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Why Autism Moms Never Stop Listening for Footsteps with Libby Hudson · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey everyone. Welcome back to the Inchstones podcast. This has been an incredible run of showcasing as many mothers as I possibly could fit in to talk about their journeys as an autism parent. And I am thrilled. Today we had some technical difficulties. We recorded for like 12 minutes and I had a busted computer and we rescheduled and I fought for it because I could not have made more of a priority to get Libby Hudson here on the Inchstones podcast. She is mom to 18 year old lyric and he and her husband Tyler are fierce advocates for profound autism. And Tyler's platform is what got me to know Libby because we stand so deeply in truth and reality and it's something that his platform and my platform Enshunz will not back down over talking about. And part of that is talking to each parent and towing knowing where the truth and reality lies. So Libby, thanks for being here today.
• 1:02
  Speaker B: Yeah, thanks for having me. And you started me off last session with a tearjerker and I. I cried within the first 12 minutes. So I'm gonna this time into the.
• 1:13
  Speaker A: Just tell me about the grief. We won't do that quite yet, but we will talk about that. So what does your day to day look like with Lyric now and maybe go maybe reflect a bit on how it's evolved because I know that this life is so demanding of presence and it's something that we talked about before. So I'd love to hear what is your day to day?
• 1:35
  Speaker B: Like I don't. I don't feel like my brain ever goes fully to sleep at night. I have a. You know, I maybe sleep at 80% and the 20% is always just on listening to the footsteps down the hallway. Is that Lyric, what would he be doing? Is he going to the bathroom? Did I give him his probiotics? So my day never finishes. I feel like. And my waking is always first thing on my mind. Is that lyric up? Okay, I need to get up and I need to make him his breakfast. And a regular morning looks like always just checking his mood. Like it's a. How hostile is he today?
• 2:10
  Speaker A: How non verbal like. Like barometer almost.
• 2:16
  Speaker B: Yeah. And I. I've gotten so good at reading his nonverbal communications just in his body language, his facial expressions, the noise he's making with his feet, with his. With his mouth. And that sets me on the trajectory of how much am I going to include him into the getting prepared for the day and how much am I just going to do the whole thing for him. But it's getting his. He has the same thing every day so it's very consistent with the expectations of knowing how much bread does he have, how much counting the slices of. Do I have a loaf ready to go when this one runs out? Have I ordered his. Organized his carer to collect it. So there's all the micro thinking in the bigger things. Like you know, that's. I'd say what really puts pressure on a marriage is the micro thinking of a woman's brain versus the macro thinking of a male brain and figuring out for hours.
• 3:12
  Speaker A: Hours. It's so primal. And yet the. And I'm interested at what you. If you felt this way early on having children that are typical. I have a typical developing 13 year old. I think that we are not made to be this wired hypervigilant for as long as women like you and I are with Lyric and then me with Milly and Mac. Like the disorder actually does make the mother have to become disordered in her hypervigilance.
• 3:43
  Speaker B: Yeah.
• 3:43
  Speaker A: Like we weren't. We aren't supposed to do that, but we are have to because of a disorder that's entered our, our, our, our family.
• 3:52
  Speaker B: Yeah. And I, I'd say the hypervigilance peak for me hit when lyric was about 16 when his grandpa died. His brain couldn't process the loss. He would. My. My dad was his best friend at that stage. Tyler was working 70, 80 hours a week trying to provide all the additional supports that were needed. And I was only working a few days a week. And grandpa was the male energy to help help me and help Lyric. And they've got so attached at a really, at the really end of my dad's life. And then he just dropped dead one day. And so there was no preparation, there was no explaining to Lyric. I couldn't put any work into the read this or this is about to happen or anything like that. So Lyric's brain just flipped. He had no neural pathway for loss. We'd never, he'd never experienced anything like that before.
• 4:49
  Speaker A: Right.
• 4:49
  Speaker B: And he. Something changed in his brain, you know, his hormone development. He was at the peak of his testosterone and brain change period of his life. And he didn't know what to do with his grief.
• 5:04
  Speaker A: Yeah.
• 5:06
  Speaker B: You know, imagine a little three to five year old brain.
• 5:09
  Speaker A: What was that? What did you like? Because again, I know mothers.
