SEX EDUCATION FOR CHILDREN AND YOUTH WITH DISABILITIES - PART 2

TEACHING CHILDREN AND YOUTH ABOUT SEXUALITY

The vast majority of parents want to be -- and, indeed, already are -- the primary sex educators of their children (Sex Information and Education Council of the U.S., 1991). Parents communicate their feelings and beliefs about sexuality continuously. Parents send messages to their child about sexuality both verbally and nonverbally, through praise and punishment, in the interactions they have with their child, in the tasks they give the child to do, and in the expectations they hold for the child. Children absorb what parents say and do not say, and what they do and do not do, and children learn.

Of course, a great deal of education about socialization and sexuality takes place in settings outside the home. The school setting is probably the most important, not only because most students take classes in sexuality education, but also because it is there that children and youth encounter the most extensive opportunities to socialize and mix with their peers. Thus, both parents and the school system assume responsibility for teaching children and youth about appropriate behavior, social skills, and the development of sexuality. Parents are strongly encouraged to get information about what sexuality education is provided by the school system and to work together with the school system to ensure that the sexuality education their child receives is as comprehensive as possible.

This section offers some practical suggestions for how to take an active role in teaching children with a disability about sexuality. Although it is written primarily to parents, the information and list of resources should be helpful to professionals as well. The discussion below is organized by age groupings and the specific types of sexuality training that can be provided to children as they grow and mature. Although physical development is not much delayed for most individuals with disabilities, a child may not show certain behaviors or growth at the times indicated below. Depending on the nature of the disability, emotional maturity may not develop in some adolescents at the same rate as physical maturity. This does not mean that physical development won't occur. It will. Parents can help their child to cope with physical and emotional development by anticipating it and talking openly about sexuality and the values and choices surrounding sexual expression. This will help prepare children and youth with disabilities to deal with their feelings in a healthy and responsible manner. It's important to realize that discussing sexuality will not create sexual feelings in young people. Those feelings are already there, because sexuality is a part of each human being throughout the entire life cycle.

Infancy through 3 years old. Infants and young children find great pleasure in bodily sensations and exploration. Fascination with genitals is quite normal during this period and should not be discouraged or punished by parents or caregivers. Similarly, "accidents" during toilet training should not be punished or shamed, for that is all they are -- accidents, in the process of learning. When a young child holds or fondles his or her own genitals, parents need not react with harshness, for the child is merely curious and the sensation may very well be a pleasant one. (Of course, it may also be that the child merely has to go to the bathroom or that his or her pants are uncomfortable!) When a child of three holds his or her genitals in public, you may wish to move the child's hand and say quietly but firmly, "We don't do that in public." Then offer diversion -- "look at that!" or play a game such as peek-a-boo or "chase" -- to change the child's focus. Most children of three or four are capable of understanding the basic difference between "public" and "private." You can put the concepts in terms they are likely to understand, such as "being with others" or "being alone." Children with cognitive impairments may not be able to understand the public/private concept as yet. For these children, parents can begin making concrete distinctions between public and private situations, for this is how the children will eventually learn the difference.

Preschool (Ages 3 through 5). Parents are usually teaching their children the names of body parts during this period, although the process may start earlier for some children and later for others, depending on the nature of the child's disability and his or her facility for language acquisition. When you are teaching the names of body parts, it is important not to omit naming the sexual organs. Take advantage of the natural learning process to teach your child what the sexual organs are called. It's a good idea to be accurate about the names, too, just as you are when you teach your child the names for eyes, nose, arms, and legs. Boys have a penis, for example, not a "pee-pee." Being accurate and matter-of-fact now saves having to re-teach correct terminology later, and avoids communicating that the sexual organs are somehow taboo or must be referred to in secretive, nonspecific ways. Remember that children do not interpret the world from the same perspective as adults. They will not spontaneously invest the sexual organs with values or hidden meanings; these are reactions they learn from others.

