9. Sibling Advocacy – Interview with Sophia Saux

Transcript:

Hello and welcome to the If We Knew Then Podcast. I’m Stephen Saux, I’m Lori Saux and I’m Sophia Saux. Today is a very special episode because with us we have our daughter Sophia Saux as a guest on our podcast welcome Sophia.

Hi.

Thank you for agreeing to come on to our podcast tonight it might be a little intimidating sitting across the table from your parents having to be completely honest I would like you to be completely honest because there’s no wrong answers and you’re just here to shed a little light a little glimpse into what your life is like and how you have been impacted by having a sibling with down syndrome that sounds good that sounds awesome okay okay so fiesta for the listeners out there tell us a little bit about yourself my name’s afia socks I am in seventh grade and I like doing improv and acting and I have a younger brother who’s ten years old with down syndrome how old are you I am twelve tell us a little bit about your brother she is super funny he loves acting out movies and he’s really fun to be around and he really inspires me a lot how does he inspire you can surprise me because there is kids out there that have doubts of him and he just doesn’t really pay attention and he just kind of he knows what he can do any kind of just does it and I I would want to be that kind of person that is just like well I know my limits and I know what I can do so I’m gonna do what I’m want to do do you think he’s aware of their doubts I’m sure he’s he’s seen locks but like %HESITATION well maybe those people don’t don’t believe me but I don’t think he really pays attention to that I think he just knows that people love him and he pays attention to the great and good in life which %HESITATION which I think is awesome are you aware the other people are doubting his abilities I have become very protective of him because I don’t really want him to know that people are doubting his abilities because I don’t want that to affect him too much I just realized that people look at him and he’s some people are like well you know he can only do this much and they have this limit set on him and I just I just naturally notice at I don’t think I I wake up I’m like I’m gonna notice everything that anyone says about my brother it just something that happens naturally where do you notice that the most armor when do you notice that the most now I’m kind of used to it but when I was younger I didn’t really understand why people were being so he can’t do this and he can’t do that because I live with him and I think I know the things that he can’t do like you can’t do a back flip but I can’t do about clips of his %HESITATION but we’re getting close but but I know that if he has his set his mind set on something that he will do it and I didn’t really understand why people just don’t even know him and just are like well you know he has down syndrome so he can’t do that you know its %HESITATION went when you say people what what people are you talking about adults were like oh your brother has down syndrome and they kinda did it with the stone like this very baby tell like very Kerrang and I didn’t understand my people so these fields so worried about it they’re like oh my gosh they were like there’s something wrong and I didn’t really understand that why people are like or anyone I really noticed it when I was at school and they saw my brother and then during class to be like %HESITATION your brother has down syndrome and it was it was kinda weird because they didn’t really know his name he just knew that he had down syndrome and it would it took a while for me to get used to that people are just gonna say that and I can’t get mad at them and it’s just it’s something that’s gonna happen seven they identified him not by his name but this one quality yeah how does that make you feel at first I was like well yeah and I tried to explain that %HESITATION there’s so much more to that to the side of him I mean %HESITATION he’s the kid that runs around at the playground and just as nice to everyone or he’s the kid that loves watching football by the field field he wasn’t identified by that he was under identified by any of his good qualities he was just identified by this one quality that everyone thought was so like batter sadder they felt they were like oh my gosh is your brother okay like they kind of did it and that kind of tone I didn’t really understand I’m like he’s fine so you feel like it came from a place of of caring but yeah it wasn’t like they weren’t mean against him but it was I kind of had to get used to that people are going to come from that tone and I can’t really change that and maybe I can educate people on there so much more to him than just having down syndrome but people just want to kinda relate you know they kind of want to have that thing where they can talk to someone about and %HESITATION I kind of just had to accept that so when they approach you so I’m guessing this was a students and teachers thanks this was students young mostly %HESITATION because I feel like teachers kind and no more so they didn’t really come from that tone but adults if I was like playing with him and they’re like oh you’re such a good sister and I was like I am but I feel like they’re they’re saying that I’m a good sister because my brother has down syndrome and it’s not you know maybe I helped him up the stairs but like anyone should help someone up the stairs that’s having a problem but I kinda I knew that I was a good sister but it was kind of like how did Liam feel about that while I have some different points %HESITATION %HESITATION I’m sorry I didn’t mean to interrupt you I I really wanna hear you had to say I was saying that even though I knew I was a good sister I felt that day dots were saying we’re saying it in a more compassionate way and it was almost like they felt sorry for me the parent they don’t feel sorry for me that I had a brother with down syndrome like it was a burden on me and I didn’t I didn’t really get why they would think that it was a burden since I love lamb and he’s so awesome and I didn’t understand why it would be a burden and I don’t really think Lee %HESITATION like paid attention to that like he just knew that I loved him and that you loved him and I don’t think he really paid attention