PLEASE NOTE: This is a minimally-edited transcript that originates from a program that uses AI.
Anita Rao
This is Embodied, from PRX and WUNC. I’m Anita Rao. Jessica Slice and David Yourdon are an interabled couple with two kids. With Jessica’s physical disability, their parenting journey has been one of adaptation and creativity — often in the face of increased scrutiny.
David Yourdon
When we went out in the world with this very chatty baby and a mom in a power wheelchair, you know, a lot of people are nice, a few people are not, but everybody's looking.
Anita Rao
Today on Embodied: David and Jessica share wisdom from their interabled parenting experience, from learning how to separate their worth from external standards to accepting that all bodies have changing needs.
Jessica Slice
I have to ask for so much help in daily life. I live in a state of interdependence and the experience of becoming disabled was this real reckoning with the uncertainty of any life.
Anita Rao
A conversation about the unique insights of interabled parenting... just ahead, on Embodied.
Not long after they became foster parents, David Yourdon and Jessica Slice welcomed home a newborn. While they had very few baby supplies other than a car seat, Jessica discovered that she was actually better prepared for New Parenthood than she thought because of her physical disability.
Jessica Slice
I had learned at that point I That I am very, very good at problem solving, and I had started to develop a lot of confidence in my ability to figure things out.
Anita Rao
Jessica was several years into the journey of accepting her body's needs and learning to communicate them those skills. Gave her and David A. Strong foundation for working through the vast and constant demands of a newborn.
David Yourdon
The messaging you get is that you should be able to handle things by yourself. And what Jessica had kind of been working through in the years leading up to becoming parents was how you do need help and how the more you ask for help, the better you get at it, the less scary it becomes.
Anita Rao
David and Jessica now have two kids, and as they've learned how to parent as an inner abled couple, they've begun to unearth some parenting wisdom that is relevant for all families. This is embodied a show about sex, relationships, and your health. I am Anita Rao.
There are 4.4 million parents in the US who have a disability, and in a culture that prizes being able-bodied and reinforces strict ideals of what good parenting looks like, disabled parents face a lot of obstacles, both in accessibility and in navigating assumptions about their ability to parent well or at all.
These are barriers that Jessica and David are familiar with. Jessica has postural orthostatic tachycardia syndrome or POTS a disorder that affects her heart rate and makes it difficult for her to stand or sit upright unsupported. She also has ER's, Dan, low syndrome, a connective tissue disorder that affects her joints, skin, and organs.
Jessica documents some of her family story in her new book, unfit Parent, A Disabled Mother, challenges An Inaccessible World. We're gonna hear lots of Jessica and David's reflections and get into the nitty gritty of how they navigate care inside the home and out. But we'll start at the beginning and hear the story of how they decided to become parents in the first place.
Jessica Slice
So in my early twenties. I would say that I didn't want kids because it would take away from the freedom I valued. It would take away from getting to do what I wanted. I would say it would cramp my style, but actually it was because I didn't think I would be a good parent. I thought I would be really hard on a child and demanding and temperamental, and I didn't want to subject a child to myself. And then. Becoming disabled at 28. Part of that is I was sort of just forced to spend a lot of time with myself. Having to be alone with, with the truth of myself had a, a kind of miraculous result, which was that I started to like myself and it was in that transformation that I realized I did have something to offer a child and, and I realized that I really, really wanted to be a mom.
Anita Rao
Tell me more about, um, what happened when you were at 28, the story of, of how everything transpired.
Jessica Slice
I was on a hike in Greece. It's all very like mythical sounding. I encountered a pack of wild dogs and at that point in the hike I already had symptoms of heat exhaustion, and the dogs blocked the path I was on and the, the detour that was required to get away from the dogs meant that I was out in the heat for much longer. It worsened my heat related illness, and that ended up. Triggering a neurological condition that had sort of been laying in weight all that time. So the day before the hike, I was very active, had a very busy life, and then by the day after the hike, I was living in a, in a really, a new body. It was hard for me to get out of bed, hard for me to stand up. Um, was nauseated, dizzy, just sort of a like, ended up with a laundry list of symptoms that had never been there before.
Anita Rao
So David, you met Jessica about four years after this time that she's describing. What were your thoughts and feelings about parenting when you all started dating?