During this period, most children also become intensely curious not only about their own bodies but those of others. While exploration and "show me" games may be unsettling to you, remember that healthy curiosity prompts these games. The messages you send in your reaction, and how strong and emotional your reaction is, teach your child a great deal about the acceptability of the body and curiosity itself. It's important not to overreact. Calm remarks such as "Please put your clothes back on and come inside" give a more positive message than "Shame on you! Come in here this minute!" Soon afterwards, make sure you talk to your child in simple, basic terms about his or her body and appropriate behavior. Detailed discussions of anatomy or reproduction are not necessary and, when offered to a young child, are generally met with boredom (Kempton, 1988).

A great concern of parents and professionals is that children with disabilities are more vulnerable to sexual exploitation. Therefore, one message that is important to start mentioning when children are young is that their body belongs to them. There are many good reasons for some adults to look at or touch children s bodies (such as a parent giving a child a bath), but beyond that, children have the right to tell others not to touch their body when they do not want to be touched. Likewise, your child should hear from you that he or she should not touch strangers. Children of this age should also be taught that if a stranger tries to persuade them to go with him or her, they should leave at once and tell a parent, neighbor, or other adult (National Guidelines Task Force, 1991). For more information about the issue of sexual exploitation and abuse, refer to the SPECIAL ISSUES article near the end of this NEWS DIGEST.

Ages 5 through 8. These are the early school years, when many children tend to lose interest in the opposite sex but may still continue to explore the body with same sexed friends. While this may concern some parents, again, they should try to control the severity of their reaction, for such exploration is an expression of curiosity and is natural and normal. The child's need for information about all kinds of topics -- not just the body -- increases. Socialization skills are important to emphasize and practice during this period. Children with disabilities can also benefit from activities that bolster self-esteem as they grow and develop. For example, children with disabilities should have household responsibilities that they are capable of performing or learning to perform, given their disability, for accomplishment and a sense of competency build self-esteem.

It's important during this age period to become more specific in teaching about sexuality. Up to this point, training has focused more on the social self, avoiding negative messages about the body and its exploration, and communicating positive messages ("your body is good, it's yours, your feelings about yourself and your body are good"). According to the National Guidelines Task Force (1991), some topics that may need to be addressed during this age group are:

-- the correct names for the body parts and their functions;

-- the similarities and differences between girls and boys;

-- the elementals of reproduction and pregnancy;

-- the qualities of good relationships (friendship, love, communication, respect);

-- decision-making skills, and the fact that all decisions have consequences;

-- the beginnings of social responsibility, values, and morals;

-- masturbation can be pleasurable but should be done in private; and

-- avoiding and reporting sexual exploitation.

Ages 8 through 11. Pre-teens are usually busy with social development. They are becoming more preoccupied with what their peers think of them and, for many, body image may become an issue. If we think of the emphasis placed on physical beauty within our society -- "perfect bodies," exercise, sports, make-up -- it is not difficult to imagine why many pre-teens with disabilities (and certainly teenagers) have trouble feeling good about their bodies. Those with disabilities affecting the body may be particularly vulnerable to low self-esteem in this area.

There are a number of things parents and professionals can do to help children and youth with disabilities improve self-esteem in regards to body image. The first action parents and professionals can take is to listen to the child and allow the freedom and space for feelings of sensitivity, inadequacy, or unhappiness to be expressed. Be careful not to wave aside your child's concerns, particularly as they relate to his or her disability. If the disability is one that can cause your child to have legitimate difficulties with body image, then you need to acknowledge that fact calmly and tactfully. The disability is there; you know it and your child knows it. Pretending otherwise will not help your child develop a balanced and realistic sense of self.

What can help is encouraging children with disabilities to focus on and develop their strengths, not what they perceive as bad points about their physical appearance. This is called "refocusing" (Pope, McHale, & Craighead, 1988). Many parents have also helped their child with a disability improve negative body image by encouraging improvements that can be made through good grooming, diet, and exercise. While it's important not to teach conformity for its own sake, fashionable clothes can often help any child feel more confident about body image.

