SPEECHLESS

Always kiss your children goodnight - even if they're already asleep. ~H. Jackson Brown, Jr.


Wow.

That is all I can say. Wow.

I am blown away.

Today, we took our Little Man to Children’s Hospital for a consult with their Biochemical Genetics-Metabolic Disease Section. Long story short, it seems we are simply ruling out any type of metabolic disorder that contributes to, or exacerbates the effects of Autism. They really do not expect that is the case with our son, but, that is not the point of this post. This post is about the Little Man himself.

We spent two hours cooped up in a small examination room, armed only with an iPod touch, a 3DS, and a pencil and paper. Did I ever mention that one of the effects of Autism in this Little Man is that, when he is awake, he is in almost constant motion? He usually eats, reads, draws, watches TV and uses the computer all while standing and moving back and forth, or jumping, or spinning – and always gabbing away. Not necessarily an ideal demeanor for a 14 foot by 8 foot exam room crowded with medical instruments.

We followed those two hours with a couple of urine samples, a longer period of waiting, and then the coup de grace – Blood work! Not one, or two, or three, or four vials of blood – but five vials of blood. Add to that a problem with the syringe and you have all the makings of a cataclysmic Meltdown o’ Rama. Imagine the confusion he must have felt, as I put him on my lap and held him in a hug a bear would have had trouble achieving as two strangers begin going at the arm - one holding the arm firm, the other poking at it with a sharp object. I really can not imagine how he felt and I really wish his condition allowed me to talk him through it.

He was obviously upset at the process. But I held his cheek to mine and soothed him the best way I knew how -- singing the Alphabet Song, and, when they said they were almost done, I counted down from 10 to 1 a few times. In those moments today, I felt a bond with him. I do not know what to call it. The best I can say is that I felt that although he may not have understood what was being done to him, he understood that his mother and I were trying to help him. And that he was comforted by that fact.

Under circumstances that could have led to a catastrophic distrust of us, and of doctors and hospitals, under circumstances that could have sent him into an uncontrollable meltdown, he rolled down his sleeves and skipped happily away – hand in hand with mom and dad.

I truly do not know if he understands or can appreciate what pride is, or how proud I am of him. But he doesn’t need to know. I AM extremely proud of him.

ASK, AND YOU SHALL RECEIVE? (Maybe)

"When a tree falls in a lonely forest, and no animal is near by to hear it, does it make a sound?"   - Physics by Charles Riborg Mann and George Ransom Twiss. 


Note to Self:  PAY ATTENTION!

Our Little Man is what they call "hyperverbal."  It might be more accurate to say he is super-extra-mega-hyperverbal.  Like hyperverbal on steroids.  More or less from the time he gets up, to the time he goes to sleep he is jabbering away.  In fact, I have carried him to bed while he was asleep and heard him muttering.  Usually it is something repetitive like dialogue from a TV show, or part of a song.  Sometimes, or maybe even most times, it is meaningless.  Think about that annoying song you can not get out of your head and it just keeps repeating, over and over.  Now multiply that by 24x7. 

But sometimes, it does have meaning.  The issue for us is separating the meaningful from the meaningless.

So, I came home from work the other night and the Little Man comes to greet me with his brothers.  This time, he does not give me the scripted "Hi, Daddy" before he runs off to play.  But instead he says "Little Einsteins" and he tries to push his way past me out the door.

"Little Einsteins."  Meaningful or meaningless?

Initially, I thought it was just a meaningless utterance he made as he wanted to squeeze past me and run outside.  Since he is a flight risk, going out alone is a major no-no.  I was readying myself for the coming battle of wills when it struck me.  He was in my car the night before and left his Little Einstein's character figurines in the car.  He was not mindlessly stating whatever was in his head.  He was requesting the toys from my car.

Here I was ready to play stern parent on him and not allow him to run outside, when all he wanted was to get his toys from the car.  It scares me to think how often that may happen to him.  How frustrating it must be to have such a limitation on communication, to overcome that limitation to verbalize a very simple request - only to have that request ignored - or maybe worse- to be misunderstood. 

Note to Self: PAY ATTENTION!

FAMILIARITY BREEDS......COMFORT?

"Nobody ever died of discomfort, yet living in the name of comfort has killed more ideas, more opportunities, more actions, and more growth than everything else combined. Comfort kills!"     (T. Harv Eker)

"The worst thing you can do with a young autistic child is nothing."   (Temple Grandin)
 
 
 
 
To push, or not to push?  That is the question. If only it were so simple.   So with a "typical child" its easy, right? You lay down a couple unpopular rules about studying, bed time and eating vegetables and every once in a while you allow a little break in the rules as a reward, or for some comfort, or just as "our little secret."
 
Mom says, "We don't watch Sponge Bob."  Mom goes to the store.  Dad promptly puts on the right honorable Mister Square Pants.  (That plan would have worked so well if he wasn't so darn honest.  Dad busted!) 
 
