The National Fragile X Foundation’s Adolescent and Adult Project 76

6. Issues In Sexuality

Sexuality and Fragile X Syndrome An Overview for Parents, Families, and Professionals Amanda Bergner, MS, CGC Marcia L. Braden, PhD Deborah Kwan, OTR/L Ellen Walters, MFT

Sexuality is a natural part of life. It includes emotional development and social behavior, body image and awareness, self-esteem, friendships, gender identity, as well as involvement in physical expressions of love, affection, and desires.

Like their typical peers, individuals with developmental delays or disabilities have sexual feelings, needs, and identities. Unfortunately, myths about people with disabilities and sex abound. One such myth is that people with disabilities are either not interested in sex or are not capable. At the other end of the spectrum, people with disabilities are sometimes viewed as being overly interested in sex and unable to control their sexual behavior.

In reality, individuals with fragile X syndrome (FXS) develop the same physical and sexual characteristics as those without FXS (hair growth, breast development, menstruation, and other physical changes). Males with FXS are capable of fathering children; females are capable of conceiving and bearing children.

Young adults with FXS must have access to socialization, sexual education, sexual health care, and opportunities for developmentally appropriate socializing and sexual expression to help them understand and enjoy their sexuality. The ability to maintain friendships, share interests, and be included are deep human needs. Individuals with FXS have the same basic need to be liked and accepted as their peers.

Sex education for adolescents affected by FXS needs to be somewhat different than it is for their typically developing peers. Generally, the education will need to be broader in scope and continue over an extended period of time. The individual must have numerous opportunities for developing and understanding the appropriate time and place for certain behaviors, such as the display of affection. Just as self-help, academic and vocational skills must be taught, so too must social- sexual skills.

Sex education and socialization skill development should begin when children are young. It should make clear the difference between “good” and “bad” touch and behaviors that may be acceptable 77 The National Fragile X Foundation’s Adolescent and Adult Project

Issues In Sexuality

in private but not in public. Moreover, individuals with FXS have a need for sex education that continues through and well beyond puberty. It is also important for parents to explain the concept of values and beliefs in general, and the ones held in particular by their family.

Psychosocial issues also require attention. At any age, relationship failure can occur because of a perceived lack of interest, self-centeredness, social immaturity, shyness, anxiety, agitation, and eye-gaze aversion. These are all characteristics that can be exhibited by individuals with FXS, and which can affect the process of developing meaningful relationships. Early, consistent, and repetitive attention to socialization skills and sex education can reduce the incidence of relationship failure.

Protection from unwanted pregnancy and sexually transmitted diseases is also a critical component of sexuality education for adolescents and adults with disabilities.

These individuals are disproportionately vulnerable to sexual abuse and manipulation. Consistent with a family's cultural and religious beliefs, prevention information and supplies should be readily accessible.

There are a number of programs available to educate individuals with developmental disabilities about safe sexual involvement. Parents are encouraged to contact the resources listed herein and to consult with trusted medical, mental health and spiritual advisors. As much as is practical, parents should be involved and continue to counsel their children throughout the various stages of psycho/social/sexual development.

Sexuality and sexual development can be difficult issues for individuals with FXS and their families. Appropriate sexual behavior and compliance with cultural and social norms and laws are achievable goals for all individuals with FXS. By addressing these challenging issues, we can help individuals with FXS to become productive, accepted and fully included members of our communities. At the same time, it is necessary to encourage society to validate the overall development of individuals with FXS, including their sexuality, as a fundamental right, and as part of the process of becoming a complete and mature human being.

Finally, moral and religious beliefs dictate much about how information relating to sexuality is passed from parent to child. The information here is designed to address issues raised by the unique characteristics many with FXS share, and to direct the reader to additional resources. To establish a solid foundation of socially appropriate behavior, it is recommended that sex education for individuals with FXS begin at an early age.

Also, please note that The National Fragile X Foundation has created a pamphlet that covers much of this material. It is available free of charge—call 1-800-688-8765, or email [email protected] for more information. The National Fragile X Foundation’s Adolescent and Adult Project 78

SUGGESTED SEX EDUCATION CURRICULUM Following is an overview of the topics that should be included in a sex education curriculum.

• Health-related information • Anatomy • Gender identification • Routine male and female examinations • Anticipated changes in the body such as hair growth, breast development, and menstruation • Disease prevention • Sexually transmitted diseases • Safe sex • Appropriate social/sexual interaction • “Public” versus “private” behavior • Exposing private parts • Touching self and others • Masturbation • Mechanics of sexual intercourse and sexual stimulation • Reproduction and parenting • Birth control • Procreation and pregnancy • Inheritance of fragile X syndrome • Care of a child (possibly with special needs)

Clear information on all these topics may help prevent legal situations and abuse. 79 The National Fragile X Foundation’s Adolescent and Adult Project

Issues In Sexuality

For Women: A Strategy for Dealing With Sexual Advances (Note: There is a vignette on the Developed by the Project Work Group DVD based on this material.£)

This information describes one way to help a woman deal with sexual advances from men. Olivia and her helper are talking about Olivia’s date the night before.

Olivia: I didn’t have a good time with Tim last night.

Helper: Do you want to tell me what happened?

Olivia explains that after their movie date, Tim asked if she wanted to go to his friend David’s house. She was reluctant because she doesn’t know David. Still, instead of saying no, she said she didn’t care. At David’s they all watched TV and Tim held her hand. Tim asked if he could kiss her, and Olivia got nervous.

Olivia: He kissed me and I started giggling. Then he put his hand in my pants. I was so scared—I didn’t know what to do.

Olivia said that David’s mom entered the room and Tim moved away before she saw what was happening. He then took Olivia home.

Helper: You know what? Sometimes I have the same problem. When I get nervous, I start to laugh and the guy I’m with thinks I like what he’s doing. I’ve had a guy get really mad because I stopped him from touching me.

Olivia: What did you do? Did you stop dating?

Helper: No. I learned to make myself relax. Now, when I get nervous, I start deep breathing and it helps me to calm down and I don’t laugh. Then I can tell him what I want and don’t want.

Olivia: I want to try that. How can I learn about deep breathing?

Helper: I learned it from a book, and I also got a CD that explains how to do it. You can buy it at a bookstore, or you can borrow mine.

Helper: I’m glad we talked.

Olivia: Me, too. The National Fragile X Foundation’s Adolescent and Adult Project 80

Public vs. Private Behavior: Masturbation (Note: There is a vignette on the Developed by the Project Work Group DVD based on this material.£)

Adolescents with fragile X syndrome experience sexual arousal just as all adolescents do.

Mother: I’ve seen Will put his hands in his pants a lot more recently.

Father: I’ve noticed that too.

Mother: We had to leave the mall yesterday because it got so bad.

Father: It could be a problem if he starts doing that at school or around the neighborhood.

Mother: At the last Fragile X conference, I went to a session where a speaker talked about sexuality, and she said that boys are going to do this.

Father: And? What should we do?

Mother: The first thing she said was: Don’t overreact.

Father: It’s hard not to when we’re in public.

Mother: I know. This is part of normal development, part of life… it isn’t something he’s going to grow out of.

Father: And it isn’t something that can be stopped with a behavior program or medication.

Mother: I think we should talk to Will and let him know that it’s okay to do, but only in private.

Father: I’ll talk to him.

Later that day…

Father: I told Will that he has grown to an age where some parts of your body get sensitive and feel good to touch. He was a little embarrassed, but I told him it’s a normal part of growing up and everyone has the same feelings. But I stressed that it isn’t okay to touch yourself in public; it has to be in private.

Mother: What did he say?

Father: He asked if it was okay to do in his room and I told him either there or in the bathroom were both okay. I didn’t make a big deal out of it, and I hugged him and let him know we’re with him on this, and we’ll help him.

A week later… 81 The National Fragile X Foundation’s Adolescent and Adult Project

Issues In Sexuality

Mother: I’ve only had to remind him a couple of times. I think your little talk helped.

Father: He is doing much better.

It may not be this easy with all adolescents, but it is important to address it as often as needed so it does not become a serious problem. The National Fragile X Foundation’s Adolescent and Adult Project 82

ARTICLES ON SEXUALITY EDUCATION The following pages are reprinted from a two-part series titled “Sexuality Education: Building a Foundation for Healthy Attitudes,” which appeared in Volume 4, Issues 5 and 6, of Disability Solutions magazine. They were written by Terri Couwenhoven, MEd, and are reprinted with permission. Disability Solutions is published by:

Creating Solutions 14535 Westlake Dr., Ste. A-2 Lake Oswego, OR 97035 www.disabilitysolutions.org. Creating Solutions is a 501(c)3 public charity.

The articles were written for children/young adults who have developmental disabilities; they are not specific to fragile X syndrome. While some of the information is geared towards young children, you may find that it is still applicable to your situation with your adolescent or young adult, now and in the future. Volume 4, Issue 5 March/April 2001

Focus: Sexuality Education Part One of a Two-Part Series

Sexuality Education: Building a Foundation for Healthy Attitudes

by Terri Couwenhoven, MS e all have those moments. Those looking at some of my books? No they were moments when something happens well hidden. and we try to figure out why we re- I’m not sure how much time went by be- W fore I asked in a pleasantly inquisitive voice, acted a certain way. By the time they are over, we are forced to understand something about “Where did you hear that word?” ourselves we didn’t realize before. I had one of She shrugged. those moments a few months ago. My 11-year- “Okay,” I thought, “I’m a sexuality educator, old daughter with Down syndrome asked me, I can tackle this one. I have resources. I “What is sex for?” For any other parent this have information.” might not have been a memorable moment. For “Mooomm, what are the socks for?” she me, a sexuality educator, it was the moment. asked. In those silent seconds following her question, This time she said something different. At my mind was moving like a ping-pong ball in a that moment I noticed the socks I had thrown tournament match. Who had been talking to on my shoulder while folding wash. I was her about sex? Did her sister use some termi- relieved. Like a deadline for a project that nology she wasn’t familiar with? Was there a was nowhere near completion, my time had movie that I missed censoring? Had she been been extended. But I did learn something Continued on page 3 Sexuality Education: Book Review:

Building a Foundation for Healthy Attitudes ○○○1 Sexuality: Your Sons and Daughters with

Intellectual Disabilities ○○○○○○○○○○○○○○14 ○○○○○○○○○○○○

Letter from the Editor ○○○○ 2 ○○○○○○○○○○○○

Correction ○○○○○○○○○○ 15 ○○○○○○○○○○○○ in this Shareissue Your thoughts ○○○○ 16 Disability Solutions March/April 2001

