Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
0:32
And I’m Lori Saux.
0:34
And today we are joined by Charlotte and Riley and Charlotte’s mother, Karen. This
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is a conversation that I wish I had, before Liam was born. I wish I had this available to me, because this is just a story of love and lives well lived. Charlotte has a dual diagnosis of Down syndrome, and autism. Riley has the diagnosis of autism. And you know, the truth is none of that matters when it comes to being courageous and living our lives and just moving beyond any of the limits exterior limits that people put on us. And that’s what this conversation is about. And that’s what this conversation demonstrates. And I just wish I would have had this conversation. 13 years ago, when I was given my son, Liam, if I would have had this conversation under my belt, I think my path would have been easier. And my own courage would have been a little more complete.
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So welcome, Charlotte, Riley, and Karen. Hi, guys.
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It’s so wonderful to finally meet you. Yes,
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let’s see you. You know, we’ve both seen your Facebook page, the Charlotte and Riley forever. And we love seeing your pictures together and listening to your story through that page. And I’m so glad you guys came on to the show. We are
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to what I
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really want to talk about is there’s stereotypes of misperceptions that are out there. And those are really the narrative or the story that families are given. And historically, it’s limited, really. And it’s perpetuated the stereotypes, right? And talking to you today, like how have the stereotypes impacted you because what I’ve realized doing this podcast, one of the things that I’ve learned is, as parents, we are highly impacted by misperceptions and stereotypes. But any individual that I’ve ever interviewed with Down syndrome isn’t as impacted as the parent because I don’t believe or I’m getting the feeling that the stereotypes aren’t really part of your dialogue to either of you experience that. What I feel is as a parent, you get a list and people are telling you what your child can do. But as an individual, it’s the environment that you were around or what like the people around you believe and tell you you’re able to do more than a stereotype.
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Yeah. Is that so Charlotte?
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I think so.
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Charlotte growing up, were you aware of any of the limits that maybe were placed on you, as far as your ability for school or an education?
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I yeah, yes. I’ve been going to college now. I go to South, the sound college here. I’m doing different subjects here. And is Spanish intro to social work and history.
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Did you always know you wanted to go to college?
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I always want to go to college. Did anybody
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ever tell you you couldn’t go to college? Yes. And who told you that? You couldn’t go to college?
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Basically, England, England. Yeah,
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the whole country.
4:23
How did you so what did you do in the fit because you’re clearly going to college. When you were told you couldn’t? What did you do? What was your response? Can I answer that one? Who are we? Who? Whose voice who’s that third voice right there?
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I’m sure smother. Caren
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Kern. Oh, hello.
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Apologize. diminishes. So sometimes I get a bit muddled. What was the question?
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The question was Charlotte goes to college. Charlotte’s always wanted to go to college. Yeah, I asked. Did anyone ever tell her she Couldn’t and she said yes, all of England. And I asked how did you overcome that? Like what was you know, someone tells you no, it’s hard when someone tells you no to challenge that No, for anybody. So how did you challenge that? No? Well,
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I think we’ve got to go back to secondary school because in England, there’s like a tracking system. And so the people do GCSE, then go on to do a levels and the people will do a levels go to university. Well, Charlotte school after she passed her GCSE, got an A in science and English. And I think she didn’t do too well on the maths. They told her to not bother with a levels because she’s not University material. And no universities would ever accept her in England. And so I think Charlotte didn’t really agree with that. And so she went to university, goldsmiths, Goldsmith’s went to Goldsmith’s University, and they allow her to audit classes. So this wasn’t a degree. But it was the first person with Down syndrome, they had ever allowed to audit classes at Goldsmiths. And so that was the first start. She only took classes that goes with them. I think he went well, didn’t you? Yeah. And then she met Riley. And then when she decided she wanted to come here, we got to sit for the exam to condition you in Maths and English, and maths. And yeah, it was very long exam. And that’s how she was able to take classes here.
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For those exams, were you able to use any accommodations?
