Episode 5: Ethan Wall's Story

Interview with Sadie Zawisza about Ethan Wall who passed at Age 6 due to complications from Phelan-McDermid Syndrome.

FROM SADIE: This episode shares the story of Ethan, an incredible little boy whose life was cut short but who left a lasting impact on everyone around him. 

Diagnosed with Phelan-McDermid syndrome and autism, Ethan faced complex medical and developmental challenges, yet he was gentle, observant, quietly funny, and deeply connected to the people who loved him. Music was his language. Sensory play brought him joy. His soft laugh filled every room.

The conversation reflects on how working with Ethan reshaped what progress truly means, shifting from compliance and structured programs toward connection, comfort, and honoring autonomy. It highlights how meaningful moments don’t always look like skill acquisition. Sometimes they look like sitting beside a child, following their lead, and prioritizing quality of life.

It also explores the evolution of ABA, moving toward assent, dignity, flexibility, and relationship-centered care, and how children like Ethan continue to shape the heart of the field.
Ethan’s impact lives on in every pause, every choice offered, and every moment of respect.

A beautiful reminder that the smallest voices can create the biggest change.

Transcript

SPEAKER_01 0:35

Well, where do we start here? Um, this is my very first time actually interviewing someone for this podcast, and uh, I just want to start a quick disclaimer before we start is that um this is exactly why we did this podcast was not to tell our story but other people's as well. So uh we brought someone on tonight who's gonna tell a pretty heavy story. Um a great story. I've got a great young kid named Ethan, um, who there's a book about that she wrote uh front to back about being uh his BCBA and going through his life with him uh until the end. So I'm gonna do my best to shut up, to listen, to not talk so fast, uh, because I want her to tell the story to the best of her ability. Um it's gonna be a little different than I'm used to because obviously I try and make things lighthearted, which it's always fun sometimes to do, but I don't think this is the appropriate moment to do it so much. So uh with that being said, uh I want to introduce Sadie. Uh Sadie, it's nice to meet you. Thank you so much for coming on.

SPEAKER_00 1:37

Thank you so much for having me. I'm very excited to be here. And small correction, um, I am now a VCBA, but I was Ethan's RBT. Okay. From the lovely Julie Tomer, who was Ethan's VCBA. Shout out to her. She really did. She is the reason, as well as him, that I am where I am. Um, she was a big push in that for sure.

SPEAKER_01 1:59

Awesome. Well, yeah, sorry about that. But yeah, RBT is just is is it's a great, it's a great position, especially when when when learning and and going through with this thing. And so uh with that being said, uh, I would love to hear the story of Ethan, Ethan Wall, uh, who um let's just start it off. Where did you start? Where did you start? How did you start? Where did you start? Did you go to college? How did you become an RBT? Let's start there.

SPEAKER_00 2:23

So I originally started at Curry College, which is in Milton, Massachusetts. So I'm located in Mass and I have been in Massachusetts my whole life. Um I went to Curry with the thought that I wanted to be a special education teacher. Um, I learned very quickly that I did not want to be in a classroom. Um, it was not what I felt like I was meant to do. Um, so I went to a career fair because I was a little confused and I just knew I wanted to help people. Um I had a lot of experience with people with autism. Um, one of my mom's best friends, I grew up with him. He's a couple years younger than me, and like one of his only words to this day is Sadie. So this is one of those relationships that, you know, taught me that I wanted to do this. So I went to a career fair and I found this cool table about ABA and I had never heard of it. Um and they're like, hey, you can go into people's houses and you can play with their kid and like teach them things one-on-one, and that's your job. And I was like, wow, that sounds really cool. So um I started with this boy, and you know, it was great. And he was definitely a lower support kid where, like, you know, he didn't need much support, but he needed help on those social skills, and we thrived together. We made it really far, and it was great. So that was my first like month. And then the BCBA that I was working with was Julie, and she goes, Hey, I'm starting with this kid, and I think you'd be a really good fit. And I was 19. I thought I wanted one client after classes, that five to seven block, 10 minutes away from college, and I go home. It wasn't, I was not trying to have a full-time job. Um, but she's like, No, like come meet him. And I was like, Okay, so I went to meet him and I walked in and there was Ethan, and he was three years old, this little blonde boy in a diaper, staring at the wall, sitting in the corner, staring at the wall, rocking. Um, and I was like, Okay, hi, Ethan. And I walked in and he yelled. He yelled he did not want me there. Um, so we tried, we sat in the doorway, and then a couple days went by, that same idea. He, you know, was still not wanting us near him. And I'm like looking at Julie, like, what do we do here? And he she goes, let's give it a little time. Keep coming, keep trying, trust, trust what we're doing. And I said, Okay. So I came every day, and it was it was a couple months of not progress. We weren't really even, he wasn't letting me do much until one day he just came and sat on my lap. And I was like, Okay, I think we're getting somewhere. So that was kind of how my relationship started with Ethan. It was a little bumpy in the beginning because I was also so new to the field. This was a very different client than I had really ever worked with. Um, but before we get into Ethan, let me tell you a little bit about him. Because this guy, he's the coolest kid. Um, but so he was diagnosed with Phelan McDermott syndrome. Um, it is a very rare regressive genetic condition. Um, with that, he had low muscle tone, developmental delays, GI issues, uh seizures. We also did not have any spoken language, and we never did. Um, he had lots of hollering and vocal stims that he would do, but there was never words. Um, but when I think about Ethan now, I, as much as his diagnosis is a big part of his story, it was not all of him. Um, his personality was huge. He was very gentle, but observant and very quietly funny in his own way. He had this huge sense of humor. Um, and I just feel like music was another big thing for him. Where music, you turn it on, it doesn't matter what time of day, what we're going through, it was like a light came back. Um, music really did just it was his language. Um, he loved sensory play. He loved whipped cream. I would spray that whipped cream all over the table and let him go ham. Um, it was one of our favorite things to do. Finger paint. Um, a mess was just fun. Those messy moments were like so beyond meaningful that I just we didn't care about a mess. Um, the finger paint, his mom is a beautiful artist. And her house, she poured so much love and creativity into that home every single day. And like we really tried to do that with him. Um, I'm holding up my coffee cup right now. This is his finger paint. This is his rainbow. It's all over t-shirts that we have. Um but that's it. We our go-to was always the rainbow. He loved doing the shapes. Um, but tragically, Ethan passed away three years after we've been working together. He was six years old. He had complications from Phelan McDermott syndrome. Um, seizures are what took him due to complications from his epilepsy. Um, and it was so tragic. And I think one of the hardest parts about it is that during the time when he passed, he was actually doing okay. There was a time where he wasn't, and I would say that was, you know, fall 2021 to you know, about probably December 2021. But then that December mark to March when he passed in 2022 was seizure-free. We we were okay, we we were doing good, and then um, yeah, he you just didn't wake up one morning.

