Kate Swenson, FOREVER BOY
Creator of the blog and Facebook group Finding Cooper’s Voice, Kate Swenson, joins Zibby to talk about her first book, Forever Boy: A Mother’s Memoir of Autism and Finding Joy. The two discuss why Kate felt comfortable sharing more personal information in this book than she does on her blog, how her family dynamic has evolved over the last eleven years, and how she manages to keep such a sunny disposition. Kate also shares how Covid impacted Cooper and his treatment, as well as her favorite parts of the Facebook community she has created.
Transcript:
Zibby Owens: Welcome, Kate. Thank you so much for coming on “Moms Don’t Have Time to Read Books” to discuss Forever Boy: A Mother’s Memoir of Autism and Finding Joy.
Kate Swenson: Thanks for having me.
Zibby: It’s my pleasure. We had just started talking about motherhood and especially both of us being moms of four and sleep issues, which plague most parents I know in some way, shape, or form. You were saying your youngest, who’s eleven months, is just not a sleeper. I have a not-a-sleeper too. She still doesn’t really sleep.
Kate: It’s like they don’t need it. That’s the part I don’t understand. I want to understand why. I’m a why person. She’s like, I’m good. She sleeps in in the morning. I have to get up at six thirty with the other kids. I’m resentful of her sweet baby head in bed.
Zibby: Maybe she’s on a different time zone.
Kate: Oh, yes, she is. The nights are for partying.
Zibby: Oh, my gosh. At least, she’ll be really fun later.
Kate: I think sleep deprivation is just torture. Everything changes in my life, from what I eat — I crave carbs. It’s like a hangover. I’m not productive. I don’t want to exercise. It’s hard to live in that state for a long time. My oldest is autistic, so didn’t sleep for a lot of years. It’s just been so long. It’s like, I’m done now.
Zibby: I have to say, I am divorced and remarried, and that is the major perk, is that every other weekend I can sleep. I feel like you need a weekend away to sleep. You might not need a divorce.
Kate: My husband and I have talked about getting an apartment. There’s beautiful apartments going up near our house. We’re like, “What if we rented one and just used it as a sleep cave?” I was like, “You’re onto something. That is a thing.”
Zibby: Yeah. You could just call it an office.
Kate: I know. We’re working.
Zibby: You wrote this beautiful memoir. I don’t know when you did that in the midst of all this craziness. Although, I hate when people say that. All to say, I am very impressed that you also did that, not to mention how detailed it was. You remembered or wrote down or something, everything related to Cooper, from his birth to just all the details of the scores, and maybe this wasn’t right, and then comparing him when your next child was born and all of it, all the stuff. Did you know all along you were going to write about this? Did you keep a journal? How did this all happen?
Kate: I was a blogger back when blogging was super cool, back when the WordPress platforms were the hit. I started blogging about Cooper. I would just write daily. It really, essentially, was a journal because no one read it. It was just me. It was raw. It was detailed. I was able to go through his whole life, which was very emotional. I went through it in six months and wrote this whole book about him. I dug up a lot of feelings. I dug them up, but I healed from them too. It was great that I did it that way.
Zibby: Interesting. Then when you were writing, you could go back to the blogs and pick the best pieces and put them in the book?
Kate: Yeah, and fill in the details. I will tell you — I’m sure you know this. When you write a book, obviously, your publisher wants new content. I was like, I feel like I wrote everything down. I have had readers say to me, many readers, I didn’t know that about you. I thought I knew everything. I did master that.
Zibby: Oh, that’s good. What’s something that you feel like you included in the book that was not in the blog that people were surprised by?
Kate: My husband and I were divorced and remarried to each other. I touched on that a little bit, but out of respect for our family, I didn’t go into it in the blog that much. Also, aggression, which is a big thing that families of children with autism go through, I don’t talk a lot about that, or medications. I’m pretty tight-lipped about that because in a blog, you can’t control the narrative. Someone can stumble upon it and read a paragraph and be mean and make judgements. In the book, I could tell the whole story and how it fit in there. I went into all those details.