So how is it with our child with "Autism?"  A child whose natural condition seems to be discomfort--trouble finding foods to eat, trouble finding words to say, trouble falling asleep at night. Trouble, trouble, trouble.  A child who left to his own devices would find comfort in the repetitive predictable world of letters, numbers, select TV shows, videos and, in this new era of technology, apps.
 
So, as a parent, where do you draw the line at adding to the natural state of discomfort?  When can you give in?  Should you ever give in? When you give in, are you sending a mixed signal?  Are you causing more harm than good? I don't know. 
 
But, what I do know is this:  We just gave in and we are now the proud owners of at least our 5th set of Fisher Price stackable colored rings!  "How could that be?" you ask.   Yes, our beautiful little 6 year old boy, had the rare sensation of being alone with mom and dad in Target and of being given free reign of the entire toy section.  He thoughtfully walked up and down every aisle and analyzed all of the incredible toys that are destined to be future junk in a box in our basement.  And his choice?  Another set of stackable rings!

With such a sweet look accompanied by a pointing gesture and "Look, there she is!" -- Who were we to deny him the pleasure of that comfort?  I guess we will pick and choose our spots.  Some kid at some future yard sale will be very happy with that purchase.

YOU CAN SAY THAT AGAIN

“Its déjà vu, all over again”
-Yogi Berra

One of the greatest pleasures of youth (or in an immature not-so-youthful person such as me) is that time honored tradition of mocking someone by mindlessly repeating what they say. Think about it. You can remember when you did it and when it was done to you. And it always follows that same predicable script:

Torturee: Are you repeating me?
Torturer: Are you repeating me?

Torturee: Ah, c’mon stop it!
Torturer: Ah, c’mon stop it!

Torturee: Please, cut it out.
Torturer: Please, cut it out.

Torturee: I am stupid.
Torturer: I know you are.


Ahhh! The joy of it never gets old.

But, now imagine that the only way you can communicate is through such repetition. The only way to meaningfully communicate your basic needs, fulfill your strongest desires and display your true emotions is to repeat what someone just said to you, or to try to recall something someone said to you on a similar topic in the past and try to use it now. Now you have a lay man’s understanding of what is known as ECHOLALIA and you can now imagine our little man’s primary method of communication.

You can type the word "echolalia" in a search engine and get all of the scientific gobbledygook, but where is the fun in that?! Some things you just need to experience for yourself.

As we have experienced it, echoalia comes in many shapes and sizes. Sometimes its just immediate and mindless repetition of the last thing that was said. For instance, in a moment of self-aggrandizement, there have been reports that our son may have immediately repeated the phrase “Daddy, you are the man!” or “Daddy, you are the king of the universe.” But, under the Fifth Amendment, I can not comment on the truth of those reports.

We also have experienced the delayed, mindless borrowed from TV echolalia which, in our version, comes replete with an almost uncanny ability to sound like the original source. Image our surprise when we overheard our little boy playing in the other room saying in most feminine voice: “Hi, I am Julie Clark founder of the Baby Einstein Company” or announcing in the perfect TV announcer voice that “Chuck E. Cheese’s is a proud sponsor of PBS Kids.”

But, in our experience, echolalia is not just mindless repetition, but can also be a mechanism of meaningful communication and provides our little boy with an ability to convey what he needs in words that he might not otherwise have. He has a truly fascinating ability to go back in his mind’s eye and grab any experience or situation in the past and bring it out to convey some thought, some desire, or some emotion in the present. Best part is, as he has grown and learned more, he has been able to change the words to fit the situation.

One of our favorites de jure is “No, Max.” If you are familiar with the kid’s TV show, Max & Ruby, you know Ruby is the “responsible “ older sister who is constantly trying to put the buzz kill on the younger Max’s master plans. Max will say what he wants: "Water" and Ruby promptly shuts Max down with a familiar cry of “No Max, you can’t play in the water…”

Now, any time our little man has a strong desire for something, which he knows he probably can’t have, we hear him say both parts:

“Cookies! …….No, Max. No Cookies”

“I Pod! ……No, Max, no iPod”

Priceless.

WHERE ARE WE HEADED?

It depends on what the meaning of the word “is” is?

-William Jefferson Clinton

One of the most difficult questions we are asked about our little man and his current condition is: How is he doing? And the real answer is: it depends on what you mean.

The short answer is: He is doing well. As a parent, I guess the two things I want most for my children are health and happiness. Fortunately, he has both. His condition is not life threatening. It does not shorten his life expectancy. And, most importantly, he is a very, very happy child who admittedly has difficulty trying to coexist in a confusing world full of people who see and experience things differently than he does. The challenge is in balancing what the world expects of a child of his age, against those things which bring him great happiness.

The long answer is: There are really good days and really bad days. And much like Ms. Gump’s box of chocolates, we really never know what we are going to get.

