Greatest Hits - Fantasyland: When Imaginations Get Carried Away

This summer, we're revisiting some of Hina and Marla's greatest hits from the first 10 seasons of The LowDOWN. On Season 6, Episode 11 of The LowDOWN: A Down Syndrome Podcast, Dr. Susan Fawcett and Adrienne Dall'Antonia give us the lowdown on what to do when your child’s imagination gets carried away.

Transcript

Today on The Lowdown, a podcast, Doctor Susan Fawcett and Adrienne Dall Antonia give us the lowdown on what to do when your child's imagination gets carried away. Over to you. Hey, Marla. Thanks, Danielle. Hello and welcome to The Lowdown. I'm your host, Marla Folden and SLP here at the DSRF. And I'm joined by my co-host, Hina Mahmoud, who's an OT at the DSRF as well. On today's episode, we're discussing fantasy, imagination, and the kind of areas in between families might feel really familiar with this area. We're talking about self-talk and movies and pretending and more. Um, we will be joined today by a family who has very extensive experience in this area, as well as Doctor Susan Fawcett to guide our conversation. We've wanted to make this episode for a very long time, since it comes up so frequently in the later school years and beyond. Yeah. So let's kind of introduce you to our guests today. So Doctor Susan Fawcett, who's appeared on our podcast a few times before, is the director of therapy behavior and Family services at the Down Syndrome Resource Foundation. Um, as part of completing her doctoral degree with Doctor Joe Luskin in the Department of Educational and Counseling Psychology and Special Education. In twenty twenty, Doctor Fawcett completed a dissertation project evaluating a preventative parent training program for families of young children with down syndrome who exhibit mild to moderate problem behavior. During her schooling, Susan also completed a two year practicum with a clinical psychologist at the Vancouver CBT center, where she learned how to provide cognitive behavioral therapy techniques to adolescents and adults with developmental disabilities and mental health diagnoses such as depression and anxiety. And also joining us today is a wonderful parent. Her name is Adrienne Dall'antonia. She is a sibling of seven, a mother of three, and a wife of one. Her academic background is a business degree from Simon Fraser University and a science or dietetics degree from the University of British Columbia. She practised as a consulting registered dietitian for over twenty years with eating for energy. She switched positions in twenty twenty and is now a caretaker of her living eighty eight year old mother in law, Anna, and her twenty five year old daughter Alya. The other household members include her husband Roger, daughter Leanna, her boyfriend Lachlan and twenty year old son Noah, as well as two cats and one dog. Um. Alya had previously been diagnosed with down syndrome, um, attention deficit hyperactivity disorder and anxiety, and her latest challenges started just as they were starting to feel the effects of Covid nineteen. It is this most recent journey that she is here to talk to us about today. So welcome to The Lowdown podcast, Adrienne and Susan. Thank you. Thank you very much. Thanks for having us here. Yeah, we're looking forward to kind of delving into this topic. But before we get into it, in the grand tradition of The Lowdown podcast, we always like to ask our guests five questions. I was hoping you guys be game for that. Absolutely. Susan is Susan knows the drill. So that's great. So you're ready. Okay. Adrienne, why don't we start with you first? Um, what sport would you compete in if you were in the Olympics? So summer or winter? No skills required. Just whatever you want to be in. Yeah, that's a tricky one. Probably the luge. Yeah. For the thrills. Thrills, thrills. Fast. Great. What about you, Susan? Oh, um, I'd have to go with gymnastics because it's the only thing that I would have a remote possibility of being able to do. Okay. Fair enough. Yeah. And even then, it would be not good. Oh, I'm an expert loser. Okay, well, there we go. So. Well done. There we go. Um, okay. Question number two. Uh, what is your favorite breakfast food? Adrienne. Oh, I just went to yolks. Yeah. And had, like, an amazing bene, which is not my normal favorite, but it was so delicious that I'd have to say that just because that's the most recent thing in my my repertoire. I love a good eggs Benedict. What about you, Susie? I also love a good eggs Benedict. Um, but I think if I had to pick, like, a sweet one, I would also pick waffles. Oh, like really good waffles. Okay, not mediocre waffles. No. Mediocre waffles. Not waffles. Yeah. No. No! Leggo your eggo! No. No. Maybe a proper waffle. Gotcha. Okay. Um, okay. Question number three. Um, so as we're as we're moving back to a more of a normal seat in our lives, and hopefully Covid nineteen is slowly going away. Um, what is the first place that you would like to go on vacation if there was no restrictions? Nothing. I know the answer to this question because, uh, yesterday we dropped my son off, uh, at the airport, and he flew to Ireland to study abroad for eight months. So we are planning to go to meet him in Ireland and then hopefully go to Wales, maybe Scotland. So, uh, I'm my last name. Used to be Thomas. So I've got a Welsh background and I'm excited to do some riding and and, uh, visiting over there. That sounds lovely. Susan, what about you? That really does sound lovely, I think. Um, I though right now I'm kind of hooked on the idea of going to Spain and Italy. Um, and we're hoping to do that next year. So. Yeah. Yeah, great. There's a lot to look forward to now. Finally. I really am hoping. Yeah, it's hopefully it's taking a turn. Okay. Marlo's gonna handle the next couple for sure. Um, next question is, does your summer this year have a soundtrack that goes along with it perfectly? Is there a song that fits your summer? Um, yeah. We can start with you. Um, I have been listening to two bands recently, um, which are kind of new. One was, uh, I heard about from, uh, Lachlan Leanna's boyfriend. He's Australian, and he really likes a band called, uh, Lime Cordiale, and I love them. So that's number one, the second band that I just started listening to. I don't know if they're a band or just a guy, but, um. Orville Peck who? My brother. Yeah, my brother got me into him, and I think he's, uh. He's pretty unique. Yeah. Yeah. Yeah. He is very unique. Um, I have to go with the. What? Stuck in my head right now, which is everything we listen to in the Raise Me Up program last week. Um, so it was all, you know, pump up music. Um, so there was a lot of Lizzo, which I wasn't super sold on Lizzo. And then I, I, they were really getting me into her. So I, I feel like I'm kind of changing my my mind on her a little bit. Yeah. What do you mean it wasn't badonkadonk? Uh, well, I mean, there was that honky tonk badonkadonk. Honky tonk badonkadonk. That was one of the pump up songs, um, contributed by Aaliyah. Yeah. Um, but yes, it's. There were there were some. There were some good choices in there. Yeah, and they raised me a program that you're referring to. Um, do you want to just give our listeners a quick little thing about it, just so that they understand why the pump up song was? Yeah. So it's a mix of, um, Andrea Lee and I teach it together, and, uh, we get very excited every year to teach it because she kind of, as the comprehensive sexual health educator, contributes the relationship piece and how to have healthy relationships. And then me being more the behavior mental health person I talk a lot about, you know, in that program about self-esteem and self-confidence. Great. So pump up songs, pump up songs are necessary. Love it. Necessary. And there was a lot of good dance moves. Lots. And Alaia loved it. And she's very resistant to coming to programs right now. So good to hear she loved it. Yeah. That's fantastic. Let's let's talk about Miss Alia. Um, if you don't mind, can you tell us a little bit about her? Kind of set the stage for what we're going to be talking about today. Sure. So Alya is twenty five and, um, was quite well adjusted and had quite a routine prior to the onset of Covid. So she went to SFU, uh, studied there with the Steps Forward program and was enjoying a variety of different classes. She was, um, attending classes like all the other kids and, um, enjoying university life. And, uh, she had a part time job, so she was working one day a week, and that was going really well. Uh, that was at a coffee roastery. And lovely, lovely people. It's Morgiana. If I can give them a plug, they certainly deserve it. Um, so everything was going pretty pretty well. Not not too many bumps in the road. She does have ADHD, so she had some. She was on medication for that. Um, and then Covid hit and things changed. Uh, changed of course, for everyone. And our house became, I think, just, um, there was too much fear. So much fear. Uh, we had the the news on all the time. We'd be getting, um, Twitter feeds and and just too much information and too much negativity. And everybody was scared to to go out. And even with masks, it was scary. The vaccines weren't available yet. It was just, um, very troubling. And then SFU went online. Aliya was not interested in