A Mother-Daughter Talk on Growing Up with Epilepsy

In this episode, we reverse the roles and sit down with podcast host Jordan and her mom, Mary, as a guest host. Jordan shares her journey living with epilepsy, from moving out at 17 to earning a master’s degree at 23. Reflecting on their early experiences, they discuss the uncertainties they faced when symptoms first appeared and the moments of clarity that emerged along the way. They explore what they felt they got “right” during Jordan’s childhood and the resources they wish had been available. Drawing from their experiences with YAWE, they talk about the invaluable support the organization provides and the upcoming projects such as parental support groups and expanded resources.

Mary (00:00.108)

And hopefully, you know, I have instilled in you that you are not your epilepsy. I've always thought of it as just one of the pieces of you, not all of you. So you are my kid who's five seven, you are my kid who loves horses, you are my kid who loves to surf, and you are my kid who has epilepsy.

Jordan (00:22.994)

Welcome back to Young Adult with EpiMarylepsy's podcast carpe season, a podcast by a young adult with epilepsy for young adults with epilepsy. On today's podcast we have Mary Werner, my mother. She'll be guest hosting today so we can get a bit of a parental view and since so many people will want to know more about me. Welcome to the podcast, mom!

Welcome, happy to be here. Jumping right in and in control. Perfect. So let me start off where we start these all off. Jordan, tell me a little bit about your epilepsy journey.

Yeah.

Jordan (00:56.822)

Yeah, so I first had, and you can in fact check me on all these things as you're the one that has experienced all of this, but I had my first seizure when I was eight months old and at that point I think they thought that I had a stroke and utero. And then I kept having seizures and they at some point

Right? Correct. Yeah.

Jordan (01:19.278)

diagnosed me with cerebral palsy, really odd, it's still on my medical records, it still says I have it. I notice that every time I go to the doctor. And at that point, that was the diagnosis because I was having a very hard time with motor function in the left side of my body. Not being able to do those fine motor skills, having loss of feeling.

Fast forward to when I was 11 or 12, they finally figured out that my right frontal lobe hadn't fully formed in my brain because I guess your brain is all wrinkly when you're a small child and it like pops out and becomes less wrinkly and what like a normal brain looks like and I basically have a type of epilepsy that involves Todd's paralysis which

why I have that numbness on my left side and those feelings because Todd's paralysis basically mimics a stroke when you're having a seizure and so you have that paralysis of one side of the body all those other symptoms but so I they learned that then and that's when they discovered that I had epilepsy but at that point I was only having

partial focal seizures on the left side of my body. And we went through a bunch of medication, as you know, and eventually we found ones that worked for me. And up until about the age of 15, 16, maybe younger, maybe 14, sometime in that early high school period, my neurologist was like, okay, you're doing so well, you've been at a seizure and I think it was two or three years.

Couple years.

Jordan (02:54.73)

yeah, this medicine is doing like you're doing great. We think you probably grow out of your epilepsy since that is something that can happen. Fast forward. They took me off of my medication slowly. I was fully off of my medication for a few months. And then I had a devastating grand mal seizure for the first time. I remember I had it in PE class in like a gym parking lot. was

In a parking lot, yep.

An experience for everyone. Luckily, my friend caught me before I hit the ground. And then, obviously, I didn't grow out of my epilepsy, but ever since then, I've only had, for the most part, grand mal seizures. So the full unconscious, convulsing kind of what you see on TV when they show people having seizures. yes, I've definitely, it's definitely progressed throughout the years, but now I'm here with my grand mal seizures.

