Chapter 3: Sami's Childhood
19:18:46:00 - 19:20:21:00
Lisa: So earlier Sami, we were talking with you and Jackie about your childhood and some of your school experiences. If it's ok I'd like to ask you more about that. Jackie is your older sister.
Lisa: And I do know from our previous conversations that when she was little and an infant she was ill. And I know you wouldn't remember that because you are younger than she is. But can you tell me what you know about that from sort of family stories?
Sami: I just remember that my mom told me that I lived with my grandparents for a while and uh because my dad would be working and then my mom would be at the hospital a lot with Jackie. But I don't, I mean I don't really remember any of that. I don't remember being with my grandparents a lot or anything but I do remember she told me that one time, it was like I think it was Easter or something and Jackie was in the hospital and they brought me to visit and I was like running up the hallway and my mom was like, "Oh Samantha!" and I ran up and I slapped her across the face, and all my like grandparents were like Carol, you're going to let her do that to you? And she was like, "Yeah, I haven't been around" and I mean that's all I really know. I just remember, I also remember from pictures she had this cast thing on because she had an IV for something. All I know is she had leukemia and she had to wear like a cast for a little bit.
Lisa: I just want to be clear; it was Jackie who had leukemia?
Sami: Yeah, Jackie had leukemia.
19:20:22:15 - 19:21:18:15
Lisa: We talked a little bit about you playing together when you were little. What do you remember about playing with your sister, with both of your sisters?
Sami: I was probably like the older sister because I definitely bossed them around. And I definitely, like, manipulated Jackie a lot. That's mean to say but I definitely did. Like, if she had something that I wanted I'd be like, oh well let's just trade. Here, this one is better for you and that one is better for me, you know. I did that with my younger sister too, so it wasn't just Jackie, but I mean you know I was kind of the leader to them a lot. I mean once my younger sister Katie got older she kind of took over but yeah, but yeah, I mean it was fun.
19:21:18:20 - 19:21:50:10
Lisa: And you played with kids in the neighborhood? Just a typical kind of...
Lisa: Did you find that kids in the neighborhood were welcoming of Jackie?
Sami: Well it was mostly girls so yeah. We didn't really have a lot of boys in my neighborhood. If we did they were like younger. I think we had one boy. He was younger and he was, you know, nice. He was nice because he was younger than us and we'd probably beat him up if he wasn't but yeah it was fun. We had fun.
19:21:50:20 - 19:22:03:15
Lisa: You think it would've been different if there were little boys, that maybe they wouldn't have been accepting?
Sami: Probably not because, I don't know, boys are mean but they might've been. I don't know.
19:22:05:00 - 19:22:55:05
Lisa: Do you recall when you first became aware or conscious of the idea that Jackie had a disability?
Sami: It was probably like middle school-ish. I mean, I always knew she was different. My mom always told me don't say that "R" word or Jackie has Down syndrome or stuff like that because we would get into arguments. Like my mom would be, like, "go clean this up" and I'm, like, "well Jackie was playing with it too" and she's, like, "well you just need to do it" or whatever. And I'd be, like, well why can't she do it, or why can't she do this or why can't she do that? So it was probably like, I would say late elementary school, early middle school and then, like, once when we would go to the boardwalk and everyone would stare. I always wondered why but, I mean, I don't know.
19:22:55:15 - 19:23:36:15
Lisa: Did your parents help you make sense of that, why people were staring?
Sami: No, I kind of already knew. I knew she was different, but I would just stare back at them so.
Lisa: Do you think that Jackie, herself was aware that she was different from you and your sister Katie?
Sami: I honestly don't know. We would always ask her like do you know what Down syndrome is and she would kind of be, like, "Shut up, Sam" or like "I don't want to talk" or "No, I don't want to talk about it" so it was, like, I don't know if she knew and just didn't want to talk about it or if she didn't really care. I think it could be probably she just didn't really care.
19:23:38:20 - 19:24:50:00
Lisa: So you guys are about a year apart?
Lisa: Describe again why it was that you started school, elementary school, at the same time.
Sami: Oh, my mom wanted to put me in the grade, like, I started right on time and then she wanted to hold Jackie back because she could go to school until she was 21 so she wanted to get, you know, as many years as she could get in I guess and... or. I don't know why she held Jackie back but she wanted us in different grades and, unfortunately, I was really shy when I was younger and I actually found out my mom had me tested because I was so shy that they thought maybe I had some form of autism or something and so they held me back in first grade and then we started and Jackie, it was already time for Jackie to start so there was really nothing, they didn't want to hold me back again because then I would be really old so we just started the same year.
19:24:51:05 - 19:25:16:05
Lisa: Were you ever in the same classes in school?
Sami: No. I don't think so. In high school they were going to put us in the same homeroom but like I was like absolutely not. I mean I feel like such a bi-atch for being like that but I just wanted to be my own person and not... because we were always, always together so...
19:25:17:00 - 19:26:35:05
Lisa: So yeah, so talk to me a little bit about that togetherness when you were so young in elementary school. Did you have separate groups of friends? I know you had talked about playing a lot together with Jackie and her friends? Did you ever have your own friends also?
Sami: Well in elementary school since I was so shy I didn't really make a lot of friends. I was kind of friendly with the boys. I was a little tomboy-ish but that got me in trouble a lot. But yes so like I was when Jackie would have friends over I would play with all of them and that's how I got to know like more people in our grade. But once I entered middle school I kind of started doing my own thing. Like, I did girl scouts and Jackie didn't do girl scouts so I made friends through that. I did cheerleading, I mean Jackie also did cheerleading but you know I wanted us to be on separate teams because you know I wanted to be myself. And that was really... I mean then like middle school I kind of made different friends and stuff like that so...
