PEOPLE

Each day is made up of the actions of other people.  So, when you are some one else's other person, why not make their day.  -Me

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So, I haven't posted in a while, but I had to share an experience.

I took the Little Man to the supermarket on Saturday.  The supermarket is not always (or even usually) a successful endeavor.  Many times when we go out in public, my wife and I are on hyper-drive.  Get in and get out as fast as you can to shorten the window of time where Autism can reveal itself in all of its glory.  Such a frantic pace is not good for the Little Man.  If we are going to build familiarity and resiliency, slower is better.  So this past Saturday, I hardened my skin, prepared for the worst, and decided to make the supermarket the place to socially interact and share an experience with the Little Man.

I know I mentioned before that the Little Man was smart.  Truth is - I know that he is even smarter than I think he is.  I always like to push the envelope.

As we went down the Italian foods/pasta aisle...I used a single word  "Spaghetti" and I happily followed him down the aisle and watched him come to rest in front of all of the boxes of different pastas.  I parked across the aisle and watched him look around at the words on the boxes.  He heard me, processed it, and knew what to do.  He was looking for a box of Spaghetti.  We were working together.  I watched as he looked up and down and finally recognized the pasta just above his head.

Truth is, it took several moments for him to find the pasta.  Then, cutely, in only the way he can, he dramatically jumped up and down several times, scripting a "I can't reach it"  -- all while the box was clearly in his reach.

Now, at that time, the supermarket was crowded and the combination of my cart and his spaghetti search was blocking the aisle.  I felt someone behind us, but I wanted soo bad for the Little Man to make the discovery and succeed in this simple task.  But, the "good citizen" in me was feeling the pressure to just grab the box, grab his hand, and make way for the normals.   But, I didn't.  I waited those extra few seconds as he proudly grabbed the box, put it in the cart, and looked to me for what was next.  Excellent.

Now to deal with the fallout.

I turned around to see an older man waiting stoically for us to make way.  I figured his eyes must have been rolling in frustration as he waited for our side show.  So, I sheepishly turned, looked at the man and apologized.

"No need," he replied.  "I enjoyed watching him."  As he walked away, he turned back and said "Enjoy it.  They grow up too fast."

I don't think that man knew we were dealing with Autism.  I am sure he did not know that having the Little Man out with the masses is a stressful endeavor for us.  To him, we were just a regular father and son, enjoying a regular father and son activity.  And, he said the perfect thing.  Believe it  or not, something so simple gave me validation -- and confidence to do it again.

I wish I would have gotten his name.  I wish I would have told him how much those simple, kind words meant.  But I will not forget what he said and did.  Pay it forward!

YOU MUST BE BANANAS

“The mistakes I've made are dead to me. But I can't take back the things I never did.” 
― Jonathan Safran Foer , Extremely Loud and Incredibly Close

“We learn from failure, not from success!” 
― Bram Stoker, Dracula

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I believe I once described the Little Man as a picky - strike that - combatively restrictive eater.  Perhaps one day I will tell you the little story of RDI and the Miracle of the Lemons, but today the topic of conversations is BANANAS.

Our Little Man loves bananas.  In fact, bananas are the only fruit the Little Man will consume.

Unless, of course, you consider tomatoes a fruit.  I don’t think I ever realized the was such a Tomato-Fruit or Vegetable-Kerfuffle until I just looked it up a minute ago.  According to Wikipedia, while a tomato is “botanically a fruit, it is considered a vegetable for culinary purposes (as well as by the United States Supreme Court, see Nix v. Hedden), which has caused some confusion.”  Well, I say.  Seems like a tomato is a fruit, except when it isn't.  Only in America!

Anyway, the problem with our Little Man and his love of bananas is that he is stuck on Gerber Stage 3 bananas. 

You read that right.  The only fruit eaten by our seven year old little boy is Gerber Stage 3 Bananas.  I don’t know if it is a texture thing, or a routine thing, or an Autism thing. But whatever the H-E- double hockey sticks it is, the Little Man will not eat a regular banana.  We have tried many times and many ways.  Small chunks, wholes, halves, and, thanks to the Wiggles, mashed.  No-no-No and “Heck No.”

Fortunately, however, his love of the liquefied stage 3 bananas allows us to use them a delivery mechanism for all kinds of fun supplements he would otherwise reject.  Score!

Now back to the tomato.  The Little Man loves pizza, so we started making pizza at home.  The wife purchased some all natural sauce, which had small chunks of tomato in the jar.  One night, they are a-making-ze-pizz-a-pie, and lo and behold, the Little Man downs, a spoonful of sauce, chunks of tomato and all!  Better yet, he went back for more!  

Not content to leave well enough alone, I had a brain storm.  Or at least what I would call a brain storm.  I think the wife called it a brain fart.  (You, know To-MAY-To / To-MAH-To and all.)  I cut up a few small piece of banana, about the size of the tomato chunks, and, unbeknownst to the Little Man, I hid them inside the liquefied Gerber Bananas.   Damn, am I a genius, or what?