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Well, let me use the calculator for the map. See thing? I don’t really know, I don’t think they did that
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she only got accommodations, like three years ago, when she kind of thought for it, because I wouldn’t have ever use calculators, the math portion of exams, but then she cooks statistics. And apparently the professor says, professors say that it’s all using calculators and technology. Yes, yeah. So they allowed that. And she got extra time. Double, double. She got double time for the math exams, that for science, English, and all the other courses she did, I don’t think she got extra time, she got the same as everyone else. So that’s that’s what I know. I know that
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month. Incidentally. Yesterday, elementary mathematics methods course that calculators are generally only to be used for discovery based methods like not for the basic math learning like multiplication, addition, subtraction, but when you’re doing discovery based math methods, that’s when to use the calculator.
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How did you do that? Charlotte? because math is math is hard. Education is hard. I know our daughter who’s in high school now. She gets impacted when her teacher is she’s neurotypical and but when but when a teacher like criticizes or doesn’t support her, that really affects her. So how did you? I mean, how did you learn math? How did you What did you do?
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I think, for years and years,
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and tutoring? Yeah, I have a lot of tutoring in college. You were getting mostly seats on exams, either been a lot of hard work compared
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to college. How did you stay encouraged to keep going? Well,
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I just keep on going. I know all these are the subjects that call it out very difficult. And keep on trying my hardest.
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Did you go to an inclusive school that Charlotte
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went to what we call Public School, which is what you call private school. She went to she went Knightsbridge kindergarten, two and a half. And she was already reading. I had done that Patricia Goldmine program and taught her a slight vocabulary while she was having chemotherapy for leukemia. So by the time she’s two and a half, she could read probably ahead of some of the children in the kindergarten. And then she went to the Roche School, which was an independent, what you would call private school. And she was the first person with Down syndrome to go to that school. And they were very open to her because the owner of the school Dr. Rose, she has an adult daughter with Down Syndrome who worked as a as a teacher. So they were they were open to having Charlotte and she was there Two years seven. And then she transferred to an all girls school called Birchwood school for girls who hated that school. So that’s where that’s where she went to secondary.
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What didn’t you like about the school Charlotte?
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strzok camera, our camera bullies.
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She, she tried to escape from quite a few times. I think she’s killed like a two and a half meter gate, the school and they had to go hunting. It was three. It was a very high gate that was locked in she scared. So that was the beginning of her climb. But she
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you were actively trying to get away from the bullies? Yeah, yeah. One thing I want parents to hear is that a lot of times as parents, not now because Liam’s in a great school, but his old school would kind of put his behavior on other things, and not like what the situation was at hand. And so it’s just an encouragement to just really communicate and understand what your child is going through and to support them and be their voice at use. I was not aware that you had leukemia that you were leukemia survivor. Can we talk a little bit about that? Do you remember it?
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In a long time ago,
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she was told to she was diagnosed at four years of chemotherapy. I don’t think she remembers that. She probably blocked it out. It wasn’t very pleasant.
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So you’re you’re just, you’re just a strong person. You’re just an amazing, accomplished human who doesn’t really take no for an answer. Well,
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I am showing you
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I’ve got four children, she’s probably the strongest of the bull. Just got a very strong will to do what she wants to do. We I wasn’t keen on her father was a keen, none of us are brothers, brothers. None of us were keen on her moving to America. But she never mind that she’s going to do it. There was no stopping. And the same thing when she took that job in New York, none of us wanted to work in the Bronx in that horrible neighborhood. And she said, I’m going and that was
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the rest. I was even worried about sleeping at that when he was there. Because it’s like, well, I mean, I know you hear a lot of stories about Seattle, and this is up here in Washington, too. And I’ve never been heard there. But because I heard all those horror stories about New York, I was afraid of her.
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I want everybody to be able to hear your story. So you went to school in England, and then you came over to America. And that’s where the two of you met.
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Well, then we could tell the story of how we met if you want to hear it.
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I think that yeah, that that I would love to hear the story of how you met.
