Young Adult

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

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

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

“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

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

A Story of Successful Support

Back in Chicago, we met with Maureen, a lawyer in Chicago who has an older brother with autism. Overall, Maureen's experience as a sib has been pretty positive. Maureen's story is one of great planning and support. Maureen and her brother Donny, who is just three years older than she is, are very close. "He really adored me, and I felt that growing up." She remembers a time when he was the older sibling, but as she got older, as is the case with many younger sibs, Maureen fell into the role of the older sibling, acting as the babysitter, the caretaker, etc.

Usually, we ask people to tell us what it's like when everything is going well in the family. Instead, we asked Maureen if she had a favorite story regarding her brother, and here's her response:

When asked about challenges she experienced as a kid, here's what Maureen had to say: "I was very lucky. I grew up with a lot of support services."

As a child, she and her brother both attended a camp that integrated the campers who did and didn't have disabilities. She attended from kindergarten to 5th grade and she got to meet a lot of other sibs through the program. She cited the camp as one of the important supports she had growing up. "It was nice to not have to talk about it and just have that acceptance."

As her brother got older, more challenges arose. He became more aggressive and temperamental because of his hormones and would often pull Maureen's hair. When he was 16 and she was 14, he went to a residential school for people with autism, and that was in part because of his aggression toward Maureen. Despite all that, Maureen reiterated that her brother was very loving and she feels lucky that she was able to appreciate that from a young age.

She and her parents speak openly about Donny, and she was really encouraged to be that way. "There was this explicit direction that I should talk about it if I didn't have enough time, didn't have enough attention."

"I feel like I've been very lucky because I've had friends whose parents will not talk about it."

"What I worry about as I get older, is that I don't have other siblings, so I worry about my parents and caring for them, and at some point I am worried about my brother."

"I think that we've had the conversations we could have, but the only thing I wish is that it would be easier to identify another guardian."

Currently, she's on the board of SIBS Illinois and is involved with the chapter, but she isn't directly involved in the disability community. She expressed a desire to become involved and become an advocate.  "I think up until this point in my life, I kind of felt like I did my time and wanted to stay away from it for a little while."

 

Renee

At the intersection of rage and reflection

During our Chicago visit, we had the opportunity to interview employees of access living. One is Scott, who is an amazing advocate for people with disabilities, especially in terms of securing them supports so that they can remain in their own home independently if they please. Scott is very motivated by his anger about the state of disability services currently. Scott is part of an army family and is a veteran himself. He has two siblings with some sort of disability. His brother was diagnosed with cerebral palsy at age 2 and his sister was diagnosed with dyslexia.

We always ask sibs if they think that their experience affected them at all academically. That question is based in our knowledge that many sibs become high achievers, either from a place of wanting to not take for granted their intellectual capabilities or a desire to be "the perfect child" for their parents. Scott quickly let us know that he did not fit the mold, telling us that he "passed high school by the skin of his teeth". However, he reminded us that it's important to not only think about maturity and growth in the academic arena. See below:

Anger is an emotion that comes up pretty frequently in our conversations with sibs. Normally this anger has something to do with either the behaviors that their sibling displays or their feelings of resentment that they didn't get more time as a child. Scott's anger was a different form all together, and was aimed not inside the family but outside its realm.

Scott used this phrase again and again, the idea that our society was wrong, and oppressive, and in many circumstances even awful. Here, he describes the problem with the diagnosis process for families, and the psychological harm that it could potentially cause because of the specific and recommended paradigm for coping.

Many of our Chicago sibs spoke of the dire lack of services in Illinois. Here, Scott makes the perfect metaphor of the level of struggle to secure the necessary supports for individuals with disabilities.

This made the perfect segue into Scott's professional life. Scott works for Access Living, an organization that helps provide the appropriate supports so that individuals with disabilities can continue living independently and not be moved into a nursing home or more institutionalized setting. Simultaneously, Scott volunteers with ADAPT --- taken from ADAPT's website --- "a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom." Listen to Scott describe ADAPT's past and current work:

Scott's story eventually took a tragic turn. His brother, while living independently, tragically died after attempting to clean up an accident he had made. Scott has so much justified anger about this incident. For months, he and his mother had searched for someone to come in to help his brother so that he wouldn't have these long periods alone. He details his struggle here in these next two clips:

I'd like to end his story with his description of his brother, simultaneously beautiful and so revealing about the importance of prioritizing independence for those with disabilities.

 

Claire

A Touch of Humor

In New York City, we sat down with Annie, who is a student at Oberlin. One of the most poignant things about our interview with Annie is her close relationship with her brother, Lee. From the moment we asked her about him, she couldn't stop smiling.

Something that stood out almost immediately to us was her family's use of humor to cope with Lee's autism. The whole family thinks that Lee is hilarious and they often trade stories about him.

She understands Lee and, like many other sibs we've talked to, often finds herself playing a more nurturing role in the family, even from a young age:

Lee has reached all parts of Annie's life. She told us that Lee is such a fundamental part of who she is, she can't imagine not talking about him with her friends. Though she loves her brother deeply and appeared to have few negative feelings towards him, as a young girl she became interested in theater because it created a space where all the attention could be focused on her, and not her brother. Annie isn't the first sib that's mentioned an interest in theater.

She is also fascinated by people, which according to her, is a result of having a brother with Autism. As an English major, she is interested in the ways that experience can exist outside of language, since her brother's expressive language isn't as good as that of a neurologically typical person. She even recounted a story in which she used the critical theory she was studying in class to explain her brother's condition and experience to a fellow classmate. Because Annie is so close with Lee and the rest of her family, it seems like he's been a factor in most aspects of her life.

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