to any of the people outside of the people that didn’t like him or had judgment judgments against him and especially today a lot of kids are a lot of adults are like oh my gosh someone said that they didn’t really even know what someone said on Instagram or set on you know just text to me %HESITATION I don’t like you and Liam doesn’t really pay attention even if someone come up comes up to him and is so mean he’s like okay and he takes that in but then he doesn’t really he doesn’t really he maybe doesn’t give a value no he he doesn’t really give it any attention and that’s that’s something that I wish people dead now and it take it take it so harshly if someone that they don’t even know very well just doesn’t like them at that’s a good point you experience pulling to a different degree and maybe you would have liked to have had that ability to let it go so it didn’t take its toll on you I did experience bullying and I eat I feel like if I was if I had more experience with William when I was that age and I saw how he didn’t pay attention to the people who were I mean I could have kind of taken that and I was like okay people she doesn’t get affected by it I shouldn’t and you guys told me %HESITATION just it’s fine don’t pay attention to them but it was hard because I didn’t I couldn’t relate to anyone that just took it like nothing like took it and and I didn’t really moves like moved on from that pretty soon after an everyone you know is it was kind of are you talking about the the bullying that you receive yes or yeah the blank that I received I wish that I had that kind of experience of seeing something I’m just not taking any of that bullying and not like being sad about it for a long period of time right and and when you say that that that kids are adults would identify lamb not by his name but by down syndrome do you use they gave up they gave his value and the fact that he had down syndrome as what I am I’m hearing yet you observed yeah that’s that’s what I have value how does that affect you as far as knowing Liam as a whole person or what your perception of doubt because I remember when your little one time you asked me if you had down syndrome and having the experience you know where kids identify or adults talking a tone about it what what did that make you feel about did that it did that impact how you felt about what down syndrome was %HESITATION it didn’t pack me when I was younger of what down syndrome was because I felt like down syndrome was I didn’t know what scientifically was behind it but I knew that if you had down chin syndrome then people would be mean to you and people would have lower expectations X. petitions of yes X. expectations of you Sophia that is a beautiful segue to the fact that you had your own challenges were you had speech therapy because you had your teeth pulled when you were little so in some ways you could you could relate I think you could see both sides of you had challenges speaking an experience speech therapy which lamb also has but you probably had a very different experience which probably feeds into what you’re talking to right about right now with expectations you have a different experience as far as having a at a challenge and how you were treated compared to how maybe your brother has been treated yes like I I took speech therapy at school but never in no one really lowered their expectations of me because of that they’re just that was a challenge that I had but they didn’t base everything that I was about she has a speech difficulty but ling %HESITATION it’s everything is based around he has down syndrome and I don’t I didn’t think that was very fair mmhm how you said that I thought that I had done trick syndrome was when I had trouble talking people made fun of me and I thought because people made fun of me I had down syndrome because well you know if you have down syndrome you made fun of him and kids can be mean Hans sorry %HESITATION and that will be a great was that that was like first tender kindergarten through like third grade I’m sorry but that my teeth start going in and %HESITATION that helped with my speech and that change that that had changed every changed %HESITATION they’re like oh that’s what you’re saying the whole time but I can also relate that experience to when this one even you or someone doesn’t understand Lang %HESITATION I understand why it’s not what it’s like to not be understood I understand where I’m trying to say something and it’s not I’m trying and there’s people are trying their best but it’s not coming out %HESITATION and I feel like if he’s trying to say something and people don’t understand him I’m like wait this is why he sang and I feel I can understand him more because I understand because you’ve been there I haven’t I’ve identified a Bender and I’ve heard I’ve heard myself and videos and I can kinda make out what I’m saying and I could understand what I was saying so and I feel like that helps me knowing and understanding that a certain challenge how did you feel when no one could understand what you’re saying I felt frustrated because I I couldn’t really hear that I had a speech difficulty I thought that I was just talking and I was like well why are these people ignoring me why are they why are they just and I got I was like I I didn’t understand expressly being young I can be like okay wait I don’t have front teeth that makes site that makes a difference that by %HESITATION and then when people started laughing at me I was like this that’s just how I talk that’s me and I I feel like right having that difficulty a kind I was like well maybe I should be more self aware maybe I you know maybe I should not talk as much but that I kind of put those thoughts away one because I was like well I’m not gonna take what people say about me and you know lower my self esteem but it was hard expression in candor to sorry that was hard and I feel like no kindergartner or third grader should have to should have to go through those challenges and it’s such a really beautiful insight that you can give on what lamb is experiencing that I never really explored with you before but you can understand what Liam feels like to not be understood and how that impacts his want to speak or express himself that’s I should take you into the IDPs you don’t understand that’s in it that’s an insight