Showing posts with label celebration. Show all posts
Showing posts with label celebration. Show all posts

Thursday, May 23, 2013

The positive trend


It’s been a few weeks of steadily improving behavior. I think this requires a celebration. Or a footnote mention on the nightly news. It may not sound like much but in our world this is huge. It means we may be breaking a difficult cycle. Or maybe it’s just summer in the offing that makes me feel more optimistic. Whatever the reason, I'm hoping for more sunny days ahead.

We are emerging from a three-month streak of unpredictable behavior. That, too, may not sound like much. Trust me it is an eternity.

When we are within the aura of good, one day rolls into the next with little notice. After a long enough streak we begin to take it for granted. Even expect it. But the very minute – no, the very second I see a certain dark look linger in Sam’s eyes everything changes. Suddenly the entire future becomes uncertain. 

Breaking a cycle of challenging behavior is difficult. For Sam, self-control is grueling work. The angst in Sam’s eyes during these times is heart wrenching. It is emotional to watch him crumble into failure. It is exhausting to bear the brunt of his sudden anger. It is frustrating not knowing why. 

Each day I take a deep breath and force myself to believe we can get there again. Each morning I wake and think, maybe today as I bargain with every god. I watch the pain and determination in Sam’s eyes when he barely hangs on to control. I see his brief relief when he has made it through with his composure intact; when he makes all the right decisions. Those are moments of triumph you can’t imagine.

We document the difficult days, looking for trends and those elusive clues. We note the good days with equal importance. Maybe as a means of getting through the tough stuff. Maybe it’s my inner Pollyanna. Or all the positive re-enforcement we’ve been trained to provide. 

On marking our first successful week in a while, I asked Sam, “How was school?” “Is good,” He said. I prolonged the conversation by offering, “You had a perfect day. How you feel?” Sam continued to busy himself on his iPad, glancing up only quickly. He seemed disinterested.

But then I saw it: the corners of his mouth began to slowly turn up into the sly, smug smile he reserves for the important moments. It is a smile that says, “I did well.” It's a very contagious smile. “Feel proud,” he finally said.

Sure, there will be tears in the days ahead. But there will be triumphs, too. Life is too short to miss the triumphs.

Wednesday, March 27, 2013

About those lights


My nephew Charlie once told me, “I’m all about the lights.” Born on Christmas Day, he knows a thing or two about lights. Christmas is the season of lights. We know a few things about lights, too. Sam was born on the fourth of July – another day full of illumination and festivities. I guess you could say we are a family to bright lights and celebrations.

Since Sam’s first birthday, we’ve had a tradition of watching the fireworks. The beauty of those colors lighting up an intensely dark sky coupled with Sam’s birthday is extra special. Sam thinks every firework shot that night is exclusively for him. Come to think of it, I kind of think so, too.

In the spirit of lights, we have a newer tradition: Autism Awareness Day on April 2. This year will mark our fourth year attending at the UMass Campus.

It’s our kind of event: It’s big. It’s got lights. It illuminates the sky. It relates to us. Perhaps most important of all, Sam relates to it. There's a lot of blue and Sam's favorite color is blue.  Like the fourth of July, he is convinced those blue lights are just for him. And they are for him. We’ve come to see this night not as a “celebration” of autism but rather as a celebration of our Sam.

Every child deserves to feel celebrated. For that reason we've instilled in Sam that he is everything we want him to be. He deserves that security; that affirmation he is loved.  That knowledge within our home he defines joy and perfection.

April 2nd is our opportunity to send that message once again loud and clear to Sam by attending the Autism Awareness event at UMass. With old friends and new friends and friends we’ve yet to meet we will remember to honor all that is right in our world beginning with Sam.

We hope you’ll come.