Chapter 3: Communicating with Olivia, Impact of Olivia's Disability on Family

16:01:03:20 - 16:03:24:10

Lisa: You've been describing how your family sort of gages Olivia and her progress and who she is and who she might become. How does Olivia express herself? How does she help inform your thoughts about her?

Soeren: She expresses herself in ways that are a bit different from a lot of other people. Olivia has a tendency to use a lot of echolalia in that she repeats what other people say but almost takes each phrase that other people use and puts that in a sort of her own communication toolbox and then can take that out to express herself. So she may say something like we're ready for dinner and she's repeating something that my mom had said but what she's communicating is "hey I'm hungry, when is dinner coming?" As she's gotten older she has gotten more and more refined in how she's able to communicate this and she, when you look a little bit closer at some of her behaviors I think you can see a lot of her personality coming through. For example this past weekend, we're, my whole family, big Notre Dame Fans and some of our family went to the game. My mom and Olivia were watching the game at home and Olivia, at lunch before the game, Olivia was wearing, as she insists, her Notre Dame Sister shirt. She has a shirt that says Notre Dame Sister on it and she spilled ketchup on it at lunch. It had a big red stain on it and she insisted that she change her shirt but when my mom tried to grab a plain shirt out of the closet she wouldn't wear it. She insisted that my mom find a shirt that either said Notre Dame or had a leprechaun on it because she wanted to wear that shirt to be able to watch the game. So she definitely feels a part of what the rest of our family is interested in, has passion for. And as she gets older, I think it's very interesting to watch her get better and better at being able to communicate that.

16:03:43:20 - 16:05:19:10

Lisa: So Soeren how did you communicate with Olivia as a child? I know you were describing the evolution of her communication but how did it work when you both were small?

Soeren: So when we were both very young I think it was much easier to communicate. I think that young children have a way of communicating just with, just by sharing space and being close to each other and... whether that's laying on the floor watching a movie, whether that's running around in the backyard type of thing and Olivia from a young age loved to swim so we would spend time at the swimming pool together and there was always a difference. I could sit down and have, people might call it typical give and take conversation with my sister Rachael but that was something that wasn't going with, not with my sister Olivia when I was young. So there was much more, sort of an unspoken communication and whether that's getting a hug, whether that's sitting down next to her and reading a story with her, whether that's running down to the park and spending time on the playground; it was much more shared experience rather than a shared conversation.

16:05:22:00 - 16:07:32:10

Lisa: There's certainly a certain amount of stress for every family who has a child with a disability and you were talking a little bit about your mom's strict monitoring of her diet and obviously concerns about medication, being watchful in case Olivia was to have a seizure. Did that sort of level of involvement make it more challenging for your parents to spend time with you and your other sisters or was that something you were able to balance out as a family?

Soeren: I think that it was always, it was always a challenge. I think that monitoring Olivia's different medical needs and giving attention to Olivia's unique social needs and anxiety challenges, socio-emotional challenges was something that demands attention of certainly at least one parent if not two and as Olivia... as we all grew up as a family there was... it'd be a challenge for Olivia to go stand outside for three hours while I had a soccer game so it was either mom went or dad went. It would be a challenge for Olivia to get on an airplane so we went to Disney World but it was just my mom and my sister; my sister Rachael. So it was a challenge for both my parents to stop and give 100 percent attention on something that I was doing or something that my sister Rachael was doing or even now sometimes with my sister Sofie is doing and you... I think that some people struggle with that and I don't know if envy develops out of that or some type of angst. I think that I grew up just kind of appreciating the attention that I did get and that meant when both my parents, by some stroke of luck, were able to come to something it was that much more special.

16:07:33:10 - 16:08:58:25

Lisa: Do you think that in a way that experience made you a little more independent or perhaps self-sufficient? Maybe more so than some of your peers who have typical families?

Soeren: I think so. I think so, yeah. It was something that forced, not forced, but something that prompted me to be less dependent on parental attention, to be less dependent on parental encouragement. Not that my parents weren't supporting, they were and still are but to derive other sources of identity; other sources of feedback and pride and to... I think as I grew up it was a good way to learn to shift the focus away from myself and sort of develop what I think is a lifelong path for everyone in developing a sense of selflessness and seeing the opportunity for Olivia to get the attention that she needed and the support she needed to continue to develop was something that I still am working on being a supporter of and continue to challenge myself to put that above whatever needs that I have.

