Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Profound Autism and Letting Go of Expectations with Autism Mom, Alyssa Sieira

Transcript

Profound Autism and Letting Go of Expectations with Autism Mom, Alyssa Sieira · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey, everyone. Welcome back to the next episode here of the Inches podcast. I'm here with Alyssa Sierra. She is a mother in my extended group of support and autism moms here locally in New Jersey. But most importantly, she is the mother to Gabriel. And Gabriel is a young little boy around max age who also has a diagnosis of autism. And what I love being able to focus on and share and illuminate this month of May is the one on one conversations, the lived reality on the ground, what actual mothers that are sitting here on the front lines in the trenches of severe and profound autism and what that actually looks like. Because when I was starting along my own journey years and years and years ago, I just wanted to know, well, what does the other mom feel? What's the mom that I didn't even know existed? What does she feel a month into this, a year into this? So that's why I'm doing these, these interviews this month. And Alyssa, thank you so much for being so willing to be vulnerable and share yours.
• 0:56
  Speaker B: It's exciting, you know, so thank you very much for giving us a voice because, you know, it is very different and very difficult, especially when you have kids that have profound autism. Like I was telling you before, don't take anything away from, you know, higher functioning or whatever, you know, however you want to place it. But it is, you know, we as moms worry about our kids, safety, the future, I mean, regular things that everybody does as well. But it's. It is different for us because we know our kids don't fully understand. So that's the thing, you know, that I think getting it out there is a great place to start, at least,
• 1:41
  Speaker A: you know, it's my honor and it's what sat on my heart as an admission as soon as I was able to give back. Take me back. Alyssa. It's hour one day one week one after Gabriel received his diagnosis of autism. What were you feeling in those first moments?
• 1:57
  Speaker B: So he was. He was diagnosed at 2. It was like a month after his second birthday, October 7, actually, of 2020.
• 2:07
  Speaker A: Isn't that crazy that those dates you remember.
• 2:10
  Speaker B: Well, I remember it because then the next year, on the exact same day, one year apart, I got diagnosed with Ms. So it was. It's shit, you know what I mean? But in that moment, dad and I already knew. So to me, it was just a solidification on what we as mother's intuition, parents intuition, whatever you want to call it, like you were talking about, we sort of knew. So I, in that moment, I was very strong. I didn't Cry. I remember I didn't cry for, like, weeks until, like, weeks after. It was more like, okay, let's get it started. Let's start down the path. What do we need to do? Let's get in touch with the social worker from Children Specialized. Let's get names of ABA centers, let's get another doctor appointment, things like that. It was more. I was very tunnel vision, focused on what's the next step. Let's do this, this, this. Because that's the type of stuff that gives me, like, anxiety is okay, now. What do we have to do now? How are we.
• 3:14
  Speaker A: Once you had that diagnosis, you felt like you could get the plan moving.
• 3:18
  Speaker B: Exactly. And I think also because I've been through a lot in life, like earlier in life and stuff like that, I'm better at the big things, which just like a personal thing, I don't know. Doesn't mean I never get, like, upset or anything. But I'm better at the bigger things than, like, the smaller things give me anxiety. I don't know.
• 3:38
  Speaker A: No, I. I understand that a lot. Like, like, what do you.
• 3:41
  Speaker B: What.
• 3:42
  Speaker A: So if the harder. The bigger overarching theme was, was like, able. You were able to digest that and to process that. And the harder part being sort of those, like, little pivots all the time. And what, like, you know, what's next? What's next? Those are, you know, sometimes for me, they're paralyzing. Cause it's so much logistical. Right, but what did you. What, what were the. What were the small little things that were most emotional for you?
• 4:06
  Speaker B: Then we have a big group of, like, my husband's friends and everything like that. And they're like very close knit. And we're like, the wives are all very close and stuff like that. He's had them since, like, high school. So it's like a big. And now we're all growing and have had kids and stuff, so there's a ton of us, probably. I remember the first time I sat down with his best friend and his best friend after the diagnosis, that's when I cried. And it was like weeks after just talking about it, like, talking about the. What needs to happen and, you know, what the doctor said and stuff like that. It wasn't so much as him being autistic. It was more like explaining it to people that are big parts of our life, I think. And even like my family in New York and stuff like that. Just explaining like, yeah, there's gonna be challenges and, yeah, people that don't know.
