cancer. We got to get rid of this in order for the real kid to survive. It's a part of the real kid and those things are married to each other. And I think that's a journey that most parents who have children with autism go through.

8:35So can you talk a little bit about that? Yep. So in the beginning, it felt like autism was given to him by a doctor. And that is in no way true. But it felt like we walked in there as happy people. And we walked out with this diagnosis tattooed on his forehead. And it's like, nope, I want to give that back now. Like, I don't want that anymore. And I have the cover of my book is this beautiful photo. And it's me holding Cooper. And I write in chapter five how autism was always there. It was woven into him, just like the sunlight between us. And it took me a lot of years to realize that. And I actually recently met with a self-autistic advocate.

9:11He's in his 40s. He was diagnosed later in life. And he told me this story about how when he was diagnosed, he felt like his autism was like a suitcase. And he would carry it around and he'd be like, okay, I'm going to set this down now and I'm going to go to work. And I'm going to come home and I'm going to pick it up and be my autistic self again. And then I'm going to go to work and I'm going to sit down. And that was just so eye-opening for me because it doesn't work like that. Cooper is exactly who he's supposed to be. There aren't different parts, but parents do feel that way. And I think it's really important as us, me, once we've made it through, that we help parents see that and really embrace all the parts and not just certain parts.

9:50Heidi Raykeil:You say in the book, Cooper was exactly who he was supposed to be. The person who needed to change was me. Tell us how you felt like you needed to change. I was missing Cooper's life. And again, a lot of parents go through this. You know, our life was therapy and aggressions and self-injuring. And Cooper's behaviors got really, really hard, meaning our doors were locked. We couldn't have lights on. We had to eat with headlamps. We couldn't have lamps on tables because he would break them. He put everything in our bathtub. He lined up chairs. I can go on and on. I can smile about it now, but there was no smiling.

10:23you know, six, seven years ago. But I was missing his life thinking, let's get ahead of this. Let's find the magic thing that's going to help him. Let's get... And I was missing the day-to-day beauty of him lining up 10 chairs and standing in front of them and conducting them like an orchestra. I was missing him, you know, laying on the ground and looking at the clouds and seeing things that I couldn't see. And once I hit my lowest point, which was online and not my finest moment. And I don't regret it because it helped me heal. It got me where I am today and to a place of acceptance and joy. I want to follow up on that.

11:00We're talking to Kate Swenson of Finding Cooper's Voice, and we will be right back.

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13:26Heidi Raykeil:See visibly thicker, stronger, faster growing hair in three to six months with Nutrafol. For a limited time, Nutrafol is offering our listeners$10 off your first month subscription and free shipping when you visit Nutrafol.com and enter promo code laughing. That's Nutrafol.com spelled N-U-T-R-A-F-O-L dot com promo code laughing. I don't know how many people who are outside of autism understand the kind of there is a push pull with autism between parents who are trying to advocate for their kids and a lot of people with autism as adults who are advocating for themselves. They want their identity and their autistic identity to be accepted and celebrated.

14:16And the idea of like, this is not something to be cured. This is something about who we are. But like any parent raising any kids, whether your kid is autistic or neurotypical, there are always behaviors that you think this behavior is not safe for my kid. This behavior is not safe for my other kids or my family. finding solutions for behaviors without denying the autistic self. How do you find that balance? Yeah, that's a really good point. So some of Cooper's unsafe behaviors, he would run into roads towards cars purposely. He would see a car and he would run towards it. It was terrifying. We had some really scary things happen.

14:56He would take picture frames off the wall because he wanted the pictures and he would break the glass with his foot. I mean, really terrifying things that we just we can't have that we can't have hitting we can't have dangerous stuff. So we had to turn our whole focus when he was six years old to safety. I mean, that was our whole every day was safety. I have some rules, actually, we have rules in our home. And it's like, we'll never discipline Cooper for being autistic. Actually, I'm asked about discipline all the time, because someone will see him doing something and be like, wow, he's just being naughty.

15:25No, he's sitting on the floor of Target, because it's really loud. And it's really bright. And it's really peopley. and it's smelly, and we're going to give him some time to rest. So we have rules. We never discipline Cooper for being autistic. We let him stim. We want him to stim. Stimming is when it's like a self-soothing behavior that autistic individuals do. But we can't have stimming that hurts property. We can't have stimming that hurts himself or hurts others. So if we see that, we really work to help him find something else. Like an example, he'll listen to a clip of baby George from Peppa Pig crying over and over again when he's sad until he gets to the point where he hurts himself even more.

16:03We can't have that. We have to figure out why are you sad, pal? Like, what can we do? So I think as parents, we really have to look at, you know, that autistic individual, Cooper as the person, and how can we help you get through what's going on and let you live and grow just as you are.

