Hope Comes to Visit
Hope Comes to Visit is a soulful podcast that holds space for real stories, honest conversations, and the kind of moments that remind us we’re never alone.
Hosted by author, speaker, and former TV journalist-turned-storyteller Danielle Elliott Smith, the show explores the full spectrum of the human experience — from the tender to the triumphant. Through powerful interviews and reflective storytelling, each episode offers light, connection, and presence for anyone navigating the in-between.
Whether you’re grieving, growing, beginning again, or simply craving something real, Hope Comes to Visit will meet you right where you are — with warmth, grace, and the quiet belief that even in the dark, transformation can take root.
New episodes drop every Monday, so you can begin your week with a little light, reflection, and hope.
Hope Comes to Visit
The Language of Neurodivergence — Not What Autism “Looks Like”: Parenting, Self-Care & Community with Karen Kossow
“I was doing what everybody told me to do… he can make eye contact and have a conversation—he can’t be autistic.”
Today, certified Master Life Coach and writer Karen Kossow gets real about the three-year journey to her son’s diagnosis—and what it means to parent neurodivergent kids while discovering your own neurodivergence. As part of the sandwich generation, Karen is supporting her children, noticing patterns in older family members, and learning herself—often all at once.
This conversation is practical and deeply compassionate. Karen reframes self-care for parents who can’t just “get away,” sharing five-minute vagus-nerve resets, gratitude practices that soften the stress response, and thoughtful choices around food and substances. We also talk about the ache of isolation, the sting of judgment, and how community changes everything—because you’re not a “bad mom”; you’re doing everything you can for this child.
For families navigating a new diagnosis, Karen offers honesty and hope: grief is real, development doesn’t stop, and strengths-based support—with guidance from autistic adults—opens new paths forward.
Connect with Karen and her Self-Care Support Squad: karenkossow.substack.com
Thank you for listening to Hope Comes to Visit. If this conversation helps, follow the show, share it with someone who needs hope today, and leave a review - it helps others find their way to these conversations.
New episodes drop every Monday, so you can begin your week with a little light and a lot of hope.
For more stories, reflections, and ways to connect, visit www.DanielleElliottSmith.com or follow along on Instagram @daniellesmithtv and @HopeComestoVisit
I was doing what everybody told me to do right.
Speaker 2:I was following all the rules and he's talkative and he's outgoing and he can make eye contact and he can have a conversation with you. He can't be autistic and it took us about three years to finally get an accurate diagnosis for him and in that time, you know, everyone just looks at you like you're a bad mom and I'm over here like I literally am doing everything I can for this child and everyone is judging me and saying that I'm not enough.
Speaker 1:Welcome to Hope Comes to Visit. I'm Danielle Elliott Smith. Hope Comes to Visit is more than a podcast. It's a gathering place. It's a place for stories and heart conversations, and a place that we hope allows hope to visit just right on time. Today's guest is someone I am darn excited for you to meet. Karen Caso is a friend, a new friend, a writer, a certified Master Life Coach and a neurodivergent mom of two autistic kids. After years of navigating caregiving, homeschooling and burnout, karen became deeply committed to helping overwhelmed parents build resilience and find self-care that works for their unique lives. She shares honest stories and gentle support on her sub stack. She shares honest stories and gentle support on our sub stack, the self-care support squad, creating space for parents to feel seen, supported and a little less alone.
Speaker 1:Let's take a quick moment to thank the people that support and sponsor the podcast. When life takes an unexpected turn, you deserve someone who will stand beside you. St Louis attorney Chris Dully offers experienced one-on-one legal defense. Call 314-384-4000 or 314-DUI-HELP, or you can visit DulleyLawFirmcom that's D-U-L-L-E LawFirmcom for a free consultation. Karen, thank you so much for being here with me. Thank you for having me. I'm super excited. I am really excited to have this conversation. So this is for me. I've had lots of conversations on the podcast about, about loss and about difficult times, and I I love that we're going to have a conversation about life, about what it looks like to, to live authentically, to address life as it happens and to to help other people, and I I was so drawn to your story when you first reached out, so I I want to welcome you. So thank you for being here, for reaching out and for taking the time with me today. Thank you.
