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Who Plans for This? A Father's Life with Profound Autism | Mike Hanner · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to the latest episode of the Inchstones podcast. I've been fortunate enough to really focus and give a spotlight to a lot of different fathers of children with profound autism. And today is no different. We're going to talk about the realities and the parts of this life that don't always make it into the larger conversation. And today's father is Mike Hanner, corporate risk management professional autism advocate, and most importantly for our conversations today, he is a dad to a non speaking 8 year old autistic boy who also has apraxia like Milly and Mac do. And Mike brings a really interesting perspective because his professional life is literally built around understanding risk. Right. Anticipating what could happen and preparing for uncertainty. And you know that that's a word that I use a lot here and becoming comfortable in uncertainty. But for those of us raising children with such significant support needs, there are parts of life that you simply cannot plan your way out of. And today we're gonna talk about Mike's fatherhood. The difference between, you know, intelligence and motor ability and really the vulnerability that comes with being unable to reliably communicate with our children and where families like ours fit within the larger neurodiversity conversation. So, Mike, I'm really, really glad you're here and welcome to the Inchstones podcast.
• 1:15
  Speaker B: Yeah, thanks, Sarah. It's awesome to be here and, and be a part of Inchstones and be on the podcast today. Appreciate it.
• 1:21
  Speaker A: Awesome. Of course, it's pleasure to host. Before we talk about advocacy and all the things that you have done in your world and more autism more broadly, can you tell us a little bit about your son and what you wish people most understood about him before they knew anything of his diagnosis?
• 1:42
  Speaker B: Man, gosh, that's, that's almost an emotional, I have an emotional response with the question, but a good question. Man, my boy, he was, you know, he hit all his milestones for the first couple years. It's really tough to talk about that actually, but I will because that's, that's important for all of us as parents to lean into that. But yeah, he, he literally could sing, dance, spoke 50 to 100 words, was hitting his milestones. Even today. It's really difficult for me to watch videos back in that day.
• 2:17
  Speaker A: I don't think you're alone in that.
• 2:19
  Speaker B: Yeah, yeah. And, you know, everyone manages that differently. You know, I'm not one to, to put, you know, my head in the sand and, and let time pass by. I like to take ownership of the, the challenges in front of me personally and professionally. Too. But he was such. And he still is. He's just locked inside of his body right now. But he. He's such an amazing kid. His name's Kingston and he's my wife and I's pride and joy. Excuse me. And you can tell there's a lot of pain still there. And the reason why is because we're fighting that journey every single day. And when I talk to him, especially after watching and being exposed to Biomed and spellers and some of the things that are a little less traditional with our doctors that we talk to, I started to realize that just because out on the outside that he went, and I'm digress a bit here, but he regressed right around two, two and a half years old, following, following a few visits to the doctor and. And we started to ask questions. And within a year, he didn't talk again. And that's profound. I mean, that's. That's not. And unfortunately, it's not unique to us. There's a lot of families, including yours, that have been through something similar. And so there's. There was. Took a long time for me to realize and remember who that boy was like. I can still hear talk about, say the word turquoise, want water and things. And today I. I'm. It's noises and grumbling. And it took a while to realize that he is telling me all those things. He just can't get the words out. And so he's not an aggressive kid, even though he's had some self injury, but it's all been self. He's never been outwardly aggressive.
• 3:59
  Speaker A: Mm.
• 4:00
  Speaker B: Just one of those kids where when practitioners meet him, therapists, family members, strangers, he's got this aura about him that is very unique where he's very soft. Gentle giant is what people call him because he's. He's not a small kid. He's in like the 105 percentile of his height and weight. And he's a. He's a strong kid. Eight years going on like 15 in terms of strength. Right. And so dad's got to shape to keep up with that madness, but he's just a good kid. And it breaks my heart every single day to know that no matter what I can throw at what I throw at this, it never progresses fast enough. But that doesn't mean there's not progression. You do have incremental progression. And as a parent, that's probably the thing that I discounted and overlooked more often than anything was the small wins. And so while you can tell I'm still battling and, and managing a lot of those emotions. You, you, you can't sulk for long. You just gotta lean into it and get it done. And that's how I've operated my entire life, for the most part, right post, post 25, let's say.