19:26:36:00 - 19:26:42:25
Lisa: Was Jackie okay with a little bit of separation in elementary school?
Sami: Oh, she could have cared less.
19:26:51:25 - 19:27:34:20
Lisa: Were you parents sensitive to the fact that there was so much overlap and that you needed some space to be your own person?
Sami: I don't... my dad probably had no idea. My mom I think was just way too sensitive to it. Like it... I ... I don't know. She just... it was like always like a fight all the time. So I just think she was really sensitive to the face that I wanted to do my own thing and not have Jackie there like 24/7 but...
19:27:36:20 - 19:29:05:20
Lisa: Did your parents, Sami, talk to you as a family about Jackie's disability?
Sami: All the time.
Lisa: Can you tell me the sort of things that they would discuss with you about her disability?
Sami: Well when they were writing their living will, which was when I was in high school, they talked about like how they wanted her to like... I got really upset because they didn't want her to live with me because I had this plan of I'm going to buy a house and then build like an addition like I don't know, twenty feet away or have a garage with an apartment up top where she could live or something and that was always my plan and then when they were writing her living will they were saying well she is going to be doing this, this, and this. And I said "what? No she's living with me" and then they were like "we want her to be independent" and we want her to do this and that. So yeah they did, but I see her differently then they see her. Like I see the things she can do and they see the things that she can't do but they want her to do and but the things she can do, they do for her sometimes. So it's yeah... we fight a lot about stuff with her and what she can and can't do.
19:29:06:05 - 19:29:19:10
Lisa: So do you remember how old were you when you sort of hatched your plan to have her 20 feet away or in the apartment above the garage?
Sami: Yeah it was like high school. Right around the time they were writing their living will or whatever.
19:29:25:00 - 19:30:31:00
Lisa: Typical of any sibling, you wanted some space from Jackie but interestingly you had this idea that you would be always be together.
Sami: Together. Well a lot of kids... I mean the only time I really wanted my space was in high school just because that's like a really crucial time, like high school and middle school were really, like,... because you're finding out about yourself. You're finding out who you want to be, what you want to do, all that stuff and...I don't know. A lot of kids that have a sibling with a disability don't go to the same school so I think it was just really hard for me to like just constantly every day see her at school, see her at home. It was just like it never got a break away from disability. Not that I wanted, that I like needed it. Well I did need it but, like, I thought I just wanted to be selfish a little bit and not have to worry. I mean I didn't have to worry about her all the time but I did. Just the way I am I guess.
19:30:33:05 - 19:32:29:15
Lisa: You said you see what she can do and her parents, your parents see sometimes what she can't do but what they want her to do.
Lisa: Can you give me an example? Maybe something you can see she can do and they don't get or something they'd like her to do that maybe she could do if she was given the parameters?
Sami: Well I think she took the train by herself yesterday actually, yeah and my dad was like "absolutely not, she's not doing that," blah, blah, blah. And my mom was all for it and I mean, I was too, but I remember, like, when she first was learning how to take the bus I was like "she can't, no, she can't, no she's not taking the bus, no way" and my mom was like "yes she can", whatever. And I mean she did it but then there was one day where she wanted to go out and she just picked up all her stuff and left and we had no idea where she went and the bus in our area. We live close to Chester, the bus goes to Chester so we were like oh my god what if she doesn't get off at the right spot and she goes into Chester and we were all freaking out. We were all driving around, looking for her, looking for her and she was at the mall, thank God, but it was really scary and you know, there's sometimes, like, she'll leave her stuff everywhere and you know if it's, I could leave a pair of shoes and it's like you need to put your stuff away but her stuff is sprawled out all over the place. It's like she can't, she knows sometimes she can't clean up all her stuff. Really? Yes she can. She can clean all her stuff up, perfectly fine. She does it every other day. She can do it today. So like that.
19:32:31:00 - 19:33:51:00
Lisa: Did you and your sister Katie talk about Jackie's disability?
Sami: We had a really rough relationship. Uh, I was really mean when I was younger and we didn't get along too well. Even in, like, even a little after high school, we still didn't get along that great. But when I fight with my... my sister Katie isn't home a lot which I wish I was more like that but I'm a homebody. So she's always out so she's never really home so she doesn't really see the same things that I see. I mean we do agree on a lot of things, but so she... but we don't really talk about it that much. I mean we both don't like the "R word" but if someone says it she doesn't get as upset about it as I do. But there are times where like me and my mom will fight and I'll call her or text her and be like me and mom fought about this, blah, blah and she says that's ridiculous I agree with you and stuff like that so we definitely do agree on some stuff but we just don't really talk about it that much.
19:33:51:10 - 19:34:13:00
Lisa: Do you think did she also have it planned for Jackie maybe living with her or was that your plan?
Sami: No that's my plan. She - her and Jackie - could never live together. They're both very unorganized and their place would be a wreck. Clothes would be everywhere. They would probably fight a lot too.
More Interview Chapters
## About Jackie and Sami Csaniz
Born: Jackie: 1986. Sami: 1987.
Jackie: Grocery Store Courtesy Clerk, Elementary School Volunteer. Sami: Student.
Down syndrome, Family, Friends and Friendships, "R" word, School, Siblings, Special Olympics