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Exploring Autism: Parenting Wins and Emotions with Sunita Theiss · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: It is a busy week here at the Inchtons podcast, and after a lot of back and forth with Sunita, because she and I live very parallel, very neurodiverse lives, I'm so happy to record today with Sunita Tees, who is a writer and neurodiversity advocate not only for herself, but for her children and family. And, Sunita, thank you so much for being here today.
• 0:22
  Speaker B: Thank you for having me.
• 0:23
  Speaker A: You know, my boyfriend Marcus, who discovered you, and I absorbed so much of your writing, both on Instagram and through your stories and then on Substack. Your vulnerability to owning your story is something that's really apparent and draws me, as a neurodiverse advocate, to and towards you. Could you share a little bit about the turning point in your life when you thought something bigger is going on here?
• 0:49
  Speaker B: Yeah. I mean, I think for us, it was like, we. We struggled a lot with. With getting pregnant and staying pregnant. And so infertility and pregnancy loss have been a lot of our journey. And I just kept not finding people who looked like me in that storytelling and in that experience. And so I started to write about that a little bit. And then my son, my older child got his diagnosis, and we didn't love that first experience. And then we, a few years later, we had losses, and we're on this secondary infertility journey, and we had our daughter, and I noticed behaviors that were not similar but were concerning. And I went to the pediatrician, and she was like, yeah, just like, I can refer you for an evaluation. And then I called my mom, and my mom was like, you did all of that stuff? And I was like, wait a minute. And so I called their practice back, and I just said, like, hey, do you guys do grownups? Like, can I just.
• 1:56
  Speaker A: Like, anyone over 18?
• 1:59
  Speaker B: Yeah. I was like, can I just squeeze in? And so actually, my daughter and I got our diagnosis the same week.
• 2:04
  Speaker A: And when you say loud, how does that feel?
• 2:09
  Speaker B: I mean, honestly, it's just like. Like a whoosh of air comes out, like, coming out of my body. Like, I'm just, like, relieved to know I had already been starting to share about our homeschooling journey and our parenting journey. Because we're Christian, and in Christian spaces, there isn't a lot of. Of how to support neurodivergent kids in a less conventional way. So, like, we have a super relaxed approach to homeschool. We are still part of a classical co op. My son's actually, like, at another learning pod right now that is, like, nature and play based and we've had to kind of, like, piece it together ourselves. And I went, well, I don't see any Indian women talking about this. I don't see any Christian women. I don't see any Indian Christian women talking, you know, and so I was like, I'm gonna just start sharing because kind of like, your vision for this podcast. Like, I needed short, digestible content five years ago, and it wasn't there. And so I can't speak to the experience of having a teenager. I've never had one. But I can't speak to the experience of, like, where I am now and what's working for us and what's not, and when we pivot. And I think it requires vulnerability, but I just, like, I wish someone else had been vulnerable for me. And so the feedback I'm getting is that, like, more of this is needed, more conversations like this one. Like, the stuff you and I both post on Instagram, the things that we're telling, our stories. Like, these people feel less alone and they feel seen.
• 3:29
  Speaker A: I always say and remind myself. And it's probably a little bit of, you know, confirmation bias, but I always say to myself as I'm writing or about to post, I am not unique. Like, we feel like, to your point, like an Indian Christian mother, homeschooling, you know, and homeschooling family. Like, single mom living in central New Jersey, right outside of New York. You know, three kids, two with special needs. That seems specific. But I know because of this right now that we're not unique and that there are. There are others out there who might not have the innate desire to share. And I can completely understand that. And I think when I go back to really understanding who I am, I've always liked to share and write. Like, that isn't for everyone at all. And so I think that you're right in saying, like, this is what we're doing now. This is what I would have needed to inform anyone else on their own journey and to be a mirror to that.
• 4:25
  Speaker B: And I think with writing, too, I got. Probably one of the best pieces of advice I got was, like, write what you want to read. Write the things you wish you could have read. And I think the reason I've been able to write so much and connecting with people is because it's, like, what I needed. I'm not trying. I mean, and I work. I have to work with editors. I have to, you know, when I have articles and, like, sort of tweak here and there, but it's like, this is the story I want to read. And when you send a pitch, they can go, we don't need that right now. And like, that's cool. I'll try something else. I'll still write it. I'll probably put it on substack.
