Friday, May 31, 2013

Hey Dude

“Hey, Dude. Hey, Dude. Dude! Hey, Dude. Wait your turn. Don’t cut the line! “

It took a moment for me to realize those words were directed at us, more specifically, Sam. I looked up to see Sam pushing through the crowd to board the Steamship Fast Ferry bound for Nantucket. In Sam’s mind, the only thing between him and his laptop was finding a seat on that boat. Those ahead of us were of no concern.

“Hey, Dude!” I heard again with a sigh of frustration.

“Sam,” I called. “Stop! Get back here. Now!” I turned to the man and said, “Sorry. I wasn’t paying attention. Dude over there is autistic and doesn’t know you’re talking to him.” The man instantly apologized, “Oh. I am so sorry! I didn’t know.” 

“How would you?” I countered. “He looks like any other kid."

“Let him go ahead,” he offered. “No, "Dude" here needs to learn to wait and play by the rules. Not everyone will be as patient as you. But thank you. I appreciate your understanding,” I replied.

We all got on the boat without further incident. Sam plugged into his laptop and all was well. Still, it made me think as I looked at the tall young man beside me. So many people we meet are very kind. Even accommodating. I appreciate each and every kindness. But what message I am sending Sam if I take advantage of those kindnesses? I risk destroying the line between entitlement and infringement.

How do we find that elusive balance? It is challenging to teach Sam to respect the rules he is capable of respecting. It is challenging to teach him to be aware of those around him. Still, that day I was reminded of the importance of learning to peacefully coexist. The world needs to bend a little for Sam, true, but Sam needs to bend a little too.

As such we will continue to answer questions other parents have long stopped asking:

How loud is too loud?
How much patience do we have a right to expect?
How much should others bend?
How much should Sam bend?
How much is too much?

And perhaps most important of all: how do we live in this world with everyone and not at the expense of everyone?

You’re turning 18, "Dude". I won't alway be around to help you navigate. There's a lot more to learn. I have faith we'll get there together.

Friday, May 24, 2013

A fairy tale prom

“No prom, Mommy. No dancing,” Sam protested. “Come on,” I bartered. “They will have chocolate cake.” Sam dug his heels in, “No prom! NO PROM! Shirt is too tight. Take off bow tie. Is too tight. Take off belt.”

“Oh, Sammy,” I said. “You look so handsome.” With that, he flashed a small smile and withheld further protest. Within minutes, we were on our way to Sam's prom.

Sam entered the room of the Bedford function room anxiously. A quick glance counted three girls to the fifteen plus boys from Sam's school. Not good male to female odds. Then I heard the girl in the lovely red gown wouldn’t dance because her date had not come. That left two available girls. Looks like you’ll be dancing with me tonight, I thought.

I hadn’t counted on the magic of the night.

About halfway through the evening, the girl in the red gown rose and walked purposefully across the dance floor. Those on the floor seemed to part as she made her way to Sam and stopped. She was stunning. Sam’s red bow tie, cummerbund and boutonniere complimented her ensemble perfectly.

Silently she took Sam’s hand to dance. He instinctively stood as she placed her red-gloved hand on his shoulder. They danced. And danced again. His earlier anxiety melted away. Was it this girl? A sense of belonging? The chocolate cake? 

Then came an unexpected moment: She stood on her toes and pulled Sam’s face down to hers and kissed him. Sam smiled sweetly as they continued to dance. And just for a moment, as everyone watched, they were just two teens at a prom.

There was one more kiss. And the night ended. Like many fairy tales, the magic was only destined to last that night. By Monday, the girl in the red gown confessed all to her boyfriend at school. Sam settled back into tee shirts and basketball and life went on as before. Still, there remains the beauty of a moment and memories of an enchanted night.

The other night I overheard Sam say, “Sam dance at the prom. He kiss-ted the girl. Red lips.” Yes, you did, I confirmed while acknowledging the sad truth the romance was over.

But as I said to Sam, you’ll always have Paris… um… Bedford. And that is more than we could have ever hoped for.

Thursday, May 23, 2013

The positive trend

It’s been a few weeks of steadily improving behavior. I think this requires a celebration. Or a footnote mention on the nightly news. It may not sound like much but in our world this is huge. It means we may be breaking a difficult cycle. Or maybe it’s just summer in the offing that makes me feel more optimistic. Whatever the reason, I'm hoping for more sunny days ahead.

We are emerging from a three-month streak of unpredictable behavior. That, too, may not sound like much. Trust me it is an eternity.

When we are within the aura of good, one day rolls into the next with little notice. After a long enough streak we begin to take it for granted. Even expect it. But the very minute – no, the very second I see a certain dark look linger in Sam’s eyes everything changes. Suddenly the entire future becomes uncertain. 

Breaking a cycle of challenging behavior is difficult. For Sam, self-control is grueling work. The angst in Sam’s eyes during these times is heart wrenching. It is emotional to watch him crumble into failure. It is exhausting to bear the brunt of his sudden anger. It is frustrating not knowing why. 

Each day I take a deep breath and force myself to believe we can get there again. Each morning I wake and think, maybe today as I bargain with every god. I watch the pain and determination in Sam’s eyes when he barely hangs on to control. I see his brief relief when he has made it through with his composure intact; when he makes all the right decisions. Those are moments of triumph you can’t imagine.

We document the difficult days, looking for trends and those elusive clues. We note the good days with equal importance. Maybe as a means of getting through the tough stuff. Maybe it’s my inner Pollyanna. Or all the positive re-enforcement we’ve been trained to provide. 

On marking our first successful week in a while, I asked Sam, “How was school?” “Is good,” He said. I prolonged the conversation by offering, “You had a perfect day. How you feel?” Sam continued to busy himself on his iPad, glancing up only quickly. He seemed disinterested.

But then I saw it: the corners of his mouth began to slowly turn up into the sly, smug smile he reserves for the important moments. It is a smile that says, “I did well.” It's a very contagious smile. “Feel proud,” he finally said.

Sure, there will be tears in the days ahead. But there will be triumphs, too. Life is too short to miss the triumphs.

Wednesday, May 8, 2013

The good mom

I took Sam to church the other day. He hadn’t been for a while but there was a mass for my father. It felt it important he attend.

We arrived early to allow time to settle in. Sam spent his time traveling back and forth between reality and fantasy: sometimes blessing himself and talking about the large cross before us other times talking about the 30 tons of grubs he’d apparently just won.

Sam needed frequent reassuring during the mass, asking in his distinctively loud and low voice, “What’s the plan?” Though he dwarfs me, he intermittently laid his head on my shoulder and wrapped himself in my arms for security.

With this as my backdrop, I tried to focus on the words being said while periodically reminding Sam to be quiet out of respect for the people around us. This has been our life for so long, I sometimes forget its peculiar nature.

People are kind at this church, though. When I glanced up, I saw some smile and nod at us. I appreciated their patience and tolerance. Though I did not know some of their names, The familiarity of their faces was comforting.

After the mass was over, several came over to talk to us, some because they knew my father, others just because they were thoughtful people. Each tried to say something kind and reassuring, mostly centering on what a good mother I am and the connection between Sam and me. It was nice to hear their words; to briefly believe I was all they saw.

Later that day I watched Sam struggle in distress and I pondered their words. His connection to me was evident as he looked to me pleadingly to right his strife. Though I tried, I could not fix what tormented him. I did not know the source of his pain. And at that moment I didn’t, feel like a good mother at all but rather like a fraud.