Welcome to this fourth in a series about Young Adults with complex medical conditions transitioning from pediatric to adult medical care. This interview with mother and daughter, Alexis and Sara Snyder, exploring their evolving relationship. Transitioning to plans about Sara with Sara. Sara had to know her body well and communicate what she knew. I’m impressed that Sara was pretty clear about what she wasn’t clear about. Sara values her mom’s health and well-being.
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Previously in series
Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer
Generosity by the Snyder family
About the Show
Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel. Let’s make some sense of all this.
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Welcome to this fourth in a series about Young Adults with complex medical conditions transitioning from pediatric to adult medical care. This interview with mother and daughter, Alexis and Sara Snyder, explores the evolving relationship of a dynamic duo. To make plans about Sara with Sara, Sara has to know her body well and communicate what she knows and what she doesn’t know. Sara was very clear that she values her mom’s health and well-being.
My interviewing and sound editing skills have also evolved. I know I’m only fair at this new medium. Yet, it’s gratifying to learn and grow.
I have links to the previous podcasts in this series in the show notes. I’ve appreciated many of your comments and suggestions. I’ve heard from long time blog followers and new podcast listeners. Keep that feedback coming. I also appreciate the support I’ve gotten from the Podcasting Fellowship alumni. OK. Here’s the podcast.
Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, cisgender, old, white man of privilege, living in a food oasis, who can afford many hats, and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel. Let’s make some sense of all this.
Health Hats: Hi.
Alexis: Hello. Good morning.
Health Hats: One of the things that you said, Alexis, that was very interesting to me and that was new to my understanding: there’s many transitions. So, I wanted to talk with you both about that. Sara from your point of view, the first time that you are realizing that there’s something happening in your life that’s different from other kids. What happened then in relationship to your relationship with your mother? Does that make sense?
Sara: I think so. Well, I know that between grades like moving up every year and Elementary School was a bigger and I guess ordeal for me and for my family to help me so that I have what I need at school. Other than just the other kids they didn’t show up to school the first day and I like oh, you’re my teacher. Cool. Felt like a lot more planning would go into like my education and my teacher is making sure everything set up.
Health Hats: Okay, and you were seeing that you became aware that your mother was engineering on your behalf?
Health Hats: Okay, and so Alexis for you? The recognition that Sara’s getting that something’s happening because I assumed that you’d been doing this already. It wasn’t like, all of a sudden you started managing things. But there was this moment where Sara recognized that you were managing things.
Alexis: Hmm, Do I have a recollection of when she realized that? Yeah. I’m not I’m not sure if I have a particular memory of a point where she was aware that that we were quote-unquote engineering things for her. I think for a while when she speaks about elementary school years and starting to realize that not everybody’s mother went in two or three days before school to sit down with her teacher for an hour or two and go over specific medical needs or pieces of invisible illness or her education. What would be different about her education at the teacher needed to be aware of? If I had to pick a point, I and Sara can tell me if I’m right or wrong. To back up I would think that in the beginning. I don’t even think I recognize it as being too different. It was kind of well, this is my child, and this is what I need to do to make sure she’s safe during the day at school and that teachers understand what’s happening. I would say if I picked a point for Sara that she started to realize it was when we transitioned maybe to second or third grade and we had a new principal. And we had a new temporary school building as well to deal with. After having been used to another building for three years a temporary and old building with lots more obstacles different spacing from the elevator more stairs and dealing with the new physical space and the new principal. I think Sara started to realize the more meetings we had over that. And then some meetings over obstacles with some of the PE teachers, the physical education teachers. I think that might have been a turning point where it where it went from play at gym with friends and fun and being able to control what how much she could do or not do to a more organized physical education class. And having to be more on demand of what the teachers wanted. And having kind of struggles balancing and having PE teachers understand and maybe not follow what her accommodation plan said. And I think I remember multiple meetings in multiple places. And I think Sara might have started to realize it then because I remember at one point her asking to be involved in one of the meetings and they really don’t let you be involved in educational meetings at school until you’re 14.
Health Hats: Interesting.
Alexis: Yeah, and I think that might have been at least in my mind a turning point that oh, well someone’s doing something different for me.
Health Hats: When I think about my own mother is like the things that sort of stand out for me are being really annoyed with her. You know, like my mother was a refugee from Europe a holocaust Survivor, and she was not a normal mother to me. She was like what’s very really weird and so my memories often are about being a being aware of how weird she was. For you Sara was the being coming aware like sort of a grading thing? She’s doing something. I don’t have the control that I want or whatever it is. She’s doing is annoying me or is that what is that like?