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Well, I’ve said this many times before that Charlotte and I met the old way, the new way we met online, but not the stereotypical way of meeting online. We weren’t on that dating website. We just happened to Grace each other’s profiles online. So it all started in that. That was May 2017 When Charlotte was speaking at the United Nations in Geneva, Switzerland. Yeah, but that was her first. Yeah, she did it twice. That was the first time it was I in May, when I saw it, and dice. It was on Facebook on the bright vibes, Paige. And like, there was just somebody I knew at the time, who mentioned my name and account there and said, Riley, I thought you would appreciate this. And so I watched your speech at the United Nations for standing up for people with Down syndrome. And I shared it on my personal profile set. And I’m with a caption, listen to her. And it was into I also thought that I realized we were the same age and I thought she was pretty. It was I thought it was too good to be true at the time because back then she was in England and I was here. But it was six months later, when we finally hadn’t started having two way conversations. That was when we had a two way connection across the media. We started with simple conversations. And over time, the info became a name started becoming like, more closer, bonding, like are more romantic and like it was like the following November when she finally asked me Do you love me like a friend or in a romantic way? I had never had a girlfriend before. Not even at a date really? Really like I had. I went to the prom but we agreed we were just going to be friends all along. It wasn’t until I met Charlotte where it and I started having this feeling and to And then finally, at the end of the day, I asked her, Well, what would you think if I said I love you in a romantic way, and she said, I would be happy and ever. In that day, even though we hadn’t still hadn’t met in person yet, we started calling each other girlfriend and boyfriend. And it was, it was, and we started having video calls to so we could actually see what each other looked like when we’re talking. And the following April was when we finally met in person for the first time that was at the hotel in Olympia, where we first met. And we spent a week together here, even though we first met personally, we felt like we did pretty much already know each other since we had been communicating across media. And then after because she didn’t hadn’t actually moved here, he actually had to go back to England. So then six, it was six more months of a long distance relationship. And then the following October, I decided to fly to England all by myself. And this, this was huge. I had never flown by myself before or traveled outside the country before I topped it off combining the two, like some people may not think of an artistic in their 20s traveling outside the country. But I did. The plane was wasn’t so bad. The scariest part was going through the customs because they thought I was it sounded like I was all shaky, because I was nervous and s and because I think they had a feeling I was trying to live there permanently. But after they talked to the car, and my mother in law on the phone, she said he has autism, you’re just scaring him. So after that, they just let me go. I’m finally a I saw her through on the other side of the customs at the train station. And then after that everything was good. We spent a week together there I got to know of England a bit. It was in Surrey where we were staying there. And also the night before I had to come back here I decided we should make this official and we decided to go to the German pub and Guildford and Diane, I proposed to her everyone clapped for us. And oh, I’m done. Of course after that I had to fly back here. But we also sent that didn’t weigh in December. And we spent Christmas and New Year’s Eve together with her family in Miami, Florida. That was the longest time we had ever met together at time more than the longer first time we ever spent more than a week together. There it was really hard to to come back here after that time. And after that we had just a long distance relationship for just eight more months. And that was it was during that time when she was in New York over the summer, actually. But then at the end of that summer, I flew back to England one last time. And after that we were we were never far from each other again. I was about to get to that. So yeah, we after I flew to England, we spent a few days there. And then we flew to Strasbourg, France to spend a week with her. Charlotte’s and grandmother. I got to know them. And to be honest, that it was actually pretty good for me. Some people feel nervous about meeting their new in laws, but I didn’t have a problem with that it was all pretty good. They all seem to like me pretty well. And after we spent a week in Strasbourg, we flew back to England for just one night and then we flew. But then we went to Venice to stay there for three nights. And that was a pretty good place. That’s one of the best cities in the world I visited it was we wish we didn’t have to leave. And after that we moved back here together. And that’s where we’ve been ever since. And she’s been doing college. And also honestly she encouraged key inspire me to go back to college because for a while, I felt like I didn’t have much motivation to be successful because I felt like what’s the point? I have no one to do it for. But now that I have her I feel like I have a module gives me a reason to do it. Than now I’m doing it. So yeah, that’s basically the story of how we met and it’s led up to this day.
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And Riley, you’re from Seattle area.
