Episode 332: Anand & Amanda Murthy: Advocacy and Hope in the Face of Infantile Spasms

This week, we share Rachel’s interview with Anand (@anandmurthy) and Amanda Murthy (@amandajanemurthy)! Anand and Amanda’s son, Maverick, is affected by infantile spasms, a rare form of epilepsy.  Maverick has undergone multiple brain surgeries and faced numerous challenges related to his condition. Anand and Amanda share about their journey to raise awareness about infantile spasms, the importance of collaboration among healthcare providers, the need for comprehensive support systems for families of children with complex medical needs, and more!

 

Key Ideas this Week:

 

The Complexity of Infantile Spasms Anand and Amanda share the difficulty in diagnosing and treating their son Maverick's condition, infantile spasms, a rare form of epilepsy. They discuss the challenges of working with a medical system that often lacks awareness of infantile spasms and the need for immediate intervention, such as EEGs, to properly diagnose and manage it.

 

The Importance of Advocacy and Persistence: The Murthys emphasize the importance of advocating for their child in the medical system, navigating insurance challenges, and ensuring Maverick receives appropriate care. They discuss how parents need to be assertive with insurance companies and sometimes even with medical professionals to secure necessary treatments.

 

Collaboration in Therapy and AAC: The interview highlighted the significance of a multidisciplinary approach to Maverick’s therapy, including speech, occupational, and physical therapy, as well as ABA for autism. They also touched on the challenges of using Augmentative and Alternative Communication (AAC) for a child with complex needs and the importance of having a cohesive and collaborative team to support his progress.

Transcript of the Episode

Please Note: This transcript was generated using speech recognition & AI tools; it may contain some grammatical and/or spelling errors.

 

00:00:08 Rachel Madel
Welcome to Talking with Tech. I'm your host, Rachel Madel, joined, always, by Chris Bugaj. Hey, Chris.

00:00:14 Chris Bugaj
All right, Rachel, here's what I got for you this week. So, you know, I get to travel around sometimes and do presentations. I know you do, too. Sometimes we get to do them together. Thank you. If you've had us before, I'm sure we've had a wonderful time. We've never had a bad time doing it. Right. Something that I think I've learned by traveling around is that different plate people and different organizations and different school districts are in different places. Right? I mean, obviously physically different places, but where they are in their technology journey or their inclusive journey or where they are with AAC, you know, like, for instance, how often have you and I talked about core words on this podcast, right? We sort of have. We had to bring it in over the summer as an old episode because we don't talk about it anymore. We sort of assume that most people know about core words, right? And there's many things like that, strategies like that, that. Or if it's not a strategy, just something in our sphere that I now sort of take for granted because, you know, I got some gray in this beard, right? And I realized, oh, doesn't everybody know this? And I recently had one of those experiences where it was like, oh, oh, no. Okay, I have to take a step back because I just assumed. So let me explain to. I was recently talking to a group of people, and I said, you know, like, when you have some text and you hit the text on a piece of paper, you can't hit a play button and have it read out loud. But when it's in an accessible version, you can hit a play button, and the text can be read out loud with a text to speech tool. And I could see this small group of people, their eyes sort of glazed over, and I was like, did I lose you? Do you know what text to speech is? And they're, like, shaking. People can't see me. You see them. They're sort of slowly shaking their head back and forth. I'm like, okay, well, text can be read out loud if it's in a certain format. You know, if you. If you take a picture of text, there's work that has to be done to convert it, but that can be done. But just in general, most texts, like online, on a website or whatever, you hit a play button and it can be text read out loud. They had not heard of that. And so then I start bringing up tools, and I show them like, read and write. Our school district has read and write for every kid. Anyone can have it so that they can have text allowed. You guys have chromebooks here? And they're like, yeah. I'm like, well, it's free. Like, that version of it is free, so any kid could have it. Have you heard of immersive reader? And they're like, again, no, Chris, what is immersive reader? I'm like, well, that's. Microsoft has partnered with different groups and different websites and different organizations, and it's all in the Microsoft tools. That also is their text to speech tool, and it does these other things as well. You and I have looked at some of that here on the podcast. You can go back and listen to some of the archives. Even not that long ago when I was showing you Microsoft Reader, remember, we made a little video that's on Patreon if people want to go see it. But that's. That a reading coach. Sorry, that's what I meant. Reading coach. Well, reading coach works with immersive reader. So, long story short, this is not talking about immersive reader or read and write for Google Chrome, whatever your text to speech tool is. I feel like if you're listening to this podcast right now and you don't know what your text to speech tool is, that is priority number one. Like, there is. So it is so useful to so many people to have your text read out loud to confirm that whatever you're reading with your eyes, you can confirm it with your ears, you know, assuming you have the ability to hear. And even if you don't, there's dual highlighting, so you can track along. So what dual highlighting is, is the back of the. As a word. As the text to speech is playing, a word is highlighted. And the dual part is the entire sentence is highlighted. So if you're tracking with your eyes, you're like, oh, here's where I am on the screen. My eyes are tracking along. And this is the sentence that I'm on, and this is the word that's being spoken out loud as it's spoken out loud, so I can track it. And even that has helped, even if you. If you do have a hearing impairment. So to me, it's like if someone said, what's the number one thing I need to change or have on my computers in an educational setting to. To make it more inclusive, but really just to help any kid learn anything, text to speech would be one of those things, which is why I was like this far into my career. I sort of make these like, everybody knows that, but I have to realize, no, everyone's in a different place in their journey. And so they're just hearing about it now. They're hearing about it for the first time. There's probably people listening to this podcast right now who are hearing about it for the first time. And that's all okay, because you're hearing about it, right? What's not okay is if you don't hear about it.

