Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / What Fiction Can Teach Us About Special Needs Parenting | Jacqueline Friedland, Author of Breathing Underwater

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What Fiction Can Teach Us About Special Needs Parenting | Jacqueline Friedland, Author of Breathing Underwater · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey everyone. Welcome back to the Insurance podcast. You know that I believe so deeply in that the smallest of moments carry the greatest of meaning. And today we're stepping into something a little different. I have had the privilege of sharing so many of your stories through over 120 plus episodes now on Real Families and clinicians and therapists. But sometimes, and in the vein of what this episode is gonna be about, sometimes even fiction has a very unique ability to tell the truth and about this life that we're leading. And today my guest is Jackie Friedland. She's the author of a book that came out today, literally today, August 4th. And it's actually a novel about a mother who, in raising her teenage autistic son, Leo, navigating her career, middle aged life with her own mother's diagnoses and realizing that the unexpected relationships that come into our life allowed her to best understand herself. And I just think this conversation is going to be a reminder to me and to all of us that the best, best, best stories are not here to entertain. They're to reveal and to increase our capacity for empathy. So, Jackie, thank you for being here today on Inchtense.
• 1:17
  Speaker B: Thank you so much for having me, Sarah. I'm thrilled to be here and to talk about the book.
• 1:22
  Speaker A: Awesome. Well, so this is what I first asked when I was approached to have you on the show is why did you choose fiction for this story?
• 1:31
  Speaker B: So I am, I was, I'm a lawyer by training and it was, it was never my passion. I've always loved the written word and stories. And when I was working as a lawyer, I felt very much like I was, I went very corporate and I felt like I was representing companies that were fighting over money and I was not making any sort of positive difference in the world. And I was raised by a mother who was a professor of special ed, who every day she went off to work and she was doing something that mattered. And so I always thought I would have a career that mattered. And when I decided that I just missed literature and writing so much, I felt like I could use stories as a way to you know, make even just if, even if it was very small, positive change in the world and to spread empathy and to open people's eyes about different issues. And so that's why I went into fiction to begin with. And then for breathing underwater, I stumbled on some true statistics that led me to create a whole story which we can dive into, no pun intended, or, or save that for later in the conversation.
• 2:43
  Speaker A: Yeah. You know, I think as someone who Is I've shared my journey since the very, very beginning. And it was even the hardest of points of, like the severity of both my children's diagnoses and the, you know, level three deeply apraxic whole body, apraxia, non speakers. And what I've come to realize as I've shared over the last number of years is that the stories of teenagers and young adults and the sort of matriculation, from what I know, another autism mom, Jess, plus the mess always says is that when they outgrow cute, it becomes a different story. And I really wanted to know why you, I guess, chose maybe not consciously or not, that, you know, Leo is, is, is a teenager. And those stories are not as easy to swallow for people that don't live this life.
• 3:28
  Speaker B: So I think that teenagers in general, across, you know, the entire universe of American teenagers live a difficult life, different than what we grew up with. And there is so much required of them just, you know, to, to, to succeed in school and socially. And then you add onto that various challenges and it's just that much more difficult. And you know, they say as a writer, you're supposed to write what you know. And so writing from the perspective of a mother. I have four children myself, and I feel like parenting is something I really do know about. My kids are the oldest is about to be 22 and the youngest is 15. So they're all sort of in that teen phase right now. And I think that one of the hardest parts for me as a parent is working, learning to let go and trying to give my kids the independence that they need while also remaining a good support system or structure you want to call it for them. And I believe that for kids on the spectrum, it's so challenging to know how much support do they need? Am I giving them the, the right infrastructure to just to. Or am I believing in them enough or not enough? And should I let them stand on their own two feet or should I be here to catch them? And I also. So as I mentioned, my mom was a professor of special ed, and one of the things she used to talk about a lot is how all of the supports after high school kind of like fall off a cliff, like what's available. And so I think like, off the
• 5:03
  Speaker A: cliff is something that I, you know, we hear so often.
• 5:06
  Speaker B: So I think it's. It's really important to think about kids at this stage and what comes next and how are they going to live as independent adults? Is that in their future and what should be their goals and all of These things, I think, was interesting to me, and I wanted to sort of have other people think about it too.
• 5:26
  Speaker A: Yeah. You know, the word that I just heard and it just piqued my interest, like that scaffolding of what kind of support needs. I don't think that there's a single person that's going to listen to this that would not agree that we don't have a hundred percent certainty in what that support. Is it too much? Is it too little? Is it enabling their need of more support? Because I constantly provide it. What is that balance? And I think it almost hits at the root of the entire nation's autism conversation, is that there's never going to be a certain answer for your family, for my family, for another family, because of the way autism presents. And it almost is begging us to sit in that uncertainty. Right, right.