zoom. She's not a fan of zoom, so that didn't work out so well for her. She basically dropped out of that. Um. Steps forward. The people there were wonderful and kept trying to keep her engaged. But even then, um, she was becoming more and more, um, isolating of herself and her actions. Um, my mom set up a weekly meeting of writing. Because Alya used to love writing. She'd write songs, she'd write stories, she's write, writes. Um, just ideas and lists. She was very much into art, so she would always do that. Uh, she wasn't writing. She would do some kind of art painting, drawing, tracing, um, anything, uh, painting rocks, whatever. For her? Um, yeah. Really creative. Uh, loved music. Loved watching various TV shows with myself and her father. Um, And then she just became more and more, uh, isolated. And she would choose to spend time in her room. More and more time in her room. And we we it happened so gradually. We didn't really realize what was happening until I kind of knew that something was off. And then her employer actually called me and said, Ali is doing a lot of daydreaming. She's not engaged in what she's supposed to do. We love having her here, and we'll continue to have her here. But she's not, um, doing the functions that she's supposed to do or she's taking a really, really long time doing it. So that is was, you know, a big, um, reality check. And so I took her to the doctor, and at this point, she was still going to I was able to get her to appointments because that stopped shortly after. So the doctor, um, you know, said I had done some, uh, some Google. Google doctor. Doctor. Google and, um, had had found the term maladaptive daydreaming because that's what she was doing. She was just daydreaming in her room for hours and hours and hours. Um, and the doctor said, well, this is just the just the family doctor. And she said, it sounds like it's actually really adaptive and that she's, uh, able to get away from these negative thoughts and experiences by by daydreaming and immersing herself in a, in a fantasy world. And I thought, yes, but the amount that she's doing it and at what cost to her usual experience and and social life. Um, so I wasn't really happy with that answer. And she did. My doctor or Ali as doctor did agree to talk to the people at the Burnaby Developmental Disabilities Mental Health Services. Um, they have psychiatrists and psychiatric nurses there. So my doctor said she would reach out and ask some questions. And she did put her on, um, an anti-anxiety medication, an SSRI, which didn't work. And we realized quite quickly that it wasn't helping. So we we stopped that. And then things got progressively worse. And she wasn't sleeping. She would daydream, uh, into the wee hours. At one point, my husband, um, went into her room and and said, Alya, you're awake. It's it's six o'clock. And Ali said, oh, good, it's dinner time. And he said, no, it's six o'clock in the morning. And she'd been daydreaming all night, so just no sense of time. She would have baths that would last three to five hours. We couldn't get her out, like, just could not. Um, and she would get very angry when we wanted to get out of her room. She would prefer to eat in her room, although we insisted that most of the time that she come out and and eat. Um, and she everything that she used to enjoy doing, she she stopped walking. She used to walk every single day. She stopped walking. She stopped doing any art or anything creative. She stopped writing. She stopped watching shows. She stopped going on her phone. There was nothing but her fantasy world. And, um, Can I ask you a few more questions about it, just so that it's clear for the people that are listening? Um, I'm wondering things around, like did she remember to eat if it was put in front of her? Or did you have to sit with her and remind her that she had to eat? Like, if she got started on an activity, could she continue it or would she kind of drift back into. She would be resistant to basically any activity except for eating, and she would eat really, really quickly just to get it over with. Mhm. Um, and if, if we suggested doing anything she would basically refuse. So she wouldn't go to the dentist, she wouldn't even go and visit my mom, which she usually loves to do. So we'd have to cancel plans very last minute because she's, she'd say she's doing it and then would not. Nothing could compete with her. Daydream was just too enticing to it. Would just lure her into this world. And she would also exhibit things like, um. Repetitive movements. And she would touch her lips over and over with her hand. And she had some vocalizations that she would say over and over again. Um, and I guess the the next step was, um, we finally got to see, uh, the psychiatrist. And that was only after the psychiatric nurse with the Burnaby Developmental Disabilities Mental Health Team came over. And they were wonderful. They came over and did did visits at home. And, uh, she had seen Ali a couple of times and realized after four or five visits that it was getting worse. It was just getting worse. And Ali would pace around and she'd just pace and talk and not be able to answer questions and really be in her own world. And it was very, very hard to draw her out of that world. There was no laughter. Um, there was. Sometimes she would cry because of, um, what she was going through in her world. Um, yeah, I'd say no laughter. But sometimes there was fun things that would happen in that world that she would, but it was not a real laugh. Um, and then and then we at one point we said, um, so I'm going back a little bit because this was right before her appointment with the psychiatrist. So right before three days before the appointment that we knew we had, she was exhibiting such, um, alarming behavior that Roger, her dad, and I said, we can't. We can't watch this. We have to get her to the hospital. This is this is too much. Just who knows where this is going to lead. So, um, we asked her if she would go with us to the hospital, and she said yes. And then she went to her room and refused to move. So we called, um, we called nine one one because we told her we would do that. And, um, so the RCMP actually came and declared her, um, well, they arrested her. They had to arrest her and declare her. They declare her unsafe for herself and others. So, uh, that was such a huge ordeal. Oh my goodness. At that point, she was eighty eight pounds. And she was she was being restrained by these huge. Yeah people. And she's so strong, so strong. She did not want to go and just very unhappy with the situation. I would tell you the words that she used, but this is probably a family podcast, so I won't tell you. But she was not happy. So anyways, the the result of that is she was admitted to, um, the mental health facility for nine days. And so our first appointment with the psychiatrist was without Alya because she was in the hospital. Um, so we explained the situation and we showed some, some videos. Um, and I'm realizing that this is a very long story, so I, I think this is really good. I apologize, but then so after that she got diagnosed with about, um, four or five different things. So she was let's see, she was psychotic. She had bipolar disorder. She was, um. What else did she have? She had anxiety. Depression. She had depression. She had, um, OCD. She. I mean, there was just everything flying around and different. It seemed like different psychiatrists in the hospital and the one that we, we saw at, um. Mhm. They seem to have a different diagnosis. So it was really confusing. And we're really like we don't really care what her diagnosis is. We just want to get her back. Yeah. We just want to. And I think that all the things that are happening, it could be it could be any of those things because all those symptoms are so overlapping. So every psychiatrist is probably seeing OCD, but then another person is seeing it as anxiety. So they're just putting all these labels on you, which could not have been easy to hear, that it could be a multitude of things. And then and then, yeah, at some point you just kind of say, okay, you can diagnose her with whatever works for you, but let's figure out how to get it. Let's have a plan of how to how to get her back. So it was during this time that I was really revisiting the, um, maladaptive daydreaming disorder. And I did reach out to the the doctor. His name is I. Excuse me if I don't say it right, but it's Doctor Ellie or Eli summer, it's Ellie. Ellie? Yeah. And he's. He's a doctor in, um, professor of clinical psychology. And he resides in Israel. And he coined the term maladaptive daydreaming. And I do have a definition. If it's okay if I read it. Yeah. Please do. Yeah. Um, so maladaptive daydreaming disorder is defined as, um, compulsively, addictively engaging in extensive fantasy activity that replaces human interaction and or interferes with academic, interpersonal, or vocational functioning. And to me, that just hit the nail on the head. That's exactly what she was going through. Um, Roger was saying, oh, Adrian, watch your your your, um, doctor Google diagnosis. And, you know, these are professionals. And, um, but I knew that there was some, um, dissociation going on and that she was deliberately detaching from reality and, um, and