00:04:58 Rachel Madel
Yes. And I bet you there's some people out there listening who have heard about it who haven't actually tried it, because. I feel like for. And that was me for a while, right?  I was like, okay, yeah, text to speech speech. That sounds great. It is so immensely useful and powerful to students. I have to tell you, in my own clinical work, just having that visual with that auditory, we know that that combination can be really powerful for students. And I've seen such amazing things happen when we utilize those accessibility features. And I definitely recommend if you're the person who knows about text to speech who hasn't tried it, just dive in and start seeing what happens when you use it with your students. It's so, so powerful. And I agree, Chris. I feel like sometimes we're in this little assistive technology bubble, or like, everybody knows about these things, right? And everybody unfortunately doesn't.

00:06:00 Chris Bugaj
Yeah. I wonder how many places around the country and maybe other countries where there is someone might have the accommodation of text read out loud. And that to them, that means a human sitting next to them reading it out loud. And that feels like so, like, well, okay, maybe you're employing somebody that way, but also the person that you're reading to doesn't have as much autonomy if they had access to the, the software and if you taught them how to use that software.

00:06:32 Rachel Madel
Chris. Yes. I literally just probably six months ago, met a student who had a paraprofessional next to them all day, reading out loud for them. And I was just like, wait a second, wait a second. This student is a teenager now, and I saw him for an assistive technology consult, and I said, like, how would you like to be able to hear things read to you on your own without having someone read it? And, like, he was super excited. He loves cars. And I said, okay, he loves to go to the car museum. And then I worked on, like, okay, you can actually take a picture of this plaque and then have it read out loud. And so it's just like a perfect example of how one people, yes, take it verbatim, like, have text read out loud. It's like, we now have the technology to read it out loud, which, again, just gives individuals more autonomy and they can learn to become more independent in those endeavors. And the other thing I'll mention, actually, Chris, which is fun, it's always fun when you can introduce some type of accessibility feature to your friends or your family. And I was in Guatemala, and we were in a situation where we were at this. I think we're at a museum or something, and it was like, we have some cursory knowledge of Spanish, but there were some words that we didn't understand. Hold on, guys. And I take a picture on my iPhone, and then I tap the text, and then, of course, it highlights it, and people are like, whoa, I didn't even know you could do that. I was like, just wait. And then I translated it, and, you know, this took a matter of seconds to do this. And, you know, I could have had it read out loud. But it's just like, it's really fun when you can introduce something like this to friends, especially in a situation where everyone's like, well, I guess we just can't understand. I'm like, no, no, no, we can. And so there's. It's really fun when things like that pop up in your everyday life and you can kind of share some of those accessibility features with people.

00:08:38 Chris Bugaj
Yeah, for sure. For sure. When I was leaving this experience with these people and I got in my car and I was realizing, what are some things in my life that I just haven't experienced yet? Like, they have not experienced text to speech yet. I introduced it to them just like you introduced to your friends there, the translate feature and taking pictures and having it, you know, the ar, where it will, the augmented reality will convert the text from one language to another. And I just realized, what are some things that are in my future that I'm going to learn more about? Something that occurred to me is like, we have these life experiences. I'll give you a quick example. My wife, her mother has epilepsy, and so she grew up with understanding seizures and how to help control or mitigate or otherwise live with seizures and how to communicate it where I didn't. Right? So as I got, you know, closer with my wife, when we were dating and meeting her parents, suddenly I knew more. But I didn't know more before then. Right. And I'm just very curious, like, what's the next thing I'm going to learn? Right? Like, it's so exciting that way.

00:09:52 Rachel Madel
Chris, that leads us perfectly into our interview today. I had the pleasure of having Anand and Amanda Murthy, who actually are clients of mine. They've been in my practice for a couple years now, but they are coming onto the podcast to talk all about infantile spasms. Their son Maverick has had such a hard journey in the area of seizures, and he's been through countless medical trials and brain surgeries. And they come on as advocates to kind of just share and empower about infantile spasms, specifically because they have learned a lot. They have a really amazing doctor that they work with in LA and of course, then talk all about their journey with their son Maverick and AAC and all the things. So I'm really excited to share the interview that I did with Anand and Amanda Murthy.

00:10:55 Lance McLemore
This October, joined impact voices at the AAC community in Arlington, Virginia. Hello, I am Lance McLemore, a board member of Impact Voices. Don't miss our second live AAC hangout in celebration at the Crystal Gateway Marriott on October 17 and 18th. Our theme is building futures together to empower AAC users. Connect policymakers, employers, and each other. Hear from AAC users who are shaping the future, explore our challenges and opportunities, and discover how we we can all work together for a more inclusive world. Register day@impactvoices.org dot we can't wait to see you. And I relive 2024.

00:11:53 Rachel Madel
Welcome to talking with Tech.  I'm your host, Rachel Madel, joined today by Amanda and Anand Murthy.  You guys, I'm so excited to have you here. This podcast recording has been a long time in the making and I'm really excited to dive in. Can you start off by just explaining a little bit about who you are and I guess how we know each other? Because we know each other. Yeah, no, totally.

00:12:12 Anand Murthy
I think you're obviously very involved with our son Maverick in speech and actually just kind of quarterbacking a lot of his services, which we're very grateful for. So our son Maverick. So Amanda and I are from LA, we live in LA, and I, our son Maverick, at six months was diagnosed with a condition called infantile spasms, which is a rare form of epilepsy. So I believe there's 2000 kids a year that are diagnosed with it, and it's a pretty devastating condition. And there aren't a lot of treatments. So a handful of treatments work for some kids. Our son Maverick has had three brain surgeries. He's had periods of seizure freedom. We thought we were in a good place, and then the brainwaves started going haywire again, even though, knock on wood, we haven't seen identifiable seizures, but, yeah, it's a journey, and you've helped us a ton. I think we met during COVID so I think it was like 2020 or 21 or something like that. You know, we have, like, a team of, I think, 15 people that work with our son to just try to make sure he has the best life that he can live. And, you know, he's five and a half, and he's made a lot of progress, but we have a long road ahead, so I guess that's the way to kind of set it up.

