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First Stage: Complete

Though it's the end of our summer journey, it's not the end of Sibs' Journey. We cannot even begin to express how grateful we are for the support of all our friends, family, readers, and other sibs.

We believe that we have created a strong foundation for which we can promote change for sibs and their families. We're bouncing around some ideas regarding how to move this project forward. One of the things we enjoyed most about our summer was connecting with people. It was nice to share stories with sibs and sib supporters, but we recognize that not everyone knows someone to connect with. We are thinking about different ways that we can connect people within our newly expanded network of sibs. We are also looking into options regarding grants and funding so that we can continue moving Sibs' Journey forward.

We would genuinely appreciate hearing your feedback, either as a reader or an interviewee. There is a new Feedback page where you can answer some questions for us regarding the blog and the interviews we conducted. If you have any media contacts we'd love to be connected with them too (especially since our dream is to be on Ellen!) so that we can continue spreading awareness about our project and the sib experience.

Finally, we'll be synthesizing all of the feedback y'all give us on next steps to create an indiegogo funding page. Look out for that within the week.

Until next time,

Claire, Ellie, and Renee

Root for the Underdog

While in Boston, we spent a morning in the South End talking with Matthew, a psychologist with two siblings with special needs and a typical sister. One of his brothers, Scotty, was born with very severe medical and physical disabilities and tragically passed away when we was only two. His next brother, Steven, was born with Down's Syndrome. Because his hometown of Kansas City was pretty lacking in services, Matthew's parents committed themselves to creating those services for families like their own. Over the course of Steven's life, his parents created a Down's Syndrome clinic in order to make it easier for families to see all their service providers in the same location, formed the Down's Syndrome Guild of Kansas City, started a program with the Kansas City Chiefs called First Down for Down's Syndrome, and established a residential and work program for adults with developmental disabilities -- what a family! It's possible though that as a result of all of this enormous time and effort spent on improving the lives of those with disabilities, Matthew was able to "fall through the cracks a bit" in his own family.

Not only did Steven's disability lead the family down this path of public service but it also had an enormous effect on Matthew's father's personality. He described his father pre-Steven as super-macho, no emotions, workaholic who could even be a bit scary in his parenting. However, through interacting with Steven and realizing that his son didn't have a "mean or spiteful bone in his body". Matthew believes that his dad essentially looked at himself and said -- how can you possibly be mad at this boy? and through that began to transform entirely. He told us that now he's often amused at what his dad likes to do -- being a doscent at a local art museum, going to wine tastings, traveling, etc. He credits all of this new flexibility to Steven and his unfailingly sweet attitude.

Because his family has become such celebrities in the world of disability services in Kansas, several former classmates have reached out to Matthew upon having children with special needs. They ask him how to best ensure that their "sib" child has a meaningful and close relationship with their sibling with a disability. Matthew told us that he tells them how important he thinks it was that shortly after Steven's diagnosis, Matthew met an older boy with Down's Syndrome that was extremely high functioning. This experience allowed Matthew to think about his brother in terms of all of the possibilities that could lie ahead versus his future limitations.

Beyond dolling out advice, Matthew also has spent his life dedicated to helping others. He notes that as a teenager, he spent his time volunteering and participating in community service initiatives. In college, he continued this by participating in both Best Buddies and Big Brother Big Sisters. In his career, he chooses to mostly see patients from low-income backgrounds as he continues to dedicate himself to "rooting for the underdog". As someone who has also immersed themselves in service since high school, I resonated so much with this portion of the interview and was happy to meet another sib who shared my interests.

Claire

Meet Matthew

During our stay in Boston, we spoke with a young man who had just finished his last days of fourth grade. Matthew, whose 6-year-old brother has epilepsy, told us all about his life as an older sibling to his brother. He spoke with perspective, choosing his words wisely and carefully to depict his memories and emotions accurately. Like many of the other younger interviewees that we have met with, Matthew was yet another “old soul,” who appeared much more mature than many of the men that I have met in college. In the clip below, he describes his relationship with his younger brother who is minimally verbal and suffers from many seizures a week.

Matthew also illustrated for us how having a brother like his affects the entire family and its evolving dynamic. We haven’t spoken with too many children who have been able to so easily put into words the way their sibling changes the “typical” family experience. Below, he describes how strenuous an average day can be.

