REFLECTIONS ON REFLECTIONS

“Reflect upon your blessings, of which every man has plenty, not on your past misfortunes, of which all men have some”

― Charles Dickens

According to WebMD, the word Autism "comes from the Greek word ‘autos’ meaning ‘self.’ The term describes conditions in which a person is removed from social interaction – hence, an isolated self.”  Some of the features of Autism remind me of another word from similar derivation - Autonomous- “ also derived from the Greek word “Autos” meaning - "acting independently or having the freedom to do so.”

Our Little Man is now 6 years old, and I am continually amazed at his ability and desire to act independently.  From finding and climbing to get to our contraband (videos, cookies, et al), to working the VCRs, to video on demand, to searching Google (which he calls Goggle -- too cute).   If he wants it, he finds a way to get it.  We actually have to lock the bathroom door to stop him from going to give himself a bath without one of us on patrol.

So, here we are several months ago, getting ready to go around the block on bikes. But he doesn't want his bike with the training wheels.  No.  He wants his older brother's bike - training wheel free.  I'm game for an adventure, so I think, sure no problem, I will walk behind him holding onto the seat.  It will be a great new experience. 

It took us about 100 feet or so to catch our groove. And, catch our groove we did.  For a few seconds there, it all felt "normal" or maybe the right word is "typical."  No matter what you call it, as we went down the tree lined sidewalk, I took it all in - the light breeze, the feeling that all was right in the world, and slowly I began to drift off in dreams of more and more of these "what-ever-you-want-to-call-them" moments.  Father and son, riding a bike, playing baseball, going fishing, rowing a boat -- and yes, some day maybe even driving a car. 

Before I knew it, we were almost completely around the block.  That's when it happened.  What is he doing?  Is he taking his hand off of the handle bars!  What the....!?!?!   That's not "normal."  He slowly reached his right hand off the handle bars and began reaching back to the back of his seat.  Swatting.  It took me a moment to realize that what he was doing was not some Autism related trait.  He was trying to swat my hand off the seat.  He wanted freedom and independence.  His actions were saying "Hands off, dad, hands off, I got this..."

Maybe I was intoxicated with the dreams of more and more future freedoms, or caught in the moment, or whatever.  But, I felt it too.  "He DOES have this." And, with a gentle push to give him the right amount of speed I left go of the seat.....And there he went, with me chasing not a step behind..first five...then ten...then fifteen feet.....Until......We literally came crashing back to realty.

What happened?  What calamitous event caused me to have pick the bike up off this intriguing young man and brush the grass and dirt which cushioned his fall?  Autism happened. 

There he was going along beautifully up the sidewalk.  As he passed a car parked adjacent to the curb, he saw his reflection out of the corner of his eye.  I do not know what it is about Autism and reflections, but this man, can almost never pass his reflection, or see his shadow, without becoming preoccupied with it.  This time was no different.  As he passed the car and turned to look at his distorted reflection in the door of the car, he veered up onto a neighbor's lawn, and over onto his side.  If there was any fear of not looking where he was going, it was certainly outweighed by the pleasure he got out of watching himself riding a bike - training wheel free- in that distorted reflection.

Next summer - we try it again.  But, next time its bikes on a cloudy day -- as far away from a reflective source as we can!

BABY EINSTEIN

All truths are easy to understand once they are discovered; the point is to discover them.

--Galileo Galelei  (as quoted in Baby Galileo)

Enjoy the Show!  -- Julie Clark, founder of the Baby Einstein Company

  

Ugh.  Here it is.  The dreaded Baby Einstein post. 

At one point, you would have found no bigger fan of the Baby Einstein series of videos and DVDs than me.  I was always a proponent of buying a new video.  I loved the presentation of classical music.  I loved the introduction to the world of art and science.  And our oldest son really seemed to use the introductions to topics provided by those videos to seek out and acquire more knowledge on topics such as planets and sea creatures.  It really seemed to be a great concept.

