DrMomCast
DrMomCast
E6. Parenthood, love, invisible disabilities, and finding community with Kate Swenson
We're delighted to be joined by Kate Swenson, fellow hockey mom and founder of Finding Cooper's Voice, an online and in-person community where families of children with disabilities can come together to celebrate, laugh, cry, learn and get support.
With over a million followers Kate's goal is to normalize the stigmas surrounding having a member of the family with a disability and what she refers to as a "secret world." Her book, Forever Boy, A Mother's Memoir of Autism and Finding Joy was published in 2022 and quickly became a national bestseller. Kate, her husband, and four kids, live in Minnesota.
This isn't just about Autism, but for all of us.
For a quick introduction to Kate and her story, see https://www.today.com/video/mom-shares-hope-for-son-s-autism-journey-in-book-forever-boy-137215045682 .
Follow us on Instagram @DrMomCast and send us your questions and any topics about which you'd like to learn more.
On today's episode of doctor, mom cast, we have bestselling. Author Kate Swenson. Kate was featured on the today show. Show after her vulnerable videos about raising a child with autism went viral. Her book forever. Boy Chronicles the journey of a family, raising a child with a disability. Kate is a working. Working mom. Wife advocate in superhero. Through the lens of authenticity, vulnerability and humor kate shares her moving story of their life raising Cooper. This is not a story about autism, though. It's a story of parenthood. Good marriage, sibling relationships, and most of all love And because we always These Have more to say stay tuned after the podcast for bonus content
Marla:hey everybody. Welcome back to Dr. Mom Cast. I'm Dr. Marla Shapiro here with some of my favorite sports neuropsychology colleagues
Alissa:dr. Alyssa Wick.
lisa:Dr. Lisa n Baca.
Sonia:Dr. Sonya.
Beth:Dr. Beth Poff.
Summer:Dr. Samran.
Marla:And we're all here to talk about kids sports, health, safety, anything else that comes up. In our last podcast. I really loved our conversation on concussions, but one of the things that we didn't touch on is how. Concussions are an invisible injury, we deal with a lot of invisible disabilities in our work, whether it's, autism, A D H D, anxiety. And while those may all sound like very different things, or why would sports focused parent be interested There's a lot of commonalities in how we deal with our kids, with our families, when you've got a member of the family with some kind of invisible injury or illness. I think autism is a great example of that. And I mentioned that because this is Autism Awareness Month, and we have a terrific mom joining us tonight. Lisa.
lisa:we are going to be joined by Kate Swenson, kate is the creator of Finding Cooper's voice, an online and in-person community where families of children with disabilities can come together to celebrate, laugh, cry, learn, and get support with over a million followers. Her goal is to normalize the stigma surrounding having a member of the family with a disability and what she refers to as a secret world. Her book, forever Boy, a Mother's Memoir of Autism and Finding Joy was published in 2022 and quickly became a national bestseller. Kate, her husband and her four kids live in Minnesota and we are lucky to have them. I know Kate. Because our second board sons played hockey together, Kate and I have spent many an hour together in a cold hockey rink. And she's just like fun as hell.
Marla:Hi Kate.
Kate:Nice meeting all of you.
lisa:kate is a mom with a child who is severely autistic for those of you who are not familiar with autism the current stat is that one in 44 kids are diagnosed with an autism spectrum disorder. And boys. Have a four to one higher likelihood than girls, it's a neurodevelopmental disorder that affects kids' socialization, their social communication, their ability to express themselves emotionally. Generally speaking, it's a hard time communicating altogether or a hard time feeling comfortable in conversations, reciprocating in conversations, there can be a hard time with sarcasm and jokes and a tendency to interpret things very literally. And with that tunnel vision where they tend to get highly interested in one particular area. They can either be sensory seeking, or the opposite where their body lets in way too much stimulation most kids have a healthy mix of both of these things These are just some of the characteristics and I'm listing the diagnostic criteria. There are also amazing thing about these people, like they tend to be highly artistic. They are incredibly good at memorizing facts about their areas of interest. They tend to be very musically talented Each kid has their own strengths. It is a lifelong disorder and the way that we used to talk about autism, On a spectrum, and we used to see the spectrum as very linear, where we had mild autism, which we used to call Asperger's, but Dr. Asperger had some Nazi ties. So we're trying to move away from that.
Alissa:Late.
Beth:I didn't know that.
lisa:Yeah, Asperger's, was creating problems with people getting services because it was misunderstood as being mild because they were highly verbal and had average to above average intelligence. In terms of services people didn't think that they were severe enough to qualify, which is not at all the case. And the other end of the spectrum. Again, if we were talking in our 1980s autism verbiage, severe don't really talk a lot of self-injury a hard. Communicating in general.
Alissa:what's the current thinking regarding symptoms
lisa:Now we're trying to look at it more of a diagram like a pizza. If you picture a circle and there's a lot of different slices of the pizza, each slice is a different Symptomology a hard time expressing your feelings. Anxiety. A D h D. Sensory seeking, rocking hand flapping, sensory sensitivities, startling easily being uncomfortable with clothing on. And some kids are gonna have tons of toppings on one slice. I've got a ton of stuff going on in that one area, but they might have nothing going on, on a different slice. And so we look at it more of this whole person. It's not a severe, a mild because you'll also meet people who have autism, who used to be defined as Asperger's, who suffer greatly. They might be terribly bullied and have terrible mental health things going on where it ends up being extremely severe. And so it minimizes it to be identified on this linear plane of the spectrum.
Marla:There's a lot of variability. Autism or an autism spectrum disorder. It could look different in different people with some of these core features.
lisa:Exactly.
Beth:That's a great description, Lisa.
lisa:So we have Kate joining us,
Kate:hi.
lisa:And I have to share a fun fact about Kate she is the only parent on the hockey team to be invited to the parking lot post-game for a West side story style fight by an opponent's parent, which I know to no fault of her own because she is the most delightful person and non-confrontational.
