Wednesday, February 29, 2012

Random Joy

Do not enter, Mommy!

Number 22. 

It's a gray elevator.  

It's a blue elevator.  

Elevator bread store.



Oyoh!  Oyoh!  

Ayo ayo ayo!

Red... red... red... red... red...

Enjoy... your... meal.

Vacuum intake nozzle!  

Wondering if I've lost it yet?  If you're a regular to this blog you know I already have.  Nope, these are things Ryan spits out at random.  Well, some of them make sense if you were there.  Actually, almost all of them make sense to me.  Every time we see a "do not enter" sign on the road (about ten times on the way to therapy) Ryan says "Do not enter, Mommy!"  I must respond, or he will repeat it until I do.  I know the elevators, and the elevator bread store is the Clifton Robinson Tower for all you Baylor types.  Went there to get my parking pass right before we went to the bread store for the first time, and well, it stuck.  Red... now that one's cute.  Anytime he sees a flashing red stop light, he says "red" with... every... blink.  Every time my microwave goes off, he says "Enjoy... your... meal"  with the space it takes to roll across the display, because my Mom's does that. Yeah, we don't see her but about twice a year.  He's pretty amazing like that!

My personal favorite is "vacuum intake nozzle".  It's a new one, and it's awesome.  Totally random.  I'm not sure where at all it came from, and he spouts it off, usually while stimming.  It's a happy thing, so I guess it's okay.


That's where the rubber meets the road with so many things.  When we were first figuring out that something was up with him, I was quite frantic that he NOT stim.  At all.  It was something we tried to discourage, mostly because of my "this can't be happening" attitude.  He stood in his room, hitting a hanger on a doorknob, and stimmed until he was sweaty when he was about 2.  At first it was cute.  two hours later, it was scary.  While there are still things we avoid, and we try to curb too much of this behavior before it gets out of hand, or when he's stimming on something dangerous (like the wheels of the van as I drive away after dropping him at school in the morning) we try to distract him.

But for the most part, it's cute.  He's cute.  If you saw him flap those hands, stiffen his head and shoulders, and hum, you might think it was strange at first.  But then you realize after a while that it's part of who he is.  It's how he says "DUDE!  This is so COOL!"

Honestly, it's one of the cuter things about his issues.  It's part of Ryan being Ryan.  No, I didn't say Autism is cute.  One of the behaviors, when coupled with that sweet, traffic-stopping Ryan smile, is dang cute.  No, Autism is quite frustrating.  It's quite scary.  And as long as it's so a part of who he is, why can't we see the cute in it?  I mean come on... vacuum intake nozzle?  That's downright random funny-ness.  And there are different stims.  The happy stim, for a very short time, on something random that won't always be around makes me smile.  For a long time it scared the daylights out of me.  A lot of things... the uncertainty of the future for him, the fact that he still doesn't tell you his name, that he doesn't seem to sense danger... these things are frightening.

There are so many things that need work.  There is so much to exercise patience and caution and planning over, that I'm finally getting to a point where I can say it.  He's cute.  And some of the different things he does make me smile.  Yes, we will keep teaching him to behave, to curb the behaviors that aren't socially acceptable.  But if we spend ALL our time around him nitpicking, we'll miss him.  We'll miss how cute he is, how sweet he is, and be serious all the time.

I've spent a lot of time reading article after article on Autism and dealing with it, and have come across quite a few people who say that every parent, upon diagnosis, must allow themselves to grieve for the child they thought they had.  I agree that there is a sadness, even a mourning.  There is mourning that takes place, and it is long... but it should not be for the child.  It should be set aside for the fact that we were so wrapped up in what we wanted that we almost missed the child we DO have.

Now I'm not saying that none of us should ever be angry, sad, frustrated, or ever have a negative feeling.  I'm not saying that we should stop therapies and figuring out what causes this mess.  There is nothing I can personally imagine that is more disheartening at best than watching your child suffer.  I can't tell you how often I wished I could take away his fears.  How I wish I could give him my ability to deal with the dishwasher running while I eat.  Or how many times I've been to the doctor with him to find out something was terribly wrong and I had no idea, because he can't tell me.  I can't tell you what it's like to constantly be hanging on to and prairie-dogging over where your child is.  I've had countless nightmares of losing him in a crowd.

So why... why in the world would I relegate myself to a life of completely focusing on negatives, never ever allowing myself to laugh at something cute he does?  Just because he's different... his behaviors are often very different... doesn't mean I'm sentenced to a life of stoic correction.

We're learning to try to see more through Ryan's eyes.  We're working on focusing on being more purposeful, more prepared.  But it's a hard balance between protection and prevention and remembering to live life as much as we can.  Because you know what?  His birthday is coming this spring.  He'll be seven.  Yep.  SEVEN.  Yesterday he was three.  The day before that he was throwing up his first birthday cake (remember that, Mom and Dad S?) and the day before that he was born.  I remember the joy of having him... even the thought of having him... and vaguely remember the innocence that we slowly lost with each missed milestone.  The pain of realizing the first time, in a little kid church class, that he was very much different than the other kids.

We've all felt enough of it that when we can safely relax, see the innocence and humor when we can, we should.  Keep the plates spinning, keep seeking treatments, social-storying, preparing, but be careful to hang onto the kid-ness while we can.  Because someday, as I realized when Ryan stimmed and said "it's a school" as we drove by the intermediate school, they'll be in that school.  Then middle school.  Then high school.

I'm not discounting the pain or the frustration... but my word, don't we lose enough of their childhoods to symptoms, red flags, and therapies?  I'm  We're going to promise each other and Ryan, Richie, and Maelynn that we'll hear their words, their preferences, and though we're not able to understand everything, we'll do our best to let them be kids.  We'll celebrate the times when we see the twinkle of excitement in their eyes, no matter how few and far between they may be.  Because he's our boy.  He works so hard at so many things that we take for granted, and we are proud of him.  Whether he waves at me and hollers "Hi Mommy!" like Richie when he's happy to see me or jumps and stims and hums, I'm thrilled that he's happy to see me, however he shows it.  And while I hold him as he suffers from whatever it is that's making him kick, scream, hit, and cry, I need to be able to close my eyes and see that snapshot of his grin.  To hang on to the beautiful boy God made him to be.

Close your eyes
Have no fear
The monster's gone
He's on the run and your daddy's here

Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy

Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better

Out on the ocean sailing away
I can hardly wait
To see you come of age
But I guess we'll both just have to be patient
'Cause it's a long way to go
A hard row to hoe
Yes it's a long way to go
But in the meantime

Before you cross the street
Take my hand
Life is what happens to you
While you're busy making other plans

Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better

Beautiful, beautiful, beautiful
Beautiful boy

~John Lennon

Thanks be to God for our beautiful boys and beautiful girl, and all they teach us.  

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