Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / Growing Up with Autism: A Sibling’s Perspective on Inchstones and Empathy

Transcript

Growing Up with Autism: A Sibling’s Perspective on Inchstones and Empathy · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:01
  Speaker A: Hi, everyone. Welcome back to another episode of the Inch Zones podcast. I always say I'm so lucky to have leaned into the advocacy role, and the people that come into my world because of that have become some of the most genuinely authentic people in my village. And this one really does take the cake for me. Lori Dove is here with her daughter Lila. And Lori and I met through the Mom Network of Autism Speaks and, and all the advocacy work. Lori has built a platform on Instagram called Everyday Autism Essentials. Sharing the Everyday Pangs, products, life perspective, anything that comes along with this role of an autism parent that most of us did not think would be on our bingo card. As I say, and Lila is here today, and she is the older sibling of Liberty and Luke. Two of her siblings have autism. And I think one of the threads of conversation I always like to include is that this, this life that we get to lead not only impacts the parents and the siblings that have autism, but the siblings that do not have autism. So, Lila, thank you for being here today. And if you could start by just sharing what is one word that comes to mind when you think of being the older sister of autistic siblings?
• 1:22
  Speaker B: I think two words that come to mind are learning experience for me. Like, if I talk to any of my friends who have. None of my friends have like, siblings with autism, none of them would say, like, yes, they learn things from their siblings, but in a very different way. I think you learn more about not just them and what it means to have autism, but about yourself and like, how you react to different things and like, how unpredictable it can be.
• 1:47
  Speaker A: Unpredictable. That's one of the buzzwords in this life with, with autism, right? Because when you can't predict and you are a child growing up craving predictability, how did you take that and really have it? Like you said, learn to understand yourself. What did that give you?
• 2:07
  Speaker B: I think it definitely gave me a huge sense of, like, independence and from a very early age, like most people, my brother and I are only 18 months apart and usually that would like, group them in together with like, everything that siblings that, that close do. But I think early on I realized that the way that he went about things wasn't the way I wanted to go about things always. Not even in a bad way. Just like, I like to be on my own fast paced path and sometimes that wasn't the best for him. So I think early on I moved solo because I like, because I noticed.
• 2:41
  Speaker A: The chasm with my children, right? They're all two and a half years apart and that, like, you said, that 18 months for you and your brother, for Morgan and her sister Millie, that it's two and a half years, but it's growing greater. You know, in some ways, the outside world sees it and they go, gosh, are Millie and Mac twins? And I think, no, they're all, you know, it's like three kids in five years. As the sibling, do you feel like, that gap, did you notice it growing up or did you find that it was like, the independence that was growing?
• 3:12
  Speaker B: I think, yes, Maybe a few years ago I would have said I felt it more. Like, I felt he was, like, growing up slower, like, maybe I was maturing faster. I think as we've gotten older, now that we're both in high school, I see it less because he's starting to do the same thing that maybe I would have done. Like, he's going to turn 16, get his permit. Like, that's something I did. So I think I've seen it less, maybe more middle school. I felt that way because I just felt like I was mature for a middle schooler. Maybe he wasn't. But now I think. I think I see it less now that we're older.
• 3:44
  Speaker A: I was chatting with a mental health professional that was saying that, you know, middle school is quintessentially one of the hardest chapters of a child's life in general. And I have such a deep sensitivity and protective nature. Even hearing you talk about that, because that was probably one of the harder times. When did it. Do you feel like it was when you were becoming a young woman and, you know, having more freedom within the perimeters of your own home with your mom and dad?
• 4:11
  Speaker B: I think when I went to high school and he was still in middle school, I think I just, like, matured a little bit more, understood a little bit more than, like, I. I felt older. So I was like, I, like, I should feel, like, more mature and older than him now, because I think when we were both in middle school, I would, like, wish that he would be on my level of maturity. But then I started to understand, like, he is younger than me, and obviously he does. There are reasons why he is less.
