Kate Swenson, FOREVER BOY: A Mother's Memoir of Autism and Finding Joy

2022-07-17 · 21:40 · Kate Swenson · Podcast Audio

[0:02]Hi, I'm Zivi Owens, the creator and host of the award-winning podcast that you're listening to right now.

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[0:53]Kate Swenson is the author of Forever Boy, a mother's memoir of autism and finding joy.

[1:03]Kate, the founder of Finding Cooper's Voice and Nonprofit, The More Than Project,

[1:08]is a mother to four kids, a wife, and a proud Minnesotan.

[1:12]She writes and creates videos regularly about her life as a mother and an autism advocate for Facebook,

[1:17]Instagram, and her website Finding Cooper's Voice.

[1:20]Her book, Forever Boy, a mother's memoir of autism and Finding Joy, is available now,

[1:25]and highlights the transformation that she went through after her son's diagnosis.

[1:29]Welcome, Kate. Thank you so much for coming on Mom's Don't Have Time to read books,

[1:33]discuss Forever Boy, a mother's memoir of autism and Finding Joy.

[1:37]Thanks for having me.

[1:39]It's my pleasure.

[1:40]We had just started talking about motherhood, and especially both of us being moms of four,

[1:46]and sleep issues, which plague most parents.

[1:49]I know in some ways, shape or form, and you're saying you're your youngest,

[1:53]two, 11 months is just not a sleeper.

[1:55]And I have a not a sleeper too, and she still doesn't really sleep.

[1:58]It's like they don't need it.

[2:00]And that's the part I don't understand.

[2:02]I want to understand why I'm a why person.

[2:05]And she's like, I'm good.

[2:07]I'm good.

[2:08]Then she sleeps in in the morning, and I have to get up at 6.30 with the other kids,

[2:12]and I'd just like resentful of her sweet baby head and bed.

[2:16]Maybe she's on a different time zone.

[2:19]Oh, yes, she is.

[2:20]Yes, the nights are for parting.

[2:22]Oh, my gosh.

[2:23]Well, I mean, at least she'll be really fun later.

[2:26]But I think sleep deprivation is just torture.

[2:30]I mean, everything changes in my life from what I eat.

[2:33]Like I crave carbs.

[2:34]I want you.

[2:35]It's like I hang over.

[2:37]I want, and I'm just not productive.

[2:38]I don't want to exercise.

[2:39]And it's hard to live in that state for a long time,

[2:43]because my oldest statistic sit in sleep for a lot of years.

[2:46]And I've just been so long.

[2:47]It's like, I'm done now.

[2:49]I have to say I am divorced and remarried.

[2:52]And that is the major perk is that every other weekend I can sleep.

[2:57]I feel like you need a weekend away to sleep.

[2:58]You might not need a divorce.

[3:01]But you might need, you might need regular recharging visits if there's

[3:06]anyway.

[3:07]It wasn't until I started sleeping again that I realized

[3:09]how completely sleep deprived I was.

[3:12]My husband and I have talked about getting an apartment.

[3:15]There's a beautiful apartment going up near a house.

[3:17]And be like, what if we rented one and just use it as like a sleep cave?

[3:21]I was like, you're on to something.

[3:23]Like that is a thing I think.

[3:24]Yeah.

[3:25]You could just call it an office.

[3:26]I don't know.

[3:27]We're working.

[3:28]Yeah.

[3:30]OK.

[3:31]Well, you wrote this beautiful memoir.

[3:33]I don't know when you did that in the midst of all this craziness,

[3:36]although I hate when people say that so anyway.

[3:38]But all to say, I'm very impressed that you also did that.

[3:41]I'm very impressed.

[3:42]And that's where you mentioned how detailed it was.

[3:44]Right.

[3:45]You remembered or wrote down or something just everything related

[3:49]to Cooper from his birth to just like all the details of the scores

[3:54]and what maybe this wasn't right and then comparing him when your next

[3:57]child is bored and all of it.

[4:00]Like all the stuff.

[4:01]How did you did you know all along you were going to write about this?

[4:04]Or did you keep a journal on how did this all happen?

