PERSPECTIVES: Growing Up with a Sister with Developmental Disabilities
My sister Melissa is three years older than me, but you could never tell. At five-feet-tall and under 100 pounds, I’ve always felt like the older one. That is mostly because Melissa was born with Down syndrome and deafness. I grew up faster than she did in every way possible – potty-training, eating, talking, walking and going to school.
As we both grew into our pre-teens and teens, the different paths our lives were going to take became more apparent. My parents referred me to as their “golden child.” And even at that early age, I knew it had a double meaning. Not only was I “perfect” in their eyes, but I had to act the part as well. I was an honor student, active in band and foreign language, always striving to do my best – never allowing myself to give up or fail.
At the same time, Melissa, the tiny, cabbage-patch-faced baby, had grown up with a wild streak and she simply became more than my parents could handle. This began a long and stressful path of finding her good schools and respite care programs. There was no perfect place or perfect formula.
At special needs schools, they didn’t have a sign language interpreter. At deaf schools, the students would make fun of her for having Down syndrome. Some schools would lock her in her room at night so she couldn’t wander around and it became apparent that other schools were doing things even worse.
That was a very hard time in my life. On one hand, I wanted to protect her, and every other child with a developmental disability, from the harsh words and deeds of the world. On the other, I was so tired. Melissa was really hard to live with a lot of the time and the stress it put on my family was breaking us apart. I didn’t want her living with us, but I felt guilty having those thoughts. I knew she needed a better place, a place to have some freedom like any young adult would want.
But then weren’t we abandoning her, like so many other kids with developmental disabilities I’d seen dumped at schools and homes over the years?
A divorce and a move would make Melissa’s future clear. Now alone, my mother had no choice but to put Melissa into a group home. I still try to avoid saying the word group home. It makes me feel like we failed her somehow. But thankfully she thrived there – going to school everyday, taking care of her basic needs, going on outings and interacting with people of different ages.
Would Melissa’s story be different if she was born now? Definitely. For one, the Internet has totally changed how we communicate. A parent who has a child with disabilities now has many resources readily available to them, including the ability to reach out to other parents. Secondly, I think the social mindset has changed so that people with developmental disabilities are seen as part of their community – going to school, working and living with their families or even on their own.
Even though my sister’s story is different, we still have our happy ending, which is all I could ever hope for.
Sarah Shay and her sister Melissa. Shay graduated with honors from the University of Alabama and is now a writer in Atlanta, GA.
Read more about Siblings in this issue:
Perspectives: Nick Perry
Expert Update: Don Meyer
Expert Update: Katie Arnold
Read more from the winter 2016 edition of Making A Difference here:
