Reflections (part 2 of 3)

“Know him as the radiant light of lights.  There shines not the sun, neither moon nor star, Nor flash of lightening, nor fire lit on earth.”

The Upanishads

I spent the rest of the afternoon, after our meeting with our state caseworker, in the back yard, chain smoking cigarettes so as to stay tethered to some sort of sanity as I watched my son refuse to interact with me (if you try to play in the water with Cale, he either hits you in the face or starts banging his head onto the concrete, so everyone just has to stay away from him while he plays in the water), and feeling so damn sorry for myself that I wondered if I might magically produce a diaper to go along with my whiny baby attitude.       

I wondered if all hope of ever having any kind of a decent family life, where my other two kids might actually get to participate in sports, or go to cub scouts, or girl scouts, or dance classes, etc., or where Shane and I might actually be able to go out on a date once in awhile, or where I might one day be able to have a career of my own, or hell, where any of us could ever leave the damn house at all, was utterly and completely gone.   

I wondered if I would spend the rest of my life chain smoking cigarettes in this back yard, entirely devoted to watching Cale pour water, so that he can simply not notice when I die.  I mean, my mother-in-law’s nephew doesn’t even know that his mom is gone. 

I remembered all of the times in which I’ve heard the comment, “Don’t worry, God has a plan!” and I actually began to panic as I thought, “My God.  Could this really be it?  Is THIS God’s plan?”

I wondered how it is that the company that Shane works for gets away with not covering therapy for Autism or developmental disabilities.  I mean, how is it that such a successful corporation (and they’re by no means the only one that gets away with this) can simply pass us off onto the states?  And I wondered if it was possible that we could be waiting for a Medicaid waiver forever.  And I wondered if Shane’s family had given up on Cale.  I mean, the fact that my sister-in-law has started looking for group homes for him could be interpreted that way.  

I wondered why it is that nobody, including God, seems to be willing to fight for Cale.  “Doesn’t anybody give a shit that we’re losing him?!” I thought, “Doesn’t anybody give a shit that he’s slipping away?!”

I looked at Cale.  He was busily filling his bucket with water from the hose, and then dumping it out onto the concrete, filling it again, and dumping it out, filling it again, and dumping it out, occasionally deviating slightly by dumping the water directly over his head, all while smiling big at the imaginary friends that play in the air beside him.

“Maybe he’s already gone,” I thought, “Maybe my mother in law, who has seen this before in her own brother’s son, knows something that I don’t know, or that I simply refuse to accept.”

I couldn’t stand it.

“Are we really supposed to just give up on him?” I thought, “A group home?  Really?  And will I have to live the rest of my life knowing that therapy might’ve prevented it, but that I was unable to get it for him?  Is THIS God’s plan?”

I began bumping my own head on the table in front of me.

“Wow,” I thought, “If there is such a thing as destiny, or if God does, indeed, have a plan, then he’s really kind of an asshole, isn’t he?  He’s just sitting there doing nothing, on top of all of his “infinite power,” watching me watch my child slip away.  He couldn’t possibly be this big of an asshole.  It makes so much more sense that he’s not actually there.” 

I’m one who occasionally needs to understand something with my brain.  I mean, blind faith is great and all.  And when one needs to feel the actual closeness of God, the last place to look is to philosophic thought (that’s just my own opinion of course).  But sometimes I come up against something that I just can’t get past until I understand it.  And I believe that God knows this about me, and accommodates – much like my daughter, at school, having to have her assignments “modified” (which really means lessened) to accommodate her level of ability - because when it comes to spirituality, logic is probably, at best, the bonehead version.  But there have been a lot of times in which I’ve needed bonehead version. 

I had just concluded that God wasn’t there.  Not only that, but I had been arriving at this conclusion over and over again this summer, and it was getting rather old.  Why did I keep arriving at this conclusion?  What was it about my concept of God that kept allowing him to be shimmied right on out of existence?   

I read the Conversations With God books, by Neal Donald Walsh, years ago.  And these, along with Eckhart Tolle’s A New Earth, and a few of the other books from the “new age” section at Barnes and Noble, in addition to more books on religion, philosophy, psychology, and healing than I can count, eventually led me to some of the ancient texts - the Bible, the Kabbalah, the Tao-Te-Ching, the Upanishads, etc.  And thinking about all of these made me realize that I must have a very thick skull if I’ve needed so much help in forming a concept of God that I can actually live with.

All of these books have, for me, been like pieces of the same puzzle, or maybe they’re more like fingers that all point in the same direction.  All of them point to the fundamental unity of God, or Life, or the universe, or whatever you want to call it, especially since I’m one that more easily understands spiritual principals when they’re told in story form, and since I like to think that I can easily see past the vast differences in times and places that these teachings have been written in.

All books, for me, are about spirituality - whether it’s a novel detailing one section of a particular character’s life journey, or a text on physics that deals with the behavior of atoms (yes, I look for God in Physics books as well).  It’s all the same.  It’s all the unfolding of God, or Life, or the Universe, or whatever you want to call it.  God is everything.  And I don’t mean that God is IN everything.  I mean that he IS everything.  Literally. 

Then what is evil?  Or “Ego” (as Eckhart Tolle calls it)?  Or fear?  Or death?  Or darkness?  Or bad?  Or cold?  Etc.  Are all of these things, too, God?  And the answer, for me, for a great number of years, was yes.

If I understand it correctly, God manifested into physical form.  In other words, he turned himself into the universe, into the world, and into everything and everyone in the world (everything is made of the same stuff - even the physics books say that human flesh is made of the same elemental stuff that the stars are made of). 

