Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Real Talk on Autism Parenting: Identity, Siblings & Support with Sarah & Casey

Transcript

Real Talk on Autism Parenting: Identity, Siblings & Support with Sarah & Casey · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:01
  Speaker A: This is the most casual of all casual episodes of the Inchtones podcast. I'm here with my friend Casey, who needs no introduction when it comes to my life, but she was. And I hope that every mom that is on their individual autism mom or parenting journey finds a Casey. Because we get it, don't we?
• 0:21
  Speaker B: We do. We get it.
• 0:23
  Speaker A: We get it. Casey, tell everyone a little bit about yourself.
• 0:27
  Speaker B: Sure. So, like Sarah said, my name is Casey Kozicek. My son Colin is 10 years old, and my daughter Julieta is 8 years old. And Colin is on the autism spectrum. He was diagnosed when he was three years old. And at that time I was working as a school counselor. And pretty shortly after his diagnosis, I kind of resigned. Not kind of. I did. I resigned, not fully, to really lean into all that was going on with him at the time, which is very.
• 1:02
  Speaker A: Typical of what, yeah, happens. You know, it's so much more than just like a pivot.
• 1:09
  Speaker B: Yeah, yeah. This was like a major kind of like, overhaul of, you know, what my life looked like at the time. But like I said, I was a school counselor, so in my mind, that was a role that really required me to be fully present and giving my best day after day. Uh, and that was beginning to become impossible. Lucky for me, at the time, my boss was very aware of everything that was going on and was just like, so, so supportive. And basically when I went and told her, like, that was it. We were also friends prior to working together at that particular school, she was like, you need to do this. Like, there's no question. So that was a nice little, like, push that I needed at the time. But, yeah, so I did that so that I could really fully jump in with both feet, if you will, to what was happening at the time with Colin, which was just intensive therapy, getting an understanding of what we were working with, what we were dealing with, and making sure that we were doing everything that we could as quickly as possible. Because I am the type who, once I knew there was, like, a task that had to be done, I had to really do it to the best of my ability and make sure that all of the boxes were checked. And until I did that, I, you know, I would not rest well.
• 2:18
  Speaker A: This is what's so interesting about, like, both of us being tasked with this life changing diagnosis for Millie and Colin are only months apart. Right. I think they're only months apart. And thinking about knowing that I have a typical older daughter, I get hives. Because I think that the story that we're sold as young women, when anyone Else thinks of a three year old in motherhood. This is not what you think of. What you just like the trajectory of what you just said of. I leaned all in. I had this task list to complete. I've got early intervention. I've got behavior therapies. When I hear it, I know I went through it twice. I picture like a three year old and you just don't have that understanding until you go through it.
• 3:01
  Speaker B: Yeah, I think there's no way, like, there's really no way. Even I can totally relate to what you're saying in terms of like, I did that. But like, at the same time it still seems like what? Like what?
• 3:12
  Speaker A: Yeah.
• 3:13
  Speaker B: And I think though, when we were in it and you and I are similar in a lot of ways in that we're like just doers. We just did it. And a lot of people at that time would say, like, I don't, you know, I don't know how you're doing it. It's a lot. But I do believe that for the most part, when you're presented with something like anything else, you just do it. I do remember thinking as I was scheduling these therapies that were like, you know, one after the other during the workday. I had a one year old at the time, actually not. Julietta wasn't even one when like the therapy started. But I'm thinking, like, how am I going to do this? But it ended up being kind of like anything else. You just do it.
• 3:53
  Speaker A: I mean, I always say it's muscle memory at this point. If someone said to us those years ago, all right, you are going to train to be an olympic swimmer. And you're like, no, no, no, we don't. I don't swim, I don't swim. But here's the pool every day for eight hours and you're like, you can live. You can literally jump in and start swimming. Or you can just sit in the sidelines and kick and go, I'm not doing this. And they're like, cool, but whenever you're ready, the pool's there.
• 4:17
  Speaker B: You got to do it happening.
