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Help! I’m the Best Friend—What Do I Do? · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: This is us. Do you think we should do things like, is this thing on? Kristen Simonetta. Hi, Kristen Simonetta. No, I want you to be. I mean, if this isn't actually us.
• 0:08
  Speaker B: I mean, I curled my hair for this.
• 0:10
  Speaker A: Oh, my God, your hair got so long, too. Do we talk about your T shirt first and where it's from, or do we talk about being the best autism auntie?
• 0:17
  Speaker B: Where should we go?
• 0:18
  Speaker A: I. I do want to say that this has been something that we've desired to do for a very long time, and it has more to do with our life as mothers and friends over autism. But given that this is an autism platform, we'll dive right into it because I think that's what we do. What do you feel was the foundational change in not only me as a person, but what you experienced when Millie was first diagnosed? Those moments and how I foundationally changed and what you. And how you think it changed everything.
• 0:47
  Speaker B: I had Collins Grace a little bit before you had Morgan. And we had, of course, not really any idea what we were doing. We were first time moms. And I think that for both you and I, a lot of people looked at us and they're like, you know, do they. Maybe they don't know what they're doing or maybe they're just overwhelmed. And you and I were like, no, like, they're really fussy. You know, both of our girls came out with big personalities and really, really gave us a run for our money. And I had my second a little bit before you had Millie. And I'm like, okay, like, this isn't as hard. Like, he was a better baby.
• 1:21
  Speaker A: I think he was the best. He was the best.
• 1:23
  Speaker B: He was the best. I mean, he didn't really do much, so it gave us both hope. Like, okay, you're about to have millie. I've had AJ Jr now. And here we go, round two. And you had Millie came up, I met her. Everything was great. You know, I'm not in your day to day life since I live far, but, you know, we talk 30 times a day, and I'm very in the moment with what's going on. And I remember you thinking about, all right, I, you know, I think we're ready for number three. I think we want to do this, but there's just something in me that's telling me that Millie's delayed. And I think some people around you, or I think maybe pacifying you, saying, you know, I know what I know. Just like we knew when our firstborn, it wasn't us, they Were.
• 2:08
  Speaker A: They were harder. We weren't writing books on parenting. We were like, someone tell us what to. What to do. Please, someone tell us what to do.
• 2:15
  Speaker B: Right? Because we just knew that it wasn't just us being overly anxious or postpartum. It was. It was. It was tough. It was really, really tough. It was. So I knew that since you shared such a similar experience to me with Collins, Grace, and our firstborn, that when you started having concerns and things were starting to catch your attention with Millie, I knew, okay, there's something bigger here. She obviously has done this before. This is not first time mom concerns. This is. I see a development.
• 2:46
  Speaker A: This is one of those fascinating things about having and being blessed with such a, like, sister friend. Is that you saying that to me realizes that you're not only recognizing your own gut experiences, but you're recognizing that you trust mine too. You can only go so far with a spouse or, you know, a parent that, like, it has to come from someone going, I know that she's not lying here. I don't think I've ever heard you say that like that.
• 3:11
  Speaker B: Yeah. And, you know, when you first started going to the pediatrician and starting to get answers, I feel like I vaguely remember you first going and then kind of not shooing you along, but. But more or less being like, let's give it some time.
• 3:22
  Speaker A: And you're like, no, there's like, I'm already delayed. We're already behind.
• 3:25
  Speaker B: Right. Like, let's get this going. I think she needs intervention. Like, let's start pulling back the layers and figuring out what's going on. Because why wait? I mean, there's no point of waiting if you felt so deeply that we needed to not even get a diagnosis, but just really try to figure out what's going on and why does this feel. Feel different than my birth?
• 3:46
  Speaker A: How did you feel, though, as a friend? Because we were so tick, tick, ticking along. So, like, in parallel, do you feel like it changed your own acceptance of your own kids developments at all, or did it. Did it help you lean in more to understanding your own kids through their own development? I feel like it was such a. It was such, like, a hurricane tsunami for me that. And I know you remember that watching me that, like, I honestly don't know what you were experiencing because I was so in it.
