Raising an individual with a disability presents a different set of obstacles then an abled individual may, but one topic that all parents must address is sexuality. Individuals with disabilities are sexual beings and therefore deserve an education on sexuality. While parents may acknowledge this need, finding resources and strategies to present the information may be more difficult if you are raising an individual who requires a different method of learning.
The Sexuality Resource Center for Parents provides a well rounded variety of information pertaining to sexuality. The website includes a section of information labeled “for all parents” that contains subjects they believe are useful for all children. In addition, they provide sections titles “For parents of children of typical development”, “For parents of children with developmental disabilities”, and “For parents of children with physical disabilities”. In each section, you can find a variety of information such as basics, specifics, activities, and additional resources. They also include tip guides!
The Sexuality Resource Center for Parents works to provide a better, comprehensive information base for parents to use when addressing sexuality to their child. The variety of knowledge is extremely useful when trying to find information to meet your child’s specific needs. In their own words, their mission statement claims “It’s time to acknowledge that children with developmental disabilities will become adults with sexual feelings, and as such, we must provide them with the information and skills they’ll need to become sexually healthy adults.“
Sexual Education is known to be a vital part of education that many people with disabilities do not receive. The National Council on Independent Living (NCIL) developed an excellent series of youtube videos aimed to help close this gap. The sex ed for individuals with I/DD project is a 10 part video series that can be seen on youtube. The project contains videos that discuss a range of important sexual information from healthy relationships and consent to how to use a condom. The videos also contain self advocates. Understanding that individuals with disabilities are sexual beings and informing such individuals on all sexual topics is extremely important. The NCIL’s video series is an amazing resource. Linked below is the introduction video to the series. The videos can also be accessed though the Nation Council on Independent Living youtube channel.
The Association of University Centers on Disabilities has created an incredible resource for self-advocates to gain sexual information and advice through a webinar series. The first episode of Sex Talk for Self-Advocates contains a panel of sexual educators answering questions about relationships and sexuality posed by self-advocates. Important questions such as “How do you know if someone is your boyfriend or girlfriend? What exactly does consent mean? How to be gay?” are discussed. The webinar series can be accessed through the AUCD website, linked below, or by going to AUCD network’s youtube channel. The presentation slides containing information from the video can also be found on the AUCD website. Sex Talk for Self Advocates is a great free resource that contains informed speakers and spreads sexual education to a diverse group of individuals.
Sexuality and Disability is a free blog dedicated to providing a resource for women with disabilities. The blog answers questions pertaining to sex, the body, relationships, and more in a safe and open discussion. The welcome statement of the website encompasses this;
“Our site starts with the premise that people with disabilities are sexual beings – just like anyone else. sexualityanddisability.org is constructed as a bunch of questions a woman with a disability might have – about her body, about the mechanics and dynamics of having sex, about the complexities of being in an intimate relationship or having children, about unvoiced fears or experiences of encountering abuse in some form.”
Sexuality and Disabilityalso includes an award-winning section that appeals to many individuals with disabilities that contains stories from the point of view of an individual with a disability and gives an in depth and realistic view on sexual topics.
Anatomy and Reproduction were the topics for week 2. We started off the session with a game called “Parts and Post-it Notes” to talk about body parts with the participants. To play this game we had a giant piece of paper with the outline of a body on it. We gave the participants post-it notes to write down the body parts that they knew and asked them to place them on the outline of the body.
After this activity, the participants were told that for the rest of the class they would be focusing on body parts related to reproduction (another way to refer to sex organs or private parts). The participants were then directed to the next activity where they practiced saying terminology related to reproduction out loud and recording their responses to how saying the words made them feel.
When the participants finished the terminology activity, we spit them into two groups to start the fruit anatomical model of reproductive organs using fruit. The participants were shown a picture of the parts of the body and were giving tooth picks and flash cards to label the fruit parts and their functions. This activity was great for the participants to learn the vocabulary in a little abstract and safe way! For a more concrete example of reproduction, we used the “Miracle of Life” video to explain the process.
We ended this session by having the participants briefly summarize that they learned during the session.
YouTube has a lost of great sexuality education resources but it can be hard to find among all of the “not safe for work” content. Here’s a few channels and videos that might be useful. One of the most difficult tasks sex educators report is explaining intimate acts. This can be uncomfortable and difficult so I’ve tried to focus on these difficult to teach topics. The videos may not be the best fit for the person/people you’re working with, but they can give you an idea where to start. The channels also have great resources for expanding your own education on sexuality topics.
