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Supporting Children With Special-Needs Siblings

Children who have siblings with special needs often have conflicted feelings toward the sibling and confusion about their role in the family. Here are ways to help those children express themselves and get the attention they crave.
by Kathy Shiels Tully

Ensuring that your kids get a steady diet of your undivided attention is one of the hardest aspects of parenting. As they clamor for your focus, you have to avoid stretching yourself too thin while balancing all your other requirements—work, school, volunteering, after-school sports and activities, running a household, and more.

What happens, then, if one or more of your children has special needs? The particular type of need doesn’t matter; time and resources must be spent in higher proportion, you’re your special-needs child, understandably and necessarily so.

Which can leave your typically developing child with less of your attention.

Parents and child development experts both know that a child who doesn’t get enough of his mom’s or dad’s attention—a real possibility for children with a special-needs sibling—can act out in anger, with feelings fueled by guilt, jealousy, sadness, or even loneliness. Children can also check out emotionally or assume the role of the “good child.”

“Parents’ attention is golden,” says David Klow, an instructor at Northwestern University and a marriage and family therapist in private practice in Chicago. “Where a parent is putting [his or her] attention is the most precious commodity in the family.”

Author and special-needs teacher Lorraine Donlon, who teaches reading at Centre Avenue Elementary in East Rockaway, N.Y., knows this firsthand. As the older sister of two special-needs siblings—Eileen and their late sister, Patricia, both of whom were severely retarded—she calls the typically developing child in such families the “other kid.”

Donlon says these children sometimes need help expressing and processing their emotions about their role in the family, adding that the emotions are usually so complex that kids don’t know where to begin to translate them into words.

Draw Out the “Other Kid’s” Feelings

Parents of special-needs kids don’t always know how to have a conversation with their “other kid” about his feelings, Donlon says. Likewise, the child might not feel comfortable talking with a parent about his conflicted feelings, especially if he’s aware that the parent is tired, overwhelmed, and dealing with her own conflicted emotions.

Donlon believes the typically developing child needs to be drawn out in expressing his feelings and suggests doing so, literally, through drawing and writing. Donlon is the author and creator of The Other Kid, a “draw it out” workbook that uses art and writing as tools in a “guided conversation” about the child’s role in the family. The exercises in the workbook validate the conflicting and multilayered feelings the “other kid” has about being the sibling of a sister or brother with special needs.

The format is nonthreatening, Donlon says, based on the feedback she’s received since the book was published in 2009: “Some kids say it’s private, like a diary, and some show their parents.” By using the workbook, a child can uncover negative feelings they struggle with while also discovering “good feelings, like a heightened sense of compassion for others,” Donlon explains. By the end of the workbook, a non-special-needs child can hopefully discover a newfound appreciation for and acceptance of her special-needs sibling, seeing the sibling as a whole, with both strengths and weaknesses.

Donlon says her reason for creating the book was to share her personal experience to help make it easier for others. “There were no books like this for me when I was growing up,” she says. The book is available in English and Spanish, with 100 percent of the profits going to Adults and Children With Learning and Development Disabilities, a nonprofit agency in New York. Donlon’s book is written in honor of her sisters.

The Ronald McDonald House in New York City—which offers a home setting for children with cancer and their parents while the children receive treatment—includes the book in new patient welcome bags. A spokesman says staffers have used both the English and Spanish versions of the book as a teaching tool with their educators as well as with the parents of patients.

Lisa Quinones-Fontanez, creator of AutismWonderland.com and mother of an autistic son, says using Donlon’s workbook is “the beginning of an honest conversation.” She adds that the book can benefit not just the “other child” but also extended family members—grandparents, educators, special education service providers, social workers—not to mention parents.

Although Donlon says she wrote the book with children ages 5 to 12 in mind, she often hears from teens who have benefited from using it. She says it has made her see that “the feelings are the same” no matter the age.

Birth Order Can Play a Positive or Negative Role

Researchers and childcare experts have learned that the birth order of a child and his special-needs sibling can affect how the child sees himself.

“A lot depends on the birth order of the disabled child,” says Barry Birnbaum, special education coordinator for the College of Education PhD program at Walden University, an online university based in Minneapolis. “If the disabled child is the youngest child, then the older [typically developing] child is more adaptive. Older siblings tend to be supportive and understanding if they have a sibling with an issue.

“We find in research,” Birnbaum continues, “[that] because the older sibling usually understands what is happening, they will become more understanding.”

However, that’s not the case if the special-needs sibling is the eldest. “The younger the [typically developing] sibling, the more the jealousy,” Birnbaum says.

One-on-One Time Is Key

Both Klow and Birnbaum recommend that parents schedule regular one-on-one time with their non-special-needs child. They add that parents should think in terms of quality of time, not quantity, since the time spent with the non-special-needs child may not “match up” to the time that’s necessarily spent with the child with special needs.

“What we’re all really looking for is a bond,” says Klow. He says the typically developing child needs to feel safe in a relationship and needs her parents’ attention just as much as the special-needs sibling does.

A parent’s undivided attention “is like honey,” Klow says. “It’s the sweetest thing for a child to get.”


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