• 5:02
  Speaker A: Yeah, well, I mean, you're obviously, you're not alone in, in that thought because I think any of us that are, you know, geriatric millennials, we grew up thinking that all these big strides were going to be what just happened for us. That wasn't these small little, what I call Inchstones wins, let alone in parenthood. Right. And I, I, I know that for you, I love that you brought this up, that part of you, part of this journey was discovering this biomedical lens. You know, what do you think when, when you, when you realize that you could not that you could ask, like, not only like, how do we manage, you know, this symptom or behavior, but like, what is happening underneath it? Talk to me about that.
• 5:44
  Speaker B: Yeah, you know, we, gosh, I had, it was, ironically, it was in my professional career as a group health and insurance consultant and risk manager and which is ironic, I am literally out there creating from scratch group medical health care plans, employer sponsored plans for the 174 million Americans in the United States that are on these plans. And that's what I'm doing for a living with a napkin, start with a napkin. I don't go to carrier markets and do just, you know, take whatever they tell us. I'm literally sitting down clients going, what do you want your employee population to have in terms of health care? So it's extremely ironic that the system that I'm inside of right now to help navigate the cause and effect and the trials and tribulations and the challenges that my son's had, they've come at a crossroads more than once in this last five, six years since his diagnosis back in 2021. And I was introduced to the executive director over at Med Maps and that opened my lens up to the possible causes as opposed to focusing just on the symptoms. And as a parent that has got the tailwind, I would call myself a dad warrior, even though I think there's a lot of hidden silent dad warriors out there. But I just became on fire about the issue. So, in fact, on the other side of this camera right now, There is a 5 by 8 foot whiteboard that used to be a TV where sports center in the news would play. Well, I worked, I ripped that down and took off the degrees off the wall and Put a big whiteboard on it, and it looks like a forensic file, Detective, you know, like the giphy
• 7:22
  Speaker A: of that guy, where he's like, you
• 7:24
  Speaker B: know, it's absolute insanity. It's. It's got treatments, tests, therapies, diseases, diagnosis. I've checked things off, I've marked things, they're color coordinated. I've got four whiteboards in this office, and all of them are dedicated to my son. And it used to be that these areas were dedicated for me and things that I wanted in my safe space in the office to go build. And what's funny is you go through all that, right? You go through the kind of the stages of psychology, you know, denial and anger and grieving and acceptance. And I know I've missed a few, but bargaining, I can't remember them all, but when I was introduced to the biomedical side of this, it didn't matter at the time whether it was right, accurate, real science, not real science. What mattered to me is that there was another option because I kept hitting the wall in allopathic western medicine, and there's nothing. I think there's a blend of both that solves our family's issues. I don't think one's better than the other. I think it's a combination and approach. But that, to answer your question, I was introduced by a friend who could see the pain and could only empathize, had never lived it. And quite frankly, I was on the beginning of that journey and I hadn't had my tribe yet of Sarah and the equivalents out there who'd been doing this for a minute already. So those parents out there who are listening, who are in that season of life where they've just got their diagnosis or they're a few years in and it feels like just yesterday, but in the same breath, it feels like it's been a lifetime and it's only been a few years. You have to surround yourself with people who understand where you are at, where you want to go. And sometimes the people closest to you with the best of intentions aren't those people to help you get there. And that was a big. A big awakening for me. And by the bio community, case in point, helped open up more of those channels of people. Because where do we all go once we start to learn about potential solutions for our kiddo, to help them get back on the curve of growth and happiness and regulation and all those things? So, yeah, that's my long answer.
