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Building Bridges

Our last sib interview of the trip was with a lovely 27 year old named Audrey. Audrey's sister is 3 years younger and has both autism and Moyamoya disease which is a condition where the arteries around your brain get progressively clogged over time. During our interview, it became clear what a wonderful advocate Audrey is for her sister as well as the sibling community as a whole. When she was in high school, Audrey started to worry about how she could integrate her sister into her life outside of the house. She desperately wanted her friends to know her sister but struggled at first to think of the right way of going about that. Eventually, she had the brilliant idea of starting a social skills club at her middle school. Listen in for her description of that experience:

As a result of her experiences with the club, Audrey was able to have a real shift in terms of the way she viewed her relationship with her sister. She spoke to how maternal she often felt when she was much younger but how she eventually transitioned away from that role. These two clips describe how this transition came to be.

At the same time as Audrey was creating new social opportunities for her sister and her friends, she was also helping educate parents in the Korean community about sibling issues -- what a champ!

Audrey was sure that her next step was to become a disability right lawyer in order to continue advocating for people like her sister. But, that's not where she's at today. Here's her story of her professional progression.

One major theme in our interview with Audrey was communication (and at times lack thereof) between parents and siblings. The next clip is Audrey's personal opinion about why there are often barriers there.

In terms of her future, Audrey craves having a network of sibs her age. She doesn't necessarily think that support groups are necessarily sustainable for people in her age range (18-35) but would love to have a simply network of people that she would know she could turn to with questions or concerns. One of our major goals is to create some sort of community for people in that exact age range so it was nice to hear that come out in an interview as a major need.

Finally, we asked Audrey our last question: What's a question you would want to ask other sibs? Here's her response.

Our interview with Audrey was a fantastic way to cap off our trip and we couldn't be more thankful for her honesty and advocacy on behalf of sibs everywhere.

 

Claire

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

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

Ciara

Ciara is a wonderful, intelligent, and aware 14 year old. She's the middle child and has two siblings with developmental and physical disabilities. Her older brother has autism and she describes him like a "big, gentle giant"  and a "teddybear." Her younger sister is 12 and has epilepsy. She is closer with her younger sister than she is with her older brother, explaining that she and her sister "just click". There's often a newfound sense of annoyance towards immediate family that comes with being a 14-year-old, but Ciara didn't exhibit any of that. Instead, she makes time every week to spend with her siblings, watching TV with her sister and a Disney movie with her brother.

As a young child, she had moments when she felt embarrassed to be around her siblings in public. Despite that and other social challenges, her friends know and appreciate her siblings. Here she explains how they have affected her socially: 

What stood out the most to me was Ciara's ability and willingness to be an advocate for her siblings. This isn't unusual to sibs, but Ciara exemplifies such passion and charisma at such a young age. She's thoughtful, well-spoken, and educated about how best to campaign for the disabilities community.

"I've always been a big advocate for special needs because a lot of people don't know about it". When she was younger, her motto was "If you stare at them, I glare at you."

Meet Natalie

What I have loved about this project is that in each interview we do, no matter how similar the story may appear on surface level, there are always remarkably interesting and unique insights that the sib is able to articulate about their story. Through our blog, we were contacted by Natalie, an 18 year old, recent high school grad living near Princeton. From her emails, Natalie seemed like a bubbly, kind girl and I was pumped to meet up with her at my favorite tea shop, infiniT.

Natalie has a brother with autism. She has definitely struggled to come to terms with her family dynamic, often preferring to be out of the house except for "showering and sleep, that's it". She told us how despite her physical distance from her brother, he was constantly on her mind as she struggled with feelings of guilt about the opportunities and experiences that she was getting to have that would likely never be a reality for her brother.

Part of this distance also involved Natalie avoiding talking about her brother as much as possible. When we asked her if her friends knew her brother growing up, she responding with the following:

In the next clip, Natalie told us about how her role as a sib has impacted her socially. She touches on the guilt aspect but also the struggle to find people that understood what she was going through. Her clip reminded me of how grateful I am to have met sibs when I was in high school -- that instant comprehension is unbeatable.

