Puberty, Relationships, and Sexuality for Teenagers with Down Syndrome
A Q&A with Andrea Lee
Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #7: The Teen Issue). Click here to download the full magazine.
Andrea Lee is a BC Certified Teacher who teaches group educational programs for young adults at the Down Syndrome Resource Foundation. Inspired by her students and seeing a need for the entire Down syndrome community, Andrea has recently graduated from Option’s Sexual Health Educator Certification program, the only one of its kind in Canada. She is currently completing her practicum at DSRF, developing group and one-on-one programs for all ages. She is excited to offer comprehensive sexual health education and guidance for people with Down syndrome, helping them establishing fun, healthy, and safe relationships with themselves, their bodies, and others.
We asked students and parents to submit questions for Andrea, and the response revealed the depth of interest in this topic, with over 50 questions received. Below is a selection of the questions and Andrea’s responses.
Questions from Parents:
What is a good approach for explaining sex and where babies come from? (I have a 14-year-old son with Down syndrome and a 9-year-old daughter without Down syndrome) and it’s is a current topic in our household as my 9 year-old has been asking questions.
I know it can feel like big pressure to have “the sex talk” with your children, but I would approach it as many small talks while looking for teachable moments when they come up. Keep it simple, straightforward, and, if needed, don’t be afraid to say, “That’s a great question. I’m not sure what to tell you at the moment. I will get back to you as soon as I’m ready and I have the right information.” I would recommend finding some good books or videos to help the conversation. You are laying out a foundation and letting them know that you are a trustworthy and safe resource for both of them. If they have more questions eventually, they will know they can ask you.
Being visual learners, folks with Down syndrome will be drawn to the pictures in a book. As parents, it is nice to have a script to follow and answer questions as they come up. Children and teens will take in what they are ready for and ignore the rest. There are lots of great books, including some specifically for people with Down syndrome, such as:
- What Makes a Baby by Cory Silverberg
- Talk Sex Today by Saleema Noon and Meg Hickling
- Sex is a Funny Word by Cory Silverberg and Fiona Smyth
- The Girls’ Guide to Growing Up and The Boys’ Guide to Growing Up by Terri Couwenhoven
- Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals by Terri Couwenhoven
Some may prefer videos to books. Amaze has a variety of videos made about bodies, relationships, and sex. Watch a video together and see if this brings up questions. The videos are a bit quick for some of my students and perfect for others.
How do you know your teen is ready for certain sexual health topics? I don’t want to give them info that they aren’t ready for and cause confusion.
Here’s the good news – you can’t introduce things too early! Discussing topics earlier than you think is often the best time. Do it before they are asking questions, because they can’t ask questions about things they don’t know about yet! Plus, you might not want the questions that come up from them learning about sexual health topics from TV, movies, social media, or their peers. Keep it straightforward, simple, and honest. Ignoring topics can teach them to feel guilty or shameful of certain feelings and thoughts and those are likely the feelings and thoughts we don’t want them to be hiding from us. We want them to get the right information from a person they can trust. That’s you!
However, you are correct – some things will go over their heads or maybe even gross them out. A child or teen, with Down syndrome or without, will pay attention to what they are ready for. It won’t confuse them. You can give them a whole spiel on some topics and they’ll pick out one word that piqued their curiosity, so go with that for now. Books and picture books are great so they can point out what they are interested in. I recommend many books throughout this article.
Now if they’re grossed out? Encourage that! Finding something gross is a healthy, normal reaction to something you and your body is not ready to see or do. People touch what!? It goes where!? Depending on what the topic is, reassure them that it is your body and your choice. Slogans work well with folks with Down syndrome. Try, “My body, my choice!” or “I’m the boss of my body!” You never have to do something you are not ready for, something that sounds gross, something that sounds scary, or anything you don’t want to do with your body or another person’s body. One day, it might sound interesting or appealing, and you will be there to discuss it with them in more detail then.
My son is 14-years-old and still needs assistance in the bathroom and with showering. I have noticed on occasion some self-exploration and erections. I know it’s natural, however I am not sure how to respond/react. Sometimes in other circumstances noticing a behaviour can result in him engaging in it more and am concerned that this could have the same outcome.
You are right; it is natural. It can also be awkward!
Erections are natural and can happen for many reasons. If he asks, you can tell him that when his penis stiffens, it is called an erection and it is something that a normal, healthy penis does. It could be because he is excited, it could be because he is touching it, it could be because he is thinking about something sexual, and it could be for no reason at all. This may be a good reminder for everyone, too – we often make things feel more awkward when they are sexual, but this might not be the case with erections.
Self-exploration could also be for many reasons. It could be sensory, it could be calming, it could be sexual. All of these reasons are valid. However, whatever the reason, it needs to be done in private.
