Tuesday, June 26, 2012


If you've been reading for a while or if you know Ryan you know that elevators are a big deal with us.  Huge.  It's actually bigger than several things for him.  Kind of a love/hate thing.  If you're new to the Ryan and elevators phenomenon, you can catch up by clicking here if you like. 

Now that Ryan is doing better with trying new foods in ABA therapy, we're transitioning to conquering the elevator thing.  It's more of an issue than it used to be simply because he's older and bigger.  Picking up a sixty-pound, seven year old Ryan is much different than lifting a closer to forty pound, five or six year old Ryan.  His elevator thing has been to hit the button, spout "mommy will pick you up" nervously, and then hop around, all stimmy, flapping his hands and humming, until you pick him up.

Once Ryan's picked up for the elevator, his body screams fear.  Well, I say that, but it's really a fear-excitement kind of thing.  Either way, his whole body stiffens.  There's no need to hang onto him... he clings out of fear.  You can literally completely let go of him, arms outstretched and he will not hit the ground.  It's amazing how strong that kid is! Recently, in a hotel, Ryan had to get on the elevator without being picked up, but did not do so willingly.  Once on the elevator, he grabbed the handles and made sure his feet didn't touch the floor.  I think his cousin who's into acro yoga would have been proud!

It wasn't a problem to lift the little man until lately.  The older and bigger he's become, the more apparent it's been that we need to do something about this.  Ms. B offered, and I more than gladly accepted her precious ABA help.

Today, Ryan was rockin' the BARC.  And it went a little somethin' like this...

We're sitting in the hall, Eric and the littles and I.  Richie and I are working on sight words, and Eric is calling around trying to figure out the system for Ryan's eye exam under anesthesia.  Regularly, Ryan walks out of the BARC with Ms. B, exclaiming "level three!" Then he walks away to walk up the stairs to the third floor of the building... yes, going to the third floor is currency with Ryan.  So I congratulate and celebrate with Ryan, encourage Richie, then turn immediately to help when Eric has a question or needs my opinion.

Or has to deliver information I don't like, then we wind up discussing.

So it goes from celebration to defense.  Over and over.  Praise and encouragement, then to the sword and shield we went.  It wears on us, but it's life.  More and more we realize there must be the defense side.  More and more often we notice that we have to prepare when we're doing something new.  But at the same time, we have to continue to keep up with what's going on, keep the least restrictive environment, as they like to say in the education world.  We go from discussing things like how little he can truly communicate, how much different everyone's expectations have to be from a typical seven year old, straight to celebrating because he runs up to us stimmy-happy, bubbling over with "you did it!"

Then right back to "If they won't listen and understand that he can't tell them anything about himself... if they refuse to accept the fact that he won't keep a band aid on for twenty seconds or let anyone take his blood pressure, much less put in and leave alone an IV, I don't know that this procedure will happen."

When it comes to our kids, we all seem to have this ability to ride the coaster. One minute trudging up the hill, and the next minute careening down the hill and around the corner, shouting and celebrating, hands up, throwing ourselves into embracing the moment.  The next minute, we're back to throwing ourselves a completely different direction.

Over and over, Ryan would come by with Ms. B and her helper for the day.  Over and hover, he'd come up to me excited, saying "you did it!" Each time, I'd encourage him to tell me what he did.  Each time, one of the ladies with him would coach him to tell me, giving him every word.  Each time he wouldn't look at me, I'd take his puffy little boy hand, placing it on my cheek to remind him where to look.

Frightened of an outcome one second, celebrating a ride on the elevator or a bite of pickle the next.

The contrast is amazing.  Every parent does it at one time or another, in one way or another, I suppose. But today was interesting.  Not only was Ryan riding an elevator without being held (!!!) and taking bites of, chewing, and swallowing pickle (only tossed the lunch monkey once), but we saw in dizzying snapshots the reality of where Ryan is versus how hard he works, and how far he continues to come.  One second trying to remember what we want the surgeon, anesthesiologist, PA's, and nurses to know so that the experience next week will be as smooth as possible, the next minute hugging and high-fiveing as Ryan shows off, with help, his hard work.

One second, encouraging him to simply say "I rode the elevator" or "I ate pickle" and the next second trying to explain to someone who has never met him and sees only a blip on a computer screen or a chart why he can't tell you if this hurts, or if he's cold, or if he's scared.  Why he wouldn't care a button for a Spiderman toy but would flip over a Thomas engine.  Why we're making such a big deal of something so simple.  It's a simple thing, the EUA.  Under anesthesia, check his pressures, dilate and refract, then wake him up.  No biggie.  But it is for Ryan.

Will they listen?  Will they truly understand and take to heart our concerns?

Will Ryan know how awesome we think he is?  Will his brother and sister know how much we love them?

We sure hope so.  We pray so.  And we try to trust and enjoy the ride, we really do. But sometimes it just gets to be so much, the curves and the drops make our stomachs flutter.

But just before we lose it...

Just when we think we can't take it...

At 11:59...

He always comes through.  Always.  Often in a way we'd never have guessed.

Thanks be to God for Ryan's success today, and especially for ALWAYS coming through.

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