ROLLER COASTER

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.

-Me.

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

-Dennis P. Costea, Jr.
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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!

STRANGE DISCOVERY

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


-Anonymous
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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.”

EUREKA!

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!

MERRY CHRISTMAS!

Tidings of Comfort and Joy!
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The Little Man admiring his reflection in a Christmas ball.

WHEREFORE ART THOU SLEEP?

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

~Robert Brault
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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).

ENIGMA

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

-T.S. Eliot
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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!

DONDE ESTA EL GROCERY STORE

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
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'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)

THE OBSESSIVE JOY OF AUTISM

...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

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A must read:

http://www.shiftjournal.com/2011/11/30/the-obsessive-joy-of-autism/