Amy Gleason is Morgan Gleason’s mom. We discussed parenting style, cues for calibrating autonomy, the importance of parent support groups, managing depression, self-care, and advocacy by transitioning young adults. Welcome to this sixth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.
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Previously in series (newest on top)
Interoperability is the ability of different information systems, devices or applications to connect, in a coordinated manner, within and across organizational boundaries to access, exchange and cooperatively use data amongst stakeholders, with the goal of optimizing the health of individuals and populations.
Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer
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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Introducing Amy Gleason
Amy: You go through this mourning process of what you thought your life was going to be like and how your kid was going to have all these opportunities and then you have to watch them every day suffer. And you have to be the one giving them shots and forcing them to take pills. And oh no, they can’t do this. It’s hard as a parent.
Health Hats: Amy Gleason and I know each other through the Society of Participatory Medicine. Amy is an expert in health data and health technology. She is an entrepreneur and a mom. I interviewed her daughter, Morgan, in the previous episode of Health Hats, the Podcast. I learned quite a bit during our conversation. We discussed parenting style, cues for calibrating autonomy, the importance of parent support groups, managing depression, self-care, and advocacy by transitioning young adults. Here’s my conversation with Amy Gleason.
Amy tell me a little about yourself.
Amy: I have spent most of my career working in healthcare, mainly in healthcare technology. I work mainly with electronic medical records and Practice Management systems for both the provider and the healthcare system. I’ve tried to get interoperability working and data sharing between providers and patients through the physicians and I’ve tried it from the patient side. I co-founded a company called CareSync after my daughter was diagnosed.
Health Hats: CareSync. I know that.
Amy: I’ve worked at it from the patient side. And now I’m working at the U.S. Digital Service working at interoperability from the government side.
Health is fragile 02:34
Health Hats: Where were you the first time you realized health was fragile?
Amy: It’s a hard question. I think the first time was when my grandmother had a stroke and she had surgery and they really didn’t have a good solution for her. They just sewed her back up and left her to live out the rest of her life in a nursing home. It was very scary as a child to see somebody you love and that situation. Sometimes we would come to visit her and she didn’t know who we were. Other times she did and that was a lot for a child to take in. I guess that’s the first time I really realized how fragile health is.
Health Hats: Thank you. What does healthy look like to you?
Amy: Healthy to me would mean that you’re able to live life to your fullest.
Parenting, independence, making mistakes 03:29
Health Hats: You know that I’ve spoken to Morgan twice. She helped me conceptualize this project I’m on and then I interviewed her. She’s impressive.
Amy: Thank you. I’m proud of her.
Health Hats: Yeah, lots of be proud of. It seems like you’ve been pretty deliberate in guiding Morgan to independence and adulthood. So, can you tell me a little bit about that process for you as her mother?
Amy: Yes, from a healthcare perspective or just in general?
Health Hats: Start with in general.
Amy: My father always said that he believes the job of a parent is to let your child make all kinds of mistakes. And as soon as you see them getting too far, then they kind of grab you back in. And I always thought that was a really good way to look at parenting and to not be a hovering parent but to also make sure they don’t get into too much trouble.
I tried to do the same. I think I took a little bit different approach than some of my friends with their kids and was a little more open to letting her try things and experience life. I tried to get out and encourage her. While we were doing things, explaining – “This is why you have to do this as an adult. This is why I’m doing this.” So that she could understand as she went along. I remember being in college and asking, “Why do you have to do this?” So, I tried to explain a lot more as we went along, help encourage that, and encourage that. Of course, Morgan’s journey is a little different because she was diagnosed with a rare disease and she was 11. She had to grow up a lot faster than your average 11-year-old. Had a lot more responsibilities to worry about taking care of herself. She couldn’t just go spend the night with a friend. She had to spend the night with 21 medication she takes every day and she had to watch out for symptoms, and she had to tell them she was doing too much and all that stuff. So, parenting her was a little different. I was always very deliberate about trying to help her learn how to go through the healthcare system. I’ve seen too many times you go into the office visit and you leave and you’re on your way home and your forgot to ask about this or “I didn’t really get a good answer to that or I’m not really sure what I’m supposed to do next.” And so, we would practice on the way to the visit. Her main doctor was about 45 minutes away. We had a 45-minute car ride every time. I would get her to say, “What are your goals out of this visit? What is it you want to accomplish?” When you have a chronic disease it’s hard to explain what’s happened to you in the last month or the last three months. Because all you can really remember is yesterday and it’s all kind of variable. So, I’d get her to remember last week “when you were having this. Think back before this week. How are you feeling? Remember when you were frustrated because you couldn’t do whatever?” It helped her recall that stuff and make an agenda for what she wanted out of the visit and to make sure when they said, how are you doing? She didn’t just say ‘fine’, but she actually could give a good answer. I knew at some point; she would want to leave and go away and live her adult life and she needed to be ready for that.