For me, the most raw part of her interview was when we asked her what role she plays in her family. Watch her answer:

When our conversation turned to the topic of her connection to any other sibs, Natalie drew a blank. She lamented that she always seems to find out that she knew a sib after the fact. We've seen this in other sibs too, despite this potentially goldmine of common ground between sibs, sibs are rarely in contact with others like them. Perhaps this arises from the stigma around mentioning that their sibling has a disability or simply an uncertainty about what could come out of this unique sort of bond.

Natalie's interview did a beautiful job of illuminating for us how the sibling relationship feels when you're still in high school and sifting through all sorts of other emotional and social changes. I wish her the absolute best in her future and hope that she found her interview experience as meaningful as we did!

Claire

Family is Family

When Catherine was 9 years old, her family adopted her younger sister, Jessica, who was 6 at the time. Jessica had been living with her for a few years prior as her foster sister. Jessica is on the autism spectrum, but is high functioning and currently living independently. She has PTSD and a few other diagnoses. Catherine's story is an example of the difficulties that often occur with adoption. "She is really hot and cold with people. She loves you one day and hates you the next day.She just doesn't care. That makes it difficult for her to get along with people and just have stable relationships."

When she was younger, Catherine took on more of a parent role instead of a sibling role. She wanted to protect her sister since she had been through a lot of trauma in her early life. As a result, they never built a close sister relationship. As they got older and closer to their teenage years, they became a bit closer and friendlier. They never had a very good relationship.

Catherine sounded a bit remorseful and sad as she explained how her family hasn't been in close contact with Jessica for a while now. Jessica has been to several residential treatment centers, which didn't work out, so she is currently somewhere in Kentucky, but her family isn't sure where.

"You never knew what you were going to get" seems to be the phrase that best describes Catherine's childhood. All of her friends knew that going to their house could be a bit crazy. "She is explosive sometimes, and crazy and violent. You just never knew what was going to happen when you came over to my house." She spent a lot of time away from home because of that.

Nevertheless, she always felt as if she needed to be looking out for Jessica, and that trait has carried over into her adult life. "I always put others ahead of me and my own experiences and that isn't really healthy."

As far as plans for the future go, it is going to be up to Jessica and how self-motivated she can be. "At this point we've forced so many resources into her and she's gone to four different residential programs now... She doesn't even want to participate and make positive changes, so its just kind of disheartening for my family to see that and to know that there's not that much else we can do until she decides things are bad."

Though her sister's adoption doesn't make her any less like family, it is a tough thing for Catherine's family to deal with. "Growing up, sometimes she would say 'You're not even my real family. Why should I listen to you?' Hearing that over and over...it was really tough... I'm sure she doesn't consider us her real family, whatever 'real' means." Catherine expressed how difficult it is to be there for someone who doesn't want you there, but no matter what, her family will always be Jessica's safety net.

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

A Researcher and a Sib

The morning we left Atlanta, we got to speak with a young woman who is currently doing Autism research with Emory University. In addition to having an academic interest in Autism, she has a younger sister who is on the spectrum. She was sweet, intelligent, and compassionate and her story provided us with some new perspectives.

I've noticed that so many sibs are more compassionate and understanding than the average individual. Their siblings have taught them to appreciate every person's abilities. Many sibs have also told us they've been called "old souls" in the past and often feel more mature than others their age.

She is a first generation immigrant - her parents are both from China - and she explained that for a long time, her father didn't believe in Autism. They tried many different therapies and diets in an effort to "cure" their daughter of Autism and often pointed out that if she worked hard enough, she could make her autistic tendencies go away. She took it upon herself to show her parents that Autism is a real diagnosis, sifting through blog posts and scientific articles that could teach her more about her sister's disorder.

