Chapter One: Childhood and Family 15:41:27:00 15:41:40:27

Visionary Voices: Interview with Soeren Palumbo
September 25, 2013

CHAPTER ONE: CHILDHOOD AND FAMILY
15:41:27:00 –15:41:40:27

Q. My name is Lisa Sonneborn. I’m interviewing SoerenPalumbo at Temple University on September 25, 2013. Also present is our videographer Paul Van Haute. And Soeren do I have your permission to begin our interview?

A. Yes, yes you do.

15:41:40:29 –15:41:53:20

Q. Thank you. Can we start by having you tell me your name and your current occupation?

A. My name is Soeren Palumbo. I am currently a graduate student at the University of Pennsylvania Law School and the Wharton School.

15:41:55:00 –15:42:19:02

Q. Soeren I think we’re going to start our interview today by talking about your family and your early childhood. So the first logical question is when and where were you born?

A. I was born in Washington DC in 1988; September of 1988 and moved to the suburbs of Chicago soon after that. So I spent almost all of my childhood outside of the city of Chicago.

15:42:20:00 –15:43:01:19

Q. Can you tell me a little bit about your parents; maybe starting with your mom?

A. Sure. My mom Kristen grew up in the suburbs of Milwaukee; was part of a big family growing up and she went to St. Mary’s College which is an all-girls school close to the university of Notre Dame and there, while she was a student, she met my dad Drew Palumbo who was a student at the University of Notre Dame and they met there, got married, moved to the DC area for a short while and then because of some job transfers ended up in Chicago.

15:43:02:10 –15:43:41:15

Q. Was your mom a working mom?

A. My mom was a nursing student while she was at St. Mary’s and then she worked as a registered Nurse for, let’s see, probably 4 or 5 years. She, after I was born, she was still working as a nurse and then probably after my first sister was born as well so about 4-5 years she worked at a hospital. She was a neo-natal intensive care nurse. So she worked in the NICU for a couple of years and worked with babies that were about the size of a quarter. Premature, weeks and weeks and weeks premature and absolutely loved her job.

15:43:42:20 –15:44:26:15

Q. And your dad, what was your dad’s profession?

A. So my dad was a biology student at the University of Notre Dame; decided that he didn’t want to go to medical school. He wanted to go into business school and go into the business of healthcare. So he studied Business of Healthcare at the University of Chicago and their MBA program and then went into what was kind of a niche field then, was healthcare consulting and did that for a little while and then got into healthcare management and hospital management and has worked with physician groups kind of as a general manager/business manager with a group of doctors and is now a senior leader at a hospital healthcare center outside of Chicago.

15:44:27:20 –15:45:39:15

Q. Do you have any siblings and if so can you describe them for me?

A. Sure. I have three younger sisters. The oldest one just turned 22 years old so she’s three years younger than I am. Her name is Rachael. Rachael just graduated from Notre Dame recently and is now a medical student at University of Loyola in Chicago and then after her is my sister Olivia who is turning 19 in November and she is in her 4th year of high school in the town that I grew up in and then my youngest sister Sofie, Sofia, Sofie; she just turned 14 and is a freshmen in high school. All of that makes me feel very, very old. So they all live outside of Chicago and it’s been a treat to watch them grow up, sort of move on from middle school to high school from an underclassman in high school to a upperclassman from college to medical school.

15:45:40:15 – 15:46:20:06

Q. How do you fare, the only guy with all these gals?

A. It’s a… there’s a lot of feminine energy in our house growing up and I guess I get to benefit from a lot of feminine wisdom being tossed around whether I wanted it or not. My family, we get along very well, and it’s a treat to be able to get all of the different perspectives whether that’s from an internal perspective from my mom; whether that’s from a 14 year old girl; whether that’s from a medical student; we definitely all benefit from having the different voices in the house.

