Saturday, February 14, 2015

"Look at Me."

It began with a discussion about labels for people with handicapping conditions, Down Syndrome, mentally handicapped and other common terms from the past on Facebook. 

My son is mentally handicapped and mentally challenged. He has Down Syndrome. Because I worked with the handicapped as a young adult and heard the word as a medical definition, I never minded mentally retarded until the word retard became a common slur. Now a days, it's a forbidden word in our home, as I don't want the stigma.  But I know labels matter.  It's important to know the reality of our son's condition, and the hurdles we face in teaching him and caring for him, so I have no pr
oblem with saying my son's intellectual capacities are limited, they obviously are. 



Anyone who looks at him can tell. He doesn't speak as much as a two year old, and he's six. He's not potty trained. He lacks a sense of safety and has to be held by the hand in public to ensure he doesn't just run. The problem with mentally handicapped, mentally challenged is the same problem with the labels Down Syndrome, idiot, mongoloid, and Trisomy 21 and any other label ever invented to describe a child with his condition. It only tells something of the story, but people tend to hear it and think it is all of it or that it is so much of the person, there is nothing else worth discussing about people like my son, or necessary to know. 


What someone who doesn't know Paul can't see are his talents and loves. He loves to sing loudly whenever the mood strikes. He dances and loves swimming. Every chance he gets, he plays with his stuffed dinosaurs. He goes outside with his brothers and sisters and never wants to come in no matter how cold the weather. He raids the refrigerator for any piece of fruit that hasn't yet been consumed. 
He's not emotionally handicapped, he feels things deeply. When he's mad at his sister, he has a phrase which tells her, I'm ticked. He'll say, "Heh heh." and she knows it's an insult and screams which leads to him again saying very calmly, "Heh heh." He will put his hands to your face and say "Look at me." when he really needs something, and he's always wanting to scramble into my lap for a hug.

The other day, I said, "It's time to go." and gathered my keys and purse. He left the room. I began calling,"Paul!" as I kept organizing, "It's time to go." and he came back carrying a hanger with my coat. None of my other children have ever done such a thing.


The bottom line is a label is a tool, used to convey something descriptive about a person, just as titles are tools of language used to convey a level of accomplishment or a relationship; Dr. or Professor, Father, Wife, Mother, Mrs. But what makes a person a doctor or professor or parent or spouse of merit, is what lies beyond the title; the depth of knowledge, care, wisdom, comfort, expertise and love put into the role. With Down Syndrome, the title is given via genetics from before birth and the person with that title spends their whole life trying to teach everyone around them, there's more to me than that, look at me.

"Look at me."



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