Monday, December 3, 2012

Trumpet and Cup

It's that time of year again.  We've found a home for the toys we've outgrown, and they're in the van waiting to be delivered today.  As I sorted through the storage ottoman in the living room, I came across  the top to a music toy that was one of the things Ryan seemed to really enjoy as a baby.

The little plastic trumpet that sits atop a totem pole of musical instruments was a gift from my aunt and uncle, and it was the perfect band director's kid toy!  All three of our babies enjoyed it.  If you think about it, there's no wonder why Ryan enjoyed it.  It plays music, has a little keyboard at the bottom, a tambourine in the middle, a drum, and of course the trumpet rattle with a happy face.

As I sorted, I happened to turn it over and notice that our last name is still partially on that top piece in black marker.  Odd that it would be on one piece but not the rest.  Then I remembered why.

Ryan was maybe between 18 months and 2 years old when he became a little attached to this toy.  He was my first child, and I didn't think too much of his hatred of stuffed animals.  Well, hatred is a strong word.  It was more of an intolerance.  He had so many nice ones, but every time I tucked a stuffy into bed with him, he instantly sat up and threw it across the room.  I can actually remember joking about it and not worrying too much with it.

I can also remember the morning that we couldn't get the trumpet toy out of his hand to go to church.  Seeing a fit... or a meltdown... in the future if I fought it, I quickly took it from him as he screamed and scrawled our name on it, handing it back to him.  I just didn't feel like fighting him about it.

Sometimes Ryan's baby things are the hardest things to look at.  They're in the before time.  The time when all we knew were people who thought our baby was the cutest, sweetest kid around.  No problem.  But as he grew, things changed.  It was so hard to listen to people who tried to tell us that something was up.  And now it's so hard to accept the fact that we didn't know.  It's hard to remember things like this little trumpet and the stuffy aversion and see so clearly that everyone who said anything was concerned.

But we didn't know what to do with that information.  There is no handbook.

We were on a teacher's salary.  Our doctor had his opinion of what we should do, and somewhere in between denial and money fears, we didn't pursue those avenues.  At the time we felt horribly guilty for that, but we felt horrible about everything we did and didn't do for him.

We did get speech, occupational therapy, and behavioral therapy from ECI.  We did our best to absorb everything we could learn from those in-home sessions, and took so many things from those early days that we still use every day.  We read, we searched, we played with him, we took him places, we talked to him.  We snuggled him, loved him, and did everything we could to be good parents, and we still do.

Now we have two more kids, and for these two milestones seem to magically appear.  They talk to and with us, call us mommy and daddy, play with each other, beg to play with us.  They show off for us, saying "watch this" and performing feats that surely they believe would amaze even the bravest of stunt men.  They ask for what they want with words, and the only times they've hit themselves is when they were trying to be like their hero.

The more I see the contrast, the more I live with Ryan, the more I see that for Ryan, autism is just a name for his set of behaviors.  It's a ticket to getting the help we need, and it's less of a kick in the gut and more of a bridge to understanding him and helping him understand the world.

There are so many of his traits that endear him to us and those who take the time to know him.  The quirkyness is great.  When he lays his chin on my shoulder from behind and whispers "I love you", when he says "you will tickle" and lays across our laps, wanting to be tickled, when he rattles off movie quotes and sings songs a bit unintelligibly, when he lays his head on my shoulder... in so many ways we can see his love for us.  The way he hand-flaps as he stims actually makes my heart smile!

But the anxiety... the upset... the yelling... the inability to tell us what's wrong... the inability to accept change... the slavery to routine... the things that seem to have him trapped at times... those are the things I wish he didn't have to deal with.  Those are the heartbreaking things.  His face when he's confused and scared over something as simple as the wrong jelly in his sandwich or doing the bedtime routine out of order is wrenching.  No child should have to be that afraid of anything... much less something so simple.

This is our reality.  This is our cup.  It's Ryan's cup, but it is also Eric's, Richie's, Maelynn's, and Crystal's.  It is his grandparents', his aunts' and uncles', and his church family's.  Everyone who loves him helps us drink a little of the cup. Everyone who extends a hand, volunteers in CE, everyone who loves on and helps another family with autism helps us drink our cup.

Even you, by reading and allowing yourself to be educated about these things, are helping us drink this cup.

So, too, has everyone who tried to tell us there was something going on.  Everyone who has ever worked to help him integrate into whatever was going on, everyone who has prayed for us.

Thanks be to God for those who help us drink, and for the scrawled markings on a simple toy that reminded me of the intricate weaving of our lives with others.

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