In doing this, God created (or maybe it was simply a result of manifesting into physical form) “ego” or “self” (in other words, we “forgot” that we’re not really separate from each other or from the world) so that we could experience “others,” fear so that we could appreciate peace, death so that we could appreciate life, darkness so that we could appreciate light, bad so that we could appreciate good… blah, blah, blah, you get the idea.  If we had nothing to compare warmth too, we wouldn’t know that it was warmth.  If we had nothing to compare God to, we wouldn’t know that it was God.  We’d all still be living in one big blissful bubble having no idea at all that it was bliss.

Then (or at the same time) we developed consciousness (or free will) so that we could choose between certain opposites – between “good” and “bad.”  But it’s really all just God anyway.  I mean, have you ever noticed that you learn more from screwing things up than you do from getting things right?  The point isn’t to get things right.  The point is to keep trying to get things right.

This is kind of a crude rundown on the concept of God that I’ve had for a long time.  It’s a delightful concept, isn’t it?  I mean, it brings the whole world to life.  The stars are God.  The trees are God.  The atoms and the spaces in between are God.  It’s an idea that I’ve doted on, an idea that I’ve loved, an idea that I’ve lived and breathed for, for a lot of years.  And it worked really, really well for me clear up until it completely stopped working for me this summer.

As you may have spotted, there are a couple of weak spots in my conception.  First of all, it leaves out the idea of a God who is personal to me, or, at the very least, it makes the idea of a God who is personal to me unnecessary.  And this isn’t good, because, for me, having a personal God is necessary.  The second weak spot is this - if everything is God, then I’m God too.  Or, at least, one little part of God.   

This is a particularly bad combination for somebody like me, because these weak spots tend to affect each other.  Let me see if I can explain.

If I’m God, then I’m, at least in part, responsible for the well-being of my son.  And this is fine, as long as I have the power with which to help Cale (I can do the footwork – take him to the doctors, try to get him therapy, keep up on the latest Autism research, etc.).  But what am I supposed to do when I reach the end of my power to help Cale?  What am I supposed to do when I can’t get him therapy (I have no power over our insurance company or the state)?  And what am I supposed to make of it when every attempt to help my son seems to turn to shit (our last attempt actually landed him in the hospital). 

What I do is try to tap into God’s power, which makes sense doesn’t it?  My gas tank gets emptied, so I go to the gas station (the source) for more gas (power).  I pray.  And pray.  And pray.  And I keep trying to do the footwork (keep harassing the insurance company and the state and the doctors, etc.) because I know that if I could just try hard enough, could just get things to go the way that I think they should go, then my son could heal.  And my will is to have a healthy son, or, at the very least, to not have to keep living the way that we’ve been living this summer.  And if God is, indeed, personal to me, does actually love me, it must be his will too.  Can you see the problem?  

In one of my books about Shamanism, somebody (and I can’t recall who right now) said that a good Shaman always waits for a person to ask for healing before that Shaman will attempt to help that person, not only because it’s the person’s actual act of asking for help that brings about a large portion of any healing that follows, but also because any attempt to heal a person who doesn’t want to be healed is considered a violation of that person’s spirit.  Oy, I probably screwed up the wording of this royally, but you get the idea. 

My son has never asked for healing (he can’t, because he can’t talk), but you could assume that some of his behavior indicates that he would like to feel better than he does.  I don’t know, however, if this really counts.  And I don’t exactly have anybody that I can ask, because, as you’re probably aware, Shamans aren’t very easy to come by these days.  But if anybody knows one then give me a call, will you?  And I mean a real one, not some “new age” hippie from Eugene who went to a workshop one time.

So what if Cale isn’t interested in being “healed?”  What if he just is who he is?  What if pouring water and peeing on the carpet is really all that he ever wants to do with his life?  Or what if it’s actually God’s will (God’s plan) for Cale to live like this for the rest of his life, and for us to live with him being like this for the rest of our lives?  What if I can’t stand God’s plan?

The problem with experiencing pure, unadulterated powerlessness to help my son, right underneath the nose of a God who is personal to me, who supposedly loves me, and who has “infinite power” but who refuses to do anything at all to help us, is that it means that my “personal God” must not love me at all.  In fact, he must actually hate me.  How else could he just leave me to watch my son fade away, with no way at all to help him? 

The only thing that makes more sense than my personal God hating me (it doesn’t make sense to me that God hates anybody) is that my personal God doesn’t actually exist.  And this sends my entire concept of God toppling to the ground.  It shouldn’t, seeing as how my concept doesn’t require a personal God to make it work logically.  But, you see, it kills the whole world.  The stars become regular old stars.  The trees become regular old trees.  The atoms and the spaces in between become regular old, Godless little atoms and regular old, Godless little spaces in between.  And I stop doting.  I stop loving.  I stop wanting to live.  I stop wanting to breathe.

I lit another cigarette and tried to blow the smoke away from Cale.  “So,” I began jumping up and down on my weak spots again, “Either God’s an asshole, or he doesn’t exist.  What is my choice to be?”

I laid my head down on the table in front of me and thought about it for a long, long time (about ten minutes).  Then, I suddenly sat straight up in my chair.  “The concept is inadequate,” I declared out loud to Cale and all of his imaginary little friends.  None of them bothered to look at me.

What had come to mind was a friend of mine whose daughter somehow survived Leukemia.  But, you see, they didn’t know, for a long time, whether she would survive it or not.  She’d get sort of better, and then get sick again.  And then better again.  And then sick again.  This went on for months and months and months, and I often wonder how many times my friend had to tolerate the comment, “Don’t worry, God has a plan!” 

