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Curious Presence: Parenting Without a Map in the World of Severe Autism · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:01
  Speaker A: Welcome to the Inchtones podcast. I have a dear friend of mine, Sarah Antonato, who is a soul sister, a parallel life liver, strong feminine female, energetic and wonderful life leaner inner, which I think is. I hope that someone can describe me like that as well. I think that you really do show up every day to try to become the best version of yourself, not only for yourself, but for your family too. And it's a pleasure to know you and to learn from you.
• 0:32
  Speaker B: Thank you. And a life leaner inner is the coolest description I've ever received.
• 0:38
  Speaker A: I'm all about verbalizing with the real truth.
• 0:41
  Speaker B: Yeah, the real truth. And something I've realized in being a life leaner inner very recently is sometimes that requires you leaning out of other people's journeys so that they can learn their lessons, whether those are your children or your spouse or your parents or your friends or whoever. Sometimes you just gotta lean back and say, have at it, guys. Love you. Yeah.
• 1:07
  Speaker A: We cannot change anyone unless they wanna change.
• 1:11
  Speaker B: Amen, sister.
• 1:12
  Speaker A: And specifically, when it comes to sharing worries or fears for others, I think it's energy that is so displaced because it could be put back into your own actual life.
• 1:27
  Speaker B: Absolutely.
• 1:30
  Speaker A: You and I realize our energies in a way that I think maybe moms of typical children don't. And that's okay. We have to, I think, in order to show up as our best selves. And everyone learns those lessons differently.
• 1:42
  Speaker B: You know, that's right. For better or worse, we have children who will let us know when we're not being fully present with them. And it requires us to check in with.
• 1:50
  Speaker A: That's so true. So true. The, you know, we listen. You and I could talk for 48 hours and then do a sleep deprivation study on us and talking. But I think that is the coolest thing about being a parent to autistic children is they require presence. And that is what we are all. If everyone's getting really quiet, that's all we're here to do, is to stay present to what our feet are. And they do it. And they make you do it.
• 2:23
  Speaker B: Yes. And I'll never forget when Rocco was 2, there's a woman, Annie, who's still on our case as a parent trainer, who I love. Her specialty is relationship development intervention, rdi, which has been our lifeline. When Rocco was two and I was learning about autism in the very beginning stages, figuring things out, had a six month old, you know, still nursing, carrying her around while I'm trying to do this, Annie said to me, and it was the loving slap in the face I needed and I'm so thankful for this conversation. She said, sarah, if at any point Rocco is not responding to you, not connecting with you, he is not the problem. You are the problem. Go check yourself, check your energy. Are you nervous about something underneath that you're not admitting to yourself? Are you worried? Are you feeling not good enough? Go clean that up and come back. And it's like a magic wand. And she is right every single time. Every time.
• 3:24
  Speaker A: Our journey in life is not to save our children. Our journey in life is to save ourselves and model what that looks like to our children. So staying present to your own healing journey actually models that it allows for connectivity to your children. It's hard to grasp, but I think that our best teachers are Rocco, Millie and Mac because they aren't conditioned to think that anything but their own journey really matters. And they require a lot from us. They do.
• 3:54
  Speaker B: Yeah. What I was going to say, if you've ever had a life changing teacher or athletic coach or mentor, they were not easy on you. Probably. I've never had an experience where I look back in hindsight and think, wow, it was that teacher who went easy on me all the time who really changed my life. No, it was the teachers who demanded more from me because they knew I could give it, that showed me how to rise to an occasion. And these kids are exactly like that. And I wouldn't. I knew I had progressed on my healing within myself. When I had a conversation with someone, I was leading a retreat, we were in Tuscany, we were at a beautiful lunch, and her kids are typically developing. And she said, you know, if you could go back and change it, would you? I said, honestly, I wouldn't. I don't regret any lesson that I've learned. Like, do I want my child to have an easy time on this planet? Do I want them to be supported? Do I want them to be able to communicate? Absolutely. But we're doing that.
• 4:56
  Speaker A: We're doing that.
• 4:58
  Speaker B: That's right. And. And maybe it gets easier. Right. And maybe it's easier in different ways. But I would not have become who I needed to become without those lessons either. And I. I think that's a crucial thing.