www.disabilitysolutions.org [email protected] phone: 503-244-7662 ’ve yet to meet a parent who doesn’t cringe if the I fax: 503-246-3869 topic of sex education comes up. Somehow our chil- ISSN: 1087-0520 dren, with or without disabilities, are forever our children. Disability Solutions is published six times Teaching them about relationships, bodies, and sex is yearly by The Enoch-Gelbard Foundation, a tough for most. In this issue of Disability Solutions, Terri nonprofit, independent, private foundation. If you would like to continue to receive this Couwenhoven shares the first of a two-part series on sexuality free publication or stop receiving it, please education. This first article offers tips for building a foundation write to the publication address. of learning healthy attitudes about privacy and other concepts Readers are welcome to submit articles, re- that are later woven into our children’s ideas about relation- views, letters to the editor, photographs, or ships and sex. commentary to the publication address I found this first installment particularly interesting. I’ve (above). Please include your name, address, e-mail, and phone number with your sub- long felt that there was little for me to do at this point for my mission. It is helpful if submissions are sent son. I was wrong! I was glad to find some of the things we on disk or by e-mail in Word 97 or another were already doing were important points in teaching a child PC compatible format. If you cannot, please their body is their own—even when they need some assis- send submissions typed double-spaced. All submissions will be reviewed and edited for tance. I also find Terri easy to talk to regarding sexuality content and style. education. Not only is she professional, but she is also a No contribution or subscription fee is required mother of a girl with Down syndrome. She understands from to receive Disability Solutions. If you would like a professional point-of-view and because she lives with similar to help with the cost, you may send a tax de- challenges. It is comforting not to have to explain some of ductible contribution to The Enoch-Gelbard the nuances of Down syndrome when coping with a tough, Foundation at the publication address. private topic such as masturbation or birth control. Copyright © 2001, Disability Solutions. In part two of this series, Terri shares information for build- ing on the foundation of sexuality education. It will be a great Reprint Policy source of information for those of you with teenagers and A goal of The Enoch-Gelbard Foundation and adults in your life. Disability Solutions is to make information widely available, free-of-charge to families and professionals. The Foundation supports We also want to thank all the children and young adults sharing information in the public domain, es- who are featured in this article. pecially for families. You can download back issues of Disability Solutions free from our Pages 3, 9, 11, and 13 website (see above), or request a printed copy at a cost of $2.50 while supplies last. If you Anna Couwenhoven, Port Washington, Wisconsin would like to reprint material from Disability Page 3 Solutions at no cost to others, you do not Alex Krupski, Grafton, Wisconsin need to request permission. When you do reprint material, please include the author’s Page 9 name and list Disability Solutions as the Lucas Rilling, Saukville, Wisconsin source. When possible, it would be nice to Page 11 see a copy of the article reprinted or the URL of the web page where it is located. If Front Row: Malorie Ott, Nicole Bliesner, Lindsay Wanta you would like to reprint material from Back Row: Anna Couwenhoven, Katelyn Rekoske, Caitlyn Disability Solutions in a book, newsletter, DeKarske electronic or any other format for which you may receive any payment, permission All from Port Washington, Wisconsin is required. Please send requests for per- Page 13 mission to the publication address. Lindy, Terri, and Anna Couwenhoven Opinions and information published in Disability Solutions are not necessarilyfrom the editor those of The Enoch-Gelbard Foundation. 2 Volume 4, Issue 5 Disability Solutions

Sexuality Education: Building a Foundation for Healthy Attitudes

Continued from page 1 about myself that day. This sexuality stuff, sex. It includes how we feel about our body is not easy. And talking to other people with and ourselves. Sexuality is a process of learn- developmental disabilities, other families, or ing that evolves throughout our lives, an ac- other professionals who support people with tive, inseparable part of who we are. disabilities is different than talking to my Sexual Learning: child. Up until that point, I had felt pretty good about the progress Anna had made on How it Happens & Why it Needs to Happen her journey to becoming a sexually healthy Parents are the primary sexuality educators person. But I had to keep moving. There was of their children, which is how it should be. so much more she needed to know. From birth, we model and teach our chil- Moments like these remind me why I en- dren messages about love, affection, touch, joy teaching parents, professionals, and self- and relationships. How we cuddle and hold advocates about sexuality. This is the first our children teaches them how we feel about of a two-part series about sexuality educa- them. Some believe loving touch early in life tion for parents of children with developmen- sets the stage for healthy adult intimacy. tal disabilities. It will outline the importance Who we are as a sexual adult is largely a of early sexuality education and explain the result of how we received information as chil- first layer of topics to introduce to your child. dren. For most of us, learning about sexual- Part two will expand on this foundation to ity occurred in a variety of ways. Our par- issues for parents of teenagers and adults ents were likely our primary sexuality edu- with Down syndrome. cators, as they are the initial and most fre- When I attempt quent teachers and models. Later our peers, to define sexual- the media, religion, and life experiences in- ity with parents fluenced our sexual learning. or professionals For people with disabilities such as Down in programs, it syndrome, opportunities for learning about isn’t an easy sexuality are more limited. The reading level task. What of materials is out of reach, which limits ac- makes it difficult cess to quality printed materials and resources. is that sexuality Even though we, as parents, understand the is such a broad importance of creating opportunities for so- term encom- cialization, opportunities for our children passing so many with Down syndrome are scarce. As a result facets of who we they have fewer chances to observe, develop, are. Sexuality and practice social skills, which are particu- involves our be- larly important in early and late adolescence. liefs and feelings The subtle messages, looks, and innuendoes about being male or female and the roles and that are bantered between pre-adolescents expectations associated with them. It involves and teens on television and in school are of- our behaviors, interactions, and relation- ten lost for our children. They may have ships with others of the same and opposite Continued on page 4 3 Disability Solutions March/April 2001 Sexuality Education: Building a Foundation for Healthy Attitudes Continued from page 3 trouble making decisions and thinking real- to-day issues that go along with raising a istically about situations. All of these factors child with a disability. Sexuality issues are underscore the need for sexuality education easy to place on the back burner. Once they much more than the general population. are ready, there are few community re- Studies tell us what parents already sources making getting help with teaching know: the risk of exploitation among people about sexuality and related issues difficult. with developmental disabilities is greater ˜Disability of the child. In my experience as than for those without. Some of the reasons a sexuality educator, the abilities of the for this include: child directly affect whether the parent ˜Children with developmental disabilities sees the child as being sexual. Often, the are more likely to be dependent on others more severe the disability, the less likely for meeting their basic needs because of parents feel the need to address sexu- the nature of their disability; ality issues. ˜Children with developmental disabilities Proactive Sexuality Education may have learned to be compliant or passive, especially with authority figures; Too often for families with children with de- ˜Children with developmental disabilities velopmental disabilities, teaching sexuality sometimes don’t have social skills needed revolves around crisis situations. I frequently for the situation; receive calls from frantic parents whose child ˜Children with developmental disabilities was kicked off the bus for inappropriate may have trouble with reasoning and touch. Or calls from school staff wanting pro- judgment; and grams focused on solving a similar problem ˜Children with developmental disabilities rather than addressing the broader sexu- are exposed to larger numbers of caregivers ality issues of the individual before a prob- than their nondisabled peers. lem occurs. Some ideas for teaching about sexuality are addressed later in this article. Each of these factors increases the vulner- All children begin their lives as sexual ability of your child to some type of exploita- people and teaching about sexuality should tion or abuse. occur throughout life. Children with de- Even though the need is greater, many velopmental disabilities are no exception. parents avoid or postpone addressing sexu- Providing information and addressing is- ality issues until it is too late. There are many sues at younger ages allows you to rein- reasons for why this happens including: force concepts over longer periods of time in a wider variety of real-life situations. ˜Their own sexual learning process. Some More and more parents are being asked parents had poor role models for teaching to think long term about goals and expec- and learning about sexuality. tations for children with disabilities. When ˜Age or generation of the parent. Parental we are aware of the normal sexuality is- attitudes about sexuality education usu- sues likely to emerge at various stages of ally mirror the attitudes of society during our child’s life we can more easily identify their childhood. expectations, visualize goals, and be pro- ˜Availability of resources and supports. Par- active about requesting assistance before ents are easily overwhelmed with the day- problems arise. 4 Volume 4, Issue 5 Disability Solutions Sexuality Education: Building a Foundation for Healthy Attitudes Collaborative Teaching ˜Pinpointing where learning difficulties typi- cally occur. Although parents are likely the most influ- Most families are able to share examples of ential and consistent teachers of sexuality, successes and difficulties they have experi- other professionals inevitably become in- enced in the process of teaching their child volved in communicating sexuality messages about sexuality. When shared, parents and as well. Often in programs I share with pro- professionals can use them in sexuality fessionals and parents a sexuality education teaching sessions to improve the relevance triangle to help them remember the impor- for your child. tance of collaborative efforts in this area: Professionals supporting the person with a disability have an important role in teach- Sexuality Education Triangle ing sexuality education as well. Often they have access to materials designed specifically The triangle represents an ideal situation: for people with disabilities that are cost pro- parents and professionals working together hibitive for most families. They can design to support the person with a developmental alternative teaching techniques for address- disability in moving towards sexually healthy ing sexuality issues, help families identify re- adulthood. Even in this ideal situation, the sources within the community, and supple- road that needs to be taken is a difficult ment and reinforce sexuality con- Person with cepts within community environ- one. The journey requires both parents Disability and professionals examine their own val- ments. ues and attitudes on a variety of sexu- Finally, it’s important to re- ality issues. This is often a painful pro- member the person with the dis- cess. A parent I know was very up- ability is at the top of the tri- set when she discovered the school angle for a reason. It is to re- her son attended allowed her son mind us that the needs of to masturbate in a private bath- the individual should be at room with the door closed the forefront in developing when it was not something Consistency and implementing sexu- he was allowed to do at Repetition ality programming and home. Different values? Reinforcement should encourage on- Absolutely. Confused going, open dialogue kid? Probably. Parents & Family Professional between families and Effective parental roles within the tri- professionals. angle include: ˜Understanding personal values and com- The Early Years: municating them to others who are support- Key Concepts and Issues in Sexuality ing the child, Sexuality information and teaching shared ˜Sharing home approaches for dealing with during your child’s early years provides the inappropriate sexual behaviors, beginning of a foundation that will need to ˜Identifying teaching strategies that have be repeated, supplemented, and reinforced worked best for their child or adult, and Continued on page 6 5 Disability Solutions March/April 2001 Sexuality Education: Building a Foundation for Healthy Attitudes Continued from page 5 as your child grows. This foundation pro- care of your body yourself. Teach your child vides a base from which to build, and inter- about washing and caring for his body and face with more advanced sexuality concepts private body parts. Remember to gradually are taught and your child matures. For ex- reduce the amount of help you provide and ample, it is more difficult to teach the physi- give him the responsibility for washing and cal changes that accompany puberty if your caring for all parts of his body. child does not have vocabulary for the geni- When you teach your child about body tals. parts, include information about societal rules associated with them. For example, in Teaching About the Body America, private parts always need to be cov- All young children are naturally curious ered in public places. Most children as they about their bodies and how they work. Chil- mature naturally develop modesty about dren with developmental disabilities are no their bodies. Children with developmental different. Teaching them about their bodies, disabilities often have to be taught to be including the sexual aspects of their bodies, modest. You can encourage modesty early should begin early. Early and open (but pri- by wrapping your child in a towel and mov- vate) discussions about these issues are more ing him to a private place to dress or change. likely to eliminate the guilt, shame, and nega- Identify private places within your home. This tivity that is often associated with the body also means respecting your child’s desire to and genitals and set the stage for future dis- want to be in private when appropriate. cussions with your child as he grows older. Once your child begins to appropriately Helping your child use the correct words use terminology and apply societal rules re- for genitals is one foundational aspect of lated to body parts, it is time to include teaching. It should be done around the same phrases that prevent exploitation. For ex- time your child is learning about other body ample, teach your child that his private body parts and their functions.Teaching about parts are off limits to others. Discuss with private parts, however, should be done in the him circumstances or exceptions to that rule context of private places. For example, dis- such as physicians, parents or grandparents cussing genitals and their function in the during bath time, or other circumstances middle of the living room is not appropriate specific to your child. Emphasize to him the in most situations. It makes more sense to importance of reporting when respect for teach during private bathing sessions. When boundaries is being violated. Make sure he your child is learning to identify eyes, nose, understands who to tell when his privacy or and fingers, he can also be learning penis, body is not respected. vulva, breasts, and buttocks. Professional Some other ways you can teach and sup- literature suggests that when children have port these concepts include: accurate language for private body parts they ˜Read and share illustrated books with your are more likely to report abuse if it occurs. child that have empowering messages When they do, they are more believable in about the body, body parts, and relevant the reporting process because of the vocabu- societal rules. lary they use in their description. ˜Use everyday teachable moments to rein- Another piece of the foundation includes force foundational concepts. For example, understanding body ownership and taking if your child is dressing, remind him to 6 Volume 4, Issue 5 Disability Solutions Sexuality Education: Building a Foundation for Healthy Attitudes

