Episode 73: Accommodations for School, College, and the Workforce - 504 and IEP plans

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions, and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:29 Jill (Host): Hello, fellow POTS patients and beloved people who care about POTS patients. I'm Jill Brook and today we have an episode of POTS Matters where we're going to discuss chronically ill students and school 504 plans and individualized education programs otherwise known as IEP’s. We have two wonderful guests today. The first is Dr. Cathy Pederson, who should need no introduction at this point. She's the reason this podcast exists, the reason this nonprofit exists, she's the reason we were just able to award a research grant to Dr. Satish Raj to do some exciting POTS research. She's also a neurobiology professor, POTS researcher, and POTS parent. Our 2nd guest today is Dr. Sally Brannon, who is a researcher and faculty member in the Education Department at Wittenberg University in Ohio. She is an expert in helping students with disabilities. Part of her work involves teaching teachers about the special learning and health needs of students with issues such as POTS and strategies and assistive devices to help support their education. Dr. Brannon has served on the editorial boards of several education journals. She has given presentations internationally and I could go on, but you get it. She's as expert as they come on this topic of helping students get a good education despite health issues. So, Dr. Pederson and Dr. Brannon, thank you so much for speaking with us today.

02:04 Dr. Pederson (Guest): Thank you, Jill.

02:05 Dr. Brannon (Guest): Thanks, Jill.

02:07 Jill (Host): So, my first question is really just about is chronic illness a very significant problem in our schools today? How prevalent is that?

02:21 Dr. Pederson (Guest): Yes, it really is a big problem. And I have to admit - you know you give me a very nice introduction as always, Jill I appreciate that - I have to admit that before my daughter entered the chronic illness community, I was really out of it. I just didn't know about any of this stuff at all. But it turns out that POTS, of course, I think our listeners know about 1% of teens is estimated to have POTS. But it's not just POTS. There are so many others of these chronic invisible illnesses that can actually start in school aged children. So, chronic fatigue syndrome and its big brother or sister - myalgic encephalomyelitis - is estimated in 1/2 percent to 2% of teens. Fibromyalgia in 2% to 6% of school children. And then the last one, my stat is a little different - Lyme disease - and 25% of all cases of Lyme disease are actually in school aged children. And so when you put this all together, they're a little different, each one comes with its own baggage, but we're talking about kids between the ages of 5 and 18 or 22, if we throw college in there, that may look perfectly fine on the outside, but on the inside, wow, they don't feel good, right? They've got all these struggles. Now, you know I like the literature. So, there was a paper that was published in 2002. It's an oldie but a goodie, and the leader author on that was Lisa Benrud Larson. And again, some of our regular listeners have probably heard me talk about this before because it is such a good paper, but she found that in kids with POTS, 25% of those teenagers are too sick to go to school regularly. So, think about that. We're talking about - high school kids or what, 14 to 18, something like that? My own daughter was 10 and by the time she was 12 we were really struggling. But they're too sick to be in school every day, and so there are a whole bunch of issues. I'm going to talk about a paper today written by Dr. Boris and many people in this community know Dr. Boris. They may have had their children seen by him. He was at CHOP [Children’s Hospital of Philadelphia]. He's got private practice now. But Dr. Boris is amazing, right? Everybody knows that. And he published a paper in 2018 talking about kids and school, and some of the things that we need to do to help kids be successful in school. Now, I think the paper is behind a paywall. I'll look into whether we can get this on the notes, or maybe it's just the abstract, but you know, again, he's citing the things that our listeners know: lightheadedness, headaches, pain, nausea, all this again, and kids that look fine. What's particularly difficult for students when they are being quizzed and tested regularly is that they often have trouble thinking. They have severe fatigue and they have cognitive dysfunction. We can call that several things. We can call that problems with attention. We can call that brain fog. But there... but there are issues. In fact, I just talked my own daughter down who is studying for a certification. She's in college right now and her brain is not working. And she is beside herself thinking, “Is this the career for me,” right? This is... this can be really disturbing for our kids. What's interesting about POTS in particular is we know that most kids that develop POTS are really high achieving, either in the classroom academically, on the field in their sport of choice, or both. And so these kids - and I know that's true for my own daughter - really wants to be in school. That's where she excels. That's where she can show off sort of what she can do. It was devastating for her when school was difficult for her to deal with.