Beth:like a badass crate.
lisa:And we need to have an episode about overly enthusiastic sports parents at some point. But I
Kate:Yeah, it was some really confrontational parents on the other team that were swearing and yelling, which always baffles me, like when people swear at children.
Marla:Well, you can swear at your own children, but not somebody else.
Kate:Yeah. And one of their players got hurt and then, the dad just really took it to the next level. And, I'm a nervous laugher as he was screaming obscenities, I was laughing cause I'm so awkward and he thought I was laughing at him apparently. So he came at me multiple times and tried to get me to meet him in the parking lot. And I've never in my life have ever, I'm a like, I'm a 39 year old woman. I'm like, I've never, are people meeting in parking lots?
lisa:Poor Kate, I wasn't at that game. When she text me, she's like, Lisa, does this always happen? You said things get rougher the older they get. I'm like, no, that, that's anno an
Alissa:Oh
lisa:Um,
Kate:fight ring. I just didn't know this stuff.
Beth:Well first role of Fight Club. is you don't talk about it.
lisa:So I knew about Cooper, who Kate will tell us lots about. More than halfway through the season, we had an away tournament a few hours away, and Cooper came with, and we got to meet him and experience their family together. It was so incredible what a big deal it was that Cooper was out in the world. And that brought me to wonder what could we have done to make your life better, easier, and just in general for any parent who has a kid with special needs. So before we get to that, will you just start by telling us all about your family and your book?
Kate:Yeah, so my son, Cooper, he's now 12, a sixth grader, and then I have a neurotypical 10 year old, four-year-old, and one-year-old. And my husband will joke that four kids is entirely too many. Our life is insane. It is loud and messy, and we're just way too much in general. Cooper was born, very, typically, normal pregnancy, pretty normal delivery. But everything was fine and brought him home and right away I knew something was going on. He, struggled to nurse, refused to sleep. He slept six to eight hours in a 24 hour period as a newborn. And, for context, my youngest slept like 23 hours as a newborn. And right away I knew something was wrong, but it was. No, 12 years ago, and I was met with, you're a first time mom. Relax, calm down. You clearly have postpartum. Just really told to sit down and be quiet pretty much. And I knew in my heart something was wrong but no one listened to me. And what are you gonna do? You have a newborn, you just keep going. So flash forward, speech never developed and he was diagnosed with, level three, severe non-verbal autism at age three. Could have been diagnosed at nine months, but there was waiting lists and all these hoops to jump through. Boys are late bloomers, late talkers, lazy, all the things. We ended up moving, for services, which is very common. And it really was the start of our. Unraveling as a family because, we moved in a weekend. Moved in with my husband's parents, turned our worlds upside down, from, ages four to eight, Cooper really regressed, which is hard to imagine. He was getting bigger and he was growing up, but he was not advancing in any way. He had zero communication and we, entered the world of self injuring and aggression and really hard behaviors and our world just shut down. we had three locks on every door, alarms on the windows. We couldn't go in the front yard. he'd run to the road. We couldn't be outside cuz he would climb fences. And the whole time I kept working and I kept smiling and I kept saying I was fine and no one had any idea what was going on. And I was just totally falling apart. Around eight was when we, found medication for anxiety, and that was our really our turning point. Our big tool in the toolbox to help him. So today he's 12, he has 25 or so words, which is amazing. He communicates with the speech device. He is still an incredibly challenging little human, exasperating at times, but he is a love bug too, and wonderful blessing in our life. He's come farther than I ever thought he would. So now it's just the sky's the limit. Let's keep.
Beth:You said you moved for services, can you talk a little bit more about that? Is that a common thing and kids with families with, do kids have autism?
Kate:Yep. It's actually twofold. I'll touch on both, so I'm not sure if your guys are familiar with Duluth, Minnesota. It's not that rural. There's 65,000 people. It's two and a half hours from the metro. there was nothing, I mean, literally nothing. When we went to the school district, I swear we had the first kid with autism. They didn't even have any idea what they were looking at. They put us with a no way being ageist, but like a sweet 75 year old teacher, a day away from retiring and she couldn't chase after him. so we drove down to the Twin Cities where I have him diagnosed. We were at a nine month wait to get the appointment and then drove back, and we were already doing everything, we're getting speech and ot and they were not helping him in any way. And the phone rang two weeks later and it was, the clinic in the Twin Cities and they said, if you can be. And it was like three weeks. If you can be here, we'll get him in this day treatment program and we can significantly change his life. And no one had ever said that before. And I walked downstairs in true dramatic effect with a baby on my hip, and I said to my husband, we're moving. If you fight me on this, I'll leave you. And that's what I said, because I had to help this kid and we moved. But, it's very common because you have to choose. We were able to transfer our jobs, so we were really lucky, but a lot of families can't do that. The second part to it is every state has different services and supports. Minnesota is phenomenal, we have Medicaid for every child with disability. We have, really great grants and supports, Wisconsin. Terrible. So I know so many people that have moved from Wisconsin to Minnesota to help their kids.
lisa:Kate Wisconsin night. She says that she was born in Wisconsin. She's
Kate:Yeah. So, it really uprooting families. You have to prioritize, and not everyone can do it, so in no way, judging if you can't. We made the decision, we're going for this.
Marla:It sounded like for three years people poo you. You knew something was wrong, and can you speak to what it took for you to finally break through and get those referrals and diagnoses,
Kate:Yeah, I don't know why anyone didn't believe me. I, it was so bizarre. Cooper was entirely non-verbal. He had no words, but he did, smile and point and wave and 10 years ago, autism was a really black and white checklist. It was really rigid. funny enough, it's like it was one of these 10 things, right? Cooper was incredibly autistic, but he did those things. I remember one of the things was does he play with toys? Yeah. Yeah. He plays with toys. Well, if they would've dug in a little bit, he didn't play with toys at all. He, lined up trains and then had a complete meltdown and would chuck them across the room if anyone touched them or if they moved. But, first time mom, I was like, we're playing all the time,
Marla:Yeah.
