Part Six - You Ain't Seen Nothin Yet

"You can call this web God, the Tao, the Great Spirit, the Infinite Mystery, Mother or Father, but it can only be known as love."

Joan Borysenko

Do you ever find yourself beside yourself?  When your mind has taken over your body so completely that the rest of you is left on the outside looking in?  For most of my life, and especially before I had my kids, I thought that I was my mind.  You know what I mean?  I didn’t realize that listening to the the stuff going on inside of mind (especially in moments of intense fear and/or threatened ego) was optional, or that there was even more to me than that.  I mean, I knew with my mind that I was more than my mind.  I just hadn’t become aware of it with the rest of me yet, if that makes any sense.  Anyway, it took me years to become aware of the rest of me, and, more importantly, to become able to be that instead when my mind has taken over.  Eckhart Tolle, in his book A New Earth, calls this “watching.”  

I found myself walking down the street in the dark, in the midst of a temper tantrum that could’ve rivaled that of any two year old.  So I prayed, because that’s what I’ve been taught to do under such circumstances.  And I think my prayer deteriorated into something like this, “Dear God.  I cannot wait to get up to you in heaven, because I cannot wait to see the look on your face when I finally get my hands around your neck.  Amen.”

Strangely, this didn’t relieve my anger.

Did you know that 80% of marriages of Autism parents end in divorce?  It was common knowledge until recently, when somebody wrote an article claiming that this statistic is actually untrue.  Of course, the article didn’t specify whether those studied were parents of kids with Autism as in Isabel, or Autism as in Cale, which are two distinctly different beasts.  Instead, it grouped all Autism parents into one category.  So now, whenever you google Autism parents and divorce rates, all you see is this one article “debunking the 80% myth.”  And as I walked, I thought, “Yeah?  Well, fuck whoever wrote that article.”   

“I guess this is the fate of the stay at home,” my mind continued on its bloody rampage, “a job that’s number of hours on duty rivals only those of slave laborers in third world countries, and the details of which are open to constant scrutiny by He Who Makes The Money, only to end up with no keys, no vehicle, no house, no stuff, nothing at all to my name, because everything’s in his name, because he’s the one who makes the money.  Oh, how did I end up like this?”

It’s exhausting, isn’t it?  I know.  And I have to live with my mind all the time.

“If we got divorced, then I wouldn’t have to work my ass off for free anywhere ever again!  I could update my teaching license and get a teaching job, and then I could buy my very own little house.  And we could trade off with the kids!  You know?  Three days with Cale and then three with the other two, then switch, or we could do every other week maybe.  Oohhh, can you imagine anything more heavenly three whole days in a row, every single week, with no screaming?”   

Let me stop for a moment here and give you a little insight into my thinking, because it might help clarify things a bit.  We sometimes go through periods of time where I can foresee the future possibility of having to give up custody of my son.  You see, if a family doesn’t have the money to place a child in a group home, but they also cannot keep the child in their home, their only option is to relinquish custody of the child to the state.  What that means is that the parents forgo any right to any say in where their child goes, or how their child is treated when he/she gets there.  It’s a thought that is terrifying beyond any kind of reason. 

We have family members who have been through this with their nonverbal son with Autism.  They gave up custody of their child when he was around nine years old, because they could no longer protect themselves from him.  This child in his twenties now, is still mostly nonverbal (he never got therapy, because therapy for Autism is actually a relatively new phenomenon), and still lives in a group home.  And his parents visit him often.

My mother in law brought this up in conversation last summer (as these particular family members are in her immediate family).  She knew this child when he was very little, and she knows that Cale is very much like him.  So she, too, foresees this as a future possibility for Cale.  And she tries to comfort Shane and me by telling us that it really was the best decision for everyone.

There are only two other options.  The first is to keep Cale in the home, with no respite care or anything here in Montana, and hope that he’ll never seriously injure one of our other two children.  I mean, even though I provide mostly constant supervision, I do occasionally have to take an incredibly selfish moment to pee.  This can be dangerous, because I am personally responsible for the safety of all of my children.  And if this is ever jeopardized, then the state has the right to come in and seize custody of all of them.