Like many other sibs along the road, he delves himself into his schoolwork. “I dread the last day [of school]” he told us with a sincere smile. He also shared that one of the reasons he loves school so much is because he likes “getting away from the hecticisty that is [his] house.” Keep in mind, Matthew has not even started middle school yet.

In this last clip, Matthew speaks about how his younger brother has truly affected his life.

Thanks for talking with us, Matthew!

Ellie

Identity, Identity

For anyone who was in BBYO, the title of this post will immediately remind them of a popular cheer from our youth group days of (not that) old. For those of you who haven't heard of BBYO or were not a member, I'll fill you in on the cheer. It goes like this: Identity, identity

Who am I?  A BBG

I am one, though only one

There's so much I can do!

Though a bit corny, like all cheers are, this cheer immediately struck  me as a good background for my post about BBYO, or B'nai Brith Youth Organization, a Jewish youth group that saw me through the 4 years of high school. BBYO, for me, was all about examining my identity and, ultimately, finding my voice. While this applied to many aspects of my personality, it was no better exemplified by how I felt about my role as a sib. You see, before BBYO, before the cheers and the chapters, my voice when it came to being a sib was extremely shaky. Talking about my family was complicated - when I was a 5th grader, most people didn't know what autism was so it seemed useless or just too tiring to try to explain what it meant for my brother to have Asperger's. So, a lot of the times, I just avoided talking about it, telling myself that it was only our business and nobody elses.

That worked right about until I joined BBYO. The reason why it suddenly wasn't enough to just say "yeah I have a brother, he's older than me" and leave it at that is that BBYO is all about developing deep, long-lasting connections with your peers and one of the best ways to build connection (especially for me) is to be vulnerable with people and share my story. So, one night, my chapter was having a "sisterhood" project modeled after the website Postsecret. If you've never been, definitely check it out, but essentially it's a project where people mail in postcards to an address with their biggest secret displayed on the card. This act of anonymous disclosure often allows people to make peace with their secret or at least feel less trapped by it. When we started looking at some of the postcards displayed online, one of my friends started talking about a secret that really resonated with her since she was a sibling of someone with special needs. That night, she opened up in a way that I had never done before. Since this friend also happened to be my neighbor, when she drove me home later that night, something inside me decided to tell her the truth, the real story of my brother and my family. It's a night I'll never forget simply because it was the first time where I really let it all hang out. I told the funny stories, the more stressful stories, and just all of the emotions that I had locked inside me for so long. Time and time again, she would burst out with "oh my gosh that's my life too!" or "yes oh my gosh that's so right!". Sitting in that maroon jeep, I finally felt like there was someone who could possibly get what I was going through. And so, that was my first sibs moment, thanks to BBYO.

Later that year, I was elected to the regional board of our BBYO region in the position of Vice President of Judaism and Community Service, or Shlicha. Each Shlicha gets to choose a cause or issue that they want the region to "stand up for". After much deliberation, we decided that our cause would be the inclusion of people with special needs into BBYO. While BBYO had never barred people with special needs from participating, they also never made an intentional effort to advertise that they were accepting. As a sib, this cause was clearly extremely relevant to my life and I threw myself head first into the initiative. My friend and I gave a speech about the sibling experience at our convention that year and I organized a panel of parents of kids with special needs in order to raise awareness about their experiences. At our biggest convention of the year, I helped bring in the stars of the documentary Wretches and Jabberers, a film about two adult men with autism who travel the world spreading their story. Again and again, BBYO gave me the chance to claim this extremely important part of my identity.

Finally, BBYO (via Impact:Boston) is how I found the two wonderful and strong women who make up the rest of the Sibs' Journey team. I am forever grateful to this organization for the support it has given me in navigating my sib story. Going back to the cheer, even though I am only one sib, I am so motivated to do as much as I can for this sibling community. As we travel the country and near our halfway point of the trip, it's becoming clearer and clearer to me that this will not be a one summer endeavor. Sibs everywhere are raising their voices and asking to be respected and included. It would be remiss of me not to heed their call.

