An article, in the meantime...

Hello Sibs' Journey followers,

As the three of us navigate the world post-college graduation, we thought we'd share with you an article Ellie just published through the Lurie Institute for Disability Policy, where she works as a Research Associate. Ellie brought the subject of siblings to the Lurie Institute and this is the first paper to come forth from that addition to the research done from one of our favorite spots in Massachusetts, Waltham. She and her team studied material hardships and characteristics of caregiving sibs.

Here is a link: http://www.aaiddjournals.org/doi/abs/10.1352/1934-9556-54.5.332

If you have trouble accessing it, please shoot us an email and we'll send you a copy.

Check it out!

Siblove,

The Team

"Writing Probably Saved Me"

I recently had the pleasure of interviewing Darcy Leech, author of the just released book From My Mother which details her experiences as both a sibling and a daughter of individuals with rare genetic diseases. What struck me most about Darcy was the way that she was able to use writing throughout her life as a way to process and cope with the often complex emotions that come with being a sib. Below are excerpts from my interview with Darcy. Check out the interview below and check out her book at: http://www.amazon.com/dp/1632132249/. 

 

Why do you think writing has been such an outlet for you as a sib? 

Writing helped me heal from losing my brother when I was 16. I had tons of emotions swirling around, and my life changed dramatically when I no longer had to lift my brother into bed, help unload him off the bus, dress him or change diapers. I had a lot more free time and perhaps a less clear purpose. I wrote to understand myself, to heal, and to process the paradigm shift it was to go from a sibling of someone with a disability to the only remaining child to two loving, but hurting parents. Writing is my outlet, my therapist, and hopefully the way I can make a positive impact on the world.

Who is your primary audience when you've thought about writing this book? Why do you want to write for this audience as opposed to other audiences? 

I wrote for the families affected by muscular dystrophy, anyone affected by a rare disease, spouses who are caretakers, siblings who grew up too fast, anyone who suffered loss, and anyone with a mother. I particularly hope that siblings of those with disabilities read this book. I would have been a better person if I read this book when I was 16. It can feel lonely to be in a family with a child with a disability because our home lives are so different. We have to grow up fast. We don't have as great a range of freedom or free time. I took everything seriously because I was raised to think my brother could pass away at any time. I spent tons of time playing my Game Boy in hospitals and less time at sports camps or Girl Scouts or other social opportunities that took more stability than my family had living amid medical crisis. Sometimes, my peers didn't understand me. I want to find the other siblings like that - young and old. We aren't alone, and good books allow us to connect to stories like ours. If you are a sibling, you'll love From My Mother. You'll relate, I promise. This will be an especially powerful book for any sibling who managed to 'dodge the bullet' in a family with genetic disease.

What sorts of emotions have come up for you as you've written the book? 

Oh, I cried often. Tears of pain, joy, gratitude, anger. I processed emotions I repressed around others. I let off steam that if I didn't would affect my closest relationships in moments of stress. I remembered my childhood, sorted through pictures, asked my father questions about things I was never told. It was cathartic. I'm not sure a therapist could have done as much processing with me as a book did. Writing probably saved me. Now that the book is complete and I can share with other families like mine, I feel this immense joy, as if I've found my calling in life and now know what I was born healthy from a mother with a terminal disease. I was born to share her story of strength. This book is mission driven for me. If I succeed in getting this book to the audience who need it, I share my mother's story of pain, loss and strength to help others with degenerative, genetic, chronic or terminal disease. It's a lonely road to walk, and in the modern era of social media and publishing, I'm uniquely positioned to help women like my mother know they are not alone. That's a gift I mean to give my best effort to. I care instantly for the people who find me on Facebook and tell me they are in a family with muscular dystrophy. I'm like them. I understand them. Some of their sons look like my brother. Some of the women have the same set in the jaw as my mother. Those are my people. I wrote for them and I want to share with them. I wholeheartedly believe From My Mother can make a difference for families like mine. Whatever emotions I had to battle to write - that end goal is worth it.

 

For more information about Darcy, check out her website at: http://darcyleech.com/

What happens when your sib gets married?

One of the questions we ask in every interview is: Did you know any other siblings of people with disabilities growing up? The most common response we get is no, but there’s always a caveat. Our typical interviewee will say: No, but I’m sure there must have been other sibs around but because so few people talk about their experience, you might never connect with people about your common experiences.

 

I interviewed Joan this morning who is a perfect example of this phenomenon. Joan and I knew each other throughout high school, served on the board of an organization together and yet we never once spoke about the fact that we were both sibs. It was only later on when Joan arrived at our summer conference for Sibs’ Journey did we ever first put the pieces together. I hope you enjoy reading her story, which we hope as always will push more siblings to feel comfortable naming and sharing their experiences so that they too can feel a part of this greater community. __________________________________________________________________

Joan has two brothers: one older brother who has dysgraphia and dyslexia and one younger brother who is typically developing. When I asked Joan what the challenges were growing up with a sibling with a disability, her answer surprised me. She told me that, “that’s the thing, there were no challenges growing up with Ted.” For Joan, she didn’t start to experience challenging emotions around her family situation until Ted got married this past year. Ted married Kate, who Joan describes as having disabilities that are more developmental and social than Ted’s as she has severe OCD as well as some other developmental pieces.

Having Kate join their family has been quite challenging for Joan, who describes herself as being very protective of her older brother Ted. She wants what’s best for Ted and fears him being taken advantage of by anyone while also recognizing that perhaps she might not be giving Ted enough credit.

The marriage worries Joan because it gets at one of her biggest fears: that someone might use or take advantage of Ted without caring for him in return. She acknowledges that she thinks that Kate really does make Ted happy but she worries that Kate’s needs as a result of her disability will come to dominate their lives. Kate frequently comes over to Joan’s house and asks to speak with Joan and Ted’s mom for guidance which bothers Joan because she worries already about her mom’s stress level and also feels protective of her mother’s emotional well-being.

These feelings are challenging for Joan to grapple with because she feels unable to share her true feelings with her older brother. When I asked her about whether she would consider bringing up her concerns to him, she responded that, “I don’t think it’s possible - I don’t feel like that’s specific to the fact that she has disabilities - even if he were typical - if your older brother marries someone you don’t like - you can’t really say anything about it.” What’s different in Joan’s case is that she’s grappling with how the marriage to Kate will impact her in terms of caretaking responsibilities. Joan spoke about how growing up, her parents always made it clear that she would have a role in checking in with Ted to make sure everything was okay. What shifted now is that Joan worries about her desire and ability to take care of not just Ted but also Kate.

I would be remiss if I didn’t mention how guilty Joan feels for these complex feelings. She, like many sibs, struggles to know what aspects of her brother and his wife’s needs stem from their disabilities versus their personalities. She repeatedly reminds herself that Kate can’t help the fact that she has these social and emotional challenges.

 

Joan’s story left me thinking. I’ve had the experience of people assuming that I would be more tolerant of individuals with disabilities almost automatically because of my brother and yet I’ve never felt particularly positively about my ableist biases. Joan seems similarly thrown by the range of emotions she’s feeling right now. At one point in our interview, she described how, “I would like to think that I would say that you have to treat people with disabilities the way you treat anyone else… but also this is my life.” Joan hopes to be a lawyer who defends individuals with disabilities and has shown time and time again her dedication to inclusion and disability rights… which makes it all the more challenging for her to process the feelings she’s going through now. I don’t have easy answers for Joan, or any other sibs that are experiencing a similar confluence of emotions. All I can do is applaud Joan’s honesty and willingness to reflect on her experience and be there for her as she continues on her journey.

 

Back at it

Hello Sibs’ Journey Followers!

