Chicago

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

The "Down Syndrome Advantage" and its Challenges

One of the great things about doing so much driving this summer is that we have a lot of time to debrief after interviews. A few weeks into our project, we began to notice different trends among siblings. One of these trends is that the experiences and narratives of sibs of someone with Down Syndrome tended to be more positive overall than other interviews. We weren't sure if it was just something related to the people we had spoken with, but as we've spoken with more and more people familiar with research on sibs, we have learned about something that is called the "Down Syndrome advantage".

Below is a clip of Meghan, a post-doc at University of Illinois - Chicago who does some research on sibs and families of individuals with disabilities, explaining the "Down Syndrome advantage".

The "cute" factor of Down Syndrome often works in advantage of younger people with Down Syndrome. But then the question remains, is that "cute" factor still an advantage when individuals grow older?

In Chicago we also interviewed Alison, who is interning at Access Living for the summer, about her sister with Down Syndrome. Though she has a great relationship with her sister, Mary Grace, and has many positive memories, Alison shared some of the challenges that may occur from having a sibling with Down Syndrome.

Someone had mentioned to us that while they're young, it's easy to consider people with Down Syndrome "cute". Mary Grace is still young, so sometimes it's easy for Alison to explain certain things that Mary Grace can't do by telling her that she isn't old enough yet. Mary Grace really wants to start driving, but her family is unsure that she will ever be capable of doing so. For right now, though, it's easy to tell Mary Grace she can't because she's still young.

Another challenge that can occur is related to how high-functioning an individual is. Alison explained to us that Mary Grace has a naturally high IQ for someone with Down Syndrome and that she is very high functioning. Alison struggles with that though because she is often afraid that Mary Grace is aware of her differences. Sometimes she wishes Mary Grace were lower functioning so she would be spared the pain of knowing her differences.

While sharing some good memories she has of her family, it remains clear that there are challenges related to having a sibling with a disability.

Although Down Syndrome is more present in the media and is better understood and accepted within communities, Alison is still concerned about making sure her sister receives the proper services and protection. She worries a lot about whether or not the disability community will be able to receive the protection and benefits that are necessary because often individuals with disabilities don't have a voice to fight with. "I feel like it's so unfair that my sister can't even fight for her rights."

She considers herself fairly religious, but these feelings have made her question the existence of God, thinking, "There's no way God could exist if he created people that can't protect themselves or help themselves." "While it's taken too long for people who are gay or of a certain race or gender to get their rights, they have a voice", they can fight.

Through our interviews and the research we've learned about, we realized there is a noticeable "Down Syndrome advantage." Despite the challenges and complications sibs experience, in general, sibs of individuals with Down Syndrome have more positive experiences and feelings about their family dynamic.

Renee

"They told me I was a classic sib."

Every so often, an interview comes along where one of us connects so soundly with the interviewee that it feels more like the start of a friendship than a research project. I had the pleasure of having this sort of connection with one of the sibs who we interviewed on the phone somewhere between Chicago and South Dakota. Maddie* is currently getting her masters in education at a school in Chicago. She has twin older brothers names Elliot* and Allen* who are 4 years older than her. Allen has cerebral palsy and currently lives independently in Virginia.

From an early age, Maddie took on the "Mother Hen" role when it came to Allen and he rewarded her with being very affectionate towards her throughout their childhood. Interestingly enough, Allen would even call Maddie his older sister to others, despite being the older brother. When it comes to Allen, Maddie now cycles through a "typical sib" set of emotions, feeling overly empathetic, feeling guilty about not calling him enough, and a residual level of anger. She describes the sib relationship as simply one of heightened emotion.

Maddie has painful memories of Allen's schooling growing up. Their neighborhood elementary school was not ADA accessible so he had to go to a school that was farther away. When he reached middle and high school, desperate to be cool, other kids would pay Allen to curse out a teacher or to do something equally awful for his standing at the school. As a result, in combination with his occasional violent outbursts, Allen was expelled from both their middle and high school and wound up going to a charter school for students with special needs. Maddie is the first sib we've met to have drawn a particular lesson from these violent outbursts. She hypothesizes that perhaps the reason that individuals with disabilities seem to have more behavioral problems in their adolescent years is that they, like everyone else, have these sexual desires and emotions that they are usually unable to fulfill. Maddie says that this realization has helped her to understand her brother's actions so much better as an adult than she did at the time.

Maddie went to therapy for the first time this year. What drove her to seek help? Her one sib friend had told her that his brother had just passed away. Maddie felt sad for her friend but also was shocked to find herself feeling immensely jealous that he no longer had to care for his brother. She was disgusted with herself -- how dare she feel this way? Maddie told me that she has enjoyed therapy so far and really appreciates the opportunity to talk out and come to terms with her feelings about her family. She said that they diagnosed her as the "classic sib" - a complete perfectionist, ridden with anxiety and guilt, driven to always make others happy, high achieving so that her parents could have a "perfect child", the list goes on and on.

At the same time, Maddie is quick to mention the benefits that have resulted from her experience. She finds that she is able to deal with a broader group of people professionally and also believes that her experiences have prepared her to be a better and more compassionate teacher. She always served the role as "the negotiator" in her family, bridging the gap between her brother and her parents often. As a result, she has learned how to be patient and calm in stressful situations in her life.

Maddie had some great things to say about how it affects her dating life as well. She used to believe that she would have to date a doctor or a lawyer in order to be sure that she and her spouse could financially take care of her brother. However, as she's gotten older, her views have changed. She now believes that it should really just be about "who loves me and him and treats us well" and to not sweat the financial aspects as much in her choosing.

She's had a similar change relating to whether or not she would want to have a child with a disability. She said that "for the longest time, I really didn't want to have a kid with special needs". This view didn't come from her dislike for people with disabilities but rather just the amount of time and resources that she saw her parents put into having a child with a disability. Nevertheless, at this point, Maddie believes that even if her child had some sort of special needs, because it was made by her and the person she loves, she would love them regardless.

Maddie ended her interview by telling us how proud she was of us for doing this project. She noted how she thinks that many in the sib community are afraid of sharing their story for fear that they will get backlash from the other sectors of the disability community. In order to combat that, Maddie thinks that it will be a movement of sibs speaking out together that will create the awareness that many of us crave surrounding sibling support issues. We're glad to have Maddie as a part of this effort and thank her for her story.

Claire

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