#196 - Family Strategy Solutions for Misophonia
Transcript
Adeel [0:01]:We have Dr. Jennifer Brout, who's been on the podcast before. Mary, who's been on the podcast before. And we also have Liz now, who I'm familiar with over email. Very excited to finally chat with you. And so, yeah, this is a I'm probably going to like kind of step out a little bit, but I would love to. I'm very excited for this conversation between these three individuals, experts on misophonia. And I think you're all in for a treat. Jennifer, I think I'll hand the mic over to you.
Jennifer [2:19]: Thank you, Adeel. And thank you for having us on the podcast. And just to explain a little background, we're orienting this towards parents. Maybe we'll call it the parent podcast, but this is our first time doing it. So thank you, Adeel. Thank you, Mary. Thank you, Liz. I'm Dr. Jennifer Brough, but I'm also here as a parent and a person with misophonia. And for those of you who don't know me, I've been involved in misophonia research and helping those with misophonia way back before it even had a name. Misophonia runs in my family. I have a grown-up daughter with it. And with that, I'm going to ask both Mary and Liz to tell us a little bit about them.
Mary [3:12]: So thank you for that, Jennifer. My name is Mary, and I have a 21-year-old son named Thomas who has misophonia. And I also have two older kiddos who are 25 and 27. And in another part of my life, I'm a college professor. I teach gender and women's studies and English. And I come to this conversation and also being the parent of a child, now a young adult with misophonia, as someone whose academic interests were in, ironically, coincidentally, medical knowledge production and how we create definitions of diseases. So that was something I was studying and interested in. in and then found myself able to put that to real life application. So that that's me. And Liz, I will turn it over to you.
Liz [4:13]: So good to be with you guys today to be able to be here chatting. So my husband and I have three kids and three members in our family have misophonia. So my husband has it moderately. And my 20-year-old daughter has it somewhat moderate, but it's for sure growing. And then my 15-year-old daughter, I think, has it the most severe out of the three in our family. So I think we've known about misophonia for about 10 years now. And of course, we're still learning about it as we go on. So as far as the kind of work that I do, I actually was a teacher for many years before I stayed home. But about a year ago, I started getting into being a Spanish interpreter. And the interesting part is I'm interpreting mostly in the school setting, like in special education meetings, which is really interesting because I've been able to start kind of seeing some accommodations that are there for our kids that have misophonia. But the other interesting and neat thing I've been able to do is I've been getting to talk with some school psychologists who'd never heard of it before. I really have enjoyed getting to talk with them and kind of share and help them learn a little bit about it too. And hopefully it'll help those other kids that don't know yet. So yeah, I'm just grateful for this opportunity to be here today. That's a little about me.
Jennifer [5:39]: Thank you, Liz. And thank you, Mary. We had thought that we would start with some general questions that we asked ourselves. that we think other parents would be interested in. And I'm gonna start with a question to either you or Mary or Liz. And here's, that's a pretty profound question, but I think it's good to just roll with it. Did you experience different stages of either grief or level of understanding that you had to go through following the misophonia diagnosis of your child?
Liz [6:23]: You know, Liz. Yeah, this is Liz. Yeah. This is the interesting thing is I'm the type of person when I try to understand something, a lot of times I'll just take little notes. I'll jot notes down just to kind of process through what I'm seeing, what I'm trying to understand. And so quite a ways down the road of our misophonia journey, I started writing down what I noticed for us personally, for my family. the stages that we went through, and maybe some other families can relate to this, but I was just going to read kind of what I jotted down of the stages I noticed our own family had to go through. I think the first stage is kind of ignorance, taking things personally, lots of tension between the family members, how to hurt feelings on both sides. There was just an ignorance at that time. We didn't know what it was. And then it moved to knowledge. the next stage but it wasn't still a complete understanding of it or the seriousness of it you know we thought oh it's a personal preference he's left-handed she's right-handed this person has misophonia this doesn't you know we still didn't completely understand but it was we were growing right we were learning but i think the next stage is pretty critical one it's kind of a fork in the road at that point i think um that families can go to at that point you either go to the side of denial and refusal to accept it or no empathy or just indifference to what your child is feeling, unwilling to compromise and accommodate, or you turn to the other side and you start accepting that things have changed in your family, starting to grow in a deeper level of understanding of it, and even coming to that point that we were talking about earlier. grieving what you realize is lost at that point, what you your ideal, what you thought would be for family has changed at that point and coming to acceptance of that, coming to a realization of that. And then I think the next stage that we went through is coming to peace with the new normal in our home. And we began trial and error of trying to help our child in the house. And it was definitely trial and error. messing up many times trying to figure it out as we went. And lastly, you think you have it down somewhat in the home. Now we're branching out to other places, right? How do we go in the car together? How do we go to different locations? How do we all go to a friend's house together? What does that look like? And it's just a constant growing process. But that was my family. That was our experience of kind of stages I reflected back and that's what I saw. So that was me. What about you guys?
