The conversationalist

Sam: Hello Mommy. Scratch my itch. Can I have a salad please? Salad dressing. Dressing on the salad. Talking about blues clues. We are talking about blues clues. Do birthday cakes have hair? No. Do telephones have hair? Nooo. Do chairs have hair? Noooooo. Do bananas have hair? Noooooooooooo. But a baby has hair. Can I have a juice please? Ask Mommy. Can I have a juice please? Yes, juice. Mommy, juice please. Dleadaledaledaledalda.

Me: Cough.

Sam: Are you OK? Mommy, are you OK?

Me: Yes, Sam. I am fine. Thank you for asking.

Sam: Going to the hospital. Better call the doctor. Call the doctor. Are you OK? Are you sick. Dleadaledaladala. Hospital. Haaaaaaaaaaaaa. Mommy is sick. Ask Mommy. Are you sick? Drive the car. Going to the hospital. Better call the doctor. Call the doctor. Haaaaaaaaaaaaaa. 

Me: Mommy is fine. Eat your chicken.

Sam: Big squeeze. Are we there yet? No. Are we there yet? No. Are we there yet? No. Are we there yet? No. We are not. Are we there yet? No. Are we there yet. No. No. No. No. No. Are we there yet. Not yet. Are we there yet? No. Are we there yet? No. Are we there yet? No. Are we there yet? No. We are not. Are we there yet? No. Are we there yet? Haaaaaaaaaa. Dleadaledaleadaleada. Can I have a laptop please? Mommy’s laptop? Big hug. Big squeeze. Squeeze my Sam’s shoulders. Pimple. Squeeze it. Pimple. Squeeze it. 

Me: Much is that is an attractive offer, I will pass. Eat your chicken.

Sam: A dadadadadadadadaeeeeee. Do birds swim in the water? NO! Do butterflies swim in the water? NO! Do fish swim in the water? YES! Squeeze him. Squeeze him tight. Squeeze my Sam's shoulders. Do daffodils have hair? Noooooo. Squeeze him tight. Ask Mommy. Can I have a juice please? Take off. Take off. Mommy! Take off!! Take off green.

           

Me: It’s just parsley.  Eat it, please. You won’t die.

Sam: Mommy. I have a surprise for you what is it? The Lion King One and One Half, disk two. Mommy! I have a surprise for you. What is it? The Lion King One and One Half, disk two. Disk two.

Me: Gee, there’s a dream come true.

Sam: Mommy. Let’s take a drive. Go shopping. Buy some DVDs. Shrek Two. Mommy. Let’s go shopping. Buy some DVDs. Barney Visits New York. The movie. Mommy. Let’s take a drive. Go shopping. Buy some DVDs. Shrek Two. Mommy. Let’s go shopping. Buy some DVDs. Barney Visits New York. The movie.

Me: Maybe another day. Sam. Be quiet and eat your chicken please.

           

Sam: Shhhh. Shhhhh. Mommy. Be quiet. Stop talking. Haaaaaaaaaaaa. Can I play with a WII? Mommy. Let’s take a walk. Upstairs. Mommy’s laptop. A deedadeeedadeeedadeeedadeee! Are you my mother? Are you my mother?           

                       

Me: You know, there are days I wonder.  

Sam: Brown hair. Blue shirt. Black pants. Green tree. Blue sky. Scratch my itch! This one. This one. Hug. Biiiiiiiiiiig hug. Squeeze him. Squeeze him tight. No school. No school. Mommy. No school.          

                       

Me: Sam. Look out the window. What do you see?  

Sam: See dark. No school. Is dark. Dark is when you sleep. School tomorrow. Brown hair. Blue shirt. Black pants. Green tree. Blue sky. Scratch my itch! This one. This one. Hug. Biiiiiiiiiiig hug. Squeeze him. Squeeze him tight. No school. No school. Mommy. No school. Can I have a dessert please? Ask Mommy. Can I have a dessert please. Hello Mommy. Can I have a dessert please?Can I have a dessert please? Ask Mommy. Can I have a dessert please. Hello Mommy. Can I have a dessert please?

Me: Yes, if you finish eating. Less talking. More eating.

Sam: Dleadaaadeleeadadee. Well, that’s not a great idea.

Me: Eat. Just eat.

Sam: Waah, waah, waah. Mommy is sad. Poor Mommy. Crying. Tears of sadness.  Haaaaaaaaaaaaaa. Dleadaleadaladleadlas. Mommy is funny. Are you my mother? Are you my mother?

           

Me: Yup. Sad but true.

Sam: Can I have a laptop please? Ask Mommy, can I have a laptop please? Daddy’s laptop? Yes. Daddy’s laptop. Youtube. Mommy. Scratch my itch. Can I have cheese please? Cheese on the macaroni. Mommy. Let’s sing You Are My Sunshine.