• 4:18
  Speaker A: Yeah, yeah, that always my answer is, you know, I could never do what you do. Yes, you could.
• 4:23
  Speaker B: Yeah.
• 4:24
  Speaker A: Yes, you could.
• 4:25
  Speaker B: Same. I feel that way too. Especially like with the types of people that we surround ourselves with. I know that they could and I know that they would. But yeah, it's a wild thing to think back on and just Compare like Collins 3 year old year, 2 and 3 year old year to that of like a typically developing child. It's just so different.
• 4:45
  Speaker A: So, so different. You know, one of the cool things that you and I share, and maybe, maybe it's the, I don't want to say the dark humor side of, of autism parenting, but you and I, you and I like, joke about, you know, people are freaking out about the election and people are freaking out about, I don't know, school days being canceled and added on to the end of the year and family trips are getting disrupted and you and I are always like, I really wish that was my biggest problem.
• 5:11
  Speaker B: Yeah. Yeah.
• 5:12
  Speaker A: And I guess it's not dark humor. I guess it's just really dry humor. But it really, you know, as you and I are sitting there waiting for general sedation for our child to get dentistry done, it's beautifully given us. This set of everything else just beads off like it just feeds off.
• 5:26
  Speaker B: Totally. And that's something that I try to take a moment and remind myself that I'm actually really grateful for that.
• 5:33
  Speaker A: Me too.
• 5:34
  Speaker B: I think that that was probably part of my personality prior to this, but now it is like basically the sum of who I am. Like, there are so many things that are not a blip on my radar that I know to other people are a really big deal. And listen, I am very cognizant of the fact that you only know the hard that, you know, it's all relative. Totally. But sometimes I'm really grateful that, you know, things that really ruffle other people. And when I say really ruffle other people, I mean those like, little day to day mundane things that some people, you know, have a really hard time with. I'm so grateful that that's not me.
• 6:16
  Speaker A: Yeah.
• 6:17
  Speaker B: But a lot of that is because, like, I've just become accustomed to not having the brain capacity or time to kind of work in, you know, a slot in my day to worry about that.
• 6:29
  Speaker A: Yeah. I mean, there's just, you know, you also are an entrepreneur and built your own, you know, company and finding time for the good work and purpose in life outside of being an autism mom is also really, really, really sacred. So I just have to. At some point I had to call an audible with myself on a lot of that and just realized definitely since Millie's diagnosis, like, I, if I don't do X or if I give attention to X, so many things that actually matter in my life are going to fall to the wayside and I don't want that.
• 6:59
  Speaker B: Yeah. Yep. Absolutely. There's only so much of us that we can kind of dedicate to, like these different causes. So. Yeah, you Pretty quickly start to prioritize your causes. And that's. I think it's a self preservation thing. And I also think it's just essential to like our basic human function and being like the best, but also like the happiest and most content that we could be in our day to day life.
• 7:26
  Speaker A: You and I both have a broad circle of friends and we also are quick to realize that we're a little bit outliers in the sense because of our children. And how do you feel important it is as someone like when Colin was first diagnosed, how do you find that you being who you are, is able to hold space for all of it?
• 7:46
  Speaker B: So I think that I was pretty lucky right off the bat just because we happen to live in a community where there are many differently abled children. And so some of those connections were organic. And then, you know, through different therapies or like online groups, our town's like special kids group allowed me to at least start to see names that looked familiar about people who were going through the same thing. I actually think the first time that I ever reached out to you, I think I sent this to you like a screenshot a while ago really was like.
• 8:20
  Speaker A: But ours was really through a therapist. I mean live through a therapist, but. But then that was like the secondary thing.
• 8:26
  Speaker B: Yeah, right, right. You met Sarah and I met through a therapist and then. But I think even before that you had posted maybe just in our towns, like general Facebook group, and I messaged you maybe about that therapist or about something else.
• 8:38
  Speaker A: Yeah, yeah, yeah.
