By Daphne Pellegrino
Nineteen-year-old Emily Singer has known from a young age that her family is different. Her twin brother, Lucas, has Down syndrome, and like many siblings of kids with the condition, Singer has not always had an easy time accepting this.
The sophomore enrolled in letters and sciences recalled that when she was younger, she was at first hesitant about him attending the same public middle school as her.
“For me, it was a question of, ‘Are they going to bully him? Are they going to look down on him?’” Singer said. “There is a difference between being a parent and being a sibling [of someone with Down syndrome]. We are at the same peer level.”
That understanding was part of what inspired Singer to create her blog, Down Syndrome Sibs, which she put together this year.
“I made it because of the National Down Syndrome Society, it is for and affiliated with them,” she said.
“There aren’t enough resources for siblings to people with special needs. I wanted to create a forum for siblings to have support. I wanted to create an outlet for people. Adjusting, I had no one like that to turn to. I want to be that for people,” she said.
The blog features stories and experiences from Singer and other people around the nation who have siblings with the condition. The website contains links to further resources for siblings interested in participating in conferences, getting involved with organizations and other events supporting those with Down syndrome.
The blog is a gesture toward those who are looking for the support they need in order to accept and grow with their siblings with disabilities. Susannah Keys, Singer’s best friend from her hometown, Montclair, N.J., noticed that it was through Singer’s connections with people with similar experiences that she was really able to accept her family’s situation.
“What Emily’s doing is incredible. She’s always been interested in writing and this is a really cool opportunity to do something that she’s interested in, especially something that hits so close to home,” said Keys, a sophomore international relations major at Boston University. “It’s a really cool way for her and siblings of those with Down syndrome to get together and share their experience
“I would love for tons of people to read it,” Singer said.
“I want there to be a level of acceptance and, you know, knowledge and awareness about disabilities like Down syndrome or Asperger’s, that makes someone different,” Singer said. “The more you read about people like me and those experiences, you realize that different doesn’t have to be bad. It can be good. It’s not a curse.”
Having started school a year later than Emily, Lucas is still attending the public high school that she attended. He is an involved, active and highly functioning member of his community, being the manager of the high school football team and employee at a local restaurant, convenience store and police station, she said.
As the years have passed, the proud sister feels that she has grown closer than ever to her brother. Moving away from home did not distance their relationship, but helped her realize how much she values it.
“I wouldn’t be the same person if I didn’t have a brother with Down syndrome, and I am very thankful for that,” she said.
Today, Singer is unsure about the extent of her future involvement in the Down syndrome community. However, she is sure of one thing: Because her brother will always be a part of her life, advocacy will as well.
“The challenges change as we get older, as our parents get older. They shift, and so, there is always something I will want to raise awareness about,” Singer smiled. “Once you start advocating, you never really stop.”