Now, I’ve told caseworkers left and right that as Cale grows bigger and bigger, and continues to not get better and not get better, and continues to become more and more aggressive as a direct result of his inability to talk (and he’s still not learning how to talk), that there’s eventually going to come a time when I will no longer be responsible for the safety of the people in my house.  But they always just look at me like they don’t know what to do with that.  And if they don’t know what to do with it, then who does?  Because it’s something I’m going to need to know.

I can handle Cale trashing my house.  He’s always creating the wreckage of a brand new tantrum while I’m still busy cleaning up the wreckage of the last.  But it’s the aggression that scares me.  He's not always aggressive.  But he's aggressive just often enough that we'll no longer take him anywhere where there might be other children.  And he's aggressive just often enough that we've taught our other children to run away fast when Cale attacks.

It's not that big of a deal now because Cale's only five and a half, but once he reaches the size of his older brother (who’s only eight - that's only a little over two years away), I’m going to start showing up places with black eyes.  And so are my other two children.  And if he ever manages to succeed in pushing one of my other two children down the stairs while I’m peeing, or manages to succeed in shattering one of our picture windows with a hard plastic toy (he adores the sound of breaking glass), then there may be serious injuries.

I'm afraid it’s not a matter of if, it’s a matter of when.  And I’m still setting aside all of the moral implications of this (like the fact that my other two children shouldn’t have to live like that), and focusing only on what it would mean for Cale.  I’m still stuck on whether or not I could survive ever having to give him up.  But if someone in our house is ever seriously injured by Cale, will I even have a choice?          

The second option is for Shane and me to separate, and for one of us to have Cale while the other has the other two children, and then switch off.  And sometimes the fear that surrounds the idea of giving Cale to the state, triggers distorted thinking about my marriage.  Then, especially under the lash of a fantastic excuse, like a bruised ego, this thinking gets really exaggerated.           

My own powerlessness was about to overcome me entirely as I walked down the street, when all of a sudden it occurred to me that I didn’t have to go back home.  Ever, I mean.  I was free.  Completely and irrevocably free!  No more baking.  No more cleaning up broken glass and poop and vomit.  No more listening to the sometimes constant screaming!  No more keeping my son from hitting and pushing his siblings!  No more getting hit in the face!  And, most of all, no future decisions that I won’t be able to survive!  I was free!!  It was physically exhilarating, almost to the point where I thought I might actually start levitating off of the ground.

I realized that there was enough money in our checking account right then to get me just about anywhere in the world that I wanted to go.  I thought of Paris immediately.  But really, how would I get along in Paris by myself?  I don’t speak French.  Shane’s the one who speaks French.  “Jesus,” I thought, “Can I do nothing without this man?”

I reached a corner where I could turn right and walk towards a place where I knew some friends of mine were meeting, friends who know Shane well, friends who know me well, friends who would surely use their words to try and sooth me into going back home.  Therefore, I turned left.

“Maybe England,” I thought, “I could get along just fine all by myself in England.  But it is awfully far away, and I do want to be able to see my children periodically.  Maybe Portland.  Portland is much closer and almost just as green.  I used to love Portland, but it’s been an awfully long time since I’ve been there.”

I thought about some old friends of mine who used to live in Portland, and I tried to imagine them looking middle aged.  That made me smile.  Then I thought that I should maybe go and see them.  I mean, hadn’t I been meaning to do that for about a hundred years now?  What better way to use my new found freedom than to go visiting?  But then I thought about the fact that we’re all grown up now, with spouses and kids and gloriously busy lives.

I thought about their lives, lives that I was considering asking these people to set aside for a moment in order to spend some time with me.  I imagined boys that used to dance naked around bon fires, sitting at desks in front of computers in button down shirts, anxious to get home to the smell of pot roast and to the comfort of chubby baby arms.  And I imagined girls that used to drink beer in the mountains under the moonlight, throwing pot roast into crock pots before rushing off to work, so that the smell would be filling the air for everyone later in the evening.

It stopped me dead in my tracks to be honest with you, and made me think hard about the things that really matter.  In fact, it was almost like waking up all of a sudden, because as I realized that I couldn't ask them to set aside their lives, I was genuinely startled to discover that I was considering setting aside my own life.  I mean, how could I actually be considering setting aside my own life?  It never ceases to amaze me just how far away from who I am my mind is capable of taking me when it's afraid. 