16:18Heidi Raykeil:I want to ask about Cooper's relationship with his siblings and how you accommodate the special needs of a special needs child with three neurotypical kids who are all featured regularly on your videos. Like I said, I'm a big fan. We also haven't talked about how Cooper is nonverbal and uses a device, an assistive device to communicate and how your three kids have grown up around that and accommodate that and make room for that. I feel like I was a second time mom again recently because I have now an 11 and nine year old Cooper and Sawyer and then a three and a one-year-old. So there was a big gap in between there.

16:52Large gap. And my first two grew up side by side. And it was hard. A lot of my book is about the sibling relationship. When the book came in the mail for the first time, my son Sawyer's like, Mom, it's a book about Cooper. And I was like, actually, it's a book about you too. And he was like, what? Because I say Sawyer saved me. Sawyer kept me in the land of he needed me. He needed me for t-ball and he needed me for different things. He needed me to play. He kept me solely in this land. And that was, I'm so thankful for him for that. He helps Cooper every day. The beginning was hard. It was challenging.

17:30They didn't understand each other. Cooper mostly ignored him. Sawyer has asked questions. I mean, just a couple of weeks ago, he asked if God was still building Cooper's voice. I mean, that is like a punch to the gut, you know, trying to answer that. But one of the things that we have focus on in our home is talking about autism, exposing Sawyer to people with disabilities, an array of them, and encouraging him to be kind. And that has really paid off. He is a tiny advocate now. Him and Cooper fight like cats and dogs, as they should. They're brothers. But he is a really good brother. The younger two don't know any different.

18:05I mean, they think Cooper is exactly who he's supposed to be, just like I always say. They're learning some sign language. They're learning to talk to him that way. But they just climb all over him. They take his stuff. They be naughty with him. It's different than the older two, I think, because, you know, Cooper's really established in himself now.

18:22Heidi Raykeil:Oh, that makes sense. And your household is established in accommodating what he needs and having rules. And it's amazing to see. And the best thing we ever did was have four kids. I mean, as my husband might say differently. It's the best and worst thing any of us ever did, right? Yes, it is. But it's so good. I mean, Cooper has, he's surrounded by chaos and exposure and they push him all the time and challenge him. And I think it's like, it's just amazing that that's happening. At my kid's school, there are kids who have really mixed abilities. And I think there's something really magical when you see, you know, somebody go up to a kid and a neurotypical kid might say, oh, actually this kid uses an iPad to talk.

19:05So here, let me show you like how, And like the kids don't bring as much heaviness to the situation as we often do as adults. They just kind of, as you said, this is who this person is. They don't bring in a whole thing of like, is it good or bad who this person is? Is it happy or sad who this person is? They just say, this kid talks with an iPad. Let me show you. And there's something really special about that. The best thing about kids, just to reiterate that, is like they will ask questions. They're not afraid. They will ask that, you know, parents are like, shh, shh, shh, don't say that. Kids will ask these like curious, adorable, gut-wrenching questions.

19:41And I get a chance to answer them and really like narrate and dictate how they're going to see it. And then the best part is they go home and tell their parents. Right. That is what's so good. Like when we moved into our old neighborhood, we talked all about Cooper with this group of kids and they went home. And like, I'm sure they were like, mom, there's a kid over there that has autism. You know, I mean, that's so great.

20:01Heidi Raykeil:Yeah. I wanted to talk about one of the most relatable parts of your book, I think. And then it's the experience of being in a very different place from your spouse when you're dealing with a significant situation, let's put it that way, of any sort with your kids. That one spouse goes around the bend with care and worry, and one spouse says, it's probably going to be fine. And both of each thinks the other is handling it the wrong way. And you write about this very openly in your book. Can you talk about that process for you and your spouse? I knew right away that something was going on with Cooper, but I was also, I nannied, I babysat from the beginning.

20:38I was, you know, really around children a lot. And my husband wasn't. I think the first diaper he ever changed was Cooper. You know, Cooper was all he knew. And we both could say, you know, we have a challenging baby, lots of crying, not sleeping, but that was really the extent of it for him. And I had to push and really fight to get seen and heard for, you know, to identify his delays. And a lot of times I feel like I was going at it alone. And that's a confusing part because I don't want to be right. Like I don't want him to be out of sick. And I felt like I was kind of on this island, like help me help us.

21:13My husband was wonderful in the sense that he came to every appointment. I mean, he was right there, but he wasn't there. If that makes sense. Like, Like, yeah, he was physically there, but like, because it's like, you know, I don't think he believed me and he wanted me to be wrong. And eventually I just decided to do it alone. And spoiler alert, my husband and I did get divorced and we spent some time apart, but I saw him every day because he, the kids are at my house. So he came over every single day and we had holidays together and trips together because we were just bizarre people and then ended up getting remarried.