Monday, August 27, 2012

Breaking the news

I should have mentioned it sooner. That thought crosses my mind as I am asked a simple question: “Do you have kids?” I usually try to work it in long before the question is asked. But for some reason it didn’t work out that way today.           

“Yes. Just one. A boy, 17.” I respond, wary of the topic. “Oh? What grade is he in?” she asks. Scrambling to think, I say. “Tenth, No eleventh. Yes eleventh.” Her quizzical look seems to say, “You don’t know what grade your only child is in?”

No, I don’t. We don’t move from classroom to classroom or get a new teacher each year. The school year isn’t punctuated by summer vacation. A day rolls into a week and then a year with little change.

I try to segue to a new topic as she interjects the question of where Sam goes to school. “We don’t go to school locally,” I say finally. “Sam is has autism and attends a wonderful school about an hour away.”

I catch the look of discomfort as it flits across her face. I watch her hand briefly cover her mouth as if to prevent the words, “I am so sorry” from spilling out. And there it is. The subtle reminder my child is undesirable to some.

I want to tell her a part of me understands. When I first heard the word autism, I was scared. But that was so early on I barely remember the emotion. I don’t know if she would understand.

She hasn’t experienced the laughter. She hasn’t seen the victories. She doesn't know the joy or laughter. She doesn’t know the people we have met. She hasn’t had her heart melt as Sam looks deeply into her eyes with an ever-sly grin. She doesn’t know the quiet peace of holding hands. She doesn’t know our life.

And so I smile and gently respond, “Thank you. But I am not sorry.” What I hope she does understand is that like her, I see perfection in my child. Like her, I can't imagine him any other way. 

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Tuesday, August 21, 2012

Walking the walk

One step, two steps, three steps, four. That's how we do a walk in our family. We take a deep breath, throw in a little hope, put one foot in front of the other and just walk.

On our first try, we didn’t get very far – maybe only 100 yards. But we didn’t give up. It was a start. We knew we could do better. The following year we doubled it. A year later we almost made the distance. Ok, it was a toss up whether we’d finish from the back of a garbage truck or a police car (we chose the police cruiser), but hey, we finished and we cheered our Sam because we could see in his eyes he'd done his very best. 

We didn’t give up. We were intent on making the distance. We had friends and family rooting for us and we were determined to make them proud.

Finally, finally, in our 4th try, with determination in his eyes, Sam finished for the very first time. You can’t imagine the elation. It was like winning a gold metal after years of trying. Part of us couldn’t believe we actually did it and the other half wanted to shout how very proud we were of what Sam had finally accomplished.

This is important stuff, you see. It is the Walk for Autism Speaks and it is Sam’s charity. I am not sure why Sam chose it. Maybe it was the blue puzzle piece. Or the way Suzanne Wright looked deeply into his eyes and held his hands on the day of that very first walk. 

Old pros now, on Saturday we did our sixth walk. We entered the familiar tent waiting for the shout of “go.” And did we go! With a smile ear to ear, Sam walked the familiar course like a pro with me struggling to keep up. We passed people on the right and people on the left, finishing in record speed.

With the help of a lot of friends and Sam’s personal efforts selling his cards and drawings, Sam’s team finished 4th for fund raising and Sam finished 4th for individual donations. Wow! I asked Sam write about his experience and for anyone who missed his facebook post, here’s what Sam had to say:

Autism speaks walk. Is good. I walked the beach. Long walk. Lot of people.  
They sing autism speaks. I feel good. Hi everybody thank you.

As just one family of the collective whole of touched by autism, we thank everybody indeed. Today the world looks just a little bit brighter because of the many kind and generous people we are lucky enough to know.  As Sam would say, “Is good.” 

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Friday, August 10, 2012

The wizard, my father and Sam

Sunday afternoon means coffee and oatmeal raisin cookies
“Hey, would you like to hear a story about a wizard?” my father asks hopefully on most of our Sunday outings.

Regardless of my answer, he will tell the story. Sometimes starting at the beginning, sometimes in the middle, eventually he will look up and say, “You’ve heard this story before.”

I have. I know the story well enough to recite it with him. I know the small details he has begun to forget.

