male sibling

Back at it

Hello Sibs’ Journey Followers!

It has been quite a long time since we posted about anything, let alone an interview, but today I would like to reintroduce you to the foundation of Sibs’ Journey: Broadening the Narrative. Renee, Claire, and I have reopened the interviewing process and have been scheduling phone interviews with sibs from all over the country for the next few weeks. It’s a little bit different than driving to each interview together, but we’re having a lot of fun hearing and recording more sib stories.        

Last week, I had the pleasure of speaking with the lovely, Julie. Julie is 32, lives near Boston, MA, and recently received her doctorate in Psychology. Interestingly enough, the fact that I’m a psychology student myself was the smallest of our similarities. But, before I let this be about me, here is Julie’s story:

Julie grew up with an older brother, Jason. Jason is three years older than she is and functioned typically until the age of 9. At 9 years old, Jason had his first seizure. Soon, he began having twenty to thirty seizures a day. At 13, he went through brain surgery, which resulted in lasting personality and cognitive changes that began taking place over the years after the surgery. This shift –shifting from a typically-developing 13-year-old boy to one with cognitive impairments – posed an interesting role dynamic in Julie’s life. Because her brother had been three years her senior, he had reveled in the role of acting as her older brother. However, once she continued to develop and thrive, while he did not, their relationship became strained. Jealousy became a key player once Julie learned how to drive, and then, moved out of the house. Julie told me how difficult this was because Jason remembers what it’s like to be normal, to exist in a typically-developing world. That’s one of the hardest parts, she says, because he knows what he’s missing.

Because of this change in roles, and because of the engrained other diverse factors relating to growing up with a sibling with disabilities, Julie and her brother haven’t always had a smooth relationship. Julie told me how hard it was for her to “surpass” him in life achievements, and how challenging it was to bring her friends over and risk having to explain her home life – his seizures, his special diet, his behavior – to them. When I asked Julie what she thought her role was in her family growing up, she told that she was the one who “kept things going.” She was the responsible, problem-free child who didn’t break any rules. She talked about her conscious effort not to be seen too much.

However, growing up in her household has truly shaped Julie, especially in her career choices. Julie is a clinical psychologist who focuses on health psychology. She hopes to develop her own practice that “will focus on treating those affected by illness/disability in some way.” In fact, Julie’s dissertation centered around siblings of individuals who suffer from epilepsy, so she’s well-versed in the sibling experience. Even though when I asked Julie about whether or not she had interacted with other siblings growing up, or if she knew about many sibling supports available to siblings now, she answered that sadly, she did not, it was wonderful to hear about her own journey into the sibling world through her experience and her interesting research. She told me that she is going into this kind of work because she wishes that she had had more support in her growing understand of her relationship with her brother. She comes from an incredibly deep place of understanding and I can only imagine how much empathy and affirmation she provides to those with whom she works. An analyst at heart, her final question that she told me she would like to ask any sib, given the opportunity, was: What would you tell your child/teenager self knowing what you know now? Any advice for your young self?

If any of this is sounding familiar, it should! Julie’s story is very similar to mine, especially in her complicated relationship with her brother and her academic and career pursuits.  In the small – but growing larger in size and in power – sib world, it is always wonderful to speak with someone who can understand your story from a deeply personal level, and for that, I am so grateful to have spoken with Julie.

Siblove,

Ellie

Cosmic Injustice

A topic we haven’t talked specifically about yet over the past few months has been sibling amiability. In some of the interviews that we have conducted, there is this notion that the sibling that will be taking on the caretaker role later in life does not actually have an amicable relationship with his or her sibling and yet takes on the role regardless. We spoke with a young man, George*, in LA about this struggle.  George is a philosophy PhD candidate as well as a J.D. student at UCLA. He is eloquent and reflective and was a pleasure to speak with about his younger brother.  George’s brother is one year younger than he and has an intellectual impairment. In the beginning of our interview with George, it appeared that he and his brother had a pretty decent relationship. He said they fought a lot as kids, but most brothers do, and that he doesn’t think he was “traumatized” or “burdened” by the experiences he had growing up in his house.

Here is where his story gets increasingly interesting. George talked a lot about how he doesn’t think that his brother really likes him. He told us that if something were to happen to his parents and his brother had to move in with him, he would be okay with that situation but he doesn’t think his brother would be too happy.  He even told us that his brother has connected more with his friends and girlfriends and if his brother had to move in with him, he might have to use one of them as a mouthpiece while he acted as a “man behind the curtain.” He told us that his brother is “really good with people, just not me or my dad.” We tried to dissect this a little bit more. George told us that growing up his dad was always the disciplinarian in the house in comparison to his mom who focused more on providing a loving, calm household. George confided in us that he often sided with his father's view that manners should be stressed and healthy regimen should be implemented when possible. He believes that his brother is high-functioning enough to have had more responsibility than he did have growing up.

What’s fascinating about George’s story is not only how much of his life George is willing to alter in order to take care of his brother should that have to happen but also how hard George is going to have to try to gain some of his brother’s trust and try to make a relationship with someone that is clearly not interested in making a relationship.

His philosophy student self came through by the end of the interview when he concluded that the whole situation is really a “cosmic injustice.”

Ellie

*name has been changed

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

"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

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

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