[4:06]So I was a blogger back when blogging was super cool back when the WordPress platforms were the hit

[4:11]I started blogging about Cooper and I would just write daily. It's a really it really essentially was a journal because no one read it

[4:19]It was just me and it was raw and it was detailed and so I was able to go through his whole life

[4:26]Which was very emotional. I went through it in six months and you know wrote this whole book about him

[4:32]But I dug up a lot of feelings and I I dug them up, but I healed from them too

[4:37]So it was great that I did it that way

[4:40]Interesting

[4:41]Yeah, so then when you were writing you could go back to the blogs and pick the best pieces and put them in the book

[4:47]Yeah, and fill it and fill in the details

[4:50]But I will tell you when you you I am sure you know this when you write a book like obviously you're publisher wants new content and I was like

[4:57]Oh

[4:59]I wrote everything down, but I have had readers say to me many readers like I didn't know that about you

[5:04]I thought I knew everything so I did master that. Oh, that's good. Yeah

[5:09]So what's something that you feel like you included in the book that was not in the blog that people are surprised me

[5:14]So my husband and I were divorced and remarried to each other and I touched on that a little bit

[5:20]But out of like respect for our family. I didn't go into it in the blog that much

[5:24]Also aggression, which is a big thing that families of children with autism go through

[5:29]I don't talk about that or medications

[5:31]I'm pretty tight-lipped about that because I can't I in a blog you can't control a narrative like someone can stumble upon it and

[5:38]Read a paragraph and be mean and make judgments. We're in the book

[5:42]I could tell the whole story and how it's in there

[5:45]So I went into all those details. How do you feel about them all being out there now?

[5:49]Well, I had some funny things that my husband said to me because I do have a little bit about being on Tinder

[5:55]Where we were divorced and he came home and he was like Tinder, huh?

[5:59]Like just stuff like with the status like the one word just like Tinder, hmm, and I'm like what's gotta go?

[6:05]But I I shared everything and the feedback has been so great and

[6:10]Seriously a hundred percent positive so far. That's amazing. Yeah, wait. So tell listeners more about

[6:16]What leads a couple like you to get divorced and remarried?

[6:20]So my husband they were very happily married wanted babies right away had Cooper and

[6:25]All of our friends were in that age where everyone had babies at the same time and we watched them go back to living in the

[6:32]Sense that they were still doing camping or boating or whatever their hobbies were and our life

[6:38]Slowly turned off meaning it was doctors appointments and therapies and IPs and we couldn't go on the community

[6:44]We couldn't go to restaurants. We couldn't we have stories of camping and like needing Wi-Fi and Cooper screaming and the people asking us to leave and

[6:52]I mean just horrible stories and

[6:54]Eventually we couldn't do anything that we wanted to do

[6:57]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 and

[7:04]I just took on a lot of his care and

[7:08]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

[7:14]False by the way, but that's what I felt and I pushed my husband away and he

[7:19]He retreated willingly just because it was so hard

[7:22]So we spent a year and a half a part and I joke that he spent it in a boat and I spent it in

[7:28]The gym and drinking. I don't know what I was doing. I was doing the honest

[7:31]I was surviving and came back together and it's just we had two more kids. It's been it's been quite the love story

[7:38]That's amazing. Yeah, so what are you doing this time differently?

[7:42]Like how are you making sure that you don't slide back into that?

[7:45]Okay, so before kids that's really hard. I'm gonna be honest

[7:48]We do not have a lot of time for each other and

[7:50]There's just not one second in the day

[7:52]But what we do differently with Cooper and for any of that doesn't know when you have a child with a disability

[7:57]It's it's like endless amounts of paperwork and appointments. I mean more than you could even imagine

[8:02]I when I worked full-time

[8:03]I would say four hours of every day of my work week was doing things for his care

[8:09]Like with phone calls and emails and stuff my husband. I split it up

[8:13]Like we just each have our own things like he handles Cooper's medical billing

[8:18]I handle their computer course decorating like we just like split it up

[8:22]And it saved us because he understood the weight that I was carrying alone and we just we split it into wow

[8:30]But how did you get past when you break up with someone? Well, it's not just breaking up you got divorced

[8:35]But yeah, I just feel like once you've made that decision you carry a lot still like you I don't know

[8:41]It's like what does that term? Well, I don't know like when you when you make a decision

[8:46]And then you find all this evidence to support it

[8:48]You know and you have to like double down if you're not sure because like that's what you chose and so

[8:53]Sometimes it can be hard to then take all that

[8:56]Strip all that away and get back to basics. This is the worst phrased question of my life

[9:01]But how did you do that?