Yep. And some of the changes for diagnosis for you was actually based on testing. When you were eight months old and they were running CAT scans and MRIs and those types of tests, they explained it to me that it was kind of looking at your brain through stained glass. And so it wasn't a clear picture. was hard to see exactly what was going on. By the time you were a teenager and having a grand mal seizure,

the testing had come to a point where they could show us on a video slide by slide as we cut down through your brain, exactly the areas that hadn't had developed. And that's where the misfire comes from you. It's an area of your brain that just didn't fully develop. And that's when we were able to get into more of the true epilepsy diagnosis because the testing allowed us to just see better at that point actually. Yeah. So, you know, I think in retrospect, some of that testing is an interesting segue. There was a whole bunch of us just, you know, kind of,

Mary (04:50.762)

When your journey started, we were blindfolded working in the dark. We had no idea what we were up against. We didn't know anyone with epilepsy. We didn't really know a lot about it. And it was all us just trying to figure it out. So I would, I'd love to know what you think we got right. Since we were stumbling in the dark, what do you think, you know, we did right in your journey?

Yeah, I think...

there's a couple things and a lot of them were mostly how much work you and dad put in. I think the first thing was just, and this might sound awful, but forcing me to do things in a lot of ways and not like forcing me as an adult, but like sending me to physical therapy for a very long time when I was a child because I know in that moment every time we had you were like, okay, we have to go to physical therapy today. I was like, I don't want to be here. I don't want to learn

to do these things. Like I so distinctly remember I had to learn how to do like this motion to like take off a shirt because I couldn't do like that crossing motion and it took me so long and it made me so angry. I'm like five years old. I remember it so distinctly. But I feel like being able to kind of push me to do those things when I was younger.

really helped with where I am now, obviously, because I have the ability to, you know, move my fingers kind of independently and do a lot of things I wouldn't be able to do otherwise. And so it was a lot of that pushing forward, which I think also streamed into the being able to get me the correct diagnosis because you two are always trying to figure out what was happening, especially when things didn't feel right, which I'm assuming

Jordan (06:30.574)

Probably was what was happening And so that I think is something that you guys are really right the other thing I would say is and This could be partially a product of the fact that I have had epilepsy for all but eight months of my life, so 23 and something years I Feel like you never made me feel different and I think part of that was that

I, the only time I was ever really differentiated when I was younger, at least I feel was when I had to wear my little leg brace thing to help me be able to walk on my left side since I didn't have that motor skill, I would like drag my toes and fall constantly. And so they were attempting to put my foot straight and then I need to gringle. but

I somehow never felt different and I think part of it was because kids at that age, like I remember in kindergarten, you know, they may ask one question, but kindergartners aren't really going to judge their parents and be like, no, don't say that. Like be nice to that kid. But also at the same time, you did things to make it fun. I so distinctly remember with my best friend when I was like,

little Kathy, I remember you taking me and she would sometimes come with us like for hanging out after school. When I would get it refit, we would get to put like fun designs on it like little paint airbrush things. I remember doing like butterflies and like pink flowers and such. So I feel like there was always those little elements of joy.

Another thing I would say, my final thing, this is a very long-winded answer, but it's an important answer, I think, and this is for when I became older and in my teen years, you really instilled the sense of that East Coast attitude in me, I feel like in a way that you have where, and I still have this to this day, where kind of...

Jordan (08:25.518)

pushing back on people in a way and standing up for myself. Like really simple example is whenever people ask me why I don't drive, which really...

at end of the day, epilepsy or not, it's none of their business. But like the thing, the ongoing thing that we have is like, I hit someone, like I lost my license. Like always making a joke out of it, something outlandish, because like, it's not your business to be asking me that. And so always having those remarks given back and having that way to advocate for myself and stand up for myself like as a human. So yes.

Yeah. Well, and I think, you know, to your point, every epilepsy journey is unique and those Todd seizures made you unique. They come with a temporary paralysis and every seizure of that type leaves a mark. Your muscles would deteriorate a little bit with everyone. So we went through years of PT and OT, fine motor skills and enlarged muscle group skills because you're growing and you're having those seizures. So, you know,

we have to keep the muscles up to speed. have to keep the leg, you know, the foot where it's supposed to be. And you were right, you hated them. We went to them for a long time. We had, you know, obstacle courses in the backyard for you to work on PT at home. And you didn't enjoy them, but it was something we felt we needed to do because we had to get you to a point where you could handle those things. So I definitely agree with you on that.

