Thoughts of tomorrow

Today we made a morning stop at the blood lab to check all Sam's levels because his seizures persist. We're trying to figure out the culprit - low sodium levels caused by one of the meds or perhaps he isn't at a therapeutic dose for the new medication. Or maybe this isn't the right medication at all. 

Being a Saturday morning, the hospital was quiet and easy to maneuver. While we waited, we heard, "You can come in, Maria" to a family accompanying their grandmother. Sam turned to them with a big smile and sing-songed at them, "Mar-ri-ia" to their delight.

Sam greeted the two phlebotomists with a big smile. It took him a while but he answered their questions about his name and date of birth. Everything went smoothly and Sam jumped up and announced it was "treat time." He would like a chocolate chip cookie, thank you very much. The staff waved goodbye and wished us well. 

Next stop, coffee stand for reward time. Sam, still sporting his smile chose a chocolate donut instead. The person nearby looked up and began smiling too.

When I noticed I had forgotten my cell phone we headed back to the hospital - the security folks help us and took a moment to chat with Sam. On our way to the door, Sam suddenly turned, calling, "Hello Ethan!" to a man to our left. The man glanced over and I said, "You must look a lot like someone named Ethan because my son is very eager to greet you." He stopped to talk for a moment to Sam and then lamented to me that he'd rather "look like Robert Redford." 

As I drove home, I reflected on how positive the morning had shaped up. Sam is so much more comfortable - even interactive - with people these days, in spite of his communication challenges. He has an easy smile that seems to put people at ease. 

As with other mornings like these, the crystal ball of Sam's future tells me to worry less about his happiness when I am no longer part of his life. He will carve a path and find happiness wherever he is. It is his nature. 

That is only half of the story.

Later this morning I watched Sam become agitated at home. The familiar roars and number yelling surfaced as he ran around the house screaming and crashing into walls. I sat with Sam as he scripted random lines and verses until he finally calmed down enough for me to figure out his stomach was upset. The earlier donut had come back to haunt us. 

The happy guy I described and the out of control young man in the last paragraph are both part of the Sam I live with daily; the Sam I love. 

Happiness isn't the only measure of Sam's future success. While I may have confidence that Sam will find happiness where ever he goes, without the ability to communicate in moments of duress, Sam's safety will alway be at risk. His health will be at risk. And I have no solution for that. So while I don't really care at this juncture what caused his autism or that autism is part of our lives, I care passionately about treatments that might one day ensure his safety and provide him inner peace.

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The Yellow Chair

“Bahamas.”

“What did you say, Sam?” I asked. Sam plopped on my bed in his usual position and responded definitively, “Bahamas.” I glanced at his iPod to see if he was watching something about the Bahamas. He was watching Blues Clues - something about Side Table wanting to be in a show. Nope. Nothing about the Bahamas.

“Bahamas,” Sam said again, making it clear this was the topic he wanted to discuss. Sam had never mentioned the Bahamas before. I didn’t know he knew the word, let alone the place. That mattered little. When Sam wants to talk, we talk.

"OK. The Bahamas." I said. "What about the Bahamas?" Sam responded, "White sandy beaches. Turquoise water."

I laughed and said, "Yes you are right. Are you a travel agent?" Maybe he had seen some TV ads or a video on YouTube. "Tell me more about the Bahamas," I asked.

Sam added in rapid succession: 

"Big window. 
Blue slide. Yellow slide.

Yuck in the water.

Bubble in the water.

Under in the sea.

Under the bridge.

Yellow chair."

Wow. A lot of information. I had a feeling it related to something but I didn't know what. Why were the Bahamas on Sam's mind? Sam had visited the Bahamas two times, true, but the last trip was well over ten years ago. I'd never seen evidence he remembered back that far. So what was this sudden interest in the Bahamas?  Where did a yellow chair fit in? 

I tried to get Sam to chat a little more but for Sam, the conversation was over. He had turned his attention back to Side Table and her problem about getting a chance to perform in the show. 

This morning something clicked. I had recently scanned some photos and loaded them onto my phone. Sam always plays with my phone. Buried in with the recent photos was this:

The yellow chair. Taken in the Bahamas when Sam was five. A few photos later was this:

Taken under one of the bridges in Atlantis, the fish blowing bubbles.

Though I only had these three pictures, it was all there. All of it: the yellow chair. The blue slide and the yellow slide. The bridges. Walking "under" the sea. The fish and their bubbles. Everything. Even "yuck in the water" (seaweed to the unenlightened). Sam was describing a trip to Atlantis we’d taken many years ago. A trip I haven’t mentioned to him in many years. And he wanted to share his memories with me. Wow. Lesson learned. Sam remembers. 

