bipolar disorder

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

"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