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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