• 4:13
  Speaker B: Yeah, you were so in it. You know, ironically enough, I had had the most challenges, different set of challenges with my second than I did with my first. But AJ Jr my second, you know, is my first boy. So I Feel like people were like, well, maybe you just aren't experienced with a boy and boys are a lot different than girls. And I knew for my own child that something was going on as, well, differently than what you were experiencing, but something that I still needed to find answers for. And a lot of people kind of shooed me along, like, give him time. He's little, he's young, but I mean, he didn't talk till after he was three. He walked late.
• 4:47
  Speaker A: I forget that. I forget that.
• 4:49
  Speaker B: He was very, very delayed and I was very concerned. Now, I never thought that it could have been autism. Not. And I didn't have any experience. And you know, I've learned so much about autism, of course, through you, but I in my gut thought, I still need answers because this still doesn't feel right for me. And you are so strong in your belief that you were going to keep going to whomever you needed to go to until you got an answer that you felt was correct. And I did the same thing. And I feel like we really advocated for each other.
• 5:23
  Speaker A: Yes.
• 5:24
  Speaker B: You wanted to put Millie in the best place that's going to make her thrive. And it took you appointments and, you know, lots of doctor conversations and talking to therapists and the community until you got an answer that you felt like was going to really help you and your family and Millie.
• 5:44
  Speaker A: Yeah, I mean, I, I guess I forget that in my own, like, again, like, like bottom of the floor, like, what, what? Well, what, what felt like rock bottom at that moment. Clearly it wasn't. I didn't realize that there was a. There was a recognizing of trusting your own gut for your own children in a completely different way.
• 6:04
  Speaker B: Yeah.
• 6:05
  Speaker A: And I think because we were then fully full time two kid moms, like, it wasn't our first rodeo. There wasn't anything that was gonna stop me from wanting a third kid. And I think that when I think back on that, I do question why I was so. Go, go, go with that. Given that I was in such a questioning spiral with Millie and at the same time I wouldn't change it for the world. Right. Like, I think back on how much I learned through that and how much you probably learned through watching me did it. Has it changed your thoughts on your own life? I mean, I know you and I sitting at Bistro X, you know, me three months pregnant and you eight months pregnant with our first. We were not thinking that we were going to have this conversation in 12 years. Right.
• 6:48
  Speaker B: I mean, yeah. Your family has changed my family's entire life. And in so Many ways. And I think. And I'm so thankful that my children have your family to be able to experience all different types of people and their acceptance for all different types of children. And I actually didn't tell you this, but this week, this past weekend, I was at the playground with my youngest, who is 6, and he is a bulldozer, which, you know. And he's got paws. He's got paws. He's just. He's just very. He's a big, lovey teddy bear.
• 7:24
  Speaker A: Like a. He's like a. He's like the lion that's going to challenge his dad to become king of the Savannah, you know?
• 7:29
  Speaker B: Yeah. He's just really the best, and he's a very, very sweet soul. And we were at the playground, and there was one other child there with his mother, or who I assume was his mother, and I could tell that he was autistic. And Penn. My child's name is Penn. He walked up to the playground, and this other child was standing there and, like, wasn't really moving. Like, on this, like, little bridge for Pen to go, I could tell the mother was starting to get a little bit uncomfortable. Now, this child was definitely younger than Pen, maybe by like, a year or two. Maybe just by, like, a year. And I said, penny, you know, why don't you tell him? Like, excuse me. Like, you go by. And the mom kind of, like, looked at her child when she was a boy and then looked at me, and she's like, I'm sorry. He doesn't understand. I'm like, that's okay. And Pen goes, that's okay. Let's just play. And he didn't think it was, you know, why is he not talking to me? And why is he not really moving? And why does he look confused? Penn just, like, figured out, like, let's just. Let's play together. And this is just.
• 8:24
  Speaker A: This is the reality. Like, let's just keep going.