• 4:42
  Speaker A: You shared before we press record, that you wrote your college essays and entrances on this experience. Talk to us about that, because I think that that's profound.
• 4:52
  Speaker B: So my essay starts off me in my brother's speech therapy room, which I've been going to for a long time, and it tells a story of how there were different, like, cards on the table of, like, giraffes, apples, and how my brother's speech therapist asked him to. Asked him to read the card, but he couldn't. And it was me maybe at a. At a younger age, not understanding why he couldn't read it and wishing that I could just blurt it out for him. And then it goes into how. Growing up, I realized that just because someone might not communicate as much with words doesn't mean that they're not communicating and haven't helped me in any kind of relationship, not just with someone with autism, just in general. That sometimes the strongest communication isn't just through words.
• 5:36
  Speaker A: I mean, that gives me chills because I think, again, we live in a world, in a global community, right? A global village. Like, we have access. We can find out what's happening in the Congo right now. Like, literally. We could literally find out. And I'm sure you'd actually do it faster than your mom and I would be able to, but we could do it. Right? And I think what we forget is that the. The world wants to learn, but you can't learn it unless you are fully immersed in it. Right? You know, nonverbal communication. What other teenager in their family is realizing that they're picking up on nonverbal c. And sensory sensitivities that they know, whether it's the bright light or, you know, the. The outside landscapers that are working. Like, there's very few other teenagers that you can. That can share that with you. How do you feel like your closest friends that don't grow up in households like yours honored even your learning of that? Do you feel like your closest of friends. You know, Layla has a. Has a life that's so different, yet she's gained something from this that I can't pinpoint.
• 6:34
  Speaker B: I think yes. And also, no, I don't think they look at it as, like, that I have something different. Like, they're around my siblings all the time. Like, it's like, not something new. Or that they're. Like, they walk around. Like, they. They notice, like, obviously that it's a little different, but I don't think they. They know that I'm not. Yes, I am affected by it, but not any negative way that they would be. Like, I feel so bad. Like, right. Feel like they need to walk on eggshells when talking about things like that. Like, that's not really the, like, connotation around it. It's more of just like a. She knows how to talk to them. Like, we can. That's fine.
• 7:16
  Speaker A: Did you ever feel the pressure in your home to be the Easy one, I think, yes.
• 7:22
  Speaker B: But, like, naturally, like, I don't think I tried to do it, but I think it did happen naturally. Yes.
• 7:28
  Speaker A: Right. You know, I always say oldest child, girl, like, we have these innate desires to lead, lean into the emotions of it, and also just process it. Did you have moments growing up where you thought, I'm going to stay quiet on this because mom and dad have so much else on their plate? What were the best things that they did and what were some things that, looking back, you thought I should have been more expressive to this need of mine even within the swirl of the family?
• 7:56
  Speaker B: I think the best thing that I've been told since I can remember and I'm still told to this day, is that, like, when I would be like, oh, you give Luke so much more attention than me. Like, why? And I think, like, I knew, but, like, my mom would always be like, because you don't need as much attention.
• 8:11
  Speaker A: I'm sure your mom and I feel this. I wish I had endless amounts of energy to mother my children as a. You know, just that one child at the same time. We have more than one child. Where have you maybe felt those mama bear tendencies for your siblings? Maybe when you're traveling outside the walls of your house, do you ever felt more protective of them?
• 8:30
  Speaker B: I think more with my sister because I think it would just be normal even if there was no, like, autism involved. Like, I'm 11 years older than her. I definitely, like. I mean, obviously we don't have, like, that normal, like, sister. Like, oh, you can't take my clothes. Like, she's literally 10 years younger than me. But, yeah, I do. Like, especially I think, in public when I know she. Like, we were at the pool the other day. Like, I know. I don't know if she's just gonna go run in the pool. And so I, like, feel the need to, like, chase after her when, like, usually, like, I would, like, maybe if someone else had a sibling like that, they would be like, oh, they're not gonna go in the pool. Like, yeah, she's gonna go in the pool, so I'm gonna go chase after.