Fortunately, think that boot you had to wear, like you said, was at a time where it wasn't high school when everyone was going to mock you for it. was kindergarten where kids kind of move on. And that was really the only external thing you had to have. Once we got past that, think, who knew what we were working on? Who knew what you were encountering? And hopefully, I have instilled in you that you are not your epilepsy.

Mary (10:26.87)

I've always thought of it as just one of the pieces of you, not all of you. So you are my kid who's five, seven. You are my kid who loves horses. You are my kid who loves to surf and you are my kid who has epilepsy. It's just part of who you are. So I've always felt the job of a parent is not to focus in on, you know, controlling a kid and trying to make the kid exactly what you want them to be. Your job is to put a tool belt on them and fill that tool belt with

what they need to live a healthy and productive life as an adult in this society. So are you teaching them problem solving skills? Are you teaching them communication skills? Are you teaching them how to stand up for themselves? Are you teaching them how to be independent and how to seek support? And so hopefully by taking that parenting approach, that's part of what worked out well for you. So talking about

support. think that's an interesting piece for for Yahweh. know, they have enabled you to build a community and get support in areas that we haven't before. And so let's talk about the flip side of the coin. Have you learned anything? You're like, maybe we could have done that better now seeing what others have experienced or what they've been able to do.

Yeah.

And I don't think this is a blame on you as a parent at all. It's just when 23 years ago there wasn't the resources that there were now. And I think something for parents that are going through this now is, and something that Yahweh has that we don't talk about as much as peer support groups, but is the education part of it. Because so many parents go into it. And I mean, I know that you didn't know anyone else with epilepsy, and this was something that you were definitely going through.

Jordan (12:16.24)

alone but so many parents go into it thinking it's this one-sided thing. I was talking to someone else about this and it's really all the representation you get of epilepsy is like on TVs and movies and it's all one specific kind of epilepsy. It doesn't give you the full picture and for something that affects one in 26 people you really don't know a lot of people with epilepsy and so I think the big thing for parents now

that live in this day and age is being able to have those resources because there's just so much unknown and that comes from so many things. It comes from not understanding side effects and how your child is feeling. can lead to like you finding a new diagnosis, which we have a story about that if you want to tell that story because this is an insane thing that happened to us recently.

I can jump in and share on that one. It was a strange story. I think your journey and your diagnosis was, as we've mentioned, in kind of a different healthcare time, and it went pretty smoothly. But we had a mutual friend who was talking to a guy at work, and he's like, man, my two-year-old has been diagnosed with epilepsy.

The medications don't seem to be working and I don't know if I'm doing the right thing by her. I don't know how well she's doing. I hate to see her so overly medicated. This is costing me a ton of money. I'm just kind of at my wit's end. And she said, let me have you talk to someone. I've got a friend who has a child with epilepsy. Maybe she has some ideas. Maybe she can just provide a sounding board, but let me give you an opportunity maybe to find some community, which she hadn't done. And so,

I made a coffee appointment, sat down with him for 90 minutes, and honestly, it broke my heart sitting with him. The money that he had spent, he'd sold his car, he'd spent every penny of an HSA he'd saved for years, and he was still being faced with, want to do this genetic testing on every member of your family, it's $15,000. He was just getting on a regular basis these kind of suggestions from the healthcare system that just wasn't supporting him.