06:54 Jill (Host): Yeah, and boy and interviewing so many POTS patients for the POTScast, I have learned that that does seem to be a stereotype. I'm kind of glad we can just say that out right now. The other thing stuck in my mind though, was the numbers that you just read off. Because I'm thinking about an average high school that has maybe 1,000 or 2,000 children. So, let's say 1000 to make it easy. So, if POTS is 1% of teens, that means that they might have 10 POTS patients. Fibromyalgia you said 2% to 6%, so that could be 20 to 60 in a school of 1,000. That blows me away, and I guess that's because it's all invisible. You don't know that you're looking at kids who have these issues, so this is a much bigger problem than I had realized. Dr. Brannon, how do parents go about getting accommodations for their child if their child has any of these issues?

00:800 Dr. Brannon (Guest): Sure, I think it's best if parents when they go to think about what accommodations are needed for their child who has POTS, or any student who has an invisible chronic illness, I think it's important that they begin at their child's school. Of course, your teacher is probably aware of the issues, and probably perhaps the more specific health issues, even if the child hasn't been diagnosed yet, what has been going on or leading up to a diagnosis in the months ahead of time. But I think it's best to start with the child teacher and he or she should be knowledgeable enough to steer you in the right direction. If the teacher seems to be unaware, or says that maybe nothing is available, then your next stop would be maybe at the school counselor's office, and I think in the case of a student who has POTS, I would certainly link in the school nurse. They would be the first three people who I would address. If you don't get pushed on to the next person who can really say yes, let's talk about a 504 plan or an individualized education plan – an IEP - for my student, then by all means go straight to your school administrator or school principal. Those individuals in your child’s school should then probably next send you onto the local school district offices and either to an individual who serves as the Director of Special Education, or perhaps some district school at the school services specialist. We talk more about having wrap around services in the schools. So, oftentimes we're stepping out of the role of just special education services, but the types of accessibility services and supports and accommodations that all students need. So, lots of times this individual happens to be called the school services specialist. So that's where I would start: definitely the home school and then out to the district offices.

09:52 Jill (Host): And at that point, do you have to have some sort of documentation, or is it enough to just say “my child has a hard time being upright” or something like that?

10:01 Dr. Brannon (Guest): Best place, and if I were a parent, I would certainly encourage a parent to please bring me some type of documentation from the doctor. It doesn't have to be specific. It has to be “this is what we're considering as a diagnosis or in the process of trying to get an answer, so here are some of the medical conditions or the medical outcomes that the student’s having - some of the symptomatic types of things that the child may be experiencing in his or her school day.” So I think, you know, just something that's simple that informs the district that the parent’s on this, that they're seeking medical attention, that they have found a physician who's working with them to get a diagnosis or who has already diagnosed their student.

10:43 Dr. Pederson (Guest): And if I can jump in there, too, you know, my daughter, Lily got sick when she was 10. And it was right at the end of 4th grade. And I think I've said on the podcast before, she made it to school, but on days where it was a field trip or something, she begged off. “Mom, please don't make me go,” right? And that's where the kids usually want to go. And so then we went into the summer and we were testing and doing all this stuff. Fifth grade was awful. And we didn't have a diagnosis for most of that year. And so, we did... she had a list of symptoms. The doctor knew something was wrong, but really didn't know what. We were driving, in our case the Cincinnati Children's, every couple of weeks seeing a different specialist, trying to get it figured out. So folks, I want our listeners to know that you can get a 504 before you have the actual diagnosis and that happened for my daughter. Now, we were lucky. Our school district was exceedingly gracious. And you know, I had been involved in the school. I think that probably helped. They knew me a little bit, and... and she wasn't a kindergartner, she was in 5th grade. But I think she went two hours – two periods - a day in 5th grade and they rotated in her school. She tried to hit each class once a week, and it was really tough time. But I do want people to know that when the symptoms are that complex, the doctor can, as Dr. Brannon Brandon said, write that note and say, “Look, clearly something is going on. I don't know what that is, but this kid needs help if she's going to make it or he's going to make it through this school year.”

12:33 Jill (Host): Oh, that's so good to know, given how long the diagnostic delay can be. So, that is a huge relief. OK, so let's say the parents are on board the teacher’s on board and you need some accommodations for your child to be able to thrive in school. What are the range of accommodations that might help students with POTS?

