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.

Seeing

One of the really tragic things about leaving a house is that it's such a permanent good bye. I'm one of those people who, years after moving out, finds myself wanting to visit my old houses just to see how they're doing. But I never actually have the guts to knock on the door and ask perfect strangers for an unscheduled tour of their home. So I drive by occasionally instead.  And I wonder.

We're currently waiting for the bank to tell us when we have to move out of our house so that the new owners can move in. And I'm still not sure where we're going to go. There's a house for rent around the corner. And it's okay. The kids would be able to stay in the same schools. I just keep reminding myself that there are much worse things. Having a kid who can't talk, for example. Something like that leaves losing a house in the same category as small beans. But still, we've put a lot of work into this house. So I have felt rather sad about it at times.

Things always come to me just when I need them to. Lately, I've been reading about the arts of gratitude, seeing, and blessing. Don't throw up, it's not as cheezy as it sounds. Well, actually it is. But I guess I don't care. Gratitude is about, well... feeling grateful. And feeling it as intensely as possible as often as possible. Seeing has to do with seeing the truth, not necessarily the truth one wants to see, the one that's been manufactured by, lessened by, or added to by the ego, but the real truth in a situation. And blessing has to do with recognizing and rejoicing in the interconnectedness of everything, and behaving accordingly.

I do a lot of reading about these kinds of things. But, while I love to read about it, I don't so much love trying to practice it. Practicing it takes quite a bit more effort I've discovered. But practicing these things on a daily basis apparently opens up portals - ones that link one's heart straight to God, or, if you prefer, to the highest energy frequencies of the universe. Still sound a bit too fluffy? Okay. Let me put it this way. It claims to be the magic formula for how to get what you want. Now that I can hear:)

Last Friday, the people who are buying our house had their realtor call me and ask if they could come over and take some measurements of the windows. And this irritated the hell out of me. I immediately thought, "You know?! If we could pay the price that they're paying for MY house, then we could afford to keep it! But that's not enough, they have to inconvenience me too?!"

This one little thought set forth a train of negative thinking that lasted the entire morning. "They're probably typical tract house people. They'll probably try to make everything look brand new. They'll probably rip out my painted kitchen cupboards and put in those cheap looking, maple ones from Lowes. They probably won't appreciate my appliances at all. And they'll probably paint my walls, the ones I've spent hours and hours painting soft, warm colors, white. White, white, white. White walls and tan carpeting. Oh God! That's surely what's going to be in any rental we move into!"

It kept going.

"And clutter. They'll probably fill my house with fat, over sized furniture and millions of tiny nick knacks. Tiny porcelain puppy dogs. Creepy little children figurines with big heads and unnatural eyes. Fake flowers. Oh God. And they probably have a T.V. the size of my bed.  They probably don't own one book! Oh, this poor house. This has got to be a mistake. Is this is a mistake?! Maybe there's a way to hang on to the house that we just haven't thought of yet."

At about this point, I recognized that my thoughts were not only completely out of control, but that they were also really affecting my emotions. I felt really shitty. And my body had become stiff as well. I realized that if these people came over and found me in this state of mind, their time here would consist of uncomfortably taking the measurements with an unfriendly, cold and aloof person in the next room. We wouldn't be able to break the tension with a jack hammer. And how would I feel if I was buying a home, something that can be one of the most joyous occasions in life, and it was starting out cold and tense? It would make me very sad. That's when I decided to try out my new, rather fluffy information.

I sat down in a chair and started a meditation. I started with trying to bring about a feeling of gratitude for these people. It didn't work. So, I decided to start with something simple instead. Coffee. I mean, how can one not feel an immediate and overwhelming sense of gratitude for the existence of coffee? Then I slowly began to transfer this feeling to other things. Cheesecake. The fact that we always seem to have food.  Really good food. Paris. Art. The people who make art. People in general. My husband. My kids. Friends. Strangers. And, finally, the people buying our house.

The gratitude made the seeing (the finding the truth) much easier than it would have otherwise been. These people haven't done anything wrong. Their buying our house isn't a personal affront to me. In fact, they're doing us a favor by buying our house. It's because of them that we don't have to actually foreclose. And all they're thinking about is the excitement of buying a new house. What can I do to try and make it a positive experience for them? Well, I can try to bless the occasion (and I actually didn't vomit upon thinking this). I can be happy and friendly when they come.

I felt so good that I was practically buzzing right off the chair when the doorbell rang. It was a woman, her husband, the woman's mother, and their realtor. The woman immediately pushed her way through everybody and over to me, got within about six inches of my face, and the first words out of her mouth to me were, "I LOOOVVE your house. I love everything about it. I love your colors.  I love your stuff. I love your taste. I love everything."

"Thank you!" I said, absolutely delighted.

Then she got within about four inches of my face and asked quietly but forcefully, "Can I have your curtains?"

I put my face even closer to hers and said, "Umm… NO."

"Damn it!" she responded, smiling big. "Well, he hasn't seen the house yet," she said, pointing at her husband, who was still in the process of rolling his eyes about the curtain question, "I put in the offer without him."

"Oh God," I said, smiling at him, "Well you better go and have a look then."

Shane was working from home that day, so he came downstairs and met them as well.  And the four of us hit it off unbelievably well. Have you ever met people that you not only like, but that you immediately know that you could be friends with? That' what happened.  We spent over an hour talking and laughing and getting to know each other.

We talked about every detail of the house.  I spent some time showing the husband how the appliances work, which he loved because he cooks for real.  Then we went out into the back yard and showed them the trees we’ve planted and the garden, which currently has so many ripe watermelons that I don’t know what to do with them all.  They loved it.

When we got back inside, she said to me, “You know?  I absolutely love these kitchen cupboards.  Is there touch up paint for them?” she asked.

“In the garage and labeled,” I answered.

“And the colors on the walls are so beautiful.  I won’t have to touch a thing,” she said.

I could’ve kissed her.

