Thursday, May 31, 2012

Just not FAIR

There are so many things that we as parents  help our kids fight through, but I think the one that gets me the most other than the obvious, is the "mine," followed closely by "it's not fair."  There are several forms of the fairness argument, not the least of which is the plea that one child had it first.  The one that kills me is "but it's MINE!"  I've been known to remind them that everything in this house that is theirs has been given to them... and that sharing is the best way to enjoy those things.

I've also been known to just take the offending article away.  There, not a problem!  And the tears over a toy, usually cried by one particular child, are often met with a reminder that toys aren't worth crying over. Just keep going and find something else to play with.  Or if someone wrongs you or upsets you, come talk to me about it.  But please, please, don't scream and hit and fight over a piece of plastic.

But there are times when it's just not fair.  This morning, in therapy, we had our parent meeting to meet the young lady who will likely take over Ryan's therapy next year.  The littles got to play in the BARC while we visited.  As usual, the kids had a great time.  Ryan showed off the cute side of his personality, stimming and humming and spouting off stimmy words and road signs.  Adorable!  The littles found the giant carton of Goldfish and dumped half of it.  Oh joy... note to self: buy Goldfish crackers for the BARC.  In between saying "no" and "stop that" and "be nice to each other" we talked about goals.  Trying new foods is still #1, and it's being closely followed by learning to get on an elevator without being held.  At 7 years old and sixty pounds, I'm thinking my back would appreciate eliminating that particular aversion.

When it was time to go, Ryan spotted the swing in the door.  Just a week ago, he realized it was there.  Ever since, he wants to swing for a reinforcer (reward, treat for those of you not all about ABA).  He asked to swing, we let him swing ten swings. Not enough. He melted down into a screaming, crying, shaking mess.  In trying to keep him from hurting himself, I managed to get in the way of his fists a couple of times... still better than him hurting himself to me.

It's just a swing.  We have a swing set at home.  Why in the world couldn't I convince him that it wasn't worth all this?  Why is he so attached to that?

We drive 45-50 minutes one way, twice a week for therapy, one hour at a time.  He gets a little speech at school, and we recently found a speech therapist to come to the house starting soon, we hope.  He gets a little occupational therapy at school, too.  We are blessed to have what we have, and we are thankful for the therapists and teachers we work with.  We try to learn how to do these things at home to bridge the gap.  But if you click here and read the whole thing, you'll see that between three and five hours of therapy a week isn't what is considered "intensive."  I read "sixty hours a week" and I felt sick.

I can't give that to Ryan.  If that's what he "needs" then we are so far behind it's nauseating.

Sure, if we had the money we could move somewhere that has more therapy available.  Sure, if there were more therapists out there I guess I could drive him to Waco more.  But there isn't the money for us to live in Austin or Dallas or the other metro areas around.  We have two other kids who are younger, one of whom caught one of the backswings during the meltdown this morning.

Yes, we're working with him.  Yes, he's improving.  No, it isn't enough.  Would it be enough if he was your child?

But what do we do?  It isn't fair.  Other kids get more therapy than he does.  Other kids live in areas accessible to more therapy than we do.  And you look at Richie and Maelynn.  They spend six hours a week on therapy for Ryan, because it takes about an hour from leaving, picking up, and dropping off to get him delivered.  I do my best to remember that we're not alone, but knowing others are suffering too just makes me wish I could fix it all the more!

Then I remember the people we met recently, and the little boy about Richie's age.

He was happy, sweet, and smiling once his meltdown ended.  I wondered why his dad stayed with him so much, but didn't think much of it, because we follow Ryan around an awful lot and he's seven.

Then, as I visited with his mom, I learned that on top of cancer, he lost both his eyes to pediatric glaucoma.  The doctors didn't catch it like Ryan's did.  They didn't listen to mom.  He lost his sight.

Eric and I think of glaucoma as kind of like a secondary or third diagnosis.  We almost forget he had it.  Had it not been for the common cold and a doctor... a general MD in the country, not a pediatrician... he would have gone blind.  Quickly.  Click here to read his story.  Honestly, it was a pediatrician who, the month before it was discovered, told me not to worry about the cloudiness.

So although we're not in an ideal situation, even though it appears that we're in an unfair situation, not being able to get the amount of therapies the experts say helps these kids the best, we trust that we are where God wants us.  I don't want to live a day out of the providence of God, who is good, and holds us every day and in every situation.

28 And we know that for those who love God all things work together for good,[h] for those who are called according to his purpose. 29 For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. 30 And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.  Romans 8:28-30

So we seek treatment, we seek therapies, we make decisions based on the education we have.  We do our best.  We learn what we can, we live our lives... really LIVE them, not just hand them over to the resignation of having to do things a certain way because of autism.  We seek to look through the surface and see the rich, deep joy that we could so easily pedal right past, because it is often shrouded in frustration and complications.  

We remember that we are truly blessed.  

Thanks be to God for it all.  

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