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The Odyssey: Parenting. Caregiving. Disability. »
Caring for Patients with Intellectual and Developmental Disabilities: A Doctor's Perspective

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In this episode, host Erin Croyle and guest Dr. Kathryn Rooth talk about just how much, or how little, medical professionals know about treating patients with disabilities. Is there a topic you want to learn more about? Something you want to ask Dr. Rooth? Feel free to contact Erin via email.

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

TRANSCRIPT:

01:00:07:20 - 01:00:37:15

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. The creator and host of The Odyssey podcast explores the unique journey were sent on when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's, Partnership for People with Disabilities.

01:00:37:17 - 01:01:10:09

Erin Croyle

This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability is. While tackling the tough stuff to an unfortunate truth, many of us learn early on is how antiquated and ablest our health care systems can be when it comes to treating people with disabilities. Joining me today is Dr. Kathryn Rooth, board certified internist and pediatrician.

01:01:10:11 - 01:01:19:17

Erin Croyle

She's also a strong advocate for people with disabilities and a mother of three.

01:01:19:19 - 01:01:25:06

Erin Croyle

Kathryn, thank you so much for coming on. Can I call you Kathryn or should I call you Dr. Rooth?

01:01:25:08 - 01:01:29:20

Dr. Kathryn Rooth

ERIN Of course you can call me Kathryn. We're friends. Thank you for having me.

01:01:29:21 - 01:01:43:04

Erin Croyle

Thanks. Yes. Full disclosure, we're friends. But Kathryn is also just an authority on this, so I'm very excited to finally have you here. I want to start with your own journey. What made you want to become a doctor?

01:01:43:06 - 01:02:06:24

Dr. Kathryn Rooth

It's kind of cliche, but I wanted to help people. As I got older and was in college, I took an interest in children with developmental disabilities and really wanted to advocate for them. I had this job where I worked for an organization that tried to integrate kids into the Boys and Girls Club who had developmental disabilities. That was my job.

01:02:06:24 - 01:02:23:02

Dr. Kathryn Rooth

I really had no training, didn't know what I was doing as a college student, but I really recognized the need then and I took an interest then it kind of took off from there, like wanting to pursue something in the health care field and always kind of leaning towards becoming a doctor.

01:02:23:04 - 01:02:37:12

Erin Croyle

I'm curious because with my own personal experience, I feel like my whole life I was so segregated from people with disabilities. What do you think drew you to helping people with it?

01:02:37:14 - 01:03:05:01

Dr. Kathryn Rooth

I honestly, Erin, I don't know. I, I took psychology classes and so I kind of started learning about a lot of the developmental disabilities. And I thought it was very interesting and how underserved and vulnerable they were and really took an interest in that patient population that they kind of drove me in that direction. I wasn't sure if I was going to be a special ed teacher or something, but I wanted to do something with this population.

01:03:05:01 - 01:03:19:00

Erin Croyle

And for so many of us, our understanding of med school, residency and beyond comes from television like Gray's Anatomy. Or if you're as old as I am, E.R. and Scrubs. So what is the process actually like?

01:03:19:02 - 01:03:46:04

Dr. Kathryn Rooth

I mean, it's a long process. And first you have to get into medical school, which is incredibly hard. It took me on more than one occasion to apply to get in. And then once you're in, you do two years of lecture where you're in the classroom or you're doing a lot of basic sciences and chemistry pathology, and then your last two years, you're doing mostly rotations in different hospitals and clinics settings to kind of figure out what type of doctor you want to be, right?

01:03:46:04 - 01:04:07:16

Dr. Kathryn Rooth

Because in medical school you're just becoming a doctor. And then once you figure out what type of doctor, then you apply to a specific residency. So I wanted to be an internist and a pediatrician, which was a combined residency. So then you apply to residency programs and depending on what type of specialty determines how long that training is.

01:04:07:16 - 01:04:30:03

Dr. Kathryn Rooth

So mine was four years. So four years of medical school. Then you go through this very stressful match where you rank, where you want to go, and all the residency programs rank who they want, and then you kind of have this cluster and you hopefully get, you know, where you want it to go in your in your list, which I was fortunate to go to Baystate Medical Center and Springfield, Massachusetts.

01:04:30:03 - 01:04:52:03

Dr. Kathryn Rooth

And I had a wonderful experience. So and I was there for four years. But essentially back then it was 80 hour workweeks, often 30 hour shifts every fourth day on a lot of the inpatient rotations. So it was exhausting. You know, they talk about like a firehose coming at you of information and knowledge and learning. That's what it was.

01:04:52:03 - 01:04:59:13

Dr. Kathryn Rooth

It was just it was a great experience. I would do it again. I could not do it again. At this age, though.

01:04:59:15 - 01:05:04:06

Erin Croyle

I mean, you're in school for so long and there's so much to learn about the human body.

01:05:04:08 - 01:05:05:05

Dr. Kathryn Rooth

Yeah.

01:05:05:07 - 01:05:11:19

Erin Croyle

Where does disability fall into all of that? And more specifically, intellectual and developmental disabilities.

01:05:11:21 - 01:05:30:10

Dr. Kathryn Rooth

Right. So in medical school, I'm trying to think back it was a long time ago when I went to med school between 2004 and 2008. I don't recall very much at all, if any. No desk to my medical school, but I just think there was a lot of other priorities. I don't even want to say priorities, but just wasn't on the radar.

01:05:30:11 - 01:05:56:19

Dr. Kathryn Rooth

I'm not sure exactly in residency because I was a pediatrician, I did get a good exposure to developmental disabilities, and I also picked electives in genetics and developmental disability rotation. So I chose to have more exposure to that because I was interested in that in my internal medicine side, not not that much.

01:05:56:21 - 01:06:24:18

Erin Croyle

So I find it really interesting that you say that because, for example, growing up I was like a really healthy kid. I didn't even do annual well visits. I just did like vaccines and physicals. And as a young adult, the only medication I took was birth control. So my knowledge of anything and navigating medical systems was minimal. And then all of a sudden, as a first time mom, I have a child with Down syndrome.

01:06:24:19 - 01:07:00:01

Erin Croyle

And he also had medical complexities. And I was thrown into navigating our health care systems on hyperdrive. I remember reading early on trying to find the right pediatrician for my son. It could be difficult. And I did find that because if a doctor didn't really care to understand and the differences in anatomy that come with Trisomy 21 or I think of all my friends whose children have even more rare genetic conditions, if there was no special interest there, the medical care really did lack.

01:07:00:03 - 01:07:12:07

Erin Croyle

So, you know, as someone who works in this field, what would you recommend for parents who are just starting out navigating this, trying to find the right pediatrician?

01:07:12:09 - 01:07:37:19

Dr. Kathryn Rooth

My heart breaks for people who can't navigate the health care system, who are not in the medical world and don't know how to navigate it, because it is a huge, daunting undertaking. You have to be comfortable with your doctor, right? I mean, when I relocated to a different city, I wasn't completely comfortable with the pediatrician. Like, I have to be comfortable with them, you know, I have to make sure they're hearing me so I change.

01:07:37:19 - 01:08:01:15

Dr. Kathryn Rooth

It is okay to change doctors if you feel like they're not hearing me. My comfort level is not what it should be. Then it's okay to find a different fit. Pediatricians understand this. They're not going to connect with every single patient. They want you to find a good fed. Some pediatricians are better at certain diagnoses and others and sometimes even on their website.

01:08:01:17 - 01:08:17:13

Dr. Kathryn Rooth

I'll look even now as a health care professional trying to find a specialist. What is their specific interest and is it ADHD? Is it autism? You know, is it this? And they're like, okay, this is what they are more passionate about. I'm going to try to see if I can get in with that one.

01:08:17:15 - 01:08:41:07

Erin Croyle

Yeah, and I love that you brought up specialist, because I know this might sound ridiculous, but I just want to be honest about this because I'm sure I can't be the only one. I went to school. I am an educated person. I was worked internationally as a journalist, and then I was thrown into the medical system and trying to seek out specialists.

01:08:41:09 - 01:09:07:06

Erin Croyle

You know, I didn't quite even understand their titles. They were so new to me. So, you know, I think pulmonology and endocrinologist and hematologist and I got endocrinology and oncology mixed up because it's just this entire new world of jargon. And as people who are not affiliated with, you know, the medical profession, a lot of times we're intimidated and we look to doctors knowing how much schooling they had.

01:09:07:08 - 01:09:29:01

Erin Croyle

I've said this in the past where you look to doctors as if they're gods, and I find that you really, as a parent who has a kid with a disability, you really have to do the advocacy. You really have to speak up. You really have to know about your child's condition and you have to find specialists that will collaborate with you.

01:09:29:06 - 01:09:52:15

Erin Croyle

Even now, my son is 14 and when I relocated, it took me four tries to find an EMT that would take my son's issues seriously and that I learned that the hard way early on when an audiologist said it's okay that he can't hear out of one ear, which is such an ablest thing to say because you would never say that to a non-disabled child.

