Tuesday, December 10, 2013

Empty but Full

He lumbered out of the van, his usual, not in a hurry self.  The aid helps him out, and then I start telling her why we were late this morning.  In the midst of a flurry of explanation, frustration and weariness spilled over my cheeks.  Before I knew it, before I could stop it, I was a blubbering mess in the drop-off line.

All the way to school, after a morning of if/then statements, much self-injurious behavior, and botched transitions all over, I grumbled in my heart about every person who told me that I was overreacting at the beginning.

What?  Yes, so many people told me to chill, not to worry, he'd grow out of it.  His behaviors aren't that big of a deal, lots of kids do that.  And just look, I know so and so who read to his little boy for twelve hours every day and he only ate sea kelp and he snapped out of his autism.  Or the old one about how he looks just fine, how can he be autistic... or the one about how I spoil him.  That's my favorite.  Try making him talk to you.  Make him eat that food.  You're just being too easy on him.

If you ever... and I mean EVER... come across a friend or family member who is on the cusp of an autism or other diagnosis... PLEASE do not peddle false hope.

Oh, I know.  You'd never do that. And neither would anyone else intentionally.  And hey, I may have done it at one point too before I knew what it was like.  Before I was in the trenches.  Before I knew what it was like to watch my child lay his hand on a hard surface and pound it with his fist because I didn't have the preferred macaroni and cheese... or because I had to take away the iPad... or because he wanted milk and I wouldn't give it to him without calming first... or because he had to work with his therapist instead of play with trains.

That would be before I knew what it was like to have every last request met with yelling or grunting and hitting of his own head.

It was before I knew what it was like to have him run SCREAMING to his room because we told him to stop the low-grade hitting or go to his room and calm down.

It was before I woke up every day praying that we'd all make it through the day without as much of this stuff... or just that I could handle it in a kind way.

It was before I knew what it was like to wish that I could just have a day where he could simply talk to me about his life, his likes and dislikes, what he'd like to do for the day, without the screaming and hitting... or that he'd just understand conversation like you and I do.

It was before I answered the same echolalic question in rapid fire... the same question, same answer... until I just asked him to stop asking that one question.  But then felt guilty because he WAS asking, after all.

It was before I realized how out of control everything really is... and that control is definitely an illusion.

It was before I felt the heavy-hearted guilt of that voice whispering, "If you had just read to him more... if you had sought that one treatment... if you were more organized... if you had just followed up with that one guy you couldn't afford... "

It was before I felt the sting of being at the end of my rope and having done and continue doing all I feel I can without cracking, then having to change and tweak it all with the energy and creativity I don't have left.  Because it's then that those stories of someone who "grew out of it" or "snapped out of it" really hurt.

My son isn't snapping out of it.  He's eight.  He's likely not gonna.

And that has to be okay.

If someone comes to you hurt, needing to talk about what he or she fears is happening with their child, please listen.  Please listen with an open mind, and hold judgement.  Please save the inspirational stories for a time when they're less desperate.  I know you mean well.  I get it.  But let me put it this way... telling someone who is finding out about their child's autism about how so and so cured their child, so there's no reason to worry is like having not eaten for five days, then sitting down to a feast... of cotton candy.

There's no substance. No promise.  No surety.  And it will let them down.

It's a hard reality, but reality is hard.  Be kind, yes.  Listen and love.  And cry with them.  But keep the stories of how so and so cured their child and they "snapped out of it" for later, when they've got a better handle on reality.

Some would look at this view and shake their heads.  Faith!  Where is your faith?!

Here's my faith.  Right here.  Ready?  It might be different.  Brace yourself.

I prayed for years that it wouldn't be autism.  But it is.  My faith is in a God who is sovereign, not who can be manipulated by my carefully-worded requests or my sincere heart.  My faith is granted to me by the same.  My faith calms my heart, my fears, and gives me wisdom and grace and mercy.  It is a gift; not a talisman.  God is my father; not a vending machine.  Prayer and bible study and what little obedience I have is an outflow of the love of a sovereign, caring, loving God.  They are not currency, used to buy what I need.

I have faith that Ryan and the rest of us are woven into a painstakingly constructed tapestry.  I have faith that the things we go through aren't wasted.

I have faith that God has plans for Ryan... for Richie, for Maelynn, for me, for Eric, and for our parents.   For his sister and brother in law, for my sister and brother in law.  And I have faith in God understanding the things I do not... and in that he hurts with me, and with Ryan when he is upset.

This morning was hard.  The past few days have been out of routine and therefore very screamy.  Lots of self injurious behavior.  But it will pass.

Tomorrow, Ryan will wake up and he will still have autism.  I've begun over and over a quest to let go of my preconceived notions and to meet him where he is, for who he is.  It's still hard.  There will still be days when I don't know how much longer I can do it.  But at that moment, there is always hope.  The darkest night is before the dawn.  But I've given up hoping that the morning light will shine on a neurotypical Ryan.  

Instead, I hope the dawn will shine on a mama who embraces who he is and guides him to be all he was meant to be, lovingly and carefully.  And when I can't feel the hope, I pray that I'll keep putting one foot in front of the other.

And tomorrow morning will come, the schedule will be the same, the challenges will be there.  But so will faith.  The same things will likely occur, but so will the sun's light.  If God loves me enough to bring the sun, just close enough to warm but not close enough to hurt me every day from the beginning of time, surely I can lean on him for the grace to guide my son through this world.  After all, he has incredible insight to doing the mundane with joy.

Thanks be to God for Ryan's asking for a hug this morning when he saw Mommy couldn't take it any more.  And for the way his arms wrapped around my neck, and for letting him hang on for a minute in a way he usually doesn't.  Thanks be to God for that gift, because it's exactly what I needed to start over again.

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