Sex and relationships: talking to developmentally delayed teens.
"My teenage daughter is very friendly with boys. She is developmentally delayed and I'm worried she'll get into trouble. "
"My son with Down syndrome is dating a young woman who is disabled and they want to get married. I don't think they should have children. What do I do?"
The issues surrounding sexual activity and masturbation are difficult for parents and teens to discuss, and they are especially difficult for families of adolescents who are mentally retarded. Educating a child with a developmental disability about appropriate social sexual behavior, adult friendships and possibly intimate relationships is a lifelong process, a difficult, but important, task that will help your child attain as much independence or normalization as possible.
Our society has come a long way in this century, from believing that all individuals who are mentally retarded should be institutionalized, to understanding that young people with disabilities have sexual feelings and concerns, and enjoy intimate, loving relationships. Unfortunately, we do not always prepare them to deal with their sexual feelings or our society's confusing messages about acceptable social sexual behavior.
For the developmentally-normal child, appropriate social behaviors are usually learned at a young age. The child learns from mom or dad when and whom it is okay to hug, kiss, or shake hands with, and he or she also learns from the reactions of the other person if the interaction was acceptable. Most children with developmental disabilities have difficulty learning from these social cues and need to be taught specifically which interactions are acceptable and in which situations.
Behaviors such as hugging a new acquaintance, which once were acceptable, are no longer appropriate for teens and may be misconstrued as sexual. Although we may be more comfortable treating the adolescent with a developmental disability as a child, we need to promote personal growth and independence by teaching appropriate adult behaviors. As an additional benefit, this will help the child avoid exploitation.
The process starts by teaching the child or teen the difference between public and private. This is a difficult distinction for children with disabilities because they often have a caretaker helping them in private situations. They need to be taught the difference between "good touches" or "caregiver touches" and touches that are uncomfortable, sexual or hurtful. As caregivers, we should model appropriate behavior and praise good behavior. Additionally, we need to teach what kinds of touches that are appropriate for various relationships. Your teen with developmental disabilities must learn what touches are acceptable in close friendships and in dating relationships. Most importantly, we need to teach them when to say, "No."
Many special sex education programs nationwide teach acceptable and non-acceptable touches and behaviors using pictures, repetition and practice. The pictures depict young men and women in acceptable positions (holding hands and touching shoulders) and unacceptable positions (touching breasts or other private areas). They also show facial expressions indicating comfort or discomfort. These programs can be helpful adjuncts to your ongoing education at home. Check with your local disability group for references, or, for a resource bibliography, contact Sexuality Information and Education Council of the United States (SIECUS) at (212) 819-9770, ext. 304. SIECUS also has a web page at http://www.siecus.org.
Masturbation is a common concern for parents. It's normal for everyone, including a teen with a developmental disability. The teen may need to be taught when and where masturbation is appropriate. Telling him or her to do it in private is not enough Teach him or her where in the home it is appropriate. You may even need to teach him or her to lock the bathroom door so that no one walks in. Always be calm, patient and matter-of-fact when discussing masturbation so it is understood that it is normal.
STARTING TO DATE
It is very difficult for parents to envision intimate relationships and even marriage for their teen with a developmental disability After years of over-protection, parents still see their special needs teen as childlike. Teens and young adults with developmental disabilities want friendships, warmth, approval and affection just like the rest of us. They need social outlets to avoid loneliness. Some will find one special person with whom they want to be close, and even intimate. We need to be supportive.
When your teen begins to date and later plans an intimate relationship, he or she will need guidance with choices about sexual activity, contraception and even marriage. These can be extremely difficult issues for parents to confront. Is the teen ready or mature enough, will he or she make good choices, and be able to handle the demands of marriage? Actually, the teen may function better with a companion. Guidance in the day-to-day functions of life would still be needed. It is important, all the same, that the young adult know that he or she has the right to make his or her own choices.
Marriage and intimate relationships suggest the potential of pregnancy, and many parents entertain the possibility of sterilization. This delicate and controversial issue needs to be addressed with utmost care. Frequent conversations about the joys, frustrations and responsibilities of children will help you understand your daughter's desires and expectations. Most adults with mental retardation give birth to developmentally-normal children unless a chromosomal abnormality is present.
Be careful in discussing this issue with your special needs teen. Telling her that having a child with a developmental disability is not desirable is denying her importance and value in life. If your daughter wants to have children, discuss these issues with her physician and approach them with care. And don't forget the boys -- even though they don't bear the children, they still need the same education and discussion.
The decision about sterilization should be your teen's to encourage autonomy and independence, but each young adult with special needs is unique. Families and physicians can assist and participate as warranted in the decision-making process. In lieu of surgery, very effective forms of birth control like Depo-Provera [R] are available.
Sexuality issues are extremely difficult for parents of a teen or young adult with a developmental disability. I encourage parents to talk With their special needs child about all these issues, encouraging independence and normalization as much as possible. Just Between Us, written by Thomas Elkins, M.D., and Jean Edwards, D.S.W, provides excellent guidance on these issues. It is available from Pro-Ed for $14 plus shipping and handling at (800) 897-3202.
Pamela S. Murphy, M.D., is a pediatrician and an associate of David Hirsch, M.D., at Phoenix Pediatrics Ltd., in Phoenix , Arizona. She specializes in adolescent health care of children with special needs.
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|Title Annotation:||The Age of Temperamental Teens|
|Publication:||The Exceptional Parent|
|Date:||Jul 1, 1997|
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