You Got to Have Friends
Michael Davis Photo
In this together: At Jowonio School, a non-profit inclusive preschool, socializing is an important part of students’ experience. Says Ellen Barnes, the school’s director: “We hope we can give these children a toolbox of strategies to navigate the world they are going to have to manage after they leave here.”
When Beth Wagner learned that her son Jaden would be born with spina bifida, a developmental problem of the spine, she and her husband wrestled with many questions about challenges he could face—including how Jaden would make friends.
At 7, Jaden is now enjoying a full life much like any other first-grader’s, but his mother says that’s not due to chance. Parents of children with disabilities need to seek out opportunities for their kids to build social skills just as they do for other resources.
“A lot of times, it’s about speaking up for what you need,” Wagner says. “How do we help them be the best person they can be, whatever challenges they have.”
Onondaga County has many resources and services for children with disabilities, but finding the ones that will help kids develop social skills can take a little more effort. Parents are so focused on helping their children meet health or academic goals, socializing might not be a priority. Sometimes families isolate themselves to protect their children from scrutiny and social disappointment.
“Many of these families feel like there is already so much pressure on them,” says Ellen Barnes, director of the Jowonio School in Syracuse. “They become fearful of putting their child in an upsetting situation, and they don’t know who to trust for support. So, their world gets narrower.”
Local clinicians, school administrators, educators and parents say that this is changing, gradually.
Socializing is an important part of children’s experience at Jowonio, a non-profit inclusive preschool that serves 150 students, about one-third of whom have developmental or physical challenges.
“Our teachers do a lot with cooperative play, engaging children in different ways,” says Barnes, who has a Ph.D. in school psychology. “They do a lot on how to initiate friendships and develop social skills. Sometimes it’s through use of puzzles and songs, and sometimes it’s about how teachers engage with the students.”
For younger children with developmental disabilities, understanding the “language” and subtleties of social skills can be difficult. Through role-playing exercises, stories, puppet re-enactments or group discussions, teachers can address social issues that arise in class. “The teacher can model an appropriate solution to a problem, or ask the students to generate solutions,” Barnes says. “In subtle ways, the children are building problem-solving skills and tools to express themselves appropriately.”
For children with language delays, teachers must help them learn non-verbal strategies. Barnes says children with special needs build confidence in socializing with classmates by focusing on shared abilities and interests.
“For example, children on the autism spectrum often have intense interests,” Barnes says. “We try to find a typical child who has those same interests and can appreciate that intensity.”
“It’s really no different than how social relationships are built with any other child,” Barnes adds. “Outside of school, we may encourage the parents to set up a play date around that shared interest.”
Jowonio’s small classes provide ample support as the children build their social connections. “Knowing each child and their personalities is key,” Barnes says. “This is content for education that is as important as academics. Part of a teacher’s job is to look at the child’s social development.”
Teachers can help set the stage for friendships, but children must practice outside of school. Play dates do much to build confidence and understanding. Those interactions influence virtually every other facet of a child’s life, Barnes says.
For children, acceptance of peers with differences comes quickly in an environment that supports that. “The kids just get it, and they soon understand that everyone is unique—and that’s just part of life,” Barnes says. “We hope we can give these children a toolbox of strategies to navigate the world they are going to have to manage after they leave here.”
Donna Richards has worked with visually impaired students in the Fayetteville-Manlius Central School district since 1982. While her primary role is helping students get educational materials such as Braille and modified computer applications they need to succeed academically, she knows the importance of social development as well. “I’m part of helping the students integrate into the full program, and that includes the social aspect of school,” she explains.
For younger children, it may be as simple as having the visually impaired students use walkie-talkies to play games outside during recess. Small beepers can help all students to play chase or tag. Richards advises older students to get involved in the school activities that match their interests. She encourages them to take risks and expand their comfort zones.
“I’ve had students who are totally blind participate on track teams,” Richards says.
Students with disabilities need to feel included among peers of all abilities, but they also want to connect with others who share their challenges. Richards hosts a picnic at her home each summer so all her visually impaired students can meet each other. Older visually impaired students are matched with younger ones for mentoring, building confidence in both.
Jeremy Block, a graduate student at Duke University who worked with Richards at Fayetteville-Manlius, has mentored younger students with visual impairments for about 10 years.
“I talk to them about the troubles they face, in terms of their relationships with their peers,” Block explains. “I do this because Donna cannot relate that way. She has not had the impairment. She has not sat in the classroom and dealt with it.”
Young people with visual impairments face social challenges that are not obvious to others. Richards says, “You walk into a room and you can’t find your friend—unless they come to you. The ability to initiate isn’t there.”
At FM, students have learned to approach the visually impaired students by calmly announcing who they are before they start talking.
“I teach self-advocacy,” Richards says, “and the kids at FM are extremely respectful of my kids.”
One of Richards’ “kids” is Beth Fleming, a freshman at Fayetteville-Manlius High School. She has been blind in one eye and impaired in the other since birth. Fleming is beginning to think about how to expand the social network she has built since kindergarten.
“I feel really comfortable with my friends here at school, but meeting new people—that’s a little awkward,” Fleming says.
Last winter, Fleming landed a role in the school musical. “It was just a blast,” Fleming says. “It was a good confidence booster because I just felt accepted. It made me feel like I didn’t have a disability.”
Fleming is now considering attending a summer camp through Adirondack Experience, which enables visually impaired teens to have 10 days of physical challenges and adventures. “I never wanted to go before,” she says. “I was too scared. But now I think I’m going to try it.”
If children are encouraged to try new things, and engage with other children—they will thrive, Richards says. “When I talk to parents about a student who is just starting school in the district, they are the ones who are not as confident about how things are going to go socially,” she says. “The kids are letting parents know that they are ready to do more.”