• 5:14
  Speaker B: We.
• 5:14
  Speaker A: You, you obviously were the first and probably the most had the most breadth of understanding of like what that grief looked like. What did that look like? Like what did it. How did it present?
• 5:23
  Speaker B: It's like he. I'll give you this one story. He he just became trapped in this anxiety, this deep anxiety where you could see, he could. He could see his own anxiety, and he couldn't get out of the loop he was trapped in. So his dysregulation, his screaming, his everything, he would just escalate. And that was fine when we were at home and, you know, moms are where kids project their worst self because we're their safe person. So. So he would come at me and he would. One instance, he was just screaming and crying in his room, and there was probably just something on his iPad. He couldn't pause it at just the right spot or something Milly like that, but he would escalate to this level of uncontrollable sobbing, screaming and whatnot. And if I ever tried to intervene, because like a mom, you're sitting here listening to him screaming, you're like, I need to help. I need to do something. I came into his room and I tried to be like, are you okay? He pushed me out of his room, and then he came at me and he picked me up like he was going to body slam me. And then he just dropped me as he fell to the floor. He grabbed his head and he said, what's going on? And I could see the pain in his brain, in his body, that he just. He could not manage all these big emotions his body was experiencing. And a. I. I had no language to explain to him. You've got testosterone in your body. You've got grief. And it's such a complex thing to be able to explain to him. So I just laid on him and put pressure on his body, and he hates me saying it's okay. So I couldn't even say it's okay. So then my body is simultaneously storing so much anxiety and grief and all this loss that I'm watching him go through. So not only did my dad die, but then I'm watching him. So my body is storing all of this at the same time. Fast forward a year or two down the road, and I had a stroke. Because my. I never got that grief and that anxiety and that trauma out of my body. Because then I went on to live with lyrics for a period of time, being so scared of my own son, which is. I hated that transition where he became my biggest threat, living under the same roof while Tyler's working and wasn't being available to be home at the time. And that thrust us into, thankfully, a big change that had to happen in our household.
• 8:10
  Speaker A: What was that change? Because I. I'm thinking about, you know, I. I always like to think of the complexities and the nuance and grief and joy and all these things that nestle closely but are the opposite emotion. I almost wish that typical humans could say, even in that most dysregulated state that lyric had, what is going on? That's exactly what all of us are feeling when that happens. Like, what is going on? Because we. There isn't words for it. I mean, that's such a. I mean, again, not, not to silver line that experience, but that's like encapsulates everything of grief and loss. That one phrase. He nailed it.
• 8:49
  Speaker B: Yeah. And I mean, it's, you know, he's my biggest teacher. I'm always seeing gaps in the where is the language for the ASD community, for these big concepts, for, you know, making new friends or why don't I have birthday parties? Or what is death? And all of that. All of that. So the transition that followed that, and I mean, it was a period of a long six month unpacking of him comprehending and me going to pediatricians and getting him medicated. And that's where we had to put him on antipsychotics just for me to feel safe at home. And I hate the lid, the very false lid, because I just think it is so unhealthy for people not to be able to process out their grief and feelings and all of that. And I. And we had to make a shift. So Tyler, he was like, all right, I'm quitting my job. I'm going to work local where I can be close to home and I'm going to reduce the hours. He went from 70, 80 hour a week to a regular 40 hour a week. But he compressed that into lesser days. So he was still working long days, but because we still all got bills to pay and mortgages to pay. And then I was introduced to a new opportunity where I could work more. So then Tyler reduced his hours more. And so shift came in. Medicating our son, Tyler changing his hours, me working more outside of the home, introducing a carer more at home. You know, that feeling of guilt that then follows the you think you should be home caring for your son and. And now someone else has to do it in guilt, guilt, guilt, guilt, guilt.
• 10:34
  Speaker A: Even just hearing you talk about that reorientation to Tyler's reduction of hours, getting him closer to home, condensing it during the day, you upping the hours, that is so resonant. And I hope that everyone listening can like put that as a mirror because even if you're an ally, these Are the things that ha. That happen in families like ours all the time. And typical families of typical children, they don't have this urgent sense that something needs to drastically reorient in a way that is honestly life or death. I mean, the body I, you know, does keep score. And the fact is that you had to make such radical changes. That's what also, I mean, it pushes. It pushes the cusp of these kinds of conversations over the edge. Because on top of everything else, now you had to do make a thousand more choices just to even get back to like maybe a status quo. Like what even is that right? And then you're every. Every choice is just hanging on on a hope.
