Episode 249 — It’s Going To Be OK
Guest: Kate Swenson • Date: March 27, 2025
Episode Overview
Kate Swenson, creator of Finding Cooper’s Voice, shares insights from her new book Autism Out Loud, co-written with two fellow autism moms. Their powerful message? You’re not alone—there’s strength in community and the stories we share. The secret this week is… It’s Going to Be OK
About Kate Swenson
Kate Swenson is the creator of the blog and Facebook pageFinding Cooper’s Voice. Her debutForever Boywas a National Bestseller. She speaks regularly about autism, parenting, and motherhood, and is a contributor toTODAY Parents,The TODAY Show, and theLove What Mattersblog. 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 family.
www.facebook.com/findingcoopersvoice
www.instagram.com/findingcoopersvoice
You’ll Discover
The Shift That Makes Everything Better (4:58)
The Backstory ofFinding Cooper’s Voice(17:09)
The Importance of Finding YOUR Tribe (24:51)
WhyThe MiddleIs The Place To Be (31:57)
Referenced in This Episode
Full Transcript
Kate Swenson [00:00:00]:
When he was diagnosed, I prayed for a crystal ball. I just wanted someone to tell me that it was going to be okay. I remember I would lay in bed and on my hardest moments and I would think, I just need like a 30 second clip to show us that. 10, 15, 20. And that's probably as far as I could go at that point. But just show us. And now that we're. We're living it, we're in the middle, we are okay, and we're.
Kate Swenson [00:00:26]:
It's still hard. I will never downplay that we have a lot of challenges, but Cooper's thriving. He's doing things every day that amaze me. He's happy, he's loving, and we're okay.
Cass Arcuri [00:00:39]:
Want to truly be the best parent you can be and help your child thrive after their autism diagnosis? This podcast is for all in parents like you who know more is possible for your child.
Len Arcuri [00:00:50]:
With each episode, we reveal a secret that empowers you to be the parent your child needs now, saving you time, energy, and money and helping you focus on what truly matters most. Your child.
Cass Arcuri [00:01:01]:
I'm Cass.
Len Arcuri [00:01:02]:
And I'm Len.
Cass Arcuri [00:01:03]:
Welcome to Autism Parenting Secrets.
Len Arcuri [00:01:17]:
Hello and welcome to Autism Parenting Secrets. It's Len, and if you're on Facebook or Instagram, you've probably seen my guest today. Kate Swenson is the creator of Finding Cooper's Voice with over a million followers, and she's the author of the national bestseller Forever Boy. Her latest book, Autism Out, Life for the Child on the Spectrum From Diagnosis to Young Adulthood, just came out in April 2025. She co wrote it with Carrie Cariello and Adrienne Wood, three moms with different backgrounds, all navigating life with a child on the spectrum. Autism Out Loud is a real, honest and straight from the heart book. It shares the ups, the downs, and the everyday wins of raising a child on the spectrum, plus the hard stuff, like how a diagnosis can affect a marriage and family life. So at its core, this book is about the power of shared experience and why community matters.
Len Arcuri [00:02:17]:
The secret this week is it's going to be okay. Welcome, Kate.
Kate Swenson [00:02:22]:
Hi. Thanks for having me.
Len Arcuri [00:02:24]:
Absolutely. My pleasure. And I love the title of this episode. It's going to be okay. I so wanted to hear that early on. And it's not just happy talk, right? It really is going to be okay. You want to expand on that?
Kate Swenson [00:02:37]:
Yeah. So my son Cooper's 14 and he still has the same diagnosis we got 11 years ago, severe nonverbal autism. Few more things added in. Anxiety, adhd, ocd, all Those fun little ADD ins, you know? And when he was diagnosed, I prayed for a crystal ball. I just wanted someone to tell me that it was gonna be okay. I remember I would lay in bed on my hardest moments and I would think, I just need like a 30 second clip to show us that 10, 15, 20. And that's probably as far as I could go at that point. But just show us.
Kate Swenson [00:03:13]:
And now that we're living it, we're in the middle, we are okay. And it's still hard. I will never downplay that we have a lot of challenges, but Cooper's thriving. He's doing things every day that amaze me. He's happy, he's loving, and we're okay.
