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!

Y is for Yesterday

A single act of kindness throws out roots in all directions, and the roots spring up and make new trees. The greatest work that kindness does to others is that it makes them kind themselves. -Amelia Earhart
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Yesterday was just a typical day in the life of our family and it was a good one.  Strike that.  It was a very good one.

Yesterday was a school day.  Our Little Man spends part of his day in a "self-contained" class with other children, like him, who have been diagnosed with Autism Spectrum Disorders, and part of his day in a typical first grade classroom.  Given the nature of his impairment, our Little Man is accompanied to the typical first grade class with a one- on-one aide.  Her name is Mrs. P.

For those new to the blog, I should tell you that our Little Man has a severe communication impairment.  In more technical terms, he has a severe "expressive communication" impairment.  He has great difficulty expressing himself.  Its almost as if he doesn't understand the concept of a conversation.  If you ask him something with a definitive, concrete answer, he can, usually, with prompting, answer it.  Questions like: What color is that car; or What is my name?  If you  ask that kind of clear question, that has a definitive answer, you have a reasonable chance of getting a response.

Now the fun part,

Ask a question with a subjective, open-ended or unclear answer and you have almost no shot at getting a response.  Questions like: How are you; or How was school today?  Such questions can not be meaningfully answered.

His inability to answer that second question is particularly troublesome to his parents.  We send him on the school bus in the morning and receive him home in the afternoon, with almost no way of determining what happened to him in the day.  Most days, we get a pre-printed form home, with a smiley face circled on it.  That is all we know.  

How was his day:  

Doesn't tell you much, I know.   

In this day and age, with all the reports of bullying and other such nonsense at schools, it certainly is a big leap of faith to allow a child with severe communication impairments out into the world.

Thankfully, we have Mrs. P.  A few weeks ago, my wife asked the school for more information about the Little Man's day.  He was spending more time with Mrs. P in the typical first grade and we had no idea how it was going.  Other than Mr. Smiles above, we literally had no idea.  But that simple request from my wife opened a whole new door of communication.  Each week Mrs. P sends home her hand written notes of  her observations.  We look so forward to those glimpses of his days.  

Mrs. P's care and concern for the Little Man is immediately apparent by what she writes and how she writes it.  Indeed, just yesterday, on the eve of the Little Man's birthday, Mrs. P gave him a book and in the book she inscribed the following:

Happy Birthday!  Thanks for teaching me something new everyday.

At a time when there is some pretty bad news in our community about children with special needs and bullying in our school district, we are certainly lucky to have someone like Mrs. P.

Enjoy the weekend!

X+Y= Higher Risk of Autism

It is the mark of a truly intelligent person to be moved by statistics.- George Bernard Shaw

The probability that we may fail in the struggle ought not to deter us from the support of a cause we believe to be just. - Abraham Lincoln

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“Each person normally has one pair of sex chromosomes in each cell. Females have two X chromosomes, whereas males have one X and one Y chromosome.”  (http://en.wikipedia.org/wiki/X_chromosome).

Why does that matter here?

Have you seen the most recent statistics on the prevalence of Autism?

When we first started our Autism journey about 5 years ago, it was reported that the risk of having a child with autism about 1 in 150.  In 2009, that figure was changed to 1 in 110.  Earlier this year the United States’ Center for Disease Control and Prevention changed that figure again.

Today, it is reported that 1 in 88 children in the United States is diagnosed with an Autism Spectrum Disorder.  See this ABC News Story

If that figure was not staggering enough in itself, consider that there are also regional differences.  In New Jersey, where we reside, the numbers are even more alarming.  The CDC statistics show that 1 in 49 children in New Jersey is diagnosed with an Autism Spectrum Disorder.

Now back to the Chromosomes. Why does it matter if you have 2 x chromosomes or 1 x chromosome and 1 y chromosome?

You may have heard that boys tend to be diagnosed with Autism more than girls.  Here are the statistics broken down:

National:

§   1 in 88

§  Boys: 1 in 54

New Jersey:

§  1 in 49

§  Boys: 1 in 29

(Source:  http://autismnj.org/AbouttheNewsroom.aspx#CDC Rates)

The Wife

I was a child and she was a child

   In this kingdom by the sea:

But we loved with a love that was more than love-

   I and my Annabel Lee,

Annabel Lee, Edgar Allen Poe

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I usually run all of my posts by my wife to make sure my occasionally occurring Foot-in-Mouth Disease does not rear its ugly head.  Not this one.  Look out gums, here come the toes!