• 11:47
  Speaker B: Yeah, I. Tyler. I haven't read Tyler's book in full, but he was reading the snippet where he talks about what he's titled. The Bathtub of Separation. That is a weird title. But when you read the chapter, it'll make sense.
• 12:03
  Speaker A: Okay.
• 12:04
  Speaker B: We had a pivotal time where we. I was discussing separating from him in order to get Lyric what he needed. And Tyler, you know, he's so. He so loves just deep connection. He's always seeking out deep connection. And I, in my mom mode is just trying to do the right thing for my son, which looked to me like moving to a place that had better support systems. So Tyler knew he had to do a big change. He had to say goodbye to all the money, the overtime, the everything for all the delicacies that we like to enjoy in life, to be able to sacrifice in a way that was needed at that time. But if. And that's what I love life, you just. You just have to live with open hands. You have to let things flow in and flow out because you never know what it will lead to. If Tyler hadn't made big change, which required me to assert what I needed in a way that felt aggressive to me because I never say what I need. I just keep going and I just keep doing the thing that everyone else needs until I stroke. And then I wake up and I go, that's not actually working for me. I don't want to do that again. So what do I need? And I told him what I need. There was huge conflict about what I need. And then he made the shift to change his life, to be able to support me in a way that I felt safe and supported. And then if he hadn't have done that, maybe he hadn't have had the time to enter this social media life that he felt he had the capacity to because he wasn't working 70 or 80 hours a week over here. And he could look and see the problem and address it in a way that he had that pizzazz in that way that he does that.
• 13:58
  Speaker A: That's what's so freaking cool about this, is that like that, like you said, that trajectory of like the conflict that came from having to even broach the subject. And then what I can only imagine was a series of so many different events for him to then leave and re. Establish somewhere else. And what that then expanded for you and then expanded for him too. And that, that. Those are things give me that, give me great pause because that's the. That's the breath, that's the faith over fear in all of this. It doesn't make it less hard. But it goes to show that I'm a very big fan of Bruce Lee and his whole life about the flowing and being like water, his whole thing. His daughter wrote a book called Be Like Water. That water always will find a way through. It always finds a way through. I'm unfortunately realizing that. Cause I had a flood in my home. So I'm realizing that water does always find a way through. But you know, I'm trying to use that as like, maybe this is a. This is a way of clearing things out.
• 15:02
  Speaker B: Yeah.
• 15:02
  Speaker A: But it's just through water. Water is the best example for that. And that I'm. Thank you for sharing that because oftentimes we do collapse onto pushing down our needs. And it's not to say that the journey to getting what our bodies and minds need is going to be easy. And that's. I think that that sometimes is what's missing in a lot of healing journeys is the thought that, okay, once I make the decision, shouldn't it be easy now? Shouldn't that be the clearing point now?
• 15:34
  Speaker B: And I think if we hold onto this, there's just one way it makes. It makes. It makes you unmovable. And Tyler and I were just having a conversation with about this this morning based on the news we were just watching that, you know, you have to be flexible in your roles in the home and in your roles in the relationship. And you have to just, you know, this is just seasonal. If you ever think something is this way and this is the only way, you just never survive. You never evolve, you never adapt and you don't change. You have to be so forward with life. And if he had not changed that, made that move, it wouldn't have allowed me to, to say yes to this opportunity. And I would never have dreamed, you know, two years down the road that I would, I would be so incredibly happy and so feel so fulfilled because I brought this confrontation to him and I said, these are my needs, and this is what, what I need. And now my mind is blown, and I get to now sit across from parents every day in our shoes or similar shoes that are walking into a clinic going, I'm up to here. I'm about to walk away from my marriage, from my partner, from my kids. Like, I will just leave everything because the responsibility is too much. And guess you know, everyone that comes into my clinic, Moms, moms, moms, moms. Where are the dads? They try to fix the problem, and when they realize they can't, that's primal.