her surroundings. So I, um, when we talked to the psychiatrist, he did say, yeah, after seeing her because he eventually did see her and, um, um, talking to her and trying to engage with her. He said, yeah, definitely. There is a level of dissociation. He was really reluctant to, um, say whether it was a behavioural issue or a psychosis. Um, so we basically treated both. Yeah. Um, and I to this day, I don't know, um, I think a combination of both is working. Um, so she went on some anti-psychotic medication that was, um, she had in the hospital. She started in the hospital, which caused her to gain probably close to thirty pounds. So, um, and she's she's stayed that weight. Uh, we have changed the medications. So it's not risperidone. It's, er, If Brazil, which is Abilify, um, one of the medications that's discussed when you look at the information on maladaptive daydreaming disorder is, um, SSRIs and I think flu or something like that is one of the most successful. But with Alia, they said she doesn't have a good history with SSRIs. Yeah. Um, which is an anti-anxiety medication. So, uh, they said try, you know, keep on with the, um, so she was taking Ativan to get her sleep schedule better and the Abilify for the antipsychotic. And then a huge, huge component at the same time was, um, behavioral therapy. So Susan would come over, um, once a week. Was it once a week? Yeah. Come to the house, which was absolutely amazing because we could not get Ali out of the house, um, For a very long time, and she would come once a week and first work with myself and Alya, and then it became mostly just Alya. Um, uh, and at that time we also had some art therapy, which there was a art therapist who came to our house just to have her have something to do, and that was scheduled. And then gradually, very gradually, we were able to introduce more things. And we, we, we learned, um, triggers some music for a long time was a trigger. So she loves music. And, uh, first of all, she wouldn't even listen to music. And then when she started listening to it, it would she would like it for the first bit and maybe sing a little bit along with the music, and then it would trigger her into her fantasy world. So she was gone. And then, um. So I was I don't know if I should, if that's a good thing or a bad thing, because music to me is usually a great thing. But if it's causing you to lose yourself in your fantasy world, then, um, that's not great. And I'm I'm just going to interrupt myself here just to talk a bit about her fantasy world, because it's kind of interesting. Her, her world that she's chosen or built for herself was is based on The Vampire Diaries. So this was a show that she used to love watching, and she would watch The Vampire Diaries and then the spin off called The Originals. Yeah, the originals. And she was particularly fond of one of the characters called Elijah. So she didn't like the way that the story, um, the plot ended on TV, so she decided to make herself a character in a version of The Vampire Diaries that involved herself. Um, but she was a character called Rachel and also Nicole, which is confusing, but they're doppelgangers, which is more confusing. But anyways, that's the way she had it. And Elijah, um, was her. I'm not quite sure if he was her brother or her lover, but maybe sometimes at different times. One of each? I don't know. Um, so she's got a huge, uh, incredibly complex plot going on in her head. So I think at the beginning it was like, don't talk to me. I've got to keep this plot straight in my head. So she would go over and over and over and and she wouldn't usually talk to me about it. I was able to get little bits and pieces of it. Um, we were able to, like her cousin came over one time and she said, what does Rachel look like? And she described Rachel and her cousin, who was eleven, drew her. And Allie's like, yep, you got it right on, like dark curly hair. And and it wasn't didn't look like Alia. So that was kind of interesting. Um, and then as we are starting to come out of it, we are now at the point after many, many sessions with Susan and, um, Doctor Fossett can tell you more about her experiences with Alia because it was, you know, we see her every day. So it's hard for us to see the change along the way. And when we reflect back, we realize how far she's come. But now she's able to listen to music and sing along. Roger was saying after he dropped her off, uh, here at the uh, Down Syndrome Resource Research Foundation to see Susan. Um, on the ride home, they were singing songs and she was actually singing along to every word anyone would, just like anyone would. So, um, I was just just wanting to reflect a little bit on the complexity of the fantasy that she went into and the story that she created. Like, it sounds exhausting. Like, what was she like in terms of her energy level and her fatigue? Because it's a lot for your brain to constantly be keeping up with this, right? That's a really good point because I've never really thought of it like that. But she was exhausted all the time. Like she it was really tiring. She had no energy for like walking at the beginning for walking or any kind of activity at all. Um, we said one of the things that she was said she would commit to was tap dancing. So we tried doing that, and she did. She I thought, okay, great, I can leave her for an hour and, um, she can do some tap dancing and that'll be good for her. Well, she decided that mom had to be there with her. So mom and mom's friend Kim learned how to tap dance with Alya. So that was. That was actually really fun. It was funny. Um, yeah. And yeah. So now she's into, um, the music. She's. We'll watch a show. Um, my friend Kim has been really great with Alya, and she said, let's just go to a movie, let's go. And Ali loves movies, so. And that was something she used to love to do. So, um, the three of us go and we go in Brentwood, where it's got beautiful heated seats, and you can order margaritas and popcorn and have a really good time there. So, uh, we've done that a couple of times, and that's been really positive. And yeah, there's some funny stories there which I won't get into, but I'll just. Well, I'll tell you one story. She decided that Dune was really boring, so she left halfway through Dune or yeah, she maybe made it three quarters of the way, and she went into the bar at the, um, movie theater and ordered herself a margarita. Great. Yeah. No money. Oh, she just ordered. And so I came to find her, and I said, Allie, this is not an all inclusive. And she's just like, I'm using my down syndrome card, which she says quite often. So she uses this dance. I'm like, I think I actually have to get a card made. That is the down syndrome card. So it ended up she got syndrome privilege. Yeah, yeah. Love it. She got the the waitress was just so lovely. So she got her, um, margaritas for free, which was. And like, alcohol and everything. I'm like, seriously? Anyway, so. So she's, um, her character is coming back because as Susan will tell you, she's a bit of a naughty, naughty, sly one. And, um. Yeah. So she's able to work, she's got another job, so she's got three days a week. She's working at, um, something. So one day is the roastery Mogiana another plug. Um, and the other one is Vancouver, uh, props and costumes, which they've been really wonderful. So she got on with a employment consultant through CIBC and through after some work with Tyler. They're they she's got that position and she can walk from her house to the job. And it's a it's a really good fit. So um, she's laughing more. She's um dancing more. She's watching shows. And we're, we're trying to work on scheduling her times where she's daydreaming because she still wants to daydream. And we'll talk about. We'll talk about. Like I can interrupt her when she's daydreaming and making it more adaptive. Yeah, yeah. And, uh, she's able to come out of her daydream. And if she starts rocking or doing any of those kinds of repetitive behaviors, we'll we'll say, Alya, what are you doing? She's like, oh, sorry, sorry, sorry. And she'll realize what she's doing. And we went to the peony and she had a really, really good time. And I said, I wonder if you could put Elijah in, um, you know, a box or something. Just leave him at home. And, uh, she said, well, I'm not sure if I can do that, but I'll try. So there's. Yeah. Yeah. Um. Wow. So. And Susan can maybe tell you more about their their one conversation, which I thought was so wonderful was why like, how do you choose? Um. somebody to be friends with or have a relationship with. And that was really funny. Yeah, it was great. Um, the first thing that comes into my mind, and I think it's an important one. Susan, could you talk a little bit about how maladaptive daydreaming is? Not the same as Dsred. Because it sounds on some levels similar. And we have several episodes in this season about that. Yeah. So Alya maintains a lot of her self-care skills, like she was still able to eat if you put it there. She she kept her ability to do toileting and some of those things she did not for quite a while. She did not want to, um, wash. She didn't want to wash. Yeah. So it was either a five hour bath or. No, no bathing for like a week and a half or something. Yeah, I agree, it would be nice to kind