• 4:59
  Speaker A: And I think Like I was talking to a mutual friend of ours for a different episode and saying like, it's almost like the. When you share it, like how you were sharing it with your, you know, your, your friend in a, in a more social setting or like with a family. And you have to preface it with like, I'm no longer on this like typical motherhood journey. Like I am now. I've now jumped into a. Unto a road that society or culture or like, you know, whatever, media, whatever has never really taught me what I should think about this. Like, I'm gonna be a great mom and I'm gonna keep moving. But like, I don't know what I don't know. And I'm no longer next to you. Like I'm no longer on that highway. So like that jump. It's almost like, like the, like, like the tears that come from it because I experienced something similar. Like the tears that come from it are like, I'm no longer with you on this path. Like that makes. That breaks my heart.
• 5:56
  Speaker B: Yeah. Good friends about the kids.
• 5:59
  Speaker A: It's literally about like I'm no longer going to experience life the same way with you.
• 6:04
  Speaker B: Yeah.
• 6:04
  Speaker A: It's wild. It's.
• 6:06
  Speaker B: And it's been difficult. Sorry, I may cry.
• 6:08
  Speaker A: No, I know. I. I am too.
• 6:11
  Speaker B: So we have, you know, those friends specifically. Yeah. They've been so wonderful and they understand. I mean I've had Babe have behaviors over at their house where like he bit somebody and it's like everybody was so understanding. A lot of people don't have that.
• 6:27
  Speaker A: Yeah.
• 6:28
  Speaker B: You know, so I, I don't think I realized how much it was going to be different. Like you're talking about trajectory until I was in it for a little while, you know, and I knew he'd be. He was different but not less. And everything that we knew, like treated him like that. Like very, you know, he's just a little different. You know, he still plays and things like that, but so I'm very blessed for that. But yeah, I don't think I realized how different it would be until like he got a little bit older and like things started happening and his behaviors started happening. It's tough. You know. Also it's very different when you have a behavioral kid even from other like autism. Like you know, moms having a girl,
• 7:16
  Speaker A: like listen, having a girl, my Milly you know, a daughter with the same profound non speaking autism. She does not have behaviors like my son does. Like there's just not. It's. And, and so even that there's difference. There's a difference. Like I, like I will tell you, I mean, this is no harm, no foul to any of my children. But Mac is a tougher child. Like, he is a. And his sister with the same diagnosis can generally be cared for with a more typical caregiver than he can. And that severity, like, that matters. That, that difference matters because it's safety, it's, it's health, it's, it's, you know. Yeah. Like there's something deeply physical, much more physical about it. And you know, when, when you are tasked to raise and be the mother of that, knowing the difference. I mean, screw typical. Like, there's actually, there's actually differences even in between severe behavioral and self injurious behavior. Autism as well.
• 8:17
  Speaker B: Well, yeah, a hundred percent. And you know, I'm so happy that I have a, you know, great group of autism moms that like understand it. But like I was saying, like, even within that they all have their little things that are different that like, I don't understand that, you know, their kid does something. That's why I always say you've, when you've met one autistic person, you've met one autistic child. Yep. It's not. There could have similarities, things like that, but even the behaviors are how they're aggressive or little things that they do. It's not the same in every other kid. So it is, there is differences. And you know, I do have another child. I have a two and a half year old and she is on the trajectory to be typical. So it's very different parenting I'm going through now. As you know, she grows older and toddler years, it's like cool to see certain things that I didn't get to see with Gabe. But it's also like heartbreaking too, you know, but she's already like recognizing that he's, he's different and he, you know, it can be challenging because if he gets upset, she screams because she's like, oh, he's being loud, you know, and she's hit us before because he's. Exactly.
• 9:37
  Speaker A: Yeah, she's.
• 9:38
  Speaker B: Yeah. And it sucks because you want to take. Discipline her in a certain way that you maybe can't discipline him in the same way. And it's, she probably inside her head thinks, well, it's okay if he does it, you know, why can't I?
• 9:56
  Speaker A: So think about that. I mean, the, the, the beautiful complexity in raising a typical daughter and then having my, you know, severely autistic children is that I get to do both. I always laugh at I'm like. I'm literally sitting on two plants of parents, of planets, of parenthood. And I love both of them, but. And it's beautiful to have the complexity and, like, the nuance. But having a typically developing child alongside children with profound autism creates a. I wish I could clone myself because I. Because the capacity. To your point, like, you're. You're churning through things from a motherhood point of view that the majority of mothers don't even think about. They're not even conscious to it that you're going to. I have to parent her in a way that is right for her to. And you get to understand this, that. That a typically developing child will respond to. Right. She will respond to discipline. She will respond to. To boundaries in a way that, you know, Gabriel, Milly and Mac do not respond to. And so that complexity that lies in it is really heavy. Sometimes. It can be beautiful. I mean, I always think, like, what did it add to my life? I probably see things. I have a lot more capacity to see the gray in a lot more situations probably than I used to. Would you say that that's true about you, too?