When we got into the office, she said, “I told him (pointing to her husband again) that none of our T.V.s will fit into that little slot in the family room.  I told him that a woman with this many books probably has a tiny T.V., and sure enough you do.  Do you want to sell any of these bookshelves?”

“If I did that, were would I put the books?” I answered.

“Good point.  He works in the entertainment business, so we have a lot of really huge T.V.s,” she said.

Oh well.  Nobody’s completely perfect.

“But I have a lot of books as well,” she continued.

At this point, I noticed that her mother had been staring at Cale for a long time.  Every time I had looked at her she had been staring at Cale.  Cale has reached the age where he no longer looks like a toddler.  He looks like a kid.  But he doesn’t talk and he doesn’t act like most kids.  He still kind of acts like a baby.  And I have immediate affection for anyone who notices and becomes concerned.  I could tell that she didn’t how to bring it up.

“He has Autism.  And he doesn’t talk,” I told her, “But he goes potty in the toilet now!”

Cale was dancing around in front of the bathroom door.  “Excuse me,” I said, and took Cale to the bathroom.

Then we all went upstairs and visited up there for a long time, slowly going through each bedroom while they made decisions about where to put their furniture.  Then we went out onto the balcony off of our bedroom, and once the men had gone back inside again, the wife asked quietly, “Are you disappointed that you have to move?”

“Yes, but only because we’ve done so much to the house.  If we can move to Montana, which is where all of our family is at, then I won’t be disappointed.  But if we end up in a rental around the corner, then I’m afraid I will be a little.  But I’m so happy that you guys like everything so well.  That helps a lot,” I answered.

We had a good heart to heart talk about a few things.  Then, once she had gone back inside leaving me with her mother, her mother got up close to me and said, “No words at all, huh?  Is he getting any help?”

Bless her sweet heart.  All she was thinking about was my son.  I explained how Cale can imitate a few words now, but that it’s like the wire in his brain regarding initiating communication seems to be disconnected entirely.  So he doesn’t say anything unless you prompt him.  Then he will only sometimes repeat the word that you say.  I also told her about all the help he’s getting.  “His therapists and I have pretty much given up on any kind of functional verbal communication.  Now we’re moving toward teaching him how to communicate using a picture system, which can later be transferred to using a computerized communication device,” I explained.

And I realized, as I was explaining all of this to her, how deeply concerned and pained she was by this information.  She almost looked as though she might start crying.  And, at the exact same time, I realized how deeply concerned and pained that I was not.  I mean, I knew that I had working on acceptance for a long time.  I’ve wanted, for a very long time, more than anything else in the entire world, to be able to accept my son for who and how he is, for whatever that means.  And it was a silent, unexpected gift to discover that this had finally actually happened.  I was really okay with him not learning to talk.  I explained all of this with a smile on my face, and actually even gave her sympathy for her pain about it.

“Wow,” I thought, “Gratitude, seeing, and blessing things, really does bring you what you want.  If I had been cold and aloof, none of the nature of this visit would’ve happened.  And I wouldn’t have realized that my dream, my real dream, had finally come true.”

We all talked for a long time sitting in our living room.  I found out that the mother is an art teacher.  That’s what I was.  And her daughter, the woman buying the house, has a master’s degree in education too.  We all had a lot of things in common actually.  They bought some furniture from me, which is great because I can just leave it in the house when we move.  And we exchanged phone numbers, all while their realtor plugged his ears and hummed so as to ignore all of the official real-estate rules that we were breaking during our interactions.

You know what’s funny?  They never did take measurements of the windows.  It was all just a ploy to get into the house and meet us (although it might’ve initially been a ploy to get a hold of my curtains:).  And as we were saying good-bye, the woman buying the house looked at me and said, “You’ll have to come over.  Come anytime you want to see the house again, even if it’s years down the road.  We’d love to see you.  You might be kind of surprised by how it looks though.  I collect a lot of nick knacks.  I have a collection of crosses that will cover that entire wall right there.”

Crosses.  Good Lord.  I’d have never even thought of that.  Oh well.  Like I said before, nobody’s completely perfect:)        



   

 Good bye house.

Fly

"Faith is the human component of that mysterious interweaving of divine grace and human intention that can vanquish the power of attachment."

Gerald May

 I used to have flying dreams all the time.  You know the ones?  Where you're running as fast as you can down the middle of a street because you're being chased, and you just... sort of... take off - arms stretched out wide, wind blowing through your hair, you suddenly realize you're actually gliding above the road?

That's always when I realize that I'm dreaming, mainly because I know I'm not a bird.  But also, I'm afraid of heights.  I always have been.  It’s not so much the being up high that bothers me, it’s the seeing the ground from up high that I can’t stand.  And the higher up I am, the worse it is.

I’m wary of looking over the edges of rooftops, balconies, or even the high dive at the local swimming pool.  I can’t stand looking over the edges of tall cliffs, or looking out the windows of high rises, or riding on elevators made of glass that go up more than about two stories.  I don't even particularly like flying in airplanes and, while I'm doing so, have to make a conscious effort not to think about the fact that I'm in giant tin can high up in the sky.  I wouldn't get onto a helicopter or a hot air balloon if you paid me a million dollars to do so, and I probably wouldn’t get onto one of those really tall roller coasters to save my own life.  But as soon as I realize that I'm dreaming, that it isn’t real, I’m able to go with it.  I let myself get a little higher and a little higher and a little higher still, and before long I'm gliding, face down, over housetops and treetops and rivers and hills.  It's fantastic.

I had a Northern Cheyenne medicine man tell me once that when you fly in a dream it means that you're truly free.  But the last time I'd had a flying dream was when we lived in Montana five years ago.  I’ve missed those silly dreams. 

Cale turned five last Thursday.  He didn't get selected for Montana's Early Intervention Program.  And, as far as I can tell, he's now officially too old for any of the state funded early intervention programs that include 20+ hours of ABA therapy per week, because the states reserve their limited high intensity resources for the children with Autism whom they think have the most chance of learning how to talk - children who are under the age of five years old (under the age of three in Arizona).

