Presentation for July 23, 2008

SEXUALITY AND TEENS WITH DEVELOPMENTAL DISABILITIES

By Dave Hingsburger, Debra Snell VanNoort, and Susan Tough: TASH Newsletter, May 2000.

"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.

5. 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.

6. 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

Some of you will hear a dream for a life lived in a gay relationship. It may seem like the world is asking you to climb another mountain, but remember that people with developmental disabilities are a diverse community - and some of them are gay. These dreams are just as real and just as important to your child

7. Tight jeans and plunging necklines.

Who hasn't walked by a couple of teens looking at clothes in a mall and heard them say, "That's just way too retardedl" and burst into laughter? Kids judge each other, rightly or wrongly, by what they wear and how they present themselves to the world. Your kid may want to wear fashions that you find abhorrent. Your kid may want to get pierced, or have a tattoo. Well, you have the right to set boundaries the same as any parent does. Your kid will just have trouble defying you. It's hard to run down to the mall to get your nose pierced if your dad has to drive you. Try to be open to how your child wants to express his or her taste in clothes.

You may think your little boy with Down Syndrome looks cute in a tie. The other kids think he looks "goonie". By being aware of fashion and keeping your kid up to date in what they wear, you help to give your child a big step up in school. Remember, he or she is already getting teased for being different, adding to that doesn't help.

8. Create social situations by accepting other people with disabilities as potential partners.

Many parents who have fought long and hard for full inclusion, who have avoided any hint of segregation, who have lodged law suits in order to free their children, find adolescence a trauma. It is hard to see other kids who once willingly played with your child, move on. It is hard to see your child look out at typical peers, and see themselves left behind. It is hard to see your child socially alone. One mother said. "I was desperate. She was so lonely. One night, against my better judgment I put her in the car and headed off to Special Olympics. I cried myself to sleep that night. She had such a good time. She seemed to really relax and have a good time. In one night she made two friends that she wants to call and visit." The fight for inclusion should have meant the fight for options - all sorts of them. But somehow the "option" of hanging out with others who have disabilities became wrong. Your child needs to find people with whom he or she can find partners and begin to date. It is highly politically incorrect to suggest that we notice a fact: when most people with disabilities get married, they marry another person with a similar disability. The fact is that People First and other self-advocacy organizations are often places where people with disabilities meet their future wives and husbands.

One of the biggest problems that some people with developmental disabilities have is that they are uncomfortable around others who have disabilities. How mentally unhealthy is that? Being uncomfortable around people who are "like you" is a massive self-esteem problem!

This isn't to say that people with disabilities should be segregated together. It's just to say that they shouldn't be forced apart, either. If your child is going to have a chance at a real relationship, she has to love herself first, then have the opportunity to love others. One dad reported, "I think I denied my son the opportunity to be with others who had disabilities and in that way I could keep him celibate. I knew in my heart that he wasn't going to date the teenage girls down the street. It was an odd way of denying him sexuality, while pretending I was getting him what was rightfully his. And now he's grabbed his sisters breast and pats his mom on the butt and leers at her. I'm a man. I should have seen this coming."

9. Seek out education and educational materials.

There are great books and curricula on teaching your child about sexuality. Make sure it's up to date about issues regarding AIDS and other STD's (sexually transmitted diseases). Urge someone to teach a class, and get your child into the class.

10. Support relationships when they happen.

When your son or daughter meets someone, greet him or her and get to know his or her family.

11. React calmly.

When you find a condom in your son's wallet, put it back.

12. You'll need the hanky.

When your daughter marries: cry joyously!

SEXUALITY AND TEENS WITH SIGNIFICANT DISABILITIES

Dave Hingsburger wrote the following in the May 2000 TASH Newsletter:

Many parents of children with significant disabilities ignore the fact that their child is becoming an adult. With all the work that needs to be done to just care for their child, sexuality seems like a needless worry. While it may be true in most instances that the greater the disability, the less likely an individual will form a relationship that leads to sexual expression, even so there are two facts that parents need to keep in mind when raising a child with a significant disability.