I sat innocently next to the Little Man, and slowly and calmly fed him the bananas.  A couple of chunk-free spoon fills to whet the appetite, then it was time to unleash my brilliance.  Here, comes the chunks…………….

Did you hear the screaming there?

In retrospect, it really wasn't that good of an idea.  What kind of brain surgeon violates the trust of his dependent little boy, and hides something he really doesn't like in a jar of the only fruit he eats?  I had to do some massive mea culpas  in order to get the Little Man to trust me – and eat the chunk-free bananas again. 

Thank goodness.  I feel like the wrath of the wife in me spoiling the –vitamin delivering bananas – would have dwarfed the visceral primordial scream the little man gave when he discovered the hidden chunks of banana in his banana soup.

Now, back to my day job!

A GLIMPSE IN TIME

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
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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!

GUESS AND GUESS AGAIN

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

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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 SIGNS. Please.]

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!

HOPING AGAINST HOPE

It's the best possible time to be alive, when almost everything you thought you knew is wrong.  -Arcadia by Tom Stoppard
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In the summer after 6^th grade, I went to a local carnival.  It was the type of vagabond carnival that wanders from city to city, town to town and neighborhood to neighborhood raising money for a church or civic association.  It had the big gambling tent, the small gaming booths, and rides that did not exactly look like they passed inspection - a child's slice of heaven.


In one of the gaming booths was a wheel.  A large spinning game of chance with the numbers 1 through 40 it. Only a quarter to play.  Pick a number, put your quarter on it and hope against hope that the wheel would spin around and point at your number - a 1 in 40 chance.  


As I was leaving the carnival on my way home, I spotted a prize on the top shelf of the 1 through 40 booth.  I could not believe it.  I wanted it so bad.  No, I needed it. Bad.  I had such an intense longing for that prize.  It had to be mine.  I only had one quarter.  One shot.  So I stepped up and placed my quarter on my favorite number at the time 23, and I watched and waited.

As the wheel spun, I looked up at the prize.  I could not have wanted it more.  I could feel the endorphins taking over my body as the desire became deeper and my apprehension grew.    I looked back at the wheel and watched it slowing down.  I performed a visual calculation in my head.  I had a real chance at this.  Forget reason.  Forget odds.  Forget reality.  Forget common sense.    I let my mind wander.  I could see myself running home to tell my parents about what had happened, about how my last quarter won me the coveted prize.  I could see all the fun I would have with the prize and could visualize sharing it with my sure-to-be-envious friends.

The wheel creeped closer to number 23.  4 numbers away.  3, 2, 1.....

And there it stopped - on number 40.  I click away from number 23.  I could feel my face getting flush as the vagabond carnival worker peered up at me with a look of pity as he slowly swiped my quarter- my hope - away into the carnival profit box.  I was devastated, angry, embarrassed.  I felt stupid for wasting my money, stupid for thinking I could win, and stupid for caring so much about something so small.

But still, I remember that moment today, like it was yesterday.  And I am still embarrassed to admit that.  The prize was a silly complete set of knock-off wrestling dolls, that I would have lost interest in in 6 months or less and would have ended up broken and in the trash.  But still the moment stays with me.

That story of me as a young boy, hopeful, naive, gullible, and believing in the irrational and unreasonable is a perfect metaphor for life as a parent of a child with Autism.  The "wheel" consists of all the anecdotal stories we have heard of all of the different way parents have found to ameliorate the effects of Autism in their child.  The "quarter" is in our hands, to chose which treatment, or method we want to bet on next.  

But the feelings of hopefulness and desire as we place a new bet, of shunning odds, or reason or common sense to believe we can win, and of anger and stupidity when our number is not called is not metaphoric.  Those feelings are all real and we live them every day, through every choice we make.

This weekend we learned it was not parasites in the digestion process.

But, we have a life time of quarters to keep trying.

A IS FOR AWARD! (Oh no! Not the A to Z again)

"In daily life we must see that it is not happiness that makes us grateful, but gratefulness that makes us happy"   — Brother David Steindl-Rast  

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Ok.  So I am weeks late in posting my reflections on the A to Z Challenge 2012. 

To put this Challenge in perspective, let’s just say that from the time I first started putting the proverbial electronic pen to the electronic paper on this Blog in 2008, until the A to Z Challenge started this April, I published 28 total posts.  That’s right, a whopping 28 posts in almost 4 years- a nice leisurely pace.  Going from that pace to 26 posts in 30 days is no easy task.  It’s not called the A to Z Walk in the Park.  It’s called a Challenge for a reason -  and I discovered that reason first hand.   It’s like going from a 5K to a marathon with no training.

But, it was worth every post.  The Challenge introduced me to a whole new world of interesting, talented, kind and diverse writers posting on all kinds of topics from dancing, to road trips, to mental health and to gardening in a Citrus Grove in Australia.  Its humbling and motivating to read what others have written on their blogs and see what kind remarks they left on my posts.  Indeed, it has motivated me to started a new blog to allow me to go off topic and hone my observational and writing skills in a new environment.  I call it View from the Hydrant.  I don’t where it will go, or if it will go at all, but I thought I might give it the old college try.