David Yourdon
Kids were not really top of mind for me when I met Jessica, I was in my, my mid thirties, but I still felt like I was figuring. A lot of things out, and it was only when I met Jessica and we started realizing we were going to be together for a long time. That the question even snaked its way into my mind, and I started picturing a life with her and thinking about what that would mean in terms of family.
Anita Rao
So when you all had only been dating for nine months, I believe, Jessica, you signed the two of you up for foster parenting classes, what inspired you to make that decision at that point in y'all's relationship?
Jessica Slice
I think something about me that David probably both likes but also is burdened by, is my moral absolutism and I, I don't think it's a great quality, but I. I tend to think something is wrong or right, and then I am kind of unmovable in that belief until proven otherwise. And I was convinced that because we had a two bedroom house in Oakland where housing is a premium that. It was not excusable for us to not make the second bedroom available for a child who needed it. I didn't think we'd be adopting a child then, but I thought, okay, well I have time. We have this space. We have the energy. I feel emotionally durable enough, so there is really no option.
Anita Rao
So the process of becoming foster parents requires a lot of steps. There are classes, there is application, there is licensing. And Jessica, early on you encountered this tension between tending to your own physical needs and what you felt like was required of you to kind of prove yourself in this system. Can you give me an example of how that tension first began to manifest?
Jessica Slice
So there were these classes you had to take, and it was four, six hour sessions, so 24 hours total called Pride. And the place that it was held was not climate controlled. And part of my disability, I. That I have a really hard time regulating my body temperature, particularly if I get warm. So we needed to attend this class and to, in order to be foster parents, but the second session was warmer than I could handle. Hmm. And so we had to leave early on the second session, and I asked what options we had if they ever did them online, and at this point they didn't. They of course do now and. The person mentioned that maybe I wasn't up for being a parent if I couldn't attend these classes, and I just couldn't be convinced that sitting in a hot room for six hours is, is a requirement for parenthood. But I did feel a lot of pressure to push my body beyond its capacity.
Anita Rao
David, do you have any other kind of memories of that early period and kind of witnessing this tension come up for, for Jessica that the two of you had to navigate together?
David Yourdon
Yeah, I remember those class as well. Another part of Jessica's disability is. That she needs her feet elevated. And so getting adequate seating was often a challenge. It did seem like one of those funny situations you encounter in bureaucracy where you just wonder, how does this 24 hour class in this room somewhere in San Leandro, California relate to my ability to be a parent? When you're sitting there, you don't think like, yes, this is the right place to. Be to learn what I need to learn, and this is the right place to be judged. Just like you know when you go to the DMV and you're bored waiting in line, that doesn't really have anything to do with how you're going to be driving later when you're on the road.
Anita Rao
So you all ended up finding a different course that was in the winter in a building with air conditioning, and that allowed you to complete the required classes for foster parenting, but then there was another part of the process where you had to get a doctor's note attesting to your capacity to parent. Jessica, what do you remember about that experience and the conversation that you had with your physician?
Jessica Slice
I avoided that form till the very end because I was scared. My doctor would say he didn't think I had the capacity. It was the doctor I had been seeing since moving to California and I. By the time I get to doctor's appointments, I'm often feeling quite sick. I have a really hard time, you know, if I had driven there and, and it was hot or, or you know, whatever. At that point, I didn't have a wheelchair. And so by the time I'd get in with him, I couldn't even sit in a upright, in a chair. I would be lying on my side, on his table, and so. I knew he had seen me like that. He had also seen me scared. He had seen me uncertain about how to make things work, taking care of myself in California. And so I worried when I asked him if I could be a parent, he would express concerns or be unwilling to sign the form. So I went to that appointment. I remember, you know how like sweaty and nervous I was and scared and I probably talked really fast and I told him that we had thought about it and that we really thought we could be good parents. And he asked a couple questions like, what do you all plan for doing for childcare? Does your husband get time off work? And, and then at the end he said, I think a child would be lucky to have you and. I remember just feeling so incredibly relieved.
Anita Rao: David, I'm curious about your perspective. You have autism. Did that come up in the process of getting approved to be a foster parent?
David Yourdon
No, it didn't because I didn't know at the time. Um, I still don't have an official diagnosis, so I can only say that it feels true. It explains. A lot of my feelings through my life, and so it didn't come up with my doctor, certainly, and it didn't come up with any of the people running the trainings.