• 5:11
  Speaker A: I've been saying over and over again, no woman in their 30s wakes up and goes, you know what? I want two children that don't speak. I can laugh about it, I can go to the comedy seller and do a bit on it. No one talks about it. And at the same time, I'm meant to be where I am, where my feet are right now because of them, Without a doubt. And it can sound cheesy and corny and universal, but, like, no one's shaking me from that knowledge. How do you deny the power of their presence and their ability to pivot us to stay present?
• 5:41
  Speaker B: I also will add that the gifts wrapped up in staying present are things I'm really thankful for, such as I have a legitimate reason that I can't say yes to. Stupid, busy things that other people get caught up in or want me to do. I have to say no. I can't bake you another thing for the bake sale. I can't schlep to that thing. That's not really that important. Nope, Sorry. Not doing yet. And it's such a gift to have a solid reason as to why simplifying life is important.
• 6:15
  Speaker A: Yes.
• 6:16
  Speaker B: Right in front of you. And I am so deeply grateful for that on a regular basis, because I see people who I love getting wrapped up in the doing and finding their self worse and how much they do. It works until it doesn't. It works until you're in adrenal fatigue, you know, and can't get out of bed, and. And that's a lesson they have to learn for themselves. I can't teach that. But what a gift to be able to say, no, not doing that. I am not available for that. Yeah.
• 6:46
  Speaker A: And sort of unapologetically say other people's reaction to me and my children is actually really none of my business. I mean, however you process my choices, it says more about you than it does about me. Right.
• 7:01
  Speaker B: Yeah.
• 7:02
  Speaker A: And I think you're right. Like the adrenal fatigue, like most people, I think at some point in life get handed a situation that causes them that. And you can't impart that on someone. Like, I can't even give a family member who willingly watches my children for a weekend any idea of what that means to live my life. Right. Like that adrenal fatigue doesn't happen over a weekend.
• 7:25
  Speaker B: Yeah. Yeah, it's true. It also reminds me of, you know, when I was testing out different things to see what would help Rocco, because it's a big experiment. What works for one kid may not work for another kid. And you and I were just talking a moment ago, before we hit record about how one kid learns a certain way, another learns a different way, and they could have the same diagnosis, the same traits to the general public, but be totally different internally. And this is such a powerful, powerful thing to grasp. And also something that requires, as you said, such presence that I really learned early on that people's opinions, unless they were living a life exactly like mine, meant nothing to me. So if you called me up with an opinion and said, hey, you really have to try this thing, or I really think this is not a worthwhile way to spend your time, I would probably take it seriously because I would think to myself, well, she gets my life. But when other people who were go about there, I'll use the word normal for lack of a better lives, would weigh in on the things I was doing with my child or with my life, sitting on the perch of their normal life.
• 8:41
  Speaker A: Right.
• 8:43
  Speaker B: I developed a rule and I want everyone struggling with family and friends and how you're raising your children compared to the others opinions of it to listen to this. I invited people when they would give me an opinion to say, hey, you know what? I could really use your help. Why don't you come and live in my house for 24 hours and hang with Rocco and cook him this gluten free, dairy free food and play with him in a way that helps him learn and stay regulated and you know, meet his needs. I'm going to take 24 hours off and go to the spa or something and then I'll come back. After you do that, I will take your opinion seriously.
• 9:27
  Speaker A: Absolutely.
• 9:28
  Speaker B: Guess what?
• 9:30
  Speaker A: No one takes you up on it.
• 9:31
  Speaker B: No, my sister did. Before she had her own children.
• 9:34
  Speaker A: She was all okay, yes, and there are people.
• 9:36
  Speaker B: Yes, fair enough, she's raising her own kids now, but no one else really did because at the end of the day, people share their opinions sometimes to help with no strings and sometimes to validate their own experience.
• 9:51
  Speaker A: Yes.
• 9:52
  Speaker B: And we're not available.
• 9:53
  Speaker A: I think with you and I and other mothers that are living a parallel journey, we are so rid of projection because we've done the work already to realize that like there's no time for it.
• 10:06
  Speaker B: Right.
• 10:07
  Speaker A: I think when you boil down to the salt is a lot of just projection on what is stirring in their own self.