Cues for calibrating autonomy 07:08
Health Hats: What cues were you seeing or looking for as you were calibrating this autonomy and Independence? Correct me if I’m wrong, but I’m figuring at 11, it’s like oh shit, what is this? For everybody, for the whole family. And then there’s a period of you kind of got a sense and you’re starting to think beyond the next day and the next symptom and the next appointment. As you got past that initial shock and adjustment and you started thinking a little bit bigger. You are starting to think of another week, another month. She’s getting older, another year. What were the cues you were looking for or seeing that helped you calibrate?
Amy: That’s a good question. I should say that in the beginning, I was certainly not worrying about transitioning her to anything. She was very sick when she was diagnosed. She couldn’t stand up off the floor. She couldn’t walk up the stairs. So, I didn’t really let her do anything in the beginning. I was just a mom and I drove all of it. I kept the symptom history. I took over at the doctor’s office and I would ask her, “Hey, do you have anything to add, Morgan?” To pull her in that way. But she also didn’t really have a lot of interest in talking to the doctors at that point. She just didn’t feel good. I think there’s a point where they’re ready to do that kind of stuff. So, for Morgan, she got irritated when they would talk to me instead of her at some point.
Health Hats: And that was a good sign. Oh, yeah.
Amy: Okay at the next visit you talk and I’m not going to talk unless I have something to correct or interject. Otherwise, it’s all you and so she would start off and then she would say, “Hey Mom, is this right?” Or whatever and so we kind of did it together. But after a while she just took over and I really just sat and listened.
Health Hats: Okay.
Amy: I think the other thing is as she got older and she could drive – 16. She would pick up her prescriptions at the pharmacy and get through all that. We’ve got the pharmacy app on her phone so she could track her own prescriptions and refills and see all of that stuff. So, I think just kind of over time we added in little things. She didn’t really make a lot of appointments before she went to school. But she was involved in the process. We would talk about it and she would hear me making them. But she didn’t really want to call them to make them. So, she would just give that job to me. When she got to college, she had to learn on her own to call and figure out how to make appointments. She was frustrated in the beginning. It’s not the easiest process, as you know. Then from a payment perspective, I’ve tried to help her understand how it works. But because she’s still on our insurance and I pay most of her bills. I don’t know that that part’s totally transitioned. We talked about it in January. ”Deductibles have just reset. When you go, they might ask you for a larger payment. Be prepared. Call me if you need me.” So, she’s kind of learned that way but she certainly isn’t like totally understanding all that part yet, right.
Lifeline – Cure JM parent support group 10:42
Health Hats: You’ve been involved in healthcare and technology in your career. You and I were different because we were not the norm with experience – a lifetime of experience with various parts of the healthcare system. When you look at what you’ve had to deal with, what has been helpful or what would have been helpful to you? Either just knowing all you know, but then putting yourself in the place of the people you advocate for in your day-to-day life.
Amy: Right, so interestingly enough. I hadn’t lived in the Tampa area very long when Morgan was diagnosed. Unlike most of my career, I hadn’t have a network of people I knew in healthcare. If I needed a doctor, I could just find out who to go to. In Florida I didn’t have that kind of network. So, in some ways I was kind of just like everyone else and that was a hard process to figure out. How to find out which hospital even go to much less which doctor. Now with her rare disease there was only one pediatric rheumatologist. So that was pretty easy. But the rest of the doctors it was kind of hard to figure out how to find the best ones. I’m very involved with the parent group with the Cure JM foundation for other kids, other parents of kids like Morgan.