I thought about my friend constantly during that time.  Constantly.  But I had nothing to offer him in the way of comfort.  I mean, can you imagine if I had called to offer up my perfectly inadequate little conception of God?  “God created death so that we could appreciate life.”  Jesus.  He would’ve been right to come straight through the cell phone receiver and rip my hair out by the chunks.  All I could really do was to call, occasionally, and listen, and hope that he would talk.

This got me thinking, though, that there must be a God.  I mean, if you knew this friend of mine at all, you’d never be able to question the existence of God again:).  Not only has he always been a true example of God’s undying grace, but he does celebrate life in a truly enviable way today.  “So what if it’s not so much that my conception is inaccurate?” I thought, “What if it’s just inadequate?  Maybe it’s just time for God to grow a little.  You know?  To get just a little bit bigger.”

What I love about the Dali Lama is that he never tries to convince anyone to become a Buddhist.  Instead he talks about butterflies.  He saw a mother butterfly’s willingness to sacrifice her own life for the well-being of her newly hatched caterpillars.  Then he talked about how this butterfly’s behavior didn’t come from religion, or philosophy, or politics, or race, or economics, etc., all of which are on a secondary level of our consciousness, but that this butterfly’s behavior came from something much more fundamental instead.  He says that we should relate to each other more often on this fundamental level instead on the secondary.  Neat huh? 

He also says that you can’t solve a problem using the same thinking that you created the problem with.  Ouch.      

Reflections (part 3 of 3)

“The Lord is the light reflected by all.  He shining, everything shines after him.”

The Upanishads

I adore my neighborhood in Montana.  I live in a little green bungalow that I’d like to paint blue, which sits on a slight hill under a canopy of tall, leafy green trees.  And I like to sit out on my front porch in the mornings, sipping my cup of coffee and watching my neighbors emerge, one by one, from their tidy, flower lined houses, to sip their cups of coffee in Adirondack chairs in their front yards.  They smile and wave at me, “Good morning!”

“Yes, it is,” I wave back, “It’s a beautiful morning.”

This place is vastly different from my neighborhood in Arizona, where all of the houses had front facing garages, never-ending rows of cars sized mouths that tended to swallow my neighbors, one by one, before they even had the opportunity to escape their cars.   

While the thinking behind the designs of those desert neighborhoods must have had something to do with ensuring that no one be inconvenienced by the heat, they also had the unfortunate side effect of ensuring that no one be inconvenienced by seeing each other.  I used to get so lonely there.  We’ve been back in Montana for almost eight months now, and it still feels good to be home.     

My neighbors have no idea that my bathroom is usually in the process of being flooded as I’m waving at them from my front porch.  And I sometimes wonder if they have any clue at all about the kinds of things that go on in our house, but then I remember that they’re probably too busy thinking about their own lives to give us a second thought.  Cale was in the bathtub, so I knew that I had a little bit of time to grow a bigger God before the bathroom floor was completely under water.  And I had everything that I needed - a fresh cup of coffee, a mile high stack of books, and a vague sense that I needed an entirely new way of thinking. 

My existing problems were these.  Number one – either God’s an asshole, or he doesn’t exist.  Number two – I am (a least a part of) God.  So I picked a book, randomly, out of my stack, and was surprised to discover that it was a new one that I hadn’t gotten around to reading yet.  In fact, I don’t even remember buying it, but the fresh receipt was still on the inside.  I opened it up to a random page, and began to read the things, right off the bat, that forever changed my conception of God.  This is what I read (in a book about Edgar Cayce by Mark Thurston):

“”Know, O Israel, (Know, O People) the Lord Thy God is One!”  From this premise we would reason, that:  In the manifestation of all power, force, motion, vibration, that which impels, that which detracts, is in its essence of one force, one source, in its elemental form.  As to what has been done or accomplished by or through the activity of entities that have been delegated powers in activity is another story.”

It was talking about “evil.”  Hmm.  I read on:

“…we first need to recognize the underlying oneness of God (yeah, yeah, yeah, I’ve got that already!).  Then we need to recognize that some choices really are life-promoting and others are not, and that the influence of evil on these choices is a very real thing.  Evil is not separate from God; instead, it’s a negative way of using that one source.”

I stopped.  ““Self will run riot,”” I thought, and then read on:

“With the gift of free will, we could choose to follow God’s plan for our development or rebel against it.”

“Lovely,” I thought, rather sarcastically, “There’s the infamous “God has a plan!” thing again.  But what if God’s plan sucks?”

I reluctantly read on:

“When this first cause (the source) comes into man’s experience in the present realm he becomes confused, in that he appears to have an influence upon this force or power in directing same.  Certainly!  Much, though, in the manner as the reflection of light in a mirror.  For, it is only reflected force that man may have upon those forces that show themselves in the activities, in whatever realm into which man may be delving in the moment-“

Huh?  Thankfully it said it again in different words:

“Despite our delusions, we (human beings) really aren’t the source of the one, creative energy; we are merely able to reflect and direct it.  …think about a mirror, which doesn’t emit its own light but simply reflects light and redirects its path.  Rather than saying, in effect, “I am God,” we need to be saying “I serve the one God who lives in me.”

This stopped me cold.  I’d never read anything like it anywhere before (and it’s quite possible that I’d read something like it before but still missed it, because I do have a tendency to focus on what confirms my own conceptions and leave the rest).  I’m not the source of God’s power, not even in the sense of being a gas tank that needs periodic refilling.  There is no gas tank.  Of and by myself, I have no power.  I’m not a little part of God.  I’m not God at all.