I met my wife when I was 14 years old.  It was love at first sight.  We quickly became old-fashioned, old school style high school sweethearts-the kind where weekends hanging out with friends quickly became weekends hanging out together alone.  It was the kind of love where it did not matter what we were doing, so long as we were doing it together.  Our favorite thing then (and now almost 25 years later!) was driving in the car together.  If there was an ice cream store 2 miles away, we would drive to the one 20 miles away, just to enjoy each other’s company. 

I often tell my wife that I believe our coming together was planned by someone or something far more powerful than us.   I think we met when we did for a reason.  Her father passed away when she was only 17 – and I got to know him for about 3 years.  He was a very special man – a gentleman in the pursuit sense of the word – and I am honored to recount his life to our children, who never had the honor to know him.  

If there was ever any doubt in my mind about the existence of a higher power and that power’s role in bringing us together, that question was resolved conclusively when Autism entered our lives.  All that I do, all that I say, all that I am, all that I have written, the smile on my face today and my optimism about the future are all possible because of her.  She is loving, patient, caring, compassionate, intelligent, selfless and beautiful. 

My wife is a tireless researcher and advocate for our child.  If there is an article out there on Autism, she knows about it.  If there is a story out there about a child with Autism, she has read it.  If there is a treatment option, she has considered it.   She sacrifices all of her time to ensure the well-being of our children.  She sacrifices herself physically during those recurring sleep-deprived nights and days of flailing arms.  When not putting out the Autism-induced fires, there she is on the computer, researching, advocating, questioning, reflecting, listening, volunteering and offering advice.   

And, when she is not riding the roller coaster that is our life, she is there riding it with others- offering information to other families starting a similar journey and feeling their pains and sharing their joys.

When Autism is someday in our rear-view mirror it will be because of her efforts navigating us through it all.

How she does all of that and still puts up with me is a question for the ages!

V is for.........(wait for it)..........

Follow your heart, but be quiet for a while first. Ask questions, then feel the answer. Learn to trust your heart. - Unknown
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V is for VACCINES!

What is an Autism blog without a post on vaccines?

Even if Autism has not directly impacted your life, you have probably heard about the controversy surrounding vaccinations. 

Here at the Blog of Isms, we do not delve in to the controversial.  And, I am fairly certain that my two-cents on this topic are worthless.  Also, since I already alienated some of my readers with yesterday's revealing post on my love of soccer, I am not about to alienate the rest of you with commentary on vaccines.

But, hypothetically speaking, if I had to comment on vaccines, I would say the following:

Brilliant words. More brilliant words.  Insightful words.  Very insightful words.  Extremely insightful words.  Some self deprecating words.  Very, very funny words.  Filler words.  Words that will be edited if the post gets to long.  Creative transition words.  Plain words.  More plain words.  Poor word choices made in haste.  Words I will later regret.  Words that will later get me a smack from my wife.  Average words.  More Average words.  Some below average words.  Fifty-Cent words.  Words with brilliant and insightful commentary.  Words that will alienate someone.  Words that put the alienating words in context.  Healing words.  Kumbaya. 

I would follow that up with: Brilliant insight which will be purchased by Hallmark.

That all being said, I can tell you this: 

I have three boys now ages 8, 6 and 3.  After thoughtful consideration and due diligence, all three have received the recommended vaccinations.  The six year old has Autism.  The other two do not.

Please disperse.  There is nothing left to see here!

We Support the Union (no not that Union)

For now you know one of the greatest principles of success; if you persist long enough you will win.
-- Og Mandino
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At risk of alienating some of my less than tens of readers, I feel I have to make an admission:

I like to watch professional soccer.  Yes, its true.

About 3 years ago, I watched the Philadelphia Union play their first ever game at the newly constructed PPL Park on the Delaware River in Chester, PA.  I was not a huge soccer fan prior to that point, but there was something about being there live that was infectious.  I think it was, in soccer parlance, the Supporters Section.  At PPL Park there is a section, called the "River End" that is restricted to the Union "supporters," called the Sons of Ben.  You can't sit in that section unless you are a member of the Sons of Ben - and you really can't sit in that section unless you are prepared to stand, sing, and listen to the beat of a drum for the entire game.  Even for a casual observer, the atmosphere is truly amazing.  Here is a video and the lyrics to one of my favorite, pretty standard Sons of Ben chants.