The cut off age for early intervention, in all the states we’ve researched so far (with the exception of Arizona – Arizona is behind the times on this), is five years old.  So, unless I’ve missed something (and I must confess that I haven’t researched all fifty states yet), it’s too late for Cale to get early intervention now that he’s five.  Geez, have I made my point?  Let me say it again, just to be sure.  It’s too late for Cale to get early intention.  It’s too late.  I think I need to get it through my own head more than I need to get it through yours.

Cale's fifth birthday, for this whole past year, has felt like some sort of giant dead end – a big, concrete wall for me to slam into.  Now, maybe that seems silly to you.  I’ve had a number of people say to me, “Now, now.  Just because Cale doesn’t talk by the age of five doesn’t mean that he never will.”

“How do you know?” I ask.

“Because there are always cases in which a child with Autism spontaneously starts talking perfectly one day out of absolutely nowhere,” is the response I usually get.

And I sigh, because I tire of people who have no experience living with low functioning autism (for lack of a better thing to call it), who heard once that a friend's aunt's new husband's little sister's boyfriend had a cousin with an Autistic son who spontaneously starting talking at the age of eleven, telling me with all the ignorant hope they can muster that there's still a chance for Cale. 

I usually respond by telling them that my nephew with Autism (actually he’s Shane’s mom’s nephew), who’s in his twenties now, has never said a word in his life, and that there are more of these than there are people who spontaneously start talking one day.

It's a bitchy response, I know.  But what about the children who talk due to years of repetitious labor on the part of their parents?  And what about the children who never talk, in spite of years of repetitious labor on the part of their parents?  I suppose there are times when the problem just magically fixes itself, but that’s not the norm and I’m certainly not going to hold my breath waiting for that to happen for Cale.  The fact is that you just never know.  And toying ignorantly with a parent’s hope is unkind, no matter the intention.

The reality is that my son is never going to talk the way that you and I do.  He may not even learn how to tell me his most basic wants and needs.  And I’ve wanted so badly for him to learn how to talk.  And I mean talk.  I don’t mean recite lines out of Dora the Explorer (not that he’s even anywhere near that).  I don’t mean imitate.  I mean really, spontaneously, verbally communicate.  "There's a window of opportunity for teaching him that," they say, one that apparently, according to the state early intervention programs anyway, closes by the age of five.

The unfortunate thing about the rather popular “window of opportunity” theory is that it leaves a parent feeling like they've failed somehow, when I think it’s more probable that the child was never going to talk anyway.  That’s just my opinion of course, but I’ve done all the same things with my two kids with Autism that my sister-in-law has done with her two kids with Autism.  And my daughter Isabel, along with both of my sister-in-law’s boys, all spoke pretty functionally by the age of five.  But Cale, who’s had all the same damn interventions (and more actually), still hasn’t learned. 

Maybe it is my fault.  I guess I’ll never know.  But even if it is, what am I going to do about it?  Beat myself up for the rest of my life?  God picked the wrong woman if that was the goal.  No, what I’ve wanted to do, actually, is to just set my attachment to Cale talking, my hope, my desperation, my indescribable longing to hear words come out of his mouth, which has become toxic to my insides like a rotten, maggot infested, old piece of meat, down onto the ground and walk away from it.  It’s become something that’s my problem, not Cale’s. 

Cale is clearly just being who he is.  And I’m his mother.  I should be able to accept him for who he is.  I should have the attitude of, “If he talks then great, but if he doesn’t then that’s okay too.”  I need to develop this attitude, in fact, for my own sanity.  I just haven’t known how.  I’ve never been particularly gifted at letting go of things going my way.  And this has been a big one.  It’s had my claws dug deep down into it for a very long time - my will hanging off of it like a kitten that won't be pulled from a shirt.

Shane and I were sitting on our bed the night before Cale's birthday, talking about acceptance.  And I asked him how he could accept it – the possibility of Cale never talking – because Shane has genuine peace in his heart about this.  "How is one supposed to accept it?  Really?  How can you accept it?  I don't know how," I said to him, tearing up and looking down at my hands, "How can I accept it?" 

He looked at me in the most loving way and said, "Sweetie.  If Cale needs to change in order for you to be okay, then you're in very big trouble.  Because he may or may not change."

And you know?  He's right about that.  Now, I'm not saying that we plan to stop Cale's therapies or quit trying.  I'm not even really saying that we're giving up hope for him.  We’ll always hope that Cale will learn to talk.  We just need to be okay if he doesn’t.  I’ll keep doing the footwork, but I have to let go of my expectations.  It's been an excruciating extraction (because I really liked my expectations), the final yank of which finally happened on his birthday. 

Thursday morning, I opened Cale's bedroom door and he flew into my arms (our morning ritual).  I hugged him and kissed him and changed his diaper.  Then he ran downstairs and into the kitchen and grabbed his juice cup, thrust it into my hand, and looked up at me.  I said, "Happy birthday sweet boy.  You're five today, you know that?"

He looked at the cup in my hand, so I prompted, "Juice?"

He looked at me, then looked at the cup, then looked at me again.  "JUICE!" I prompted again.

He looked at me.

"Say JUICE," I said, "J UUUI CE."

He just kept looking at me.

"You have no idea it's your birthday, do you?" I finally asked him.  And he didn't.

Something horrible and heavy was yanked out of my chest at that moment.  It hurt so bad that it exhausted me instantly, and I wanted more than anything in the world to go back to bed and not get back up.  But here’s how God works in my life.  I couldn't go back to bed because about fifty of my closest friends had bought me a plane ticket to fly to Montana that day, and I still had to get ready to go.

I didn't have time to think.  I kissed Cale good-bye and put him on the school bus.  Then I finished packing my clothes, drove to the airport, and got on a plane to fly to my friends.  I spent three days in the mountains with them, all fifty of them women.  I forget sometimes how many women I know in Montana, how many women I love and who love me.  I don’t mean to brag, but who could help it?