• 9:12
  Speaker A: Well, y. Again, there's parts of your experience that your mom and I as mothers will never understand. I think honoring that because you're having to have these extra senses from a younger age. And it's not like you said, it's not wrong. It's just that it's so different than what maybe your best friend is experiencing. I know my oldest would do the same. Like, if we get to the Pool. And, like, I'm putting the life vest on. Mac. Morgan knows even though Millie can swim, she knows there's no just setting up her towel. Right. There's no immediately going to the ice cream stand to get. To order the member number and get your. You know, her. What she wants. It's more of a. It's more of the hypersensitivity to where your eyes go and to where, you know, you're. You are in control of your body. So you get to help control the spontaneous, you know, honestly, you know, dyspraxia, apraxia, you know, traits of your siblings. What have. You know. Can you give me an example of what a typical thing that. That. That Liberty might do as a sister that does surprise you? Because I. I notice those things happen in my house as well.
• 10:15
  Speaker B: Like, she definitely. She can. She can get very, like, upset quickly. Something that, like, I think we're all just used to. But, like, I think the thing that used to annoy me the most. Not even annoy, just, like, it would always happen. I would be, like, when I had my permit, I would just drive, like, my mom, her and me in the car. And, like, I wasn't really great at driving yet. Like, I was just trying to figure it out, but I would, like, plug in my music and just, like, play it low, like, while I was driving. If, like, a song. If I didn't know all the words, if she didn't know all the words, if it turned off too quick, if I got a text, like, immediate, immediate tantrum.
• 10:52
  Speaker A: Right.
• 10:53
  Speaker B: That's hard to. Because I would always be like, oh, I need to, like, deal with. Like, I need to, like, tell her to figure it out. But, like, I was driving.
• 11:01
  Speaker A: You're driving? Yeah. Like, you were in charge of this.
• 11:04
  Speaker B: Yeah. So I would always be like, she can't do this while I'm driving. Like, what am I gonna do?
• 11:10
  Speaker A: I know that happened. That happened recently. I was, like, you know, carpooling in my big old suburban. And. And Millie was, like, so. So, like, insistent on, like, the song changing. And, you know, it was actually interesting. One of my oldest daughter's friends said, millie, you have to wait. And then the moment passed. Right. But when. When others start to notice the things that provide safety to siblings like yours. Right. And it's also knowing that, like, being able to lean on your village of support and especially, as you said, like, your friends have grown up knowing your siblings. I hope that makes you feel good and that, you know, you've lived authentically as their big sister.
• 11:51
  Speaker C: Sure. I mean, I think, you know, for me, when I hear Lila talk about it, which isn't often, right. She, you know, she kind of is a low profile and you know, I would say doesn't, you know, grandstand about, you know, what's happening. She just, she is and moves through all of the what's going on at home and, but having a, our second diagnosed and that 11 year difference, I feel like has been very healing not only for Lilith and I relationship because I think it gave her a second glimpse of, okay, so this is why you gave him more time and attention that didn't come. So it, it's really allowed for her and I to not bond together, but heal together. That's what I find, I think most fascinating about the second time around of just how healing it is. And I mean, it's not that nobody would wish this upon, right. Like when we knew we were having a third, we knew the statistics, we knew that the odds and then we knew it was a girl. And then you think, oh, okay, the odds are a little less. And then, you know, you know, but, but when it happened and then when she got diagnosed, I don't think anybody was surprised. But that's, that's been a nice, beautiful byproduct.