Len Arcuri [00:03:31]:
Fantastic. And I know that's true because I felt in my own way the same for my son. But a lot of things need to shift in order for a parent to kind of get in that position, right? Including maybe the outcome you're going after. Including the fact that even though the journey is hard, it doesn't need to be as hard as at least I know the journey I was creating for myself along with my wife Cass. So in terms of you looking back, and I know that's a lot of what's in the book, you can kind of whisper to yourself, back then when everything was starting, was there any way that you were kind of responding as a mom that you just wish you could have a do over in terms of like a single thing to shift or maybe even if it's just in terms of whether it's a mindset or a belief you are holding, is there anything that really jumps out at you as being the biggest thing you wish you could change?
Kate Swenson [00:04:29]:
I think for so long, and I hope it's different now. I mean, we've been diagnosed for so long now. And I pray, I keep saying this, I pray it's different now. But back then, autism was presented to us as this sad, dark thing to overcome. It really, truly was. I remember talking to psychologists and doctors and teachers and therapists, and they'd be like, you don't want this. You want to be this. You want to.
Kate Swenson [00:04:54]:
Let's do everything we can to change him to this. And it felt like I was trying to fit this square boy into this circle whole. Like, how do I. And what I wish someone could have told me is, that's never going to happen. Cooper is exactly who Cooper's supposed to be. Yes, we can help him with self care and social norms and safety and all those things, Right? Communication. But Cooper is Cooper and so once I realized that, and it was a big shift for me, and I started meeting him where he was at and celebrating who he was and honestly stopped trying to change him. It's vulnerable for me to say that because I think that makes people feel squeegee.
Kate Swenson [00:05:33]:
But I. I think we were. We were trying to change him. Once we shifted life, it's like we let out this collective breath. I'm not sure if you felt that we were like, okay, we're not that family. We're this family. You know, we're gonna. And we're gonna find happiness in our own way.
Kate Swenson [00:05:51]:
Everything got better. It truly did. Fast.
Len Arcuri [00:05:55]:
Yeah. I fully appreciate what you just said. I couldn't agree with it more. And there was no question I was in the I'm going to change my kid mode immediately. I was being told to do that 100% and unapologetically focused with that objective. And so I think what you shared in there, there was a key word, I think, that you said, in terms of thriving. Right. It really comes down to helping your child become the best version of themself.
Len Arcuri [00:06:27]:
They can be unapologetically wanting more for your child, but not having some outcome of them to be fixed or to be normal or to be even the vision of what you thought your child was going to be like, it's kind of the letting go of all those outcomes that don't seem horrible in and of themselves, but they just don't put you on a path for what you truly want for your child, which is for them to be the best version of themselves, for them to feel love and acceptance from you. It's easy putting your ladder on a wall. That just ultimately creates a lot more friction for everybody in the family.
Kate Swenson [00:07:08]:
And I'm not sure exactly if you did this. I was like, I'll be happy when. And I was so goal oriented. I was such. I come from a background. If you know me personally, like, I'm a hard worker, so if I want to run a marathon, I'm going to train. If I want a better job, I'm going to work harder. I mean, I could just.
Kate Swenson [00:07:25]:
That's. I. Every. Every problem has a solution. I just have to do more. Autism was the first thing in my life that humbled me. I couldn't. I couldn't necessarily make it better or fix it or change it.
Kate Swenson [00:07:39]:
And so I. I lived in this place of like, I'll be happy when. When he talks, when he's potty trained, when we have a, you know, when he's Mainstreamed. I could just go down the list. And I wish someone would have told me, you know, you need to enjoy the now you're going to blink, and he's going to be 15. You're going to blink. And it's like, now I'm happy that he can communicate. I'm happy that we found a program in school that he likes.
Kate Swenson [00:08:05]:
Like, see the shift. It's like, you have this one idea, but it's actually this thing that's better. We have to shift.
Len Arcuri [00:08:13]:
Without a doubt. As you're talking, I'm going back in my mind to the way that came abundantly clear for me, is I realized I was in love with the version of my son that I wanted him to be and therefore was not loving him and accepting him fully as he was now. So he had to be fixed in order for him to be okay. And again, that made a lot of sense to me at the time. But I look back now saying, okay, well, that. That was just setting myself up for such disappointment, frustration. And to your point, I could instead have chosen and did choose. At a certain point, I finally figured this out because Cass and I had great mentors and people who helped us, but that I could accept him as he was now, be connected and to be loving now.