Claire

A Story Revisited

During some of our long car rides thus far on this trip we have had numerous debriefing and brainstorming conversations about this project. One thing that we speak of often is how honest the sibs we speak with truly are. We recognize that our final product and conclusions may be skewed due to the fact that many of those that we interview have reached out to us, and therefore we lack some of the stories where sibs don't want to discuss their siblings or their experiences growing up. We wonder how biased our results may be due to this dearth of perspectives. That said, during our stay in New Jersey we spoke with one of the most honest sibs we have met with so far. We spoke with a college student who told us about her 17-year-old brother. When he was a young child, her brother had many seizures and tried many medications. By the time he was a toddler, it was clear that he had somehow been affected in terms of his mental development. She told us he has a lot of language problems, is nonverbal, and moved to a live-in facility when he was 16, where he is now. She told us that she currently has no relationship with her brother. She avoids talking to him and speaking about him to her friends and family. “I do not talk about him at all,” she told us. “I never brought it up with people.”

She was quite candid about her feelings towards her brother: “I don’t feel much affection for him. This is always really hard to explain to my friends.” Though she was one of the first people we've interviewed who doesn't currently feel much extensive affection toward their sibling, we have certainly spoken with some adults who were initially less affectionate and caring toward their sibling in childhood than they are now.

She also shared with us a possible factor in her reluctance to form a relationship with her brother. “I was a huge bookworm growing up.. a lot of times during the family outings I had my head in a book anyway which probably would have affected sibling relationships no matter what.” Though, admittedly, she would have “liked to have had a sibling at some point.” Another factor in her reluctance was "seeing how much work my parents had to do…I resented him a lot for that.” She expressed deep anger at her brother for taking away so much attention, time, and energy from her parents, something we have seen come up in many interviews even when we weren't expecting it. Though she illustrated anger towards her parents based on their “irrepressibly hopeful” attitudes, she does not talk with her parents about her brother and her parents have assured her that she will not have to bear responsibility for him later in life.

She and several other women we've interviewed have considered the possibility that one of their children will have special needs. Unlike her though, most of these women, have felt as if being a sib would be good preparation for that. She was quite honest about her fears: “This sounds horrible but … if I have a kid, I don’t ever want to have to be put in a position like the one my mom is [in].  I don’t care if it’s the day they're born [and something's different] or two years old. I want to be able to drop that that kid and run.”

She talked about her confusion as to why her parents have donated so much time to this cause that she can’t seem to comprehend. “I can’t quite justify the amount of attention my mother gave to my brother and all of the things that she did for him because in a way that has made me less compassionate.”

“After a while, you realize that they won’t get to the same place, so, why exactly are you bothering with everything?” “They’re not quite the same as [normal people].” Many people we have spoken with have shared with us that they believe that they are more compassionate people, especially in the special needs world, because they grew up with a sibling with special needs.  However, she has proven to be our first exception. “I see them as almost less than humans,” she told us. “In some ways, it has made me much less compassionate,”  because of all of the anger that she has towards her own brother.

Though the three of us found her interview to be quite jarring, we learned a lot from her interview and are very grateful that she was so incredibly open and honest with us. She was the first to share such negative emotions with us. Her feelings may seem like a rare occurrence, but it's possible there are many other people feeling the same way are just too afraid to share. For this reason, we appreciate her bravery and honesty.

Though I realize this post is getting irregularly long, I feel the need to talk about what happened after we sent this student a draft of the post we were going to put up. She responded with beautiful insight and truthfulness. As it turns out, our conversation with her prompted a conversation that she then had with her mom. She clarified that her mom reminded her that, "my friendships and close relationships are basically entirely based around verbal communication. If my brother were mentally capable but didn't take much interest in abstract topics, it's unlikely that we'd have a close relationship anyway." Reading this from her was very interesting, as it had not really come up in our interview at all.

She was also incredibly brave in telling us that she had blocked out much of her memories about her brother because her experiences were unbelievably difficult and hard to fathom.