I thought about Shane again, and about the fact that I can’t imagine being away from him, even in the midst of something as glorious as three days every week of peace and quiet.  You see, I love Shane first.  And I love my children second.  Maybe that makes me some sort of terrible mother, but it’s true.  And it’s always been true.  I just needed to remember it, that’s all.  I needed to be using my new found freedom to go home.

“Well, shit,” I thought.  The levity was gone, and I was back on the ground firmly with both feet.  I called a friend of mine who came and picked me up.  She took me out for a cup of coffee, screwed my head back on straight, and then took me home to swallow my pride, just in time for me to tuck my children into bed.

I sometimes feel like that zebra in the kid’s movie Madagascar.  You know the one?  He’s lives in a zoo, but he wants to live in the wild?  So they put a T.V. in front of a treadmill in his cage for him, with pictures of the wild on it.  And he runs and runs and runs on the treadmill towards the T.V.

That’s how I’ve started to feel about anything that might help my son – this therapy and that therapy, this doctor and that doctor, this medication and that medication, this herb and that herb, this theory and that theory, this diet and that diet, and now my healer’s ideas, the list goes on and on, because there’s always something else to spend your time and money and energy trying – and that the next thing, whatever it is, is really just the next picture on the T.V.  And it’s not just the fact that my son never gets better that I resent (and I don't consider being a little calmer to be better, I consider talking and being able to function in the world to be better).  It’s also the running on the treadmill that I resent. 

Shane always asks me, “So, why do you do it then?”

And the answer is simple.  Because what if the next picture on the T.V. is the real thing this time?  Yet, I don’t chase it because the picture had never been real before?  And what if, as a direct result of my not chasing the real thing, my son ends up institutionalized some day?  

I’ve inventoried the hell out of my fear of Cale ending up in a group home.  And I’ve taken, and am continuing to take, a look at all of the areas of my life that this fear lands on.  I know that when I get pissed at Shane for not helping me enough (even in the midst of him helping me plenty), it’s because I’m afraid of Cale ending up in a group home.  And when I get pissed at my other kids for not being a good example for Cale of how to eat healthy food, it’s because I’m afraid of Cale ending up in a group home.  And when I get pissed at Cale for refusing to eat the food he should be eating, or for escaping out the front door, or for not being able to go to the park (or anywhere else where there might be other kids) because he might hurt others, or for continuing to not talk, it’s because I’m afraid of him ending up in a group home. 

When I get pissed that the therapists aren’t doing it right, or the schools aren’t doing it right, or the doctors and healers aren’t doing it right, it’s because I’m afraid of Cale ending up in a group home.  And when I try to sabotage my marriage, it’s because I’m afraid of Cale ending up in a group home.  Am I making my point?  It all stems from the same fear.

It’s one thing to know about a fear, but it’s quite another to do something about it.  It means turning to God again (Remember him?  The one I intend to strangle when I see him?).  Well, I don’t like turning to God when I’m pissed at him.  Apparently, I’d rather just be pissed at everyone instead.  Apparently, I’d rather tell my healer exactly where she can shove her Basmati rice.  And apparently, I’d rather sabotage my marriage.  It’s all been very interesting to “watch” so far, but it really has come time to do something about it.

I went to a retreat a couple of months ago, and a woman there gave us a meditation suggestion.  The meditation suggestion was this – go to the place inside of you that hurts (rather than imagining flowers and sunshine and Jesus or whatever the hell people generally imagine) and then stay there, embrace it, and love it.

Well, I couldn’t embrace it and love it.  In fact, during the retreat itself, it was all I could do to stay there for ten seconds.  Actually, I couldn't even show up to meditate the first morning.  It was the second morning that I was able to stay there for ten seconds before I drifted off into the flowers and sunshine and strangling Jesus again.  But I’ve been practicing doing this meditation ever since.

I go to my future image of Cale.  He’s fifty something years old and a ward of the state, living in an institution with gray carpeting, white walls, and horrible florescent lighting.  And he’s sitting on his bed wondering where his parents are.