Mary (14:28.498)

And in the 90 minutes that I spent with him having coffee, I watched at least 15 episodes with his two year old. And so it wasn't working. What he was doing, I could tell why he was so upset. It just wasn't working. And so interestingly enough, I went back and talked to you and because you've got some of those databases and organizational support, you've talked to others about different types of epilepsy and seizures. And you kind of came back to me and said, those don't sound like epileptic.

episodes. sound like narcolepsy. Strangely enough, they're not really matching the profile well to what we're used to here at Yahweh, what we know and what we've seen. And I did a little Googling and found something under narcolepsy called cataplexy. And I went, wow, that's exactly what this child is having. Strangely enough, that's what's happening to her. So I sent it over to him and he ran it by his pediatrician who ran it by his neurologist who

found out because of the gene studies that they had done, she had a mutation in her genes that only 51 people in the world have been identified as having, and it's a narcoleptic result from the mutation. So miraculously, we helped diagnose an individual without any PhDs or neurology information. We were able to get him on a path where she's immediately on the new medicine. 80 % of her episodes were concluded.

controlled and they were working to get better towards it. So, you it made a huge difference for him that those resources were available and we were able to provide that kind of information for sure.

Yeah, I think it's so important. And that's why at Yahweh, we're soon launching parent support groups, because it's how you get that education and those resources. Obviously, if he had never talked to you, he probably would have taken a lot of more money and a lot more time to figure out what was happening to her and having that community is so important. Because I know even after the fact before you had

Jordan (16:36.724)

done the Googling and we had kind of talked and I was really don't think that's epilepsy, which I'm not a doctor don't come to us for diagnosis. But like just having someone to talk to about it, I know was so important to him. And the ability to have that like relation. And do you think that the parental support groups would have been helpful for you when I was a kid?

Good luck.

Mary (17:02.734)

Yeah, think we didn't know what we didn't know. I think is the best way to explain it. As I said, we didn't know anyone with epilepsy. My brother was diagnosed with epilepsy much, much later in life. So, and I know you've mentioned before that he had it, but you were at least eight years old before he had his first seizure and started on his path. So we didn't have even within the family, although there's some history.

we didn't have anyone to talk to, we didn't know anyone. And so I think that community that we were able to provide for him could have been helpful for us and we didn't even know it. Yeah. Yeah. Yeah. And I think, in that meeting, I could see how devastated he and his wife were. They're looking at their beautiful child that cannot function on her own. She had 15 episodes in 90 minutes. They are hovering over her every minute of the day, except for when she's sleeping.

And I think that's the scary part of some of these diagnoses. You get it and you wonder what has happened to the life I envisioned for my child. Where are they going to go? Are they going to need my care for the rest of their life? Are they going to become that productive adult that I thought they could be? So I'd love to hear actually your take on that. I think you have done a very good job of becoming a productive adult. I think you leave a very full and independent life. So I would love for you to, you know, kind of shine a little light on that and give people some hope.

as to what an epileptic can really become.

Yeah, time to brag about myself, I guess. well, where do I start? I think the first big independent thing I did was I moved out at 17. I feel like that's not something that a lot of people do in general, nevermind someone with the issues I had, which, you know, was great for me and living my full life and being independent. But

Jordan (18:55.31)

it was hard because when you're 17, you need like your parent to sign off for you going to the doctor sometimes. And so like the first doctors that I ever had, I did nothing with epilepsy. I had like a sinus infection or something like the one that everyone gets when they move and move into freshman dorms. But they had to like fax you a paper to sign fax back to say that I could get the care from them. But yeah, so moved out at 17 started college.

got a degree in philosophy. Then I got into a master's program for philosophy. I finished that at 23. And now I have I work in cybersecurity and I work at y'all way and I think I'm doing pretty good for myself. I live with my boyfriend but on my own in theory away from my family. I what like almost 3000 miles away from you. But I mean, we talk every day but

I feel like it's a double edged sword and here's why. I think it's amazing and people with epilepsy can live such full lives but there's also such a stigma around it. I recently, when I was last home and I went to the neurologist and my neurologist was on maternity leave so I couldn't see her but I could see her like nurses assistant or physician's assistant or whatever it was. And you know, we were having our normal conversation and I was...