Now, this was a tremendous relief.  “Oh, thank GOD I’m not God!” I actually said out loud, but what was disturbing was the idea that I’m either reflecting God (his light) or I’m reflecting darkness.  No matter what’s going on.  Light or darkness?  Those are the choices.  And being pissed off all the time, about things not going my way, definitely isn’t reflecting light.  It doesn’t bring any power to anything at all.  

I heard Shane, “Jeeesss!  Bring towels!!”

“Whoop, time’s up,” I thought, so I quickly offered up this little prayer before attempting to rescue the bathroom floor, “Dear God.  Since I, thankfully, am not you, and since I have already done everything that I can possibly do for Cale to no avail, I am now powerless to change anything for him.  This means that I am no longer responsible for his well-being.  You are.  And I do sincerely thank you for letting me know that.  You cannot imagine (well, you probably can actually, being God and all) what a relief it is.  Sorry to hand you such a mess, but I know that you’ll do a great job.  And good luck!”

Then I went about serving the one God who lives in me by finding towels.

Later that evening, or maybe it was the next evening, I went about the business of trying to reflect God’s light.  The problem was that I didn’t quite get what that meant.  I mean, it sounds nice.  But how, exactly, does one go about reflecting God?

I met with some friends of mine that evening, and I visited with one friend of mine, in particular, who had just had a brain tumor removed.  He told me all about his recent surgery, and then he asked me how Cale was doing. 

I told him everything – about our medical insurance company refusing to help us, about the wait for a Medicaid waiver, about Cale’s recent injuries and the regression that we’ve seen over this past summer - all of it.  I told him that I keep trying to give it all to God, but that I then seem to take it back again.  Then I give it to God, and then take it back again.  Then I give it to God, and then take it back again, etc.  It’s exhausting.

“I struggle with truly surrendering this,” I said.  “Our plan is to give it a year here in Montana, but if Cale hasn’t been selected for a Medicaid waiver by that point, then we’ll probably have to consider moving back to Arizona (I had already taken it back).  But I really like it here, and it worries me to have to consider moving bac…”

“Don’t do that,” he interrupted.

“Do what?” I asked.

“THAT.  Don’t do THAT,” he answered, “Don’t put any limits on God.  Don’t say, “we’ll wait until blah, blah, blah,” or “we’ll do this IF that.”  (Oh, I was glad that I hadn’t told him about the “if God doesn’t do things my way then he’s not there at all” scenario that I had been wrestling with earlier).  DON’T DO THAT.  Don’t give it any negativity.  Just trust that God is taking care of all of you right now, no matter what.”

He looked at me, just to make sure that I was really listening, and repeated, “NO. MATTER. WHAT.” 

Now, he didn’t actually say, “God has a plan,” but it sounded pretty damn close at first, which kind of made me want to punch him in the face.  I restrained myself, of course, seeing as how he’d just had surgery on his head and all:)  But it sure hasn’t felt like God has been taking care of us.  It’s felt like God has abandoned us.  So I didn’t buy it at first, but when I looked up at my friend’s face, he seemed to be glowing.  I did a double take just to be sure, and yup.  His face, his eyes, his whole body was, in fact, glowing. 

“Reflection of God,” I pondered.

You see, this person has a wife and small children that are dependent on him.  And he had just had a brain tumor removed.  Can you imagine that?  I mean, put yourself into his shoes and truly feel that for a moment.  But, you see, I remember him saying all of this same stuff before he had the surgery, before he knew for sure that he was going to be okay.

He didn’t say that God has a plan.  He never said, “I’ll know that God was taking care of me once I’m healed.”  Nor did he say, “God will heal me.”  Nor did he say, “You’ll know that God was taking care of all of you guys once Cale has gotten help.”  Nor did he say, “Cale will get help.”  What he said was, “No matter what.”

It suddenly became clear to me that while it’s important to reflect God’s light after something has gone our way, it’s maybe most especially important to reflect it before something has gone our way, while things aren’t at all going the way that we want them too, and while things are still at their most difficult.  And my friend had just explained exactly how to do it - “Don’t put any limits on God.  Don’t give anything any negativity.  Just trust that God is taking care of all of you right now, no matter what.”  That’s what he had done.  And, hallucination or not, he was definitely glowing. 

The first thing I did, when I got home that night, was to turn Cale over to God again, and trust that he would be taking care of us - whether Cale gets therapy or not, whether anything ever changes or not, whether I have to give up custody of Cale to the state so that he can go into a group home or not, and whether Cale becomes so detached from me some day that he doesn’t notice when I die or not - no matter what.  I didn’t have to like it.  I only had to do it.  And, ever since then, I’ve focused only on the gorgeous things about my life.

It takes a real act of paying attention to your thinking to do this, I’ve found.  In fact, I don’t think that it can be sustained at all by one simple piece of information.  A piece of information can jump start it again, certainly.  But, for me anyway, better thinking cannot simply come from “getting good and then staying that way.”  It just doesn’t work like that. 

There have been days when it has required concentrated doses of meditation, for however long it takes, to either let go of, or realize that I need to take care of something, that is bothering me, and to turn my thinking in a positive direction again.  But then, simply because of who I am, my thinking still tends to take a turn for the worse again at some point during the day.  But lately, anytime I’ve drifted into negative thinking, I’ve recognized it (tried to imagine a mirror reflecting darkness instead of light), and I’ve tried to re-focus.

