Guest Post: Outsider Looking In

The only person I met with down syndrome as a child was Tim, and I don't think I even realized he had Down Syndrome. It was not until I was 24 that I met another individual with Down Syndrome. I met Lina on Halloween. Her family hosted a Halloween Party for our church. I came as a gypsy and Lina was dressed as a princess. She was 21 at the time, but I thought she was maybe 15. I said hello and told her I liked her costume. But after that, I don't remember speaking much to her. I think she might have made me uncomfortable. Uncomfortable in that I wouldn't know the correct way to speak to her or that others would think I was patronizing her if I engaged in a conversation.

Six months later, I found myself in the middle of a medical program and without a home. My roommates, who owned the home we lived in, had an unexpected buyer who purchased the house immediately. Lina's older sister, who was living with her family, suggested I move in with them. I thought she was joking at first. But, considering I needed somewhere to live for just two months, I made the move. 

I loved the family so much that I stayed an entire year. Even when Lina's sister moved back to college, I wanted to remain with the family. Over the course of the year, I became good friends with Lina. Her room was directly across from mine. Every morning, I woke up to her television blaring another episode of Hannah Montana. At night, she'd come in my room and show me her cd's or just say hello. 

I learned so much about her and about myself that year. One of my favorite sounds in the house was her singing at the top of her lungs to Camp Rock. I also watched in amazement as she meticulously prepared the same nightly meal every single day: two hotdogs perfectly garnished with mustard and ketchup. If I could summarize the two things that make Lina happy, it would be Hannah Montana and hot dogs.

However, that would be a drastically unfair characterization because Lina isn't just an individual who goes about her day without thinking and being mindlessly entertained. Behind her seemingly "simple" enjoyment of life is an individual with the same human desires and wishes as my own. When she was lonely at night, she would come in my room for some company. In the morning, she'd go through the things she needed to do for  the day. If the family spoke about her like she wasn't there, she would get upset. When she met one of the guys I dated, she later told me he was cute. After she completed a project, she took great pride in showing everyone her work. If someone didn't let her know of a schedule change ahead of time, she would get upset at the last-minute notification. She cared and worried about the same things I did.

One of the most striking times I had with her occurred when we read "Cat in the Hat" together. We took turns reading pages. On her turn, she came to the word "ship" and had difficultly pronouncing the word. After several tries, she paused and said, "boat." I knew then I had underestimated Lina's mental capabilities. Part of me still wonders how much she understands inside and simply cannot communicate to us.

I now live about 45 minutes from Lina and her family.  It has only been 2 months since I moved from their beautiful country home into town, but it feels like an eternity. I miss them and I miss getting to spend time with Lina. The only way for me to spend time with her is to go there, which proves difficult. We usually go on a short walk together, but anything other than that disrupts her routine. There are so many things I want to do with her and for her, but I find myself hitting the same wall: I'm an outsider. My time with her is limited and I am not her caregivers. Her parents love her deeply and they are the only ones who can decide to make any changes in Lina's daily life. 

So an outsider, what can I do to help? How can I help Lina grow and flourish when I can only spend one night a week with her?