15:46:21:00 –15:47:50:13

Q. So how would you describe your childhood?

A. I grew up in a pretty standard suburbia. We had a backyard. We had a front yard. We had a yellow lab. We grew up in a single family house and went to the schools in town. My family and I were, I think, pretty normal from that point of view and then the diversion from that, or the departure from that, I guess, from the standard family experience was when my sister Olivia was diagnosed with epilepsy and sort of an array of intellectual and emotional disabilities and I don’t want to say dealing with that but folding that into our family experience made it a little bit different and we didn’t do the big family vacations that a lot of other families did. We didn’t spend a lot of time in crowded restaurants. We had… I think we became maybe a bit more inward looking as a family. Selected our family friends with a bit more precision and that didn’t dictate my upbringing but it certainly effected it.

15:47:51:00 –15:49:06:10

Q. So I certainly want to ask you more about your sister Olivia in this interview indeed that’s the focus of our conversation today but before I do that I wonder how you would maybe describe yourself as a child?

A. Myself as a child, I want to say I was a pretty easy child. My mom says that now. I’m not sure with how much nostalgia but I was a big reader as a child but at the same time I sat around and watched cartoons. Played video games as a 5-6-7-8 year old, tried my hand at sports better for worse. I was not a star athlete but enjoyed playing soccer, playing other sports. I was a…. school was a big part of my life as a child as with today so that was a focus growing up. I really loved intellectual challenges, academic challenges, and had a good group of friends. Probably a smaller group of friends maybe than what other people had but never felt ostracized or isolated certainly from a social perspective.

15:49:06:25 –15:50:19:00

Q. Do you have a favorite memory from your childhood?

A. A favorite memory from my childhood; I… one of them certainly there are a lot of them but one of my favorite memories from my childhood was my dad played soccer at the University of Notre Dame. He was a very good soccer player and he coached my kid’s soccer team. So we were 7-8-9 years old. You know barely able to lace up our cleats and he was out there trying to teach us how to play soccer and it was a great opportunity to spend time with my dad and to see him in a light that was different from at the dinner table or sitting around at home afterwards. It was a good opportunity to see him in an activity that he felt really confident in; that he was excited to bring to other young people. So that was… we played, he coached my soccer team probably 4-5 years and those were great years.

Q. Thanks.

CHAPTER TWO: EMERGENCE OF OLIVIA’S DISABILITY
15:50:19:10 –15:52:07:05

Q. So Soeren you had referred to your sister Olivia’s disability. I wondered if you could perhaps describe it in a little more detail.

A. So Olivia has what doctors have told us is cortical dysplasia which in my layman’s knowledge is a zone of malformed tissue on her brain and depending on where that zone malformed tissue lies on the brain it can have different effects. With Olivia specifically it resulted in epilepsy. She’s had seizures throughout her life, varying degrees of severity and in addition to the epilepsy she has been diagnosed with a pervasive developmental disorder so she falls somewhere in the ASD autism spectrum. We’ve not done a very precise battery of autism tests, very precise diagnostic battery, we felt that she is who she is and we haven’t really been convinced of a lot of upside in doing a more onerous and precise diagnostic battery. She’s in her 4th year of high school. She’s in a special education classroom. She certainly learns and has gotten better in reading and math over the last couple of years but has, at the same time, does have anxiety challenges that maybe some of the rest of us don’t have or challenges in typical human interaction because of her disability.

15:52:24:25 –15:54:09:25

Q. SoSoeren was Olivia’s disability apparent from the time of her birth?

A. No. So Olivia’s disability didn’t manifest until she was about 18 months old. She was a typically developing child. She was certainly healthy when she was born and she was hitting all of her developmental milestones. She was beginning to, 18 months, she was certainly crawling; maybe even beginning to walk and she, there was one night where we were, as a family, I was if she was 18 months old I was maybe six. My sister Rachael was probably about three years old at that point and we were, it was after dinner, we were getting ready for bed and Olivia had a grand mal seizure and caught all of us completely by surprise and she, my mom who was a nurse, was able to at least sort of jump into action but we very quickly had emergency services at our house and she spent some time in the hospital and after that her seizures just sort of came on in full swing and she had to varying degrees as she got older, severe seizures, less severe seizures, more constant seizures, less constant seizures and she from 18 months then sort of took a departure from the typical developmental path and started having more challenges. Speaking of more challenges just basic academic problems; things like that.

