The seizure

I thought of my father today. I think of him every day, but today I wanted him here. I needed to hear his reassuring voice. I was worried about Sam because he had another seizure.

Sam had one last week and two back to back at the end of June. The seizures scare me.

They come on without warning. Sam’s color quickly drains as complexion pales to a ghostly gray. His body convulses, jerking repetitively. His jaw is clenched shut. I roll him on his side and my mind runs amuck.

Though Sam can’t hear me, I call his name. “Squeeze my hand, Sammy. Squeeze!” Abruptly the seizure stops. I hold my breath while Sam lays limp, looking mildly confused. He looks up, with no knowledge or memory of the seizure.

Today Sam said, “Tongue hurts.” There was blood on the comforter. “Tongue hurts,” he said again adding, “Kiss it.” Since I had no other way to help him, I kissed the tip of his tongue. With that Sam smiled and resumed his laptop play, adding “feel better,” in a tone of dismissal.

Everything was OK again. But I couldn’t quite calm.

I thought of my father. What would he say? “Jin, don’t worry too much. You do the best you can – that’s all you can do. See what the doctor has to say. Sam’s a big, strong boy. I think he will be OK.” Next would come the tease: “I think you need some therapy.” That meant Dad therapy. Dad therapy always came with coffee so he’d add, “Come on. I’ll buy you coffee.”

Remembering his calm, easy voice felt good. The world was righting itself again. I called the doctor and left a message. And then I brewed some coffee. Enough for two. 

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Inspector Poop

(Warning, you many not want to read this if you are eating lunch.)

I’ve heard it said the way to a man’s heart is through his stomach. While that may be true, I’ve never had time to test the theory. I’m usually busy doing other things. I can, however, tell you with absolute certainty that the way to Sam's good behavior is through his stomach.

I know this after years of experience; after years of observing what goes in one end and comes out the other and tracking the ensuing behavior. At our house, poop reigns supreme in the quest for behavioral success on any given day.

Sam can’t tell us when his stomach bothers him, thus, my observational skills are critical. I've become something of a “poop” expert; i. e. the lucky individual who surveys what Sam leaves behind in the toilet. I check color, texture, quantity and more. I note the length of time between what Tony eloquently refers to as “dumps.” I look for correlations (good or bad) to what Sam ate.

There’s nothing quite like the words, “Sam left something for you in the toilet. I know how you like to inspect his deposits” to complete my day. Still a mom has to do what a mom has to do. After a particularly pungent episode, I think of my father as I ask, “Sammy, what did you eat today, snakes?” Sam generally smiles and acknowledges succinctly, “Stinky.” Um. Yes.

While this may not be the job path I dreamed of in college, it is important work. A well-regulated GI system can mean a successful day at school and a meltdown free night at home. Any lapse in regular “deposits” gives me a heads up that trouble will likely be on its way. 

Recently we’ve taken on the challenge of undoing the sequence of “a meltdown gets me help” and replacing it appropriate language use to get attention. Last night I witnessed a small success as Sam pointed to his stomach saying, “It hurts.”  This was followed a few healthy belches as Sam narrated, “Sam burped. Excuse me. That’s disgusting.” While I generally agree with Sam's assessment that burps are disgusting, I have to admit I cheered because it sure sounded like music to me.

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The art of blending

Red and blue make orange. Yellow and blue make green. Red and blue make purple. I remembered these combinations as I watched Sam draw and noted Sam wasn’t one to blend his colors. This is in part because he already has green, orange and purple crayons and doesn't see the need. It is also because (I think) he likes his colors exactly as they are. Orange sits next to red and blue sits next to green. They may overlap but they don’t blend.

I was taught to blend.  

We blended our voices in glee club; we blended in our navy blue uniforms. Years of Catholic school education taught me it was important to behave similarly. I listened to orchestras blend instruments to create harmonious music. I watched my mother masterfully blend seasonings to create a meal. I live in a country that prides itself on  blending its cultures.  

So what of Sam, the child who simply didn’t blend? My first inclination was to curb the behaviors that made him appear different. 

But Sam with his big rosy cheeks and impossibly bigger hair found it difficult to modify his behavior. After countless hours of ABA therapy, social groups, behavior incentives, and interventions I’ve long forgotten; in spite of Sam’s eagerness to please, he did not blend. I could look out at a pack of kids and pick out Sam in a nanosecond. 

I redoubled my efforts to "suck the autism out of him" without stopping to wonder why it was so necessary. Finally after years of perceived failure, I wondered why it was important; how had it become the focus of our lives? 

I also remembered Sam's reluctance to blend his colors; how he chose color after color, placing them side-by-side, rarely blending just having them co-exist. His seemingly random technique always evolved into a harmonious whole. Though his work was far more abstract, his approach reminded me of the Georges Seurat paintings I'd studied long ago with individual dots of color, each important to the success of the overall image.

Maybe our answer lay in Sam's artwork. I began to think of our family: three very different people who  managed to blend into a family, while retaining individuality – even liking our differences. Together we made a whole. Just like like those colors laid side by side in Sam's drawings: each color critical to the success of the completed whole. 