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Well actually, I was born in Astoria, Oregon, and I spent the first four years of my life there and I accent almost all of my life up to age 22. Close to the Oregon Washington border. I always lived in a town close to the state border until I 22. And I decided I had to. I couldn’t live with people living with my parents. I had to go out and start my own life in the world because I was in a small town and that really didn’t have much for me. I felt like I gotta go out to find it. So I was there when I started to move out and start my own life. And that was where it all started when Darlene and I were having our two way connection.
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So you said she’s the one who gave you a motivation? Like before, you didn’t feel like there was a reason. And just for parents listening, I think that’s so important for them to know that if if we tell you you can’t, I mean, except if you’re Charlotte, we tell you, you can’t, or don’t give you anything. Any reason, then that does settle in you, right? It does, it did, it did start to create what your future would have been. Until you meet. Miss doesn’t take no for an answer. And you’re inspired by not only her love, but also just this example of a human who shows you that, you know, it doesn’t matter what other people say, it’s what you and it really is, what you believe for you what you believe about yourself. But there’s a long period of time when exterior voices can mold that believe,
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Oh, it’s crazy how an untruth can be told to you. And then it can, it can actually happen because you maybe Believe it or just hear it so often, then it actually comes to fruition. And from the beginning, it was actually untrue.
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But look at you like just motivated by love. Yeah, to even I want to talk about the travel because that’s hard. And that’s scary for me like to think about? Did you say you were like 22? When you did when you traveled outside? 2323. So there’s so much that goes, there’s so much that goes into it for anyone but you know, just having your passport and you know, and you flew alone?
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Yes, I did. That was the first time I had flown with my family before but not by myself before. So I had to like it was up to me to know what to do going through all the security and getting my boarding pass and making sure the name matches on my ticket. That was kind of scary for me.
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Did you have a list that you took with you? Oh, not
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really I just read all the requirements on the airline website prior to leaving? And
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then was there anything that you had to do on that day that people had told you that you couldn’t or that you were afraid that you wouldn’t be able to do? I
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had never really been told I couldn’t do it. But yeah, I was afraid. One of the scariest parts for me was it said like that your name must be exactly the same as it is on your passport. My name is just Riley cope Emlen now, but back then I had a double barreled surname. And because of that it fused together on one on the airline ticket. And I’m like, Oh my goodness. But then I did some research. And I read that the security at the airport are used to that because it happens all the time when people have a name like that is added to that it also happens with names such as like O’Brien and stuff where there’s the apostrophe. So like once I was passed the check in and the security and waiting for my plane. Most of the it was pretty smooth. And then as I’ve already mentioned, after that the only really stressful part was going through the customs.
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What did you bring with you like during that that part? Because you’re nervous that your name might not match or you’re nervous of what could happen? Did you have anything with you that could that you might like, oh, have a ring, but that would make me more nervous. Yeah, no, totally. But did you have anything with you? Was there anything that you did that kept you grounded or calm?
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I was pretty much like all all shaky until I finally took my seat on the plane. I was like, okay, this person accepted it. Well, this next person accepted like Well, yeah, it was after the flight attendant looked at my ticket and just play me to my seat after that. That was the point where I calmed down. But before that, I won’t lie. I was pretty shaky. Wait, waiting at the in the terminal. That always Oh, yeah. Oh, yeah. I didn’t mention before. I also have my first legal drink on that play. And that’s like some Americans who are excited to go to Idaho, they turned 21 and have their first legal degree. I waited two additional years, two years. On not all places, I had it on the plane.
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And then when you went through customs, and they were questioning you because they they suspected Was that scary?
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Yes. It was scary. Especially since I had already been told a story of what happened with Charlotte’s brother and his a girl who tried to bring into the country once I actually, I couldn’t even tell them the truth that Charlotte was my girlfriend because if I said that they might have thought I was trying to move there permanently. Yeah.
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And you said that when your mother in law told them that you had autism? How did you feel about that? I
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actually felt like it felt supported that when she said that because she was just telling them that’s just me that there’s I think, dangerous about me that I’m just really nervous.
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Is that something that you would feel comfortable telling them if if you could do feel that they were being very aggressive or mis judging your behavior?
