For just one day

I am forgetting autism for just one day.

I am going to rub my eyes and see only Sam for just one day. I will not see his actions through the lens of autism. When Sam echoes my words I will see the compliment in his imitation of me. If he speaks in gibberish I will enjoy the melody of his voice without of prompting a sentence back.

For just one day I will let Sam be.

For just one day I won’t care that people judge or watch us curiously. I will not use the yardstick of others. I will not measure Sam in any way. I will simply see the sparkle in his eyes and enjoy the warmth of his smile. I will watch his favorite movies again and again. I will recite familiar words and appreciate their power to connect us.

For just one day follow Sam’s lead. I will laugh until it hurts. I will color happy colors and sing happy songs. I will live in the moment. I will forget about tomorrow. I will delight in what I have.

I will fight no fights. I will put the soapboxes away. I will brush all worries to one side. For just one day I will leave autism behind what spend time with the boy who makes my life complete. For just one day we will be. 

And when I return to tomorrow's planning, I will remember the boy and not the autism. 


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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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Close your eyes

I know his secrets. I know he was restless again last night. I can see fatigue in his eyes.

“Are you tired?” I ask.

“No,” he says as I watch him yawn.

“Shall I hold you?” I offer.

“Yes,” he says as he lifts his head for me to cradle him.

At nineteen he still looks at me imploringly, willing me to know his needs. With a look that says fix it. Make me feel right. And though he towers over me now, though his childhood years are behind him, I hold him as I always have. Today I know he needs sleep. I know like a young child, he resists leaving conscience thought. He can't find his way to slumber.

“Close your eyes,” I say.

“No close your eyes,” he replies.

“Just close them for a minute,” I suggest. "Just rest your eyes."

He accepts the compromise. Within a minute, his eyelids stop twitching. His body relaxes. I hold him until his breathing grows slow and steady. I carefully move my arm away. Then I inch away. In the soft light of the afternoon sun, I watch him. At peace. Aware I still have the power to make his world feel safe. 

And I wonder about tomorrow.

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Freedom to run

 Sam bolted.

That brief entry in Sam’s notebook by his behaviorist threw me into complete distress. Funny how certain words can trigger such intense reactions. Sam’s history of bolting is long and intense. Though Sam hasn’t bolted in nearly two years, those two words threw me into a panic as if he had never stopped.

Every worst-case scenario flashed quickly before me. I transported back to frantic chases in the dark. The terror of not knowing where to look; the fear Sam would put himself in harm’s way. Those were dark days.

I shot off a couple off hurried emails expressing my concern. 

The situation was benign and my concerns unfounded. Mr. Dog was the instigator. Sam was doing his best to hold onto him while Mr. Dog was busy being, well, Mr. Dog. Finally, Sam gave in to Mr. Dog’s impulse and ran as Mr. Dog pulled him down the driveway.  

There was a bigger story here that was not reflected in the notebook: Sam stopped when he was called to stop. He stopped dead in his tracks.  More surprisingly, Mr. Dog to stopped, too. What I thought was an alarming event turned out to be okay. Even worthy of celebration. Two years ago, the words “Sam bolted” would have ended in a very different way.

Still, by the behaviorists’ definition, it was a bolt because Sam had unexpectedly run more than five feet. "Sam should never run?" I asked. "We aren't saying that – we just note it as a bolt because it was unexpected." But who stops to announce "I'm going to run now?" Running is often a very spontaneous event. 

It felt as though we were still saying Sam could never spontaneously run. Never is a firm word. No
wiggle room there. After spending the better part of ten years teaching Sam not to run I was struck by what felt like a loss of freedom for Sam. I didn’t like it.

The fact is, Sam is in a good place now. I think his days of bolting are behind him. When Sam runs I don’t see the anguish, I see joy.  Yes, the mom who insisted Sam stop running for so many years wants him to run.

It’s about freedom; providing Sam as much freedom as possible. It's about trust. It's about believing more is possible.

I want Sam to know the exhilaration of running freely. He is young. He has strong legs built for running. And for the first time, he is running with an eye toward safety. He stops when we call. I want to encourage that. Who knows, maybe this skill will transfer over should he encounter a moment of danger one day. This is unchartered territory: this notion to allow Sam to run freely and trust he will listen, stay safe and always return.

Still, I think it is time to try.

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Perceptions

She leaned into me saying, “Let’s face it. We all have our challenges.”

With that, she shot a meaningful glance over at Sam and quickly looked back at me. It took a moment for what she’d said to register. To understand the implication. I put my coffee down and wrapped my arm around Sam as if to protect him. He was busy, head down, playing hangman. It was all but impossible to tell if he had been listening.

I quickly changed the subject worried what Sam might glean from this conversation. Sam focused on his game, though. Her innuendo hadn’t registered.

I wondered, how could her perception of my life could be so far off base? Still, I didn't correct her. I didn't try to convince her of the happiness in my home. She would still see heartache. Hardship. A mistake. People see what they want to see. I no longer waste my energy that way.

Yes. We all have our challenges. I surely have mine.

