The other side of hope

It’s not like there was an “aha” moment when I knew. It was a gradual realization “normal” wasn’t in cards us; the realization this wasn’t a temporary situation. We would not be one of those families whose child had “recovered.”

Maybe the realization came from finally having time to think. The early years were a complete blur: A whirlwind of doctors, experts, and therapists. It was an immediate immersion into a foreign culture with a new language and new concepts to learn.

A time when everyone had an answer; everyone had a program, there were endless anecdotal stories of success. Six weeks of this therapy or maybe that. Have you tried a sensory diet? Auditory training? Restricting gluten? Neurofeedback? Interactive metronome? Vitamin B? There was a seemingly endless list of interventions. 

For a thousand or two, we will "fix" your child. Hope was on sale and I was buying. Some helped a little, most not at all. At the end of each therapy, improvement was reported. Like the boy in the Emperor’s New Clothes, I didn’t see it. I didn’t say that out loud, though. I wanted to be wrong. I didn’t want to admit my hope was showing signs of tarnish.

Dozens of therapies later, I watched countless younger children acquire skills and pass us by. They did with ease what my child could not. I continued to hear stories of kids who bridged the gap and wondered, why not Sam? Were we doing something wrong? Kids develop at different times, I told myself. We’ll blend by kindergarten. Well maybe by first grade… or will it be second? It will happen.

Or will it?  

Now in his 17th year, Sam is beginning the transition process into adulthood. That includes guardianship at 18.  This legal act effectively proclaims Sam is incapable of managing his life alone; the unspoken words that this is forever.  

With that legal document, I will officially transfer to the other side of hope. And I ask myself now what? What happens when hope is gone?

I will remember to breathe. Cry a little. Regroup. Rebuild expectations. Search again for a place to fit in. Maybe redefine the word “normal.” Take another deep breath and move on. Find the joy in each moment and stretch it to a lifetime. Look for balance and hold tightly to my sense humor. Find a new star to reach. I will look into Sam’s eyes and know this is the same boy I have always loved and will always love. The boy who has made me and countless others smile.

I will build new hope as I close the door on one dream and open the door to another.

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Basketball Sam

There's a new passion at my house.

Late in the afternoon Sam heads to the driveway to shoot hoops.  He pauses for a moment, carefully considering the first shot. He goes into his layup position. And shoots the ball directly up through the hoop and then watches the ball gleefully as it makes its decent back down through the net. Since it went through the hoop twice, does it count for double points? No matter. Mission accomplished. Sam dissolves into incontrollable laughter. 

“Sam,” I admonish. “Do it the right way. Come on, sink it.” He smirks and casually throws the ball up, hitting the backboard. As he catches it on the rebound he announces, “Awww. You missed it.” Shooting again, he sinks the ball with ease. He lays up for a second shot and sinks that as well. 

“Come on,” I call out. “Three it a row. You can do it.”

And he can do it. I’ve seen him. But apparently not today. He is having far more fun playing the game by his rules and getting a reaction out of me.  

“Sam,” I say. “How are you ever going to play for the NBA if you shoot that way?”  He laughs, “Awww. Mommy is sad. Waaah, waaah, waaah.”  Hopeless, I think.

Sam is occupied so I leave for a moment to grab a sweater. I discretely check from my upstairs window. To my surprise he begins to play the game as it should be played, narrating his shots all the while:

“Jump shot!” he announces. Though his feet never leave the ground, he sinks it. From another angle he sinks it again, saying “Again!” When the next one skirts the rim without making it through he encourages himself with, “Nice try!” With the next shot, as it hits the backboard and ricochets back, he emits a low, “Not quite.” He repositions and sinks another and punctuates with a simple, “Yes!” He catches most of the rebounds and sinks the majority of his shots.

The words I hear are not his, of course. Somewhere he is playing with Tom, Brendan or Dante, echoing the words he has heard them say.

On my return Sam immediately heads under the net to toss the ball up and through. The Sam I saw through my window has disappeared. As he slyly glances at me his expression seems to say basketball rules were meant to be broken and mothers exist to be annoyed.

I read while he plays for another 15 minutes or so. The game ends when the ball hits backboard and he misses as it quickly bounces, picks up momentum and lands over the wall and deep into the woods. “Game over!” He announces with a smile. And into the house we go.

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Sam is sorry

“Mommy is nice

Daddy is nice

A kiss on your cheek.”

Most watching right now would be touched by Sam’s show of affection as he carefully places his hands on my shoulders and gently bends down to kiss my left cheek and then my right.  They may think me harsh for ignoring his sweet show of affection. He looks so very earnest and sincere.

Today Sam is contrite. He desperately wants to repent for his earlier behavior. He also wants his iPod. Sam knows the consequence for inappropriate behavior is the loss of one of his precious electronic devices. Most days that is reason enough to control his impulses. Today, those impulses overpowered him and his iPod privileges have been revoked.

So instead of trying to elude me and escape into his world of YouTube reruns, Sam follows me about the house like a lovesick puppy. He angles for sympathy and absolution. He figures if he plays it right, he’ll get his iPod back.

I watch him, expressionless as he places his hands on my shoulders again. Knowing the stakes are high he looks deeply into my eyes saying:

“Mommy is nice.

Daddy is nice.

A kiss on your cheek.”

A girl could get lost in those eyes, I think as he bends down to kiss both my cheeks for the second time. He asks hopefully, “iPod?”  “No, Sam,” I answer. “No iPod.” I remind him of his recent infraction as I withhold the affection he craves. He accepts his fate. Crest fallen, he wanders off. For a few minutes anyway.

But Sam isn’t one to give up; he tries anew:

“Mommy is nice.

Daddy is nice.

A kiss on your cheek.”

There is more cheek kissing, followed by a plea for a big hug. I am impressed with his perseverance. I remind myself it is imperative for Sam to understand the consequences. One day he will live with people who may not be so forgiving. He must learn.

Sam is unwavering in his quest for exoneration: 

“Mommy is nice.

Daddy is nice.

A kiss on your cheek.”

He ups the ante by adding more words to his kisses, “So sorry Mommy. Sorry Daddy.” Certain those are the magic words, he pauses briefly and adds, “iPod?” “No.” I respond.

Sam recites the rules of behavior. I acknowledge the correctness of his statement. He looks up somewhat expectantly, “iPod?” “If you are good, you can have the iPod back tomorrow” I respond. Sam looks despondent. I may as well have said one hundred years.

He also makes it clear I have responded incorrectly and tries once again:

“Mommy is nice.

Daddy is nice.

A kiss on your cheek.”

By now my cheeks have been kissed so many times I begin to think I am in a very bad European film.

As I watch his very sad face, I wish self control was less challenging for Sam. I wish for a better way to impress upon Sam the importance of appropriate behavior.  

And then I mentally prepare for a very long night. Because it will be very hard not to cave under the pressure of all those heartfelt kisses. I’m only human, you know. 


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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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