Anita Rao
Jessica, how were you feeling at that moment about your ability to parent in the body that you were in after kind of having been tried by that foster process?
Jessica Slice
It may not sound reasonable, but I was not worried at all.
Anita Rao
Mm-hmm.
Jessica Slice
Even though I couldn't imagine what every single day would look like. I. I felt really confident that we would figure it out.
Anita Rao
Just ahead will hear about what happened when David and Jessica started fostering a newborn baby and how Jessica's experience in a disabled body actually helped ease that transition. You're listening to Embodied from North Carolina Public Radio. A broadcast service of the University of North Carolina at Chapel Hill. You can also hear Embodied as a podcast. Follow and subscribe on your platform of choice. We'll be right back.
This is embodied. I am Anita Rao. We're talking about inter abled parenting today with married couple, Jessica Slice and David Jordan. Jessica became disabled when she was 28 years old. She was on a picturesque kike in Greece and got heat exhaustion, which triggered an underlying neurological disorder called POTS that made it difficult to stand or even sit upright unsupported. In the first few years after this happened, she was overwhelmed by the ways her life shrank and her body suffered. But then. After a while, although the pain and symptoms stayed the same, other things began to shift. She started to let go of some of her perfectionist tendencies and attempts to control the world around her. She met her now husband David, and the two of them decided to become foster parents. Jessica tells some of their story in her new book, unfit Parent, A Disabled Mother Challenges. An inaccessible world. While Jessica and David faced obstacles becoming foster parents, they eventually got approved. They cared for one foster child and not too long after, got a call about a week old baby in the NICU. We're gonna refer to that baby in this conversation by her first initial K.
Jessica Slice
We got this call and they said that Baby Kay only needed a place to stay temporarily. So David went to work the next day because it was supposed to be, you know, we were kind of thinking of it almost like babysitting.
Anita Rao
Mm-hmm.
Jessica Slice
Like we would take care of this newborn until the next step for her. And so I went to the hospital alone and. I didn't have a power wheelchair at that point and can only walk for about 30 seconds to a minute or stand for about 30 seconds to a minute. So I drove to the hospital and then, you know, parked and then had to rest, and then got inside the front door of the hospital and then had to sit down and rest and then checked in at the front desk and sat down and rest. You know, so at that stage of my life I was trying to do things on my own, but it, there was a lot of resting and you know, I sat on the ground in the elevator and. Went up and I scrubbed in and they brought me back into this room lined with little bassinets. And on the right side, about three bassinets up there was a little baby. And I could just tell the way they talked about her that she was really special. Hmm. And I got to meet her and. Her favorite story is that they had this little, you know, uh, disposable formula bottle thing that they used in the nicu, and they gave it to me to give to her, and I was holding her and I put the nipple in her mouth and she was. Sort of uninterested, and then she opened her mouth wider and I realized she wanted the entire top of the bottle inside her mouth, like all the way so that her lips were pressed against the plastic of the bottle. And so I shoved it all the way in, and then she just like downed it immediately and. I think we all love that story 'cause that is her personality. Like she just wants more of the world. And we went to the car and I had to rest for a while before driving home. And I, I remember speaking out loud to her and I looked back in the rear view mirror and I said, um, we love you very much and we're going to do our best.
Anita Rao
Hmm. I wanna pause you there and kind of locate you, David, in this moment. So you go to work, then you come home and there's a baby in your house. What do you remember kind of feeling and and thinking as you walked into your house that evening?
David Yourdon
Well, I remember the first thing I remember is that because I had not been around babies very much, I can actually count on one finger the number of times I had held a baby. So I remember coming home and Jessica was sitting on the bed in the second bedroom and I said, where's the baby? And it was just so small. I, I hadn't, you know, I was just kind of looking for the wrong sized object I guess. Um, so that's my first memory. And then, you know, we had to figure out. One hour at a time, how to take care of her and. How we would divide the responsibilities and what she would need at night. But, uh, just the reality of it, you know, starting from the actual size of the baby was a, was a surprise moment after moment.
Anita Rao
So tell me about that first week. I know it. Can be really physically demanding. It can be, uh, really demanding from a sensory perspective, getting used to the baby's noises and the baby's cries. Jessica, how did you tackle meeting the physical needs of baby K in that first week?