It has been quite a long time since we posted about anything, let alone an interview, but today I would like to reintroduce you to the foundation of Sibs’ Journey: Broadening the Narrative. Renee, Claire, and I have reopened the interviewing process and have been scheduling phone interviews with sibs from all over the country for the next few weeks. It’s a little bit different than driving to each interview together, but we’re having a lot of fun hearing and recording more sib stories.        

Last week, I had the pleasure of speaking with the lovely, Julie. Julie is 32, lives near Boston, MA, and recently received her doctorate in Psychology. Interestingly enough, the fact that I’m a psychology student myself was the smallest of our similarities. But, before I let this be about me, here is Julie’s story:

Julie grew up with an older brother, Jason. Jason is three years older than she is and functioned typically until the age of 9. At 9 years old, Jason had his first seizure. Soon, he began having twenty to thirty seizures a day. At 13, he went through brain surgery, which resulted in lasting personality and cognitive changes that began taking place over the years after the surgery. This shift –shifting from a typically-developing 13-year-old boy to one with cognitive impairments – posed an interesting role dynamic in Julie’s life. Because her brother had been three years her senior, he had reveled in the role of acting as her older brother. However, once she continued to develop and thrive, while he did not, their relationship became strained. Jealousy became a key player once Julie learned how to drive, and then, moved out of the house. Julie told me how difficult this was because Jason remembers what it’s like to be normal, to exist in a typically-developing world. That’s one of the hardest parts, she says, because he knows what he’s missing.

Because of this change in roles, and because of the engrained other diverse factors relating to growing up with a sibling with disabilities, Julie and her brother haven’t always had a smooth relationship. Julie told me how hard it was for her to “surpass” him in life achievements, and how challenging it was to bring her friends over and risk having to explain her home life – his seizures, his special diet, his behavior – to them. When I asked Julie what she thought her role was in her family growing up, she told that she was the one who “kept things going.” She was the responsible, problem-free child who didn’t break any rules. She talked about her conscious effort not to be seen too much.

However, growing up in her household has truly shaped Julie, especially in her career choices. Julie is a clinical psychologist who focuses on health psychology. She hopes to develop her own practice that “will focus on treating those affected by illness/disability in some way.” In fact, Julie’s dissertation centered around siblings of individuals who suffer from epilepsy, so she’s well-versed in the sibling experience. Even though when I asked Julie about whether or not she had interacted with other siblings growing up, or if she knew about many sibling supports available to siblings now, she answered that sadly, she did not, it was wonderful to hear about her own journey into the sibling world through her experience and her interesting research. She told me that she is going into this kind of work because she wishes that she had had more support in her growing understand of her relationship with her brother. She comes from an incredibly deep place of understanding and I can only imagine how much empathy and affirmation she provides to those with whom she works. An analyst at heart, her final question that she told me she would like to ask any sib, given the opportunity, was: What would you tell your child/teenager self knowing what you know now? Any advice for your young self?

If any of this is sounding familiar, it should! Julie’s story is very similar to mine, especially in her complicated relationship with her brother and her academic and career pursuits.  In the small – but growing larger in size and in power – sib world, it is always wonderful to speak with someone who can understand your story from a deeply personal level, and for that, I am so grateful to have spoken with Julie.

Siblove,

Ellie

Reflections

“When we are listened to, it creates us, makes us unfold and expand.” – Dr. Karl August Menninger Words can not even begin to describe the amount of learning I did this summer. I learned about others, the world, myself, friendship, confidence – my list could go on and on. However, I want to hone in on a lesson I did not plan on learning. Though my therapist has been telling me this for a year now, I didn’t believe her until this summer; everyone’s story deserves validation. This summer, I was fortunate enough to listen to hundreds of stories. Over the course of seven weeks, I learned that even though I can’t prescribe medication or provide new housing options, I can listen. I can listen to what people say with attentiveness and intrigue – and that is enough. I never before thought that listening to stories could be so powerful. I know, for myself, having someone listen to my story allowed me to grow as a person, as a sister, as a daughter, as an orator. Through the difficult and rewarding task of listening and being listened to, I now tell a different story than the one I would have a year ago. I am so thankful and humbled that I was able to listen to so many incredible stories this summer – the easy ones and the hard ones. I began to grasp the concept that listening, in and of itself, is a catharsis and I am truly grateful for this lesson. I have unfolded and expanded, and I like to think that I also helped some others to do the same.

Ellie

***

After asking so many people to open up to us and share some of their deepest emotions and journeys, it would be unfair of me to refrain from doing the same. So here are my final reflections.

Before this trip began, I couldn't have been more excited. I knew from Ellie and Claire that sharing sibs stories would be an important thing to dedicate 7 weeks to, but I had no personal perspective.

As we began interviewing people, I was a bit unsure of what my place in this project was. People would ask Ellie and Claire if they had any personal epiphanies that came out of these interviews. And then they'd ask me what I was learning, as a non-sib. At first my answer was simple: I was learning about what it is like to be a sib. But slowly I began to understand why it was important that a non-sib participate in this unusual journey.

On a very personal level, I began to realize that if I had never considered that this community of people has an important story to be told and a voice to be heard, how many other communities are out there that I hadn't realized existed? How many other communities need to be given a voice?

I also now understand that though there are many conversations to be had between sibs about the overall needs of the group and their siblings, at some point, those conversations need to move beyond just sibs in order to have a greater impact. Non-sibs need to understand the importance of the sibling perspective, but until these conversations move outside the sibling community, that won't happen.

I'm so thankful to have gone on this trip. I'm still processing our journey and have new thoughts every day. There's one thing I know for sure: I couldn't have asked for better companions this summer. Ellie and Claire are remarkable women and put a tremendous amount of love and effort into this project. I want to thank them for being so open with me and for thinking of bringing their non-sib friend along for the journey of a lifetime.

All my love,
Renee

***

This trip, above all, taught me about being a sister. Sibs described again and again how when they were growing, they often felt like their role was that of "the third parent".  Sibs, for a variety of reasons, spent much of their time feeling maternal or parental towards their sibling instead of feeling just like their peer. They talked about their instinct to help out with caregiving and how they would often be involved in making decisions about their sibling's future. They spent time questioning their parent's treatment of their sibling and then often simultaneously wholeheartedly believed that their parents had done everything they could for their family.

I'd be lying if I said that I didn't share these feelings with the sibs we talked to. My parents would at times remind me that I was not my brother's mom and that therefore I shouldn't worry about these things. Despite these reminders, I seemed to frequently find myself bossing Adam around or speaking to him in a stern voice rather than just joking around with him as his sister. A few sibs we talked to at our last stop in LA really crystallized this distinction for me. Liz Dean told us about how she realized years later that she simply felt more comfortable acting in the maternal role because she had a model for that. She didn't know what it looked like to simply be a sister since it was just her and her brother in the family. Next, Audrey told us about how her relationship with her sister has improved so significantly since she's decided to strictly stick to the peer level when it comes to her sister. It turns out, being sisters is much more fun than being a fake parent!

I know that I am extremely lucky to be in a situation where I don't have to be responsible for my sibs' medical and physical daily care. My brother is very high functioning and therefore mostly just needs occasional therapies and supports, but not round-the-clock care. But I also know that because I'm lucky enough to be in this situation, it would be silly to not take advantage of the opportunity to be able to simply be a sister. I hope to have children one day, and when I get there, it will certainly be parenting time. But, for now, it's time to focus on my role as Adam's sister and help him thrive in that way.

I also found two new unofficial sisters in my coresearchers, Ellie and Renee. You two both inspired me daily and I hope by now you know that I will always be there for the two of you.