Health Hats: Say again with the name of it.
Amy: The Cure JM (Juvenile Myositis) Foundation. The parents of that group really helped me a tremendous amount. The day Morgan was diagnosed I was Googling and it’s a very rare disease and I found a parent message board. Morgan was supposed to be going to camp away in a different state. Spend the night at camp in three days? I was like, what do I do? Of course, she wanted to go. So, I posted on this message board. I think it was like 6 o’clock at night and a mom commented within an hour, “hey, what’s your phone number? I’ll call you.” So, she calls, “get a piece of paper” and she just rattled off all this information and I just wrote it all down. Then I said, “well we can’t get an appointment with a doctor for three months because there’s only one in this area.” And she said, “oh there’s an expert in this disease. Here’s her phone number. Here’s our email address. If you email her, she’ll probably email you the same day.” It’s Friday at 8 o’clock at night or something and I email her thinking I’m never going to get an answer and she actually answered me within the hour and said, “I’ll see you in July. Here’s the date and time. She can go to camp. These are the precautions to give to the nurse and go get her if these things happen.”
Health Hats: Wow,
Amy: It was incredible. I learned very early on that this parent group was my lifeline. They teach you all the things the doctors don’t know and don’t have time because they don’t live with the disease. How to deal with school and education and how to get you know enough accommodations in place that they can go to school or if they can’t go to school how to get home school. How to deal with sports when they want to play sports. How do you figure that out? Can you do it some way? So, they had suggestions Morgan didn’t play baseball, but some of the kids do and they had ideas on how they can be involved in the team but not play baseball. For kids, their whole support network is their friends if you play a sport. Morgan was a gymnast and cheerleader and when she got sick, she kind of lost that whole group of friends, which was really her whole identity. You know that parent group also encouraged us to find a new group somehow and Morgan ended up riding horses. And that was a whole new group. She could ride a horse because she could sit on the horse and it did a lot of the work until she could get stronger. But she got a friend group that she could relate to and do things with and so they’re really encouraged how to live life, not so much the medical. We ask each other questions all the time. Does your kid have this is or it just normal? Have you tried that? I would encourage people to find a parent community or forum or any kind of patient community. Morgan now has a young adult’s group with that same organization, and she uses that a lot.
Transition issues – hot topic 15:11
Health Hats: What’s the chatter in that group about this young adult to adult transition? What are the issues that come up there?
Amy: I think the biggest one is in high school as you start to think about college. That’s what stresses most parents out or whatever their next transition is if it’s not college. When they want to move out of the house that seems to be when the alarm bells go off and parents start going, my child wants to go six hours away. What do I do? or I don’t think they can move out of my house and don’t think they’re well enough, what do I do? Morgan went seven hours away from home in a rural town. I really wanted her to go somewhere where there’s a big academic Medical Center. She went to a small rural town in Auburn, Alabama. Yeah, and I was nervous about it, but it’s worked out great. It’s been fantastic there and she just figured it out. So, I now share that story with all the parents that are worried and say these are all the things that we did. We made an appointment with a doctor before she went. We did all these things and accommodations at the school. We set it all up ahead of time. And so now that’s kind of a pathway for all these other parents that have the same issue. I’m going to be talking at our annual conference about transitions a lot. That’s one of the hot topics and we usually have a nurse come and talk about how they suggest you transition from the medical side. And then we have parents talk about how we help our kids transition and then we usually have one of the young adults like Morgan talk about what it was like for them. So, I think sharing information is the best way.
Depression, unhappiness, mourning 16:47
Health Hats: Morgan seems so centered in her life and I don’t know that that’s usual or unusual. We all had our young adult to adult transitions where we were successful at things and unsuccessful at others and we lived through them. I have MS and one of the things that I’ve seen in the multiple sclerosis community is there’s a lot of depression. I’m sort of hesitant sometimes to get involved in the MS Community because it’s so strong – the depression. My way of dealing with that is I avoid it just because I’m pathologically optimistic. It works for me and I don’t want to mess with it. I wasn’t diagnosed until I was an adult. But as a teenager, life is so up and down, and everything seems so dramatic. Do you have a sense from your own experience and being with this support group that you’re part of is that another big issue people dealing with their unhappiness?