• 5:03
  Speaker A: Exactly.
• 5:04
  Speaker B: And so if I read something I wrote and it doesn't resonate with me, then it's not, it doesn't need to be out in the world yet.
• 5:10
  Speaker A: Totally. You know, I've, I've jumped into sort of the keynote speaking world and speaking to companies. And I was reflecting a few days ago thinking it's a great skill set that I've learned and I've loved it. And I grew up doing theater and whatnot. And at the same time, kind of coming back to your point, that that isn't exactly what makes me me, it's part of it. And I, I enjoy being live and having an audience, but I actually appreciate this more. I really do. And I love the mom who's like, oh my God, someone told me I have to talk to you. Like, I don't care about 500 people in an audience. Like, this is, this is why I do it. I want to help that one mom change their day or change their outlook.
• 5:53
  Speaker B: Yeah, yeah, yeah. I love that. And I think, I mean, I think probably you would relate to this. Like I've been that one mom that's like, oh, I need to talk to this person and ask them questions because they're a little ahead of me on this journey or they've had a similar journey. And, and it's just, it's so important and so valuable to have those people. And like when you have the capacity to be a resource, then like to offer that out too, because people have been a resource for us.
• 6:17
  Speaker A: Totally. I mean, I think back about. And you probably experienced similar in those pediatrician offices where it was like being slit an eight and a half by 11 piece of paper. That was going to help, right?
• 6:30
  Speaker B: Yeah.
• 6:31
  Speaker A: My hope is that in years past, when we are even on this earth, that like it's a hologram of like you or I being like, here's what you should do. Like, I'm here to help you. Like, I'm an AI version of a first time advocate. My dog is trying to jump in because that's the irony of neurodiversity, is that it actually is full of really deep emotions tied to it and there's a depth to it. I almost think it, it goes, the pendulum goes so far the other way that we've come full circle that I actually think having having been given the experience, that it felt like I was a label or my children were labels, or that this was just a word and a diagnosis in a dsm, you know, categorized set of letters and numbers. To realizing that it's so complex and so deeply emotional has, I hope, gives rise to both of our platforms because it shows that, like, the personhood is actually not anything like the fx. Right. I always joke, like, that's. Or whatever that is for like, nonsense.
• 7:32
  Speaker B: It's 84.
• 7:33
  Speaker A: Yeah. Thank you. I knew I said see, that's funny. Yeah, that's really funny. And I can see it in like the typewriter font. Yeah. And like, that's, there's like so much loaded behind that. And I'm sure that any parent who has a diagnosis for their child's health can feel that, but when it comes to neurological diagnoses, it's like, how do you divorce the emotions and the fullness of what that diagnosis means?
• 7:57
  Speaker B: Well, and I think too, like, when a disability is invisible, when the lived experience, the difference, like, a lot of times my kids look like they're just acting out and I'm like, oh, no, it's like, like, and I struggle with it too. Like, my husband, like, you're really grouchy. I'm like, I can hear the lights in here. Like, and it's, it's making it hard for me to like, be a thoughtful human being right now. And so with my son, I'm like, they didn't have like the flavor of whatever he needed. And then he didn't get to seat, sit in his preferred seat. And then it was louder than usual and we forgot his headphones. And he's thirsty and he's tired and he used really gentle language the first few times he asked someone to leave him alone. And then they didn't. And so then he yelled and started crying and, and it's just like, if you can go upstream from the dysregulation, you realize, like, our kids actually work so much harder than their peers to, to stay regulated, to hold it together, to try and like, participate because they deeply desire to be like everyone else. They want to engage. The rascaling quote that, that I always hear is, you know, like, kids do well if they can, and if they're not doing well, they lack support or skills. I would, I would add felt safety into that too. And so like, our job as the grown ups is to say, okay, how can I support you? What skills are lacking here? How can I help you feel safe? How can I help you feel loved and to see them and not just like the labels that are harmful are disobedient, lazy, annoying, loud. Yeah. And then the labels that are helpful are to say, this child has a diagnosis and that means he needs these, he has these needs and he needs this kind of support. And so being able to like, connect with that in a way that motivates us to be advocates and motivates us to meet our kids where we are. Because like, if a grown up is hangry or having a hard day or like, you didn't sleep enough and someone's like, yeah, man, like, I'm just so tired. My kids are up all night, I haven't eaten breakfast. Your friends are gonna be like, cool, go to the principal's office, you know, they're gonna sit you down and go like, let me grab you a cup of coffee in a protein bar and like, let's talk. And so why don't we do that to our kids? Why don't we do that?