She started asking me those questions about, like, are you in school? Blah, blah, blah. And I'm like, I just graduated. And she's like, oh, like, what did you get your bachelor's degree? And I'm like, oh, I actually just graduated my master's degree. And she's like, oh, what'd you do for work? And I told her. And it felt like all of a sudden she started paying more attention to me. And I feel like it's one of those things that's really hard because you hear it outside all the time of thinking that people with any neurological disorder in general, not even just epilepsy.

aren't capable of living those full lives or aren't smart is the one that we hear a lot which but then to see it in someone in the healthcare system perpetuating that stigma towards me felt it felt icky and it's I mean it's happened before but it's there are so many things you can do and I definitely when I was

Jordan (21:09.71)

15 and started having the worst seizures of my life and we hadn't had it controlled on medication. I definitely was in a place where I felt so uncertain about my future and I was scared for what was going to happen and we got under control and at the end of the day with something like this you do just have to take that leap of

Being able to go out and live your independent life and live your fullest life And I think that's I always think back to what austin said on his episode about There's only so much you can control about your epilepsy And so control what you can be healthy exercise take your meds do all those things but also Recognize that you still have a life to live and at the end of the day, you can't let your epilepsy stop that

that fear and that anxiety and I think it took me a Bit to get over that I got over it pretty quickly when I moved out and realized my life was going to be just fine but yes

Yeah. Well, and I think, you know, it's funny, two things I'm thinking as you're saying that you have one of those weird end of the year birthdays. So you meet the cutoff for school at just kind of a weird place versus other kids and boys in particular, it's, typically not a good idea to send a boy to school early. If they're right on the cutoff, it's usually better to send them later, just kind of the way boys, you know, mature and the way they interact at school. That's typically the rule of thumb.

So we get to kindergarten and you're four years old when you're eligible to start kindergarten. And first day we're finding six year old boys there because they've gone, you know, an extra year because of where their birthdays were and how they handled the cutoff. And we went in with the philosophy of, we'll see how she does. You can always do kindergarten twice. But it just, she's so ready to be out of preschool. She's so ready to be in a learning environment. She just seems smart enough for it. Let's see how it goes.

Mary (23:07.436)

and you were top of your class in kindergarten. So we said, well, she's going to first grade, you know, she's not repeating that year. You were top of your class in first grade. You were top of your class in second grade. It's never been a problem for you to be the smartest kid in the room. And, you know, you have an underdeveloped brain. So I just, think that's amazing and crazy and fantastic. And I don't know if you remember, but in your teen years, we had one of the neurologists that children say to us,

I'm surprised how smart she is with this type of brain, know, misdevelopment. It's amazing how smart she is, but I love that for you. And hopefully that gives other parents out there a little glimmer of hope too.

Yeah, and I think a part of it is taking everything with a grain of salt. Obviously that neurologist didn't necessarily believe before that someone with what I had going on could be that smart and that it was like miraculous and amazing that I was that smart, but I still was that smart. So it's never push yourself down and think you can't be that thing. And I think that again,

with the way you raised me to just have it as one facet of who I am, not being like the only thing you think of me as and there being bigger things that I think you would identify me with than just that. I think that that's really helpful and that's one of the keys to being able to say, let me go live that full life. Not everything everyone says is true. Again, in the same vein. So just so we can fact check this neurologist.

That neurologist also once told me that I needed to stop eating pizza and that if I lost weight that I would not have epilepsy anymore. So he was a little weird, I'm really smart. Interesting ideas.

Mary (24:57.026)

But I think the point is that's twice that the medical community were like, wait a minute, how can you do this with this diagnosis? So what do we expect the rest of the world to think of you when that's coming directly from the medical community? And I think you're right. It's just go live your best life. It's whatever they say, whatever they think, it's about you and what you do that's best for you.

And everyone's best lives look different for everyone. so my best life is what I've done with my life, but that doesn't have to be the exact thing that someone thinks is the best life for someone with epilepsy. And I think that's also really important to remember. Yep.

For sure. So what are you doing at Yahweh? What's next for you? Talk about your best life. What do you do for them? What's coming up? What are you excited about?