• 17:18
  Speaker A: I, I, I, it's, it's so hard to. And I know that you and Tyler are simpatico in this. Protect and provide and then tend and befriend. Like, that's, that is, you cannot separate that from me and you. We're, I mean, listen, we're halfway around the world from each other, but, like, I want to come over for, like, you know, a cup of coffee tomorrow morning and sit on your porch. Like, that's a tendon befriend. It's so innate. It doesn't matter if it's, it's virtual, it's if it's in person. Like, we as women are so beautifully wired for that, and men are beautifully wired for that too. But unfortunately, I do think it's used against them sometimes in this community because when women hit that, you know, apex of, of about to break, it does tend to find. Want to find a way of who, who can we point fingers at?
• 18:06
  Speaker B: Yeah. And it's so tragic because dads are so essential for they're the ground of regulation. And then there's mom with her softness and her care and her tenderness. And then that makes the best foundation for a regulated human. But people come into my office and they're like, we need this support, and our child needs this, and they need this. And then I go into and what does home life look like? And they just explain home life, and he doesn't engage and he's a drinking because he can't deal with the problem. And I'm over here criticizing him and telling him what he should be doing and he's not doing, and da, da. So the foundation is not right. So it doesn't matter what scaffolding of supports we add up here for the child. If the foundation's not right, it's not doing the work.
• 18:56
  Speaker A: Yeah. And it's I, I think, I hope. I don't know what your algorithm shows you online on social media, but, but I have a, I, My mind is flooded these days about nervous system regulation and I, I do have, maybe I hang a little bit of a hope on that. A positive aspect of this global village we sit in on online is cueing people into that. Like you cannot outrun your nervous system. You can complain, you can bring in more support, you can pay for specialists. I mean I, I find it very interesting in the population that I, of women that I do one on one things with or you know, in the community, you cannot, you could be a affluent, very wealthy woman with a child with profound autism and have a person on a, on the totally opposite end and they will present similarly. And I think it's one of the most beautiful reminders to all of us that money and wealth and things and paying for support truly does not matter. It truly doesn't. I mean there. If you are not grounded in finding what makes you become the best version of yourself for your child and for your husband and for your family, everything else will fall by the wayside. And I, and I wonder if the conversations online will get closer to the epicenter of that specifically for families like ours. Because you're hitting, it's. You're, you hit the nail on the head. If the, if the mother and father at home and even just the mother as the pulse of the heart and soul, if that is not regulated, there's not a chance their child can be.
• 20:28
  Speaker B: No. And this, kids are so perceptive to non verbal communication and, and the vibe in the home. The kids are like, I like to think kids are the thermometer. Parents set thermostat. Kids are the thermometer. We gotta read their behaviors based on what parents are doing at home. And parents so often they go, okay, we're married and I love our life or we're, we're in this dream and we set the thermometer and then we walk away. And I'm like, no, no, no, no. Tomorrow is going to be a colder day. You need to come back and adjust the thermostat. You can't set it and walk away. But set and forget seems to be the common narrative in relationships. You might have to adjust based on child one's needs in that moment. And then you need to adjust based on child two. And then you need to adjust based on his work is super stressful right now. And there's that constant adjustment. It's a dance.
• 21:27
  Speaker A: It's a dance for all the facts, husband, the wife, the art, if you really think about it, you know, it's coming to it. Knowing that like emotions are a form of art and honoring them is like the mastery of that, of that art, of that art form.
• 21:47
  Speaker B: And you never arrive as an artist. You know, you always have to skill up as you go. Because God forbid if I was my juvenile 19 year old self, still emotionally, socially, I, my daughter's getting so close.
• 22:04
  Speaker A: I'm a sorority girl like the state of Pennsylvania. Like let's, let's. I was not anticipating two children with non speaking autism after being out at a theme party at a fraternity. So. So, you know, that was not in my bingo card lib at all.
• 22:20
  Speaker B: No. Geez.