Len Arcuri [00:09:07]:
And it really boiled down to me is, was I really willing to have the courage to give him unconditional love, or was I going to withhold some of that because I didn't like what I was seeing? And as soon as I saw that that's kind of what I was doing, then it was much easier to become present in the current moment, to take it all in the ups and downs and just know that this journey day to day, is what it's all about. It's not about some future outcome.
Kate Swenson [00:09:37]:
Yeah. And, you know, for any parent that's listening that maybe just heard the word autism out loud for the first time, I always say, you know, as you were talking, it's like, I wish I could go back and hug you. It's like, be gentle with yourself. Like, what you were feeling. I think it's just a normal part of. I mean, I remember walking Cooper into the appointment to be diagnosed when he was three and a half and he was classic autism. I mean, there was no question that we were going to get the diagnosis. And but when the.
Kate Swenson [00:10:04]:
When the doctor, you know, said it out loud, I was almost like, oh, no, you keep that. Like, she was, like, handing it to us. Like, we had to, like, take this thing on. And so it's so normal to, you know, expect your child to talk and play sports and have friends and graduate, drive a car. I mean, so I just, I always just want parents to be gentle with themselves. Like because there's the part that we're talking about, but then it's the guilt for the feelings after. And I mean, I struggled with the guilt for a long time. And you shouldn't because you're human and you had expectations, you thought this was going to happen.
Kate Swenson [00:10:39]:
It didn't.
Len Arcuri [00:10:41]:
Right, right, normal. But that guilt is real. And you said at the outset that you're a hard worker, you're a pretty motivated person. Right. Goal orientated. If you're like anything like me, and I'm sure you are part of my toolbox in terms of me being the best version of myself, are tools that basically beat myself up to be better. Like, so that's where guilt, shame, whatever the case may be, or just kind of some of that negative self talk I felt was useful for me to be a better parent, for me to be a better husband. And it took a while for me to figure out that that's not needed.
Len Arcuri [00:11:20]:
I don't need to beat myself up because I could see if I stayed in that space, I would just beat myself into the ground, which of course we know is burnout, crashing and burning. And so many parents, because they're not really equipped, because they don't know what they don't know at the outset, they're just unwittingly on that path toward burnout, which all the things that I know I was doing that was contributing to that, they were all within my control to do something about, I'll tell you.
Kate Swenson [00:11:52]:
So I have started hosting retreats, I host two a year for. Right now we're just focused on female caregivers for lots of reasons. We're not excluding dads, but we have a hard time getting dads to come out and talk about their feelings. That is the reason why. But. So at one of my first retreats, I was standing at the entryway and this woman walked in and she had this kind of hoodie, kind of up here and this low hat. I could hardly even see her eyes. And she walked up to me and she's like, can I talk to you? And I was like, yeah.
Kate Swenson [00:12:21]:
And she goes, I. I blame myself for causing my son's autism. And she had like, she, like she had. I could tell it had been rehearsed, right? Like she had this whole list of things that she was going to say to me. And as she was Talking. I just assumed that her son was like three or four, because that's the guilt. You know, when they're younger. Her son was 18 and I looked at her and I was like, you have to set this down.
Kate Swenson [00:12:43]:
Like, I have goosebumps right now. Like, you have to set this guilt down. And she just burst into tears and she sobbed and she's like, I don't know how. And I was like, you gotta set it down. You're doing a great job. I mean, I just knew she was like, you just the love for her child radiated out of her. But we're so hard on ourselves as parents. And I'm like, you gotta set it down.
Len Arcuri [00:13:04]:
No, I have goosebumps as you're saying that. And you know, as I've dove into this and trying to understand why us parents operate the way we do. And in her case, to some extent she's still feeling like that guilt is useful in some way that it might help her. But that's the big secret is that no, you can forgive yourself and let that go. And then it just frees up so much energy that's being wasted that you can put towards being with your child in presence, you can put toward your self care without the guilt or feeling like you're being selfish. And so it truly is a gift you can give yourself. But sometimes all a parent needs is someone like you who not gives them permission, but helps them see that they can give themselves permission to let it go.
Kate Swenson [00:13:53]:
Yeah, exactly. Yep. I think that I try to be. I'm sure you're doing this too. I try to be the friend, the person that I needed in the beginning. And I always say, if there would have been this stuff now. I know, I mean, your son's 18, but it was only 14 years ago. If there would have been podcasts and blogs and groups and retreats and books like this, I don't think I'd be here.