I didn't used to have women friends.  No, really.  I hung out with a sum total of three girls the entire time I was growing up.  I was friends with boys mostly - nice boys, but boys none-the-less. And I was pretty happy with that until my closest friends grew up, found their significant others, and cut me off like some unwanted skin growth.  That’s when I wished that I had made more girlfriends :).   

Fortunately, over the years since then, I have been lucky enough to discover, cultivate lasting friendships with, and be absolutely blown away by the love of all of these beautiful women.  They brought a birthday cake into the mountains for me (my birthday was Saturday), sung to me, and spoiled me rotten all weekend long.  I ate chocolate under the stars, cried, and laughed so hard I almost peed in my pants.  I was simply swished up, carried over the top of that giant dead end, that big, concrete wall, and set gently back down on the other side of it.  Oh, thank you friends.

On Friday night we built a fire and did a little make-shift ceremony of sorts.  Each of us was supposed to write down, on a little piece of paper, something we were trying to let go of.  Then we were to throw it into the fire in exchange for a fresh cut, white rose.  It was a gorgeous idea, but I couldn't think of what to write down.

I thought, for a moment, that I should write down Cale talking.  But then I thought that maybe I should write down our house (which we're losing) and Shane's job (the round of lay-offs began today - so far so good for Shane though, we'll see what happens tomorrow).  Then I thought maybe I should write down moving back to Montana (something I've really, really, really wanted to do, but haven't gotten to).  Soon I was flustered.  I had too much to write down, so I stopped to think about it for awhile. 

"What's the common denominator throughout all of these things?" I asked myself, “What’s the common denominator that runs through everything in my life that ever brings me misery?”  And that's when it finally hit me.  It's My Will – it’s the need for things to go the way I think they should.       

So I put My Will into the fire and left it in Montana.

The following Monday, when I was back in Arizona doing therapy with Cale, I noticed a difference in how I was interacting with him.  I couldn’t muster up an ounce of care as to whether or not he said the words we were trying to get him to imitate.  As a result, there was no power struggle between us at all.  We just had fun together.

I realized that I was taking the exact same actions as usual, but with a completely different motive.  Instead of my actions being motivated by fear (you need to say these words or you’re going to end up in an institution some day!!), my actions were motivated by faith - the faith that we’re all okay, not that we're going to be okay someday, but that we're all okay right here, right now, right in this very minute, no matter what happens or doesn’t happen.  I just loved on him.  And afterward, the therapist (who's new) told me what an incredible job I did with him (which is new too).  It was the most effective therapy session we’d had in a long time.

After Cale got on the school bus, I had a couple hours before I had to pick up my other kids from school.  I was still exhausted from such a magnificent weekend, so I decided to take a little a nap.  And I, you guessed it, had the first flying dream I’d had in five years.

It wasn’t like my old flying dreams in which I slowly let myself get a little higher and a little higher.  Instead, I ran as fast as I could and dove, head first, off the edge of a very tall cliff (I can’t even begin to imagine why).  I fell for just a moment, and then began to soar, high and fast, over the tops of all these bright green pine trees.  I came to the edge of the forest and burst out over the top of this huge lake, where I could smell the water and the feel mist on my face as I flew.

I knew where I was.  I knew what was happening.  And I knew exactly what it meant.  Just then, I woke to the sound of the little alarm on my cell phone.  I got up and got into my now thirty-seven-year-old-mom mini-van, drove through our tree-less, tract house neighborhood, through the stupid, never ending, Arizona heat, and picked my kids up from their gray, windowless, big box school.  And I did it with a very big smile on my face.   


 

"Demon of Pride"

“The world always makes sure that you cannot fool yourself for long about who you really think you are by showing you what truly matters to you.”                   

 -Eckhart Tolle

My head has been spinning a bit this week.  A couple of things happened last weekend that I missed, the first of which was that our best friends moved away from our home town in Montana and I wasn't there to hug them way too hard for way too long, sobbing uncontrollably and begging them to stay.  I wasn't there to help load the truck or chase it down the street when they took off.  Why I had the urge to do these things is a bit beyond me, especially since I don’t live there anyway.  What difference does it make to me where they live?  I think I just wish I could’ve helped, wish I could’ve taken the opportunity to show them my love in a way that they could see with their eyes.

 

The other thing that happened was that my old church camp had a reunion, and I wasn't there to… well… re-unite.  Instead I was at my house in Arizona, trying to decide whether or not to remove the ceiling fans and face-plate covers from the electrical outlets before listing it on Monday.

 

I decided to keep the face-plate covers, and as I was unscrewing the stupid little things from the walls and replacing them with the old, white plastic ones, I thought about everything I was in the process of missing.  And it brought to mind an activity we did at that camp one year when I was maybe fourteen or fifteen years old.  The camp staff put together a treasure hunt, of sorts, for us campers.  We had to go through a series of obstacles, and if we made it through all of them then we got to go to heaven.  I know.  But try to set aside any specific religious ideas and humor me for a moment if you can.

One of the obstacles in the course involved getting past the “Demon of Pride.”  It was really just a camp counselor dressed in black with some sort of ski mask over his or her face.  Each camper was given an item.  It was something silly… like a bible maybe.  Or a mitten.  Hell, I can’t remember.  And the idea was for us to give our items up to the demon.  We weren’t told what we were supposed to do however.  We were supposed to just know.

Now, I must say that spiritual principles have never come quickly to me.  In fact, to this very day I have to sit with a spiritual principle for some time before it starts to sink in.  This one sort of makes sense to me now – that you can’t fight pride with pride, because if you do then pride wins anyway.  It also has something to do with detaching from things I think (people, places, things, situations, specific outcomes, old ideas that don’t work anymore, etc.).  But, at the time, I just didn’t think very abstractly.  And it just made no sense to me what-so-ever why anyone would give anything to a demon.

He/she jumped out of a bush, growling loudly and grabbing for our items.  It was so dramatic that I really had to focus in order to keep from rolling my eyes.  The kids I was with handed their items right over to the demon.  That baffled me, and I really wasn’t sure what I should do.  Long story short, I ended up in a wrestling match with the “Demon of Pride.”  And as I walked away from it, still carrying my item, he/she yelled to me from behind, “But you were supposed to give it to me!”