Jessica Slice
Well, so one thing had happened when I returned from the hospital. I posted on the neighborhood Next door group and asked if anyone had any baby supplies they weren't using, and said that we had a baby unexpectedly. And one of the people who replied was a doula and she offered to help us with nights for that first week. So we had a major gift. And she also set up a bottle washing and sanitizing station. You know, she, she kind of swept in like a hippie Mary Poppins, you know, and set us up. So, you know, Renee has a lot to do with the ease of that first week. But I am the oldest of four girls. And I also have a couple dozen cousins and, and I'm the second oldest and I babysat in high school and college and after, so, you know, David can count the babies he had held on one finger and like, I think I've probably held, you know, a couple hundred babies. And so I felt, I think an instinctive comfort. But I did expect it to be really difficult. You know, David. Uh, you can correct me if I'm wrong, but I think you worked normal hours at the beginning, is that right?
David Yourdon
Uh, yeah. I did. I think I even had a business trip to New York a few weeks in.
Jessica Slice
Right, right. Wow. So I think we, he almost changed nothing and I was in grad school and I didn't take any time off of school, which I, I am not saying that's a good way to approach this, but it's true. And, but a thing that was a little magic is that. Kay just, and I got each other like it was like I just totally understood her. I don't know how to explain it, and I would not even say it was true with our second kid in the same way. You know, I adore him and feel very connected with him, but I. But I think it was kind of a once in a lifetime thing and I just got her. And also she was very, very content as long as any part of her body was touching any part of mine.
Anita Rao
Hmm.
Jessica Slice
And so I would tuck her next to me on the sofa while I logged into my grad school classes, and she would just lie there happily. She. She was just so peaceful. If we were touching, if we weren't touching, she wasn't as peaceful, but she wasn't a baby who needed to be constantly bounced and adjusted. She just needed that proximity. I dunno, I think it's one of the, um, most natural times of my life where those early weeks
Anita Rao
You mentioned Renee, the night doula, who helped you all adjust at the beginning. And Jessica, you interviewed her for your book about her time with your family. And one of the things that she said that I found really striking was. That she noticed that you didn't abandon yourself, you didn't pretend that you didn't have needs. I'd love to know more about how your needs were showing up in that early time and how you found a way to balance your own needs with the baby's needs.
Jessica Slice
Well, you know, I can't. Stand for very long or sit upright for very long. And I didn't try to do anything that would require me to, so I was sort of like set out a bottle situation on the floor and make all the bottles while sitting on the floor. I changed Kay's diapers while in bed, you know, just setting a blanket on the bed. I think probably what Renee was observing is that I wasn't, the way I was going about the days wasn't. Like the way I had seen parenting pictured. Mm-hmm. It was the way I could do it and so it was just working for my body. And Al also, I think a big part of it is that I. Like I had been training to do nothing for years at that point. You know, I had been sick or disabled for six years and had really had to get used to spending most of my day in bed or on the sofa resting. I think of the version of me who was not disabled yet and how busy I liked being and how much I craved excitement and novelty. And I think it would've been much, much harder to adjust to parenting because I, you know, they limit your life so much. But I, I already had a very limited life. And so I did. Yeah. I just didn't have that obstacle.
Anita Rao
Jessica. So you had your own experience kind of transitioning in those newborn days, but for your book, you talked with a number of other parents and you have this conclusion that is surprising that being disabled can actually really ease the transition into parenthood. Can you share some examples of what that looks like?
Jessica Slice
I think that there's this part of taking care of a newborn that's like viscerally terrifying because everything they do feels really erratic. Like they eat in weird ways. They poop in weird ways. They breathe really fast and then stop breathing for a little bit. They grunt and you know, while sleeping. It's like everything. It's like this confrontation with how fragile bodies are. I think that it also gets really, like pushes up against this fear we have of, of need and dependence. Like there's this, you know, talking to people about the early days of parenting. It can feel like really destabilizing or scary to be so dependent on for everything. Suddenly, yeah, it's like we culturally don't love care or need, and then also if you're the person who's given birth, you have your own need and recovery. And so it's like this, like my asthma of like death and need and fragility and all this stuff that we are terrified of culturally. And then you. Are forced to look right at that. And disability, it's not pleasant, but disability really makes you acknowledge fragility constantly and need constantly, like I have to ask for so much help in daily life. I live in a state of interdependence and. The experience of becoming disabled was this real reckoning with the uncertainty of any life, and so that part of newborn parenting, it just wasn't, isn't fresh, wasn't fresh for me, and isn't fresh for a lot of disabled people. There's this sense of like, yeah, we're all little fragile and needy, and that's. That's the deal. And, and I don't know that it, it feels that way if you haven't been through it already.