                          We love ya
                          We love ya
                          We love ya
              And where you go we'll follow
                         We'll follow
                         We'll follow
              'Cause we support the Union
                         The Union
                         The Union
             And that's the way we like it
                          We like it
                          We like it
          Oh-oh-oh-oh-ooooooooooooooh
          Oh-oh oh-oh-ooooooooooooooh


Okay, so what does this have to do with Autism and/or the Little Man?

Um, I forget.  I wrote Union for the letter U a couple of weeks ago and don't remember why.

I kid you.  But, I did warn you yesterday that today's post would be crappy.

Long story short, did you ever see the movie Who Framed Roger Rabbit?  In the movie, the animated Roger Rabbit has a compulsion.  If someone knocks the old tune of "Shave and a haircut"  the Rabbit must, must, must, respond singing "two, bits...."  Even if the Rabbit is supposed to be hidden and quiet, he can't resist the urge to yell "two, bits...." to complete the tune and put himself in danger.

I often notice that our Little Man has a similar quality.  He is somewhat obsessive compulsive and hates having anything left incomplete.  If you start singing, Row, Row, Row Your Boat, he will make sure you sing it to the end.  This is even true if the song drives him crazy.

Cue the Union song from above.  So I played the video above for my kids one night and we had a great time all singing it together.  As you can imagine, the novelty quickly wore off and the attitude of the kids went quickly from "Dad, you're so cool" to "Dad, stop be so annoying!"

But, if you can't annoy your kids, who can you annoy?

So, I know the Little Man (LM) must finish the song once it starts, no matter how annoyed he is, so our version of the song goes a little like this:

ME:    We love ya, We love ya, We love ya
LM:    (yelling)  All Done!
(Pause)
LM:   And where you go we'll follow
ME:   We'll follow; we;ll follow
LM:   (yelling)  All Done!
(Pause)
LM:   'Cause we support the Union...


I try not to torture him TOO much!

Fun with the Letter "T"

“Have no fear of perfection, you’ll never reach it” – Salvador Dali

“Imagination is the beginning of creation. You imagine what you desire, you will what you imagine, and at last, you create what you will” – George Bernard Shaw

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It not easy coming up with 26 posts in one month on the topic of Autism that don’t make people want to jump off a bridge or burn me in effigy.   Several weeks ago the letter T seemed so easy.  Autism…Treatment Options.  I figured a little pontification on this treatment vs. that  one  and WHAM! I am off to my sure-to-be-crappy post about the letter “U.”  

But, in reality there is nothing I can say interesting about treatment options which isn’t on Wikipedia or About.com or any reputable medical website.  Many of my posts reference the different things we are doing with the Little Man.  

So, here I was yesterday struggling to come up with a concept for the letter T.   As I am batting ideas in my head last night at Mom-Mom’s house, I notice the Little Man using magnetic letters  to spell words on the fridge.  Right now, he is perseverating on the song “A Whole New World.”  In case you don't know what perseverating is, think obsessive compulsive times 10.  He listened to the song like 100 times this weekend and converted a towel into a magic carpet to act out the video.  The other day he actually wrote all of the lyrics out in crayon.  So, naturally, he is using the magnetic letters to spell out the title to the song.

Problem:  The magnetic letters at Mom Mom’s house have survived many grandchildren so what remains is not a complete set of letters, but a hodge-podge of different sets of letters gathered over the years.  Many letters are missing.  We had the makings of a possible meltdown on our hands.  The Little Man’s drive to get the words on the fridge (He is an Ideopraxist, you know) vs. the fact that many letters were missing. 

Now the interesting part.  The title “A Whole New World” has three W’s.  However, there was only one magnetic W in Mom Mom’s set. 

You often hear that children with Autism are very rigid in their thinking.  They like predictable patterns and they do not like change or the unexpected.  Those things are all generally true.  But, our Little Man is also immensely creative and has unbelievable problem solving abilities  (He is an Ideopraxist, you know).  We watched him as he used a letter “I” as a lower case “L”.  He got to the second “W” and used an upside down “M.”

Okay, now the truly amazing part.  He got to the third “W” with hardly any letters left.  I was thinking maybe a “E” on its back – but there were no E’s left.  Plus, this is a Post about the letter “T” right?  He got two letter “Ts” and made this:

Problem solved.

This kid never ceases to amaze me.

