Chapter 6: Ongoing Support for Jackie, Personal Ambitions

19:51:52:20 - 19:52:25:05

Lisa: So do you and your parents, talk about the supports that Jackie will need if one day your parents aren't able to support Jackie?

Sami: Not really. I mean they, I think, they have a plan for her that I don't know. Like I said, I've always wanted her to live with me but I mean even if they didn't have anything set up I would take care of her and I wouldn't mind because I know if it was me I would want her to take care of me if she could.

19:52:27:00 - 19:52:41:00

Lisa: Do you think has there been any kind of expectation on your parent's part that you would care for Jackie if they could not?

Sami: That they would expect me to take care of her? I don't think so. I don't think they want me to.

19:52:45:00 - 19:53:19:00

Lisa: Do you feel prepared yourself to take on Jackie's support and advocacy needs if your parents weren't able to do that.

Sami: Definitely. I mean maybe not with, like, money and stuff because I feel like that's just the headache and I wouldn't want to deal with it, no offence, but as for advocating, absolutely. I could definitely be her voice.

Lisa: Do you feel knowledgeable enough about the service system and how that works?

Sami: Mm-hmm.

19:53:51:05 - 19:54:19:10

Lisa: Should there be, or are their supports for siblings to help them learn how to navigate the system on behalf of their siblings?

Sami: I don't think there are. I mean I think there might be some kind of trainings but I don't think it's that, I don't think it's like if you're a sibling here's how to, like, help, you know? I think it's, like, what the, how the Institute has those conferences and stuff. But if you don't know about it then how would you know.

19:54:43:10 - 19:56:10:15

Lisa: I was reading one sibling who described her experience as a sibling as sort of living in two worlds...

Sami: Mm-hmm.

Lisa: ...and I wonder if that statement resonates with you in any way?

Sami: Definitely.

Lisa: How so?

Sami: Well there's my world and then there's, like, Jackie's world. So it's kind of, like, you know I get to live and be me, and then I live and help Jackie with all her stuff and well it's kind of like maybe not Jackie's world but the disability world. So I feel like I do a lot in that world and only a small part in like my own world. But yeah it's definitely different. I try to merge the two but there are a lot of things I like to do that she doesn't like to do or that you know some people wouldn't want her to do. Like I like to go to the bars on the weekends and I don't know if she would want to come to the bar with me. I mean she likes to drink Bud Light, you know, but I don't know if she would want to do that every weekend. Maybe not every weekend, but every once in a while. I sound like an alcoholic, but maybe once in a while. So I think there's like she's more sheltered in her world than I am in mine.

19:56:13:05 - 19:57:17:05

Lisa: Do you ever wonder what it would be like to live your life free of the responsibility of caring for Jackie or worrying about Jackie?

Sami: Mm-hmm. I mean I, yeah. Katie, like I wonder what it would be like to be like Katie. Not that she, this is going to make her sound bad but she is just very carefree. She doesn't worry about anything and just goes and does whatever she wants to do and I'm the worry wart. I worry about everything. Whether it includes me or not I just worry constantly. So yeah I would like to know what that's like. But I mean I also I don't know what I would do if I didn't worry about taking care of Jackie, you know? Like I don't know. I like that-- I like taking care of people so I like that. I would have to, not have to, but possibly have to take care of Jackie.

19:57:44:00 - 20:00:13:16

Lisa: What do you want for your own future either professionally or personally?

Sami: Well, my dream job professionally would be to open up a community center up in my area. I'm from Delaware County and during my - at my volunteer, I had to volunteer here at Temple. Well not here at Temple but for classes at Temple and I went to out to the Northeast, it's called NORCOM Community Center and they have a day program there for people with developmental disabilities and I just absolutely loved it. I thought it was like the greatest idea ever. Every like the every all the adults that were involved with it seemed to be having a really great time. It was kind of like school because when people with disabilities turn 21, like no more school for them and it's kind of like what now, you know? We don't have a job set up what are we going to do and I know that like when Jackie is not at work or at Scenic Hills volunteering she is really bored. She just sits in front of the TV and I feel like a lot of people with disabilities are overweight and I want to like kind of end that and you know like start... if I opened up my own community center, have like nutrition classes along with like they had music classes and computer classes and like we had like one day I was there we did a newspaper search where they had to find specific articles which I thought was really cool because it's like learning what we take for granted every day and like putting it into like uh a way they can understand it and like, what's the word I'm looking for? And do it in their own way, you know? Like she, Jackie loves to sing so it'd be awesome for her to take a music class and learn how to sing better or learn how to read music or whatever she wanted to do, play the piano and I just thought that what they had there was really great. It was like nice to, it was like kind of an after high school kind of place that got them to socialize but also they were able to learn and it integrated the community too because there was a gym so people could come and do gym, like go to the gym and work out and take classes.

20:00:13:18 - 20:00:49:15

Lisa: So people without disabilities as well?

Sami: Yeah, definitely. I feel like if I did open a community center I could get kids from high school to come in and volunteer because I know kids have to do like senior projects and I think they started doing volunteering a lot more so they could come in and volunteer and it would also help educate younger kids about people with disabilities and just open up everyone's eyes to see that everyone is the same and not, no one is, I mean no one is normal.

20:01:08:10 - 20:01:38:20

Lisa: So Sami what do you think are people's greatest misconceptions about people with Down syndrome?

Sami: That they're dumb, that they're all brothers and sisters, that they're all related somehow. I just think that people really underestimate people with Down syndrome. I know I have before, and I've been shown that you should never underestimate someone.

20:01:41:20 - 20:02:08:25

Lisa: So I put you on the spot a little bit because I kind of asked you before in front of Jackie what you liked about her but I'm wondering really if you can reflect on a little bit on what she really means to you.

Sami: She means a lot. I don't know where I'd be without her or who I would be.