Monday, April 30, 2012

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

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!

Saturday, April 28, 2012

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

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!

Friday, April 27, 2012

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


“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.”  (

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:

§   1 in 88
§  Boys: 1 in 54

New Jersey:
§  1 in 49
§  Boys: 1 in 29

Thursday, April 26, 2012

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

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!

Wednesday, April 25, 2012

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

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!

Tuesday, April 24, 2012

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


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

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

I try not to torture him TOO much!

Monday, April 23, 2012

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

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 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.

Saturday, April 21, 2012

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

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?

Friday, April 20, 2012


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

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.  

Thursday, April 19, 2012


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

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.  (

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:

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.

Wednesday, April 18, 2012


People are always looking for the single magic bullet that will totally change everything. There is no single magic bullet.- Temple Grandin

On the mountains of truth you can never climb in vain: either you will reach a point higher up today, or you will be training your powers so that you will be able to climb higher tomorrow. -Friedrich Nietzsche  

So, perhaps the world's most famous person with an Autism Spectrum Disorder is Temple Grandin.  Anyone who has HBO has probably seen the movie about her.  Dr. Grandin has done so much for the Autism community by sharing her life and describing how she experiences the world.

Although I have not yet fully read her book, Thinking in Pictures, the excerpts I have read have helped us tremendously in understanding and deciphering our Little Man.

It is clear to us that much like Dr. Grandin, our Little Man thinks in pictures, not words.  I recall one day, when were trying to play Wii where my oldest and I were trying to teach the Little Man to push the "A" and "B" buttons on the controller at the same time. We tried to no avail.  Like imbeciles, the oldest and I, acting like we were talking to an Aunt with hearing problems, increased the volume of our speech:  PRESS "A" and "B."  No luck  One second later, the image of what to do popped up on the screen  -- no words -- and viola!  He unlocked it!

Visual image + no words = Ideal Learning Environment.

The best way I can get my feeble mind around it is to think of words as a foreign language to him.  Sure he can do it, but it is not his natural language.  Pictures are his natural language.  That discovery (which came with the assistance of some wonderful professionals) has unlocked so many doors for us.

Tuesday, April 17, 2012

O is for Optimism

Sometimes you just have to believe, whether it's rational or not, you just have to believe.  -Me

Don't give up.  Don't ever give up. - Jim Valvano

I called this Blog the "Blog of Isms" for a reason.  Sure there is the obvious:  I have a son who has been diagnosed with Autism and he exhibits a significant deal of quirky little attributes that we lovingly refer to as "ISMS."  Indeed, my lovely wife and I have even co-opted the "ISMS" term when we refer to those quirky little things we see in each other which  drive each other crazy which make us so endearing to one another.  

Sure, this blog is about those things, but it is equally about my favorite -ism:  Optimism. 

I hope anyone who reads this blog gets the sense that we are very happy and that we try to remain very optimistic about today, about tomorrow and about the future. 

Don't get me wrong, there are dark days.  In fact, there are many dark days.  But dark days are hardly unique to us.  And I do my best not to share our dark days here.  Just glimpses of what life with Autism is like for us, hopefully with a positive, humorous spin. 

I seriously mean that.  I have failed in what it is I am doing here if anyone, let alone someone affected by Autism, reads this blog and feels negative in any way.  No matter how bad things can be, they could be worse, and they will get better.    

If I had a dollar, for ever time I saw my Little Man, do something new, or achieve some milestone that I thought at one point was impossible, I would be planning to build my very own McMansion right now.  

How do you get through the dark days?  Well, clichés of course!  Jeeze, I would be working on my second McMansion right now if I had a dollar for every cliché I uttered in the last year. 

There is a cliché for every occasion.   Truly.  In fact, in preparation for this post, I discovered an internet searchable cliché finder.

But one of the most often repeated clichés in our house is this:  Life is a marathon, not a sprint. 

I can’t tell you why, but I believe they will find a remedy for Autism in our lifetime.  And, if they don’t we will enjoy the bejesus out of our time here playing the hand we’ve been dealt in the meantime.