Anita Rao
David, I'm curious about your reflections on that piece and, and especially the interdependence, like learning how and being comfortable asking for help, acknowledging that you can't do this alone. How did your own relationship with interdependence evolve as you cared for Baby Kay with Jessica?
David Yourdon
Yeah, I think as an introvert, the idea of asking anyone for anything, including the weather, you know, it's always kind of something I want to avoid, but it became increasingly clear that, you know, we couldn't do this alone. That we would need help from people that, you know, my schedule, my cherished schedule would have to change and I would have to be. Unreliable at work and unreliable in other ways. Where previously I had been, you know, perfectly reliable. And I think, you know, what Jessica's saying is very true. That the messaging you get when you're not a parent, but also when you are a parent, is that you should be able to handle things by yourself. You shouldn't need help and. I think what Jessica had kind of been working through in the years leading up to becoming a parent was how you do need help and how the more you ask for help, the better you get at it, the less scary it becomes, and the stronger the bonds between you and other people become, and it gets progressively easier.
Anita Rao
You all brought Baby K home, thought that she was just gonna stay for a couple of days. That turned into months and eventually about a year into having her with you all, you all formally adopted her. Jessica, you draw this really firm distinction in your book between the experience of parenting K at home versus out in the world. And David, I wanna ask you about. That, like the memories that come to mind for you of any difficulties that y'all face navigating your parenting dynamic that was well established at home once you were out in the world?
David Yourdon
I think we got a lot of stares. You know, we're, we're kind of a very obvious family, you know, if you wanna describe. Us to a stranger or to another group of parents, it's very easy to, to identify us visually. So, um, I think at home I. The quirks, let's say, of of our family and how we operated, felt very natural. 'cause our home was our natural environment. But when we went out, you know, I, I like to blend in as much as possible. I wear shirts without words and neutral colors. And, you know, if I could be a a plant, I would be a plant. But, um, when we went out in the world with this very chatty baby and. A mom in a power wheelchair. You know, a lot of people are nice, a few people are not, but everybody's looking.
Anita Rao
Mm.
David Yourdon
And so that took a lot of getting used to, I think. Every parent, especially when their kid's acting up in one way or another, feels like there's a spotlight on them and wishes they could get out of it. But, um, for me it felt like the spotlight was always on and that that took some skin thickening, let's say.
Anita Rao
Well, there's also this dark side to that spotlight always being on Jessica, that you talk about in your book and, and, and how it kind of manifested for you sometimes as. An urge to perform being an especially good parent 'cause you felt like you were being watched and and judged. Can you take me into how and where that showed up for you?
Jessica Slice
Of course. So, you know, there is not a disabled parent who isn't aware of and constantly thinking about the rate of child removal for disabled parents that you know in. Right now it's 22 states. A child can be removed by Child Protective Services just because the parent is disabled and it's deemed like likely that the disability will lead to neglect or mistreatment. The standards are often like, how closely does this match non-disabled parenting? Not actually how safe. Is this for the child? And so there's this, there's this feeling that I have when out in the world or when interacting with doctors or you know, anyone who takes care of my kids, who I know you know has is easy, a mandated reporter or has this connection to child removal. I'm just so aware of my performance of motherhood and this. These incredibly high stakes of not being able to show any weakness. There was a mom I interviewed for the book who's blind, and she gave birth, and the first time she tried to breastfeed, she had trouble with the baby's latch and she started crying from exhaustion, from labor and from the frustration and. Her crying caused her to get reported to Child Protective Services and they said that she probably wasn't fit and, and she prevailed and didn't lose custody. But I think it's a real example of this, you know, extremely high standard that disabled people are held to. Because I think a non-disabled person who cries about nursing would just, I think that's assumed that people will cry about nursing.