SPEAKER_01 7:41

It's amazing. Um, and just in your story, but like it it I I liked, you know, your book, your book's called E-Man. Um, it's uh Remembering Ethan Wall. Uh me and me and Shannon both read it uh front to back. Uh it read it really easily, and then the pictures were amazing to what look at too as well. That like helped to give kind of the story too of that brief time. But so he was your very first client that you've ever had, basically. Your first one, RBT, first, first. What made you choose him out of all the people? Was it just the connection that you that you felt when you met him?

SPEAKER_00 8:13

It wasn't really like a choice per se. It was more that like I could either take it or not take it. And it was like I was, you know, provided that. But as soon as I knew that like he's looking at the wall, he doesn't want to see me. I'm like, well, I gotta break this wall down now. Like I'm here and like I gotta get through to you. Um, and then when I started, you know, memorizing these, he used to listen to hoopla kids. I don't know if you know who hoopla kids are. Yeah, I didn't know hoopla kids before Ethan. Whoa. My my Spotify rapped every year, still hoopla kids.

SPEAKER_01 8:42

Crazy. That many times, yeah.

SPEAKER_00 8:45

Oh my goodness. But like when I started learning, like, oh, we're going to the zoo, that song, and I start singing along with him, he kind of looked at me and be like, Who's this crazy lady in the corner? But like, also I'm vibing a little bit. Um, so we definitely built that relationship with that music. Um, but I do think that it was just like it it was a it was a light moment for me of like, I want to, I want to see this through. We need we need to work together. Um and when I met Ethan, he was not having seizures. So the seizures did not start until probably a year after we started working together, or not like nine months to a year. Um, the first couple were we weren't sure what they were. They were they were grandmas, but we weren't sure what they were at that time. Um, he also did have absent seizures where he did just kind of zone out and we weren't sure what those looked like. So it was a lot of unsureness, uneasiness at all times.

SPEAKER_01 9:40

I can imagine of just yeah, just uh the the the seizures and the the the uh Phil Phyllon is it f Phil McDermott? Phyllon McDermott, how do I pronounce it right? Feeling McDermott, excuse me. See, this is my ignorance talking, and I apologize. Um but you know it um that whole element to it was was a part of it. Like I wrote down especially in the story, because you were describing learning the peck system with them and going through that with them. And then the one thing I wrote was just like the the first thing that was really bad was him having no strength to even like pull the peck card up, and you had to put those those towel strips on there and then make it like and grab and pick it up. And I I mean I was listening when I when I read that, I was just like, gosh, like I mean, you know, and just in my my circumstance of it with Carson, I mean, just him picking it up altogether was just because of interest, but it's like a double task of having to deal with the the the muscle muscle issue plus the fact that he, you know, you have to get his attention to do it, and then let alone teach him that it's communication. I mean, it's gotta be impossible, especially in your first job doing it. Like, did you ever were you ever scared of like this was too much or this was just something you couldn't handle, or what what was your thoughts to that?

SPEAKER_00 10:46

I had never heard of PEX at this point. Like, this was very new to me. Um, and PEX was not the first system we tried. I mean, when I first met Ethan, he had an AAC device. I don't remember what program it was, but it was something where it was um, it only showed two icons on the screen. Um, and when you clicked one, it would open up another two, and it was kind of like a choice making system. I I'd never seen it before. But Ethan had a hand-to-mouth behavior um constantly. His hands were always wet, always. So we couldn't like touch the when we would try to talk in the iPad, it wouldn't work because our fingers were wet and it wouldn't. So it was just constantly frustrating for him. Um, he had this behavior for a while when he would bite right here, and that was right when I met him. So he had these gloves that he would have to wear that they were putting on so he wouldn't like he was getting infections. Um, so with that, he also couldn't touch the iPad, like it wasn't working. So we very quickly realized this isn't gonna work. And also for him, his generalization was always overgeneralized, um, to the point where iPad meant TV. iPads his shows. That's all that that is. We tried different color cases. We tried to, you know, have only, you know, we didn't allow him to watch YouTube on that other one, but he still made that connection, iPads for to watch TV. Um, so we moved on from that. We then tried before we did PEX, I guess this is still PEX, but we stuck icons all over his house. So we had pictures like in the doorway of his bedroom, we'd work with the door kind of shut. Um, and I'd kind of sit like near the doorway to have control. And um, he would basically just like grab the go and like hand it to me, and then we'd leave the room. Um, he we'd have music icon next to his speaker so he could go over to that where he'd kind of stand there and do that. So we noticed that pictures were helping. So that's when Julie was like, well, let's try Pex. She made the book and she made so many icons, that girl. And I give her all the creds as a BCBA now because there's no time to make visuals. This is so hard. There is no time, but you still have to do it. I find myself in 2026 making visuals on the couch, watching TV on a Saturday, trying to just get it done for the next week.

SPEAKER_01 12:57

And you're always probably thinking of like different, like different icons to make or like what's important to them, and like you're trying to make those ones first, and then guessing, like, where would I go now? And what would what would be interesting? And I gotta imagine that's tough.