Monday, April 16, 2012


How can you prove whether at this moment we are sleeping, and all our thoughts are a dream; or whether we are awake and talking to one another in the waking state?  - Plato

When I consider this carefully, I find not a single property which with certainty separates the waking state from the dream.  How can you be certain that your whole life is not a dream?  -Rene Descartes

Some time back in my not-too-distant blogging past I mentioned that our Autism puzzle includes two types of sleep issues:  1) falling asleep; and 2) staying asleep.  I previously posted about our falling to sleep issue.  Today, its staying asleep.

I would assume that just about any parent who is reading these words, has many a story they could tell about the early days of parenthood and trying to get a baby to sleep.  (For those parents who had the kids who slept 16 uninterrupted hours: I say to you (insert French word here).

For our oldest son, we have some doozies.  We broke every rule and ended up with a kid who thought his rightful place was between mom and dad every night.

But, there are sleep issues -- and then there are sleep issues.

When Autism first became a reality to us, I recall reading about some children with Autism who only slept about 2 to 3 hours a day in total.  Image that.  It doesn't even seem physically possible.  Indeed, if you find other blogs of other parents of children with Autism, you will find that Autism with sleep problems is not an uncommon tale. 

One of the earliest memories I have of the Little Man was right after he was born and we were still living among moving boxes in our  current house.  He woke up about 2:30 in the morning.  Not uncommon for a baby and I - being the hero parent - jumped up to take the Little Man down stairs for a feeding and hopefully a quick return to sleep.  The return to sleep did not come until many, many hours later.  At the time, it seemed like no big deal -- just a baby being a baby.  But, of course, it didn't stop there.  

There have been times, with no real discernible pattern, where, for as many of 4 days a week, our Little Man would wake up and 2:30 in the morning for the day.  Thats right:  For the ENTIRE day.  We are not talking a simple re-tuck in - or an I dropped the lion.  We are talking a full blown adrenaline rush of energy.  Now, if you know the Little Man, you know that if he is awake, he is talking.  And with 2 other kids sleeping- 2:30 a.m. playtime can be awfully disruptive.  

RANK SPECULATION WARNING:  I have a theory which some day I might discuss in more detail, but I believe that our Little Man has a significant problem processing hormones, such as adrenaline and testosterone, which the body produces naturally as part of the growth process, and which cause him periods of intensity which he can not physically control.

You can trust me-- if you can think of a trick for getting this kid back to sleep, we have tried it- from sweet love to tough love. to everything in between.  Fortunately, the 4 days a week thing only happens from time to time.  Sometimes we can go weeks without it.  There is no rhyme or reason and no real way to prepare for it.  

I would give you the current statistics, but I don't want to jink it!

Saturday, April 14, 2012


I am not afraid of tomorrow, for I have seen yesterday and I love today.  - William White

Okay, so I labeled this post Mickey Mouse Clubhouse, to discuss an intriguing pattern we see in our Little Man.  It has happened with the children's show Mickey Mouse Clubhouse, but it has also happened with the other shows, such as Jack's Big Music Show, the Little Einsteins and it has also happened to the music of the Laurie Berkner Band.  

For those of you that do not know of these newer kids show, these are all shows which have various levels of music and varying degrees of animation or puppetry.  [Just for giggles, I attached below, a Jack's music show parody someone did of Jack playing System of a Down.  Man, are people creative and talented or what]

The pattern goes something like this.

1)  When the Little Man is introduced to something new, such as Mickey Mouse Clubhouse, he shows no interest in it;

2)  Slowly, over time as he hears songs in the shows, he becomes intrigued, and will start to watch;

3) He will start to love the show and ask to see it more and the show seems to make him happy and relaxed;

4) He will start to become obsessed with the show, so that he demands to see it all the time and is reduced to tears if he does not see it;

5) He starts to draw and write and act out scenes from the show, even when it is not on; 

6) Then, out of the blue.  The mention of the show, any song it, reference to it; and any image of it; makes him so upset he is reduced to tears;  

7)  The show and any reference to it become contraband in our house.

We literally have about 10 shows that we do not let on because he is at stage 6 for them.  