00:13:50 Rachel Madel
Yeah, I mean, I. Yeah, we did meet a couple years ago now, and I. Maverick has been such a joy in a lot of ways to work with and also such a puzzle. I think it's really hard when you're working with any child that has neurological activity in the form of seizures where we're building up skills, and then all of a sudden we have some type of seizure activity that we are losing some of those skills. And so I feel like we've definitely had that kind of up and down journey together for those. Many of our listeners are practitioners, educators, parents, and many of us have experience working with children that have epilepsy and seizure disorders. Can you go into a little bit more detail around infantile spasms and how it might be different than other seizure disorders?

00:14:42 Amanda Murthy
Okay, so, yeah, infantile spasms usually typically starts between six to ten months. They're a little bit subtle, so it's typically like a head drop or an eye roll or both together. They sometimes look with their hands kind of going up in the air. I'm sort of startled. They are so young, the kids, so oftentimes, like parents, especially new parents, like we were. If you haven't had a child before, you know you aren't well versed in this or haven't seen it on the Internet or Instagram or whatever, you don't know what it is. So it's pretty much looks like sort of like an infant, like, because infants can kind of just make weird faces and weird. Like, my daughter, who's neurotypical, has done it multiple times, which scared the crap out of me, but she basically, I took a video, and I showed my neurology or pediatrician, and he was able to diagnose it, like, pretty quickly because he had experience with it. The unfortunate situation is many pediatricians don't have any sort of experience with it, even in medical school. And so it's really, really slight and really hard diagnose. Unless you catch it on a video, you play it over and over again. And you really kind of push as a parent. So we didn't have that experience. But there's many people that we've connected with on Instagram and, you know, friends of the friends of friends who've connected us with their kids who have intelligence or other forms of epilepsy, and there's many horror stories where they could go undiagnosed and the parents actually have to be like, no, something is wrong. It's been four months and this isn't stopping. Thankfully, we weren't in that situation, but it's a very rare condition, kind of in quotation marks, but it also does affect, Anand said, 2000 kids a year. So it's not, it's not small, it's not insignificant at all by any means.

00:16:50 Rachel Madel
And explain a little bit about your experience with Maverick. How did you, it sounds like you. Captured it on video. You're like, this doesn't feel right. And then luckily your pediatrician had experience. Um, once you diagnose infantile spasms, then what happens?

00:17:05 Amanda Murthy
So, um, ours was pretty, like, I, it was pretty lucky slash, I don't know, it was pretty horrendous. But I took a video, a few of them, and he was, just, looked really scared. And so we had actually gone the day before to his regular checkup, I think it was a six month checkup. And I took a video and he had to come back because he had, I can't remember what it was. Maybe I had to get a shot. I don't know, he had to get one extra shot or something like that. And I went back and I was like, hey, can I just speak to my pediatrician just one more time? I just want to show him a really quick video. And I showed it to him and pretty immediately he put his hand on my shoulder, remember, very distinctly, and said, I'm going to call you tonight. Just, I'm going to call you tonight. And like, basically was like, it's okay, but like, I'm going to call you tonight. And so I walked home. I remember very vividly, like, pushing the stroller back home because we actually walked very close or lived very close to him and called on and was like, something is very, very wrong. I just, I could tell by the way he was responding my question, the video, like, I could see, like, he was stressed out. And I was like, no, no, I'm sure it's fine, it's fine. And then he actually did call us that night after Mav went to bed, probably like, whatever, 7 hours later, and said, you don't have to go to the emergency room right now, but you need to be there by tomorrow morning, basically, and you need to get him in immediately. And I think he has infidel spasms. And I, if you google it, it's like, oh, my God, it's, you know, death. It's, you know, it's, it's what we're dealing with. It's also is, you know, one course of steroids and they're fine. So the range is so incredibly vast that it's, it's, it's a very scary thing as a parent to dealt with, I guess, at that moment. But now, you know, we're so deep, it's like, it's weird looking back at that.

00:19:08 Anand Murthy
No, but I think to, part of your question what you do when you suspect seizure behavior is you have to get in and get an EEG immediately. And, you know, we were lucky that one of my close friends is like a very talented, like, doctor. And he was kind of our sounding board through this entire, to this day. So five years in and he was like, literally he called, like every neuro center in the country and was like, hey, you're in for a ride. Like, I'm just warning you, like, this is, you know, we don't, I don't know how it's going to kind of develop, but I. You better be prepared. And it was very good advice because you know how the last five years have been. So I think it was very helpful to kind of being told very bluntly, like, we don't know how to solve this yet.

00:20:15 Amanda Murthy
And I guess just one more thing to touch on is that if you do suspect infilespasms, you really have to push for an overnight EEG because they need that full data to sort of capture arson. Had hips arrhythmia. Andy had embedded. So hips arrhythmia is sort of like the background noise of his brain. It goes along with emtal spasms often, so his was easier to see. But often you need to actually catch a seizure on camera. So a lot of these parents I've also spoken to, like, oh, they'll go in for like a two hour EEG. They didn't see anything. They'll go in two months later and they're like, their kid's brain is completely, you know, crazy and wild.

00:20:58 Anand Murthy
So, like, I mean, there's a perfect example. This happened last week. One of my best friends, I haven't even told you, I'll keep the name out. His daughter had, like, fluttering eyes and it kept happening. And they got very concerned, so they went to Stanford neurology to, like, you know, see what happens. And I said, there's no way clinically you can find out if the brain is not working the way it's supposed to. You need an EEG. And I was like, even if there's no concern, go get an EEG. Your insurance is going to pay for it as long as a doctor prescribes it and just get it done and rule it out. Like, it's probably nothing, but if you guys are concerned, go get it done.

