Family ties, personal experiences inspire special education majors

UNIVERSITY PARK, Pa. — Special education is an immensely rewarding yet challenging profession that requires a certain type of passion as well as empathy for children with disabilities. Several graduate and undergraduate students in the Department of Educational Psychology, Counseling, and Special Education (EPCSE) in the College of Education decided to pursue special education careers largely due to personal experiences that inspired them to strive to make a difference in the lives of students with disabilities.

Defying expectations

Doctoral candidate Gwen Deger, who is originally from Bucks County, Pennsylvania, found her calling early in life in rather dramatic fashion.

At age 10, she accompanied her pregnant mother on a doctor’s appointment and after an amniocentesis was completed, the doctor informed her mother that the unborn baby boy had Down syndrome. He then recommended that she end the pregnancy because “he wouldn’t live past the first day.”

“I said, ‘How dare you decide whether my brother deserves to live or die? You don’t know him. It’s my mom’s choice whether she wants to have this baby or not. No recommendation you make is going to change that.’”

According to Deger, making that bold declaration was a defining moment in her life as well as the initial step of a lifelong vocation as a special education advocate.

Deger, who is one of 11 children, said she got the best birthday present ever when her brother, Samuel Peers was born on her 11th birthday and validated her assertion that he would defy the doctor’s grim prognosis. Sam is now 22.

“He surpassed all the doctor’s expectations, even from that first day,” she said.

Nonetheless, as someone with Down syndrome, Sam has limitations that required occupational, physical and speech therapy. For Deger, observing her brother’s treatments and seeing the positive impact on him helped to solidify her career path.

“I got to see very early on the intervention side of special education and just loved getting to work with Sam and seeing the different kinds of things he could do,” she said. ”I learned very quickly that I wanted to be a special ed teacher and learn about Sam’s needs.”

Unfortunately, the family’s lives took a tragic turn when Deger’s mother died of a rare form of bile duct cancer while pregnant with Deger's youngest brother. About 13 years later, her father died of cardiac failure. Deger, who received her bachelor’s in special and elementary education from Millersville University, and her master’s in reading from Edinboro University in 2010, suddenly found herself at a crossroads in both her personal and professional life. With three children of her own, she took on guardianship of Sam and acts as an educational advocate — a point of contact for the school districts — for her four youngest siblings. She found herself navigating the legal and social terrain of caring for a family member with disabilities, and her questions about those issues led her to pursue her doctorate in special education at Penn State.

One of the distinguishing features of the College of Education’s special education program, Deger said, is its emphasis on developing positive interactions between schools and families. Students learn various communication strategies such as active listening, interpreting data and applying goals to case scenarios. According to Deger, research has shown that beginning teachers need the most support when running Individualized Education Plan (IEP) meetings with students’ families. An IEP, which is required for all students who receive special education services, is a written statement of the educational program designed to meet a child’s individual needs.

“There needs to be a better method of communication between districts, universities and families,” Deger said. “I love writing a plan that’s going to exceed everyone’s expectations and help students meet their goals.”

After graduation, Deger aspires to land an academic position in which she would work with special education pre-service teachers. She would also like to help Sam, who has been working at Margarita’s Pizza in downtown State College for the past four years, open his own pizza shop that would provide opportunities to students with disabilities.

Deger said that her experience as a sibling and guardian of an individual with disabilities has deepened her empathy for families in similar situations. She added that Penn State’s requirement that special education majors do multiple field experiences prior to starting student teaching is intended to “make sure it’s what they want to do.”

“Working with kids with disabilities can be the most rewarding and the most heartaching,” she said. “If you don’t come to special ed from (family) experience, I think you need to come to special ed with (some type of hands-on) experience.”

A stroke of serendipity

Theoni Mantzoros, a fourth-year doctoral candidate in the Department of EPCSE, and Brooke Fava, a rising senior majoring in special education, had professional and personal experience, respectively, that turned out to be uniquely intertwined. They found out that they were both attending Penn State in summer 2017 during Fava’s New Student Orientation, when they ran into each other at the Penn State Berkey Creamery.

