Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Autism Grief, Expectations, and Letting Go | Shannon Korza

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Autism Grief, Expectations, and Letting Go | Shannon Korza · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey everyone. Welcome back to the latest episode of the Inchtons podcast. As you know, I have been so blessed to connect with the four ladies from the momstalk autism podcast and platform. And being able to share and listen and hear testimony of their one on one experience from diagnoses on through their current day with their autistic children has been such a gift to the Inchdomes community. And I am thrilled here to have Shannon Korza, mom to Gracie and hearing about Shannon even before we press record, talking about just these massive societal expectations that we have whenever we have a child that's diagnosed with autism. And that journey is where we're going to begin here. Shannon, thanks for being here today on inchduns.
• 0:42
  Speaker B: Thank you for having us. We just love chatting with you. So I'm glad we all kind of jumped on with this.
• 0:47
  Speaker A: I selfishly get wrong one time. So what we said before we press record, take us back to the beginning. What did you feel when you first had the diagnosis for Gracie?
• 0:58
  Speaker B: Yeah, I, you know, it's funny because before they ever tested her for autism, they tested her for hearing loss because she was not responding to her name. Right. And I had told all the doctors, like, she doesn't have a hearing problem because if she hears Mickey Mouse, she comes running. Okay. Like there's not a hearing problem. And so I feel like for a while I kind of use that like as a, okay, she's not autistic. She has a hearing problem. Like it's a hearing thing. There's something going on. And when we first got the diagnosis, I, unlike my co hosts, I was in denial. I could not even bring myself to say that she was autistic. It was like the A word. I couldn't say it out loud. And you know, looking back now, you know, or you know, seven, eight years later, I know that that had nothing to do with her, but it was a hundred percent to do with me. I was 10, terrified. I, I knew how to raise a neurotypical daughter. I'd done it before.
• 1:54
  Speaker A: Yeah.
• 1:55
  Speaker B: And I was just in that instance, petrified that I was not going to know what to do. I wasn't going to be enough for her. Like, I already felt like I winged it with my first one anyway. I was young, right? Like, and, and then she was neurotypical, right? Like if I'm winging it with a neurotypical child, I was just broken and I wouldn't admit it. I didn't even tell my husband. I don't think that I was broken. It would, you Know, I rocked Gracie to sleep every night. Like it was just our thing. I rocked her to sleep every night. I knew she was gonna be the last baby. I put her to bed, and there would be nights that I would literally just sit next to her little toddler bed and just cry. Like, I would just cry over her at night. And again, I just. I knew she was the same. Like, she didn't change. Right when she got the diagnosis, she was always the same little, great, hilarious human that she had been. Um, I think it was just. I didn't understand what the expectation on me was going to be, and I was so, so afraid that I wasn't going to live up to whatever it was.
• 2:53
  Speaker A: When you look back on that, do you feel like you almost feel robbed of the possibility to sit in the different kind of path? Like, that the gap is what caused the friction that you were sold so. And lived this typical motherhood with your oldest, and then the diagnosis shifted, put you in another lane. But we've never. We've never been sold as a culture of. In motherhood to just accept the different lane or that the different lane is going to be okay.
• 3:24
  Speaker B: Yeah. And it's funny because, I mean, Gracie is about to turn 11, and I still grieve things. Like, when I had Maya, I was 23. She was like my buddy. We did everything together. We did all the tailgates together. We go to dinner together. And there's, like, so many things that I. I can't do with Gracie. And I still grieve that, like, very heavily to this day. And it's interesting because Gracie has no desire to do the things that. So it's not like Gracie doesn't care. Right.
• 3:51
  Speaker A: Yeah. I mean, similarly, like, I. We're. We're actually the most similar of any of the other. Like, your mom's, like, autism ladies, that I have a typical oldest daughter. And then Milly So there. That is exactly the same kind of reality that I had where I was. I had this, like, typical little toddler who was just like, this is great. Like, we can go to brunch. We can have girly time. We can. Yeah. And then the. The. The rug ripped out was more on me than it was on Milly Milly doesn't care to do those things.