Jennifer [9:11]: Liz, I just have to say that is such a perfect way of describing it, and it's organized and efficient. I really commend you for doing that kind of introspective work. Thank you. Mary?
Mary [9:27]: Well, and also for multiple family members. So I'm sure, Liz, when you found out about misophonia, it wasn't just with one kid like it is for most of us. It was everybody. So everything had to change. I can and I can't imagine how tumultuous that must have been. You know, for us, you know, when we found out that what was driving Thomas's aberrant behavior or I thought his behavior was rude and, you know, mostly he avoided me. He didn't have... any real outbursts or anger. He seemed to internalize things, but he would not be anywhere near me. He wouldn't be in the same room with me. He wouldn't look at me. And we went to a psychologist who told us that this was misophonia. And I was in denial. I did not believe this could be happening to my family. I could not believe, I could not accept that my son was being damaged or harmed by my presence. You know, that he was experiencing physical pain, revulsion, whatever a trigger feels like, that the sights and sounds of my body were doing that to my kid. I refused to accept it. I thought, no, I'm just going to fix this. We will find a way out of this. Thank God we know what it is. And now that I know what it is, that rule that this is intractable might be for everyone else, but I'm going to find a solution for my child. And that was my beginning. And that, you know, in retrospect, everything is 2020, right? In hindsight, I feel like that attitude, my son picked up on that attitude or he shared it. And he too felt like he was going to get rid of his misophonia. and that proved to be and he was 15 when he adopted that attitude when he learned what this was because he could remember his life before you know when he was 11 10 and um we went through an initial really painful period all of us as a family of trying to find a way out and that was really hard and i wouldn't recommend it but we did it we did it this was in 2019 And even though little information is out now and even less was out when Jennifer and Liz, perhaps you guys first discovered things, you know, still there was very little. And then after that denial and combative era, it just grew into more combativeness because. anger. I was angry. I was so angry of the world that this was happening because I'm my son's most virulent trigger. And even to this day, it is extremely difficult for him to be in my physical presence. And so we really have to navigate that. We've learned a lot of ways around that to some extent. But the fact is, sights and sounds coming from me in many different ways trigger him. And I was just angry about it. Then I was depressed. I cried myself to sleep for weeks. I just, it was the worst. And then finally I accepted the reality of the situation and how unfair it was. It just was so unfair. It still feels unfair. But we definitely went through those cycles. And it's interesting how one person's emotions and perspective can kind of pull along the rest for better or worse, which is kind of a global lesson in the world of misophonia, you know, generally. So more on that later, I'm sure. So Jennifer, I don't know about you, but did you experience misophonia?
Jennifer [13:55]: My experience, it's so interesting. When I listen to both of you, I'm reflecting on how very different my experience was so you know first of all i had to have triplets so when they were babies it was just i don't even know what i was feeling i was just doing so i was kind of thrown into the chaos and when my daughter started to demonstrate the symptoms of what we now know as misophonia as i was watching her I'm thinking to myself, huh, she's responding to sound and some visuals just like I do. So I immediately knew this was something that was different and that did not fall into the realm of any... I should also say I was studying psychology at the time. Okay, so I knew this didn't fall into the realm of any... mental disorder I'd ever heard of. It was certainly not any neurological disorder that I had ever heard of. It was not medical. There was nowhere to find. And that's still the case. We don't know what misophonia is or how to classify it. But my immediate reaction was okay i'm going to get some help like everybody else right you want help you want help and so i went to psychologists and i'm trying to explain to psychologists as i am becoming a psychologist it's not a mood disorder it's not adhd it's not it's not i'm telling you it only happens with sounds and certain visuals and they people just were like told me I was crazy. So I got mother blamed. My child got victim blamed. It was just awful. And there were times I even thought to myself, what kind of a field did i get myself into that like nobody believes me so i went through a lot of emotions but they were more specific to how am i going to help my child and how am i going to preserve the relationships with her co-triplets that's where my mind went immediately and i think at the heart of all of this, I feel, as a parent and from working with other parents, that preserving the family relationships in the face of misophonia is often one of the greatest concerns. So I'd love to segue into that a little bit. Maybe... mary you could talk a little bit about you had said that your son you've have workarounds for communication and that to me is preserving your relationship and i would love to hear you tell us a little bit about how you did that and then liz perhaps you could do the same