Well, for Yahweh, I write grants and try to get us money. And I also host this podcast. Those are my two job titles there. Right now, upcoming, we have our Monterey Walk for Epilepsy, which is on Sunday, October 20th, which is going to be a very cool event. We will put a link in the description to register if you're in the area. We also have the day before on the Saturday the 19th, we have a mental health symposium where we'll be having mental health

professionals discuss the intersections they've seen between epilepsy and mental health as well as the young adult panel that I'm going to be on which you can register for via zoom if you're not in Monterey so if

Jordan (26:26.868)

Not all of my friends are on Zoom, you're dead to me. You're not my real friend. And we also have a golf tournament coming up on October 21st, if you're in the area where you can golf or come to mocktail hour and bid on some really cool things, including a handmade sweater by you. That's what's upcoming. We're also hoping to expand our support groups. Right now, our support group is at 530 PST.

every Wednesday, but we're trying to expand it to make time zones that are more accessible for those on the east coast like me, because that's 8 30 and I really would like to be headed to bed by then. So we're working on expanding the accessibility of all of our workshops. Yes, that's what's coming up.

So depending on airtime for this podcast, if some of these events have gone by, are you going to have some streamed or recorded sessions that are streamed or make some of the workshops and things that people could look at later?

Yeah, so something that we're doing right now also is that we're creating a database of our workshops. anyone can visit our website and if they need resources from a specific workshop, they can go back and see those resources from before. I know that all of our events over the weekend will be recorded and there's still chances to donate and put your

money into our community because we are very small or self funded and I think we're bringing some really impactful resources. There's other nonprofits for young adults with epilepsy or children with epilepsy that have so much more manpower than us and still aren't providing what we can. So patting us on the back for really putting in the work. But we can only do that if we have the money to put in the work. So okay.

Mary (28:15.244)

And what else is coming? You mentioned maybe building some parental support, maybe expanding on some of those resource libraries, just in general, any hints as what's in the works over the next six to 12 months that you're hoping to expand in terms of options and services for people?

Yeah, so we're hoping to add well not hoping we are adding a parent support group. am sometime in the last bit of 2024. I'm not sure the exact month. I'm not sure if we even know that yet or if I'm allowed to share that sometime by the end of 2024. We will have that something else that we're doing that I think is super cool is that we actually are going to start having our content and have other offerings in Spanish, which is super

important because obviously that's a whole community that is left out by the language barrier and we really want to be accessible to all young adults and so that's something that we're currently working on that I think is really cool and provides more access to those that need it.

Yeah, I mean, we're in San Diego, all of Southern California, very heavy on Mexican influence and a lot of Spanish speaking here. And there's, I think across the country, there's a tremendous number of areas that are very similar to ours. So I think that's cool, very exciting. Great. Well, I think we covered a ton of ground all about you. So I'm going to give you a chance. Any questions for me before we go?

Yeah, what do you wish you knew coming into this? Like looking back onto my years of life and what you've done with me, what do you wish you had known?

Mary (29:57.208)

You know, I think two things immediately come to mind. One is what we talked about in community. Again, we didn't know what we didn't know. We didn't know anyone. didn't even, the internet existed when you were a kid, but not at the level it does today. It was a lot harder to find resources. And I think a community could have helped us and we didn't even know to seek it out. So I think if I had to do it all again, I would find more community, I think for sure.

There's just so many times where you question, as much as I think I've solved this problem correctly, as much as I think I'm doing the right thing for my kid, it'd be great to hear if someone else has ideas, other ways that they solve the same problem that I'm facing. And then I think the second thing is, it's just an interesting point about medication. The epileptic journey is a lot of medication.

not everyone's seizures are controlled by the same medicines. There's a lot of different medicines and different class types and chemical compositions that will react to different situations. And we kind of just trusted the neurologist to tell us the right one to use next. And I think, you know, over the years we discovered you got to read about the side effects. You got to read about the medicines. I'm not saying tell the neurologist, no, every time you recommend something. But you've had medicines that gave you hives.