00:21:50 Rachel Madel
I feel like that's really good insight because oftentimes it's so easy. I feel like especially pediatricians are so quick to just be like, it's okay. Like, that's not a big deal. You know, in the field of speech language pathology, we're always a little frustrated with pediatricians because they're always like, it's fine. We'll just wait and see.

00:22:11 Rachel Madel
And then we miss valuable time. Obviously, in this situation, you know, it can be life threatening to not catch something like this. And so I think it's good insight to really push. If you think there's any type of, you know, abnormal neurological activity, push for that EEG.

00:22:26 Amanda Murthy
Absolutely. Yeah. Yeah.

00:22:29 Anand Murthy
That's the only way you can measure the brain. There's no other way. Like, you can go to a doctor's office and they're like, oh, it looks fine. We've had. We've had some instances with pretty senior people at a hospital that were like, oh, he looks fine, and he was not fine.

00:22:44 Amanda Murthy
Yeah, no.

00:22:47 Rachel Madel
So tell me a little bit about, you know, obviously, you guys have been in this journey for, what, five years now? Um, tell me a little bit about, you know, some of the. The insights that you've gleaned. Obviously, there's families out there listening who have children, who are medically, you know, complex, medically fragile, have all types of different diagnoses. Um, you guys are very familiar with the medical system and surgeries and all these things. Um, curious what you've kind of learned along the way and things, other things that would be helpful for families to advocate for, for educators to kind of take note of. I'm really curious about your kind of journey and things that you've learned.

00:23:30 Amanda Murthy
Yeah. Would. Do you want to start on or do you want me?

00:23:33 Anand Murthy
Sure, yeah, no, I could start. I think the most important thing that I've learned in the last five years is we were lucky that we had outside people that were able to counsel us. Like how you mentioned, like, a very talented doctor that helped me and Amanda guide us through and basically vet every diagnosis and every treatment that we felt confident that we were getting the best care. So that's pretty unique, I think.

00:24:07 Amanda Murthy
And just to jump in there, he was able to vet, because he has such a great network, he was able to vet at all the other neurological hubs across America that he would really rely on a friend of a friend's doctor who works here. He was able to check across hospitals across the country. So that was very valuable.

00:24:30 Anand Murthy
Yeah, because he basically talked to everyone around the country, Boston, Stanford, I think, whatever, the hospital in Upenn or whatever. And he basically said, when it comes to infantile spasms, no one's going to override what Doctor Hussein says. And if Doctor Hussein says this, no one's going to say, do something different. And if he's recommending this surgery, they were like, he's the guy. So we're very fortunate that we got to the guy and very fortunate that.

00:25:05 Amanda Murthy
We live a few miles away from him. I said this in another podcast, but we would have definitely 100% moved. Like, if we had to, we would have taken him to whoever we felt most confident with.

00:25:17 Anand Murthy
But the other thing that I've learned is how difficult insurances for getting things approved and how difficult that whole process is. And you just kind of have to be an asshole and just, just talk your shit and get it done because these things are so expensive. They're so insanely like. And insurance companies, so insurance companies hate Maverick, right? He all, like, the three of us, we're normal, like, patients of, you know, the healthcare system, they love us. They get to make all the money off our premiums. Maverick is their enemy because that is who they actually have to spend money on. And you have to just basically, you have to be really strong with these insurance companies and like, like, even getting medications approved, like, I deal with this every month.

00:26:24 Amanda Murthy
It's like, there's been every month for medications. But even, like, in terms of, like, other situations, there's been, I'm not gonna say which doctors, but there's been multiple doctors who have reached out and said, well, if you don't want to do x, y, and z, which is very, like, minimal thing, then he might have to have another brain surgery. So do you want to do that instead? Like, they kind of have to talk to them in that way. And we've had many, many denials. Many. Yeah, it's, it's crazy, for sure.

00:26:58 Rachel Madel
So, you know, what I'm hearing as a strategy is like, you know, having your doctors kind of advocate on your behalf, too, and pushing 100%.

00:27:08 Amanda Murthy
Yeah. You need to have your doctors on the same, on the same page. You, I mean, especially in, like, I feel like if you have a good doctor, they'll always kind of be on your same page and they'll always kind of, like, advocate for your kids. And we're lucky enough to have those. But if you don't have that doctor, then I would say, honestly find one who is willing to just kind of go to bat because it's a lot for them, too. I mean, he's one of hundreds of patients that these guys have. And all of our doctors are, and all of our therapists are very, like, willing to kind of, you know, fight for him because they care. And they, and we're very lucky in that regard because I think that you've heard some other stories where they're just like, oh, no, it was denied. Like, you can handle it yourself, right? Or you know something and you can't. You just can't.

00:27:57 Anand Murthy
And the other big takeaway, I will say that just from being in the epilepsy community that we are in now, it's really easy to get comfortable with the first doctor you see. But for whatever condition your kid has, you need to find the expert. And the first doctor may tell you things because, I mean, for example, Doctor Hussein, we can say this. He's like, I'm very aggressive. He goes, if you went to another neuro center, they would say, no seizures, no new treatment. And he's like, I don't like the brainwaves and I need to give new treatment. And we had this conversation like two.

00:28:40 Amanda Murthy
Weeks ago, and, well, because he 100% will have a seizure if we don't treat it as kind of like his theory.

00:28:49 Anand Murthy
But the point is, he said other doctors would say we don't need to do anything.

00:28:56 Rachel Madel
Yeah, that's interesting. I think that you're kind of hitting on a point here, which is any practitioner has a disposition for the level of intensity that they kind of recommend. Some are more conservative, some are more liberal, and like, oh, it's fine. And so I feel like figuring out what resonates with you and also in a situation where it's so life threatening in a lot of ways and so serious, making sure that your doctor is taking it as seriously as, you know, they should.