of separate maladaptive daydreaming or distinguish with desert and then just maybe even just fantasy like general fantasies that a lot of our students might engage in that is not maladaptive. Sure. Yeah. So and I mean, the maladaptive daydreaming is, you know, as Adrian said, it was not one of the diagnoses for Alaya that was thrown out there. And one of the probably one of the main reasons for that is it's not really an official diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, which is what all psychiatrists will use. So I imagine it will be at some point, um, because there's now quite a bit of research to support that. It's a phenomenon, at least in the, in the population of typically developing adults. Mhm. Um, so it's a bit of a newer construct and not really deemed a disorder yet, but it really is just that component. Right. It's that the person is spending, you know, more than half their time, their waking hours in a in some kind of dream world. Um, and that that dream world, as Adrian said, is preferable to their real life. Right? So that that's kind of the main piece. And I mean, there's other things too, like the repetitive movements and things like that that go along with the maladaptive daydreaming. But the, um, the down syndrome, disintegrative disorder or down syndrome regression disorder, I never know what to call it these days because it's called both. Um, is a much more, um, it's got there's a lot more to it. So the regression piece in particular is essentially that the person loses a lot of skills that they had previously achieved. So in the and it's also very rare. Right. It's actually quite common for our, um, for people with down syndrome to engage in a lot of fantasy, whether it's at the level of the maladaptive daydreaming, maybe not so much all the time, but in the in the regression disorder, certainly there's a lot more happening, you know, um, or not happening really, because they've, you know, lost the ability to use the bathroom. Um, they're not able to, you know, do a lot or talk. And some of the, a lot of them lose communication skills. They lose cognitive skills. I think, you know, in Aliyah's case, like academic skills probably slipped for a while because she was, um, engaging more in the daydreaming. But it's not like they were gone. They were just put on the back burner. They were on they were on the back burner. They didn't compete with. Even though she's always enjoyed writing her whole life, she wasn't doing it because she was too engrossed in the fantasy world. So it's kind of like a I mean, that that that piece of it might be the daydreaming might be part of the regression disorder, but it's certainly not the major A component of it, that's for sure. Yeah. And our doctor, our family doctor did suggest that that indeed might be happening. And at one point, she said, Adrian, you might just have to come to the point where you accept that this is who Alya is. And the Alya that you knew before is not going to come back. Which made me very angry, very frustrated, very disappointed, and made me take action even more so. Um, if you're a family doctor, don't say that. Yeah, yeah, definitely don't jump to the worst case scenario right away. Holy smokes. Yeah yeah yeah. And I will I will say though, when I first, you know, having known Alya for a very long time because I've known her since she was a preschooler, you know, and I hadn't seen her in a few years, really, or interacted with her much in a few years. And when I first saw her last summer, She was not the Olya that I remembered, and I was really worried. You know, I was like, whoa, this is. And so that did pop into my mind. Except then it didn't, because I knew that she hadn't lost all these skills. Right. So, um, once, once I, you know, talked to Adrian a bit more about it, so, um. Yeah, but it was definitely a very different human being, for sure. Yeah. So I'm sure people that are listening to this are like, okay, I need to kind of have my radar on. What can I like? What should I look for so that I know that this is happening? Um, obviously Covid was, would you say, Adrian, that it was like probably a huge trigger for. I think it was the only trigger. It was a a major trigger. And then her her grandfather, her nonno passed away as well, which I'm sure did not help because then everybody's sad and down, and a house is not a happy place to be. Of course. Yeah. So then it's pretending through fantasies and imagination. Always problematic. Like, what should we look for? So life stressors are one thing. What are some of the other things that we should be looking for that kind of gets our radars up just to kind of make sure that we have all of our T's crossed and our I's dotted. Like, what would you recommend families look for? Yeah. Go ahead. I was just going to say just the decrease in, um, engaging in activities that are previously enjoyed. So it became very obvious quite quickly when she stopped walking, stopped writing, stopped watching TV, stopped using her phone, stopped doing any creative activity at all. Um, literally not wanting to talk to anybody on the phone, not wanting to talk to anybody in the house. She was wanting to be in her fantasy world as much of the time possible. So if there's any other major decreased loss of interest in things that are previously enjoyed, that would be definitely a trigger or, yeah, a reason to be concerned. And I think too, something you just said Hina about like is it always a problem. We should talk about that because it's not. I mean, all of us engage in some fantasy, right? Like, it is a very normal thing to do as a human being. You know, kids all pass through a stage where they are really doing a lot of pretend play. And in fact, we worry about kids here when they aren't doing that right. And kids who aren't engaging in pretend play are usually not. They've got, you know, maybe their cognitive skills are low, or maybe there's another diagnosis at play. Like autism. So, you know, we definitely want to see some pretend and some fantasy. And we need it for creative creativity and problem solving. And we need it to develop big ideas. And it's a really important thing. It's just when it gets too much. Right. Um, that that's when it's a problem. Um, but I think there are Adrian already mentioned, you know, life stressors, such as? Especially in Alice's case, you know, um, there was a death in the family, I think, to you also mentioned that Leanna and Noah, her siblings, they, their friends weren't around as much. Oh, absolutely. Our house, our house dynamic changed a lot because their, um, my two other kids are really, really social and they have a lot of friends coming around the house and the friends interact with Alia. Um, and there was none of that, at least for quite a while. Yeah. And that made a huge difference. And she's got one best friend who's who's typical, and she wouldn't communicate with her even on the phone. Yeah. And, uh, yeah. So it was. Yeah. So there there can definitely be those things for sure. There can, there can be kind of acute life stressors or things that are, um, happening currently. I think there's other triggers too, that, that cause kids to veer more into that fantasy world. Like, I think sometimes it's just boredom. Um, and certainly that was at play during the pandemic, right. Because all of these things were taken away. And now, you know, you're at home with just mom and dad. And, I mean, they can be somewhat entertaining, but they're not going to be able to entertain you for too long if you're a teenager. So, um, definitely the inability to connect meaningfully with other peers, right. In a school scenario, for example, that happens with a lot of our teens with down syndrome. Um, sometimes you add in the layer of social anxiety, right? Kids who are, um, quite anxious about being around, um, other people or where it's difficult for them. And just that general kind of escapism, you know, like if, if I kind of, if I'm a person with down syndrome and I go into a fantasy world, well, guess what? There I can look like whatever I want to look like. I don't have to have down syndrome. I can be capable of so much more there. Right? And, um, I think it was Dennis McGuire who said, um, he's a psychologist who actually is a social worker who, um, wrote the book on the mental wellness in adults with down syndrome, and, uh, and has worked with people with down syndrome for like thirty years. But he always says that, you know, the reason why they engage in so much fantasy. Or one of the reasons why is because they have such rich visual imagery compared to their other cognitive abilities. So it's easy for them to kind of get, you know, into that world and like really develop something very complex, like what Alia did. And I think too, that, you know, the cognitive level plays into it. Like somebody like Alia, who obviously had very strong cognitive and language skills, you know, prior to going veering too much into the fantasy world. Um, it sort of didn't help in a way, because she was able to develop such a complex scene in her mind. Right. Um, so, yeah, there's there's a lot of reasons why, um, why why some of the teens and adults might kind of veer into that realm. I think I agree with you about the boredom, and that's what we're dealing