16:09:01:10 - 16:11:48:10

Lisa: Certainly from the time that Olivia's disability became apparent you were old enough to realize that your sister was different; that she was developing differently. Do you remember the first time that someone outside of your family might have reacted or commented on Olivia's difference?

Soeren: Yeah I remember a number of times as a child. I remember us going into, I remember I was going into grocery stores, for example, and Olivia would... Olivia has a different, a different sensory perception, I think, than a lot of us do and she has a bit of a not reliance or obsession with but an attraction to toys that make noise and she carries with her whether she's at home in the family room or whether she's in a grocery store. So when we go to a grocery store you can hear that music that her toys playing probably in most of the aisles and we, you know, we would see people who would look, come down the aisle, look at us and turn around and go the other way or you would sort of hear mumbling as we were in line to check out and Olivia was maybe getting a little bit anxious because she had been in the grocery store for too long. You would see people turn and snicker at a restaurant and we started to do a little bit less of those things because of that, not because we absolutely couldn't handle it because we would often get negative reactions from people at restaurants and I think that as I went through school I don't think that... there weren't specific bullies who would say things about Olivia but there were certainly people, my peers, who came to the house who were just totally taken aback by Olivia and couldn't interact with her just as another human being and there were others who, at seven, eight, nine year olds did it completely naturally and I think that it's... I don't think it's a natural thing. I think that all of our human interactions are somewhat learned and developed and we get better at them but some people were better at it as eight year olds and they were the ones who came to our house more often; both because they wanted to and because we wanted them to.

16:11:48:20 - 16:13:25:15

Lisa: But how did you react as a child, you know, hearing that kind of feedback?

Soeren: I think that for a while it was... there was confusion as a seven year old, an eight year old, and a nine year old the Olivia was the only, she was the only second sister I had ever had and watching her grow up was without a huge frame of reference I didn't really understand how much different she was from other people or how much people didn't like her not fitting into a box that they had for how a six year old girl should function. So it really wasn't until I was in my probably maybe my early teens before I had a really good grasp on, I understood what Olivia was developing as and where she was but really getting a grasp on how other people were seeing her was something that took a bit more social development from me and getting a better idea of how the world works socially and what kind of preconceptions people brought to looking at her and how much they were, how much they were bothered by her, how much they were maybe even afraid of her, how much they were just ignorant of what the challenges were that she had and that also what the benefits that she brings to a family at a micro level and then to a school or a town or a society at a macro level.

16:13:47:20 - 16:15:24:15

Lisa: Do you think Olivia was aware of the reaction she might have caused amongst folks in the community?

Soeren: I think that's that a hard... that's something that I struggle with. I, on the one hand, if she does she hasn't communicated it in a way that I understand. She doesn't seem to pick up on other people's prejudices towards her and in an innocent and maybe naïve way I think that she is fortunate that she doesn't. At the same time I can't be completely confident in that because she may get all of it and I'm just unable to understand how she communicates it. So as with a lot of things with Olivia it's hard to judge where her abilities stop and where her abilities to communicate stop and where my abilities to understand her begin and there are a lot of times where I blame myself and my own lack of development in not being able to tease our exactly what it is that she's trying to tell me. So I, to be honest, after 19 years I'm still not quite sure. I assume that she does and I base a lot of my own behaviors on that.

16:15:30:15 - 16:17:12:10

Lisa: Soeren, is it sort of fair to assume that Rachael has experiences similar to yours noticing the reactions that Olivia might have caused in communities?

Soeren: I think so, yeah.

Lisa: So did the two of you sort of debrief about that; discuss the reactions to Olivia's behavior, how it made you both feel?

Soeren: Yeah so my sister Rachael is about two and a half years younger than I am and we do, especially as we've gotten older. I think it might be a lot to ask a nine year old and a seven year old and discuss what everyone's social reactions were but as we hit our teenager years and our young adult years we've definitely had conversations between the two of us. Whether it's we see a snide look from someone at a bowling alley that our family is in or whether it's Olivia's behaving slightly differently than we expect; the two of us will sit down and talk about it or if Rachael is visiting Olivia over the weekend and has a great experience she'll call me up and let me know. So we, the two of us, definitely see our role in Olivia's life as being from here forward so we definitely see each other as, not as sort of long term co-guardians but as having long term sibling responsibilities and the best that we can enable each other to fulfill those we certainly try to do that.