           

Me: You are my sunshine, my only sunshine, you make me happy….

Sam: Mommy! Stop singing!! No singing! Mommy. Is empty. Empty. Dessert? Dessert! Chocolate? Chocolate dessert please. Holds hands. I need help. Help with chocolate. Ask Mommy. Can I have a dessert please?

Me: Come on. Let’s get dessert. How about an ice cream bar?

Sam: YES. YES!

A big smile emerges. En route to the freezer, there is an obligatory dance of celebration around the kitchen.  And finally, the kitchen grows completely silent.


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Lighting up more than blue

April 2 is Light It Up Blue for World Autism Day.

Last year, I took Sam to the Light It Up Blue event for World Autism Day at UMass Medical. I wasn’t sure what to expect or if he’d even care.

Still, I felt compelled to go; to see it live. As dusk appeared, people began to gather, soon numbering a few dozen. Outside in the dark, Sam looked around, both perplexed and anxious.  

The group was addressed with a couple of quick speeches, followed by a countdown. As it ended, I quickly turned to Sam:  “Look up, look up!” I directed. Suddenly the building was dramatically aglow, bathed entirely in blue; a very impressive visual. Instantly Sam’s face lit as brightly as the building he watched. Breaking into his characteristic broad smile, he read in a loud voice for all to hear:

“Autism Speaks. Is time to listen.”

Hearing Sam, a few people wandered over to chat. Do you like it they asked? “Yes! Is blue!” Sam responded, still looking up. We lingered a while after they wandered off. To see the building light up for something that so profoundly affects us was unexpectedly moving.

Later, as we were about to drive off, Sam pointed back and exclaimed, “Autism!” “Do you want to see it again?” I asked.  “Yes!” he said. As I made another loop around the now desolate, but still beautifully lit building I asked, “Sammy, what is autism?” He responded, “Sam is autism.”

Since the inception of World Autism Day I’ve heard varying perspectives: I've got my blue on. I'm not wearing blue. It's amazing! It’s just a bunch of blue lights. What does it mean? It makes a big impact. Why would I celebrate autism? It's everywhere. What a show of unity. 

There is no right or wrong. I respect every viewpoint and can only comment on how I feel.

It is difficult for me to separate autism from Sam. It is so intertwined with what makes Sam, well, Sam. On World Autism Day, I don’t celebrate autism. I celebrate every child, parent, teacher and friend who has been part of our journey. If it weren’t for autism, I would have never known most of you. 

Come April 2 we will wear our blue and honor all the folks we know and those we’ve yet to meet. And we will celebrate our Sam.  

Leaving the last words to Sam on this topic seems appropriate since he knows more about autism than me. I don’t think he will mind I’ve taken the following comments from his facebook page:

i tonight autism speaks light blue

Do you like the blue? yes i like blue. everybody be blue. Autism speaks light it up blue. Good. Because it's happy. Thank you.

Look for us April 2. We’ll be the ones in blue. 


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Putting the special in Olympics

I hate skiing. I really do. I don’t like the cold, the snow or the clunky equipment.

Still, some eight years ago I brought Sam up to Wachusett Mountain to attempt skiing with Special Olympics. I was hoping he would hate it. I could say we tried and move on with my good mother halo intact. 

He started by getting a feel for the equipment. Boots on and skies snapped into place, Sam intuitively bent his knees and found his center of gravity. I remember saying, "Hey that’s great, enough for today. We’ll come back another day." But Sam looked up at the big mountain, “Want ski!” That isn’t the kind of statement you can ignore. Particularly when it comes from a kid who barely talks.

That began eight years of the mad Tuesday night dash to Wachusett Mountain where Sam worked with wonderful volunteer coaches like Melissa, John and Dave and in earlier years, Maureen, Lynn, Kevin and Ken. Each taught Sam something important. With their help Sam quickly progressed to the chair lift. I remember the first time he fearlessly skied down the mountain sporting a grin encompassing his entire face all while reciting, “Green Eggs and Ham.”

Everyone cheered. So we continued.

Saturday we completed our eighth finals at Wachusett with teams from all over the state. The waiting room was noisy, confusing and congested with people: your basic nightmare for a kid with autism and lots of sensory issues.

Somehow Sam rose to the occasion, displaying a tolerance he typically can’t master. He patiently waited in the start position at the top of the hill for over 30 without loosing his cool. He cheered through endless awards despite the background din of a few hundred people and the reverberations of a noisy microphone.

I mentioned to one of the other moms at the beginning of the finals that Sam really didn’t care about the metals or winning. We participated for the weekly ski practices. But I watched Sam as the day progressed and I saw something different. I saw tolerance and perseverance. I saw pride.

