Finding Cooper's Voice with Guest Kate Swenson

Tina: Hey everyone, I'm Tina.

Serena: And I'm Serena, and we are the Mental Health Mamas.

[MUSIC]

Tina: Welcome to No Need to Explain. We are so glad you're here.

Serena: First as always a quick disclaimer.

Tina: We come to not as mental health professionals or experts in the field, but rather as parents with lived experience who are on a mission to normalize the conversation around mental health.

Serena: If you or someone you love is experiencing a mental health crisis, please seek professional support. You'll find a variety of resources in our show notes and on our website noneedtoexplainpodcast.com.

Serena: We invite guests on our podcast in several different ways. Sometimes potential guests reach out to us. Sometimes we reach out to people who we might have connections with. And sometimes we find them very organically. So today's guest is an example of this third category. A few months ago, I was at my local library with my kids and noticed a book called Forever Boy by Kate Swenson. I picked it up and I knew that I had to read it. And then just a few pages in, I knew that we were going to ask Kate to come on the podcast.

Tina: Kate Swenson is a proud working mama of four, and she lives in suburban Minnesota. She lives for coffee, preaches kindness, like her life depends on it and is continuously surprised by the twists and turns of motherhood. Her son Cooper was diagnosed with autism at the age of three and life has not slowed down since. Kate, welcome to the podcast.

Kate: Hi, thanks for having me.

Serena: Yeah, so you mention on your website that you recall in the early days of Cooper's diagnosis that you were looking for your people. You were looking around for the families like yours and you couldn't find anyone. And I, you know, I could so relate to this feeling of isolation. When my second born was young and really struggling with her behavioral health and, you know, so we were unable to like go to the park and things like that that you might imagine a young family would do. I literally thought that no one else in the world was dealing with something like this. Can you talk a little bit about what that time was like for your family?

Kate: Yeah, you know, when I look back on the hardest parts of our autism family journey, I would definitely say it was the isolation. It surprised me the most. It wasn't a surprise that Cooper was diagnosed with autism. He was nonverbal at age three and a half. It didn't, we weren't one of those families that was surprised when we got, you know, got the word. But, you know, when we came home and we started the services available, we thought it was going to be fast that we were going to help him catch up fast. We're like, we're doing everything. And it was actually the opposite. And eventually we couldn't even leave our house to go into the community anymore. We couldn't go for walks because he would run into streets. We couldn't go into the front of our house because he would move towards traffic. No matter what it was, and eventually there were locks on every door and alarms on windows and alarms, you know, throughout the house.

And I almost couldn't describe it to the people in my life because they wouldn't understand. I would say things like, you have to lock the door, make sure the door is locked. The door is not locked. And people will be like, what are you talking about? You don't understand. He will run. And car rides got unsafe so we couldn't go in the car. We had, I was just chuckling with us the other day. We had a period of time where we couldn't turn left. And I've actually had other parents say the same sentiment. We couldn't turn left. And we never understood why I never learned why it would just cause full blood meltdowns. We couldn't do stoplights or drive through his or so. For me, the isolation is what I talk about the most now because it impacted me the most.

Tina: Yeah. And finding your people, I mean, that's what it's clearly how Serena and I connected because we felt that extreme isolation. There are just some things you can't like, we can't turn left. That is not something everyone gets about you, right? And, you know, it's why our podcast is called, No Need to Explain because we find that our people come here, right? They want to hear all the things that other people might not relate to. We want to be relatable. Anyway, let's move on to your Cooper who is awesome. Well, I don't know him personally, but I've read your book and it feels like we know him and we know you. So you are on a huge presence on social media and it is clear that your love for him is boundless. It is amazing to see the two of you together and to watch him with your other children. So tell our audience about Cooper.

Kate: So he is 11. He is a sixth grader and honestly the happiest person I have ever met in my entire life, which that is what we want for our children to be happy. He still has the diagnosis of severe level three nonverbal autism of the language impairment, intellectual disability, all that stuff. It's all there, right? But we have really learned as his family to kind of tuck that away in his drawer in a drawer. We think about it when we need it. Otherwise, he's just Cooper. And we've figured out a way to make things work, which is what I really encourage families to strive for, meaning we have someone who comes to our house to help help us when we have to go places and he can't go or we have someone come with us so we can have extra adults if we have to be in the community. We found activities that work for our family, which for us is boating and going to one park that we can go to and swimming and those types of activities. He loves trains. He loves penguins. He loves all these unique things. He loves old-time train movies and little kid shows. He's a unique soul, I like to say. And we've really settled into his diagnosis, which doesn't happen with the snap of a finger. It didn't for us, but we're there now and so happy to be there.

