Chapter 2: Emergence of Olivia's Disability

15:50:19:10 - 15:52:07:05

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

Soeren: 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

Lisa: So Soeren was Olivia's disability apparent from the time of her birth?

Soeren: 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

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

Soeren: 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

Lisa: So after Olivia's initial seizure and subsequent seizures; how did life change for her and your family?

Soeren: 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

Lisa: What did your parents tell you and your sister Rachael; I don't think Sofie or Sofia...

Soeren: Sofie.

Lisa: She prefers Sofie.

Soeren: She does, yeah.

Lisa: What did they tell you about Olivia's disability?

Soeren: 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.