• 11:09
  Speaker B: That's definitely true with my husband, for sure. My husband is very black or black and white. He wants an answer for everything. Why is this happening? Why is this. Okay, what exactly can we do? Is this gonna solve this? He's a very, like, soft. I've always been sort of a person who can see gray, who can see both sides. So in that aspect, it hasn't changed certain perspectives like that. But now with the parenting, it is. It's more difficult, I think, with the parenting now with the typical child, because she's also younger. So it's like she hasn't. She's growing up seeing this. That's right. She's also. So it's like, hopefully once she gets a little bit older, like 4 or 5, we can explain it in a way that she becomes more, like, empathetic, and you know that it changes her in that way.
• 12:10
  Speaker A: You sound like you have such an incredible support system. I want to go back to that. With, like, the friend group and your family. How would you coach another mom or parent that has maybe doesn't have that and is seeking to ask for more help from people that do really, truly love their families and their kiddos? Is there a way that you've realized that really helps to resonate and make those in your circle maybe provide more organic help when you need it? Is. Is there anything that you can share about that?
• 12:39
  Speaker B: See, it's. It's hard because as supportive as everybody in my life is, I wouldn't like to help with Gabe. I wouldn't ask anybody to just because of the complexity of his. Some of his behaviors.
• 12:57
  Speaker A: How about when you were saying you were sharing, you know, as. As he received a diagnosis. And there are times where, you know, you are in those settings where he is behavioral and you have this loving sort of, you know, net of support that's right there. Do you think that that came from being open about the difficulties? Do you know that they. That they. When they are around you, they're able to, like, sort of love and protect and hold you because you are so open about what those struggles are?
• 13:22
  Speaker B: Probably.
• 13:23
  Speaker A: Yeah.
• 13:24
  Speaker B: Yeah. And I have people in my life that, like, genuinely, like, want to know as well, and they, like, preface everything. Like, even some of Manny's friends, they'll talk to me when we're at, you know, at a party or whatever, get together. They're like, you know, I'm just going to say this. You guys deal with so much.
• 13:46
  Speaker A: Yeah.
• 13:46
  Speaker B: Are so strong, you know, however, that I don't, you know, they always preface it by saying that, and it's like, that's great. And they ask me questions, you know, like to really deep dive into it and stuff. And just a lot of people, I guess, just don't have that. As much as it's great. It's also like, you really don't understand. Yeah.
• 14:09
  Speaker A: Yeah.
• 14:10
  Speaker B: You want to. It's like, I really can't teach because it's like, I'm not going to have you come over and watch him when we go out or whatever. Because I wouldn't want to do that to you because you don't understand.
• 14:22
  Speaker A: The burden is so heavy sometimes.
• 14:24
  Speaker B: Yeah. And it's like, I would. I don't want to put that on the other people.
• 14:27
  Speaker A: Yeah. What about the mom that just received a diagnosis? You know, after you've experienced this and, you know, have lived so beautifully in directing Gabriel through, you know, years now, what. What do you tell the moms? Or have you had moms come to you and say, what do I do?
• 14:45
  Speaker B: Yeah. I mean, you know, and I'm part of, like, a bunch of Facebook groups and stuff like that. And I'm always, you know, this. I really, really, honestly have tried to be the positive, like, bright light for moms and stuff like that. The close people in my life. I'm like, this is shit. But, yes. When I first meet.
• 15:09
  Speaker A: Yeah.
• 15:09
  Speaker B: You don't want them to feel like it's a death sentence. It's not a death sentence. It's just different. Make your. Make your brain just tell yourself, like, this is just a different.
• 15:22
  Speaker A: Not wrong. It's just different.
• 15:24
  Speaker B: And you will have to do things that you probably never thought you would do or bend in certain ways that you never thought you would bend. And in a way, it helps you see the beauty in certain things, and it can make you positive if you let yourself. You know, I just said it's a Selma lunch ate at a elementary school in town. And I said it to one of the kids that I see her outside the classroom as well. And I said, you know, this day and age, all the kids are, like, obsessed with screens and, you know, how they do things and their socialization is just different than when we were growing up. And I said, that's one thing I'm happy with. My son gets to stay a child longer.
• 16:11
  Speaker A: Yeah.
• 16:11
  Speaker B: And I say that to a lot of people, and they're like, I never thought about it like that. If you can change, that's such a beautiful perspective. Yeah.
• 16:22
  Speaker A: Yeah. Because, you know, there's. There's a. There's a childhood wonderment. Yes. Because they develop a slower and on a much different timeline that you do get to see them as children for a longer period of time.
• 16:36
  Speaker B: Yeah, for sure. And, you know, and you, if you can, you know, you're outside with them or whatever. They like being outside. Sometimes my son will, when it's windy, just, like, look up at us and like, yes, the leaves move.