[9:03]So here's the interesting thing we really didn't have any other problems

[9:07]besides the way we were

[9:09]Grieving and accepting autism that was really the whole in our marriage. Not Cooper. Go for it was perfect

[9:15]It was just the way we were carrying the weight. I was super emotional. He was super laid back

[9:20]I was like get on the autism ride with me and he's like I'm on it

[9:24]But you know that was really our only struggle so it's a really it's probably my favorite part of the book

[9:29]We came together for lunch after a year and a half and I said to him I failed I failed I failed

[9:35]I devoted my whole my whole life everything about me

[9:38]I went all in to help Cooper learn to talk and

[9:43]live in this world in a world that accepts him's I went into all the details

[9:46]And I was like I wanted to tell you I failed and if you hate me hate me and he stood up and hugged me and he was like

[9:52]Cooper is everything because of you because he goes from right now and he finally acknowledged everything that I had sacrificed and from

[9:59]We like went

[10:00]Like he like moved in like two days later. I'm not lying. Yeah, it just

[10:04]was that like also the five-lent love languages really helped us too.

[10:11]Yeah, yes, that book is great. I love those tips. Good tips.

[10:16]How is Cooper now? Wonderful. He's my easiest. Really? I'm joking, but all four of my kids

[10:24]are uniquely challenging in their own ways. And Cooper, so he's 11. He's a fifth grader.

[10:29]He has some words. He communicates amazingly in a multitude of different ways. He has

[10:35]horseback riding and miracle league baseball. He loves to be home. So as long as he's home and

[10:42]he's not, you know, being challenged in any way, he's just the happiest person you will ever meet.

[10:46]He wakes up joyful every single day. And we like that life for him. We've built a life around him.

[10:53]And we still can't really go out in the community easily. So like there's no restaurants,

[10:58]no airplanes, parks or hard, no grocery stores, that sort of thing. And that's,

[11:02]for ever, I think, be a challenge until we kind of figure it out. But he, I will tell you,

[11:08]he's way easier than my emotional nine-year-old. I will tell you that.

[11:13]Wow. I mean, different kids, different ages bring up all these unique challenges, right?

[11:18]But it's having to deal with all of them at once and you being the one carrying that burden,

[11:23]at least, you know, shared with your husband, but still.

[11:26]I mean, I would say Cooper, the way I describe autism, it would describe families of four kids

[11:31]is moments of chaos, right? Like you're going along on this case. But then Cooper, so what he does

[11:38]is he can, I would say he turns the dial up and it gets like 110 degrees real hot, like real hot

[11:43]real fast. And then that's when we can, we can like see it coming like things imploding and

[11:47]but we're able to pinpoint it now. And we've settled into autism,

[11:51]we're learning right alongside him and that's all you can hope for.

[11:55]Do you ever get any outside help so you can go to the gym or get some time away to regain your sanity?

[12:05]So that's the hardest part and it always has been, I think, always will be, is getting good care.

[12:09]Cooper is essentially nonverbal, so we don't trust really anyone with him because

[12:13]we do, but we don't. He's so vulnerable and so can be so challenging. So like, it's hard to use

[12:19]grandmas now because grandmas are getting older and Cooper's getting bigger and stronger.

[12:25]We have a few college girls that are coming home on May 15th. Oops, I'm a countdown. I'm so excited

[12:31]about that. But I think that will be a lifelong challenge. It's getting good at help.

[12:37]Man, you're amazing. No, I'm serious. Look, because you're so positive, you're literally like

[12:42]bouncing up and down with a big smile on your face talking about these really challenging things that

[12:48]could sink ships, you know? Well, and the thing is, so I've actually had people online that say,

[12:54]you know, you're, you're glancing over severe autism or you're not talking about the hard parts of

[12:58]severe autism. And I talked about the hard parts for a long time. I really did really honestly and

[13:04]openly thinking that no one was ever going to care or say, here, what I had to say,

[13:08]and I went viral in a lot of different ways. And that's terrifying. And I realized that if I

[13:15]wanted to have this discussion about severe autism, I needed to do it in a book or I needed to do

[13:20]it in smaller groups where I could make sure my message was being heard because when you just like

[13:25]blast it on the internet, it reaches the depths and it's not pretty. Nope. Interesting. Yeah. Okay.