It is true Sam wouldn’t mind if everyone in the room got a medal except him. It wouldn’t even slightly dent his self-esteem. But that isn’t to say he doesn’t like metals. 

This year he won three. A bronze, silver and finally a gold. Each time he went up to retrieve his medal he stood on an increasingly higher pedestal. Each time he smiled more broadly.

By the third trip up he glowed. 

To every coach, volunteer, mom and dad who offered kind words or an encouraging smile over the last eight years: You’ve converted me. No, you’ll never see me anywhere except the base of the mountain, it’s true. But you have made every trek to the mountain worthwhile. 

I can’t thank you enough. 

The "R" word

I keep thinking about Barry, a boy I barely knew. Older than me, he lived in an adjacent neighborhood. I mostly saw him from a distance in the summer, usually late in the day as he ran down the hill to the neighborhood pool, armed with a bar of soap and a big smile.

I was told he was retarded. I didn’t quite know what it meant, but by the way it was said, I knew it wasn’t good. Barry never bothered anyone. He never hurt anyone. He seemed content in his solitary water play. Still, I remember kids laughing and pointing and taunting in their singsong way, “Barry is a re-tard. Barry is a re-tard.”

Barry understood enough to know he was the target of cruel words. Sometimes he tried to chase the kids to make them stop. Other times he just played in the water with his soap and bubbles.

I wondered about Barry with a mixture of curiosity and sadness. Where was his mother? Why couldn’t he play with the other kids? Why were people mean to him? Did he ever cry? I was too young to understand that differences cause fear and fear causes ignorant behavior.

And then one day, I didn’t see Barry any more and I eventually forgot about him.

During college and my later adult years the word “retard” seemed to be part of everyone's vocabulary. Hardly a day went by without hearing, “I'm such a retard,” or an exclamation,  “That’s so retarded!” No one seemed to notice the demeaning nature of this expression. I certainly didn’t think of Barry.

But then along came Sam, followed by the inevitable day I noticed kids looking at Sam as they had looked at Barry. I heard the first snickers. I watched the kids point and laugh. It didn't take long to flash back to Barry.

Around this time I first heard talk of banning the “R” word. At first I ignored the conversation. It takes effort to change. It takes courage to take a stand. I rationalized and convinced myself it was just a word. A word that would soon be replaced with an equally demeaning word.

Still, I listened to the conversations. The arguments. It took a while but but I finally understood. If I was to look Sam in the eyes, I had to speak out against the word.

This is about  more than words. It's about devaluing people. Any people. This goes well beyond word "retard." It's about respect. We are all worthy of respect. We deserve better than social, ethnic or religious slurs. For those reasons I had to take the pledge to ban not just the “R” word, but also any hurtful word.

The next time you carelessly say “retard” or – any other degrading or devaluing word, please remember kids like Barry and my Sam. And think. With over a quarter of a million words to choose from, surely there is a better choice. 

For more information, please visit: http://www.r-word.org/

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Cheeseburgers, literally speaking

Living with a literal thinker can lead to some interesting situations.

Sam was looking forward to a night out at a local restaurant with cheeseburgers as the main event. Anxious to be on his way he surmised the only thing stopping him from getting his cheeseburger was Erika. The solution was simple. Erika had to go. And now.

Sam approached Erika saying, "Goodbye Erika." He took her hand tried to direct her to the door. But Erika was busy giving me an update of the afternoon's progress. Again he said, "Goodbye Erika." This was quickly followed by another "GoodBYE Erika."

Erika still didn't leave. Finally pulling out all the stops, he resorted to eye contact. Sticking his face in hers he said emphatically, "Goodbye Erika!" He tried again to pull her toward the door.

"Hang on Sam. We are almost done." I said as we wrapped up our conversation. Erika headed to the family room to collect her things. Sam watched her, clearly concerned. Any direction except the door was the wrong direction.  Anxiously he said, "Mommy!! Goodbye Erika!!"

"Do you want Erika to go?" I asked. "Yes!" he replied with enthusiasm. Without thinking I said, "Well then, go say goodbye to Erika, bring her to the door and kick her out."

With a plan in place he ran up to to Erika. Showing how well he could take direction, he lead her by the hand to the door and said, "Goodbye Erika!"

And then with an extra big smile, he opened the door and kicked her.


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There's a teenager under all that autism

Sam opens the refrigerator and pulls out a half-gallon of juice, plopping it dramatically onto the counter. He waits patiently, craning his neck for my attention. 

He brings the bottle ever so slowly towards his mouth, smirking as he continues to wait for a reaction. Seeing none, he ups the ante by making loud noises and drinks from the bottle. A game of wills, he trumps by grossing me out.

“Get a cup.” I finally say in a monotone voice. Sam laughs in delight. He grabs a cup, plunks it down and abandons it. Again he slowly raises the bottle back to his mouth, now barely containing his laughter.

