SLN

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

A Story of Successful Support

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

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

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

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

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

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

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

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

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

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

 

Renee

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

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