[13:34]You had this really beautiful passage, which I totally related to, and I'm hoping I can find it.

[13:41]You said, I am a confident woman. I know my role is a wife, a daughter, a friend, and an employee,

[13:47]but as a mother, I have found myself in a place of uncertainty where I can't figure out who I am or

[13:52]what my role is. I know many if not all mothers feel this way at some point, the pressure sometimes

[13:57]suffocating. We are our own biggest critics. I don't feel confident in how to help my son,

[14:02]yet I'm expected to. The decisions to help him felt monumental. Well, I felt like I was playing a

[14:07]game with ever-changing rules. And on top of that, I am in between two entirely different worlds,

[14:12]and I don't feel whole in either of them anymore, along for them to overlap. But as the boys age,

[14:17]they rarely do. So I think of this, I always do this visual where there's the special need for

[14:23]all that I'm holding onto Cooper. And he's like pulling me. And then Sawyer, his younger brother

[14:29]by two years, is in the world of baseball and hockey and play dates and birthday parties. And he's

[14:34]playing, he needs me over there. He needs me. And I often feel more comfortable in the special

[14:39]needs world, like that hat fits better because it's just easier to talk to other people and be

[14:47]in that world. I still don't know where I fit in. I really truly don't. I just try.

[14:54]Do you have a best friend or somebody that you confide in regularly? Or I'm looking, I keep asking

[15:03]because I'm like, you must have more outlets. How could you keep all this in?

[15:09]So three years ago, I created a supported group on Facebook where I brought in a couple of thousand

[15:15]invited them special needs moms. And I was like, there have to be moms out there that think this

[15:20]is beautiful, but also say it's really hard and are scared for the future. And are not angry all

[15:25]the time because it can be a confusing world in this motherhood stuff, right? Like you got to find

[15:30]who your people are, who you align with. And that changed my life. And I have so many friends now

[15:37]where we can text each other and say, oh, I give up or, you know, whatever it may be, or, you know,

[15:42]Cooper got up at 3 a.m. this morning and asked me to buy a train movie online at 3 15. And we can

[15:48]talk about these things. And that's changed my life. And did you buy the movie? Yes.

[16:03]So tell me a little more about the book itself. When did you decide the things when viral,

[16:09]is that what like, how did this become a book? Like when did this become a book? What was the

[16:14]the process like of just like hammering it out and getting it in and all of that?

[16:19]Yeah. It's a really cute story. So I was a writing blogger for a long time. And then when I started

[16:25]Facebook, I would do videos just literally talk into my phone and talk about different parts

[16:30]of autism. And that's when I had a lot of things go really viral. One to quit numerous times and

[16:35]kept going. And I picked up a follower from New York who was just absolutely wonderful. And she

[16:41]every live video, she'd be like, you should write a book. You should write a book. And I was like,

[16:44]you're a two. I don't know. I don't have time. You know, and I don't know you ended up connecting

[16:51]and she connected with her neighbor who's an agent. I flew it to New York, had so much fun,

[16:56]wrote a proposal, submitted it, and her girl books, which is part of HarperCollins bought the book.

[17:02]And I signed on a Friday or whatever day it was. And on Sunday, the world shut down for COVID.

[17:07]So legit shut down. We got the email from the schools. And I was like, but we still have

[17:11]Cooper therapy shut down. I mean, we're talking therapy is year round. It never ends. And I was blown

[17:18]away, daycare ended. So I had six months to write 60,000 words with three kids. And then I thought

[17:22]I was pregnant. Surprise. It's a blessing. It was really hard. And I questioned like my ability to

[17:30]be a writer. I didn't know if I was good enough. I didn't know how different writing a book was from

[17:35]blogging. But I think it's perfect. I'm so proud of it. It's exactly what I wanted. But it was hard.

[17:43]Wow. Yeah. So how did how did you manage everything during the pandemic?