Make sure your son has a time and place to be in private in your home. He needs to be able to identify the private places he has (his bedroom with the door closed, maybe even his bed when the room is empty if he shares a bedroom, the bathroom with the door closed, maybe only a particular bathroom depending on your living situation). Establish a knocking rule in the home before you are entering these private places. Assure him he will have privacy, but if there is a reason someone needs to check on him, they will announce they are coming in first and then he is no longer in private. If he does need help in the shower or with the bathroom, tell him when you will check on him in a set number of minutes and still give him privacy as much as possible. Then explicitly teach that self-touch and self-exploration of his body is healthy and normal, but it is done in private. This way, even if acknowledging the behaviour does lead to him doing it more often, at least he is doing it in the safety of his own bedroom or bathroom when no one else is around.
As for erections, they may happen in public or in private. That is difficult to control. It might be useful to teach ways to hide an erection if you are in public. Wearing a longer shirt that can be pull over the erection, sitting down so the erection is less visible, and placing a bag or books in front of the erection are some easy ones.
My 16-year-old daughter flirts with every male in sight, including complete strangers. How can we teach her to interact with people appropriately and respect personal boundaries?
This one is pretty tricky if you want her to stop her flirtatious impulses. How can you stop a behaviour when you have no control over the reactions of strangers and others she is approaching? If one of them plays along, flirts back, or pretends to be her boyfriend, she will be positively reinforced and want to do it again. If one of them gets angry at her or rejects her, she may be negatively reinforced and possibly still enjoy the interaction with him. She has a desire to be included and connect with some cuties; who can blame her? However, I love that you asked not how to stop this, but how to teach her to do it appropriately.
Greeting skills can be taught and practiced with a speech language pathologist or through social skills instruction. The Program for Education and Enrichment of Relationship Skills (PEERS) was originally developed for people with autism spectrum disorder (ASD) and other socio-emotional problems. The Semel Institute for Neuroscience and Human Behavior has a great website with short role play videos from PEERS. Many of them show a good and bad example of many skills related to dating, like how to flirt with your eyes, how to handle rejection, how to ask someone if they have a boyfriend or girlfriend, and asking someone out on a date. There are also lots of videos of non-dating related social skills, like starting a conversation, entering a group conversation, and different ways to use humour. Teaching these social skills may give her the interactions, attention, and inclusion she likely desires without having to flirt.
The videos give discussion questions at the end of the video. If discussion is not enough, the questions would make a good social story or contingency map. If I asked someone out in a good or expected way, what might the feelings and consequences be for the person I ask out? What about for me? If I ask someone out in a bad or unexpected way, what might the feelings and consequences be for the person I ask out? What about for me? If deciphering the nuances of social conflict is difficult, consulting an educator or therapist trained in the Social Thinking methodology (www.socialthinking.com) may be beneficial.
Depending on how she is flirting, you might want to think about what kind of modeling she is being exposed to – media, social media, school peers, family members, and so on. It might be worth it to get her school and community team on board with this. “I want my daughter to learn how to greet young men in an expected, appropriate way. We have taught her to say _____. Could you help her do this at school/during outings/in the community?” Sometimes things need to be made a priority. With a good team and a lot of consistency, it can improve. Good luck!
Questions from Teens and Young Adults with Down Syndrome:
What’s a good age to date? – T., age 17 and R., age 19
There are many good ages to start dating. Some people start dating in their teens (usually in high school) and some people start dating when they are an adult. Often adults, like your parents, might be worried about you dating too young because they want to make sure you know how to set boundaries for yourself. Are you able to say no to someone who wants to do something you do not want to do? Can you stand up to someone you like? Do you know what it means to treat someone with respect and care and to have someone do the same for you? A good age to date is when you can answer ‘yes’ to all of these questions.
Some other things to think about: Who will pay for my dates? Do I need to be old enough to save my money or have a job? How will I get to my dates? Am I old enough to be safe when out in the community or will I need a supporter to help me out? These won’t stop you from dating, but it should be something you think about.
Take the Dating Readiness quiz in Boyfriends and Girlfriends by Terri Couwenhoven.
Other than bowling, where are good places to go on dates? – C. age 23
When you are planning a date, think of your mutual interests. These are things that you both like so that everyone is having fun. Do you both like hockey? You can go to a hockey game (although this can be expensive!), go to a restaurant to watch the game, play hockey at a park, go ice skating, or go for a walk and talk about hockey. Almost everyone likes food! Some food-related dates can include going to your favourite restaurant, trying a new restaurant, picking a recipe to make together at one of your homes, going to a bakery, or having a picnic. Sometimes your friends, family, and even teachers or other paid helpers might have good date ideas in your community.
Some things to consider:
- How much does it cost?
- How am I going to get there? Will I walk, get a ride from someone, or take the bus?
- Will we need a family member or friend to hang out with us, too? Maybe it would be good to think of something you would all enjoy.
- Should we go out during the day or the night?
Can you only have sex at 2pm? – A., age 17
The time of the day doesn’t really matter for having sex. What matters is that both partners are consenting (they agree to this type of touch) and they are in a private place. You should also know how to have sex safely and respect any rules that your family, religion, culture, or community has about sex.