Now on to more important news:  I RECEIVED AN AWARD!

Imagine my surprise to return to writing on the blog to find one of my new blogging friends has nominated this Blog of ISMS for an award.  "Liebster" in German means dearest, beloved, or favorite, and it is an award given to certain bloggers with under 200 followers!

Now I must fulfill my duties as an award winner:

First, thank the presenter and link back to that person.  That’s easy.  Thank you to Carrie at The Slow Dripped Life for nominating me for this award.  Carrie is a very talented writer with an unbelievably positive outlook on life.  Her optimism and kindness are infectious and I encourage everyone to go read her posts.  Great stuff.  She writes prolifically and be sure not to miss Fridge Poetry Friday – I am addicted to it.

Next, copy and paste the award on your blog:  Booyeah!

Now, the intriguing part: to nominate 5 others.  Here we go:

First, I nominate Amy at From the Mom Cave.  I stumbled upon Amy’s site many months ago when I was preparing my post on that darn Baby Einstein Company (curse you Julie Clark).  It is a must read blog for any parent of a child with Autism.  It will make you laugh, it will make you cry, it will make you think, and it will make you admire Amy and her family.  I learned of the A to Z Challenge from Amy’s blog and am very grateful to her for that.

Next, I nominate The Mommy Patient at Doctor’s Orders.  This was one of the first blogs I read as part of the A to Z Challenge and looked forward to reading it every day.  You will have fun going through the past posts, reading the random thoughts and looking at the hilarious photos/artwork. Be sure to check out the early A to Z Posts about dancing.  Great stuff with talented drawings.    Oh, and she is super kind to boot. 

Our next nominee is Jana at Shut the Front Door.  You want some funny real life stories coupled with some seriously off-color humor to get you through the day?  This is where you want you to go.  She speaks in French sometimes – if you know what I mean- so if you don’t have a problem with that – you should definitely add this to your must read list.

Next is Deb at “Annals from a A Citrus Grove in the Suburbs.  What is there not to love about reading about life gardening in Sydney,  Australia? If you even have a little bit of an inkling to cook, grow your own herbs or vegetables or start gardening, I recommend you to follow Deb from the beginning of her journey.

Last, but not least is Horst from Tangents.   Horst was one of the first people I met through A to Z.  He is a brave man who shares his journey with mental health challenges, while at the same time producing beautiful pictures and educational insights.

So there you have it you are now reading an award winning blog!  And now back to your regularly scheduled Autism blogging.

The Zone

There is a fifth dimension beyond that which is known to man. It is a dimension as vast as space and as timeless as infinity. It is the middle ground between light and shadow, between science and superstition, and it lies between the pit of man's fears and the summit of his knowledge. This is the dimension of imagination. It is an area which we call the Twilight Zone. - Narrator, The Twilight Zone, Season One.

Believe with all of your heart that you will do what you were made to do.- Orison Swett Marden

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If you are a professional sports fan, you often hear that there are some of the most elite athletes who enter “the zone.”  The zone is an area where they are not flustered; where they can tune out all of the distractions of the crowd, of the arena, of the atmosphere, of the pressure; and where they can focus singularly on excelling at the task at hand. 

In Autism, we also have our own little version of that we call “the zone,” which in adjective form is “zoney.”  It has just become our little short shrift way of saying that the Little Man is having one of those days where he is particularly removed from any form of social interaction.  Those days, which appear from time to time without any discernable pattern, where the Little Man cannot respond meaningfully to a simple question, and is perseverating on the orderly topic de jure: colors, shapes, planets, letters, numbers and, of course, that Baby Einstein junk (See Baby Einstein Post).  Actually, the topic of interest most recently is the song A Whole New World – go figure.

I am not sure that I ever really used or understood the word “perseverating” before Autism imposed its will on our lives and, if I did, I certainly did not appreciate what it meant.  Trying to describe what it is and how it has revealed itself to us would be akin to trying to tell someone what sardines taste like.  You can use all the words you want, but you can never truly appreciate it until you experience the unpleasantness for yourself. 

The dictionary definition of perseveration describes what it is quite well:  “Perseveration is the repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder.”  That’s all well and good, but what is the fun in book learning?  Some things you just need to experience. 

I know I referenced this before, but did you ever get a song in your head and couldn’t get it out?  After a while it gets so annoying and so frustrating, you just need to do anything to get rid of it.  Imagine now, that you could not get that song out of your head for a few days.  And imagine now that you were compelled to sing it.  Image that all you could focus on is the lyrics; that you could not even process simple requests; or perform basic functions; or be aware of your surroundings.  All you can focus on is that song. 

One of our truly incredible providers once said our Little Man almost always has a full length feature presentation going on inside his head.  On an average day, his mind is constantly going back and forth between the “real world” and The Zone.  Some days, the good days, the “real world” wins and he is engaging, and brilliant and fun and clear for most of the day.  Other days, the bad days, he is stuck in the Zone and he is removed, and frustrated and challenged.    

And now, back to figuring out what the triggers are!