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Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality

A Guide for Parents and Professionals
Terri Couwenhoven, M.S.


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isbn# 978-1-890627-33-1
8 1/2" x 11"
332 pages
Illustrations & Photographs

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"This book is both overwhelming and excellent. It is overwhelming because it becomes clear early on that ABSOLUTELY EVERYTHING you have ever done, taught or modelled (on purpose or not) has an effect on your child's understanding of these materials! It also makes you realize how important correct information about the body, sexuality and relationships is to having a happy, healthy life.

The book is excellent because each chapter breaks down an important topic into manageable chunks. Each chapter has a combination of background information, a number of concepts to think about and teach, teaching strategies, activity suggestions and stories from the author about people's experiences. There are chapters on the body itself that include teaching names for body parts and teaching hygiene, chapters on puberty, developing relationship skills, privacy, dating and more. And there are helpful hand-outs in the appendix that can be copied to support many of the chapters.

I like the way the book addresses concrete things like how to trouble-shoot issues with hygiene AND more abstract concepts like 'how to tell if someone is not interested in you.' The book talks about how to have a healthy relationship and how to avoid and handle exploitave situations. It doesn't minimize or avoid the challenge or the necessity of teaching any of this information. The author has a daughter with Down syndrome herself and years of experience teaching sexuality and her understanding really shows."
-Terri Abrams, author of Barriers, Bridges and Books blog
Read the entire review here

"This comprehensive book celebrates sexuality and the joys of all types of social relationships while acknowledging that parents have an overwhelming drive to protect their children from embarrassment, hurt, and exploitation. The author combines her experience as a sexuality educator with her experience as the mother of two teenage girls--one of whom has Down syndrome--to present comprehensive information in an engaging and understandable manner. This sets the stage for the many concrete, step-by-step teaching/learning activities provided for parents to do with their children.

There are fourteen chapters and two sets of reproducible appendices--one set for teaching children about the body and the other set for teaching related knowledge and skills (such as planning a date). The order of the chapters is related to the sequence in which children will tend to become interested in and learn about their bodies, social relationships and sexuality. We are reminded that sexuality is part of development right from birth. The appendices are followed by a resource section with helpful websites, organizations, and book and video lists. Although this is a US publication, Canadian resources are listed and described.

Before I had even finished reading the book, I was sharing my new knowledge with parent and teachers of children with cognitive disabilities. I strongly recommend it for occupational therapists working with children or adults with cognitive disabilities."
-Canadian Journal Of Occupational Therapy, April 2009, Volume 76 number 2

"Terri Couwenhoven is a certified sexuality educator who works with individuals with intellectual disabilities and is a mom to two daughters, one with with Down syndrome.

With an emphasis on helping children develop healthy sexuality, Ms. Couwenhoven has written a wonderful guide that not only explores the myths about sexuality and people with disabilities but also provides gentle prompts for teaching a child about his or her body and the changes to expect. There’s a chapter devoted to helping parents identify why they have a difficult time teaching their child about sexuality, which provides guidelines for how much information to provide at specific times. Other chapters include excellent activities for teaching children about social skills and friendships, dating, healthy relationships and safety, accompanied by visuals parents can use to teach their children about their bodies. And, don’t forget to read through the resource section with excellent supplementary materials for parents, children, teens, self-advocates and professionals."
-Newsline, Spring 2008, Federation for Children with Special Needs

"At the NDSC convention in Kansas City, I attended the sharing session for mothers of 9-11 year-olds. As we shared questions and concerns about social skills and puberty, several mothers enthusiastically referred to lessons they had learned at Terri Couwenhoven's workshop, earlier that day. I eagerly awaited this forthcoming book and I was not disappointed.

There's a quote in the book about how one mother taught her son that 'sex' was between his legs, but 'sexuality' was between his ears. In addition to information that you might expect about the body and physical changes during puberty, the book also covers teaching about privacy, social skills for healthy relationships, friendships and dating and social emotional development.

The book is full of stories and real-life examples, which make the book easy-to-read. There's something that virtually everyone can relate to. I particularly appreciated the 'Key Teaching Messages,' which highlighted the two or three key points in simple language that you'd want to make sure are clear. I also really liked the 'Teaching Activities' scattered throughout the book that offer activities or games that you can use to teach about things such as 'public or private behaviors.' Couwenhoven also provides several instance of 'troubleshooting'--explaining that, as a sexuality educator, she typically hears from families when there is a problem. Families currently facing such problems will appreciate Couwenhoven's practical solutions, while others will appreciate learning what to do try and prevent them."
-Down Syndrome News (Nat'l Down Syndrome Congress)

"The author of this book is the mother of a teenager with Down syndrome and is also an educator on sexuality. Ms. Couwenhoven’s unique background enables her to address sometimes challenging issues that children and adults with Down syndrome experience. The book contains practical ideas for teaching children with Down syndrome about their bodies, puberty and sexuality, giving parents the confidence to speak comfortably about these sometimes difficult topics. This book has a 'parent' feel--it is written in a non-clinical, easy to read style. It is recommended for parents and professionals who have or work with children and adults with Down syndrome.

NADS members may have heard Terri present at NADS conferences, and she has also presented at many national conventions. We have received very positive feedback from several parents who have read this book--described by one as a 'must read.'"
-NADS News, November/December 2007 (National Association for Down Syndrome)

"Although intended for parents and educators of children with Down Syndrome, Teaching Children with Down Syndrome about their Bodies, Boundaries, and Sexuality (Woodbine House, October 2007) is a wonderful resource for parents of all exceptional children who wish to explore such important issues as abuse prevention, respecting personal space, understanding privacy norms, showing appropriate levels of affection and explaining sexual relationships. Written by Terri Couwenhoven, a certified sexual educator and mother of a child with Down syndrome, the book blends factual information and practical ideas in an easy-to-read, non-clinical style. Illustrations of body parts and their functions and multiple appendices containing valuable teaching materials compliment this recommended reading for parents and educators interested in actively preparing their children for the period Beyond the Cocoon."
-Exceptional Family, Winter 2007

"As a certified sex educator and parent to a daughter with Down syndrome, Terri Couwenhoven has both professional expertise and personal experience related to this complex and sensitive topic. She provides practical information about sexual development and presents it with the understanding of one who has "been there" as a parent.

From privacy to puberty, masturbation to marriage, family planning to fallopian tubes, and hygiene to healthy intimacy, this guide addresses issues that other books gloss over or avoid. Using straightforward language and uncomplicated diagrams, it debunks the myths surrounding sex and people with disabilities, and offers direct instruction strategies to help children with intellectual disabilities take care of their bodies and understand their sexual selves. There are also useful chapters on exploitation prevention, and sex education in schools.

At first glance, worksheets and teacher terminology make this book seem more for teachers than parents. However, the information it contains will be valuable to parents who utilize "teachable moments" to interact naturally with children, as Couwenhoven suggests. Couwenhoven’s style is effective and easy to follow. She peppers her highly readable text with key points. Marked by easy-to-spot icons, including short pieces she calls Parental Pauses. These thought-provoking questions and comments help parents gain insight into their own views regarding sexuality.

Although the title suggests this book is intended for those caring for children with Down syndrome, its content is applicable to a wide range of individuals with cognitive differences. In fact, this guide would be useful for parents of any child, with or without disabilities, wanting to encourage a healthy sex positive attitude."
-CAPHIS Consumer Connections

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