A road to happily ever after

Sam is tired. I am tired, too. It has been a long, stressful hour.  

We are both tired and weary warriors fighting separate yet related battles. We've fought this battle before. We know it well. Neither of us wants to be in this dark place. But here we are. I watch the troubled look in Sam’s eyes. I see him begin to lash out and quickly restrain himself. I see his pain. For the next twenty minutes, we repeat this sequence many times.

After an impressively long string of near perfect behavior, Sam has inexplicably changed, defaulting to unpredictable actions. The prevailing mood is tense. Where did this come from?

I step back and wait. It is quiet. As suddenly as the behavior began it is over. Within minutes, a seizure follows. Was that behind the unexpected behavior? The answer is perhaps locked in Sam’s mind. He cannot or will not tell me.

Sam looks up at me from the seizure, confused. Finally, he speaks: “Tongue hurts.” “I’m sorry.” I respond automatically as I help him. He has no memory of the seizure. He does remember the behavior. In acknowledgment, he offers up, “Sorry Mommy. Sorry, Josh. Sorry, Mr. Dog.” In the next hour, he will apologize to just about everyone he knows.  Perhaps even some he doesn’t.

A friend points out that 135 days of near perfect behavior is amazing for any person; she is right. I know this. Still I am sad. I want the impossible. I want happily ever after. I want the fairy tale.

I watch Sam settle. I say a silent prayer that this is a brief detour; a blip. I will it to be so. The chorus of “Sorry Mommy, sorry Josh” plays its final round. This is a positive sign I think. I hope.  Exhausted from the behavior, exhausted from the seizure, a moment later he is fast asleep.

We wake the following morning to find the sun is shining once more. The sun continues to shine on the days that follow. They bring continued calm, new hope. I remind myself we are a work in progress, there are no fairy tales. We will never travel a straight line, there will be bumps, twists, and turns. 

We will find our way.

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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 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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The Runner

In another life he might have been a high school track star. He runs with a single-minded focus. Impervious to pain or cold, his endurance is impressive. His long strides make him almost elegant to watch and near impossible to catch. I have seen many try.

Sam is a runner.

If the stars had lined up differently, I like to think he could have been Olympic. He is that fast. But the stars didn't quite line up that way.

Sam runs for reasons known only to him, usually with little warning.  At 16 he is big, strong and impossible to stop. He can defeat almost any lock. Weather is no deterrent: he runs barefoot in frigid conditions, impervious to pain; on a bad day scantily clad in underwear.  On an isolated worse day, naked. He doesn’t consider safety. He certainly doesn’t consider propriety. His sole mission is to flee.

Flee what? Sam offers no explanations.

A behavior near impossible to control, we’ve gone from a daily event to months, even two years without a run, almost lulling us into a false belief we are finally safe only to be abruptly reminded we are not. 

We are fortunate Sam often follows predictable routes. We find him, cold and sad, always contrite; unable to explain his distress. We warm him, knowing we were lucky – this time. And we hope. Maybe one day we will have more answers; maybe one day Sam will really know peace and safety. And no longer need to run. 


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