• 8:26
  Speaker B: Right? But, you know, I think that for a lot of kids, they might have. I mean, kids can be mean, and it can be awkward, and kids can say, you know, why are they talking? Or, you know, why this or why that? And I think that my. All of my children, for sure, fully understand everyone is different. And until you have someone in your life that you're really close with, to see this in real time, in real life, you know, I'm so grateful that I do think my kids have a little bit extra sensitivity to any type of children that appears different than them.
• 8:56
  Speaker A: Yeah, I, like, I see that. I've seen that because of how close we are as friends and with the kids I, I have. We know, and we've acknowledged each other's children's, like, superpowers and the beautiful parts of who they are and the girls, the older girls being like such spitfires and little mini us, and then at the same time noticing, like, the softness of AJ Jr and Millie in particular, to bring even that out even greater for AJ Junior. I say that with Millie and AJ Junior because they're the closest in age, but like, because of the. Of given the. The opportunity to actually be around each other and to actually, as a child notice those differences. I think it just almost brings out the best parts. I see it bringing out the parts that I love about your kids innately just gets, like, magnified because they are such sweet soul. I think breeding the environment of acceptance. But then see being able to experience it so like, so, so, so closely is getting. Gets you to see the parts that you love most about your kids too, and, like, how sweet they are and how inclusive they are. You have to take pause because that's the guidance that you get to provide as a mother, but also because you love us and our family. And, you know, we don't know what Millie thinks about, you know, brother, and we don't. We don't know what Mac thinks about. About Penn and their, Their roughhousing. But my hope is that it doesn't matter what they think. It's how everyone feels about it and that we're all just making memories and. And it's. There's typical things that we get to do. Still, it just looks different.
• 10:27
  Speaker B: I mean, and honestly, I actually disagree with you. We definitely, I think. No, I mean, we took, you know, Millie and AJ To Disney World, and Millie, she's going to do what she doesn't want to do, which is my favorite thing about Millie. It's just.
• 10:40
  Speaker A: And she also doesn't care that that's your favorite thing about her.
• 10:42
  Speaker B: She's, like, cool, great. Like, I'm not doing this to make you happy. I'm doing. This is my favorite thing. If you like it, great.
• 10:48
  Speaker A: If not, people pleasing is the last thing that she's ever going to know or understand.
• 10:52
  Speaker B: Right? And I think, you know, during that trip to Disney World, you know, AJ just grabbed her hand and they'd walk and she wasn't annoyed and she's not irritated. And they said, you know, she'd sit in front of him and on the roller coasters and he put his hands above.
• 11:06
  Speaker A: You know, I can't believe Accepting she.
• 11:09
  Speaker B: Was of that and she let him touch him and she don't want him to touch him. You know, she said to it, because I think that she felt like, you know, he was a safe place to land and he feels safe because she could feel the acceptance he had.
• 11:21
  Speaker A: That to me, is the luxury item that you can't purchase. And I always talk with this. It's like, it's the. It's the piece of gold that you're. I don't have access to that unless I set my family up to be open to that. And like us setting up the. The opportunities for our kids. And specifically, you know, with mine, they get to do what every typical kid gets to do, and it's going to look a lot harder. But those moments of connectivity that is going off of a feeling and a built understanding and a shared friendship and a knowing that it's like, exactly like it's such a safe friendship to have. I mean, I don't think I ever until then saw Millie actively hold. Hold another kid's hand.
• 12:00
  Speaker B: I mean, she kept doing it and she kept. And she kept reaching.
• 12:03
  Speaker A: I mean, you know, the reaching back and knowing that, like, well, I don't want to hold mom's hand. I want to. I want to hold his hand, right? And, you know, she didn't even need to hold his hand. And it's a small world.
• 12:12
  Speaker B: I was just thinking about this. It was a small world. And I remember being on that little boat, and I think that they were sitting in the row ahead of us, and I think she was, like, trying to touch the water. And age was like, no, no, you can't touch. And normally Millie would, like, smack his hand or like, don't touch me. She kind of looked at him and like, hey, maybe I should. Like, he's not.
• 12:31
  Speaker A: Maybe he's not touching the water. Like, I don't need to either, right?
• 12:33
  Speaker B: But she would really let him direct her because she knew, like, it felt like a friend versus, like, mom put me with some, you know, kid today, and I have to, you know, pal around with that.