with now. She will. Um. I will ask her if she's in her room. Like she'll come back from work and she'll go into her room, lie flat on her bed, and she'll be dreaming, doing her fantasy thing. And she just she just lies there and I'll say, Alya, um, are you daydreaming right now? And she'd be like, maybe. And I'm like, do you want to do something else? Do you want are you bored? Yeah, I'm bored. And then I'll give her a list of of things to do. So it is, it's a lot of work and a lot of, um, time. I'm really, really lucky that I've basically retired and I'm a caregiver now. Um, uh, really, really fortunate that we're in, in that kind of situation where I can dedicate my time to her and my my mother in law. Um, because I'll have to be the one to, um, you know, do you want to play Uno? Do you want to play? We got a ping pong table because we thought you'd like a ping pong table. Do you want to go for a walk? Do you want to? And Susan's been great about, um, creating this long list of of things that might be interested in. And, I mean, some of them are hilarious, like fart under the covers, because right now she's going through this body, um, sound stage where she thinks burping and farting are, like, the most hysterical things in the world. So. But whatever it takes, and, yeah, whatever it takes is is fine. So boredom is a big factor. So we're trying to. And she's starting to realize that she can do things her herself. Yeah. But I'm a little bit sneaky. And I'll do things like I'll go on her phone and start a conversation with somebody all day. This morning I did one with, um, with Sadie, I, I said, hi, how are you doing? What what are you doing today? And then leave it to Alya Alia to to finish it. And she does. She doesn't. I don't think she knows what's. Ali doesn't know what's sneaky. But a very good idea. Yeah, yeah. And I'll do that with her. You know her? Clbc. Yeah. Helpers too. I'll start something because they don't really want the mom involved. But sometimes Alia doesn't go on her phone. And so. And today I added her on WhatsApp because her brother is in Ireland. So now we'll have a family communication there. And yeah, so she can decide whether she wants to engage or not. But um, and I think you bring up a very important point that for anybody, whether you have down syndrome or not, if you don't have things to do throughout your day, it's not good for anybody. Right? So, I mean, there's so much research out there that for a lot of people suffering from mental health challenges, if they don't have things to occupy time in their day, then the mental health stuff takes over. So if you have schizophrenia, then the symptoms get worse because you're always just focusing on that and not something else. So I'm glad that you mentioned that you're adding slowly, adding things to Alia's schedule so that she can. It's not like all of a sudden thrusting her into like, okay, we're going to do six different things, but it's slowly and I know Susan, like, can you talk a little bit about when you started working with Alia, like what was your approach to helping her kind of get back to where she is now? Like, was it a very slow progression? Did you just dive right in? Like, what did that look like? Well, it sort of had to be a slow thing because she was not very responsive when I first started going there. So, you know, both Adrian and I would sort of have to poke her sometimes and be like Alia, right. And she would sort of maybe like, look at me for a couple seconds and then you could see her going back into, into her dream world. Um, so it was really, I think the first thing was probably Uno, that was like, that was the only kind of thing that the magic of the magic of Uno. It is very magical. But one of the things that, um. That this. Ellie Sommer recommends for, uh, he actually has a really clear kind of. Treatment plan for people who are engaging in too much maladaptive daydreaming. But one of the things I really like that, he says, is that it's basically you have to. Find things that are incompatible with the daydreaming. So if I, for example, like you were saying earlier, Adrian, about the music, that can actually be a trigger. So it's. She can still listen to music and daydream at the same time. So you need to find things that she cannot do at the same time as daydreaming. So something like playing a game, being interactive, having a conversation, giggling about farts, right? Like anything that we can do that basically doesn't allow her to daydream at the same time will keep her more engaged. Um, so it has to be, like, cognitively challenging enough that you have to focus and it can't there can't be automaticity to it. So for Alia, because she's really good at drawing and art, right. That was something she would willingly do. But you could see that she was still a lot of the time when I would do that with her, she was still enmeshed in the, in the fantasy world. Yeah. Which which makes sense. Right. If anybody else you know who likes art, you kind of. You can let your mind wander when you're drawing and painting and even when walking. Right. You can kind of let your mind go listening to music. That's why people do those things. That's right. They're a bit meditative. Yeah. And that's another thing that, um, I've seen a few times. It's recommended for people who are a bit too, uh, that go down this route into fantasy world too much is to do some mindfulness activities. But the problem with mindfulness activities, especially for our guys, is it's. Yeah. So abstract. Right. Just focus on your breathing. Well, I mean, if I tell Alia to focus on her breathing, she's just going to be like, okay, I'm going to go visit Elijah now, right? Like, great. Susan's giving me five minutes to like, go visit my my handsome guy in my fantasy world. Perfect. We can close our eyes and I'm going to go there. So. But if we do mindfulness activities that are more structured with maybe a visual component, like something like, um, you know, using, uh, like a mental vacation type thing, right, where we have a photo of, like, a beach. She wanted like hot guys on the beach. So I found a picture of, you know, like a beach with hot guys on it. Maybe a margarita, maybe a margarita. Yeah. And we did talk about the margaritas, that is. And then we talk about, you know, what are all the good things about the beach, right? Like, what do you taste and what do you smell and what do you see? And that kind of thing can be good because it kind of keeps her with me more in a more real like in more the real world or like a five senses activity where you, you know, that can kind of I've noticed a couple of times that can draw out of it, like you seem to be slipping into that world. Now let's try, you know, let's look around the room and say three things we can see. Say three things we can hear. Say three things we can smell. Right. And that gets her back. That's a mindfulness activity. But it gets her back to being with me. Right? Yeah. So yeah, I can imagine right now that families who are listening to this and who have children or teens or young adults who do this some of the time. So we hear this a lot about families who have high schoolers, and it's like, oh, by the time afternoon comes around, they are checked out and they're reenacting something from some movie. So it's not taking their entire day, but they might be worried hearing something like this. So what what can people do to put the brakes on that or find some balance? to prevent this really catastrophic thing from happening. Yeah. So, I mean, I would say, and I'm sure Adrian has ideas too, because she's had really good, you know, ways of drawing Aliya, um, back. But I would say, you know, there's a couple of ways to do it. One is to make sure that the person. I'd like to think of it, I read once, I can't remember where, but I read once that we all need to have activities in which we can, um, have both pleasure and or mastery. So essentially, you need to have things that are fun for you in your life, and you need to have things that you're good at, right. And that you can actually that help build your self confidence. So making sure that kids are doing those kinds of things, um, ensuring that the teens and adults have meaningful friendships, right. Not just, um, you know, Aliya does have this one friend, which is really great. And you don't need to have lots of friends, but you need to have at least one really meaningful friendship where there's a, you know, a good amount of give and take at the same level with the other person. Um, and I know I feel like we say this all the time. I think I've said it on this podcast before, but the screen time. Right. So but let me be a bit more specific about limiting screen time. So not only do you want to limit the actual amount of time, but it's also in terms of the fantasy world stuff. It's about not watching the same thing over and over. So I get really concerned when I hear parents saying, oh, they only like to watch frozen, or they only like to watch, I don't know, whatever movie other movie is, you know, du jour, right? Encanto. I think it is Encanto right now. If, if a, if a teenager is watching Encanto, you know, three times in a row on a Saturday, that's that's a Problem, right? Um, if, if that, um, teenager is then able to kind