If we could meld our differences into a family, surely there was a way to extend it to create a community. Sure, Sam needed to work on skills to learn when/how to compromise. His success in a community will always remain contingent on his ability to cooperate; find common ground and peacefully co-exist. But cooperation, diversity and individuality can exist together. 

I like to think Sam might one day be one of the colors in a Seurat painting that fascinated me so many years back. Up close, a bunch of random dots. Step back and the dots create entirely new colors and a beautiful image emerges. That is what I hope for Sam: retaining his individual “color” while blending together into the canvas of a harmoniously diverse community. 

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A piece of paper

It is very early and relatively quiet in the house. Amidst the quiet a battle of epic proportion rages in my mind. Though the battle cannot be won or lost, it is fought relentlessly.

Yesterday we filed papers for Sam's guardianship.

The battle is intense. The practical side of my brain shouts your son cannot care for himself. He cannot make appropriate decisions. You must protect him. You have no choice. The emotional side counters, but you've taken away every freedom. Every freedom. Do you have the right to do this? It will be all but impossible to reverse. And the practical side argues back, the odds of ever needing reversal are near zero. It had to be done. There was no other choice. 

I don't know. I don't know. 

And inexplicably come tears for something I've known about for years, forcing me to admit I still held onto a false hope that somehow, some magic or some angel would swoop in and make it all right. 

But there is no magic; there are no angels I can see. I dry my face, take a deep breath and take the first steps toward acceptance. I remind myself nothing has really changed but a piece of paper. There is a puppy nipping at my ankles, the coffee maker makes its normal hissing sounds. The refrigerator hums in the background. It is raining as predicted. The July flowers are blooming as they always do. I hear the ordinary sounds of Sam waking upstairs, unaware. It is just another July day.

And life goes on.

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Mr. Dog: A new adventure

The time was never right for a dog. Maybe there is never an exact right time. Still, a series of events propelled us toward taking one on. Perhaps we were in need of a distraction. Or maybe it was just fate. Whatever it was, a puppy Sam dubbed Mr. Dog was about to become part of our family.

The news that Mr. Dog would soon move in was met with varying degrees of enthusiasm. Sam was delighted. I was cautiously optimistic. Tony was apprehensive at best:

           

            Tony:          Mr. Dog will live outside. Right?

            Me:             Mr. Dog will live in the house with us.

            Tony:          My mother always said animals belong outside.

            Me:             Fortunately for Mr. Dog, my mother never said   

                                anything of the sort.

            Tony:          I'm not going to like this, am I. 
            Me:             Probably not.  
            Tony:          What if it doesn't work out?
            Me:             We'll go with plan "B".
            Tony:          Oh OK.    
                                (long pause) What is plan "B"?
                                (another long pause) 
                                There's no plan "B", is there. 
             Me:             No. Not really.  

About two weeks later, Mr. Dog arrived.

Our first day with Mr. Dog, I was amazed at his sweetness; how quickly he bonded with us. We were instant celebrities on our first trip to Nantucket. Everyone wanted to meet the sweet little chocolate lab puppy. Unsure of his new home, he displayed a meek and gentle nature.

On day two, he began to settle in. Seeing no need for a leash or harness, Mr. Dog showed the skill of Houdini as he wiggled out his harness multiple times in mere seconds. Then he tried to eat it. On day three, I questioned why we didn’t name him Jaws as he chewed his way through our house.  When he ran out of household items, he gnawed my left arm with his needle-sharp teeth. He eyed a heavy cable wire like it was a thick, juicy steak. He ignored every chew toy. He ate my rose bush. For dessert, he ate the power cord to my Mac. He thought the toilet scrub brush was a plaything.

On day four I admitted it: Mr. Dog was a lot of work. He ate like a pig. He slobbered his water. Left to his own devices, he christened any carpet in mere seconds. He had a shrill whine that could wake the dead. Alarm clocks? Obsolete. Mr. Dog reliably woke me at 5:10 each day. Though I managed to protect them, I knew Mr. Dog was stalking my shoes. He was everywhere and into everything.

There were moments when I wondered if Mr. Dog would survive into week two.

Fortunately, like most puppies, Mr. Dog was blessed with the maximum of puppy cuteness. He had the market cornered on happy. It was hard to stay angry at a creature so gleeful. I was also well versed in negotiating the unexpected. After all, the unexpected has been our norm for the last eighteen years.

There was, of course, the Sam factor: I was optimistic about this new adventure for Sam. I was hopeful through Mr. Dog Sam would gain some independence; that Mr. Dog would become a trusted friend.  

I saw early glimmers of magic with Sam and Mr. Dog when Sam took time away from his precious laptop to patiently pat Mr. Dog. He liked Mr. Dog to sit with him at times and laughed gleefully each time he heard me say, “Mr. Dog, you are in big trouble.” As Mr. Dog’s ally, Sam offered some helpful advice: “Mr. Dog, whatever you do, don’t eat the TV.”

Probably the defining moment occured early on as I watched Sam gently cradle Mr. Dog. He leaned over and whispered into the puppy’s ear, “He’s perfect.”

Each time I am frustrated with Mr. Dog, I hear Sam's soft whisper and know though there will be mishaps and missteps we’ve made a good choice.

Mr. Dog, I bid you welcome. Welcome to our new adventure. 

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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.