Tuesday, December 4, 2012

TIME for a Change.

We have Autism Awareness bracelets.  We have a yard sign.  We have two autism walk t-shirts apiece, and will acquire more.  We have signs for our cars.  We have puzzle piece Scentsy warmers, we have blue lights in our porch and carport lights.

I have and will continue to write about autism and how if affects our family.  It's what I know about, because it's what I live.  It's so much of our lives.

The truth is, having a child with such a prominent difficulty, whatever it may be, ranges from devastating to exhilarating.  So many times you hit both extremes of that scale in one day... sometimes in one moment.

There are times when he is screaming, yelling, and is in a swirling torrent of terror, frustration, and anger, and then, quick as a flash, he turns on a dime.  Two or three times in the past week, he's been in full meltdown mode, complete with real tears, when he turns to me and says "Hi Mommy" just like he hasn't seen me all day.  One time recently he even said, "Why are you crying?"  Well, I was crying, so I kinda thought he might be asking me.  So I explained.

The next time he did that, I began to think that it might be because he doesn't remember why he was crying.  See, Ryan hardly ever uses the correct pronoun.  "You" means "I" or "me", and so on.  So I wonder... does he even know what's going on at that point?

I really don't know.

There are so many things we just don't know.  But in the midst of them, we still keep plugging away.  Day by day, drive by drive, session by session, moment by moment, we keep going.  Keep learning about him and helping him learn about us.  But there is still so much that could likely remain unknown. The big improvements are few and far between, and they're often subtle.  Things any other parent would completely take for granted.  So easily lost in the bustle of life.

Today, I had a few great moments.  One was talking to the mother of Richie's best friend from school.  Such a sweet mommy moment I just haven't had the pleasure to experience, though Ryan has been in the same school since he was three.  I mean, just look at that face!  How can you not want to play superheroes with this kid?

Then, in the grocery store, Maelynn fell asleep so hard that I could only hold her.  I had forgotten to get chicken, and with my temporary load, mother volunteered to go back and grab some while I stood still in the produce department.  Her soft, baby-chubby face snuggled into my shoulder, I was still enough to hear the music.  "My Favorite Things" played, and as I nuzzled her sleepy face, the ache of holding her nearly three-year-old, completely asleep body faded in an instant.  These times will grow fewer and farther between, but that sleepy-snuggly stuff is definitely one of my favorite things.  That sweet face just learned she loves "spwinkoes" on her ice cream right before I took this:

And then, as I opened his folder this afternoon, I saw Ryan.  Well, there wasn't a picture of him, but he had placed his heart inside a folded piece of construction paper with a Christmas tree cut from wrapping  paper on the outside. 

Just as we were getting past the shock of that wonderful gift, I saw this: 

He was pretending... yes, I said PRETENDING... to cook.  He made one of the dogs a plate of a plastic food: a chocolate donut, an apple, and a potato.  He sat it in front of her and said, "breakfast" and then went about his "cooking".  This is the same dog he's not been able to tolerate in the past, and has recently not just tolerated but hugged her and told her he loved her.  Just this year he's started telling me... looking straight in my eyes... "I love the Christmas tree."  

The mountaintops are at times scarce, but when they do arrive they are wonderful.  There are long stretches of time filled with much work and frustration when it seems as if we're doing nothing for him. There are times we wonder if life is getting any easier for him, and there are definitely times when we wring our hands over the treatments that are out of our reach.  We definitely agonize, think, study, and pray over our decisions.  

I will keep coming here, sharing our story, hoping that we can share the hope we find with someone... anyone... who needs to know they're not alone.  To give someone a sliver of light in an otherwise dark, scary place.  I've often said that picking treatments and avenues of thought, even, for our child is like looking for a nickel in a six-lane freeway while blindfolded.  

But I will also come here and write as long as these children and adults are misrepresented.  As long as they're turned away at the door.  As long as parents are told that their children "cannot."  As long as there are people who think of these kids as a lost cause, too much trouble, or, in an equally painful blow, completely ignore their presence, hoping that they and their parents will slowly get the hint and fade into the black.  

Because he's their brother.  He's their hero.  He's my firstborn.  He's my button-pusher, my elevator lover, train fanatic, and Elmo fan.  He's my drummer, my noisemaker, my snuggly little tickle-bug.  But he also has autism.  

I try not to jump on the bandwagon of complaint and mud-slinging.  But I do believe in speaking the truth in love.  I also believe that we must defend those who are not as able to help themselves.  

That said, I am hurt and disappointed in the least to see that TIME magazine has referred to my child and so many other people "crazy".   Yes, the article itself is nicely done.  But in this day and age we know that so many folks don't make it past the title. In other words, we know better. If we know better, we should DO better.  

I'm not making a plea for vengeance. That is actually quite the opposite of what I'm hoping.   I'm simply looking at those of us who know and love people with psychiatric issues to look at this and heed it as a call to action.  As a hundred-foot tall neon sign that says "WE ARE NOT DONE."  In my life, that means no more even thinking that maybe this blog doesn't matter.  It may only matter in the same way a single feather matters to a pillow, but it does matter.  That smile you give and hand of friendship you extend may not prevent anyone else from ever being lonely again, but it means the world to that person, and will likely surprise you with its blessing. 

Accepting that different or difficult child or adult into your classroom, your Sunday school class, your church service, or other community or friendly event matters.  It may not change the world, but it very well may make a day.  Or change a life.  

Thanks be to God for the wake up calls.  

1 comment:

  1. Oh. Wow. I find it amazing how certain differences are treated as nearly sacred to the mainstream media, while other differences are lightly mocked (as in the title you mention.)

    *hugs* Thank you for your sharing your stories. I love hearing about your sweet family.


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