of script from that movie or rehearse or say or line after line after line after line, um, that means they're watching it too much. Yeah. Right. That's that's definitely too much. Um, and then the other thing I think that's really important about screen time that, uh, affects the fantasy world. Um, issue is the, the type of thing that you're watching. So things that are violent, things that are scary and things that are overly dramatic should all be avoided for kids who tend to head down that path. Right. Because it just gets um, yeah. The reenactments then get really they do. They can bleed into real life. Right. We've seen that here at DCF many times. So, um, just keeping an eye on that. And I know it's much easier said than done, but it's it's really important. And it's tricky too, because our guys are routined and like they like the same thing. So it's like, oh, frozen over and over again because that's what I like. It's predictable. I know how it's going to turn out. I know every scene and and we've seen that. It's amazing how they can recount each scene of a movie. Um, even if I have clients where they like to listen to similar songs all the time. Right. So it's like that. It's you can I mean, they won't like it, but you can break them out of that. But it's just good to keep in mind to before you even introduce things like movies and, you know, things that are either, you know, like overly dramatic or whatever to just make sure ahead of time you're like, okay, we're going to do a nature documentary today, okay, we're going to do this today. So you're already providing them with variety so that they're not just stuck on that one thing. Right? So yeah, but I'm really into these days watching like silly cats on YouTube. I find that really entertaining. Ali enjoys that too. Yeah. Yeah, we've we've we've watched those videos together. They're very hilarious. Can I ask you a question? Going back earlier to when you were talking about providing like for with Ali, you were providing her with activities to do that were like, as we like to call it, like just the right cognitive challenge. Um, talk a little bit about the importance of interaction, like having somebody else there to interact with you so that you're hopefully less likely to retreat into your fantasy world. Because obviously, with the pandemic, all of your friendships are, you know, you're not seeing your friends anymore. You're not seeing your siblings friends anymore. So that piece of having friendships and having that social connection and how that plays into it. Yeah, I mean, that's that's crucial, right? It's sort of it needs to happen for sure. And I think actually one thing that people can do is even if a even if a child or a teen or an adult is to, you know, getting too much into their fantasy world, it can help you connect with them if you actually, um. Go in with them. Right. So, like, you know, Ali and I and other kids I've worked with too, and adults, we, we talk about what happens in that world. Right. And she wasn't into that for a long time. She was she didn't really want to share. No, she did not want to share. But, um, what worked for her is I got her writing about it, and then she. And then we would kind of talk about it a little bit because she really, you know, likes the writing kinds of tasks. Um, so if you're having trouble getting your, um, teen or adult to engage with you, that might be one way to do it, right? Um, uh, but it is really important that they have meaningful Relationships. I mean, just think about how all of us felt during the early stages of the pandemic when when social opportunities were really limited. You know, it doesn't make you feel good. Um, so, yeah, it's it's crucial. I try to set up those opportunities for Alya as much as I can, because obviously spending time with me gets a little bit boring. And she knows you're pretty fun. She needs more stimulation. I want to hang out with her mother. Um, so, for example. And she doesn't like to, um, initiate. So I would ask, um, my son Noah or Lachlan or Leanna or whoever it is there to ask her to do something. So if I said, Alya, do you want to play ping pong? She'd be like, no. And I'm like, well, Lachlan is asking you to play. Oh, really? And he's like a cute Australian guy. And then it's like, okay, I'll play with Lachlan. And same with Uno. She'll play Uno if her nonna, her grandmother asked her to play, she'll she'll do that. Or if her, her brother's been playing with her quite a bit playing Uno. And as a family she, she's very good at it. Mostly because she cheats. But, um, she's she's. Yeah, she definitely gets some positive feedback because, um, she's very successful. So, um, maybe she's mastered Uno. So that's. Yeah, that's her one thing that she's, she's mastered. Um, and. Yeah. Art, um, this this screen time, um, is an interesting one because when I reflect back on what she was doing prior to Covid, she was very interested in the in The Vampire Diaries and the origins. And I'm thinking violent, dramatic. And what was the other one? Scary. Scary? Yeah. Check check check. And she would watch it over and over. Yeah, but not with me. With her dad. She would watch the voice. And she loved that. So I think that's a pretty safe one. Yeah, we have that on our list of approved activities. Approved activities. And with me, she would watch heartland and, um, a funny story about heartland. Not funny, but ironic, I guess. I don't know if that's the right word, but, uh, we were I had finally convinced her to watch heartland, which is one of her favorite shows, its Canadian show about horses and handsome cowboys, and it just lovely grandfathers and all this kind of stuff. And I had finally got her to agree to watch at least part of an episode of heartland with me. And we sat down, we started watching it. And the first thing that happens on this particular episode is the guy. Her favorite character dies and is no longer on any episodes. And I did not check beforehand, so that was a major Adrian fail. Um, and we've since gone back and watched the rest of of the episodes, and I think she's forgiven me for for tie dying because I'm sure that was my fault. But, um. Yeah. So that's an interesting thing about, uh, screen time is that she hasn't been, um, wanting to engage in it, I think because right now it interferes with her ideas. Because she changed the story. Yeah. Yeah. Um, but when she goes to a movie that's entirely different because she's. So. Except for Dune, don't recommend Dune for people who have a bit too slow for us. Yeah, it's a beautiful movie, but it is. It is. But, um. Yeah. Didn't catch her attention. So, um, she's fully engaged in movies when she goes to see them. Because it's an adventure. You're going out, you're having popcorn, you're having a apparently multiple margaritas. And, um, she she's engaged in the show, so she's not dreaming at the same time. So it's one of those things that she can't do at the same time. It's so novel. Yeah, yeah, yeah, yeah. Um, I think part of the reason and we've talked about this in another episode, but part of the reason that our students and adults are so attracted to this kind of TV is because they're so good at reading emotions. Yeah, it's actually a huge area of strength. They're very sensitive overall to these close up shots of big emotions and feelings and violence and those kind of things. Yeah, yeah. And that's that's where it gets tangled. Yeah. And the issue is and this didn't just happen with Alia, but with other, um, teens and adults I've, uh, worked with with this similar, you know, going into Fantasyland issue. Um, is that when those when you see the violence and the scary and that will, that will filter into their, their fantasy. And so there were times for sure that Alice seemed scared of what was happening. I've definitely seen that. I've seen kids be very upset about what's happening. So crying because of something that's happened in their fantasy world. So you just, you know, you don't want to fuel that basically. Yeah, yeah. But it's also hard to find shows that are don't have those that are also like age appropriate. Right. We also spend a lot of time encouraging people to watch more mature things. Yeah, I guess it's nature documentaries forever. Yeah. Which are my favorite. So that's that or the voice. Yeah. The voice. Nature documentaries. And that's dancing with the stars. Sure. That these, these like reality shows that are like, yeah, not fantasy Heartlands. Okay. Heartlands. Okay. Except for that one episode, that one parent alert on that episode. Yeah. If I had been alerted to that fact, it might have been better because I could have prepared her. But it's great that she came back to it. Yeah, she did, because she's now getting better and able to. And yeah, we can enjoy the horses and the beautiful scenery and. Yeah. Yeah. The other things to kind of. Yeah. I was just going to say that it's nice when you're watching these things with your kids to also have conversations about it. Right. Like, oh, this isn't really real. This is just pretend. So just kind of starting that dialogue. That's right. Yeah. I'm really glad you brought that up because I think if you do and you said, you know, Allie won't let me watch it with her. And in fact, that's a lot of the times what happens. But