• 6:07
  Speaker B: And I think also one of the things that was challenging about writing this book is that so the character with autism is Leo. Leo is just one kid, you know, and he has his. His challenges and his joys and all of those things, but there's no way to sort of present the universal autistic kid. Like everybody is different. And so. But yeah, so without having that, like, sort of, without there being a one type of child, it's impossible to have a one solution to know. And I think it's just a lot of trial and error.
• 6:40
  Speaker A: And I think hearing it said through different humans voices, like the way in which you just said that, you know, it can be said in a thousand different ways. And I think by hearing it more and more and more, just like anything, you know, repetition helps. And I think I sat in a panel recently and I had this mother ask. She looked at me, you could tell, like she wanted me to give her the answer. To say this was gonna be so damn certain for her. And I just said to her, I don't know what exactly is coming into your world that is making you feel like this is the next right thing, but I can see in your eyes that it is. So just trust that.
• 7:15
  Speaker B: Trust that. Absolutely. Absolutely. So in breathing underwater, there's two main characters. There's Leo, who's this, you know, teenager, 16 year old with autism. And there's McKenna, who's a Division 1 college athlete who looks like she should just be, you know, on top of the world. And she's the one who, like her world, like her life is just falling apart. And it's her relationship with Leo that ultimately is the thing that kind of saves her. Yes, but what is the difference between them is that McKenna has nobody. Her, her single mother passed away. She, she's raised by her grandmother who sort of as the book is opening up, it turns out she's. McKenna realizes the grandmother has dementia and or is beginning to have dementia and she has no support system. She has nobody unconditionally behind her. And Leo is the opposite. And this is another thing my mother always used to say that the one thing that she did see, the one uniform thing from kid to adult to everybody, is that the success stories that she found it was there was always a person behind that child who was unconditionally there doing their very best to support them. And not that they always got it right, but that they were there and they were trying right.
• 8:31
  Speaker A: And that, you know, throughout the novel that's what I think. You, you answer, you answer through the naturally, you know, evolving storyline like what does it really mean to support and save someone? Because we have so much peaked curiosity just as humans to know and want to know people's life stories and how they got to where they got to be. And I think that science has shown and I'm a ravenous and devour motivational speakers and things like that. They really say that you do only need one person deeply believing in you. And I think that you did a great job sort of allowing that to be a common thread in this for even the typical young woman of McKenna.
• 9:17
  Speaker B: Thank you. You know, the whole. The inspiration from, for this book actually came from I was. I just stumbled on a statistic that over 40% of Americans don't know how to swim. And as someone who grew up around water and was on a swim team, like I, that was just. I didn't know that and I was sort of horrified. Cause it's like a survival skill and people should have the opportunity to learn, et cetera. And I was just kind of researching it and then I came on to the fact that kids on the spectrum are 160 times as likely as neurotypical kids to drown.
• 9:53
  Speaker A: I was down at the NIH in April and I spoke and the statistic that came out of that meeting is right now, it's 1. It's the number one cause of death for sure. The age of 18. I'm sorry, the under the age of 14. With autism the number one cause of death. I actually had to leave the room, got physically ill because that's all. But you're right and I'm glad that you're bringing that up to illuminate that as well.
• 10:15
  Speaker B: Well, so that's How I started thinking about kids, like autistic kids and swimming and that. That's sort of like where it began. And then as the story evolved, it was like that support system just sort of came into being because you see Leo and everything that he's willing to try or not try, and it just. It was like an organic thing that happened in the book. So it was just sort of an interesting process for me.
• 10:41
  Speaker A: The title, Breathing Underwater. I have had the amazing fortune of having a wonderful special needs swim teacher in my children's life. And specifically her connection with my daughter Milly is so profound. And when I heard the title of your book, I actually said to her, you know, she goes underwater with Milly a lot. Like they, you know, counting and doing a lot of that, you know, parallel play. And I said, the one I've watched my daughter and son with you for, you know, tens and hundreds of hours on end over the years. I don't know what goes on underwater that's so anxious. I do know that the love of that connection and the pool and the. And those lessons are so profound for them, specifically my daughter Milly that I just. It must be joy. Whatever is underneath that water, I think it's just joy because I can't imagine it being anything but that. And I just love that it resonates with your title of your book.
• 11:35
  Speaker B: It's so interesting because I feel like when it's. You know, they say we have five senses, but to me there's like this other sense when you're underwater. It's like you're existing in this other reality. And I. I always, as a swimmer, loved that. I was, by the way, a terrible swimmer, but I somehow made it onto this swim team and people put up with me, but I just. I loved it. And it was this. There was this calming effect and you could just exist as like this whole other type of being almost. And so I loved bringing that into the story too.