Serena: I wonder if you could talk just a little bit about the idea of a diagnosis of non-verbal. I think there are some misunderstandings about that because from what I have seen, Cooper communicates with you all the time. Could you talk about that a little bit?

Kate: Yeah, so just to kind of go back to the beginning, Cooper never babbled. That's hard for people to understand, but because he wasn't quiet, but he never babbled as a baby, even one and a half year old now when she's talking non-stop. Cooper made sounds from his throat, but they weren't word like and they didn't approximate to a word either. It was a lot of screaming and a lot of gesturing and a lot of pointing that sort of thing. And I will never forget the day that a speech therapist said to us, you need to prepare for a life without words. We're not seeing what we need to see. At age five, his language was that of a six-month-old. That devastated me, but it also motivated me to look at other avenues for communication. We dove into a speech device, which has been wonderful for him. I think of it as an iPad where he touches picture buttons and it says the word for him, which has been wonderful. And then around age eight, he did start communicating.

So he had huge increases in his receptive language, meaning he was understanding what we were saying. And ever since then, he has started to add some words in. Now, with me, he's conversational. So with me, he can make sounds and words. He probably has 20 or so, but you might not understand them. So for example, uh-uh, can be dad, donut, or Dora. And I typically know what it is, because I'm his mom, but sometimes even dad doesn't. He's like, what's he saying? And I'm like, obviously it's Dora. But he's going to hold on to that diagnosis. I'm thinking for a while of nonverbal or non-speaking, whichever you choose to use, because if he was in a setting, maybe with a police officer or a stranger, he would not be able to communicate verbally. And the one thing I want to say to parents listening that don't understand, um, communication is so much more than words. And I grieved the words. I can admit that. I want to hear. I love you. I want to hear my favorite color. I want to hear all these things. And I don't know if I ever will, but I'm so thankful that he can communicate in other ways now.

Serena: Yeah, that's amazing. So as I mentioned in the intro, you've written this amazing book called Forever Boy. And truly, I cannot recommend this book enough. Certainly for families dealing with a diagnosis of autism, but really any kind of diagnosis, I think it's extremely helpful. It's very honest and open. It's raw and yet hopeful at the same time. I would say I found myself nodding as I, you know, zoomed through the book. And I think it really gives readers a sense that we're all in this together. And so clearly Cooper is the subject of the book, but you stated that, um, this was more about your journey as a parent. Can you say more about that?

Kate: Absolutely. So when you have a child diagnosed with something or even when you have a baby in general, right, everything is about that child. And it should be, you know, from from day one, are they, you know, being fed enough or they warm enough? Are they getting what they need to learn? And you know, and then you have a diagnosis given to them. And it kind of increases the intensity of how do we help this child? And what's overlooked, much like the postpartum journey is the mom is the parent is the, you know, the person raising the child, whoever that may be, it's hard. It's stressful. There's a lot of PTSD in parents that have child, children with disabilities for lots of reasons. There's, there's a grief journey. There's lifelong worry. And no one ever talked to me about it. And it was almost stigmatized if I, I just mentioned this last night on a, on a call I was on, um, about the things people say. And I remember I would, you know, be crying or upset with people I love and say, you know, this is really hard or aggression's hard or not hearing him speak is hard.

And people would actually say to me, well, at least it's not cancer. That was a really common thing that was said. And other moms have had that said to them too. And it really just negates the journey that I had to go through. I had to become a completely different person to, you know, my, my patience, my dreams, my expectations, everything changed. And I won't say it all changed for the worse. A lot of it changed for the better, but it was a shocking change. So when I speak now, I talk about the, the parents journey and how I became a completely different person, a lot better for certain, but a completely different person. And it didn't happen overnight.

Tina: Yeah. So Serena and I have supported parents for about nine, I don't know. I always say this and that I'm like, wait a minute, it's another year for about nine years. Um, and it is that very thing, right? It's really shoring up that family because I, I do feel like there are lots of wonderful services for our kids in the world. And we are the foundation of that. And if we can't be supported in ways that are meaningful. And for us, honestly, it was that connection, right? That connecting with other people, we're not, we are not performing brain surgery in any regard, right? We are connecting and your points. We are empathizing, which is very different than sympathizing, right? Um, or, or minimize, I mean, seriously, the, I can't say enough about empathizing, it really is super important.

So let's shift a little bit and talk, and it's not even a shift, right? It is more about you. There are lots of statistics out there about parenting kids who struggle in the divorce rate. And in your book, you speak very openly about the fact that you and your, your, your now husband who was your husband and house your husband again, right? Um, that's, you know, it was, you, you all divorced because it was really so stressful. And we're not going to quote statistics here, but I think it's validating for people to hear that part of your life. Can you, can you just talk a little bit about that?