Forever grateful for this opportunity,

Claire

***

We'd like to again thank all of the sibs who shared their stories with us, friends who religiously read our blog and deemed it "the best read of the summer", our parents for allowing us to go on this journey and supporting us along the way, and of course, the Martin Dale family for making this part of our journey financially feasible.

Siblove,

Ellie, Renee, and Claire

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

Building Bridges

Our last sib interview of the trip was with a lovely 27 year old named Audrey. Audrey's sister is 3 years younger and has both autism and Moyamoya disease which is a condition where the arteries around your brain get progressively clogged over time. During our interview, it became clear what a wonderful advocate Audrey is for her sister as well as the sibling community as a whole. When she was in high school, Audrey started to worry about how she could integrate her sister into her life outside of the house. She desperately wanted her friends to know her sister but struggled at first to think of the right way of going about that. Eventually, she had the brilliant idea of starting a social skills club at her middle school. Listen in for her description of that experience:

As a result of her experiences with the club, Audrey was able to have a real shift in terms of the way she viewed her relationship with her sister. She spoke to how maternal she often felt when she was much younger but how she eventually transitioned away from that role. These two clips describe how this transition came to be.

At the same time as Audrey was creating new social opportunities for her sister and her friends, she was also helping educate parents in the Korean community about sibling issues -- what a champ!

Audrey was sure that her next step was to become a disability right lawyer in order to continue advocating for people like her sister. But, that's not where she's at today. Here's her story of her professional progression.

One major theme in our interview with Audrey was communication (and at times lack thereof) between parents and siblings. The next clip is Audrey's personal opinion about why there are often barriers there.

In terms of her future, Audrey craves having a network of sibs her age. She doesn't necessarily think that support groups are necessarily sustainable for people in her age range (18-35) but would love to have a simply network of people that she would know she could turn to with questions or concerns. One of our major goals is to create some sort of community for people in that exact age range so it was nice to hear that come out in an interview as a major need.

Finally, we asked Audrey our last question: What's a question you would want to ask other sibs? Here's her response.

Our interview with Audrey was a fantastic way to cap off our trip and we couldn't be more thankful for her honesty and advocacy on behalf of sibs everywhere.

 

Claire

Another Definition of Primary Caregiver

On our drive from Chicago to South Dakota, we turned down the music for a while to interview a Chicago psychologist, David. David’s sister, who is four years younger than he, was born prematurely and suffers from physical and mental retardation and severe mental illness. She was diagnosed with 18q Minus Syndrome when she was 18 after the completion of the Human Genome Project. He described her as “very smart, very eloquent, but also very evil and conniving.” He described her as the type of person that does much better in situations that involve boundaries and rules. Throughout his life, David has gone to IEP/ILP meetings with his parents, has been involved in processes relating to her medicines and living situations, and has a very open communication current with his parents regarding his sister and her life. He depicted his desensitization from being embarrassed in public, his confusion about whether his sister’s tantrums are a part of a personality or a factor of her disability (a very common incertitude we have seen over this trip), and his realization that his sister lacks empathy, which makes having a relationship with her tremendously difficult. “There are certainly times when she would throw tantrums for the sake of getting her way and it’s just very difficult sometimes to tell whether this is her trying to get her way or [her] being a relatively disabled person.”

So, why does he bother staying involved in her caretaking?

David’s story epitomizes a key trend that we have seen over and over on this trip. He told us blatantly that he stays as involved as he is because, at this point, he is “doing things for [his] parents now, more so than [his] sister.” “If my mom didn’t care that I go and see where she lives, then I wouldn’t care.”  We have spoken with many primary caregivers whose decisions towards their siblings are intrinsically tied to their feelings about their parents. Many times, older siblings take on more of a role in their sibling’s lives because they feel guilty that their parents are still doing it, that their parents will never see their retirements. Other times, we see siblings who take on adult-roles in their sibling’s lives because they know that after their parents pass on, no one else will. Still other times, we speak with sibling who feel contrite and accept caretaker roles because they know that their parents want them to do so.

As David told us, he is a psychologist that doesn’t “do feelings” in his work with cognitive psychology. Sometimes, as we have seen numerous times along this journey, the best role to take on during long-term care is the one that you are comfortable with the most, even if it involves more overseeing than seeing.

In the land of Portland...

During one day in Portland, we had the pleasure of interviewing three different women about their experiences with a brother with autism. Let's introduce you to our cast of characters: Zicra -- has a 43 year old brother, low functioning autism, nonverbal

Liana - has a twin brother (they're both 11) with high functioning autism

Elisabeth - has an older brother in his 30s with mild to moderate autism

Essentially, we had the opportunity to interview 3 women, at different stages in their lives, as they navigated the experience of having a sibling on the spectrum.

Our morning started with Zicra who brought us to one of her favorite tea shops in Portland. Her interview was full of energy and warmth and she couldn't help but smile every time she spoke of her brother Joseph Jonah, or Jojo for short. Listen here for her description of Jojo, their relationship, and her parents' openness with her about Jojo's situation.

 

Zicra has many fond memories of her childhood with Jojo but she told us one great story in particular.

What became clear early on in her interview, was just how tight knit Zicra's family was. She eventually brought this up herself, noting the ease with which her family used an us against the world mentality.

Because they were always so close growing up, Jojo struggled to come to terms with the new people in Zicra's circle including her husband and her children.

However, despite the recent adjustments, Zicra felt so positively towards her brother and his impact on her life. Perhaps most significantly, her experiences with Jojo allowed her to embrace early that it's okay to be different, an idea that many others struggle to graspe their whole lives.

After Zicra's interview, we headed across Portland to interview Liana. Liana also told us about the strong bond that she has with her brother. Since they are twins, they spend the majority of their time together, not apart. After the interview, Ellie remarked to me that I was probably very much like Liana when I was her age. And man was that an awesome compliment! Liana was so great -- a self-described book worm, extremely eloquent in her description of her brother's challenges, protective of her brother while still maintaining a sibling-style relationship with him, the list goes on and on. What seemed to make the difference for Liana was her chance to go to summer camp every year with her twin. The camp that he attended for kids with special needs had a sibling chapter that Liana loved to be a part of. Through that, she was able to meet and bond with other sibs. During the year, she keeps up with her sib friends and often shares funny stories of her brother as well as any challenges that may arise concerning her family with them. I can't wait to see where this kind, well-spoken, and funny woman goes later in life! Keep us posted Liana!

Finally, we met with Elisabeth at a coffee shop near our host's house. Elisabeth is an occupational therapist who also had many fond feelings towards her brother. She told us that he was "all around just a really great guy" and lovingly described his lifetime interest in sports and cooking.

She attributes her closeness with her brother to the fact that they were the two "big kids" in the house (they have two younger sisters) and that they tend to both be very laid back people.

I loved watching her smile as she talked about her brother's experience in high school. Watch the clip for a rare description of a person with autism's positive experience with public school.

Like most sibs, Elisabeth finds certain aspects of having a sibling with autism to be challenging. The clip below has her very thoughtful description of the specific challenges that she feels surrounding her brother.

Elisabeth has a best friend who is a sib. Below, she told us why she finds that specific friendship to be so valuable.

The current goal for Elisabeth's brother is to get a job so that he can begin to move towards independence. However, in this economy, that task has become even more arduous.

On the same note, Elisabeth thinks that what's really necessary is a shift in how society views people with developmental disabilities.

One of the reasons we decided to group these three interviews together was the common thread of siblings having a positive relationship with their sibling with autism. In many of our other autism interviews, we have found that the sibling in general has struggled very very much to create and maintain a sibling bond with their brother or sister. As a result, we knew it was necessary to profile these women in order to diversify the narrative about what it's like to have a sibling with autism. We are so grateful that we had the opportunity to meet and speak with these three Portlandian women and we wish them all the best for their future!

