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Sexuality education for parents of young people with Down Syndrome

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By Kim Cavill

When I first started teaching sexuality education, I focused on people with disabilities, the parents and carers of people with disabilities, and professionals who worked with people with disabilities. I truly loved my work. When I moved back to the United States, I attempted to bring that work with me, pitching various disability support organizations around Chicago to teach sexuality education. The best response I got was…let’s call it polite disinterest.

That is why my heart leapt when I heard about Katie Frank, who works at the Adult Down Syndrome Center in Park Ridge, and she was kind enough to spend an hour with me to talk about her work in sexuality education for parents of young adults with Down Syndrome.

Katie has a PhD in Disability Studies from the University of Illinois at Chicago, where her dissertation was “Parents as the Primary Sexuality Educators for their Adolescents with Down Syndrome.” She has been the primary investigator on multiple research studies including individuals with DS and/or their families, and has had her work published in peer reviewed journals. I spoke to her about sexuality education for parents of young people with Down Syndrome.

I asked Katie where she usually starts with parents and carers of young people with Down Syndrome in regard to sexuality education. She said she likes to start with questions. Parents tentatively bring up the subject of sexuality education for many different reasons. Rather than make assumptions, Katie seeks out more information by asking questions like, “Why are you thinking about this right now?” Parents’ answers range from issues around public vs private behaviors, to discomfort with self-stimulation. Others do not how to respond when their child declares an intention to get married. Despite the wide variety of circumstances that lead families to Katie, research shows that most parents avoid these conversations because they’re scared, and understandably so. Katie reassures parents that sexuality education is not just about sex. In fact, many times, it is not about sex at all. Frequently it’s about dating, relationship skills, needs for companionship, or general life goals. She also tells parents that sexuality education is not just a one-time conversation, but rather a habitual use of teachable moments to both gauge and add to a young person’s understanding.

Katie says that parents, not educators, should be the primary teachers of sexuality education. For many young people with Down Syndrome, schools and supportive service agencies are ill-equipped to teach sexuality education in a way that is tailored to individual understanding and learning needs. If a young person with Down Syndrome is in an inclusive classroom, the material is not necessarily presented in a way that maximizes their understanding. If a young person is in a special education room, the teacher is highly unlikely to be even the least bit comfortable teaching sexuality education. Therefore, Katie believes that parents are best positioned to be the primary teachers of sexuality education for their children.

So, where should parents start? Katie directed me to many helpful resources, which you can find here. Some of those resources include books written by the incomparable Terri Couwenhoven. The Adult Down Syndrome Center also offers in-person services for qualifying families. These services include monthly social skills workshops on topics like friendship, dating, and social awareness. The center also offers health services and consultations.

Katie is currently running a research study at the center for family-based sexuality education training for parents of young adults with Down Syndrome. The training is free for parents of young adults (ages 20-30) with Down Syndrome. The study will investigate the effectiveness of a family-based sexuality curriculum for parents of young adults with Down Syndrome. So far, Katie is pleased with the results of the study, which measures improvement in self-efficacy and attitudes around sexuality and healthy relationships, as well as increases in parent-child communication on sexuality-related topics. Participants must be able to communicate in English and be available to meet three times over a four week time frame for three hours (9 AM – 12 PM). A follow-up survey must be completed one month after the final training. It is offered at the Adult Down Syndrome Center in Park Ridge, IL, and there are several date options available through the summer and early fall (of 2017). Please contact Katie, or call 847-318-2303, if you are interested in participating.

When I worked in sexuality education for people with disabilities, many asked me why my job existed at all, implying that people with disabilities have no need for this information. That is simply untrue. Sexuality education includes information about puberty, social expectations, relationship skills, what is/is not legally permitted, body autonomy, and risk-management. Those topics are relevant to all human beings, regardless of whether they are typically-developing or not. The mechanisms for delivering that information and the level of detail required are the only things that change. I was very grateful to meet Katie, who is doing the important work of making sure families have access to the information and services they require to live healthy, fulfilled lives on their own terms.

