Friday, December 30, 2011


If I could travel back in time and say anything to myself the minute before you were conceived, I would hide in the shadows and say nothing. I would not change a thing.


Life: It is about the gift not the package it comes in.

-Dennis P. Costea, Jr.

I initially started this post with the thought of writing about one of the most difficult challenges Autism presents for parents: Unpredictability. Skills that appear to be mastered one day, may be forgotten the next. Language that was flowing one day is absent the next. Things that bring joy one day cause frustration the next. One day we see beautiful blue eyes engaging us. The next, we are lucky to catch a glimpse of those beauties as he spins, twirls and jumps not realizing we are there.

But today, I can not focus on the challenges Autism presents to me or my wife, or our other beautiful little boys. No. Not today. And hopefully not again any other day. Maybe it’s the dawn of the New Year. Maybe it’s the bright rays of sun pouring in the window. Maybe it’s the refreshing chilling breeze that greeted me outside toady. Whatever it is, I feel like today I stepped back from the trees (which represent all of the curve balls Autism has thrown our way) and saw the forest (which is our life). What a beautiful forest it is!

Last night, I took the Little Man to bed. The plan was to tuck him in, give him a kiss, and sneak out to whatever else I thought was so important to waste hours of my life doing. Right now, our bed time routine consists of the LM falling asleep alone in his parents’ bed (a.k.a. the “white bed”)– then being air lifted to his own bed (a.k.a. the “blue bed") when sleep beckons his parents. But as I laid him down, gave him a kiss and turned to walk away he said “Where is the Daddy?” Clearly he did not want me to go. So, I lay down next to him and sang him a song (with a voice not even a mother can love). Nine hours later (thank you wife) I awoke with that little angel still sleeping next to me. It is so serene to watch him peaceful and asleep. I could have stared at him for hours.

He woke when I was in the shower getting ready for work and went down stairs. As I finished getting ready, I heard him call, “Daddy, Daddy, Where are you daddy?” You would not believe how long of a ride it has been to get to that point. First, wanting my wife and I to be with him when he is playing and, second, taking the challenging step of actually asking us to do so. I ran down stairs to find him sitting in our Lightening McQueen tent. “Yes, buddy, what do you want?” He responded with a line stolen right from Green Eggs and Ham, “Would you, could you in a car?”

He wanted me in that car shaped tent with him – and was asking the best way he knew how. The perfect way. Work could wait a little – so I got in. What a way to start the day – me, the Little Man, the characters from Yo Gabba Gabba, the Backyardigans and Charlie and Lola enjoying a morning in a tent.

Roller Coasters are daunting. They can be imposing, loud, scary and unpredictable. They require you to let go of your control and to trust in others. They are not for everyone. But, once you are on them, and let your self go, they can be fun, exhilarating, and create memorable experiences.

Time to stop focusing on what can go wrong and enjoy the ride!

Wednesday, December 28, 2011


Sometimes we miss happiness by looking too far for things nearby.


One of the things you read most about raising a child with Autism is that although many such children have difficulty communicating with words, they often communicate with their actions. For some reason, our Little Man, who has a vocabulary which is clearly beyond his years, does not see those words as having the primary purpose of communicating with others. He uses his words primarily for the purpose of humoring himself. But the words are there. The knowledge and ability of how to use them are there. But, for whatever reason, he chooses other methods of communication first. If he wants you to open the door to the basement, his fist step is usually to grab your hand, walk you over to the door and place your hand on the knob. On good days, that is sometimes associated with a calmly voiced “Downstairs.” On so-so days, it is voiced with really loudly yelled “DOWNSTAIRS!” and on other days – it is accompanied with no words at all.

The other day, I was doing a little cooking and he came over to grab my – possibly salmonella contaminated – cooking hands to lead me to a desired object. Obviously, I did not want him to grab my raw chicken handling hands. But, I was afraid that he would not understand my reaction of drawing my hands back and away from him. So I felt the need to communicate with him somehow. So as I pulled my hands back, I bent forward, leaned toward him and said “use your words.”

I don’t know why I picked that phrase. We never used it with him before. As far as I know, it is not something any of his therapists or teachers use with him. I think I was just channeling something I recall from some crazy parenting book about handing the tantruming that usually accompanies the terrible twos. Whatever the reason, that is what I said.

Then, something strange happened. He looked at me and said “Daddy, I want to go downstairs, please.”


