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Simone Carr

Simone Carr is the younger sister of an individual with Cerebral palsy. In the interview, Simone describes her experiences growing up with a sibling with CP and how her experiences have evolved with her sister's condition. 

Interview 9/7/23

Background: I am Simone Carr. I'm 16. I have two siblings. I have an older sister and a younger brother. My Older sister has Cerebral palsy, or CP. And we're all a year and a half apart. 


How does having a sibling with cerebral palsy affect your everyday life?


I remember being really annoyed by the change in rules between us. For example, my sister could watch TV at all times or have sweets, and then I couldn’t. So that was a big thing when I was younger. As for now, I'd say probably the biggest aspect is the fact that she is having a hard time eating at the moment. So she frequently won't come to dinner because of the decline in her condition. So we've seen things happen with that. She doesn't come to dinner now on big holidays. And also, we don’t watch shows together anymore, and she doesn’t want to go out and get ice cream anymore. That was an option yesterday, but we couldn’t get ice cream because she didn't feel comfortable. 


Do you ever worry about what her future is going to look like? 


Yes. Yet again, with the decline in the past year, her shifts in school definitely changed drastically. As a kid, she was really into academics. And then a lot of it was ruined during middle school with kids being more mean and less inclusive. And last year, there was a heavy consideration for dropping out her senior year. Whereas I remember as a kid, it was a big thing that she wanted to graduate with honors, and she wanted to go abroad for college in Europe. And now we're like, oh, she's staying in her senior year. She's taking some classes, and she's probably going to go to community college if that. Also, as a kid, up until probably a couple of months ago, I didn't really know the extent of her condition. So I would nervously research her lifespan, and I didn't know if her condition affected that. So that definitely threw me for a whirl.


Do you explain your sister’s condition to your friends? Do you even find yourself refraining from talking about her condition?


Yeah, I actually like telling them about it. So I definitely don't shy away from that. I don't think I pre-warn friends. Generally, I explain her condition when I’m talking to somebody, and I’ll bring up that I play sports, and then they ask if my siblings do, so that usually it fluidly runs in that conversation. I’ll then explain that she has Cerebral palsy, and they never know what that is. And so I go on to say she had a brain bleed and that it affects a lot of physical traits, but not mental traits. And so she's perfectly fine. She can speak you just might not be able to understand her well. And that usually leads into either how does she sleep? Or how does she eat? And then I may tell them about her aid.


What is your relationship like with your siblings? 

I don't think I'm deeply close to either of my siblings. It’s not like we don't dislike each other at all, it’s just that we don’t have a super tight-knit relationship. I think I'm closer to my sister Adriana, in the sense that we have a lot more conversations, or I'll make a lot of jokes at the dinner table that make her laugh. I try to displace the awkwardness in that sense by kind of making fun of her usability, which is something she's asked for. And then, as a kid, I was really big into trying to get her included in a lot of games. So I remember drawing designs for how she could play with us, or I was really into lifting up our pets so they could be in her lap.


Are there any personal strengths or skills that you feel you've gained from having a sibling with Cerebral palsy? 


It's hard to say, considering I've never lived without her. But actually, for high school applications school, I wrote an entire essay on learning the difference between equity and equality, which is something I could only really put words to at the end of 8th grade when I wrote it. But kind of rounding back to the fact that she had different rules, there were different ideals for us in the family. And I remember, as a kid thinking it was really unfair. And although certain things were robbed in me just because of the family dynamic, you do have to go along with what works in a non-nuclear family and be okay with the fact that different people get different things based on their needs. 


Is there anything else that parents have done to support you as the sibling of an individual with CP?


As a family with three kids, there's a lot of setting aside time for different kids, but I don't think my parents were ever really strong on setting aside time for her and then setting time for us. It was just more like, we all had our time. But I think the closest I could get to that was when I was probably around nine or 10. My sister had to get surgery, and instead of making that kind of a downer, my dad, my brother, and I all went on a camping trip. And it was like the most fun time ever. We were gonna go on a trip soon to the jungle and do a bunch of heavy sports because my brother and I didn’t get much of an opportunity to do that during trips as a kid, but I think it is not an option anymore because my dad actually got into an accident. But yeah, I think there was more time with specific siblings rather than specifically with my sister rather than me and my brother.


Is there any advice that you would give to parents to support the siblings? 


As a parent, I think it would have been nice had they explained this condition more to me. And maybe that's because I tend to have a more anxious view of that side in which I was obsessively researching things and finding all these worst-case scenarios. But I don't think I ever told them. But I think in a lot of situations, especially when I was maybe 10 or 11, going more in-depth and communicating to me what Cerebral palsy would mean for my sister’s life would have been more useful than just assuming that I was okay with whatever was currently happening.

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