Anita Rao
So Jessica, you were mentioning earlier this. Realization that you had in parenting that. If you were holding yourself to the standard of routines that you'd inherited, that you were supposed to follow, then yeah, you weren't gonna be able to parent in the way that you thought. But if you were creative and, and were just doing what was best for your kid, you were able to parent well, this, this idea that. Disabled parenting involves creativity. It involves creating solutions that are safe and loving and beautiful in their own right. I'd love to know some examples of what those day-to-day creative routines look like as K started to grow up, became a toddler and a young kid.
Jessica Slice
The first thing I think of is that we never really used a high chair, or we waited a long time to use a high chair. We had this like chair that sat on the ground, and then I would sit on the ground next to it and then I could lie on the ground when I needed to so that I could feed her when we were potty training her, you know, and the, the, the videos we saw parent, it showed how a parent would sort of lean above the kid to. Wipe their booty and I could never stand and lean in that way for long enough to do it. So we taught her a song and routine where I guess not to be too graphic, like she would poop and then lean Oh, is welcome. She would lean in front. Front of us, and I would go look at that butt and she'd say, booty, and then I'd wipe her. And so that way I could lean on the F or sit on the floor leaning against the wall and the way my body needed while taking care of her bathrooming. And so I think it, it's just like a a thousand little. Adjustments like that, but not even adjustments to the norm. It was just, do you know, doing it our own way.
Anita Rao
Just ahead, we'll hear about the newest addition to Jessica and David's family, baby f. And how bringing him into the fold has shifted how they balance the demands of parenting with taking care of their own body's needs, plus what wisdom they have to pass on to other parents. We'll be right back.
This is embodied. I am Anita Rao. When Jessica Slice and David Jordan first became parents, they knew their family life would require lots of creative problem solving. Jessica has pots a neurological condition that affects her heart rate and makes it difficult for her to stand or sit upright for long periods. She also has Ehlers' Danlos syndrome, a connective tissue disorder. When she and David started fostering, they're now adopt. Daughter Kay. They made parenting routines that fit their family, dividing labor based on their abilities, adapting baby gear to fit Jessica's body's needs, and calling on a network of community support. Jessica writes about this in her new book, unfit Parent, A Disabled Mother, challenges an Inaccessible World. Jessica and David's daughter, Kay is now eight years old, and in early 2024, they brought another baby into their family via surrogacy Baby F. With the increased amount of physical and emotional care that goes into raising two kids, Jessica and David have a secret weapon for staying organized and meeting their needs.
David Yourdon
Uh, we have many spreadsheets. Tell me about your spreadsheets. That's your questions. Well, we have one for house management, which has daily tasks, weekly tasks, biweekly tasks, monthly tasks, bimonthly tasks, just to make sure that. Especially because Jessica's the one who notices when things are askew in the house, but I'm typically the one who fixes them, so to speak. It's a way for us to kind of stay in sync on the household management, and then we also have some for. Ourselves, like our own kind of relationship check-in. And we have things for our kids as well. It's also the case whether because we've just gotten older, because the world has gotten seemingly a lot heavier in the last few years, we are a lot more tired. Mm. So it takes a lot of communication and grace and forgiveness to, you know, just make it from sun up to sundown.
Anita Rao
Jessica, I'm curious to pull on one of the threads that I heard in David's answer, which is that Jessica notices things a lot and, and might be the one to kind of put that down. We, we talk a lot about kind of dynamics and couples and this idea of emotional labor and, and mental labor, but for you all, it, it seems like it kind of plays out in a way that like David is the one doing more of the physical labor and you are doing more of the emotional labor. Like is that a balance that, that you all have talked about in that kind of. Works for your parenting?
Jessica Slice
Yeah, it's, it's the balance we have and it's the balance that, that, that's necessary because of my physical capacities. But I think knowing my inclinations, if I weren't forced to ask David to do things that I would probably. End up doing both. You know, even if David wanted to help, I would sort of insist on doing all physical and, uh, mental tasks because I, uh, would like things to meet my standards. And so it, I am not saying it's the only way to have gender equity in labor, but one way is to have one person incapable of doing much physically. There are times when I feel really overwhelmed with the behind the scenes work and the coordination work, but I also know there's a lot of times when David feels overwhelmed with the physical work and I think, I feel like we, neither of us thinks the other person isn't trying very hard. Mm. Those was two negatives, but I never think David, uh, is doing anything but his. Best. I mean, it, it doesn't like, it doesn't stop me from being, like, wanting things cleaner, but it, but we're both hard workers. Yeah. And we both care. And I think, I, I don't know. I think we're kind of always holding that.
