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Changing the script

Life is a game where the rules change as you play

By Regina Walker

I recently returned to work so I am again busily involved in managing schedules so childcare and school and work all exist in a perfect harmony. Organization and order have usually been my strong points. I loved doing puzzles when I was a kid and the sense of relief and accomplishment that came with fitting the last piece of the puzzle in its place was worth all the effort and time that came before. Before I had children, I assumed they would be like puzzles. I would put the effort and work in and by the time I sent them away to college, the last piece would be carefully and lovingly put in its place. They would be complete and whole and ready to conquer the world. And I would have succeeded.

Like most parents, I had a script; hopes and expectations for both of my sons. Zachary is incredibly smart. He is in a gifted school program and is an avid and talented chess player. He loves to read and has a wonderful sense of humor. I read every article and did all the things I thought a parent was supposed to do to nurture and support his development. I have even taken a bit of credit for his achievements and allowed myself to indulge in pride. I, of course, did the same for Sam. We own every Baby Einstein DVD and I even had a whacko bassinet that pumped in the sound of a heart beat and electronically rocked at precise intervals when he was an infant. But Sam has taught me an enormous amount. He can't follow my script. The pieces don't quite fit. I had to either abandon my pre-fab hopes and expectations for him or change them. I have decided to do the only thing I authentically can do and follow his script.

Each day begins a new chapter that ends with a new cliffhanger. We are writing it as we go along. His developmental delays are our outline but he fills in the rest. I do things differently with Sam. I have to. I follow his lead and he leads me into the unknown most of the time. And often times I must remind myself that the story of Sam's life that I had written before there even was a Sam separate in body from me is actually fiction. It was not the story that was meant to be.

Sam actually is a puzzle. He has many diagnoses so therefore in my mind, he has none. He has been labeled as being Autistic; having Pervasive Developmental Disorder, a Speech and Language Delay, a Communication Disorder -- and there are more but that's all I can remember for now. I have labeled him "Sam" and the rest remains a mystery. I have tried to embrace Sam in his uniqueness yet I still struggle with a sense of sadness and fear and grief that I allow myself to occasionally indulge. But it's been like building up muscles I never realized I had.

Sam makes me work. I have to think outside the box. There are no parent guides to direct us. and though that frightened me immensely at first, it is actually now an awesome relief. I was never very good at following other people's advice, though I often sought it out because I was afraid to trust my own instincts. Now instinct is all I've got and it is a pretty powerful thing.

Sam makes me face my fears and come up with new solutions. I must travel streets and roads without a map. Sam takes me to places where no roads exist so we build them together. We are charting our own way; composing our own story. And he has made me stronger. Because other disappointments and challenges can't compare and I have finally learned what reality is. My fear has become far less powerful because I have come to realize it offers me nothing. Bravery, they say, is doing it, whatever it is, despite being afraid. And we are doing it. In our own weird, awkward way. Some days I try to bring Sam out of what appears to be his own little world into the "real world". But I visit his world, too, and I have realized there is no one answer, no one real world.

Recently I kissed Sam good-bye as I saw him off at his school bus. "Good-bye Sam. Have a great day."

"The name is Sammy Whammy."

"I am sorry. Have a great day at school Sammy Whammy."

"It's okay Mom. It will be alright."

And he turned and took his seat on the bus and smiled the most exaggerated smile through the window as the bus pulled away.

And there went Sammy Whammy. And the journey continues. And it will all be alright.

I have learned much about myself as well. I have learned that I can be dealt some unexpected, scary stuff and be able to deal with it. I didn't always think I could. I used to feel I had to keep myself safe. I believed I wouldn't be capable of dealing with truly difficult situations. But now I think I can because I have to. I may not be great at it but I get by. And I guess that is all I can hope for. One page at a time.

mmo : december 2005

Regina Walker is a social worker and writer in NYC. She can be reached at cswcasac@aol.com
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