 

Claire

A Myriad of Roles

Another theme we have seen over this trip has been the avid participation of sibs in the arts world, specifically theatre. I, too, was an ardent member of the theatre community for many years up until high school. For me, and for many of the other sibs involved in the arts we have spoken with, the world of performance made for an excellent way to get out of the house, steal some much-fancied attention, and make a name for myself outside of the one my family provided for me. In her case, she grew up in an artist community, immersed in the drama, so to speak. I met Hannah* at an acting camp that she and I attended for many years. By the time I found out that she was also a sib, she was already a counselor while I was still a camper. Having said that, this story has nothing to do with performance on the stage. Hannah has been watching out for her younger sister, Julia*, for most of her life. Like many others, Julia has been given a range of diagnoses over the years, but her current one is Asperger’s. On that note, Hannah speculates that “a different diagnosis doesn’t mean that she’s different, it just means that someone is calling it something else” and is basically just for medical and services purposes… a firm diagnosis is really only good for legal and political reasons.” I mention this because it is a huge part of Hannah’s role in Julia’s life. Both Hannah and her parents all share power of attorney over her sister. We asked her what it is like to play such an integral part in decision-making in her sister’s life. She responded that she thinks she offers up another perspective in those choices, which she believes is helpful to her parents.

We spoke with Hannah in great detail about social issues regarding her sister. “Watching the difficulty she experienced in trying to assimilate into the culture of our school put me in this position of, rather than making friends because I enjoyed it, I went about making friends so that other people had friends. I would always find the person that no one was talking to.” Similarly, she chose her friends based on comrades whom she knew would be okay also spending time with her sister. She told us that Julia doesn’t really have any friends of her own; most of them she shares with Hannah. It took Hannah a long time to figure out what type of relationship she and her sister could truly have because she is constantly protecting her sister and has seen what happens when “her social situations spin out of control."

Like many others sibs, especially those we have interviewed who grew up in metropolitan areas, Hannah immersed herself in academics. There was the unspoken expectation that she would be self-sufficient and “to me that translated into making sure that I never got in trouble and I always had great grades and I never created a situation that they had to deal with.” “Rather than succeeding in other places in my life and having that be enough, I think I’m still very fixated on academic success… because of her,” she told us. And, she has taken this philosophy with her past high school. Now a triple major at a prestigious university (psychology, neurobiology, microbiology), she strives to understand the human brain while also running a bagel business and a theatre company. And, she just got married.

While it appears that her life is a stimulating, constantly busy, rollercoaster, she talks about how intensely growing up in her household affected her personality now. “I’m reluctant to talk about myself with people, which I think comes from most of my concerns as a kid being about [Julia] and whether or not she was okay, whether she was safe, and sometimes that makes it hard to have social interactions that are comprised of small talk because I don’t quite know…sometimes it’s hard to remember that information about me might be pertinent to a conversation.” She told us how difficult it is for her to speak openly about her feelings in her family. “I always felt like it was my job to not have feelings about it or want to talk about it,” a sentiment we have unfortunately seen in many other sibs’ reflections on growing up. Though she grew up in the theatre world, she now prefers the spotlight not to be pointed on her.

“It’s hard to know what to want sometimes,” she told us regarding her sister. She told us that she struggles with some of the decisions her sister makes and how they don’t have that much in common and how her sister has put her through a lot which has made it arduous to have a relationship with her. “Letting go of the really strong desire to have a sibling that I could be unafraid of letting my guard down [with],” was a notion she had to come to later in life when she realized that she probably would not have the “typical” sibling relationship with Julia that her friends and cousins had with their siblings.

While I had already looked up to Hannah from her amazing camp counselor skills, this interview solidified an even greater appreciation. Like many other sibs we have spoken with, Hannah, it seems, questions whether or not she has the “right” to be affected so strongly by her sister. ”I hate to say, put me through a lot, but it feels like that sometimes,” she told us honestly. Quiet and thoughtful, her many facets highlight a reflective nature that is continually striving to learn more about “raising the awareness of the holistic nature of a person’s life.”

*Name has been changed

The Sibling Leadership Network, brought to you by a co-founder and the current executive director

Through the extensive network of sibs, we were put in touch with Katie Arnold and John Kramer, two individuals who have been extremely involved in the leadership of the sibling network. John has twin younger brothers, Matt and Mike, who both have disabilities. One has Spina Bifida and the other has Cerebral Palsy and Pervasive Developmental Disorder. He is the outgoing Chair of the Sibling Leadership Network (SLN) and a co-founder of the organization. He is currently the treasurer and a co-founder for the Massachusetts Sibling Support Network. While he was doing his graduate work at the University of Illinois he also helped to co-found Supporting Illinois Brothers and Sisters (SIBS).

Katie is one of five, and one of her younger sisters has an intellectual disability. She is the first Executive Director for the SLN and does this part time as the organization is growing. Katie has also been a part of SLN since its very beginning and the national headquarter of the SLN is hosted by the Institute on Disability and Human Development at University of Illinois in Chicago where Katie works.

Listen as Katie discusses the beginnings of the Sibling Leadership Network and the first national conference:

In the clip below, John talks about his motivation for co-founding the groups and the angle with which he approaches the disability community.

Katie has been working hard to build momentum for the Sibling Leadership Network and believes that the sib community has a lot of potential to influence change

"For the most part siblings are often overlooked and kind of forgotten, so that's really motivated me to try to build the awareness of the importance of the sibling experience. I've been motivated by trying to get more siblings involved in the work of the disability advocacy movement. I feel like a lot of siblings get that from their family experience, but they aren't always tapped in and involved in the larger disability advocacy movement and I feel like there's a lot of power and potential if more siblings got engaged and involved."

We asked Katie about any advice she might have for a sib who is struggling to get information and start those often difficult conversations with their family.

"There's also a potential for conflict." She says it can be difficult because everyone is going to have different opinions about what is best and there's certainly potential for the conversations to get pretty emotional. "As tough as it is to start, once you start, the momentum will build and it will get a lot easier over time. I know that's happened with my own family." Her family only really meets to talk about it twice a year, when they have a family dinner centered around those conversations. "Just having those two more formal times has really opened this door for our whole family to feel more comfortable talking informally throughout the year and it's helped us all really think about things that we weren't able to before and that's really built over the years."

The SLN presents at a lot of conferences all over the country and talks to a lot of parent groups, just sharing the sibling experience in general so parents have a better insight and awareness from a larger context. They also speak with professionals working in the disability field about ways to engage and work with siblings.

In addition, the SLN has a set of curriculum and resources that is has developed.

Like Katie and other leaders of the SLN, I believe that there is a lot of potential within the sib community to promote positive change (both political and social) around what it means to have a disability and how those individuals and their families are thought of and treated. I was curious about the more specific policy work that the SLN has worked on, and here's her response:

To learn more about the Sibling Leadership Network, check out their website at www.siblingleadership.org.

Renee

Quotes from our online interviewees

Early on in our journey, we realized that we most likely would not be able to interview everyone who reached out to us. Some people were out of town when we were in their city or lived in a city that was not on our route and so would be out of our reach. However, we didn't want to prevent those people from being able to express their feelings about being a sib. So we created a "Share Your Story" tab on our blog with the hope that people would fill out the online form with information, anecdotes, and raw emotion about their own sib story. And fill out, they did! This post will be composed of short tidbits from each sib who has completed this form. Hope y'all enjoy their colorful and honest tales of growing up with siblings with various disabilities and differences.