12:58 Dr. Pederson (Guest): Yeah, it turns out there are a wide range of possible accommodations. I'll put a link on our website because we do have a list of these on the website, so I'll put that in the show notes. But if the child is able to make it to school so they're in the classroom, there are some basic things that can be helpful. So, access to water and salty snacks. And you think about 5th grade, 6th grade - they're really strict about that. They don't want that. And then all the other kids want it but, but that's something that can really be helpful. Gum. Sometimes when my daughter gets brain foggy, just some peppermint gum or something can help her clear that head a little bit. Because they're drinking so much, they often need frequent bathroom breaks. But in in other cases, they're nauseous, so my own daughter doesn't have a lot of that, but if they feel nauseous or if they're having GI symptoms, they may just need to run to the bathroom without asking that teacher. So that could be part of a 504 or an IEP. If they flare, having some place set aside - maybe it's the nurses office, maybe it's a corner of the library, something like that - that's cool and quiet where they can sort of settle down, get that tachycardia back under control, put their feet up, and then go back to class when they feel like they're ready. And then they may just need extra time for homework and for testing. Again, that brain fog can be a huge symptom that people really can't see very well. So those are sort of general things. If they have mobility issues and my daughter did and I have to tell you folks, my daughter had almost every one of these accommodations. She's definitely at the medical disability end of things. She had a 504 and she had almost all of these. Her school had two floors, and so she did get an elevator pass so that she didn't have to climb up and down the stairs. For her, if she had to, she could go down the stairs, but going up the stairs with the backpack was a nonstarter for her. So that's something that you can ask for at the school. Our biggest problem was with PhysEd [physical education class]. So I know just in the POTS community, from talking to folks, some schools will allow that student to just be a student worker in the office that hour or something - they just give them the credit. Our school wouldn't allow that. And we went back and forth, we had doctors notes, we had physical therapists. My daughter was in physical therapy at the time. They wouldn't take it. We ended up doing essays instead of Physical Ed that hit the learning point. Sally can help me a little bit with the terminology here, but there are certain things that they were supposed to get out of this class. And so, we were writing about ballerina spinning. I mean, it was the craziest thing, OK?

16:04 Dr. Brannon (Guest): Cathy, I will jump in there and add a little bit. Certainly, every accommodation that you've stated thus far is very reasonable and easy to implement. You're right, the Physical Education requirement is a bit of a staunch one, and the reason she was writing as... I guess would have been to meet the learning outcomes and the learning standards that Ohio has, and every other state has them also. But I would actually think that districts should really be looking at adaptive P.E. that replaces... something that replaces the actual physical activity, because if she were seeing physical therapists at the time, they certainly could have written a program and provided that, or allow her to have a physical therapy or an occupational therapy session to replace the physical activity piece of it. And actually the outcome should be addressing both health and P.E., so her ability to learn about and handle her own symptoms would be certainly addressing the health standards that are addressed in Physical Education.