Kate:So I, I'm hoping that part's gotten better,
lisa:So what made you wanna write the book
Kate:I never planned on writing a book. Never crossed my mind. I've always been a blogger. I like writing little snippets. I love writing and taking a really pretty black and white photo and explaining our life in, three or four paragraphs.
lisa:When did you decide that you were going to share with the world what you were so heavily struggling with?
Kate:Yes. Cooper was two not diagnosed. The terms, speech delay, developmental delay were being thrown around. I was holding onto those as tight as I possibly could, and I, had no one to talk to. My two best friends had kids the exact same age that were talking and developing. And I needed someone to talk to. And I was super isolated up in rural Minnesota. So I told my husband, I was sitting on my couch. I'm like, I started a blog. And he's like, what's the name? I'm not telling you cause I wanna write about you. No lie, I wanna like write about how he was so unsupportive. I thought it was a really catchy title, finding Cooper's voice. we're gonna find it, obviously it's gonna be fine, you know. Flash Forward, started Facebook like five years later. Just to find other families like ours. I do live videos and I just talk about aggression or different topics that are, relevant in our life. I have a sweet lady who every video she was like, you should write a book. I end up finding out she lived in New York City. Her neighbor is a book agent. And it just kind of progressed. I flew out there, met with the agent, and the agent was like it's super easy to write a book. You just put your blog together.
Beth:I'm.
Kate:Um, it was not super easy. Friends, I'll tell you that, um, signed my contract with Harper Collins on Friday in March, three years ago. And on Sunday the world shut down for Covid. No daycare. No school, no therapy. And I had six months straight, 60,000 words and found out I was pregnant. It was like, boom.
Alissa:Oh my gosh.
lisa:Is this what baby number three or four
Kate:four.
lisa:So you already had three
Kate:I have book ptsd, t s d, everyone's like, isn't it just magical to write a book? And I was like, well, if you're sitting at Starbucks, like pinning your memoir, I'm sure it wonderful. The glass like,
Sonia:Oh my God,
Kate:Yeah.
Sonia:incredible. Kate, what is your day job? You said that you continued to somehow manage to juggle your job while you're, carrying this heavy, burden and trying to find support. And what's your other job? Are you a writer
Kate:When I moved to the cities, I took a job at pbs, the TV station, I worked in business development It was like my identity. I love working. Then when I had. My third son, I went back to work after maternity leave and at that point I had started working with Facebook. I had, started testing their products and earning money through Facebook. basically the same thing for PBS that I'm doing, I could do for myself. So I took a leap of faith, which is not me. I'm not an entrepreneurial person, but it's been phenomenal. I work a lot more now. I lead support groups in person and online, write, public speaking.
Sonia:Wow.
Beth:You are impressive as hell, Kate.
Sonia:Yeah,
Marla:you're having this da, da da life, you're working, you've have kids, but you have this secret world and you're blogging. Did you feel isolated? What do I do? Who could understand? Did people know what your life and experiences were really?
Kate:That's a really good question. When I talk about it now, I use the term caregiver in crisis. So my husband and I were actually divorced from each other. That's like a secret part of that's in the book. We were divorced and remarried to each other. I had bought a house, I worked this job and I had two kids and, locks on the doors and alarms and when we came home on a Friday, we couldn't leave till Monday. That's how it was. You couldn't even go outside. So I incredibly spoiled my second son because I had everything toy he could possibly imagine cuz we were locked in the house. And no, no one had any idea that I was a caregiver in crisis because when you carry it well, people think you're fine. And I refused to let anyone know how hard life was We couldn't ride in the car safely cuz Cooper would, try to jump outta the car. He would attack Sawyer. We couldn't go into stores, so if we needed milk, we had to go through the drive-through and get 10 McDonald's milks because I couldn't go into a store while holding him and restraining him from hurting his brother. There was no delivery eight years ago, seven years ago. There really truly wasn't. And then, we had to live in the dark because he wouldn't let the lights be on. So I had a headlamp when I was at home. Curtains had to be drawn. it's just almost unbelievable to talk about now. And no one had any idea because I would say, I'm fine. Everything's fine. If I was presenting to a group of women, typically women, I always say, there's someone in this room who's a caregiver in crisis, who is living this life. And if it's you, you know, I see you. Usually then, five people burst out crying because they're so isolated
Alissa:Knowing what you know now, would you have been more vocal about it or you're encouraging others to be vocal about it?
Kate:This isn't gonna sound insane cause it wasn't that long ago, but there were no real support groups back then. I think Facebook has really ramped up. So now there's a lot more online support. Covid has changed that too. But there was no one I knew, no one that had a child with severe nonverbal autism. Absolutely. I tell every mom to don't do what I did. Ask for help, take the help, take it all. But for me it felt like, I was a failure if I really let anyone knew how, how dire it was.
Summer:So when was the point that you felt comfortable, Kate being able to finally disclose and talk about that side? You kept secret. Was there somebody that helped draw that out for you or you finally just said to yourself, I'm gonna take the leap
Kate:I had a breaking point. I brought Cooper, to the Mall of America, to see Elmo. I worked for pbs, so we got to go and do this behind the scenes thing, and he was probably six and it was the hardest experience my husband came to divorce at the time, but the hardest experience we'd ever had. He was, attacking us and running and rolling and people were like shielding their babies from us and whispering about us. We brought him home. And that night I was giving him a bath and I was washing his feet and they were not little feet, they were big feet. he was a boy at that point. Still no language, no communication. And I spent the whole night sobbing and I let myself go to this place of, he's going to be severely autistic forever. This isn't gonna get better. I'm gonna die someday and he's gonna have no one to take care of him. I let myself go to these like darkest places, and the next day I filmed a video. About this, and I put it on Facebook and it went viral. I made it to the Today Show, and it was my lowest point, which should never be public, right? Like you're rock bottom, mine was. And from that, it brought so much unbelievable, good, some ickiness to me too, that happens, but so much unbelievable good. And I was not alone ever again after that. It brought all the
Sonia:Hmm.