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Yeah, I think I think at the present today, I probably would have would have known more of what to say I probably would have said that, hey, I have autism, the way you’re encountering me makes is making me feel very uncomfortable. And actually that that did happen a little. Now in England, they actually now have passed an automated passport gate where if you’re from one of the eligible countries, you don’t even have to talk to an officer. However, when we came back from Strasbourg, France, we did talk to an officer because we incidentally, just limped down that line. But I was I handled a lot better that time. I just like when he asked What brings you to the United Kingdom, I just said, We’re just here for the night and tomorrow, we’re, we’re going to be flying to Venice. And I even had the hotel reservation printed out just in case I had to show up. But I didn’t even have to show that because I looked a lot less nervous that time. I
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didn’t really think about all the international travel how, you know, that can kind of be questioned. You know, I didn’t think about that. And then I didn’t think actually about you to getting married and how that affects Charlotte’s citizenship and all that stuff, too. I don’t know if that was an issue. But how did for both of you? What was the proposal night like?
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Yeah, exciting and nervous, because I wanted to make sure I said it exactly. The right way. But it was exciting to
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where you expecting him to propose to you. There and then. Yes, yeah. Okay. I don’t mean to jump backwards. But really quickly about the travel because we do have a lot of parents that listen, but it sounds like there was a some self advocacy that was learned in between your first trip and your second trip? How was that learned? And how do you find that it helps you to self advocate.
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Well, I feel like that after I’ve gone through something that’s that I’ve never experienced before I don’t really heavily stressful on me, it makes it makes actually makes me feel more confident in some of the things I do every day. Like another example of that is, I used to be terrified of driving on the interstate because of how fast they go. But now I’ve adopted, I’ve driven when through Los Angeles, when we went to visit our friends in San Diego, I feel like if I can do that I can do this general general rule. Like when I do something that’s, that’s out of my comfort zone and stressful and it actually looking back on it makes me feel more confident and things some things that I do every day. Where
27:51
I feel like Charlotte, you it sounds like your life has been self advocacy. Where did you learn self advocacy?
27:57
Yes, it was Lord sanquin.
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And who is that?
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He’s descending pier in the House of Lords. But like in Parliament, sort of like what you have your I guess your Senate might be the equivalent more or less. But it started with the with the documentary. That’s when you started asking me why mothers are aborting babies with Down syndrome. I think it started with that.
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I didn’t use a word without Down syndrome. Yeah,
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that was a documentary that you started asking a lot of questions about that.
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How old were you when you saw that?
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I think I was 17 or 18. I guess.
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Bomb? Did you guys watch it together?
28:39
We did watch it together because there was a woman in it. That shot knows she’s an actress that has a son with Down syndrome. I forgot what her name is. What’s the actress from Bridget jelly science. That one? Yes. Danny Phillips. She was she was in that. And then trying to start to ask, Well, why are these mothers supporting babies with Down syndrome? And then she wanted to know what my experience have been when I was pregnant with that. And so I was pretty honest. I told her exactly what happened. It was not pleasant. What happened with the doctors and hospital in England. But I mean, they kept making appointments for me to have a late abortion. In England, you can have an abortion for Down syndrome up until the time the baby goes through the birth canal. So you can have you know, an abortion on the day that you’re due to give back. And so Charlotte wants to know the whole story of everything that happened and I told her everything and then she got quite upset by that. Is that when you wrote to Kevin shoot went to law children. Yeah. Yeah. She wrote to this Lord and in the house of House of Lords and she told him that she was upset about this and that she wanted to write a speech. And then she wrote a speech and she sent it to Lord Shanklin and he thought it I guess you want him to advise if you
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want is applying, you won’t be willing
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to approve or whether or not this feature is any good. Yeah. And then launching consented to the UN. And that’s how she spoke at the UN the first time and also twice. Oh, yeah, that’s right. You spoke there again in 2018. Also
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in Dublin, Ireland. Yeah,
30:23
yeah. Yeah. And definitely, I think over 100,000 people came to hear her speak. So there were posters with Charlotte’s photo over Dublin on the side of, of pubs and things. They had her photo thing she was going to speak in Mecklenburg square. And so that’s how she ended up in Ireland speaking.
30:42
We’d love to put any links to the speeches in the show notes so people can watch those. Do you write the speeches yourself? Or do you have somebody who helps you?