Speaker 2:Yeah it's, you know it's.
Speaker 2:Um, I think a challenge that more and more folks are becoming aware of neurodivergence in general is more and more kids are diagnosed.
Speaker 2:Parents are starting to realize that they themselves are also neurodivergent.
Speaker 2:Um, and we're kind of in that sandwich generation of we're navigating supports for our kids. It's really difficult and then we're kind of hitting middle-aged and realizing there's something going on for us as well, and then, with the reframe of looking back at your whole life and seeing why some of the challenges you had were so challenging, then also looking forward to being like this is why I have some of the family challenges that I have with my elder relations and my parents and maybe my grandparents, aunts and uncles, and it's a really interesting time to be going through this process of learning and growing and adapting. And I've found community is really hard for a lot of people in my position to maintain because we have so much going on in our lives and making space for people to have that community is really important to me and I've seen tremendous changes in people's lives and how they relate to themselves and their children and their parents and their families once they have the tools to be aware of the challenges they're facing and how to deal with them constructively.
Speaker 1:You know it's interesting. I feel as though you've somehow been sitting on my shoulder for the past few weeks when you talk about the middle age and the gap and the kids and the parents, the gap and the kids and the parents. I recently moved my dad from Florida to St Louis and I'm very firmly in that space between kids who have gone to college and recently coming to terms with my own diagnosis, which I had no idea my entire life, and paying such close attention to my dad and thinking, wait a minute, when did that?
Speaker 2:come from.
Speaker 1:And once I had my diagnosis, I called my daughter and I said hey, and she said I think I do too, and I said I'm pretty sure you do, but it's just so interesting because we're able to have these conversations so much more openly now. So what first prompted you to create this community? So let's start there.
Speaker 2:Sure, I have been building community for years it's kind of what I do and I had built a homeschooling community and then I had worked with other autism parents in Idaho, where I live, and it just felt like everyone was saying they wanted self-care and everyone's saying, oh, it's so hard. And when the pandemic hit, our situation was unique because we went from having between 30 to 50 appointments every week between me and the two kids to having nothing, and we had already been homeschooling, so them being at home wasn't a change for us. Suddenly, I had all this space and I didn't know what to do with it and I am not a person who does well without something to do. So I just started diving into learning about copywriting and online businesses and coaching and working for other folks, and it gradually morphed into I want to use the challenges I faced and the tools I've discovered to overcome them, and I want to make self-care something that is doable for parents If they can't leave the house, if they don't have childcare, when they're just faced with extraordinary levels of stress that no one person should have to be subjected to, and when they're in a position where they well, this is the thing I like to say you can leave, there is nothing stopping you, you can make that choice, but it feels like you can't right.
Speaker 2:What does society say about a parent, especially a mom, that walks away from their children? But it's that honest awareness that it is a choice and you do wake up every day and you choose to parent them and you choose to do what you can to be the best version of them, or yourself for them, rather, and this concept that our self-care doesn't look like what we hear mainstream self-care talk. It's not bubble baths, it's not going to the spa. I've never been able to take a weekend away with my girlfriends. I can, you know. My kids are 11 and 15. I'm lucky I get one night a week out and about to, you know, hang out with my mom friends and trying to give people the tools so that they're not struggling as much. And it's, you know, grown pretty well since then and I'm excited to help support other parents.
Speaker 1:So then, what does self-care look like? So if we're, if we're boiling it down and we're saying, ok, so we're not high in the sky, we're not, we're not elitists, we're not, you're not. You don't have the luxury of bubble baths and a master chef and no one is coming to do for you. Yes, what do pockets of self-care for the real world look?
Speaker 2:like. For me it's doing some vagus nerve care, which are some exercises. It's as simple as laying down on the floor and putting your legs up the wall. Do that for five minutes. That totally helps to reset your vagus nerve and to sort of help with some of the physical anxiety sensations that a lot of parents have to navigate. It's helping your body to reset after you've supported your child through a meltdown, which is a very stressful situation For me.