Kate Swenson [00:14:18]:
Like, I think I could have. I think I could have met autism in a different space, in a different way. But it was so quiet and shamed and we don't talk about it. And I think it's different now. And so by us sharing, it's like we're giving people permission to feel and heal and all that. It's my thought on it.
Len Arcuri [00:14:39]:
I agree, I agree. I think it's hard for any person to strike out on their own and do something like very different from what other people are doing and to have the courage to really stand out like that. So the idea of now you're Right now, there's books, there's podcasts. There's so many resources that a parent has that they didn't have before that they can then that can help them take those steps, those more courageous steps about what's going to be right for their child. And that's why, as everyone knows, there's no one size fits all. It's basically for you to try to figure out for your unique child what is in their way and what can you do to help them, because there's always something you can do. But, you know, but early on, I agree, a lot of the people who are surrounding us weren't really helping empower us to make good decisions. It was more about conforming to whatever that prevailing view was at the time.
Len Arcuri [00:15:36]:
So we had a one particular doctor who we were living in New York City at the time, the go to Dr. Who was the one to go see to get the evaluation from and basically put us on a track. His recommendation was, you got to hit it and you got to hit it hard. You got to hit it with behavioral therapy. You got to force our son to conform. And again, I could see where that may have been well intended, but we learned that the way our son operated, we had to choose a very different approach. And so again, it's not good or bad. It's like, what's a fit for your child, what's going to resonate the most with them.
Len Arcuri [00:16:16]:
And a lot of times it's just a parent shifting how they're operating that can make such a huge difference. And for us to get out of fight or flight ourselves, which most parents are in when they get that diagnosis.
Kate Swenson [00:16:28]:
Absolutely. Yeah.
Len Arcuri [00:16:30]:
Great. So with your book, I know you don't have a lack of having an outlet of getting your message out there, which you do extremely well on social media. Probably no one better. But with respect to the book, why the book and that particular way of reaching parents and the idea of collaborating with different moms, can you tell me a little bit more about your thinking with how that you saw as being a real powerful way to get your message out there for people?
Kate Swenson [00:16:56]:
Yeah. So my first book, I have it sitting right here. My first book. Look at Cooper. He was so little. He was 18 months old. His little feet a little squishy. I never thought I'd write a book.
Kate Swenson [00:17:09]:
It wasn't in my plan. So I started blogging on an old WordPress site before Facebook page before that. And it was. We weren't saying autism yet, but we were saying speech delay and developmental delay. And I Was holding on to those two things so tightly. And then our story kind of weaved a little bit. We thought maybe he was deaf, which I hear from a lot of parents that they go down that path and so kind of took these different twists and turns and I just poured it out into this WordPress site and it was raw and it was ugly. I mean it wasn't good writing.
Kate Swenson [00:17:43]:
It was just, I'm scared. All my friends, kids are typical. Mine isn't doing what they're doing. And I. And again, the pressure on our marriage. I wrote a lot about my husband and I both had to work full time. That's. We were a two income family.
Kate Swenson [00:17:57]:
And how do we do this when daycare won't take them? How do we do this when we're doing therapies? I mean all the stresses that these parents are feeling, we went through too. And as time went on, I did start Facebook because I just wanted to find one other parent who had a non speaking child. So after the diagnosis, I just wanted one person. I was so lonely. Started sharing, had lots of things go viral, which is good and bad. I think I was. And I'll tell you, the first time that I found out saying autism is hard was a bad thing, it shocked me. I didn't know that I shouldn't say this is hard.
Kate Swenson [00:18:36]:
I had no idea.
Len Arcuri [00:18:37]:
I think whatever you say, people are going to judge it one way or another. Right. But that particular message, you got a lot of backlash.
Kate Swenson [00:18:43]:
Yeah. And I didn't know that what I was saying could be controversial because, you know, we can say newborns are hard and toddlers are hard and teenagers are hard, but I couldn't say, or little girls or whatever, you know, wild boys. I couldn't say that autism was hard. So that, so what it did was it brought a lot of wonderful people into my life and a lot of people that didn't like me into my life. And I, I sort of, you know, wavered on social media for a long time. Like what do I want my purpose to be? And then someone approached me and told me that I should write a book. And what intrigued me about it was when you see something on social media, you're just getting a snap snippet, you know, you're just like popping into someone's story for 30 seconds and leaving. With my book, I was able to talk from start to finish.
