female sibling

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

Another Definition of Primary Caregiver

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

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

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

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

Quotes from our online interviewees

Early on in our journey, we realized that we most likely would not be able to interview everyone who reached out to us. Some people were out of town when we were in their city or lived in a city that was not on our route and so would be out of our reach. However, we didn't want to prevent those people from being able to express their feelings about being a sib. So we created a "Share Your Story" tab on our blog with the hope that people would fill out the online form with information, anecdotes, and raw emotion about their own sib story. And fill out, they did! This post will be composed of short tidbits from each sib who has completed this form. Hope y'all enjoy their colorful and honest tales of growing up with siblings with various disabilities and differences.

***

Rebecca from Lexington, MA -- one of 9 children, has a brother with Down Syndrome who is 44.

"Probably the best memory when we were children was bringing him to Special Olympics. It was so amazing and mind blowing to me to see him accepted and part of a group. And, he competed so vigorously."

"I find it shocking to think I really don't know other siblings. (other than my own and we are a great support for each other). I have never had support services, but think that Special Olympics has contributed a lot to helping generate a good perspective."

"The hardest thing about having a handicapped brother is not the handicap. It is the social rejection. However, I think the world has changed so dramatically. I can hardly describe the contrast between when I used to take him places when he was small and now! The ADA has had so much impact in changing social values.  I hope society will continue in the vein, being inclusive, and accepting, and then the "burden" will be so much less so." 

***

Helaine from New York City - has a brother with schizoaffective disorder and Aspergers who is 29.

"However, when he was 21, he began to have outbursts, often violent episodes, in which he would wake up in the middle of the night screaming, and often punch or push my parents. My room shares a wall with his, and so often I was startled when he woke up at 2 or 3 am, and could not go to sleep fearing that he was going to hurt my parents (he has never touched me during an episode.) It was, for lack of a better phrase, scary as hell. However, I was told that what happens in the house was nobody's business...and as a 14 year old, I didn't think twice about that." 

"For YEARS my parents yelled at me for being "snotty" to my brother in mixed company, but for me, that was my way of acknowledging that my brother and our relationship was not normal. As a 14 and 15 year old, I couldn't articulate why I had so much trouble being nice to my brother. But now I can say that treating him nicely would have been going along with my parents and putting on a show. My parents have been so keen on keeping the severity of his mental illness a secret, but after some time holding it in became too much for me."

"There are very few people I feel comfortable talking about my situation at home to. But I definitely do feel the closest to my friends who know, and always feel as if I am holding back a huge part of myself from friends who don't."

"I was happy to get out of the house for college four years ago, but the transition between college and home each winter and summer break was always difficult for me. At school, I was progressing, growing, having a great time. But then I'd come home and be reminded that nothing is ever going to change for my brother, and also be reminded that he can be violent at times. I felt bad for him, for my parents, it just made me sad."

"I graduated #1 out of my 732-person high school class, and that the "me" my parents saw, I couldn't tell them what I was really feeling underneath. In the past few months, I have been trying to discuss with them the impact my environment has had on me, but so far no good. However, now that I am starting to talk about this more to others, I hope to ultimately be able to get through to them."

"I just told you all of this to express to you, as a sib, that I feel how a parents handle their son or daughter's disability can greatly impact how the sibling feels. I do feel that my parents do everything they possibly can and more for my brother; however, I think they've neglected to realize how much of an impact living with my brother has had on my life."

***

Jill from Nazareth, PA - has a brother with Down Syndrome, autism, celiac disease, epilepsy, a heart condition and other medical issues who is 20. 

"I have many positive memories of Kevin. Kevin loves going on amusement park rides and I referred Kevin for the Make a Wish Foundation. Kevin got a wish to go to Disney and my family went to Florida in May 2011. We had a fantastic time and I have never seen Kevin happier. I felt blessed that I was able to help get that opportunity for Kevin."

"As a child, I remember trying to always be perfect so my parents wouldn't have to worry about me. This has carried onto my adulthood and I have anxiety due to always trying to be perfect. I have taken a lot of the responsibility for Kevin and I am almost like a second mother to him. This can sometimes be very negative as well as positive."