• 8:39
  Speaker B: But so that, that was definitely a way to like connect with people and kind of have a village. But still, you know, my village and the one that I had built to that point, my friends, my family, there really wasn't anybody who had had like a similar experience. I do have a cousin who is my age who has cerebral palsy. And he, when we were younger, did physical therapy and speech therapy and ot and he lived near us. So that was a big part of my life because my. It was my mom's sister's son. So we were with them a lot. There were two other children in the family who we were with. So having that kind of built into my like psyche, if you will, was helpful. But in terms of like support systems and things like that, I would say like, it really is up to you to build one for yourself. And a lot of times that's easier said than done. And I think kind of the resources in place just in our like infrastructure in general leave a lot to be desired for someone who is kind of actively looking for a community, because I'm a pretty social person. So I think that helped. But the diagnosis time and things like that can be so isolating. Yeah. So I think that is something that there's a lot of work to be done there. There is.
• 9:56
  Speaker A: And I was just gonna say because what you hit on like googling your local mom groups, you know, finding special kid networks. I don't know about you, but whenever like Millie was first diagnosed and then like, you know, she was in ABA preschool and then Mac was getting diagnosed and it was like this, you know, having a typical older daughter, I remember like finding it so annoying that I was like, now in this bucket of people. I look back now, I remember being like, I don't want to be forced to be friends with people like this. Like, I still have this full life. And I think I had to really come to the understanding, like it wasn't bucketing me, it was just showing me who my people might be, you know, Like, I didn't want the identity at first. I was like, I'm going to dive into this, but I don't want this to be my identity. And I don't think I've thought about that for a really long time.
• 10:45
  Speaker B: I don't think I thought about that until right now. So hearing you say that, I remember having like that same thought. I don't really know. It's hard to put into words where it was coming from. But I was almost resistant to those like, aren't gonna.
• 10:59
  Speaker A: But we weren't resistant to our kids and helping them. We were resistant towards the response of others to like us being labeled as.
• 11:07
  Speaker B: A different kind of mom or. Yeah. And I actually noticed that, Sarah, you could attest to that, to this, because we're in the same boat as far as this goes. But moms and dads, I guess, of newly diagnosed children tend to reach out to us both or get connected with us in some way. And I'm always really, really careful about the way that I talk to them and the way that I share my experiences because I don't ever want them to think, depending on like what stage they're in. I don't ever want them to think that I am assuming or just making general assumptions that they're child is like mine. They're not there yet. You know what I mean? Because I remember having conversations that were in hindsight really helpful to me. But at the time I was like, oh no. Like they're thinking like, I'm like that.
• 11:51
  Speaker A: Like, like, like My, like, no, no, Millie's gonna talk. Like, we're gonna. Like, this is not.
• 11:56
  Speaker B: Yeah, we're not like them. Like, oh, God, I guess I gave them the wrong idea. Meanwhile, when I look back, I'm like, no, that. Yep, they. They were right.
• 12:03
  Speaker A: They were right. It wasn't like force fed. I think it's just the digestibility of the whole characterization of what we become as a parent. Once your child is diagnosed and then the actual life that you then live, literally, like day in and day out, these words are just like, so part of our 12 Hours of Awake time, you know, every day that at some point it just does become so normal. But at first you're like, yeah, that's not like what we're gonna do. Yeah.
• 12:31
  Speaker B: But now in hindsight, I'm like, yep, nope, that was right. You know.
• 12:35
  Speaker A: Yeah.
• 12:36
  Speaker B: Obviously with our own unique experiences peppered in for sure. But I love every inch of this now. Yeah, obviously it's not all positive and there are some really hard times, but it's funny to think that there was a time where I was so kind of vehemently opposed to what was kind of unfolding. I just think I.
• 12:53
  Speaker A: At some point along the line, I thought, this is giving me something greater than I can even imagine. Like, I know that the grind of this is. Is creating something in me that I know that I couldn't have gotten just by living. And I don't know what. I don't even know if it's purpose. I don't know if it's greater self awareness. I don't know if it's more aware of how precious time is. At some point, like in those earlier years where I was like, this has to come to something. This has got like. And it does. It is an awakening or sort of a realization that like, our children are not going to go through this world in the same capacity that we had or have. And shattering sort of these societal norms has cued me all these fringe positives that I never really saw before having Millie or Mac.