Kate Swenson [00:19:28]:
So it was birthed to, I would say 10. And I was able to cover diagnosis and grief and fear and anger and marriage and siblings and all of it. And had no idea if anyone would read it and they did. It's done really well. It's resonated with so many people. And then my two dear friends, Carrie and Adrian, we just decided to do this again. And we're like, would anyone want to read it? It's the story of three boys. Carrie's son Jack is 20, he's in a facilitated college program.
Kate Swenson [00:20:01]:
Amos or Adrian son Amos is 11 and he has autism and a genetic disorder. And then Cooper has severe autism. He's non speaking. But you know, the reason that we ultimately decided on was, and I'm not sure if you did this, but when Cooper was diagnosed, I went to Barnes and Noble and I stood in the book section and back then there was no autism. It was parenting. It was this big and it was. There was a book on down syndrome. That's what there was.
Kate Swenson [00:20:30]:
And I grabbed it and I think if I would have had a book like this, then it would have been so different. So, you know, our only purpose is to help parents. We just want to give them a soft place to land, Just show them it's going to be okay, like we're okay.
Len Arcuri [00:20:48]:
And that's a super powerful message. Which actually brings me to a concept that I know I rejected early on and only recently have kind of embraced much more fully. And that's the idea of community, because. And your book's all about there's power in these shared stories. But I know in my own mind, you know, as I was trying to be the best dad for my son Ry, I really didn't want to engage with other parents because I didn't want to hear their stories because whether they were quote unquote better or worse or more challenging or not, I really kind of just wanted to stay in isolation, really, because I'm like a project guy too. I like to improve things. So I saw this as a huge project where I thought I could figure this out with my wife Cass, but to figure this out, and I focused much more on my son and didn't see the benefit of being with other parents, learning from them and partnering. I now know how important community is, and that's a big part of even this podcast, is to have a forum to get these messages out.
Len Arcuri [00:21:55]:
So as you're looking back, I know you feel community is extremely important, perhaps even the most important. Can you expand on your learnings with respect to community and what parents can better understand?
Kate Swenson [00:22:08]:
Yeah, I will say single handedly, everything changed for me when I found a community. But big but it was incredibly hard to Find, I think, the autism community. I'll just say it can be really scary. I think there's little pockets of different ways of thinking, and if you don't think exactly like them, then you're, you know, you're kind of pushed out of it. And I never. And I just talked about this this morning today. I don't know, always where I fit in in the autism community, where I. I don't think it's a superpower, but I don't think it's a tragedy.
Kate Swenson [00:22:43]:
I think I, like, I'm in this middle ground, and I notice I'll, like, get to one side, and they're like, it's a gift. And I'm like, I gotta go. I'm just gonna back out here. And then, you know, so I don't always know where I fit in. And I'll tell you the first. This is a true story. The first support group that I ever went to, Cooper, was six years old. And it was in person.
Kate Swenson [00:23:05]:
And it. I mean, it took all my bravery to go. I was scared. I also. I didn't want to have the most severe kid, which I always feel like I do. I always, like, we stand out. I can embrace that more now. But then it was hard.
Kate Swenson [00:23:18]:
And I also did want to hear from moms of older kids that were gonna tell me what I should be doing. I mean, I was angry, so I gotta admit it. Like, I was not my best self. But I went and I went to this support group meeting at the high school, and it was a bunch of angry people, and they were mad about causes of autism and therapies of autism. And when I went home, I just cried, and I thought I put myself out there, and I failed. I'm not doing that again. And so I isolated for a long time, and then I decided to just build it. And so I have poured myself into building a community in Minnesota.
Kate Swenson [00:24:00]:
And I'll tell you, people come and go, but the ones that want others to lean on stick around. And so it's been worth the effort. It's changed my whole life. But it took me 14 years to get here. Long years. Yeah.
Len Arcuri [00:24:17]:
And you had to create it.
Kate Swenson [00:24:19]:
I had to create it in person and online.