17:06 Dr. Pederson (Guest): Yeah, this was a tough one and they would not back down, I think for the reasons you said. There are certain things you have to learn. I don't see how playing kickball teaches the students any of these things, but I'm just saying. OK. [Laughs] So from a mobility standpoint, right, elevator pass, that physical education thing. Our guidance counselor was fantastic. And so, she would purposely put my child in classes that were next to each other. She would organize the day and then maybe she would walk to the neck... the other end of the building or have to go upstairs using the elevator pass and then everything would be up there. So, if you've got a guidance counselor or someone like that who's watching out for your kid, that made a world of difference, I think, for her. They also tried to have the classes near her locker. They didn't always assign her a locker where the rest of her class had it so that she didn't have to walk so far to get to that. And then one that my child did not have but I know is common for folks with POTS - for kids with POTS - is to let them leave a minute or two early from class to walk to the next one. My daughter, her legs often felt like there were elephants dragging behind her or cement blocks in her feet. But for others, there are balance issues, pain issues, sometimes a buddy system - they'll let a buddy walk with them - a little bit early. So that's another one so they don't feel that pressure, but also so they're not swept by that wave of students in the hallways. If we move on to, like, absences and sort of brain fog problems, and again we had these problems, too, extra time again for homework and testing. I think I mentioned that before, but it's so important, especially if they start missing school. And my daughter often at the end of the year, she'd be out for weeks at a time. Her little body just could not go anymore. Her spirit was strong, but her body was weak. And so that the teachers in the school were really great about giving us a set of books for home. And then she had another set of books that she could use at school. And so, if the flare happened over the weekend and then she can't get back to school, she can keep working. She can keep progressing with her class. So, that can be really helpful. Forgiveness for tardiness or absences. I had that school attendance office on speed dial. You know, they recognized my voice. I didn't even have to say, they’d say, “Oh, Lily is having a bad morning? OK.” So it's great if the schools can just be be kind about that. Lily and I - again, I think I've talked about this on the show before - went partial days of school since the first quarter of 7th grade. She... she never spent a full day at school. She's in college and she's still on reduced load. That can be really important for some of these kids that are on, again, that medical disability end of things. Now, there's a spectrum. There are other folks that can take a little midodrine and have their salt and water, and they're OK. But that's not everybody. For a lot of people, they're better in the afternoon than they are in the morning. So, if they can just do the core academics - they're in for science and for English, they're in for math, that sort of thing - and then skip the things that you don't need. My daughter ended up taking history and some of these other things actually online through a Community College to graduate from high school. So, sort of backwards from what most people think about. And Dr. Boris actually lays all of this out in that 2018 paper. And then the other thing that he said is if it looks like it's necessary, he supports 60 days of homebound education. That if that's necessary to help them with their physical therapy and to get their medications under control and their symptoms under control, that that can be a really good thing. So, you know, it's tough. Hard to know what's the right thing to do, 'cause they're also growing and developing, not only intellectually, but also socially during these times. And so, you don't want them to be out maybe too much.

21:28 Jill (Host): Right! Well, that was going to be my question because there's no clear definition, right, of when you should be in school and when you should just stay home and when you should try to push through the pain in order to get the benefits of an in-person experience. So, Dr. Brannon, I was wondering if you had any thoughts about that. What does a patient or a student lose out on if they say, “I'm just not feeling well enough to go to school today?” Is there a big price to be paid for staying home too often? Because I guess my question would be so, so I'm a POTS patient and I have, you know all of these issues. And I know what would go through my head if I were still in school today and I'd be saying, “Oh man, it's just so much effort just to shower and just to get dressed and just to commute. Is it really worth it? Can I just learn from home?” And I feel like, intellectually, I know there's benefits to being there in person, but could you talk about that from your point of view?

22:31 Dr. Brannon: Absolutely! Of course we know that we would prefer to have the student in the classroom and in most cases the student him or herself wants to be in that classroom. But we also know that we can learn through different modalities also, and that's where, when you work with the school district, it's their responsibility to make sure that your child is not losing ground. That's why we have 504 plans and IEP's in place. We want to make sure they're not losing ground. And we know students want that socialization piece, too. And if a child needs to stay home a few days in a row, 'cause I certainly don't want a child having additional concerns at school that might lead to an emergency situation that I have to handle or for the student to have more medical services later just because they pushed through and come to school. In this case, the health of the individual has to come first and foremost. Then we find out ways to supplement those other needs. We want to make sure that the learnings on track and of course teachers should be doing the data collection and making sure the students are making progress through the academic standards for his or her grade level. The other piece is: how do we then think about with mom and dad how to have those social interactions for the child? Is there a chance to have a FaceTime, a Zoom call, any kind of way that we can connect so they can have a conversation with maybe three or four of their good friends, like, “So, what took place at school today? What did I miss out on or what do I need to know?” You know, have them hear from other students what they learned in math class and what they talked about because we also know because of group work that takes place in school, those social conversations and kids hearing other students contextualize their own learning - it's helpful for themselves and hearing the explanation. So maybe they have a homework buddy that the teachers assign the homework to, but maybe there's an opportunity, “Hey on, you know, Tuesdays and Thursdays I've been out this week. I need to talk to my homework buddy. Let's talk through these problems together,” so they can hear another student explain it, because students use the same lingo, which is a little different sometimes than what we use as formal instruction. And I think that can be helpful. And it also is a way to keep that student also socially connected with his or her peers in the classroom.