Wow. Wow. Wow. And wow. 


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A busy June weekend

It was a pretty big weekend. We broke in a new behaviorist, Sam participated in an art show and there was a wedding.

First the behaviorist: We are delighted to have the extra set of eyes and ears and hope he can help untangle the communication behind Sam’s behavior. Collecting all the data is tedious; we repeatedly run through the litany of questions. Still we know it will bring us to a better place.

We’re off to a good start. Sam has been pretty accepting of this intrusion into his life. The behaviorist is armed and ready for anything Sam throws his way. So stay tuned. 

Next, the art show: First off, it was juried. Second, Sam’s work was accepted. Third, they chose his drawing, “Colored Hearts” for the invitation. How cool is that? Sam, who avoids noisy crowds, was in his element at the opening. With a huge smile he happily posed by his artwork. He sold “Colored Hearts” and his second entry, “Two Pears” is under consideration for sale. Not bad for his second juried show in his entire lifetime.

And now about that wedding: Sam casually told me he married Vanna White on Sunday. “Huh?” I asked. “You married to Vanna White?” “Yes,” Sam confirmed definitively. “What about MaryKate? I thought you wanted to marry MaryKate.” Sam seemed unconcerned saying, “No MaryKate. Vanna White.”

The funny thing is, I was with Sam all day so I don’t know how I missed the wedding. Still, he assures me he is married to Vanna White. It must have been a very secret ceremony. As far back as I can remember he has wanted to marry MaryKate. And now he has run off and married Vanna. Well OK then. Life is full of surprises.

As Sam’s mother, I am wrestling some obvious issues: Vanna is older. She probably lives in California. I think all those letters she turns captivated Sam and stole him away from MaryKate. Many thoughts run through my mind. How will this work? Will Sam be happy? Should I clear my clothes off the guest bedroom bed? Will I get a spot on Wheel of Fortune? Is the alphabet alone enough to sustain a marriage? Maybe. Sam does love his letters.

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Yes, no, I love you.

Sam bends down and looks steadily into my eyes with a certain smirking smile I know so well. I know what’s next. It goes like this:

No.

Yes.

No.

Yes.

No.

Yes.

No.

Yes.

No.

Yes.

No, no, no, no, nooooo!

Yes, yes, yes, yes, yes!

No, no, no, no, nooooo!

Yes, yes, yes, yes, yes!

No, no, no, no, nooooo!

Yes, yes, yes, yes, yes!

No, no, no, no, nooooo!

Yes, yes, yes, yes, yes!

We have our established roles. Sam does the “no’s” and I have the “yeses.” I have no idea what we are “yesing” and “noing” about. If I could think back to the inaugural “yes/no” I might remember, but that memory is long lost. I only know this particular word volley ends in silly laughter. The reason really doesn’t matter.

So many of our conversations are this way: scripted in nature, reruns from other days. We pass it off as conversation; it connects us. We understand the rules of the exchange. There is no frustration with our scripted exchanges. We have established lines; we are generally satisfied with the conclusion. Who has the last word is unimportant.

It is through scripted exchanges Sam makes most of his needs known. I am happy we have this mode of communication. I know we are lucky.

We have other types of conversations. They are not nearly as fluent. They are far less frequent.

Sam occasionally comments about the weather or something in his immediate surround; “It is very rainy today.” or “The sky is blue.” When probed, Sam can choose words like “happy,” “sad,” “silly,” “anxious” and “afraid” to report on his emotional state. Sometimes he can even indicate when he feels unwell.

Novel conversations remain very challenging for Sam. It took years to finally master most “who, what and where” questions.

“Why” remains the elusive.

Sam is rarely able to explain a reason for a behavior, action or request unless it is an answer he has memorized and answered hundreds of times. The answer to most “why” questions remain locked in his head, far from my reach. Though I like to think I know him best, I am frequently stumped.

We bumble our way through those conversations as I try to crack the code to Sam’s world, trying to elicit the meaning of each word; carefully observing his facial expression to see if it matches the comment.

This is how it is most days.

And then, when I least expect it comes a rare magical moment when he speaks, unscripted, succinct and perfect in every way as he did last night before he drifted off to sleep:

Stay with Mommy.

Why?

Because.

Because?

Because... because… I love you.

I always enjoy the banter of our scripted exchanges; the comfort they provide Sam. I love their rhythm. They provide us a place to meet, to connect.

I pause in awe of the novel conversations, though. They are rare and beautiful. I mark those moments and bask in their lovely space, cherishing them as the most special of gifts.