Mary [17:01]: Yeah, you know, that preserving family, that became the immediate, once I accepted what was happening, right, then immediately it was, how can I help my child? And how can we all be a family together? You know, how can he have relationships with his siblings? How can he have a relationship with me? So Thomas is triggered by all family members. including his two siblings and also his parents. And so one of the things that we did in order to preserve all the relationships in the family, a decision we made was to fully accommodate misophonia as creatively and thoroughly and kind of cheerfully. and matter of factly as we could just like we might accommodate you know my preference or need for left hand or right or whatever you know basic fundamental things and so for for thomas this mean meant that i respected that he didn't want to see or hear me and that i wasn't going to be able to talk to him and or see him at least right now And we we texted a lot in the beginning. And really, that was the text and email, but mostly text. And I also because Thomas was pretty isolated. You know, a lot of people have this experience. Their kid with misophonia is in the bedroom all the time. And Thomas Thomas's bedroom is on the third floor of our house. And. so he there's a lot of isolation and so i every uh week i put pictures of the family in in on the third floor and i changed the pictures every week so he would have a rotating cut and wrote little notes about what had happened so he would have be surrounded by those family things and then i made sure to like a little free small gifts for the third floor all the time with little notes. I tried keeping a notebook for us to communicate in, but he would have none of that. And I actually got that idea from Marcia Johnson of the Misophonia Association that you use a notebook back and forth. Over time, Thomas's triggers and the way his misophonia operates has changed and it is easier for us and we've also developed some skills. So now he can talk to me from around corners, I can stand upstairs, he can be at the bottom of the stairs and I'll check in with him and say, is it okay if I talk today or do you want me to text? And he'll just say, you can talk today or you can text. So it's slowly improved and changed. And at every point along the way, we just communicate about how we can communicate in order to keep those changes going. And so for me and for My son, especially. It seems strange, but keeping our relationship strong and powerful relied on accommodating misophonia. I really believe that. I feel as if if we hadn't, things wouldn't be this good. So and I feel like Thomas and I, in many ways, are very close. We communicate a lot. But we've lost a lot, too, in our relationship because of the physical piece that we don't have right now. So, yeah, lots on mom and that relationship. And I can talk later about the kids. But I guess, yeah, Jennifer, how did you preserve those relationships?
Jennifer [20:51]: I just have to say, Mary, that the idea of putting a family photo and changing that on the third floor, it almost made me cry. I think that is... Just an amazing thing to do. And I hope a lot of people are listening just because something I never thought of, and I'm sure a lot of parents haven't thought of, wow really oh thank you thanks it's really amazing what parents can do in the face of this you know just invent ways to be more intimate with someone and let me back up a little bit and say that one of the questions people ask me all the time is why do triggers fall on a particular person or more on specific people in the family, why, why, why? And I have never been able to answer that. And I will tell you about my experience and then we'll hear Liz's with preserving the family relationship. But I do just want to make it clear that as we have studied misophonia more, if you look at, say, Heather Hansen's work, which I would recommend everybody do if you're a parent or if you're a person with misophonia who's an adult, so heather has made it very clear that the triggers sounds and sights are not just necessarily people oriented nasal or oral facial oriented they do exist with non-organic sounds and sights. Now, I inherently knew that. So if you're going back to the 90s, the mid 90s, late 90s, I knew that because I had it. And I was also, I guess, somewhat introspective since I was studying to be a psychologist. So what I immediately did to preserve the relationships was say, it's the sound, it's the visual, it's not your brother, it's not your sister. And I just kept that narrative going. And I could see, I mean, it was literally like a mantra in my house. It's not your brother. And I made it, no one ever said. My daughter never said, nor did I ever say, he's triggering me. I would always say, this sniffling is triggering, whatever. I don't think we were using trigger back then. It was just bothering me. And my daughter, when she started to show these symptoms very young, and I was very lucky because I... in my my quest for help was able to find occupational therapists who work in a very different way than psychologists and they work on self-regulation through the sensory system. So at the time, we found a name for this, which wasn't misophonia, but was auditory over-responsivity. And in hindsight, it's not the same, because auditory over-responsivity is more general. It's not really these specific types of sounds. But we at least had some practitioners who were willing to help, who were not telling us we were crazy. That was hugely helpful to my family. So it wasn't just me saying, hey, I kind of get what this is. It was also kind of a foray out of this psychological paradigm and into a more neuropsychological paradigm. paradigm neurophysiological and when I started the programs I started that's where I was coming from so I guess you know I feel as though we very luckily avoided a lot of pitfalls not that it was I'm not saying it wasn't chaotic and that there weren't really bad times but somehow we were able to all preserve the relationships and I think again My story is so different from Mary's. How about yours, Liz?