Marla:Oh my
Kate:I have this saying that I live by that your story is the answer to someone's problems. No matter what you are going through, you are rocking it and you are helping someone just by sharing. so that was my changing point.
Summer:Wow. Incredible.
Kate:You can see it if you wanna see it, just search Kate Swenson, today's show. But I don't wanna watch it.
lisa:did you say you don't wanna watch it?
Kate:I have it in my presentations that I give, but I leave the room. I'm crying on the internet.
Summer:What vulnerability. Wow.
Alissa:Your writing is incredible. you have this way of writing that you can feel. You describe an exhaustion I've never even let my mind think about. And then I hear you. I think, I don't know how you worked, how you had no sleep. The patience of the daily routine, the getting up at four in the morning.
Marla:That's, that's something I wondered, Alyssa. Kate, thinking back to those dark times when you were not exposed, are there things a friend or a neighbor could have said or done how could people have helped you more not have to fall off that clip or could.
Kate:above all, I think it is a journey you have to take alone. I really do think you have to just go through it, but what I needed more than anything, and I never got it, was I needed someone to just come sit with me. I'm a pretty emotional person, so I never had anyone that would just sit with me and let me be sad and let me be angry and have all the thoughts. And that's what I try to give other women. permission to just, you can say this is crummy. right now and this hurts. I think that's how we heal and I really do think my journey would've been a lot different if I would've just sat in those feelings right away.
Beth:my husband and I went through years of infertility treatments it's no way comparison to what you've been through. I but, I wanna just reinforce what you said because everybody wants to say something. They make you feel better, and sometimes you just want someone to be there with you and sit in the suck. Sit in the suck is, or Dr. Sonya likes to say. I think that's good advice for people because people don't know what to say, right? They don't understand autism, they don't understand fertility. They don't understand grief. And they mean well. And then they end up saying dumb shit.
Kate:Yeah.
Summer:And so Kate, it would be great if you could tell us some of those things that's really hard to hear. What could you give as to Beth's point as examples of just, please don't say this if you can help it.
Kate:I had a, a blog post once about how I never had the right amount of hope for people. And what I meant by that was if I was to say, I hope Cooper can use a speech device someday. I felt like, someone in my life would be like, well, don't give up when I'm talking. Okay. Or if I would say gosh, I hope he can live with me forever. well, gosh, you know, you don't know what he's gonna do. He could still drive, he could still be independent. I felt like no one would ever meet me where I was at. If that makes sense.
Summer:Yeah.
Beth:does. That is a great way of putting it, is that people need to come where you are I think that's a beautiful way of saying that, Kate.
Alissa:Hashtag title for your next book. Meet Me Where I Am
Kate:yeah.
lisa:Here
Marla:well, People wanna help. They Wanna either lift you up or do something. But to your point, you don't need to be done. You need to just be with
Kate:Yes. Yeah.
Marla:a really crappy grammar. But you
lisa:kate, your book is so freaking good. And it's not about autism. The whole time I was listening to it, I was thinking about it this book is for everybody. And you did at the end come around you this is not about autism. This is about motherhood. And the book is just so incredible. I don't wanna give too many spoilers, but it starts with a miscarriage and you talk about your marital things and the struggle of balancing having two kids, forever Boy, is what it's called. I cannot recommend it enough for any parent, going through anything at all, and all the things that we just go through in general. But then obviously for people with autism, it's amazing.
Kate:It always surprises you who follows you, what groups of people. I've had so many moms reach out to me where their children struggle with depression or, suicide, or,, coming out in different ways where they just don't really fit in in a group anymore. And that's kind of what it is. It's like you wanna fit in this motherhood group, but when something pulls you out, you have to find your new group. And sometimes it's hard to put yourself out there and find
lisa:Yeah. ever heard of or read the essay, welcome to Holland.
Kate:Oh yeah, phenomenal.
lisa:It's written by Emily Kingsley, I believe, she was a writer for Sesame Street. but she, her son has Down Syndrome and she wrote an essay called Welcome to Holland. The whole idea is that, you get pregnant and you're taking this flight to Italy and you've planned what you're gonna do there. And you're gonna go to the vineyards. And don't quote me, it might not not be Italy, it's been a minute since I've read it. But instead, the pilot comes over the intercom and says, okay, we're landing in Holland. And everybody panicked, wait, we don't know anything about Holland. I didn't research Holland, we're going to Italy. But just getting there and seeing like, oh my gosh, they've got fields of tulips and they've got wooden shoes and they've got windmills, and there's all these beautiful, amazing things about Holland, even though it's not what we thought and not what we planned On their European vacation.
