Friday, March 9, 2012

Same old (or is it?)

With the glasses mess out of the way, now it's back to our usual challenges.  I say that, but there's this word, lurking in the background of my mind like the score of a horror flick.  Something's amiss.  We know it's part of autism, and it's exhausting to think about.

He's done that before.  


We had this licked.  


Oh, he hasn't done that in two years... 


Regression.

Once in a while, Ryan ratchets back a bit.  We had waiting down pat, and accepting no was going great, pretty much.  We had self-injury backed off to extreme cases (can't say it was gone), and now they're both back.  Unwelcome, but back just the same.  Now I'm not an expert, but it sure looks like the ugly "R" word to me.  Lost skill.  And we've added some things, like inability to stand the sound the catsup makes when it's almost out.  You know, that rude sound I'll admit we still kinda giggle or snark about at my house.  We noticed this when he began holding his ears as we pour anything... ranch, catsup, mustard, whatever... at the table.  He's stimming way more.

I hate for him that so much is just so loud and hard to deal with.  I wish I could help him better, but I don't know how to do much more than we do.  Routine and very clear boundaries, ABA therapy that we've found and can get for him, staying in contact with others who deal with him at school, therapy, and church, and patience.  Just bearing with him as we can.  Not that it's easy all the time.  It's easier at some times than others.

The other hard part is we just have to watch.  When I notice his elbows black and blue again from banging them, I know he's having a hard time.  Yesterday, he started self-injury over being asked to ask politely for hot chocolate.  He punches himself in the head and grunt-screams so hard you can hear the smack as his little fist hits his head.  I'd honestly rather he hit me.

One of the other things that scares me is that I can't pick him up for long.  I can't hold him to keep him from destroying the house for much longer.  Our kids aren't overweight, but they are solid.  No hollow-bones in our house.

In a few minutes we'll leave for the only therapy in which we've been able to participate.  In part because it's what we know exists in our area, partly because while it stretches the budget quite snugly we can do it.  But more than money... because God always provides... is the issue of WHAT.  What do we do?  How much?  I don't feel like we do near enough for him.  Richie and Maelynn have little kid issues, like fussing about this and that, fighting over a toy... and I can deal with all that.  But we feel the clock ticking for Ryan. It's hard not to look at him and be afraid we're not doing enough.  That he'd be okay if we'd just...

The only thing that makes anything okay is trust that, if God can keep planets from colliding, he's capable of giving us what we need, when we need it.  He gives us joy to hug and encourage and play, peace to sit and listen to him hit the walls and scream during therapy, and faith to rest in the knowledge that he sees our pain, our fear, and will always keep his promises.

That said, it's off to Baylor and Ms. B.  It's raining and cold, so the littles and I will read books and play with the bucket of bear counters, taking a little stereotypical childhood with us.

And whether it feels like it or not, it's going to be alright.

Thanks be to God for consistently being himself.  :-)

1 comment:

  1. "if God can keep planets from colliding, he's capable of giving us what we need, when we need it."

    so very, very true.

    i'm sorry for the hard times. i've been there. i know. a quote i've been holding on to this week:
    "Have we ever had the shadow of a reason to doubt our Father’s goodness? Have not His lovingkindnesses been marvellous? Has He once failed to justify our trust? Ah, no! our God has not left us at any time. We have had dark nights, but the star of love has shone forth amid the blackness; we have been in stern conflicts, but over our head He has held aloft the shield of our defence. We have gone through many trials, but never to our detriment, always to our advantage; and the conclusion from our past experience is, that He who has been with us in six troubles, will not forsake us in the seventh. What we have known of our faithful God, proves that He will keep us to the end."
    — Charles Spurgeon

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