Speaker 2:I do a lot of gratitude. Every time I get really angry or frustrated, I stop myself and say what are three things I can be grateful for right now? The more you do that, it really retrains your brain to sort of focus on those types of things so that in the moment, instead of your brain automatically going to the stress response after a while, you habituate yourself to look at the things to be grateful for and it just helps to reset your brain. I make really healthy choices with my food and I have not been able to drink for a very long time. Um, just with the way my body processes alcohol, we are not friends, um, and it's.
Speaker 1:I'm sober, so I'm in the same category, right? So I?
Speaker 2:oh my gosh. It is a coping mechanism. I know a lot of parents fall into during stressful, stressful seasons of life and when you're neurodivergent or parenting neurodivergent kids, you know that stressful season of life sometimes never ends Right. So it can just become really easy to sort of choose those numbing behaviors is how it always felt for me and to make different choices things that let you show up the way that your kids need you, the way that you feel best about being in the universe, in the world as a parent. And, again, things that you can do even if you can't get away from the kids, even if you can't leave home, even if you don't have support or backup or respite.
Speaker 1:It's so interesting when you talk about gratitude, because gratitude has always been a huge focus for me and I am very aware one of the things that I always suggest to people about gratitude is that we don't automatically go okay, shelter, food, that we truly think about some of the things that put a smile on your face because it's fresh flowers, or the fact that I could feel my kitten curled up inside my knee this morning when I woke up, or that first sip of coffee when I'm waking up, or the fact that my alarm wasn't obnoxious when it went off.
Speaker 1:Whatever it is that I happen to really feel grateful for, and when I am working with people in recovery, I always talk about gratitude, and it's funny because I talk about it so much that people frequently give me a hard time in the. Are you really that grateful type of tone? And I am, because it has long been a tool for me. It has long been something that I have had to focus on in order to keep myself on the right path, and I think that it's like you. I've used it for so long that it's by rote. Now I write it down every day, but there are times when I have to put myself in that place because otherwise I I'd be angry.
Speaker 2:Like looking in a mirror. Yeah, I get the pushback sometimes too of how can you really find things to be grateful for? And once you start doing it, you realize there are so many things to be grateful for and often, if I you know, do a social media post thankful Thursday. What's you know? One thing you're grateful for today? You do get folks that say, oh, I'm grateful for food, I'm grateful for shelter, and that's a wonderful place to start. Where I found like the really good juicy vibes are is with the little things. Like I'm grateful for my washer and dryer because it's really wonderful to not have to deal with dirty laundry going to the laundromat or having to hang things up on a line outside to dry.
Speaker 2:Right. I am grateful that we have a new physical therapist who's working with one of my kids and the company they work for does home visits, so I have one less appointment I have to drive to each week. You know even the really challenging things in our life and not everything. I'm not one of those people that says everything happens for a reason and you have to find, and you have to find the meaning in it.
Speaker 1:Right, I don't know that's actually one of my least favorite phrases on the planet and if it's said to me when I'm going through something, it is a struggle not to reflexively punch someone in the face. Through something, it is a struggle not to reflexively punch someone in the face.
Speaker 2:So it's for me personally the way my brain works. I personally do like to find the reason for me that I've gone through a challenging circumstance. I would never put that on somebody else. I do. It's one of the reasons why I started my business right, Because I had always said that the challenges that we went through when my kids were younger and they were pretty extreme that it had to be for something. It had to be for a purpose greater than you know. I'm air quoting here, but just my personal growth or just air quotes getting the kids through it right. I wanted to be able to use what I had learned to help others and to support other parents so that they wouldn't struggle as much and when you know your, your your kid's having a meltdown, you're really struggling in that moment. To be able to have that reflex of saying there is something here to be grateful for. You know, maybe it's that my kid didn't put a hole in the drywall, right.
Speaker 2:Or maybe it's that we did not have to call the police or go to the emergency room for support. Today, even in the worst circumstances, I try to reflect gratitude to myself because that's how I process my way through it, and I do see how for some folks, that can be very off-putting, but I know that it works for me, so it's a tool that I would share. It helps you don't have to do it and I would never push it on anyone, but it does make a difference, right, and in those goofy little things that maybe you don't notice.