Her sister was diagnosed at a later age, just before middle school, and as a result, our interviewee is interested in research related to infants, early intervention, and early diagnosis. She studied psychology as an undergrad, but is reluctant to become a clinician for the fear that her patients' stories will hit too close to home. Instead she is pursuing a research-focused degree in developmental psychology and hopes to make a positive impact on individuals and families that way.

She mentioned that her strong academic drive results from her ability to appreciate the abilities she has that her sister does not. Like many sibs we've spoken to, she didn't want to feel as if she wasn't taking advantage of her intelligence and opportunities.

She is very close with her family, despite the challenges and family conflicts that have resulted from her sister's diagnosis. She received her undergraduate degree at UC Berkeley in order to stay close to home, and after several years in Atlanta, she is going back to California for graduate school. Her other sister is abroad in China, but she said when they do have family time, they hang out like any other siblings would.

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

"We all have the basics."

Whenever we tell people about our project, the second or third question that they tend to ask is how do you decide who to interview?  Do you only interview people with autism? Is it only people with mental disabilities and not physical ones? The way that we’ve come to answer all of these questions is to let the sibs take the lead. If they reach out to us and consider themselves to be a sib, who are we to tell them that they’re not? I started with this question because yesterday we had the chance to have our first interview with a sib of someone with mental illness, specifically bipolar disorder. Emily, a fellow college student who I met at a summer program, opened up to us in such a candid yet caring way about her older brother Jesse and his long time struggle with his disorder.

Jesse, now 21, was diagnosed with bipolar disorder unusually young, at the age of 8, which means that Emily has been living with this disorder for a large portion of her life. Perhaps because she has a much younger sister, Emily almost immediately stepped into a motherly role, often taking her sister and leaving the house whenever Jesse was embroiled in one of his drastic mood swings. However, it’s clear that Emily never resented this extra responsibility, saying that “I took care of her when my parents needed to give attention to Jesse.” It is clear though that Emily struggled with a variety of emotions during this time, especially fear. She told us that “I would stay away from him, I was scared,” noting that for those with bipolar disorder, “they don’t mean to hurt you but there is potential for them to hurt you.” Despite these childhood challenges, Emily repeatedly spoke of how close knit her family is and how her family jokes that she’s the glue that holds everyone together, a sentiment that seemed truer and truer as the interview continued.

One trait that I especially admired in Emily was her commitment to being a wonderful mentor to her younger sister regarding how to handle Jesse’s outbursts and difficulties. After Emily’s parents pointed out Katie’s constant emulation of Emily, Emily made it a point to set a good example for her when it came to Jesse. She explained to Katie the importance of being really accepting of Jesse since he didn’t bring these issues upon himself. Emily encourages Katie to try to ignore the outbursts as much as possible and to always remember that Jesse is their brother.

Like other sibs we’ve spoken with, Emily firmly believes that having a brother like Jesse has impacted her in a positive way. She credits her desire to help others with her appreciation for the way her community often reached out to support Jesse and their family. Emily also has found that having Jesse as a brother has pushed her to look for the best in people she encounters, because as she says “we’re all people, we all have the basics”. Regarding Jesse specifically, Emily made it clear that she “can see past these things he’s done in the past because it’s not his fault.” Her ability to see beyond Jesse’s symptoms and still love him as her older brother was inspiring to us all.

Claire

1 Household, 2 Perspectives

About a week ago we met with a family in the suburbs of Atlanta. The mother adopted  their eleven-year-old daughter when she was four years old from a special needs orphanage in Nicaragua.  Their daughter has a non-malignant tumor in her cerebellum that affects motor and cognitive functioning, variants of the Dandy-walker Syndrome, traumatic brain injuries from early childhood, and a brain atrophy from malnutrition from before she went to the orphanage. Although she has no behavioral issues, her IQ is very low and she functions at a kindergarten or 1st grade level academically. We spoke with all three of her siblings, two of which are step-siblings. I (Ellie) will be covering her full sibling and Claire will talk about one of her step-siblings. The first daughter we spoke with is 7 years old and, as her mother described, at the opposite of the intellectual spectrum as her older sister. She is part of the talented and gifted program at her school and functions at levels beyond her grade level in school subjects. When we asked her about her relationships with her step-siblings, she was very detailed and animated in her descriptions of how they interact together. However, when speaking about her older sister, she was less articulate and unsure of how to depict her relationship with her. She told us that, in referring to her sister, “she sort of understands stuff I say” and “she reacts different than me and I don’t really know what to do.” She said that “it’s different” to play with her other siblings than it is to play with her older sister. “She has a different life sort of and I don’t really know what to do,” the seven-year old told us.