• 10:15
  Speaker A: I know. I, I, I've come a long way from like this micro view of, of life as a mother of children with non speaking autism, to like this macro view of there's these symptoms, right? There's these symptoms and then those symptoms, who they are, and then one step further, and I love your phrase of go upstream from the dysregulation to understand is that systems drive behavior in any person. Like if you, if you threw you and me and you in, I don't know, the Blue Lagoon in like Reykjavik right now, like, we would both have like wildly different experiences of that and our symptoms of that experience would be because of what we're taking in. So my home and who I am, and that's a, I'm creating a system for my children to respond. And when you can realize that and then not target the symptom, it like, it frees you, it completely frees you of like, this is all just informing me of who they are not trying to cure or change, like what they're trying to say.
• 11:20
  Speaker B: Yeah. And as an adult who like, who got a late diagnosis, I had thought I had ADHD since my 20s and I'd been trying to get it. But when you're, when you're successful and you're, you're high functioning and you're, whatever the, whatever semantics, you're a woman that, you know, your, your hyperactivity is inside your brain, not in your body. And so the autism diagnosis was a surprise. But at the same time, like, I can look back over the arc of my life and hear people saying, I don't know why you're like this. What is wrong with you? You just need to calm down. And I'm just like, no, no, nothing was wrong with me. Like, I'm a neurodivergent adult who experiences the world differently. To your point. Like, the way that I respond to my environment and the systems in place around me are just markedly different than the people next to me. Yes. And that does not have to be a good or a bad thing. That can be just a neutral experience.
• 12:13
  Speaker A: It just is what it is. It just is. And like, I. It's so simple. It's not easy. It's like, I think that we as a culture and in being mothers in this day and age, we have been conditioned, even being neurodivergent, we've been conditioned to desiring a certain way of living or a certain outcome for anyone to respond to who we are. So there's this level of I'm just being who I am, but fit in still. Like, be who you are within the confines of being who you are. And you know, I'm 41 and a half years old. I grew up as, you know, in the 90s, like 83, baby. And I think back to a very beautiful childhood that I had and that I was still exhibit. I was showing all of this from those years too. This was not. Nothing's a surprise to me.
• 13:06
  Speaker B: Yeah. Yeah. I played this game, sort of like tongue in cheek where I'm like, how did we miss this? And I'll be like, oh, I'm getting upset because I don't have like the right ratio of like butter on my toast or something. And then I'm just like, yeah, I don't. How did I miss this about myself? Or like I, I'm realizing, you know, in my, in my teens and twenties, like, I partied a lot, I drank a lot. And I'm like, right. Because that was the only way I could cope with being around all of this loudness. And I felt like that was what I was supposed to do. And I love people.
• 13:38
  Speaker A: Yes.
• 13:38
  Speaker B: And I think I. And I am an extrovert. And like, I don't do sounds well. And I didn't know that I could like, just throw on some headphones and I want my kids to like, just go, this is a thing about me. Just like we have brown eyes or like I have shoulder length hair or like, whatever, whatever it is that like, our kids are just like, this is who I am. This is just a part of who I Am. And it means that, like, I experience the world differently. And the thing I always tell my kids is that there are some. Because our brains are autistic, there are some things about us that are going to make the world harder for us than other people. And there are some things about us. They're going to make the world easier for us than other people. And we get to exist in that balance and tension and talk about it. And I wish someone had said that to me. I wish someone had said, your kid's gonna have all this richness and joy in his life. And instead they were like, we're so sorry to tell you this the first time. And I was just like. I was like, okay. And then when we. He was reevaluated, when my daughter and I were evaluated and the psychologist was like, they missed how intelligent he is. They missed how fun he is.
