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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