SESA - Spring '02 Reference Shelf - Sexuality and Puberty
By Dave Hingsburger, Debra Snell VanNoort and Susan Tough
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 twenty 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 a realization that the behavior
that led to the referral is often fairly typical for hormone-driven teenagers,
bit it also involves either bad judgement (on the part of the individual with
a disability) or a panic-stricken reaction (on the part of school personnel
or parents).
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 pre-teens. A sidebar which contains additional information for
parents of children with significant disabilities appears at the end of this
article.
12 Recommendations for Parents of Pre-teen Children with Developmental Disabilities
1. Sexuality is an issue.
Many parents of children with developmental disabilities are poorly prepared
for sexual interests developing in their children. One parent was told by
her doctor that her child’s sexual organ was just a “flap of flesh”
that had no meaning for her child. Being told, or coming to believe, that
one’s son or daughter will be a “perpetual child” or is a “sexual
innocent” is dangerous. By not seeing that a child is growing towards
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 when watching
television at night. When that same child reached up and touch 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 think, “Well, his mental age is 5, so it’s natural
for him to play with little kids.” Leaving your child, as a young teen
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 seemed 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 is not cruel to ensure that your child isn’t socializing with kids
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 about what had happened. Her parents
did see something wrong with what the young man had done. The young man’s
parents had assumed that their child was in a class with other teens and were
shocked to discover 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 adult’s 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 engaged with others, take a look a little more
often. Make sure that 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 may be entertaining
a friend at any time. Don’t say to yourself, “It’s unfair 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 for 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 would leave
then for hours at a time. She had thought that her daughter, because of her
disability, was asexual. The young male visitor, who didn’t have a disability,
did not make the same assumption. In talking to her afterwards, the mother
said, “You know, I would have never let my other daughter have a boy
in her bedroom at that age. I wonder why I thought that Shannon was different?”
4. Recognize that sexual development and curiosity is a normal process.
Your child doesn’t need medication, surgery or punishment. Your child
needs guidance.
Every parent of every teenager has wished that his or her child’s sex
drive would run out of gas. Some doctors have advised parents to put their
teenaged boys on sex drive reducing medications (or on a medication 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 may seem, he/she will
get through it and grow into adulthood.
Living a “normal” life was 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. That doesn’t mean that you just let your child
go through puberty and 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 not set on a life without other relationships – your guidance will be interference.
5. 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 other teens. Your child may not have the language or the
assertiveness necessary 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.
6. Allow adolescent dreams – marriage, house, babies.
There 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 kids with disabilities have been advised to “grieve the loss of the
normal child and come to accept the child with the disability.” Many
parents say that the hardest thing about having a child with a disability
is the realization that they won’t ever 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 or having children, let her.
Let him or her point at a big house with a white picket fence and express
his or her desire to live there.
Even if your child never does marry or have kids, 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’s set her child up for failure, kept
telling her daughter that dreaming of marriage was inappropriate. (Inappropriate?)
She ended up by alienating her daughter. 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.
Some of you will hear of 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.
(Forgive the absolute honest representation of our culture in this example.)
Who hasn’t walked by a couple of teens looking at clothes in a mall and
heard them say “That’s just way too retarded,” and then burst
into laughter. Kids judge each other, rightly or wrongly, on 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. Try to be open to how your child wants
to express his or her tastes 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 with 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 inclusions, 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 socially
alone. One mother said, “I was desperate. She was just so lonely. One
night, against my better judgement, 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. In one night she met two friends who 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. That fact is that when most (emphasis on
most) people with intellectual disabilities get married, they marry another
person with a similar disability. The fact that People First and other self
advocacy organizations are often places where people with disabilities first
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 teenaged 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 sister’s 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 for teaching your child about sexuality.
Make sure it’s up to date about issues regarding AIDS and other STDs
(sexually transmitted diseases). Urge someone to teach a class, and get your
kid 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.
Permission to reprint granted by TASH: 29 W. Susquehanna Avenue, Suite
210, Baltimore, MD 21204; Tel:(410) 828-8274; Web site at http://www.tash.org
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