And, now, with out further adieu, ladies and gentlemen, I introduce to you:  Jack's Big Music Show performing System of a Down:

Friday, April 13, 2012


No vision and you perish; no ideal, and you're lost;
Your heart must ever cherish; some faith at any cost.
Some hope, some dream to cling to; some rainbow in the sky;
Some melody to sing to.  Some service that is high. 
-Harriet Du Autermont


Some children hold onto blankets; some hold onto binkies; or other things.  Our Little Man holds onto lion.


Lion is a sweet stuffed animal that was given to us as a present almost 9 years ago, before my first son was born.  It had a little button inside that  when pressed said in the cutest little voice:

Let's go to the zoo!
There's lots to see and do.
Lion's, tigers, elephants and bears.
Even a monkey with some banana to share.

Our oldest son never really took to lion.  He had other interests.  But, lion became the Little Man 's everything.  He is such a part of almost all that we do, my wife and I actually refer to him as our fourth child.

[House Secret:  Lion has been to Disney World; but our youngest has not !].

We have spent many frantic nights ripping the house apart trying to find the lost stuffed lion -- with the Little Man yelling "WHERE IS THE LION?"  We actually once purchased a spare lion -- which the Little Man rejected outright.

As you can imagine, over 9 years lion has gone through quite a lot of wear and tear.  A dip in the toilet here, a drop in a mud puddle there-- and he has developed such a distinct [rancid] smell that I now jokingly refer to him as "Stinky Pete."

Okay.   Now I must come clean. That is not a picture of lion.  That is a picture of another lion I found on the Internet.  Below is a picture of what lion looks like today-- like 5 minutes ago.  I had to wrestle lion out of the Little Man's hands just to take this photo.




Thursday, April 12, 2012


Practice random acts of kindness and senseless acts of beauty. – Anne Herbert

That best portion of a good man's life; his little, nameless, unremembered acts of kindness and love.  -William Wordsworth
Can I get squishy today?

No snide comments.  No strained attempts at humor.   No long winded stories.

Just gratitude for all of the kindness we come across every day.

As you might imagine, I read a lot about Autism: news stories, tweets, blog posts, etc. There are a lot of sources of some very bad news involving Autism.   

You can sometimes get caught up reading the headlines and horror stories and lose hope.  You hear about a child dis-invited to party because he has Autism.  You hear about a child locked in a padded room at school.  You hear of a child smacked by an adult aide on a school bus.  You hear of a child left on a school bus alone by a careless bus driver.  Things can seem pretty daunting. 

Those problems are all very real and I admire and support the brave parents and advocates who bring those stories to the forefront.  My family has greatly benefitted from the tireless effort of many who have gone before us and many who stand beside us.

But, if I were to pick one word to describe the number one thing I have experienced from people on this Autism journey, its kindness.   From my family, from friends, from neighbors, from teachers, from aides, from medical professionals, from private service providers, and now, most recently, from random people around the world who have stopped by blog as a result of this A to Z challenge,  I have experienced so much kindness. 

Sure there is an occasional knucklehead with “cant-keep-my-eyes-to-myself-itis”  staring strangely when our Autism train is derailed.  But for every one numbskull there are countless numbers of people who are genuinely kind.

This is all not to mention, the kindness our Little Man experiences from his brothers, cousins, neighbors, and class mates.  I posted one short story before about a beautiful experience our Little Man has had with one kind little boy in his “typical” first grade class. (Small Acts/Big Impacts).  But, that was not an isolated act of kindness.  My wife and I are constantly touched by stories of kind young children in his class going out of their way to play with him, to teach him, to help and to befriend him.  In fact, just yesterday, a mom reported to us that her daughter insisted that our Little Man be at her birthday party – since she enjoys reading together with him in class so much.  She even asked to talk to him on the phone to invite him personally.  Heartwarming.

Newspapers filled with stories of kindness would not sell.  But, kindness is all around us.

Kindness:  Recognize it; be grateful for it; and pay it forward.

Wednesday, April 11, 2012

J is for JOSHUA

“And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it.” 
 Roald Dahl

 I will give you three guesses as to why I am choosing the word Joshua for my J word. 

1) No, it has nothing to do with the biblical figure

2) Nope.  Nothing to do with the U2 or the National park in Southern California; and 

3) No, it has nothing to do with one of my favorite books:  Joshua: A Parable for Today.

I would tell you why I chose the word, but it is super-duper-secret, highly confidential, need to know information.  

