About those lights

My nephew Charlie once told me, “I’m all about the lights.” Born on Christmas Day, he knows a thing or two about lights. Christmas is the season of lights. We know a few things about lights, too. Sam was born on the fourth of July – another day full of illumination and festivities. I guess you could say we are a family to bright lights and celebrations.

Since Sam’s first birthday, we’ve had a tradition of watching the fireworks. The beauty of those colors lighting up an intensely dark sky coupled with Sam’s birthday is extra special. Sam thinks every firework shot that night is exclusively for him. Come to think of it, I kind of think so, too.

In the spirit of lights, we have a newer tradition: Autism Awareness Day on April 2. This year will mark our fourth year attending at the UMass Campus.

It’s our kind of event: It’s big. It’s got lights. It illuminates the sky. It relates to us. Perhaps most important of all, Sam relates to it. There's a lot of blue and Sam's favorite color is blue.  Like the fourth of July, he is convinced those blue lights are just for him. And they are for him. We’ve come to see this night not as a “celebration” of autism but rather as a celebration of our Sam.

Every child deserves to feel celebrated. For that reason we've instilled in Sam that he is everything we want him to be. He deserves that security; that affirmation he is loved.  That knowledge within our home he defines joy and perfection.

April 2^nd is our opportunity to send that message once again loud and clear to Sam by attending the Autism Awareness event at UMass. With old friends and new friends and friends we’ve yet to meet we will remember to honor all that is right in our world beginning with Sam.

We hope you’ll come.  

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The art of language acquisition

It is no secret we’ve been going through a difficult spell with Sam for the last few weeks that is particularly perplexing. His behavior overall is fine, even wonderful – except for the 5 to 15 minutes each day when he performs a fairly accurate Incredible Hulk imitation. 

Because we are working to get Sam back to his more peaceful self, each night when Tony gets home he asks hopefully how the day went. Thursday night, unaware Sam was within earshot I responded matter-of-factly, “Oh the usual. Sam got off the bus, slugged Josh and then he was fine.”  

Within a second I heard Sam say, "Slurgged Josh. Slurg Daddy.” Against my better judgment I corrected, “The word is ‘slug or slugged’. Sam accepted the correction happily. “Slug Daddy!” He proclaimed.

Great. A quarter of a million words in the English language and he picks a piece of slag to learn instantaneously. “No you don’t ‘slug’ Daddy. You don't 'slug' anyone or you are in big trouble.” I said. "Big trouble," echoed Sam.

Sam has not acquired language easily. Ever. For that reason, communication is a big focus. We use any moment as a teachable moment since Sam rarely learns a word easily or enthusiastically.

Somehow Sam found this particular word very easy to learn. "Slug! Slug Daddy! Slug!" I heard Sam say with gusto. The positive side of me was trying to find a small measure of comfort in the fact he had learned a new word.

I don’t think I have to explain the other side of me was thinking.

A little wearily I said to Sam, “Sam, you don’t ‘slug’ people. ‘Slugging’ is bad. Got it?” “Slugging is bad.” He echoed. “Use your words and say you need help.” I said. “Use your Sam words.” He confirmed. Slugging is bad.” I hoped we were done with it. But is is never that simple, is it.

This morning over breakfast I asked Sam how school was on Friday. Without missing a beat he announced with perfect clarity, "Slug Missy. Missy is nice. So sorry Missy." "Did you 'slug' Missy?! I asked. "No!" he denied. "Promise me you won't 'slug' Missy or anyone." "No slug Missy!" Sam affirmed. "Do you think we can talk about something nice now?" I asked. 

Sam ran off echoing "Something nice. Something nice." Then I heard gleeful laughter as he ran up the stairs saying, “Slug! Slug! Slug! Mommy says no slug. Mommy says NO slug.”

Ugh. Well, at least he got the last part right. 


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Don't give up

Life long pals. On vacation November 2000.

“Don’t worry,” I hear my father say. “He will get there.” He watches Sam, now asleep on his bed and shakes his head in amusement. “He looks comfortable. One thing about Sam, he is always smiling.” My father is Sam’s number one fan.

“Yes he is.” I confirm. “He gets that from you.” My father agrees saying, “When I was in the army I was always in trouble for smiling. They told me, Smiling Jack! Wipe that smile off your face.“ “Yes,” I say.“ And I have heard many other stories when you were in trouble for smiling.” True.” He acknowledges with another of his famous grins.

“How is school?” he asks. “Sam likes math,” I answer, “He likes to read, he likes to draw.” My father responds, “I think he will surprise everyone one of these days.” For a moment or two I feel safe within the cocoon of my father’s optimism.

“Sam is always happy,” my father marvels again. “Yes,” I say. “Well most of the time. He wasn’t too happy at school last week. And they weren’t too happy with Sam.” “Ah,” says my father, “no one ever said life would be easy. Never quit.” “Never quit.” I echo. In my mind I hear my Uncle Anthony tell me, “One thing about your father. He’s no quitter.” We are not quitters. This is our legacy.

My father drifts off for a moment and then returns to me asking, “How tall is Sam now?” “Tall like you. Six foot one.” I answer. My father likes that answer. He likes being responsible for Sam's height. “Sam is a good-looking boy.” He says. “He has a beautiful nose.”  My father also treasures beautiful noses.

He watches Sam thoughtfully. Then he reminds me, “My father used to say to us: Don’t you know, you didn’t come looking for me. I went looking for you.” “Yes, I remember.” I say, acknowledging my responsibility. “I had a wise grandfather.”

Sam is now awake and boisterous once more.  My father marvels one last time, “Look how happy he is. He will get there. Never give up.”

“I won't,” I promise my father for what will be the last time, “I won't.” “Good,” he answers as he smiles once more. 

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The challenging week

This past week has been a perplexing week as I’ve watched Sam’s behavior morph for reasons unknown to us.

At almost precisely 2 PM each day Sam has gotten very upset at school resulting in a period of anger and aggression. Each day we have 23 ½ hours of Dr. Jekyll and 30 minutes with Mr. Hyde. Whenever this happens we look for clues. Any clues that might explain.

Could it be the new medication he is on for his recently diagnosed epilepsy? Does he have a stomachache or heartburn? Has the thought of getting on the bus for an hour thrown him into turmoil? If so, why now after months and months on the same bus?

Each night I ask him about his day. He looks up with a sweet remorseful smile and says, “Sam pushed Aaron. Aaron is nice. Sorry Aaron.”

The following morning I send him off to school ready and prepped for a good day, hopeful whatever troubles him has passed. I am saddened when I get the call that Mr. Hyde has emerged once more.

Anytime Sam slides backwards behaviorally we are concerned. Teasing out the problem and rectifying becomes the focus of our existence. It is easy to become consumed by those 30 minutes of challenging behavior.

Today I read an Italian proverb:

"Count your nights by stars, not shadows; count your
life with smiles, not tears."

This reminds me of something important. We must address this current problem, yes. But it isn’t whole story. There is more good than bad; right now there are 23 ½ hours of good behavior for each 30 minutes of difficulty. I know Sam’s desire to succeed is strong. I know Sam can string together months and months of good behavior. I am remembering to count the stars and smiles.

We have been through difficult weeks before and made it though and back. As I look at Sam’s eager smile, I know it will happen again. 


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