Amy: I definitely think not just from the kids. The parents also go through quite a lot. I think sometimes it may be worse than the kids stage with the parents than with the kids because you go through this mourning process of what you thought your life was going to be like and how your kid was going to have all these opportunities and then you have to watch them every day suffer. And you have to be the one giving them shots and forcing them to take pills. And oh no, they can’t do this. It’s hard as a parent.
Not that it’s not hard for the kid. Of course, it is. Morgan was 11 so she was a little older. But sometimes these kids are one or two and they don’t really know. They don’t have any other thing to compare it to, but the parents really struggle. Yeah, and so we definitely talked a lot about that at the parent group about how to keep yourself positive and to set a positive tone for your child because they follow you. Also, you’re the parent. But especially teenagers and younger, too. It’s definitely a hot topic – depression. A lot of the kids take steroids and they get the big weight gain and the big moon face. Morgan was going to seventh grade when she was diagnosed. In the summer of seventh grade. So, she was 68 pounds when she was diagnosed in June. She started school in August, and she was 98 pounds. It’s a big change for a child. Yes and I hope she’s not mad at me for saying this but every for a while every Monday, she would go to get dressed for school and she didn’t fit her clothes and we’d have to go buy new clothes on the way to school and that was hard. I mean it was really hard. Yeah. Thankfully, Morgan had some really good friends. She had two really good friends and in that Middle School period that just stuck by her and she had some amazing teachers who would FaceTime her while she was in the hospital. So, she felt part of the class and I think all those people gave her a little boost to her confidence to kind of help her keep going. But it was hard. I think dealing with the mental health aspects of illness is very important. They shouldn’t be minimized. They should be addressed and try to help. It’s a normal thing. I think it shouldn’t be a stigma. I think people are worried about all of that. I think the parents worry some about the young adult and teen groups that maybe they might have negative energy sometimes without parents there to interfere. But just like you’re very positive and I’m positive there are kids that are very positive and they kind of combat that side of it in the group, from what I understood from Morgan. I think you have to be real and call people out and say look if you need help to get help. But you can’t bring me down all the time. I need help too and just have a real conversation about it.
Where have you been? Transition experiences 21:22
Health Hats: I was talking to another mother last week and one of the things that she said that drove her a little crazy with doctors in the transitions was that her experience of life was it was one transition after another. There was a six-year-old transition. There was a ten-year-old transition. I’m putting words in her mouth. She felt like the system dealt with her as there was one transition. Like off and then the new was on. It was jumping over a big chasm to the new. When in reality life was these little transitions forward, back, forward, back, forward, back. It just drove her crazy
Amy: I didn’t have that experience. I think probably because Morgan was older when she was diagnosed. But I have a sense of what you’re saying. It seemed like the doctors and the nurses would talk to me all the time and not to Morgan and that would drive her crazy. But then all of a sudden, they were, well you must transition, and you need to get ready for this and da de da. Where have you been for the last two years? So, I can see a sense of that. She was going to college we had made a plan and I thought it was a pretty good plan. One of her doctors was just kind of like that’s the dumbest plan I’ve ever heard of. Okay. Well, where have you been? You know, we’ve been talking about this every visit for the past two years. So, I can see that to some degree
Health Hats: I want to ask more about you. You’ve been talking about this community and how that’s been very supportive of you. So how have you taken care of yourself in all of this?
Amy: I think that’s probably the hardest part of being a caregiver is to worry so much about other people that you don’t take care of yourself. Of course, during all this period I had a company that I had co-founded. Had other family members. My mother got cancer and my husband like we just have had a lot of issues. So yeah, it’s hard to take time and you know, take care of yourself. Yeah, I think Morgan and I have gotten to the place where If I’m with her and I need a break, I just say I’m going to step out for a little bit. I’ll be back. And she doesn’t get her feelings hurt. The same, she’ll say, ‘I need you to leave.’ And I’ll leave her a little bit and come back. And so, I think I think over time I’ve kind of started to figure that out a little better, but I certainly didn’t figure it out and probably still haven’t it very well. It’s a challenge.