Now, if this were a movie, we would slowly fade away from the kids sitting gleefully in front of the TV with an episode of Baby Mozart reflecting in their joyful wide eyes and we would cut to the morning after scene in the movie The Hangover.  What in the world happened and why did we sell all of our Baby Einstein videos on Craig's List?

I have never tried crack cocaine, but I imagine that the effect of that drug on a typical person is in the same category of what happens to our Little Man when he watched Baby Einstein videos.  You would really have to experience his reaction to fully appreciate what I mean.  His energy level goes up to - power-a-small-city levels, his already limited interpersonal interaction regresses, his voice reaches decibels almost inaudible to human ears, and his already constantly moving body- moves faster and wilder than you can imagine.

I can not even pretend to understand the complexities that cause such a strong reaction between our man and those videos.  But I often heard of how hard it is for an addict to give up their compulsions - for tobacco, or alcohol, or drugs or whatever -- how the addict constantly longs for his vice even when clean and sober-- and how easy it is to slip back.  Well, you can add to that list for us --that which is now contraband in our home --  Baby Einstein videos. 

All I know is that to this day, if you give our Little Man paper and some crayons, it is just a matter of time before he writes "Baby Einstein" replete with the mutli-color letters and little hand drawn bespectacled bodiless head of a stick figure that sits up in the corner.  Not to mention the random utterances he still makes about the videos, or the fact that if gets a shot at "Google" his first search is almost always "Baby Mozart."

To be fair to Julie Clark, founder of the Baby Einstein Company, hers are not the only videos banned from our house.  We also had to ban Signing Times and Letter Factory.  [Did you know, every letter makes a sound!?!  Yes, its true!  Really! All 26 of them!]

Long story short, we are no longer Enjoying the Show.

RELATIONSHIP DEVELOPMENT INTERVENTION (RDI)

Two roads diverged in a yellow wood, And sorry I could not travel both…

- The Road Not Taken, Robert Frost.

There are many paths to the top of the mountain, but the view is always the same.

-Chinese Proverb

We are now approaching the one year anniversary of our involvement with a Relationship Development Intervention (RDI) program with our Little Man. I have been hesitant to write about this program so far since, I fear that any explanation of my layman’s understanding of what RDI is, the research behind it, and its long and short term benefits, would not do it justice. Fair to say, we did our due diligence and believed the RDI program would be a benefit for us.

I also realize that many parents of children with Autism have tried this, and many other “treatment” methods and there are many strong opinions out there about the positives and negatives of each. You want to occupy your self for a few hundred hours? Go search Autism treatment methods on the Internet. If you really want to amuse yourself, read the anonymous comments posted at the bottom!

Fortunately, I am not here to enter any debate, or to start a new one, just to relay, in part, our experience.

It would be far too difficult to relay what RDI has been like for our family in one post. So, I expect that I will be posting more and more as we continue on this path. Also, I should say that we are not pursuing RDI as our only way to get after this crazy little thing called Autism. Our Little Man is still enrolled in an Applied Verbal Behavior class though our school district.

So, with the understanding that this is just a partial glimpse into what RDI is, I say this about our experience thus far:

RDI has provided my wife and I with many tools to use to engage with our Little Man in structured activities in such a way to maximize the social opportunities that are presented naturally in those activities. That is a little general, I know. I intend to flesh this out more in the future. But for right now, what I can say is this: my wife and I now have way to structure almost any activity (i.e., making coffee, doing dishes, cleaning up, cooking, recycling, playing puzzles and games, etc…) in such a way where we are genuinely doing them together with the Little Man in way that makes sense to him and in way that he enjoys. Not to mention, we do them in such a way, that he gains understanding through experience of how to engage with others in a joint activity. If there is no other benefit of RDI, it has enabled us to pull that Little Man, from time to time, out of his preferred removed repetitive world and into the activities of our world where we can enjoy the discoveries of life together.  For that benefit alone, it has been worth it!

More to come.

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.