• 13:04
  Speaker A: I mean, listen, like there's very few teenagers are shaking their heads in agreement with their moms and I just saw you in agreement. All I'm thinking is like, gosh, what a beautiful, beautiful, beautiful byproduct of a very, very unchosen hard situation. And I think you're right. Like even at 11, you were able to see that differently. Right. And, and, and to ask the questions. Curiosity is one of my favorite words because I think that the more we and teach curiosity to our children, basically you are able to acknowledge my mom was, was having to spend more time when I was younger. Like you said, Lori, have, have the empathy for each other. I mean, dare I say most mothers and daughters in typical family wish they could have people desire to, to purchase the kind of relationships that only come from a depth of a pain or a hard situation and then having the ability to rise up from it. Right. And you can't purchase that kind of vulnerability and curiosity, especially within a mother daughter relationship, unless you have gone through something together. So, you know, there's, there's no medal that's gonna be handed out, there's no trophy. But at the same time, as you go through life, I think like you said, Lori, that moment of being able to heal through that with each other has got to Be incredibly special.
• 14:19
  Speaker C: Yeah, for sure.
• 14:22
  Speaker A: What does a, what does a typical weekend look like for your family?
• 14:26
  Speaker B: The weekends are definitely hectic in the house, but especially during the school year when there's nothing really going on for definitely Liberty. Sometimes Luke, I think as now we're both in high school, Luke and I, he's out on the weekends with his friends, I'm out on the weekends with my friends. But I think that time, I mean, when I like, would check the family group chat, say, like, if I'm out with my friends, whatever, it's always like mom, dad and Liberty. And I think like the weekends are like her time to get 100 attention. Because during the week, like, I, I played sports, like, mom would have to drive me. Like, she would just be sitting in the car loop out doing whatever. Like, we would need rides, we would need, like, attention on the weekdays after school, like, as normal teenagers do. But on the weekends, that's the time where we do our own thing. And she gets like the reset of like, activities, full attention, whatever she want. Like, not whatever she wants, but, like things that are good for her without the distraction of her older siblings.
• 15:28
  Speaker A: True, it's all, listen, it's a circus. Whatever family you're in. What would be one thing you'd want? Sibling? Say a, say a, say a sibling that is 10 or 11 and their younger sibling is 2, 3, 4 and gets a diagnosis. What was one thing that you can say that your mom and I could not say to that sibling?
• 15:48
  Speaker B: I think just try your best to be empathetic and not be so hard on your siblings because you see everyone around you like, yelling at their little siblings because they did something wrong, whatever. And you think that's like, normal to do too, because, like, it's just how everyone acts, like on TV and in real life. But that's not like that. You're not going to get anything out of trying to discipline them or yell at them for doing something or acting a certain way. Like, you're just not gonna get anything out of that. So just try your best to be understanding and maybe if you don't, like, walk away from the situation, but just try to go into it with as much like, empathy as you could.
• 16:28
  Speaker A: Because, you know, I speak at, you know, friends all the time talking about neurodiversity and the curiosity that Gen Z has to the differences of others, I think is another beautiful part of the global village. And having TikTok and having social media, you know, gets such a bad rep, right From a macro level of like, distracting and it's changing our central nervous system and it's fritzing us all over. I think that the beautiful byproduct is that like you can show and learn about empathy because of how much people share their lives. Do you feel? I always feel like, you know, the neighborhood people of older generations, like, you know, your grandparents and my parents, they have all these like, oh, back in my day that didn't exist or back in my day this didn't happen. Well, back in their day, they didn't understand because they didn't get to see what other families of autistic were. Do you see that? That part of you will become your superpower as you, as you get older.
• 17:27
  Speaker C: Superpower. I will speak. She can walk into a room and I'm telling you, she is well aware of the emotional intelligence of almost everyone so quickly, but most especially the one that's off in the corner by themselves. I mean, her EQ is off the corner.
• 17:45
  Speaker A: Yeah. Your emotional intelligence is so far, far beyond your years and will become the thing that people crave. They're like, oh my God. But Lila told me that before, you know, I'm sure, I'm sure, sure, sure you had this, like, actually, I would bet my bottom dollar that someone in Liberty's world, especially Liberty, with, you know, being. You see now. Oh my gosh, you'd be a great, you know, behaviorist one day. Oh my gosh, you'd be such a great therapist one day. Your spidey sense to that is because of who your siblings are and becomes like you said, Lori, like this amazing skill that like you cannot teach. You have got to live it. So, you know, do you think when you think down the road, like what you would ideally like to do or live well, what does that look like and does it take into account those skills?