01:09:52:17 - 01:10:10:11

Erin Croyle

But there's still this bias that exists. What's been your experience in the field? And I know you can't throw colleagues under the bus or anything, but you know, what do you see in your practices? People's understanding of disability and potential dismissal of of issues just.

01:10:10:11 - 01:10:37:14

Dr. Kathryn Rooth

Because of disability? So I'll just preface to say that we are not gods and we went to school for 8 to 12 years to learn this language. It's a whole different language, right? All of these allergies that most people don't know what a nephrologist is. And it is our job to translate the language right. We have to understand what is going on and then translate it.

01:10:37:16 - 01:11:01:12

Dr. Kathryn Rooth

And I think, you know, our training often it's so heavy on learning the language that we failed somewhat and helping translate the language to the layperson, the non-medical person, a lot of the times to maybe they get defensive because they don't have the answers for you. Maybe this is out of their comfort zone and they don't know what to do.

01:11:01:18 - 01:11:20:05

Dr. Kathryn Rooth

But I encourage parents to keep advocating if you know there's something wrong or you're not getting what you need to hear the answers and keep advocating. Like I always say, the parent knows the child best. If the parent comes in and says something's off, then I have to listen. I have to figure this out because they know them better than anybody else.

01:11:20:07 - 01:11:29:11

Dr. Kathryn Rooth

Going to your other point of people with disabilities entering the health care system, I mean, we could have a thousand podcasts about this, Erin. You know, this.

01:11:29:13 - 01:11:32:17

Erin Croyle

And we will.

01:11:32:19 - 01:11:58:17

Dr. Kathryn Rooth

It's so hard. You know, this is something that I'm very passionate about because as a pediatrician, I became very comfortable with this subset of patients. But then they get older and they enter the adult world. And the adult world doesn't have a lot of experience with this subset of patients and their comfort level is very minimal. They just they don't have a lot of experience with this patient population.

01:11:58:17 - 01:12:30:01

Dr. Kathryn Rooth

They don't really know what to do. The patient often can't communicate, they can't advocate, they can't tell them what is going on. They have to rely on the parents, which is not the norm in the adult world. And it's these complex congenital diseases that kids are surviving. They're surviving the same life expectancy as the general population. And it did not used to be like that.

01:12:30:03 - 01:13:00:24

Dr. Kathryn Rooth

Genetic syndromes such as cystic fibrosis, they used to not live into adulthood. Right. And now they're living a much more longer, fulfilling life. And so a lot of the internal medicine docs never really trained having cystic fibrosis patients. And so now that they're in their patient panel or in their office, they don't have that training or that comfort level of knowing how to take care of them.

01:13:01:01 - 01:13:25:05

Erin Croyle

It's interesting because I see that a lot with my friends who have older children where they speak about that transition out of the pediatric specialists to the adult specialists. And you're right, I mean, Down syndrome in the eighties, the life expectancy was, you know, 20 something. Now it's fifties and sixties and we're learning more and more.

01:13:25:07 - 01:13:50:17

Dr. Kathryn Rooth

Absolutely. It's funny, I a lot of the pediatricians will say I'm just holding on to them and taking care of them for longer than I should because I know them best and they don't want to transition them into the adult world. Specialists do the same thing. I had a pediatric cardiologist, so who's taking care of adults because he's like, I'm I don't want to pass them off because I know how to take care of this congenital heart disease better than adult cardiology.

01:13:50:19 - 01:14:21:12

Erin Croyle

Yeah. Kathryn, you know, you mentioned before being careful about what said and understanding things. There is so much outdated terminology that is still tossed around like m.r. I hear people say mental retardation or ma regularly, but also in defense of doctors. Actually, I think it's confusing if you're not in the inner circle of disability, the you know, person first versus disability pride language.

01:14:21:14 - 01:14:32:23

Erin Croyle

Is there any professional development offered to doctors to keep up with what is current acceptable standards of our jargon in the disability world?

01:14:33:00 - 01:15:04:02

Dr. Kathryn Rooth

I'm sure there is. I have not seen it or been a part of it. I mean, I know, Erin, I told you before we came on this, I said, you know, I right now predominantly work with the geriatric population. I don't really see any people with developmental disabilities anymore, unfortunately. So I haven't been out of it, of being aware of the correct terminology, because I feel like it does evolve and it has changed and EMDR is now ready.

01:15:04:03 - 01:15:28:06

Dr. Kathryn Rooth

But is there something else that's more appropriate to say that I have not heard? So I said, Erin, please, I don't want to say anything that is insensitive or inappropriate because, you know, I just I'm afraid to use the incorrect terminology and be offensive. And so sometimes I don't say anything at all because I don't know what the right thing is to say.

01:15:28:08 - 01:15:55:02

Erin Croyle

I love that we're bringing this up, though, because I've been with doctors who have said, Down syndrome kid, and I cringe because in the Down's syndrome community it is person first. But in the autism community, it's autistic children. And there's also, like I mentioned, disability pride. So it's like this dance where parents and advocates don't want to say anything and doctors are afraid of saying the wrong thing.

01:15:55:04 - 01:16:17:13

Erin Croyle

So I how do we bridge that gap? Is there a way to have that conversation as a parent who's advocating for their child? Like, if I went in to see you and you said Down's syndrome patients are my favorite and I cringe, I mean, what would you want me to say? How can we have this be a better relationship to change together?

01:16:17:15 - 01:16:44:14

Dr. Kathryn Rooth

Yeah, I mean, in my mind, that sounds okay to say that, but you're saying you cringe. So I want to know why is that making you cringe, saying Down's syndrome patients are my favorite and you can tell me. But I will also say you're probably exhausted, you're overwhelmed, right? You have a kid with special needs who needs a lot of specialty appointments, a lot of academic interventions.

01:16:44:20 - 01:17:02:23

Dr. Kathryn Rooth

And you're at your wit's end. And this is probably the thousandth time that you've heard this comment and you snap and you are kind of like, are you kidding me? Like, really? You know, and I think that a lot of times the parents are at their wit's end when they get to our point. And it's frustration which we get.

01:17:03:00 - 01:17:18:04

Dr. Kathryn Rooth

But maybe, you know, saying, I love that you love taking care of children with Down's syndrome and then explain why that makes you cringe, because I honestly have no idea why that would make you cringe. I love.

01:17:18:04 - 01:17:43:08

Erin Croyle

This. This is so interesting. So I've mellowed out a little bit because I understand why go out and. No, no, no. So I've mellowed out because I've had to because there is so much in the world that is just so painful that I see happen to people with disabilities or set about. And I think I think that I pick my battles.

01:17:43:10 - 01:18:07:00

Erin Croyle

That's kind of what it is. So if a doctor were to use MMR, like, for example, one time a therapist was talking about how hard it was years ago, loved this therapist and used the term m r a couple of times and I was just like, I wanted to correct them. But I also like, I just I'm so tired.

01:18:07:02 - 01:18:29:15

Erin Croyle

Right, right. But now, at this point in the journey, I think that I kind of let Down's syndrome kid go or Down's syndrome patient. But if it's the R word I want and I focus on advocating for my child's health rather than all of the semantics, because I feel like sometimes we get so caught up in semantics that we can't see the forest for the trees.

01:18:29:21 - 01:18:54:07

Erin Croyle

True. I mean, but I also feel like to say Down syndrome patients. So I think with that in why a lot of parents are touchy is because when we say person first, so many people see Down's syndrome and don't see the person. And so when you say Down's syndrome patients, it feels like you're saying, you know, they're all the same, which I know you're not.

01:18:54:08 - 01:19:05:15

Erin Croyle

Right, but it's just the constant barrage of ableism that we see where it just feels like people just see the disability and not the person.

01:19:05:17 - 01:19:16:01

Dr. Kathryn Rooth

So in the medical world, though, if I said I take care of it, so is it I take care of patients with Down's syndrome is better than I take care of Down's syndrome patients.

01:19:16:02 - 01:19:18:04

Erin Croyle

Yeah, it's something that simple.

01:19:18:06 - 01:19:28:00

Dr. Kathryn Rooth

Yeah. I mean, to me that that's that's very similar and pretty much the same as saying I take care of cancer patients. I take care of patients with cancer.

01:19:28:02 - 01:19:46:21

Erin Croyle

This is the thing. I feel like we need to have more conversations like this so we don't get stuck in being pissed off about something that is not intended to be demeaning in any way, shape or form. But it's hard because we are constantly dealing with.

01:19:46:23 - 01:19:48:06

Dr. Kathryn Rooth

A lot of ignorant people.

01:19:48:09 - 01:19:49:06

Erin Croyle

Yes.

