I admit I am nervous about writing this post. I know that this is a topic that makes a lot of people uncomfortable. And I know the spam this post will draw is bound to upset me... But this is a topic that is just too important to avoid.
The Book: Teaching Children with Down Syndrome about Their Bodies, Boundaries and Sexuality: A Guide for Parents and Professionals by Terri Couwenhoven, MS.
Yes, I am going there!
Safe and appropriate knowledge and behaviors regarding our bodies and our sexuality are necessary for anyone to be successful and happy in this world. Yet a number of factors often work together to deny this essential information from being successfully taught to people with Down syndrome.
Many people believe that people with cognitive disabilities are eternal children therefore teaching appropriate boundaries, etc doesn't matter... others believe that information about sexuality and relationships is just too complex for someone with Down syndrome to learn. Then there are myths like the one that people with Down syndrome can't be taught safe boundaries because something in them makes them hug (ugh!!!)
That's right, it's a myth.
There are also circumstances related to disability that create what the author calls 'altered scripts.' For example, your non-disabled children learn about privacy because once they become independent, adults no longer go with them into the bathroom, for example. A child that needs assistance with hygiene tasks longer, or always, does not learn about privacy the same way or in the same timeframe as other children.
And, let's face it, it can be really uncomfortable to read about the particulars about things like intercourse in relation to our children, and terrifically difficult to think about teaching these and the more abstract sexuality concepts to someone who is a more concrete thinker or who needs a lot of support to learn.
But none of this makes avoiding sexuality education acceptable.
A lack of correct information--or any information at all--about how their bodies work or how to take care of themselves, how to seek attention and how or when not to, and how to say 'no' can have terrible consequences. People who do not learn to appropriate behaviors and boundaries can end up completely isolated, can be negatively labelled, abused or can even be arrested. This is tragic and largely preventable.
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.
In one respect I think that every parent of a child with Down syndrome would benefit from this book. I think parents of younger children would benefit from having a big-picture view of where seemingly little things like lack of privacy and indiscriminate hugging can lead and some tips for addressing these things early.... In all honesty though, if this book had been available when my daughter was younger it would have sat unopened on my shelf. So much of the book is geared toward older children--and so many of the topics are things that NO parent considers very deeply for their small children that it would have remained on my 'manana mountain' for a long time. (I do think that parents of younger kids could use an introductory level book to start them on the right road though. And if the author writes one I want you all to remember that it was my idea!)
I think that by the time your child is 8-10 years old this book is extremely helpful and pertinent. That will seem early to some, but as Ms. Couwenhoven says, "Puberty happens in all people, whether we are ready or not!" Better to be ready, I say!
By the same token, I don't think it is ever too late to start to use some of the information in this book. Life is a process and better understanding of self and relationships would enhance anyone's life at any time. Parents and professionals working with teens will find this book an ideal resource, and those working with adults will find lots of helpful information as well.
Read author Terri Couwenhoven's Top 10 Questions on Down Syndrome and Sexuality.
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