Her Story: I Have a Twin Sister with Special Needs

“You’re not normal.”

I heard that statement a lot growing up, never from any of my classmates or friends though--only adults. I’ve heard it from family members, teachers and even some of my sister’s caregivers. The first time I heard it was a huge reality check for my 7-year-old brain. I had just finished a typical day in my life as a first grader, full of crayons, cafeteria food and recess. After school, I was taken to meet my parents, sister and teacher in a meeting room. It was near the end of my sister’s IEP meeting (and for those who don’t know, an IEP is what children with disabilities receive in school, in order to individualize their education to fit their needs) and I remember glancing out the window at the playground, watching some kids play on the swing set. My teacher must have followed my gaze, because she knelt down and whispered in my ear, “You’d rather be out there, huh? If you were normal, you could be.” I was too little to understand what it meant at the time, but years later, those words still leave me feeling outraged.

My twin sister was born with a rare neurological disorder called Rett Syndrome. To put it into simple terms, it affects the X chromosome gene, thus only girls born with the disorder survive, since boys only have one X chromosome, and girls have two. My parents say that after we were born, they were always concerned because my sister was developing at a slower rate than I was. Though she did form some words and learned to walk, girls with Rett Syndrome slowly lose the capability to perform these actions. She wasn’t diagnosed until we were 3-years-old. I remember going to some hospitals out of state, but at that point in my life, I was only concerned about whether or not the restaurant we were going to afterwards served pancakes and chocolate milk.

My sister cannot walk, she is nonverbal and she needs help to perform daily living tasks. She also has epilepsy (a seizure disorder). To many people, that’s all they see. To me, she’s a smiley, social girl who loves shopping, playing music, listening to boy bands and making annoying noises early in the morning just to wake me.

I know I’m lucky, I was born healthy. In other people’s eyes, I’m not “normal” because I have a twin sister with special needs and the effects it has had on my life.

My parents made the decision to enroll my sister and me at an online charter school, when I was in the third grade. Again, I don’t remember much because I was so little, but I do know that my parents had a big battle with our school. My sister at the time was in general education classes for the majority of the day, and the school was not accommodating with her needs. I guess I was pretty much oblivious back then. As a 7-year-old should be. There was nothing abnormal about my family; it was my reality. When I was older, I found some journals my mother had kept from back then, detailing everything that had happened, and what I read made me sick to my stomach.

When I started online school I was excited. What kid wouldn’t love the option of going to school in their pajamas? Over the years though, I learned to hate it. I watched all my friends go to football games, parties and prom. I felt like I was standing on the sidelines watching everyone play the game of life while I tried to make do with what I did have. I’m a dancer, so I’ve grown up with some amazing girls that I have known for practically my entire life. I honestly don’t think I would still be here today if it wasn’t for some of the friends that I have met at my dance studio. In high school, I won dance competitions, I was an assistant dance teacher and I was president of a couple clubs at school. My home life is what made me feel like the odd one out. I’m used to caregivers always being in my house; therapists come and go, nurses are in and out; my mom jokes that we need a revolving door. I’ve been to a lot of hospitals, I know lots of medical terminology and I’m no stranger to dealing with seizures. I know the names of adaptive equipment, and I can tie down a wheelchair in a van faster than you can tie your shoes. People in my life laugh; they said I would grow up a loser, I will never get a stable job, that I must be socially awkward, and other rude comments. A nurse told me once that I seemed to be such a happy person, despite what I have to deal with. I took it as an insult. Yes, I have to help take care of my sister a lot; has no one else in this world ever cared or looked after a family member? Why does everyone feel the need to give me such pity?

The comments of those who enter my world don’t cease to get better, even now in college. I’ve even been told that if I will never be my own person, and that no one will ever want to marry me because “I’m a package deal” – just because I have to take care of my sister when we’re older. We get stares in public, and I’ve even had people straight up ask me why I care about my sister. Just because she has a disability.

One of the best feelings ever was starting college, and taking a class for special education majors. Lots of other people were just like me--siblings of those with special needs. People who got it. People who understood.

It doesn’t matter who you are. As people grow up they start to realize that others’ opinions don’t matter. This is something I’ve really started to understand since I started college. People who say cruel things just don’t understand, and I feel sorry for them because life is too beautiful to live it with a closed mind. My sister has taught me so much. She’s taught me to always work and adapt with what you have, even if it is not ideal. She has taught me to fight for what you love, and what you are passionate about. She has taught me to always stay positive, in a world of criticism.

Eventually, you’ll find people who make you happy to be yourself. I grimace when I hear the term “normal” now. Society’s view on “normal” was never met for me. We all create our own realities, and thanks to my unique life, I’ve had so many experiences that I otherwise would not have been able to have. For that, I am thankful. Who wants to be normal when the view from above proves more enriching, and powerful? Always count your blessings; there is a reason you live the life you were given.