close his door for privacy. If your child ex- instead a result of normal body exploration poses private body parts in a public area and curiosity. For some young children, of the home, quiz or remind him of the rules touching their genitals offers a way to calm related to private body parts. themselves, like before a nap or bedtime or Understanding Gender Differences during particularly emotional times such as a new baby or divorce. The term masturba- Becoming aware of the physical differences tion is used when genital stimulation is more between male and female bodies is another purposefully intended as sexual pleasure or block to the foundation of sexuality knowl- orgasm. Masturbation can occur before pu- edge. Most parents have stories about their berty. Some children may not engage in geni- children’s natural curiosity regarding bod- tal exploration or masturbation, which is ies leading to a game of “you-show-me-and- normal as well. I’ll-show-you” or “playing doctor.” For chil- The most common concern I hear related dren with developmental disabilities or to this issue involves a child with a develop- speech delays, this same curiosity will lead mental disability touching his genitals in to the same, or maybe some different types public places or at inappropriate times. of behaviors. As a young child my daughter When genital touching or masturbation oc- attended an integrated preschool where the curs at inappropriate times and places, clear bathrooms were used by both girls and boys. and direct messages need to be shared. Your Apparently she was aware of differences in child needs to know that touching his penis urination styles because at one point I found (or her vulva) is a private behavior. There- her in our bathroom at home attempting to fore, the behavior requires him to be in or urinate standing up. Fortunately for me, I move to a private place, ideally his bedroom got to her before she completed her experi- with the door closed. If your child does not ment. Needless to say, it was a teachable respond to a verbal prompt, physically move moment and an opportunity to share with him to his bedroom avoiding negative or pun- her some information about being a girl and ishing remarks in the process. Some chil- the differences between how boy and girl dren will have more difficulty being able to bodies work. Another mother had concerns tell the difference between public and pri- about her son who would touch her breast vate locations. When private behavior oc- unexpectedly, and at inopportune moments, curs in public, share messages about the when he was young. This may have been behavior not being appropriate in a public his way of expressing some curiosity about place and attempt to redirect your child to a body part he did not have. another activity. For more perseverative be- Touching or Stimulating Private Parts havior (behavior that he will not stop once Let’s face it: many children discover fairly it’s started), there will be a need for more quickly what we know as adults, that touch- environmental controls and planning. Try to ing your genitals feels good. Although the be consistent in how you respond. terms genital touching and masturbation are Inconsistent responses in these situations often used interchangeably, there are differ- are confusing for your child and decrease the ences. At a young age genital touching is effectiveness of your teaching. Don’t forget generally not purposeful or goal oriented, but to rule out possible physical causes for the Continued on page 8 7 Disability Solutions March/April 2001 Sexuality Education: Building a Foundation for Healthy Attitudes

Continued from page 7 touching (i.e., urinary or vaginal infections, iors I expected from them: I knocked on doors uncomfortable clothing, chafing, irritation and waited for a response before entering from soaps, detergents, etc.). anyone’s room. When they barged into my Privacy room, I asked them to knock. When they took a shower, I spoke through the door For most people, privacy is not an issue. It is rather than entering the bathroom. If they a personal right that’s taken for granted. If needed help, I would help and then let them there are times you need to get away and be know I was leaving so they could be in pri- by yourself, you figure out ways to make it vate. We stopped talking about private things happen. You stay up later to have a private such as bodily functions in public places like conversation with a significant other or get the dinner table or the living room, a habit up a little earlier so you can have quiet time they learned watching their grandmother. Al- before the house erupts with activity in the though my younger daughter grasped the morning. The point is, you understand and concept of respecting a closed door, she value the concept of privacy and its signifi- would often observe the goings on in her cance within your life. sister’s bedroom by peering through the For people with developmental disabilities, small glass windows of her antique door. She privacy is often seen as a privilege rather than felt the need to report what her older sister a right. In addition, the rules of privacy are was doing and offer her interpretation of why. frequently violated by the people who sup- I sewed some curtains to cover my older port them. By adulthood, people with devel- daughter’s windows and attempted to help opmental disabilities are so accustomed to my younger daughter understand the subtle having their privacy violated they are desen- ways she violated her sister’s rights to pri- sitized to the word “privacy” and its mean- vacy. We still have a long way to go, but my ing. This desensitization often results in dif- daughter now verbalizes when she wants to ficulties in discrimination between public and be in private, a big step. private behavior and leads to inappropriate Last summer we experienced some regres- behavior within the community. sion in this area when my daughter began For these reasons the concept of privacy wearing her scoliosis brace. She learned very is something that must be taught early. For quickly how to remove it independently and children without disabilities, privacy can be did so whenever it was convenient. She’d introduced as early as three or four years hoist up her shirt on the playground in full old. The same rule applies for children with view of whoever happened to be watching. disabilities. The best way to teach privacy is This made sense after I realized we had not to model it. When my children were younger been careful about where and when we re- they were constantly ignoring my attempts moved the brace at home. We revisited the at privacy. This is common, but difficult when issue of privacy with her and made sure that you live in a small house with one bathroom. when she was removing the brace at home, After thinking about this, I realized they were she did it in the bathroom or in her bedroom modeling my behavior. I needed to help them with the door closed, which are her private understand the importance of privacy for me spaces. We made sure the professionals who and for them. I began modeling the behav- supported her understood our goals and fol- 8 Volume 4, Issue 5 Disability Solutions

Sexuality Education: Building a Foundation for Healthy Attitudes

lowed suit. Because she was familiar with For example, the physical therapist may the concept of privacy, her understanding of manipulate your child’s trunk and limbs or the rules related to brace removal made the speech therapist may perform types of teaching much easier for all of us. oral stimulation in and around her mouth. The need for privacy is developmental. Outside of early intervention most parents Most children naturally develop some sense have experienced acquaintances or of modesty as their bodies begin to mature strangers who feel the need to pinch and, as they get older, their need for privacy cheeks, poke tummies, tug ear lobes, or and to be in private becomes more impor- give nondiscrimatory hugs to their child be- tant. Respecting their changing needs for pri- cause “children with Down syndrome are so vacy is an important part of their developing lovable and affectionate.” When children have independence. their boundaries repeatedly violated in ways Touch, Affection, & Boundaries like this, even though well-meaning, they lose their sense of what is appropriate. Inevita- The importance of healthy touch and affec- bly, they begin to violate the space of others. tion to healthy sexual development is well documented. Some mental Our society’s attitudes about health professionals suggest people with developmental loving touch in early child- disabilities as sexual human hood creates the capacity for beings is still distorted and healthy adult intimacy later problematic. in life. Caring caresses, lov- Myths regarding people with ing touches, and affection developmental disabilities as help children know how we being “asexual,” “oversexed,” feel about them and gives or “perpetual children” pre- them a sense of worth and vent others from teaching well-being. age-appropriate strategies Helping people with devel- for addressing touch and opmental disabilities under- boundary issues. If parents stand the rules related to or professionals perceive the touch, affection, and bound- person with a developmental aries is difficult. There are a disability as asexual, for ex- variety of issues that contrib- ample, they , may believe that ute to this. the person with a disability Children with special needs does not need information are used to having their boundaries violated and training on appropriate touch and at very early ages. boundaries or other areas of sexuality. When From early on children with developmental people with disabilities are believed to be disabilities are involved in circumstances that “oversexed” or “uncontrollable” the conse- may be different than the general population. quence is constant supervision and care- Early intervention programs typically require ful scrutiny and over-analysis of every the child participate in invasive therapies. sexual behavior or perceptions that the Continued on page 10 9 Disability Solutions March/April 2001 Sexuality Education: Building a Foundation for Healthy Attitudes Continued from page 9 individual requires more affection than the she was struggling in her attempts at fitting average individual. When an adult with Down in. I stepped in (again) to help her identify syndrome is seen as a perpetual child, it pre- other ways to let girlfriends know how she vents others from seeing the child as a ma- felt about them besides hugging. We talked turing individual who needs skills to move about words and phrases she could use with them from childhood behavior to more age- friends that would reflect her feelings. We appropriate behavior. brainstormed a list of different types of touch During a workshop I conducted, a mother that would work such as soft arm squeezes, discussed her 13-year-old son who was hav- high fives, hand on the back, and so on. ing some trouble inappropriately expressing Imagine my confusion and embarrassment affection. Later she shared that her son liked when at her co-ed birthday party I observed to sit on her lap at family gatherings. Her the “nondisabled” girls hanging all over each son was getting mixed messages about af- other. I must say Anna was appropriately fection and boundaries, which created con- distant, yet in this context she looked out of fusion for him. I’m not advocating we starve place. I realized she had been modeling some our children of affection and touch, but I am of the touch and affection she observed in suggesting we begin to think of our children the hallways of her middle school. In the as sexual human beings who likely need context of middle school with her female more guidance and intensive instruction in friends, her expressions of affection may have this area than our other children need. been appropriate. One day the guidance counselor from my Here are some additional tips for helping daughter’s middle school called to discuss your child understand touch, affection, and her gestures of affection with a particular boy boundaries: in her class. Not long after I spoke with her ˜Set rules related to touch and authority about the incident I had to pick her up at figures as early as possible. Too often pat- school to go to a doctor’s appointment. Af- terns of inappropriate affection and touch ter she had gotten her things together and are ignored in early childhood leading to began leaving the room, one of the male para- problems later on. professionals insisted on one of those front- ˜Respect your child’s right to be discrimi- to-front bear hugs. I cringed and was amazed natory regarding who they display affec- the other professionals in the room didn’t tion with regardless of who the other per- even flinch. Is it inappropriate for an adult son is (relatives or professionals). authority figure to be bear hugging an eleven- ˜Communicate your goals and expectations year-old girl in a school setting? I believe so. related to touch and affection with key sup- The rules for touch and affection are often port people. Use the triangle as a guide. fuzzy and change based on culture and con- Consistency in teaching and reinforcing text, making teaching hard and fast “rules” a rules related to touch and affection across difficult task. As a parent I struggle with this environments will increase the likelihood on a regular basis. When my daughter en- of success. tered middle school I noticed an increase in ˜If your child displays affection indiscrimi- physical affection toward her female friends. nately, adopt a set of concrete rules that At the same time, like most kids this age, are easy to learn. For example hand- 10 Volume 4, Issue 5 Disability Solutions Sexuality Education: Building a Foundation for Healthy Attitudes shakes, head nods, and verbal greetings 4) Communication- Talk to your child after the are appropriate gestures for greeting au- touch has occurred. Describe what you thority figures. Choose one and use it con- did, and why you did it. For example, “To- sistently. Provide one or two alternatives gether, we just washed your whole body, for the inappropriate touch you are at- now you are clean and ready to start the tempting to eliminate. Remember, we don’t day.” Discussing touch and feelings about want to eliminate touch and affection com- touch paves the way for future discussions. pletely, but simply make them more socially acceptable. Identifying and Communicating Feelings Within the context of sexuality education, David Hingsburger, a Canadian author and being able to communicate feelings is an lecturer on sexuality, addresses modeling we important interpersonal skill. For example, can do for more intimate touch. In his book, being able to identify and respond to the I Openers: Parents Ask Questions About Sexu- emotions of a friend or partner enhances ality with Children with Developmental Dis- abilities, he describes a four-step process for helping children differentiate between nec- essary, intimate touch such as physician examination, diaper changing, and hygiene assistance. 1) Ask permission before touching. Asking permission helps promote a sense of ownership. Develop a “private” tone of voice that is softer, gentler, and quieter than your speaking voice. If your child has limited verbal abilities, give them time to respond in their own way. Ask first, touch second. 2) Describe what you are doing. communication and intimacy. This skill also Using the same soft voice tones, describe provides a basis for discussions surround- what you are about to do, then talk while ing feelings about body changes and touch. you touch. Explain what you are doing and Being able to recognize and respond to emo- why. This encourages your child to ask tions is complex for most of us. People with questions, feel involved in the process, disabilities struggle with this as well. Your teaches your child language about his child may have trouble expressing emotions, body, and creates a sense of safety for him. express emotions inappropriately, or misin- 3) Facilitate participation. terpret feelings in others. As parents, our goal for our child with a dis- You may need to teach your child how ability should be partial participation in the to label his feelings and respond to others’ necessary touch. If you are teaching hygiene emotions. You can do this by labeling your skills, for example, one of your goals could be feelings more frequently, in a way that is to allow your child to do the washing while you genuine, and provide reasons for the feel- talk through the closed shower curtain. Continued on page 12 11 Disability Solutions March/April 2001 Sexuality Education: Building a Foundation for Healthy Attitudes Continued from page 11 ings: “I was frustrated that I forgot my to understand how their actions and words lunch today.” Encourage your child to la- affect others, and why certain behaviors are bel his own feelings in association with an appropriate and others are not, we begin event. For example, “How did you feel when teaching and coaching. Diane Maksym in her you won that race?” book Shared Feelings presents steps for help- My daughter and I used to play a game ing you teach your child social skills: when she was small. I called it the “feelings” ˜Decide on a specific skill you want to teach game. I would make an exaggerated facial ˜Demonstrate the expected behavior or re- expression and she would have to guess how sponse for your child. I was feeling. For example, a yawn would ˜Practice or role play the behavior in a safe indicate I was tired. A smile: happy. A hand setting with supportive individuals or fam- covering a wide-open mouth, surprised. ily Give your child feedback (i.e. where Then it would be her turn. She would fold could improvements be made? What did her arms and wrinkle her face into a frown he do well?) and I would guess the feeling she was trying Don’t assume that if your child can demon- to express. The idea was for this exercise to strate a social skill in a practice setting, he help her develop a “feelings” vocabulary, help will transfer that skill to a real-life setting. her to cue into non-verbal facial expressions, Many children with Down syndrome have and encourage her to verbalize her feelings difficulty generalizing skills and will need when she needed to. As she became older, I plenty of practice in real-life social interac- would often model a feeling, ask her to guess tions. The new social skill should be taught how I was feeling, and then provide an expla- in a variety of settings with many different nation for why I was experiencing the feeling. individuals. Social Skills When things do not go exactly as you had An important goal of early sexuality educa- practiced, talk about the situation and reas- tion is maximizing our child’s ability to con- sure your child that it takes time to learn. fidently interact and relate to others. Un- Talk about what he might have done differ- derstanding and being able to apply social ently and try to begin and end your discus- skills is an important piece of that goal that sion with comments about what he did well often proves to be more challenging for chil- in the situation. When your child success- dren with Down syndrome. Learning and fully masters the skill, remember to reward applying social skills typically requires con- and praise the behavior. Other strategies and crete instruction and coaching throughout life. resources that help reinforce and teach so- Early social skills training begins with us, cial skills include: the parents. At very young ages, our chil- ˜Play time. For young children, play time is dren learn by modeling our actions and be- an excellent time to begin modeling and haviors. We begin teaching manners, for ex- teaching social skills. For example, man- ample, by saying “please,” “thank you,” and ners can be taught while playing with dolls “excuse me” in the presence of our children. or sharing toys. Later we can encourage our children to prac- ˜Social Stories. Social stories are simple nar- tice the behaviors themselves in social situ- ratives that teach responses to a social or ations. Gradually as our children are able problem situation. The stories, often used 12 Volume 4, Issue 5 Disability Solutions Sexuality Education: Building a Foundation for Healthy Attitudes with children who have autism, include a child’s understanding of who they are as a descriptive sentence about the environ- man or a woman. Part two of this series, ment, a directive or appropriate response, Building On the Foundation: The Adolescent and reactions of others in response to ex- and Early Adult Years, will discuss sexuality hibiting an inappropriate behavior. education at home and at school for adoles- ˜Social Skills Board Games. There are a cents and adults. myriad of games available that focus on teaching and practicing appropriate social Terri Couwenhoven, MS, is the mother of two skills (see resources). daughters, one of whom has Down syndrome. She ˜Role Plays and Sociodrama. Role playing is an AASECT certified sexuality education con- is a wonderful way to practice new social sultant and Clinic Coordinator for the Down Syn- skills. It can be done with a group or more drome Clinic of Wisconsin.You can contact by e- privately with just you and your child. Us- mail: [email protected] or by US Mail: TC Ser- ing Role play and sociodrama allows your vices, 209 N. Spring Street, Port Washington, WI child to explore different outcomes in social 53074. situations without lasting consequences. These are some of the key components to References: building a foundation of positive, proactive ™ Couwenhoven, T. (1992) Beginnings: A Parent/Child Sexuality Program for Families with Children Who Have sexuality education. As you can see, these Developmental Disabilities (2nd ed). Madison, Wiscon- concepts are not separate issues specific to sin: Wisconsin Council on Developmental Disabilities. sexuality but are important in other ways ™ De Freitas, C. (1998) Keys to Your Child’s Healthy Sexuality. Hauppauge, New York: Barron’s. for your child such as developing a healthy ™ Haffner, D. (1999) From Diapers to Dating: A self-esteem and improving communication. Parent’s Guide to Raising Sexually Healthy Children The activities are easy to include with other New Market Press. ™ Hingsburger, D. (1993) I Openers: Parents Ask Ques- areas your child will learn when he is young. tions About Sexuality and Children with Developmen- As your child grows, you can continue to tal Disabilities. Vancouver, British Columbia, Canada: build on this foundation and nurture your Family Support Institute Press. ™ Kempton, W. (1993) Socialization and Sexuality: A Comprehensive Training Guide For Professionals Help- ing People With Disabilities That Hinder Learning. Haverford, Pennsylvania: Winifred Kempton. ™ Monat-Haller, R. (1992) Understanding and Express- ing Sexuality: Responsible Choices for Individuals with Developmental Disabilities. Baltimore, Maryland:Paul Brookes Publishing. ™ Moreno, K. (1998) Surviving in Society: The Impor- tance of Teaching Social and Problem Solving Skills. Down Syndrome News, 22 (8), 103. ™ Sexuality Information and Education Council of the United States (1991) Guidelines for Comprehensive Sexuality Education K-12. ™ Sexuality Information and Education Council of the United States (1995) Right From the Start: Guidelines for Sexuality Issues Birth to Five Years . ™ Staub,D. (1998) Delicate Threads: Friendships between Children with and without Special Needs in Inclusive Settings. Bethesda, Maryland: Woodbine House.