***

Rebecca from Lexington, MA -- one of 9 children, has a brother with Down Syndrome who is 44.

"Probably the best memory when we were children was bringing him to Special Olympics. It was so amazing and mind blowing to me to see him accepted and part of a group. And, he competed so vigorously."

"I find it shocking to think I really don't know other siblings. (other than my own and we are a great support for each other). I have never had support services, but think that Special Olympics has contributed a lot to helping generate a good perspective."

"The hardest thing about having a handicapped brother is not the handicap. It is the social rejection. However, I think the world has changed so dramatically. I can hardly describe the contrast between when I used to take him places when he was small and now! The ADA has had so much impact in changing social values.  I hope society will continue in the vein, being inclusive, and accepting, and then the "burden" will be so much less so." 

***

Helaine from New York City - has a brother with schizoaffective disorder and Aspergers who is 29.

"However, when he was 21, he began to have outbursts, often violent episodes, in which he would wake up in the middle of the night screaming, and often punch or push my parents. My room shares a wall with his, and so often I was startled when he woke up at 2 or 3 am, and could not go to sleep fearing that he was going to hurt my parents (he has never touched me during an episode.) It was, for lack of a better phrase, scary as hell. However, I was told that what happens in the house was nobody's business...and as a 14 year old, I didn't think twice about that." 

"For YEARS my parents yelled at me for being "snotty" to my brother in mixed company, but for me, that was my way of acknowledging that my brother and our relationship was not normal. As a 14 and 15 year old, I couldn't articulate why I had so much trouble being nice to my brother. But now I can say that treating him nicely would have been going along with my parents and putting on a show. My parents have been so keen on keeping the severity of his mental illness a secret, but after some time holding it in became too much for me."

"There are very few people I feel comfortable talking about my situation at home to. But I definitely do feel the closest to my friends who know, and always feel as if I am holding back a huge part of myself from friends who don't."

"I was happy to get out of the house for college four years ago, but the transition between college and home each winter and summer break was always difficult for me. At school, I was progressing, growing, having a great time. But then I'd come home and be reminded that nothing is ever going to change for my brother, and also be reminded that he can be violent at times. I felt bad for him, for my parents, it just made me sad."

"I graduated #1 out of my 732-person high school class, and that the "me" my parents saw, I couldn't tell them what I was really feeling underneath. In the past few months, I have been trying to discuss with them the impact my environment has had on me, but so far no good. However, now that I am starting to talk about this more to others, I hope to ultimately be able to get through to them."

"I just told you all of this to express to you, as a sib, that I feel how a parents handle their son or daughter's disability can greatly impact how the sibling feels. I do feel that my parents do everything they possibly can and more for my brother; however, I think they've neglected to realize how much of an impact living with my brother has had on my life."

***

Jill from Nazareth, PA - has a brother with Down Syndrome, autism, celiac disease, epilepsy, a heart condition and other medical issues who is 20. 

"I have many positive memories of Kevin. Kevin loves going on amusement park rides and I referred Kevin for the Make a Wish Foundation. Kevin got a wish to go to Disney and my family went to Florida in May 2011. We had a fantastic time and I have never seen Kevin happier. I felt blessed that I was able to help get that opportunity for Kevin."

"As a child, I remember trying to always be perfect so my parents wouldn't have to worry about me. This has carried onto my adulthood and I have anxiety due to always trying to be perfect. I have taken a lot of the responsibility for Kevin and I am almost like a second mother to him. This can sometimes be very negative as well as positive."

"I have been very upfront with my boyfriend and told him as soon as things started getting serious. I told him that I come with this baggage and one day I will be in charge of Kevin when my parents can no longer take care of him. My boyfriend was interested in moving about 3 or 4 hours away and working on a farm. I told him that I can't because I wouldn't want to be that far away from my brother. I have this guilt inside of me that I feel it would be wrong for me to move that far away."

"I understand that things could always be worse and to appreciate things in a different way. I have a connection to the special needs community. I am proud of Kevin and am amazed everyday by him. I have a hero who is my brother." 

"I think it is important that young siblings would be reached out to and know that they are not alone. How they may be feeling is normal and they should be able to have someone to talk to."

***

Erin from Wrentham, MA - has a sibling who is mentally and physically disabled and is 14.

"My little sister is my whole world. That is pretty much the only way I have ever described my relationship with Shan. We also have 2 older brothers that show up when they feel like it but for the most part are not around for her or for me. At this point I am Shannon's other parent. My father passed away 3 years ago leaving my mom and I to make sure Shannon is ok. This has been a change in that if my mom is not around I am the only other person there for Shan."

"Pretty much everyday with Shan is positive. You can't help but be happy when Shan is with you. When you walk in she gives you a hug and barely ever stops smiling. That's not to say internally I haven't had negative struggles."

"I would want to know if they receive support from their other siblings with their sib be able this has always been the thing that bothered me most."

***

Ellen* from Boston - has an older brother with PDD- NOS who is 25.

"However, as we entered our teenage years, my relationship with L started to get really strained, as he just seemed to not be motivated or (in my opinion) trying hard enough to grow up and stop letting my parents make decisions for him or help him with things I assumed he should have been able to do on his own by that age."

"Our relationship today is still rocky at best - as bad as it sounds, we seem to get along best only when we're not around each other...I guess when we feel like we miss each other is when we actually appreciate our siblingship."

"In fact, I think some of the issues in our relationship come from the resentment I had for a long time with what I viewed as my brother's "refusal" to be normal, coupled with my parents' "refusal" to admit that there was something "wrong" or "not normal" about my oldest brother. I was confused about why my brother would act so anti-social or childish when my parents never clearly stated that there was anything different about him. And when it got to the point where I realized some of my brother's behaviors were just too odd to be by choice, I was really frustrated with my parents for trying to pretend everything was normal when it wasn't, and I think I projected a lot of that frustration onto the relationship between L and I."

"One positive thing about having a sibling with a disability is that when they succeed at something, everyone comes together to celebrate. A particular instance of that for me was when my older brother finally finished his college requirements and earned his degree after almost 7 years of classes. Getting to join in his joy at seeing himself succeed at something he'd been working at so persistently alongside the whole family was a great moment. "

"Particularly for Thanksgiving dinner - my parents love to have guests over, but I'm always uncomfortable through the whole meal because my brother talks extremely loudly and dominates the conversation with ill-placed jokes and obsessive sports talk, and he refuses to eat anything other than peanut butter sandwiches for dinner which always takes some explaining to guests when there are trays of delicious food in front of him"

"I also don't talk about my brother too much with those who don't know him, because I honestly don't know how to explain him to other people."

"I've really been drawn to this population since I was in elementary school, and right now I'd like to go on to become a school psychologist after college because it would give me the opportunity to work with students with special needs and various psychological and developmental disorders."

"However, as selfish as this sounds, I don't WANT to have to take care of my brother - I always catch myself thinking that he's the older one, so if anything he should have to take care of me."

"Even before I knew the technical name for my brother's condition, I think I was better able to empathize with families we saw out in public who had children who were visibly or seriously disabled and didn't get annoyed or upset when those children started behaving "strangely" or were having a rough time. Being a sib teaches you that people are different and that that's just a part of life."

"Even since I found out about my brother's diagnosis, I've always viewed sibs from an outsider perspective - I rarely equate what my life is like to that of the sibs I know whose siblings have more severe autism diagnoses or other disabilities. I think that's just because for so long I didn't know for sure whether or not I WAS a sib myself, and now I'm just stuck in the mindset that I'm not."