• 14:52
  Speaker A: Like, I'm realizing that my draw to conversations even like this is because I love hearing how other people experience life. I think I've always loved that. Maybe it's a. Maybe I was just studying typical people and being like, okay, that's how they live. I should sort of mask and do similar. I didn't have the verbiage on that. But I truly, truly love the study of living, like, literally just how they live. And I find it so cool that, like, we can talk about that now in a way that it's not only scientific, but deeply felt in the neurodiverse conversations that you and I have wildly different homes and our children are different, and we have different cultural backgrounds and we live in different cities. And yet what you're saying is exactly, exactly. Spot on. So spot on. For me, the, you know, I. I have quit drinking about a year, just over a year ago, fully, because exactly what you said. It was my pill. It wasn't a cure, it wasn't a relaxation point. It wasn't an anxiety solution, which I can know scientifically for any person. Alcohol doesn't do that. And for me, it was a masking pill, a hundred percent.
• 15:59
  Speaker B: And it was. It. It's a way to cope. The thing I've. I've learned sort of on my. My journey through, like, therapy and just connecting with other people who are, again, like, learning the stories of people who are. Who have been on the street a little longer, that, like, coping skills are not inherently bad. You are doing the best with what you have. And so I can, like, express gratitude to myself, my younger self, for saying, you did the best you could to get through a really tough time. And Then I can say I've got this now. Like 21 year old Sunita no longer has to drive. 37 year old Sunita gets to drive now. And 37 year old Sunita has done a ton of healing and growing and therapy and connecting with people and learning and resting since then. And so I can say thank you so much for doing such, working so hard to just get through a really tough season to my younger self.
• 16:53
  Speaker A: That's huge.
• 16:54
  Speaker B: That is huge. And now I get to go and here's where I am and look at it. Yeah. And it's, and it's not easy but it's like I know things are going to be hard because being human is hard. And so let me have some grace for myself. Let me build some time into my schedule. These are skills. Going back to my point about kids do if they can grow ups, do well if they can too. Right. And so like we need to continue to develop skills. And so I have over the last 15, 20 years been developing skills and now I can apply those skills and those strengths to the life I'm leading now.
• 17:29
  Speaker A: It's so powerful. Sunita, one of the things that I say to specifically Millie because she just, she actually loves it. My other two don't gravitate towards the gooey, emotional, cheesy mom thing. But I say to her every night, I love you and I'm so proud of you and you should be proud of yourself. And she uses a device to speak and it's one of the only things that she says alongside me that's not in song. And I have to believe that it's a, it resonates from exactly the core of what you're sharing is that we are constantly evolving. And I'm proud of who you are now and I'm proud of who you are becoming and that the dash in between there is worth giving grace to being, being, being celebrated. Saying that there's no perfect path to becoming the best version of who you're meant to be. I mean I certainly can't believe I say in my, some of my talks, you know, no one at 31 pregnant with their second child living in Manhattan goes, you know what I want 2 kids with non speaking autism like you don't wake up saying that. When I wake up every day now warmed more about who I am and my children, I'm like, well damn, I am becoming the best version of myself. And I hope I'm a little bit like chuckling or giggling in 10 years from now about these kind of conversations and how Far I've still come since then.
• 18:48
  Speaker B: Yeah. And I think. I think that's, like. That's the heart of being a parent, being human, being relational. It's like we have to keep growing. We have to keep evolving. We have to keep moving towards things. And it doesn't have to be linear, though. Like, there can be seasons where we just sit and we are where we are, and then eventually we will. We will have seasons of immense and rapid growth. I feel like the last year for me was this, like, jumpstart on. Like, it was like I'd been laying the foundation for years and years and years, and then it, like, took off like a rocket. Got my autism diagnosis, My daughter got hers. I did EMDR therapy, which was, like, so intense and so good and. And helped me just, like, learn to be more compassionate towards myself. And then you realize, like, the voice inside your head starts to get kinder, and then you're like, oh. And then you realize you're like, I want the voice of my kid's head to be kinder. I want them to regard themselves with that same positivity and that same grace and acceptance happens that, like, I am. I'm good like this. I am here, and I am beautiful, and I'm loved. And so, like, we've started saying, my son is pda and definitely, like, resists this, but he will participate sometimes when my. My daughter and I do it, but, like, when at bedtime or in the mornings or whenever I remember, I'll just have her pf to me. Like, I am safe. I am loved. I'm beautiful. I'm kind, I'm compassionate. Jesus loves me. God is for me. I can do anything. And we'll just go through those throughout the day. And so, like, now, if I start it, she can finish it. And I just want it to be like, a reflex in her brain that I can do anything.