I wasn’t allowed into the next obstacle with my item, so I had to go all the way back to the bush and find the demon.  There was no growling or grabbing that time, just a disgusted set of eyes encircled in black ski mask, and an outreached hand.  I gave my item to the demon with a red face.  And shockingly, I still managed to leave camp that year having no more idea of how to let go of things than when I got there.

Someone is going to buy our house, along with everything we've put into it - granite, built in Bosch appliances (you can stick a whole chicken into a Bosch dishwasher, by the way, and it will magically disappear – just sayin'), and cherry wood floors, for almost $60K less than we bought the house for three years ago.  And we’re among the lucky ones around here I’m afraid.

And we’ve found out why Shane’s company said “no” to Shane doing his job virtually.  They’re re-organizing the whole team Shane works on, which means that everyone on the team is in danger of being “displaced” (which is a nice word for “laid off”).  Now, they’ve assured Shane that he’s a valuable asset to the company (he’s also an MBA hire which is a hefty investment on their part), so the picture probably isn’t as grim as I think.  But still, change is definitely in the air. 

Shane has been applying like crazy for roles on other teams within the company (some virtual and some not) in part because of the re-org., but also because we’re still waiting to hear whether or not Cale will be selected for Montana’s early invention program.  If Cale is selected, then we’ll drop everything and move to Montana (job or no job).  And if he's not selected, then I'm not sure what we'll do.  I suppose it'll depend on whether or not Shane gets stuck working here in Hell, oh... I mean Phoenix.  In a nut shell, every possible thing in our lives is up in the air, and all we can do is wait and see where everything lands. 

 

It’s kind of strange actually.  After all the work we’ve put into our house, I thought I’d feel some sort of sick, heavy sadness about letting it go.  But instead I’ve felt the exact opposite.  I’ve felt relief, almost like I’ve been digging my way out of a tunnel with a teaspoon and I can finally see daylight.  And we don’t mind letting go of Shane’s job if that’s what happens.  We’re creative, resourceful people who can probably get through whatever comes.  Alden and Isabel would probably do fine in any school in any city. 

 

The only thing I really care about is whether or not Cale gets selected for Montana's Early Intervention program, because I still think it might be his last best chance of learning how to talk.  They’ve already had one drawing in which Cale wasn’t selected, but there’s one more drawing before his birthday (which is the deadline for selection) so I still have hope. 

You wouldn't believe what I've gone through to get Cale ABA therapy here in Arizona.  Because we don't have insurance that covers anything for Autism, I've had to rely solely on state help.  Arizona only provides Cale with two and a half hours of ABA therapy per week, and it’s actually ABA parent training, not direct ABA therapy.  The therapist comes to teach me how to do ABA therapy with Cale, not to work with Cale directly.

  

Doing the therapy with Cale myself has been great for teaching him basic daily life skills.  But for something as extensive as teaching him how to talk, I simply don’t know how to put in the needed hours.  Not without neglecting my other two children anyway.  Plus, I don't really know what I'm doing.  When it's me trying to do it with him alone, it just turns into a big power struggle and makes us both miserable.  It's excruciating to be in the position of having to decide whether to do therapy with Cale or to be there for my other kids, especially because Cale screams and cries and fights me the whole time I try to do the therapy with him. 

Every day for the whole past year I’ve had to make decisions like - should help the kids with their homework and make dinner, or should I make Cale scream for another hour?  Should I clean this massive, disgusting house for four hours or should I make Cale scream for four hours?  Should I take Alden and Isabel to the birthday party, or should I make Cale scream?  Because if I don't make Cale scream, he might end up in an institution some day. 

It takes the whole "bad mother" thing to a whole new level.  I'm a bad mother because I don't take Alden and Isabel to the birthday parties and, at the exact same time, I'm a bad mother because I can't get Cale to talk.  And when I decide that I simply don’t want to make Cale scream, I’m a bad mother for not trying.

Not only is this what we've been doing for the past year, but it hasn't brought anything but the slightest of results.  And it's extremely difficult to not resent your child when everyone else has been neglected so that he could have his needs met, when he’s fought it tooth and nail every step of the way, and when he still hasn’t made any progress.

The state of Arizona gives us these two and a half hours of ABA parent training per week, and will for an extra year past the age when they would ordinarily stop, because I'm the biggest, whiniest, loudest mouth around.  I’ve learned how to be a very persistent pest.  But they've repeatedly assured me that this is absolutely the most we’ll ever be able to get for him here.  In Montana, if he gets selected for the Early Intervention Program, he will get 20+ hours of one on one ABA therapy per week, direct from a master's level therapist that isn’t me.  Oh, I hope he gets picked.

Cale is going to be five years old next month.  And if he passes the age of five without talking, then his chances go down.  It's not that he wouldn't sort of learn how over time (maybe), but the chances of any real, significant, steady progress goes way down.  My sister in law (Shane's sister), who has two children with Autism as well, told me that both of her kids were talking by age five. 

And at a party a couple of weeks ago,  I had a two year old hand me a sucker and say, "Can you opin dis pwease?" which caught me off guard and snapped my heart in half.  How do you explain to a two year why opening a sucker makes you cry, while your own son, who's a full head taller, walks around in little circles and screams at his suckers?  

 

Maybe it's God's plan for Cale to not talk.  And maybe, when I finally get to heaven and get my hands around God's neck, he'll explain to me why I had to give this one up to his silly demon.  He/she can have the location of my friends, our houses, income, cars, whatever.  But Cale talking?  That one just seems too important to give up.  Or, maybe, it’s too important to not give up.  That’s the thing that keeps coming to me over and over and over again - that I need to hand over my attachment to whether or not Cale talks.  It’s a terrible attachment.  And being free of it might just be heavenly.

The heaven at camp was a shady spot under the pine trees at the edge of a hill.  It had a perfect view of the lake.  We ate grapes and fresh Flathead cherries, and we got to be with our friends, simply because we gave something to a counselor in a ski mask (amongst other things).  Oh, wouldn’t it be nice if it worked that way today? 