"I feel like, from my skewed perspective, more support services or counseling groups could be made available to sibs of individuals with high-functioning or mild forms of disability - I guess, sibs like me who feel like they're walking the line between normalcy and disability and aren't really sure where they or their sibling/family fall.

***

Sophie from New Jersey - has a twin brother with Autism who is 22 and an older sister with Rhett Syndrome who is 26.

"I was always close with my brother and sister, especially my brother. However, it was mainly behind closed doors. Growing up, I did not feel comfortable talking about them, or integrating them into my life other than when I was at home. We always watched movies together, and my brother and I used to play all sorts of games together, and go on hikes in the woods. I really was close to them both in the confines of our home or when we were with extended family. "

"My brother and I are extremely close. It's partly because we are twins. I feel that I understand what he's thinking most of the time, and I feel he understands me as well. They say that people on the autistic spectrum have trouble interpreting faces and understanding others emotions, but with me, I find he's the first one to know when I'm upset or angry, or just feeling down. He'll come snuggle with me. He just knows. "

"There are also times when he really frustrates me though. He does something called "silly talking." All the time. He just talks and talks and talks. He repeats commercials from his child hood, songs from his childhood, lines from movies, Sesame Street songs, and noises that I have no idea what they are. And he'll do this in public, in silent movie theaters, silent broadway shows, in crowded rooms. It seems like he makes sure he is the loudest sound in the room. And it drives me crazy even to this day."

"With Annie, we weren't as close in my childhood. It was harder to be. She cannot speak and she cannot walk. She understands what we are saying, but she is essentially trapped inside a body that does not do what she wants it to do." 

"I vividly remember going to a show with my family. It was a very quiet point of the show, and all of a sudden I hear a gargling noise. It's my mom feeding her through her feeding tube in her stomach, in the middle of a show! I wanted to disappear. I used to deal by staying silent and suppressing my feelings. Sometimes, I'd tell my parents about how was feeling, and would feel guilt for the feelings I was having about them and would stay silent most of the time. When I was embarrassed in public, I'd escape the situation, and run away. If someone stared at my siblings, I'd deal by glaring at them back. I was very selective about who my friends were when I was younger, and who could come to my house. (I even feel guilty writing all of this now) Things have gotten easier for me, and I recently started to see a therapist to talk about what it has been like growing up with 2 siblings with special needs."

"I honestly do not know too many sibs. I know one. Her brother attends a program with my brother and we together with our families have dinner on Monday evenings. This only started recently, and we really do not talk about our siblings, we just play and hang out with them together. Looking back, I truly wish I had a group of sibs who I could reach out to and could understand me."

***

Thanks to all of our sibs!

Claire

Fitting Together the Puzzle Pieces

It’s always interesting to me when we interview sibs who are both incredibly positive and reflectively negative about their experiences growing up with someone who has a developmental disability. I think something I have been looking for this whole trip has been the perfect combination of solidified good and bad. I think on our last day of interviewing, in LA, I found a woman who exemplifies these traits. We spoke with Liz in LA about her experiences growing up with her brother who is two years younger than she is and on the autism spectrum. She says she wouldn’t describe him as high functioning, but he is verbal, has had part-time jobs, and has a girlfriend.

We've found that the best word to describe the sibling relationship is usually just "complicated" and we talked a lot about that with Liz. "There are a lot of mixed feelings...Complicated is probably the best word for it."

Growing up, she played many different roles in her family. She was the protective, motherly role but also the role of the sister who had a completely separate life from her brother at home. Liz’ reflection on her role in the family was intriguing and very self-reflective. Her parents consistently told her throughut her childhood, “you are his sister, not his mother.” The issue was, Liz didn’t know how to be a sister to her brother.

“I don’t know how to be his sister. I know how to be his parent because what that meant was to take care of him.” She told us bravely about her confusions about her role in the family because she really didn’t understand what being a brother to hers was supposed to look like, as opposed to a parental role that she could easily emulate from her parent’s actions. “What do brothers and sisters do? I have no clue.”

For example, Liz opened up to us about an intense memory she has from elementary school. She told us that she once told her brother that she loves him. And he remained silent. After a while, she asked him if he knew what love meant and he told her ‘no.’ Liz took this moment with her for the rest of her life. . “As a child, that was just profound for me. I am going to grow up making sure that people feel love.” Aside from proving to be the best friend she could possibly be to all of her friends (and she still has friends from childhood and college, to prove her point), she took her brother’s lesson with her in her professional career. Liz is a casting director and she told of the direct impact her brother has on her work. It’s a “great way to connect with people daily and to help people realize their dreams and realize what they want to be doing…the audition is always important to me to make it a safe space…even if they don’t get the job, they go home knowing that they did their job today.” She also spoke on the arts world as a whole, a world she has been a part of since childhood.

The theatre is “a place where there are all these people are feeling things and acting and doing theatre and traveling around the world and that saved my life as far as being able to deal with my insecurities and shame and getting so deep into ‘what are we going to do about my brother?’.” She talked with great warmth about how impactful the world of performance has been on her life. On sibs: “We don’t have that place to freely express ourselves. We don’t have a place to say ‘I hate this. This is embarrassing. I am full of shame. I don’t want to carry this around anymore...I feel so guilty for wanting to be free of this.’”

“When I think about the things I love the most about myself, they are directly contributed to [my brother]. I am absolutely a people person” She went on to speak about her job. “I’m a cheerleader, I’m an interpreter, and all of that is directly because there is this person in my life that I had such a hard time reaching. That was my focus. I am going to be able to reach people. I am going to be articulate. I am going to talk to people about their feelings because here is a person that I can’t really talk to.”

For me, the most touching and inspiring parts of Liz’ interview were when she spoke, eloquently and passionately, about how difficult life with her brother was and is and how awful she feels about feeling that way, something I truly resonated with. “When he is easy, it’s easy to be with him. And then there’s the other side,” the side where he is not an uncle or a brother-in-law, but a brother. A brother who has embarrassed her, given her anxiety about both of their futures, and pushed her to extreme limits emotionally. She told us that as a child, she struggled to talk about him. “It’s not even in our make up to make people feel bad or uncomfortable,” and she didn’t want to “burden” anyone with the unnecessary, especially since she was “fine,” as we have seen many other sibs describe themselves. “I know what he is doing… but I don’t know how he is doing”. She said that she feels a lot of guilt about the disconnect but is not sure how or if she wants to change that. “I should be doing more but do I want to be doing more? It’s always challenging.” She told us that she once heard someone liken having a disabled sibling to having a superpower. The superpower? Being able to read people. “What is the word that it is? It’s just so raw. It’s such a fundamental thing. A part of your growing up, this person”

I’ll finish off this long post with our last portion of our conversation with Liz. We always end each interview by asking the interviewee to pose a question to any other, ever. Liz’ question was unique. “What was your darkest thought?” Though I have suppressed over and over the reality that my sister has affected me in more ways than I can count, Liz’ last question assuaged my own feelings and the feelings of many sibs that we have spoken with about the dichotomy between a sibling relationship and the actualities that are bequeathed within it.

Ellie

“it’s such a hard thing to explain, anyway, because, there’s no word, like ‘she has this or that’”

Over the course of the past two months, I have become very conscientious of the role that language plays for me in my life. Language is the basis for most of my communications, simple and complex, and provides me with stepping stones that lead to paths that lead to decisions and my growth. So what happens when language is not an option?