Speaker 1:Well, and so there are a couple of things that you said that I very much agree with that resonate for me. So one is that I don't ever push it on anyone else. Right, I offer it as a suggestion, but I don't. I recognize that any suggestions anyone makes aren't necessarily the right fit for everyone. Right, that's one of the beautiful things about this podcast, because we're talking to so many different people on any given day. I recognize that talking about neurodivergence may not be the right fit for someone today, but there may be a portion of our conversation where someone says, oh my gosh, I didn't know that right.
Speaker 1:Or I might be talking about grief one day, or I might be talking about writing the next day, or I might be talking about cancer the next day, or there's just little bits and pieces. But even within, I was having a conversation with a woman about a maternal her birth experience, and during that conversation she said something that I had no idea about and I thought, wow, now even that's an aha moment for me, and maybe there's someone listening to that who thinks, well, I didn't have that exact experience, but I had something similar and I didn't correlate those two, and so my hope is that, as people are listening, either they're going to hear something that resonates or it will trigger something else, or they'll hear and they'll think someone else might know this might resonate with a friend and they can pass it on. But I don't ever want people to feel like this is the only way we can do this, like if you are in recovery, the only way is AA. If you are in recovery, the only way is meditation or prayer, or I want people to know that there are options, which is similar to what you were saying about the everything happens for a reason.
Speaker 1:I don't believe everything happens for a reason. I do believe for me that I'm supposed to figure out. What am I supposed to learn and what am I supposed to do with this? Because this has clearly been painful and I know that when I go through something painful, I change, like it molds me in some way, and what is the molding doing to me? How am I being refined and how am I changing, hopefully for the better, because the version of me right now wouldn't be who I am right now if I hadn't been refined in all the ways that I have over the course of these amazing and challenging experiences.
Speaker 2:That's such a good way of looking at it, and I think I have a similar viewpoint, and it's it's all about having a big toolbox Right With all the different things in there, and you have to find what works for you, and I think, whether that's self-care, whether it's with sobriety which to me seems like a type of self-care Right, and it's it's a challenging road and you've got to be mindful of what you're doing and how you're feeling and how things are going for you. And to me, parenting is similar as well, where you have a commitment to these humans and you know you have to do the best for them, and part of that is showing up the best way you can, and that's about the choices that you make and the challenges that you face and how you respond to them. So I just I like having a lot of tools in my toolkit.
Speaker 1:What do you think of your life experiences? Has been the sharpest tool for you.
Speaker 2:Oh, that's my kids, um it, they, um and again, I don't go into like super specific details about them, um, I will say that they are a tremendous mirror, right, both of them in their unique ways because, uh, they have a very long list of diagnoses and the two of them and the same diagnoses and I actually have a lot of the same diagnoses as well. But it is so amazing to me how completely different those two kids are from each other. Oh my gosh, it's wild, and it just seems I go a little woo for a second. I'm a gemini, right. So two halves of personality, like one's yin, one's yang, and like the two of them combined, just it's my whole personality come out. That's so funny, it's wild.
Speaker 2:And as my, as my teenager gets older and he settles more into what I lovingly refer to as his grumpy old man persona, he is just turning out to be very similar to me. And when I look back at the challenges we had when he was younger because in reality I can look back now and say it's because we do have the same personality it's just I didn't have all the information about myself and I didn't understand the operating system that my brain was working on as an autistic person, as a neurodivergent person, as I was living through a lot of trauma in the moment, but also growing up as an undiagnosed person. It really all makes sense now and I can look back now and see how I made things harder for myself in the way that I was parenting him, but I was doing what everybody told me to do, right, I was following all the rules and he's talkative and he's outgoing and he can make eye contact and he can have a conversation with you. He can't be autistic. And it took us about three years to finally get an accurate diagnosis for him and in that time, you know everyone just looks at you like you're a bad mom and I'm over here like I literally am doing everything I can for this child and everyone is judging me and saying that I'm not enough.
