A 13-year-old boy befriends twin 13-year-old girls. The next thing you know the kids aren’t talking. The boy’s mom hears the girls are off-limits to her son “because of his way of touching them.” A visit between moms gets heated. Friendships end. On the cheerless walk home, the boy’s mom asks her son what happened. His touchingly naïve—and telling—response: “I don’t know. I guess it was about touch football.”
The boy, who lives in Plano, has Down syndrome. His mother, who asked that their names not be used in order to save her son any embarrassment, says her son, like many kids with Down syndrome, connects best with others by touch (in his case, shoulder-patting or rubbing). His gesture was simply an innocent way to say hello, but in a world where fearful communities can sometimes desperately misread the behaviors of kids with special needs, teaching kids about appropriate physical affection is crucial, because still worse scenarios can arise when a child with intellectual disabilities receives no sexual education or guidance at all. In fact, studies indicate that kids and adults with special needs are at least twice as likely to suffer sexual abuse as typical people, and one expert, Leslie Walker-Hirsch, a New Mexico educational consultant and author of The Facts of Life … and More: Sexuality and Intimacy for People With Intellectual Disabilities, says the incidents are so often underreported that sexual abuse occurs more like six times that number. The U.S. Department of Justice estimates that 68 percent to 83 percent of women with developmental disabilities will be sexually assaulted during their lifetime, while the figure is at 16 percent for all women, according to the Rape, Incest and Abuse National Network. With odds like that, the “birds and the bees talk” really can be a life or death subject for vulnerable young adults living with special needs. But educational resources are few, and oddly, in a society that bombards us with every imaginable kind of sexual activity and nuance on television and the Internet, most Americans are still squeamish about discussing sex with their kids. Yet talking is key.
THE BEST WAY TO KEEP ANY CHILD SAFE is to begin sexual education as soon as he or she begins to learn words, reveals Linda Brock, Ph.D., an associate professor of family sciences and coordinator for family therapy programs at Texas Woman’s University in Denton. Parents who won’t discuss sex in a straightforward way may leave a child curious—an opening that predators recognize and use, warns Brock. “Kids are vulnerable when they’re ignorant—it’s really unfortunate that we [as a society] think ignorance is chastity.”
And what we say as well as how we say it is critical to send these kids the right messages, she cautions. For example, she notes, parents typically teach correct names for all body parts except genitalia and breasts. As a result, “kids grow up not knowing the proper names of things,” she explains. “Use real body part names,” Brock advises. “Or, if you have the idea that a scientific body part name isn’t appropriate, find something that doesn’t send the message, ‘This is bad.’”
With atypical kids, clear and early communication is crucial, because the day will come when parents are dealing with someone who has the body of a teenager but who functions at a cognitive level behind his or her peers.
KATHY DYER OF DALLAS, DIRECTOR of the childcare inclusion project at Easter Seals of Dallas, has an adult son with an autism spectrum disorder. She says her “aha moment” occurred at a doctor’s office. The doctor casually commented that her son had raging hormones and she recalls thinking, “‘What?!’”
“He wasn’t acting out sexually or anything,” Dyer explains, and she admits, the “whole notion came up way before I was ready to address it.” But while she was taken by surprise, Dyer quickly adapted by talking to her son. She also provided him with a book designed for younger kids explaining “where we came from.” She summarized more advanced materials for him in ways he could understand.
All of the parents interviewed agreed they couldn’t count on public schools to handle the delicate subject of sex. While kids with special needs who are integrated into regular classrooms may get sex education, it’s rarely at a level they can comprehend. And, to make matters worse, special education classes often don’t address the subject at all because the students’ emotional maturity levels and comprehension vary so widely. Explaining the details (about eggs, sperm and intercourse) is necessary, of course, if your child can grasp the concepts, but—particularly for kids with special needs—boundaries more than the technicalities must be the focus of the discussion because the issues that get intellectually disabled teens and adults into trouble are more about what’s appropriate where, when and with whom.
