Blog & stories
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"Why don't you ask Jeffrey if he'd like to play with you?"
"But he doesn't speak English!" insisted the boy, five years old and innocent. His mother was mortified, but our mom just smiled.
Jeffrey is my brother. He was born with Cerebral Palsy twelve years ago, and he only began forming phrases and the occasional sentence around his tenth birthday. Through Jeffrey's
struggle, I have realized that there are so many other ways beyond English through which I can express myself.
Life with Jeffrey can be frustrating for both of us because he doesn't always communicate effectively in the conventional way, in "English." However, he has found alternatives with the help his team of teachers, therapists, and friends. This past spring, I published a documentary book and website called "In Other Words" about how they discover and develop those alternatives.
My work provided me a chance to communicate my perspective to other people. Reporting and writing were essential to my documentary, but just as important as the text were the photography and design. The images embedded within the book and website capture how Jeffrey relates to the world in a way that I could never communicate just through words. The design of my project was also essential in arranging my thoughts in a more coherent and appealing way. Even the color scheme helped communicate the feelings found in Jeffrey's world—shades of buttercup yellow conveyed the simplicity and joy of being part of Jeffrey's life. Those visual aids added color to the story I told.
Taking my camera and journal everywhere I go, I am constantly trying to record the world around me. Just like Jeffrey, I communicate in ways beyond English. Communication as a vehicle for positive change is at the base of my academic interests—journalism, design, international relations, and political science—and my openness and ability to communicate in different modes empower me to connect and relate with a wider range of people.
When I wrote an article for my school paper about Spencer Elman, a senior with special needs, I was sensitive of his parents' concern that it would reflect him as someone with disabilities rather than as a teenage boy. I often translate articles for the paper into Spanish so that Hispanic families can feel connected to the school. For my Senior Project, I am creating an online magazine to inform young people of current events by incorporating briefings and backgrounds of details that traditional news sources assume their audience is aware of.
Jeffrey has taught me to be versatile. If I communicated with him in the same way as I do with my parents, we wouldn't have any meaningful communication. The same is true for anyone else—everyone's style, background, and even language are different and affect the way they communicate.
When I tiptoe outside Jeffrey's bedroom window on my way to school, three claps see me off. "Not quiet enough!" those claps tease me. "I'm awake!"
For the past five years, Dor Carpel and Jeffrey Zuegel have been getting together weekly to play games, eat dinner and hang out. When they greet each other, it's obvious from the big smiles, high fives and bear hugs how much they care about each other.
But the friendship means more to Jeffrey than it might to the average kid. Jeffrey, 12, was born with low muscle-tone cerebral palsy and has associated developmental delays. Like many children with special needs, friendships are not as easy for him as they are for typically developing kids. The Friends at Home program, which pairs special-needs children with teenage volunteers who visit them each week, brought the two together. Over the years, mutual affection and true friendship have flourished.
"These are the children sitting on the side of the playground. They're not included necessarily with their peers," said Ezzy Schusterman, executive director of The Friendship Circle, the Palo Alto agency that oversees Friends at Home. "This program is important because providing the opportunity for these kids to have a friend and to be like every other kid changes their world. Being treated like a typical child gives them happiness and joy and purpose.
"Jeffrey is a perfect example. He has a whole community now. He has friends that come and celebrate his birthday and other holidays. Higher functioning kids that go to special classes at Paly or Gunn have someone saying hello to them because they have a friend. (Without the program) they would have just been 'the kid in the special class.' These are the stories that we hear over and over again."
Friends at Home was founded in 2003 and now serves about 75 families of special-needs children. About 80-85 teenagers from Palo Alto, Menlo Park, Los Altos and nearby areas volunteer. Although the Friendship Circle is a Jewish organization and the volunteers are Jewish teens, the program is open to any family with a special-needs child. Families and volunteers typically find out about the program through word of mouth.
The program takes care to match children and families with appropriate volunteers and provides training for the teens. The training includes learning about various disabilities and role-playing simulations to experience different needs that each child may have. In 2011 Friends at Home received $5,000 from the Palo Alto Weekly Holiday Fund, which enabled them to hire a program director to oversee the relationships and make sure that everything is going well.
"We need to make sure that children get the right buddy. We must have proper oversight to meet the family, meet the teen, match them and make sure the match is a good fit and it lasts," Schusterman said. "We need to make sure that the volunteer is having a positive impact on the child and reassure the teen that they are making a big impact."
The Family Circle raises money from individuals, organizations, family foundations and fundraising events. Because of the current economic climate, this year has been financially challenging and several donors have cut their funding, making the Holiday Fund money especially appreciated, Schusterman said.
After completing training, teens are given an activity for their first visit and a resource booklet of things to do. From there, the teens often develop their own activities based on the abilities and preferences of their buddies. The teens typically visit their buddies once a week for an hour to an hour and a half.
But that's just the beginning. Many of the families and teens develop bonds that go beyond the standard weekly visits, growing into devoted, enduring relationships. For example, Jeffrey currently has not one but three active buddies who have formed an extended family with the Zuegels. Carpel, a sophomore at Foothill College, recruited high school students Yael Waizman and Iris Bachmutsky, who will provide continuity to Jeffrey when he leaves next year to continue his education at a four-year university.
"I'm transferring after this year and most likely will be going to a school where I won't be local, but everyone who's ever been one of Jeffrey's buddies (including two previous buddies) stays connected. Every vacation when we come to town, we have a big reunion, so every time I'm around I'll visit Jeffrey for sure," Carpel said.
"The best part (of the program) is it's like having a bigger family," said Jeffrey's mom, Lisa Zuegel. Jeffrey also has a big sister, Devon Zuegel, a high school senior. "I can count on them, and we have such a feeling of community. We love it when they come over, and we have all these kids sitting around the dinner table."
Not only do the families and the children benefit from the program, but the teens do, too. "You see more of their perspective. Before this I didn't know how (children with special needs) were treated and what their families had to go through. It's a different perspective, and one I think everyone should know," Waizman said.
Bachmutsky said: "I've learned a lot from Jeffrey and how he works and how he thinks. We are always working as a team with him, making new games all the time. It's a really great outlet for creativity."
All three teens said they look forward to their weekly "Jeffrey time."
