You may be surprised to find an
article on Down syndrome and sexuality as few doctors bring this up and it is
not often included in the typical prognosis and diagnosis of Down syndrome. You
shouldn't be surprised, however.Common perceptions are that people with
disabilities do not have either interest or ability for the adult relationships
the rest of us take for granted. This is, however, completely false.
1. Sexuality is a Part of
Everyone's Life
When we talk about sexuality and
Down syndrome, we are not just talking about teenagers and adults. All humans
go through many different stages of sexual development, starting when they are
babies.
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2. The Decline of
Institutionalization Led to More Opportunities for People with Down Syndrome
Up until the 1960s and 1970s,
people with Down syndrome were most often institutionalized in single sex
buildings, and did not have much opportunity to interact with the opposite sex
at all. Now, people with Down syndrome have independence and opportunities
available to them, and it only follows that they should also want what is
available to all other members of society - the right to develop and pursue
meaningful relationships.
3. Additional Difficulties Exist
for People with Down Syndrome in Relation to Sexuality
There are, of course, added
difficulties when we talk about people with Down syndrome and sexuality. It is
probably obvious that there is a lot more prejudice towards people with Down
syndrome who engage in sexual behavior.
Parents have a lot more anxiety
about it, too. There is good reason for this anxiety, unfortunately. People
with Down syndrome have cognitive deficits that make them more likely to be a
victim to sexual abuse, unwanted pregnancies, or sexually transmitted diseases.
Women especially are vulnerable to issues of abuse and exploitation. They may
not know the difference between "good touch" and "bad
touch". They may not know how to say no if something is making them
uncomfortable. They may be lonely and willing to put up with inappropriate
behavior in order to get attention.
The isolation and issues with
communication that many with Down syndrome face may make it harder for them to
access sources of support that will help them make decisions that are right for
them.
4. There Are Ways to Prevent
Exploitation and Abuse
The best way to help young people
with Down syndrome be smart about their sexuality is to start educating them
when they are still young. Sexual education for kids with Down syndrome should
start in junior high, and should focus on personal safety.
Kids should be taught the
difference between good touch and bad touch, and how to "just say no"
to advances or touching they don't want. A concept called "Circles"
can be used for older or more cognitively advanced kids. Circles represent
different levels of personal relationship and intimacy. Students learn what the
appropriate touching behaviors are for each level. They then learn that
sometimes a friend might want to be closer than they want, in which case they have
to tell them very clearly "STOP."
Sex education should be
individualized for each student with Down syndrome depending on their ability
to understand the material. It is important, however, to cover all the things
that would normally be covered in sex ed, because chances are, teenagers with
Down syndrome will need to know these things sooner rather than later, in order
to keep themselves safe.
The more you talk openly and
honestly with your Down syndrome teenager or young adult about sexuality, the
safer they will be. The more they understand, the better you will both feel
about this aspect of their lives.
Dating is also something that
teenagers with Down syndrome will often want to try out for themselves. There
are certain social skills required to be able to date, and these skills can be
taught if needed.
5. People with Down Syndrome Can
Get Married.
Marriage is by no means common
for people with Down syndrome, but it is still growing increasingly more
common. Many scoff at the idea, and wonder how two people who still need aides
to function in the world could live together and manage household tasks, but it
can be done.
The Wall Street Journal did an
article addressing some of the issues in marriages with Down syndrome.
"There is a growing sense of
the need to catch up, with junior highs and high schools starting to offer
sex-education and social skills courses tailored to teens with Down syndrome
and other cognitive disabilities. "There is no reason to think that they
have a different libido," says William I. Cohen, who runs the Down
syndrome Center of Western Pennsylvania at Children's Hospital of Pittsburgh.
"They want what we all want: friendship, companionship, love."
("A Young Woman Plans Her Wedding," Amy Marcus, Wall Street Journal,
October 2005)
Marcus also reports on a
discussion one young woman with Down syndrome had with her mother on her
upcoming marriage to another young man with Down syndrome:
"At one point, she raised
the issue with her daughter: Didn't she worry that after they married, Ms.
Bergeron might have to take care of Mr. Desai?
"Don't you take care of
Daddy? Doesn't Sujeet's mother take care of her husband? Isn't that what wives
do?" her mother says Ms. Bergeron responded. "She put me in my
place," Mrs. Bergeron said. "I backed off."
Fertility Issues
Most males with Down syndrome are
infertile (although not all). Most females have reduced fertility but are still
quite fertile. It will be important to teach the couple about how to use birth
control responsibly.
Romantic love and relationships
can be a wonderful thing. There is no reason why people with Down syndrome
should have to miss out on one of life's biggest perks, especially when they
are biologically and psychologically capable of it. You just need to take some
extra precautions to make sure your loved one with Down syndrome is prepared by
educating them on sexuality and for all that this might entail.
And to help you prepare for this
as well as many other common issues with your Down syndrome loved one, download
my free guide "12 Tips for New Moms of Down Syndrome Babies". And to
find additional free resources an excellent site is http://www.downsyndromehope.com.
Visit it today to help you and your Down syndrome loved one lead a self
sufficient life together.
