Fourteen-year-old Nicholas Siciliano of Valley Stream sees kid brother Jonathan, 7, who has hydrocephalus and epilepsy, as "just a regular brother" most of the time. But his mom, Marcie, says that since Jonathan was born, he's been hospitalized 34 times, and Nicholas admits that can be difficult for him and their other brother, Brian, 9.
"It's hard because we don't get as much attention as Jonathan does. When my mom has to stay in the hospital with him, I miss her," he says. "Sometimes I worry about Brian and I feel like I have to be a parent to him."
Suzanne Kornblatt, supervisor of SIBS Place in Hewlett, a support group for siblings of children with life-threatening illnesses, says Nicholas' feelings are normal.
"When a child is diagnosed with a special need, parents by necessity are focused on that child and their days become stressful and busy with appointments," she says. "But that can mean that the well sibling's needs aren't being met."
Respond to their needs
Kornblatt says it's important that parents find a way to respond to the siblings' needs because research shows they'll experience a range of emotions, including fear, sadness, isolation, abandonment, jealousy, guilt, loss of power and control, depression and anxiety.
"They fear that what their sibling has might be contagious. They feel guilty that they somehow caused it," Kornblatt says. "They feel different than their peers and may be uncomfortable introducing their sibling to friends, and this can lead to isolation. Some kids are angry and don't have the words to express that. They might be frightened for their sibling and also jealous about all the attention he's getting. All this can lead to anxiety."
Further, says Kornblatt, often the well sibling lives in a household in which there is inconsistency, where kids can't count on parents being at the ball field or meeting the bus.
In some cases, the sibling will become mini-adults, says Robert Dicker, medical director of child and adolescent psychiatry at Zucker-Hillside Hospital. "They worry about taking care of their other siblings as well as the special-needs child. They don't want to add to their parents' worries, so they don't talk about their own anxieties, like school issues, because they feel their problems pale in comparison to their sibling's."
Another factor is their age, says Sandy Wolkoff, director of the family support program at the Marks Family Right From the Start 0-3+ Center in Manhasset. "The preschooler won't have the words to tell a parent what they're feeling, so it will be reflected in their behavior. School-age kids may have some of the words, but may not be able to manage their emotions. Teens struggle with a lot, too, like the added guilt of applying to college and dating when their sibling may not get to do those things."
Open communication
What helps is to be honest, age-appropriate and compassionate, says Troy Johnson, a child-life specialist at Schneider Children's Hospital in New Hyde Park. "Don't withhold information they can know, but don't overwhelm them. Most situations can be explained simply, like, 'He can't breathe on his own and needs a little help right now.'"
Marcie Siciliano says she and her husband, Michael, have been upfront with Nicholas and Brian about their brother's condition "so they'll always have the ability to ask us about it."
Adds Nicholas: "I'm not scared about Jonathan because my parents tell me all about it, and it helps me cope. Sometimes we don't even see him as disabled."
Identify problems
Be alert to any changes in your child's behavior that could indicate he's having trouble coping, like complaints of headaches and stomachaches, sudden misbehavior in school or at home, a change in socialization patterns, such as not talking to friends or wanting to stay away from home more, or being needier than usual - all normal reactions, according to Kornblatt.
Families can help siblings work through the challenges by acknowledging their well child's feelings, focusing on the individual child's needs and accessing support groups and therapists, if needed, says Stefanie Fernandez, a licensed clinical therapist at the South Shore Services for the Handicapped program of the Peninsula Counseling Center in Woodmere.
Parents can also get a step ahead when they first learn of their child's diagnosis. "Anticipate that your other children will have a reaction at some point," says Dicker. "Make time for them to be able to tell you how they feel. Get help for the special needs child, too, like respite care, so you have one-on-one time with the sibling."
Finally, take care of yourself through the chaos because children learn how to cope by watching you, says Kornblatt. "Teach them it's OK to take time out to care for yourself."
CHILDREN'S BOOKS
It can help for children to read books about other siblings of special needs children. Here are selections recommended by the Sibling Support Project, a national organization for siblings (siblingsupport.org).
For ages 3 to 7: "We'll Paint the Octopus Red," by Stephanie Stuve-Bodeen
5 to 8: "Ben, King of the River," by David Gifaldi
4 to 11: "My Brother, Matthew," by Mary Thompson
4 to 8: "Way to Go, Alex!" by Robin Pulver
7 to 9: "Sara's Secret," by Suzanne Wanous
8 to 15: "My Sister Annie," by Bill Dodds
7 and up: "Views From Our Shoes: Growing Up With a Brother or Sister With Special Needs," edited by Donald J. Meyer.
9 to 15: "The Summer of the Swans," by Betsy Byars
- Liza N. Burby
SUPPORT GROUPS
To learn of sibling support groups, check with your local hospital and mental health clinics, school district, library, YMCA and Y JCC. In addition, here is a partial list of support groups, some of which meet in response to demand:
SIBS Place in Hewlett, a free support program of South Nassau Communities Hospital serving 4- to 17-year-old siblings of children with life-threatening illnesses. 516-374-3000; sibsplace.org.
K.I.S.S. (Kids in Special Services) Center of the Mid-
Island Y JCC in Plainview, support groups for children ages 6 to 11 with developmentally disabled siblings. 516-822-3535, Ext. 332; miyjcc.org.
"Stories, Crafts and More," a free class for siblings and special needs children ages 3 to 7 at Plainview-Old Bethpage Public Library, one Sunday a month. 516-938-0077.
South Shore Services for the Handicapped, program of the Peninsula Counseling Center in Woodmere for families of individuals with highly specialized needs including physically and developmentally disabled. 516-569-6600; peninsula counseling.org.
Variety Child Learning Center in Syosset for children with developmental and learning disabilities has family support days and sibling days. 516-921-7171; vclc.org.
The Marks Family Right From the Start 0-3+ Center of North Shore Child and Family Guidance in Manhasset has support groups as needed. 516-484-3174; northshorechild guidance.org.
Friedberg JCC in Oceanside will be starting a sibling group this winter. Contact Ann Marie Pedalino at 516-766-4341, Ext. 160; friedbergjcc.org.
- LIZA N. Burby
Comments welcome on the message board. I'm not going to be pompous and open up a thread to talk about this specifically, but I certainly will if you guys want to.
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