In this article:   Discussing Disability   Including Your Child in Activities   Dealing With Teasing and Taunting   Resources

First comes the diagnosis: Your child suffers a serious illness, or perhaps is disabled.

Then there's the blitz of tests, treatments, surgeries and special equipment. He may need extra help dressing or eating. She may require a wheelchair to get around.

Between doctor's appointments and physical therapy sessions and visits with school officials and counselors, how do you raise a happy, well-adjusted kid?

"The most important thing is to have the support of the family," says Maria Ascencio, 30, of Santa Ana, California, whose daughter Izel, 10, was born with spina bifida, a spinal disorder that requires her to use a wheelchair.

Include your child in everything you do as a family, parents and experts say. Help her explore her possibilities, and nurture a realistic understanding of her limits.

Coach him on straightforward ways to explain his condition to other kids, and let him know he doesn't have to live with teasing or taunting. Help your child develop the confidence to diffuse teasing, and make sure his classroom and play environments are welcoming and respectful. If your child grows up feeling like just another kid, albeit one with different abilities, that's how other children will see him or her that way, experts say.

"I think if the child is comfortable with himself, the people around him will be comfortable with him," says Suzanne Ripley, director of the National Information Center for Children and Youth with Disabilities in Washington, D.C., and the mother of two grown children born with multiple disabilities.

Discussing Disability

Perhaps the most important step you can take to secure your child's well being is to take his disability off the list of taboo topics and bring it into the open, experts say. Frank conversation at home will set the stage for your child to accept herself and to talk candidly about her condition with others.

Parents should explain to their child his disability or illness, sharing with him what the condition entails, what causes it and how it's treated. That way, when the child faces questions from other curious kids, he will be able to answer confidently.

"You as a parent have to work with your child on answering the question," Ripley says. "Children need to be aware of their own disability."

Mary Repp, 41, of Rancho Santa Margarita, California, is leader of County of Orange Parents of Pediatric Epileptics and mother of a 10-year-old girl with epilepsy. She says forthright acknowledgement of disabilities or medical conditions can dispel fear and confusion among other children.

"Hiding it does more to create the stigma than dispel it," she says. "I think they need to be matter of fact about it and say this is how my brain [or body] works: 'This is a small part of who I am, not everything I am.' "

While children born with disabilities often learn early on how to diffuse curiosity about their conditions, those disabled by illness or an accident may need extra help, says Mary Ann Roberto, a recreational therapist at Shriners Hospital for Children in Philadelphia.

"Kids born with a disability grow up perceiving themselves as very typical, as not different from other people," she says. "The adults and kids around them become accustomed to that physical difference, and are very accepting of it. A child with a sudden disability may see more staring from children who are uncertain how to respond to [a child with a] physical disability."

To guide children with a sudden disability or illness through that discomfort, Roberto says, therapists teach kids a script they can rely on to respond to questions.

"Usually any type of response is enough for a child to be very accepting" of a disabled classmate or neighbor, she says. Roberto says, a child might explain, " 'I am in a wheelchair because I was in a car accident and my legs don't work anymore, and the other child will say, 'Oh, OK. Do you want to play ball?' "

Parents can help break tension by offering a presentation about the disability in their child's classroom, or requesting that the teacher or another expert do so.

"Then the [other] kids are much more welcoming of the child when they go into the classroom," says Joan Tellefsen co-director of Team of Advocates for Special Kids, an Anaheim, California-based advocacy organization for children with disabilities.

In her middle-school classes at Clayton Academy in St. Louis, teacher Jill Bamber familiarizes her students with disability through role-playing and classroom exercises. On some days, Bamber introduces her students -- most of whom have learning disorders -- to adults with physical disabilities. In other exercises, students simulate the experience of disability by navigating the school seated on scooters, or putting on blindfolds and relying on buddies to guide them around.

The experiences raise students' compassion, builds their understanding of differences, and put their own learning disabilities in perspective, Bamber says.

"They really learn to communicate with these people, and not prejudge based on appearance," she says.