"One reason that my brother was in put in a facility a year ago is because his behavior was pretty bad, and it was getting to a point where it was hard to control. He was loud in public (going to restaurants or other public places was not possible), and could turn violent and/or destructive. My mom also reminded me last night that (through hair-pulling), I was his first "victim", which probably didn't help me start out friendly towards him when growing up and definitely contributed to me avoiding him. In fact, the few times I dealt with him in high school, I was usually being used as a "trump card" -- someone who didn't see him very much and whose authority and physical strength could be used to force him to calm down and to go upstairs to bed when nothing else worked. I probably didn't bring this up when we talked because I had blocked most of this out, and it took talking with my mom to get me to remember these things."

None of this had come up in our interview. As someone who also went through a lot of memory blockage, reading her words was not only comforting that I am not the only one but also a testament to the true turmoil that she suffered during childhood. From what she responded to us, her feelings towards her childhood are not only justified but incredibly vital to this study.

Her last response to our post verbalized a trend we have seen so many times during this first half of the trip and will no doubt come up again.

"I am aware that my lack of affection for my brother is very much something I could develop only because I had the privilege of not having to help take care of him. My parents are well-off enough that we could use respite workers." She also told us that her mother is part of the medical field and that helped her to "navigate the world she was thrown into and find people who were really helpful. All of these factors meant that I didn't really have to help at all. My brother became a sign of what I couldn't do (go out often with my parents, have a peaceful dinner) but not what I had to do (spend time looking after him), so I wasn't ever forced into proximity with him. Apparently he does have many moments of sweetness, but as you can only take the good with the bad, I was sheltered from both."

The dual experiences of learning about this college student have been incredibly insightful to all of us. We are happy that we were able to spark a conversation within the family and also grateful that she and her mother were both so open with us.

 Ellie (with help from Renee)

"Take the time to look"

After a way long day of traveling from Princeton to Boston, we pulled up at a classic brick Boston building with a sign hanging that read Gateway Arts. Gateway Arts is a nationally and internationally known arts-based vocational rehabilitation service with professional studios, a gallery and a retail store. We were here to interview one of its employees, development associate Hannah Hoffman, an older sib to her brother Ben.

Here's Hannah introducing herself to us:

For a short description of Ben's history:

Very recently, Hannah made the decision to invest time in intentionally cultivating her relationship with her brother. Listen to her describe how her relationship has evolved over the years with Ben:

And even though we already pretty much knew the answer to this question given her workplace, we went ahead and asked Hannah if having a sibling had influenced her academically or professionally:

Like most other sibs we've spoken with, Hannah had her worries for the future. It was clear from her answer both how deeply she cares for her brother and how much respect she has for how her parents have supported him throughout his life.

We also wanted to dive in and ask her a few questions about her other "hat" that she often wears, an active member and board member of the Massachusetts Sibling Support Network. Listen in for her description of this amazing sib-related nonprofit.

I want to close with Hannah's description of what she finds valuable about having a sibling like Ben. Her answer was a reminder to me to always push myself past my first impression of people in order to find the little things about them that are remarkable or even just relatable.

 

Thanks for hanging out with us Hannah!

P.S. If you'd like to learn more about Gateway Arts or MSSN, check out their web sites below:

http://gatewayarts.org  

www.masiblingsupport.org

Claire

Bearing Witness

Yesterday, we had the exciting opportunity to speak to the participants at Impact: Boston, the summer program where we all met. The program's focus is service learning and social justice. I think I speak for all three of us when I say that this program is an important part of our journey to becoming self proclaimed activists, so we were thrilled to be back. We told the teens about our project, the stories we've heard, the lessons we've learned, and the steps we took to make this journey a reality. It was really nice to be part of that community again and to show the teens they're really not too young to advocate for what they believe in.

---

There is a beautiful story in Judaism about the creation of the world (it's relevant, I promise).

Before creation, God’s presence filled the universe. When God decided to bring the world into being, he needed to make room for creation. He drew in his breath, contracting himself and creating darkness. When God said, “Let there be light” (Gen. 1:3), the light filled the darkness and ten holy vessels came forth, each filled with the divine light. Had the vessels arrived intact, the world would have been perfect, but they were too fragile to contain such a powerful and divine light. The vessels shattered and shards of divine light were scattered throughout this world. Mankind was created to gather the shards, no matter where they were hidden, and restore the vessels, thus repairing the world and completing tikkun olam*.

This story isn't just for Jews. As human beings, we have a responsibility to repair the world – to collect these shards of light, and piece the world back together.

