male

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.

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

At the intersection of rage and reflection

During our Chicago visit, we had the opportunity to interview employees of access living. One is Scott, who is an amazing advocate for people with disabilities, especially in terms of securing them supports so that they can remain in their own home independently if they please. Scott is very motivated by his anger about the state of disability services currently. Scott is part of an army family and is a veteran himself. He has two siblings with some sort of disability. His brother was diagnosed with cerebral palsy at age 2 and his sister was diagnosed with dyslexia.

We always ask sibs if they think that their experience affected them at all academically. That question is based in our knowledge that many sibs become high achievers, either from a place of wanting to not take for granted their intellectual capabilities or a desire to be "the perfect child" for their parents. Scott quickly let us know that he did not fit the mold, telling us that he "passed high school by the skin of his teeth". However, he reminded us that it's important to not only think about maturity and growth in the academic arena. See below:

Anger is an emotion that comes up pretty frequently in our conversations with sibs. Normally this anger has something to do with either the behaviors that their sibling displays or their feelings of resentment that they didn't get more time as a child. Scott's anger was a different form all together, and was aimed not inside the family but outside its realm.

Scott used this phrase again and again, the idea that our society was wrong, and oppressive, and in many circumstances even awful. Here, he describes the problem with the diagnosis process for families, and the psychological harm that it could potentially cause because of the specific and recommended paradigm for coping.

Many of our Chicago sibs spoke of the dire lack of services in Illinois. Here, Scott makes the perfect metaphor of the level of struggle to secure the necessary supports for individuals with disabilities.

This made the perfect segue into Scott's professional life. Scott works for Access Living, an organization that helps provide the appropriate supports so that individuals with disabilities can continue living independently and not be moved into a nursing home or more institutionalized setting. Simultaneously, Scott volunteers with ADAPT --- taken from ADAPT's website --- "a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom." Listen to Scott describe ADAPT's past and current work:

Scott's story eventually took a tragic turn. His brother, while living independently, tragically died after attempting to clean up an accident he had made. Scott has so much justified anger about this incident. For months, he and his mother had searched for someone to come in to help his brother so that he wouldn't have these long periods alone. He details his struggle here in these next two clips:

I'd like to end his story with his description of his brother, simultaneously beautiful and so revealing about the importance of prioritizing independence for those with disabilities.

 

Claire

1 Household, 2 Perspectives

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

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

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

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

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

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

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

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

Ellie and Claire

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