• 13:45
  Speaker B: Yeah, no, I totally agree. I mean, I think we can both be pretty positive that had it not been for our experience with autism diagnoses, there are so many parts of us that would have remained untapped. You know, listen, they were there, but without our children to kind of bring them out. Yeah. There's no denying that there are parts of ourselves we never would have known.
• 14:07
  Speaker A: My hope with this podcast in general is the newer moms, the newer dads, the newer grandparents, the newer caregivers that are like, what's going to happen with this relationship or what's going to happen? How do I navigate this? I firmly, firmly believe that the diagnosis of a child is just a way to start the journey that you're still getting to navigate your, the ship of your child's life. It's just that you now are on a different river or a different ocean, but you're still in charge. And so it just sort of informs you of who they are.
• 14:40
  Speaker B: Yeah, totally. So something that someone said to me, I think it was my boss actually at the time when I was a school counselor, she said, she said you walked into that appointment with the same kid you walked out with. And that was so helpful in that moment. And still to this day, like I.
• 14:57
  Speaker A: Say that to people, you walked into that appointment with the same child that you left that appointment.
• 15:02
  Speaker B: Exactly. So before you got that diagnosis, you walked in with Colin and you walked out with the same Colin. So the label is one thing and it's something that we need to help us get services that are necessary. But ultimately what you said is so true. You're, you are, you're steering the ship. You're just, you're going down like a different river. And maybe it's like a, what do they call it? Like a. Has more rapids, a stream.
• 15:31
  Speaker A: It's got a stream with rapids and.
• 15:32
  Speaker B: Sharp rocks and like extra rocks. Sometimes the stream stops because there's not enough water.
• 15:37
  Speaker A: And then you pick it up and you walk it. Yeah.
• 15:40
  Speaker B: Sometimes it rains and the stream is really.
• 15:42
  Speaker A: Maybe this is the new analogy where like everyone else is on a yacht in Lake Como. We're like, with our dinky rafts, stream. But you know, like they always say like a fish in water doesn't know he's in water. Parents of typical children don't know the things that we know. They don't. Like we were fish taken out of water and we're like, holy shit, we're fish.
• 16:03
  Speaker B: Yeah, totally.
• 16:05
  Speaker A: And then you learn more about being a fish because you're not in this vacuum.
• 16:08
  Speaker B: Exactly, exactly. It reminds me of people used to ask when Colin was younger. He still has a pretty intensive therapy schedule, but it was really intensively. Yeah. And they would say like, well, how does he do with it? Like, is he okay? And I would say, well, it's all play based. But also he doesn't know any different. So it's not like I ripped him out of his like, you know, relaxing life one day and said like, you're going to therapy. He doesn't know any different.
• 16:31
  Speaker A: Right.
• 16:32
  Speaker B: And I think that's a big part of it. But I think, you know, what I would ultimately say to a newly diagnosed mom or family in general is just that you are still in charge. Your ship has some different mechanisms that you need to become familiar with, but once you do that, you will continue to be the very best advocate and mom for that child and mom, you know, or dad. And you just will become keenly aware of your power as time goes on, and you need to use that to your advantage.
• 17:02
  Speaker A: It's also made us better moms to our typical children.
• 17:07
  Speaker B: Yes, I like to think so.
• 17:08
  Speaker A: To use your words, like. Like keenly aware of my parenting because of how I've had to lean in so differently than I thought with Millie and Mac. Without a doubt.
• 17:19
  Speaker B: Yeah, that's definitely a huge part for me. Julieta, my daughter, who is typically developing, is younger than Colin. So that was interesting. It was a really interesting journey, because since Colin was our first. When Julieta came along and started, like, pointing and talking, I'll never forget.