I guess that heaven for me today is loving people so much that I wish I had the money to fly to Montana to help them move.  And it’s loving people who probably barely remember me.  I’m going to make it to that reunion someday, and whether those people remember me or not I’m going to give them full blown hugs and kisses and tears.  There will be none of the old “too cool to hug” shit.  I’m going to find people and I’m going to knock them over.  They’re going to see my love with their eyes, and they’re going to know beyond a shadow of a doubt that any “coolness” I may have once had is completely gone :) 

My love for people, through the process of letting go of Cale talking, has been a sort of repellent for negative thinking.  I’m trying to think of how to explain that.  Or maybe I should give you a scene out of a movie.

Oh!  I’ve got the perfect one!  And after talking about this, I’ll never be in danger of being cool again :)  In the fifth Harry Potter movie, at the end, just after Harry’s Godfather (along with his dream of having his own parent someday) dies, the evil wizard penetrates Harry’s mind in an attempt to torture him to death with all of his worst fears and all of his very worst memories.  But he sees his friends, and he forces himself to think about them.  

You can see the battle inside of his mind, like a slideshow of flashing memories that flip from good memory, to agonizing memory, to good, to agonizing.  What’s fascinating to me is the nature of the good memories.  They’re such lovely, typical, every day type memories of his friends and family (hugs, laughs, simple hanging out, etc.).  The battle finally ends with such a steady stream of love and friendship memories, that it repels the negative thinking and fear, and ultimately forces the evil wizard out of his mind.

I’ve always been intrigued by the character of Harry Potter (who's actually J.K. Rowling), because I’ve never been able to relate to the way he just seems to think naturally.  I’ve had to learn how to think that way, in part by reading (and watching) J.K. Rowling’s gorgeous little stories.

         

It’s such a paradox that having to let things go brings into focus the things that matter.  Erma Bombeck says in her book - If I Had My Life To Live Over (written after she found out she was dying from cancer) – “I would have burned the pink candle sculpted like a rose before it melted in storage, I would have invited friends over to dinner even if the carpet was stained, or the sofa faded, I would have cried and laughed less while watching television and more while watching life, I would’ve taken the time to listen to my grandfather ramble about his youth, when my kids kissed me impetuously, I would never have said, “Later… now go get washed up for dinner.”  There would have been more, ‘I love you’s, more I’m sorry’s.’  Don’t worry about who doesn’t like you, who has more, or who’s doing what.  Instead, let’s cherish the relationships we have with those who do love us.”

Yesterday, I had a friend tell me that every time he sees me he thinks, “There’s the proof.”

Proof?  “Proof of what!?” I asked.

“Proof that God exists,” he answered. 

My chest almost caved in on itself.  I mean, is that the sweetest thing to say or what?  I managed to refrain from saying, “Are you crazy!?”  Instead I just let myself experience the full course of my very favorite emotion – laughing and crying at the exact same time.

Thanks friends.  And I love you.

   

Miracles

"Anger is a killing thing:  it kills the man who angers, for each rage leaves him less than he had been before - it takes something from him."

Louis L'Amour

I have always had two conflicting, futuristic visions of myself.  And in the past few years, these visions of my future self have become more pronounced, almost well defined descriptions.  It's possible that they've become my actual options.  The potential for either is very real, but I can move towards whichever I prefer.  I have a choice, I think.

The first is that of a deeply embittered, sickly skinny, hunched over old woman, with matted gray hair sticking out of a make-shift bun on the back of her head.  She's probably around seventy years old, but looks ninety.  She smokes two packs of cigarettes per day, walks wobbly using a cane, and dresses in worn, black, second-hand clothes.

She lives in Paris, of course, so that she can soothe herself by wandering the Louvre every day alone, completely undisturbed by interruptions.  She speaks to no one.  Even in Paris, she refuses to even try to speak French (and if you've ever been to France, you know well that goes over).  Instead she spits angry, unintelligible, smoker's hacks at anyone who tries to talk to her, ensuring her alone-ness with perfect completion.

Her very demeanor sweats bitterness (ever met someone like this?), the dripping of which can be plainly seen by everyone.  She knows that it repels people, and she hates it.  She knows she makes it clear that she wants to be alone, but at the exact same time she suffers from an almost indescribable longing for companionship.

She's spent her life needing to be sure, needing to be safe, and needing to be right.  But she hasn't always been sure, certainly hasn't always been safe, and everyone else has usually been "wrong."  She's needed for things to go a certain way, but things have never seemed to go that way.  And she's been angry about all of this for a very long time.  Eventually she dies alone, in her Paris apartment, having missed all the things worthwhile in life because she never could get past herself. 

The second is that of a content, upright and healthy, beautifully maintained old woman, with shiny gray hair smoothed into a little bun on the back of her head.  She's probably around ninety years old, but looks seventy.  She quite smoking so long ago that the doctors can't tell that she was ever a smoker.  She takes calcium and eats vegetables (and makes her husband do the same:), walks comfortably with the exception of a little arthritis, and dresses in a well worn, light gray sweater.  She gets chilly.

She spends her days with her husband.  They take care of their sixty year old, non-verbal, Autistic son, and dream of wandering Louvre and trying to speak French.  Their other children live far away and don't get around to visit that often, so she visits with her husband, the people at the grocery store, and the post deliverers, ensuring her not alone-ness with perfect completion.

Her very demeanor oozes love, the dripping of which can be plainly seen by everyone.  She knows that it attracts people, and she likes it.  She knows she makes it clear that she enjoys companionship, but at the exact same time she doesn't long for it.  Her children never worry about whether or not they visit enough, because they know their parents are happy.  And that's all children ever really want from their parents.

She's spent her life wanting to be sure, wanting to be safe, and enjoying it very much when she was right:)  But she's been okay not being sure, okay not always being safe, and has consistently let go of the desire to make others "wrong."  She would've liked very much for things to have gone a certain way, and she's occasionally become angry when they haven't gone that way.  But she's always recognized anger itself as an enemy, and she's always refused to feed it with much attention.  Anger starves inside of her, so it eventually moves on of it's own accord in order to find better feeding ground.  