For example, even though their bodies are maturing, kids may not understand that being naked in the living room as an adult is not appropriate, or that putting your hand on a girl’s breast is crossing a boundary. They may act inappropriately without the slightest thought of sex—it could be as simple as hugging the wrong person.
Kids with Down syndrome, in particular, love to hug because they’re not good with abstract concepts, reveals Walker-Hirsch. “Language is an abstract concept,” she explains. And “it’s much more concrete for someone to say ‘I’m glad to see you’ by hugging you—it doesn’t necessitate language.”
Walker-Hirsch says her upcoming appearance in Richardson for a workshop on sexuality geared toward parents who have kids with special needs is a result of her work with “a very desperate parent in the Dallas area who had some difficulty with her daughter.” They talked for about half an hour, Walker-Hirsch made some suggestions and, “the problem was solved with a very, very low level of intervention.” But that experience underscored a recurring theme in conversations with North Texas-area parents of special-needs kids—they are largely left to their own devices when it comes to the topic of sexuality for their children. To help parents navigate uncharted waters, Walker-Hirsch developed a multimedia curriculum called “Circles,” used to teach what she calls “the soft skills related to intimacy.”
DIFFERENT-COLORED CIRCLES ON A FLOOR MAT represent levels of appropriate touching and distance for family members (friends, acquaintances, strangers, etc). The students literally stand on the colors and act out the correct behavior for each level. Parents can reinforce the training at home by using the mat and prepping the child or young adult for a situation. For example, if a family friend is coming over, they can talk about which color applies and go over those behaviors.
The skills work two ways: The young person learns how to treat others, and, at the same time, grows to understand what is dangerous or inappropriate from someone else.
Walker-Hirsch’s method takes care of a couple of issues that can be difficult for parents to address: the need for abundantly simple, clear direction that can be repeated and reinforced.
MARGARET REED, A GRADUATE STUDENT at TWU whose master’s thesis is a study of parents’ experiences with teaching their special-needs children about sexuality, agrees that the focus has to be on “concrete, repetitive messages.” She advises parents to use pictures when they can, and to work with other parents to discover what worked for them.”
Some self-examination also is critical, she says. “It’s important to keep [messages] positive, not shaming.” She also feels it’s important for a family to really think about its values and attitudes about sex well before it’s time to teach their kids about sex.
Reed is still looking for parents for her study, but she has already begun an extensive review of the material about sex education available to special-needs children in the North Texas area and nationwide. Her study reveals parents’ top three concerns: masturbation, sexual abuse and safe sex. And because men with Down syndrome often are unable to father children, parents of girls tend to have more concerns about the last two issues.
Kelly Drabnos, a Collin County mother whose daughter has Down syndrome agrees “the safety issue is a bigger deal with females,” adding, “The real fear is that your child would be abused because you weren’t clear …. You just have to talk about it. And you have to be vigilant. Unfortunately, the vulnerable are more likely targets.”
But sex education isn’t just about … well, sex. Drabnos says her daughter, Alana, attended mainstream classes and seemed to fathom sexual matters along with her peers. After a clear explanation of what was going to happen at her first OB-GYN visit, Alana was “pretty stoic. It wasn’t one of those situations where she was really terrified of the experience,” she emphasizes. With these children, “you just have to be very clear, very specific” about what they are to expect.
Dyer, of Easter Seals, says she took advantage of teaching moments whenever they presented themselves—while watching couples’ behavior on television, for example, she pointed out that it’s not appropriate to do everything you see on TV.
Dyer also says she questioned her son often to see how much he understood about things he picked up from friends at school. And she took every opportunity to reinforce rules. She laughs, remembering a day when she was driving her son and a girl on date and he asked from the backseat, “Mom, can I kiss her?”
Dyer’s answer: ‘You have to ask her. [And] you have to ask her before you hold her hand. Any time you’re going to touch someone, you have to ask if it’s OK.”
Great advice—for everyone.
