News and Knowledge

When someone says “summer road trip,” it’s likely you don’t imagine spending two months traveling the country talking to the siblings of people with disabilities, to find out what it felt like to grow up in those families, lessons learned, and what they wanted others to know.

But that’s exactly the road trip that three college women set out on in the summer of 2013, talking to more than 80 people who ranged in age between 4 and 84, including many whose siblings have autism.

Those three women are Claire Nuchtern, 21, a senior at Princeton; Ellie Rosenthal, 20, a

junior at Brandeis University; and Renee Frederick, 20, a junior at the University of Texas. Nuchtern is the younger sister of Adam, who has Asperger Syndrome, and Rosenthal’s oldersister is on the autism spectrum and has other disabilities. Nuchtern and Frederick, who does not have a sibling with special needs, are high school friends; they met Rosenthal at summer camp.

The trip, which was funded through Princeton’s Martin Dale Summer Award, has blossomed into Sibs’ Journey, a movement to provide support for siblings ages 18-30.

In addition to their summer trip, the three women created the Sibs’ Journey Web site and organized a conference for young adult siblings, which took place in June at Brandeis University. They are considering next steps, including organizing additional conferences, working with the Sibling Leadership Network, and setting up a speaker’s bureau for siblings so they can share their experience and knowledge.

The Journey

They found their interviewees mostly through personal networks and social media as well as through other interviewees. As they traveled, they posted videos of the interviews along with

their reflections on a blog. “From reader feedback, we know the posts have been very meaningful and helpful to people,” notes Rosenthal. She says they hope to continue the interviews.

Nuchtern says she was encouraged when the people they interviewed discussed how their relationship with their sibling had changed as they had gotten older. “Especially when you’re young,” she says, “it is easy to feel like your relationships are static and so it was exciting to ponder all of the possible ways my relationship with my brother could develop over our lifetime.

“The most sobering moments, for me, were when sibs admitted to us that they had never shared their story with anyone before our interview. Thinking about all of the sibs out there who have not had the chance to confide in others about their experiences motivates the work that we do as an organization.”

In the course of the interviews, Rosenthal says, siblings told them what they wished their parents had done for them. “Often times, they wish they had been more informed about their sibling’s disability, more knowledgeable about family decisions and planning, and included in more conversations about their sibling. Though parents usually try to protect their siblings from these difficult conversations, they make the world of difference to the sibling in terms of understanding their family unit and their relationship with members of the family.”

“One key area that siblings and their parents must navigate is how involved the sibling should be in the care of their sibling with a disability,” says Nuchtern. “That takes honest dialogue and conversation about the possible roles a sibling can play. My parents and I have worked on having these discussions to allow for the best possible outcomes for both me and my brother.”

Rosenthal also noticed how many siblings “told us that they wish their parents, or someone, had told them how hard it was going to be. Many sibs told us that they didn’t want the frosting-covered cake story that theirs is a perfect family. They wanted their parents to give them the reality that was their household.”

The Conference

At the June conference, medical and legal professionals spoke about sibling research and special needs trust fund options. Leaders of disability-recreational networks, like the ARC, and leaders and members of the Sibling Leadership Network spoke about policy and advocacy work.

Twenty-five young adults participated, resulting, says Nuchtern, in the creation of a “community network of sibs who now have the resources and tools they will need to take care of their siblings later in life. We focused on young adults because we have found that this population receives the least amount of informational and emotional support,” she explains.

By the end of the weekend, Frederick says, participants decided to set up a Facebook group so they could all keep in touch. Participants also expressed how valuable it was to reflect, learn, and grow in the company of other sibs. That feedback validated the need Frederick, Nuchtern, and Rosenthal heard in their interviews for a space where siblings could connect and access important resources and information.

Sibling to Sibling

Nuchtern and Rosenthal hope they can make the sibling journey a bit smoother for those who follow them. Rosenthal shares her “wish list” of what she would have wanted to hear when she was younger and still living at home. “I wish someone had told me that it is okay to be upset and angry about what happened at my house. I wish someone had told me I didn’t always have to ‘make up’ for my sister in grades and extracurricular activities. I wish someone had told me that, somehow, they understood what I was going through.

“Over the course of our numerous interviews, we learned that many siblings in their young years often end up acting as the ‘traditional’ older siblings in their households, taking care of their sibling with a disability and being the responsible one. I would encourage them to find somebody that they feel comfortable with – a teacher, a babysitter, or a friend – who can take care of them sometimes because they do an awful lot of taking care of themselves. I highly recommend joining a local SibShop, an extension of the Sibling Support Project, that brings together sibs for fun outings and meetings.”

Nuchtern found that making the transition to college was especially complex. “My biggest struggle was not knowing how to balance wanting to know what was happening with my brother with not wanting to be overwhelmed by our family dynamic.” Being intentional about reaching out to her brother to see how he’s doing has eased that struggle and improved her relationship with him, she says.

She advises others headed to college to recognize what a major change the transition is. “The best thing you can do is be open and honest with your family about how you are feeling. It’s also a great time to potentially develop new habits and traditions for staying in touch with your sibling.”

Supporting Friends Who Are Siblings

Friends can be a major source of support for siblings, Frederick says. She encourages friends to ask questions: “Sibs are not always going to want to share how their feeling or details of the situation, but even just asking how their sibling and family are doing shows them that you care.”

In fact, listening goes a lot further than any advice a friend can offer. “I try not to offer too much advice because, despite the amount of time I have spent around sibs, I haven’t lived that experience. Remind them that they can come to you no matter what and that you will hold no judgment because that’s what friends do for each other.”

Frederick reflects that the trip she took with her friends made her aware of the power siblings have to advocate for their sisters and brothers. “They understand better than almost anyone else – with the exception of the individuals themselves and often their parents – what supports and resources are needed. They care deeply about their brothers and sisters and that results in deep compassion, which is a powerful tool for creating advocates.

“I spent a lot of time in high school with people with disabilities, and I rarely thought about their siblings as individuals or as a community. If I had never thought about sibs despite my deep connection to the disability community, there must be so many other communities and groups of people out there who are not given the space to have a powerful voice. The summer trip was a reminder to me that everyone deserves to be heard and that it is important for people to feel empowered enough to make their voices heard.”