• 10:13
  Speaker B: The water is Rocco's happy place. This is no surprise. There's a documentary about him. So the water uses him to is a way he uses to regulate himself. So he wakes up in the morning before school, takes a shower. It's like his version of coffee. 6:30, you know, because high school starts early. So he wakes up, takes a shower, you know, comes out looking all fresh and clean, puts in his hair products, wears his essential oil cologne, goes to school smelling great, comes home, you know, we'll chill for a bit, have a snack and then a Shower is the way he washes off the school day, which I'm not mad about, you know, especially during kid germ sharing season. Yeah, fine with that. And. And then he showers again before he goes to bed and so lovely. It's great. He smells great. And I remember last year at the science fair, the department head was walking down the aisle of 8th graders and she was like, huh, these kids smell terrible. As 14 year olds do. And then she gets to Rocco and she's like, except for Rocco, he's so nice. What cologne does he use? And right.
• 11:23
  Speaker A: You're like, bergamot for bergamot or whatever.
• 11:25
  Speaker B: It's just essential oil stuff that has like a common. But I was like, hey, it's one thing that is easy for him. And I take it for granted. And I took it for granted until I had a friend who told me her son was scared to wash his hair. And they had to work really hard to get him acclimated to the shower and the sprayer and washing his hair. And I thought, oh, wow. Everyone's going to have things that they struggle with. Everyone's going to have things that they run with and they thrive. The challenge as a parent is getting to know your kids way of being in the world and what regulates them and what dysregulates them. And in fact, an amazing occupational therapist who Rocco worked with for a while in his last school until he left. So amazing. And she's like, this is the challenge about what helps someone regulate themselves is that it's going to be different for everybody. Water is regulating to Rocco and Millie and Mac. These kids are sharp, they're smelling good. They love the shower. It calms them when they need a moment. Great. Their kids are terrified and it will dysregulate them and increase their anxiety. So what's going to help your kid to have a smooth morning on the way to school? Well, that's for you to figure out.
• 12:39
  Speaker A: Exactly. And that's our directive. Whatever child you have, I know that you and I, sometimes it can seem like, well, they were handed such a difficult. Not difficult. They were handed such a curveball from what their expectations were that they've risen to this understanding and have this mindset that's staying curious to what their needs are. Because we have to.
• 13:02
  Speaker B: Yes.
• 13:03
  Speaker A: And it's. Yeah, but we get to. And then it allows me to stay curious in other ways of my life. That's the beauty in parenting these kids. I can picture the joy of, of my children in the bathtub, in the pool, at the Ocean. Like I can picture it. That gives me such clarity on leaning into what I love most in life. One on one conversations with friends. I love it. I've always loved that. Why would I not celebrate and do more of that? Because it makes me feel good.
• 13:32
  Speaker B: And that's such a great point. When do typical adults get so jaded that we stop leaning into these things? Things that bring us an immense amount of joy or why do we think we're unworthy of having that every day?
• 13:44
  Speaker A: Yeah.
• 13:45
  Speaker B: And yet we have these little. Now mine is not so little beings who are showing us. This brings me joy every day. I want to do it. Yes. And like, how cool. Right?
• 13:57
  Speaker A: How cool.
• 13:58
  Speaker B: So cool. And why do we as adults think, oh, well, I have to stay in this job that I hate or I, I can't go to my yoga mat. That brings me clarity and peace because I have to go to the grocery store instead or I have to do these things. And it's always this balance of like, yes, we are responsible for our minor children and we have to steer the ship, so to speak. But how can we also remind ourselves every day that we are worthy of having that same level of joy and clarity and presence and whatever it takes to get us there is worth doing? Because then we bring that version of ourselves to our families and they're so much better off. And we're showing them what it looks like to live a life that's joyful every day and we're matching that vibe with them. And I think it's also very important to remind listeners that your kids find their joy because you nurture that in them. There are many kids who are matching their parents vibration of constant anxiety, constant stress, because that's what they're learning.
• 15:06
  Speaker A: That's what they modeled. That's what they've been modeled. I mean, that's right. That's hard to break.
• 15:11
  Speaker B: Yeah.