• 4:19
  Speaker B: She doesn't know any better. Like, she's living.
• 4:22
  Speaker A: Maybe it's also just this, like, beautiful proof of, like. Well, does that really matter?
• 4:27
  Speaker B: I know I always say, like, I wish I could just. I. The amount of money I would pay to just live for an hour in Gracie's head to just see the world the way that she sees it. I don. I mean, I. I don't know. I've come to this place as I've gotten older and I've, like, experienced real grief, losing people who are really close to me as we get older, going through the autism journey. And I. I actually have, because we had a baby monitor in Gracie's room. I have, like, a snapshot of me one night over her bed just bawling. And I have to say that, like, while it's really, really sad, I have really. I don't wanna say that I, like, love that grief moment or that feeling of, like, brokenness, but there's just something really real about being broken and allowing yourself to be broken and, like, not feeling the shame behind it.
• 5:18
  Speaker A: Say that again. That's a. That is so spot on. It's that you're. Yes. It's not just feeling the moment of grief and sadness for yourself. It's that it doesn't have the shame attached to it.
• 5:31
  Speaker B: No. And I can. I can look back at that now. Like, if I had seen that photo maybe five, six years ago, I may have felt differently. Right. And they, you know, social media in your phone, so it always pops up, like, year after year. Right. Which is a blessing and a curse at the same time. And so I think now that I've experienced other real, true grief, I've really learned how to just sit in sadness and sit in grief and sit in sorrow. Not that I want to stay there for too long. So I don't know. I guess I kind of have this perspective of maybe not being robbed, but just a different life path. Right. Like, I've gotten to live two very different life paths with both of my daughters.
• 6:08
  Speaker A: Yeah. You know, when do you think that greatest internal shift happened where you realized that you were holding this differently than you were?
• 6:18
  Speaker B: At the very beginning, I had this. So growing up, Christmas was always a huge thing. Like, my grandparents always made Christmas this amazing thing. We had, like, all of these traditions, yada, yada. And I've kept those up with Maya, and I was planning on keeping them up with Gracie into some extent. We do. But the moment, everything really, really shifted for me. I want to say Gracie was probably three. I think she was probably three. And we were at a Christmas event. And, you know, we were there with friends and my cousin, who both. All of them are very close with us. So Gracie can be her crazy, Milly self with them. But I was still, like, new. Right. Gracie got diagnosed right before her second birthday. I think. And I just always had it envisioned on exactly how these things were going to go. And we were going to take the photos with Santa and, you know, Mrs. Claus, and we were going to do this, and we were going to have c. We were gonna. You know, and everyone was in line for Santa. And Gracie wanted literally nothing because I wanted.
• 7:12
  Speaker A: This is gonna resonate with so many people.
• 7:14
  Speaker B: Yeah, she just. She wanted nothing to do with it. And she, you know, I. For some reason, had this grand idea that it was gonna go swimmingly. And I didn't bring a stroller, which I have an eloper. So I don't know what made me really feel like that was a great idea, but, you know, wishful thinking. And she kept running off, and she was just, like, more interested in running around this tree than she was of participating in anything else. And it became a point where it's like, okay, I'm gonna have to go back and get the stroller because there's a. Like, an electric train that runs through, and it's like, now it could be, like, a safety problem. And I just remember leaving her with my cousin while I walked back out to the car to get the stroller. And I just broke down. I was, like, at the back of my Jeep, and I was getting the stroller out, and I just sat in the back of my SUV and I just bawled. Like, I just bawled. And I knew then and there, like, I have to shift my perspective. I can't. Like, I cannot keep forcing my ideas of what these events are going to look like on Gracie, because she's different. She doesn't want the same things. And that was really. I have this Facebook post that I made that comes up every year. Like, we were talking about where I'm holding a glass of white wine. I'm, like, sitting by the Christmas tree. And again, God, I. I cry a lot. If you knew me in person, I don't cry a lot. But I. I was, like, in tears about that. And it was just this breaking moment where I knew I had to stop. Yeah. Yeah.
