Friday, July 20, 2012


History is a gallery of pictures in which there are few originals and many copies. 

-Alexis de Tocqueville

Nobody, I think, ought to read poetry, or look at pictures or statues, who cannot find a great deal more in them than the poet or artist has actually expressed. Their highest merit is suggestiveness.
-Nathaniel Hawthorne

Friends of ours once sent us a Christmas card of their two beautiful children posed in front of an large white mantel.  The perfect setting for a slice of Yule-tide Americana.  When we got the card, my wife looked at it curiously for a moment with no real reaction, turned it over to read the greeting.  She then let out a bellowing laugh.  She was laughing so hard, she could not find the words to tell me what was so funny.  She could only manage to pass me the card.  Set against the beautiful, high-end magazine, air-brushed quality backdrop were the flushed red faces of two clearly miserable children with the remnants of tear marks on their faces.  Curious selection, no?  I too paused curiously wondering about the picture selection…until I turned the card over and read the punch line:  “After 2 hours and 3 rolls of film, this was the best picture we could get. Happy Holidays anyway!

I admire our friends for sending that card.  It confirms one of the clichés I think I invented to get my family through the rough-cycles of Autism – “If it doesn’t kill you, at least it will give you a good story to tell.”  Looking back now several years later, it’s funny how life can throw a wrench even in the most well-thought out, well-intentioned plans.  Even a “bad” picture can provide a glimpse of the funny quirkiness of life many of us have been through.  Those unexpected things are sometimes the most memorable.  Indeed, I don’t remember any other cards I received that year (or even this year).  

On the other hand, we have a picture of our Little Man that I took at a Fourth of July celebration a few years ago.  He is standing tall and still against a fence – holding a small  American Flag as if he was watching a Patriotic Parade.  He is looking directly into the camera.  It is rare to get such a good picture of the him.  He rarely is still enough to get the shot and, when he is still, he will rarely look at the camera, let alone smile.   As soon as I saw the image, I knew I had a keeper – maybe even an All-timer.  Here was this little boy, in a struggle with physical and mental complexities – frozen in time as typical All-American young man. 

As great as that photo was, it just didn’t feel right.  It was not him.  This adorable little boy does not stay still.  Whatever the hell Autism really, truly is and whatever unknown havoc it is reeking inside him, it is not a little serene slice of Americana.  For the Little Man, it causes him to be in an almost constant state of motion.  The truth is, as perfect as the picture looked, was an absolute fluke.  He didn’t stop to pose for it.  In fact, he didn't stop at all.  He was having a bad day and was off on his own, unable to process the fact that I was watching him and oblivious to the fact I wanted to take his picture.  He was lost in his own mind, his own Autism induced world.  I could not get him to acknowledge me.  As I watched him run back and forth with the flag, unaware of my presence, I figured I could at least get an action shot of him running with the flag – like Mel Gibson style from the movie The Patriot (“Hold the Line!”)  So I pointed and clicked.  Imagine my surprise when I saw the resulting image described above.  It was the perfect picture and he was not even aware I took it.  It just looks so right – that its wrong.

Funny, our friends spent hours trying to get the perfect picture of their beautiful children and had to settle in frustration for a curious photo that did not present a true image of their family.  And I spend one-click trying to get any passing image of our little boy that day, and had to lament the fact that the perfect image I captured did not present a true image of our Little Man. 

Welcome to the deranged world of Autism!

Friday, July 6, 2012


I think there are two parts to each of us: who we are day to day, and who we are in our broader intentions. Second guessing comes when the smaller part—the one that is at the effect of everything—is afraid of the greater part that’s forging a new way.  -Sonya Derian

Good decisions come from experience, and experience comes from bad decisions.  -Unknown

How much time do you spend second guessing yourself?  Should you have spoken up?  Should you have gone?  Should you have called?  Should you have said “No.”  Should you have apologized? For a mental lightweight like me, the list is literally endless.  Even without the curve ball that is Autism, I was destined to a future on a pleather couch putting some therapist to sleep with everything I rue.  Lucky for you, instead of doing that, I started this blog!

I am Mr. Cliché, but I have to admit, I find it extremely hard to forgive myself.  It is really hard to let go of a past mistakes.  It is very hard to stop wondering “what if.”  It’s hard to not want to go back and meet myself in the past – and slap myself on the head.  Hard,

For my wife and I, raising a child with Autism has multiplied both the number and the significance of things we second guess.

To this day, literally to this actual day, we still second guess ourselves on whether we should have noticed Autism sooner.  How many times did we explain some of the early red flags away with “he just needs more time” or “all kids do that” or “it’s a second child thing?”  Thinking about those days and those times still gives me a pit in my stomach.  It still makes me feel like a fool. 

Now, don’t get all rational on me and ask what would be different today if we had noticed 12 days, 12 weeks, or 12 months before we actually did,  because the rational answer is most certainly nothing.   [Who asked you to crash the pity party with your fancy rational questions?]

[ While I’m writing in brackets, it seems like an apropos time for a PUBLIC SERVICE ANNOUNCEMENT.  If you know anyone who has concerns about the development of a child, please read my some of my earliest posts on the First Signs we saw of Autism   WHAT'S IN A NAME  and OTHER SIGNSPlease.]

We find it almost impossible to believe that this cruddy Autism that is imposing its will on our dynamic little boy is entirely beyond our control.  Let me reiterate that:  It is IMPOSSIBLE TO ACCEPT that WE HAVE NO CONTROL over the uninvited, unwelcome and unwanted invader that had imprisoned my beautiful blue-eyed little boy in his own body.  Not only is it impossible to accept it.  We will not accept it.

One of the cruel tricks Autism likes to play is to be completely and totally unpredictable.  From one day to the next, or even multiple times within the same day, we can experience dramatic, radical shifts in the Little Man’s demeanor.  One minute he can be calm, serene, clear, and cuddly.  The next minute he can be wild, loud, unapproachable and flailing.  Such dramatic changes are not normally minute to minute, but  they can and do sometimes happen that way.

When you have a child who senses are extremely sensitive to small variations and who has severely impacted communication abilities, what do you do when you see a radical change in his behavior or demeanor.  Of course, you second guess yourself!

Should we have let him watch that show?  Should we let him repeat a Vivaldi song 50 times in a row?  Should we force him to finish his dinner?  Should we have reprimanded him for that outburst?  Should would let him eat a piece of cake at his birthday party?  Should we make him sit at his seat at dinner time?  Should we give in to his request to play Wii?  Should we give him a third-bath of the day?  Or shouldn’t we?

Of course, as soon as you think you found the answer to one of those questions, circumstances change and you second-guess the answer.

But, by my way of thinking, if you are confronted with a challenge that you have not yet solved, and you are not challenging your assumptions and second-guessing your decisions, you have given up.  For me, for this Little Man, for this family, I prefer the lonely, pit-in-the stomach- 3 AM staring at the ceiling search for answers -- to the serene resignation that comes with accepting the battle is lost. 

Now, pardon me while I go back to second guessing!