It takes a village – and a hard-working team
By: Rabbi Rachel Esserman
|L-r: Denise, Brianna, Jared and Chuck Pascarelli. (Photo by Jeannette Hampp, www.CapturedEmotionsPortraits.com)
Some claim that it takes a village to raise a child. According to Denise and Chuck Pascarelli, the bar mitzvah of their son, Jared, not only took a village, but a lot of hard work.
The story of Jared’s bar mitzvah really begins almost 13 years ago. When Jared was 10 months old, he had his first epileptic seizure. Medical testing showed that, in addition to the epilepsy, he also had some developmental difficulties. Denise and Chuck quickly learned how important it was to take one day at a time. That was also their initial approach to Jared’s Jewish education. “[Jared] attended religious school, he learned about the holidays and we attended Shabbat services on Saturday mornings as a family,” Denise wrote in the speech she gave during the bar mitzvah ceremony. “Saturday mornings at Temple Concord have been a gift to our family. I met the Saturday morning moms, whom I adore, and they became a dose of friendship for me every week. We all felt welcome.”
Then, about two years ago, Denise began to think about Jared’s bar mitzah. She focused on two things: working with Temple Concord’s religious school’s principal, Orly Shoer, and finding resources to help her child with special needs. Shoer suggested that Denise begin very simply. “In [Shoer’s] very awesome Israeli accent she said, ‘Can we teach him the Shema?’ I felt reluctant,” Denise said. “But on that day, Orly opened a door: I started singing the Shema to Jared just about everyday, in the morning when I woke him up, and at night before he went to sleep. Those times that I sang to him became precious to me.”
Denise noted that they practiced the single line regularly. Then one day, “many months later, on the way to religious school we were singing it in the car,” she added. “Then [Jared] stopped me. ‘I’ll do it myself,’ he said. The words of the Shema came from the back seat of the car – each sound, every word, sung just about perfectly. I could hardly contain myself. It was like crossing the finish line of a really long race. On that day, I realized that we could dream a little bigger.”
Denise and Chuck were not on their own when it came to teaching Jared. Rabbi Barbara Goldman-Wartell, the spiritual leader at Temple Concord, said a team of people at the synagogue helped. “We worked for two years to make this possible,” she added. “People wanted to work with Jared because he is filled with joy. They wanted to be part of the celebration of his life.” She noted the contribution of his religious school class as an example: The students helped Jared lead several prayers during the service and, earlier in the year, performed a play with him that was filmed by Shalom Shoer and shown during the ceremony.
In addition to his time with Goldman-Wartell and Shoer, Jared was tutored by Lesley Thesier, who worked one-on-one with him on Saturday mornings; Julie Piaker, who helped him with his lessons on Sundays; and Josh Wallenstein, who taught him on Mondays. Wallenstein also took Jared to the movies and to play miniature golf; Brianna, Jared’s younger sister, sometimes joined them on their excursions. Denise worked with Jared the other days of the week.
Unfortunately, no one in the Greater Binghamton region specializes in Jewish special needs students, so Denise also sought professional help from outside the area. After Googling the words “special needs bar mitzvah,” she found the website of Gateways, whose mission is to “ensure that Jewish children with a full range of learning styles, abilities and challenges succeed academically, socially and spiritually to their fullest potential.” It offers educational programs and resources for parents, teachers and school administrators. Although most of their students attend Jewish education classes in the Greater Boston region, the organization agreed to help Denise long distance.
Nancy Mager, of Gateways, said in an e-mail interview, “While we do normally work with students locally, working long-distance with Jared and Denise was not a problem. With the use of technology, Denise shared videos of Jared so we could get to know him a little and see what he was able to do. We exchanged e-mails or had phone calls and Skype calls to figure things out. This information, along with Denise’s understanding of her son, gave us enough information about his strengths and learning style that allowed us to help guide her. And while it is certainly more fun to work side-by-side with a student and really get to know him or her, Denise was a great partner in sharing of information about what would work for Jared.”