00:29:31 Amanda Murthy
That said, really well. And I actually will kind of add on to that. Like, we also are the parents, like, who want the home run. We want to, like, you know, this and that. Like, there are people who don't feel comfortable doing that. There's a lot of parents who would never have done surgeries, you know? So, like, you have to respect everyone's decision and, like, whatever doctor vibes with you, 100%. But we personally, both, thankfully, because also, parents can be on different sides.

00:29:59 Rachel Madel
Totally.

00:30:00 Amanda Murthy
I've heard many stories where one parent is like, let's get a surgery. That a parent's like, absolutely not. So, you know, we're fortunate that all three of us, like, you know, his neurological team sort of are on the same page. But, you know, if not, that could cause a lot of issues. And you have to just find someone that, like you, who does the things that you trust in your gut also as parents, you know? So I respect that as well. Like, if you don't choose to do it our way, 100%, get it. But, like, it works for us.

00:30:34 Rachel Madel
Amanda, I'm curious what your kind of takeaways in this journey has been.

00:30:41 Amanda Murthy
Oof. Life is. Throws you a lot of curveballs. I always knew that. I didn't know. Throw me this big of one. I also feel I don't. Thankfully, we have a disorder that does not affect his personality and his happiness, so I'm very, very grateful for that. He is probably one of the happiest kids I know, and so I'm super, super grateful for that aspect of it. I mean, just an antidote, I guess. I was speaking to another mom, obviously not going to mention names, but she has two kids, and one is severely. Has pretty severe epilepsy, some infill spasms, some other things going on, basically, like, also same thing. She's like, how is this kid, like, just the happiest kid I've ever seen? It's like, it's so beautiful. It's so amazing. And her other kid, she's like, we've spent so much time, and I actually realized, like, oh, my God. My other kid is who I actually should be worried about because they're having, you know, some emotional issues. They're. They're having. They, like, they might need some therapy. Like, they seem, like, a little bit depressed. And it's like, I think kind of as a medical mom, trying to always make sure, since we have another sibling, especially me, and that mom just spoke about it, just kind of trying to also not only focus on your medical kid, trying to also spend a lot of time and emphasis on your other child, because they pick up on things way quicker and emotionally way quicker and. And just making sure that they're okay and happy. And thankfully, our daughter is, like, very happy as well, but, like, I wouldn't say happier than my son, who's like, you know, going through all this stuff, has to take all this medicine, has to go to eegs, has to go to an ivIg, has to do surgeries. Like, they're probably equally the same, you know? So I think it says a lot to, like, my son's strength, I guess. I'm incredibly proud of him.

00:32:59 Rachel Madel
I think you touched on a really important point of the sibling experience. When you have a child that has such complex needs and needs, all the therapy and all the doctor's appointments, it can feel really hard, I think, for a sibling, especially as the sibling gets older.

00:33:15 Rachel Madel
And I think there's a beauty to the experience because it teaches compassion and grace and about, you know, neurodiversity and, you know, all of these things. But I do, you know, understand how hard it can be as a sibling.

00:33:33 Amanda Murthy
I mean, even like her, I feel like we've. I've been told by a few, like, you know, of our school parents or friends, of our daughters or this and that, you know, just because of Mav's condition, like, I feel like it's given, like, everyone else, like, such a eye opening experience in sort of the medical arena. So it's been. It's been nice. And Vivian is definitely also not like, if they're alone together, it's very different. But she had an experience the other day where someone was sort of throwing balls and kind of hurting my son, and she took him out. So I know that she. I know that she's going to be a serious protector.

00:34:15 Anand Murthy
She took the person that was throwing the balls and was protecting our.

00:34:24 Rachel Madel
That's so great. I want to transition a little bit to kind of your therapy journey. Obviously, this is a podcast about AAC. Obviously, that's why you guys got my name. We got started together.

00:34:36 Rachel Madel
I'll share just a little bit about the complexity of Maverick. He has not been an easy case clinically, and he has a lot of challenges with motor, with vision, with attention.

00:34:55 Rachel Madel
Having his body kind of do what he wants it to do has been a challenge. And so AAC has been quite a journey. We've trialed different systems.

00:35:04 Rachel Madel
We've changed the size, we've gone to vision specialists. We've kind of done a lot. You know, I'm pointing this out because I feel like sometimes in our community, we have this idea of, like, we do an assessment, we get an AAC device, we just, like, here we go. Let's do it. And it's not always so cut and dry, and I definitely have experienced that with Maverick. Even to this day, we're still kind of trying to tweak and adapt and shift based on kind of what he's showing. We've also had the experience of him kind of building up some skills and then us losing some of those skills, which I think is very reflective of, you know, children that have a diagnosis of epilepsy. And so I'm just curious, from your side of things, you know, what has your experience been with therapists? I know you have a huge team, and I'm so grateful to be a part of it and have been a part of it for a long time. But, you know, for parents out there who are listening, you know, what has, what have you learned as far as the therapy journey and finding the right people to kind of support your son?

00:36:09 Anand Murthy
I would say how holistically everything matters. So speech, PT, ot, obviously, Aba, because he's diagnosed with autism as well, how they all intertwine and how you need all of them to work together to basically get progressed. And I would have never known this if we just had Vivian and she just kind of, like, went on her way and just became a normal, developed kid. But when you need help, they all intertwine, and it's so clear to me that they all need to work together to basically kind of leverage each other off to get results for each other. Amanda, it's also.