30:51
Um, well, I had all my speeches in my, in my notes, right? Yeah, I did. Yeah.
31:00
How did it feel when you you went into the town and your pitchers on boards, and everybody’s anticipating your speech? How did how does that feel?
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It feels amazing. And yet he put up posters over me. So that’s amazing.
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Were you nervous to speak?
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I was nervous. First time speaking. Now I get used to it now. So I want to keep on speaking using physically
31:31
ill in Dublin. Oh, yeah.
31:33
In
31:34
Dublin, because the people were shouting her name, chanting her name. And there were so many people, and they were very loud and whistles and things. I think it unnerved her. And at one point, she looked like she was gonna be sick.
31:48
I think after that, that she calmed down. You calmed
31:51
down a bit. Yeah. But I don’t think she liked the noise. She didn’t like the people shouting, all those whistles and things they were blowing. I think that kind of under that. And I told her you don’t have to do this. And you don’t want to but she did it. Yeah,
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I feel like that would be very overwhelming for anyone. Mom, it sounds like you’ve created a really inclusive home. And just just to I was curious about the documentary and watching the documentary, because a lot of parents are afraid to have age appropriate conversations. You know, and I’ll just say this, that, like we were just speaking this morning, there’s not an equality when we’re educating our children about relationships, about sex education, these are things that, you know, besides the conversation of driving and going to college, and because it’s taken off the table, a lot of times that that doesn’t even go onto our radar, or it feels I see a lot of parents saying, Oh, you shouldn’t do that. Or you shouldn’t say that. But my goal and and wish is that individuals with Down syndrome, children with Down Syndrome have the same opportunities for the same conversations and the same expectations on their abilities. And that’s why I was asking all the questions about the documentary because
33:09
I’d have four children. I had Charlotte later in life, I knew she would have Down syndrome. You know, before I gave birth to her, I already knew I knew it six months. And I decided because they were so adamant on me not having her. And I guess I’m I’m very contrary the way Charlotte is that whenever someone tries to force something upon me, I’m gonna go the opposite direction. So they’re kept trying to push for me to terminate. And I decided no, I’m gonna have a, I don’t know if I did it out of spite, or I just didn’t like being bullied into something. But I had her and then I decided I was going to treat her like my other children. So she’s never been treated any differently. You know, we put her on skis when she was two and a half years old because we go skiing in brown. So if the other ski Charlotte was going to learn to ski, and you know, her father plays golf, so she was introduced to golf
34:05
at age six, and also a climbing so climbing
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Yeah, she does does climbing with her dad, so we never treated her any differently. I know. I always hear from other parents. Oh, if you have a child with Down syndrome, you can’t travel. That’s just a load of nonsense, because it Charlotte’s Down Syndrome did not stop us from doing anything we did before. If anything, we probably did more. I mean, Shawn’s been all over Africa. I mean someone says something mothers that oh my god you’re taking her to Africa you know the she’ll be very ill there well actually all of us got ill especially me the only one that didn’t get ill and she ate all the food all over Africa, which Charlotte so she’s obviously got, you know, a stomach made of steel. But so I just treated her like my other children. We didn’t treat her any differently. I didn’t speak to her any differently. And we never told Charlotte no You can never do that. I was always honest with her and told her, You can do it, but you’re gonna have to work 1000 times harder than somebody else, it’s not going to come easy to you. So if you really want something, you’re gonna have to work very hard, it’s probably going to take you longer than the average person. And that’s what we always told her. We never told her she couldn’t do something.