---

After our presentation, Shimshon, the program's director, spoke about this idea that through our project, we are "bearing witness" (a phrase he heard from someone at Medicine Wheel in Boston). We are bearing witness by connecting with strangers and friends alike, and hearing their stories. In our interviews, we ask a few guiding questions and allow people to ask us questions as well, but we mostly listen. Some have told their story many times before, but for others, we are the first people they've really opened up to. By providing this safe space and community of listeners, we are allowing people to heal.

This idea of tikkun olam does not just apply to direct service, to giving and receiving. We all have a story. A collection of small moments, moments of impact, that when pieced together, define who you are. Each of our stories are the shards of light in this universe, and when we take the time to connect with others, whether they are like ourselves or far from it, we are collecting the shards needed to restore unity in this world. The simple act of listening - of bearing witness - creates a space for healing and a space for gathering those shards of light.

*tikkun olam is a phrase used to mean "repairing the world"

Renee

A First-timer

Our last night in D.C. we interviewed another recent college graduate who spoke incredibly eloquently about his eldest sister who is 25 and has severe autism. Interestingly, he confided in us that this interview and conversation was the first time he had ever spoken about his sister. For him, and for us, it seemed that our long conversation was a catharsis amid his complicated, busy, exciting life.

Aly was an incredible orator and told his story with eloquence and thoughtfulness. He told us how his family had moved from Pakistan to the United States specifically for the support they could receive for his sister. Unfortunately, they weren’t acquiring the same aide in Pakistan.

Aly also spoke with us about some of the raw experiences that went along with being his sister’s brother.

He also spoke about compartmentalizing his life, a trait we have seen in many other sibs.

One of the most important things we learned from speaking with Aly was how imperative communication is for sibs.

Even after we turned off the camera we ended up talking to him about being a sib, about emotions, about life for well over an hour. He told us how grateful he was to finally be able to talk his story and he was genuinely interested in hearing ours as well. It is one talent to comprehend and understand someone’s experiences, it is another one to empathize with them. To Aly, we are forever grateful for your charisma, your bravery, your stories, and your friendship.

~Ellie

Our New Subtitle: Broadening the Narrative

This morning, as Ellie, Renee, and I wandered through the beautiful woods bordering Chapel Hill, North Carolina, I got to thinking about how we had frequently discussed how it would be nice to have a subtitle for our project to complement Sibs' Journey. As I walked on, I started thinking about how very important it was to me to make it clear to any sib that stumbled upon our blog that no matter how raw their story was, if they felt comfortable sharing it, we wanted to hear it. Most of the motivation behind this project came from my frustration that none of the narratives that I had heard about being a sibling of someone with special needs resonated with me. Because of that, I often felt like my feelings about my family weren't valid and therefore weren't okay to share. Throughout this project, one of my ultimate goals is to broaden that narrative; to listen to and share the stories of sibs who defy and redefine the cliches about what it's like to be a sib while simultaneously pushing our thinking around how we view our siblings with disabilities. So, at least for now, we're taking a plunge with this new subtitle, Sibs Journey: Broadening the Narrative. Let us know your thoughts in the comments!

Claire

My first interview: Doubts and Shifts

Planning this project has been an overall and overwhelmingly positive experience for me. I have been lauded and applauded by parents, teachers, and friends for spending the summer driving across the country on this journey, with this mission. And yet, I still have experienced crystal clear moments of doubts and second-guessing. I want to talk about one of those moments today. It was the night before my first "sibs" interview ever. I was going to be interviewing a Princeton senior the next day who had an older brother with Down Syndrome as well as additional medical complications. The reason why I found myself so antsy about that interview is that I was struck with a fear that we wouldn't have so much in common, that our tales of being "sibs" would be cacophonous instead of harmonizing. While my brother struggled mostly with social skills, her brother had chronic medical concerns and also a diminished mental capacity. I obviously knew that every sib I talked to would be different and have traveled a different trail (drawing from Ellie's metaphor), but what if there was simply no common ground, no middle to our Venn Diagram.