Liz [25:11]: Yeah, you know, it's funny. When I was first learning about this pony, I'm trying to come to grips with what is this, you know? And I was reading that usually it starts with the parents being the ones that are the triggers for the kids. And it's more of the person that's closest to you. I tried to flip it in my mind because I think us as parents have to change how we're thinking about it. I said, wow, I must be loved a lot because I'm causing all these people to get trapped. I must be the one that's loved the most. I get that job. So I just try to change it in my mind. But not only that, I try to... realize it's a condition it's not my child it's not us against them and i'm sure you guys have played some of those team building games over the years where like your team is on one side of the room and they pretend the floor is lava and you have to somehow get to the other side of the room and they like give you paper and all of you have to somehow help each other get to the other side of the room that's what we're doing as a family we're together trying to get you know keep going forward as a family we're all trying to help each other get there it's not us against them it's this thing misophonia we've been thrown a curveball we can do this together we have to you have to start looking at it differently as a family you have to not do us against them type thing but instead how can we help each other how can we be there for each other what can we do and especially as you guys were saying accommodating uh we had to delve into that world i didn't know what we were supposed to do it was a lot of trial and error in the beginning um but we like like you guys had to start getting creative so uh we use a lot of text just i think it's important wow i think about how do they do it without text but that's another so you know a lot of times what i realized is learning about it that you know the person's on edge they're scared that a sound's coming around the corner at any second so we just developed this thing of if we're going into the kitchen to get something, we tell my daughter, if she's downstairs, we'll say, Hey, I'm going to get this out of the fridge. I'm taking it into the bedroom. So we kind of try to always, Hey, I'm going to do this, but I'm not going to eat it here. Hey, I'm getting a glass of water or, Hey, I'm going to eat right now. Would you be able to go upstairs for a little bit? We're constantly telling her beforehand. And I tell you what it has helped bring down, the anxiety level in her so much. So, and then not even that we, we put into place of if you're upstairs and I'm going to start eating, I'm texting you, I'm going to eat right now. She'll say, okay, tell me when you're done. Okay. So it was just a lot of texting back and forth just to try to bring down that anxiety level. And, you know, she told me a while back, mom, if you guys, I'm so thankful that you guys started accommodating for me. I hate to say this, but if you had not started accommodating for me, I think I would have started hating you.
Jennifer [28:14]: Oh, yeah.
Liz [28:18]: Saying is, I don't want to hate you. I want to love my family, but I need help. I can't do this on my own. And so that's part of it, right? Of realizing not. Realizing it's the condition. It's not your child. It's not you. You don't have to feel guilty either side. We're trying to muddle through this together the best we can. So, you know, my husband and I just, we pray often to God, just asking for guidance and wisdom on the next step. What do we do next? And we talk, I talk to my girls a lot about what do you need? Sometimes I won't ask them because sometimes, I'm sure you guys have experienced, they don't want to talk about it, like verbally talk about it. Or just observing your child. What do they need? Oh, I see they ran off when I did it. Okay, we got to think of something, a different way to do this. So it's trial and error. And we have to give each other some grace as well because we're trying the best we can. And I told her, no, you don't have to feel guilty. You're trying to figure out how to deal with all these things going on inside of you. And we too are trying to learn too. So to preserve those family relationships, It takes both sides and it takes changing the mentality of how you're thinking about this situation. And that's a lot of work. That's hard. That's not easy. I'm not saying it's easy and it's not perfect all the time. Right.
Mary [29:43]: You know what, Liz? That also reminds me of something we never really talk about. This might be kind of a radical thing to say, but I think that preserving family relationships also asks parents to get their act together a little bit. Like if you... Do you need to go to therapy for yourself to deal with a few little things that are going on? I mean, that's the thing that we had to do. I mean, we had other family dynamics that were not productive happening in our house before misophonia. So those pre-existing family dynamics that were not productive. contributed to suffering of misophonia. So I went to a therapist for myself and it called upon me to look at my own life and behavior as a human and parent. And was I doing the, was I being the best person I could be in terms of helping my family? Now I'm not saying everyone, I'm recommending people do that, but that was our experience that it really did take, um, cleaning up any old business underneath the misophonia, bringing that out and taking care of that with honesty.
Liz [30:59]: I'm so glad that you shared that with us because it's the truth. It's us having to deal with... all of our mentalities and mindsets before we get into this. Right. I was thinking even after we got into it, I realized, you know, the child after they've been triggered has to have time to go away and kind of regulate and kind of come back down. But I realized I, as a parent, I have to step away and regulate afterwards too. And how does that look? That is me telling myself, hey, remember, Liz, it's not you. It's not purposely driven at you. She doesn't hate you, Liz. Remember, this is going to pass. Give her some time. It's going to be okay. This isn't the end of the world. You can get through. It's just talking myself through calming down because the emotions are so intense, even for the parents at that time. So learning ourselves as parents to... tell ourselves what the truth is in the moment and kind of bring ourselves back down is important as well. Don't you think Jennifer?
Jennifer [32:00]: Oh, absolutely. I think, you know, Liz, first of all, one of the things you said that I would love to point out is to understand the situation as the condition, not the person, not yourself. And I think that was a really important statement. And I think it brings up, there was a question that came to mind as you were both talking. We talk a lot about accommodating. We talk a lot about dinner. I personally gave up on dinner really early on. I was like, I don't care. And I thought to myself, there's other ways for the family to be together. So dinner was quickly... just out of the picture and i and i don't think it made a difference at all in terms of the closeness of our family members but i know that some parents don't feel that way so i'm just saying how i feel but i'm wondering also liz in your family and and with you as well mary there are times one cannot accommodate And that, to me, is the hardest thing for the family to deal with. So, you know, we can disband for dinner. That's fine. And people always ask me this. What do you do when you cannot accommodate? And I'm interested, Liz, because you have multiple members of your family who have misophonia. What happens when there's conflicting accommodations, conflicting interests? What do you do?