SPEAKER_00 13:08

The text I would get from Julie being like, Hey, so which container of tuna looks more like the one he eats? And she would send me pictures, and I'm like, girl, I don't know. And it was just like a constant, like, let's try to make this as good as we can for him. But like it was a lot, and then we lose an icon. Hey, Sadie, can you print another? And it was PEC PEX is hard, and PEX is hard to do thoroughly and correctly, I have to say, it is hard. Um, the ABA has also shifted in that PEX is not being used as much. However, I look at Ethan and I say, like, that gave him language, and I would not change anything. Um, and I think for some kiddos, when there's so much complexity in your abilities, you do what you can to tell us. That total communication approach. If it's not by the books, it's not by the books. You're telling me something. And that's mic drop. You know what I mean? I just feel like there's so many rules, like, oh, you're not supposed to do that, you're not supposed to do that. He just told me something. He's never told us anything before. Like that was so big.

SPEAKER_01 14:06

Big step.

SPEAKER_00 14:06

He he was at the point where he would literally grab an icon off of his PEX binder, carry it two rooms away, and give it to his mom. Like he got so far in PEX where he was he knew that these words meant something. Um, but then the seizure started, and that where we had a big regression there.

SPEAKER_01 14:27

So there was also a part in the book that I wrote down too that um Yeah, when you when you saw basically he was going well in in 2020, and then you had to add leg braces to the whole thing, and then learning how to re-walk again. Um, I mean, how were so his parents with the Ethan was the oldest, right? He was the first the first child.

SPEAKER_00 14:46

Yeah.

SPEAKER_01 14:47

And so when when this happened, I mean, how were that you say like all the in the whole book about their parent strength? I mean, how was it dated? You saw them what, Monday through Saturday, right? You had like that the six days a week basically, and then and then you'd leave for like you'd only work eight hours. Was it eight hours you were there, or is it sometimes longer?

SPEAKER_00 15:04

It it was a lot. So uh another big part of the story, I think, would be that it was during COVID. So 2020, think about that. So 2019 is when I started in November. Um, I was living at Curry College, so that's in Milton, Massachusetts, which is kind of outside the city of Boston. Um, I grew up in Dracet, Massachusetts, which is kind of northern Mass, which is on the border of New Hampshire. So Curry in my childhood home, where at that point that's my house, um, uh it was about an hour and a half away. So uh when we had we got kicked out of the dorm rooms, I had to move back home. So I was commuting an hour and a half every day to get to Ethan's house and play with him, compared to my five-minute drive that I had living at Curry. Um, so when COVID hit, um a month of living at home during the shutdown, um, he was pulled us out of school completely. Um telehealth was not gonna work for him. Um so I talked to my dad, 19-year-old, me was like, I need an apartment. I I can't go I we don't know where this is going. I I can't do this. I'm exhausted, but I need to be there for him. Um, because he's also not going to school now. So my dad, bless the soul of my God, he literally paid so much money for me to get that apartment because I didn't have enough money at that point. Um, he paid for that first year fully. Um, he helped me for a little bit of that second year. Um, but then I was on my own. But Ethan was the big reason that I moved to my own in the first place. Um, been on my own ever since. Uh, and it was a very good part of my development and story and all that. But it was also heavy, you know, going from living in a dorm room and going to the, you know, common area to eat your dinner with your friends compared to, you know, coming home to a one bedroom alone, um, making a bagel for dinner, you know, it's different. So, with that side of it as well, I I was only working with Ethan. So during that COVID time, like I was doing telehealth with that other kid because he could access telehealth. So I would work with Ethan all day. I'd go home, probably take a shower, and then hop on my telehealth call with this other kid. But Ethan was my full-time job. Um, and with that, I think during COVID and being with them so much, um there were a lot of boundaries that I think that were quickly dropped with his parents and a sense of like, how do you not? Like we're seeing some awful things in this, you know, uh, with this your child, and we all love him so much, and we're just we have to be there. You know, we just the we had to. So there was a point when the seizure started that um, you know, you might wonder, how did she have so many pictures with this kid? You know, she was an RBT, she's not supposed to do that. Well, we got consent signed really quickly because we wanted to record everything. We were trying to catch these seizures. So a lot of these videos and pictures that I have, uh the whole reason was that we were trying to catch something, but some of these moments that I captured, uh I can't imagine not having them. Like it is one of the it's just I did, I I they will tell me to this day, like I got some of those best giggles out of him. My gosh. Um, and you can tell in those pictures, but yeah, it was it's a point of like you're their RBT, you're there, you're working with them teaching skills. But the second that medical complexity comes up, and like, you know, you gotta put it all aside, you gotta focus. Our data went from how many times can he clap his hands today to how many eye rolls did he have? Are we increasing? Do we have to give this data to the doctor? Like it went from very different program style and session structure and what we were doing there.

SPEAKER_01 18:40

Yeah. And um and before the seizure started, was he like, was there a lot of symptoms besides the muscle stuff? Like, was he doing like a lot of medication and stuff like that before it started? Or like did it did medication increase after the fact? I know you brought that up in the book as medication.

SPEAKER_00 18:53

He was on sleeping meds when I had met him, or he was trialing a couple because his sleep was always a big struggle for him. Um, I know his mama would go on drives in the middle of the night, loops and loops, just trying to get him to regulate. Um, but I do know that that he got on the sleeping meds. Um, he did right when COVID hit, so it was March 2020, he had to get a G tube because he started having GI issues. And it wasn't for eating for him, it was for he was aspirating liquids. So all of his liquids had to go through the tube. So like he couldn't drink water ever since 2020. Um, we tried like those thicket packets where we put water and we make basically like thick water. Mom and I tried it and we both looked at each other. We're like, I think he'd prefer applesauce because I don't like this. Like, I let's just give him like what he can have ice cream applesauce, like thick water. We is immediately no. Um, so that was really hard. He also really loved like crackers and checks. And so picture that, but like you can't have a sip of water. Like it was just so dry. So there was just a lot of things that you looked at him and you're like, dang, like, I just want to just want to make you feel but I want to make you feel good. I want to make it a little bit more.

SPEAKER_01 20:06

Yeah, just just just be happy for a day and enjoy your day. And it's like everything, even little things like that, it's a struggle. That's um, yeah. How so and when you were gone those times, like how were so his parents that you said her his mom was an artist, was his dad out of the house working 40 hours a week basically, and coming home and then having to basically work another primary job and having to do the best as he can and raise kids.

