A child is born

Both families rush to divvy up the parts.

He looks like Tony. He looks like me. He has my mother’s nose. Our first joint production, we want a piece of ourselves reflected. Maybe we are proud. Maybe we want to ensure our immortality. It is a time of elation; everything is perfect and anything is possible. He will be the child of all children.

As he grows and changes, new assessments take place. He has my big hair, my easy smile. No one argues Tony’s unmistakable eyebrows. We find an owner for the parts we can’t quite figure. Are the sturdy hands and wrists from my grandmother or Tony’s father?  He is attributed with my even temperament and Tony’s focus and fondness for routines. 

As time passes I note he doesn’t like to sleep. He gets that from Tony, my mother-in-law proclaims. Sometimes he doesn’t respond to his name and drifts to another world; you were like that as a child, my mother mentions. And Tony and I turned OK. I am briefly reassured. Still, nagging questions are subtly asked; I sense his perfection is in jeopardy.

When did I first hear the word autism? I don’t recall exactly. The inquires begin: who did it come from? How did it happen? No one lines up to lay claim to the autistic features.   

But the fact is I see us there as well: my distaste for noise and people cluttered rooms, my need for solitary space, my fascination with color. I see Tony’s compulsiveness and his gift for numbers. I see his sensory cravings as Sam attacks the fierce waves of an open ocean. I see my temperament when Sam finally looses it on a long, rough day.

We are part of what made him all of him, even the autism. We lay claim to it all. And in doing so, find the joy in who he is.    

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Career choices

When I was just a little girl,

I asked my mother, what will I be?

Will I be pretty, will I be rich?

Here’s what she said to me:

Que sera, sera,

Whatever will be will be

The future’s not ours to see

Que sera, sera

I never had that exact conversation with my mother but from as early as I can remember I thought about growing up.

Thanks to Mattel and their endless array of dolls, my earliest career choice was to be a Mom. But after cutting off the hair off every doll I owned, and a few I didn’t, the next obvious choice was a hair stylist.  Access to an endless array of folks whose hair grew back sure looked like nirvana.

Ballerina was a brief flirtation. The tutus looked pretty. The realization my brain and feet had only a passing knowledge of each other seemed to be a stumbling block.

My first airplane ride in 8^th grade hooked me on travel and becoming a stewardess. Those pretty ladies with the smart outfits not only flew free, they got paid!  In high school, famous seemed a worthy endeavor. Stage fright ended that notion with a thud. In college, I settled on art without a vague notion of where I’d end up. I just figured I’d know when I got there.  

After graduation, I found work in marketing and design and I thought I finally had everything figured out. And then along came Sam. It was around his third birthday I finally figured out what I’d been training for my whole life: a career as a Samologist.

Not everyone can be a Samologist, you know. The job requires certain basic skills: creativity, patience, flexibility, a calm nature and good observation skills. Familiarity with random curve balls is a plus. Providing haircuts, a double plus. It turned out my middle child status, college study, jobs, and the pile of bald dolls to my credit, provided me a good foundation.

But I had a lot more to learn.

During the years I like to think of as earning my Masters in Samology, the curriculum was tricky and ever-changing: I found when The Weather Channel showed up on TV, we were in for stormy weather – and it wouldn’t be outside; a wardrobe du jour of underwear on backwards suggested we'd be taking a mad dash up the street. The words “January” or “Everybody” pretty much meant take cover. Now. I learned every joke and discovered singing a song about sunshine really could make the sun shine, and finally understood sometimes it was simply time to sit and hold hands.

Though Samology is a unique and specialized area, I met experts in the related fields of Joeology and Connerology who proved most helpful. These specialties are often confused because they look similar to the casual observer, but a good Edologist once told me a Samologist is distinctly different. Still, we have some commonality and sometimes find time to collaborate.  

After almost 17 years on the job (and nearly doctorate level, I am inclined to think) I’d sum it up this way: The job doesn’t pay particularly well, the hours are long and the vacation time is lean. But there is plenty of job security and some benefits I’ve learned I can’t live without: a rollercoaster ride of surprises every day (ok, maybe a few I could have lived without), hours of free entertainment, the best smiles around, not to mention up to 5,000 hugs each and every day.  