• 20:30
  Speaker A: One of my favorite things about being a parent, you know, an autism parent and being neur myself, is what you just hit on, which is I want it to be reflexive. The mindfulness that was sort of thrust in some ways upon me when Millie was starting to show her developmental delays. I never realized in a million years was the most and continues to be the most luxurious gift of my life, which is I'm so present because of my children being who they are, that it becomes the default. Like, right now, I feel so lucky to be. I'm talking to you. I'm not daydreaming. I'm not. What's the next thing I'm not thinking, how am I going to fit in a dinner party tonight? I don't. I'm not. I'm literally just absorbing and listening to someone else share their lived experience. That is because of my children showing me who they are. And that reflex, like you said, that muscle memory is, is huge because if.
• 21:30
  Speaker B: You get distracted, you miss a cue that nobody else and. Right. And it like, I know that for the longest time I swung too far towards like hyper vigilance and anxiety. As we've all developed skills, we've all learned how to self regulate. We've all kind of learned what we need and we've learned how to ask for it in like gentle ways. You can, you can just sit and you can be. I was, as you were talking, I was like, yeah. I was like, man, I used to live at such a fast pace, working so many hours, taking call. I remember one company I worked for, we had a global team that met once, once a month, twice a month. And once a month it was 4am here because there was a UK and Australia team. Once a month it was like 10pm for the folks in Australia. And I remember there was a season where I had to get on this call. They ended up like pivoting and just not making North American Australia getting the same call for that couple of months. I remember getting up and like putting on a T shirt, like a little like a blouse T shirt, like brushing my hair, but like the pajama pants are still on. And I would like do the call and then I would like go back to bed for an hour and then I would like get up and start the day. And I was like, I don't have to do that. Like, am I up more in the middle of the night? In this season of my life? Absolutely. Like, my days just don't feel as rushed. We have two mornings a week we have to get out the door by a certain time right now. And even those I'm like, oh, I can like prepare the night before feeling totally like off because something has to give at some point and I'm gonna need to cram all these social things, all these work things in and all these people. And it's like I don't see my friends as much as I would like to, but I think that's true of motherhood, of young children, regardless of support needs.
• 23:19
  Speaker A: Yeah. I think in our 40s, I was commenting to another mom at a basketball game for my oldest and I said, I only see you here. We used to see each other so much more. And I Actually don't think it's because I'm a single mom. Like, I think this is like we're in our 40s, we have more than one child, we are living in our car. Whether it's me going to therapies or swimming lessons and you, her traveling with her, three different children's sports teams. I actually think it's very much the same. Like I just don't see 40 year old women leisurely strolling in my town. Like I see the ones that are probably almost empty nesters and I see the toddler moms. Like, where are my 40 year old something moms? We're in our car. I'm in my car.
• 24:01
  Speaker B: Yeah. I mean I just, we are taking some time off of therapies.
• 24:05
  Speaker A: Yeah.
• 24:06
  Speaker B: We hit, we kind of hit a point where I feel that, I mean, you know, four appointments a week or more between the two kids and insurance. I have spent so many years, years of my life on the phone in tears with insurance trying to get something approved, covered and I was like, I never thought that like medical billing would be a thing I would have any insight about yet. We just had a joke about insurance codes. Right. And yeah, exactly.
• 24:32
  Speaker A: You know, which I will never forget. That's now our thing.
• 24:36
  Speaker B: Yeah. It's like DM me one day.
• 24:40
  Speaker A: Is now your code name, your call sign. We are now in the military. And that is my F84 girl.
• 24:46
  Speaker B: It's like my bat signal.
