Reluctant Book Review Because My Silence Will NOT Protect You!

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.

Not Just One, But Two Blog Carnivals are UP

You read that right the Disibility Blog Carnival on Identity is being hosted at Astrid's Journal.

AND!!!

The TherExtra Blog Carnival on Music hosted by Barbara is also posted.

Lots of good reading in my near future... won't you join me?

I Hear Quacking

You may have heard this saying before: If something walks like a duck and quacks like a duck, it's a duck.

I really like it. To me it's about cutting through the nonsense that people spew to distract you from their bad behavior... or to get you to sanction it... or something...

I have written before about the phrase "trust me."

Well, this week I have heard two more to add to my list of warning phrases.

The first was said by a teacher about a child whose needs are not being met in his classroom:

"But we LOVE Bobbie!"

Quack! (Then do what he needs!!)

The second?

"This isn't political."

This was said...

 in NY.

By.  A.  Politician.

I know, I couldn't stop laughing either! Quack, quack, QUACK!!!!

I don't know the ins and outs of that situation, but it seems that one net effect will be removing a large group of people with disabilities from a person-centered model of care and putting them into the medical/agency model.

The only good thing is that these people have been empowered by years of self-determination. They may be in a position to push  these agencies to drastically improve their services--I hope they will accept nothing less!

Picture by Alexander Kinks from here.

"I Do Believe, I Do Believe, I Do, I Do, I Do...."

I told you last year that after a school career that was always to some degree inclusive (at least half the day), we moved my daughter to a special education program at a special education school... This was a huge change. It was a big change for my daughter and it was a seismic shift for me!

The good news is it is going great! Jenn LOVES her school. She loves her teachers, she loves her friends, she loves everything except math (which she didn't like before either!) She loves going out on the town for social things and for work experiences. She is a cheerleader and she's active in everything they have going.

She is more independent at so many things.  She self-advocates much, much more. And she is making academic progress. It has been a very good move.

And yet...

Sometimes I feel pretty guilty about changing... and sometimes I feel completely misunderstood. One friend who has never believed in inclusion shocked me by saying "Terri used to believe in inclusion, but now she's seen the light!"

GRRRRR!! And all I could do was stammer and stutter ineffectually finally coming up with with, "Nu-unh!"

(So there!)

Can I have a do-over? Please?

First of all, more than I have ever believed in inclusion, I believe in choice and individualization.


Secondly, I absolutely do still believe in inclusion. I have always believed that people are healthier, happier and safer when they belong, when they are known and cared about in their community. And how can one become known or cared about without being present--at the very least, visible--in that community?

This hasn't changed. Honest.

Inclusion is a process, not a religion that one can be excommunicated from (exclusion from inclusion, really??) We believe Jenn is becoming more 'includable' because of the education she is currently receiving. That's why we chose it. We absolutely will have to work harder for relationships in our community to happen for her, and we know this.

What I truly wish is that I could name and quantify the very positive things that are happening at this new school so they could be applied in other places....

Here's what I have noticed so far:

• The prevailing culture seems to be about growing the kids' world. It is much easier to build a smaller and smaller world for kids like Jenn, but that is NOT what we want. They seem to start with what she can do and then ask how could she do more. It is much more common to hear things like "she does well in small groups so let's give her lots of small group stuff."  Here they seem to say "she does well in small groups, how can we enlarge that?"
• They work hard at having a safe environment, but they are not obsessed with protection (protection is the consummate small world maker--it's also an illusion, but that's a post for another day!) They also work hard on teaching strategizing, self-advocacy and resilience. It's a good balance, I think.
• They aren't afraid of the kids' emotions. When I toured the school the principal told me "Drama is where social skills are learned!" This is the absolute truth, if you think about it! The idea of sharing is easy, sharing when you REALLY don't want to is what really matters!  Values/principles become real only through being challenged. I have to say that at our district school there were no real challenges--if Jenn had taken someone's seat or something the adults would intervene, but the kids would pretty much say it was ok... She's seen as a more of member here, I think, so she's fair game!
• They practice differentiated learning and have not yet asked me, "But why does she need to learn that..." Some kids there are much stronger academically than Jenn, and some are not and the expectation is that they will all participate in every lesson I have seen.
• They seem to take a facilitation approach instead of either 'letting her be there' or 'taking care of her.'

I do know the place isn't perfect. And Jenn has definitely experienced many of these things before...  I am just trying to analyze what I see. What are the ingredients that make a program work for you or your child?

Hello, I 'm Baaaaaack!

Hi, I'm home. What's for dinner?

My goodness it has been a long time since my last post.... sorry about that. The summer was fun... and hectic. Now we have two kids in college and to celebrate I picked up a second job. It's just a few hours, and it's for an advocacy agency helping with a writing project. All this means that my time and my writing mojo were all being absorbed for a while.

It seems now that I am adjusting to my new schedule because I want to read again and I am having ideas I want to explore and express beyond my project. This makes me happy--I enjoy the project, but I like doing my own stuff too.

I hope you all are well. I have missed you!