Sunday, April 30, 2017

He Keeps Surprising Me

My son's communication device has afforded us many moments we might otherwise have missed.  "Alligator, frog, bug" means "I want to watch the Princess and the Frog."  "Pig, porcupine, elephant" is how he lets me know he'd prefer to watch "Sing."  Some movies require a more direct approach.  He'll fall down and say, "Oh no!" if I pick the wrong one, but a fist bump followed by a fa-la-la-la-la means "Big Hero 6."  Using this method, I can usually figure out what show he wishes to see.

This past week, let me say, my fifteen year old and I had a disagreement.  We both took ourselves to our rooms to calm down.  Paul took his communication device and punched in the words "Love Faith, love Mom, Paul Love, eat food, love Mom, Love Faith, Paul love."  (It happened just before dinner).  

I thought an older sibling imitating Paul, typed in the words, but the words worked for both of us.  The next day, I met with Paul's teacher to visit a site for his schooling next year.  She asked if we'd put any new words in his communication device. (I hadn't).  She informed me he'd punched in, "Paul sister Bonnie come home today."  Bonn wouldn't be home until Sunday but still, the sentence made me think, maybe he did write the other note too.  

Still, much of Paul's ability to communicate is dependent upon the rest of us thinking about what he's thinking and more importantly, why.  Last night, I took him to Faith's play. Her school put on "Once Upon A Mattress."  After the show, Paul clapped enthusiastically, and stood up and clapped and yelled when the King took a bow.  He even ran over to shake the King's hand. 

The next day, I puzzled over why he found the character of the King so appealing and it was so obvious, I wondered how I ever didn't see it.  The King in the play is mute until the end, and spends his time using sign and gestures which his musician and jester interpret. He identified with the King. 
Now I wish I'd taken a picture of Paul with the King, but it does give me an insight into how he sees himself, and probably how he sees me...I'm guessing I'm the jester. 

All of which leads to why it is that this family needs Paul, all of which leads to why I wanted to share all of this as a story.   Bill Nye, science guy recently spoke with a panel about population control and the need to penalize families who have more than whatever it is that now is considered reasonable via policy.  My son would be in that stack of the unreasonable number, and I object to the idea, much less the presumption entailed in that discussion, that some people are extra, that some people are unnecessary, and that some people should decide how many children other people should have.  I object to using force of law to hurt those who don't agree with such "enlightened" policies.  

We would never get to Paul in that world.  We would never get to most of my children, and my life, and my family's life would be poorer for it.  However, returning to only focusing on the one child we know will not be a world player as it were, Paul is the one society might come to think most easy to whittle out because of his condition. 

Let me say,  Paul has an extra chromosome. Paul himself, is not extra.  He is not part of the surplus population, and he is not a drain on society, he is a breath of fresh air.  He is a gift, designed to reveal to the rest of us, to remind the rest of us, about what is and is not important.  He makes sure everyone comes to the table to eat.  He always wants a bed time story and prayers, he always wants a bath and he always picks and gives me a flower if he sees them when we're walking to the bus.  He dances with abandon, he enjoys slapstick and adventure movies and musicals, and greets  his sisters and brothers as if he hasn't seen them since forever. 

If there's extra beyond the genetic replica of a chromosome in a person with Down Syndrome, it's the gift of being able to love easily and love well.  I would say to Bill Nye, and anyone else who views my son or anyone else with a permanent mental and physical disability as extra or unnecessary, the world has plenty of people who work, plenty of people who are very smart, but it needs every person it can find, willing to love easily and well. 

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