Kate:I just wrote something similar. No, in no way comp that is phenomenal. But the idea on Sunday, woke up, four Easter baskets hidden. Three little kids are running around, in their underpants finding the Easter basket. So excited. Every item, I bring Cooper's basket to him. it's four DVDs from eBay and a Rema paper. Cause that's what he cares about. then he, went and took a nap and didn't go to church. And it's entirely different. It's exactly what you're describing. I'm really working on making space for these uncomfortable feelings. Like, that's like my self-growth thing speaking. That's probably my next book's gonna be about. and not having any guilt with them. And I felt really sad for 10 minutes because these wonderful three kids doesn't make up for the other one. It just doesn't, it doesn't work like that. Later that day while we were waiting for my family to come, our family Cooper sat in the driveway for one hour. I just posted this if you ever wanna read it. He's in the driveway and he's pointing to airplanes and he's gasping at a siren, and then a bug lands on his hand and he points to the bug and then he signed, thank you to the bug. And it was like this beautiful, like hour where I sat with him and we non-verbally talked. And this is okay. There's beautiful moments. I can still make space for this really sad part that hurts. But gosh, how lucky am I that I have this,
lisa:Well, and you're doing such a good job too, Kate, of creating that community. You know, like you said, it can be very isolating when your child is depressed or suicidal or not like the typical kid. And so what you're doing is literally giving people a home and a family, which is incredible. The way that I learned to work with kids with severe autism 13 years ago is so outdated and different than it is now. And we used to, and to a point still do, you know, how do we make kids fit into this world? So rather than trying to change them to fit into our world, how can we change our world to include them? The nature of this podcast is sports psychology, neuropsychology working with athletes. And this is what really. Hit a chord for me is when you brought Cooper to the hockey tournament and not one soul had any idea how big of a deal that was for your family. what can we do at sporting events in public, at the park if we come across a family like you, or a parent like you or a child in crisis,
Kate:Yeah, so our 10 year old is your classic, little athlete. He plays hockey and baseball 24 hours a day, which is exhausting and hard, in itself. But, Cooper can't, yet do sporting events. he watches his iPad, which is what he loves, but when we're in public, it's like he's nervous. So instead of just sitting and chilling and watching the sa same things he would watch at home. He likes to be naughty. That's just honestly the word that I will use. and I'm sure he's struggling, so there's reasons behind it that I don't fully understand. So I like to give him grace, but, he won't sit still. He'll throw things on the hockey rink. He'll run to home base and roll around in the dirt, I mean in he's 12. So it is really, as you can imagine, incredibly challenging. So we made a decision years ago that we were gonna give Sawyer our 10 year old as typical of life as he could have. We're gonna let him have his life and play sports. Cause I know many families that have a member with a disability and the other kids don't get to do things. Because they can't do it and there's no judgment. But we're like, we're gonna bend over backwards to make this work. As time went on and my husband did some coaching, it really put a strain on our marriage that I was missing a lot of Sawyer's life and I cried and struggled with it and we just couldn't get a babysitter. I'm sure one of you is like, why don't you just get a babysitter? You can't get a babysitter for someone like Cooper. It just doesn't work. How do you tell a babysitter that he'll run into the street It doesn't work. We've worked really hard to find a pca, which is a caregiver that can be here with Cooper. So I can go to like at least one thing a week or, whatever I can do. And Sawyer had this hockey tournament that Lisa's son was, how far was Grand Rapids? Like three and a half
lisa:Yeah, three and a half and it, and the weather was bad, like it was a yucky drive.
Kate:and no one knows but we agonized for months. I mean months and months and months. What do we do? do we split up? Do I miss it? Does Jamie miss it? How do we make this work? Is it fair to the other kids? Sawyer wants us all there. How do we do this here's another thing that people would have no idea. I can't take Cooper into toddlers, into a public restroom.
Alissa:would not have thought about that. Yeah. All these little
Kate:things, you know. Just unique, unique challenges, you know? We ended up rolling the dice. We're like, we are gonna jump in and do this. My husband went up the day before with Sawyer and Harbor and our four year old. And I went with the baby in Cooper and we were able to go three and a half hours without stopping. We knew once we were there, we weren't gonna be able to do anything, meaning we didn't even know if Cooper could go to a game. So it would probably be one of us sitting in the hotel room with him, you can be isolated outside of your home. People don't understand that you can be lonely in a crowded room. We did bring him to one of the games. He monopolizes 100% of my time. We had to sit right in front of the glass on the ground. An autistic adult told me one time that she likes to sit on the floor because it grounds her. She wants to hold the ground. So now I have this saying, whenever Cooper wants to hold the ground, he gets to, so we sit on the ground anywhere, you will see us sitting on the ground in the middle of Walmart. And he made it two periods, but it was like me dripping sweat, engaged with him, keeping him going, keeping him there from running, from rolling, from eating things off the ground. He'll put gum in his mouth, he'll throw things on on the ice. And he looks neurotypical people, so it's so hard. Autism's an invisible disability. He's a big 12 year old. It's so hard. So here's another example. he goes to bed at eight o'clock and he can't be alone in a room. So one of us has to be in the room. I know that sounds funny, but every hockey family is sitting down having a drink, socializing, and one of us is isolated. often he'll run in the hallway naked, he has no concept of clothes, so he'll be naked and run around and you have a giggle of boys and it's just embarrassing for Sawyer. And there's so many things. So on the one day, the families were going to a restaurant And Lisa was so wonderful because I had to text her can Sawyer please go with you? And I'll tell you, my husband was like, don't ask anyone. Like, don't anyone. And I'm like, I think she'll do it. I think I'll, we'll just throw money, Adam. Just take the money.
Summer:She'll, she'll take drinks.
lisa:parents of the year, we took the half the team to see cocaine bear. These are 10 and 11 year old boys. I'm like embarrassed to say so. But
Kate:still talks about it. It's like the
lisa:came to Cocaine Bear.
Alissa:Is that. rated R?
lisa:I mean, let's not be judgmental Alyssa.
Alissa:I'm not judging. I, it's just a
lisa:It, it, it is rated R but here's what we decided. There's no sex. We don't want our kids to see any sort of affection and love, but it's okay for them to see a bear, you know? Decapitating out a human. No, we didn't make anybody go.
Kate:It was a lovely movie, by the way.
lisa:It was, it was, it was beautiful.