You've had medicines that gave you sleep issues. You've had medicines that gave you kind of focus and mental acuity issues. For my brightest kid in the room, that's a little startling. We've had medicines that made you nauseous and sensitive to smells. know, so there, I think just truly understanding what you're up against with each medicine that you know what you're getting into and paying a bit more attention to what might happen. You had one medicine that basically stopped your body from being

from being able to dissipate heat. And we didn't realize that at first you'd been on the medicine for a while, but it wasn't summer, wasn't a real hot time of year. And we kind of headed into summer, we had gone on vacation, a family vacation to grandpa's house. And so you're out in the yard, you're playing with all the cousins, you're running around having a great time. You come in the house and I have never seen anyone that red. You were so overheated that you got in trouble. I thought you were up to some shenanigans. I didn't know what you were doing with the cousins.

Mary (32:13.394)

that brought you to that point and you you you were told to sit down and get a cold compress on you. But then after a few more of those episodes I was like what is happening here? And it was a friend of mine who I mentioned it to said what about the medicines she's on and I was and so I looked and sure enough that was one of the common side effects of that medicine you were on is that inability to let your body dissipate heat.

We live in Southern California. That's not a medicine that you can be on, right? That's a situation that could very quickly get out of control. We live in the desert. So we had to get you off that. So I think, you you can't be an innocent bystander to the medication. You do have to pay attention. It's a ton of work being a parent of a kid with epilepsy, but you know what? It's a ton of work being a parent. So you do the job, you take the responsibility. And I think paying attention to some of those things is helpful.

Getting into community helps you pay attention to those things. So I think it helps both sides, if that makes sense.

Yeah, and I think being the parent that pays attention to those things and does that helps the child do those things because my sleep issues and my nausea issues came much later when I was in my 20s and still in my 20s. That sounds weird to say when I was in my 20s, like a few years ago, but because I knew that you had advocated for that, I knew that there was that route for me and that that is something I should think about. didn't and it was for, I think, a while.

where I was sleeping like 12 to hours a night and I was still tired and I just kept dismissing it as my I'm working so hard I'm in college I have a job I'm doing all these things and then just like remembering those moments where I would get hives or where I was being yelled at by you for not being able to sweat it because you didn't know what's going on and just remembering that those things had happened made me as the child now feel empowered as a young adult to say okay let me

Jordan (34:13.518)

Ask these questions now. It's my turn. I'm capable of doing this. I've seen it be done before I know that I can't just be an innocent bystander to the medicine now So yeah, I think that also those habits and that community building you do as a parent really does affect your child with epilepsy and helps When you are a young adult with epilepsy get the tools you need to now take that

Jordan (34:42.552)

That's the word I'm looking for. To take that burden on for yourself that that parent previously had.

Yeah, yeah, you've got to transition it. We were the ones coming up with the ideas. Okay, she got kicked out of the middle of the driver's license process because she had that grand mal seizure. Let's get an Uber account set up for her. Let's put a monthly amount on there so she can still get places to be an independent teenager as she needs to, to and from school, hanging out with her girlfriends, going on a date, things that she can still do. And kind of teaching, it's back to teaching those tools.

teaching them to your children so that they can learn to take them forward and solve their problems as they move through.

Yeah, great advice.

Well, I appreciate your time today. guess I get to take off the podcast host hat and give it back to you at this point.

Jordan (35:32.682)

Yeah, thank you so much for joining me. I hope you have a wonderful day and obviously I love you so so much. Thank you for being the best mom on the planet, my favorite mom, obviously.

Well, you are welcome and I love you too.

Thank you for listening to today's podcast. more resources, visit youngadultoleplepsy.org and join our peer support groups every Wednesday at 5 30 PST or

support workshops. As I said earlier in the episode, we provide free workshops and resources for young adults with epilepsy, but we can't do it alone. So if you have the means to donate, help us keep the lights on and keep providing these crucial and vital resources that have changed the lives of so many young adults, please consider donating with the link in the bio.