Thursday, April 5, 2012

E is for Easter and Existence


Cogito ergo sum ("I think, therefore I am") - Rene Descartes.


What then do you call your soul? What idea have you of it? You cannot of yourselves, without revelation, admit the existence within you of anything but a power unknown to you of feeling and thinking.  -Voltaire
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As my family prepares to celebrate the Easter Holiday this weekend, it has really caused me to reflect on our earthy existence.  I have always considered myself to be some sort of sub-amateur, wannabe philosopher.  Where did we come from?  Why am I here?  What is the meaning of it all?   Over the years, I have thought long and hard about how to introduce the topics of life, death, and religion to my children.  It has always been my hope to share with my children what my views are, but to also encourage them to question and search for answers on their own – all while being supportive of where their views, if well thought out, ultimately diverge from my own. 

Whenever I ponder my existence, and envision my little boys someday possibly mulling over their own, I cannot help to stop and think of the Little Man, of Autism.  I cannot help but to wonder if he will ever be able to understand and appreciate topics such as life, death, and the existence of a higher power. Don’t get me wrong, he is 6 years old – soon to be 7—and I do not expect him to think over such topics in any detail any time soon.  But, it makes me feel empty to think that as a result of complex things going on in his body, beyond his control, he may never understand or appreciate what it means to be alive – or what it means to be not alive.

But, I guess this is all really a topic for another day, or maybe even another decade.  I have gotten this far with not worrying too much about the distant future and to try to focus on that which makes us all happy today.  

Wednesday, April 4, 2012

DUCKDOG



Big D little D what begins with D?
Donuts and a Duck Dog D-D-D.  
- Dr. Seuss


When we remember we are all mad,
the mysteries disappear and life stands explained.
- Mark Twain



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There was a time in the earliest portion of our Autism journey where the Little Man never requested anything. Never.  As we went through the Early Intervention process, I remember my wife saying that one of the things she wanted so badly was to be in a toy store and have the Little Man ask for a toy – just like his big brother.  It took a long time for us to get to that point.  [N.B. Given his current passionate requests, I think my wife has since come to reconsider that wish J].  But in the early days, simple requests were big, tears of joy inducing, deals. 

Did you ever hear a child say something wrong, and it was just too cute to correct?  Something that was just so endearing, you actually started using that wrong word?

As I mentioned before, our Little Man is a letter-aholic.  So, naturally we have books and books and books about letters.  One of our old favorites is Dr. Seuss’ An Amazing Alphabet Book.  Say it with me: “Big A Little A, what beings with A? Aunt Annie’s Alligator, A-A-A.”

So, one day early on I take the Little Man and his older brother out for the morning and do the Dad-is-my hero type of thing: Treats from Dunkin' Donuts!  Glazed for the Little Man, strawberry frosted for the slow eating eldest.  A few minutes later, after the glazed was devoured, I hear the Little Man whining in the back of the car.  "What's wrong," I asked, not really expecting a answer.

"Daddy, I want Pink Duck Dog, please."  He was eyeing up the circle of pink-frosted goodness being held by his brother.

Right out of Dr. Seuss.  It was so unexpected, so perfect, so beautiful.  I actually went back to get him one too.  To this day, we still call the strawberry frosted doughnut the Pink Duckdog!

Tuesday, April 3, 2012

A Tale of Two C's

It was the best of times, it was the worst of times...  Charles Dickens, A Tale of Two Cities


The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled.  For it is only in such moments, propelled by our discomfort, that we are likely to step our of our ruts and start searching for different ways or truer answers.  
- Unknown
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Complexity
The diagnosis of classical autism (which our Little Man has been given) is just one of the many diagnoses that fall under the umbrella of what they call Autism Spectrum Disorders or ASD.  So, Autism is a "spectrum disorder."  What does that even mean?

As I meet more and more families under this large tent of ASD, and read about more and more families affected by it, I am continually amazed at the almost complete diversity among those with an ASD diagnosis.  There are some who are non-verbal and some who are hyper-verbal.  There are some who are hypo-senstive to this or that and others who are hyper-sensitive to that or this.  And there are even some where ASD is but one set of challenging acronyms the person must deal with (ADD or ADHD or even others) 

The graphic depiction of ASD as a puzzle piece is amazingly apt.  But the puzzle alone does not convey the complexity of ASD. Imagine doing a puzzle where the pieces are given to you one at a time over a period of time-with no rhyme or reason-  (no, you can’t have the outer edges first) and you have no idea what the final picture will look like. 

Now imagine that no one else has the exact same puzzle.

I do not envy any of the truly amazing people who have dedicated a substantial portion of their lives in attempting to help families put their puzzles together.  But, I thank God every day for them!

Yes, ASD is certainly complex.

