Sunday, October 20, 2013

Why Down Syndrome Doesn't Define My Son

What makes a person's story a success story? Is it fame, is it overcoming great challenges, is it genius?

If it is, Derek's story is a success story on all levels.

There is another component that I believe makes Derek's story a success story. That component is Adam's genius of communication.

You can see Adam's genius at work in the bond that he shares with Derek. You can also see Adam's genius at work in the way Derek is able to fully utilize and enjoy the gifts he has been given. His genius starts its work where most people stop. Adam had the desire and dedication to go beyond Derek's challenges, to learn who Derek is as a man.

I've seen the genius of communication at work in my life, and its power is amazing. I was introduced to this genius by the lady with the blue folder.

I met her when she visited my hospital room the afternoon after my son was born. Earlier that morning, I learned my son had Down Syndrome, and my emotions were still very raw.

When the lady with the blue folder walked in my room, I instinctively knew that folder she held in her hand was full of definitions, statistics and medical jargon. Wasn't being told your child had Down Syndrome enough to process for one day? The last thing I wanted right then was some stranger giving me an education on what having a child with Down Syndrome meant. She did give me that very education, but not in the way I expected.

She smiled and introduced herself as a social worker. I was struck by the way she smiled. It was the kind of smile that automatically spreads across your face when you see a mother holding a newborn child. In the few, short hours between the morning of my son's birth and that afternoon, I had already learned that the first thing people lose when they discover your child has a disability is their naturalness.

Yet, here she stood, fully aware of my son's extra chromosome, with that natural smile across her face. She no longer felt like a stranger.

I was starting to feel more comfortable about her going through that folder with me, but that's not what she did. Instead, she held it up in front of me so I could see the cover, and said, "Isn't she beautiful?"

Covering the entire front of the folder was a close-up photo of a young girl's face. She had delicate features, porcelain skin, and large, almond-shaped blue eyes. Her eyes were what drew me in. They almost spoke of all the beautiful and complex things that she was. She was no less than breathtaking.

Looking at that photo, I received an education that went beyond what having a child with Down Syndrome meant: A diagnosis may tell us something about a child, but a child will always be too beautiful and too complex for a diagnosis to define the whole of who they are.

My son is 6 years old now. He has cognitive and physical delays associated with Down Syndrome and has worked with physical, occupational and speech therapists almost his entire life. I have been through that blue folder front-to-back many times and know most of the definitions, statistics and medical jargon. The contents are dog-eared from constant use and reference. While this information has been very useful and helpful, it still doesn't tell me everything about my son.

It doesn't tell me how my son is thriving as a first-grader in an all-inclusive classroom with the aid of a teacher's assistant. It doesn't tell me he enjoys going to the park with friends, his favorite kind of ice cream is a vanilla shake, and how he could shoot baskets for hours with his sisters. It doesn't tell me what it feels like to be on the receiving end of his hug, or how his smile lights up a whole room. It doesn't tell me his favorite color is purple and what his favorite bedtime stories are. My son is beautiful and my son is complex. He has Down Syndrome, but Down Syndrome doesn't define the whole of him.

The genius of communication is a powerful gift. It can turn all of our stories into success stories. We don't need fame and we don't need to be savants to find success. What we do need is the desire and dedication to go beyond the challenges, whatever they may be, to find the music that is within all of us.

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