Just like that, we have opened a new avenue to verbal communication. Since that fateful event about two weeks ago, whenever the Little Man exhibits signs of discomfort, or aggression, or sadness, my wife and I say “use your words.” Right now I think we are over a 75% success rate of having him respond with exactly what it is will make him feel better. In fact, as if often the case with such amazing little breakthroughs, I think this might ultimately help him voice his needs without the need of the “use your words” prompt. In fact, just last night, as I was wrestling with him to try to get his pajamas, I thought he was fussing because he did not want the jammies on. I was wrong. Without prompting, he stopped fighting, looked me right in the eyes and said “Daddy, I want to go poopie on the potty.” And, so he did.

Obviously meaningful verbal communication is only part of our puzzle. But we feel better having the avenue of communication available to us.  Hopefully this mini-breakthrough leads to more!

Sunday, December 25, 2011


Tidings of Comfort and Joy!

The Little Man admiring his reflection in a Christmas ball.

Thursday, December 22, 2011


Sometimes I sit up late with my thoughts, reluctant to fall asleep and leave my thoughts alone by themselves. 

~Robert Brault

Sleep Issues (Part 1)

Where do I start?

Our Autism sleep issues fall in two categories:  1) Falling Asleep; and 2) Staying Asleep.

Topic de jure:  Falling Asleep.

Before Autism was anything more to us than a - it happens to other people but not to us - kind of thing, our Little Man had trouble falling asleep.  I do not really remember when it first started, but it was well before we felt the need to call Early Intervention.  We used to call the little fella "Thunder" since you could usually tell how far he was from sleep by counting the minutes between his giggly, babbly outbursts. 

We tried it all- the cruelly torturous Ferber method; strict bedtime routines; long warm baths; laying next to him, not laying next to him, white noise, silence, long car rides, etc., etc., etc...  We even ventured a try at a melatonin supplement.  Somethings seemed to work for a time, then not so much. No rhyme or reason.

I am now sadly starting to believe that our LM is afraid of the dark, which given his communication impairment, is something he can not tell us.  Why do I think that?  Perhaps it is because of the death grip headlock he puts on my wife or me if we try to roll out of bed  (or as he calls it the "white bed" which is not to be confused with the "blue bed" the "rainbow bed" or the "buzz bed.").

Fortunately or unfortunately for him, he has a father that is somewhat of an insomniac himself.  So I empathize with the fact that when you are not ready to fall asleep - lying alone in the dark sucks!

In any event, I have come to this inescapable conclusion: You do not tell Autism when to sleep.  It tells you when its ready to sleep.   I hereby challenge the SuperNanny to prove me wrong on that!

To think otherwise would cause me to admit that which my wife already knows:  I am insane (in accordance with Einstein's classic definition of insanity).

Tuesday, December 20, 2011


These are only hints and guesses,
Hints followed by guesses; and the rest
Is prayer, observance, discipline, thought and action.

-T.S. Eliot

It is funny how much we rely on the ability to communicate. Our "typical" three year old was having a difficult time falling asleep 2 nights ago. Tossing. Turning. Cranky. I went in the room and, perhaps in a slightly exacerbated voice, asked “What’s wrong with you.” He grabbed at his right ear and responded “My ear hurts.” And just like that – the question was answered. A little Motrin and a doctor visit later, we have an infected ear (or two) and some antibiotics. Other than the question and answer, we had no warning. No fever, no sluggishness, no loss of appetite. He was otherwise his terrible twoish self. In other words, if he did not tell us we would not have known.

Cue a light blue puzzle piece.

I have a new definition for Autism:

Autism: (n.) A cruel guessing game in the style of twenty questions, where no answers are ever given to the questions – so there is almost no way of ever knowing if the guesser is even close to the correct answer. Often used to torture parents.

Fortunately, those of us on this life-long reality show of Autism, are blessed with people who have made their life’s purpose to discover the Rosetta Stone of Autism communication, which can help us translate the non-verbal cues we see.

We are in the midst of a truly enlightening breakthrough. Our Little Man lives his life in a near constant state of high anxiety. Sad to say for a six year old, I know. It is something that has been so difficult for us to figure out, given his severe communication impairments. But, thanks to those who have experienced children like our Little Man, we are coming to grips with what it is and how to best help him deal with it.