Zibby: How do you feel about them all being out there now?
Kate: I had some funny things that my husband said to me because I do have a little bit about being on Tinder when we were divorced. He came home and he was like, “Tinder, huh?” That’s the one word. He was like, “Tinder. Hmm.” I’m like, oops, got to go.
Zibby: That’s amazing. Wait, so tell listeners more about what leads a couple like you to get divorced and remarried.
Kate: My husband and I were very happily married, wanted babies right away, had Cooper. All of our friends, we were in that age where everyone had babies at the same time. We watched them go back to living in the sense that they were still doing camping or boating or whatever their hobbies were, and our life slowly turned off. Meaning, it was doctors’ appointments and therapies and IEPs. We couldn’t go out in the community. We couldn’t go to restaurants. We have stories of camping and needing Wi-Fi and Cooper screaming and people asking us to leave, just horrible stories. Eventually, we couldn’t do anything that we wanted to do. We had to move to get Cooper services, which we willingly did, and left behind a life that my husband loved in a rural area. I just took on a lot of his care and became a martyr, which I fully admit. I was the only one that could help him and the only one that could give him what he needed. False, by the way, but that’s how I felt. I pushed my husband away. He retreated willingly just because it was so hard. We spent a year and a half apart. I joke that he spent it in a boat. I spent it in the gym and drinking. I don’t know what I was doing, to be honest. I was surviving. Came back together and had two more kids. It’s been quite the love story.
Zibby: That’s amazing. What are you doing this time differently? How are you making sure that you don’t slide back into that?
Kate: With four kids, that’s really hard. I’m going to be honest. We do not have a lot of time for each other. There’s just not one second in the day. What we do differently with Cooper — for anyone that doesn’t know, when you have a child with a disability, it’s endless amounts of paperwork and appointments, more than you could even imagine. When I worked full time, I would say four hours of every day of my work week was doing things for his care with phone calls and emails and stuff. My husband and I split it up. We each have our own things. He handles Cooper’s medical billing. I handle therapeutic horseback riding. We just split it up. It saved us because he understood the weight that I was carrying alone. We split it in two.
Zibby: Wow. How did you get past the — when you break up with someone — it’s not just breaking up. You got divorced. I just feel like once you’ve made that decision, you carry a lot still. That’s like — what is that term? I don’t know. When you make a decision and then you find all this evidence to support it and you have to double down if you’re not sure because that’s what you chose. Sometimes it can be hard to then strip all that away and get back to basics. This is the worst-phrased question of my life. How did you do that?
Kate: Here’s the interesting thing. We really didn’t have any other problems besides the way we were grieving and accepting autism. That was really the hole in our marriage. Not Cooper. Cooper was perfect. It was just the way we were carrying the weight. I was super emotional. He was super laid-back. I was like, “Get on the autism ride with me.” He’s like, “I’m on it.” That was really our only struggle. It’s probably my favorite part of the book. We came together for lunch after a year and a half. I said to him, “I failed. I devoted my whole life, everything about me. I went all in to help Cooper learn to talk and live in this world and a world that accepts him.” I went into all the details. I was like, “I wanted to tell you I failed. If you hate me, you hate me.” He stood up and hugged me. He was like, “Cooper is everything because of you.” It gives me goosebumps right now. He finally acknowledged everything that I had sacrificed. He moved in two days later. I’m not lying. Also, The 5 Love Languages really helped us too.
Zibby: Yes, that book is great. I love those. Good tips. How is Cooper now?
Kate: Wonderful. He’s my easiest.
Zibby: Really?
Kate: I’m joking. All four of my kids are uniquely challenging in their own ways. Cooper, he’s eleven. He’s a fifth grader. He has some words. He communicates amazingly in a multitude of different ways. He has horseback riding and Miracle League baseball. He loves to be home. As long as he’s home and he’s not being challenged in any way, he’s just the happiest person you will ever meet. He wakes up joyful every single day. We like that life for him. We built a life around him. We still can’t really go out in the community easily. There’s no restaurants. There’s no airplanes. Parks are hard. No grocery stores, that sort of thing. That will forever be a challenge until we figure it out. I will tell you, he’s way easier than my emotional nine-year-old. I will tell you that.
