Saturday, September 26, 2015

Learning to bend

We were in the company of a young man around Sam’s age one day this summer. We didn’t know his story – our paths were only destined to cross that one time.  At first glance it appeared his skill set was more advanced than Sam’s – he had the gift of language.

It became clear the young man’s needs were great. His communication skills were not enough to get him through an unfamiliar environment and a change in plans. While Sam needed supports, at this moment young man needed more. We accommodated by asking Sam to be patient and let the young man go ahead of us. We asked Sam to tolerate noise that would have otherwise been a challenge.

Though he hasn’t had much practice, Sam was able to bend for a peer that day. He waited patiently and showed empathy, asking if the young man was OK, trying to pat his shoulder. I was proud of Sam’s generous spirit. I was glad he wanted to help.

Over the years we've expected others to make accommodations for Sam hundreds upon hundreds of times. It got me to thinking how much we live in our own world not realizing how much we ask of those around us. I like to think each offer of patience provided the grace notes Sam needed to develop the coping skills he used to accommodate this young man.

It also reminded me the world isn’t only about us; the world can’t only revolve round Sam’s needs. It is important for Sam to learn to bend and to give back – even if only a little. That’s what community is about, each of us doing what we can to ensure the success of one another.

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Thursday, September 24, 2015

The blue sneakers

Sam has historically preferred the familiar to the new. He rarely noticed people outside his inner, trusted circle. In the last few weeks, however, something has changed.

For reasons unknown to me, Sam is interested in meeting new people, calling out an enthusiastic “Hi” to people as they pass by. Because Sam hasn’t developed a knack for securing joint attention before he speaks his success rate is spotty: some people answer back. Some do not. Fortunately Sam is blessed with tenacity, resilience and a healthy self-esteem. He simply tries again. Or moves on. His success or failure doesn't dampen his enthusiasm for future encounters.

I've been watching Sam from the sidelines. I enjoy seeing each attempt unfold; watching the interactions. They usually consists of a quick “hello and how are you” before everyone moves on with their day. 

This weekend brought something different. For the first time ever, Sam engaged in an unprompted and extended conversation with someone he'd just met:

Sam:    Hi Diane
Diane: Hi Sam
Sam:    How are you?
Diane:  I'm fine. How are you?
Sam:    I'm good... (long pause) I like your shoes.
Diane:  Thank you.

For the first few seconds it was a conversation anyone might have. And then it wasn’t as Sam abruptly bent down to get a closer look at her feet. He must have really liked her shoes. On his hands and knees he felt the fabric of her blue shoes and explored their rubber trim. Diane didn’t seem to mind. A moment later he flashed a smile as he popped back up saying, “good blue shoes” and turned his attention to some newer faces.

That’s how it is with Sam. 

It's be tricky finding the  balance between intruding on the space of another while allowing Sam the freedom to  explore and learn to navigate the social arena. There was a time when I might have jumped in and re-directed. I’ve learned to step back a little more and allow Sam the time to think and develop in a way that suits him.

These are exciting times for Sam. He’s pushing some through some new boundaries because he wants to – not because someone thinks he should. He’s enjoying these new interactions.

And I have the privilege of having a front row seat watching grow into his own unique Sam.

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Saturday, September 19, 2015

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 simile. 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. They staff waved good bye 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 with Sam to chat. 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 about 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, with out 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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Friday, September 11, 2015

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 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 badly. 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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Friday, August 1, 2014

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 others use. 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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Thursday, July 17, 2014

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 wary 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. There 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 acknowledgement 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.