Parents of disabled children can introduce their kids to neighbors, and invite nearby kids and their parents to approach them with questions or concerns, experts say. For instance, a child with disabilities might not be invited to a birthday party or other event, for fear she may not be safe or comfortable with the activities planned. A simple conversation can clear that up.

"Most parents of children with disabilities would much rather that you ask the question than exclude their child because you're uncomfortable," Ripley says. "It only becomes an embarrassment if for some reason you feel you shouldn't be talking about this," she says.

Including Your Child in Activities

Few things are as agonizing as explaining to a child why he can't catch a ball or why she can't walk, parents say.

"It's difficult, because she asks, 'Why can't I walk? Why can't I ride a bike? Why can't I roller skate? Why aren't I growing?' " says Ascencio, referring to her daughter Izel, who has spina bifida. "It's hard to find the words. I told her, 'God says you can't do these things, but there are other things you can do.' "

Izel plays baseball and basketball with her brothers, joins her classmates in choir and on field trips, and participates in games, crafts and excursions through Winners on Wheels, a club for kids in wheelchairs.

Parents of disabled children should look for creative ways to help their kids join in fun events and activities, experts say. Explore your child's strengths and build on those, they advise. A child who can't play sports because of a disability may excel in chess, art, music or drama. In group outings, he or she may be able to steer friends toward more accessible activities, or find unique ways to join them.

"It's important to make sure kids are comfortable with their limitations," Ripley says. "If the group has decided to go ice skating, and the child can't ice skate, encourage him to say, 'Couldn't we do something else?' If that's not possible, the parent can help by saying, 'Here, take my camera and take pictures.' The child will participate, and everyone will be happy because he took pictures."

Sometimes kids themselves can devise ways for children with disabilities to participate in group activities. A teacher, coach or Scout leader may brainstorm with the group to seek ways to include disabled children in a camping trip or sports game.

"Let's say they were out on the playground or out on the street and people are playing football. The question would be, 'How can we involve Jimmy, who's in a wheelchair?' " Tellefsen says. "Does he always have to keep stats? Or can we find another way to involve him? In a baseball game, can he swing the bat and have someone else run for him? It's about being creative, and emphasizing what they can do, not what they cannot."

Dealing With Teasing and Taunting

Despite your best efforts, your child may sometimes face discrimination, rejection and exclusion because he is different.

"Every kid faces some sort of slight or bullying. I think most kids, at some point in their high school or elementary school education, face that," says Ruth Hoffman, director of Candlelighters Childhood Cancer Foundation in Kensington, Maryland.

The typical taunts can be even crueler when directed at a child who is visibly different, she says.

"It's not normal to be 7 years old and bald. It's not normal to have an incision mark from ear to ear because he had a brain tumor and had brain surgery. That's above and beyond."

School shootings in San Diego County, California, in 2001 have focused attention on school bullying of all sorts, says Hedy Hansen, director of Comfort Connection, a support center for families of children with disabilities in Santa Ana, California.

"I think we need to make the world a little more accepting for everyone, not just for kids with disabilities," she says.

Teachers and principals should set strict standards of respect for all students, Ripley says. And parents of children who don't have disabilities should discipline their kids for taunting a child who is ill or disabled.

"If the kid is teasing, [parents] should express a real displeasure with that behavior," she says. "Is it OK if they tease the fat kid? Is it OK if they tease the redhead, or the kid whose clothes are out of fashion? This is the same situation. It's not acceptable and somebody needs to say to them that it's not acceptable."

Hoffman says patience and persistence can turn a troubling situation around. When her daughter's leukemia was diagnosed 15 years ago, classmates ridiculed her after another student yanked off her bandana, revealing her bald head.

But school officials stepped in to educate the entire student body. Every classroom read the story "The Paper Crane," about a Japanese girl who copes with her cancer by folding 1,000 paper birds. Afterward, students constructed 1,000 origami cranes for Hoffman's daughter and held a ceremony to wish her well before a bone marrow transplant.

"I think everyone can learn from a sick child how to be compassionate, how to give of yourself, how to be kind," Hoffman says.

Resources

Deborah Sullivan Brennan is an Idyllwild, California-based writer specializing in health and environmental issues. She is a regular contributor to the Los Angeles Times and to several health Web sites, including Apria.com.