BUT I THOUGHT ...

SEXUALITY AND TEENS WITH DEVELOPMENTAL DISABILITIES

By Dave Hingsburger, Debra Snell VanNoort, and Susan Tough.

 

"The police are here and they are saying awful things about my son ..."

"My daughter is pregnant, how can this be? ..."

"I thought my child would be safe from abuse, my God, it was her teacher! ..."

"I'm not up to this, my son has announced that he wants to get married... "

The Sexuality Clinic at York Central Hospital in Richmond Hill, Ontario, Canada, has seen a rapid increase in referrals for teenagers who have made sexual mistakes. Many of these teens live in homes with their families, attend local schools, and participate in community events. In 1981, the first year of service delivery, the Sexuality Clinic had a referral of only one teenager. This year, almost, 20 years later, a full 25% of all clinic referrals are for teenagers with developmental disabilities. As we design approaches for working with teenagers, clinic consultants, in the heat of frustration, often make the same clinical observation: "This is just stupid stuff!" This comes from the realization that the behavior that led to the referral is often fairly typical for hormone-driven teenagers, but it also involves either bad judgment (on the part of the individual with a disability), or a panic stricken reaction (on the part of parents or school personnel).

A number of these teens will be given a label that will have them considered "dangerous" for the rest of their lives, when, in reality, they are simply making mistakes that  are particular to a specific time of human development. We believe that it is possible to prevent some of these behaviors from occurring. The Sexuality Clinic is now actively promoting twelve recommendations for parents of preteens.  A sidebar which contains additional information for parents of children with significant disabilities appears at the end of this article.

1. Sexuality is an issue.

Many parents of children with developmental disabilities are poorly prepared for sexual interests developing in their child. One parent was told by her child's doctor that her child's sexual organ was "just a flap of flesh" that had no meaning for the child. Being told, or coming to believe, that one's son or daughter will be a "perpetual child" or a "sexual innocent" is dangerous. By not seeing that a child is growing toward adulthood, parents may not feel moved to begin teaching boundaries. In fact, most of the Sexuality Clinic's referrals are "boundary violations" brought on by the impulse of a moment.

Parents need to realize that their child needs to be very aware of body changes, privacy rules, personal space and distance, relationships, and permission. Most parents of typical children teach these rules and boundaries naturally, through chance and circumstance as their child grows. But parents of a child with a disability may believe that it is OK (as occurred in one of our cases) to have their teenage child sit on the babysitter's lap while watching TV at night. When that same child reached up and touched the babysitter's breast, everyone was shocked. 

Boundaries of body (private parts), of space (private places), and of topic (private subjects) need to be emphasized, and adult forms of affection and closeness need to be developed.

2. Take a look at your child's social circle.

Your child is getting older. So should his or her friends. Sometimes it's easy to slip up and say, 'Well his mental age is five, so it's natural for him to play with little kids." Leaving your child who is approaching puberty with a social circle of younger children is asking for trouble. The Clinic has just supported a young family through an arduous court battle wherein their child was charged and found guilty of "sexually offending against a youngster". It seems that the young man was simply "playing doctor", but unlike his typical peers who are engaging in exactly the same behaviors, his experimentation was with very young children.

It isn't cruel to ensure that your child is not socializing with children much younger than him or herself - no matter how innocent it seems. Your child needs to socially advance and not be left in situations of danger. Ensure that others understand this as well. Several years ago the Sexuality Clinic dealt with a  situation where a young man in his late teens was in Sunday school with young children. He went into the bathroom to watch a little girl, with whom he'd been playing, use the toilet. She saw nothing wrong with this and told her parents in casual conversation what had happened. Her parents did see something with what the young man had done.

The young man's parents had assumed that their son was in a class with other teens, and were shocked to find out that the Sunday school teacher had decided that he should be placed with little children. The Sunday school teacher explained her decision by saying, "He's just a child in an adults body".