13 Disability Solutions March/April 2001 Book Review

Sexuality: Your Sons and Daughters with Intellectual Disabilities

Sexuality: Your Sons and Daughters with In- tellectual Disabilities by Karin Melberg Schwier & Dave Hingsburger, M.Ed. Pub- lished by Paul H. Brookes Publishing, 2000. ISBN: 1-55766-428-5. $24.95. 800/638- 8539. www.pbrookes.com. The authors define sexuality as “the whole person: your thoughts, feelings, attitudes, and behavior towards yourself and others. Learning how, when, where, and with whom to interact and express our sexuality as a From the time my daughter was born 18 male or female is very important to our well years ago I have devoted much of my free being and to how well we will be welcomed time researching for information that would and accepted by our community.” In this help her achieve milestones in her develop- context, the authors deal with many pieces ment, in all aspects of her development. of the puzzle that come together encourag- When I had difficulty finding information, I ing the development of a strong and healthy would go to other parents with my questions. sexuality. Responsibility, self-esteem, expec- They, in turn, gladly shared stories, advice, tations, relationships, independence, and and suggestions. That worked quite well until dreams are explored throughout the book I asked questions about sex and sexuality. in a respectful manner. In doing so the au- When I did, the silence from other parents thors present a natural, positive connection was powerfully absolute. Sex and sexuality about sexuality that exists in everyone’s life. for people with disabilities is still taboo, still The authors point to similarities of desires, dreaded, still feared, and still ignored by needs, and feelings of those with and with- many parents and professionals. It is an out disabilities. They continually emphasize unknown territory where few wish to travel the importance of teaching people with dis- or explore. abilities about themselves and their feelings Authors Karin Melber Schwier and Dave and that it is never too late for this educa- Hingsburger have done more than write a tion to begin. book. They have provided a comprehensive Some of the topics in the book may be dif- guide for parents into this complex area of ficult for parents to read. However the au- life. Parents, significant others, and people thors have done a good job of presenting with disabilities are introduced as “your them in a sensitive, interesting, and guides” through the book. These guides share thought-provoking manner. Candid com- vignettes from their lives that are sometimes ments for “your guides” as well as questions- charming, sometimesreview humorous, and some- and-answer sections in each chapter provide times highly emotional. tangible, real-life examples that makes edu- 14 Volume 4, Issue 5 Disability Solutions

Sexuality: Addition to “Healthy Lifestyles in Adults Your Sons and Daughters with Down Syndrome: A Survey” with Intellectual Disabilities In the last issue of Disability Solutions, Volume 4, Continued from page 14 Issue 4, we neglected to include the references for the article, “Healthy Lifestyles in Adults with Down cating your family and child easier. This book Syndrome: A Survey.” For those wishing to investi- serves as a much-needed blueprint for those gate past studies related to the development of the questions and unpredictable moments all article, they are listed below. Thank you for your parents dread regarding sexuality giving us patience. –JEGM the direction we need to encourage healthy References sexuality and a strong sense of self and Š Ceseldine, S. (1997) Obesity in Community Set- confidence in our children. tings: Another Perspective. AAMR News and Notes. For me, this book is a wonderfully posi- 10:2. tive, straightforward teaching tool that all Š Daley, W. (1996) Dealing with Obesity in Commu- parents will benefit from reading wherever nity Living Arrangements. AAMR News and Notes. they are in the journey of parenthood. It is 9:6. definitely going on my personal “Top Ten List” Š Food Surveys Research Group, U. S. Department of parenting books. of Agriculture (1999) 1996 Diet Health and Knowl- edge Survey, Beltsville, MD: USDA. (http:// www. barc. usda. gov/ bhnrc/ foodsurvey/ home.htm) Cheryl Ward is the mother of two teenagers, the old- Š Fujiura,G., Fitzsimmons, N., Marks, B., and est, her daughter, has Down syndrome. She is the Edu- Chicoine, B. (1997) Predictors of BMI Among Adults cation Service Coordinator at the Endependence Cen- with Down Syndrome: The Social Context of Health ter (a Center for Independent Living) and the editor of Promotion. Research in Developmental Disabilities. the Tidewater Down Syndrome Association’s newslet- 18:261-274. ter, Down Right Active. Cheryl and her family reside in Š Golden, E. and Hatcher, J. (1997) Nutrition Knowl- Virginia Beach, Virginia. edge and Obesity of Adults in Community Resi- dences. Mental Retardation. 35:177-184. Š Kennedy, M. (1997) Self-Advocate Responds to Dealing with Obesity. AAMR News and Notes. 10:2. Š Lack, A. National Down Syndrome Society Confer- ence, 2000. E-mail correspondence. Š Luke, A., Roizen, N.J., Sutton, M., and Schoeller, D.A. (1994) Energy Expenditure in Children with Down Syndrome: Correcting Metabolic Rate for Movement. Journal of Pediatrics. 125:829-838. Š Martz, J. National Down Syndrome Congress Con- ference, 2000. E-mail correspondence. Š Rubin, S.S., Rimmer, J.H., Chicoine, B., Braddock, D., and McGuire, D.E. (1998) Overweight Preva- lence in Persons with Down Syndrome. Mental Re- tardation. 36:175-181. Š U.S. Department of Health and Human Services (2000) Healthy People 2010 Conference Edition. Stefanie Ward after a visit to Glamorshots. (Stock Number 017-001-00543-6, ISBN 0-16- 050260-8) Washington, DC: U.S. Government Printing Office. http://www.health.gov/ reviewhealthypeople/ 15 Volume 4, Issue 6 May/June 2001 Focus: Sexuality Education Part Two of a Two-Part Series Sexuality Education: Building on the Foundation of Healthy Attitudes

by Terri Couwenhoven, MS The first installment of this two-part series explained the importance of parents as primary sexuality educators. When sexuality concepts are taught early, they provide a foundation for helping your child move toward a sexually healthy adulthood. The article included strategies for parents, as teachers, to introduce key concepts over time. As our children with Down syndrome grow and develop, it is important to continue reinforcing earlier learning, while adding new information and concepts. As with all children, schools, churches, and other agencies will begin playing a larger role in augmenting sexual learning.