if you can kind of force yourself in there, um, as a parent. So, you know, I have a couple of dudes who really, for some reason, like Days of Our Lives. Right? And if parents watch it with them and they talk about that, that's not really what happens that people don't slap each other like that? Families don't hit each other? Well, maybe some families do, but you know what I mean. That if you can kind of get it grounded back in reality. So that was fun to watch. But, you know, it's not that's not really what happens. Let's let's kind of talk about that a bit more. Let's, you know, families have to make it less fun is what they have to make it a little less fun. Which when I have recommended that to, um, parents, they the the kids get real mad about it because it's taken out the fun. Yeah, because it's now it's not. I can't go down that path anymore. Right. So, um, but it's really important to do it. Yeah, yeah. I watched, um, quite a few episodes of The Vampire Diaries and a bit of the Originals, just so I knew what she was talking about. So I can, especially at the beginning, so I could engage in conversation. I think those are wasted hours. Um, so I would say things to her that would make her really mad, which would be like, Elijah's not that cute. Oh, and that was just like, yeah, that's going too far. It's going well. And we had to talk about how old he is, right. And how that was one of the things like he's way too old for you. He's like he's the same age as her Auntie Meredith. Right. And when she. When I say that and she thinks of her Auntie Em, she calls her, she's like, ooh, ooh. And then Susan did this wonderful list, which I was alluding to before, about the relationships. What what what do you have to have to have a successful relationship. So it was, you know, is the person interested in similar things to you? Is the person available? Is the person married? Is the person, um, living in the same town? Is the person? Yeah. And then the last one, just like you said, it's the person actually Yeah. Yeah. And so abstract. Yeah. Yeah, we figured that. Oh, well, the, uh, the actor is real. Yeah. Yeah. And, uh. Yeah, I've told I've suggested writing because I want her to get writing again. Fan mail. Mhm. Because that's something that that people do write a fan letter and that's acknowledging him as a person. As a real person. Yeah. So I've tried that. She hasn't. I said I would write it for her. Um, I, I offered many times to write her story for her. Like she's changed the plot of the ending of The Vampire Diaries. So I have offered to write it for her. And she said, no, it's still private, so not successful there. But, um, yeah, she shares a bit more. Um, one of the things I wanted to mention is that there is very, very little information. Um, and maybe you found more than I did, but of maladaptive daydreaming disorder and down syndrome, or any other disability that goes with pretty much everything. Is that right? Yeah. Every mental health. And that one's not even as we said, you know, it's not even officially a diagnosis. Yeah. But it's but you know that that is true of almost all of them. I mean, there's, there's like little bits here and there about how they interact together, but it's it's pretty rare. Yeah. They did mention it very often coincides with ADHD. Yeah, OCD, sometimes autism, but mostly ADHD. And there's some kind of differential, um, tests that you can do to see if it's, um, which of the. Yeah, which it is. Yeah. Um, but having said that, I did find it very valuable to go on. There's a Facebook group for people with, um, maladaptive daydreaming disorder, and it's them talking to each other, And I found that really helpful. Um, because there was a lot about, oh, do you ever fantasize about, um, celebrities or, um, how much of your like, it's really I got a lot of insight. And these are, they're all typical. A lot of them have had, um, major incidents in their lives that they're trying to avoid. Um, yeah, but I did find that useful looking at that because there is so little in. Yeah. Well, it leads perfectly into my next question, which was as a, as a parent. And I'll come to Susan as a professional, but as a parent, if there's somebody listening out there being like, oh, sounds a lot like my kid, what would you recommend? Like their course of action be? So yes. So now that they're familiar with the term maladaptive daydreaming, read up on it. We'll put links to some of these things on our episode page. But from a parent's perspective, how would you guide another parent into navigating this? So yeah, Ellie Summer did has created a I think it's a scale. Um, so you can go through that to see if, you know, you tick the boxes of um, MD, they call it, um, and then I think sometimes, like with Alia, she did need, I believe, the anti-psychotic to just kind of get her out of it. And then also the, um, whatever would help her to sleep. Sleep was really important. If she chose daydreaming over sleep. She was so messed up. So messed up, and, um, so just getting her on a sleep schedule. We actually did a sleep test. Like the apnea test. She was fine. Um, so getting her on a regular sleep schedule, which involved, um, Lorazepam in a larger to less dosage. Now she's not even on it at all. And her sleep schedule is really good. Mhm. Um, so sometimes some of these things are just temporary measures. And then um, so that's a psychiatrist getting involved. Wouldn't expect too much from your family doctor. Um, you really I, I know I've said I always say this, but you have to advocate and you know your kid best, and you kind of have that instinct of what what do they like and what will what will get them out of there. It's not a funk because they think it's awesome. Yeah. The, the it's part of what makes them so vivid imagery and what they you can just sense there that they're so immersed in it. And the pull and the compulsion is so extreme that it must be awesome to be in that daydream. so to try to compete with that is really challenging. But but it's not impossible. And and um, so just bit by bit um, medication usually helps. And then introducing things slowly. So it's not overwhelming. So they're not bored and they're doing things that, um, they can't daydream at the same time. Um, try playing ping pong and daydreaming at the same time. It's very different. And daydreaming and fantasy is totally different than, um, mind wandering and imagination. It's like a full on immersion into something impossible or at least improbable. So it's really different than just your thoughts are wandering to, you know, certain things. That's we all do that. So, um, and Susan, what are from your perspective? Yeah, sure. I mean, I think, I mean, I just want to give Adrian some credit too, because like that was it was dark times in your house for a while. And I think what really helped you guys is you really and this is hard to do, but you really maintained a positive attitude. You never really, you know, you didn't sort of you kept trying, right? You had to put a lot of effort in, as you say, to get Alaia to pull her out. But you kept trying things like basically anything you could write, and I just wanted. Yeah, I just wanted to give you some, some credit for that because I'm sure that can't have been easy to do. Um, and I think just in terms of, uh, I had a couple thoughts, um, about the definitely finding a psychiatrist for sure, just to, you know, as we've talked about, finding an actual diagnosis is not necessarily the route you need to go down. But sometimes these medications can be helpful. It helps you get over that initial hurdle so that some of the behavioral or counseling stuff works a bit better. Right. So it doesn't mean the person has to be on medication forever and ever. You can eventually decrease them. Um, but that I think that can be important in if, if it's quite a severe issue. Um, so a psychiatrist for sure. And then if you can find a counselor or psychologist who has some experience with people with developmental disabilities and or down syndrome. Right. That would be that would be great. Um, I know there are not a lot of us out there, but, um, there there are some of us for sure. Um, and then I did want to just talk about just because it popped into my head about the, you know, that there are I think there's there's an important point with the maladaptive daydreaming. That is when you were saying earlier, Adrian, that there's not a lot of research on how the two interact together. And I think from what I can tell so far, there are a couple of key differences for sure. Um, one is that they will say in that literature that people who, uh, are engaged, typically developing people who are engaging in the maladaptive daydreaming, can easily distinguish fantasy from reality. And I don't think that's always the case in I think in Alice's case, it mostly was, um, from what I saw, she could say, like she would say to you, I know it's pretend, mom. She said that from day one. Yeah. So she she could distinguish. But I think sometimes kids can't. Some of the other, um, teens and adults I've worked with, it's harder to tease those two apart. Right. And she said that. But it could have been because she knew that's what you wanted to hear. Yeah. Yeah. So that, I mean, that could have been part of