Though I wish I could summarize all of Katie’s insight from the fascinating hour we spent together, I can at least leave you with this:

“None of us knows all the answers to all the questions, which is why we all must learn to keep asking.” – Katie Frank

Complete Article HERE!

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The Vulnerable Group Sex Ed Completely Ignores & Why That’s So Dangerous

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By Hallie Levine

When Katie, 36, was identified as having an intellectual disability as a young child after scoring below 70 on an IQ test, her parents were told that she would never learn to read and would spend her days in a sheltered workshop. Today she is a single mum to an 8-year-old son, drives a car, and works at a local restaurant as a waitress. She blasted through society’s expectations of her — including the expectation that she would never have sex.

sex-edKatie never had a formal sexual education: What she learned came straight from her legal guardian, Pam, who explained to her the importance of safe sex and waiting until she was ready. “I waited until I was 19, which is a lot later than some of my friends,” Katie says. Still, like many women with disabilities, she admits to being pressured into sex her first time, something she regrets. “I don’t think I was ready,” she says. “It actually was with someone who wasn’t my boyfriend. He was cute, and he wanted to have sex, so I said I wanted it, but at the last minute I changed my mind and it happened anyway. I just felt really stupid and uncomfortable afterwards.” She never told her boyfriend what happened.

Katie’s experience is certainly not unique: In the general population, one out of six women has survived a rape or attempted rape, according to statistics from RAINN. But for women with intellectual disabilities (ID), it’s even more sobering: About 25% of females with ID referred for birth control had a history of sexual violence, while other research suggests that almost half of people with ID will experience at least 10 sexually abusive incidents in their lifetime, according to The Arc, an advocacy organisation for people with intellectual disabilities.

When it comes to their sex lives, research shows many women with intellectual disability don’t associate sex with pleasure, and tend to play a passive role, more directed to “pleasuring the penis of their sex partner” than their own enjoyment, according to a 2015 study published in the Journal of Sex Research. They’re more likely to experience feelings of depression and guilt after sex. They’re at a greater risk for early sexual activity and early pregnancy. They’re also more likely to get an STD: 26% of cognitively impaired female high schoolers report having one, compared to 10% of their typical peers, according to a study published in the Journal of Adolescent Health.

Katie, for example, contracted herpes in her early 20s, from having sex with another man (she says none of her partners have had an intellectual disability). “I was hurt and itching down there, so I went to the doctor, who told me I had this bad disease,” she recalls. She was so upset she confronted her partner: “I went to his office crying, but he denied everything,” she remembers.

Given all of this, you’d think public schools — which are in charge of educating kids with intellectual disability — would be making sure it’s part of every child’s curriculum. But paradoxically, kids with ID are often excluded from sexual education classes, including STD and pregnancy prevention. “People with intellectual disabilities don’t get sexual education,” says Julie Ann Petty, a safety and sexual violence educator at the University of Arkansas. Petty, who has cerebral palsy herself, has worked extensively with adults who have intellectual disabilities (while not all people living with cerebral palsy have intellectual disabilities, they face many of the same barriers to sexual education). “This [lack of education] is due to the central norms we still have when thinking about people with ID: They need to be protected; they are not sexual beings; they don’t need any sex-related information. Disability rights advocates have worked hard over the last 20-some years to get rid of those stereotypes, but they are still out there.

“I work with adults with disabilities all the time, and the attitudes of the caretakers and staff around them are, ‘Oh, our people do not do that stuff. Our people do not think about sex,’” Petty says. “It’s tragic, and really sets this vulnerable population up for abuse: if they don’t have knowledge about their private body parts, for example, how are they going to know if someone is doing something inappropriate?”

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Historically, individuals with intellectual disabilities were marginalised, shunted off to institutions, and forcibly sterilised. That all began to change in the 1950s and 1960s, with the push by parents and civil rights advocates to keep kids with ID at home and mainstream them into regular education environments. But while significant progress has been made over the last half century in terms of increased educational and employment opportunities, when it comes to sex ed, disability rights advocates say we’re still far, far behind.