S is for Siblings

Sacrificing your happiness for the happiness of the one you love, is by far, the truest type of love. - Unknown

Sometimes being a brother is even better than being a superhero. - Marc Brown
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Over the life of this blog, I have written of our experiences with the Little Man – from before his diagnosis with Autism over 4 years ago until our experiences de jure.  Over time, I have made references to the 2 blessing in his life:  his Older Brother and his Younger Brother. 

On the morning I was preparing the L is for Lion post – (which seems like forever ago know by the way (curse you A to Z Challenge))- my oldest son pulled up a chair next to me.  He read aloud every word I was typing, as it was being typed.  He pointed out typos.  He suggested words when I was mulling over the right one to use.  He was so excited to get the camera and take a picture of the mangled Lion, and upload it.  He just loved being part of it all.  He loves helping his brother.  That is the way it always is for him.  He just loves helping and being part of it all. 

I felt the need to explain to him that I write this blog about the Little Man so I can share our experiences with Autism, so that we can hopefully help some family, like we have been helped in so many ways by others.

I told him that I had something special planned for him too.  When I get to the S post – today- I was going to post about him and the Younger Brother:  The siblings.  His eyes lit up and I could see the wheels spinning about what the post would be about.  Siblings and Autism.  He thought a minute more, before his face lit up and he said proudly:  “Yea dad, you can write about brothers acting like mothers.”

You have no idea how much it hurts to write those words.  Profound and heartbreaking.  To think that my beautiful, handsome, creative, intelligent, determined, sweet, compassionate and loving 8 year old little boy will remember his child hood as being “like a  mother” to his younger brother hurts.  It hurts so bad because it is true.   Over the years as we have come to rely on our other little guys so much all to help my wife and I keep it together: to act as extra set of eyes, ears and hands; to make sacrifices; to forego pleasurable activities; to forego trips to places; to forego things they would rather being doing; and, perhaps the most difficult, understanding why the Little Man gets seemingly preferential treatment. 

Our children are the spine of this family -  without them we are nothing.

I cannot pretend to articulate how special our children are, or how blessed we are to have them– I would need more than a single post- and more than an encyclopedia full of posts.  But, I can share with you these two glimpses into how special they are:

The Older Brother

Perhaps a few weeks before our Little Man was officially diagnosed with Autism, I knew something was wrong- I just wasn’t sure what it was.  I had many sleepless nights and was sad, scared and desperate.   I had the Older Brother, barely 4, laying on my bed, and I was helping him change his clothes.  I looked him deeply in the eyes and said to him – “Promise me, no matter what, you will always take care of your bother.”  To which he responded “okay.” 

A few weeks ago, I kiddingly told the Older Brother, now almost 9, that although he might not remember it, he entered into a valid and binding contract when he was 4 and he could not get out it.  My wife and I laughed as we recounted to him the story of that “promise” he made 5 years before.  He looked slightly startled and confused as to why we thought the story was humorous.  “Of, course I am always going to take care of him,” he said so matter of factly.  It was not even a question for him. 

That was not the first, nor the last time, his huge heart has brought his parents to tears.

The Younger Brother

The Younger Brother is only 3 years old.  Still practically a baby, he is so observant and tuned into the rhythms of our house. He is older than his 3 years.  One of the most difficult things for us to try to convince him not to emulate the ISMS of the Little Man.  Can you imagine the conversations?  The Little Man comes, looks at us and says- “I want chalk”  and my wife and I go overboard “Oh, that is so great you asked so nice.”  The Younger Brother comes to us and says – “I want milk” and we go crazy in the other direction- “Where are your manners!?  You don’t say ‘I want’ you say ‘May I please have.”  (Yes, we are saving money for therapy).

In a very rare moment a few days ago, the entire family was seated in our family room watching TV, when the Little Man wandered out of the room.  My wife and I have an unwritten 2 minute trigger- we do not want the Little Man unattended more than 2 minutes in any room.  If he has not reported back in 2 minutes, we have to go check.  Sometimes  we ask the Older Brother to go check and report back, or to just go play in the same room.  This day was different.  After a few moments without  the Little Man in the room, the Younger Brother got up, and made the dramatic pronouncement:  “Guys, I go check on him.  I be right back.”  Only 3 and he is naturally inclined to take care of his older brother.

Brothers being mothers indeed.

We are truly blessed.

Exit Question:  Why mothers and not fathers Older Brother?  What are you trying to get at?