Building on the Foundation: The Growing Years

hen your child is around 8 or 9 years old where your child is regarding sexual learning. If (a bit later for boys) they enter a phase I you are just beginning to understand your tasks W call “the growing years.” This rapid growth as your child’s primary sexuality educator and phase, typically referred to as puberty, marks the have not begun to formally work on the concepts beginning of adolescence. It is a time that includes and issues I discussed in the first article, don’t significant physical and emotional changes and pre- be hard on yourself. Instead use these growing sents challenges for all children, including those years as a time to introduce these concepts and with Down syndrome. help your child feel good about who they are as a For many families this stage is a “whack-over- sexual person. If you’ve already introduced those the- head” reminder that their child with a disabil- foundational concepts, keep in mind earlier in- ity will develop and mature just like everyone else. formation will likely need considerable repetition It is also be an opportunity to evaluate and assess Continued on page 3

Building On the Foundation: Sexuality Resources for

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From the Editor 2 Volume 4 Index ○○○○○○○○○ 17 ○○○○ in this Shareissue Your Thoughts ○○○○○○○ 20 Disability Solutions May /June 2001

www.disabilitysolutions.org [email protected] phone: 503-244-7662 fax: 503-892-0338 ISSN: 1087-0520 Disability Solutions is published at no cost to readers four times yearly by The Enoch- Gelbard Foundation, a nonprofit, indepen- dent, private foundation. If you would like to stop receiving this publication, please write to the publication address. Readers are welcome to submit articles, reviews, letters to the editor, or photographs to the publication address. Please include your name, address, e-mail, and phone num- ber with your submission. It is helpful if sub- missions are sent on disk or by e-mail in MS Word or another PC compatible format. If you cannot, please send submissions typed double-spaced. All submissions will be reviewed and edited for content and style. No contribution or subscription fee is required to receive Disability Solutions. If you would like to help with the cost, you may send a tax deductible contribution to The Enoch-Gelbard Foundation at the publication address. A goal of The Enoch-Gelbard Foundation and Disability Solutions is to make informa- tion widely available, free-of-charge to fami- lies, and professionals. The Foundation sup- ports sharing information in the public do- main, especially for families. You can down- load back issues of Disability Solutions from our website (see above) or request a printed copy at a cost of $2.50 while supplies last. Reprint Policy 1. If you would like to reprint material from Disability Solutions at no cost to others, you do not need to request permission When you do reprint material, please in- clude the author’s name and list Disability Solutions as the source. When possible, it would be nice to see a copy of the article reprinted or the URL of the web page where it is located. 2. If you would like to reprint material from Disability Solutions in a book, newsletter, electronic, or any other format for which you may receive any payment, permission is required. Please send requests for permission to the publication address. Opinions and information published in Disability Solutions are not necessarily those of The Enoch-Gelbard Foundation. from the editor Copyright © 2001, Disability Solutions. 2 Volume 4, Issue 6 Disability Solutions

Building on the Foundation: The Growing Years

Continued from page 1 and reinforcement as your child attempts to ap- her female classmates in watching a video that I ply skills in new and different situations. Regard- had previewed previously. When I asked her less of what sexual learning has occurred, new about the movie, it was apparent she was so fo- topics related to puberty and relationships will cused on the socialization of the characters (“two arise. This article addresses the topics and con- girls who giggled a lot”) that she missed key pu- cerns that go beyond the foundational concepts berty information that was presented. to sexual learning. Puberty education for children with cognitive disabilities should focus on body changes, hy- Understanding Puberty giene and grooming, awareness of sexual feel- ings, rules for public and private behavior, pri- When it comes to physical sexual development vacy for self and others, body ownership, and in children, there are few differences between boundaries for self and others. It is also helpful children with and without developmental dis- to incorporate problem-solving approaches into abilities. In other words, an eleven or twelve year- puberty education. For example, a brainstorm- old with Down syndrome will experience the ing session with males regarding what to do when same physical signs of maturation such as breast spontaneous erections occur at inopportune mo- development, pubic hair, body odor, at around ments helps to prepare them for those situations. the same time as other children. Consequently, Similarly in a female puberty program, I spend targeted teaching and learning about puberty time towards the end of the series working on should begin just before puberty around the common problems such as what to do when your same time other children begin to learn about period starts and you do not have supplies. To- changes. For girls this usually occurs around age gether we discuss how those problems can be 10 and for boys around age 11 or 12. resolved. Although inclusive classroom settings may Hygiene and Grooming provide a teachable moment, I encourage par- ents to advocate for additional programming Puberty is a time when extra instruction about adapted for their child who has a cognitive dis- hygiene and grooming are needed to help our ability. In the inclusive classroom, it is common children achieve social acceptance. Hygiene is for a great deal of information to be covered in more related to cleanliness while grooming cap- shorter periods of time using more sophisticated tures the rest of the details that relate to looking teaching materials. For pre-adolescents who al- good: good haircuts, well manicured nails, teeth ready understand some of the basic concepts of brushing and flossing, shaving, etc. For most puberty, it may be an opportunity for reinforc- children, disabled or not, a renewed interest in ing previous learning. For children with cogni- how they appear to others is normal. I encour- tive disabilities, often the most relevant issues age parents to use cultivate this stage to help such as grooming and hygiene and appropriate their child develop good habits. behavior, are ignored completely or buried in a Teaching hygiene skills for children with Down wealth of less relevant material. The topic of syndrome usually means helping them under- puberty was introduced at my daughter’s el- stand steps in bathing. Learning to be indepen- ementary school in fourth grade within a guid- dent with routine hygiene practices is our goal, ance class led by the school counselor. Since my but getting there will take time. As parents we daughter and I had had some initial conversa- forget how complicated hygiene can be. Many tions about what puberty meant and the changes parents have found teaching to be more success- that would happen to her, she joined the rest of ful if they break tasks into smaller steps. For Continued on page 4 3 Disability Solutions May /June 2001

Building on the Foundation: The Growing Years

Continued from page 3 example, the showering process alone can in- we discovered she was spending as little time as volve learning how to adjust water temperature, possible directly under the showerhead. She shampoo hair, rinse hair, wash the upper body, explained that the water “hurt” (she did not like wash the lower body, rinse the body, etc. Teach- the high pressure shower stream). Adjusting the ing one step at a time, your child is more likely showerhead solved the problem. Another time I to be successful. My favorite resource for teach- switched shampoo brands (and forgot to tell her). ing the steps in showering is the First Impres- During her next few showers she became con- sions series published by James Stanfield com- fused about which bottles were for what. She pany (seepage X). I routinely use this video in my mistakenly used lotion for soap, soap for sham- puberty programs. The video includes exaggerated poo, and so on. Needless to say, she’d come out comparisons of good vs. bad hygiene and the of the shower less clean that when she went in. potential responses from others,which is some- We eventually purchased a shower bucket spe- thing our children don’t often see. Although it may cifically for her hygiene and grooming stuff. This be cost prohibitive for most families, your local prevented future confusion. parent organization may be able to purchase a Remember that taking care of our bodies is a copy for their lending library so families can check big task and will require gentle persistence over it out. School districts also have budgets to time much like other things we try to teach our supplement curricula being introduced in school. children. Other tips to consider include: Potential Problems with Hygiene & Grooming ¨ Allow your child to become an active partici- pant in choosing and selecting hygiene prod- Lack of interest in maintaining hygiene and ucts. There are many “cool” products our there. grooming can be a problem for some families. If Let them choose which ones they like best and your child is resistant to hygiene rituals on a they will be more likely to use them. regular basis, look for ways to use incentives or ¨ Keep things simple- For example shower sup- methods that will reduce your child’s resistance. plies should include a bar of soap (for people You know your child best. Discovering what will with Down syndrome a moisturized soap such work best to keep them motivated to be well- as Dove or Lever is best) and shampoo. groomed may take some creative thinking. For ¨ Teach hygiene/grooming in small steps. Work example, if there is significant resistance to show- on one step at a time until your child masters ering at the end of the day (when fatigue and them. Then move on to the next step. crabbiness is often at its peak), morning show- ¨ Praise and positively reinforce good hygiene ers may be less troublesome. Consider includ- and independence with hygiene as a normal ing positive reinforcement strategies as a com- part of growing up. ponent of completing hygiene routines. It is im- ¨ Pay attention to clothing, hairstyles, and fash- portant to remember to gradually reduce the ion trends you see on your child’s peers if your use of reinforcers as your child gains indepen- child doesn’t notice. If they do notice these dence. . The reward for showering, for example, trends, take them shopping! may include watching a video, alone time, or ¨ Introduce them to grooming routines that are other things your child likes to do before going relaxing, pleasurable, and appropriately social- to bed. a good haircut, manicures, pedicures, facials, Be mindful of barriers that may be prevent- makeover parties lead by experienced make ing your child’s progress. Our daughter had a up artists, etc. difficult time with the shampoo rinsing portion of the shower which resulted in an unsightly “flake” problem and unclean-looking hair. Later

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Building on the Foundation: The Growing Years Social Skills Assertiveness as a Social Skill Part one of this series covered the importance of For most children, it is natural for parents to modeling and teaching social skills (manners, allow them to become more verbal about express- etc.) at early ages. As your child develops, build- ing their choices and decisions as they get older. ing and expanding their repertoire of social skills Being able to express needs, desires, choices, requires ongoing coaching. When it comes to and opinions is a set of skills we need in order to teaching social skills, most experts agree that be independent and develop and sustain healthy individuals with cognitive impairments need in- relationships. For example, the skills needed to dividualized (based on unique strengths and meet new people, extend social invitations, ask, weaknesses of the individual), targeted (focused or accept a proposal all require assertiveness. on specific behavioral goals) instruction over time Assertiveness is also important when we dis- in a variety of settings. This means we can’t as- cuss self-protection and exploitation prevention. sume that an inclusive environment automati- Individuals with developmental disabilities who cally means our child’s social skills will develop are positively reinforced for being compliant, automatically. As parents we need to contrive passive, and obedient have difficulties with this social situations in concrete ways to allow for skill. As parents, we need to respect, and in ap- safe practice fairly often. propriate situations, encourage non- compliance One of the challenges for parents is being aware when it keeps them safe. Avoid using statements of which social skills to work on with their teen- like “listen to...” or “do what they say” statements. ager. Some examples of basic social skills include: The majority of sexual abuse among people ¨ Using appropriate greetings such as hello, with developmental disabilities is perpetuated by goodbye, and knowing when to shake hands someone the victim knows and trusts. Often we or offer a hug. lull our children into trusting others’ opinions ¨ Making eye contact when speaking or listen- about what is best for them rather than allow- ing to another person. ing them to choose. While not easily undone, ¨ Using manners appropriately such as saying when people are given instruction, support, and “thank you,” “ I’m sorry,” or “excuse me.” opportunities to practice assertiveness, tremen- ¨ Offering sympathy or support to others who dous growth can be seen. Allowing our children are feeling badly. to assert themselves with friends, family, and Keep in mind the early teen years are also a time others authority figures early on is a practical when our children begin to show an interest in experience and something that can be done on developing relationships. This requires an en- a regular basis. tirely different set of social skills. Some examples Recently, my daughter and I planned to meet of social skills needed for dating and relation- some friends for lunch at McDonald’s. Following ship development include: their meal, Anna and her friend decided they ¨ Introducing yourself and others to someone, each wanted an ice cream for dessert. I gave Anna ¨ Initiating conversations with others, a dollar, my friend did the same with her daugh- ¨ Arranging or accepting a date with a friend, ter. The girls went up to the counter to order ¨ Active listening, and a short time later, her friend returned with ¨ Understanding emotions, both verbal and non- a McFlurry and Anna, head hanging and frus- verbal, trated, returned with nothing. Her friend had ¨ Finding similarities to others, ordered first and when she realized she needed ¨ Giving and receiving compliments, and more money, she asked for or took (we’re still ¨ Compromising. not sure) Anna’s dollar. I am still amazed at what an impact this situation had on Anna (she still