Alissa:I bet. For a bunch of 10 year old boys. You are parents of. You are parents of the year.
Kate:Yeah.
Beth:You are the cool parents.
Alissa:You are the
lisa:yeah, so Sawyer came to the movie with us.
Kate:Yeah. Well, so we had plans then to bring the two babies and Cooper to a children's museum. My husband's like, everyone else is going to drink. We're going to the, what was it? The, children's museum and what was it? The Wizard of Oz,
lisa:Oh, Dorothy. No, not Dorothy. What's her name? Judy Garland.
Kate:Garland. So he was so pissed. So we pull in and it's filled to the max, and Cooper can't handle crowds anyways, so we're like, oh gosh, oh, maybe we shouldn't go there. Should we just go back to the hotel and sit in the. He's like, screw it, we're going to the restaurant. So we went, and Cooper's never been to a restaurant, not since he was 18 months old. So we went and it was the most perfect setting because it was like really quirky. and it was super loud. So he sat on the floor and watched his iPad the whole time, and he needed one of us to typically me to be right there. But we stayed for two hours and I cried the whole way back to the hotel because we had never been to a restaurant as a family. Yeah. So it was like the most powerful weekend of our entire life. And for everyone else, it's just a hockey weekend. But it was just amazing. That's kind of the story. we make a lot of choices and I, often I have to choose Cooper and it's, I have a lot of guilt over that. But this one weekend we were able to go.
lisa:So what if, you are out in public and Cooper's having a full blown meltdown. I think so much of what people who don't have a child like Cooper struggle with is they just literally don't know what to do they desperately want to help, what can somebody do to help you in those situations?
Kate:I get asked this all the time, it's probably the most common question I've asked, and I'll tell you the answer varies for every person. So that's one thing to remember. There are some moms that, like I used to be in the angry space where if you are gonna even stare at me kindly, I'm gonna give you the nastiest look. I mean, that was me probably eight years ago, right? You change and grow. But the things that have helped me, Just immensely. When I, I used to have to physically carry Cooper, flailing and screaming when someone would hold a door for me. I had someone return my cart at Target. I've even had someone carry my purse, when it was spilled out. So powerful. I had a sweet lady and I was caring Cooper and I had Sawyer and I, this is a, I think a part in my book where, you know, he was reaching his hand up. He was little to, to hold my hand and Cooper was kicking him and I'm like, just follow me, just follow my voice, you know? And this lady followed behind us and I know she was just watching out for us. But there's so many little tiny things. I've had people put their hand on my shoulder and say, you're doing a really good job. Or me too, I've been there. I really do believe that 95% of the people are kind and they're just curious and they just don't know what to do. I really don't think that most people are mean or judging or you just dunno what to do.
Marla:What can they say to their kids? Because kids look or kids stare. Kids ask questions. And not just that we model, but we wanna help them to grow up to be kind and helpful.
Kate:I have a really cute story about kids one time I would say Sawyer was like four, and there was a young woman in a wheelchair. She was physically disabled and Sawyer was doing the, like pulling on me. He's like, mom, what's wrong with her? Why does she look like that? And so we walked over and I was like, hi, my name's Kate. This is my son Sawyer, can we talk to you about your daughter? And the mom, talked for five minutes, with Pride about her daughter who was 21. And she talked all about her. And you know what happened when she did that? It normalized her. And Sawyer was no longer afraid of her. He, she no longer stood out, you know? And then the cutest part is when we went to leave, he ran up to her. she was like, bye. But I really try to do that now. I try to encourage my kids. It's never backfired on me because I think people really do want to share. I think they really do, want to educate and advocate. And we get asked questions all the time. Oh, tonight we had an event tonight at art class for special needs kids, and there was a higher functioning autistic boy there. He probably would Asperger's if they still use that. And we walked in and we sat down and he looks at Cooper you autistic? Cooper's like, yeah. And he's like, yeah. It was so funny. I was laughing so hard. I, I was like, is this like the language of like the house?
Marla:The
Alissa:It's the language of boys too, just normal boys like, what up?
Kate:His mom was like so embarrassed. And I was like, are you kidding me? This is not what we need to be embarrassed about. He's clearly autistic. We're fine.
Marla:Kids do way better with other kids than we do sometimes. it's a natural curiosity and it became okay and it was his friend
Kate:The best thing about kids is kids ask questions when parents shush them. So in our old neighborhood, we had 40 kids. And they were all really curious about Cooper. We'd bring Cooper outside. He refused to walk. He would log roll down the middle of the street. He would run up driveways gently hit his head on the garage and protest, and we just stand and talk to the neighbors while he did his thing And the kids were like wide-eyed. And they'd ask questions. And what I loved about it was, you know, they went home and educated their parents. and educated other people like, oh, that's just autism, that's just Cooper. You know, that's the beautiful part about kids.
Summer:Is there a resource or is it just these moments that are just pop outta nowhere that you get to learn. And it's a lesson. Or do you have certain books or videos that you've utilized with your own kids with respect to Cooper?
Kate:One of the books I love is called My Brother Charlie. It's by Holly Robinson, Pete. So I read that to Sawyer's class every year I think that's a really well done book. One of the things, I, I don't do everything right. One thing I think I am doing right is I'm surrounding Sawyer with children with disabilities. So I was telling Lisa about Miracle League, which we're involved in. Any sports team can volunteer to go and help. They want a different team, one or two every game, and they can push wheelchairs and they can be buddies. And typically in most cities there's some sort of Miracle league, so you can, go and shoot baskets or do things with different kids and it's so wonderful.
lisa:They have the adaptive baseball field that are paved so kids with wheelchairs can play baseball. We actually got, one of my son's teams signed up to help and I said to Kate, I'm kind of nervous because these kids are so competitive. What if my kid dumps a kid out of their wheelchair? Right. And Kate and Kate as assured me and I believe you, that they will surprise you and have so much more care and empathy. And I trust that they will. Miracle League and, special Olympics too, has a lot of opportunities where they have adaptive sports and they love to have other athletes come and run alongside or, or help'em out too.