“What I find is shocking is I’ll go in to teach a workshop on human sexuality to a group of teenagers or young adults with cognitive disabilities, and I find that their knowledge is no different than what [young people with ID would have known] back in the 1970s,” says Katherine McLaughlin, who has worked as a sexuality educator and trainer for Planned Parenthood of Northern New England for over 20 years and is the co-author of the curriculum guide “Sexuality Education for Adults with Developmental Disabilities.” “They tell me they were taken out of their mainstream health classes in junior high and high school during the sexual education part, because their teachers don’t think they need it. I’ve worked with adults in their 50s who have no idea how babies are made. It’s mind blowing.”

“There’s this belief that they don’t need it, or that they won’t understand it, or it will actually make them more likely to be sexually active or act inappropriately,” adds Pam Malin, VAWA Project Coordinator, Disability Rights Wisconsin. “But research shows that actually the opposite is true.”

Indeed, as the mother of a young girl with Down syndrome, I’m personally struck by how asexualised people with intellectual disabilities still are. Case in point: When fashion model Madeline Stuart — who has Down syndrome — posted pictures of herself online in a bikini, the Internet exploded with commentary, some positive, some negative. “I think it is time people realised that people with Down syndrome can be sexy and beautiful and should be celebrated,” Madeline’s mother, Roseanne, told ABC News. Yet somehow, it’s still scandalous.

Ironically, sometimes the biggest barrier comes from parents of people with ID — which hits close to home for me. “A lot of parents still treat their kids’ sexuality as taboo,” says Malin. She recalls one situation where a mom in one of her parent support groups got attacked by other parents: “She was very open about masturbation with her adolescent son, and actually left a pail on his doorknob so he could masturbate in a sock and then put it in the pail — she’d wash it with no questions asked. I applauded it: I thought it was an excellent way to give her son some freedom and choice around his sexuality. But it made the other parents incredibly uncomfortable.”

Sometimes, parents are simply not comfortable talking about sexuality, because they don’t know how to start the conversation, adds Malin. Several studies have also found that both staff and family generally encourage friendship, not sexual relationships. “It’s a lot of denial: The parents don’t want to admit that their children are maturing emotionally and developing adult feelings,” says Malin. An Australian study published in the journal Sexuality & Disability found that couples with intellectual disability were simply never left alone, and thus never allowed to engage in sexual behaviour.

I’m doing my best — but despite all my good intentions, it’s certainly not been easy. This fall, I sat down to tell my three small children about the birds and the bees. My two boys — in second grade and kindergarten — got into the conversation right away, and as we began talking I realised it wasn’t a surprise to them; at a young age, they’d already picked up some of the basic facts from playmates. But my daughter, my eldest, was a whole different story. Jo Jo is in third grade and has Down syndrome, so she’s delayed, both with language and cognition. And because of her ID, and all the risk that goes along with it, she was the kid I was most worried about. So it was disheartening to see her complete lack of interest in the conversation, wandering off to her iPad or turning on the radio. Every time I would try to coax her back to our little group, she would shout, “No!”

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Lisa Shevin, whose 30-year-old daughter, Chani, has Down syndrome, says she’s never had a heart-to-heart with her daughter about sexuality. “The problem is, Chani’s not very verbal, so I’m never quite sure what she grasps,” says Shevin, who lives in Oak Park, a suburb of Detroit. While Chani has a “beau” at work, another young man who also has an intellectual disability, “They’re never, ever left alone, so they never have an opportunity to follow through on anything,” says Shevin. “I feel so frustrated as her mother, because I want to talk to her about sex ed, but I just don’t know how. I’ve never gotten any guidance from anyone. But just because my daughter is cognitively impaired, it doesn’t mean she doesn’t have the same hormones as any other woman her age. You can’t just sweep it under the rug and assume she doesn’t understand.”

In one interesting twist, sex educators say they tend to see more women with intellectual disability than men being sexually aggressive. “I worked with a young woman in her late 20s who would develop crushes on attractive male staff members at her group home,” recalls Malin. “She would try to flirt, and the guys would play it off as ‘hah hah funny,’ but eventually she called police and accused one of them of rape.” While the police investigated and eventually dropped charges, Malin was brought in to work with her: “We had a long conversation about where this had come from, and she kept talking about Beau and Hope from ‘Days of Our Lives’,” Malin recalls. “It turned out she had gotten so assertive with one of the male staff that he’d very adamantly said no to her, but her understanding of rape boiled down to gleaning bits from soap operas, and she thought that if a man in any situation acted forcefully with a woman then it was sexual assault.”

