HARD TO HEAR BUT...

This weekend I attended a seminar put on by the Down Syndrome of WI and the Down Syndrome Clinic of Children's Hospital.  They do a seminar usually in the fall and spring, and all of the ones I have attended have been excellent.  Topics over the years have been potty training, behaviorial/ compliance issues, IEP issues etc.  

I am very thankful these resources are available to us.

The topic for this past weekend was one I have been avoiding and in denial over for the past few years: Sexuality and Prevention of Sexual Abuse.  

It is very scary to think about the challenges our boys might face going through puberty and then as adults.  Now they are cute little boys who act like little boys.  As with my 3 older typical kids, it's hard to think of them growing up and not being as easy to relate to and watch over.  You know the old saying: "Little kids, little problems.  Big kids, big problems."  Plus the special needs aspect just adds a whole new layer we didn't deal with for our older kids.

So I put on my brave face and attended the seminar this weekend. It was excellent and gave me much to think about.  Some of it was hard to hear but was still very valuable information.

Here are some of the main points:

1. Two common myths that surround people with Down syndrome that cause the area of sexuality to be sometimes difficult and tense to deal with.

a. MYTH #1 People with Down syndrome are asexual.  Sexuality is not an area of life that they will ever have to deal with.  Believing this myth means people with Down syndrome don't get access to good information and support to help them navigate through the minefield of emotions and feelings they have.  It also sets them up to be vulnerable to abuse because they may not know what is safe and acceptable behavior.

b. MYTH #2 People with Down syndrome are "oversexual", thus causing problems and concerns.  Believing this myth puts people with Down syndrome at risk for having their behaviors misinterpreted when it may just be an innocent behavior with no bad intent behind it.  And there is also the risk of them not getting good information and support to help them navigate and learn appropriateness in this area.

2. Sexuality feelings and bodily changes often follow chronological age, not developmental age.  This means people with Down syndrome might start puberty way before they have the ability to understand the changes that are happening to them.  This makes education in this area a challenge and one that will require lots of adaption to make it something they can understand.

3. People with intellectual disabilities are sexually assaulted SEVEN times the rate of people without disabilities.  This is scary!  Here are some reasons people with special needs are so vulnerable to sexual abuse:
a. Isolation and deprivation of attention and affection- not a lot of friends.  Any attention is better than no attention.
b. Lack of  Education:Not aware of rights, Not educated about abuse, Not educated about their body, boundaries, healthy relationships etc.
c. Dependent on Others- they need people in their lives to help them function.  What if a bad person tries to act like they are there to help them?
d. No Sense of Privacy because so many people have been involved in their lives in some very personal areas of life.  This sets them up to think anybody can be involved in private areas of their lives.
e. Learned compliance.  We work so hard to get our children with Down syndrome to listen and obey.  The negative side of this is if they think they can/should trust and listen to anybody.
f. Lack of control of life choices.  People with Down syndrome are use to having decisions made for them.  This leaves them vulnerable to letting someone else control this area of life too.
g. Everybody is a friend.  People with Down syndrome may lack an understanding of different levels of relationship with people.  Everyone is "love" worthy which sets them up to be fooled into being loved when it could really be abuse.

So given this information, what were my take-aways from the seminar?

1. We need to start educating the boys about body parts, privacy, and safety.

2. We need to educate them that only certain people are allowed to be involved with them in a personal way for hygiene reasons and health care reasons. 

3. Keep that hygiene/health care circle of access as small as possible as much as you can.  This means as few people as possible being involved in private personal care.

4. We need to start more private personal care in the home: closing doors, etc.

5. We need to identify what types of affection for what levels of relationship are appropriate for our boys. This means figuring out who gets hugs, who gets a kiss, who should be side-hugged vs. frontal hug. Who should be a high-five or wave.  This might not be needed for them at age 9 yet because again, they are sweet little boys, but down the road, a hug or kiss from a 15 year old pubescent boy might not be a very good choice.

6. We need to be aware that the downside of constant demand for compliance is our child might think its ok to obey any adult or feel like he doesn't have the power or control to say "No" to a dangerous situation.  

Lots of good information although a bit scary to think about.  

This information was provided by Terri Couwenhoven, Milwaukee, WI, MS, CSE and Pam Malin, Green Bay WI, disability consultant. 

Sexuality and Prevention of Abuse Seminar Information