01:19:49:08 - 01:20:12:16

Dr. Kathryn Rooth

Yeah. And I mean, I'm always correcting people in the health field always and will continue to when they use AMA. And I think every health care professional that knows the correct terminology should do the same thing. It's our responsibility to teach our fellow health care professionals the correct terminology in terms of patients with Down's syndrome and Down's syndrome patients.

01:20:12:16 - 01:20:35:05

Dr. Kathryn Rooth

I see now how you word it, how it does affect you. In my medical brain, when I hear Down's syndrome, I start to think of all the medical issues that go along with somebody that has Down syndrome. I'm not thinking I'm not thinking that this is not a person. You know what I mean? It's just I'm automatically starting to go down.

01:20:35:07 - 01:20:38:17

Dr. Kathryn Rooth

Down's syndrome, medical issues.

01:20:38:19 - 01:20:44:05

Erin Croyle

Right? Trisomy 21, three copies of that chromosome and how that affects the body, the anatomy.

01:20:44:07 - 01:21:04:04

Dr. Kathryn Rooth

So I also they're creating a story for me when they're calling me. I have a Down's syndrome patient with this. You know, I'm already thinking, okay, that their immune system is not the typical immune system, their anatomy, if they ever need to get intubated. It is also not the same as an average person. I don't even the typical person a non down syndrome person.

01:21:04:04 - 01:21:08:00

Dr. Kathryn Rooth

And messing this up right now, I'm getting nervous and.

01:21:08:02 - 01:21:31:01

Erin Croyle

What this is but this so I don't you know I don't and I want to leave this in so let's keep going because anyone listening I do edit these podcasts. Yeah it's important to cut out some of the stuff, but these are the conversations that people are afraid to have, and I think we forget to think of intentions.

01:21:31:03 - 01:21:40:22

Erin Croyle

Intentions are good, and sometimes we get so caught up in the semantics. Yeah. That you're thinking clinically.

01:21:40:24 - 01:21:42:02

Dr. Kathryn Rooth

Right?

01:21:42:04 - 01:21:59:20

Erin Croyle

And so adding a preposition doesn't really matter, does it? When you're thinking clinically, whereas parents are coming in. And in the regular world we don't describe Bob is a diabetic man like we don't use that.

01:21:59:22 - 01:22:21:19

Dr. Kathryn Rooth

Right? So if somebody called me and said, I'm seeing a colon cancer patient, you know, with this, it usually doesn't start off as I'm seeing a patient with colon cancer. That is how they usually say it. So you're right that we are saying it wrong when we say I'm seeing a Down's syndrome patient, I'm seeing a patient with Down's syndrome with this.

01:22:21:21 - 01:22:23:07

Dr. Kathryn Rooth

Right.

01:22:23:09 - 01:22:39:10

Erin Croyle

I don't know. I have to kind of wonder and if we were really going on a tangent here, but again, I love this. You have to kind of wonder because colon cancer ideally will be cured, whereas Down's Syndrome is part of that person forever. Cerebral palsy is part of that person forever.

01:22:39:12 - 01:22:58:11

Dr. Kathryn Rooth

So yeah, but in the medical world you're saying what is relevant to the situation in the moment, right? And the answer is relevant in the situation in that moment with that person. Down's syndrome will always be relevant to that person in the medical world.

01:22:58:13 - 01:23:10:03

Erin Croyle

Yeah. It sounds like there's not really an answer except for maybe just trying to offer each other a little more grace when we have conversations.

01:23:10:05 - 01:23:33:18

Dr. Kathryn Rooth

Yeah, and I. I also want to recognize, too, like, we're in this post-pandemic make health care world where everyone is burned out and short staffed and overwhelmed. And I think people who work in the health care field want to say it correctly and do the right thing. That's why they are in the health care world. And a lot of it is just because we don't know any better or no one has told us, though, what you're not saying.

01:23:33:18 - 01:23:50:02

Dr. Kathryn Rooth

It correctly. And so we need parents to kindly educate us because we are learning from you, Erin, You know, I text you all the time I had this situation. How should I have handled this? Because I want to do it correctly.

01:23:50:04 - 01:24:01:06

Erin Croyle

Right. It's interesting, though, I think as parents and probably as doctors, am I right in that the way that our insurance systems work, you're really only supposed to see a patient for about 15 minutes.

01:24:01:08 - 01:24:02:00

Dr. Kathryn Rooth

Correct.

01:24:02:02 - 01:24:26:15

Erin Croyle

Okay. So in that 15 minutes, do I want to spend that time talking about my child's medical issues or do we want to get caught into explaining things that matter but really aren't pertinent to what's going on? I mean, especially as parents in that short amount of time. I mean, we need to discuss medical issues. I don't really want to get into a debate about person for disability pride.

01:24:26:17 - 01:24:33:22

Dr. Kathryn Rooth

You're absolutely right. And honestly, this is the first time I've heard of Disability Pride and I love it. I've never heard that terminology.

01:24:33:24 - 01:25:01:02

Erin Croyle

Well, it's the beauty of being part of this work and being so heavily involved is you get to learn about this and and what I love sometimes is I really try to push the boundaries and my son is disabled and my peers with disabilities have really taught me like disability pride. There's nothing wrong with saying I'm disabled. It is part of the human condition, is part of who we are.

01:25:01:04 - 01:25:03:07

Erin Croyle

Why are we trying to hide it?

01:25:03:09 - 01:25:24:21

Dr. Kathryn Rooth

Yeah, no, I absolutely agree. I'm kind of backtracking. But going back to the medical appointments, I will say doctors have their agenda of what they want to address. Right. They want to make sure your blood pressure is under control. They want to make sure the weight they have certain metrics that they want to address. And you're coming in with your own agenda of what things that you want to have answers to.

01:25:24:23 - 01:25:47:20

Dr. Kathryn Rooth

So I would recommend especially, you know, parents with kids with disabilities because it is overwhelming. You get sidetracked, you get distracted, you're sleep deprived is right down. You know, at least three things that you have questions, your top three things that you have questions about so that you don't forget because our doctor, like you said, as 15 minutes, they're probably already behind.

01:25:47:22 - 01:26:09:04

Dr. Kathryn Rooth

You've been probably waiting forever, so you're already annoyed and they're rushing around. So they want to make sure, okay, everything is good. Okay, good. Check, vaccines check. And you're like, wait, I have these questions that I need to have addressed. So coming in with your questions written down, I do that. And I'm a medical professional because I don't want to forget because they have their own agenda that they want to talk to you about.

01:26:09:06 - 01:26:25:09

Erin Croyle

Yeah, I have to write it down, too. And I utilize my chart a lot because I have to, because there's just things that pop up in between appointments or I know that I'll forget. So I message ahead of time, things like that, to make sure that we cover all the bases.

01:26:25:11 - 01:26:45:05

Dr. Kathryn Rooth

And it's good. I mean, the portals are very overwhelming, right? If you have more than one kid and you have three different portals with three different passwords for just one doctor, and then you add specialists for multiple specialists, and then that's like eight portals for one kid, you know, and that's just the medical side. You're not even talking the academic side.

01:26:45:05 - 01:26:47:22

Dr. Kathryn Rooth

I mean, it's it's a lot.

01:26:47:24 - 01:27:10:03

Erin Croyle

It is a lot. You're right. My son has I don't even know how many specialists right now. It's almost a dozen, I think. Thankfully, the my charts are kind of related and interlinked aside from the Nutrition's office. But it's really hard. And then you're dealing with as they get older, you have to get a proxy to access their my chart.

01:27:10:03 - 01:27:20:08

Erin Croyle

Once they're a teenager. It's so much work. I mean, do you have any recommendations for families to streamline any of this?

01:27:20:18 - 01:27:43:07

Dr. Kathryn Rooth

gosh, Erin, I wish I did. You know, keeping track in your phone as some sort of notebook, having all your passwords someplace. You know, really, you got to find a main hub, a pediatrician that's on it. Right. And that's going to help you navigate the health care system and kind of be your main hub of where you're going out.

01:27:43:08 - 01:28:11:23

Dr. Kathryn Rooth

But really, it's a daunting task. I'm not a very organized person. And so putting it in your phone, putting it in a notebook, setting, it's cyber. You know, you're always going to have access to it, bringing it to every single appointment. So you have a list, a running list of what's been going on. You have your questions in advance, having separate notebooks for different specialists, you know, or bringing all the notebooks at this pulmonologist said to me about this because the cardiologist says it's the lungs and the pulmonologist says it's the heart.

01:28:11:23 - 01:28:16:00

Dr. Kathryn Rooth

But this, you know, so you have all the information with you so you're prepared.

01:28:16:02 - 01:28:37:03

Erin Croyle

Another parent, I know whose son has had a lifetime of just so much keeps kind of a one pager and updates it that has every medical condition and current medications that can be in a document that can be easily emailed or printed or whatever, because everyone seems to need that information, right?

01:28:37:03 - 01:28:37:13

Dr. Kathryn Rooth

Yeah.

01:28:37:18 - 01:28:38:08

Erin Croyle

List of.