The mother of the family assured us that this seven-year-old will not be her sister’s caregiver later on in life. In contrast to the other child interviews that we have conducted thus far, this girl did not have unwavering positive attitude regarding her sister, which is something I identified with. It was clear from our interview that she doesn’t regard her older sister with buckets of love and compassion and she still isn’t completely sure how she fits into her life. Though so young, she is still figuring out how to even talk about her sister, something I am still having trouble doing. I think that it is important that we have more of these diverse interviews, those that push us to think harder, widen our information pool, or even make us uncomfortable. From this interview, we can really see how sibling resources are vital, so that girls like this one can learn to talk to people about their siblings and gain support from those that understand her.

As Ellie explained, I will be blogging about the 12-year-old stepbrother in this family, who I'll be calling Peter in this post. I want to start by saying that Peter was certainly the most mature, thoughtful, and thoroughly kind 12-year-old boy I have ever met. We'll never know if Peter was naturally this way or if his experience as a sib had shaped him in this positive way but it was clear to us almost immediately how much time Peter spends thinking about his stepsister.

At first, when we asked Peter to describe her, he noted that she was extremely kind, happy, and was able to get along well with people, a trait his other sister also noted. However, later when we asked Peter about if he ever worried about her, he noted that he often envisioned her as a wounded gazelle, in his words "she is hurt but she can still fend for herself". Renee, Ellie, and I were all blown away by this thoughtful response as we had all been expecting a much less colorful yet accurate response than that.

Despite the fact that the siblings don't talk to each other that much, Peter told us that he would "hug her every now and then" and would help encourage her to socialize with her sisters and with her classmates. When we asked Peter a general question about the future, he quickly made it clear that he already thinks of how he will continue to support and encourage his sister as they both age and mature. As with most young sibs we've talked to, Peter had not spent much time talking to other sibs about his experience, though he did tell us about his friend at school whose younger brother is in Peter's grade and has a disability. Peter told us that he's very good at including this boy, whom he considers to be a good friend, and always makes an effort to sit with him at lunch and socialize with him in general. I don't want to over do it in my praise of Peter, but there certainly weren't that many 12 year old boys at my school that made an effort to include kids who struggled more socially so his tale of inclusion definitely warmed my heart.

We always close each interview by asking the sibs to tell us one question they would want to ask other sibs. Often, sibs ask Ellie and me to share our "sib story". Peter surprised us by asking the following:

"What would it like to be Mary* for one day, how would it be to think like her or just be like her, to think like her, to see like her, to see everything in a positive way but still not be able to do that thing?"

I am so grateful for the opportunity to have met and talked with this young man and to have gotten the chance to hear his wise-beyond-his-years comments about his relationship with his special sister.

Ellie and Claire

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

Wise Words from a Recent College Graduate

We were lucky enough to obtain the answers to some of our questions from a recent Princeton University graduate who said she felt comfortable with us posting her answers to our blog. Especially interesting to me in these answers is the overwhelming presence of guilt felt by this student. This is is something I hope to be looking into more thoroughly as our trip continues. ~Ellie

Below are her responses.

Tell me how it feels to have a sibling with special needs. 