Sometimes I have to call somebody (another Autism parent, for example) in order to be able to re-focus.  And it’s so funny how this works, because another Autism parent can often lighten me up about the things that go on with my kids, and I can often lighten them up about the things that go on with theirs. 

The Dali Lama says that when you take on a problem alone, with the mindset of “I, me, or mine,” then even a small problem be very overwhelming.  But when you take on a problem with somebody else, with the mindset of “other” (if you can get yourself to think about somebody else for awhile), then even a very large problem can seem tolerable.  Plus, I just love the little competitions that Autism parents have with each other about whose kid is the weirdest-

“My kid got sent to the principal’s office every day last week.”

“Oh yeah?  Well, my kid got carried out of the classroom by the principal while still in the desk.”

“My kid screamed for two hours yesterday.”

“Mine screamed for five.”

“Mine collects batteries.  I found an entire drawer full of them in his room.  I wondered why all of our batteries kept disappearing.”

“Well, when I looked down at my kid at the doctor’s office, he was repeatedly licking the wall!”

“I apparently took my kid to speech therapy for years and years when he was little, so that he could grow up and tell me to “fuck off!”

“My kid tried to touch my friend inappropriately.”

“Oh hell, my kid tries to molest somebody every day.”

“Oh yeah?  Well, my kid flops down onto the ground starts humping the floor right in front of God and everybody!”

“AAHAAA!  HA!  HA!  HA!!”

Kids with Autism really are kind of entertaining.  I mean, you couldn’t make this stuff up if you tried.

It’s an incredibly useful tool to be able to change my perceptions of the things that go on with my kids, because, when I only compare them to “neuro-typical” children, I get so worried about them.  But when I hear about how other kids with Autism really do grow out of these things, I can lighten up a lot.  Plus it gives me hope that maybe, some day, Cale will be able to tell me to “fuck off.”

I feel like my thinking is being reshaped.  Instead of focusing on Cale’s screaming and hitting and breaking things and flooding the bathroom, I’ve been focusing on how he actually smiles most of the time, on how cute his laugh is when he’s tickled, and on how he sings (you can’t understand the words, but he’s still singing).  And instead of focusing on what it might mean if he never talks, I focus on the positive things about his not talking – he doesn’t harass me for treats or toys at the store like my other two kids do, and he never whines or complains.  Of course, he might start screaming for no reason… whoops!  Positive!  See?  I’m still not very good at it yet, but I’m getting better:)

Instead of wishing that Shane and I could go out on a date, I plan, and rather look forward to, at home dates after bedtime.  And instead of wishing that I could have a career, I write (which is a hell of a lot easier now that school has started again!). 

Any time I find myself thinking about anything negative (which is shockingly often, I’ve found), I try to turn it around into something positive.  I won’t even allow myself the discontent of wishing that my house was blue, and instead sit outside on the front porch and focus on the fact that it’s a rather nice shade of green.  Maybe this all sounds kind of silly, but man does it work well.  I’ve been having an absolutely delightful time.  And it’s slowly been dawning on me that maybe the reason that Cale is in my life is to turn me into a happy person.

Can you imagine me - a naturally pessimistic, cup is definitely half empty, incredibly self-centered and intense woman – being happy?  I’ve always wanted to be one of those light-hearted, happy people.  I’ve even studied happy people and tried to figure out how they do it.  And I used to pray, a lot, for God to turn me into a happy person.  Well, maybe God just finally said, “Okay then, but that’s going to take an awful for you.  Hmm… oh, I’ve got it!  I’ll give you a child who will literally beat the unhappy out of you!”

The funny thing about focusing on what’s good, right here in front of me, at this very moment, is that I feel relatively good most of the time.  And the funny thing about feeling good most of the time is that I no longer care, that much, why I was trying to reflect God’s light in the first place.  This probably has something to do with no longer being attached to the results, and it always seems to be when results actually start coming.

I found a whole bottle of Cale’s old Risperdal (his anti-psychotic) in my cupboard, and we started giving it to Cale again.  I did call the psychiatrist’s office (the one that never returns my phone calls) and let the receptionist know this, and, strangely enough, the psychiatrist called me right back:)  We now have an appointment with the psychiatrist for next week! 

Of course, I’m not sure how we can afford to keep Cale on the Risperdal.  The only profession that I can think of that might supply enough money to cover the cost of it is to go into stripping.  The hours would be good – nights and weekends (when Shane could watch the kids).  But, unfortunately, I’m not twenty and cute anymore, so this would be a reflection a lot of things that nobody should ever have to see, but God’s light definitely wouldn’t be one of them.  Therefore, I’m really not sure how we’ll be paying for the Risperdal, but, since I’m not God, I’m not worried about it.

Since Cale’s been on the Risperdal again, there’s been a huge decrease in his disruptive behaviors.  We’ve seen at least ten times less screaming and aggression than we’ve seen all summer, and I’ve been kind of kicking myself for not putting him back on it sooner.  In fact, just last week, we actually took Cale, along with Alden and Isabel, to a potluck at a friend’s house.  And we hadn’t done anything like this in ages. 

My friend had a large fountain/pond in her back yard, and, shockingly, Cale didn’t take his clothes off and jump into it.  Instead, he grabbed an entire bag of Doritos.  He walked around eating them, getting cheese crud all over his hands, and then wiping his hands, whenever he felt like it, on my friend’s furniture.  My friend told me that she didn’t mind.  And, she genuinely didn’t mind.  I mean, some people say that they don’t mind, but then they really do mind.  But she told me that she has animals, and that her animals get “animal crud” on her furniture.  “So I certainly don’t mind a bit of cheese crud,” she smiled.