Speaker 2:And the sleep deprivation unreal, like absolutely unreal. I went five years between the two kids never having more than I was longer than five years. I was like seven or eight, never having more than two hours of sleep at a time, and you know that that was the biggest refining experience, to be honest. So that's why one of the things I always focus on is whatever your family needs to do, and I's why one of the things I always focus on is whatever your family needs to do and I think a lot of people need this permission Whatever your family needs to do to get the most amount of sleep for the greatest number of people in your family, do it. I don't care what it is, as long as it's legal and it's reasonably safe. Do it right, because sleep is just such a huge challenge for families that are neurodivergent and living with autism, no matter what age or stage those autistic people are, so definitely parenting.
Speaker 1:In creating this community. For people who have similar challenges, similar struggles, knowing that you were in this place, where you were being made to feel you were on the receiving end of you, are not enough. You're clearly a bad mom and one of the motivating factors, I'm sure, in creating this community is to prevent other families, specifically mothers, from feeling that glare creating this community, and have you felt as though you've been able to help other mothers through that by providing a mirror for them and helping them to see that they are enough, they are not alone, that it isn't about being a bad mom?
Speaker 2:That is such a good question. You know, when I hear parents say that their child is struggling less, that they're feeling better, that they are prioritizing their own needs because that is something that does not get talked about very often. When you become a parent, usually you anticipate the kids are going to have really high needs that first year and then gradually it'll be a slow weaning of responsibility for you as the parent and it shifts and it changes and you know it goes on with with the development of the child. When you have an autistic child it's classified as a developmental delay. You don't really know at which point their development is going to stop or it's going to be paused or when they're going to pick up on things that they may be struggling with.
Speaker 2:And for me what happened was it was just a really slow slide into having no boundaries with my children.
Speaker 2:Right, because, especially as someone who did the attachment parenting thing when they were infants, which we would have really been in trouble if that hadn't been my plan right, like these were Velcro children who needed to be with me constantly and held and in the carrier and on-demand nursing and yada, yada, yada.
Speaker 2:But no one ever tells parents that I've been aware of how to sort of go from that into having a more boundaried approach to life. And when you have a kid that's autistic, especially one that evades diagnoses for years, there comes a point where you look down at this four-year-old human being and you're like you can talk, I know you can go to the bathroom by yourself, but you refuse to and they're just. They seem so difficult and it is a challenge to parent through it. But then you're having people like well, what's wrong with him or her? Why are they acting like that? Why are they having a hard time making friends? You may be losing parent friends because if your kid's in a stressful social situation and they act out in a way that other parents deem not appropriate, inappropriate, then they look at you like you're responsible and it is your kid right Like you're choosing not to parent right yes.
Speaker 2:And it it's very multi-layered and a lot of parents you know, find themselves, for the less obvious autistic kids that five, six, seven your age not having a lot of friends, possibly having burn bridges with family again which comes into the not diagnosed elders being like why can't you just make that kid behave Right?
Speaker 2:Lacking support, the programs to help take years to get into.
Speaker 2:It's just this really horrible situation and I know that I have helped a lot of other parents and, like you said, it's usually moms that are coming to me for support Navigate that without feeling alone, without feeling like they're doing something wrong, because, at the end of the day, if you're doing your best, it's all you can do.
Speaker 2:And a lot of these programs that are available government programs, state programs, school programs they're not advertised right, no one knows where to go for help and it's just a whole bunch of Facebook groups and parents again usually moms trying to help and be like this is the link you need to apply for this program, or this school has an amazing extended resource room. If you can get into that district, then they're going to be able to help and support you and it's given me so much hope to see just in the last 10 years or so that I've been involved in the community, how it's grown and how parents of younger kids are not having some of the same hurdles that I did as a newer mom and there's just so much more awareness and people are recognizing their own neurodivergence and it doesn't feel so lonely anymore and I think contributing to that to having other people not feel so alone is probably what makes me feel the best about what I've done.