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Passing the torch

There are all kinds of guilt. Italian guilt and Catholic guilt are what I know best, though. I was raised on it. It is important component of every mother’s arsenal of tools. I know this from personal experience.

My mother was a master at subtly deploying guilt. She used it deftly to mold my behavior. I only had to hear her say softly, “Oh Janet” with a dash of disappointment and I would dissolve into submission. Add in a concerned expression and I knew I was responsible for the fall of the Roman Empire. And worse. From afar she still has the power to manipulate my actions.

Guilt is powerful stuff.

When I became a mother, I wanted in. As generations before me, I expected to impart guilt (only in dire situations of course) to help Sam make the right choices. 

But here’s the thing. Guilt is a communication style with subtle nuances. I quickly learned it wasn’t so easy to use on a child with less than stellar communication skills. I sent periodic “guilt messages” only to find Sam was born with a seeming immunity to guilt.

How would I ever mold this child? Oh sure, there were other ways, but as the product of an Italian Catholic upbringing, I wanted him to understand our language: that being, of course, "language" of guilt. Of course I wanted him to understand facial expressions, body language and voice intonations, too, so I tried combining a little tutorial. 

I broke it down, insisting Sam look at my face. “What is Mommy feeling?” I asked. “Mommy is sad,” Sam invariably responded as he indifferently resumed his misdeed or infraction. I was a failure to my heritage.

Recently, though, Sam was foraging for cookies just before dinnertime. He ignored me as I asked him to put the cookies away. With a sad voice I absentmindedly said, “Oh Sam” and slowly shook my head. To my surprise, Sam turned and walked across the kitchen to hand me the package of cookies. Then he pulled my face close to his and looked into my eyes saying, “No sad. Happy Mommy. HAPPY Mommy!”

OHMYGOD! He got it! The torch has passed. I’m pretty sure I heard my mother and grandmother and all the generations preceding her singing praise like a heavenly choir.

I believe my work here is done. 


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Living in the Tower of Babel

Within our fairly traditional home in our typical suburban neighborhood lives a self-proclaimed nerd, a dreamer and an autistic or in more contemporary terms, a right brain, a left brain and a we're still figuring it out brain. Not surprisingly, we have very different conversational styles. 

And though time after time I have listed “English” as the language spoken in our home on surveys and physician’s forms, it occurred to me after an attempt at conversing with my family recently that I live a modern day Tower of Babel.

The biblical Tower of Babel

Tony speaks fluent geek. He lives in a very factual world of black and white. If I say the sky is blue, I’d better be able to back that statement up with detailed information on the atmospheric conditions, gas molecules and light waves. ‘Blue skying’ a concept might cause his head to blow up into a thousand pieces; talk of feelings or emotions makes his skin crawl.

Sam is an expert in echolalia. He contributes to conversations by quoting a random movie, video or book lines that oddly parallel our conversation. On rare occasions even punctuating conversations profoundly. He interprets to the very literal meaning of each word. No idioms for him. Use the expression "kick him out" and someone WILL get kicked. I promise.

As the out to lunch member of the house, I am a sucker for subtle nuances and metaphors and exploring multiple meanings of books or movies. I use liberal amounts of body language thinking you can express more with the raise of an eyebrow than a pile of words.

Only nuances, metaphors and body language aren't among the known languages of the Tower of Babel.

Say the words "Cape Cod" and Tony responds with weather and logistics. I discuss shopping and scenery and Sam hears cheeseburgers. Go to a movie and unless the bad guy is wearing a black hat, Tony is hopelessly lost. Give me numbers to crunch or directions to follow and my eyes glaze over.

Ask us to give the high points of any conversation and you are likely to get two very different interpretations. As for Sam, unless chocolate is involved, he won’t interpret at all. 

We greet each day babbling in a parallel sort of way, each of us hopeful that our words are understood well enough to muddle through the day without disaster. And some days do end well. Others are hopelessly communication challenged with conversations ending with a very quizzical, “Huh??” or worse yet, “Wow. I didn’t see THAT coming.” And still other days end in hysterical laughter.

Now and again I hear bragging of the solidarity of a particular household; where the mere utterance of the word "blue" results not only a complete understanding of the word blue but also the exact shade of blue. Where conversations are succinct and communication effective.  

I don’t happen to know that home.

Though our communication challenges may be a more extreme than some, I suspect we are not alone in our Tower of Babel. And I wouldn’t want to live any place else. I’d miss the elation of those rare occasions when we get it right.

Who’d want to live a place where everyone understands exactly the same thing, anyway? I mean really, where’s the fun in that? 

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