Sibs' traverse the states
Ellie Rosenthal i16 fills a gap in autism-spectrum awaren
Driving for 10,000 miles through 27 states with three close friends: It sounds like any college student's dream summer trip. For Ellie Rosenthal '16, however, her road trip was more than a cross-country escapade but rather a seven-week journey into the lives of "sibs."
On June 11, Rosenthal and two friends, Renee Frederick, a sophomore at the University of Texas at Austin and Claire Nuchtern, a sophomore at Princeton University, embarked on a road trip across the country to document the stories of "sibs." "Sib" is a term for the sibling of an individual with developmental disabilities.
The Martin Dale Summer Award made the project possible. The award is a competitive scholarship that funds inspiring summer projects. Nuchtern sent a proposal and was one of the few students to receive the grant.
The trio interviewed over 90 sibs, ranging from five to 85 years old. Departing from Houston, Rosenthal and her friends drove through the southern states, up the east coast to Boston, and then out west, ultimately ending in Rosenthal's home state of California.
For Rosenthal and her friends, their "Sibs' Journey" was not just a way to pass the languid summer months-each had her own personal motivation for making the trip. For Rosenthal, that motivation was her sister, who was diagnosed with autism, along with other mental disorders, as a baby.
"[It's] one of those classic stories," she said, in an interview with the Justice. "My parents really wanted to get pregnant, but they couldn't so they adopted [my sister], and then three months later they got pregnant with me."
In the blog that the three girls created to document their journey, Rosenthal shares how growing up with a sister with developmental disorders affected her. Although she was the younger sibling, she felt the traditional role of the older sibling thrust upon her. She always wanted to be the person whom her sister could look up to and needed to be the perfect child for her parents.
Throughout her life, Rosenthal was wary to open up to others about her unique family dynamic. But in the summer of 2011, a friendship was fostered at Brandeis University when Rosenthal met her future travelling partners and best friends, Frederick and Nuchtern. They were all part of a program called Impact Boston, a high school summer program focused on social justice and community service. Rosenthal soon discovered that Nuchtern, too, was a sib; her older brother has Asperger's Syndrome.
Planning for Sibs' Journey began months in advance and proved to be a huge endeavor. The key component was finding a diverse range of sibs to interview. "We used a lot of Facebook," said Rosenthal. "We contacted sib shops [which provide peer support and recreational activities for sibs] and sib leadership networks and we got a lot of resources from them. We posted in a lot of listservs and contacted Autism Speaks [an autism advocacy organization] and specific camps ... it was really cool because people passed our name around."
With the $4,000 scholarship in their pockets, the three girls took on the issue of trying to capture the experiences of siblings of people with developmental disorders. "We noticed ... that there is not a lot of information out there about full family experiences," Rosenthal said. "There are workshops and books and services for parents of people with disabilities, but there really isn't anything for siblings." Rosenthal and her friends wanted to change that.
As the interviews progressed, the trio developed a system. Nuchtern and Rosenthal would tell their stories, which, Rosenthal admits, was difficult for her initially. "At first, I struggled to explain my sister," she said, "but as the summer progressed, I got better at it."
Although Frederick is not have a devlopmentally challenged relative, she is an important ally to the cause, adding her own unique skills to the team. Frederick was what Rosenthal calls "the technology maven," promoting the blog and also "[keeping] everything in the right place, mentally," Rosenthal said.
Although the girls got some great feedback, not all the interviews were as rewarding as they had hoped. "It would take a while until we had a really good interview," Rosenthal said. "Some of the interviews we did on the east coast didn't go so well, either because they were really upsetting or they weren't as helpful as we wanted them to be or really repetitive."
Going forward, they hope to take the information they've gathered and apply it to help families and professionals. "We're looking to provide resources to health professionals, so when, for example, a child of two gets a diagnosis of autism, the whole family can be involved in a conversation so the sibling really knows what's ahead of them," she said.
The trio is also in the works of trying to secure funding for a book co-written by the three of them about their experiences.
On the whole, Sibs' Journey was just that: a journey. There were points in the trip when the girls questioned why they were bothering.
"We'd be driving around, really tired, [thinking] 'What's the point?'" Rosenthal said. "But then, an hour later, we would have a really amazing interview. We'd realize that we get to listen to people's stories all day long. This is why we're here."