• 8:42
  Speaker A: Did you ever. After those more memorable moments of grief and sort of collapse and acknowledging that this is going to be so transformative in ways you don't even realize. Is there any part of you that still wakes up and thinks this is really unfair?
• 8:57
  Speaker B: A hundred percent. I am not. Okay. And I hopefully. Well, I'm gonna make someone mad. Cause you always make somebody mad. I am not an autism as a superhero mom or a superpower mom. I'm not my husband. And I have had this discussion so many times that if we could somehow start over and have Gracie be neurotypical, would we? And the answer is yes. And it's not. We're not saying that for us. Like, my daughter's life is harder. I had a moment this weekend where we had a birthday party for my sweet little niece. She turned one we hosted at our house, and Gracie tried to play with one of the other little girls in the pool, which, by the way, is not something she does very often. And the playing looked different, and it made the parents really nervous, and it scared the little girl. And we saw the whole thing. Like, there was no. Gracie wasn't trying to hurt anyone or anything like that. No. It just looked very different. And my husband and I's heart broke. Like, we're like, she's just trying to play with this little girl. Like, why is it so hard? Right. And so I'm not. I'm not. I'm just never gonna be that mom. That is like, autism is such a wonderful gift, you know, because it creates
• 10:08
  Speaker A: the stacked struggle that I believe I actually, probably, similar to you, I'm no longer in the camp of autism as a superpower. I believe that there's gifts that rise from pain and growth in having a reality that is so not expected. But autism itself is not a superpower. I think what it reveals to us as typical humans can be seen as growth and perspective. But I think when you talk about the play, I similarly have a lot of very guttural moments where my daughter is simply trying to engage, and it is awkward, and it's socially unacceptable, and it ends up creating another wave of deep grief that this little girl can't even be seen in her desire to play. And so then it.
• 10:59
  Speaker B: Well, that. And, like, what type of reinforcement did she just get? Right. So it's like she's trying, and then she got negative reinforcement, essentially, for trying.
• 11:09
  Speaker A: That's right. That's right.
• 11:10
  Speaker B: Right.
• 11:10
  Speaker A: Which. Which psychologically, Gosh, I could go down the rabbit hole on this from a parent. Children seek that even. Even the other girl that she was actually probably attempting to play with, too. There's all these feedback loops, negative and positive, happening at the same time.
• 11:24
  Speaker B: Yeah. And it's like, did anyone sit down and talk with the other little girl about kind of what happened? No, I guarantee probably not.
• 11:31
  Speaker A: That's a jump. That's an amplification jump. In typical parents being asked to do something that they, for all intents and purposes, don't have to do. That's something that Also rises a lot, I know, within your community and mine is that none of this. The community support does often come down to others living it and not those outside the arena. And it doesn't mean that it's. That it's bad. It's just that asking someone to jump into a reality that's not theirs to be lived is such an ask on a capacity level that most just don't choose to do it. Not because they're cruel, not because they're evil, but because they've never been conditioned to think that that other reality exists for a chance for growth and development.
• 12:12
  Speaker B: Well. And it could have been such a good learning experience for both sides.
• 12:15
  Speaker A: I know.
• 12:16
  Speaker B: And I think, too, you know, this was not my acquaintance. It was an acquaintance of my cousins. Right. So, like my friends, I would. I would have no problem sitting down with her children because we do talk about Gracie and her diagnosis very openly. We want them to be able to ask questions. We want them to be curious. And so in that instance, it's. It felt a little weird jumping in because it wasn't my relationship. Right. I guess. But, yeah. So it's like, you know, there's still things as recent as Saturday that just feel like it kicks you in the gut.
• 12:50
  Speaker A: How is your older daughter's relationship with Gracie now, and how has that evolved?