Kate: Yeah. And you know what's interesting is I just saw a post a reel on Instagram from a fellow Special needs mama that said, parents of children with disabilities who get divorced are giving up. And I remember I was like, what? Oh boy. Okay. No, no, okay. And let's just turn around. But so my husband and I were, um, married, um, and just had this really simple life. We lived in northern Minnesota. We were, we fished, we camped. We did all those things loved walking our dogs and had a baby right away. So excited. Cooper was, is was the cutest baby ever. Um, but right away, challenges happened from, from day one. Cooper was a really incredibly challenging baby. Never slept and struggled to eat. And, um, from early on, I just, you know, assumed that weight of, of worry of bringing him to the pediatrician and being like something's going on here and, you know, pushing for answers. And in my husband is, was a very hands on dad, he just didn?t understand. He wasn?t around babies. He wasn?t around kids. It was his first time. And, um, he only knew Cooper. So he was like, yeah, this is challenging. But this is all, I really know. So this is our life and which is a great attitude to have in a sense. But as time went on and Cooper's care intensified, meaning, you know, multiple therapies throughout the day, multiple doctors appointments, pushing for answers, all the things that come with raising a child the disability, he would show up, but he didn't really carry the weight of the worry. He was very happy and content with me carrying it.

And, um, I eventually realized and felt like I was doing it alone. And I'm like, you know what, I'm just going to do it alone. I, it's, when I actually wrote that part in my book, I remember my editor being like, you're so casual about it. And I was like, well, I wasn't casual at the time, but it was a really easy answer to a question that was out there. I just, I couldn't defend my choices anymore. I couldn't try to make him understand. And we took about a year apart. And it was one of the best decisions we ever made for our relationship.

Tina: Yeah, and it sounds like reading that part and hearing you today, a little bit of that incongruity with the acceptance piece, right? And everybody's journey is different. And that includes the adult part of it, right? Um, I think I personally have experienced a little bit of that also. Um, and everybody, and I've watched it happen with other families as well. As I said, we've supported parents for nine years. So we've seen this happen. Um, yeah. So interesting.

Serena: Yeah. Yeah. And so, um, so everything feels different now or like, how, how was how did it all come to be that you're back together again?

Kate: So, um, we continue to stay really close throughout a divorce that my, I had a home that was the home base for the kids. So Jamie came to, to the house pretty much twice a day to pick up and drop off. And then he would take the kids for, um, a couple days throughout the week or whatever. And so we continue to spend holidays together. We continue to spend our time together, which is, you know, different than a typical divorce, but I think it speaks to the fact that we were still very much loved each other. It was just the stress of the day that we could handle. And after a couple of, you know, a year or so of that, I had firmly believed that if I did all the therapies and did more and more and kept pushing and kept believing in Cooper and kept that he would eventually get better.

That's, that's how autism was presented to me that you just, you know, they do eventually get better. And after a year or so of me just turning myself inside out working full time. I had a big job, raising two kids, paying my mortgage and just pouring myself into Cooper, he, he didn't get better. He was actually regressing. And, um, it felt like we were frozen in time and the world was just passing us by. That's what it felt like. And I, and I started to my mental health really hit rock bottom. And I almost believed, like, started to believe that I was unlovable, that I was just meant to live in this alone. Um, I pushed people away. And I, you know, I just turned invisible. And I met Jamie for lunch one day. And I said to him, I'm sorry that I failed us both. I thought that I could fix this. And I, I couldn't. It's actually a lot harder than it was because he had been kicked out of school. And, and he, the man who is not very affectionate to this day, our love languages are very different. He stood up and gave me the biggest hug. And he said, you didn't fail. You saved him. You?ve done everything. And it was such a powerful moment for me. And really, from that moment on, we came back together really quickly. And we were on the same page. And we split up our autism duties, which to anyone outside our world, there's a lot from Medicaid, to Tefra, to waivers, to doctors, to insurance. We split it up. And it was hard for me to let them go. It was really good. And we've never had a fight about or disagreement, even about Cooper's care since. We've been on the same page.

Serena: So that is a great transition into self-care. So it's something we like to ask all of our guests about. And clearly, you're beyond busy. And we know that this question can be especially hard for, you know, parents caring for, you know, for kids with any sort of diagnosis. So how do you think about self-care? And are there specific things that you do?

Kate: Well, so I have four kids. And my youngest, I actually just quit nursing her at 16 months last week. And she's a horrible sleeper. You'll ever see in your entire life. And she's a horrible sleeper. So I'm struggling in the area of self-care. I can be, you know, really honest about that. I've, you know, I've noticed that the pounds are packing back on. I'm staring 40 down the corner. Or the hallway. And I'm, I'm realizing that if I'm going to live a long, healthy life and, you know, give Cooper his best life, which is something that, you know, a lot of us have to think about, I need to start caring more about myself.