On the best of days, we see a happy, engaging, effervescent, intelligent and unique little boy who is inquisitive and absorbs and comprehends vast amounts of information beyond his years. On those days we know that he will be a spectacular, independent and successful young adult.

On the worst of days, we see a frustrated, removed, uncomfortable and challenged little boy, struggling with unknown physical and mental complexities, who can not find simple words to communicate his basic needs. On those days, we fear what will happen to him when he no longer has his parents to intervene and translate life for him. I must admit, that fear can be paralyzing. (Note to self: remember to write about the two blessings that are his typical siblings).

Fortunately, those thoughts are few. We are generally able to take each day as it comes. And today, as I sit here envisioning this sweet little boy, wrapped in the arms of his two wonderful brothers, with a smile ear to ear, living in the moment, I know there is a lesson for me too:

It really is all good.

OTHER SIGNS

When you have eliminated the impossible, whatever remains, however improbable, must be the truth.

-Sir Arthur Conan Doyle (Sherlock Holmes)

It is very difficult trying to remember what our early signs of Autism were. I do recall that even as we began looking through the early frantic checklists, we were never quite sure. Some of the little quirks that raised questions were often times short-lived and ultimately seemed harmless. Truth be told, our Little Man was happy, sweet, energetic, pleasant and easy going. He was (and is) a pleasure. Bottom line: the guidance provided by the Internet is no replacement for a professional evaluation (and the sooner the better).

Listed below are some of our other "early signs." But, I must again say, that many signs which may be suggestive of Autism are also present in a more typically developing child.

OTHER SIGNS

* Failure to respond to his name.

* Fascination with his reflection. (See footnote below)

* Fascination with his shadow.

* Love of stacking of blocks.

* Early fascination with letters and numbers.

* Strong preference for patterned or repetitive activity.

* Pulling adults by the hand to obtain desired objects.

* Failure to point at desired items either to request or to share interest.

* Seeming lack of fear of new people (no real strong parental preference).

* Walking on his tiptoes.

* Language development in chunks from songs, videos or books as opposed to a more typical progression from a number of single words to multiple words.

* Apparent lack of interest in other children his age.

* Fascination with spinning.

* More responsive to exaggerated/highly animated speech.


Footnote: I intentionally used the word "fascination" in this list and not "obsession" or "compulsion." At the time, his actions and activities seemed within the bounds of the what we would consider to be typical activities of a high energy little boy.

WHAT'S IN A NAME?

That which we call a rose
By any other name would smell as sweet.

-William Shakespeare

Looking back I guess the earliest, clearest clue that our little boy had strayed off of the neurotypical path was that he did not always respond to his name. There were certainly other signs which I will set out later, but the failure to respond to his name was probably the first, clearest one.

Truth is, my wife and I never really noticed. Our little boy was always happy, sweet, energetic, and fun-loving. He was constantly babbling and cooing. He seemed advanced mechanically and physically. But as we approached and passed his second birthday, others noticed. Or, I should say, another noticed. A close, brave loved one mentioned it to me first in passing. If you call his name, he did not respond -- he did not look. The first time it was called to my attention, it seemed to me a meaningless observation that resulted from nothing more that an energetic toddler with better things to do then to indulge the whims of over-parenting. I "tested" him on my own time--with varying success. He responded sometimes, sometimes he didn't.

Then something happened.

The same loved one brought the topic up again-- this time with more urgency. Again, I attempted to shrug it off with a glib reply which conveyed a clear message…I was not concerned about his hearing. And then it came… The lack of name responsiveness was not a concern about hearing, it was a concern about Autism. My crazed Internet research later confirmed that indeed one of the first signs of autism in a young child is the child's failure to respond to his name.

Still, I was not convinced. Unbeknownst to my wife, I covertly started a series of passive tests, calling the little man from different angles, in different tones of voice, at different times, and during different activities. Sometimes he responded. Sometimes he did not. All in all I would approximate that depending on mood, activity and level of animation, he would respond about 50 percent of the time.

As I was going through this process, I searched at length to find the official study to put my mind at rest, one that said it only meant autism if he responded less than 10 percent of the time, or 4o percent of the time, etc... I do not remember if I ever found an answer to the magic number question, nor do I know if one exists. But what I do know now is that my child, who has now been officially diagnosed with autism, responded when his parents called his name about 50 percent of the time, and less often when he was called by others.

I feel it necessary to end this post with a disclaimer. I can think of many, many reasons short of autism that a child would not respond to his name. Off the top of my head I could think of a few: playfulness, obstinance, focusing on something else, busyness, tiredness, failure to hear, problems with hearing, no desire to respond, etc... But if the failure to respond occurs with any frequency or regularity, a flag should be raised. If this applies to you, I encourage you to research further and further and to go back and read my post on early intervention and to call. It can not hurt.