Zibby: Wow. Different kids different ages bring up all these unique challenges. It’s having to deal with all of them at once and you being the one carrying that burden, at least shared with your husband, but still.
Kate: The way I describe families of four kids is moments of chaos. You’re going along, moments of chaos. Then Cooper, what he does is, I would say he turns the dial up. It gets 110 degrees, real hot, real fast. We can see it coming, things imploding, but we’re able to pinpoint it now. We’ve settled into autism. We’re learning right alongside him. That’s all you can hope for.
Zibby: Do you ever get any outside help so you can go to the gym or get some time away to regain your sanity?
Kate: That’s the hardest part. It always has been and I think always will be, is getting good care. Cooper’s essentially nonverbal, so we don’t trust really anyone with him. We do, but we don’t. He’s so vulnerable and can be so challenging. It’s hard to use grandmas now because grandmas are getting older. Cooper’s getting bigger and stronger. We have a few college girls that are coming home on May 15th. I have a countdown. I’m so excited about that. I think that will be a lifelong challenge, is getting good help.
Zibby: Man, you’re amazing. I’m serious. You’re so positive. You’re literally bouncing up and down with a big smile on your face talking about these really challenging things that could sink ships.
Kate: The thing is, I’ve actually had people online that say, you know, you’re glossing over severe autism. You’re not talking about the hard parts of severe autism. I talked about the hard parts for a long time. I really did, really honestly and openly thinking that no one was ever going to care or hear what I had to say. I went viral in a lot of different ways. That’s terrifying. I realized that if I wanted to have this discussion about severe autism, I needed to do it in a book or I needed to do it in smaller groups where I could make sure my message was being heard. When you just blast it on the internet, it reaches the depths. It’s not pretty. Nope.
Zibby: Interesting. You had this really beautiful passage which I totally related to. I’m hoping I can find it. You said, “I am a confident woman. I know my role as a wife, a daughter, a friend, and an employee, but as a mother, I have found myself in a place of uncertainty where I can’t figure out who I am or what my role is. I know many, if not all, mothers feel this way at some point, the pressure sometimes suffocating. We are our own biggest critics. I don’t feel confident in how to help my son. Yet I’m expected to. The decisions to help him felt monumental while I felt like I was playing a game with ever-changing rules. And on top of that, I am in between two entirely different worlds, and I don’t feel whole in either of them anymore. I long for them to overlap. As the boys age, they rarely do.”
Kate: I always do this visual where there’s the special needs world. I’m holding onto Cooper. He’s pulling me. Then Sawyer, his younger brother by two years, is in the world of baseball and hockey and play dates and birthday parties. He needs me over there. He needs me. I often feel more comfortable in the special needs world. That hat fits better because it’s just easier to talk to other people and be in that world. I still don’t know where I fit in. I really truly don’t. I just try.
Zibby: Do you have a best friend or somebody that you confide in regularly? I keep asking because I’m like, you must have more outlets. How could you keep all this in?
Kate: Three years ago, I created a supporter group on Facebook where I brought in a couple thousand — invited them — special needs moms. I was like, there have to be moms out there that think this is beautiful but also say it’s really hard and are scared for the future and are not angry all the time. It can be a confusing world, this motherhood stuff. You got to find who your people are, who you align with. That changed my life. I have so many friends now where we can text each other and say, I give up, or whatever it may be. Cooper got up at three AM this morning and asked me to buy a train movie online at 3:15. We can talk about these things. That’s changed my life.
Zibby: Did you buy the movie?
Kate: Yes. Yes, I did.
Zibby: Love it. Amazing. Tell me a little more about the book itself. When did you decide? Things went viral. How did that become a book? When did this become a book? What was the process like of just hammering it out and getting it in and all of that?