She has no regrets, because she's usually done everything she could think of for her son.  And even though none of it ever made any difference for him, she knows she's tried.  She knows she's done the best she could with the knowledge that she's had, which is the only thing she's ever had any power over anyway.  And she doesn't worry about the things that she's missed, because she couldn't have possibly known everything all the time.  She isn't God after all.  But she's done her little part, usually to the best of her ability, and she can smile about that.

She makes it to a hundred years old before her husband dies (that would put him at 105:), and to about a hundred and five herself before finally institutionalizing her son.  She tells her son that she loves him.  She tells him that his parents will always, always be with him.  Then she leaves, trusting that he will be taken care of.  And she dies with the housekeeper by her side, in her house, having participated fully in all the things worthwhile in life because she was usually able to get past herself.

It does seem like, with almost every action I take, I can foresee which vision I'm moving toward.  And lately I've been moving towards lady number one.  In spite of this, the people in my life have literally been taking my hand and pulling me towards lady number two.  You know who you are, and thank you for being brave enough to give me the truth in spite of what I might think of it.  We've had a couple of miracles happen.

We still have hope for Cale getting into Montana's early intervention program.  My husband made the phone call because, frankly, I've been a bit of a bitch lately.  My darling, gorgeous, wise and wonderful husband, called and asked the "women in charge," in Montana, to put my son's name onto Montana's "lottery" list without actually having moved there yet.  And he happened to get a hold of just the right woman at just the right time.

At first she was very discouraging.  She told Shane that there would be a very slim chance of Cale being selected because not only does he need to be on the list before he turns five, but he also needs to be selected before he turns five next month (see, this is where I would've lost it and ruined the whole thing).

Shane responded by telling her that we are under no illusions about Cale's "chances" at anything, but that we are his parents.  He told her that we believe their program might be Cale's last best chance of learning how to talk, and that we need to know we've done everything we can for our son.  He told her that we at least need to try to get him on that list, that it's more about knowing we've done everything we can than it is about him being selected.  Naturally, this woman fell in love with Shane.  And she has bent over backwards to get all of our information in on time to put Cale's name on the list before the next drawing.

She made us commit fully to moving back to Montana in time for Cale to start therapy, should he be selected.  And we did.  If Cale is selected, it will be on or before Sept. 8th of this year.  And if he is selected, then Shane will quit his job if need be and we will move back to Montana.

When Shane got off the phone, we asked each other how on earth we could afford to move if we need to.  And we decided that if it was supposed to happen, it would work itself out somehow.  The next day, Shane brought me a rather curious piece of mail.  A friend of ours has sent us a check for enough money to MOVE if we need to.  We both cried.  And it's going to go into our savings account for that purpose and that purpose alone.  And I don't have the first clue how to thank you enough friend.    

Obviously, my hopes are up high for Cale again.  And I'm in real danger, if he isn't selected, of giving lady number one a hell of a lead.  So I've been making a conscious effort to make peace with the worst case scenario.  And you know the thing that's become clear to me?  Again?  It's never going to be ABOUT whether or not Cale gets better.

Cale is exactly as he's supposed to be right now.  But, at the same time, I have to do the thing my husband told the lady in Montana.  I have to try.  It's all I can really do.  We have to keep doing our part (in this case, simply getting Cale on the list) whether it has any influence on Cale or not.  Because it's more about being able to look ourselves in the mirror and like who we see than it is about anything else.

Finding out that Shane and I are willing to give up our lives here in Arizona, to try to help our son, has been an incredibly awesome and wonderful thing to find out about ourselves.  It means our priorities are in the right place, and that God will take care of the rest.  We've already succeeded I think, whether Cale is selected or not.  Because we're quite happy with who we are at this moment.

You know the other thing that's become clear?  I'm not sure that lady number two existed at all before my son came along.  Maybe Cale's Autism is a gift in itself.  I mean, it's brought out the worst in me at times for sure.  But it's brought out the best in me as well.  And it's made me aware of the choice.  Shane asked me the other day if I really wasn't aware of the choice before Cale.  And I said, "I don't know.  But I do know that Cale has provided lady number two with lots and lots of good practice."

He laughed.         

Dropped

Have you ever heard the saying, "God didn't bring you this far to drop you on your ass?"

It's one of those trite little sayings that people say to you when your reserves are empty, and the general idea is for you to have "faith" that things are going to work out somehow.  It's a convenient little thing for the people who on their feet to say to the people who are not.

I still wish I could put into words the despair I feel about my son not talking.  It's not like a one time slam of hopelessness.  Instead it's like someone's put a little hole in my tank.  So it just leaks hope, slowly, steadily, agonizingly, during every moment of every day.  It must be what it feels like to bleed to death, only I never seem to die.  I just keep draining and draining.

I can hardly stand to participate in my son's therapies anymore.  It's just means one more hour of watching a therapist fail miserably with my son, one more hour of him fighting and screaming and fighting and screaming, one more hour wasted.  Every moment that he doesn't talk past the age of four years old is a moment closer to him never being able to talk at all.  And every day is filled with an endless number of these moments.  Every time I look at my son, he's still not talking.  And I don't know how to, deep down, make that okay with me.  It makes me resent the therapists.  It makes me resent God.  And, worst of all, it makes me resent my son.  It's enough to kill a mother.

Shane and I, and Cale's psychiatrist, have actually reached the point where our biggest hope is to medicate Cale heavily enough to keep the pain he experiences, by not being able to communicate, to a minimum.  He gets incredibly frustrated by not being able to communicate, and he screams and screams and self-harms and screams.  But if he's sedated enough, he's not as disturbed by it.  Then he at least seems happier.  It's a horrible, horrible thing to have your biggest hope become proper sedation.  It's what should happen for a person just before they die, to keep them comfortable.  It's not what should happen for a child who's just starting out in life.

