Monday, June 13, 2011

The words I fear the most...

I just don't know.

I really don't. 

As Ryan's mother, I'm expected to be able to explain him.  And I can, to a degree.  But there are things I cannot explain.  He can play "Twinkle, Twinkle, Little Star" in three different keys on the piano, and even learned the tag that is at the end of that cute little melody on one of our electronic baby pianos.  Learned it by ear.  But can't answer yes or no questions.  He can play a double stroke roll on a bass drum, but can't hold a pencil correctly.  We caught him, quite by accident, reading a whole book the other day out loud.  But when you ask him to do it?  Well, if you do that you'll likely be screamed at or just ignored... and ignored is at best. 

He has learned so many phrases from apps on the ipad, from movies, from little kids' shows, but "stop it" somehow eludes him when his sister pats his back.  He wants to be hugged tight by me or his daddy, but can't stand his sister and usually Richie to get on the same couch as he is.  He would walk straight into traffic, given the chance, but the sharks on Finding Nemo make him hide behind the couch.  He begs us to run the vaccuum, but then hides on the couch and watches from afar. 

When the notion strikes him, Ryan screams, squeals, and gutterally yells, contorting his face to match his frustration.  He has practiced almost to an artform the art of self-injury.  And thanks a lot, Nemo writers, for putting in the movie times when someone is injured and says "ow".  He smacks himself (even in a good mood) just to say "ow!"  Usually I can be patient and help him... to say "you're okay" calmly enough that he can stop... but other times he catches me so off guard... it frustrates me that I'm not used to it.  I guess I am to a point, but not enough.  I wish I could say I never raised my voice back, but... and I know it's awful... I can't. 

It all comes back to fear.  Fear that I can't handle this, or that the kids won't have a great time growing up.  I want them to have fun, to be happy and feel safe.  When you're driving down the road in complete quiet, or having quiet conversation, and the van is instantly flooded with a blood-curdling scream from the back end of the van, it's hard to stay calm.  And what do you do, other than ask what's wrong, ask what he needs, ask him not to do that... askaskaskaskask... and usually with no answer.  Or the answer is what you said, verbatim.  Even through tears.  And it's many, many times a day, and not just in the van.  Sometimes there's an obvious cause.  Many times, maybe an air molecule frowned at him... I have no idea. Therefore I cannot fix it, help it, and certainly cannot control it.

My mother, for as long as I can remember, has been my greatest comfort with skin on.  Hurt, scared, angry, sad... even the thought of my mom calmed me.  We're still very close.  I guess I wanted... no, expected... that I would be the same for my children.  But sometimes it just seems like he'd rather I went away.  Give him what he wants, and back away, thank you.  

 "Life here in the land of autism has forced authenticity upon our family."  As I read this in Diary of a Mom, I realized how right Jess is.  We are forced to the end of our ropes, forced to our faith, forced to truly rely on the knowledge of the character of God.  To cling to the truths we've known.  Remember that poster with the kitty hanging on to something... was it a branch, the handle of a basket, I can't remember... that said "Faith isn't faith until it's all you're holding onto?"  We're at the point where faith is having let go, been caught, peieced back together, and put back enough to know that it will happen again.  And each time you can hang on a little tighter, a little longer... but still fall and know a little quicker that it'll be okay.

"But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me." (2 Corinthians 12:8-10)  Never do I come to the cyber-paper thinking I have it figured out; nor am I naive enough to think that because I have strung together words that explain how I get through it mean I've figured a way around my weaknesses.  But the autism life has a way of stripping away the layers of uselessness, leaving you standing wherever you are, weaknesses and soul bwhether you like it or not.  The trivial seems more trite.  The surface-level unbearable.  Truth is a must, honesty a necessity, not merely a "should".  Autism in your family will force you to put feet to the things you profess to believe; to truly live by faith.

By Faith

By faith we see the hand of God

In the light of creation's grand design
In the lives of those who prove His faithfulness
Who walk by faith and not by sight

By faith our fathers roamed the earth
With the power of His promise in their hearts
Of a holy city built by God's own hand
A place where peace and justice reign

We will stand as children of the promise
We will fix our eyes on Him our soul's reward
Till the race is finished and the work is done
We'll walk by faith and not by sight

By faith the prophets saw a day
When the longed-for Messiah would appear
With the power to break the chains of sin and death
And rise triumphant from the grave

By faith the church was called to go
In the power of the Spirit to the lost
To deliver captives and to preach good news
In every corner of the earth

We will stand...

By faith this mountain shall be moved
And the power of the gospel shall prevail
For we know in Christ all things are possible
For all who call upon His name

We will stand...

Words and Music by Keith & Kristyn Getty
& Stuart Townend  
We cannot see the end of this.  But we choose to "hold unswervingly to the hope we profess, for He who promised us is faithful!" I was thinking this morning on my run about acceptance... and the more I thought, the more I dream of a place where not just the outward is looked past, but the inward... I dream of a place where all we can see in each other is what God sees through the wondrous filter of Christ... past our inner failures, inadequacies, and downright ickiness.  And such a place exists... it's called heaven.  Until then, we will stand for our children, we will advocate, teach, drive them to therapy, adapt for them, and make time to simply enjoy them.  Anything else would be a waste. We will fail, but we will try again.  We will stumble, but we will stand again. 
Nemo's over, and Ryan is dancing in his sweet way to the end credits.  He's already said "well hello star" and "goodbye star" to the starfish on the screen... And now, in whale, he's asking for a brown cookie.  So if you'll excuse me, I've fallen several times today and stood back up, and now I'm going to get my kids a cookie. 
If you haven't heard it before, thank you for joining me through this journey.  I appreciate you more than you know. 

1 comment:

  1. crystal, what a beautiful blog. i'm so blessed to read your words and get to know your heart and your family. i love this: "We're at the point where faith is having let go, been caught, peieced back together, and put back enough to know that it will happen again." blessings to you all!


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