Living with Williams Syndrome, Anxiety, and OCD

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- There, I just turned it on. What is it like to see yourself on camera? - It feels really exciting. - Why? - Because I get to see who I am, I get to see the person that I am now, and I'm really glad that I'm in this world and that I make others happy. And that makes me happy when others are happy, because I'm happy. - I'm really happy. - Yeah, I can see that. - What's the best thing about happiness. - That it's always contagious. - [Interviewer] What are you thinking right now? - I'm thinking that this is gonna be the best interview I've ever done ever. - [Interviewer] How do you know? - Because many people will see it and they all knew who I am as a person. - What is it like to be in a special education class? - It's difficult because when you're in a special ed class, you don't feel like you're with other people. You're only with people that have disabilities in that class. - Do you sometimes feel like you're isolated? - Very. Both physically and emotion isolated. And there are situations where my loneliness makes me feel more anxious. Because I feel like others are forgetting that I'm there too. I just want a true friendship. And I need to be loved. And I need to be able to be happy with who I am. I think that's what causes my anxiety too. The worry that the people I'm hanging out around with right now are not being really trustworthy. Because there was one time when I asked some of my friends if they wanted to hang out and they told me they were busy, but then I looked on social media and I noticed that they were hanging out together without me. - I'm sorry that you experienced that, but you brought up an interesting topic. Growing up in the time of social media. - Yeah. - What's that like? - I noticed that a lot of my friends tend to comment on their friends, friends posts, but I don't get a lot of comments on my posts. - [Interviewer] How do you feel as you sit beside your mom? - I feel happy. I feel strong. I feel loved and I feel appreciated by her. Because she literally made me. - I did. - She made me. And I could never ask for a better creator than my own mom. - [Interviewer] Is Sofia an effective communicator of her emotions? - (Sofia's mother laughing) I think so. Can you tell this is a house of female teenagers? (Sofia and her mother laughing) The emotions are. - I think the best thing about having a sister is the way that they advocate for your needs too. Because like, if your sister's getting bullied, then if I'm getting bullied, then my sister could be like, "Hey, you're bullying my sister and that's not right. She is my sister and I accept her as she is." - [Interviewer] What are your disabilities? - ADHD, Williams syndrome, social anxiety, depression sometimes. - [Interviewer] How does Williams syndrome impact you? - It's very hard for me to make friends, because I'm different and my disability makes me different. - Sofia is the only person in our entire school system with Williams syndrome. She is, you know, new. - All I want is for people to get to know me as a person, and for others to be like, "Yeah, I know that girl." But I know that girl because she's my friend and I accept her. If we accept each other as we are, which I think we already are because you and I are vibing right now. - I'm totally accepting you. - Yeah, and I'm totally accepting you back. We accept each other because that's how we should be. We should learn to learn from other people's stories, from other people's perspectives on life, and what we can do to make it better for them. And that's what you're doing. And I praise you for that. - Thank you so much. Your words mean so much to me. You're such a genuine person and I'm really happy I get to spend time with you today. - Me too. - If you knew what she has had to feel, you would hate yourself for saying mean things about her. You would hate yourself so much. - Because when people bully other people, that's when the victim's mind get set on those hurtful, thoughtful feelings. - [Interviewer] But when you're with your sister, do you remember there's people who will always love you? - I always remember that because she's shown me that. And I know what love is because you taught me how to love. - Oh God. (Sofia laughing) - I'm serious, you have. - This is like a regular thing for us, by the way. Remember when I said emotional? I was not lying. - [Interviewer] Do you have conversations like this every day? - Not every night, but you know, anytime something big happens, it's something along the lines of this. - I can tell you love laughing. - I do. - Tell me about your love of laughing. - I think like sometimes a situation happens and like, I think laughter is such an important thing because it reduces anxiety or reduces stress. - Do you like random stuff? Like random, goofy things happening? - Yeah. - Like for example, if you were doing an interview with a guy and he randomly just stood up and started going jumping jacks and going (wailing). Like would that be random and funny? - That would be really funny. - What kind of goofball would do that though? Like, I don't know. Like if someone did that. Oh my goodness. - Yeah. Would imagine if somebody were doing a silly dance, like doing the dab or like whip and the Nae Nae. - You know, if anybody was to do a dab, in the middle of an interview, I would be like, what's that person doing? - They're dabbing. - What is the dab anyway? - I don't know. I think the dab is like just a way of like, "Hey, yo, I'm excited as heck about something." Or... - Do you know how I feel about being here interviewing