Sibling rivalry affects every family, but what happens when one sibling is disabled and requires greater attention from parents? How does the other adjust?
It can be a bumpy road, and until last October there was no specific program in Lake County that could help. But now there is: the Sibling Support Group. It is sponsored by Family Circle of Libertyville, a family support and parent education program for parents with young children. Initial funding for the program came from the Special Education District of Lake County (SEDOL) Foundation, a not-for-profit organization that looks for private support for programs the school district is not able to fund.
The support group is open to all families who have received services from SEDOL. The Sibling Support Group helps children aged 6 through 9 who have a sibling with special needs; at this age, children are acutely aware that their brother or sister is “different.” The sibling can be any age, and the special needs of the siblings vary widely. They can be physical, psychological or academic; the one exception is that the program does not include siblings of terminally ill children, because theirs is considered a different set of shorter-term circumstances. The range of special needs has included Down’s syndrome, seizures, cerebral palsy, heart problems and partial deafness.
Although the needs of the siblings differ, the children in the program all face similar issues. They may not always verbalize these issues, but very often they might feel an awareness that their sibling is different, feel discomfort in explaining the situation to their peers, embarrassment in public with their sibling or difficulty in discussing frustrations with their parents’ protectiveness for their sibling.
They have to learn to express their anger, discuss their feelings and handle negative comments from strangers, according to leaders of the group, which are not easy tasks for young children.
That is why this unique program is so important, parents say. It is a safe environment that helps kids have fun, share feelings and gain support. Each session includes a craft, a snack and a structured time for talking with each other and therapists. Discussions center on what it’s like to have brothers and sisters, without necessarily focusing on the sibling disabilities.
The group, or The Club, as the kids call it, meets from 6:15 to 7:30 p.m. on seven consecutive Wednesdays at a private preschool in Grayslake. Group size is limited to six to eight children. Families that can afford it, pay $10 for the seven weeks; if not, fees are on a sliding scale.
Two therapists with training in clinical social work lead the program, which is not attended by parents or siblings. Toni Rey is a former teacher with 20 years of experience, including work in special education. Cece Cornell is a second-year social work intern and a registered nurse with experience in an oncology unit.
Rey explained the purpose of the group: “These siblings tend to get less attention from their parents, so this group gives the children something special just for them.” The leaders use crafts and games to help the kids relax and open up. One craft project, for example, was making a frustration pencil. The kids decorated pencils–with crazy facial features and wild, troll-like hair that stuck straight up–to start a discussion about “What makes me frustrated?” At Halloween, kids designed construction paper masks. Then they talked about masks people wear to hide their feelings.
Although the children are encouraged to discuss their feelings about their siblings, they are never forced. In the end, they seem to learn the most from one another.
Joanne Juska of Lake Villa is responsible for getting the Sibling Support Group in Lake County. She had been making a two-hour round-trip each week to take her 8-year-old daughter, Carley, to support group meetings in Chicago. Carley’s 5-year-old sister, Allison, suffers from a rare condition, sensory integrative dysfunction.
Allison cannot block out stimuli; any type of sensation–hearing the wind in the trees, seeing bright sunshine, sitting on a hard couch–can overwhelm her. She does not speak but has learned sign language, as has Carley, who boasts that they know about 25 signs.
Having a program in Lake County, just minutes from home, simplifies life for the Juska family. “It’s so important for kids to have a comfortable place like this where they can be understood, where they can express anger and share feelings,” Juska said. “It has also helped Carley regain her self-confidence. They learn that whatever they feel, it’s OK.”
Carley said her favorite part of the group is doing the crafts and meeting new friends. Chuck Juska, Carley’s father, noticed a change he attributes to the group. “Carley talks more after the meetings. She is always excited to go. It all works together,” he said.
From the community’s point of view, the program works very well. According to Marcy Dudas of Lake Zurich, excutive director of the SEDOL Foundation, it has been an exceptional program which she said she knows has helped. “Siblings sometimes feel lost in the shuffle,” she said, “and this has given them something spec just for them.”
The group attracts a loyal following. Sherri Holloway of Round Lake Beach said her 7-year-old daughter, Nicole, was hooked after the first session of the group. Holloway said it helps Nicole express her feelings about her 5-year-old sister, Christy. Christy had open-heart surgery when she was just 4 months old and now battles a neurological seizure disorder, which requires her to be hospitalized about five times a year.
“I will do whatever I can to help ensure that Nicole doesn’t end up resenting Christy,” Holloway said. “This group helps. It is the best thing we have encountered. It’s something strictly for Nicole.” She added that the group is better for Nicole than her other activities, such as ballet class. “There, other kids go home to a regular setting. This group, however, offers a deeper connection. It is fun for Nicole, but she also learns that other kids go home to situations just like hers,” Holloway said. “If we have to miss a night, she is devastated. She loves it that much.”
So, it seems, do many others. The first two seven-week sessions of the Sibling Support Group were an overwhelming success, according to a program survey. Parents also have requested a summer program, one for teenagers and one for younger children. Future sessions, however, may be in question, because additional funding must be secured and enough demand demonstrated.
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For more information, call Toni Rey or Cece Cornell at 847-367-5991.