SPEAKER_00 20:29

And I can't imagine what was what was his life like when after that was over they really are just like the realest people, and I think that is something that made this relationship so awesome because we talk about it now to this day, like we are very close, and they'll be like, I mean, not gonna lie, Sadie, you walked in and you looked like a teeny bopper, and I'm like, who is this girl coming in to sit with my kid? Like, who is this girl? Um, you know, it's probably 90 pounds soaking wet, like tiny teenager. Um, you know, and they are like, but then, you know, then then you talked, and then we're like, oh, we like her. Um, and I thought that was just really cool that they could kind of look past that. But so dad, he works in construction. Um, so he would work, you know, really long hours. Um, but then there were some seasons where he had off time. So I did get to bond with both parents very well. Um, in the beginning, it was Sarah and I. That was Mama. She um it was her and I. When I started with Ethan, his little sister was just born, literally two weeks before. So I have been very lucky to see little Miss Ruby grow up um and you know, be a big part of her life as well. Um, but with that, Sarah was juggling, you know, she's raised a baby. Ethan's in the other room doing therapy, trying to figure this out. I mean, they're they're young parents. Um I would say that dad and Ethan's relationship was so special. Sure. Very, very the bond they had just it was so special. There were some days. Where Dan would get home, and I could tell he was just he was he was pooped, he was done, and he he could just go lay in bed, and instead he's like he would pop in the room, just sit in the floor with us, and sometimes not say anything. We're just vibing, and he just wanted to be there. Um, so he he would just be there, and it was awesome. Um, Sarah and I, we had our moments of bonding in the sense where there's this video, and we were on a walk around the neighborhood working on holding hands because Ethan did not like to hold hands because he always had the cuts. So we tried to just hold, like, oh, I can hold your wrist and we can still be safe. Um, but we'd be on a walk and Ethan was this tiny little, tiny little boy, um, super skinny, and he it was hard to find pants that fit him. We'd be on a walk and there's this video, and his pants just keep falling down. And Sarah and I, I think we just needed that laugh so bad that day because you can hear in that video, we were laughing so hard. And like, yes, it was funny, but like we needed that laugh so bad. Um, and you can hear that in that video, and it's one of my favorites for sure, because we just it was a moment, and he's even like, what guys? Like, it was just so silly. Um, but I think they all they they put on this really strong front, they put on this brave face, um, and they were just very motivated and would do anything for him.

SPEAKER_01 23:17

It's amazing.

SPEAKER_00 23:18

Same with their daughter, and they did just have another baby.

SPEAKER_01 23:22

That's amazing. Great news.

SPEAKER_00 23:23

Yes. So for their lovely parents and they would do anything. And I think you know, this loss was tragic. And something that you know was also interesting. So, like when he passed away, um, it was March 2022. And I had actually just moved to a new apartment five minutes away from Ethan's house um in February. So I'd moved in, I was all ready. Um, I've had a couple sessions with him, and it was like, oh, this commute, I could get used to this, this is great. Um I got so March 20th, or nope, I'm sorry, March 21st was the St. Patrick's Day Parade in Boston. And we had chatted, being like, hey, like I'm gonna be there, you know, if you're there, like if you see me, say hi, you know, just because I know they were gonna go there. And it was a day of, you know, we're drinking in Boston, we're having fun. And they didn't show up and I I didn't really think anything of it. Um and the next morning I got a call. Um, and they were I kind of thought they were just canceling session. Um, thought something might have happened, thought maybe he could have had a seizure. Like it just was so normal to think that and it was okay. Um, and I was just like, hey, good morning. And it was probably like 6 30 in the morning. And they're like, hey, like you at work yet? I was like, no, what's up? I'm about to leave. And um it was just silent. And Dan said, We lost him. Can you come over? And I was like, What? Um and I like just wasn't processing it. Um, so then there was a silence more, and I was like, Okay, okay, I'm on my way. And I just like hung up and I remember just staring, had to stare off with my dog, just like I don't even know, I can't move. Um so I got in my car and I drove, and then I soon started losing it. So I like had to stop driving because it was not safe. Um, pulled over and I just was trying to process everything and I was like, wait, I have to call out of work. I'm going to my other job. Like at this point, I was working somewhere else as well. And there was just so it was such a heavy day. Um and walking into that house and him not being there was um heavy. It was a whole different kind of um loss. I I feel as though I am lucky in the sense that, you know, I have my grandparents still, I have a lot of my family members. This was a big loss for me. I have my childhood dog still. Like I am very blessed. Um, this was I I did not know what to do with this grief. This was a very just that that was my everyday, you know. I don't have kids, but that was a boy that I spent a lot of time with for three years.

SPEAKER_01 26:00

Um and I'm sure walking into the room for the first time, and it's like an empty feeling of like uh it's like a it it it really is. It's like I think that's the hardest part where you you're with him all that time and then you walk in that room and then or walk in the house, and it's just like a it just a whole like it's like a weight on your chest all of a sudden, I'm sure.

SPEAKER_00 26:17

Um and that weight didn't go away, you know, that weight stayed the more like I I went over there multiple times, even a year later, that year anniversary, that two years, you know, it doesn't go away, but I did feel this year talking about him, there was more joy this year. There was more memories being spoken about, and I think that that it does come with time. The pain doesn't go away. Um, but the memories, the more they're talked about, the stronger those like feelings can get that you felt during those memories. Um so there was a lot more pride that came this year and a sense of like happiness sharing his stories.

SPEAKER_01 26:57

I just yeah. Um just it's a lot, it's a lot to process of having to do that, and especially like just the fight of it. Like, did you guys did you guys see the writing on the wall for that? I mean, I know like in the book it like kind of ramps up the seizures and then it you read it. I think at one point you said it kind of stopped or it slowed down, and then it just kind of came out of the blue. Did you guys did was that was that kind of like the like there was no chance he was getting to a certain age? Like, was there that was that kind of ever told by the doctors?