Kate: It’s a really cute story. I was a writing blogger for a long time. Then when I started Facebook, I would do videos, just literally talking into my phone and talk about different parts of autism. That’s when I had a lot of things go really viral. Wanted to quit numerous times and kept going. I picked up a follower from New York who was just absolutely wonderful. On every live video, she’d be like, you should write a book. You should write a book. I was like, no, no, no, I don’t have time. I don’t know you. Ended up connecting. She connected with her neighbor, who’s an agent. I flew out to New York, had so much fun. Wrote a proposal, submitted it. Park Row Books, which is part of HarperCollins, bought the book. I signed on a Friday or whatever day it was. On Sunday, the world shut down for COVID. It legit shut down. We got the email from the schools. I was like, but we still have Cooper’s therapy. Shut down. We’re talking, therapy is year-round. It never ends. I was blown away. Daycare ended. I had six months to write sixty thousand words with three kids. Then I found out I was pregnant. Surprise. It’s a blessing. It was really hard. I questioned my ability to be a writer. I didn’t know if I was good enough. I didn’t know how different writing a book was from blogging. I think it’s perfect. I’m so proud of it. It’s exactly what I wanted, but it was hard.
Zibby: Wow. How did you manage everything during the pandemic?
Kate: I wrote at night. My husband and I have these funny stories that we tell now about fights where I’m like, “I need to write ten thousand words.” He’s like, “Write now.” I’m like, “I don’t feel inspired.” He’s an insurance agent. I’m like, “You can run your quotes anywhere. You have to be in the right mind space to write.” For me, it wasn’t as simple as that. I wrote a lot at night. The hard part was just keeping the kids out of the office. That was hard. Now I look back, and it feels like a blip in time. I did it somehow.
Zibby: What about Cooper? Did he get any services during that time, or everything stopped for him as well?
Kate: It was twofold. It was very, very hard that all of his services ended, I’m going to say for four months. The kids with special needs got to go back before the other kids in our school because they don’t respond to Zooms or virtual or anything.
Zibby: That’s good. I just love your optimism and spirit. I’m serious. I sound hokey. I know. It’s really awesome. Now that you’ve gotten the taste of the memoir book world and all that, are you going to write another book? What are you thinking? What’s your plan?
Kate: I’m afraid that I couldn’t do better than this, so I have a little fear of that. I don’t know if that’s common in writers. I love this. I don’t know if I could do it better. This is the first ten years of Cooper’s life. I think the next book would really be the next ten years, if that makes sense. My honest plan is to take the summer off. I have been working really hard for three years on the social media stuff. I want to enjoy my babies. I spent this last weekend with my dad, who recently had a stroke. He talked a lot about death. He’s like, “My life’s over,” and was saying these things. When he left, I was like, I have to enjoy every second. I felt a lot of pressure. I’m going to enjoy my babies this summer and relax.
Zibby: That sounds really nice.
Kate: I know. I haven’t done it in so long. I haven’t. My little guy is always like, “Mommy, look at my face,” because my head’s in my phone a lot. I’m always working. I don’t want to miss this. I’m going to just pause for a while.
Zibby: That’s wonderful. Do you have any advice for aspiring authors?
Kate: Write. That’s my recommendation to anyone. Writing can be the most therapeutic thing ever. You don’t have to share it. A lot of my stuff wasn’t even shared. I just wrote it down. It helped me so much to put it in my little universe. Definitely, write. Then the second thing is, your story matters. I say this all the time to autism moms. Your story matters. It’s so important to share it because you could help one person. Know that. It doesn’t have to be some profound thing. It will touch someone.
Zibby: I love that. Amazing. Kate, thank you. Thanks for coming on “Moms Don’t Have Time to Read Books.” Thank you for being such an inspiration. You say that you don’t know what you’re doing or what world you belong in, but I feel like you have found your world here in the writing universe. Keep it up.
Kate: Thank you. Thanks for having me.
Zibby: Thanks so much. Buh-bye.
Kate: Bye.