One of the most important things that parents can do during their children's prepubescent years is to prepare them for the changes that their bodies will soon undergo. No female should have to experience her first menses without knowing what it is; similarly, boys should be told that noctural emissions (or "wet dreams," as they are sometimes known) are a normal part of their physical development. To have these experiences without any prior knowledge of them can be very upsetting to a young person, a trauma that can easily be avoided by timely discussions between parent and child. Tell your child that these experiences are a natural part of growing up. Above all, do so before they occur. Warning signs of puberty include a rapid growth spurt, developing breast buds in girls, and sometimes an increase in "acting out" and other emotional behaviors.

In addition to the topics mentioned above, other topics of importance for parents to address with children approaching puberty are:

-- Sexuality as part of the total self;

-- More information on reproduction and pregnancy;

-- The importance of values in decision-making;

-- Communication within the family unit about sexuality;

-- Masturbation (see discussion below);

-- Abstinence from sexual intercourse;

-- Avoiding and reporting sexual abuse; and

-- Sexually transmitted diseases, including HIV/AIDS.

Adolescence (12 years to 18 years). During this period it is important to let your child assume greater responsibility in terms of decision-making. It is also important that adolescents have privacy and, as they demonstrate trustworthiness, increasingly greater degrees of independence. For many teenagers, this is an active social time with many school functions and outings with friends. Many teenagers are dating; statistics show that many become sexually involved. For youth with disabilities, there may be some restrictions in opportunities for socializing and in their degree of independence. For some, it may be necessary to continue to teach distinctions between public and private. Appropriate sexuality means taking responsibility and knowing that sexual matters have their time and place.

Puberty and adolescence are usually marked by feelings of extreme sensitivity about the body. Your child's concerns over body image may become more extreme during this time. Let your adolescent voice these concerns, and reinforce ideas you've introduced about refocusing, good grooming, diet, and exercise. Without dismissing the feelings as a "phase you are going through," try to help your child understand that some of the feelings are a part of growing up. Parents may arrange for the youth to talk with the family doctor without the parent being present. If necessary, parents can also talk to the doctor in advance to be sure he or she will be clear about the adolescent's concerns. If, however, your child remains deeply troubled or angry about body image after supportive discussion within the family unit, it may be helpful to have your child speak with a professional counselor. Counseling can be a good outlet for intense feelings, and often counselors can make recommendations that are useful to young people in their journey towards adulthood.

One topic that many parents find embarrassing to talk about with their children is masturbation. You will probably notice an increase in self-pleasuring behavior at this point in your child's development (and oftentimes before) and may feel in conflict about what to do, because of personal beliefs you hold. However, beliefs about the acceptability of this behavior are changing. The medical community, as well as many religious groups, now recognize masturbation as normal and harmless. Masturbation "can be a way of becoming more comfortable with and/or enjoying one s sexuality by getting to know and like one s body" (Sex Information and Education Council of the U.S., 1991, p. 3). Masturbation only becomes a problem when it is practiced in an inappropriate place or is accompanied by strong feelings of guilt or fear (Edwards & Elkins, 1988).

How can you avoid teaching your child guilt over a normal behavior, if you yourself are not convinced? First, you may wish to talk to your family doctor, school nurse, or clergy. You may be surprised to find that what you were taught as a child is no longer being approached in the same way. Read the books and articles listed in the resource section at the end of this article; they offer many ideas and suggestions about this behavior. In dealing with your child, recognize that you communicate a great deal through your actions and reactions, and have the power to teach your child guilt and fear, or that there are appropriate and inappropriate places for such behavior.

Teach your child that touching one's genitals in public is socially inappropriate and that such behavior is only acceptable when one is alone and in a private place. Starting from very early in your child's life when you may first notice such behavior, it is important to accept the behavior calmly. When young children touch themselves in public, it is usually possible to distract them. During adolescence (and sometimes before), masturbation generally becomes more than an infrequent behavior of childhood, and distracting the youth s attention will not work. Furthermore, it denies the real needs of the person, instead of helping him or her to meet those needs in acceptable ways (Edwards & Elkins, 1988).