Sara: I think like in the moment it was annoying because on whenever we have to go on field trips, she would come so that she could help me and make sure that I’m not getting too hot too cold and making sure that I’m conserving my energy, but then now looking back on that because I had a pretty terrible field trip in middle school that ended with me crying and being very excluded from the rest of the group. I think that was when I was, oh well if my mom wasn’t here right now, like what would actually be happening and be even worse. So now that I look back, I’m kind of thankful that she was always there but like in the moment I was like God, Mom,why are you here? I’m trying to be with my friends.
Alexis: And what’s interesting for me before she started talking about that. I started to have another, kind of aha moment. When did when do I think she realized things were different and that’s a great example? And before Sara started speaking, I was thinking about just the difference in how she gets around. You know so many kids are using the train independently or walking back and forth to each other’s houses. And it’s kind of like God, my mom always has to take me somewhere or my dad. You know, it was also very involved. But Mom is the one who does more you because Mom has more time to do it. And I think and you can ask that more about that. But I think that’s another point on know what age that was where she’s really started to feel it more, but I think as other parents stopped driving their kids around as much and the independently went to each other’s houses or met up at Starbucks or whatever. Whatever Sara does most of the time we’re still dropping and picking up to make it easier. Right.
Sara: Yeah, but that doesn’t really bother me because it’s like kind of nice that I don’t have to like walk somewhere but it also it goes both ways though. It’s nice that like I can just feel hey, can you bring me to so-and-so’s house? But then it’s also oh everyone else is just walking there but like right over time you have to figure out what works best for you and it’s not always what works best for everyone.
Alexis: What about after school at a young age elementary school? Like the middle school years, but we’re in a K to 8 system. So maybe like around fifth or sixth grade where people would start making their own plans to get together at the end of the day. But because they walked home, they could walk home together. But your mom was always sitting outside waiting for you. Then you’d have to come say well can I go to so-and-so’s house or always having to kind of be involved in the planning. No spontaneous planning on your side.
Sara: That’s true. I wasn’t thinking about that
Alexis: Well good. I’m glad it didn’t bother her the way that I think it might have.
Sara: I think the thing that bothered me about me getting around places was not when you drive me. Just even when I’m out walking and usually in a wheelchair or something of the sort. That was what bothered me more but that like doesn’t have anything to do with you. So, I guess that’s like not really well.
Alexis: That probably did at a younger age on field trips and things when you weren’t independently pushing a wheelchair, and somebody needed to push it.
Health Hats: I’m hearing a couple of things. One is that early on it’s about school. As opposed to the doctor or the hospital or something. And there’s something about 14 with making plans with the school that you may have wanted to Include Sara in the planning process. But that wasn’t allowed until she was 14, right? We’re so let’s start with that second one first. So, were you aware that your mom was making plans about you without you?
Sara: Yeah, but I never really considered it like without me because she was doing for me. She was just a person to advocated for me because I legally couldn’t do it for myself and I probably has like a little six-year-old or whatever I couldn’t write properly say what I needed.
Health Hats: So, when 14 happened, were you like then part of the conversation with the school?
Sara: Well 14 was when we were planning the big transition to high school. And I was involved with that. But it was mostly because it took so much time to make sure everything would be in place for when it was time for me to go to high school that my parents would be doing it. Like, wow, I was at school or whatever. But that didn’t bother me because I knew it had to get done to make sure that I wasn’t going to like sink when I got to school. Right,
Health Hats: You have something on your face?
Alexis: Yeah. Yeah. Well, I was thinking about the transition to high school and while it was never like okay now Sara’s 14 while in Middle School, let’s and you know that she was invited by school officials so to speak to an IEP meeting or a 504-accommodation planning meeting. She still was never at the table.
Health Hats: What’s IOP?
Alexis: Oh, IEP an individual education plan. Okay, which at this point she had not been on any longer and has ever since and still has a 504 which is more about accommodations than changes to the educational process. But ways you are accommodated to be successful in the educational process and those transition meetings in eighth grade to ninth grade for high school was a big transition in a lot of ways because the K to 8 system, even though you were 14 still really wasn’t involving you. But the folks at the high school have been so terrific. That although there’s a lot of behind-the-scenes work where I speak with people one-on-one or I and or my husband and I go to a meeting with school officials. All of the meetings we’ve had in high school have been somewhat informal and they have always invited Sara into the room, and she was always there in the summer leading up to starting High School. They always start with asking her what she wants, what she thinks. She’s very involved now in that even though there’s still a process where Mom still needs to step in and advocate sometimes because Sara’s a teenager and learning still in the learning process of speaking up and advocating for herself when something doesn’t necessarily go right at school or medical.