SPEAKER_00 27:23

You know, Phil and McDermott syndrome, there's there's not a lot of research. I think they're they're doing more now and it's great. However, there's not really like a life expectancy. There are things that can happen that can decrease your life expectancy, um, seizures being one of them. However, there's not a magic number, you know, there's also not um like there's a therapeutic level of seizure medication until there's not. Like your body changes in one way, whether it's a little puberty hit or whether it's, you know, just anything in your body that can shift, like it can really affect the seizure meds. Um, so I think to answer your question, there there was a point where I remember Ethan had a lot of seizures that day. I was that fall or summer 2021. Um, and I remember getting home and my BCVA didn't come to that session. And I I called her in my kitchen and I'm just like, I have to ask you something. And I'm like, is this like like what's gonna happen? Like I actually like just didn't, I was like, what do I need to like? Is this bad? And she goes, Sadie, I don't know. And she's like, I I don't know. And something a little background about Julie, literally superwoman. She, while working as Ethan's BCBA, went to nursing school. Um, she's a nurse now, she does not practice as a BCBA anymore. Um, she found, you know, that nursing was more of her what filled her cup. But with that, hearing those words from someone who's a nurse, you know what I mean? Hearing those words of like, I don't know, like this is something's wrong. And, you know, we're trying, they're doing all the right steps, but like there's not a magic fix for these seizures that he's having. Um another thing with Phelan McDermott syndrome is their pain tolerance is heightened. Um, so heightened to the point where, you know, Ethan, he once cracked his head open and he didn't, you know, there was there was no ouch eat that didn't hurt, you know. Um, my Miles I work with, you know, who has PMS as well, he has no pain tolerance. You know, we'll see like a bruise pop up. We're like, oh my gosh, what happened, buddy? You ran into the wall and I don't even know what that happened. Um, so with that, that was always concerning as well, because we never knew how he was feeling. Um, so that was really hard to pinpoint. There were a lot of times where you could tell some precursors he'd do. Um, also his body temperature, he would overheat really easily, which those would trigger seizures. Um, when he got his seizure helmet, that made his head hot. So then that would trigger seizures. Like there was just so many things that like I felt like every time we took a step forward, we took four back. Um but there was a point, like I explained, where it did settle. And I felt like a lot of our anxieties, like maybe our wall came down a little bit. Um, not that you're ever preparing, but I think there was a sense of something's wrong. I don't know what's happening. I don't want to think that, but there was a sense of like I did cry that fall 2021, summer 2021 a lot. There was a lot of nights of like I'm scared for Ethan. Um, but that did go away that beginning of 2022, which is why I think it was just like, what?

SPEAKER_01 30:29

Yeah, like just how did this, how did this happen? Yeah.

SPEAKER_00 30:32

Like how? I was just with him two days ago. What? Like, I just couldn't process that.

SPEAKER_01 30:38

Yeah, that story about him being on the bus to school, and then he came home and he was overheated, and then his mom had to put him in the bathtub um to cool him off, and then he had seizures. It was uh that was a hard read. Uh, it was just thinking of I mean, his mom probably has never done that before, and how do you deal with a seizure?

SPEAKER_00 30:54

And you have to get that nose spray and and on the side, and I I just I you know, as the RBT in the house, are we supposed to take care of our clients' siblings? No, but who's gonna watch the baby while she's trying to like cool her son down from seizing? Like, so that's that boundary that you know, as much as you want to be like, oh, follow your ethics, like I hear you. However, that doesn't exist when it's life or death. It doesn't and I think that that wall it had to come down. And I think about that in all the cases I'm in now. I think there's such a line of you know, following your ethics, following all you do, but like these are lives. This these are human lives. It's not numbers, it's never numbers.

SPEAKER_01 31:39

Never. And then yeah, it just um it's it's one thing again, like I said, I think I said already, but one thing to go through being non-verbal autistic on one thing of it, and then a whole different, you know, muscle crashing system that you know have to deal with a million different things on top of that. I it's it's gotta be amazing and and and and just just a miracle to have parents that that he had, uh, and having you and having having Julie and having all the people in his corner to kind of you know um just comfort him as much as possible. Um, you know, you said you like music. Like what kind of music was he into? Was he did you guys just like hit shuffle on the iPod or what what was he doing? I know that you said and you'd come home, you'd come over there sometime in the music was blasting with music or something in the background.

SPEAKER_00 32:26

Oh my goodness, I was overstimulated all the time. All the time, but it was okay for that boy, my goodness. Um, he loved skin emarink, that was one of our jams. Um and Yankee Doodle. I actually didn't know the second verse of Yankee Doodle, and when when Sarah started singing it one day, I was like, I didn't know there were two verses of the song. Yeah. And that was another big bonding moment for us where we just had to find the giggles where we could find them. Absolutely. Um, oh, and we did, and we did. So I think those were the music he liked. He loved um jammers. Okay, have you ever heard of jammers?

SPEAKER_01 33:02

No, uh-uh.

SPEAKER_00 33:03

Okay, so it's this like cartoon, and they're instruments with eyes and mouths, but he didn't like it in English. He had to watch it in French. If you put the English on, like we'd be hollering, yeah, smacking the iPad on the floor, like, no, like put the French one on. Um, on his anniversary, I was telling my fiance this story actually, because it was one that I don't think I had told him. And he was like, You have to find this video. So I texted dad, and I'm like, what was the French instrument? She goes, Jammer, Sadie, come on. I was like, oh my gosh. Um, because it was one of those that we would put on, and it's like, Are you kidding me? Yeah. Um, and it was also one of those videos where like someone was had their phone recording like a TV. So it wasn't even like a like a good quality video. It was like like awful, but he loved it, and it was that one version.

SPEAKER_01 33:52

Yep.

SPEAKER_00 33:53

Um, and then there was this one other video where there were these circles, and it was literally said red, orange, and it went through all the colors, and he would be crying laughing at that video. I don't know.

SPEAKER_01 34:07

Carson watches a video like that. It's uh it's a thing like that with the with colors, and it says the orange and the the yeah, does the same thing. That's that's incredible.

SPEAKER_00 34:14

Oh my gosh, but like it's comical. Like you would think that we just told the funniest joke. Like, I want to know what those colors like what what's I want to know. I want to be in on it. Um, but it was just he his joy was so infectious. Oh my goodness. So infectious.