00:37:01 Amanda Murthy
Yeah, I 100% agree. I think it's also really nice when they're able to bounce ideas off of each other. Like Ana was mentioning Aba, they're with him, you know, 40 hours a week, and so they're able to implement a lot of the goals. That speech, PT, ot, you know, even, like, our vision doctor, everything some other specialists need him to do, they're able to, like, be hands on with him and I, and they're great. And everyone on our team, thankfully, is great, but, you know, we've had some personalities that we've had to, like, weed out in the past, 100%, and it's. But it's really nice when everyone that you do get on a team with kind of works together and realize it's kind of the same thing. Like, you know, I was. I was speaking about the doctors. Like, everyone needs to be in it for the right reason. It's just like, you need to be on our team. You need to be going from Maverick and, like, kind of putting, you know, egos aside because there's also combative. Not combative, but, you know, different opinions, but it's also really conflicting opinions. And it's actually really nice to hear those, though, because you're like, oh, I didn't think about that way. And as a therapist, I think, you know, like, obviously, like, you and everyone on our team, honestly, sometimes if someone's like, no, I don't like that idea, then having a team that's able to say like, wow, okay, I'm going to change it. Like, that's really valuable because you're thinking about the kid and having team meetings, having team meetings as much as possible. And they like, I always am like, oh, my gosh, okay, we're gonna have an hour team meeting, and by the hour, 50 or 55 minutes in, I'm like, oh, my God, how are we gonna get through this? I feel like I could talk for like, you know, 3 hours. So it's really nice to just jump on the phone, jump on the zooms, be in constant communication, all the emails, whatever it is.

00:38:58 Anand Murthy
And I think it's also the other thing. Just like, parents just need to be honest with themselves about what their kids needs are because it's easy to be like, hey, you know, oh, my kid's fine, and if you're more honest with it, you can get the help better.

00:39:18 Rachel Madel
Totally. I think there's a lot of denial sometimes of where a child's at, and I don't discount that experience at all because I think it's really hard to accept when your child is not developing with a typical trajectory and what that looks like and what the ramifications are. But if we can't have an honest conversation about where a child's at, we're not able to fully come in and really help them get to where we want them to be. And so I think that's a good point. I also want to share that one of my favorite things about working with you guys as a family and just our team is that not every family understands the importance of collaboration and prioritizes it the way that you guys do. And I think that it makes all the difference in the world, especially when you're working with a child that has complex needs. Having those team meetings where everybody contributes through their own experience and lens helps us all understand this child in front of us in a very holistic way. And we're able to then in our sessions, start integrating all the different disciplines. And we just know that that's how our kids make progress, especially when learning becomes hard and we need so much repetition and exposure in order to learn new skills sometimes. So I feel like you guys have done a really good job of prioritizing that. And I just think it makes a huge difference when we're thinking about therapeutic outcomes.

00:40:53 Anand Murthy
Yeah, no, totally. I think we talked about this last week when we had our catch up. The term radical candorous is super important because everyone needs to kind of put their egos aside because we're all, if you're on the team for Maverick, all we care about is Maverick's progress. And if people have emotions, you know, on someone else conflicting with them, as a parent, I don't give a shit who's where, how are we going to get to the best possible outcome? And that's all that matters as parents.

00:41:33 Rachel Madel
And I think from the therapeutic side, I, you know, you guys know me, I'm like, I'm radically honest. And I feel like sometimes it's hard to, it's hard to say hard things sometimes. And sometimes as clinicians, we have to say hard things, and I think it's not always easy, and sometimes the conversations become a little uncomfortable. But I also think, you know, we have to give our honest opinions, and sometimes it makes those team meetings a little tricky to navigate and a little tense at times. But to your point, Anand, like, it's like we have to remember the focus is on Maverick. And that's our focus. That's what we care about. We want to make progress. And, you know, sometimes when we have conflicting opinions. To your point, Amanda, I think it opens up a beautiful discussion where we're able to, you know, make decisions and collaborate with each other. We're not always going to agree, but we can find ways to have these really healthy, honest conversations so that we can get to a really good place together.

00:42:36 Anand Murthy
Yeah, totally. I mentioned this last week, too, that Maverick is effectively a small business. And how would you run your business? You want to have the best outcome. So when you run a small business, you have to make tough decisions and you have to take emotion out of it.

00:42:54 Rachel Madel
No, it's such a good point. And I love that analogy.

00:42:57 Rachel Madel
I laughed real hard when I heard it last week.

00:43:00 Rachel Madel
And I'm like, you know what? You're right. That is, it's a small business. A little maverick is the base of the brand. So cute. Um, tell me a little bit about your experience with AAC. Just because we all know it's, it's not easy. Um, it's not easy for Maverick, it's not easy to implement. It's like, you know, we're spending so much time and energy trying to support communication. Um, I'm just curious what your your perspective, is there any, of course, lessons that you've learned, but also some of the challenges, like, it's nothing, it's not easy. And so just your kind of honest experience with having a child who has challenges with communication and is using AAC.

00:43:44 Amanda Murthy
I think definitely one of the biggest challenges was us figuring out his eyesight. I think figuring out the program and how big the icons could be, that was really tricky for us. Also, he has definitely a peripheral vision issue, which we knew from the beginning that for sure we didn't actually know it was on both sides until probably a year and a half ago. But that's just because of the resection of his brain. It automatically goes on both sides. But that was probably the trickiest, I think, in finding the right program. I mean, honestly, it's a ton of trial and error, I think with AAC and also, you know, figuring out if we need a key guard, figuring out how many icons on a page.

00:44:39 Chris Bugaj
I.

00:44:39 Amanda Murthy
Mean, it's also difficult. And then also, I think one aspect was difficult also is sort of your conversation with us when you were like, we need to really focus primarily on AAC. Like, we have to, like, kind of put a pause on, like, the actual verbalization speech. Like, not like, put a pause, but, you know, like, we can't focus on that during our 1 hour a day, you know, intense sessions. And that was kind of hard. That was hard for us, I think, because, you know, our. My greatest goal would be for him to, to speak, and he's gone through different phases of it, but if it's not coming out natural, then we have to give him a way to communicate as, you know, sort of like the way that you've phrased it. And that makes complete sense because he would be frustrated, he'll be angry, he'll be upset. I need him to be able to verbalize in some form, just not with his mouth, I guess.

