Puberty and Sexuality Issues, Part 2

Down Syndrome Center at UPMC Children’s Hospital of Pittsburgh

World renowned expert on sexuality and puberty issues in people with Down syndrome, Terri Couwenhoven, joins us again for the second part of our discussion: Sexuality and Boundaries  Issues in Ds. 

Released: 12/29/15


Dr. Vellody: Hello everyone and welcome back to the Down Syndrome Center of Western Pennsylvania Podcast. I am your host, Dr. Kishore Vellody. In our last podcast, we began a discussion with Terri Couwenhoven who is the clinic coordinator for the Down Syndrome Clinic in Milwaukee, Wisconsin. Terri is a certified sex educator who specializes in working with individuals with developmental disabilities and their families. Terri has a business called TC Services and the website where you can find her contact information is Her books are known around the world and can be found at by searching for Terri Couwenhoven on the site. Now, Terri, after giving us all that great information on the last podcast, I am going to start this podcast with a very difficult issue that is unfortunately too common in children with Down syndrome. Many of the kids and adults tend to be very trusting, and that trust can be taken advantage of and lead to abuse. Can you please give our families some ideas on when to start discussing safety and boundaries and help decrease the chances for abuse happening.

Ms. Couwenhoven: Related to safety and boundaries and helping them understand those concepts, that can start really young. That can start way before puberty. We should be thinking about those kinds of issues lifelong. A couple things related to that. I have seen that information is power. I have had way too many experiences where adult self advocates have been abused because they don’t know they have the right to say no. That is pathetic to me. So information becomes really powerful. Some key information that I work a lot with adults or teens related to this is helping them understand who the people are in their life, the relationships they have with people, and what roles they play. There’s a lot of confusion around that. Everybody’s their friend, even if they’re paid helpers. Even if these paid helpers don’t hang out with them at any other time except their paid time. That’s a lie. Those aren’t friends; those are paid helpers. Understanding who the people are in their life . . . that door changes changes, especially in adulthood. The paid helpers who are coming in and out of their lives are sort of a revolving door. Make sure they know who these people are and what their roles are.

Also, the other piece of information, is the reasons why . . . there’s only a few reasons why anybody should be looking at or touching private body parts. 1) Health, by the doctor . . . you can be doing some teaching every single time you see a patient, you can do teaching around that. 2) Hygiene, only if they need help. If they’re independent with hygiene, nobody should be in there with them. 3) And then later, if they’re in an adult boyfriend/girlfriend relationship. Those are the only 3 times that anybody should ever be looking at or touching their private body parts. If there’s not those reasons . . . It’s not who’s doing the touching, it’s why. That becomes really important.

I think another real important thing that we see in people with Down syndrome is compliance. They like to please. I think it’s really important to be giving our kids their voice and teaching assertiveness. It’s not easy. It can start as early as middle school. Giving them choices and allowing them to have those choices. Sometimes we give people choices . . . we say, “Do you want to go to Grandma’s?” And they say, “No.” “Well, we’re going to Grandma’s.” We sort of take that power away from them. So, they’re very used to that. Giving them power, giving them a voice.

We have to, as parents, try to be really open about sexuality and make it become approachable. I talk to parents a lot about being “ask-able.” If something happens to our kids, and they can’t talk to us about little things like “I have a crush on so-and-so” or “I really like this girl at school,” they’re not going to tell us about abuse. They’re not going to tell us about those really, really big things. Being approachable, being “ask-able,” not avoiding this whole area of sexuality as a big “taboo” subject, I think is going to be helpful as well.

At this point in time, we don’t have a magic formula for how people can not be abused. We know what puts people at risk, and most people with intellectual disabilities are at risk for a lot of the reasons we talked about today. These three things are really important: information, giving our kids a voice, and our own attitudes about sexuality. Being open and “ask-able” so if something does happen, they’ll come to us.

Dr. Vellody: That’s really a tough subject so thanks for sharing your thoughts. It definitely seems like communication is the key. Now, we’ve been focusing on puberty and sexuality issues, but do sexuality issues go away as people with Down syndrome become young adults? Is it still important to think about after the initial puberty phase is over?

Ms. Couwenhoven: Absolutely. Absolutely. And, no, it doesn’t go away. When I do my dating workshops, the biggest issue is that they want to find someone. They want to find somebody to date. And they expect that I’m going to find them someone – they think that’s part of the dating workshop! “Oh, Terri is going to find me a partner.” So, it’s sort of bad news! That’s a really common desire and goal that a lot of people have. Whether or not they can carry on a dating relationship, and they understand the work involved in that . . . no, but that’s just an information sharing piece. I think with some training and education, they can get it. And when people do get it, yeah, there’s people getting married. There’s way more people getting married than there used to be. I really don’t know if we understand full capacity and potential at this point. With this younger generation of people who are growing up fully included in life . . . they want the same things everybody else wants. So we need to prepare them for that.

Dr. Vellody: Thanks for that perspective. Terri, thank you for joining me for these 2 podcasts to discuss this vitally important topic. If people have more questions, where can they get more information?

Ms. Couwenhoven: Well, they can e-mail me. The books I wrote, I wrote them from the heart and for a purpose. The parent book – Teaching Children with Down Syndrome About Their Bodies, Boundaries, and Sexuality – that’s really a how to teach guide for parents or professionals who are working with anybody who has a developmental disability, not just Down syndrome. I lost the battle on the title! I wrote the 2 puberty books – the male and the female puberty books – to help for people with intellectual disabilities, to help them understand what to expect. 3rd grade reading level, lots of pictures. My newest book – the boyfriend/girlfriend book – also evolved out of a huge need. The desire to have a date or have a boyfriend or girlfriend. It’s a “how to do you start a romantic relationship.” There’s a lot of work involved, but I want people to know that. Those are some resources I want people to know I wrote for them.

Dr. Vellody: Thanks, Terri. Your books have been so instrumental in furthering our knowledge in this area. To our podcasters, please visit Terri’s website where you can find more information on Terri as well as the books that she has written in this area. Well, Terri, thanks again for joining us!

Ms. Couwenhoven: My pleasure!

Dr. Vellody: And thank you to our podcasters for listening. I hope you found these podcasts as educational as I did. Please send us your requests for other information that you would like addressed in future podcasts to Until next time, bye bye!

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