Len Arcuri [00:24:22]:
And I agree with you. I mean, my isolation that I was choosing was informed because most of the parent support groups, especially at the time, you know, whether maybe there were a few on Facebook or even local support groups. Yeah, There's a lot of so much judgment. So many fiefdoms were people believe X, Y, and Z and not really tolerant of different views. And frankly, a lot of parent support groups that I saw are a bunch of parents getting together complaining. And I was like, well, I can complain on my own. I don't need to complain to someone else. Not that complaining is a good use of your time anyway.
Len Arcuri [00:25:01]:
But that's where I looked at community. I'm like, yeah, this journey is so unique. I'm going to just stay in isolation. But I wish I didn't because I could have found more of my community. I could have been. I was just so focused on. Let me just focus on myself and my family and my son. And down the road I can engage and pay it forward and help other families from our lessons learned like you've done.
Len Arcuri [00:25:25]:
And that's what this podcast is. And the coaching I do. But otherwise I couldn't do it back then because I was just so focused on my own world. And again, just the concept of community seemed like a nice to have. Whereas now I'm like, oh no, that would have been really essential to put in place. And that could have only helped me navigate in a better way than I did.
Kate Swenson [00:25:48]:
Just even so, I'll tell you, I have a very wonderful group of Minnesota moms and we do an event. We have a dinner on Saturday. We're gonna, you know, whoever can come can come. We all have kids with disabilities. I try to do an in person event for families because my son Cooper can't go to the typical sensory friendly event, you know, at Chuck e. Cheese from 7am on a Sunday. Like, he just, just still can't do that. So I've tried to create some of these events that, that he can do, but the thing that, that's the best is you don't have to apologize.
Kate Swenson [00:26:18]:
So, you know, I have stories galore that are hilarious, but one of the first events I had, you know those big indoor play parks we have in Minnesota because it's cold here half the year, but it's like a big park inside a, you know, a gym or whatever. And I was talking to families and engaging with them, and Cooper was at the top and all of a sudden his shirt came down and, and then his shorts came down. And I, like looked at my husband from across the room and we're like, it's go time. You know, like one of us has got to get up there through the tunnels and the ladders, you know, before the underwear come down. But you just. I've never had to apologize. You know, they, they, they're not surprised by autism. They're.
Kate Swenson [00:26:57]:
They're living the same life. And the stories, like, you will laugh. You will laugh at our, you know, Our. Our antics and our kids and our. All the things. And that's what's changed me is that I don't have to explain myself and I don't have to apologize. I can just be. We can just be ourselves out loud.
Len Arcuri [00:27:16]:
Yeah. And that's not to be underestimated. Right. Because if you're walking on eggshells and constantly worried, again, how in the moment can you really be if that's what you're focused on? So that tribe can be, again, very nurturing if it's the right one.
Kate Swenson [00:27:33]:
Yeah. And I just keep looking, like whether it's my group or a local group or build it yourself, but that if I pour my energy into a different place in the early years, it'd be finding people. And it's hard. So I'm not saying it's easy, but that's where I would have poured more energy if I could go back and do it again.
Len Arcuri [00:27:50]:
Great. Yeah. No, that sounds. That. That sounds so helpful. And back when our journey started or your journey started, that was pretty high degree of difficulty. But now online communities, I mean, it's amazing now how you can connect with people who have. Who share your values or your experience.
Len Arcuri [00:28:10]:
So if nothing else, finding your tribe now is much easier.
Kate Swenson [00:28:15]:
I think so. Yeah. The other thing that I'll say is the best knowledge I've gotten on this journey is from other parents who are usually typically ahead of me on the journey. It's not. And this is no offense to. It's not doctors or therapists or teachers who are all wonderful in their own sense, but the people living it that are like, did you know you can get free diapers after the age of four if your kid's on Medicaid in Minnesota? Or do you know what this amazing outdoor therapy called Rainbow Trees that's changed my kid's life when they come as suggestions. Because I feel like at the times that I've been in crisis and there's been many. I've been a caregiver in crisis numerous times.
Kate Swenson [00:28:53]:
I'm very open about that. With Cooper, I wasn't taking in information, so I wasn't helping myself. Like you're saying, I wasn't making it easier in these different ways. And so sometimes it just took a nice, loving parent friend to say, you know, Kate, that's anxiety. Or, have you thought about this? And it helps just knowing that they've been there and they get it right.