35:23
Well, the average person has not accomplished nearly what I have not accomplished, what Charlotte has accomplished. So I feel like the stereotypes what I’ve experienced on this journey, because I didn’t know anything about Down syndrome. We had some heavy, like, lean towards testing here. And we talk a lot about how the medical community really propagates the wrong narrative. from ignorance. I feel like that’s changing. But one thing that I’ve realized is, yes, like, especially getting those early milestones, Liam, walked a little later, and he worked really hard. And I got to really appreciate what it took to learn to walk, you’re highly aware of how much work goes into it. So I think that those first milestones, it’s the perseverance of not giving up that our children really have to endure. But a lot of the challenges come from society telling us no, and this is only me on the outside, like I say that you’re you’re walking the walk, you have that fire in you that you don’t give up. Charlotte, most people give up. Most people like when it’s too hard, it’s too hard they give up or if they fail the first time they give up and so that I believe, mom, that there are moms that have that mindset of them telling you, you know, putting a value and trying to push you towards something or telling you things were impossible, gave you that fire to say, hey, you know, even if you have to, even if you have to work harder, because I’m looking at someone who thought they had to give 1000 times more, but they’ve really bypassed most of humanity exponentially. They just that work that you put in because of your story and the stories that are out there, we can educate parents to know that it is possible, and maybe these institutions, maybe the medical institution, maybe the educational institution will stop putting so much energy into a false narrative. Because you you bypassed it like it’s not it’s not even a question that you could even just having the removal of the boundaries that society put on you like if you would have said I want to go to school and they would have said okay, here’s the financial aid form. And these are the classes you wouldn’t have maybe turned into this this Shuman that is an advocate. And so inspiring and I hope that just people listening to your story are watching your videos and your your love story, your your everything. When people tell them no parents had can have the courage to say you don’t know what you’re talking about. You can’t say that to any of you can’t tell me what any of my children will do. And it’s really not your place to tell me what any of my children will do. We’ve
38:15
never tried to dictate when Sally wants to do we can advise and tell her we don’t think you know living in in in the Bronx, New York is a good idea and working there is a good idea or taking the two there as a good idea. But Charlotte has something about her that is that she when she wants to do something, there’s no one that’s going to stop there, including even the fiancee at that point. He couldn’t talk her out of it.
38:43
Well, she made it back and I’m really glad she made it back.
38:46
i Oh, I know. I will always come back. You know, one piece just for my, for my lovely husband.
38:58
When you go out in the world, like you came to San Diego, what’s the reception when you go out into the world?
39:04
One thing I have noticed that when people when people like our interest, like come and talk to us some time. Sometimes they assume she’s my sister, but I tell them no, she’s not my sister. She’s my, my wife as well. She may look seven haven’t changed. Believe it or not, we’re actually both this is only four months apart and they can I even had someone think he was my daughter. And once that happens, they feel whole. But yeah, I told them I always correct them saying no, but while she may pass systemic change, she’s at the latest. When he’s seven we’re only four months apart in age. So I guess the stereotype that and I guess one of those stereotype there is they might not think someone without Down Syndrome would marry a person with Down syndrome. they injure me so I guess that’s one of the stereotypes we’re debunking when we go when we tell them who we really are. to each other
40:00
things on YouTube. Yeah. Yeah, they
40:03
were Usama. Because it’s, I’m more finished than Sharlyn. I’m not as tough. People when they say negative things, just tell people on something rude.
40:19
It’s good for you to self advocate. Yeah, I feel like there are always going to be bullies and cowards who hide behind the computer. Yeah, they hide behind the computers saying cowardly things. And that’s just trying to make people feel bad like they do. And I’m glad that you don’t give them any credence or as little as possible. Because it’s easy to say mean things. It’s hard to be a good person. Well, they
40:43
say silly things to her, and then she reacts. But I mean, someone said that she just came to this country for a green card. And to get money from the government. The government doesn’t give her a penny. So I’m not sure what they’re talking about. And didn’t someone said also that you’re rich and she married you for your money just
41:03
don’t come from all the money.
41:07
Not just people say the silliest things. It’s just all nonsense what they say. So I think they must be trolls out there real, real people saying these just silly trolls. But Charlotte usually tells them off. Good
41:20
for you. You’re a good advocate, Charlotte. So you guys have been married for a year and I understand you cook. Yeah, yeah. Yeah. Yeah. What are some of the things that you get you guys like to do together as a couple? Well,
41:35
sometimes we might occur together.
41:38
Yeah, like when we do pasta dishes. Pasta.
41:44
sauce was the
41:46
pasta. Where did you learn to cook?
41:49
Well, for my mom, she’s one asked me.
41:54
Does she teach you the family recipes?