So, um, today, actually, there's never a better day to start than today. Yeah, I am going to get outside. I'm going to go for a walk. I'm going to start eating some more healthy foods, drinking water. It's, I think self-care is just a bunch of little things that add up to make a big thing. So I have to start with really little things.

Tina: I love that. And, um, I think we all think we've got to do it all right now and that one foot in front of the other for sure. That is, that is for sure. So we want to make sure, because I'm sure after hearing you today that people want to connect with you and learn more about what you have to offer the world. So tell us a little bit about where people can find you.

Kate: Yeah. Yeah. So I have a website called Finding Cooper's Voice. It's www.FindingCoopersVoice.com. And on there, um, you can find blog posts that I've written blog posts that other parents or caregivers or grandparents siblings, the whole gamut have written. I do that because I only know my story. And there are so many other stories of, um, teens with autism, um, girls who are diagnosed later adults, whatever it may be, or for that fact, any disability. So you can check out my website. I also, like you mentioned wrote my book, Forever Boy. And that is available on Amazon and book stores. And that's really our, our family story of how we got through some of our hardest days. And I don't hold back. And, but it's also a really beautiful, hopeful story. It's not sad. And I think it's so important. I've had people say, like, I don't want to be sad. And I'm like, it's not. It?s wonderful. It's a happy story.

And lastly, I have a nonprofit that's called The More Than Project. And I co-founded that with my friend Amanda during COVID to bring free mental health counseling to caregivers, um, via telehealth. And that was our start into the nonprofit world. And it's grown from there now to in-person events and helping teachers and siblings and all the folks that, you know, rally around a person with a disability. And that's really our passion project. Because I think we can get so caught up in the world of social media sometimes that you have to have something to fill your cup up. So giving back, we literally just raise money and give it all back 100%. So it's been wonderful.

Serena: We will make sure we include all of those links in the, in the show that some people can find you, because I'm sure they want to connect with you. So before we bring this episode to a close, if you had to give advice to your former self before you, you know, sort of the beginning of your journey, what, what would you say to yourself?

Kate: It's going to be okay. I feel like there were so many times that I was so low and so bleak and so so sad because I really couldn't get through the day to day. And there are parents out there who can relate to that. And what I wish someone would have told me was, it's not going to be like this forever. You're going to get stronger. You're going to figure things out. Cooper is going to change. He's going to get better in some areas. Some may stay the same. Some may get harder. But he is going to change and grow up. You're going to add people into your life that are going to help. You're going to find the right village and the right support and the right services. And it's not going to happen overnight. So hang in there. It will get better. And, you know, I once had a mom say to me, it was super powerful. She said, for some families, there is no bright light at the end. And I, you know, I said back to her, I'm like, but there is. There is in some areas. There is, if you can find the right people, there is. If you can find the right services, you just can't be stuck. And it's taken us 11 years and we've really found a good place.

Tina: Awesome. So Kate, we also want to make sure people can connect with you on social media. So I know I watch you on Facebook a lot. You do a lot of live videos, which we have not been brave enough to do, but you are great at them. So tell our listeners a little bit about where they connect with you on socials.

Kate: Yep. So I'm on Facebook at Finding Cooper's Voice. And that's where my big community is. I'm just shy of a million followers, which is super exciting.

Tina: That's awesome.

Kate: A million people that Cooper has impacted. I'm on Instagram at Finding Cooper's Voice as well. And that's more cute photos and just fun little, little stories. And I recently just joined Substack. So if you're interested in more writing, which I love to do, I'm a writer, it's my passion. Give me a follow on Substack at Finding Cooper's Voice.

Serena: Okay.

Tina: That is awesome. Thank you so much for taking time out of your Uber busy schedule to come and be with us today and to share about Cooper. And mostly about your journey, because truly that is what we're all about is the is the personal journey. So thanks, Kate.

Kate: Thank you.

Serena: And so podcast friends, we are as always grateful for all of you listening and supporting us. You can help us out by visiting up a podcast. Leave us a review. Subscribe and please share with others. You will find more content on our website. Noneedtoexplainpodcast.com. And you can also connect with us on Facebook, Instagram, Twitter. You can call us to leave a voice message. You could share a bit of your story. Tell us what you think of the podcast or just call to say hello.

Tina: And this is your gentle reminder to take good care of yourself while you're also taking care of your people.

Serena: Thanks so much for listening.

Tina: Bye.

[MUSIC]