• 12:07
  Speaker A: You know, I. There's so many different aspects of it. And, you know, I focus deeply on the stories of mothers and caregivers, the real maternal intuition and the. And the. What I believe is baked into any woman and mother, which is this primal, unconditional love that is that we cannot strip or separate from. We have to lean into an as greater a capacity as we can, especially with children that. That have, you know, severe, profound disabilities. What, what. As you were researching, you know, and thinking about Leo's character development, what assumptions did you challenge for yourself around caregiving and autism? Because I think again, it's. It's so complex and it's so nuanced per family. But that word caregiving holds a lot of weight, and it can and it for good or for better or for worse.
• 13:01
  Speaker B: I think the biggest challenge, or maybe realization is more fitting for me is that not everybody needs to be fixed and that just because somebody is different than what you might have expected, it doesn't mean that that's not the way they should be. And I really felt like the deeper I got to know Leo as a character, the more I realized that his differences could be viewed as assets and should be. And I also thought it was important to note that also, like, he, for example, doesn't like loud noises, but there's a scene in the book where he blows a whistle really loudly because just because you're one way often doesn't mean you're always that that way. And I think that people have a tendency to view things really black or white, and it's so important to be able to exist in the gray.
• 13:56
  Speaker A: Yeah, without a doubt. You know, I find that the older I get, the more that's illuminated. And also those that can sit in the discomfort of the gray are the ones that do end up having a much more expanded and expansive experience as they age.
• 14:14
  Speaker B: Right.
• 14:14
  Speaker A: You know, Middle Ages know, and especially for caregivers like myself, you know, and I know you as well. It. It really. We are. We become the sandwich generation. And then when there's extra high needs of children, the. If you don't. I always thought people. I get asked a lot, you know, how do. How is this what you choose? And in my mind, I could. I had no altern alternative. I had to choose the gray. I knew that if I chose black and white, I was going to get eaten alive.
• 14:43
  Speaker B: Sure. Well, one thing I learned while writing the book is that in. There's a number of studies that Show Women ages 35 to 54 are by far more stressed than any other demographic. And I think that. Exactly. I think that, you know, it's. There's all these demands and there's all this invisible labor of just keeping track of everything and being the person. And then on top of that, I also think that there's a tendency to think that we're really essential in ways that maybe we aren't. But like, you know, like, every time I go on, like, I'm going to be unreachable for an hour, I feel like I need to text all my kids, like, I'm going to be out. You can't get me for an hour. But like they'll be okay, you know. Uh huh.
• 15:27
  Speaker A: Or another example, I read recently someone said, you know, your partner can pack for the kids.
• 15:34
  Speaker B: Exactly.
• 15:35
  Speaker A: They can do that.
• 15:37
  Speaker B: Except in your mind, aren't they going to do it wrong?
• 15:39
  Speaker A: That's what, and that's what it's saying is that, what, what is wrong though? You know, is it really like that uncertainty of like, well, they might not have this, man, that there's always a solution to that uncertainty. If you get, you know, there, there's, it's never so black and white. It's like, yeah, it might be, oh man, we have to get this X, Y, Z when we get there. Because that wasn't packed. But it really isn't as massive if you can just say, I guess there is an alternative to this, which is
• 16:03
  Speaker B: what I always do. But I think as the parents we, or as the mothers, we feel this need to control also that, you know, control for all the variables. And if we, if we let go and let our partner pack for the kid and then something is forgotten. It's like so uncomfortable for us to live with that. Yeah. And yet important for everybody to try to try to do it, try to do it.
• 16:31
  Speaker A: And I think that again, one of the greatest lessons in, in a life that I never in a million years would have chosen. Right. This is not something I thought, you know, gosh, I really want to be a mother of two children with profound unspeaking autism is that sitting in discomfort and learning through that discomfort is almost like what every major, you know, philosopher and you know, theologian talks about, you know, through, through the ages is, is how we deal with fear and discomfort and control.
• 17:00
  Speaker B: And I think, yet it's so difficult.
• 17:04
  Speaker A: It's the most difficult thing that any, I believe that any woman and mother is charged with, regardless of the children that you have. Could you talk to me more about the development of McKenna's character and how you chose for her to be from this more severe end of the lack of support? Because I come into, you know, contact with one on one aides of my children who, you know, are from a very similar situation where they're learning into a job that they never in a million years would have thought would have been beneficial to their hearts as well.