REGRESSION

Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain." –Unknown

When the world says, 'give up,' hope whispers, 'try it one more time.'" -Unknown

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The word “regression,” when used in connection with Autism usually describes a group of children who develop age appropriate language abilities and social skills for approximately the first 18 months of their lives, and then lose those skills and abilities, typically around the age of 2.  It can be contrasted with early-onset autism, where the child misses developmental milestones without a noticeable regression.

In our house, we often use “regression” in a different way.  We use regression to describe those days, or periods of days, which occur without a predictable pattern, where the Little Man loses skills and abilities that were previously believed to be mastered. 

If you have or have been around a baby, do you remember those days when the baby would cry and you would have to guess the cause for the tears?  You start with the usual suspects: hungry, thirsty, tired, diaper.  You know you guessed right when the crying stopped.  Eventually, the baby develops the communication abilities to tell you what it is he or she needs – a point, a gesture, a smile, and ultimately words.

Well for us, Autism intervened to thwart the development of those communication abilities.  It took us a very long time, and a lot of hard work, to get the Little Man to communicate his basic needs to us in a way we could understand and act upon.  In the early days, when we wanted to know if he was hungry, we needed a visual prompt, such as a box of waffles, or the use of sign language – accompanied by the words:  Do you want a waffle?

Slowly over time we were able to remove the visual prompt and eventually the Little Man developed the ability to come to us on his own when he was hungry and say “I want a waffle.”

There are literally hundreds of examples of these successes.  Successes where you think he mastered a skill and you are lulled into a false sense of security.  If he is hungry, he will tell us, right? 

Then came regression day!

My wife and were startled to hear the Little Man downstairs screaming in tears.  What happened?  Was he hurt?  No physical signs of injury.  Are you hungry?  Do you want to go downstairs?  Do you want to watch TV?  Do you want to go outside?  These are all things he can ask for, but we received no response, no indication.

And the guessing game began. 

Perhaps a shower will calm him?  Nope.  A TV show? Nope.  A car ride? Nope.  Two tearful hours passed with no indication of what was wrong.  We were ready to call the doctor fearing it was something internal.  In a last ditch effort, we decided my wife would take the other kids, who were visibly shaken, out of the house while I tried a few more things.  As she was leaving, my wife left a bowl of Cheerios on the table and took the other guys out for a much needed respite. 

I saw them off as the Little Man stopped crying.  Three bowls of Cheerios, two waffles and a bowl of pretzels later, we discovered the problem:  he was famished. 

After weeks, months and years of progress, where he was able to communicate his basic human needs to us, why did he suddenly lose that ability?  That, my friends, is a question for someone more intelligent that I.   It is just a cyclical thing that happens from time to time in our Autism reality show.  Fortunately, the cycle goes back in the opposite direction and just, like that, he is back to himself, telling us what he wants – when he wants it.  

QIGONG MASSAGE

When I let go of what I am, I become what I might be.  -Lao Tzu


Be not afraid of going slowly; be afraid only of standing still. - Chinese Proverb
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I think you can imagine that when faced with a chronic disabling condition, such as Autism, you are willing to consider many different treatment methods. From the treatments supported with the most medical evidence to those supported with only anecdotal evidence, nothing is off the table.

There are many questions we discuss before we are willing to give a new ameliorative effort a try.  Is there any risk to our child?  What is the evidence that it works?  What is the theory behind it?  Does it introduce something foreign into our child's system?

I can tell you this:  I am willing to try any low cost, non-invasive treatment based on a handful of anonymous positive reports from the comments section of a blog.  You want me to wear a powdered wig and wear my shirt backwards while dancing on one leg bellowing out an ancient Mayan chant?  Show me where I can get a wig.  (http://www.beautyselect.com/bargain-colonial-man-1.html)

Enter the Qigong Massage.

About 2 years ago, my wife read an article reporting on the positive effects of pediatric massage therapy on children suffering with cancer. A little further Internet research and she read about the positive reports of parents learning and performing Qigong massage on children with Autism.

If you are interested you can read more about it here: http://en.wikipedia.org/wiki/Qigong_Sensory_Training

We are about 6 weeks into performing the massage methods on our Little Man.  At first, it was a little challenging to get him to keep still.  But we have since gotten into a groove.  He is starting to really enjoy it and even asks for it by name.

Best of all, we have seen some positive changes in our Little Man since we started.  He seems calmer, clearer, more engaged and happier.  This is definitely something we will keep doing and, so far, would recommend.