Mental Illness

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.

“it’s such a hard thing to explain, anyway, because, there’s no word, like ‘she has this or that’”

Over the course of the past two months, I have become very conscientious of the role that language plays for me in my life. Language is the basis for most of my communications, simple and complex, and provides me with stepping stones that lead to paths that lead to decisions and my growth. So what happens when language is not an option?

Before my sister was diagnosed as on the autism spectrum (Pervasive Developmental Disorder-Not Otherwise Specified/PDD-NOS), I faced many challenges associated with describing her to people. Of course, I could always spew out her learning disabilities but those never came close to depicting and illustrating her intense behavioral issues that defined life at home. Now, even though autism does not explain her in the slightest, at least I have a word to use that the general public is fairly familiar with. We spoke with two college students in California who do not have the luxury that I now have when I describe my sister to people. Interestingly, all three of our siblings share common ground behaviorally. We spoke with Mike* and Emily* who both have middle school-aged sisters. Mike’s sister is a 13-year-old twin and has been diagnosed with depression but is currently undergoing a new diagnostic assessment relating to her behavioral problems. Emily’s sister is also 13. Her sister was adopted when she was 2 from Russia and has many learning disabilities, processing issues, and attachment difficulties.

Both Mike and Emily talked in great detail about how hard it is for both of their families to constantly struggle with household peace. “All of the behaviors she has are like relatively normal things. If they happened once,” Mike said, “but because they happen so many times, they end up having this huge impact.” He told us that his family has given up on the concepts of family dinners or vacations due to his sisters rages about minute details (like specific foods at the table or not being able to see because someone was in front of her). Emily talked about how high school became increasingly difficult because she was unable to do her schoolwork due to the constant screaming and tantrums her younger sister still throws.  They both talked about the maelstrom that has been growing up with their sisters because of such intense behavioral problems.

How can a sib describe their sibling when they don’t have a name to quantify or qualify the amount and extent of their siblings’ behavioral difficulties?

“How much of this is actually some diagnosed thing? Where do you draw the line?” Both Mike and Emily discussed the dubiety associated with trying to figure out if their sisters’ behaviors were due to cognitive issues or their sisters’ personalities. When the two of them have tried to explain their household chaos to others, they literally find themselves at a loss for words. “People don’t get it and they judge me for being mean to her,” Emily observed. “I always feel like a bad person for disliking her so much… and it affects how I view myself now.”

“It was both frustrating and scary. Because on the one hand, I was like I don’t want to be like her, but at the same I was like, well if I feel the same way as she does about all of these things and I manage not to destroy our family, I don’t know why she can’t do that.”

These interviews brought on something we hadn’t quite encountered yet on our journey. How can sibs identify as sibs when they themselves don’t even know what is truly going on in their sibling’s minds? Though I strongly believe that diagnoses and epithets have drastically changed the face of the disabilities world in a multitude of positive and negative ways, I do believe now that, at least for sibs, there is some comfort in being able to have a piece of language that begins to identify the complications that go along with being a sib.

*Name has been changed

Ellie

Family is Family

When Catherine was 9 years old, her family adopted her younger sister, Jessica, who was 6 at the time. Jessica had been living with her for a few years prior as her foster sister. Jessica is on the autism spectrum, but is high functioning and currently living independently. She has PTSD and a few other diagnoses. Catherine's story is an example of the difficulties that often occur with adoption. "She is really hot and cold with people. She loves you one day and hates you the next day.She just doesn't care. That makes it difficult for her to get along with people and just have stable relationships."

When she was younger, Catherine took on more of a parent role instead of a sibling role. She wanted to protect her sister since she had been through a lot of trauma in her early life. As a result, they never built a close sister relationship. As they got older and closer to their teenage years, they became a bit closer and friendlier. They never had a very good relationship.

Catherine sounded a bit remorseful and sad as she explained how her family hasn't been in close contact with Jessica for a while now. Jessica has been to several residential treatment centers, which didn't work out, so she is currently somewhere in Kentucky, but her family isn't sure where.

"You never knew what you were going to get" seems to be the phrase that best describes Catherine's childhood. All of her friends knew that going to their house could be a bit crazy. "She is explosive sometimes, and crazy and violent. You just never knew what was going to happen when you came over to my house." She spent a lot of time away from home because of that.

Nevertheless, she always felt as if she needed to be looking out for Jessica, and that trait has carried over into her adult life. "I always put others ahead of me and my own experiences and that isn't really healthy."

As far as plans for the future go, it is going to be up to Jessica and how self-motivated she can be. "At this point we've forced so many resources into her and she's gone to four different residential programs now... She doesn't even want to participate and make positive changes, so its just kind of disheartening for my family to see that and to know that there's not that much else we can do until she decides things are bad."

Though her sister's adoption doesn't make her any less like family, it is a tough thing for Catherine's family to deal with. "Growing up, sometimes she would say 'You're not even my real family. Why should I listen to you?' Hearing that over and over...it was really tough... I'm sure she doesn't consider us her real family, whatever 'real' means." Catherine expressed how difficult it is to be there for someone who doesn't want you there, but no matter what, her family will always be Jessica's safety net.