Within minutes of talking, I was so ecstatic to be very much proved wrong. While our stories differed in their contexts, at the heart of them was a strikingly similar picture of what being a sib looks like, how it affects the way we think and feel in a myriad of daily situations. I was struck by our similarities and I think I even took that to mean that maybe there would be such a coherent narrative that we would just hear the same things again and again this summer. But even after reflecting on the differences and similarities of Ellie and I's experiences, my view on this has shifted yet again.

Here's what I know now: I know the stories we hear will be widely varied and even at times at odds with one another. The point of this project is not to produce blog post after blog post of the same sib profile; on the contrary, it is to push people to see all of the different ways that having a sibling with special needs can shape and mold who you are and how you feel about your situation. So, if you're out there and a sib, we want to talk to you; no matter how much your tale reminds us of our own.

Claire

Mountains

As it is summer vacation, I have been trying to read as much as I can before I head back to the textbooks. I am currently in the middle of Huston Smith’s memoir, Tales of Wonder, in which he depicts his life and how he came to be the connoisseur and author of The World’s Religions. I read The World’s Religions in a senior seminar I took in high school where, through Huston Smith and my incredible religions teacher, we learned that “we are all climbing up the same mountain, just on different paths.” This notion has been on my mind a lot lately, undoubtedly because of my current book of choice, but also because of Sibs’ Journey.

While I continued to dissect this concept in relation to these two seemingly unrelated topics, I originally believed that, in this case, maybe we’re not all climbing up the same mountain. Maybe some of us are climbing a mountain where we feel unrealistically responsible for our siblings, maybe some of us are trekking up a mountain where sometimes it seems that our siblings haven’t even begun their ascent. Still others may be hiking up a terrain that is filled with anger, regret, confusion, and helplessness, while others feel that they are paving a new path up their own hill and the trip itself is making them a better person. I sat with this idea for a while. My thoughts were guided by a lecture that Claire, Renee, and I all listened to at summer camp in 2011 given by a woman who worked at a Massachusetts ARC (Association for Retarded Children). She told us that, in response to my question about siblings of residents who have autism, 50% of siblings are over-achievers, and 50% of siblings detest their siblings. At this point, Claire looked over at me, rolled her eyes, and whispered, “Ellie, you’re both!” Perhaps there are a multitude of strands that braid together in creating one's route upward.

I shall continue reading Huston Smith’s brilliant memoir, and, just as he did while I was in high school, he will continue to teach me not only about the world’s religions, but also about life, relationships, and challenges. I can now see that we, the siblings, are definitely climbing up the same mountain, however wide that mass of land may be. In bare emotion, we are all striving to see how our siblings fit into our lives, whether that be monetarily, emotionally, or in terms of relationships, with them and others. Whatever the trail, we are all  scaling up a mountain influenced by a combination of a myriad of factors and experiences.

I am wholeheartedly excited to begin this study of the many different tracks that lead up this mountain of being a sib, and I am even more enthralled to see how they intertwine together and around each other.

Best, and thank you everyone for your continued support of this project.

Ellie

Making Connections

One of the most exciting parts of planning this trip has been the serendipitous conversations that I've had that have led to me finding out about an increasingly wide network of siblings. As an example, I was at a lunch meeting yesterday with a few adults from the Princeton community about potentially collaborating on a project with them. Towards the end of the conversation, one of the adults asked me what I would be doing this summer which led me to give my short spiel about Sibs' Journey. After I explained the project, she immediately told me about a Princeton professor/ neuroscience wizard that she said I absolutely had to talk to. His name is Sam Wang and his research interests include the neuroscience of autistic individuals as well as generally that of family members of people with mood disorders, substance abuse issues or disorders including ASD. Check out this article about his recent study which proposes that having a family history of certain psychiatric conditions can help predict what your intellectual interests and passions might be. Fascinating stuff!

Sibslove,

Claire

Getting Started

June 11th marks the day we have been planning for for months. On June 11th, we, Claire, Renee, and Ellie, will begin our tour of the United States through the eyes of siblings of those with developmental disabilities and special needs. Over the course of the summer, we plan to interview and speak with as many siblings as possible as well as talk to families and non-profits around the country about what resources are available to ‘sibs’ and why they, too, need support systems. We will be taking notes and blogging throughout the whole summer.* Follow us around the United States! *All identifying personal information will be kept confidential unless otherwise agreed to by written consent of interviewee.