 Clarity
As if the diversity of those falling on the Autism Spectrum does not make ameliorative efforts complex enough, you can add to that the fact that even at the individual level the severity of the impairments can swing dramatically within the same day. 

For our Little Man, we often discuss his level of “Clarity.”  He ranges from appearing completely disabled – where he is lost in a fog of his body and mind conspiring against him to make him physically uncomfortable and mentally unable to process routine daily activities – to amazingly “with it” where he is in-tune with his surroundings, engaging, effervescent, and, most importantly to my wife and I, happy.   

I love the text messages from my wife when she writes something like… “those beautiful blue eyes are so clear today.”

I am so thankful I live today, where the beauty of modern communication and technology make it possible to read about families like ours around the world who have had some luck in putting their puzzles together and can share ideas to help us achieve more clarity.

Monday, April 2, 2012

B IS FOR "BOOKS BOX"

“The more that you read, the more things you will know. The more that you learn, the more places you'll go.”


-Dr. Seuss, I Can Read With My Eyes Shut!
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Our Little Man has a truly amazing ability to overcome his Autism-induced communication impairments and to come up with unique ways of communicating what exactly it is he wants.  Here are a few of his unique phrases from the last few days – along with the accompanying translation:


“Hold on Tight ”            - Piggy Back Ride.
“Bag Planets”                -The most recent set of planets we purchased for him (yes we have multiple sets)
“Sunscreen Feet”           - Foot massage with baby oil (no you can't have one too)
“Nunchuck”                   - The magnet which unlocks the entertainment center.

I mentioned some of this before in my prior post about our quest to find the mysterious “Grocery Store.”    (See: Grocery Store Post) We recently had to add a new phrase to our investigative files:

“BOOKS BOX.”

The Little Man comes over to me the other night and says:   “Daddy, I want to go bye-byes in the car to the Books Box.” 

When he first uttered that request, I thought I misheard him, or that he might be pronouncing a word wrong, so I had him write it down on our chalkboard.  Sure enough Books Box was what he wanted.    Really?  As we learned from the fact that going “bye-byes in the car to the grocery store” does NOT mean he wants to go to the grocery store, I figured “Books Box” probably had nothing to do with books.  But he was persistent.  So much so, he went over to get his shoes and coat on.  We were definitely going somewhere.  But where?

The easy guess was the library, right?   I know he knows what the library is, and how to say that.  But, still I wrote on the chalkboard:  “Do you want to go to the library.”  He happily grabbed the chalk and wrote “YES!”  Big Problem.  It was 9 PM – and the library personnel had already turned into pumpkins. 
Fall black plan- Bookstore. 

So I write: “Do you want to go to Barnes & Noble.”  I was really not sure he knew what Barnes & Noble was.  He responded with a chalk-written “YES.”

And off we went that night…and the next…and 3 of the next 5 nights.  We have created a monster. 

But, I have to admit, it is so sweet and cute now when he asks specifically to go “bye-byes in the car to the Books Box Barnes & Noble.”  It’s almost impossible to say no.  He asks every day and every night.  

Buy some stock in Barnes & Noble!

Sunday, April 1, 2012

A IS FOR ALPHABET

“Some people think only intellect counts: knowing how to solve problems, knowing how to get by, knowing how to identify an advantage and seize it. But the functions of intellect are insufficient without courage, love, friendship, compassion, and empathy.” 



-Dean Koontz


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Before there was Autism in our lives, there was the Alphabet.

Back when Autism was nothing more to us than a "Ten Minutes to Wapner" reference from the movie Rain Man, our Little Man showed an an amazing interest in and aptitude for letters. Well before he was two years old he was reciting the alphabet phonetically.  At the time, we were amazed at such a demonstration of  intellect at such a young age.  However, in retrospect, we should have been more concerned when that beautiful little boy woke from his naps - not calling for mom or dad - but reciting a letter of the day along with the sound it makes.  "The "A" says "Ahhhhh."

We are now almost 4 years removed from D-Day (the Date of Diagnosis) and his love of the Alphabet has not subsided.  He can still get lost in letters.

But when life gives you the alphabet, you make alphabet soup right?

Over time, my wife and I have been slowly able to discover ways to use his reading and writing abilities to get around his communication impairments.  Spelling names in sign language helped him learn and remember the names of relatives.   Hand written multiple choice questions have helped us understand his needs and desires. Written lists have helped him understand and prepare for what his day will entail.  Fill in the blank sentences have helped us learn what he is thinking.  None of it is perfect -- all just pieces to the puzzle.

Some day I will write more about the difficult choice my wife and I made when we decided to have another child after our middle son was diagnosed with Autism.  The risk of having second child with Autism is significantly greater when you already have one child with Autism.