00:45:42 Rachel Madel
Yeah, I mean, I feel like that's a perfect example of a hard conversation and never an easy one. It's so hard as a clinician because when we started, he was really little and we did see so much change. I circle back and it's like he's saying words, he's approximating, and then a couple months later, he's not. He's not really vocalizing at all anymore. And so we always hope that we can help a child communicate verbally if they're able to do that and they're showing progress. I've always been a big advocate of just supporting total communication for him in all the different modalities, especially when children are younger, just because we don't know what's going to become easiest. And there were moments in time in his journey where absolutely, verbal approximations and words were easier for him than AAC.

00:46:39 Amanda Murthy
Yeah, yeah, yeah, for sure.

00:46:41 Rachel Madel
And so it just becomes really tricky over time as we've kind of seen those peaks and valleys and changes in his abilities at any given time to verbalize and approximate and imitate. It gets to a point where I'm like, okay, we need to have something more consistent because it became so inconsistent. But it's never an easy conversation to have just because we hope that we're able to support verbal communication if children are able to do that. And, and the other thing is, it's like he could still, like, start verbalizing and approximating. It's just like he is. He's kind of all over the map, and we never really know with certainty what's going to happen. But I did have that honest conversation with you guys about, like, really putting our, a lot of emphasis and energy into AAC to build his language skills, just because that becomes so important that he's understanding what we're saying and then able to start communicating expressively with us. And I think when we did that, we did see a big improvement in his ability to use AAC because everyone was kind of supporting that modality with more intention and effort. So, yeah, I'm curious, Anand, what you think about kind of that conversation, what your experience has been?

00:48:00 Anand Murthy
No, I mean, obviously, I echo the same sentiment that Amanda said. Yeah, you want your kid to talk, but if he can't talk, you need to communicate differently. And I think the AAC device is tough for, at least for Maverick. I don't know how it is for other kids. Obviously, we've only dealt, it dealt with Maverick because it takes, like we've talked about, like, the motor planning, the attention span, the ability to sit, and actually, like, point to things. Those things aren't easy. And, you know, I see him getting frustrated because he just wants his, like, next thing, whether it's a snack, whether it's to go jump, whether it's do anything. And, I mean, I obviously see the importance of it, but it is challenging for kids.

00:48:53 Rachel Madel
Yeah, it's especially challenging, I think, because he has shown us that he really struggles with some of the motor planning aspects. Like, we see him, you know, going to a button and then it's like, not that one. And, like, looking and trying to kind of tell his body how to, you know, hit that icon and when he hits the wrong one, then, like, continuing to kind of hit other ones to get to the right place. And so I think that motor planning challenge is really, really big for him and for many students, but, you know, I think that that has been hard. And I also think that AAC is this, like, extra thing. It's like, well, we all have to have the AAC device. We have to be moderate modeling on AAC. It just becomes, you know, this extra thing that we have to kind of consider and some extra. It's extra work, too, right?

00:49:42 Amanda Murthy
It's extra work. Yeah, for sure.

00:49:45 Anand Murthy
For everyone.

00:49:45 Rachel Madel
Yeah, exactly. Exactly.

00:49:47 Amanda Murthy
Yeah, for sure. But necessary.

00:49:50 Rachel Madel
Yes, exactly. And meaningful. Once students start learning those motor plans and start making progress, and we can start, you know, hearing their, their voice more consistently, it's like, okay, all this effort and energy is worth it.

00:50:04 Amanda Murthy
Yeah, for sure.

00:50:05 Rachel Madel
Is there anything else that we haven't kind of covered? Any other anecdotes you want to share or kind of like, final thoughts?

00:50:17 Amanda Murthy
Trying to think? What do you think on it?

00:50:21 Anand Murthy
Yeah, we could wrap up on this. I know you have a lot of clinicians and people in the. The space where kids need help. Here's my one thing. I want to communicate, because we're dealing with this. Currently, no private school in Los Angeles will allow a shadow, and it doesn't matter. It's our burden, it's our financial burden to bring a shadow. And all these schools in La pretend to be progressive and inclusive, but, hey, there's a kid with needs. They don't give a. They don't care. They don't want to help kids. It's like, oh, no, you do it over there. And they pretend to be all inclusive and, oh, we're trying to be diverse and this and that. And it was very eye opening in the last year because we've kind of gone through this journey, and it's just disappointing because of the way they present themselves. If you want to present yourself as this exclusive, we only want the best kids. Whatever, fine. But you don't do that. You pretend that you want to have this, like, all inclusive group, and it's very frustrating.

00:51:38 Amanda Murthy
I just want to be honest about this.

00:51:40 Anand Murthy
I just want people to be honest. No, just be honest. Like, hey, we don't want anyone that has needs.

00:51:46 Rachel Madel
Yeah, it's.

00:51:47 Amanda Murthy
It's been very disappointing for 100% because we. Because we had the very different. Just to make it very clear for in terms as preschools, we go to an amazing preschool who opened us, opened up with open arms. Any therapist could come anytime. They're incredible. But also, not only them, we've actually had. I think we had, like, five other preschools, six other preschools that were, like, willing to take us within a month of applying, that we're totally into it. So preschool, I think, across the board, is a very different situation than once in kindergarten.

00:52:19 Anand Murthy
He's got to disappear.

00:52:21 Amanda Murthy
Yeah. He's gotta take a step back.

00:52:23 Anand Murthy
Yeah, I know. And that's frustrating. Guess what? You have a shadow. So he's not disrupting class. If he's having issues, the shadow will take him out.

