developmental disability

Ciara

Ciara is a wonderful, intelligent, and aware 14 year old. She's the middle child and has two siblings with developmental and physical disabilities. Her older brother has autism and she describes him like a "big, gentle giant"  and a "teddybear." Her younger sister is 12 and has epilepsy. She is closer with her younger sister than she is with her older brother, explaining that she and her sister "just click". There's often a newfound sense of annoyance towards immediate family that comes with being a 14-year-old, but Ciara didn't exhibit any of that. Instead, she makes time every week to spend with her siblings, watching TV with her sister and a Disney movie with her brother.

As a young child, she had moments when she felt embarrassed to be around her siblings in public. Despite that and other social challenges, her friends know and appreciate her siblings. Here she explains how they have affected her socially: 

What stood out the most to me was Ciara's ability and willingness to be an advocate for her siblings. This isn't unusual to sibs, but Ciara exemplifies such passion and charisma at such a young age. She's thoughtful, well-spoken, and educated about how best to campaign for the disabilities community.

"I've always been a big advocate for special needs because a lot of people don't know about it". When she was younger, her motto was "If you stare at them, I glare at you."

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

Wise Words from Adults

One of the cool parts about the interviews we've done has been the range in ages among sibs. We've talked with people our own age, with some younger children, and with a few adults. Though we have loved talking to everyone and are so appreciative that people are willing to open up to strangers, we are especially appreciative of the adults who have reached out to us because their experiences are able to provide us with crucial perspective about how the stigma around having a disability and the experiences that come with being a sib have evolved over the years. We spoke with an adult in North Carolina who was originally from Canada and one of fi children. He shared that when his younger sister was born with Down Syndrome, the practice at the time was to either institutionalize the child or put them in foster care. His family chose the latter option, which meant that his sister was living in another home with a foster family. Though she was still part of the family and they visited frequently, it was confusing for him as a child. His wife observed that all of his siblings have chosen a helping profession and that it might be related to having a sister with a disability.

One of the women we spoke to has an older brother who is developmentally delayed. As a nurse, she did one of her rotations at a state school. She was horrified by the quality of care she encountered. According to her, many of the men there with intellectual disabilities were forced to be the caretakers of the other individuals at the facility. That experience helped her appreciate how fortunate she was to have her brother living with her family at home and provided us with an important historical perspective for understanding the relationship between adults and their siblings during their childhood.

Although the services offered for individuals with special needs and their siblings and family aren't perfect, these interviews, along with Karen's interview (found here), have allowed us to appreciate how far services have come. They've been able to provide important insight into how sibling relationships can evolve over time. Karen, for example, didn't have a great relationship with her two siblings growing up - they loved each other, but they often didn't show it and weren't very affectionate - but now that she and her siblings are older, their relationships have transformed into more affectionate and closer ones. Many of the younger sibs we've talked to have expressed fear or concern about future plans for their siblings when their parents can no longer support them. Talking to older sibs has allowed us to have a better idea about what lies ahead.

Renee