Len Arcuri [00:29:15]:
And it's that situational support. Right. Because if you're wrestling with sometimes, sometimes just the right person giving you the space to kind of figure things out, or with a well timed suggestion or a different perspective can make all the difference in the moment. Because that's very different than kind of keeping all this bottled up and periodically checking in with community. So to have more of a real time support network again of the right people, of the right loving people, accepting people, encouraging people. And that's where again, in this landscape of different support that's out there, not all support meets those criteria. There's a lot of people out there who just do want to tell you what to do and there's a lot of people who want to judge what you're doing. So to really find people who are truly supportive of you, it's a bit more of a challenge, but not impossible.
Kate Swenson [00:30:09]:
I always say when I'm presenting. When you have a neurotypical child and your questions are about baby led weaning or just these more typical questions, you can ask them anywhere. You can ask them to a fellow mom at the grocery store or at the pickup line at school, or you can ask these questions when with Cooper, I never had a place to ask. And then, I mean, you try asking about medications or self injuring or aggression on a mommy Facebook group and you will be destroyed. You don't ask those questions. And so once I, you know, found a place to ask, isn't that just like one of the interesting things about our community is I feel like we're all so afraid to just ask. And it's like, let's just talk about that. This, let's talk about it, you know.
Kate Swenson [00:30:57]:
Yeah, that's what you're doing. I mean, you're doing that. You're starting. I always say I just want to start the conversation. Right, that's it, Start the conversation. You take it from here.
Len Arcuri [00:31:07]:
Exactly. And the reality is whatever you do, there's always going to be people who are going to judge you, people who are going to disagree, you know, on any topic. I mean, we get constant feedback just by saying that autism is something that you can do, something about, you can help your child. And again, that's where people get into this weird back and forth about acceptance versus trying to not change your child. But again, I think there's a sweet spot in there where you can accept and love your child 100% unconditionally and value their unique characteristics and superpowers and even accept the areas where they don't have skills that you'd like them to have skills so you can accept your child while still trying to figure out what is happening with them and to help them. And so that's where, as you said, you're in this weird place in the middle, that's the place to be. Because the two extremes ultimately aren't ways that you can show up your best self or your child by saying, no, I'm going to accept them as is and do nothing and just accept them as they are, or I'm going to make them become someone other than who they are. Those two extremes don't have long term success.
Len Arcuri [00:32:24]:
So there's some sweet spot in the middle that as a parent, you can find what that is for you. But the reality is there's so much we can do not to reduce autism, just there's so much we can do to meet our child where they are and help them have a life that's meaningful, where they thrive, where they're the best self that they can be. And I found that so many times. What was true with my son, and it sounds like what's true with Cooper, is that my son, throughout this whole thing was always pretty content with what he was doing. He wasn't upset as much as I was upset by what I was seeing. So that's where, again, it comes down to as a parent, meeting your child where they are, helping them become the best version of themselves, as opposed to what I had in my head is what I wanted him to be. So, so that, that change in perspective was very important.
Kate Swenson [00:33:17]:
Yeah. And, you know, reach their highest level of independence. I think as Cooper's getting older, because, you know, I'm, I'm getting older and one day I'm not going to be here. I mean, that's a whole nother podcast that we could dive into. I mean, talk about fear. But, you know, I want him to be able to maybe bathe himself, wash his hair, put his shoes on, brush his teeth, all the things like, what's his level of independence? And so that's what I work towards every day. I'm so focused on that. Like, Cooper, you can get your own water.
Kate Swenson [00:33:46]:
You're 14. He'd rather have me get it for him. You can do this. You know, he's so lazy. Trust me, he's just a lazy little punk. But I'm like, you can do this. And so I think there's a fine line of like, what is his best self? He can do more. I know we can.
Len Arcuri [00:34:02]:
And he's not lazy. He's just super smart because he knows it's easier. It's easier if you do it. So he's probably more smart than lazy. But I hear what you're saying. Even now with My son, who's 18, I'm still having those conversations. I want him to do more. And I think you want independence for your son.
Len Arcuri [00:34:21]:
Right. Unapologetically. Why couldn't you want independence for your son? Where I know there's people who would knock you down for even wanting that. Right. And saying no, just honor and respect and. No, no, no. You can want independence for him and do everything you can to help him achieve that. It's when we cling to that outcome.