• 12:56
  Speaker B: She's very protective. Actually. That whole thing this weekend made her actually really angry. Like, Maya is very protective of Gracie. And when she was really upset after everything happened on Saturday, and her words were. And she was mad, and she was like, I can't even come up with the words that I want. But, like, when people look at my sister like she's a freak, it pisses me off. Yeah. And she's like, they don't even know her. They don't know how sweet she is, you know, and she's. She is. She's just. Because we know Gracie and we know her heart. Right. So it's hard. Like, sibling relationships are so difficult because I. They have to help so much. They have to grow up so fast. And I try very hard to remember. And I tell my husband a lot, like, Maya is not her mom. It is not her responsibility to do these things. Like, in a sibling relationship. Yes. Like, I was a big sister. I babysat. That's life. We all help out. We all do these things.
• 13:50
  Speaker A: Right.
• 13:50
  Speaker B: But then at the same time, Maya and my cousin Heather are the only two people in our life who we can trust day to day with Gracie
• 13:58
  Speaker A: all the time, because they see the inside, the walls the insular. What I believe is almost an extension of this maternal instinct and data that siblings have for their narrative deeply, you know, autistic siblings, is that they're. They're tracking the micro patterns that really no. No teacher, no therapist, no educator, no community member, no typical babysitter would ever pick up on. Not because those babysitters or those helpers would be bad, but that Maya is essentially. Has been an environment that trained her to see things that a typical sibling wouldn't. And that is both a blessing and a curse.
• 14:38
  Speaker B: Yeah, it is. And there's. Maya has her own grief around it, right? Like, she sees her friends, you know, going to the nail salon with their sisters, you know, and she's like, I wish I could do that with Gracie. Right. And so she has the grief all around, you know, all around.
• 14:53
  Speaker A: My. My daughter came home. My Morgan came home a couple weeks ago and said, you know, I'm really. We're talking about college entry essays. And I'm thinking in seventh grade. Okay. Essays. And all of my friends. Right. All of my friends. Okay. So there's always grand. You know, all my people say, gosh, you're going to have such an easy time with how hard your life is. And she was so mad. She was like, it's just so. So you're saying I'm gonna have an easy essay entrance time day into college. Cause my life's so hard. I'm like, okay, let's. Let's strip it down. Friends are your same age, and they're trying to relate and say, we see you, Morgan. We see how much you carry. But a typical teen and big sister doesn't want to feel that. They just want to be seen in the minutiae of everyone else and struggle with a college entrance essay. Right?
• 15:39
  Speaker B: Yeah, I know. Eminence. Got that. Like, so. I don't know, there's just something so, like, oh, it's gonna be given to me just because I've happened to live this life.
• 15:48
  Speaker A: Right. That's right.
• 15:49
  Speaker B: Right. It's like, no. Like, I've also earned this. I just also write an essay. Right. Like. Yeah, I know.
• 15:56
  Speaker A: Where do you feel like you personally have. Have expanded as a. Just. Just simply as Shannon, you know, I know a lot of this is so difficult, and we're treading through muck and behaviors, and, you know, I always say it forces me into the present more than I ever would have probably wanted to. But what has been the greatest skill that you've gained through the pain and the hard.
• 16:20
  Speaker B: I have. I. I've said on our podcast before, like, I used to be the mom in Target. That would be like, you clearly do not discipline your kids. And then God was like, here's Gracie, right?
• 16:36
  Speaker A: And so hold my beer for one second.