Then, when Cale got upset and dumped the entire bag of Doritos onto the floor and started screaming, nobody said, “What’s the matter with you, Cale?”  Instead they said, “Does he need more chips?  We have lots of chips!”

I could’ve kissed everybody there that day.  I mean, there my son was, completely surrounded by people who love him, and he was actually allowing himself to be loved.  I don’t know if it was the medication or just the general energy in the place, but we ate it up like we’d been starving to death all summer (because we kind of had been).  We had such a great time. 

I was on the front porch still thinking about this, and thinking that maybe God’s plan isn’t so bad after all, when Shane came out and told me the news.

The state had called.  They’re going to provide Cale with some “crisis funding,” which I guess they’ve never done for anyone before, which means that Cale will be getting three months worth of some of the therapies that he needs.  And our caseworker informed me that, since he’s been approved for this crisis funding, he’ll also go straight to the top of the waiting list for the next available Medicaid waiver.

“Oh,” I replied, “That’s nice.”  

     

 

Confrontation

When it comes to confrontation, there seem to be two kinds of people in the world.  There are those whose mouths burst wide open at the first opportunity, spitting their feelings and/or opinions onto anyone who happens to be in the same room.  Then there are those who “hold their tongue to the death (to quote a friend of mine).” 

My husband tends to be in the first category.  The sweetest man in the world in most respects, he seems to actually switch personalities when presented with an argument.  And once Mr. Hyde has surfaced, it’s usually no longer about the issue at hand.  It’s about the arguing.

On a debate team for years during high school, Shane can skillfully argue both sides of any issue.  I’ve seen him fill the minds of conservatives with libertarian ideas, and fill the minds of libertarians with conservative ideas.  I’ve also seen him convince meat eaters of the health benefits of a vegetarian diet, and then turn right around and convince vegetarians of the health benefits of eating meat, etc.  It’s kind of fun to watch, actually, until his mother, the only person in the whole wide world who can stop it short, says, “Shane.  Knock it off.”

He has his limits of course, because he does have a conscience.  He used to teach debate to high school students when he was a teacher.  And some of his former debate students showed up to one of the district board meetings that I was at one time (these meetings were being held to determine whether or not the district would close down the alternative high school that I was teaching in at the time).

I recognized these as Shane’s former students immediately, not because I knew what any of them looked like, but because of the way that they argued.  The problem, however, was that they were young and not very skilled yet (or that their then current teacher was letting them present a distasteful argument), so I’m afraid that they came across as little assholes rather than as articulate debate students.

They presented the argument, with intense feigned enthusiasm, that since they were the future taxpayers in our town (the implication being that my students were not), the school district should spend its money on keeping them in football attire and other extra-curricular equipment, rather than spend it on keeping my school, the place where the “drug addicts and future convicts” were being educated, open. 

These students presented this argument right in front of my students, who had felt it important to show up and share their many success stories with the board, to talk about our school’s contributions to these, and to share the fact that our school had, in some cases, actually saved lives.

It was a tacky situation at best.  In fact, the board was so mortified that they had allowed such a coming together to take place at all, that they apologized to everyone in the room afterward.  But it was small comfort by that point. 

We ran into one of these former students of Shane’s at Target a few weeks later, after the district had, indeed, decided to close down my school (It’s a Walgreen's now.  In fact, I just bought stamps there this morning).  This boy actually came up to Shane and bragged, “Mr. Spears!  We went to the district board meeting!  And you should’ve heard our argument!  Blah, blah, blah, blah.”

“Oh NO sweetie, DON’T,” did cross my mind, but I’m afraid that my maternal instinct didn’t spontaneously inflate big enough, for some odd reason, for me to complete a verbal jump in between this boy and my husband.

I don’t remember exactly what this boy said, because I somehow managed to check out mentally for a moment.  I don’t remember exactly how Shane responded either, but I do know that he slipped into that familiar tone of voice.  And I heard the words, “my former students” and “bunch of rich kids who’ve clearly never known any real problems in their entire lives” and “so disappointed” and “I must’ve failed you as your teacher.”

Shane talked to this boy for a long time.  And the boy eventually left us, not only with his tail between his legs, but also with a thorough understanding of his own personal contribution to a possibly very detrimental, community wide mistake.  Ouch.  It did hurt to watch.  But I must confess that I also enjoyed it immensely.

What?  I’m not bitter.  I was moving to Arizona shortly after that.  And, little did I know at the time, I had two Autistic children to look forward to adding to my already high maintenance family, so I wouldn’t have been able to keep teaching anyway.  But I am bitter for my former students.  And I probably always will be. 

“Enjoy your football equipment!” I didn’t call after him.  No, I really didn’t say it.  I had the perfect opportunity and everything.  Yet I held my tongue.  And this brings me to my point.        

While I tend to be in the same category as Shane under most ordinary circumstances, I tend to dip more thoroughly into category number two when it comes to actual confrontation.  I have hundreds of these examples – all of these little moments that I can remember, in which I wish that I had said something that I didn’t say.

Why is this?  Is it that I want people to like what comes out of my mouth more than I want to express my truth?  No, that’s certainly not it.  Is it that I don’t want anyone to dislike what comes out of my mouth?  That’s closer, but not quite it either.  Maybe it has more to do with my truth needing to be very important to me before I’ll take the risk, and that intentionally hurting somebody’s feelings is almost never an important thing for me to try to do.  Yes, that’s probably the closest.

