Saturday, December 25, 2010

The Beauty of Each, Our Every Child

There is a documentary that's gotten a lot of buzz lately called “Where's Molly?”  A recent CBS news feature on it has been making the rounds on the internet.  I am assuming that many readers who are part of the Special Needs parenting community are familiar with it.  If you're not, you can see it here.

It's the story of a man’s search for his autistic sister, who disappeared from his family when she was 2 and he was 5.  She was vanished into thin air; "sent away" never to be heard from or spoken of again.  And then, some 47 years later he began to look for her.  And he found her.

I saw that video the other day and couldn't stop crying; rivers of tears just poured down my face.  And knowing that there are so many other stories like this one?  So many children that were just thrown away like yesterday’s rubbish?  Is beyond heartbreaking.

Last month we had our first parent-teacher conference for our son Jacob (who is on the Autism Spectrum) at his wonderful new school.  It went so well, and was lovely to see how fully his teachers and support team saw Jacob's strengths as well as his deficits.

But just before the meeting, when my husband and I were having a quick coffee together, he looked up at me and asked "If Jake had been born in our time, they would have called him 'retarded' wouldn't they?" 

And I had to say "yes."  No one would have looked under the language deficit, beyond the sensory seeking behaviors and seen his intelligence and humor.

If he had been my brother instead of my son?  He might have been sent away.  How sad that makes me can't even begin to be touched.

And then, tucked away in the back of the December 5th Sunday New York Times Style Magazine, there was yet another article, an excerpt from a book written by Allen Shawn about his autistic twin sister, sent away to "camp" when they were 8 years old (my sons' age) never to return. 

Unlike Molly, she didn’t completely disappear. Her family visited, kept contact.  But still, they lived apart, in separate worlds, her home lost.

And then I have been having even darker thoughts.   Because Jake's twin brother Ethan has been doing a school unit on immigration, he had to do a lengthy report on his family history.  He was interviewing me and I told the tale of my mother's parents both coming over on boats from Eastern Europe, through Ellis Island (the classic New York Jewish immigrant story). 

My mother's father's family right off the boat.  Literally.  On Ellis Island, 1920.
As part of this, I had to answer questions about who came over and who was left behind.  And while my grandfather's whole family came over, my grandmother's whole family stayed behind; they had a business they didn’t want to leave.  She was the only one who crossed to America.  And she lived.  And they all disappeared. 

Telling this tale opened up the story of the Holocaust to Ethan, who, at 8 is starting to be able to handle some harsh truths like this.  As I was finding gentle ways to talk to him about this, I wanted to make sure he knew this was not just about the Jews - our personal part of the story, the 6 million lost - but also to include the other 5 million, the long list of those considered "other," "lesser," "unworthy to live." 

And I listed Jehovah's Witnesses, homosexuals, and Gypsies, talked about the absurdity of using skin color as a measurement of value.  And then, racking my brain to remember who else was on the list I hit the disabled including "Mental Defectives."  I was remembering they were among the first to go, near the top of Hitler's "undesirables" list.  How he had "gas vans" drive around cities picking up the mentally unfit and disposing of them immediately. 

And I nearly lost it because I realized that meant Jacob.

That would have been Jacob, had we lived there, then.

Or if that were to suddenly be replicated here, now.

(Don't be complacent and think that couldn't happen.  The German Jews thought they were essentially regular German citizens, completely assimilated into society.  All it takes is a charismatic leader with really bad ideas, good spin doctors, and a strong military to back him / her up.)

And so I struggled not to let anything show on my face as I felt the full on horror of that scenario playing out in my mind while I blithely went on, deflecting Ethan from this too soon knowledge.

Stumbling over my words: “There are others on the list, I don’t remember exactly who, but that's not important. What’s important to remember is how wrong it is to judge whole categories of people by what they are instead of by who they are, as individuals.”  

The assigning of differential values to human beings because they belong to one category or another is fundamentally wrong in my book, and I work hard to convey those values to my sons.  It was ever this way with me, but has become even more so now, as I look at Jacob through the eyes of others and see how easy it is to dismiss him, to place him in a category of "lesser."

I, like so many other Autism Moms was particularly struck by one moment in the wonderful Temple Grandin bio pic on HBO this year.  When her mother says, fiercely "Different, not less.”  

And that has become, I think, for many of us our rousing battle cry as we seek for our children all that they deserve: dignity and respect; to be included in all that they want to be included in; to be educated BEYOND the lowest rung of “appropriate” - to be educated creatively and caringly to the fullest possible extent, so that they can achieve their highest possible potential.

And to never stop searching for what that potential might be.  Even when it is hidden inside an infirm, floppy body, or tied up in knotty language that tangles with every turn inside the brain. 

As more and more of these stories of hidden away, lost children come out, as I think of the many other times and places where children like Jacob would have been thrown away, I am so thankful for the time and place he managed to be born into.

We are nowhere near where we need to be, to truly be an open-minded society that sees value in every individual.  But still, it’s the best time yet that has ever been for being born different.

The gas vans are not coming for my son.

Not today.

And I find comfort in the knowledge that all of us folks in the Special Needs parenting community around the world are striving to make a brighter future real; to help everyone, everywhere see our children as different, but not less. 

To discover and to truly value the wonders that lie within; the beauty of each, our every child.

Note: This was originally posted at Hopeful Parents, on my regular monthly day there, the 10th of December, as "Value-Able."  But I had posted it very late in the day (you can read why, here) and I have strong feelings about this post.  It's another "big one,"  full of things I'd been mulling over for a long time before they coalesced into a post.  

I almost held it back, to keep it on my own blog, but I had nothing else to put up over at Hopeful Parents.  I take my commitment to that blog and community seriously, did not want to miss my appointed time, so up it went.  But now I realize, I also want it here, back "at home" with me.  So I am re-posting it here, with a few additions and tweaks.  And choosing today, Christmas Day, to put it up? A timely reminder to value EVERY child born.

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