Middle-Aged

Another Definition of Primary Caregiver

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

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

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

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

In the land of Portland...

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Claire

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

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

Speaking from Experience

From now on, when I think of truly honest people, I will think of Renee S. In Chicago, we met with Claire’s friend’s mom and I can definitely say that the next time I am in Chicago, I will be taking her out to coffee. She spoke with eloquence and integrity about her older sister whom her parents always described as “slow” and was determined to have a very low IQ when she was five-years-old. Though incredibly high-functioning and extremely emotionally intelligent, doctors told Renee’s parents that her sister should be institutionalized because she was, as characterized then, mentally retarded. However, her parents refused to send their daughter to one of these places. Most of this negation of that option came from the fact that Renee’s parents were both Holocaust survivors. Though slightly unrelated to her experience as a sib, below is a description of how she thinks that her parents background affect their parental choice.[youtube=http://youtu.be/v7ze5tgisog] Even though there was a five-year age gap between she and her sister, her mother insisted that they flourish “like twins,” buying them the same outfits and pressuring Renee to take her sister with her whenever she went out. 

Even after she got married her mother still had the feeling “whatever I had, my sister should have.” Now that both of her parents have passed, Renee is her sister’s legal guardian. After many years, she has built the courage to find a life her sister is a large part of and a life that is not centered around her sister. She finds her sister activities and takes her out every week and plays a huge role in her sister’s caretaking. “I know that it is up to me and there is no one else and I have to do it,” she told us. In her interview, she called this distinction selfishness, but I commend her for her bravery in taking up more space, something she was unable to do during childhood. It is even more exemplary to note that she does all of this by herself, as her older brother is rarely in the picture regarding helping her sister. She has taken her challenges in strides. In this next clip, Renee talks about how difficult it was for her to always be looped into the same boat with her sister. 

She also told us about her parental communication regarding her sister. 

Now that she is in this caretaking role, she also confided in us about her goals for the future regarding her sister, aside from the common difficulty of finding the correct housing situation for her (right now, her sister lives in her late parents' house with live-in care).

Another incredibly interesting note that she had to offer was how she explained her sister to her four boys. Actually, she told us she didn’t have to do too much of the talking at all, because of this story that occurred when her boys were in middle school that helped acclimate their knowledge of their aunt. [youtube=http://www.youtube.com/watch?v=BpebSP0mqVE]

As a sib, we hope more people can hear Renee’s story, because this blog post definitely does not do it justice. She, too, highlighted the need for our project, exhibited in this clip below. 

We absolutely loved hearing Renee’s story and going out to a real, Chicago-pizza dinner with her family afterwards.

Ellie

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

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

Our First Rural Stop: Oneonta, NY

One of the main reasons we are going on this trip is to diversify the records of stories available about sibs. For this reason, we know that we couldn't only stop in big cities and suburbs if we were going to get the complete picture on the sibling experience. With help from a friend of mine who lives near Oneonta, we decided to stop in Oneonta, NY to see the sibling experience from a rural perspective, far from the expansive benefits that are often available in large, metropolitan areas. After the beautiful, yet slightly rainy, drive from Boston to Oneonta, we had the great opportunity of visiting Springbrook. Springbrook is a school in New York that offers several residential programs for students in New York whose school districts are unable to accommodate them as well as day programs. They also offer group homes and other therapy and occupational readiness programs for people over the age of 21. 

We were welcomed at the school by Traci Lanner, the director of the Tom Golisano Center for Autism, and  Madeline Sansevere, the director of Community Services. School wasn't in session when we visited - students were on one of their few short brakes - but the facility was beautiful. They have classrooms of about 6 students each, with one teacher and three assistants. They implement different therapies in the classroom and also offer a variety of pull-out therapies for students who may require extra time or services.

We spoke with Madeline and Traci about our project and about the various programs offered in New York for children with special needs. They explained that New York has excellent services for individuals until they turn 21. School districts unable to accommodate the needs of students will pay for them to attend Springbrook. However, once students age out, the school has very little say in where the individuals may be placed and New York's adult services varies tremendously in quality. The staff and teachers care deeply about the individuals at Springbrook. Springbrook offers to pay for teachers to get their Masters degree in Special Education and they work with SUNY Morrisville to offer classes at Springbrook to make it easier for teachers. They also offer an online program through Endicott University (in Massachusetts).