01:28:38:10 - 01:28:57:13

Dr. Kathryn Rooth

Patients. List of medical problems, List of surgeries. Lists of specialists. When the surgeries were a list of allergies, having that in a document and having it saved, presenting it and just giving them the copy because they're always going to ask the same questions what medications you're on, you know, any new allergies, you know, so you have it already.

01:28:57:15 - 01:29:32:07

Erin Croyle

And then to I mean, this is morbid, but I, I handle most of my son's disability related stuff, which is practically a full time job between community based living, school medical stuff and so on. But what happens if something happens to me? That stuff that's in my brain is is just there. And so I think those documents are important to keep on a shared drive and and make sure the passwords are somewhere where whoever your co caregiver would be has it.

01:29:32:08 - 01:29:34:13

Erin Croyle

It's so important.

01:29:34:15 - 01:29:40:11

Dr. Kathryn Rooth

Yeah I agree. Yeah. And it puts a lot of responsibility on the siblings too.

01:29:40:13 - 01:29:42:12

Erin Croyle

It is. I feel like that.

01:29:42:14 - 01:29:48:09

Dr. Kathryn Rooth

That is a whole other podcast for sure. Yeah, I agree.

01:29:48:11 - 01:30:22:19

Erin Croyle

You know, Kathryn, it's funny, I consider myself to be a pretty tenacious person. As I mentioned before, I had a hard time kind of navigating, figuring out what advice to take and when to find a new doctor or what specialists to find. And I remember when my son was way younger, he would get pneumonia and it was so bad he would be hospitalized and it would happen like he would be sick all year and he would have like two weeks right before his birthday, where he would finally have his lungs clear and be okay.

01:30:22:19 - 01:30:45:07

Erin Croyle

And then I swear, every year, right on or right before his birthday, he'd get really sick again and we'd call it pneumonia Watch. And I got to a point where I really likes my son's pulmonologist, but I went in there. I mean, he'd be on albuterol and duodenum and round the clock breathing treatments and two antibiotics at a time and steroids.

01:30:45:09 - 01:31:10:08

Erin Croyle

And he said, listen, I am done treating this. What can we do to prevent this? And it really it still shocks me that I had to ask that question. And by asking that question though, the doctor then said, you know what, we can check his IgG levels. And it turned out that he had deficiencies in his immune system.

01:31:10:14 - 01:31:43:03

Erin Croyle

And by getting the infusions right, we've been managing that for many years now. And in that time we're learning more about how the extra copy of the 21st chromosome impacts the immune system and can make you go a little haywire. And we're still kind of on the cutting edge of learning that. But at any rate, I think it's really important for people to know that you really have to fight and you it doesn't have to be a fight, but you have to collaborate.

01:31:43:05 - 01:31:58:16

Erin Croyle

And if your medical team isn't willing to collaborate, you need to find new people. And your experience, is that what you see as well?

01:31:58:18 - 01:32:17:19

Dr. Kathryn Rooth

So yeah, he's coming in and he's sick, right? So our job is we want to make him feel better, more in the moment of a can. Acute illness, tunnel vision. Let's make him better. And maybe this is the first time I'm seeing this patient and there's a lot of providers that rotate in, so they're not doing this chart review to look back.

01:32:17:19 - 01:32:36:12

Dr. Kathryn Rooth

Wow. Every three months this kid gets pneumonia, you know, and he only comes in when he's sick because we only have a 1050 minute time slot. We don't have a lot of time to do a chart review. So you're seeing a new person, same thing, antibiotics every three months, every three months. And you're tired, you're exhausted. You're not thinking, I'm going to go there when he's.

01:32:36:12 - 01:33:00:22

Dr. Kathryn Rooth

Well, because I'm there all the time when he's sick. So amazing that you did that and you ask that question because you kind of took them out of their tunnel vision and allowed them to take a step back and say, yeah, like, let's let's figure this out. But that takes more time, right? And most of the doctors don't have that time because you're in a very constricted timeslot to address the acute illness.

01:33:00:24 - 01:33:24:07

Dr. Kathryn Rooth

They're not really looking to be proactive when they have to be reactive in that visit. So going back to the go see your specialists when you're not sick to talk about these things, you know, to get on the same page of what can I do to prevent this from happening again, What do I need to do to keep them from continually getting sick?

01:33:24:09 - 01:33:28:11

Erin Croyle

Yeah. And do you find that most doctors are willing to have those conversations?

01:33:28:13 - 01:33:41:11

Dr. Kathryn Rooth

Yeah, I think so. I think they may not have the answers. They may not know, right? I mean, why? How do I stop getting strep throat all the time? A basic illness? I don't think there's really anything other than basic hygiene.

01:33:41:13 - 01:34:05:04

Erin Croyle

Yeah. I think it's important to note for families and parents and caregivers that might be listening, you know, there are resources out there to help you navigate this. So the Center for Family Involvement, we have family navigators that we're not going to tell you what doctor to go to, but will reassure you that finding a second opinion is important.

01:34:05:04 - 01:34:24:15

Erin Croyle

And we have 1 to 1 support where you can go over these things. And I think, Kathryn, you mentioned really collaborating with your pediatrician and finding one that really knows about developmental intellectual disabilities, but also maybe doesn't but cares enough to do the work with.

01:34:24:15 - 01:34:49:15

Dr. Kathryn Rooth

You agree? Yeah. Even if it's related to a specialty that they may not have, you know, they sent you to you can still send them a message to collaborate. This is what the specialist told me. Do you agree with this? Does this make sense or I'm questioning it because of this? I mean, that is what your pediatrician is there for, to to support you and helping you make these decisions that the specialist is suggesting.

01:34:49:16 - 01:35:05:02

Erin Croyle

Yeah. And they need to be aware of things that are happening with those specialists. And I think that's where my chart kind of comes in handy to just send updates when you get updates so they can update the chart even between your visits, right?

01:35:05:03 - 01:35:06:19

Dr. Kathryn Rooth

Right. Yeah.

01:35:06:21 - 01:35:21:02

Erin Croyle

I guess I guess my last question for you would be, I know your career is kind of evolving and changing along with our medical systems, which are, as everyone knows, super flawed here in the United States. But what would your dream job be?

01:35:21:10 - 01:35:50:00

Dr. Kathryn Rooth

gosh. And so I love taking care of the most vulnerable. So if there was a way to take care of adults and children with developmental disabilities, the geriatric population and the dying population, in my mind, those are the most vulnerable people that need the most advocacy. And if I could create a clinic or a program that supported those people, that would be my thing.

01:35:50:02 - 01:35:51:13

Dr. Kathryn Rooth

I would love that.

01:35:51:15 - 01:35:52:06

Erin Croyle

I can tell.

01:35:52:06 - 01:35:53:17

Dr. Kathryn Rooth

You that. I would love that.

01:35:53:17 - 01:36:27:01

Erin Croyle

And I don't know anyone within my disability parenting group, if you will, that would not love that. My gosh, I maybe maybe someone's listening here and can help make that a reality because I feel like every state, every region needs one of those. We really need more effort of really caring and really being curious about our chromosomes are neurodiversity.

01:36:27:03 - 01:36:53:02

Erin Croyle

Our genetic makeup impacts our overall health because I think that that's been left behind. And we're just starting to figure out that just because someone has an intellectual disability doesn't mean that that is what is causing a behavior or an illness or for them to shut down. It's it's it's so much deeper than what our eyes see, if you will.

01:36:53:03 - 01:37:11:20

Dr. Kathryn Rooth

Yeah. Agree. And I would say to the parents that are listening to keep advocating keep correcting us and keep educating us because we need to learn and we need to hear your stories and we need to understand how to treat your children the way they should be treated.

01:37:11:22 - 01:37:31:14

Erin Croyle

Thank you. And I'll add anyone listening. Kathryn, you're going to be on again. I know we're going to address some of these things that we didn't get to go into more today. And I can't wait. So anyone who maybe has a topic they want us to cover in our future conversations, please do contact me and the information do that is in my show notes.

01:37:31:14 - 01:37:33:06

Erin Croyle

So thank you.

01:37:33:08 - 01:37:40:13

Dr. Kathryn Rooth

Thanks, Erin.

01:37:40:15 - 01:38:04:11

Erin Croyle

And thank you listeners for joining us. Please rate review, share and subscribe to this podcast of ours and let me know what you want to learn more about whether it's an issue for me and my friend Dr. Kathryn Rooth to explore or something else entirely different. Send it my way. There's no shortage of topics to cover, so feel free to add on to my long list.

01:38:04:13 - 01:38:11:01

Erin Croyle

This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.

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#Society #Parenting #Relationship #Erin Croyle
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Caring for Patients with Intellectual and Developmental Disabilities: A Doctor's Perspective

The Odyssey: Parenting. Caregiving. Disability.