SPEAKER_01 34:29

He had a great smile at the pictures alone. You've you guys got some good ones of him smiling in the bit in the book, and uh that I I definitely had a like big smile on my face, and then reading the next chapter, and then it was like reading about something kind of dark, and I was like, oh, it's kind of hard to get the smile off your face, seeing his face, but then you're thinking, This poor boy just going through this every day. I mean, so was there anything like what what were some good things? Like, what do you like to do on the weekends? Like, do you guys did you like go places? Like, did you did his parents try to take him on the house all the time? Like, what was his weekends like?

SPEAKER_00 34:56

We did a couple, we did a lot of community outings. We we tried a lot of things. Um, they tried some family vacations to the beach a couple times and they did their best with it. Um, just picture though, a hand-to-mouth behavior, that wet sand in a like it's just it's a hard situation. Um, so they did their best. They kind of would make him like an area where the sand couldn't really touch him. Um, he'd go on the water. He loved baths. He could live in the bathtub if you let him. Um he also really liked looking at animals. So we went to the like this farm a couple times, and there were these giant pigs, and we did, we were just staring at them. We didn't want to leave the pigs. Um, he liked going on the car rides, but that did shift a little bit where we weren't really sure if we liked it anymore. Um, but we loved being outside, um, going on our walks. Um, but I think a lot of it they just tried to keep things moving. They were just trying to keep things as normal as they could, do everything that they could together. Um, whenever I could join them for an outing, I would. Um, but also family time. They had were they're very big family people. They have family all around them. So constantly, you know, going to different houses and seeing those families. Like I did. I was very lucky to be very close with his grandparents, even. Like they came to my engagement party. Like it was very um his his his grandmas, like it's just it's very special. Like they even saw that connection and it doesn't end.

SPEAKER_01 36:25

That's great. That's great. That's great that you did that, and especially going with family and stuff. And how was it with going to family's house? Were they pretty good about giving you guys space and like letting like whatever happened happened? Like, was it like was he too loud at places where like it was uncomfortable? Like, how did you feel with all that stuff?

SPEAKER_00 36:40

No, we I I feel like I just at that point in my career, I had never really seen anything like this. Um, so I was kind of just following how the parents responded and they were never embarrassed. So I never was, and I think like I carry that with me still. Um, because I have now worked with parents where, you know, there is that piece of embarrassment and you know it's it's real. Um, but they just didn't show that ever. And I I I carry that with me still because it was just so um, it's very natural for me now because I never really had to learn to be accepting of it because it was just it was just how it was. Just what it was. Um and also there were some days, not gonna lie to you, where that data sheet was under the bed because it got kicked there, you know. And there were days where like we're like, oops, sorry, Julie. Like I will do better tomorrow or we'll do our best because things happen, structure happens where it falls apart, family comes over, and we're actually just in a model language right now. We're gonna work on this social because that's what's important. That's just what we did.

SPEAKER_01 37:42

And I think a big part of that too is that's that's what kind of gets lost in the model sometimes because I I always say too, especially with with with um with ABA, uh, it seems like sometimes it is structure's key, of course, but it's sometimes it's too structured. Like when you're going like five minutes at a time, like uh if I did this to my nine-year-old, I've said this before, but if I've done this to my nine-year-old, I don't think he can handle going that fast sometimes. You get this for five minutes up, give it back to me. Okay, yeah, give it back to me. Like they're just learning how to be kids, and then they're learning, and then like they're learning just to be able to interact with people, and then we have to literally they have to then your parents learning of that of that. It's um it's a crazy structure sometimes, and I I give them so much credit of just yeah, just this is who my son is. I love I it doesn't matter what happens, uh, it doesn't matter what goes. We we go places understanding that this is what it is, and everyone accepts it. And that's that's the place that that we should all be. It's it doesn't happen a lot, but having family like that is incredible. So uh kudos to the whole family for doing that, especially making you and then uh you know, making you feel welcome and everything. It's it's a it's a blessing.

SPEAKER_00 38:46

I think something really beautiful that I, you know, I I carry with me because it was something so like they didn't have to do this. Um I was in the obituary. Um, they said, Thank you, Sadie, for showing us all Ethan could be. And that is something that I it sticks. Um it stuck. It was uh yeah, it was something where, you know, I spoke at his wake, I did all that. Um, and then that day we picture awake, picture, you know, its ending, and everyone just kind of started singing itzy bitsy spider. And it was the most heartbreaking but beautiful thing I've ever seen. Um, I've been a been a part of genuinely, um, because it was it was all of his people. All of his people were there. Um, I got to form relationships with his teachers in a sense where like an RBT wouldn't typically do that as a home-based staff, um, where I still chat with them. Um, it was just Ethan has built a lot of a lot of relationships. Um, one being my Miles, um, who, as my second job, I am a personal caregiver. Um, for a boy, he's 13 now. But I met Miles all because of Ethan. Um, when I published my book, his parents reach out to me and they said, I just heard the story. Um, we knew Ethan. I want you to come meet my son. And at first, I immediately was like, no, I I can't. Um, it was really soon after. Um, but then I thought about it and I searched on Facebook and let me see this kid. So I saw him and I was like, dang, okay, I'll come see you. Um, so I walked in and he's sitting in his little wheelchair with his foot up in his like leg, like he does. And I'm like, oh my gosh, that's how Ethan used to sit. And I'm just looking at him, I'm like, oh boy, Sadie. And he has got his fist in his mouth, and I'm like, oh boy. So I walk in and I'm looking at him, and we just start, and I, you know, he has his buzz light year and we're talking about it. I say and to infinity and beyond, and he just starts laughing. And I went, okay. So his mom and I chatted, and we were like, listen, um, do you want to go the ABA route or do you want to just be his friend? I was like, I want to be his friend. I think that ABA is a big part of everything I do. But after Ethan, in this syndrome, I I need his, I need to be his friend. Um, yeah. So that's what I am. Miles is my bestie. Um, and him and Ethan actually met each other before me, before I was ever in the picture. Um, it was 2019 Easter. So this was April of 2019. I met Ethan, November 2019. They had an Easter party for the Feeling McDermott syndrome community at Miles' house, and Ethan lived 20 minutes away. So they came and there's a picture of Ethan sitting where I sit every morning with Miles. Um, which I we I was given like a year after meeting Miles. Like it was something I had found out later in the game, but what a moment. And there is a video, I guess, that no one can find, but someone's gonna find it someday of the nanny cam that was up in Miles' room. Ethan and Miles were put up there to go play, and there's a video. And I we haven't seen it yet, it exists, but it's something that you know it's it's stuck in time somewhere. Incredible, and that and those are my boys, you know?

