Family Finds Success in Advocating for Their Son

By Joanne C. Sullivan

    Being a parent advocate is not something Shannon and Darrell Pendilla thought they would ever need to do, but for the past 11 years they have done it quite well.
    Derrick Pendilla was born in June 1997. When he turned 6 months old, Shannon and Darrell suspected something was different. “We expected Derrick to be rolling over and beginning to sit up,” said Shannon. They went to see their pediatrician who recommended giving it some time. The Pendillas waited until Derrick was 9 months old, then a year. At his one year check up, the pediatrician referred the family to an early supports service and early intervention quickly began.
    Through Derrick’s early support service, he received physical therapy, occupational therapy and speech therapy. “We were thrilled with his early intervention team and they helped us through a difficult time,” said Darrell. “The physical therapist came to our home once a week and gave Derrick the therapies he needed. She also helped us by answering our questions and giving us support.”
    During Derrick’s early years, the Pendillas were in need of information and assistance. Many visits to medical professionals and therapists often gave them conflicting information. “It was difficult to hear some of the information and often confusing. We didn’t know what to do or how to help him,” said Shannon. After many trips to specialists, they found out that Derrick had spastic quadriplegia cerebral palsy of unknown ediology. The doctors did lots of tests to look for more, but nothing was positive.
    “Derrick is not a clear cut case. Many doctors had not seen someone like Derrick before,” said Shannon. It took time, but Shannon and Darrell found doctors and professionals who could help Derrick. As Derrick grew older, he began attending an integrated preschool. There, Derrick was able to receive his much needed therapies while he attended school, and the family formed a relationship with the community preschool team. “Derrick’s physical therapist was amazing. She taught us how to help our son, but also how to step back and allow him to gain independence. She didn’t baby him, and that is what he needed to make progress.”
    The preschool team worked together to give Derrick the practice and therapy he needed, but also it provided a place for the family to belong.
    The Pendilla family had a baby girl, Jordyn, when Derrick had just turned 5. “Jordyn is a wonderful sister to Derrick. They look out for each other and help each other.” said Shannon. Jordyn, now 6, is Derrick’s best friend.
    As Derrick transitioned into kindergarten, in the same school, his individual tutor came along with him. “We were thrilled that Derrick had someone who really knew him go to kindergarten with him. It made him feel more comfortable and made us a little more relaxed about this big change,” said Shannon.
    Presently, the Pendillas are advocating for Derrick in many unique ways.
    The Pendilla family became proud owners of Maple, their black lab, who is trained as a service dog. They found out about NEADS-the National Education for Assistance Dog Services, unintentionally when they were on an outing. “We saw someone with a service dog, and I started looking into it on the Internet,” said Shannon.
    The National Education for Assistance Dog Services (NEADS) is located in Princeton, MA. The Pendillas filled out a lengthy application and were interviewed, then they waited. Once it was determined they were eligible, NEADS found them a perfect match. They were required to attend a week long training session before they could make Maple part of their family. “NEADS helped Derrick to gain more independence, and Maple quickly became part of our family.”
    The Pendillas also are active members of NEHSA- the New England Handicapped Sports Association, based at Mt. Sunapee. They found out about a fundraising event at Waterville Valley ski area by watching WMUR news. It was there they discovered NEHSA, an organization that assists physically challenged skiers. The Pendillas went to the mountain, “so Derrick could see the exciting things that were happening.”
    A volunteer approached the Pendillas and offered to take Derrick with him, and before they knew it, Derrick was going down the hill in a bi-ski! “After that, we were all hooked!” said Darrell. NEHSA also is also based at Mt. Sunapee, which is a mountain that is easily accessible from Keene.
    Through NEHSA, Derrick has been offered the chance to try amazing activities. During the winter, he goes skiing at Mt. Sunapee with Darrell, who has become a professional instructor. “I didn’t even know how to ski until we got Derrick involved with NEHSA,” explained Darrell.
    Derrick has also been spotted waterskiing, through a connection to an organization based in Connecticut called, Leaps of Faith. Last winter, the family traveled to UNH for Derrick to learn how to play sled hockey with the Paralympic Team. Derrick and his sister Jordyn are proud members of Jason’s Dream Team-a baseball team for physically challenged children.
    A few weekends ago, Derrick had the chance to try out a Segway, a motorized two wheeled vehicle. “He learned very quickly how to maneuver it, and we watched in amazement.” said Shannon.
    Life may be difficult at times. “It’s always been a struggle, and it always will be,” said Darrell, “but Derrick gives us strength.”
    “We just can’t hold him back!” said Shannon. It is clear to see that being an advocate has led the Pendilla family on a wonderful path.
    It is hard to see into the future, and Shannon and Darrell worry, like every other parent. Each day is filled with joys and hardships and the Pendillas try to focus on the happiness. Joyfulness will easily spread to you, if you ever get a chance to meet them.

    Joanne C. Sullivan is a preschool teacher at Wheelock Preschool, an integrated preschool, for 6 years. She taught infants and toddlers for 9 years in Boston and Keene at the Cheshire Medical Center. Joanne has a B.S. in early childhood education from Bridgewater State College in MA and will be receiving a master's degree in Instruction and Curriculum from Keene State College in May 2009. She lives in Keene with her husband, Chris, and three children with their yellow lab named Rudy.

Resources and Web Sites:
    www.neads.org
    www.leapsoffaithwaterskiers.com
    www.nehsa.org
    www.nepassage.com
    www.jasonsdreamteam.org