Len Arcuri [00:34:40]:
Right. And that sometimes creates a lot of unnecessary friction. But yes, parents, go for what you want. It's okay to want more for your child. And again, what's going to be the most helpful for your child is going to be very unique to them. And why. There is no kind of one size fits all or one game plan that all parents need to follow. It's all so wildly unique to that individual.
Kate Swenson [00:35:07]:
Yep. And I mean, and he's doing things every day that amaze me. I mean, truly. I mean, and they may be small and someone might not even notice, but. And I have a friend whose daughter is 26 and she has the diagnosis of severe profound autism. She said her first word at like 23. And she is a lifelong learner, like all of our kids are. She's doing things now in her 20s that her mom never thought possible.
Kate Swenson [00:35:32]:
So that's given me so much hope. I have a rocky relationship with hope. I've shifted from hope to realistic hope. But he's going to do so much more than I thought when that diagnosis was handed to us at three.
Len Arcuri [00:35:48]:
I know he is, no doubt. Yes. And I share your wrestling with hope. And so kind of like whether it's informed hope, realistic hope. I mean, there's a lot of terms you could put in there, but wanting more and hoping and trusting that more is possible. And again, I think a lot of times it's easy for us parents to ignore all the ways that our child is progressing because there's so much that we want. Our wants never end. And so to really be able to be present, as you said early on, and to be connected enough on a day to day basis to even notice as your child's growing and again, moving in a direction of thriving and again becoming the best version of themselves, that is ultimately the goal.
Len Arcuri [00:36:38]:
And there's so much that a parent can do to stack the deck for that. And so I know a lot of it comes down to acceptance and love, and I know those are themes that are predominant in your book. Is there anything else that the three of you moms. I know each of your stories is very unique, but was there any other unifying element of the journeys of each of you that you'd like to talk about?
Kate Swenson [00:37:04]:
Oh, I would say there's so many. I mean, it's interesting because two of us have four kids and one of us has five kids, so we all have pretty much big families. So, you know, the overlapping feelings with the siblings, the decision to have more children, marriage, the feeling of having a child different in school, transitioning from, you know, are we mothers? Are we caregivers? I mean, it's interesting. It didn't. The diagnosis didn't necessarily matter. The feelings. There were so many parallels and overlaps. And so that's why I'll notice sometimes people will be like, well, my child is, quote unquote, higher functioning, or my child has a different disability.
Kate Swenson [00:37:42]:
It doesn't really matter. We're. We're walking similar paths. The. The feelings overlap. So instead of driving us apart, I think. And by putting. And I'll tell you, when we started the book, we didn't know that there'd be so many parallels.
Kate Swenson [00:37:59]:
Like, we thought maybe one of us will write a chapter in education, one will write one on the diagnosis. But the way we did it was all three of us wrote a third of each chapter. And so you can see it so you could pick it up no matter where your child falls on the spectrum and see your story in a boy or this child. It's amazing.
Len Arcuri [00:38:16]:
Really fantastic. Well, yeah. So if you want more details on what those common elements are, definitely go out and get this book. I know when this episode comes out, it'll be right probably before it gets released. So order it on pre order. And again, I think there's so much benefit you can really get for your own journey by understanding the people who've gone before you. And I know, even though the unifying element of the three moms in the book is autism spectrum disorder, the concepts that are in there are applicable regardless of what you're wrestling with from a parenting perspective or what's happening with your child. A lot of those key themes that you mentioned are universal.
Len Arcuri [00:38:58]:
So I'd encourage everyone to get the book. And, Kate, I really appreciate you taking the time to share this message, to share this book with our audience. Any final message you'd like to give to our listeners.
Kate Swenson [00:39:10]:
Oh, this is great. I just love finding out about things in the community that can help other parents. Again, if you're listening and you feel isolated, you don't have to be. I mean, we're out here. Reach your hand out, Come find us. Share, listen, tell your own story. I just. I wish someone would have drilled that into me in the beginning.
Kate Swenson [00:39:28]:
You're not alone.
Len Arcuri [00:39:30]:
Powerful message. Again, thank you so much, Kate. Wishing you the best of luck with the book. And thank you again for what you do.
Kate Swenson [00:39:36]:
Thank you.
Len Arcuri [00:39:38]:
Your child wants you to transform now, and the fastest way to do that is with personalized support. To learn more, go to allin parentcoaching.com intensive SAM.
