In The Wheelbarrow

I’ve wanted to move back to Montana for some time now.  There isn’t a particular reason why, other than the fact that I belong there.  I really can’t explain to you why I belong there.  I just do.  And I always have.

This doesn’t mean that I don't adore Arizona.  We’ve lived in Arizona for five years now, and even though it’s never really become “the place where I belong,” it’s still a place that I've grown to love beyond any kind of reason.  I must confess, however, that I haven't always loved Arizona.  I used to think that this had something to do with the state itself, but I’ve come to realize that it had more to do with finding out about and coming to terms with the Autism in our family instead.

I’m afraid that this tainted Arizona for me for awhile.  I can only compare it to experiencing the stomach flu right after eating a hamburger – that even though the hamburger had nothing what-so-ever to do with the flu, a hamburger may not sound very appealing again for awhile.  And I realize that this may not make sense anywhere but in my own mind:) 

I had a friend tell me once, a long time ago, that I would never be able to move back to Montana until I first truly fell in love with Arizona.  She said that only after it would be a tragic loss to leave here, would I then be able to go home.  And I thought that this sounded crazy.  But, as it turns out, she was right.  I'm so sad to be leaving here that I can hardly stand it, yet so incredibly happy at the same time.  It's very odd.

I sometimes wonder if God knew all along that I would need to keep my home town in Montana untainted in my mind – that I would need to have a place to dream about, to romanticize a bit, and to keep special, so that I would always know that there’s somewhere I belong.  This has been extremely important through the discovery of just how different, just how sharp-edged, and just how square pegged of a family I have in this smooth, round holed world. 

I haven’t dealt with the discovery of the Autism well.  I’ve pained and pined and oozed grief.  That’s a rather nice way of putting it actually.  I don’t just ooze grief.  My grief more closely resembles a tornado than a jelly donut.  I’ve done some damage to people around me here, who, for some reason, have kept on loving me anyway.  And it’s almost as if God knew all along that if I had been in my home town, with my family, through this time in our lives, that I might've damaged every lifelong relationship I had ever created there.  Then I truly would’ve been left with nowhere that I belong.
 

So God put me in the middle of the Arizona desert instead, a true environmental representation of my own spirit at the time, to carry out my little tantrum in a place where tornadoes quickly wear themselves down into harmless little dust devils, and eventually dissipate entirely under the heat of the desert sun.  I’ve experienced so much growth and so much healing here, and I’m forever in debt to some of the people in this beautiful state.  But I'd like to go home now.

Shane and the kids want to go too.  We have no family here in Arizona for six months out of twelve every year.  And, during the time our family isn't here (May through October) it’s too hot for the kids to play outside.  This is particularly painful during summer vacation.  It’s never made any sense to me why they’d have a three month long vacation from school in the middle of summer here, during which it’s hot enough outside to fry an egg on the pavement.  Most people spend time at the pools I think.  But since my youngest son Cale’s behavior more closely resembles that of a wild animal than that of a young child, I can’t safely take all of my children into public by myself.   And Shane works all day every day.

We don’t go to the pool.  We don’t go to the library.  We don’t go to the grocery store.  We don’t go to birthday parties.  We don’t go to the movies.  We don’t go anywhere at all.  Instead, we all sit in the house all summer long and drive each other absolutely crazy.  And by the time my in-laws get back down here (just before Halloween generally), my children are pretty desperate for love, attention, and entertainment, because they’re mother has been paying attention to nobody but the wild animal for six straight months.  Then, during the winter while my in-laws are here, we all really enjoy being here.  But come May, we have to repeat the process.

We went to Montana for six weeks last summer.  And instead of spending ten lone hours per day inside of the house on their DSI’s, Alden and Isabel played outside with the neighbor kids.  And they went to the pool, to the library, to the grocery store, to birthday parties, and to the movies, with various family members and friends.  I was still stuck at home with Cale for the most part, but Alden and Isabel weren’t.  And, if we lived in Montana year round, the kids would be in school during the winter time, where they really should be while the weather outside is crappy.