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Health Hats: So how was that get it going to high school and being part of it and being asked what was important to you. Was that a comfortable to do? Was that hard to do?
Sara: I think at first it was it’s exciting. I don’t know the right word, but that it was also like when they react so Sara, how do you feel? I was like, I don’t want to say the wrong thing. But now say in a way that’s what are you trying to say, but now since I’ve been there for almost two years I’m so comfortable with like my Dean and the Headmaster and way easier to communicate all around from me to them. My parents to them. All of us to them.
Alexis: So, and I think it’s important – to the thought I had in my mind before, too. Even from a young age when she wasn’t involved formally, it’s not as if I made all the decisions with school or medically without her. We’re always behind the scenes kind of negotiating and talking things through at home and then bringing all those ideas… Kind of deciding together what might work best. What might not work. What she needs. What she needs more help with. What you need less.
Health Hats: Can you give an example?
Alexis: I think actually a great example is recently. So, second semester of high school this year -sophomore year. Sara’s high school is a large campus of multiple buildings. And so, for her first year of high school and first semester this year, she was able to stay just in the one large main building, which is big enough already. That requires her to use a wheelchair to get around although she’s ambulatory so that she can conserve her energy over the long day and get around the large building which works out great for her. But now the second semester she’s taking an elective that’s in another building. And so that actually might be a piece that she feels different now too that most of the kids just run out of their class and run over the next building and running back. So, for us that being we’ve been thinking about this since before high school started should she need to go to this unified arts building for an elective. It’s not an easy process for Sara to walk out the door and get over there even with the wheelchair. So, the electric component on her wheelchair, for example. Can’t be out in the rain or go through a puddle or go over a lot of rock salt or and safety wise not really easy over ice and snow, etc.
Sara: Not good in the cold and extreme hot.
Alexis: Right and Sara is not good on the extreme cold or the extreme hot. So, the amount of time she’s outside in those is difficult. So, the weather needs to be ideal for her independently to travel between the two buildings. So, we early on… And I say we, meaning me, Sara, my husband, school officials try and mostly the three of us trying to figure out how this was going to happen. And fortunately for us our school is extremely accommodating. But the idea is usually having to start from us to figure that out. And so, when we started advocating about well, it’s almost next semester how we are getting Sara back and forth? They basically said well, what are your ideas about transport? What do you think works? And so, while I could start that process with them and say well here’s what we’re thinking. That was me and Sara sitting down and saying well, what are we going to do? How would it work best? What if we leave the wheelchair at the nurse’s office where there’s a flat exit that you can walk to a vehicle and somebody drives you from point A to point B and etc., back and forth. Was a lot of engineering behind that with what you think would be a simple little plan.
Health Hats: And so, you were an integral part of that? Cuz you knew the lay of the land. Okay. When did you start feeling your mother’s presence at those doctor’s office and thinking about what you wanted and what was important to you?
Sara: Probably around middle school because when you’re like becoming a teenager. The doctor’s more turn to you and be so, how are you feeling? Or what do you think’s going on in your body? And then I’d be like, whoa, I’m answering the questions now and then like since you’re still a kid, you’re not always able to articulate properly what’s going on.
Health Hats: So, you mean articulate you mean that something’s going on and being able to communicate it to somebody that’s not your mom or your dad. Yeah, who does not know the language?
Sara: Yeah, so that Mom would like have to fill in the pieces, fill in where I left blank.
Health Hats: And then so were there times when your mom would do that and you would say no, that’s not, you don’t you don’t have it right Mom?
Sara: No. Mom always gets it, right.
Alexis: And on top of it with the transition to the medical pieces. And I think when we talk about, we were talking about educational-wise it’s an overlap, right because we wouldn’t be so involved in the educational world if it wasn’t for the medical piece. So, I think from an early age Sara seen and having to start advocating and dealing with her medical issues because of school. Does that sound right like that kind of forced you into thinking more about the medical pieces to advocate at school.
Sara: I had to know my body like in and out way before other kids did because what I needed so I could be successful was I guess in a way more important than.