I’ll probably never be the one who’s going to tell you that your toilet paper roll is on the holder backwards, or that the meal that you’ve prepared isn’t absolutely fantastic, or that you look fat in that dress.  If a friend of mine needs an on the spot clothing critic, then I’m the exact wrong person to have around.  If a friend of mine asks me for an honest opinion, however, and is dead serious about it, and gives me a few minutes to think about it (I usually have to switch mental gears big time to get into a critical state of mind about clothing), then I can be honest.  But the God’s honest truth is probably that you look absolutely beautiful to me, no matter how fat you look in that dress.

Now, if you ask me if I think you’ve been a bitch to your husband, or to a friend, or even to the lady behind the counter at the bank, then brace yourself for a real, live, objective opinion.  That’s important stuff.  But also know that I’ll probably never, ever tell you that opinion if you don’t ask me directly for it. 

My tendency is to care more about your feelings than about whether or not you’ve been a bitch, until you ask me directly if you’ve been a bitch.  Then, since I really cannot lie to you and still live with myself, I’m forced to care more about the truth than about your feelings.

This sort of makes sense when it comes to friends, doesn’t it?  But why am I like this with people who clearly aren’t friends?  Why would I care about the feelings of these people at all?

The answer is that I don’t.  I do, however, care about my own feelings.  And I struggle to go to sleep at night if I’ve treated somebody badly that day, no matter what they’ve done to me.  This usually has very little to do to with them, however, and more to do with my own awareness of how mean I can be.  I really like to like who I am when I lay my head on the pillow at night, but I don’t like myself when I’ve been mean to somebody.  

You see, I’m not like my husband, who can use his growing anger to fuel the quality and speed of his own articulation, arguing somebody to death in an appropriate manner.  I’m the exact opposite.  My growing anger eats my rational words (and thoughts) one by one, getting bigger and fatter with each and every bite, until I’m left a speechless idiot who’s literally holding back the beast.  Then you get to win the argument while I focus exclusively on not wrapping my hands around your neck.  And later, I regret not saying the things that I should’ve said (or I regret the inappropriate way in which I said them).

Since having children with Autism who scream like they’re dying and slam their heads into things in public places, I’ve gotten lots and lots of practice with appropriate confrontation in small situations.  I can now look directly into the eyes of the crabby old lady in the waiting room at the doctor’s office, who has no experience with Autism, and no compassion for a mother who’s doing the very best that she can, and who has just told me that I really need to make Cale shut up, and say to her, “Listen honey, I have to listen to it twenty four hours a day, seven days a week.  I think you can survive ten minutes of it.”

When it comes to real confrontation, however, (when someone is genuinely wrong, and has not asked my opinion about it, yet I still have to be the one to point it out to them – an incredibly rare and unusual situation) I still tend to practice avoidance.  

We have to take Cale back to his psychiatrist – the one who prescribed the drugs that put him in the hospital, and then didn’t call, or return our calls, afterward.  I have some compassion for this person regarding the effects of these medications on Cale, as I think that psychiatrists (all doctors actually) are just guessing most of the time about what might help (and/or not actually hurt) people.  And I’m sure that this woman feels just terrible for putting Cale in the hospital (or, at least, I would’ve thought so).  But she didn’t call after he got home from the hospital to see if he was okay (even though the hospital doctors let her know what had happened).  And she hasn’t returned any of our calls (we left messages for the next three days in a row) either. 

Are we considering a lawsuit?  No.  Unfortunately, there have only been two people (that we could find anyway) who have won lawsuits regarding Serotonin Syndrome.  One of them actually died from it, and the other was able to prove that the psychiatrist had been negligent.  When it comes to psychiatric medications, I’m afraid that they get you to agree to a certain amount of risk before they’ll treat your child.

We do plan on confronting her though, because this is one of those times in which, even I have to admit, to not say something would leave me awake at night more than saying something (even inappropriately) would.  I’ve tried and tried to find a way to produce some compassion for the psychiatrist for not calling.  But there’s just no way around it (that I’ve found anyway), because it’s just plain fucked up is what it is.  Not only that, but it also seems like Cale’s world (and sometimes Isabel’s too) is filled to the brim with people who want us (and sometimes them too) to just go away (the insurance company, the state DDD and Medicaid people, the schools).  Therefore, we never just go away.

Shane finally got a hold of somebody in the psychiatrist's office, on the fourth day in a row of trying, who told him that we should just bring Cale to his next scheduled appointment.  So I figured that Shane and I would go to the appointment together, that Shane would appropriately and politely paint the psychiatrist a detailed portrait of her own inadequacy as human being, and that we would leave and never go back. 

Unfortunately, our next scheduled appointment was this week, during which my primary verbal weapon, Shane, was in Phoenix for work.  Therefore, I had to face the idea of going to the appointment and confronting the psychiatrist alone.

I spoke with my spiritual adviser of sorts about it.  And I told her that there was really no need for me to go, because it’s not like we’re going to continue taking Cale to this psychiatrist anyway.  “The appointment,” I told her, “is really just about confronting her on her apathy, that’s all.  And I won’t be able to be polite about this the way that Shane would be able to.”

Do you know how you can generally tell when somebody probably shouldn’t do something?  It’s when they want to do it just a little too badly.  And do you know how you can tell when somebody probably really should do something?  They don’t want to.  It’s uncanny how often this little rule of thumb turns out to be the actual case.

I don’t believe that there’s any right or wrong answer about these things.  Instead I think it has more to do with motives.  What is it that is motivating me to say something or not?  Saying something simply because it feeds my ego (to make me “right” and make you “wrong”) is the wrong motive for me to say something.  But if I don’t say something only because it protects me from what might happen if I do, then that’s just the flip side of the same coin.  It’s still about protecting ego. 

