Monday, September 24, 2012

The Big Question (just don't look for an answer)

"Kids, dogs and husbands: they'll make a liar out of you every time."  ~Mae Jackson VanVranken, my Granny

One only need to get married, have a dog, have kids, and promise that they always do this when thus happens to find that my Granny was right.  She spoke this cheekily, of course, because she loved her husband, kids, and animals a ton.  And honestly, I can't think of anyone who didn't love her to pieces.  Yesterday at church, Granny's little saying rang true with Richie for sure.  He who always trots down the hall, thrilled to be back at church, cried when I dropped him off for CE.  

He never does that!  He loves getting to go to church, and most of the time, he cries when we tell him it's time to go! 

The week before, it was Ryan.  When I was called in because he was refusing to do anything but lay on the floor, after coaxing, bribing, cajoling, and insisting, he was finally in his chair but fussing.  Okay, so he was hitting his head with his fist and making a terrible sound somewhere between a grunt and a tribal yell.  

What in the world do you do with that? 

I've promised to exercise our zoo pass and take the whole family every Sunday so that they can use that as a reinforcer to keep him in his seat.  He has an aid for the class who is as experienced with autism as we could hope for, and she's quite honestly golden.  She's a gift straight from heaven for our family.  But the hard truth is that not everyone can deal with the behaviors my dear boy dishes on a daily basis.  And the other hard truth is that I don't have the answers.  There are no easy, sure-fire instant keys to compliant behavior from Ryan.  He's doing better, but we have a long way to go.

The hard truth is that, no matter how I frame it or how many cute puzzle pieces I glue on it, or how many smart, inspiration autism memes I reblog, it's still what it is. 

I can type until my fingers fall off and I still wouldn't have Ryan pegged.  We see the difference all the time.  Richie and Maelynn are a completely different set of ability and personality, and most of the same things that work when calming and drawing other typically abled kids to participate works.  They're like other kids... they want you to be proud of them.  They want to do the best, they want to show they can do the best.  They call me to "watch this, mommy!"  They call me to see how high they can build a tower, how fast they can run, how nicely they jump from the ottoman to the couch.  When I or a therapist asks Ryan a question, they bubble over with the answer.  

Ryan sits back and lets them.  

This is just a tiny part of what we deal with, and it doesn't sound like a big deal.  

The truth is that it's not that big of a deal until you start to think of how we teach children to do things.  We put stars on a chart to show who has the most.  Why would we do this?  To compare.  They're supposed to want to be the best.  And for most kids, the gold-star approach to education works.  Whether or not you use actual gold stars, it's happening in classrooms all over every day. 

We play games, racing to the finish.  Whether it's Candy Land or Monopoly, sports or music, there's always a game.  A competition.  A comparison.  And intrinsic motivation is simply a means to the end, which is, of course, being the best.  The biggest.  The brightest.  The most amazing, the most in tune, the most precise, the least flawed.  It's all about comparing.  To be competitive, there's a little bit of "look at me, I'm better than ____" in there somewhere.  

My autistic kid is not concerned with what the rest of the world is doing.  This is beautiful!  I love it!  It's actually one of my favorite things about him.  Every time he wears a button-down shirt, it must be buttoned to the very top.  Hot outside?  Who cares!  Others don't wear that?  Psscht!  He doesn't even notice.  He is who he is.  

That's wonderful... until it's not.  

None of us realize how much we care what others are doing on a daily basis.  I would not have even entertained this thought before Ryan.  If everyone in a crowd is talking loudly, you talk loudly.  If everyone in the crowd suddenly stops and begins whispering, nine out of ten of us would likely start to whisper.  Ryan wouldn't care.  If he wanted to yell, he'd yell.  I didn't even realize how much my brain does in every social situation... how much I'd been programmed to speak when spoken to, look others in the eye, or even just acknowledge someone who waved or said hello.  

Consider now, if you've been involved in such a thing, any kid Sunday school, VBS, or in our case, CE that you were involved in or taught.  

Put someone in the mix who doesn't care what others think or what they're doing... who needs a clear if/then to convince him to do something he doesn't want to do... who needs a clear routine to follow every time... and think about how that would go.  And keep in mind always that my descriptions are static and are always an attempt at explaining a world that, although I live in its midst, do not come close to understanding.   

It takes work.  It takes time.  It's heart wrenching to see your child in a position to not even remotely enjoy something the rest of the family holds so dear.  I look around catch myself envying the ability to drop off a child and go to your own class.  To have the only thing standing between my family and church being my willingness to get up, get dressed, and drive.  

It's hard to not get angry. 

It's hard to not give in to the anger.  

It's tempting to fold my arms and, in my heart, shake my finger at those who judge Ryan or who take this for granted.  

But a cooler head leads to a wiser heart. 

Most of the time, a lack of understanding results from a lack of education.  And honestly, all I can do is share what I know and be willing to listen and learn.  I worry about the other kids in the class.  I worry about their experience.  I worry about what my son is taking away from that experience.  I'll give you three guesses at how much I can do about that, but you'll only need one. 

Not a thing.  I can do nothing about how others perceive Ryan's behaviors.  I can answer questions as they are brought to me, but I have no control over that part of any experience.  The harder part is that I can't always answer the questions.  So often I meet the questions with a stuttered response that ends with something like "It is what it is" or "it takes time to set a routine."  The truth is so often closer to "I have not a blasted CLUE what to do, and this whole situation just HURTS."  

If I can't understand that others are going to react how they will, and all I can do is my best, how then can I expect others to go out of their way to learn about my Ryan and the thousands of other children like him?

If I'm not willing to rein my feelings and open my heart to others' perceptions, feelings, and questions, how can I hope to successfully demystify autism anywhere, anytime?  

If I get my feelings hurt and completely withdraw from society, keeping my child in a bubble of comfort and low expectations, changing environments every time there's a perceived threat to his ability to be who he is, how have I helped him grow?  How have I grown?

So we must always continue to dance the tricky steps of balance between protection and chance, between pushing to reach potential and comfort and freedom to be who he is. We must remember to be understanding and loving to all- not just Ryan- and not just those who can deal with all the parts of who he is.  

If we want less judgement, we must be less judgmental.  

If we believe that God created us all fearfully and wonderfully, then we are all called to a certain level of understanding and tolerance. And this does not just apply to those of us with a diagnosis.  

I urge you to be part of a body of believers.  It may look different for your family than it does for others, and that's okay. Everyone has a different set of circumstances. 

I know it's hard.  But I promise that you can come here and see that you're not alone.  I promise that somewhere, someone else is feeling the same way.  If we don't step out and attempt the give and take dance of community with others, we've given in.  Laid down.  Given up.  Let not even autism, but perceptions get the best of us.  

I promise you that, Lord willing, I will keep standing.  I'll keep coming here so that even one of you can see that you're not alone.  I sat, before this God-given resolve to take a stand for our family's participation in a body of believers, with nothing but Google before me, typing in things like "autism Christian parenting" and "autism church participation" and every other combination of words you can imagine, and I came up with nothing.  

So here I am.  And here I'll be.  Because we need each other, you and I.  We need to know that we're not crazy and we're certainly not alone.  

Thanks be to God for you!

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