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In this episode, host Erin Croyle and guest Dr. Kathryn Rooth talk about just how much, or how little, medical professionals know about treating patients with disabilities. Is there a topic you want to learn more about? Something you want to ask Dr. Rooth? Feel free to contact Erin via email.

The Odyssey: Parenting. Caregiving. Disability.

The Center for Family Involvement at VCU School of Education's Partnership for People with Disabilities provides informational and emotional support to people with disabilities and their families. All of our services are free. We just want to help. We know how hard this can be because we're in it with you.

TRANSCRIPT:

01:00:07:20 - 01:00:37:15

Erin Croyle

Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle. The creator and host of The Odyssey podcast explores the unique journey were sent on when a loved one has a disability. I started down this path more than a decade ago when my first child was born with Down's Syndrome. My journey weaved its way here, working with the Center for Family Involvement at VCU's, Partnership for People with Disabilities.

01:00:37:17 - 01:01:10:09

Erin Croyle

This podcast does a deep dive into the joys and hardships we face. We celebrate how amazing the odyssey of parenting, caregiving and disability is. While tackling the tough stuff to an unfortunate truth, many of us learn early on is how antiquated and ablest our health care systems can be when it comes to treating people with disabilities. Joining me today is Dr. Kathryn Rooth, board certified internist and pediatrician.

01:01:10:11 - 01:01:19:17

Erin Croyle

She's also a strong advocate for people with disabilities and a mother of three.

01:01:19:19 - 01:01:25:06

Erin Croyle

Kathryn, thank you so much for coming on. Can I call you Kathryn or should I call you Dr. Rooth?

01:01:25:08 - 01:01:29:20

Dr. Kathryn Rooth

ERIN Of course you can call me Kathryn. We're friends. Thank you for having me.

01:01:29:21 - 01:01:43:04

Erin Croyle

Thanks. Yes. Full disclosure, we're friends. But Kathryn is also just an authority on this, so I'm very excited to finally have you here. I want to start with your own journey. What made you want to become a doctor?

01:01:43:06 - 01:02:06:24

Dr. Kathryn Rooth

It's kind of cliche, but I wanted to help people. As I got older and was in college, I took an interest in children with developmental disabilities and really wanted to advocate for them. I had this job where I worked for an organization that tried to integrate kids into the Boys and Girls Club who had developmental disabilities. That was my job.

01:02:06:24 - 01:02:23:02

Dr. Kathryn Rooth

I really had no training, didn't know what I was doing as a college student, but I really recognized the need then and I took an interest then it kind of took off from there, like wanting to pursue something in the health care field and always kind of leaning towards becoming a doctor.

01:02:23:04 - 01:02:37:12

Erin Croyle

I'm curious because with my own personal experience, I feel like my whole life I was so segregated from people with disabilities. What do you think drew you to helping people with it?

01:02:37:14 - 01:03:05:01

Dr. Kathryn Rooth

I honestly, Erin, I don't know. I, I took psychology classes and so I kind of started learning about a lot of the developmental disabilities. And I thought it was very interesting and how underserved and vulnerable they were and really took an interest in that patient population that they kind of drove me in that direction. I wasn't sure if I was going to be a special ed teacher or something, but I wanted to do something with this population.

01:03:05:01 - 01:03:19:00

Erin Croyle

And for so many of us, our understanding of med school, residency and beyond comes from television like Gray's Anatomy. Or if you're as old as I am, E.R. and Scrubs. So what is the process actually like?

01:03:19:02 - 01:03:46:04

Dr. Kathryn Rooth

I mean, it's a long process. And first you have to get into medical school, which is incredibly hard. It took me on more than one occasion to apply to get in. And then once you're in, you do two years of lecture where you're in the classroom or you're doing a lot of basic sciences and chemistry pathology, and then your last two years, you're doing mostly rotations in different hospitals and clinics settings to kind of figure out what type of doctor you want to be, right?

01:03:46:04 - 01:04:07:16

Dr. Kathryn Rooth

Because in medical school you're just becoming a doctor. And then once you figure out what type of doctor, then you apply to a specific residency. So I wanted to be an internist and a pediatrician, which was a combined residency. So then you apply to residency programs and depending on what type of specialty determines how long that training is.

01:04:07:16 - 01:04:30:03

Dr. Kathryn Rooth

So mine was four years. So four years of medical school. Then you go through this very stressful match where you rank, where you want to go, and all the residency programs rank who they want, and then you kind of have this cluster and you hopefully get, you know, where you want it to go in your in your list, which I was fortunate to go to Baystate Medical Center and Springfield, Massachusetts.

01:04:30:03 - 01:04:52:03

Dr. Kathryn Rooth

And I had a wonderful experience. So and I was there for four years. But essentially back then it was 80 hour workweeks, often 30 hour shifts every fourth day on a lot of the inpatient rotations. So it was exhausting. You know, they talk about like a firehose coming at you of information and knowledge and learning. That's what it was.

01:04:52:03 - 01:04:59:13

Dr. Kathryn Rooth

It was just it was a great experience. I would do it again. I could not do it again. At this age, though.

01:04:59:15 - 01:05:04:06

Erin Croyle

I mean, you're in school for so long and there's so much to learn about the human body.

01:05:04:08 - 01:05:05:05

Dr. Kathryn Rooth

Yeah.

01:05:05:07 - 01:05:11:19

Erin Croyle

Where does disability fall into all of that? And more specifically, intellectual and developmental disabilities.

01:05:11:21 - 01:05:30:10

Dr. Kathryn Rooth

Right. So in medical school, I'm trying to think back it was a long time ago when I went to med school between 2004 and 2008. I don't recall very much at all, if any. No desk to my medical school, but I just think there was a lot of other priorities. I don't even want to say priorities, but just wasn't on the radar.

01:05:30:11 - 01:05:56:19

Dr. Kathryn Rooth

I'm not sure exactly in residency because I was a pediatrician, I did get a good exposure to developmental disabilities, and I also picked electives in genetics and developmental disability rotation. So I chose to have more exposure to that because I was interested in that in my internal medicine side, not not that much.

01:05:56:21 - 01:06:24:18

Erin Croyle

So I find it really interesting that you say that because, for example, growing up I was like a really healthy kid. I didn't even do annual well visits. I just did like vaccines and physicals. And as a young adult, the only medication I took was birth control. So my knowledge of anything and navigating medical systems was minimal. And then all of a sudden, as a first time mom, I have a child with Down syndrome.

01:06:24:19 - 01:07:00:01

Erin Croyle

And he also had medical complexities. And I was thrown into navigating our health care systems on hyperdrive. I remember reading early on trying to find the right pediatrician for my son. It could be difficult. And I did find that because if a doctor didn't really care to understand and the differences in anatomy that come with Trisomy 21 or I think of all my friends whose children have even more rare genetic conditions, if there was no special interest there, the medical care really did lack.

01:07:00:03 - 01:07:12:07

Erin Croyle

So, you know, as someone who works in this field, what would you recommend for parents who are just starting out navigating this, trying to find the right pediatrician?

01:07:12:09 - 01:07:37:19

Dr. Kathryn Rooth

My heart breaks for people who can't navigate the health care system, who are not in the medical world and don't know how to navigate it, because it is a huge, daunting undertaking. You have to be comfortable with your doctor, right? I mean, when I relocated to a different city, I wasn't completely comfortable with the pediatrician. Like, I have to be comfortable with them, you know, I have to make sure they're hearing me so I change.

01:07:37:19 - 01:08:01:15

Dr. Kathryn Rooth

It is okay to change doctors if you feel like they're not hearing me. My comfort level is not what it should be. Then it's okay to find a different fit. Pediatricians understand this. They're not going to connect with every single patient. They want you to find a good fed. Some pediatricians are better at certain diagnoses and others and sometimes even on their website.

01:08:01:17 - 01:08:17:13

Dr. Kathryn Rooth

I'll look even now as a health care professional trying to find a specialist. What is their specific interest and is it ADHD? Is it autism? You know, is it this? And they're like, okay, this is what they are more passionate about. I'm going to try to see if I can get in with that one.

01:08:17:15 - 01:08:41:07

Erin Croyle

Yeah, and I love that you brought up specialist, because I know this might sound ridiculous, but I just want to be honest about this because I'm sure I can't be the only one. I went to school. I am an educated person. I was worked internationally as a journalist, and then I was thrown into the medical system and trying to seek out specialists.

01:08:41:09 - 01:09:07:06

Erin Croyle

You know, I didn't quite even understand their titles. They were so new to me. So, you know, I think pulmonology and endocrinologist and hematologist and I got endocrinology and oncology mixed up because it's just this entire new world of jargon. And as people who are not affiliated with, you know, the medical profession, a lot of times we're intimidated and we look to doctors knowing how much schooling they had.

01:09:07:08 - 01:09:29:01

Erin Croyle

I've said this in the past where you look to doctors as if they're gods, and I find that you really, as a parent who has a kid with a disability, you really have to do the advocacy. You really have to speak up. You really have to know about your child's condition and you have to find specialists that will collaborate with you.

