How do I feel about having Down syndrome? Having Down syndrome designed an incredibly interesting life for me. It gave me health issues. I can’t see that well, and my brain processes things more slowly, which gives me a unique outlook on life. However, I feel like a regular person and that makes me feel good about myself. Living with Down syndrome can have some cool advantages, like getting rides from my roommates, having my meals cooked for me, meeting lots of cool people. I’m happy to have Down syndrome, because I can just be myself around my friends and my family.
I’m proud to have Down syndrome and there is not a dull moment. As an advocate, I totally understand how it feels to have a disability and it has opened many doors for me. In 2011, one of the many doors opened for me and it got me into the University of Vermont. I filled out an application to the Think College Program and I was accepted into the program. I was very excited about going to Think College at UVM and I took the following classes: Written Expressions, Intro to Poetry, Intro to Acting, Developments of Motion Picture and two Internships. This was one of the best adventures while living with Down syndrome. The next part is about “What is it really like living with a sister with Down syndrome?”
I also asked each of my siblings how they feel about their sister having Down syndrome. Skye thinks I’m perfect. “I love my sister exactly the way she is and would never change anything about her. When I see her feeling angry, hurt, sad, lonely, or frustrated I would do anything to make her feel like she is perfect, and having Down syndrome makes her even MORE perfect.” Josh loves me as well. “I love you, with or without Down syndrome. Because of our current geographic distance, it probably makes me love you more.” Cam thinks I’m wonderful, “It feels like growing up with any other sister - absolutely normal. At times, it was frustrating because it could be difficult to relay ideas or more complex thoughts but with patience it was easily done. My sister has taught me many life lessons that none other could have in the same manner. She has given me great ideas and made me a better person.”
I quizzed them about their favorite memory of hanging out with me. Skye likes working with me.
“Hanging out with my sister at the Green Mountain Self Advocates Voices and Choices Conferences. Spending time with Stirling at these conferences was so incredible because it was the first time I got to watch how amazing my sister is at leading workshops and running conferences. If I had a question, Stirling could answer it! She knows everyone and they all respect her and love working with her. I had never seen her really ‘at work’ before - it felt like seeing a completely new side of her life. I was so proud to be her sister!” Cam likes how funny I am, “There are too many to tell. I will say that, because she has a memory like an elephant, her story-telling abilities are out of this world- incredibly funny.”
Skye, who is one year younger, grew up with me, and this is how she feels about me.
“I grew up feeling like I had a twin sister. When we were younger, I never really noticed any difference about having a sister with Down syndrome. As we got a little older, I noticed it in school when I felt like people were being cruel or unkind or were acting "different" towards my sister. I was angry at people who did not understand that my sister was exactly like other people. I believe that growing up with a sister with Down syndrome has made me less forgiving of people who don't understand disabilities or are uncomfortable with them. Having a sister with Down syndrome makes me think more clearly about my future and how to make sure my decisions are okay with my sister, because she will always be one of the hugest parts of my life.” Cam enjoyed growing up with me, and this is how he feels about me. “It's an inspirational and beautiful process. Ever since an early age my sister has had no difficulty in living life much the same way I did. Growing up with her taught me about patience and kindness. Because her learning was slower than most people we, as a family, learned slower with her.”
Until recently, society thought people with Down syndrome were retarded. “People with the syndrome used to be written off as hopelessly stupid and as incapable of benefiting from any form of education. They were not infrequently abandoned by their parents and left in the care of institutions, sometimes in horrifying condition” (Palmer, 2009). The word “retard” hurts, and it’s offensive. I’m not “retarded,” and my friends with disabilities are not “retarded.”
My sister Skye thinks I’m normal, and smart. “I love her confidence. I think she is SUCH an original person - she is 100% herself and that inspires me every day. I like that she cares so much about her friends and family and keeps us all in touch with her blogs and videos. I like that she loves to learn about new things and is always exploring...new TV shows, new technology, new styles of clothing, new friends....she lives life to the fullest!” My 42-year-old brother Josh responded to my question, “What did you like about your sister with Down syndrome?” “It made me more educated and open-minded, helped me be more compassionate for people in general. I'm a better human being because of you. I like everything about you!” My little brother Cam also “loves everything! about me.” “I wouldn't trade her for the world!”
I’m lucky to live with the best family I could ever ask for, because they all enjoy living with me, and I’m thrilled to call them my family. Living with Down syndrome makes me see more clearly that I have a wonderful loving family, and I wouldn’t trade them for anything. My brothers, and my sister are my rock, and I feel the same way about my parents. Living with Down syndrome makes me love them with all of my heart, and I don’t know where I would be without them.
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