Alexis: And I think anywhere in life if we think about camp, too. I mean from a from the age of four till now and this year Sara will be a CIT in the same camp always preparation there too because of the medical. So, it’s always been there. Yeah, you know no matter what where it’s something recreational, educational, going to the doctor’s office. There’s always this this growing up transition of advocating for yourself and your needs and being aware of what you need without somebody else having to tell you. And I think even camps a good example because the counselors have always been told what to do for you. And now it’s more like well you need to be aware and they’re there to help if you need it. So, there’s been a transition everywhere like we talked about before.
Health Hats: Now thinking ahead a little bit. You’ve got a couple more years of high school and you’re going to be thinking about what comes next. What are you anticipating that might be the next challenge for you in your transitioning into adulthood?
Sara: Probably just figuring out what I want to do with my life in a way that it’s also like. I don’t know what I’m going to say
Alexis: Compatible with your medical.
Sara: Yeah. so that it’s not challenges. Too challenging for myself so that I’m like pushing myself and then I get sick.
Alexis: Challenging medically?
Sara: Yeah, so like finding an area of something I’m passionate about that also works around the fact that some days I’m tired or some days like I can’t push myself too hard. So, like figuring out the balance of happiness and healthiness.
Health Hats: And what are you anticipating Alexis? What are you anticipating next?
Alexis: What’s funny because we talk so much about medical and educational overlapping, you know, being the obstacles. And the first thing that comes to mind of course is a transition from high school to college or whatever program she decides whether it be art school or music school or college. After high school, that’s the next big oh, wow or comfortable at the high school. Now everybody understands where they’re in a good place. Then what, what happens when she graduates? And I think I already always think ahead to what Sara was saying, too. What will she do even after college or even if she wanted career route straight from high school? What does that look like? What with her the things that she loved? And her passions for music or art or whatever it might be that she wants to do in the future. How is she going to end up in a role that where she can be most successful without taxing her medical system? Also the transition probably out of our house around the same time and Sara talks a lot about going to college out of state. We don’t really know what that looks like or where she’ll what you’ll end up doing after graduation right now. But of course, that’s a big worry for me. Right? I mean moms always kind of been the protector and the overseer.
Health Hats: It would be great if she would just go to BU and just be down the street.
Alexis: Right? Right. And actually, that’s something she’s considering we were a couple of schools around here that she’s always been interested in from a young age. But even at that she talks about if she stays locally, living on campus and living in the dorms and that that’s a huge transition in taking care of yourself. And I think it’s interesting to point out that when you ask Sara those questions right after her talking about learning to advocate and articulate herself for herself her needs when she’s answering those questions. She’s saying I’m not quite sure what the right words aren’t she’s looking across the table at me. Did I say that right you can you help out and that’s kind of the transition we’ve been in in the medical world. That’s what hey, you know, she tries to express herself in an appointment and she does very well, but she still looking, you know over her shoulder at me like, is there something I missed? Did I say it right? Do they understand? And I think she’s doing that now.
Health Hats: I’ve told you this before, but I think you’re… Forget your whatever medical things you’re dealing with. I think you’re very well spoken and you’re really, you’re clear about when you’re not clear which that’s not easy. I find that as hard as an adult sometimes. I don’t know and you feel it seems to me that you’re comfortable enough with yourself to say, well I don’t really know. I think that’s amazing. Maybe this is an illusion because I’m a guest in your house, but it seems like you guys have a really good relationship and I wonder Sara I don’t know if this is a norm. I don’t know they’re, there’s thousands, millions of families who are dealing with transition. So, what would you what do you think are keys to your success here as a mother-daughter relationship? Why do you think at least I’m getting the picture of that it’s relatively smooth and maybe that’ll change, in a couple of years when she’ll become a pain in the ass she really is? What do you attribute that that that it does work well? Or it works as well as it works, whatever.
Sara: Yeah, probably on my mom’s part. She’s always open to be like helpful and like to help you with stuff. So that you feel like you can open up about like hey this happened at school today. You know, what should I do about it? I don’t know. I’m feeling like this today. what should I do? Like being able to have someone to lean on for anything so that it’s you’re able to like your best life even with like everything else.
Health Hats: That’s nice. Yeah. Well, one of the things that you know in our you know brief time, we’ve known each other. You’re a very good listener. Maybe that’s some of what you’re saying is that you have a place and you’re respected? Is that my putting words in your mouth? That sounds right. Well, what should I have asked you guys that I haven’t?