24:45 Dr. Pederson (Guest): And that's one of the beauties of the pandemic, where when Lily was in 5th, 6th, 8th, 10th grade, we really didn't have those abilities. But we do have Zoom and FaceTime and all of these things now where they could even be included, maybe in the classroom sometimes, especially with an extended absence where they're really flaring and things are not good. And let me say from a parent's perspective, Jill, Lilly was such a trooper that when she said, “I cannot go to school today, mom,” the farthest I would push is to say, “Are you sure, dear? Are you sure you can't make it?” And if she said she couldn't, I called the school and that was that, right? Because this kid fought so hard for everything that she got and to be in school. And so I just had to trust that she knew, you know, what... what her limits were.

25:44 Jill (Host): So that's... yeah, I guess that's one bonus of most POTS patients seeming to be fairly conscientious and.... great. OK, so I guess the next question is how does a parent know if their child needs an IEP or a 504 plan?

26:17 Dr. Brannon (Guest): That's a good question, Jill, determining whether the child qualifies for an IEP or do they just need a 504 plan? So an IEP is actually linked to the Individuals with Disabilities Education Act (IDEA). And it is a plan that the student would have to qualify under certain eligibility criteria in the category. The most likely category for a student who has POTS would be “other health impairments.” It's a much more binding document. The school district also would get some additional funding if the child qualifies for an IEP. And it also allows for services to be much more detailed and has probably more strong data collection components to it. So I think that that always provides the most protection - an IEP does. But not everybody is going to qualify because one of the main components when one qualifies for an IEP or when they're eligible under one of the disability categories under IDEA is the fact that the child's educational progress within the general curriculum has to be impacted. In other words, it's obvious that the student’s losing ground. And that happens. I mean, when students have excessive absences because of their illness or when they need the extra time to do things, those are all very appropriate things to ask for, and this just makes it a little better for the student to be able to get all the services that he or she needs to make sure that they can stay on target for meeting grade level academic standards. But if the child is progressing fine anyhow and not losing items, I mean, I understand that based on the needs and the symptoms of POTS, sometimes people are going to miss multiple days in a row, or it's going to be a chronic time period when symptoms are more acute and problems are more detailed, but there are other times that things are going smoothly and that progress is happening and they're living as best of a close to normal life they can and can continue with the workload and the academic load and those kind of pieces. So, sometimes if someone doesn't qualify, the ultimate backup plan if someone doesn't qualify for an IEP, then they qualify for a section 504 plan. And a 504 comes out of the Vocational Rehab Act and it's there for students of school age, university ages, and is also there for people in the workplace to have. So if we have high schoolers who are getting employment, they can ask for accommodations in the work environment also because of Section 504 and because of the Americans with Disabilities Act.

28:55 Jill (Host): Is this like a form you fill out or how do you go about like actually taking that first practical step to doing it?

29:02 Dr. Brannon (Guest): This practical step is the first one I gave and how do I start to get my child services: Talk to your child teacher, the school counselor, the school nurse, and more than likely the school building administrator. These are the people who really know best as to how to get this child qualified or eligible for IDEA and therefore an individualized education plan. And they also would let that process begins. And if the student isn't eligible, then they're definitely going to be eligible for a 504 plan just because of the chronic health problems that exist. Absolutely. Like I said, the IEP plan - the student has to be underperforming or struggling to perform at grade level and maintain consistent progress during the school year. With the 504 plan that's not mandated, it's the health components that would drive it a bit more.

29:57 Jill (Host): OK. So, Dr. Pederson, I'm wondering from your experience, how far does this get you? You know, we're so used to the POTS solutions never being 100% effective. So is this enough? What does this address, what does this not address?

30:18 Dr. Pederson (Guest): Yeah, a 504 is really a godsend, and I agree with you so much of dealing with POTS is cobbling things together just enough. And we were also lucky because our school system was incredibly supportive. We didn't have anybody ever say “No.” I wrote to my daughter's principal when she was in fifth grade and I said, “She's really light sensitive. Please put my daughter in the darkest corner or allow her to wear a baseball cap or sunglasses.” And do you know, some teachers for the entire class, they shut off the lights when Lily walked in the room – it's those fluorescent lights like in the store that bother lots of POTSies, right? Some let her wear sunglasses, some did stick her in the darkest corner of the room. But... but there are weird things that come up and I'm sure I could come up with more examples. Our listeners probably have weird things that really bother their child. And when we had that 504 in place, anything like that, folks were happy to do. They really wanted her to stay in school. That's what it came down to, and she would get such headaches and... and things when the lights were going. Partial days really saved my daughter. And as crazy as it sounds, and I mentioned it just a couple minutes ago, but let me be sure our listeners understand that. My daughter went to college online to finish high school, to get enough credits that she could graduate with her high school class. Because remember what I said, she only went to two or three periods a day for years on end. So, to get enough credits to graduate from high school, she took these online college courses. And that was a wonderful accommodation for her. And let me say one more thing: at one point we thought about doing a GED - the equivalency exam. That's how unsure we were that we could get her through high school. And I am really happy to say not only did she graduate, she was first in the class, despite all of this. And she graduated with her class, which is what she wanted above all else. So, it is possible. It's difficult, but it is possible to make this happen.