• 16:40
  Speaker B: He's like, yeah, let me. Let me show you. And so. And I think it's because, like, I grew up in a pretty. I don't know, my parents were wonderful, but, like, there was discipline. There was, you know, and then that's how I raised Maya. And Gracie came along and I am. I have. I always tell people I'm like the best friend to have because your kid can do the weirdest things around me. And I'll be in the background, like, whooping it up like Arsenio. Like, you know, like, I have. I feel like I've seen it all, right? And so I am just a lot more open of a person. I am much less judgmental of a person. I see that mom in Target now, and I, you know, give her a little, like, I see you thumbs up, like you're crushing it. It's. I get it, you know, especially with autism, because our kids, you know, Gracie doesn't present like she has, you know, any type of diagnosis. You look at her and you would never know. And so I think that that's. It's hard for parents who are in a store and they're child's having a sensory meltdown and nobody around them understands what's going on and that sort of thing. And then I have also. I have learned to celebrate the tiniest things. And my husband shared a Facebook memory the other day, and it was Gracie at speech therapy when she was, quote, nonverbal, non speaking. And she was playing in the ball pit with her therapist, and she stood up and she says, ah, nuts. You know, and it was like this big, huge win. And it was like the cutest thing. And she's a Mickey Mouse Stan. And it was an episode where Donald Duck says on nuts, right? And. And it actually has made me a little sad looking back on Maya, because I was like, how do we celebrate the tiniest things for Gracie? Like, how many of those tiny things did we take for granted?
• 18:22
  Speaker A: I know. I think about that so much. I mean, again, Inchstones was like the thing over milestones, right? That. That rose for me in this just this crazy whatever, you know, platform and way I'm living. But it really does. There is. There is a. It's a soreness a little bit about what I might have missed with my oldest. Like, where was I so focused on Achieving the dream or the white picket fence life that I was so hell bent on, the photo and the vision of it that her smallest of moments, I absolutely know I was not as aware, and it doesn't make it wrong, but I do think now maybe there are things that I get to witness in a better place because of what I have to do with the younger two.
• 19:12
  Speaker B: Well, and I think we just notice things. So, like, I will notice things in my friend's children who are neurotypical, right. And just, like, celebrate those tiny things. Like, maybe they just made this really great choice. Like, maybe we're playing at the park and they did something that it's like, that's so outstanding, but other people don't really notice. I think we're so trained to look at. I feel like we're always on, which is exhausting. Right? Like, just that hypervigilance that we have to have. But then there are some little benefits that come with that, because I think we do get to pick out those things that a lot of people do miss.
• 19:45
  Speaker A: Now, like you said, you. Gracie's almost 11. Or she's 11.
• 19:49
  Speaker B: She'll be 11 in June. Yeah.
• 19:51
  Speaker A: For eight or nine years. What do you. What do you tell? Or what would you tell a mother or caregiver who is just receiving that diagnosis if they come to you and say, shannon, what am I supposed to do?
• 20:04
  Speaker B: Yeah, throw the timelines away. I was so hell bent on timelines, and Gracie just stuck it to me, man. Like, she just. And I laugh because she's timeline mom
• 20:14
  Speaker A: and I raise you a real sensory diet.
• 20:17
  Speaker B: Yeah. I, you know, she just stuck it to me, like, everything that I ever thought should be. She was like, yeah, let me show you something else. And I was just so hell bent on timelines and things that needed to happen. And are we behind or aren't we behind or how many hours of speech therapy are we doing? And Gracie has done almost every single thing that I was worried about in her own time. And I was so worried about it not being now or not being by this time or not. I was so wrapped up in that. But she's always come through. Like, she's. She's always figured it out. I just, I remember sitting at our first, like, in home, you know, speech therapy thing and then just saying, like, I just want her to be able to communicate with me. Like, I just want. I want her. If she needs something, I want her to take my hand and take me to the fridge.
• 21:10
  Speaker A: Yeah.
• 21:10
  Speaker B: It doesn't even have to be words.
• 21:12
  Speaker A: Yes.
• 21:12
  Speaker B: I I just need something. And then now, like, she's texting me from her iPad. She asked me last night she wanted to go to Texas Roadhouse. Right.
• 21:21
  Speaker A: Wow.
• 21:21
  Speaker B: I think back of all of the worry and all of the stress that I put on myself when she wasn't doing things on the timeline that I had. And I think, like, how much more joy could I have had in those moments if I just would have released it?
