Male Sibling

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

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

The Queen and the Royal G-ddess

Our first day in Chicago, we were lucky enough to meet with the Queen, or at least that’s what her seven other siblings refer to her as they call her older sister, the Royal G-ddess. Nora Handler is a sibling of three brothers, all of whom have developmental disabilities. She is an avid member of SibNet, on the board of SIBS, speaks on many different sibling and disabilities panels, and is a published author. Needless to say, she had a lot to talk about. Something we found particularly intriguing about her story was the fact that she found sibling resources considerably late in life. She and her older sister only really got involved with the sibling support world after their mother died, just a little over a decade ago. “We consider ourselves, our family, the poster child for how not to do it, as far as future planning goes, because it wasn’t done.” She told us that she got so involved in this community because of one key lesson that she can teach other sibs. “I go around and tell this story so that other people will... get up the nerve and have this conversation with their family that they need to have,” because she and her other siblings did not have future-planning conversations until it was too late.

After their mother passed away at a young age, she and her older sister really took on the caregiver roles of the family. For the first six months, she and her sister would take turns driving hours away to stay at their mom’s old farmhouse where all of their brothers were residing. They, along with help from their other siblings, really worked together to begin the care taking process. 

Nora also spoke with us about the differences between a parental role of someone with special needs and a sibling caretaker role. She said that she and her sister were much more “able to let them take the risks that [their] mom was never able to let them take.” And, with the help of her husband, they began taking their brothers out more often, like to baseball games. “We think sibs will do that dignity-of-risk thing a little bit” more than moms will just because of the sibling dynamic. Though she and her sister “feel like moms,” she does recognize that there is a difference in her caretaking style from that of her mother’s.

In this next clip, Nora talks about how her family was not the “picture perfect” family and how hard that was for her after her mom passed.

Next, she talks about how hard it is to find other sibs, especially in times of need. 

Here, she describes what she would have liked to have had before she had taken on this caretaker role. 

That being said, it was clear to us that Nora loves what she does for the sib and disability communities right now. Though she relayed to us that humor is absolutely her coping mechanism for the hard parts in her (her words) “warped” family, braving past those difficulties to help this community find its words has helped a tremendous amount of people who have listened to her story. “It’s what I wish I could do as a job,” she told us. We wish that, too, Nora!

~Ellie

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

Root for the Underdog

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

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

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

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

Claire

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.

Three Women, Three Perspectives

When we were in New York City, we had the pleasure of conducting our first-ever group interview. The women that we interviewed were all members of a group called SibsNY, essentially an organization formed by sibs, for sibs that tries to connect sibs to one another and provide them the support and advice that they might need. Here's a short profile of each of our interviewees:

Lindsay: a math teacher from Staten Island, part of a family of four, with a younger sister named Julia with microcephalia (a condition where the baby's brain stops growing while in utero) which has led her to have pretty severe impairments throughout her life. Lindsay's sister is currently in a day program and community residence on Staten Island.

Cecelia: also one of four, with a younger brother with Cerebral Palsy and a developmental disability. Has two older sisters but both of them are much less involved than she is with her brother. Brother currently lives at home with her mom who is now 90. The brother's disability was always kept very hush hush, even within the family.

Mary*: also one of four(!),has an older brother, a younger sister and a younger brother. Currently a child psychiatrist in NY. Older brother was never formally diagnosed with anything but has mild to moderate cognitive deficits, social deficits and is emotionally immature as well. Brother has married twice and currently has three children.

*Name has been changed.

**Because not all of the women were comfortable with video recording, this blog post will be spliced in with audio recordings rather than video.

When asked to describe their relationships with their sibling, the women had very different responses for us. Lindsay described how despite the fact that Julia doesn't call Lindsay or sister and can't verbalize her feelings towards her, she knows that their relationship is valued and special by the way Julia lights up when Lindsay walks into her program.

Cecelia struggled more with this question. Because her parents were so set on the idea that having Bobby as a brother should not influence their quality of life, the siblings often left him behind in order to lead their own lives. Cecelia recently realized how detrimental an effect this had on Bobby and has since thrown herself wholeheartedly into improving Bobby's self-esteem and emotional health. Listen here for her depiction of her family life:

 

[soundcloud url="http://api.soundcloud.com/tracks/99713926" params="" width=" 100%" height="166" iframe="true" /]

The quality that most influenced Mary's relationship was the sheer intensity of that bond. Because she was born immediately after her brother Mike*, the direct comparison between the two of them was inevitable. While Mike was floundering a bit academically and socially, Mary was valedictorian, held many leadership roles and always felt that she needed to be the "reliable one" or the "one who could get things done".