Health Hats: It is a challenge.
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Children’s hospital experience for teens 24:54
Amy: One other thing I did want to say earlier that I just remembered. One thing that was really hard as Morgan went to a children’s hospital all the way until she went to college. When you get to be 15, 16 years of age, children hospitals are really not geared towards that age anymore. They still wanted to bring around the children’s games to play. The graphics on the TV stuff are all very childlike. And they talk to you like you’re a child. I think that’s a big missed opportunity for health systems and providers at that age range to stop talking to them like they’re five-years-old and talk to them like a teenager. Morgan had one doctor that was extremely good at that. He would come in and say, not “how are you feeling? What’s going on and whatever?” But “tell me about what’s going on in your life?” And she developed a relationship with him where she would tell him a lot more things because he was interested in her personally not her rash, her weakness and her whatever. So, I think that’s a big opportunity, especially in children’s hospitals.
Advocacy and clinical research for and about your kid 26:04
Health Hats: That’s good. So, we’ve been talking mostly about you and Morgan and what you’re dealing with. But here you are, a person who’s an advocate and understands more about the systems and context of having health challenges. So, if you’re thinking about policy and research related to this transition from pediatric to adult. where would you like to see research and policy go that would make it more helpful for people who follow?
Amy: I’m not sure I have a lot for that one. Morgan has been involved in clinical research stuff for a long time. That was always a hard thing for me as a parent of signing her up for these studies. I knew she didn’t necessarily understand what they were about. Would she make that decision herself 10 years from now? I didn’t want to put her information somewhere and do something without her. Same with advocacy. Originally, she thought we shouldn’t tell anybody. Then we did this fundraiser and she kind of went out and said she wanted to tell her story. And then as you know, she later became a much broader advocate and speaks out. But I worry a little bit: you’re doing all the stuff as a child and maybe you don’t understand the ramifications of it. So, I tried to think from that viewpoint and explain and talk to her and whatever. But I think there’s probably some framework that can be put around that potentially. Or some guidance for patients different age level appropriateness to explain things like putting your data out there and about data sharing and research studies and genetic information. Morgan’s had her whole genome sequenced. Who has access to that data? And really understanding all of that for children. They may not make the same decisions as their parents and then what ramifications are down the road? That’s one area that I think could be developed a lot and have some input into. I think there’s been a lot of research done on transitions and some different toolkits. The Cure JM Foundation kind of references the arthritis one: Got Transition, I think is what it’s called. It’s in that Kids Have Arthritis, Too framework. But I think it’s called Got Transition. But it’s a pretty good framework of what to do at different ages and how to guide people through that. I think making tools like that wider known. This is probably another good thing to do.
What is today isn’t necessarily tomorrow 29:02
Health Hats: So, what haven’t I asked you that I should have?
Amy: Morgan made that YouTube video when she was frustrated in the hospital. Really, she was just venting to me. I asked her if I could record it because I wanted to send it to a few people. I had no idea it was going to go viral and create all this stuff. But it actually changed Morgan’s complete perspective on her disease, on life, on her life possibilities and gave her something to focus on in a positive light. I think whatever that is, whether it’s advocacy or whether it’s some other thing. I think we have to help kids especially kids that are dealing with chronic disease find something like that. I think Morgan probably told you she was involved in a bad car accident. So, she’s had to go through a whole other layer of healthcare challenges and memory issues and scarring on her face and brain bleeds and all the stuff. And it’s been a different experience than a chronic nature because it was all so acute and seriously urgent. But I think having that grounding of “I can do this. I know this is going to be a process.” What’s today isn’t necessarily tomorrow. She already had a foundation. A lot of people don’t have that foundation until something crazy happens. She was so young when she was diagnosed doesn’t really remember that part kind of this whole auto accident brought it all back. So, I think getting people like Morgan – young kids – involved in advocacy if they’re interested in it helps for whatever reason. I could tell you something and Morgan could tell you the same thing and you’ll have much more impact coming from her as a young person. This is raw and it has an impact. Yeah, I would encourage more people if they’re comfortable to become more advocates of their space but also to help people find that one thing whatever it is helps them have a positive outlook. I think that grounds people and helps them get through all this stuff.
