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.

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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.

My Son Linus

Zach shares some characteristics with Linus Van Pelt from the Peanuts comic.  Just as Linus has his signature blanket that he cannot be without, Zach has a certain green blanket he has been attached to for years.  That blanket has been chewed on, pulled on, and pee-ed on.  It has been dragged, ripped, wadded, and wrapped.  It is faded, frayed, and falling apart.  But Zach still loves it and won’t part with it.

Linus is well known for sucking his thumb.  Zach, too, still partakes of the opposable digit.  And just as Linus often sits sucking his thumb and clutching that beloved blanket, Zach can frequently be seen in a similar pose.

And then there’s Linus and the ladies.  Well, really just the one.  Charlie Brown’s little sister, Sally, is enamored with Linus, but he is at best indifferent to her advances.  Even though he adamantly refuses the “Sweet Baboo” nickname she has given him, he is quite willing for her to join him in his interest, namely waiting for the Great Pumpkin on Halloween night.

Likewise, Zach has charmed nearly every teacher, therapist, or para-professional that has worked with him.  All the ladies love him.  But he is basically indifferent toward them.  That is until he sees that they might be useful in attaining something he desires.  He’ll take anyone’s hand who could potentially walk him out the door.  Or he’ll offer his cheek for a kiss just to move things along.

As I think of the similarities, I am hopeful for one more.  In the TV classic, A Charlie Brown Christmas, Linus proves to be the only character that understands the true meaning of Christmas.  He very eloquently quotes from the Gospel of Luke to explain the holiday to Charlie Brown.  I hope Zach will one day be able to do the same.

But even if he doesn’t vocalize it, I pray that he comprehends it.  His brother, Micah, gives me hope in that direction.  He used to not be able to communicate what he understood.  Just recently we asked him about a picture from a few years ago where he and Zach stood in front of a life size nativity display completely built out of Legos.  He very precisely told us that it was “a scene representing the birth of Jesus.”  I was very proud to hear that he knew this.  I pray Zach knows it, too.

I Feel Sorry for Muggles

It was an awkward silence.  My mind raced to find something appropriate to say.  I need to be supportive and upbeat without belittling the enormity of their situation.  But what could I say?  I have no personal experience from which to draw.  The awkward pause continued.

The conversation had started with this young couple with all the standard pleasantries.  Where are you from?  What brings you to town?  What kind of work do you do?  Then it inevitably turned to talk of the family and their little girl.  Through the course of the discussion it became apparent.  I’m no doctor and I haven’t been trained as a therapist, but it was glaringly obvious from their descriptions and my experience in the autism community.

Their precious little daughter was…neuro-typical.

Everybody talks about how quickly children grow up.  But their child was surely destined to zoom into hyper-speed in short order.  I thought of all the developmental milestones that would whiz by them without their even knowing they existed.  They would be like other parents I have known, totally oblivious to the incomprehensible miracles happening in their child day by day.

“Did you see what he just did?”  I said excitedly to one dad.  “He was holding his sippy cup in his right hand and he crossed the midline with his left to pick up his toy!”  The dad shrugged his shoulders and turned back to the game.

“That was impressive,” I remarked to a mom.  “She completely understood and carried through with the 3 step instruction you just gave her.”  The mom looked back at me blankly.

Parents of typically developing kids just have no idea what they are missing.  They haven’t a clue how amazing it is for little eyes to take in the busy scene in a store, pick out an interesting object, desire to share their find with another person, and point that person in the right direction with an extended finger.  They have no concept of the wonderful complexity of motor planning required for a climb up onto the back of the sofa.  They have no idea of all the intricate processes that kick into gear to receive a spoken word, evaluate what was said, formulate an appropriate response, translate that desire into intelligible language, and vocalize it in a socially acceptable format.

For some children the milestones just click by at an ever increasing rate.  And some parents don’t even know what they’re missing.  I feel sorry for parents who miss their child’s astounding and yet daily achievements.

