A very special summer road trip

“I spent the majority of my life hiding the fact that I am a sib.”— Ellie, from the Bay Area, student at Brandeis University, older sister with Austism Spectrum Disorder and other conditions

“Being the “normal” child comes with an invisible and pervasive weight that many fail to recognize.” -Claire from Houston TX, student at Princeton, older brother with Asperger’s Syndrome

“Through the two of them, I discovered a whole new perspective of disability.”–Renee, from Houston, TX, student at The University of Texas at Austin

Summer is the certainly the best time of year for a road trip, but for these three young women, who recently completed a seven-week 10,000 mile cross-country driving trip while interviewing 75 siblings of individuals with dfferent types of developmental disabilities along the way, the journey was about much more than the destination.The three “SibsJourney” students met while they were participating in a BBYO/Brandeis high school community-service oriented summer camp in 2011.

Starting in Texas, the trio drove the “sibmobile” in a gignatic loop of America, first heading east, then north, and then west. Along the way, they tweeted and blogged, racking up 12,452 hits.I have been following along their odyssey much of the way, connected to Claire, through a friend of my daughter from their Israel gap-year together.

They video-taped interviews with a diverse group of siblings in terms of age, diagnosis of the sibling, and how having a sibling with a disability has impacted his or her life. Overall, they found that many of the siblings they interviewed had mixed feelings about their brother or sister with a developmental disability.

As Renee posted on June 19, ” Many people have had a very positive relationship with their sibling. It is important to recognize that although someone may have a positive relationship with their sibling, it does not mean that every memory is a positive one.”

I've pasted in a sampling of two of their posts from their journey, and I encourage you to take the time to read all of the posts and watch the video segments on their website:

“The morning we left Atlanta, we got to speak with a young woman who is currently doing Autism research with Emory University. In addition to having an academic interest in Autism, she has a younger sister who is on the spectrum. She was sweet, intelligent, and compassionate and her story provided us with some new perspectives.

I’ve noticed that so many sibs are more compassionate and understanding than the average individual. Their siblings have taught them to appreciate every person’s abilities. Many sibs have also told us they’ve been called “old souls” in the past and often feel more mature than others their age.”

And after an interview with a 18-year-old sibling in New Jersey:

“Natalie has a brother with autism. She has definitely struggled to come to terms with her family dynamic, often preferring to be out of the house except for “showering and sleep, that’s it”. She told us how despite her physical distance from her brother, he was constantly on her mind as she struggled with feelings of guilt about the opportunities and experiences that she was getting to have that would likely never be a reality for her brother.”

These three remarkable young woman have together created a richly-textured peek into the the minds of siblings with special needs across the United States, and their project will continue to inform and educate long after their summer tans have faded.