• 9:18
  Speaker A: Well, there's. There's so many ways to go. I mean, one being I'm so glad that you brought up that it's a combination of both this conventional medicine and Biomed, because I think that those of us that talk openly about that somehow get siloed into this group or you know, polarized sect of parents who. They think that that's only, that's that we are now, you know, controversial and conspiracy theorists and all these things and what we're saying. And I know that you just hit on this. Is that like it's, it's. Yes. And it's both. You know, there's a, there's a medical model that should be able to integrate both. And I'm so glad that you hit on that because I think it's also a main, a main pillar of Incheon, which is that there's no one, you know, answer or there's no fixing. There's just what I like to think is how can I, or how can you as a parent be the leader to facilitate greater connection with my child, period, Period. And I don't think that I, that there's a great enough, greater enough spotlight on that duality. Right. That it can be. Yes.
• 10:21
  Speaker B: And I agree. Actually, I think that historically, and this has become pretty evident to me, and I was guilty of this too, is we would go to our physicians asking for answers. Seems, seems logical. Right? It, if, if, if there's parents listening or, or parents in this situation, they need to be collaborative, not instruct. Order taking is not going to help your kiddo get farther, faster.
• 10:49
  Speaker A: That's right.
• 10:50
  Speaker B: And I feel so strongly about this because I, you know, I've got a lot of working in the space. I've got a lot of friends that are physicians and they're medicine. They don't have all the answers. They may have been classically trained. These do. Some on the other side of the fence is, you know, integrated functional medicine, naturopaths and everyone in between, they all can live together. But I think you have to collaborate with these folks because they're just trying to help. They don't a lot of times, especially with cellular health and nutrition and dietary requirements and then started to get into old genome sequencing and the emerging sciences around that very few people. In fact, if, if somebody in the medical space says this is the solution for everyone, you have to do this, I generally will run. I, I'll, I'll review it because like yes man with Jim Carrey the movie, I'll say yes to pretty much everything when it comes to my son because I don't want to rule out or leave anything on the table. But I almost always will not believe somebody goes, oh, if you just take this powder, your kid will stop. You know, start talk by next week. And I honestly, I hope for the sake of authenticity that those families who post those things or share those things, that that really did happen for them. But I can tell you that that 5 and 10%, maybe 15 of the profound. And not to discount the other large chunk of folks who have autism diagnosis, because it's all relative. Whether the pain is profound or not profound or the situation, it's all relative. The pain we all go through is relative. You know, you gotta collaborate with the doctors. You have to try things out. You almost have to become like, I, I, I joke with my wife that I should have went to medical school, not business school. But then as those words come out of my mouth, I'm thinking, but then I would have been trained to think a certain way, and I wouldn't have looked at things more creatively and entrepreneurially.
• 12:40
  Speaker A: That's right.
• 12:41
  Speaker B: Different paths. So, you know, I can't, I'm trying to talk out both sides of my mouth here. But that, that is, well, no, that
• 12:47
  Speaker A: makes a lot of sense. I mean, I'm glad. But it also affirms that the lives that continue to happen for us, in hindsight, we can talk about those, the alternate universe, alternate reality of what that would have been. But, you know, the position that you're in right now, at least from my angle, is that you were in the best, best position to help your son because of who Mike is right now, today.
• 13:08
  Speaker B: Yeah, I'm, I'm, I'm. There's an asterisk that says, I believe I am prepared. Often I am interrupted by a circumstance. It reminds me that I need to work harder and try harder. I think that headwind that us as parents get, we need to listen to that and not get stuck. And I'm guilty. You know, we all are guilty at times. You can have massive tailwind of motivation and be gunning for what you think is the right solution for your kiddo. But if you're not, if your head's not on a swivel listening to the news, and I don't mean just regular national news. I'm talking about those industry podcasts, the informationals that are out there, the small groups that are growing in size rapidly right now that are about these things, you know, metabolic health, mitochondrial health, neurological health, gut detoxing, you know, all the things and everything, you know, that, that allopathic medicine brings too. You know, EEG scans, and blood and you know, you're intent, you've got to go through and flip all those rocks over for your kid. And if you get too narrow, focused, you will miss a lot of those opportunities. I've got a whole list of things on the board in front of me that we're not ready to do yet, but I know that those are things we need to explore because I don't want to make my, you know, I want to, I want to give my body, my, my son's body a chance to, you know, go through this more naturally and not just bombard him with various tests and things. So it's, it's such a balance and it's, it's very difficult.