01:09:29:06 - 01:09:52:15

Erin Croyle

Even now, my son is 14 and when I relocated, it took me four tries to find an EMT that would take my son's issues seriously and that I learned that the hard way early on when an audiologist said it's okay that he can't hear out of one ear, which is such an ablest thing to say because you would never say that to a non-disabled child.

01:09:52:17 - 01:10:10:11

Erin Croyle

But there's still this bias that exists. What's been your experience in the field? And I know you can't throw colleagues under the bus or anything, but you know, what do you see in your practices? People's understanding of disability and potential dismissal of of issues just.

01:10:10:11 - 01:10:37:14

Dr. Kathryn Rooth

Because of disability? So I'll just preface to say that we are not gods and we went to school for 8 to 12 years to learn this language. It's a whole different language, right? All of these allergies that most people don't know what a nephrologist is. And it is our job to translate the language right. We have to understand what is going on and then translate it.

01:10:37:16 - 01:11:01:12

Dr. Kathryn Rooth

And I think, you know, our training often it's so heavy on learning the language that we failed somewhat and helping translate the language to the layperson, the non-medical person, a lot of the times to maybe they get defensive because they don't have the answers for you. Maybe this is out of their comfort zone and they don't know what to do.

01:11:01:18 - 01:11:20:05

Dr. Kathryn Rooth

But I encourage parents to keep advocating if you know there's something wrong or you're not getting what you need to hear the answers and keep advocating. Like I always say, the parent knows the child best. If the parent comes in and says something's off, then I have to listen. I have to figure this out because they know them better than anybody else.

01:11:20:07 - 01:11:29:11

Dr. Kathryn Rooth

Going to your other point of people with disabilities entering the health care system, I mean, we could have a thousand podcasts about this, Erin. You know, this.

01:11:29:13 - 01:11:32:17

Erin Croyle

And we will.

01:11:32:19 - 01:11:58:17

Dr. Kathryn Rooth

It's so hard. You know, this is something that I'm very passionate about because as a pediatrician, I became very comfortable with this subset of patients. But then they get older and they enter the adult world. And the adult world doesn't have a lot of experience with this subset of patients and their comfort level is very minimal. They just they don't have a lot of experience with this patient population.

01:11:58:17 - 01:12:30:01

Dr. Kathryn Rooth

They don't really know what to do. The patient often can't communicate, they can't advocate, they can't tell them what is going on. They have to rely on the parents, which is not the norm in the adult world. And it's these complex congenital diseases that kids are surviving. They're surviving the same life expectancy as the general population. And it did not used to be like that.

01:12:30:03 - 01:13:00:24

Dr. Kathryn Rooth

Genetic syndromes such as cystic fibrosis, they used to not live into adulthood. Right. And now they're living a much more longer, fulfilling life. And so a lot of the internal medicine docs never really trained having cystic fibrosis patients. And so now that they're in their patient panel or in their office, they don't have that training or that comfort level of knowing how to take care of them.

01:13:01:01 - 01:13:25:05

Erin Croyle

It's interesting because I see that a lot with my friends who have older children where they speak about that transition out of the pediatric specialists to the adult specialists. And you're right, I mean, Down syndrome in the eighties, the life expectancy was, you know, 20 something. Now it's fifties and sixties and we're learning more and more.

01:13:25:07 - 01:13:50:17

Dr. Kathryn Rooth

Absolutely. It's funny, I a lot of the pediatricians will say I'm just holding on to them and taking care of them for longer than I should because I know them best and they don't want to transition them into the adult world. Specialists do the same thing. I had a pediatric cardiologist, so who's taking care of adults because he's like, I'm I don't want to pass them off because I know how to take care of this congenital heart disease better than adult cardiology.

01:13:50:19 - 01:14:21:12

Erin Croyle

Yeah. Kathryn, you know, you mentioned before being careful about what said and understanding things. There is so much outdated terminology that is still tossed around like m.r. I hear people say mental retardation or ma regularly, but also in defense of doctors. Actually, I think it's confusing if you're not in the inner circle of disability, the you know, person first versus disability pride language.

01:14:21:14 - 01:14:32:23

Erin Croyle

Is there any professional development offered to doctors to keep up with what is current acceptable standards of our jargon in the disability world?

01:14:33:00 - 01:15:04:02

Dr. Kathryn Rooth

I'm sure there is. I have not seen it or been a part of it. I mean, I know, Erin, I told you before we came on this, I said, you know, I right now predominantly work with the geriatric population. I don't really see any people with developmental disabilities anymore, unfortunately. So I haven't been out of it, of being aware of the correct terminology, because I feel like it does evolve and it has changed and EMDR is now ready.

01:15:04:03 - 01:15:28:06

Dr. Kathryn Rooth

But is there something else that's more appropriate to say that I have not heard? So I said, Erin, please, I don't want to say anything that is insensitive or inappropriate because, you know, I just I'm afraid to use the incorrect terminology and be offensive. And so sometimes I don't say anything at all because I don't know what the right thing is to say.

01:15:28:08 - 01:15:55:02

Erin Croyle

I love that we're bringing this up, though, because I've been with doctors who have said, Down syndrome kid, and I cringe because in the Down's syndrome community it is person first. But in the autism community, it's autistic children. And there's also, like I mentioned, disability pride. So it's like this dance where parents and advocates don't want to say anything and doctors are afraid of saying the wrong thing.

01:15:55:04 - 01:16:17:13

Erin Croyle

So I how do we bridge that gap? Is there a way to have that conversation as a parent who's advocating for their child? Like, if I went in to see you and you said Down's syndrome patients are my favorite and I cringe, I mean, what would you want me to say? How can we have this be a better relationship to change together?

01:16:17:15 - 01:16:44:14

Dr. Kathryn Rooth

Yeah, I mean, in my mind, that sounds okay to say that, but you're saying you cringe. So I want to know why is that making you cringe, saying Down's syndrome patients are my favorite and you can tell me. But I will also say you're probably exhausted, you're overwhelmed, right? You have a kid with special needs who needs a lot of specialty appointments, a lot of academic interventions.

01:16:44:20 - 01:17:02:23

Dr. Kathryn Rooth

And you're at your wit's end. And this is probably the thousandth time that you've heard this comment and you snap and you are kind of like, are you kidding me? Like, really? You know, and I think that a lot of times the parents are at their wit's end when they get to our point. And it's frustration which we get.

01:17:03:00 - 01:17:18:04

Dr. Kathryn Rooth

But maybe, you know, saying, I love that you love taking care of children with Down's syndrome and then explain why that makes you cringe, because I honestly have no idea why that would make you cringe. I love.

01:17:18:04 - 01:17:43:08

Erin Croyle

This. This is so interesting. So I've mellowed out a little bit because I understand why go out and. No, no, no. So I've mellowed out because I've had to because there is so much in the world that is just so painful that I see happen to people with disabilities or set about. And I think I think that I pick my battles.

01:17:43:10 - 01:18:07:00

Erin Croyle

That's kind of what it is. So if a doctor were to use MMR, like, for example, one time a therapist was talking about how hard it was years ago, loved this therapist and used the term m r a couple of times and I was just like, I wanted to correct them. But I also like, I just I'm so tired.

01:18:07:02 - 01:18:29:15

Erin Croyle

Right, right. But now, at this point in the journey, I think that I kind of let Down's syndrome kid go or Down's syndrome patient. But if it's the R word I want and I focus on advocating for my child's health rather than all of the semantics, because I feel like sometimes we get so caught up in semantics that we can't see the forest for the trees.

01:18:29:21 - 01:18:54:07

Erin Croyle

True. I mean, but I also feel like to say Down syndrome patients. So I think with that in why a lot of parents are touchy is because when we say person first, so many people see Down's syndrome and don't see the person. And so when you say Down's syndrome patients, it feels like you're saying, you know, they're all the same, which I know you're not.

01:18:54:08 - 01:19:05:15

Erin Croyle

Right, but it's just the constant barrage of ableism that we see where it just feels like people just see the disability and not the person.

01:19:05:17 - 01:19:16:01

Dr. Kathryn Rooth

So in the medical world, though, if I said I take care of it, so is it I take care of patients with Down's syndrome is better than I take care of Down's syndrome patients.

01:19:16:02 - 01:19:18:04

Erin Croyle

Yeah, it's something that simple.

01:19:18:06 - 01:19:28:00

Dr. Kathryn Rooth

Yeah. I mean, to me that that's that's very similar and pretty much the same as saying I take care of cancer patients. I take care of patients with cancer.

01:19:28:02 - 01:19:46:21

Erin Croyle

This is the thing. I feel like we need to have more conversations like this so we don't get stuck in being pissed off about something that is not intended to be demeaning in any way, shape or form. But it's hard because we are constantly dealing with.

01:19:46:23 - 01:19:48:06

Dr. Kathryn Rooth

A lot of ignorant people.