Check 'em out: www.springbrookny.org

Next, we headed over to the Family Resource Network in Oneonta where we conducted another group interview with three woman, one of whom was only 13. Here are the basic facts about these women.

Meghann is the Executive Director of the Family Resource Network and has a 24-year-old brother with Trisome 8 (a genetic disability) and autism.

Heidi works with her sister who is developmentally disabled at the Main View Gallery in Oneonta which helps provide artistic jobs for individuals in the community that are developmentally impaired.

Manu is a 13 year old sib to one brother who has ADHD and bipolar disorder and another brother who has cerebral palsy, cortical dysplasia, epilepsy, and is non-verbal.

We had a fantastic interview with all of them in one room so we will basically let the clips speak for themselves.

As we have seen time and time again, sibs seem to have these incredible "old souls" that cradle maturity and insightfulness beyond compare. Below, Manu illustrates some of the turmoil that went along with her relationship with her brother.

One of our favorite questions to ask sibs is what their roles in their families were growing up and what they are now. It was interesting to see the range of answers we received from our three interviewees. From Heidi's job of "getting her to giggle" to Manu's role as advocate and future caretaker, we learned a lot from their stories.

Another question we always get a range of answers to regards how having a sibling with special needs affects sibs socially. Below are some their responses.

 Manu shared light on a phenomenon we hadn't truly fleshed out. Many of the sibs that we interview speak about striving for academic excellence in order to "make up for" their sibling's lack of abilities to do. Manu shared some of the issues that affect her personal academics because of the house that she lives in.

One of the main reasons we stopped in Oneonta was because we wanted to see a rural perspective on the disabilities community. We gained a lot of interesting information on what it is like to care for someone with special needs in a small, economically-depressed area. They talked about how difficult it is for people with special needs to gain access to jobs and healthcare. "The threat of being cut-off is always there," Heidi told us.

We are so ecstatic that we got to meet with all three of these amazing women in Oneonta and certainly learned a lot from them.

 

 

Ellie and Renee

Undiagnosed

During our D.C. stop we met with a 45 year old woman in a cute café outside the city. What was especially interesting about her family’s story is that her brother has remained undiagnosed despite a long list of social and language related difficulties. Granted, her brother is in his late 40s now and diagnosing is different now than it was then, but she and her family have dealt with him his whole life without a diagnosis or the medical “advantages” that go along with having a name for the problem. She speculates that her brother probably has some form of Asperger’s, although she thinks he wouldn’t have been put on the Autistic Spectrum when he was growing up because he didn’t appear severe enough, especially since Asperger's was added to the spectrum only recently. She described her brother for us, explaining that he lacks many social and hygienic skills, suffers from speech and language issues, and currently works the night shift stacking shelves at an Office Depot equivalent. She said he never really had any friends but he is currently married to his second wife. He has three children. “If you want to call that independent, you can, because he’s not in a group home,” she told us, although it was clear that she did not agree. We asked her about her relationship with him. She certainly had a lot to say but, just like many other siblings we have spoken with, she described them as personal issues that she, herself, was dealing with, not the two of them. She depicted a lot of anger towards him because he has put so much stress on her aging parents, one of whom still works 2 jobs even though he is in his seventies. “There are definitely times when he has learned to manipulate my parents.. that just infuriates me.” Yet despite her anger, she, like many other sibs, often simply suppresses her emotions when she's around him. She let us know that we would not be able to tell that she felt this way if we were to see her with her brother. She struggles with the fact that her parents support him financially because she doesn’t support providing for him at his every whim. She once brought her frustrations up with her dad who became very aggravated with her. “Sorry,” she said “these are my emotions.” She described how, when she is one of his primary caretakers after her parents' passing, she is going to handle his financial support in a much more regimented manner. While she certainly respects and cares deeply for her parents, it's clear that a portion of her anger seems to have come from her disagreements with how they have consistently supported and enabled her brother's lifestyle.