Marla:There's parallel sports for leagues for grownups. The Cal Peace Foundation they partner with, with whether it's five Ks or triathlons, and you'll see people pushing somebody in a wheelchair. So for adults, and what a cool thing for your kids to watch a parent do is to be a leader for somebody running or biking or swimming or in a chair. That I think affects kids just as much as doing it themselves, or has that opportunity
Beth:I just love this cuz you know, when we were growing up, we didn't see people with disability.
Kate:Me either another part of the school.
Beth:I love to hear this inclusivity, introducing kids to children with disability. And that's how we grow empathy, We need to understand the needs of other people better. Kate, your story is so moving. How do you find the energy? I mean literally physical and, cause I'm listening to your story at hockey and I'm a hockey mom I, I was like, I'm exhausted. Like, how do you
Marla:Beth, I'm looking at her blog page and I can't do that. As a, empty nester, I can't write like that.
Beth:I just really mean just from the physical energy. talk about cocaine, beer. Are we cocaine, Kate here? I mean, like, what are we, what are we doing here?
Kate:We're getting down to the dirty here,
Alissa:I feel like you need sponsorship. In your book there's a lot of sweating. I kept thinking is there some kind of wicking fabric that could sponsor you? Because there was a lot of sweating in that book.
Kate:or coffee or I've always tried to do a coffee sponsorship. It's never happened.
Beth:we're joking, but clearly you are doing so many, many things I'm blown away. You're doing incredible job as a mom and you're a spouse and you're obviously part of a community and you're blogging and writing. So what is your secret to self-care
Kate:I don't know. I don't know that cause I, the other layer is that my almost two year old does not sleep. last night was the first night we didn't go into her room and she still woke up five times and cried for three minutes a time. And I'm like, I can't take anymore. I don't know. I I exercise. Um, I'm working a lot on that. I told Lisa that's my new goal. I don't know, I'm just a really, genuinely positive person. My mom is too. I think that's where it comes from
Marla:not to take away from your superwoman status but the energy people spend faking normal, or I'm okay. I'm okay, is so exhausting. And you give yourself the grace to sit in the suck and to be sad and to let go of that, but to find the joy in simple stuff. And not that still doesn't make you superhuman, but that's gotta help. I would.
Kate:Well, and that's what autism has taught me. there was this quote, and I'm gonna butcher it. But it was like, Someone once gave me a box full of darkness. And I learned too that it was a beautiful thing, eventually. And that's what I truly thought about autism. I thought autism was this darkness. I mean it was just so hard. And now, Cooper is just like this shining light in my life. he is so much work, but he is a shining light. He's given me the gift of sight. He's given me the gift of seeing what matters. And, finding joy, like you said in the simplest things, we can't go to Disney, we can't go on an airplane. There's parts of me that are angry about that. But we went to a cabin up north for spring break and we went for three days this year. And it was so fun. I'm sure anyone else would be like, that's silly, but
Sonia:Mm-hmm.
Kate:the simplicity of our life.
Sonia:real.
Kate:Yeah.
Marla:Real in finding joy. That's
Sonia:Mm-hmm.
Kate:Yeah, and I credit Cooper for that. I really, truly do. I think he's given us that.
Beth:Obviously your blog is reaching a lot of people and your book hopefully will meet many, many more. But I'm hoping that maybe someone who's listening to this podcast is in a place where they're looking for, just give me any little hint, right? Like any little thing to move forward. The focus on the small victories is really wonderful.
lisa:Yeah. Mm-hmm. And we're nearing the end of the time. We will not take any more of your time but thank you so much Kate. Before you leave though, let us plug you So Forever Boy, a mother's memoir of autism and Finding Joy is available everywhere.
Kate:Yep. Yep. Amazon, Barnes and Noble. Um, bookstores.
lisa:It's not just a book for parents with autistic kids. It's a book for everybody. the Facebook page is finding Cooper's voice.
Kate:Facebook and Instagram. Finding Cooper's voice. And I do have a small private group on Facebook. If you are, a parent of a child's a disability and you're just looking for a space to, celebrate and cry and be angry and be seen, get support. It's called Coops, troops. Come join that. I have 250 moms coming the end of April for a two day retreat. We did our first one last year, and this mom said she got more support in the 24 hours we were together than she has in her whole life.
Sonia:Oh my gosh.
Kate:I know. I'm so excited. We have moms coming from all across the United States. We have someone coming from Belgium because there's just no support. There's just so isolated, so
lisa:Yes.
Kate:You know what's so interesting is all the moms wanna volunteer that are coming because there's this thing that happens I think in any group, and I'm saying this about myself, autism moms are awkward because we're so isolated and we communicate mostly online. We can't go places. We're in therapy centers all the time. We don't know how to small talk. We're just, we only talk about poop and autism. That's what we talk about. So they all wanna volunteer. And I'm like, no, I understand you and I get that, but I want you to sit here and be pampered and have a glass of champagne and relax.
lisa:Yes. Yeah. All right, Kate, we will set you free. You are phenomenal. Thank you so much.
Alissa:you for giving
Marla:What?
Kate:This was so fun.
Sonia:Thank you
Kate:okay. Goodbye ladies. Nice meeting all of you.
Alissa:Wow, so impressive.
Marla:I mean, the volume of stuff she does, but her message, I think it just, it's so powerful for so many people. Lisa, thank you.
Beth:Yeah, that was, um, that was unbelievable.
lisa:Yeah.