But, I will tell you this...one of the happiest days of our lives was when we held up the letter "A" to our typically developing three year old little baby boy and asked him "What's this?"  To which, he responded "C?"


Wednesday, March 28, 2012

BLOGGING FROM A to Z APRIL CHALLENGE



The most difficult decision is the decision to act, the rest is merely tenacity. 
 -Amelia Earhart.
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I always wanted to blog more -- you know in all of my free time  --  So, I have signed up for the Blogging from A to Z April Challenge.  Nothing like a little peer pressure to give you a nice swift kick in the patootie.  They recommend posts of 400 words or less. HA!  I don't think I can sneeze in less than 400 words.  Let's see how this goes.

(I actually had look up patootie.  It showed up on Google like this:

pa·too·tie/pəˈto͞otē/

Noun:
  1. A girlfriend or a pretty girl.
  2. derogatory. A person's or animal's buttocks.


So if I call you a "patootie," you are either a pretty girl or an animal's buttocks.  You will never know...


THE NEW NORMAL -or - I AM A CLOWN FISH

Most of the important things in the world have been accomplished by people who have kept on trying where there seemed to be no hope at all.  - Dale Carnegie

Every day is a chance to try harder, live better, dream bigger, and not forget to have a little fun.  - Bruce Littlefield 
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All I know about Marine Biology I learned from Disney’s Finding Nemo.   Truly.  You know the scene.  Marlin and Dory –on their path to find the East Australian Current -- find themselves trapped within a colony of jellyfish. As Marlin attempts to guide Dory through the dangerous stinging field of jellyfish tentacles, he drops a little knowledge on his Blue Tang Fish companion.  Clownfish are resistant to the sting of jellyfish due to their repeated exposure to the sting of sea anemones.  That's right – clownfish are routinely exposed to the sting of sea anemones where they reside, so their skin secretes a thick layer of mucous which stops stinging cells from reaching the surface of their skin and inflicting damage. 

All of which leads me to this… 

A few weeks ago my wife and I embarked on a Grand Adventure –we took all 3 of our young gentlemen to a child’s birthday party at a friend’shouse.   Not just any house, but an aspiring Martha Stewart style, knick-knack filled, a place for everything and everything in its place house. A place where children shall be seen and not heard.   This Autism family’s greatest nightmare.  We often decline invitations to parties such as this in somewhat unfamiliar environments, or we split up our army of young soldiers with the "Autism regiment" remaining at the home base as the “Typical regiment” goes to the party.  But, every once in a while we try to keep the army together to experience such “joys” together as a typical family would. 

We’ve been at this long enough now that my wife and I have these environments down to a science.  We are both on extra -super- mega high alert. (Okay, I may be taking a little liberty by saying we are both on the same level of alert – my wife has eyes in the back of her head, which I have not been blessed with).  We engage in a unspoken, unplanned dance of passing responsibilities.  One of us always on the trail of Autism and guiding the Little Man away from this breakable or that contra-banded food item.  Always intervening or explaining to this adult or that child that the Little Man is not ignoring them, etc.

Is it ever possible to be social when on Autism duty?  I guess it depends on the social partner.

As I was chasing Autism through this tchotcke filled house, I had a rare moment of respite.  The Little Man plopped down on a sofa in an empty room, not far from the restroom.  I did not use his respite for a moment of rest.  No way.  I surveyed the scene and strategically positioned myself in anticipation of the next stage of weaving in and out of the party go-ers repeating “excuse me” and “oh no don't touch that.” The next round of intervening and explaining, explaining and intervening.

As I stood there going over the plan for the next phase of the battle, I met a new father waiting in line for the restroom.  He has a beautiful brand new little baby, not 1 month old.  His first. Sleeping pretty well so far.  He feels bad that his wife has to go through the physical rigors of breastfeeding and wishes he could do more for her.  He and his wife could not be happier.   During our conversation, the Little Man became active in a “hey look at me I have Autism” kind of way.  A kind of maniacal laugh, a jolt of energy, a jump up onto the sofa, perhaps a little flailing or flapping,  some loud repetition of some TV show or something.  It was loud enough that my wife came in from another room to make sure I had not abandoned by post.  I had not.  She looked at me with a curious – why are you not intervening or explaining to this stranger what is going on- kind of look.  But truth be told, through his little outburst, I never batted an eye.  That is who he is.  That is how Autism manifests itself in him.  That is what our daily life is like.  I see it frequently.  Too frequently.  The nice young father, to his credit, did his best to ignore it too.  He gave a fleeting sideways glance, but it certainly was strange to him.  To that, I was oblivious.  I used to be so sensitive to how the manifestation of Autism appeared, and to try to intervene or explain the manifestation. But the Little Man was safe and smiling and it just seemed normal.

When did it happen?  When did I develop this thick layer of mucous that has made me immune to the sting of Autism?