Renee

The Queen and the Royal G-ddess

Our first day in Chicago, we were lucky enough to meet with the Queen, or at least that’s what her seven other siblings refer to her as they call her older sister, the Royal G-ddess. Nora Handler is a sibling of three brothers, all of whom have developmental disabilities. She is an avid member of SibNet, on the board of SIBS, speaks on many different sibling and disabilities panels, and is a published author. Needless to say, she had a lot to talk about. Something we found particularly intriguing about her story was the fact that she found sibling resources considerably late in life. She and her older sister only really got involved with the sibling support world after their mother died, just a little over a decade ago. “We consider ourselves, our family, the poster child for how not to do it, as far as future planning goes, because it wasn’t done.” She told us that she got so involved in this community because of one key lesson that she can teach other sibs. “I go around and tell this story so that other people will... get up the nerve and have this conversation with their family that they need to have,” because she and her other siblings did not have future-planning conversations until it was too late.

After their mother passed away at a young age, she and her older sister really took on the caregiver roles of the family. For the first six months, she and her sister would take turns driving hours away to stay at their mom’s old farmhouse where all of their brothers were residing. They, along with help from their other siblings, really worked together to begin the care taking process. 

Nora also spoke with us about the differences between a parental role of someone with special needs and a sibling caretaker role. She said that she and her sister were much more “able to let them take the risks that [their] mom was never able to let them take.” And, with the help of her husband, they began taking their brothers out more often, like to baseball games. “We think sibs will do that dignity-of-risk thing a little bit” more than moms will just because of the sibling dynamic. Though she and her sister “feel like moms,” she does recognize that there is a difference in her caretaking style from that of her mother’s.

In this next clip, Nora talks about how her family was not the “picture perfect” family and how hard that was for her after her mom passed.

Next, she talks about how hard it is to find other sibs, especially in times of need. 

Here, she describes what she would have liked to have had before she had taken on this caretaker role. 

That being said, it was clear to us that Nora loves what she does for the sib and disability communities right now. Though she relayed to us that humor is absolutely her coping mechanism for the hard parts in her (her words) “warped” family, braving past those difficulties to help this community find its words has helped a tremendous amount of people who have listened to her story. “It’s what I wish I could do as a job,” she told us. We wish that, too, Nora!

~Ellie

Our First Rural Stop: Oneonta, NY

One of the main reasons we are going on this trip is to diversify the records of stories available about sibs. For this reason, we know that we couldn't only stop in big cities and suburbs if we were going to get the complete picture on the sibling experience. With help from a friend of mine who lives near Oneonta, we decided to stop in Oneonta, NY to see the sibling experience from a rural perspective, far from the expansive benefits that are often available in large, metropolitan areas. After the beautiful, yet slightly rainy, drive from Boston to Oneonta, we had the great opportunity of visiting Springbrook. Springbrook is a school in New York that offers several residential programs for students in New York whose school districts are unable to accommodate them as well as day programs. They also offer group homes and other therapy and occupational readiness programs for people over the age of 21. 

We were welcomed at the school by Traci Lanner, the director of the Tom Golisano Center for Autism, and  Madeline Sansevere, the director of Community Services. School wasn't in session when we visited - students were on one of their few short brakes - but the facility was beautiful. They have classrooms of about 6 students each, with one teacher and three assistants. They implement different therapies in the classroom and also offer a variety of pull-out therapies for students who may require extra time or services.

We spoke with Madeline and Traci about our project and about the various programs offered in New York for children with special needs. They explained that New York has excellent services for individuals until they turn 21. School districts unable to accommodate the needs of students will pay for them to attend Springbrook. However, once students age out, the school has very little say in where the individuals may be placed and New York's adult services varies tremendously in quality. The staff and teachers care deeply about the individuals at Springbrook. Springbrook offers to pay for teachers to get their Masters degree in Special Education and they work with SUNY Morrisville to offer classes at Springbrook to make it easier for teachers. They also offer an online program through Endicott University (in Massachusetts).

Check 'em out: www.springbrookny.org

Next, we headed over to the Family Resource Network in Oneonta where we conducted another group interview with three woman, one of whom was only 13. Here are the basic facts about these women.

Meghann is the Executive Director of the Family Resource Network and has a 24-year-old brother with Trisome 8 (a genetic disability) and autism.

Heidi works with her sister who is developmentally disabled at the Main View Gallery in Oneonta which helps provide artistic jobs for individuals in the community that are developmentally impaired.

Manu is a 13 year old sib to one brother who has ADHD and bipolar disorder and another brother who has cerebral palsy, cortical dysplasia, epilepsy, and is non-verbal.

We had a fantastic interview with all of them in one room so we will basically let the clips speak for themselves.

As we have seen time and time again, sibs seem to have these incredible "old souls" that cradle maturity and insightfulness beyond compare. Below, Manu illustrates some of the turmoil that went along with her relationship with her brother.

One of our favorite questions to ask sibs is what their roles in their families were growing up and what they are now. It was interesting to see the range of answers we received from our three interviewees. From Heidi's job of "getting her to giggle" to Manu's role as advocate and future caretaker, we learned a lot from their stories.

Another question we always get a range of answers to regards how having a sibling with special needs affects sibs socially. Below are some their responses.

 Manu shared light on a phenomenon we hadn't truly fleshed out. Many of the sibs that we interview speak about striving for academic excellence in order to "make up for" their sibling's lack of abilities to do. Manu shared some of the issues that affect her personal academics because of the house that she lives in.

One of the main reasons we stopped in Oneonta was because we wanted to see a rural perspective on the disabilities community. We gained a lot of interesting information on what it is like to care for someone with special needs in a small, economically-depressed area. They talked about how difficult it is for people with special needs to gain access to jobs and healthcare. "The threat of being cut-off is always there," Heidi told us.

We are so ecstatic that we got to meet with all three of these amazing women in Oneonta and certainly learned a lot from them.

 

 

Ellie and Renee