• 22:22
  Speaker A: Yeah, exactly. Whatever thing you're thinking of, it's that
• 22:27
  Speaker B: any, any marriage, you know, statistically today is on the trajectory for divorce. Any marriage just simply statistics. So then add additional needs onto that and the statistics just, you know, someone called us an anomaly because we are still married. And it takes so much intentional work and it's tiresome. So you also have to be on the other side of the work. The work, the work. You also have to be celebrating and dating and reminding each other the fun time and you have to create those sometimes. And then sometimes you just, you have to be so purposeful to have that tank full of experiences and shared joy and all of those. And that's where I'm very thankful. Tyler's been so intentional about always dating me. He always likes, I don't know, maybe he just hates my cooking, but he always wants to go out for dinner and he always wants to go to the movies and he always wants to. And you know, like every wife ever, I get home from an eight hour day so session in clinic talking about everyone's problems all day and I just want to collapse and do nothing and look like a hot mess and go to sleep, you know. But I know that by putting the fluff in my hair, putting some gloss on, putting the clothes on and going out and having dinner with my man will bring back so much joy to my life in the afternoon. And it's just pushing through that I don't want to, to go. I can, I can go out. I can.
• 24:12
  Speaker A: How many, how many people? I mean I. Not to go like you know, dark but like there. I always remind myself I'm like I am, am I, am I saying I don't feel like it? Because if that's a feeling, right, that I feel like I'm going to be too tired or saying no I get to do this and that. That's like a resonant for me in motherhood in general and also within my relationship. I mean, full disclosure, you know, I am divorced from my. From my children's father. And everything that you illuminated is. Exactly. It's true. I mean, there's statistics to prove it, because the lens of life that you see, given the reality and truth of parenting children like we have, reveals itself very quickly. And then there's. And it's either a launch pad or a sinking ship, I think, rising and knowing that what you can do for a relationship becomes one of the most beautiful byproducts of the stress of parenting a child or two with profound autism. I would never put that stress on someone or on their relationship in a million years. And what it's taught me about presence in relationships is a gift I don't think that I could write or hand over if I could to a mother of typical children. And I don't wish that pain. But I. But that lesson, I would never give it away. I would never give it away.
• 25:37
  Speaker B: Yeah. Talk.
• 25:38
  Speaker A: Talk to me about the really early days. I've. I've been talking on, you know, with all these moms about what was your immediate feeling post diagnosis? And it's become this thread on these interviews with moms this month. They all. They all say something different now. Now, a number say one word, but then the other half say something and then something. So I'm interested. What was that first emotive feeling for you post diagnosis with Lyric?
• 26:06
  Speaker B: I think, because my pediatrician had set me up for. In the wrong way. He was a lovely, sweet old man. And this is nearly, you know, it's 18 years ago, so you gotta go way back in time. And he was like, no, your son's not autistic. If I was going to diagnose your son autistic, I'd have to diagnose everyone in his kinder class. And you thought, probably that's true now. But he. Autism was such a new word back then, you know, And I didn't even know what it meant. I thought it meant he was retarded or something like that. And so a specialist came over to my house to do the assessment. And I'm just watching her. She's just playing with him. I'm like, okay. Then I go. And I'm like, okay, expecting. I'm like, so he's not autistic, right? Because, look, he was playing with you. He was like. And she's like, yeah, he's definitely autistic. So I'll just file this paperwork. Like, it was so obvious. And I was like, I. I just went into shock almost. And then. And you know, that shock, you just keep it together. Keep it together. And I feel like you say that on repeat for the remainder of your life.
• 27:13
  Speaker A: Just keep the rest of the days for every 24 hours cycle in perpetuity.
• 27:19
  Speaker B: But then I think, you know, she left. And then my mom came into my kitchen. She came over just to see how it went, expecting the same answer I was expecting. And I just collapsed in her arms and started crying, because that's what moms invoke. They invoke the weakest part of us to just come undone.
• 27:39
  Speaker A: Libby, you should be very, very proud of the children that you're. That you are raising. It's not over yet. It's not over yet. But you and Tyler just do such a beautiful job, and I am thrilled to share more of your side of it because we see so much and hear so much in an incredibly impactful way from Tyler, and I think that you are the yin to his yang. And I can see so much that the pulse in which and what you provide to your family. I'm gonna be showing up in Tasmania when it turns warm. I keep saying I'm like, I'm gonna get to that farm one day, man. It's the last thing I do. Libby Hudson, thank you so much for being here on the Instance podcast.