"I have been very upfront with my boyfriend and told him as soon as things started getting serious. I told him that I come with this baggage and one day I will be in charge of Kevin when my parents can no longer take care of him. My boyfriend was interested in moving about 3 or 4 hours away and working on a farm. I told him that I can't because I wouldn't want to be that far away from my brother. I have this guilt inside of me that I feel it would be wrong for me to move that far away."

"I understand that things could always be worse and to appreciate things in a different way. I have a connection to the special needs community. I am proud of Kevin and am amazed everyday by him. I have a hero who is my brother." 

"I think it is important that young siblings would be reached out to and know that they are not alone. How they may be feeling is normal and they should be able to have someone to talk to."

***

Erin from Wrentham, MA - has a sibling who is mentally and physically disabled and is 14.

"My little sister is my whole world. That is pretty much the only way I have ever described my relationship with Shan. We also have 2 older brothers that show up when they feel like it but for the most part are not around for her or for me. At this point I am Shannon's other parent. My father passed away 3 years ago leaving my mom and I to make sure Shannon is ok. This has been a change in that if my mom is not around I am the only other person there for Shan."

"Pretty much everyday with Shan is positive. You can't help but be happy when Shan is with you. When you walk in she gives you a hug and barely ever stops smiling. That's not to say internally I haven't had negative struggles."

"I would want to know if they receive support from their other siblings with their sib be able this has always been the thing that bothered me most."

***

Ellen* from Boston - has an older brother with PDD- NOS who is 25.

"However, as we entered our teenage years, my relationship with L started to get really strained, as he just seemed to not be motivated or (in my opinion) trying hard enough to grow up and stop letting my parents make decisions for him or help him with things I assumed he should have been able to do on his own by that age."

"Our relationship today is still rocky at best - as bad as it sounds, we seem to get along best only when we're not around each other...I guess when we feel like we miss each other is when we actually appreciate our siblingship."

"In fact, I think some of the issues in our relationship come from the resentment I had for a long time with what I viewed as my brother's "refusal" to be normal, coupled with my parents' "refusal" to admit that there was something "wrong" or "not normal" about my oldest brother. I was confused about why my brother would act so anti-social or childish when my parents never clearly stated that there was anything different about him. And when it got to the point where I realized some of my brother's behaviors were just too odd to be by choice, I was really frustrated with my parents for trying to pretend everything was normal when it wasn't, and I think I projected a lot of that frustration onto the relationship between L and I."

"One positive thing about having a sibling with a disability is that when they succeed at something, everyone comes together to celebrate. A particular instance of that for me was when my older brother finally finished his college requirements and earned his degree after almost 7 years of classes. Getting to join in his joy at seeing himself succeed at something he'd been working at so persistently alongside the whole family was a great moment. "

"Particularly for Thanksgiving dinner - my parents love to have guests over, but I'm always uncomfortable through the whole meal because my brother talks extremely loudly and dominates the conversation with ill-placed jokes and obsessive sports talk, and he refuses to eat anything other than peanut butter sandwiches for dinner which always takes some explaining to guests when there are trays of delicious food in front of him"

"I also don't talk about my brother too much with those who don't know him, because I honestly don't know how to explain him to other people."

"I've really been drawn to this population since I was in elementary school, and right now I'd like to go on to become a school psychologist after college because it would give me the opportunity to work with students with special needs and various psychological and developmental disorders."

"However, as selfish as this sounds, I don't WANT to have to take care of my brother - I always catch myself thinking that he's the older one, so if anything he should have to take care of me."

"Even before I knew the technical name for my brother's condition, I think I was better able to empathize with families we saw out in public who had children who were visibly or seriously disabled and didn't get annoyed or upset when those children started behaving "strangely" or were having a rough time. Being a sib teaches you that people are different and that that's just a part of life."

"Even since I found out about my brother's diagnosis, I've always viewed sibs from an outsider perspective - I rarely equate what my life is like to that of the sibs I know whose siblings have more severe autism diagnoses or other disabilities. I think that's just because for so long I didn't know for sure whether or not I WAS a sib myself, and now I'm just stuck in the mindset that I'm not."