Anita Rao
So K is now eight years old. How do you talk with her about your disability and, and how much does she understand about your experience and your body?
Jessica Slice
We talk about it so openly, and I write about this some, but she's neurodivergent. You know, we talk about David being autistic. There's a real sense in this family that we're all pretty needy and have specific limitations, and we kind of talk about them as they relate to each other, like. That if someone has a hard time doing a zipper or a button that is similar to the way it is hard for me to go upstairs. Mm. You, you know, there's just kind of a lot of discussion about bodies. I would guess as she gets older, her stance or her opinion on my disability or how more, more what I mean is like how she sees that it affects her will change. But right now she kind of likes it. I think she likes that I have a wheelchair, Uhhuh because it's a place for her to sit on my lap. She really likes going for walks with the baby on my lap and walking next to me. She just kind of. The chair is like a pleasant part of her experience. She is like, she's pretty considerate. Not always, but, but often she's very considerate of my needs. Like if I go into a room she's in, she knows the seat I'm most comfortable on, and she'll move out of the way or set up, you know, if we're watching a movie together, she'll set up pillows for me ahead of time. And I don't know, I think some people talk about. Like, is that too much to put on a kid? But I would certainly, like, I, I don't feel like the risk is that she's becoming too others focused. I think like encouraging a consideration of another person's experience is a, is a good thing.
Anita Rao
You mentioned that K is neurodivergent. David. I'm curious if you have had any conversations with K about. Autism and your disability versus how her brain works, how that unfolds between the two of you?
David Yourdon
Oh yeah, that comes up a lot. You know, we are alike in many ways and alike in many ways, specifically with respect to autism. You know, there are ways it presents in her that it doesn't in me and vice versa, but there are a lot of times where the overlap. To me is very clear and I feel like I know exactly how to speak with her. And not to throw you under the bus, Jessica, but if, you know, if you're saying something to her or asking her questions, even, you know, very polite questions. Like, tell me one thing that happened at school. You know, I can feel my hackles get up and be like, ah, don't make me produce a sentence. Um, so I, I feel like it's, it's been very, I don't wanna speak for her, but hopefully it feels helpful like that in those moments. I know what Kay is feeling and what she needs, which is usually just a little bit of space and a little bit of time. And so, yeah, I, I think it's been useful.
Anita Rao
In this phase when you are doing a lot of the more physical work and you all have a, a 1-year-old and an 8-year-old who you know do need a lot from the two of you, how are you seeking support and making sure you're taking care of your own needs? David?
David Yourdon
I was will say, we have a nanny full-time, a very, very good nanny. I was on parental leave for. Over a year, because we live in Canada now.
Anita Rao
Canada.
David Yourdon
And, yeah. Yep. Uh, so yeah, it was actually a 14 month leave and during that time, you know, I was not working and that, that made it a lot easier. Now that I'm back at work, uh, we certainly rely on our nanny, but it's even, so, you know, when you're a parent, it, it feels like. A second job where you never clock out. So, uh, I think it's just required us to be very communicative about what we need from each other and also at the end of the day to kind of forgive ourselves for the ways we came up short. But there's not much more you can do than try your best and forgive yourself when you don't achieve what you hope to.
Anita Rao
Jessica, you share in your writing that there are still moments where you feel some judgment about how your parenting looks compared to the ideals that you've inherited or what you might witness other people doing. How do you talk yourself through those moments?
Jessica Slice
I think I am pretty good at bringing myself back to my values. So the way I feel insecure about my parenting is that there's this like style of, I, people call it intensive parenting, but like kids signed up for a bunch of activities or craft projects or lunchboxes that look really beautiful or, um, I, I don't even know the things because I'm so removed from this type of parenting. I think none of that was true. Our parenting is. Pretty, oh God, I, it's low standard in this really specific way. It's like low ambition with creating projects, signing out for activities. The other weekend we met someone at the park for one hour on Saturday, and that was the only activity all weekend. And on Sunday we said, oof. That was such a busy weekend. Like we just don't do very much. And so I, I do, I feel insecure when I, particularly social media, like helps me witness the way other people live. And the thing that brings me away from that insecurity is that my personal value is that my kids will know what they're going to get with me, which is consistency and kindness and patience and. David and I are both incredibly patient and consistent parents, and we are very, very nice to our kids and we are also very predictable. Like our rules are predictable, our boundaries are predictable. I think this is a very safe house to live in, and if I really think about it, I'm like, okay, then I'm doing it, then I'm doing it. Their diet is not great. There's a lot of chicken nuggets and a lot of ketchup and a lot of prepackaged snacks, but I'm doing, and we are doing the things we really care about.