it, too. And then the other thing is to keep in mind the motivation component. So as you know, Adrian said. It's such a pull, it's such a draw. If you are a typically developing person, you can rationalize around that. You can. You're distressed by it because you're like, wow, you know, this is really fun being this fantasy world, but I know I need to work. I know I need to take care of my kids. I know that I need to be around my family. Right. And so you can make yourself get out of it. That does not exist necessarily for people with down syndrome, right? They're like, nope, it's more fun there. I'm having a really good time. You know, the real world is okay, I guess, but why would I want to be there when I can be over here? And so the motivation component I think is really a huge a huge issue, right. It's not it's not just a matter of, you know, rationalizing that I can I need to be spending more time in the real world because that's what I'm supposed to do, right? Yeah. A lot of the literature talks about the if, um, the typical um, person with, uh. Maladaptive daydreaming daydreaming disorder. They, um, will feel guilt and shame after they've engaged in that behavior because it might have gone on too long. It might have been excessive. Whatever. They feel guilt and shame because they they think that they should be engaging in other behaviors, whereas Alya does not have any of that. She just she just thinks that, you know, this was this was a better option at this time. Um, you know, that was a good decision on from my point of view. So it's very it's very I agree, it's very different from there. The, the other thing that um, when you when you talked about, um, our approach, our family's approach, the positive approach, um, I mean, there were many, many tears shed. Not try not in front of Alya. But because it was so heartbreaking and I just wanted my daughter back. But one of the keys that really helped was just not judging it. And it's not only being positive, but not like she was experiencing it for whatever reason, it was what she was going through. And it was really frustrating for a lot of people around her because there was irritating noises, there was irritating behaviors, there was repetitive things. There was, um, non-communication. And it was really, really difficult to be around. So when we did have family gatherings, some of the some of the cousins were were just like very, um, I don't know, triggered is the right word, but just like, why is she doing that over and over again? And just like, this is where Ali is right now. She's. And trying to explain it was really tough, but, um, not judging her behaviors, but just trying to, um, understand and and move forward with and realize that there's going to be some, some days, like Roger said today, we've been on a five day roll of really positive behavior. Uh, we went to the peony, we went to Theatre Under the Stars. And, um, today was a really good day. And she saw her friend Talia last night and had two margaritas. Yeah, she told me she was hungover this morning. There's a theme. You brought it up. There's. There's a theme. Yeah. She she texted her like she doesn't text and communicate very much, but she texted both me and Roger separately saying I'm drunk. Like, what are you going to do with that? I'm like, good for you. Just. Yeah. And her friend is totally great. And just, you know. Yeah, they had their meal and she came home like any other twenty some year old. Yeah. Yeah. Would it be any different? Yeah. Yeah. Yeah. And I think it's also really important to kind of let our listeners know that it doesn't mean that any kind of, I mean, pandemic was just so different, but it doesn't necessarily mean that if you have a death in the family that this will happen. It's just something to be aware of. Yeah. If or especially we talked about this in another episode, how a lot of our guys have trouble when the big post-high school transition happens, right? So you're kind of preparing ahead of time and not necessarily thinking worst case scenario, but just being like, oh, I'm just going to keep an eye on things because as soon as high school is finished, support systems are going to be different or gone, right? All those extracurricular activities are going to be gone. So these type of things might be more likely to happen. So yeah, it's just not to scare families, but to prepare families that just have this as an additional tool so you'll know what to. Yeah, that's a really good point. If I had been if I had realized that this was going to become an issue, I would have accessed way more help from Clbc much earlier. And the psychiatrist was there's a huge waiting list. Yeah. And honestly, it wasn't until the psychiatric nurse, um, came to our house and witnessed it that we got in the next week. Yeah. Um, because she, you know, you say it over the phone, it doesn't sound so bad, but when you see it. Yeah. Yeah, it's it's especially if you've seen her. You've seen her before. And they had come up, you know, four or five times and seen her go down, down, down, down, down and get further, further immersed into it. And it was at that point that I know that's why we got the appointment. It was so. Yeah. you were on the ready? Yeah. Ready? So maybe even things around, like if you if this is happening some of the time, letting your family doctor know. Not that the family doctor is going to be the end of the line of this inquiry, but just so that it can happen at an expedited process if it needs to later. Yeah, keep a record of it too. Right. I think we've yeah, we keep a record of baseline video of somebody doing really well. Yeah. Always good to keep around. Um, and then for many reasons, many such. That's such a valid tool to have. I wish I had more. I think we've had videos of Alyssa, but if I had, um, focused on that before so they could see the before and after, because people who don't know your child. Right. Has no idea how bad is functioning exactly before. Yeah. And they make assumptions. Oh, this is just down syndrome. Oh, yeah. Yep. Yeah. Oh, yeah. Yes they do. And to what you were saying, Hannah around even transitioning into high school, which has a different structure than elementary school. And for a lot of our students, it involves too much downtime in the school day. So they do a lot of fantasy during the day. But thinking less about finding the most challenging thing for your student, and more about the most engaging and successful thing for your high school student and post-high school as well. So that time is full and meaningful. Meaningful, and people feel good about what they're doing. So the answer to everything. Uno. Well, I didn't know Ali before, so I don't know anything about her, but I can imagine many other students who had too much like hang time. And they were just they were struggling with it. And we've seen this so many times in our with our families and our caseloads where we talk to the teachers and the E's and it's like, yeah, we're just hanging around doing this or, you know, yeah, they're in high school or access class. They're just doing this and it's just a recipe for trouble. So it's like those meaningful and forgive the term because I'm at OT. But those meaningful occupations are really important. They need to engage in things that are meaningful for them every day, so that you know that they find fun and love in what they're doing. So yeah, I'm so happy you brought that up. It's a really great point. Um, we want to thank you both so much for sharing for you. Definitely with you, Adrian, for sharing your story. I know it was. It must have been a very tough time. We can't imagine. But we're so happy to see Alya kind of come back to where she was. I remember her when she was younger too, so it's just so great to see her doing the talent show in that lovely dance that she did. You mean the twerking? The twerking she learned from her mother? Yeah, apparently she learned another Tuesday night. Roger says. Just had to throw that in there. I had a chance to take, um, Alia's photo for for, uh, for a raise me up project, and it was just so much fun interacting with her. She was just so confident. So, so great to see. But, um, but thank you so much for sharing your story. I know this is going to be very helpful for professionals listening, for families listening. Um, and yeah, anyone else? And thank you, Susan, for sharing your expertise as well. Um, we'll put links to all those things to Doctor Ellie, Summer and everyone else's doctor McGuire. All that on our episode page. But yeah, if anybody has any questions for me, any parents want to. Fantastic. Absolutely. They can. They can email me. Great. Yeah. Me too. Yeah. Okay, great. We'll put those on there too. Yeah. And thanks. Thanks for having me. It. Thank you so much. Kind of makes it seem a little bit more legitimate because it's like. Like. Absolutely. Susan said it's not on the DSM, so I think it will be there's more research happening, and I think it will be I think the pandemic, it's caused so many challenges for our guys. But in a way it's like, okay, now at least people are paying attention to it. So it's like, okay, now we just got to keep pushing forward. Right. Making sure we're all aware of it. So but yeah, but thank you so much. You're very welcome.