Posted ByJulie Z. Rosenberg
Understanding the challenges and triumphs of siblings of special needs children
Studies from Penn State show that by age 11 children spend about a third of their time with their siblings, which is more than time spent with parents, friends, teachers or even alone. Siblings can have as much of an influence on who we become as our parents do. But what happens when one of those siblings has a disability and one doesn't?
Kate Strohm, executive director of Siblings Australia and author of Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs, has made a career of helping children with special-needs siblings cope with their unique, but not uncommon circumstances. Strohm helps identify nine ways that parents and caregivers can support these siblings and foster that crucial life-long bond among all their children, both typically developing and special needs.
1. Provide Concrete Information
If kids don't understand a disability, they may make things up, which can lead to all sorts of misinformation: "Maybe Billy has autism because I said those mean things to him." So give them accurate information that is geared for age and comprehension, and remember that as they grow older their need for information will also change.
Seattle-based mom of three, Shannon Wells, who has a daughter with cerebral palsy and blogs at Cerebral Palsy Baby says, "It's important not to shy away from your other kids' questions about your kid who does have the disability. We just explain that she was born super early and has an 'owie' in her brain that makes her hand and foot need a little extra help."
2. Convey that Fair Does Not Always Mean Equal
One day, 11-year-old Sam asked his mother why his brother, Jack, didn't have to clean his room. His mom, Jean Winegardner, sighed. She knew this day would come. 9-year-old Jack has autism and Sam is starting to sense the inequities inherent in having a brother with a disability.
"I can tell Sam, 'Go clean your room' and he'll do it, but Jack won't," says Winegardner, who blogs at Stimeyland. "I have to work him through it."
Strohm, who grew up in Australia with a sister who has cerebral palsy, says, "Parents need to help siblings understand that they try to be fair, but it may not always be equal." Most children can accept that tenet if their own needs are still met, and if they have a sense that their parents have a meaningful and caring relationship with them too. Strohm suggests parents say something like, "I've had to spend so much time this week taking your brother to the doctor, and I haven't had much time for you. What if I pick you up from school next Friday and we go have a milkshake together?"
3. Communicate Openly
It's not easy to talk about sensitive or emotional issues, especially with kids. But parents have to keep communication flowing and children need to feel free to talk about whatever they are thinking. Winegardner has even signed up her brood for family therapy: "I know there will be issues that come up, both good and bad, and I'd like to give them space [to explore them]" she says. She focuses on keeping the lines of communication open. "I want to make sure they can always come and talk to me," she says. "I want to give them an outlet because their lives aren't the same as everybody else's."
"We need to carve out space for communication in our daily lives," says Christine Carter, PhD, author of Raising Happiness: 10 Simple Steps for More Joyful Kids and Happier Parents. She recommends that families have "routine times during the day where there's an open floor for discussion". For example, structure conversations during dinner by asking thought-provoking questions like: "What is one kind thing you did for someone today or that someone did for you?"
Dr. Carter also suggests scheduling a weekly family meeting. Address any issues that family members are having and challenges they need help with. However, "The most important thing is to make these meetings positive," comments Dr. Carter. "Everyone should look forward to [them]. We have ours on Sunday nights while eating dessert. We open with everyone getting a chance to say what they appreciate about another person and we close with fun plans for the upcoming weekend."
4. Provide the Right Tools
Talking is not always what a child needs. Equip your children with alternate coping mechanisms, such as writing in a diary, shooting hoops in the driveway or listening to music. They need an outlet too for any stress they may be feeling, and having their own space and special activities is supportive to their healthy development.
5. Encourage Sibling Bonds
Parents can cultivate positive sibling relationships, regardless of whether children are typically developing or not. Winegardner's approach is strength in numbers: "I'm trying to help them work together so they can be a team to support each other now and as adults." This could be inviting your second-grade brother to play with you at recess or coaching an adult sibling on how to interview for a job.
Disabilities or not, sibling rivalry and arguments will always exist. But encourage your kids to express whatever emotions they are feeling, focus on what they have in common and enjoy the positive aspects of their relationships.
