Tuesday, June 26, 2012

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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Tuesday, June 12, 2012

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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Friday, June 8, 2012

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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