Well, we've recently had a spark of hope.  We found out, a couple of months ago, that the cut-off age for the early invention program in Montana is five years old.  The cut-off age for the same program here in Arizona is three years old.  What that means is that Cale is too old to enter the program here, but he's not yet too old to enter it in Montana.

The state early intervention programs provide ABA therapy for children with Autism, which is a behavior therapy that, when provided 20+ hours per week, has an 85% to 90% success rate in helping children with Autism learn how to talk.  The way it works in Montana goes like this - you put your child's name on the list and, once every three years, they randomly pick fifty kids (yes, out of the entire state) off of the list.  The fifty kids who are picked get 20+ hours of ABA therapy per week, and the rest of the kids in the state don't get any.  The disgusting fact is that they actually call it a "lottery." 

We've always thought it was too late for Cale to get ABA therapy through a state program.  And since Shane's insurance company doesn't cover anything at all for Autism, and ABA therapy is impossibly expensive to pay for one privately, I had resigned myself to believing that Cale might never learn to talk.  But this news brought us some hope again.  If he did win this "lottery" then he would get 20+ hours of ABA therapy per week until he was eight years old.

The problem, of course, is that in order to put your child's name on the list, you must be a resident of the state of Montana before your child turns five (which, for Cale, is on Sept. 8th of this year).  So we decided that we needed to move back to Montana and that we needed to do it fast.

There were other reasons to move back as well.  I could afford to go back to school and work on my doctorate in Montana.  And, our entire family lives in Montana.  And, we've reached the point, financially, where we can't make our house payment here in Arizona anymore.

When we bought our house here, we didn't yet know that we had two disabled children who would require someone to be around for countless, useless therapy sessions every day.  We also always assumed that Cale would go to all day kindergarten this year, freeing me up to go back to work about the same time our students loan payments came due.  However, as it turns out, he misses the kindergarten cut-off age here by one week.  Therefore, he has to do another year of pre-school (which is only two hours per day, four days per week).  I tried to fight this, playing the special ed. card and everything.  But they still won't let him into kindergarten this year.  So I have to stay home with him for another year, and our student loans have come due, and they've made it painfully clear that we can't defer them any longer.  In a nut-shell, we're losing our house.  

My grandma wants us to move back to Montana and get Cale on this list so badly that she offered to help us buy my mom's old house in Montana.  It's only a two bedroom with an unfinished basement.  But we figured it would be worth it for our three kids to share a room until we could get the basement finished, especially if it meant Cale could get on this list.  So we devised a plan of attack, and tackled several things simultaneously.

We went back to Montana for six weeks and rented my mom's house so that we could get it ready to move into.  At the same time, Shane worked virtually.  The idea was for him to show the company that he works for that he could do his job virtually.  That way, they might be okay with him working from Montana on a permanent basis.  He put in extra hours and took business calls at all hours of the day and night (of course, these are things he always does anyway), and he did such a good job that they complimented him on no one noticing that he was in another state.  And since other employees from this company work virtually, Shane thought it was a no-brainer that they'd let him do it too.

At the end of the six weeks, once we'd really gotten all of the information and had finalized the decision, Shane called and asked his boss about staying in Montana permanently.  He explained the early invention program and what it might mean for Cale, and he asked his boss to support him.  His boss did support him, which meant that it was a go.  However, the boss informed Shane that it could be a bit of a process to get it finalized.  So we came back to Arizona and began the "process."

I have to say, I almost felt like I was coming back to life again.  It was like someone had plugged the hole and my tank was filling up again all by itself.  It had been so long since I'd felt that way.  And I kept repeating to myself and to anyone else who would listen, "There's still hope of Cale learning to talk.  Can you believe there's still hope of Cale learning to talk?"  I can't tell you how it nourished me to have that kind of hope again.  My sweet, sweet boy, would have a chance.  And we would be able to give him that chance.  And we were already devising ways to get him off the medication.  Because our boy might have a chance of learning how to talk. 

I was also excited that I'd be able to go back to school and begin work on my doctorate.  You see, Cale doesn't miss the kindergarten cut-off in Montana.  He'd go to kindergarten all day there, and I'd be freed up during the day to begin school again myself.  We'd have a little house that was our very own, which took a great deal of the sting out of losing our house here.  And we'd be with family and friends again.  Wow.  With all that we've been through in the last few years, it was finally all going to be worth it.  With all that we've been through, we were finally going to be able to pick up our poor, old, brutalized hearts, and go home.  Where our son would have a chance at learning how to talk.  God.  It all just seemed too unbelievably good to be true.

Well, it was of course.  The company said, "No."

The decision didn't come from Shane's boss.  The decision came from upper levels, levels high enough to be completely detached from Cale and whether or not he learns how to talk.  And the whole thing has left my poor husband, my otherwise unusually optimist, cheerful husband, utterly and indescribably down.  He hasn't actually been back to work since he got the news.  

The question for us, at this point, is what exact lengths are we willing to go to to get Cale on this list?  I've already sacrificed my career for the sake of our kids.  Are we willing to sacrifice Shane's as well?  Are we willing to sacrifice the security of all of our children?  Are we really supposed to gut ourselves completely so that Cale might have place on Montana's Wheel of Fortune?  If not, then I guess we stay here.  Where we'll lose our house and hope we can find something to rent with shitty credit.  Where I can't go to school because I have to stay at home to participate in pointless therapies.  And where my son is medicated.  Heavily.  Because he isn't learning how to talk.

I keep trying to find something good in this situation, some little nugget of wisdom to give you here.  But I guess I just don't know what to call this besides, "Dropped on your ass."  And the question for me personally has become - how can a person continue to function when the God that is personal to them, who is supposed to love them and take care of them, lifts them up so high and then drops them with such entirety?  And the answer to that, I'm afraid, is that I really don't know.  Seeing an old camp friend this week isn't even cheering me out of this one.  And seeing an old friend from camp is something, I must confess, I would ordinarily call a miracle.  But this time I'm going to call it a coincidence.