“It was kind of ironic that we both ended up choosing Penn State,” Fava said.

About 14 years ago, Mantzoros worked as a behavioral analyst at an institution for students on the autism spectrum in New Jersey. Along with a teacher and paraprofessional, she worked with Fava’s fraternal twin sister, Jordan, age 21, who has moderate to severe autism and presented some challenges in the sense that Mantzoros initially didn’t understand her “extensive self-injurious and tantrum behaviors.”

“This is something that, as a behavior specialist, I needed to figure out first in order to implement the most appropriate intervention,” she said.

After multiple assessments, Mantzoros and her supervisor determined that Jordan engaged in self-injury when she wasn't able to access what she wanted, and that there was also a self-reinforcing automatic component.

“This type of behavior makes it very difficult to treat,” Mantzoros said. “We did come up with a plan, however, and within six months of working with Jordan, we started to see reductions in the intensity, duration and frequency of the behaviors.”

One of the goals developed by Jordan’s teacher was for her to be able to go out into the community without engaging in problem behaviors and accepting that she could only purchase one item at a store — she very much liked to fill up the cart while shopping. One day, after working with Jordan for many months, Mantzoros recalls “being at the store with Jordan, and Jordan putting one item in the cart. When she went to put in another item, I took out the first item and asked her to choose which one she would keep. She gave me such a look! But she did select one item after a long moment of consideration.”

After repeating the process multiple times, Mantzoros and Jordan eventually went to pay for the one item she really wanted to buy. While Jordan did express frustration, Mantzoros said, she never engaged in the problem behaviors that had been of concern to the teaching staff.

“This trip was the culmination of all the team had been working on and we were all beyond thrilled!” Mantzoros said. “Jordan allowed me to see how much change is possible when a group of professionals work together and implement best practices with consistency and fidelity.” 

For Fava, growing up with a twin sister with autism has significantly influenced her life’s trajectory.

“Personally, I feel as though being a twin has allowed me to grow with Jordan at a unique level,” she said. “I was able to experience all of her milestones with her rather than just observing them.”

According to Fava, there is a lot of misunderstanding among the general public about autism partly because of the popularity of shows such as “The Big Bang Theory” that feature characters with milder disabilities such as Asperger syndrome who display savant-like characteristics. She said she would describe autism “more as like a palette of different kinds of paints” rather than a spectrum, adding that Jordan has a multi-faceted personality and is good with technology.

“I don’t think enough people are aware of the severe side of the spectrum and what problem behaviors look like,” she said. “More knowledge would lead to more empathy.”

Mantzoros’ team’s efforts with Jordan were much appreciated by the Fava family — in fact, Mantzoros said, Brooke’s and Jordan’s mother often called the group the "dream team." 

“I believe it was the first time in Jordan's life that she had a group of professionals who wanted to work with her and truly wanted to make a change in her life,” Mantzoros said. “Working with Jordan and other students with difficult behaviors inspired me to increase my knowledge base in applied behavior analysis and guided me towards pursuing my certification, master's degree, and eventually, doctorate.”

Jordan’s success also helped set Brooke Fava on her course to pursue a career in special education — particularly in the area of behavioral analysis. Before Jordan was placed in the school for children with disabilities at a young age, Fava said, her parents “had to consistently fight with the school district to keep her in the district.”

“It was so refreshing to have someone want to work with your sister and help her,” she said. “I want to have that impact on families, too.”

“I hope to pursue my master’s in special education with a focus on applied behavior analysis through Penn State so I can receive my Board Certified Behavior Analyst (BCBA) certification. I plan on using what Jordan has taught me — which is behaviors are a way of communication — in order to help all future families I work with.” 