[17:47]So I wrote at night, but my husband, I have these funny stories that we tell now about fights where

[17:51]he's like, I'm like, I need to write, you know, 10,000 words. And he's like, right now. And I'm like,

[17:55]I don't feel inspired. Like, because he's an insurance agent. And I'm like, you can run your quotes

[18:01]anywhere. I'm like, I have you have to be in the right minds to write it. Not for me, it wasn't as

[18:06]simple as that. So I wrote a lot at night. And the heart part was just keeping the kids out of the

[18:11]office. That was hard. But now I look back and it feels like a blip in time. I mean, I'm like, I did it

[18:18]somehow. And what about Cooper? So did he get any services during that time? Or was everything

[18:24]everything stopped for him as well? So it was so it was twofold. It was very, very hard that all

[18:30]of his services ended. And they did. I'm going to just say for like four months because the kids

[18:36]especially, it's got to go back before the other kids and our school because they don't respond to

[18:40]Zooms or virtual or anything like all of this like all these kids in our neighborhood. And he had

[18:47]huge gains. So it was kind of a positive thing. Well, that's good. Yeah. Wow. I just

[18:54]love your optimism and spirit. I'm serious. I sound hokey. I know. But it's really awesome.

[19:01]It's really awesome. So now that you've gotten the taste of the memoir book world and all that,

[19:06]are you going to write another book? Or what are you thinking? What's your plan?

[19:12]Well, I just kind of afraid that I could do better than this. So I have a little fear of that.

[19:17]I don't know if that's common in writers. Like I'm like, I don't know if I could.

[19:20]Yeah, I love this. I don't know if I could do it better. I also, this is the first 10 years

[19:25]of Cooper's life. So it's like, I think the next book would really be the next 10 years.

[19:32]I think I'm my honest plan is to take the summer off. I've been working really hard for

[19:37]three years on this social media stuff. And I want to enjoy my babies. I spent my weekend this

[19:43]last weekend with my dad who recently had a stroke. And he talked a lot about like death and like,

[19:48]you know, he's like, you know, he's like my life's over and I was saying these things.

[19:52]And when he laughed, I was like, oh, I have to enjoy every second. I felt a lot of pressure.

[19:58]So I'm going to enjoy my babies.

[20:00]summer and relax.

[20:02]It sounds really nice.

[20:03]I know I haven't done it in so long.

[20:04]I haven't.

[20:05]My little guy is always like,

[20:06]Mom, you look at my face

[20:07]because my head's in my phone a lot.

[20:09]I'm always working and I don't want to miss this.

[20:11]So I'm gonna just pause for a while.

[20:14]That's wonderful.

[20:15]Do you have any advice for aspiring authors?

[20:18]Well, right.

[20:19]I mean, that's my recommendation to anyone.

[20:22]Writing I think can be the most therapeutic thing ever.

[20:25]You don't have to share it.

[20:26]Like a lot of my stuff wasn't even shared.

[20:28]I just wrote it down.

[20:29]It helped me so much to put it in my little universe.

[20:33]So definitely right.

[20:34]And then the second thing is your story matters.

[20:38]I say this all the time to autism moms.

[20:41]Your story matters.

[20:42]It's so important to share it

[20:45]because you could help one person.

[20:47]So know that.

[20:48]It doesn't have to be some profound thing.

[20:51]It will touch someone.

[20:53]I love that.

[20:54]Amazing.

[20:55]Kate, thank you.

[20:56]Thank you for coming on mom.

[20:57]So it's time to read books.

[20:58]Thank you for being such an inspiration.

[21:00]You say that you don't know what you're doing

[21:02]or what world you're belonging.

[21:03]But I feel like you have found your world here

[21:05]in the writing universe.

[21:06]So keep it up.

[21:07]Thank you.

[21:08]Thanks for having me.

[21:08]OK, thanks so much.

[21:10]Bye.

[21:11]Bye.

[21:12]Thanks for listening to this episode of moms.

[21:14]Don't have time to read books.

[21:16]Don't forget to follow me on Instagram, at Zebioans

[21:19]and at moms don't have time to read books.

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[21:28]Thanks so much to Steve and Ryan at Textures Sound

[21:31]for the Sound Editing.

[21:32]And thank you to Morning Moon Productions

[21:34]for providing this fantastic intro and outro music.