Okay, fine, I guess since you are reading this post and have gotten this far down you must need to know.  Touché.  Well played.  

I will give in.  But before I do that, let me say this:

To the Little Man:  If you have somehow unlocked the closet door, have climbed the shelves to find the laptop, hacked our password, figured out how to turn on the Wi-Fi and have navigated your way to this website, “Congratulations, you little Houdini,  you are punished!"  You are also forbidden from reading further since I am about to reveal some House Secrets.

Do the words:  “Greetings, Professor Falken” mean anything to you?  How about the words:  Let's play Global Thermonuclear War.

That’s right!  Those quotes are from Matthew Broderick’s pre-Ferris Bueller movie War Games (1983).  Joshua is the name of the computer in that movie.

We use the word Joshua in our house as a code word for our laptop computer. 

You see, our Little Man has an unhealthy love of the computer.  Actually, it not the computer itself, but the internet access it offers which causes him problems.  He cannot help himself, but getting on Google and searching for his demons:  Remember the Baby Einstein Post?  He gets on Google and will search for anything Baby Einstein related.  Imagine our surprise one day when we hear him reciting Baby Galileo in Spanish!  I kid you not:  All the Spanish I know, I learned from his Google searches:  Planetas!  Galaxias!  Estrellas!

[O.K.  That's not all the Spanish I know.  My cousin also taught me: ¡Mis pantalones están en fuego!]

So, we keep the laptop hidden.  It’s only to be used when the Little Man is asleep or at school.  All other times, we dare not refer to it by its real name – only as Joshua. 

Added bonus code word:  We also call the iPad   :  The Girl from Ipanema!  

Tuesday, April 10, 2012

I is

"If your determination is fixed, I do not counsel you to despair. Few things are impossible to diligence and skill. Great works are performed not by strength, but perseverance."  -Samuel Johnson 

"What this power is I cannot say; all I know is that it exists and it becomes available only when a man is in that state of mind in which he knows exactly what he wants and is fully determined not to quit until he finds it." -Alexander Graham Bell 

Okay, I have to admit, I was struggling a little bit with the letter I.  So, I resorted to the dictionary.  The way I see it, if you are going to take some time to pull out the dictionary for this challenge, you do not waste your time with some nickel or dime word.  You go for the full fifty-cent word.

So I am dedicating this post to the song "I'll Whip Ya Head Boy"  by American rapper, entrepreneur, investor, record producer, and actor - Curtis James Jackson the Third (a/k/a Fifty Cent).  

No, not that Fifty Cent, silly.

My Fifty Cent word de jour is ideopraxist.  A word that is so Fifty Cent that Microsoft Word doesn’t even recognize it as a real word.  But, it is.

Ideopraxist:  n. One who is impelled to act by the force of an idea; one who devotes his energies to the carrying out of an idea.

If you read my earlier post on the The Future Demise of Sheriff Woody, the definition of ideopraxist might sound familiar to you.  Ah, yes.  Our Little Man is certainly an ideopraxist.  He gets an idea in his head, and he is determined to fulfill it.

Recently, it was the mall.  Thanks to the Model Me Going Places app on the iPad, the Little Man got the idea in his head of going to the mall.  About two weeks ago, I came home for work and the requests started:  “I want to go bye-byes in the car to the mall.” 

The Little Man has a significant communication impairment, so a meaningful back and forth communication is almost impossible.  “What do you want to do at the mall,”  we asked.  No response.  We gave him a prompting phrase, “At the mall, I want to get _________.”  No response. 

It’s hard to get there on a week day school night, but he persists patiently placing his request the next night, the night after, and the night after that.  So cute.  So sweet.  Finally it’s the weekend and it’s time for some daddy and me time at the mall.  I had no idea what he wanted at the mall.  Another set of planets? Another set of stackable rings?  Nope.

We rode up and down the escalators a couple times. Then we rode up and down the elevators.  Then, we went in and out of a couple of stores.  Then, he was ready to go home.  No purchases, no demands, no requests.  Turns out, he just wanted to experience what he saw the little boy doing on the app. 

He left with a huge smile on his face.  Box checked.  The ideopraxist fulfilled his idea!