"I feel like, from my skewed perspective, more support services or counseling groups could be made available to sibs of individuals with high-functioning or mild forms of disability - I guess, sibs like me who feel like they're walking the line between normalcy and disability and aren't really sure where they or their sibling/family fall.

***

Sophie from New Jersey - has a twin brother with Autism who is 22 and an older sister with Rhett Syndrome who is 26.

"I was always close with my brother and sister, especially my brother. However, it was mainly behind closed doors. Growing up, I did not feel comfortable talking about them, or integrating them into my life other than when I was at home. We always watched movies together, and my brother and I used to play all sorts of games together, and go on hikes in the woods. I really was close to them both in the confines of our home or when we were with extended family. "

"My brother and I are extremely close. It's partly because we are twins. I feel that I understand what he's thinking most of the time, and I feel he understands me as well. They say that people on the autistic spectrum have trouble interpreting faces and understanding others emotions, but with me, I find he's the first one to know when I'm upset or angry, or just feeling down. He'll come snuggle with me. He just knows. "

"There are also times when he really frustrates me though. He does something called "silly talking." All the time. He just talks and talks and talks. He repeats commercials from his child hood, songs from his childhood, lines from movies, Sesame Street songs, and noises that I have no idea what they are. And he'll do this in public, in silent movie theaters, silent broadway shows, in crowded rooms. It seems like he makes sure he is the loudest sound in the room. And it drives me crazy even to this day."

"With Annie, we weren't as close in my childhood. It was harder to be. She cannot speak and she cannot walk. She understands what we are saying, but she is essentially trapped inside a body that does not do what she wants it to do." 

"I vividly remember going to a show with my family. It was a very quiet point of the show, and all of a sudden I hear a gargling noise. It's my mom feeding her through her feeding tube in her stomach, in the middle of a show! I wanted to disappear. I used to deal by staying silent and suppressing my feelings. Sometimes, I'd tell my parents about how was feeling, and would feel guilt for the feelings I was having about them and would stay silent most of the time. When I was embarrassed in public, I'd escape the situation, and run away. If someone stared at my siblings, I'd deal by glaring at them back. I was very selective about who my friends were when I was younger, and who could come to my house. (I even feel guilty writing all of this now) Things have gotten easier for me, and I recently started to see a therapist to talk about what it has been like growing up with 2 siblings with special needs."

"I honestly do not know too many sibs. I know one. Her brother attends a program with my brother and we together with our families have dinner on Monday evenings. This only started recently, and we really do not talk about our siblings, we just play and hang out with them together. Looking back, I truly wish I had a group of sibs who I could reach out to and could understand me."

***

Thanks to all of our sibs!

Claire

“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

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."

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

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

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

Seven Going on Seventy

In New Orleans, we had the great fortune of meeting with one of the kindest, most caring, families we have met thus far. This Louisiana family has 4 children, 3 of which are triplets. One of the triplets has autism, ADHD and a seizure disorder. The triplets are seven. Claire and I spoke with the two triplets while Renee spoke with their parents. Very early on into the conversation, Claire and I realized that we were speaking with some very special children. We began our discussion with the two by asking them to describe their sister. “If you didn’t know her, then I am sure she would make you happy. She would make you laugh,” one of the boys told us. These two showed us true compassion and charisma. Let alone the fact that they have not even begun second grade, the two boys spoke of their sister with the eloquence of men much more weathered with age and wisdom. They told us about how much they care about her and how they feel when they are apart from her. Even at such a young age, they depicted how they worry about her when they are not there to protect her. “We worry a lot. Like, if [we’re] in a different place, even across the street. [We worry] that she could get hurt, or bullied and we won’t be there to help her.” We asked them what it looks like when they stand up for her. “If she’s getting bullied we take up for her.” Wise beyond their years, and even though they expressed wishes to “punch [bullies] in the face,” they use their words to stand up for their sister, and merely explain that she is special. They are truly her greatest bodyguards. Though she has separation issues, it must be wonderful for her to know that she always has these two young men standing behind her with commitment and love.