Sonia:Mm-hmm. I think the thing that Really struck me about her whole evolution as she talked about where she started and where she is. One of the main resilience building strategies is finding meaning trauma and loss and grief and heartache. And she's somebody who wakes up every day and tries to find some meaning in each and every little heartache and trauma that she's experiencing that day. She's the definition of it, finding meaning and doing something good, finding some purpose for your suffering. She was here for a purpose.
Beth:turning that why me into why not me? And how do I then find a purpose in that? Yeah. I just don't know. There's a better example of that than Kate.
Sonia:Yes. Finding meaning and the purpose in your suffering is the millions of people she's helping. The millions of hearts that she's opening,
Summer:how relatable she must be to so many people. Because every time she would say, I'm working on this, or I realize this is an area for me to grow. Didn't we all just kind of breathe a little bit? And you know, we're all, we all, well what is it Marla, doing the best we got with what we
Marla:Doing the best we can. We're doing the best we can with what we got. So how do we end this episode? Okay. There's no end to this episode because we could talk for hours about the extraordinary stories, the examples, what we've learned. Maybe we put a fork in it and pick it up another night because it's a mic drop. She's amazing.
Alissa:And because we always have more to say, here's some after the episode bonus content.
Summer:I'm interested, Lisa, and how you talk about autism with children and their families. tell me what we would say instead of Asperger's now?
lisa:They call everything autism spectrum disorder, but it's level one. So they've got level one, two, and three. Level one is mild, so it's level one. Autism would be what used to be called Asperger's. One of the big reasons is because we had autism then we had Asperger's. So they would apply for disability and it was getting denied because they're you've got a one 30 iq, clearly you don't have a disability. Meanwhile, this kid hasn't showered in months because water hurts his skin and he's being bullied relentlessly and suicidal, but we're calling it mild. And so, that was part of the reason. But also, dr. Asperger was working for Hitler and the third, right. So yeah, they, that is a true story.
Beth:Wow,
Sonia:Can I ask you another question, Dr.
lisa:up? Yes. Step, step into my office, Dr. Mosh.
Sonia:Why do we see prevalence rates increasing? Are we just better able at diagnosing it, or is it actually increasing?
lisa:We're just better at diagnosing it, and that there were probably were more people who needed it. There is a legitimate, overdiagnosis to a point, just like with a D H D, where kids get misdiagnosed when they have these language delays because we don't wanna wait and see. So they'll slap the label on them when they're two years old. So that goes to the CDC C, but it gets'em the speech and language. Then once they can speak and we start to see their socialization, the diagnosis gets revoked. They did not grow out of their autism. They didn't have it to begin with,
Sonia:,are the high functioning or level one autism folks do, they typically have some verbal ability?
lisa:Yes. Yep. So level one is kind of like intellectual disability level one means minimal support. They can usually thrive in a mainstream school setting. They're usually verbal. Their IQ is usually within expected limits are higher. Level two, we start to look at lower levels. A IQ needing speech and language therapy, but verbal, they need, a more moderate level of support. And Cooper's level three, non-verbal,
Beth:there's no, there's three levels.
lisa:there are three. Three being the
Beth:Okay.
lisa:Yep. You know who's really cool is, Amy Schumer married a man with, with Asperger's. The way she describes it is so amazing. It's one of her comedies specials that's on, it's when she's pregnant, if you Google it. But she talks about how she knew something was up with him because they were on a date very early on and she tripped and fell and he turned around and looked at her and just like whatever. And she was laying on the ground
Summer:her dramatic self.
lisa:My, oh my, oh my gosh. Like, do you need help up? And same thing, like he proposed to her, she wakes up one morning and he is just like, here's a ring. Here. Here you go.
Sonia:Yeah. And she's kinda idiosyncratic enough Right? So like it's smart, intellectual, idiosyncratic people who can get a level one autism person and get their humor and appreciate their quirkiness.
Beth:Have you guys ever seen their show, the Cooking Show? It's awesome. It was during
Sonia:Schumer and her husband have a cooking show.
Beth:it was so fun because she's funny, but she's also really loving to him. It's adorable. And, you know, he's He's a, Michelin chef, he's an unbelievably good chef. So it's C O V D. And he is not working because he's a chef. And so they rented this house of a friends of theirs out of the city. And then it was what the hell are we gonna do? So he's basically teaching her and he has no patience for her. It's hilarious. I mean, it's really sweet and entertaining and, I, so enjoyed it. And then when I think when Covid was over, they got outta the house and then went back to their lives. But it, I would recommend it. It's a great show cuz she talks openly about his autism and he's very matter of fact, he's very matter-of-factly about it and yeah. And she's really funny.
Alissa:Which again is good to bring it into the mainstream, right? The more that people can understand differences in others, the
Beth:I like the fact that they, to show somebody with high functioning autism who's doing well, he's a special chef. He's married a celebrity, he has a child. If you're a parent of somebody, there's hope, right? That these people can do really well, depending on obviously a number of factors.
lisa:Kate just texted and said, that was fantastic. So lovely. Thank you ladies so much.
Beth:Oh, tell her she's so inspirational.
lisa:again, I didn't even know any of this about her until three months ago, and I've been hanging out with her since August. She's just a fun chick to be around.
Alissa:she's
Beth:here's the thing. Yeah. And so many people wear their struggles on their sleeve, so it's so amazing. you know, people that you're like, okay, I met you five minutes ago. Now I know all your story. It's so amazing that you knew all this months, and you
lisa:Yes. Well, When I told her I felt like a voyeur reading her book. I didn't know her and Jamie had been divorced and I actually ironically knew Jamie back in college. I've known her husband for years, decades but lost touch over the years. So I'm listening to the book I'm learning things, I'm reading your diary and I'm not supposed to.
Summer:I gotta go guys. My husband's leaving for
lisa:Good night, summer.
Alissa:That's it for us. We are Dr. Mom, cast real science, real Moms real life. Join us again next time.
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