Healthchannel is a YouTube channel with short videos on a variety of health care issues including sexual health resources including a few I’ve listed below. The videos aren’t prefect. They don’t feature animations with people with disabilities and focus on heterosexual couples, but they give very precise, clear information.
Sexplanations is another YouTube channel. They have mini episodes on human sexuality topics from shared sexual behavior to STDs to anatomy. Again the videos aren’t perfect. They move a little too quickly than I would like, but I’ve selected a few I think could be helpful. They could also be good to expand your own understanding of various topics.
Many women with development disabilities are under anesthesia during pelvic exams or don’t get them at all (or as recommended). However, educating about pelvic exams may be an important part of teaching sexual health. I’ve included the link to a video that may help.
This is a brief video that goes through the basic procedure of a woman having a pelvic exam. This could also be a good video for teaching about female anatomy. It has a lot of technical terminology but it also moves nice and slow.
Hygiene is not on the SEICUS guidelines for what to teach in a human sexuality class, but we find that it can be a hard topic for students. It also is strongly connected to puberty because it is during puberty that hygiene needs change at the same time young people have more autonomy and responsibility for their hygiene. We tackled hygiene with a series of activities we called hygiene Olympics. In small groups, students moved throughout the stations to practice and contemplate hygiene tasks.
Hand washing: Students rubbed glitter mixed with lotion on their hands and then had to wash their hands until the glitter came off. This will helped students to recognize that hand washing is more than just rinsing hands lightly with water.
Body washing: We will had life-size body outlines, loofas, and paint. Students used the paint like it was soap. This helped students recognize the importance of washing their entire body.
Laundry: Students saw a pile of laundry. They then sorted the clean from the dirty clothing (the dirty clothing are just tee shirts that have been dampened and wrinkled). The helped students identify clean clothing.
Shaving: Students used an orange to practice shaving with a razor and shaving cream. The teacher in the group explained that boys often shave their face and that girls often shave their legs and underarms. Students had an opportunity to practice shaving.
Deodorant testing: We had several deodorants with the brands blocked out. Students smelled and voted on their favorite scent. At this station, teachers pointed out the importance of wearing deodorant each day and reapplying after activities that cause sweat. This station emphasized the importance of deodorant use.
My Hygiene Routine: Students saw pictures of different hygiene tasks. They also had a worksheet that said “My Hygiene Routine.” Students chose what order they would prefer to complete the hygiene tasks. This activity provided students with control and choice while also committing them to completing the necessary tasks.
In short, here’s the Four P Plan for Period Support
1. Prepare a period kit
2. Preinstruct (perhaps using social stories)
4. Plan for pain relief
Klett & Turan used a combination of three Social Stories adapted from Mary Warbol’s “Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for Young People with Autism” (this book is not just for girls). They implemented the social stories before menarche (first period) and then planed to revisit them after menses began. These stories focused on growing up, what a period is, and how to take care of a period (I would reprint them but you have to be careful about Social Stories and their copy rights). They also used simulations with the girls using red syrup so they could practice changing a “used” menstrual pad. They reviewed the social stories over several days and completed simulations over several days. They also used different types of menstrual pads in case the girls did not always have access to the same type. They also asked the children questions about menstruation to check for comprehension (such as “What is the blood from your vagina called?” and “Do you need to wear a pad when you don’t have your period?”). This method proved effective in these case studies and the parents who implemented the plans where happy with it.
I have a good friend who made a menstrual kit for his daughter to start keeping in her book bag around age 11. In a zip lock bag he placed a change of underwear, menstrual pads, Tylenol, a change of shorts, and bathroom wipes. That way, if her first period was at school, she had everything she needed and wouldn’t need to ask for support unless she wanted to. I personally think this is a wonderful idea and wish my mom had thought of it when I was middle school! This idea has caught on because you can buy premade kits. Also, they make underwear that help keep menstrual pads in place.
I have heard that some families also preemptively use pain relief to support with discomfort and PMS. Not all girls associate the physical discomfort with their period or are able to communicate “I feel bloated” or “I have cramps.” Although these are phrases that you can teach and prompt, some families just start using an over the counter painkiller two or three days before they anticipate the start of the period. This isn’t foolproof because, especially when girls first start getting their period, they may have irregular cycles.