• 21:35
  Speaker A: Yeah.
• 21:35
  Speaker B: And it. It doesn't mean we're not working. It doesn't mean we're not doing speech or we're not working on communication or all of that stuff. I just. I think there could have been a lot more joy in the process if I just let go a little bit and let her do her thing.
• 21:49
  Speaker A: Yeah. And I think that the more mothers that are earlier on in this, that are fighting this desire, whether it's conscious or unconscious, to keep moving, keep going, keep, you know, chipping away, sometimes that's rooted in the. I don't know for me, and I think I can speak for a lot, that maybe if I go faster and faster and keep moving on it, maybe we'll catch up. And I. That there is this, like, baked in need to lay down and let go of catching up. Because the catching up is actually only based on that. That child catching up to.
• 22:25
  Speaker B: And who's it benefiting? Yeah, the catch up race. Like, who does it benefit? And I think the other thing, too is, like, just because your child qualifies for 40 ABA hours, it doesn't mean your child has to do 40 ABA hours.
• 22:38
  Speaker A: Mm.
• 22:40
  Speaker B: You know, IEP goals for us are no longer. I mean, there's some educational based IEP goals, but, like, one of our IEP goals is when asked, what's your name? Gracie can answer what her name is. And when asked, what's your address? Gracie can recite her address. Like, and I think you just have to get to that point where you realize, like, there are ways to tailor what your child needs, and you just have to kind of throw away the rest. Like, the rest of it doesn't matter.
• 23:10
  Speaker A: And I think that you're. You're hitting on something that I'm so glad is rising as we end this conversation, is that your needs, like Shannon and your family for your daughters, specifically for Gracie and then your husband and then Sarah and then, you know, Brit and all these other people, like, whatever those needs are for your family, that's okay to have those needs. If your need Gracie, based on your life and your world is for her to attempt to achieve that, that's right. And good. No one is here to, to force a skill or ability that doesn't fit for your family. I think that's true for like any typical family in, you know, especially in the United States of like. Well, that doesn't work for my family. This does work for my family. If Milly is able to say my mom is Sarah and her numbers, blah, blah, blah, blah, blah, that's huge on a device. Right. But that might not what aligns for someone else that's getting a diagnosis and they want their Chevex be okay with the fact that you don't need to want or desire a skill or a behavior or like a growth to be what someone else wants. It's okay for you. I'm trying to think of something that was important to me that probably wouldn't be important to someone else, like Milly walking the dog around the neighborhood. I just really wanted her to be able to hold the leash. Cause I felt important for her to get her legs moving every day. That doesn't really probably echo with a lot, but for me it does and for my family it does. And so I think you're such a good reminder of saying in those IEP meetings, in those one on ones where you're the advocate for, for Grisie and for your family, what works best for, for you is important.
• 24:42
  Speaker B: Yeah, it does. And we're the ones that have to live with it. Right. Like this is our life every single day. And most of our team does not go home and live with autism.
• 24:51
  Speaker A: No.
• 24:51
  Speaker B: Right.
• 24:52
  Speaker A: Shannon, thank you for this beautiful conversation. You're so real. You are, you are my girl. I, I, I, I'm like, where is our coffee? Right next to each other. But I, I think that you're you and the other MTA ladies illuminate so beautifully how much support is within, within a group of autism moms, but how unique each journey is and how the emotional roller coaster but the emotional journey and like the timeline are all so different for women and mothers experiencing the exact same diagnoses. And that should be beautifully. I hope that the more in which we have these one on ones, it can be beautifully freeing for any mom on their own.
• 25:26
  Speaker B: Absolutely.
• 25:27
  Speaker A: All right, well, Shannon Corza, thank you for being here on Inchstones today.
• 25:31
  Speaker B: Thank you for having me.
• 25:32
  Speaker A: All right, everyone, until next time here on the Inchstones podcast,