While most cases don’t escalate to this point, sometimes people with intellectual disability can exhibit behavior that causes problems: Chani, for example, was kicked out of sleep-away camp a few years ago after staff complained that she was hugging too many of her male counsellors. “She’d develop little crushes on them, and she never tried anything further than putting her arms around them and wanting to hang out with them all the time, but it made staff uncomfortable,” Shevin recalls. Chani’s since found a new camp where counsellors take her behaviour in stride: “They’ve found a way to work with it, so if she doesn’t want to do an activity, they’ll convince her by telling her afterwards she can spend time with Noah, one of the male counsellors she has a crush on,” says Shevin. (At the end of the summer, Noah gave Chani a tiara, which remains one of her prize possessions.)

So what can be done? Sadly, even if someone with ID is able to get into a sexual education program, the existing options tend to severely miss the mark: A 2015 study published in the Journal for Sex Research analysed 20 articles on sexual education programs aimed at this group and found most fell far short, mainly because people who unable to generalise what they learned in the program to an outside setting. “This is a major problem for individuals who are cognitively challenged: They have difficulty applying a skill or knowledge they get in one setting to somewhere else,” explains McLaughlin. “But just like everywhere else, most get it eventually — it just takes a lot of time, repetition, and patience.”

In the meantime, for parents like me, McLaughlin has a few tips. “Take advantage of teachable moments,” she says. “If a family member is pregnant, talk about it with them. If you’re watching a TV show together and there’s sexual content, don’t just sweep it under the rug — try to break down the issues with them.” It’s also important to be as concrete as possible: “Since people with ID have trouble generalising, use anatomically correct dolls or photographs whenever possible, especially when describing body parts,” she says.

Some local disability organisations also offer workshops for both teenagers and adults with intellectual disabilities. And the Special Olympics offers protective behaviours training for volunteers. But at this point there’s a dearth of legislation and organisations that are fighting for better sexual education, which means parents like myself have to take the initiative when it comes to educating our kids about their burgeoning sexuality.

It’s a responsibility I’m taking to heart in my own life. Now, every night when I bathe my daughter, we make a game of identifying body parts, some of which are private, and I explain to her that no one touches those areas except for mommy or a doctor. Recently, she’s started humping objects at home like the arm of the sofa, and I’ve begun explaining to her that if she wants to do something like that, it needs to be in the privacy of her own room. It’s taken a lot of repeating and reinforcing, but she seems to be getting the message. I have no doubt that — like every other skill she’s mastered, such as reading or writing her name or potty training — it will take time, but she’ll get there.

As for Katie, with age and experience, she’s become more comfortable with her sexuality. “It took me a while, but I’m confident in myself,” she says. “I am one hundred percent okay saying no to someone — if I’m pressured, there’s no way in the world now I’ll do anything with anybody. But that means when it does happen, it feels right.”

Complete Article HERE!

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A Budding Kinkster’s Dilemma, Part 2

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So I heard back from Todd. I shared his first message to me last Monday. You can find that exchange HERE!

Name: Todd
Gender: Male
Age: 21
Location: Oregon
I took your advice and found a local club of like-minded people. I went to one of their mixers. I met so many amazing people. Among them was this woman who is about 16 years older than me. She’s a mistress and a Dom for women only. She was kind enough to take me under her wing. She’s married to this guy who also attends these mixers, but is not really part of the scene. This woman has been so amazing teaching me and letting me sit in on her sessions. Her submissives have also been amazing and so patient with me as I find my footing.

So this leads me to my problem. I’ve only dominated with her 3 times. Each time it gets easier and more comfortable and I love it. And strange as it sounds, now this mistress has invited me to dominate her. And I understand that this is a huge honor for a seasoned Dom to invite a novice to dominate her. The one thing that tears me is her husband. She also has a child. So I need to know what the etiquette is what the boundaries are on this. I can’t hardly go up to the husband and say, “hey, is it ok for me to spank your wife.” I guess I feel a little taboo about that.