6. Balance Responsibility
South Carolina mom Michelle Helferich, who blogs at Big Blueberry Eyes, says her son Lucas instinctively helps his older sister, Kayla, who has Down syndrome. "He hears us with her speech therapist and tries to help her enunciate better."
"Some care giving and responsibility can be quite positive for siblings and add to their self-worth, especially if the parent acknowledges it with kudos," says Strohm. Try responses like: "that's really helpful when you give your brother a hand with his homework. Thank you. Now I need to put him in the bathtub and you can go play."
Set limits for a sibling's responsibilities to ensure they know that they are not another parent, but a sibling who can play alongside their brother or sister. For example, siblings of children with autism can demonstrate how to be a playmate, and teach social cues and appropriate behaviors. And let the typically developing sibling decide what responsibilities he or she wants to take on--if any.
7. Respond to Challenging Moments
All kids challenge their siblings at one point or another, but those behaviors can feel magnified when that brother or sister has a disability.
Strohm relates a story in which humor was used successfully as a coping mechanism: "One mom was at the supermarket with her two older children--ages 7 and 9--and her baby. The 9-year-old, who has an intellectual disability and epilepsy, had a seizure in the supermarket. The mom's cart was full of groceries, so you can imagine the kerfuffle that ensued. And you can also imagine back in the car afterwards when the 7-year-old is thinking, 'I better not say anything, mom's already upset.' But this mom was able to turn to the child and say, 'Well that was horrendous, wasn't it?'
"The mother's response helped diffuse the situation and let her daughter know she's not alone," says Lynette Fraga, PhD, VP of Early Care and Education and Special Populations at Care.com. "She's also offering permission for her daughter to express her real feelings."
Help children deal with these instances by telling them it's okay to feel embarrassed, protective or angry. Awkward or difficult situations happen to everyone, so talk about it.
8. Foster Connections with Other Siblings
A child with a special needs sibling may believe that no one can understand what he or she is going through and feel isolated. Talking to parents, doctors and other grownups can only do so much; kids need other kids they can relate to. So engage with families in similar situations. For example, Down syndrome Buddy Walks and Miracle League baseball games are just two activities that Helferich and her family are involved in. What that means for her son is that he has known other siblings just like him for his entire life.
"I'm so glad Lucas is being exposed to all kinds of differences and abilities and seeing that it's perfectly normal and acceptable," says his mom. But he also gets to connect with other siblings of children with disabilities, and they can share concerns and joys in their similar experience. Those friendships can, and do, last a lifetime.
Look for local organizations that offer peer support groups or find connections through sites like the Sibling Support Project, a national organization that supports siblings--both children and adults--of individuals with special needs.
9. Discuss the Future
Will my sister get better or worse? What will happen when my parents die? Who will manage her medical needs? Siblings of special-needs children will always have questions--no matter how old they are.
"When school age and adolescent siblings ask about their sister's or brother's future--and they will--it's important not to dismiss those questions," Strohm says. "Don't tell them not to worry because children do worry. You don't have to go into great detail with young children, but they need to know that there are plans in place. Then, as a child becomes older, parents can involve them in those discussions." For more information, read our article, "What Special Needs Parents Need to Know About Wills and Trusts."
One of those older siblings is forty-year-old Criswell Lappin, who grew up in North Carolina with a younger brother who has multiple cognitive and physical disabilities. "As complex as his situation was, it taught me an immense amount of patience and also gave me a pretty decent perspective on life," he says. "Growing up with my brother empowered me to believe I could do anything I wanted, because he has been able to make it through a much more difficult life. He pushed me to get to where I am now."
Julie Z. Rosenberg is a mom to two kids (one of whom has hemiparesis) and lives in Brooklyn, New York. She has written for ParentDish, New York Times' Motherlode and HuffPost Parents, and produced a monthly column on Park Slope Patch, called You Don't Know Jack, about navigating the complex world of being a special needs mom.