01:19:48:09 - 01:19:49:06

Erin Croyle

Yes.

01:19:49:08 - 01:20:12:16

Dr. Kathryn Rooth

Yeah. And I mean, I'm always correcting people in the health field always and will continue to when they use AMA. And I think every health care professional that knows the correct terminology should do the same thing. It's our responsibility to teach our fellow health care professionals the correct terminology in terms of patients with Down's syndrome and Down's syndrome patients.

01:20:12:16 - 01:20:35:05

Dr. Kathryn Rooth

I see now how you word it, how it does affect you. In my medical brain, when I hear Down's syndrome, I start to think of all the medical issues that go along with somebody that has Down syndrome. I'm not thinking I'm not thinking that this is not a person. You know what I mean? It's just I'm automatically starting to go down.

01:20:35:07 - 01:20:38:17

Dr. Kathryn Rooth

Down's syndrome, medical issues.

01:20:38:19 - 01:20:44:05

Erin Croyle

Right? Trisomy 21, three copies of that chromosome and how that affects the body, the anatomy.

01:20:44:07 - 01:21:04:04

Dr. Kathryn Rooth

So I also they're creating a story for me when they're calling me. I have a Down's syndrome patient with this. You know, I'm already thinking, okay, that their immune system is not the typical immune system, their anatomy, if they ever need to get intubated. It is also not the same as an average person. I don't even the typical person a non down syndrome person.

01:21:04:04 - 01:21:08:00

Dr. Kathryn Rooth

And messing this up right now, I'm getting nervous and.

01:21:08:02 - 01:21:31:01

Erin Croyle

What this is but this so I don't you know I don't and I want to leave this in so let's keep going because anyone listening I do edit these podcasts. Yeah it's important to cut out some of the stuff, but these are the conversations that people are afraid to have, and I think we forget to think of intentions.

01:21:31:03 - 01:21:40:22

Erin Croyle

Intentions are good, and sometimes we get so caught up in the semantics. Yeah. That you're thinking clinically.

01:21:40:24 - 01:21:42:02

Dr. Kathryn Rooth

Right?

01:21:42:04 - 01:21:59:20

Erin Croyle

And so adding a preposition doesn't really matter, does it? When you're thinking clinically, whereas parents are coming in. And in the regular world we don't describe Bob is a diabetic man like we don't use that.

01:21:59:22 - 01:22:21:19

Dr. Kathryn Rooth

Right? So if somebody called me and said, I'm seeing a colon cancer patient, you know, with this, it usually doesn't start off as I'm seeing a patient with colon cancer. That is how they usually say it. So you're right that we are saying it wrong when we say I'm seeing a Down's syndrome patient, I'm seeing a patient with Down's syndrome with this.

01:22:21:21 - 01:22:23:07

Dr. Kathryn Rooth

Right.

01:22:23:09 - 01:22:39:10

Erin Croyle

I don't know. I have to kind of wonder and if we were really going on a tangent here, but again, I love this. You have to kind of wonder because colon cancer ideally will be cured, whereas Down's Syndrome is part of that person forever. Cerebral palsy is part of that person forever.

01:22:39:12 - 01:22:58:11

Dr. Kathryn Rooth

So yeah, but in the medical world you're saying what is relevant to the situation in the moment, right? And the answer is relevant in the situation in that moment with that person. Down's syndrome will always be relevant to that person in the medical world.

01:22:58:13 - 01:23:10:03

Erin Croyle

Yeah. It sounds like there's not really an answer except for maybe just trying to offer each other a little more grace when we have conversations.

01:23:10:05 - 01:23:33:18

Dr. Kathryn Rooth

Yeah, and I. I also want to recognize, too, like, we're in this post-pandemic make health care world where everyone is burned out and short staffed and overwhelmed. And I think people who work in the health care field want to say it correctly and do the right thing. That's why they are in the health care world. And a lot of it is just because we don't know any better or no one has told us, though, what you're not saying.

01:23:33:18 - 01:23:50:02

Dr. Kathryn Rooth

It correctly. And so we need parents to kindly educate us because we are learning from you, Erin, You know, I text you all the time I had this situation. How should I have handled this? Because I want to do it correctly.

01:23:50:04 - 01:24:01:06

Erin Croyle

Right. It's interesting, though, I think as parents and probably as doctors, am I right in that the way that our insurance systems work, you're really only supposed to see a patient for about 15 minutes.

01:24:01:08 - 01:24:02:00

Dr. Kathryn Rooth

Correct.

01:24:02:02 - 01:24:26:15

Erin Croyle

Okay. So in that 15 minutes, do I want to spend that time talking about my child's medical issues or do we want to get caught into explaining things that matter but really aren't pertinent to what's going on? I mean, especially as parents in that short amount of time. I mean, we need to discuss medical issues. I don't really want to get into a debate about person for disability pride.

01:24:26:17 - 01:24:33:22

Dr. Kathryn Rooth

You're absolutely right. And honestly, this is the first time I've heard of Disability Pride and I love it. I've never heard that terminology.

01:24:33:24 - 01:25:01:02

Erin Croyle

Well, it's the beauty of being part of this work and being so heavily involved is you get to learn about this and and what I love sometimes is I really try to push the boundaries and my son is disabled and my peers with disabilities have really taught me like disability pride. There's nothing wrong with saying I'm disabled. It is part of the human condition, is part of who we are.

01:25:01:04 - 01:25:03:07

Erin Croyle

Why are we trying to hide it?

01:25:03:09 - 01:25:24:21

Dr. Kathryn Rooth

Yeah, no, I absolutely agree. I'm kind of backtracking. But going back to the medical appointments, I will say doctors have their agenda of what they want to address. Right. They want to make sure your blood pressure is under control. They want to make sure the weight they have certain metrics that they want to address. And you're coming in with your own agenda of what things that you want to have answers to.

01:25:24:23 - 01:25:47:20

Dr. Kathryn Rooth

So I would recommend especially, you know, parents with kids with disabilities because it is overwhelming. You get sidetracked, you get distracted, you're sleep deprived is right down. You know, at least three things that you have questions, your top three things that you have questions about so that you don't forget because our doctor, like you said, as 15 minutes, they're probably already behind.

01:25:47:22 - 01:26:09:04

Dr. Kathryn Rooth

You've been probably waiting forever, so you're already annoyed and they're rushing around. So they want to make sure, okay, everything is good. Okay, good. Check, vaccines check. And you're like, wait, I have these questions that I need to have addressed. So coming in with your questions written down, I do that. And I'm a medical professional because I don't want to forget because they have their own agenda that they want to talk to you about.

01:26:09:06 - 01:26:25:09

Erin Croyle

Yeah, I have to write it down, too. And I utilize my chart a lot because I have to, because there's just things that pop up in between appointments or I know that I'll forget. So I message ahead of time, things like that, to make sure that we cover all the bases.

01:26:25:11 - 01:26:45:05

Dr. Kathryn Rooth

And it's good. I mean, the portals are very overwhelming, right? If you have more than one kid and you have three different portals with three different passwords for just one doctor, and then you add specialists for multiple specialists, and then that's like eight portals for one kid, you know, and that's just the medical side. You're not even talking the academic side.

01:26:45:05 - 01:26:47:22

Dr. Kathryn Rooth

I mean, it's it's a lot.

01:26:47:24 - 01:27:10:03

Erin Croyle

It is a lot. You're right. My son has I don't even know how many specialists right now. It's almost a dozen, I think. Thankfully, the my charts are kind of related and interlinked aside from the Nutrition's office. But it's really hard. And then you're dealing with as they get older, you have to get a proxy to access their my chart.

01:27:10:03 - 01:27:20:08

Erin Croyle

Once they're a teenager. It's so much work. I mean, do you have any recommendations for families to streamline any of this?

01:27:20:18 - 01:27:43:07

Dr. Kathryn Rooth

gosh, Erin, I wish I did. You know, keeping track in your phone as some sort of notebook, having all your passwords someplace. You know, really, you got to find a main hub, a pediatrician that's on it. Right. And that's going to help you navigate the health care system and kind of be your main hub of where you're going out.

01:27:43:08 - 01:28:11:23

Dr. Kathryn Rooth

But really, it's a daunting task. I'm not a very organized person. And so putting it in your phone, putting it in a notebook, setting, it's cyber. You know, you're always going to have access to it, bringing it to every single appointment. So you have a list, a running list of what's been going on. You have your questions in advance, having separate notebooks for different specialists, you know, or bringing all the notebooks at this pulmonologist said to me about this because the cardiologist says it's the lungs and the pulmonologist says it's the heart.

01:28:11:23 - 01:28:16:00

Dr. Kathryn Rooth

But this, you know, so you have all the information with you so you're prepared.