SPEAKER_01 42:05

Small world. Uh it's yeah, it's incredible. Yeah, I'm that I'm I'm glad you did that. And that's a good choice, obviously, of being the friend. And it's I mean, again, that's it's life-altering what you went through. Um, and especially the parents and being so close, and yeah, you know, it's doing that two times in a lifetime would be impossible. You know what I mean? It's it's I can't imagine doing that. So, what made you write the book? It was just it was just a matter of of you know, you want to tell a story and have it kind of and you've never written a book before, right? That was your first thing you ever published?

SPEAKER_00 42:35

No, so it wasn't even supposed to be a book. So I again, as I explained, this grief was something I it was so out of reach for me to even figure out what to do with it. Um, so I did see a therapist and she told me to journal. And I was so annoyed at her. I was like, I'm paying you what to tell me to journal? Are you kidding me? Um, so then me being the brat I was at that point, because I was just so distraught, I picked up a pen. I'm like, fine. So I started journaling. And I'm like, wait, this is kind of helping. So then I kept journaling and I kept journaling. Um, and then one day when I realized it was like 90 pages, I called my aunt. And my aunt's actually an editor. So I was like, hey, is this crazy? This is a thought I'm having. She goes, send it to me. So she kind of helped me form it. She helped me kind of like get the timeline, how I wanted it. Um, and kind of helped me bring it to life. I looked into some self-publishing because I just wanted to get it out there. Um, and there was this big pressure I had on me for some reason, just my own thing. Um, I wanted to get it out by October that year because that's Felon McDermott Syndrome Awareness Month. Um, and I was just like, I need to get it out. There was really no rush, but I did. I did it. I don't know how I did it, but I did it. Um, and it's very meaningful that I did that because it's like a pat on the back for myself in a sense, because that was a goal I had for Ethan. I wanted it to be so meaningful and that it it did very well. And I did do a Large donation to the foundation because that was kind of what this was all for. Um and yeah, I still do my yearly donation for them with kind of the proceeds of the book because it was never about anything other than people need to know this boy. He was so cool.

SPEAKER_01 44:18

Yeah. And I I loved I love that the ending and two, all the people who wrote about him and stuff like that. That was really cool that you shared that. Uh, you did a great job. And then the picture of the family at the end was beautiful. Um you did a really good job. You you told it, you told it as uh as um as an RBT and went down and just your you know how you were how you were teaching him and what you went through and in that and then just the struggles of it, and then going down like the timeline and stuff like that was a really good job. So um I I definitely recommend it to anybody who wants a good read. Uh I'll share the link and stuff, and then I'll I'll share any uh any other links and stuff you want to share too and when we post this. And um, I I just want to thank you and the family. Is there anything else that you want to say about it or anything else that we didn't add or touch to? I know we went kind of back and forth in topics, but that's how I like it. I like doing it that way. I don't like structure. I like real conversation. It doesn't bounce, it's not A to Z, but is there anything we didn't cover?

SPEAKER_00 45:11

No, I think this is really special. I think, you know, just under knowing, you know, if you heal hear Phillip McDermott syndrome, you know, you now know a little boy who tragically lost his life, but he he didn't leave quietly, you know, that he he's he's here. I feel him all the time. Um his anniversary was March, you know, it was this month. And it was funny because I had there was just so many signs that day that, you know, he was he was checking in, so many with him and his family. Like we were both texting each other, like, whoa, this just happened. And it was just, you know, he's here, he's present with us. Um and Ethan, everything I did with him, I carry it into all I do. And he was just so monumental.

SPEAKER_01 45:56

Thank you to you, and thank you to his family, and uh congratulations on on his new the the new the new uh the new sibling. And um yeah, I I hope this story can just you know carry on and everyone can listen to it. And I I hope many people hear it and and many people look into uh all the foundations and stuff that we can help and and share. And uh that's this is why what I want to do this for is to to help the you know help share these stories that I feel like it just kind of we don't hear about. I think uh, you know, if this book didn't exist, maybe we you would barely hear about it in the paper or read about it in the obituaries. And I don't know why that is. I don't know why we're not sharing beautiful stories like this of of children who you know went through this struggle and uh you know and had very little life, but the little life that they've had, they got to have some some big impact. So uh I just want to thank you, Sadie, very much for doing this. Thank the family for letting this story uh be shared. And uh please, if anybody wants to to reach out more, I'll I'll put the links up and share everything, reach out to Sadie, bug her, tell her, tell how much the story meant to her, and uh thank you guys for your time. I I appreciate you, and thanks, Sadie. I really appreciate it.

SPEAKER_00 47:01

Thank you for giving his story on the platform. It means a lot to us, his whole family, and to Ethan.

SPEAKER_01 47:07

Thank you. I appreciate you.

SPEAKER_00 47:08

Awesome. Well, I hope you guys have a lovely rest of your night.

SPEAKER_01 47:11

You too.

SPEAKER_02 47:33

I don't think you made any mistakes.

SPEAKER_01 47:36

What would you have done differently than I did?

SPEAKER_02 47:39

Um I don't know. I mean, I I was just trusting you with it because there's no way I would have been able to prepare an interview for somebody.

SPEAKER_01 47:52

Yeah.

SPEAKER_02 47:53

I know it was hard and it was your first one, so whatever mistakes you think that you made, I'm sure next time I don't think I made mistakes.

SPEAKER_01 48:00

I I I liked the fact that like it was perfectly imperfect. Like I like the this the background noise. I just thought Ethan was on the podcast with us. That's how I took it. Like it was like Yeah, like there's feedback, and then there was like not feedback, there was like uh interference, like internet interference, and then like yeah, it sounded like there was like she was in a tunnel sometimes, and I was like, Oh, I I want this to sound good.

SPEAKER_02 48:21

And um I didn't really get too much of that when I listened back to it.