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Continued from page 5 talks about it). Often life experiences such as moving away from the inner circle. The basic these become significant and memorable teach- concept of the Circles program is the closer the ing tools for our children. Don’t be afraid to use circle is to you, the more intimate the relation- them, but do frame them in a proactive and posi- ship. Understanding the rules that apply to each tive manner. David Hingsburger also reminds us circle helps clarify appropriate talk, touch, and in his book, Just Say Know: Understand and behavior for various people. This understanding Reducing the Risk of Sexual Victimization of People helps people gain control over their relationships, with Developmental Disabilities, “unless we can their bodies, and feelings. Other relationship say no to small things we won’t be able to say no topics could be include: to big things.” ¨ Selecting a partner; Relationships ¨ The cycle of relationships: how they begin, grow and change; and Helping your child understand relationships and ¨ The characteristics of healthy vs. unhealthy the implications for how those relationships af- relationships. fect the way we touch, talk and behave with each By helping our children understand different re- other can be an abstract concept but is a critical lationships and appropriate behavior within re- component of sexuality education. Most curricula lationships, they will recognize inappropriate designed for individuals with developmental dis- behavior more easily. For example, when they abilities break down types of relationships into encounter a person who is invading their space, the following categories: giving them gifts, or acting like a best buddy œSelf: It is difficult for most of us to develop when they only just met (all examples of behav- healthy relationships with others unless we ior that exploiters use to gain trust) they will first have a solid understanding of who we are recognize the inappropriateness of these behav- and what we’re about and feel good about who iors more readily. Similarly, if they have been we are. Being able to have a relationship with given information about rules related to touch- our self is an important foundation for future ing private parts or that being hurt (physically, relationship development. verbally, or sexually) is not a part of a healthy œFamily, Friends, Community/Professional relationship, they can more easily evaluate their Helpers, Acquaintances/Strangers. relationships and get help. There is more to relationships, however, than When teaching relationships and appropriate being able to categorize them. Therefore, instruc- behavior within relationships, it is important to tion around relationships should also include: look holistically at the world of the individual ¨ The roles these relationships play in our lives, who may be having difficulty with these issues. ¨ Societal rules for behavior such as talk and A person who is isolated from others is more touch boundaries, within these different rela- likely to latch onto the first person who pays at- tionships, and tention to them regardless of the appropriate- ¨ An explanation of the consequences when so- ness or quality of the relationship. The bottom cietal rules are not followed. line is when individuals with developmental dis- One of the more popular teaching tools for help- abilities do not have opportunities to develop re- ing individuals with cognitive disabilities learn lationships with others. Their ability to discrimi- and understand these concepts is the Circles nate between appropriate and inappropriate re- system (see page X). This resource visually pre- lationships is diminished, making them more sents levels of relationships within concentric, vulnerable to exploitation. colored circles. The inner circle representing the Reciprocity within Relationships relationship we have with our self (the most im- Within many families, the person with Down syn- portant relationship), with additional circles drome or other disability grows up experiencing

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an elevated sense of “specialness.” This phe- like most of us do, there was plenty of time. She nomenon arises from repeated opportunities for called me because she discovered her son, now being the center of attention within social con- a teenager, had been sexually exploited by his texts and often, over time, can result in an un- peer who lived next door. What was disturbing, appealing self-centeredness that makes it more to both of us, was not that the exploitation had difficult to develop meaningful, or any, relation- been perpetuated by his good friend, but that it ships. Individuals in these situations have a more had been going on for quite some time. Her son difficult time understanding the concept of give never told her. She was able to pick up on a subtle and take that is necessary within healthy rela- non-verbal cue in the car one day that made her tionships. A friend of mine, who supports indi- think she needed to figure out what was going on. viduals with developmental disabilities living in Later she told me she didn’t think anything could the community, worked with a woman who had happen to her son since they lived in the country difficulty with social skills and the concept of where her son was fairly isolated from others. mutuality. She often invited her friend over so Those of us who work in the field of sexuality she could model appropriate etiquette, such as understand that people at the greatest risk of offering a soda or snack and occasionally pre- exploitation are those individuals who are insu- paring a formal dinner. When she visited her lated, protected or sheltered from what can hap- client’s house, these gestures were not usually pen. My philosophy and response to parental reciprocated. On one occasion she attempted to fears about exploitation never waivers: the best give her client a prompt by asking if she could way to help your child avoid exploitation is to have a soda. Her client’s response was “They’re give them the tools they need to be empowered in the pantry and that’ll be 50 cents.” and educated. Information and language are Our children need to understand at early ages powerful tools and one of my primary motiva- the importance of mutuality and interdepen- tions for writing this article. dence. The world can’t and shouldn’t always re- Be leery, however, of sexuality programs ini- volve around them. There will be times when they’ll tiated for the sole purpose of keeping people safe need to do more giving than receiving such as in rather than comprehensively addressing a wide jobs and relationships. Many adults I know with variety of issues that contribute to healthy sexual disabilities would love more opportunities to be a adulthood. A good sexuality program can and part of the community giving of themselves in pur- should do both. For example, teaching poseful ways. Facilitating this can increase their assertiveness skills, boundaries and appropri- understanding of the meaning of reciprocity, help ate behavior, sexual language for body parts, and them feel better about themselves, and increase characteristics of healthy and unhealthy rela- meaningful relationships in their lives. tionships help prevent exploitation, but also Exploitation Prevention make your child feel good about who they are and that goes a long way in making them less When I lead education sessions for parents who vulnerable to exploitation. Other important skills have children with special needs, one of their and information include: most pressing concerns is how to keep them safe. ¨ Understanding common tactics used by abusers As much as we’d like to believe, as parents, we ¨ Discussing laws and societal rules regarding are able to protect our children from danger, inappropriate touching such as child/adult exploitation, and other unfortunate occurrences touching, boss/employee touching. the truth is it’s impossible. ¨ Developing basic safety skills such as say no, Not long ago I received a phone call from a get away, buddy systems, and so on. distressed mother who had attended a workshop ¨ Reporting skills. This includes identifying at least I had done some ten years earlier. Her son had three key people who they can tell and empha- been fairly young at the time and she believed, sizing persistence when they are not believed. Continued on page 8 7 Disability Solutions May /June 2001

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Continued from page 7 Adolescence and Adulthood now have her put the stamps and return labels on the envelopes. Adolescence can be a difficult time for all chil- A few days later, my husband found Anna giv- dren. Teens with disabilities are no exception. ing herself an albuterol inhaler treatment. This Not only are they developing physically, but psy- required a little talk about medicines, the con- chosocially as well. During this phase all teens sequences of overdosing, label reading, and why struggle as they try to understand who they are adult assistance is a good idea. We did begin and what they can become (identity). They’re having her keep track of the time between doses attempting to understand, in their own way, how so she could remind us when she was due. to get along with others (relationships and inti- I was very proud of her a few weeks ago when macy) and learning how to become more inde- she just decided to call me on the car phone to pendent. For the average teen, these are diffi- let me know she was home from school. We have cult issues to sort through. For teens with Down always kept our phone numbers near the phone syndrome, extensive discussions and coaching for this purpose. She took the initiative to call will be necessary. me, rather than waiting for me to call her. All of these incidences were emerging attempts Independence at demonstrating her need to be independent. One aspect of psychosocial development for all Managing and organizing homework, planning pre-adolescents is an evolving separation from social activities, delegating household chores, or parents and increased need for independence allowing incremental “home alone” time, are and autonomy. Understanding this a normal part other examples of ways to help encourage and of growing up should be our cue for starting to reinforce independence. create or cultivate opportunities that encourage growth and independence. Understanding Their Disability Exploring the issue of identity for our children often means coming to grips with their disabil- ity. We began talking about Down syndrome with Anna at a very young age. I’m certain she didn’t completely understand it, however, until her first year in middle school. For the first time since Kindergarten, she had another student (new to the district) with Down syndrome in her homeroom. Anna is a visual learner and I’m con- vinced that by observing her classmate with Emily & Jon Derr on a trip to Israel. Down syndrome, she more clearly understood what it meant for her. I was unaware of her in- Our twelve-year-old daughter has recently ternal identity struggles until one October started to indirectly express her need and desire evening when we were doing homework. She was to be independent. One day Anna decided to mail having some difficulty with an assignment when a stack of letters that she noticed on our table. she suddenly put her pencil down and asked, Without telling any of us, she picked them up “Mom, do I have Down syndrome?” (she often and mailed them at a mailbox a few blocks from checks in with me on things she already knows- our house even though most of the letters had just to make sure). “Yes, you have Down syn- no stamps or return labels. We positively rein- drome”, I responded. She sighed, then shrugged, forced her helpfulness, emphasized the fact that with frustration, hung her head in her hands she should tell someone when she is leaving and and said, “I just want to be a regular kid.” It

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wasn’t until then that she began to see with ac- young gay women with a developmental disabil- curacy her differences. As much as I wanted to ity. Although she was interested in the informa- paint a rosy picture, I knew deep down we needed tion, it became clear that her real need was for to discuss her limitations. She saw and under- support and acceptance. Her efforts at seeking stood them on a daily basis, and I needed to be out help from a non-supportive staff person had honest. We talked about what it meant to have resulted in more rigid social restrictions (pre- Down syndrome. I told her it would often take venting her from seeing her partner), alienation her longer to learn new things and that some- from family, and isolation from roommates. times people had a harder time understanding Other important points to remember regarding her. Then we discussed ways she was like every- sexual orientation: one else. We talked about her future, about hav- Š One same- sex encounter, crush, dream ing a job and living on her own. Parents who can does not necessarily mean your child is gay speak honestly with their children about their or lesbian. Occasional homosexual experi- disability model acceptance that is helpful in fos- ences are a fairly common phenomenon tering a clearer sense of self for the child. How among teens and not a good predictor of does this relate to sexuality? Feeling okay about sexual orientation. every aspect of who we are, is a critical founda- Š Although many individuals who are homo- tion for healthy self esteem. Our children must sexual report feeling different early in life, feel good about who they are before they can be- acceptance of identity usually occurs in gin to develop healthy relationships with others. adulthood. Sexual Orientation Š Thoughts and fantasies are a better indicator of sexual orientation than behavior. Adolescence is a time when an understanding of If you suspect you child may be gay, they will sexual orientation begins to materialize. Although need information and support just like every- there is very little literature on the incidence of one else. Research national and community re- homosexuality and people with developmental sources that exist and be prepared to help them disabilities, we need to assume it mirrors the gen- access the materials they may need to accept eral population. Because people with cognitive and feel good about who they are. disabilities often experience limited access to partners and choices in living arrangements, Dating and Relationship Development determining their sexual orientation can be more Beyond the relationship concepts that are complicated that it is for the nondisabled. For taught, I’ve listed other issues within the realm example, among people with developmental dis- of relationships that repeatedly surface for the abilities who live in gender-segregated homes clients I teach and/or with parents who have often same-sex encounters are exhibited (much teens and adults with developmental disabili- like behavior that occurs in prisons). In these ties. I don’t have magic answers on some of these situations residents often have fewer opportuni- issues but I do believe that becoming aware of ties to choose with whom they will form relation- the issues is the first step in figuring out ways ships. In the field of sexuality, this phenomenon to address them. is referred to as situational homosexuality. When these same residents are allowed heterosexual con- Access to partners tact, often they return to heterosexual behavior. Some time ago during a visit to our clinic, a Just like non-disabled gays, people with de- mother approached us regarding her 19-year- velopmental disabilities who are gay risk ridicule old son with Down syndrome. She was concerned and prejudice once they come out. A few years about his recent and developing interest (and ago I was asked by a county case worker to pro- from what I could gather it was mutual) in a girl vide safe-sex information to one of her clients- a Continued on page 10 9 Disability Solutions May /June 2001