My friend, you are bringing your traditional middle-class vanilla value system to this new alternative and very un-vanilla situation that you now find yourself in. This conventional value system and its accompanying boundaries may serve you well in your “regular” life, but here in this new life, they are outmoded and cumbersome.

gentleThat is not to say that in the kink world anything goes. On the contrary, it’s just that the value system here is way different and thus so will the etiquette be. Here’s a rule of thumb that you can live by. When someone, particularly someone of exceptional stature in alt culture, like this dominant woman, invites you to participate with her in a scene; she is letting you know that these are the boundaries. You’ll rarely go wrong if you allow your more seasoned partner to lead you, even if you are going to be the Dom in an upcoming scene.

Regarding her husband, he’s not the one who authorizes or prohibits the encounter. It is the woman who is in charge. I mean it’s conceivable that he could be a cuckold for his wife. Much stranger things have happened, don’t cha know. And if you don’t know about the cuckold fetish that so many men groove on, then you have even more remedial study ahead of you.

I do appreciate that you continue to check in with me about your adventure. I am so proud of you for being humble enough to submit to a woman’s tutelage. That marks you as an exceptional fellow indeed. Keep it up and keep me posted.

Finally I want to encourage you to check out my podcast series called Sex EDGE-U-cation.  This is the series where we take a look at the fascinating world of fetish sex and kink. In fact, you might invite your new Dom woman friend to listen in with you. I chat with amazing guests from around the world, and each of them offers a unique perspective on live on the edge.  Of particular interest will be my conversations with these marvelous professional Doms:  Mistress Katherine, Mistress Matisse, Lady Lydia, Lady HotchKiss, Claire Adams, Eve Minax, and Cleo Dubois.

Good luck

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Sugar Daddy/Sugar Baby

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Name: Rachel
Gender: Female
Age:
Location:
I just met someone online and I’d like to maybe try my hand at being a dominatrix, but not really sure where to begin. He emailed me some questions he wished me to answer, I was wondering if you could maybe help with a couple of ideas/suggestions on how to answer them just to get me started. I’m having a hard time finding people to contact about this. Oh and by the way am a sugar baby, it would be a sd/sb relationship (sugar daddy/sugar baby) which I thought might be the perfect way to start a BDSM relationship because I would like to adopt an alternate personality anyways. I’m really hoping not to be judged by anyone for any of this. I’m really having trouble getting started; maybe I need to just get into character? Think you can help me?

I kinda think being a dominatrix is a whole lot more than role-playing or getting into character, darlin’, unless, of course, you are simply a dilettante. And if that’s all you’re really interested in, it really doesn’t make a difference how you play this out. You can be as silly as you want.Sugar-Daddy

Think of this as being something similar to mastering a new language. Curiously enough, there are a lot of similarities between these two efforts. Just like leaning a few words and phrases in a foreign tongue doesn’t make you proficient in that language. So too donning a leather bustier and smacking a ridding crop against your leg doesn’t make you a dominatrix. Get it? Got it? Good!

dominatrix01However, if you really want to get into the life, there’s a considerable amount of remedial work ahead of you. Before you can claim the title “dominatrix” you will have to make an intensive study of what this entails. This is best done under the tutelage of another reputable Dom. Of course, not every pro-Dom is gonna want to take on an novice and show her the ropes, as it were. It’s no wonder you’re having problems connecting with others who might help you. But if you’re lucky, you might find a kind soul out there who will give you a break. And just so you know, these lessons will not come cheaply.

I also encourage you to approach others in the life with a good deal more deference and thoughtfulness then how you approached me. If they get a sense that you are simply an airhead twit, you’ll be out before you are even in.

Finally, I suggest that you listen to any one or all of the interviews I’ve done with real professional Dominatrices. I think you will find them both enlightening and informative. Here’s Mistress Katherine, Mistress Matisse,
Eve Minax, Lady Lydia, Lady Hotchkiss, Claire Adams, and Cleo Dubois.

Good luck

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