Saturday, September 2, 2017

I miss you

A few weeks ago Sam made the big move to adult services. I hoped the transition would be smooth. I did my best to prepare him and talk about the new friends he would meet. 
But what about Sam's old friends. All those people he would no longer see. Would he miss them? When communication is the challenge, it is hard to know. Sam seemed to sail through the transition. He didn't ask about school. But then Sam rarely asks. 
I wondered similarly when we lost my father. Did Sam miss him? Did he understand that loss? Just as I was about to give in to the notion that I would never know, I had a thought:
I asked Sam if he wanted to text MaryKate, his favorite teacher from school. "Yes MaryKate" he said. I opened up the text box to MaryKate and saying anything more, I my phone to Sam. 
To Sam, my phone is like gold with its anywhere, anytime access to YouTube. I expected him to immediately switch to Elmo videos - that's what he usually does. 
I was wrong. He stared at the phone for a long time and said, "MaryKate." Then he typed:
I miss you
Very much. 
Marykate happened to see the text and answered quickly. They texted back and forth for a few minutes, mostly about missing her and a visit on Tuesday. He chanted "MaryKate Tuesday" most of the weekend. 
I asked if he wanted to talk to anyone else. He asked for Tom and Megan. In the email to Megan he listed others he was thinking of. 
Sam has been asking for my father all of a sudden, too. I'm guessing he thinks I have him hidden somewhere, like MaryKate. My father would like that. While I can't make my dad magically appear, I do have the means to keep Sam connected with many who have been important in his life.
To that elite group who've made their way into Sam's heart - even those from long ago - it is safe to say you are there to stay as long as you are willing
Moral? I can guess and guess. Outward appearances can't be trusted. I don't know what I don't know.
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Saturday, February 6, 2016

Flying Away

I always have a nest or two of baby birds at my front door. I wait expectantly each spring to see who my new neighbors might be. A robin or a wren? Maybe a finch. No matter the breed. I catch a glimpse of the nest and count the eggs. I marvel the day the little birds hatch. 

I like watching the Mama bird hover nearby. She screeches in distress and flies about threateningly when humans linger too long by her nest. Though she is small and seemingly defenseless, she bravely protects her babies as she nurtures and prepares them for the world beyond my doorstep; as she prepares them for the gift of freedom.

Baby birds grow quickly. Within days they are flapping their wings, hopping around in their nest, readying themselves for what comes next. They know no fear. All too soon they take that inevitable leap of faith out of the safety of their nest, into my yard. They begin their new life. Mama bird has prepared them well. 

Over the years my doorway has provided the safe haven for many nests. I miss them when they leave. Like their Mama, I hope they will be safe.

As the February days grow steadily longer, I know it will soon be time for a new Mama bird to begin building her nest. As I think of this year's Mama bird, I am aware how I parallel her movements.

Most mothers got through the process of readying their young. It takes far more than weeks for humans of course. But whether it is weeks or years, the single-minded focus of a mother cuts across most species when it comes to preparing and protecting their young.

Like the Mama bird, I hover over Sam, trying to teach, prepare and ready him our eventual parting. Like the baby birds in the nest, Sam knows no fear. He has no worry of tomorrow. He bravely tackles each new endeavor. Like the Mama bird, I am aware of every threat. One day he will begin a life without me. 

Last year I saw the baby robins on their last day, teetering on the edge of the nest. I knew they were ready to go. I looked away for a moment and looked back in time to see the last one fly off. I watched a while hoping they might return, knowing they would not be back. This time, I cried for a moment knowing they were gone for good. I'd hoped for one more day. It is always sad when the baby birds go. It will be far more difficult to let Sam go. Freedom, however, is a wonderful gift.

Experience tells me time is short. We have to be ready. There is more learning to be done. So like the Mama bird, I continue to hover near, hoping one day Sam, too, will be ready to fly while wishing he still might stay.

Thursday, December 17, 2015

About those candles

Think of this as a Throw Back Thursday with a modern day twist. I am writing this on a Thursday, after all.

It began like this: Many years ago we were invited to a late spring get together in Princeton. Though it was an evening event, Sam was included – a rarity for us. On the appointed evening we drove to the home and lo and behold, the front yard was lit with votive candles and luminaries. It was very lovely. There must have been 500 of them in every imaginable shape and size, lining the walkway, the porch, the borders of the property. There were candles everywhere.

Plot twist. Sam had a thing about candles. He didn't think they should be lit. Ever. As we emerged from the car, Sam escaped and quickly blew out about 10 or 15 candles. We quickly ushered him into the house and hovered between the backyard and the kitchen. Almost no candles in sight. A safe domain. Or so we thought.

Sam has the memory of an elephant, so it was no surprise when he grew agitated as the night wore on. "Blow out the candles" he plaintively repeated again and again. His anxiety level escalated. He was determined to get to the front yard. There were candles that needed to be blown out and he was the guy to do it.

Sensing an epic meltdown in the offing, I told Tony we needed to go. Now. I had a plan: take Sam around the side of the house, skirt the 500 candles and get into the car.

Sometimes the plan doesn't work.

We rounded the corner. Using his Houdini skill, Sam broke free. He quickly attacked the first bunch of votive candles. Then the next. I tried to pull Sam into the car. His superhuman strength kicked in. He had a mission. He was saving the world from luminary candles. It became increasingly clear we were not leaving until every candle was blown out.

There was only one thing to do. I needed to help. We divided and conquered the candles. All of them.

It's amazing how quickly you can extinguish 500 candles. Surprisingly no one came or left during the candle elimination process. Tony assessed the yard. He asked if I thought we should inform our host. I probably should have said yes. It would have been the polite thing to do. I instead chose the cowardly solution: make a quick get away. Maybe they'd think a big gust of wind had blown the candles out. Maybe they'd believe there were Martians on Mars.

The next day, Tony confessed and apologized to our host and explained our need to leave quickly without a proper goodbye.... and about the candles. Our host very nice about it. He claimed they didn't notice.

This all would have remained a dim memory were it not for an email that arrived yesterday afternoon: Tony forwarded to me an invitation to a New Years Day potluck party. In Princeton.

Princeton. Princeton. I had an instant flashback. Candles. Endless candles. Crazy people running around some guys front yard. Blowing out candles... I quickly shot back an email saying, "Is this candle guy's house??" Tony responded with a simple, "Yes."

Oh, my. What lovely people to include us again. I wonder if they still have all the candles.

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 this 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 y 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 consist of a quick “hello and how are you” before everyone moves on to 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 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 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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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 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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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 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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