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Continued from page 9 from his cognitive disabilities class at his school. about people with developmental disabilities are The mother came to us wanting some ideas on still prevalent. As a result, our children often view how she could “nip-it-in-the-bud” (the relation- finding and dating a “normal” person as a more ship) before it developed into something serious!! appealing and acceptable option. This story still haunts me for a number of rea- Privacy sons. Let’s face it, loneliness and isolation are At a sexuality conference a few years ago, I was common problems among people with disabili- having lunch with a wonderful group of sex edu- ties. Within the programs that I do, participants cators who specialized in working with people with developmental disabilities often share their who have developmental disabilities. One of my frustration over the difficulties in finding a friend, friends was sharing his story about how he rou- companion, or partner. Limited transportation, tinely challenged parents of children with spe- lack of privacy, fewer opportunities for socializa- cial needs to think about how they will handle tion, and often societal stereotypes and pejora- consensual sexual activity when the time comes. tive attitudes about people with disabilities and For the non-disabled, private locations for sexual sexuality make finding a partner, getting together activity are plentiful- a college dorm room, an and developing a relationship much more difficult. apartment, a tent. For people with disabilities The desire to have a meaningful relationship with a who rarely drive, and are often living at home partner is a need we all have. Becoming another ob- well into adulthood, finding a private place to be stacle for our children is unacceptable. Instead, affectionate is more challenging. we can facilitate this process by: I tell this story because I have been called to Š Ensuring our children are socially active par- “deal with” couples or clients who have been dis- ticularly in early and late adolescence (and covered displaying affection or participating in throughout life). Participation in clubs, hob- sexual activities in public places. After speaking bies, recreation and leisure activities increases with them it becomes apparent that group home their chances of finding meaningful compan- policy, staff and parental attitudes, etc. prevent ionship and developing friendships that could them from being together in private places that potentially result in long term relationships. would be more appropriate. We need to remem- Š Listening to what our children are telling us. ber that when limits or restrictions are placed Too often we ignore, subtly discourage, or on private sexual expression, sexual activity of- shatter hopes and opportunities for connect- ten moves into the public arena. ing with others because of issues we have as parents. Consent Š Continuing to teach and reinforce social skills One of the dilemmas frequently facing parents and that are needed as they arise. providers is balancing the need to both protect and Many parents experience discomfort when their support individuals with developmental disabilities teen or young adult expresses their desire to in their right to make sexual decisions. Often the key develop a sexual relationship with a non-disabled factor in determining this is whether the individual peer. As younger generations of children are has the capacity to consent to sexual activity. Fac- growing up in inclusive settings, this phenom- tors that alter or contribute to the confusion regard- enon will understandably become more preva- ing a person’s ability to legally give consent include: lent. We need to remember that people with de- Š a lack of information or knowledge about sexu- velopmental disabilities see the same role mod- ality such as boundaries concepts, information els as we do in the media and in life. Not since on how to prevent themselves from conse- Chris Burke’s television role in Life Goes On have quences of sexual activity, and there been models for young adults with Down Š the ability to make decisions voluntarily and free syndrome. Negative stereotypes and attitudes from coercion. 10 Volume 4, Issue 6 Disability Solutions

Building on the Foundation: The Growing Years

What topics are covered? Sexuality Education in Concepts and information taught within a pro- Schools and Community gram should include: Parts of the Body, Matu- ration and Body Changes, Personal Care (Hy- By the time your child approaches adolescence, giene, feminine care, medical exams, etc, Social schools should be providing learning opportuni- Etiquette (grooming, social skills), Relationships, ties that augment and reinforce learning and un- Exploitation Prevention, Dating/Relationship derstanding sexuality issues. However, here’s a Development, Sexual Expression within Relation- warning. Although our country has made ships, Pregnancy Prevention (Birth Control), Sexu- progress in accepting the fact that non-disabled ally Transmitted Diseases and their prevention, adolescents are sexual and therefore need quality Rights and Responsibilities of Sexual Behavior. sexuality education, when it comes to providing Who Teaches the Program? sexuality education for teens with developmental I have met teachers who are comfortable work- disabilities, we still have a long way to go. ing with people who have developmental disabili- Educating people with Down syndrome within ties but not at all comfortable with sexuality is- inclusive classrooms is occurring more frequently sues. This scenario often results in incomplete, than it has in the past. Sexuality education “problem-focused” programming (information within the regular curricula, however, looks dif- designed to fix a problem rather than cultivate ferent than the training typically provided for sexuality) that includes “safe” and non-contro- individuals with developmental disabilities. Some versial sexuality topics (i.e exploitation preven- benefits of involving your adolescent in program- tion, body parts). In other situations, sexuality ming specifically geared toward people with cog- educators can be skilled and comfortable teach- nitive disabilities include: ing sexuality topics, but have little or no experi- Š smaller groups of students, ence working with or teaching people with de- Š smaller amounts of information presented per velopmental disabilities. The consequence is pro- session, gramming that is too sophisticated and complex, Š improved content relevancy focusing on decreasing relevancy and comprehension for the common issues and problems, students. Involving a certified sexuality educa- Š use of specialized, more concrete teaching tor who has experience working with people who materials, have developmental disabilities is ideal. Š increased opportunities for repetition and reinforcement , and What values are inherent within the program? Š safer “practice” settings for reviewing and Usually when referring to values within curricula, applying skills among peers. it is in reference to universal values we all agree are important. Examples of these values include: Even if your child’s school offers instruction Š Sexuality is a natural and healthy part of who geared towards the needs of individuals with we are. cognitive disabilities, there can be wide variabil- Š All of us are sexual. ity in the quality of programming. Community Š Sexual activity comes with responsibilities. attitudes and beliefs, skill and comfort level of Š Exploiting or hurting others is wrong. the instructor, resource allocation (funding), and parental support are factors that typically affect How is learning evaluated? program quality. Here are some questions and Student learning associated with sexuality pro- background information that may be helpful as gramming can be evaluated through paper and you attempt to evaluate and advocate for com- pencil testing (labeling, selecting appropriate prehensive programming: Continued on page 12 11 Disability Solutions May /June 2001 Building on the Foundation: The Growing Years

Continued from page 11 responses, picture selection), board games, oral in dealing with sexuality issues and comfortable tests, or behavioral testing (role play, observa- working with an individual who has limited ver- tion of skills within contexts outside the class- bal abilities and/or cognitive limitations is often room, In situ assessment). a challenge. You may be able to get help by con- Critical times for programming within the tacting the following organizations. school setting include job-training programs. If Local Disability Organizations your child is transitioning from school to com- Most agencies supporting individuals with de- munity, sexuality education, in some form, velopmental disabilities (ARC, UCP) by now rec- should be a component of the curriculum. If your ognize their needs and rights related to sexual- child is no longer in school, advocate for sexual- ity. Often these agencies have compiled lists of ity programming within other contexts. Sheltered resources for counseling or are aware of emerg- workshops, disability agency job training programs, ing experts in this area. With increasing fre- clubs, or other groups your child belongs to can ef- quency, communities are offering support groups fectively integrate sexuality information into existing that address the unique needs of people with programs. Often the programs I am asked to do are cognitive disabilities. started by groups of parents or professionals who are simply listening and responding to the needs Planned Parenthood Organizations of individuals with disabilities. Although not all Planned Parenthood agencies around the country have staff who are trained When Sexuality Education Isn’t Enough or experienced in working with individuals with Participating in the best sexuality program developmental disabilities, more often than not, doesn’t guarantee sexual problems will be re- they have a good level of comfort addressing solved. Usually it’s a good beginning and first sexuality issues in general. Many times these step in helping people with disabilities gain a organizations are the first to initiate services for better understanding of who they are and how specialized populations. they appropriately interact with others. Some- AASECT Counselors and Therapists times, despite our best efforts, things go array. AASECT (American Association of Sex Educa- It’s important to remember that sexual problems tors, Counselors, and Therapists) is the only or- often carry extra baggage and discomfort result- ganization devoted to training and certification ing in escalated reactions from parents and oth- of professionals in order to promote sexual ers working with your child. Handling and re- health. AASECT Certified counselors or thera- solving problem behaviors will require collabo- pists have extensive training in all aspects of rative work and communication between all sexuality and are available in most states. Few, people supporting your child. Help and support however specialize in working with individuals from trained counselors or therapists who are with developmental disabilities. If you are fortu- trained in the therapeutic process of dealing with nate enough to have one of these resources in feelings may be necessary if the individual’s prob- your community, it’s likely the above agencies lem behavior is creating dysfunction or unpleas- know who they are and how they can be reached. ant feelings to surface. These feelings may sur- face as a result of normal development or past Conclusion traumatic experiences such as sexual abuse. A This two-part series was designed to identify a trained counselor can help the individual sort list of key concepts and issues that, when ad- through feelings and develop strategies for ad- dressed early in life, can provide a good founda- dressing the problem behavior. For many fami- tion for the development of healthy sexual atti- lies, finding a qualified counselor can be a diffi- tudes from which to build as your child matures. cult. Although most communities have access The concepts and issues identified in this series to counselors, finding someone who is trained are by no means comprehensive, but meant to

12 Volume 4, Issue 6 Disability Solutions

Building on the Foundation: The Growing Years

give you a good start towards the problems that References: we so often see after years of sexual repression Š Hingsburger, D. (1995) Just Say Know! Understand- and denial. ing and Reducing the Risk of Sexual Teaching all of the concepts listed may never Š Victimization of People with Developmental Disabili- happen for some families. For children with more ties. Eastman, Quebec, Canada: Diverse City Press. severe cognitive impairments there may be less Š Lumley, V. & Miltenberger, R. (1997). Sexual Abuse Prevention for Persons with Mental Retardation. emphasis on social skills and more time spent on American Journal of Mental Retardation, vol. 101, helping your child feel good about who they are. (5) p. 459-472. What’s most important is that you recognize your Š Melberg-Schweir, K. & Hingsburger, D. (2000). child has sexual and informational needs like Sexuality: Your Sons and Daughters with Intellec- everyone else. Good luck on your journey! tual Disabilities. Baltimore, Maryland: Paul H. Brookes Publishing Company. Š Nadel, L. & Rosenthal, D. (1995) Down Syndrome: Terri Couwenhoven, MS, is the mother of two daugh- Living and Learning in the Community. New York, ters, one of whom has Down syndrome. She is an New York: Wiley-Liss, Inc. AASECT certified sexuality education consultant and Clinic Coordinator for the Down Syndrome Clinic of Wisconsin.You can contact her by e-mail: [email protected] or by US Mail: TC Services, 209 N. Spring Street, Port Washington, WI 53074.