Speaker 1:That is extraordinary, I love. I love how you have taken the experiences that you had and said how can I pass it along to make life easier and more welcoming for people who are going through what can feel like some of the most isolating times. I mean parenting young kids can feel isolating in and of itself if your child is the most normal on the planet quote, unquote, right, like if you are going through just the traditional do they sleep or not sleep? I mean it's one of my original iterations in life was going into the mom blogging world. In life was going into the mom blogging world. And I did that because I was in a mom's group with young kids and found myself surrounded by moms who were when was the last time I showered? My kids won't eat their vegetables. My kids are always fighting. I don't get any time by myself. I'm always doing the wrong thing. And this was just a traditional group of women in the middle of a suburb of St Louis, missouri, and it just felt like nobody knew how to adapt to the new normal of being a mom and I thought I want to remind moms my original blog was Extraordinary. Mommy, want to remind moms that what they're doing every day is extraordinary. If your child is going to bed at night and they know that they're safe and they're loved, you win.
Speaker 1:Because there's so many other things happening and we're constantly beating ourselves up, right, adding in the additional layers of neurodivergence, which was not even a word I had heard in 2006, 2004,. Right, because at that point I just wanted to make sure I knew how to prep their heads up. You know, it definitely wasn't something that applied to me at the time. It wasn't something that I had on my radar for my kids, and I can remember at the time, new on Twitter, I asked every single day like what are you grateful for?
Speaker 1:On Twitter, it was one of the things I became known for in the mom blogosphere was asking what are you grateful for? And it would take me hours to respond to everyone. Right, because that's back when Twitter was actually a conversation and because we were talking before about the little things we're grateful for. Right, and I remember a mom saying one time I was told my autistic child would never speak, and today he said, mama, and I mean this is 20 years ago that I was given this response and I thought, wow. This is why I ask right, because we need that perspective.
Speaker 2:We do, and that mom needed a place to celebrate a win, exactly.
Speaker 1:Because that's what I wanted. I wanted to give people the platform to say you haven't? You know, like, maybe you just got a book deal? And someone else said I survived a heart attack two days ago. I mean, people would say some of the most extraordinary things. Some people said my sister's getting married and some people said, you know, like I got out of bed this morning. But I wanted people to have a place to say the thing that they needed to say and that stuck with me. But it was one of the first times that I was aware of the power of an autism diagnosis and also the power that we have as mothers to say I don't accept what you're telling me. My child is not capable of.
Speaker 2:That is an amazing point, and the thing about autism is that it's a developmental delay. It does not mean that development is stopped. It does not mean that they're not capable of growing and learning and changing, and it really does not mean if someone is non-speaking that they are non-verbal Like. There's a huge difference. There's a lot of autistics who are not able to speak, but they are able to communicate. There's a bunch of different ways to do it now Communication devices, a PECS board. There's eye gaze tracking software for them to spell, spell, to communicate.
Speaker 2:There's a lot of different resources now and what you're finding is that these individuals some of them are children, some of them are adults now we just assumed that they were not able to communicate, that they didn't have thoughts they were willing or able to share, and you find, when you can find a way to connect with these people, that they have as much to say as anybody else and they are aware of what is being said around them. And one of the things that I really love to see as awareness of neurodiversity is growing is that the people this is a little tricky the people at both ends of the spectrum right, you have the people who have very high support needs, are getting the support that they need to have these communications with their caregivers, with other people in their lives so that they can have a more engaged and more fulfilling life. You're also finding people like me on the opposite end of the spectrum, who are people like me on the opposite end of the spectrum who are, who have lived a whole life without awareness of our brains and how they work, and we're gaining that awareness from, you know, social media. A lot of it is the connectivity that we've had and the ideas that are being spread. And you know people like me who kids get diagnosed and you're like this is really challenging for me and never stopping to realize that the same thing that's causing my child's challenges is causing my challenges with my child's challenges.
Speaker 2:Right, and no one stopping to say, like both of your kids are diagnosed, hey, karen, got time for a test? You know, no one ever did that. Got time for a test? Um, you know, no one ever did that. Still, I mean, we're we're about 10 years post our first diagnosis for either of the kids, um, and you know it really should be. If you have more than two kids that are diagnosed, someone needs to take a look at the family tree um and the parents.