I wish I had a better attention span. I wish most days had more hours. It would be nice if Mr. Dog stopped chewing my chairs and stayed off the beds. I’d like a good night’s sleep. Finding time for a haircut would be a luxury. More order in my universe, nirvana.

These are garden-variety challenges. The kind you moan about over lunch with a good friend and quickly dismiss. I don’t think I’ve ever used the words “Sam” and “challenge” in the same sentence, though.

I’ve had it good: I’ve had the benefit of caring parents, a good education, a happy home filled with family and many thoughtful friends. And I have Sam. Beautiful, glorious Sam.

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The Yellow Chair

“Bahamas.”

“What did you say, Sam?” I asked. Sam plopped on my bed in his usual position and responded definitively, “Bahamas.” I glanced at his iPod to see if he was watching something about the Bahamas. He was watching Blues Clues - something about Side Table wanting to be in a show. Nope. Nothing about the Bahamas.

“Bahamas,” Sam said again, making it clear this was the topic he wanted to discuss. Sam had never mentioned the Bahamas before. I didn’t know he knew the word, let alone the place. That mattered little. When Sam wants to talk, we talk.

"OK. The Bahamas." I said. "What about the Bahamas?" Sam responded, "White sandy beaches. Turquoise water."

I laughed and said, "Yes you are right. Are you a travel agent?" Maybe he had seen some TV ads or a video on YouTube. "Tell me more about the Bahamas," I asked.

Sam added in rapid succession: 

"Big window. 
Blue slide. Yellow slide.

Yuck in the water.

Bubble in the water.

Under in the sea.

Under the bridge.

Yellow chair."

Wow. A lot of information. I had a feeling it related to something but I didn't know what. Why were the Bahamas on Sam's mind? Sam had visited the Bahamas two times, true, but the last trip was well over ten years ago. I'd never seen evidence he remembered back that far. So what was this sudden interest in the Bahamas?  Where did a yellow chair fit in? 

I tried to get Sam to chat a little more but for Sam, the conversation was over. He had turned his attention back to Side Table and her problem about getting a chance to perform in the show. 

This morning something clicked. I had recently scanned some photos and loaded them onto my phone. Sam always plays with my phone. Buried in with the recent photos was this:

The yellow chair. Taken in the Bahamas when Sam was five. A few photos later was this:

Taken under one of the bridges in Atlantis, the fish blowing bubbles.

Though I only had these three pictures, it was all there. All of it: the yellow chair. The blue slide and the yellow slide. The bridges. Walking "under" the sea. The fish and their bubbles. Everything. Even "yuck in the water" (seaweed to the unenlightened). Sam was describing a trip to Atlantis we’d taken many years ago. A trip I haven’t mentioned to him in many years. And he wanted to share his memories with me. Wow. Lesson learned. Sam remembers. 

Wow. Wow. Wow. And wow. 


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The diagnosis

“He doesn’t talk much” I remember someone saying, “are you worried about that?” Truth was, I wasn’t. I thought everything about Sam was perfect. Over the next month, I heard other moms whisper similar concerns.

At Sam's check up his pediatrician dismissed the worry. "Boys often talk late," he reassured, “Give him another month.” Much as I liked his answer, something made me investigate further.  Two months into a six-month wait for an appointment, a cancelation at Children’s Hospital brought us to Boston on a bright January morning. Sam was two and a half. I hoped it was a short detour in our happily ever after life, that the doctors in Boston would echo Sam's pediatrician.

We were met by a team of smiling doctors. Introductions were made. “Isn’t he a happy boy. Look at those rosy cheeks,” one doctor remarked. “Oh if I could have those thick curls,” said another before they whisked Sam away to a separate room. “You’ll chat with us,” said yet another doctor, “We’ll need some history.”

A few hours later the same smiling doctors reconvened and delivered several blows.

Certain words still resonate global delays, auditory processing deficits, motor planning difficulties and sensory disorder. The words “behind his peers” assaulted my ears again and again and again. I studied their faces and tried to understand.

A phrase I’d never heard before, “Pervasive Developmental Disorder (PDD)” was mentioned, debated and dismissed. Though they were not all in agreement, Sam’s stellar eye contact and joint attention prevented consensus within the group.  The look on one doctor’s face said in a sea of bad, this was possibly a very small glimmer of good.

They concluded with the words, “Connect with Early Intervention.” They smiled and complimented Sam’s beauty once more. They wished us luck and we were dismissed. We talked idly on the drive home, struggling to wrap our brains around the information provided; to make sense of this new foreign language. Sam, blissfully unaware, sang happily from the back seat.

I sat alone with Sam that night humming as I stared into his eyes and studied his face. Everything was different. Though I tried to dismiss it, I knew something had changed irrevocably. A dense fog had replaced the future that was crystal clear a day ago.

With Sam on my lap, I typed in the words, auditory processing, motor planning, global delays and sensory disorder and searched the Internet. As inconceivable as seems today, I only got six hits. I opened the first link. It began with the word “autism” followed by the words, “a devastating lifelong disorder.”

I closed the computer and took a deep breath.  

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