32:50 Dr. Brannon (Guest): But Kathy, I just want to add in there and say that, I mean, the 504 is a excellent godsend, as you said. The IEP holds a little more power and can actually hold the school district a little more accountable for making sure that the student graduates with his or her class and gets their courses no matter how they need them or where they need them. I think that's a piece that maybe we didn't touch on yet is the “where” - the at home. You mentioned that your daughter needed, you know, 60 days at home homebound instruction. That's definitely affordable and doable through the 504 plan. The IEP would guarantee that and would pretty have a teacher being able to provide that in the home or the appropriate teachers coming, too. They would literally be sending a substitute to provide the day's worth of instruction. So like you say, don't take the first answer is no. You were lucky to have a school district who was very reasonable and willing to work with you. Unfortunately, that doesn't always happen, and I would encourage people to, like, not give up and reach out to somebody here that you've listened to on the podcast and ask how we can help you, too, if you're finding it district that's not being quite as agreeable as that what you were lucky enough to have to work with.

34:03 Dr. Pederson (Guest): And I’ll say we did have teachers come to the home. Her 5th grade teacher went around and got the homework from everyone. She came once a week. She sat with Lily at Lily’s [inaudible], tsat with her for an hour or two and sort of said zip zip zip, this is what we need to do. But there were times where Lily just blew it. She was brain foggy. She was trying her best to get her homework done on time and turned back in, and the teacher told me at the end of the year, she said, “Sometimes she didn't get a single answer right. And I just gave it to her again, and then she aced it.” You know, so that brain fog day-to-day could really be an issue sometimes for people. But yes, there are all sorts of accommodations, and having a teacher come to the home is definitely one of those that can happen.

34:54 Jill (Host): So, one thing that I'm hearing is that you clearly and Lily clearly put in tons of effort to do your best, and that that probably encouraged other people to put in the effort also to help. Now, let me ask quickly about the college classes. Is that something Dr. Brannon when you were saying might be provided, but because that's not always free, right? There could be cost involved with that? Or how would that work if somebody needed some college courses?

35:25 Dr. Brannon (Guest): Sure. If a student needs courses and they are... they have to still be eligible to get the courses at the university level, either through their local Community College or with a local university. Most all school districts have some type of an agreement anyhow because of AP or Advanced Placement classes, and here in Ohio we have what we call “college credit plus.” Most other states in the United States have these options too. So, local school districts have ways to tap into appropriate courses for their students to be able to finish. And if the student doesn't meet the academic standards required by the local university or Community College, then the district provides that. That's where it guarantees that that student gets the education that they need in his or her least restrictive environment.

36:15 Jill (Host): So Dr. Pederson, what issues might your child still face once they've done all this stuff?

36:21 Dr. Pederson (Guest): Yeah, I think there are a number of things, right? One that we keep coming back to is that POTS is invisible. Someone else can't tell by looking at my child or someone looking at your child and know that they are ill. In fact, sometimes when you meet families where you know someone has POTS, like at our 5K, you can't tell by looking. Now we have different T shirts, so you can tell by the t-shirt, who has POTS. But you really can't tell when they're coming to registration who has POTS and who doesn't. And so that makes it harder because the teachers can look and say, you know, they look fine. In my daughter's case, she talked about putting on a mask. I don't know, Jill, if you think of it that way. You've talked about changing the voice and that sort of thing, but for Lily, she really thinks about putting on this mask. She smiles, she gives every ounce of energy that she can to look as normal as she can while she's there and to hide the extent of her illness. And then we'd pick her up after two or three hours and she was so exhausted she couldn't hold her head up. She would literally prop her head against the back of the seat and the window for the ride home. So, that can be very difficult. I think another thing is that, you know, the symptoms vary a lot. So again, we've talked about this before that, my daughter Lilly and Jill have both have POTS, but sort of have opposite symptoms where you are on the move all the time and need to be on the move and she has tremendous fatigue. And stamina is a real issue for my daughter. So, if you know someone with POTS, that doesn't mean that you know what POTS is for everybody, because there's so much variability. But the other thing is that it varies day to day. So, one day you could have a great day. We're actually having storms. I don't know if this is going to come through on the tape by the time we edit it, but this is terrible weather for my daughter. She does not think well when the pressure changes are like that when it's cloudy, when it's stormy. Awful for her. And then, you know, when she'd been out for a couple of weeks, everyone would sort of turn their head when she walked back into the classroom. So feeling maybe like they're on the outside a little bit, even with their own teachers and with their own class, they don't get the inside jokes. They don't know what happened at the football game on Friday night, 'cause they're lucky if they made it to school on Friday. There are a lot of issues.