Last summer (and especially after the kids cried all the back to Arizona), we began to seriously consider moving back home.  Things didn’t fall into place though, which was disappointing.  But we quickly recovered and grew happy with idea of staying here again.  Then, about three weeks ago, things suddenly fell into place.

I just saw a little sign on someone’s face book wall that said:  God either says “yes” and gives you something good, or he says “no” and gives you something better, or he says “wait” and gives you the best.  I guess that we just had to wait awhile.

You’d think, by this point, that I would trust that going home is what’s best for us, wouldn’t you?  And I do think it’s what’s best for Shane and me and Alden and Isabel.  But I’ve just been informed that in order to apply for state services for Cale there in Montana, I have to completely close out our DDD account here in Arizona.  I was originally told by my DDD caseworker that Arizona would cover Cale (his medication anyway, which is $700. per month if paid for out of pocket) until he receives Medicaid there in Montana.  But now she’s retracted that statement, and has told me that we’ll have to close out here entirely and then reapply there in Montana.  The problem with this is that there are waiting lists in Montana.  And long ones.

We’re willing to wait for therapies for Cale, but this medication is what keeps him from stimming all day every day.  It’s what makes him want to interact with me rather than spend all of his time away from me in his own little world.  Our insurance company doesn’t cover anything for Autism though, so, like I said, we’ll have to pay the $700. per month out of pocket for Cale’s medication while he’s on the waiting lists in Montana.  And I’m really not sure how we’re going to do that.

Do you remember that old movie Sophie’s Choice?  Where she had to choose which one of her children would live and which one would die?  At the risk of sounding ridiculously dramatic here, that’s kind of what I’ve been feeling like.  I can’t yet see the other side of the “applying for Medicaid in Montana” mountain.  I really don’t know what moving back is going to mean for Cale.  All I can see right now is that in order for the rest of my family to be happy, Cale has to lose everything he’s got here in Arizona.

Cale has become consistently violent (well… as violent as a five year old can get anyway).  It doesn’t hurt me that much when he hits me in the face (unless he happens to get my eye, which he does here and there and that hurts like hell).  However, when he hits and/or pushes my other two children, or other people’s children, it’s a different situation.

Cale is still non-verbal and is incredibly reinforced by negative attention.  To say, “NO, NO, NO CALE!!!  WE DON’T HIT OR PUSH PEOPLE!!!” is the same, if not better, than giving him a sucker for hitting or pushing someone.  No really.  Because he doesn’t comprehend much verbal or non-verbal language, and possibly because he doesn't experience the sensation of pain correctly, he doesn’t seem able to differentiate between an extreme positive emotional reaction and an extreme negative one.  Any extreme emotional reaction is a sucker to him.

At first I thought, “No big deal.  Some kid at school will eventually kick his little butt for hitting or pushing, and then he’ll knock it off.”  Well, he did push a kid at school, and that kid broke his nose for it (okay, fractured his nose – I’m so dramatic).  His violence didn’t stop.  In fact, it doubled.  And the next week, when he pushed a kid at school and got his lip split open for it, it tripled.

The solution, of course, is to intervene before Cale hits/pushes somebody, but the problem is that you can't always see it coming.  He isn't at all angry when he goes after another kid.  Instead he smiles and giggles and bounces around, like he's going to try to play with them.  Then, out of nowhere, he hits them in the face, or pushes them onto their butt.

The appropriate “behavioral approach” response to this, just in case you’re wondering, is to intervene before the other child retaliates, and to turn your back on Cale while giving the other child the extreme emotional reaction instead (OH MY GOD!!!  YOU POOR CHILD, YOU GOT HIT/PUSHED!!!  ARE YOU OKAY?!!!  OH MY GOODNESS!!!  ARE YOU ALRIGHT?!!!).  If necessary, remove the other child while still completely ignoring Cale.  It works (theoretically) when the function of the violent behavior is to get a reaction.  They just haven’t quite figured out how to implement this solution at his school yet (picture me rolling my eyes).

