Tuesday, October 9, 2012

A Step Back... or is it?

Life threw me a little curve ball yesterday.  Okay, two.  Alright, so one was my fault.

We'll start with my mistake.  Eric and I spent part of Saturday culling out the boys' closet and drawers, removing things we believed to be too small and switching out shorts for warmer clothes.  I put all Ryan's size 7 jeans on one shelf and the 8's on the shelf below, thinking surely the smaller size would fit for a while, then we'd move on to the larger without getting the storage tubs out again.  Great idea, no?

In my defense, trying on shoes and clothes is no fun for Ryan.  By "no fun" I mean shaking, crying, screaming, why-are-you-taking-things-off-and-putting-them-back-on confusion.  So we just don't do it.

Fast forward to Monday morning.  It's time for dressing, and we're a bit tight for time.  So I grab a pair of the size seven jeans, help him put them on, and snap them.  They were a touch snug, but again, time was an issue.  The last time I put something on him that was too little, he actually tugged at it and cried, "take it off!"  He was home for at least ten to fifteen minutes after I dressed him, and he didn't complain in the van ride over.  So I assumed we were good.

About 12:45, his sweet teacher calls and I can hear him screaming in the background.  Yes, it was the pants.  His whole world was upside down because I didn't want to take time to get the poor kid another size of pants, because then I might make him late and throw off his day.

So I picked the kid up and hour earlier than usual and got him some different pants before therapy.  The whole time we were changing his pants he kept repeating "thanks" and "good job mom".

Sweet kid was grateful that I was getting him the right pair of pants.  What a guy.

Fast forward to the end of therapy.  I had a little something different and more fun to do while we waited on our biggest brother, so I brought the iPad and iPods to keep the kids somewhat educationally entertained while I did my thing.  They were in a tote bag so that Ryan couldn't see them.  I handed them out after he went in the room.  But it was on the way home that things started to get interesting.

Usually, he finishes his homework before he gets the iPad for a certain amount of time.  Then he plays with his drumsticks, maybe along with his favorite drum-related video, "Animusic".  He really does play along.  It's pretty neat.  After that, it's dinner, then a little VSmile, then pick up toys, then baths, stories, water, brush teeth, bed.

Only he found the iPad on the way home and began playing it, even without his volume-control headphones.

Then I had to take it away to get him to do homework.

Then I attempted to return to routine, and had to throw it off again for a worthy errand.

Just walking across the street to look at a house for my Mom.  That's all.  No big deal.  I offered to let him take the iPod, mostly because I had to concentrate a little.  It was either today or Saturday, and since it's marching contest season in Texas, I would have all three kids in tow no matter.

He lost it.  Just getting him to walk out the front door to do somewhere had him shaking, screaming, crying, hitting... completely melted down.  The same happened upon our return.

It's these times when we realize how much the routine has become part of who we are.

I had just been visiting with one of the future ABA therapists about this.  How we do know Ryan better than anyone, but describing life with autism in five minutes or less is just inpossible.  I've had several people ask me over the years how autism impacts us.  Describle how it affects him, how you do things.

And the best answer I can come up with is to ask a question right back.

Describe for me, in your own words, the color blue.  You cannot use any other colors as helpers or descriptors.  Describe it to me as though I've never seen a color.

You'd need some time.

Yes, Ryan's set of behaviors that cobble together into a diagnosis has changed so much about our lives. Yes, there are days when we want to scream and run for the hills.  And of course we appreciate the question!  But there is no simple answer.

All of that is partly because Ryan was our first.  But most of it is because we love him.  We just do what we do and how we do it because we love our family.  There are days like yesterday when the different is brought into a bit clearer focus. Actually, it sucker-punches us in the gut.

See, we get to rocking along in a routine.  Then something comes up that we want to do, and sometimes we just do it.  There have been times when it was okay.  Then there are times when it feels that by asking him to complete the task that you've carefully explained, that is just a few minutes' worth of different, is the most evil thing you could have inflicted upon that precious soul. I asked him to walk across the street out the front door.  That is all.

But for some reason it's a big deal to him.  That shocked, horrified face when I told him what we were to do still shatters my heart, even in my memory.  

He has... we have... come a long way, but we still have a long way to go.

And it's an awfully long journey to travel with arms folded, bitter, and refusing enjoyment, peace, and blessing.

So we cling to Romans 8:28.  We remember that this is the day He has made.  We remember that we are made in His image.  We remember that He does not make mistakes.

We reach out, take His hand, and keep walking.  Not just with determination to finish, but with determination to savor, enjoy, remember, and cherish.

Thanks be to God for his sovereignty.

No comments:

Post a Comment

Related Posts Plugin for WordPress, Blogger...