Speaker 1:Really Okay. Yeah, that's it. That's an important thing. It is that I think people need to hear right. If children are being diagnosed, I wouldn't have known the is there. Is it a genetic?
Speaker 2:component. There definitely is a genetic component. And just to share a little bit more about my family, I have Ehlers-Danlos syndrome, which is a type of genetic collagen disorder. Unfortunately, I passed it on to both kids unknowingly, and autism and Ehlers-Danlos syndrome kind of go together like peas and carrots and I don't fully understand the connection. I don't go into the medical side of autism support or diagnosis because that's a minefield I don't want to participate in. Yes, so anyone that has hypermobility issues has a family history of weird medical symptoms that seem unrelated. But you just feel like you come from a family of very unhealthy people and if folks in your family start getting those autism diagnoses, take a look because there's definitely a genetic factor going on between autism and Ehlers-Danlos syndrome and several of the other neuro complex, neuro spicy diagnoses, other neuro complex neuro spicy diagnoses.
Speaker 1:That's really interesting. I, these are things I, I I don't know Right. But to your point about social media opening these doors, I mean these are so many of the places that we're learning so much about ourselves and it for me, it was a lot of putting together all of the symptoms, the symptomology, and that drew me to say wait a second, if I have all of these and that adds up to a diagnosis, then you know, I go to a doctor and I say okay, and the doctor says, well, yes, danielle, and I had no idea, you know. And it was interesting because my fiance, when I went to him after going through this process, he said I knew on our first date and I said, well, I mean, come on now, I okay, I had no idea.
Speaker 2:Right, we're often the last to know, which is funny. And then the flip side of that coin is then you look around and realize that the only friends, the only people you've ever really gravitated to, are other neuro complex or neuro spicy people as well, which is wonderful because you feel seen and comfortable and at home with them. But it's also difficult because we are all struggling right to raise our spicy children and to navigate life with the ups and downs and challenges that unfortunately come with trying to navigate life with neurocomplex challenges. So it's, yeah, it's, it's like a wake up call, like you're in the matrix or something and you know taking the other pill and all of a sudden you can see all the things.
Speaker 1:But what would you say to a family? So I had a friend who his son was recently given a diagnosis and it felt devastating to him. What would you say to someone? Because my one of the things that I tried to say was please, don't allow a diagnosis to feel so fatalistic. I feel as though it's not as limiting as it sounds, as limiting as it sounds, Please. And I, neither of my children, were diagnosed with anything young, but it felt as though, I mean, he was crushed and I don't know that I had the appropriate verbiage to tell him. I kept hearkening back to this woman who had shared this moment with me online and I thought don't let the doctors limit what your son is capable of. Don't let them tell you what he can do. And so I I wanted to allow you to be more appropriately verbose in your encouragement.
Speaker 2:The number one thing I would say is it is absolutely okay to grieve and to be sad for what you assumed would be their life, because parents have babies, assuming they're going to be healthy. They're going to grow on the path of traditional childhood to teenagehood, to adulthood, and anytime we deviate from that plan, it can be challenging. It is okay to be sad about that, right, and I think a lot of parents feel guilty for that, and there's going to be a lot of things you're going to feel guilty for. As a parent, your feelings should never be one of them. You can feel whatever you feel. Your actions are what matter. How you respond to those feelings matters. Nailings matters. The other thing that I would say is you have to remember that it is a marathon and not a sprint, that you're going to be in the parenting game for probably a little bit longer than you planned on being actively involved. You may have to be a little bit more hands-on than you wanted. You have now a new full-time job which is navigating therapies and appointments and schooling challenges, and it's okay to look at the totality of that and to be like not necessarily what I signed up for. Take a breath, take a breather and then get your head in the game, because it is what your life is now and there will be times where you feel like giving up and I would encourage you to try to set some boundaries and some rules around what feels good for your family In doing that. This is really important If you ever have questions In doing that, this is really important If you ever have questions.