• 14:34
  Speaker A: Well, this, this life, you know, I believe that every human as you, you know, as we get to age, we should be staying perpetual students to life, right? Never, we never stop learning. And I'm sure you'd agree that, yeah, this is a, this is one life that I will guarantee that you will never stop learning and never stop seeking out, you know, answers to questions and, and if, if you're lucky enough to, to stay as curious as you can. Because I think when, when your child does not communicate or is a non speaking autistic child and they can't reliably tell you how they feel or if their stomach hurts or they're dizzy, that changes the threshold for investigating. Right? That, that's a completely different way of parenthood, curiosity to development than, you know, I've got a typical 13 year old daughter that that threshold was, was radically lowered and expanded due to my, my children with autism and apraxia. So I think you're right. Like there's, there's just constant evolution and constant questioning that should not be seen as a detriment to this life. It should be seen as we get to ask these questions. How great is it? And your son will present so differently than mine and every other child, but we get to ask these questions and I think that's what the beautiful part about, you know, root cause medicine is, I hope in our lifetime starting to reveal.
• 15:54
  Speaker B: Yeah, yeah, no, I completely agree. I was just thinking of something. I wanted to ask you a question, if you don't mind.
• 15:59
  Speaker A: Sure.
• 15:59
  Speaker B: I, yeah, I'm gonna turn the tables here. So you know, I'm thinking of the parents that are listening and people in this scenario that are listening. And one of the questions that I get a lot from these parents are what doctor? I do go to a great doctor, who do I talk to? And it's not as easy, like it's not an easy question to answer. You might have the person you go to. But if I would have asked you, Sarah, that question five years ago versus three years ago versus right now, you may have some continuity, but I mean, what's the answer for you in that question? Do you tell a parent this is the person I'm talking to now? Or do you say, do you let them know, hey, this is kind of the steps that you have to follow, because I found that. And every, every parent's in a different scenario. Is they. To get comfortable with one doctor and then you're limiting the scope because this is a emerging space, or you have a lot of false starts because you're trying different things out until you can find the right cultural fit and the right medical fitness. What is your answer to that? How do you address that with parents?
• 16:53
  Speaker A: So I literally got asked almost this exact question on a panel a few months ago, and I, I, it's, it was from a totally different presenting parent than you. And it's an answer that I love to give because she was asking me something so specific. She said, I really, really believe that my son could benefit from, she said, chiropractic care. And I want to do more, more intensely. And I just feel like with his digestion, the, the alignment, you know, process of it. And I, and she goes, do you, could you just send me, can you give me a name? Is there someone that you've used for your children? And I looked at her and I said, I can, but your, like, power, this like Joan of Arc stance that she took in asking me that question. I said, you know, exactly the right answer. There is nothing nor a practitioner that I can specifically tell you to go to, to get the answer that you are deeply, intuitively trying to seek right now. But the fire behind what you're looking to gain. Yeah, try it and try it times a thousand. I, in that, in her same position years ago, didn't have that same fire. I didn't have. I was much more on a journey of, you know, AAC and communication and, and down the rabbit hole of, you know, apraxia and oral motor planning. So my answer is always like, if that's the fire lit, come come to me with your list and we can talk through, like, where and the regionally, what makes the most sense. But to actually say, oh, it's this person, that this, it's this person, it's that. I don't think that any even advocate or, you know, influencer in this space can give an Answer to satisfy what those parents and their orientation to their own child could actually give and who they. And who they come up with. But, you know, obviously medmaps and what they're doing, and especially under the, you know, guiding light of John Gaetanis, who I think is just such a gift to our community, we are going to see strides from what medmaps does for expanding this population of physicians so that it isn't people throwing, you know, darts at a board, that there is a much more, you know, clear way to go about doing this.
• 19:02
  Speaker B: Agreed. And I agree with Dr. Gatanis. He's an incredible guy, incredibly human, obviously.
