Thoughts of tomorrow

Today we made a morning stop at the blood lab to check all Sam's levels because his seizures persist. We're trying to figure out the culprit - low sodium levels caused by one of the meds or perhaps he isn't at a therapeutic dose for the new medication. Or maybe this isn't the right medication at all. 

Being a Saturday morning, the hospital was quiet and easy to maneuver. While we waited, we heard, "You can come in, Maria" to a family accompanying their grandmother. Sam turned to them with a big smile and sing-songed at them, "Mar-ri-ia" to their delight.

Sam greeted the two phlebotomists with a big smile. It took him a while but he answered their questions about his name and date of birth. Everything went smoothly and Sam jumped up and announced it was "treat time." He would like a chocolate chip cookie, thank you very much. The staff waved goodbye and wished us well. 

Next stop, coffee stand for reward time. Sam, still sporting his smile chose a chocolate donut instead. The person nearby looked up and began smiling too.

When I noticed I had forgotten my cell phone we headed back to the hospital - the security folks help us and took a moment to chat with Sam. On our way to the door, Sam suddenly turned, calling, "Hello Ethan!" to a man to our left. The man glanced over and I said, "You must look a lot like someone named Ethan because my son is very eager to greet you." He stopped to talk for a moment to Sam and then lamented to me that he'd rather "look like Robert Redford." 

As I drove home, I reflected on how positive the morning had shaped up. Sam is so much more comfortable - even interactive - with people these days, in spite of his communication challenges. He has an easy smile that seems to put people at ease. 

As with other mornings like these, the crystal ball of Sam's future tells me to worry less about his happiness when I am no longer part of his life. He will carve a path and find happiness wherever he is. It is his nature. 

That is only half of the story.

Later this morning I watched Sam become agitated at home. The familiar roars and number yelling surfaced as he ran around the house screaming and crashing into walls. I sat with Sam as he scripted random lines and verses until he finally calmed down enough for me to figure out his stomach was upset. The earlier donut had come back to haunt us. 

The happy guy I described and the out of control young man in the last paragraph are both part of the Sam I live with daily; the Sam I love. 

Happiness isn't the only measure of Sam's future success. While I may have confidence that Sam will find happiness where ever he goes, without the ability to communicate in moments of duress, Sam's safety will alway be at risk. His health will be at risk. And I have no solution for that. So while I don't really care at this juncture what caused his autism or that autism is part of our lives, I care passionately about treatments that might one day ensure his safety and provide him inner peace.

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The Boat

Lining up, bag in hand. 

It’s our Sunday night ritual in the summer. We catch the 6:15 boat from Nantucket and head home. The boat workers have come to know us. They’ve watched Sam grow up. They make small accommodations for him that makes it easier for Sam and me. Many of the passengers have grown just as familiar.  After years of practice, we have it down to a routine.

Being Labor Day, last weekend was different. The 6:15 boat was sold out so we took the later boat. Everything went seamlessly. One of the boat staff called out, “You’re going home late, Mr. Dog.” We sat as we always do chatting with nearby travelers.

As we arrived near the dock, the usual flurry of activity occurred as some people began to line up. A woman from behind approached my sister politely saying, “May I?” asking to pat Mr. Dog. Sam was standing nearby drinking – or rather happily slurping his soda, unaware of the commotion. He’d recently learned to drink soda from a can by employing an impressively loud slurp.

Above the low din of our fellow travelers, I heard the woman from behind address Sam saying, “Only babies drink soda like that.” I looked over to my sister, perplexed. Was the woman joking?  Sam continued drinking his soda for a few seconds longer and stopped. The story would have ended there with the woman’s intent unknown. Except Sam’s soda can wasn't yet empty.

Sam resumed his loud slurping, sucking out the last drops of soda from his can. The woman spoke again, addressing him more firmly, her voice cutting through the buzz of people collecting their bags, “Has anyone told you it is rude to slurp like that?!”  I was taken off guard. I didn’t speak. I looked instinctively to Sam. He was smiling serenely, smiling his sweet Sam smile.

My sister turned protectively. To the woman, she said, “He is autistic.” Then she added, “You should think before you speak.” The woman looked away as she replied, “I didn’t know. Thank you for telling me…. I’m sorry…” A moment later she was gone. A nearby older woman caught my sister’s eye and nodded to her affirmatively. 

Labor Day weekend. Marking summer's end on Nantucket. 

Then I heard Sam speak as he smiled again. He seemed to sum up the preceding minutes by saying, “This is turning into a difficult situation!” As I assured him the situation was just fine, I had to wonder how much he understood.

On the drive home, I thought about the woman. Clearly she felt badly for her words. That troubled me. I don’t want anyone to feel bad. Still I was glad my sister was able to speak up on Sam’s behalf when I wasn’t.

The takeaway? I don't know. Maybe simply a reminder to resist judging. Things are not always what they seem. Some disabilities are not always visible to the naked eye. A little tolerance goes a long way.

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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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