Sexualityresources Resources for resources Teaching & Learning

The following is a listing of my favorite resources with a Leader’s Guide (useful for parents as well) for teaching about sexuality. Most of these can supplemental activities that affirm the concepts be purchased through any major bookstore or above. Both the Guide and children’s book can at amazon.com. If not, the source where it can be purchased through Free Spirit Publishing at be purchased from is listed after the description. www.freespirit.com for about $30.00. Foundational Sexuality Concepts Today I Feel Silly & Other Moods That Make My Bellybuttons are Navels by Mark Schoen. Published Day by Jamie Lee Curtis. Published by Harpercollins by Promethius Books, 1990. ISBN: 087955857, $19.00. Juvenile Bookes, 1998. ISBN: 0060245603. $13.95. A story about two young children discovering A humorous book about feelings. A fun spin their body parts while bathing together. Useful diagram in the back allows children to change for helping children understand differences be- the look of the face based on feelings (sad, happy, tween boy and girl bodies and identifying cor- excited, cranky, angry). rect names for private body parts. Face Your Feelings, Published by Child’s Work/Child’s Just Because I Am: A Child’s Book About Play. www.childswork.com 1-800-962-1141. Affirmation by Lauren Murphy Payne. Published by A book and card deck set that help children un- Free Spirit Publishing, 1994. ISBN: 0915793601, $8.95 derstand the importance of expressing and un- (child’s book), $13.95 (instructor book). derstanding feelings. The book and card deck A beautiful yet simple book that encourages ap- show 52 pictures of children, teens, adults and preciation of uniqueness and includes empow- seniors expressing 12 basic feelings. Designed eringresources messages about the body, feelings, bound- forresources ages 4 and up. ary awareness, touch, and feeling safe. Comes 13 Disability Solutions May /June 2001

What’s the Big Secret: Talking About Sex with Girls It’s Perfectly Normal :Changing Bodies, Growing and Boys by Marc Brown and Laurie Krasny Brown, Up, Sex, and Sexual Health by Robie Harris. Ed.D. Published by Little Brown and Company, 2000. Published by Candlewick Press, 1996. ISBN: ISBN: 0316101834, $5.95. 1564021599, $10.99. A nice, easy-to-read story book for young chil- A comprehensive book that uses color illustra- dren that addresses how boys and girls are dif- tions to address puberty (male and female), re- ferent (come to find out the only way they are production, birth, sexual orientation, decision different is physically). The book addresses so- making, and staying healthy. cietal rules related to talking, looking, touching, What’s Happening to My Body: A Book For Boys and being touched and reproduction. by Lynda and Area Madaras. Published by Newmarket Puberty Resources for Pre-Adolescents Press, 2000. ISBN: 1557044430, $12.95. Changes in You by Peggy Siegel. Published by Family A workbook companion piece entitled My Body, Life Education Associates, P.O. Box 7466, Richmond, My Self for Boys can be purchased separately VA 23221. 804/262-0531. $10.45. and includes reinforcement games, checklists, and quizzes. A little busy, but can give parents The only book written specifically for girls and ideas for reinforcement activities. boys with cognitive disabilities, this book uses beautiful illustrations and straightforward lan- What’s Happening to My Body: A Book For Girls guage to explain the physical, emotional, and by Lynda and Area Madaras. Published by Newmarket social changes of puberty. Separate book for boys Press, 2000. ISBN: 1557044449, $12.95. and girls. A workbook companion piece entitled My Body, The Care and Keeping of You: A Body Book for My Self forGirls can be purchased separately and Girls by Valorie Lee Schaefer. Published by American includes reinforcement games, checklists, and Girl. ISBN: 1562476661, $9.95. www.american quizzes. A little busy, but can give parents ideas girlstore.com. for reinforcement activities. This American Girl “head-to-toe” advice book Hygiene and Grooming addresses female puberty changes, hygiene is- First Impressions Can Make a Difference. James sues, self esteem, fitness, sleep and emotions. Stanfield Publishing Company. www.stanfield.com or Lots of color pictures and easier text makes it call for catalog 1-800-421-6543. Approximately $189. for fun reading for girls with lower reading levels. each video series. Includes empowering messages about the body. A four-module video series that addresses hy- The Period Book: Everything You Don’t Want to giene, grooming, dress, and attitude using humor Ask but Need to Know by Karen & Jennifer Gravelle. and exaggeration. Modules are sold separately. Published by Walker and Company, 1996. ISBN: Comprehensive Sexuality Resources for 0802774784, $8.95. Parents and/or Teachers A more advanced book for females that covers “changes you can see” and “changes you can’t Being Sexual: An Illustrated Series on Sexuality see” but also includes information about tam- and Relationships by Susan Ludwig and David pon use, first pelvic exams, and how to handle Hingsburger. SIECCAN 850 Coxwell Avenue East York, common problems. Available through Ontario M4C 5R1. www.newmooncatalog.com . This series, designed for teens and adults, in- cludes information on personal feelings, indi- What’s Happening to Me?: An Illustrated Guide to vidual rights and societal expectations related Puberty by Peter Mayle. Published by Lyle Stuart, to a variety of issues. Key concepts and infor- 1981. ISBN: 081803128, $9.95. mation is translated into Blissymbols. A humorous approach to male and female pu- berty. Mostly animated drawings with a few re- alisticresources ones thrown in. resources 14 Volume 4, Issue 6 Disability Solutions

Sexuality: Your Sons and Daughters with Intellectual Life Horizons I & II by Winifred Kempton. Published Disabilities by Karin Melberg Schwier and Dave by James Stanfield Company. www.stanfield.com. 800- Hingsburger. Published by Brookes Publishing Company, 330-5851. Approximately $700.00 for a set. 2000. ISBN: 1557664285, $24.95. One of the most comprehensive slide series and An excellent resource addressing sexual devel- script for teaching about sexuality. Part I fo- opment issues across the life cycle from birth to cuses on the physiological and emotional aspects adulthood. Parents, and their sons and daugh- of being male or female. Part II emphasizes the ters with developmental disabilities share helpful moral, social and legal aspects of sexuality. stories for parenting sexually healthy children. Exploitation Prevention Many portions of the book speak specifically to people with Down syndrome and their parents. Just Say Know!: Understanding and Reducing the Risk of Sexual Victimization of People With Shared Feelings: A Parents Guide To Sexuality Developmental Disabilities by David Hingsburger. Education for Children, Adolescents, and Adults Published by Diverse City Press, 1995. ISBN: Who Have a Mental Handicap by Diane Maksym. 1896230008, $15.00. www.diversecity.com. Published by Rohert Inst Kinsman, Inc., 1996. ISBN: 092012918, $14.00. A wonderful resource for parents or profession- als, this book provides straight forward informa- A wonderful guide to help parents of children tion on how we contribute to making people with with an intellectual disability discuss sexuality developmental disabilities more vulnerable to with their children. Includes information on exploitation, signs and symptoms of abuse, and teaching social skills, talking to children about strategies for empowering people with develop- bodies and feelings, decisions, STDs and exploi- mental disabilities to protect themselves. tation prevention. Lots of personal stories about families and personal experiences addressing Protecting the Gift: Keeping Children and tough issues. Can be ordered through the Roeher Teenagers Safe (and Parents Sane) by Gavin De Institute at www.indie.ca/roeher/catalogue. Becker. Published by Dell Books, 2000. ISBN: This book is listed under the Education and 0440509009, $11.95. Learning category. A great book for parents who want to do all they Special Education: Secondary Family Life and can to empower their children to be safe. Al- Sexual Health (FLASH) by Jane Stangle. Family though the book does not specifically speak to Planning Publications, Seattle-King County Department children with developmental disabilities, some of Public Health. Suite 300 110 Prefontaine Avenue of the information is easily transferable. Ad- South, Seattle, WA 98104, 206-296-4672. dresses intuition, safety rules, and includes a section that specfically addresses children with A great curriculum that can provide lessons on autism. teaching relationships, public and private, rela- tionships, communication, puberty, feelings, ex- No-Go-Tell! Published by James Stanfield Company. ploitation prevention and more. www.stanfield.com. 800-330-5851. Approximately $399.00 for a set. I Openers: Parents Ask Questions About Sexuality and Children with Developmental Disabilities by A program designed for children with special David Hingsburger. Mariah Management. $15.00. 1- needs ages 3-7 by experts who work with chil- 800-856-5007 dren with disabilities. The package includes pic- tures, anatomically correct dolls, and lessons. A book full of common questions answered by one of the most well known and respected indi- Masturbation viduals in the field of sexuality and disability. Hand Made Love: A Guide for Teaching About Male Masturbation by David Hingsburger. Published by Diverse City Press. www.diverse-city.com. $45.00. A video and teaching program for adult males with developmental disabilities. A how-to video resources thatresources models safe and appropriate masturbation. 15 Disability Solutions May /June 2001

Finger Tips: Teaching Women with Disabilities teaches relationship-building, social distance About Masturbation Through Understanding and and exploitation prevention skills. Designed to Video by David Hingsburger and Sandra Haar. be used with middle school through adulthood. Published by Diverse City Press. www.diverse- Relationship Series by National Institute for People city.com. $45.00. with Disabilities. Published by Young Adult Institute A video and teaching program for adult females (YAI) at (212) 273-6517. with developmental disabilities. A how-to video A comprehensive videotape series that includes that models safe and appropriate masturbation. a friendship series(differences between strangers, Puberty acquaintances, and friends, becoming acquaintan- Before She Gets Her Period: Talking with Your ces or friends, and being a friend), boyfriend/girl- Daughter About Menstruation by Jessica B. Gillooly. friend series ( starting a special relationship, build- Published by Perspective Publishing. ISBN: ing a relationship I like, and having a good rela- 0962203696, $13.95. www.family-help.com. tionship), and sexuality series (enjoying your sexual life, working out problems in relation- A great resource for mothers or fathers who want ships, and sexual acts that are against the law). to brush up on facts as they prepare for discus- sions about menstruation. Includes some of the Social Skills most current information available and empha- Stacking The Deck: A Social Skills Game For sizes communication with discussion starter Adults with Developmental Disabilities by Richard activities. M. Foxx and Martin J. McMorrow. Beginnings : A Parent/Child Sexuality Program For www.researchpress.com. $19.95. Families With Children Who Have Developmental A card game that creates plenty of real-life situ- Disabilities by Terri Couwenhoven. Published by ations to practice and reinforce learning. The Wisconsin Council on Developmental Disabilities, game addresses skill areas in compliments, so- 1991. www.wcdd.org $3.00. cial interaction, politeness, criticism, and social Ideal for professionals who are interested in set- confrontation in the contexts of Social/Vocational, ting up parent/child puberty workshops. Social/Sexual, and so on. Changes in You by Peggy Siegel. Published by James Mind Your Manners. Published by James Stanfield Stanfield Company. www.stanfield.com. Approximately Company. www.stanfield.com. $399.00. $299.00. A six-part video series that introduces middle Laminated pictures with scripts on the back school through adults to proper social behavior. that can be used for teaching about the physi- Topics include: why manners are important, cal and emotional changes of male and female manners at home, at the table, in school, in pub- puberty. Comes with Teacher’s Guide and lic and when conversing with others. Changes in You books. Delicate Threads by Debbie Staub. Published by Janet’s Got Her Period. Published by James Stanfield Woodbine House Publishing, 1998. ISBN: Company. www.stanfield.com. Approximately $399.00. 0933149905, $16.95. This training manual provides extensive back- By comparing observations to current theories ground information, a video and instructional of childhood friendship, the Debbie Staub helps curriculum for teaching about menstrual hy- us to understand the value of relationships be- giene with young women with severe develop- tween a “typical” child and one with moderate to mental disabilities. severe disabilities. She also provides practical Relationships suggestions to help teachers and parents foster and maintain friendships in inclusive settings. Circles by Leslie Walker-Hirsch. Published by This thought-provoking book provides important, James Stanfield Company. www.stanfield.com. real-life evidence about the merits of inclusion Approximately $599.00. and can help guide educators and parents of all A popularresources relationships training program that childrenresources into the future. 16 83 The National Fragile X Foundation’s Adolescent and Adult Project

Issues In Sexuality

Sexuality Resources

ORGANIZATIONS/WEBSITES The Arc of the United States 1010 Wayne Avenue, Suite 650 Silver Spring, MD 20910 800-433-5255 www.thearc.org

National Dissemination Center for Children with Disabilities (NICHCY) PO Box 1492 Washington, DC 20013 800-695-0285 www.nichcy.org

Planned Parenthood Federation of America 810 Seventh Avenue New York, NY 10019 800-230-7526 www.plannedparenthood.org

Sexuality Information and Education Council of the United States (SIECUS) 130 West 42nd Street, Suite 350 New York, NY 10036 212-819-9770 www.siecus.org

Disability Solutions: Sexuality Education: Building a Foundation for Healthy Attitudes (Two-Part Series) www.disabilitysolutions.org/pdf/4-5.pdf www.disabilitysolutions.org/pdf/4-6.pdf

BOOKS Braden, Marcia L. Fragile: Handle With Care, Understanding Fragile X Syndrome, 2000. Contact The National Fragile X Foundation, 800-688-8765.

Hagerman, Randi Jenssen, MD, and Paul J. Hagerman, MD, PhD, Fragile X Syndrome: Diagnosis, Treatment, and Research. Third Ed. Baltimore: The Johns Hopkins University Press, 2002.

Schwier, Karin Melberg & Dave Hingsburger, MEd, Sexuality: Your Sons and Daughters with Intellectual Disabilities. Paul H. Brookes Publishing Co. Inc., Baltimore, MD, 2000.