She said she can essentially only talk to her sister about her brother. “We literally felt like we were the only ones who could really understand each other. Because it’s so hard when you’re trying to describe [him] to someone because he doesn’t have a diagnosis.” She told us that, “even good friends are good listeners but unless they have a sibling, they really don’t get it…they can’t really empathize and they don’t really know what to say.” She has wrestled with how and to whom to unroll her brother’s story. She, along with many others that we have spoken with, try to understand “how much is he really able to comprehend versus how much of it is his disability” and she yearns to speak with others about their experiences as sibs. She talked about wanting to know about services she could get for her brother and also emotional support she could get for herself. “It’s one thing online, it’s great, but person to person is even better”. She was definitely a reminder to us of the need for increased visibility around sibling issues as well as access to high-quality and yet affordable support services for siblings.

We loved speaking with her about her life and her brother and her frustrations with being a sib. She really proved to us, once again, how important sibs’ stories are, for the sibs themselves, for their peers, and for other sibs around them.

Claire and Ellie

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

Sibling, Mother, Daughter

In between our New Orleans and Atlanta stops, we had the opportunity to interview an amazing woman, Karen Driver. Karen happens to be both the sister of two individuals with disabilities as well as the parent of a child with cerebral palsy. See the clip below for Karen’s description of her multi-layered connections to the disability community as well as her leadership role in providing services there.

Clearly, Karen has had a lot of experience navigating the often complex world of disability as it relates to her own life as well as her relationships with her friends and family. My first impression of Karen was overwhelmingly positive. Here was a woman who had driven an hour from her home to meet up with a few college kids and share her experiences with us and she was just so kind from the get go. Because of this, I was interested to hear that when she was my age, she had a pretty poor relationship with her siblings. The youngest of the crew, she described her bond with her brother and sister as not affectionate and also has had to deal with the fact that her older sister has chosen to not join in the caretaking of their two disabled siblings. As many sibs do, Karen often struggled with thoughts of who would care for her siblings after her single mom passed away. See below for her poignant description of these conversations with her mom.

Throughout our interview, Karen touched and elaborated on the differences between her family growing up and her current family unit of her typical daughter and atypical son. One thing that seemed extremely important to Karen was how affectionate and loving the family was able to be, given the presence of disability or difference. Also in this clip, Karen makes the comment that the sibling experience is a journey, which made us so excited to see this new double meaning to our blog title!

Given her very positive attitude today about being a sibling of two individuals with special needs, I was surprised to learn how bad her home life had been at some points. Specifically, during her brother's teenage years, he developed some more intense behavioral problems. When we asked her how that compares to how she balances her family members today, it became clear how much of a delicate balance Karen attempts (and almost always succeeds) to have between all of her responsibilities.

Something that many siblings have confided to us is that even if they are the younger sibling, they often wind up functioning in the role as the older sibling. I had the intuition that we had a very wise woman sitting with us so I thought I would ask her thoughts on this issue as the "baby" of a family of four. See below:

Another thing that both Ellie and I have encountered is people telling us that we are very mature for our age. I remember getting this comment, especially when I was younger and around my parents friends. When people told me that, for whatever reason, I never took it as a compliment. It always made me feel like I had failed at presenting a carefree front to them. Karen also spoke to how both she and her daughter often get told that they have "old souls". As she did with so many other topics, Karen was able to present this comment in a positive way that I hadn't thought of before. She explained that to her, being mature for her age meant that she just realized earlier in life the things that just don't really matter. Later in the interview, she elaborated on that by saying that being the sibling of someone with special needs has allowed her to let go of what other people think and start enjoying living her life much earlier than her friends who have not gone through that experience.

Karen's interview was certainly a source of inspiration to me as it made me reflect on how much can change and develop in a sibling relationship over time. Growing up, there were moments where I worried our relationship would be frozen in whatever was its current state. Talking with and listening to Karen began to help me shift my thinking about our relationship to a more evolutionary and ultimately hopeful perspective and for that, I am forever grateful.

Claire