• 24:47
  Speaker A: Why is it funny? It's dark because it's funny.
• 24:51
  Speaker B: It's funny because it's funny, because it's hard. I grew up so my dad was chronically internally ill. He had a lot of health issues. He passed away when I was almost 21. I was 20. It's like I saw my mom do this in a way too, that maybe that to your first question was actually the turning point for me was that I saw my mom juggle a full time career. Caregiving her two kids, caring for her husband. At times having to care for her mother in law in a country she didn't grow up in. Right.
• 25:19
  Speaker A: Like you threw it, you're like, you have to laugh. Like, how are you alive? Yeah.
• 25:25
  Speaker B: And like, and it was so hard. And she also like didn't have a choice but to do it. And I think like she's retired now and like we're so much closer because like both of us are not white knuckling anymore. And the season when I was working and I couldn't figure out if my kid was having such a hard time and she had A really high stress job. And like there was so much conflict in our relationship and now it's like, it's just we can, like, it's like we can breathe. It's like that Shinside. I don't want my kids to feel like they have to participate in the rat race. And I, and I don't know what that means for the world and society and how like you're talking about the systems in our homes but like if you zoom out like the macro level systems in our country and our states and our towns in, in how we define success, like, I don't know what needs to change. Something does.
• 26:13
  Speaker A: Yep. I, I don't know either. And I, I think in so many ways the choice to slow down or to have seasons of win. Like I love that book Wintering. I have it over here somewhere. It's from, it's by Catherine May and it talks about there are seasons in your life where we winter and we should lean into that because we're not meant to bloom at, at every, you know, every month. And in the wintering phase, which I believe as a neurodivergent person and I, I think you would agree is even more prevalent into our being the best versions of ourselves as we grow. And maybe society's pushing back on that rat race like the wintering is, is maybe part of the solution. And to say that like, we're not meant to go, go, go all the time, you know, we are not meant to fight like battles daily, daily, hourly, and then sleep for a certain number of hours and do it all again without fully resting.
• 27:13
  Speaker B: Right. Like sleep if sleep isn't restful. I sleep less now than I did before kids.
• 27:22
  Speaker A: Me too.
• 27:23
  Speaker B: I probably sleep less now even than when I was working. And I think my sleep is more restful.
• 27:28
  Speaker A: 100%. I couldn't agree more.
• 27:30
  Speaker B: Like, and it's because I'm not racing to the next thing. We have a rhythm of what our weeks look like. And I work part time on top of homeschooling and therapies and all the, all the shenanigans, but I have rhythms around that too. And I know what to expect and I only work with people who are willing to be flexible.
• 27:48
  Speaker A: What a great boundary. Say that again.
• 27:50
  Speaker B: And honestly, one of my clients taught me that. I was their full time comms director and I said, hey, I gotta scale back for my kids. And my son was just getting his diagnosis. I was pregnant with my daughter. That pregnancy had started as a twin pregnancy. And so I'm thinking I'm about to go from one to three kids, right? I have one child with an autism diagnosis. And then. And she said, we don't want you to go. How can we make this work? And I just kept scaling down and down. There was a season where I was only working 10 hours a month for them because that's all I could give them. And now I've scaled back up a little bit. But it's just like, imagine what could change if more organizations were willing to work with moms that way. Not just moms of special needs kids or kids who have any kind of disability, but just like, if they said, we recognize that these first three years are critical to the growth and development and stability of your child physiologically and cognitively. What if they had, like, a halftime policy for moms? Or what if, like. Like, imagine if corporations started getting creative with that? Because every mom I've worked with is crushing it at her job. She's just killing it. She is. She's meeting her goals. She is better at time management. She's more creative. She thinks strategically. She. She can pivot quickly. And so, like, don't make us feel like we have to choose.