Rebecca Redner, of Gateways, stressed the importance of understanding each students’ abilities in order to learn their strengths and weaknesses. This helps Gateways develop an individualized teaching plan. For students like Jared, this is particularly important. For example, Gateways needs to understand if students can read English before deciding whether or not to teach them Hebrew. Creative educational methods do help. “In recent years, we have started to illustrate prayers with Mayer-Johnson symbols,” Redner said in an e-mail interview. “Each word or short phrase is given a symbol that illustrates its meaning. Students who are not able to read a transliteration of the prayers learn to associate the words of the prayer with the symbols, and learn how to ‘read’ the symbols. Using symbols is also a great method because it helps students (and often their parents, too) learn what the prayers mean. Learning the meaning of the prayers is something that is often overlooked, even with typically developing students! I think it helps students learn the prayers when they know that they’re not simply repeating gibberish, but saying words that have meaning.”
|An example of how Denise Pascarelli personalized material from Gateways so her son, Jared, could use it during his bar mitzvah ceremony. (Photo by Reporter staff)
Redner also noted the importance of introducing children to Jewish holidays and rituals long before thinking about their bar or bat mitzvahs. “Parents of children with special needs – parents of children with any needs for that matter – can start at an early age by simply having Jewish objects in their homes, observing Jewish holidays at a basic level and making holiday foods,” she added. “This helps children to feel like Judaism is something both familiar and comfortable, which is particularly important for children with special needs who tend to have more anxiety about unfamiliar things. Starting with this early goal of just familiarity and comfort with Judaism and Jewish observance can make a big difference as children begin religious school and start to study for a bar or bat mitzvah. Additionally, students with disabilities who might not understand the abstract concept of Judaism might connect with the idea of Judaism in a more concrete way when they know that Judaism has something to do with the tangible acts of lighting a menorah, eating matzah or wearing a kippah
. When children grow up in a home where Jewish objects are visible and holidays are observed, even at the most basic level, they are better prepared for a meaningful bar or bat mitzvah celebration as they approach their teenage years.”
Denise created a prayer book for Jared using modified Mayer-Johnson symbols in order to help him remember the words. To keep him engaged during the service, he performed tasks normally reserved for the rabbi, such as asking people to come to the bima for their readings and honors. To make certain he knew whom to call, his notebook featured photographs of relatives and friends, in addition to containing symbols showing when people should stand up or sit down. A smaller Torah was used for the processional, which enabled Jared to carry the scroll around the sanctuary.
Goldman-Wartell said Jared did more than anyone originally expected, including learning part of the Amidah and reading the first line of the Shema from the Torah scroll. Jared and Goldman-Wartell studied the biblical stories about Abraham and Moses, with Jared deciding that he wanted to focus on Abraham because of the patriarch’s generous concern for others, including helping those who are ill. Instead of a traditional d’var Torah, the filmed version of the class play about Abraham was shown.
|Jared Pascarelli (center) practiced reading with the Torah. Looking on were his parents, Denise and Chuck Pascarelli. (Photo by Jeannette Hampp, www.CapturedEmotionsPortraits.com)
In their speeches, both of Jared’s parents noted how much they had learned from him. Chuck mentioned that Jared views the world with an excitement and enthusiasm that few can match. His son’s “drive and tenacity” serves as an inspiration to keep trying even when things are difficult. He also noted that Jared’s “purity and innocence are remarkable. I truly think that when God was handing out skills and attributes, he gave Jared the purity and innocence that he would like to see in all humanity. If Jared were God for a day, there would be no more hurt, anger, war, oppression, discrimination, hungry people or rainy days. He would make everything as pure as he sees it.”
What Chuck sees as perhaps the most important facet of Jared’s personality, though, is the depth of his love: “And finally, there is love – I think each and every one of you has had a hug from Jared. In fact, earlier this spring, when we were at the Boston Museum of Arts, the security guard who directed us to the exit received a big hug from Jared. Even on those days where I lose my patience with Jared because he has driven me to the point of craziness... he will hug me and tell me that it is OK, I still love you.”
Denise also spoke of the way Jared has inspired her: “There have been times in my life that I’ve wanted to give up, but you inspire me to keep going. You step up when life beats us down. You reassure us that everything is going to be OK. Thank you for forgiving us when we get impatient and mad, thank you for cheering us all on in everything we do. You make us believe in ourselves because you believe in us. And you should know that we believe in you and we are so proud of you. Thank you for showing us the very best in humanity. You live your life with your arms wide open, with your heart wide open. You teach us how to live and how to love. Most importantly, you make the world a better place. May you always know how much we love you. May you stay well and have happiness always.”
Goldman-Wartell added that Jared offered an important life lesson in the short speech he gave after the Torah service, which she saw as a summary of their experience together. In it, he said, “I love my family. I love all my friends. I love all my teachers. And God is in my heart.”