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.