I have a mixture of feelings about having a sibling with special needs. In many ways I have learned so much from Billy, and he has enriched my life in many ways by making me appreciate things that I otherwise probably would not notice. But at the same time I've always felt some level of 'survivor's guilt', particularly because statistically speaking it should have been me who had Down syndrome (my Mom was only 31 when she had my brother and 37 when she had me--the likelihood of having a child with Down syndrome increases with age). I've always felt that if I could, I would give Billy some of my intelligence so that we could both be average, rather than having him with special needs and me at an Ivy League school.

Tell me what it's like when everything is going well. 

When everything is going well, Billy is happily listening to the radio or watching Disney movies. I'm baking him cookies and my Mom's stress level isn't too elevated (it's always high up there though, she's said that she feels like she has to think for two people).

Tell me about a time that was particularly difficult for you. 

Two times come to mind that were difficult, one being when my brother had a seizure in the car and another when I learned that people with Down syndrome are more likely to develop Alzheimer's disease than the average person. For the first, my family had woken up early to drive to an admitted student day at Boston College, and my brother had a seizure in the car just as we were driving back into our hometown. It was very scary trying to hold his head still so he wouldn't hit the window while my Dad drove us all to the hospital. The doctors told us that because we had changed his schedule by getting him up so early, his epilepsy medication wasn't doing exactly what it should have. I felt so so guilty and was extremely upset. And the second instance was a very jarring moment for me, emotionally and academically. I used to think I wanted to study Down syndrome, and learning that in a class made me realize that studying Down syndrome would be very, very difficult. It also threw me into a period where I very much questioned the goodness and presence of God.

In what ways is having a brother or sister with a disability complicated? 

I'd say that it's mostly logistically complicated. For example, last week was graduation at Princeton, where there are multiple days of celebrations and parties that friends and family come to. But my brother doesn't do great in crowds (he walks slowly and would likely talk during the ceremonies), so he stayed home with our trusted family friend. But my Mom was stressed the whole time, and my family drove home every night to take care of Billy where most families just stayed in Princeton the entire time. I know it was taxing on my family and I feel very bad about that. Having Billy in my life also sometimes makes me wonder if the career path I've chosen (biology research) is really my own desire, or some sort of reaction to guilt I feel about being normal. 

What are your goals for the future for yourself? For your sibling? For your parents? 

I'd like to be either a biology professor or work in research either academically or in industry. I'd also love to write science books for children. Personally, I hope to get married and have children and all that jazz. I'm my brother's legal guardian should anything happen to my parents as well. For Billy, I hope that he stays healthy for a long time and that he never gets Alzheimer's disease...I really think that would be too much for my Mom to endure. For my parents, this is perhaps cruel to say but I hope that they both outlive Billy. My Mom puts a lot of pressure on herself to take care of my brother perfectly, and she deserves some years to put herself first. 

Tell me some strategies that you use to cope with the challenges of having a brother or sister with special needs. 

I think burying my nose in books was always a way to cope with a number of things in my life. And I think choosing a career path where I can help people who suffer makes me feel like I am fulfilling some sort of purpose.

How has your relationship with your sibling changed or not changed over the years? 

When I was very little I didn't really understand much. I had a little book called 'My Sister is Special' which explained Down syndrome in terms that a child would understand, and it's a book that's very dear to me. I used to wish that I could play with my brother the way other kids played with their siblings; now I wish that I could have a conversation with him.  Nowadays I understand the science much better. I understand that you can't simply cure Down syndrome. But I'm hopeful about a lot of the research being done...not for my brother's life but for others in the future.

How does having a sibling with special needs affect your plans for the future?

For me, it has defined my academic and professional path a great deal. Personally, I know that at it's possible that Billy will be mine to care for someday. I worry about being able to do things the way my Mom and Dad would want. I know they've set aside money to put him in a group home or pay for a live-in nurse, but I really don't know what I'll be comfortable doing yet. It's something that lingers in the back of my mind, and whenever something happens with my brother (ex. a seizure) I get very emotional and start to wonder about the future. I wonder how my own future children could be impacted by having Billy in the house. I wonder how he would be treated in a group home. It's a lot to think about.

Has having a special needs sibling shaped who you are as a person?