Before my sister was diagnosed as on the autism spectrum (Pervasive Developmental Disorder-Not Otherwise Specified/PDD-NOS), I faced many challenges associated with describing her to people. Of course, I could always spew out her learning disabilities but those never came close to depicting and illustrating her intense behavioral issues that defined life at home. Now, even though autism does not explain her in the slightest, at least I have a word to use that the general public is fairly familiar with. We spoke with two college students in California who do not have the luxury that I now have when I describe my sister to people. Interestingly, all three of our siblings share common ground behaviorally. We spoke with Mike* and Emily* who both have middle school-aged sisters. Mike’s sister is a 13-year-old twin and has been diagnosed with depression but is currently undergoing a new diagnostic assessment relating to her behavioral problems. Emily’s sister is also 13. Her sister was adopted when she was 2 from Russia and has many learning disabilities, processing issues, and attachment difficulties.

Both Mike and Emily talked in great detail about how hard it is for both of their families to constantly struggle with household peace. “All of the behaviors she has are like relatively normal things. If they happened once,” Mike said, “but because they happen so many times, they end up having this huge impact.” He told us that his family has given up on the concepts of family dinners or vacations due to his sisters rages about minute details (like specific foods at the table or not being able to see because someone was in front of her). Emily talked about how high school became increasingly difficult because she was unable to do her schoolwork due to the constant screaming and tantrums her younger sister still throws.  They both talked about the maelstrom that has been growing up with their sisters because of such intense behavioral problems.

How can a sib describe their sibling when they don’t have a name to quantify or qualify the amount and extent of their siblings’ behavioral difficulties?

“How much of this is actually some diagnosed thing? Where do you draw the line?” Both Mike and Emily discussed the dubiety associated with trying to figure out if their sisters’ behaviors were due to cognitive issues or their sisters’ personalities. When the two of them have tried to explain their household chaos to others, they literally find themselves at a loss for words. “People don’t get it and they judge me for being mean to her,” Emily observed. “I always feel like a bad person for disliking her so much… and it affects how I view myself now.”

“It was both frustrating and scary. Because on the one hand, I was like I don’t want to be like her, but at the same I was like, well if I feel the same way as she does about all of these things and I manage not to destroy our family, I don’t know why she can’t do that.”

These interviews brought on something we hadn’t quite encountered yet on our journey. How can sibs identify as sibs when they themselves don’t even know what is truly going on in their sibling’s minds? Though I strongly believe that diagnoses and epithets have drastically changed the face of the disabilities world in a multitude of positive and negative ways, I do believe now that, at least for sibs, there is some comfort in being able to have a piece of language that begins to identify the complications that go along with being a sib.

*Name has been changed

Ellie

Cosmic Injustice

A topic we haven’t talked specifically about yet over the past few months has been sibling amiability. In some of the interviews that we have conducted, there is this notion that the sibling that will be taking on the caretaker role later in life does not actually have an amicable relationship with his or her sibling and yet takes on the role regardless. We spoke with a young man, George*, in LA about this struggle.  George is a philosophy PhD candidate as well as a J.D. student at UCLA. He is eloquent and reflective and was a pleasure to speak with about his younger brother.  George’s brother is one year younger than he and has an intellectual impairment. In the beginning of our interview with George, it appeared that he and his brother had a pretty decent relationship. He said they fought a lot as kids, but most brothers do, and that he doesn’t think he was “traumatized” or “burdened” by the experiences he had growing up in his house.

Here is where his story gets increasingly interesting. George talked a lot about how he doesn’t think that his brother really likes him. He told us that if something were to happen to his parents and his brother had to move in with him, he would be okay with that situation but he doesn’t think his brother would be too happy.  He even told us that his brother has connected more with his friends and girlfriends and if his brother had to move in with him, he might have to use one of them as a mouthpiece while he acted as a “man behind the curtain.” He told us that his brother is “really good with people, just not me or my dad.” We tried to dissect this a little bit more. George told us that growing up his dad was always the disciplinarian in the house in comparison to his mom who focused more on providing a loving, calm household. George confided in us that he often sided with his father's view that manners should be stressed and healthy regimen should be implemented when possible. He believes that his brother is high-functioning enough to have had more responsibility than he did have growing up.

What’s fascinating about George’s story is not only how much of his life George is willing to alter in order to take care of his brother should that have to happen but also how hard George is going to have to try to gain some of his brother’s trust and try to make a relationship with someone that is clearly not interested in making a relationship.

His philosophy student self came through by the end of the interview when he concluded that the whole situation is really a “cosmic injustice.”

Ellie

*name has been changed

Ciara

Ciara is a wonderful, intelligent, and aware 14 year old. She's the middle child and has two siblings with developmental and physical disabilities. Her older brother has autism and she describes him like a "big, gentle giant"  and a "teddybear." Her younger sister is 12 and has epilepsy. She is closer with her younger sister than she is with her older brother, explaining that she and her sister "just click". There's often a newfound sense of annoyance towards immediate family that comes with being a 14-year-old, but Ciara didn't exhibit any of that. Instead, she makes time every week to spend with her siblings, watching TV with her sister and a Disney movie with her brother.

As a young child, she had moments when she felt embarrassed to be around her siblings in public. Despite that and other social challenges, her friends know and appreciate her siblings. Here she explains how they have affected her socially: 

What stood out the most to me was Ciara's ability and willingness to be an advocate for her siblings. This isn't unusual to sibs, but Ciara exemplifies such passion and charisma at such a young age. She's thoughtful, well-spoken, and educated about how best to campaign for the disabilities community.

"I've always been a big advocate for special needs because a lot of people don't know about it". When she was younger, her motto was "If you stare at them, I glare at you."

Meet Natalie

What I have loved about this project is that in each interview we do, no matter how similar the story may appear on surface level, there are always remarkably interesting and unique insights that the sib is able to articulate about their story. Through our blog, we were contacted by Natalie, an 18 year old, recent high school grad living near Princeton. From her emails, Natalie seemed like a bubbly, kind girl and I was pumped to meet up with her at my favorite tea shop, infiniT.

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.

Part of this distance also involved Natalie avoiding talking about her brother as much as possible. When we asked her if her friends knew her brother growing up, she responding with the following:

In the next clip, Natalie told us about how her role as a sib has impacted her socially. She touches on the guilt aspect but also the struggle to find people that understood what she was going through. Her clip reminded me of how grateful I am to have met sibs when I was in high school -- that instant comprehension is unbeatable.

For me, the most raw part of her interview was when we asked her what role she plays in her family. Watch her answer:

When our conversation turned to the topic of her connection to any other sibs, Natalie drew a blank. She lamented that she always seems to find out that she knew a sib after the fact. We've seen this in other sibs too, despite this potentially goldmine of common ground between sibs, sibs are rarely in contact with others like them. Perhaps this arises from the stigma around mentioning that their sibling has a disability or simply an uncertainty about what could come out of this unique sort of bond.

Natalie's interview did a beautiful job of illuminating for us how the sibling relationship feels when you're still in high school and sifting through all sorts of other emotional and social changes. I wish her the absolute best in her future and hope that she found her interview experience as meaningful as we did!

Claire

Family is Family

When Catherine was 9 years old, her family adopted her younger sister, Jessica, who was 6 at the time. Jessica had been living with her for a few years prior as her foster sister. Jessica is on the autism spectrum, but is high functioning and currently living independently. She has PTSD and a few other diagnoses. Catherine's story is an example of the difficulties that often occur with adoption. "She is really hot and cold with people. She loves you one day and hates you the next day.She just doesn't care. That makes it difficult for her to get along with people and just have stable relationships."

When she was younger, Catherine took on more of a parent role instead of a sibling role. She wanted to protect her sister since she had been through a lot of trauma in her early life. As a result, they never built a close sister relationship. As they got older and closer to their teenage years, they became a bit closer and friendlier. They never had a very good relationship.