Liz [33:39]: I was just thinking about... a specific trigger is the blinker in the car.
Jennifer [33:46]: Oh yes.
Liz [33:47]: How do you accommodate that? Okay.
Jennifer [33:50]: Oh yes.
Liz [33:51]: When, when, when, when we're okay, we live in Houston. Okay. They trap it. Okay. I don't need to say more than that. So, you know, at times there's no accommodating. Okay. They're just, we have to, at times there's no one around and I can see and it's okay. And I just don't put on the blinker, but, I'll have to tell her I'm putting the blinker on, you know, and she'll do something with her ears and try to muffle out the sound somehow. But I think just telling them, I'm so sorry, I have to do this. It acknowledges that they don't like that. They don't want to have to be put through that, but they know there's no other way to. It's just it's it's a difficult line to walk, isn't it?
Jennifer [34:37]: It's a very difficult line to walk. And I think letting what you're saying, Liz, is I'm acknowledging how you are going to respond. I'm giving you as much of a warning as I can, which sometimes also we can't do.
Liz [34:54]: Correct.
Jennifer [34:54]: Yeah. And I think. Even though the reactivity, the sort of internal physiologic reactivity to the sound, and I can't stand the blinker either. Like when I'm driving, I will turn it off. When I'm sitting at a light, I'll turn it back on when I have to. It's so interesting you should mention that. And here's a great example of a non-organic trigger. repetitive sound that is not coming from a person but what you're saying that is so meaningful is i acknowledge and again the physiological reactivity to the sound or to the site whatever it might be may not change for the person but what's happening i think is you're not you're scaffolding your child so it doesn't escalate. So if you are having a physiological response to a trigger sound, and we all know just the efficient, easy way to say it for now is that you're misinterpreting the stimuli as toxic or harmful and going into fight or flight. So it's hard to change that reaction. But if a child feels... that they're not being acknowledged, then they're going to feel really unsafe and it's going to escalate. They really are unsafe in the environment. So you have this perceived lack of safety and then you put on top of it, no one believes me. And guess what? We only have one sympathetic nervous system. it reacts to things the same way so you're going to put nervous system reactivity on nervous system reactivity and i like to look at it like that so that we can see how the psychological can help the physiological but also we have to see the limitations of it
Mary [36:46]: Yeah, I'm trying to think about, you know, honestly, I think if we were unable to accommodate Thomas, we made it okay for him to do whatever he needed and wanted to do to keep himself safe and comfortable. Including not being part of something, leaving in the middle, going to a different room, wearing headphones and earbuds. We just made, we gave him, I guess, we gave him as much control as possible. So if we were going to be in a triggering situation, we gave him permission as parents to exercise agency and control and do whatever he needed to do to leave or mask the sound. we we those situations for for us have been i mean just not being a it's a tricky line because you know if you want your kid to be with you and your breathing triggers the kid so you might want to say you know what can you do to mask the breathing And that that is a trigger that you can't accommodate, right? Okay, so is my breathing a trigger, which does trigger my child sometimes. I guess because we can't accommodate that, we just told our kid it was okay for him not to be around that trigger. And I guess that is also accommodating in a way, but I just don't expect my son to sit next to me and be triggered by my everything.
Jennifer [38:26]: And there's nothing you can do to stop it. You know, so.
Mary [38:29]: Yeah. It doesn't even feel like accommodation, to be honest. It just feels like essential way to treat someone with compassion and dignity, you know, as a human, if something is hurting them, you don't make them do it. That's right.
Jennifer [38:49]: That's beautifully stated, Mary. And I wonder, I know that this happens to a lot of parents and I know this happened to me. And it was just so maddening. And I'm hoping it's not as bad today as it was in the late 1990s. But I was told if I accommodated, I was indulging. To this day, just even making that statement, I feel like chills going up and down all over my body because it makes me so upset. And I'm wondering if you both have experienced that. And if so, how did you as a parent say, wait a minute, I know what I'm doing. You don't.
Liz [39:37]: You know, I talk a lot with my daughter off and on when she's in a good place. And she told me, do people really think I don't want to eat with my family?
Jennifer [39:48]: Right.
Liz [39:48]: Is this something I... I mean, do people think I really don't want to eat with my family? Is this what they're thinking I don't want to do? Do I want to be able to give up all these things? I don't. I would so much rather be able just to live a normal life and do what I need to do. That tells you right there, it's not just a picky little bratty kid. I don't want to, you know, it's not. And so she's told me, you know, she's at the age where she can voice and make herself understood of, I don't want this, but there's no other way. You know, so.
Jennifer [40:22]: That is such a great statement that your daughter has made. And I will say my daughter made a similar statement. And she looked at me after many people had said, you know, you're indulging or you're making this up. There must be another reason. And my daughter just looked at me and said, who would make up this ruse? That was so true. Really, if you're going to control the household, that was always it. She's trying to control the household. I'm like, no, she's not, and neither am I. But it was still just, there was such a rigidity in the way that psychologists, not OTs, were thinking at that time. And it is, if you were going to try to control your family, really, that you would make this up or you would utilize this? It's crazy.