• 15:12
  Speaker A: That. You know, I'm sure you and I both absorb a lot of what I think are powerful things on social media about, like changing the story, changing the, the generational trajectory, making conscious things for what makes best for your family. It might not make best make sense to others. That is really difficult because modeling it from a child perspective is so ingrained. Right. Like how you and I were both raised. I don't even know how many differences they have, but we are. That is so essential. Whether we choose to follow that modeling or change that. I mean, it's hard. It is really hard. And I think talking about it and saying it's hard, it doesn't make it easier, but at least acknowledges it.
• 15:57
  Speaker B: You know, I also think it opens the door to ask questions of like, well, does it have to be hard? I mean, I'm a child of the 80s. I was raised Gen X style. Like, don't come home until dinner's on the table. Even if you want it, don't come home till dinner. Door will be locked, we're cooking and, you know, you want to go buy this thing, figure out how to get the money. Like, go figure it out. And hard work was indoctrinated, yes, as a positive quality. And I value ambition, I value work ethic and excellence and quality and all of those things. But as an adult, I have done so much work, so much subconscious reprogramming around what does an easy life look like? Because I've got enough on my plate, I don't need to make my trajectory harder. How can I make it easier? And how can I lean into it? Is the easy things that bring me joy and abundance and prosperity easy in that I'm not making things overly complicated or devaluing. The gifts that come easy to me that I want to share with the world, they may not come easily to someone else.
• 17:05
  Speaker A: Right.
• 17:06
  Speaker B: And so it's. It's really interesting to see how, as I've done a lot more work around allowing myself to feel worthy of ease in different parts of my life. Not to say that all day, every day is easy, but I've seen my kids lean into their own joy in a different way. And it's almost given all of us a quality, not quantity type of vibe. Like, Rocco and I would rather sit and do our rapid prompt method, which is a way of learning and spelling to communicate for a solid hour a day. That is like, all in having fun together. And then after that, he might jump in the pool or go outside and take a walk or a bike ride and just be regular people in the way that we do. But in the past, I probably would have felt like, no, it has to be more. I have to do more. This isn't enough. And it's always that not enoughness, that really insidious not enough feeling that we have to look out for because we don't have to verbally tell our kids about being enough or not enough. They're going to pick it up based on what we do. If we give our kids all their green vegetables and zero screen time. If we are operating from a place of stress and not good enoughness, that's what they're going to feel, and that's what they're going to remember and learn so we don't have to spell it out to them. Pun intended. Yeah, it's more like we are showing them every day.
• 18:47
  Speaker A: Show them every day. Well, I was. I had a conversation with a kindergarten teacher who was one of my first babysitters when I moved from the city to the suburbs. And she was around in my home then when Morgan, my typical oldest, was two and I was pregnant with Millie. And she saw, in a way that many didn't, the inner workings of my story and my life, from questioning what's going on with Millie to them being pregnant with Mac, to the diagnosis of Millie when that was. And so I brought her on to have a discussion. I said, you know, how did you just absorbing, like me modeling motherhood to you as a college student, special education major, affect you? And she said, you never could have said anything to me about your life. And she goes, in fact, Sarah, you were so in the throes of decision making and therapies and early intervention and having three kids under the age of five that you and I talked. But it wasn't a lot. I mean, she said that honestly, looking back, like, I got to experience and see how you showed up as a mother to a life that was just like curveball after curveball. But I think it takes someone being so close to that, you know, that you can't speak it into existence. You have to feel it, you have to absorb it. You have to, like, be around that energy.
• 20:14
  Speaker B: And that brings me back to what we were talking about before. Getting to know your kid, getting to know what helps them regulate, what dysregulates them, their sensory needs, how they learn all this stuff. This takes energy. It takes more energy than parenting a typical child. You and I both have a typical child as well. So we see the differences side by side. How much energy one kid takes versus the other. And I went away with my typical child only for a few days a few months back. And it was our first time being away together just by ourselves for more than 24 hours. The hardest thing I had to do with her, and she is a very straightforward kid. I will give her that was not let her watch too many episodes of Gilmore Girls. Like, it is so easy. It takes so little energy compared to getting to know the nuances of a non speaker and how they operate and how they learn and helping them manage their sensory needs and helping them learn to regulate themselves that you can do a wider variety of things and go in public for longer periods, have them feel confident in their Abilities on all levels. I mean, it takes a lot of energy. It takes a lot of regulating on our part. And I think that's something that parents of neurodivergent children have to accept. It's just going to take you more energy to parent a child who is beautiful and gifted and different the way yours is. So when you accept that it's going to take you more energy on the output side, you can then give yourself more permission to bring in more energy in the way that you need, regardless of what that looks like for you.