15:54:10:10 –15:55:10:25

Q. You said you were six when Olivia had her seizure, her grand mal seizure; you remember that event very clearly?

A. I do. I remember putting pajamas on, getting ready for bed, and all of a sudden my parents were yelling. There was sort of a lot of confusion in the house certainly for a six year old and I remember my sister Olivia just sort of laying on my parent’s bed and not really understanding what was going on with her and then obviously when the paramedics came we had all these other people running through the house taking my sister away and I remember just having to go even to school the next day and trying to explain to classmates or to a teacher what had happened and not really grasping what it was besides she was sick and needed some doctor’s help.

15:55:16:05 –15:58:34:25

Q. So after Olivia’s initial seizure and subsequent seizures; how did life change for her and your family?

A. I think the first way it changed is all of a sudden there was a pretty serious health concern at our house. There was. Leaving aside all of the social effects Olivia was on the cusp of life and death. There is a grand mal seizure and she stops breathing for a couple of minutes; that’s it. So I think our first priority was to address that health concern and we, my family, had sort of a battery of pharmaceutical interventions. She was on a number of medications for a time. We tried a diet called the Ketogenic diet where her dietary intake was very, very closely and precisely monitored down to the tenth gram and different types of food. We had some success with that. Her seizures stayed away for a couple of years while she was on that but it affected our family in that Olivia could never eat with the rest of us were eating or twice a week my mom had to sit down for hours and set out Olivia’s meals for the rest of the week and then following that we have tried different pharmacological cocktails of different seizure suppressants and managing the side effects of the seizure suppressants. Like I said Olivia has some anxiety challenges. She’s on anti-anxiety medications that might have a different side effect and might need a different medication to combat the side effect so the health concern has been sort of top priority in our family and then once Olivia got a little bit older and some of her differences became a bit more apparent. When you're 18 months there’s less of a noticeable difference. When you became three, four, five years old it becomes a bit more readily apparent and it became more of a challenge to go to a crowded restaurant because if Olivia got anxious or excited it was very, very easy to sort of spill over into a scene at the restaurant and sort of being everyone’s eyes on us or became Olivia was really too anxious to fly on an airplane leaving out my parent’s anxiety of putting a child with a seizure disorder on an enclosed place for three hours. So traveling was a bit of a challenge. Going on family vacations was a bit of a challenge and like I said, my parents, I think had to limit their network of family friends to people they felt comfortable around Olivia and people that they could depend on with Olivia if they needed to. So as she grew up there were those health implications and that sort of developed out of that some differences in just the social dimension of our family.

15:58:36:25 –16:01:03:10

Q. What did your parents tell you and your sister Rachael; I don’t think Sofie or Sofia…

A. Sofie.

Q. She prefers Sofie.

A. She does, yeah.

Q. What did they tell you about Olivia’s disability?

A. I think that they, initially when she was 18 months when it onset, it was first that she was sick. There was something different with the way her brain functioned and it could short circuit in the mind of a six year old it could short circuit, things could go wrong and that she could sort of lose control and ultimately could stop breathing. I think that that was the biggest thing for a six, seven year old, me, to understand and as she grew up my, I think, my parents and my family’s understanding of what her disability was going to look like, I think continued to evolve. Both in the sense that Olivia’s disability has continued to evolve and her abilities continue to evolve and she doesn’t fit, not that anyone really does, into sort of a neat diagnostic box so we don’t really have a playbook for what it’s going to look like next year, three years from now when she’s 40 so we’ve had to be a bit reactive in seeing what she can do., where her challenges lie, and then I also think that as we’ve gotten more experience with her and just become more mature as a family, we’ve continually reassessed what our vision of her disability is. Leading us towards the empirical analysis toward what can she do, what can she not do, what do her grades look like; things like that but grasping with what… how is who she is as a person related to her disability. Are those two different things? Are they one in the same? And I think that we’ve sort of, as a family, wrestled with what I think are a bit more… I don’t want to say immature but less developed ideas of her disability into a bit more, I think, nuanced and humanistic ideas.

CHAPTER THREE: COMMUNICATING WITH OLIVIA, IMPACT OF OLIVIA’S DISABILITY ON FAMILY

16:01:03:20 –16:03:24:10

Q. 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?

A. 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.