What I don't know

“You just don’t know. You just don’t know.”

That was Sam’s response to the news it was, in fact, Monday and yes, he was going to school.

Sam and I have an established early morning dialog. It begins with Sam’s statement, “No school today Mommy. School tomorrow.” I answer, “Sad but true Sammy you have school and I am going to work.”  After a few rounds of protest, Sam acknowledges acceptance of the day’s plan by responding, “Mommy works at the bank. Daddy works at the law office. Sam works at the school.”

Today was different.  He was not accepting the plan. He voiced his disapproval by saying again with passion, “You don’t know. You don’t know.” Where did those words come from I wondered? Likely scripted from one video or another, judging from the voice inflections. But his repeated use suggested thought and meaning behind the words.

“You don’t know. You don’t know,” Sam protested again.

He’s right. I don’t know. I can only guess. Would he just prefer to languish in bed or was a bigger problem brewing? As he looked up pleadingly, I knew he wanted – no – expected me to understand.

But I did not understand. I assured Sam he would be fine and helped him get ready and packed him on his way. As I watched the bus leave I was troubled by the passion of his words. I couldn’t get them out of my head.

I sensed something off kilter but what? What was it I didn’t know? The bus ride is too long? Too hard to get back into the swing of things today? Monday morning blues? The pollen? Stomachache? He’d simply rather stay home? Or something else altogether.

How I wish I knew.

  

How are you today?

For as far back as I can remember, I’ve greeted Sam with a simple question:  “How is my Sam today?”

In the early years, there wasn’t an answer. Still I continued to ask. Eventually an answer came; a scripted reply regardless of the day’s events: “Is good.” When Sam’s answer was more appropriate, I punctuated with, “I’m glad.”

For the better part of 17 years, our communication has consisted largely of scripted conversations sprinkled with a few less scripted chats surrounding Sam’s wants and needs:

Mommy, can I have a glass of milk?

Can I play with a laptop?

Outside, Mommy. Basketball?

Mommy, can I have a drive in the car?

What’s the plan?

Somehow we’ve muddled through information exchange, though conversations were more often one sided. This was just our life.

Today was a little different as we took a 40-minute drive to visit some puppies. The sound of Sam’s favorite radio station played softly in the background. Except for Sam’s usual “What’s the plan?” our trip was silent.

About 20 minutes into the ride Sam reached forward and placed his hand on my shoulder and announced, “I’m good.” Though perplexed why he offered this information, I responded absentmindedly, “I’m glad.” Again he said, “I’m good.” Again I responded, “I’m glad.”

Within a moment I understood. “I’m good” were his segue words. It was the only way he could figure out how to say what came next:

Softly I heard, “How is my Mommy today?”

For a second I stopped breathing. Ohmygod. OHMYGOD! An unprompted question. He took my words, twisted them and made his first unrehearsed and completely spontaneous question about someone other than himself. Most people don't understand the magnitude of such common five-word query. It is an ordinary one, asked every day without fanfare.

Families like ours will understand. Families who have spent hour upon hour painstakingly eking out the tiniest of words will know this is huge. Sam has never spontaneously asked a question about me – or anyone. Ever.

He may not ask again for months or years. But today he asked. He finally figured out how verbally say he cared. He is capable. That thought gives me goose bumps. I'm not joking. I really have goose bumps. Call out the National Guard. Declare today a national holiday.

As for me, I am good. I am great. And well on my way to suburb. 

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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.

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.

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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.

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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. 

Employee of the Month

Last night Sam said me, "Mommy is Employee of the Month." I thanked him for that honor. Then a few minutes later he said, "Slugule Mommy.” (Translation: Slug Mommy) and proceeded to try. Ah, it was a fleeting honor at best. Or maybe it’s some kind of Employee of the Month initiation ritual.

Either way, Employee of the Month isn't all it's cracked up to be.  

If Sam is indeed my boss, he can be an irrational one. The volatile nature of the last two months is certainly evidence of that. Even during better times it's a job filled with unexpected ups and down: Some days I’m lavished with affection for the smallest deed; other days my Herculean efforts are met with indifference. Or worse.

Still, there are those perks. As Employee of the Month should, I have the parking spot closest to the kitchen. A good day is like basking in warm sunlight. I never lack for entertainment. And if you like the twists and turns "I sure didn't see that coming" mystery, a week at my house could be nirvana. 

There are those nights when I am certain I can't make it through another day; days when I've had quite enough. Sleep coupled with a new morning brings optimism for a string of good days.  

I don't expect a plaque for this recent recognition, though the words alone were kind of nice. Thank you, Sam. I accept the honor. I'm going to pass on the 'slugule' though. You can give that to Tony.

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For Dad

“Ah, Jin,” I can hear him say. “No one ever said life would be easy. But you have to pick up the gauntlet. Life goes on.”

He taught me well. But right now I am having trouble remembering how to take those first steps without him. I thought I was ready. I thought I knew so much. I thought I had prepared.

I had him for so many years. Still, I am selfish. I want to hear his irreverent laugh. I want to watch him break into that slow, easy smile. I want to have coffee with the tall, rugged and handsome contractor from Massachusetts one last time. I want to hear a story about the wizard, the ancients, Roman soldiers and firing up his 88s. I want to know the warmth of his hand in mine. I want the comfort of his being so the world will feel right. I want to look into his eyes see them light.

I want to tell him that he was the best Dad. That I couldn’t imagine him any other way. That no one will ever make me laugh as he did. That for a very long time, the sun won’t shine as bright.

I can hear him say, “Ah Jin. Tomorrow will be better.” I know he is right. “You have to carry on.” I see his gauntlet laying before me but before I pick it up, before I take those first tentative steps forward it must be said, carved within the depths of my heart is a place where I will carry his voice. Where I will hear him say, "Jin! You’re here!"

And I will answer, "Yes I am. Always and forever."