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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

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

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

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

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

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

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

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

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

*Name has been changed

Ellie

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 First-timer

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

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

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

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

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

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

~Ellie

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