• 19:06
  Speaker A: Incredible human.
• 19:07
  Speaker B: Just a really, really, really great resource to have him and anyone around him. You know, they're all going to have a similar kind of approach and focus. And there's a lot of those little hubs that families can find. You got to find your tribe, you got to find your people, you got to get in there, talk to the doctor, get along with. Just because I get along with John Doe over here doesn't mean you are. So you kind of have to explore what.
• 19:27
  Speaker A: Yeah.
• 19:28
  Speaker B: Like. And what that rhythm looks like.
• 19:29
  Speaker A: And you have to know as a parent, not to interrupt. You have to know as a parent what your energetic capacity is for that too. You know, you and I are similar like we have. I have a lot of energy for this space, but that is a very, very conscious curation of that for myself. Not everyone presents or has that same hat that they wear in parenthood or what they're responsible for. So people really have to know what their, you know, what. What. Where their limits are on it because it's truly an ultramarathon times a thousand.
• 20:00
  Speaker B: It is a thousand percent an ultramarathon. It's interesting. You talk about capacity and limits and, you know, you could have two people, two parents sharing a son or daughter with autism and. Or any special needs for that matter. And that pressure and that challenge that. That opportunity or problem, however you want to frame that up, right. The outcome both parents can share, but the input and the skill set and the willingness and. Or ability or tools to. To navigate the pressure to get there to the solution they share can be so drastically different that it almost certainly creates friction in a unified family. When a family's not unified on how to get there and. Or do not share the tools, understanding your resources, it creates additional friction. That topic is not talked about enough because it's so central about relationships. We're talking about husbands and wives, wives and wives, husbands and husbands, whatever that are sharing children, that are. Are raising kids, they have to put their oxygen masks on to help their kids with their oxygen. And that's kind of the analogy. When that's broken and you look past that and you move into solutions for your kiddo, you're missing a huge step. But even then, if you go to that first step, it doesn't mean you're going to have the outcome that you want. You and I both know that. And so I just would challenge parents to. Not just. Just because it's easy to run with it because your other person isn't involved, don't just run the other direction quite yet. See if you can teach them, bring them to the fold. If you're fortunate enough to have a partner or a significant other that can meet you where you're at, then you've been blessed synergistically by more than most because this is a very challenging situation for the family unit. And as you know all too well. And so I would. I would. I would task parents with. At least explore that before you dive into it, because otherwise you'll inevitably alienate the other parent. And. And that can hurt your kiddo too. But at the end of the day, like, I can't. Like, I have to. I have to meet the opportunity where it's at, how I'm prepared in life. And I'm. I'm gonna try to bring my wife, for example, with me, and in many cases she gets there, and in some cases, I don't get where she's at, and we have to kind of hammer through that. But most. Most families I talk to, you know, and we're not impervious to this, you know, have significant challenges in that space that actually can hinder the growth of the kiddo. And my heart breaks for the kiddos. And I know those parents heartbreaks too, because hearts break too, because they want that to work. But who planned for this? You know, nobody.
• 22:39
  Speaker A: So true.
• 22:40
  Speaker B: Sarah. I. I had a completely different idea.
• 22:42
  Speaker A: That might be the name of your. That might be the name of your podcast. Mike. Who plans for this? Right? Like, I mean, you know, from insurance and life insurance to.
• 22:51
  Speaker B: To.
• 22:51
  Speaker A: To profound autism. Who plans for this?
• 22:53
  Speaker B: There's no risk management strategy that is associated with, you know, you know, is the 2.2 kids and the white picket fence.
• 23:00
  Speaker A: That's right.
• 23:01
  Speaker B: Some. You know, that's so. Yeah, I. It. There's. I think avoiding the landmines is probably the most important thing to do right out of the gates after a diagnosis more than trying to find the answers because nobody has all the answers. But a lot of us have a lot of the landmines because we've been there already. So if I was giving a parent advice or anyone going through this scenario right now, I would say, look, I know you want to put this in a box and solve it. Trust me, I have undiagnosed. I ocd and I want to solve this, too.
