Chapter 6: Soeren's Vision for Olivia, Himself

16:57:59:10 - 17:01:11:10

Lisa: You have certainly been talking about the journey that you've gone on with your sister that your whole family has gone through with your sister. What are the things you've learned about Olivia in the process?

Soeren: I think that you... you learn a lot from your family members no matter who they are. I think that Olivia's particular atypical neuro type social behaviors have given us an opportunity to really challenge our own understanding of what it means to develop as a human being and I think in the beginning when she was young my family, I certainly had, a what I think is a sort of saccharin understanding of disability that Olivia was sort of this blessed angel on earth, had some type of perpetual innocence and was... and could do no wrong which sounds nice but I think is a very one dimensional understanding of disability and I think as she's grown older we've grappled with trying to understand Olivia's disability as somehow separate from her and telling ourselves that there's some sort of... there's some Olivia underneath all of these challenges that she faces that's crying out or trying to remove some sort of mask that has been forced on her by her disability and I think that as we've gotten older we've realized that even that's not the right understanding. That they're really is no Olivia without her disability. There's Olivia with everything that goes into her; everything that is a part of her including her disability and there's no hidden Olivia underneath and grappling with appreciating every single part of her is an opportunity. It's not always easy. It's a recognition of every single chance you have to learn from her, to learn about her, and I think has led to a richer understanding of what it means to be human. There's no human underneath sort of drenched in these un-human parts. There's only her and that was, I think, something that was very liberating and enlightening in a way; to appreciate her whole person and to love her as a whole person.

17:01:14:00 - 17:03:01:00

Lisa: Parents of children with disabilities all at one point have to consider what will happen to their child if there comes a time they are unable to care for him or her. What is your parents plan for Olivia?

Soeren: I think that it's... my parent's plan is still a little bit in flux. It's the first time they've ever had to plan for the future for a child with a disability. They, you know, they've taken the first steps. Olivia turned 18 recently so they've taken the proper legal steps in relation to her minority/majority and it's something that we discuss as a family what the roles are. At this point Olivia has not expressed a desire for independence outside of the home. Olivia is still in high school so she's still very happy living at home; living with the family. If that were to drastically change in the next couple of years it's something that my family would have to address. I know that my parents are comfortable maintaining their parental responsibilities until they end and my sister Rachael and I are comfortable being a part of Olivia's life as we go forward whether that's in a direct guardianship way, whether that directly involves Olivia living with us as adults or whether that involves just being a support... a member of Olivia's support network as she lives with my parents.

17:03:02:10 - 17:04:32:10

Lisa: You're currently a student. What are you planning to do professionally and is what you're doing at all shaped by your experience with Olivia?

Soeren: Yes. I don't think that there's a part of my life that hasn't been shaped somehow by my experience with Olivia. I would like to gain, in the next couple of years, I would love to be able to gain some... a skillset, a toolbox to be able to go into what really interests me more which is non-profit management and being able to take an idea like that behind Special Olympics or Best Buddies or even spread the word and give it the design, the engine that can make it most effective to be able to leverage a limited amount of resources that non-profits have, if any resources at all, and leverage that to maximum impact. I really have, in my experience over the last six years, been blown away by the impact that non-profits have and the change that they can generate as opposed to sometimes the slower process of policy change or other types of change. That direct impact that non-profits can have is something that is appealing to me.

17:04:42:10 - 17:06:55:00

Lisa: So you're a sibling, obviously the choice is Olivia's, but as a sibling what would you want for Olivia? What do you think that she's capable of in her life?

Soeren: I think that she is capable of more than I understand. I think that I... every time I've tried to put a ceiling on what she can do, every time I've tried to come up with some formula that maps out her achievement or capabilities I have been up ended by what she has done. She learns differently than a lot of other people but she learns and she grows and she develops as a human being and I would like to see her continue to be put in circumstances that best enable her to do that whether it's a structure that minimizes her anxiety that allows her to really focus on self-growth, whether it's having the appropriate educators with her, whether it's having the appropriate resources. That's what I'd love to see for Olivia and in an extension to that I'd love to see a society that welcomes her in a way that recognizes the gifts that she brings and understands the challenges that she has but looks past them to see the gifts that she has and to give the time and the attention with her to grow themselves. For people without intellectual disabilities to see her not as an expense or a cost but as a resource, as an asset, as a teacher in her own right, and to welcome and to value her in that way.

17:06:55:25 - 17:10:20:25

Lisa: Our siblings, all of our siblings, play a wide variety of roles in our lives. I think sometimes they're our best friends, sometimes they're our greatest detractors. When did you have the most difficult time being Olivia's brother and what moments of being Olivia's brother do you feel happiest in?

Soeren: There certainly been challenges with Olivia. I think it would paint her one dimensional if I were to say it's all been happy. I think that she, some of her greatest challenges are being in social environments that are a little bit new and different for her. So for example we try to go to a movie as a family and we're sitting in a movie theatre and all of us a sudden whether it's the noise, whether it's the dark, whatever it is hits her sensory perception different than the rest of us and she's unable to be part of that and it pulls, you know, some member of my family then leaves the theatre with her and that's a movie theatre, that's one of my high school swim meets, that's a family trip that we tried to organize that the rest of us are excited to be at. It's those types of things have been challenging and not being able to sit down and communicate with her in a way that's easy for me and to be able to just sit down and say how was school today? What did you think of this? What do you think of this thing in the news? What do you think of this sports team? And be able to have a typical reciprocating conversation because she continues to challenge me and force me to grow in my communication skills in ways that are difficult. On the flip side when we spend time together and she does sit down next to me and has a conversation in the way that she knows how that is different but completely bares the love that she has for me as a brother, the passion she has the attention that she wants to give and her drive to be a part of the lives around her is something that just brings immeasurable joy and the lessons that she continues to teach on what it means to be a human being, what it means to be successful, what it means to live a full live, and to be valuable is something that makes me happy, gives me hope, makes me just the luckiest person in the world to have her as a sibling.

Lisa: Thank you.