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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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.

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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.

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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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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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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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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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The burden

The words slipped out of his mouth with seeming ease. They were spoken before I could stop them. “Of course, you love your son, but I can’t imagine the burden of living with him.”

He was attempting empathy. He was trying to understand my life. But he had it all wrong. Though I was surprised by his words, I didn’t respond. Perhaps because of my silence, he thought I hadn’t heard. He said again “I can’t imagine the burden you carry. All the work.”

He couldn’t imagine my life. I understood that. Fair enough. Perhaps I wouldn't understand his life either. It can be hard to understand a life you haven’t lived.

I watched him shake his head again saying once again, “all the work, the burden of it all” and then trailing off. In total he used the word “burden” four times, making it clear he saw the only sadness in my son’s existence. I smiled politely, responding, “I don’t see Sam that way.”

I thought about his words after he left. About how someone, without ever meeting Sam, could sum up his life into the single word: burden.

If I thought he would have understood, I might have partly agreed. Sam IS a lot of work. He had that right. I would have then suggested most everything worth doing requires effort. Most of life’s achievements, large or small require work.

I might have pointed out the difference between the words “work” and “burden.” I might have said I look at our life with a sense of satisfaction. That we are in a good place, that there is joy in our life, joy in our home.

I don’t think he would have understood.

There was a time when his viewpoint might have crushed me; when I would have felt compelled to argue Sam’s worth. A different viewpoint no longer defines us.

A single word does not define Sam.


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Our lens

In the beginning I had a plan. I had certain dreams. Certain expectations. But life doesn’t always respect a plan. That is how it was with us. There was the “plan” and what actually came to pass.

Our early years became a blur when Sam showed signs of atypical development. I was hurled into survival mode while trying to make sense of it all. At the insistence of the specialists and the folks at Early Intervention, survival quickly morphed into “fix it” mode, effectively entering us into a war with destiny. Everyone was consumed with changing the path we’d been put on. They told me time was my enemy. I struggled to help Sam keep up as time spun relentlessly.

Each day was a roller coaster of highs and lows; a jumble of emotions, intricately tangled together, exceeding what seemed humanly possible. Emotions so big I thought they’d swallow us whole. I struggled; enamored with the child I had and saddened by everyone’s desire to change him. Unsure of what to do.

Sam, all the while, took most days in stride; forcing us to slow down, even stop to find joy in little things we might have otherwise missed. Within the sea of doctors and experts advising us of how to “fix” our child, Sam was the “voice” of reason, compelling us to find balance between the world we were told we wanted and the world we’d been handed. 

In a blink, eighteen years passed. And in spite of everyone’s best efforts, Sam’s path never changed. The only path that changed was mine.  

Raising Sam changed forever the lens I used to view life. He altered every perception, every understanding of what was important. He challenged every belief I held dear. He humbled me. He made it impossible to ever be the careless person I once was.

At first it was hard to let go society’s image of perfection. I didn’t know anything about raising a child with a disability. I was flying blind. Some days seemed endless. Progress was often slow. But somehow on the most difficult days I’d look into a pair of bright dark eyes and see a smile with the power to melt every frustration, to make everything inexplicably right. I knew the warmth of a hand that reached into my heart, compelling me to surrender.

Slowly over time I reconciled myself to the challenges; learned to see the perfection in what we had. And eventually there was peace. As we charted our own course I finally opened my eyes and saw before me the child I never expected, but knew beyond any doubt was exactly the child I’d waited my lifetime to find.

And it was good. 


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