How can you possibly beat that?

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Imagine that

“Put your hand here,” I direct as we stand outside Westminster Abby. “Where?” Tony asks. “Here.” I say, continuing, “Think about it. In 1066, another man likely had his hand on this very spot as he helped build this place. Who was he? What did he look like? Did he have red hair? Was he kind to his wife? Did he have kids? Do you think that guard over there is distantly related?”

Tony shakes his head responding, “How would I know?” “Don’t you think it is interesting to imagine?” I ask. “Not really,” Tony responds, dismissing the question. He is far more interested in how this monumental cathedral was constructed without the benefit of modern tools. He sees the math of the structure, but not the art, he hears the history, but has little interest in imagining the story. He is literal; I am abstract. I wonder if he has any imagination.

But I am wrong to wonder.

I wake to an alarm set for 2 AM in the dead of winter. “Get up.” I hear. “Nooooo,” I respond.  “It’s too early. It’s toooooo cold!” But Tony insists I come. He hands me boots and a heavy coat to put over my pajamas. We head out to the icy January cold to a telescope set up on the pond. There, completely alone in the vast darkness of the sky he reminds me it is the perfect night for viewing Saturn and its rings. Or was it Jupiter and its moons? I mostly remember the beauty of the night and the way his face lit up as he introduced me to the sky.

There are subsequent visits to this spot: I see moons and rings, dead stars, twin stars and constellations, and learn how to find the North Star. “The very first stars you see at night aren’t stars.” Tony explains. “They are likely planets. The one with the slight pink tinge is Mars. The very bright one low in the sky at dusk is Venus. It disappears into the horizon long before morning.” 

I ask, “Do you think there is life out there?” “Could be,” Tony says, “You never know.” And goes on to explain certain basic conditions are necessary to sustain life. He talks how he once dreamt of working for NASA and building childhood rockets and spacemen. And I see in him an imagination big as the sky.

Still later, the word autism enters our vocabulary. “What does it mean?” I ask. Well, many things I am told. One statement in particular stands out: a lack of imaginative play.

“Ring-ring” says Sam one afternoon months later. I echo, “ring-ring?” Immediately Sam smiles and grabs a banana to his ear. Knowing my line I follow with, “No, Sam can’t come to the phone right now, he’s too busy.” Since I don’t have a banana to talk into, Sam hands me his. When the banana is eaten, he talks into his shoe. “Mommy. Talk,” he directs. Feeling a little like Maxwell Smart, I pull off my shoe and say my line. Sam smiles, satisfied I understand the game.

I watch him draw imaginative swirls and figures “What are you drawing?” I ask. “Windows” he says. His windows are bright and almost surreal, surrounded by many colorfully intricate shapes.  Abruptly he switches to another drawing. Again I ask, “What is it?” “Snowflake” he says without stopping or looking up. And within the billows and details I see it: a snowflake like no other. I watch his deliberation as he chooses his colors and ask, “Where do you get your ideas?” “From your imagination,” Sam scripts from an old Elmo video. He pauses to clarify, “Is in your head.”  

Today I search for an idea and my imagination is hopelessly lost.

And then I remember these moments and know: It’s in the giant bolder in a far away place or up in the sky; it’s in a passing snowflake or a in box of crayons. It’s in my shoe or just beyond the window. It surrounds me. I just need to lift my head and look around.

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Planning for the future: the basics

Not so long ago, the topic of succession planning came up at work.  As the name implies, it a corporate system for replacing senior management people when they the eventually leave their position.

This got me to thinking about home. We are sort of a mini corporation with Tony and me as part of the senior management team and Sam likely viewing himself as CIC (Child in Charge). Now that I've established our structure, the next step is a plan. 

This involves imagining what Sam’s life might look like one day; a pretty daunting task to be sure.

Because of the magnitude of that assignment, I’ve decided it best to start with the very basics: what Sam likes. So here goes: a quick summary of Sam’s favorites as reported to me last night by Sam. Trust me, this is important stuff to know.  

