Still Waters

There’s an old saying that “still waters run deep.”  Being non-verbal, Zach’s “waters” are very still.  But I know there is a lot going on inside him.

Webster’s Dictionary lists one of the meanings of the word “dumb” as “lacking the ability to speak.”  They also note that this is often an offensive term.  I completely agree.  I think this usage of the word should be abandoned.  While Zach is currently lacking the ability to speak, he is most definitely NOT dumb.

We mistakenly assume that since a person cannot express their thoughts they must not have them.  Here’s a little excerpt from a blog I saw that demonstrates once again that this idea is false. 

A year and a half later, Hannah sits with her tutor at a small computer desk in her suburban home outside New York City. Facilitated communication is controversial (critics complain that it’s often the facilitator who is really communicating), but it has clearly turned Hannah’s life around. Since her breakthrough, she no longer spends much of her day watching Sesame Street and Blue’s Clues. Instead, she is working her way through high school biology, algebra and ancient history. “It became obvious fairly quickly that she already knew a lot besides how to read,” says her tutor, Tonette Jacob.

During the silent years, it seems, Hannah was soaking up vast storehouses of information. The girl without language had an extensive vocabulary, a sense of humor and some unusual gifts. One day, when Jacob presented her with a page of 30 or so math problems, Hannah took one look, then typed all 30 answers. Stunned, Jacob asked, “Do you have a photographic memory?” Hannah typed “Yes.”

http://wecareautism.wordpress.com/2012/12/08/inside-the-autistic-mind/

Before I am corrected by Sheldon Cooper I will acknowledge the semantic error.  She does not have a “photographic memory” but an eidetic memory.

This story illustrates what I know to be true of Zach also, that he is “soaking up vast storehouses of information.”  He doesn’t seem to pay attention to what is going on around him and then, all of a sudden, he begins clearing his dishes off the dinner table.  Unfortunately, he initially cleared them into the trash.  But with a little redirection he now very dutifully takes his dishes to the sink.

He also used to leave his empty water bottles just lying around.  Then, quite unexpectedly, he started throwing them away.  But there might be a current of sibling rivalry motivating this behavior.  Its genesis coincided with his brother’s push to recycle.  The recycling messages on PBS worked on Micah.  He has gotten excited about it so we have given him the job of collecting all the bottles for recycling.  This has led to the Bottle Wars as Zach goes to throw his empty (and sometimes not so empty) in the trash can and Micah is horrified and tries to rescue it to put in the recycling bin.

Just like Hannah, Zach loves Sesame Street and Blue’s Clues as well as many others.  He has quite a collection of DVD’s we have accumulated over the years.  And he seems to have them all catalogued in his brain.  He will look through the DVD’s and then go find the picture (PEC, Picture Exchange Communication) of the show he is looking for and give it to me.  Sure enough, the one he wants is not in the pile.  It is usually one that got so old and scratched that it no longer played and we got rid of it.  But Zach still remembers it and can recall it out of nowhere.  Still waters, indeed.

The Genius of John Franklin Stephens and My Son

In the wake of Ann Coulter’s poor choice of words and John Franklin Stephens’ excellent response to her, I thought I would weigh in with what Zach has taught me about the “r word.”

Like Coulter, growing up I had no connection to the special needs community and thought it harmless and trivial to invoke the word.  Then my boys were diagnosed.  All of a sudden the word hits close to home.  The sound of those syllables stings the ears.  The word magnifies and crowds out everything around it, completely cancelling any other thoughts or ideas that the speaker may have been trying to get across.  It invokes a silent rage within.  My mind is a whirl of thoughts:  How should I respond to this?  Do I just try to ignore it?  Do I say something?  What’s the best thing to say?  How can I express the pain this word causes?  Do I really want to get into this discussion/fight right now?  Will it really do any good?  In the end I usually say nothing.  A day or so later a great comeback hits me.  That’s what I should have said as I play back the encounter and gain a small measure of satisfaction in finally formulating a thought.  But it’s too late, I failed in the moment to stand up for my son and I failed to enlighten the speaker about the destruction of the incendiary word he so naively (I hope) employed.

It has given me an understanding of what the “n word” is like to African Americans.  It always confused me as to why the word seemed to be used rather casually by members of the community but was an inexcusable attack when found on the lips of someone with lighter skin.  Shouldn’t the word have been banished altogether?  But now I get it.  Being a part of the group affords an understanding of the word’s power.  And those in the group are allowed to use it because they also have an identity within the community.  When someone from the outside says it, it is a whole different circumstance.

We refused the IQ test the school wanted to do on Zach.  We knew what the result would be.  We also knew that the test result would not make any difference in the therapy Zach needed.  So we refused it because we didn’t want the “r” label.

We also knew that the test was incapable of measuring what Zach actually knows.  It would be like me trying to take a history test in Chinese.  I would fail miserably because I not only don’t know the language, but the historical facts that the test would consider important would undoubtedly be focused on the East and my education has been decidedly western and European.  I would utterly fail, but it would be no indication of what I really know.

Zach is non-verbal so it is difficult to determine just what he receives and processes.  He is also uninterested in most toys and other objects that one might use to gain attention for administering the test.

But I know there is a lot inside Zach.  He is incredibly adept at navigating through the screens and menus of his iPad to find just what he wants.  He knows what is expected of him when we say it is bath time or bed time (not that he always does it, just like most 8 year-olds, I think).  After one visit to the chiropractor he knew exactly what he was to do the second time.  Slowly we are discovering more and more of what Zach thinks, feels, and knows.  And it hurts when someone cavalierly dismisses him with a word that doesn’t even begin to describe who he is.

I think this is an aspect of what Stephens so eloquently expressed.  Thank you, John, for enlightening us all.