16:17:12:25 - 16:19:38:05

Lisa: Your sister Sofie is much younger than both of you. Is her experience living with Olivia; being Olivia's sister different, do you think?

Soeren: I think that her experience is very different. I think that it was interesting to watch Sofie grow up because she grew up having two older sisters, having Rachael and Olivia, and when she was three, four, five years old I think still grappled with why is it one of my sisters treats me so different from the other one? Why is it when I walk up to Rachael I can have a conversation whereas when I walk up to Olivia she seems to echo back what I'm saying or not giving me a direct answer? So I think that she had to develop an understanding of how her two sisters were different and then I think that she, there was a transition, I think sometime around when she was maybe seven, eight years old where she went from a younger sister of Olivia to almost a protectress of Olivia and saw herself as someone who would keep an eye out for Olivia, who when Olivia went out in the backyard Sofie would walk out there and be like "Don't worry mom, I'll keep an eye out on Olivia" and really developed into a fuller sense of what a sibling and was able to transcend the youngest sister role and just become a sister to Olivia and fulfill that in all senses. She's only 14 now so I think she will continue to develop and grow with Olivia but she has... Olivia has been there since day one for Sofie so there's been... Sofie hasn't known life without her whereas Rachael and I have at least some little bit of experience without Olivia's disability or Olivia's atypical neuro type. So I think that Sofie, in the end, may have an even sort of fuller understanding of what Olivia is and can be than even Rachael and I.

16:19:39:05 - 16:21:50:25

Lisa: Soeren earlier you had talked about the sort of circles maybe of support that you and family create around you whether you had a small select group of friends who would interact well with Olivia or at least that you could feel comfortable inviting to your house. You talked about your parents also having a smaller network of friends that they knew they could sort of entrust with Olivia. Did members of the extended family; were they part of those circles? How did they perceive and interact with Olivia?

Soeren: Our extended family has definitely been supportive of Olivia. I think that it's been a learning opportunity for them as well and when some of my extended family only gets to spend maybe two weeks out of the year around Olivia they, the adjustment to her, who she is, how she's different was maybe a little bit slower than a member of our immediate family because we spend 24 hours of the day with her but you can see in my both of my sets of grandparents how being with Olivia has challenged them, has given the opportunity to reassess what success looks like in a grandchild, what is valuable in a grandchild, what a positive contribution to the family can look like from all sorts of angle and not being wrapped in what the traditional metrics for success are but being able to recognize the value that Olivia brings even if it's of a different sort than what their other grandchildren are finding success in, in a sports field or in a classroom or things like that. I think it's been a great learning opportunity for all of them. They love her wholeheartedly as they do the rest of our family and it's been a joy to watch them grow as well; our cousins, our aunts and uncles, our grandparents.

16:21:51:10 - 16:23:47:20

Lisa: Thank you. Some siblings that we've talked to throughout this project have described this sort of experience of managing sort of social circles outside the home and circles inside the home as living in two worlds and I wonder if that description resonates with you in any way?

Soeren: I think so. I think that there's a least an instinct to compartmentalize a life when you have a sibling with a disability. I think that as a ten year old you have limited bandwidth and when the challenges or at least unique circumstances at home bleed into how things are at school or how things are in the club or with friends it can be sort of overload what a ten year old is able to understand. So I think the defense mechanism is to say ok I have my life at school., I have my life when I'm with my friends, and I have my life when I'm at home with my family and I think that's, I don't want to say it's a coping mechanism because it's certainly not a tragedy to have a sibling with a disability but it's a management mechanism. I think that as a ten year old or even as a 25 year old you're under prepared to manage all of the demands on your time and emotions between all these different worlds when you may have higher demands at home. So it certainly resonates with me. Something I saw myself doing to a certain extent, something I still do; trying to get a full understanding of what each one of those parts of my life is requires a little bit of division between them.