South

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

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