• 12:45
  Speaker A: That for me is like the greatest silver lining in all of this with. But with the younger ones. And I think with Millie specifically being the first injection of this to your family and her knowing again, I think the word of the day, I think it is safe. I think she feel. Felt really safe. And I think. I think that Millie and Mac too. But Millie being older, she feels something when it comes to people wanting to be with her. Like, if someone is like, actually wants to be around her and enjoy her presence as a friend versus someone who's just like, oh, their mom dragged them along here. You know, I think that they, I think that she senses that for sure.
• 13:19
  Speaker B: We, we know that she knows exactly what's going on.
• 13:24
  Speaker A: Yeah. And I, and I think that though that has to be something that, like you as a mom or as just as Kristen never would have thought would be something that you were desiring to learn as a mom, desiring to learn as a friend. I mean, we didn't go into motherhood together thinking that this was ever going to be. The reality is that I was going to have two children, you know, with non speaking autism. And I, you know, I get choked up saying this, but like, I'm just so thankful that your family is your family. You know, I'm so thankful that brother is brother. I'm so thankful that pen is pen. Like, I'm so thankful that Susan Morgan or Susan Morgan. Like, I am so thankful because it.
• 13:59
  Speaker B: Fits exactly how it was supposed to.
• 14:01
  Speaker A: We get to experience motherhood and we don't get to choose what we're going to get to experience. And I think that because of our vulnerability as friends and what we share has allowed for that, regardless of what my family ended up truly being, which is, you know, not, not the norm, not the norm at all. Okay. This is something that I think will resonate. What advice would you give to a best friend of someone whose child just got diagnosed? What do you think, looking back was something that you were like? I know I did that and I know that it helps Sarah so much. But I'm, I mean, I know what helped me a lot. I think that there are so many people and friends out there that don't know what to do. Like they don't know how to help and they want to help, but they don't know how to help and they can't be in it and you can't go to the therapies and you can't do this.
• 14:45
  Speaker B: What do you, what do you think.
• 14:46
  Speaker A: That you consciously did that might help.
• 14:48
  Speaker B: You talk so much about. After learning about Millie's diagnosis first and just like this period of like massive grief, when you ask me a question, I answer. I try not to give unsolicited advice because I don't know what I'm talking. I was able to walk with you on your journey, but you certainly, I mean, no one can understand what your life is like. And we still talk about that to this day. I think my biggest piece of advice is just be a good Listener. Because a lot of people aren't going to want your advice, especially if it's not an area of your expertise as much as anyone wants to. Unless they're living in your shoes and living in your house and dealing with the daily challenges that you're facing. I can't, I can't help. I can just walk with you.
• 15:26
  Speaker A: I think I mean that. So there's two things. One, I remember I sent you this meme or whatever. It was like a clip, a reel that said it was Simon Sinek. And it was like, if you have one person in your life that you can call at any given moment and say, do you have eight minutes? And apparently eight minutes is like all that someone needs to feel like, okay, someone heard me. Someone like gave their time in their life to, to like, listen to me vent or cry or just like data dump. What all is going on. That, to me is the best form of listening that you provided. Because I was probably, I think back, like the spiraling that I was doing was so intense.
• 16:04
  Speaker B: We can word vomit each other all day for eight minutes and it'd be like nothing. So for you, it might have felt like, gosh, that was such a, you know, safe place for me to land. And it was so nice to get it off my chest and, and to say it out loud probably a little bit.
• 16:16
  Speaker A: I think that that helped the grief timeline for me as women have found another, you know, sister friend. Like it. It pours from us, right? We're so thankful to. And I think going back to holding space and just listening is that when you get really quiet about the overload through a diagnosis or families being shaken up or whatever, there, there are needs that, that someone can take off the plate that might not seem like big tasks. That's. That are honestly were such a huge burden for me in dealing with other, my other children. You know, I had a newborn and I was like in deep grief. I never ever thought of it as grief until I was actively in it and going, yeah, I. I lo. I lost something big. I lost. I lost the life that I had anticipated for myself. And that is, that actually is a loss. You know, even if it wasn't tangible.