In addition to the stellar reputation of the EPCSE faculty members, Fava said, she also benefits from the small classes and being able to interact on a personal level with her professors.

“It’s like a special ed family, everyone tries to help each other out in every way they possibly can.”

Mantzoros, who completed EPCSE’s master’s program online, said she came into the doctoral program “terrified of presenting to people.” Due to the systematic way that the program prepares students, she is now confident in her abilities to present to classes as well as run her own experimental studies. After she completes her graduate studies, she aspires to an academic position in which she would work with undergraduate pre-service teachers.

“Giving (students) the tools to become as independent as possible is an important initial step in working with people with severe disabilities,” she said.

A particularly memorable event for Jordan, Fava said, was being named homecoming queen at her school last fall — which was given added poignancy considering Jordan’s recent graduation and her transition to an adult services program.

For Mantzoros, seeing a photo of Jordan wearing her homecoming tiara, with her long brown hair flowing, was especially gratifying considering the transformation Mantzoros had witnessed over the years.

“It’s such a drastic change from where she was to where she’s come,” she said. ”I’m grateful that (Brooke and Jordan) are still in my life so many years later.”

An unbreakable bond

Julia Prokopik is another aspiring special education teacher in the College of Education who found her calling through a family member with disabilities. A student in the Special Education and Curriculum and Instruction with Emphasis in Language and Literacy Education Integrated Undergraduate‐Graduate (SE/CI‐LLED IUG) degree program, she is on track to graduate with both a bachelor’s and master’s degree in May 2021.

Prokopik, who is from Pittsburgh, said her life has been profoundly impacted by her 21-year-old sister, Maggie, who has an extremely rare disorder called Chitayat-Hall syndrome — which includes characteristics such as intellectual disability, dysmorphic features and growth hormone deficiency. Throughout most of her life, the Prokopik family believed that Maggie had Weaver syndrome — a rare genetic disorder associated with rapid growth beginning in the prenatal period and continuing through the toddler and youth years. However, within the past couple years, it was confirmed that Maggie is the seventh case in the world of Chitayat-Hall syndrome.

Due to Maggie’s rare condition, Prokopik said, her developmental growth was delayed and she reads on a fourth-grade level. However, her limitations do not prevent her from living life to the fullest.

“Overall, Maggie is a very, very healthy kid,” she said.

Since Maggie is her only sibling, Prokopik said the experience of growing up with a sister with disabilities was “kind of just normal for me” and caused her to empathize with other kids in similar situations. Some of Maggie’s hobbies are watching sports (especially Penn State teams), swimming, and posting on Twitter (Prokopik monitors her activity out of concern for her safety).

Given Prokopik’s deep bond with Maggie and her understanding of the issues that families of children with disabilities face, her choice of career was pretty much a no-brainer.

“I knew I wanted to work with students with disabilities,” she said. “I think (Maggie) sparked my interest and I don’t know if I ever would have found that if it wasn’t for her.”

She added that her “dream classroom” would be in a middle school with students having a wide range of disabilities.

“I have the understanding of the family aspect. I always think about the reason that drove me to special ed and knowing that my sister would not be where she is if it were not for the amazing teachers she had. I want to be that teacher for students and their families.”

Prokopik’s choice of school, on the other hand, was never even a question.

“I’m obsessed with Penn State,” she said. “My parents went here. This was the only place I wanted to go.”

Like Fava, Prokopik cited the small classes and personal atmosphere as strengths of the Department of EPCSE.

“I know all my professors very well and I know they would help me with anything I need,” she said. “I really enjoy that closeness I have with them.”

Maggie recently graduated from The Children’s Institute of Pittsburgh, which serves students with a wide range of disabilities, and plans to enter a day program for adults with disabilities. Prokopik worked at the Children’s Institute for three summers and during school breaks.

“I feel lucky to have Maggie as my sister,” she said. “It’s a blessing for me. Because I would not be who I am without her or know the things I know without her.”