Alexis: Well I should probably answer that last question too. Right? So I would say what I think contributes to our… We do have a very good relationship. It’s not a facade. I think a lot of mother daughters at this age do a lot of fighting and a lot of door slamming and a lot of ‘I hate you’ and what whatever and I think I think it’s twofold. I think part of it is because we’ve always had to be, or I’ve always had to be somewhat more overprotective of Sara. That part of it I feel like perhaps and I hope I’m wrong, because I don’t want all of a sudden, have any I hate you and door slamming things and different relationship. But sometimes in life that’s inevitable with teenagers. Some of the time I think it hasn’t hit yet because we’re maybe a little bit behind that turning curve in a relationship because of how involved I’ve had to be and how much of a team we are doing things together. Sara talked about me always being involved in field trips at school. You know, recreationally, we do a lot and as a family, the three of us – Sara’s doesn’t have any siblings- do a lot together. So, I think that close relationship and spending that amount of time together definitely contributed, I hope, to the positive relationship we have and the pieces that Sara was saying always being able to talk to me about her feelings and knowing that we were. I was always there to step in and advocate for her if needed and always kind of be her fighter, so to speak. Had to have brought the relationships perhaps closer than an average mother and daughter that didn’t have to deal with some other pieces. Do you agree?
Alexis: I think when you spend that much time with anybody, and somebody is supporting you. That just brings you closer together and then obviously the other side of that for me not just me being supporter for her. But the close relationship that I have with Sara. Because obviously I love her so dearly. That I worry about her health and her safety and her this and her that and want the best for her. And so that’s kind of always probably pushed the relationship to be close.
Health Hats: One of the things, Sara, that I asked your mom was how she took care of herself? One of the things that in our work with parents and caregivers, it’s very interesting to see how common getting burned out is. And so how have you seen that part for your mom, that her trying to take care of herself so that she can, you know, live the best life possible for herself and be as supportive of you as she can be. Can you tell me anything about that?
Sara: I think my mom is a very on the go person. So, I think partially doing work are like advocating because doing a bunch of things kind of is something that she likes to do. But I feel like on the other hand if she hadn’t like didn’t have to do that for me. Would she actually like to do that, would she actually have the job she has now? So, it’s like I feel like on the other, other hand, I think she feels good knowing that she’s doing stuff for me. So that like at the end of the day everyone’s happy and safe and like secure.
Health Hats: And so that stokes her fire. Yeah, so okay. Yeah. Well, that’s cool.
Sara: I mean at least that’s what I think uh-huh,
Alexis: I think so, but I think Danny was also asking you more about well, I guess you’re saying so I’m capable of kind of caring for my own needs. Although I’m caring for yours because being an on-the-go person and having to deal with so much. I just keep going. Is that what you’re trying to say?
Health Hats: Yeah, so it’s like inertia. That’s who you are. Do you do you ever worry about her taking care of herself or is that not you’re confident that she does?
Sara: Yeah, I feel like she does.
Alexis: I feel like there’s a couple of times where I’ve mentioned some medical need of my own. Which fortunately is, you know, a very small every now and then that I’ve said, oh, well, I don’t have time for that right now. We have too many appointments with you and she’ll be like wait a second job to take care of yourself as well. So, I right.
Sara: Yeah, I wasn’t thinking about that. I was thinking more of taking care of yourself like going to the spa or something. I don’t know.
Alexis: That’s true. Those are stress relievers. I mean, I think that part of for me in the work that I do and that you and I have done together when we travel to DC and advocate for the larger population of folks and patient-centered care and research. I think that Sara realizes, and correct me if I’m wrong, that that’s also even though a job that I’ve grown into probably out of the life that we’ve had together. That’s actually also a stress reliever because I’m able to get away from the average, you know, daily grind so to speak at home and focus in advocacy and empowering patients and empowering for patients in a different setting also away from home while getting some rest and visiting with friends and going out and. And I so I think it’s I think it’s both. I think there’s a balance of her saying that yeah, there’s this go-getting piece and that go-getting piece also gets me that stress-relieving piece and focusing that energy beyond our family’s medical needs. That makes sense?
Health Hats: Thank you. This is great. I really appreciate it. Thank you for taking the time. Thank you.
Alexis: Oh, of course.
Inspiring! Yes?! Sara seems on firm footing to explore the next stages in her life. Her growing confidence builds on the mutual respect of daughter and mother. The next podcast will be for my long-term blog followers who have asked me to honor their preference for the short-written form. The topic will likely be Capacity Building. Whatever your preferences, I will continue to offer both aural and visual formats.
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