Liz [41:15]: And you know your child. This child I'm talking about hates conflict. Hates it. Just wants everything quiet, gentle, smooth. She's not the kind that wants to take control. She's not the kind that wants to grab the leadership. And she's not. So as a mother, as a parent, you know.
Jennifer [41:36]: Yes.
Liz [41:36]: Know your child.
Jennifer [41:39]: That brings me to another question that I'm going to ask you, Mary. I think what we're talking about here, to some degree, is how do you use your, I don't want to say parental instinct, but how do you reassure yourself that you're doing the right thing when you have some, quote, experts, quote, what have you, telling you you're not doing the right thing. How do you deal with that, Mary?
Mary [42:18]: Oh, you know, okay, first of all, I get so angry at the trend in research, misophonia research, that pathologizes accommodations. There are research studies that call accommodations symptoms of pathology. And I mean, is using a wheelchair a symptom of pathology? Using hearing aids a symptom of pathology? Or of interpersonal dysfunction? It's maddening. And that trend, I think, in the research, and this means in how psychologists are going to approach our families, That's out there, that accommodations are problematic and not that they're essential. And for me, I'm angry right now just thinking about it and kind of like fired up because I tell you what would drive me. I can see. how devastating the sound of my voice is for my son. He flinches, he makes a noise, his face changes. I can physically see his real visceral suffering. He doesn't want to be doing this. I don't want to do it to him. And I do not want to expose myself to watching. him suffer because of actions I can prevent. The suffering is so physical, physiological, all encompassing. It is very real. And to suggest that accommodating that, recognizing human suffering like that is wrong. uh i i it just it's it it's incomprehensible to me and yeah and it also you know it's part of the this you know conflicting beliefs about whether or not misophonia is kind of a neurophysiological thing that people like epilepsy or migraines or an interpersonal dysfunction. And as someone living with misophonia and watching how it manifests itself, I'm just going with the hardwired neurophysiological thing. And does it create interpersonal conflict? And do personal problems also fuel it? Yes, absolutely both. But we can't, like, transpose that psychological element to the body's organic function.
Jennifer [45:07]: I love the way you said that, Mary. Write that down, Mary. I agree with you. This is a neurophysiological response that affects relationships. And can a relationship affect responding? Yes, but it is not by nature an interpersonal conflict. So the way you said it was better. And while we're talking about this, the other thing that I hear a lot, and I would love for you to both say how you have handled this, avoidance behavior. I hear a lot and I see it a lot in the research and I'm going, well, of course you're going to try to avoid that which is severely unpleasant or even slightly unpleasant. Why are we pathologizing avoiding that which is, you know, so threatening and averse? So have you heard that also, Liz, in terms of just your own readings and how does that strike you?
Liz [46:16]: You know, it's interesting because what I think is if they're saying you shouldn't allow your child to avoid certain triggers. Where have they seen that they put the kid over and over into the same trigger and it's worked out and the misophonia has been cured and it's all worked out well and it's been the best thing and it really helped. If it is, sign me up. But I just have not ever, I've never seen that happen. So it's bizarre because all you have to do is, okay, do it over and over and over again. What happened? Did you get good results? I've never heard that.
Jennifer [46:49]: Absolutely.
Liz [46:50]: I've never heard that. So why am I going to do that? Right.
Jennifer [46:52]: Yeah. Yeah, that whole idea of, I mean, the fact is that, and I think this is a great moment to repeat something I've been saying forever. We don't, people with dysphonia don't habituate or desensitize to the sounds or the visuals. In fact, we sensitize. So there is no reason to expose somebody. when you don't have to. And I mean that in terms of a therapeutic paradigm and also just in terms of daily life. And I think that somehow instinctually you knew that, Mary, you knew that, Liz, which is great. But I feel there are still a lot of parents out there who may be thinking, well, this is interesting. I've heard people say, okay, we've tried everything else. Now maybe it's time to try exposure therapy. as though exposure therapy is uncomfortable, but it works. And it's really important to get the idea out there that it doesn't work and it's not a last resort therapy either. It simply doesn't work. So I wanted to make that point because it's something that comes up in my life.