SPEAKER_01 48:24

Well, there you go. It was in my head the whole time, and then I kept thinking it was that, and then um no, and I just wanted to shut up. I wanted her to tell the story. Um and I had notes that I written down, and um, yeah, I I thought she did a great job.

SPEAKER_02 48:38

Did you get through all the notes or did you kind of just let her talk?

SPEAKER_01 48:40

No, I got I got through pretty much all of them. I think I wrote down one other note somewhere, but she could I think what whatever sh whatever I didn't I I don't have it in front of me, but whatever she uh she said something and it kind of covered the notes, so I didn't think it'd be stupid just for me to say it to say it. So um I thought she did a good job. I thought um yeah, it was funny we were talking before it and she was saying like how we have both have like ADHD ADHD brain and like we both like talk and go different topics, and I'm I'm glad it went that way. I don't I wouldn't want to keep this too structured. It was if it went in order, it would have been kind of weird. Um, because I think I would have forgotten more things.

SPEAKER_02 49:14

Yeah, like let's talk chapter by chapter, yeah.

SPEAKER_01 49:16

That would have been it would have been uncomfortable. I think that makes it worse, but um I'm really happy she did that. That was really cool. Um, what did you think of the book?

SPEAKER_02 49:24

Yeah, I liked the book. I liked how it went like she kind of did it by seasons, like fall of 2021 and winter of 2021. It was it was cool like that. And you got to see like whatever progress or reject regressions that he made in like those little times. Yeah, I liked the way it was set up.

SPEAKER_01 49:42

Did you see a lot of similarities with Carson and him and a lot of similarities?

SPEAKER_02 49:45

Um so I think she touched on Ethan's sleep, like within like the second chapter, and everything that she said about Ethan's sleep was exactly Carson, like where he had trouble falling asleep, couldn't stay asleep, his mom would take him on car rides. Like I that was mine and Carson's thing. We would always, always, always do car rides. It would be either, you know, trying to get him to sleep, and then it would be again in the middle of the night when he woke up and wouldn't go back to sleep. So that was something that really touched on. Um and then I think just like some of the things that she was introducing him to in his ABA journey, like the well, he started with an AAC device, but we didn't start Carson with his until after we had tried the PEC system and all that.

SPEAKER_01 50:29

So yeah, that AAC device just sat there for two years by itself.

SPEAKER_02 50:33

Yeah.

SPEAKER_01 50:34

But she going through the PEC system, that was the big thing that that really hit me was the fact that she was doing that and then what he couldn't pick it up and she had to make that towel. Yeah, that was uh that was really rough to read. Um I couldn't imagine that. I couldn't imagine going through that because it's like you have to get not only have to get the kid interested, but then you have to go through and and you have to figure out a way for him to pick it up to show you. It's like being just immobile like that is is it's oh wow. I just feel for the parents too, of both of them, and then you know, having the new baby, and then you know, like she was telling me, how City was telling me how she like she'd be there doing the therapy session, and the mom would be in the room, you know, taking care of a baby, like in, you know, and yeah, yeah, it's rough. It's it's yeah, that's a parent struggle that you know we'll never know. Thank God. And I mean I hope we never know. Um, and I hope I I wish them nothing but happiness. I hope I I I know that's never easy. It can't be easy going through something like that, and then having to kind of start your life over in a sense, you know. Yeah. Um so you really feel for for people like that because you always like, even though we share similar stories, there's always somebody who's going through way more. And it's that's why I'm always like, even like when people tell me about my oh, you're going through this or that, I go, Yeah, but you're going through stuff too. It everyone kind of does, but yeah, this is another level of stuff that no parent I feel should have to go through.

SPEAKER_02 51:54

Um that's why, you know, it's kind of I'm glad that she shared his story because I had never heard of you know feeling mid-term mid syndrome before.

SPEAKER_01 52:01

That was a mistake that I made. I mispronounced that. That wasn't that was a oh what a funny thing. Is anyone surprised that you'd be like, Well, they don't know me, yeah. I must have a disclaimer that I'm like dyslexic, and but usually I'm drinking, so I can blame it on the drinking, and I wasn't drinking this during this. I'm drinking now though. I definitely had to walk.

SPEAKER_02 52:16

Pronouncing words isn't really your strong suit to begin with.

SPEAKER_01 52:19

So it's a good thing I started a podcast to do that. Yeah. But um, no, I'm I'm so grateful, and I I I wish the parents and the family and uh the big family, uh, them all the best and Sadie the best. And yeah, it's really cool that she's doing that for the other kid now. Um I just she sent me some pictures and videos which I'll share that she let me share, and I'll put that on the uh the Instagram and uh post all of it. And just, you know, I hope everyone gets the story. I hope everyone, you know, reads the book and and follows her and uh just gives the family a lot of love and respect. I I think that uh they've definitely earned it and uh Ethan will won't be forgotten. And I wanna hopefully this story will go forever for him. So um anything you want to add or say, anything that I didn't cover?

SPEAKER_02 53:07

No, I think I just think it's you know beautiful that you know she created such a bond with his family and that they're still in touch to this day. And like she said, you try to have your ethics when you're you're RBT and you're working in the home, but when you're there for so long, it it like so many days a week and for so many hours, it's it's hard to keep those boundaries, you know. Yeah. Um yeah, I'm just glad that they're all still in touch and still close.

SPEAKER_01 53:32

Yeah, it it makes it for for whatever silver lining there is, it's it's that it's it's that the they forever share a bond and then they still talk to her. And they even she before we started, I I she said well, I got the parents' consent to talk about all this, and I was like, duh, that's awesome. Like it's really cool that she did that. Because I I I I was like, where do I go? Like, where's where's the boundary of what you know? I don't want to ask a question and make it uncomfortable for them or anything like that.

SPEAKER_02 53:56

But um no, you I think you did a good job. You let her pretty much lead and tell the story.

SPEAKER_01 54:02

Yeah. Well, nothing else we need to add. I think that's that kind of covers.

SPEAKER_02 54:08

No, I think that was that was great. Yeah.

SPEAKER_01 54:10

Okay. Well, I'll play an outro one more time and then we can get on with our lives and uh um and just reminisce. Uh so thank you guys and cheers. And Ethan will always be thinking of you, buddy.