There are many other topics that your adolescent will need to know about. Among these are:

-- Health care, including health-promoting behaviors such as regular check-ups, and breast and testicular self-exam;

-- Sexuality as part of the total self;

-- Communication, dating, love, and intimacy;

-- The importance of values in guiding one s behavior;

-- How alcohol and drug use influence decision-making;

-- Sexual intercourse and other ways to express sexuality;

-- Birth control and the responsibilities of child-bearing;

-- Reproduction and pregnancy (more detailed information than what has previously been presented); and

-- Condoms and disease prevention.

Many resources are available about each one of these areas to help you plan what information to communicate and how this might best be communicated. Don't forget that your family physician and school health personnel can be good sources of accurate information and guidance. Depending on the nature of your child's disability, you may have to present information in very simple, concrete ways, or discuss the topics in conjunction with other issues. Your responses will convey your beliefs and reflect your standards of behavior. Remember, young people are receiving information from other sources as well. It may be essential to include the entire family in your resolve to be frank and forthright, for a lot of information comes from siblings. Children may feel more comfortable asking their brothers and sisters questions than directly asking you.

Because sexuality involves so much more than just having sexual intercourse, parents will also need to devote time to talking with their child about the values that surround sexuality: intimacy, self-esteem, caring, and respect. Encourage your child to be involved in activities with others that provide social outlets, such as going to the community recreation center on weekends, going to sports events or a movie, joining a club or group at school or in the community, or having a friend over after school. These interactions help build social skills, develop a social network for your child, and provide him or her with opportunities to channel sexual energies in healthy, socially acceptable directions (Murphy & Corte, 1986).

[Click on this link to go to the suggested resources for this section.]

HOW PARTICULAR DISABILITIES AFFECT SEXUALITY AND SEXUALITY EDUCATION

As has been said, the development of sexuality takes place in all youngsters. Consequently, whether your child has a sensory, orthopedic, mental, emotional, or learning disability, he or she has a genuine need for accurate information about sexuality, as well as the need to accept sexuality as a part of his or her identity.

The type of disability that a child has, however, may affect the way in which information should be presented. The disability may also affect what type of information is presented. For example, a person with mental retardation may need information presented in small amounts and in simple, concrete, and basic terms. This person may also need the family and caregivers to stress the distinctions between public and private behavior, as well as how to identify who is a stranger and who is a friend. On the other hand, a young person with a visual impairment would be capable of understanding a wide range of concepts and facts about sexuality but may need materials presenting this information through touch or hearing, or through braille or large print materials. A young person with a physical disability would be similarly capable of understanding material about sexuality, but would not need the information to be presented in alternate formats (e.g., braille or cassette). He or she might, however, need specific information about how the physical disability affects expression of sexuality and participation in a sexual relationship. Young people with learning disabilities generally do not require specialized materials or formats to learn about sexuality. They may only need some modification to the pace and manner in which information is presented and increased emphasis on social skills.

Thus, tailoring the pace and presentation of information to the needs of each young person is very important. To do so effectively, parents and professionals will need to take into consideration:

-- how the child's particular disability may affect his or her social-sexual development;

-- how the disability affects the child's ability to learn information about sexual issues; and

-- what extra information may need to be provided to address any specific characteristics of a particular disability.

Understanding how a particular disability (e.g., Down Syndrome, deafness, etc.) affects social-sexual development, how it affects the learning process, and how it affects sexual expression can help parents and professionals more effectively approach talking to and teaching children about sexuality.

Fortunately, there is a variety of information available in regards to sexuality education for individuals with particular disabilities. Space limitations in this NEWS DIGEST prevent us from discussing these issues in the detail that parents and professionals -- and, indeed, the individual with a disability -- need in order to adequately prepare youth for adult life and responsibilities. Therefore, this section lists resources that can help parents and professionals become informed themselves. This information can be of invaluable help in planning and delivering sexuality education that meets the specific concerns of individuals with particular disabilities. This list is organized by type of disability.

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Well, you have just read the second of the three sections on Sex Education for those with Disabilities. It was just too big to fit into one web page. Please click on the following link to go the the next section. I think you will find it worth while to do so. [Click on this link to go to the next section of this three part series on Sex Education.]