41:55
Mom taught me about some Cuban.
41:59
First things like Cuban dishes.
42:03
When did you begin teaching her how to cook?
42:05
When she was a teenager? I started teaching. I think the first thing I told her was the calorie yo. And then I taught you by a year after that. And what else? Oh, and then you started doing pastures with with pesto and things you did that on your own. So in England, she was she was you know, cooking quite a bit. And then hear initially, a little bit now, sort of more and more every day. She’s cooking now. Because of my vision. She’s kind of kind of taken over the kitchen. Anyway,
42:36
tonight I’ll be making a rabbit.
42:39
And last night, we kind of talked a little bit over social media. But you guys it was pizza night Friday night? Yeah. And Riley, you did the dough.
42:53
What are your goals? As a couple? Do you guys have any shared goals? Well,
42:57
we want to have a nice house. And we went to the gentleman’s college so that we’re just focusing on job and personal life. And, and we also we do want to have children even though and that’s another thing we’re hoping to accomplish. Actually, we up and we have met with fertility specialists, we have been told that the odds of us having a natural born child are one to 2%. I mean, at least he didn’t say 0%. That’s, that’s so it sounds like he was trying to be supportive. But sometimes we do have a little we do sometimes feel wonder this is going to work. So that’s another thing we’re trying not to give up on.
43:38
That’s an amazing goal and a dream that should not be taken away from you.
43:45
I can see such a loving home and how supportive you would be for any child how lucky any child would would be to be in a home so loving,
43:56
you know, one of the conversations that society doesn’t have is, you know, having children is challenging for anyone. There’s a reason there’s Fertility Specialists out there, there’s a reason that there’s all these alternatives and everything because it’s just a conversation that I think that we should be more open to and understanding and, and supporting when we’re when we’re talking about supporting each other. And I think it’s really important that the doctor didn’t try to take your dream way because you have Down syndrome. And we also know individuals who have Down Syndrome who have babies. This is something that as parents, were told is impossible. And so we don’t know if you were told the same thing, mom, but
44:44
no one was ever told it was impossible because she has Down syndrome. I think the reason why she has virtually no eggs is because of the Leukemia treatment. That’s my understand is that when you said that type of chemo, she have destroyed all of her eggs. That’s That’s what that’s about not so much about Trisomy 21.
45:06
Thank you for that information. Because a lot what I find is a lot of times, we have certain information. That’s and we’re only given half the story. Yeah, I
45:15
think people hearing this, if you if we hadn’t just mentioned, if you hadn’t just mentioned the Leukemia treatments, then people would have been like, oh, okay, I assume women with Down syndrome are unable to have children. That’s kind of can get perpetuated. So thank you for, for saying that.
45:31
I know, I know, three women with Down syndrome in Spain who have had children. So I know it’s possible, but they didn’t have leukemia, my childhood. So that’s probably why. And
45:43
that’s your very personal journey as as a couple. And it’s a very sacred journey. And so I’ll stop, I mean, unless you want to talk more about it. But I think you’re still like finishing college, you know, that’s your journey. And that should be respected as we respect all couples, as your private personal journey that you take together and building your family and the possibility and just who you are, as a family already is absolutely beautiful. Thanks for just being you. The courage to be you. It’s hard to put yourself out there and just be who you are. It’s hard for anyone. And I thank you, for I just thank you for being you, thank you for standing up against anybody who ever told you you couldn’t and for being such a great example of love and what love can do. And I just love our conversation. And I wish we could have had it earlier. And I wish I would have had this available to me ahead of time because it just really, really fills my heart. And as a mom, it takes away a little bit of that unnecessary stress or things that I don’t need to really think about right now. When my son is 13 Talking to you reminds me that I support my son, I give him a foundation. I allow him to be him. I can hold my breath when he does things that scare me, but allow him to do things. Just like you know, they will say Do one thing that scares you. I just reminds me that. Yeah, I can do that. I can do that. And it’s really beautiful, when that’s a possibility.
47:37
Thank you guys.
47:39
Thank you. And thank you so much. Thank you.
47:44
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If We Knew Then - A Down Syndrome Advocacy Podcast 