A good rule of thumb, I’ve found, when trying to make a decision like this, is to ask the question, “If I was to look back on this situation from my death bed, would I wish that I had said it?”  The cool thing about asking myself this question on a regular basis is that I find that I tell people that I love them a lot more often than I ordinarily would’ve too.

“I think you should go,” my spiritual adviser of sorts said to me, “I think you need the closure.”

“But I won’t be able to be appropriate about it,” I said.

“Just pray before you go.  You can be honest with her without being mean,” she replied, “Just say that you’re very concerned about what happened, and that you’re disappointed that she didn’t call afterward or return your calls all week.  Then tell her that you’re in a lot of fear now, because not only is it going to take you three months to get into a new psychiatrist, but that you feel all alone in trying to figure out what to do for Cale right now.”

“But I won’t be able to be appropriate about it,” I repeated.

“Yes, you will,” she replied.

By the day before the appointment, I bet I had played out fifteen different scenarios in my mind, each using some variation of what my spiritual adviser of sorts had suggested to say, and each still ending with my hands around the psychiatrist’s neck.  I really didn’t want to go.  But I had known for a few days that I needed to be willing to go.  I just knew that this was a test.  And I knew that if I failed it, I’d somehow find myself taking it again.  So I had prayed a lot.  And I had become willing to go.

It seems that the moment that I actually became willing to go, every roadblock that could’ve possibly popped up to keep me from going to this appointment, started popping up.  Shane, like I said, was out of town for work.  And my mother-in-law’s sister-in-law passed away, so my-mother-in law (my primary source of help with the kids) was out of town.  And my cell phone had died.  And I mean dead.  It was a touch screen, and it had stopped responding to touch of any kind (believe me I tried them all).  And I don’t have a land line, so I had no way to call anyone, receive calls, check my messages, or text.

Yeah, yeah, I know.  But I ask you this – have you ever actually seen a child with recognizable Autism in a Verizon Wireless store with one lone adult?  No you have not.  And there’s a reason for this.  You’d have to pay me $100,000 to take Cale into a Verizon Wireless store, because after he got done destroying everything, that’s probably about what our tab would be.  It’s kind of amazing how restricted Autism parents can be.  Something like a dead cell phone can takes weeks to deal with.  And regular people take for granted, I think, ordinary things like being able to run errands.

I had asked some friends of mine for babysitting help that week so that I could go and get a new phone, but most of my friends work during the day, and my spiritual adviser of sorts had gone out of town, so I hadn’t found anyone who could help me.

“Oh well,” I figured the night before the appointment, “I don’t need to call the psychiatrist.  I just need to show up at the damned appointment.”

My plan was to drop Alden and Isabel off at bible school that morning at 9am, and have my grandma pick them up when it was over with at noon and take them to her house until after the psych. appointment (my grandma is 82 years old and can handle Alden and Isabel, but not Cale).  After I dropped Alden and Isabel off at bible school at 9am, then I’d go and buy a new phone, get Cale off the school bus at 11:15am (it was his last day of summer school, now I’ll have him home twenty four seven until September or whenever the hell school starts up again), and get him to the appointment by 11:40am.  Then I’d pick Alden and Isabel up from my grandma’s after the appointment, and the whole damn thing would be over with.  Then it would be ice cream from the Dairy Queen drive through to celebrate a job well done.

It was a good plan.  In fact, I had laid my head on the pillow that night rather proud of myself for having gotten it together, because it had taken some real finagling to put it together without a phone.  So I knew that I must be willing.  I was going to be confronting this psychiatrist alone come hell or high water.

“Mom,” Alden woke me up, “I don’t feel very good.”

“You have got to be kidding me,” no I didn’t actually say that to him.

He threw up all night long.  And, by the next morning, he was having diarrhea every few minutes.

I already knew that nobody could babysit, not that I had any way to call anyone and double check, and not that anyone should babysit a puking child anyway.  I also had no way to call my grandma to ask if she could come and watch Alden and Isabel so that I could still take Cale to the appointment.  And I had no way of leaving the house (to go to my grandmother’s house and ask her if she could watch Alden and Isabel, or even let her know not to pick them up from bible school at noon) because Alden couldn’t be away from a toilet for more than a few minutes at a time.

I thought, for a moment, about taking all three of my kids to the appointment.  “Sorry,” I would say, “but I literally have no help today.  And, since our lives really are this damned complicated, I would greatly appreciate you not putting Cale into the hospital with your drugs anymore.  And if you could at least pretend, just a little tiny bit, to give a shit about Cale, I would greatly appreciate that as well (oh, maybe I really wasn’t ready).”

It would’ve been fun.  But, again, Alden couldn’t be away from a toilet for more than a few minutes at time.  I didn’t even have a way to call the psychiatrist to let her know that we weren’t coming.  All I could do was email Shane and ask him to call and reschedule the appointment, and ask him to call my grandma and let her know not to pick up the kids at noon, and hope like hell that he got the message before the appointment and before noon.  It was absolutely ridiculous.  He did get the message in time, by the way. 

I guess that it just wasn’t meant to be this week, but I do fully intend to keep my “big girl panties” securely fastened for our next scheduled appointment.  And I think that I’ll even have a little talk with Shane and let him know what I’ve been through with all of this.  That way I can say to him, “Let me do the talking, will you?”  But, to be perfectly honest with you, it will probably still all end with me leaning back in my chair and saying, “Oh, just sick her sweetie.”