• 23:31
  Speaker A: Well. And I always say that that's a primal, male beautiful attribute. Right. Like you want to solve a father innately a male father.
• 23:40
  Speaker B: Yeah.
• 23:40
  Speaker A: That is. A father has to agree. You want to serve. That's what you want to do. To serve. You want to fix it. So to have to. To have to. To have to, like, put that in, like, somewhere else and know that you can't fix it through a series of 10 steps has got to be guttural from a male perspective.
• 24:02
  Speaker B: I've never had to put a permanent whiteboard up to solve any issue.
• 24:05
  Speaker A: That's right.
• 24:06
  Speaker B: Ever.
• 24:06
  Speaker A: That's right.
• 24:07
  Speaker B: And now I have three in my office dedicated to this. Right. And that board never gets empty. It's just being replaced with new ideas. And so, yeah, it's. It's a forever journey. When I say a forever journey, I don't want to discourage families who are hoping that the outcome is better because that happens, too. But you have to prepare. This is the reason we drive around in a car with an airbag. It's not because.
• 24:36
  Speaker A: Right, right.
• 24:37
  Speaker B: In an accident, we are going, hey, look, in the off chance that I get in an accident, I want to make sure my face and my body are protected and so I can continue to live the life that I dream of. Right.
• 24:46
  Speaker A: That's right.
• 24:49
  Speaker B: That are holding onto a thread and just trying to get some answers. Just. Just try to avoid the landmines right now. Make sure you have your airbag on. Expect the worst, hope for the best, pour all your energy into the positive outcomes and grab your tribe and have them wrap their arms around you. And listen to the Inchstones podcast. Go through every single one of those. There's a lot of resources. That's not a. You never asked me to plug in. So that's. But it's great stuff, right? You've got Len in there who talks about parent support and all types of stuff. I've met with Len. He's an amazing guy. There's just so many things you're not going to get on mainstream news that you can find in a podcast like yours or out in the open domain. If you just look around, just know that Failure is a trickster, and it has a keen sense of tripping you up when you're just within reach of success. Success. And that came out of Think and Grow Rich, Napoleon Hill's book that I read years ago. And I read it more than once. And that's one quote. And I didn't quote it exactly, but it's close that I remember every single time I'm faced with that, the pain and struggle that we all go through. And I remind myself that most people give up right now. Yep. My son, your daughter, our kids deserve better. And in the end, if I don't live in that mental space, then how could I possibly help my kid have the opportunity to do that for themselves in the future? And so that's. That's. Every day I wake up. I. It's. You can't get that out of my monologue or narrative. It's just who I am now. It's. It's. I'm a different guy five, six years later. And I know you're a different mom and a different woman now, and in a much better way. A more. Sure, a lot more pain, a lot more struggle, challenge, but very, very way more balanced and way more without a doubt.
• 26:36
  Speaker A: You know, I recently saw a comment on a podcast that I was on, and the mom said, you know, I'm so glad that Sarah is, you know, feeling like this has revealed to her the strongest parts of her personality through her advocacy. But, you know, our poor kids are XYZ. And I thought to myself, this is where the inches podcast lens work. Absolutely the work of, you know, Dr. John Gaetanis, you know, Honey Renace, Elliot, Med Maps. Like all these people, we're not saying that who we are because of our children is our best lives. That's not it at all. It's that I never realized the strength in my own identity and humanity until my children were given to me. Mike, I'm so, so thankful for this conversation. There aren't nearly enough dads I wish could make more of you. We don't have all the answers, but our job is to notice and to notice the inch zones, to keep asking the questions and to find the people, the practitioners that are willing to get curious alongside us, because once you do, that changes the whole game. So thank you for being one of the dads that keeps asking, and I'm so grateful that you joined us today
• 27:41
  Speaker B: here on Inchstones Yeah, thanks for having me, Sarah. I appreciate it.
• 27:44
  Speaker A: Fantastic. Well, until next time, everyone, here on the Inchstones podcast,