• 21:56
  Speaker A: But you have but, like, unapologetically protective of that, too. I think. I think I always, before becoming a mother in general, realized what filled me or I started to learn.
• 22:10
  Speaker B: Yeah.
• 22:11
  Speaker A: And then in having the three children that I do have, that. That's those just, like, slight course corrections all the time, you know, ticking the needle close to what? Oh, that felt really good. I'm going to continue doing that and then. And then carving that out and sort of saying, none of this is disruptive to anyone else, but it gives me such peace and regulation. And the ownership of that is one of the coolest things I think. You know, you and I both Learned in our 30s, a lot younger than other moms and maybe typical children learn. You know, I think about how one of my favorite podcasts right now is the Julia Louis Dreyfus Wiser Than Me. Hmm. And she's like, I don't want friends that are younger than me. I just don't. Like, I don't want. I don't want to know. I don't. I want to talk to the woman that has lived, you know, to her mid-80s and tell me about your life. And I think that you and I were handed a intensity in our. I mean, we live it. We are currently here living with an intensity that's presses the fast forward button on a lot of really big life lessons. And we're. We're hanging on and we're saying, yep, give them to me. Like, yeah, come on. But it takes a lot to receive that. It takes a lot to accept that. So we have to do the other things that, like, balance that out.
• 23:30
  Speaker B: For me, part of that is taking unapologetic ownership of. I need a spiritual practice that fills me up in my life because I've always felt there was a spiritual purpose for my child being different.
• 23:45
  Speaker A: Yes. Yes.
• 23:46
  Speaker B: And what's interesting is every client that I've ever had feels the same way, but they don't always out themselves about that until they talk to me. And then they're like, oh, you get my life. I can share that. There's a reason for this. I don't know what it is. I don't know why, but I think for me, it's not enough to do things that just make me feel good. It's also important for me to do things that give me spiritual endurance. And again, for everyone, this might look different. Maybe you work with a shaman, maybe you do a yoga practice, maybe you meditate, maybe you go to church, maybe you pray, Right? But I think that's a really important thing because I think there are so many mysteries in this life that we will never understand on a 3D regular world level. And a lot of them we may never understand, ever. We just have to lean into what is here for me today, trusting that. And those are all lessons that I learned through spiritual practice. Nobody taught those to me in university or even growing up. And so I think for me, that's an essential component of saying, hey, yeah, hand up. I'll take the lessons on this journey. Give them to me. I'm ready. That, for me, is an essential part of being ready. I don't know if I could handle it without.
• 25:02
  Speaker A: I think that our amazingly beautiful, unique children almost provide clarity to some things that we've learned early on. And we go, that's why I did that. That's what prepared me for this. You know, I think, Ed, for years, even just in my first, I had struggled postpartum with Morgan with a lot of postpartum anxiety. And you know, I had, I had found Bikram yoga years before that and went back to that practice, you know, after having her. And I always thought, oh, you know, Bikram yoga would really save me from postpartum. Like the depth of postpartum and just leaning into my body and everything.
• 25:37
  Speaker B: Yeah.
• 25:38
  Speaker A: And then now you Fast forward another 10 years. I think Bikram yoga and the series and the consistency of the series is likely the yoga that Millie and I will do together for the rest of our lives, because she likes that 26 +2 every time. And so I think back to why I went to a first class and why I thought, this is the most torturous thing I've ever. Oh my gosh, like flash forward 20 years and I have a daughter who loves the same thing over and over again and holding it and not moving too quickly. It's just like, it's so damn beautiful. It's so damn beautiful.
• 26:18
  Speaker B: It is.
• 26:18
  Speaker A: And it's hard too, but it's so beautiful.
• 26:21
  Speaker B: I think, you know, now, especially with the way technology and social media work, it's easy to go online, see everyone's highlight reel, and think beauty and hardship are mutually exclusive. And that's not true. Beauty and hardship go together all the time. And I don't think you can really experience true beauty without at least understanding what hardship is. It's like the dark and the light.