00:52:34 Rachel Madel
Mm hmm. Mm hmm. I mean, I think it speaks to, like, a larger issue of just inclusion and how hard it is for kids with disabilities to be included in schools, in classrooms, you know, even with schools that, you know, are geared towards inclusion and have opportunities, you know, it's like our kid with, you know, a disability is at the back of the class. So, like, even if you are included, do you feel like you belong?

00:53:02 Rachel Madel
Right.

00:53:03 Rachel Madel
Like, there's.

00:53:03 Lance McLemore
I mean, yeah.

00:53:04 Amanda Murthy
Even. Even the public school like that, obviously, you know, they have to take him 100%, and they've actually been great. But it's also, you know, it's a bummer that it's like, he's not going to be in a general ed class for a majority of the day. Like, you know, he can do recess. He can do art, maybe.

00:53:22 Anand Murthy
And if you just think about it kind of macro, you're compounding kids not getting better by not including them.

00:53:30 Amanda Murthy
Well, I think also, like, our son, especially, which frustrates us, does really well with neurotypical kids. He really, like, feeds off of them. The kids at his school are so adorable and, like, in his face and trying to include him. And I think they've also learned a lot. A lot of his parents, a lot of their parents have said in terms of that, and I just feel like everyone's the better for it, but, you know, it's difficult to have to, like, you know, be like, oh, preschool was preschool. Now we have to kind of enter the real world. Sucks.

00:54:05 Anand Murthy
That's my TED talk, and we can wrap up.

00:54:10 Rachel Madel
Oh, I know. I mean, that's going to really speak to a lot of our audience. Cause they're like, yes. Like, why are we not including kids more? It's, like, one of our biggest challenges in the work that we do. It's sad.

00:54:21 Amanda Murthy
It's so stupid.

00:54:22 Chris Bugaj
Yeah.

00:54:24 Rachel Madel
Thank you guys so much for being here. I really appreciate you guys taking the time, sharing your experience. If people want to contact you, how do they go about finding you.

00:54:34 Amanda Murthy
Oh, Instagram is probably the easiest, right? Or, I mean, obviously, if anyone wants to contact us through you, please give them our email. And then if not, Instagram probably is easy. Anand, what do you think?

00:54:46 Anand Murthy
Yeah. So, yeah, you could dm us on Instagram. I'm anand Murthy. Anandmurthymh, and Amanda.

00:54:55 Amanda Murthy
Amanda Jane. Amanda Jane. J a n e. Murthy. M u r t h y.

00:55:03 Anand Murthy
Happy to connect anyone on email or whatever.

00:55:07 Amanda Murthy
Yeah, email, easiest probably is. Yeah, through email. So we actually, like, see it because it'll come from you.

00:55:12 Rachel Madel
Yeah, yeah, of course.

00:55:13 Amanda Murthy
Yeah.

00:55:14 Rachel Madel
We'll share those in the show notes. And I also know that you guys have a GoFundme that you linked in the show notes, so can you talk.

00:55:23 Amanda Murthy
A little bit about that? Yeah.

00:55:26 Anand Murthy
Yeah. So we have a basically to support infantile spasms. Research that doctor Hussein, who's the leading person in the world on this specific.

00:55:39 Amanda Murthy
Epilepsy, he's out of UCLA.

00:55:42 Anand Murthy
Out of UCLA. And we've been raising money for the last four years. I'm actually on the board of the UCLA children's hospital mattel, and been very involved in trying to basically bring infantile spasms to the forefront of what people care about. Because it matters definitely for awareness, but, yeah, 100%. Who gets beds? Who gets, like, all the different departments in a children's hospital compete for who gets first bed. So, for example, when we first got diagnosed, it took us 48 hours to even get a bed, which is ridiculous. And now we're obviously involved in the hospital, so it doesn't take that time, but all these things matter. And we're just trying to promote epilepsy awareness, specifically infantile spasms.

00:56:35 Amanda Murthy
And also a lot of drug trials just quickly mentioned, because any sort of new medicine in the field is very, very, very difficult to get any sort of testing. So all these drugs like mabs, I don't know, what do you think he's on? Like, he's failed probably 15 at this point. All these new ones need to kind of just get out there and get tested. And the one that actually has worked for eight months and ten months on him was technically an adult medicine, which they need a lot more research on as well. So just research, research, research for his condition specifically, but also just epilepsy in general, 100%. Like, if you want to donate to those, ours is very specific to infantile spasms, just because. And last thing just to mention, we've gone through a lot of fundraising for this and spoke to a lot of people, our doctor and stuff, and the reason why a lot of kids conditions don't get funded is because a lot of people who have money are a lot older, and so they become 60. Their grandparents or their parents, rather, died from Alzheimer's or they died from another brain disease. And so the focus and their money go towards a lot of elder diseases or a general disease, too, that can affect everyone, like cancer.

00:57:56 Anand Murthy
There's a massive age bias in terms of how philanthropy and pediatrics is massively underfunded it under all causes.

00:58:06 Rachel Madel
We're definitely going to link to that. So I definitely encourage our listeners to check it out and to donate if they can. Thank you guys so much for taking the time. It's been a pleasure, as always. I love being a part of your team, and I love that you guys are so open and willing to share. I think that really helps other families in similar situations, and it's always great to get a parent perspective on the whole process and their journey with AAC. So thank you guys so much for being here.

00:58:32 Amanda Murthy
Thanks for having us. Rachel, we love you. We love you so much. We love Alyssa and everyone on your team, and thank you for everything.

00:58:39 Anand Murthy
Thank you.

00:58:39 Rachel Madel
Of course. So for talking with tech, I'm Rachel Madel, joined by Anand and Amanda Murthy. Thank you guys so much for listening, and we'll talk to you next week.


 

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