His parents are dead, his mother from lung cancer because she never could once and for all quit smoking.  And his brother and sister live far away.  They have spouses and kids and gloriously busy lives, so they just don’t get around to see him very often.  Therefore, nobody loves him.  I mean, the people in the institution bring him food that he won’t eat.  And they change his diaper, because he never has learned how to poop in the damn toilet.  So they take care of him, but they don’t talk to him because he doesn’t talk back.  And they don’t love him.  And he doesn’t understand why his mom and dad aren’t there.  He doesn’t understand why nobody loves him.

I’ve been practicing staying there for a little longer and a little longer and a little longer.  And, just recently, I was able to stay there long enough to actually see what would happen next.  You see, when my son gets stressed out, he likes to pour water.  In fact, we’ve often joked that this is Cale’s form of meditation.  It calms him like nothing else does.  And he knows how to communicate that he wants to pour water.  He pulls your arm off, trying to pull you over to the bathtub.  And he puts your hand on the faucet and grabs his cup.

Any caregiver in any institution will learn very quickly that everyone’s lives will be a lot easier if they let Cale take baths a lot.  So I saw Cale get off of his bed and pull a caregiver over to his bathtub.  I saw him grab a cup, get into the warm water, and start pouring.  Then I got closer and closer to the water pouring out of the cup, until I actually disappeared into it.  And guess what was in the water?

Shit.  This might be difficult to explain.  I know that I’ve talked before about an old church camp that I used to go to, and that it’s made people want to vomit that I’m so sentimental about it.  Well, it's where I found God as a little girl and, to this day, it gives me a visual representation of a power that doesn’t hold still, and makes it hold still.  I know that I really can't make that make sense.  All I know is that, for me, God holds still there.

What I saw was that lake, and those trees, and those familiar faces.  There were a thousand memories of that old camp in the pouring water – the sounds of people talking, the sounds of those silly songs (kumbaya My Lord, kumbaya - what does kumbaya even mean anyway?  And what could one tin soldier riding off of a bloody battlefield possibly have to do with Jesus?), guitars playing, the smell of the trees and the lake and the campfires, the sights of kids with their arms around each other, or kids without their arms around each other because they were mad at each other, teenage angst, late night girl talks in the cabin, saran wrapping toilet seats, people eating mulch (don’t ask).

A friend, who later became a doctor I think, ripping a cigarette out of the hand of his little brother, smoking cigarettes in all of the places we weren't supposed to be smoking cigarettes, blue eyes looking at me when I was sad, my brother actually laughing out loud in the midst of a bunch of his own friends, group hugs, and laughter.  Lots and lots of laughter, God we had fun there.  And then there was that lake again, that mystical magnificent lake that’s so gorgeous that even God himself is entranced by it, and is made to hold still there forever.  Then I came back out of the pouring water again and saw my son smiling at his cup.  And I could finally see why.

I told Shane the second I saw him, “God's in the water!  He’s in the pouring water!  See?  I have to do all of this stuff – pray, meditate, reach out to others, etc. – to stay close to God.  And our parents and grandparents have to go to church to stay close to God.  Regular people have to do all of this stuff in order to stay close to God.  But Cale’s already there.  He was born there.  He’s never going to be alone.  And he’s never going to be unloved.” 

Shane just looked at me funny, “That’s nice sweetie.”

Poor guy.  He has to live with my mind too.

Cale's doing better (meaning that he's a little calmer these days) by the way.  We're officially half way through the process of taking him off of his psychiatric medication.  Each time they lower the dose he has a few days of constant tantruming, but then he levels out again.  Then he's good for two weeks and then they lower it again.  Then he tantrums, levels out, etc.  He should be off it entirely mid May. 

He's eating nothing but hamburger and raisins, but these are both on the "good for him" list.  And we're taking him to an ND now as suggested by my healer (my healer will keep seeing him too, but she wants everything monitored by a doctor, which is practical I guess).  The new doctor wants him to eat vegetables.  God, when will they ever quit harassing me with the vegetables?  I plan to tell her that if she wants him to eat vegetables then she'll have to supplement, because I'm not going to make him puke anymore.

And just today, Cale hasn't pushed his sister one time.