Citizen expertise 31:13
Health Hats: This is a little off topic, but just since I’m sitting here talking to you… One of the things that I’ve been more and more aware of is being a person of privilege. I’m a white man that can live comfortably within his means. I have a loving family that I’m able to build a good health team and I’m Health Hats – a patient, a caregiver, a nurse and an informaticist. So, a lot of doors open for me. And so, my approach is: the door opens. Walk through it. Whether its PCORI or CMS or AHRQ or National Academy of Medicine, whatever. Now that I’m selected for things because I’m a person of privilege, but then my responsibility is okay, I’m one person. My experience is not really generalizable to anything. So, then my responsibility is to bring somebody else on board. I see with somebody like Morgan and actually, some other people that I’ve interviewed is what you just said, the passion, the eloquence, the rawness is just so attractive. It opens your heart and sort of gets past the brain barrier.
Amy: I think it’s been interesting because Morgan has inspired some other kids in the Cure JM Community. They all get IVIG (IV immunoglobulin) and Morgan goes in the hospital once a month has to get it and be used over like that 18-hour period. One of the girls in our group is trying this kind you can do at home that she does it several days a week subcutaneously and she’s being brave and videoing her getting it and posting it out. I think you know the more people you can kind of bring along. I think other kids have been interested in trying that because I’ve seen her videos and you know. But I think it’s important to get to help bring people along as you said.
Health Hats: Yeah, and it’s certainly easier to hear from your peers. Yes. I don’t know if you listened to my podcast this week, but it was, What can you learn from the Clown’s when you go to the doctor’s office? It was interesting that Jay Stewart, who was the clown that I interviewed was talking about how people react to people who are experts, like a doctor and that there’s just hard to open yourself up to people that you perceive as more knowledgeable than you, better than you, whatever.
Amy: Well, there’s another girl, too and they’re in the Cure JM group that started. A lot of them have to take Methotrexate shots and a lot of the kids actually develop nausea at the site of the needle before they ever get it. Yes. And so, this one teenage girl, Jennifer, she would video herself giving her shots and a lot of the parents would show that to the little kids and they’d be like ‘look this is something I can do. She gives herself the shot, you know, and it helped the little kids are like, okay. I want to be like her, you know, so I think it’s good. One other challenge we had with Morgan is her disease. She may have told you this already, but her disease is a juvenile onset form. But there’s also an adult onset form with some similarities but also a lot of differences. Because it’s rare, the adult rheumatologists have usually seen only adult patients. They have not often seen a now adult, juvenile patient. And so thankfully her doctor that she got in college is phenomenal. He has been so amazing. He even taught at the medical school more about the disease after having her for a while. She came home for one summer and was going to see a new adult rheumatologist there and he was, “I’m surprised you haven’t outgrown this already” and then he was challenging her “that’s not really a symptom of this” or whatever. But he only knew the adult form. There’s a real challenge of I’ve heard this from other people that how juvenile onset forms like diabetes. Even I’ve heard it from that said a lot of times when you transition, they forget that you’re not the adult form and it’s a really big transition challenge to get people to understand that your form is different just because you started. Because you have the same name doesn’t mean you have the same disease.
Health Hats: Amy, a pleasure. It’s been great stuff. Take care of yourself. Have a great night.
Ame: Okay. Thank you. Bye. Bye.
That was chock full of pearls, wasn’t it? Wisdom about joining a combined parent / teen support group to help navigate life that isn’t medical, otherwise known as most of life; trusting in your young adult children, supporting positive expressions and activities for you people at the center; self-care; and implications of decisions about health data sharing and clinical trials on your child. Amy supported Morgan’s transformation into a citizen expert. Kudos.