• 17:07
  Speaker B: It was a loss going a piece of advice for, for other families. I do vividly remember once they finally said the words like, Millie's autistic. I remember us talking and you very firmly said, well, option A is not going to work with, you know what? I. So I'm going to have to kick the shit out of option B because I don't have any other choice. I think you really did embrace it. Anyone who knows you knows that you kicked the shit out of option B. You didn't take no for an answer. You, you know, called, recalled.
• 17:41
  Speaker A: Yeah.
• 17:42
  Speaker B: Left messages, sewed up where you thought you needed to. I mean, you, you know, interviewed. I had to do.
• 17:48
  Speaker A: There was like, there's no alternative. And I feel like for us in you sharing that, like there was really no alternative.
• 17:53
  Speaker B: Like you were exceptionally strong and were really ready to cut option Bs. However, you know, seeing some people who can accept and you know, wait for the appointments and wait for a change and then that change never comes and then they're constantly in this cycle of grief and frustration and anger because they can't accept option B is going to be okay. And option B is, it can look.
• 18:18
  Speaker A: And can look really beautiful. Like we, we can laugh at ourselves, you know, about the things that are, we're so rigid about. We have to be able to, to, to find the beauty in the, in the silver lining in this option B because it really, I guess maybe that was, you know, that book that this is Sheryl Sandberg book option B. And like reading about that and knowing that like I'm not unique, that was also a big thing that you and I talked about. Like this is not unique. Like I am not the first mom to have two kids with non speaking autism. Like I sometimes can I take a step back. Like, wow, I get to have a typical developing child, I get to have a daughter with unsuccessful and I get to have a son. Like that combination is, is unique to my, my most inner world and circle, but it's still not unique. There's other women and parents out there that have my exact combination and it. Realizing that my experience is mine, but it's also going to be had by others is why I feel like these kind of conversations and how I've leaned into our friendship and how that's changed and evolved and your children being impacted, it's like that's the, that's the good stuff. That's the good stuff, you know?
• 19:22
  Speaker B: Yeah. I also think that, you know, inevitably, I think this has certainly changed. Well, clearly the way that you are a mother to Morgan. And I think that it's opened my eyes because you talk constantly about, you know, you, you don't want Millie and Mac to be perfect. You want Millie and Matt to be exactly who Millie and to be. And I think that that helps me look at my own children. Like I want them to be better at this or I hope that they do that when I just hope that they can be the best version of themselves.
• 19:49
  Speaker A: That they're they. That they are.
• 19:51
  Speaker B: They're their. And, you know, every night before my kids go to bed, I genuinely say to them, I hope you wake up tomorrow being the best version of yourself, because that's all you can ask your kids. And I think that watching Millie and Matt really helps truly put that into perspective. And I think it helps, you know, even you look at Morgan when, you know, you guys either have a high moment or a low moment. Like, Morgan's just being Morgan, and Millie and Matt don't know how to be any different. Like, no.
• 20:17
  Speaker A: And that's why I can shove their little high in Georgia gear. And from their auntie. Listen. And sometimes they're related, and sometimes they're.
• 20:23
  Speaker B: Like, yep, here she comes again. The auntie in the southern auntie who's obsessed with SEC football. Here we go again.
• 20:32
  Speaker A: But again, it's so great because, you know, Billie does love watching football, and, like, who knows, like, maybe she'll be a back. A back analyst one day for Jordan. All right, well, I love you the most.
• 20:41
  Speaker B: I love you the most. I'm not really proud of you for all of the. All the hard good things and everything that you're doing to educate and help other parents on this journey, which is not the end of the world, and you're going to get through it.
• 20:55
  Speaker A: Whenever we get to experience life actually together, it has reminded us that it's the good stuff. It's the good stuff.
• 21:02
  Speaker B: So it really is. They're the best.
• 21:04
  Speaker A: All right, love you. Love you.
• 21:06
  Speaker B: I love you. All right, bye.
• 21:07
  Speaker A: Bye. Okay, hold on.