you? - What? Yeah, me too. I feel really lonely a lot of the time, So this can decrease the amount of loneliness that I have when somebody watches this interview. - [Interviewer] Are you gonna read the comments? - I will read them, yes. - [Interviewer] What do you hope they say? - I hope they say "Wow, Sofia, that's something I've never heard you say before. I'm proud of you." My dad has been an amazing role model to me among my mom. And they've taught me so many lessons. But as Beyonce says, those lessons that my dad teaches me are call daddy lessons. I think love is completely contagious. - (Sofia's dad laughing) It totally is. - Because a father's love is never gonna stop. It's always gonna keep going. Same thing with the daughter's love. And I love you, dad. - And the Kitty's love, right? - And the Kitty's love, yes. I love you. - I love you too sweetie. You're my favorite oldest daughter. - Oh, come on. (Sofia's dad laughing) - You know, it's a parent rule, right? We can't make our favorites. - No. You have to know in your own heart that what people say by you isn't true. The good things that people tell you matter them most, not the bad things. And that's what the song "Begin Again" is for me because yes, Taylor swift did experience a heartbreak, but she learned to move on from that breakup because the other guy that she was with made her few more better about herself. - We can learn a lot about life through Taylor swift. - We can. - What's the biggest lesson you've learned through a Taylor Swift song. - I think one of the biggest lessons is, don't let the people who don't accept you get into your personal life. - [Interviewer] Does Sofia ever tell you about Taylor swift. - All the time. (Sofia's dad laughing) - He kind of is over it now. - [Interviewer] How can you tell he's over it? - I would like to like Taylor swift. I really would, but I can't. I can't do it, not yet. I might need a break first. - Yeah, I can tell that he's over it because he's like, "You're blaring that music out again, turn it off." - [Interviewer] Do you ever tell him what the songs mean? - No, I never do. - He might like it if you explain the songs. You should explain every single song to him this evening after I leave. - That'd be a great idea. - Okay, is that sarcastic? - How did you know? - I just knew. It's very hard for me to make friends and my sisters know that, both of them do. They tell their friends about me all the time. And I've heard that because of other people. But they still love me. - Of course. - They still cherish me. They still want me to be around them and I think that's the important thing. Because sisters love always comes first, Right? - Yeah. - Yeah. - What is William syndrome? - It's a condition where chromosome seven is missing from your DNA. - What is the most difficult thing about having Williams syndrome? - It affects the heart mostly, and it's difficult to breathe and it's difficult to kind of have a really healthy immune system. Sometimes I can catch a lot of different types of viruses and when that happens, I get really sick. - [Interviewer] How would you define Williams syndrome to someone who's never heard of it? - Well, that's a tough one, right? So sometimes we wanna go immediately to the medical clinical. If it's somebody who is a friend or somebody who's very interested in our family, I would absolutely define it as a gift that we've all gotten. - You like laughing too. - I do like laughing. - Do you think there are types of, there are different types of laughs. - Absolutely. Have you ever done a laugh where you just couldn't control it? - Oh, yeah. - Like you were trying to stop, but like, no matter how hard you stopped, it just made it worse. - Yeah. - And the best is when you do that with other people. - Right. - And then it's just like contagious laughter. - Yeah. - I've done that plenty of times. - Yeah. I like it when somebody gives you the challenge to not laugh, they tell me a silly story, but like every single time I can't control myself. - Would you like to do a "try not the laugh" challenge? - Sure. - Okay, I'm gonna tell you a story. And this is a true story. One time I woke up and I walked out into my living room and in the living room were 20 million clowns. And they were all holding two pies each. So that means there were 40 million pies. - I think that the most important thing that any friend could do is to include me more in things. Maybe it's a trip to the mall or a concert or a hangout at my house, or hang out at your house. You know, like, invite me over to hang out more so that I can get to know you and you can get enough information to get to know me better too. - [Interviewer] How do you feel when somebody invites you somewhere. - Happy. - And then at exactly the same time, all 20 million clowns threw both pies at me. (Sofia laughing) (Sofia clapping) And that's the story of how I got 40 million pies thrown at me. - What the heck? - I don't know, it happened though. - That's really funny. That's really funny. - [Interviewer] What's it like to be 18 years old? - It feels weird. 