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!