39:13 Jill (Host): Is there anything that parents or students can do to help teachers or classmates understand POTS better?

39:122 Dr. Pederson (Guest): I always took a packet at the beginning of school. I always took a packet to the teacher that I left with them. So we often had parent teacher conferences right before school started. And Lily and Kate did this My Life With POTS book, so I would include that. But I also had some of our own materials from Standing Up to POTS, so we have things that you can give to the school nurse. We have “Just What Is POTS.” You know, we have a list of common accommodations for schools and I printed all of that, and I had it in a folder and I would hand it to each teacher. They may not have time to digest it at that moment 'cause there are so many parents coming through in those conferences. But that at least gave them something to look at before school started. I think that was actually really helpful. If they need medication at school, meeting with that nurse, maybe at that same time before school starts. My daughter needed that for a long time. She had to go in at lunchtime and take medications and she hated it. [Laughs] She hated it because it made her feel different from everyone else. But it was important for her to get those medications during the school day. And so you'd need to be sure that you're supplying the nurse with everything that they need, that they know what POTS is. I think with the pandemic a lot more folks are becoming aware of POTS, but there are still issues there. Sally, what other things could we do?

40:55 Dr. Brannon (Guest): I definitely want to make sure we talk about the idea of a parent writing a letter to the child teacher, and explaining this is what them, as the parent, what they see happening with their child and also to ask the child to put his or her words in it too. Like, what is it you want me to tell your teacher? That way the child knows the letter’s going to the teacher also. And I think a second letter or conversation is to ask the child or the individual who has POTS, “What is it you want me to share with your friends? What is it you want us to tell your friends that what POTS feels like to you or what this does to your body, how it makes your thinking fuzzy, what it does to your energy?” And have them put it in the words so that way they're comfortable and they know, like, this is something I can share with my class. Better yet, have them, maybe even videotape something, or give a little presentation on POTS. I mean, especially if they're old enough to do that, I think that's a great thing to do. It actually teaches the individual to be an advocate for him or herself. It lets them put their issues that they're having in his or her own words related to POTS and what's going on there. I think that can be helpful. And I believe I heard Cathy say that there is plenty of literature out there to be shared. One of the things that I actually encourage teachers to do when they're working with any type of undiagnosed disability or chronic health problem is to share books and stories with their classroom as they might be age appropriate and there happens to be one out there on POTS. It's My Life With POTS, and it's written by Lilly, and of course illustrated by her sister Kate. So I think it's a great resource. My students here in my college classes at Wittenberg actually read this book, and I use it as my introduction for when I talk about other health impairments and what it means for a student to have a chronic or an acute health issue and why that is a category because we talk about how chronic issues actually can impact one's education and learning, too, that it doesn't have to be a cognitive issue or a social issue, it's the health issue, and the physiological results of it that can also make the learning a struggle or a challenge for the student.

43:09 Jill (Host): Yeah, so it sounds like a lot of work, a lot of effort to educate the people around you, but it sounds really useful because I think that's what most of us end up having to do the rest of our lives, anyway, so you might as well, learn young how to start doing some of that. These are great ideas. Do you have any more advice or words of wisdom to parents or students about any of this?