“Yes,” I acknowledge, “I’ve heard it, oh, a few thousand times.” He smiles and says, “I thought so.” Still, he finishes the story. Saying the familiar words provides comfort. He is happy visiting that long ago place.

In the back seat of the car Sam scripts from Dr. Seuss: “…Not in a box. Not with a fox. Not in a house. Not with a mouse. I would not eat them here or there. I would not eat them anywhere. I would not eat green eggs and ham. I do not like them, Sam-I-am…” Like my father, it is a ritual he enjoys.

I lobby for a few minutes of time in the present. I have more luck with my father. He contentedly answers my questions before reverting to yet another familiar story from his past. Sam is more challenging, the world of make believe luring him away for longer periods.

We frequently travel as a trio, Sam, my father and me, giving me ample time to note their growing similarities. Some via shared DNA, others brought to us courtesy of autism and aging.

Sam has my father's tall, sturdy build; his gait strong and confident as my father's once was. I see the same ubiquitous smile light up their eyes. It is a smile full mischief and more contagious than the winter flu. Impulsive in one moment and lost in space in the next, without warning they can build to a quick crescendo of frustration only to quickly shrug it off and flash back to that familiar smile.

Sam has my father's slight, mannerly reserve on meeting new people and shares his common belief that a good day includes a big oatmeal raisin cookie at a local coffee shop while prowling for the next opportunity to tease.

Sam in his Papa's tux for his "prom".
They’ve both been known to belt out a tune just because it feels good; in a sea of madness, they can isolate the joy of a single moment, all while tolerating my need to straighten their collars and shirttails.

The bond between my father and Sam is evident. I marvel at my father’s patience when Sam is too loud or difficult to reach. He cheers the tiniest of successes and on a bad day reminds me to never give up. And Sam? He loves my father. It is as simple as that.  

We’ve settled into a comfortable routine these last few months. I suspect like me, Sam knows all about the wizard. I shouldn't be surprised, then, if one day I hear the wizard story emanate from the back seat. No matter. There are worse things Sam could learn. It is, as my father points out, “It's a very good story and everyone loves the wizard”

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Friday, August 3, 2012

Forever and ever

“Mommy stay,“ Sam requests.
“How long?” I ask.
“Forever and ever,” to clarify, Sam adds, “is a lotta time.”
Wrapping my arms around him securely, I vow, “I will try.”

And there it is – an image of my mother and my childhood self. I can hear her voice.

“The fall passed so quickly this year,” she remarks to my aunt. Is she crazy? Doesn’t she know it takes an eternity for Christmas to arrive each year? And you can travel back and forth to the moon three times before my birthday arrives in late August? Time moves slower than a snail and it is endless.

At college graduation, it occurs to me my school years passed faster than I thought. But I am busy with my friends finding my way, each of us looking for separate answers in an oddly unified way. Only through the passage of time can we find our place. I am in a bit of a hurry to get to wherever it is.

Yes! A real first real job, soon followed by a second. Nights out with friends grow less frequent as one by one we settle down. Marriages and houses and jobs are the topic now. Who cares if spring comes a little more quickly? Everyone looks forward to spring.

Next come children. “Will I ever sleep again?” I ask. “Oh yes!” my mother assures me. I beg time to pass so I can get some sleep. And then, in a blink the year has passed and we are all sleeping. There’s crawling, then walking and we’ve looped around to Christmas again. How did that happen? No matter. Christmas is a wonderful time of year.

“Let me show you how to make the calamari, so you will know when I am not here,”  my mother offers one Christmas Eve. “Where are you going? You will always be here, won’t you?” I say half in jest. I can’t imagine life without my mother. She just smiles and chides me to pay attention. But that day comes long before expected, long before I am ready. Stop. Stop. Time, please stop. There is so much I don’t know.  

Sam is 17 now; almost an adult by law. As I look into Sam’s eyes, I’ve come full circle. “Sammy, listen.” I say, “Focus. You need to try. You need to learn this.” Like the younger me, he only concerns himself with today. He laughs, purposefully ignoring me. I continue to try, echoing words from my mother, aware I am only his guide though this part of life. And tomorrow will be here long before either of us wants it to be.

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