[soundcloud url="http://api.soundcloud.com/tracks/99863929" params="" width=" 100%" height="166" iframe="true" /]

What was so fun about this interview for me is that it truly was a conversation among sibs instead of a more structured interview. One of us would pose a question and then the sibs would take it in whatever direction they wished, bouncing off one another's ideas. One place where there seemed to be a lot of common ground was when we asked the sibs what was valuable about having a sibling with special needs. While each sib struggled to delineate what was caused by being a sib as opposed to just their personality, they all mentioned that they believe that being a sib had made them more compassionate. Each woman added their own personal qualities that they attributed to their experience as a sibling as well:

Lindsay: [soundcloud url="http://api.soundcloud.com/tracks/99783279" params="" width=" 100%" height="166" iframe="true" /]

Cecelia: [soundcloud url="http://api.soundcloud.com/tracks/99783672" params="" width=" 100%" height="166" iframe="true" /]

Mary: [soundcloud url="http://api.soundcloud.com/tracks/99783190" params="" width=" 100%" height="166" iframe="true" /]

Finally, I want to leave y'all with something that Mary said. She spoke beautifully about how sometimes what a sib wants most is to be seen outside their role as a sib. [soundcloud url="http://api.soundcloud.com/tracks/99788157" params="" width=" 100%" height="166" iframe="true" /]

Bringing sibs together to share their experiences with one another was always one of my goals for this project. Getting to watch that connection happen right in front of us was inspiring, thought-provoking, and gave us even more fuel for our sib-fire.

Claire

Actress, Advocate, Author

During our short stop in Pittsburgh, we had the opportunity to meet an amazing woman named Delilah Picart. Delilah kindly invited us over to her home where we were able to meet her younger brother Eric, who has Fragile X syndrome and was visiting for the week. When we asked Delilah about her occupation, she described herself as an actress, advocate, author. Listen below as she takes us through each aspect of her complex "job description".

While many sibs feel frustrated when people discriminate against those who are disabled or disrespect them with their language, Delilah is notable for her commitment to taking action when she notices these sorts of prejudice. In the clip below, Delilah tells about how she combatted discrimination at a local restaurant.

This sense of protecting and standing up for her brother also applied in terms of who she chose as friends and boyfriends. Delilah, like many other sibs we've spoken with, uses what is referred to as "the sibs test". Listen here to her description of her choices regarding her social life.

In terms of how Eric has impacted her personality, Delilah told us that she struggles to decide what parts of her personality are a result of her brother and what parts are just a part of who she is. However, one trait she seemed sure about was her propensity to give everyone the benefit of the doubt.

Delilah also frequently advocates for more support services for sibs like herself. Below, she makes her case for the importance of including sibs in the caregiving process.

In this next clip, Delilah lays out a step by step way to engage siblings in the caregiving process, even from the original time of diagnosis, stressing the importance of letting sibs ask questions about the condition and providing them with timely and appropriate channels of support.

Finally, we asked Delilah what her favorite question to ask sibs is. She responded below and I hope you'll be as touched by her response as I was!

 

Claire

Meet Matthew

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

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

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

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

Thanks for talking with us, Matthew!

Ellie

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

Wise Words from Adults

One of the cool parts about the interviews we've done has been the range in ages among sibs. We've talked with people our own age, with some younger children, and with a few adults. Though we have loved talking to everyone and are so appreciative that people are willing to open up to strangers, we are especially appreciative of the adults who have reached out to us because their experiences are able to provide us with crucial perspective about how the stigma around having a disability and the experiences that come with being a sib have evolved over the years. We spoke with an adult in North Carolina who was originally from Canada and one of fi children. He shared that when his younger sister was born with Down Syndrome, the practice at the time was to either institutionalize the child or put them in foster care. His family chose the latter option, which meant that his sister was living in another home with a foster family. Though she was still part of the family and they visited frequently, it was confusing for him as a child. His wife observed that all of his siblings have chosen a helping profession and that it might be related to having a sister with a disability.

One of the women we spoke to has an older brother who is developmentally delayed. As a nurse, she did one of her rotations at a state school. She was horrified by the quality of care she encountered. According to her, many of the men there with intellectual disabilities were forced to be the caretakers of the other individuals at the facility. That experience helped her appreciate how fortunate she was to have her brother living with her family at home and provided us with an important historical perspective for understanding the relationship between adults and their siblings during their childhood.

Although the services offered for individuals with special needs and their siblings and family aren't perfect, these interviews, along with Karen's interview (found here), have allowed us to appreciate how far services have come. They've been able to provide important insight into how sibling relationships can evolve over time. Karen, for example, didn't have a great relationship with her two siblings growing up - they loved each other, but they often didn't show it and weren't very affectionate - but now that she and her siblings are older, their relationships have transformed into more affectionate and closer ones. Many of the younger sibs we've talked to have expressed fear or concern about future plans for their siblings when their parents can no longer support them. Talking to older sibs has allowed us to have a better idea about what lies ahead.

Renee