'Cause I'm not ready for like living on my own or going out with like other people yet. Like it's just hard to be a teenager. - [Interviewer] What's the hardest thing. - To have friends that are like my age. - [Interviewer] What is it like for you when Sofia describes some of her anxiety? - Most of my life growing up, I've been a fixer. And with many of the challenges that Sofia has, including and especially anxiety, in some ways, there's not much I can do about it. Except comfort her and help her find a safe space to work through it. - It's the same thing with my OCD and my anxiety. - They work together. - They do work together, they're like besties. But like... - They're like mean girls. - They are mean girls. But they're more like mean emotions. - Yeah. - [Interviewer] What is it like to be diagnosed with OCD? - It's really hard. Because you want the same thing. You want to do the same thing over and over. So for example, when I'm on the bus, I always feel like I need to be the first to get on and off the bus. When I'm in the car, I always feel like I've to turn on the car. When I'm walking in the door from the house, to the house, I always feel like I'm the one who has to go into the house first. You know, it's very complex, but it's hard to control it. I am ruled by how I feel in that moment, and sometimes it's just too much. Like earlier today there was actually an incident where I got really mad because we were supposed to leave at 7:30, but we left at 7:35. - [Interviewer] Why did that five minutes matter so much? - Because I like to walk around in the school. It helps me to get ready for the day. It helps me to focus on positives. And there are certain ways that you can cope with different emotions. And exercise is a really good way to cope with your emotions. - What I've noticed is Sofia likes a sense of control. You know, she's never had a lot growing up. So the little pieces that she can get where she can really have a say over her life are very important to her. So things like timing, when those get screwed over by stupid things or like important people in her life like me, she gets upset, you know. When you understand where it's coming from, it's justified even if it's a little much. - Yeah. And you know, I remember in middle school, there was this aide that was in my art class. And I felt really lonely because she kept controlling what I could do. She kept giving things to me when I didn't want them. Because I can get them myself. I don't need others to do things for me. I don't need you to make things easier or harder for me. I always try to sit in the same spot, but it's difficult to do that. It's a challenge. - [Interviewer] How do you feel if somebody sits in your spot? - Sad. Kind of mad. - [Interviewer] Why does it matter? - I like my alone time. And I feel like the seat that I sit at, is the most comfortable for me. - We're talking about a lot of serious topics. Would you like another serious question or a goofy question break? - Let's do a goofy question then go back to a serious question. - Bigfoot, real or fake. - Ooh. I would say probably fake. - Why? - Because there's not a lot of stories about Bigfoot. I mean, I've heard about animals that exist like the Lochness monster or... Heck I've even heard stories- - Wait, wait, wait, who is this? - That's Chile. - Oh, Chile's coming to give me a kiss. Tell me about Chile. - He's very, very curious. - Really? - Yeah. - What's your favorite thing about Chile? - That he sniffs other people? - Does that make you laugh? - Yeah. - Why is your favorite thing that he sniffs other people? - Because that shows that he's curious, that he wants to know who you are. - Do you wanna know who other people are? - Yes, but I wanna know their true colors. Their true intentions. - Is it hard for you to see when somebody's acting or when they're being their authentic self? - Yeah. Because some people just aren't who they should be. You know what I mean? Sometimes people are just fake. And they do things because they wanna be kind not because they wanna be your friend. - Do you sometimes feel like people are just kind to you because you have a disability, but they don't want a pure and genuine friendship? - Yeah. That's how I feel a lot of the times. Like sometimes I feel like I wanna connect with people, but people do not wanna connect with me back. And that's hard. - [Interviewer] How does ADHD impact you? - It's hard for me to focus on things when too many things are going on at once. So for example, let's say I'm in the classroom and I hear somebody say, "Hi, Sofia" through the classroom door, then that makes me feel really happy but I can't focus because that one person's saying hi. - When a situation becomes very intense and there's a lot of information coming at her for multiple directions. And if it's something she cares a lot about and it's highly social, right? It's hard like she's not mentally moving as fast as the situation requires her to. And she'll shut down. One of the great things about social media and texting and what not is it actually gives her a chance to take a beat, think about it and then try and communicate one on one, as opposed to in a crowded situation, try to figure out what the problem is. - Our social norm sometimes hard for you to understand? - Definitely. Because I think it's hard for me to understand what people are telling me. Like I have difficulties with non-verbal and verbal cues. Like that's very hard. And even in social situations where I'm at a grocery store or when I'm out with friends or something and something happens, I don't even understand some times. - What is a non-verbal cue? - It's when somebody tells you something but quietly. - So it's almost like you have to put in twice the effort to have the same amount of friendship. - Exactly. She helps me understand what it really means to have a friendship. - Yeah, that is something we've been working on a lot, explaining what, 'cause people are not direct when they communicate. They just expect others to understand what they want based on the smallest cues. - [Interviewer] Sofia, is that part of why you enjoy watching the videos I make, 'cause I always communicate with the people I'm interviewing