• 29:01
  Speaker A: I know. I was talking with someone about looking to your point about the light. Like, the. Like, I feel the light. I wonder sometimes if those supportive measures don't have to be framed as such a big fucking deal. Like, can we just. Like, all of us are screaming this? I tend to say a lot sometimes. Like, I am screaming my insides. My head is screaming xyz. Right. I don't know how many times I can tell it. If we're all screaming that. Can we just maybe try it? Like, that's wonderful. That's such a wonderful anecdote that you share. Because what is us thinking that's supporting someone through major life chapters, the birth of children in the workforce. Why does it have to be such a big deal? You know, the more we make it a big deal, that's where the anxiety of wanting to be a mom who provides and has purpose outside of her home. Gosh, I could talk to you for hours. I do want to ask you before we wrap up and before we don't have five episodes under the belt, what is an inch stone win of your own over the past month? And what would be something that you would share to newly diagnosed parents of an autistic child?
• 30:14
  Speaker B: I loved your framework of inch stones, too. They don't have to be massive. They can be this little income. Just a little thing. Okay. And in the last month, I got to think Of a few. So my. My favorite one with my son was that I was unloading the dishwasher. We were done with school. He was like, you know, playing a game on his tablet, and he just walks in the kitchen and he goes, is there anything I can help you with? And he said, are you unloading the dishes? Can I do that, too? And I was just like, wow. I would have been like, the world stops. The world stops when you're in the context of, like, pda. I can't. Like, we don't do chore charts. We don't do, like. And so the fact that he noticed mom was working and wanted to participate in the work, and if that never happens again, that's fine, right? But that was like. I was like, yeah, here's the silverware. And then I didn't have to give instruction. I didn't. He just. He just did it. And then he goes, is there anything else I can do? And I'm like, like, what's happening? And I realized it's that long, slow. It's. It's build of the foundation they've been building of, like, you can. What do you need to feel regulated? Advocate for what you need. What can we notice that we can do? And just modeling the noticing, modeling, model.
• 31:25
  Speaker A: Model, it's becoming my word of the year. Model, model, model.
• 31:28
  Speaker B: So that was a huge gift. I could probably think of a thousand others, but we'll go with that one. And then my advice for parents of newly diagnosed kids would be to trust your gut. You know your kid better than any medical literature, any provider. That doesn't mean don't listen to your provider. But that means if something they tell you gives you pause, be discerning. Seek a second opinion if you need to. If your kid seems distressed by what you're doing, whether it's a therapy or a provider, listen to that. They are communicating with you, even if they don't have the language in the way that most people speak. And so, like, trust your gut. Be discerning. Don't throw the baby out with the bathwater.
• 32:12
  Speaker A: I love that phrase. Seriously, don't drain the baby with the bathwater. We don't want to do that as parents. We just want to know that we are fully showing up for our kids as best we can. And our children are every day showing us who they want and desire to be. And if you just get quiet with that, it's all going to. Day by day, small scale by small scale, they are going. They're going to grow up. What did a comedian say once about becoming a parent, said, I have all these people around me, and they think I'm their leader. Right. Like, I created these children, they think I'm their leader. Yeah. How cool.
• 32:49
  Speaker B: So, yeah, I think. I mean, that's a. It's really hard for a lot of people to conceptualize that disabled children grow up to become disabled adults. And I think if we stopped being, as a society in our systems, like, we stopped being afraid of that, and we started again going upstream and identifying ways to facilitate that transition for families whose children are going to be dependent on them forever, for families who might need more time to transition. I fully expect with my kids that we will just need a longer launch pad. And. And so that doesn't mean at 18, you're out and you're, like, figuring out how to pay rent and pay for your phone and pay for your car and do, like, we might have to, like, stair step this a bit, and it'll take as long as it needs to take. Wouldn't it be amazing?
• 33:40
  Speaker A: We get to do it.
• 33:41
  Speaker B: We get to do it, and we get to do it. And wouldn't it be amazing if people around us didn't shame us for it?
• 33:47
  Speaker A: I could not agree more. I think you have shown through your writing and through this conversation. I think you are such a voice in this world, and I am so thankful that we have connected live. I'm very, very thankful for just you being you. And please know that the experience that you are giving us, to have a lens into your world is absolutely making so many of us feel seen and heard. So, Sunita, thank you so much for being here today.
• 34:11
  Speaker B: Thank you, Sarah. This was amazing. I'm so wonderful.
• 34:14
  Speaker A: Me, too. Me, too. All right, well, until next time on the Instance podcast.