young adult

The "Down Syndrome Advantage" and its Challenges

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

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

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

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

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

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

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

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

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

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

Renee

"They told me I was a classic sib."

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

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

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

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

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

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

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

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

Claire

A 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

"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

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