I can't wait to make friends with you Sofia reaches out for my hand Oh! She wants to hold your hand (Sofia's mother) I would like to hold your hand Thank you for coming and holding my hand Would you like to make new friends? Sophia nods yes "Yes" thanks for telling me "Yes" Do you like Sofia? I love her so much, yeah yeah why do you love her? It's just… it's just a thing. She's supposed to love your family, but that's not the only thing. I love her way more than you're supposed to love your family. I love her most in my entire life, her little face, even though I can't squeeze her cheeks. I just want it so badly and when I see her picture I just press her cheeks "fake" because I really want to love her, she is the cutest girl I have ever met in my entire life and I love her so much right? She knows that.
I've told her thousands of times, Welcome to SBSK, come with me as I travel the world and meet people with situations, to prove that no matter how you communicate or what obstacles you face, you are always worthy of love and acceptance . Yes
I like to sit with you, Sophia Yes I do, Moah "kiss" Do you like when your mother kisses you? Do you want me to kiss you again? Is this m..
yeah yeah
I'll give you a kiss "moah" yeah
You want another kiss? "Moah" I see your dimples under your eyes, you're smiling. Her most sensitive tickle point, when she blows on her neck she laughs a lot she tries to catch her "her laugh" she is like me, when people try to tickle me, I try to catch her "he tries to catch his laugh" it has had a great effect on her brother and sister they look at her and see that their sister is not A big problem when they see other people who are helpless and different.
I feel more sympathetic and more accepting. Will you always love your sister?
Yes forever How do you know that
even when I'm 17 , I'm going to love it 17 !?
When I'm 17, she'll be 80 I hope kids know that Sofia is like them She may look different and her abilities may be different, but… But inside she's pure, a little girl of 9 who wants to make friends and wants to be loved and wants to be accepted as they are Is that right Sofia?
Yes, yes, you would love to have friends, wouldn't you?
You like to have friends, are we friends? Yes I think we are friends We are friends without a doubt Sophia hold my hand again Thanks for holding my hand again What's the best thing about your sister? The best thing about my sister, I love her smile so much, and she is kind to all the people she sees, even to people she doesn't know much, she is kind to them.
Right Sofia? She's trying to hit the "yes" button You got it
yeah, yeah Look, that's the greatest thing I love about my sister Soph, do you love your sister too? indeed ? Sophia shakes her head OK, that means yes,
how did you know? Because she did "nodded her head" How would you describe Sophia's way of communicating? Well, because of Sophia's condition,
yeah, sometimes she uses the button to communicate, sometimes she uses the eye gaze, where she can pick something up with her eyes, sometimes she expresses with words, and with Sophia, I can look into her eyes and understand what she's saying. What people don't realize is that you really don't need many words to understand each other. Some , because her condition changes moment by moment. We give her the opportunity to communicate in any way she can communicate.
Yes, how do you feel when your sister communicates? I am really proud and amazed I am really proud of her. That's one of the things I'm most proud of. She takes her time to respond.
That's what my mom tells me. Yeah, yeah, take time. If I ask like
Sophia, do you want to go downstairs? Or do you want to stay up here?
She takes a while to tell you But later she will
You just have to give her some time to tell you I'm so glad to be here with you Sofia I'm really glad to hear your story But most of all I'm glad to be your friend I'm happy to sit here with you, looking into your eyes To contact you to share a smile Are you also happy to make new friends? Yes thanks Me too
Yes I'm here in front of your face As always I'm here You're tired of me Are you rolling your eyes at me? Do you want to show them how you blinked your eyes? Do you want to see them?
You are really good at that.
Yes? Do you see that every day? Yes, she rolls her eyes at me daily
Sophia: daily she rolls her eyes at me once a day, sometimes more when I have to do medical things with her I love how Sophia is so kind She gives love to everyone She is really kind to everyone
Yes every day I tell Sophia that she The most beautiful girl on earth and that there is no other person like her.
Yes, by the way, she always agrees to that. There is no one like her in the world, and this is what makes her so unique and special.
Why is it important to give your sister kisses? Because she is cute, what is the most beautiful thing about her? It's just.. her feet are beautiful because she's so small and beautiful her little hands are so pretty, and her little face her feet, every part. Her legs, her arms. Like everything because she is the most beautiful girl I have ever seen in my life Kiss Moah and I am so happy to have her as a sister We don't even know when Sophia will be with us so it is important to tell her that I love her every day Yes it is important for her to know that she is very loved Yes that is the way I tell her Every day the number one thing I want to tell you what your parents tell you every day you are amazing the way you are thank you and you
should be proud of yourself and you should be happy yeah yeah because you are amazing I want acceptance and inclusion in this world I want to normalize disability and facial deformities I used to hide in The first 7 years of her life because I witnessed so much cruelty and discrimination.
The funniest thing I've ever been told was probably when she said thank you. When I gave her a kiss and said I love you, she clearly said thank you, and… it was surprising. Even my dad heard it. He dropped his apple because he was surprised. So if we stay silent and in disguise it will be impossible to have a chance for change there will be no acceptance if we don't
*Sophia speaking* Yeah if we don't get out there and share our story When I look at my sister I always think she's thinking of something but it's like she's thinking of something happy about us as if it were Thinking of something Happy to do something When we go to the pool Aunt Jojo is always spraying me It gives me fond memories If parents with their kids, they see your family out at the grocery store What do you want them to do? I'd like parents to bring their kids upstairs to Sofia and just say hello and treat her like everyone else.
Yeah, a lot of times people will avoid us, treat us differently, or parents will shut their kids away because they have questions *Sophia speaks*
Yeah, I know, we don't want them to feel like we have to walk away.
This quickly creates the wrong impression. We want the kids to be able to ask Sophia: yeah
yeah we do Parents might get embarrassed if they say something wrong but I just want them to know that's okay It's the only way we can teach kids about differences It seems like I can't stop looking at her because she's so cute If I think something is bad, if I'm having a bad day, I walk into her room and she just makes my day. All good things If you could tell the whole world one thing about your sister, what would it be? She is beautiful the way you are. Why do you think it is so easy for those who are not familiar with Sophia to misunderstand her? Because they don't take the time to get to know her I guess we see people and if we don't get that moment yeah
yeah, okay? If we don't get this moment, okay. This person is going to look like me, talk like me, they're just like me and then we reject them I think you have to take the time to get to know her so you see her personality and she's very bold once you do that so I think people are used to that and if they don't see something it usually brings tears out and kind of It stops you if a guy meets her and doesn't think she's like us Maybe later in the day he falls in love with her because she's so cute I just want the world to know Sophia is different yeah but, she's a 9 year old girl and she's beautiful and gorgeous She's the definition of the power of true beauty She's been through a lot in this life Yet she remains positive, happy and beautiful and I just want her to be accepted in this world I am the happiest person in the world having a sister like you I love you so much What does love mean love? Love means..
It's when, love means you care about someone so much, to give them kisses on the forehead, on their arms like I give them kisses everywhere, give them on their arms, hands, forehead, feet on their other hand, arm, leg usually tickle them a lot
yeah It means a lot to me that you take all your energy and all your effort to communicate. It shows me that
*Sofia speaks* Yes, it shows me that you care about our friendship and our relationship too *Sofia speaks* Thank you for sitting with me and thank you for talking to me *Sophia speaking* Thanks for watching SBSK We believe the world The best place is when everyone takes their time to understand each other.
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