• 18:29
  Speaker B: Yeah, actually. So I have to apply to college in a few months and I'm taking a psychology class next year. And I'm like, like been thinking about maybe like going to speech therapy. Because it's like literally I have experience with it every single day.
• 18:46
  Speaker A: Yeah, like you would, you would be so hyper aware of those tiny little things.
• 18:52
  Speaker B: Yeah.
• 18:53
  Speaker A: That only a mother, sister or a.
• 18:55
  Speaker B: Sibling can know so much. I have to learn to do that. Like, I already know and like, of course there's so much that I do have to learn.
• 19:01
  Speaker A: I'm sure your mom is so proud of this. That will become. And through your studies, you're gonna end up becoming a greater resource to those families who are first time in this world and they're starting speech therapy or they're starting whatever. Whatever it is that you decide to go into because of your confidence in saying, yeah, I lived this. I saw that. I noticed this about, you know, your child. And it's. And I can't fix it 100%, but I can absolutely pinpoint that in a different angle.
• 19:30
  Speaker C: Yeah. And while we haven't experienced, you know, non speaking autism, you know, like your family, the two. I mean, what Luke and Lila and Liberty have are so different. Totally no language. Right. It's why I can remember his first word was snake. And I feel terrible because Lila will always say, well, what was my first word? And I'd be like, you came out in a full sentence.
• 19:51
  Speaker A: We're literally like, hey, mom, what's going on?
• 19:53
  Speaker C: Can I get some cream cheese on my bagel, please? Like, it wasn't so, like, yeah. So I always felt terrible about not.
• 19:59
  Speaker B: Remembering what it was.
• 20:02
  Speaker C: We can joke about it now because.
• 20:04
  Speaker B: You can have the lever.
• 20:05
  Speaker C: You can cut it right when he. You have no language for so long. And then finally that word, I mean, we were all waiting for it because we didn't know if it was going to even come.
• 20:15
  Speaker A: Yeah.
• 20:17
  Speaker C: Then to have Liberty, who was doing the complete opposite and would tell you that the illustrator of every book and, you know, she didn't know those words, and she was, you know, was, you know, completely memorizing and scripting through all of her conversations, literally, you know, while there's still lots to learn, I think even having the juxtaposition between the two is fascinating because it's so different.
• 20:44
  Speaker A: Exactly. Thank you for being so honest about it. Thank you for, you know, being willing to share. I think that there are not nearly enough young women in your position that are sharing so vulnerably. And I know that that is also a reflection of you, Lori, as well. You know, we do condition and model to our children what is the acceptable and beautiful way of living. So I thank you both for being. Being as open and vulnerable and sharing about your story as you have been. And I will be the first to sign up my children and grandchildren for your speech. Is there anything else you'd like to leave the listeners with before we go?
• 21:20
  Speaker C: No, just thanks and everything that you do. Sarah, you are the reason that I do what I'm doing now the second time around. And I never thought that I would be in a position to be talking about things so openly and so vulnerably. And I really appreciate everything that you do.
• 21:34
  Speaker B: And you're.
• 21:36
  Speaker C: You're. You're amazing.
• 21:37
  Speaker A: I'm letting this out. Lori. This is not going on the podcast.
• 21:41
  Speaker B: No, I.
• 21:41
  Speaker A: No, but listen, I really do believe it. The most primal sense that, like, women helping women, when you say it out loud, you're like, of course. But when it actually happens and you actually get to see it and, like, the dynamic of it and how it, like, it is the infinity symbol, the more you give, the more that you receive. It is. It's such a joy. It's such a joy. So thank you for that. I will be absolutely putting all of your details about where they can find you on everyday autism essentials on Instagram and follow over your family story. Thank you guys, so very much. And until next time on the Influence Podcast.