Favorite color:           Red

Favorite food:            Pizza

Favorite dessert:       Chocolate cake (Chocolate ice cream will do. Coming up closely from behind,

                                     chocolate ice cream.)

Favorite movie:          Shrek 2

Favorite teacher:       MaryKate

Favorite school:         Nashoba Learning Group

Favorite fruit:             Apple

Best friend:                Mommy (Sorry folks, I’m not relinquishing my spot easily.)

Basketball friend:       Dante

Favorite cousin:         Cosmo (Does my brother’s dog count as a cousin? I vote yes.)

Favorite sport:            Football

Favorite girl:               Mommy and Fiona (We are in a dead heat. Hmm.)

Favorite boy:              Sam (Why am I not surprised?)

Favorite place to go:  Nantucket

Other place to go:      To infinity and beyond (Good luck getting there.)

Best place to swim:    Big waves

Car to drive:                Red convertible (Need I say more? See below.)

Favorite season:         Summer (No surprises here.)

Favorite veggie:          Carrots (Really? Could have fooled me.)

Favorite salad:            Arugula (Don’t forget the dressing.)

Favorite game:            Wheel of Fortune (Still waiting for the $500,000+ he's won to date to show up
                                      I figure it takes time to secure that armored truck...)

What to do when

    you are bored:       Tickle Daddy (Preferably when he is sound sleep.)

Favorite song:           You Are My Sunshine

Favorite activity:       Sleeping (Judging from the number of times he was up last night, I question the 

                                    validity of this answer.)

Favorite pet:               Dog. (Preferably big.)

Favorite dog part:      Feet (Yes, it's true. Sam has a foot fetish.)

Best toys:                   Woody and Buz

Favorite TV show:     George Lopez

Most admired:            Shrek (One of my older blogs pretty much explains this one.)

Favorite thing:            Squeezes (Coming up as a close second: big hugs.)

Number of daily

    hugs/squeezes:      5,000 hugs. Every day. (Free advice: start early.)

Favorite day:               Saturday or Sunday (Did you really need to ask?)

Fun thing to do:          Drive the car to go shopping (Close second, go to Papa’s house.)

Favorite book:            The Cat in the Hat

Favorite author:          Dr. Seuss

Best book character:  Sam I Am (Come on. Did you really expect a different answer?)

Shoes or flip-flops:     Flip-flops (Barefoot is even better.)

Favorite flavor:            Chocolate (Was there ever another flavor?)

Favorite saying

  (this week anyway): Don’t give up Mommy, you need to go on.
                                      (Indeed I shall as, long as I can.)

Stay tuned. There’s lots more to come.

The Monday night run

I turn to Sam and catch a dark expression as flits across his brow. So subtle, it is almost imperceptible. Did I imagine it? I watch more closely, searching his face. Nothing. Maybe I was wrong. Sam finishes his dinner without event and heads off to another room.

Moments later I hear a primal scream. Sam runs to the kitchen, dropping quickly to the floor in a loud thud. His scream morphs into a low and steady wail. Rigid, he props his body up with his elbows, his feet erect, high above his head. He tensely curls his legs toward his head and then straight up again.

“Sam, where do you hurt,” I ask. No answer.

Lost in some other place, he doesn’t hear me. He jumps up, crying as he runs in manic circles, eluding my grasp. I manage to get close enough to drop Tums into his mouth, hoping I’ve guessed the source of his distress. Hoping relief will come quickly.

Perhaps because I’ve ventured too close, he runs to the door. “Please don’t go.” I implore. “Please stay.” He pauses for a moment, almost listening, almost hearing me. But I lose him again as he runs to a different door. Before my eyes and within my reach, he bolts. And I am powerless to stop him.

Hearing noise Tony emerges. “Get him!” I direct, hoping Tony can run fast enough. Not convinced he can, I run to my car to follow.