Anita Rao
David, there are a lot of conversations that Jessica has in this book about solutions and, and wisdom from disabled parents that apply to all parents regardless of ability. Are there any of those lessons in particular that you have really taken to heart and inform your parenting philosophy?
David Yourdon
The one that really stands out to me, I think is adaptability, and it's also the one that you know is hardest for me, but I think she has a line in the book where we shouldn't be judged on. How good we are at doing things for our kids, but rather how good we are at marshaling help for our kids. Mm. And you know, the whole thing I've learned in being a parent is kind of figuring out what you need to change about your own. Stances towards parenting and often they're, they can be very brittle stances for whatever reasons and adapting them to the situation that you're actually in. You know, maybe you're not the kind of parent or maybe your kid's, not the kind of kid who can do that jam packed Saturday afternoon, and you have to just take it easy or maybe. You're the kind of family where you need to ask for help that's embarrassing or would be to the average person. So I think what she's shown me and what I've figured out is that you really need to adapt and, uh, not just kind of plunge into parenting the way that. You think it ought to be done and kind of received wisdom that you've been given you, you have to adapt and you have to be fearless about it.
Anita Rao
Jessica, you say in the book that the truth is that you would pick this version of yourself and this version of your days over the life that you had before you became disabled. I would love to hear more about that reflection and, and where you currently are in your relationship with your body and, and disability as a parent.
Jessica Slice
Yeah, I think that would be surprising to people who knew the, what my days looked like before disability versus now. You know, right now I spend almost all of my time either on an adjustable bed or in my power wheelchair. I am always in pain. I am always dizzy and nauseated and fatigued and, and there are. Really firm limitations on what I can do. And I don't know exactly why I would pick this. I know part of it is that before I was disabled I thought that I could, I. Have a good life if I worked hard enough that I thought there was some sort of goal that was within my power to achieve, and I felt like it was like always just out of reach that I was about to have a good life and, and becoming disabled made me realize that that's, that's just not really how it works. That like every life is kind of demarcated by suffering and. I think part of is acceptance. I think part of it is this, this constant wrestling with control and figuring out what's up to me and what's not up to me. I like my life and I like myself, and that wasn't true before.
Anita Rao
I would love to end asking you both for. A story or an example where these lessons of disability, wisdom and parenting really showed themselves where your, your kids were able to kind of articulate their needs, where you were able to articulate yours, where you were kind of practicing adaptability and, and flexibility and grace with yourselves. I don't know if there's a, a recent example that comes to mind for either of you that you would offer.
Jessica Slice
I remember when K had a birthday party. We talked ahead of time because she can get pretty overwhelmed in group situations or in new situations, and we came up with a plan together that if she started feeling overwhelmed or like it was too much, that she would say ET to me, and that that meant that she needed to get out of there. And so. We had a sort of bigger birthday party for her, and I was talking with some adults and then I heard her say ET, and I stopped my conversation. I went to her, she climbed onto my lap on my wheelchair. We wheeled away together, away from everyone, and we didn't talk at all. And the agreement was when she felt ready to rejoin the party, she would say phone home. And so then after a few minutes, she said, phone home. And it happened a few more times. And I think one of the most like correct feelings that I ever get is the feeling that I, that I have when I'm on my wheelchair and a kid is on my lap and their head is pressed kind of right on my sternum. Hmm. I just feel like such a sense of peace there that I'm keeping them safe and that I'm giving them what they need.
Anita Rao
You can find out more about David and Jessica at our website, embodiedwunc.org. We have links there to Jessica's book and other writing, as well as all episodes of Embodied. Today's episode was produced by Kaia Findlay and edited by Amanda Magnus. Nina Scott is our intern, and Jenni Lawson, our technical director. Quilla wrote our theme music. This program is recorded at the American Tobacco Historic District. North Carolina Public Radio is a broadcast service of the University of North Carolina at Chapel Hill. I'm Anita Rao.