Speaker 2:The autism parenting spaces are a wonderful place to go for resources, to get support, to get help, to get ideas. If you ever question what you should be doing for your autistic child, the best place you can. There's two really good places. Number one is that autistic child Pay attention to what they need, pay attention to what works, pay attention to what lights them up and if they're not able to kind of give you a heads up on what is working for them, for whatever reason, talk to autistic adults. There are enough places online. There are enough people that are focused on helping parents parent. It's not the kind of work I do, but there is enough people who do that work that you can almost always find a good workaround solution.
Speaker 2:The last thing I would say is focus on strengths-based approaches, right. So don't listen to those doctors that say they're never going to speak. Get them into speech therapy, right. An autistic person intuitively doesn't really often understand what's going on with their body and they like, even now, I can never tell when I'm hungry. You know, is like a 47 year old adult lady who's responsible for a whole house and two kids and a dog and like I can feed everybody else. But do I ever stop and say when was the last time you had food? No, I don't.
Speaker 1:Um, yeah, it's funny, I don't do that at 52.
Speaker 2:So I don't they're going to need help for their whole life in various ways. They're never going to be a fully independent. Now, oh, I say that, and it sounds bad. When I say they're never going to be a fully independent person, I say it in the way of like none of us are ever truly independent. They may need reminder apps on their phone to beat right. They may need someone to help pay their bills, not in the sense of earning money, but in reminding them to do it. They may need total supports the rest of their life. You really don't know.
Speaker 2:But getting appropriate therapy that meets their needs when they're younger goes a really long way towards supporting them. And the last thing I would say is, just because it is the in the U S at least, it really is the only thing that most doctors will tell parents to do, and it's ABA therapy, uh, which is applied behavior analysis therapy. Be really aware of what you're getting yourself into, uh, with that, with any agency that offers that to you, um, it is often not a great choice for a lot of families and I don't think it should be anyone's first approach. It is what insurance pays for and it's what's been studied and tested, um, but it has been very, very harmful to a lot of adult autistics, and before anyone does that, I would just encourage them to look into that a little bit more.
Speaker 1:Okay, yeah, that's good advice, karen. How do you, how do you define hope?
Speaker 2:Oh my gosh, it's so funny. My former therapist and former because she retired we used to have this running joke about hope and anytime I said I was hopeful, something would happen. So for a long time my body, my nervous system, didn't even feel comfortable to hypothesize about hope. Oh, that's funny. Right now, hope feels like good things are going to happen, and it may not be what I want, but I'm hopeful that it's what I need and that we're on the right track for myself and for my kids and for my family, and we're doing the best we have with what we have, and hope just means that better things are going to be out there for us as we continue to just walk this path, doing the best that we can.
Speaker 1:I love that. I love that you've spent time with me. Where can people find you? Connect with you, be a part of this beautiful community you've created.
Speaker 2:Yeah, thank you. It's the self-care support squad on Substack and it's actually karencasosubstackcom and we are excited. I'm kind of changing things up a bit to shift my focus from just helping parents of neurodivergent kids to helping parents who probably also have neurodivergent kids but navigating kind of this midlife transition and managing family relationships on both sides your younger generation and your elder generation when we're not always as well supported as we would like to be.
Speaker 1:You are. You're doing extraordinary work and I am so grateful for the time you have taken to have conversation with me and putting yourself out there and making sure that people are feeling seen and loved and supported, and I, as a mother, that means so much. As a woman who loves to support other women and other mothers, I am incredibly grateful for the work you're doing. So thank you and thank you for being here. I really appreciate it.
Speaker 1:Thanks, danielle, thank you and friends, thank you for spending time with Karen and I today. I hope that Hope visited you well today and that if our conversation resonated, you will turn around and share it with the people you know and love and that you will come back and visit us again sometime soon and between now and then, you will take very good care of yourself. Take care. Naturally, it's important to thank the people who support and sponsor the podcast. This episode is supported by Chris Dulley, a trusted criminal defense attorney and friend of mine here in St Louis, who believes in second chances and solid representation. Whether you're facing a DWI, felony or traffic issue, chris handles your case personally with clarity, compassion and over 15 years of experience. When things feel uncertain, it helps to have someone steady in your corner. Call 314-384-4000 or 314-DUI-HELP, or you can visit dullylawfirmcom to schedule your free consultation.