Catherine sounded a bit remorseful and sad as she explained how her family hasn't been in close contact with Jessica for a while now. Jessica has been to several residential treatment centers, which didn't work out, so she is currently somewhere in Kentucky, but her family isn't sure where.

"You never knew what you were going to get" seems to be the phrase that best describes Catherine's childhood. All of her friends knew that going to their house could be a bit crazy. "She is explosive sometimes, and crazy and violent. You just never knew what was going to happen when you came over to my house." She spent a lot of time away from home because of that.

Nevertheless, she always felt as if she needed to be looking out for Jessica, and that trait has carried over into her adult life. "I always put others ahead of me and my own experiences and that isn't really healthy."

As far as plans for the future go, it is going to be up to Jessica and how self-motivated she can be. "At this point we've forced so many resources into her and she's gone to four different residential programs now... She doesn't even want to participate and make positive changes, so its just kind of disheartening for my family to see that and to know that there's not that much else we can do until she decides things are bad."

Though her sister's adoption doesn't make her any less like family, it is a tough thing for Catherine's family to deal with. "Growing up, sometimes she would say 'You're not even my real family. Why should I listen to you?' Hearing that over and over...it was really tough... I'm sure she doesn't consider us her real family, whatever 'real' means." Catherine expressed how difficult it is to be there for someone who doesn't want you there, but no matter what, her family will always be Jessica's safety net.

Renee

The "Down Syndrome Advantage" and its Challenges

One of the great things about doing so much driving this summer is that we have a lot of time to debrief after interviews. A few weeks into our project, we began to notice different trends among siblings. One of these trends is that the experiences and narratives of sibs of someone with Down Syndrome tended to be more positive overall than other interviews. We weren't sure if it was just something related to the people we had spoken with, but as we've spoken with more and more people familiar with research on sibs, we have learned about something that is called the "Down Syndrome advantage".

Below is a clip of Meghan, a post-doc at University of Illinois - Chicago who does some research on sibs and families of individuals with disabilities, explaining the "Down Syndrome advantage".

The "cute" factor of Down Syndrome often works in advantage of younger people with Down Syndrome. But then the question remains, is that "cute" factor still an advantage when individuals grow older?

In Chicago we also interviewed Alison, who is interning at Access Living for the summer, about her sister with Down Syndrome. Though she has a great relationship with her sister, Mary Grace, and has many positive memories, Alison shared some of the challenges that may occur from having a sibling with Down Syndrome.

Someone had mentioned to us that while they're young, it's easy to consider people with Down Syndrome "cute". Mary Grace is still young, so sometimes it's easy for Alison to explain certain things that Mary Grace can't do by telling her that she isn't old enough yet. Mary Grace really wants to start driving, but her family is unsure that she will ever be capable of doing so. For right now, though, it's easy to tell Mary Grace she can't because she's still young.

Another challenge that can occur is related to how high-functioning an individual is. Alison explained to us that Mary Grace has a naturally high IQ for someone with Down Syndrome and that she is very high functioning. Alison struggles with that though because she is often afraid that Mary Grace is aware of her differences. Sometimes she wishes Mary Grace were lower functioning so she would be spared the pain of knowing her differences.

While sharing some good memories she has of her family, it remains clear that there are challenges related to having a sibling with a disability.

Although Down Syndrome is more present in the media and is better understood and accepted within communities, Alison is still concerned about making sure her sister receives the proper services and protection. She worries a lot about whether or not the disability community will be able to receive the protection and benefits that are necessary because often individuals with disabilities don't have a voice to fight with. "I feel like it's so unfair that my sister can't even fight for her rights."

She considers herself fairly religious, but these feelings have made her question the existence of God, thinking, "There's no way God could exist if he created people that can't protect themselves or help themselves." "While it's taken too long for people who are gay or of a certain race or gender to get their rights, they have a voice", they can fight.

Through our interviews and the research we've learned about, we realized there is a noticeable "Down Syndrome advantage." Despite the challenges and complications sibs experience, in general, sibs of individuals with Down Syndrome have more positive experiences and feelings about their family dynamic.

Renee

"They told me I was a classic sib."

Every so often, an interview comes along where one of us connects so soundly with the interviewee that it feels more like the start of a friendship than a research project. I had the pleasure of having this sort of connection with one of the sibs who we interviewed on the phone somewhere between Chicago and South Dakota. Maddie* is currently getting her masters in education at a school in Chicago. She has twin older brothers names Elliot* and Allen* who are 4 years older than her. Allen has cerebral palsy and currently lives independently in Virginia.

From an early age, Maddie took on the "Mother Hen" role when it came to Allen and he rewarded her with being very affectionate towards her throughout their childhood. Interestingly enough, Allen would even call Maddie his older sister to others, despite being the older brother. When it comes to Allen, Maddie now cycles through a "typical sib" set of emotions, feeling overly empathetic, feeling guilty about not calling him enough, and a residual level of anger. She describes the sib relationship as simply one of heightened emotion.

Maddie has painful memories of Allen's schooling growing up. Their neighborhood elementary school was not ADA accessible so he had to go to a school that was farther away. When he reached middle and high school, desperate to be cool, other kids would pay Allen to curse out a teacher or to do something equally awful for his standing at the school. As a result, in combination with his occasional violent outbursts, Allen was expelled from both their middle and high school and wound up going to a charter school for students with special needs. Maddie is the first sib we've met to have drawn a particular lesson from these violent outbursts. She hypothesizes that perhaps the reason that individuals with disabilities seem to have more behavioral problems in their adolescent years is that they, like everyone else, have these sexual desires and emotions that they are usually unable to fulfill. Maddie says that this realization has helped her to understand her brother's actions so much better as an adult than she did at the time.

Maddie went to therapy for the first time this year. What drove her to seek help? Her one sib friend had told her that his brother had just passed away. Maddie felt sad for her friend but also was shocked to find herself feeling immensely jealous that he no longer had to care for his brother. She was disgusted with herself -- how dare she feel this way? Maddie told me that she has enjoyed therapy so far and really appreciates the opportunity to talk out and come to terms with her feelings about her family. She said that they diagnosed her as the "classic sib" - a complete perfectionist, ridden with anxiety and guilt, driven to always make others happy, high achieving so that her parents could have a "perfect child", the list goes on and on.

At the same time, Maddie is quick to mention the benefits that have resulted from her experience. She finds that she is able to deal with a broader group of people professionally and also believes that her experiences have prepared her to be a better and more compassionate teacher. She always served the role as "the negotiator" in her family, bridging the gap between her brother and her parents often. As a result, she has learned how to be patient and calm in stressful situations in her life.

Maddie had some great things to say about how it affects her dating life as well. She used to believe that she would have to date a doctor or a lawyer in order to be sure that she and her spouse could financially take care of her brother. However, as she's gotten older, her views have changed. She now believes that it should really just be about "who loves me and him and treats us well" and to not sweat the financial aspects as much in her choosing.

She's had a similar change relating to whether or not she would want to have a child with a disability. She said that "for the longest time, I really didn't want to have a kid with special needs". This view didn't come from her dislike for people with disabilities but rather just the amount of time and resources that she saw her parents put into having a child with a disability. Nevertheless, at this point, Maddie believes that even if her child had some sort of special needs, because it was made by her and the person she loves, she would love them regardless.

Maddie ended her interview by telling us how proud she was of us for doing this project. She noted how she thinks that many in the sib community are afraid of sharing their story for fear that they will get backlash from the other sectors of the disability community. In order to combat that, Maddie thinks that it will be a movement of sibs speaking out together that will create the awareness that many of us crave surrounding sibling support issues. We're glad to have Maddie as a part of this effort and thank her for her story.

Claire