FACT ONE: Parents need to realize that their child is at risk to be sexually victimized. In fact, the greater the disability, the greater the risk. Given that your child can't always use words to tell you that he or she has been hurt, you need to think about how to protect your child and how to equip your child to protect him/her against abuse.

One fact about sex education is that it can be done with all people with disabilities, across the entire disability spectrum. Your child may not need to learn about sperm, eggs, and fallopian tubes, but they can learn two important concepts.

1. Boundaries: What is acceptable caring and touching and what is outside of that boundary.
2. "No:" How to say "no" in a non-verbal but assertive way to touching that is beyond the ordinary or touching that makes your child uncomfortable.

These are very teachable skills to even those with significant disabilities. One tool you can use to assist with this is the Protocol for Personal Care, developed for use with individuals who have significant care needs. It is available by contacting Community Options at (250) 380-6363. This may be one of the most important contacts you make.

FACT TWO: The drive and need for intimacy is greater than the drive and need for sex. Change the question from, "How does my child meet his or her sexual needs?" to "How do my child's intimacy needs get met?" We can work at ways that children can get their intimacy needs met. Remember, you need to develop ways that your child, when outside the family or in care, gets his or her intimacy needs met by care providers. It is absolutely inappropriate that other use touch as the primary way of meeting your child's intimacy needs. There are so many ways of doing this that one only needs to be creative. Don't forget the option of a dog, a cat, or a rabbit as a source of unrestrained and appropriate intimacy. One group home we know of has a Newfoundland dog, Laura, as a pet and she is the source of much love, touch, and comfort to individuals with significant disabilities who live in the home. Laura just be a big old dog to you, but seeing her lay down on the floor and curl around a young man with a disability is beautiful (and noisy because both snore so loudly you have to turn up the volume on the television, but still beautiful).

Visit Dave Hingsburger's blog at Chewing the Fat

ABUSE @ THE WASHINGTON SCHOOL FOR THE DEAF

VANCOUVER, Wash. -- Scores of parents shared the haunting secret. Most walked away, silently, with their wounded children. For decades, officials at the 115-year-old Washington School for the Deaf have ignored or discounted a persistent pattern of sexual abuse.

It took a string of five reported student-on-student rapes two years ago to spur safety improvements at the insular, state-run school in Vancouver, perched above the Columbia River Valley.

Read the entire store in the Seattle Post-Intelligencer

SEX ED SLIDESHOW (Courtesy of Sexuality and You)

Sex Ed Slideshow

GUIDELINES FOR TEACHING SEXUAL HEALTH WITH STUDENTS WITH INTELLECTUAL DISABILITIES

Repeat, repeat and repeat again. It is important to use repetition when teaching youth with intellectual disabilities. You can repeat the same concept from a few different angles to maximize the potential for understanding. Each lesson should begin with a review of the previous lesson(s).

Stay concrete with your examples. Many students with intellectual disabilities do not comprehend well abstract concepts such as love, or that a pregnancy results in having a baby nine months later. The examples used need to be concrete, in the present and almost tangible. Using pictures and videos is a good method.

Don’t overload with information. Going slower with the information is better. If you had wanted to do two sessions of sex education with the group, then schedule four sessions so that you have enough time for the students to process the information, ask questions and have discussions. You can also leave a few days between each lesson so that students have the time to think about the information.

Assume that the students have not had any sex education before (unless you know otherwise). You should start with the basics.

Appreciate that the students ARE sexual and this may be expressed in various ways. For most students, talking about sex will not encourage them to try it. It will just make them more comfortable and informed on the subject for when the moment(s) happens.

Teach the right to refuse. Disabled people can sometimes be trained to be quite compliant.

Remember that context is everything! How does the information fit into their real life? Discuss social situations as examples.

Help youth to practice appropriate affection, with whom and where.

Discuss masturbation. It is important that all students understand the concept and value of masturbation (unless your values are in conflict with this). Students need to know that this is healthy and natural and is entirely appropriate if they are in the right place (private place).