By the time I reach the end of driveway, Tony is leading Sam back home. Surprised at the quick turnaround, I see why: Sam’s run is broken by a fall. His knees and elbows are badly scrapped; there are gashes on his hands and legs. “Bandage?” he asks hopefully, tearing up again. His earlier distress has been replaced by a more immediate need. He watches stoically as I clean and wrap his wounds.

Order is restored. The time lapse is so brief, I almost wonder if it happened. But his bandaged knees confirm the truth. I ask Sam what happened. “Did you hurt?” I ask. “Yes.” He points to his abdomen. Once again I remind him I can help and he shouldn’t run. “No run” he echoes, dismissing me as he drifts back to his world.

A few minutes later I remark rhetorically, “It would be so much easier if you just told me what was wrong.”  I don’t expect a response. I’ve never gotten one. For this reason, his reply catches me off guard. He glances up ever so briefly and flashes a quick, sly smile, saying:

“Get real, Pinocchio.”

With that I pause, unsure whether to laugh or cry. I shake my head and settle on a bit of both.

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Parting the Red Sea with a chance of snow

I wake to the bellowing words, “No school!” The alarm clock reads 6 AM; time to start the day. I respond today (and most Mondays), “It’s Monday.  And yes, you have school.” This inevitably kicks off the Monday morning word volley:

No school. Yes school. No school. Yes school. No school. Sam. It’s Monday. You HAVE school.

That topic put to rest, Sam heads toward the bathroom saying “Mommy, Red Sea.” “Red Sea?” I ask. “Yes. Red Sea.” He responds.

What are we talking about? Something biblical? Imaginary? Random words? I probe, curious: “Do you see the Red Sea?” “Yes.” Sam answers.  “Where?” Sam stops and vaguely points. Now completely perplexed I ask again, “Where?” He pulls me into the bathroom and hands me a tube of Crest toothpaste. “Red C” says Sam as he shoots a look suggesting I am not very bright.

The Crest logo does indeed have a red C.

“Red C. Brush your teeth. Brush my Sam’s teeth.”  Says Sam. “Wouldn’t it just be easier to ask for toothpaste?” I ask. But there is no response. A question of wardrobe has emerged in its place.

“Get dressed. Pants. Socks.”  Maybe a shirt would be nice I suggest. “Yes shirt. Blue shirt. Yes, blue shirt. No school. Mommy! No school today!” Says Sam, kicking off a second word volley:

Yes, you have school. No school. Yes school. NO school. YES school.

I pull out my secret weapon by asking: “Don’t you want to see MaryKate?”  Sam brightens, “MaryKate. Yes. MaryKate.” Sam is very fond of MaryKate. She has been with him since day one at his current school and he is loyal. It is a toss up who he will one day marry: MaryKate or Fiona from Shrek.

The school issue resolved we are off to another topic.

“Scratch my itch!” says Sam. “Where?” I absentmindedly ask. He pulls down the rear right side of his underwear, exposing half a derriere. “Butt.” He waits expectantly and adds, “Scratch my butt.” Is that in my job description I briefly wonder. No I mentally confirm. Absolutely not. I do not scratch butts. “Scratch your own butt and pull up your underwear,” I direct as I make an exaggerated expression of distaste. Sam smirks and laughs.

“Snow.” He says, changing the subject once again. “I don’t see snow.” I say. He points out the window, “Snow.” And adds hopefully, “No school today?” Again I state, “I don’t see snow. Do you see snow?” “No” he finally admits, “No snow. Is rainy today. School?”  “Yes school,” I say definitively.

In an effort to help ease the transition back to school I segue: “Would you like to know the plan today?” I ask? “Yes! What’s the plan?” He asks eagerly.

“First go to school. See MaryKate, Alanna, Crystal, Missy, Tom and Heather and everyone.

Come home. See Kait. Then see Mommy. Is it a good plan?”

“Is a good plan.” Says Sam, adding “Sam school. Mommy work. Daddy work.” “Yes,” I confirm. “Everyone has a place to go and it is good.” Resolved to Sam’s satisfaction he wanders off mid sentence. I am dismissed as he returns to his world; that place only known to him as another week unfolds.

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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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