• 16:49
  Speaker A: Yeah. Yeah.
• 16:50
  Speaker B: I'm like, it's so beautiful to see him see things that we just take for granted.
• 16:55
  Speaker A: We just walk.
• 16:56
  Speaker B: What is he thinking?
• 16:57
  Speaker A: They force a pause. I love that so much, Alyssa, because Milly really just discovered that there's a moon. Like, she's, you know, 11 years old. She, like, discovered the moon. It was like something clicked, you know, six months ago. And she looked up and I was like, sweet. Yeah, that's the moon. It's all the way up there. And on her device, she's like, moon, stars, moon. And I'm like, I know. And, like, she does this, like, head twitch thing where she's, like, looking up at it and, like, trying to get at different angles. And it forced me to go, gosh, you're right. Like, that is powerful just to stand in awe of, like, the moon and the stars.
• 17:32
  Speaker B: Yeah. And it makes you, as the parent, take a little bit of joy into something that they see differently. Like, they truly. Just different. They think differently. And that is okay. You know, as much as you want things to be different. And like, I would love for Gabe to talk one day.
• 17:52
  Speaker A: Yeah.
• 17:52
  Speaker B: I've come to terms and I think you sort of. This is, you know, an opinion that I would, you know, give. Somebody is put all the expectations away, pray for the best, hope for the best, you know, work through the worst of it and just say, if it doesn't happen, it doesn't happen. Because you have to adjust your expectations. Because then you're like. Like I really. You know, and then you. You get in a ditch and a rut and you feel like it'll drive you crazy.
• 18:28
  Speaker A: Just.
• 18:28
  Speaker B: You have to let go of expectations in a way.
• 18:31
  Speaker A: Yeah.
• 18:32
  Speaker B: As much as you want them to strive to. To talk or whatever the case is, you have to sort of let go of your own expectations because it'll.
• 18:40
  Speaker A: Cause you can want those things. You know, I always say you haven't have these desires. I can. I can have. I have a lot of desires. I have a lot of desire for my typical developing child.
• 18:47
  Speaker B: Right.
• 18:48
  Speaker A: At the end of the day, their life is not based on what my expectations of them are. Their life is based on what is going to happen to them, who's going to come in out of their life to form and help guide them to become the best version of who they're meant to be. And I think you're so spot on with that, Alyssa, that if we can. If we can harness the release of expectations and you actually will find more joy in the process of something that's really difficult and really hard, but then you don't get stuck in sort of. What's the phrase that a friend of mine was using recently? Like, hit the tar, baby. Like, if you. If you constantly are punching what you know is not going to happen right now, you get stuck. You get stuck and you just keep pulling, and then you get dragged down. And the more that you can just let go of what expectations you might have had, you might be able to see those inch tones of development, those beautiful byproducts of the work that you are doing and how you are guiding them. And it'll. It'll become the joy on the journey.
• 19:44
  Speaker B: Yeah. And there is joy in it. I do have to say there is joy. It's not all terror and bad. Of course you're always gonna have this, like, weight on yourself, you know, just being a parent in general. And then it's sort of like amplified when you have a kid with found autism. But just try and find the joy as much as you can, because it'll just terrorize you if you Don't.
• 20:10
  Speaker A: Yeah. You know, if people were to listen and take away one thing from you and from this conversation and remember one thing, what would it be?
• 20:19
  Speaker B: Again, just try and find something positive out of what your. Your child is. Is going through. You know, it's hard when you're in the trenches and like, we were just going through it, you know, for a couple weeks, really increase in aggressive behaviors and things like that. And it's like you. It is survival, but once you start to. To get out of that or you see your kid doing something joyful or looking at the leaves and you can think, really try and let yourself think. I wonder what they're, you know, they're thinking and just try and be positive in that moment.
• 20:59
  Speaker A: Yeah. I think it's so powerful, and it's. It's. I think, the reason why we get to parent children like ours. I think that it's one of the most beautiful byproducts while it is grown in the. In the depths of some really, really hard, hard and tough realizations. The ability to reorient and harness and find the joy and the good will never be the wrong, ever be the wrong choice. Alyssa, thank you so much for sharing your story today. I know that it's going to so many, and when we hear and stand witness and testify and share about what that day to day in and day out looks like, I don't think it ever goes wasted upon the ears of other mothers going through something similar. So thank you for being so open and sharing today.
• 21:45
  Speaker B: Of course it's hard, but they're. They're still your children, you know, and you love them like you would any of your kids.
• 21:52
  Speaker A: That's right. That's right. Well, thank you again for your time. And everyone, thank you for listening here to Alyssa's beautiful testimony here on the Inchstones podcast. Until next time, bye.