Mary [48:20]: know i could say uh just a quick something on avoidance and exposure therapy avoidance is just so tricky and hard and listen it comes back to what your kids have said do you think i want to give all this up and you know like so for us when my oldest son got married there was a big groom's dinner and uh our son with misophonia had to decide whether or not to avoid that or to go to it and you know when it comes to avoidance just like i would want control and agency over exposing myself to things that are physiological difficult for me we just let him have that control and we told him it was okay to not go to any of the wedding any of the really with great pain you know we we told him and his brother and and future wife told our son that too but he did he he did he he he went through everything and it was clearly really tough for him at times but his desire to be there and it was in a space where he could leave and take care of it we The venue was misophonia friendly. The wedding was misophonia friendly. The entire evening was misophonia friendly. So we built in ways to reduce the need for avoidance. And then we accepted the avoidance as it happened. So that was one kind of family event. And then the thing about exposure therapy, I'll share our family's experience with that briefly. So our son tried exposure therapy specifically for misophonia and he spent the next 24 hours locked in his bedroom calling suicide hotlines. Because he began to trigger himself. And it was an immediate reaction to the exposure therapy. He was unable to move his hand without being triggered. Can you imagine that?
Jennifer [50:24]: So hard to deal with.
Mary [50:25]: Yeah, it was... is very hard to even talk about still. It's the worst weekend of my life. So I know that not all people react that extremely, but for that particular 16-year-old kid, two days of exposure treatment for misophonia was that devastating. And as a consequence of that, then not directly, but we were part of this endeavor. Now, whoever now answers suicide hotlines now knows what misophonia is, because when that happened for our son, no one had heard of that. But thank goodness they have the skills to, you know, he told us that he wasn't. He said, I didn't want to end my life. I wasn't suicidal in that regard, but I didn't know who to talk to. It was so awful. My life was ending. It was out of my control, the ways in which my life was ending before me because of my misophonia. That was more why he called. But nonetheless, it was that bad. And I know that's kind of a hard topic to bring up, but it's real. And I'm glad you did bring it up.
Jennifer [51:47]: And I think, you know, it can be that severe. And, you know, I think it's important to mention, and I have a question then related to this in your household, Liz, there's different levels of severity. And I think what we've learned here today is that no matter what the level of severity, there are ways that you can preserve the relationships within the families. There are ways to accommodate. When there are not ways to accommodate, being respectful and kind and empathic goes a long way. I think. And Liz, in terms of different levels of severity of misophonia, I'm curious, what is happening in terms of your multiple misophonia household? I know my daughter's and mine, I think a little less severe than she is. but i'm also at an age where i really can control my environment so that makes a lot of difference or just at a place in my life where i can really control my environment so i'm not really sure but what do you see with your kids with different levels you know it's so interesting because i have three people in my home misophonia each one with distinct and different types of triggers it's so
Liz [53:21]: And I'm sitting here kind of watching. It's my own little laboratory here. I'm kind of watching how it all works. And it's just fascinating because it's a mystery. I don't understand it all. But, you know, my husband and I have talked a lot about when you have to accommodate for others. It's difficult. It's sacrifice, isn't it? And it finally dawned on me. and I was talking to him once, I said, you can either have your rights or you can have the relationship with your child. So you, that's how it is in this condition. You can have your rights. I should be able to eat where I want, when I want. I should be able to drink and do what I want. I shouldn't have to, especially adults, right? We think, hey, I shouldn't have to bend for any, I'm the adult here, you know? So, okay, I think it comes down to a point in a family That you're going to have your rights or you're going to have your relationship with your child. Which do you want? That's hard. I know it's hard. It's hard because I hope, I really hope that us as parents, we want that relationship. So we're willing to give up some of those rights that we feel like we should have. We're willing to sacrifice. And as adults, we have to sacrifice. We're modeling to our kids, right? And we're modeling to the other kids in the home. Oh, mom takes this seriously. She goes somewhere else. She cares. We're teaching our kids so much through this, right? And with time, they start to become those who sacrifice and care for others and have empathy as well. And so it is so important as parents what we do and always remembering, yeah, it is my right. I should have my right to eat right here in the kitchen if I want. But I value my kid more. I want that relationship. So this time I'm going to go to the bedroom and they can stay out here and do what they're doing. Once again, I tell you, it is not easy. It's a long process.
Jennifer [55:22]: Yeah.
Liz [55:23]: Learning to let go of learning to let go of what you feel should be family dinners. We must have a family dinner. I've heard so many times different parents. It's just so grieving. It is grieving. I agree with Mary. I cried so much. in the beginning when I was trying to come to grips with letting go, but I'm thankful. I'm thankful that we've learned through this. I'm thankful what we've learned through this. It's not an easy road, but you learn so much through it.
Jennifer [55:51]: Thank you, Liz. As we're coming towards the end here, maybe we could just briefly talk a little bit about family activities that you can do now that's going to be different for every family right but i always tell i guess because i was so easy to give up dinner uh you know and just realize there's other family activities we can do who cares but since many parents just don't feel that way do you Both of you either have other activities, maybe even an activity such as Mary bringing up a photo and changing that photo, or maybe there's physical activities. Can we just speak to that a little bit? Because I feel that parents listening would probably want to know that. Mary, what do you think? I'll let you go first.