43:34 Dr. Brannon (Guest): I think the first piece of wisdom that I would want to give is if you're told “No,” don't stop at one No, keep going. It's been frustrating for you as a family to care for your individual and even get a diagnosis mostly when the case of POTS, but I think it's really important, like, don't take No. You didn't stop at the first physician who didn't give you the correct answer or an immediate answer. Keep asking. And reach out if you need assistance. I think the other one is to make like, don't give up on that 504 plan too quickly, like, and say, Oh my child is doing OK now, I don't need it. Keep it in place for as long as the school district will allow you to have the 504 plan. And in the case of an IEP, it's reviewed on an annual basis, so you'll revisit it all the time. So I think that those are important things to do is to make sure that those once you get them, keep them updated. Remind everybody what they need and if there's been changes, you have the right to ask for those changes that are necessary to help your son or daughter be successful.

44:36 Dr. Pederson (Guest): Yeah, we had 504 meetings every year and we had to turn in a letter from the doctor every year. Now, truth be told, I wrote the letter. [Laughs] Jill knows. yeah, I wrote the letter and asked the doctor to sign it. They were welcome to make changes if they wanted to, but usually they were happy that that I had done that for them. But it was really helpful for us going to college. So, my daughter has had a 504 literally since 5th grade, but when we went to college it was so easy. So I want to be sure that our students know that they can carry that on. And so when we showed the 504 plan from the high school and then again, we always had to have an annual letter from the physician anyway outlining the accommodations that were necessary and that was easily done. And so in our case she needed a dorm that was air conditioned. She needed a dorm that was close to the food. Again, think about minimizing steps. She has security pick her up to take her to class and home from class, because, again, stamina’s an issue. Wittenberg is a beautiful campus but it happens to be on a hill, and so when stamina is an issue that can be a problem. Now we know Jill would climb that hill and then go down it backwards. We know that from previous episodes of the POTScast. [Laughter]

46:04 Jill (Host): [Laughs] Do what you gotta do.

46:05 Dr. Pederson (Guest): Right, but Lily, that is a nonstarter for her at all. And then again, she can also have extended time for quizzes and homework and absences, all the things that she had in high school. So I agree with Dr. Brannon, it's really important to keep that and don't be afraid to go in and ask for that in the disability office at your college as well, and because you should be able to get that. That should be available to students.

46:35 Dr. Brannon (Guest): It definitely should be a collaborative effort between the student, or even if it's a young student in an elementary school classroom or a college student, the family, and then those who are providing the educational services. I mean, it is all about collaboration and getting a team together to support the individual.

46:56 Dr. Pederson (Guest): And I guess my last thought would be just don't give up and I think Dr. Brannon said that a few minutes ago, but these kids are so precious and they have so much to give the world. We've got to figure out how to educate them in a way that works for them. We know they're high achieving. We know that they're conscientious. We know that they want to be in school, but it's not always possible, right? So fight for those kids. And I agree with Dr. Brannon, just like you fought for that diagnosis, or at least many of us did, fight for what they need in the in the school. Find an ally if you can. Our kids are worth it, right? They are worth the time and the energy. And I'll tell you the truth, our kids are watching what we do, parents, and they see whether we're fighting for them. We may not always win. We may not always get things the way we would like them for our children, but they see us. And that struggle for them. And I think that means a lot, whether a teenager is ready to tell you that or not.

48:03 Jill (Host): These are beautiful and empowering sentiments. Thank you so much. I had no idea that all this was available. I had no idea that professors of education were on the patients' side and feeling like the school districts owe us this. So this is just so encouraging to me to hear all of this. I cannot thank you enough for your compassion and your expertise and your time today. And so... so thank you. Thanks so much!

48:43 Dr. Pederson (Guest): Thanks for having us.

48:44 Dr. Brannon (Guest): Thanks for the opportunity.

48:47 Jill (Host): And hey listeners, that's all for today. We hope you enjoyed today's conversation. We'll be back next week. In the meantime, thank you for listening. Remember, you're not alone. And please join us again soon.

49:01 Announcer: As a reminder, anything you hear on this podcast is not medical advice. Consult your healthcare team about what's right for you. This show is a production of Standing Up to POTS, which is a 501(c)(3) nonprofit organization. You can send us feedback or make a tax-deductible donation at www.standinguptopots.org. You can also engage with us on social media at the handle @standinguptopots. If you like what you heard today, please consider subscribing to our podcast and sharing it with your friends and family. You can find us wherever you get your podcasts or at www.thepotscastcom. Thanks for listening. © 2022 Standing Up to POTS. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org]