• 17:39
  Speaker B: Sure. So I actually, so I mentioned I heard that statistic about swimming and like a day later I, I was having this week full of statistics coming into my head. A day later I heard on the radio that, that 8% of American college students experience homelessness sometime during their time in school. And I was like, that can't be right. So you know, I'm on the Internet and it turns out it, it is true. And I just sort of got to thinking like how could that happen? How could somebody like get enrolled in college? And I just started thinking like there are situations where, you know, for example, what if you had an athlete who goes. Is up from a modest background, has limited means and gets a scholarship so that she can get her education and something goes wrong and you could just sort of see that spiraling into a situation where gradually you lose everything. And by the way, that homeless statistic is not, it's not like what you picture, you know, people living in cardboard boxes on the street. It's people crashing on their friends couches and you know, somehow muddling their way through so they can get their education. But it's, it's problematic and it's hard and, and especially for someone, you know, who is only, who has this elderly grandmother who battling her own health challenges. And I think one of the, the themes of the whole book is that we're all struggling. There's cha. And you just never know what other people are going through.
• 19:05
  Speaker A: Not a friend of mine, a dear friend of mine always says I'm not here to participate in the Struggle Olympics and win gold.
• 19:13
  Speaker B: Exactly. Exactly.
• 19:15
  Speaker A: You know, I have a typical 13 year old daughter who like painfully typical. All the typical things. Right. She's 13, she's testing the nest. And the beauty that I get to receive because I have siblings of hers that are so, you know, neurod. Neurodivergent in the most extreme degree is that I actually appreciate her typical development so much more. So that's the gift in my deepest of struggle. My deepest of struggle is raising her siblings. Right. But what is, what is the byproduct of that? And so I think it all just does even out. There's no, there's no gold medal for like who has the hardest of lives.
• 19:51
  Speaker B: Right. And it's so important also to be able to have that perspective where you can take a minute to appreciate virals,
• 19:59
  Speaker A: the, the devirals and the huffed, you
• 20:02
  Speaker B: know, the big sigh of mom. Right.
• 20:04
  Speaker A: Or Dani. You know, I, I actually wrote about this in a subsec article. Gosh, it was a while ago now. My daughter Milly with non speaking autism, her sister Morgan was gone for the week and I found Milly in Morgan's bedroom laughing her tush off, you know, with her device. And I thought she knows that she's gone. She's not, she knows she shouldn't be in here. Her sister would be so, so upset. And I come in, there I go, you know. Exactly. You should not be in here. Morgan is gonna be so mad. And she, like, crossed her legs, like, what's she gonna do about it?
• 20:34
  Speaker B: Right? That's amazing.
• 20:35
  Speaker A: It's so. It was so. It was such a beautifully typical thing to experience that I never thought I would get, which is like the annoying little sister barging into her older sister's room. So those are the things, I think, that illuminate how we are not all. It is not an. It is not who has a tougher level of struggle, because the inch zones of how you translate experience and what is revealed to you is capable for every one of our lives, every single one of us.
• 21:03
  Speaker B: And the other thing also is that I think that what you might not find particularly challenging another person.
• 21:09
  Speaker A: Exactly.
• 21:10
  Speaker B: Might be the worst thing that ever happened to them.
• 21:12
  Speaker A: Exactly. You know, that and how we were raised and our parents and the temperament and the attachment. I mean, we could. I could. I'm sure you could too. You know, I could audit, you know, evolutionary primal development, you know, as a PhD, if I really wanted to, because I love learning about it, but it's so complex. So just sitting in and hearing all the stories, I think, which is why Inchstones exist, is there are millions of stories to be told around specifically this population of autistic individuals. And I'm very, very just so grateful that you used your own gifts to write this. This amazing work.
• 21:49
  Speaker B: Thank you so much.
• 21:50
  Speaker A: Well, Jackie, thank you so much for being here today. This was just a wonderful conversation. I will be linking everything for people to see on the episode summary. And I think, you know, one of the things I will carry with me is that autism isn't just the whole story. It never is. And I think Breathing underwater is so much more about than autism. It's about sacrifice and a word that I know I think about a lot, which is identity and resilience and the way that each one of us, through sharing our stories, can be transformed. And I am a non fiction. I devour a lot of nonfiction. But as someone who knows great fiction, that's what great fiction does. And I believe that your book does exactly that to offer that extra perspective and then return to our own lives that might sit parallel with a little bit more compassion than we have before.
• 22:43
  Speaker B: Well, thank you so much.
• 22:45
  Speaker A: Of course. And Jackie, thank you again for sharing your heart, your words today. And it was a pleasure having you on Inchstones Until next time, everyone. Thank you.