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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