“GET A CUP.” I say more firmly.

He grabs the cup, pours juice into it and leaves it, taking another quick swig from the bottle. He spits some of the juice out as he sputters in laughter.

“GET-A-CUP.”  I say more emphatically as I start to rise. Satisfied, he dances around the kitchen with the bottle.

“GET. A. CUP!”

Just as I reach him, Sam swings the bottle high out of reach, over his head. Around and around he dances while mocking in a high-pitched, singsong falsetto: “Get a cu-up, get a cu-up, get a cup-up.” Turning his lower lip downward, he pauses dramatically adding, “Mommy is sad. So sad.” He wrings his hands by his eyes and punctuates, “Waa, waa, waa.”

I sigh. I shake my head. 

Mission accomplished, he glows triumphant, hands me the bottle and leaves. I hear “waa, waa, waa” in between his laughter as he pounds up the stairs.

With Sam safely out of sight, I smile. I restore order and briefly wonder what heights he might achieve if I could only redirect that teenage attitude.

President, I think.


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The Runner

In another life he might have been a high school track star. He runs with a single-minded focus. Impervious to pain or cold, his endurance is impressive. His long strides make him almost elegant to watch and near impossible to catch. I have seen many try.

Sam is a runner.

If the stars had lined up differently, I like to think he could have been Olympic. He is that fast. But the stars didn't quite line up that way.

Sam runs for reasons known only to him, usually with little warning.  At 16 he is big, strong and impossible to stop. He can defeat almost any lock. Weather is no deterrent: he runs barefoot in frigid conditions, impervious to pain; on a bad day scantily clad in underwear.  On an isolated worse day, naked. He doesn’t consider safety. He certainly doesn’t consider propriety. His sole mission is to flee.

Flee what? Sam offers no explanations.

A behavior near impossible to control, we’ve gone from a daily event to months, even two years without a run, almost lulling us into a false belief we are finally safe only to be abruptly reminded we are not. 

We are fortunate Sam often follows predictable routes. We find him, cold and sad, always contrite; unable to explain his distress. We warm him, knowing we were lucky – this time. And we hope. Maybe one day we will have more answers; maybe one day Sam will really know peace and safety. And no longer need to run. 


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Valentine's Day wishes and chocolate cake

Valentine's Day is about people you love.  Sometimes those people are complete strangers you are lucky enough to know for a little while but remember always… this is about one of those brief but memorable encounters.

Dining out with Sam can be tricky business. Though he has some basic civilization skills and loves to eat, he dislikes the loud noise inherent to restaurant dining. Ever resourceful, he has a solution: over power all noise with a much louder noise of his own.

This begins what I like to think of as dueling tables: neighboring parties escalate their volume followed by Sam escalating his until some sort of crescendo is reached, making us quite unpopular with family, most friends and other diners.

Faced with a possible eternity of dining alone, I decided to work on dining skills at a new trendy spot, early one Tuesday night.  

To my delight we arrived to an empty restaurant. So far, so good. Everything went well until two older women entered.  Well groomed and elegantly dressed in an understated way, they were seated two tables away from us. I  felt a sense of impending doom.

The women began to chat, paying little notice to us. Sam happily took this as his cue to start talking and drown them out. I leaned into Sam and asked for a quiet voice but unfortunately Sam had left that voice at home.

I glanced at the neighboring table, knowing we wouldn’t go unnoticed much longer. I quickly resorted to plan B:  Eat quickly and leave.  Sam, who normally inhales food, suddenly embraced the concept of leisurely dining and refused to rush – all while chattering away endlessly.

“SHUSH!” I said, a little exasperated. Sam responded by giggling loudly, "Be quiet!"

I could see from my peripheral vision the two women were now watching us.

Finally, the older of the two womn leaned over. Here it comes, I thought. She completely surprised me when she said, “Honey, stop shushing that boy. Clearly he has something important to say.” Smiling she added, “I have friends that talk way more than he does and they aren't nearly as interesting.”

Addressing Sam she said, “Now what's your name? Sam? Don't you listen to your mom. You talk as much as you want. I want to hear everything you have to say.” Turning to me she added, “You have a delightful boy. Relax and enjoy your dinner – and don't let him skip the chocolate cake. It's divine.”

Sam smiled. Finally someone wanted him to do what he did best: make noise and eat chocolate cake. It turned out to be the perfect night – I met two wonderful women who were clearly heaven sent; Sam found the chocolate cake to be heavenly, too.

I will always remember those two lovely ladies. Their kindness meant the world to a stressed out mom. Wherever you are, we’re sending you lots of love and hopes for chocolate cake this Valentine’s Day. Sam and I will never forget you. 


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