that you know we could speculate as much as we want but you have experience to say Hey when I couldn’t speak and people can understand me there was a frustration to the point that you maybe didn’t want to speak or maybe it affected your self esteem or you didn’t even understand why people were ignoring you but you felt like you were being ignored or even like what’s the reason for speaking out so what’s the reason for responding to somebody I felt like if these people are being so mean to me why you know what’s the point of talking back to them if they’re just gonna ignore me so I feel like that help me not giving them not trying to explain well that hurts my feelings and just knowing that that hurts my feelings and just moving on from that because and I’ve and I feel knowing that and knowing how that feels if Liam gets bullied I go on full of this mode of no you can’t do that because I I know how it’s what it feels like to be bullied and not have that voice of saying stop it and he tries and he’s like no don’t do that but people can’t hear him or he’s saying or they think %HESITATION you know he’s he’s small and she he can say whatever he wants and I can still do whatever I want because I’m bigger or I’m older or I can talk more and I don’t so me being able to talk more and being bigger than them I go over and I’m like don’t do that that’s so unfair and they don’t understand how that feels and I understand how that feels feels and I’m just saying you can’t do that you can’t make fun of him can’t make fun of him one thing that you saw that lamb has that you wish you had was when you were being bullied that it didn’t affect your long term because it did affect you the thing that you wish that it what you can relate to him is that when you were being bullied about the way you spoke there was a part of you that said they can understand what I’m saying so it’s I’m not gonna waste my breath sticking up for myself it didn’t make it hurt less but you you made that decision that I’m just not gonna say anything having had that experience when you were still at school with Liam when you guys were still in the same school that made you a little advocate at a very young age and so I I know I don’t know what happened during the school days but I know a few times on the playground after school I witnessed you advocating very strongly very strongly and you put me up you know we can’t teach through anger no I understand I Russians I got very passionate about you can’t do that and you pull me to aside and you’re like you have to just calm down and you can you can go over there and be like Hey that’s wrong to bully him but you don’t since yelling doesn’t solve anything and there’s this one boy I remember that %HESITATION blocked him on the side and he wanted to go down and he went let him on the slide and he was like he’s like no no move and he was Liam was telling the board to move but it was very hard to understand him so I went over and I yell because you weren’t right next to Liam at the time right I wasn’t I I think I would %HESITATION I thought Liam was alone the yes and I and that makes it easier to bully and I I was looking for Liam and I saw him and I heard the boys yelling and I came up to him and I said guys this is a slide for it but yelling slide first have you were so called no no I I was very mad and I was like this is a slide for everyone you are not the boss moved get off the side right now and let him down and they looked at me with that with a terrified look in there like okay and they moved and when I saw that boy again at a book fair I got so mad because I remember having kids bullied me and not really knowing how to tell anyone and then having them come up again and just be around me and you know there and I remember you saying %HESITATION there is a girl from your class and they believe me and I didn’t really know how to express that they bullied me so when I saw the kid there and he kind of looked at me with this look like hi I’m here and you know you can’t really do anything and I did something wrong and I know that I did something wrong I got mad because I was like your just so in this high esteem where you think you can bully someone that’s challenged and has this challenge where he can’t express how he feels clearly and you take that to your advantage and you just spoiling him harder and I remember how that felt and I got really mad about it and I yelled at the kid and after I was like well I just yelled at like the star greater I think what I’m hearing you say is the frustration or you’re identifying that bullies pick on someone that they think can’t defend themselves in smaller than them right and how frustrating it was because you’ve experienced the entire thing of and I have to tell you even as an adult sometimes someone’s teacher in a certain way and then you see him in a different %HESITATION surrounding and it’s really hard to look someone in the face that you you know is it not it is yeah as maintenance that’s it out at it’s hard for adults to can’t get through everything that that encompasses much less as a child much less a child who’s protecting their sibling I remember this because I remember the parents staring at you know because you were staring at that kid classmate of Liam’s and saying something to you and you told me and the father even did this it’s so funny because the father did the same thing where he kind of tried to brush it off and I looked at the father and said no my daughter is saying your son bullied lamb and she doesn’t really like that very much and I remember that dad didn’t know what to do with that because I think he was aware that that his son had pulled its lamb I remember that the dad when I was looking at the kid turned to me and looking at you and I said I’m sorry is there something wrong yeah he said that to you and which he should be talking to and that’s that’s one I thought there is something wrong and I have to say something about it or else he’s going to continue with this behavior and I remember after I yelled at him I kind of look back and I said I could have handled that differently but at the same time I said he deserved it because I didn’t hurt him I just call them on what he did wrong and even if he gets mad about it he he still understands that he thought that he could get away with it and it didn’t