Friday, December 9, 2011

Truth from the Island of Misfit Toys

This morning, after taking Ryan to school and removing coats, etc. I walked in the living room and started "Rudolph the Red-Nosed Reindeer" for the kids.  You know, the old stop-motion one.  I had planned to turn it on, then once the kids were happily playing and watching, I'd go sort laundry.  Then this three-year-old boy with curly blonde hair looked up at me.  He completely ruined my plans with those big, blue eyes. So I sat down on the couch, computer to the right, Richie snuggled on my lap, thinking I'd do some quick email checking while we watched. I opened the notification of a new blog post from "A Diary of a Mom".

It seems that we live in a world where not just other people think different is wrong.  It seems that we live in a world where parents kill their children brutally to avoid being "ruined".  You can click HERE if you'd like to read the post I read.  I must warn you, it will break your heart. It rocked me.  It shook me.  It broke my heart.

It called me to action.

I come here every now and again, and in my opinion not enough, not to impress you with what little writing skills and creativity God has given.  I come here to offer hope.  I come here to explain.  To write my own little message in a bottle to not just help others who do not understand what it's like to live being different, but to offer some comfort... to share my experiences, good and bad... with parents who have kids like ours.  The hope is that my little offering will comfort someone, make them feel a bit less alone and isolated even for a moment.  I have been there.

I have felt the pain of throwing out all your expectations... some you didn't realize you had.  I fight every day in different degrees to enjoy these three babies and this life.  Folks, in case you hadn't noticed, I don't know anyone who has it easy.  Those we think should be the happiest, by earthly standards, are often the most broken.  Just click on over to the entertainment section on any news source.  You'll see pain in staggering amounts.  Broken relationships, illness, death, bankruptcy, greed, anger, hatred... no matter how it's packaged or Hollywood-ified it's still pain.

Please don't think I'm trying to lessen the difficulty of those of us who live on the spectrum.  I'm not.  I live there too.  But honestly, my littles are different, too!  I feel like at times I've given birth to mountain goats, banshees, and future MMA fighters.  Where did they get this stuff?  I mean, Eric and I are... well, we're pleasantly boring!  Then, at the risk of sounding egocentric, look at me.  I've always been different... a bit out there, a bit off the mark. Never one too concerned with what everyone's wearing, doing, being, watching, etc., probably to my own social detriment.  I'm content in jeans and a t-shirt in the summer, a long-sleeve t-shirt in the winter.  I'm one of those annoying people who wouldn't go see "Titanic" because everyone else was.  Socially clueless by choice, maybe?  Anyway, I've had people try to kinda rescue me from my awkwardness.  In some ways those people have helped a lot! In others, it just hurt to be told I was so different that I needed someone's help to be acceptable.

But even when I thought I'd conquered the need to be like everyone else... my "look at me, God, I took care of that... aren't you proud" moment ended last spring.  The magical time when that baby boy is a little boy comes with a price when you have special needs.  All of a sudden he's bigger.  Harder to handle.  When the rest of the kids are running around playing during adult meeting time at church, he's still in need of the assistance you'd give a 2 year old.  So I found myself on the playground with my son, entering a crossroads.

"But I just want to be in church, God.  That's a good want.  That's what You want for me to have!"

*shakes fist at sky*

No, sweet one... that's what you thought I wanted.  I really just want you to be open to ME.  My will, not yours.  Even when your will looks like it should be right.  I want you to learn to wallow in the joy I have given to you, not your disappointments.

That short-version of the answer I received over months of agony was life-changing.  Last spring was the beginning of stripping away everything, rethinking what we believe, what we want our kids to know, and placing back the things we need.  Along with that was scrubbing all the preconceived ideas from our hearts and minds.

Which ones, you ask?

Kids should be potty-trained by at least age four.

Kids should be able to sit in church, color, and make a minimum amount of noise.

I should be in church whenever I can, signing up for everything offered to truly be a good Christian.

In order to have a great marriage, we should have a date at least once a month.

Said date should involve a sitter, dinner, a movie, or something similar.

The list goes on and on.  There are things we've had to rid ourselves of as preconceived expecations that I cannot put into words. This means that when Ryan is making gutteral waa-waa-waa stimmy noises, giggling like there's no tomorrow, really acting... well... weird, I have to join him.  Stop a minute, see his sweet baby face, the joy in his eyes, and though I don't understand it, what will it hurt to giggle with him?  Repeat after him, even?  In the appropriate setting, what's the problem with that?  Nothing.  What's wrong with making our son feel loved and accepted in his own home?

Embrace it.  Embrace the different.  Help him understand the world.  Help the world understand him.  What's harder about him than the other kids?  Learning how he loves.  How he feels love. This morning, when I repeated his stimmy noises after him, I wish you could see his face.  His eyes brightened.  His smile was huge.  He clumsily fell into me with complete abandon, wrapping his sweet arms around my neck, humming.  I embraced him, in his world, and maybe just this once... but he embraced me right back.

In a moment we were back to the futility that seems to be getting ready for school.  But I was more refreshed, more ready for it, because I took a moment to feel his heart.  To see him as a flawed, clumsy, gangly human just like me.  Doing the best he can, whether his best is good enough by worldly standards or not.

So here I sit again, hoping and praying that God will bless these words, flawed though they are.  That someone might find hope... be inspired to keep going through one more meltdown, one more trip to the hospital, one more disapproving glance by the others around them.  I've felt them too.  I've spent a lot of time in my house, wishing I could shut the doors and protect us from getting hurt again.  I've felt the pain of different.  I've been angry because what I want isn't so bad... just for my son to have peace and be able to communicate, to know danger and run from it, to understand some social nuances like not laughing at crying and when to not run up and hug random people.

Yes, what I wanted or didn't even realize I wanted sounded good.  It was hard to let go of.  But friends, I stand here on the other side, promising that it's better over here.  No, it's not always easy.  Yes, we still have meltdowns.  I still want to help us overcome.  I still want there to be a prevention for Autism, for there to be better treatments and more understanding.  But I have to live here.  I know it's not a popular idea, but you can choose happiness.  You can choose to get up and try again.

If you can do nothing else, you can share your story.

As I finished reading that post on Diary, I glanced back up to see our familiar red-nosed friend enduring suffering at the hands of his father, who just wanted him to be like everyone else.  To cover up his red nose, because comfort isn't near as important as self-respect.  Shortly after seeing the other reindeer making fun of Rudolph and seeing him banished from the reindeer games, Richie's sweet voice floated to my heart as he turned to me and said "That's sad, Mommy."  

Dear Lord, please help us all to embrace our kids' red-noses.  Help us all to see how amazing they are.  How needed they are in this world.  Help us to reach out and offer hope to those who struggle with how different they or their kids are. Because it isn't easy, Lord.  Please help us. Please "create in me a clean heart, O God, and renew a right spirit within me." (Psalm 51:10)

Thanks be to God, the giver of all good things!

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