We were lucky enough to obtain the answers to some of our questions from a recent Princeton University graduate who said she felt comfortable with us posting her answers to our blog. Especially interesting to me in these answers is the overwhelming presence of guilt felt by this student. This is is something I hope to be looking into more thoroughly as our trip continues. ~Ellie
Below are her responses.
Tell me how it feels to have a sibling with special needs.
I have a mixture of feelings about having a sibling with special needs. In many ways I have learned so much from Billy, and he has enriched my life in many ways by making me appreciate things that I otherwise probably would not notice. But at the same time I've always felt some level of 'survivor's guilt', particularly because statistically speaking it should have been me who had Down syndrome (my Mom was only 31 when she had my brother and 37 when she had me--the likelihood of having a child with Down syndrome increases with age). I've always felt that if I could, I would give Billy some of my intelligence so that we could both be average, rather than having him with special needs and me at an Ivy League school.
Tell me what it's like when everything is going well.
When everything is going well, Billy is happily listening to the radio or watching Disney movies. I'm baking him cookies and my Mom's stress level isn't too elevated (it's always high up there though, she's said that she feels like she has to think for two people).
Tell me about a time that was particularly difficult for you.
Two times come to mind that were difficult, one being when my brother had a seizure in the car and another when I learned that people with Down syndrome are more likely to develop Alzheimer's disease than the average person. For the first, my family had woken up early to drive to an admitted student day at Boston College, and my brother had a seizure in the car just as we were driving back into our hometown. It was very scary trying to hold his head still so he wouldn't hit the window while my Dad drove us all to the hospital. The doctors told us that because we had changed his schedule by getting him up so early, his epilepsy medication wasn't doing exactly what it should have. I felt so so guilty and was extremely upset. And the second instance was a very jarring moment for me, emotionally and academically. I used to think I wanted to study Down syndrome, and learning that in a class made me realize that studying Down syndrome would be very, very difficult. It also threw me into a period where I very much questioned the goodness and presence of God.
In what ways is having a brother or sister with a disability complicated?
I'd say that it's mostly logistically complicated. For example, last week was graduation at Princeton, where there are multiple days of celebrations and parties that friends and family come to. But my brother doesn't do great in crowds (he walks slowly and would likely talk during the ceremonies), so he stayed home with our trusted family friend. But my Mom was stressed the whole time, and my family drove home every night to take care of Billy where most families just stayed in Princeton the entire time. I know it was taxing on my family and I feel very bad about that. Having Billy in my life also sometimes makes me wonder if the career path I've chosen (biology research) is really my own desire, or some sort of reaction to guilt I feel about being normal.
What are your goals for the future for yourself? For your sibling? For your parents?
I'd like to be either a biology professor or work in research either academically or in industry. I'd also love to write science books for children. Personally, I hope to get married and have children and all that jazz. I'm my brother's legal guardian should anything happen to my parents as well. For Billy, I hope that he stays healthy for a long time and that he never gets Alzheimer's disease...I really think that would be too much for my Mom to endure. For my parents, this is perhaps cruel to say but I hope that they both outlive Billy. My Mom puts a lot of pressure on herself to take care of my brother perfectly, and she deserves some years to put herself first.
Tell me some strategies that you use to cope with the challenges of having a brother or sister with special needs.
I think burying my nose in books was always a way to cope with a number of things in my life. And I think choosing a career path where I can help people who suffer makes me feel like I am fulfilling some sort of purpose.
How has your relationship with your sibling changed or not changed over the years?
When I was very little I didn't really understand much. I had a little book called 'My Sister is Special' which explained Down syndrome in terms that a child would understand, and it's a book that's very dear to me. I used to wish that I could play with my brother the way other kids played with their siblings; now I wish that I could have a conversation with him. Nowadays I understand the science much better. I understand that you can't simply cure Down syndrome. But I'm hopeful about a lot of the research being done...not for my brother's life but for others in the future.
How does having a sibling with special needs affect your plans for the future?
For me, it has defined my academic and professional path a great deal. Personally, I know that at it's possible that Billy will be mine to care for someday. I worry about being able to do things the way my Mom and Dad would want. I know they've set aside money to put him in a group home or pay for a live-in nurse, but I really don't know what I'll be comfortable doing yet. It's something that lingers in the back of my mind, and whenever something happens with my brother (ex. a seizure) I get very emotional and start to wonder about the future. I wonder how my own future children could be impacted by having Billy in the house. I wonder how he would be treated in a group home. It's a lot to think about.
Has having a special needs sibling shaped who you are as a person?
I think I'm much kinder and more thoughtful. I'm grateful for the simplest things, since I know how lucky I am to be able to do things like walking and talking in sentences. I've never been one to drink or do drugs, because I would never want to harm my ability to think optimally.
How has having a sibling with special needs affected your social life growing up?
I think having Billy in my life made me grow up faster than other kids, and that personality difference definitely shaped who I was friends with and what choices I made. I tended to hang out with people who also were very motivated...I was always friendly with the popular crowd, but not included. I don't think this was actively because of my brother, but I think I was perceived as a nerd who didn't drink and therefore wasn't super social. I was focused on academics and extracurriculars, and found friends who were similar.