3. Increase supervision by taking a look a little more often.

As soon as hair begins to develop on the body, it's time to become vigilant. When your child is socially advanced with others, take a look a little more often. Make sure your child feels your presence and feels your supervision. Let him or her know that you can walk into a room where he or she is entertaining a friend at any 'time. Don't say to yourself, "It's not fair to supervise her more during the teen years." Trust that parents of teens without developmental disabilities are doing exactly the same thing. And by the way, parents of kids without disabilities are worried about exactly the same consequences of sexual play.

One parent was so relieved that her daughter finally had a friend, that she let her daughter and a boy from her class go into her bedroom, and left them there for hours at a time. She had thought that her daughter, because of her disability, was asexual. The young male visitor, who did not have a disability, did not make the same assumption. In talking to us afterwards, the mother said' "You know, I would never have let my other daughter have a boy in her bedroom at that age. I wonder why I thought Shannon was different? 

4. Recognize that sexual development and curiosity is a normal developmental process.

Your child doesn't need medication, surgery, or punishment

Your child needs guidance.

Every parent of every teenager has wished that their child's sex drive would run out of gas. Some doctors have advised parents to put their teenage boys on sex drive reducing medications (or medications with sex drive reducing side effects) as a way of dealing with (or not dealing with) their child's burgeoning sexuality. Others have suggested sterilizing young women with disabilities as a way of getting around the "messiness" of menstruation, These ideas are old, tired, and wrong. Your child is going through a normal developmental period. As hard as it seems, he or she will get through it and grow into adulthood.

Living a "normal" life is a hard won battle for kids with disabilities. Your child will now begin a "normal" battle with you. They will have more than a sex drive. They will have a drive for relationships with others. They will have a drive for intimacy with another. They will want to establish themselves as separate from you. We have three bits of advice: Let Go . . . Let Learn... Let Live. This doesn't mean that you just let your child go through puberty and awakening sexuality without guidance. They will need your input. If your eyes are set on guiding them to a fulfilling life full of relationships - you've set your sail correctly - and your guidance will be fair. If your eyes are set on a life without relationships - your guidance will be interference.

6. Allow adolescent dreams: marriage, house, babies.

These used to be "impossible dreams" for people with disabilities. These were primarily about relationships. Many doctors have told parents that their child will never grow up, get married, and/or have children. Parents of children with disabilities have been advised to "grieve the loss of  the normal child, and come to accept the child with disabilities.

Many parents say that the hard­est, thing about having a child with a disability is the realization that they will never walk down the aisle, or hold a grandchild. Well hold on! The world has really changed. Many people with disabilities have formed relationships, and have parented, and done so successfully. When your child dreams out loud about his future, let him. When she talks about getting married and having children, let her. Let him or her point to a big house with a white picket fence and express his or her desire to live there. Even if your child never does get married or have children _ the dream is still wonderful. It's an honor to share the dreams of your child. It's cruel to crush them.

One mother, fearing that she'd set her child up for failure, kept telling her daughter that dreams of marriage were inappropriate. (Inappropriate?) She ended up by alienating her daughter. No, her daughter didn't get married. No, her daughter doesn't have a boyfriend. The fact isn't relevant. What's relevant is that your child is letting you see into a corner of her heart. Some of us have had dreams that have guided us through our lives - getting what we dream for isn't as important as having the dream.

I5. Know when to be "askable".

Adolescent body changes are scary. Know when to intervene. When your child is beginning to get erections, or is developing breasts, become "askable". For kids with disabilities being "askable" might be slightly different than for parents of typical teens. Your child might not have the language or the assertiveness to ask these questions. You may need to see a teachable moment and set up the situation by actively inviting questions. "I've noticed that you like looking at pretty girls when we go for a drive. Would you like to ask me any questions?" You can also develop your child's sexual self-esteem by affirming the pleasurable aspects of being an adult, while setting up a discussion. Saying things like "It feels nice when that good-looking guy at the bank flirts with you, doesn't it? Do you want to talk about boys?" promotes discussion as well as shows that you are willing to talk about their sexuality in positive terms