Fleming says this is the one piece of advice she would give to all adults who interact with disabled children regularly. “I do say ‘Don’t worry’ to my parents a lot,” Fleming says. She even has to remind her teachers that she does not need special treatment. “Sometimes I do have to say, ‘I feel like you’re babying me.’”
Instead of shielding, Tina Cosentino sought a way to challenge her disabled child. The mother of four sons was looking for an activity that would appeal to her three youngest, who are close in age. One son, Darius, 12, has Down syndrome, so she wanted an inclusive setting, which she found at the East Area Family YMCA. Darius was a social guy to begin with, but Cosentino says his experience at the Y has expanded his confidence and given him common ground with his brothers and his classmates.
“It’s so inclusive here, across the board,” Cosentino says. “Everyone has gone out of their way to make all of us feel welcome.”
Darius started by taking part in art and swimming programs at the Y. Now he comfortably navigates the building on his own. He played on a basketball team in the winter, and he attended four weeks of summer day camp last summer.
Darius’ experiences at the Y have influenced other aspects of his life. His mother says he is more mature in his conversations with friends and classmates at Salem-Hyde School in Syracuse, where he’s in sixth grade.
“It’s a safe place where Darius can grow, flourish, and be independent,” Cosentino says. Darius’ brothers, Luke and Sam, get a kick out of seeing their brother having as much fun as they are. They don’t have to worry about people accepting Darius, and they can focus on their own programs.
Kelly Butters, senior program director of youth and teen services for the East Area Family YMCA, says any child, disabled or not, can find acceptance in any program offered there. Additionally, there are classes designed specifically for children with challenges. “It’s all about options.”
The East Area Family YMCA now has an inclusion committee, with members who are parents of disabled and non-disabled children. The group’s recommendations have helped change the culture within the entire facility. “To listen to parents share their stories, it just makes you want to do all you can,” Butters says. “We’ve taken an active approach to inclusion, and now it really just comes naturally.”
The East Area Family YMCA also recently partnered with the National Inclusion Project to provide training and additional staff to all summer day camp programs, giving children ages 3 to 15 with developmental disabilities the opportunity to enjoy an inclusive summer camp experience.
The interest in the summer programs has grown rapidly, Butters says. In three years the Y has gone from accommodating five special needs families to more than 80. Other inclusive camping programs are offered through the North Area YMCA and the Jewish Community Center.
Organizations associated with specific disabilities also offer opportunities for socializing. A year and a half ago the Spina Bifida Center of Central New York started offering a monthly family group meeting as part of the clinical treatment program. Families gather at the Institute for Human Performance at Upstate Medical University in Syracuse to share a meal, then the children—generally ages 5 to 18—do a supervised physical activity while parents attend a forum.
The fellowship aspect of the meeting, called Fit Families Group Visits, has been the most rewarding for participants, says Kimberlee Garver, social worker for the clinic.
“One parent stated that their child looks forward to group as much as Christmas,” Garver says. “One thing that makes this group so special is that often our kids with spina bifida are the only children in their schools in a wheelchair, and at group, that is not the case. Not only aren’t they the only kids to arrive in wheelchairs but the staff from SUNY Cortland (Adapted Physical Education program) who collaborate with us on this project, bring extra wheelchairs for siblings, so that the games and other events are on a level playing field between able-bodied siblings and kids with physical disabilities.”
Young children learn a great deal from seeing older children who have the same challenges. Older children get to be role models for younger ones.
“The children do form close relationships, and I know they keep in touch outside of the group,” Garver says. “These are peers who give acceptance.”
Tina Wagner’s family found it comforting to be around others facing similar issues. Jaden attends school in the Marcellus district and had little exposure to other children with disabilities. Now, along with plenty of typical friends, he has a close friend who understands what it’s like to have spina bifida.
“My son makes friends wherever he goes,” Wagner says. “I think part of that is because of all the medical appointments he has had from the time he was a baby—he had a lot of interaction with adults. But these meetings gave him a sense of belonging that he didn’t have before. I like the fact that he can be in a place where he can focus on what he can do, and not what he can’t do.”
There are several programs that offer specific athletic and social outlets for disabled children. The Syracuse Flyers have offered basketball leagues for individuals with permanent lower limb disabilities since 1992, and the Syracuse Challengers have offered baseball leagues for children with all types of disabilities for more than 25 years. Today, the Challenger program can be found in six Central New York locations, and the league serves about 130 players for ages 5 to 21 each year.
Liverpool-based Move Along Inc. provides adaptive recreational opportunities for people with physical disabilities. Founder Greg Callen—himself a paraplegic—has coordinated basketball and sled hockey clinics for the spina bifida group and is working on collaboration with Say Yes to Education in an effort to connect with schools and students who would benefit from the exercise and socialization Move Along promotes.
For Jowonio’s Barnes, working toward a world of social inclusion makes sense—for children with disabilities and everyone else.
“After all, everyone needs support around something,” she says with a laugh.
Block, the visually impaired graduate student, recommends a direct approach to social challenges. “It was not easy. In fact, it was gut wrenching at times. But shying away from difficulty is not acceptable. I learned that lesson very early from people who cared about me, and it makes all the difference.”
Overcoming shyness and discomfort can pay off hugely. “There are a number of things I’ve told different people over the years who have struggled with self-esteem or confidence,” says Block, a Ph.D. candidate in biochemistry. “The first is that you have control over how your life will turn out. On a daily basis you have complete control over your outward attitude toward others. It might take a lot of time, focus, patience or even sheer will to keep yourself from becoming upset about something. … If you begin to see and believe that you are a confident, thoughtful, happy and engaging person—then you have it within you to become more that way.”
Award-winning writer Tammy DiDomenico lives in DeWitt with her husband and two sons.