Tailored plan enabled young man to receive sacraments alongside his brothers

By Dyann Nashton
Sun contributing writer

Evan Merrell does not have the busy extracurricular calendar of most teens his age. Outside of school, there are not many typical activities in which he is able to participate. As he noticed kids his age getting drivers licenses, he asked his parents, Tracy and Todd Merrell, of Oneida, “What am I going to get?” They struggle to answer these types of questions in many cases, except when it came to the topic of Evan receiving his sacraments.

   According to Tracy, Evan was diagnosed with Rubenstein-Taybi Syndrome (RTS) when he was very young.

   “He was falling behind as a baby and not meeting those milestones,” she said. After taking him to doctors locally, they were referred to Johns Hopkins’ Kennedy Krieger Institute in Baltimore and later to Cincinnati Children’s Hospital, one of the country’s leading programs for RTS.

   “It never really mattered to us what was wrong with him. We just wanted to be able to point him in the right direction,” Tracy said. Cognitive deficits, autistic tendencies and shortness in stature are a few characteristics of the genetic glitch, she said.

   When Evan was baptized at St. Patrick’s Parish, Tracy said it didn’t cross her mind that there may be a possibility that Evan might not be able to make the rest of his sacraments or do the same things as his siblings.

   Today, she describes her son as “not your typical sixteen year old” who attends high school in the morning with his afternoons at BOCES’ career exploration program.

   St. Patrick’s Director of Faith Formation Lisa Spooner approached the Merrells one day about the possibility of Evan preparing for his sacraments. Tracy admitted, “I would never have asked Lisa because I wouldn’t have wanted her to feel obligated to do that for us.”

   But Spooner helped the family craft a plan that took into account Evan’s unique learning style and that would enable him to make First Reconciliation, First Holy Eucharist and Confirmation. Adaptations helped Evan maintain focus and regular materials were supplemented with others, like those with stickers, that appealed to him.

   Spooner said, “With all people, what works for one may not work for others. We took a hard look at not only the curriculum but also at things from a scheduling standpoint.”

   Father Richard Kapral, pastor at St. Patrick’s, said, “We didn’t baby him because of any disability. He did the work and he always tried to be very precise in everything he did.”

   The customized program also enlisted the help of particular faith formation classmates: Evan’s older brother Eric and younger brother, Will, who happened to be making their sacraments as well. Within a relatively short time, Evan first made his Reconciliation and Holy Eucharist with Will and then his Confirmation with Eric.

   “It is one of the few things he can say he could do like his brothers,” Tracy said. She added that she felt having them nearby likely reassured Evan.

   “It probably was one of those comforting moments in knowing that he wasn’t facing it all alone,” said Father Kapral, “but I don’t think he was nervous. He was just happy to be doing it.”

   Evan keeps his feelings to himself about whether he was anxious about making his sacraments and if he felt better with his brothers’ presence. When asked about it, he simply states, “It was cool.”

   Evan’s religious education meant participation in the classes on Reconciliation and Holy Eucharist but independent study for Confirmation. He particularly enjoyed researching saints and writing his letter to the bishop. At one point, he asked Spooner to find him some material to study about the history of the church.

   “He was very excited about making his sacraments,” remembered Father Kapral, “especially when it came time to celebrate them. He knew this was a very big moment in his life.”

   Evan has a penchant and great memory for lines he hears on TV and the radio. When asked how he felt about making his sacraments, he said, “It’s like the moon and stars all landed on me at once and rocked my world.”

   Eric is currently at student at Syracuse University and said the way Evan learned about his sacraments is not very different from how many of us learn and enjoy our religion. “That’s the beauty of it for us. We don’t always have to physically be a part of a class but can learn about our faith by observing and in other ways,” he said.

   He said he believed his brother would have found the regular program overwhelming without the condensed curriculum. “It’s more of a focus issue with him,” he said. Yet, Eric noted that Evan’s concentration improves when he’s engaged in activities he enjoys like reading and therapeutic horseback riding.

   Although his brother’s program was a little different from his, Eric said he thought Evan knew and valued what he was learning. “I’m not one hundred percent sure how Evan’s brain works, but he definitely understood,” he said. “It’s like when you’re little and there is a death of a loved one. You may not fully grasp it compared to when you’re a little older and you truly understand. Evan really grasped it.”

   Tracy is a bachelor’s-prepared registered nurse with a New York State teacher certification. She works as a BOCES Allied Health instructor. Yet, she said, “I learned a lot of great things through this process.” The experience prompted her to become trained as a catechist to help teach Confirmation classes at St. Patrick’s.

   “The truth is that any time a parent gets involved in their child’s faith formation, whether they have a special needs child or not, it enriches their life,” said Spooner.

   According to Connie Armstrong, director of special education for catechetics, The Guidelines for the Celebration of the Sacraments with Persons with Disabilities provides guidance when it comes to those with special needs. Approved by the United States Conference of Catholic Bishops in 1995, the document is intended to “promote accessibility of mind and heart, so that all persons with disabilities may be welcomed at worship and at every level of service as full members of the Body of Christ.”

   “Catholics with disabilities have a right to participate as fully-functioning members of the Church,” said Armstrong. “It doesn’t matter what their disability, they can be catechized on the level they are at.”

    She acknowledged that, like the Merrells, many people who have family members with special needs are reluctant to go to their parish and inquire about faith formation. “The first thing to do is to go to a parish director of faith formation. He or she can then go on to catechize the community,” she said. It is as much about educating the faith community as it is about educating those with disabilities, she explained.

   Armstrong’s office serves as a clearinghouse for information to help people and parishes welcome persons with disabilities. “I have catechists call me all the time and ask how to work with a child with special needs,” she said. With the Individual Faith Formation Plan, a tool that helps identify an individual’s strengths or difficulties, she is able to work with catechists to provide resources and networking to help both the parish and families.

   “It’s really about what will make faith formation a good experience for everyone involved,” Armstrong said.