I think I'm much kinder and more thoughtful. I'm grateful for the simplest things, since I know how lucky I am to be able to do things like walking and talking in sentences. I've never been one to drink or do drugs, because I would never want to harm my ability to think optimally.  

How has having a sibling with special needs affected your social life growing up? 

I think having Billy in my life made me grow up faster than other kids, and that personality difference definitely shaped who I was friends with and what choices I made. I tended to hang out with people who also were very motivated...I was always friendly with the popular crowd, but not included. I don't think this was actively because of my brother, but I think I was perceived as a nerd who didn't drink and therefore wasn't super social. I was focused on academics and extracurriculars, and found friends who were similar.

An Evolving Bond

My phone interview last night with Mary* was an often inspiring tale of the potential bond that can develop between "normal" and "atypical" siblings. Mary, the only girl in her family, looked up to her older brother who is currently attending medical school but often worried for her younger brother Tom*. In first grade, Tom was diagnosed with PDD, and from then on, her brother's disability has been something that her family must come to terms with and learn to adapt to. Mary impressed me again and again with her ability to see the bigger picture about her family, noting that having Tom as a sibling has allowed her to realize "what is really important and what is just less important" and to gain a sense of perspective about her family's challenges. Mary has certainly evolved in both her role in her family and her thinking around her brother. She described how "when I was 6 or 7, I didn't quite know how to interact with him" and how that uncertainty eventually led her to act more in a "motherly role, helping him with homework"  or "helping him calm down if he was freaking out". She described one poignant scene during 3rd or 4th grade where she was supposed to go find her brother at the end of the school day to head home. When she walked into the office, she saw one of her friends who hurriedly told her that her brother was currently in the midst of a temper tantrum. I can only imagine the amalgamation of emotions running through Mary at that moment. However, when she reflected on these sorts of experiences, she noted that they have "made me a much more compassionate, aware person having gone through this. [...] It has taught me not to judge people who behave differently from me or that behave differently from your normal person. I definitely sympathize with people whose siblings are a little different and I really admire what other people do for their families". One of the things I appreciated most about Mary is that she extrapolated her situation to any family, noting that her behavior is representative just of "what you do for family". Specifically, Mary described the mental shift she had to make to realize that "he has his own developmental path and we have to help him at the speed he's comfortable with."

It is this tight family unit where her brother Tom has really been able to grow. When describing Tom, Mary pointed to how much more comfortable he is around close family friends than around other students or acquaintances. She describes how unfortunately, when he's with others, he keeps most of what he's thinking inside of him because he worries that the average person wouldn't understand him or wouldn't want to listen. Lucky for Tom, he has a sister who not only is willing to listen but also has glowing reviews of Tom. When reflecting on his personality, she told me that "Tom's just a really sweet kid. He's very kind, he's very considerate it just makes me grateful to have him as a sibling".

However, Mary's path  was not without its own challenges and speed bumps. At one point during the interview, she described a year when Tom was truly struggling in school as well as socially. This rough patch meant night after night of tantrums and a house full of tears rather than laughter. During this year, Mary struggled to avoid crying herself, often spending time in her room simply at a loss of how to help her brother out. While she and her family have definitely made it past this struggle, it is clear that Mary feels much more comfortable talking about her brother's triumphs than his struggles.  She describes how when she talks about her siblings to her friends at college, she "felt more comfortable talking about her older brother since I knew everything was going well". When she did talk about her younger brother, she "would never explicitly say what exactly was different about him but kind of emphasized that he needed a lot of help from my mom". Mary's story speaks to the wall of silence that many sibs feel between themselves and others when it comes to talking about their sibs. Since a sibling with special needs can be a complicated subject, we sibs sometime skirt the issue in order to avoid an uncomfortable interaction with our peers. However, at the end of her interview, Mary made it clear that her goal is to fight this instinct in the future. She told me that "the best I can do in terms of spreading the word about disabilities is to just not be afraid to talk about it". I wish her the best in that and in all of her future endeavors!

Claire