• 17:37
  Speaker A: Well, it's like a first. It was like having a first child.
• 17:39
  Speaker B: It was crazy. Like, we already knew that something was different about Colin. And I'll never forget we were getting Julietta ready for a bath, and we were, I think, like, in our linen closet. I don't know why we were both there, but she said something like. I think it was like, towel bath. And we looked at each other like shit. Like, this is what's supposed to happen.
• 18:01
  Speaker A: Because, like, oh, my God, you're a genius. Right?
• 18:04
  Speaker B: Look what you say.
• 18:05
  Speaker A: Look what you're doing here.
• 18:07
  Speaker B: Yeah, so. And then from. I would say, I guess from that moment on, I understood, you know, really kind of like, the differences and the parallels. But there, I think that Julietta, her experience with me as her mother, I hope, is kind of enhanced because I'm also Colin's mom.
• 18:25
  Speaker A: Like, I don't hope that Millie and Mac will talk like I have. I set up life so that they can communicate. But I. But if I. If I use the word hope, like, I do hope that Morgan and Julietta look at us and think, like, they took a situation and became the mothers they are because of the differences that our siblings handed them.
• 18:42
  Speaker B: Yeah, absolutely.
• 18:44
  Speaker A: They're gonna know the difference in strife and in grit.
• 18:49
  Speaker B: Definitely. There's no doubt about that.
• 18:51
  Speaker A: I mean, they're emotionally so beyond their years because I think they just have to pick up on the things and idiosyncrasies of their siblings, you know?
• 18:58
  Speaker B: Yeah. Oh, absolutely. I mean, that's something that's I'm constantly reminded of. Julietta will stop me in my tracks if I'm, you know, having a day where I have a little less patience than usual. She'll say like, mom, he has special needs and it kind of like pulls him back down to earth. And I'm like, right, right.
• 19:15
  Speaker A: Thank you for that reminder. Come back. I know. Well, listen, we showed up big time, but like to know where we are, you know, living where our feet are firmly planted, built beautiful lives. Even given these curveballs, I think it's just a testament to what other newly diagnosed parents and families can use as just an example of it's going to be okay.
• 19:39
  Speaker B: Yeah, I think that's the biggest thing. And I am very proud of us too. And I, I, I totally agree with you and echo your sentiment. It is going to be okay. And that doesn't take away, you know, Sarah and I don't say that to be trite or to take away from what goes into it all being okay.
• 19:53
  Speaker A: I mean, I still changed a pull up of a nine year old. Right. Let's not, let's not kid ourselves.
• 19:58
  Speaker B: Yeah, yeah. But ultimately it will be okay. And it will be okay. And your family and your child's special way and you know, those reminders and, and I always like to hear and listen. Sarah and I both follow and, and kind of subscribe to so many other parents and individuals with autism themselves just to hear about different experiences. Anything that I can do to help you kind of put that out there and, and just be another resource, you know, I'd always be happy to do.
• 20:31
  Speaker A: I know that social media gets such a bad rap about like TikTok and Instagram and, you know, all these social platforms. I think for mothers such as ourselves, we do have the goodness part. The little corner of goodness of social media is really recognizing that you're not alone in this special needs parenting journey.
• 20:49
  Speaker B: Oh, yeah.
• 20:49
  Speaker A: And that in and of itself makes it feel even virtually less alone.
• 20:54
  Speaker B: Totally. I can't tell you how many times I've gone to, I don't know, Pinterest or Instagram for like, literally words of wisdom and inspiration that I need in that moment, whether they're special needs related or not. But usually it's always kind of coming back to that. So. I totally agree. I think there's a lot to be said about the community that you can make from social media, especially for special needs parenting.
• 21:19
  Speaker A: All right, well, Casey, thank you for those.
• 21:21
  Speaker B: Thank you.
• 21:22
  Speaker A: Midday conversation coffee chat. We'll have to have another one where we can bring maybe the girls on, you know, or what they think about our special needs parenting. I'm sure they'd have a lot to say.