01:28:16:02 - 01:28:37:03

Erin Croyle

Another parent, I know whose son has had a lifetime of just so much keeps kind of a one pager and updates it that has every medical condition and current medications that can be in a document that can be easily emailed or printed or whatever, because everyone seems to need that information, right?

01:28:37:03 - 01:28:37:13

Dr. Kathryn Rooth

Yeah.

01:28:37:18 - 01:28:38:08

Erin Croyle

List of.

01:28:38:10 - 01:28:57:13

Dr. Kathryn Rooth

Patients. List of medical problems, List of surgeries. Lists of specialists. When the surgeries were a list of allergies, having that in a document and having it saved, presenting it and just giving them the copy because they're always going to ask the same questions what medications you're on, you know, any new allergies, you know, so you have it already.

01:28:57:15 - 01:29:32:07

Erin Croyle

And then to I mean, this is morbid, but I, I handle most of my son's disability related stuff, which is practically a full time job between community based living, school medical stuff and so on. But what happens if something happens to me? That stuff that's in my brain is is just there. And so I think those documents are important to keep on a shared drive and and make sure the passwords are somewhere where whoever your co caregiver would be has it.

01:29:32:08 - 01:29:34:13

Erin Croyle

It's so important.

01:29:34:15 - 01:29:40:11

Dr. Kathryn Rooth

Yeah I agree. Yeah. And it puts a lot of responsibility on the siblings too.

01:29:40:13 - 01:29:42:12

Erin Croyle

It is. I feel like that.

01:29:42:14 - 01:29:48:09

Dr. Kathryn Rooth

That is a whole other podcast for sure. Yeah, I agree.

01:29:48:11 - 01:30:22:19

Erin Croyle

You know, Kathryn, it's funny, I consider myself to be a pretty tenacious person. As I mentioned before, I had a hard time kind of navigating, figuring out what advice to take and when to find a new doctor or what specialists to find. And I remember when my son was way younger, he would get pneumonia and it was so bad he would be hospitalized and it would happen like he would be sick all year and he would have like two weeks right before his birthday, where he would finally have his lungs clear and be okay.

01:30:22:19 - 01:30:45:07

Erin Croyle

And then I swear, every year, right on or right before his birthday, he'd get really sick again and we'd call it pneumonia Watch. And I got to a point where I really likes my son's pulmonologist, but I went in there. I mean, he'd be on albuterol and duodenum and round the clock breathing treatments and two antibiotics at a time and steroids.

01:30:45:09 - 01:31:10:08

Erin Croyle

And he said, listen, I am done treating this. What can we do to prevent this? And it really it still shocks me that I had to ask that question. And by asking that question though, the doctor then said, you know what, we can check his IgG levels. And it turned out that he had deficiencies in his immune system.

01:31:10:14 - 01:31:43:03

Erin Croyle

And by getting the infusions right, we've been managing that for many years now. And in that time we're learning more about how the extra copy of the 21st chromosome impacts the immune system and can make you go a little haywire. And we're still kind of on the cutting edge of learning that. But at any rate, I think it's really important for people to know that you really have to fight and you it doesn't have to be a fight, but you have to collaborate.

01:31:43:05 - 01:31:58:16

Erin Croyle

And if your medical team isn't willing to collaborate, you need to find new people. And your experience, is that what you see as well?

01:31:58:18 - 01:32:17:19

Dr. Kathryn Rooth

So yeah, he's coming in and he's sick, right? So our job is we want to make him feel better, more in the moment of a can. Acute illness, tunnel vision. Let's make him better. And maybe this is the first time I'm seeing this patient and there's a lot of providers that rotate in, so they're not doing this chart review to look back.

01:32:17:19 - 01:32:36:12

Dr. Kathryn Rooth

Wow. Every three months this kid gets pneumonia, you know, and he only comes in when he's sick because we only have a 1050 minute time slot. We don't have a lot of time to do a chart review. So you're seeing a new person, same thing, antibiotics every three months, every three months. And you're tired, you're exhausted. You're not thinking, I'm going to go there when he's.

01:32:36:12 - 01:33:00:22

Dr. Kathryn Rooth

Well, because I'm there all the time when he's sick. So amazing that you did that and you ask that question because you kind of took them out of their tunnel vision and allowed them to take a step back and say, yeah, like, let's let's figure this out. But that takes more time, right? And most of the doctors don't have that time because you're in a very constricted timeslot to address the acute illness.

01:33:00:24 - 01:33:24:07

Dr. Kathryn Rooth

They're not really looking to be proactive when they have to be reactive in that visit. So going back to the go see your specialists when you're not sick to talk about these things, you know, to get on the same page of what can I do to prevent this from happening again, What do I need to do to keep them from continually getting sick?

01:33:24:09 - 01:33:28:11

Erin Croyle

Yeah. And do you find that most doctors are willing to have those conversations?

01:33:28:13 - 01:33:41:11

Dr. Kathryn Rooth

Yeah, I think so. I think they may not have the answers. They may not know, right? I mean, why? How do I stop getting strep throat all the time? A basic illness? I don't think there's really anything other than basic hygiene.

01:33:41:13 - 01:34:05:04

Erin Croyle

Yeah. I think it's important to note for families and parents and caregivers that might be listening, you know, there are resources out there to help you navigate this. So the Center for Family Involvement, we have family navigators that we're not going to tell you what doctor to go to, but will reassure you that finding a second opinion is important.

01:34:05:04 - 01:34:24:15

Erin Croyle

And we have 1 to 1 support where you can go over these things. And I think, Kathryn, you mentioned really collaborating with your pediatrician and finding one that really knows about developmental intellectual disabilities, but also maybe doesn't but cares enough to do the work with.

01:34:24:15 - 01:34:49:15

Dr. Kathryn Rooth

You agree? Yeah. Even if it's related to a specialty that they may not have, you know, they sent you to you can still send them a message to collaborate. This is what the specialist told me. Do you agree with this? Does this make sense or I'm questioning it because of this? I mean, that is what your pediatrician is there for, to to support you and helping you make these decisions that the specialist is suggesting.

01:34:49:16 - 01:35:05:02

Erin Croyle

Yeah. And they need to be aware of things that are happening with those specialists. And I think that's where my chart kind of comes in handy to just send updates when you get updates so they can update the chart even between your visits, right?

01:35:05:03 - 01:35:06:19

Dr. Kathryn Rooth

Right. Yeah.

01:35:06:21 - 01:35:21:02

Erin Croyle

I guess I guess my last question for you would be, I know your career is kind of evolving and changing along with our medical systems, which are, as everyone knows, super flawed here in the United States. But what would your dream job be?

01:35:21:10 - 01:35:50:00

Dr. Kathryn Rooth

gosh. And so I love taking care of the most vulnerable. So if there was a way to take care of adults and children with developmental disabilities, the geriatric population and the dying population, in my mind, those are the most vulnerable people that need the most advocacy. And if I could create a clinic or a program that supported those people, that would be my thing.

01:35:50:02 - 01:35:51:13

Dr. Kathryn Rooth

I would love that.

01:35:51:15 - 01:35:52:06

Erin Croyle

I can tell.

01:35:52:06 - 01:35:53:17

Dr. Kathryn Rooth

You that. I would love that.

01:35:53:17 - 01:36:27:01

Erin Croyle

And I don't know anyone within my disability parenting group, if you will, that would not love that. My gosh, I maybe maybe someone's listening here and can help make that a reality because I feel like every state, every region needs one of those. We really need more effort of really caring and really being curious about our chromosomes are neurodiversity.

01:36:27:03 - 01:36:53:02

Erin Croyle

Our genetic makeup impacts our overall health because I think that that's been left behind. And we're just starting to figure out that just because someone has an intellectual disability doesn't mean that that is what is causing a behavior or an illness or for them to shut down. It's it's it's so much deeper than what our eyes see, if you will.

01:36:53:03 - 01:37:11:20

Dr. Kathryn Rooth

Yeah. Agree. And I would say to the parents that are listening to keep advocating keep correcting us and keep educating us because we need to learn and we need to hear your stories and we need to understand how to treat your children the way they should be treated.

01:37:11:22 - 01:37:31:14

Erin Croyle

Thank you. And I'll add anyone listening. Kathryn, you're going to be on again. I know we're going to address some of these things that we didn't get to go into more today. And I can't wait. So anyone who maybe has a topic they want us to cover in our future conversations, please do contact me and the information do that is in my show notes.

01:37:31:14 - 01:37:33:06

Erin Croyle

So thank you.

01:37:33:08 - 01:37:40:13

Dr. Kathryn Rooth

Thanks, Erin.

01:37:40:15 - 01:38:04:11

Erin Croyle

And thank you listeners for joining us. Please rate review, share and subscribe to this podcast of ours and let me know what you want to learn more about whether it's an issue for me and my friend Dr. Kathryn Rooth to explore or something else entirely different. Send it my way. There's no shortage of topics to cover, so feel free to add on to my long list.

01:38:04:13 - 01:38:11:01

Erin Croyle

This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.

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