For a long time, our Little Man had no problem getting on the school bus. We had a nice little morning routine, which would, most days, end with him skipping to the bus with mom. Then, we hit a rough patch. At the start of this school year, after a few rough nights of sleep (post on sleep to follow later), he was vehemently opposed to getting on the bus. We had no idea why. It was like a switch flipped. He had more difficulty sleeping. He was slow to get out of bed. He would refuse to get out of his pajamas. More then once we had to cancel the bus and more than once we had to take him back off the bus since he would strongly refuse to allow the seat belt to be buckled.

Yesterday, I “won” the battle of the wills and was able to get the seatbelt on him. But what did I win? I got a crying young child to sit against his will on a bus he did not want to be on. Congratulations, right? As I walked off the bus, I questioned it all – my parenting, our lifestyle, the school, the bus, etc. To what end?

Thankfully, we do not live in an Autism vacuum and, ours is a road that is too well traveled these days. There are so many great parents, teachers, therapists, blogs and other resources to consult. From that came a simple suggestion- prepare a checklist of what he can expect in the morning – Wake up, Bathroom, Get Dressed, Breakfast, Brush Teeth, Put on Coat, Get on the Bus. We are not (yet) big chart people, but we needed to try something short of Benadryl.

Since this post is getting long in the tooth, I will cut to the chase. It worked BEAUTIFULLY. When we first introduced the chart this morning, he saw the bus was the last thing, and immediately said “No.” But we gave him a pen, and as he completed the tasks, he put an “x” in the box. The morning ended with him skipping hand in hand with mom to the school bus.

And all was right with the world!

Thursday, December 15, 2011


Be patient toward all that is unsolved in your heart and try to love the questions themselves like locked rooms and like books that are written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will find them gradually, without noticing it, and live along some distant day into the answer.

 ~Rainer Maria Rilke, Letters to a Young Poet

'Where is the 'Grocery Store?"  Or, maybe the better question is "What is the 'Grocery Store.'"

As I sit here today, right now, my answer to that question is this-  The "grocery store" is not a destination, but a process whereby one drives seemingly aimlessly around their neighborhood in a car, with no perceivable destination, only to return home sometime later with nothing to show for it but a lighter gas tank.

Allow me to explain.

In a previous post, I mentioned how our Little Man often borrows phrases from movies, books or songs to help him find words he would not otherwise be able to muster.  For example, if he wants me to give him a piggy back ride, he will come over to me and say "Hold on tight, cause here we go..."  borrowed straight from The Little Einsteins.  

But, it is not always about the words themselves.  Sometimes, the words he borrows are meaningless, but instead he is trying to convey the emotion with which those words were stated.  Case in point:  For a period of time, when he was really upset about something, our Little Man, with tears in his eyes, would yell the phrase: "A Yellow Lamb." For the longest time we had no idea where the phrase came from or what it meant.  We simply knew that this mysterious yellow lamb only appeared in moments when he was greatly distraught. 

Months, or maybe even over a year later, we had on Sesame Street, and saw a Kermit the Frog and Don Music clip (linked below) where the clearly upset Mr. Music screams to the little green reporter "Lambs aren't yellow.  I mean who ever heard of a yellow lamb!?"  And viola!  The Case of the Yellow Lamb is now closed.  It was not the words that he borrowed, but the emotion they conveyed.  Intriguing. 

We are now onto a new mystery.  At certain times, when he is very tired, cranky, and upset, but not desiring to go to sleep, our Little Man will ask us to take him "Bye-byes in the car to the grocery store."  It has been a very long time since the request to go to this mysterious "grocery store" was first made in a tearful voice.  But we have never discovered that elusive place.  It was not our supermarket, or Target on Wal-Mart, or any of the other places we have taken him when the request has been voiced.  So, we have concluded that the request is not about the place, but about the emotion.  It only comes up when he is tired, cranky, upset and not quite ready to go to bed.

So, when the request is now voiced, we take him in the car, drive him around for a bit, and bring him back home.  Seems to do the trick.  When we come back, he is calm and ready to call it a night.  Tricky thing is trying to tell his younger brother that going "Bye-byes in the car to the grocery story" is NOT the same thing as actually going to the grocery store.

Oh, how I wish Unsolved Mysteries was never cancelled!

(yellow lamb emotion at 2:22)

Wednesday, December 14, 2011


...sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

-Julia Bascom, The Obsessive Joy of Autism


A must read:

Tuesday, December 6, 2011


“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!


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.


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.

Thursday, December 1, 2011


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


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.