Mary [56:44]: Yeah, well, so we really started grappling with misophonia when our kids were older. I mean, our son began experiencing misophonia when he was 11, but we didn't know until he was 15. And so I think we just really weren't like a big family activity family in many ways, I think. But the activities that we had, like holidays and things, We just did on different floors of the house with video cameras and cardboard boxes. And, you know, I mean, so we just we were creative in those in the house. But I know that I mean, this sounds a little weird, but this is just how it worked for us. My son was an avid squash player, and so was my husband. And it turns out that playing squash and being in that physical, loud environment with all that, that is a safe haven. It did not. And it was physical activity. So squash burns 750 calories an hour. And it's a very intense game. And this is what it was. actually he lived there i mean our son went to that squash club every single day he was there from the time school got out until he came home and it was just a safe place so that kind of thing and also doing even for household chores and contributing to the family together yard work where you're outside doing a project where we had to repair a fence. You're busy on your own. Other people are around. So we would just kind of move those activities there. And I think one final thought on that, with the other kids, sometimes we forget about the other kids. So what I did for my older son after the misophonia diagnosis was he had an earlier school time than the miso kid. I always got up at 5 a.m. because his bus left at 730 or something. But I made him a big breakfast every morning, bacon and eggs. You know, a kid without misophonia, the oldest. and so we were able to have that time over a meal together we began sharing breakfast together and so i found other family activities for the rest of the family and you know which kind of you know reminds me and where we are drawing on an hour so i'm going to ask each of us to comment on one final thing and then then we'll close but just about um how this experience has changed me how being the parent of a child with misophonia has changed me is that i have become much more flexible and attuned to the needs of others than I was. I used to think of myself as a sympathetic person. Oh my gosh, I wasn't. I really wasn't. But now I am humbled by how little I know about how much how much suffering invisible suffering exists in the world and how much power i have through simple acts of empathy and kindness to alleviate the suffering of others and this kind of principle of being in the world this way of noticing that and responding with kindness and empathy and being attuned to these things has literally changed everything about who i am and my life for the better And it is not a silver lining. I would give up everything if misophonia did not exist. But it is how I have changed. And I'm also a sadder person. more somber person, unfortunately, because I live with the grief of loss in a way that I never imagined I would. So Jennifer and Liz, I wonder, how have you changed because of misophonia in your families? And then we'll say goodbye to a deal after that. It's so interesting, again,
Jennifer [61:26]: i guess my experience was very different just because i had three at once and i feel as though i just went in and did and did and i maybe i didn't reflect as much of my feelings as i should have i think for me well i will say this as a person studying psychology at the time and eventually graduating, I thought the day that my kids were born, everything I thought about parenting changed. And I thought, oh. this is and seeing also how different each of my kids were from one another i thought okay everything i thought is out the window just from the beginning forget when the misophonia started but i just thought you know wow i as what i was learning in psychology was so you know, not that some of it was applicable, but just in general, okay, I thought, oh, I'm just in the chaos. And I think the way it changed me the most was in terms of how I look at life and people, I really separate out what's a physiologic reaction and what is an emotional reaction. and that was just cognitive. And for me, that was really important in my own misophonia and helping my child with misophonia. I would say the biggest change for me is that Misophonia set me on a path to start research programs, to study and study, to learn from others, and to try to integrate great amounts of information to try to understand something of which there was no understanding at the time. And I think being an advocate and being involved was probably my way of coping. How about you, Liz?
Liz [63:41]: Yeah, you know, it's I look and think, wow, you knew from the beginning because you yourself experienced it. And that's so good because I think I oftentimes think of how we started in our family is the train was moving and we were running, trying to jump on, you know, because it was so new to us. And I guess I I just want to say to all the parents out there that are listening, it's it's never too late. to start turning things around, to start doing things different, to start building that relationship better. One thing I realized partway in with my younger daughter is I need to tell her often how much I love her. I need to tell her often what a wonderful person she is and how thankful I am that God made her because she needs to hear that. She needs to be reminded of that because I know a lot of times they carry a lot of guilt and they feel down and they feel depressed. And that's something I can do to pour into her. And so I just want to give hope and encouragement to other parents. It's never too late to start kind of mending those relationships. I mean, all of us have had to mend different issues and things in our families. It's never too late. And just my hope and prayer that, you know, you're encouraged and you find some hope along the way.
Jennifer [65:07]: That's a wonderful thing to say.
Mary [65:09]: Yeah, that's beautiful, Liz. So true. Thank you. That was great to talk to you guys. Thank you. Thank you, Adeel.
Jennifer [65:17]: Adeel, you've been so quiet.
Adeel [65:23]: Sorry, I was trying to unmute. I'll delete that part. So I won't say much except just to say thank you. Yeah, and this is going to help a lot of people. I'll look forward to the next one. And anyone who's listening, please send in questions to Jennifer, Mary, Liz, myself, and I'll relay the questions on because I think I'm sure you all have lots of questions or maybe even just anecdotes to relay and all that helps.
Jennifer [65:48]: Topics, absolutely.
Adeel [65:50]: Thank you again, all of you. Super enlightening and emotional episode that I know is going to resonate with a lot of families dealing with misophonia.