and having you support me I felt like when I couldn’t when I had a speech difficulty I didn’t really have anyone that could understand me that I could talk to and have someone else support me so standing up for my brother and then having someone else support me in defending him made me feel good and made me feel that I’m taking something that link I may have forgotten about already and just saying you can’t do that and don’t do that again to your like sticking up for yourself as well I was sticking up to this is all the things that I couldn’t do and didn’t happen to me and now I’m calling someone that did the same thing and has the same behavior like some like that the kids had towards me and just calling them on it and it felt really good it felt good that I could do that so your experience with bullies has really helped you to advocate for your brother it it has I feel like if I didn’t have the experience I would I wouldn’t really stand up to them as harshly yeah you get really mad are you used to get really mad as I do now I mean I haven’t gone mad for the past couple of months since we’ve been in quarantine %HESITATION well one for quarantine yeah but %HESITATION I I feel like if I didn’t have the experience even as hard as it was it came out for the better and DA I do that now and I’m kind of thankful for those bullies because they did something that was a low blow and just kind of made me feel bad and it turned out for the good and that’s what I like is that someone’s bad act can make a difference of good in someone else’s life and I really like that that’s what happened in my case you know that you you took something bad and made it good they didn’t do that at all you took what they gave you and and you you chose to make it something positive in your life and that’s a gift so yeah I don’t want you to give them any of that because nobody should bully anybody now and the meanness is something that I’ve never understood in this life it’s unnecessary so nobody’s allowed to do that and anything that came from it that was good was you’re doing and I really wanted to focus on the fact that you’ve you’ve chosen to take that insight that you have and it gives you it gives you a really great insight into advocating for them because I think you can even advocate I can come from a place of what’s right or wrong you know you understand you know how he could be feeling you know that it’s more than just he needs to express himself so people can understand you can touch base with the frustrations that he’s feeling or the fact that it might stop him from talking or you know anything else that you experienced and that that makes you a great advocate because you have a great empathy for him that comes from a real place of experience and the anger I think we worked through that and and you have to know that you can if that anger that you feel is your feeling yeah right and then you choose how to act on it just like you chose how to act on you know how you were treated how you chose to change that and whether you yell at somebody or how whatever you do the only reason I say making the anger to where you yell is that the yelling has more affect on you a negative affect but that anger is real and true and I’m gonna say sometimes you need T. L. you don’t ever want to hurt somebody and you don’t want to use words that are hurtful but you know if if it makes you mad and you have to express it you find a way to express it whatever is best for you and then you can let it go that is what you’re talking about having that ability to let something go so it doesn’t take its toll on you right and you know you’re you’re a kid and you learn from it and you learn what makes you feel good or you learn what doesn’t feel so good and sometimes when we yell at people I think the thing is is that in hindsight we say they probably would hurt me if I didn’t yell and if someone makes you feel bad it doesn’t necessarily make you feel better to make them feel bad too no it doesn’t Sophia you have such a pure insight to Liam’s experience with the language in where you come from and what you have been doing is you’ve been you’ve been actually beam William’s voice while he finds his own and you’ve been advocating for lamb which is something that you know that’s your data nice job that’s what we’ve been doing but it’s really the inside is is that what were all Liam’s advocates right this is if we knew them and we always ask if there’s something if if I knew then if you wanted to share anything what I would ask you is there is there anything extra maybe that you’d like to share with parents or siblings out there that are listening I don’t really focus on that my brother has down syndrome all the time it’s not something that’s constantly on my mind I don’t think it’s hard just to have a brother with down syndrome I just think it’s hard to have a brother at all or even any any sibling and if ever I get caught up or just I know I got sh dress and I thought oh this is just because my brother has down syndrome I kinda stepped back and said well anyone with a younger sibling is going to feel like I want them to be okay and I think it just comes with siblings naturally that is really such a beautiful insight I love you so much my child and I think I think that’s a really great thing to pull from it from this conversation is something that your dad and I always say and that is you know we advocate for both of our children always and to start seeing you are children as equal and whole regardless of how many chromosomes they have we’re we’re still going to have those relationships and those relationships still have to unfold we have to find our way through them and it and it doesn’t matter if there is that extra chromosome they’re really although listening to you talk and your experience and the wisdom that you have and your depth in your empathy I’ll definitely say that there are lots of gifts that have planted themselves inside of you. I love the insights you’ve given us here today as far as the relationship that you have with your brother just how normal it is and I want to thank you for that Sophia. Thank you so much for coming on our podcast.

Thank you.

And maybe you’ll come back around sometime.

I love you, Sweetness.

Yes, I love you so much.

I love you.

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