This is the solution I’ve been using with Cale around my other two children, and it's worked with them.  But we still can’t risk allowing Cale around children who aren’t ours because, quite literally, the first thing he does is try to hurt them.  He even hit my friend’s baby with Down Syndrome at my house the other day (I didn’t see it coming – I really didn’t think he’d try to hurt a little baby), right after knocking down her three year old.  At a time like this, teaching Cale a lesson becomes a secondary concern.  Keeping everyone safe becomes the primary one.  We locked him in his bedroom until my friend took her kids and went home.

This is how Cale is ON his medication – without the medication his behavior is much faster and much worse.  But what if we can’t afford $700. per month for a medication?  What if moving back to Montana isn’t what’s best for Cale?  What if he took out an eye?  Or pushed someone down the stairs? 

Worse yet, what if his brain NEVER catches up with his physical abilities?  What if the aggression keeps getting worse and worse and worse, and he keeps getting bigger and bigger and bigger? What if there comes a day when my son gets so big that I can no longer physically control him, yet the state and/or the insurance company still won't help me? What if, in the future, he really hurts somebody?  Would he be taken from me?  Would my other children be taken from me?  Would I go to jail?  I do sometimes have to wonder what would happen if I called up the state and said that I refuse to be responsible for my son's behavior for as long as they refuse to help me. 

Wow.  Do you see what I mean about my being a tornado?  

These are the kinds of questions that torture me when I’m sitting in a puddle of my own self-centered fear.  The “what if’s?!!” are always my clearest little indicators that I’m in that puddle.  I have a lot of self-centered fear sometimes, but the gorgeous thing is that I have a choice today as to how long I want to sit there for.  I don’t like being in that puddle.  It’s water makes my skin want to escape from off my body.

Of course, I always hear what I need to hear at the moment I need to hear it.  Last weekend, I talked to a man who talked about the difference between having faith in God and trusting God.  He used the analogy of God being a circus performer, and said something along the lines of this, “When I see a circus performer walking across a tight rope pushing a wheelbarrow, high up in the air, I believe that the circus performer has probably done this hundreds of times before, and I know that he knows what he’s doing.  I have faith that he’s going to make it across.  However, if I truly trusted the circus performer, I’d sit in the wheelbarrow.  That is conscious contact.  It’s more than faith.”

He was talking to me.  He was talking to me about going home.  And he was talking to me about everything else that may or may not ever happen in this silly little life of mine.  Unfortunately, and fortunately, I have the kind of life that requires conscious contact.

The thing that’s kind of funny is that here I sit, actually thinking that we could be making the wrong choice even after everything has fallen into place.  Here I sit, actually thinking that there could be a wrong choice.  And here I am, trying to foresee what moving might mean for Cale when, in reality, it's none of my business.  I mean, who do I think I am anyway?  Some kind of fortune teller?  Or God himself?  Do I really think that I control the outcome of everything?  I don't know what's going to happen, and I don't have to.  I'm not the one in control of the wheelbarrow.  All I have to do is make my decisions based on trusting God, not based on self-centered fear.  All I have to do is sit in it.  

If I really believe that God wants me to be happy, joyous, and free, then what that means it is that whatever happens next (no matter what it may look like to me at the time, and even though it may be painful on occasion - maybe there's a bigger picture that I just can't see yet, or maybe there's something that needs to be learned from it, I don't know) is what is best.  It's not just what's supposed to be happening, it’s actually what is best.  If Cale wasn't supposed to be moving to Montana, then things simply wouldn't have worked out for us to do so.  

Belonging somewhere is a choice I think, by the way, not some sort of gut feeling.  And if everything works out we should be home before Christmas (unless, of course, God has other plans:).  And I have a feeling that my romantic idea of the little white, Montana Christmas is actually going to look more along the lines of, “HOLY FUCK it’s FREEZING here!!  Do you remember it being this COLD here?!  ME NEITHER!!!”

We’ll see how spiritual I am then.  Who knows.  Maybe I'll belong in Arizona soon:)   Happy Thanksgiving by the way.  Travel safely.