Tuesday, April 23, 2013


The past couple of days, autism has had me on the ropes.

The beginning, if you scroll down a bit, was Sunday morning.  Sunday afternoon was the biggest meltdown my husband had ever had to deal with by himself when he took Ryan into a store to use the bathroom before we left for home.

He was pretty quiet, then we got home, changed clothes, and started working in the backyard flowerbed.  What he wanted for dinner was not what we had to give him.  That started a whole afternoon of screaming, yelling, hitting, and of course... you guessed it... demanding.

I'm proud of us.  We remained calm, which is not at all easy.  We're talking a LOT of screaming, folks.

Monday morning rolls around, and Ryan's up and happy to eat his waffles.  Not happy to get ready for school, just happy to eat breakfast.  He did, by the way, eat dinner.  Go figure.  I did notice that he was pretty hoarse, but what do you expect after all that screaming?

9:30 or so rolls around, and the phone rings.  A quick glance as I pick up the phone shows it's the school nurse.


He is hoarse, says "Are you sick?", has white streaks on his throat.  Here we go.  Clad in my dowdiest laundry day garb, I headed out the door.  A glance at him told me that maybe he might be sick.  His aid, who knows him almost as well as I do, seemed convinced.  Okay.

Soon as he walked in the door, my sick son shucks his backpack and coat, runs to the living room, and starts chasing his brother and sister.  Then he's off to his room to play with his Toy Story toys.  When I went back to visit him, he spouted, grinning, "School is on a break for seven days!  You're sick!"


After a flurry of phone calls, discussion, and more than a little frustration, we headed to Waco early.  I am bound and determined for him to make his ABA session, and I am certain he's not sick.  But the nurse told me he was, and I felt like it was my duty to make sure the kid really wasn't sick.  Add to that the fact that if we could see someone in town, Ryan's medicaid would pay, but we had to wait for an appointment and miss our therapy session.  If we went to urgent care in Waco, we could make our ABA session, but it would cost us $50.

I drove the whole way talking myself out of being frustrated.  It wasn't working.

Once in the room with the doctor, Ryan was being himself.  Push every button, turn every knob, flip every switch, pull out every drawer.  All this while giggling and walking all over the place, asking when we'll go to the hotel, the usual stimmy questions.

Once the nurse had administered the throat swab, which Ryan rocked like a pro, the nurse left and the doctor came back.

Over the next ten or fifteen minutes, it became apparent that this trip to this doctor wasn't for Ryan.

He could tell we do our best.   He could tell in five minutes or less that we don't back down.  In a way that is best for him.  That we know him... and know more about how to deal with him... about autism itself... than he does.  He admits that doctors don't know enough, and weren't taught enough about autism in school.  He admits that he learns the most from moms like me.

And you.

And dads like you.

He urges me to keep my head up.  To keep going.  To not quit.

It's all I can do to keep my composure.  I want to cry.  I want to break down and fall on the floor, weeping over the frustration of today and a thousand yesterdays.  Over the relief of having someone who doesn't even know us look at me and tell me everything I needed to hear.

The poise he said he saw in me is something I seldom see in myself.  I see myself as a cross between "Pig Pen" from the Peanuts cartoons and a horse in a fire.  Jumpy, messy, scattered, and ineffective.  

I don't know what's next.  I don't know how to keep my own child from screaming until he blows out his vocal cords.  I don't know how to get him to tell a stranger his name.  I don't even know how to get through a day at home without a problem.

But I love my son.  I love his brother and sister.  And I can trust in the character of the God who set the planets in space and flung the stars in the heavens to give me the grace, mercy, and patience I need to do what he's set before me.  I can trust that he will forgive my mistakes, my frustrations, my sinful and selfish nature, and redeem my messes.

Thanks be to God for the ones willing to pay attention and encourage someone they know they'll likely never see again.  And for Ryan.

And for you.  Keep going.

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