Zach’s Favorite Things

In the spirit of Thanksgiving, here is a list of some of Zach’s favorite things for which he is thankful.  Be sure to read this with your best Julie Andrews’ voice.

Waffles and Cheerios, Mandarin oranges and chicken,
Anything, everything that is worth lickin’,
McDonald’s fries and White Castle’s rings,
These are a few of Zach’s favorite things.

Replaying videos in rapid succession,
Keeping Mom guessing his latest obsession,
Trees into which George of the Jungle will swing,
These are a few of Zach’s favorite things.

Sandals in winter and mud squished through toeses,
Taking the time to smell all the roses,
Cool autumn breezes and playgrounds with swings,
These are a few of Zach’s favorite things.

When the bills come,
When the news stings,
When I’m feeling sad,
There is my boy with his favorite things,
And then I don’t feel so bad.

Bath time with splishes and splashes and bubbles,
Bed time with brother and tickles and snuggles,
Chicka Chicka Boom Boom but don’t let Dad sing,
These are a few of Zach’s favorite things.

Riding on horses and blowing raspberries,
Spinning and bouncing and being all merry,
Checking the bags for what Mommy might bring,
These are a few of Zach’s favorite things.

TV and video and iPad with apps,
Sitting just a little while on Mommy’s lap,
Staying up late and yummy cakes that Zing,
These are a few of Zach’s favorite things.

When the bills come,
When the news stings,
When I’m feeling sad,
There is my boy with his favorite things,
And then I don’t feel so bad.

Mid Life Crisis

The election got me depressed.  Not the results, that is another issue.  What depressed me was seeing all the candidates that were younger than me being elected to office.  I can remember when the people we voted for were old.  Now I believe a good number of them are younger than me.  And it’s only going to get worse.

It’s just kind of depressing when I see people achieving high levels in their chosen profession at a young age because the immediate comparison jumps to my mind.  What have I done?  As I watch and root for professional athletes on TV it occurs to me that they are children.   I am twice the age of many of them.  Guys that can only grow a few scraggly hairs on their chins are running multi-million dollar companies that they founded.  Kids that are young enough to be my kids are pastoring large churches and publishing best sellers.  And this isn’t all just hypothetical, a gymnast I used to coach has earned her doctorate and is a college professor now!

It all just depresses me as I think, have I just been sloughing off?

But then Zach reminds me that age is just a number.  It doesn’t matter how my accomplishments measure up to anyone else.  Zach’s development is way behind what other 8 year olds are doing.  And each year he falls further behind.  We used to look for the magic bullet, that one therapy or program that would click with Zach and catapult him into his developmental age bracket.  Now I realize that will never happen, there is just too much ground to cover.

Meanwhile Zach keeps plodding along.  He learns new things all the time.  Recently he has become much more aware of his environment.  He likes going downstairs and sitting on the couch.  It’s like he’s just discovered a neat new place to hang out.  We used to be able to easily sneak things past him that we didn’t want him to see (like birthday gifts or potato chips that were meant for dinner later).  Now he notices these things.  Shopping with Zach used to be a challenge because he just hated being in the store with all the noise and only wanted to leave.  Now it’s difficult because he sees those Oreos and Zingers on the shelves.  He has been watching his brother play video games and, for that matter, seems to really know that he has a brother now.  And there are many other little things that happen from day to day.

He may be far behind, but he is still moving forward.  It is like that wise motivational speaker says, Dory from Finding Nemo.  “Just keep swimming, just keep swimming, just keep swimming.”  Life isn’t a sprint and in the end we aren’t measured against any other person.  We’re just responsible for what we were given to work with.  Jesus told a parable where a master entrusted his servants with money while he left on a long trip.  The first servant doubles the 5 talents he was given and the second doubles the 2 he has.  When the master returns the third servant is condemned not because he did not amass 10 talents like the first or 4 talents like the second, but because he did nothing with the 1 talent he was given.

Zach says don’t worry about how much you’ve got.  Ask, “What am I doing with what I have?”

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.