very directly and I say exactly what I mean? - Yeah. - [Interviewer] What is it like for you when you hear that communication style? - That's a very good way of communicating with me because like the chains are linked together perfectly. If I don't listen to what the other person is telling me, then there's a small, small hole in the chain, and that's what causes it to unlink. - It's almost like there's this conflict, cause she's so socially driven. So she wants to be in a social environment and wants to make friends. And then this anxiety component is kind of rearing its ugly head and keeping her from, I don't even know that it's keeping her from anything, but it's just kind of torturing her a bit when she's in those situations. I mean, she'll still, it's one of the things I admire about her most is she'll still put herself out there time and time again. Always we'll try, she'll pick herself up, dust herself off. Keep trying to make new friends or keep her old friends or what not. I mean, she just doesn't stop trying. - It's easy for me to connect with other people, but it's not easy for people to connect with me. - [Interviewer] Does having a dad who supports you help to ease your anxiety? - It definitely does. He has been in a lot of situations with me where I felt really anxious. And he has told me that, you know, you can learn to control this anxiety, but you have to control it with focus and not with letting it get to you. - [Interviewer] Is it important to validate Sofia's anxiety? - Yes, sure. It is. I think it's also important to continue working with her on tools, right? Because the reality I think is anxiety may always kind of be there in some way, shape or form. There might be different triggers, what not, but you know, she's doing a great job, developing the tools to kind of recognize the triggers, maybe take herself out of that situation. Self talk, you know, positive talk to kind of take her out of a spiral if she finds herself just in a really tough situation that depends- - You learned about positive self talk? - Yeah. - What is that? - She's really good at it. - It's when I basically do a pep talk, but by myself and nobody else is in the room. And basically I tell myself this, "This is your night, or this is your time. Do it the best way you can." - You said normally you're shy. So that means you're putting yourself out of your comfort zone right now. - Right, but the reason why I am is because I trust you. I know you're a good person. And that's difficult. Sometimes when you're anxious or when you're in a situation where your social anxiety gets in the way, you have to figure out a way to get out of it. And sometimes that's either by leaving the location, taking a bathroom break, being with people that you love and respect and they do the same thing for you. So you gotta do what's best for yourself when that happens. - Thank you for saying I'm a kind person. That means a lot to me. And I know you've been watching our videos for a long time. - I sure have. - Have they helped you? - They have. - Tell me about that. - I think the reason why is because people with disabilities are easy to relate to because they go through the same things that you go through in life. - Are you saying that I might be interviewing somebody and they say something and you think I thought that too? - Exactly. - Is it nice to know you're not alone? - It is nice. - [Interviewer] What is the best thing about life. - Friends and people that care about you including family too. But the best thing about life is to live the life that you wanna live. Not what my cats wanna live, not what my sisters wanna live, but me as a person. - [Interviewer] Have you ever wanted to live like a cat though? - No. 'Cause I wouldn't wanna crawl like this. I wouldn't wanna like... - That makes sense. - My sisters and my mom and my dad are always gonna be true friends to me. Because they're my family. I will leave them someday, but I'll always come back to them because I know they want me back. They always want me back and it's true love and that's how it's gonna stay. Right? Right. - Is there anything else you wanna talk about? - Do you think anxiety is hard to control? I feel like it is for me. - It certainly can be at times. Have you learned any tricks to help cope? - I think breathing just like doing deep breathing helps, but I think you have to learn to tame anxiety. Because it is a vicious creature and it does live inside your head. But when it's out of its cage and it gets all worked up, then you have to learn ways to put it back in its cage. And lock the cage so it doesn't get out again. - Can I share something with you? - Share. - I know a lot of my personal experience with anxiety when I felt it throughout my life, it stems from my fear of how others perceive me. - Same thing. - Perhaps they don't like me, perhaps they think I'm annoying. So on, so on. So, what I learned is that, that is my own inner thoughts and it's not reality. So what I wanna share with you is if you ever have those thoughts, just remember, I think you're awesome. I've met your family, I know they all love you dearly and there's so many people who just think you're an amazing person. - Thank you. - You're welcome, does that help to know that. - It does help to know that. - why? - Because that shows that maybe you have more friends than you think you have.
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Channel: Special Books by Special Kids
Views: 537,949
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Length: 25min 50sec (1550 seconds)
Published: Mon Apr 04 2022
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