They also spoke to their family dynamics and how all three of them interact. We asked them if they fight a lot. They quickly assured us, “we’re not trying to fight, we’re trying to tell her, so she can learn.” It appears that many of the activities the boys enjoy, they try to also invite their sister to join. “We love to ride bikes with her. She doesn’t really know how yet so we like to help her.” They told us how she cheers them on at their baseball games and how happy it makes them to see her in the stands. They are proud when she is proud of them.

Part of a family that revolves around family time and togetherness, these two boys truly understand the meaning of family commitment and undivided love. Though, they assured us that they choose their friends wisely. “We have good friends… that are our friends and her friends.” They, like the rest of their family, accept, understand, and appreciate their sister and they want to make sure that the people they interact with do the same. For them, it’s a lifestyle. They brought up the fact that they are hurt when others bully or make fun of their sister. “Boys and girls, and especially adults, don’t know how she is. They don’t know she’s special, what’s inside,” they told us with utter sincerity. What was even more incredible about these two boys was that, though many sibs we have spoken with are embarrassed by or ashamed of their siblings, these two don’t hesitate to stand up for her in any situation. They spoke of an incident on Christmas Eve at church where a woman became very aggravated when their sister was having a fit. She told them that she would take their sister outside and spank her because “she was trying to learn about G-d.” They spoke with astute insight about the incident, recognizing that accepting and embracing their sister is a part of being a family, which is, down to the core, what they are.

From this inspiring family, we learned about the power of true acceptance and familial devotion. From speaking with these two young men, we learned about the potential of the innocent and the vigor of fellowship. The whole family is so incredibly open about their situation as they wake up each day not condemning or complaining about the hand they have been dealt but taking it on with full speed, preparation, and fidelity. I can only aspire to be as kindhearted and thoughtful as all of them are every day of their lives.

“We always love [her],” they told us, and it is as simple as that.

~Ellie

My Conversation With The Parents Of Our Two Little Sages

After talking for just twenty minutes, it’s clear how one little girl ended up with such loving, caring, and protective twin brothers.  When I initially inquired about their daughter’s diagnosis, they explained that though she has mild Autism, a seizure disorder, and ADHD, “it’s just the way she’s always been,” according to Dad. Unprompted, Mom continued, “It’s who she is and I wouldn’t really change it if we could because that would change her. Obviously, it’s difficult at times, but I think we’ve learned a lot of lessons along the way.” Their language provided me with a small window into their parenting approach. Not once did they attach the word “disability” to their daughter. She has a diagnosis, she has strengths, she has weaknesses, and she has a distinct personality, but she is not defined by her disability.

That attitude has carried over into their children, particularly their two sons. The four siblings interact like normal siblings would, fighting at times, yet always loving one another. Dad says “they all have a special affinity to look out for her and care for her.” Though the children all know their sister’s diagnosis and her challenges, they look past all of that and focus on her personality, which has been much stronger recently since her language skills are improving. The boys know she loves Justin Beiber, like her older sister, and that she loves to be social. Their parents have taught them that everybody’s different, that “everybody’s got good things and bad things and [they shouldn’t] single people out because they’re different.” As one of the twins says frequently, “Her brain is different than ours.” Thanks to this attitude, the family doesn’t hold back on activities just because of their daughter’s diagnosis. They go to church together regularly, go out to dinner, and even attend the boys’ sporting events and their eldest daughter’s dance recitals, just like any other family would. They’re “not going to use [her diagnosis] as a crutch” and they’re not going to hide anything. They’re not ashamed of her daughter, only proud. Their mother told me, “I’m the kind of mom where I would tell the whole wide world because I would rather people learn about it. We just feel like by talking about it there will be a better understanding because it is who she is.”

Though the twins are only seven and their oldest daughter is only twelve, their parents have preconditioned them to understand that one day they will be responsible for their sister, and it’s something the siblings have embraced. The boys are still very young and aren’t entirely aware of the choices they will have to face in the future, but given their current bond with their sister, I feel confident that they will remain loyal and protective brothers. One of them once said,  “Mom, one day when she’s living with me, I’m gonna paint her room pink because that’s her favorite color.” I find the bond that these boys share with their sister incredible and inspiring. They’ve learned from their parents that each person has his or her own range of abilities and that everyone deserves to be loved and included in the community.

-Renee