• 26:51
  Speaker A: It is.
• 26:51
  Speaker B: Contrast is essential. And I think this is a crucial thing because so many parents get onto themselves around doing it wrong or not being good enough when it feels hard, hard. And it doesn't mean there's not any beauty there either. It's just the roller coaster of life in that movie, Parenthood. I think it's from the 80s or the 90s. Steve Martin, I don't know if you ever saw that movie. I haven't seen it in decades. But I remember the little grandmother with the white bun in her hair, the glasses, and she'd always kind of be wandering around, and Steve Martin wouldn't really pay her any mind, but she would say these little clips just to be paused and really absorbed it, like, oh, this is a wise lady, like the Julia Louis Dreyfus friend. Right, Right, right. She goes, like, your grandfather used to take me to the carnival. So many people liked the merry go round. And it was so boring. Round and round, boring. And then she's like, I like the roller coaster. It was scary. Sometimes it was fun. Sometimes I was terrified. You'd be high, you'd be low, you didn't know what was coming next. But I liked the roller coaster. It was for me, you know, Steve Martin's character is like, thanks, Grandma. And he's in the middle of his stressful moment. His wife is. I think Mary Steenburger is like, you know, wow, that was grandma lesson in a way only grandma could give it. There's so much wisdom in that. There's so much wisdom in the not knowing. Right. And so much wisdom in the fully being present. Because I don't know which way the roller coaster is going to turn next. And I have to be just here to absorb. Just.
• 28:29
  Speaker A: I think I've. I had read for years and I think. And again, I think Rocco, Millie and Mac are our greatest teachers. Is that it just is. There's literally nothing after. It just is. There's is what it just is. It just is. And I for years graded against. Is what? Tell me. Help. Like, I wanted to learn. I felt open to learning. Share with me. Tell me all these things. No, it just is. And it's the most freeing thing when you realize that.
• 28:58
  Speaker B: And it's fascinating to look at all of this and add it into your daily life and think about, all right, what's happening today? Are we on the roller coaster? Are we on the merry go round?
• 29:09
  Speaker A: Exactly. Exactly. All right, here we go. Yeah. Well, thank you for this beautiful discussion. I know we could talk for, you know, four days and a weekend, but I. I'm just so thankful for the work that you do into. I know you, You. You do consulting, one on one, peer consulting. You. You are coaching and leaning into all the different questions that as a community of autism parents, we are asking. And there is just such beauty in your journey, you know, like, you get. You getting to be Rocco's mom allowed you to be where you are right now. And it's a pleasure. It's a pleasure to know you and to learn from you and to absorb all that you give to this world as well. So we'll have all your information listed below, how everyone can find you and connect and thank you for your time as always.
• 29:56
  Speaker B: Thanks for having me. I so appreciate these discussions that you have in an unfiltered fashion. And one of the things I just want to leave people with is I'm someone who asks a lot of questions, and I think there's no question that's off limits. And that's something I really aim to do in my work. I have people on my Instagram asking about health questions, so I brought in a health expert and did a workshop. I. I have people asking about self regulation questions, so I'm bringing in a regulation expert and we're looking at that. Instead of kind of parroting the narratives of just love and accept your kid, which we obviously do. This goes without saying. Yeah, let's love and accept them and let's ask some questions around. How can we be better supports for them and how can we also better support ourselves? Yeah, and there's.
• 30:43
  Speaker A: It's true.
• 30:43
  Speaker B: No question. That's off limits in my world.
• 30:45
  Speaker A: My alternate title of this podcast was Stay Curious.
• 30:49
  Speaker B: That's it.
• 30:50
  Speaker A: I love it. Just stay curious.
• 30:51
  Speaker B: Yeah.
• 30:52
  Speaker A: If you stay curious and you ask questions, it is never the wrong. The wrong choice.
• 30:59
  Speaker B: So totally.
• 31:00
  Speaker A: Thank you for you for your work and all that you do for this community. Love you to pieces.
• 31:05
  Speaker B: Love you too.
• 31:06
  Speaker A: All right, bye until next time. Bye.